Dimensions of Long-Term Care Management: An Introduction, Third Edition [3 ed.] 1640553673, 9781640553675

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T HIRD EDI T ION

DIMENSIONS OF

Long-Term Care Management An Introduction

MARY HELEN McSWEENEY-FELD CAROL MOLINARI, EDITORS

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HAP/AUPHA Editorial Board for Undergraduate Studies Tina DiFranco, Chair University of Baltimore Bryan K. Breland, DrPH, JD University of Alabama at Birmingham Stephen Brown George Mason University Jennifer Bushelle-Edghill, PhD Fayetteville State University Holly Hampe, DSc Robert Morris University Lori Peterson, PhD Northeastern State University Kolby T. Redd, PhD Anderson University/University of South Carolina Liliya Roberts University of Maryland Global Campus Dale L. Sanders, DO, DHA Alma College Geoffrey Silvera University of Alabama at Birmingham Karen Valaitis University of West Florida

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Health Administration Press, Chicago, Illinois Association of University Programs in Health Administration, Washington, DC Copying and distribution of this PDF is prohibited without written permission. For permission, please contact Copyright Clearance Center at www.copyright.com.

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Your board, staff, or clients may also benefit from this book’s insight. For information on quantity discounts, contact the Health Administration Press Marketing Manager at (312) 424-9450. This publication is intended to provide accurate and authoritative information in regard to the subject matter covered. It is sold, or otherwise provided, with the understanding that the publisher is not engaged in rendering professional services. If professional advice or other expert assistance is required, the services of a competent professional should be sought. The statements and opinions contained in this book are strictly those of the authors and do not represent the official positions of the American College of Healthcare Executives or the Foundation of the American College of Healthcare Executives. Copyright © 2023 by the Foundation of the American College of Healthcare Executives. Printed in the United States of America. All rights reserved. This book or parts thereof may not be reproduced in any form without written permission of the publisher. 27   26   25   24   23

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Library of Congress Cataloging-in-Publication Data is on file at the Library of Congress, Washington, DC. ISBN: 978-1-64055-367-5 The paper used in this publication meets the minimum requirements of American National Standard for Information Sciences—Permanence of Paper for Printed Library Materials, ANSI Z39.48-1984. ∞ ™ Manuscript editor: Lori Meek Schuldt; Cover designer: James Slate; Layout: Integra Found an error or a typo? We want to know! Please e-mail it to [email protected], mentioning the book’s title and putting “Book Error” in the subject line. For photocopying and copyright information, please contact Copyright Clearance Center at www.copyright.com or at (978) 750-8400. Health Administration Press A division of the Foundation of the American College of Healthcare Executives 300 S. Riverside Plaza, Suite 1900 Chicago, IL 60606-6698 (312) 424-2800

Association of University Programs in Health Administration 1730 Rhode Island Ave NW Suite 810 Washington, DC 20036 (202) 763-7283

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For our mothers, Dorothy and Esther, and their lives well lived For our spouses, Ira and Brian, and their support that made the third edition of this book possible

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BRIEF CONTENTS

Preface to the Third Edition................................................................................xix Acknowledgments...............................................................................................xxiii

PART I: Overview of Long-Term Care Chapter 1 Dimensions of Long-Term Care........................................................... 3 Mary Helen McSweeney-Feld, PhD, Jenny Inker, PhD, LALFA, and Jennifer Pryor, MS, LALFA Chapter 2 Long-Term Care After the Affordable Care Act.................................. 30 Mary W. Carter, PhD, Patricia M. Alt, PhD, and Mary Helen McSweeney-Feld, PhD PART II: Care Settings for Long-Term Care Services Chapter 3 Transitions of Care............................................................................. 69 Robert R. Kulesher, PhD, FACHE, and Mary Helen McSweeney-Feld, PhD

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Brief Contents

Chapter 4 Residential Settings for Long-Term Care Services............................. 102 Jenny Inker, PhD, LALFA, Jennifer Pryor, MS, LALFA, and Mary Helen McSweeney-Feld, PhD Chapter 5 Home, Community-Based, and Technology Services in Long-Term Care.............................................................. 127 Mary Helen McSweeney-Feld, PhD Chapter 6 Hospice, Palliative Care, and End-of-Life Care Services.................... 160 Christina M. Daley, PhD, and Brian Feld, MSW Chapter 7 Population Health, Wellness, and Chronic Health Conditions......... 188 Mary Helen McSweeney-Feld, PhD, and Laurencia Hutton-Rogers, DrPH Chapter 8 Diversity and the Delivery of Long-Term Care Services.................... 218 Carol Molinari, PhD, and Emiko Takagi, PhD Chapter 9 International Long-Term Care.......................................................... 244 Emiko Takagi, PhD, and Carol Molinari, PhD PART III: Management Issues Chapter 10 Leadership and Management in Long-Term Care............................. 269 Sandi Lane, PhD, LNHA, FACHE, and Jennifer Johs-Artisensi, PhD Chapter 11 Long-Term Care Operations............................................................. 291 Patrick Nicovich, MPA, LNHA, Christopher Johnson, PhD, and Mary Helen McSweeney-Feld, PhD Chapter 12 The Long-Term Care Workforce....................................................... 332 Carol Molinari, PhD, Teta Barry, PhD, Mary Helen McSweeney-Feld, PhD Chapter 13 Legal and Ethical Issues in Long-Term Care..................................... 366 Mary Helen McSweeney-Feld, PhD, and Philip C. DuBois, MS, LNHA, FACHCA

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Brief Contents

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Chapter 14 Regulation of Long-Term Care......................................................... 386 Sharon Eyster, MS, LBSW, CNHA, and Mary Helen McSweeney-Feld, PhD Chapter 15 Financing Long Term Care Services.................................................. 406 Patrick E. Nicovich, MPA, LNHA, and Mary Helen McSweeney-Feld, PhD Chapter 16 Risk Management, Quality, and Safety in Long-Term Care.............. 437 Cyrus Y. Engineer, DrPH, and Mary Helen McSweeney-Feld, PhD Glossary.................................................................................................................. 473 Index........................................................................................................................ 497 About the Editors................................................................................................ 523 About the Contributors...................................................................................... 525

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DETAILED CONTENTS

Preface to the Third Edition................................................................................xix Acknowledgments...............................................................................................xxiii

PART I: Overview of Long-Term Care Chapter 1 Dimensions of Long-Term Care........................................................... 3 Mary Helen McSweeney-Feld, PhD, Jenny Inker, PhD, LALFA, and Jennifer Pryor, MS, LALFA Learning Objectives............................................................................................ 3 What is Long-Term Care?................................................................................... 4 Consumers of Long-Term Services and Supports in the United States................. 4 History of Long-Term Care Service Delivery...................................................... 9 Aging, Disability, and Chronic Health Conditions........................................... 13 Models of Long-Term Care Delivery................................................................. 15 Key Aspects of Long-Term Care........................................................................ 17 A Look Ahead................................................................................................... 20 For Discussion.................................................................................................. 20 Case Study: Community Asset Mapping........................................................... 21 Case Study Questions....................................................................................... 25 References......................................................................................................... 26 xi Copying and distribution of this PDF is prohibited without written permission. For permission, please contact Copyright Clearance Center at www.copyright.com.

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Chapter 2 Long-Term Care After the Affordable Care Act.................................. 30 Mary W. Carter, PhD, Patricia M. Alt, PhD, and Mary Helen McSweeney-Feld, PhD Learning Objectives.......................................................................................... 30 Overview of Long-Term Services and Supports in the United States................. 32 Overview of the Affordable Care Act................................................................ 32 History of Long-Term Services and Supports.................................................... 33 Obstacles to Ltss Access.................................................................................... 37 Defining High-Performance Delivery of Ltss.................................................... 38 The Effect of the Aca on the Delivery of Ltss.................................................... 38 Opportunities and Challenges in The 2020s..................................................... 52 A Look Ahead................................................................................................... 54 For Discussion.................................................................................................. 54 Case Study: Acos and Nursing Home Services—The New Frontier................... 55 Case Study Questions....................................................................................... 56 References......................................................................................................... 56 PART II: Care Settings for Long-Term Care Services Chapter 3 Transitions of Care............................................................................. 69 Robert R. Kulesher, PhD, FACHE, and Mary Helen McSweeney-Feld, PhD Learning Objectives.......................................................................................... 69 Transitions of Care and Care Coordination....................................................... 70 Healthcare Providers and Transitions of Care.................................................... 71 Historical Perspectives on Care Transitions....................................................... 75 Research on Care Transitions............................................................................ 77 Hospital–Skilled Nursing Facility Partnership................................................... 78 Guidelines to Address Problems in Care Transitions.......................................... 79 Laws and Regulations Affecting Care Transitions.............................................. 79 The Future of Care Transitions and Post-Acute Care Services............................ 84 A Look Ahead................................................................................................... 87 For Discussion.................................................................................................. 87 Case Study: Coordinating Care for Special Populations.................................... 88 Case Study Questions....................................................................................... 91 References......................................................................................................... 91

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Detailed Contents

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Chapter 4 Residential Settings for Long-Term Care Services............................. 102 Jenny Inker, PhD, LALFA, Jennifer Pryor, MS, LALFA, and Mary Helen McSweeney-Feld, PhD Learning Objectives........................................................................................ 102 Independent Living........................................................................................ 103 Assisted Living Facilities.................................................................................. 109 Skilled Nursing Facilities................................................................................. 113 Life Plan Communities................................................................................... 119 International Perspectives on Residential Long-Term Care.............................. 120 A Look Ahead................................................................................................. 121 For Discussion................................................................................................ 121 Case Study: Prospects for St. Peter’s Nursing and Rehabilitation Center.......... 122 Case Study Questions..................................................................................... 123 References....................................................................................................... 123 Chapter 5 Home, Community-Based, and Technology Services in Long-Term Care.............................................................. 127 Mary Helen McSweeney-Feld, PhD Learning Objectives........................................................................................ 127 Social Policy and The Development of Community-Based Care Services........ 128 Types of Community-Based Services............................................................... 136 Innovations in HCBS: Consumer-Directed Programs..................................... 144 International Perspectives on HCBS............................................................... 146 A Look Ahead................................................................................................. 146 For Discussion................................................................................................ 147 Case Study: Serving Senior Veterans............................................................... 148 Case Study Questions..................................................................................... 152 References....................................................................................................... 152 Chapter 6 Hospice, Palliative Care, and End-of-Life Care Services.................... 160 Christina M. Daley, PhD, and Brian Feld, MSW Learning Objectives........................................................................................ 160 Theoretical and Conceptual Foundations........................................................ 161 Core Issues in Hospice and Palliative Care...................................................... 163 A Look Ahead................................................................................................. 178 For Discussion................................................................................................ 179 Case Study: Palliative Care Choices................................................................ 180

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Case Study Questions..................................................................................... 181 References....................................................................................................... 181 Chapter 7 Population Health, Wellness, and Chronic Health Conditions......... 188 Mary Helen McSweeney-Feld, PhD, and Laurencia Hutton-Rogers, DrPH Learning Objectives........................................................................................ 188 Population Health........................................................................................... 189 Wellness and Long-Term Care Communities.................................................. 196 Chronic Health Conditions and Management................................................ 199 A Look Ahead................................................................................................. 205 For Discussion................................................................................................ 206 Case Study: Structure and Governance for Sustainability................................ 207 Case Study Questions..................................................................................... 212 References....................................................................................................... 212 Chapter 8 Diversity and the Delivery of Long-Term Care Services.................... 218 Carol Molinari, PhD, and Emiko Takagi, PhD Learning Objectives........................................................................................ 218 What is Diversity?........................................................................................... 220 History of Research on Diverse Elders............................................................ 221 Selected Demographics of Older Adults.......................................................... 222 Health Disparities Among Selected Older Adults by Ethnicity and LGBTQ Identity.................................................................................... 226 Disparities in Long-Term Care Among Older Racially and Ethnically Diverse Adults........................................................................................ 230 Delivering Culturally Competent Long-Term Care......................................... 231 A Look Ahead................................................................................................. 233 For Discussion................................................................................................ 233 Case Study: Culturally Sensitive Palliative Care............................................... 234 Case Study Questions..................................................................................... 235 References....................................................................................................... 235 Chapter 9 International Long-Term Care.......................................................... 244 Emiko Takagi, PhD, and Carol Molinari, PhD Learning Objectives........................................................................................ 244 Global Trends in Population Aging................................................................. 245 Public Long-Term Care Policies Around the World........................................ 248 A Global Epidemic of Dementia..................................................................... 256

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A Look Ahead................................................................................................. 258 For Discussion................................................................................................ 259 Case Study: Shortage of Long-Term Care Workers.......................................... 260 Case Study Questions..................................................................................... 260 References....................................................................................................... 261 PART III: Management Issues Chapter 10 Leadership and Management in Long-Term Care............................. 269 Sandi Lane, PhD, LNHA, FACHE, and Jennifer Johs-Artisensi, PhD Learning Objectives........................................................................................ 269 Leadership Versus Management...................................................................... 270 Leadership Roles............................................................................................. 272 Strategic Planning........................................................................................... 274 Organizational Culture and Culture Change................................................... 275 Managing Internal Workforces........................................................................ 276 Leadership Team............................................................................................. 278 Communication............................................................................................. 281 A Look Ahead................................................................................................. 284 For Discussion................................................................................................ 284 Case Study: Leadership and Person-Centered Care......................................... 285 Case Study Questions..................................................................................... 287 References....................................................................................................... 287 Chapter 11 Long-Term Care Operations............................................................. 291 Patrick Nicovich, MPA, LNHA, Christopher Johnson, PhD, and Mary Helen McSweeney-Feld, PhD Learning Objectives........................................................................................ 291 Types of Long-Term Care Communities......................................................... 292 Delivery Models for Long-Term Care Services................................................ 294 Business Operations in Long-Term Care Communities.................................. 295 Administrator Role and Functions.................................................................. 314 A Look Ahead................................................................................................. 321 For Discussion................................................................................................ 322 Case Study: How Management Style Affects Operations................................. 323 Case Study Questions..................................................................................... 326 References....................................................................................................... 326

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Chapter 12 The Long-Term Care Workforce....................................................... 332 Carol Molinari, PhD, Teta Barry, PhD, Mary Helen McSweeney-Feld, PhD Learning Objectives........................................................................................ 332 Composition of the Long-Term Care Workforce............................................. 333 Overview of Human Resources in Long-Term Care........................................ 344 Goals and Functions....................................................................................... 344 The Strategic Role of Human Resources.......................................................... 348 Staffing........................................................................................................... 348 Training and Development............................................................................. 352 Performance Appraisal.................................................................................... 352 A Look Ahead................................................................................................. 356 For Discussion................................................................................................ 357 Case Study: Retaining Certified Nursing Assistants......................................... 357 Case Study Questions..................................................................................... 358 References....................................................................................................... 358 Chapter 13 Legal and Ethical Issues in Long-Term Care..................................... 366 Mary Helen McSweeney-Feld, PhD, and Philip C. DuBois, MS, LNHA, FACHCA Learning Objectives........................................................................................ 366 Overview of Legal Issues................................................................................. 367 End-of-Life Issues........................................................................................... 369 Ethical Decision Making in Long-Term Care.................................................. 372 A Look Ahead................................................................................................. 380 For Discussion................................................................................................ 380 Case Study: Ethical Decision Making at the End of Life................................. 381 Case Study Questions..................................................................................... 382 References....................................................................................................... 382 Chapter 14 Regulation of Long-Term Care......................................................... 386 Sharon Eyster, MS, LBSW, CNHA, and Mary Helen McSweeney-Feld, PhD Learning Objectives........................................................................................ 386 Origins of Long-Term Care Regulation........................................................... 387 Licensure, Certification, and Accreditation for Long-Term Care Services........ 389 A Look Ahead................................................................................................. 399 For Discussion................................................................................................ 400 Case Study: The Joint Commission and Accreditation.................................... 401

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Case Study Questions..................................................................................... 401 References....................................................................................................... 402 Chapter 15 Financing Long Term Care Services.................................................. 406 Patrick E. Nicovich, MPA, LNHA, and Mary Helen McSweeney-Feld, PhD Learning Objectives........................................................................................ 406 Long-Term Care Service Reimbursement in the United States........................ 407 Financial Management Tools for Long-Term Care Administrators.................. 414 Policy Issues: How to Pay for Long-Term Care in The Future......................... 426 A Look Ahead................................................................................................. 429 For Discussion................................................................................................ 429 Case Study: Managing A Budget During Tight Fiscal Times........................... 430 Case Study Questions..................................................................................... 431 References....................................................................................................... 432 Chapter 16 Risk Management, Quality, and Safety in Long-Term Care.............. 437 Cyrus Y. Engineer, DrPH, and Mary Helen McSweeney-Feld, PhD Learning Objectives........................................................................................ 437 Risk Management Principles........................................................................... 439 History of Quality Improvement.................................................................... 439 Quality in Healthcare..................................................................................... 441 Safety in Long-Term Care............................................................................... 453 A Look Ahead................................................................................................. 456 For Discussion................................................................................................ 457 Case Study: Coumadin Controversy............................................................... 458 Case Study Questions..................................................................................... 458 Appendix: Seven Basic Quality Tools.............................................................. 459 References....................................................................................................... 465 Glossary.................................................................................................................. 473 Index........................................................................................................................ 497 About the Editors................................................................................................ 523 About the Contributors...................................................................................... 525

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PREFACE

T

he delivery system for long-term services and supports (LTSS) in the United States, as well as the variety of these services, has grown considerably since 2010. External forces such as implementation of the Affordable Care Act, the growing importance of population health management, increased demographic diversity, new laws and regulations, and the impact of the COVID-19 pandemic on healthcare services have ushered in new priorities and opportunities for individuals interested in caring for people with chronic illness and long-term care needs. At the same time, the population of older people and people living with disabilities has increased and is expected to continue to grow through 2050 and beyond. These forces are not unique to the United States—they have become global trends that affect the healthcare and economic systems of many countries. As such, these forces require instructors to take a new look at long-term care services to ensure that students understand this dynamic, rapidly growing sector along with emerging new career paths. The third edition of Dimensions of Long-Term Care Management was written at an introductory level so that it may be used by undergraduates and other students new to the field of healthcare management. Readers will gain a broad overview of the market for long-term services and supports as well as the needs of older adults and people living with disabilities. It also covers important management issues in the delivery of long-term care services and supports, such as leadership, management, and operations of long-term care communities; strategies for managing the long-term care workforce; and external factors such as the legal and ethical framework for LTSS as well as risk management, quality, and safety principles in long-term care settings. This edition includes content responsive to the 2022 National Association of Long-Term Care Administrator Boards (NAB) domains of xix Copying and distribution of this PDF is prohibited without written permission. For permission, please contact Copyright Clearance Center at www.copyright.com.

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practice for long-term care administrators, specifically the Health Services Executive (HSE) licensure path, through the addition and reorganization of chapter content. The impact of the COVID-19 pandemic on the delivery of long-term services and supports, as well as health equity and population health initiatives to address these issues, are examined in a revised chapter on population health and chronic health conditions in this edition. An overview of long-term care operations, one that emphasizes the day-to-day operations of long-term care communities, is provided in a new management chapter. This edition has expanded coverage as well as updated regulatory content for services that meet the Medicare Conditions of Participation, such as skilled nursing facilities, home health care, and hospice. The chapter on the long-term care workforce features a renewed focus on the staffing shortages and challenges faced by long-term care service providers, which were exacerbated in the wake of the COVID-19 pandemic and the “great resignation.” To support the focus on population health and addressing health disparities and health equity issues affecting long-term services and supports, case studies focused on population health have been integrated into some chapters, with recommendations for use, from Connie Evashwick and Jason Turner’s Cases in Population Health and Community Health casebook, published by Health Administration Press. The third edition of Dimensions of Long-Term Care Management is organized in three parts as follows: ◆◆ Part I provides an overview of long-term services and supports, including definitions of long-term care and long-term care services, descriptions of delivery systems for these services, and policy implications for services and supports after the passage and implementation of the Affordable Care Act, as well as the impact of the COVID-19 pandemic. ◆◆ Part II offers perspectives on who provides these services and who uses them, along with a discussion of systems for reimbursement. It examines the spectrum of long-term services and supports, including care transitions and post-acute care; residential care; home and community-based care and technology services; hospice, palliative care, and end-of-life care; population health management and care for individuals with chronic health conditions; and the impact that growing cultural diversity is having on long-term care service delivery. Global perspectives related to long-term care perspectives are also provided in this edition. ◆◆ Part III is an overview of the management issues affecting long-term care service delivery. The chapters in this part consider management issues unique to the long-term care field, such as leadership and management of long-term care services, operations of long-term care communities, the long-term care workforce, legal and ethical issues, regulation of long-term care, financing long-term care services, and risk management, quality, and safety in long-term care. Copying and distribution of this PDF is prohibited without written permission. For permission, please contact Copyright Clearance Center at www.copyright.com.

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This book is accompanied by an instructor resources component that includes the answers to end-of-chapter questions, the answers to the study questions, a test bank of examination questions, sample course syllabi, and instructional PowerPoint slides. The instructor resources take into account instructors’ need for flexible coverage of the topic; the growing use of interactive technology for delivery of online and hybrid course delivery systems; in-person instruction; and varying course length, from five-week intensives to traditional 14-week, semester-based classes. We hope that the third edition of this book continues to inspire individuals to enter the long-term care field and consider the diversity of career paths in this dynamic and evolving global market. We also hope that readers develop the same enthusiasm and passion for long-term care services that we have. We look forward to your feedback on this third edition. Mary Helen McSweeney-Feld, PhD, LNHA, FACHCA Associate Professor and Program Director, Health Care Management Program Department of Health Sciences, College of Health Professions Towson University Towson, Maryland [email protected]

Carol Molinari, PhD Professor School of Health and Human Services University of Baltimore Baltimore, Maryland [email protected]

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I nstructor R esourc es This book’s Instructor Resources include a test bank, PowerPoint slides for each chapter, answers to the study questions, guides to the case studies, and a transition guide to the new edition. For the most up-to-date information about this book and its Instructor Resources, visit ache.org/HAP/. This book’s Instructor Resources are available to instructors who adopt this book for use in their course. For access information, please email [email protected].

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ACKNOWLEDGMENTS

T

his book could not have been written without the unique contributions of a number of scholars and practitioners in the field who graciously agreed to share, in their respective chapters, their knowledge and expertise. We gratefully acknowledge the support of Connie Evashwick and Jason Turner for their approval of our use of selected cases from their Cases in Community Health and Population Health casebook to reinforce the population health focus of this new edition. We would like to express our gratitude for the contribution of Patrick Nicovich, MS, LNHA, at the University of Alabama–Birmingham in creating a new Long-Term Care Operations chapter, as well as his input and suggestions for improvements in the healthcare financial management chapter and other book content. We are deeply indebted to all authors and are grateful for their patience and willingness to work with us to make this project a success. Our colleagues at Health Administration Press, especially Kevin McLenithan and Jennette McClain, and the editorial expertise of Lori Meek Schuldt, were invaluable in completion of this third edition. We would also like to thank Rebecka Livingstone for her timely assistance with updates to the PowerPoint slides for the third edition of the textbook as well as the Instructor’s Manual. Lastly, the love, support, and understanding of our family members continued throughout the completion of this third edition and allowed us to create a book that addresses the complex issues of long-term care service delivery in a post–COVID-19 pandemic world.

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PA R T I

OVERVIEW OF LONG-TERM CARE

O

ur definition of long-term care has changed considerably throughout the twenty-first ­century. The changes have been prompted by major shifts in society: the aging of the baby boomers, growing numbers of individuals with disabilities living in communities, increased diversity in the population, changes in reimbursement for healthcare services, use of new technologies, and an evolution in healthcare policy supportive of older adults and people living with disabilities. With an increased emphasis on the environments in which individuals live, as well as on home and community-based services, discussion of long-term care has evolved to focus on long-term services and supports, highlighting the social services and caregiving components of service delivery. The passage of the Affordable Care Act in 2010 brought new requirements and new opportunities for the provision of long-term services and supports for individuals transitioning from acute care to their homes or rehabilitation settings. Greater coordination of care between acute and longterm care services for Medicare-eligible individuals has become a reality, with stronger emphasis on reduction of 30-day readmission rates to hospitals. Individuals returning to their communities may be supported by accountable care organizations that ensure continuous monitoring of health conditions and expedited access to services, if needed, or other home health or nonmedical home care services. The impact of the COVID-19 pandemic on long-term services and supports is evolving and is just starting to be understood. Economic, social, and racial disparities emerged during the pandemic, and the Centers for Medicare & Medicaid Services (CMS 2022) released its Framework for Health Equity 2022–2023 to respond to these developments. Emergency measures affecting infection control and personal protective equipment for healthcare professionals, enhanced reimbursement for long-term care services, support for telehealth services, and new structures to facilitate innovative approaches to long-term care service delivery have emerged. The Blueprint for a Better Aging Infrastructure released by LeadingAge (2022) was designed to address the physical and technological problems faced by people needing long-term services and supports and to support and increase the long-term care services workforce. Recommendations from the Blueprint for a Better Aging Infrastructure argue that those providing long-term services and supports compose an essential component of American infrastructure that needs attention and resources to address growing demand (LeadingAge 2022). Copying and distribution of this PDF is prohibited without written permission. For permission, please contact Copyright Clearance Center at www.copyright.com.

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D i m e n s i o n s o f L o n g - Te r m C a r e M a n a g e m e n t

Part I of this book explores basic definitions, statistics, and trends in long-term services and supports that provide policy and context for discussions about the demand and consumption of these services. It examines models of long-term care service delivery, including a more fluid model in which the key dimensions of residential services, home and community-based care, and technology and supportive services are accessed through a variety of entry points with the help of a care navigator. The authors encourage readers to use this introduction to apply information on health disparities and culture to long-term services and supports and to use it to inform their career choices, workplaces, and personal interactions with others.

References Centers for Medicare & Medicaid Services (CMS). 2022. CMS Framework for Health Equity 2022–2023. Office of Minority Health. Published April. www.cms.gov/files/document/ cms-framework-health-equity.pdf. LeadingAge. 2022. Blueprint for a Better Aging Infrastructure. Accessed July 18. https://leadingage.org/sites/default/files/LeadingAge_Blueprint%20Aging%20 Infrastructure.pdf.

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CHAPTER 1

DIMENSIONS OF LONG-TERM CARE Mary Helen McSweeney-Feld, PhD, Jenny Inker, PhD, LALFA, and Jennifer Pryor, MS, LALFA

Learning Objectives After completing this chapter, you should be able to ➤➤ define long-term care and long-term services and supports; ➤➤ explain changing patterns of demographics in the United States in terms of growing demand for long-term care services and supports; ➤➤ understand the history of long-term care service delivery; ➤➤ describe models for long-term care service delivery; ➤➤ discuss the providers and payers of long-term services and supports, including informal sources of support such as family caregivers; ➤➤ apply the theoretical foundations of long-term care service delivery to assess their impact on healthcare policy; and ➤➤ understand the impact of COVID-19 on health disparities in long-term care service delivery and new directions for long-term services and supports.

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long-term care (LTC) A wide range of health services, support services, and other assistance provided informally or formally to individuals who are living with chronic illnesses or disabilities and unable to function independently on a daily basis. long-term services and supports (LTSS) Services and supports provided to individuals at any age and in a wide range of settings

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is

L o n g -T e rm C a re ?

Long-term care (LTC) consists of a variety of health services, support services, and other assistance provided informally or formally to individuals who are living with a chronic illness or disability and are unable to function independently. Long-term services and supports (LTSS) may be offered in various settings to people at any age who need help performing activities of daily living (ADLs) or instrumental activities of daily living (IADLs). Examples of ADLs include bathing, dressing, eating, toileting, and transferring (e.g., ­walking). Examples of IADLs include cooking, cleaning, buying groceries and other essentials, administering medication, handling money or finances, and using the telephone. Individuals living with Alzheimer’s disease and other dementias, as well as those living with intellectual or developmental disabilities, may have additional, specialized needs. Long-term care services can be tailored to clients’ physical, mental, emotional, social, spiritual, and financial needs and capacities. Additionally, long-term care services may evolve over time in response to changes in clients’ needs and resources. Long-term care is oriented toward living with and managing chronic illnesses or disabilities, not curing them. As such, it aims to ensure continuity of care rather than deliver episodic interventions (Hooyman and Kiyak 2011).

that correspond to problems in performing activities of daily living and instrumental activities of daily living. activities of daily living (ADLs) Basic and routine daily activities such as eating, bathing,

C o n s u me r s o f L o ng -T er m S er vices U n i t ed S tat e s

and

S upp orts

in the

Two main groups make up the majority of LTSS consumers in the United States: older Americans and adults with disabilities. Each group has specific considerations, but there is some overlap for individuals who are members of both groups. The groups are described further in the two sections that follow; see also the related Current Issue sidebar “LongTerm Care Consumers: Disrupting Ageism and Ableism.”

dressing, toileting, and walking. A person’s ability to perform ADLs determines the level of long-term care needs. instrumental activities of daily living (IADLs) Activities that are not necessary for fundamental functioning but allow people to live independently. Examples include shopping, house cleaning, cooking, and managing finances.

Older Americans

The United States is experiencing a remarkable demographic transformation characterized by unprecedented growth in both the number of older adults and their share of the country’s total population, as illustrated in exhibit 1.1 (Federal Interagency Forum on Aging-Related Statistics 2016). Compared with previous generations, Americans today are living longer, are more racially and ethnically diverse, and are more prosperous. In 2014, 44.7 million Americans—about 15 percent of the US population—were aged 65 or older, and 6 million were aged 85 or older. By 2060, the number of people aged 65 or older is expected to more than double to 98 million, and the number of people aged 85 or older is expected to triple to 18 million. By 2030, 73 million baby boomers (people born between 1946 and 1964) will all be aged 65 or older (America Counts Staff 2019). Rapid growth in this segment is predicted to continue, as is growth in the “oldest old” segment of adults aged 85 or older. Americans aged 65 or older are better educated than ever before. In 1965, 24 percent of older adults had a high school diploma and 5 percent had at least a bachelor’s Copying and distribution of this PDF is prohibited without written permission. For permission, please contact Copyright Clearance Center at www.copyright.com.

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100 90 80 70 60 50 40 30 20 10 0

25

EXHIBIT 1.1 Population Aged 65 or Older and Aged 85 or Older, Selected Years, 1900–2014, and Projected Years, 2020–2060

Millions

2012 2015

5

2020

2025

2030

2035

2040

2045

2050

2060

2030

2035

2040

2045

2050

2060

Percentage of Total Population

20 15 10 5 0

2012 2015

2020

2025

Source: Adapted from Federal Interagency Forum on Aging-Related Statistics (2016), 2.

degree; by 2015, those numbers had risen to 84 percent for a high school diploma, and 27 percent for a bachelor’s degree (Federal Interagency Forum on Aging-Related Statistics 2016). With higher levels of education, older Americans enjoy higher incomes and higher net worth levels. Furthermore, an increasing share of their income comes from earnings as more individuals are working past the age of 65, either from a desire to remain active in the workforce or out of economic necessity. Yet serious income inequalities persist among older Americans, based on differences in gender, social and economic status, education, and race and ethnic background. Older women are more likely to live in poverty than older men, while older Black, Latino, and Asian American men and women are more likely to live in poverty than older white men and women. General improvements in health have yielded improvements in life expectancy (the average number of years remaining to live at a given age) in the twenty-first century, although life expectancy in the United States lags behind many other industrialized nations. Life expectancy varies by gender, race, and socioeconomic status. The impact of COVID-19 on life expectancy is predicted to change these patterns, with a disproportionate impact on Black and Latino populations (Andrasfay and Goldman 2021). Healthy life expectancy at the age of 60 (the expected number of years of healthy life after the age of 60) provides insight into the potential quality of life for older adults. Recent research by the World Health Organization (WHO) found that globally from 2000 to 2016, healthy life expectancy was Copying and distribution of this PDF is prohibited without written permission. For permission, please contact Copyright Clearance Center at www.copyright.com.

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about one quarter shorter than life expectancy. Countries with higher income tended to have higher health expectancy, notably Japan and Singapore, while the continent of Africa made greater strides in improvement in life and health expectancy than most world regions did over this period. Women were found to have higher life and health expectancy than men (He and Dupre 2021). In 2014, the top six causes of death among people aged 65 and older in the United States (heart disease, cancer, chronic lower respiratory diseases, stroke, Alzheimer’s disease, and diabetes) were all chronic health conditions (conditions lasting a year or longer that require ongoing medical care or limit ADLs). Although statistics have shown a decrease in disability and other impairments that restrict the functioning of older adults (CourtneyLong et al. 2015), chronic health conditions contribute significantly to disability and frailty (a condition marked by a lack of resilience to physiological changes and an elevated risk of poor health outcomes). Many, although not all, chronic health conditions are impacted by modifiable health behaviors, including diet, physical activity, and cigarette smoking (Federal Interagency Forum on Aging-Related Statistics 2016). Chronic health conditions are discussed briefly later in this chapter and in greater detail in chapter 7. A d u lt s

with

Disabilities

Adults with disabilities occupy a significant position within the population of long-term care service consumers. According for the Centers for Disease Control and Prevention (CDC 2016), in 2016, 1 in 4 adults in the United States, or 61 million people, reported having a disability falling into any of the following six categories: hearing, vision, cognition, mobility, self-care, or independent living. Disabilities were more common for older adults, women, indigenous peoples, adults with income below the poverty line, and adults living in the southern United States. Veterans living with disabilities also represent a significant portion of this group; according to the US Department of Veterans Affairs (2019), more than 4.5 million veterans reported having service-related disabilities in 2018. Exhibit 1.2 shows measures of US disability populations over time. Non-Hispanic Blacks aged 65 or older were more likely to report living with a disability (26 percent) compared with non-Hispanic whites (21 percent). Hispanics aged 65 or older were more likely to report difficulties with cognition (6 percent) and self-care (5 percent) compared with non-Hispanic whites (5 percent for cognition and 2 percent for self-care) (CDC 2021) Disability increases with age, with 42 percent of people aged 85 or older reporting living with a disability, compared with only 17 percent of people aged 65–74. Adults who had lower education levels, were unemployed, or had lower incomes were also more likely to report living with a disability (Courtney-Long et al. 2015). Annual disability-associated healthcare expenditures were estimated at nearly $868 billion in 2015 (CDC 2021). Such high costs underscore the importance of maintaining the health and functional status of individuals living with disabilities.

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Percent

Percent

100

100 Men

80

60

40

40

20

0

Women

80

60

25 24

20 19 14 3 3

6 8

Any Vision Hearing disability

7

20

20

17

11 2

2

Mo- Commubility nication

3 3

2 2

Cognition

Self– care 2010

4 0

4

3 4

Any Vision Hearing disability

1

1

Mo- Commubility nication

3

3

Cognition

4

3

Self– care

2014

EXHIBIT 1.2 Percentage of People Aged 65 or Older Living with a Disability, By Sex and Functional Domain, 2010 and 2014 Note: Disability is defined as having a lot of difficulty with or not being able to do at least one of the following activities: vision, hearing, walking or climbing steps, communicating, remembering or concentrating, and self-care. Source: Federal Interagency Forum on Aging-Related Statistics (2016), 34.

Historically, the needs of older adults and the needs of adults living with disabilities were addressed through separate laws and by various government organizations. The Older Americans Act (OAA), passed in 1965, created the Administration on Aging to provide seven types of services specializing in the needs of older adults. The Developmental Disabilities Assistance and Bill of Rights Act of 2000 established the Administration on Intellectual and Developmental Disabilities with six programs that supported and empowered individuals living with disabilities in the community. The government altered its approach to these areas in 2012, when the US Department of Health and Human Services established the Administration for Community Living (ACL) as an umbrella agency that included the Administration on Aging, the Administration on Intellectual and Developmental Disabilities, and the Office on Disability. The goal for ACL was to reduce the fragmentation of government services for older adults and adults with disabilities and to encourage common solutions for community-living services and supports (ACL 2022b). The chapter 2 section “History of Long-Term Services and Supports” discusses key legislation and historical developments in depth.

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CURRENT ISSUE Long-Term Care Consumers: Disrupting Ageism and Ableism

ageism

Ageism, meaning stereotypes, prejudice, or discrimination against individuals because

Negative or positive

of their age, is prevalent in modern society and is reflected in popular culture and the

stereotypes, prejudice,

media. People older than the age of 65 are frequently grouped together using general

or discrimination against or to the advantage of

labels such as “the elderly” or “senior citizens” and are subjected to positive, negative, and ambivalent stereotyping that has the effect of masking their individuality as unique

individuals on the basis

human beings. Older adults may be stereotyped as being “sweet” or “cute”; research

of their chronological

demonstrates that such approaches to elders in long-term care can actually increase

age or on the basis of a

their dependence on staff (Coudin and Alexopoulos 2010). Negative stereotypes are

perception of their age.

even more common and include views that elders are “grumpy” or “stubborn” (KotterGrühn and Hess 2012). Ambivalent stereotypes also exist, capturing both positive and negative elements, with the result that elders are often seen as “doddering but dear” (Cuddy and Fiske, 2002, 3). Stereotyping people into groups, as opposed to seeing them as individuals, can lead to prejudice. Examples of prejudice include believing that older adults are incapable or less valuable than younger people. Discrimination goes one step farther and occurs when someone acts on prejudices about others. However, it is important to note that age discrimination has been noted under federal employment laws. The Age Discrimination in Employment Act of 1967 protects individuals aged 40 or older in the workplace. It is important to recognize that ageism can be self-directed, as well as other-directed, and many studies have shown that negative attitudes about one’s own aging process can have harmful health consequences, including reduced recovery from serious illness (Levy et al. 2006) and reduced longevity (Levy et al. 2002). It has also been estimated that the cost of ageism is $63 billion, or one of every seven dollars spent on eight prevalent health conditions for older adults, after adjusting for age and sex (Levy

ableism

et al. 2020). Therefore, it is important for consumers of long-term care and for those

Negative stereotypes,

working in long-term care to be aware of negative societal attitudes toward aging and

prejudice, or

how these may affect individuals and their well-being. Ageism can be explicit, or con-

discrimination against

sciously perpetrated, as well as implicit, or unconsciously perpetrated.

individuals on the basis of their physical or cognitive ability. Ableism can be

Ageism is also associated with ableism, a form of prejudice or discrimination against individuals because of a disability. Ageism and ableism share a common focus on the biomedical aspects of human lives, with a tendency to stigmatize those who do

explicit or implicit and

(continued)

expressed on multiple levels.

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9

CURRENT ISSUE (continued) Long-Term Care Consumers: Disrupting Ageism and Ableism

not meet arbitrary ideals of physical and cognitive ability. This may result in individuals living with disabilities being defined by others based on their physical or cognitive condition, with labels such as “wheelchair bound,” “handicapped,” or “senile.” Like ageism, ableism can be internalized such that individuals living with disabilities absorb negative stereotypes and beliefs about themselves. Proponents of a social, rather than biomedical, model of both age and disability would argue that individuals are disabled not by their age or their physical or cognitive impairments but by barriers in society. These barriers can be attitudinal, such as assuming older people or people living with disabilities can’t do certain things; physical, such as inaccessible buildings and transportation systems; or enshrined in policies and laws (or the lack of them) that limit the opportunities for older people or people living with disabilities. It is important that long-term care providers and individuals pursuing long-term care careers remove these attitudinal, physical, and policy barriers, which can result in older people and people living with disabilities having more independence, choice, and control over their lives.

H i s tory

of

L o n g -T e r m C ar e S er vice D elive ry

To understand the structure of today’s long-term care delivery system, we must first look at the system’s rich history and heritage in the United States. Some research suggests that the time span that began at the end of the nineteenth century has consisted of a series of cycles and concerns in long-term care, with distinct periods of approximately 20 years each (D. Smith and Feng 2010). These cycles have been extended to include seven periods of disruptive activity that shaped the delivery of long-term services and supports. Each period has focused on a specific concern and a supposed legislative solution, and each has contributed to the inadequate safety net of care that still exists today. Exhibit 1.3 provides a timeline showing the seven periods described in the following sections. The First

and

Second Periods

The first period lasted from the late 1800s until the 1930s. During this time, the infirm were placed together in almshouses, sometimes referred to as “poor farms” for elderly “inmates.” Residence in these private boardinghouses allowed those with long-term care needs to be eligible for federal Old Age Assistance, which became the hallmark of the second period— the old-age income security solution. Copying and distribution of this PDF is prohibited without written permission. For permission, please contact Copyright Clearance Center at www.copyright.com.

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EXHIBIT 1.3 Timeline of LongTerm Care Service Delivery

1935–1949

LATE 1800s–1930s

1970–1989

1950–1969

1990–2009

2010–2020

2020–PRESENT

Source: Adapted from D. Smith and Feng (2010).

The second period began with the Social Security Act, passed in 1935. This law provided pensions to older people, but with the stipulation that anyone housed in a public facility such as an almshouse could not receive one. Although the intent of the legislation was to bring about the end of almshouses, the law helped establish voluntary and proprietary nursing homes that accepted people with physical and mental infirmities (Mara and Olson 2008). The Third Period Hill-Burton Act A law under which the federal government provided interest-free loans to healthcare providers interested in building nursing homes affiliated with hospitals, with the provision that they would have to provide charity care in the future for residents.

By the 1950s, new legislation emerged to establish the next phase of public financing for nursing home facility construction and public payment for long-term care services. This third period, which expanded access to affordable health insurance, lasted until 1970. Changes to the Social Security Act permitted payments to public LTC institutions and direct government payments to LTC facilities, which made the industry appealing to smallbusiness owners. In addition, state licensure programs for nursing homes started to appear. The Hill-Burton Act of 1946, as amended in 1954, provided federal grants (along with construction and design guidelines) to public and not-for-profit companies interested in building nursing homes. However, the amendments stipulated that the nursing homes must be affiliated with hospitals, thereby promoting the medical model of care within the nursing home environment. In the late 1950s, the 1959 Housing Act established Section 202, Supportive Housing for the Elderly, and the newly formed American Association of Nursing Homes successfully lobbied Congress to allow for-profit organizations to obtain

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nursing home funding from the Small Business Administration and the Federal Housing Administration. The Kerr-Mills Act of 1960 followed and provided federal–state matching funds for the medically needy, including nursing home residents, and federal money for home care services. The tradition of federal oversight and financing of long-term care carried over into the Great Society legislation of the 1960s. Medicare and Medicaid were signed into law in 1965, and a provision in Medicare covered posthospital “extended care” up to 100 days. The OAA was also passed in the same period, creating the Administration on Aging. Then, in 1967, the Moss amendments to the Social Security Act established new rules and regulations for Medicaid-funded nursing homes to follow.

11

Medicare The federal health insurance program in the United States for individuals aged 65 or older, those on Social Security disability benefits for more than two years, and those living with Lou Gehrig’s disease or end-stage renal (kidney) disease. Medicare covers care

T h e F o u rt h P e r i o d

provided in skilled

The fourth period lasted from the early 1970s through 1989 and further expanded governmental attempts to control provider abuses, while opening the door to providing home and community-based services to long-term care consumers. The Social Security amendments were extended to offer Medicare coverage to individuals living with disabilities; the Supplemental Security Income program was activated in 1974; and, by the late 1970s, certificate-of-need programs and amendments to the Medicare and Medicaid antifraud and abuse provisions were enacted. In 1983, concern about escalating healthcare costs led to the creation of Medicare diagnosis-related groups, which limited payments to hospitals and helped move post-acute care to ambulatory care and nursing home facilities that had few payment limitations. Section 1915 of the Social Security Act was added in 1983 and gave states the option of receiving a waiver from Medicaid to provide funding for home and community-based services. In 1987 with the passage of the Omnibus Budget Reconciliation Act, nursing home reforms were enacted, creating the State Survey and Enforcement System for nursing homes.

nursing facilities for up to 100 days, as well as home care. Medicaid A means-tested federal insurance program in the United States that pays for medical care and other supportive services for lowincome individuals, people living with disabilities, and poor older persons. The states administer their programs under broad federal guidelines.

The Fifth Period

The fifth period extended from 1990 up through 2009. Its early phase in the 1990s was a time of market-based reforms, innovative demonstration programs, and expansion of private insurance for long-term care expenses. The Americans with Disabilities Act, which extended protection to persons with disabilities, was passed by the US Congress in 1990. In 1997, Congress passed the Balanced Budget Act, which established the Prospective Payment System for Medicare-funded posthospital services. In 2004, quality indicators were established for nursing homes that accept Medicare payments. The US Supreme Court’s 1999 Olmstead v. L.C. decision, which prohibited unnecessary institutionalization of persons living with disabilities, provided the impetus for the expansion of home and community-based services. By 2017, nearly 58 percent of Medicaid

Section 1915 of the Social Security Act A 1983 amendment to the Social Security Act that allowed states to obtain a waiver from Medicaid to provide home and communitybased services.

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expenditures were for services provided in noninstitutional settings, as reported by the Medicaid and CHIP Payment and Access Commission (MACPAC 2020). New homelike models of care evolved, such as assisted living, Eden Alternative housing, and Green House Project cottages (discussed further in chapter 4). Despite these innovations, financial challenges remained. The cost of long-term services for all individuals who needed them, regardless of DID YOU KNOW? their geographic location or income, continued to The White House Conference on Aging strain government and family budgets. Since the early 1960s, the White House Conference on Aging (WHCOA) has been held during every decade to identify and

The Sixth Period

The sixth period began with the passage of the Affordable Care Act (ACA) in 2010 and lasted States. The conference brings together major stakeholder until early 2020. The ACA helped focus attengroups associated with aging, including policymakers, politition on the integration and coordination of LTSS, cal leaders, not-for-profit advocacy groups, service providers, as well as on opportunities to innovate service academics, consumers, and the press. The first White House delivery and reimbursement. The creation of the Conference on Aging, in 1961, led to the passage of Medicare, Administration for Community Living in 2012 Medicaid, and the Older Americans Act; later conferences (in provided an opportunity for leaders in aging and 1971, 1981, 1995, 2005, and most recently 2015) led to the credisability service provision to deliver programs ation of the National Institute on Aging, the federal Meals on that benefit both LTSS consumer populations. In Wheels program, and amendments to the Social Security Act addition, a new focus on preventive care service that improved social services for older adults, as well as other and primary care services delivery, innovative uses initiatives (WHCOA 2016). The WHCOA forum provides a valuof technology for LTSS delivery, and support for able opportunity for the exchange of ideas and suggestions for informal caregiver services continues to benefit the delivery of aging-related services. these consumers. The 2015 White House Conference on Aging (WHCOA 2016) commemorated the eightieth anniversary of the Social Security Act and the fiftieth anniversary of the OAA, Medicare, and Medicaid (see related “Did you COVID-19 pandemic Know?” sidebar on the WHCOA). advance issues of importance for older adults in the United

A worldwide epidemic in the twenty-first century resulting from the spread of a particular SARS CoV-2 (coronavirus) strain and its subsequent mutations that impacted healthcare and senior living providers as well as global economies.

The Seventh Period

The onset of the COVID-19 pandemic in 2020 opened new concerns about long-term service and support delivery. Growing awareness of health as well as racial disparities affecting older adults emerged during the pandemic, as well as the limitations of health care and long-term care providers to adequately address service delivery needs. The American Rescue Plan of 2021 provided $1.43 billion for OAA programs such as nutrition services, family caregiver support, health promotion, and disease prevention, as well as support for resident rights in long-term care communities and programs to combat elder abuse (ACL 2022a).

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“The COVID-19 pandemic has exposed and exacerbated long-standing challenges impacting the long term care (LTC) profession,” observed the American Health Care Association and LeadingAge in the introduction of their publication Care for Our Seniors Act: Improving America’s Nursing Homes by Learning from Tragedy and Implementing Bold Solutions for the Future (LeadingAge 2022b). LeadingAge, a consortium of not-for-profit LTSS organizations, concurrently released the Blueprint for a Better Aging Infrastructure, “a series of recommendations that address the economic, social, and racial inequities older Americans face by expanding access to long-term care at home and in our communities; increasing affordable housing for older adults; investing in the physical and technological infrastructure of aging services—including high-speed broadband access; and addressing the fundamental need to better support and grow our nation’s aging workforce” (LeadingAge 2022a). CMS (2022) also released its Framework for Health Equity 2022–2032 to “design, implement, and operationalize policies and programs to support health for all people . . . eliminating avoidable differences in health outcomes experienced by people who are disadvantaged or underserved, and providing the care and support that they need to thrive.”

13

American Rescue Plan of 2021 Stimulus legislation passed in 2021 to help the US economy recover from the impact of COVID-19 and provide assistance for aging and disability services. aging process Changes in all realms of a human being’s development and functioning, including the biological, psychological,

A g i n g , D i s a bi l i t y ,

and

C h ro nic H ea lth C onditi ons

To understand the LTC service delivery system, you must first have a foundation of knowledge about the aging process; the components of functioning and disability as defined by the WHO’s International Classification of Functioning, Disability, and Health (ICF); and dominant chronic health conditions. Recall that a chronic health condition is a health condition lasting for a year or longer that requires ongoing medical care, limits an individual’s activities of daily living, or both. Changes in the functions and capabilities of the body are critical determinants of service provision and reimbursement. Geriatrics is the branch of medicine that deals with the health and care of older adults. A physician who specializes in this area is called a geriatrician. Geriatricians are specifically trained to recognize and treat aging-related physiological changes and clinical syndromes, provide team-based care and systems for older adults and their family support systems, take a clinical focus that emphasizes functional status and a holistic approach to health, and use shared decision making that places the older patient’s goals and preferences at the center of care. There is currently a serious shortage of geriatricians in the United States as well as a serious shortage of other healthcare professionals, such as nurses, who have advanced geriatric training. This means that older people are likely to receive treatment from healthcare professionals with limited knowledge and expertise of the aging process. Gerontology is the scientific study of the aging processes from a biological, psychological, social, and spiritual perspective and includes the study of how individuals, populations, and societies age. Gerontology is a multidisciplinary field, with biology, psychology, and sociology forming the core areas of study, with contributions from many other areas of study, including public policy, the humanities, and economics. Specialists in gerontology,

social, and spiritual dimensions, that occur over the entire life span from birth to death. Such changes are influenced by a mix of genetic, environmental, social, and behavioral factors, including access to healthcare services.

chronic health condition A health condition lasting for a year or longer that requires ongoing medical care, limits an individual’s activities of daily living, or both. geriatrics A specialized branch of medicine addressing the health and care of older adults.

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gerontology The scientific study of aging from a biopsychosocial and spiritual perspective, including

D i m e n s i o n s o f L o n g - Te r m C a r e M a n a g e m e n t

called gerontologists, strive to improve the quality of life and promote the well-being of individuals as they grow older within their families, communities, and society. Gerontologists are involved in many types of work, including research, education, and the application of interdisciplinary knowledge of the aging process and aging populations. Many colleges and universities offer degree programs for students interested in becoming gerontologists.

how individuals, communities, and societies age.

Genetic

and

E n v i ro n m e n ta l F a c t or s

The way an individual ages depends on a variety of genetic and environmental factors, as well as on access to healthcare services. About 20 percent of a person’s health is attributable to genetics, about 20 percent to the medical care received, and the other 60 percent to social, behavioral, and environmental factors, many of which people can and do influence by the choices made throughout life (Jenkins 2016). Physical Signs

of

Aging

As a person ages, the body undergoes a series of gradual changes in most body systems, including the circulatory, nervous, respiratory and digestive systems. Changes in a person’s height, skin, and senses (e.g., vision, hearing) are normal parts of the aging process. There is a progressive decrease in the body’s physiological capacity and a reduced ability to respond to environmental and other stresses, which leads to an increased susceptibility to disease that ultimately results in an increase in all-cause mortality as individuals grow older. However, it is important to recognize that aging is not synonymous with disease and that declines in health are not inevitable. Instead, we can approach health as a tool for living our best life (Jenkins 2016). The Affordable Care Act’s emphasis on health promotion and wellness complements this idea. It encourages older adults to move away from being dependent patients and toward becoming empowered consumers seeking a partnership with their physicians and other healthcare providers (Jenkins 2016). Disabling Conditions

According to the CDC (2020), a disability is defined as “any condition of the body or mind (impairment) that makes it more difficult for the person with the condition to do certain activities (activity limitation) and interact with the world around them (participation restrictions).” Disability can be a multidimensional experience, and three dimensions of disability are recognized by the World Health Organization: (1) impairment, (2) activity restrictions, and (3) participation restrictions (CDC 2020). Disabilities may be acquired at birth or developed later in life. The way people view disabilities has evolved over time. Today, living with a disability is viewed as a social construct that relates to barriers created by society, not as a medical problem or condition.

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Disability studies involves interdisciplinary approaches grounded in social science that look at the meaning, nature, and consequences of disability as a social construct. College and university programs have shown a growing interest in this area of LTC training.

15

disability studies An interdisciplinary field of study that examines the meaning, nature, and consequences of

C h ro n i c H e a lt h C o n d i t i o n s

and

W e ll n e s s

Chronic health conditions can affect both physical and intellectual functioning and can be medical or psychological in nature. Common chronic health conditions include arthritis, cancer, depression, diabetes, heart disease, hypertension, and respiratory illness. Chronic health conditions are major causes of hospital readmissions in the United States and have received increasing attention in healthcare reform policies. The emergence of a growing number of individuals with multiple chronic health conditions has become an important issue. These individuals require interdisciplinary care coordination to maintain and improve their quality of life (Goodman et al. 2013). The COVID-19 pandemic raised awareness of the impact of social isolation on the relationships of older adults and the importance of wellness programs, including services to maintain physical and mental health. Having long-term care communities that address wellness of their residents through comfortable, age-friendly features will grow in importance (International Council on Active Aging 2021). Chapter 8 provides a more extensive review of wellness services and chronic health conditions, including their impact on LTC service delivery.

M o d el s

of

disability as a social construct.

L o n g -T e r m C ar e D elive ry

As the US population ages, an expansion in the scope and depth of LTC services is driving changes in the provision and delivery of these services. A growing proportion of services are now provided in the home and in other community-based settings, rather than in traditional residential or acute care environments such as nursing homes or hospitals. To facilitate reimbursement, many providers have organized their activities around a continuum of long-term care. This continuum is defined as “a [holistic] system composed of both services and integrating mechanisms that guides and tracks clients over time through a comprehensive array of health, mental health, and social services spanning all levels of intensity of care. . . . It includes mechanisms for organizing those services and operating them as an integrated system” (Evashwick 2005, 4). This continuum helps individuals understand and organize their thinking about the provision of LTSS. However, issues involving treatment and payment for chronic illness and the increasing complexity of the reimbursement system for long-term care (especially services provided on an informal basis) may require different approaches as the baby boomers and generations that follow prefer to live independently in the community.

continuum of longterm care A holistic system comprising services and mechanisms that assist individuals over time with a wide range of physical health, mental health, and social services needs across all levels of care intensity.

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single access point (SAP) model A model of long-term care in which patients can obtain all the services they need through one agency or organization. No Wrong Door policy A policy established in 2012 by the ACL, CMS, and the VHA to provide a one-stop, single access point, coordinated system of care that empowers individuals to make informed decisions, to exercise control over their long-term care needs, and to achieve their personal goals and preferences. dimensions of care model A fluid, nonlinear approach to long-term care that acknowledges the services identified in the continuum of care model, allows consumers to have a single point of entry into the LTC delivery system, and emphasizes the option for LTC consumers to use technology and supportive services to remain independent

D i m e n s i o n s o f L o n g - Te r m C a r e M a n a g e m e n t

Since the 1990s, some states have moved to a single access point (SAP) model for long-term service delivery. The SAP model is also known by various other names, such as single entry point and aging single-access point. Regardless of the terminology used, under the SAP model, individuals can obtain all service referrals and service administration through just one provider organization. The SAP concept is discussed further in chapter 2. In 2012, the ACL, the Center for Medicare & Medicaid Services (CMS), and the Veterans’ Health Administration (VHA) established a No Wrong Door policy that enabled all people, regardless of age, income, or disability to obtain long-term services and supports through a single access point. This is a one-stop, coordinated system of care that empowers individuals “to make informed decisions, to exercise control over their long-term care needs, and to achieve their personal goals and preferences” (No Wrong Door 2022). As of 2022, there were 56 states and territories participating in NWD activity, 1,322 access points, and 33 states with legislative/governor support (No Wrong Door 2022). A similar model for the delivery of LTSS is the dimensions of care model, shown in exhibit 1.4. This model includes the services identified in the continuum of care model, allows consumers to have a single point of entry into the LTC delivery system, and emphasizes the option for consumers to use technology and supportive services to assist them in living independently in the community and in maintaining a high quality of life. The emphasis on technology differentiates the dimensions of care model from other service models. Because this model promotes the use of technology and other supportive services to help older adults and individuals living with disabilities remain independent in their homes and neighborhoods, it may be more flexible than other models if the availability of caregiving supports (especially informal supports) declines. However, the choice of how to use technology in LTSS delivery always belongs with consumers, and the person-centered care process acknowledges and supports their beliefs and traditions. The dimensions of care model is fluid and nonlinear in that it acknowledges that individuals may consume services in acute and long-term care environments as well as in community-based settings, much like an interconnected ecosystem. It also acknowledges the value of care coordination with the assistance of technology throughout these service transitions. Though no model of LTC service provision is ideal in explaining the consumption of services, the dimensions of long-term care model gives consumers greater flexibility to select services that enable them to live independently in the community, or in their choice of setting, and enjoy greater quality of life. It forms the basis for the organization of this book.

within their community.

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EXHIBIT 1.4 Dimensions of Long-Term Care Model

Technology

Client Home and CommunityBased Services

Residential Services

© Mary Helen McSweeney-Feld

Key Aspects

of

L o n g -T e r m C a re

In this final section of the chapter, we briefly examine several key aspects of long-term care: where long-term services and supports are provided; kinds of organizations that provide LTSS; who pays for LTSS; and quality and safety in long-term care services. W h e r e L o n g -T e r m S e r v i c e s

and

S u p p ort s

are

P ro v i d e d

Long-term services and supports are typically provided in the following types of settings: ◆◆ Acute care ◆◆ Ambulatory care ◆◆ Home and community ◆◆ Residential ◆◆ Outreach and linkage ◆◆ Technological Care planning and care coordination services help consumers and their families navigate this range of options for service delivery. The list represents a consolidation and extension of earlier service models and incorporates new developments in

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LTSS, in addition to the use of technology to link service providers to consumers. (See the related Current Issue sidebar “Long-Term Care Settings: Rural Versus Urban Communities.”)

CURRENT ISSUE Long-Term Care Settings: Rural Versus Urban Communities

Rural areas present special challenges to the delivery of long-term care services. There are 46.2 million older people in the United States, with 10.6 million in areas designated as rural. More than 20 percent of older Americans live in rural areas, many concentrated in states where more than 50 percent of their older populations are in rural areas (A. Smith and Trevelyan 2019). Mostly rural counties with high concentrations of elders were located in the eastern half of the United States (with Vermont and Maine having the largest rural populations), while completely rural counties were in the middle of the United States, forming a path from North Dakota to Texas (A. Smith and Trevelyan 2019). Rural elders, on average, are older than their urban counterparts, with many elders belonging in the “oldest old” category (aged 85 or older). Diversity trends seen in the urban US population have also affected rural areas, with immigration of elders from Latin America and Asia (Gurak and Kritz 2013). Among rural elders’ challenges are insufficient transportation options, a limited number of care providers (especially physicians), and inadequate funding for community-based social and health services. In addition, poor older adults in rural areas often face challenging living conditions as well as social isolation. The mix of residential and community-based providers for LTC services is also different in rural areas. Rural elders are less likely to use a nursing home than an assisted living facility (ALF) because of both income constraints and limited availability. They are more likely to rely on Medicaid than are urban elders, which means rural nursing homes generally have fewer services and higher utilization rates than urban nursing homes do. The same situation exists with rural ALFs: They tend to offer less privacy and fewer services than their urban counterparts. Many LTC services, such as skilled nursing care, are provided in rural institutional settings such as critical access hospitals. Choices for nonresidential care services are also limited in rural areas. Home health care agencies are fewer in number, are more likely to use nursing aides, and offer a smaller variety of services. However, the growth of telehealth services (healthcare services provided via the internet or other telecommunications technologies) has helped spread knowledge and use of community-based services in remote areas.

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Kinds

of

O r g a n i z at i o n s

t h at

P ro v i d e

19

lt s s

Healthcare systems, nursing homes, and other residential care organizations such as assisted living facilities (ALFs) provide a large proportion of long-term care services. (ALFs are discussed in chapter 4.) However, a growing number of services are delivered through home and community-based programs. These providers may be privately owned for-profit entities such as Brookdale Senior Living, LCS and Holiday Retirement; not-for-profit organizations such as The Arc, United Cerebral Palsy, or Visiting Nurse Services; governmental entities such as the Area Agencies on Aging, Disabilities Administrations, or Veterans Affairs facilities; or faith-based organizations such as Catholic Charities, Jewish Federations, or the Lutheran Diakon. As the use of assistive technology as an option in the provision of LTSS grows, the list of organizations providing such technology may include small start-up companies as well as established computer, telecommunications, and pharmaceutical firms looking to expand their markets and services. W h o P ay s

f or

LTSS

Payment for formal LTSS in the United States comes primarily from government sources such as Medicaid, Medicare, and other public programs. According to the Congressional Research Service, total national spending on LTSS was about $409.3 billion in 2018 (Colello 2020). Medicaid covered 44.1 percent of total expenditures ($180.5 billion), Medicare paid 20.4 percent ($83.7 billion), other public programs paid 6.2 percent ($25.6 billion), consumers’ out-of-pocket funds (i.e., payments for services made directly by individuals) covered 14.9 percent ($61.1 billion), other private programs paid 6.2 percent ($25.0 billion), and private insurance (commercial insurance, managed care plans, and LTC insurance plans) accounted for 8.2 percent ($33.4 billion). Quality

and

Safety

in

L o n g -T e r m C a r e S e r v i c e s

The quality of LTSS has been a growing concern, and the COVID-19 pandemic raised awareness of the problems in ensuring quality and safety for long-term care consumers, especially those living in congregate settings. CMS has attempted to address this issue through regulations affecting the assessment of long-term care needs, new emergency preparedness and infection control requirements, sufficient staffing of LTC services, and the requirement for all long-term care providers covered under the Medicare Conditions of Participation to have a quality assurance and performance improvement plan. (Conditions of Participation are discussed in detail in chapter 14.) States have also increased their regulation of assisted living communities and other residential options for consumers. Additional initiatives will result from ACA provisions, the Medicare Innovation Center’s work to examine new alternatives for providing LTSS, and other private organizations such as the Institute for Healthcare Improvement (IHI), and the Baldrige Excellence Framework. Chapter 16 provides an extended overview of that topic.

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A L ook A h e a d The outlook for healthcare reform and its impact on LTSS is mixed. The LTC delivery system remains fragmented and patched together, and an increasing number of clients will likely enter the system as America ages. Like many European and Asian countries, the United States is facing the strains of response to the COVID-19 pandemic, declining tax revenues, expensive public health and retirement programs, and rapid growth in the population of people eligible to collect benefits from these programs. The need to address health disparities and health equity in the US healthcare delivery system emerged during this period, with CMS’s new Framework for Health Equity defining the priorities for addressing these issues in all healthcare services, including LTSS (CMS 2022). However, the passage of the Affordable Care Act, the reauthorization of the Older Americans Act, and proposals by the Biden administration and changes in CMS’s policies to enhance funding for home and community-based services for older adults and persons with disabilities provide a philosophical foundation for wellness and health promotion throughout all stages of our lives. The growth of population health initiatives started under the ACA also raises the importance of addressing chronic health conditions. At the same time, providers are looking at new options for the provision of care and services, such as greater use of technology (especially telehealth services) and shared resources in community settings. These options have spurred growth in new industries and created new job opportunities for individuals interested in providing care to the growing market of LTSS.

F or D i s c u s s i o n 1. What is long-term care (LTC), and who are long-term care consumers? 2. What is the difference between formal and informal long-term services and supports (LTSS)? 3. What are ageism and ableism? What is their impact, and why is it important to be aware of them? 4. Describe the process of accessing LTSS, and how it has evolved to a more coordinated, person-centered system of care. 5. What are the periods of care in the history of LTC service delivery, and why are they significant? 6. What are activities of daily living, and why are they used as determinants of need for LTSS? 7. In what settings are LTSS provided, and which settings may become more important in the future? 8. What are some limitations faced by agencies and community organizations that provide LTSS in rural areas?

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9. Identify two major payers for LTSS in the United States. What are out-of-pocket expenditures for long-term care, and who pays them? 10. What measures have been taken by CMS and other organizations to monitor the quality and safety of LTSS?

Case Study: Community Asset Mapping Jillian Warriner Sharp HealthCare is one of the dominant health systems serving the county of San Diego, California. It is the only major health system that focuses specifically on health for older adults. Sharp serves San Diego County with four acute care hospitals, three specialty hospitals, three affiliated medical groups, and a commercial health plan (Sharp Health Plan) that provides individual and family plans, employer-sponsored group plans, and Medicare plans, including a Medicare Advantage plan. Further, Sharp is also a leading provider of care for the Medi-Cal (Medicaid) population in San Diego County, and for Covered California (California’s state Medicaid program). Sharp recognizes the importance of providing an effective population health program for older adults, with some services offered directly, some through formal partners, and some through informal referrals. Currently, Sharp operates two Senior Health Centers (SHCs) and two Senior Resource Centers. The SHCs offer clinical services from geriatricians and geriatric nurse practitioners as well as an array of other services tailored specifically for older adults. Each of the SHCs has arrangements with local community providers who offer health-related and social services. Sharp’s Senior Resource Centers are on-site departments at two of its acute care hospitals. They engage primarily in education, outreach, screening, and support for senior patients and community members; they do not offer clinical services. As the aging population of San Diego County grows, Sharp is considering adding a third SHC to serve the community. This decision would be consistent with the findings of its recent community health needs assessment (Sharp HealthCare 2019). Identifying and evaluating specific community assets are critical components of the program proposal. The staff has begun to gather an array of data to determine the location, service package, and community partners appropriate for the new SHC. The challenge is to determine where the center should be located, what specific programs and services it should offer, and which organizations would be appropriate community partners in building a robust care transitions program for older adults as well as their caregivers. In evaluating the options for a new SHC, Sharp must answer the following three questions: 1. Where in San Diego County should the center be located, based on current and projected demographics?

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2. What services should Sharp offer directly on-site? 3. What services should Sharp offer through collaboration with community partners? Needs

of

O l d e r A d u lt s

People aged 65 or older require specialized care and often have multiple, complex, chronic health conditions that complicate performing activities of daily living (e.g., eating, bathing, dressing) as well as care delivery and transitions and medication management. Older adults who lack a caregiver at home or who are otherwise socially isolated face increased fall risk, greater behavioral health risks, and more significant cognitive decline, as well as gaps in meeting their social determinants of health, such as transportation to medical appointments and access to nutritious food. Care Transitions

and

C a r e C oor d i n at i o n

An array of services is necessary to meet the multiple needs of older adults. Elders might spend five days in a hospital, but for the remaining 360 days of the year they receive care at home and tap into community resources. In considering a new SHC, Sharp must determine what additional age-related services are important to its patients, as well as which community-based organizations (CBOs) offer those services. Moreover, in light of the various payment programs that Sharp offers older adults, the new center’s financial viability is affected by how CBO partnerships are formed, how they are managed for financial efficiency, and what measures are used to assess the success of the center. Asset Mapping

The likely geographic location for Sharp’s next SHC is “South County,” the area in the southern end of San Diego County. To assess potential partners for either formal or informal relationships, Sharp must first identify the agencies that are already serving older adults in this general area as well as partners in other parts of San Diego County that could potentially expand to collaborate with the new SHC if the volume and funding were sufficient to attract their investment. Sharp embarks on asset mapping using hospital discharge disposition data (exhibit 1.5) as well as a model for mapping this discharge information. Sharp’s asset mapping includes the following steps: 1. Mapping the service area. Sharp uses internal hospital discharge data to map its service area—that is, the communities (often at the zip code level) where its patients reside and the types of services most commonly used after discharge (as listed in exhibit 1.5). 2. Identifying potential partners. The types of agencies or partners sought are based on the need for effective care transitions and care coordination. Sharp Copying and distribution of this PDF is prohibited without written permission. For permission, please contact Copyright Clearance Center at www.copyright.com.

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Discharge Disposition

Aged 64–74

Aged 75–84

Aged 85+

Total

Home/self-care (routine)

55.89%

44.24%

29.24%

44.79%

Skilled nursing

17.44%

24.22%

31.63%

23.53%

Home health service

14.96%

18.84%

21.29%

17.94%

All other

6.55%

8.00%

12.56%

8.69%

Short-term acute

2.25%

2.12%

1.98%

2.13%

Board/care residential

0.74%

0.40%

0.37%

0.53%

Rehab

0.69%

0.74%

0.66%

0.70%

Long-term acute

0.62%

0.64%

0.32%

0.54%

Psychiatric hospital

0.49%

0.20%

0.06%

0.28%

Assisted living

0.37%

0.60%

1.89%

0.87%

23

EXHIBIT 1.5 Sharp Hospital Discharge Dispositions for Patients Aged 64 or Older, 2017

Source: Sharp HealthCare (2019).

begins by asking hospital staff—including social workers, case managers, and discharge planners—which agencies currently serve as collaborators to address patients’ needs upon discharge. Sharp may also check with 211 San Diego, the San Diego Department of Health and Human Services office serving that region, Aging and Independence Services, and other current partners to obtain contact information for new CBOs with which it might collaborate. Sharp conducts key informant interviews with nurses or administrators of physician practices in the area, and it contacts local churches to ask what social support services might be available. Sharp’s planners also meet with representatives from the county’s Department of Transportation to learn about public transportation routes, dial-a-ride programs, and local proprietary agencies, ranging from taxis to ride-sharing companies. 3. Evaluating partners. Armed with a list of potential community assets, Sharp’s planning staff begin the process of evaluating each of the potential partners Copying and distribution of this PDF is prohibited without written permission. For permission, please contact Copyright Clearance Center at www.copyright.com.

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for quality indicators, reputation, financial stability, service area, and capacity of staff to provide services, as well as power within the community. For most services, accreditation or licensing bodies provide information and metrics on select criteria. However, each service has distinct accreditation or quality measures, so a separate assessment is done for quality. In addition, potential partners must meet criteria for risk and financial performance. Sharp must project the approximate demand for each service based on the total client pool expected at the SHC, as well as the health and social needs (i.e., the social determinants of health) likely to be observed. The selection of CBO partners must have the capacity to meet the needs of the projected patient volume. Additionally, the CBOs must have their own incentives to participate in a collaborative effort with Sharp. F i n a n c i a l A rr a n g e m e n t s

The proportion of payments for Sharp’s two existing SHCs is shown in exhibit 1.6. The new center is expected to be financed primarily through managed care health plans, including Medicare, Medicare Advantage, Medi-Cal (Medicaid), and other government programs. The financial composition is anticipated to be in relation to the demographics of the area. In addition to the incentives associated with payment through Medicare Advantage, Sharp has a financial interest in improving care transition and care coordination as a way to reduce avoidable costs. For instance, significant cost savings can be achieved when CBO programs and support serve as a supplement to patients’ medical care, helping to meet the EXHIBIT 1.6 Payment Arrangements for Sharp’s Existing Senior Health Centers

Sharp Senior Health Center: Claremont Category

Percent

Medicare (traditional)

88.14%

Medicare Advantage

  6.76%

Dual Medicare & Medi-Cal

  4.90%

Other government

  0.11%

HMO

  0.05%

Self-pay

  0.03%

PPO

  0.02% continued

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Sharp Senior Health Center: Downtown Category

Percent

Medicare (traditional)

36.89%*

Dual Medicare & Medi-Cal

49.12%

Medicare Advantage

12.88%

Self-pay

1.04%

PPO

0.07%

25

EXHIBIT 1.6 Payment Arrangements for Sharp’s Existing Senior Health Centers (continued)

*In 2017, nearly 18 percent of this category was aligned with Sharp HealthCare’s NextGen accountable care organization. HMO: health maintenance organization; PPO: preferred provider organization. Source: Data from Sharp Healthcare (2019).

social determinants of health of patients after discharge from the hospital. Such services not only can help patients avoid inpatient readmissions and emergency room visits; they can also enable older adults to thrive in the management of their health outside the hospital walls, thus greatly improving quality of life. Sharp’s SHC team has compiled a wealth of data related to the location, services, partners, and expected financial performance of the new center, but decisions about each of these areas remain to be made. The staff submit their report and recommendations to the leadership team of Sharp HealthCare and await the results.

Case Study Questions 1. What is asset mapping? Why is it important in facilitating care transitions and care coordination? 2. What are social determinants of health, and how can addressing these patient needs improve their coordination of care? 3. How many organizations should Sharp identify as potential partners for its Senior Health Center? Which ones should be the highest priority? What criteria should they use to decide? 4. Once Sharp establishes relationships with partners and starts operation of its new SHC, what criteria and methods will it use to evaluate the success of those partnerships? Source: Case study adapted from Evashwick and Turner (2020).

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Coudin, G., and T. Alexopoulos. 2010. “‘Help Me! I’m Old!’ How Negative Aging Stereotypes Create Dependency Among Older Adults.” Aging & Mental Health 14 (5): 516–23. https:// doi.org/10.1080/13607861003713182. Courtney-Long, E. A., D. D. Carroll, Q. C. Zhang, A. C. Stevens, S. Griffin-Blake, B. S. Armour, and V. A. Campbell. 2015. “Prevalence of Disability and Disability Type Among Adults— United States, 2013.” Morbidity and Mortality Weekly Report 64 (29): 777–83. Cuddy, A. J. C., and S.T. Fiske. 2002. “Doddering but Dear: Process, Content, and Function in Stereotyping of Older Persons.” In Ageism: Stereotyping and Prejudice Against Older Persons, edited by T. D. Nelson, 2–26. Cambridge, MA: MIT Press. Evashwick, C. 2005. The Continuum of Long-Term Care, 3rd ed. New York: Delmar. Evashwick, C. J., and J. S. Turner. 2020. Case Studies in Population and Community Health Management. Chicago: Health Administration Press. Federal Interagency Forum on Aging-Related Statistics. 2016. Older Americans 2016: Key Indicators of Well-Being. Washington, DC: US Government Printing Office. https://agingstats.gov/docs/LatestReport/Older-Americans-2016-Key-Indicators-of-WellBeing.pdf. Goodman, R. A., S. F. Posner, E. S. Huang, A. K. Parekh, and H. K. Koh. 2013. “Defining and Measuring Chronic Conditions: Imperatives for Research, Policy, Program, and Practice.” Preventing Chronic Disease 10: 120239. Gurak, D. T., and M. M. Kritz. 2013. “Elderly Immigrants in Rural America: Trends and Characteristics.” In Rural Aging in 21st Century America, edited by N. Glasgow and E. H. Berry, 331–52. Dordrecht, Netherlands: Springer. He, W., and S. Dupre. 2021. “Around the World, Living Longer and Healthier Depends Largely on Gender and Countries’ Income.” A Long Life Does Not Always Mean a Healthy Life in Old Age,. US Census Bureau. Published May 26. www.census.gov/ library/stories/2021/05/long-life-does-not-always-mean-a-healthy-life-in-old-age. html.

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Hooyman, N., and H. A. Kiyak. 2011. Social Gerontology, 9th ed. Boston: Allyn and Bacon. International Council on Active Aging. 2021. Future-Proof Your Senior Living Community. Published January. www.icaa.cc//data/product/8221_aecd97f0aa99088672a5cda727b404b8.pdf. Jenkins, J. 2016. Disrupt Aging. Philadelphia, PA: Public Affairs/Perseus Book Group. Kotter-Grühn, D., and T. M. Hess. 2012. “The Impact of Age Stereotypes on Self-Perceptions of Aging Across the Adult Lifespan.” Journals of Gerontology: Series B 67 (5): 563–71. https://doi.org/10.1093/geronb/gbr153. LeadingAge. 2022a. Blueprint for a Better Aging Services Infrastructure. Accessed May 27. https://leadingage.org/sites/default/files/LeadingAge_Blueprint%20Aging%20Infrastructure.pdf. ———. 2022b. Care for Our Seniors Act: Improving America’s Nursing Homes by Learning from Tragedy and Implementing Bold Solutions for the Future. https://leadingage.org/ sites/default/files/Overview%20-%20Care%20for%20Our%20Seniors%20Act.pdf. Levy, B. R., M. D. Slade, E. Chang, S. Kannoth, and S. Wang. 2020. “Ageism Amplifies Cost and Prevalence of Health Conditions.” Gerontologist 60 (1): 174–81. Levy, B. R., M. D. Slade, S. Kunkel, and S. V. Kasl. 2002. “Longevity Increased by Positive Self-perceptions of Aging.” Journal of Personality and Social Psychology 83 (2): 261–70. Levy, B. R., M. D. Slade, J. May, and E. A. Caracciolo. 2006. “Physical Recovery After Acute Myocardial Infarction: Positive Age Self-Stereotypes as a Resource.” International Journal of Aging and Human Development 62 (4): 285–301. Mara, C. M., and L. K. Olson (eds.). 2008. Handbook of Long-Term Care Administration and Policy. Boca Raton, FL: Taylor and Francis Group. Medicaid and CHIP Payment and Access Commission (MACPAC). 2022. “Exhibit 3: National Health Expenditures by Type and Payer, 2019.” In MACStats: Medicaid and CHIP Data

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Book, 9–11. Accessed May 27. www.macpac.gov/wp-content/uploads/2020/12/ EXHIBIT-3.-National-Health-Expenditures-by-Type-and-Payer-2019.pdf. No Wrong Door. 2022. “Our Story.” Administration for Community Living. Accessed May 27. https://nwd.acl.gov/index.html. Sharp HealthCare. 2019. “Community Health Needs Assessments.” Accessed May 30. www. sharp.com/about/community/community-benefits/health-needs-assessments.cfm. Smith, A. S., and E. Trevelyan. 2019. “In Some States, More Than Half of Older Residents Live in Rural Areas.” Published October 22. Older Population in Rural America, US Census Bureau. www.census.gov/library/stories/2019/10/older-population-in-rural-america. html. Smith, D. B., and Z. Feng. 2010. “The Accumulated Challenges of Long-Term Care.” Health Affairs 29 (1): 29–34. US Department of Veterans Affairs. 2019. Statistical Trends: Veterans with a Service-Connected Disability, 1990–2018. Published May. www.va.gov/vetdata/docs/Quickfacts/ SCD_trends_FINAL_2018.pdf. White House Conference on Aging (WHCOA). 2016. “About the Conference.” Updated February 3. https://archive.whitehouseconferenceonaging.gov/home/about/index. html.

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CHAPTER 2

LONG-TERM CARE AFTER THE AFFORDABLE CARE ACT Mary W. Carter, PhD, Patricia M. Alt, PhD, and Mary Helen McSweeney-Feld, PhD

Learning Objectives After completing this chapter, you should be able to ➤➤ describe the impact of the Affordable Care Act (ACA) on the delivery of long-term services and supports (LTSS) for older adults and adults with disabilities; ➤➤ describe the history and evolution of major programs and legislation providing LTSS in the United States; ➤➤ discuss key programs through the ACA and explain how each supports community-based living for older adults and adults with disabilities; ➤➤ identify adults with multiple chronic health conditions and adult populations with disabilities and explain the role of the ACA in improving access to services; ➤➤ define dually eligible adult populations and discuss reforms under the ACA addressing access and delivery of LTSS for these individuals; ➤➤ describe the impact of the ACA on nursing home quality and transparency, workforce development, long-term care consumer quality and safety, and home and communitybased services; and ➤➤ discuss future challenges and opportunities for improving long-term care in the United States, including the response to the COVID-19 pandemic by long-term care providers. 30 Copying and distribution of this PDF is prohibited without written permission. For permission, please contact Copyright Clearance Center at www.copyright.com.

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In the 2010s and 2020s, long-term care (LTC) policy in the United States has been impacted by a number of significant changes. In 2010, the United States Congress passed the Affordable Care Act (ACA), the most expansive reform in US healthcare policy since the implementation of Medicare and Medicaid nearly half a century earlier. Provisions aimed at reforming the delivery of long-term services and supports (LTSS) are already affecting the organizations, agencies, and individuals providing care for older adults and people living with disabilities. Indeed, the ACA represents an essential aspect of understanding healthcare policy for adults needing LTSS and is a critical component to ongoing efforts to restructure LTC services. Important ACA provisions affecting LTC management and the delivery of LTSS address (1) nursing home transparency and improvement; (2) workforce stability; (3) patient safety, quality, and innovation; and (4) rebalancing long-term care and home and community-based options (Miller 2012). Although specific provisions of the ACA focus on reforming the delivery of LTSS, the overall scope of the law is much broader, affecting nearly every aspect of healthcare service use, access, quality, and cost. The ACA has been criticized at times for its length and complexity—the original bill signed into law was more than 900 pages—but its expansive aims are reshaping healthcare. As reported by the US Department of Health and Human Services (HHS 2022a), the law encompasses three key healthcare reform goals: (1) to make affordable health insurance available to more people via subsidies that lower costs, (2) to expand the federal Medicaid program to cover all adults with income below 138 percent of the federal poverty limit, and (3) to support innovative medical care delivery methods designed to lower healthcare costs. Since its enactment, the ACA has also led to a historic advancement in health equity in the United States, including provisions extending insurance protection to people living with disabilities, expansion of community living options and access to information about LTSS, and reform of payments in traditional Medicare emphasizing cost-effective, value-based payments to healthcare providers (HHS 2022b). Long-term care interacts with, complements, and functions as an essential component of the broader healthcare arena, including the delivery of acute, subacute, rehabilitative, supportive, and long-term services across a broad spectrum of healthcare settings and locations. Therefore, the implications of these healthcare reforms for the field of LTC management are powerful and far-reaching. In addition, the COVID-19 pandemic has had a significant impact on the provision of LTSS, with effects that have yet to be determined on the post-acute care industry. This chapter presents an overview of the ACA and its history, reviews major ACA LTC provisions, and describes their implications for the delivery of LTSS. In addition, the impact of the changes in the Medicare Conditions of Participation on other long-term care providers is discussed as well as the subsequent implications for the management of LTC services.

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Affordable Care Act (ACA) A major healthcare reform law passed by the US Congress in 2010. The ACA includes a number of provisions that affect the financing and delivery of long-term services and supports. rebalancing long-term care The aim of shifting Medicaid dollars away from institutional care and toward communitybased options with long-term services and supports in place.

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O v e r v i ew o f L o n g -T erm S ervice s U n i t e d S tate s

and

S upp orts

in the

Long-term care services are often described as the “last stop” along a spectrum of healthcare settings. In practice, however, meeting the LTC needs of older adults and adults with disabilities is a dynamic process involving multiple players and frequent transitions across care settings and locations, with varying levels of services and support. A 2022 study of post-acute and long-term care users in 2017–2018 found that nearly 65 percent of the adult population—or 5.2 million adults—receive community-based LTSS, with nearly 82 percent of those people aged 65 or older. An additional 2.7 million adults receive services in skilled nursing, intermediate care, or other long-term care nursing facilities, with nearly 86 percent of these adults aged 65 or older (Sengupta et al. 2022). Snapshots of service use fail to convey the more integral role played by LTSS in the broader interaction between providers, patients, and the healthcare system. For example, nearly 20 percent of Medicare patients discharged from a hospital—about 2.6 million older adults—are readmitted to the hospital within 30 days, at a total cost of more than $26 billion a year, as reported by the Centers for Medicare & Medicaid Services (CMS 2022b). Vulnerable older adults—those with complex medical needs stemming from multiple chronic conditions, frailty, and disability—are at the greatest risk of experiencing what have been termed complex transition patterns. Such patterns involve multiple transitions across settings with varying levels of intensity and service needs over longer periods of time (Callahan et al. 2012; Peikes et al. 2009). These transitions require careful coordination and communication across providers to avoid unnecessary medical complications, adverse events, and errors. Until the twentyfirst century, the role of coordinating across providers received little more than academic attention, with discharge serving as the demarcation of provider responsibility. However, increased awareness of the critical nature of the transitions—and the costs associated with poorly managed transitions resulting in rehospitalization—has served to underscore the crucial role of LTSS and more clearly focus healthcare policy on improving the quality and delivery of LTSS (Arbaje et al. 2014). Implementation of the ACA provides the mandate and the means to reform care practices, while strengthening the role of LTSS in achieving these goals (Gage 2014).

O v e r v ie w

of the

A ff o rdab le C are A ct

The primary goal of the ACA is to extend the availability of private healthcare insurance to individuals via market-based approaches supported by government subsidies (HHS 2022a). Although the law has been vigorously opposed by Republicans (who called it “Obamacare” after it was signed into law by President Barack Obama, a Democrat and strong proponent), the structure of the ACA closely reflects earlier healthcare reform efforts advanced by Republicans. These include reform plans articulated by President Richard Nixon in the Copying and distribution of this PDF is prohibited without written permission. For permission, please contact Copyright Clearance Center at www.copyright.com.

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1970s, while he was preparing for an expected campaign against Senator Ted Kennedy (Altman and Shactman 2011), and the Medicare Modernization Act passed during the George W. Bush administration (Morgan 2014). Rather than provide a national health insurance plan, as envisioned in earlier reform efforts, the ACA extends coverage by offering healthcare insurance purchase options through state insurance exchanges to achieve a range of standardized options. In addition to extending health insurance coverage, the ACA aims to improve healthcare quality and control costs, in part, through changes to Medicare and Medicaid reimbursement schemes. These changes seek to reward quality of care and penalize unwarranted hospitalizations, thus emphasizing the need to coordinate services across acute and community-based settings (Harrington et al. 2012; Moon 2012). Despite nearly 100 years of healthcare reform efforts, the ACA is the first piece of legislation to comprehensively consider the role of LTSS as part of larger healthcare reform initiatives, and the first to include specific provisions to improve both access to and quality of such services. The ACA also includes provisions that redirect spending away from institutional care in favor of community-based living options; encourage innovation in coordinating and delivering care; and build capacity and coordination across agencies that previously were tasked with meeting the needs of either older adults or adults living with disabilities, but not both, despite the similarity of services and supports delivered (Caldwell and Alston 2012; HHS 2022b). Older Americans Act

H i story

of

L o n g -T e r m S e rvice s

and

S upp orts

Long-term services and supports is a broad term encompassing services and supports provided for adults of all ages who have physical, functional, or mental limitations in performing such day-to-day activities as dressing, bathing, eating, preparing meals, and taking medications (Kaye and Harrington 2015). LTSS traditionally were developed and delivered in terms of age-specific categories, creating fragmentation and duplication of services (Putnam 2014). Although the ACA includes a number of landmark provisions concerning LTSS, the history of improving services and supports for older adults and adults living with disabilities reflects 50 years of effort. Exhibit 2.1 shows a timeline of major events since the 1960s that have affected LTSS delivery through the passage of the ACA in 2010.

(OAA) Legislation passed by the US Congress in 1965 establishing the Administration on Aging and a network of state and local units to address the social services needs of older adults. Administration on Aging (AoA)

The Older Americans Act

of

1965

The Older Americans Act (OAA) was signed into law by President Lyndon B. Johnson in 1965 with the aim of establishing a federally funded, national network of aging services for older adults. Part of the Johnson administration’s wave of Great Society legislation, the OAA represented a commitment by the federal government to provide a variety of services and supports through the establishment of the Administration on Aging (AoA) within the Department of Health and Human Services (HHS), as well as through a network of State

A division of the US Department of Health and Human Services responsible for advancing the concerns and interests of older people and their caregivers.

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1973: Rehabilitation Act

1985

1991: Idea Act 1990: Americans with Disabilities Act

1987: Nursing Home Reform Act

1987: OBRA 1987 & LTC Ombudsman Program

1981: Medicaid HCBS Waivers Program

1975: DD & Bill of Rights Act

1975

1973: Area Agencies on Aging established

1965: State Units on Aging

1965: Medicare & Medicaid

1965

1965: Older Americans Act (OAA)

1972: Supplemental Security Income

1972: OAA expanded, providing ONB P.L. 94 –103. congregate meal sites

1999: Olmstead decision

2017: CHRONIC Care Act

2015: MACRA & PACE Acts

2013: Jimmo decision

2015

2020: Coronavirus Commission on NH Quality & Safety Report Released

2021: American Rescue Plan Act

2020

2018: RAISE Family Caregiver

2016: Medicare CoP 2014: IMPACT & PAMA

2012: ACL established

2011: Balancing Incentive Program begins under the ACA

2009: Nursing Home Transparency and Improvement Act 2005: Money Follows the Person demonstration begins

2005

2006: Combating Autism Act

2010: Affordable Care Act

2003: Aging & Disability Resource Centers

1999: Ticket to Work and Work Incentives Improvement Act

1995

1996: HIPAA

2010: Money Follows the Person expanded

EXHIBIT 2.1 Major Policy Events Affecting the Delivery of LTSS to Older Adults and Adults with Disabilities

2003: Medicare Prescription Drug Act

34 D i m e n s i o n s o f L o n g - Te r m C a r e M a n a g e m e n t

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Units on Aging and local Area Agencies on Aging. Although perhaps historically overtasked and underfunded, the OAA sought to improve access to LTSS, provide caregiver support, establish congregate and home-delivered meal programs, support job training programs for older workers, and build an educated elder workforce. Significantly, many services provided via the OAA are not tied to income levels and include all adults aged 60 or older, as noted by the Administration for Community Living (ACL 2021). The OAA has been legislatively reauthorized multiple times; the Supporting Older Americans Act of 2020 reauthorized OAA programs through fiscal year 2024 (ACL 2021). A detailed overview of specific OAA provisions and AoA funding issues is provided in chapter 5.

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Rehabilitation Act Legislation expanding vocational training and guaranteeing certain rights to people with disabilities. Passed in 1973, it was the first US federal civil

T h e E v ol u t i o n

of

D i s a b i l i t i e s L e g i sl at i o n

The civil rights era of the 1960s ushered in a series of laws designed to protect and ensure equitable treatment of vulnerable and marginalized populations. In 1973, the Rehabilitation Act, signed into law by President Nixon, expanded vocational training programs for individuals with disabilities and prohibited unfair hiring practices by agencies receiving federal monies. However, it stopped short of identifying disabilities as a potential civil rights concern. Nonetheless, the Rehabilitation Act formed the cornerstone for a series of laws to follow, including the historic Americans with Disabilities Act (ADA) in 1990, which identified discrimination against individuals with disabilities as similar to discrimination based on race, gender, religion, and age. Furthermore, the ADA included provisions requiring reasonable accommodations by employers for employees with disabilities, as well as broader measures for increasing accessibility requirements for public accommodations. Soon after the passage of the ADA, the Individuals with Disabilities Education (IDEA) Act of 1991 aimed to ensure that children with disabilities receive an appropriate public education, with plans to provide services and supports for such children within the community (ADA National Network 2022).

rights protection for individuals with disabilities.

Americans with Disabilities Act (ADA) Legislation passed in 1990 extending the reach of the Rehabilitation Act by prohibiting discrimination against people with disabilities in the areas of employment, transportation, public accommodations, communications, and government activities.

O b r a 1981

and

Medicaid

hcbs

Waivers

As part of the Omnibus Budget Reconciliation Act (OBRA) of 1981, Medicaid began offering waiver programs under Section 1915 of the Social Security Act, allowing states to create new home and community-based services (HCBS) programs. The initiative allowed states to relax original Medicaid participation requirements, expand access to services, and shift funds from institutional to community-based care options. Although Medicaid waiver HCBS programs enable states to provide a greater array of services to older participants and people living with disabilities outside institutions, participating states must demonstrate that the Medicaid cost per participant for such services is no greater than the cost of institutional care. In developing HCBS programs, states can choose to target specific groups and impose certain eligibility requirements, including medical and financial criteria.

Omnibus Budget Reconciliation Act (OBRA) of 1981 A US law that included Medicaid waiver programs for home and community-based services.

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States can also limit eligibility and program operation to certain geographic areas to target vulnerable populations (Harrington et al. 2012). O b r a 1987 Omnibus Budget Reconciliation Act (OBRA) of 1987 A US law, sometimes called the Nursing Home Reform Act, identifying services required of nursing homes participating in Medicare and Medicaid, as well as standards for delivering these services. It also established a patient bill of rights and an outcome-focused, resident-oriented survey process. Olmstead v. L.C. A landmark case in which the US Supreme Court ruled in 1999 that persons with disabilities related to

and

Nursing Home Reform

Following the passage of Medicare and Medicaid in 1965, the care provided in nursing homes began to move beyond room and board to include posthospital rehabilitation services. As years passed, concern over persistent poor quality of care in nursing homes, combined with the growing share of federal and state dollars flowing into nursing homes, led to congressional calls for a nonpartisan investigation into nursing home standards, oversight, and enforcement. In response, the Institute of Medicine in 1986 released its seminal report on nursing home quality, titled Improving the Quality of Care in Nursing Homes. In addition to detailing a system fraught with shortcomings in oversight and accountability, the report outlined several actionable items for improving care. These measures were quickly enacted by Congress as part of the Omnibus Budget Reconciliation Act (OBRA) of 1987 (Wiener, Freiman, and Brown 2007). Often referred to as the Nursing Home Reform Act, OBRA 1987 identified services required of nursing homes participating in Medicare and Medicaid, as well as standards for delivering these services. Notably, the law requires care to be consistent with ensuring that all residents receive services that enable them to reach and maintain their highest physical, mental, and psychosocial well-being. To this end, the law requires an individualized resident assessment process, with regular updates, that correspond with a documented care plan outlining service needs. The act also identifies a set of resident rights, including the right to organize and join resident or family councils and the right to be free of unnecessary physical or chemical restraints (Coleman 1991). In addition, the Nursing Home Reform Act includes several provisions focused on reforming the nursing home survey process, shifting surveyor focus from what were primarily structural concerns prior to 1987 to concerns more strongly linked to resident outcomes (Wiener, Freiman, and Brown 2007).

mental or emotional health needs should not be unnecessarily institutionalized and that protection under the Americans with Disabilities Act requires services to be delivered in the least restrictive setting.

The Olmstead Decision

of

1999

Despite improvements achieved by previous laws, adults living with disabilities stemming from mental health or emotional needs remained poorly protected from overreaching state institutionalization practices. However, in 1999, the US Supreme Court ruled in the landmark case of Olmstead v. L.C. that persons with disabilities related to mental or emotional health needs should not be unnecessarily institutionalized and that protection existed under the ADA requiring services to be delivered in the least restrictive setting. Building on this case, and following favorable results from the Medicaid waiver program, the 2005 Deficit Reduction Act allowed states to make HCBS part of their Medicaid programs directly, rather than having to receive waivers (Milne 2012; Hudson 2014).

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Ticket

to

Work

and

Work Incentives Improvement Act

of

37

1999

A key problem facing adults living with disabilities has been the threat that people could lose eligibility for LTSS if they are able to work. To address this concern and to support independence and self-directed care, the Social Security Administration’s Ticket to Work program was created in 1999. Established by the Ticket to Work and Work Incentives Improvement Act, the program is available on a voluntary and free basis to adults aged 18–64 who have physical or visual disabilities and are already receiving Social Security Disability Insurance or Supplemental Security Income (AARP 2021b). The program allows people to participate in vocational and educational training and to explore work options through employment networks without automatically losing their benefits, including healthcare. The program helps participants maximize earnings and aims to foster financial independence (Social Security Administration 2022). By 2021, 318,000 individuals with significant disabilities were participating in Ticket to Work programs and receiving LTSS while employed (Government Accountability Office 2021).

T h e J i m m o S e ttl e m e n t

Jimmo v. Sebelius, No. 5:11-CV17 (D. Vt., 1/24/2013), was a nationwide class-action lawsuit brought against CMS on behalf of individuals with chronic conditions who had been denied Medicare coverage on the basis that they did not meet an “improvement standard” of care—that is, they were not improving or did not demonstrate potential for improvement. (Recall from chapter 1 that a chronic health condition is a health condition lasting for a year or longer that requires ongoing medical attention or limits an individual’s activities of daily living.) In 2013, a US District Court approved the settlement agreement, which required CMS to confirm that Medicare coverage is determined by a beneficiary’s need for skilled care, not on a beneficiary’s potential for improvement. The Jimmo Settlement applies to all Medicare beneficiaries throughout the country, regardless of whether an individual is in traditional Medicare or has a Medicare Advantage plan (Center for Medicare Advocacy 2020).

O b sta c l e s

to

Jimmo v. Sebelius A nationwide classaction lawsuit resulting in a settlement that requires CMS to confirm that Medicare coverage is determined by a beneficiary’s need for skilled care, not on their potential for improvement.

LTSS A c c e ss

Despite considerable expansion in community-based LTSS, several challenges remain in achieving effective, efficient, and affordable services that are coordinated across providers and over time; are person-centered; and meet benchmarks for best practices and quality of care. A report to the US Senate Special Committee on Aging (2013) outlined several obstacles and potential solutions for strengthening the LTSS system, including the development of a national insurance program. Unlike in other areas of healthcare, insurance and risk sharing for LTSS are limited. Many older adults and people living with disabilities rely

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on family caregivers and struggle to pay for additional services. Some services are available through programs such as Medicare and Medicaid, but these services are limited in scope and rely on public financing. Although the expansion of Medicaid HCBS, the development of Managed Long-Term Services and Supports (MLTSS) Medicaid programs, and other policy initiatives have alleviated some problems of access (Medicaid.gov 2022c), large gaps in funding and payment mechanisms continue to undermine LTSS delivery.

D e f i ni n g H i g h -P e rf ormance D elivery

of

L tss

Measuring the quality and performance of LTSS is difficult because the services are provided across a variety of settings and locations. Nonetheless, benchmarks to gauge access, quality, and cost are necessary to ensure that efficient, effective services and supports are in place that improve quality of life and prevent unnecessary exacerbations of existing health needs (Kwak and Polivka 2014). At the broadest level, researchers and policy analysts have identified five key areas of concern: (1) access and affordability of services, (2) consumerdirected choice, (3) outcomes related to quality of care and life, (4) availability of caregiver support, and (5) well-coordinated and effective transition programs across providers and care settings (Reinhard et al. 2014; see also the accompanying “Did You Know?” sidebar on adverse medical events). Currently, data for measuring outcomes are limited, and professional consensus on what and how to measure has not been achieved. Nonetheless, efforts to improve quality reporting are under way. For example, in 2015, 2019, and 2022, CMS recalibrated its Five-Star Quality Rating System, which reports nursing home performance on standardized quality measures (CMS 2022c). Efforts to develop national measures and standards DID YOU KNOW? will continue in the coming years, influenced by Adverse Medical Events the relative infancy of healthcare reform, the ongoing expansion of LTSS, consumer preference for community-based care, and ACA regulations to The Institute of Medicine defined an adverse medical event rebalance services away from institutional settings (AME) as “an injury caused by medical management rather than (Lind 2013). the underlying condition of the patient.” It suggested that as many as 250,000 individuals could die from AMEs each year, and that it AMEs constitute the third leading cause of death in the United States (Makary and Daniel 2016). Research has traced Medicare beneficiaries longitudinally and across care settings, finding that perhaps as many as half of all AMEs occur outside the hospital setting, suggesting the need to better coordinate care across transitions and providers (Carter et  al. 2014).

T he E ffec t of the A ca D elivery of L tss

on the

Older adults and people living with disabilities consistently report a strong preference for community-based versus institutional-based locations of care (Keenan 2014). While the years prior to the ACA’s passage had seen progress toward the rebalancing of services, provisions under the ACA

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strengthened the shift by providing federal incentives for states to develop noninstitutional solutions for Medicaid beneficiaries requiring LTSS. Although the approach still represents a patchwork of services and policy tinkering, the changes reflect broader efforts to restructure LTSS while integrating services more effectively with intensive healthcare service needs, such as posthospital discharge and rehabilitative services. Many of the ACA’s LTSS provisions, such as the Elder Justice Act, reflect past efforts that failed to pass as stand-alone bills in earlier congressional sessions (Hawes et al. 2012). Meanwhile, other provisions, such as the ADA, reflect iterative policy improvements built on previous successes used to expand and rebalance LTSS services (Woodcock 2011). While the ACA does not completely remove obstacles to fully streamline LTSS, it aims to strengthen home and community-based services, workforce training and stability, chronic and transitional care coordination, and nursing home quality of care, with an overall focus on rebalancing services in favor of community-based care (Miller 2012). The sections that follow outline key changes in the delivery of LTSS under the ACA. The section further explores how these changes to LTSS are reshaping the scope and range of service delivery for older adults and adults with disabilities living in the community. T h e S h i f t A way

from

I n st i t u t i o n a l

to

C o m m u n i t y -B a s e d C a r e

Because payment for LTSS comes from a variety of private, federal, and state funding sources—including out-of-pocket payment, Medicare, and Medicaid—LTSS reform efforts are spread across many mechanisms of delivery. At the heart of reform are a set of provisions aiming to shift services from institutional to community-based care options by providing incentives to states to redirect Medicaid funds in that manner. Because Medicaid has traditionally been the largest payer of LTSS, reforming how and where Medicaid dollars are spent is pivotal to reshaping LTSS delivery. Some evidence suggests that ongoing efforts at rebalancing have led to an increase in HCBS options. For example, the Congressional Research Service (2022) reported that of the total LTSS spending in 2020 of $475.1 billion, Medicaid accounted for $200.1 billion, or 42.1 percent of a total $343.5 billion in public spending on LTSS. Watts, Musumeci, and Ammula (2022) also reported that in 2020, Medicaid spent $116 billion for home and community-based LTSS—more than half of all Medicaid dollars spent. These expenditures may also change in the future as a result of the impact of COVID-19, which increased Medicaid enrollment and spending to respond to the public health emergency (Williams and Hinton 2022). Managed Long-Term Services and Supports (MLTSS), a capitated approach to the delivery of long-term care services and supports through Medicaid managed care plans, has grown in popularity in many states, with 22 states creating an integrated care option for their residents who are eligible for Medicare and Medicaid (Archibald, Soper, and Dobson 2020). Despite the progress made, about 90 percent of the approximately 12 million individuals in the United States who are eligible for both Medicare and Medicaid are still

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receiving fragmented, uncoordinated care, and many live in states that have not taken steps toward integration (Archibald, Soper, and Dobson 2020). The Administration for Community Living

Administration for Community Living (ACL) An umbrella agency of the US government that provides services

In addition to implementing incentives for states to shift Medicaid funds from institutional to community-based care, the ACA authorized the reorganization of several federal agencies within HHS, including the Administration on Aging, the Office on Disability, and the Administration on Developmental Disabilities. Previously, these three agencies were charged with different missions and goals in a parallel structure that resulted in age-based and need-based differences in service allocation, program redundancy, and inefficient use of administrative resources. Under the ACA, a newly created HHS agency, the Administration for Community Living, is tasked with advising the director of HHS and developing effective LTSS policies and programs to meet the needs of older and disabled adult populations and to provide support for caregivers. The agency’s overarching goals are to streamline coordination and delivery of services, improve information and access to services, and increase quality while controlling costs (ACL 2013).

and supports for older adults and individuals with disabilities.

single access point (SAP) An approach allowing client access to referral and information about

Aging and Disability Resource Centers

Aging and Disability Resource Centers (ADRCs) were first initiated in 2003 in a collaborative effort between the Administration on Aging and CMS through Medicaid demonstration waivers. Initial funding was made to 13 states with the aim of developing trusted information and referral sites that achieved single access points, improved client knowledge about LTSS options, reduced confusion about options and eligibility, improved coordination across service providers, and eliminated administrative overhead. The program expanded in 2004, and in 2006 continued funding was made available through OAA reauthorization. The ACA provided funding to develop additional ADRCs, which are now available in all 50 states and some US territories (ACL 2022a).

long-term services and supports availability and eligibility, regardless of the client’s entry point or starting place in the system. Also called single entry point (SEP).

Single Access Points

At times, individuals requiring long-term care face exhausting efforts to identify, navigate, and understand the complicated patchwork of LTSS and their various eligibility requirements. Since 2010, various state and federal efforts have sought to streamline access by creating a single access point (SAP), or single-entry point (SEP), for individuals needing LTSS. Although program design, funding sources, and agency involvement vary across states, the overarching goal is to improve client access to referral and information about LTSS program availability and eligibility regardless of the individual’s entry point (see also Critical Concept sidebar “Single Access Points for Locating LTSS”). Sometimes called a “no

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wrong door” policy or “one-stop” policy, a SAP allows clients to tap into LTSS through a single telephone call, website, or office visit. For most states, the telephone provides the entry point for clients, allowing individuals to receive information and referrals that are either integrated into one agency, such as an Aging and Disability Resource Center, or streamlined across agencies, such as an Area Agency on Aging. Either way, whether it functions through integration of information and referral, or through streamlined coordination across agencies, the SAP should provide clients with available options and eliminate duplicative intake forms, qualifying applications, and individual footwork in locating services (ACL 2022b). Balancing Incentive Programs (BIPs)

Under the ACA, Balancing Incentive Programs (BIPs) use financial incentives to target states that historically have relied heavily on nursing home or institutional care to meet the needs of older adults and people living with disabilities. Participating states had to agree to several LTSS restructuring requirements, including the use of a SAP for LTSS information and referral, conflict-free case management services, and standardization of a single assessment instrument to be used across participating agencies. Qualifying state BIP programs received increased federal Medicaid matching funds, which had to be used to create new or additional community-based LTSS. During the BIP demonstration, states had to make progress toward rebalancing Medicaid dollars away from institutional care, achieving 50 percent allocation of Medicaid funds toward community-based LTSS options (Medicaid. gov 2022a). After the BIP program ended in 2015, 13 states still participated, using their own funding and funds left over from the Medicaid grants (Medicaid.gov 2022a). CRITICAL CONCEPT Single Access Points for Locating LTSS

Family members provide the bulk of caregiving for older adults requiring assistance with ADLs and IADLs. Although willing to step in, few are prepared for the challenges associated with locating services, meeting financial demands, and managing their loved ones’ needs for extended periods. The challenges become even more daunting when caregivers are left scrambling after an unexpected health crisis to locate affordable and eligible LTSS, sometimes with only hours to prepare before a hospital discharge. Single access points provide caregivers with information and referral about LTSS program availability and eligibility. Efforts to standardize assessment requirements and other intake information streamline the referral process, simplifying what is, for many people, an overwhelming experience.

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Money Follows the Person (MFP) Money Follows the Person (MFP) A grant program encouraging a beneficiary discharged from an institutional care facility to remain in the community and receive services at home.

Like other rebalancing programs, the Money Follows the Person (MFP) program began as a Medicaid demonstration program allowing states to develop innovative models for delivering community-based LTSS to older adults and people living with disabilities who were receiving Medicaid-funded institutional LTC. For each institutionalized Medicaid beneficiary transitioning back to the community with sufficient LTSS in place, additional federal Medicaid matching dollars were allocated for a period of 12 months. MFP began in 2008. Under the ACA, MFP funding was expanded, extending state participation through 2016 and increasing the number of participating states to about 45 as of 2013. In addition to providing continued and expanded funding, the ACA reduced (to 90 days) the length of time a Medicaid beneficiary had to be institutionalized prior to qualifying for program participation, with the aim of increasing successful transitions back to the community as soon as possible. By 2013, more than 35,400 such transitions had taken place across 42 states (O’Malley Watts, Reaves, and Musumeci 2014). State participation in MFP continued beyond 2016, and by the end of 2020, states had transitioned a cumulative total of more than 107,000 people to community-based LTSS (Medicaid.gov 2022d). Analyses suggest that approximately 25 percent of older adult MFP participants would not have been transitioned if MFP had not been implemented. Assessing cost savings is complicated. However, on average, expenditures per beneficiary per month declined by 23 percent among older adults transitioning from nursing homes through 2013. In many states, formal transition and rebalancing programs did not exist before the MFP demonstration began, so it has served a valuable role in developing interagency collaborations among housing and health at both the federal and state levels. (Hargan 2017). In 2020, CMS reauthorized up to $165 million for 33 states that are currently operating MFPfunded programs. This funding is expected to strengthen the focus and attention on LTSS rebalancing among states participating in the MFP demonstration and to support MFP grantees in making meaningful progress with LTSS rebalancing (Medicaid.gov 2022d).

health homes Person-centered care coordinated across providers of all levels, including hospitals, physicians, and longterm services and supports, to meet both the physical and behavioral health care needs of adults with multiple chronic conditions.

Health Homes

Coordinating care across providers for older and disabled adults with multiple chronic conditions relying on Medicaid has long been a challenge to achieving timely access to services. Lacking access to case management services and a primary healthcare provider, Medicaid beneficiaries with multiple chronic conditions (which may include mental health issues, substance abuse, asthma, diabetes, heart disease, or being overweight) are at an increased risk of poor coordination of services, care fragmentation, and poor outcomes, including potentially avoidable hospitalizations stemming in large part from inadequate communication and case management (Medicaid.gov 2022b). The ACA provides funds to create health homes with the aim of improving both access to and coordination of services across care settings. Specific focus includes better communication between acute

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care, physician care, and LTSS providers to ensure improved coordination of care across settings and over time. Although program implementation varies across states, in general, Medicaid beneficiaries with two or more chronic conditions who are at immediate risk of developing a third are eligible. Enhanced Medicaid funds are available to participating states, which have the option of targeting programs to specific chronic conditions. Program participants must receive case management, transitional and behavioral health services, and information and referral for LTSS. Because the program uses a “whole-person” model of care delivery, services must be available to support caregivers and family members as well as individual participants. To meet ACA requirements, state programs must use health information technology coordinated across providers, and they must develop care teams or partnerships to ensure coordination and communication of whole-person case management and service delivery (Medicaid.gov 2022b). ACA I n i t i at i v e s

to

I m p r o v e LTSS

for

V u l n e r a b l e P o p u l at i o n s

Among the many LTSS initiatives under the ACA, some specifically seek to improve LTSS care for vulnerable or at-risk populations—that is, groups with multiple chronic conditions and unusually high healthcare costs and risks. Such initiatives include: (1) demonstrations aimed at achieving evidence-based solutions for integrating care while better aligning program financing for beneficiaries eligible for both Medicare and Medicaid, and (2) changes to improve Medicare Part D and to eliminate “donut hole” out-of-pocket expenses. Programs for Dually Eligible (Medicare and Medicaid) Beneficiaries

In 2013, the dually eligible population—the number of people simultaneously eligible for both Medicare and Medicaid—was 10.7 million, representing nearly 20 percent of the total Medicare population that year. Program costs for dually eligible individuals were high, representing 34 percent of total Medicare dollars and 35 percent of total Medicaid dollars in 2015 (CMS 2015a). By 2018, the number was 12.2 million, and 49 percent of that population receive long-term services and supports (CMS 2020b). While the dually eligible percent of the Medicare population and the Medicare costs for them remained the same, their percentage of total Medicaid dollars dropped slightly to 30 percent (CMS 2020b) Hence, this vulnerable population continues to represent a major focus of the ACA’s efforts to improve quality of care while controlling costs. A key feature of the ACA’s plan to improve care for the dually eligible population was the creation of the Medicare–Medicaid Coordination Office (MMCO) within CMS. The office’s aim is to create a more friendly and seamless Medicare–Medicaid system for the dually eligible and improve coordination and beneficiaries’ interactions with the programs. To this end, the MMCO’s Financial Alignment Initiative seeks to integrate multiple areas

dually eligible population People who are simultaneously eligible for both Medicare and Medicaid.

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of service delivery and eligibility requirements that have been obstacles to seamless care in the past. In addition to redesigning service delivery, the center aims to provide assistance for beneficiaries as they navigate what historically has been confusing terrain for individuals and their caregivers (Banach and Bella 2013). Eleven demonstration projects are being conducted as part of this effort (California and Virginia ended their demonstrations in 2017). With the support of CMS, 11 states (California, Illinois, Massachusetts, Michigan, Minnesota, New York, Ohio, Rhode Island, South Carolina, Texas, and Washington) are testing capitated managed care models to provide and coordinate Medicare and Medicaid acute, physical health, behavioral health, pharmacy, and long-term services and supports (CMS 2022d). All these demonstrations include at least some LTSS for the dually eligible and people with disabilities (not including developmental disabilities), while the New York demonstration is exclusively focused on them. Demonstrations vary widely in their requirements for enrollment and in the level of financial support for HCBS versus institutional care. All eleven demonstrations include some nursing facility services in their packages, with LTSS coordination and independent-living support requirements reflecting each state’s history of HCBS programming. Preliminary findings indicate cost savings from selected demonstrations as well as improved care through increased use of HCBS over institutional care (CMS 2022d). Medicare Part D and the Donut Hole

The Medicare Modernization Act of 2003 established Medicare Part D, the voluntary outpatient drug benefit for Medicare beneficiaries. Although the program, which went into effect in 2006, helped reduce beneficiaries’ out-of-pocket costs for prescription drugs, many KEY POINT people were left vulnerable by what became known Efforts to Improve Care for Dually Eligible as the donut hole provision. Beneficiaries Similar to the ACA design for expanding healthcare coverage, the Medicare drug benefit High healthcare costs among dually eligible beneficiaries with provides government subsidies for standardized multiple chronic conditions have led to several initiatives under prescription drug plans. However, because of a the ACA to improve access to and quality of care while control“donut hole” built into the program, some benling spending. Examples of such initiatives include Community eficiaries with prescription drug costs above a First Choice programs, health homes, and managed Medicaid certain threshold would be responsible for 100 LTSS demonstrations such as BIPs and MFP. percent of drug costs, plus continued premium payments, until reaching the level of catastrophic out-out-pocket spending, at which point prescription coverage would again be available. Because spending amounts reset annually, the gap in coverage posed a significant obstacle to timely, uninterrupted access to needed medicines for many beneficiaries.

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Under the ACA, the donut hole was to gradually close by 2020, but the federal government actually closed it as of January 2019 (Bunis 2018). Initially, Medicare Part D recipients who entered the donut hole in 2010 were given a rebate toward their expenses. Starting in 2012, drug discounts began to help offset consumer costs, until the amount of out-of-pocket costs gradually declined. Closing the donut hole was intended to not only provide financial relief for Medicare beneficiaries but to improve prescription drug compliance among elders with chronic care needs. Drug cost has been identified as an important risk factor for poor drug adherence, which in turn affects overall health outcomes and costs (Roebuck et al. 2011). Improving Care Transitions Under

the

Aca

A mismatch has long existed in the United States between the chronic care needs of an aging population and a healthcare system geared mainly toward acute care services. Insurance structures at the turn of the twenty-first century were designed primarily to offset expensive, short-term healthcare services, such as hospital care (Kane 2000). However, since the nineteenth century, advancements in public health and sanitation, combined with unprecedented population aging, have shifted the focus of healthcare service needs from short-term conditions (e.g., infectious diseases) to long-term chronic conditions (e.g., heart disease, cancer, HIV). The Centers for Disease Control and Prevention (CDC 2022) estimates that six out of ten adults in the US adult population have at least one chronic condition, and four in ten adults have two or more chronic conditions. As the number of chronic conditions increases, care becomes more costly and complex, involving a mix of care settings and providers over time. As care complexity increases, the number of care transitions increases as well (Arbaje et al. 2014). Exhibits 2.2 and 2.3 demonstrate the prevalence of chronic conditions and their impact on inpatient admissions. A care transition is a transfer from one care setting to another, such as from a hospital to a skilled nursing facility to home health care. With each transition, faulty coordination and communication barriers can threaten patient safety and well-being (Golden and Shier 2013). Indeed, estimates suggest that prior to the implementation of the ACA, nearly 20 percent of older adults who were discharged from a hospital were rehospitalized within 30 days (CMS 2013). It is currently estimated that roughly two million older adults are readmitted to the hospital at a cost of $26 billion to Medicare, with $17 billion of potentially avoidable readmissions (CMS 2018). Because of the cost, disruption, and potential risk such hospitalizations pose, especially to older adults and adults with disabilities, the ACA includes several initiatives to strengthen care transitions across settings and providers. Comprehensive healthcare reform requires attention to LTSS, and it demands careful communication and coordination of care delivered, with flexibility over extended periods.

care transition Transfer or movement from one care setting to another, such as from an inpatient hospital stay to a skilled nursing facility to home health care. Complex care transitions refer to care episodes requiring multiple transfers between various providers and levels of care.

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EXHIBIT 2.2 Common Chronic Conditions Among Medicare Beneficiaries, 2018

Hypertension

57% 48%

Hyperlipidemia 33%

Arthritis 27%

Diabetes

27%

Ischemic Heart Disease

24%

Chronic Kidney Disease 18%

Depression 14%

Heart Failure 11%

COPD

11%

Alzheimers Disease/Dementia 8%

Atrial Fibrillation

8%

Cancer 7%

Osteoporosis

5%

Asthma Stroke

4%

Drug Abuse/Substance Abuse

3% 3%

Schizophrenia/Other Psychotic Disorders Alcohol Abuse Hepatitis (Chronic Viral B & C)

2% 0.8%

HIV/ AIDS

0.4%

Autism Spectrum Disorders

0.3%

Source: CMS (2021b), fig. 1.

Rehospitalization Reduction Program

Healthcare reform efforts have encouraged several approaches to reducing potentially avoidable hospitalizations among nursing home residents. They include building networks and collaborations between nursing homes and hospitals to improve coordination of care, implementing quality assurance programs focused on risk reduction, and using reimbursement incentives to reward successful reductions in hospitalizations while penalizing systems that fail to reduce unnecessary hospitalizations. Reduced hospitalization rates are targeted through evidence-based programs that draw on teams of providers both within and outside the nursing home—for example, physicians, home health care teams for transitioning home, case management, and others (CMS 2021e). The ACA also requires CMS to explore pay-for-performance and bundled care options as incentives for better care coordination between and across providers. Pay-forperformance models reward providers who meet benchmarks while reimbursing at a lower rate for providers failing to meet certain quality levels. Bundled payments, meanwhile, reimburse based on episodes of care rather than by fee for service. Because care for older adults and adults living with disabilities often involves multiple settings and providers for a

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0 to 1 condition

2 to 3 conditions

4 to 5 conditions

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EXHIBIT 2.3 Relationship Between Chronic Conditions and Inpatient Admissions, 2018

6+ conditions

18%

22% 82%

29%

31%

13% 4%

Percent of Beneficiaries

1%

Percent of 30-Day Medicare Hospital Readmissions

Source: CMS (2021b), fig. 14.

single episode (e.g., hospitalization for stroke, skilled nursing for rehabilitation, and home health care for continued physical therapy), bundled payments discourage providers from viewing discharge as the end of their involvement; rather, payment is spread across entities depending on the quality of the outcome achieved (CMS 2022a). IMPACT Act and PAMA Act of 2014

In 2014, two key pieces of legislation were passed that supported the ACA’s requirement to explore ways to improve care coordination between and across providers. The Protecting Access to Medicare Act (PAMA) required CMS to specify an all-cause, all-condition hospital readmission measure for nursing homes, and an all-condition, risk-adjusted rate for potentially preventable hospital readmission (CMS 2022g). The Improving Medicare Post-Acute Care Transformation (IMPACT) Act required post-acute care providers to report standardized patient and resident assessment data, data on quality measures, and data on resource use and other measures (CMS 2021d). It also required data to be interoperable, allowing for its exchange among post-acute care and other providers. Both acts work toward improving the measurement of hospital readmissions and standardizing measures for resident assessment, resource use, and quality data. PAMA and IMPACT are discussed in greater detail in chapter 3.

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CHRONIC Care Act of 2018

After multiple resubmissions and revisions, the Creating High-quality Results and Outcomes Necessary to Improve Chronic (CHRONIC) Care Act was passed in February 2018. It advanced the goals of integrated person-centered care for Medicare beneficiaries and those dually eligible for Medicare and Medicaid. The CHRONIC Care Act addresses three aspects of care as follows (Tumlinson, Burke, and Alkema 2018): 1. It encourages the use of flexible new tools and strategies to better manage care for individuals with complex needs by covering nonmedical benefits for highneed members, telehealth benefits, and incentives for beneficiaries to choose high-value care; 2. It protects and builds on key programs serving individuals with complex care needs, including Special Needs Plans (SNPs) whereby managed care organizations can service high-need Medicare beneficiaries, as well as high-need Medicare or Medicaid beneficiaries in their homes; and 3. It signals that care coordination and integration are essential purposes of SNPs, requiring unified approaches for dually eligible adults and a single pathway for grievances and appeals. accountable care

Accountable Care Organizations

organizations (ACOs)

To further promote cost containment and improved care coordination, the ACA authorized the Medicare Shared Savings Program, an initiative allowing for the creation of accountable care organizations (ACOs). ACOs bring together a network of healthcare providers, including hospitals and physicians, as a single organization. Other providers, such as home health agencies, skilled nursing facilities, and pharmacies, may be included. To participate, ACOs must enroll at least 5,000 Medicare beneficiaries for a minimum of three years and meet certain regulatory and quality-of-care benchmarks. Although ACOs can still use fee-for-service payment models, final compensation for services rendered is affected by the degree of cost sharing in the ACO model, as well as overall quality of care and total Medicare expenses. ACOs successful at delivering care at a lower cost while meeting quality benchmarks receive additional Medicare reimbursements; those failing to meet benchmarks receive reduced reimbursements. Accountable Care Organizations (ACOs) participating in the Medicare Shared Savings Program (Shared Savings Program) in 2020 earned performance payments (shared savings) totaling nearly $2.3 billion while saving Medicare approximately $1.9 billion (CMS 2021a).

Networks of healthcare providers, including hospitals, physicians, and others, brought together as a single organization jointly held accountable for patient outcomes, quality of care, risk sharing, and costs.

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Medicare Access and CHIP Reauthorization Act of 2015 (MACRA)

49

KEY POINT Rethinking Payment Systems

The Medicare Access and CHIP Reauthorization Act of 2015 (MACRA) created the Quality Payment Program, which changed the way MediMedicare was initially designed as a fee-for-service (FFS) procare rewarded clinicians for value over volume, gram reimbursing providers for individual services provided. streamlined multiple quality payment programs However, because FFS systems encouraged increased use of under the Merit based Incentive Payment Sysservices regardless of outcomes achieved, healthcare reform tem (MIPS), and gave bonus payments for parefforts are exploring alternative approaches to payment. Inteticipation in eligible alternative payment models grated care systems allow Medicare beneficiaries, as well as (APMs) (CMS 2022e). As the Quality Payment dually eligible adults, to receive person-centered, coordinated Program unfolded, there has been increasing intercare and receive assistance with their nonmedical needs. est and participation in both payment models. By 2018, the number of Qualifying APM participants had risen to 183,306 clinicians, and 98 percent of eligible clinicians participated in the MIPS program (LaPointe 2019). Meanwhile, CMS continues efforts to strengthen the program by seeking input from clinicians and other stakeholders (LaPointe 2019). The Aca

and

Nursing Homes

The ACA includes several provisions to reform nursing home care, making it the most comprehensive legislative initiative affecting nursing homes since the 1987 National Nursing Home Reform Act. The law uses a multipronged approach to address transparency and accountability, quality of care, workforce training and retention, and elder abuse prevention (Wells and Harrington 2013). Transparency and Accountability

Increasing transparency and accountability involves facility-specific changes in data collection and reporting, and federal changes in CMS regulation and monitoring. At the nursing home level, facilities must provide disaggregated nursing hours based on payroll and case-mix data, as well as detailed financial information regarding ownership and controlling interests, management contracts, and property holdings and subleases. Any facility that voluntarily elects to close its operations must first obtain a 60-day preapproved state plan, including relocation details for residents (Hawes et al. 2012). On the federal side, CMS must continue to revise public reports of nursing home quality on the CMS Nursing Home Compare website, adding more quality indicators, results from health inspections, hospitalization rates, and staffing levels (Hawes et al. 2012).

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Quality of Care

Efforts to improve quality of care have evolved over several decades. The Medicare and Medicaid Conditions of Participation for Long Term Care (LTC) facilities were published in the Federal Register on February 2, 1989. These Conditions of Participation were revised in 2016 to reflect the substantial advances made in the theory and practice of long-term care service delivery and safety (CMS 2022f ). In addition to improving federal regulation of long-term care providers, CMS made changes in the reporting of quality indicators for all healthcare organizations that participated in the federal Medicare and Medicaid programs, including long-term care providers, with the goal of improving data integrity. The Medicare Care Compare website, launched in 2020, is a comprehensive site that contains cost, quality of care, volume of services, and other data for all Medicare and Medicaid healthcare providers (CMS 2020a). Other initiatives included broadening the scope of Quality Improvement Organizations (discussed in chapter 14) in partnering with nursing homes to address quality-of-care concerns, including efforts to reduce hospitalizations, avoid adverse medical events, prevent decubitus ulcers, and reduce reliance on chemical and physical restraints (CMS 2012). In response to provider complaints, there has been considerable effort to revise some of these CMS rules and ease the “burden” on providers. Since 2017, CMS has taken several actions to deregulate the industry, including placing a moratorium on full enforcement of standards of care, proposing to roll back emergency preparedness requirements, and reversing the ban on predispute arbitration agreements. (Center for Medicare Advocacy 2019a). Elder Abuse Prevention

The ACA requires all nursing home direct care workers (workers providing care services to nursing home residents) to undergo abuse prevention training. In addition, several other ACA initiatives focus on improving patient safety. Chief among these is the mandate to create a national registry of nursing assistants to prevent individuals with a history of elder abuse from gaining employment in LTC settings. The ACA also provides funds to strengthen and expand the Ombudsman Program and to develop training materials for Ombudsman workers and volunteers. The program provides key resources for investigating quality-ofcare concerns from residents or family members. The ACA includes new facility and staff requirements for reporting abuse as well (Hawes et al. 2012). Overall, the impact of these efforts has been attenuated by the reliance on discretionary spending to support program goals. Unlike some aspects of the ACA, most of the provisions in the ACA’s Elder Justice Act remain dependent on congressional spending appropriations. Thus far, annual budgets have fallen short of program goals (US Department of Justice Access to Justice Initiative 2015). As of October 2019, the CMS Nursing Home Compare website was upgraded to include important updates to enable the public to better detect facilities with an abuse citation in the past 12 months

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(classified as G level or higher), or where residents were found to be potentially harmed (D level or higher) in the prior 24 months. New F tags on elder abuse, neglect, and exploitation have also been added to the state survey process (Center for Medicare Advocacy 2019b). End-of-Life Care and Other Services

In 2019, about 1.61 million hospice beneficiaries accounted for $20.9 billion in payments from Medicare (National Hospice and Palliative Care Organization 2021). As hospice use has expanded, concerns about the quality of care being provided have also grown. To address both access and quality-of-care concerns, the ACA phased in reimbursement changes and quality reporting requirements. Along with implementing a 1 percent increase in reimbursement for hospice care, the ACA required CMS to establish quality reporting and data collection requirements for all LTC hospitals, inpatient rehabilitation hospitals, and hospice programs receiving CMS funds. Hospices failing to submit quality reports by 2014 incurred a 2 percent reduction in payments. A Hospice Experience of Care Survey for informal caregivers of hospice patients was implemented in 2015 as another tool for measuring quality of care. The ACA also required a system for making hospice quality data available to the public—similar to the Medicare Care Compare website for skilled nursing facilities (CMS 2015b). In 2021, CMS passed a Final Rule updating its Conditions of Participation for Hospice Providers, as well as its Hospice Quality Reporting Program (CMS 2021c). Workforce Training and Retention

Nursing home quality of care is inextricably linked to nursing staff levels. Despite increases in the level of care needed and the complexity of care provided in nursing homes since the early 1990s, staffing requirements have remained relatively static over time (Harrington et al. 2011). Poor training and working conditions, high turnover rates, and instability in the workforce have had a negative impact on quality of care (Castle 2008). The ACA has a number of provisions aiming to strengthen the workforce, with more than $100 million to be used for workforce training. This total includes funds to build geriatric curricula and expand existing geriatric training centers. Under the ACA, direct care workers in nursing homes must complete training in dementia care, abuse prevention, and behavioral health and trauma-informed care (Eldercare Workforce Alliance 2022). Changes

in

Medicare Conditions

of

P a rt i c i pat i o n

In addition to changes from the Affordable Care Act, CMS revolutionized the regulatory process for many long-term care providers through changes in their Medicare Conditions

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Conditions of Participation Requirements that healthcare organizations and providers must meet to participate in the Medicare and Medicaid programs.

D i m e n s i o n s o f L o n g - Te r m C a r e M a n a g e m e n t

of Participation. Conditions of Participation are health and safety standards ensuring quality of care health care organizations must meet to begin and continue participation in the Federal Medicare and Medicaid programs. These standards are incorporated into accreditation processes for health care providers (called “deemed status”) to ensure that the accrediting organizations meet or exceed the Medicare standards set forth in the Conditions of Participation (CMS 2021c). In 2008, changes in the Conditions of Participation for hospice providers were enacted. The final rule focused on the care delivered to patients and their families by hospices and the outcome of that care. These requirements acknowledged the interdisciplinary view of patient care and allow hospices flexibility in meeting quality standards. In 2016, changes in the Medicare Conditions of Participation for skilled nursing facilities were enacted to reflect changes in the philosophy, theory, and practice of longterm care service delivery, as well as the importance of quality and safety standards (CMS 2021c). Changes included the introduction of a new Federal Long-Term Care Survey for Skilled Nursing Facilities and a new series of survey protocols and interpretive guidance that clarify and explain the intent of the new regulations (CMS 2021c). Other changes in Medicare and Medicaid Conditions of Participation included home health providers in 2017. The changes reflected a focus on patient-centered care, patient rights, and value and outcome-based care in an effort to promote high-quality care in the home health arena. (Burks 2017).

O p p ort u n it i e s

and

C ha llenge s

in the

2020 s

In 2018, the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act was signed into law. The act requires HHS to develop and maintain a strategy to recognize and support the more than 43 million Americans who serve as unpaid caregivers. The 30-member RAISE Caregiving Advisory Council was created to advise HHS on effective models of family caregiving and support (AARP 2021a; ACL 2022b). It makes recommendations to improve coordination across federal programs. Over a two-year series of meetings, the council developed the following recommendations for meeting five core goals (AARP 2021a): ◆◆ Expand outreach and education for family caregivers and public awareness of the needs and challenges they face. ◆◆ Engage caregivers as partners in providing health care and long-term services and supports for their loved ones. ◆◆ Improve access to services and supports such as respite care, counseling and transportation assistance. ◆◆ Ensure financial and workplace security for family caregivers. Copying and distribution of this PDF is prohibited without written permission. For permission, please contact Copyright Clearance Center at www.copyright.com.

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◆◆ Generate research, data, and evidence-based practices to develop policies and programs that meaningfully help caregivers. The COVID-19 pandemic has had a devastating impact on the delivery of long-term services and supports. More than 200,000 nursing home residents and staff died during the pandemic, representing 23 percent of all COVID-19 deaths to date (Chidambaram 2022). Dually eligible residents were hospitalized at four times the rate of those who were not dually eligible Medicare beneficiaries, and people with developmental disabilities were estimated to be four times more likely than the general population to contract the virus, and twice as likely to die if they did contract it (Chernof and Mann 2020). COVID-19 also had a disproportionate impact on communities of color. Response to the virus reflected weakness in financing for long-term care as well as regulatory oversight. The future of long-term care delivery must include greater support of access to home and communitybased LTSS and more coordination of care between long-term care and other parts of the healthcare delivery system (Chernof and Mann 2020). CRITICAL CONCEPT The Growing Importance of LTSS

Because the US healthcare system has historically focused on providing acute care for short-term illnesses, the development and integration of LTSS as a component of person-centered healthcare has been lacking, leading to fragmented and poorly coordinated care for many people. Even when individuals have been discharged from hospitals, apparently on the road to good health, poor coordination and follow-up across various providers and levels of care can undermine quality outcomes and cause patients to suffer. Newer models of care delivery focus on developing person-centered care plans for hospital and skilled nursing home care but also extend planning to cover transitions back into the community with LTSS in place. Many accountable care organizations are including LTSS in their networks, recognizing that even the best hospital care will do little to prevent future hospitalizations if the patient has unmet care needs once back at home. Many of the initiatives ushered in under the ACA recognize the important role of family members, who often provide the bulk of caregiving. The realm of LTSS now includes services that support caregivers as well as care recipients. Although these new systems of care delivery are only in the early stages of development and demonstration, the momentum behind such initiatives is swelling, with expectations that coordinated networks of providers will smooth transitions, improve care coordination, and achieve better quality at lowered costs.

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A L oo k A h e a d Implementing all of the ACA’s LTSS reforms will take time, but some hopeful signs of progress are already emerging despite legal struggles and resistance. A key area where the impact of the ACA on LTSS will be closely watched is in the availability and quality of HCBS across states. Because many such services are funded by Medicaid and states have had considerable latitude in their eligibility standards, the services’ range, availability, and quality have been known to vary considerably. While states continue to negotiate their exact plans for new programs with CMS, most are developing initiatives to better integrate services for people dually eligible for Medicare and Medicaid. Most of these efforts were statewide and incorporated a wide range of LTSS and behavioral health services (Walls et al. 2013). The breadth of the new efforts outlined in this chapter point toward the next steps in reforming the delivery and scope of LTSS and indicate a growing willingness to focus on person-centered, comprehensive, and community-based LTSS as a basic healthcare right and need, which has been the case in many instances. These reforms are driven by concerns over quality of care, safety of older adults and people living with disabilities, and the delivery of person-centered care. The approaches described in this chapter continue to be explored at the national and state levels, with the professional organizations representing the nursing home industry, the growing hospice and home care industries, advocacy groups, and state authorities, to name a few.

F o r D i s c u ss i o n 1. Discuss the history of long-term services and supports for older adults and adults with disabilities in the United States. 2. Explain the impact of the Affordable Care Act on the delivery of LTSS to older adults and people with disabilities. 3. List and detail the key programs in the ACA aimed to support LTSS. 4. Describe the vulnerable LTSS populations of older adults and adults living with disabilities. Explain how the ACA can improve access to services for them. 5. Discuss the meaning of dually eligible adult populations and describe the reforms aimed at improving access to and delivery of LTSS for them. 6. What are the key elements in the ACA’s effort to shift LTSS from institutional to community-based care? 7. Describe the Administration for Community Living and its role in reorganizing LTSS in the United States. 8. How does the Elder Justice Act fit into the reorganization of LTSS?

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9. Discuss the impact of ACA changes in the provision of end-of-life care services to those needing LTSS. 10. How can LTSS efforts to reduce rehospitalization and overall Medicare expenses best be explained to the American public?

C a s e S t u d y : A c os New Frontier

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N u r s i n g H o m e S e r v i c e s —T h e

Suppose that you are an administrator of a large, 240-bed, privately held, nonprofit nursing and rehabilitation care facility with a designated dementia unit. You have been approached by an area hospital, from which you receive most of your skilled nursing patient referrals, about joining its accountable care organization. Communication between your director of admissions and the hospital discharge coordinator for incoming Medicare SNF residents has been difficult at times, especially in terms of establishing immediate SNF care needs such as medications and therapy plans. However, your facility has benefited from the partnership and has confidence in the hospital overall. To participate in the ACO, you will have to agree to payments for some episodes of care for which you provide rehabilitation services, and you will have to develop onsite home health services that are put in place immediately after a patient’s discharge from the skilled nursing facility to home. You are also aware that by joining the network, you will receive payment incentives for assisting the ACO in sharing risk and achieving good outcomes but may incur reimbursement losses if you are unable to meet either SNF or home health quality benchmarks. In the past three years, your overall rehospitalization rate has hovered on par with the state average, but it is lower than direct competitors in your immediate area. To achieve desired SNF outcomes, rehospitalization rates would have to drop another 4.5 percent over the next year, and 10 percent over the next five years. Joining the ACO would better position you and your organization to meet broader healthcare reform requirements while modernizing the services you provide, thereby improving your place in the market. However, it would also require substantial investment in risk management, personnel, and staff training, and new investments from company holdings for providing home care services that could facilitate smooth care transitions across the ACO. You are convinced this plan represents the best direction for the future, but you must convince your board of directors of the plan’s value. Key to winning the board’s support will be your ability to explain why combining SNF services with LTSS is a necessary next step to strengthening your organization’s position in the new healthcare environment in the era of the ACA.

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C a s e S t u d y Q u e st i o n s 1. Considering the growing emphasis on care coordination, care transitions, and community-based LTSS, what are the potential opportunities and threats associated with joining the ACO? 2. Assume you and your organization have decided to join the ACO. What will you do to begin lowering your hospitalization rates to meet ACO reimbursement goals for best practices? 3. Assume that you are in the process of negotiating your role in the ACO. What recommendations will you propose to the hospital in terms of care transitions? For example, should you try to enroll only eligible Medicare beneficiaries with a few select chronic conditions, or should you target all diagnoses? How will your answer affect hiring, training, and retaining staff?

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Walls, J., W. Fox-Grage, K. Ujvari, D. Scully, E. Cho, and J. M. Hall. 2013. Insight on the Issues: Two-Thirds of States Integrating Medicare and Medicaid Services for Dual Eligibles. Washington, DC: AARP Public Policy Institute. Watts, M. O., M. B. Musumeci, and M. Ammula. 2022. “Medicaid Home and Community-Based Services: People Served and Spending During COVID-19.” Kaiser Family Foundation. Published March 4. www.kff.org/report-section/medicaid-home-communitybased-services-people-served-and-spending-during-covid-19-issue-brief/. Wells, J., and C. Harrington. 2013. Implementation of Affordable Care Act Provisions to Improve Nursing Home Transparency, Care Quality, and Abuse Prevention. Kaiser Commission on Medicaid and the Uninsured. Published January. www.kff.org/wp-content/ uploads/2013/02/8406.pdf. Wiener, J. M., M. P. Freiman, and D. Brown. 2007. Nursing Home Care Quality: Twenty Years After the Omnibus Budget Reconciliation Act of 1987. Menlo Park, CA: Henry J. Kaiser Family Foundation. Williams, E., and E. Hinton. 2022. “Medicaid Spending and Enrollment: Updated for FY 2022 and Looking Ahead to 2023.” Kaiser Family Foundation. Published April 4. www.kff. org/medicaid/issue-brief/medicaid-spending-and-enrollment-updated-for-fy-2022-andlooking-ahead-to-fy-2023/. Woodcock, C. H. 2011. Long-Term Services and Supports: Challenges and Opportunities for States in Difficult Budget Times. Hilltop Institute. Published December. www.hilltopinstitute.org/wp-content/uploads/publications/LTSSChallengesandOpportunitiesforStatesindifficultBudgetTimes-December2011.pdf.

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PA R T I I

CARE SETTINGS FOR LONGTERM CARE SERVICES

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art II comprises chapters 3 through 9. It begins with a discussion of transitions of care (chapter 3). The myriad of long-term services and supports has evolved in recent years to include innovative care models (chapter 4), along with greater use of home and community-based services and supports and enhanced technology applications (chapter 5). Growing awareness of the importance of end-of-life service planning, including advance directives for all patients, has helped improve transitions of care for individuals with serious illness (chapter 6). Initiatives by healthcare systems to build population health management systems, both to maintain wellness and to help individuals with chronic health conditions (chapter 7), that address health disparities and health equity by addressing social determinants of health require integration of post-acute care service providers to reduce hospital readmissions and ensure quality in patient outcomes (chapter 8). Global attention has also been paid to the importance of long-term care and its impact on the economic health of countries, and collaborative models have started to emerge and gain the attention of policymakers (chapter 9). Knowledge of the variety of services and supports that exist for long-term care consumers may encourage new ideas for better delivery options, as well as new career opportunities for future long-term care leaders.

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CHAPTER 3

TRANSITIONS OF CARE Robert R. Kulesher, PhD, FACHE, and Mary Helen McSweeney-Feld, PhD

Learning Objectives After completing this chapter, you should be able to ➤➤ discuss transitions of care between acute care, residential long-term care, and home and community-based long-term care settings within the United States healthcare delivery system; ➤➤ define care coordination services and discuss their importance in transitions of care; ➤➤ understand the impact of quality management principles, healthcare policies, and regulations on transitions of care; ➤➤ understand the role of technology and health information systems in the coordination of care during transitions; and ➤➤ examine future directions for transitions of care, including the impact of COVID-19 on care transitions and post-acute care healthcare delivery.

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Triple Aim Improvements in the US healthcare delivery system that simultaneously improve the patient experience of care, improve the health of populations, and reduce the per capita cost of healthcare spending.

Quadruple Aim Expansion of the Triple Aim paradigm to include improving the work life of healthcare providers as part of the quality improvement process.

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Since the passage of the Affordable Care Act (ACA), increasing attention has been paid to the transitions of individuals across the various levels and sites of healthcare services. Traditional approaches to the discharge from acute care settings to home settings or rehabilitative healthcare services have often resulted in adverse events such as the worsening of symptoms, errors in medication, and problems accessing follow-up care and testing. The Centers for Medicare & Medicaid Services (CMS) as well as healthcare providers and policymakers are concerned about improving the quality of care and reducing associated costs with these transitions. They focus on accomplishing the Triple Aim quality paradigm in care transitions: better care for individuals through use of population health principles, better quality of care, and reduced per capita cost of care (Alliance for Home Health Quality and Innovation 2014). The importance of this paradigm has been expanded to a Quadruple Aim paradigm in some organizations to include improvement of the work life of healthcare providers, both clinicians and staff, as an important part of the care delivery process (Bodenheimer and Sinsky 2014; Itchhaporia 2018). CMS applies financial penalties to acute care settings for hospital readmissions within 30 days of discharge, as well as nursing home readmissions to hospitals—a practice that underscores the growing focus on care transitions following medical procedures. However, the reality is that much remains to be learned about how to transition an individual through care settings and about the types of interventions and supportive transition services that can improve outcomes of care and quality of life for individuals and their families. This chapter explains what is meant by transitions of care and the related term care coordination. It will examine several key issues, including the types of care transitions, the role of post-acute care services in transitions of care, legislation affecting care transitions, and the development of new interventions. The chapter also provides an evaluation of transition services related to health outcomes and a look at innovative initiatives and future directions in care transitions.

T r a n s it i o n s care coordination The deliberate organization of patient care activities between two or more participants (including the patient) involved in a patient’s care to facilitate the appropriate delivery of healthcare services.

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Recall from chapter 2 that a care transition is defined as transfer or movement from one care setting to another, such as from an inpatient hospital stay to a skilled nursing facility to home health care. Complex care transitions refer to care episodes requiring multiple transfers between various providers and levels of care. Transitions of care involve efforts to ensure coordination and continuity while moving individuals from one setting of healthcare services to another. These transitions may be assisted by various types of providers that guide individuals and their caregivers through the process of receiving healthcare services or recovering from medical procedures. Care coordination is an essential part of the transitions of care process. It involves planning, organizing activities, and sharing information across two or more providers of healthcare services to ensure safer and more effective care. Effective care coordination ensures that individuals’ needs and preferences are known in advance and communicated Copying and distribution of this PDF is prohibited without written permission. For permission, please contact Copyright Clearance Center at www.copyright.com.

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at the right time to the right people so that the information can be used to provide safe, appropriate, and effective care. (Much of the information can be exchanged through electronic health record systems.) Typically, care coordination involves sharing information about the individual’s preferences, treatment goals, and health status; addressing logistical arrangements; and providing education for the individual’s caregivers, family, and loved ones (National Transitions of Care Coalition 2022b). Transitions of care can apply to any individual regardless of age, health status, or disability. However, individuals most affected by these transitions are older adults and individuals with multiple chronic health conditions. (Recall from chapter 1 that a chronic health condition is a health condition lasting for a year or longer that requires ongoing medical care or limits an individual’s activities of daily living). Transitions of care have become an increasingly important issue since the Affordable Care Act instituted penalties in the Medicare system for readmission of individuals to hospitals within 30 days of discharge (as described in chapter 2). These penalties were extended by CMS to skilled nursing homes in 2018 for higher-than-average rates of hospital readmissions from nursing homes to any hospital.

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A variety of healthcare providers are involved in transitions of care. They include acute care providers, such as hospitals; ambulatory care services; home and community-based service providers; and long-term care or rehabilitation services. Each type of provider plays an important role in facilitating care transitions through the healthcare delivery system. A c u t e C a r e P r o v i d e r s : H o s p i ta l s

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Because hospitals are usually the acute care setting where patient treatment begins, they play a major role in transitions of care. Hospitals may have health education and primary care service program initiatives in the community for at-risk elders and people living with disabilities to prevent emergency room visits, hospitalizations, and rehospitalizations (LeadingAge 2013). When an individual is admitted to a hospital for a procedure, the hospital initiates a discharge planning process that includes transitions to the patient’s home or to another setting, such as a long-term provider of rehabilitation services. Hospitals may offer specialized services within the facility for older adults or individuals with chronic health conditions, with the aim of enhancing care coordination while patients are in an inpatient setting. Such services may include specialized emergency department units for older adults—with soundproof rooms, thicker mattresses to prevent pressure ulcers (bedsores), and flooring without glare to prevent falls—as well as follow-up calls to discharged patients in the first week after returning to their homes. Although relatively few healthcare systems have implemented specialized units of this type thus far, preliminary studies have shown significant declines in hospital readmissions for patients using the services (Grudzen et al. 2015). Copying and distribution of this PDF is prohibited without written permission. For permission, please contact Copyright Clearance Center at www.copyright.com.

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Acute Care for Elders (ACE) unit An inpatient unit specializing in care for adults aged 65 or older with an acute medical condition requiring hospitalization. Individuals at risk for delirium, dementia, depression, incontinence, or falls, or those requiring large numbers of prescription drugs, are candidates for admission. discharge planning The process of planning the movement of an individual from one care setting to another care setting or back to the community. It typically involves the creation of a transitional care plan, as well as participation from a multidisciplinary team of providers.

SNFist physicians Hospital-based physicians who specialize in the transition of patients from acute care settings to post-acute care settings. SNF stands for skilled nursing facility.

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An Acute Care for Elders (ACE) unit, another form of inpatient care, specializes in geriatric care to reduce the risk of functional decline of a hospitalized older adult. Patient rooms typically include beds that can be lowered for easier access, raised toilet seats, and enhanced lighting. Care protocols may specify patient hydration, and blood draws and overnight interruptions may be kept to a minimum to encourage individuals to be as active as possible. An interdisciplinary team with specialized geriatric care training typically provides care in ACE units while also helping to facilitate individuals’ discharge back to the community or to another care setting. Studies of ACE units for older individuals have shown decreased incidence of falls, lower costs of hospital stays, and reduced 30-day hospital readmissions (Flood and Allen 2013). Some hospitals have initiated early palliative care consultations to identify patients who may need hospice or other end-of-life care services. The consultations may encourage healthcare providers to discuss such services with patients and family members, and they may lead to reduced hospital readmissions and higher quality of life for patients. A study of early palliative care interventions for patients with metastatic non-small-cell lung cancer found that the interventions led to significant improvements in patients’ quality of life and mood, as well as longer survival and less aggressive care at the end of life (Temel et al. 2010). An additional study of patients in a California hospital further demonstrated the effectiveness of inpatient palliative care consultations. When an interdisciplinary consultation team was used, readmissions to the hospital six months after consultation decreased from 1.15 to 0.7 admissions per patient, with a potential cost savings between $63,994 and $251,053 per 100 patients who had consultations (Nelson et al. 2011). A 2022 study of palliative medicine consultations for surgical patients needing mechanical ventilation for more than 96 hours also showed lower readmission rates and greater hospital cost savings (House et al. 2022). Discharge planning—the process of planning and moving a patient from one care setting to another care setting or back to the community—is an important component of a transition of care. The discharge process may begin at the time an individual is admitted to a care setting such as a hospital, nursing home, or rehabilitation service provider. The process requires an assessment of the individual’s needs and the identification of services, assistive technology, medications, and other supportive services to be included in the individual’s transitional care plan. In addition, an interdisciplinary team of healthcare providers may be involved in the transitional care plan to ensure a safe transition to the next setting. A variety of home and community-based service providers may also participate in the discharge planning process depending on the needs of the individual being transitioned. With the intensified focus on reducing hospital readmissions, hospitals have created new roles for hospital-based physicians (hospitalists) specializing in long-term services. Called SNFist physicians (based on the abbreviation SNF for skilled nursing facilities), these individuals assist the discharge planning department with facilitating patient transitions to long-term settings for post-acute services. (SNFs are discussed in chapter 4.)

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Post-acute care (PAC) includes a range of medical care services that support the individual’s continued recovery from illness or management of a chronic illness or disability (American Hospital Association 2019). Post-acute care may be delivered in a variety of settings, including in a long-term acute care hospital (LTACH), where the overall severity of illness is greater than it is for typical post-acute care patients; in an inpatient rehabilitation facility (IRF), where patients may require the care of specialty physicians, registered nurses, and therapists following such events as strokes or brain and spinal cord injuries; in SNFs; and by home health agencies (HHAs, which are discussed in chapter 5). Individuals in PAC settings receive nursing, therapy, and rehabilitation services under the direction of physicians. Although some overlap exists, each of the PAC settings offers a different level of care because of statutory requirements and payment policies (Grabowski et al. 2012; American Hospital Association 2010). Post-acute care is an important part of the US healthcare delivery system, with the Medicare fee-for-service system spending more than $57 billion on these services in 2019 (Silver et al. 2022). As reported by the Medicare Payment Advisory Commission (MedPAC 2019), in 2017, 45 percent of Medicare beneficiaries leaving acute care hospitals used post-acute care services, with 21 percent discharged to an SNF, 18 percent discharged to an HHA, 4 percent discharged to an IRF, and 1 percent discharged to an LTACH. Medicare’s payments for post-acute care services have been significant. In 2017, program payments to PAC providers totaled $59 billion, with SNFs receiving 49 percent, home health agencies 31 percent, and inpatient rehabilitation facilities and long-term care hospitals 1 percent each (MedPAC 2019). An individual’s functional status, complications, and comorbidities—together with nonclinical factors such as family support, home environment, and care preferences—influence the selection of a particular PAC setting. For instance, a stroke patient requiring medically complex treatment might need the hospital-level rehabilitative care typically provided by an IRF. Meanwhile, a frail older adult who has had a stroke might need to remain in an SNF, whereas a more stable stroke patient might be treated through home visits. The PAC landscape will continue to evolve as providers experiment with new delivery models.

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post-acute care (PAC) Care delivered after a stay in an acute care hospital. Settings for such care include long-term acute care hospitals, inpatient rehabilitation facilities, skilled nursing facilities, and home health agencies.

long-term acute care hospital (LTACH) A facility that treats patients who require intensive, long-term services for complex problems for more than 25 days. Care at an LTACH often follows an acute care hospitalization.

inpatient rehabilitation facility (IRF) A facility licensed as a hospital or certified unit of a hospital and oriented toward intense courses of rehabilitation and

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Home and community-based service providers are also involved in the discharge planning and care transitions process. However, they have not always been sufficiently recognized as a critical partner in management of post-acute care transitions or included as members of the care transition team. In response, a home health model of care transitions has been developed to prevent hospital readmissions and improve the patient’s satisfaction with care using five core values: (1) a patient-centered focus; (2) medications management; (3) communication and care coordination; (4) timely follow-up by the care team, and (5) patient activated education and coaching (Alliance for Home Health Quality and Innovation 2014). The model focuses on a 60-day home health period from discharge from an

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acute stay in the hospital. A discharge plan is created prior to the individual’s transition to another setting. Medical information about the individual—including specific instructions for medications and other types of care—will often be provided to the individual’s primary care physician and caregivers within seven days of discharge. A list of home health agencies, medical equipment providers, and community service organizations may be provided to individuals needing transitional care. An individual with a terminal illness or condition, as certified by a hospice medical director or other medical professional, may be transitioned to end-of-life services in the community (e.g., hospice or palliative care). The Older Americans Act and Aging Network services such as Area Agencies on Aging or Aging and Disability Resource Centers (discussed at length in chapter 5) are required by federal statute to help connect individuals to community services and supports. These organizations may be involved in the discharge planning process to help avoid hospital readmissions by assisting in securing transportation to follow-up doctors’ appointments and arranging home-delivered meals to ensure good nutrition while the patient recovers at home. Centers for Independent Living, a grassroots network of community service providers operated by individuals living with disabilities for people living with disabilities, may also be involved in care transitions; they may also have funding to assist individuals with movements back to the community. CASE FROM THE FIELD Vermont’s Support and Services at Home (SASH) Program

Launched in 2011, Vermont’s Support and Services at Home (SASH) program is part of a larger Medicare initiative, the Multi-Payer Advanced Primary Care Practice demonstration. SASH provides a model of care coordination services for approximately 5,000 people centered on affordable housing sites for older adults (SASH 2022). It connects residents with community-based services and promotes population health and coordination of healthcare services using on-site staff (a coordinator and wellness nurse), wellness assessments, individual plans of care, and one-on-one nurse coaching. Services also include assistance in transitions of care for program participants discharged from hospitals. SASH has also worked diligently to support its program participants during the COVID-19 pandemic (SASH 2020). An analysis using claims data from a sample of Medicare fee-for-service beneficiaries found that growth in annual total Medicare expenditures was lower, by an estimated $1,756 to $2,197 per beneficiary, among beneficiaries enrolled in well-established SASH panels than among members of comparison groups (Office of the Assistant Secretary for Planning and Evaluation 2014). Another study found that the 3,300 SASH participants with advance directives could translate into a savings of $18.4 million in end-of-life care (SASH 2018).

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Family caregivers and loved ones may also be involved in the care transitions process. In 2019, CMS finalized the guidelines for discharge planning for patients and their caregivers, requiring hospitals to focus on patients’ goals and preferences for care, as well as access to their medical records in an electronic format. In addition, if a patient is being discharged to a PAC provider, the rule requires the facility’s care team to assist patients, their families, or the patient’s representative in selecting a PAC provider by sharing key performance data. This data must be relevant and applicable to the patient’s goals of care and treatment preferences (CMS 2019b).

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Traditionally, the US healthcare system has focused on acute care needs, with treatment typically provided in acute care hospitals—that is, places where sick people would stay until they recovered. In contrast, nursing homes were facilities where older adults lived and received care. Post-acute care delivery evolved in response to Medicare, Medicaid, and private insurance reimbursement policies, with the aim of accommodating the acute care model of treating time-limited and specific illnesses or injuries (Wagner et al. 2001). Ultimately, the aging population and the growing prevalence of chronic disease made the acute care focus insufficient. According to CMS Medical Expenditure Panel data from 2017, 67 percent of Medicare beneficiaries have at least two chronic conditions, and 38 percent report four or more conditions (CMS 2019a). Though these individuals may experience acute illnesses throughout their lifetime, such episodes will be complicated by the presence of chronic conditions that must also be attended to by medical, long-term care, and support systems (Golden and Shier 2013). Changes in payment systems have had a profound influence on the transition from acute to post-acute care. The shift to prospective payments created incentives for hospitals to decrease patient length of stay. Patients no longer stay in the hospital until they are completely well; instead, they are discharged to post-acute settings such as rehabilitation hospitals, long-term care facilities, nursing homes, and skilled nursing facilities for recovery. Though acute and post-acute care play distinct roles in healthcare service transitions, collaboration between the two is critical for smooth, efficient care management (Wolf 2003). The need for collaboration has become even greater with increased focus on value-based care and approaches that target the Triple Aim model of quality (Hirschman et al. 2015). Care provided in the acute, episodic model may not meet the needs of patients with chronic conditions. Evidence of poor clinical outcomes and unnecessary spending of Medicare and Medicaid resources has prompted new thinking related to the management of post-acute care services and care transitions. Patients with chronic conditions require continuous care and coordination across healthcare settings and providers. They often also require supportive services such as personal assistance, home health care, or help navigating the healthcare system. Such services need to be readily available and coordinated with clinical treatment for maximum effectiveness (Anderson 2010). Copying and distribution of this PDF is prohibited without written permission. For permission, please contact Copyright Clearance Center at www.copyright.com.

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transitions coach An individual who specializes in assisting patients and residents in movements through the care transitions process. Also called care navigator.

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In a system where individuals being treated can move from an emergency room to a hospital to a rehabilitation facility and then to a nursing home, collaboration is essential for ensuring smooth transitions (Wolf 2003). Transitions in care interventions should provide a coordinated health professional approach that includes clear and transparent dissemination of information as well as active support for patients and their family members (Charles et al. 2020). Failure to coordinate information between levels of care can impede patients’ recovery at home or in a post-acute facility and, in some cases, put patients in danger of losing their ability to care for themselves. Data from a variety of studies show what providers need to do when patients transition from one level of care to another. Key tasks include managing and reconciling medications, sharing detailed information with the next level of care, and ensuring patient and family involvement (AHC Media 2011). Studies support the use of a transitions coach—sometimes called a care navigator—to deliver transitional care services for post-acute care patients and their family and caregivers (Toles et al. 2012, 46). Transition coaching can also help reduce the number of readmissions to acute care (Gardner et al. 2014; Voss et al. 2011). In 1990, Dr. Mary Naylor developed the Transitional Care Model (TCM), a nurseled intervention targeting older adults at risk for poor outcomes as they move across health care settings and physicians. The TCM intervention focuses on improving care, enhancing patient and family caregiver outcomes, and reducing costs among older adults identified in health systems and community-based settings, such as patient-centered medical homes. Advance practice nurses identify patient goals, design a streamlined plan of care, and ensure continuity of care across settings by supplementing the care provided in the hospital as well as at home (Hirschman et al. 2015). In a study funded by the National Institute of Aging, the care experiences and health and quality of life outcomes of hospitalized, communitybased, cognitively impaired older adults who received the TCM were compared with similar groups who received other evidence-based interventions. Older adults who received the TCM had significantly fewer all-cause rehospitalizations through six months postindex hospitalization (Naylor et al. 2014). In 1999, Dr. Eric Coleman started the Care Transitions Intervention, a Coloradobased program that uses transitions coaches to help individuals identify their goals after discharge and navigate the care transition process. The program reported reductions in hospital readmissions between 20 and 50 percent and a net savings of $365,000 per transitions coach over 12 months. Additionally, the majority (52 percent) of participating patients reported meeting or exceeding their transitions process goals (Care Transitions Program 2022). In the wake of the findings from these two models, CMS launched its Community-Based Care Transitions Program, which was included in the Affordable Care Act (discussed later in this chapter).

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Research on care transitions has shown persistent problems related to the movement of patients across settings, with resulting high hospital readmission rates. Studies of discharge planning from hospitals to the community have found that approximately one-third of hospital readmissions could be avoided by instituting a more comprehensive system of transitional care (Coleman et al. 2006; Naylor and McCauley 1999). A 2013 study of nearly 400 patients discharged from a large academic medical center found that older adults were often confused about the discharge planning process. In the study, 96 percent of older adults reported knowing why they had been hospitalized, but only about 60 percent could accurately describe their primary diagnosis (Horwitz et al. 2013). Additionally, research suggests that patients who receive post-acute care services following a major health episode see greater and more rapid clinical improvements compared with patients who are discharged to their homes without follow-up (American Hospital Association 2010). Interventions such as discharge planning, patient and family teaching, and home visits after discharge improve continuity of care and prevent poor health outcomes among older adults (American Hospital Association 2010; Coleman et al. 2006; Jack et al. 2009; James 2013; Naylor et al. 2004; Naylor et al. 2011; Toles et al. 2012). Research has also focused on specific conditions causing hospital readmissions, the cost of readmissions, and reimbursement factors affecting discharge practices. A study by Ouslander and colleagues (2010) found that several common medical problems—cardiovascular conditions, respiratory conditions, acute mental changes, sepsis and fever, dehydration, skin conditions, and gastrointestinal disorders such as diarrhea—accounted for 95 percent of hospitalizations that were rated potentially avoidable. A 2011 study by CMS found that one in five Medicare beneficiaries who were discharged from a hospital were readmitted within 30 days, costing over $26 billion per year, with an estimated $17 billion (65 percent) of those costs deemed to be preventable (Betancourt, Tan-McGrory, and Kenst 2015; James 2013). A Wall Street Journal study of Medicare claims paid from 2008 through 2013 found that some hospitals discharge Medicare patients to nursing homes at particular times to maximize reimbursement for particular types of diagnoses and care (Weaver, Mathews, and McGinty 2015). Research on the impact of Medicare’s Readmissions Reduction Program on skilled nursing facilities has also shown that the program’s effectiveness depends on whether a diagnosis has been included in the program. A study of Medicare beneficiaries discharged from hospitals to SNFs from 2007 to 2015 found that readmissions declined for diagnoses included in the Readmission Reduction Program, such as acute myocardial infarction, heart failure, and hip/femur fracture, but did not decline for diagnoses that are not included in the program, such as total hip arthroplasty or total knee arthroplasty (Li et al. 2020).

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Hospital-at-Home An innovative care model used by healthcare organizations that provides hospital-level care in a patient’s

Research indicates that hospital-owned SNFs have shorter hospital length of stay, and the lowest overall costs, without increased risk of readmissions, compared with independent SNFs. (Behery et al. 2018). Others found that direct ownership between hospitals and SNFs increases Medicare payments and reduces rehospitalization rates (Konetzka, Stuart, and Werner 2018). Still others found that hospital-based SNF admissions can shorten SNF length of stay and return patients back to the community with a lower likelihood of hospital readmission (Rahman, Norton, and Grabowski 2016; Weerahandi et al. 2019). For similar kinds of hospitalizations, there appears to be little difference in readmission and quality outcomes between a post-acute stay in an SNF and home with home health care (Balentine et al. 2018). Dedicating higher acuity level medical and nursing services to patients recently discharged from the hospital can be achieved through a Hospital-at-Home. The Hospitalat-Home model provides hospital-level care in a patient’s home to decrease the length of stay in an acute care facility. In comparison with patients receiving inpatient care, Hospitalat-Home patients experience shorter hospital stays, lower rates of hospital readmission and emergency department visits, and fewer admissions to SNFs (Federman et al. 2018). The accompanying Critical Concept sidebar provides more information on Hospital-at-Home.

home as a full substitute for acute hospital care, promotes patient-centered care,

CRITICAL CONCEPT Hospital-at-Home

and helps reduce hospital readmission stays.

The Hospital-at-Home care model is initiated when a Hospital-at-Home physician or nurse practitioner writes an admission note and orders, and a patient is transferred home by ambulance or taxi service. After the patient is home, a physician or nurse practitioner provides home-based acute care services, including physical examination, illness and vital signs monitoring, intravenous infusions, wound care, and education regarding the patient’s illness. When the patient enters the post-acute period, nurses and social workers provide self-management support and coordination of care with primary care clinicians, specialists, rehabilitation, and outpatient testing as needed. Durable medical equipment, phlebotomy, and home radiography also may be provided as needed. Patients can be transferred back to the hospital for evaluation in the emergency room with or without inpatient admission if their condition deteriorates or if desired by the patient during the acute care period. Physicians are available 24 hours a day and are certified to direct paramedics, who are available for urgent evaluation at any time (Federman et al. 2018).

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Older adults with multiple chronic conditions frequently experience inadequate care transition services. Lack of coordination and poor transition increase the likelihood of service duplication, care fragmentation, care delays, and medication errors, along with other adverse outcomes (Coleman et al. 2005; Schoen et al. 2011). It is more difficult for older patients to recover, regain independence, and return home after hospital discharge. Functional status is a prime predictor of outcomes for older adults. In addition, there are some patients who are difficult to place in post-acute settings because of obesity, cancer, or complex surgery (Balentine et al. 2017; Bradway et al. 2017; Ibrahim et al. 2017). These issues have prompted the development of guidelines for effective transitions of care from acute to post-acute care settings. Seven essential intervention categories for designing transitions strategies across the continuum of care have been identified by the National Transitions of Care Coalition (NTOCC 2022a, 2022b), as shown in exhibit 3.1.

L aw s

and

R e g u lat i o n s A f fect ing C are T ransi t ions

CMS has implemented several Affordable Care Act provisions related to the coordination of transitions from acute to post-acute care. For example, Medicare will bundle reimbursement payments for episodes of care so that one payment for acute and post-acute services must be distributed to the providers participating in a patient’s care. In addition, hospitals as well as post-acute providers can be penalized for seemingly preventable readmissions to acute care within 30 days of discharge. Additional provisions are discussed in the sections that follow.

Community-Based Care Transitions Program A Centers for Medicare & Medicaid Services program that helps community-based organizations form partnerships with healthcare

C o m m u n i t y -B a s e d C a r e T r a n s i t i o n s P r o g r a m

The ACA created the CMS Community-Based Care Transitions Program as part of the Partnership for Patients initiative. The program, which began in 2011, puts communitybased organizations in charge of identifying the needs of Medicare beneficiaries who are moving from a hospital to their homes, as well as coordinating care to address those needs. It encourages partnerships between community-based organizations providing services to elders—such as Area Agencies on Aging, Aging and Disability Resource Centers, and Meals on Wheels organizations—and healthcare systems, long-term care communities, rehabilitation facilities, and other post-acute care providers. The program and other parts of the Partnership for Patients initiative aim to reduce hospital-acquired conditions among Medicare beneficiaries by 40 percent, reduce hospital readmissions by 20 percent, and improve the hospital discharge and care planning process (Hostetter and Klein 2012).

systems, long-term care organizations, rehabilitation facilities, and other post-acute care providers. It aims to identify the needs of Medicare beneficiaries recently discharged from hospitals to their homes, coordinate the care of those individuals, and reduce hospital-acquired conditions and hospital readmissions.

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Continuum of Care

Health

Identify interdisciplinary care teams: MD, pharmacist, APN RN, SW, CM, allied health, community health workers, and community agencies to ensure that a healthcare provider is responsible for the care of the patient at all times

Follow-Up Care

Ensure timely access to medications and key healthcare providers & communicate importance to patients and their family caregiver

Collaborative care planning & implementation, use shared decision making with patient & family incorporating findings of patient assessment including Social Determinants of Health

Implement bi-directional communication with provider to provider at the next level of care and provide information to the patient and family caregiver

Information Transfer

Transition Planning

Conduct & complete a comprehensive patient and caregiver medication intake and needs assessment, develop a medication plan which is shared with the collaborative care team

Sub-acute Acute Hospitalization Rehab

Medication Management Services & Coordination

Ambulatory Hospice Primary Diagnostic PostCare Care Case/Disease Community & Treatment Acute/LTC Services Center Management

Health

Home Health Palliative Care Specialist

Nurse or social work case manager needs to conduct an assessment including SDOH and develops educational plan which is shared with care team and transferred to the next care setting

Source: Reprinted with permission from the National Transitions of Care Coalition, 750 First St., NE, Suite 700, Washington, DC 20002, www.ntocc.org.

Healthcare Provider Engagement & Shared Accountability Across the Healthcare Continuum

Providers need to assess the whole individual. Ensure complete assessment of all areas to avoid missing crucial factors that may significantly affect others; they are not separate domains but integrated.

Physical Health, Mental Health/SUD, Social Determinants of Health Triune

Patient & Identified Family Caregiver Engagement /Education

EXHIBIT 3.1 NTOCC’s Seven Essential Intervention Categories

80 D i m e n s i o n s o f L o n g - Te r m C a r e M a n a g e m e n t

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A cc o u n ta b l e C a r e O r g a n i z at i o n s

Accountable care organizations (ACOs), as introduced in the ACA (and discussed in chapter 2), provide models for the integrated delivery of healthcare services. ACOs are groups of providers and suppliers of healthcare and health-related services, along with others caring for Medicare beneficiaries, that voluntarily work together to coordinate care under the traditional Medicare program. The ACA enables ACOs that enroll a minimum of 5,000 Medicare fee-for-service beneficiaries to share in cost savings to the federal Medicare program under the Medicare Shared Savings Program, based on ACO performance in improving quality and reducing costs (CMS 2021a, 2022a). Some post-acute care providers have begun entering agreements with ACOs to establish and implement care protocols, to develop processes for care coordination and transitions, and even to integrate completely with acute care providers. CMS B u n d l e d P ay m e n t A d va n c e d )

for

C a r e I n i t i at i v e P r o g r a m s (BCPI

and

BCPI

The Bundled Payments for Care Improvement (BPCI) initiative was comprised of four broadly defined models of care, which linked payments for multiple services received by Medicare beneficiaries during an episode of care. Under the initiative, organizations entered payment arrangements that included financial and performance accountability for episodes of care. These models aimed to increase quality and care coordination at a lower cost to Medicare. Further studies on BPCI showed lower expenditures, lower readmissions, and higher rates of return to the community (Curtin, Russell, and Odum 2017; Huckfeldt et al. 2017). Although most of these programs ended in 2018, evaluation of program outcomes shows positive results from these programs. CMS Bundled Payments for Care Improvement Advanced (BCPI Advanced) have now incorporated many of these elements from the bundled payment programs initiative (CMS 2022b).

Hospital Readmissions Reduction Program (HRRP)

R e a d m i s s i o n s R e d u ct i o n P r o g r a m s

The Affordable Care Act added Section 1886(q) to the Social Security Act, establishing the Hospital Readmissions Reduction Program (HRRP). This program requires CMS to reduce payments to hospitals that have excess readmissions from discharges that occurred after October 1, 2012, for six specific diagnoses: “acute myocardial infarction (AMI), chronic obstructive pulmonary disease (COPD), heart failure, pneumonia, coronary artery bypass graft (CABG) surgery, [and] elective primary total hip arthroplasty and/or total knee arthroplasty (THA/TKA)” (CMS 2021b). The Readmissions Reduction Program was extended by CMS to skilled nursing facilities in 2018. It includes a 30-day, all-cause readmissions

A program under the Affordable Care Act that requires the Centers for Medicare & Medicaid Services to reduce payments to hospitals that have excess readmissions of discharged Medicare beneficiaries.

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measure for a readmission to any hospital from an SNF participating in Medicare and Medicaid within 30 days following a hospital discharge (Rau 2018). In response to the HRRP, hospitals have trained their staffs to identify and track the potential of PAC services for patients with the conditions being tracked. CMS (2019c) has also published a Discharge Planning Checklist that it encourages patients and their caregivers to use when patients are about to be discharged from a hospital, nursing home, or other setting. The checklist encourages individuals to ask questions about their care, to set goals for themselves after discharge, to track their medications, and to make a list of follow-up appointments with healthcare providers. W o r k i n g T o wa r d C o m m o n A s s e s s m e n t Protecting Access to Medicare Act (PAMA) of 2014 Legislation requiring that the Centers for Medicare & Medicaid Services specify an all-cause, allcondition hospital readmission measure for nursing homes and an all-condition, risk-adjusted rate for potentially preventable

Policymakers and providers have agreed on the need for a single assessment with common data metrics used by all care transitions settings. A uniform assessment tool could help providers and patients work together to select the most appropriate post-acute care setting, encourage efficient data sharing among providers, and improve data analysis (American Hospital Association 2010). Consistent assessment could also help measure rates of hospital readmission across providers and inform the implementation of value-based payments for services to nursing homes in the future. To better coordinate transitional care from hospitals to post-acute care and to improve data collection and analysis, industry leaders petitioned legislators to enact the Protecting Access to Medicare Act and the Improving Medicare Post-Acute Care Transformation Act, both in 2014. The two acts complement each other by improving measurement of hospital readmissions and standardizing measures for resident assessment, resource use, and quality data.

hospital readmissions.

The Protecting Access to Medicare Act of 2014 (PAMA) Skilled Nursing Facility Value-Based Purchasing Program A program within the Protecting Access to Medicare Act that links Medicare Part A payments to skilled nursing facilities that participate in Medicare and Medicaid to their rehospitalization rate.

The Protecting Access to Medicare Act (PAMA) of 2014 required that CMS specify an all-cause, all-condition hospital readmission measure for nursing homes by October 1, 2015, and an all-condition, risk-adjusted rate for potentially preventable hospital readmissions by October 1, 2016 (Senft and Larson 2015). As a result of this legislation, nursing homes have uniform readmissions measures that they can use to compare their performance with that of their peers. This readmissions performance data is now publicly available on the CMS Nursing Home Compare website. Collection and publication of nursing home readmission data, as well as other performance measures, help determine CMS’s Skilled Nursing Facility Value-Based Purchasing Program payments established in 2018 as part of PAMA. Under this program, Medicare Part A payments are linked to an SNF’s rehospitalization rate (American Health Care Association 2022).

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The IMPACT Act of 2014

The IMPACT Act of 2014 expanded data collection and reporting beyond nursing homes, as required by PAMA, to all post-acute providers. Specific IMPACT Act provisions include the following (CMS 2021c; DeJong 2016):

Improving Medicare Post-Acute Care Transformation (IMPACT) Act of 2014

◆◆ Require PAC providers to report standardized data on patient and resident assessment, quality measures, resource use, and other matters

Legislation requiring

◆◆ Require the data to be interoperable to facilitate its exchange among PAC and other providers, to improve access to longitudinal information, and to help coordinate care and improve beneficiary outcomes

report standardized

◆◆ Modify PAC assessment instruments for the submission of standardized patient assessment data for PAC providers and enable data comparison across providers

and data on resource

The goal of the IMPACT Act is to improve Medicare beneficiary outcomes, improve provider understanding of patient needs and improve coordination of services, and better evaluate performance of providers and settings. Through a massive reworking of patient assessment data in all four formal post-acute care settings, the IMPACT Act permits tracking of patients’ post-acute functioning and needs across care settings. CMS also hopes to facilitate research on types of care and practices that result in better patient care (Greenberg 2016). Ultimately, the IMPACT Act provisions will lead to a prospective payment system that promotes coordinated transitions of care that help patients achieve their goals and have high-quality outcomes. The act may also encourage the adoption and use of specialized technology, such as interoperable electronic health records, and health information systems by post-acute care providers to assist in data collection and reporting.

post-acute care (PAC) providers to patient and resident assessment data, data on quality measures, use and other measures. The law also requires that the data be interoperable to allow for its exchange and comparison among PAC and other providers.

T h e D i s ch a r g e P l a n n i n g R u l e

In 2015, CMS proposed a Discharge Planning Rule that requires healthcare providers to develop personalized, detailed discharge plans for patients within 24 hours of admission (including a system for postdischarge follow-up and medication reconciliation) and complete the plan before transitioning the individual to the community or to another care setting. Individuals covered under this rule include all Medicare inpatients; eligible outpatients, including individuals under observation status; and surgical patients and emergency department patients who need care transition plans. This rule also includes planning for individuals with psychiatric or mental health diagnoses, including identification of mental health organizations able to form partnerships for behavioral health service provision (CMS 2015).

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In 2019, this Discharge Planning Rule was finalized to require the discharge planning process to focus on a patient’s goals and treatment preferences. Hospitals are now mandated to ensure each patient’s right to access their medical records in an electronic format. The rule also implements requirements from the IMPACT Act of 2014 that address how a patient’s goals of care and treatment preferences will be documented. Additionally, if a patient is being discharged to a long-term care provider, the facility’s care team must assist patients, their families, or the patient’s representative in selecting a PAC provider by sharing key performance data. CMS expects providers to document all efforts regarding these requirements in the patient’s medical record (CMS 2019b).

T h e F ut u r e Services

of

C are T ransi tions

and

P os t -A cu te C are

In the twenty-first century, multiple factors are affecting transitions of care and PAC services. We will examine five such factors: (1) PAC referrals, (2) care transitions and end-of-life care, (3) remote monitoring technologies, (4) supportive social services, and (5) COVID-19. P o s t -A c u t e C a r e R e f e r r a l s

and

A lt e r n at i v e P ay m e n t M o d e l s

As of 2022, CMS has continued to use versions of the BCPI (CMS 2022c). By funneling more patients to post-acute providers that achieve excellent results, hospitals will likely avoid penalties for excessive readmissions (Mullaney 2014). However, ethical dilemmas may emerge when a hospital or healthcare system attempts to limit competition through this type of referral system. The free choice of consumers to obtain post-acute care services, regardless of programmatic restrictions for reimbursement, is a key component of the US market-based healthcare and long-term care service delivery systems. Effective readmission reduction strategies, such as the use of nurses or other transition coaches to follow up with patients after discharge, may be difficult for many organizations (particularly “safety net” institutions) to afford. Medicare does not provide any direct payment to hospitals for transition coach services. As a result, the unreimbursed costs, together with reduced revenues from fewer readmissions, may raise doubts about the cost-effectiveness of hospitals’ efforts to avoid readmission penalties (James 2013). Hospitals are specifically prohibited from limiting patient choice regarding post-acute care providers. The IMPACT Act also requires patient involvement in discharge planning, which may lead to more specific discharge plans with the primary goal of allowing a patient to recover and heal in a home-based setting model (Luke 2015). If hospitals are able to improve coordination with some post-acute care providers or identify low-cost high-quality providers, there is no guarantee that patients will select those providers (Lau et al. 2014; Sinaiko and Rosenthal 2010).

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Care Transitions

and

85

E n d - o f -L i f e C a r e

Older adults who have lived with multiple chronic illnesses for many years often have frequent readmissions to the hospital. One initiative seeking to address this issue is the Advanced Illness Management program, started in 2010 by California-based Sutter Health. The program provides an integrated service delivery model that advises individuals and their families about the transition to hospice and end-of-life services while the individuals still receive medical care in the community at home. An interdisciplinary team of healthcare professionals will consult with an individual and their family while the individual is in the hospital, and the team will institute a plan of approximately one year that shifts from acute procedures to palliative care services while also ensuring that a set of advance directives is in place. Research has found that the Advanced Illness Management program reduced hospitalizations by 60 percent in the first 90 days of an individual’s enrollment, reduced emergency room visits by 30 percent, decreased days in intensive care by 75 percent, saved payers approximately $5,000 per enrollee over the first 90 days, and generated consistently high patient satisfaction scores (Johnson 2014). The value of advance directives for elders with dementia was further highlighted by a 2014 study that linked advance directives to reductions in Medicare spending ($11,461 less per patient), likelihood of in-hospital death (17.9 percent lower), and use of the intensive care unit (9.4 percent lower) (Nicholas et al. 2014). R e m o t e M o n i t o r i n g T e ch n o l o g i e s

Some post-acute care providers have adopted innovative technologies such as telehealth and remote monitoring systems that can allow a team of registered nurses to monitor a resident on a 24-hour basis. Several organizations are finding that these technologies can bring about cost savings, more effective resource utilization, and lower hospital readmission rates. In 2013, the Centura Health at Home Demonstration in Colorado found that augmenting its program with telehealth services through a 24/7 clinical call center contributed to a 62 percent reduction in 30-day rehospitalizations related to congestive heart failure, chronic obstructive pulmonary failure, and diabetes. Rehospitalization rates for patients receiving telehealth home care (6.3 percent) were significantly lower than the rates for traditional home care patients (18 percent) (Broderick and Steinmetz 2013). Similarly, in 2008, the implementation of a remote monitoring system in Minnesota’s Northfield Retirement Community enabled administration to create more individualized care plans, use staff more effectively, and provide more intensive rehabilitation services to individuals who truly need them (Nordine 2014). Subsequent studies of remote monitoring technologies have shown improvements in tracking blood glucose readings, providing real-time alerts to physicians if a nursing home resident has an out-of-range glucose reading (Feramisco 2021).

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S u pp o rt i v e S o c i a l S e r v i c e s

As health systems are increasingly held accountable for health outcomes and for reducing the cost of care, they need tools and interventions that address patient and community factors contributing to excess utilization (Alley et al. 2016). Some providers have partnered with social services organizations to form Accountable Health Communities, which provide supportive services such as nutrition assistance, transportation, and housing needs and personal safety assessments to ensure the recovery of recently discharged individuals to their homes. (Accountable Health Communities are described in greater detail in chapter 5.) Partnerships with Meals on Wheels programs have helped ensure adequate nutrition services at home for many recently discharged individuals. Meals on Wheels, Inc. of Tarrant County, Texas, for instance, developed a home-delivered meals program to support transitions from hospital to home within eight days of discharge. A study of the program found that client self-report of healthcare utilization (i.e., hospital readmission) at three months and six months was lower than expected given client characteristics (Cho et al. 2015). Some healthcare providers have also partnered with local Area Agencies on Aging to obtain transportation services for individuals who were discharged from the hospital and needed rides to outpatient follow-up appointments. In the years ahead, policymakers will have to closely monitor the impact of the Affordable Care Act reforms, Medicare’s proposed rules, and various demonstration programs on care transitions. They also must be prepared to amend policies as necessary to ensure that reforms exert effective controls on spending without compromising the delivery of appropriate, personalized post-acute services (Grabowski et al. 2012). Care Transitions

and

C o v i d -19

The COVID-19 pandemic caused significant disruptions to the US healthcare delivery system, including care transitions to skilled nursing facilities as well as discharges to patients’ homes. While the full impact of this event is still being studied, many initiatives have been taken to integrate use of specialized care transitions technology by hospitals and post-acute care providers to address problems that can occur during patient transitions. Applications help identify available SNF beds for COVID patients being discharged from the hospital and detect any hospital readmissions for patients discharged home from a skilled nursing rehabilitation episode (Spanko 2020). Other observations include the importance of using communication tools between health care providers, as well as the importance of updated end-of-life preferences and advance directives to facilitate effective care transitions for older adults during pandemics or epidemics (Resnick 2020).

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A Look Ahead As a result of the impact of changing CMS value-based payment strategies and COVID-19, models for post-acute care transitions continue to evolve. The need continues for collaborative strategies and interventions that support complex older adults in acute care and in their discharge into the community. Greater use of telehealth services during the pandemic, as well as new codes for billing of remote patient monitoring services (Lacktman and Ferrante 2021) have prompted use of these transitioning technologies in post-acute, long-term care, and home health care settings. In addition, health systems should recognize that care transition processes have variable outcomes, patients experience substantial health issues and need supports when they return to the community to access care, and potential health disparities may also exist in the care transition process (Jones et al. 2022).

For Discussion 1. What are care transitions, and how are they related to care coordination? 2. What is the Triple Aim, and how does it help improve the quality of care transitions? How does it differ from the Quadruple Aim? 3. What is discharge planning, why is it important, and what types of care settings can patients be discharged to? (Name and describe at least three types of settings.) 4. What are some benefits of collaboration between acute care and post-acute care settings in the care transitions process? 5. Describe the role of acute care and community-based settings for care transitions. What types of community service providers should be contacted to assist in an individual’s care transitions, especially if the individual lives alone? 6. What are transitions coaches, and why are they important in the care transitions process? 7. What are accountable care organizations, and how can they help the care transitions process and prevent hospital readmissions? 8. How can Hospital-at-Home programs help patients have shorter hospital stays and improved quality of care? 9. What are PAMA and the IMPACT Act, and how can they help the care transitions process? 10. How can CMS’ final rule about discharge planning for patients in acute care settings, as well as involvement of caregivers in the care transitions process, benefit the Medicare beneficiary as well as the beneficiary’s caregivers and loved ones?

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C a s e S t u d y : C o o r d i n at i n g C a r e P o p u l at i o n s

for

Special

Reena Joseph, Tapan Mehta, James H. Rimmer, Charles L. Angel Jr., Jamie Wade, and Allyson Hall The term spinal cord injury (SCI) refers to any damage to the spinal cord or nerves within the spinal canal resulting in temporary or permanent loss of movement or feeling. SCIs may be acute, resulting from a traumatic event, or they may be the result of chronic degenerative disease. The average age at injury is 43. Falls are the most common cause of traumatic SCIs among individuals aged 65 or older. Less than 1 percent of SCI cases experience complete neurological recovery by the time of hospital discharge—which underscores the importance of proper rehabilitation. Treatment for patients with traumatic SCIs is highly complex and extremely expensive, and it requires coordination among various providers across the care continuum. Patients with SCIs face mobility limitations and long-term disability, are increasingly likely to develop secondary health complications, and have more frequent hospital emergency department (ED) visits and unplanned hospital readmissions. The movement of such patients across the rehabilitation continuum is further complicated by differences in the number of allowable rehabilitation visits under various insurance plans. In 2018, the average annual expenses (including healthcare costs and living expenses) associated with SCIs ranged from nearly $370,000 to $1,130,000 in the first year. In the same year, the indirect costs in terms of lost wages, benefits, and productivity averaged about $76,000 per patient. Healthcare providers are interested in changing the payment model used for SCIs. Value-based models tend to penalize hospitals and physicians if a patient is readmitted frequently or too soon after discharge. A new payment model, ideally, would balance the clinical needs of people with SCIs with adequate compensation for those who provide care for them. People with permanent SCIs may qualify as “permanently disabled” according to the Social Security Administration and become eligible for Medicare health insurance and Supplemental Security Income. CMS therefore has a financial interest in creating ACOs to provide effective, efficient care for people with disabilities.

R e g i o n a l A c a d e m i c H e a lth S y s t e m The Regional Academic Health System (RAHS) is a large academic health center in the midwestern United States that has been included in U.S. News and World Report’s rankings of the 100 best hospitals in America. Within RAHS is a dedicated rehabilitation facility called the Spencer Center. The Spencer Center is a hub for the Spinal Cord Injury Model System, a nationally recognized approach for providing multidisciplinary rehabilitation care, from emergency services through rehabilitation and reentry into full community life.

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The Spencer Center and RAHS work synergistically to care for patients in the period immediately following an SCI event. Services are typically covered by insurance; most are provided on a short-term basis. Once patients advance to a stable clinical condition or use up the amount of rehabilitation services covered by their insurance, they are responsible for paying for services out of pocket—even if the SCI causes them to lose their job (and job-related health insurance). New models of care for people with SCIs are being extensively researched nationwide. One such model involves an ACO structure, developed under the auspices of the CMS Center for Innovation. In an ACO, doctors and other providers come together to coordinate care and share financial risk for a defined population. Measures of patient medical expense and quality, in addition to shared structural risk between entities, determine whether the ACO makes or loses money. Shared-risk arrangements with CMS indicate the level of risk the ACO agrees to assume.

C o m m u n i t y R e h a b F o u n d at i o n The Community Rehab Foundation (CRF) is a not-for-profit organization dedicated to improving the lives of individuals with physical disabilities. It provides community-based sport, fitness, and therapeutic recreation programs, as well as advocacy, policy, and research activities. CRF serves more than 4,000 unique individuals every year. Payment for services comes from a variety of sources, including self-pay, third-party commercial insurance, select government programs, grants from foundations, donations, and any other source that CRF can tap. Like the Spencer Center, CRF is heavily involved in research for SCI models of care. It would likely benefit from working with the center to create an ACO.

C o l l a b o r at i o n Together, these organizations are interested in developing a care coordination and care transition program that will enable patients with traumatic SCIs to transition seamlessly from the acute care center back into the community, enhancing quality of care and reducing the incidence of hospital readmission. At present, however, no formal agreement exists between Spencer Center and CRF for the transfer of patients. Patients frequently go to CRF to meet their ongoing rehabilitation needs after their initial rehabilitation at Spencer Center is complete, and clients of CRF often go to RAHS if they experience acute medical problems. If a patient goes to the Spencer Center, the staff there are likely to know the staff at CRF. However, if a patient simply appears in the RAHS ED in the middle of the night, the staff on duty might not be aware of CRF and the additional resources it may be providing to the patient. Both the Spencer Center and CRF have their own clinical information systems (both use independently tailored versions of EPIC), financial contracts with third-party payers, and internal methods for care coordination.

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Care coordination across service providers is challenging and complex. To gain a better understanding of the issue, CRF tasked two interns with conducting a detailed review of best practices in care coordination and care transition programs for patients with traumatic SCIs. The review indicated that current programs included a number of discrete components—such as longer rehabilitation, vocational training, and the use of community resources—but that no comprehensive strategy had been developed for patient care transition between a major health system and a dedicated community-based organization. One major barrier to coordination across SCI-related service providers is that insurance coverage for patients with SCIs varies greatly from one payer to another. For instance, Medicaid coverage for SCIs varies from state to state, with some states providing extensive coverage (including attendant care, community support coordination, occupational therapy, physical therapy, and residential rehabilitation) and other states covering only a more restrictive list of services. Significant variation also exists in the rehabilitation benefits provided by private insurance plans, such as allowed days of coverage for inpatient and outpatient rehabilitation, assignment of a designated case manager, and annual or lifetime limits on number of days of rehabilitation. Formal collaboration between the RAHS Spencer Center and CRF would likely help both organizations as well as their clients with SCIs. Managing people with SCIs as a population might allow for bundling services and spreading risk across everyone in the population, rather than paying for each individual client with unique service use. However, determining how to structure the collaboration to mutually benefit the two organizations and determining what processes will be used, by whom, and when require considerable planning and commitment of resources from the organizations’ governing boards. Executives of the Spencer Center and CRF conducted a survey of patients and families to generate useful information with which to establish a rationale and priorities for creating a comprehensive and unified service path. These executives also have created a task force to start the process of collaboration and to explore the possibility of forming an ACO. They outline the following priorities for the task force: • Develop a conceptual framework that depicts movement of the SCI patient across the care continuum, from injury to reintegration back into the community. • Propose organizational processes and procedures that both the Spencer Center and CRF can employ to achieve seamless transition of SCI patients back into the community. • Identify key stakeholders in this process, along with the role(s) that each stakeholder would play. • Build a business case for the collaboration, such that the services from both organizations can be billed to the patient’s insurer and the RAHS Spencer Center can participate in value-based payment systems appropriate for the management of populations needing rehabilitation.

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Restore

Improve

Residential Rehab Acute Care Point of Injury UAB Medicine

Inpatient Rehab Rehabilitation services provided by therapists at Spain Rehabilitation Center

Rehabilitation services continue to build on an established plan of care by therapists. Lakeshore health coaches/trainers are introduced for condition-specific exercise and wellness training. Patient lodges in LF cottages with caregivers for extensive training.

Prevent

Outpatient Rehab Rehabilitation services provided by a combination of therapists and trainers and builds on the established plan of care.

Patient

Community/Home The patient has transitioned into a participant of lifetime wellness. Services and support provided by trainers, telehealth coaches and community providers.

91

EXHIBIT 3.2 Vision for the Spinal Cord Injury Continuum of Care

Check In/Tune Up The participant is actively engaged in lifetime wellness with support from community providers and NCHPAD.

Participant

The CEOs would like this work to be completed within three to six months, and they each are considering the next steps to get this process under way. First, they need to create the vision that will lead to the “elevator speech” to sell their organizations’ governing bodies on the merits of the project. To provide a starting point, CRF has offered a graphic display of its vision of a continuum of care for people needing rehabilitation (exhibit 3.2).

Case Study Questions 1. How, if at all, would an ACO model help people with spinal cord injuries? 2. What measures of quality of care, as used by CMS, apply to the care of people with SCIs? 3. What challenges do clients with rehabilitation needs face in accessing the full set of services that would benefit them? 4. Compare the way the Spencer Center and CRF interact now with the way they would interact if a more formal arrangement for collaboration were in place. What basic parameters would be essential to a formal collaboration? 5. Is an ACO framework consistent with CRF’s vision of a continuum of care? How could an ACO facilitate or impede implementation of the vision? Source: Case study adapted from Evashwick and Turner (2020).

References AHC Media. 2011. “To Succeed, Hospitals Improve Transitions of Care.” Hospital Case Management. Published October 1. www.ahcmedia.com/articles/132188-to-➤ succeed-hospitals-improve-transitions-of-care.

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Alley, D. E., C. N. Asomugha, P. H. Conway, and D. M. Sanghavi. 2016. “Accountable Health Communities—Addressing Social Needs through Medicare and Medicaid.” New England Journal of Medicine 374 (1): 8–11 doi:10.1056/NEJMp1512532. Alliance for Home Health Quality and Innovation. 2014. Improving Care Transitions Between Hospital and Home Health: A Home Health Model of Care Transitions. Published January. https://researchinstituteforhomecare.org/wp-content/uploads/2022/05/AHHQI_Care_ Transitions_Tools_Kit_r011314.pdf. American Health Care Association. 2022. “SNF Value-Based Purchasing.” Accessed June 4. www.ahcancal.org/facility_operations/Pages/SNF-Value-Based-Purchasing.aspx. American Hospital Association. 2019. Fact Sheet: Post-Acute Care. Published July. www.aha. org/system/files/media/file/2019/07/fact-sheet-post-acute-care-0719.pdf. ———. 2010. “Maximizing the Value of Post-Acute Care.” TrendWatch. Published ­November 30. www.aha.org/system/files/research/reports/tw/10nov-tw-postacute.pdf. Anderson, G. 2010. “Chronic Care: Making the Case for Ongoing Care.” Robert Wood Johnson Foundation. Published January 1. www.rwjf.org/en/library/research/2010/01/ chronic-care.html. Balentine, C. J., G. Leverson, D. J. Banness, S. Knight, J. Turan, C. J. Brown, H. Chen, and S. Bhatia. 2018. “Selecting Post-Acute Care Settings After Abdominal Surgery: Are We Getting It Right?” American Journal of Surgery 216 (2): 260–66. Balentine, C. J., P. A. Richardson, M. C. Mason, A. D. Naik, D. H. Berger, and D. A. Anaya. 2017. “Postacute Care and Recovery After Cancer Surgery: Still a Long Way to Go.” Annals of Surgery 265 (5): 993–99. Behery, O. A., S. Kouk, K. K. Chen, K. A. Mullaly, J. A. Bosco, J. D. Slover, R. Iorio, and R. Schwarzkopf. 2018. “Skilled Nursing Facility Partnerships May Decrease 90-Day Cost in a Total Joint Arthroplasty Episode Under the Bundled Payments for Care Improvement Initiative.” Journal of Arthroplasty 22 (2018): 639–42.

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———. 2021b. “Hospital Readmissions Reduction Program (HRRP).” Modified December 1. www.cms.gov/Medicare/Medicare-Fee-for-Service-Payment/AcuteInpatientPPS/ Readmissions-Reduction-Program. ———. 2021c. “IMPACT Act of 2014 Data Standardization & Cross Setting Measures.” Modified December 1. www.cms.gov/Medicare/Quality-Initiatives-PatientAssessment-Instruments/Post-Acute-Care-Quality-Initiatives/IMPACT-Act-of-2014/ IMPACT-Act-of-2014-Data-Standardization-and-Cross-Setting-Measures. ———. 2019a. “Chronic Conditions Charts: 2017.” Accessed November 21. www. cms.gov/Research-Statistics-Data-and-Systems/Statistics-Trends-and-Reports/ Chronic-Conditions/Chartbook_Charts. ———. 2019b. “CMS’ Discharge Planning Rule Supports Interoperability and Patient Preferences.” Press release, September 26. www.cms.gov/newsroom/press-releases/ cms-discharge-planning-rule-supports-interoperability-and-patient-preferences. ———. 2019c. Your Discharge Planning Checklist. CMS Product No. 11376. Revised March. www.medicare.gov/Pubs/pdf/11376-discharge-planning-checklist.pdf. ———. 2015. “Discharge Planning Proposed Rule Focuses on Patient Preferences.” Press release, October 29. www.cms.gov/newsroom/press-releases/ discharge-planning-proposed-rule-focuses-patient-preferences. Charles, L., L. Jensen, J. M. I. Torti, J. Parmar, B. Dobbs, and P. G. J. Tian. 2020. “Improving Transitions from Acute Care to Home Among Complex Older Adults Using the LACE Index and Care Coordination.” BMJ Open Quality 9 (2): 1–6. http://dx.doi.org/10.1136/ bmjoq-2019-000814. Cho, J., J. L. Thorud, S. Marishak-Simon, L. Frawley, and A. B. Stevens. 2015. “A Model HomeDelivered Meals Program to Support Transitions from Hospital to Home.” Journal of Nutrition in Gerontology and Geriatrics 34 (2): 207–17. Coleman, E. A., C. Parry, S. Chalmers, and S. J. Min. 2006. “The Care Transitions Intervention: Results of a Randomized Controlled Trial.” Archives of Internal Medicine 166 (17): 1822–28. https://doi.org/10.1001/archinte.166.17.1822. Copying and distribution of this PDF is prohibited without written permission. For permission, please contact Copyright Clearance Center at www.copyright.com.

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CHAPTER 4

RESIDENTIAL SETTINGS FOR LONG-TERM CARE SERVICES Jenny Inker, PhD, LALFA, Jennifer Pryor, MS, LALFA, and Mary Helen McSweeney-Feld, PhD

Learning Objectives After completing this chapter, you should be able to ➤➤ define the terms independent living, assisted living, skilled nursing facility, and life plan communities; ➤➤ describe the history and development of residential long-term care settings in the United States; ➤➤ explain the types of long-term care services delivered in residential settings; ➤➤ describe the impact of person-centered care and culture change initiatives in residential care settings; ➤➤ compare residential care settings in the United States with those in other countries; and ➤➤ discuss new developments for the provision of residential long-term care services after COVID-19.

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The term residential care is used to describe a variety of long-term care services typically provided to individuals within a specific housing setting. The three primary industry segments are (1) independent living and congregate care communities, (2) assisted living facilities, and (3) skilled nursing facilities. These three segments are ordered from the one with the least amount of supports and regulation to the one most supportive and regulated. A fourth industry segment is the life plan community (also known as continuing care retirement community, or CCRC), which integrates aspects of the three other segments, typically on one campus or in one geographic area. Though some of these residential options have distinct service components, the lines between skilled nursing facilities and less intensive residential alternatives are blurring. The history of residential long-term care options started around the turn of the twentieth century when almshouses for the poor evolved into nursing homes for those needing skilled care. The regulatory structure for nursing homes evolved from the 1950s and through the 1960s with the introduction of the Federal Medicare and Medicaid programs. Assisted living and other innovative care and lifestyle models emerged throughout the 1970s and 1980s, continuing into the twenty-first century with value-based payment models emphasizing quality and safety for residents. Exhibit 4.1 provides a timeline of the highlights of this rich history of residential care services in the United States.

I n d e pe n d e n t L i v i n g The term independent living covers a broad range of settings in which individuals, as a matter of preference and lifestyle, move into active adult communities or congregate housing arrangements that may impose age restrictions, offer social activities, and usually provide increased security. The target age for these residences is 50 or older. Typically, no healthcare services are offered as part of the residential contract, although individuals may be able to pay for outside assistance as necessary. The size of these arrangements varies: They can be a single high-rise apartment building or townhouse condominium development, or they can make up entire city settings. Sun City, Arizona, for instance, is an independent living community of more than 40,000 individuals that features large recreational facilities and a wide range of activities (Brinson 2020). Other independent living arrangements include less structured community options. In some of these cases, individuals seeking services pay a fee for access; in others, local governments subsidize the provision of supportive services. H i s t o ry

of

independent living A category of housing options, such as adult communities and congregate housing arrangements, for individuals who are able to live without assistance. These residences often impose age restrictions and may offer social activities, supportive services, and increased security.

Independent Living

Independent living in the United States has its historical roots in two events: the public housing movement of the 1930s and the development of age-segregated communities in Arizona in the 1950s. The foundation for independent living arrangements within public housing was first developed during the New Deal era with the passage of the National

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Late 1800s: Retirement communities started by notfor-profits and religious organizations

CH04.indd 104 1935: Social Security Act funding for state older adult assistance: retirement homes and adult foster care homes start

1950

1959: Section 202 Housing for Older Adults starts

1950: Amendments to Social Security Act require states to develop nursing home regulations

1974: HUD Section 8 Housing starts

1970

1981: Assisted living starts in Oregon; Sunrise Senior Living starts in Virginia

1991: First cohousing community opens in Davis, California

1990

1987: OBRA 87– Federal Long-Term Care Survey and Medicare Requirements of Participation for nursing homes begin

1985: NORCs start in NYC

1981: Home and CommunityBased Services waiver starts

1971: Miller Amendment to Social Security Act creates intermediate care facilities

1965: Housing and Urban Development Act; HUD created as a cabinet-level office

1983: John Erickson starts moderateincome CCRC model in Catonsville, Maryland

2010

2022: OSHA COVID-19 Focused Inspection Initiative in Healthcare begins

2020

2020: CMS COVID-19 Nursing Home Guidance and Actions begin

2016: New Medicare Conditions of Participation for Nursing Homes go into effect

2010: ACA passed; Nursing Home Transparency and Improvement Act of 2009 enacted

2006: NORC demonstration under OAA reauthorization begins

2001: Assisted Living Workgroup creates quality standards for assisted living

2000

2002: CMS starts Nursing Home Quality Initiative

2002: Beacon Hill Village opens in Boston

EXHIBIT 4.1 Residential Care Services in the United States: Highlights

1930

1934: National Housing Act: start of public housing

1949: American Housing Act: start of affordable housing movement

1965: Moss Committee hearings on nursing home regulations begin

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Housing Act of 1934. City slums were demolished, public housing authorities were established, and waves of public housing were built in all large US cities. From Public Housing to Housing Plus Services

The movement resumed during the administration of President Harry S. Truman with the American Housing Act of 1949, which set off a second wave of public housing construction. As adults aged 65 or older with lower incomes became eligible for public housing during the 1950s, projects began to provide for the needs of the active senior. In 1959, the federal Section 202 program created a specialized housing program for older adults and people living with disabilities. Many of these housing projects were built for ambulatory, independent older adults and included features such as emergency call buttons and grab bars. Under Section 202, rent subsidies are offered to low-income residents, and interest-free funding is available to private or nonprofit organizations that build apartment dwellings for older adults in close proximity to other long-term care residences. The program has been shown to be a cost-effective alternative to moving older adults into institutional settings before they need that level of services (Haley and Grey 2008). In 1970, President Richard Nixon signed a federal housing initiative called Section 8. This program has two components: (1) project-based vouchers given to landlords who have reserved a portion of existing, newly constructed, or rehabilitated housing to low-income (Section 8) renters; and (2) housing-choice vouchers given to individuals (older, disabled, and low-income) to use in renting a place that they select. The housing-choice vouchers empower those under the program to live outside housing projects. Many older adults have chosen to live independently in the community once they are able to obtain a unit in affordable housing. To support these individuals, some states have created housing plus services programs that offer supportive services and supports to residents of affordable housing communities, many of whom may be eligible for both Medicare and Medicaid (dually eligible, as discussed in chapter 2). These programs may include on-site service coordinators and nurse wellness coordinators who can address residents’ healthcare and social services needs, such as nutrition and transportation to doctor appointments. Service coordinators at affordable housing complexes have been found to lower hospital stays by 18 percent among older adults living in federally subsidized housing complexes in 12 regions of the United States (Sanders et al. 2015).

housing plus services programs Programs that offer healthcare and social services and supports through on-site service coordinators or nurse coordinators at federally subsidized housing complexes for older adults.

Retirement Communities

At the same time that the public housing market for older adults was growing out of New Deal programs, the passage of the Social Security Act in 1935 was helping breed a new category of people—retirees. Retirement was an evolving concept, and it led to a novel

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age-segregated communities Housing, frequently gated, that restricts ownership of units to individuals who have reached a certain age, such as age 50 or 55, in order to provide a living area without children around. Sometimes called age-restricted communities.

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idea: communities where active older adults could enjoy a full life without the obligations of children and work. These age-segregated communities, where older adults live with their peers, grew in popularity. Though religious and fraternal organizations had created retirement communities as early as the 1920s, the first age-segregated community—Youngtown, Arizona—was created in 1954 by Benjamin Schleifer. One of Schleifer’s main objectives was to ensure that Youngtown’s residents could afford to live with dignity, even if their sole income came from Social Security benefits (Blechman 2008). Because only older adults lived in these communities, they did not need to raise tax dollars for schools. This concept attracted the attention of real estate developer Del Webb. Webb conducted market research that suggested that retirees would welcome the opportunity to distance themselves from their offspring and that high on their priority list were good weather and something to do (Blechman 2008). He opened Sun City, Arizona, on New Year’s Day in 1960, and sold 2,000 homes by the year’s end. Webb was heralded by Time magazine as the man who put “active” into retirement (Blechman 2008, 32). By 1977, Sun City had become Arizona’s seventh largest community, with 40,000 inhabitants (Blechman 2008). Webb’s company eventually committed all its resources to building retirement communities. Sun City also became a model for other age-segregated communities in California, Florida, Texas, the Carolinas, and other states. New Developments

naturally occurring retirement communities (NORCs) Communities with a large proportion of older persons residing within a specific geographic area. NORCs frequently offer supportive service programs administered under the US Administration on Aging.

in

Independent Living

The concept of independent living communities has evolved into numerous communitybased models, such as naturally occurring retirement communities, planned virtual retirement communities, and cohousing communities. Naturally occurring retirement communities (NORCs) are locales (e.g., neighborhoods, districts) in which more than 50 percent of the population is made up of older adults. Even a building filled with elders can be considered a NORC. These communities are called “naturally occurring” because they were not initially designated to be areas for older individuals; rather, they turned this way as a result of residents aging in the homes they occupied for many years or older adults moving into the area. NORCs were officially recognized beginning in 1985, when the United Jewish Communities in New York City developed a supportive services model for such communities. Eventually, a new federal program, Community Innovations for Aging in Place, was created by the 2006 reauthorization of the Older Americans Act. Under this program, more than 45 communities in 26 states received demonstration grant funding for NORCs. The NORC supportive services programs are designed to prevent service fragmentation and create healthy, integrated communities in which older adults can age in place. These programs fund social workers and healthcare workers and may involve ancillary services

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ranging from adult day care and transportation to a variety of supportive services (Office of Policy Development and Research 2013). Planned virtual retirement communities (PVRCs), sometimes referred to as villages, are self-help groups that link older adults with community services to enable them to age in place successfully. Examples of successful PVRCs are the Community Without Walls in Princeton, New Jersey; Beacon Hill Village in Boston; and Capitol Hill Village in Washington, DC. PVRCs charge their members a nominal fee in exchange for resource information or small services, such as dog walking, meal preparation, or picture hanging (Gleckman 2009). A cohousing community is a collaborative place in which residents actively participate in the design and operation of their own neighborhood. The cohousing idea originated in Denmark and was promoted in the 1980s by the architects Kathryn McCamant and Charles Durett. Community members often eat meals together and collectively decide how to allocate resources within the community. The communities may be intergenerational or may be specific to older adults. Many communities are organized as clusters of housing units, mostly purchased by their owners (who also pay monthly maintenance fees), with a layout intended to encourage walking and socialization, and with a common house as the center of the community where optional meals are shared and other activities take place. They may be organized around themes of sustainability or shared resources (Cohousing Association of the United States 2021). A congregate care facility offers social activities, security, and certain homemaking services for a target population typically aged 75–82. The facility’s focus is to provide companionship, organized activities, and, in the event of a health-related event, some temporary personal care. Congregate care facilities typically assist residents with instrumental activities of daily living, such as preparing meals, doing housework, shopping, and going to healthcare appointments. The facilities are typically regulated by the state agency responsible for supervision of healthcare services. They are known across the United States by a variety of names, such as adult foster care, board and care homes, congregate care homes, personal care homes, and enriched housing. A group home, or community care facility, is for individuals with intellectual or developmental disabilities who would otherwise need institutional care. Such homes are typically licensed by states but privately owned and operated, and they may be forprofit or not-for-profit. Owners are given public funding to provide housing, meals, and services to people living with disabilities, in accordance with assessment and care plans based on level of need, and residents are not charged for these services. Staff are hired by the homeowners, and activities are provided according to a predictable schedule. Alternative models to group homes for older adults include supported living, in which services are provided to individuals living in the community (see the related “Did You Know?” sidebar featuring Sweetwater Spectrum); supervised living, which provides daily

107

planned virtual retirement communities (PVRCs) Communities in which older adults live in their own homes but receive information and services to help them remain independent. cohousing community A type of collaborative community designed and operated by the residents. The community may be multigenerational or exclusively for people aged 55 or older. congregate care facility A facility typically designed for people aged 75–82 that offers social activities and homemaker services such as meals, housekeeping services, and transportation. The facility also provides assistance with instrumental activities of daily living. group home A publicly funded facility that provides housing, meals, and services for individuals with intellectual or developmental disabilities who would otherwise need institutional care. Also called a community care facility.

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DID YOU KNOW? A Supportive Living Community: Sweetwater Spectrum

Sweetwater Spectrum in Sonoma, California, was created as

schedules of activities and a dedicated staff for people living in small housing units; and specialized living, whereby individuals live on working farms or with a married couple providing services (Goehner 2021).

an alternative to group home residences for adults with autism. Unlike group homes that are owned by states and deliver state-funded services to people with disabilities, Sweetwater Spectrum allows residents to rent their supportive housing

I n d e p e n d e n t L i v i n g : S e t t i n g s , C li e n t s , O w n e r s hi p , a n d F i n a n ci n g

The characteristics of independent living are highly varied, as shown in exhibit 4.2. They range ticipate in a large range of activities, and are free to come and from high-end communities for the affluent— go from the property subject to the rules of the community. some of which have age restrictions and require The community was designed to minimize visual stimulation, the residents to purchase their living units—to ambient sound, lighting, and odors by using simple, predictgroup housing arrangements or governmentable spaces for living and activities. If residents need supportsubsidized options. Some independent living ive services, they can request them from a supportive living residents have substantial financial assets and seek services regional center, which is approved and paid for by socialization or the security of living in a supportthe state Department of Developmental Services. Sweetwater ive community. Other residents have fewer assets. Spectrum emphasizes the power of community in supporting Many clients of subsidized housing options are adults with autism so they can live independent, productive, older, widowed women in their late 70s and 80s and fulfilling lives—an important concept for families conwith limited income. cerned about where their loved ones will live as they get older With the aging of the US population (Sweetwater Spectrum 2022). and the growing number of younger adults living with disabilities, the need for independent living options may rapidly increase. Like the communities and clients themselves, the owners and operators of independent living communities have a wide financial range. Some are for-profit senior living companies that cater to the needs of the affluent, while others are not-for-profit entities or municipalities that seek to serve older adults who have limited financial means. Consequently, the fees for living in these communities vary greatly. Wealthier older adults typically pay for these living arrangements themselves (especially for services in higher-end independent living complexes), while residents of subsidized older-adult apartment complexes rely on government assistance. Individuals who reside in the community and are members of living community networks may pay a membership fee for access to services, or their membership may be subsidized by their community, which is the case with NORCs. unit and choose their housemates, subject to their landlord’s

approval. Residents plan and prepare their own meals, par-

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Settings

High-end, diverse living complexes with multiple services/socialization opportunities Apartment complexes with basic services Service networks supported by members or government programs

Clients

Affluent older adults with financial resources Lower-income seniors with limited resources

Ownership

For-profit senior housing or hospitality companies Not-for-profit, faith-based, or local communities

Financing

Rental or unit purchase with monthly maintenance; out-of-pocket payments Subsidized monthly rates based on means-testing and federal government program guidelines Membership fees, sometimes subsidized by government programs

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EXHIBIT 4.2 Independent Living: Settings, Clients, Ownership, and Financing

CURRENT ISSUE Specialized Long-Term Care Services for Veterans

A new development in long-term care services for veterans has been the provision of adult family homes, or adult medical foster care homes. Adult family homes are private homes where six or fewer residents can rent rooms and receive services from a trained caregiver 24 hours a day, 7 days a week. The US Department of Veterans Affairs will not pay for the rental of the room but will pay for the cost of caregiver services as long as the veteran is signed up for primary care with the Veterans Administration, as well as extra services needed, such as visits from a nurse. Veterans and their families have had positive experiences with such homes, which can provide peace of mind for loved ones

assisted living

and a homelike environment in which veterans can live (US Department of Veterans

facilities (ALFs)

Affairs 2020).

Communities in which staff help residents with the activities of daily living, coordinate

A s s is t e d L i v i n g F acili t i e s The phrase assisted living has no uniform definition in the United States, because each state uses different terminology and determines the standards and arrangements for its local assisted living facilities (ALFs). In some states ALFs may be known as residential care facilities or personal care homes. In general, however, assisted living provides

services from outside providers, and monitor activities to help ensure residents’ health, safety, and well-being.

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hospitality model The attitude, behavior, and standards enabling a community to provide exceptional service and positive experiences to residents of long-term care communities.

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support to individuals who may be experiencing various functional limitations in an environment where they play an active role in managing their day-to-day life. Many assisted living communities are known for their hospitality model of service provision, which encourages the resident to remain independent in a supportive environment that offers an array of services and positive experiences like those of a hotel or resort (Kramer 2022). Services offered in an ALF typically include the following: ◆◆ Help with activities of daily living (e.g., eating, bathing, toileting, getting around) and other personal care services ◆◆ Around-the-clock supervision or monitoring while maintaining residents’ privacy ◆◆ Organized social and wellness activities in a safe and controlled environment ◆◆ Prepared meals, laundry service, transportation, healthcare services, and referrals to medical and health information and resources H i s t o ry

of

Assisted Living

Assisted living was introduced in the United States in the 1970s. It was viewed as an alternative to nursing homes for consumers who needed some personal care services but not 24/7 medical care. Keren Brown Wilson, who began an assisted living program in Oregon, and Paul Klaussen, who started Sunrise Senior Living on the East Coast, were pioneers of homelike communities that offered a noninstitutional alternative to nursing homes. Prior to the advent of the assisted living industry, these types of residential communities were known by a variety of names, such as board and care homes, retirement homes, or rest homes, which offered very basic services—often simply room and board. By the late 1980s, however, many of these residential communities developed into those which began to offer more personal care services than before, becoming what is commonly termed assisted living today (Wilson 2007). Two distinct stages mark the development of assisted living. The first stage was characterized by pioneering efforts to create a new kind of service whereby the physical plant, service delivery model, and approach to staffing supported the ideas of privacy, dignity, and consumer choice (Redfoot 2008). The work pioneered by Wilson on the West Coast and Klaussen on the East Coast shared a similar philosophical foundation for care, but these movements differed in their approaches to service capacity, in large part because of unique state policy requirements for residential care resulting in slightly different versions of assisted living communities on each coast (Wilson 2007). Policy discussion during this

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stage attempted to distinguish assisted living from other choices, such as skilled nursing homes or board and care homes. The second stage took the principles from the first stage and made them a primary driver of culture change in long-term care, resulting in more private rooms, residential living environments, greater choice of services (especially for residents living with disabilities), and staffing models that enhance the role of direct care workers (Redfoot 2008). As this model of care grew and developed rapidly in the 1990s, a large influx of assisted living providers pressured state governments to make decisions about how and to what extent these types of communities should be regulated. Not long after this boom in the industry, concerns about quality became the subject of public scrutiny (Wilson 2007). In 2001, the Assisted Living Workgroup, a consortium of nearly 50 national organizations representing all aspects of assisted living, came together to develop consensus recommendations to improve the quality of assisted living. The group’s activities concluded in 2003 with a list of 110 recommendations presented before the US Senate Special Committee on Aging. Despite these consensus recommendations, states continue to regulate assisted living facilities with a variety of definitions and standards. Today, the assisted living industry continues to evolve due to changes in demand, innovations in technologies, consumer access to information, and the ability of the industry to meet the complex needs of those seeking their services. Recent trends have suggested that older and frailer individuals are increasingly making the move into assisted living. This influx of individuals continues to place pressure on state governments and providers to ensure that appropriate oversight is in place to maintain safety, welfare, and high quality of life for all individuals living in ALFs (Harris Kojetin et al. 2019). T h e P hil o s o p h y

of

Assisted Living

Many executives and providers of ALFs emphasize that assisted living is not an institution or a stopping point on a continuum but rather a philosophy of care. It is residentcentered and homelike, and it maximizes autonomy and independence for its residents (Argentum 2018). The following are some common themes in assisted living: ◆◆ Individuals are referred to as residents or clients. ◆◆ Residents (along with their family) make the choice to move into and out of the community. ◆◆ The building itself is viewed as a community.

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◆◆ Rooms or suites are viewed as stand-alone apartments or condominium units that cannot be accessed without permission from or knowledge of the resident, except for emergency purposes. ◆◆ Meal choices are varied, with specialized meals for residents needing particular textures for nutrition, and many properties offer a “happy hour” for residents with limited alcoholic beverage service. ◆◆ Services are amenities offered to residents as part of a service plan, not as part of a treatment plan. Assisted living communities have traditionally used a hospitality model for service provision that emphasizes the independence of residents in their living arrangements. After the COVID-19 pandemic began, many ALFs started to incorporate health and wellness activities into their services to ensure the safety of residents moving into their communities (Bonvissuto 2022).

A s s i s t e d L i v i n g : S e t t i n g s , C li e n t s , O w n e r s hi p ,

and

F i n a n ci n g

In 2020, the United States had a total of 28,900 assisted living communities, with nearly 1 million licensed beds; the average size of an assisted living community is 33 licensed beds (National Center for Assisted Living 2021). Exhibit 4.3 shows the main features of assisted living. EXHIBIT 4.3 Assisted Living: Settings, Clients, Ownership, and Financing

Settings

High-end complexes, may be freestanding or part of a continuing care community Apartment complexes with assistive services provided on-site

Clients

Affluent older adults with financial resources Lower-income seniors with limited resources

Ownership

For-profit senior housing or hospitality companies For-profit mom-and-pop owners or entrepreneurs Not-for-profit, faith-based, or government-run communities

Financing

Rental or unit purchase with monthly maintenance; out-of-pocket payments Subsidized monthly rates based on means testing and federal government program guidelines (varies by state)

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The target clientele for assisted living is individuals aged 18 or older with limited functionality, although the majority of residents are adults aged 65 or older; however, the reality of resident demographics is much more complex. ALF residents come from all income levels (from the wealthy to recipients of federal subsidies) and have all types of medical and healthcare conditions (from knee problems to stroke-related complications). The acuity of residents in assisted living residences has grown in recent years. Many communities now provide specialized services such as memory care for residents living with dementia or Alzheimer’s disease; hospice and end-of-life care; and care for younger residents living with disabilities. The ability of ALFs to enter these emerging markets depends on state standards for licensure for these communities. Costs for assisted living vary widely across states and regions. The annual median cost of ALFs in the United States is $54,000, and the national median monthly rate for an ALF room is $4,500 (Genworth 2022). In some ALFs, the monthly fee pays for all services rendered to the resident, but other ALFs operate under an à la carte model, whereby separate charges for specialized services are added to the base fee. Residents typically pay for assisted living services out of pocket, but a growing number of people are using long-term care insurance or managed care insurance. The majority of state Medicaid programs offer reimbursement for a limited number of assisted living services (Argentum 2018).

S kille d N u r si n g F acili t i e s In 2016, the United States had an estimated 15,600 skilled nursing facilities with 1.7 million licensed beds and an estimated 1.3 million residents, as reported by the Centers for Disease Control and Prevention (CDC 2022). A skilled nursing facility (SNF), also called a nursing home, provides custodial supervision and care, covering both shortstay rehabilitation and long-stay skilled nursing, including specialized post-acute care and end-of-life services. The focus of SNF services is different from a hospital’s focus on acute care episodes and surgical procedures; the SNF approach aims for restoration of an individual’s functioning so she is able to return to the community if that option is possible. Nursing home care revolves around chronic health conditions with no cure. Though nursing care is the primary service, many SNFs have diversified. Some have added special care units for younger residents or individuals living with Alzheimer’s disease, AIDS, or brain injury; who use ventilators; who need bariatric care; or who need hospice and end-of-life care. Under the Affordable Care Act (ACA), SNFs have become key post-acute care service partners for acute care hospitals and health systems subject to bundled payments from Medicare for such procedures as joint replacements, cardiac services, and stroke care.

skilled nursing facility (SNF) A facility, often called a nursing home, that provides medical, nursing, or rehabilitative services on a residential basis.

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CRITICAL CONCEPT Nursing Homes by the Numbers

A 2019 report on long-term care services found that 38.6 percent of nursing home residents are aged 85 or older, and 25.5 percent are between the ages of 75 and 84. The majority of nursing home residents were classified as non-Hispanic white (75.1 percent); 14.3 percent were non-Hispanic Black, 5.4 percent Hispanic, and 5.1 percent “non-Hispanic other” (Harris-Kojetin et al. 2019, 21). The same report found that 47.8 percent of all nursing home residents are living with Alzheimer’s disease or some other form of dementia, and 46.3 percent are living with depression. More than 80 percent of nursing home residents required assistance with bathing, dressing, toileting, and transferring from bed to chair, and approximately 14.4 percent had overnight hospital stays (Harris-Kojetin et al. 2019).

H i s t o ry

of

Nursing Homes

At the turn of the twentieth century, communities in the United States sent older adults and impoverished citizens to almshouses to get care. Almshouses were charitable houses established to take care of older adults, and the conditions were often deplorable. The Social Security Act, passed in 1935, provided matching funds to states for assistance to older workers; this program led to the development of private homes in which older adults could reside and collect these payments. In the 1950s, amendments to the Social Security Act required states to establish a system of licensing for nursing homes, and federal funding was made available for building nursing homes. Regulations required that nursing homes follow a medical model of care, which sped the evolution of the industry from a welfare system to its current health-related system. Nursing homes have long struggled with quality issues, and the federal government has historically used financial incentives to encourage compliance with quality regulations. The creation of Medicare and Medicaid in 1965 led to federal government payments for nursing home expenses. However, by the end of the 1960s, many facilities failed to comply with government regulations. As a result, in April 1969, the US Department of Health and Human Services issued Intermediary Letter 371, which substantially reduced Medicare and Medicaid payments for nursing home services. Nursing homes continued to have problems complying with federal regulations. In 1971, the Miller Amendment to the Social Security Act enabled the creation of intermediate

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care facilities that provided less nursing care but still qualified for government reimbursement. In 1972, Public Law 92-603 allowed the Medicaid program to pay nursing homes on a reasonable cost basis. The expectation was that the law would encourage SNFs to improve their quality because providers would be reimbursed equitably for the care they delivered. However, by the 1980s, long-term care facilities were plagued by reports of abuse and scandal, and an Institute of Medicine (IOM 1986) report titled Improving the Quality of Care in Nursing Homes concluded that quality of life should be as important as quality of care. The report led to the passage of the Omnibus Budget Reconciliation Act (OBRA) of 1987, which instituted a top-to-bottom revision of SNF regulations, including the first version of the Federal Long-Term Care Survey, which introduced the F-tag system for grading various dimensions of quality of care and services and the first Minimum Data Set (MDS) assessment tool for nursing home residents. OBRA 1987 also allowed the creation of new services, such as subacute care. Passage of the Health Insurance Portability and Accountability Act of 1996 expanded federal fraud and abuse law in the Medicare and Medicaid systems, but concerns over the quality of nursing home care continued. In 2002, the Centers for Medicare & Medicaid Services (CMS) introduced the Nursing Home Quality Initiative (NHQI). This program established the MDS for use in calculating reimbursement of nursing home services; identified quality measures; and created the CMS Nursing Home Compare website (now called Care Compare), where the public can view results from the NHQI (CMS 2022; Medicare.gov 2022). In 2008, CMS introduced a five-star rating system on Nursing Home Compare to allow consumers to distinguish high-performing facilities (five stars) from low-end performers (one star). SNFs are graded on the basis of various measures, such as staffing, health inspection rating, and performance on quality standards. However, the comparison feature is somewhat limited: It can only be used to compare facilities within a state, not across states (because of differences in health inspection regulations from state to state), and many of the measures used, such as staffing and quality, are self-reported by the facilities. The five-star system was revised in 2015, and CMS announced the implementation of new federal surveys to monitor quality in 2016. The changes to the F-tags included a clear focus on person-centered care, culture change, elder abuse, neglect, and exploitation. (MDS requirements are discussed further in chapter 14.) Furthermore, nursing homes were required to have a Quality Assessment and Performance Improvement plan in place (as discussed in chapter 16). The Nursing Home Value-Based Purchasing Demonstration, another CMS qualitymonitoring initiative, assesses how well SNFs are performing against established quality standards. Facilities that show the best or most improved performance are awarded incentive payments (CMS 2021). CMS has also piloted other initiatives for nursing homes, such as specialized surveys for dementia care, staffing, and quality and performance improvement.

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To receive payments from Medicare and Medicaid, CMS requires nursing homes to be certified. In 2015, CMS announced major revisions in the Medicare Conditions of Participation for Nursing Homes, including new staffing and reporting requirements. The Joint Commission, a major accreditation organization for hospitals and other healthcare organizations, also offers Nursing Care Certification for SNFs within its Home Care accreditation program (Joint Commission 2022b). The Joint Commission has deemed status—that is, recognition by CMS as having accreditation standards that meet or exceed Medicare requirements and a survey process comparable to Medicare’s (Joint Commission 2022a). The Commission on Accreditation of Rehabilitation Facilities (CARF) also has an accreditation program, though CMS does not recognize CARF accreditation as a replacement for its own certification process. Other organizations, such as Planetree, an internationally recognized leader in patient-centered care, offer designations for nursing homes for resident-focused care initiatives. S k ill e d N u r s i n g F a cili t i e s : S e t t i n g s , C li e n t s , O w n e r s hi p , a n d F i n a n ci n g

The United States had an estimated 15,600 nursing homes in 2016, and those facilities provided 1.7 million certified beds for an estimated 1.3 million residents (CDC 2022). Exhibit 4.4 provides an overview of nursing home characteristics. EXHIBIT 4.4 Skilled Nursing Facilities: Settings, Clients, Ownership, and Financing

Settings

Facilities, either freestanding, part of a senior living corporation, or part of a continuing care community/life plan community. Diversified offerings, including short- and long-stay services

Clients

Affluent older adults with financial resources Younger individuals who need short-stay rehabilitation care Individuals who need specialty nursing care Lower-income seniors who need intensive nursing care

Ownership

For-profit senior housing or hospitality companies For-profit “mom-and-pop” owners or entrepreneurs Not-for-profit, faith-based, or government organizations

Financing

Out-of-pocket payments, managed care insurance, and long-term care insurance payments Federal Medicare payments (for short-stay rehabilitation services), state Medicaid or other government program payments for residents who meet means-testing guidelines

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Developments

in

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S k ill e d N u r s i n g F a cili t y S e r v ic e s

Developments in SNF services began in the late twentieth century and have continued, including care transition services as well as person-centered care and culture change initiatives, as discussed in the sections that follow. Care Transition Services

A transitional care unit (TCU) assists with the transition of individuals who have been discharged from hospital-based, acute care settings. A TCU may be part of a hospital or nursing home, and it offers nursing, home health, personal care, and other services. TCUs help improve the outcomes of individuals with rehabilitation care needs following complex surgical procedures, such as hip and knee replacements, and of individuals needing extensive hospital-like care for chronic illness or disease episodes. TCUs provide a number of financial and quality-management benefits, including cost savings when patients who do not need full acute care can transition to a unit with a lower level of care intensity. Medicare, private insurers, and managed care organizations have been willing to pay for care in these “step-down” units to help reduce costs. With the passage of the ACA and the implementation of bundled payment initiatives from CMS, care transitions and the coordination between acute and post-acute care services will be increasingly important in the years ahead. (Chapter 3 provided additional details on care transitions to long-term care settings.)

transitional care unit (TCU) A unit in a skilled nursing facility or hospital that provides healthcare services to individuals who need additional support after a discharge from acute care services in a hospital setting.

Person-Centered Care and Culture Change Initiatives

In 1997, a number of long-term care advocates established the Pioneer Network as an umbrella organization for person-centered care and the culture change movement in nursing homes (Pioneer Network 2022a). The intent of the movement was to return autonomy to residents for personal independence and control over their daily activities, with clinical and medical staff providing a supportive environment for their choices. According to the framework promoted by the Pioneer Network (2022b), transformation of long-term care organizations develops along a continuum of persondirectedness. The continuum ranges from an organizational culture where providers direct practices, which requires elders to comply with staff preferences and routines, to one that supports elder-directed practices wherein elders make decisions based on their individual preferences and routines. This framework illustrates the long-term commitment that organizations make to the journey of changing their culture and organizational practices. The Nursing Home Integrated Model for Producing and Assessing Cultural Transformation (Nursing Home IMPACT) includes a comprehensive set of criteria essential for

culture change movement A movement that advocates to transform the traditional medical model of long-term care by providing services in a manner that nurtures the human spirit while also meeting medical needs. This approach to service delivery is often called personcentered care or resident-directed care.

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achieving improved resident and staff life and culture change (Hartman et al. 2013). These criteria fall into four categories briefly outlined as follows: ◆◆ Organizational priorities: includes the unlearning of institutional practices, sharing ownership of the change at all levels of staff and residents, prioritizing concepts of safety and home, and aligning culture change goals with resources ◆◆ Resident priorities: includes honoring and empowering residents to make their own decisions about their individual care and activity among other issues related to organizational practices and other issues related to community living ◆◆ Staff priorities: includes empowering all staff to take an active role in workplace decisions and practices by including them in decision making, interdisciplinary teams, and collaboration ◆◆ Environmental priorities: includes creating a physical space that utilizes supportive design features to promote engagement and independence for residents Eden Alternative A philosophy of providing long-term care services in an environment that promotes quality of life for all involved, eliminating the “plagues” of boredom, loneliness, and helplessness.

Green House Project A deinstitutionalization model for longterm care in which individuals live in small homes and have access to clinical and personal care services at the same level of those provided in highquality nursing homes.

Two key models of the culture change environment are the Eden Alternative and the Green House Project. The Eden Alternative stems from the work of Dr. Bill Thomas, who received a dementia care grant from the State of New York in the early 1990s. With the grant, Dr. Thomas developed an alternative to institutional nursing home care that emphasizes the introduction of nature (e.g., plants, animals), human support systems (e.g., family visitors, children), and homelike environments (e.g., neighborhoods of rooms, carpeted halls, noninstitutional furnishings, communal dining centers). One of the primary objectives of the Eden Alternative is to relieve nursing home residents of boredom, loneliness, and helplessness—which Dr. Thomas calls the “three plagues” of nursing homes (Singh 2016). The Eden Alternative calls for changes in management practice, encouraging residents to participate in decisions about the provision of care and to provide feedback to the facility’s administration. The staff, in turn, are encouraged to treat residents with respect. Many management decisions are decentralized, and the model promotes a facility-wide commitment to human growth through relationships. Under the Green House Project, which was influenced by the Eden Alternative, residents live in small households (six to ten people) in freestanding cottages. The units are called Green Houses, and they are supported by the traditional administrative environment of the nursing home. The smaller unit size eliminates the need for nursing stations, medicine carts, and other institutional machinery. Services are typically provided by cross-trained, self-managed worker teams who support the small-scale care environment. It is based on a theory of “intentional community,” where a natural bond exists between caregivers and residents. Copying and distribution of this PDF is prohibited without written permission. For permission, please contact Copyright Clearance Center at www.copyright.com.

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life plan communities

Life plan communities (LPCs), or continuing care retirement communities (CCRCs), are residential complexes that offer comprehensive nursing care and housing options for adults as they age and their needs change. Independent living, assisted living, and skilled nursing facilities, along with their respective nursing and service components, are all located in one community. Communities typically charge an entrance fee and a monthly maintenance fee that covers all care across the individual’s life. This convenience allows adults to age in place. Life plan communities often attract active older adults, who move into independent living apartments first and then transition to assisted living within the campus if that need arises later in life. Active adults may choose from a variety of independent living dwellings, such as condominiums or single-family homes.

(LPCs) Residential complexes that offer comprehensive nursing care and housing options to adults as they age and as their needs change. Assisted living, skilled nursing, and independent living facilities, along with their respective

H i s t o ry

of

nursing and service

Life Plan Communities

Life plan communities began as continuing care retirement communities in the early 1900s. Originally, CCRCs were sponsored by churches and provided lifetime care for aging people without families; in exchange for care, residents gave their assets to the church. Today, many nonprofit organizations continue to sponsor LPCs. Some nonprofits establish communities intended for members of certain groups, such as those who share religious beliefs, an ethnic or racial background, or membership in a social or professional society (AARP 2022). L i f e P l a n C o m m u n i t i e s : S e t t i n g s , C li e n t s , O w n e r s hi p ,

and

components, are all located in one community. Also called continuing care retirement communities (CCRCs).

F i n a n ci n g

The number of life plan communities has grown rapidly since 1960. According to the National Investment Center for Seniors Housing and Care (NIC), the United States has almost 1,900 life plan communities (AARP 2022). Exhibit 4.5 examines the characteristics of LPCs (Ziegler Investment Banking 2022). Settings

Integrated community, frequently one campus, providing a wide array of services Diversified services, including independent living (IL), assisted living (AL), and skilled nursing facility (SNF) care (some communities are IL/AL only)

Clients

Affluent older adults with financial resources

Ownership

Not-for-profit sponsored or for-profit owned; rebranding common to better reflect community cultures and missions

Financing

Out-of-pocket payments, managed care insurance, and long-term care insurance payments State Medicaid or other government program payments for residents meeting means-testing guidelines

EXHIBIT 4.5 Life Plan Communities: Settings, Clients, Ownership, and Financing

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Candidates for LPCs include those adults who ◆◆ are physically able and well; ◆◆ enjoy socializing with peers and others in the community; ◆◆ prefer a secure, quiet community with easily accessible services; or ◆◆ need help with activities of daily living. Among the housing options for older adults, life plan communities are the most expensive, even though some individuals may qualify for a subsidy. For starters, an entrance fee may range from $40,000 to more than $2,000,000, depending on whether the older adult buys or rents, what amenities are included, how big the living quarters are, and what type of contract is selected (AARP 2022). Entrance fees may be nonrebatable, meaning that no refund is given if a resident moves or dies, or rebatable, meaning that a specific portion of the fee is returned, usually 50 percent to 75 percent, based on contract terms (Human Good 2022). The average entrance fee was about $402,000 in 2022, according to the NIC (AARP 2022). The communities also charge monthly fees, which were $3,555 per month on average in 2021 and rise about 2 percent a year (AARP 2022). According to Human Good (2022), the typical LPC/CCRC contracts or fee schedules include the following: ◆◆ Type A, or extensive, includes entrance and monthly fees to cover housing, services, amenities, and freedom to transfer to another part of the campus as needed. ◆◆ Type B, or modified, includes entrance and monthly fees to cover housing; assisted living / skilled nursing services are provided free or at a discount for a limited time. ◆◆ Type C, or fee-for-service, includes entrance and monthly fees to cover the housing; no free or discounted services are included, and residents pay for any service they need. ◆◆ Type D, or rental-only, involves no entrance or monthly fees, and residents pay for any service they need.

I n t e rn at i o n al P e rspe ct ives

on

R es ident ia l L ong -T erm C are

In the European Union (EU), many long-term care services are provided in residential care homes that provide nursing services or other forms of supportive care. These homes often provide custodial and nursing services for residents with extensive, long-term needs. A key

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difference between the US and EU systems involves payment for these services. EU governments typically provide heavy subsidies for their citizens’ long-term care needs. However, ownership of care facilities follows a similar pattern as it does in the United States: Many residential care homes are owned privately in EU countries, and countries with previously dominant public healthcare systems are now seeking privatization. Chapter 9 provides a more extensive discussion of international long-term care trends.

A Look Ahead Residential options for providing long-term care services in the United States have undergone tremendous expansion in recent years. A market for models of lifestyle-driven senior living has begun to emerge that will appeal to older adults long before they consider careintensive residential communities. New developments emphasizing hospitality services, such as the Latitude Margaritaville independent living model, and Disney-planned 55+ communities will offer the potential to attract successive generations (Kramer 2022). Greater emphasis on prevention, wellness and engagement, and addressing the growing needs of an estimated 15.2 million older adults who had no children and are living alone will create many new ­opportunities for senior living providers (Valerio et al. 2021). A new generation of “enhanced lifestyle residential” products will dominate consumer needs and demand (Kramer 2022). However, new options will also have to address the issues of access and affordability to meet the needs of a growing number of middle-income older adults with limited financial resources for residential long-term care while they offer products with an emphasis on purposeful longevity and engaging lifestyle.

For Discussion 1. 2. 3. 4.

Discuss the evolution of residential long-term care services in the United States. What was the role of legislation in the creation of residential care facilities? What are the recent trends in independent living, and why are they important? Discuss the concept of aging in place. What facet of long-term care embraces this concept fully? 5. What are congregate care facilities, and why are they important community living options for people with disabilities? 6. What is the philosophy of care in assisted living? Is this different from other congregate care options?

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7. How and why have assisted living services evolved over time? 8. What are some of the advantages and disadvantages of residing in a life plan community? 9. Why are care transitions and post-acute care units an important part of the process of moving an individual to residential long-term care? 10. What is culture change, and why is it important? How are the Eden Alternative and the Green House Project important initiatives in this movement?

Case Study: Prospects R e h a bili tat i o n C e n t e r

for

St. Peter’s Nursing

and

Jane Holzman is the admissions director for St. Peter’s Nursing and Rehabilitation Center, a not-for-profit skilled nursing facility in Verdant Hills, Maryland. St. Peter’s is owned by a local not-for-profit healthcare system, St. Paul’s Medical Center, and has two affiliated long-term care communities on the same campus: Marian Hills, an upscale assisted living community with a memory care unit, and St. Margaret’s Residence, a Section 202 apartment complex for middle- and low-income older adults. St. Peter’s has become an attractive residential care option for residents and their family members following the recent addition of a $10.2 million, state-of-the-art short-term rehabilitation center with private rooms that received a Silver Quality Award from the American Health Care Association. A prospective resident’s family schedules a visit with Jane on the recommendation of their local church pastor. The prospect’s daughter inquires, “My mom, Janet Jones, has been living with me since the start of the COVID-19 pandemic. She has Medicare Part A and B coverage, as well as retiree health insurance from the federal government (Blue Cross/Blue Shield). She has savings of $1.3 million from sale of her home in a money market account, and her social security, pensions, and annuity investments total nearly $8,000 a month. I am a nurse and have been taking care of her at home since the start of the pandemic. My family and a new job are putting more and more demands on my time, and I cannot take care of my mom anymore. She has vascular dementia as well as low vision and wears hearing aids. She may need some physical therapy as she has had a recent fall at home. The last time that she was in a hospital was six months ago. I have heard good things about your community and would like her to come here.” Later that day, a discharge planner from St. Paul’s calls Jane and asks if they can take Mabel Brown for rehab care in St. Peter’s as she is a resident in Marian Hills and has Medicare as her health insurance. She was admitted to St. Paul’s following a stroke. She needs assistance with personal care as well as some physical therapy and speech therapy, and she is currently using a wheelchair because of her limited mobility.

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Case Study Questions 1. What long-term care options should Janet Jones and her daughter consider? What level of care would she require? 2. If Jane accepted Janet Jones as a resident, what other types of information would you need about Janet prior to her admission? 3. Jane decides to take Mabel Brown for rehabilitation services at St. Peter’s. After three weeks of physical therapy, she is discharged back to her assisted living apartment in Marian Hills. Twenty-five days after she moves back in, she has a serious fall while trying to use the bathroom. She is sent to St. Paul’s emergency room and is admitted for care for four days. What level of care would you discharge her to after this hospital visit, what types of services might she need, and why?

References AARP. 2022. “How Continuing Care Retirement Communities Work.” Updated January 27. www.aarp.org/caregiving/basics/info-2017/continuing-care-retirement-communities. html. Argentum. 2018. Senior Living Resident Profile. Published September. www.argentum.org/ wp-content/uploads/2018/09/Senior-Living-Resident-Profile-WhitePaper.pdf. Blechman, A. D. 2008. Leisureville: Adventures in America’s Retirement Utopias. New York: Atlantic Monthly Press. Bonvissuto, K. 2022. “Pandemic Elevates Wellness on Senior Living’s Priority List.” McKnight’s Senior Living. Published June 3. www.mcknightsseniorliving.com/home/news/ pandemic-elevates-wellness-on-senior-livings-priority-list/. Brinson, K. 2020. “In America’s Oldest Active Retirement Community, Joy Endures Through the Pandemic.” National Geographic. Published October 28. www.nationalgeographic.com/ history/article/sun-city-america-oldest-active-retirement-community-joy-pandemic. Centers for Disease Control and Prevention (CDC). 2022. “Nursing Home Care.” Reviewed January 21. www.cdc.gov/nchs/fastats/nursing-home-care.htm.

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Centers for Medicare & Medicaid Services (CMS). 2022. “Nursing Home Quality Initiative.” Modified February 16. www.cms.gov/Medicare/Quality-Initiatives-Patient-➤ Assessment-Instruments/NursingHomeQualityInits. ———. 2021. “Nursing Home Value-Based Purchasing Demonstration.” Updated December 13. https://innovation.cms.gov/initiatives/Nursing-Home-Value-Based-Purchasing/. Cohousing Association of the United States. 2021. “What Is Cohousing?” Accessed August 7. www.cohousing.org/what_is_cohousing. Genworth. 2022. “Genworth 2021 Cost of Care Survey: Home Care Providers, Adult Day Health Care Facilities, Assisted Living Facilities and Nursing Homes.” Accessed August 2. www.genworth.com/aging-and-you/finances/cost-of-care.html. Gleckman, H. 2009. “A New Model for Aging in Place.” Kiplinger’s Retirement Report, January. Goehner, A. 2021. “Parents Are Creating Communities for Their Grown Children Who Have Special Needs.” AARP Livable Communities. Published November. www.aarp.org/livablecommunities/housing/info-2021/parents-creating-communities-for-adult-children-withspecial-needs.html. Haley, B., and R. W. Grey. 2008. Section 202 Supportive Housing for the Elderly: Program Status and Performance Measurement. Washington, DC: US Department of Housing and Urban Development, Office of Policy Development and Research. Harris-Kojetin, L., M. Sengupta, J. P. Lendon, V. Rome, R. Valverde, and C. Caffrey. 2019. Long-Term Care Providers and Services Users in the United States, 2015–2016. Vital and Health Statistics series 3, no. 43. National Center for Health Statistics. Published February. www.cdc.gov/nchs/data/series/sr_03/sr03_43-508.pdf. Hartman, C. W., A. L. Snow, R. S. Allen, P. A. Parmelee, J. A. Palmer, and D. Berlowitz. 2013. “A Conceptual Model for Culture Change Evaluation in Nursing Homes.” Geriatric Nursing. 34 (5): 388–94.

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Human Good. 2022. “The Complete Guide to the Costs of Senior Living.” Accessed August 2. www.humangood.org/senior-care-planning/paying-for-senior-care. Institute of Medicine (IOM). 1986. Improving the Quality of Care in Nursing Homes. Washington, DC: National Academies Press. Joint Commission. 2022a. “Federal Deemed Status.” Accessed June 7. www.jointcommission. org/resources/news-and-multimedia/fact-sheets/facts-about-federal-deemed-status/. ———. 2022b. “Nursing Care Center Certifications.” Accessed June 7. www.jointcommission.org/accreditation-and-certification/certification/certifications-by-setting/ nursing-care-center-certifications/. Kramer, B. 2022. “Hospitality’s Immense Opportunity in the New Senior Living.” Boston Hospitality Review. Published May 24.www.bu.edu/bhr/2022/05/24/ hospitalitys-opportunity-senior-living/. Medicare.gov. 2022. “Find & Compare Nursing Homes, Hospitals & Other Providers Near You.” Accessed June 7. www.medicare.gov/care-compare/. National Center for Assisted Living. 2021. “Assisted Living Community Profile.” Accessed March 29. www.ahcancal.org/ncal/resources/pages/alfacilityprofile.aspx. Office of Policy Development and Research. 2013. “Community-Centered Solutions for Aging at Home.” Evidence Matters. Published Fall. www.huduser.gov/portal/periodicals/ em/fall13/highlight3.html. Pioneer Network. 2022a. “About Us: Pioneers in Culture Change and Person-Directed Care.” Accessed June 6. www.pioneernetwork.net/About-us/Overview/. ———. 2022b. “Continuum of Person Directed Culture.” Accessed June 6. www.pioneernetwork.net/culture-change/continuum-person-directed-culture/. Redfoot, D. 2008. Overview of Assisted Living. Washington, DC: Center for Excellence in Assisted Living.

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Sanders, A., K. Smathers, T. Patterson, R. Stone, J. Kahn, J. Marshall, and K. Alecxih. 2015. Affordable Senior Housing Plus Services: What’s the Value? Washington, DC: LeadingAge Center for Housing Plus Services and the Lewin Group. Singh, D. A. 2016. Effective Management of Long-Term Care Facilities, 3rd ed. Sudbury, MA: Jones & Bartlett. Sweetwater Spectrum. 2022. “Sweetwater Spectrum Founding Principles.” Accessed June 6. https://sweetwaterspectrum.org/our-model#founding-principles. US Department of Veterans Affairs. 2020. “Geriatrics and Extended Care: Adult Family Homes.” Updated January 29. www.va.gov/geriatrics/guide/longtermcare/Adult_Family_Homes.asp. Valerio, R., B. Knop, R. M. Kreider, and W. He. 2021. Childless Older Americans: 2018. Current Population Report no. P70-173, US Census Bureau. Washington, DC: US Government Printing Office. Wilson, K. B. 2007. “Historical Evolution of Assisted Living in the United States, 1979 to the Present.” Special issue, Gerontologist 47 (3): 8–22. Ziegler Investment Banking. 2022. “A History and Profile of the LPC/CCRC Model.” Ziegler Senior Living Finance Z-News. Published May 23. http://eziegler.com/Files/ SL_ZNEWS_052322.pdf.

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CHAPTER 5

HOME, COMMUNITY-BASED, AND TECHNOLOGY SERVICES IN LONG-TERM CARE Mary Helen McSweeney-Feld, PhD

Learning Objectives After completing this chapter, you should be able to ➤➤ understand the historical foundations of home and community-based services (HCBS) and the creation of the Administration for Community Living; ➤➤ describe the characteristics of Livable Communities and age-friendly communities; ➤➤ discuss the consumers of HCBS and the types of long-term care delivered in HCBS settings; ➤➤ discuss new programs and regulatory initiatives for the provision of HCBS long-term care; and ➤➤ discuss the impact of electronic health records, telehealth, and remote monitoring on HCBS.

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Growing numbers of long-term care consumers are opting to remain independent for life in the community, and a shift toward home and community-based services (HCBS) is well under way. With the release of the World Health Organization’s Policy Framework on Active Ageing in 2002, the framework for age-friendly communities that have characteristics benefiting people of all ages was established. The notion of Livable Communities promotes the idea of individuals being able to live in their homes for the remainder of their lives, with a supportive built environment that includes respect and social inclusion as well as services delivered to consumers in their homes. In the Olmstead case in 1999 (discussed in chapters 1 and 2), the US Supreme Court confirmed that government programs had long favored institutional long-term care over community-based solutions, and it prohibited unnecessary institutionalization of people living with disabilities. The court’s ruling and other factors have prompted public healthcare programs to increasingly consider HCBS for participants needing long-term care. In 2010, the passage of the Affordable Care Act (ACA) created incentives for service delivery in home and community-based settings. In 2015, the Centers for Medicare & Medicaid Services (CMS) promulgated regulations for all Medicaid HCBS, establishing size limits and specific characteristics for participating providers, especially for those serving individuals with intellectual and developmental disabilities. Recent policy initiatives from CMS continue to promote these ideas, with enhanced funding in 2020 for Money Follows the Person programs to support transitioning individuals from nursing homes to the community (Lynch 2020). It is estimated that this shift away from institutional settings to more homelike and smaller settings could represent as much as $265 billion worth of care services for Medicare fee-for-service and Medicare Advantage beneficiaries by 2025 (Bestsennyy et al. 2022). This chapter provides an overview of HCBS in the United States, starting with the legislation that created the current networks of community-based services—the Older Americans Act and the Title XX program, which arose from an amendment to the Social Security Act. A discussion of HCBS follows, with attention to initiatives using new technologies and programs developed under the Deficit Reduction Act of 2005. In addition, the chapter presents a very brief comparison of HCBS in the United States with those in other countries and considers the provision of HCBS in light of the current global economic environment. (Chapter 9 provides a more extensive discussion of international long-term care trends.)

S o c i al P ol i c y C a r e S e r v i c es

and

T he D evelop ment

of

C ommunity -B ased

Before the 1930s, the United States had few federal social programs designed specifically for older adults. Families, charitable organizations, and local governments were expected to provide the necessary social services. A variety of factors—such as the relatively low percentage of older adults in the population, a strong belief in individual responsibility, and

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the free market economy—likely contributed to the slow response of the US government during this period (Hooyman, Kamamoto, and Kiyak 2017). In 1935, the Social Security Act ensured social insurance in retirement for qualified older Americans and helped protect the status of older adults in society. Over the next several decades, however, the federal government paid little attention to the needs of older adults. During the 1960s and 1970s, the Great Society movement and programs such as Medicare, Medicaid, Supplemental Security Income, the Older Americans Act, and Title XX laid the foundation for the provision of community-based care services in the United States. All these developments helped older persons “age in place”—that is, remain in their homes and in their communities—while receiving needed long-term care services. The addition of Section 1915(c) waivers to the Social Security Act in 1983, allowing states to create a waiver for institutional long-term care, followed by the passage of the Americans with Disabilities Act in 1990 and the Olmstead decision in 1999, solidified the legal foundation for provision of HCBS. With the Jimmo decision from the Supreme Court in 2013 and the passage of the CMS Final Rule for Medicaid state plan Section 1915 waivers in 2014, the delivery system characteristics for HCBS was clarified, providing room for further policy decisions by CMS including disaster response flexibilities introduced during the COVID-19 pandemic (Medicaid.gov 2022a). A timeline of these historical trends is presented in exhibit 5.1. F o u n d at i o n s

of

Community Services

This section provides an overview of the regulatory framework underlying the foundations of community-based services. It discusses two key pieces of US legislation—the Older Americans Act and Title XX—that laid the foundation for today’s networks of community services. It then describes the Aging Network, which serves older Americans nationwide. The Older Americans Act (OAA)

Recall from chapter 2 that the Older Americans Act (OAA) was the product of many decades of mandates, proposals, and conferences designed to help the older adult population in the United States. Enacted in 1965, the OAA ensures that funding and other resources are available to community-based programs that meet the complex needs of elders. Successive amendments to the OAA created additional programs responding to specific issues. Such programs include social, nutritional, housing, medical, mental health, training, and employment services and support not only to older adults but also to their caregivers. More important, the OAA protects the rights of vulnerable elders. The Administration on Aging (AoA) is the government agency that manages all funding, resources, and activities related to the provisions of the OAA. In this capacity, the AoA works with the organizations that are collectively known as the Aging Network.

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1930

1935: Social Security Act funding for state older adult assistance – retirement homes and adult foster care homes start

1934: National Housing Act: start of public housing

1950

1959: Section 202 Housing for Older Adults starts

1974: HUD Section 8 Housing starts

1970

1991: First co-housing community opens in Davis, CA

1990

1987: OBRA 87 – Federal Long-Term Care Survey and Medicare Requirements of Participation for nursing homes starts

1985: NORCs start in NYC

1981: Assisted living started in Oregon by Keren Brown Wilson; Sunrise Senior Living starts in VA

1971: Miller Amendment to Social Security Act creates intermediate care facilities

1965: Housing and Urban Development Act – HUD created as a cabinet level office

1950: Amendments to Social Security Act require states to develop nursing home regulations

1949: American Housing Act of 1949 – start of affordable housing movement

EXHIBIT 5.1 Home and Community-Based Services Timeline

2000

2002: First Village opens in Boston, MA as Beacon Hill Village

2010

2020

2020: CARES Act Provider Relief Act Funding for Nursing Homes and Assisted Living Communities

2016: New Medicare Requirements of Participation for Nursing Homes

2010: ACA passed; Nursing Home Transparency and Improvement Act of 2009 enacted

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The OAA consists of seven sections, or titles (Administration for Community Living [ACL] 2021; Niles-Yokum and Wagner 2019; O’Shaughnessy 2008): ◆◆ Title I defines the objectives of the act. The objectives establish a unique role for the federal and state governments in ensuring the well-being of older adults. ◆◆ Title II establishes the AoA, the administrative agency for the Older Americans Act. ◆◆ Title III provides grants to design and fund state and community programs on aging. Four areas are funded under this title: (1) supportive services, such as information and referral assistance, care management, and transportation; (2) nutritional services, such as congregate meal programs and homedelivered meals (e.g., Meals on Wheels); (3) family caregiver services and assistance programs; and (4) disease prevention and health promotion services emphasizing such aspects as nutrition counseling, fitness, education, and health screening. The Office of Nutrition and Health Promotion Programs, as well as the Office of Supportive and Caregiver Services support the activities under this title. ◆◆ Title IV provides funding and support for aging research, as well as funding for new approaches (i.e., demonstration programs) in the delivery of aging services and training. Examples of these programs include the Aging and Disability Resource Centers (ADRCs), which help frail individuals remain in the community, and Chronic Disease Self-Management Programs, which help individuals manage their own health services and chronic illnesses. ◆◆ Title V funds senior employment programs, providing part-time jobs for lowincome, unemployed individuals who are older than 55 and have limited job prospects. These Senior Community Service Employment Programs can be essential sources of income for vulnerable seniors, and their training can help seniors pursue new areas of employment. ◆◆ Title VI provides supportive funds to Native American and Native Hawaiian organizations for social and nutrition services. The Office for American Indian, Alaska Natives, and Native Hawaiian Programs supports the activities under this title. ◆◆ Title VII, added in 1972, addresses the rights of vulnerable elders by authorizing funds for elder rights protection programs, state ombudsman programs, and state legal assistance development. The Office of Elder Justice and Adult Protective Services, as well as the Office of Long-Term Care Ombudsman Programs support the activities under this title.

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Government funding of the OAA has been renewed by Congress periodically since the law’s passage; the Supporting Older Americans Act of 2020 reauthorized OAA programs through fiscal year 2024 (ACL 2021). Through amendments to the OAA, the number of groups to which services must be provided has grown considerably, and vulnerable populations that are in need of these services have also grown in size. Consequently, though programs with OAA funding retain their objective of universal participation, some have asked consumers in the programs to share some nominal cost of their services if they are able to do so. For more information on the OAA and the AoA, visit the official website at https:// acl.gov/about-acl/administration-aging. Title XX Title XX A block grant program under the Social Security Act that provides communitybased care for older adults and people

In 1975, an amendment to the Social Security Act created Title XX, a program that provides block grants for social services. The grants are fixed amounts of funding given to states for various purposes, including community-based care for older adults and people with disabilities. Title XX also provides for national coordination of elder justice activities and research through the Elder Justice Coordinating Council and the Advisory Board on Elder Abuse, Neglect, and Exploitation (Social Security Administration 2022).

living with disabilities.

The Aging Network Aging Network A comprehensive and coordinated system of home and communitybased long-term care services housed under the Administration on Aging. The network includes Area Agencies on Aging (AAAs), some of which may operate as Aging and Disability Resource Centers (ADRCs) that provide a single point of entry

The Aging Network is a group of state, local, territorial, and tribal organizations, agencies, and individuals that provide services, support, resources, and advocacy for Americans aged 60 or older. Its member organizations aim to encourage and strengthen independent living and avoid unnecessary institutionalization. Today’s Aging Network includes more than 620 Area Agencies on Aging (AAAs) operating on a local level, the State Units on Aging, more than 240 tribal and Native Hawaiian organizations, and thousands of nonprofit and for-profit organizations serving older Americans (ACL 2017a). Some AAAs may function as Aging and Disability Resource Centers (ADRCs), which provide a single point of entry for older adults, people living with disabilities, and their families to receive information about long-term services and supports available to them; however, the ADRC system is not available nationwide. According to a survey by the National Association of Area Agencies on Aging (2014), nearly three-quarters of AAAs perform ADRC functions in their communities.

for information about services and supports.

T h e E v ol u t i o n

of

Services

for

P e opl e L i v i n g

with

Disabilities

This section traces the evolution of services for people living with disabilities through five key developments: (1) the Rehabilitation Act and the Americans with Disabilities Act, (2) the Olmstead decision, (3) the Administration for Community Living, (4) the Jimmo

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decision, and (5) twenty-first century initiatives regarding health equity and social determinants of health. The Rehabilitation Act of 1973 and the Americans with Disabilities Act of 1990

After the Older Americans Act and the Aging Network had taken shape, Congress passed legislation that laid the foundation for home and community-based service provision for people with disabilities: the Rehabilitation Act of 1973, which was strengthened by the Americans with Disabilities Act of 1990 (both introduced and discussed briefly in chapter 2). The Rehabilitation Act prohibited discrimination based on disability in programs run or funded by federal agencies, or in employment policies of federal contractors. Section 504, a key part of the act, requires reasonable accommodations for individuals with disabilities, including communication assistance for individuals who have hearing or vision disabilities. The Americans with Disabilities Act (ADA), as well as the subsequent ADA Amendments Act (ADAAA) passed in 2008, provide civil rights protections to people with disabilities in the areas of employment, education, healthcare services, transportation services, telecommunication, and community participation (ADA National Network 2022). These laws provided the legal basis for later initiatives that clarified the importance of being able to remain independent for life in the community. The Olmstead Decision of 1999

In June 1999, the US Supreme Court held in Olmstead v. L.C. that unjustified segregation of persons with disabilities was a violation of Title II of the Americans with Disabilities Act. The court also stated that individuals with disabilities had the right to live in their community instead of in an institutional setting if such placement could be reasonably accommodated. This decision set the foundation for the Affordable Care Act’s Community First Choice Option, which supports choice, independence, and integration for people with disabilities in home and community-based settings. (The Olmstead decision and the Community First Choice option were discussed in greater detail in chapter 2. In this chapter, see also the related Critical Concept sidebar “Home and Community-Based Services Regulations Under Medicaid.”) The Administration for Community Living (ACL)

In 2012, the US Department of Health and Human Services brought the Administration on Aging, the Administration on Intellectual and Developmental Disabilities, and the Health and Human Services Office on Disability together under a new umbrella organization, the Administration for Community Living (ACL 2017b). The ACL focuses on developing

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CRITICAL CONCEPT Home and Community-Based Services Regulations Under Medicaid

Home and community-based services are nonmandatory services under the federal Medicaid program. States that wish to offer these services have to request Section 1915 waivers or other options under the Social Security Act. In 2014, CMS issued Final Rules that implemented Section 1915(i) State Plan HCBS; defined and described home and community-based settings across all Medicaid HCBS authorities; defined person-centered planning requirements for Sections 1915(c) and 1915(i) HCBS; and allowed states to combine target populations in one Section 1915 waiver. The intent of the rules was to increase community living benefits for all populations of older adults and individuals with disabilities, emphasizing personal autonomy, community integration, and choices in HCBS. The rules also permit states to meet their obligations under the ADA, as well as the Olmstead decision (The Arc 2014). States experienced some challenges during the COVID-19 pandemic with compliance with these regulations as state stay-at-home rules made it difficult to measure community integration in home and community-based settings. CMS permitted an extension until March 17, 2023, for states to demonstrate compliance with the settings criteria under the Final Rule (Lynch 2020).

common strategies for older adults and people with disabilities that will allow them to live independently in the community with appropriate program supports across their life span. The Jimmo Decision of 2013

As discussed in chapter 2, Jimmo v. Sebelius was a nationwide class-action lawsuit in which Medicare beneficiaries with chronic health conditions alleged that CMS contractors inappropriately applied an “improvement standard” in making claims determinations for Medicare coverage involving nursing home care, home health, and outpatient therapy benefits. (Recall from chapter 1 that a chronic health condition is a health condition lasting for a year or longer that requires ongoing medical care or limits an individual’s activities of daily living.) In 2013, a US District Court approved a settlement agreement which required CMS to confirm that Medicare coverage is determined by a beneficiary’s need for skilled care, not on a beneficiary’s potential for improvement. The Jimmo decision applies to all Medicare beneficiaries throughout the United States, regardless of whether an individual is in traditional Medicare or has a Medicare Advantage plan (Center for Medicare Advocacy 2020). This decision ensures that Medicare beneficiaries with chronic health conditions receive home care and therapy services if they need them to maintain their current health status.

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Health Equity and Social Determinants of Health Initiatives

Since the beginning of the twenty-first century, the World Health Organization (WHO) has facilitated action on a number of issues affecting health equity and social justice that had a lasting impact on home and community-based services. These included the establishment of age-friendly communities (planned environments that allow people of all ages to participate in activities to keep individuals healthy and encourage economic stability) in 2002, as well as a conceptual framework for social determinants of health (the economic and social conditions that influence individual and group differences in health status) in 2005 (WHO 2018). These are global initiatives that built the foundation for HCBS by focusing on the importance of a community’s built environment as well as affordable, accessible housing. By raising awareness of the social determinants of health, the WHO has also encouraged investments in nutrition programs, transportation systems, community planning, and development inclusive of the needs of older adults and people living with disabilities. Addressing social determinants of health is an important part of HCBS delivery. Access to nutritious food, availability of adequate transportation services, and living in an affordable, accessible, and safe environment can have a major impact on the successful delivery of health care services in a person’s home. Accountable Health Communities, a CMS initiative started in 2017, use two tracks of interventions: (1) an assistance track of assessments of community-dwelling individuals to measure the safety of individuals’ home environments as well as the need for services such as nutrition supports and transportation assistance, and (2) an alignment track that aligns community needs with community service capacity. As of 2020, there were 29 organizations participating in the Accountable Health Communities model, and preliminary results showed high acceptance of navigation and some utilization reductions among the high-need population targeted by the model (RTI International 2020). To help ensure good healthcare service outcomes, many healthcare systems have developed population health and community outreach services that partner with community organizations that provide these services as a supplement to healthcare services in a person’s home. AARP has developed a Livable Communities project as part of its age-friendly communities initiative, which includes a free HomeFit Guide that can be used by consumers to assess whether their built environment—the features of the home that they live in such as their kitchen, bathroom, and bedroom—is conducive to living in their home for the rest of their lives (AARP 2022). Services in the community such as public transportation, the walkability of streets and traffic crossings, green space for activities and recreation, and the location of essential services such as grocery stores, pharmacies, and doctors’ offices all contribute to the livability of a person’s community. The HomeFit Guide is available not only in English but also Spanish, Chinese, Korean, and Vietnamese and can be ordered via the AARP website (AARP 2022).

age-friendly communities Planned environments that allow people of all ages to participate in activities to keep individuals healthy and encourage economic stability.

Accountable Health Communities A model of care that tests whether systematically identifying and addressing the healthrelated social needs of Medicare and Medicaid beneficiaries through screening, referral, and community navigation services will impact healthcare costs and reduce healthcare service utilization.

Livable Communities As developed by AARP, communities that are safe and secure, offer choices in places to live, and equitably serve residents of all ages, ability levels, incomes, races, ethnicities, and other backgrounds.

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Types

of

C o m m u nity -B ased S ervices

This section discusses four types of HCBS: (1) senior centers, (2) adult day services, (3) home care, and (4) Centers for Independent Living. It also explores the growing role of technology services in the provision of HCBS through electronic health record systems, telehealth, and care transition services. Senior Centers senior center A place where older adults come together for services and activities that reflect their needs, interests, and experiences; support their independence and dignity; and encourage involvement in the

The senior center, one of the most popular types of services funded by the OAA, is the gateway to the Aging Network. Senior Centers connect older adults to community services that can help them stay healthy and independent. More than 60 percent of senior centers are designated focal points for OAA services, and nearly 10,000 senior centers are operating across the United States, serving more than one million adults daily, as reported by the National Council on Aging (NCOA 2022). Though the OAA provides the majority of senior center funding, most centers receive additional funds from other governmental and private sources; many centers receive funds from three to eight distinct sources (Harris-Kojetin et al. 2019).

community.

History of Senior Centers

Senior clubs have been around since the 1870s, but it was not until 1943 that a formal program began. This initiative, led by the New York City Welfare Department, spread quickly throughout the United States. In 1973, two OAA amendments (Title II and Title V) introduced the multipurpose senior center as it is known today (Niles-Yokum and Wagner 2019). Senior Centers: Settings, Clients, Ownership, and Financing

Three types of senior centers exist: (1) social centers, which offer comprehensive programs and services; (2) medical/health centers, which provide social as well as more intensive health and therapeutic services; and (3) specialized centers, which provide a specific service, such as meals or healthcare, to specific populations, such as persons with dementia or developmental disabilities (Kronkosky Charitable Foundation 2020). Exhibit 5.2 summarizes the key characteristics of the types of senior centers. There are almost 10,000 senior centers serving roughly 1 million participants daily (NCOA 2022). Participants in senior centers needed less help with activities of daily living (ADLs) compared with those using other long-term care services. Research shows that older adults who participate in senior center programs can learn to manage and delay the onset of chronic disease and that they experience improvements in physical, social, spiritual, emotional, mental, and economic well-being (NCOA 2022). However, senior

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Settings

Social (nearly 75% of centers) Medical/health Specialized center

Clients

Typically older women aged 70–79 Low to middle income level Desiring social interaction

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EXHIBIT 5.2 Senior Centers: Settings, Clients, Ownership, and Financing

Ownership Not-for-profit May have national accreditation by the National Institute of Senior Centers Financing

Home and community-based care block grants from the OAA Private funding from businesses, foundations, donors

centers faced many challenges during the COVID-19 pandemic as a result of forced closures and limited reopenings. Senior centers also have difficulty appealing to all groups of older adults because of the limited accessibility of some centers and a perception that only “older” elders can participate in senior center activities (Kronkosky Charitable Foundation 2020). A d u lt D ay S e r v i c e s

Adult day services, or adult day cares, are community-based facilities for individuals who need supervised care in a safe place outside the home during the day. Clients of adult day services include people who have physical or mental disabilities, who are elderly and cannot perform activities of daily living, or who have rehabilitation needs. In addition to serving the needs of the clients, adult day care gives caregivers a break from their duties (National Adult Day Services Association [NADSA] 2022). Most adult day service facilities are open only during the weekdays, but some operate on the weekends and during evening hours.

adult day service A community-based facility for individuals who need supervised care in a safe place outside the home during the daytime but who otherwise remain in their homes. Also

History of Adult Day Services

called adult day care.

Adult day services evolved from the “day hospital” concept developed in England after World War II ended in 1945. Many soldiers came back from the war with a variety of illnesses and injuries, and the existing hospital system was overwhelmed (Hindman 2009). Hospitals simply could not handle the demand, some of which was for long-term stays. The day hospital enabled soldiers who needed care to receive services during the day but leave by night to recuperate at home. This system freed up space for soldiers who had more urgent problems and needed to be admitted. The concept did not reach the United States until the 1970s. At the time, reports about poor conditions in nursing homes were widespread. In response, adult day cares were positioned as viable options for families who did not want their loved ones to suffer nursing

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home mistreatment (California Association of Adult Day Services 2010). The concept of adult day cares was further bolstered when federal reimbursement became available for their services (Hindman 2009). Adult Day Services: Settings, Clients, Ownership, and Financing

According to a report published by the National Center for Health Statistics (HarrisKojetin et al. 2019), 286,300 older adults enrolled in 4,600 adult day service centers in the United States in 2016. These centers had a racially and ethnically diverse clientele, with 42 percent classified as non-Hispanic white, 22.7 percent Hispanic, 15.4 percent Black, and 19.9 percent “Other.” The daily capacity of adult day services ranged from 2 to 530, averaging 66 participants per center. The majority (48.6 percent) of adult day services were not-for-profit, 45 percent for-profit, and 6.4% government owned. Adult day services had the lowest level of for-profit ownership compared with other types of long-term care services (e.g., nursing homes, home health). About three quarters (76.9 percent) of adult day services were certified or authorized to participate in Medicaid. It is important to note that in 2016, Medicare did not reimburse for or certify for services rendered in adult day service centers. Services provided in adult day service centers follow one of three models: medical, social, or specialty. The medical model offers clinical interventions and support, therapy, rehabilitation, and other health and wellness services. The social model revolves around orgaDID YOU KNOW? nized activities (e.g., parties, games, field trips) Specialty Adult Day Services that promote socialization among participants. The specialty model provides care that is tailored Adult day services have grown to serve the needs of specific to a specific need, such as Alzheimer’s disease and groups of adults, such as those needing behavioral health serother types of dementia (NADSA 2022; see also vices or diabetes management (New Jewish Home 2022). Adult the accompanying “Did You Know?” sidebar on day services have also established evening programs to adspecialty adult day services). All models emphadress the issue of sundowning—that is, wandering, sleeplesssize safety and companionship while encouraging ness, and agitation in the late afternoon and evening hours—in independence. adults with Alzheimer’s disease and other types of dementia. The estimated annual rate for adult day At the Hebrew Home for the Aged in Riverdale, New York, the services in the United States in 2021 is $28,470, Elder Serve at Night program enables clients to participate in with monthly costs averaging $2,340 or $78 per all-night activities such as painting pictures, potting plants, day (Genworth Financial 2022). The following are dancing, engaging in discussions, and listening to music. The findings from a 2019 report on adult day services clients rest as they need to and return to their homes fed, show(Harris-Kojetin et al. 2019): ered, and typically relaxed from their nightlong activities (Gotbaum 2015).

◆  ◆ Nearly 55 percent of adult day centers operate on a nonprofit basis.

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◆◆ Adults younger than age 65 make up 36.5 percent of the adult day services population, and individuals between the ages of 75 and 84 make up 27.2 percent. ◆◆ About 60 percent of the consumers of adult day services are women. ◆◆ About 52 percent of individuals receiving services at adult day service centers have Alzheimer’s or another form of dementia. ◆◆ About 23 percent of adults receiving services from adult day services have depression. Mental health services are available at 47.3 percent of adult day care centers. Ultimately, adult day services allow families to defer expensive nursing home placement and may help coordinate care for older adults living in the community. Exhibit 5.3 summarizes the key characteristics of adult day services.

Program of AllInclusive Care for the Elderly (PACE) A nonresidential program that provides healthcare, social services, and other services in a day care setting to consumers who are eligible for

Program of All-Inclusive Care for the Elderly (PACE)

The Program of All-Inclusive Care for the Elderly (PACE) model of care can be traced to the 1970s from the On Lok program of adult day services in San Francisco that provided complete medical care and social supports for older adults. In 1987, the Robert Wood Johnson Foundation and the Retirement Research Foundation provided funding to On Lok to replicate their sites, and by 1990, the PACE program received funding from Medicare and Medicaid waivers to operate (National PACE Association 2022a). Settings

Medical model, providing healthcare and other supportive services Social model, providing meals and supervised group activities Specialty model, providing care for those with Alzheimer’s disease, brain injuries, or other chronic health conditions

Clients

Nursing home–eligible clients who prefer to live in the community Consumers with chronic illnesses Predominantly women in their 70s High proportion of cognitively impaired individuals

Ownership

Not-for-profit, affiliated with hospitals, nursing homes, etc. For-profit, freestanding proprietary

Financing

State Medicaid programs Veterans Administration Private foundation sources, private donors Out-of-pocket contributions from clients Private insurance

nursing homes but choose to remain in the community. Reimbursement is a mixture, sometimes capitated, of funds from Medicare and Medicaid.

EXHIBIT 5.3 Adult Day Services: Settings, Clients, Ownership, and Financing

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home health care A wide range of medical and healthcare services provided in the home to aid with recovery from illness or injury.

nonmedical home care Supportive services provided by home care attendants that does not involve medical skill; services may include light housekeeping, meal preparation, running errands, or offering companionship.

Medicare Home Health Value-Based Purchasing Model A Medicare demonstration program that shifts payment for Medicare-certified home health care agencies from volumebased reimbursement to payments based on quality of outcomes for Medicare beneficiaries receiving home health services from the federal Medicare program.

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PACE programs are aimed at adults aged 55 or older who are eligible for Medicare and Medicaid funding to stay in nursing homes but who prefer to age in the community. It is a nonresidential adult day service model that provides a variety of healthcare and social services and support for people aged 55 or older who have chronic health conditions but can live in the community safely without 24-hour supervision. An interdisciplinary care team provides services to program participants. Reimbursement involves a mixture of funds (sometimes a fixed or capitated amount) from Medicare and state Medicaid. Participants sign a contract that requires them to receive supplemental services (inpatient and outpatient) only through a PACE sponsor, which is frequently a preidentified hospital or healthcare system. Research on PACE programs has shown their appeal to a variety of populations (including religious and ethnic groups) and in a variety of settings (both urban and rural communities). Studies tracking PACE enrollees over the years demonstrate that PACE provides better health outcomes than traditional care and services arrangements for seniors with chronic care needs. Research also demonstrates that staff members serving these individuals are more satisfied working in a PACE environment and that PACE programs are an effective use of taxpayer dollars (National PACE Association 2022b). The process for starting a PACE program, as well as the training, is strenuous, and not all elders want to commit to receiving healthcare services from just one medical center or system. Research on the impact of PACE programs during the COVID-19 pandemic has shown impressive outcomes, as elders enrolled in these programs contracted COVID-19 at one-third the rate of nursing home residents, and PACE programs pivoted to deliver core services to participants in their homes while providing cost savings to state Medicaid programs (National PACE Association 2021). Home Care

Home care includes a variety of healthcare and supportive services provided by paid or unpaid caregivers to individuals with disabilities or illnesses. (See the related Current Issue sidebar “Caregivers as Providers of Long-Term Services and Supports.”) Home care services can be organized in two types: home health care, which provides medical and other specialized services such as home infusion therapy (drug therapy provided intravenously that is given to an individual at home), and nonmedical home care, which provides private duty and home attendant services such as meal preparation, shopping, and cleaning; and assistance in paying bills. Home health care agencies may choose to participate in the federal Medicare and Medicaid programs and comply with the 2017 Final Rule for Medicare Conditions of Participation for Home Health Agencies, which requires client assessments, care plans, and electronic reporting of home health care client data and outcomes, reflecting an interdisciplinary view of patient care and greater flexibility in meeting quality care standards (CMS 2017). Medicare certified home health care agencies in nine states comply with a demonstration known as the Medicare Home Health Value-Based Purchasing Model,

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which shifts payments from volume-based reimbursement to payments based on quality of outcomes for home care consumers; this demonstration may be expanded to other states in the future as it has shown consistent cost savings and improved outcomes (CMS 2021) About 3.1 million Medicare beneficiaries received care from more than 11,400 home health agencies in 2020, with Medicare spending $17.1 billion on those services, as reported by the Medicare Payment Advisory Commission (MedPAC 2022). Home Care: Settings, Clients, Ownership, and Financing

Home care clients include people who have chronic health conditions (e.g., arthritis, diabetes), complex medical conditions (e.g., genetic disorders), physical or mental impairment, or incurable or terminal disease. As reported by Statista (Michas 2021), spending on

CURRENT ISSUE Caregivers as Providers of Long-Term Services and Supports

More than 1 in 5 Americans (21.3 percent) are caregivers, having provided care to an adult or child with special needs at some time in the past 12 months. This totals an estimated 53 million adults in the United States (AARP and National Alliance for Caregiving [NAC] 2020). A greater number of caregivers of adults are providing care to multiple people now, with 24 percent caring for two or more recipients. This finding, in combination with the increased prevalence of caregiving, suggests a nation of Americans who continue to step up to provide unpaid care to family, friends, and neighbors who might need assistance due to health or functional needs (AARP and NAC 2020). Caregiving does not discriminate: it is an activity that occurs among all generations, racial/ethnic groups, income or educational levels, family types, gender identities, and sexual orientations. Caregivers report that the adults who receive care have greater health and functional needs, and many caregivers may be taking on these responsibilities without adequate and affordable services and supports in place. Younger caregivers are also growing in number, with approximately 7 percent being unpaid caregivers younger than age 18. Caregiving is a stressful responsibility, with many caregivers reporting physical, emotional, and financial strain and 21 percent stating that they feel alone (AARP and NAC 2020). About 80 percent of caregivers report out-of-pocket expenses associated with caregiving, with the annual estimate being $7,242. The stress of caregiving has led to proposed legislation, the Credit for Caring Act, which would allow a tax deduction of up to $5,000 annually for working caregivers (Skufca and Rainville 2021).

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home health services in the United States was $101 billion in 2018, reflecting an upward spiral over a ten-year period. The majority of funding for home health services (71 percent in 2019) comes from Medicare and Medicaid. In 2015, home health agencies served an average of 401 patients annually. Professional providers (as opposed to unpaid caregivers) of home care services include home health care and nursing agencies, home care aide organizations, hospices, and a variety of independent businesses. Some home health care providers are Medicare certified (i.e., they meet Medicare Conditions of Participation for home care agencies) and are paid for their services by Medicare. Nonmedical home care agencies are typically registered with the state in which they operate and are subject to their state regulatory requirements. State Medicaid programs also reimburse for home care expenses, and these payments fall under the mandatory traditional home health benefit, the personal care option, the home and community-based waiver, or special programs under the ACA such as the Community First Choice Option. Home care Medicaid reimbursement is a growing portion of total Medicaid expenditures and has the potential to increase substantially as the population ages and more families choose home care options because of incentives created by the ACA. Exhibit 5.4 summarizes the key characteristics of home care services. Acute Hospital Care at Home Program

In 2020, CMS launched an Acute Hospital Care at Home waiver program, giving hospitals unprecedented flexibility to care for their patients at home. The program requires an in-person physician evaluation and screening protocols to assess medical and nonmedical factors before a patient can begin receiving care at home. Beneficiaries may be admitted to the program only from emergency departments and inpatient hospital beds. A registered nurse evaluates each patient once daily in person or remotely, and either registered nurses EXHIBIT 5.4 Home Care Services: Settings, Clients, Ownership, and Financing

Settings

High-tech home health care medical model, providing healthcare services (e.g., infusion therapy) Nonmedical home care providing custodial or homemaker care Specialty model, providing care for HIV/AIDS, other chronic conditions

Clients

Nursing home–eligible clients who prefer to live in the community with chronic illnesses

Ownership

Majority (80.6 percent) for-profit

Financing

Medicare and state Medicaid programs Commercial insurance, managed care plans

Source: Centers for Disease Control and Prevention (CDC 2022).

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or mobile integrated health paramedics must conduct two in-person visits daily based on the patient’s nursing plan and hospital policies (American Hospital Association 2020). Remote patient monitoring is also part of this program. Hospitals also will be required to report quality and safety data to CMS at a frequency based on their prior experience with providing acute hospital care at home. Although the Hospital at Home program may not be appropriate for all patients, it appears to be particularly well suited for individuals who have conditions with well-defined protocols such as pneumonia, congestive heart failure, chronic obstructive pulmonary disease (COPD), diabetes, or cellulitis. A rural hospital at home program has also been initiated by the University of Utah to test whether this model could be used in rural settings.

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Center for Independent Living (CIL) Model for a grassroots network of community service providers operated by and for people living with disabilities.

Centers

for

Independent Living

In the late 1960s, disability activists at the University of California, Berkeley, raised concerns about the accessibility of college campuses for all kinds of students. They saw a need for organizations that could provide counseling, information, and referral services for people living with disabilities, as well as wheelchair repair by peers who also had disabilities. As a result of this movement, the Center for Independent Living (CIL) movement was born. Today, there are more than 400 independent living centers nationally based on the CIL model and similar programs in 20 countries (CIL 2022).

electronic health record (EHR) A digital healthcare file with various data elements that provide a historical view of an individual’s healthcare and personal information at a specific organization.

E l e c t r o n i c H e a lt h R e c o r d S y s t e m s , T e l e h e a lt h , Services

and

Care Transition

As regulatory systems focus on care coordination, quality outcomes, and safety in long-term care, service providers have started to use information systems for electronic data collection, management of health records, and other tasks involving consumer information systems. Adoption of electronic health record (EHR) systems in senior living communities as well as home health agencies has been slow, ranging from 40 percent to 80 percent of providers (Enyioha, Khairat, and Kistler 2021), but requirements for electronic data collection in the Medicare Conditions of Participation for skilled nursing facilities and home care agencies may change these rates in the future. Interoperability (the ability of information systems to transmit and read data regardless of the platform) between specialized post-acute care EHRs and acute care EHRs continues to be challenging, as well as security measures that can protect long-term care providers from cyberattacks and cyber ransoming threats. Telehealth services have been used to provide care to patients throughout the twentieth and into the twenty-first century, growing from services provided over landline telephones to sophisticated telecommunication and information technology services offered via various devices and platforms, some including visual capability, for patients who are in separate locations from their healthcare providers. Use of technology in the provision

interoperability The ability of information systems to transmit and read data regardless of the technology platform (or operating system) or the software language.

telehealth services Use of electronic information and telecommunication technologies to provide care when a consumer and a healthcare provider are in separate locations.

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remote patient monitoring Use of technology to enable the monitoring of patients outside acute care settings, with the aims of increasing positive clinical outcomes and decreasing healthcare delivery costs.

mHealth The use of mobile technologies for healthcare purposes.

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of home care and remote patient monitoring services has grown in popularity because of shortages of trained home care providers, the increasing complexity and costs of transportation to and from client homes, and limited reimbursement for home care services. Video phones and web-based technologies have become widely used for medical consultations, home health support, and follow-up care. Since the passage of the ACA, many nursing and rehabilitation centers have used remote patient monitoring services to improve care transitions for individuals discharged from acute care settings to nursing homes and to prevent hospital readmissions. With the COVID-19 pandemic, telehealth services expanded dramatically as healthcare providers sought to limit consumer and staff exposure to the virus. This expansion was facilitated by temporary waivers of many telemedicine regulations and expanded reimbursement by CMS, and commercial insurance providers followed suit with increased reimbursement and waiver of copays for telehealth visits (Patel et al. 2021). The popularity of smartphones and other personal devices has led to the emerging field of mHealth, which refers to the use of mobile technologies for healthcare purposes. Simple forms of mHealth include mobile applications for patient education or for management of chronic health conditions. More complex technologies include wireless sensors to monitor vital signs (Stross 2011). In 2019, CMS approved Medicare reimbursement for remote patient monitoring (RPM). Under the program, doctors are compensated for remotely reviewing patients’ physiological data as captured by a third-party monitoring device. In January 2020, CMS added further reimbursement to enable practitioners to bill for more time spent reviewing data and broadening the pool of practice staff who can perform RPM tasks (AVS Medical 2021). Remote monitoring may significantly reduce medical costs. Studies of RPM for individuals with diabetes, congestive health failure, or COPD showed a sharp reduction in emergency room visits as well as hospital readmission rates (Kenealy et al. 2015; Park et al. 2019). A Department of Veterans Affairs study found that remote monitoring of veteran patients through a home telehealth program produced a 25 percent drop in bed days and a 19 percent drop in hospital admissions (Darkins et al. 2008). Another study of integrated telehealth and care management programs for Medicare recipients with chronic disease showed cost savings of $313 to $542 per person per quarter (Baker et al. 2011). However, research has also shown that the adoption cost for this type of technology could be significant because there are no established standards for evaluation of remote patient monitoring, and the annual cost to Medicare could be as high as $3.7 billion (Mecklai et al. 2021).

I n no vat io n s

in

HCBS: C onsumer -D irected P r ograms

The Deficit Reduction Act (DRA) of 2005 introduced three innovative, Medicaidfunded programs that give individuals incentives to use HCBS for their long-term care

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needs: (1) Cash and Counseling programs (Section 6087), (2) the HCBS State Plan (Section 1915(i) of the Social Security Act), and (3) Money Follows the Person rebalancing. This section discusses these three programs along with another HCBS program, the medical home. Cash and Counseling (also referred to as consumer directed care or self-directed services) allows individuals eligible for Medicaid to manage their healthcare budget, decide which products and services to receive, and choose how they will receive them (Sollito 2022). The consumers receive reimbursement for these services. Funds received through Cash and Counseling programs can be used not only for direct healthcare services but also to pay for services related to the recipient’s ADLs, such as cleaning services, meal preparation or delivery, laundry services, and transportation for medical appointments. A key feature of the program is that a caregiver other than a spouse (e.g., another family member, a close friend, a neighbor) can be officially hired and paid. This feature can help alleviate the financial burden on unpaid caregivers who have had to reduce their work hours or even quit their job to care for a loved one at home. (Refer back to the Current Issue sidebar on “Caregivers as Providers of Long-Term Services and Supports” for further discussion of caregiver stress.) Cash and Counseling eligibility requirements, like those of Medicaid, vary from state to state but usually stipulate that the individual be a person aged 65 or older and in need of a level of care equivalent to that of a nursing home, generally meaning assistance with two or more ADLs. State plans for home and community-based services (Section 1915(c) waiver plans) allowed states to amend their plans for provision of HCBS for older adults and people living with disabilities. States often limit services to make expenditures more predictable. In 2005 and 2010, Congress passed, and Presidents Bush and Obama, respectively, signed into law two state plan options, allowing states to expand HCBS without obtaining waivers, including those for Sections 1915(i) and 1915(k). However, because state plan options for HCBS do not require budget neutrality, states still rely heavily on waivers (Bipartisan Policy Center 2021). The Money Follows the Person (MFP) program supports state efforts for rebalancing their long-term services and supports (LTSS) system so that individuals have a choice of where they live and receive services. From the start of the program in 2008 through 2020, states transitioned more than 107,000 people to community living under MFP (Medicaid. gov 2022b). In March 2022, CMS announced that “supplemental services” would be 100 percent federally funded, with no state share required (Medicaid.gov 2022b). This funding is expected to strengthen the focus and attention on participating in the MFP demonstration and to support MFP grantees in making meaningful progress with LTSS rebalancing. All three types of these DRA programs encourage individuals to age in place in the community. They promote that approach by offering reimbursement for self-directed personal assistance (Cash and Counseling), providing supportive services through Medicaid waiver programs (HCBS state plans), or showing individuals the health and financial advantages of staying in the community for long-term care services (Money Follows the Person).

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Cash and Counseling A program that allows individuals eligible for Medicaid to manage their healthcare budget, decide which products and services to receive, and choose how they will receive them.

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medical home A care approach whereby a primary care physician, in conjunction with specialists and other healthcare providers, coordinates the access to healthcare services when and where they are needed.

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Although the intent of these programs is consistent with research suggesting that older adults prefer to age in place, the outcomes historically have shown mixed levels of success. With the passage of the ACA, the Community First Choice Option program was established under Medicaid. The program allows individuals to self-direct their services and to make the choice to be discharged from institutional settings if services and supports can be provided in the community. (This program is discussed in greater detail in chapter 2.) Another HCBS program available to those needing long-term care services is the medical home. A medical home uses a primary care physician, in conjunction with a multidisciplinary team of healthcare providers, to coordinate the access to healthcare services when and where they are needed. Services are tailored to the specific needs and wants of the individual, and progress is tracked by all members of the multidisciplinary team through electronic records (Leland 2009; Rittenhouse et al. 2009). Medical home programs exist in more than 30 states, and Medicaid provides the bulk of reimbursement for their services (Kaiser Family Foundation 2022). Medicare has begun a medical home demonstration that expands services to older adults. The approach could also be expanded to rural areas, where virtual medical homes could be created through telehealth technology and electronic medical record systems. Smart Medical Home prototypes have been investigated by numerous government agencies, including the Veterans Administration (Tomita et al. 2010).

I n t e rn at i o n al P e rs pectives

on

HCBS

In the United States, nursing homes (and, before them, almshouses and faith-based residences) used to be the traditional places where adults with disabilities who needed long-term care services received live-in care. Societal changes and the passage of the Older Americans Act and other legislation have minimized this practice. People living with disabilities and their families are now encouraged to take advantage of community-based alternatives. In many other countries, elders have traditionally been more likely to receive care at home. A belief system underlying this practice is filial piety—the idea that care of aged and aging parents is the responsibility of the children (Hooyman, Kamamoto, and Kiyak 2017). Global family and life trends, as well as the COVID-19 pandemic, have worked to reinforce this tradition despite growth in residential care services in many countries. Chapter 9 provides a more extensive discussion of international long-term care trends.

A L oo k A h e a d Historical trends such as the Great Recession of 2008 reduced the amount of money available to states to fund HCBS programs. In addition, the wide variations in state HCBS programs and states’ restrictive financial or functional eligibility standards prevented community-based long-term care providers from meeting the growing demand from consumers now and in

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the future. However, new initiatives bolstered the use of HCBS options for older adults and all types of people living with disabilities. American healthcare reform initiatives such as Medicaid waivers, the ACA, the Administration for Community Living, and various court decisions have firmly supported individuals’ choices to age in place and receive long-term care services in community settings. The impact of the COVID-19 pandemic has shown the importance of having a robust home and community-based services network in place to keep patients out of hospitals and honor their preference to be at home (Zorn 2021). The response to the COVID-19 pandemic showed cost savings and value in home based programs such as the Medicare Home Health ValueBased Purchasing Model, prompting policymakers to push through HCBS programs as viable alternatives for consumers wishing to live independently in their communities. Senior living organizations are also revisiting the idea of having home care services as part of their service line offerings (Sudo 2021). In addition, presidential initiatives to expand funding for HCBS (through the American Jobs Plan) and proposed Congressional healthcare reform bills in response to the COVID-19 pandemic such as the Better Jobs, Better Care Act of 2021 have included enhanced financial support for HCBS (Musumeci 2021). Technology continues to play an important role in the delivery of home and communitybased services. The use of electronic health records is important for acute care as well as HCBS settings, and interoperability between systems will continue to be a challenge in the interface of these systems. Most notably, cyberattacks on healthcare systems may extend to post-acute and HCBS providers, especially with greater use of telehealth and remote patient monitoring devices (Leventhal 2021).

For Discussion 1. Discuss the history of social policy and the development of community-based services. 2. Explain the role of the Older Americans Act in the provision of services for elders in the United States. 3. What is the Rehabilitation Act of 1973, and how did the Americans with Disabilities Act of 1990 extend the reach of this legislation for people with disabilities? 4. Define and compare the three models of delivery for adult day service programs. 5. Define and contrast the two models for delivery of home care services. 6. Discuss how telehealth might be used in the future to provide long-term care services. 7. Discuss two options for individuals to live independently in their homes and in the community in the United States. What are the advantages and disadvantages of each option? 8. What is the purpose of introducing a Medicaid waiver program for HCBS?

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9. What are Centers for Independent Living, and how do they assist people with disabilities who live in the community? 10. In light of current global economic and public health events, what is the outlook for HCBS in the United States in the next five years?

Case Study: Serving Senior Veterans José Lopez is the new administrator of a Veterans Health Administration (VHA) clinic in the southwestern United States. His clinic serves a population of about 300,000 across a sparsely populated desert area spanning more than 500 square miles. Meeting older adults’ needs in such a setting is particularly challenging. Many older adults in the area have chronic conditions that require ongoing attention, yet they live alone, at a great distance from the clinic. Some of the veterans have to drive for three hours to see their provider. Having come from a large VHA Medical Center in an urban area on the East Coast, José is aware of the various care delivery models the VHA has tested in its efforts to balance optimum quality of care with affordable costs for both veterans and the VHA. José is also familiar with the provisions of the Maintaining Internal Systems and Strengthening Integrated Outside Networks (MISSION) Act of 2018, which aims to improve veterans’ access to community care (US Department of Veterans Affairs [VA] 2019b). Under the new access standards, veterans may be eligible for community care if they are a 30-minute drive from VHA outpatient services or a one-hour drive from a VHA specialty care site. Eligible veterans have the choice of using VHA services or non-VHA providers who are in the network. José’s challenge is to determine which, if any, care models for senior veterans will be most effective for his new clinic and the people it serves. His hope is for the clinic to be the service provider of choice among the area’s veterans.

Background

The VHA, a component of the US Department of Veterans Affairs, is the largest health system in the United States. It provides a wide range of medical, surgical, and specialty services through a system of 1,250 healthcare facilities. Its Community-Based Outpatient Clinics (CBOCs) help make common outpatient services more easily accessible to people in rural locations. Funding for the VHA is allocated annually by Congress. Population-based approaches offer the potential to maximize both quality of services and the number of veterans served, while remaining within the allowable budget. The VHA must serve a growing number of older veterans with increasingly severe healthcare needs, and it must do so while maintaining a balanced budget. Copying and distribution of this PDF is prohibited without written permission. For permission, please contact Copyright Clearance Center at www.copyright.com.

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People receiving Geriatrics and Extended Care (GEC) services through the VHA account for 7 percent of the veterans served and 32 percent of the total VHA budget. The main pillars of GEC policy for veterans are access, balance, and care coordination (Blackburn et al. 2016; Eiken et al. 2017; Segelman et al. 2017; VA 2019a): ◆◆ Access—Optimizing the health, independence, and well-being of veterans by ensuring access to geriatrics, palliative care, and LTSS in institutions, homes, and community-based settings. ◆◆ Balance—Honoring veterans’ preferences by increasing the delivery of LTSS in home and community-based settings; in many cases, community-based care has been associated with reductions in preventable hospital and nursing home stays and emergency department visits, thereby reducing costs to the VA. ◆◆ Care coordination—Supporting optimal care coordination and management to improve quality of care and to enhance veterans’ experience as they face the challenges of aging, disability, or serious illness; coordination is especially crucial when home care is needed or during transitions between care settings. The VHA has conceptualized care for older adults using a GEC continuum of care. Care for older patients begins in ambulatory settings, where evaluation and management of geriatric syndromes are performed. Such settings also offer consultation regarding palliative care. The VHA has adopted a patient-centered medical home model for primary care based around units known as Patient Aligned Care Teams (PACTs). When senior veterans are unable to perform some ADLs or when they have challenges related to dementia, they shift to the next section of the continuum, which deals with home and community-based LTSS. If a veteran’s condition worsens and inpatient care becomes necessary, specialists in geriatric medicine can provide consultation on regular inpatient care and help address geriatric syndromes that surround acute care, such as delirium. If conditions can no longer be managed at home, the patient can receive facility-based care in nursing homes owned by the VA, in state veterans homes, or through contracts with community nursing homes. The VHA has analyzed the costs of caring for aging veterans, taking into account the various settings, and it found that in 2017, the per person costs for people in institutional settings were ten times higher than the costs for people who receive care while residing at home. S t r at e g i e s

As the VA strives to be a national leader in providing care for older adults, it must figure out how best to reduce healthcare costs. Its main options are to (1) reduce or restrict services by

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rationing who gets care or what services they get; (2) share costs by increasing copayments and shifting costs; (3) reduce the cost of services by reducing administrative expenses; or (4) meet care needs in a more efficient, lower-cost manner by preventing avoidable hospital days, improving emergency care, optimizing nursing home utilization, minimizing waste and medical errors, and aligning care with veteran and family goals. The VHA has implemented four strategies to overcome the public health challenges associated with the aging population: (1) targeting high-need, high-risk patients and aligning the intensity of its services with the wishes of the veterans being served; (2) increasing the number of geriatric-trained practitioners and caregivers in the workforce; (3) creating interdisciplinary teams, using advanced care-delivery models, and emphasizing coordination of care, staff training, and caregiver support; and (4) using technological approaches, such as telehealth, to provide care for veterans who live in remote areas. Shifting

from

A H o s p i ta l F o c u s

to

A H o m e -B a s e d O r i e n tat i o n

A substantial—and growing—proportion of veterans and their families want the option of living at their home for as long as possible. Caregivers of veterans want to provide the most loving and personal care for their family member, but they also must contend with the physical, emotional, and financial strains of caregiving. The VA is now investing in efforts to provide support to caregivers, recognizing their importance in veterans’ health. Roughly 50 percent of veterans living in nursing homes did not receive any noninstitutional care (i.e., home and community-based personal care and support) in the 12 months prior to their nursing home placement. Recent initiatives from within the VHA have begun to focus on services to enable veterans to stay at home and not be institutionalized. The VHA must find the best pathways for developing more efficient HCBS and for improving access to them. The HCBS currently available are not well integrated; they comprise a patchwork of solutions and programs that function together inefficiently. Leaders at VHA Medical Centers have reported reluctance to invest in increased HCBS, and current approaches to identifying which patients truly need these services lack precision. Exhibit 5.5 shows one VA strategy for optimizing the veteran and caregiver experience. J o s é L op e z

and

The Clinic

in

The Southwest

The VHA has invested considerable resources to advance and expand the field of geriatrics, both by establishing new clinical programs and by promoting education and research. The 20 federally mandated Geriatric Research, Education, and Clinical Centers (GRECCs), located across the country, are committed to research, education, and the development of novel clinical applications, and the Geriatrics and Extended Care Data and Analysis Center (GECDAC) supports the VHA’s data needs and evaluates the effectiveness and impact of its programs. GECDAC has also begun to provide site-specific data to assist program

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How VA will optimize the veteran and caregiver experience in the Choose Home model

Precision: Identify those most in need of noninstitutional care

Streamline referral process

Standardize Communityassessment coordinated, by an longitudinal integrated case Choose Home management team

Change the culture of care: community partnered, caregiver integrated

Provide facility feedback

151

EXHIBIT 5.5 Potential Framework for “Choose Home” Model Benefits

Promote evidencebased care that optimizes outcomes

development in settings such as the southwestern VHA clinic that José Lopez now manages. These VHA resources will be extremely useful as José tries to formulate a plan for serving the senior veterans in his region. José suspects he can cut his budget significantly if he can improve the efficiency with which these veterans and their families are served. José’s clinic is part of a Veterans Integrated Service Network (VISN), a regional VHA network in the Southwest, and he reports to the director of an urban Medical Center. However, he cannot count on anyone in another unit to have the necessary depth of knowledge about senior services. José outlines the tasks he needs to accomplish to come up with a plan for senior services that will apply to his clinic: 1. Analyze the utilization data of his clinic to determine the extent to which senior veterans use expensive inpatient services, relative to national VHA benchmarks. 2. Determine how to identify senior veterans at high risk of needing expensive services, especially nursing home care. Given staff limitations, a highly detailed research tool is likely not practical. Assessment should take into account physical health status, mental health status, functional status, family/ social support, and access to other community assets; all these factors may be relevant.

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3. Identify what data are needed to monitor the service use of senior veterans. This task involves gathering data from the array of services on the VHA continuum, many of which may not be located in his immediate community or operated by VHA. 4.

Evaluate the potential value of adding a care coordinator position. This individual would be available to guide older adults in selecting the best level of care for their needs, help them transition across services, and enhance conditions to enable them to stay at home. The coordinator would also provide counseling and education to caregivers.

5. Assess the potential for using telehealth or other electronic systems to improve access to care and ongoing monitoring for senior veterans who live a significant distance from a VHA facility.

Case Study Questions 1. What challenges does the VHA face in attempting to switch from incentivizing hospital-oriented services to incentivizing HCBS? What can be done to counter these challenges? 2. Consider the priorities of GEC: access, balance, and care coordination. Why are they important, and how do they help achieve the GEC’s goals? 3. The VHA has numerous hospitals across the nation. What issues is it likely to face in implementing a new home care–oriented pilot program? What can be done to make the process smoother? 4. How can José make use of the GECDAC data and infrastructure despite not having extensive resources? 5. Assuming that complete information about usage is necessary to maximize the efficiency of an older veteran’s care, what can a VHA clinic do to gather the essential information? How can the data be acquired from community service providers? What type of information system is appropriate and affordable for managing this information? Source: Case study adapted from Evashwick and Turner (2020).

References AARP. 2022. “AARP HomeFit Guide.” Updated February. www.aarp.org/livable-communities/housing/info-2020/homefit-guide.html.

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CHAPTER 6

HOSPICE, PALLIATIVE CARE, AND END-OF-LIFE CARE SERVICES Christina M. Daley, PhD, and Brian Feld, MSW

Learning Objectives After studying this chapter, you should be able to ➤➤ define the key terms essential to understanding the delivery of care at the end of life in a variety of settings, including inpatient and long-term care environments; ➤➤ understand the theoretical and philosophical foundations of today’s practice of hospice and palliative care; ➤➤ understand the history of the hospice movement, its growth and development in the United States, and its relevance to residents of long-term care facilities; ➤➤ understand key medical issues related to end-of-life care, including interdisciplinary pain and symptom management; ➤➤ understand the importance of such key issues as advance directives to end-of-life care; ➤➤ discuss the ethical, spiritual, and social issues involved in the delivery of hospice care; and ➤➤ understand the economic issues of hospice and palliative care relative to the inpatient and long-term care environments.

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Chapter 6: Hospice, Palliative Care, and End-of-Life Care Services

End-of-life care is a relatively new specialization in US healthcare, but it is of increasing importance as the population ages in greater numbers than ever before. According to the National Hospice and Palliative Care Organization (NHPCO 2016b), the goals of hospice and palliative medicine are to provide comfort to individuals with life-limiting illnesses, to offer relief from suffering not only to the patient but also to caregivers, and to instill the acceptance of death as a natural part of life. These goals in some ways contradict the traditional model of medicine—which has a primary goal of curing disease and thus views death as a failure—and once were met with skepticism from the medical community. Today, however, hospice and palliative medicine are widely recognized by the public and are quickly emerging as prominent components of healthcare in the United States. They play important roles in facilitating care transitions for individuals with serious illnesses to rehabilitation centers or back to the community, and in preventing hospital readmissions (as discussed in chapter 3). The field of hospice and palliative medicine presents unique challenges and opportunities for healthcare administrators. Key considerations include the great variety of locations at which such care can take place, the economic impact of end-of-life care, and the multitude of medical, social, and spiritual issues that affect such care.

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end-of-life care Care provided to patients approaching the end of life. It is focused on pain relief, comfort, respect for the patient’s decisions, support for the family, and interventions to address psychological and spiritual needs.

hospice A treatment program that provides support and comprehensive care for the dying. Hospice care focuses on maintaining quality of life by relieving

T h e o r e ti c a l

and

C o n c e p t ual F oundat ions

Hospice care addresses the physical, psychological, social, and emotional issues faced by patients and families when a patient is nearing the end of their life. It is based on centuriesold principles (see the accompanying “Did You Know?” sidebar on hospice origins) and grounded in a holistic philosophy.

physical, emotional, or spiritual suffering.

palliative medicine The comprehensive, multidisciplinary care of patients who have life-limiting illnesses

Hospice Philosophy

(chronic conditions in

In contrast to the traditional curative model of care, hospice provides support and comprehensive care for the dying and focuses on maintaining quality of life by relieving the patient’s physical, emotional, or spiritual suffering (NHPCO 2016b). Hospice care may be delivered in hospitals, in specialized hospice inpatient facilities, in long-term care facilities, or in the home. Hospice care in the United States is provided primarily through a Medicare benefit, and patients qualify on the basis of disease-specific criteria that in general indicate that the person has six months or less to live. Hospice today is an integral part of the emerging specialty of palliative medicine. Palliative medicine extends the principles of hospice “upstream” in the disease process and thus benefits a wider population at an earlier point (Ferris 2005). Any patient with a life-limiting illness, regardless of how far along their disease has progressed, can qualify for palliative medicine. This broader view accepts that some curative therapies may be

which the condition may result in death). Palliative care extends the principles of hospice care but begins at an earlier point in the disease process.

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appropriate even though the patient has been diagnosed with a fatal disease. For example, an individual in the middle stages of Alzheimer’s disease might not yet qualify for hospice care but may still have troubling symptoms that would benefit from medical attention. This person would be a prime candidate for palliative medicine. Cicely Saunders (2006, 273), who in the 1960s founded of the first modern hospice facilDID YOU KNOW? ity, defined the centrality of the dying patient to Hospice Origins hospice goals: “You matter because you are you. You matter to the last moment of your life, and we will do all we can, not only to help you die peaceArcheological evidence from human prehistoric sites suggests fully, but also to live until you die.” She served as that early humans frequently cared for injured family and group an inspiration for Florence Wald, dean of the Yale members. Healed skeletal fractures and evidence of advanced University School of Nursing, who later left that arthritis, for instance, indicate that some individuals received position to establish a similar hospice program in long periods of support and nursing care. Many religious beConnecticut in the 1970s. Wald is often credited liefs, including those of early Christianity, emphasized a reliwith the spread of the hospice movement in the gious and community responsibility to care for the sick and United States; by the time of her death in 2008, dying. By the fourth century CE, as pilgrims began journeying there were more than 3,000 US hospice programs, across Europe, monks in monasteries along pilgrimage routes serving about 900,000 patients per year (Hevesi began caring for individuals who needed shelter, became ill, or 2008). faced death on their journey (Golding 1981). The word hospice originated during this time, from the Latin hospes, meaning “host” or “guest.”

H i s t o ry

of the

Hospice Movement

The idea of hospice as a site dedicated to the care of the dying was first applied in 1842 by Jeanne Garnier, the founder of the Dames de Claire in Lyon, France. But as the nineteenth century drew to a close, hospitals were increasingly focused on new cures and procedures, not on care for the dying. The modern concept of hospice is credited to Cicely Saunders, a British physician who, in 1967, established St. Christopher’s Hospice in London (St. Christopher’s 2022). Inspired by a dying patient, she started a program that included both inpatient and home care for the terminally ill. She began developing the hospice concept when she lectured at the Yale University School of Nursing in 1965. Her philosophy of “We do not have to cure to heal” found a receptive audience. Florence Wald, dean of the school at the time, founded Connecticut Hospice in 1974. The first hospice organization in the United States, it was modeled after St. Christopher’s. A more holistic approach to the dying process was introduced to the public in 1969 with the publication of On Death and Dying, by the Swiss-born American psychiatrist Elisabeth Kübler-Ross (1969). This best-selling work destigmatized the discussion of death and established the now well-known five stages of grief model for coping with death, which was

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Chapter 6: Hospice, Palliative Care, and End-of-Life Care Services

later amended to a more expanded seven stages of grief approach (Kübler-Ross and Kessler 2014). By the late 1970s, the US federal government, through the Health Care Financing Administration (now the Centers for Medicare & Medicaid Services [CMS]), had begun testing programs at hospices throughout the United States. These early programs were followed by the creation of the Medicare Hospice Benefit in 1984, as part of the Tax Equity and Fiscal Responsibility Act. Individual states were also granted permission to include hospice benefits under Medicaid. Today, many insurance companies also offer a hospice benefit, although Medicare still covers the majority of hospice care. The National Hospice and Palliative Care Organization, established in 1978, helps promote public education about hospice and palliative care and encourages the development and expansion of palliative medicine (NHPCO 2016a). An NHPCO (2021) report indicated that in 2019, 4,840 Medicare-certified hospices were in operation, an increase of 18.3 percent from 2014. These providers served 1.61 million Medicare beneficiaries, an increase of 13.1 percent from 2014, and provided care amounting to $20.9 billion (NHPCO 2021).

Core Issues

in

H o s p ic e

and

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seven stages of grief Stages of grief that many people experience as they approach death: shock, denial, anger, bargaining, depression, testing, and acceptance.

P alliative C are

Hospice and palliative care use an interdisciplinary approach to dealing with core patient issues, including medical and psychosocial issues at the end of life. Key Medical Conditions

Most people immediately think “cancer” in relation to patients in hospice or palliative care, but such care is appropriate for many other illnesses as well. Any ailment considered life limiting, including the end stage of many chronic diseases, qualifies for hospice or palliative care. Examples of noncancer diseases include dementia; end-stage emphysema; amyotrophic lateral sclerosis (ALS), or Lou Gehrig’s disease; chronic kidney disease that requires dialysis; end-stage AIDS; and end-stage congestive heart failure. In 2019, 42.7 percent of patients admitted to hospice had a noncancer diagnosis (NHPCO 2021), with neurologically based diagnosis such as Alzheimer’s disease surpassing other conditions as the top reported diagnosis (NHPCO 2021). Providers of hospice and palliative care must address the pain and other symptoms associated with the patient’s illness (as described in the following sections) to be able to determine the appropriate therapy (see the related Critical Concept sidebar “Hospice and Palliative Care: Optimizing Therapy.”) Pain

Regardless of what illness brings a patient to seek care, pain is one of the most common symptoms treated by hospice and palliative care providers. Traditional healthcare practice

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total pain management Comprehensive assessment of and plan for a patient’s total pain, including physical, psychological, and spiritual pain.

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uses a classic Likert pain scale that ranges from 0 to 10, with 0 representing no pain and 10 representing excruciating pain, such as childbirth (Likert 1932). Unfortunately, this scale can be misleading; the number on the scale that represents unbearable pain may differ significantly between patients. For example, one patient may feel that a pain level of 8 is not tolerable, but another patient with the same condition may feel that a level of 5 is not tolerable. Another common problem in managing pain is that physicians are often reluctant to prescribe adequate medication to relieve pain. Reasons for this reluctance may include fears that the patient could become addicted, that the patient could sell pain medications for money, that the doctor’s medical license could be revoked for overprescribing narcotics, or that it may accelerate death. Studies, however, suggest that the use of opioids or sedatives at end of life does not hasten death (Bengoechea et al. 2010; Sykes and Thorns 2003; Virdun et al. 2017). In the palliative care model, providers continue to use the traditional pain scale, but pain is also viewed as a highly personal experience unique to the individual. Only the person who is suffering can define their pain level, and, regardless of the number given on the scale, only they can say whether the pain is tolerable. Additionally, hospice and palliative medicine researchers approach pain from a multidimensional perspective, recognizing that a patient’s pain could be a manifestation of emotional or spiritual distress. As a result, researchers have developed tools to measure the many factors that affect a patient’s pain level (Melzack 1975). The concept of total pain, developed by Saunders (2006), recognizes that a person’s suffering is attributable not only to physical pain but also to spiritual, psychological, and social distress. Thus today palliative medicine uses total pain m ­ anagement—­comprehensive assessment of and planning for a patient’s total pain. The concept of total pain management is consistently viewed by patients, family members and healthcare providers as a vital component of a “good death” (Meier et al. 2016; Virdun et al. 2015; Virdun et al. 2017). This new paradigm of pain management supports the use of narcotic pain medications without the fear of promoting addiction. In a landmark 2001 case, a California jury ruled that a physician was guilty of elder abuse by not adequately treating a terminally ill patient’s pain (La Ganga and Monmaney 2001). The verdict indicated that treating pain adequately is not only a moral and ethical issue for providers but a legal one as well. Research indicates that individuals who receive hospice care, including those in long-term care facilities, have better control of their pain than those who do not use hospice care (Follwell et al. 2009; National Institute on Aging 2021). Other Symptoms

In addition to controlling pain, hospice and palliative care pay close attention to other commonly occurring physical symptoms in end-of-life care, including fatigue, nausea, constipation, loss of appetite, insomnia, shortness of breath or air hunger, itching, and hiccups. Nonphysical symptoms, such as anxiety, depression, agitation, and delirium, can be equally Copying and distribution of this PDF is prohibited without written permission. For permission, please contact Copyright Clearance Center at www.copyright.com.

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distressing to the patient and caregiver; thus they are treated with equal importance. Other dimensions of care include spiritual distress, which is discussed later, and social issues such as the patient’s inability to participate in social gatherings because of illness. Feelings of isolation and abandonment can easily develop, for instance, in an individual who is no longer able to meet their friends at the weekly bingo game because they feel too ill, or in a person who avoids visiting with loved ones out of fears that disclosure of CRITICAL CONCEPT Hospice and Palliative Care: Optimizing Therapy

Hospice and palliative care teams frequently participate in discussions of the benefits and burdens of medications and interventions, keeping in mind patients’ life expectancies and goals of care (National Institute on Aging 2021). One example of the dilemmas these teams face involves the use of statins, a class of medication used to lower cholesterol. Although statins have many preventive benefits, such as lowering the risk of heart attack and stroke, their administration may cease to be beneficial for a person who has widespread cancer, who has less than six months to live, or whose goal of care is to remain as comfortable as possible. The medicine presents the burden on the patient of having to swallow another pill and exacts additional cost to the patient and to the healthcare system. When the patient is more likely to die from a cancer-related complication than a heart attack or stroke, the benefit of the statin decreases. Thus, hospice and palliative medicine providers often are tasked with the thorough review of patients’ medication lists, with the goal of removing nonessential medications during end-of-life care. Though some medications and therapies may be discontinued when a patient enters hospice or palliative care, at times new medications and therapies are begun. Other advances include new chemotherapy agents that may not cure a patient’s cancer but may shrink a tumor and thus provide symptom relief. Hospice and palliative patients also are benefiting from more frequent use of palliative radiation treatments to help slow tumor growth and reduce pain. As the utilization of hospice and palliative medicine grows, the types and number of therapies will continue to grow as well—although these new treatments often are not cost effective. The cost of hospice and palliative care is often much lower than the cost of traditional medicine because hospice and palliative care discontinue therapies not directly aimed at patient comfort. With the advent of newer and often more expensive therapies, administrators will need to be good stewards of healthcare and analyze whether the benefits gained by a patient from a particular therapy are worth the costs to the facility.

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their impending death will upset the family. The approach taken by hospice and palliative medicine is holistic in that it addresses medical and nonmedical issues with equal importance and considers these issues to be interrelated in their effect on the patient’s quality of life (Delgado-Guay et al. 2009). During end of life, effective pain and symptom management is key to increasing quality of life (Sutradhar et al. 2014). A n I n t e r d i s c i p l i n a ry A p p r o a c h

Hospice patients require a multitude of services: attention to the disease process and associated symptoms, emotional and spiritual support, assistance with navigating complex healthcare systems, support for family members, and so on. The depth and breadth of services needed, and the recognition that no single professional can adequately deliver all of them, dictate that a team approach must be used in treatment. This team approach to healthcare is not a new one, but it has been reorganized within the realm of hospice and palliative medicine. The traditional model of the interdisciplinary healthcare team involves a top-down approach. Usually, a physician is at the head of the team and directs patient care through the medical chart, the main form of communication in a traditional medical setting. Medical consultants, nurses, social workers, administrators, and other clinical personnel generally obtain information and communicate to one another via orders and notes that are recorded in the chart. Unfortunately, interpersonal communication is often lacking under the traditional medical team model. The interdisciplinary approach used by most hospice and palliative care teams differs in that each member’s input is considered on an equal footing regardless of the person’s role, and face-to-face communication about patients is the norm. This approach is the key to hospice management, allowing physicians and nurses to work side by side with social workers and chaplains to deliver comprehensive and appropriate care. Other team members may include administrators, certified nursing assistants, pharmacists, and physical therapists. Volunteers also play an essential role on the interdisciplinary team; many hospice programs offer a training course for community volunteers to introduce them to the hospice philosophy and to acquaint them with the unique challenges they may face while caring for a very ill patient. Volunteers visit and talk with patients, providing caregiving family members an opportunity to step away for a time. Some volunteers even offer comforting music or pet therapy. The insights and observations provided by volunteers about a patient and the family dynamic are invaluable to the hospice interdisciplinary team. (See also the related Critical Concept sidebar “The Dimensions Model and Its Application to End-ofLife Care.”) Medicare considers the interdisciplinary approach so important that, since December 2008, CMS has required hospice organizations, in order to maintain certification, to conduct interdisciplinary team rounds and to establish and constantly adjust the plan of care for each patient (CMS 2008). These rounds occur weekly, and all members of the

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CRITICAL CONCEPT The Dimensions Model and Its Application to End-of-Life Care

Just as the dimensions of care model (presented in chapter 1) has been a useful construct in understanding and promoting quality within the long-term care environment, it has also provided insight into compassionate end-of-life care. During the dying process, the patient and their family benefit greatly from an administration that facilitates the delivery of new medical technologies, flexible residential services, and a variety of home and community-based services. For example, hospice today is no longer based on a “no further treatment” model. Instead, palliative medicine benefits from a variety of new pain and symptom relief modalities, such as wound care, new pharmaceutical therapies, and therapeutic radiation. Modern hospice delivery systems are more flexible than they were in the past, allowing patients to move more freely from an inpatient setting back to a less restrictive residential environment as symptoms are brought under control. This flexibility is facilitated by hospice home services, including the work of volunteer providers who can assist dying individuals whether at home or at a long-term facility.

multidisciplinary team are required to attend. Each team member offers insight about the patient’s treatment plan and any concerns brought up by the individual and their caregivers. The problems are then solved together by the team. Inclusion of the patient and caregivers when formulating and adjusting the plan of care is a mandatory part of the CMS regulation. The weekly team meetings for hospice teams in inpatient hospice facilities, longterm care facilities, and home care settings can provide valuable information to administrators, who often sit on the hospice review committee. If a question arises about whether a patient continues to qualify for hospice on recertification, documentation from weekly team meetings provides the essential information regarding that patient’s ongoing needs, treatment plan, and health status. This information represents an accurate description of the patient and their case, and it provides a useful summary for people who may not be directly involved in the patient’s care. C o mm u n i c at i o n

As the average human life span increases and as advances in healthcare continue at a rapid pace, patients and families sometimes have unrealistic expectations of cure. Denial of death has been a prominent feature in Western society, and the fear of death—thanatophobia— makes discussions about end-of-life care difficult for healthcare consumers and professionals

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alike. Unfortunately, these discussions often do not occur until the dying process is already under way, by which time a person’s wishes concerning end-of-life care can be difficult to fulfill. Studies indicate that appropriate discussions with physicians and caregivers about end-of-life care are associated with less aggressive medical care, earlier hospice referrals, improved quality of life for the dying, and better caregiver adjustment in bereavement (Wright et al. 2008). With the increasing public awareness of hospice and palliative medicine, medical educators have increased their focus on such communication skills as delivering bad news and conducting family conferences (Larson and Tobin 2000). Three main areas of communication are addressed: (1) communication with the patient and caregivers, (2) communication within the interdisciplinary team, and (3) communication with other providers. The dying process is an extremely personal matter that must be handled with the utmost caring and compassion. Healthcare professionals involved in hospice and palliative medicine need to understand the terminal illness itself so that they can effectively manage the patient’s physical, emotional, and spiritual distress. This understanding comes from frequent and ongoing dialogue among the individual, the family and other caregivers, and healthcare professionals about goals of care and treatment plans. Another area of communication involves teaching the patient and caregivers what to expect as the dying process occurs. This knowledge helps alleviate fears of the unknown. Additionally, hospice and palliative medicine providers facilitate communication between the terminally ill patient and their loved ones, which allows strengthening or healing of relationships before death occurs. Medical conditions can change rapidly during the dying process, so everyone involved in a patient’s care must be kept aware of new developments. Regular communication with care teams is essential for administrators, and knowledge about a patient’s condition helps administrators make informed decisions about utilization of resources. Administrators also need to be sensitive to burnout, a common problem in this often emotionally challenging work environment. Open communication among staff members is the best insurance against work-related stress. In addition, communication between the hospice physician and the patient’s primary care physician (or supervising long-term care physician) is critically important to carrying out the treatment plan. Nonhospice providers may be unaware of advances made in pain and symptom management, and thus they may benefit from updated information from the hospice physician. When a medical condition becomes more complex, sometimes hospice and palliative care professionals must call on the expertise of consultants outside the hospice organization. Consultants may include wound care nurses, who manage severe wounds, and podiatrists, who manage ingrown toenails. Such specialists can effectively address conditions that threaten to detract from the patient’s quality of life. Be aware, however, that consultants are often reluctant to provide care to hospice patients because of concerns that their service may not be reimbursed and because of the prevailing attitude that “nothing can be done.” Administrators play a key role as advocates for such resources in the local community.

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A patient’s preferences for healthcare and other services at the end of life should be clearly communicated. A 2010 study in the Journal of Palliative Medicine found that only 15 to 22 percent of seriously ill older adult patients had their care preferences included in their medical records (Yung et al. 2010). To address this concern, the Conversation Project was started in 2011, in collaboration with the Institute for Healthcare Improvement, to encourage families to have conversations with their loved ones about their end-of-life wishes. The Conversation Project website (www.theconversationproject.org) has a free starter kit to help families determine their preferences. According to a recent survey conducted by the organization, 92 percent of people believe having a conversation with their loved ones is important, yet only 32 percent have actually had that conversation (Conversation Project 2018). The statistics show a positive change from five years earlier, however, when 90 percent of survey respondents recognized the importance of having end-of-life conversations but only 27 percent had actually had the conversation (Conversation Project 2018). The Conversation Project hopes to continue to narrow the gap. In 2015, CMS announced that starting in 2016, it would approve payment to providers for having advance care planning conversations (as a separate service) with their patients. With legal consent, conversations can take place with a patient’s informal support people, such as caregivers and other relatives. The measure establishes coverage by Medicare and Medicaid for consultations between patients and their providers about advance care planning (Armour 2015). E c o n o m i c C o n s i d e r at i o n s

As the US population rapidly ages, the economic impact of end-of-life care has become both a growing healthcare concern and a major political issue. Medicare Conditions of Participation

To qualify for the Medicare Hospice Benefit, a hospice patient must be eligible for Medicare Part A and must have a physician’s statement indicating that they have a terminal condition with a life expectancy of six months or less. Given the medical complexity and individual circumstances surrounding a terminal illness, determining the exact life expectancy of a person is virtually impossible; an individual diagnosed with a terminal illness could live longer than the anticipated six months. Because of this unpredictability, the Medicare Hospice Benefit stipulates two initial 90-day recertification periods, followed by an unlimited number of 60-day periods. Although a beneficiary is eligible for an unlimited number of 60-day benefit periods, effective January 1, 2011, the Affordable Care Act (ACA) of 2010 mandated that a hospice physician conduct a face-to-face encounter with any hospice patient expected to reach the third benefit period. Effective January 2019, physician assistants (PAs) have joined the ranks

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of providers permitted to serve as attending hospice physicians, alongside physicians and nurse practitioners (NPs), as reported by the American Academy of Physician Associates (2018). At the end of these recertification periods, a hospice physician must again state that, in their professional opinion, the patient’s life expectancy is six months or less. The patient may choose to revoke or reenroll in the Medicare Hospice Benefit at any time. Any hospice that receives certification, and therefore can bill Medicare for services, must adhere to the rules and regulations set forth by CMS. In hospice care, these rules are known as Conditions of Participation (CoPs). The CoPs cover all aspects of hospice care—from admission criteria to recertification to documentation of services—and establish the minimum standards for patient health and safety. When the Medicare Hospice Benefit was first made available in the early 1980s, the Health Care Financing Administration (predecessor of CMS) published a set of CoPs, which would remain in effect for more than 20 years. In June 2008, CMS released an updated version of the CoPs, which took effect that December (Randall 2008). Important changes to the CoPs have occurred in all major areas (CMS 2021). One area that received much attention in the new CoPs is patient and family involvement in the development of a plan of care. Specifically, once a person is enrolled in a Medicare-certified hospice program, they must receive a copy of the rights and responsibilities both verbally and in writing. These rights and responsibilities include receiving important information regarding pain and symptom management, participating in the development of the treatment plan, and the option to refuse care. Additionally, within 48 hours of electing hospice care, the patient must receive an initial nursing assessment, which determines immediate needs for care so that those needs can be met. Within five days of the patient’s enrollment in hospice, the multidisciplinary team must complete a full assessment, covering physical, psychosocial, and spiritual needs; offer bereavement counseling; and develop a drug profile. This information is then used to create an individualized plan of care, and it must be updated at least every 15 days by the team with input from the patient and their family. These time frames were new additions to the CoPs. The value of volunteers as part of the interdisciplinary care team is reinforced in the CoPs, which require volunteers to provide at least 5 percent of total hospice patient care hours. Volunteers may serve as a source of direct support to patients and families, provide clerical support, and engage in general support activities such as outreach and fund-raising (NHPCO 2019a). The CoPs also stipulate standards specific to counseling including bereavement counseling, dietary counseling and spiritual counseling. Bereavement counseling is an important part of hospice care, and it is often administered both formally and informally by all members of the multidisciplinary team. Bereavement counseling is offered to the family and other individuals involved in the plan of care for at least one year following the patient’s death (CMS 2010). Hospice members must document bereavement counseling at their initial and all subsequent visits. Dietary counseling must also be provided by a

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qualified individual when identified in the plan of care. Finally, the hospice is required to assess the patient and family members’ spiritual needs and provide spiritual counseling based on the identified needs. In terms of the drug profile, Medicare requires documentation of not only the list of medications being used but also the rationale for their use, the potential for drug interactions, and any required laboratory monitoring as a result of a medication (CMS 2010). Increasing the involvement of pharmacists in the work of the multidisciplinary team is important in reviewing patients’ medication lists. Though this task is feasible in the inpatient hospice setting, it can be challenging in the home care and long-term care environments because of the difficulties of coordinating meetings among patients and families, pharmacists, and other hospice staff members. Another area included in the CoPs is Quality Assurance and Performance Improvement, or QAPI (as described further in the next section). The CoPs mandate that hospice organizations track outcomes data, such as organizational processes of care and patient care indicators, and design and implement methods to achieve improvement in treatment outcomes and quality-of-life indicators. These performance improvement projects became mandatory in February 2009. Ultimately, the responsibility for executing these projects falls on the governing body of the hospice, including its administrators. Quality Reporting

The QAPI program is essential in identifying quality improvement opportunities and ultimately improving service delivery in a hospice program. To complement QAPI programs, the ACA established the Hospice Quality Reporting Program (HQRP). The HQRP mandates the collection and reporting of standardized quality indicators as established by CMS. The standardized quality indicators are based on the following two program components (NHPCO 2019b): ◆◆ The Hospice Item Set (HIS) collects patient-level data, which include admission data and discharge data specific to the patient. To achieve compliance, a 90 percent submission threshold must be met. ◆◆ The Consumer Assessment of Healthcare Providers and Systems (CAHPS) Hospice Survey is completed by the informal primary caregiver after the death of the hospice patient. It is intended to measure and assess the experiences of both the patient and the caregiver as well as to provide the hospice with insights into the trends and benchmarking data specific to quality. The results of the CAHPS Hospice Survey and the HIS quality measures are now publicly available on the CMS Hospice Compare website, allowing consumers to compare hospice

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continuous home care (CHC) Hospice care that provides 8 to 24 hours of care per day by a nurse or home health aide, often needed because of difficulty managing symptoms or a break in the primary caregiver support system. CHC is reevaluated every 24 hours.

general inpatient care (GIP) Hospice care provided in an inpatient setting because a patient’s care needs cannot be met at home. The setting may be a freestanding hospice facility, an inpatient hospice unit within a hospital, or an inpatient hospice unit in a skilled nursing facility.

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providers on a national level specific to the quality of care delivered. As an incentive to achieve compliance, the HQRP operates as a “pay for reporting” program, meaning that hospice providers that fail to comply with the HQRP data submission reporting requirements are penalized with a 2 percent reduction in their annual payment update—a penalty scheduled to increase to 4 percent in 2024 (CMS 2022a). One pair of measures that were debated in the late 2010s are called the Death is Imminent measures, which were finalized in the 2017 Final Rule, with reporting set to begin in summer 2019 as stated in the 2019 Final Rule (CMS 2022b). The measures are intended to determine whether the hospice provider met the needs of the hospice patient and the caregiver during the patient’s last three and seven days of life. The three-day measure assesses the percentage of hospice patients receiving a visit from clinical staff including the registered nurse and an NP, PA, or physician during the patient’s final three days of life. The seven-day measure is focused on the final seven days of the hospice patient’s life, assessing the percentage of patients receiving at least two visits from other hospice staff including a licensed practical nurse, social worker, chaplain or spiritual counselor, or hospice aide. Because of concerns regarding reliability, validity, and reportability, the seven-day measure data will not be publicly available on the CMS Care Compare website. The measure will still be reported on Certification and Survey Provider Enhanced Reporting (CASPER) QM Reports, which are intended for internal use in quality improvement. The three-day measure will continue to be available on the Care Compare site, providing valuable insights to the specific hospice as well as a comparison to the national benchmark. The Improving Medicare Post-Acute Care Transformation (IMPACT) Act of 2014 established additional requirements intended to ensure quality. Beginning in 2015, Medicarecertified hospices are surveyed every three years. The survey cycle is scheduled to continue until September 30, 2025. The IMPACT Act also requires “a medical review of hospice cases involving beneficiaries receiving more than 180 days of care in select hospices that show a preponderance of such patients” (CMS 2019).

inpatient respite care (IRC)

Cost Analysis

Hospice care provided

According to data from the NHPCO (2021) for 2019, the Medicare Hospice Benefit pays for approximately 85.4 percent of hospice care, equating to a total of $20.9 billion that year. The remainder of hospice care is paid through private insurance (6.9 percent); Medicaid hospice (5 percent); and self-pay and other payment sources (2.7 percent). Historically, there has been little change in the Medicare per diem (daily) rate since its inception in 1983; only recently have changes been made as a result of the impact of COVID-19. Hospice provides a per diem rate based on the location and intensity of services. The levels of care include continuous home care (CHC), general inpatient care (GIP), inpatient respite care (IRC), and routine home care (RHC). The per diem rate is provided regardless of whether services were provided on the given day.

in an inpatient setting when the patient’s primary caregiver is having difficulty meeting the patient’s needs at home because of caregiver stress or other issues. IRC is limited to a five-day period.

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In 2016, CMS introduced the first major change to the per diem payment rates for the four levels of care. A two-tiered payment structure was developed at the RHC level, with a higher per diem payment rate for the first 60 days and a reduced payment rate for subsequent days. Recognizing that increased levels of care are often necessary during the last days of life, a Service Intensity Add-On payment was created, which established a higher payment rate during the final seven days of a beneficiary’s life (Medicare Payment Advisory Commission [MedPAC] 2022). In 2019, CMS recalculated the per diem rates for CHC, GIP, and IRC services, increasing the reimbursement levels to reflect the costs of services more accurately. However, because of the requirement that changes must be budget neutral, the RHC per diem rates were reduced (MedPAC 2022). A large percentage of Medicare costs are for individuals in their final years of life. A Mount Sinai School of Medicine study found that out-of-pocket expenses for Medicare recipients during the five years before their death averaged about $39,000 for individuals, $51,000 for couples, and up to $66,000 for people with long-term illnesses such as Alzheimer’s (Kelley et al. 2012). However, such costs can be reduced through effective planning and discussion. A study of patients in accountable care organizations across 14 states from 2018 to 2021 found that advance care plan discussions with patients led to a $994 per member per month lower cost of care, with an average per patient cost reduction of $13,916 over 14 months (Broome et al. 2022). Hospital-based palliative care teams can both improve patients’ quality of life and reduce overall healthcare costs. Palliative care teams help facilitate endof-life discussions on such topics as the benefits and burdens of therapies, the patient’s goals of care, and earlier referrals to hospice—all of which can contribute to decreased length of stays, discontinuation of costly therapies, and prevention of future hospitalizations. Palliative care can assist in care transitions for individuals discharged from the hospital into post-acute care settings, and it has been shown to improve survival and quality of life in some populations (Temel et al. 2010). Cost savings through palliative care within the acute hospital setting were validated by a 2007 California Pacific Medical Center study, which showed that, after a palliative care team visit, average hospitalization costs decreased by about 33 percent and the average length of stay decreased by about 30 percent (Ciemins et al. 2007). Other studies have shown that utilization of hospital-based palliative care teams was associated with significant savings and that effective use of palliative and hospice care reduced Medicare costs and improved quality of care for enrollees (Kelley et al. 2013; Morrison et al. 2008). A recent meta-analysis found that a palliative care consultation within three days of hospital admission reduces the cost for adults with life-limiting illnesses (May et al. 2018). Such findings are increasingly important given the heightened emphasis on hospital readmission rates for Medicare participants.

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routine home care (RHC) A basic level of hospice care, provided most frequently in the home or in a skilled nursing facility.

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L o c at i o n s

Hospice care can be provided in a variety of physical locations. The patient’s private home is the primary setting, followed by nursing homes, skilled nursing facilities (SNFs), other hospice units, and assisted living facilities. In 2019, 48.2 percent of hospice deaths occurred in a patient’s private home, followed by 31.8 percent at a nursing facility, 11.2 percent at an inpatient hospice unit, 7.1 percent at an acute inpatient hospital, and 1.7 percent at a residential facility (NHPCO 2021). Medicare reimbursement for hospice care is directly associated with location of care. For example, the rate of reimbursement for routine home hospice is significantly lower than that for hospice care provided at an inpatient facility. Individuals who receive hospice care at a private home are visited by a hospice nurse at least once a week and may receive some help with bathing and grooming from hospice aides. Aside from brief periods of crisis or CHC, home services do not provide 24-hour care. The majority of hospice care typically comes from family or friends or providers from privately hired home health agencies. In the United States in 2019, 17.5 percent of hospice deaths took place in nursing facilities (NHPCO 2021). Many long-term care residents are unaware that they can receive hospice care while in the facility, and reluctance of healthcare workers to initiate conversations about end-of-life care promotes the underutilization of hospice care in such facilities (Casarett et al. 2005). However, the data suggest there is an increasing awareness and comfort level regarding end-of life conversations in long term care (Conversation Project 2018). Individuals who are enrolled in a hospice program while residing in a long-term care setting have been found to receive better pain management and be less likely to be hospitalized at the end of their life (Delgado-Guay et al. 2009; Gozalo and Miller 2007: National Institute on Aging 2021). Providing hospice care in a long-term care facility is not without challenges. Confusion often arises about who is “in charge” of the patient’s care—the hospice team or the long-term care team. A hospice physician may write an order for a medication, but the long-term care staff members are the ones who actually administer the medicine. Studies have found that long-term care patients under hospice care are often undertreated in both pain and nonpain symptoms (Oliver, Porock, and Zweig 2005; Rodriguez et al. 2010). Furthermore, using hospice care in a long-term care setting results in some economic disadvantages. Under the current Medicare Hospice Benefit, payment for RHC provided in a home setting is no different than that in a long-term care setting. The RHC rate, which is paid to the hospice agency, does not include payment for room and board, so if a client elects hospice care while residing in a long-term care facility, they become responsible for paying room and board and the facility receives a lower reimbursement rate for its services. For many patients covered by the Medicare Hospice Benefit, using the SNF benefit is more cost-effective than paying out of pocket for room and board. A survey of nursing home administrators found that lack of education regarding hospice care, nursing staff shortages, and financial issues was the biggest barrier to using hospice services in their facilities (Fausto 2018; Rice et al. 2004). Fortunately, studies have found that as an SNF administrator’s Copying and distribution of this PDF is prohibited without written permission. For permission, please contact Copyright Clearance Center at www.copyright.com.

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opinion of hospice improves, there is an increase in hospice enrollment within the SNF (Hanson, Sengupta, and Slubicki 2005). Therefore, further research, education, and efforts directed toward improved communication between hospice and facility staff are needed to ameliorate this situation. About one in every three hospice agencies has an inpatient hospice unit (NHPCO 2016b). Inpatient hospice units are often used for GIP when a person’s symptoms cannot be adequately managed at home. A move to an inpatient hospice unit for IRC can provide brief periods of caregiver respite and allow medications to be rapidly adjusted to attain adequate symptom relief before the individual is discharged home. Inpatient hospice facilities also are used either when the person (or their family) chooses that the person not die at home or when the caregivers are uncomfortable providing end-of-life care in the home. According to the Center to Advance Palliative Care (2022), more than 1,700 hospitals with more than 50 beds have a palliative care team, although the scope and quality of services provided vary.

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advance directive Information provided to a healthcare provider that details an individual’s wishes for medical care should that individual become incapacitated.

do-not-resuscitate (DNR) order Instructions, usually written by a physician after discussion with a patient, telling other

Ethical Issues

in

Hospice

and

P a l l i at i v e C a r e

Professional caregivers are obligated to practice ethical healthcare; they must not only provide high-quality healthcare but also do what is right for individuals who are dying. With the continued development of advanced medical technologies, myriad new treatment options and healthcare approaches are available. In hospice and palliative medicine, ethics plays an increasingly important role as the options for end-of-life care multiply. The terminally ill may not be able to communicate their wishes as they enter the dying process, and if previously they did not clearly communicate their wishes in an advance directive, loved ones may have difficulty making decisions on their behalf. Families are asking not only what can be done but also what should be done. With the variety of treatment options facing families at the end of a patient’s life, the simple do-not-resuscitate (DNR) order may be inadequate. Patients and their families may find that a more complete advance directive can convey the patient’s specific wishes regarding such treatment options as tube feeding or continuation of artificial ventilation. As part of an advance directive, the patient may designate someone as their healthcare surrogate to help make complex decisions in the event that the patient is no longer capable. An additional end-of-life planning tool that complements the advance directive is the Physician Orders for Life-Sustaining ­Treatment (POLST). The POLST form is intended for patients who are seriously ill or frail and may not wish to pursue certain treatments. The POLST form details current and future care healthcare medical wishes of the patient in an emergency situation and is written as a physician order. In doing so, the patient maintains control because the form directs first responders and other healthcare staff actions. The POLST form is designed as a portable medical order, intended to be transferred by health care providers from one provider to another. Although states may recognize different versions of the POLST form, they all are based on the same principle of ensuring that the patient’s wishes are honored at the end of life (Coalition for Compassionate Care of California 2022).

healthcare providers that, if the patient’s heart were to stop beating, they should not try to restart the patient’s heart through cardiopulmonary resuscitation or other treatments.

healthcare surrogate A person designated by a patient to make healthcare decisions for the patient in the event that the patient is no longer able to make decisions. If no healthcare surrogate has been designated by the patient, the next of kin is the healthcare surrogate by default.

Physician Orders for Life-Sustaining Treatment (POLST) A document that expresses a person’s end-of-life wishes for medical treatment.

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physician-assisted death Death intentionally hastened through a physician’s prescription of lethal doses of medication to a patient who is terminally ill.

palliative sedation Sedation administered in the last few days of life to reduce suffering from severe physical symptoms that do not respond to the typical doses of medications.

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Two dilemmas unique to hospice and palliative care are physician-assisted death and palliative sedation. Physician-assisted death involves the prescription of lethal doses of medication to hasten death for a terminally ill individual. Two types of physician-assisted death are medical aid-in-dying and physician-assisted euthanasia. In medical aid-in-dying (also known as physician-assisted suicide), the dying person is responsible for deciding if and when the medication is used and for administering the medication. In physician-assisted euthanasia, the physician administers the medication. In the United States, medical aidin-dying is legal only in the states of California, Colorado, Hawaii, Maine, New Jersey, New Mexico, Oregon, Vermont, and Washington, and in the District of Columbia; and euthanasia is illegal in all 50 states under general homicide laws (ProCon 2022). Palliative sedation involves the intentional lowering of a patient’s awareness, potentially to the point of unconsciousness, in the last few days of life with the aim of relieving severe physical symptoms that do not respond to typical doses of medications (American Academy of Hospice and Palliative Medicine 2014). Such symptoms may include pain, agitation, difficulty breathing, and tremors; such symptoms may have been controllable earlier in the patient’s illness but acutely worsen in the days just prior to death. Palliative sedation is recommended when all other options for treating the patient’s suffering have been exhausted. Although a patient’s life expectancy may be inadvertently shortened by the administration of palliative sedation, hastening of death is not the intent of the intervention. Open and clear communication is essential for helping patients and families understand the risks and benefits of palliative sedation, for obtaining informed consent, and for ensuring that the intervention is in accordance with their wishes. In some hospice and palliative care units, providers must obtain an ethics consult before initiating palliative sedation. Chapter 13 provides further discussion of ethical issues related to end-of-life care within a broader legal framework. Spirituality

and

Religion

Perhaps no other field in medicine is more uniquely suited to address a person’s spiritual needs than hospice and palliative medicine. Every religion has beliefs, rites, and rituals that are performed during the dying process or after death. The definition of spirituality, however, goes beyond the realm of religion. The Association of American Medical Colleges (1999, 25–26) offers the following definition of spirituality: Spirituality is recognized as a factor that contributes to health in many persons. The ­concept of spirituality is found in all cultures and societies. It is expressed in an

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individual’s search for meaning through participation in religion, and/or belief in God, family, naturalism, rationalism, humanism, and the arts. All these factors can influence how patients and health care professionals perceive health and illness and how they interact with one another.

In most healthcare settings, chaplains are tasked with obtaining a patient’s spiritual history and addressing their spiritual needs. Chaplains differ from traditional faith leaders in that they minister to patients of all spiritual beliefs, both religious and nonreligious. They provide support to patients by relating their own experience with illness to patients’ spirituality. Chaplains continue to fulfill this important role in the hospice setting and are in fact a requisite part of the hospice team; however, other members of the team are expected to help in this role as well. Research has shown that patients would like their physicians to show interest in their religious beliefs (MacLean et al. 2003). Because spirituality can serve as an important means of coping for dying individuals and their loved ones, all professionals who deal with end-of-life care should be familiar with taking a spiritual history. The spiritual history gives important insight into a person’s beliefs and helps the multidisciplinary team better relate to their experience. Social Issues

Hospice and palliative care have gained widespread recognition and are rapidly growing specialties. Medicare hospice programs served approximately 1.6 million people in the United States in 2019; however, among minority groups, use of end-of-life services is less common (NHPCO 2021). National data have indicated that African Americans and Hispanics/Latinos with heart disease, cancer, diabetes mellitus, and kidney disease do not receive the same quality of care and level of hospice assistance as do whites with the same diagnoses. Studies have indicated that culturally specific resistance to hospice principles may exist, especially among African Americans; the research suggests that greater diversity in hospice teams could make hospice care more acceptable to populations of color (Crawley 2005; Yancu, Farmer, and Leahman 2009). The disparities in access to healthcare in general on the basis of racial, ethnic, and socioeconomic factors have been well documented, but the specific racial and ethnic disparities in use of hospice services have received little analysis. However, epidemiological studies indicate significant racial and ethnic differences in cause of death, with Blacks and Hispanics/Latinos receiving less optimal care than whites (Cohen 2008).

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A Look Ahead During the last years of their lives, many individuals face chronic pain, psychological distress, and diminishing independence, and they need significantly increased family and medical support. Technology has helped improve the activity levels and health of people in their sixties and older, but the extension of longevity will inevitably have implications for the delivery of individualized, compassionate, and high-quality end-of-life care. The need for such services will also affect the economies of many industrialized nations. The coronavirus public health emergency that emerged in late 2019 prompted significant increases in deaths among Medicare beneficiaries. The share of Medicare beneficiary decedents who used hospice declined between 2019 and 2020, reflecting a more rapid increase in deaths than in hospice enrollments (MedPAC 2022). In addition, there was a shift in the location of hospice care, with more patients receiving care at home, in assisted living facilities, and in hospitals, and fewer patients receiving hospice in skilled nursing and hospice facilities (MedPAC 2022). The financial impact of these shifts has yet to be determined because of uncertainty about the duration of the COVID-19 pandemic and the extent to which hospice demand will persist past the end of the pandemic (MedPAC 2022). Though the benefits of hospice and palliative medicine have become more widely recognized, numerous barriers to such care still exist. Such barriers include limitations of the Medicare Hospice Benefit and requirements from the implementation of the Affordable Care Act. Additional barriers are related to the traditional focus of Western medicine on the curative model of healthcare; the small amount of research contributing to an evidencebased approach for palliative medicine; and physician discomfort with issues surrounding end-of-life care, despite new incentives for communication with patients about hospice or palliative care. The sheer demographics of a rapidly growing population of older adults and individuals living with disabilities, combined with an increased acceptance of hospice and palliative medicine, already have begun to present unique challenges and opportunities for healthcare administrators. With greater use of palliative care and hospice services in care transitions, and with physicians receiving payment from Medicare for end-of-life conversations, individuals with complex and serious medical conditions may get access to these services sooner and experience improvements in their quality of life. Another consideration impacting patients’ ability to access appropriate palliative and hospice levels of medical care is the need for the patient and their family to discuss, and clearly document, any advance care directives the patient would prefer be followed in their care transitions. The need for advanced care directives being established as early as possible within a patient’s medical care plan could become even more significant in times of potential global spread of infectious diseases. The impact of the COVID-19 pandemic is one such example affecting older and immune-compromised adults’ need to have an end of life care plan in place as quickly as possible. Resources and treatment options could be limited during a pandemic, as well as the ability to have such difficult discussions in a timely fashion (Bauer 2020). Copying and distribution of this PDF is prohibited without written permission. For permission, please contact Copyright Clearance Center at www.copyright.com.

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High-quality care in a hospice setting faces a number of challenges, especially pain management and symptom control. Healthcare administrators must understand the fundamental differences between pain management in a traditional setting and pain control in the palliative medicine paradigm, wherein the focus is on the patient’s pain threshold and adequate medication for full relief. In addition, because patients qualify for the Medicare Hospice Benefit on the basis of disease-specific criteria and life expectancy prognosis, administrators and clinicians must be familiar with the rules and regulations set forth by CMS. The ethical issues in hospice and palliative care, especially as they coincide with the continued development of advanced medical technologies, also pose challenges. The prevalence of telehealth services becoming part of the future medical landscape provides for enhanced communication while reducing direct care consultations by palliative care nurses, doctors, and other practitioners (Bauer 2020). The entire multidisciplinary team must understand the essential bioethical principles involved and be able to communicate with individuals and their families in a comprehensive and caring way that preserves quality of life as well as quality of care.

For Discussion 1. Explain the relationship between hospice and palliative care. How are these two concepts, which are related to end-of-life care, similar and different? 2. What is the key distinction between the hospice philosophy and the traditional model of medicine? 3. What were the respective impacts of Cicely Saunders and Elisabeth Kübler-Ross on the modern hospice movement? 4. Pain management is a key medical issue in palliative medicine and hospice care. Briefly discuss how the hospice paradigm of total pain management differs from pain management approaches in more traditional practice settings. 5. To qualify for the Medicare Hospice Benefit, a dying person must have a physician’s statement that they have a terminal condition with a specifically limited life expectancy. What is this expectancy? What recourse is available for a patient who lives longer than the original expectation? 6. Hospice care comes with many ethical dilemmas. Discuss the impact of new medical technologies on the delivery of high-quality hospice care. 7. Describe the multidisciplinary team approach to hospice care delivery. How does it differ from the approach seen in a traditional medical inpatient setting? 8. Name some of the available resources for hospice and palliative care team members, including administrators, for training and retraining. 9. Name some of the demographic factors that influence the rapid growth of palliative medicine as a medical specialty and the need for increasing availability of inpatient and in-the-home hospice care.

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10. Discuss two new approaches to end-of-life planning, and describe how families and individuals needing hospice care in the future may be positively affected by these changes.

C a s e S t u d y : P a l l i at i v e C a r e C h o i c e s Mrs. Guevara is a 78-year-old woman who has been suffering from memory loss for several years. She currently resides in a skilled nursing facility because she is unable to care for herself. Her husband passed away last year, and her adult daughter, Lydia, lives out of state. Sometimes Mrs. Guevara gets lonely and feels frustrated by her lack of independence. Despite taking medication for Alzheimer’s disease, her condition has been steadily progressing. She becomes confused easily and sometimes accuses the staff of stealing her belongings. In addition, she has developed bladder incontinence and difficulties maintaining her balance. Her appetite has decreased, and she tires easily. She often falls asleep while talking to Lydia on the phone. One night, Mrs. Guevara forgot to call for assistance and collapsed in the bathroom. She moaned quietly in pain, and a nurse later found her lying on the floor. Mrs. Guevara was taken to the facility’s emergency department. When Lydia received the news, she came immediately to the hospital and demanded that “everything be done” to help her mother. Mrs. Guevara was admitted to the hospital and received intravenous (IV) fluids for dehydration and antibiotics for a urinary tract infection. The orthopedic surgeon evaluated her for a broken wrist. An already confused Mrs. Guevara, now in an unfamiliar environment, became agitated while alone in her room that night. She pulled out her IV line and tried to climb out of bed. In her attempt, she fell out of bed and hit her head. A computed tomography (CT) scan of her head revealed a small bleed into her brain. Several days later, Mrs. Guevara’s urinary tract infection had resolved through treatment. However, she appeared more confused than she had been upon admission, and she was having trouble swallowing her food. She underwent an evaluation by a speech therapist, who determined that every time she swallowed, she aspirated and a small amount of food went into her lungs. Lydia inquired about a feeding tube and asked how she would care for her mother when her mother was discharged. The hospital physician had the palliative care team meet with Lydia and Mrs. Guevara to discuss her current and future healthcare issues. Mrs. Guevara was too confused to participate in the decision-making process, and because she did not complete an advance directive, the team relied on Lydia to make decisions on behalf of her mother. The palliative care team reviewed the natural course of Alzheimer’s disease with Lydia and informed her that what was happening to her mother is not uncommon. Often, when patients with Alzheimer’s disease undergo an acute setback, their dementia and related complications can progress much faster. Together, Lydia and the palliative care team tried to figure out what Mrs. Guevara’s wishes would be. They discussed the benefits and Copying and distribution of this PDF is prohibited without written permission. For permission, please contact Copyright Clearance Center at www.copyright.com.

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burdens of artificial nutrition, as well as the probability that any minor illness in the future would be distressing to Mrs. Guevara. The palliative care team notified Lydia that, at the current state of illness, her mother would qualify for hospice care, and they proceeded to review the philosophy of hospice care. After meeting with the palliative care team and taking into consideration her mother’s values, Lydia decided that her mother would not want a feeding tube but that she would want to return to her skilled nursing facility with help from the local hospice provider in managing her comfort. The next day, Mrs. Guevara was discharged from the hospital.

Case Study Questions 1. What issues need to be considered immediately, following discharge, regarding Mrs. Guevara’s care? 2. What issues will Mrs. Guevara face once her health status changes, and how should these issues be addressed? 3. How can hospice help Mrs. Guevara and Lydia? 4. What hospice services could be provided to Mrs. Guevara while she is residing in a skilled nursing facility?

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Sykes, N., and A. Thorns. 2003. “The Use of Opioids and Sedatives at the End of Life.” Lancet Oncology 4: 312–18. Temel, J. S., J. A. Greer, A. Muzikansky, E. R. Gallagher, S. Admane, V. A. Jackson, C. M. Dahlin, C. D. Blinderman, J. Jacobsen, W. F. Pirl, J. A. Billings, and T. J. Lynch. 2010. “Early Palliative Care for Patients with Metastatic Non-Small-Cell Lung Cancer.” New England Journal of Medicine 363 (8): 733–42. Virdun, C., T. Luckett, P. M. Davidson, and J. Phillips. 2015. “Dying in the Hospital Setting: A Systematic Review of Quantitative Studies Identifying the Elements of End-of-Life Care That Patients and Their Families Rank as Being Most Important.” Palliative Medicine 29: 774–96. Virdun, C., T. Luckett, K. Lorenz, P. M. Davidson, and J. Phillips. 2017. “Dying in the Hospital Setting: A Meta-Synthesis Identifying the Elements of End-of-Life Care That Patients and Their Families Describe as Being Important.” Palliative Medicine 31: 587–601. Wright, A. A., B. Zhang, A. Ray, J. W. Mack, E. Trice, T. Balboni, S. L. Mitchell, V. A. Jackson, S. D. Block, P. K. Maciejewski, and H. G. Prigerson. 2008. “Associations Between End-of-Life Discussions, Patient Mental Health, Medical Care Near Death, and Caregiver Bereavement Adjustment.” Journal of the American Medical Association 300 (14): 1665–73. Yancu, C. N., D. F. Farmer, and D. Leahman. 2009. “Barriers to Hospice Use and Palliative Care Services Use by African American Adults.” American Journal of Hospice Palliative Care 27 (4): 248–53. Yung, V. Y., A. M. Walling, L. Min, N. S. Wenger, and D. A. Ganz. 2010. “Documentation of Advance Care Planning for Community-Dwelling Elders.” Journal of Palliative Medicine 13 (7): 861–67.

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CHAPTER 7

POPULATION HEALTH, WELLNESS, AND CHRONIC HEALTH CONDITIONS Mary Helen McSweeney-Feld, PhD, and Laurencia Hutton-Rogers, DrPH

Learning Objectives After studying this chapter, you should be able to ➤➤ Describe models for population health and wellness and their application to long-term care consumers; ➤➤ understand the chronic care model and the six components of effective chronic care services delivery; ➤➤ define areas of common chronic and disabling conditions and know the implications of managing long-term care services for people with these conditions; and ➤➤ understand how care for individuals with chronic health needs can be facilitated through population health programs and initiatives.

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Chapter 7: Population Health, Wellness, and Chronic Health Conditions

With the passage of the Affordable Care Act and greater attention paid to hospital re­­ admission reduction, opportunities for coordination of care for people with chronic health conditions emerged. Using the approach of population health—a focus on the health outcomes of a group of individuals, including the distribution of such outcomes within the group—could improve the well-being of individuals with chronic health conditions (conditions lasting for a year or longer that require ongoing medical care or limit activities of daily living). Population health management allows for tracking and intervening in the health status of a specific group of people, such as older adults or people with chronic health conditions. It also offers the possibility of addressing health equity and reducing health disparities. This trend makes management of chronic health conditions one of the greatest opportunities facing the healthcare systems of the United States and other countries, both today and in the coming decades. Taking a more holistic approach of wellness can enhance the quality of life for people with chronic health conditions.

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population health The health status and health outcomes within a group of people that allows health systems, agencies, and organizations to work together to effect change locally.

health equity The state in which everyone has a fair and just opportunity to attain their highest

P o pu l at io n H e a lt h While the usage of the term population health has grown in the United States, there is no consensus on its definition. However, it has been widely accepted that population health is concerned with the distribution of health outcomes, how these outcomes are affected by health determinants, and the policies and interventions that impact those determinants. Improving health outcomes requires an interdisciplinary, collaborative, and transparent approach by health care systems, public health agencies, and other organizations that are committed to addressing health outcomes among their focus population. According to one variation of the Population Health Model (exhibit 7.1), the poli­ cies and programs that we develop at a national, state, or local level affect health factors, which are things that we can modify to improve the length and quality of life for people in our communities. These health factors include health behaviors, clinical care, social and economic factors, and the physical environment. In turn, modifications in health factors affect health outcomes, such as length of life and quality of life (University of Wisconsin Population Health Institute 2022). Population health is a key element in the broader field of public health (Caron 2022). As seen in exhibit 7.2, population health management allows for tracking of health status through the perspective of four pillars: (1) chronic care management, (2) quality and safety, (3) public health, and (4) health policy. Patient outcomes in chronic care man­ agement and in quality and safety inform the work of public health professionals, who in turn inform the work of health policymakers. This is a continuous process, and policies are created that affect each pillar.

level of health, requiring ongoing societal efforts to address injustices as well as economic, social, and other obstacles to health and healthcare.

health disparities Preventable differences in the burden of disease, injury, or violence, or in opportunities to achieve optimal health experienced by socially disadvantaged racial, ethnic, and other population groups and communities.

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EXHIBIT 7.1 A Population Health Model

Length of Life (50%)

Health Outcomes Quality of Life (50%) Tobacco Use Health Behaviors (30%)

Diet & Exercise Alcohol & Drug Use Sexual Activity

Clinical Care (20%)

Health Factors

Access to Care Quality of Care Education Employment

Social & Economic Factors (40%)

Income Family & Social Support Community Safety

public health The field concerned with advancing

Policies & Programs

Physical Environment (10%)

Air & Water Quality Housing & Transit

society’s interest in maintaining conditions in which people can be healthy; also, the

Source: County Health Rankings Model © 2014 UWPHI. Reprinted by permission of University of Wisconsin Population Health Institute.

science and art of preventing disease, prolonging life, and promoting physical health and efficiency through organized community efforts.

The Institute for Healthcare Improvement (IHI 2022) developed the Triple Aim framework to describe an approach to optimizing health system performance. The three dimensions involve increasing quality and satisfaction of care, improving population health, and reducing healthcare costs. Healthcare organizations can use this framework to improve the health of their local communities, thereby making a positive impact on public health. Exhibit 7.3 illustrates the Triple Aim framework.

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Community

Healthcare System Hospitals Outpatient Pharmacy

Local State National

Public Health System

Policymaking

Prevention Hospitals Healthcare & Public Health Systems Access Quality

State National

Healthcare System

Access Quality

Regulation, Policy, & Law Healthcare & Public Health Systems

Drivers of Health

Legislators

Health administrators

Drivers of Health

Policymakers

Researchers

Health Policy

Environmental health Professionals

Epidemiologists

Public Health

*An interprofessional team of healthcare providers includes both clinical (physicians, nurses, pharmacists, allied health professionals, dentists, radiologists) and non-clinical (healthcare administrators, quality, safety, and public health professionals) providers.

Ongoing

Community

Outpatient Community

Healthcare System

Human Behaviors Education Decision support Prevention Education Access

Drivers of Health

Drivers of Health Prevention Education Healthcare Systems Organization: workflows, protocols, & assessments Social & physical environment

Interprofessional team of healthcare providers* with systems training

Interprofessional team of healthcare providers

Source: Nash (2012). Reprinted by permission of the Governance Institute.

When

Where

What

Who

Patient

Quality & Safety

Patient

Chronic Care Management

EXHIBIT 7.2 Four Pillars of Population Health

Chapter 7: Population Health, Wellness, and Chronic Health Conditions 191

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ITA AP RC PE COST

PO PU L HEA ATIO LTH N

EXHIBIT 7.3 Triple Aim Framework

$

IHI TRIPLE AIM

EXPERIENCE OF CARE

Source: Adapted from Stiefel and Nolan (2012).

From a public health perspective, the heath of individuals and communities is impacted by factors called the social determinants of health. The Healthy People program developed by the US Department of Health and Human Services addresses public health priorities while helping individuals and communities improve their health and well-being. Social Determinants social determinants of health Conditions in the places where people, live, learn, work, and play that affect a wide range of health and quality-of-life risks and outcomes.

of

H e a lt h (SDOH)

The Centers for Disease Control and Prevention (CDC 2021a) defines the social ­determinants of health as conditions in the places where people, live, learn, work, and play that affect a wide range of health and quality-of-life risks and outcomes (exhibit 7.4). The conditions are categorized into the following five domains: 1. Healthcare access and quality 2. Neighborhood and built environment 3. Social and community context 4. Economic stability 5. Education access and quality

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Education Access and Quality

Health Care Access and Quality

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EXHIBIT 7.4 Social Determinants of Health

Neighborhood and Built Environment

Economic Stability

Social and Community Context Source: Healthy People 2030 (2022).

Each of these domains affects health behaviors and health outcomes of individu­ als in multiple ways (CMS 2021a). Healthcare access and quality includes anything related to one’s ability to obtain high-quality healthcare services—for example, access to health screenings, providers, or medications; health insurance coverage; and health literacy. The neighborhood and built environment includes anything in the physical environment where a person lives or works, encompassing such aspects as quality of housing, access to transportation, availability of grocery stores with healthful food, water and air quality, lead exposure, condition of sidewalks, and the level of violence and crime in the neighborhood. The social and community context includes the qual­ ity of relationships with others, civic participation, and the impact of incarceration, discrimination, or bullying. Economic stability addresses the financial resources people have (based on income, cost of living, and SES) and includes such issues as poverty, food insecurity, employment, and housing stability. Education access and quality stresses the importance of early childhood development and education, high school completion, higher education, and literacy. These are just some of the issues that are included in each domain. It is important to understand that whereas the domains are presented separately, the issues cross domains and influence the overall well-being of people and communities.

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Healthy People An initiative of the US Department of Health and Human Services intended to help individuals, organizations, and communities improve their health and well-being.

EXHIBIT 7.5 Healthy People 2030 Objectives Related to Older Adults

H e a lt h y P e o p l e P r o g r a m

The Healthy People program was the first initiative of the US Department of Health and Human Services intended to help individuals, organizations, and communities improve their health and well-being. The program provides goals and objectives for improving the nation’s health. Healthy People was introduced in 1979 and since then has set goals and objectives for 1990, 2000, 2010, 2020, and 2030. Healthcare and public health entities must work together on addressing the objectives for the goals to be obtained. The objec­ tives can be used to develop community health and wellness programs to address chronic health conditions among older adults and people with disabilities.

Objective Number

Objective

Baseline

Target

General OA-01

Increase the proportion of older adults with physical or cognitive health problems who get physical activity (engage in light, moderate, or vigorous leisure-time physical activities)

41.3%

51.0%

OA-04

Reduce the rate of pressure ulcer-related hospital admissions among older adults

836.9 per 100,000 adults

753.2 per 100,000 adults

OA-05

Reduce the rate of hospital admission for diabetes among older adults

293.3 per 100,000 adults

264 per 100,000 adults

DIA-01

Increase the proportion of older adults with dementia or their caregivers, who know they have it

59.7%

65.1%

DIA-02

Reduce the proportion of preventable hospitalizations in older adults with diagnosed Alzheimer’s dementia and other dementias

23.5%

19.1%

DIA-03

Increase the proportion of adults with subjective cognitive decline who have discussed their symptoms with a provider

45.4%

50.4%

Dementias

continued

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Foodborne Illness FS-03

Reduce infections caused by Listeria

0.26 per 100,000

0.21 per 100,000

551 per 100,000

496.2 per 100,000

Infectious Disease OA-07

Reduce the rate of hospital admissions for urinary tract infections among older adults

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EXHIBIT 7.5 Healthy People 2030 Objectives Related to Older Adults (continued)

Injury prevention IPV-08

Reduce fall-related deaths among older adults

64.4 deaths per 100,000

63.4 per 100,000

OA-02

Reduce the proportion of older adults who use inappropriate medications

15.9%

11.2%

OA-03

Reduce the rate of emergency department visits due to falls among older adults

6,052.2 visits per 100,000

5,477.0 visits per 100,000

Oral Conditions OH-04

Reduce the proportion of older adults with untreated root surface decay

29.1%

20.1%

OH-05

Reduce the proportion of adults aged 45 years and over who have lost all their natural teeth

7.9%

5.4%

OH-06

Reduce the proportion of adults aged 45 years and over with moderate and severe periodontitis

44.5%

39.3%

Reduce hip fractures among older adults

5.7 per1,000

4.6 per 1,000

713.9 per 100,000

642.5 per 100,000

15.6 per 1,000

12.5 per 1,000

Osteoporosis O-02

Respiratory Disease OA-06

Reduce the rate of hospital admissions for pneumonia among older adults

Sensory or Communication Disorders V-07

Reduce vision loss from age-related macular degeneration

continued

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EXHIBIT 7.5 Healthy People 2030 Objectives Related to Older Adults (continued)

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Heart Disease and Stroke HDS-01

Improve cardiovascular health in adults

3.2 mean score

3.5 mean score

HDS-02

Reduce coronary heart disease deaths

90.9 per 100,000

71.1 per 100,000

HDS-03

Reduce stroke death

37.1 per 100,000

33.4 per 100,000

Source: Healthy People 2030 (2021a).

The current Healthy People 2030 (2021a) program goal for older adults is focused on improving general health, incidence of dementias, foodborne illness, infectious disease, injury prevention, oral conditions, osteoporosis, respiratory disease, sensory or commu­ nication disorders, and heart disease and stroke. The objectives and their measures are presented in exhibit 7.5. For people with disabilities, Healthy People 2030 (2021b) goals address better management of health conditions such as arthritis, mental health and mental disorders, and sensory or communication disorders, as well as improvements in housing arrangements. The objectives and their measures are presented in exhibit 7.6. In 2022, the Centers for Medicare & Medicaid Services (CMS) introduced its Framework for Health Equity 2022–2032, which is consistent with the Healthy People 2000 Framework that first incorporated health equity as a guiding objective. The CMS Framework for Health Equity was developed in response to concerns about health dispari­ ties that emerged during the COVID-19 pandemic, with particular attention to disparities in chronic conditions and infectious diseases—including diabetes, chronic kidney disease, cancer, dementia, cardiovascular disease, HIV/AIDS, and behavioral health issues—that disproportionately affect members of underserved communities, such as older adults and people living with disabilities, as a result of prevalence, complexity, and social risk factors (CMS 2022).

W e l l ne ss wellness programs Programs that promote physical, cognitive, and emotional health and well-being of individuals and communities.

a nd

L o ng -T erm C are C ommunitie s

Wellness has become an important dimension of services and activities offered in senior living communities. Fitness directors know that wellness programs will promote physi­ cal, cognitive, and emotional well-being of individuals and communities, leading to better overall quality of life and lower costs of care. Wellness programs can also help people manage chronic health conditions and prevent or delay the onset of new ones. It is important to make a case for wellness programs based on projections such as the number of participants, functional outcomes, and return on investment.

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Objective number

Objective

Baseline

Target

Arthritis A-01

Reduce the proportion of adults with arthritis who have moderate or severe joint pain

56.8%

53.1%

A-02

Reduce the proportion of adults with arthritis whose arthritis limits their activities

41.9%

38.7%

A-03

Reduce the proportion of adults with arthritis whose arthritis limits their work (work for pay due to arthritis)

33.0%

29.5%

DH-03

Reduce the proportion of people with ­intellectual and developmental disabilities who live in institutional settings with 7 or more people

22.7%

11.5%

DH-04

Increase the proportion of homes that have an entrance without steps

51.3%

53.1%

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EXHIBIT 7.6 Healthy People 2030 Objectives Related to People with Disabilities

Housing

Mental Health and Mental Disorders DH-03

Reduce the proportion of adults with disabilities who delay preventive care because of cost

37.2%

34.9%

DH-02

Reduce the proportion of adults with ➤ disabilities who experience serious ➤ psychological distress

8.7%

7.6%

Sensory or Communication Disorders HOSCD-07

Increase the proportion of adults with ➤ hearing loss who use a hearing aid

24.4%

26.4%

V-08

Increase the use of vision rehab services by people with vision loss

4.3%

6.2%

V-09

Increase the use of assistive and adaptive devices by people with vision loss

12.4%

15.9%

Source: Healthy People 2030 (2021b).

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There are various frameworks for the dimensions of wellness, but the focus here is on the eight widely accepted dimensions of wellness shown in exhibit 7.7. Spiritual wellness is about creating meaning in your life, which may include believing in God or a higher power or having some connection to the universe, and may include activities such as prayer or meditation, participating in religious activities, or being in nature. Intellectual wellness is about cognitive function and the ability to think clearly and make good decisions. Physical wellness includes the ability to engage in physical activity, perform activities of daily living (ADLs), maintain good nutrition, and get enough sleep. Environmental wellness includes engagement in activities that help promote, improve, and protect the environment. Financial wellness includes one’s ability to manage finances, such as budgeting, saving money, and paying bills. Occupational wellness includes learning new skills, contributing skills and talents to activities that are meaningful, and teaching and sharing skills with others. Social wellness includes maintaining interpersonal relationships with friends and family, communicating with others, and meeting new people. Emotional wellness includes the ability to give and receive love, express emotions appropriately, maintain healthy self-esteem, and feel self-confidence. Having a balance in these dimensions allows people to lead an active, thriving life, which is critical for older adults and people living with disabilities. Wellness programs specifically aimed at these populations will help them maintain their health, quality of life, and dignity. EXHIBIT 7.7 Eight Dimensions of Wellness Emotional Spiritual

Social

Occupational

DIMENSIONS OF

WELLNESS

Intellectual

Physical

Financial Environmental

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C hr o n i c H e a lth C o nd i t io n s

an d

199

M anagement

The world’s population is aging, and people who have chronic health conditions are living longer than ever before. This trend makes management of chronic illness one of the great­ est challenges facing the healthcare systems of the United States and other countries, both today and in the coming decades. As of 2018, more than 50 percent of all US adults—totaling 129 million people—had one or more chronic health conditions; about 25 percent had two or more (Boersma, Black, and Ward 2020). The National Council on Aging (NCOA 2021) reports that 85 percent of adults aged 65 or older in the United States have at least one chronic health condition, and 60 percent have at least two. Incidence of multiple chronic conditions is connected to frailty, which can have negative consequences for an individual’s ability to remain independent in the community. According to the CDC (2022a), 90 percent of the $4.1 trillion in annual US healthcare expenditures are for people with chronic and mental health conditions. Global statistics show similar trends: More than 71 percent of all deaths in the world are from chronic conditions; about 77 percent of these deaths are in low- and middle-income coun­ tries, according to the World Health Organization (WHO 2021). Management of health services for individuals who have chronic health conditions requires a flexible delivery system, and the system must emphasize the potential for individu­ als to self-care for their conditions at home with lifestyle changes and supportive services. Administrators must be aware of the expansive range of diagnoses for individuals who have difficulty remaining in their communities, as well as strategies for providing quality of care for people with complex conditions. This chapter provides information on a chronic care model, the range of chronic health and disabling conditions, and interventions that can maximize quality of care for individuals with these conditions.

frailty A condition marked by a lack of resilience to physiological changes and an elevated risk of poor health outcomes. Frailty may be related to multiple physiological conditions.

The Chronic Care Model

The chronic care model is a comprehensive, coordinated, and proactive approach to car­ ing for people with chronic conditions (see exhibit 7.8). The model argues that excellent chronic care must include the following six components, which must work together to deliver safe and effective care: 1. The health system 2. Delivery system design 3. Decision support 4. Clinical information systems 5. Self-management support 6. The community Copying and distribution of this PDF is prohibited without written permission. For permission, please contact Copyright Clearance Center at www.copyright.com.

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EXHIBIT 7.8 The Chronic Care Model

Community

Health Systems

Resources and Policies

Organization of Healthcare

Self-Management Support

Informed, Activated Patient

Delivery Decision Clinical System Support Information Design Systems

Productive Interactions

Prepared, Proactive Practice Team

Improved Outcomes Source: Nash (2012). Reprinted by permission from the Governance Institute.

This model was tested and improved, culminating in the creation of the Improv­ ing Chronic Illness Care program, funded by the Robert Wood Johnson Foundation. Application of the chronic care model involves team-based care management that links healthcare providers to the community, the evolution of person-centered medical homes, and a focus on self-management of care using technology. These innovations in chronic care are found in the United States and in many European countries. The model has also been used to develop care transitions systems and care coordination models in major health systems. F r a i lt y

and

Chronic Conditions

As individuals age, multiple chronic conditions can lead to the onset of frailty. Five dimen­ sions of frailty include (1) unintentional weight loss, (2) exhaustion, (3) muscle weakness, (4) slowness while walking, and (5) low levels of activity (Fried et al. 2001). Assessment of these five dimensions using a frailty scale can indicate risk for extended long-term care. Research by Weiss (2011) proposes a connection between multiple chronic health conditions and physiological inefficiencies that often manifest as frailty. Frailty can lead to an increased need for extended care as well as greater risk of morbidity and mortality from surgery and cardiovascular conditions. A frailty measurement scale can help assess a person’s risk for adverse recovery from surgery or other medical interven­ tions. Another common assessment uses a measurement of hand grip strength as an indicator of frailty.

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Chapter 7: Population Health, Wellness, and Chronic Health Conditions

Overview

of

201

C h r o n i c H e a lt h C o n d i t i o n s

The identification and classification of chronic health conditions can be complex. Common categories include (1) bladder and incontinence issues; (2) cancer; (3) conditions affect­ ing cardiovascular and circulatory health, such as congestive heart failure, hypertension, and strokes; (4) conditions affecting cognition, such as dementia and related conditions such as Alzheimer’s disease; (5) neurological demyelinating conditions, such as multiple sclerosis and amyotrophic lateral sclerosis; (6) metabolic conditions, such as diabetes; (7) conditions affecting musculoskeletal functioning, such as arthritis and conditions of the spine and joints; (8) oral health; (9) respiratory conditions, such as asthma and chronic obstructive pulmonary disease; (10) conditions affecting sensory or communication abili­ ties, such as vision, hearing, and speech disorders, some of which may result in gait and balance problems; (11) skin conditions, including pressure ulcers; (12) viral conditions, such as HIV/AIDS; (13) behavioral health and addictive conditions, such as depression, suicidal thoughts, and substance abuse; and (14) disabilities and limiting health conditions, including traumatic brain injuries and autism spectrum disorder. A brief overview of each category is provided in the sections that follow. Bladder and Incontinence Conditions

As individuals age, their bladder and kidneys change. Urinary incontinence and urinary tract infections (UTIs) are conditions that involve reduced bladder control, and both are common among older adults. In 2022, a report by the CDC estimated that UTIs are the fifth most common healthcare infection, and nearly all infections occur in relation to instru­ mentation of the urinary tract, such as an indwelling catheter (National Healthcare Safety Network 2022). As a result, UTIs—specifically catheter-associated UTIs (CAUTIs)—are a major cause of hospital readmissions. They are so significant that CMS (2021) penalizes hospitals that perform most poorly on six quality measures, including CAUTIs, with a 1 percent reduction in Medicare payment.

urinary incontinence Loss of bladder control.

urinary tract infection (UTI) An infection in any part of the urinary system.

Cancer

About 1.9 million people per year in the United States are diagnosed with cancer, and more than 600,000 will die from cancer (American Cancer Society 2022). The American Cancer Society estimated the direct medical costs for cancer in the United States in 2015 at $183 billion, and costs could rise to $246 billion by 2030 (American Cancer Society 2022). Individuals with cancer diagnoses are frequent users of palliative care and hospice services (discussed in chapter 6).

congestive heart failure (CHF) A progressive condition that affects the ability of the heart to pump blood.

Cardiovascular and Circulatory Conditions

Congestive heart failure (CHF) is a progressive condition that affects the ability of the heart to pump blood. A narrowing of the arteries in the heart or hypertension (high blood

hypertension High blood pressure.

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accident (CVA).

pressure), especially if untreated, can lead to the onset of CHF, and nearly half of all adults aged 18 or older have hypertension (CDC 2022c). A stroke, or cerebrovascular accident (CVA), occurs when blood flow to the brain is interrupted. Conditions such as irregular heartbeat (sometimes called atrial fibrillation, or AFib), may also lead to increased stroke risk. Management of cardiovascular symptoms is critical as they have been linked to high hospital readmission rates.

dementia

Dementia and Related Disorders (Alzheimer’s Disease)

An acquired impairment

Dementia is defined by Dr. Robert Cummings as “an acquired persistent impairment of intellectual function with compromise in at least three of the following spheres of mental activity: language, memory, visuospatial skills, emotion or personality, and cognition” (Cummings and Benson 1992, 1–2). The signs and symptoms of dementia include personality change, confusion, forgetfulness, poor decision making, difficulty coping with change, repetition (e.g., asking the same question multiple times), difficulty reading quickly, difficulty with self-care (e.g., performing ADLs), and difficulty with the executive functions that allow independent living (e.g., performing instrumental ADLs). Alzheimer’s disease (AD) is a slowly progressive brain disease that leads to dementia, memory loss, and drastic changes in thinking and behavior. About 1 in 9 people aged 65 or older has AD, and incidence increases with age (Alzheimer’s Association 2022). The CMS National Partnership to Improve Dementia Care in Nursing Homes emphasizes the need to reduce the use of antipsychotic medications for residents with AD, and research has shown the value of nonpharmacological interventions to prevent problem­ atic behaviors. Dr. Al Power’s Dementia Beyond Drugs program, one such intervention, reframes people’s thoughts about dementia and encourages the use of creative solutions to diminish and eliminate these behaviors (Power 2017).

stroke The interruption of blood flow to the brain. Also called a cerebrovascular

of intellectual function that compromises three or more of the following areas of mental activity: language, memory, visual/spatial skills, emotion or personality, and cognition.

Alzheimer’s disease (AD) A progressive and fatal brain disorder that destroys brain cells and causes memory loss as well as problems with thinking and behaviors that can impair an individual’s work and social activities.

Neurological Demyelinating Conditions: MS and ALS demyelinating condition A condition wherein the myelin sheath of nerve fibers in the brain and spinal cord is damaged. Multiple sclerosis (MS) and amyotrophic lateral sclerosis (ALS) are the most common forms of

A demyelinating condition is one wherein the myelin sheath covering the nerve fibers in a person’s brain and spinal cord is damaged. Multiple sclerosis (MS), the most com­ mon form of this condition, has early onset between ages 20 and 40 and symptoms that include sensory impairments, fatigue, muscle weakness, and unsteady gait. Amyotrophic lateral sclerosis (ALS), commonly called Lou Gehrig’s disease, is a similar condition, but it is fatal because it destroys motor neurons in the brain. A demyelinating condition can affect an individual’s ability to communicate, drive, and live independently in the com­ munity. An estimated 2.5 million individuals live with such conditions (Johns Hopkins Medicine 2022).

this condition.

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Metabolic Conditions: Diabetes

Diabetes is a condition in which inability of the body to produce any or enough insulin leads to elevated levels of glucose in the blood. Diabetes has two main types: Type 1, which is typically diagnosed in children and young adults, and Type 2, the most common type among older adults and obese individuals. If left undiagnosed and untreated, diabetes can be a severely disabling condition leading to vision loss, nerve damage, stroke, and even limb amputation. Untreated diabetes increases one’s chances of living in a residential care community. As of 2022, 37.3 million Americans (11.3 percent of the population) have diabetes, and 96 million people aged 18 or older (38 percent of the adult population) have prediabetes, including 26.4 million people aged 65 or older—nearly half the people in that age group (CDC 2022d).

diabetes A condition in which the body’s inability to produce insulin leads to elevated levels of glucose in the blood.

Musculoskeletal Conditions: Arthritis and Conditions of Spine and Joints

Musculoskeletal disorders (MSDs) affect the body’s muscles, tendons, ligaments, joints, peripheral nerves, and supporting blood vessels, and are the leading contributor to disability worldwide (WHO 2021). MSDs such as arthritis, osteoporosis, and spinal conditions such as spinal stenosis, or degeneration of the spine, can occur with age and result in limitations of physical activity as well as increased risk for hip fractures. The CDC (2021b) reports that 43.5 percent of adults in the United States live with arthritis, joint pain, swelling, or limitations in movement, all of which have significant implications for productivity and incidence of disability.

musculoskeletal disorder (MSD) A condition affecting the muscles, tendons, ligaments, joints, peripheral nerves, and supporting blood vessels. Arthritis is the most common type of MSD.

Oral Health

Gum disease and tooth decay can lead to loss of teeth if left untreated. Older adults are at higher risk of having decay on their teeth as well as loss of teeth due to improper dental hygiene. People who smoke cigarettes and people with diabetes are more likely to have periodontitis, or gum disease. Although complete tooth loss is less common than it used to be, disparities by age, race/ethnicity, education level, and income remain (CDC 2021d).

chronic obstructive pulmonary disease (COPD) A category of lung

Respiratory Conditions

Lung disorders such as asthma or chronic obstructive pulmonary disease (COPD) were the fourth leading cause of death in the United States in 2018, and approximately 15.7 million Americans reported that they have been diagnosed with COPD (CDC 2021c). COPD has been identified as a major cause for hospital readmissions (Fingar and Washington 2015). Pneumonia is an infection of the lungs that can be caused by bacteria, viruses, or fungi. Diagnosis and treatment of these respiratory conditions are essential to promote improved quality of life and to help people live independently in the community.

diseases that block airflow and make breathing difficult.

pneumonia An infection of the lungs caused by bacteria, viruses, or fungi.

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Sensory Conditions or Communication Conditions

As individuals grow older, changes in vision are normal, and routine vision screenings and care can identify a number of vision problems and limit their impact on ADLs, such as driving a car. Age-related macular degeneration is the leading cause of vision loss in older adults (Healthy People 2030 [2021a]). Nearly 25 percent of Americans aged 65–74—and 50 percent of those aged 75 or older—have disabling hearing loss (National Institute on Deafness and Other Communication Disorders 2021). Conditions affecting hearing and speech can impede communication and also lead to higher rates of anxiety, depression, and other disorders. Access to hearing aids gives people the opportunity to hear better and communicate more clearly. Vision and hearing problems that result in dizziness frequently contribute to gait and balance problems in older adults, and they therefore are a primary cause of falls. Every year in the United States, an estimated 1.6 million older adults go to emergency depart­ ments for fractures and other injuries related to falls; such incidents often lead to hospital stays and disability (National Institutes of Health 2016). Administrators should understand fall risks and introduce fall prevention programs as part of their risk management or qual­ ity improvement program. (Chapter 16 discusses risk management, quality, and safety in long-term care). Skin Conditions pressure ulcers Localized areas of tissue damage or necrosis that develop because of pressure over a bony prominence.

Aging can cause changes in skin that make it more prone to disease. Pressure ulcers are localized areas of tissue damage or necrosis that develop because of pressure over a bony prominence. Known informally as bedsores, pressure ulcers may develop in nonambulatory persons and can cause serious infections which are life-threatening (Wake 2010). Cellulitis is a bacterial infection that if left untreated can spread to lymph nodes and the bloodstream and become life threatening. Viral Conditions: HIV/AIDS

About one half of all Americans living with HIV/AIDS are adults aged 55 or older (CDC 2022b). A variety of factors explain why incidence of HIV in older adults has not dimin­ ished. As older adults become widowed or divorced, they may return to dating and have increased sexual activity; they may also believe that they do not have the same risks for HIV. People aged 50 or older with HIV are frequently diagnosed in the later stages in the illness. Such late diagnoses may occur because healthcare providers do not typically check older adults for HIV. In addition, older adults may mistake symptoms of HIV as signs of aging. Some older adults may be concerned about a stigma surrounding HIV and therefore avoid seeking treatment or disclosing their HIV status.

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Behavioral Health and Substance Use

According to the Substance Abuse and Mental Health Services Administration (SAMHSA 2019), more than 20 percent of adults aged 55 or older in the United States have behavioral health, or mental health, concerns, with 4.8 percent having serious mental illness. Glob­ ally, the numbers are similar, with more than 20 percent of adults aged 60 or older having mental or neurological disorders (WHO 2017). The most common behavioral conditions among older adults include anxiety, severe cognitive impairment such as dementia, and mood disorders such as depression or bipolar disorder. In addition, people with disabilities can experience serious psychological distress, making it harder for them to participate in major life activities. Substance use problems (i.e., alcohol and drug abuse) frequently accompany mental health conditions in older adults. Approximately 1 million Americans aged 60 or older have a substance abuse problem (National Institute on Drug Abuse 2020). Substance abuse problems may increase as more members of the baby boom generation—a generation associated with greater acceptance of substance use—enter retirement.

behavioral health The field of healthcare dealing with mental health and behavior.

Disabilities and Limiting Health Conditions

Approximately 1 in 4 people in the US have a disability. Studies have found that people with disabilities are less likely to get preventive health care services they need to stay healthy (Healthy People 2030 [2021b]). Strategies to make healthcare more affordable for people with disabilities are key to improving their health. Traumatic brain injuries (TBIs) can be caused by falls, motor vehicle crashes, inten­ tional self-harm, and other preventable events. These events may affect a person’s ability to participate in life events and maintain their health status. Autism spectrum disorder (ASD) is a social communication disorder that may result in limitations in effective communication, social participation, social relationships, academic achievement, and occupational performance. Repetitive patterns of activities, behaviors, and interests are commonly associated with the condition. Intellectual disabilities may also accompany a diagnosis of ASD (Autism Speaks 2022).

autism spectrum disorder (ASD) A social communication disorder that may result in limitations in effective communication, social participation, social relationships, academic achievement, and occupational performance.

A Look Ahead The importance of implementing a formal structure for population health–based services in long-term care settings has grown along with the importance of person-centered care as a complement to new CDC and CMS health equity–based frameworks and policies. Providers need to give older adults a “social prescription” that acknowledges social determinants of health as a nondrug solution based on an older adult’s life history, individual preferences, and current abilities (Nazir and de Vilmorin 2022). These policies addressing

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population health and health equity also affect the successful management of chronic and disabling conditions, especially for individuals living independently in the community. Chronic conditions such as congestive heart failure, chronic obstructive pulmonary disease, diabetes with complications, and urinary tract infections are major causes of hospital readmissions among Medicare beneficiaries. Studies have shown that effective transitional care programs, including home care visits from multidisciplinary healthcare providers, can reduce the number of readmissions and lower the risk of nursing home admission for individuals with such conditions (Mattke et al. 2015). In the United States, COVID-19 has caused more than one million deaths and left millions of surviving patients with lingering chronic health conditions (WHO 2022). Individuals with preexisting chronic health conditions such as cardiovascular diseases, diabetes, respiratory system diseases, and renal (kidney) diseases are more susceptible to COVID-19 and have higher death rates than patients with no comorbid conditions (Alyammahi et al. 2021). COVID-19 may also be responsible for societal changes leading to challenges that can be stressful and overwhelming, which in turn may lead to increases in mental health conditions. According to one study (Panchal et al. 2021), during the pandemic, about 40 percent of US adults reported symptoms of anxiety and depressive disorder. The pandemic also disproportionately affected communities of color, with non-Hispanic Black adults (48 percent) and Hispanic/Latino adults (46 percent) more likely to report symptoms of anxiety or depressive disorder than non-Hispanic white adults (41 percent). Both new and seasoned administrators must stay current with the ever-changing field of population health and management of chronic health conditions. They must be prepared to provide effective services and adhere to insurance and governmental standards to maintain their communities’ licenses and certifications. Administrators and staff must remain knowledgeable about new discoveries in the treatment of chronic health conditions, such as new medications, diagnostic innovations, and creative systems of interventions to improve care.

F o r D i s c u ss i o n 1. Briefly describe the concept of population health and the four pillars of population health. How does population health differ from public health? 2. What is Healthy People 2030, and how do older adults and people with disabilities benefit from this framework? 3. What is wellness, and why is it helpful to integrate wellness activities into care plans for older adults and people with disabling conditions? 4. Why is it important for an administrator to have an understanding of chronic conditions that occur in their clients or residents? 5. Explain the connection between chronic health conditions and frailty in older adults. What are some chronic conditions that can lead to hospital readmissions?

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6. Describe the interaction of behavioral health diagnoses and substance use problems. 7. What health issues might individuals with intellectual disabilities face as they grow older? 8. Why are older adults often less aware of HIV risk factors than younger adults? 9. Why is it important to screen older adults for vision and hearing problems? 10. Which chronic conditions can lead to high rates of disability and reductions in quality of life, and why?

Case Study: Structure S u s ta i n a b i l i t y

and

Governance

for

Keith Jennings Dale Jones is the CEO of Whitefield Health System (WHS); Susan Hernandez is the director of the local public health department (LHD) for the region; and Shay Zodpey is the head of the Positive Response Initiative (PRI), a local organization committed to fighting HIV/AIDS. The three are meeting for coffee to discuss how to approach a new problem—the sudden re-emergence of HIV in their community. Community institutions had worked together in the preceding decades to control HIV and to help people living with HIV or AIDS manage their condition. The three leaders now agree that they need to reinvigorate the community collaboration of the past and develop an infrastructure that can sustain community efforts to prevent and manage HIV/AIDS into the future.

Background

Today, two trends are fueling a resurgence of HIV/AIDS in communities throughout the United States. The first is a rise in injection drug use (IDU). The second is the arrival of a younger generation that is less likely to get tested for HIV (Howard 2018). If the past is an indication of the future, health system and other community health leaders must pro­ actively evaluate the ever-changing scientific and cultural shifts surrounding HIV/AIDS and strategically adapt their collective response accordingly. Chronic, complex conditions such as HIV/AIDS require collaboration across mul­ tiple health and social service agencies. An HIV/AIDS resurgence will require a commu­ nity effort and an adaptive approach. The art of structuring and managing collaborative relationships is an essential management competency, though it often goes unrecognized. Jones, Hernandez, and Zodpey will have to continually evaluate HIV/AIDS’s changing landscape and respond in sustainable ways to drive measurable impact. Managerial epidemiology—the science of managing health services based on the changing health conditions of a community—has become increasingly important for health

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and social service organizations, and it will be essential for addressing the resurgence of HIV/AIDS. Healthcare executives need to closely monitor community health status to tailor their services to individuals and the community, maximize the use of resources, and improve financial performance. Another key aspect of managing HIV/AIDS is care coordination, or case manage­ ment. Care coordination refers to assistance provided to individuals to help them access the various clinical and support services they need. Information systems to facilitate coordina­ tion of care and to document services provided by multiple organizations and professionals remain scarce, but they are increasingly regarded as essential for the efficient provision of care and success in value-based payment. Systems for managing HIV/AIDS require that health and social services, managerial epidemiology, and care coordination be pulled together. The challenge facing Jones, Her­ nandez, and Zodpey is how to create cross-entity partnerships that will incorporate these elements and enable the community to effectively battle HIV/AIDS on an ongoing basis. HIV/AIDS R e e m e r g e n c e

A staff member in the local public health department responsible for maintaining the infec­ tious disease registry had become concerned that the number of HIV cases in Whitefield’s three-county region was increasing. After investigating patient records, the epidemiolo­ gists of the public health department determined that IDU was the root cause of about 80 percent of the new HIV cases. [Root cause analysis is explained in chapter 16.] All the patients who reported IDU identified oxymorphone as their drug of choice. Public health nurses and staff from agencies affiliated with PRI questioned patients about partners who might have been exposed through syringe sharing, sexual encounters, or other high-risk activities, and local public health teams tried to locate and test any indi­ viduals named. About two-thirds of those potentially exposed individuals were located and tested; about one-third declined or were unable to be tested. Another key factor in controlling the HIV upsurge was the implementation of a needle exchange program (also known as syringe access). Providers caring for people with HIV discovered that IDU practices centered around crushing, cooking, and then injecting oxymorphone tablets. Drug preparation equipment and insulin syringes were frequently shared, with the number of injection partners being as high as six per injection event. In the wake of the renewed HIV/AIDS threat, teams participating in local prevention and treatment efforts must find new ways to manage the spread of HIV, while also improv­ ing the quality of life for people infected and at risk. At the same time, community health leaders and partners must evaluate whether their respective investments through funding, staffing, and other resource contributions are creating enough value to justify continued investment. Furthermore, they must determine what moral and ethical roles they play in serving populations that bear a disproportionate share of the burden of HIV’s spread.

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Community Overview

The area is predominantly rural with two suburban pockets, with a total population of 211,500. Median household income ranges from a high of $57,300 in the largest county to $39,400 in the smallest. Less than 15 percent of residents have a college degree. The primary mode of HIV transmission in the region has been men having sex with men (61.5 percent of cases), followed by heterosexual contact (27.1 percent) and IDU (7.5 percent). Patients are most often male, and newly diagnosed patients are most often aged 29 or younger. However, like many areas of the country, the region is facing a significant increase in IDU. Services for high-risk populations are matrixed across the five service lines. Efforts targeted at particular high-risk groups include the following: (1) the substance-use population; (2) the population of men who have sex with men (MSM); (3) the Latino population. .

About WHS

Whitefield Health System has a 250-bed inpatient facility and three clinics in outlying rural areas. Care for patients with HIV/AIDS is an important responsibility for WHS but also a financial burden. These patients typically consume considerable resources, often are uninsured, and frequently fall into the hospital’s community benefit contribution for uncompensated care. Reducing the burden of HIV/AIDS in the community is of great interest to WHS, both for the sake of people’s well-being and for its own bottom line. However, one challenge with making HIV/AIDS a priority is that the community health needs assessment (CHNA) and WHS’s own patient records show that the region’s top healthcare problems are heart conditions, cancer, stroke, and dementia. About the LHD

The majority of state public health efforts are spearheaded by government agencies and the state university, based in the state capital—which is 200 miles away from the region served by this LHD. The state does not maintain an extensive budget for public health. In terms of visibility, power, and public health funding, the area of the state served by this LHD typically plays second fiddle to other areas. The LHD has assumed responsibility for leading the CHNA for the two counties it covers, as required by the Public Health Accreditation Board for LHD accreditation. This effort also satisfies the hospital’s requirement to complete a CHNA every three years to qualify for tax-exempt status. About PRI

PRI was formed as a collaboration between WHS and the local Public Health Nursing Asso­ ciation, and it received initial funding from the state health department. From its inception,

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PRI has had three primary objectives: (1) to offer patients dignity and self-determination, (2) to connect them with care options, and (3) to provide the highest quality of life pos­ sible. PRI is a portfolio of five service lines of programs and funding—(1) prevention, (2) basic needs, (3) medical needs, (4) support groups, and (5) giving back—bound together by a mission to provide preventive and prescriptive HIV services. Each of PRI’s five core service lines is critical in responding to the HIV/AIDS resurgence and managing patients’ journey to long-term health and quality of life. None of the service lines is offered by PRI alone; all require PRI to coordinate with other organizations in the community. WHS is one of PRI’s key partners. PRI teams, which are actively present at partner locations in the region, provide education and testing, with the goals of increasing public knowledge of HIV risk reduction, ensuring early disease identification, and decreasing risk behaviors among high-risk individuals who have tested negative. Social and Medical Needs

Housing, food, transportation, translation/communication, and insurance are essential elements in ensuring that newly diagnosed HIV patients can and will follow through with their treatment plan. Social and education sessions for people who are HIV-positive create a support system that incentivizes care compliance, helps prevent relapse, restores family relationships, and provides a foundation for employment. PRI also supports patients and the community through local partnerships with infectious disease physicians, nutritional support services, translation services, low-income housing providers, immigration coun­ selors, and support groups. Through contractual community partnerships, PRI works to make sure patients have the ability to maintain their treatment regimen. Ideally, patients should also have access to medications, side-effects management, and individual and group therapy. PRI collaborates with area physicians, therapists, pharmacists, clinics, dentists, and other care teams to ensure continuity of care. As new clinical advances occur relevant to HIV/AIDS, all involved must be educated about the impact of those advances on the prevention, diagnosis, and treatment of the condition, and processes and procedures must be changed accordingly. Constant communication among all parties is essential. Funding and Internal Operations

PRI funding comes from a complex mix of sources. Grants, fee-for-service payment, and other revenue aimed at prevention come from the Centers for Disease Control and Pre­ vention (CDC), the Substance Abuse and Mental Health Services Administration, WHS, and private foundations. Funding for client services comes from the federal Department

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of Housing and Urban Development, the state’s Department of Health, WHS, and private foundations. A key to PRI’s effectiveness has been evolving its approach to partnerships within the communities it serves. PRI maintains rigorous evaluation, with metrics divided into three macro segments: HIV prevention, early intervention, and patient health. Together, the metrics provide partners with real-time intelligence on the spread of HIV, as well as the effectiveness of PRI programs in improving the quality of life of HIV-positive patients. Community-based HIV prevention and management are based on breadth and depth of collaborative partnerships, both formal and informal, with services throughout the region. Workforce experience and expertise can have a significant impact on sustainability as well. Plan

of

Action

Jones, Hernandez, and Zodpey draft a plan of action that includes a vision statement, a short list of overarching long-term goals, and key tasks to be accomplished in the short term. The leaders will now share the plan with their respective boards. They have agreed to return in two weeks to implement revisions from the boards and then proceed to the development of a more detailed plan. They have also agreed on the following underlying assumptions to serve as guiding principles for their work: 1. HIV/AIDS prevention and treatment must be a community-wide effort. 2. Numerous organizations must be involved as formal partners and commit to achieving specific community-level goals. The principles of identifying and managing partnerships must be properly employed; random arrangements created by informal agreements between staff do not lead to sustainability over time. 3. Leadership is essential. For the Whitefield region, WHS, the LHD, and PRI will be cochampions. Their partnership agreement must be particularly strong. 4. Development of a crisp vision that can be understood and accepted by lay persons as well as professionals is an essential first step. 5. A work plan will be developed using SMART objectives and detailed tasks, responsibilities, time frames, and resources (Doran 1981). [SMART stands for specific, measurable, achievable, realistic, and time bound. SMART goals are discussed in chapter 10.]

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6. An evaluation, with process and outcomes measures, will be agreed on, and responsibility for and attribution of success will be shared by all partners. 7. A multifaceted, multimedia communications plan is an integral part of the service plan. 8. Financing must be incorporated into ongoing operations, not dependent on external grants or onetime awards. The three leaders agree to appoint one staff member to spearhead the plan for each organi­ zation, and these three appointees will be the team responsible for delineating how other entities and the community will be involved. You have been appointed as one of the three members of the team. What are your next steps? What will you put in place to share with the board?

Case Study Questions 1. What are the roles of the state and local public health departments in monitoring infectious diseases? What are their roles for chronic conditions? 2. What are the economics of HIV/AIDS programming for WHS? Does the health system make or lose money by participating in a community-wide effort to reduce HIV/ AIDS? 3. What is care coordination? What mechanisms might PRI and WHS use to coordinate the care for a single individual client? How is care coordination related to institutional partnerships, if at all? 4. How, if at all, does addressing HIV/AIDS at a community level vary from addressing the subpopulations most affected? Differentiate messages, interventions, and outcome measures for programming at a community level from those for programming for the subpopulations at high risk of HIV/AIDS. 5. If a vaccine for HIV/AIDS is developed and becomes widely available at an affordable price, how will the activities of PRI change? Source: Case study adapted from Evashwick and Turner (2020).

References Alyammahi, S. K., S. M. Abdin, D. W. Alhamad, S. M. Elgendy, A. T. Altell, and H. A. Omar. 2021. “The Dynamic Association Between COVID-19 and Chronic Disorders: An Updated Insight into Prevalence, Mechanisms, and Therapeutic Modalities.” Infection, Genetics, and Evolution 87 (January): article 104647. https://doi.org/10.1016/j.meegid.2020.104647.

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Alzheimer’s Association. 2022. 2022 Alzheimer’s Disease Facts and Figures. Chicago: Alzheimer’s Association. www.alz.org/media/documents/alzheimers-facts-and-figures.pdf. American Cancer Society. 2022. Cancer Facts & Figures 2022. Atlanta, GA: American Cancer Society. www.cancer.org/content/dam/cancer-org/research/cancer-facts-and-statistics/ annual-cancer-facts-and-figures/2022/2022-cancer-facts-and-figures.pdf. Autism Speaks. 2022. “DSM-5 Diagnostic Criteria.” Accessed June 18. www.autismspeaks. org/what-autism/diagnosis/dsm-5-diagnostic-criteria. Boersma, P., L. I. Black, and B. W. Ward. 2020. “Prevalence of Multiple Chronic Conditions Among Older Adults, 2018.” Research brief. Preventing Chronic Disease 17: article 201130. http://dx.doi.org/10.5888/pcd17.200130. Caron, R. 2022. Population Health, Epidemiology, and Public Health, 2nd ed. Chicago: Health Administration Press. Centers for Disease Control and Prevention (CDC). 2022a. “Health and Economic Costs of Chronic Diseases.” Reviewed June 6. www.cdc.gov/chronicdisease/about/costs/index. htm. ———. 2022b. “HIV in the United States by Age.” Reviewed June 28. www.cdc.gov/hiv/ group/age/index.html. ———. 2022c. “Hypertension.” National Center for Health Statistics. Reviewed April 20. www.cdc.gov/nchs/fastats/hypertension.htm. ———. 2022d. “National Diabetes Statistics Report.” Reviewed January 18. www.cdc.gov/ diabetes/data/statistics-report/index.html. ———. 2021a. “About Social Determinants of Health (SDOH).” Reviewed March 10. www. cdc.gov/socialdeterminants/about.html. ———. 2021b. “Arthritis Data and Statistics: Disabilities and Limitations.” Reviewed October 12. www.cdc.gov/arthritis/data_statistics/disabilities-limitations.htm.

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———. 2021a. “Older Adults.” Office of Disease Prevention and Health Promotion, US Department of Health and Human Services. Accessed February 11. https://health.gov/ healthypeople/objectives-and-data/browse-objectives/older-adults. ———. 2021b. “People with Disabilities.” Office of Disease Prevention and Health Promotion, US Department of Health and Human Services. Accessed February 11. https:// health.gov/healthypeople/objectives-and-data/browse-objectives/people-disabilities. Howard, J. 2018. “Fewer Young Adults Getting HIV Tests, Here’s Why.” CNN. Published January 25. www.cnn.com/2018/01/25/health/hiv-testing-trends-cdc-study/index.html. Institute for Healthcare Improvement. 2022. “The IHI Triple Aim Initiative.” Accessed May 19. www.ihi.org/Engage/Initiatives/TripleAim/Pages/default.aspx. Johns Hopkins Medicine. 2022. “The Impact of Demyelinating Diseases.” Accessed June 18. www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/project_restore/ conditions/. Kobrin, M. 2022. “Promoting Wellness for Better Behavioral and Physical Health.” Substance Abuse and Mental Health Services Administration (SAMHSA). Accessed August 22. https://mfpcc.samhsa.gov/ENewsArticles/Article12b_2017.aspx. Mattke, S., D. Han, A. Wilks, and E. Sloss. 2015. “Medicare Home Visit Program Associated with Fewer Hospital and Nursing Home Admissions, Increased Office Visits.” Health Affairs 34 (12): 2138–46. Nash, D. 2012. The Population Health Mandate: A Broader Approach to Care Delivery. Governance Institute. Published February. http://populationhealthcolloquium.com/readings/Pop_Health_Mandate_NASH_2012.pdf. National Council on Aging (NCOA). 2021. “Get the Facts on Healthy Aging.” Published January 1. www.ncoa.org/article/get-the-facts-on-healthy-aging. National Healthcare Safety Network. 2022. Urinary Tract Infection (Catheter-Associated Urinary Tract Infection [CAUTI] and Non-Catheter-Associated Urinary Tract Infection [UTI]) Events. Published January. www.cdc.gov/nhsn/pdfs/pscmanual/7psccauticurrent.pdf. Copying and distribution of this PDF is prohibited without written permission. For permission, please contact Copyright Clearance Center at www.copyright.com.

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National Institute on Deafness and Other Communication Disorders. 2021. “Quick Statistics About Hearing.” Updated March 25. www.nidcd.nih.gov/health/statistics/ quick-statistics-hearing. National Institute on Drug Abuse (NIDA). 2020. “Substance Use in Older Adults DrugFacts.”

Published

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https://nida.nih.gov/publications/drugfacts/

substance-use-in-older-adults-drugfacts. National Institutes of Health. 2016. “Falls and Older Adults.” NIH Senior Health. Accessed March 24. http://nihseniorhealth.gov/falls/aboutfalls/01.html (content no longer available). Nazir, A., and C. de Vilmorin. 2022. “Resident Well-Being: Is the Prescription Pad Enough?” McKnight’s Long-Term Care News. Published July 26. www.mcknights.com/marketplace/ marketplace-experts/resident-well-being-is-the-prescription-pad-enough/. Panchal, N., R. Kamal, C. Cox, and R. Garfield. 2021. The Implications of COVID19 for Mental Health and Substance Use. Kaiser Family Foundation Issue Brief. Published February 10. www.kff.org/coronavirus-covid-19/issue-brief/ the-implications-of-covid-19-for-mental-health-and-substance-use/. Power, G. A. 2017. Dementia Beyond Drugs: Changing the Culture of Care, 2nd. ed. Baltimore, MD: Health Professions Press. Stiefel, M., and K. Nolan. 2012. A Guide to Measuring the Triple Aim: Population Health, Experience of Care, and Per Capita Cost. IHI Innovation Series white paper. Cambridge, MA: Institute for Healthcare Improvement. https://nhchc.org/wp-content/uploads/2019/08/ ihiguidetomeasuringtripleaimwhitepaper2012.pdf. Substance Abuse and Mental Health Services Administration (SAMHSA). 2019. Older Adults Living with Serious Mental Illness: The State of the Behavioral Health Workforce. Rockville, MD: SAMHSA. https://store.samhsa.gov/sites/default/files/d7/priv/pep19-olderadults-smi.pdf. University of Wisconsin Public Health Institute. 2022. “Explore the County Health Rankings Model.” Accessed September 1. www.countyhealthrankings.org/explore-health-rankings/ measures-data-sources/county-health-rankings-model. Copying and distribution of this PDF is prohibited without written permission. For permission, please contact Copyright Clearance Center at www.copyright.com.

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Wake, W. T. 2010. “Pressure Ulcers: What Clinicians Need to Know.” Permanente Journal 14 (2): 56–60. Weiss, C. O. 2011. “Frailty and Chronic Diseases in Older Adults.” Clinics in Geriatric Medicine 27 (1): 39–52. World Health Organization (WHO). 2022. Updated July 15. “WHO Coronavirus (COVID-19) Dashboard: United States.” https://covid19.who.int/region/amro/country/us. ———. 2021. “Noncommunicable Diseases.” Published April 13. www.who.int/news-room/ fact-sheets/detail/noncommunicable-diseases. ———. 2017. “Mental Health of Older Adults.” Published December 12. www.who.int/en/ news-room/fact-sheets/detail/mental-health-of-older-adults.

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CHAPTER 8

DIVERSITY AND THE DELIVERY OF LONG-TERM CARE SERVICES Carol Molinari, PhD, and Emiko Takagi, PhD

Learning Objectives After studying this chapter, you should be able to ➤➤ Discuss demographic diversity (i.e. race, ethnicity, gender, and sexual orientation), of older adults; ➤➤ Examine the influence of socioeconomic factors (income, marital status) on the long-term health needs of diverse older adults; ➤➤ Explain health disparities among older diverse adults; ➤➤ Explore differences in use of long-term care by diverse older adults; and ➤➤ Discuss the growing need for culturally competent long-term care providers and staff to serve diverse older adults.

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By 2018, the proportion of older adults (aged 65 or older) in the US population had increased by more than a third (35 percent)—from 38.8 million in 2008 to 52.4 million in 2018—and was projected to increase to 94.7 million in 2060, according to the Centers for Medicare & Medicaid Services (CMS 2020). The growth of the older adult population in the United States parallels increases in the diversity of its population. The proportion of white, non-Hispanic older adults has been projected to increase by 32 percent from 2018 to 2040; in contrast, other older racial and ethnic populations on average have been projected to increase by 125 percent during this period (CMS 2020). Specifically, populations of older adults classified by the federal government as Hispanics have been projected to increase by 175 percent, non-Hispanic African Americans by 88 percent, American Indians and Alaska Natives (non-Hispanic) by 75 percent, and Asians by 113 percent (CMS 2020). In addition, older minority groups characterized in other ways are gaining recognition, including those who identify as lesbian, gay, bisexual, transgender, or queer (LGBTQ). Although the general health of older adults in the twenty-first century is improving, studies have found that those in minority groups are less likely to receive routine medical care and that the care they receive is of poorer quality than that received by non-Hispanic whites (Baldwin 2003). In 2002, the Institute of Medicine issued a report, titled Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care, confirming that inequities based on race, gender, socioeconomic status, or a combination of these characteristics exist in medical screening, treatment, and outcomes across common chronic diseases such as cancer, diabetes, heart disease, and HIV/AIDS (Gehlert et al. 2008; Smedley, Stith, and Nelson 2003). The World Health Organization (WHO 2021) defines disability as the interaction between individuals with a health condition (physical or mental) and personal and environmental factors that can include negative attitudes, limited social supports, and inaccessible resources. Given that disability is a natural part of being human and aging, studies indicate racial differences in disability for older adults. Stamm and colleagues (2019) found that older Black adults with stroke and dementia have greater disability in terms of activities of daily living (ADLs) than white older adults. (Recall from chapter 1 that ADLs are defined as basic and routine daily activities such as eating, bathing, dressing, toileting, and walking.) Similarly, non-Hispanic Black older adults had more disability from knee osteoarthritis than non-Hispanic white older adults (Booker et al. 2019). Given these disparities, the health and functionality of older adults in racial and ethnic minority groups are lower, a factor that increases the likelihood that they will need help with ADLs. A 2021 AARP report on aging indicates that 28 percent of Black older men and 39 percent of Black older women rely on caregivers as they age in place. On average, Black older adults needed help with five ADLs, compared with only one ADL for white older adults (Hado and Flinn 2021). This chapter provides an overview of the cultural needs and health care disparities among diverse populations of older adults, with the aim of promoting the

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knowledge and understanding needed for cultural competence. The chapter also offers information to help managers and providers ensure that their residential and home and community-based services are equipped and prepared to serve the needs of these diverse populations.

W h at diversity The variation in cultural, personal, and lifestyle attributes of individuals. A diverse group includes people who differ in race and ethnicity, age, sexual orientation, socioeconomic status, and other attributes.

is

D i v e r s it y ?

Diversity is the variation in cultural, personal, and lifestyle attributes that can be observed among a group of individuals. A diverse group of people, for example, could include men and women of all ages, racial and ethnic backgrounds, sexual orientations, income and educational levels, religious affiliations, political views, marital statuses, and physical and mental capacities (Betancourt et al. 2005). This chapter primarily focuses on diversity among the older population in terms of race and ethnicity, gender, and sexual orientation. For the purposes of our discussion, the term diverse elders refer to older adults who represent minority groups. See the accompanying Critical Concept sidebar “Defining Diversity” for definitions of other key terms used in this chapter.

CRITICAL CONCEPT Defining Diversity

To better frame this chapter’s discussion, a few brief definitions are necessary: • Race has multiple meanings. It is often use to indicate shared physical characteristics, such as skin and hair color, facial shape, and even height (Relethford 1990). It is also used to refer to socioeconomic conditions and cultural behavior (Smedley and Smedley 2005) • Ethnicity is a cultural identity shared by a group of individuals who recognize commonality in regard to beliefs, traditions, religion, national origin, and language (Mehrotra and Wagner 2008). • Gender refers to the “socially constructed roles, behaviors, activities, and attributes that a given society considers appropriate for men and women” (WHO 2016). On the other hand, sex often refers to the biological and physiological attributes associated with men and women (WHO 2016). Sexual orientation refers to a person’s sexual identity and gender identity (Morgan et al. 2020). Examples of typical responses to define sexual orientation include straight, lesbian/gay, bisexual; or male, female, transgender (Morgan et al. 2020).

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Measures used to identify these personal characteristics are evolving to include more categories to help individuals who are completing surveys by providing them with options that more accurately reflect these personal attributes.

H i s t o ry

of

R e s e a rc h

on

D iverse E lders

In 1971, diverse elders were recognized as a significant group within the field of gerontology (the scientific study of aging from a biopsychosocial and spiritual perspective, including how individuals, communities, and societies age). Concomitantly, the National Caucus and Center on the Black Aged was established. Afterward, the National Association for Hispanic Elderly, the National Indian Council on Aging, the National Asian Pacific Center on Aging, and the Southeast Asia Resource Action Center were formed, spurring research on elder populations of color. The first advocacy group for LGBTQ older adults, Services and Advocacy for GLBT Elders (SAGE), was established in New York City in 1978. Initially, SAGE was run by just a few activists. Since the 1990s, however, the organization has become nationally known, providing social services to LGBTQ older adults in need, leading production of research reports, and operating dozens of affiliates throughout the country. In 2016. The Office of Management and Budget’s Federal Interagency Working Group on Improving Measurement of Sexual Orientation and Gender Identity in Federal Surveys (IWG) developed three papers to address the scarcity of data related to sexual and gender minority populations (IWG 2016a, 2016b, 2016c). In 2010, the various organizations promoting the interests of minority groups’ older adults formed the Diverse Elders Coalition (DEC 2022). The DEC recognizes the common needs of vulnerable elders and aims to represent them as a unified group, advocating federal policies to benefit diverse elders. The DEC also leads national studies to promote better understanding of the unique issues and problems faced by minority groups’ older adults. The US Census Bureau is the primary source of demographic information about racial and ethnic minority elders. To address past problems with misclassification of data about nonwhite groups (which had led to the undercounting of minority groups), the Census Bureau in 1997 expanded the race category list to include the following: ◆◆ American Indian or Alaska Native ◆◆ Asian ◆◆ Black or African American ◆◆ Native Hawaiian or Other Pacific Islander ◆◆ White ◆◆ Some Other Race

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People who complete the census may check off one or more races or write in their racial identity. For ethnicity, the census asks whether people identify themselves as having Hispanic, Latino, or Spanish origin. If so, they have an option of specifying their country of origin. People who claim Hispanic ethnicity can be of any race. The terms Hispanic and Latino refer to people who were born or have cultural origins in Mexico, Puerto Rico, Cuba, countries in Central and South America, or other countries with historical ties to Spain. This ethnic group shares a common language (Spanish) but is diverse in terms of race, geographic location, income, education, and cultural heritage. In the 2020 US census, race and ethnicity were combined in ways that resulted in more categories; there were 15 separate categories along with five areas in which respondents could write in information related to their race (N. Jones et al. 2021). Information on the Hispanic or Latino population was based on answers to a question on Hispanic origin that included three possible checkboxes: one to check if Mexican, Puerto Rican, or Cuban; one to check to indicate another Hispanic, Latino, or Spanish origin; and one followed by a write-in area for additional origins if needed. These checkboxes provided response options that captured the diversity of this Hispanic or Latino category. During the 1970s and 1980s, national studies of minority populations suffered from small, nonrepresentative samples, and they were often restricted to comparisons of Blacks and whites. The most recent national data related to older Americans are compiled by the Administration on Aging (AoA), part of the Administration for Community Living (ACL), an operating division of the US Department of Health and Human Services. The Profile of Older Americans is the annual summary of these data (ACL 2021a). Principal sources of data are the US Census Bureau, the National Center for Health Statistics, and the Bureau of Labor Statistics. Until the 2010s, there were virtually no comprehensive studies focused on LGBTQ older adults. However, research methodology has improved, and studies of older adults have emerged that include sexual orientation, especially in relation to such sociodemographic characteristics as marital status, living arrangement, income, and education. Examining the intersections of race, ethnicity, gender, and sexual orientation with sociodemographic characteristics for older adults provides a broad lens that captures the complexity of older adults’ experience and behaviors and how these contribute to older adults’ health and healthcare.

S e l e ct e d D e m o g raphics

of

O lder A dults

Americans aged 65 or older are not a homogeneous population. Disparities in health status and disability within this age group can best be understood through an examination of the conditions in which individuals are born, grow, live, work, and age (ACL 2021b). Environmental factors that include social networks and support along with individual characteristics that include race/ethnicity, gender, and LGBTQ identity, and the sociodemographic characteristics of marital status, income, and education are key to explaining heath disparities for older adults.

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R a c e /E t h n i c i t y

Racial and ethnic minority populations continue to represent a growing proportion of the US older population. As shown in exhibit 8.1, from 2017 to 2060, the non-Hispanic white population aged 65 or older has been projected to decrease by 40 percent. Based on 2019 census data and a current population survey that combined race and ethnicity (ACL 2021b), older adults in racial and ethnic categories other than non-Hispanic white account for 24 percent of older Americans, in contrast to 20 percent in 2009. Projections for older adults in 2040 indicate that the Hispanic population will increase the most (by 161 percent), followed by non-Hispanic Asian American (by 102 percent), non-Hispanic African American (by 80 percent), and non-Hispanic American Indian or Alaska Native (by 67 percent). It is important to note that US census data indicate growing racial and ethnic diversity among older adults. The Asian American and Pacific Islander (AAPI) racial group is itself highly diverse, with a large number of distinct cultural groups that speak a multitude of languages (Initiative on Asian Americans and Pacific Islanders 2016). In 2019, the category Native Hawaiian and Other Pacific Islander (not Hispanic) accounted for 10 percent of older adults (ACL 2021b). Many Asians belong to one of six main groups: Chinese, ­Filipino, Indian, Vietnamese, Korean, or Japanese. The rest have origins in countries of South Asia, including Pakistan and Bangladesh (Yoo et al. 2015). In 2019, non-Hispanic Asian

1

4 8 9

2

5

3

Other* 8

11 10

21

Asian Alone* Hispanic/Latino Black Alone* White Alone*

13

77

EXHIBIT 8.1 Distribution of Americans Aged 65 or Older by Race and Ethnicity in 2017, 2030, and 2060

72 55

2017

2030

2060

Note: 2017 population projections. An asterisk denotes non-Hispanic. Source: US Census Bureau (2018).

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Americans represented 13 percent of older adults (ACL 2021b). Older AAPIs are a fastgrowing group, and they have long life spans. Adding to the AAPIs’ diversity is the ongoing immigration to the United States of older Asians whose children and grandchildren are also immigrants. Cultural backgrounds and immigration histories are tremendously diverse among this population. For many older AAPIs, language limitations and cultural practices serve as barriers to accessing healthcare and long-term care services. Gender

Because women on average have a longer life expectancy than men, women make up the majority of the population aged 65 or older. In 2019, older women (30 million) significantly outnumbered older men (24.1 million), a ratio that can be translated as about 125 older women for every 100 older men (ACL 2021b). LGBTQ I d e n t i t y

When examining the concept of aging families in the United States, the issues of LGBTQ elders must be addressed. Approximately 3.5 percent of US adults identify as lesbian, gay, or bisexual, and about 25 percent of same-sex relationships includes a partner who is aged 55 or older (Gates 2011; Lambert 2005). Older Americans are becoming more diverse in terms of sexuality and gender. According to a 2021 Gallup poll (J. Jones 2022), 7.1 percent of American adults identify as LGBT, which is double the percentage from 2012. LGBT identification in older adult categories that include “traditionalists” (those born in 1945 or earlier) and baby boomers (born 1946–1964) has remained stable over this period, with 0.8 percent of traditionalists and 2.6 of baby boomers identifying as LGBT. The poll revealed that successively younger generations have higher proportions of LGBT identification: 4.2 percent for generation X (born 1965–1980), 10.5 percent for millennials, also known as generation Y (born 1981–1996), and 20.8 percent of generation Z (born 1997–2003). M a r i ta l S tat u s

More older men are married than older women. In 2019, 69 percent of older men were married, compared with 47 percent of older women (CMS 2020). There were three times as many widows as widowers in 2019, and widows represent almost a third (31 percent) of all older women (CMS 2020). Divorced and separated older adults accounted for 15 percent of all older individuals in 2019; however, the proportion of divorced and separated older adults has tripled since 1980, when that segment of the population was 5 percent (CMS 2020).

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In 2020, among 33 million older adults living in a community, 61 percent of those aged 65 or older lived with their spouse or partner: 73 percent of men and 50 percent of women (ACL 2021b). In contrast, a relatively small number of older adults (1.2 million) lived in nursing homes in 2019 (ACL 2021b). In 2020, 27 percent of older adults lived alone: 9.7 million women and 5 million men (ACL 2021b). The majority of lesbians and gays have been part of a couple, even a family, at some time in life. In old age, however, many have been estranged from their biological families. As a result, LGBTQ older adults are twice as likely to live alone, twice as likely to be single, and three to four times less likely to have children (Espinoza 2014; Movement Advancement Project, Services and Advocacy for GLBT Elders, and Center for American Progress 2010). Such conditions can add to feelings of being alone and lacking a support system. Income

Being able to meet financial obligations affects one’s present and future financial security, thus income is an important component of older adults’ health and well-being. Income is reported for an individual and for a household. Of the 52.8 million older adults reporting annual income in 2019, 55 percent reported $25,000 or more, and 12 percent reported $10,000 or less (ACL 2021b). The median income of all households headed by persons aged 65 or older was $70,254 in 2019 (ACL 2021b). The 2019 median income for households varied by race and ethnicity: $74,235 for non-Hispanic white, $50,553 for Hispanic, $51,743 for non-Hispanic African American, and $76,235 for non-Hispanic Asian American (ACL 2021b). E d u c at i o n

Older adults are more educated than in the past. The level of education among older persons has been increasing. Between 1970 and 2020, there was a marked increase in the percentage of older adults who had completed high school, from 28 percent in 1970 to 89 percent in 2019 (ACL 2021b). Nearly a third (31 percent) of older adults in 2020 had earned a bachelor’s degree or higher. While educational levels increased for all older adults, there were differences in the level of increase by racial and ethnic category. In 2020, the percentages of older persons who had completed high school were 93 percent for white, 83 percent for Asian American, 81 percent for African American, 79 percent for American Indian or Alaska Native, and 63 percent for Hispanic of any race (ACL 2021b). In 2020, the percentages of older persons who had earned a bachelor’s degree were 43 percent for Asian, 35 percent for white, 22 percent for African American, 21 percent for American Indian or Alaska Native, and 18 percent for Hispanic of any race (ACL 2021b).

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H e a lt h D i s pa ri t i e s A mong S electe d O lder A dults E t h n ic i t y a nd L g btq I dentity

by

Obesity is a serious concern for older adults and is a major cause of premature and preventable disease and death (CMS 2020). The obesity level for all adults increased from 30.5 percent in 2000 to 41.9 percent in 2020, and the prevalence of obesity among adults aged 60 or older was 41.5 percent in 2020, according to the US Centers for Disease Control and Prevention (CDC 2022). Obese persons are at increased risk for multiple serious diseases and conditions such as hypertension (high blood pressure), hyperlipidemia (high cholesterol), diabetes, heart disease, stroke, gall bladder disease, osteoarthritis, sleep apnea, other breathing problems, body pain, and mental illnesses including depression and anxiety (Stierman et al. 2021). Most older adults have at least one chronic health condition (a health condition lasting for a year or longer that requires ongoing medical attention and can limit an individual’s activities of daily living, or both). Among those that pose the greatest risk, heart disease and diabetes are the leading chronic health conditions. In 2016 and 2017, heart disease and diabetes each affected 28 percent of older adults; cancer affected 19 percent; and stroke affected 9 percent (CMS 2020). Although less life-threatening, arthritis affects more than half of older adults (54 percent), and they must find ways to manage that chronic health condition (CMS 2020). In 2018, nearly half of those aged 75 or older reported having difficulty with some aspect of physical functioning, ranging from 5 percent having difficulty with sitting to 33 percent having difficulty with standing (CMS 2020). The increase in numbers of older Americans from ethnic minority groups has led to heightened interest in health differences among ethnically and racially diverse elders. Although past research centered on health disadvantages of African American older adults, growing attention is being directed toward the health of the older Hispanic/Latino population, which constitutes the largest proportion of nonwhite older adults. In this section we will discuss the Hispanic/Latino ethnic group as well as the American Indian or Alaska Native (AI/AN) ethnic group, which generally has the poorest health of all Americans. We will then examine how LGBTQ identity affects the health of the older members of that community. H e a lt h A m o n g O l d e r H i s pa n i c s /L at i n o s

Life expectancies for Hispanic older adults are somewhat higher than for non-Hispanic white older adults in the United States (ACL 2021b). Heart disease, cancer, stroke, diabetes, and Alzheimer’s disease are leading causes of death for older Hispanics (ACL 2021b). However, Hispanics do have some underlying health conditions and risk factors that significantly affect their health. Obesity is a major risk factor affecting the health of Hispanic Americans. In 2018, Hispanics were 1.2 times more likely to be obese than non-Hispanic whites, according to the US Department of Health and Human Services Office of Minority Health

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(OMH 2021). Obese persons are more likely to develop high blood pressure, diabetes, and high cholesterol that increase risk for heart disease and stroke (CDC 2022). Additionally, Hispanics are at high risk for asthma, chronic obstructive pulmonary disease, HIV/AIDS, suicide, and liver disease (OMH 2021). Health differences among Hispanics/Latinos may also be observed by gender, as reported for 2018 by the OMH (2021). Hispanic women, or Latinas, are at increased risk for hypertension and related heart disease. They also are more likely than Hispanic men, or Latinos, to have chronic health conditions. In 2018, 78.8 percent of Hispanic women were obese, compared with 64 percent of non-Hispanic white women. Mortality from cervical and uterine cancers is higher among Latinas than white women. Also, older Latinas experience more depression than older white women. To understand these health differences among older Latinas, one must consider their overall socioeconomic disadvantages, levels of health literacy, and patterns of health behaviors. Generally, the observed health differences tend to be reduced after controlling for the variable of socioeconomic status; however, significant ethnic differences in health remain to be explained. Uncontrolled type 2 diabetes has increased the most for older Mexican Americans as compared with older white Americans (Smalls et al. 2020). Using data from 2016 Global Burden of Disease, a study of Mexicans aged 60 or older found a greater burden of disease and disability from such chronic diseases as diabetes and ischemic heart disease compared with Mexicans aged 59 or younger (Parra-Rodríguez et al. 2020). H e a lt h A m o n g O l d e r A m e r i c a n I n d i a n P o p u l at i o n

or

A l a s k a N at i v e (AI/AN)

In 2019, the American Indian or Alaska Native (AI/AN) population made up 1.7 percent of the total US population (OMH 2021); however, the AI/AN group accounted for only 0.0017 percent of Americans aged 65 or older (ACL 2021b). Since 2010, the educational attainment for older AI/ANs has increased, with 79 percent having received a high school diploma and 33 having earned a bachelor’s degree (OMH 2021). Yet the poverty rate for older American Indians and Alaska Natives remains high. In 2019, the poverty rate for older AI/ANs was 18.7 percent, which is more than double the level of 8.9 percent for all older Americans (OMH 2021). Nearly half (48 percent) of American Indians and Alaska Natives are obese, compared with 31 percent of non-Hispanic whites (OMH 2021). American Indians and Alaska Natives have more than double the rate of smoking (27 percent) compared with non-Hispanic whites (13 percent), as well as almost double the rate of diabetes (15 percent) compared with non-Hispanic whites (OMH 2021). These factors contribute to high chronic disease rates among the AI/AN population in comparison with other racial and ethnic groups. In 2019, heart disease, cancer, accidents, diabetes, and stroke were the major causes of death for American Indians and Alaska Natives (OMH 2021). However, when compared

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with other racial and ethnic groups, American Indians and Native Alaskans have the highest rates of these chronic diseases (OMH 2021). Additionally, the tuberculosis rate was more than eight times higher for the AI/AN population as compared with the white population in 2019 (CDC 2020). This disparity raises particular concern related to American Indians’ and Alaska Natives’ high risk of death from COVID-19. Over the first decade of the twenty-first century, overall US mortality rates decreased, but the AI/AN mortality rate did not (Espey et al. 2014). Public health interventions by the Indian Health Service (IHS) have made significant progress in providing acute care and have contributed to a dramatic increase in life expectancy for younger AI/AN populations. However, the AI/AN mortality rate in 2009 was still 46 percent greater than that of nonAI/AN populations (Espey et al. 2014). Additionally, older American Indians and Alaska Natives have the highest levels of disability (OMH 2021). The poor health of the AI/AN population correlates with the group’s lower socioeconomic status. Compared with non-Hispanic whites, AI/AN persons on average achieve lower levels of education, face higher unemployment, and are more likely to be in poverty. Lower socioeconomic status, combined with a sense of cultural deprivation common among AI/ANs, limits social and economic opportunities and contributes to high stress. It also increases the likelihood of death by unintentional injury and death from major chronic health conditions and from COVID-19. Health behaviors common among AI/ANs also suggest a need for public health intervention. Smoking and excessive alcohol use are much more prevalent among AI/ANs than among non-AI/AN populations. In addition, AI/AN people tend to have limited access to healthcare services because many reside in rural areas that are a great distance from high-quality facilities. In addition, attempts by the IHS to address health needs have been hampered by a serious lack of funding (Espey et al. 2014). H e a lt h A m o n g O l d e r LGBTQ P o p u l at i o n

Older adults are often made to feel invisible in a youth-oriented society, and this invisibility is often hardest felt among older LGBTQ adults. Some researchers believe that the aging experience of LGBTQ adults is unique because of their sexual identity and orientation and because of the discrimination they have encountered (Barranti and Cohen 2000; Buchmueller et al. 2016; Butler 2006). The protection of LGBTQ adults under the law has been a relatively recent and ongoing development; not until 2003 did the US Supreme Court rule that the use of sodomy laws in some states as a basis for arresting homosexuals was unconstitutional. In 2015 the US Supreme Court’s decision in Obergefell v. Hodges mandated the constitutional right to marry for same-sex couples. Yet in the United States there are no federal-level protections against discrimination in employment, housing, and public accommodation on the basis of sexual orientation or gender identity and expression, and fewer than half of the states have state-level protections (Fredriksen Goldsen et al. 2019).

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According to the first national study on LGBTQ older adults, called Caring and Aging with Pride, 82 percent of LGBTQ older adults reported they had been discriminated against or victimized at least once in their life because of their sexual orientation (Fredriksen Goldsen et al. 2011). Such situations have contributed to LGBTQ elders’ feelings of isolation from the rest of society. Some LGBTQ elders have tried to pass as heterosexual to minimize the antagonism, and they continue to pursue this strategy when they seek health and long-term care services. Many LGBTQ elders have resorted to staying closeted. Coming out, or revealing one’s sexual orientation to family and friends, can be emotionally difficult, and it often occurs indirectly (Scherrer and Fedor 2015). In the long-term care setting, some LGBTQ elders stay closeted because they fear discriminatory treatment from their providers. This secrecy, in turn, prevents the providers from responding to the elders’ complete needs and thus reinforces the perception that the providers and the services they offer are not hospitable (Lourde 2009). Older gay men who do not share their sexual orientation with their physicians and other caregivers risk receiving misdiagnoses. For example, early signs of HIV/AIDS such as skin discolorations may be mistaken as normal signs of aging. Older lesbians who do not disclose their sexual orientation may not be screened for early stages of breast cancer or other diseases. According to the Institute of Medicine, lesbians have shown a higher risk of cervical cancer, Alzheimer’s disease, fibromyalgia, arthritis, heart disease, and hypertension (Smedley, Stith, and Nelson 2003). Additionally, older lesbians have been overlooked in much research on women’s health. The Aging with Pride: National Health, Aging and Sexuality/Gender study is the first federally funded research that examines aging among LGBTQ older Americans (Fredriksen Goldsen et al. 2019). Findings indicate high levels of poverty and education among older LGBTQ adults. Reported microaggressions by older LGBTQ adults were associated with lower quality of life and poor physical and mental health. LGBTQ older adults were more likely than heterosexual older adults to have weakened immune systems, along with low back and neck pain (Fredriksen Goldsen et al. 2017). Older LGBTQ women were more likely than heterosexual older adults to have arthritis, asthma, heart attacks, a higher number of chronic conditions, and poor health (Fredriksen Goldsen et al. 2017). Transgender older adults tend to have poorer health than lesbian, gay, and bisexual older adults. The estimated disability rate for transgender older adults is 62 percent, compared with 46 percent for nontransgender LGB older adults (Fredriksen Goldsen et al. 2014). Another area of difficulty for LGBTQ elders that affects their health involves finances. A SAGE study reports that 42 percent of LGBTQ adults between the ages of 45 and 75 feel “very” or “extremely” concerned about their financial security in retirement, whereas only 25 percent of non-LGBTQ older adults gave those response levels (Espinoza 2014). Because job opportunities are often limited by discrimination, many LGBTQ older adults

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have jobs with lower wages and with no employer-sponsored comprehensive healthcare and pension benefits (Movement Advancement Project, Services and Advocacy for GLBT Elders, and Center for American Progress 2010). In addition, LGBTQ elders in relationships frequently do not receive many benefits common for heterosexual couples. For example, the death of a same-sex partner might leave the remaining partner without survivor benefits. If the two were not legally married, the survivor might not be entitled to Social Security benefits, widow/widower’s pension, or assets left by the deceased. Many of these factors—fewer financial resources, inadequate medical care, isolation, and fewer children to care for them—contribute to LGBTQ elders’ greater need for residential long-term care. However, many LGBTQ older adults, because of past experiences of discrimination, feel uneasy about moving into places such as assisted living facilities and nursing homes (Movement Advancement Project, Services and Advocacy for GLBT Elders, and Center for American Progress 2010). In granting marriage equality to same-sex couples, the Obergefell decision reduced disparities relating to marital benefits. Under the ruling, married same-sex couples have the same rights to Social Security benefits, survivor benefits, health benefits, and so on as any other married couple—potentially opening up benefits for same-sex couples (Fredriksen Goldsen et al. 2014). The Obergefell ruling thus may lessen the LGBTQ population’s financial need for residential long-term care.

D i s pa ri t i e s i n L o ng -T erm C are A mong O lder R acially E t h n ic a l ly D i v e r se A dults

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Racially and ethnically diverse adults who use long-term services are typically younger, with more physical impediments, and are more likely than white older adults to use nursing homes (Fabius et al. 2018; Rahman and Foster 2015). Additionally, long-term care has been one of the most racially segregated health sectors (Rahman and Foster 2015). Disparities in access and quality among long-term care services indicate that older nonwhite adults tend to receive care in poor-performing nursing homes in comparison with white older adults (Buchmueller et al. 2016; Mack et al. 2020). Compared with white nursing home residents, African-American nursing home residents receive a lower clinical quality of care (Grabowski and McGuire 2009), are less likely to receive a flu shot or other vaccinations (Cai et al. 2011; Luo et al. 2014), and have their pain inadequately treated (Hunnicutt et al. 2017). Historically, elders from racial and ethnic minority groups have often had caregivers available in their immediate families, and they relied less on residential and home and community-based long-term care services than white elders. However, as a result of the higher educational levels of successive immigrant generations and downturns in the world economy, family caregivers now balance caregiving time with work responsibilities. This trend signals two implications for the field:

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1. More frail diverse elders will seek long-term care in the future. (Recall from chapter 1 that frailty is a condition marked by a lack of resilience to physiological changes and an elevated risk of poor health outcomes.) 2. Long-term care organizations, administrators, caregivers, and other professionals need to provide culturally competent services (as will be discussed in the following section). Many Hispanic/Latino adults share the culture of familism, which identifies families as primary providers of social support and caregiving. Though familism generally encourages families to provide long-term care to older members, younger generations in the twenty-first century are seeking alternatives in increasing numbers, in large part because of difficulties of balancing multiple responsibilities (Angel and Berlinger 2018). Additionally, more older Latinas have physical disabilities, and that is increasing their demand for long-term care services. As a result of these developments, the number of Hispanic/Latino older adults seeking formal long-term care services is gradually increasing. Older LGBTQ adults have more chronic diseases and disability yet are hesitant to seek long-term care, as reported in one systematic review of the literature (Caceres et al. 2020). Older LGBTQ persons are likely to seek long-term care as long as the residential care settings provide care that affirms their LGBTQ clients. This includes long-term care providers who are culturally competent and facilities with a mission and values that reflect inclusive care and services (Putney et al. 2018).

D e l iv e r i n g C u lt u r al ly C o mpetent L ong -T erm C are Various aspects of the US health system influence these health disparities among diverse elder groups. They include the attitudes of healthcare providers, the way patients understand and seek healthcare, the way healthcare providers offer services, and the general organizational system (Byrd, Fletcher, and Menifield 2007). Cultural competence is a critical element in addressing these disparities, and it must be developed at both individual and organizational levels over an extended period of time. Cultural competence “a set of congruent behaviors, attitudes, and policies that come together in a system or agency or among professionals that enables effective interactions in a cross-cultural framework,” as defined by the Agency for Healthcare Research and Quality (AHRQ 2019). The focus of cultural competence is to develop familiarity with each person’s social identity along with one’s racial, ethnic, and cultural background and to understand how these elements affect the person’s attitudes about health and healthcare. With this knowledge, the provider can design and implement interventions that are sensitive to each individual’s beliefs, traditions, and practices. Cultural competence also extends to

cultural competence A set of congruent behaviors, attitudes, and policies that come together in a system or agency or among professionals that enables effective interactions in a crosscultural framework.

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considerations of language and communication. CMS, The Joint Commission, and other healthcare organizations have introduced guidelines for assessing long-term care facilities’ translation services for elders whose primary language is not English. A 2016 regulation under the Affordable Care Act (ACA) of 2010 required federally funded providers and organizations to provide “meaningful access” to language assistance (US Department of Health and Human Services, Office of Civil Rights 2021). However, a 2020 ruling loosened ACA regulation related to providing language provisions for those with limited English proficiency (CMS 2020). Additionally, providers and organizations are no longer required to provide video interpreting services. This ruling reduces “meaningful access” to language services for individuals with limited English proficiency as well as those with hearing loss and disability. In times of infectious outbreaks, such as the COVID-19 pandemic, vulnerable individuals, especially in nursing homes, may not access these language services, and that lack of communication in a way the resident can understand can lower the quality of needed care and lead to poor health outcomes (Green and Nze 2017). In a “melting pot” society, cultural competence requires the respectful treatment of individuals regardless of age, race/ethnicity, disability, gender, or sexual orientation. In December 2000, the Office of Minority Health within the US Department of Health and Human Services published a set of standards for culturally and linguistically appropriate services (CLAS). The aims of the CLAS standards were as follows (OMH 2001, 28): ◆◆ “They provide a common understanding and consistent definitions of culturally and linguistically appropriate services in health care.” ◆◆ “They offer a practical framework for the implementation of services and organizational structures that can help health care organizations and providers be responsive to the cultural and linguistic issues presented by diverse populations.” In 2013, the Office of Minority Health released enhanced National CLAS Standards, a set of 15 standards that incorporate broader definitions of culture and health. Shaped by public comments and discussion, the standards promote equity in health and healthcare through the provision of services that are respectful to the cultural health beliefs, practices, and needs of different groups of the population (OMH 2022). Healthcare leadership’s need for cultural competence training and the connection of cultural competence to quality outcomes have been emphasized in much healthcare management research (Curtis and Dreachslin 2008; Dreachslin and Hobby 2008). Because of the profound extent to which a person’s gender, race/ethnicity, sexual orientation, and cultural background can influence perceptions of health and quality of care, many medical schools and training programs have integrated cultural competence into their curricula (Chen 2009). Efforts to promote culturally competent care have addressed not only racial

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and ethnic minorities but also the LGBTQ population. The National Resource Center on LGBTQ Aging, the only federally funded resource center on behalf of LGBTQ older people, offers a range of training programs for staff members and volunteers emphasizing culturally competent care and service.

A Look Ahead As the world responds to the COVID-19 pandemic, it is becoming increasingly evident that older adults, especially elders of color and from other minority populations, are more vulnerable to the ravages of this serious viral infection. Because culture is a highly influential factor affecting an individual’s beliefs, behaviors, and health status, delivering long-term care that is culturally appropriate and competent is essential. As the size and diversity of the older adult population in the United States increases, the challenge for long-term care providers and administrators to ensure the provision and delivery of culturally competent care is critical. Those who can meet this challenge are poised to become the health leaders today and into the future. Trends in international migration indicate that the need for diversity and cultural competence training in long-term care is global in nature. Many European Union countries have faced economic and societal challenges related to the influx of immigrants from nonEuropean nations, and such problems will be exacerbated as the elders in these family units age in place. At the same time, emerging nations experiencing famine and political unrest will face shortages of caregivers for elders who remain in tribal villages and homelands. The development of global cultural competence standards to effectively address caregiver shortages and other problems will be an ongoing need. Issues related to many groups of elders have yet to be studied. As immigrants continue to move throughout the global economy, healthcare leaders need to assess the health needs of diverse elders and develop culturally competent approaches to help them successfully age in their communities.

For Discussion 1. Define the following social constructs related to diversity: race, ethnicity, gender, and sexual orientation. 2. Explain the demographic trends associated with the growing number of diverse elders. 3. Explain how elder women’s longevity relates to their long-term care needs. 4. Why do diverse elder women face more obstacles in aging than their white counterparts do? 5. Discuss health disparities among the older Hispanic/Latino population.

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6. Discuss health disparities among the older American Indian or Alaska Native (AI/AN) population. 7. Discuss health disparities among the older LGBTQ population. 8. Many groups of diverse elders have high incidences of chronic health conditions. Choose two groups of diverse elders and discuss how their illnesses affect their long-term care needs. 9. What obstacles do LGBTQ elders face in being accepted as residents in long-term care facilities? 10. How does language affect the ability to obtain services for the aging? 11. For what diverse elder groups are poverty and lack of access to healthcare services a major issue? 12. What role do culturally competent providers play in reducing health disparities among diverse elders? 13. Discuss long-term care preferences among diverse elders that are likely to affect residential or home and community-based long-term care services.

C a s e S t u d y : C u lt u r a l ly S e n s i t i v e P a l l i at i v e C a r e Palliative care takes a team-based approach to help people with serious illnesses manage their symptoms and pain. The focus of palliative care is on the quality of life of the patients and their care partners. The palliative care team consists of a range of professionals such as physicians, nurses, psychiatrists, counselors, and social workers. The coordination of palliative care is based on the assessment of physical, psychological, and spiritual needs of the person, and it can be provided at any point during the course of the illness (American Psychological Association 2019). Many older adults in need of long-term care have to stay in control of their symptoms and pain, and therefore they can greatly benefit from palliative care. The increased demand for long-term care, including palliative care, as the US population ages also creates a greater demand for culturally sensitive palliative care to meet the needs of the increasingly diverse older population. Palliative care is based on the person’s subjective assessment of pain and other quality-of-life issues that are shaped by one’s cultural beliefs and practices. For example, there is substantial cultural variation in how people express and communicate their pain with healthcare professionals. Some cultures tend to be very stoic with regard to pain and discourage people from admitting it to others. People with limited language proficiency may also experience difficulty in expressing their pain to healthcare providers who do not understand their language or culture (Givler et al. 2022). The palliative care program in Los Angeles, California, called Iyashi (the Japanese word meaning “to heal”), is an example of a culturally sensitive palliative care program—in

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this case, one specifically tailored for Japanese Americans and Japanese older adults (Keiro 2022). Iyashi provides a team-based outpatient program that includes a wide range of services such as 24/7 telephone support, pain and symptom management and consultation, emotional and spiritual support, and home safety evaluation. These services are available with Japanese language support as needed. The providers are also familiar with Japanese cultural values that often praise endurance through difficult times (gambaru) and accept the current situation as something beyond their control (shikata ga nai). Given that the older population is becoming increasingly diverse culturally, there is a great need for palliative care programs that are sensitive to older adults’ values and preferences so that their pain and symptoms are properly managed in the way that is most suitable to them.

Case Study Questions 1. What is palliative care, and how is it important for older adults with long-term care needs? 2. Why is it important to provide culturally sensitive palliative care? 3. What should be provided as culturally sensitive palliative care for older adults with chronic health problems?

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Iridescent Life Course of LGBTQ Adults Aged 80 Years and Older in the United States.” International Journal of Aging and Human Development 88 (4): 380–404. Fredriksen Goldsen, K. I., H.-J. Kim, C. Shiu, and A. Bryan. 2017. “Chronic Health Conditions and Key Health Indicators Among Lesbian, Gay, and Bisexual Older US Adults, 2013– 2014.” American Journal of Public Health 107 (8): 1332–38. Gates, G. J. 2011. “How Many People Are Lesbian, Gay, Bisexual, and Transgender?” Williams Institute. Published April. http://williamsinstitute.law.ucla.edu/wp-content/ uploads/Gates-How-Many-People-LGBT-Apr-2011.pdf. Gehlert, S., D. Sohmer, T. Sacks, C. Mininger, M. McClintock, and O. Olopade. 2008. “Targeting Health Disparities: A Model Linking Upstream Determinants to Downstream Interventions.” Health Affairs 27 (2): 339–49. Givler, A., H. Bhatt, and P. A. Maani-Fogelman. 2022. “The Importance Of Cultural Competence in Pain and Palliative Care.” National Library of Medicine. Updated May 8. www. ncbi.nlm.nih.gov/books/NBK493154/. Grabowski, D. C., and T. G. McGuire. 2009. “Black-White Disparities in Care in Nursing Homes.” Atlantic Economic Journal 37 (3): 299–314. Green, A., and C. Nze. 2017. “Language-Based Inequity in Health Care: Who Is the ‘Poor Historian’?” AMA Journal of Ethics 19 (3): 263–71. https://doi.org/10.1001/journalofethi cs.2017.19.3.medu1-1703. Hado, E., and B. Flinn. 2021. “LTSS Choices: Home and Community-Based Services for Older Adults.” AARP Public Policy Institute. Published November. https://doi.org/10.26419/ ppi.00153.001. Hunnicutt, J. N., C. M. Ulbricht, J. Tija, and K. L. Lapane. 2017. “Pain and Pharmacologic Pain Management in Long-Stay Nursing Home Residents.” Pain 158 (6): 1091–99. Initiative on Asian Americans and Pacific Islanders. 2016. “Critical Issues Facing Asian Americans and Pacific Islanders.” The White House. Accessed March 25. www.

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whitehouse.gov/administration/eop/aapi/data/critical-issues (content no longer available). Jones, J. 2022. “LGBT Identification in U.S. Ticks up to 7.1%.” Gallup. Published February 17. https://news.gallup.com/poll/389792/lgbt-identification-ticks-up.aspx. Jones, N., R. Marks, R. Ramirez, and M. Ríos-Vargas. 2021. “2020 Census Illuminates Racial and Ethnic Composition of the Country.” Published August 12. www.census.gov/library/ stories/2021/08/improved-race-ethnicity-measures-reveal-united-states-populationmuch-more-multiracial.html. Keiro. 2022. “Iyashi Care.” Accessed May 20. www.keiro.org/what-we-do/iyashi-care. Lambert, S. 2005. “Gay and Lesbian Families: What We Know and Where to Go from Here.” Family Journal 13 (1): 43–51. Lourde, K. 2009. “Facing Discrimination Issues.” Provider 35 (7): 20–32. Luo, H., X. Zhang, B. Cook, B. Wu, and M. R. Wilson. 2014. “Racial/Ethnic Disparities in Preventive Care Practice Among U.S. Nursing home Residents.” Journal of Aging and Health 26 (4): 519–39. Mack, R. S., B. M. Jesdale, C. M. Ulbricht, S. N. Forrester, P. S. Michener, and K. L. Laplane. 2020. “Racial Segregation Across U.S. Nursing Homes: A Systematic Review of Measures and Outcomes.” Gerontologist, 60 (3): e218–e231. https://doi.org/10.1093/geront/ gnz056. Mehrotra, C. M., and L. S. Wagner. 2008. Aging and Diversity: An Active Learning Experience, 2nd ed. London: Routledge. Morgan, R. E., C. Dragon, G. Daus, J. Holzberg, R. Kaplan, H. Menne, A. Symens Smith, and M. Spiegelman. 2020. Updates on Terminology of Sexual Orientation and Gender Identity Survey Measures. Report no. FCSM 20-03. Federal Committee on Statistical

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Smedley, B. D., A. Y. Stith, and J. R. Nelson. 2003. Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care. Washington, DC: National Academies Press. Stamm, B. J., J. F. Burke, C. C. Lin, R. J. Price, and L. E. Skolarus. 2019. “Disability in Community-Dwelling Older Adults: Exploring the Role of Stroke and Dementia.” Journal of Primary Care and Community Health 10: 1–11. Stierman, B., J. Afful, M. D. Carroll, T.-C. Chen, O. Davy, S. Fink, C. D. Fryar, Q. Gu, C. M. Hales, J. P. Hughes, Y. Ostchega, R. J. Storandt, and L. J. Akinbami. 2021. National Health and Nutrition Examination Survey 2017–March 2020: Prepandemic Data Files Development of Files and Prevalence Estimates for Selected Health Outcomes. National Health Statistics Reports, ser. NHSR, report no. 158. National Center for Health Statistics. Published June 14. https://stacks.cdc.gov/view/cdc/106273. US Census Bureau. 2018. Annual Estimates of the Resident Population by Sex, Age, Race, and Hispanic Origin for the United States and States: April 1, 2010 to July 1, 2017. Published June. Washington, DC: US Census Bureau. US Department of Health and Human Services, Office of Civil Rights. 2021. “HHS Continues to Improve Access for LEP Individuals.” Reviewed October 26. www.hhs.gov/civil-rights/ for-individuals/special-topics/limited-english-proficiency/hhs-continues-to-improveaccess-for-lep-individuals/index.html. US Department of Health and Human Services, Office of Minority Health (OMH). 2022. “Cultural and Linguistic Competency: National CLAS Standards.” Modified May 4. www. minorityhealth.hhs.gov/omh/browse.aspx?lvl=1&lvlid=6. ———. 2021. “Profile: Hispanic/Latino Americans.” Modified October 12. www.minorityhealth.hhs.gov/omh/browse.aspx?lvl=3&lvlid=64. ———. 2001. National Standards on Culturally and Linguistically Appropriate Services. Washington, DC: US Government Printing Office. World Health Organization (WHO). 2021. “Disability and Health.” Published November 24. www.who.int/news-room/fact-sheets/detail/disability-and-health.

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———. 2016. “What Do We Mean by ‘Sex’ and ‘Gender’?” Accessed March 25. http://apps. who.int/gender/whatisgender/en/ (content no longer available). Yoo, G. J., E. Musselman, Y. S. Lee, and D. Yee-Melichar. 2015. “Addressing Health Disparities Among Older Asian Americans: Data and Diversity.” Generations. Published February 26. www.asaging.org/blog/addressing-health-disparities-among-older-asian-americansdata-and-diversity (content no longer available).

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CHAPTER 9

INTERNATIONAL LONG-TERM CARE Emiko Takagi, PhD, and Carol Molinari, PhD

Learning Objectives After completing this chapter, you should be able to ➤➤ describe global trends in population aging; ➤➤ discuss global trends in older adults’ home and community-based services and institutional care services; ➤➤ describe how various countries address the long-term care needs of older adults; ➤➤ describe how governments in selected countries finance and provide a range of long-term care services; ➤➤ discuss how governments in selected countries offer support to informal caregivers; ➤➤ describe the impending global epidemic of dementia among the “oldest old” and its implications for home and community-based and institutional care service provision; and ➤➤ discuss global challenges of meeting long-term care needs for aging populations.

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Population aging—the demographic shift whereby older adults make up an increasing proportion of the total population—is a global trend. Population aging is primarily driven by decreases in fertility rates and increases in life expectancy. Countries of various economic and social standings are all expected to experience growth in their older populations and accompanying long-term care needs. Many developing countries, such as China, have been categorized as an aging society, indicating that they have a rapidly increasing older population that makes up more than 7 percent but not more than 14 percent of the population (Huang, Lin, and Lee 2019). A number of developed countries, including Sweden, Germany, Australia, and the United States, have already attained the designation of an aged society—meaning that greater than 14 percent but not more than 20 percent of the population is aged 65 or older (Huang, Lin, and Lee 2019). Some countries, such as Japan, are considered to have a hyperaged society, with greater than 20 percent of the population aged 65 or older (Coulmas 2007; Huang, Lin, and Lee 2019). Each country, depending on its degree of population aging, is in a particular stage of long-term care policy and service development. Most of the aged societies tend to have at least some long-term care policies and services already in place. However, the majority of aging societies are still at a very early stage of long-term care policy development. Long-term care consists of both medical and social services (e.g., personal care assistance with activities of daily living). The focus of this chapter is primarily policies and services related to the social or nonmedical component of long-term care. We begin by analyzing global trends in population aging and related policy implications. We then examine long-term care policies and services (e.g., home and community-based services [HCBS], institutional care, and support for family caregivers) of six countries—Sweden, Japan, Germany, Australia, the United States, and China—to highlight the similarities and differences. We conclude with a discussion of the global epidemic of dementia as it relates to future long-term care policies and services.

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population aging A demographic shift marked by the increasing size of the older population in proportion to the younger population.

aging society A society in which people aged 65 or older make up more than 7 percent but no more than 14 percent of the population.

aged society A society in which people aged 65 or older make up more than 14 percent but no more than 20 percent of the population.

hyperaged society A society in which people aged 65 or older make up more than 20 percent of the

G l o b a l T r e n ds

in

P o p u l at ion A gin g

population.

Population aging is a global phenomenon. The United Nations (2017) has reported that by 2030, the number of adults aged 60 or older in the world is expected to exceed the number of children aged nine or younger for the first time in history. Globally, the number of adults aged 65 or older has been predicted to double, from 703 million in 2019 to 1.5 billion in 2050 (United Nations 2019). Population aging continues to be the trend around the world. Whereas the majority of the world’s older adults have been concentrated in Europe, the recent growth of the proportion of older adults has been more dramatic in other parts of the world, especially in Asia and Latin America (He, Goodkind, and Kowal 2016). For example, aging of populations in Eastern and Southeast Asia has been projected to accelerate between 2019 and 2050: the share of adults aged 65 or older is expected to increase by the largest percentage in the

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Republic of Korea (South Korea)—23 percent—followed closely by Singapore at 20.9 percent (United Nations 2019). Although the percentage of older adults remains higher in the more developed nations of Europe and North America, the growth of older adults as a proportion of the population in these countries and continents is expected to be slower than in developing regions (United Nations 2017). Exhibit 9.1 shows that the regions with the highest percentages of older adults in two categories—aged 65 or older and aged 80 or older—are projected to continue to be concentrated in Eastern and Western Europe, with the lowest percentages in the sub-Saharan region of Africa. However, the high rates of growth among older adults in Latin America and Asia demonstrate that societies in these regions are rapidly becoming aged similar to aged societies in Europe, North America, and Oceania (the lands of the Pacific Ocean, including Australia, New Zealand, and 20 other islands).

EXHIBIT 9.1 Older Population Percentages by World Regions: 2019, 2030, and 2050

Percentage of Population Aged 65 or Older

Percentage of Population Aged 80 or Older

Sub-Saharan Africa 2019 2030 2050 Expected Increase from 2019 to 2050

3.2% 3.5% 5.7% 78%

0.4% 0.4% 1.0% 150%

Asia 2019 2030 2050 Expected Increase from 2019 to 2050

  9.2% 12.3% 19.4% 111%

1.7% 2.3% 5.5% 224%

Eastern Europe 2019 2030 2050 Expected Increase from 2019 to 2050

17.9% 22.2% 26.5% 48%

4.2% 5.9% 9.5% 126%

Western Europe 2019 2030 2050 Expected Increase from 2019 to 2050

20.2% 23.8% 27.6% 37%

  6.0%   7.2% 10.8% 80%

World Region

continued

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Percentage of Population Aged 65 or Older

Percentage of Population Aged 80 or Older

Latin America / Caribbean 2019 2030 2050 Expected Increase from 2019 to 2050

  8.4% 11.9% 18.7% 123%

  1.7%   2.5%   5.2% 206%

North America 2019 2030 2050 Expected Increase from 2019 to 2050

16.7% 20.8% 22.5% 35%

  4.0%   5.5%   8.4% 110%

Oceania 2019 2030 2050 Expected Increase from 2019 to 2050

13.5% 16.2% 19.6% 45%

  3.3%   4.5%   6.7% 103%

World Region

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EXHIBIT 9.1 Older Population Percentages by World Regions: 2019, 2030, and 2050 (continued)

Note: Data for Asia do not include the countries of the Middle East. The region designated as Oceania includes Australia, New Zealand, and 20 other island nations in the Pacific Ocean. Source: Data from US Census Bureau (2018).

Based on these regional projections from 2019 to 2050 (US Census Bureau 2018), North America and Western Europe are expected to have the lowest growth in their proportional populations of adults aged 65 or older (35 percent for North America, 37 percent for Western Europe) in comparison with other less developed regions such as Latin America (123 percent) and Asia (111 percent). The fastest-growing age group within the older population is the group referred to as the “oldest old.” Globally, the number of these adults aged 80 or older has been projected to increase from 137 million in 2017 to 425 million in 2050 (United Nations 2017). As shown in exhibit 9.1, the percentage of populations aged 80 or older is growing at an explosive rate across all regions, with Asia and Latin America having the highest projected rates of growth—224 percent for Asia and 206 percent for Latin America (US Census Bureau 2018). Globally, as more older adults live very long lives extending into their 80s, 90s, and beyond, demand for long-term care services will grow significantly (United Nations 2016). As life spans increase, so does the prevalence of age-related chronic health conditions

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that likely require long-term care services (US Census Bureau 2009). In most developed countries, individuals aged 80 or older use approximately half of all long-term care services (Colombo et al. 2011). In less developed regions, there are fewer reliable data regarding use of long-term care because public health insurance, a common source of such data, is rarely available (United Nations 2016). Nonetheless, the dramatic growth of older populations in both more and less developed regions creates an imminent need to establish long-term care policies and services.

P u b l ic L o ng -T e r m C are P olicies A round

th e

W orld

In the discussion of public long-term care policies around the world that follows, we first examine global trends in long-term care policy and service development and then turn to a comparison of those policies and services for six selected countries—Sweden, Japan, Germany, Australia, the United States, and China. Global Trends

in

L o n g -T e r m C a r e P o l i c y

and

Service Development

Since the beginning of the twentieth century, changes in family structure have contributed to challenges in caring for frail older family members. (Recall from chapter 7 that frailty is a condition marked by a lack of resilience to physiological changes and an elevated risk of poor health outcomes; frailty may be related to multiple physiological conditions). Globally, fertility rates are falling, resulting in fewer children and grandchildren available to care for older family members. Rising divorce rates, single-parent households, and increasing numbers of couples without children also mean that the typical family caregivers of spouses and adult children may no longer be readily available. Furthermore, increasing job mobility often requires children to move farther away from their parents’ residence, which reduces their availability as caregivers for aging family members. These changes, in countries worldwide, have placed pressure on governments to develop public policies that can provide affordable and comprehensive long-term care services. Such services involve a range of options, including care and services offered at older adults’ homes, services offered in older adults’ communities, and institutional care offered in such places as nursing homes and assisted living facilities. Some long-term care services also support family caregivers. A global initiative led by the World Health Organization (WHO) encourages governments to take leadership roles in coordinating HCBS (KPMG International 2013). Such services incorporate medical and nonmedical care for older adults living in their own homes, and they may include home health nurse visits, care management, and adult day care. Between 2009 and 2019, the percentage of long-term care users receiving care at home had risen to about 68 percent on average for 20 member countries of the Organisation for Economic Co-operation and Development (OECD 2021). The numbers, shown in exhibit 9.2, varied widely from one country to another, ranging from 93 percent in Israel to only 35 percent in Portugal. Copying and distribution of this PDF is prohibited without written permission. For permission, please contact Copyright Clearance Center at www.copyright.com.

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% of total LTC recipients aged 65 years and over 2009

2019

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EXHIBIT 9.2 Share of Long-Term Care Recipients Receiving Care at Home, 2009 and 2019

Cz

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Sl

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lia

an

Fr

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ga

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93 100 90 83 82 90 81 79 79 76 78 77 76 75 75 74 68 73 72 6973 80 70 68 67 68 67 66 66 6665 66 65 70 61 60 5958 59 5860 58 52 60 50 50 35 40 30 20 15 10 0

249

Source: Reprinted by permission from OECD (2021).

The growing emphasis on community-based services is partly a result of older adults’ strong preference for aging in place—that is, their preference for remaining in their own homes or in noninstitutional residential settings even after they have developed chronic health conditions, illness, or disability. Evidence of this preference has been found across a number of countries (United Nations Population Fund and HelpAge International 2012). In addition, some studies have suggested that HCBS are more cost-effective than institutional care (Fox-Grage 2013). Although the validity of this claim has yet to be proved definitively, the potential cost savings have attracted many policymakers to the home and community-based model of long-term care delivery. Examples

of

L o n g -T e r m C a r e P o l i c i e s

and

Services Around

th e

aging in place The practice, preferred by many older adults, of staying in their own homes and communities as they grow older.

World

Exhibit 9.3 presents a comparison of long-term care policies and systems for six countries: Sweden, Japan, Germany, Australia, the United States, and China. These countries were selected to show a global range in regard to the availability of publicly funded national long-term care systems that include HCBS, as well as informal caregivers. Sweden, Japan, and Germany provide national public long-term care insurance programs that are universally available to their citizens regardless of their income levels. These public long-term care programs provide coverage for a wide range of services including both residential care and home care services. Australia represents another type of long-term care system, where there is a national long-term care insurance program for both residential care and home care, but its coverage is determined by the beneficiaries’ financial levels and physical conditions. All four of these countries generally provide publicly

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Widely available

Each municipality offers its own financial payment program, respite care, consultation, and training programs Improvement of medical care and social service agencies; reduction of discrepancies in service quality and availability

Public home and communitybased services

Support for informal caregivers

Trend and future direction

Emphasis on prevention to control cost of services; revision of eligibility

Local cities and nonprofit organizations offer support group, consulting, and respite care services

Widely available

Universally available

Japan

Reduction of institutional care and enrichment of community-based services; address issues of staff shortage, care manager appointment, and quality assurance

Cash payment through national long-term care policy

Widely available

Universally available

Germany

Reform package in 2012 enriching communitybased services; improving coordination of the healthcare and social care services

Cash payment to caregivers through national Carer Payment and Carer Allowance programs

Widely available

Mixture of universal program and meanstested program

Australia

Sources: Data from Applebaum, Hautz, and Bardo (2019); KPMG International (2013); US Census Bureau (2018).

Universally available

Public longterm care insurance

Sweden

EXHIBIT 9.3 Examples of Long-Term Care Policies and Services

Growing emphasis on communitybased services through innovative programs such as Program of All-Inclusive Care for the Elderly (PACE)

Financial payment is limitedly available in some states; local offices offer support group, consulting, training, and respite care service

Available primarily for low-income individuals

Available only for low-income seniors through means testing

USA

Rapid development of private long-term care services; expansion of service network to support communitybased care

Rarely available

Available but very limited

Very limited in availability

China

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funded HCBS that are widely available to older adults and their families living in communities. On the other hand, in the United States, the availability of both the public long-term care insurance program and home and community-based programs are strictly limited to low-income older individuals. China represents a nation where there is no comprehensive public long-term care system established. The absence of a public long-term care system in China is promoting rapid development of private long-term care services (see the related “Did You Know?” sidebar “Exporting Long-Term Care Services: Development of Skilled Nursing Homes and Senior Living Facilities in China”).

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DID YOU KNOW? Exporting Long-Term Care Services: Development of Skilled Nursing Homes and Senior Living Facilities in China

The continuously growing number of adults aged 60 or older in China reached 247 million in 2017 and has been projected to reach 487 million by 2050 (Flynn 2019). The American company Genesis HealthCare saw this growing segment of the population as a promising opportunity to introduce its rehabilitation services to China, where the healthcare system is primarily focused on acute care services (Flynn 2019). In November 2014, Genesis opened its first rehabilitation facility, called Vitality Center, in Zengcheng, after nine months of negotiations and

Sweden: Universal Long-Term Care Coverage

administrative processes. The CEO of Genesis, George Hager, noted that the breakthrough in the negotiations came with the sale of 51 percent of its Chinese subsidiary, GRS-HS, to Riswein

Sweden is one of the developed countries in northHealth Industry Investment. The partnership established with ern Europe that provides universal long-term care this sale gave Genesis the funds it needed to expand its rehabilcoverage for its citizens. As a part of its overall itation service business, which by 2019 included rehabilitation welfare program, Sweden provides a wide range of service facilities at 12 locations in China (Flynn 2019). long-term care services, including both institutional In addition to forging a business partnership in the country, care and HCBS. The long-term care services are the export of long-term care services requires careful marketing administered by regional governments and funded strategies that would make the long-term care services socially by general revenues primarily collected by local and culturally acceptable. In the case of Genesis HealthCare, municipal governments (Meagher and Szebehely the company purposefully chose the hospital model to deliver 2013). All Swedish citizens are eligible for long-term rehabilitation services, which Genesis believed would be better care services as long as their care assessment presrecognized by average Chinese citizens than other care delivery ents the need for such services. But because more models (Spanko 2018). Another US-based company, Columbia than 85 percent of the services are funded by local Pacific, that operates three senior living facilities in China, taimunicipal taxes, both the care assessment criteria lored its marketing message to emphasize the value of paying and the range of services offered to beneficiaries for services in senior living facilities, which was a very new convary across municipalities (Meagher and Szebehely cept of care to many people in China (Spanko 2018). Columbia 2013). Though some minimum requirements of Pacific has opened one additional facility and is developing two coverage are defined by the national welfare policy, more in China (Columbia Pacific Communities 2022). much of the financial and program management of long-term care services is handled by local municipal offices (Meagher and Szebehely 2013). This arrangement sometimes creates regional discrepancies in service coverage and inefficient flow of resources between the national healthcare system and municipal-level long-term care services. Copying and distribution of this PDF is prohibited without written permission. For permission, please contact Copyright Clearance Center at www.copyright.com.

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universal long-term care coverage Coverage of all citizens by public long-term

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In Sweden, relief support for caregivers is provided by home care service agencies or voluntary organizations free of charge or with minimal fees, depending on the municipality. In some municipalities, services for caregivers include spa treatments, massage services, and health consultations (Fukushima, Adami, and Palme 2010).

care programs administered by national and local

Japan and Germany: Mandatory Long-Term Care Insurance

governments.

Japan and Germany have long-term care policies that are administered separately from their national health insurance policies. The policies are structured as mandatory long-term care insurance programs toward which all citizens older than a certain age are required to contribute. In Japan, contribution to the national long-term care insurance program is mandated for citizens aged 40 or older (although the contributions are smaller for those aged 65 or older); the insurance covers long-term care services for people aged 65 or older (Tikkanen et al. 2020). In Germany, the long-term care insurance policy mandates payroll tax contributions from both employees and employers, or the purchase of private longterm care insurance if the person opts out of the public long-term care program (Nadash, Doty, and von Schwanenflügel 2018). Unlike the Japanese policy, the German long-term care insurance policy covers people in need of service regardless of their age, although more than 80 percent of its beneficiaries are aged 65 or older (Nadash, Doty, and von Schwanenflügel 2018). Beneficiaries of the German long-term care insurance program must show a certain level of long-term care need; the care level is determined based on the person’s status related to mobility, cognitive ability and communication, behavioral and psychological problems, self-care, treatment management, and social environment (Nadash, Doty, and von Schwanenflügel 2018). The level of beneficiaries’ dependency is assessed across five categories, and it is determined by the professionals on the program’s peer review boards. Beneficiaries are then qualified for a range of services (e.g., respite care, home modifications, pension contributions, home care, day and night care, nursing home care) in accordance with their dependency level (Nadash, Doty, and von Schwanenflügel 2018). The funding of Japanese long-term care policies—known as Kaigo Hoken—comes from general tax revenues at national, prefectural, and municipal levels, as well as from insurance premiums that are mandated for people aged 40 or older (National Institute of Population and Social Security Research 2019). Eligibility for long-term care services is determined by a standardized care needs assessment questionnaire. Depending on the level of eligibility, individuals may be entitled to receive such benefits as home care services, house cleaning, meal delivery, day care, and institutional care services. Japanese long-term care insurance does not directly pay family caregivers. In Germany, however, national long-term care insurance provides credits to the public pension accounts of eligible family caregivers who left work to give care. The credits are intended to compensate for caregiving-related financial losses in retirement savings (Nadash, Doty, and

mandatory long-term care insurance Insurance programs for long-term care toward which people in certain age groups or employment statuses are required to contribute.

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von Schwanenflügel 2018). The German program also provides eligible family caregivers with four weeks of vacation time, during which the insurance covers expenses related to respite care, as well as free caregiving training (Applebaum, Hautz, and Bardo 2019). Australia: Combination of National Insurance and Means-Tested Programs

Australia incorporates national long-term care and means testing to provide long-term care services to its citizens. Through a national long-term care program called Aged Care, more than 1.3 million people received long-term care services during 2017–2018, and the majority of these recipients used home-based care and support (Royal Commission into Aged Care Quality and Safety 2019). In Australia, the extent of long-term care coverage by the governmental subsidy is determined by means testing based on the beneficiary’s level of dependency and income. Much of the public effort in Australia aims to strengthen support for informal caregivers and to enrich home and community-based programs for frail older adults. The Australian government provides payment to family caregivers in a variety of forms. For instance, the Carer Payment program offers financial support to family members who are not able to work full-time because of caregiving responsibilities (Mossialos et al. 2015). In 2015, the country started a program called the Commonwealth Home Support Programme (CHSP), which aimed to consolidate four existing programs to promote better service delivery and enhance the support for older adults with disabilities who were living in their own homes (Australian Government Department of Health 2022). Under the CHSP, the previously separated programs of home and community care, respite services for caregivers, therapy programs, and housing assistance have been integrated through the sharing of a central client record program, a standardized assessment, and improved access to information for older clients, their families, and providers (Royal Commission into Aged Care Quality and Safety 2019).

means testing Determining whether an individual meets a program’s eligibility criteria, which generally are based on income level.

The United States: Means-Tested Programs for Low-Income Older Adults

In the United States, public long-term care programs are only available to people who have been determined through means testing to be unable to purchase privately offered services. Although Medicare provides almost universal medical insurance for people aged 65 or older, nonmedical long-term care service (e.g., personal assistance) may or may not be covered by individual state programs. The only US public policy that offers coverage of nonmedical long-term care service is Medicaid, which is limited to low-income individuals. Eligibility for Medicaid long-term care benefits is determined through strict means testing with a set of guidelines concerning income level, household and family structure, and the amount of personal assets. Medicaid is jointly funded by the general tax revenues of the federal and the state governments, and it generally covers long-term care services

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in nursing homes and also at home on a limited basis. People who are above the income eligibility line must pay for their long-term care expenses either out of pocket or through private long-term care insurance if they have it. A growing number of initiatives in the United States seek to fund more Medicaid HCBS waivers for low-income older adults requiring nursing home level care. The Program of All-Inclusive Care for the Elderly (PACE) similarly allows frail, low-income older adults to receive care in their own homes and communities (National PACE Association 2022). PACE was covered in greater detail in chapter 5. In the United States, the Family Medical Leave Act requires employers with 50 or more employees to allow up to 12 weeks of unpaid family leave for employees needing to serve as caregivers (US Department of Labor 2016). Although this benefit still leaves caregivers with financial losses, it at least allows them to keep their employment while attending to their family member’s needs. Federal funding through the Older Americans Act also supports the National Family Caregiver Support Program, which provides eligible informal caregivers with information about services and programs such as caregiver support groups, training, and respite care (Administration for Community Living 2021). Consumer-directed home care programs (discussed in chapter 5), another type of support for family caregivers, allow older adults in some states to employ their family members as paid caregivers (Ruggiano 2012; Sollito 2022). China: An Emerging Formal Long-Term Care System

filial piety A cultural norm rooted in the Confucian philosophy that defines a virtue to respect older family members and ancestors. In modern Asian countries such as China, South Korea, and Japan, filial piety supports a cultural assumption that the oldest son and his family have the primary responsibility to care for aging parents.

The percentage of China’s population consisting of older adults is expected to rapidly grow in the coming years, partly as a result of the one-child policy that was in place between 1979 and 2015. The older population was projected to be more than double its ­percentage in 2018 (17.8 percent) to reach 35.3 percent by 2050 (US Census Bureau 2018). A cultural norm in China called filial piety delegates caregiving responsibilities for aging adults to the adults’ sons and their families (Hooyman, Kamamoto, and Kiyak 2017; Xu and Chow 2011). As a result, usage of long-term care services from formal providers is considered a last resort for many families. However, the substantial increase in the size of the older population, along with rapidly changing family structures, has heightened the need for public long-term care services. Currently, the programs in China offer services mostly to people with limited incomes and assets. Availability of these means-tested welfare services is sporadic, and many rural parts of the country rely exclusively on informal caregivers. Foreseeing a growing demand for long-term care services, the Chinese government is working to develop more comprehensive social care services. Home and community-based services in China are being developed in conjunction with new institutional care services. The Chinese government frequently refers to a “90/7/3”

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informal plan—an aspiration that 90 percent of older adults will receive care through home health care, 7 percent will receive care through community care centers, and 3 percent will receive care through some type of subsidized housing, which may include nursing home services (Chen and Han 2016). Institutional care (e.g., nursing home services) in China still has limited availability, with approximately 25 long-term care beds per 1,000 adults aged 60 or older in 2014 (Lu, Liu, and Yang 2017). But since the introduction of institutional care in the 1990s, the country has established 37,000 long-term care institutional care facilities, accommodating 5 million beds (Lu, Liu, and Yang 2017). At the same time, the Chinese government has also started to invest in communitybased in-home care programs for older adults. In 2001, the Ministry of Civil Affairs implemented the Star Light project, which offered the funding equivalent of $1.9 billion (US) to build 32,000 Starlight Centers for older adults. The centers provide a range of community-based service programs such as home visits, day care, and healthcare clinics. The services are run by local agencies and municipal governments and are accessible to older adults who can afford to pay associated fees; most of the government-funded HCBS in China are limited to low-income, frail elderly people (Pan 2019; Xu and Chow 2011). Public support for informal caregivers in China is still scarce. The majority of older adults with disabilities are taken care of either by family caregivers or by live-in maids with little or no public support (Applebaum, Hautz, and Bardo 2019). In 2013, recognition of the need for caregivers led to the amendment of China’s Law of Protection of Rights and Interests of Elderly People, requiring family members to keep in touch with their older parents and provide them with emotional support (Wong 2013). The development of community-based programs for frail older adults aims to ease family caregivers’ burdens by providing such services as personal care assistance, recreational activities, and health clinics.

The examples from Sweden, Japan, Germany, Australia, the United States, and China show six countries at various stages in the development of long-term care systems and services. The countries have varying degrees of population aging, yet all are in need of sound long-term care systems for the growing numbers of older adults. Cross-national variations are partially derived from cultural differences about the caregiving responsibilities assumed for informal (e.g., family) and formal (e.g., national and local government) caregivers. In countries where the government is expected to take the primary role in providing welfare for its citizens, such as Sweden, long-term care services are integrated as a part of a national welfare program. On the other hand, countries such as China expect families to take the main responsibility for meeting older members’ long-term care needs. Other countries—such as Japan, Germany, Australia, and the United States—fall in the

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middle, with the government and informal caregivers sharing tasks to address older adults’ long-term care needs.

A G l o b a l E p i d em ic

of

D emen tia

EXHIBIT 9.4 Estimated Numbers of People with Dementia: 2015, 2030, and 2050

Millions

When considering global aging and long-term care needs, dementia—one of the most common chronic health problems of older adults with personal care needs—merits special attention. Globally, about half of older adults in need of personal care suffer from dementia, and 80 percent of those who reside in nursing homes have dementia, according to Alzheimer’s Disease International (ADI 2013). Because many types of dementia (including, notably, Alzheimer’s disease) are more common among older adults, the overall increase in the numbers of older people around the world will likely create something of a global epidemic. As exhibit 9.4 shows, all regions of the world have been projected to see the numbers of people with dementia significantly increase, with substantial growth likely to occur in many middle- and low-income countries; the numbers of people with dementia are expected to more than triple in Asia, Central and South America, and sub-Saharan Africa between 2015 and 2050 (ADI 2015). At this point, no treatment can definitively cure dementia. As a result, global initiatives are focused mainly on prevention and early intervention. The key issues and challenges related to dementia care differ depending on the country. Most developing countries have a lack of public awareness and understanding of dementia; people with dementia in these countries receive care mostly from informal caregivers (e.g., family members). On the other hand, most developed countries have at least some level of public understanding of dementia as a significant health problem. Subsequently, many of these countries have

80 70 60 50 40 30 20 10 0

71.84

39.79 20.75 21.87

14.8 10.93

11.74 4.58 7.28 2.09

Asia/Pacific

Europe

North America 2013

2030

2.34 5.05

4.12 9.2

Central and South America

1.31

Sub-Saharan Africa

2050

Source: Data from Alzheimer’s Disease International (2015).

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healthcare and social service programs to treat people with the condition (see the accompanying Critical Concept sidebar about Dementia Villages in the Netherlands). However, the costs of such services and programs tend to be very high. ADI (2015) estimated the total worldwide costs of dementia care at $818 billion (in US dollars) in 2015; this total exceeded the annual revenues of both Apple ($742 billion) and Google ($368 billion). The expected global epidemic of dementia is pressuring many governments to establish more cost-efficient long-term care programs for people with the condition (ADI 2019).

CRITICAL CONCEPT New Approaches to Residential Care: The Dementia Village

Currently, residential care for people with dementia is provided mostly within buildings or sections of buildings that have been designed for their special needs—for instance, a dementia care wing in a nursing home or a specialized assisted living residence. Despite efforts to minimize the feel of institutionalization and lack of autonomy, these approaches inevitably restrict residents’ abilities to lead their own lifestyles. In many nursing homes, residents with dementia are required to live within limited physical space. Many are assigned to a room where they are by themselves or share a room with other residents with the same condition, and they have limited outside space for walking around. Many room assignments are based on a nursing home’s capacity and logistics, not on residents’ personal preferences. Most of the time, rooms in a home share identical structures, though residents may be allowed to add personal touches to their given space. Despite the introduction of person-centered care in nursing homes, many organizations have yet to adopt this approach for provision of dementia care. Initiated in the Netherlands in 2009, the concept of the Dementia Village offers a vision for a community where residents with dementia have a choice in housing units that are appropriate to their lifestyles. Residences in the Dementia Village are situated around a courtyard that is separated from the rest of the society. Within the village, residents and their caregivers are able to freely walk around a park, gardens, and stores built for the community. The world’s first Dementia Village, called De Hogeweyk (Dementia Village), was established in Weesp, the Netherlands, in 2009. It hosts about 150 residents and offers a choice of lifestyle themes: Goois (upper class), homey, Christian, artisan, Indonesian, and cultural. Dementia Village has been introduced to other locations outside the Netherlands, including Italy, Germany, Denmark, and the United States (Dementia Village Associates 2022).

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A Look Ahead The global phenomenon of population aging will have significant influences on the volume and the nature of long-term care service demands. Aging nations at various stages of policy and program development will all experience continuous growth in their older population, and they will need to deal with a number of challenges to serve older adults’ long-term care needs. Such challenges include achieving financial sustainability of long-term care programs, enhancing the coordination of long-term care services, and strengthening public support for family caregivers. Aging countries around the world will face significant financial challenges in developing, managing, and sustaining long-term care programs for growing numbers of older adults. For countries with relatively well-established long-term care policies and services, the challenge lies in sustaining those programs. For example, Sweden had to address growing gaps in funding by restricting service eligibilities and introducing privatization of some provisions of its programs (Meagher and Szebehely 2013). Similarly, Japan has explored the raising of copayments from higher-income individuals, the transfer of management responsibilities of some personal care assistance programs to local governments, and a tightening of admission criteria for public nursing homes. At the same time, countries that are still in the early stages of long-term care policy development will encounter substantial financial challenges in establishing new services. For instance, the launch of South Korea’s national long-term care program caused the country to have, by far, one of the highest annual growth rates in public expenditures on long-term care, from 0.1 percent of gross domestic product (GDP) in 2005 to 1.0 percent of GDP in 2018 (OECD 2020). For many developing countries with limited resources to spare, funding a new array of long-term care programs will be exceedingly difficult. Because long-term care programs include a wide range of medical and nonmedical services, streamlining those services for older adults with multiple chronic health problems poses a variety of challenges. Long-term care often lacks efficient coordination, and inefficient delivery of services causes unnecessary financial costs and poor health and social outcomes for service recipients. In anticipation of significant growth in long-term care service demands, countries throughout the world must enhance the coordination of services that have traditionally been fragmented. In the United States, the PACE model has proved to be an efficient and cost-effective way of delivering longterm care services to frail older adults who would otherwise need nursing home care (National PACE Association 2022). Additionally, safety monitoring and telehealth services in community-based settings have been shown in a number of countries to improve care transitions and the quality of long-term care for older adults (International Federation on Ageing 2012).

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Throughout the world, family caregivers have been an indispensable source of long-term care for older adults, and strengthening public support for these caregivers is critical. KPMG International (2013) proposes seven approaches to support caregivers: (1) education and training, (2) better usage of technology for care coordination, (3) familyinclusive care management, (4) recognition of their skills and knowledge, (5) improved responsiveness to requests of family caregivers in crisis, (6) enrichment of personal support, and (7) improvement of benefits for family caregivers who have jobs. All aging countries will need to find their own ways to support family caregivers in conjunction with public long-term care programs.

For Discussion 1. Describe the concept of population aging. 2. Define aging society, aged society, and hyperaged society. What countries would be examples of each type? 3. Explain how global aging might influence the demands of long-term care services for older adults around the world. 4. Describe existing public long-term care systems in two of the six countries discussed in this chapter. Explain the countries’ similarities and differences. 5. Globally, many countries are investing heavily in home and community-based services programs. Discuss the benefits of HCBS programs for growing numbers of older adults with long-term care needs. Discuss the challenges of developing HCBS programs. 6. What is filial piety, and how does it affect the provision of long-term care services? As the composition of the family household changes, how will this cultural norm affect family caregivers? 7. Choose two countries, and discuss how they are providing public support for family caregivers. 8. The number of people with dementia is expected to grow rapidly throughout the world. Which of the countries discussed in this chapter seem to be best prepared to meet the long-term care needs of people with dementia? Why? 9. The long-term care needs of people with dementia include a wide range of medical and nonmedical services. Discuss how these services should be organized and provided to older adults who need long-term care. 10. Discuss future challenges that aging nations will likely face in meeting the longterm care demands of aging populations.

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C a s e S t u d y : S h o r ta g e old-age dependency ratio The ratio of the population aged 65 or older to the workingage population of individuals aged 15–64.

of

L o n g -T e r m C a r e W o r k e r s

Aging nations have experienced a significant shift in the old-age dependency ratio—that is, the number of adults aged 65 or older in relation to the number of working-age individuals (those aged 15–64). Globally, in 2019, there were 16 adults aged 65 or older per 100 working-age individuals; that figure is expected to increase to 28 older adults for every 100 working-age individuals in 2050 (United Nations 2019). As a result of this trend, countries with aging populations have begun to face serious shortages of long-term care workers. Because of the declining availability of long-term care workers born in the country, nations such as the United Kingdom, Germany, Canada, and the United States are increasingly relying on migrant workers for long-term care (Stone 2016). Typically, migrant long-term care workers are concentrated in low-paying jobs with temporary visa statuses. In the United States, the majority of the migrant long-term care workers enter the country through immigration programs such as family reunification, but about 20 percent of them do not have proper work authorizations (Stone 2016). Some countries that have traditionally been reluctant to allow less-skilled migrant workers have adopted immigration policies that now invite them. For instance, Japan, with its exceptionally rapid rate of population aging, has had an urgent need for workers in its long-term care facilities. In 2008, the country enacted a new immigration policy, called the Economic Partnership Agreement, that allowed workers from other countries into the long-term care industry for the first time in the nation’s history (Tsukada 2013). The agreement was made first with Indonesia and then with the Philippines. The migrant workers take mostly low-paying jobs in Japan and encounter language and cultural barriers; however, older adults have expressed appreciation for the generally high quality of care they have provided (Tsukada 2013). Despite the further shortages of long-term care workers anticipated in the years to come, the reform of immigration policy in Japan has been significantly slow because of the ambivalent public sentiment prevalent in Japanese society (Peng 2016). Governments must carefully reexamine issues of both domestic healthcare policy and immigration policy.

Case Study Questions 1. What is the old-age dependency ratio, and how does it affect the need for long-term care workers? 2. What solutions might be introduced to alleviate the shortage of long-term care workers? 3. What training and educational programs should be provided especially to migrant workers in long-term care facilities?

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Peng, Ito. 2016. “Testing the Limits of Welfare State Change: The Slow-Moving Immigration Policy Reform in Japan.” Social Policy & Administration 50 (2): 278–95. Royal Commission into Aged Care Quality and Safety. 2019. “Navigating the Maze: An Overview of Australia’s Current Aged Care System.” Published February 25. https:// agedcare.royalcommission.gov.au/news-and-media/navigating-maze-overview-➤ australias-current-aged-care-system. Ruggiano, N. 2012. “Consumer Direction in Long-Term Care Policy: Overcoming Barriers to Promoting Older Adults’ Opportunity for Self-Direction.” Journal of Gerontological Social Work 55 (2): 146–59. Sollito, M. 2022. “Medicaid’s ‘Cash and Counseling’ Allows Pay for Family Caregivers.” AgingCare. Accessed May 18. www.agingcare.com/articles/medicaid-cash-and-counseling-allows-pay-for-family-caregivers-133268.htm. Spanko, A. 2018. “Chine Beckons to US Skilled Nursing, Long-Term Care Operators.” Skilled Nursing News. Published August 19. https://skillednursingnews.com/2018/08/ china-beckons-u-s-skilled-nursing-long-term-care-operators/ Stone, R. L. 2016. “The Migrant Direct Care Workforce: An International Perspective.” Generations 40 (1): 99–105. Tikkanen, R., R. Osborn, E. Mossialos, A. Djordjevic, and G. Wharton. 2020. “International Health Care System Profiles: Japan.” Commonwealth Fund. Published June 5. www.commonwealthfund.org/international-health-policy-center/countries/japan. Tsukada, N. 2013. “The Foreign Long-Term Worker Challenge in Japan.” Generations 37 (1): 66–69. United Nations. 2019. World Population Ageing 2019. Report no. ST/ESA/SER.A/430. New York: United Nations. www.un.org/en/development/desa/population/publications/pdf/ ageing/WorldPopulationAgeing2019-Highlights.pdf.

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———. 2017. World Population Ageing 2017. Report no. ST/ESA/SER.A/408. New York: United Nations. www.un.org/en/development/desa/population/publications/pdf/ageing/WPA2017_Report.pdf. ———. 2016. 60+ Counts: The Growing Need for Long-Term Care; Assumptions and Realities. Published September. www.un.org/esa/socdev/ageing/documents/un-ageing_ briefing-paper_Long-term-care.pdf. United Nations Population Fund (UNFPA) and HelpAge International. 2012. Ageing in the Twenty-First Century: A Celebration and a Challenge. New York: UNFPA; London: HelpAge International. www.unfpa.org/sites/default/files/pub-pdf/Ageing%20report.pdf. US Census Bureau. 2018. “International Data Base.” Updated September. www.census. gov/population/international/data/dib/informationGateway.php (content no longer available). ———. 2009. An Aging World: 2008. International Population Reports. Published June. www.census.gov/prod/2009pubs/p95-09-1.pdf (content no longer available). US Department of Labor. 2016. “Employee Rights and Responsibilities Under the Family and Medical Leave Act.” Report no. WH1420. Updated April. www.dol.gov/whd/regs/compliance/posters/fmlaen.pdf. Wong, E. 2013. “A Chinese Virtue Is Now the Law.” New York Times. Published July 2. www. nytimes.com/2013/07/03/world/asia/filial-piety-once-a-virtue-in-china-is-now-the-law. html. Xu, Q., and J. C. Chow. 2011. “Exploring the Community-Based Service Delivery Model: Elderly Care in China.” International Social Work 54 (3): 374–87.

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PA R T I I I

MANAGEMENT ISSUES

P

art III comprises chapters 10 through 16 and focuses on the management of long-term services and supports, an essential aspect of effective long-term care service delivery. Long-term care professionals are challenged to manage services and staff while leading organizations through evolving crises such as the COVID-19 pandemic, as discussed in chapter 10. How we provide care for the long-term care consumer has numerous, interconnected components. These components include delivery of day-to-day operations (covered in chapter 11), the process of hiring and retaining the long-term care workforce (chapter 12), preservation of person-centered care in an evolving legal and regulatory environment (chapters 13 and 14), financing of long-term-care services (chapter 15), and the use of risk management to ensure quality and safety for long-term care consumers (chapter 16). While the essential toolkit for long-term care leaders is contained in many of these components, their application will continue to evolve as we reimagine long-term care delivery to meet changing consumer tastes and preferences while striving to create an environment that integrates clinical excellence, compassionate care, and effective use of available resources.

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CHAPTER 10

LEADERSHIP AND MANAGEMENT IN LONG-TERM CARE Sandi Lane, PhD, LNHA, FACHE, and Jennifer Johs-Artisensi, PhD

Learning Objectives After reading this chapter, you should be able to ➤➤ explain the key functions of long-term care managers; ➤➤ discuss the interrelatedness of leadership and management in long-term care organizations; ➤➤ describe a long-term care leader’s responsibility in influencing stakeholders; ➤➤ apply coaching and mentoring techniques to develop organizational talent; ➤➤ design a long-term care environment and culture that fosters individual motivation; ➤➤ use communication techniques that minimize communication barriers and optimize the transfer of information; ➤➤ apply the strategic problem-solving process to achieve goals for a long-term care organization; ➤➤ apply the concepts of person-centered care to improve resident/client outcomes; ➤➤ explain the factors that contribute to high performing interdisciplinary teams; and ➤➤ discuss a long-term care leader’s role in creating organizational culture and promoting cultural humility. 269 Copying and distribution of this PDF is prohibited without written permission. For permission, please contact Copyright Clearance Center at www.copyright.com.

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L e a d er s h i p V e r s u s M anage ment

leadership The process of understanding the environment and creating the conditions for others to be influenced to behave and act in ways that support the mission, vision, and goals of the organization.

management The process of getting things done through and with people by directing and motivating the efforts of individuals toward common objectives.

The need for high-quality, energetic, proactive and competent long-term care leadership is intensifying as the regulatory environment becomes more complex and the number of adults aged 65 or older as well as people living with disabilities increases. It is important to define and distinguish the concepts of leadership and management and the interconnectedness of the terms. Leadership is the process of understanding the environment and creating the conditions for others to be influenced to behave and act in ways that support the mission, vision, and goals of the organization. (The mission, vision, and goals themselves are discussed later in this chapter.) Ledlow and Stephens (2018, 14) define leadership as the “dynamic and active creation and maintenance of an organizational culture and strategic systems that focus the collective energy of both leading people and managing resources toward meeting the needs of the external environment utilizing the most efficient, effective, and efficacious methods possible by moral means.” They indicate that a leader must be visionary and externally focused to be able to monitor the environment. A leader must also have the skills necessary to implement changes within the organization to succeed within that environment. Dunn (2021, 16) defines management as “the process of getting things done through and with people by directing and motivating the efforts of individuals toward common objectives.” The five key functions in the management process are the following (Dunn 2021): ◆◆ Planning—the process of charting a course of action for the future, systematically incorporating a mission for the organization and desired goals and objectives; ◆◆ Organizing—determining how to carry out the plan by coordinating efforts and activities to achieve the organization’s goals and objectives through use of resources; that is, by designing a structural framework that accounts for the positions needed to fulfill the work and the duties assigned to those positions; ◆◆ Staffing—the range of activities, programs, and policies related to recruiting and hiring employees who are qualified to fill the necessary positions, training those employees, assessing their work performance, and helping them develop within the organization; ◆◆ Influencing—initiating action in the organization through leading, motivating, and communicating with clinical and administrative staff (also known as directing); and ◆◆ Controlling—regulating the organization’s performance by measuring (and, if necessary, correcting) activities to ensure that the plan is being carried out and progress toward objectives is being made.

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An important distinction between leadership and management is the focus. Managers focus on organizational policies, standards, guidelines and processes. They must know the daily routines and productivity of the people who report to them and facilitate their actions so that tasks can be completed efficiently and effectively. Leaders also have a broader focus on developing the organization’s culture and strategic planning systems to maximize success and meet the needs of the external environment (Ledlow and Stephens 2018). A long-term care administrator needs to manage the resources and work processes in their organization to ensure that their residents and customers receive the care and services necessary to attain or maintain their highest practical physical, mental, and psychosocial well-being, as required by the Centers for Medicare & Medicaid Services (CMS 2017). For example, they are expected to act as a manager and carry out the duties to manage their budget, staffing, census, quality of care metrics, and day-to-day operations. That same administrator is expected to act as a leader in taking responsibility for the creation of the behaviors, attitudes, beliefs, values, and norms that will become the organization’s culture. Long-term care administrators often manage processes and lead culture change initiatives, thereby performing both management and leadership functions. As much as the functions of leadership and management differ, both are critical to balance, coordinate, and meet the organization’s mission and vision. The administrator’s role and functions are discussed in greater detail in chapter 11. One misconception of leadership is that the title is only a function of those in positions of authority. Other individuals within the organization may act as informal leaders in their roles through proactively sharing information, guiding their team, sharing their knowledge and skills, and serving as a role model in providing good resident and client care. For example, a nursing assistant can function as a team leader for the unit through showing new staff where equipment and supplies are located, sharing key information on resident care needs, and exemplifying the organization’s culture and norms. In this regard, leadership is considered a skill and ability rather than a position of authority. Formal leaders in long-term care should look for these skills and abilities in such informal leaders and engage these staff members when building teams. The term administrator is used more commonly in long-term care than other healthcare organizations (e.g., health systems, medical group practices, acute care hospitals); the term executive director may also be used. In some organizations, the administrator may be assisted by an assistant administrator who handles additional management responsibilities to ensure quality of care, satisfaction levels, and profitability. Other organizations may have an administrator-in-training, an individual who trains under the supervision of an administrator prior to licensure or certification. All state licensed skilled nursing facilities (SNFs) in the United States are required to have a licensed nursing home administrator in charge and responsible for the SNF’s operations (CMS 2017). States vary in whether an assisted living administrator is certified or licensed by the state. Most states require academic coursework,

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administrator An individual in control of and responsible for an organization’s operations, and a key member of the leadership team. Also known as executive director.

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specialized education, and administrator-in-training experiences, in addition to passing an exam, prior to becoming a licensed nursing home administrator or a certified or licensed assisted living administrator. In contrast, most home and community-based service leaders are not required to be certified or licensed, and training programs for staff depend on state regulations. Regardless of the type of long-term care organization, an administrator is legally responsible for operations as directed by the community’s owners or governing board.

L e a d er s h i p R ol e s Long-term care leaders are responsible for establishing the goals of the organization in coordination with their governing body (if they are not-for-profit) or corporate office (if they are a proprietary, for-profit). (The role of the governing body is discussed in greater detail in chapter 11.) These leaders help develop the organization’s mission, vision, and operational policies, monitor the organization’s programs and financial performance, hire and evaluate the organization’s administrator or similarly titled leader, and provide resources to accomplish the organization’s goals. The goals are the broad-reaching, larger aspirations of the organization. They should be challenging yet achievable and align with the mission, vision, and values of the organization. Leaders are responsible for aligning the organization’s actions toward achieving the goals, which are often accomplished through the strategic planning process (as described in the next section). The strategic planning process should include the stakeholders who are invested in the organization’s success and outcomes. Leaders select the stakeholders who participate in the process and provide them with guidance on their responsibilities during the planning process. Examples of stakeholders who are invested in the organization and its future include the medical director, residents, family members, nursing staff, department directors, marketing and outreach staff, and board members (or corporate office staff). The management of the strategic planning process begins with a plan, which guides the team on the steps and processes to be completed (Burns, Bradley, and Weiner 2020). The long-term care leader is responsible for and guides the initiative by providing the structure, processes, motivation, influence, direction, resources, and persistence and removes obstacles. Evidence indicates that the best way leaders, including long-term care leaders, can maximize their strategic planning efforts is to focus on their customers and their employees (Hill, Schilling, and Jones 2016). Leaders need to continually look for opportunities to increase customer satisfaction. Research on employee satisfaction and intent to leave provides leaders with an array of tools and processes to increase employee satisfaction. Among the factors that have been shown to positively influence employee satisfaction and intent to stay are the work environment (Zhang et al. 2014), human resources policies (Zhang, Punnett, and Gore 2019), a culture of caring (Casper, Le, and McGilton 2019), and inclusion, respect, and autonomy (Perreira et al. 2019).

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EXHIBIT 10.1 Stakeholder Relationships

External Stakeholders Governing Boards

Community Members and Leaders

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Hospitals

Residents Internal Stakeholders

Supplies Vendors Family

Other Long-Term Care Organizations Staff

Marketplace Competitors

Physicians and Midlevel Providers Regulators

Long-term care leaders are also responsible for relationships with external stakeholders. Key external stakeholders include the governing board; hospitals; other long-term care organizations; competitors in the marketplace; regulators; physicians and midlevel providers; food, medicine, and supplies vendors; and community members and leaders, as illustrated in exhibit 10.1. The corporate office of a long-term care provider can also be an external stakeholder. Long-term care leaders must strategically manage the relationships with the key stakeholders. For example, strained relationships with the corporate office staff will cause tensions to rise and potentially create conflict, when the relationship should be mutually beneficial and supportive. Leaders are responsible for building relationships with corporate stakeholders and leading staff in building those relationships. Strong communication networks with these stakeholders are essential for highquality resident and client care. Leaders should ensure that standardized processes are in place to share resident or client health information, clinical indicators (e.g., infection rates, number of decubitus ulcers, incidence of falls), new admissions, and regulatory and or policy changes. Long-term care organizations are part of their local and regional environment and therefore must understand their environment. This understanding is often accomplished by assessing and identifying the key stakeholders. Long-term care leaders must continually assess the environment and adapt and change as the environment changes.

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strategic planning The process by organizational stakeholders that assesses the internal and external environment to determine the opportunities for future growth and areas for improvement.

mission An organization’s reason for existence and why it does what it does.

vision Where the organization strives to be in the future while in alignment with the organization’s values.

values The formally expressed ethical principles and behavior of the organization and its members.

goals A set of desired outcomes including actionable items an organization strives to achieve that contribute to its strategic planning and align with its mission and vision.

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S t r at e g ic P l a n ni ng At some point, an organization’s governing body, management team, and stakeholders engage in strategic planning, the process by organizational stakeholders that assesses the internal and external environment to determine the opportunities for future growth and areas for improvement. The foundation of the organizational strategies are the mission, or purpose of the organization, the vision, or where the organization would like to be in the future, and values, the ethical principles and behaviors for the organization. Values shape the attitudes of employees and should embrace the expectations of the stakeholders. The selected values should be visible, memorable, and embedded in the strategic goals, or desired outcomes for the organization (e.g., satisfaction scores, employee evaluations, safety and quality metrics). A search of the internet for “long-term care organization values” produces response words such as caring, respect, dignity, compassion, resident-centered, collaboration, teamwork, honesty, and spirit. A set of goals may also be determined to accomplish in light of changes in an organization’s external environment. One framework often used for goal setting is the SMART framework: goals must be specific, measurable, attainable (or action oriented), realistic (or result oriented), and time limited (Dunn 2021). The mission statement identifies and describes an organization’s reason for existence and why it does what it does. Key components include the product or services offered, standards embedded in producing the service, and whom (demographic or population) is served. The mission statement reflects the values, includes an emotional appeal that stakeholders can act on, and is measurable, definable, and actionable (Burns, Bradley, and Weiner 2020). The mission statement should be distinctive, comprehensible, and actionable by stakeholders. Examples of mission statements for long-term care organizations are presented in exhibit 10.2; note how each describes why the organization exists and urges its employees to action. The vision statement describes where the organization strives to be in the future. It, too, should align with the values and be realistic and achievable yet challenging. A vision statement should be concise and clearly written; it should motivate and direct the actions and behaviors of employees toward that future state. Using a systematic process to gather, analyze, and communicate relevant data, leaders identify the factors that can affect the organization’s ability to achieve its mission, vision, and goals. A situational assessment must objectively look at the internal and external environment of the organization. One commonly used tool in the strategic planning process is the SWOT analysis, which identifies and evaluates the internal strengths and weaknesses and the external opportunities and threats. Often the SWOT elements are presented visually in a chart with four squares or quadrants. The SWOT analysis identifies gaps in goal performance or mission achievement. The strategic problem-solving approach can be used to integrate goal and objective setting with organizational actions to achieve those goals and close the identified gaps. It is designed to help the organization move from its current state

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Oakview Medical Care Facility Oakview Medical Care Facility provides a broad range of high-quality, comprehensive, skilled long term health care services to the residents of Mason County, Michigan.

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Exhibit 10.2 Sample Mission Statements

• We promote, encourage and support each resident’s individual dignity, privacy, rights and independence. • We strive to create a home-like environment which preserves and upholds each resident’s quality of life. • We seek to maximize each resident’s level of function, with the ultimate goal of enabling them to return home to their family and community. • We strive to provide quality care that will meet or exceed state and federal health care standards. Legend Senior Living Legend Senior Living is dedicated to providing the highest standards of quality of service, environment, and care to residents and their families while providing value and accountability to all our stakeholders. We work to serve the needs of the whole person: physical, mental, and spiritual. We are committed to providing a positive reinforcing work environment that recognizes the value of all staff and fosters individual growth and improvement. We recognize that our success depends on our ability to live out our mission and keep our commitments. Sources: Legend Senior Living (2022); Oakview Medical Care Facility (2022).

SWOT analysis A situational assessment tool used to identify

to the desired state, or from performance not meeting a set goal to performance achieving and surpassing that goal. The mission, vision, and values guide the processes leaders use to create alignment to achieve the organization’s goals. The strategic planning process ensures that stakeholders are involved in, contribute to, and buy into the strategic direction and established goals toward achieving the vision that reflects the mission.

internal strengths and weaknesses and external opportunities and threats for an organization.

person-centered care A care approach that

O r g a ni z at i on a l C ult u r e

a nd

C u lture C hange

Long-term care leaders influence the culture for the organization through their behaviors, actions, communications, and displayed values. Change in leadership may bring a change of culture for the organization. Culture change can also come from external sources, as occurred with the shift in healthcare away from a paternalistic approach toward personcentered care, which CMS (2017) defines as meaning to “focus on the resident as the locus

focuses on the resident as the locus of control and supports the resident in making their own choices and having control over their daily life.

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person-centered leadership The ability to create a context in which each person has the potential to be the best they can be for the world.

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of control and support the resident in making their own choices and having control over their daily lives.” Fox (2017, 50) defines person-centered leadership as “the ability to create a context in which each person has the potential to be the best he or she can be for the world.” Person-centered leaders embrace leadership as a behavior, not a title. Recognizing the potential of the people they interact with and expressing a desire to help them grow, person-centered leaders share decision making and authority so that teams have the information they need to make decisions. Leaders influence the adoption of culture change, including the culture and practice of person-centered care through their leadership style and actions. Changing from the outdated institutional management and human resources mechanistic and hierarchical processes to a caring community requires leaders to create a climate of trust and respect. Research on leading change shows that leaders must be change agents, or as McClelland terms them, as having achievement motivation whereby they address problems, achieve goals, are interested in accomplishments, and are constantly thinking about improvement (Dye 2010). Long-term care leaders are responsible for creating a culture of inclusiveness and accountability. Inclusiveness involves making sure people feel valued and help one another grow, and accountability ensures that each member is responsible and follows through their objectives. Person-centered leaders have high expectations and help their employees achieve those expectations and ultimately goals by ensuring that through transparency and training they have the information, knowledge, and skills to meet those expectations. Leaders influence culture change by building relationships with and among their staff, by maintaining open and transparent communication networks, and by inviting and encouraging the diverse opinions of others in the discussion. Long-term care leaders are responsible for creating a context for this culture change to be successful—that is, by changing leader behaviors and beliefs. Leaders create a climate of collective and individual ownership, while staff are provided the knowledge, skills, tools, and information to own the process, make decisions, and take responsibility for their community (Fox 2017).

M a n a g in g I n t e rna l W orkf o rces engagement The condition that fosters involvement, commitment, passion, enthusiasm, focused effort, energy, and the employee’s willingness to perform tasks above and beyond what is required to help the employer succeed.

Long-term care leaders must lead people and manage resources to ensure a seamless and harmonious operation with all participants working toward a common goal—the organization’s mission. To do so, leaders must understand who the myriad of internal stakeholders are, understand their differences, and be able to engage and motivate each of them using incentives that they value. (This understanding factors into the critical tasks of both recruitment and retention; see the accompanying “Did You Know?” sidebar.) Sperry (2018, 20) defines engagement as “the condition that fosters involvement, commitment, passion, enthusiasm, focused effort, energy, and the employee’s willingness to perform tasks above and beyond what is required to help the employer succeed.” Long-term care leaders can create a culture of engagement by providing work that is challenging, fostering

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relational coordination, providing opportunities DID YOU KNOW? for growth and increased knowledge and skills, Recruitment and Retention as a Leader’s Priority and ensuring that expectations are clearly stated and understood and feedback is timely (Sirisetti 2012). A leader’s interest in an employee’s wellRecruiting and retaining staff is a priority for long-term care being is critical for employee engagement (Perreira leaders because the direct care workforce provides the majoret al. 2019). Employees should feel that they are ity of the care and services for clients or residents in their care. valued and that their contributions matter. Of Direct care worker commitment and job satisfaction are related utmost importance is for the leader to establish to having supportive supervisors, a healthy work-life balance, a culture of trust, respect, and honesty (Ledlow and worker engagement. and Stephens 2018). Commitment is often considered a component of engagement and has been defined as “the state or an instance of being obligated or emotionally compelled” (O’Malley 2000, 27). Leaders need to be committed to their commitment employees and their well-being, to create a culture for employees to be committed to one The state or an another and subsequently committed to the clients or residents. Employee commitment instance of being is critical for long-term care organizations to change the long history of high turnover and obligated or emotionally compelled. low retention rates. Commitment can be fostered through leadership styles and culture that focus on employee needs, such as acceptance, esteem, security, growth, and fair compensation (O’Malley 2000). The long-term care workforce is relatively racially and ethnically diverse and will be caring for an increasingly diverse client population (Bates, Amah, and Coffman 2018). A long-term care leader needs to be trained in cultural competence to best understand the impact that culture and traditions may have on members of their workforce. Recall from chapter 8 that, as defined by the Agency for Healthcare Research and Quality (AHRQ 2019), cultural competence is “a set of congruent behaviors, attitudes, and policies that come together in a system or agency or among professionals that enables effective interactions in a cross-cultural framework.” However, cultural competence bears two main problems. First, a person could obtain categorical knowledge about a group of people, which could lead to stereotyping cultural humility and bias. Consequently, it is important for leaders to have cultural humility, a dynamic A dynamic and lifelong and lifelong process focusing on self-reflection and personal critique, acknowledging one’s process focusing on own biases, and understanding the complexities of identities (Khan 2021). Second, cultural self-reflection and competence denotes that there is an end point to becoming fully culturally competent. personal critique, acknowledging Cultural humility acknowledges that a healthcare professional will never be fully compeone’s own biases tent about the evolving and dynamic nature of a person’s experiences and should be open and understanding to conversations that genuinely attempt to understand a person’s race, ethnicity, gender, the complexities of sexual orientation, socioeconomic status, education, social needs, or other aspects of their identities. background and belief system (Khan 2021).

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coaching A supervisor-led series of interactions with an employee to enhance a specific set of skills and abilities identified as deficient.

mentoring A relationship based on trust and mutual respect between a skilled and experienced individual not in a supervisory role with the individual desiring to build specific knowledge, skills, and abilities. The mentor acts as a confidant, role model, and often counselor for the

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To develop skills and improve performance, long-term care leaders coach and mentor their employees. Coaching is a primary responsibility of long-term care leaders to build the skills and competencies of their employees and is a key strategy to improve productivity and employee engagement (Sperry 2018). In many healthcare settings, leaders are evaluated on their coaching skills and their team’s development, and longterm care is no exception. Managerial coaching is a goal-focused one-on-one activity to assist an employee in learning specific skills, improve their performance, develop their interpersonal behaviors, and enhance knowledge and skills for career advancement. Jones, Woods, and Guillaume (2015) found that employee skill development was enhanced and learning increased when they were coached by their manager or other leader within the organization. For effective coaching to occur, long-term care leaders need to learn, practice, and develop their coaching knowledge and skills, just as they would with any other competency. Mentoring, although similar to coaching, is typically a learning experience with a skilled individual outside one’s home organization. It provides an opportunity for the mentor to share their knowledge, skills, and experiences with individuals who strive to grow and learn yet are not typically subordinates. The benefits of mentoring are twofold. First, for the mentor, it provides a way to learn about new industry trends, opportunities for self-reflection, and a time to share lessons learned and challenging experiences. Second, for the mentee, it is an opportunity to ask questions, discuss in confidence a situation or troubling experience, learn where to find information, be informed about best practices for self-development, and receive constructive criticism from someone other than their supervisor. A formal mentoring program often includes specific goals, objectives, and activities to enhance professional growth and knowledge, regularly scheduled virtual or face-to-face meetings, and a timeline.

mentee.

L e a d er s h i p T e a m Hill, Schilling, and Jones (2016) propose that to optimize strategic planning, leaders should also look to their management team for input in the strategic planning process and strategic direction. The leadership team in long-term care organizations will vary depending on the level of care, licensure, type of ownership, and size. The team may include clinical and administrative leaders such as the administrator and director of nursing as well as corporate office consultants, and it may meet daily to discuss daily priorities, action items, and individuals responsible. The management team includes department directors (i.e. environmental services, and dietary) and key personnel in departments with only one or two people (e.g., social workers, activities director, and maintenance). An administrator often reports to a regional director or vice president, who works in collaboration with others on customer or resident assessment, reimbursement, quality and safety outcomes, and revenue stream

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management. Variations in these common structures are found throughout the variety of long-term services and supports and will depend on ownership, size, and level of care. Long-term care leaders can strengthen the strategic direction and plan by including their management team in the strategic planning process and valuing their input (as discussed further in chapter 11). In the complex and dynamic world of healthcare, no single individual can possess all the knowledge and skills necessary to provide care and services. Teams are required to deliver high-quality, safe, effective, and timely care and often are interdisciplinary, composed of people with diverse degrees, varied expertise, and sometimes specialized skills. They may also be cross-functional, to encourage staff to learn other types of responsibilities, and self-managed. Examples of teams in long-term care include a leadership team, work team, care plan team, quality assurance and performance improvement team, infection control team, and the team of direct care workers on a unit who provide resident care. The creation of the organization’s teams is one of the most critical tasks for the long-term care leader. The leader must determine the function(s) to be completed by the various teams, the skills needed on each team, the team membership, the type of team, and decisional authority of the team. For example, the leadership team is a permanent team, and members will only leave the team when they leave the organization. An example of a work team is a team of clinical professionals providing care and services to consumers or residents. This team’s function or task is to support their clients’ daily care needs and medical care such as medication administration, wound care, or blood sugar monitoring. Each member of the team is responsible for specific tasks and documents any change in a client’s status. To function as a cohesive team, it needs leadership, a method to communicate information between team members, and—of utmost importance—respect and trust. Another type of team found in long-term care organizations is the care plan team. This team will include a registered nurse, who is often responsible for completion and submission of assessment data, and other clinical or administrative staff. The individuals who participate on care plan teams may rotate. A long-term care organization with social workers will have the social worker familiar with the resident and family attend the care plan meeting. Other attendees may include the representatives from resident activities, therapy, and nursing. Care plan teams will have more membership fluidity than other types of teams used in long-term care, which can impact team dynamics, communication, learning, and performance. Leaders must therefore work to create trusting and cohesive teams through setting high standards for the team, modeling the expected behaviors, continuously training team members on team roles and participation, and monitoring team activities, performance, and team member interaction. Teamwork is essential not only in the day-to-day operations of the organization but also during critical situations such as

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CURRENT ISSUE Teamwork During the COVID-19 Pandemic

As the COVID-19 pandemic developed and spread, many teams in long-term care communities implemented new strategies for communication, collaboration, and innovation. Team education became essential as guidance, recommendations, and clinical evidence regarding COVID-19 changed constantly. Keeping all members of the team on the same page when they received information from different sources was challenging. Because of nurse aide shortages, temporary nurse aide programs were approved by CMS to meet the needs of communities, nurses worked as aides if needed, and many staff members worked multiple shifts to ensure the safety of residents. Some organizations rented apartments or hotel rooms nearby so that staff could protect their families and be available to their workplace around the clock. Others sent food, and staff volunteered to go shopping for their team members who became sick and were not able to work. Transparency, resilience, and empathy became essential elements of daily work life (Kaldy 2021).

an emergency or a national health crisis (see the related Current Issue sidebar “Teamwork During the COVID-19 Pandemic”). Daily huddles (short meetings to exchange information between shifts) and regular team meetings are two processes used to create a caring community wherein staff and residents address concerns. In these meetings, the structure of the long-term care administration is systematically dismantled to allow for informed, engaged, committed, and empowered staff to care for one another and the clients and residents for whom they are responsible. The transition from an institutional hierarchy with departments and top-down management to cross-functional, self-managed community teams requires training and letting go of authority and control paradigms. A key to a team becoming a high-performing team is the organization’s culture. Team members should share a vision of the purpose and function of the team to coordinate their efforts toward the same goal. Their focus should be on achieving the expected outcome and clarifying the reason for the collaborative activities and communication. Team members need to believe that they can achieve the high standards set by leadership and work collaboratively to coordinate activities to meet those standards. Team members should have the skills and knowledge necessary to achieve the goals, including both technical skills and interpersonal skills, and they must feel empowered to use them.

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C ommu n ic at i o n Effective communication is essential for all healthcare leaders and is the foundation for all relationships, personal and professional. Communication is also the foundation for interdisciplinary teams and can help to provide high-quality resident or client care and services. Breakdowns in communication have been linked to medical errors and may contribute to harm or even lead to death (CRICO 2018; White 2016). Long-term care leaders communicate throughout the day in various ways with an array of people. For example, they typically say hello to residents or clients, talk to families and staff, respond to e-mails from their supervisors or a regional vice president, listen to staff during the morning huddle and provide suggestions, write policies and procedures, and greet guests who are interested in a tour of the building. For these reasons, long-term care leaders need effective oral and written communication skills. Communication involves a sender and a receiver of information. Distortions of messages may occur during this exchange. The key to effective communication is to identify the audience for whom the message is intended and then develop that message according to the audience’s values, interests, and cognitive level (Burns, Bradley, and Weiner 2020). Barriers

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C omm u n i c at i o n

Leaders should understand the barriers to effective communication and the strategies useful to overcome them to ensure that the intended message is the one received. A leader who systematically turns barriers into assets will be able to view the situation from a stakeholder’s perspective and develop a communication strategy. Five barriers to effective communication include negative or ambiguous relationships, poor credibility, conflicting belief systems, conflicting interests, and communication mismatches (Shell and Moussa 2019). Leaders establish and nurture relationships by showing interest in others, taking the time to learn about what is important to them, which reflects their interests and values. So long as the leader stays within professional bounds, showing interest this way leads to a more trusting relationship and helps minimize ambiguity in communication. A leader’s credibility is based on others’ perception of the leader’s competence, expertise, and trustworthiness. Trust is a pivotal component of relationships and communication. Poor relationships resulting from a lack of trust between parties or groups of people inhibit the sharing of information (e.g., resident needs or preferences), the opportunity to discuss a topic (e.g., work shifts, lunch options), and acceptance of a message as truthful (e.g., salary raises next month, rewards for exemplary contribution). A leader gains competence by following through on their word, acting as pledged, and being reliable. Credibility is extremely fragile and can be lost quickly as a result of poor judgment, a single misstep, or a miscalculation because it rests on how others view the leader’s character, not necessarily on their objective qualities.

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Stakeholder interest is critical in how a leader communicates and how the message is received. People tend to pay closer attention to information that they have an interest in and less to things they perceive as not having a consequence for them. Long-term care leaders must recognize an individual’s self-interest when planning to communicate various messages. For example, training on resident transfers is important for nurses and nursing assistants but of little interest to office staff who typically do not provide resident care so the message should be targeted to those most affected. Conversely, information on the new payroll system and dates when paychecks will be available will interest all employees and therefore should be disseminated to everyone in the organization. Communication style—that is, how a message is delivered—is just as critical as the content of the message and will contribute to the receiver’s interpretation and acceptance of its content. The delivery of verbal communication is compounded by body language, tone of voice, facial expression, and the speaker’s interest, all of which contribute to the way a message is perceived. For example, during morning huddle, leaders set the tone through not only the exchange of information but the way they stand in the huddle, look at their team members, use an even tone of voice, and have warm and kind facial expressions. Leaders should strive to use clear, straightforward speech that can be easily understood by others, regardless of their level of clinical knowledge or language proficiency. Avoid slang, which can be confusing to people from a generation or cultural background different from the speaker’s. Some information should be communicated both verbally and in writing to ensure that access to the information is available to all stakeholders. Leaders should carefully select the delivery mode through which the message will be communicated to ensure that it is perceived as intended. Conflict Management

With a long-term care workforce that is multicultural and multigenerational, conflicts between members of a long-term care organization may occur, or between staff and the clients or residents and the families that they serve. Stressors in the internal or external environment can also cause conflicts to arise, such as the need to respond to emergencies or disasters in the community. Conflict cannot always be avoided, but it can serve as a valuable learning experience when it raises awareness of processes and performance that can be improved. Interpersonal conflicts typically revolve around one of the following four scenarios: ◆◆ Personal differences ◆◆ Deficits in information ◆◆ Role incompatibility ◆◆ Stress

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It is important to defuse a conflict quickly once it arises. A five part strategy to defusing conflict involves the following (Greengard 2018): 1. Gather all stakeholders. Assemble all the involved parties, get the issues out into the open in an unbiased, nonjudgmental way, and encourage all individuals to participate. 2. Listen. Facilitators and mediators must provide undivided attention to all participants in a dispute. Eye contact and body language confirm engagement. 3. Acknowledge. Communicate an understanding of the fundamental issues. This often involves repeating key statements or a facilitator asking if they understand correctly. 4. Validate feelings. Understanding the issues that led to a conflict is not the same as acknowledging the feelings behind them. Confirming feelings of frustration, anger, or anxiety helps participants feel understood. 5. Apologize. The ability to apologize for mistakes, errors, and problems helps people move on and let go of resentment and anger. Long-term care organizations should have a structured policy and process for resolution of conflicts, as well as training for managers in these tools. These processes can also be used to identify people who exhibit toxic behavior and then reduce their influence through use of private discussions or mediated face-to-face discussions between conflicting individuals and groups (Boss 2015). In this way, an organization can build relationships based on a solid framework of communication. T ool s

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Long-term care organizations establish communication networks to manage the exchange of information and effective communication. Technology such as an organization’s intranet, e-mail system, and phone system allow for communication both synchronously (in real time) and asynchronously (in different time frames). Access to multiple levels of information is critical for communication to occur. The medical record is a mode of formal communication between the various staff providing care and services to and for the organization’s clients. It contains information such as age, diagnosis, cognitive ability, mobility, treatment protocols, medication administration, and notes from nurses and physicians. This record allows for caregivers to communicate with one another on changes in status, diagnostic or treatment needs, and preferences. Access to information is essential for communication to occur; long-term care leaders are responsible for the creation of and maintenance of the communication networks within their organization.

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A L oo k A h e a d Administrators must be prepared to adjust to a rapidly changing healthcare environment in which collaborative leadership and organizational culture are keys to success. Recognition of person-centered care as well as new challenges in workforce management are particularly important in light of the COVID-19 pandemic. Resilient, empathetic leaders with good communication skills will work with interdisciplinary teams to provide innovative forms of care with great use of technology applications.

For Discussion 1. Identify the internal and external strengths, weaknesses, opportunities, and threats faced by a long-term care organization with which you are familiar. Does this facility have goals and a strategic plan? Do administrators communicate this information to their staff and the public? If yes, how? If not, why not? 2. Describe the leadership behaviors most conducive to moving long-term care organizations toward more person-centered care. Discuss two leadership qualities that you believe long-term care administrators must possess to advance changes toward this approach. 3. Describe the leadership practices necessary to form an interdisciplinary team that performs well in a long-term care organization. 4. What are some barriers to communication that can impact staff performance and resident care outcomes? Describe how to overcome these barriers. 5. Teams are used extensively in long-term care. Describe how interdisciplinary teams can be used to implement person-centered care in long-term care organizations. 6. Describe the benefits of coaching. Who benefits from the coaching experience? Discuss why all long-term care leaders are expected to be coaches for their staff. 7. Search the internet for three long-term care organizations’ mission, vision, and values statements. Describe the similarities and differences between them. What do they tell you about the organization? 8. Discuss why a long-term care administration should build relationships with external stakeholders. 9. Describe how to build commitment and align staff behaviors while implementing a culture change toward person-centered care.

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Sedina Bosnick has been the administrator of Harborview for six months. Prior to her arrival, the 110-bed nursing home had been under the leadership of an autocratic leader who used a strict hierarchy of authority. During the past six months, Sedina has spent time with each of the department directors to learn about them, their staff, and their department’s operations. The director of nurses resigned within her first 45 days, but luckily for Sedina, the assistant director of nurses, José Martín, was willing to step up and accept the role of interim director of nurses. José is a quiet man who has been with Harborview for ten years, working first as a hall nurse and then an evening supervisor before being promoted to assistant director of nurses. He is well liked by the other nurses and nursing assistants, he is easy to talk to, he has strong nursing skills, and he helps out whenever someone needs a hand. What concerned Sedina the most was José’s leadership skills—she wasn’t sure that he has the skills necessary to lead the nursing department. Harborview has two social workers, Brittany Hayes and Marsha Keller. Brittany was an adult protective services social worker prior to coming to Harborview three years ago and has a very strong personality and sense of responsibility for the care and services provided to older adults. Marsha is a new graduate, and this is her first job as a social worker. Sedina expects that in time she’ll be a strong social worker and advocate for her residents, but right now she needs coaching and mentoring. The activities department is fortunate to be led by Jasmine Mowday, whose strength is her ability to recruit and maintain a strong volunteer base, which enables her to offer many types of programs throughout the week. The residents love to brag about Jasmine’s activities calendar and the array of choices they have every day. The food services department is led by Brian Taylor, who has been with Harborview for five years. He enjoys his work and is often seen talking to residents about their favorite meals. Sedina is unsure of his skills as a manager, however, because the kitchen tends to run over budget each month and the cost per day per resident exceeds the budgeted amount. Every time Sedina meets with Brian to discuss his budget, he has an excuse for being over budget; this concerns Sedina. Harborview contracts with Hospitality Inc. for its environmental services, including housekeeping and laundry services. David Cox is the new environmental services director, having recently replaced the director who had been at Harborview for two years. Harborview, like many other nursing homes was built in the 1970s and has an aging physical plant, making it difficult to keep clean and aesthetically appealing. Sedina is hopeful, although uncertain, that David can lead the environmental services team and overcome the physical plant challenges.

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In her prior nursing home Sedina had implemented person-centered care and would like to do the same at Harborview, but she realizes that before doing that, she needs to build relationships and gain the trust of the staff. Sedina does so by walking the halls at least twice each day and meeting as many staff and residents as possible. She takes the time to learn about each of them, finding out about their hobbies, families, and interests. While on rounds Sedina answers call lights, picks up trash off the floor, helps nursing assistants with resident transfers, helps distribute residents’ meal trays, and visits with resident’s family members. By doing these things, she is showing her staff that she is genuinely interested in them, the residents, and the work environment. To build a person-centered care environment, Sedina has to be seen as a resource bearer, facilitator of change, guide, coach, and resident and staff advocate. With six months behind her, Sedina began holding monthly education sessions in each department on person-centered care. She began with a definition and description of what person-centered care is and how it required trust, open communication, and accountability among all staff members. She described her previous nursing home and how the nursing assistants and residents were involved in making decisions about when and how care and services were provided. She shared that nurses were there to support the residents by doing assessments, administering medication, caring for wounds, and communicating with physicians and nurse practitioners, not dictate the work of nursing assistants. This was unsettling for many of the department directors, who had become accustomed to planning, directing, and ensuring that their area of responsibility was in compliance. José was the first to speak up, expressing his concern about nursing assistants making decisions about resident care. Sedina responded by saying that before nursing assistants would be making any decisions, they would receive training just like the department directors. Brian also spoke up and said that he had a hard enough time meeting resident requests for special meals and staying in budget, asking how he could possibly offer meals for residents at multiple times throughout the day and stay within his budget. Sedina assured him that this was a team effort and he would not be expected to meet resident meal requests on his own and that nursing and activities would assist in identifying solutions. As monthly training continued, Sedina started to include training on working in interdisciplinary teams, including topics on trust, respect, communication, and team leadership. These behaviors were then modeled and expected during all meetings, including care plan meetings, change of shift meetings, and morning huddles. When a teachable moment occurred during a morning huddle, Sedina stopped the meeting and asked the team what went wrong and for some solutions and suggestions for improving care and services for the resident. The focus was always on what was best for the residents. Twelve months after the first education session, Sedina began to see changes in how nurses, nursing assistants, and residents interacted. Nurses showed support and respect for nursing assistants, allowed them to establish their own assignments and determine how they would provide care and services during their shifts, respected their knowledge

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of the residents during care plan meetings, and assisted them with resident care. Sedina also observed improvements in resident meal services. Brian worked with José, Jasmine, Brittany, and Marsha to determine resident preferences and from there established a menu and staffing needs for the dietary staff. Meals became less structured, and residents who wanted to sleep in and eat breakfast at 10:30 a.m. were allowed to do so, and those who preferred a late-night snack rather than dinner were provided with their 9:00 p.m. sandwich. Sedina believed that she had made progress and that with continued focus on a culture of caring and being a caring community, staff would treat one another well and in turn would take good care of the residents.

Case Study Questions 1. How did spending the first six months observing contribute to Sedina’s success in transforming Harborview? 2. How did providing monthly training and modeling behaviors of trust, respect, and open communication contribute to the change in culture? 3. Where did Sedina use coaching?

References Agency for Healthcare Research and Quality (AHRQ). 2019. “What Is Cultural and Linguistic Competence?” Published July. www.ahrq.gov/ncepcr/tools/cultural-competence/definition.html. Bates, T., G. Amah, and J. Coffman. 2018. Racial/Ethnic Diversity in the Long-Term Care Workforce. San Francisco: UCSF Health Workforce Research Center on Long-Term Care. Boss, J. 2015. Navigating Chaos: How to Find Certainty in Uncertain Situations. Brighton, UK: Archer Press. Burns, L., E. Bradley, and B. Weiner. 2020. Shortell and Kaluzny’s Healthcare Management: Organizational Design and Behavior, 7th ed. Clifton Park, NY: Delmar Cengage Learning. Casper, S., A. Le, and K. S. McGilton. 2019. “The Influence of Supportive Supervisory Practices and Health Care Aides’ Self-Determination on the Provision of Person-Centered Care in Long-Term Care Facilities.” Journal of Applied Gerontology 38 (11): 1518–36.

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Centers for Medicare & Medicaid Services (CMS). 2017. “Appendix PP: Interpretive Guidance to Surveyors for Long Term Care Facilities. State Operations Manual. Revised November 22. www.cms.gov/Regulations-and-Guidance/Guidance/Manuals/downloads/SOM107ap_pp_Guidelines_ltcf.pdf. CRICO. 2018. Medical Malpractice in America: 2018 Candello Annual Benchmarking Report. Boston: CRICO. Dunn, R. T. 2021. Dunn and Haimann’s Healthcare Management, 11th ed. Chicago: Health Administration Press. Dye, C. 2010. Leadership in Healthcare: Essential Values and Skills, 2nd ed. Chicago: Health Administration Press. Fox, N. 2017. Lessons in Leadership for Person-Centered Elder Care. Baltimore: Health Professions Press. Greengard, S. 2018. “How Leaders Can Turn Conflict Into Improvement.” American Association for Physician Leadership. Published September 21. www.physicianleaders.org/ news/turning-conflict-into-improvement. Hill, C. W., M. A. Schilling, and G. R. Jones. 2016. Strategic Management: An Integrated Approach. Boston: Cengage Learning. Jones, R. J., S. A. Woods, and Y. R. Guillaume. 2015. “The Effectiveness of Workplace Coaching: A Meta-Analysis of Learning and Performance Outcomes from Coaching.” Journal of Occupational and Organizational Psychology 89 (2): 249–77. Kaldy, J. 2021. “Teamwork Carries the Day During Pandemic.” Provider Magazine. Published April 1. www.providermagazine.com/Topics/Special-Features/Pages/Teamwork-Carriesthe-Day-During-Pandemic.aspx. Khan, S. 2021. “Cultural Humility vs. Cultural Competence—and Why Providers Need Both.” HealthCity Newsletter, Boston Medical Center Health ­System.

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Published March 9. https://healthcity.bmc.org/policy-and-industry/cultural-➤ humility-vs-cultural-competence-providers-need-both. Ledlow, G. R., and J. H. Stephens. 2018. Leadership for Health Professionals: Theory, Skills and Applications, 3rd ed. Burlington, MA: Jones and Bartlett. Legend Senior Living. 2022. “Our Mission.” Accessed May 21. https://legendseniorliving. com/About-Legend/our-mission.html. Oakview Medical Care Facility. 2022. “About Oakview MCF.” Accessed May 21. www. oakviewmcf.com/about/. O’Malley, M. 2000. Creating Commitment: How to Attract and Retain Talented Employees by Building Relationships that Last. New York: John Wiley and Sons. Perreira, T.A., W. Berta, A. Laporte, L. Ginsburg, R. Deber, G. Elliott, and J. Lum. 2019. “Shining a Light: Examining Similarities and Differences in the Work Psychology of Health Support Workers Employed in Long-Term Care and Home and Community Care Settings.” Journal of Applied Gerontology 38 (11): 1595–1614. Shell, G. R., and M. Moussa. 2019. “Overcoming the Five Barriers to Influence.” American Management Association. Published January 24. www.amanet.org/articles/ overcoming-the-five-barriers-to-influence/. Sirisetti, S. 2012. January. “Employee Engagement Culture.” Journal of Commerce 4 (1): 72–74. Sperry, L. 2018. Becoming an Effective Leader in Healthcare Management, 2nd ed. Baltimore, MD: Health Professions Press. White, J. 2016. “How Communication Problems Put Patients, Hospitals in Jeopardy.” HealthCare Business Tech. Published February 17. www.healthcarebusinesstech.com/communication-patient-harm/ (content no longer available).

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Zhang, Y., L. Punnett, and R. Gore. 2019. “Predictors of Nursing Staff Voluntary Termination in Nursing Homes: A Case-Control Study.” Journal of Applied Gerontology 38 (11): 1518–36. Zhang, Y., L. Punnett, R. Gore, and CPH-NEW Research Team. 2014. “Relationships Among Employees’ Working Conditions, Mental Health, and Intention to Leave in Nursing Homes.” Journal of Applied Gerontology 33 (1): 6–23.

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CHAPTER 11

LONG-TERM CARE OPERATIONS Patrick Nicovich, MPA, LNHA, Christopher Johnson, PhD, and Mary Helen McSweeney-Feld, PhD

Learning Objectives After completing this chapter, you should be able to ➤➤ distinguish the types of long-term care communities and the services offered to their customers; ➤➤ describe long-term care delivery models; ➤➤ understand key business operations and clinical care services in long-term care communities; and ➤➤ explain the ways in which administrators play a key role in operations, including managing relationships with employees, residents, families, and external community members and organizations.

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Long-term care communities are designed to provide a variety of support and services to meet a person’s social and health needs. Options range from home support to skilled nursing care. (Detailed descriptions of home and community-based services were provided in chapter 5, and residential settings were covered in chapter 4.) The available options for housing are dependent on the individual’s needs and preferences along with available financial resources and support systems in the family and community. There are a number of differences among the types of care and services offered. Independent living communities for older individuals and people living with disabilities tend to focus on promoting wellness and social interactions among residents; in contrast, nursing facilities typically provide assistance with activities of daily living (ADLs) and specialized health services to residents. This chapter will discuss the range of long-term care services offered in residential communities, along with the structures or settings to deliver designated services. Attention to common operational issues that include business and clinical services care will be discussed in terms of the role and responsibilities of the administrator of the long-term care community. Across the range of long-term care communities, the size of the community affects both the variety of services offered and the number and type of staff involved. The administrator, or executive director, of a residential community often faces similar challenges in meeting the needs of older adults and young persons living with disabilities. Managing staff and available resources to meet client needs requires personal and technical management competencies that stem from training and experience. The impact on the lives of residents on a daily basis is a motivator for many people working in long-term care. For example, in her blog The World According to Dr. El, Barbera (2014) wrote, “Residents express their gratitude for my assistance in various ways. It could be a beaming smile at my approach, finding out from a family member that I’m talked about all the time, or a warm comment. . . . It’s a good reason to get to work every day.” The main challenge that faces the administrator in this environment is coordinating clinical and nonclinical services to meet the expectations of customers and their families. Communication is key to managing care and services effectively and efficiently across the spectrum of services, from aides to administrative professionals. An administrator wears multiple hats in operating a community offering long-term services and supports (LTSS). Experience gained in one area often is transferrable to another. The learning environment for a manager in any of these settings—senior housing, assisted living, skilled nursing, or independent living community—is rich with professional and life experiences that often apply across all types of communities.

Types

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L o n g -T e rm C are C ommunities

As described in detail in chapter 4, four types of residential settings for long-term care are independent living, assisted living, skilled nursing facilities, and life plan communities. Here we present a brief review of these types.

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Independent living is a category of housing options, such as adult communities and congregate housing arrangements, for individuals who are able to live without assistance. These residences often impose age restrictions and may offer social activities, supportive services, and increased security. Active adult communities for those aged 55 or older emphasize convenience and active lifestyle, with lower-maintenance, single-level living, resort-style recreational amenities, planned social gatherings, and other convenient supportive services (Braverman 2019). These independent living communities provide concierge services, security, and transportation support and are frequently managed by a homeowners’ association. Assisted living facilities (ALFs) are communities in which staff help residents with ADLs, coordinate services from outside providers, and monitor activities to help ensure residents’ health, safety, and well-being. These residential care communities provide housing along with 24/7 availability of whatever personal and healthcare services the individual might require (Pearce 2007). A person chooses to move into this setting and may bring with them many of their favorite belongings if they need to furnish their apartment. In the residential setting, a person can continue their accustomed lifestyle in an environment rooted in hospitality—that is, living in an environment with exceptional service and desirable amenities (Bentley 2010). The ALF may be a freestanding, rental model community or may be a service line incorporated into a life plan community’s offerings. In the United States, all states license assisted living communities, while administrators may be licensed or certified to be qualified to run the community, depending on state regulations (AHCA/NCAL 2022). Compliance surveys and enforcement standards vary widely among the states. Skilled nursing facilities (SNFs), often referred to as nursing homes, provide medical, nursing, or rehabilitative services on a residential basis. The range of medical services provided includes post-acute care, rehabilitative services, memory care, and other specialty and supportive services that may be needed to manage comorbidities or disabilities. Individuals in SNFs must show a need for skilled care, and residents may be older adults as well as younger people living with disabilities. Most SNFs are certified to provide services to Medicare and Medicaid beneficiaries, and as such are licensed by their state; administrators must be licensed to run operations. Life plan communities (LPCs), also called continuing care retirement communities, provide comprehensive nursing care and housing options to adults as they age and as their needs change. Assisted living, skilled nursing, and independent living facilities, along with their respective nursing and service components, are all located in one community. LPCs may be freestanding or located near existing SNFs or independent living communities. In general, LPCs often provide options that are available in the local or regional marketplace. In this way, LPCs allow a person to move through the various stages of aging yet remain in one location.

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comorbidities The presence of two or more chronic health conditions in one person at the same time.

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D e l i v e ry M od e l s

f or

L ong -T erm C are S ervices

The service model evident in residential care communities versus skilled care communities reflects different client needs. We will examine these two models and then show how organization charts may be used to illustrate the structure of the organization, including its reporting relationships. S o c i a l V e r s u s M e d i c a l M od e l

Residential care communities provide a social model of service that promotes an active and healthy lifestyle for their residents. Skilled care communities such as SNFs provide a medical model of service in their provision of clinical care needed by residents. ALFs typically provide help to residents with ADLs such as eating, bathing, dressing, toileting, and walking; SNFs or nursing homes provide more health and custodial services to residents. SNFs also provide post-acute care, rehabilitative care, memory care, or long-term custodial care needed to manage comorbidities or disabilities. Since 2010 there has been a movement to provide services that go beyond medical needs of nursing home residents to include client preferences and person-centered care (a concept introduced in chapter 2 and discussed further in chapter 10). Resident direction in choice of services is now a key element of life in the SNF. This expanded service model to include person-centered care requires an organizational structure that creates a positive daily routine for residents and leads to better health outcomes (Galiana and Haseltine 2019). O r g a n i z at i o n C h a rt s

and

L o n g -T e r m C a r e C o m m u n i t y S t r u c t u r e

An organization chart is a graphical representation of the organization’s structure, the chain of command, and the reporting relationships. The typical long-term care organization varies slightly based on bed size and types of services offered. All organizations are designed around functions—a process known as departmentalization—whereby related work functions are aligned together in one unit. The working units—departments—are differentiated from one another based on whether the function serves the organization as a whole or only directly serves the customer or client. Staff departments that support the entire organization may include some or all of the following: Administration or Business Office, Human Resources, Payroll, Marketing, Admissions, Risk Management, Quality Management, and In-Service Education. Line departments directly serving the clients may include some or all of the following: Nursing Services, Social Services, Activities, Rehabilitation Therapy Services, Physical Plant Maintenance, and Environmental Services. The departments included depend on the type of long-term care organization. For example, ALFs typically do not include social services or extensive rehabilitation care that would make such departments necessary but may include a department for specialty memory care services.

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Staff functions—tasks, objectives—may also be divided organizationally into separate departments or combined. The facility size determines staff size. In smaller communities, combining functions is necessary because of budgetary constraints. It is not unusual for staff functions to cross department lines. The administrator of smaller communities is required to perform more functions because the budget of the smaller entity would not support additional staff. Whereas SNF and residential communities are similar regarding organizational structure, the LPC structure differs. LPCs include both the skilled nursing and residential care components along with independent living and, in some locations, an area specializing in memory care. LPCs offer a broad array of options available in the marketplace—independent or active adult retirement living, assisted living (with or without memory support care), and skilled nursing. Typically, the LPC is a larger, more complex business structure that requires a larger administrative leadership team. Exhibits 11.1, 11.2, and 11.3 provide examples of organizational charts for three types of long-term care communities.

B u s i ne s s O p e r ati o n s

in

L o ng -T erm C are C ommunities

Many kinds of services make up the business operations in long-term care communities. Some of these are common to all four types of communities, while others may be specific to only certain types, as noted in the sections that follow. Concierge Services

Concierge services provide hospitality-oriented amenities to individuals living in residential communities. In addition to greeting guests and handling inquiries, the concierge may keep logs of residents coming and going, direct visitors and vendors, handle of mail and packages, help with transportation, make reservations for common rooms, and provide directions in the community. Concierge and staff may also monitor secure access to the facility and accept deliveries. Some long-term care communities monitor the emergency call system for independent living and the fire alarm system annunciator boards. Reception

or

Front Desk

Most long-term care communities have a designated person—a front desk receptionist or the concierge—who greets visitors and staff when they come into the community. This person may greet contractors with the community, accept deliveries, and coordinate family visitation for residents. Because the front desk receptionist or concierge is likely to be the first person a visitor encounters in person or on the phone, the importance of this highvisibility position cannot be understated. The staff must be carefully selected and trained

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CH11.indd 296 Registered Nurses LPN’s

Concierge Services/Reception

© Patrick Nicovich

Certified Nursing Assistants

Unit Managers

Admissions

Transportation

Director of Nursing Services

REGIONAL DIRECTOR (REGION I)

Business Office Manager

FOR PROFIT

Speech Language Pathologist

COTA’S OT Aides

Occupational Therapists

OT

Physical Therapists PT Assistants PT Aides

Cooks Utility Workers Dietary Aides

Production Manager

Waiters Waitresses

SNF/ALF Service Manager

Registered Dietician

Director of Dining Services

Rehabilitation Department Therapy Director PT

Executive Director/Administrator

REGIONAL DIRECTOR (REGION II)

CHIEF OPERATING OFFICER

Marketing

CHIEF FINANCE OFFICER

CHIEF EXECUTIVE OFFICER

Owners/General Partners

Rehabilitation & Skilled Nursing Center

EXHIBIT 11.1 Rehabilitation and Skilled Nursing Center Organization Chart

Volunteer Services

Activities Assistants

Activities Coordinators

Director of Activities

LEGAL COUNSEL

Social Services Designee Housekeeping Coordinator

Housekeepers Laundry Personnel

Social Services Director

Director of Environmental Services

Medical Director & Physician Services

REGIONAL DIRECTOR (REGION III)

Maintenance Personnel

296 D i m e n s i o n s o f L o n g - Te r m C a r e M a n a g e m e n t

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7-3 CNA’S

3-11 CNA’S 11-7 PCA’S

7-3 PCA’S

3-11 PCA’S 11-7 PCA’S

© Patrick Nicovich

Admissions

Memory Care Manager

Assisted Living Manager

Marketing

Business Office

Memory Care

Executive Director/Administrator

Owners/General Partners

Assisted Living Residence

Assisted Living Services

FOR PROFIT

EXHIBIT 11.2 Assisted Living Residence Organization Chart

Volunteer Coordinator

Activities Assistants

Activities & Wellness

Cooks Utility Workers Dietary Aides

Production Manager

Waiters Waitresses

Service Manager

Dining Services

Transportation

Concierge Services/ Reception

Housekeeping

Environmental Services

Contract Therapy and Physician Services Varies by Location

Maintenance

C h a p t e r 1 1 : L o n g - Te r m C a r e O p e r a t i o n s 297

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CH11.indd 298 11-7 PCA’s

11-7 PCA’s

© Patrick Nicovich

7-3 CNA’s 3-11 CNA’s

3-11 PCA’s

LPN Manager

Assisted Living Manager

7-3 PCA’s

Memory Care Unit

Assisted Living Services

DIRECTOR OF RESIDENTIAL SERVICES

NON-PROFIT

Transportation Certified Nursing Assistants

LPN’s

Unit Managers Registered Nurses

Concierge Services/ Reception

Director of Nursing Services

Admissions

Business Office Manager

Executive Director/Administrator

BOARD OF DIRECTORS

LiFE PLAN COMMUNITY

EXHIBIT 11.3 Life Plan Community Organization Chart

Speech Language Pathologist

Occupational Therapists COTA’s OT Aides

OT

PT Aides

Physical Therapists PT Assistants

PT

Rehabilitation Department Theraphy Director

Marketing

Cooks Utility Workers Dietary Aides

Production Manager

Waiters Waitresses

SNF/ALF Service Manager

Registered Dietician

Director of Dining Services

SNF Administrator

Volunteer Services

Activities Assistants

Activities Coordinators

Director of Activities

Housekeepers Laundry Personnel

Housekeeping Coordinator

Maintenance Personnel

Director of Environmental Services

Social Services Designee

Social Services Director

Medical Director & Physician Services

INDEPENDENT LIVING DIRECTOR

INDEPENDENT LIVING

298 D i m e n s i o n s o f L o n g - Te r m C a r e M a n a g e m e n t

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to meet and manage a high volume of visitors while maintaining an attitude that makes them feel welcome. Life plan communities usually have separate buildings across campus, and each has a front desk staffed during the normal business hours. After hours, one centrally located reception area manages the process centrally. Accounting

and

B oo k k e e p i n g

The business office manager (BOM) and other employees in the accounting and bookkeeping area have education and experience in business accounting, Medicare, Medicaid, cost reporting, and managed care contracts. Accounts receivable and payable also are handled in the business office. Human Resources

and

P ay r oll

The human resources and payroll functions are often a responsibility of the BOM. However, in larger operations, they can be organized as a separate department. These functions are covered extensively in chapter 12. H e a lt h I n f o r m at i o n S y s t e m s

and

Medical Records

A long-term care community may have a medical records specialist as well as staff specialized in health information systems and electronic medical records. In smaller departments, they may also be merged with business office operations. Chapter 5 contains a detailed discussion of technology services. Marketing

and

Sales

Whether the long-term community is for profit or not, marketing and sales are critical to meet planned occupancy levels and to keep apartments and beds filled, as resident census drives revenue. The marketing mind-set must be conveyed to all the staff who play a key role in maintaining an acceptable occupancy level. The marketing and sales programs differ greatly between residential communities and skilled nursing communities. With marketing of independent living or active adult living communities and life plan communities, there is a sales or selling orientation as the customer has a lifestyle choice. The prospective client may be considering a move to a community to decrease their time spent on maintenance of their residence and may be looking for amenities and socialization opportunities as well as a more supportive living space for their needs. Senior living sales professionals may be trained in techniques for approaching prospective clients, and

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clinical liaison An individual who markets rehabilitation services to hospitals and healthcare systems, patients, families, and caregivers and ensures continuity of care.

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they may host events that are attractive to members of the community and their families to introduce them to the community and its features. Sales representatives may also be involved in the process of helping a new resident enter the community, including moving from a home as well as move-in services. In skilled nursing communities, a sales approach in the marketing of the SNF is not often needed because the resident and their family usually face an immediate health need. They often have a sense of urgency for placement, which can be met through a clinical liaison for the community who can determine whether the community can meet the individual’s clinical needs. Location near the resident’s or family’s home is important. However, the staffing and care provided outweigh most other considerations. Residential care marketing techniques include direct mail campaigns using postcards or flyers, sponsored events for the community, involvement in civic organizations, social media sites, and digital marketing tools. During the COVID-19 pandemic, the use of social media marketing via community websites; postings on Facebook, Instagram, or Twitter; and online virtual tours have become critical marketing tools. The community’s size can limit the scope of marketing. In small communities, the marketing and sales function may be handled by the administrator with assistance from a business office staff person. Opening a new community requires a temporary marketing/ sales team to meet occupancy goals. Larger communities can afford a full-time marketing/ sales team. Admissions

admissions coordinator An individual who manages activities related to the admitting process in skilled nursing that include staffing and collecting medical and insurance information across nursing, medical, and business units or offices.

Admissions may be coordinated by the Business Office staff, or, for independent living and assisted living communities, the Marketing/Sales staff. The community administrator, the Business Office manager, or a trained staff person processes the required preadmission paperwork. Where there is an organized Marketing/Sales department with its own staff, particularly in residential care, coordination with the Business Office is necessary for contract completion, space availability, and attention to any premove needs. The SNF administrator uses an admissions coordinator to fill empty beds. The coordinator works closely with referral sources collecting pertinent demographic and medical information for review by the Business Office and Nursing Services staff. Referral sources include doctors, social workers, discharge planners, residents’ family and friends, and clergy. Staff are trained in the financial and regulatory requirements related to admission. The majority of new hires for the position of admissions coordinator have a bachelor’s degree and less than one year of experience. Preadmission medical applications are required for both residential care and skilled care to determine suitability of placement. Applicants for independent living in life plan communities are not asked for medical information until there is a need for healthcare services postadmission.

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In SNF, the facility must have complete treatment orders from the attending physician to begin care immediately at the time of admission. Careful planning of transition from an acute care setting captures the needs of the resident, identifies equipment and supplies needed, and provides cost projections for Medicare stays under the Patient Driven Payment Model (PDPM), which is discussed in detail in chapter 15. Other required screenings include the federal Pre-Admission Screening and ­Resident Review (PASRR) for SNFs and any state specific pre-admission testing such as tuberculosis screening are needed prior to admission. PASRR screening is required by Medicare for SNFs to determine whether the nursing home is the most appropriate placement for those with intellectual or developmental conditions. Individuals with intellectual disabilities or behavioral health conditions should be placed in the best treatment environment for receiving care and services (Office of the Federal Register 2006). Financial screenings are needed to evaluate the prospective client’s ability to meet the cost of services requested or healthcare services provided. Financial applications and creditworthiness are evaluated as part of the process.

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Pre-Admission Screening and Resident Review (PASRR) A requirement for nursing homes to determine whether the nursing home is the most appropriate placement for individuals with intellectual or developmental

Care

and

S u p p o rt S e r v i c e s

disabilities.

The type of care available to the resident is the primary difference between residential care and skilled nursing communities. Skilled care provided in nursing homes is under the direction of medical and nursing personnel who manage the multiple health issues that result from comorbidities and disabling conditions. Residential care communities developed assisted living as an option for people who do not require the full-time attention of trained medical staff yet who need support with ADLs. Assisted living offers personal care services where the greatest need is in bathing, medication reminders, dressing, and walking (Pearce 2007). Resident Care in SNFs

Nursing is the largest department in any SNF and includes professional and paraprofessional clinical staff. The classification and number of staff must be sufficient to care for the residents as determined by their individual assessments and plans of care. To adequately staff the SNF, the administrator must consider the acuity, diagnoses, and number of residents. Overall care is geared toward attaining or maintaining each resident’s highest practical physical, mental, and psychosocial well-being. Care and services are to be provided by staff who are competent and demonstrate appropriate skills to provide nursing and related services (Office of the Federal Register 2006). Director of Nursing

The director of nursing (DON) is a registered nurse (RN), preferably with experience and training in geriatrics. In communities that average fewer than 60 residents per day, the

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charge nurse A licensed or registered nurse who manages skilled nursing care for particular unit(s). Duties include supervising paraprofessional

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DON may also work the floor as a charge nurse. Other titles for the DON are chief nursing officer or director of clinical services. The DON is responsible for all clinical aspects of resident care and for the infection prevention and control program. Whereas some states regulate staff-to-resident ratios, the federal requirements address only required RN staffing. The DON reports directly to the administrator. These two positions are the chief management leaders, and a close bond with a good working relationship is essential for meeting standards and ensuring high-quality care.

staff and assisting professional staff

Assistant Director of Nursing

in implementing a

It is increasingly common to designate a licensed nursing staff member as the assistant director of nursing (ADON). Preferably this person is a RN, but some communities allow the individual to be a licensed practical nurse (LPN). The ADON alleviates some of the administrative demands for the DON and serves as a backup in the DON’s absence. The ADON assists in providing weekend oversight coverage.

resident’s plan of care.

Professional and Technical Nursing Staff

The DON recommends staff levels needed and manages the clinical processes and systems through direct and indirect supervision. The nursing staff will include other RNs who function as ADONs, floor RNs, or unit managers. An SNF must employ at least one RN seven days a week for eight consecutive hours (Office of the Federal Register 2006). An LPN primarily serves as the unit charge nurse who provides supervision and direction to the front-line staff of certified nursing assistants (CNAs). LPNs oversee the implementation of the patient care plan, implement physician orders, distribute patient medications, perform treatments, document care given and clinical conditions in the electronic health record, and report changes in condition to the staff RN, DON, or attending physician. Resident Assessment Nurse

An RN is required by regulation to complete an assessment for each resident. The assessment process is an interdisciplinary approach managed by nursing. It plays a pivotal role in both the provision of care and in the facility’s reimbursement under PDPM. This position is commonly referred to in many SNFs as the “MDS nurse” because this nurse handles the Minimum Data Set assessment tool used for determining the level of care needed and the payment for services delivered in nursing homes certified by Medicare or Medicaid. Nursing Aides

Nursing aides are the primary caregivers for residents of long-term care communities. CNAs provide 65 percent of residents’ daily assistance and health-related care (Trinkoff et al. 2016). Nursing aides meet the individual needs of each resident by assisting with bathing,

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grooming, dressing, feeding, hydrating, performing oral care, and moving around the facility. Aides with additional training in restorative nursing use a team approach throughout the facility to promote the resident’s highest practical level of functioning.

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restorative nursing An interdisciplinary and collaborative approach between nursing and

Feeding Assistants

rehabilitation therapy

Federal regulations allow for the use of paid feeding assistants in skilled nursing communities who have completed a state-approved training program. Paid feeding assistants are used for those residents whose needs for assistance at mealtimes is identified in the interdisciplinary team assessment. These assistants work under the supervision of the LPN or RN staff and provide only assistance to those who have no complicated feeding problems such as difficulty swallowing or recurrent lung aspirations or who require parenteral or tube feedings.

related to the delivery of activities that promote a resident’s ability to adapt and adjust to living as independently as possible.

Resident Care in ALFs

The staff needs of an assisted living community are quite different from those of skilled care communities. The care and services offered in ALFs do not require technical or licensed personnel unless specified by state regulation. Some assisted living communities have chosen to offer enhanced assisted living services, which offer higher levels of clinical care along with more credentialed staff such as CNAs and RNs. Such additional services became especially important in some states to better respond to the COVID-19 pandemic (Mullaney 2020). The common approach is the use of universal workers who are cross-trained in all areas of the operation rather than being devoted to just one department. However, as the care needs of ALF residents increase, there is a growing trend to hire CNAs as caregivers. This hiring choice provides the facility with a more versatile worker who is better trained. Licensed nursing staff in skilled care is required, and larger residential care communities may use an LPN or RN as a nurse manager. Medical Services

in

S k i ll e d N u r s i n g

and

enhanced assisted living Higher levels of clinical care and nursing services offered via state waiver in some assisted living communities, especially during the COVID-19 pandemic.

Assisted Living Communities

Medical services in SNFs and ALFs are delivered by a group of providers including a medical director, attending physicians, and such physician extenders as physician assistants, nurse practitioners, and clinical nurse specialists. The providers of medical services are responsible for assessments of residents or prospective residents.

medical director The physician responsible for implementing resident care policies within the long-term care

Medical Director and Attending Physicians

Admissions to an SNF or ALF must be recommended by a physician, and the patient must continuously remain under the care of a physician (for SNF) or a nurse (for ALF) whose credentials depend on state licensing requirements. Skilled nursing as well as life plan communities must ensure that the medical director, who usually has a part-time, contractual

organization. The medical director’s responsibilities should be clearly outlined in either their contract or a job description.

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attending physician The physician designated to provide overall care of a longterm care resident.

physician assistant (PA) A midlevel medical practitioner who works under the supervision of a licensed medical doctor.

nurse practitioner (NP) A nurse with an

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position with the organization, supervises the residents’ care and provides for a backup physician for resident care. A medical director is responsible for reviewing the total plan of care and providing documentation in the clinical record (Office of the Federal Register 2006), The attending physician provides resident care. In ALFs, a nurse may provide initial and ongoing assessment for residents, and adjustments in their service plans as required, and an attending physician may act as a medical director, clinical services coordinator, interprofessional team member, or geriatric care manager, depending on state regulations (Dys et al. 2020). There is a growing trend at larger ALFs or LPCs to offer some physician services on-site, including clinic space and appointment times. Some communities partner with local colleges and universities as training sites for students in nursing, therapy, and other clinical fields. If allowed under state law, the attending physician can authorize others who are not physicians to write orders for diets, therapies, and medications. Physician assistants, registered dieticians, therapists, and pharmacists can write orders in some states. All orders must be countersigned by the attending physician on their next review of the record. Physician Extenders

Physician extenders include individuals trained and certified as a physician assistant (PA), nurse practitioner (NP), or clinical nurse specialist (CNS). They work in collaboration with the attending physician and are not employees of the facility. State licensing boards for their professions outline their scope of practice, which details the skills they must be able to demonstrate and the tasks they may perform. A study by the University of Pennsylvania found a 33 percent increase in the use of physician extenders in long-term care communities from 2012 to 2015 (Ryskina, Polsky, and Werner 2017).

advanced degree who is qualified to treat certain medical conditions. NPs work in collaboration with a medical doctor but without their direct supervision.

clinical nurse specialist (CNS)

Assessments in SNFs

Care is planned for all SNF residents using the MDS (as described in the earlier section regarding the position of resident assessment nurse). RNs and other staff follow a schedule set by regulation to access the resident upon admission and periodically thereafter. The MDS process is interdisciplinary and involves such departments as Nursing, Dietary, Therapy, Social Services, and Activities. A plan of care is individualized for each resident based on the MDS assessment. The MDS is also an integral part of the Medicare reimbursement plan PDPM (discussed in chapter 15).

A licensed or registered nurse with advanced training and experience in a specialty area.

Assessments in ALFs

Prospective residents for ALFs are assessed during the application process to determine the scope of personal care services required, and from that assessment a service plan is

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developed. The service plan is updated no less than every six months in many states, and more frequently in other states as regulations vary. The charges for personal care services that are outlined in the service plan are in addition to the basic rental rate and outlined in the contract. As needs change, the type and cost of services may change. P h a r m a c y , L a b o r at o ry ,

and

C e n t r a l S u p p ly

Three interrelated departments in long-term care communities are Pharmacy, Laboratory, and Central Supply. Pharmacy

Because of comorbidities among older adults, the average number of prescribed medications nationally is seven or eight different drugs, not counting over-the-counter medications (Ruscin and Linnebur 2021). Both residential care and SNF communities provide medication management services for their clients. In residential care communities, residents manage their own medications in assisted living. With the resident’s permission, the assisted living staff may assist the residents by securing their medications, reminding them to take medications, and maintaining documentation. In skilled care communities, the SNF’s role in medication management is more involved. On-site systems for medication management vary, but the most frequent system used is called unit dose, which is managed by a local or a long-term care pharmacy CURRENT ISSUE Medication Challenges in SNFs

Delays in transitioning patients to rehabilitation services in skilled nursing communities can increase hospital readmission, frequently because of medication-related issues after hospital discharge. Research has shown that up to 75 percent of patients transferred to SNFs have at least one medication discrepancy from discharge documentation and the SNF admitting plan (Tjai et al. 2009). In 2014, the Improving Nursing Facility Outcomes using Real-Time Metrics (INFORM) collaborative was formed to address problems of this type and work to standardize processes for discharge. Having a pharmacist monitor the medications of residents through a structured discharge process may reduce medication-related issues and improve satisfaction of patients and their caregivers (Bajorek and McElroy 2020).

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company. All medications ordered by a physician are filled by the pharmacy. The unit charge nurse or medication nurse controls the entire process of receipt, administration, and documentation. A resident can self-administer medications in SNFs if determined to be clinically appropriate (Office of the Federal Register 2006). SNFs are required to contract with a consulting pharmacist, who monitors the accuracy and efficacy of each resident’s drug regimen (see the related Current Issue sidebar “Medication Challenges in SNFs”). Laboratory

The SNF contracts with an outside laboratory for testing ordered by the medical director or attending physician. Minor testing in the facility can be completed under a Clinical Laboratory Improvement Amendment waiver. Residential care clients who need testing may be assisted by the facility to arrange for testing off premises. LPCs offer screenings and minor testing through programs from the SNF on campus. Central Supply

The facility operates a central supply room or area for the storage and management of all nonpharmaceutical medical and nursing supplies. Central Supply is also sometimes referred to as Central Sterile Supply as in some communities there may be sterilization processes for supplies that are reusable and not specified for one-time use. Nursing generally oversees Central Supply. Management of supplies and of the supply chain (the network of businesses that provide essential items to long-term care providers) is important to manage orders, control and track usage, maintain budgetary compliance of expensive supplies, and prevent losses of supplies. Management of supplies became an extremely important function during the COVID-19 pandemic, when infection control required additional supplies of scarce personal protective equipment and changes in emergency supply planning (Bonvissuto 2020b). Social Services

in

S k i ll e d N u r s i n g

The population served in SNFs presents several significant issues that are suitable for intervention and assistance by social service. Skilled nursing is required to meet the medically related social needs identified by the assessment. The facility is required to have a qualified social worker (QSW) if it has more than 120 beds; if not, the facility designates a paraprofessional to serve as the social service designee (Office of the Federal Register 2006). The QSW or designee participates in both the preadmission and care planning processes by completing a portion of the MDS and developing specific approaches to

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identified needs. Residents in need of medical appointments, assistance with finances, and other personal items (clothing, toiletries) can be aided by the social service. Patient education related to medical or personal concerns are within the realm of social workers. Family conflicts or other resident personal issues can be resolved by the QSW or designee through conferences. Social services manage the referral process for outside services not provided by the facility such as dental, podiatry, and mental health care. The QSW can, where appropriate, assist with grief counseling related to changes in living arrangements or loss of family members or pets. Administrators need to be cognizant of the limitations of a qualified social worker’s scope of practice (what their license or credential allows them to do) as they are not trained or licensed to treat behavioral or mental health issues. Discharge planning begins prior to a resident’s admission to the facility. The QSW or designee will facilitate the discharge, ensuring that the location is appropriate for the care needs of the resident. The facility has a legal and ethical duty to provide an appropriate transition of care. (Chapter 3 discusses transitions of care in detail.) Follow-up contact is a best practice to validate that the transition was successful. Communities can be held liable (criminally or civilly) when discharge plans are incomplete or fail and result in harm to a discharged resident.

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scope of practice The extent and limits of practice by a licensed or credentialed healthcare professional as defined by the licensing body or state law.

R e h a b i l i tat i o n S e r v i c e s

Rehabilitation services from physical therapists, occupational therapists, or speech pathologists (as described in chapter 12) may be needed by residents of SNFs or ALFs, but these services are delivered in different ways. holistic approach

Therapy Services in Skilled Care

The mission of a skilled nursing facility is to assist each resident to achieve their highest practical level of physical, physiological, and social function. Post-acute inpatient stay is the most probable entry to an SNF for rehabilitation. Strokes, heart attacks, and surgeries related to broken hips or knee replacement are common reasons to need care in a rehabilitation environment. At the time of admission, the interdisciplinary team is aware of the resident’s needs along with the physician orders for care. Each admission is assessed using a holistic approach followed in the MDS process. At admission, the staff is prepared to provide the care and support needed and initiates plans to assist the resident’s return to their baseline. Options for therapeutic interventions include physical, occupational, and speechlanguage pathology therapies. The facility must provide therapy services through their own qualified staff or by contracting with an outside rehabilitation company. The

An integrative approach of treating the whole person— mental, physical, and social—and not just medical symptoms.

baseline The starting point to assess the cognitive and functional abilities of an individual before an illness or medical event.

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administrator chooses the option that generates the best return on investment. Regardless of payer source, the facility is responsible for meeting the rehabilitation needs of all its residents. Physician orders are needed to evaluate residents for therapy, and a therapy plan is developed with specific goals. Once that plan is approved, therapists use a variety of treatments for the residents to achieve their goals. Therapy sessions conclude when either the goals are met or the resident’s progress plateaus. Therapy Services in Residential Care

The therapy needs of assisted living community residents are met through agreements with home health providers or related companies to provide selected services to individuals onsite. ALFs cannot offer a full-fledged therapy program like SNFs. Therapy is provided under physician orders and is reimbursed under Medicare or paid for out-of-pocket. Some communities include therapists as part of the residents’ wellness programs, the cost for which is included in the monthly fees. The therapists can meet the rehabilitation and maintenance needs of the residents in a therapy or gym environment. Exercise and dance classes help residents improve and maintain balance and dexterity. Dining Services dining services The department in residential or longterm care communities responsible for food services. Also sometimes known as the Dietary Department.

Dietary needs are an extremely important part of dining services offered in long-term care communities, and they are an essential part of any resident’s daily life and quality of care. The Dining Services or Dietary Department supervises preparation of resident meals, nourishing snacks, and food for special events. Acknowledging a resident’s food preferences, having food choices, and maintaining the quality of food are all part of the regulatory structure of skilled nursing communities (Office of the Federal Register 2006) as well as state regulations of ALFs and LPCs. Proper nutrition and hydration are major contributors toward the management of chronic health issues and avoidance of decline in condition. Thus it is critical that the food appeal to the residents. If the community’s food does not taste good, it will not be eaten. If not consumed, the health benefit is not received. Nursing home regulations emphasize having nutritious, well-balanced meals that are not only served in a timely manner but also appealing to the senses of sight and smell (Office of the Federal Register 2006). As one ages, taste buds do change, and older adults may lose an interest in food. Substituting a greater variety and amount of seasonings, as well as encouraging hydration through flavored beverages, may help improve residents’ consumption. Use of fresh fruits and vegetables as part of a “farm-to-table” menu meets the demands of residents who are seeking the kind of healthy, active lifestyle that they were accustomed

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to at home (Regan 2018). To successfully implement farm-to-table dining, most communities utilize the talents of trained chefs and sous chefs. Healthy eating is promoted to the residents, but their requests for the alternative foods and snacks they have consumed throughout their lives should be honored as well. Dining options and hours are flexible to accommodate active lifestyles and schedules. A choice of food venues—restaurant or fine dining, café bistro, or casual bar dining—may improve the residents’ satisfaction with the community. Offering alternative selections to the menu on a daily basis is also well received for such popular items as soup, salads, hamburgers, and pizza. In-apartment delivery from the dining room and concierge-coordinated food delivery from area restaurants are other options desired by the community residents. Around-the-clock free coffee plus beverage and snack bars encourage nutritional intake and provide additional opportunities for resident socialization. Each resident’s food preferences and medical needs must be considered as well. Good communication with residents helps staff meet any medically required dietary needs. The staff follow a diet manual approved by the medical director that may prescribe a particular therapeutic diet (e.g., low-calorie, low-sodium, diabetic, renal) for some residents. In some states, the medical director or attending physician can delegate the ordering of therapeutic diets to a registered dietitian (RD) or a certified dietary manager (CDM). Menus are approved by an RD or CDM, and any substitutes for regular menu items must be of equivalent nutritional value. Some residents may require food consistency accommodation (e.g., pureed, chopped, or soft foods) because of dental issues or various medical conditions that result in dysphagia. Memory care residents may need “finger food” they can handle with their hands because their cognition level may limit their ability to use eating utensils.

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therapeutic diet A diet that is ordered as part of treatment for a disease or clinical condition.

dysphagia A medical term for difficulty in swallowing foods or liquids.

Dietary Services Staffing and Training

The type and number of dietary staff is determined according to community size and appropriate regulations. The kitchen staff in active adult living communities usually includes chefs and sous chefs. In LPCs, the chefs may manage the food preparation for the skilled care and assisted living areas as well as the residential living. An RD may direct the daily activities in the kitchen for SNFs, if employed fulltime. If not, then the CMS requirements are for a CDM or health food service supervisor to manage the food preparation area (Office of the Federal Register 2006). Food vendor companies also offer the services of an RD for menu planning (Feinstein 2017). All dietary employees are trained on safe serve practices in preparing, cooking, serving, and storing food, as generally required for all food service workers in commercial or institutional food preparation settings. Strict adherence to protocols regarding handwashing and temperatures is essential to avoid contamination.

safe serve Specialized training for food service workers related to the proper handling, preparation, and storage of all food items.

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Ensuring Quality in Dining Services

The dietary administrator is a department head who develops a dietary quality assurance program to ensure that food safety protocols are met. Documentation is required for logging temperatures and is verified randomly. Good inventory control is maintained to monitor for waste and theft. Food consumption is documented by Nursing Services not only as a measure of client satisfaction but also to help the facility avoid overproduction that would create unnecessary waste and excess cost. Sanitation rounds determine whether disinfection and pest control measures are working. The Maintenance department inspects equipment for function and safety and then documents the inspection. Manufacturer’s maintenance recommendations should be followed and any necessary repairs made promptly. The administrator, working with Maintenance, ensures that all regulatory inspections are completed in a timely manner.

Activities

therapeutic recreation A systematic process that uses recreation and other activitybased interventions to address the assessed needs of individuals with illnesses or disabling conditions, as a means to psychological and physical health, recovery, and well-being.

and

Enrichment

The life enrichment or activity program in residential communities is structured around the needs, wants, and desires of its community members. In 2016, CMS incorporated the principles and concepts of person-centered care into the regulations for SNFs (CMS 2016). “Variety and respect for individual preferences are the keys to a successful recreational activities program, along with sensitivity to the emotional forces that motivate people,” wrote Pearce (2007, 102). The goal of the activity or life enrichment program is to direct the focus of the resident in positive ways, turning away from their limitations toward a more positive experience that stimulates the mind and body. Activities should help maintain or improve a person’s physical, mental, and psychosocial well-being (Pearce 2007). The regulations in skilled care communities provide guidance on maintaining a person’s highest practical level of mental and social functioning based on an individual assessment. Age and therapeutically appropriate activities (i.e., therapeutic recreation) are planned for each resident based on their hobbies and current interests (National Council for Therapeutic Recreation Certification 2022). The program should help maintain or improve a person’s physical and mental well-being. A credentialed staff member designated as the activity director handles program management in activities and life enrichment. The SNF activity director is certified either through a state program or by the National Certification Council of Activity Professionals (Office of the Federal Register 2006). Though not required in residential communities, the employment of a certified therapeutic recreational specialist is recommended (Pearce 2007). Activities should not be considered just entertainment for residents but rather an integral part of a program of health and wellness for them. Activities that feature intellectual

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stimulation, physical movement, social contact, and creative expression are needed for an effective activity program (Pearce 2007). Continual assessment should be made to ensure that the programs have meaning for the community residents. Research has shown “emerging evidence indicating three basic features as important aspects of meaningful activity. They are active participation, activity content related to the interests and past roles of the participants, and activities that meet the basic psychological needs of identity and belonging” (Genoe and Dupuis 2012, 33). Garnering outside support can enhance an activity program. Residents can feel isolated from their former life when entering a long-term care community. Involving civic groups, churches, and schools is an excellent way to provide programs that will maintain residents’ connectivity to the larger community. Volunteers can be an asset to the activity program. The activities director serves as the volunteer services coordinator. Volunteers “can run activity programs, teach courses, assist with large functions, and provide one-on-one activity support to residents in assisted living and skilled nursing communities” (Pearce 2007, 104). M e m o ry C a r e

Some residential and skilled care organizations use memory care units to provide specialized care to individuals with dementia. The units, or “neighborhoods,” range from small areas with eight to ten residents to larger areas with more than 50 residents. As a general rule, smaller is better. Higher staff-to-resident ratios are needed to keep residents with dementia engaged. Individuals with dementia experience special challenges with navigating the physical environment. Zeisel and colleagues (2003, 697) discovered a positive correlation between “environmental design and agitation, aggression, depression, social withdrawal, and psychotic symptoms of residents with Alzheimer’s disease.” These individuals may feel a greater sense of frustration and will perceive their environment as more stressful than would individuals without dementia (Van Hoof et al. 2010). A facility’s physical environment should be designed to promote the highest level of functioning possible. Zeisel and colleagues (2003) conducted a review of studies about environmental strategies to improve outcomes for residents with dementia; some of these strategies are presented in the accompanying Critical Concept sidebar “Design Strategies for Individuals with Dementia.” A wide range of designing or remodeling strategies can lead to improved quality of life for residents with dementia. For example, residents with dementia tend to have better outcomes when they live in a private room rather than a shared room (Brawley 2006). Such modifications are not limited to new or remodeled structures; they can be implemented in older buildings as well. Whenever possible, the administrator should look to employ innovations in the physical environment to improve outcomes for all residents.

memory care unit An area within a residential care setting that provides specialized care for individuals with dementia.

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CRITICAL CONCEPT Design Strategies for Individuals with Dementia

Residents with dementia present unique challenges for long-term care community ­administrators. To address the needs of this population, communities should consider the following evidence-based design strategies (Brawley 2006): • Camouflaged exits can help reduce attempts at elopement (leaving the facility without authorization); however, note that the camouflage must meet Life Safety Code standards. • Private areas have proven to reduce aggression and agitation and to improve sleep. • Public or common areas that have an inviting décor—rather than an institutional or hospital-like appearance—encourage more socializing. • Walking paths that are equipped with devices to stimulate the senses and offer activity opportunities can lift clients’ spirits and discourage desires to leave the area. Such design elements also engage the clients’ visitors and loved ones. • Therapeutic garden access has been shown to reduce elopement attempts and to improve sleep. • Communities should use thin carpet or tile with no specks, glare, or checkerboard designs.

Physical Environment

Life Safety Code A compilation of fire safety requirements for new and existing buildings to ensure safety and protection of life during fires and other emergencies.

A long-term care community administrator is responsible for all aspects of the facility’s internal and external environment. A well-organized and properly maintained environment improves the facility’s ability to serve residents, staff, and visitors. In the United States, administrators need to be aware of federal regulations from the Centers for Disease Control and Prevention (CDC) as well as the Occupational Safety and Health Administration (OSHA) that guide safety of long-term care staff and physical plant operations, especially in light of changing CMS emergency preparedness requirements during the COVID-19 pandemic (Bonvissuto 2022). Another important sets of standards administrators must be aware of is the Life Safety Code, developed by the National Fire Protection Association, that addresses issues that can cause fires or otherwise affect safety.

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Communities Management

An effective communities plan must pay ­regular attention to all aspects of the physical plant. Buildings, grounds, and equipment age at different rates, and scheduled maintenance, repairs, and replacements are necessary to avoid ­m echanical problems and facility obsolescence. Poor m ­ anagement can result in a facility ­looking tired, old, and generally uninviting (Sasse 2007). Well-maintained buildings, equipment, and grounds convey an image of a robust ­facility that is inviting to guests, residents, and staff.

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KEY POINT The Importance of Managing the Physical ­E nvironment

The importance of the physical environment, or physical plant, is sometimes overlooked by administrators, but without a properly operating plant, safe and effective care cannot be delivered. Effective administrators ensure that a plan is in place to maintain the buildings, equipment, and systems needed to provide a safe and high-quality experience to residents, staff, and visitors. These plans also help a community or congregate care service be compliant with Life Safety Code requirements. These principles apply not only to long-term

Maintenance

care communities but also to some congregate care services such as senior centers and adult day service centers. Man-

The facility’s Maintenance department bears priagement of the physical plant became extremely important mary responsibility for monitoring all aspects of during the COVID-19 pandemic, when operations needed to the plant. Regular assessments and a process for be compliant with an organization’s emergency preparedness making needed repairs are crucial and should plan as well as infection control standards as defined by the be conducted both informally and formally. An CDC and CMS. informal assessment may be conducted simply by looking for problems and potential future issues while walking around the grounds and buildings (Sasse 2007). Maintenance should also note facility odors (both organic and inorganic), floor care, and other potential safety hazards (Dolan 2009). preventive Preventive maintenance involves more than simply checking every now and then to maintenance see whether everything is in good working order. A good preventive maintenance program Routine scheduled includes scheduled inspections and such tasks as changing air conditioning and other filters, inspections and cleaning coils, tracking temperatures, testing sprinkler systems, and lubricating equipment. tasks performed on An investment in preventive maintenance can lead to returns on investment as high as 500 equipment and other percent (Micromain 2022). assets to ensure that The administrator requires Maintenance to adhere to preventive maintenance schedthey are kept in good ules developed by routinely reviewing completed tasks and expenses. Computer-based working order. systems such as TELS or Apartment Tracker are commonly used. Evidence of preventive maintenance is required to maintain warranties and track useful life of equipment. Making routine rounds with the maintenance director is a useful management practice for the administrator, assistant administrator, or administrator-in-training.

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Housekeeping

Material Safety Data Sheets Accessible to all employees, product description information sheets that describe the content and nature of all chemicals contained in a product used in the business, how to safely handle the product, and steps

Housekeeping has the critical role of maintaining a sanitary facility. In this case, the word sanitary means both clean and safe. Housekeeping must use proper methods to minimize the spread of disease and to appropriately store cleaning equipment and supplies. The products or chemicals used for cleaning and sanitizing must be approved by the Environmental Protection Agency. The facility is required by OSHA to have readily available to employees Material Safety Data Sheets for all chemicals used. Documentation of employee training on the chemicals’ use and safe handling is required. Housekeeping’s sanitation efforts also must control and combat the spread of infection. Methicillin-resistant Staphylococcus aureus (MRSA) infections and other nosocomial infections have been a growing concern in long-term care (David and Daum 2010). When a concern is identified, the housekeeping supervisor may conduct surveillance culture of surfaces to identify bacteria colony levels. During outbreaks of highly communicable viruses such as influenza or COVID-19, housekeeping routines are modified to increase the frequency of disinfecting common surfaces and handling any material considered infectious such as linens, clothes, or garbage.

to take in the event of an accident or incident involving the product.

nosocomial infection An infection that originates in the skilled care services area of a community.

governing body A group of individuals who collectively provide oversight of an organization, with ultimate legal and fiduciary responsibility for how the organization functions. Also known as the board of directors or owner.

Laundry

The Laundry department is responsible for collecting, sorting, washing, drying, and delivering all of a long-term care community’s linen, including bedding, bath towels, and residents’ clothing. Residents may give permission to launder their clothing. Though the facility assumes no liability when laundering residents’ clothes, care should be taken to label each resident’s belongings and wash clothes according to the manufacturer’s recommendations. Laundry personnel also play a key role in infection control because the nature of the work makes them likely to encounter guidelines for the handling, storage, processing, and transporting of linens to prevent the spread of infection (Marselas 2015).

A d m i n is t r at o r R ole

an d

F uncti ons

As defined in chapter 10, an administrator (also known as an executive director) is an individual in control of and responsible for an organization’s operations, and a key member of the leadership team. The administrator is appointed by the governing body, sometimes referred to as the board of directors or owner, to handle the day-to-day operations. The governing body bears the ultimate legal responsibility for the overall operation of the long-term care community, including adherence to legal and regulatory standards as well as quality standards. The board provides the parameters of authority for the administrator in writing through either a job description or a contractual agreement. The administrator is responsible for meeting all regulatory requirements under local, state, and federal laws or regulations (see accompanying Critical Concept sidebar “Complying with Regulations”).

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CRITICAL CONCEPT Complying with Regulations

The importance of complying with regulations cannot be overstated. Administrators must be well versed in all local, state, and federal regulations, even if the regulations are extensive, confusing, and ever changing. Ignorance is not a valid excuse for failing to comply. CMS is the federal regulatory body for most long-term care providers, but it relies on codes from the Americans with Disabilities Act, the CDC, OSHA, and the National Fire Protection Agency’s Life Safety Code, to name a few. Long-term care communities should have a compliance program as well as a staff person designated as a compliance officer to ensure that there is a plan for compliance with the growing number of regulatory standards for provision of long-term services and supports.

Where regulated by federal or state governments, the appointed administrator of skilled and residential communities is also known as the administrator-of-record (AOR). The AOR is the organization’s point of contract as the person appointed by the governing body to operate the facility and make daily decisions. The AOR is the corporation’s principal agent for regulatory and legal purposes. According to the US Bureau of Labor Statistics (BLS 2022), the job growth for skilled nursing and residential care administrators is robust—projected to grow 32 percent from 2020 to 2030, much faster than the average for all occupations. This projection correlates to the increased demand for LTSS resulting from the increase in persons aged 65 or older. In 2010, this age cohort accounted for about 17 percent of all adults aged 18 or older. The Congressional Budget Office (CBO 2013) has projected that by 2030, about 25 percent of adults in the United States will be aged 65 or older. In the United States, there are an estimated 45,000 licensed nursing home administrators, with 25,000 of them serving as the AOR, as reported by the National Association of Long Term Care Administrator Boards (NAB 2019). To be a nursing home administrator, a license is required under federal regulations in all 50 states and the District of Columbia. Each state establishes the minimum requirements prior to examination. All candidates for licensing must pass a two-part national exam, and some are also required by their state to pass a state exam. The NAB administers the national exam, which measures minimum competency in core knowledge skills found in any area of senior living and health services. Along with the core knowledge examination, candidates for licensing must complete an exam on the specific service lines found in the area of skilled nursing communities. After an administrator is licensed, states set continuing education (CE) requirements for the administrator to enhance their skills and knowledge of SNF operations. The CE credit

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reciprocity The mutual recognition among states that acknowledges a license granted by another state and extends privileges under that license without further testing except on statespecific rules.

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hours must be met in order to retain the license. This process is similar to that required by all licensed professionals, including nurses, physicians, and therapists (NAB 2019). Although the nursing home administrator license is issued by one state, the administrator has flexibility to work in another state under reciprocity rules. An administrator can practice in another state by applying for reciprocity without having to complete the national exam again. States may require a state exam, however. The administrator can maintain their license in multiple states by meeting the CE requirements—which many administrators choose to do because it is common practice for multifacility chain operations to move administrators among states. The long-term care administrator is a manager, a leader, and a problem solver. The administrator will not have all the answers to the problems; however, with experience and self-assessment, they will know when and where to seek assistance. The administrator’s primary job is to oversee and coordinate the services for the facility. In short, the administrator is the leader of their management team. It is their job to create the synergy for success. Chief among the administrator’s roles as leader is communicating with the team and with the clients, thus effective communication skills are essential. In addition to individual meetings with managers, this communication may be accomplished through such methods as team meetings (some using huddles), town hall meetings, and resident and family council meetings. The governing body may also have organized meetings that require the administrator’s attendance. A d m i n i s t r at i v e I n t e r a c t i o n s

and

C oo r d i n at i o n

Effective administrators need sharply honed communication skills to interact effectively with multiple groups with varied backgrounds and interests, as well as through communication channels such as social media. An administrator must be able to communicate as effectively with the housekeeping staff as with the physicians. The workforce composition in the organization includes people of many cultural and ethnic backgrounds, along with divergent skills and educational levels (as discussed in chapter 12). Careful and consistent messaging across multiple platforms on social media is especially important. The organization should also have clear written expectations for staff regarding the use of social media. Digital communications should be well thought out and not random or whimsical—and align with preferences and interests of targeted groups (staff, clients, community members). Team Meetings

An administrator’s primary mode of organizing and directing is through team meetings. There are a number of routine meetings that the administrator uses to collect and disseminate information and to formulate the team’s direction. Chief among these are the

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morning and afternoon huddle meetings. Other customary meetings would include staff and department meetings, in-service education, and town hall meetings.

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huddle A short, stand-up meeting of

Morning and Afternoon Huddles

The administrator routinely convenes huddles usually twice daily. The morning huddle is the more important because it helps update and guide the team at the beginning of their workday. Intended to be a brief meeting lasting about 10 to 15 minutes, in the complex world of skilled care the meetings may involve more time. Size of the facility influences the amount of time needed. The morning meeting facilitates interdepartmental communication and helps the administrator keep tabs on the team. The administrator seeks brief input from each manager and key staff person in attendance. This interactive meeting helps communication among the team. They briefly review any significant events that may have occurred overnight, report operational issues (staffing, equipment, complaints), the current day’s activities (groups coming into the facility, resident field trips out) and review selected facility data (occupancy, deaths, discharges). As one nursing home administrator (Upshaw 2018) describes it:

administration and department heads— 15–30 minutes in length—that typically is set up at the start of the workday to aid in communication and care of clients or residents.

We reflect on the previous day and establish new goals and plans for the current day. All members of my core team share information and the status of projects. This makes sure we’re all on the same page and provide the best continuity of care in all departments.

Afternoon huddles may occur less frequently, being dependent on the type of facility, admission or discharge activity, or situations that require close monitoring or rapid response, such as COVID-19 or state surveys. Upshaw (2018) relates his use of the afternoon huddle: I receive updates on all confirmed admissions for the day. We must confirm we have all needed equipment and materials to care for a new resident or patient. Towards the end of the day, I try to prepare for the next day by gathering materials to present to the team at tomorrow morning’s meeting. Though the building has federal and state guidelines, I must also stay in compliance with our corporate guidelines and follow all recommendations.

The facility records the information and topics covered in the huddles, and copies are maintained on file. Exhibit 11.4 shows a sample morning huddle report. Some corporations require that the form be faxed to a regional or corporate office. Other Huddles

Communities use huddles in other formats as well. For example, the administrator may call a postfall huddle after a resident fall and initiate a performance improvement plan.

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EXHIBIT 11.4 Sample Morning Huddle Report

TOTAL CENSUS:_________________ SKILLED:________ NF:________ AL:________ ACTIVITIES:______________________________ LUNCH:________________________________ ADMISSIONS YESTERDAY

DISCHARGES YESTERDAY

TRANSPORTS

ADMITS THIS WEEK

DISCHARGES THIS WEEK

SAFETY CONCERNS

NEXT GENERAL ORIENTATION:______________ NEXT QAPI DATE:______________

STAFFING CONCERNS STUDOR ROUNDING

PAYER SOURCE MEETINGS OF THE CHANGES/MOVEMENT DAY CARDS

NEW HOSPICE

PREVIOUS DAY F/U ITEMS NEW HIRES

Any Air Mattress or Special Equipment that Company needs to be Informed of payer source change?

Reminders: Has anyone converted from SNF to NF? Add Monthly Summary and Quarterly Evaluations to their TAR, Update Care Plans, Notify MDS, Restorative Plan Added, are all needs being met? Thank You Card to Staff:____________________________________________________________________________________

© Patrick Nicovich

town hall meeting A meeting typically hosted by senior management of a longterm care community to

The huddle team collects facts, analyzes possible causes, and discusses possible interventions. Departments or units may use a regular huddle at shift change for a smooth transition between the shifts and to manage quality and patient safety. As summarized by the Institute for Healthcare Improvement (IHI 2022), “Huddles enable teams to look back to review performance and to look ahead to flag concerns proactively.” The success of huddles is dependent on training and empowering the staff. Empowered staff can quickly and, in many cases, easily resolve minor problems in the early stages. Left unaddressed, concerns can lead to resident and staff dissatisfaction, complaints, and regulatory issues.

foster communication with stakeholders (employees, residents, families) by communicating information to allow the audience to have input to influence the organization’s decisions.

Town Hall Meeting

A town hall meeting can be an effective communication tool in building dialogue between senior management and the stakeholders (employees, residents, or families). Town halls provide an opportunity for the audience to voice concerns and ask questions. To be effective, the administrator would regularly schedule town hall meetings, invite input to an agenda, and accept questions before and during the meeting. Most important, the administrator should summarize information discussed in the meeting and disseminate it to those unable to attend.

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Resident and Family Councils

Management of resident and family communication is fundamental to a long-term care community’s success. Encounters with these two groups should be frequent and engaging. Building rapport increases the likelihood of residents’ and families’ willingness to work cooperatively with the facility team to achieve the overarching goals of quality of care and quality of life. Knowing residents and families by name along with knowing their “story” helps build that rapport. Among the ways an administrator communicates to residents and families include monthly newsletters, bill inserts, phone call updates, digital messaging on social media, and the community’s web page. A mechanism that can be very useful to the administrator is the resident council or the family council. Some communities have both. Though not required by regulation, the administrator should foster and support an open dialogue with the councils. When either council is present in a skilled care facility, space, privacy, and administrative support is required (Office of the Federal Register 2006). The councils serve an advisory role to management. By definition, they should serve the interests of all residents in the community. The councils are self-governing and elect their own leadership. The meetings, agenda, and programs are determined by the respective council. The administrator designates a liaison to the groups who assists in organizing space, speakers, and other necessary support. Either the activities director or the qualified social worker serves as the liaison.

resident council A self-organized advocacy group of residents within longterm care communities designed to represent the interest of community residents, promote highquality services, and communicate matters of concern and issues

Managing Financial Resources

The importance of managing the finances of a business is second only to building relationships with stakeholders. Good businesses can suffer real harm by failing to effectively manage revenue and control expenses. The administrator is responsible for the financial health of their community or service line. Monitoring of daily reports and approval of purchases are the chief ways the administrator can determine whether the financial resources are being used effectively. Finances are discussed in detail in chapter 15.

to management for resolution.

family council A self-organized advocacy group of family members, partners, or friends of residents within residential and skilled

Managing Quality Improvement

The administrator is responsible for the implementation of an effective quality improvement program as required by the organization’s governing body and by federal regulations for SNFs and LPCs. Quality management programs may also be mandated by state regulations for ALFs. Measuring quality of care and quality of life forms the basis for determining how well the goals of care and services are met. The administrator manages the quality processes through an interprofessional quality management and performance improvement committee. Quality is the responsibility of all employees, and effective training and monitoring processes are ways to improve the workers’ understanding of quality. Quality and safety are discussed in greater detail in chapter 16.

care communities designed to represent the interests of residents, promote high-quality services, and communicate matters of concern and issues to management for resolution.

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Planned Rounding to Improve Quality

rounding The process of interacting with residents and staff by the administrator or interdisciplinary team to identify and quickly resolve issues of care and service and to verify compliance with standards of care.

Maintenance of standards—governmental and corporate—is a critical management function in the long-term care arena. An administrator employs a variety of methods to ensure compliance with corporate expectations and the federal and state regulations, which are the minimum standards. Chief among these methods is a practice known as rounding, the process whereby individuals physically tour the facility (“make the rounds”) to validate compliance with expected standards. The administrator implements an organized plan for rounding among senior leadership and key staff members. Timing of rounds can be random, with a department focus (Dietary, Activities, Nursing), a function focus (dining, grooming), or a special focus (infection control, safety, handwashing, positioning). Varied times for rounds, including off-hour shifts, are a best practice. Using interdisciplinary teams to round creates an understanding of the challenges faced by each department and builds interdepartmental cooperation. Including frontline staff trained in rounding bridges the gap between levels of supervision. Observations by teams on rounds should be documented and tracked. Recurring deficient practices are opportunities for management interventions for training with employees. Noncompliance with standards reflects a failure of the facility processes in training and communicating expectations and should not be a punitive process. Random Rounding—Management by Walking Around

management by walking around (MBWA) Behaviors and practices characterized by managers interacting with workers in an unstructured manner to promote coordination and follow-up of services.

In addition, the administrator should practice a form of random rounding known as management by walking around (MBWA). Visible improvement in their operation is seen by an administrator reserving time to leave the office and interact with individual workers throughout the community. As pointed out by Upshaw (2018), “I intentionally eat in the dining room with my staff to fellowship with them. The workplace is where we spend most of our time, and I want to create a family like atmosphere.” It is important to include evening and night shift visits as well. The concept of MBWA has been around since the late 1980s and was popularized further in the management writings of Tom Peters and Robert Waterman. Peters called MBWA the “technology of the obvious”; as leaders and managers wander about, he said that at least three things should be going on (Peters and Waterman 2008): ◆◆ They should be listening to what people are saying. ◆◆ They should be using the opportunity to transmit the company’s values face to face. ◆◆ They should be prepared and able to give people on-the-spot help. MBWA must be accomplished in an open and transparent manner and be tied to quality improvement activities.

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A L oo k A h e a d The trends in long-term care in the years ahead will reflect the needs of an older, more diverse population, a growing number of adults living with disabilities, and the financial demands on the healthcare delivery system in general. Aging services will continue to be impacted by COVID-19 for some time to come. The current models in housing are evolving to include wellness as well as safety protocols, and there will be continued interest in home and community-based services. The current challenges for financing care and rapidly advancing technology changes in everyday life will be a constant for the foreseeable future. The full impact of the COVID-19 pandemic on LTSS is yet to be determined. As of January 2022, it has been estimated that approximately 200,000 long-term care facility residents and staff have died from COVID-19, making up 23 percent of all COVID deaths in the United States (Chidambaram 2022). However, a recent report by the National Opinion Research Center at the University of Chicago and the National Investment Center showed that more than half of the senior living properties studied in five states experienced no COVID-19 related deaths in 2020, and deaths increased in communities that had residents with complex health and caregiving needs (Sudo 2021). All residential care and long-term care organizations have modified their business operations to meet CDC recommendations. This has resulted in increases not only in financial cost but also in social isolation for residents. Sheltering in place within residential and long-term care communities has increased psychosocial issues among both staff and residents. An appropriate and satisfying solution to residents’ need for social interaction is needed. Implementation of CDC guidelines—testing of residents and employees, social distancing, frequent handwashing, increased disinfecting, facility lockdown (no visitors), and increased use of personal protective equipment—will continue for some time to come. The financial cost for one-time testing of all long-term care community residents and staff is estimated at $672 million (Bonvissuto 2020a). Historically, the largest payer of care in long-term care communities is Medicaid, which does not fully cover the costs incurred. The COVID-19–associated costs have placed an additional strain on these organizations’ already tight budgets. Approximately 25 states have responded to the LTSS budget crisis by leveraging Medicaid funds to increase per diem rate reimbursements for specific purposes (Flinn 2020). As the current population of older adults continues to expand, the demands for housing and care options will continue. Current models of care and services may look vastly different in a post-COVID world. The expectations for new aging services cohorts will force change to some other offerings than currently found, especially for those in the “forgotten middle”: people of modest financial means who cannot afford assisted living and healthcare needs (Pearson et al. 2019). The skilled care model in use since the mid-twentieth century has lost some relevancy with the users expected over the upcoming 15 to 20 years. For both

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residential and skilled care, older adults want to be cared for at home and not move. HCBS will continue to expand. Providers will explore other options to support the expectations of at-home care and services, not just for the short term but also for the long term. Models under CMS’s Acute Hospital Care at Home waiver may fill the gap in expectations and reality for both personal and healthcare services, ensuring effective care transitions and the safety of all consumers (Cheney 2021). New sets of operational protocols and management skills will be needed to incorporate these innovations into long-term care service delivery operations. Supporting the care needs of older adults and young persons with disability at home is a view of the future “where nursing homes could serve as community hubs for aging, a place where members of the community could obtain information on services available as well as delivery of those services” (Dupuis-Blanchard and Gould 2018, 447). The use of technology in all areas of society will continue. (The rapid changes are discussed fully in chapter 5.) We will continue to find new developments that will enable older adults and people living with disabilities to remain in their current location. Residents in residential and skilled care communities will benefit from advances in assistive devices, monitoring tools, and electronic means of communication. New protocols for management of these services as part of the HCBS spectrum will need to be developed, and administrator training in these areas will continue to grow in importance.

For Discussion 1. Explain the differences between assisted living communities and skilled nursing communities. 2. How do marketing and sales differ between SNFs and LPCs? 3. Compare and contrast social services and activities in SNFs to what an older adult may experience in residential care communities. Explain why. 4. Describe dining services found in residential care communities. Explain the basis for altering the dining experience in SNFs beyond the CMS requirements. 5. Discuss the administrator or executive director’s role in plant maintenance. 6. Research the development and use of huddles in health care. Illustrate how the administrator uses huddles to both manage the operation and meet quality standards. 7. Identify and describe at least three ways the administrator can bolster communications within the facility. 8. What type of personal skills are needed for an administrator to effectively coordinate the service delivered by the various departments? 9. Describe the Business Office functions and explain the importance of concierge services. 10. Discuss the role of teams in operating residential care and long-term care communities.

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C a s e S t u d y : H o w M a n a g e m e n t S t y l e A f f e c t s O p e r at i o n s The Applecross Corporation owns 14 properties that offer residential and skilled care services across one midwestern state. William Angel, MHSA, LNHA, recently joined the corporation as vice president of Operations. His analysis of company data revealed that two communities in Riverview, a community of 50,000 in the northwest corner of the state, had markedly different metrics of operations. Glendale Rehabilitation’s statistics overall were reflective of the competitor’s communities in the area; those of College Heights Retirement Community were not. Facility Metrics. Glendale Rehab is a 195-bed facility, 35 beds of which are part of a skilled nursing unit. On campus is a 42-unit living facility, Glendale Manor. Average occupancy for Glendale Rehab is 97 percent. The skilled nursing unit occupancy maintains an average occupancy of 99.2 percent. Average length of stay (ALOS) on the skilled unit is 18 days. Payer mix for the skilled unit consists of Medicare (85 percent), managed care (12 percent), and others (3 percent), which include worker’s compensation insurance and private pay. The long-term care unit averages 95 percent occupancy with an ALOS of 430 days. The payer mix of the long-term care unit is 71 percent Medicaid, 18 percent private pay, and 11 percent long-term care insurance. Glendale Manor ALF has 40 of the 42 units occupied, on average. College Heights Retirement Community, Glendale’s sister facility across town, is older than Glendale, having opened ten years earlier. It has a 185-bed facility, 30 beds of which are part of a skilled nursing unit. On the campus is a 20-unit ALF, the Heights. Average occupancy for College Heights Retirement Community is 86.25 percent. The skilled unit occupancy runs 91.2 percent on average. ALOS on the skilled unit is 23 days. Payer mix for the skilled unit consists of Medicare (78 percent), Managed Care (8 percent), and others (14 percent), including worker’s compensation and other sources. The long-term care unit averages 84 percent occupancy, with an ALOS of 232 days. The payer mix is 89 percent Medicaid, 8 percent private pay, and 3 percent indigent care. The Heights ALF has 12 of the 20 units occupied, on average. Annual staff turnover at Glendale is 11.4 percent, considerably lower than the marketplace. However, at College Heights, the turnover is 45 percent. Based on the state surveys and performance on quality measures, Glendale was rated overall five stars (the top rating); College Heights, two stars. In the past three years, Glendale had one deficiency-free survey, no substandard quality of care issues, and $0 paid in civil money penalties (CMPs). College Heights, on the other hand, incurred $38,500 in CMPs and experienced two surveys with Immediate Jeopardy (IJ) findings. Issues with substandard care were found each year. Both IJs were a result of resident complaints made during the annual recertification survey. Facility Management Leaders. Bryana Anglada, LNHA, is the 40-year old executive director at Glendale Rehabilitation. She is from the local area and is a graduate of the accredited Business School at Riverview University, a four-year state university of 10,000

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students. The administrator of College Heights is Frank Lesark, MBA, LNHA. He relocated to the area from the East Coast. Both of his degrees in Business Management are from Jasen Mason University, a private university of 25,000 students. Both Bryana and Frank have been LNHAs for approximately 12 years. Bryana has been with Glendale Rehabilitation for eight years; Frank has three years’ experience with College Heights, which is the longest tenure he has had in his career at any one facility. When Vice President Angel visited Riverview, he allowed time in his schedule to shadow each administrator in addition to spending time with department managers and reviewing facility operating data with each administrator. He informed both administrators of the planned visit on the upcoming Tuesday and Wednesday and his need to use space in their office during the visit. College Heights Visit. William arrived at 7:30 a.m. Tuesday for his scheduled visit and had to call someone from Maintenance to open the administrator’s office. He then took a leisurely walking tour of the building on his own, introducing himself to staff and residents. On Unit 1 the staff was congregated at the desk while food carts stood in the hall and call lights were ringing. No one seemed to notice William. He interrupted one conversation and asked if the charge nurse was available. A person in street clothes with no name badge sitting at the desk eating breakfast raised a hand. William asked the nurse about the call lights. “We’ll get to them in a minute,” the nurse replied. Returning to the office at 8:30 a.m., he was surprised that the administrator had not yet arrived. At approximately 8:50 a.m., Frank appeared on the scene with his fast food breakfast, chatting about oversleeping and traffic. When it was 9:10 a.m., William inquired about the morning huddle and was met with a puzzled look from the administrator. William paged overhead for the staff to come to the administrator’s office. By 9:20 a.m., most of the managers had arrived. The administrator led a rambling discussion about what each department was focused on that week, with little input from the managers. William inquired at the end of the meeting about occupancy, potential admissions, marketing, and other topics. The staff had difficulty agreeing on the actual data, and their answers were, in some cases, contradictory. William spent the rest of the day with the administrator, encouraging Frank to follow his normal routine. The time was mostly spent in his office, where Frank made phone calls, paged staff for information, or referred sponsors with complaints or concerns to department managers. There were numerous interruptions from staff about basic and routine operations. Periodically, William would “stretch his legs” and wander around in the facility. William again took notice of the disorderly appearance of the facility and a number of call lights unanswered when he toured Unit 2. After responding to one resident’s call light, Frank stepped in the hall to find assistance for the resident. A passing CNA he stopped responded, “That’s not my patient,” and kept walking. In the Dietary and Environmental Services Department, William was not able to locate the manager or anyone who knew where he could find them. Seeing that it was now

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2:45 p.m., William returned to the administrator’s office and found it empty. He asked the receptionist of Frank’s whereabouts and was told he had left the building for an appointment. The receptionist did not know the nature of the appointment or when Frank might be back. At 5:30 p.m., William packed up his laptop, making sure that the lock clicked as he shut the office door, and returned to his hotel. Glendale Rehabilitation Visit. The following day at Glendale Rehabilitation, William met Bryana in the parking lot as she was entering the building at 7:15 a.m. They made a walk through the facility, touching base with employees in each department and each nursing unit. They walked across the campus to the assisted living building, where they had breakfast with the residents, which is Bryana’s routine every Wednesday. At 9:00 a.m., they met the managers and key team members who had assembled in the conference room for the morning huddle. Displayed on the wall was a whiteboard that Bryana maintains to track the essential operating data and major projects the team has under way. The Business Office manager had updated occupancy and discharge information based on the midnight census. Pending admission information was already updated by the admissions coordinator. Using the board data as reference, Bryana’s staff reported briefly on that day’s occupancy, discharges, and admissions. The admissions coordinator provided an update on potential admissions, giving staff essential, basic information and expected date of admission for each new resident. Other projects were updated by the team lead (or coleaders) who gave brief updates and answered questions. During the presentations, Bryana took notes and summarized the reports. She provided each team feedback, guidance, and directions. The morning huddle ended at 9:25 a.m., and Bryana then met with the director of nursing and the dietary manager to discuss an ongoing issue with correct diets. After working out a temporary solution, the meeting continued with the DON discussing several pertinent resident complaint issues. Bryana scheduled a family conference in one case and suggested that the resident assessment team review the other two situations. The DON was to have the team’s recommendations to Bryana by morning huddle the next day. At lunchtime, Bryana took William to the break room to eat lunch with employees after picking up food from the cafeteria. The menu offered for employees was the same as for residents. From the conversation, it was evident that on Wednesdays Bryana ate lunch there. Employees were relaxed around both Bryana and William; three were former employees at College Heights and expressed appreciation for the opportunity to transfer. After lunch, William followed Bryana through the facility, where she introduced William to a number of residents who obviously were well known to Bryana. As they made their way back to the family conference scheduled that morning, Bryana noted several areas in need of attention from Environmental Services (ES). She called an ES aide by name and, after introducing William, asked if the aide would please address her concern. After the family meeting, Bryana led a review and update on the budget and variance reports and discussed pending capital projects. The next hour was spent chatting

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about Bryana’s vision to expand Glendale by offering new services for unmet needs in the community such as home support to elders and adult day care. She spoke passionately about following patients discharged from Glendale to help ensure their success at home. Her vision piqued William’s interest, and he invited Bryana to discuss it further over dinner. William called Frank’s cell phone and left a voice mail message about dinner. Bryana called him later, too. Bryana and William ate locally caught catfish at a favorite spot overlooking the river. At the end of the evening, William saw that Bryana could make good arguments about expansion plans to the governing body at its meeting coming up in two months. Neither William nor Bryana heard from Frank that evening or the next day.

Case Study Questions 1. Compare and contrast the management style of Bryana and Frank. Why is the management style of an administrator important? 2. Discuss the management functions evident in the case study. Which administrator seems to be more engaged with the management team of the community? How was such engagement demonstrated? Why is this engagement important? 3. If you were William, what steps would you take from here about the operations of these two communities?

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Regan, T. 2018. “Dished: Senior Living Providers Feed a Growing Appetite for Farm-Fresh Fare.” Senior Housing News, August 16. Ruscin, J. M., and S. A. Linnebur. 2021. “Overview of Drug Therapy in Older Adults.” Merck Manual Professional Version. Modified July. www.merckmanuals.com/professional/ geriatrics/drug-therapy-in-older-adults/overview-of-drug-therapy-in-older-adults. Ryskina, K. L., D. Polsky, and R. M. Werner. 2017. “Physicians and Advanced Practitioners Specializing in Nursing Home Care, 2012–2015.” Journal of the American Medical Association 318 (20): 2040–42. Sasse, R. 2007. “Facility Condition Assessment in Nursing Homes.” Nursing Homes 56 (6): 22–28. Sudo, C. 2021. “More Than 50% of Senior Living Communities Experienced No COVID Covid-19 Deaths in 2020, NORC Finds.” Senior Housing News. Published June 3. https:// seniorhousingnews.com/2021/06/03/more-than-50-of-senior-living-communities-experienced-no-covid-19-deaths-in-2020-norc-finds/. Tjai, J., A. Bonner, B. A. Briesacher, S. McGee, E. Terrill, and K. Miller. 2009. “Medication Discrepancies upon Hospital to Skilled Nursing Facility Transitions.” Journal of General Internal Medicine 24 (5): 630–35. Trinkoff, A. M., C. L. Storr, N. B. Lerner, B. K. Yang, and K. Han. 2016. “CNA Training Requirements and Resident Care Outcomes in Nursing Homes.” Gerontologist, 57 (3): 501–8. https://doi.org/10.1093/geront/gnw049. Upshaw, B. T. 2018. “Inspired to Help Others: Celebrating Long-Term Care Administrator’s Week.” Alabama Nursing Home Administrators Association. Published March 12. https:// anha.org/inspired-to-help-others-celebrating-long-term-care-administrators-week/. US Bureau of Labor Statistics (BLS). 2022. “Medical and Health Services Managers.” Occupational Outlook Handbook. Modified April 18. www.bls.gov/ooh/management/medicaland-health-services-managers.htm.

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Van Hoof, J., H. S. Kort, H. van Waarde, and M. M. Blom. 2010. “Environmental Interventions and the Design of Homes for Older Adults with Dementia: An Overview.” American Journal of Alzheimer’s Disease and Other Dementias 25 (3): 202–32. Zeisel, J., N. Silverstein, J. Hyde, S. Levkoff, M. P. Lawton, and W. Holmes. 2003. “Environmental Correlates to Behavioral Health Outcomes in Alzheimer’s Special Care Units.” Gerontologist 43 (5): 697–711.

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CHAPTER 12

THE LONG-TERM CARE WORKFORCE Carol Molinari, PhD, Teta Barry, PhD, Mary Helen McSweeney-Feld, PhD

Learning Objectives After studying this chapter, you should be able to ➤➤ provide a strategic overview of human resources and its essential functions; ➤➤ identify types of long-term care workers, including their job functions; ➤➤ discuss supply and demand for the long-term care workforce; ➤➤ understand recruitment and retention issues for long-term care workers; and ➤➤ discuss future trends affecting the long-term care workforce.

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The lifeblood of any healthcare organization is its human resources. These are the clinical, administrative, and support staff who deliver services and supports in long-term care (LTC) organizations. Nowhere are practices related to human resources more critical than in the provision of long-term care services and supports (LTSS), where clients and residents rely on workers to provide some of the most intimate care in healthcare. Consequently, attracting and retaining those people becomes an essential component of that business. The term long-term care workforce refers to a broad spectrum of workers who range from direct care to managing the business operations related to providing services. To be a high-performing organization, a long-term care organization must become known for the quality of the services it provides, and that quality is related to its ability to attract and retain a highly trained workforce. This chapter provides an overview of the essential functions of human resources management in long-term care settings, as well as an overview of the key long-term care workers who provide these services and supports. Specifically, the chapter looks at the categories or types of LTC workers and their characteristics; the growth in demand for aides and direct care workers; the two major categories of managing human resources involve obtaining and retaining staff together with strategies to meet current and future long-term care workforce needs.

C o m p o s it i o n

of the

333

human resources Practices and policies that are necessary to keep the people side of an organization running.

long-term care workforce The broad spectrum of workers who provide long-term care services and supports, from direct care to administration.

L o n g -T erm C are W orkfor ce

The long-term care industry is typically categorized according to where care is provided—for example, in residential care or home and community-based settings. Except for home care that is primarily delivered in a client’s home, skilled nursing and assisted living provide long-term care services in long-term care communities. Most “formal” workers who receive payment for their work providing care services are employed in residential care settings. These “formal” workers are often contrasted to the ”informal” workforce of family and friends who often voluntarily serve as caregivers to older adults (usually without pay unless they qualify for assistance such as the Cash and Counseling program discussed in chapter 5; see also Sollito 2022). A majority of the 4.5 million long-term care workers in the United States work in residential care settings such as skilled nursing (42 percent) or assisted living (25 percent), as reported by the Kaiser Family Foundation (True et al. 2020). The level of care provided by long-term care workers varies by setting, with skilled nursing care provided in skilled nursing facilities (SNFs, also known as nursing homes) and personal care services provided in assisted living facilities (ALFs) and smaller retirement homes. Home health agencies provide post-acute or rehabilitative care and personal care to consumers who need some help but typically not 24/7 monitoring. In 2018, 33 percent of long-term care workers were employed by home health agencies (True et al. 2020).

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Jobs

or

O cc u pat i o n s

in

Ltss

Within each setting, there are key jobs or occupations that are based on the level of consumer or resident contact and type of work. Healthcare workers delivering LTSS can be classified as (1) nurse aides and personal care workers; (2) direct contact workers, including nonclinical support staff who do not provide clinical care but interact with patients or residents frequently (e.g., housekeeping, food service); (3) clinicians; (4) social and behavioral services workers, and (5) administrative professionals (True et al. 2020) The types of staffing vary according to the level of services delivered in each setting. For example, independent living communities may employ a small number of administrative professionals and support workers. A provider of home and community-based services (HCBS) may have administrative staff working in an office as well as clinicians and aides providing care in the homes of their clients. A nursing home tends to be more structured and typically has all five categories of long-term care professionals. Direct Care Workers

These workers comprise the largest group of workers in the long-term care industry (Molinari and Zhang 2015; National Center for Health Workforce Analysis, 2018). This category of workers includes nursing assistants, home health aides, and personal care aides who help individuals with chronic conditions by assisting them with activities of daily living (ADLs) such as bathing and dressing or instrumental activities of daily living (IADLs) such as housekeeping and shopping. While most long-term care services depend on these nonmedical caregivers to provide most of the direct care, the amount of education and training required for these positions is minimal and varies with the setting. For example, home health and personal care aides working in non–Medicare and Medicaid certified organizations typically need a high school diploma or equivalent. Aides working in settings certified by Medicare and Medicaid must complete at least 75 hours of training and pass a competency exam, as required by the Centers for Medicare and Medicaid Services (CMS 2020a). These state-certified nurse aides and home health aides tend to earn higher wages compared with noncertified workers, as reported by the US Bureau of Labor Statistics (BLS 2022a). Direct care workers are supervised by licensed clinicians such as registered nurses and licensed practical nurses. Direct Contact Support Workers

These workers have direct contact with residents but are not clinical staff. This category includes housekeeping, laundry, and food service workers These workers are integral components of the long-term care continuum as they provide essential services that help ensure the well-being of the residents. In certain situations, a direct contact support worker may assist a direct care worker if necessary, and some LTC organizations “cross train” both

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job categories as a way to empower staff and mitigate staffing issues (Berridge, Tyler, and Miller 2018). Growing demand and turnover of direct care workers, especially aides, is problematic in many parts of the long-term care industry. According to the Paraprofessional Health Institute (PHI 2021b), more than 1.3 million new direct care worker jobs need to be added by 2028 to meet the demand. Meeting this need will be challenging because of the marginalization of this workforce with historically low wages and benefits, along with extensive physical and emotional demands. In 2020, the COVID-19 pandemic put a spotlight on the entire healthcare workforce, including the direct care workforce in long-term care. The pandemic strained an already struggling industry, wherein LTC staff often lacked sufficient resources to provide quality care (McGarry, Grabowski, and Barnett 2020). The ability to recruit and retain direct care workers was at an unprecedented high, leading CMS to temporarily waive the training requirements for certified nursing assistants in SNFs (CMS 2020b). The demand for frontline workers during this time also prompted many LTC organizations to increase hourly wages, offer “hazard” pay to incentivize workers, or both (Musumeci, Childress, and Harris, 2022). Although the training waiver has been lifted and wages have leveled off, positive by-products of the pandemic include greater appreciation of these “essential” workers and states providing pathways for temporary nurse aides to become certified (American Health Care Association [AHCA] / National Center for Assisted Living [NCAL] 2022). Clinicians

These health professionals and midlevel providers may provide or supervise direct patient care. Nurses, physicians, and other nonphysician clinicians compose the bulk of this group of workers. Nurses: The two main categories of nurses in LTC settings are registered nurses (RNs) and licensed practical nurses (LPNs) or licensed vocational nurses (LVNs). All nurses must be licensed by the state in which they practice. Federal regulations require the delivery of skilled nursing services by RNs to be under the supervision of a director of nursing for 8 hours a day, 7 days a week (Code of Federal Regulations 2016b). Minimum staffing requirements for nurses may also be required by state law. Nurses may also oversee assessments for ALF residents as well as home care and hospice clients, depending on state requirements. Many nurses in long-term care settings are LPNs or LVNs who are graduates of one-year practical nursing programs offered at community colleges or vocational technical schools. LPNs and LVNs provide treatments and administer medications. LPNs may also work as charge nurses and team leaders and supervise the work of direct care aides. Chapter 11 provides additional detail on the roles of nurses in the Nursing department.

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Physicians: An SNF is required to have a physician as a medical director who implements resident care policies and coordinates medical care for residents (Code of Federal Regulations 2016c). States may have additional requirements. For example, new legislation in California requires medical directors in SNFs to meet eligibility under a set of education and experience requirements (California Legislative Information 2021). Some nursing homes may also contract with other physicians to provide specialty care such as behavioral health services, dialysis, or pulmonology. In settings such as ALFs and home care, physicians are not required to provide care or supervision. Nonphysician clinicians: Nonphysician practitioners are clinical professionals who practice in many of the same areas that physicians practice but who do not have an MD (Doctor of Medicine) or DO (Doctor of Osteopathy) degree. The two main types who practice in long-term settings are nurse practitioners (NPs) and physician assistants (PAs), as introduced in chapter 11. NPs and PAs are often referred to as physician extenders because they enable physicians to see more patients. NPs and PAs practice under the supervision of a facility’s medical director but work in collaboration with the attending physician and are not employees of the facility. Both NPs and PAs can prescribe drugs when authorized to do so under state law. Their training makes them an important part of long-term care service delivery. NPs are advanced practice nurses who provide medical and mental health services similar to those of primary care physicians. They can diagnose and treat a wide range of health problems. NPs may be used to follow up on the medical care of their patients. NPs receive advanced graduate-level education and clinical training beyond what is required for RN preparation. Most have master’s degrees; some specialize in geriatrics. PAs are increasingly employed to provide long-term care services under the direction of a physician such as the medical director of an SNF. The scope of practice of PAs includes performing physical examinations, diagnosing and treating illnesses, ordering and interpreting laboratory tests, and making rounds at long-term care facilities (American Academy of Physician Assistants 2022). Therapists: Therapists may include professionals trained in physical therapy, occupational therapy, and speech-language pathology. Physical therapists provide patients with care related to movement and any related dysfunctions. Occupational therapists are clinical professionals who help patients perform ADLs. Speech-language pathologists assess, diagnose, and treat speech, language, social communication, cognitive communication, and swallowing disorders; they may also provide therapy to individuals with dementia. All therapists complete graduate training and must pass state licensing exams to practice (Shi and Singh 2019). Graduate-level training is the usual minimum requirement for practicing in these fields (Shi and Singh 2022).

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Social and Behavioral Services Workers

Social support professionals include social workers and activity professionals. A social worker is required in a nursing home with more than 120 beds and helps with assessment of a resident’s cognitive, behavioral, and emotional status, counseling, and conflict resolution (Code of Federal Regulations 2022). They help people cope with various types of issues in their everyday lives. They also have community resource expertise that is often called upon by home care teams to obtain professional services available in the community. Social workers are not a required part of staffing for ALFs, but they may be present in agencies that provide assistance for people living with disabilities. Activity professionals are long-term care workers who provide a variety of recreational programs for groups and individuals to improve and maintain the residents’ physical, mental, and emotional well-being. Programs include arts and crafts, games, music, movies, dance and movement, social celebrations, and community outings (Molinari and Zhang 2015). Activity staff can be licensed or certified as a therapeutic recreation specialist or activities professional, and some settings may require this certification to direct an activities program—as at an SNF—or state law may require such licensure, as for ALFs and adult day services programs (Code of Federal Regulations 2016d). Care management refers to social service coordination within a community-based delivery of services. The care manager is an advocate who assesses needs and coordinates referrals to support direct services and assistance (Werdegar, Flores, and Caldwell 2014). Care management is carried out in home and community-based settings by workers from several disciplines, mostly nursing and social services. Care managers provide service across specialties that include acute, palliative, mental health, and long-term care across home, community, and institutional settings (Werdegar, Flores, and Caldwell 2014). Typically, care management is not a licensed or regulated profession; however, licensed healthcare professionals—that is, nurses and clinical social workers—can practice care management. Geriatric care management is an emerging profession to manage the needs of the growing numbers of older adults and to minimize costly fragmentation of care associated with the growth in the senior population (Cress 2015). Administrative Professionals

These are typically administrators and administrative workers who have less regular direct care with patients. Administrators oversee operations to safeguard efficiency and quality of services provided. In skilled nursing settings, a long-term care administrator is required to be licensed, while in ALFs or adult day services, licensure or certification of administrators depends on state requirements (Code of Federal Regulations 2019). Support staff assist with operational activities and tasks. Examples include receptionists, business office staff, and environmental workers who have less regular direct care with clients and residents.

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Distribution

of the

L o n g -T e r m C a r e W o r k f o r c e

The US Census Bureau regularly conducts the American Community Survey (ACS) to collect up-to-date information regarding characteristics of the US population. Unlike the census survey, the ACS collects and surveys a large sample of households over a period of one year. This survey provides a rich source of timely and reliable information related to jobs and occupations. A recent analysis of the 2018 ACS data by the Kaiser Family Foundation (True et al. 2020), as presented in exhibit 12.1, provides the estimated number and share of long-term care workers employed in SNFs, ALFs, and home health agencies. In 2018 the majority (53 percent) of 4.5 million long-term care workers were aides and personal care workers who provide personal care and come into direct and frequent contact with long-term care patients or residents. Other long-term care workers include direct contact support workers (16 percent), managers and other support workers (13 percent), healthcare providers (14 percent), and social workers and other behavioral health workers (3 percent). As the number of older adults continues to increase, families are seeking ways for older relatives to remain in their homes safely. These trends are fueling demand for personal care and home health aides who assist older adults with ADLs and household tasks. More than two million persons work as aides who provide personal care in the home (PHI 2021b). Home and personal care aides are among the fastest-growing jobs in the United States, and the demand for these jobs has been projected to grow faster than any other occupation from 2020 to 2030 (BLS 2022b). According to the US Centers for Disease Control and Prevention (CDC 2018) and as illustrated in exhibit 12.2, in 2016, aides provided more hours of care in the major

EXHIBIT 12.1 Distribution of Long-Term Care Workforce by Setting and Job

Type of Long-Term Care Setting Skilled Nursing Facilities

Aides & personal care workers

33%

Assisted Living Facilities

Home Health

Type of Long-Term Care Worker

42%

Direct contact support workers 3% Health care providers Social & behavioral health workers

25%

Other support workers & managers

16%

14%

53%

13%

Long-Term Care Workforce in 2018 = 4.5 million Source: S. True et al., “COVID-19 and Workers at Risk: Examining the Long-Term Care Workforce,” Issue Brief, April 23, 2020, www.kff.org/coronavirus-covid-19/issue-brief/covid-19-and-workers-at-risk-examining-the-longterm-care-workforce/, accessed August 20, 2022. (See True et al. 2020).

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EXHIBIT 12.2 Distribution of US Long-Term Care Staffing Hours, 2016

100 Aide Registered nurse Licensed practical or vocational nurse Activities director or staff member Social worker

90 76%

80 70

339

Percentage

59% 60 50

39%

40

30%

30 20

21%

10 0

15%

13% 5%

Nursing home

7% 2%

6%

10%

9% 1%

Residential care community Sector

6%

Adult day services center

Source: CDC (2018).

sectors of long-term care than did workers from the other staffing types. Aides accounted for 59 percent of all staffing hours in nursing homes, compared with licensed practical or vocational nurses (21 percent), registered nurses (13 percent), activities staff members (5 percent), and social workers (2 percent). In addition to home care, aides accounted for the most staffing hours across longterm settings that include nursing homes (SNFs), residential care communities (ALFs), and adult day services. Aides accounted for 59 percent of staff hours in nursing homes, 76 percent of staff hours in residential care communities, and 39 percent in adult day services centers (CDC 2018). From an administrator’s perspective, these data reflect an important challenge: growing consumer demand for direct care workers with minimal training and skills. Demand

and

S u p p ly

Like other developed countries, the United States is getting older. By 2060, there will be about 94.7 million older persons across the nation, an over two-and-a-half-fold increase in the number of older adults from the year 2000 (US Census Bureau 2021). This growth in the number and percent of older Americans is raising concern that long-term care workers are likely to be in short supply.

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According to the BLS (2019), the job outlook and ten-year projections for longterm care workers indicate growing demand across all categories of long-term care workers. The number of personal aides is expected to grow 36 percent, from 2.4 million in 2018 to 3.3 million in 2028. Similarly, the number of home health aides is expected to grow 37 percent, from 831,000 in 2018 to 1.1 million in 2028 (BLS 2019). Long-term care and support workers at all skill levels have been found to have lower earning profiles than their counterparts from other healthcare sectors (Himmelstein and Venkataramani 2019). These findings were supported in a study of trend data from the American Time Use Survey (Muench et al. 2020) that reported a higher likelihood of poverty for long-term care workers when compared to other healthcare workers. Personal care and home health aides earned an average annual wage below $30,000, close to the minimum wage. This finding is also reflected in the analysis by True and colleagues (2020) of 4.5 million long-term care workers from the 2018 American Community Survey (see exhibit 12.3) indicating that 58 percent of long-term care workers earned less than $30,000 (see True et al. 2020). Additional results indicate that 82 percent were women, 38 percent were aged 50 or older, and 26 percent were non-Hispanic Blacks (True et al. 2020). Muench and colleagues (2020) also reported on trends related to how long-term care workers spend their time. They found that for all long-term care workers, work and traveling to work were dominant activities. Long job commutes are known to increase stress and fatigue that negatively influence physical and mental health (Clark et al. 2020). In summary, they found that lower-skilled long-term care workers were particularly stressed, in terms of lower wages and higher poverty levels coupled with longer work commutes. These findings suggest ways in which lower-skilled workers, such as personal and home health aides, may be more vulnerable to contracting serious infectious diseases such as COVID-19. EXHIBIT 12.3 Key Characteristics of US Long-Term Care Workforce

82%

58%

38%

26%

Women

Annual wages less than $30,000

Age 50+

Black non-Hispanic

Long-Term Care Workforce in 2018 = 4.5 million Source: S. True et al., “COVID-19 and Workers at Risk: Examining the Long-Term Care Workforce,” Issue Brief, April 23, 2020, www.kff.org/coronavirus-covid-19/issue-brief/covid-19-and-workers-at-risk-examining-the-longterm-care-workforce/, accessed August 20, 2022. (See True et al. 2020).

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In all, these data reflect a managerial challenge: how to handle greater consumer demand for direct care workers despite a workforce constrained by low wages and minimal training. W o r k f o r c e C h a ll e n g e s R e l at e d

to

L o n g -T e r m C a r e A i d e s

Long-term care aides represent the largest component of the long-term care workforce. Specifically, personal and home care aides provide most of the “hands-on” care to chronically and seriously ill as well as functionally impaired individuals in their homes, in ALFs, and in other residential facilities (Stone and Bryant 2019). While demand for aides across long-term care settings is increasing, recruitment efforts are hampered by noncompetitive compensation and inadequate training (Stone and Bryant 2019; Stone and Dawson 2008). There are no federal training requirements or standards for these personal and home care aides. States set their own training requirements, with about a third requiring no more than forty hours of entry-level training (Stone and Bryant 2019). Turnover among aides is high. In 2020, the average annual turnover rate for home aides and caregivers was 65.2 percent (Holly 2021), especially in the first three months on the job (Spetz et al. 2015). Research has found that 44 percent of direct care aides lived below 200 percent of the poverty level, and 28 percent of these workers were uninsured (PHI PolicyWorks 2016). Based on data from a nationally representative survey of home health aides, factors contributing to high turnover rates among home health aides vary by their race and ethnicity. Black home health aides were more likely to leave these jobs because of low pay and lack of educational opportunities, compared with white non-Hispanic home health aides. Hispanic home health aides were more likely than white aides to leave because of lack of respect or problems with the supervisor or agency (Landes and Weng 2019). Such conditions can lead long-term aides and caregivers to feel as though their jobs are not respected and valued (Bishop et al. 2008). Home health, home care, and personal care aides are often referred to as the home care workforce. These workers compose the largest group of paid healthcare providers delivering care in the home, together with acting as the “eyes and ears of the health system” (Stone and Bryant 2019, S444). Stone and Bryant (2019) explain that home aides serve an important role as primary sources of emotional support for clients with serious health conditions; they have the most interactions with family members who are usually a key part of the care team. Home health, home care, and personal care aides often help coordinate communication and care continuity when clients receive services from multiple providers. The jobs of these aides require multitasking and making quick decisions with little supervision and support (Stone and Bryant 2019). Although these complex jobs performed by aides provide evidence that home care aides have the skills and knowledge to be part of home care teams, they are typically excluded from home care teams and approaches (Stone and Bryant 2019).

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Key barriers for including aides in home care teams include the following: ◆◆ Undervaluing of aides. Aides are often referred to as “unskilled” workers, and there is a general lack of awareness of the complex tasks that aides perform. Their low wages and benefits reflect that they are undervalued. However, Osterman (2018) argues that labeling aides as unskilled and low-wage workers does not accurately recognize the complex work of aides and the emotional support they provide to chronically ill and disabled. ◆◆ Limited investment in training. Training for aides varies by state. Sixteen states require some training of specific content, eight states require competency assessment after training, and fifteen states require annual in-service training for home care aides (PHI 2022). ◆◆ Limited scope of practice by many state licensing boards of nursing. Only 16 states allow nurses to delegate maintenance tasks such as medication administration or wound care to aides (Reinhard et al. 2020). In some cases, an aide is the only person in the home to help with life-sustaining activities such as taking medication, and thus some aides may be performing illegal tasks when they are looking after the well-being of their clients in their homes. The relationship between a nurse supervisor and an aide is critical to successfully delegating tasks to aides. Historically, nurses have been cautious about delegating any clinical responsibilities to aides. However, there are changes to nursing practices that encourage empowerment of aides working in home and community-based care (Stone and Bryant 2019). Direct care aides in nursing homes in Ohio were surveyed in 2017, and results suggest that when aides were involved in care planning and managing their workload, turnover among aides was lowered (Hermesch 2020). Leadership that empowers workers such as these direct care aides can help long-term care facilities retain this segment of essential direct care workers. Long-term care occupations have been associated with limited career opportunities and inadequate preparation for new roles and responsibilities (Stone and Harahan 2010). Rules and regulatory policies dealing with long-term care have tended to focus ­primarily on protecting consumers rather than on responding to workers’ concerns (Stone and ­Wiener 2001). Furthermore, providing LTSS is physically demanding—so much so that the direct care workers in long-term care face some of the highest injury rates among all US workers (BLS 2022c). The training received by people in direct care positions is often minimal and incongruent with the importance of long-term care and the complexity of its practice (Stone and Bryant 2012). Expanding home care aides’ knowledge and scope of practice would enable

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nurses to delegate more tasks and would likely reduce costs (Reinhard 2010). However, health facilities often lack individuals who can educate and prepare direct care workers for long-term care careers. Long-term care aides and caregivers deserve to be treated as valued assets. These personal care aides provide the majority of hands-on care to seriously ill, functionally impaired persons in their own homes and those living in long-term care communities. As noted by Osterman (2018), aides provide much more than assistance with everyday activities—they provide emotional support and companionship to many older individuals, especially those living alone. Cost

of

Turnover

The high turnover rate of long-term care workers in all settings is a major human resources management concern. The loss of all types of nurses poses major challenges for long-term care administrators and leaders, as it affects both staffing levels and quality of care for residents. With the impact of COVID-19, turnover of all types of staff is at an all-time high as a result of staffing shortages, burnout, and the emotional impact of residents experiencing social isolation, illness, and death (White et al. 2020). The demoralizing effect of negative media stories about long-term care communities in contrast to the accounts of heroic actions of hospital staff has also had an impact on turnover among long-term care workers. Effects

of

C o v i d -19

on the

L o n g -T e r m C a r e W o r k f o r c e

The COVID-19 pandemic has dramatically changed the US economy and workforce. As work moved from office to virtual settings, workers found that they were working longer hours than before the shutdown because of COVID-19. Worker health and well-being quickly came to the forefront for business leaders and administrators, especially human resources managers (Meiester and Brown 2020). Strategies to reduce worker stress and burnout are getting renewed attention. This attention is especially relevant to the long-term care workforce, which has long been underpaid. A 2021 study by the NORC at the University of Chicago and the National Investment Center for Seniors and Housing Care (NIC) found that 67 percent of independent living communities, 64 percent of assisted living communities, 61 percent of memory care units, and 39 percent of skilled nursing communities had no resident deaths from COVID-19, and that mortality increased as the health and caregiving complexity of residents increased (NIC and NORC 2021). In addition, the Office of Inspector General (OIG 2021) found that 40 percent of residents in nursing homes had been infected with the COVID-19 virus, and nursing home deaths jumped by 32 percent in 2020. The number of COVID-19 deaths in nursing homes in the United States and globally has shone a bright light on long-standing issues related to quality of care, workforce, and living conditions. It has diminished public confidence in nursing

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homes that typically care for individuals with multiple and complex diseases and disabilities. The COVID-19 pandemic has created more interest and discussion related to the future of the long-term care workforce and approaches to care for older adults (Inzitari et al. 2020). Some observers argue that the mortality toll in nursing facilities indicates that nursing homes are unsafe during times of infectious outbreaks. Additionally, the imposition of restrictions of visits from family and friends adversely affected residents’ and caregivers’ quality of life (Inzitari et al. 2020). Rethinking ways to redesign and reform institutional long-term care requires a shift toward a more person-centered and relationship-focused care in which needs and preferences of clients and residents are integrated into how care and services are provided. This means that clients and their families share in decision making and that social as well as medical needs are addressed and met.

O v e r v i ew

of

H u man R esour ces

in

L ong -T erm C are

Providers of long-term care services include residential communities (e.g., nursing homes, assisted living facilities) and nonresidential service providers or agencies that specialize in home health and hospice care. These organizations either are part of a chain (i.e., a multifacility organization) or are independent operators. Larger organizations such as chains tend to have dedicated human resource professionals at their corporate office and designated individuals at specific communities. Centralized human resources departments are responsible for ensuring compliance with human resources laws and regulations, determining staffing levels and compensation, developing policies and procedures, conducting or coordinating new hire orientation and training, and maintaining proper employment records. In most long-term care organizations, the human resources function is decentralized and managed at each individual location. These organizations depend on a small core group of managerial staff to oversee human resources functions, including the day-to-day decisions regarding recruitment, hiring, promotions, and accountability. Typically, these duties are the responsibility of the administrator of the community or agency.

G o al s

a nd

F u nc t ions

The overall function of human resources in long-term care is to ensure that the organization is properly staffed with qualified personnel who can provide care efficiently and effectively. Additional functions include maximizing productivity, improving the quality of work life, and ensuring the organization’s compliance with laws and regulations. Experts generally describe five basic management functions of human resources:

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1. Planning refers to two major activities: (a) forecasting and preparing for the short-term and long-term human resources needs of the organization, and (b) establishing standards (i.e., skills, knowledge, abilities needed) for each position. Without the critical planning function, the other functions would not be necessary. 2. Staffing refers to the recruitment and selection of qualified individuals. This function includes performing job analyses, writing job descriptions, setting compensation and benefit levels, and recruiting, screening, and interviewing potential employees. 3. Training and development refers to orienting new employees to the organization’s policies and procedures, providing ongoing training and mentoring, and developing employees for promotion. 4. Evaluation involves addressing the issues of job performance at the employee level. This function includes conducting performance appraisals and motivating and counseling employees. 5. Employee relations refers to helping to establish and maintain effective working relationships among workers throughout the organization. This function includes recognizing and respecting employee rights (e.g., nondiscrimination, worker safety), monitoring unionization activities, retaining productive employees, and helping to build a culture of mutual respect whereby employees are committed to the organization. The Legal

and

R e g u l at o ry E n v i r o n m e n t

One of the most important duties of human resources personnel is to ensure compliance with federal labor laws. These laws aim to protect workers’ rights and safety, and they address issues in hiring, compensation, promotion, and dismissal. The laws can be grouped into two broad categories: (1) antidiscrimination laws that prohibit discrimination in the workplace, and (2) worker safety laws that protect workers from unsafe work environments. These laws continually change, and therefore human resources personnel must stay abreast of new developments and ensure that the organization remains in compliance. States and local municipalities might have additional laws that further define antidiscrimination and worker safety. Exhibit 12.4 lists key federal laws with which every long-term care administrator should be familiar. These laws address protections for specific groups of individuals, compensation and employee benefits programs, the ability of workers to join unions and collectively bargain for pay, and workplace conditions, environment, and safety.

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EXHIBIT 12.4 Major US Human Resources Legislation

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Employment

Fair Labor Standards Act of 1935

Established minimum wages, overtime pay, and standard work hours; enforced by US Department of Labor (DOL)

Labor–Management Relations Prohibits unfair labor practices and Act (also known as Taft-Hart- restricts political activities of unions ley Act) of 1947 Title VII, Civil Rights Act of 1964

Prohibits discrimination based on gender, race, color, religion, and national origin; enforced by Equal Employment Opportunity Commission (EEOC)

Age Discrimination in Employ- Protects employees and job appliment Act (ADEA) of 1967 cants aged 40 years or older from discrimination in hiring, firing, promotion, layoffs, training, benefits, and assignments Pregnancy Discrimination Act of 1978

Protects female employees who are pregnant against discrimination

Americans with Disabilities Protect individuals with disabilities Act (ADA) of 1990 and the ADA from employment discrimination in Amendments Act (2008) the workplace and other settings Compensation and benefits

Employee Retirement Income Security Act (ERISA) of 1974

Regulates pension and benefit plans for employees; enforced by DOL

Consolidated Omnibus Budget Reconciliation Act (COBRA) of 1986

Allows employees who change jobs to obtain health insurance; enforced by DOL

Older Workers Benefit Protection Act of 1990

Amended ADEA to provide benefits to younger and older workers; enforced by EEOC

Family Medical Leave Act (FMLA) of 1993

Requires employers with 50 or more employees working more than 1,250 hours annually to provide up to 12 weeks of unpaid leave to any employee in a 12-month period for care of a family member or themself; enforced by DOL

Uniformed Services Employment and Reemployment Rights Act (USSERA) of 1994

Allows employees serving in the military to have job protection and benefits extended while serving; enforced by DOL

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Safety and work environment

Health Insurance Portability and Accountability Act (HIPAA) of 1996

Protects the privacy and confidentiality of patient information; enforced by the US Department of Health and Human Services

Pension Protection Act of 2006

Strengthens employer funding requirements for pensions and pension insurance; enforced by DOL

National Defense Authorization Act of 2008

Extends FMLA to include the families of employees in military service

Genetic Information Nondiscrimination Act of 2008

Prohibits insurance companies and employers from discriminating in areas of compensation and benefits based on results from genetic testing; enforced by EEOC

Affordable Care Act (ACA) of 2010

Requires individuals to obtain health insurance and allows children of employees to remain on their parents’ health insurance up to age 26

Obergefell v. Hodges 2015

Legalizes same-sex marriage and requires benefits coverage to same-sex married couples

Occupational Safety and Health Act of 1970

Requires employers to provide a safe and healthy work environment for their employees; enforced by the Occupational Safety and Health Administration (OSHA)

Worker Adjustment and Retraining Notification Act of 1989

Requires employers with 100 or more employees to give employees 60 days’ notice of layoffs and closings

Title VII of the Civil Rights Act of 1964 prohibits discrimination in employment on the grounds of gender, race, color, religion, and national origin, and it is enforced by the Equal Employment Opportunity Commission (EEOC). This law provided the groundwork for later legislation covering specific groups such as individuals aged 40 or older, people with disabilities, pregnant women, same-sex couples, and individuals performing military duty (McSweeney-Feld and Rubin 2013). Many states follow the doctrine of employment at will, under which either party (i.e., employer or employee) can terminate the employment relationship without liability, provided that no contract specifies a definite term and no union agreement is in place. An employer may discharge individuals without cause, and employees are free to quit, strike, or cease working.

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employment at will A doctrine of employment in which the employer is free to discharge individuals without cause and the employee is free to quit, strike, or cease working at any time.

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right-to-work laws Statutes that prohibit employer–union agreements that require union membership as a condition of employment.

workers’ compensation Insurance that provides employees with medical care, rehabilitation services, and financial settlements for

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Some states have right-to-work laws, which prohibit employer–union agreements that require union membership as a condition of employment. The union in question, however, is still responsible for representing all workers in the bargaining unit. In effect, right-to-work laws make it harder for unions to become established. The Employee Retirement Income Security Act (ERISA) of 1974 was the first piece of US legislation to establish regulations for pensions and such employee benefits as life and health insurance. The Affordable Care Act (ACA) of 2010 aimed to extend these provisions through the requirement of health insurance for all employees. Concerns about ensuring safe and healthy work environments led to the Occupational Safety and Health Act of 1970. The act provides guidelines for ensuring a safe workplace and for training workers to maintain safe work conditions. Long-term care is one of the most injury-prone industries in the United States. In 2020, 7.9 workplace injuries or illnesses occurred for every 100 full-time nursing and residential care workers. By comparison, only 2.5 such injuries or illnesses occurred per 100 workers in the construction industry, and only 2.7 occurred per 100 workers in all private workplaces (BLS 2021). Workers’ compensation insures workers against injury during the course of employment. Most states govern the workers’ compensation process and require that employers purchase private insurance or provide self-coverage. Workers’ compensation provides employees with medical care, rehabilitation services, and financial settlements for workplace injuries. In exchange for this coverage, workers forfeit the right to seek legal action and damages.

workplace injuries.

T h e S t r at e g ic R o le

strategic human resources management An alignment of strategic business goals of the organization with human resources to foster innovation and improve motivation, satisfaction,

of

H uman R esour ces

Most successful long-term care organizations understand that human resources is perhaps the most important component in the creation and maintenance of a competitive advantage. However, these same organizations often fail to take human resources into account when making strategic decisions. To address these issues, organizations may engage in strategic human resources management, where there is an alignment of strategic business goals of the organization with human resources to foster innovation and improve motivation, satisfaction, productivity, and eventually overall performance (Society for Human Resource Management 2022). People are invaluable strategic assets in long-term care because they create the culture of caring, which is perhaps the most important competitive advantage in the field. Human resources can best fulfill its role as a strategic partner by hiring the best employees and by training and developing the workforce in support of this competitive advantage.

productivity, and eventually overall performance.

S ta f f i ng The most important human resources management function is making good hiring decisions. All subsequent decisions will lead to failure if the wrong person is selected for the job. The Copying and distribution of this PDF is prohibited without written permission. For permission, please contact Copyright Clearance Center at www.copyright.com.

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discussion of staffing that follows discusses job analysis, job descriptions, compensation, recruitment, the screening of applicants, and interviews.

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staffing The recruitment and selection of qualified individuals to work for

J o b A n a ly s i s

the organization.

Job analysis is the process of collecting information about a job by identifying its particular tasks and duties and understanding the general importance of each. The process involves gathering information about the work environment, which can have a significant impact on the physical requirements of performing a job, and noting the tools and equipment that employees use to complete various tasks. Job analysis also outlines supervisory and reporting relationships and lists the knowledge, skills, and abilities the job requires. The aim is to help the organization improve its performance and productivity.

job analysis The process of collecting information about a job by determining its tasks and duties, including the general importance of each.

Job Descriptions

To select the correct personnel, managers must know what job skills and talents correlate with success in each position. For instance, compassion and a hospitality orientation are extremely important for direct care workers. Thus, a key task in the selection process is to establish the prerequisites for success in a particular position. However, these traits might be less essential for administrators, who would have greater need for vision and strategic thinking. Skill expectations are established by writing a job description. Job descriptions are essential to staffing and human resources management. They guide recruitment, selection, and compensation; help communicate job expectations to employees; and serve as a foundation for performance appraisal. A job description explains the duties of the job and details the minimum qualifications and skills needed to perform those duties. It may also include specifications that describe the required skills and the job’s physical demands. The job description has no set standard for content or format; thus each organization’s set of job descriptions varies. Exhibit 12.5 shows a sample job description for a certified nursing assistant (CNA) position. Certified Nursing Assistants (CNAs) provide high-quality direct care to residents, with compassion and respect. Our CNAs are empowered to do the right thing—make sound independent decisions as they demonstrate patience, initiative, and willingness to assist residents with their needs. We are hiring full-time workers who hold state certification as a CNA. Evening and night shifts available. Hourly rates start at $15.00 with additional shift differential. Excellent comprehensive benefits package includes vision and dental, in addition to a retirement savings plan.

job description A detailed description of the minimum qualifications and skills necessary to perform the duties of a job.

EXHIBIT 12.5 Certified Nursing Assistant (CNA) Sample Job Description

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total rewards The monetary and nonmonetary return provided to employees in exchange for their time, talent, efforts, and results.

compensation The salary or hourly

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T o ta l R e wa r d s

for

L o n g -T e r m C a r e S ta f f

Determining how to reward long-term care staff is a critical component of the strategic human resources planning process. A total rewards model encompasses direct monetary compensation (i.e., salary or hourly pay), indirect financial benefits (e.g., health insurance, vacation, retirement options), nonmonetary rewards such as acknowledgment and recognition, and other rewards with both monetary and nonmonetary elements such as promotion and education reimbursement (McSweeney-Feld and Rubin, 2013). Total rewards must be considered carefully and administered fairly (see the accompanying sidebar “Avoiding Common Total Rewards Pitfalls”).

pay received by an employee.

benefits Indirect financial payments—which may include health insurance, vacation, and retirement options—given to

Recruitment

After the job analysis and job descriptions have been completed, human resources staff can begin to search for and attract potential employees—a process called recruitment. Common recruitment strategies include internal searches and jobs links on a long-term care provider’s website, word of mouth, postings on social media sites, internships, contracts with employment agencies, and overseas searches. Other options include marketing at local job fairs and recruiting from schools and educational organizations.

employees.

recruitment The process of

CRITICAL CONCEPT Avoiding Common Total Rewards Pitfalls

searching for and attracting new employees to the

An organization’s level of total rewards, compared with that of its competitors, can di-

workforce.

rectly affect the organization’s ability to recruit and retain employees. A wise approach is to continually scan the market for similar organizations and ensure that reward packages remain competitive. Because many direct care positions in long-term care have low wages, organizations need to track the rewards of other industries that may also attract minimum-wage workers. Avoid the common pitfall of developing rigid pay scales that prohibit raises for exemplary employees who are at the top of the scale. These policies may save money, but they drive employees to competitors with more flexible pay policies. Attractive benefit options—such as affordable health insurance, subsidized transportation benefits, time off, and tuition remission for the educational advancement of the direct care workforce—can help an organization retain dedicated staff in the long-term care field.

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Screening

and

Background Checks

The long-term care workforce undergoes extensive preemployment procedures to ensure that candidates have the appropriate background to work in the field. This screening involves conducting various criminal background checks, reviewing registration boards for clinical personnel, testing for drug use, and extending on-the-job training. Federal regulations require nursing homes to check their state nursing registries to ensure that workers are certified to perform the work, meet all state requirements, and do not have a history of abusing or neglecting clients or misappropriating resources associated with their license (Code of Federal Regulations 2016a). In 1987, the Omnibus Budget Reconciliation Act (also known as the Nursing Home Reform Act) mandated the implementation and updating of nurse aide registries at the state level (Code of Federal Regulations 1991). Each state is required to keep track of individuals who have successfully completed a nurse aide training and competency evaluation. The National Background Check Program for Long-Term Care Providers was included in the Affordable Care Act as another means to ensure resident safety and protection from abuse (CMS 2021). This voluntary program offers state grants to encourage participation and assists with developing systems for conducting background checks for employees who will have direct access to patients or residents. CMS has awarded more than $65 million to 28 states (CMS 2021); however, some of these states have been unable to meet the requirements for continued funding (OIG 2022).

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screening Preemployment procedures (e.g., conducting a criminal background check, testing for drug use, reviewing registration boards for clinical personnel) to ensure that workers are qualified to do the job for which they would be hired.

Interviewing

After candidates have been screened and the field of applicants has been reduced to finalists for a particular position, the human resources department conducts an interview of those candidates, which is an extremely effective way to evaluate potential hires. Interviewers should prepare well for each interview and thoroughly understand the nature of the job. They should study the job description and be familiar with the culture and norms of their organization so they can assess each candidate’s fit and make an informed hiring decision. Some organizations now opt for group interviews of potential candidates, which allow interviewers to compare the answers of individuals being considered for the same position at the same time. Interviewers should use open-ended questions so that the candidate has an opportunity to speak and describe experiences relevant to the job opening. This format allows interviewers to pick up clues about the applicant’s recurring patterns of behavior. Practiced interviewers can use group interviews and open-ended questions to elicit information about the applicants’ values, the way they handles stress, their behavior in various situations, and the extent of their commitment to the field.

interview The process in which a prospective employee (the interviewee) answers questions so that the prospective employer (interviewer) can obtain information to use in making a hiring decision.

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T r a i ni n g

onboarding The process through which new employees gain the necessary knowledge, skills, and behaviors to become

a nd

D e ve lopment

Training is one of the chief functions of human resources management, and it begins with an examination of the development needs of the organization. For instance, what skills and knowledge are critical to achieving success on the job? What are the new trends in the industry? What changes in law have occurred? Some states may require in-service training sessions for direct care workers and staff; others have limited continuing education requirements for administrative or clinical staff. A common training situation for new hires is orientation, frequently referred to as onboarding. Onboarding guides new employees through the basic procedures necessary to function on the job. It may include a tour of the facility, a review of drug use policies and other general employment policies, and information about how to enroll in health and retirement benefits. Human resources management is responsible for ensuring that all employees receive appropriate on-the-job training.

effective members of an organization.

evaluation The assessment of an employee’s job performance.

performance appraisal A systematic employee review that occurs on a regular basis in which employees receive feedback about their job performance.

P e r f o r ma n c e A p praisa l Another key function of human resources management is to assess employees’ job performance and provide them with feedback. Employees want to receive objective feedback about their behavior, and delivering it takes skill and tact. The evaluation process includes a systematic performance appraisal, motivational incentives, and counseling. Historically, this process has been done on an annual basis. The performance appraisal is typically tied to compensation and may determine promotion and advancement opportunities; thus, it is a serious undertaking and a useful tool in motivating the workforce. An effective performance appraisal clarifies the standards of performance for both the employer and the employee; these standards have their foundation in the job description. Each party should understand how job performance is measured and how the appraisal process affects compensation. Because of staffing shortages in the long-term care industry, performance appraisals are done more frequently than the historical standard of once a year, as more frequent appraisals can help provide valuable feedback to employees as well as faster opportunities for promotion and advancement. P r o b at i o n a ry P e r i o d

Most states have laws that allow employers to set a probationary period for new employees. However, many organizations make the mistake of ignoring this opportunity to help the new hire start their job in a position to succeed. This period is the best time to help the new hire understand the expectations of the job and determine whether they are a good fit with the organization. In other words, when an employee is not

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performing adequately during the initial probationary days and coaching sessions and on-the-job training do not seem to help, terminating their employment might be the wisest decision. If employers allow the probationary period to pass without acting, termination becomes incrementally harder and more time consuming for the organization.

Coaching

and

Mentoring

Some employees need coaching, which is a supervisor-led series of interactions with an employee to enhance a specific set of skills and abilities identified as deficient. Other staff that are new in their jobs can benefit from mentoring programs, where a relationship based on trust and mutual respect between a skilled and experienced individual not in a supervisory role with the individual desiring to build specific knowledge, skills, and abilities. The mentor acts as a confidant, role model, and often counselor for the mentee. (Coaching and mentoring were addressed in greater detail in chapter 10.) Typical issues addressed in coaching include attendance and professionalism. Some professional associations in the long-term care industry, such as the American College of Health Care Administrators (ACHCA), have developed mentoring programs for early career administrators by seasoned administrators that are members of their organization (Olson et al. 2021).

Turnover

and

Retention

Turnover refers to the voluntary or involuntary termination of employment. It can also include movement from one position to another by means of promotion or transfer. High rate of turnover is a serious concern in long-term care. High turnover significantly drains a provider’s bottom line. Turnover in nursing homes was estimated to be a median rate of 94 percent, and a mean rate of 128 percent in 2017 and 2018, with turnover rates for specific positions of 140.7 percent for RNs, 129.1 percent for CNAs, and 111.4 percent for LPNs (Gandhi, Yu, and Grabowski 2021). Turnover also has other indirect costs that tend to be overlooked, such as the risk of lower quality of care associated with worker inexperience and lower employee morale related to a team’s inability to remain intact. Another indirect cost may be incurred when remaining workers are given more work to make up for a vacancy, resulting in greater stress and decreased job satisfaction. Nursing aide turnover is especially disruptive to the long-term care process because aides provide most of the essential care to residents and patients.

turnover The termination of employment, whether voluntary or involuntary, or movement from one position to another by means of promotion or transfer.

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Organizational Culture

The retention of workers requires creating an organizational culture of respect. After all, the direct care workers should be afforded respect themselves if they are expected to respect residents and consumers during the provision of care. Total rewards are important, but they are not a lasting motivator. Therefore, other incentives are necessary to retain staff. Research indicates that staff members, such as nurses and nursing assistants, stay at an organization when they perceive that they have access to support, resources, and information to succeed in their roles. Thus, employees typically remain with organizations in which they feel valued, listened to, and part of a team (Hayes et al. 2012). Use of a Retention Specialist

Another approach to the retention challenge involves hiring or designating a retention specialist. The person in this role focuses their efforts on evaluating the needs and resources of employees and customizing a retention strategy for the organization, working in conjunction with human resources personnel. Pillemer and colleagues (2008) found that using a retention specialist decreases turnover.

Recognition

Providing employees with greater recognition, either at the individual level or at the industry level, may also help with the retention issue. At the individual level, employees who understand and exemplify organizational standards should be celebrated for their commitment. Supervisors should engage outstanding frontline employees and reward their efforts. When employees are recognized for positive behavior, they are likely to repeat such behavior. At the industry level, organizations can launch campaigns to share success stories with the community and other audiences.

C u lt u r a l C o m p e t e n c e

in

L o n g -T e r m C a r e S e t t i n g s

As defined in chapter 8, cultural competence is the ability of individuals and organizations to understand the attitudes, beliefs, and traditions of clients from diverse cultures and to use this understanding to develop practices that are sensitive, appropriate, and effective. If an organization fails to address cultural diversity, employee unrest can lead to turnover. As previously discussed, the long-term care industry can ill afford to have direct care workers leave their job for any reason, let alone because of cultural conflict.

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Cultural competence in long-term care demands that employees respect and value other cultures. It requires understanding of diverse individuals’ attitudes toward self-care, perceptions of family visits, familiarity with food choices, level of reluctance to ask for help, and attitudes toward supervision. The recipient of care should feel as much at home as possible in the care setting. The organization’s leadership must send a clear message that cultural competence is valued and respected; otherwise, the employees who need it most will not value or be committed to the idea. Mandatory diversity training can help make the message clear to all employees. The goals of a cultural sensitivity training program should be to (1) foster good communication and (2) prevent discrimination and harassment.

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labor union A group of workers that organizes for the purpose of furthering the social and economic well-being of its membership.

National Labor Relations Act (NLRA) A 1935 law that provides specific

Working

with

Unions

A labor union is a group of workers who organize to further the social and economic well-being of its membership. The unionization process is governed by the 1935 National Labor Relations Act (NLRA), later amended by the 1947 Labor–Management Relations Act (LMRA), which was amended in 1974 to include coverage of employees working in nursing homes and private hospitals. In 2021, 10.3 percent of all wage and salary workers in the United States—14 million workers—belonged to unions; union membership for healthcare practitioners and technical occupations was 11.7 percent, while for those working in healthcare support occupations, it was 8.3 percent (BLS 2022c).

guidelines to govern the relationship between unions, organizations, and workers. Also called the Wagner Act.

Labor–Management Relations Act (LMRA) A 1947 law that defines and prohibits unfair labor practices by

90-Day Notice Requirement

A party to a collective bargaining contract that includes a healthcare organization must provide a 90-day notice to the other party prior to contract expiration. Additionally, it must provide the Federal Mediation and Conciliation Service (FMCS) a 60-day notice. Other industries need only provide 60-day and 30-day notices, respectively. The additional 30 days allow healthcare organizations to prepare so that patient care does not suffer.

unions. Also called the Taft-Hartley Act.

mediation An intervention in which a neutral third

Mandatory Mediation

Parties involved in a dispute are required to participate in mandatory mediation—an intervention in which a neutral third party attempts to assist two parties in reaching a mutually agreed on solution—if the FMCS believes that the threat of a strike or an actual strike will “substantially interrupt the delivery of healthcare,” according to the Labor–Management Relations Act (LMRA; 29 USCS Sec. 141–197, 1947). In such cases, the director of the FMCS has the authority to appoint a board of inquiry to investigate and issue nonbinding recommendations.

party attempts to assist two parties in reaching a mutually agreed on solution.

strike An organized work stoppage orchestrated by a union.

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A Look Ahead Workforce issues are perhaps the biggest challenge facing the long-term care system, and they will continue to be for the foreseeable future. In the long term, the industry depends on the ability of human resources to confront the myriad issues involved in caring for an aging population and individuals living with disabilities. In the years ahead, human resources management will have to respond to new trends in a changing field, address staff shortages and employee retention, ensure cultural competence, and adapt to changes in the external regulatory environment. Though demand has increased across all areas of long-term care, the area experiencing the greatest growth is home and community-based care that enables older adults to age in place (Yee-Melichar, Flores, and Cabigao 2014). The number of people in long-term care occupations has been projected to grow by 79 percent between 2010 and 2030 (Spetz et al. 2015). Social workers, counselors, community and social service workers, and home health and personal care aides have been projected to experience the most growth, with about 1.2 million additional jobs expected by 2030 (Spetz et al. 2015). This growth will require organizations to pay greater attention to the supply, training, and retention of workers. Industry trends have fueled demand particularly for home health and personal care aides to help older clients live safely at home and in the community. SNFs depend on nurses more than other long-term care settings do, whereas caregivers and nursing assistants are used more in residential care facilities such as ALFs than in home health. In short, the need for skilled personnel will skyrocket, and human resources will have to come together to address this critical need. Without decisive action by both private and public sectors to develop a qualified workforce, this problem will worsen, culminating in a crisis, as reported by the PHI (2021a). Expanding the long-term care workforce will require the collaboration of private and public sectors to structure financial incentives, such as education loan forgiveness, to attract administrators and clinicians. Government entities can use grants, scholarships, and federal traineeships in support of the expansion effort. For instance, the US Department of Labor’s apprenticeship program combines classroom instruction and on-the-job training with opportunities for career advancement in long-term care (US Department of Labor, Employment and Training Administration 2022a). Other initiatives can train older workers and retirees to fill the gap between demand and supply of workers. The Senior Community Service Employment Program, a Department of Labor initiative that provides training for lowincome, unemployed adults aged 55 or older, has had success in this effort (US Department of Labor, Employment and Training Administration 2022b). Despite a multitude of changes, the long-term care industry will continue to rely heavily on its people, and the care that those people provide will remain the competitive advantage that differentiates providers in the marketplace. As such, the future of long-term care depends on the effective, strategic work of human resource professionals in attracting, recruiting, and retaining qualified staff.

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For Discussion 1. What characteristics of the long-term care workforce makes management of this group unique? 2. What are the four broad categories of the long-term care workforce? 3. What group of employees makes up the majority of the long-term care workforce? 4. List and briefly describe the five basic functions of human resources. 5. What laws guide employment practices and aim to protect workers from discrimination? 6. What are several methods for recruiting employees? 7. Why do human resources managers need to screen workers entering the long-term care workforce? What does screening entail? 8. What are the direct and indirect costs associated with turnover? 9. What are some key issues related to retention of the long-term care workforce? 10. Why is unionization of the long-term care workforce a major issue for long-term care employers, and how can they address it?

C a s e S t u d y : R e ta i n i n g C e r t i f i e d N u r s i n g A s s i s ta n t s Certified nursing assistants are the backbone of long-term care. CNAs are assigned many of the basic tasks that nurses used to perform, such as toileting and bathing. These direct care workers face inadequate compensation and benefits, as well as racial and gender disparities from being a heavily female, racially diverse, and immigrant workforce. Poor job quality also drives high turnover and widespread vacancies across long-term care, undermining care quality and continuity, as reported by PHI (2021a, 2021b). In addition, 28 percent of nursing homes continue to experience staffing shortages, especially among nurse aides, as a result of COVID-19 (Ochieng, Chidambaram, and Musumeci 2022), and 94 percent of nursing homes are struggling to hire staff (Brown 2021). To address these concerns, long-term care administrators must be proactive and develop programs to retain these valuable employees. However, to develop effective programs, administrators first need to understand the underlying factors that help retain CNAs. Changes in pay and benefits for direct care workers can help address some of these challenges, but it is emotional benefits—being part of a process that is making a difference in the lives of older adults and people with disabilities needing care—that can help retain workers (Berridge, Tyler, and Miller 2018). Several states and organizations have launched initiatives to retain CNAs. Cooperative Home Care Associates in the Bronx, New York, a worker-owned organization, provides a robust training program to nursing assistants along with guaranteed employment and benefits package, opportunities for advancement, and other benefits (PHI 2021a). WisCare

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Careers in Wisconsin trained nearly 3,000 new direct care workers with civil money penalty funds and found them employment within a three years. The state of New York has passed legislation and helped develop programs to build a direct care workforce pipeline from secondary schools to fill direct care worker job openings (PHI 2021a). Other initiatives, such as including CNAs in decision making, may also be promising. For instance, administrators might consider including CNA supervisors in daily staff meetings and strategic decisions. CNAs spend more time working directly with residents, and much can be gained from their unique insight. Such efforts would help address the perceived lack of respect that causes many CNAs to leave the profession. Programs such as these go a long way toward showing that CNAs are a valuable part of the long-term care workforce.

Case Study Questions 1. What are the key reasons CNAs leave their jobs? 2. Using the answer from the previous question, design a program to retain CNAs in a long-term care community of your choice. Remember to provide citations for any sources used. 3. State how your initiative resolves two or more of the main reasons that CNAs leave the profession.

References American Academy of Physician Assistants. 2022. “What Is a PA?” Accessed August 23. www.aapa.org/what-is-a-pa/. American Health Care Association (AHCA) / National Center for Assisted Living (NCAL). 2022. “Next Steps for Facilities Using 1135 Waiver for Training and Certification of Nurse Aides.” AHCA/NCAL blog. Published April 8. www.ahcancal.org/News-and-Communications/Blog/Pages/Next-Steps-for-Facilities-Using-1135-Waiver-for-Training-and-Certification-of-Nurse-Aides.aspx. Berridge, C., D. A. Tyler, and S. C. Miller. 2018. “Staff Empowerment Practices and CAN Retention: Findings from a Nationally Representative Nursing Home Culture Change Survey.” Journal of Applied Gerontology 37 (4): 419–34. Bishop, C. E., D. B. Weinberg, W. Leutz, A. Dossa, S. G. Pfefferle, and R. M. Zincavage. 2008. “Nursing Assistants’ Job Commitment: Effect of Nursing Home Organizational Factors and Impact on Resident Well-Being.” Gerontologist 48 (Suppl. 1): 36–45. Copying and distribution of this PDF is prohibited without written permission. For permission, please contact Copyright Clearance Center at www.copyright.com.

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Muench, U., M. Jura, J. Spetz, R. Mathison, and C. Harrington. 2020. “Financial Vulnerability and Worker Well-Being: A Comparison of Long-Term Services and Supports Workers with Other Health Workers.” Medical Care Research and Review 78 (5): 607–15. Musumeci, M. B., E. Childress, and B. Harris. 2022. State Actions to Address Nursing Home Staffing During COVID-19. Kaiser Family Foundation Issue Brief. Published May 16. www.kff.org/medicaid/issue-brief/ state-actions-to-address-nursing-home-staffing-during-covid-19/. National Center for Health Workforce Analysis. 2018. Long-Term Services and Supports: Direct Care Worker Demand Projections, 2015–2030. US Department of Health and Human Services. Published March. https://bhw.hrsa.gov/sites/default/files/bureauhealth-workforce/data-research/hrsa-ltts-direct-care-worker-report.pdf. National Investment Center for Seniors and Housing Care (NIC) and NORC at University of Chicago. 2021. The Impact of COVID-19 on Senior Housing. Published June. https://info. nic.org/hubfs/NORC_NIC_2021_Study_Overview_2.pdf. Ochieng, N., P. Chidambaram, and M. Musumeci. 2022. Nursing Facility Staffing Shortages During the COVID-19 Pandemic. Kaiser Family Foundation Issue Brief. Published April 4. www.kff.org/coronavirus-covid-19/issue-brief/ nursing-facility-staffing-shortages-during-the-covid-19-pandemic/. Office of Inspector General (OIG). 2022. “National Background Check Program for LongTerm Care Providers: An Interim Assessment.” Published May 9. https://oig.hhs.gov/ oei/reports/OEI-07-20-00181.asp. ———. 2021. “COVID-19 Had a Devastating Impact on Medicare Beneficiaries in Nursing Homes During 2020.” Published June 22. https://oig.hhs.gov/oei/reports/OEI-02-2000490.asp. Olson, D. M., S. Lester, W. A. McGinley, and E. P. Lollis. 2021. “Guiding to Greatness: The American College of Healthcare Administrators’ National Mentoring Program for Long-Term Care Administrators.” Journal of Health Administration Education 38 (2): 579–90.

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Sollito, M. 2022. “Medicaid’s ‘Cash and Counseling’ Allows Pay for Family Caregivers.” AgingCare. Accessed May 18. www.agingcare.com/articles/medicaid-cash-and-counseling-allows-pay-for-family-caregivers-133268.htm. Spetz, J., L. Trupin, T. Bates, and J. M. Coffman. 2015. “Future Demand for Long-Term Care Workers Will Be Influenced by Demographic and Utilization Changes.” Health Affairs 34 (6): 936–45. Stone, R. I., and N. Bryant. 2019. “The Future of the Home Care Workforce: Training and Supporting Aides as Members of Home-Based Care Teams.” Journal of the American Geriatrics Society 67 (S2): S444–S448. ———. 2012. “The Impact of Health Care Reform on the Workforce Caring for Older Adults.” Journal of Aging & Social Policy 24 (2): 188–205. Stone, R. I., and S. L. Dawson. 2008. “The Origins of Better Jobs Better Care.” Gerontologist 48 (1): 5–13. Stone, R. I., and M. Harahan. 2010. “Improving the Long-Term Care Workforce Serving Older Adults.” Health Affairs 29 (1): 109–15. Stone, R. I., and J. M. Wiener. 2001. “Who Will Care for Us? Addressing the Long-Term Care Workforce Crisis.” Office of the Assistant Secretary for Planning and Evaluation, US Department of Health and Human Services. Published April 30. https://aspe.hhs.gov/ basic-report/who-will-care-us-addressing-long-term-care-workforce-crisis. True, S., J. Cubanski, R. Garfield, M. Rae, G. Claxton, P. Chidambaram, and K. Orgera. 2020. “COVID-19 and Workers at Risk: Examining the Long-Term Care Workforce.” Kaiser Family Foundation (KFF) Issue Brief. Published April 23. www.kff.org/coronavirus-covid-19/ issue-brief/covid-19-and-workers-at-risk-examining-the-long-term-care-workforce/. US Bureau of Labor Statistics (BLS). 2022a. “Occupational Employment and Wages, May 2021.” Modified March 31. www.bls.gov/oes/current/oes311131.htm.

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———. 2022b. “Occupational Outlook Handbook: Most New Jobs.” Modified April 18. www.bls.gov/ooh/most-new-jobs.htm. ———. 2022c. “Union Members Summary.” News release, January 20. www.bls.gov/news. release/union2.nr0.htm. ———. 2021. “Employer-Related Workplace Injuries and Illnesses, 2020.” News release, November 3. www.bls.gov/news.release/osh.nr0.htm. ———. 2019. “Monthly Labor Review: Projections Overview and Highlights, 2018–28.” Published October. www.bls.gov/opub/mlr/2019/article/projections-overview-andhighlights-2018-28.htm. US Census Bureau. 2021. “National Population Projections: Summary Tables.” Revised ­October 8. www.census.gov/data/tables/2017/demo/popproj/2017-summary-tables.html. US Department of Labor, Employment and Training Administration. 2022a. “Open Funding Opportunities.” Apprenticeship.gov. Accessed July 2. www.apprenticeship.gov/ investments-tax-credits-and-tuition-support/open-funding-opportunities. ———. 2022b. “Senior Community Service Employment Program.” Accessed July 2. www. doleta.gov/agencies/eta/seniors. Werdegar, D., C. M. Flores, and A. Caldwell. 2014. “Community-Based Programs and Services.” In Long-Term Care Administration and Management: Effective Practices and Quality Programs in Eldercare, ed. D. Yee-Melichar, C. M. Flores, and E. P. Cabigao, 27–52). New York: Springer. White, E., T. F. Whetle, A. Reddy, and R. R. Baier. 2020. “Front-Line Nursing Home Staff Experiences During the COVID-19 Pandemic.” Journal of Post-Acute and Long-Term Care Medicine 22 (1): 199–203. https://doi.org/10.1016/j.jamda.2020.11.022. Yee-Melichar, D., C. M. Flores, and E. P. Cabigao. 2014. Long-Term Care Administration and Management: Effective Practices and Quality Programs in Eldercare. New York: Springer.

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CHAPTER 13

LEGAL AND ETHICAL ISSUES IN LONG-TERM CARE Mary Helen McSweeney-Feld, PhD, and Philip C. DuBois, MS, LNHA, FACHCA

Learning Objectives After studying this chapter, you should be able to ➤➤ explain the concept of federalism as it applies to the United States legal system; ➤➤ differentiate between criminal and civil law cases; ➤➤ identify common legal cases healthcare administrators encounter in long-term care settings; ➤➤ explain the use of advance directives, such as the healthcare proxy, living will, and physician orders for life-sustaining treatment; ➤➤ apply principles of healthcare ethics when confronted with an ethical dilemma; ➤➤ understand the importance of health care ethics committees for long-term care communities; ➤➤ articulate practical implications of the Elder Justice Act; ➤➤ explain services and resources offered by the Long-Term Care Ombudsman program; and ➤➤ discuss the role of compliance plans and ethical decision-making strategies in a postCOVID-19 environment. 366 Copying and distribution of this PDF is prohibited without written permission. For permission, please contact Copyright Clearance Center at www.copyright.com.

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Healthcare administrators are confronted with myriad federal, state, and local regulations. Long-term care organizations must follow these regulations in their policies and procedures to avoid legal sanctions. Administrators should also be aware of the ethical principles underlying their actions and decisions in providing long-term care. With experience, administrators can gain a deeper understanding of the specific regulations and ethical concerns that relate to their field. This chapter provides an overview of healthcare law and ethics as they apply to long-term care.

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federalism The concept in United States law recognizing that each state has the right to pass its own laws as long as they are not prohibited by or contrary to the US Constitution.

O v e r v ie w

of

L e g al I s s u e s

federal law

We begin with a brief description of the framework of US law, including the foundational concept of federalism and the distinctions between civil law and criminal law, with an emphasis on their applicability to healthcare. There are many key terms in this opening section that administrators of long-term care organizations must understand to be effective leaders and avoid legal trouble.

The body of law consisting of the US Constitution, federal statutes and regulations, US treaties, and federal common law.

The Concept

of

Federalism

in

T h e U n i t e d S tat e s

Law in the United States is based on the concept of federalism. Each state is free to pass its own laws, or statutes, as long as those laws are not prohibited by and do not contradict the US Constitution. The Tenth Amendment to the Constitution, the last amendment in the Bill of Rights, states: “The powers not delegated to the United States by the Constitution, nor prohibited by it to the States, are reserved to the States respectively, or to the people.” Federal law includes the US Constitution, federal statutes and regulations, US treaties, and federal common law. However, the federal government’s ability to compel a state to enforce federal law is limited. In the 1992 case of New York v. United States, for example, the US Supreme Court invalidated a portion of a federal law because it mandated the state to implement federal regulations.

common law Law based on custom and judicial precedent rather than on written statutes.

civil law The area of law dealing with cases brought by individuals, corporations, or governmental authorities to enforce a right or to collect damages when injuries have occurred.

C i v i l L aw

Civil law deals with cases brought by individuals, corporations, or governmental authorities to enforce a right or to collect damages when injuries have occurred. In civil law cases, the party bringing the lawsuit to court is the plaintiff, and the party being brought to court is the defendant. A civil case is initiated when the plaintiff serves the defendant with a summons and complaint. The summons indicates which court is hearing the case, and the complaint contains the sworn allegations of fact that form the basis for the case. The defendant has to answer the summons within a certain amount of time.

plaintiff A person or party bringing a case against another in a court of law.

defendant A person or party being sued or accused of a crime in a court of law.

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tort A civil wrong for which a plaintiff may collect money for damages.

Health Insurance Portability and Accountability Act (HIPAA) of 1996 A US law that protects health insurance coverage for workers who change or lose their jobs, establishes national standards for electronic healthcare transactions, and seeks to maintain the privacy and security of individuals’ health information.

ADA Amendments Act (ADAAA) of 2008 A US law supplementary to the Americans with Disabilities Act that broadened the definition of disability to an impairment that substantially limits major life activities, where there is a record of such impairment, or the individual is regarded as having such an impairment.

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A common type of civil case in healthcare involves a patient, or the patient’s family or guardian, suing an institution for money to compensate for damages. This type of case falls under the legal area known as tort law. Many healthcare-related civil cases arise from care, or lack of care, that deviates from written care plans and results in injury to the person receiving care. Thus, organizations should make sure that their care plans conform to standard-of-practice guidelines, and the staff should follow the plans precisely. Organizations can also face fines and legal sanctions affecting licensure if they violate people’s civil rights or breach their privacy rights under the Health Insurance Portability and Accountability Act (HIPAA) of 1996. Title I of HIPAA protects a worker’s health insurance coverage in the event that the worker loses their job. Title II of HIPAA, containing the administrative simplification provisions, requires national standards to be established for electronic healthcare transactions. It also mandates the establishment of national identifiers for healthcare providers, insurance plans, and employers. Another federal law with which healthcare providers must comply is the Americans with Disabilities Act (ADA) of 1990 (introduced and discussed in chapter 2). Under the ADA, long-term care providers may not discriminate against individuals with disabilities in their admission policies, their buildings must allow access for wheelchairs and other assistive devices, and facilities must provide reasonable accommodations to any individual needing entry to or care within the institution. In addition to federal guidelines, the organization must also abide by local fire safety codes and provide for parking availability. The ADA Amendments Act (ADAAA) of 2008 states that disability must be broadly defined to cover more categories of people, and that the focus should be on whether discrimination occurred. Under the ADAAA, a person has a disability if they have an impairment that substantially limits one or more major life activities, have a record of such an impairment, or are regarded as having such an impairment. A medical malpractice suit is a type of civil case that occurs when a doctor or another medical professional is charged with causing damage or harm to a patient through a negligent action (e.g., an error in diagnosing or treating a patient, mismanagement of a patient’s illness, improper administration of medication) or an omission (i.e., failure to take a needed action). This error must represent a breach—that is, a deviation from the generally accepted standard of practice—of the care that a medical professional is expected to deliver under the circumstances. If such an error injures a patient, the patient may be able to win a judgment against the care provider or healthcare institution. Patients or residents may also bring cases against local, state, or federal agencies that operate healthcare facilities, though special requirements must be met before they can file such a suit in court.

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medical malpractice

Criminal law is the area of law dealing with crimes and punishment for crimes. Criminal laws are designed to protect individuals from harm and to prevent fraud, and they are enforced by the appropriate government agencies at the local, county, state, or federal levels. Criminal laws vary from one state to another, and the information presented here is based on general principles that may be applied differently between states. Both individuals and corporations can be charged with a crime. If a corporation is charged, the officers of the corporation may face legal sanctions for their individual actions or for the actions of others for whom they were responsible. A person charged with a crime is known as the defendant and is presumed to be innocent until they either plead guilty or are found guilty after a trial. A crime punishable by a term of imprisonment of no longer than one year is a misdemeanor. A crime punishable by a term of imprisonment of longer than one year is a felony. The term of probation for a felony is longer and can impose more severe restrictions than that for a misdemeanor. A violation of criminal law usually will not result in a criminal record for the individual or the corporation. For instance, if a long-term care provider submits a claim to Medicaid or Medicare that it knows is false, it is subject to a penalty of $10,000 per item or service, in lieu of criminal penalties.

A negligent act or

E n d - o f -L i f e I s s u e s

felony

A number of important legal and ethical issues in healthcare involve the end of a person’s life and the planning for end-of-life decisions. The idea of a “good death” has gained prominence in recent years, and increasing attention has been paid to the individual’s right to plan for death with input from family members and loved ones. Such concerns have led to the development of programs to facilitate end-of-life decision making. One such program, for instance, is the Conversation Project sponsored by the Institute for Healthcare Improvement. In 2016, the Centers for Medicare & Medicaid Services began covering advanced care planning by physicians for patients as a separate and billable service (Kaiser Family Foundation 2016). M e d i c a l A i d -I n -D y i n g

and

D e at h

with

omission by a doctor or other medical professional who has a duty to care for a specific patient that results in damage or harm to that patient. criminal law The area of law dealing with crimes and punishment for crimes.

misdemeanor A crime that is punishable by a term of imprisonment of no more than one year.

A crime that is punishable by a term of imprisonment of more than one year.

D i g n i t y L aw s

Medical aid-in-dying has gained widespread attention in the healthcare field. As explained in chapter 6, medical aid-in-dying (MAID; also known as physician-assisted suicide) involves death intentionally hastened through a physician’s prescription of lethal doses of medication to a patient who is terminally ill and in which the dying person is responsible for deciding if and when the medication is used and for administering the medication. Although medical aid-in-dying is prohibited in most of the country (and

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Death with Dignity statute A law that provides physicians with protection from liability if they prescribe medications for medical aid-indying, provided that (1) the patient has an incurable and irreversible disease that will cause death within six months, (2) the patient has given written informed consent, and (3) the attending physician’s conclusions are confirmed by a second

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usually a felony), some US states have begun to permit it. As of 2022, the District of Columbia and seven states—Colorado, Hawaii, Maine, New Jersey, New Mexico, Oregon, and Washington—have a Death with Dignity statute to give terminally ill individuals greater control over the amount of pain and suffering they endure at the end of their lives (Death with Dignity 2022). In addition, California and Vermont have passed Death with Dignity laws, and a number of states are considering similar initiatives (Death with Dignity 2022). These circumstances and the applicable procedures are strictly set forth by state statutes or court decisions, and the specific requirements for each state are beyond the scope of this textbook. If you are an administrator at a long-term care facility and know of a resident who wishes to undergo medical aid-in-dying, you must immediately contact an experienced attorney who understands the applicable statutes and case law. Recent research indicates that there may be a lack of support in the US Congress for medical aid-in-dying, even though polls of the public are divided yet favorable, and that policymakers who support MAID should consider affirmative policies that (1) prevent MAID policies from discriminating against vulnerable groups, (2) support funding to study the use of MAID, and (3) build avenues to allow all qualified people to access MAID in places where it is legal (Kusmaul, Cheon, and Gibson 2021).

physician.

A d va n c e D i r e ct i v e s

healthcare proxy form A document that

at t h e

End

of

Life

As discussed in greater detail previously in chapter 6, documents known as advance directives enable patients to make their wishes clear to healthcare providers in the event that they are not able to communicate them directly. The patient’s use of advance directives is consistent with the ethical principle of autonomy and the legal right of a competent patient to refuse medical care when such refusal does not present a danger to others. Such documents as do-not-resuscitate (DNR) orders and the Physician Orders for LifeSustaining Treatment (POLST) form, also described in chapter 6, recognize that patients have the right to decide which medical treatments they wish to receive and which they wish to refuse.

permits a competent adult to designate another person as a

Healthcare Proxy Form

healthcare surrogate

A healthcare proxy form enables a competent adult to designate another person as a healthcare surrogate. This designated surrogate can then make healthcare decisions for the patient if the patient can no longer communicate their wishes to the healthcare provider. The healthcare proxy form is designed to provide clear and convincing evidence about the patient’s wishes. Sections of the form allow the patient to specify their wishes about accepting or refusing artificial nutrition and hydration, express their preference to

who can make healthcare decisions for the patient if the patient is unable to make or communicate the decisions directly.

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donate or not donate their organs after death, and write specific instructions regarding end-of-life care. A long-term care facility should ensure that a resident’s healthcare proxy form is entered into the medical chart at the time of their admission to the facility; waiting until after an emergency occurs is unwise, because the resident at that point may no longer be able to communicate. Advance planning ensures that the resident’s wishes can be followed and allows the institution to communicate with the designated healthcare agent without concerns about violation of privacy. If the resident eventually becomes legally incompetent because of illness or trauma, the healthcare proxy remains in effect.

Living Will

The living will is a legal document that details the patient’s wishes regarding the type of medical care they do or do not want performed in the event that they can no longer communicate and medical treatment is artificially prolonging their life. It typically states that the person wishes to be kept comfortable with medications to avoid pain at the end of life. It may direct that the individual’s life not be artificially prolonged by extraordinary measures, such as by life support, if there is no reasonable expectation of recovery. The living will must be signed by the patient and two subscribing witnesses—that is, individuals who witness the execution of an instrument (i.e., the signing of the document) and sign their names as proof of such an execution.

living will A legal document that details the patient’s wishes regarding the type of medical care the patient does or does not want performed in the event that they can no longer communicate and medical treatment is artificially prolonging

The Physician Orders for Life-Sustaining Treatment Form

their life.

As introduced in chapter 6, the POLST form is a document that expresses a person’s end-of-life wishes for medical treatment. As completed by the patient, family members, and the healthcare provider, the POLST converts the patient’s preferences into a medical order that directs first responders and other healthcare providers in respecting the patient’s wishes. The more specific the order is, the easier it is for subsequent healthcare providers to comprehend and follow. Depending on applicable laws, this order may be considered a DNR order within a hospital or nursing home. The use of these orders is governed by individual state statutes. Many states now use POLST forms when transferring an individual to a hospital for treatment or to a long-term care facility. POLST forms are distinctive, sometimes printed on pink paper, and completed by the treating physician. Some states permit a nurse practitioner or physician assistant to complete this form when the physician is not available. It can be considered the corollary to the living will in detailing the patient’s wishes for end-of-life care.

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Patient SelfDetermination Act A US law requiring that patients be given access to information about the healthcare proxy form and living will when admitted to a hospital or facility receiving Medicare funds.

Uniform Health Care Decisions Act (UHCDA) A model statute that facilitates and encourages the making of advance directives.

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The Patient Self-Determination Act and the Uniform Health Care Decisions Act

In 1990, the US Congress passed the federal Patient Self-Determination Act. The law mandated that patients be given access to information about the healthcare proxy form and living will when they are admitted to any hospital or facility receiving Medicare funds. Patients need not complete the forms, but they must be made aware of the forms’ existence. States such as New York and Ohio have maintained a conservative approach to end-of-life care that requires written advance directives, especially in the case of artificial hydration. This statutory scheme is in compliance with federal law but differs from the more liberal approach adopted by the Uniform Health Care Decisions Act (UHCDA). This 1993 model statute was developed to help individuals and medical professionals ensure a person’s right to determine the course of treatment; however, only a small number of states have adopted these provisions. The provisions of the UHCDA state that the healthcare agent may not be one of the two subscribing witnesses. Other states do not require written advance directives and permit family members or spouses to make decisions on the basis of earlier directions related orally by the patient.

E t h i c a l D e c i s i o n M aking

ethics Moral principles that govern the behavior of a person or group.

in

L ong -T erm C are

Years ago, ethical decision making in long-term care was much simpler. Providers did not need to be concerned with such matters as ventilators, dialysis, feeding tubes, and assisted suicide, and largely homogenous communities placed little emphasis on diverse cultural norms and religious views. Many healthcare leaders believed that ethics belonged in the realm of academics, philosophers, and clergy but lacked relevance to their practical situations. The landscape has changed dramatically, however, with changing regulations, advancements in medical technology, changing demographics in society, evolving long-term care needs, and emerging conflicts between resident-centered models of care and strict regulatory oversight. Today more so than ever, ethical decision making in long-term care has become an increasingly complex endeavor. WHAT IS ETHICS?

At its most basic level, ethics involve determining what is right versus what is wrong, and then doing what is right (Dubey 2009). Few people intentionally want to do the wrong thing. For today’s long-term care provider, however, that view of ethical decision making is overly simplistic. In a great variety of situations, caregivers can argue for disparate positions persuasively, passionately, and articulately, while still being motivated by the best interests of the resident. To account for such complexities, scholars have put forth numerous definitions of ethics that approach the concept from distinct directions.

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According to Johnson and Ridley (2008), ethical behavior involves the components of integrity (strictly following a moral code without compromise), nonmaleficence (doing no harm), respect (an attitude of admiration or esteem), beneficence (commitment to the welfare of others), prudence (cautious, thoughtful judgment), compassion (sympathy for another’s suffering), justice (commitment to fairness), autonomy (the right to make one’s own decisions), fidelity (faithfulness to commitments), excellence (surpassing ordinary standards), and judgment (the ability to make sensible decisions). An ethical approach also requires an examination of decisions in two veins: (1) ensuring that the outcome is ethical and (2) ensuring that the process by which the decision is made is ethical. Generally, if the process is fair, the outcome will also be fair (Nelson 2005). Ethics in long-term care are not based on feelings, society’s acceptance, law, or religion (Shafer 1989). Feelings and society’s acceptance can be fickle, and many behaviors are legal but unethical. People from differing religious backgrounds should—indeed, must—agree to core values in the care of residents. Ethical standards must stand apart from these categories and be unchanging. They provide a moral compass during times of turbulence. A healthcare leader should align their staff’s ethical behavior with the organization’s mission, vision, and values (McNamara 2022). The American College of Healthcare Administrators (ACHCA) has a code of ethics for long-term care leaders (see the accompanying Critical Concept sidebar “Code of Ethics”), and many clinical employees in long-term care settings may have a code of ethics for their profession. Employees may come from a wide variety of backgrounds, but the organization’s values should be embraced by all. The staff will take their cues about acceptable behavior from leadership.

CRITICAL CONCEPT Code of Ethics

The American College of Health Care Administrators (ACHCA 2022a), a membership association for long-term care leaders, has an ethics code for its members. Under the code, if an administrator is asked to perform any activity that is illegal or in violation of the code, they must refuse; in such cases, the administrator should report the potential violation of the code to the ACHCA Standards and Ethics Committee (ACHCA 2022b). Superiors and other administrators seldom, if ever, overtly ask other professionals to do something illegal or unethical. Beware, however, of seemingly innocuous favors or expressed desires to cut corners, as these incidents are the ones that usually lead to trouble. As an administrator’s career advances, mistakes are inevitable, and they should view them as learning opportunities, not as a reflection of their character. Their level of integrity, however, must be constant and above any degree of suspicion.

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resident rights Rights for longterm care residents protected under federal and state laws.

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Resident Rights

The Omnibus Budget Reconciliation Act (OBRA) of 1987 spelled out a number of requirements for nursing homes, with the goal of promoting quality of care and quality of life. Included in the law is a list of federally protected resident rights that nursing homes must honor (Social Security Administration 2022). Skilled nursing facilities certified by Medicare and Medicaid also must ensure that resident rights are safeguarded and that administration and staff promote choice, dignity, and self-determination for residents. Residents also have the right to be free from abuse, neglect, misappropriation of their property, and exploitation. Residents are legally required to receive verbal and written notice of the rights and services to which they are entitled during their stay. Communication of these rights must be given prior to or upon admission, as well as throughout their stay, in a language they understand. C h a ll e n g e s

to

Ethical Leadership

Healthcare leaders are individuals with their own personal natures, temperaments, beliefs, and experiences, and they often encounter situations that lack clear right or wrong decisions. Different leaders might reach different decisions in similar cases even if they are all acting prudently and ethically. Key challenges in exhibiting consistent ethical behavior include the following: ◆◆ A leader’s actions and decisions are under constant scrutiny from many sources. ◆◆ Good people can make bad decisions. When a leader is tired, stressed, distracted, or emotional, they may make a different decision than they would have made under other circumstances. ◆◆ The available options are often less than perfect. ◆◆ The need to maintain confidentiality may prevent a leader from sharing information or seeking advice from others. This need may also prevent the leader from being able to correct misperceptions. ◆◆ Forgiveness for mistakes can be difficult to extend, request, and accept. Memories of past mistakes, whether forgiven or not, often influence future decisions. ◆◆ Sometimes a delicate situation requires making a decision without being able to divulge pertinent information to others, leading to ambiguity surrounding the decision or even to perceptions that the decision is unethical or unfair. ◆◆ Ownership, staff, residents, and families likely have diverse values. As more stakeholders are included in the discussion, the diversity of viewpoints and values increases, and disagreements become more likely. Copying and distribution of this PDF is prohibited without written permission. For permission, please contact Copyright Clearance Center at www.copyright.com.

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◆◆ Personal relationships and conflicts of interest can complicate events in the workplace. Particularly in small towns, families and individuals often have histories with one another that predate their long-term care stay. ◆◆ The behavior of staff represents the values of the leader. Staff may exhibit behavior that contradicts the values of the leader, but the “captain of the ship” must still accept responsibility for their actions. A few guidelines can help the ethical leader navigate these challenges and complications. First, a leader must be willing to accept responsibility for their mistakes. Humility is a difficult but admirable quality to display. Second, a leader should recognize their strengths and weaknesses and make accommodations accordingly. For example, an administrator who is not a clinician should seek expert clinical advice when faced with a clinical dilemma. Finally, a leader should always strive to learn and improve. What can be learned from past ethical dilemmas? How can future dilemmas be avoided?

E t h i c s C o m m i tt e e s

in

H e a lt h c a r e O r g a n i z at i o n s

In 1983, the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research called for the establishment of an ethics committee in healthcare organizations. Ethics committees aim to clarify complex issues; improve communication between healthcare providers, patients, and family members; and assist with difficult end-of-life healthcare decisions. Ethics committees are interdisciplinary, and membership varies from one organization to another. Members may include administrators, nurses, social workers, pharmacists, dietitians, legal counsel, medical directors, activities directors, therapists, family members, clergy, ethicists, and representatives of outside agencies. An ethics committee can develop policies, screen admissions, assist with discharge planning, and provide staff education. The committee is independent in its conclusions, and those conclusions are generally followed by the organization, though they are not binding on any party. In the event of a subsequent court case, the ethics committee’s findings become part of the judicial record. As of 2017, Changes in the Federal Long-Term Care Survey, Phase 3, for nursing homes that participate in Medicare and Medicaid require all nursing homes to have an ethics committee as well as a written compliance program, and a compliance officer, under the F tag F895 (Legal Information Institute [LII] 2017). An F tag, or Federal tag, corresponds to a specific regulation in the Code of Federal Regulations (discussed further in chapter 14). As more people become involved in these complex decisions, a variety of perspectives and insights will likely become evident. The resident’s voice must always be heard and carefully considered. Although differing perspectives can lead to conflict, thoughtful, respectful discussions of all viewpoints can help bring about resolution.

ethics committee An interdisciplinary group devoted to resolving ethical dilemmas in healthcare and protecting the rights of individuals receiving care.

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CURRENT ISSUE Crisis Standards of Care and COVID-19

The advent of the COVID-19 pandemic has forced the recognition that rationing of finite health care resources could become a reality in the United States. In turn, the exigencies created have resulted in an obligation on the part of providers (hospitals, longterm-care facilities, and their administrators, doctors, nurses and staff ) to take a fresh look at their customs, practices, and related ethical decision making to ensure that services they provide remain in compliance with the ethical codes of their professions, to the best of their abilities, despite the imposed difficulties. The reality of triaging patients if there is no other option, such as transferring patients to other locations, has been discussed in many venues. Triage—the sorting of and classification of patients or casualties to determine priority of need and proper place of treatment (CDC 2021)—can involve serious ethical dilemmas. Healthcare professionals subscribe to the ethical principles of nonmaleficence, or “do no harm,” and justice, whereby patients are treated fairly. They must all find a way to adjust to the ethical dilemma created by the possibility of making life-or-death decisions under these circumstances. Providers must avoid practices that are influenced by nonmedical factors. In 2009, the Institute of Medicine (IOM) formed an ad hoc committee and generated a letter reporting on how resource allocation and triage decisions could be fairly made under crisis conditions. The letter, entitled “Guidance for Establishing Crisis Standards of Care for Use in Disaster Situations,” introduced a helpful tool for planners focused on the mitigation of such circumstances, now commonly known as crisis standards of care (CSC). The IOM stressed the importance of planning for future incidents when composing CSC, and lists seven key principles that the CSC must reflect: fairness, duty to care, duty to steward resources, transparency, consistency, proportionality, and accountability (Hick et al. 2020). Planning is key to effective CSC, and the primary aim of CSC planning is not to provide a process to make triage decisions but rather to have processes in place that will manage resources effectively enough to avoid triage situations (Hick et al. 2020). A problem with existing CSC plans among some of the 26 states that have them is inequity that may result, with resource allocation impacting people of color, older adults, and people with disabilities (Manchanda, Couillard, and Sivashanker 2020). Inequity refers to how plans may be inadequate in addressing the needs of these populations. Guidry-Grimes and colleagues (2020) state that fairness or providing equity requires that crisis standards of care “are, to the highest degree possible, responsive to the specific needs of individuals and the population.” Thus fairness and equity must be built into the composition of a CSC plan to account for the vulnerabilities of such a population. Proactive, rather than reactive, crisis planning needs to ensure that longterm care communities have the staff and resources needed to cope with a pandemic.

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The importance of ethics committees to guide decision making became particularly evident as the COVID-19 pandemic emerged in 2020 and spread throughout the world, as described in the accompanying Current Issue sidebar “Crisis Standards of Care and COVID-19.” T h e L o n g -T e r m C a r e O m b u d s m a n P r o g r a m

Issues of abuse and neglect in nursing homes gained widespread attention in the late 1960s and early 1970s, and the US Congress began hearing testimony and considering reforms concerning the treatment of residents in long-term care. In 1971, President Richard M. Nixon issued an eight-point presidential directive that included an advocacy program to represent the interests of residents. Pilot programs then began in a few states. In 1978, following the success of the pilot programs, the Long-Term Care Ombudsman Program was incorporated through amendments to the Older Americans Act. The Long-Term Care Ombudsman Program has been expanded to all states on a permanent basis. Today, each state exercises oversight of its own program, meaning that the implementation of responsibilities may vary. A long-term care ombudsman is “an advocate for the rights of residents of nursing homes, board and care homes, and assisted living facilities, and may help to resolve complaints from these residents. Ombudsmen provide information about how to select a facility and what to do to get quality care. They are trained to resolve problems. They also represent the perspective of residents in monitoring laws, regulations, and policies” (Hunt 2008). Residents may ask questions or file complaints with the Office of the State LongTerm Care Ombudsman in their state. A representative, or ombudsman, will visit the longterm care organization on a routine basis to observe and meet with residents, ensuring that resident rights are being honored. A key responsibility of an ombudsman involves ensuring that residents can speak for themselves, upholding their sense of personal power and voice. The ombudsman will usually only investigate or follow up on issues with the consent of the resident or legally responsible party. Generally, concerns can be resolved internally; only in serious or extreme situations will the ombudsman involve the state survey agency. In addition to addressing concerns, the Long-Term Care Ombudsman Program provides education, advocates for laws and policies affecting long-term care residents, and helps with developing family and resident councils (Administration for Community Living 2021; National Consumer Voice 2022). Elder Abuse

and the

long-term care ombudsman An advocate for longterm care residents in the areas of resident rights, quality of care, and resolution of complaints.

Office of the State Long-Term Care Ombudsman An office that exists in every state to carry out federal requirements in advocating for longterm care residents.

E l d e r J u s t i c e A ct

Older adults who are dependent on others, and particularly those who have dementia or other disabilities, can be vulnerable to abuse, neglect, or exploitation. Furthermore, developments in technology have provided fertile soil in which new forms of abuse have taken root. Elder advocates and law enforcement are working to address abuse of all types, from physical abuse to financial exploitation and identity theft. Copying and distribution of this PDF is prohibited without written permission. For permission, please contact Copyright Clearance Center at www.copyright.com.

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elder abuse Mistreatment of an older adult; common types include physical abuse, emotional abuse, sexual abuse, exploitation, neglect, and abandonment.

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What Is Elder Abuse?

Elder abuse can affect older individuals, both men and women, from all social statuses and ethnic backgrounds. The National Center on Elder Abuse (2022) identifies six common forms of elder abuse: 1. Physical abuse—inflicting, or threatening to inflict, physical pain or injury on a vulnerable elder or depriving them of a basic need 2. Emotional abuse—inflicting mental pain, anguish, or distress on an elder person through verbal or nonverbal acts 3. Sexual abuse—nonconsensual sexual contact of any kind, or coercing an elder to witness sexual behaviors 4. Exploitation—illegal taking, misuse, or concealment of funds, property, or assets of a vulnerable elder 5. Neglect—refusal or failure by those responsible to provide food, shelter, healthcare, or protection for a vulnerable elder 6. Abandonment—desertion of a vulnerable elder by anyone who has assumed the responsibility for care or custody of that person

Elder Justice Act of 2010 A United States

Elder abuse historically has been underreported. However, recent studies estimate that one in ten elders experiences some form of abuse, with only one in 24 cases reported to authorities (National Council on Aging 2021). Individuals with dementia and other disabilities are at a heightened risk for such abuse. Research has shown that elder abuse increases an individual’s risk of having additional health problems. It also increases the individual’s risk of death by 300 percent relative to those who have not experienced abuse (National Council on Aging 2021). High-profile victims of elder abuse have included the celebrities Brooke Astor, a wealthy philanthropist, socialite, and writer, and Mickey Rooney, a twentieth-century movie star; and Rooney testified about his experience before the Senate Special Committee on Aging (Fleck and Schmidt 2011). As their stories became known, the need for additional protections became apparent. Stan Lee, the creator of Spider-Man and many other Marvel Comics superheroes, also reportedly suffered from elder abuse before his death in 2018 at age 95 (Hochman 2020).

federal law, part of the Affordable Care Act, to protect elders from

The Elder Justice Act

abuse, neglect, and

The Elder Justice Act of 2010—included as part of the Affordable Care Act—provides federal resources to “prevent, detect, treat, understand, intervene in and, where appropriate,

exploitation.

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prosecute elder abuse, neglect and exploitation” (University of Southern California Leonard Davis School of Gerontology 2015). The law calls for the establishment of abuse, neglect, and exploitation forensic centers; funding for Adult Protective Services offices (discussed in the next section); training programs for law enforcement; strengthened reporting of elder abuse crimes; and surveys of care and nursing facilities (National Adult Protective Services Association 2015). The Elder Justice Act aims to protect older adults in long-term care facilities and in the community. However, even though the act has been signed into law, funding has been sporadic, limiting the law’s success in accomplishing its goals (National Adult Protective Services Association 2015). Long-term care administrators must strive to prevent elder abuse, and they must be able to recognize, record, and report any abuse that does occur. With changes in the longterm care survey process for nursing homes that are certified by Medicare and Medicaid, a new F tag, F600, ensures that residents in nursing homes have the right to be free from abuse, neglect and exploitation (LII 2016). Many communities have elder abuse multidisciplinary teams that address new cases and the issues raised by those cases. Members of these teams may include individuals from public agencies that investigate elder abuse, representatives from nonprofit organizations involved in long-term care, and private professionals such as attorneys, bankers, and real estate agents.

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Adult Protective Services (APS) A social services program administered by state and local governments that provides assistance to residents of long-term care organizations and adults with disabilities who may be victims of abuse, neglect, or exploitation. It also assists adults who are experiencing difficulties living independently in their communities.

ADULT PROTECTIVE SERVICES

Adult Protective Services (APS) is a social services program administered by state and local governments that provides assistance to residents of long-term care organizations and adults with disabilities who may be victims of abuse, neglect, or exploitation. It also assists adults who are experiencing difficulties living independently in their communities. A citizen can report concerns about an individual to a local APS office, and an APS worker will visit the person to assess their needs, determine whether they qualify for services, and develop a service plan for the individual’s safety and well-being. Adult Protective Services may also assist adults whom the courts have judged to be legally incapacitated and who require a legal guardian. Guardianship is the process of legally taking rights away from a person who is unable to make

DID YOU KNOW? The Weinberg Center

The Weinberg Center for Elder Justice, at the Hebrew Home in Riverdale, New York, is the nation’s first comprehensive program for people who have experienced elder abuse. Established in 2004 and based in an existing long-term care facility, the center offers eligible elders a full range of healthcare and supportive services, including an emergency residential shelter and a coordinated system of care. The center provides a safe harbor, emotional and psychological counseling, and legal advocacy and representation by a legal staff specializing in elder abuse cases. An interdisciplinary care plan, developed for each individual, includes plans for discharge to the person’s home, if it is safe, or a move to other appropriate housing (Smucker et al. 2021).

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guardianship The process of designating an individual to serve as a legal guardian, to make decisions for another person who can no longer make or

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decisions for themself and designating a guardian to make those decisions. Guardianship is viewed as a last resort in protecting the well-being of an incapacitated person. Guardianship may be full, meaning that all decisions are left to the guardian, or it may be limited to a specific area (e.g., financial matters only). However, even if guardianship is full, the wishes of the individual still must be respected as long as they understand their situation and are able to communicate. Guardianship can be terminated if the courts determine that the arrangement is no longer needed.

communicate decisions for themself.

A L oo k A h e a d Thirty years ago, long-term care leaders did not envision many of the legal complexities and ethical dilemmas we face today. What issues will the next 30 years hold? Disasters and pandemics will continue to affect the health care delivery system, and strategies to deal with the complex issues of care provision and resource allocation in long-term care communities will continue to evolve. Death with Dignity laws exist in several states and are being considered in others, and assisted suicide is a prominent topic nationally. Growing concerns about elder abuse have created new regulations as well as specialized training to prevent mistreatment and keep elders safe. Yet another trend involves the use of medical and recreational marijuana, which has become more broadly accepted (National Conference of State Legislatures 2022). The Society for Post-Acute and Long-Term Care Medicine (2022) issued a policy statement cautioning widespread routine use of medical marijuana in long-term care settings because of the absence of clear evidence-based guidance on appropriate use. However, some long-term care organizations have programs that permit the use of medical marijuana under state laws (Bonvissuto 2022; Rosner 2019). Long-term care is a complicated, heavily regulated, and constantly evolving field, and administrators are under considerable pressure to keep pace with the legal and ethical components of each new development.

For Discussion 1. Discuss how the concept of federalism affects the ability of states to regulate healthcare today. 2. Describe the difference between statutory law and common law.

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3. Research your state’s policy on Death with Dignity, and describe its provisions. If your state does not have a Death with Dignity law, identify the forces that prevent this type of legislation from being passed in your state. 4. Discuss how the various types of advance directives serve to inform healthcare teams about patients’ wishes. 5. Discuss how the expectations of a long-term care healthcare administrator presented in the American College of Health Care Administrators code of ethics affect professional behavior on a daily basis. 6. Discuss the role that an ethics committee in a long-term care community plays in helping families and physicians make decisions. 7. What are some common obstacles to ethical decision making for healthcare leaders? 8. What steps should be taken if an administrator suspects abuse of a resident in their long-term care community? 9. If an older adult is experiencing problems living independently in the community, or is experiencing elder abuse, what agencies could they access to obtain help, and what steps could be taken to help them? 10. What are crisis standards of care (CSC), and what challenges do administrators face in implementing CSC plans?

Case Study: Ethical Decision Making

at t h e

End

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An 87-year-old female resident has lived in your nursing home for three years. She was initially placed there by Adult Protective Services after her two daughters were determined to be stealing her medicines. She has end-stage Alzheimer’s disease, is noncommunicative, and requires total feeding assistance. A living will is on file, indicating the resident’s wish for no artificial means of prolonging her life, and she is also under the care of a local hospice agency. One of her daughters now has power of attorney. The daughter approaches you with a copy of her mother’s membership certificate in the Hemlock Society, which advocates assisted suicide. (Assisted suicide is not legal in your state.) She also brings you a book published by the Hemlock Society. She claims that total feeding assistance is an artificial means of prolonging life and violates her mother’s wishes. She asks that you stop the feeding and allow nature to take its course. The nursing staff reports that the resident eats relatively well. Her weight is stable, although she is assessed as being at high risk for pressure ulcers and weight loss. CNAs can tell you her favorite foods, based on facial expressions. She seems to especially like strawberry milkshakes; she smiles, smacks her lips, and sucks on the straw vigorously to the last drop. The nursing home’s ethics committee will be meeting with the daughters, hospice agency representatives, and the nursing home’s attorney.

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Case Study Questions 1. What competing values should be considered in making your decision? 2. What role could the long-term care ombudsman play in this situation? 3. Both the decision and the process by which the decision is made should be considered highly ethical. What is the role of the health care ethics committee in this process? 4. What preventive steps could you put into place in order to avoid similar situations in the future?

References Administration for Community Living. 2021. “Long-Term Care Ombudsman Program.” Modified November 24. www.acl.gov/programs/Protecting-Rights-and-Preventing-Abuse/ Long-Term-Care-Ombudsman-Program. American College of Health Care Administrators. 2022a. “About ACHCA.” Accessed July 5. www.achca.org/about. ______. 2022b. Code of Ethics. Accessed July 5. https://achca.memberclicks.net/assets/ code%20of%20ethics_achca%20non-member_140430.pdf. Bonvissuto, K. 2022. “‘Contradictory’ State, Federal Cannabis Laws Create Conundrum for Senior Living Operators.” McKnight’s Long-Term Care News, June 29. Centers for Disease Control and Prevention (CDC). 2021. “Standard Operating Procedure (SOP) for Triage of Suspected COVID-19 Patients in Non-US Healthcare Settings: Early Identification and Prevention of Transmission during Triage.” Updated October 18. www. cdc.gov/coronavirus/2019-ncov/hcp/non-us-settings/sop-triage-prevent-transmission. html. Death with Dignity. 2022. “In Your State.” Published June 8. https://deathwithdignity.org/ states/. Dubey, A. 2009. Association Management: A Distinct Field of Management. New Delhi, India: Global India Publications. Copying and distribution of this PDF is prohibited without written permission. For permission, please contact Copyright Clearance Center at www.copyright.com.

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Fleck, C., and T. Schmidt. 2011. “Mickey Rooney Claims Elder Abuse.” AARP Bulletin. Published March 2. www.aarp.org/relationships/caregiving/info-03-2011/mickey-rooneyclaims-elder-abuse.html (content no longer available). Guidry-Grimes, L., K. Savin, J. A. Stramondo, J. M. Reynolds, M. Tsaplina, T. B. Burke, A. Ballentyne, E. F. Kittay, D. Stahl, J. L. Scully, R. Garland-Thomas, A. Tarzian, D. Dorfman, and J. J. Fins. 2020. “Disability Rights as a Necessary Framework for Crisis Standards of Care and the Future of Health Care.” Hastings Center Report 50 (3): 28–32. www.doi. org/10.1002/hast.1128. Hick, J. L., D. Hanfling, M. K. Wynia, and A. T. Pavia. 2020. “Duty to Plan: Health Care, Crisis Standards of Care, and Novel Coronavirus SARS–COV–2. National Academy of Medicine Discussion Paper. Published March 5. https://doi.org/10.31478/202003b. Hochman, D. 2020. “The Last Days of Stan Lee.” AARP. Published October 9. http://aarp. org/entertainment/celebrities/info-2020/stan-lee-elder-abuse.html. Hunt, S. S. 2008. History and Role of the Long-Term Care Ombudsman Program. Published September. http://ltcombudsman.org/uploads/files/support/history-and-role-updated.pdf. Johnson, W., and C. Ridley. 2008. The Elements of Ethics for Professionals. London: Palgrave Macmillan Trade. Kaiser Family Foundation. 2016. “10 FAQs: Medicare’s Role in End-of-Life Care.” Published September 26. www.kff.org/medicare/fact-sheet/10-faqs-medicares-role-in-end-of-life-care/. Kusmaul, N., J. H. Cheon, and A. Gibson. 2021. “A Policy Mapping Analysis of the U.S. Congressional Approach to Medical Aid-in-Dying”. OMEGA—Journal of Death and Dying. Published September 7. https://doi.org/10.1177/00302228211043694. Legal Information Institute (LII). 2017. “42 CFR § 483.85— Compliance and Ethics Program.” Amended July 13. www.law.cornell.edu/cfr/text/42/483.85. ______. 2016. “42 CFR § 483.12—Freedom from Abuse, Neglect, and Exploitation.” Published October 4. www.law.cornell.edu/cfr/text/42/483.12.

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Manchanda, E. C., C. Couillard, and K. Sivashanker. 2020. “Inequity in Crisis Standards of Care.” New England Journal of Medicine 383 (4): e-16(1)–e-16(3). https://doi. org/10.1056/NEJMp2011359. McNamara, C. 2022. “Complete Guide to Ethics Management: An Ethics Toolkit for Managers.” Published January 18. http://managementhelp.org/businessethics/ethics-guide. htm. National Adult Protective Services Association. 2015. “Elder Justice Act Policy and Advocacy.” Accessed July 9. www.napsa-now.org/policy-advocacy/eja-implementation/ (content no longer available). National Center on Elder Abuse. 2022. "Types of Abuse." Accessed July 10. http://ncea.acl. gov/Suspect-Abuse/Abuse-Types.aspx. National Conference of State Legislatures. 2022. “State Medical Cannabis Laws.” Updated February 23. www.ncsl.org/research/health/state-medical-marijuana-laws.aspx. National Consumer Voice. 2022. “About the Ombudsman Program.” Accessed July 10. https://ltcombudsman.org/about/about-ombudsman. National Council on Aging. 2021. “Get the Facts on Elder Abuse.” Published February 23. www.ncoa.org/article/get-the-facts-on-elder-abuse. Nelson, W. A. 2005. “An Organizational Ethics Decision-Making Process.” Healthcare Executive 20 (4): 8–14. Rosner, A. 2019. “The Nursing Home with a Medical Cannabis Program The Feds Can Live With.” Forbes, February 19. www.forbes.com/sites/abbierosner/2019/02/19/the-nursing-home-with-a-medical-cannabis-program-the-feds-can-live-with/?sh=3c6af9622d40. Shafer, A. 1989. “Ethics: Challenge and Crisis; Part I: What Ethics Is Not.” Journal of the Canadian Dental Association 55 (2): 125–26.

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Smucker, S., E. Friedman, M. Cahill, and J. Taylor. 2021. “Elder Abuse: Innovative Solutions to Address a Growing Problem.” RiverSpring Living. Published May 3. www.riverspringliving.org/elder-abuse-innovative-solutions-to-address-a-growing-problem/. Social Security Administration. 2022. “Compilation of the Social Security Laws:➤ Requirements for, and Assuring Quality of Care in, Skilled Nursing Facilities.” Accessed July 5. www.socialsecurity.gov/OP_Home/ssact/title18/1819.htm. Society for Post-Acute and Long-Term Care Medicine. 2022. “Use of Medical Marijuana➤ in Nursing Homes.” Accessed July 10. https://paltc.org/?=amda-white-papers-and-➤ resolution-position-statements/use-marijuana-nursing-homes. University of Southern California Leonard Davis School of Gerontology. 2015. “What Is the Elder Justice Act?” Accessed March 19. http://gerontology.usc.edu/resources/articles/ what-is-the-elder-justice-act/ (content no longer available).

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CHAPTER 14

REGULATION OF LONG-TERM CARE Sharon Eyster, MS, LBSW, CNHA, and Mary Helen McSweeney-Feld, PhD

Learning Objectives After studying this chapter, you should be able to ➤➤ track the historical development of regulation as it applies to long-term care services; ➤➤ describe political and social influences affecting the development and implementation of long-term services and supports; ➤➤ compare the roles of public and private regulation of long-term care providers and organizations; ➤➤ identify social and demographic changes that have influenced the development and regulation of assisted living and home and community-based service options; ➤➤ understand the connection between quality and regulatory processes for long-term care providers; and ➤➤ discuss the actions and political impact of public interest groups that are focused on the quality of long-term services and supports.

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The long-term care industry in the United States began as an unorganized and unregulated effort to provide homes for individuals who were unable to care for themselves and who lacked family systems willing or able to provide needed services. Prior to the passage of the Social Security Act (SSA) in 1935, older adults without family or financial resources were relegated to state-run almshouses that provided little actual care. The SSA included Old Age Assistance (OAA) grants that, for the first time, provided elders with income that could be used to pay for care (Kaiser Family Foundation 2015). These grants were not available to individuals receiving public assistance, such as shelter in state-funded homes. Thus, a new cottage industry arose with individual homes opening their doors to older adults who now had funds to pay for services. Employment opportunities for women, expanded by World War II (1939–1945) and the robust economy that followed, changed the face of the American workforce and contributed to the decline in private homes providing shelter for the aged. Following the war, many young families moved in search of employment opportunities, leaving older Americans to age without the social supports available to prior generations. The decline in home care options fueled by changing demographics and growing numbers of women joining the workforce led to the emergence of privately and publicly owned facilities that provided institutional care. Regulation and financing of this care, where it existed, varied greatly. People living with disabilities, through most of the twentieth century, were viewed as unfit and in need of care, and they were relegated to state institutions or group homes where they would be “treated” for their conditions. This view began to change in the 1960s with the deinstitutionalization movement, which led to the creation of small congregate settings and adult homes in the community as alternatives (Anti-Defamation League 2022). Years later, Section 504 of the Rehabilitation Act of 1973, as well as a 1988 amendment to the Fair Housing Act, promoted inclusion for people with disabilities and mandated accessible design and construction. The rapidly growing population of older adults and individuals living with disabilities in the United States has posed new challenges for the delivery of high-quality long-term care services, and those challenges continue to intensify. In response, the long-term care arena has seen evolving regulations and the development of new models of community-based care.

O r i g in s

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Federal, state, and private regulation of long-term care service providers and agencies came about as an expression of societal and political expectations for care. During the twentieth century, these expectations coincided with and reflected the scientific advancements that changed medical care and the role of the physician in people’s lives. The publication of the Flexner Report in 1910, a scathing indictment of medical education in the United States, led to the American Medical Association’s control of medical education standards (Cooke et al. 2006; Starr 1982). The American College of Surgeons (ACS) Hospital Standardization

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accreditation The act of giving credit or recognition to organizations that maintain suitable standards.

The Joint Commission A private, not-for-profit organization that operates accreditation programs for a fee to subscriber healthcare organizations in the United States.

Commission on Accreditation of Rehabilitation Facilities (CARF) An international accreditation agency that offers accreditation for aging services providers as well as behavioral health, substance abuse, and other rehabilitation organizations.

licensure Permission granted by an agency of the government that provides a right to practice certain legally defined functions. In the United States, states license healthcare facilities to provide long-term care services.

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Program provided the basis for accreditation review programs of hospitals until 1952, when the Joint Commission on Accreditation of Hospitals was formed with accreditation as its central purpose. It later expanded into other healthcare settings and became known as the Joint Commission on Accreditation of Healthcare Organizations. This organization continues today as The Joint Commission and offers accreditation programs for a wide variety of healthcare organizations, including assisted living communities and nursing care centers (Joint Commission 2022b, 2022c). Other accreditation agencies for post-acute care providers include the Commission on Accreditation of Rehabilitation Facilities (CARF), an international organization founded in 1966 that accredits aging services providers such as life plan communities, assisted living facilities (ALFs), and home and community-based services organizations (CARF International 2022b, 2022c). Licensure of physicians, other healthcare professionals, and the institutions that provide acute and long-term care services established a minimum standard for delivery of health services. Financial support for long-term care evolved from self-pay and charity care to include private and public insurance programs. Many current regulations that affect long-term care services are directly linked to the financing of care by the federal and state governments. Federal government actions following World War II spurred the growth of the nursing home industry and opened the door to increasing federal involvement in regulation of care for the older adult population. The Hospital Survey and Construction Act of 1946, better known as the Hill-Burton Act (as introduced and described in chapter 1), funded construction of hospitals for a rapidly growing postwar population. This new construction resulted in the abandonment of many old hospital buildings, which were converted to nursing homes to meet the need for residential care for older adults. In 1950, amendments to the Social Security Act mandated licensure for states wishing to receive matching federal funds made available for construction of new nursing homes. The initial federal requirement for licensure standards did not identify the standards to be met and did not provide a mechanism for ensuring that states enforced the standards after they were established. However, some states did draft regulations that resulted in the closure of facilities and the replacement of substandard buildings with new construction. A series of scandals in the 1950s—ranging from deadly fires in poorly built facilities to widespread allegations of fraud, abuse, and poor care—led to changes in the regulatory climate for nursing homes. New government mandates required each state to establish an agency or authority to develop and maintain standards for operation of nursing homes. In 1965, amendments to the SSA (Title XVIII and Title XIX) established the Medicare and Medicaid programs, which provided health insurance coverage for older adults and the poor. The programs quickly became the primary payment sources for nursing home care, opening the door for further government regulation. The Moss amendments to the SSA, passed in 1967, provided a legislative basis for the standardization of nursing home regulations and the denial of Medicare and Medicaid

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funding for facilities that failed to comply (Smith and Moore 2008). Standards were established for custodial and medical care and for staffing. In addition, nursing homes were now required to meet National Fire Protection Association safety standards. However, by the time of implementation, the Moss amendments had undergone significant changes, and they were less effective than originally intended in bringing changes to nursing home practices. Recall from chapter 2 that the Omnibus Budget Reconciliation Act (OBRA) of 1987 was the first legislation to effectively impose significant reforms on the nursing home industry. The act mandated the provision of certain services to ensure that residents achieve and maintain the highest practicable level of well-being. It also established a patient bill of rights and an outcome-focused, resident-oriented survey process. This process replaced an earlier effort that focused on facilities and processes required to provide care rather than on the outcomes of the care delivered. As the nursing home industry moved toward greater regulation, the disabilities rights movement of the 1970s led to the formation of grassroots organizations run by individuals with disabilities to assist other individuals with disabilities. Assistance provided through these groups—called Centers for Independent Living (described in chapter 5)—could include information about housing options, transportation, and other supportive services. Around the same time, a number of legislative initiatives called attention to the importance of integration and inclusion in housing and other community services for people living with disabilities. Such initiatives included the Rehabilitation Act of 1973, the implementation of Section 504 of the act, the 1988 amendment of the Fair Housing Act, the Americans with Disabilities Act of 1990, the IDEA Act of 1990, as well as the Supreme Court 1999 Olmstead and 2013 Jimmo decisions (refer back to chapter 2 for more details on these developments in the history of long-term services and supports).

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Moss amendments Amendments to the Social Security Act that provided a legislative basis for standardization of nursing home regulations and denial of Medicare and Medicaid funding for organizations that fail to conform to them.

L ong -T erm

State governments today license long-term care facilities and providers under their right to police activities to ensure the health and safety of their residents. But whereas the states regulate nursing home activity by virtue of their police power, the federal government regulates through its financing authority. Significant federal financing of nursing home care and related home-based services came about with the establishment of Medicare and Medicaid in the 1960s. Facilities and providers wishing to participate in these programs are required to meet the Conditions of Participation set by federal law. (Conditions of Participation were discussed in greater detail in chapter 2.) In 2016, a significant change in the Medicare Conditions of Participation was implemented for skilled nursing facilities that participate in the program, and in 2018, a similar change was enacted for participating home health agencies.

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Enrollment in Medicare grew from 19 million people in 1966 to nearly 64 million in 2021, and enrollment in Medicaid increased from 10 million in 1967 to more than 76 million in 2021, according to the Centers for Medicare & Medicaid Services (CMS 2021). Medicare and Medicaid program funds pay for a majority of all nursing home care in the United States. With hundreds of millions of federal dollars allocated on an annual basis, it is not surprising that the federal government has promulgated rules and regulations affecting every aspect of nursing home care. At the same time, private regulation has arisen from the efforts of individuals and groups to establish standards and measures for the provision of high-quality services. The Joint Commission can accord hospitals deemed status under the US government, meaning that the hospitals have met the Conditions of Participation for Medicare and Medicaid and do not have to undergo a state and federal survey. Within long-term care, home health and hospice agencies may receive deemed status through The Joint Commission (2022a). However, Joint Commission–accredited nursing homes are not accorded the same status and must submit to a state and federal survey annually to be eligible for federal funds. Fewer than 1,000 of the 15,600 nursing homes in the United States in 2016 were accredited by The Joint Commission (Centers for Disease Control and Prevention 2022; Joint Commission 2016). Nursing Homes

Today, nursing homes are among the most highly regulated healthcare facilities in the United States, with oversight both by the federal government through CMS and by the individual state licensing agencies. The federal standards are outlined in the CMS State Operations Manual and include requirements for sufficient staffing to ensure quality of care. The state licensing agencies provide the survey teams that inspect facilities to determine compliance with both state and federal regulations. Decisions about whether care delivered at a facility meets the threshold for compliance with federal regulations are made at the state level. This arrangement often results in differences in citations from one state to another. Establishment of minimum quality standards at the federal level has been shown to improve care in areas targeted in deficiency citations. Although state licensure standards for nursing homes vary, they generally cover the same areas. New facilities must be licensed, and the state licensure inspection process begins before construction. Prior to admitting patients, a nursing home must demonstrate that it meets or has the ability to meet all the standards required for an operational facility. After the facility opens, it must continue to demonstrate compliance with state standards. A state survey team surveys licensed facilities annually. Survey team members include nurses, social workers, pharmacists, dietitians, healthcare administrators, fire and safety professionals, and other allied health practitioners. Nursing homes are licensed as either skilled nursing facilities (SNFs) or intermediate care facilities (ICFs). SNFs provide 24-hour nursing care for residents who require medical, nursing, rehabilitative, and nutrition services; activity programs; and medication Copying and distribution of this PDF is prohibited without written permission. For permission, please contact Copyright Clearance Center at www.copyright.com.

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management. To participate in Medicare, a nursing home must be licensed as an SNF. ICFs provide 24-hour residential care but are only required to provide eight hours of nursing supervision per day. Residents in ICFs are generally ambulatory, require less assistance with daily activities, and need little nursing care. Both SNFs and ICFs are eligible for certification as Medicaid providers. Although state standards vary, federal legislation under the SSA mandates minimum standards that all facilities, regardless of location, must meet to participate in Medicare and Medicaid. These standards are found in the Code of Federal Regulations (CFR). The federal government contracts with the survey agency of each state to perform initial surveys and periodic resurveys of facilities to ensure compliance with the federal standards. The federal surveys take place concurrently, in most cases, with the state licensure surveys during a 9- to 15-month window. The surveys are unannounced. During a nursing home’s survey window, a survey team can begin a survey on any day of the week, including weekends, and at any time of the day or night. The scope and specificity of the state and federal regulations, along with the fact that the nursing home staff must be prepared for the survey at any time, make this process stressful for staff and administrators. In addition to the mandated licensing and certification surveys, some organizations may choose to pursue accreditation by The Joint Commission or CARF, as described in the accompanying Critical Concept sidebar “Post–Acute Care Provider Accreditation,” in an effort to improve their performance and quality. Licensure and certification are enforcement processes that measure performance against minimum state and federal standards. Inadequate performance can result in deficiency citations at the state and federal level. Subsequent to the enactment of OBRA 1987, federal deficiency citations can include a civil money penalty. The same legislation enabled other intermediate sanctions, such as the denial of payment for current residents or new admissions and the appointment of temporary managers where needed to ensure resident safety and continued facility operation (Harrington et al. 2008). The US Congress passed the first federal nursing home standards in 1967 and updated them in 1980, 1987, 1990, and 2016. Key elements of the regulations include (1) an emphasis on a resident’s quality of life, (2) expectations for activities of daily living (ADLs) that residents can perform (absent medical reasons that would prevent such activities), (3) individualized care planning and a time frame for completion, (4) the right to return to the nursing home after a hospital stay, (5) the initiation of a family council, (6) the right to have a safely managed resident bank fund, (7) the right to be free of physical and chemical restraint, and (8) uniform standards for homes accepting Medicare and Medicaid funds.

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certification A process of external review or assessment to ensure qualification to perform a job or task. Long-term care facilities in the United States are certified to provide care by the federal Medicare and Medicaid programs.

Code of Federal Regulations (CFR) A collection of federal rules and regulations in the United States. Title 42 sets standards for participation in the Medicare and Medicaid programs that must be met by all facilities.

civil money penalty A punitive fine imposed by a civil court on an entity that has profited from illegal or unethical activity.

OBRA 1987 Regulations

Early regulations established a process-focused survey that asked nursing homes to demonstrate that the necessary processes and procedures were in place to care for facility residents. Copying and distribution of this PDF is prohibited without written permission. For permission, please contact Copyright Clearance Center at www.copyright.com.

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CRITICAL CONCEPT Post-Acute Care Provider Accreditation

All nursing homes must undergo state licensing surveys, and those seeking participation in the Medicare and Medicaid programs must submit to federal certification surveys. However, accreditation is a voluntary process offered through such organizations as The Joint Commission and CARF. In contrast to the licensure and certification processes, the focus of accreditation is performance improvement. The cost of accreditation is borne by the organization and is seen as an investment that can help improve organizational performance, demonstrate facility achievement in the areas of quality and safety, and help market facility services. The accreditation survey is based on an on-site evaluation of the systems and processes in place for the delivery of care and the maintenance of the facility and environment. The surveyors evaluate the facility using standards developed in consultation with industry providers, residents, families, long-term care experts, and other relevant stakeholders. The standards cover residents’ rights, ethical treatment, medical and nursing care, infection control, information management, human resources, environmental services, and overall organizational performance. A study by Wagner, McDonald, and Castle (2012) showed that nursing homes participating in voluntary Joint Commission accreditation had fewer deficiency citations compared to other facilities prior to accreditation, improved their quality after accreditation, and maintained their lower deficiency ratings over time. The public can access safety and quality information about Joint Commission– accredited long-term care organizations, including detailed performance data and comparisons with other institutions, at www.qualitycheck.org.

With passage of OBRA 1987, the focus shifted to quality of life. The resident became the focus of the survey, and states were charged with establishing effective monitoring and enforcement mechanisms to ensure that state licensure requirements and federal standards were met. OBRA 1987 also mandated staffing levels and education programs for caregivers. These regulatory changes held nursing homes accountable for the outcomes of the care they delivered. The resident’s right to safe and competent care became the core issue of the survey process (Walshe and Harrington 2002). Under the OBRA 1987 standards, the survey team prepares for each survey by reviewing the facility’s prior survey report, complaint investigations, quality indicators, and other documents related to the operation of the facility. At the start of the survey, the survey team enters the facility and alerts the administrator to the purpose of the visit. In most cases, Copying and distribution of this PDF is prohibited without written permission. For permission, please contact Copyright Clearance Center at www.copyright.com.

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the team meets briefly with administrative leadership before beginning the observations, record examinations, and interviews that make up the majority of the process. Because the day and time of the survey have not been announced in advance, the team should be able to view the normal daily operation of the facility. The observations portion of the survey attempts to construct an understanding of the quality of care delivered at the facility. It includes observations of the delivery of clinical care, such as medication administration, dressing changes, and therapy sessions, as well as interactions between staff and residents. The state survey team evaluates all facets of the nursing home’s operation. It inspects the physical plant, conducts fire and safety checks, reviews disaster and evacuation plans, addresses infection control issues, and reviews the organization’s personnel and financial records. The facility must produce evidence of adherence to local ordinances and regulations and the currency of all required operational and staff licenses. Some states require ongoing staff training that must be documented. Although much of the surveyors’ activity is focused on federal standards that overlap with state requirements, each state has specific regulations that surveyors must also address. All state surveyors attend mandatory training conducted by state and federal agencies in preparation for the survey process. Despite this training, concerns about the reliability of survey results persist, voiced by providers, policymakers, facility residents and their families, and surveyors themselves. A report published by the Office of Inspector General found that more than half the states failed to meet timeliness requirements for conducting nursing home surveys from 2015 to 2018, a failure frequently attributed to staffing shortages. In response, recommendations were made to increase CMS oversight for the state survey process (Grimm 2022).

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Minimum Data Set (MDS) A standardized screening, assessment, and data collection tool for determining the level of care needed and the payment for services delivered in

The Quality Indicator Survey

A long history of complaints led to efforts by CMS to revise the survey process. The 2007 introduction of the Quality Indicator Survey (QIS) initiated significant changes to the nursing home regulatory process (Lin and Kramer 2013). Facility data (called CASPER data) is extracted from the Minimum Data Set (MDS) assessment tool for residents in skilled nursing facilities, as well as a CMS administrative database called the Quality Improvement Evaluation System, which replaced the previous Online Survey Certification and Reporting system in 2012. (See the accompanying “Did You Know?” sidebar for more information on the MDS.) Since 2016, the content of the QIS has been integrated into the new Federal Long-Term Care Survey for nursing homes that participate in Medicare and Medicaid.

nursing homes and hospitals.

Quality Improvement Evaluation System An administrative database—containing information known as CASPER data— maintained by the Centers for Medicare & Medicaid Services.

Assisted Living Communities

In the United States, assisted living was introduced in the 1970s and developed as an alternative to more expensive nursing home care for individuals who needed supervision and assistance with ADLs but did not necessarily require skilled nursing services. (Refer back to Copying and distribution of this PDF is prohibited without written permission. For permission, please contact Copyright Clearance Center at www.copyright.com.

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the chapter 4 section “History of Assisted Living” for a detailed description of ALF development.) The following federal laws affect assisted living, because they affect all employers: the Americans with Disabilities Act, the Civil Rights Act of The first MDS survey tool began in 1988 as an outgrowth of 1991, the Rehabilitation Act of 1973, the Family the recommendations in OBRA 1987. Its initial purpose was and Medical Leave Act, the Fair Labor Standards to help in the formulation of care plans, but people soon recAct, and the Occupational Safety and Health Act. ognized that the information collected could also be used for In most cases, corresponding state laws address regulatory and reimbursement purposes (Rahman and Applemany of the same issues. However, because sigbaum 2009). The tool has undergone many changes over the nificant federal funding has not been allocated for years as regulators have moved to include resident interviews assisted living, federal oversight specific to this area and quality of care assessments, culminating in the release of is minimal, and state licensing requirements vary. MDS 3.0 version in October 2010 (Saliba et al. 2012). Annual State regulations can affect every aspect of assisted revisions to the MDS continue, with new resident assessment living situations, from services offered to participasections mandated by the Improving Medicare Post-Acute tion in Medicaid waiver programs. For example, Care Transformation (IMPACT) Act of 2014. Effective October regulations in a few states do not allow individuals 2016, a new Section GG (Functional Abilities and Goals) has to to reside in ALFs if they meet the criteria for be completed with each initial MDS assessment. This change ­admission to an SNF. Individuals in these states helps make data transferable between care settings, with cannot qualify for Medicaid home and communitythe ultimate goal of improving outcomes for Medicare benbased services (HCBS) waivers, because waiver eficiaries. MDS data are used to determine new value-based applicants must be nursing home eligible. purchasing reimbursement for nursing home services and are Assisted living providers across the United included in the Nursing Home Compare database, affecting States generally agree that any level of regulation quality indicators as well as nursing home star ratings from needs to be limited to allow flexibility to address CMS (2022). the changing service needs of residents as they age. Proponents of increased regulation, on the other hand, cite concerns about poor care and exploitation of older adults. Because older adults and their families pay for the majority of assisted living services, they have a powerful voice as the industry develops various residential settings and services. DID YOU KNOW? Changes to the Minimum Data Set

Life Plan Communities

A life plan community (LPC), also called a continuing care retirement community (CCRC), is an organization that offers a variety of services, ranging from housing to healthcare, to serve the changing needs of residents as they age. Assisted living, skilled nursing, and independent living facilities, along with their respective nursing and service components, are all part of one community. Residents contract with the LPC for a continuum of services that allow the resident to age in place. This contractual agreement, which is unique to LPCs,

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guarantees that the resident receives services on the basis of individual need as they age. LPCs were described in detail in chapter 4. The same licensing laws that cover ALFs and SNFs also apply to assisted living and skilled nursing beds located in LPCs. In addition, 38 states regulate continuing care contracts. These regulations resemble insurance regulations in that they address the financial arrangements between the resident and the LPC and require financial disclosure by the LPC. In many cases, the regulatory agency assigned oversight of LPC contracts is the state department of insurance (Government Accountability Office 2010). LPC contract regulation primarily protects the residents’ rights related to prepaid entrance fees and refund policies and ensures that the facility uses standard accounting practices for required reporting of facility operating and investment capital. Regulations may require that some or all of the entrance fees be placed in escrow to ensure that a refund will be available if one is due under the provisions of the contract. Some states also require LPCs to maintain a cash reserve to help protect against a loss of services during times of financial difficulty (Bogutz et al. 2005). The inconsistency of states’ approaches to LPC regulation limits people’s ability to assess the quality of services in an individual community and to compare quality between communities. The formation in 1985 of the Continuing Care Accreditation Commission was an effort to address the questions of financial stability and quality of care offered by LPCs, and CARF accreditation assumed these responsibilities in 1996. Since that time, many LPCs and other aging services networks have been accredited under CARF standards through submission of a comprehensive self-study and an on-site survey process. The process is similar to The Joint Commission process and includes observation, record reviews, and interviews with administrators, staff, residents, and other stakeholders. Participating LPCs can market their accreditation as evidence of quality and commitment to performance improvement, as well as evidence of creditworthiness to lenders seeking to do business with long-term care providers. Of the approximately 2,000 LPCs in the United States, 115 are accredited by CARF (CARF International 2022a). Exhibit 14.1 shows the states with the largest numbers of accredited CCRCs, as CARF calls them. The LeadingAge Ziegler 200 (LZ 200) lists the largest not-for-profit systems providing aging services through senior living in the United States, by order of their total owned market-rate units. A total of 177 communities within the LZ 200 are accredited through CARF; 27 have sought accreditation through the Joint Commission, and an additional 31 are accredited through other organizations (Leading Age and Ziegler 2021). H o u s i n g F o r P e opl e L i v i n g

w i th

Disabilities

People living with disabilities in the United States face a number of obstacles to supportive housing in their communities. Gaps in affordable housing, the high cost of making homes accessible, and persistent housing discrimination—despite fair housing laws aiming to

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EXHIBIT 14.1 US States with Highest Number of Accredited Continuing Care Retirement Communities

Virginia

15

Pennsylvania

14

North Carolina

13

Illinois

7

Massachusetts

7

Ohio

6

Connecticut

5

California

5

New Jersey

5

Florida

4

Maryland

4

Source: Data from CARF International (2022a).

prevent such discrimination—contribute to a crisis for many people. Key efforts through the US Department of Housing and Urban Development to assist individuals living with disabilities include the Section 8 Housing Choice voucher program (also used by older adults with limited income) and the Section 811 Supportive Housing for Persons with Disabilities program. Section 811 housing is typically integrated into larger apartment buildings and linked with voluntary supports and services (The Arc 2022). Public housing programs and efforts by the National Housing Trust encourage the development and rehabilitation of supportive housing for people with low incomes. For information about other housing options offered through some twenty-first century initiatives, refer back to the chapter 5 section “The Evolution of Services for People Living with Disabilities.” Home

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C o m m u n i t y -B a s e d S e r v i c e s

Federal- and state-sponsored programs provide home and community-based services for adults and their caregivers. These HCBS programs also receive private funding. The Administration on Aging (AoA) oversees the promotion and development of coordinated home and community-based long-term care services at the federal level. Many HCBS programs arise from the Older Americans Act (OAA), which authorizes and provides funding for programs that deliver social and nutrition services to older adults through the National Aging Network (as described in detail in chapter 5). Programs funded under the OAA include multipurpose senior centers, nutrition centers (which provide congregate meals), adult day care, home-delivered meals, respite care and support programs for volunteer Copying and distribution of this PDF is prohibited without written permission. For permission, please contact Copyright Clearance Center at www.copyright.com.

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caregivers, health and wellness programs, legal services, abuse prevention services, and other offerings. The integration of the AoA under the Administration for Community Living in 2012 expanded the scope of Aging Network programs through the formation of Aging and Disability Resource Centers, which provide services for older adults and individuals living with disabilities. Additional legislation that has authorized funding for programs and services for older adults includes Section 398 of the Public Health Service Act, which established Alzheimer’s disease demonstration grants to states. The AoA administers two other acts, the Health Insurance Portability and Accountability Act, which funds fraud and abuse control efforts, and Title XXIX of the Public Health Service Act, which authorizes funding for respite care programs. These programs undergo regular, planned evaluations to assess their effectiveness, efficiency, and cost related to the services they provide. The evaluation efforts provide current, relevant data to policymaking bodies as they allocate their limited resources to care for a rapidly growing older adult population. A cco u n ta b i l i t y A n d Q u a l i t y

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The demand for accountability across the spectrum of long-term care has led to greater availability of information about the scope and quality of services at the federal, state, and institutional levels. The reporting of quality data mandated by CMS provides information on quality outcomes for a wide range of health care providers participating in Medicare and Medicaid (CMS 2015). CMS’s web-based reporting program, Care Compare, provides user-friendly access to data on health care providers including patient satisfaction ratings, quality ratings and measures, health outcomes, and staffing, as well as results of fire safety inspections (Medicare.gov 2022). The intent is to provide the public with information that can aid in making decisions related to nursing home placement. Reporting began in 2002 in response to a broad quality initiative that also mandated reporting of quality indicators for hospitals, dialysis facilities, and home health agencies through similar websites. At the same time, CMS began contracting with quality improvement organizations (QIOs) in each state to work with hospitals, nursing homes, home health agencies, and other health service providers to improve the quality of care for Medicare beneficiaries and to protect the Medicare Trust Fund by ensuring accurate service reimbursements. In nursing homes, much of the QIO activity focuses on work with physicians and nursing staff, and it includes consultative and educational components. QIOs aim to bring about improvements in quality throughout the spectrum of care. Although some questions have arisen about the impact of mandatory reporting and QIO efforts, early research suggests some improvement in such measures as use of restraints, pain management, and prevalence of pressure ulcers (Arling 2007; Rollow et al. 2006; Shih, Dewar, and Hartman 2007). Individual states and not-for-profit organizations have taken a variety of approaches to reporting care outcomes from long-term care providers. The intent is to help people

quality improvement organizations (QIOs) Private, not-forprofit organizations staffed by trained professionals who review medical care given to people with Medicare and help beneficiaries with complaints.

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Long-Term Services and Supports State Scorecard A scorecard for states in the area of longterm services and supports for older adults, people with physical disabilities, and family caregivers to drive progress for improvement in services.

ombudsman program A program responsible for addressing issues of resident rights and complaints from nursing home and assisted living residents and interested parties.

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select high-quality health care providers. AARP, the Commonwealth Fund, and the SCAN Foundation sponsor the Long-Term Services and Supports State Scorecard, which provides information on long-term services and supports for older adults, people with physical disabilities, and family caregivers. It measures 26 indicators across five domains: access and affordability, choice of setting and provider, quality of life and quality of care, support for family caregivers, and effective transitions (AARP, Commonwealth Fund, and SCAN Foundation 2022). Another response to concerns about quality of care is the Long-Term Care Ombudsman Program (LTCOP), established in 1978 through amendments to the OAA (and described in detail in chapter 13). All 50 states now have an ombudsman program that is responsible for addressing issues of resident rights and complaints from SNF and ALF residents and interested parties. Responsibilities of the ombudsman role include advocacy for policy and regulatory change and provision of information and education for clients and their families. The programs are funded by federal and state monies and are operated by a variety of state agencies and nonprofit organizations. The mandated investigatory and advocacy roles of ombudsman programs are carried out by individuals in paid and volunteer positions (Estes et al. 2004; Nelson et al. 2004). The Older Americans Act Reauthorization Act of 2016 expanded the scope of long-term care ombudsman activities to include residents of all ages in long-term care facilities. This change is consistent with the Administration for Community Living’s focus on developing services for older adults as well as younger adults with long-term care service needs. The 2020 reauthorization of the OAA helped build capacity in the aging services network and extend funding to family caregivers. Researchers have investigated the effectiveness of ombudsman programs at the state and national levels. Estes and colleagues (2004) looked at factors that influenced the perceived effectiveness of ombudsmen in implementing positive change. The study found that two factors negatively affect LTCOP effectiveness: limitations on funding and the placement of ombudsmen in agencies that also regulate nursing homes or make Medicaid payment decisions. To address these issues, national training standards for long-term care ombudsmen were developed by the Office of the LTCOP in 2019 to fulfill the requirements for ombudsman training under the Older Americans Act, and an initial certification training curriculum was introduced in 2022 for all state ombudsman offices (National Consumer Voice for Quality Long-Term Care 2022b). Public interest in safety and quality of life has intensified as older adults and people with disabilities themselves, who make up an increasingly large proportion of the population, have gained a more prominent voice in the national discourse about long-term care. Many older adults serve as ombudsmen themselves. Today’s generation of long-term care consumers is better educated and more affluent than preceding generations. They exert influence through their purchasing power and political activism as they seek to affect the quality, availability, and affordability of health and residential services.

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Ombudsman programs developed at the same time as a growing number of private and consumer-based health quality initiatives. Many of these programs addressed specific health issues or conditions; few focused on specific healthcare settings. One exception is the National Consumer Voice for Quality Long-Term Care, formerly known as the National Citizens’ Coalition for Nursing Home Reform. This organization and its many constituent citizens’ advocacy groups have played a significant role in informing the public of concerns related to nursing homes and influencing the passage of legislation aiming to improve long-term care (National Consumer Voice for Quality Long-Term Care 2022a; Phillips et al. 2008). The National Nursing Home Quality Improvement (NNHQI) Campaign (formerly known as the Advancing Excellence in America’s Nursing Homes campaign) is an initiative backed by a public/private coalition that includes providers, government agencies, facility clients, health professionals, private foundations, and other quality-of-care advocates. The coalition aims to increase the quality of nursing home care through a person-centered approach by challenging facilities to address major problem areas, including pressure ulcers, the inappropriate use of physical restraints, and pain management for long-term and shortterm residents. Other goals include identifying specific targets for quality improvement, assessing resident satisfaction, ensuring consistency of staff assignment, and improving staff retention (Nursing Home Help 2020; Quality Improvement Organizations 2022). The nursing home industry is accountable for the care provided to its residents, and pressure brought by regulation and private oversight has affected care and care delivery models. New initiatives are designed to improve the quality of life for residents, as well as the working conditions for staff, by changing the nursing home setting and culture. These efforts, which seek to move nursing home care from a medical model to a resident-centered model have been formally embedded in the Federal Long-Term Care survey of skilled nursing homes, and greater attention has been paid to development of quality-of-life measures and the quality of care provided.

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National Nursing Home Quality Improvement (NNHQI) Campaign A coalition of longterm care providers, government agencies, consumers, health professionals, private foundations, and other advocates that aims to improve quality for nursing home residents and staff through a personcentered quality of life as a result of a stable and empowered workforce, dedicated to improving clinical and organizational outcomes and engaging in open communication and transparency.

A L oo k A h e a d Early regulation of healthcare services came about as individuals and communities sought to address issues involving safety, physician competence, and care in hospitals. Initial regulatory activity included development of standards by professional organizations, state licensure laws, and private accreditation efforts. When the Medicare and Medicaid programs were launched in 1965 and the US government began financing long-term care services, federal standards were developed for covered services, including home care and institutional care. Congress passed the first set of nursing home standards in 1967. Around the same time, the disabilities rights movement led to the passage of legislation that defined human and civil rights for people living with disabilities, and community-based networks began promoting

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integration and inclusion of people living with disabilities in housing and other areas. Since that time, the number and complexity of regulations addressing long-term care services have grown, as has oversight activity by state, federal, and private regulators. Care has improved markedly in long-term residential communities, and efforts to change the culture in nursing homes and to shift long-term services to more community-based models since the passage of the Affordable Care Act show promise. Additional programs have improved supportive housing options for people living with disabilities. However, problems still exist. Funding for key programs is limited and likely insufficient for meeting the future demands of growing numbers of adults with disabilities seeking to remain in their communities. In addition, oversight of home and community-based care paid for by public funds will be difficult, and some observers will consider such oversight intrusive. As the government extends payment to new models of care, the effort will be accompanied by regulatory processes that attempt to address provider accountability and ensure quality services. A large and politically active adult population can be expected to weigh in on the development and delivery of these services, both individually and through local, regional, and national consumer interest groups.

For Discussion 1. Each state has health facility surveyors who are trained in state and federal survey protocols, regulations, and procedures. What are the qualifications, position descriptions, and job responsibilities for individuals serving in this role in your state? 2. State requirements for the education and certification or licensure of administrators of ALFs and SNFs vary greatly. Select three states, and create a chart comparing the requirements for each. 3. Laws regulating ALFs and SNFs vary by state. However, most states’ regulations address emergency/disaster preparedness, fire safety, staff training, medication management, resident privacy, and background checks. What do the regulations in your state say about these issues? Where do you see the greatest differences in regulations? Why do you think that is? 4. What was the significance of the passage of the Omnibus Budget Reconciliation Act of 1987? 5. What are the differences in the primary mandates assigned to state and federal health facility surveyors and state ombudsmen? 6. What public interest groups, aging services, or professional organizations have the greatest influence on political decisions related to long-term care? Why? 7. Research the quality of long-term care services in your community through Medicare’s Care Compare website, and report on two quality of care indicators as well as customer satisfaction data. What have you learned about long-term care services and supports where you live, and why is this important for you and your family?

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8. What types of accreditation processes can long-term care providers participate in, and how do they help ensure quality of care for long-term services and supports? 9. Research the impact that the 2016 changes in the Federal Long-Term Care survey for nursing homes process have had on facilities undergoing this more focused review. Have nursing homes changed the way they prepare for the survey? 10. What legislative initiatives helped the integration and inclusion of individuals living with disabilities in their communities? What types of programs are available that address concerns about accessible and supportive housing needs?

Case Study: The Joint Commission

and

A cc r e d i tat i o n

As the new administrator of Golden Oaks Nursing Home, you have been approached by the facility owner and asked to prepare a report about whether the facility should seek accreditation by The Joint Commission. Golden Oaks is a 120-bed skilled nursing facility located in a midsize city. It has four competitors within a five-mile radius. Three of those competitors have been in business for less than five years, and they have new buildings with upgraded furnishings. Your building is 40 years old and was last renovated ten years ago; it is in good repair but a little dated in appearance. You are hoping to convince the owner to spend money on cosmetic fixes that would be helpful in marketing the facility’s services. You also have some concerns about care issues, because resident and family complaints have risen over the last year. The number of resident falls is stable but remains above the state average, and your infection rates are up slightly from the prior year. Additionally, a number of your more competent nursing staff members have been successfully recruited by your competitors. As you consider your employer’s request, you are aware that accreditation is expensive and will require the diversion of staff time to prepare the application and to address concerns raised in the accreditation process.

Case Study Questions 1. What is the perceived or real value of Joint Commission accreditation? 2. Identify the pros and cons of accreditation as you frame your argument that the facility should or should not commit the time and expense required for accreditation. 3. Identify alternative programs or initiatives that could help you address care issues that might negatively affect your annual state and federal survey. What are the similarities and differences between the goals of Joint Commission accreditation and those of the quality improvement initiatives you identified?

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References AARP, Commonwealth Fund, and SCAN Foundation. 2022. “Long-Term Services & Supports State Scorecard.” Accessed August 5. https://longtermscorecard.org. Anti-Defamation League (ADL). 2022. “A Brief History of the Disability Rights➤ Movement.” Published May 3. www.adl.org/resources/backgrounder/brief-history-➤ disability-rights-movement. Arc, The. 2022. “Key Federal Housing Initiatives.” Accessed July 7. www.thearc.org/ policy-advocacy/housing. Arling, G. 2007. “Improving Quality Assessment Through Multilevel Modeling: The Case of Nursing Home Compare.” Health Services Research 42 (3): 1177–99. Bogutz, A. D., R. N. Brown, J. M. Krauskopf, and K. L. Tokarz. 2005. Elder Law Advocacy for the Aging, 2nd ed. Eagan, MN: West Publishing. CARF International. 2022a. “List of CARF-Accredited Continuing Care Retirement Communities.” Accessed May 24. www.carf.org/ccrcListing.aspx. ______. 2022b. “Provider List.” “The Public Says: Accreditation Matters!” Accessed May 24. www.carf.org/consumer.aspx?Content=content/about/providerlist.htm. ______. 2022c. “Who We Are.” Accessed May 24. www.carf.org/About/WhoWeAre/. Centers for Disease Control and Prevention (CDC). 2022. “Nursing Home Care.” Reviewed January 21. www.cdc.gov/nchs/fastats/nursing-home-care.htm. Centers for Medicare & Medicaid Services (CMS). 2022. “Nursing Home Quality Initiative.”➤ Modified June 14. www.cms.gov/Medicare/Quality-Initiatives-Patient-Assessment-➤ Instruments/NursingHomeQualityInits. ______. 2021. “CMS Releases Latest Enrollment Figures for Medicare, Medicaid, and Children’s Health Insurance Program (CHIP).” News release, December 21. www.cms.gov/

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newsroom/news-alert/cms-releases-latest-enrollment-figures-medicare-medicaid-andchildrens-health-insurance-program-chip. ______. 2015. Nursing Home Data Compendium 2015 Edition. Accessed May 10, 2016. www. cms.gov/Medicare/Provider-Enrollment-and-Certification/:CertificationandCompliance/ :Downloads/nursinghomedatacompendium_508-2015.pdf (content no longer available). Cooke, M., D. M. Irby, W. Sullivan, and K. M. Ludmerer. 2006. “American Medical Education 100 Years After the Flexner Report.” New England Journal of Medicine 355 (13): 1339–44. Estes, C. L., D. M. Zulman, S. C. Goldberg, and D. D. Ogawa. 2004. “State Long-Term Care Ombudsman Programs: Factors Associated with Perceived Effectiveness.” Gerontologist 44 (1): 104–15. Government Accountability Office. 2010. Older Americans: Continuing Care Retirement Communities Can Provide Benefits, but Not Without Some Risk. Report no. GAO-10-611. Published June. www.gao.gov/new.items/d10611.pdf. Grimm, C. A. 2022. CMS Should Take Further Action to Address States with Poor Performance in Conducting Nursing Home Surveys. Report no. OEI-06-19-00460, Office of Inspector General, US Health and Human Services. Published January. https://oig.hhs. gov/oei/reports/OEI-06-19-00460.pdf. Harrington, C., T. Tsoukalas, C. Rudder, R. J. Mollot, and H. Carrillo. 2008. “Variation in the Use of Federal and State Civil Money Penalties for Nursing Homes.” Gerontologist 48 (5): 679–91. Joint Commission. 2022a. “Federal Deemed Status.” Accessed June 7. www.jointcommission. org/resources/news-and-multimedia/fact-sheets/facts-about-federal-deemed-status/. ______. 2022b. “Now Available: Accreditation for Assisted Living Communities.” Accessed July 7. www.jointcommission.org/accreditation-and-certification/health-care-settings/ assisted-living-community/. ______. 2022c. “Nursing Care Center Certifications.” Accessed June 7. www.jointcommission.org/accreditation-and-certification/certification/certifications-by-setting/ nursing-care-center-certifications/. Copying and distribution of this PDF is prohibited without written permission. For permission, please contact Copyright Clearance Center at www.copyright.com.

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______. 2016. “Facts About Long Term Care Accreditation.” Accessed May 9. www.jointcommission.org/assets/1/18/long_term_care_accreditation1.pdf (content no longer available). Kaiser Family Foundation. 2015. Long-Term Care in the United States: A Timeline. Fact Sheet. Published August. www.kff.org/wp-content/uploads/2015/08/8773-long-termcare-in-the-united-states-a-timeline1.pdf. LeadingAge and Ziegler. 2021. LZ 200: 2021, 18th Anniversary Edition. Published October. https://leadingage.org/sites/default/files/LeadingAge_Ziegler_200_2021_FINAL.pdf. Lin, M. K., and A. M. Kramer. 2013. “The Quality Indicator Survey: Background, Implementation, and Widespread Change.” Journal of Aging & Social Policy 25 (1): 10–29. Medicare.gov. 2022. “Find & Compare Nursing Homes, Hospitals & Other Providers Near You.” Accessed June 7. www.medicare.gov/care-compare/. National Consumer Voice for Quality Long-Term Care. 2022a. “About the Consumer Voice.” Accessed July 7. http://theconsumervoice.org/about. ______. 2022b. “National Long-Term Care Ombudsman Resource Center: Initial Certification Training Curriculum for Long-Term Care Ombudsman Programs.” Published January. https://ltcombudsman.org/omb_support/training/norc-curriculum. Nelson, H. W., K. Hooker, K. DeHart, J. A. Edwards, and K. Lanning. 2004. “Factors Important to Success in the Volunteer Long-Term Care Ombudsman Role.” Gerontologist 44 (1): 116–20. Nursing Home Help. 2020. “National Nursing Home Quality Improvement (NNHQI) Campaign (Previously Advancing Excellence).” Updated March 2. https://nursinghomehelp. org/educational/advancing-excellence/. Phillips, C. D., A.-M. Kimbell, C. Hawes, J. Wells, J. Badalamenti, and M. J. Koren. 2008. “It’s a Family Affair: Consumer Advocacy for Nursing Home Residents in the United States.” Ageing & Society 28 (1): 67–84.

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Quality Improvement Organizations. 2022. “Nursing Home Resources.” Accessed July 10. https://qioprogram.org/nursing-home-resources. Rahman, A. N., and R. A. Applebaum. 2009. “The Nursing Home Minimum Data Set Assessment Instrument: Manifest Functions and Unintended Consequences—Past, Present, and Future.” Gerontologist 49 (6): 727–35. Rollow, W., T. R. Lied, P. McGann, J. Poyer, L. LaVoie, R. Kambic, D. W. Bratzler, A. Ma, E. D. Huff, and L. D. Ramunno. 2006. “Assessment of the Medicare Quality Improvement Organization Program.” Annals of Internal Medicine 145 (5): 342–53. Saliba, D., M. Jones, J. Streim, J. Ouslander, D. Berlowitz, and J. Buchanan. 2012. “Overview of Significant Changes in the Minimum Data Set for Nursing Homes Version 3.0.” Journal of the American Medical Directors Association 13 (7): 595–601. Shih, A., D. M. Dewar, and T. Hartman. 2007. “Medicare’s Quality Improvement Organization Program Value in Nursing Homes.” Health Care Financing Review 28 (3): 109–16. Smith, D. G., and J. D. Moore. 2008. Medicaid Politics and Policy, 1965–2007. New Brunswick, NJ: Transaction Publishers. Starr, P. 1982. The Social Transformation of American Medicine. New York: Basic Books. Wagner, L. M., S. M. McDonald, and N. G. Castle. 2012. “Impact of Voluntary Accreditation on Deficiency Citations in US Nursing Homes.” Gerontologist 52 (4): 561–70. Walshe, K., and C. Harrington. 2002. “Regulation of Nursing Facilities in the United States: An Analysis of Resources and Performance of State Survey Agencies.” Gerontologist 42 (4): 475–86.

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CHAPTER 15

FINANCING LONG TERM CARE SERVICES Patrick E. Nicovich, MPA, LNHA, and Mary Helen McSweeney-Feld, PhD

Learning Objectives After completing this chapter, you should be able to ➤➤ distinguish the characteristics of public versus private sources of financing for long-term care services; ➤➤ recognize the role of long-term care insurance as a source of payment; ➤➤ discuss the impact of the Affordable Care Act on reimbursement for long-term care services; ➤➤ relate the assessment process to the need for long-term care services; ➤➤ identify and understand a variety of financial management tools used by long-term care administrators in residential and community-based settings; ➤➤ summarize new governmental payment initiatives and how they impact long-term care organizations, including COVID-19 initiatives; and ➤➤ discuss approaches for financing of long-term care services in the future, including public and private solutions.

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Financing and reimbursement issues in long-term care largely determine people’s access to and use of much-needed services. Government decisions about payment have a powerful impact on the ability of individuals to live productive lives in the community. To fully understand the structure of the long-term care service delivery system in the United States, healthcare managers must look at the public and private payment systems that have evolved throughout much of the twentieth century and into the twenty-first. In addition, managers must understand the basic financial management tools used by healthcare organizations and recognize the importance of these tools in long-term care service provision. This chapter provides an overview of private and public sources of reimbursement, including new payment initiatives, and explores how individuals’ eligibility and levels of coverage are assessed under the various programs. It also examines financial management tools used by healthcare administrators in long-term care settings and demonstrates how those tools can help ensure payment for services rendered. Finally, public long-term care insurance systems in Germany, Japan, and South Korea are compared with the system in the United States.

L o n g -T e r m C a r e S e r v i c e R eimbur s emen t S tat e s

in the

U ni t ed

Long-term care in the United States is financed through both private resources and public programs. Private resources include unpaid or donated care from family members or friends, out-of-pocket spending, commercial insurance payments (although these payments are typically limited), and private long-term care insurance. Medicaid and Medicare are the chief public programs responsible for financing long-term care, though the Department of Veterans Affairs and the Social Services Block Grant program also provide some funding. P r i vat e S o u r c e s O f P ay m e n t

Most individuals who need long-term services and supports rely heavily on donated or unpaid care from friends and family. In 2019, the estimated economic value of unpaid, informal care was $470 billion (Reinhard et al. 2019). The US tax system offers some relief for these expenses. Taxpayers with impairments and those whose dependents have impairments may deduct from their taxable income the portion of their caregiving costs up to $8,000 for one person, and up to $16,000 for two or more (AARP 2022). Other private sources of long-term care payment include reverse mortgages, annuities, and trusts. A reverse mortgage, a type of loan based on equity in a home, is available to individuals aged 62 or older living in a primary residence without a mortgage. Funds from a reverse mortgage may be received as a lump sum, in monthly payments, or in a line of credit. When certain guidelines are met, funds from reverse mortgages are considered as loan proceeds and not income, and are not taxable, and they can help enable recipients to continue living in their homes (IRS 2022).

reverse mortgage A type of loan based on equity in a home, available to individuals aged 62 or older living in a primary residence without a mortgage.

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annuity A long-term care payment option that involves a contractual arrangement with an insurance company.

trust A complicated legal instrument that can allow for assets to be used to pay for longterm care services when certain legal and tax requirements are met.

private long-term care insurance Specialized private insurance that pays the cost of nursing home care and home and community-based care, though typically with a maximum daily benefit level of reimbursement.

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Annuities are an option for long-term care expenses independent of current health status. An annuity is a contractual arrangement that can allow for a onetime cash payment or a series of monthly payments from an insurance company to the purchaser of the annuity (Rodeck and Curry 2020). Annuities can provide a person with a predictable stream of income in retirement. Annuity payments may affect eligibility for Medicaid and Medicaid coverage for long-term care services (Silvestrini 2022). Trusts are another private payment source that relies on advance financial planning. In general, a trust is a complicated legal instrument that allows assets to be used to pay for long-term care services when certain legal and tax requirements are met. Under Medicaid rules, states may allow qualifying income trusts (QITs) for Medicaid applicants. An applicant with excess income to qualify for Medicaid can establish a QIT to shelter the income over the Medicaid limit and still be eligible for Medicaid in the long-term care facility. The trust applies only for income and not assets (Title 42 2010). Employer-sponsored health insurance plans and managed care plans offer some reimbursement for long-term care services, although the level of reimbursement is usually limited. Plans may offer payment for home care services, for a limited number of nursing home days, or for rehabilitation care, but these plans are not intended to provide comprehensive coverage for long-term care. Private long-term care insurance policies were an addition to the insurance markets in the 1970s, and the payment they provide depends on the extent of coverage selected by the policyholder. Currently, less than 8 percent of the US population aged 55 and older (about 7.5 million people) is believed to have private long-term care coverage (National Association of Insurance Commissioners 2019). People often choose not to purchase private long-term care insurance because they cannot afford it, because they underestimate the risk of events requiring long-term care, or because they perceive that government programs will provide sufficient coverage. An accurate estimate of payments to the insured is difficult to obtain. Payments that insurers make directly to providers can be measured, but insurers’ reimbursements to policyholders for out-of-pocket payments can be easily missed. Thus, estimates of long-term care insurance payments should be interpreted with caution. A typical long-term care insurance policy covers nursing home care along with home and community-based care up to a daily expenditure limit (e.g., $150 per day). Policies may protect against inflation by increasing benefits by a specific percentage (e.g., 5 percent) each year. They may also have a nonforfeiture benefit, which, in the event that a policyholder cancels their policy, continues protection based on the length of time the policy was in effect and the premiums paid. Though some policies offer coverage without a time limit, most cover a specific period (e.g., two to five years) or include a preestablished maximum lifetime benefit amount. Eligibility to collect benefits generally begins when the policyholder reaches a certain level of impairment, most often loss of ability to perform two or three activities of daily living (ADLs) or a cognitive impairment that causes them to need substantial supervision.

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The long-term care insurance policy can be purchased individually or through an employer. Insurance premiums paid for a qualified plan are tax deductible for those who file an itemized return. The number of employee-sponsored long-term care insurance plans has fluctuated over the years. A report from 2018 revealed that 32 percent of employers sponsor long-term care insurance plans, up by 10 percent from the previous year (Sammer 2019). Younger people pay lower premiums for long-term care policies than older people do, which reflects their lower risk of needing long-term care services in the short term and the increased likelihood that they will pay premiums for a significant amount of time before they eventually do require services. Individuals who select more comprehensive policies—those with longer periods for benefits payment, as well as inflation and nonforfeiture protection—will pay higher premiums. Premium guarantees, a feature of some long-term care policies, prevent premiums from increasing over time, even as the risk of needing services rises. Insurers calculate premiums to ensure that the total payments over the policy’s life, combined with the interest earned through investment of the payments, cover the policyholder’s claims and the costs to the insurer. However, if new information is released that indicates current premiums and investment returns for a specific group of policyholders (e.g., all policyholders in a particular state) will not cover the expected expenditures, insurers may raise the premiums of all members of that group. Government Programs: Medicaid

and

Medicare

Government funding sources pay for most formal long-term care services in the United States. The two main public programs that help finance long-term care in the United States are Medicaid and Medicare.

CRITICAL CONCEPT Private Long-Term Care Insurance

According to the Congressional Research Service (CRS 2020), in 2018, almost 6.6 million individuals in the United States had an active long-term care insurance policy; 69 percent were sold as individual policies, and 31 percent were group policies. In recent years, the long-term care insurance market has grown (albeit slowly), and policies have changed substantially. Today’s policies generally provide similar coverage for residential care, home and community-based care, and other services such as assistive technology.

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In 2018, an estimated $379 billion was spent on long-term services and supports (LTSS) for older adults and people with disabilities. Of that amount, Medicaid paid 52 percent, out-of-pocket payments accounted for 16 percent, private insurance (including private long-term care insurance) paid 11 percent, and other private and public sources paid 20 percent. Approximately $95 billion was paid for home and community-based services (HCBS), with another $72 billion for long-term care. In contrast, Medicare spending on post-acute care during the same period was $83.3 billion (Watts, Musumeci, and Chidambaram 2020). Medicaid

categorically needy The basis for determining eligibility for a service or reimbursement that is related to medical diagnoses and not necessarily restricted because of high income.

Medicaid, funded jointly by the states and the federal government, is the largest of the government funding sources for long-term care. It provides medical benefits for certain groups, including low-income, impaired seniors. Though specific Medicaid benefits differ by state, the program generally covers services provided in nursing facilities, at home, and in the community. Working within guidelines set at the federal level, each state administers its Medicaid program and determines standards for eligibility, payment rates, and scope of services. Recall from chapter 9 that means testing involves determining whether an individual meets a program’s eligibility criteria, which generally are based on income level. Another classification, categorically needy, forms the basis for determining eligibility for a service or reimbursement that is related to medical diagnoses and not necessarily restricted because of high income. In some instances where these criteria overlap, eligibility may be based or a combination of the two types. A statutory formula, known as the Federal Medical Assistance Percentage, determines how much of a state’s Medicaid expenditures the federal government will pay; nationwide, that number has been estimated at around 56 percent for long-term care (Kaiser Family Foundation 2019). The Affordable Care Act (ACA) provides incentives for states to increase the statutory formula numbers. Medicaid spending for long-term care has been projected to grow from $130 billion in 2020 to $179 billion in 2030, with Medicaid expenditures on nursing home services increasing 4.7 percent and expenditures on home health increasing 6.9 percent per year above inflation through 2030 (He and Gokhale 2022). Medicaid traditionally spent less on HCBS than on nursing home care. Recognizing the bias toward institutional care, provisions of the ACA were enacted to assist the states in balancing the provision of Medicaid services by expanding access to an array of HCBS programs and reducing a state’s dependence on institutional care to address the needs of its low-income population. With the incentives offered under the passage of the ACA, Medicaid has become the primary payer for HCBS services. The program has increased spending on HCBS, including personal care services, home health care, and HCBS waiver programs. These optional incentive programs offer states greater flexibility in targeting certain populations, ability to use standard income and functionality eligibility criteria placing HCBS

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on equal footing with nursing homes and allowing states to offer HCBS care service plans designed to meet the individual’s needs (Watts, Musumeci, and Chidambaram 2020). Medicaid HCBS enrollment and spending data for the 2018 fiscal year show that most HCBS services are provided via an optional Medicaid waiver program. This program gives states the option to provide enhanced community support services not included under federal statutes for people with impairments. In 2018, HCBS expenditures under Medicaid by the federal and state government were estimated at $92 billion, with the majority spent under optional programs for HCBS (Watts, Musumeci, and Chidambaram 2020). Optional Medicaid programs have expanded services, but not consistently across the states. Access to optional Medicaid HCBS programs and spending significantly vary across states because of state budgetary limitations and a concern about the ability to continue programs if federal funding were to cease to exist. Medicare

Medicare covers care given at home and a limited amount of care in skilled nursing facilities (SNFs) for individuals aged 65 or older, those who have received Social Security disability benefits for more than two years, and those with amyotrophic lateral sclerosis (ALS, also known as Lou Gehrig’s disease) or end-stage renal disease. It is a federal health insurance program funded by general government revenues, payroll taxes, and beneficiary premiums. There are no income or asset limitations. Medicare consists of various programs, four parts of which will be discussed here. Part A covers hospital and SNF stays of up to 100 days. It is noncontributory for plan participants until day 21, when a daily out-of-pocket coinsurance comes into effect, assuming plan participants still meet the need for nursing home care. Medicare Part B, commonly known as medical insurance through the Medicare program, covers physician, durable medical equipment, and outpatient services. It is a voluntary program whereby recipients pay a monthly premium. Medicare Part C is a managed care version of Medicare that replaces benefits in Part A and Part B with a comprehensive managed care network. Medicare Part D covers some prescription drug expenses, depending on the level of coverage selected by the participant, subject to plan limitations and coverage gap (also known as the “donut hole”). The gap is a temporary limit on what the drug plan will cover under Part D. The recipient’s cost during the gap is limited (currently 25 percent) and will potentially change from year to year (Medicare.gov 2022a). As there are deductibles and copays involved in traditional Part A and B Medicare, many Medicare beneficiaries purchase supplemental coverage known as Medigap policies, which are available from major insurance carriers. The associated cost is in addition to the Part B insurance premiums paid (Medicare.gov 2022b). The primary purpose of Medicare is to assist beneficiaries as they recover from acute episodes of illness; it does not finance long-term care. However, the program offers a home health benefit that essentially provides limited long-term care coverage. Beneficiaries who are

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at home and need intermittent care from a licensed professional, such as a registered nurse or physical therapist, are eligible for this benefit. Such beneficiaries are also reimbursed for care from a home health aide, who can provide related LTSS. In 2020, the Congressional Research Service issued a comprehensive report providing an overview of long-term care and financing options. The report highlighted the role of Medicare spending, noting that projected program spending in 2020 totaled $40.7 billion—$24.4 billion for skilled nursing and $16.3 billion for home health care (CRS 2020). Dual Eligibility Qualified Medicare Beneficiary (QMB) A Medicare savings program that assists eligible individuals with the cost of

An individual may be a beneficiary of both programs. Entitled for both Medicare and Medicaid, the dually eligible recipient must meet the requirements of each program. A Medicaid beneficiary may also qualify to be a Qualified Medicare Beneficiary (QMB) who receives assistance paying the copays and deductibles under Medicare, as described by the Centers for Medicare & Medicaid Services (CMS 2021c).

premiums and deductibles.

Patient Driven Payment Model (PDPM) The skilled nursing facility prospective payment system based on the unique characteristics, needs, and goals of each resident.

Care Area Assessment (CAA) A systematic review of information obtained about a resident through Medicare’s Minimum Data Set assessment tool.

The Medicare Prospective Payment System for Long-Term Care Facilities

In 1998, Medicare implemented a prospective payment system to guide its payment for services delivered in long-term care facilities. The program relies on a standardized screening, assessment, and data collection tool called the Resident Assessment Instrument (RAI) / Minimum Data Set (MDS), Version 3.0. The MDS is the primary instrument used by Medicare to determine the level of care needed and the payment for services delivered at nursing homes and swing bed providers (i.e., hospitals that have beds that can be used to provide long-term care or acute care). The MDS was described in greater detail in chapter 14. At every long-term care facility certified for participation in Medicare and Medicaid, an interdisciplinary team should complete an MDS for each resident upon admission. The results should be submitted to CMS. The MDS survey includes items intended to measure residents’ physical, psychological, and psychosocial functioning, and it aims to provide a multidimensional view of each resident’s functional capacities. The MDS also identifies specific resident needs that must be met by the nursing facility, and it specifies a discharge plan for each resident. The data collected through the MDS assessment process are used in the calculation of CMS quality indicators, which can point out potential problem areas in care. The data also are used in the Patient Driven Payment Model (PDPM) to determine levels of payment, and the Care Area Assessment (CAA) process, which identifies and evaluates the resident’s strengths, potential problems, and needs for specialized services (CMS 2021b). The PDPM replaces the previous volume-driven SNF payment model. PDPM is a new case-mix reimbursement model for SNFs implemented in October 2019 by CMS for Medicare payment under Part A coverage. It replaces the previous RUG-IV Copying and distribution of this PDF is prohibited without written permission. For permission, please contact Copyright Clearance Center at www.copyright.com.

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PPS model, which reimbursed SNFs across five categories based on the number of therapy minutes. As illustrated in exhibit 15.1, whereas RUG-IV (left) reduces everything about a resident to a single, typically volume-driven, case-mix group, PDPM (right) focuses on the unique, individualized needs, characteristics, and goals of each resident. The PDPM is based on resident characteristics identified in the MDS assessment. PDPM uses the resident’s diagnoses and clinical factors to set reimbursement in five categories—physical therapy, occupational therapy, speech language pathology, nursing services, and nontherapy ancillary conditions and services. A sixth component, standard for all Medicare beneficiaries, is based on SNF resources used during the stay. All six components are included in calculating a per diem rate. Rates driven by patient data and characteristics will vary among residents. By addressing each individual resident’s unique needs independently, PDPM improves payment accuracy and encourages a more patient-driven care model. Exhibit 15.2 provides an illustration on how data-driven rates differ under PDPM.

Nursing Needs

EXHIBIT 15.1 RUG-IV vs. PDPM

PT Needs

NTA Needs NTA Needs

Therapy Needs

OT Needs Patient

Nursing Needs

SLP Needs

RUG-IV Group

Source: CMS Medicare Learning Network (2022), 10.

EXHIBIT 15.2 Effect of PDPM

PT Needs

OT Needs

PT Needs

NTA Needs

OT Needs

Patient A

Nursing Needs

NTA Needs Patient B

SLP Needs

Nursing Needs

SLP Needs

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CURRENT ISSUE Value-Based Reimbursement in Long-Term Care

The issue of quality management in the delivery of LTSS has been a primary focus of CMS in recent years. On the basis of data collected from providers, CMS has developed a comprehensive Care Compare website through which nursing homes, home health agencies, dialysis centers, and hospitals can view their performance on key quality indicators in comparison with the performance of primary competitors, state averages, or national statistics. The public also has access to the website as the indicators are published on the CMS website and updated periodically. CMS has also created new value-based reimbursement programs for Medicare-certified providers such as SNFs and home care, which tie reimbursement for services to the quality of outcomes for Medicare beneficiaries, as well as accountable care organizations (ACOs). However, these models have faced recent challenges attributable to the impact of COVID-19 and the downside risk of the ACO model (Muhlestein et al. 2021).

Medicare projected the change in models to be budget-neutral (no impact on the federal budget). Results for 2020 indicated an 8 percent average increase in Medicare’s payments to SNFs, while costs grew 2.1 percent, as reported by the Medicare Payment Advisory Commission (MedPAC 2022). Historically, Medicare has made frequent adjustments to reimbursement model regulations in the past to meet budget goals, which are hard to predict. Changes may continue to be needed to align Medicare’s aggregate payments to nursing home providers with aggregate costs (MedPAC 2022). See the related Current Issue sidebar “Value-Based Reimbursement in Long-Term Care.” Reports stemming from the MDS provide information at the state and county level for every Medicare- and Medicaid-certified nursing home in the United States. Each facility’s quality indicators are published, along with information about nursing home surveys and staffing, on the CMS Nursing Home Compare website. Because of the significant number of changes in the MDS and PDPM processes, nursing homes and other facilities accepting Medicare residents face ongoing challenges in implementing new assessment and data collection tools and in experiencing their impact on reimbursement.

F i n an c i al M a n a g emen t T oo ls A d m i n i st r at o r s

for

L ong -T erm C are

Financial management is a key competency for long-term care administrators. A firm knowledge of financial principles and tools is essential for resident services management, human

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resources management, leadership and governance, and management of the environment. Such knowledge also helps administrators understand Medicare and Medicaid regulations and comply with applicable laws, rules, and procedures. Proper financial management and budgeting methods help operationalize strategic planning while also ensuring accuracy of reimbursement and reducing the risk of Medicare audits related to fraud and abuse. Mastering the financial management tools will help the administrator achieve the financial goals of the facility. Use of the tools provides the financial indicators necessary to adjust financial plans when needed. The National Association of Long Term Care Administrator Boards includes finance as one of the content areas examined for licensure of nursing home and assisted living administrators. The classic management functions of control and planning are encompassed in financial management. A budget and accounting and financial statements are routine tools used by the administrator to manage the financial health of the facility. A budget is a financial plan of both revenue and expenses. Revenue, expenses, and financial transactions recorded appropriately provide necessary information to the administrator on the financial status of the facility at a given point in time.

415

operating budget A budgeting tool that details, in terms of dollars, how resources are acquired and used for a period of one year or less. It consists of a

Budgeting

revenue budget and an

A variety of budgeting tools exist, but the two most commonly used are the operating budget and the capital budget. The operating budget details, in dollar terms, how resources are acquired and used for one year or less. It consists of a revenue budget and an expense budget. Revenue budget estimates in long-term care are based on the service mix as well as the patient classification. The daily reimbursement for each Medicare patient is determined through the PDPM reimbursement system. The reimbursement for each resident is categorized based on their unique skilled care requirements and diagnoses and other clinical factors. Medicaid reimbursement is set by each state based on certain facility data. The set facility rate is paid, less any applicable resident resources such as their Social Security funds. Rates for managed care plans, Veterans Administration (VA) residents, worker’s compensation cases, and private insurance, including long-term care insurance, are negotiated. The forecasted occupancy and reimbursement data are building blocks for the operating budget. The capital budget includes plans for long-term expenditures, including land, facilities, and equipment. Capital outlays benefit the organization for extended periods and require thorough analysis before purchase. Capital equipment purchases are defined by an organizationally defined dollar threshold (e.g., $5,000) and must have a useful life greater than one year. Use of a capital budget facilitates planned improvements and equipment replacements, preferably in advance of an urgent need or crisis. A number of methods may be used in preparing the operating budget. Incremental budgeting, the traditional budgeting method, uses the previous period as

expense budget.

capital budget A budgeting tool that outlines plans for long-term expenditures, including land, facilities, and equipment.

incremental budgeting A method of budgeting that uses the previous period as the basis for any incremental additions for the new budget period.

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zero-based budgeting A method of budgeting that requires all expenses to be justified for each year.

activity-based budgeting A budgeting approach based on activities that incur costs in the various functional areas of the organization.

payer mix A summary of the sources of reimbursement in a medical entity.

operating income The amount of profit earned from operations after subtracting expenses.

operating margin The profit made on operations after subtracting variable costs but before paying taxes or interest expense.

D i m e n s i o n s o f L o n g - Te r m C a r e M a n a g e m e n t

the basis for any incremental additions for the new budget period. In this method, resource allocation is based on allocations from prior years. In contrast, zero-based budgeting requires that all expenses be justified for each year. Activity-based budgeting is based on the activities that incur costs in the various functional areas of the organization. It involves defining and analyzing relationships between the activities to help control costs. Regardless of the method used, the administrator typically develops an operating budget using a top-down approach—that is, an approach that begins with a high-level budget prepared by senior management. Parameters determined by senior management guide the development of the new budget. The administrator involves key departmental managers in the budget process to finalize the budget. Gaining input and insight from managers in budget development assists with the implementation in each department. Some corporations restrict an administrator’s flexibility in the development and management of the budget. The lack of involvement or flexibility in the creation of the budget can reduce the managerial effectiveness of administrators. The budget is a dynamic plan and not static. It is driven by census data for both revenue and expenses. Projecting patient payment mix and patient acuity is necessary as each admission has differing reimbursement amounts and associated costs. The administrator generally relies on historical data as a starting point to ascertain an average per patient day (PPD) revenue estimate for each pay classification of patient. Exhibit 15.3 is an example of revenue projections based on the average PPD by payer mix—a summary of the sources of reimbursement in a medical entity, such as Medicare, Medicaid, private pay, commercial insurance, and health maintenance organizations. Expenses can also be projected on a PPD basis from examining the previous year’s experience. For budgeting and reporting purposes, the facility is divided into cost centers or departments. For example, Nursing, Dietary, and Environmental Services are the three largest departments, and each is a separate cost center. All cost centers are budgeted funds for salaries, benefits, materials, and supplies on a PPD basis. Labor budgets reflect the hours allocated to each cost center (see exhibit 15.4). Department managers use scheduling, time, and attendance tracking as well as spend-down forms to responsibly control expenses in their budgets. The spend-down process used for monitoring tracks expenses as they are incurred and subtracts from the monthly budget the amount allocated to the cost center on a PPD basis. This process helps managers and the administrator oversee the monthly allocation. As census changes, the PPD allocation each month changes as well (see exhibit 15.5). Once the budget is finalized, the difference between revenue and income represents the operating income. The facility’s operating margin represents the total profit (or loss) as a percentage of revenue. The operating margin is a key financial target tracked by the administrator.

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CH15.indd 417

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133.5 94.7 48,728

Budgeted daily census

Budgeted occupancy (%)

Budgeted resident census 4,139

94.7

133.5

2,542

82.0

29,930

1,597

Budgeted ALF days

18,798

Budgeted SNF days

51.5

82.0

51.5

Budgeted SNF daily census

97.2

Budgeted ALF daily census

97.2

Budgeted SNF occupancy (%)

94

87.2

94

ALF capacity

88

87.2

88

# ALF beds

53

Budgeted ALF Capacity (%)

53

# SNF beds

141

93.2

141

# of beds

31

Jan 2011

Budgeted ALF occupancy (%) 93.2

365

Days in month

Total

EXHIBIT 15.3 Sample Budget Census and Revenue

3,738

94.7

133.5

2,296

82.0

87.2

93.2

1,442

51.5

97.2

94

88

53

141

28

Feb 2011

4,139

94.7

133.5

2,542

82.0

87.2

93.2

1,597

51.5

97.2

94

88

53

141

31

Mar 2011

4,005

94.7

133.5

2,460

82.0

87.2

93.2

1,545

51.5

97.2

94

88

53

141

30

Apr 2011

4,139

94.7

133.5

2,542

82.0

87.2

93.2

1,597

51.5

97.2

94

88

53

141

31

May 2011

4,005

94.7

133.5

2,460

82.0

87.2

93.2

1,545

51.5

97.2

94

88

53

141

30

Jun 2011

4,139

94.7

133.5

2,542

82.0

87.2

93.2

1,597

51.5

97.2

94

88

53

141

31

Jul 2011

4,139

94.7

133.5

2,542

82.0

87.2

93.2

1,597

51.5

97.2

94

88

53

141

31

Aug 2011

4,005

94.7

133.5

2,460

82.0

87.2

93.2

1,545

51.5

97.2

94

88

53

141

30

Sep 2011

4,139

94.7

133.5

2,542

82.0

87.2

93.2

1,597

51.5

97.2

94

88

53

141

31

Oct 2011

4,005

94.7

133.5

2,460

82.0

87.2

93.2

1,545

51.5

97.2

94

88

53

141

30

Nov 2011

continued

4,139

94.7

133.5

2,542

82.0

87.2

93.2

1,597

51.5

97.2

94

88

53

141

31

Dec 2011

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CH15.indd 418

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51.5 97.2 18,798 30.5

SNF budgeted daily census

SNF budgeted occupancy (%)

SNF budgeted census

SNF budgeted Q-mix

100.0

1.0 100.0

HMOs

18,800

TOTAL

444.0

5,229 186

SCO

7,839

Medicaid/COB

HMOs

666.0

1,789

Medicare

1,597

16.0

152.0

3,757

319.0

27.8

Private

Case mix days

TOTAL

1.0

27.8

SCO

9.5 41.7

9.5 41.7

Medicare

20.0

20.0

30.5

1,597

97.2

Medicaid/COB

Private

Case mix %

53

53

# of SNF beds 51.5

31

365

Days in month

2011

Annual Jan

1,441

14.0

401.0

601.0

137.0

288.0

100.0

1.0

27.8

41.7

9.5

20.0

30.5

1,442

97.2

51.5

53

28

Feb 2011

EXHIBIT 15.3 Sample Budget Census and Revenue (continued)

1,597

16.0

444.0

666.0

152.0

319.0

100.0

1.0

27.8

41.7

9.5

20.0

30.5

1,597

97.2

51.5

53

31

Mar 2011

1,545

15.0

430.0

644.0

147.0

309.0

100.0

1.0

27.8

41.7

9.5

20.0

30.5

1,545

97.2

51.5

53

30

Apr 2011

1,597

16.0

444.0

666.0

152.0

319.0

100.0

1.0

27.8

41.7

9.5

20.0

30.5

1,597

97.2

51.5

53

31

May 2011

1,545

15.0

430.0

644.0

147.0

309.0

100.0

1.0

27.8

41.7

9.5

20.0

30.5

1,545

97.2

51.5

53

30

Jun 2011

1,597

16.0

444.0

666.0

152.0

319.0

100.0

1.0

27.8

41.7

9.5

20.0

30.5

1,597

97.2

51.5

53

31

Jul 2011

1,597

16.0

444.0

666.0

152.0

319.0

100.0

1.0

27.8

41.7

9.5

20.0

30.5

1,597

97.2

51.5

53

31

Aug 2011

1,545

15.0

430.0

644.0

147.0

309.0

100.0

1.0

27.8

41.7

9.5

20.0

30.5

1,545

97.2

51.5

53

30

Sep 2011

1,597

16.0

444.0

666.0

152.0

319.0

100.0

1.0

27.8

41.7

9.5

20.0

30.5

1,597

97.2

51.5

53

31

Oct 2011

1,545

15.0

1,597

16.0

444.0

666.0

152.0

319.0

100.0

1.0

27.8

41.7

9.5

20.0

30.5

1,597

97.2

51.5

53

31

Dec 2011

continued

430.0

644.0

147.0

309.0

100.0

1.0

27.8

41.7

9.5

20.0

30.5

1,545

97.2

51.5

53

30

Nov 2011

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CH15.indd 419

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51.5

TOTAL 51.5

0.5

14.3

21.5

4.9

10.3

$357.00

© Bill McGinley

HMOs TOTAL 421,641

4,963,424

95,904

51.5

0.5

14.3

21.5

4.9

10.3

74,286

5,712

95,904 5,335

92,880

128,372 124,131

76,813

114,840 111,240

51.5

0.5

14.3

21.5

4.9

10.3

5,712

95,904

128,372

76,813

114,840

51.5

0.5

14.3

21.5

4.9

10.3

380,370 421,641 407,892 421,641

4,998

86,616

128,372

5,712

69,233 115,843

76,813

103,680

51.5

0.5

14.3

21.5

4.9

10.3

114,840

51.5

0.5

14.3

21.5

4.9

10.3

66,402

Beg. Rate Increase Increase (%) Date $360.00 0.0 8/1/ Private 1,352,520 2008 Medicare $505.35 904,071 Medicaid $192.75 1,510,967 / COB $216.00 SCO 1,129,464

0.5

HMOs

Revenue

14.3

SCO

4.9 21.5

Medicare

Medicaid/COB

10.3

Private

Average Daily Census

EXHIBIT 15.3 Sample Budget Census and Revenue (continued)

5,712

95,904

128,372

76,813

114,840

76,813

421,641

5,712

95,904

128,372

74,286

76,813

74,286

111,240

51.5

0.5

14.3

21.5

4.9

10.3

5,712

95,904

5,712

95,904

128,372

76,813

114,840

51.5

0.5

14.3

21.5

4.9

10.3

407,892 421,641

5,335

92,880

128,372 124,131

407,892 421,641

5,335

92,880

124,131

114,840

51.5

0.5

14.3

21.5

4.9

10.3

111,240

51.5

0.5

14.3

21.5

4.9

10.3

114,840

51.5

0.5

14.3

21.5

4.9

10.3

407,892 421,641

5,335

92,880

124,131

74,286

111,240

51.5

0.5

14.3

21.5

4.9

10.3

CH15.indd 420

© Bill McGinley

DIETARY DIRECTOR OF NURTITIC KITCHEN MANAGER COOK DIETARY AIDES DIETARY TECH TOTAL DIETARY Hrs/ppd

Department HOURS

Total WMRC Census

DAILY CENSUS SKILLED CENSUS ALF CENSUS

DIETARY

EXHIBIT 15.4 Sample Labor Budget

0 12 24 24 16 76 0.57

SUN 8 12 24 24 16 84 0.63

MON

51.5 82.0 133.5

51.5

MON

82.0 133.5

SUN

8 11 24 24 16 83 0.62

TUE

82.0 133.5

51.5

TUE

8 11 22 24 16 81 0.61

WED

82.0 133.5

51.5

WED

8 11 22 24 16 81 0.61

THU

82.0 133.5

51.5

THU

8 11 22 24 16 81 0.61

FRI

82.0 133.5

51.5

FRI

0 11 22 24 16 73 0.55

SAT

82.0 133.5

51.5

SAT

40.00 79.00 160.00 168.00 112.00 559.00 0.60

Totals

82.0 133.50

51.50

0.04 0.08 0.17 0.18 0.12 0.60

BUDGET PPD

574.0 934.5

360.5

Averages Total Days

0.04 0.08 0.22 0.24 0.18 0.76

0.00 0.00 -0.05 -0.06 -0.06 -0.16

ACTUAL VARIANCE PPD

420 D i m e n s i o n s o f L o n g - Te r m C a r e M a n a g e m e n t

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CH15.indd 421

WOOD-FRUITCHER BARBER DAIRY BURNETT’s FARMS FLOWERS BAKERY WOOD-FRUITCHER SWANS DAIRY BRADLEY BROS          

7/2/2020

7/2/2020

7/3/2020

7/8/2020

7/9/2020

7/9/2020

7/9/2020

 

 

 

 

 

© Patrick Nicovich

WOOD-FRUITCHER

7/1/2020

Vendor

July-20

Month

Date

22-1487

RAW FOOD

G.L. Account #

Account Name:

EXHIBIT 15.5 Sample Spend-Down Form—Dietary

Item

 

 

 

 

 

INVOICE PAT#188

INV 7/14/2020

INVOICE 3209

TICKET #1807 Route 4

INVOICE JULY 3

INVOICE #JRHC-889

INVOICE #2295

INVOICE #2278

 

 

 

Invoice Amt (w/shipping

 

 

 

 

 

$ 275.99

$ 288.15

$ 1,819.32

$ 600.00

$ 308.75

$ 1,837.44

$ 8,322.00

$ 3,944.00

 

 

 

$23,834

$23,834

$23,834

$23,834

$23,834

$23,834

$24,110

$24,398

$26,218

$26,818

$27,127

$28,964

$37,286

Balance

Budget

$41,230.00

 

C h a p t e r 1 5 : F i n a n c i n g L o n g Te r m C a r e S e r v i c e s 421

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422

net income Revenues minus expenses, a measure of the profitability of an organization.

variance analysis The process of analyzing differences between budgeted and actual costs and identifying operational areas for examination and scrutiny.

D i m e n s i o n s o f L o n g - Te r m C a r e M a n a g e m e n t

Financial management tools provide key indicators by which organizations can assess the financial health of their operations. The most common measure of financial health is net income, which is reported on the income statement. Net income, defined as revenues minus expenses, measures the profitability of the organization. Other indicators complete the organization’s financial profile and therefore must be part of the financial assessment. Variance analysis focuses on differences between budgeted and actual figures and identifies operational areas for examination and scrutiny. At a minimum, administrators will want to monitor the income statement for differences between budgeted revenue and actual revenue and between budgeted expense and actual expense. Administrators should also use ratios based on indicators developed from the financial statements. Such ratios help measure the organization’s financial performance and allow for comparison against industry standards. The number of financial ratios that can be calculated is virtually unlimited, so the choice of meaningful ratios depends on the business being analyzed and the purpose of the analysis. F i n a n c i a l A cc o u n t i n g

generally accepted accounting principles (GAAP) Standards set forth by the accounting profession to guide organizations’ financial reporting.

balance sheet A financial statement that provides a snapshot of the organization at a point in time.

income statement A financial statement that reports results of operations over a specific period. Also called a statement of operations.

Organizations report the results of their operations in financial statements, which are developed according to generally accepted accounting principles (GAAP). Adherence to GAAP creates a common financial language for the investors, stakeholders, and regulators who “read” the statements. Several key financial statements communicate the organization’s annual results of operations. The balance sheet provides a snapshot of the organization at a point in time, such as the last day of the month or the last day of the fiscal year. The income statement, or statement of operations, reports results of operations over a specific period. The income statement reflects total income from all sources. It also includes the total expenses by category. The difference is either the net profit earned or the net loss incurred for the particular period. The statement of cash flows describes cash flows into and out of the organization and categorizes the cash flows as operations, investments, or financing. It provides an indication of the financial health of an organization. A positive cash flow (inflow of cash exceeds the outflow) is one measure that the organization will have sufficient cash liquidity to pay its obligations in a timely manner. A key index reflected in the income and cash flow statements is net operating income, which is used to analyze the profitability of a business. The Business Office manages the accounting processes for tracking and recording revenue and expenses. At set intervals (daily, weekly, monthly, quarterly, annually) the business office manager (BOM) creates the aforementioned financial accounting reports mentioned. In addition, the BOM produces management reports for use by the administrator and others to manage the facility. Management reports are tailored to the organization’s purposes, whereas the financial accounting reports are standardized. Though designed to meet the facility’s needs, there are industry tools followed that guide what data are most useful.

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C h a p t e r 1 5 : F i n a n c i n g L o n g Te r m C a r e S e r v i c e s

Chief among the tools is variance analysis reporting, which indicates the difference between an actual or realized numeric value and one budgeted. Variance analysis is used to monitor both income and expenses. Negative variances, particularly large ones, are investigated immediately to determine what action is needed. Unchecked negative variances can threaten the forecasted or planned profitability of the facility. The budgeted revenue goal is achieved by meeting targeted census (patient days) and payer mix. The average daily census is a guide to how many beds are filled or empty over time. The budget is based on averages with target goals set by payer mix. The administrator’s interpretation of this data guides the team on where resources may be needed to close any gaps in meeting revenue or payer mix targets. There are two types of costs: variable and fixed. Variable costs are those which are related to operating activity, such as census. A PPD cost for food or supplies will vary based on the building census. Fixed costs are those which would not fluctuate, such as insurance or telephone service. A standard tracking tool used by administrators is the dashboard, which is an information management tool for key business metrics. The facility’s financial and accounting system may offer a dashboard. If not, the administrator can develop a spreadsheet that can be shared among staff for input and monitoring. Dashboards are customized to meet the user’s needs and in long-term care can track data in an efficient manner by providing information critical to the business operations in one central location. The administrator can view key metrics such as average daily census, PPD costs, payer mix by type, total revenue by payer source, hours worked per patient day, total overtime hours, and raw food cost.

423

statement of cash flows A financial statement that describes cash flows into and out of the organization and categorizes the cash flows as operations, investments, or financing.

net operating income A before-tax figure, appearing on the income and cash flow statements of a business and used to evaluate the business’s profitability.

management reports A facility-defined set of reports that provide critical financial and operational data to management.

CURRENT ISSUE Financial Impact of COVID-19

average daily census A measure of the

One of the greatest challenges to the future of long-term care in the United States has been the impact of the COVID-19 pandemic. The pandemic has affected residents and healthcare workers, operations, the economy, financial markets, transactions and pricing, construction, and the materials supply chain. Staffing, long a concern, has be-

average number of patient days over a set period of time, calculated by dividing the total patient days

come a critical element in keeping residents safe. The pandemic has created further

for a set period by the

stressors on workers and facilities to keep sufficient staff well and available to work.

number of days in that

Staffing costs for overtime, supplemental staff, and COVID-related paid time off were

same period.

all unplanned for in operating budgets. The additional expenses for personal protective equipment, testing, and other equipment and supplies are significant. The disruption

variable costs

to the economy has been felt across the nation and impacts not only the supply chain

Operating costs that

but also the jobs in the community that support the residents and the workers. Loss

fluctuate with patient

continued

census; costs that are noncontrollable.

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424

fixed costs Operating costs that do

D i m e n s i o n s o f L o n g - Te r m C a r e M a n a g e m e n t

CURRENT ISSUE (continued) Financial Impact of COVID-19

not change based on census; costs that are controllable.

of employment by family members creates additional stress and concern. The credit markets are necessary for financing operations in the LTSS community. The Federal

dashboard A financial reporting tool used for

Reserve has taken steps to ensure that credit is available to keep operations afloat (Milstein and Wessel 2021). Occupancy rates in long-term care communities fell drastically during the pan-

comparative analysis

demic. The National Investment Center for Seniors Housing and Care (NIC) reported

of key performance

for the second quarter of 2020 that “combined occupancy for independent living and

data of a business operation.

assisted living communities fell 2.8 percentage points, from 87.7 % to 84.9 %, the largest quarterly decline” in the past 14-year period (Bowers 2020). There was a similar drop in occupancy in skilled nursing facilities: “Occupancy fell to 78.9 percent in April, compared to 84.7 percent just two months earlier and 84.4 percent one year ago.” (NIC 2020). The resulting loss of revenue was directly related to reduced hospital discharges and reduction of elective surgeries, in addition to the impact of the deadly virus on the current population. The loss of revenue has been addressed by the federal and state governments with the passage of new funding sources and through the exercise of emergency authority. Modifications in both Medicare and Medicaid have brought some relief. Advance payments under Medicare and changes to funding formulas and per diem rates under Medicaid have helped facilities. Medicaid has allowed states to execute temporary changes under Appendix K Medicaid 1915(c) Home and Community-Based Services Waiver regulation to ensure that care and services for the HCBS recipients is supported, with as little disruption as possible. Some examples of the changes implemented include the using virtual eligibility assessments, permitting remote services, expanding service delivery time limits, adding new service options such as home-delivered meals, medical supplies, and equipment, and providing COVID-related emergency services such as counseling (Musumeci 2020). Approximately 25 states have responded to the LTSS budget crisis by leveraging Medicaid funds to increase per diem rate reimbursements for specific purposes (Flynn 2020). In addition, the 2020 CARES Act provided financial relief to healthcare providers (Provider Relief Funds) and to all employers (Payroll Relief Fund) to replace lost revenue in LTSS communities (Congress.gov 2020).

Daily monitoring of the financial health of the facility is necessary not only to meet the financial goals set but also to ensure that resident services and support can be met with little to no disruption. This practice has become particularly important during the time of the COVID19 pandemic (see the accompanying Current Issue sidebar “Financial Impact of COVID-19”). Copying and distribution of this PDF is prohibited without written permission. For permission, please contact Copyright Clearance Center at www.copyright.com.

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C h a p t e r 1 5 : F i n a n c i n g L o n g Te r m C a r e S e r v i c e s

425

F i n a n c i a l R e p o rt i n g

State and federal laws require financial reporting for taxes, for cost reimbursement calculations, and as a tool to monitor for possible financial fraud and waste. The administrator is also responsible for the wise stewardship of the facility’s resources. They are entrusted to operate the facility following sound business practices including the careful management of the organization’s financial resources. The facility develops required checks and balances under the GAAP principles to ensure that funds are accounted for properly and to detect any fraud, theft, or embezzlement. Chief among the GAAP requirements is the segregation of duties. Monitoring revenue and expense variances is a quality assurance tool that can alert the administrator to areas of waste and potential preventable loss. Cost Reporting

Financial operating data are used in a cost finding and reporting process. Medicare requires long-term care facilities to submit an annual cost report that provides detailed facility information, utilization data, costs and charges by department, and other related data. The Medicare cost report is used to determine whether there are any reimbursements due the facility or any overpayments made by Medicare. The final amount due to or owed from the facility is called a settlement. State Medicaid programs also require providers to submit annual cost reports. In addition to identifying overpayments or underpayments, the cost report data are used in setting the daily per diem rate in the state (CMS 2022a). PEPPER

An administrative tool for monitoring utilization of Medicare services and payment is the Program for Evaluating Payment Patterns Electronic Report (PEPPER). The aim of this program is to enable comparison of a skilled nursing facility’s reimbursement picture relative to that of its Medicare peers. Such comparative data and analysis serve as basic monitoring elements for billing compliance and quality assurance. PEPPER, a spreadsheet program, uses discharge data across specific target areas to identify potential problems of overcoding and undercoding (PEPPER 2022). Data distribution occurs on an annual basis for most long-term care providers; short-term acute care hospitals are provided with quarterly statistics. PEPPER can be included as a best practice to support corrective action and to prepare for audits (Mastrangelo 2015). Audits

A long-term care facility is subject to routine and special audits. Cost report audits generally occur at set intervals. The auditing agency may conduct the audit on-site or remotely, called a desk audit. These audits validate the costs and expenses reported by the facility area associated with providing care to Medicare and Medicaid residents. The function of Copying and distribution of this PDF is prohibited without written permission. For permission, please contact Copyright Clearance Center at www.copyright.com.

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the audit is to determine over- or underpayment of claims based on costs incurred. If the facility has been overpaid, a refund will be collected. If underpaid, the amount would be paid to the facility. This process is known as cost settlement. CMS also conducts Medicare Fee-for-Service Recovery Audits that examine billing and medical records to verify that only reasonable and necessary services were provided and that the medical documentation supports the billing claims submitted. The audits are conducted by designated Recovery Audit Contractors (RACs) and thus are often called RAC audits. These audits are designed to “identify and correct Medicare improper payments through the efficient detection and collection of overpayments . . . to Medicare beneficiaries, and underpayments to providers [such as nursing homes] so that CMS can implement actions that will prevent future improper payments in all 50 states” (CMS 2021a). RAC audits are prompted by suspicious activity, billing errors, and complaints of fraud and abuse. Failing to have documentation that sufficiently supports any claim for Medicare services provided to a resident in a long-term care facility could result in repayment of the claim, expanded scope of the audit, or referrals to the Department of Justice for investigation related to fraud and abuse, or a combination of these consequences. Audits may also be required by the owner or a lender for financing and investment purposes. Special, random audits can be conducted if the appearance of suspicious or illegal activities exists (CMS 2021a). All businesses are subject to Internal Revenue Service audits, even not-for-profits.

P o l i c y I ss u e s : H ow F ut u r e

to

P ay

for

L ong -T erm C are

in

T he

The word crisis is frequently used in policy discussions regarding long-term care. Complicating the reform efforts are fiscal constraints, the growing US life expectancy, the prevalence of chronic illness in the aging population, the declining number of private insurers offering long-term care policies, and the lack of financial planning on the part of many individuals. Because government programs currently contribute a significant share of long-term care financing, the federal budget will face increased pressure as baby boomers age. F e d e r a l S p e n d i n g L i m i ts

The pressure on federal finances could be relieved by reducing the role of Medicaid and Medicare; however, potential policies to manage entitlement program growth offer no perfect options. One example of an attempt to limit costs is Medicaid’s five-year “look back” process, which allows states to review a person’s finances for a certain period before the person applied for assistance. The look back aims to identify inappropriate transfers of assets by individuals seeking to qualify for Medicaid while protecting those assets from the state (Eghrari 2014). Some attorneys specialize in helping Medicaid applicants manage their assets

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in such situations—a specialty sometimes known as Medicaid estate planning. The look back discourages some people from applying, but it has little overall impact on Medicaid spending. Encouragement

to

P r i vat e ly F i n a n c e L o n g -T e r m C a r e

Another approach to managing future federal spending on long-term care involves encouraging people to rely on private resources and further promoting the view that private insurance and government programs are complementary. A report published by the Congressional Research Service (CRS 2022) found that 7.8 percent of long-term care expenses are paid by private insurance. One factor affecting demand for private long-term care insurance is that such policies can be purchased through an employer only on a posttax basis, unlike employer-sponsored health insurance, for which employees pay with pretax dollars. The interaction between private insurance and Medicaid also affects demand. Favreault and Dey (2015) document the complex trade-offs between public and private DID YOU KNOW? spending for older Americans, and they underPublic–Private Partnerships for Long-Term Care score the risks of the present situation both for society and for individuals. Using projections from the Urban Institute, they point out that The Deficit Reduction Act of 2005 authorized a program to the average American who was aged 65 or older encourage the expansion of public–private partnerships for in 2015 will incur $138,000 in lifetime expenses long-term care. The law authorized changes in state law that for severe long-term care needs. Although 48 perpermit individuals to purchase long-term care insurance policent of the people in this population group will cies that coordinate with state Medicaid programs. Under these not experience any severe long-term care needs, policies, when individuals exhaust the benefits provided under 15 percent will have more than $250,000 in their long-term care insurance, the state Medicaid program will expenses. People who require care and are eligible pay for the remainder of their care without requiring them to for Medicaid can anticipate that Medicaid will spend down their assets. A number of these arrangements were assume about one-third of their lifetime expenses. initially created under the Partnership for Long-Term Care proIndividuals relying on private insurance to help gram sponsored by the Robert Wood Johnson Foundation in the manage the financial risk, however, will find fewer 1980s; however, only a handful of states kept active programs. private insurers in the market. Favreault and Dey The 2005 legislation allows for significant expansion of these conclude that people with severe long-term care types of partnerships. America’s Health Insurance Plans proneeds will pay about 50 percent of expenses out jected that such an expansion could lead to potential savings of pocket. Ultimately, this scenario suggests of $6 billion annually by 2050 (National Conference of State poor or inappropriate care and financial stress Legislatures 2022). The partnerships may also increase the atfor individuals and families, and thus it hightractiveness of long-term care insurance policies for individulights the need for new public policy solutions als who wish to maintain their assets for their families or other to address financing (see the accompanying “Did future beneficiaries. You Know?” sidebar on public–private partnerships for long-term care).

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P u b l i c L o n g -T e r m C a r e I n s u r a n c e : L e ss o n s South Korea

from

G e r m a n y , J a pa n ,

and

Since 1990, many of the world’s major industrialized nations have restructured their longterm care systems. Some countries have established public long-term care insurance programs that supplement their public health insurance programs. Such long-term care programs may provide paid assistance to family members or other caregivers and enhanced reimbursement for community-based services. Germany and Japan introduced public long-term care insurance programs in the 1990s, and the programs today are well established. South Korea followed in 2008. These countries implemented the programs because their older adult populations were growing, traditional resources for care were declining, and existing long-term care programs were widely considered costly, inefficient, and unfair. However, there are differences among the programs. Japan pays for a high level of community services, whereas Germany offers cash to support family caregiving services. Nonetheless, in both countries, the “social insurance programs are universal, support family caregivers, and allow individuals considerable flexibility in securing the services they require” (Campbell, Ikegami, and Gibson 2010). Since 2008, the South Korean universal health model has included mandatory long-term care insurance. The cost is included in the premiums paid for universal healthcare and provides for institutional and home-based care, along with cash benefits in exceptional cases. Originally, the eligibility assessment was highly reliant on functional abilities but has since been modified to include persons with dementia (Jeon and Kwon 2017). Campbell, Ikegami, and Gibson (2010) examined the goals, eligibility processes, scope, and sustainability of the German and Japanese programs, and they assessed the programs’ features for potential application in other countries. In comparing the costs of the programs with current US spending on long-term care, they found that US spending was higher than in Germany and slightly lower than in Japan (Campbell, Ikegami, and Gibson 2010). Chapter 9 provides a more detailed examination of long-term care in Germany and Japan. N e w L o n g -T e r m C a r e F i n a n c i n g

and

D e l i v e ry I n i t i at i v e s

The ACA has encouraged incremental advances in long-term care financing and delivery. In terms of financing, the ACA created a Federal Coordinated Health Care Office to reduce costs and improve coordination of care for dually eligible Medicare–Medicaid beneficiaries. Additionally, the CMS Innovation Center, also created through the ACA, develops long-term care initiatives to reduce program expenditures while maintaining or improving quality of care. One notable program, the Independence at Home Demonstration, tests a long-term care model using home-based primary care teams. This three-year initiative aims to improve quality of care for dually eligible long-term care recipients while offering

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incentive payments to providers who reduce Medicare expenditures and meet specified quality goals (CMS 2022b). The ACA extended and expanded the Money Follows the Person demonstration project aiding transition from nursing home residency into HCBS settings (Medicaid.gov 2022b). Additional ACA provisions strengthen rebalancing efforts to incentivize states to shift long-term care spending from institutional settings to HCBS. The Community First Choice program provides a 6 percent increase in federal Medicaid matching funds for participating states; these funds expand HCBS eligibility and support community-based attendant services. (Medicaid.gov 2022a; Miller 2012; Watts, Musumeci, and Reaves 2013).

A Look Ahead Long-term care services are currently financed through various sources, including private resources and government programs. The present financing structure is problematic, however, in that it includes incentives to rely on government programs and therefore may discourage some people from using private resources to prepare for their long-term care needs. The aging of the baby boom generation will increase demand for long-term care and exacerbate budgetary strains. Greater coordination of resources under government programs such as Medicare and Medicaid, combined with incentives for individuals to purchase private or public long-term care insurance, offer potential paths to more effective financing of long-term care.

F o r D i sc u ss i o n 1. What are the main sources of payment for long-term care services in the United States? 2. What impact will the baby boom generation have on the cost of long-term care services over the next decade and beyond? 3. Discuss three reasons why long-term care insurance has not been more popular in the United States. 4. How does Medicare assess a person’s need for long-term care services in a nursing home setting? 5. Describe the types of budgets that can be used by administrators to manage revenues and costs in long-term care organizations. 6. What is PPD, and how does it affect content in budget reports? 7. Identify and describe two initiatives under the Affordable Care Act to introduce new financing and service delivery programs for long-term care services. 8. Compare Medicare’s cost reports and their PEPPER reports, and explain how can they be used by long-term care providers as a quality assurance tool.

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9. What are the three major financial statements used by long-term care organizations, and what type of information do they provide? 10. Identify and describe two financial impacts that COVID-19 has had on long-term care providers.

Case Study: Managing A Budget During Tight F i sc a l T i m e s This year’s operating budget for Warren Manor Rehabilitation Center (WMRC) is based on a number of key variables. The facility has a total capacity of 141 beds, 53 skilled nursing (SNF) and 88 residential care, or assisted living (ALF), beds. The administrator projected the average daily census at 133.5, with SNF at 51.5 residents daily and ALF at 82 residents daily. The primary income or revenue for a long-term care facility is derived from charges for each day the resident is at the facility. The actual rate of reimbursement will vary by the particular payer source for which the resident is eligible. During one spell of illness (stay), a resident could be in several different pay classes. For example, the resident may be admitted for skilled rehabilitation care, which is paid for under Medicare for a limited number of days. After that, the resident could use their own sources (private pay) until they are eligible for Medicaid. As the payer source changes, the patient day is captured under that payer source. A resident is classified in only one payer source per day. As detailed in exhibit 15.6, the patient per day (PPD) rate ranges from a low of $192.75 for Medicaid to a high of $505.35 for Medicare. Rates vary between payer sources. There is a direct correlation between services provided and charges for each pay category. Some rate limitations are in place because of negotiated pricing, value-based purchasing programs, or federal or state budget limitations. The payer mix for a facility is critical to the ability to provide services. Projected revenues at WMRC are based on the previous year of operations. For this budget period, average SNF revenue is projected at $264.01 PPD based on historical data. EXHIBIT 15.6 Skilled Nursing Facility Payer Mix

Payer Type

Annual Patient Days

% of Total

PPD Rate

Private

3,757

20.0%

360.00

Medicare

1,789

9.5%

505.35

Medicaid

7,839

41.7%

192.75

HMO

5,229

27.8%

216.00

LTCI

186

1.0%

357.00

18,800

100.0%

Total SNF Days

—

PPD: per patient day; HMO: health maintenance organization; LTCI: long-term care insurance; SNF: skilled nursing facility.

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Total Operating Expenses

$9,492,428.00

Total Nonoperating Expenses

$2,090,212.00

Administration and General

EXHIBIT 15.7 Operating Expense Budget

$371,578.00

Payroll Related Costs

$1,116,413.00

Dietary

$1,349,211.00

Maintenance

431

$429,491.00

Laundry

$80,853.00

Housekeeping

$352,746.00 $1,926,275.00

Nursing Social Services

$100,656.00

Activity

$317,887.00

There are two general types of costs or expenses—fixed (or uncontrollable) and variable (or controllable). Management cannot adjust fixed costs, but they do have the ability to adjust variable costs. Examples of fixed costs in long-term care facilities include utilities, property tax, insurance, and professional fees. Examples of variable costs are salaries, supplies, resident care supplies, raw food, therapy supplies, activity supplies, and medications. In preparing the budget for the current year, the administrator developed an operating expense budget that includes the data presented in exhibit 15.7. The data include both SNF and ALF operations. The final budget has a projected annualized profit margin of 0.76 percent. An operating budget is a financial plan projected for a set time period based on certain assumptions. During the fiscal year, there may be situations that necessitate modification of department budgets. Three months into the budget year, the administrator is notified that the state Medicaid program will reduce reimbursement by 10 percent in 30 days because of state budget shortfalls. This announcement materially affects the basis of the operating budget for WMRC.

C a s e S t u d y Q u e st i o n s 1. How much annual revenue will WMRC potentially lose by this cost reduction? 2. What are ways that the administrator can adjust operating expenses to offset this loss without sacrificing quality of care or services? 3. How might changes in payer mix might be utilized to offset the loss of Medicaid revenue? Copying and distribution of this PDF is prohibited without written permission. For permission, please contact Copyright Clearance Center at www.copyright.com.

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References AARP. 2022. “Tax Tips for Family Caregivers.” Updated March 7. www.aarp.org/caregiving/ financial-legal/info-2017/tax-tips-family-caregivers.html. Bowers, L. A. 2020. “Second-Quarter Senior Housing Occupancy Rate Is Lowest on Record, NIC Says.” McKnight’s Senior Living. Published July 10. www.mcknightsseniorliving.com/home/ news/second-quarter-senior-housing-occupancy-rate-is-lowest-on-record-nic-says/. Campbell, J. C., N. Ikegami, and M. J. Gibson. 2010. “Lessons from Public Long-Term Care Insurance in Germany and Japan.” Health Affairs 29 (1): 87–95. Centers for Medicare & Medicaid Services (CMS). 2022a. “Cost Reports.” Modified April 22. www.cms.gov/Research-Statistics-Data-and-Systems/Downloadable-Public-Use-Files/ Cost-Reports. ———. 2022b. “Independence at Home Demonstration.” Updated July 20. https://innovation.cms.gov/innovation-models/independence-at-home. ———. 2021a. “Medicare Fee for Service Recovery Audit Program.” Modified December 1. www.cms.gov/Research-Statistics-Data-and-Systems/Monitoring-Programs/ Medicare-FFS-Compliance-Programs/Recovery-Audit-Program. ———. 2021b. “Patient Driven Payment Model.” Modified December 1. www.cms.gov/ Medicare/Medicare-Fee-for-Service-Payment/SNFPPS/PDPM. ———. 2021c. “Qualified Medicare Beneficiary (QMB) Program.” Modified December 1. www.cms.gov/Medicare-Medicaid-Coordination/Medicare-and-Medicaid-Coordination/ Medicare-Medicaid-Coordination-Office/QMB. CMS Medicare Learning Network. 2022. SNF PPS: Patient Driven Payment Model. Accessed July 29. www.cms.gov/Medicare/Medicare-Fee-for-Service-Payment/SNFPPS/Downloads/MLN_CalL_PDPM_Presentation_508.pdf. Congress.gov. 2020. H.R. 748 [Coronavirus Aid, Relief, and Economic Security Act]. Accessed August 7. www.congress.gov/116/bills/hr748/BILLS-116hr748enr.pdf. Copying and distribution of this PDF is prohibited without written permission. For permission, please contact Copyright Clearance Center at www.copyright.com.

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Congressional Research Service (CRS). 2022. Who Pays for Long-Term Services and Supports? Report no. IF10343. Updated June 15. https://crsreports.congress.gov/product/ pdf/IF/IF10343. ———. 2020. Long-Term Care Insurance: Overview. Report no. IF11614. Published August 6. https://crsreports.congress.gov/product/pdf/IF/IF11614. Eghrari, M. 2014. “The Medicaid Look Back Period Explained.” Forbes. Published August 1. www. forbes.com/sites/markeghrari/2014/08/01/the-medicaid-look-back-period-explained. Favreault, M., and J. Dey. 2015. “Long-Term Services and Supports for Older Americans: Risks and Financing Research Brief.” Office of the Assistant Secretary for Planning and Evaluation, US Department of Health and Human Services. Published July 1. https:// aspe.hhs.gov/basic-report/long-term-services-and-supports-older-americans-risksandfinancing-research-brief (content no longer available). Flynn, M. 2020. “In PDPM’s First Three Months, ‘Generally Everyone’ Netted Payment Increases.” Skilled Nursing News. Published January 23. https://skillednursingnews.com/2020/01/ in-pdpms-first-three-months-generally-everyone-netted-payment-increases/. He, Y., and J. Gokhale. 2022. “Projecting Medicaid’s Long-Term Care Expenditures.” Healthcare (blog), Penn Wharton Budget Model. Published March 9. https://budgetmodel.wharton.upenn.edu/issues/2022/3/9/projecting-medicaids-long-term-care-expenditures. Internal Revenue Service (IRS). 2022. “Frequently Asked Questions for Seniors: Are the Proceeds I Receive from a Reverse Mortgage Taxable to Me?” Updated April 20. www.irs. gov/individuals/seniors-retirees/frequently-asked-questions-for-seniors. Jeon, B., and S. Kwon. 2017. “Health and Long-Term Care Systems for Older People in the Republic of Korea: Policy Challenges and Lessons.” Health Systems & Reform 3 (3): 214– 23. https://doi.org/10.1080/23288604.2017.1345052. Kaiser Family Foundation. 2019. Medicaid in the United States Fact Sheet. Published October. http://files.kff.org/attachment/fact-sheet-medicaid-state-US.

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Mastrangelo, K. 2015. “Opportunities for Nursing Homes: Top 10 Tools for Success.” Provider. Published September 25. www.providermagazine.com/columns/Pages/2015/ Opportunities-For-Nursing-Homes-Top-Ten-Tools-For-Success.aspx (content no longer available). Medicaid.gov. 2022a.“Community First Choice (CFC) 1915 (k).” Accessed June 1. www. medicaid.gov/medicaid/home-community-based-services/home-community-basedservices-authorities/community-first-choice-cfc-1915-k/index.html. ———. 2022b. “Money Follows the Person.” Accessed June 1. www.medicaid.gov/medicaid/long-term-services-supports/money-follows-person/index.html. Medicare.gov 2022a. “Costs in the Coverage Gap.” Accessed July 11. www.medicare.gov/ drug-coverage-part-d/costs-for-medicare-drug-coverage/costs-in-the-coverage-gap. ———. 2022b. “Medigap Costs.” Accessed July 11. www.medicare.gov/supplements-other-insurance/whats-medicare-supplement-insurance-medigap/ medigap-costs. Medicare Payment Advisory Commission (MedPAC). 2022. Report to the Congress: Medicare Payment Policy. www.medpac.gov/wp-content/uploads/2022/03/Mar22_MedPAC_ ReportToCongress_SEC.pdf. Miller, E. A. 2012. “The Affordable Care Act and Long-Term Care: Comprehensive Reform or Just Tinkering Around the Edges?” Journal of Aging & Social Policy 24 (2): 101–17. Milstein, E., and D. Wessel. 2021. “What Did the Fed Do in Response to the COVID-19 Crisis?” Brookings Institute. Published December 17. www.brookings.edu/research/ fed-response-to-covid19/. Muhlestein, D., W. K. Bleser, R. S. Saunders, and M. B. McClellan. 2021. “All-Payer Spread of ACOS and Value-Based Payment Models in 2021: The Crossroads and Future of ValueBased Care.” Health Affairs Forefront (blog). Published June 17. www.healthaffairs.org/ do/10.1377/forefront.20210609.824799/full/.

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Musumeci, M. B. 2020. “How Are States Supporting Medicaid Home and Community-Based Services During the COVID-19 Crisis?” Kaiser Family Foundation. Published May 5. www. kff.org/coronavirus-covid-19/issue-brief/how-are-states-supporting-medicaid-homeand-community-based-services-during-the-covid-19-crisis/. National Association of Insurance Commissioners (NAIC). 2019. CIPR Program: The State of Long-Term Care Insurance. Published December. https://content.naic.org/sites/default/ files/inline-files/2019_CIPR_LTCI%20Brief.pdf. National Conference of State Legislatures. 2022. A Guide to Long-Term Care for State Policy Makers: The Long-Term Care Partnership Program. Accessed July 11. www.ncsl.org/print/ health/partnershipltc.pdf. National Investment Center for Seniors Housing and Care (NIC). 2020. “Decline in Skilled Nursing Occupancy Continues Due to COVID-19 Pandemic.” News release, July 7. www.nic.org/ news-press/decline-in-skilled-nursing-occupancy-continues-due-to-covid-19-pandemic. Program for Evaluating Payment Patterns Electronic Report (PEPPER). 2022. “About PEPPER.” Accessed July 11. https://pepper.cbrpepper.org/PEPPER. Reinhard, S. C., L. F. Feinberg, A. Houser, R. Choula, and M. Evans. 2019. Valuing the Invaluable: 2019 Update. AARP Public Policy Institute. Published November. www.aarp.org/ content/dam/aarp/ppi/2019/11/valuing-the-invaluable-2019-update-charting-a-pathforward.doi.10.26419-2Fppi.00082.001.pdf. Rodeck, D., and B. Curry. 2020. “Retirement Basics: What Is an Annuity?” Forbes Advisor. Updated June 29. www.forbes.com/advisor/retirement/what-is-an-annuity. Sammer, J. 2019. “The Benefits of Long-Term Care Insurance.” HR Magazine. Published February 27. www.shrm.org/hr-today/news/hr-magazine/spring2019/pages/benefitsof-long-term-care-insurance.aspx. Silvestrini, E. 2022. “Medicaid Annuity.” Annuity.org. Updated July 22. www.annuity.org/ retirement/health-care-costs/medicaid-annuity.

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Title 42—The Public Health and Welfare. 2010. 42 USC §1396. www.govinfo.gov/content/ pkg/USCODE-2010-title42/pdf/USCODE-2010-title42-chap7-subchapXIX-sec1396p.pdf. Watts, M. O., M. B. Musumeci, and P. Chidambaram. 2020. “Medicaid Home and Community-Based Services Enrollment and Spending.” Issue Brief. Kaiser Family Foundation. Published February 4. www.kff.org/medicaid/issue-brief/ medicaid-home-and-community-based-services-enrollment-and-spending/. Watts, M. O., M. B. Musumeci, and E. Reaves. 2013. How Is the Affordable Care Act Leading to Changes in Medicaid Long-Term Services and Supports (LTSS) Today? State Adoption of Six LTSS Options. Policy Brief, Kaiser Commission on Medicaid and the Uninsured. Kaiser Family Foundation. Published April 1. www.kff.org/wp-content/ uploads/2013/04/8079-02.pdf.

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CHAPTER 16

RISK MANAGEMENT, QUALITY, AND SAFETY IN LONG-TERM CARE Cyrus Y. Engineer, DrPH, and Mary Helen McSweeney-Feld, PhD

Learning Objectives After completing this chapter, you should be able to ➤➤ define risk and risk management for long-term services and supports, and their connection to quality and safety principles in long-term care organizations; ➤➤ define quality and describe its historical development as a management tool in business settings; ➤➤ define healthcare quality and discuss the quality tools used in long-term care organizations; ➤➤ describe various quality improvement models and applications; ➤➤ describe federal government reporting requirements for quality outcomes in long-term care communities in the United States; and ➤➤ apply principles of resident safety in long-term care organizations.

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438

quality A predictable degree of uniformity and dependability, based on a standard suited to customer needs.

safety A process or structure that reduces the probability of an adverse event.

risk management A process that assesses individual risk events in terms of impact on overall organizational risk. Risk management helps manage risk proactively by minimizing threats and maximizing outcomes.

D i m e n s i o n s o f L o n g - Te r m C a r e M a n a g e m e n t

The importance of quality and safety in long-term care has grown significantly in recent years, supported by regulatory changes requiring the implementation of quality assurance and performance improvement programs in residential long-term care communities as well as home and community based services (HCBS). Assessment of the risks involved in assurance of quality and safety for long-term care providers has also increased in importance, necessitating effective risk management programs for all segments of the long-term care industry. The mitigation of these risks requires protocols for providers such as hiring the right people and requiring background checks, having policies and procedures in place, and providing ongoing staff training and resources to maintain regulatory standards (Moorcraft 2020). With the onset of the COVID-19 pandemic, the urgency of keeping residents of long-term care communities and consumers of community-based services safe while providing consistent quality of care was challenging. Infection control planning and controls were developed and escalated as the scope of needs in the pandemic continued to grow (Moore 2021). Swift implementation of COVID-19 health and safety standard procedures helped protect consumers and patients across long-term services and supports (LTSS). Understanding the basics of quality and safety in all types of healthcare settings, and their connection to risk management planning and protocols, has now become a mandatory, not optional, requirement for all long-term care providers. W. Edwards Deming, a prominent leader in quality improvement, defined quality as a predictable degree of uniformity and dependability, with a standard suited to the needs of a customer (Chandrupatla 2009). Deming stated, “If you can’t describe what you are doing as a process, then you don’t know what you’re doing” (Gorenflo and Moran 2022). A focus on quality can help you identify whether products and services meet the needs and expectations of the customers who seek value in them. In many sectors, the terms total quality management, continuous quality improvement, and quality improvement are used interchangeably; each describes a structured organizational process for improving quality and efficiency (McLaughlin and Kaluzny 1999). To ensure quality, safety must also take priority. Safety is a concept defined by the Agency for Healthcare Research and Quality (AHRQ) as a type of process or structure that reduces the probability of an adverse event (Shojania et al. 2001). If the risks associated with management of quality and safety are to be minimized, the cost of those episodes must be assessed and mitigated through an effective risk ­management program. In this way, any probabilities of the continuity of a business being interrupted; harm or injuries impacting consumers, residents, or staff; or other adverse events can be minimized. This chapter begins by outlining the elements of a risk management program, and how they lay the foundation for quality and safety principles in LTSS. It then explores the concept of quality, starting from its origins in manufacturing, where it emphasized elimination of defects and waste, and continuing through to its adoption in the healthcare sector. The last portion of the chapter examines quality, specifically in long-term care settings, with an overview of historical perspectives, current practices, and what lies ahead. Copying and distribution of this PDF is prohibited without written permission. For permission, please contact Copyright Clearance Center at www.copyright.com.

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R i s k M a n a g em e n t P r i n c i pl es Risk management is focused on identifying and analyzing problems, or risks, for an organization and providing ways to minimize losses from those risks, especially any lawsuits for a long-term care provider that could arise from adverse events. The five steps of risk management include the following (Alam 2016): 1. Evaluating the context (where the risk is taking place); 2. Identifying the risks; 3. Analyzing the risks; 4. Evaluating the risks; and 5. Managing the risks. These risks could be clinical, such as falls or development of pressure ulcers; professional, such as breach of duty of a healthcare provider employed by an organization; or general, such as elopement caused by an organization neglecting to provide safe and appropriate care and service. Systematic approaches to identifying the underlying causes of adverse occurrences and taking steps to modify processes and prevent future losses can include quality management methods such as root cause analysis and tools such as a fishbone diagram (Alam 2016). Long-term care providers should have an ongoing risk management program that continually collects reliable data and assesses information about new risks, such as loss of business operations or cybersecurity breaches of health information management systems. An organization’s emergency preparedness plan can also be used to test and drill responses to new developments and to provide a retrospective view of what went wrong (Wildberger 2021). A healthcare provider may obtain specialized professional liability insurance to reduce the costs of any unanticipated risks, especially the cost of lawsuits and other litigation. Having a staff member trained in risk management can also help ensure consistent operations. Together, these risk management strategies establish a consistent basis for any quality and safety initiatives taken by long-term care providers.

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The origins of quality improvement can be linked to the twentieth-century work of several US contributors: Walter A. Shewhart, W. Edwards Deming, Joseph M. Juran, Armand V. Feigenbaum, and Philip B. Crosby (McLaughlin and Kaluzny 1999). The study of quality began in factories during the 1950s and focused on improving the individual worker’s efficiency. Shewhart, considered the father of modern quality control, was one of the first to be published in the field. He is most widely recognized for developing statistical process control and the plan–do–check–act (PDCA) cycle, both of which are still used today. The PDCA Copying and distribution of this PDF is prohibited without written permission. For permission, please contact Copyright Clearance Center at www.copyright.com.

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cycle, also called the Shewhart cycle, combines management thinking with statistical analysis (Best and Neuhauser 2006; Quality Gurus 2018e). When Shewhart worked at Hawthorne Plant in Cicero, Illinois, he met Deming and Juran, both of whom would go on to champion his methods in other fields (Best and Neuhauser 2006). Shewhart, while working for Bell Laboratories, also promoted the idea that price was not an indication of value. Deming, an American mathematical physicist, worked in Japan during the 1950s to help rebuild the country’s economy after World War II. Although the Japanese implemented Deming’s processes in the 1950s, US industries did not adopt them until the 1980s, after Japan’s competitive edge started to threaten US businesses (Dunn 2021; Saunders and Saunders 1994). Deming also worked as a consultant to a variety of companies, including Ford Motor Company, Xerox, and Florida Power and Light. He was a proponent of statistical process control (SPC) based on the work by Shewhart. According to Deming, quality can be defined by what customers want and are willing to pay for, and building quality into a process is less expensive than attempting to eliminate defects after the fact (Saunders and Saunders 1994). Juran is known for emphasizing the management aspect of quality control. His Quality Control Handbook, published in 1951, introduced the idea that quality control should be conducted as a central part of the management function (Nofal, Omaim, and Zairi 2005). Juran believed that delegating quality control issues to staff and removing them from management had negative effects on overall quality. Under such an approach, no one in the organization would feel responsible for quality or quality improvement. Juran’s approach to quality control is based on four main principles: (1) quality is the responsibility of management; (2) a policy on quality should be established; (3) quality goals should be established; and (4) once goals have been established, management should provide the resources needed to accomplish them (Nofal, Omaim, and Zairi 2005). Feigenbaum, while serving as head of quality control services at General Electric (GE) in the 1960s and 1970s, developed and implemented total quality controls and quality management. His book Total Quality Control, published in 1961, introduced the idea that all departments are responsible for achieving quality (Nofal, Omaim, and Zairi 2005; Quality Gurus 2018a). His contributions to the field can be summarized into two principles: (1) quality is the responsibility of everyone, from the unskilled worker to upperlevel management, and (2) costs must be minimized by a quality improvement program (Nofal, Omaim, and Zairi 2005). Crosby saw quality improvement from a slightly different perspective, whereby he focused on the concept of “zero defects” (McLaughlin and Kaluzny 1999). According to Crosby, “Quality is free. It is not a gift, but it is free. What costs money were the unquality things—all the actions that involve not doing jobs right the first time” (Nofal, Omaim, and Zairi 2005, 8). This idea led to his book Quality Is Free, published in 1979. Crosby asserted that quality could be described and achieved by adhering to what he described as the four “absolute” requirements of quality (Quality Gurus 2018d). Those requirements are shown in exhibit 16.1. Copying and distribution of this PDF is prohibited without written permission. For permission, please contact Copyright Clearance Center at www.copyright.com.

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Do it right the first time (DRIFT).

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EXHIBIT 16.1 Crosby’s Requirements of Quality

Defect prevention is the only acceptable approach to quality control.

Having "zero defects" is the only acceptable performance standard.

Cost of quality is the only true measure of quality.

Source: Adapted from McLaughlin and Kaluzny (1999).

Q u a l it y

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Interest in continuous quality improvement (CQI) began to take shape in the healthcare sector in the early 1990s, driven by the continuous need to improve clinical outcomes and obtain administrative efficiencies. CQI practices were first implemented in healthcare in hospitals and inpatient settings. In these settings, these practices helped monitor procedures and reduced medical errors that could result in malpractice or increased mortality rates (Kritchevsky and Simmons 1991). Total quality management (TQM) has roots in the principles set forth by Deming, Juran, and Feigenbaum (Kaluzny, McLaughlin, and Simpson 1992; Quality Gurus 2018a). TQM is a “participative, systematic approach to planning and implementing a continuous organizational improvement process” (Kaluzny, McLaughlin, and Simpson 1992). It is characterized by its commitment to customer focus, continuous improvement, and teamwork. The TQM concept was not implemented in US industries until the 1980s, but organizations in the healthcare sector soon took notice. About a decade later, TQM in clinical health settings was helping to improve medical, administrative, and clinical care processes. Avedis Donabedian, who came to be known as the father of healthcare quality, identified the need to focus on health care systems to improve quality. His framework focused on the structure of the setting in which care was provided, the process of how care was provided, and the outcomes that were directly associated with the care. Simply put, structure had an effect on process measures, which in turn had an effect on outcome measures. Donabedian’s framework became known as the structure–process–output model (Franklin 2019). Donabedian’s view of structure included such characteristics as physical plants and their support personnel, in the care setting. In the process of care, he focused on whether the patient received the “standard” of requisite care (e.g., beta-blockers on arrival for patients with acute myocardial infarction, smoking cessation counseling for patients

total quality management (TQM) A participative and systematic approach for planning and implementing a continuous improvement process for an organization.

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with congestive heart failure). Donabedian referred to outcome measures as a person’s health status, or change in health status (e.g., mortality and morbidity rates, 30-day readmission rates, rates of nosocomial infections such as bloodstream infections and urinary tract infections). T h e E v ol u t i o n

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Around the turn of the millennium, the Institute of Medicine (IOM) published two major reports, titled To Err Is Human (IOM 2000) and Crossing the Quality Chasm (IOM 2001), that identified significant deficiencies in the quality of US healthcare. The reports documented problems of overuse, misuse, and underuse of healthcare services, all of which contributed to a widening gap between ideal and actual patient care (Bielaszka-DuVernay 2011; IOM 2016). Perhaps the most startling finding from the reports was that between 44,000 and 98,000 inpatient hospital deaths per year were caused by preventable medical errors (Bielaszka-DuVernay 2011; IOM 2000). As a result of these findings, the IOM turned its efforts toward defining healthcare quality more clearly, identifying ways to measure and evaluate quality, and improving access to quality. The IOM defined high-quality care around six specific aims for improvement, and it offered ten principles for redesigning healthcare systems to achieve these aims (IOM 2016). The aims and principles are shown in exhibits 16.2 and 16.3. The IOM (now known as the National Academy of Medicine) and other organizations, including the National Committee for Quality Assurance and the Institute for Healthcare Improvement (IHI), continue to work toward improving quality of care. As introduced in chapter 3, the Triple Aim is a concept developed in 2008 by the IHI in which integrated approaches are applied to simultaneously improve care, improve population health, and EXHIBIT 16.2 Six Specific Aims for Quality Improvement

Safe

Avoiding injuries to patients from the care that is intended to help them

Effective

Providing services based on scientific knowledge to all who could benefit, and refraining from providing services to those not likely to benefit

Patient-➤ centered

Providing care that is respectful of and responsive to individual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions

Timely

Reducing waits and sometimes harmful delays for both those who receive and those who give care

Efficient

Avoiding waste, including waste of equipment, supplies, ideas, and energy

Equitable

Providing care that does not vary in quality because of personal characteristics such as gender, ethnicity, geographic location, and socioeconomic status

Source: IOM (2001).

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1.   Care is based on continuous healing relationships. 2.   Care is customized according to patient needs and values.

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EXHIBIT 16.3 Ten Principles for Redesign

3.   The patient is the source of control. 4.   Knowledge is shared and flows freely. 5.   Decision making is evidence-based. 6.   Safety is a system priority. 7.   Transparency is necessary. 8.   Needs are anticipated. 9.   Waste is continuously decreased. 10.  Cooperation among clinicians is a priority. Source: IOM (2001).

reduce costs per capita (Bodenheimer and Sinsky 2014; IHI 2022b; Itchhaporia 2018). This concept was then expanded to include improving the work life of healthcare providers, both clinicians and staff, with the introduction of the Quadruple Aim (Bodenheimer and Sinsky 2014; Itchhaporia 2018). In addition, a variety of quality-related provisions of the Affordable Care Act are expected to guide further reform. The improvement of quality in healthcare is strongly linked to the improvement of processes. Variation is inherent in every process, but the goal of quality improvement is to ensure process capability and control. Capability is the ability of the process output to meet desired specifications; a process is said to be 100 percent capable if it meets all specifications. Control is usually achieved through a systematic approach that incorporates the quality improvement (QI) tools discussed in the next section. Q u a l i t y I mp r o v e m e n t T ool s

Experts in the quality field recommend using a tool kit comprising seven basic tools that were first emphasized by Kaoru Ishikawa, a professor of engineering at the University of Tokyo (Barber 2022; Quality Gurus 2018c). The tools can provide an objective understanding of the quality problem at hand, its magnitude or severity, its consequences, and potential causes or contributory factors that might be associated systematically. The seven tools and their associated uses are the following (Croteau 2010; Dunn 2021; Tague 2005): 1. Cause-and-effect diagram. Also called a fishbone diagram or Ishikawa diagram, this tool enables QI teams to brainstorm and categorize issues that might have caused or could potentially lead to a problem. The problem

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(effect or outcome) is typically indicated at the head of the fish, and the bones represent categories of contributing factors (e.g., people, money, material, systems) along which are listed proximate causes and the underlying causes related to each proximate cause. One or more of the underlying causes may turn out to be a root cause. 2. Check sheet. In essence, a check sheet is a structured data collection form that is used to sort and group data using check marks, hash marks, or similar symbols to gain a better understanding of a problem. QI teams often use a check sheet when monitoring a process to determine the frequency of problems. 3. Histogram. This tool provides a visual representation (as a bar graph) of the way data are distributed within a range of values and the amount of variation within a given process. Frequency distributions are best observed using this tool, which can allow QI teams to understand distributions, data skew patterns, and outliers. 4. Pareto chart. The Pareto principle, also called the 80/20 rule, suggests that 80 percent of problems or issues (outcomes) are the result of 20 percent of the steps in a process (causes). The Pareto chart illustrates (as a bar graph with the bars in order of frequency from highest to lowest) which causes are most frequent and therefore have the greatest effect; in essence, it allows QI team members to distinguish the “vital few” steps from the “useful many.” By identifying and addressing these vital few steps, a team can achieve significant gains in quality—usually about 80 percent. In this era, when resources are scarce, a Pareto chart enables a QI team to determine what problems to solve and in what order, and thus it is a great tool for prioritizing institutional resources. 5. Control chart. This tool is essentially a run chart—a graph with a single line of data or results occurring at different times for a designated period—with additional upper and lower specification limits. The control chart identifies the type of variation in a process and whether the process is within the specified limits—that is, whether it is statistically in control. Control charts are often used to analyze process performance and change over time. 6. Scatter diagram. This tool displays the correlation—not necessarily the causeand-effect relationship—between two variables. QI teams can use a scatter diagram to plot pairs of numerical data on a graph and assess relationships between variables. The more the clusters of plotted points form a straight line (which could be diagonal, either upward or downward sloping), the stronger

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the correlation between the two variables. If the points are scattered all over the diagram without any clear pattern, the variables are seen to have no correlation. 7. Flowchart. This tool provides a visual depiction of a process and its component steps, including the starting and ending points, decision nodes, and points where data are generated and stored. It uses easily recognizable symbols, such as an oval for the start and end of the process, a rectangular box for an action taken, and a diamond-shaped box for a decision node, with pathways among these steps shown by lines tipped with directional arrows. Making a flowchart helps QI team members understand the key steps in the process—a necessary first step before the process can be improved. A flowchart can also be used to depict the ideal path the process should follow. Depending on the complexity of the process, a flowchart may be a simple high-level illustration containing only the most basic components, or it may be extremely detailed. These seven tools are illustrated in the appendix at the end of this chapter, and they form the quintessential toolbox for team members embarking on quality improvement journeys (Spath 2018). The next section describes a variety of quality improvement models, but nearly all the models can incorporate and benefit from one or more of the seven tools. S e l e c t e d Q u a l i t y I mp r o v e m e n t M o d e l s

Many healthcare organizations use quality improvement models to guide the implementation of their QI processes and interventions. Though many models are available, the following are among the most widely used. Plan–Do–Check–Act

The plan–do–check–act (PDCA) model, sometimes modified as plan–do–study–act (PDSA), offers users a systematic, flexible, and straightforward approach to QI. As noted earlier, the PDCA cycle is based on work by Walter A. Shewhart and was made popular by W. Edwards Deming (Quality Gurus 2018b, 2018e). It has roots in the scientific method, as it involves developing, testing, and analyzing hypotheses (Gorenflo and Moran 2022). Step one of the cycle, plan, focuses on identifying an opportunity for improvement and then developing a plan to accomplish it. During this stage, any issues or problem areas need to be identified, prioritized, and selected (Tews et al. 2008). Step two of the cycle is do, the stage at which the previously identified action plan is implemented. Additional activities of this step may include collecting data, documenting observations, and addressing

plan–do–check–act (PDCA) A quality improvement model that involves developing, testing, and analyzing hypotheses using four steps: plan, do, check, and act. The cycle is sometimes used in modified form as a plan–do–study–act (PDSA) model.

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EXHIBIT 16.4 PDCA Cycle Act Adopt and standardize the change

Check Analyze data; determine whether the plan or test was successful

Plan Identify a problem or plan a change

Do Implement the plan; document observations and issues

Sources: Adapted from Gorenflo and Moran (2022); Tews et al. (2008).

any issues in the process. Step three, check (or study), involves analyzing the effect of the intervention implemented during step two, with the primary objective of determining whether the intervention was successful. The final step in the cycle, act, is where the team decides whether to standardize the new improvement, to adjust the intervention and retest it, or to abandon the project altogether. The decisions made in step four are based on data collected in the earlier steps (Gorenflo and Moran 2022; Tews et al. 2008). Exhibit 16.4 depicts the PDCA cycle, with a brief description of each step. DMAIR

A newer QI model, similar to PDCA in that it defines a continuous cycle of quality improvement, is a five-step approach known as DMAIR—design, measure, assess, improve, redesign (Barber 2022; Dunn 2021). Step one, design, attempts to understand the purpose of the process being examined and how that process works, including who is involved in it. The process steps may be identified through use of a flowchart. Step two, measure, determines what parts of the process are being measured and whether those measurements indicate a need for improvement. Step three, assess, attempts to ascertain whether the process is efficient and whether the results can be improved. Step four, improve, is the point at which, based on the assessment, changes are identified and implemented to improve the process. Step five, redesign, defines and communicates the revised process to everyone involved and

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establishes measures to gauge whether the improvements have been accomplished. If it turns out that they have not, then the DMAIR cycle begins again. Six Sigma

Six Sigma was developed at Motorola in the mid-1980s as a way to improve working systems. It measures quality in terms of defect rates, with a target rate of no more than 3.4 defects per million opportunities, or six standard deviations from the mean—which is the source of the name Six Sigma (DelliFraine, Langabeer, and Nembhard 2010). Six Sigma’s primary focus is customer satisfaction, and it operates under the premise that the customer’s expectations are what define quality (DelliFraine, Langabeer, and Nembhard 2010; Thomsett 2005). In a healthcare setting, Six Sigma can be used to address customer satisfaction, improve workforce efficiency, and reduce costs (DelliFraine, Langabeer, and Nembhard 2010). Six Sigma applies the scientific method in four steps: (1) observe and define the problem; (2) develop a hypothesis; (3) determine the changes expected, and (4) test the new process to see whether it solved the problem (Thomsett 2005). More recently the rigorously scientific Six Sigma approach has been blended with the idea of a cycle of quality resembling DMAIR to create a five-step approach laid out as DMAIC—define, measure, analyze, improve, and control (Barber 2022; Croteau 2010; Dunn 2021). Step one, define, answers the basic question, “What is the problem?” A team is formed to address this problem, and a project charter is written. This step ensures that the team’s work stays within the scope of the project. Step two, measure, attempts to determine the extent of the problem as the team collects baseline data and establishes key measures. Step three, analyze, leads the team to investigate the circumstances under which the problem occurred, using statistical analysis tools (such as those described earlier in this chapter) to analyze the data and study the process to determine the underlying causes. Step four, improve, is the point at which the team develops solutions to the problem that are then evaluated, refined, and implemented. Step five, control, recognizes that the solution will not be effective unless it is sustained, and thus the improved process is monitored and, if needed, adjusted to maintain the desired level of quality. Lean

Lean, originally started at Toyota, relies on creating standardized processes to provide the best quality services as efficiently as possible. At the core of Lean is the elimination of waste. According to the Lean model, waste comes from the following areas or activities: (1) overproduction, (2) inventory, (3) transportation, (4) motion, (5) overprocessing, (6) defects, (7) waiting, and (8) underuse of staff (Teich and Faddoul 2013). Lean is about performing minor tasks better in order to create value through the collective effect of small improvements. When used in a healthcare setting, Lean is “an organization’s cultural commitment

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to applying the scientific method to designing, performing, and continuously improving the work delivered by teams of people, leading to measurably better value for patients and other stakeholders” (Toussaint and Berry 2013, 75). Lean and Six Sigma principles can be combined to address the reduction of both waste and defects. Lean Sigma, a combination of the two methodologies, is widely used in healthcare. The Joint Commission Center for Transforming Healthcare (2022) promotes a methodology developed by The Joint Commission called Robust Process Improvement, which incorporates Lean, Six Sigma, and change management (a systematic approach that prepares an organization to accept, implement, and sustain the improved processes). Baldrige Performance Excellence Program

The Malcolm Baldrige National Quality Improvement Act, passed by the US Congress on January 6, 1987, had two main objectives: (1) to establish the Malcolm Baldrige National Quality Award program, and (2) to disseminate QI strategies, techniques, and lessons learned (Best and Neuhauser 2011). The Baldrige Award is given annually to organizations that have demonstrated performance excellence, and the award criteria provide excellent guidelines for the practical application of QI. Initially, the Baldrige Award program was aimed at businesses; however, healthcare awards emerged in 2002, and awards for nonprofit organizations followed in 2007 (Best and Neuhauser 2011). According to the National Institute of Standards and Technology (NIST 2021), the Baldrige Excellence Framework for Health Care “is a nonprescriptive framework that empowers your organization to reach its goals, improve results, and become more competitive. It incorporates proven practices on current leadership and management issues into a set of questions that help you manage all the components of your organization as a unified whole.” Baldrige Health Care Criteria are grouped into seven categories representing key areas of a healthcare organization: (1) Leadership; (2) Strategy; (3) Customers; (4) Measurement, Analysis, and Knowledge Management; (5) Workforce; (6) Operations; and (7) Results (NIST 2021). The criteria can be adapted to suit the needs of the organizations using them, and organizations can choose the most suitable tools or approaches for facilitating QI (NIST 2019). Advantages of the Baldrige model include its systematic approach, the adaptability of the framework and criteria, and the use of organizational goals as the basis for measurement (Best and Neuhauser 2011; Dean and Bowen 1994). Organizations wishing to be considered for a Baldrige Award must submit an application showing they meet key criteria and demonstrate exceptional organizational results linked to their mission, vision, and values (NIST 2021). Examiners typically review the submissions, conduct site visits, and score each organization’s performance. Healthcare organizations have often used the Baldrige process to examine internal processes critical to high-performance organizational results. Copying and distribution of this PDF is prohibited without written permission. For permission, please contact Copyright Clearance Center at www.copyright.com.

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Since the 1980s, government regulations, diverse market options, rising consumer expectations, and other developments have brought increased attention to the use of quality standards in the area of long-term care. Three pivotal events were the passage of the Nursing Home Reform Act of 1987, the development of the Minimum Data Set in 1998, and changes in the Medicare Requirements for Participation in 2016 that introduced a new version of the Federal Long-Term Care Survey for skilled nursing homes. Because of the strict regulatory environment for nursing facilities in particular, this section of the chapter emphasizes quality initiatives within that spectrum of LTSS. The Nursing Home Reform Act

The federal Nursing Home Reform Act, from the Omnibus Budget Reconciliation Act of 1987 (also known as OBRA 1987, as discussed in greater detail in chapters 2 and 14), created a national set of standards for the care of people living in certified nursing facilities. The standards emphasized a resident’s quality of life in addition to quality of care. Enactment of OBRA 1987 required nursing facilities to honor essential resident rights and to provide the highest practicable level of physical, mental, and psychosocial well-being for residents (Kelly 1989). Essential resident rights included the statement that residents have the right to be free from physical and chemical restraints that are not required for the treatment of some medical condition (Center for Medicaid and State Operations / Survey and Certification Group 2008). Although OBRA 1987 was not enforced until 1995, it had an immediate positive effect on resident quality of life. It is now recognized as one of the first attempts to define, measure, and report quality in long-term care. A 2008 report released by the Centers for Medicare & Medicaid Services (CMS) illustrated the act’s impact. It showed that the use of daily physical restraints (e.g., belts, wrist ties, bands, vests) on residents in nursing facilities had decreased from 21 percent in 1991 to less than 5 percent in 2008 (Center for Medicaid and State Operations / Survey and Certified Group 2008; CMS 2017). Why is the reduction in the use of physical restraints considered a reflection of quality improvement in long-term care? According to the Agency for Healthcare Research and Quality (AHRQ 2010), overuse of physical restraints can cause residents to become weak, lose daily functioning abilities, and become prone to such issues as pressure ulcers, chronic constipation or incontinence, and emotional problems. Minimum Data Set

As discussed in greater detail in chapter 14, the development of the Minimum Data Set (MDS) was another landmark moment in addressing the quality of care in nursing facilities. When it was automated in 1998, the MDS became the first tool with which the federal government could consistently collect data to assess quality through standardized measures. Copying and distribution of this PDF is prohibited without written permission. For permission, please contact Copyright Clearance Center at www.copyright.com.

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The MDS is a required component of the Resident Assessment Instrument (RAI) that must be completed by nursing facility staff and electronically submitted to an online database for the facility to receive federal reimbursement for services provided (HCPro 2014). The MDS transitioned to Version 3.0 in 2012, where an expanded number of quality measures were added. This database also drives quality measures reporting for nursing facilities, discussed in the next section. Medicare Requirements for Participation for Long-Term Care Facilities

On October 4, 2016, CMS issued a final rule titled “Medicare and Medicaid Programs; Reform of Requirements for Long-Term Care Facilities” (CMS 2016). The October 2016 final rule significantly revised the requirements long-term care facilities must meet to participate in the Medicare and Medicaid programs (CMS 2021). The new Requirements for Participation mandated that all skilled nursing facilities have a comprehensive, data-driven, Quality Assurance and Performance Improvement (QAPI) program focused on the indicators of the outcomes of care and quality of life (CMS 2021). More details on the QAPI program are provided in the next section. Quality Activities

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Many components of the long-term care delivery system have quality reporting requirements because of their participation in the Medicare program. Home health agencies use the Outcome and Assessment Information Set (OASIS) and the Home Health Care Consumer Assessment of Healthcare Providers and Systems Survey (CAHPS) data for their quality reporting (CMS 2022b). Hospice programs are required by the Social Security Act to participate in the Hospice Quality Reporting Program (HQRP), and additional quality reporting documents exist for long-term care hospitals (CMS 2022c, 2022d). Some quality and reporting initiatives in long-term care are mandatory, whereas others are voluntary. Mandatory Reporting

Required quality measures for long-term care providers can be found in the Medicare Care Compare site that was established to provide centralized quality measures reporting for all Medicare certified health care providers (CMS 2020, 2022a). Certified nursing facilities can be found on the Nursing Home Compare reporting module (Medicare.gov 2022). Consumers can use the site to find a variety of information about a nursing facility, including general information, fire safety and health inspection results, quality measures, and staffing ratings. Similar Compare sites exist on the Medicare Care Compare website for certified home care agencies (Home Health Compare) as well as certified hospice providers (Hospice Compare).

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The Nursing Home Compare site scores individual nursing facilities, based on the information collected, on a Five-Star Quality Rating system. Nursing homes with a fivestar rating rank above average in quality of care, whereas nursing homes with one star rank below average (Abt Associates 2014). This system enables potential customers to research the star ratings of nursing facilities just as they would research star ratings of hotels. Quality measures are divided between short-stay and long-stay residents, and they track a variety of chronic health conditions. Recent changes in the Nursing Home Compare and Five-Star Quality Rating System require collection and reporting of staffing and turnover data, as well as health inspection data (CMS 2022a). In 2011, CMS launched a prototype program called Quality Assurance and Performance Improvement (QAPI) aimed at standardizing quality assessment and assurance in skilled nursing facilities (SNFs), or nursing homes. According to CMS (2021), QAPI “takes a systematic, comprehensive, and data-driven approach to maintaining and improving safety and quality in nursing homes while involving all nursing home caregivers in practical and creative problem solving.” (Exhibit 16.5 lists the components of QAPI). QAPI was then introduced into the revised Medicare Conditions of Participation for SNFs in 2016 and appears in the State Operations Manual. This document contains several regulations dealing with quality, but in this chapter, the regulation F865, 483.75 is highlighted (CMS 2017). Compliance requires the following (CMS 2017): Facilities develop, implement and maintain an effective, comprehensive and data-driven QAPI Program that focuses on indicators of care outcomes and quality of life. Each ­facility’s QAPI Program must be ongoing and address the full scope of care and services being provided. The QAPI Program must address all systems of care and management practices including clinical care, quality of life, and resident choice. Each system should reflect the complexities, unique care/services being provided, and utilize best available evidence to define and measure indicators of quality and the facility’s goals. These indicators and goals must be predictive of desired outcomes for residents.

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Quality Assurance and Performance Improvement (QAPI) A CMS-mandated program that takes a systematic, comprehensive, data-driven approach to maintaining and improving safety and quality in nursing homes while involving all nursing home caregivers in practical and creative problem solving.

Performance Improvement Project (PIP) A project that has a

The governing body or the executive leadership team is responsible for the facility’s own QAPI program. Leadership must ensure that the program has adequate resources, sets expectations, and addresses any gaps in the system through corrective actions. Additional regulations pertaining to QAPI programs for nursing homes include F866, for mandatory data collection and monitoring, and F867, for QAPI monitoring activities, whereby a Performance Improvement Project (PIP) is developed to address a quality management problem, measured for success, and tracked for performance improvement (Elizaitis 2019). Several quality management reporting programs for long-term care communities have been developed, such as the INTERACT quality improvement program that focuses on improving the identification, evaluation, and management of acute changes in condition of nursing home residents (Ouslander et al. 2014). Each state is served by

specific written mission to examine a quality management problem on an ongoing basis, collect data, and use measurement tools and a problem-solving analysis to prepare and present results to a QAPI committee as well as other parties in the nursing home.

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EXHIBIT 16.5 The Components of QAPI

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Quality Assurance

Performance Improvement

Motivation

Measuring compliance with standards

Continuously improving processes to meet standards

Means

Inspection

Prevention

Attitude

Required, reactive

Chosen, proactive

Focus

Outliers: “bad apple” individuals

Processes or systems

Scope

Medical provider

Resident care

Responsibility

Few

All QA + PI = QAPI

Source: CMS (2022e), 2.

a quality improvement organization (QIO) that offers resources and tools for nursing homes in their QAPI implementation and refinement (CMS 2022f; Quality Improvement Organizations 2022). To summarize, CMS has defined five elements for framing a QAPI program in nursing homes: (1) the program must have design and scope; (2) governance and leadership must be involved; (3) a process for feedback and systems for data collection and monitoring must be in place; (4) performance improvement projects must be part of the QAPI program; and (5) there must be systematic analysis and systematic action as part of the program (CMS 2022e). The QAPI concept has also been applied by CMS to other long-term care providers that participate in Medicare, such as certified home health agencies and certified hospice providers. Home care providers use OASIS and Home Health CAHPS data for their quality reporting (CMS 2022b). The Hospice Quality Reporting Program requires the use of the Hospice Item Set (HIS) data collection tool, and an experience of care survey, the Hospice CAHPS (CMS 2022c). Voluntary Reporting

Several associations and organizations have begun creating systems and award processes to help facilities voluntarily improve their quality of care. The Joint Commission, the major accreditation body for hospitals, has developed an accreditation process for assisted living communities and nursing care centers (Joint Commission 2022a, 2022b). Life plan communities as well as other behavioral health, substance abuse and rehabilitation service providers may select to be accredited by the Commission on Accreditation of Rehabilitation

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Facilities (CARF), an internationally recognized accreditation agency for health and human services providers (CARF International 2022). Since the 1990s, TQM and continuous quality improvement efforts have led to a variety of programs and have been extended beyond nursing homes to other long-term care providers. The American Health Care Association / National Center for Assisted Living (AHCA/ NCAL 2022) has a well-known National Quality Awards Program that uses the core values and criteria of the Baldrige Performance Excellence Program. Member facilities may apply for three progressive levels of awards: Bronze—Commitment to Quality, Silver—Achievement in Quality, or Gold—Excellence in Quality. Each level has distinct rigors and requirements for quality and performance excellence. Applications are judged by trained examiners who provide feedback on opportunities for improvement to support continuous learning. Most long-term care service providers currently use interviews, customer satisfaction surveys, care plan team meetings, and family and resident council meetings to further measure and improve quality of care. These tools provide valuable information to the administrative team, highlighting areas needing improvement that may not be identified with standardized data collection methods. Facilities proactively collect information to formulate specific and measurable plans to address areas of concern. All this information must be included in the QAPI program, including how resident and family input will occur, as well as the PIPs that are part of the QAPI program.

Safety

in

L o n g -T e r m C a r e

Quality and safety are closely related topics in healthcare, and long-term care organizations must implement programs to monitor not only quality but also safety. In 2014, a study by the US Office of the Inspector General (Levinson 2014) found that 22 percent of Medicare beneficiaries in skilled nursing facilities experienced adverse events during their post-acute care stays, and an additional 11 percent experienced temporary harm events during their stays. Physician reviewers found that 59 percent of these events could have been avoided with better care protocols and more resident monitoring. Furthermore, treatment of individuals who returned to the hospital during this period cost the federal Medicare program an estimated $2.8 billion. Because the study indicated a need among nursing home staff for additional information about safety issues, the Office of the Inspector General recommended that facilities compile lists of adverse events related to such areas as medication issues, resident care, and infections. The Institute for Healthcare Improvement has implemented a free, online Basic Certificate in Quality and Safety consisting of 13 modules covering quality management, patient safety, and other foundational concepts required in the management of quality and safety in all types of health care settings (IHI 2022a). The IHI also developed a number of quality and safety management tools for use during the COVID-19 pandemic (IHI 2022c).

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Organizations must also develop a culture of safety within their communities. The TeamSTEPPS Long-Term Care program, developed by AHRQ and the US Department of Defense, is one example of an initiative working toward this goal. TeamSTEPPS aims to improve collaboration and communication in a team-based environment that extends from the initial stages of a concept to the sustainment of positive changes (AHRQ 2022). Safety efforts in long-term care can encompass administrative as well as clinical initiatives. For example, AHRQ’s Falls Management Program is an interdisciplinary initiative working to help communities build a culture of person-centered care through the use of quality management tools and increased staff education on fall risks and prevention strategies (AHRQ 2017). Safety requirements for assisted living communities are dependent on state and local regulations, which may vary considerably between states. Although they do not have to meet CMS regulatory requirements of nursing homes, they must conduct assessments of risks and benefits that meet certain national standards such as fire safety regulations based on the National Fire Protection Association’s Life Safety Code (as discussed in chapter 11), Occupational Safety and Health Administration programs for residents and staff, and disaster preparedness plans for facilities and communities. The range of safety tools, programs, and initiatives that long-term care facilities might employ is extensive. Because the full range of safety tools is too broad to cover in detail within this chapter, our discussion will focus on two of the most commonly used tools applied in long-term care settings: root cause analysis and failure mode and effects analysis. R oo t C a u s e A n a ly s i s root cause analysis (RCA) A process for discovering the fundamental reason a problem occurred and preventing future occurrences.

Root cause analysis (RCA) is a process for identifying the basic or causal factors underlying variation in performance, including the occurrence or possible occurrence of an adverse event (Croteau 2010). RCA has often been described as the process of repeatedly asking “Why?” until you can no longer answer. Doing so will reveal the root cause—a fundamental reason for the failure or inefficiency of a process (Croteau 2010). Healthcare providers often use this method to discover the root cause of a problem that has occurred and to prevent future occurrences. After all, if you do not know why something occurred, how can you hope to prevent it from occurring again? Rooney and Vanden Heuvel (2004) clarified that a root cause analysis does not just identify “what” and “how” something occurred, but also answers the question of “why.” A detailed analysis will effectively evaluate a situation by including information on the event, identifying causal factors, completing a root cause map, and following up with recommendations generated from the root cause (Rooney and Vanden Heuvel 2004). This approach is illustrated in exhibit 16.6. For example, imagine that a resident fell out of bed in their room one evening. If the provider does not ask why, the response might be to simply place an alarm on the resident’s bed. However, if the provider asks why and completes a thorough root cause Copying and distribution of this PDF is prohibited without written permission. For permission, please contact Copyright Clearance Center at www.copyright.com.

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WHAT HAPPENED? Collect data and information.

HOW DID IT HAPPEN? Determine potential causal factors.

455

EXHIBIT 16.6 Root Cause Analysis: What? How? Why?

WHY DID THIS HAPPEN? Identify root causes.

Source: Adapted from Rooney and Vanden Heuvel (2004).

analysis, it might reveal that the real problem was that the resident was trying to turn off a bedside lamp and could not reach the switch, causing them to lose their balance and fall out of bed. This approach offers a much different solution—possibly one as simple as moving the bedside table and lamp closer to the bed. In some instances, RCA can reveal a flaw in an entire process or system that would not have been discovered if the organization had simply blamed one person when an error occurred. To modify our example, suppose that the resident had needed to use the bathroom, required assistance and called for help but received no response, and then attempted to get out of bed unaided and fallen. The organization’s easiest approach to this adverse event would be to blame a nurse who failed to respond to the call. But an RCA could reveal a serious systemic issue, such as understaffing or a problem with the shift change process that would regularly leave residents unattended during that period of caregiver transition. Only by uncovering and addressing the root cause of the problem could effective steps be taken to prevent such an adverse event from happening again.

failure mode and effects analysis (FMEA) A careful, stepwise analysis and consideration of all

Failure Mode

and

E f f e c t s A n a ly s i s

How should healthcare providers handle situations when a potential solution also carries a risk? In other words, how is the decision made to move forward with a treatment or care decision when known risks are involved? The answer is failure mode and effects analysis (FMEA), a careful, stepwise analysis and consideration of all possible steps where failure could occur within a process (the failure modes), the likelihood of failure among the steps, and the potential impact that failure might have on desired outcomes. In essence, FMEA asks, “Is the risk acceptable?”

possible steps where failure could occur within a process (the failure modes), the likelihood of failure among the steps, and the potential impact that failure might have on desired outcomes.

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Whereas RCA is a retrospective approach (i.e., it is used to address a problem that has already occurred), FMEA is a proactive approach (i.e., it is used before a problem occurs); the two are interconnected in that RCA can be used to address the root causes of the failure modes as part of an FMEA-based proactive risk reduction effort (Croteau 2010). An FMEA could also be used in the analyze step of the DMAIC process as part of a Six Sigma performance improvement effort (Dunn 2021). An FMEA can be a conscious decision made after careful consideration or discussion, and sometimes it is not even completed on paper or in a chart. However, in healthcare and specifically long-term care, the actual documentation of FMEA may prove beneficial. Documentation of careful consideration of potential outcomes can often alleviate stressful family situations, help with questions from regulators, or even provide defense for litigation. An example of a long-term care situation requiring a careful FMEA might involve the decision to use side rails (also called bed rails). Side rails are a controversial subject in long-term care. Some people may find them necessary to prevent residents from rolling out of bed, but others argue that their use can actually increase the risk of injury from falls that occur when residents climb over the rails. Additional risks might involve residents becoming trapped between side rails and mattresses or the side rails becoming physical restraints by reducing residents’ mobility. Addressing such an issue requires a careful analysis, which would include an RCA of falls. Although bed rails are marketed as a safety device and have many benefits when used in appropriate situations, they can also present a risk of harm for certain individuals and a decrease in quality of life (Healy et al. 2008).

A L oo k A h e a d Connecting quality outcomes to reimbursement by CMS through value-based purchasing programs has become the norm for skilled nursing facilities and home care agencies, and may come to other sectors of long-term care such as hospice providers in the future. Accountable care organizations (ACOs) are already affecting quality of care by establishing staffing levels, lengths of stay, and, in some cases, clinical pathways based on changes in condition. Organizations hoping to secure these reimbursement options will have to implement and maintain constant quality improvement programs. According to Don Berwick of the Institute for Healthcare Improvement, the COVID-19 pandemic introduced a “new normal” for healthcare providers with six properties of care for durable change: (1) a faster tempo for learning and improvement, (2) value in standards, (3) protection of the workforce, (4) virtual care using telehealth or telemedicine, (5) preparedness for threats, and (5) the realization of inequity in the provision of care (Berwick 2020). New policies and practices must be implemented quickly so that any favorable outcomes can be maintained, especially for the long-term care industry. Linking these policies and

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practices to risk management programs can ensure a proactive approach to quality and safety initiatives. While ACOs integrate organizational and clinical services affecting quality of care, integrated healthcare delivery systems will continue to evolve. Studies are still underway to determine whether integrated healthcare delivery systems are effective at improving quality while reducing cost. The trend seemed certain to continue as reimbursement models demand that organizations work together (Hwang et al. 2013). Long-term care delivery systems must adapt to these changes and partner with other healthcare entities in thoughtful and creative ways to remain viable in the future. Quality initiatives and ongoing improvements in long-term care have led to many positive outcomes for consumers. They have changed the face of long-term care from a reactive to a proactive environment. Today’s organizations are faced with a combination of demands, including expectations of person-centered care, good state and federal survey results, and changes in consumer wants and needs. The long-term care industry is committed to the process of ongoing quality improvement and has been heavily impacted by the effects of the COVID-19 pandemic. Long-term care providers realize that the best way to achieve and maintain excellence is by identifying best practices, understanding what needs to be improved, and being flexible enough to implement new practices to ensure the best outcomes for their clients and residents.

For Discussion 1. Define risk management, and describe how an effective risk management program can ensure quality and safety of long-term care consumers. 2. What are some of the key drivers for improving the quality of care and quality of life for long-term care consumers? 3. Why is it necessary to understand how quality of care can impact reimbursement for services provided? 4. Briefly describe the key features of QAPI. 5. Why is the Minimum Data Set an important tool for both quality of care and financial improvement initiatives in nursing facilities? 6. Compare and contrast quality assurance and performance improvement. 7. Describe the importance of IOM’s six aims for quality improvement. 8. Define overuse, underuse, and misuse, and give an example of each. 9. Why do organizations apply for the Baldrige award? How can the award program lead to improvements in quality? 10. Discuss the PDCA cycle and describe how this tool can be used.

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Case Study: Coumadin Controversy David Rogers, a retired machinist, moved into the Sunset by the Sea life plan community (or continuing care retirement community) in 2019 with his wife, Daniella. Daniella had fallen and had difficulty walking on her own. In September 2021, during a seven-day stay in the hospital, Mr. Rogers was diagnosed with abnormal heart rhythms and given Coumadin (warfarin), a popular blood thinner that could help reduce the risk of stroke. Both the hospital and Mr. Rogers’s doctor instructed Sunset by the Sea to give him a specific test to assess his clotting rate, but the test was never done. Instead, the staff gave him a test intended for patients taking heparin, a different blood thinner. During early October, staff members made notes in Mr. Rogers’s chart about bruising on his body. One entry noted a large bruise on his stomach that was purple in the center and green and yellow on the outside. The nurses reasoned that the bruises must have come from the lift used in transferring him. Mr. Rogers’s daughter Desiree then became concerned that her father had been subjected to mistreatment by some of the staff in the community, and she discussed her concerns with the unit charge nurse on October 12. Mr. Rogers was brought to the emergency room after midnight on October 15 because of bleeding from his gums. In the emergency room, a test showed that his clotting rate was so slow that he might never stop bleeding on his own. The doctors found Mr. Rogers’s bruises so severe and unusual that they asked the hospital to photograph them and report their findings to the administrator of Sunset by the Sea. Desiree Rogers remarked that the nurses must have noticed the bruising, and she asked why they failed to do something about it. At the hospital, doctors gave Mr. Rogers vitamin K in an attempt to counteract the effects of the Coumadin, and he showed consistent improvement. Mr. Rogers was eventually discharged from the hospital back to Sunset by the Sea, with discharge instructions that specifically stated that he needed ongoing testing to monitor his level of Coumadin. The administrator then met the director of nursing to review Mr. Rogers’s case. In that meeting, the director of nursing realized the mistake that had been made in the testing of Mr. Rogers’s blood thinner. She commented to the administrator, “We’re just lucky that Mr. Rogers did not die from our mistake,” and referred the case to the QAPI committee at Sunset by the Sea for further evaluation.

Case Study Questions 1. Describe the event briefly. What safety technique could be used to investigate this event? Discuss the key contributory factors that led to this event. 2. What could the administrator of Sunset by the Sea and the director of nursing have done to respond to the hospital’s report of Mr. Rogers’s bruising issues? What type

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of quality management and safety processes should have been in place to prevent this serious medical error or respond to it once it was identified? Provide a rationale for your interventions. 3. What was the impact of this medical error on Mr. Rogers’s family? 4. How would you know that care has improved at the nursing home and such events can be prevented in the future? Discuss measures that you would track to assess improvements.

A pp e n d i x : S e v e n B a s i c Q u a l i t y T ool s 1. Cause-and-effect diagram / fishbone diagram Environment

Not enough exam rooms

Procedures Disorganized patient files

Too much paperwork

Exam supply cabinet not handy

Medication cabinet is locked; must spend time looking for key

Registration takes too long

Poor maintenance

Unscheduled patients

Long clinic wait times

Patient early for appointment Wheelchairs unavailable

Patient late for appointment

Equipment

Unable to quickly verify insurance

Nurse not available

Doctor not available People

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2. Check sheet X-Ray Film Retrieval Time Check Sheet Retrieval Time

January

February

March

0–15 minutes

15+ minutes

3. Histogram Histogram of Clinical Wait Times 50 45

10 minutes or less

40

21 minutes or more

11–20 minutes

Number of Patients

35 30 25 20 15 10 5 0 Wait Times

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4. Pareto chart Pareto Chart Showing ID Band Problems 100%

32

28

Number Reported

100%

98%

90% 80%

84% 21

21

70% 18

60%

63% 14

12

50% 40%

7

38%

Cumulative Percent

35

30%

2

20%

0 Fastener doesn’t hold

Not enough large sizes

Space for ID too small

Ink smears

Plastic edges tear

5. Control chart Control Chart of Number of Rejected Insurance Claims—Process in Control 80

UCL

Rejected Claims

70 60

Mean

50 40 30

LCL

20 10 0 J

F

M

A

M

J

J

A

S

O

N

D

J

F

M

A

M

J

J

A

S

O

N

D

Month

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Control Chart of Number of Rejected Insurance Claims—Process Not in Control 90 80

UCL

Rejected Claims

70 60

Mean

50 40 30

LCL

20 10 0 J

F

M

A

M

J

J

A

S

O

N

D

J

F

M

A

M

J

J

A

S

O

N

D

Month Note: UCL = upper control limit; LCL = lower control limit.

6. Scatter diagram Scatter Diagram Relationship Patterns

y

y

y

x Positive correlation

x

x Positive correlation may be present

y

No correlation

y

x Negative correlation may be present

x Negative correlation

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Scatter Diagram Showing Relationship Between Two Variables: Computer Response Time and Number of Users Connected 4.5

Response Time in Seconds

4.0 3.5 3.0 2.5 2.0 1.5 1.0 0.5 0 0

5

10

15

20

25

30

35

40

45

Number of Users Connected 7. Flowchart Standard Flowchart Symbols Symbol

Represents The start and end of the process

A task, action, or step in the process

A decision point in the process

A document used in the process

A delay in the process The direction or flow of the process steps Copying and distribution of this PDF is prohibited without written permission. For permission, please contact Copyright Clearance Center at www.copyright.com.

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Detailed Flowchart of the Process of Taking Patient X-Rays Start day routines

Set up for first patient

Get patient from waiting room

Physician order available?

No

Technician gets physician order

Yes Patient undresses; final X-ray machine setup completed

Patient positioned and X-ray taken Technician returns to patient Is X-ray adequate?

No

Yes Patient escorted out by technician

Patient dresses and leaves radiology department

Set up for next patient

Source: Spath (2018).

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References Abt Associates. 2014. Nursing Home Compare Five-Star Quality Rating System: Year Five Report [Public Version]. Published June 16. www.cms.gov/Medicare/Provider-Enrollmentand-Certification/CertificationandComplianc/Downloads/NHC-Year-Five-Report.pdf. Agency for Healthcare Research and Quality (AHRQ). 2022. “TeamSTEPPS: Strategies and Tools to Enhance Performance and Patient Safety.” Accessed July 13. www.ahrq.gov/ teamstepps/index.html. ———. 2017. “The Falls Management Program: A Quality Improvement Initiative for Nursing Facilities.” Updated December. www.ahrq.gov/patient-safety/settings/long-termcare/resource/injuries/fallspx.html. ———. 2010. “Use of Physical Restraints in Nursing Homes Cut by Half in 8 Years.” AHRQ News and Numbers. Published July 14. http://archive.ahrq.gov/news/newsroom/newsand-numbers/071410.html. Alam, A. Y. 2016. “Steps in the Process of Risk Management in Healthcare. “ Journal of Epidemiology and Preventive Medicine 2 (2): 118. American Health Care Association/National Center for Assisted Living (AHCA/NCAL). 2022. “National Quality Award Program.” Accessed July 13. www.ahcancal.org/Quality/ National-Quality-Award-Program/Pages/default.aspx. Barber, A. 2022. “Chapter 13: Performance Appraisal.” SlidePlayer. Accessed July 14. https://slideplayer.com/slide/10848040/. Berwick, D. M. 2020. “COVID-19 Beyond Tomorrow: Choices for the New Normal.” JAMA 323 (21): 2125–26. https://doi.org/10.1001/jama.2020.6949. Best, M., and D. Neuhauser. 2011. “Did a Cowboy Rodeo Champion Create the Best Theory of Quality Improvement? Malcolm Baldrige and His Award.” BMJ Quality & Safety 20 (5): 465–68.

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———. 2006. “Walter A. Shewhart, 1924, and the Hawthorne Factory.” Quality & Safety in Health Care 15 (2): 142–43. Bielaszka-DuVernay, C. 2011. “Improving Quality and Safety.” Health Affairs Health Policy Brief. Published April 15. www.healthaffairs.org/healthpolicybriefs/brief. php?brief_id=45. Bodenheimer, T., and C. Sinsky. 2014. “From Triple to Quadruple Aim: Care of the Patient Requires Care of the Provider.” Annals of Family Medicine 12 (6): 573–76. https://doi. org/10.1370/afm.1713. CARF International. 2022. “Who We Are.” Accessed May 24. www.carf.org/About/ WhoWeAre/. Center for Medicaid and State Operations / Survey and Certification Group. 2008. Freedom from Unnecessary Physical Restraints: Two Decades of National Progress in Nursing Home Care. Centers for Medicare & Medicaid Services. Published November 7. www.hhs. gov/guidance/document/release-report-freedom-unnecessary-physical-restraints-twodecades-national-progress. Centers for Medicare & Medicaid Services (CMS). 2022a. Design for Care Compare Nursing Home Five-Star Quality Rating System: Technical Users’ Guide. Published July. www. cms.gov/Medicare/Provider-Enrollment-and-Certification/CertificationandComplianc/ Downloads/usersguide.pdf. ———. 2022b. “Home Health Quality Reporting Program.” Modified April 19. www.cms.gov/ medicare/quality-initiatives-patient-assessment-instruments/homehealthqualityinits. ———. 2022c. “Hospice Quality Reporting Program.” Modified March 3. www.cms.gov/ medicare/quality-initiatives-patient-assessment-instruments/hospice-quality-reporting. ———. 2022d. “Long-Term Care Hospital (LTCH) Quality Reporting Program (QRP).” Modified April 19. www.cms.gov/medicare/quality-initiatives-patient-assessment-instruments/ ltch-quality-reporting.

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———. 2022e. QAPI at a Glance: A Step by Step Guide to Implementing Quality Assurance and Performance Improvement (QAPI) in Your Nursing Home. Accessed May 24. www.cms.gov/medicare/provider-enrollment-and-certification/qapi/downloads/qapiataglance.pdf. ———. 2022f. “Quality Improvement Organizations: Locate Your QIO.” Accessed July 13. www.qioprogram.org/locate-your-qio. ———. 2021. “QAPI Description and Background.” Modified December 1. www.cms.gov/ Medicare/Provider-Enrollment-and-Certification/QAPI/qapidefinitionife. ———. 2020. “CMS Care Compare Empowers Patients When Making Important Health Care Decisions.” CMS.gov. Press release, September 3. www.cms.gov/newsroom/press-releases/ cms-care-compare-empowers-patients-when-making-important-health-care-decisions ———. 2017. “Appendix PP: Interpretive Guidance to Surveyors of Long Term Care Facilities.” State Operations Manual. Revised November 22. www.cms.gov/Regulations-andGuidance/Guidance/Manuals/downloads/som107ap_pp_guidelines_ltcf.pdf. ———. 2016. Medicare and Medicaid Programs; Reform of Requirements for Long-Term Care Facilities. 85 FR 68688. Document No. 2016-23503. Federal Register, National Archives. Published October 4. www.federalregister.gov/documents/2016/10/04/2016-23503/ medicare-and-medicaid-programs-reform-of-requirements-for-long-term-care-facilities. Chandrupatla, T. R. 2009. Quality and Reliability in Engineering. New York: Cambridge University Press. Croteau, R. J. (ed.). 2010. Root Cause Analysis in Health Care: Tools and Techniques, 4th ed. Oakbrook Terrace, IL: Joint Commission Resources. Dean, J. W., and D. E. Bowen. 1994. “Management Theory and Total Quality: Improving Research and Practice Through Theory Development.” Academy of Management Review 19 (3): 392–418.

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GLOSSARY

ableism: Negative stereotypes, prejudice, or discrimination against individuals on the basis of their physical or cognitive ability. Ableism can be explicit or implicit and expressed on multiple levels. accountable care organizations (ACOs): Networks of healthcare providers, including hospitals, physicians, and others, brought together as a single organization jointly held accountable for patient outcomes, quality of care, risk sharing, and costs. Accountable Health Communities: A model of care that tests whether systematically identifying and addressing the health-related social needs of Medicare and Medicaid beneficiaries through screening, referral, and community navigation services will impact healthcare costs and reduce healthcare service utilization. accreditation: The act of giving credit or recognition to organizations that maintain suitable standards. activities of daily living (ADLs): Basic and routine daily activities such as eating, bathing, dressing, toileting, and walking. A person’s ability to perform ADLs determines the level of long-term care needs. activity-based budgeting: A budgeting approach based on activities that incur costs in the various functional areas of the organization.

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Acute Care for Elders (ACE) unit: An inpatient unit specializing in care for adults aged 65 or older with an acute medical condition requiring hospitalization. Individuals at risk for delirium, dementia, depression, incontinence, or falls, or those requiring large numbers of prescription drugs, are candidates for admission. ADA Amendments Act (ADAAA) of 2008: A US law supplementary to the Americans with Disabilities Act that broadened the definition of disability to an impairment that substantially limits major life activities, where there is a record of such impairment, or the individual is regarded as having such an impairment. Administration for Community Living (ACL): An umbrella agency of the US government that provides services and supports for older adults and individuals with disabilities. Administration on Aging (AoA): A division of the US Department of Health and Human Services responsible for advancing the concerns and interests of older people and their caregivers. administrator: An individual in control of and responsible for an organization’s operations, and a key member of the leadership team. Also known as executive director. admissions coordinator: An individual who manages activities related to the admitting process in skilled nursing that include staffing and collecting medical and insurance information across nursing, medical, and business units or offices. adult day service: A community-based facility for individuals who need supervised care in a safe place outside the home during the daytime but who otherwise remain in their homes. Also called adult day care. Adult Protective Services (APS): A social services program administered by state and local governments that provides assistance to residents of long-term care organizations and adults with disabilities who may be victims of abuse, neglect, or exploitation. It also assists adults who are experiencing difficulties living independently in their communities. advance directive: Information provided to a healthcare provider that details an individual’s wishes for medical care should that individual become incapacitated. Affordable Care Act (ACA): A major healthcare reform law passed by the US Congress in 2010. The ACA includes a number of provisions that affect the financing and delivery of long-term services and supports. aged society: A society in which people aged 65 or older make up more than 14 percent but no more than 20 percent of the population.

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age-friendly communities: Planned environments that allow people of all ages to participate in activities to keep individuals healthy and encourage economic stability. ageism: Negative or positive stereotypes, prejudice, or discrimination against or to the advantage of individuals on the basis of their chronological age or on the basis of a perception of their age. age-segregated communities: Housing, frequently gated, that restricts ownership of units to individuals who have reached a certain age, such as age 50 or 55, in order to provide a living area without children around. Sometimes called age-restricted communities. aging in place: The practice, preferred by many older adults, of staying in their own homes and communities as they grow older. Aging Network: A comprehensive and coordinated system of home and community-based long-term care services housed under the Administration on Aging. The network includes Area Agencies on Aging (AAAs), some of which may operate as Aging and Disability Resource Centers (ADRCs) that provide a single point of entry for information about services and supports. aging process: Changes in all realms of a human being’s development and functioning, including the biological, psychological, social, and spiritual dimensions, that occur over the entire life span from birth to death. Such changes are influenced by a mix of genetic, environmental, social, and behavioral factors, including access to healthcare services. aging society: A society in which people aged 65 or older make up more than 7 percent but no more than 14 percent of the population. Alzheimer’s disease: A progressive and fatal brain disorder that destroys brain cells and causes memory loss as well as problems with thinking and behaviors that can impair an individual’s work and social activities. American Rescue Plan of 2021: Stimulus legislation passed in 2021 to help the US economy recover from the impact of COVID-19 and provide assistance for aging and disability services. Americans with Disabilities Act (ADA): Legislation passed in 1990 extending the reach of the Rehabilitation Act by prohibiting discrimination against people with disabilities in the areas of employment, transportation, public accommodations, communications, and government activities. annuity: A long-term care payment option that involves a contractual arrangement with an insurance company.

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assisted living facilities (ALFs): Communities in which staff help residents with the activities of daily living, coordinate services from outside providers, and monitor activities to help ensure residents’ health, safety, and well-being. attending physician: The physician designated to provide overall care of a long-term care resident. autism spectrum disorder (ASD): A social communication disorder that may result in limitations in effective communication, social participation, social relationships, academic achievement, and occupational performance. average daily census: A measure of the average number of patient days over a set period of time, calculated by dividing the total patient days for a set period by the number of days in that same period. balance sheet: A financial statement that provides a snapshot of the organization at a point in time. baseline: The starting point to assess the cognitive and functional abilities of an individual before an illness or medical event. benefits: Indirect financial payments—which may include health insurance, vacation, and retirement options—given to employees. behavioral health: The field of healthcare dealing with mental health and behavior. capital budget: A budgeting tool that outlines plans for long-term expenditures, including land, facilities, and equipment. Care Area Assessment (CAA): A systematic review of information obtained about a resident through Medicare’s Minimum Data Set assessment tool. care coordination: The deliberate organization of patient care activities between two or more participants (including the patient) involved in a patient’s care to facilitate the appropriate delivery of healthcare services. care transition: Transfer or movement from one care setting to another, such as from an inpatient hospital stay to a skilled nursing facility to home health care. Complex care transitions refer to care episodes requiring multiple transfers between various providers and levels of care. Cash and Counseling: A program that allows individuals eligible for Medicaid to manage their healthcare budget, decide which products and services to receive, and choose how they will receive them. Copying and distribution of this PDF is prohibited without written permission. For permission, please contact Copyright Clearance Center at www.copyright.com.

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categorically needy: The basis for determining eligibility for a service or reimbursement that is related to medical diagnoses and not necessarily restricted because of high income. Center for Independent Living (CIL): Model for a grassroots network of community service providers operated by and for people living with disabilities. certification: A process of external review or assessment to ensure qualification to perform a job or task. Long-term care facilities in the United States are certified to provide care by the federal Medicare and Medicaid programs. charge nurse: A licensed or registered nurse who manages skilled nursing care for particular unit(s). Duties include supervising paraprofessional staff and assisting professional staff in implementing a resident’s plan of care. chronic health condition: A health condition lasting for a year or longer that requires ongoing medical care, limits an individual’s activities of daily living, or both. chronic obstructive pulmonary disease (COPD): A category of lung diseases that block airflow and make breathing difficult. civil law: The area of law dealing with cases brought by individuals, corporations, or governmental authorities to enforce a right or to collect damages when injuries have occurred. civil money penalty: A punitive fine imposed by a civil court on an entity that has profited from illegal or unethical activity. clinical liaison: An individual who markets rehabilitation services to hospitals and healthcare systems, patients, families, and caregivers and ensures continuity of care. clinical nurse specialist (CNS): A licensed or registered nurse with advanced training and experience in a specialty area. coaching: A supervisor-led series of interactions with an employee to enhance a specific set of skills and abilities identified as deficient. Code of Federal Regulations (CFR): A collection of federal rules and regulations in the United States. Title 42 sets standards for participation in the Medicare and Medicaid programs that must be met by all facilities. cohousing community: A type of collaborative community designed and operated by the residents. The community may be multigenerational or exclusively for people aged 55 or older.

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Commission on Accreditation of Rehabilitation Facilities (CARF): An international accreditation agency that offers accreditation for aging services providers as well as behavioral health, substance abuse, and other rehabilitation organizations. commitment: The state or an instance of being obligated or emotionally compelled. common law: Law based on custom and judicial precedent rather than on written statutes. Community-Based Care Transitions Program: A Centers for Medicare & Medicaid Services program that helps community-based organizations form partnerships with healthcare systems, long-term care organizations, rehabilitation facilities, and other post-acute care providers. It aims to identify the needs of Medicare beneficiaries recently discharged from hospitals to their homes, coordinate the care of those individuals, and reduce hospitalacquired conditions and hospital readmissions. comorbidities: The presence of two or more chronic health conditions in one person at the same time. compensation: The salary or hourly pay received by an employee. Conditions of Participation: Requirements that healthcare organizations and providers must meet to participate in the Medicare and Medicaid programs. congestive heart failure (CHF): A progressive condition that affects the ability of the heart to pump blood. congregate care facility: A facility typically designed for people aged 75–82 that offers social activities and homemaker services such as meals, housekeeping services, and transportation. The facility also provides assistance with instrumental activities of daily living. continuous home care (CHC): Hospice care that provides 8 to 24 hours of care per day by a nurse or home health aide, often needed because of difficulty managing symptoms or a break in the primary caregiver support system. CHC is reevaluated every 24 hours. continuum of long-term care: A holistic system comprising services and mechanisms that assist individuals over time with a wide range of physical health, mental health, and social services needs across all levels of care intensity. COVID-19 pandemic: A worldwide epidemic in the twenty-first century resulting from the spread of a particular SARS CoV-2 (coronavirus) strain and its subsequent mutations that impacted healthcare and senior living providers as well as global economies. criminal law: The area of law dealing with crimes and punishment for crimes.

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cultural competence: A set of congruent behaviors, attitudes, and policies that come together in a system or agency or among professionals that enables effective interactions in a cross-cultural framework. cultural humility: A dynamic and lifelong process focusing on self-reflection and personal critique, acknowledging one’s own biases and understanding the complexities of identities. culture change movement: A movement that advocates to transform the traditional medical model of long-term care by providing services in a manner that nurtures the human spirit while also meeting medical needs. This approach to service delivery is often called person-centered care or resident-directed care. dashboard: A financial reporting tool used for comparative analysis of key performance data of a business operation. Death with Dignity statute: A law that provides physicians with protection from liability if they prescribe medications for medical aid-in-dying, provided that (1) the patient has an incurable and irreversible disease that will cause death within six months, (2) the patient has given written informed consent, and (3) the attending physician’s conclusions are confirmed by a second physician. defendant: A person or party being sued or accused of a crime in a court of law. dementia: An acquired impairment of intellectual function that compromises three or more of the following areas of mental activity: language, memory, visual/spatial skills, emotion or personality, and cognition. demyelinating condition: A condition wherein the myelin sheath of nerve fibers in the brain and spinal cord is damaged. Multiple sclerosis (MS) and amyotrophic lateral sclerosis (ALS) are the most common forms of this condition. diabetes: A condition in which the body’s inability to produce insulin leads to elevated levels of glucose in the blood. dimensions of care model: A fluid, nonlinear approach to long-term care that acknowledges the services identified in the continuum of care model, allows consumers to have a single point of entry into the LTC delivery system, and emphasizes the option for LTC consumers to use technology and supportive services to remain independent within their community. dining services: The department in residential or long-term care communities responsible for food services. Also sometimes known as the Dietary Department. disability studies: An interdisciplinary field of study that examines the meaning, nature, and consequences of disability as a social construct. Copying and distribution of this PDF is prohibited without written permission. For permission, please contact Copyright Clearance Center at www.copyright.com.

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discharge planning: The process of planning the movement of an individual from one care setting to another care setting or back to the community. It typically involves the creation of a transitional care plan, as well as participation from a multidisciplinary team of providers. diversity: The variation in cultural, personal, and lifestyle attributes of individuals. A diverse group includes people who differ in race and ethnicity, age, sexual orientation, socioeconomic status, and other attributes. do-not-resuscitate (DNR) order: Instructions, usually written by a physician after discussion with a patient, telling other healthcare providers that, if the patient’s heart were to stop beating, they should not try to restart the patient’s heart through cardiopulmonary resuscitation or other treatments. dually eligible population: People who are simultaneously eligible for both Medicare and Medicaid. dysphagia: A medical term for difficulty in swallowing foods or liquids. Eden Alternative: A philosophy of providing long-term care services in an environment that promotes quality of life for all involved, eliminating the “plagues” of boredom, loneliness, and helplessness. elder abuse: Mistreatment of an older adult; common types include physical abuse, emotional abuse, sexual abuse, exploitation, neglect, and abandonment. Elder Justice Act of 2010: A United States federal law, part of the Affordable Care Act, to protect elders from abuse, neglect, and exploitation. electronic health record (EHR): A digital healthcare file with various data elements that provide a historical view of an individual’s healthcare and personal information at a specific organization. employment at will: A doctrine of employment in which the employer is free to discharge individuals without cause and the employee is free to quit, strike, or cease working at any time. end-of-life care: Care provided to patients approaching the end of life. It is focused on pain relief, comfort, respect for the patient’s decisions, support for the family, and interventions to address psychological and spiritual needs. engagement: The condition that fosters involvement, commitment, passion, enthusiasm, focused effort, energy, and the employee’s willingness to perform tasks above and beyond what is required to help the employer succeed.

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enhanced assisted living: Higher levels of clinical care and nursing services offered via state waiver in some assisted living communities, especially during the COVID-19 pandemic. ethics: Moral principles that govern the behavior of a person or group. ethics committee: An interdisciplinary group devoted to resolving ethical dilemmas in healthcare and protecting the rights of individuals receiving care. evaluation: The assessment of an employee’s job performance. failure mode and effects analysis (FMEA): A careful, stepwise analysis and consideration of all possible steps where failure could occur within a process (the failure modes), the likelihood of failure among the steps, and the potential impact that failure might have on desired outcomes. family council: A self-organized advocacy group of family members, partners, or friends of residents within residential and skilled care communities designed to represent the interests of residents, promote high-quality services, and communicate matters of concern and issues to management for resolution. federalism: The concept in United States law recognizing that each state has the right to pass its own laws as long as they are not prohibited by or contrary to the US Constitution. federal law: The body of law consisting of the US Constitution, federal statutes and regulations, US treaties, and federal common law. felony: A crime that is punishable by a term of imprisonment of more than one year. filial piety: A cultural norm rooted in the Confucian philosophy that defines a virtue to respect older family members and ancestors. In modern Asian countries such as China, South Korea, and Japan, filial piety supports a cultural assumption that the oldest son and his family have the primary responsibility to care for aging parents. fixed costs: Operating costs that do not change based on census; costs that are controllable. frailty: A condition marked by a lack of resilience to physiological changes and an elevated risk of poor health outcomes. Frailty may be related to multiple physiological conditions. general inpatient care (GIP): Hospice care provided in an inpatient setting because a patient’s care needs cannot be met at home. The setting may be a freestanding hospice facility, an inpatient hospice unit within a hospital, or an inpatient hospice unit in a skilled nursing facility.

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generally accepted accounting principles (GAAP): Standards set forth by the accounting profession to guide organizations’ financial reporting. geriatrics: A specialized branch of medicine addressing the health and care of older adults. gerontology: The scientific study of aging from a biopsychosocial and spiritual perspective, including how individuals, communities, and societies age. goals: A set of desired outcomes including actionable items an organization strives to achieve that contribute to its strategic planning and align with its mission and vision. governing body: A group of individuals who collectively provide oversight of an organization, with ultimate legal and fiduciary responsibility for how the organization functions. Also known as board of directors or owner. Green House Project: A deinstitutionalization model for long-term care in which individuals live in small homes and have access to clinical and personal care services at the same level of those provided in high-quality nursing homes. group home: A publicly funded facility that provides housing, meals, and services for individuals with intellectual or developmental disabilities who would otherwise need institutional care. Also called a community care facility. guardianship: The process of designating an individual to serve as a legal guardian, to make decisions for another person who can no longer make or communicate decisions for themself. healthcare proxy form: A document that permits a competent adult to designate another person as a healthcare surrogate who can make healthcare decisions for the patient if the patient is unable to make or communicate the decisions directly. healthcare surrogate: A person designated by a patient to make healthcare decisions for the patient in the event that the patient is no longer able to make decisions. If no healthcare surrogate has been designated by the patient, the next of kin is the healthcare surrogate by default. health disparities: Preventable differences in the burden of disease, injury, or violence, or in opportunities to achieve optimal health experienced by socially disadvantaged racial, ethnic, and other population groups and communities. health equity: The state in which everyone has a fair and just opportunity to attain their highest level of health, requiring ongoing societal efforts to address injustices as well as economic, social, and other obstacles to health and healthcare.

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health homes: Person-centered care coordinated across providers of all levels, including hospitals, physicians, and long-term services and supports, to meet both the physical and behavioral health care needs of adults with multiple chronic conditions. Health Insurance Portability and Accountability Act (HIPAA) of 1996: A US law that protects health insurance coverage for workers who change or lose their jobs, establishes national standards for electronic healthcare transactions, and seeks to maintain the privacy and security of individuals’ health information. Healthy People: An initiative of the US Department of Health and Human Services intended to help individuals, organizations, and communities improve their health and well-being. Hill-Burton Act: A law under which the federal government provided interest-free loans to healthcare providers interested in building nursing homes affiliated with hospitals, with the provision that they would have to provide charity care in the future for residents. holistic approach: An integrative approach of treating the whole person—mental, physical, and social—and not just medical symptoms. home health care: A wide range of medical and healthcare services provided in the home to aid with recovery from illness or injury. hospice: A treatment program that provides support and comprehensive care for the dying. Hospice care focuses on maintaining quality of life by relieving physical, emotional, or spiritual suffering. Hospital-at-Home: An innovative care model used by healthcare organizations that provides hospital-level care in a patient’s home as a full substitute for acute hospital care, promotes patient-centered care, and helps reduce hospital readmission stays. hospitality model: The attitude, behavior, and standards enabling a community to provide exceptional service and positive experiences to residents of long-term care communities. Hospital Readmissions Reduction Program (HRRP): A program under the Affordable Care Act that requires the Centers for Medicare & Medicaid Services to reduce payments to hospitals that have excess readmissions of discharged Medicare beneficiaries. housing plus services programs: Programs that offer healthcare and social services and supports through on-site service coordinators or nurse coordinators at federally subsidized housing complexes for older adults.

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huddle: A short, stand-up meeting of administration and department heads—15–30 minutes in length—that typically is set up at the start of the workday to aid in communication and care of clients or residents. human resources: Practices and policies that are necessary to keep the people side of an organization running. hyperaged society: A society in which people aged 65 or older make up more than 20 percent of the population. hypertension: High blood pressure. Improving Medicare Post-Acute Care Transformation (IMPACT) Act of 2014: Legislation requiring post-acute care (PAC) providers to report standardized patient and resident assessment data, data on quality measures, and data on resource use and other measures. The law also requires that the data be interoperable to allow for its exchange and comparison among PAC and other providers. income statement: A financial statement that reports results of operations over a specific period. Also called a statement of operations. incremental budgeting: A method of budgeting that uses the previous period as the basis for any incremental additions for the new budget period. independent living: A category of housing options, such as adult communities and congregate housing arrangements, for individuals who are able to live without assistance. These residences often impose age restrictions and may offer social activities, supportive services, and increased security. inpatient rehabilitation facility (IRF): A facility licensed as a hospital or certified unit of a hospital and oriented toward intense courses of rehabilitation and therapeutic care. inpatient respite care (IRC): Hospice care provided in an inpatient setting when the patient’s primary caregiver is having difficulty meeting the patient’s needs at home because of caregiver stress or other issues. IRC is limited to a five-day period. instrumental activities of daily living (IADLs): Activities that are not necessary for fundamental functioning but allow people to live independently. Examples include shopping, house cleaning, cooking, and managing finances. interoperability: The ability of information systems to transmit and read data regardless of the technology platform (or operating system) or the software language.

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interview: The process in which a prospective employee (the interviewee) answers questions so that the prospective employer (interviewer) can obtain information to use in making a hiring decision. Jimmo v. Sebelius: A nationwide class-action lawsuit resulting in a settlement that requires CMS to confirm that Medicare coverage is determined by a beneficiary’s need for skilled care, not on their potential for improvement. job analysis: The process of collecting information about a job by determining its tasks and duties, including the general importance of each. job description: A detailed description of the minimum qualifications and skills necessary to perform the duties of a job. The Joint Commission: A private, not-for-profit organization that operates accreditation programs for a fee to subscriber healthcare organizations in the United States. Labor–Management Relations Act (LMRA): A 1947 law that defines and prohibits unfair labor practices by unions. Also called the Taft-Hartley Act. labor union: A group of workers that organizes for the purpose of furthering the social and economic well-being of its membership. leadership: The process of understanding the environment and creating the conditions for others to be influenced to behave and act in ways that support the mission, vision, and goals of the organization. licensure: Permission granted by an agency of the government that provides a right to practice certain legally defined functions. In the United States, states license healthcare facilities to provide long-term care services. life plan communities (LPCs): Residential complexes that offer comprehensive nursing care and housing options to adults as they age and as their needs change. Assisted living, skilled nursing, and independent living facilities, along with their respective nursing and service components, are all located in one community. Also called continuing care retirement communities (CCRCs). Life Safety Code: A compilation of fire safety requirements for new and existing buildings to ensure safety and protection of life during fires and other emergencies. Livable Communities: As developed by AARP, communities that are safe and secure, offer choices in places to live, and equitably serve residents of all ages, ability levels, incomes, races, ethnicities, and other backgrounds. Copying and distribution of this PDF is prohibited without written permission. For permission, please contact Copyright Clearance Center at www.copyright.com.

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living will: A legal document that details the patient’s wishes regarding the type of medical care the patient does or does not want performed in the event that they can no longer communicate and medical treatment is artificially prolonging their life. long-term acute care hospital (LTACH): A facility that treats patients who require intensive, long-term services for complex problems for more than 25 days. Care at an LTACH often follows an acute care hospitalization. long-term care (LTC): A wide range of health services, support services, and other assistance provided informally or formally to individuals who are living with chronic illnesses or disabilities and unable to function independently on a daily basis. long-term care ombudsman: An advocate for long-term care residents in the areas of resident rights, quality of care, and resolution of complaints. long-term care workforce: The broad spectrum of workers who provide long-term care services and supports, from direct care to administration. long-term services and supports (LTSS): Services and supports provided to individuals at any age and in a wide range of settings that correspond to problems in performing activities of daily living and instrumental activities of daily living. Long-Term Services and Supports State Scorecard: A scorecard for states in the area of long-term services and supports for older adults, people with physical disabilities, and family caregivers to drive progress for improvement in services. management: The process of getting things done through and with people by directing and motivating the efforts of individuals toward common objectives. management by walking around (MBWA): Behaviors and practices characterized by managers interacting with workers in an unstructured manner to promote coordination and follow-up of services. management reports: A facility-defined set of reports that provide critical financial and operational data to management. mandatory long-term care insurance: Insurance programs for long-term care toward which people in certain age groups or employment statuses are required to contribute. Material Safety Data Sheets: Accessible to all employees, product description information sheets that describe the content and nature of all chemicals contained in a product used in the business, how to safely handle the product, and steps to take in the event of an accident or incident involving the product.

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means testing: Determining whether an individual meets a program’s eligibility criteria, which generally are based on income level. mediation: An intervention in which a neutral third party attempts to assist two parties in reaching a mutually agreed on solution. Medicaid: A means-tested federal insurance program in the United States that pays for medical care and other supportive services for low-income individuals, people living with disabilities, and poor older persons. The states administer their programs under broad federal guidelines. medical director: The physician responsible for implementing resident care policies within the long-term care organization. The medical director’s responsibilities should be clearly outlined in either their contract or a job description. medical home: A care approach whereby a primary care physician, in conjunction with specialists and other healthcare providers, coordinates the access to healthcare services when and where they are needed. medical malpractice: A negligent act or omission by a doctor or other medical professional who has a duty to care for a specific patient that results in damage or harm to that patient. Medicare: The federal health insurance program in the United States for individuals aged 65 or older, those on Social Security disability benefits for more than two years, and those living with Lou Gehrig’s disease or end-stage renal (kidney) disease. Medicare covers care provided in skilled nursing facilities for up to 100 days, as well as home care. Medicare Home Health Value-Based Purchasing Model: A Medicare demonstration program that shifts payment for Medicare-certified home health care agencies from volumebased reimbursement to payments based on quality of outcomes for Medicare beneficiaries receiving home health services from the federal Medicare program. memory care unit: An area within a residential care setting that provides specialized care for individuals with dementia. mentoring: A relationship based on trust and mutual respect between a skilled and experienced individual not in a supervisory role with the individual desiring to build specific knowledge, skills, and abilities. The mentor acts as a confidant, role model, and often counselor for the mentee. mHealth: The use of mobile technologies for healthcare purposes.

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Minimum Data Set (MDS): A standardized screening, assessment, and data collection tool for determining the level of care needed and the payment for services delivered in nursing homes and hospitals. misdemeanor: A crime that is punishable by a term of imprisonment of no more than one year. mission: An organization’s reason for existence and why it does what it does. Money Follows the Person (MFP): A grant program encouraging a beneficiary discharged from an institutional care facility to remain in the community and receive services at home. Moss amendments: Amendments to the Social Security Act that provided a legislative basis for standardization of nursing home regulations and denial of Medicare and Medicaid funding for organizations that fail to conform to them. musculoskeletal disorder (MSD): A condition affecting the muscles, tendons, ligaments, joints, peripheral nerves, and supporting blood vessels. Arthritis is the most common type of MSD. National Labor Relations Act (NLRA): A 1935 law that provides specific guidelines to govern the relationship between unions, organizations, and workers. Also called the Wagner Act. National Nursing Home Quality Improvement (NNHQI) Campaign: A coalition of long-term care providers, government agencies, consumers, health professionals, private foundations, and other advocates that aims to improve quality for nursing home residents and staff through a person-centered quality of life as a result of a stable and empowered workforce, dedicated to improving clinical and organizational outcomes and engaging in open communication and transparency. naturally occurring retirement communities (NORCs): Communities with a large proportion of older persons residing within a specific geographic area. NORCs frequently offer supportive service programs administered under the US Administration on Aging. net income: Revenues minus expenses, a measure of the profitability of an organization. net operating income: A before-tax figure, appearing on the income and cash flow statements of a business and used to evaluate the business’s profitability. nonmedical home care: Supportive services provided by home care attendants that does not involve medical skill; services may include light housekeeping, meal preparation, running errands, or offering companionship.

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489

nosocomial infection: An infection that originates in the skilled care services area of a community. No Wrong Door policy: A policy established in 2012 by the ACL, CMS, and the VHA to provide a one-stop, single access point, coordinated system of care that empowers individuals to make informed decisions, to exercise control over their long-term care needs, and to achieve their personal goals and preferences. nurse practitioner (NP): A nurse with an advanced degree who is qualified to treat certain medical conditions. NPs work in collaboration with a medical doctor but without their direct supervision. Office of the State Long-Term Care Ombudsman: An office that exists in every state to carry out federal requirements in advocating for long-term care residents. old-age dependency ratio: The ratio of the population aged 65 or older to the working-age population of individuals aged 15–64. Older Americans Act (OAA): Legislation passed by the US Congress in 1965 establishing the Administration on Aging and a network of state and local units to address the social services needs of older adults. Olmstead v. L.C.: A landmark case in which the US Supreme Court ruled in 1999 that persons with disabilities related to mental or emotional health needs should not be unnecessarily institutionalized and that protection under the Americans with Disabilities Act requires services to be delivered in the least restrictive setting. ombudsman program: A program responsible for addressing issues of resident rights and complaints from nursing home and assisted living residents and interested parties. Omnibus Budget Reconciliation Act (OBRA) of 1981: A US law that included Medicaid waiver programs for home and community-based services. Omnibus Budget Reconciliation Act (OBRA) of 1987: A US law, sometimes called the Nursing Home Reform Act, identifying services required of nursing homes participating in Medicare and Medicaid, as well as standards for delivering these services. It also established a patient bill of rights and an outcome-focused, resident-oriented survey process. onboarding: The process through which new employees gain the necessary knowledge, skills, and behaviors to become effective members of an organization. operating budget: A budgeting tool that details, in terms of dollars, how resources are acquired and used for a period of one year or less. It consists of a revenue budget and an expense budget. Copying and distribution of this PDF is prohibited without written permission. For permission, please contact Copyright Clearance Center at www.copyright.com.

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operating income: The amount of profit earned from operations after subtracting expenses. operating margin: The profit made on operations after subtracting variable costs but before paying taxes or interest expense. palliative medicine: The comprehensive, multidisciplinary care of patients who have lifelimiting illnesses (chronic conditions in which the condition may result in death). Palliative care extends the principles of hospice care but begins at an earlier point in the disease process. palliative sedation: Sedation administered in the last few days of life to reduce suffering from severe physical symptoms that do not respond to the typical doses of medications. Patient Driven Payment Model (PDPM): The skilled nursing facility prospective payment system based on the unique characteristics, needs, and goals of each resident. Patient Self-Determination Act: A US law requiring that patients be given access to information about the healthcare proxy form and living will when admitted to a hospital or facility receiving Medicare funds. payer mix: A summary of the sources of reimbursement in a medical entity. performance appraisal: A systematic employee review that occurs on a regular basis in which employees receive feedback about their job performance. Performance Improvement Project (PIP): A project that has a specific written mission to examine a quality management problem on an ongoing basis, collect data, and use measurement tools and a problem-solving analysis to prepare and present results to a QAPI committee as well as other parties in the nursing home. person-centered care: An approach to care that focuses on the resident as the locus of control and supports the resident in making their own choices and having control over their daily life. person-centered leadership: The ability to create a context in which each person has the potential to be the best they can be for the world. physician assistant (PA): A midlevel medical practitioner who works under the supervision of a licensed medical doctor. physician-assisted death: Death intentionally hastened through a physician’s prescription of lethal doses of medication to a patient who is terminally ill. Physician Orders for Life-Sustaining Treatment (POLST): A document that expresses a person’s end-of-life wishes for medical treatment.

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491

plaintiff: A person or party bringing a case against another in a court of law. plan–do–check–act (PDCA): A quality improvement model that involves developing, testing, and analyzing hypotheses using four steps: plan, do, check, and act. The cycle is sometimes used in modified form as a plan–do–study–act (PDSA) model. planned virtual retirement communities (PVRCs): Communities in which older adults live in their own homes but receive information and services to help them remain independent. pneumonia: An infection of the lungs caused by bacteria, viruses, or fungi. population aging: A demographic shift marked by the increasing size of the older population in proportion to the younger population. population health: The health status and health outcomes within a group of people that allows health systems, agencies, and organizations to work together to effect change locally. post-acute care (PAC): Care delivered after a stay in an acute care hospital. Settings for such care include long-term acute care hospitals, inpatient rehabilitation facilities, skilled nursing facilities, and home health agencies. Pre-Admission Screening and Resident Review (PASRR): A requirement for nursing homes to determine whether the nursing home is the most appropriate placement for individuals with intellectual or developmental disabilities. pressure ulcers: Localized areas of tissue damage or necrosis that develop because of pressure over a bony prominence. preventive maintenance: Routine scheduled inspections and tasks performed on equipment and other assets to ensure that they are kept in good working order. private long-term care insurance: Specialized private insurance that pays the cost of nursing home care and home and community-based care, though typically with a maximum daily benefit level of reimbursement. Program of All-Inclusive Care for the Elderly (PACE): A nonresidential program that provides healthcare, social services, and other services in a day care setting to consumers who are eligible for nursing homes but choose to remain in the community. Reimbursement is a mixture, sometimes capitated, of funds from Medicare and Medicaid. Protecting Access to Medicare Act (PAMA) of 2014: Legislation requiring that the Centers for Medicare & Medicaid Services specify an all-cause, all-condition hospital readmission measure for nursing homes and an all-condition, risk-adjusted rate for potentially preventable hospital readmissions.

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public health: The field concerned with advancing society’s interest in maintaining conditions in which people can be healthy; also, the science and art of preventing disease, prolonging life, and promoting physical health and efficiency through organized community efforts. Quadruple Aim: Expansion of the Triple Aim paradigm to include improving the work life of healthcare providers as part of the quality improvement process. Qualified Medicare Beneficiary (QMB): A Medicare savings program that assists eligible individuals with the cost of premiums and deductibles. quality: A predictable degree of uniformity and dependability, based on a standard suited to customer needs. Quality Assurance and Performance Improvement (QAPI): A CMS-mandated program that takes a systematic, comprehensive, data-driven approach to maintaining and improving safety and quality in nursing homes while involving all nursing home caregivers in practical and creative problem solving. Quality Improvement Evaluation System: An administrative database—containing information known as CASPER data—maintained by the Centers for Medicare & Medicaid Services. quality improvement organizations (QIOs): Private, not-for-profit organizations staffed by trained professionals who review medical care given to people with Medicare and help beneficiaries with complaints. rebalancing long-term care: The aim of shifting Medicaid dollars away from institutional care and toward community-based options with long-term services and supports in place. reciprocity: The mutual recognition among states that acknowledges a license granted by another state and extends privileges under that license without further testing except on state-specific rules. recruitment: The process of searching for and attracting new employees to the workforce. Rehabilitation Act: Legislation expanding vocational training and guaranteeing certain rights to people with disabilities. Passed in 1973, it was the first US federal civil rights protection for individuals with disabilities. remote patient monitoring: Use of technology to enable the monitoring of patients outside acute care settings, with the aims of increasing positive clinical outcomes and decreasing healthcare delivery costs.

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resident council: A self-organized advocacy group of residents within long-term care communities designed to represent the interest of community residents, promote high-quality services, and communicate matters of concern and issues to management for resolution. resident rights: Rights for long-term care residents protected under federal and state laws. restorative nursing: An interdisciplinary and collaborative approach between nursing and rehabilitation therapy related to the delivery of activities that promote a resident’s ability to adapt and adjust to living as independently as possible. reverse mortgage: A type of loan based on equity in a home, available to individuals aged 62 or older living in a primary residence without a mortgage. right-to-work laws: Statutes that prohibit employer–union agreements that require union membership as a condition of employment. risk management: A process that assesses individual risk events in terms of impact on overall organizational risk. Risk management helps manage risk proactively by minimizing threats and maximizing outcomes. root cause analysis (RCA): A process for discovering the fundamental reason a problem occurred and preventing future occurrences. rounding: The process of interacting with residents and staff by the administrator or interdisciplinary team to identify and quickly resolve issues of care and service, and to verify compliance with standards of care. routine home care (RHC): A basic level of hospice care, provided most frequently in the home or in a skilled nursing facility. safe serve: Specialized training for food service workers related to the proper handling, preparation, and storage of all food items. safety: A process or structure that reduces the probability of an adverse event. scope of practice: The extent and limits of practice by a licensed or credentialed healthcare professional as defined by the licensing body or state law. screening: Preemployment procedures (e.g., conducting a criminal background check, testing for drug use, reviewing registration boards for clinical personnel) to ensure that workers are qualified to do the job for which they would be hired.

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Glossary

Section 1915 of the Social Security Act: A 1983 amendment to the Social Security Act that allowed states to obtain a waiver from Medicaid to provide home and communitybased services. senior center: A place where older adults come together for services and activities that reflect their needs, interests, and experiences; support their independence and dignity; and encourage involvement in the community. seven stages of grief: Stages of grief that many people experience as they approach death: shock, denial, anger, bargaining, depression, testing, and acceptance. single access point (SAP): An approach allowing client access to referral and information about long-term services and supports availability and eligibility, regardless of the client’s entry point or starting place in the system. Also called single entry point (SEP). single access point (SAP) model: A model of long-term care in which patients can obtain all the services they need through one agency or organization. skilled nursing facility (SNF): A facility, often called a nursing home, that provides medical, nursing, or rehabilitative services on a residential basis. Skilled Nursing Facility Value-Based Purchasing Program: A program within the Protecting Access to Medicare Act that links Medicare Part A payments to skilled nursing facilities that participate in Medicare and Medicaid to their rehospitalization rate. SNFist physicians: Hospital-based physicians who specialize in the transition of patients from acute care settings to post-acute care settings. SNF stands for skilled nursing facility. social determinants of health: Conditions in the places where people live, learn, work, and play that affect a wide range of health and quality-of-life risks and outcomes. staffing: The recruitment and selection of qualified individuals to work for the organization. statement of cash flows: A financial statement that describes cash flows into and out of the organization and categorizes the cash flows as operations, investments, or financing. strategic human resources management: An alignment of strategic business goals of the organization with human resources to foster innovation and improve motivation, satisfaction, productivity, and eventually overall performance. strategic planning: The process by organizational stakeholders that assesses the internal and external environment to determine the opportunities for future growth and areas for improvement. strike: An organized work stoppage orchestrated by a union.

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stroke: The interruption of blood flow to the brain. Also called a cerebrovascular accident (CVA). SWOT analysis: A situational assessment tool used to identify internal strengths and weaknesses and external opportunities and threats for an organization. telehealth services: Use of electronic information and telecommunication technologies to provide care when a consumer and a healthcare provider are in separate locations. therapeutic diet: A diet that is ordered by a physician as part of treatment for a disease or clinical condition. therapeutic recreation: A systematic process that uses recreation and other activity-based interventions to address the assessed needs of individuals with illnesses or disabling conditions, as a means to psychological and physical health, recovery, and well-being. Title XX: A block grant program under the Social Security Act that provides communitybased care for older adults and people living with disabilities. tort: A civil wrong for which a plaintiff may collect money for damages. total pain management: Comprehensive assessment of and planning for a patient’s total pain, including physical, psychological, and spiritual pain. total quality management (TQM): A participative and systematic approach for planning and implementing a continuous improvement process for an organization. total rewards: The monetary and nonmonetary return provided to employees in exchange for their time, talent, efforts, and results. town hall meeting: A meeting typically hosted by senior management of a long-term care community to foster communication with stakeholders (employees, residents, families) by communicating information to allow the audience to have input to influence the organization’s decisions. transitional care unit (TCU): A unit in a skilled nursing facility or hospital that provides healthcare services to individuals who need additional support after a discharge from acute care services in a hospital setting. transition of care: see care transition transitions coach: An individual who specializes in assisting patients and residents in movements through the care transitions process. Also called care navigator.

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Triple Aim: Improvements in the US healthcare delivery system that simultaneously improve the patient experience of care, improve the health of populations, and reduce the per capita cost of healthcare spending. trust: A complicated legal instrument that can allow for assets to be used to pay for longterm care services when certain legal and tax requirements are met. turnover: The termination of employment, whether voluntary or involuntary, or movement from one position to another by means of promotion or transfer. Uniform Health Care Decisions Act (UHCDA): A model statute that facilitates and encourages the making of advance directives. universal long-term care coverage: Coverage of all citizens by public long-term care programs administered by national and local governments. urinary incontinence: Loss of bladder control. urinary tract infection (UTI): An infection in any part of the urinary system. values: The formally expressed ethical principles and behavior of the organization and its members. variable costs: Operating costs that fluctuate with patient census; costs that are noncontrollable. variance analysis: The process of analyzing differences between budgeted and actual costs and identifying operational areas for examination and scrutiny. vision: Where the organization strives to be in the future while in alignment with the organization’s values. wellness programs: Programs that promote physical, cognitive, and emotional health and well-being of individuals and communities. workers’ compensation: Insurance that provides employees with medical care, rehabilitation services, and financial settlements for workplace injuries. zero-based budgeting: A method of budgeting that requires all expenses to be justified for each year.

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INDEX

Note: Italicized page locators refer to exhibits, both with and without figures. AAPI racial group. See Asian American and Pacific Islander racial group AARP, 135, 219, 398 Ableism, 8–9 ACA. See Affordable Care Act of 2010 Accountability in long-term care, 397–99 Accountable care organizations (ACOs), 48, 51, 81, 456–57 Accountable Health Communities, 86, 135 Accounting and bookkeeping, 299 Accreditation, 388, 389–99; definition of, 388; Joint Commission, 388, 401, 452; post-acute care provider, 392. See also Regulation of long-term care ACE unit. See Acute Care for Elders unit ACHCA. See American College of Health Care Administrators ACL. See Administration for Community Living ACOs. See Accountable care organizations ACS. See American College of Surgeons; American Community Survey

Active adult communities for those aged 55 or older, 293 Activities and enrichment, 310–11 Activities of daily living (ADLs): assisted ­living communities and, 393; ­caregivers for older adults requiring, 41; Cash and Counseling programs for ­services related to, 145; chronic health ­conditions and, 6; community-based LTSS for veterans and, 149; definition of, 4; dementia and, 202; long-term care and, 292, 293, 294, 301, 408; long-term care workforce and, 334, 336, 338; nursing home standards and, 391; older adults in racial and ethnic minority groups and, 219; participants in senior centers and, 136; physical wellness and, 198; sensory conditions and, 204; service reimbursement and, 408 Activity-based budgeting, 416 Activity professionals in LTC settings, 337 Acute Care for Elders (ACE) unit, 72

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498

Index

Acute care providers, in hospitals and health care systems, 71–73 Acute Hospital Care at Home program, 142, 143, 322 AD. See Alzheimer’s disease ADA. See Americans with Disabilities Act of 1990 ADAAA. See ADA Amendments Act of 2008 ADA Amendments Act (ADAAA) of 2008, 133, 346, 368 ADEA. See Age Discrimination in ­Employment Act of 1967 ADI. See Alzheimer’s Disease International ADLs. See Activities of daily living Administration for Community Living (ACL), 16, 40, 133, 134, 222, 397 Administration on Aging (AoA): Administration for Community Living and, 40, 133, 134, 397; Aging and Disability Resource Centers and, 40, 131, 132, 397; Aging Network and, 129, 132, 396–97; establishment of, 7, 11, 33; funding issues, 132; Health Insurance Portability and Accountability Act and, 397; home and community-based services and, 396; national data related to older Americans compiled by, 222; naturally occurring retirement communities and, 106–7; Older Americans Act managed by, 129; reorganization of, 40; Title XXIX of the Public Health Service Act and, 397 Administrative interactions and coordination, 316–19; resident and family councils, 319; team meetings, 316–18; town hall meeting, 318 Administrative professionals, 337 Administrator: complying with regulations, 315; continuing education requirements for, 315–16; definition of, 271; financial management tools for long-term care, 414–26; managing financial resources, 319; managing quality improvement, 319–20; role and functions of, 314–20, 337. See also Administrative interactions and coordination

Administrator-of-record (AOR), 315 Admissions, 300–301 Admissions coordinator, 300 ADON. See Assistant director of nursing ADRCs. See Aging and Disability Resource Centers Adult day service, 137–39; annual rate for, 138–39; definition of, 137; history of, 137–38; key characteristics of, 139; models, 138; services provided in, 138; settings, clients, ownership, and financing, 138–39, 139; sundowning, 138 Adult family homes, for veterans, 109 Adult medical foster care homes, for veterans, 109 Adult Protective Services (APS), 379–80 Adults with disabilities, 6–9, 7; disabilities legislation and, 35–37; Healthy People 2030 objectives related to, 196, 197; housing for, 104, 105, 197, 396, 397; Jimmo settlement and, 37; obstacles to LTSS access, 37–38; services for, 132–35; Ticket to Work program and, 37. See also Chronic health conditions Advance directive, 175 Advancing Excellence in America’s Nursing Homes campaign, 399 Adverse medical event (AME), 38 Affordable Care Act (ACA) of 2010: care transitions under, improving, 45, 46; definition of, 31; goal of, 32; HCBS incentives/provisions and, 128, 429; health promotion and wellness ­emphasized in, 14; long-term care financing and delivery initiatives, 428–29; long-term care service delivery impacted by, 31, 38–52; “meaningful access” to language assistance, 232; Money Follows the Person demonstration project, 429; overview of, 31–32, 347; passage of, 1, 12, 20, 33; quality-related provisions of, 442; skilled nursing facilities and, 49, 113; structure of, 32–33 AFib. See Atrial fibrillation

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Aged Care, 253 Age Discrimination in Employment Act (ADEA) of 1967, 8, 346 Age-friendly communities, 128, 135 Ageism, 8–9 Agency for Healthcare Research and Quality (AHRQ), 438, 449, 454 Age-related macular degeneration, 204 Age-segregated communities, 106 Aging and Disability Resource Centers (ADRCs), 40, 74, 79, 131, 132, 397 Aging in place, 249 Aging Network, 74, 129, 132, 133, 136, 396–97 Aging process, 13 Aging society, 245 Aging with Pride: National Health, Aging and Sexuality/Gender study, 229 AHCA/NCAL. See American Health Care Association/National Center for Assisted Living AHRQ. See Agency for Healthcare Research and Quality AI/AN population. See American Indian or Alaska Native population Alcohol abuse, 46 ALFs. See Assisted living facilities Almshouses, 9, 114 ALS. See Amyotrophic lateral sclerosis Alternative payment models (APMs), 49 Alzheimer’s disease (AD), 4, 6, 46; adult day services and, 138, 139; among LGBTQ elders, 229; among older Hispanics/ Latinos, 226; dementia and, 202, 256–57, 311, 312; demonstration grants, 397; ethical decision making at the end of life (case study), 381–82; Healthy People program and, 194; hospice and palliative care for, 162, 163, 173; memory care and, 113, 311; overview of, 202; palliative care choices (case study), 180–81; skilled nursing facilities and, 113, 114; sundowning, 138 Alzheimer’s Disease International (ADI), 256, 257 AME. See Adverse medical event

499

American Cancer Society, 201 American College of Health Care ­Administrators (ACHCA), 353 American College of Surgeons (ACS), 387–88 American Community Survey (ACS), 338 American Health Care Association/National Center for Assisted Living (AHCA/ NCAL), 453 American Housing Act of 1949, 105, 130 American Indian or Alaska Native (AI/AN) population, 227–28 American Medical Association, 387 American Rescue Plan of 2021, 13 Americans with Disabilities Act (ADA) of 1990, 11, 34, 35, 129, 133, 315, 346, 368, 389, 394 Amyotrophic lateral sclerosis (ALS), 202 Annuity, 408 AoA. See Administration on Aging AOR. See Administrator-of-record APMs. See Alternative payment models Appendix K Medicaid 1915(c) Home and Community-Based Services Waiver, 424 APS. See Adult Protective Services Arthritis, 15, 46, 141, 162, 196, 197, 201, 203, 219, 226, 229 ASD. See Autism spectrum disorder Asian American and Pacific Islander (AAPI) racial group, 223–24 Asians, 223, 224 Assessments, 304–5 Asset mapping, 22–24, 23 Assistant director of nursing (ADON), 302 Assisted living facilities (ALFs), 109–13, 293; assessments in, 304–5; definition of, 109; history of, 110–11; medical services in, 303–5; organization chart, 297; philosophy of, 111–12; r­ egulation of, 393–94; resident care in, 303; ­services offered in, 110; settings, clients, ­ownership, and financing, 112, 112–13; themes in, 111–12 Assisted Living Workgroup, 111 Asthma, 42, 46, 201, 203, 227, 229 Atrial fibrillation (AFib), 46, 202

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Index

Attending physician, 303–4 Audits, 425–26 Australia, combination of national insurance and means-tested programs in, 250, 253 Autism spectrum disorder (ASD), 46, 108, 201, 205 Average daily census, 423 Background checks, 351 Balance sheet, 422 Baldrige Excellence Framework, 19, 448 Baldrige Health Care Criteria, 448 Barbera, E. F., 292 Baseline, 307 Basic Certificate in Quality and Safety, 453 BCPI Advanced. See Bundled Payments for Care Improvement Advanced Bedsores, 204 Behavioral health, 205 Behavioral services workers, 337 Benefits, 350 Berwick, Don, 456 Biden, Joe, 20 Black population, 5, 138, 219 Bladder and incontinence conditions, 201 BLS. See US Bureau of Labor Statistics Blueprint for a Better Aging Infrastructure (LeadingAge), 1 BOM. See Business office manager Bookkeeping, 299 BPCI. See Bundled Payments for Care Improvement Budgeting, 415–22, 417–21; activity-based budgeting, 416; capital budget, 415; incremental budgeting, 415–16; ­operating budget, 415; operating income, 416; operating margin, 416; per patient day revenue estimate, 416; ­sample budget census and revenue, 417–19; sample labor budget, 420; spend-down form, 416, 421; top-down approach to, 416; zero-based budgeting, 416 Built environment, 135 Bundled Payments for Care Improvement (BPCI), 81, 84

Bundled Payments for Care Improvement Advanced (BCPI Advanced), 81 Bureau of Labor Statistics, 222 Bush, George W., 33, 145 Business office manager (BOM), 299, 422 Business operations in long-term care ­communities, 295–314; ­accounting and bookkeeping, 299; activities and ­enrichment, 310–11; admissions, 300–301; assisted living residence ­organization chart, 297; care and ­support services, 301–3; central supply, 306; concierge services, 295; dining ­services, 308–10; health information systems and medical records, 299; human resources and payroll, 299; laboratory, 306; life plan community organization chart, 298; marketing and sales, 299–300; medical services in SNFs and ALFs, 303–5; memory care, 311–12; pharmacy, 305–6; p ­ hysical environment, 312–14; reception or front desk, 295, 299; rehabilitation and skilled nursing center organization chart, 296; rehabilitation services, 307–8; social services in SNFs, 306–7 CAA. See Care Area Assessment CAHPS. See Home Health Care Consumer Assessment of Healthcare Providers and Systems Survey Cancer, 6, 15, 46, 72, 79, 163, 165, 177, 196, 201, 209, 219, 226, 227, 229 Capital budget, 415 Care aides, long-term, 341–43 Care and support services, 301–3; resident care in ALFs, 303; resident care in SNFs, 301–3 Care Area Assessment (CAA), 412 Care Compare website, 49, 50–51, 82, 115, 172, 394, 397, 414, 450–51 Care coordination, 70–71, 208 Caregivers, 41, 141, 341–43 Care management in LTC settings, 337 Care plan team, 279 CARES Act, 130, 424

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Care transitions: care coordination and, 70–71; chronic health conditions and, 71; collaboration between acute and post-acute care settings and, 76; coordinating care for special populations (case study), 88–91, 91; COVID-19’s impact on, 86; definition of, 45; end-of-life care and, 85; healthcare providers and, 71–75; ­historical perspectives on, 75–76; ­Hospital-at-Home care model and, 78; hospital–skilled nursing facility partnership and, 78; laws and regulations ­affecting, 79–84; post-acute care services and, future of, 84–86; problems in, guidelines to address, 79, 80; research on, 77; transitional care unit, 117; Vermont’s SASH program and, 74 CARF. See Commission on Accreditation of Rehabilitation Facilities Caring and Aging with Pride study, 229 Case studies: ACOs and nursing home services—the new frontier, 55–56; community asset mapping, 21–25; coordinating care for special populations, 88–91; coumadin controversy, 458–59; culturally sensitive palliative care, 234–35; ethical decision making at the end of life, 381–82; how management style affects operations, 323–26; Joint Commission and ­accreditation, 401; leadership and ­person-centered care, 285–87; ­managing a budget during tight fiscal times, 430–31; palliative care choices, 180–81; prospects for St. Peter’s ­Nursing and Rehabilitation Center, 122–23; retaining certified ­nursing assistants, 357–58; serving senior ­veterans, 148–52; shortage of long-term care workers, 260; structure and ­governance for sustainability, 207–12 (See also HIV/AIDS) Cash and Counseling, 145 CASPER QM Reports. See Certification and Survey Provider Enhanced Reporting QM Reports

501

Categorically needy, 410 Catheter-associated UTIs (CAUTIs), 201 Cause-and-effect diagram, 443–44, 459 CAUTIs. See Catheter-associated UTIs CBO. See Congressional Budget Office CBOCs. See Community-Based Outpatient Clinics CCRCs. See Continuing care retirement ­communities CDC. See Centers for Disease Control and Prevention CDM. See Certified dietary manager Cellulitis, 143, 204 Center for Independent Living (CIL), 143, 389 Centers for Disease Control and Prevention (CDC), 210, 226, 338–39, 339 Centers for Medicare & Medicaid Services (CMS): accountability and quality in long-term care, 397; Accountable Health Communities, 86, 135; Acute Hospital Care at Home program, 142, 143, 322; administrator requirements, 271; advance care planning conversations, payment to providers for, 169; Aging and Disability Resource Centers, 40, 131, 132; bundled payment initiatives, 46, 47, 81, 84, 117; Care Compare website, 49, 50–51, 82, 115, 172, 394, 397, 414, 450–51; catheterassociated UTIs, 201; certified dietary manager requirements, 309; Changes in the ­Federal Long-Term Care Survey, Phase 3, 375; codes relied on, 315; Community-Based Care Transitions Program, 76, 79; cultural competence guidelines, 231–32; direct care worker requirements, 334, 335; disaster response flexibilities, 129; discharge planning, 75, 77, 82; Discharge Planning Checklist, 82; Discharge Planning Rule, 83–84; dually eligible population, 43–44, 412; eligible alternative payment models, 49; emergency preparedness guidelines, 19, 50, 312, 313; enrollment increases, 390; federal

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502

Index

spending limits, 426–27; Final Rules, 51, 129, 134, 140, 172, 450; Five-Star Quality Rating System, 38, 115, 451; Framework for Health Equity 2022–2023, 1, 13, 196; growth in enrollment, 390; HCBS regulations under, 128, 129, 134; healthcare reform, 31, 32–33, 38, 45, 46, 49; health disparities among older adults, 226; hospice benefits and regulations, 51, 163, 166–67, 169, 170–73, 179; Hospice Compare website, 171–72, 450; Hospice Quality Reporting Program, 51, 171–72, 450, 452; hospital readmission penalties, 70, 71, 84; Hospital Readmissions Reduction Program, 77, 81–82; hospital readmission statistics, 32, 45, 47, 77; Innovation Center, 428; Jimmo v. Sebelius, 37, 134; long-term care financing and delivery initiatives, 428–29; mandatory reporting, 450–52; on marital status of older adults, 224; Medical Expenditure Panel data (2017), 75; “Medicare and Medicaid Programs; Reform of Requirements for Long-Term Care Facilities” (CMS), 450; Medicare Fee-for-Service Recovery Audits, 426; Medicare-Medicaid Coordination Office, 43–44; Minimum Data Set assessment process, 412, 414; Money Follows the Person funding, 42, 145; National Partnership to Improve Dementia Care in Nursing Homes, 202; No Wrong Door policy, 16; nursing home initiatives, 114–16; Nursing Home Quality Initiative, 104, 115; nursing home standards, 390; Nursing Home Value-Based Purchasing Demonstration, 115; OBRA 1987 and, 36, 449; Patient Driven Payment Model, 301, 302, 412–14, 413; pay-for-performance models, 46; per diem payment rates, 173, 413, 424, 425; person-centered care, 275–76, 310; population increase of older adults, 219; post-acute care delivery, 75; quality activities and reporting in long-term care, 450;

Quality Assurance and Performance Improvement initiative, 451–52, 452; Quality Indicator Survey, 393; quality management and reimbursement initiatives, 414; Recovery Audit Contractors, 426; rehospitalization reduction program, 46, 47; remote patient monitoring reimbursements, 144; resident rights, 36, 374, 449; screening and background checks, 351; Skilled Nursing Facility Value-Based Purchasing Program, 82; State Operations Manual, 390, 451; state survey process, oversight for, 393; telehealth service reimbursements, 144; temporary nurse aide programs approved by, 280; translation services for elders, 232; value-based reimbursement programs, 414. See also Conditions of Participation Central supply, 306 CE requirements. See Continuing education requirements Certification, 389–99. See also Regulation of long-term care Certification and Survey Provider Enhanced Reporting (CASPER) QM Reports, 172 Certified dietary manager (CDM), 309 Certified nursing assistant (CNA), 302; job description, 349, 349; retaining certified nursing assistants (case study), 357–58 CFR. See Code of Federal Regulations Change in health status, 442 Change management, 448 Changes in the Federal Long-Term Care Survey, Phase 3, 375 Charge nurse, 302 CHC. See Continuous home care Check sheet, 444, 460 CHF. See Congestive heart failure China: formal long-term care system in, 250, 254–55; Law of Protection of Rights and Interests of Elderly People, 255; skilled nursing homes and senior living facilities in, 250, 251 CHNA. See Community health needs ­assessment

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Chronic care model, 199–200, 200 Chronic health conditions: activities of daily living and, 22; adult day services and, 139; in American Indian or Alaska Native population, 227–28; behavioral health, 205; bladder and incontinence conditions, 201; cancer, 201; cardiovascular and circulatory conditions, 201–2; chronic care model and, 199–200, 200; COVID-19 and, 140, 144, 196, 206, 228; definition of, 13; dementia and related disorders (Alzheimer’s disease), 202; disabilities and limiting health conditions, 6, 205; frailty and, 6, 200; Healthy People program and, 194; home care clients and, 141; Jimmo v. Sebelius and, 134; management of health services for individuals with, 199–205; metabolic conditions, 203; mHealth and, 144; modifiable health behaviors and, 6; musculoskeletal conditions, 203; neurological demyelinating conditions, 202; oral health, 203; overview of, 201; PACE programs and, 140; population health and, 189; respiratory conditions, 203; sensory conditions or communication conditions, 204; skilled nursing facilities and, 113; skin conditions, 204; structure and governance for sustainability (case study), 207–12 (See also see also HIV/AIDS); substance use problems, 205; transitions of care and, 71; viral conditions, 204; wellness programs and, 15, 196 Chronic kidney disease, 46, 163, 196 Chronic obstructive pulmonary disease (COPD), 46, 81, 143, 144, 201, 203, 206, 227 CHSP. See Commonwealth Home Support Programme CIL. See Center for Independent Living Civil law, 367–68 Civil money penalty, 391 Civil Rights Act of 1964, 346, 347 Civil Rights Act of 1991, 394 CLAS. See Culturally and linguistically appropriate services

503

Clients: adult day service, 138–39, 139; assisted living facilities, 112, 112–13; home care, 141–42, 142; independent living, 108, 109; life plan communities, 119, 119–20; senior center, 136–37, 137; skilled nursing facilities, 116, 116 Clinical Laboratory Improvement Amendment waiver, 306 Clinical liaison, 300 Clinical nurse specialist (CNS), 304 Clinicians, 335–36 CMS. See Centers for Medicare & Medicaid Services CNA. See Certified nursing assistant CNS. See Clinical nurse specialist Coaching, 278, 353 COBRA. See Consolidated Omnibus Budget Reconciliation Act of 1986 Code of ethics, 373 Code of Federal Regulations (CFR), 375, 391 Cohousing community, 107 Columbia Pacific, 251 Commission on Accreditation of Rehabilitation Facilities (CARF), 116, 388, 391, 392, 395, 452–53 Commitment, 277 Common law, 367 Commonwealth Fund, 398 Commonwealth Home Support Programme (CHSP), 253 Communication: barriers to, 281–82; conflict management and, 282–83; management and, 281–83; style, 282; tools for managing organizational, 283 Communication conditions, 204 Communities management, 313 Community-Based Care Transitions Program, 76, 79 Community-Based Outpatient Clinics (CBOCs), 148 Community First Choice Option program, 146 Community health needs assessment (CHNA), 209 Community Rehab Foundation (CRF), 89–91

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504

Index

Community services, 129–32; adult day services, 137–39; Aging Network, 132; Center for Independent Living, 143; home care, 140–43; information systems for electronic data collection, 143–44; Older Americans Act, 129, 131–32; PACE program, 139–40; senior centers, 136–37; Title XX, 132; types of, 136–44 Comorbidities, 293 Compensation, 350 Complex transition patterns, 32 Concierge services, 295 Conditions of Participation (CoPs): changes in, 31, 51–52; for home care agencies, 140, 142, 143, 389; for hospice, 169–71; publication of, 50; Quality Assurance and Performance Improvement in, 451; quality assurance and performance improvement plan, 19; requirements for electronic data collection, 143; revisions to, 50; for skilled nursing facilities, 52, 116, 143, 389–90, 451 Conditions of Participation for Hospice ­Providers (CMS), 51 Conditions of Participation for Nursing Homes, 104, 116, 451 Conflict management, 282–83 Congestive heart failure (CHF), 85, 143, 163, 201–2, 206, 442 Congregate care facility, 107 Congressional Budget Office (CBO), 315 Congressional Research Service (CRS), 409, 427 Connecticut Hospice, 162 Consolidated Omnibus Budget Reconciliation Act (COBRA) of 1986, 346 Consumer Assessment of Healthcare Providers and Systems (CAHPS) Hospice Survey, 171, 450, 452 Consumer directed care. See Cash and Counseling Consumer-directed programs, 144–46 Continuing Care Accreditation Commission, 395 Continuing care retirement communities (CCRCs), 293, 394, 395, 396. See also Life plan communities

Continuing education (CE) requirements, 315–16 Continuous home care (CHC), 172–73 Continuous quality improvement (CQI), 438, 441, 453 Continuum of long-term care, 15 Control chart, 444, 461–62 Conversation Project, 169, 174, 369 COPD. See Chronic obstructive pulmonary disease CoPs. See Conditions of Participation Coronavirus. See COVID-19 pandemic Cost reporting, 425 COVID-19 pandemic: American Indians’ and Alaska Natives’ high risk of death from, 228; American Rescue Plan of 2021 and, 12; assisted living facilities and, 112, 303; care transitions and, 86; chronic health conditions and, 140, 144, 196, 206, 228; CMS emergency preparedness requirements during, 312; communities of color impacted by, 53, 228, 233; crisis standards of care and, 376; cultural competence and, 232; definition of, 12; delivery of LTSS impacted by, 53; disaster response flexibilities introduced during, 129; enhanced assisted living services and, 303; financial impact of, 423–24; framework for Health Equity 2022–2032 and, 196; in history of long-term care delivery system, 12–13; home and community-based services and, 39, 134, 146; hospice and, 172, 178; housekeeping routines during, 314; life expectancy impacted by, 5–6; long-term care workforce impacted by, 335, 340, 343–44, 357; “new normal” for healthcare providers and, 456–57; PACE programs during, 140; physical environment during, 312, 313; properties of care for durable change, 456–57; quality and safety in long-term care services and, 19; quality and safety management tools for use during, 438, 453–54; senior centers and, 137; social isolation and,

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15; social media marketing via community websites during, 300; statistics on impact of, 321–22; supply management during, 306; Support and Services at Home program and, 74; teamwork during, 280; telehealth services and, 144; value-based reimbursement programs and, 414 CQI. See Continuous quality improvement CRF. See Community Rehab Foundation Criminal law, 369 Crisis standards of care (CSC), 376 Crosby, Philip B., 439, 440, 441 Crossing the Quality Chasm (IOM), 442 CRS. See Congressional Research Service CSC. See Crisis standards of care Cultural competence, 231–33, 277; in longterm care settings, 354–55 Cultural humility, 277 Culturally and linguistically appropriate services (CLAS), 232 Culturally sensitive palliative care (case study), 234–35 Culture, definition of, 232 Culture change movement, 117–18 Cummings, Robert, 202 Current Issue sidebars: caregivers as providers of LTSS, 141; crisis standards of care and COVID-19, 376; financial impact of COVID-19, 423–24; long-term care consumers: disrupting ageism and ableism, 8–9; long-term care settings: rural versus urban communities, 18; medication challenges in SNFs, 305; specialized long-term care services for veterans, 109; teamwork during the COVID-19, 280; value-based reimbursement in long-term care, 414 Dames de Claire, 162 Dashboard, 423, 424 Death is Imminent measures, 172 Death with Dignity statute, 370 DEC. See Diverse Elders Coalition Defendant, 367 Deficit Reduction Act of 2005, 427

505

Deficit Reduction Act (DRA) of 2005, 36, 128, 144–46, 427 Define, measure, analyze, improve, and ­control. See DMAIC Delivery models for long-term care services, 294–95; organization charts and long-term care community structure, 294–95; social vs. medical model, 294 Dementia, 4, 46; ACOs and nursing home services—the new frontier (case study), 51; Acute Care for Elders unit, 72; adult day services and, 138, 139; advance directives for elders with, 85; among older Black adults, 219; definition of, 202; Dementia Village and, 257; design strategies for individuals with, 312; Eden Alternative and, 118; elder abuse and, 377, 378; global epidemic of, 256, 256–57; Healthy People program and, 194, 196; hospice and palliative care for, 163; memory care and, 113, 311; palliative care choices (case study), 180–81; prospects for St. Peter’s Nursing and Rehabilitation Center (case study), 122–22; public long-term care insurance programs and, 428; senior centers and, 136; senior veterans and, 149; skilled nursing facilities and, 113, 114, 115; substance use and, 205; therapists for individuals with, 336; training in dementia care, 51 Dementia Beyond Drugs program, 202 Dementia Village, 257 Deming, W. Edwards, 438, 439, 440, 441, 445 Demographics of diverse elders, 222–25; education, 225; gender, 224; income, 225; LGBTQ identity, 224; marital status, 224–25; race/ethnicity, 223, 223–24 Demyelinating condition, 202 Departmentalization, 294 Depression, 15, 46, 72, 114, 139, 163, 164–65, 201, 204, 205, 226, 227, 311 Design, measure, assess, improve, redesign. See DMAIR Desk audit, 425–26

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Index

Diabetes, 6, 15, 42, 46, 85, 138, 141, 143, 144, 177, 194, 196, 201, 203, 206, 219, 226–27 Did You Know? sidebars: adverse medical events, 38; changes to the minimum data set, 394; exporting long-term care services: development of skilled nursing homes and senior living facilities in China, 251; hospice origins, 162; public-private partnerships for long-term care, 427; recruitment and retention as a leader’s priority, 277; specialty adult day services, 138; supportive living community: Sweetwater Spectrum, 108; Weinberg Center, 379; White House Conference on Aging, 12 Dimensions of care model, 16, 17 Dining services, 308–10; definition of, 308; dietary services staffing and training, 309; quality in, ensuring, 310 Direct care workers, 334 Direct contact support workers, 334–35 Director of nursing (DON), 301–2 Disabilities: legislation for, 35–37; racial differences in, for diverse elders, 219; studies on, 15; WHO’s definition of, 219. See also Adults with disabilities Discharge planning, 72 Discharge Planning Rule, 83–84 Diverse elders, 218–35; American Indian or Alaska Native population, 227–28; Asian American and Pacific Islander racial group, 223, 224; Asian groups, 223; cultural competence in delivering long-term care, 231–33; definition of, 220; demographics of (See Demographics of diverse elders); differences in disability for, 219; disparities in long-term care among, 230–31; health and functionality of, 219; Hispanics/Latinos, health among, 226–27; LGBTQ population, health among, 228–30; Native Hawaiian and Other Pacific Islander (not Hispanic), 223; non-Hispanic Asian Americans, 223–24; poverty and, 5; proportion of, in US population,

219, 223; quality of routine medical care received by, 219; racial differences in disability for, 219; research on, history of, 221–22; socioeconomic factors influencing long-term health needs of, 227, 228 Diverse Elders Coalition (DEC), 221 Diversity, definition of, 220 DMAIC (define, measure, analyze, improve, and control), 447, 456 DMAIR (design, measure, assess, improve, redesign), 446–47 DNR. See Do-not-resuscitate order DON. See Director of nursing Donabedian, Avedis, 441–42 Do-not-resuscitate (DNR) order, 175 Donut hole provision, 43, 44–45, 411 DRA. See Deficit Reduction Act of 2005 Drug abuse/substance abuse, 42, 46, 201, 205, 388, 452 Dually eligible population, 43–44, 412 Dysphagia, 309 Economic Partnership Agreement, 260 Economic stability, as SDOH, 192–93, 193 Eden Alternative, 118 Education, of diverse elders, 225 Education access and quality, as SDOH, 192–93, 193 EHR. See Electronic health record 80/20 rule, 444, 461 Elder abuse, 378 Elder Justice Act of 2010, 378–79 Electronic health record (EHR), 143 Elopement, 312 Emergency preparedness, 19, 50, 312, 313, 439 Emotional wellness, 198, 198 Employee relations, 345 Employee Retirement Income Security Act (ERISA) of 1974, 346, 348 Employment at will, 347 End-of-life care, 161; commonly occurring physical symptoms in, 164–66; communication in, 167–69; Conversation Project, 169, 174, 369;

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economic ­considerations, 169–73; ­interdisciplinary approach, 166–67; spirituality and religion in, 176–77 End-of-life issues, 369–72; advance directives, 370; Death with Dignity statute, 370; healthcare proxy form, 370–71; living will, 371; medical aid-in-dying, 369–70; Patient Self-Determination Act, 372; POLST form, 371; Uniform Health Care Decisions Act, 372 Engagement, 276–77 Enhanced assisted living, 303 Environmental wellness, 198, 198 ERISA. See Employee Retirement Income Security Act of 1974 Ethics: code of, 373; committees, 375, 377; crisis standards of care and COVID-19, 376; definition of, 372–73; end-of-life decision making and, 381–82; hospice and palliative care and, 175–76; leadership challenges and, 374–75; long-term care decision making and, 372; LongTerm Care Ombudsman Program and, 377; resident rights, 374 Ethnicity: definition of, 220; distribution of Americans aged 65 or older by, 223, 223–24. See also Diverse elders European Union, residential long-term care in, 120–21 Evaluation, 345, 352 Failure mode and effects analysis (FMEA), 455–56 Fair Housing Act, 387, 389 Fair Labor Standards Act of 1935, 346, 394 Falls, 204 Falls Management Program, 454 Familism, 231 Family council, 319 Family Medical Leave Act (FMLA) of 1993, 254, 346 Federal Interagency Working Group (IWG), 221 Federalism, 367 Federal law, 367 Federal Long-Term Care Survey, 52, 104, 115, 130, 375, 393, 399, 449

507

Federal Mediation and Conciliation Service (FMCS), 355 Federal spending limits, 426–27 Federal tag (F-tag), 115, 375 Feeding assistants, 303 Fee-for-Service Recovery Audits, 426 Feigenbaum, Armand V., 439, 440, 441 Felony, 369 Filial piety, 146, 254 Final Rules (CMS), 51, 129, 134, 140, 172, 450 Financial accounting, 422–24 Financial Alignment Initiative, 43–44 Financial arrangements, 24, 24–25 Financial management tools for long-term care administrators, 414–26; to assess financial health, 422; audits, 425–26; budgeting, 415–22, 417–21; cost reporting, 425; financial accounting, 422–24; financial reporting, 425; PEPPER, 425–26; variance analysis, 422, 423 Financial reporting, 425 Financial resources, managing, 319 Financial wellness, 198, 198 Financing long-term care services: adult day service, 138–39, 139; assisted living facilities, 112, 112–13; COVID-19’s impact on, 423–24; financial management tools for long-term care administrators, 414–26; home care, 141–42, 142; independent living, 108, 109; life plan communities, 119, 119–20; managing a budget during tight fiscal time (case study), 430–31; policy issues, 426–29; reimbursement in US, 407–14; senior center, 136–37, 137; skilled nursing facilities, 116, 116 Fishbone diagram, 443–44, 459 Five-Star Quality Rating System, 38, 115, 451 Fixed costs, 423, 424 Flowchart, 445, 463–64 FMCS. See Federal Mediation and Conciliation Service FMEA. See Failure mode and effects analysis FMLA. See Family Medical Leave Act of 1993 Foodborne illness, 195, 196

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Frailty, 6, 199, 200 Framework for Health Equity 2022–2023 (CMS), 1, 13, 196 Front desk, 295, 299 F-tag. See Federal tag GAAP. See Generally accepted accounting principles Garnier, Jeanne, 162 GEC. See Geriatrics and Extended Care GECDAC. See Geriatrics and Extended Care Data and Analysis Center Gender: definition of, 220; life expectancy and, 224; ratio of men to women, 224. See also Diverse elders General inpatient care (GIP), 172–73 Generally accepted accounting principles (GAAP), 422, 425 Genesis HealthCare, 251 Genetic Information Nondiscrimination Act of 2008, 347 Geriatric care management in LTC settings, 337 Geriatrician, 13 Geriatrics, 13 Geriatrics and Extended Care (GEC), 149 Geriatrics and Extended Care Data and Analysis Center (GECDAC), 150–51 Germany, mandatory long-term care insurance in, 250, 252–53, 407, 428 Gerontologists, 13–14 Gerontology, 13–14, 221 GIP. See General inpatient care Global trends in long-term care policy and service development, 248–49 Global trends in population aging, 245–48 Goals, 274 Governing body, 314–16, 319 Great Society legislation, 11, 33, 129 Green House Project, 118 Group home, 107–8 GRS-HS, 251 Guardianship, 379–80 “Guidance for Establishing Crisis Standards of Care for Use in Disaster Situations” (IOM), 376

Hager, George, 251 HCBS. See Home and community-based services HCBS State Plan, 145 Health, definition of, 232 Healthcare access and quality, as SDOH, 192–93, 193 Health Care Financing Administration. See Centers for Medicare & Medicaid Services Healthcare proxy form, 370–71 Healthcare surrogate, 175 Health disparities, 189 Health equity, 135, 189 Health homes, 42–43 Health information systems, 299 Health Insurance Portability and Accountability Act (HIPAA) of 1996, 34, 115, 347, 368, 397 Health status, 442 Healthy life expectancy, 5–6 Healthy People program, 194–96, 194–96, 197 Hearing loss, 204 Heart attack, 165, 229, 307 Heart disease, 6, 15, 42, 177, 196, 196, 219, 226–27, 229 Heart failure, 46, 77, 81, 85, 143, 163, 201, 206, 442 Hepatitis (chronic viral B & C), 46 Hernandez, Susan, 207, 208, 211 HHS. See US Department of Health and Human Services Hill-Burton Act of 1946, 10 HIPAA. See Health Insurance Portability and Accountability Act of 1996 HIS. See Hospice Item Set Hispanics/Latinos, 5, 222, 226–27 Histogram, 444, 460 HIV/AIDS, 46, 204, 207–12; care coordination and, 208; community overview, 209; funding/internal operations and, 210–11; injection drug use and, 207, 208, 209; local public health department and, 209; managerial epidemiology and, 207–8; plan of action, 211–12;

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Positive Response Initiative and, 209–11; reemergence, 207, 208; social/ medical needs and, 210; Whitefield Health System and, 209 Holistic approach, 307 Home and community-based services (HCBS): ACA provisions and, 128, 429; administrative staff in, 334; consumers of, 128; COVID-19’s impact on, 424; Deficit Reduction Act of 2005, 36, 128, 144–46; eligibility, 394, 429; enrollment and spending data, 411; evolution of services for people living with disabilities, 132–35; financial support for, versus institutional care, 44; funding for, 396–97, 410–11; historical foundations of, 128; information systems for electronic data collection, 143–44; innovations in, consumerdirected programs and, 144–46; international perspectives on, 146, 248, 249, 249, 250, 251, 254, 255; Livable Communities and age-friendly communities, characteristics of, 135; Medicaid regulations for, 128, 134; Money Follows the Person demonstration project and, 145, 429; OBRA of 1981 and, 35; Older Americans Act and, 128, 129; Olmstead decision of 1999 and, 36, 128, 133; programs and regulatory initiatives for the provision of, 129–32; providers in, 73–75; quality and safety in, 438; regulations, 396–97; for senior veterans, 148–52 (See also Veterans Health Administration); shift from institutional care to, 39–40; social policy and the development of, 128–36; timeline of, 130; Title XX program and, 128, 129; types of community-based services, 136–44; in US compared to other countries, 128 Home care, 140–42; Acute Hospital Care at Home program, 142, 143; caregivers, 141; professional providers of, 142; reimbursement for expenses, 142; settings, clients, ownership, and financing,

509

141–42, 142; share of long-term care recipients receiving care at, around the world, 249; types of services, 140–41; workforce, 341–43 HomeFit Guide (AARP), 135 Home health care, 140 Home Health Care Consumer Assessment of Healthcare Providers and Systems Survey (CAHPS), see, 450 Hospice: commonly occurring physical symptoms and, 164–66; communication in, 167–69; core issues in, 163–77; cost analysis, 172–73; Death is Imminent measures, 172; definition of, 161; economic considerations, 169–73; ethical issues in, 175–76; history of hospice movement, 162–63; Hospice Quality Reporting Program, 51, 171–72, 450, 452; interdisciplinary approach, 166– 67; key medical conditions, 163–66; locations, 174–75; Medicare Conditions of Participation, 169–71; origins, 162; pain management and, 163–64; philosophy, 161–62; seven stages of grief approach, 163; social issues, 177; spirituality and religion in, 176–77; theoretical and conceptual foundations, 161–63; therapy, 165 Hospice Compare website, 171–72, 450 Hospice Item Set (HIS), 171 Hospice Quality Reporting Program (HQRP), 51, 171–72, 450, 452 Hospital-at-Home, 78 Hospitality model, 110 Hospital Readmissions Reduction Program (HRRP), 77, 81–82 Hospital Standardization Program, 387–88 Housekeeping, 314 Housing Act of 1959, 10 Housing for adults with disabilities, 104, 105, 197, 395, 396 Housing plus services programs, 105 HQRP. See Hospice Quality Reporting Program HRRP. See Hospital Readmissions Reduction Program

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Huddles, 280, 317–18, 318 Human Good, 120 Human resources: coaching, 353; cultural competence and, 354–55; definition of, 333; employee relations, 345; evaluation, 345; functions of, 344–45; legal and regulatory environment of, 345–48, 346–47; mentoring, 353; overview of, 344; payroll and, 299; performance appraisal, 352; planning, 345; probationary period, 352–53; retention, 353–54, 357–58; staffing, 345, 348–51; strategic role of, 348; training and development, 345, 352; turnover, 343, 353; unions and, working with, 355 Hyperaged society, 245 Hyperlipidemia, 46, 226 Hypertension, 15, 46, 201–2, 226, 227, 229 IADLs. See Instrumental activities of daily living ICF. See International Classification of Functioning, Disability, and Health IDU. See Injection drug use IHI. See Institute for Healthcare Improvement IHS. See Indian Health Service Immediate health need, 300 IMPACT Act. See Improving Medicare PostAcute Care Transformation Act of 2014 Improving Measurement of Sexual Orientation and Gender Identity in Federal Surveys, IWG, 221 Improving Medicare Post-Acute Care Transformation (IMPACT) Act of 2014, 47, 82, 83, 84, 172 Improving Nursing Facility Outcomes using Real-Time Metrics (INFORM), 305 Improving the Quality of Care in Nursing Homes (IOM), 36, 115 Income, of diverse elders, 225 Income statement, 422 Incontinence conditions, 201 Incremental budgeting, 415–16 Independent living, 103–9; definition of, 103; history of, 103–5, 104; housing plus services programs, 105; new ­developments

in, 106–8; retirement communities, 105–6; settings, clients, ownership, and financing, 108, 109; Sweetwater ­Spectrum, 108; for veterans, 109 Indian Health Service (IHS), 228 Inequity, 376 Infectious disease, 195, 196, 208, 210, 340. See also COVID-19 pandemic INFORM. See Improving Nursing Facility Outcomes using Real-Time Metrics Information systems for electronic data collection, 143–44; electronic health record, 143; interoperability, 143; mHealth, 144; remote patient monitoring, 144; telehealth services, 143–44 Injection drug use (IDU), 207, 208, 209 Injury prevention, 195, 196 Inpatient rehabilitation facility (IRF), 73 Inpatient respite care (IRC), 172–73 Institute for Healthcare Improvement (IHI), 19, 169, 190, 318, 369, 442, 443, 453, 456 Institute of Medicine (IOM), 36, 38, 115, 219, 229, 376, 442 Instrumental activities of daily living (IADLs), 4 Intellectual wellness, 198, 198 INTERACT quality improvement program, 451 Interagency Working Group (IWG), 221 International Classification of Functioning, Disability, and Health (ICF), 13 International long-term care, 244–60; dementia and, global epidemic of, 256, 256– 57; global trends in population aging, 245–48; older population percentages by world regions, 246–47; public longterm care policies around the world, 248–56; shortage of long-term care workers (case study), 260–61 Interoperability, 143 Interview, 351 IOM. See Institute of Medicine IRC. See Inpatient respite care IRF. See Inpatient rehabilitation facility Ischemic heart disease, 46, 227

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Ishikawa, Kaoru, 443 Ishikawa diagram, 443–44, 459 IWG. See Interagency Working Group Iyashi, 234–35 Japan, mandatory long-term care insurance in, 250, 252–53, 407, 428 Jimmo v. Sebelius, 37, 134 Job analysis, 349 Job description, 349, 349 Jobs or occupations in LTSS, 334–37; administrative professionals, 337; clinicians, 335–36; direct care workers, 334; direct contact support workers, 334–35; social and behavioral services workers, 337. See also Staffing Johnson, Lyndon B., 33 Joint Commission: deemed status of, 116; definition of, 388; Joint Commission and accreditation (case study), 401; Nursing Care Certification, 116 Joint Commission Center for Transforming Healthcare, 448 Joint Commission on Accreditation of Healthcare Organizations, 388, 452 Jones, Dale, 207, 208, 211 Juran, Joseph M., 439, 440 Kaigo Hoken, 252 Kaiser Family Foundation, 338 Kennedy, Ted, 33 Kerr-Mills Act of 1960, 11 Klaussen, Paul, 111 Kübler-Ross, Elisabeth, 162–63 Laboratory, 306 Labor-Management Relations Act (LMRA), 346, 355 Labor union, 355 Latinos. See Hispanics/Latinos Laundry, 314 Laws and regulations affecting care transitions, 79–84; accountable care organizations, 81; Bundled Payment for Care Initiative Programs, 81; CommunityBased Care Transitions Program, 79;

511

Discharge Planning Rule, 83–84; Hospital Readmissions Reduction Program, 81–82; IMPACT Act of 2014, 83; Improving Medicare Post-Acute Care Transformation Act, 82; PAMA of 2014, 82; Protecting Access to Medicare Act, 82 Leadership: communication barriers and, 281–82; credibility of leader, 281; definition of, 270; ethics in, challenges to, 374–75; leadership and person-centered care (case study), 285–87; vs. management, 270–72; recruitment and retention as a priority in, 277; roles, 272–73; team, 278–80. See also Management LeadingAge, 1, 13 LeadingAge Ziegler 200 (LZ 200), 395 Lean model, 447–48 Legal issues in long-term care: Adult Protective Services, 379–80; civil law and, 367–68; criminal law and, 369; elder abuse, 378; Elder Justice Act of 2010, 378–79; end-of-life issues, 369–72; federalism in US and, 367; in human resources, 345–48, 346–47; Long-Term Care Ombudsman Program and, 377; overview of, 367 LGBTQ population, older: finances and, 229–30; first advocacy group for, 221; granting marriage equality to same-sex couples, 230; health among, 228–30; identity of, 224; marital status and, 225 Licensure, 389–99. See also Regulation of long-term care Life expectancy, 5–6; of American Indian or Alaska Native population, 228; COVID-19’s impact on, 5; definition of, 5; healthy, 5–6; long-term care and, 426; Medicare Hospice Benefit and, 169–70, 179; palliative sedation and, 176; population aging and, 245; of women vs. men, 6, 224 Life plan communities (LPCs): definition of, 103, 119; history of, 119; organization chart, 298; overview of, 293;

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­regulations, 394–95, 396; settings, clients, ownership, and financing, 119, 119–20 Life Safety Code, 312, 315, 454 Lifestyle choice, 299–300 Limiting health conditions, 205 Line departments, 294 Liquidity, 422 Livable Communities, 128, 135 Living will, 371 LMRA. See Labor-Management Relations Act Long-term acute care hospital (LTACH), 73 Long-term care (LTC): activities of daily living and, 292, 293, 294, 301, 408; after ACA, 30–56; consumers, in US, 4–9; cultural competence in, 354–55; definition of, 1, 4; delivery (See Longterm care service delivery); dimensions of, 3–25; financing (See Financing long-term care services); insurance, 250, 252–53, 407, 428; international, 244–60; legal and ethical issues in, 366–82; ombudsman, 377; operations, 291–326; policies around the world, 248–56; quality in, 397–99, 449–50; regulation of, 386–401; reporting in, 450–53; residential settings for, 102–23; safety in, 19, 453–56; workforce, 332–58. See also Long-term ­services and supports Long-term care communities, 291–326; active adult communities for those aged 55 or older, 293; administrator role and functions, 314–20; assisted living facilities, 293; business operations in (See Business operations in long-term care communities); delivery models for long-term care services, 294–95; how management style affects operations (case study), 323–26; independent living, 293; life plan communities, 293; occupancy rate during COVID-19, 424; skilled nursing facilities, 293; types of, 292–93 Long-term care consumers, in US, 4–9; adults with disabilities, 6–7, 7; ageism/ableism and, 8–9; older Americans, 4–6, 5

Long-Term Care Ombudsman Program (LTCOP), 131, 377, 398 Long-term care policies around the world, 248–56; aging in place, 249; Australia, combination of national insurance and means-tested programs in, 250, 253; China, formal long-term care system in, 250, 254–55; China, skilled nursing homes and senior living facilities in, 250, 251; examples of, 249–51, 250; global trends in long-term care policy and service development, 248–49; Japan and Germany, mandatory longterm care insurance in, 250, 252–53; share of long-term care recipients receiving care at home, 249; Sweden, universal long-term care coverage in, 250, 251–52; US, means-tested programs for low-income older adults in, 250, 253–54 Long-term care service delivery: ACA’s impact on, 31, 38–52; COVID-19’s impact on health disparities in, 12–13; diversity and (See Diverse elders); high-performance, defining, 38; history of (See Long-term care service delivery, history of); models for, 15–16, 17; theoretical foundations of, 13–15 Long-term care service delivery, history of, 9–13; fifth period, 11–12; first and second periods, 9–10; fourth period, 11; seventh period, 12–13; sixth period, 12; third period, 10–11; timeline of, 10 Long-term care workforce, 332–58; care aides in, 341–43; characteristics of, 340; composition of, 333–44; COVID-19’s impact on, 335, 340, 343–44, 357; definition of, 333; demand and supply for, 339–41; distribution of, 338, 338–39; jobs or occupations in LTSS, 334–37; shortage of (case study), 260–61; turnover, 343, 353. See also Human resources Long-term services and supports (LTSS): consumers of, in US (See Long-term care consumers, in US); COVID-19’s impact

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on, 1, 12–13; definition of, 4; delivery of (See Long-term care service delivery); history of, 33–37, 34; obstacles to access, 37–38; opportunities and challenges in the 2020s, 52–53; overview of, in US, 32; payers of, 19; providers of, 17–19; quality and safety in, 19 Long-Term Services and Supports State Scorecard, 398 Lou Gehrig’s disease, 202 LPCs. See Life plan communities LTACH. See Long-term acute care hospital LTC. See Long-term care LTCOP. See Long-Term Care Ombudsman Program LTSS. See Long-term services and supports LZ 200. See LeadingAge Ziegler 200 Maintaining Internal Systems and Strengthening Integrated Outside Networks (MISSION) Act of 2018, 148 Maintenance, 313 Malcolm Baldrige National Quality Award program, 448 Malcolm Baldrige National Quality Improvement Act, 448 Management: communication and, 281–83; definition of, 270; of financial resources, 319; how management style affects operations (case study), 323–26; of internal workforces, 276–78; organizational culture and culture change, 275– 76; organizational strategies, 274–75, 275; of physical environment, importance of, 313; of quality improvement, 319–20; recruitment and retention as a leader’s priority, 277; reports, 422, 423; stakeholders in planning process, 272, 273; strategic planning and, 274–75; team, 278; teamwork during the COVID-19, 280. See also Leadership Management by walking around (MBWA), 320 Managerial epidemiology, 207–8 Mandatory long-term care insurance, 250, 252–53, 407, 428

513

Marital status, of diverse elders, 224–25 Marketing and sales, 299–300 Material Safety Data Sheets, 314 MBWA. See Management by walking around MDS. See Minimum Data Set Means testing, 250, 253–54 Mediation, 355 Medicaid: advance care planning, 169; anniversary of, 12; benefits and programs, 410–11; Community First Choice Option program, 146; consumerdirected programs, 144–46; creation of, 114, 129; Deficit Reduction Act of 2005, 427; definition of, 11; eligibility, 253–54, 427; enactment of, 11; enrollment, 390; estate planning, 426–27; HCBS regulations, 128, 129, 134; HCBS waivers, 254, 410–11; hospice benefits, 51, 163, 166–67, 169, 170–73, 179; “look back” process, 426–27; means testing, 253, 410; partnerships for long-term care, 427; Public Law 92-603, 115; rural vs. urban elders, 18; spending projections, 410–11, 412. See also Centers for Medicare & Medicaid Services Medical aid-in-dying, 176 Medical director, 303–4 Medical/health centers, 136, 137 Medical home, 146 Medical malpractice, 368, 369 Medical model, 294 Medical record, 283, 299 Medical services in SNFs and ALFs, 303–5; assessments, 304–5; medical director and attending physicians, 303–4; physician extenders, 304 Medicare: anniversary of, 12; benefits and programs, 411–12; bundled payment initiatives, 46, 47, 81, 84, 117; Conditions of Participation for Nursing Homes, 104, 116, 451; coverage, 253; creation of, 114, 129; definition of, 11; donut hole provision, 43, 44–45, 411; enactment of, 11; enrollment, 390; Fee-for-Service Recovery Audits, 426;

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Home Health Value-Based Purchasing Model, 140–41, 147; Hospice Benefit, 163, 169–70, 172, 174–75, 178, 179; IMPACT Act, 47, 82, 83, 84, 172; Innovation Center, 19; medical homes, 146; Modernization Act of 2003, 33, 44; Multi-Payer Advanced Primary Care Practice demonstration, 74; PAC payments, 73; PAMA Act, 47, 82; Part A, 82, 169, 411, 412; Part B, 411; Part C, 411; Part D, 43, 44–45, 411; Payment Advisory Commission, 73, 141, 173, 414; prospective payment system for long-term care facilities, 412–14; Shared Savings Program, 48, 81; spending projections, 410; Trust Fund, 397. See also Centers for Medicare & Medicaid Services; Conditions of ­Participation “Medicare and Medicaid Programs; Reform of Requirements for Long-Term Care Facilities” (CMS), 450 Medicare-Medicaid Coordination Office (MMCO), 43–44 Memory care unit, 311 Mentoring, 278, 353 Metabolic conditions, 201, 203. See also Diabetes Methicillin-resistant Staphylococcus aureus (MRSA), 314 MFP. See Money Follows the Person MHealth, 144 Miller Amendment, 114–15 Minimum Data Set (MDS), 115, 302, 393, 394, 412, 449–50 Ministry of Civil Affairs, 255 Misdemeanor, 369 Mission, 274, 275 MISSION Act. See Maintaining Internal Systems and Strengthening Integrated Outside Networks Act of 2018 MMCO. See Medicare-Medicaid Coordination Office Money Follows the Person (MFP), 42, 145, 429 Moss amendments, 11, 388–89

MRSA. See Methicillin-resistant Staphylococcus aureus MS. See Multiple sclerosis MSDs. See Musculoskeletal disorders Multi-Payer Advanced Primary Care Practice demonstration, 74 Multiple sclerosis (MS), 202 Musculoskeletal disorders (MSDs), 203 NAB. See National Association of Long Term Care Administrator Boards National Academy of Medicine. See Institute of Medicine National Aging Network, 396–97 National Asian Pacific Center on Aging, 221 National Association for Hispanic Elderly, 221 National Association of Long Term Care Administrator Boards (NAB), 315 National Caucus and Center on the Black Aged, 221 National Center for Health Statistics, 138, 222 National Citizens’ Coalition for Nursing Home Reform, 399 National CLAS Standards, 232 National Committee for Quality Assurance, 442 National Consumer Voice for Quality LongTerm Care, 399 National Defense Authorization Act of 2008, 347 National Family Caregiver Support Program, 254 National Fire Protection Association, 312, 454 National Hospice and Palliative Care ­Organization, 163 National Housing Act of 1934, 104, 105, 130 National Housing Trust, 396 National Indian Council on Aging, 221 National Institute of Standards and Technology (NIST), 448 National Investment Center for Seniors Housing and Care (NIC), 119, 424 National Labor Relations Act (NLRA), 355

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National Nursing Home Quality Improvement (NNHQI) Campaign, 399 National Partnership to Improve Dementia Care in Nursing Homes, 202 National Quality Awards Program, 453 National Resource Center on LGBTQ Aging, 233 National Transitions of Care Coalition (NTOCC), 79, 80 Native Hawaiian and Other Pacific Islander (not Hispanic), 223 Naturally occurring retirement communities (NORCs), 106–7, 343 Neighborhood and built environment, as SDOH, 192–93, 193 Net income, 422 Net operating income, 422, 423 New Deal programs, 104, 105 New York City Welfare Department, 136 NHQI. See Nursing Home Quality Initiative NIC. See National Investment Center for Seniors Housing and Care 90-day notice requirement, 355 “90/7/3” informal plan, 254–55 NIST. See National Institute of Standards and Technology Nixon, Richard, 33–34, 35, 105, 377 NLRA. See National Labor Relations Act NNHQI Campaign. See National Nursing Home Quality Improvement Campaign Non-Hispanic Asian Americans, 224 Nonmaleficence, 376 Nonmedical home care, 140 Nonphysician in LTC settings, 336 Nonrebatable entrance fees, 120 NORCs. See Naturally occurring retirement communities Nosocomial infection, 314 No Wrong Door policy, 16 NP. See Nurse practitioner NTOCC. See National Transitions of Care Coalition Nurse practitioner (NP), 304 Nurses in LTC settings, 335 Nursing aides, 302–3 Nursing Care Certification, 116

515

Nursing home. See Skilled nursing facilities Nursing Home Compare website. See Care Compare website Nursing Home Quality Initiative (NHQI), 104, 115 Nursing Home Reform Act. See Omnibus Budget Reconciliation Act of 1987 Nursing Home Value-Based Purchasing Demonstration, 115 OAA. See Old Age Assistance; Older Americans Act OASIS. See Outcome and Assessment Information Set Obama, Barack, 33, 145 Obamacare. See Affordable Care Act of 2010 Obergefell v. Hodges, 228, 230, 347 Obesity, among older Hispanics/Latinos, 226–27 OBRA of 1981. See Omnibus Budget Reconciliation Act of 1981 OBRA of 1987. See Omnibus Budget Reconciliation Act of 1987 Occupational Safety and Health Act of 1970, 347, 348, 394 Occupational Safety and Health Administration (OSHA), 312, 314, 315, 347, 454 Occupational wellness, 198, 198 Occupations in LTSS. See Jobs or occupations in LTSS OECD. See Organisation for Economic Cooperation and Development Office of Management and Budget, 221 Office of Minority Health (OMH), 226–27, 232 Office of the State Long-Term Care Ombudsman, 377 Old Age Assistance (OAA), 9, 387 Old-age dependency ratio, 260 Older Americans: causes of death among, 6; educational attainment of, 4–5; estimated population of, in US, 4, 5, 219; life expectancy of, 5–6; long-term care consumers, 4–9 Older Americans Act (OAA), 131–32; ­A merican Rescue Plan of 2021 and, 12;

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anniversary of, 12; funding of, 33, 35, 132; grants, 387; home and communitybased services and, 396–97; Long-Term Care Ombudsman Program and, 131, 377, 398; overview of, 129, 131–32; passage of, 7, 11, 33, 129; purpose of, 33, 34; reauthorization of, 20, 35, 40, 106, 132, 398; sections of, 131; senior centers and, 136, 137 Older Americans Act Reauthorization Act of 2016, 398 Older racially and ethnically diverse adults. See Diverse elders Older Workers Benefit Protection Act of 1990, 346 Oldest old, 247–48 Olmstead v. L.C., 36, 128, 133 Ombudsman programs, 131, 398–99 OMH. See Office of Minority Health Omnibus Budget Reconciliation Act (OBRA) of 1981, 35–36 Omnibus Budget Reconciliation Act (OBRA) of 1987, 36, 115, 351, 389, 392–93, 449 Onboarding, 352 On Death and Dying (Kübler-Ross), 162–63 Operating budget, 415 Operating income, 416 Operating margin, 416 Oral conditions, 195, 196, 205 Organisation for Economic Co-operation and Development (OECD), 248 Organization charts and long-term care community structure, 294–95 OSHA. See Occupational Safety and Health Administration Osteoarthritis, 219, 226 Osteoporosis, 46, 195, 196, 203 Outcome and Assessment Information Set (OASIS), 450, 452 Ownership: adult day service, 138–39, 139; assisted living facilities, 112, 112–13; home care, 141–42, 142; independent living, 108, 109; life plan communities, 119, 119–20; senior center, 136–37, 137; skilled nursing facilities, 116, 116

PA. See Physician assistant PAC. See Post-acute care PACE. See Program of All-Inclusive Care for the Elderly PACTs. See Patient Aligned Care Teams Palliative care: for commonly occurring ­physical symptoms, 164–66; communication in, 167–69; core issues in, 163–77; cost analysis, 172–73; culturally sensitive palliative care (case study), 234–35; economic considerations, 169–73; ­ethical issues in, 175–76; interdisciplinary approach, 166–67; Medicare ­Conditions of Participation, 169–71; palliative care choices (case study); social issues, 177; spirituality and religion in, 176–77; theoretical and conceptual foundations, 161–63; therapy, 165 Palliative medicine, 161 Palliative sedation, 176 PAMA. See Protecting Access to Medicare Act of 2014 Pareto chart, 444, 461 Pareto principle, 444 Partnerships for long-term care, 427 PASRR. See Pre-Admission Screening and Resident Review Patient Aligned Care Teams (PACTs), 149 Patient Driven Payment Model (PDPM), 301, 302, 412–14, 413 Patient Self-Determination Act, 372 Payer mix, 416 Payroll, 299 PDCA. See Plan-do-check-act PDPM. See Patient Driven Payment Model Pension Protection Act of 2006, 347 PEPPER. See Program for Evaluating ­Payment Patterns Electronic Report Performance appraisal, 352 Performance Improvement Project (PIP), 451 Per patient day (PPD), 416, 423, 430, 430 Person-centered care, 275–76 Person-centered leadership, 276 Peters, Tom, 320 Pharmacy, 305–6

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Physical environment, 312–14; communities management, 313; housekeeping, 314; laundry, 314; Life Safety Code, 312; maintenance, 313; managing, importance of, 313 Physical wellness, 198, 198 Physician assistant (PA), 304 Physician-assisted death, 176 Physician-assisted euthanasia, 176 Physician-assisted suicide, 176 Physician extenders, 304 Physician Orders for Life-Sustaining Treatment (POLST), 175, 371 Physicians in LTC settings, 336 Pioneer Network, 117 PIP. See Performance Improvement Project Plaintiff, 367 Plan-do-check-act (PDCA), 439–40, 445–46, 446 Planned rounding to improve quality, 320 Planned virtual retirement communities (PVRCs), 107 Planning, in human resources, 345 Pneumonia, 203 Policy Framework on Active Ageing, 128 Policy issues, in financing long-term care services, 426–29; encouragement to privately finance long-term care, 427; federal spending limits, 426–27; new long-term care financing and delivery initiatives, 428–29; public long-term care insurance, 428 POLST. See Physician Orders for Life-Sustaining Treatment Population aging: definition of, 245; global trends in, 245–48; older population percentages by world regions, 246–47 Population health: definition of, 189; Healthy People program, 194–96, 194–96, 197; Population Health Model, 189, 190; public health and, 189; social determinants of health, 192–93, 193 Positive Response Initiative (PRI), 207–11 Post-acute care (PAC): care transitions and end-of-life care, 85; COVID-19’s impact on, 86; definition of, 73; future

517

of, 84–86; referrals and alternative payment models, 84; remote monitoring technologies, 85; social services, 86 Poverty: adults with disabilities and, 6; older racially and ethnically diverse adults and, 5; women and, 5 Power, Al, 202 PPD. See Per patient day Pre-Admission Screening and Resident Review (PASRR), 301 Pregnancy Discrimination Act of 1978, 346 President’s Commission for the Study of ­Ethical Problems in Medicine and ­Biomedical and Behavioral Research, 375 Pressure ulcers, 204 Preventive maintenance, 313 PRI. See Positive Response Initiative Private long-term care insurance, 408–9 Probationary period, 352–53 Professional nursing staff, 302 Profile of Older Americans (ACL), 222 Program for Evaluating Payment Patterns Electronic Report (PEPPER), 425–26 Program of All-Inclusive Care for the Elderly (PACE), 139–40 Protecting Access to Medicare Act (PAMA) of 2014, 47, 82 Public health, 189–90 Public Health Service Act, 397 Public Law 92-603, 115 Public long-term care insurance, 250, 252–53, 407, 428 PVRCs. See Planned virtual retirement communities QAPI. See Quality Assurance and Performance Improvement QI. See Quality improvement QIOs. See Quality improvement organizations QIS. See Quality Indicator Survey QMB. See Qualified Medicare Beneficiary QSW. See Qualified social worker Quadruple Aim, 70, 443 Qualified Medicare Beneficiary (QMB), 412 Qualified social worker (QSW), 306–7

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Quality: Crosby’s requirements of, 440, 441; definition of, 438 Quality Assurance and Performance Improvement (QAPI), 115, 450, 451–52, 452 Quality Control Handbook (Juran), 440 Quality improvement (QI): aims for, 442, 442; goal of, 443; history of, 439–40, 441; managing, 319–20; models (See Quality improvement models); principles for redesign, 442, 443; rounding, 320; tool (See Quality improvement tools) Quality Improvement Evaluation System, 393 Quality improvement models, 445–48; Baldrige Award, 448; DMAIR, 446–47; Lean, 447–48; plan-do-check-act, 439– 40, 445–46, 446; Six Sigma, 447 Quality improvement organizations (QIOs), 397 Quality improvement tools, 443–45, 459–64; cause-and-effect diagram, 443–44, 459; check sheet, 444, 460; control chart, 444, 461–62; flowchart, 445, 463–64; histogram, 444, 460; Pareto chart, 444, 461; scatter diagram, 444–45, 462–63 Quality Indicator Survey (QIS), 393 Quality in healthcare, 19, 441–53; activities and reporting in long-term care, 450–53; evolution of, 442–43; in longterm care, 397–99, 449–50; Medicare Requirements for Participation for Long-Term Care Facilities, 450; Minimum Data Set, 449–50; Nursing Home Reform Act, 449 Quality Is Free (Crosby), 440 Race: definition of, 220; distribution of Americans aged 65 or older by, 223, 223–24. See also Diverse elders RACs. See Recovery Audit Contractors RAHS. See Regional Academic Health System RAI. See Resident Assessment Instrument Random rounding, 320 RCA. See Root cause analysis RD. See Registered dietitian Rebalancing long-term care, 31

Rebatable entrance fees, 120 Reception or front desk, 295, 299 Reciprocity, 316 Recovery Audit Contractors (RACs), 426 Recruitment, 350 Regional Academic Health System (RAHS), 88–91 Registered dietitian (RD), 309 Regulation of long-term care, 386–401; accountability and quality, 397–99; assisted living communities, 393–94; HCBS programs, 396–97; housing for people living with disabilities, 395, 396; Joint Commission and accreditation (case study), 401; licensure, certification, and accreditation, 389–99; life plan communities, 394–95; Minimum Data Set, 115, 302, 393, 394, 412, 449–50; nursing homes, 390–91; OBRA 1987 regulations, 391, 392–93; origins of, 387–89; Quality Indicator Survey, 393 Rehabilitation Act of 1973, 35, 133 Rehabilitation services, 307–8; organization chart, 296; therapy services in residential care, 307–8; therapy services in skilled care, 307–8 Reimbursement in US, 407–14; government programs (Medicaid and Medicare), 409, 410–14; private sources of payment, 407–9 Remote patient monitoring (RPM), 144 Reporting in long-term care, 450–53; mandatory, 450–52; voluntary, 452–53 Resident Assessment Instrument (RAI), 450 Resident assessment nurse, 302 Resident care: in assisted living facilities, 303; in skilled nursing facilities, 301–3 Resident council, 319 Residential care, definition of, 103 Residential settings for long-term care services, 102–23; adult day service, 138–39, 139; assisted living facilities, 109–13, 112; history of residential long-term care options, 103; home care, 141–42, 142; independent living,

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Index

103–9, 109; international perspectives on residential long-term care, 120–21; life plan communities, 103, 119, 119–20; prospects for St. Peter’s Nursing and Rehabilitation Center (case study), 122–23; senior center, 136–37, 137; skilled nursing facilities, 113–18, 116 Resident rights, 374 Respiratory conditions, 203 Respiratory disease, 6, 195, 196 Restorative nursing, 303 Retention, 353–54; organizational culture and, 354; recognition and, 354; retaining certified nursing assistants (case study), 357–58; retention specialists and, 354 Reverse mortgage, 407 Right-to-work laws, 348 Risk management: definition of, 438; principles of, 439 Riswein Health Industry Investment, 251 Robert Wood Johnson Foundation, 427 Root cause, definition of, 454 Root cause analysis (RCA), 454–55, 455, 456 Rounding, 320 Routine home care (RHC), 172–73 RPM. See Remote patient monitoring Run chart, 444, 461–62 Safe serve, 309 Safety, in long-term care, 19, 453–56; Coumadin Controversy (case study), 458–59; COVID-19’s impact on, 438; definition of, 438; failure mode and effects analysis, 455–56; root cause analysis, 454–55, 455, 456 SAGE. See Services and Advocacy for GLBT Elders St. Christopher’s Hospice in London, 162 St. Peter’s Nursing and Rehabilitation Center (case study), 122–23 Sales or selling orientation, 299–300 SAMHSA. See Substance Abuse and Mental Health Services Administration Sanitary facility, definition of, 314 SAP. See Single access point

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SARS CoV-2 (coronavirus). See COVID-19 pandemic SASH. See Support and Services at Home Saunders, Cicely, 162 SCAN Foundation, 398 Scatter diagram, 444–45, 462–63 Schizophrenia/other psychotic disorders, 46 SCI. See Spinal cord injury (case study) Scope of practice, 307 Screening, 351 SDOH. See Social determinants of health Section 8 Housing Choice voucher program, 396 Section 8 housing initiative, 105 Section 398 of the Public Health Service Act, 397 Section 811 Supportive Housing for Persons with Disabilities program, 396 Section 1886(q) of SSA (HRRP), 81–82 Section 1915 waivers, 11, 35, 129, 134, 145 Self-directed services. See Cash and Counseling Senior center, 136–37; appeal of, to all groups of older adults, 137; COVID-19’s impact on, 137; definition of, 136; history of, 136; settings, clients, ownership, and financing, 136–37, 137 Senior veterans, serving (case study), 148–52; background, 148–49; “Choose Home” model and, 150, 151; plan for senior services, 151–52; shifting from hospital focus to home-based orientation, 150; strategies, 149–50 Sensory conditions, 204 Services and Advocacy for GLBT Elders (SAGE), 221, 229 Settlement, 425 Seven stages of grief, 163 Shewhart, Walter A., 439–40, 445 Single access point (SAP), 16, 40–41 Six Sigma, 447, 456 60-day notice requirement, 355 Skilled nursing facilities (SNFs), 113–18; assessments in, 304; assistant ­director of nursing, 302; care transition services, 117; culture change movement

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Index

in, 117–18; definition of, 113; developments in, 117; director of nursing, 301–2; feeding assistants, 303; history of, 114–16; medical services in, 303–5; medication challenges in, 305; nursing aides, 302–3; organization chart, 296; overview of, 293; person-centered care in, 117; professional and technical nursing staff, 302; regulation of, 390–91; resident assessment nurse, 302; resident care in, 301–3; settings, clients, ownership, and financing, 116, 116; social services in, 306–7; standardizing quality assessment and assurance in, 451–52, 452; statistics on residents of, 114 Skilled Nursing Facility Value-Based Purchasing Program, 82 Skin conditions, 204 SMART objectives, 211 SNFist physicians, 72 SNFs. See Skilled nursing facilities Social and community context, as SDOH, 192–93, 193 Social centers, 136, 137 Social determinants of health (SDOH), 192–93, 193; domains, 192–93, 193; initiatives, 135 Social media marketing, during COVID-19, 300 Social model, 294 Social policy and the development of HCBS programs, 128–36; community services, 129–32; services for people living with disabilities, 132–35 Social Security Act (SSA): anniversary of, 12; on home and community-based services timeline, 130; Hospice Quality Reporting Program, 450; on long-term care options timeline, 104; Medicare and Medicaid programs established, 388; Miller Amendment to, 114–15; Moss amendments to, 11, 388–89; Old Age Assistance grants, 387; passage of, 10, 105, 114, 129; payments to LTC institutions and facilities permitted by, 10; retirement communities and, 105–6;

Section 1886(q) of (HRRP), 81–82; Section 1915 waivers to, 11, 35, 129, 134, 145; Title XX program and, 128, 132 Social Security Administration, 37 Social services in SNFs, 306–7 Social services workers, 337 Social wellness, 198, 198 Socioeconomic factors influencing longterm health needs of diverse elders, 227, 228 Southeast Asia Resource Action Center, 221 South Korea, mandatory long-term care insurance in, 254, 407, 428 SPC. See Statistical process control Specialized centers, 136, 137 Special populations, coordinating care for (case study), 88–91, 91 Spencer Center, 88–91 Spend-down form, 416, 421 Spinal cord injury (SCI) (case study), 88–91, 91 Spinal stenosis, 203 Spirituality, definition of, 176–77 Spiritual wellness, 198, 198 SSA. See Social Security Act Staff departments, 294 Staff functions, 295 Staffing, 345, 348–51; compensation, 350; definition of, 349; interviews, 351; job analysis, 349; job descriptions, 349; recruitment, 350; screening of applicants, 351. See also Jobs or occupations in LTSS Stakeholders: in conflict management, 283; interest of, communication and, 282; in planning process, 272, 273 Starlight Centers, 255 Star Light project, 255 Statement of cash flows, 422, 423 State Operations Manual (CMS), 390, 451 Statistical process control (SPC), 440 Stereotyping, 8 Strategic human resources management, 348 Strategic planning: definition of, 274 Strike, 355

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Index

Stroke, 6, 46, 47, 73, 113, 122, 165, 196, 196, 201, 202, 203, 209, 219, 226–28, 307, 458 Structure and governance for sustainability (case study), 207–12. See also HIV/ AIDS Structure-process-output model, 441 Substance abuse. See Drug abuse/substance abuse Substance Abuse and Mental Health Services Administration (SAMHSA), 205, 210 Substance use problems, 205 Sundowning, 138 Supplemental Security Income program, 11, 34, 37, 88, 129 Supply chain, 306 Support and Services at Home, 74 Supportive Housing for the Elderly, 10 Support staff in LTC settings, 337 Sweden, universal long-term care coverage in, 250, 251–52 SWOT analysis, 274–75 Syringe access, 208 Taft-Hartley Act. See Labor-Management Relations Act Tax Equity and Fiscal Responsibility Act, 163 TBIs. See Traumatic brain injuries TCU. See Transitional care unit Team meetings, 316–18 TeamSTEPPS Long-Term Care program, 454 Technical nursing staff, 302 Telehealth services, 143–44 Therapeutic diet, 309 Therapeutic recreation, 310–11 Therapists in LTC settings, 336 Therapy services: in residential care, 307–8; in skilled care, 307–8 Thomas, Bill, 118 Ticket to Work and Work Incentives Improvement Act, 37 Ticket to Work program, 37 Title VII, Civil Rights Act of 1964, 346, 347 Title XXIX of the Public Health Service Act, 397 Title XX program, 128, 132

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To Err Is Human (IOM), 442 Tort, 368 Total pain management, 164 Total Quality Control (Feigenbaum), 440 Total quality management (TQM), 441 Total rewards, 350 Town hall meeting, 318 TQM. See Total quality management Training and development, in human resources, 345, 352 Transitional care unit (TCU), 117 Transitions coach, 76 Transitions of care. See Care transitions Traumatic brain injuries (TBIs), 205 Triage, 376 Triple Aim, 70, 75, 190, 192, 442, 443 Truman, Harry S., 105 Trust, 408 Turnover, 343, 353 UHCDA. See Uniform Health Care Decisions Act Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care (IOM), 219 Uniformed Services Employment and Reemployment Rights Act (USSERA) of 1994, 346 Uniform Health Care Decisions Act (UHCDA), 372 Unit dose, 305, 306 United States: federalism in, 367; HCBS in, compared to other countries, 128; LTSS in, overview of, 32; means-tested programs for low-income older adults in, 250, 253–54; population of diverse elders in, proportion of, 219, 223; population of older Americans in, estimated, 4, 5, 219; private long-term care insurance in, 408–9; reimbursement in, 407–14; states with highest number of accredited CCRCs, 396. See also Older Americans; Older Americans Act (OAA) US Bureau of Labor Statistics (BLS), 315, 340 US Census Bureau, 221, 222, 338

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Index

US Department of Defense, 454 US Department of Health and Human Services (HHS), 7, 31, 33, 114, 222; Administration for Community Living, 16, 40, 133, 134, 222, 397; Healthy People program, 192, 194–96, 194–96, 197; HIPAA of 1996, 34, 115, 347, 368, 397; Intermediary Letter 371, 114; Office of Minority Health, 226–27, 232. See also Administration on Aging US Department of Housing and Urban Development, 396 US Department of Justice, 426 US Department of Veterans Affairs, 6, 109, 144, 407; No Wrong Door policy, 16; Veterans Health Administration, 148–52 US Senate Special Committee on Aging, 37, 111 Universal long-term care coverage, 251–52 Urinary incontinence, 201 Urinary tract infection (UTI), 201 USSERA. See Uniformed Services Employment and Reemployment Rights Act of 1994 UTI. See Urinary tract infection Values, 274 Variable costs, 423 Variance analysis, 422, 423 Veterans: independent living for, 109; serving senior veterans (case study), 148–52 Veterans Health Administration (VHA), 148–52; “Choose Home” model and, 150, 151; GECDAC and, 150–51; Geriatrics and Extended Care services, 149; GRECCs and, 150. See also Senior veterans, serving (case study) Veterans Integrated Service Network (VISN), 151 VHA. See Veterans Health Administration

Villages. See Planned virtual retirement communities Viral conditions, 204. See also COVID-19 pandemic; HIV/AIDS Vision, organizational, 274 Vision problems, 204 VISN. See Veterans Integrated Service Network Vitality Center, 251 Waterman, Robert, 320 Weinberg Center for Elder Justice, 379 Wellness, dimensions of, 198, 198 Wellness programs, 196, 198, 198 Whitefield Health System (WHS), 207–12 WHO. See World Health Organization WHS. See Whitefield Health System Wilson, Keren Brown, 111 Women: employment opportunities for, by WWII, 387; life expectancy of, 6, 224; older LGBTQ, 229; in poverty, 5 Worker Adjustment and Retraining Notification Act of 1989, 347 Workers’ compensation, 348 Work team, 279 World According to Dr. El (Barbera), 292 World Health Organization (WHO): agefriendly communities and, 135; on coordinating HCBS, 248; on deaths from chronic diseases, 199; dimensions of disability recognized by, 14; disability defined by, 219; on healthy life expectancy, 5–6; International Classification of Functioning, Disability, and Health, 13; Policy Framework on Active Ageing, 128; social determinants of health and, 135 Zero-based budgeting, 416 Zero defects, 440, 441 Zodpey, Shay, 207, 208, 211

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ABOUT THE EDITORS

Mary Helen McSweeney-Feld, PhD, LNHA, FACHCA, is a tenured associate professor and director of both the MS in Health Science Program and the Clinician Administrator Transition Program at Towson University in Towson, Maryland. She has numerous publications in the healthcare and long-term care administration field specializing in healthcare emergency preparedness, healthcare finance, and long-term care administration issues. She has been involved in a variety of national and state grant and demonstration programs for Alzheimer’s disease, long-term care direct care workers, and emergency preparedness for longterm care administrators. She has a PhD in Health Economics from the Graduate Center of the City University of New York and a master’s degree in Economics from Columbia University. She is a Fellow of the American College of Health Care Administrators and is a licensed nursing home administrator. Carol Molinari, PhD, is a tenured professor in health systems management at the University of Baltimore, where she teaches undergraduate and graduate courses. Dr. Molinari’s research spans several areas, including diversity management, cultural competence, healthcare governance, and online learning and pedagogy. She has contributed policy commentaries related to major US healthcare reform efforts, including the Affordable Care Act. Dr. Molinari has served as a governing board member of the Association of University Programs in Health Administration, as a trustee of a large integrated healthcare system in the Northwest, as a director on several community boards, and as a consultant and reviewer to health management programs. She has a PhD in Health Policy and Management from the Johns Hopkins School of Hygiene and Public Health, an MBA from the University of Baltimore, and an MPH from the University of North Carolina at Chapel Hill. 523 Copying and distribution of this PDF is prohibited without written permission. For permission, please contact Copyright Clearance Center at www.copyright.com.

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ABOUT THE CONTRIBUTORS

Patricia M. Alt, PhD, is professor emerita in the Department of Health Sciences at Towson University in Towson, Maryland. Her primary areas of interest are health policy—particularly policies about older adults and the regulation of human subject research—and legal and ethical issues in healthcare administration and clinical practice. She previously served as aging policy coordinator for the Maryland Department of Health and Mental Hygiene. She earned her PhD in political science from the University of North Carolina at Chapel Hill. Theresa “Teta” Barry, PhD, is an associate professor of healthcare administration in the School of Global Business at Arcadia University in Glenside, Pennsylvania. She currently serves as the program director for the undergraduate program in healthcare administration and teaches courses in healthcare organization and management. Dr. Barry’s passion for advocacy on behalf of elderly people is evident in her extensive research on enhancing the quality of long-term care services in relation to the direct care workforce, and she has additional clinical experience and nursing home administrator training. She earned her PhD in health policy and administration from the Pennsylvania State University in University Park, Pennsylvania. She also received her master of healthcare administration degree from Penn State. Mary W. Carter, PhD, is the retired program director for the Gerontology Program at Towson University in Towson, Maryland. Dr. Carter’s work draws on large administrative databases to investigate variations in healthcare use and costs, quality, and outcomes among older adults. Her areas of interest include health policy, adverse medical events across medical 525 Copying and distribution of this PDF is prohibited without written permission. For permission, please contact Copyright Clearance Center at www.copyright.com.

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settings, long-term outcomes following unintentional injury, and emergency department use following intentional self-harm. She received her PhD in gerontology from the University of Massachusetts Boston and completed postdoctoral work in health services research at the University of Minnesota. Christina M. Daley, PhD, is an associate teaching professor in the Department of Health Policy and Administration at Penn State University in State College, Pennsylvania. Her area of research expertise is hospice and palliative care services delivery. She has a PhD in nonprofit administration and leadership from Indiana University of Pennsylvania and a master of healthcare administration degree from Penn State. Philip DuBois, MS, LNHA, FACHCA, has been a nursing home administrator in Maine, Georgia, and Arizona and has been the program manager of long-term care administration programs as well as adjunct faculty in aging services programs. In 2013, he received the Outstanding Educator in Long-Term Care Administration award from the American College of Health Care Administrators, of which he is a fellow. He earned his MS from California College for Health Sciences and is a licensed nursing home administrator. Cyrus Y. Engineer, DrPH, is a professor of the practice and associate chair of academic programs at Johns Hopkins Bloomberg School of Public Health in Baltimore, Maryland. He served as senior Baldrige examiner for the Maryland Performance Excellence Foundation and is certified as an auditor for ISO 9000 quality management systems. His areas of interest include the study of high-performing healthcare organizations. He holds a DrPH in healthcare management and leadership and an MHS in health finance and management from Johns Hopkins University. Sharon Eyster, MS, LBSW, CNHA, is chief operations officer and vice president of operations for United Church of Christ Homes in Camp Hill, Pennsylvania. She is a board member of the American College of Health Care Administrators. She received an MS in health law and policy from Hofstra University. With a BSW from Bloomsburg University of Pennsylvania, she is a licensed baccalaureate social worker. She is also a certified nursing home administrator. Brian Feld, MSW, is an adjunct faculty member in the Department of Health Sciences at Towson University in Towson, Maryland. He has worked in long-term care discharge planning and transitional housing for long-term care facilities as well as the Veterans Administration. He holds a master of social work degree from the Wurzweiler School of Social Work at Yeshiva University in New York City, where he was a Dean’s Scholar.

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About the Contributors

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Laurencia Hutton-Rogers, DrPH, is the program manager for the Maternal, Infant, and Early Childhood Home Visiting Program at the Maryland Department of Health in Baltimore and an adjunct faculty member in the Department of Health Sciences at Towson University in Towson, Maryland. She has a doctorate in public health from Morgan State University. Jenny Inker, PhD, LALFA, is an assistant professor and codirector for the Assisted Living Administration Program (accredited by the National Association of Long Term Care Administrator Boards) in the Department of Gerontology at Virginia Commonwealth University in Richmond. Her area of research expertise is disrupting ageism in long-term care settings through workforce development and leadership. She earned a PhD in healthrelated sciences and an MS in gerontology from Virginia Commonwealth University, an MBA in healthcare administration from George Washington University, and an MSc in housing and strategic management from the University of Wales, Cardiff. Dr. Inker is licensed assisted living facility administrator. Christopher Johnson, PhD, is a clinical professor of sociology at Texas State University in San Marcos. He developed the first online master of science in dementia and aging studies degree in the United States at Texas State University, and he developed the first memory care neighborhood in the state of Louisiana. Dr. Johnson holds a PhD in sociology with a major in aging and a minor in social psychology. He taught at the University of Stirling in Scotland and its Iris Murdoch Dementia Centre prior to his hire at Texas State. He has consulted on the development and design of hundreds of memory care neighborhoods in the Deep South. Jennifer Johs-Artisensi, PhD, is a professor in the College of Business at the University of Wisconsin–Eau Claire and the director of the university’s Healthcare Administration Program (accredited by the National Association of Long Term Care Administrator Boards). She also serves as assistant director of the Center for Health Administration and Aging Services Excellence. She holds a PhD in clinical health psychology and behavioral medicine from the University of North Texas and an MPH in health behavior and health administration from the University of North Texas Health Science Center. Robert R. Kulesher, PhD, FACHE, is a professor in the Department of Health Services and Information Management at East Carolina University in Greenville, North Carolina. A health policy specialist and an experienced hospital and nursing home administrator, he focuses his research on the impact of Medicare reimbursement on healthcare providers. He received his master of health administration degree from Washington University in St. Louis, Missouri. Following a 20-year career in healthcare administration, he earned a PhD

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in urban affairs and public policy from the University of Delaware. He is a fellow of the American College of Healthcare Executives. Sandi Lane, PhD, LNHA, FACHE, is an associate professor and director of the Masters in Health Administration program at Appalachian State University in Boone, North Carolina. Dr. Lane’s operational experience includes acute care, long-term care, and ancillary services. She has served on the Greater Charlotte Healthcare Executives Group board and the American College of Healthcare Executives Examination Committee, and she is an academic reviewer for the National Association of Long-Term Care Administrator Boards. She has a PhD in health services research from the University of North Carolina at Charlotte. Dr. Lane is licensed nursing home administrator and a fellow of the American College of Healthcare Executives. Patrick Nicovich, MPA, LNHA, teaches in the long-term care track in the School of Health Professions at the University of Alabama at Birmingham and has been a licensed nursing home administrator in the state of Alabama since 1979. He has more than 50 years’ senior management experience in a variety of settings along the continuum of senior care, including assisted living, skilled nursing, and life plan communities. He is an experienced educator in healthcare management, law and ethics, and public management. He holds a master of public administration degree from the University of Tennessee. Jennifer Pryor, MS, LALFA, is a program director and codirector of the Assisted Living Administration Program (accredited by the National Association of Long Term Care Administrator Boards) in the Gerontology Department at Virginia Commonwealth University in Richmond. Her area of expertise is long-term care organizations, with a particular emphasis on the assisted living industry as well as administration, management, and leadership in long-term care. She holds an MS in gerontology from Virginia Commonwealth University and is a licensed assisted living facility administrator. Emiko Takagi, PhD, is an assistant professor in the Gerontology Program at San Francisco State University. Dr. Takagi has published numerous articles on informal and formal caregiving issues in Japan, and she is a member of the Global Aging Committee in the Association of Gerontology in Higher Education. She holds a PhD in sociology from the University of Southern California and an MS in gerontology from the University of Arizona.

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