Principles and Practice of Psychiatric Rehabilitation: Promoting Recovery and Self-Determination [3 ed.] 1462553702, 9781462553709

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Principles and Practice of Psychiatric Rehabilitation

Principles and Practice of

PSYCHIATRIC

REHABILITATION T H I R D

E D I T I O N

Promoting Recovery and Self-Determination

Patrick W. Corrigan Nicolas Rüsch Amy C. Watson Kristin Kosyluk Lindsay Sheehan

THE GUILFORD PRESS New York London

To mentors, colleagues, and friends with lived experience of recovery, who have been essential teachers as we have come to understand psychiatric rehabilitation

Copyright © 2024 The Guilford Press A Division of Guilford Publications, Inc. 370 Seventh Avenue, Suite 1200, New York, NY 10001 www.guilford.com All rights reserved No part of this book may be reproduced, translated, stored in a retrieval system, or transmitted, in any form or by any means, electronic, mechanical, photocopying, microfilming, recording, or otherwise, without written permission from the publisher. Printed in the United States of America This book is printed on acid-free paper. Last digit is print number:  9 8 7 6 5 4 3 2 1 The authors have checked with sources believed to be reliable in their efforts to provide information that is complete and generally in accord with the standards of practice that are accepted at the time of publication. However, in view of the possibility of human error or changes in behavioral, mental health, or medical sciences, neither the authors, nor the editor and publisher, nor any other party who has been involved in the preparation or publication of this work warrants that the information contained herein is in every respect accurate or complete, and they are not responsible for any errors or omissions or the results obtained from the use of such information. Readers are encouraged to confirm the information contained in this book with other sources. Library of Congress Cataloging-in-Publication Data Names: Corrigan, Patrick W., author. Title: Principles and practice of psychiatric rehabilitation : promoting recovery and selfdetermination / Patrick W. Corrigan, Nicolas Rüsch, Amy C. Watson, Kristin Kosyluk, Lindsay Sheehan. Description: Third edition. | New York, NY : The Guilford Press, [2024] | Includes bibliographical references and index. Identifiers: LCCN 2023045081 | ISBN 9781462553709 (paperback ; acid-free paper) | ISBN 9781462553716 (hardcover ; acid-free paper) Subjects: BISAC: PSYCHOLOGY / Psychopathology / Schizophrenia | MEDICAL / Nursing / Psychiatric & Mental Health Classification: LCC RC439.5 .P74 2024 | DDC 616.89—dc23/eng/20231103 LC record available at https://lccn.loc.gov/2023045081 Guilford Press is a registered trademark of Guilford Publications, Inc.

AboUT THE AUTHoRS

Patrick W. Corrigan, PsyD, is Distinguished Professor of Psychology at the Illinois Institute of Technology. Previously, he was Professor of Psychiatry and Executive Director of the Center for Psychiatric Rehabilitation at the University of Chicago. Dr. Corrigan has spent most of his career providing and evaluating services for people with psychiatric disabilities. He has served as principal investigator of the National Consortium on Stigma and Empowerment and led the team that developed the Honest, Open, Proud program. In addition to the impact of stigma on psychiatric disabilities and rehabilitation, his research interests center on the role of social determinants of health such as ethnicity, gender identity, poverty, and criminal justice involvement. The author of more than 450 journal articles and 20 books, Dr. Corrigan is editor of the journal Stigma and Health. Nicolas Rüsch, MD, is Professor of Public Mental Health at Ulm University in Ulm, Germany, and Consultant Psychiatrist in a home treatment team in nearby Günzburg. Dr. Rüsch is one of the editors of the journal Social Psychiatry and Psychiatric Epidemiology. His research interests include mental illness stigma; antistigma interventions, such as the Honest, Open, Proud program; self- concept and disclosure of mental illness; and mental illness and unemployment. Amy C. Watson, PhD, is Professor in the School of Social Work at Wayne State University, Michigan. She is a past president of CIT International and is currently President of Crisis Response Programs and Training. Dr. Watson’s work since the 1990s has centered on people with psychiatric disabilities who have contact with the criminal legal system, with a focus on police encounters and the Crisis Intervention Team (CIT) model. She is currently examining models to reduce/eliminate the role of police in mental health crisis response. Dr. Watson has authored over 100 publications. Earlier in her career, she worked as a probation officer on a team serving clients with serious mental illnesses. Kristin Kosyluk, PhD, is Assistant Professor of Mental Health Law and Policy at the University of South Florida, Faculty Affiliate of the Louis de la Parte Florida Mental Health Institute, and Director of the Stigma Action Research (STAR) Lab. Her research focuses on understanding and addressing the stigma surrounding behavioral health conditions. More recently, Dr. Kosyluk has begun to work in the areas of stigma around HIV and substance use. She is also researching the impact of technology-based antistigma interventions. She is Vice President of the National Alliance on Mental Illness–Hillsborough County and board member at large of the Florida Rehabilitation Association, and serves on the editorial board of Stigma and Health. v

vi

About the Authors

Lindsay Sheehan, PhD, is Assistant Professor of Psychology and Associate Director of the Center on Health Equity, Education, and Research at the Illinois Institute of Technology. With over 30 peer-­reviewed publications, Dr. Sheehan conducts research on the stigma of mental illness, suicide, health equity, and the evaluation of peer services for people with mental illness. She developed the Inspiring Change community-based participatory research (CBPR) curriculum and has extensive experience implementing CBPR programming. She is director of a state-­funded program to train certified recovery support specialists and certified peer recovery specialists. Dr. Sheehan also has a decade of experience working in community mental health care, including provision of counseling, case management, residential support, and vocational training services.

PR EFAC E

W

ho are people with psychiatric disabilities? How do these disabilities interrupt the successful achievement of their life goals? What are the fundamental principles that guide rehabilitation, and what are the basic practices that embody these principles? Complex questions like these are the foundation of this book, which seeks to educate readers about various frameworks for understanding the disabilities that challenge many with mental illness. Approaches to psychiatric rehabilitation are grounded in recovery: The ups and downs of mental health with its challenges are nonetheless a process characterized by hope and aspiration. Self-determination is fundamental to this process. The heart of this book describes the repertoire of services, interventions, and resources that help people enjoy recovery.

AN EVOLVING PERSPECTIVE Psychiatric rehabilitation is maturing at light speed. In the past three decades, constructs related to recovery, hope, self-determination, and well-being have joined intervention strategies that teach skills and provide support to help people achieve their goals. Note that the kinds of goals driving psychiatric rehabilitation are the same as those that are priorities for most adults: employment, education, residence, relationships, and health (both physical and mental health). Proponents of rehabilitation and recovery avoid framing life problems and objectives as somehow different from and less than the “norm.” A lesson stressed throughout this book is that the challenges faced by persons with psychiatric disabilities are not distinct from, but rather fall on a continuum with, challenges faced by the rest of the population. Hence, broad practices constituting psychiatric rehabilitation are equally meaningful for the general population in dealing with the day-to-day problems that pop up in everyone’s lives. Let us consider in more depth two principles that are central to rehabilitation: selfdetermination and recovery. The fi rst principle is simply that people with disabilities should have personal power over all aspects of their lives and rehabilitation. This kind of self-determination ensures the development of life decisions that are consistent with the individual’s overall sense of self. Misguided programs that take away personal decision making not only undermine the possible benefits of rehabilitation but also may actually harm the person. Related to empowerment is the principle of recovery; multiple models describe recovery and include recovery as outcome versus recovery as process. Recovery as outcome means that the symptoms, dysfunctions, and impairments experienced by many people with serious mental illness will remit entirely, and that these persons will acquire vii

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Preface

personally satisfying lives. Long-term follow-up research that tracks people with serious mental illnesses for 30 years or more shows that large numbers of these individuals overcome their disabilities altogether. In addition, recovery is viewed as a process and reintroduces important values into rehabilitation such as hope and well-being. For too long, mental health services have been dominated by gloomy prognoses that robbed people of their future. Serious mental illnesses such as schizophrenia were known as “kiss-ofdeath” diagnoses, in which any plans made for the future were set aside so that people could assume the feckless role of patient. This perspective is now replaced with hope that people can and will master their disabilities and resume the pursuit of their individual priorities. It is driven by the preposition despite; despite having ongoing symptoms and disabilities, people with serious mental illness can pursue the breadth of their goals, and should do so within an empowering service system. Many of the barriers associated with psychiatric disabilities are not explained solely by impairments that result from mental illness; they also evolve from the community’s reactions to people with these impairments—that is, from stigma. Many people with psychiatric disabilities are unable to find satisfactory jobs or good housing because of the prejudices of employers and landlords. Social determinants of health are additional factors that impact recovery. These include variables that reflect diversity, equity, and inclusion (e.g., ethnicity, religion, gender identity, sexual orientation, and age) and social disadvantage: poverty, homelessness, and criminal justice involvement. Additional solutions to limitations caused by psychiatric disabilities are targeting insidious effects of stigma and discrimination.

AN EVIDENCE BASE Like many other areas of health care, mental health services have had their share of principles touted as important to the field without research to support them. Without these data, people with disabilities may waste their time on irrelevant services or participate in treatments that are actually harmful. For example, approaches of the past such as mesmerism, phrenology, and psychoanalysis have no utility in understanding psychiatric disabilities and yield no benefits for addressing the needs of people with serious mental illness. Interventions such as hydrotherapy, hypnosis, and insulin shock therapy have actually harmed people. Most examples like these were based on good intentions of mental health care providers who relied on misunderstood clinical experience to support their perspectives. We now know that good intentions and clinical lore are not sufficient for discerning what is and is not helpful in treating serious mental illness. Practices highlighted in this book rest on sound evidence (i.e., these approaches have survived empirical tests across multiple studies). Evidence-based approaches to the development of rehabilitation practices are not new ideas; many research programs over the past 50 years have adopted such paradigms. What is new is the public embrace of evidence and research in identifying practices. Mental health authorities are looking closely for the evidence base that will enable them to discover effective interventions. Over the next decade, we should expect to find more practices that have met the evidence-based standard. Equally important in the evidence-based agenda are dissemination strategies. How do real-world care providers learn evidence-based approaches and then incorporate them into day-to-day practices? Future research on technology transfer that tests dissemination strategies is important. Specification of how practices vary with macro-level variables

Preface ix 

such as ethnicity and the public mental health care system will play a prominent role in the further development of dissemination.

WHO ARE OUR READERS? We had three groups in mind as we updated this book. First, we wished to educate students of psychiatric rehabilitation. Several academic disciplines are dedicated to understanding psychiatric disabilities; they are embedded within mental health counseling, psychology, social work, occupational therapy, nursing, and psychiatry programs. Students who will be future practitioners will benefit from the book’s cautious review of principles and practices. Some students are also training as social scientists. The volume’s focus on evidence-based approaches is an excellent model for nascent investigators. Students here may also include people with psychiatric disabilities. As addressed in several places in the book, peer recovery support providers offer a special relevance and elegance to rehabilitation programs. There seems to be a form of affirmative action impelling mental health care programs to hire more people with psychiatric disabilities as job specialists, education coaches, and case managers. The information provided in this text should enhance the career goals of students with psychiatric disabilities. This book is also meant to be a sourcebook for practitioners. It is a comprehensive review of rehabilitation principles and practices. A practitioner with this book on the shelf has a well-­organized resource to review when questions emerge. It is equally relevant to administrators whose responsibility includes identifying the best interventions. The literature review in this book provides the essential research foundation for administrative decisions.

ADDENDUM FOR THE THIRD EDITION Our understanding of psychiatric disabilities and rehabilitation continues to evolve. Much has happened since the publication of the second edition of Principles and Practice of Psychiatric Rehabilitation. A careful review of the empirical literature since then guided this revision. Notable additions include the following:

• Understanding life goals by diversity, equity, and inclusion. • Recognizing barriers wrought by social disadvantage such as poverty and criminal justice involvement.

• Describing intersectionality of multiple diversity and disability experiences. • Broadening focus to include physical health and wellness. • Grounding innovations with community-based participatory research. • Expanding the workforce through peer recovery support providers. The book is illustrated with personal experiences of people with lived experience, service providers, or agencies, written for readers at all levels who want sense of the ideas herein “in action.” All illustrations are composites of individuals whose personal information, including demographic details, has been altered to protect their identities. A note on language. How do we refer to the people who constitute the main group of this book’s subjects: clients, patients, service recipients? We adopt what has become standard usage in recovery-based approaches: Because “they” are people first, person-first

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Preface

language is used. The book refers to individuals with disabilities, people with schizophrenia, or persons who are homeless, for example. Other subjects of this book are usually referred to as service providers. We sometimes depart from this generic category because people from varied backgrounds—rehabilitation counseling, psychology, psychiatry, nursing, or social work—may provide rehabilitation services. We are also mindful of pronouns throughout, respecting both traditional and nonconforming approaches to gender identity. In this book we use the pronouns they/them/their.

ACKNOWLEDGMENTS Feedback from several experts in the field contributed to the development of this edition. These included Deborah Becker, Jeffrey Draine, Larry Davidson, Ken Gill, Howard Goldman, Michael Green, Paul Holmes, Chow Lam, Jon Larson, Nannette Larson, Robert Liberman, Bruce Link, Daniel Luchins, Stanley McCracken, Dinesh Mittal, Scott Morris, David Penn, Bernice Pescosolido, Jo Phelan, Carlos Pratt, Lisa Razzano, Mark Salzer, Andrea Schmuck, Georg Schomerus, Katrina Scior, David Smelson, Karyn Bolden Stovall, Hector Tsang, and Charles Wallace. We appreciate the wisdom of coauthors from the first edition: Kim Mueser, Gary Bond, Robert Drake, and Phyllis Solomon. From P. W. C.: I have been privileged to mentor and guide several scholars over my career who have gone on to make their mark in psychiatric rehabilitation. These include the four coauthors of this book—Kristin Kosyluk, Nicolas Rüsch, Lindsay Sheehan, and Amy Watson—some for more than 30 years! Thank you dearly for your partnerships.

CoNTENTS

PA R T I

UNDERSTANDING PSYCHIATRIC DISABILITIES IN THE PERSON AND THE WORLD CHAPTER 1

Who Are People with Psychiatric Disabilities?

CHAPTER 2

Stigma and Mental Illness

28

CHAPTER 3

What Is Psychiatric Rehabilitation?

48

CHAPTER 4

Psychiatric Disability and Equity

70

3

PA R T I I

REHABILITATION STRATEGIES CHAPTER 5

Assessment

CHAPTER 6

Erasing Stigma and Promoting Empowerment

117

CHAPTER 7

Wellness Self-Management and Recovery

135

CHAPTER 8

Care Coordination

153

CHAPTER 9

Medications

164

C H A P T E R 10

Housing and Citizenship

176

C H A P T E R 11

Employment and Education

192

C H A P T E R 12

Family

211

C H A P T E R 13

Psychosis and Cognitive Challenges

231

C H A P T E R 14

Criminal Justice

254

85

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Contents

xii C H A P T E R 15

Physical Health and Wellness

270

C H A P T E R 16

Co-­Occurring Mental Illness and Substance Use Disorder

287

C H A P T E R 17

Peer Supports and Services

300

REFERENCES



315

INDEX



395

PA R T I

UNDERSTANDING PSYCHIATRIC DISABILITIES IN THE PERSON AND THE WORLD

CHAPTER 1

Who Are People with Psychiatric Disabilities?

P

eople with psychiatric disabilities are as complex and diverse as the population in general. Hence, the way to start a discussion on psychiatric rehabilitation is by understanding who persons with psychiatric disabilities are. People with psychiatric disabilities are, because of mental illness, unable to attain age- and culture- appropriate goals for extended periods of time. This defi nition contains three parts. First, psychiatric disabilities are based on diagnosable mental illness. This chapter reviews important components of psychiatric diagnosis, focusing on those diagnoses that are most relevant to psychiatric rehabilitation. Second, a person with a psychiatric disability is not able to pursue significant life goals because of the mental illness. Goals make sense in context, in terms of the community and culture in which the person lives. “Appropriateness” of goals may vary by age (e.g., schooling for young people, employment for adults) and culture (e.g., Asian cultures may view family involvement differently than European cultures do). Examples of important life goals relate to income, work, and vocation; relationships, intimacy, commitment, and family; physical, dental, and mental health; and recreation and spirituality. Rehabilitation providers need to be vigilant about sensitivity to context. What might seem like an odd goal in one context might make sense in another. Ultimately, people decide for themselves which goals they wish to pursue. Third, both the mental illness and its interference with the attainment of goals persist for significant periods of time, in most cases for years. Some people experience illnesses that might be considered serious but quickly adapt and move on. Because of illness or context, disabilities have a major impact on people for significant portions of their lives. Four conceptual domains are important for understanding the nature of psychiatric disabilities. 1. Diagnoses represent the collections of symptoms and dysfunctions that cohere to form meaningful psychiatric syndromes. Typically, diagnoses that are the foci of psychiatric rehabilitation include schizophrenia, the mood disorders (e.g., major depression and bipolar disorder), some anxiety disorders and related disorders (e.g., posttraumatic stress disorder [PTSD] and obsessive– compulsive disorder [OCD], which were formerly classified with the anxiety disorders but now have their own categories in the fifth, text 3

4

I.  Understanding Psychiatric Disabilities

revised edition of Diagnostic and Statistical Manual of Mental Disorders [DSM-5-TR]; American Psychiatric Association [APA], 2022), and some personality disorders. 2.  Course. Psychiatric syndromes are not static phenomena. They vary among individuals in terms of onset and trajectory. A syndrome also varies within an individual over time in terms of the severity of symptoms and dysfunctions. 3.  Co-­occurring disorders. Psychiatric disorders rarely occur in isolation, without associated disorders. Instead, many people with psychiatric disabilities experience multiple diagnoses, which interact to impede their life goals significantly. Substance use disorders, in particular, frequently co-occur with serious mental illness to worsen disease course. 4.  Disabilities, as indicated earlier, refer to the inability of people to meet life goals that are appropriate for their age and culture. These tend to be macro-level goals that include obtaining a satisfactory job, living independently, developing intimate and mature relationships, managing physical and mental health needs, and enjoying life through recreational and spiritual pursuits. Note that it is disability per se that defines a person as being in need of psychiatric rehabilitation. People can have psychiatric diagnoses—some that are severe, and others that are long-­lasting—that do not interfere with their life goals. What distinguishes rehabilitation

PERSONAL EXAMPLE Four Life Stories Veronica Howard had lived on the streets since she was 18. She had neither a steady job nor a regular income. She preferred the cold pedestrian tunnels under the freeway to the homeless shelters, because she was deathly afraid of other people. Veronica wore dirty clothes and had poor hygiene. She also had difficulty managing her diabetes because of lack of access to healthy food. Joel Jenkins was 22 years old when he was brought into the emergency room of the state psychiatric hospital by the police. He was extremely agitated, shouting at imaginary demons, and thrashing at the officers. This was his third admission to the hospital in the past 6 months. His parents were frightened of Joel’s recurring “craziness” and feared they would soon have to “put him away” in an institution. The police officers in the small town where Joel lived were afraid that the next time they were called to his home, the arrest could escalate into someone getting hurt. They were also concerned that Joel might be using marijuana, because some was found in his pants pocket during his last arrest. George Miller rarely comes out of his apartment. It’s not that he is afraid of people; rather, he just seems to have no interest in them. He does not particularly care about working with others, making small talk when he meets neighbors at the park, or joining friends and family for a holiday meal. For that matter, he has no interest in finding a girlfriend or intimate partner. Harriet Osborne wants to get a job, live on her own, find a husband, and have a family. But she has been hospitalized six times for mental illness and is afraid she will not be able to handle these goals. So, instead, she goes to a recreational program each day, where she is bored with doing the same routine of crafts and board games.

1.  People with Psychiatric Disabilities 5 

from other forms of psychiatric care is the focus on helping people achieve life goals that are blocked by symptoms and dysfunctions. Each of these four conceptual domains is reviewed more fully in the remainder of this chapter. There can be significant problems in discussions that focus on diagnoses, symptoms, dysfunctions, and disabilities: Such discussions can reduce people to the sum of their problems. Although a pathology-based perspective is useful for understanding mental disorder and its impact on a person, pathology ignores the individual’s strengths, and this omission has unintended consequences (Stein et al., 2022). Focusing on limitations adds to the person’s feeling of incompetence and stigmatization. Moreover, ignoring strengths misses resources that the person and rehabilitation team may use to advance the person’s goals. Given the importance of a strengths-based perspective, the chapter ends with a fuller discussion of this area.

PSYCHIATRIC DIAGNOSIS Many countries use the International Classification of Diseases and Related Health Problems (now in its 11th revision and known as ICD-11; World Health Organization [WHO], 2019) as a resource for psychiatric diagnosis. Although ICD-11 is a reference for all disease, the section on mental disorders is specific to psychiatric diagnosis. Psychiatric rehabilitation practitioners in the United States and some other countries rely on the DSM, which is currently in a text revision of its fifth edition (DSM-5-TR), an update of DSM-5, published in 2013 (APA, 2013). Although there are some minor differences across manuals, researchers have attempted to make sure that DSM and ICD correspond as the references continue to develop. DSM-5-TR specifies criteria for making diagnoses; for example, two or more of the following need to be exhibited during a 1-month period for a person to be diagnosed with schizophrenia: delusions, hallucinations, disorganized speech, grossly disorganized or catatonic behavior, or negative symptoms. Other criteria (regarding the duration of the symptoms, the resulting level of functioning, etc.) must also be met. Although DSM includes diagnoses relevant to all age groups, disorders of interest to psychiatric rehabilitation are generally dominated by adult syndromes. In part, this is the case because the onset of many major mental illnesses (e.g., schizophrenia and the mood disorders) occurs in late adolescence or young adulthood. The focus on adult disorders also occurs because disabilities (defined as blocked life goals) are most meaningful in adulthood, when various goals such as work, relationships, and independent living are ordinarily achieved. Hence, psychiatric disorders related to children (e.g., attention-­ deficit/hyperactivity disorder or developmental disabilities) and those with onset in later life (e.g., major or mild neurocognitive disorder due to Alzheimer’s disease) are typically not the focus of psychiatric rehabilitation. WHO (2001) developed the International Classification of Functioning, Disability, and Health (ICF) to parallel the goals of the contemporaneous ICD, and DSM. ICF integrates medical and social aspects of a disorder into a single classification. It echoes the earlier statement that problems can only be understood in terms of context. Hence, ICF describes disability and functioning in terms of health conditions (diseases, disorders, and injuries) and contextual factors. It further divides context into environmental factors (e.g., social attitudes, architectural characteristics, legal structures, climate, and terrain) and internal personal factors (e.g., gender, age, coping styles, social background,

6

I.  Understanding Psychiatric Disabilities

education, and profession). These descriptors are then used to classify people into more than 50 core sets. For the most part, ICF has not been used in rehabilitation practice in the United States. However, it is an important set of guidelines that reminds the provider of the importance of context in describing disabilities.

CHARACTERISTIC DIAGNOSES Diagnoses in DSM represent syndromes, or collections of symptoms that have meaning for an understanding of etiology (causes of a disorder) and treatment. In addition, specific disorders tend to be associated with dysfunctions (e.g., poor social skills) that, when combined with symptoms, prevent persons from achieving life goals. Finally, diagnosis is fundamental for answering epidemiological questions—namely, questions about the distribution of mental disorders in the population and associated risk factors. DSM refers to the various diagnoses as disorders. A psychiatric disorder is a clinically significant behavioral or psychological syndrome that is associated with distress or dysfunction, or with increased risk of death, disability, pain, or loss of freedom (APA, 2022). Describing a condition as clinically significant generally means that the condition is severe enough that treatment would be recommended or sought out.

Symptoms and Dysfunctions Although DSM is largely silent about the difference between symptoms and dysfunctions, symptoms tend to be the additional negative experiences that occur because of an illness, while dysfunctions represent the absence of normal functioning. Both of these are evident in four fundamental spheres of human psychology: affect; perception and cognition; motivation and behavior; and interpersonal functioning. Note that reviewing symptoms and dysfunctions in terms of these four spheres implies that symptoms are not necessarily linked to specific disorders. For example, hallucinations and depression occur in several different disorders. Although psychopathology researchers formerly looked for the single symptom that unequivocally signaled a specific disorder, these efforts have been largely unsuccessful. It is the collection of symptoms, with corresponding course and disabilities, that defines a diagnosis.

Affect Four types of mood-­related symptoms may constitute a psychiatric disorder: depression, euphoria, anxiety, and anger. These are distinguished from the normal range of positive and negative emotions by their severity or the length of time for which they have been experienced. For example, feeling anxious before a test is common and perhaps adaptive, because it motivates a person to be prepared. Feeling anxious about a test all semester is likely to be overwhelming and to interfere with activities outside of school. Depression is a feeling of sadness, or being blue; commonly associated with depression is anhedonia (a lack of enjoyment in life activities, especially those that were previously enjoyable). On the opposite end of the continuum from depression is euphoria, an overwhelming feeling of intense pleasure and well-being that can lead to uncontrollable excitement and regrettable behavior. Anxiety has both cognitive and physical components. Worrying or ruminating over a stressor is the cognitive component. The physiological or autonomic components of anxiety include rapid heartbeat, shortness of breath,

1.  People with Psychiatric Disabilities 7 

profuse sweating, and/or muscle ache (especially in the head and neck). Finally, some people have significant anger problems, marked by sudden and uncontrollable rage that can escalate into violence. Alternatively, affective symptoms may appear in terms of disordered modulation. Inappropriate affect refers to emotions that are not consistent with the situation (e.g., uncontrollable laughter when learning of the death of a friend, or sobbing while watching a comedy). Affective lability means rapid change from one emotion to the next. An emotionally labile person may swing from crying to anger to laughter during the course of a 3-minute conversation. Dysfunctions in affect are also evident in some psychiatric disorders. Most common among these is flat affect, or responding to normally emotional situations with almost no signs of emotion. For example, a person with flat affect may seem to show no grief at the death of a loved one and no joy at winning the lottery.

Perception and Cognition Distortions in perception that lead to significant disability are observed in several psychotic disorders, or mood disorders with psychotic features. These distortions include four types of hallucinations: auditory (which are the most commonly experienced in schizophrenia and are often reported as voices), olfactory (which are more commonly associated with major depressive disorder and include reports of putrid odors of decay), tactile, and visual. Psychosis is also associated with two cognitive symptoms: delusions, which are erroneous beliefs that might include grandiose, religious, persecutory, referential, or somatic content; and disorganized speech, in which syntax and semantics that govern the meaning of discourse are absent, and content may approach nonsense. Depression is associated with world views and self-views of helplessness, hopelessness, and worthlessness. Anxiety is often associated with another kind of cognitive symptom: obsessive thoughts. Obsessions are persistent ideas, impulses, or images that are experienced as intrusive and cause marked distress. Two dysfunctions may be observed in the perceptual and cognitive sphere. First, people with some psychiatric disorders may show deficits in attention and other information-­ processing abilities. This may include problems with maintenance, span, and selectivity of attention. People with manic episodes may have diminished attention because of distractibility (i.e., attention easily drawn to irrelevant stimuli). Additional deficits have been found in such cognitive functions as short- and long-term memory, and the executive functions that help people organize individual processes into an efficient decision-­ making system (Habtewold et al., 2020; Kriesche, Woll, Tschentscher, Engel, & Karch, 2022). In addition, some people show problems with impoverished thought: They are unable to generate many ideas spontaneously in response to an issue. Alogia is common for a person with impoverished thought: speech marked by minimal words and little initiation of conversation.

Motivation and Behavior Symptoms and deficits related to motivation manifest themselves in different ways. First, people with mood disorders typically show motivational problems. For instance, those with overwhelming euphoria may experience an expansive approach to life; namely, they feel that there are no limits to what they might accomplish. Conversely, those who are depressed may be lethargic and have difficulty completing everyday activities, such as basic hygiene and work duties. Some people may experience inhibitions because of their

8

I.  Understanding Psychiatric Disabilities

disorders. Those with significant anxiety disorders or related disorders are unable to accomplish daily activities because they avoid situations that make them anxious, or because they are overwhelmed with worry. Disinhibition is common in some other important disorders; these include some sexual and eating disorders. Disinhibition-­related syndromes of particular concern to psychiatric rehabilitation are the various substance use disorders (e.g., inability to inhibit inappropriate impulses because of intoxication). Symptoms related to behavior are also listed under motivation. These include the disorganized or catatonic behavior found in some psychotic disorders. Catatonic behavior includes opposite ends of the same spectrum—­motoric immobility or excessive motoric activity. Grossly disorganized behavior, seen in some forms of schizophrenia, includes childlike silliness or unpredictable agitation. Behavior-­related symptoms also include manic or hypomanic activities, which are found in the corresponding phases of bipolar disorders. These symptoms include pressure to keep talking, marked increase in goal-­ directed activity, and/or excessive involvement in pleasurable activity. Depression is also associated with behavior change: psychomotor agitation, in which the individual paces or cannot sit still; and the opposite, psychomotor retardation, in which the individual moves, thinks, and talks more slowly than usual. Perhaps the major dysfunction most related to motivation is avolition, which is characterized by an inability to initiate and persist in goal-­directed activities. People manifesting this symptom rarely show interest in work or social activities.

Interpersonal Functioning Social relationships are at the heart of psychological functioning and are fundamental to most life goals. Many psychiatric disorders have a significant impact on the ability to form or maintain these relationships. Interestingly, most of the symptoms and dysfunctions in interpersonal relationships represent interactions with the three previous spheres of functioning: affect, cognition, and motivation. In terms of affect, social anxiety can cripple a person’s abilities to engage in and enjoy interpersonal transactions. Depression can rob a person’s interest in others or make others unrewarding to be around. Euphoria can change interactions into overly energetic and unpredictable affairs. Anger and rage can fill others with dread or leave them feeling victimized. Hallucinations and delusions can make it difficult for people to form close and intimate bonds because their perspectives on the world, including a shared reality, fail to correspond with the perspectives of others. Symptoms and dysfunctions in cognition also undermine a person’s interpersonal experiences (Horan & Green, 2019). They may prevent the person from correctly perceiving the social cues of a situation, or from understanding the roles and goals that govern it. Problems with motivation may also have an impact on interpersonal activities. The loss of motivation common to some disorders leaves some individuals with a total lack of interest in social interactions. People with this deficit, called schizoid symptomatology, do not necessarily fear others or have their interpersonal drive suppressed by depression. Rather, they seem to have no natural desire for any aspect of the multilevel benefits of human interaction. Significant work has focused on understanding the deficits and dysfunctions related to social functioning and social skills (Gardner, Filia, Killackey, & Cotton, 2019; Smart, Brown, Palmier-Claus, Raphael, & Berry, 2020). Social functioning deficits can prevent people from attaining age-­appropriate social roles. For young to middle-age North American adults, these roles may include employee, head of household, spouse/partner, parent, neighbor, and member of a religious community. People with some psychiatric disorders lack the social skills that would enable them to achieve social roles. These include

1.  People with Psychiatric Disabilities 9 

interpersonal skills such as basic conversation, assertiveness, conflict management, and dating skills. They also include personal and instrumental skills, such as hygiene, money management, and basic work skills.

Suicidal Thoughts and Behaviors Many people with psychosis or other serious mental illnesses struggle with suicidal thoughts and behaviors; hence, this is an important concern for rehabilitation providers, who should be aware of and ready to intervene in all such cases. Recent epidemiological research has shown that each year in the United States, more than 45,000 reported deaths are attributed to suicide (Centers for Disease Control and Prevention, 2020). Prevalence of suicidal ideation is particularly high in adults with major depression and substance use disorders. Suicidal ideation or attempt is one of the criteria for the diagnosis of major depression, though not all people who qualify for this diagnosis are suicidal. Two points on suicide assessment are important to emphasize: 1. Past suicidal ideation or attempts serve as important information for determining whether a person is at increased risk of suicide and for developing an appropriate intervention plan. 2. Risk of suicide does not necessarily mean that a person should be hospitalized or rule the person out from pursuing other rehabilitation goals. Answers to difficult issues like these need to involve the person with disability, his or her family, and the complete rehabilitation team.

Dangerousness Some people with serious mental illness also pose a danger to others. This danger can vary from homicide (which is very rare) to yelling at loved ones. Epidemiological research suggests that, depending on diagnosis, people with serious mental illness are up to six times more likely to be violent than the rest of the population; however, only 1–5% of violent acts are attributable to people with mental illness (Ahonen, Loeber, & Brent, 2019), and people with mental illness are more likely to be victims of crimes than perpetrators (Sariaslan, Arseneault, Larsson, Lichtenstein, & Fazel, 2020). Individuals who are experiencing psychosis and concomitant use of alcohol and other drugs are at the highest risk of perpetrating violence. Moreover, symptoms related to paranoia and threat/control override also exacerbate violence (Song, Corcoran, & Gillespie, 2022). Interview items that assess threat/control override include the following: 1. How often have you felt that your mind was dominated by forces beyond your control? 2. How often have you felt that thoughts were put into your head that were not your own? 3. How often have you felt that there were people who wished to do you harm? The two cautions about suicide also apply to an understanding of violence. First, any previous history of violence and threats should be considered in developing an appropriate intervention plan. Second, the presence of anger or threat does not necessarily preclude pursuit of other rehabilitation goals. Rather, the person and his or her family and rehabilitation team need to make this issue a priority in pursuing life goals.

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I.  Understanding Psychiatric Disabilities

Insight into Symptoms One might think that psychiatric symptoms and related dysfunctions would dominate a person’s awareness. It might be assumed that people with mental illness would be concerned about problems with emotion, perception, cognition, motivation, interpersonal relations, or danger, and therefore would be highly motivated to participate in treatment to resolve these problems. However, many people with psychiatric diagnoses are unaware that specific experiences are symptomatic of mental illness (Lysaker, Pattison, Leonhardt, Phelps, & Vohs, 2018). Lack of insight may occur for three reasons. First, it may be the direct result of the biological deficits caused by the illness. For example, deficits in the frontal lobes of the cerebral cortex commonly found in some people with schizophrenia are associated with diminished insight. This area of the cortex is associated with metacognitive processes related to the observing self—that is, the cognitive process that helps the person check how well they are (Lysaker et al., 2018). Second, alternatively, not recognizing symptoms as mental illness may have secondary gain. Namely, labeling oneself as “mentally ill” may evoke both public and internal stigma. If the person does not admit that certain experiences are symptoms of mental illness, thereby denying the psychiatric disorder, the person can escape the stigma (Holder, Peterson, Stephens, & Crandall, 2019). Third, what mental health professionals perceive as symptoms may be experienced as consistent with a person’s image of themself. For example, frequent rage and angry interactions with others may be perceived as “normal life” by some people. This misperception of symptoms may be influenced by cultural factors (Vovou, Hull, & Petrides, 2021). What implications does lack of insight have for treatment? Poor insight into one’s disease predicts poor outcome; that is, people are less able to use interventions to control their symptoms and meet their life goals (Rozalski & McKeegan, 2019). In addition, lack of insight undermines full understanding and participating in treatment plans (Coffey et al., 2019). The traditional notion of psychiatric care was that people had to recognize and admit their mental illness for significant treatment benefits to occur. In its absence, some people might resist participating in effective interventions. Most rehabilitation providers now realize that focusing on disease acceptance can lead to an unnecessary struggle. For example, the perception that people who did not admit their schizophrenia would not progress until they did so, and that a provider “should” motivate such a person into recognizing their illness, is considered dated (Corrigan, Liberman, & Engel, 1990). Today’s rehabilitation providers avoid this battle, instead partnering with these persons by helping them to identify life goals and develop rehabilitation plans to achieve these goals. People can go back to work whether or not they admit they have schizophrenia.

Epidemiology Epidemiologists seek to address public health questions about how many people meet criteria for specific disorders (Baxter, Patton, Scott, Degenhardt, & Whiteford, 2013). Incidence rates represent new cases that emerge in a healthy population within a fixed time frame (often 1 year). Prevalence rates represent the proportion of the population meeting criteria for a disease at a specified point or period of time. Working at the population level allows researchers to understand the biological, behavioral, psychological, social, and economic variables that predict risk and course of various disorders. Public health officials use this information to set priorities in treatment policy and to track the impact of specific approaches on the diagnosis in the population.

1.  People with Psychiatric Disabilities 11 

Etiology One purpose of diagnosis in medicine is to classify people with similar disorders into groups that share similar etiologies or causes. For example, people with respiratory symptoms and with test results suggesting a bacterial infection may be diagnosed with pneumonia, which may be effectively treated by antibiotics. Psychiatry has been less successful in developing a diagnostic system that corresponds with etiology. Being diagnosed with major depressive disorder, for example, does not automatically suggest a specific set of causes. Despite this limitation, psychiatry has made huge strides in identifying what causes and exacerbates the serious mental illnesses that lead to psychiatric disabilities.

Biological Factors Clearly, research has not substantiated the out-of-date notions that mothers, fathers, or other family members cause mental illnesses because of bad parenting. Instead, research has identified biological processes that may explain the development of these disorders. A complete discussion of these processes is beyond the scope of this text. In brief, research has suggested two sets of factors that may yield a diagnosis consistent with disorders such as schizophrenia: 1.  Genetic factors. Population approaches to genetics, as well as the newer field of molecular genetics, have clearly implicated genetic inheritance as a primary cause of schizophrenia and the mood disorders. Research at this point seems to support a complex multifactorial pattern of inheritance rather than a single gene (Sullivan & Geschwind, 2019). 2.  Obstetric complications. Adverse intrauterine events are associated with later onset of schizophrenia (Al-­Haddad et al., 2019). For example, mothers who contract influenza during the second trimester of pregnancy are significantly more likely to give birth to children who later show signs of schizophrenia than are comparison groups of mothers. Other prenatal infection exposures increase the risk of developing depression.

The Stress–­Vulnerability Model Biological factors are not sufficient to explain the onset and course of most serious mental illnesses, however. Researchers developed a stress–­vulnerability model (see Figure 1.1) that integrates biological vulnerabilities with environmental stressors to explain how serious mental illnesses such as schizophrenia occur (Zubin & Spring, 1977). According to this model, genetic and other biological factors may make some people vulnerable to stress. When this vulnerability is overwhelmed, typically in late adolescence or young adulthood, the person experiences prodromal symptoms (the subtle, usually nonpsychotic signs of an illness that precede the first episode). Continued stress yields a fullblown psychotic episode and onset of the disorder. With treatment, the psychosis may remit; however, subsequent stress may cause relapse or residual symptoms. Research on this model has shown that common events that occur as part of “normal” life development can cause sufficient stress to overwhelm a vulnerable person (Taylor, Grove, Ellingrod, & Tso, 2019). Such events may include leaving home when launching from one’s family of origin, starting a job, or getting married. Adverse childhood experiences (ACEs) such as abuse, neglect, or parental divorce seem to increase vulnerability to mental illness in adulthood, with exposure to multiple and prolonged

I.  Understanding Psychiatric Disabilities

12

FIGURE 1.1.  The stress–­vulnerability model. Originally developed to explain the course of schizophrenia, its broad principles are applicable to the other disorders that lead to psychiatric disabilities.

ACEs increasing this risk (Hughes et al., 2017). Moreover, some stressful family interactions can overwhelm a person’s vulnerability (Pruessner, Iyer, Faridi, Joober, & Malla, 2011). Protective factors that can diminish the person’s vulnerability to stress may prevent subsequent relapses. Broadly speaking, these factors include psychiatric medication, interpersonal and instrumental skills, and social support. In some ways, these protective factors are the basic foundation on which rehabilitation is provided.

COMMON DIAGNOSES AMONG PSYCHIATRIC DISABILITIES Four general diagnostic syndromes are commonly associated with psychiatric disability: schizophrenia, mood disorders, anxiety and related disorders, and personality disorders such as borderline personality disorder. (Note that we continue to use the still-­common term mood disorders throughout this text for the depressive disorders and bipolar disorders, although DSM-5-TR has now divided these two groups into separate categories. We also continue to consider PTSD and OCD together with the anxiety disorders, although, as noted earlier, these two disorders now have their own categories in DSM-5-TR.) We do not mean to imply that these are the only diagnoses relevant to psychiatric rehabilitation. Many DSM diagnoses may be considered the cause of psychiatric disabilities and be relevant for psychiatric rehabilitation. Still, these four groups of disorders account for the vast majority of people with psychiatric disabilities, and therefore are most common in rehabilitation practice.

Schizophrenia Schizophrenia is one of the psychotic disorders that lead to psychiatric disabilities. DSM5-TR defines psychosis at various levels. The narrowest definition is restricted to evidence of delusions or prominent hallucinations, with the person not having insight into the

1.  People with Psychiatric Disabilities 13 

pathological nature of hallucinations. A broader definition includes other positive symptoms such as disorganized speech or grossly disorganized behavior (positive symptoms are the florid signs of psychosis). Many people with schizophrenia are challenged by significant disabilities and struggle to achieve life goals in most domains. In fact, inherent to the definition of schizophrenia are psychotic symptoms that interfere with major life functions. Schizophrenia is more accurately considered a spectrum disorder—namely, a variety of disorders that may vary in course and outcome but share similar symptoms and dysfunctions. Epidemiological research has shown less than 1% lifetime prevalence for psychotic disorders (Moreno-Küstner, Martin, & Pastor, 2018). Other diagnoses on the schizophrenia spectrum include schizoaffective and schizophreniform disorders. Schizoaffective disorder combines a period of schizophrenia with either a major depressive or a manic episode. The differential diagnosis between schizoaffective disorder and schizophrenia may have important medication implications. Namely, individuals with schizoaffective disorder may benefit from mood stabilizers, as well as antipsychotic medication, to address the affective components of their illness. People with schizophreniform disorder meet the diagnostic criteria for schizophrenia except for length of the disorder. Schizophreniform disorder is shorter in duration than schizophrenia, with the course lasting between 1 and 6 months. People with schizophreniform disorder typically have a much more benign course than those with schizophrenia. In addition to spectrum diagnoses and subtypes, schizophrenia has been defined in terms of positive and negative symptoms (Carrà et al., 2019). Positive symptoms represent the florid signs of psychosis and include hallucinations, delusions, grossly disorganized behavior, and inappropriate affect. Negative symptoms are sometimes called the deficit syndrome and represent the absence of normal functioning seen in many people with schizophrenia (i.e., alogia, avolition, and affective flattening). Typically, positive symptoms are episodic and fluctuate more over time than do negative symptoms. Although, originally, positive and negative symptoms were thought to be mutually exclusive syndromes representing different etiological processes (Crow, 1982), research now indicates that people with schizophrenia can manifest both clusters of symptoms (Carrà et al., 2019). Of more relevance to rehabilitation practitioners, research has suggested that assessment of positive and negative symptoms has been useful for prognosis and treatment planning. Research suggests that positive symptoms, as opposed to negative symptoms, respond well to traditional antipsychotics, as well as to many of the atypical antipsychotic medications (Galderisi et al., 2021); see Chapter 9 for a more complete discussion of medications. Noticing this trend, researchers have sought to improve the impact of some antipsychotics on negative symptoms. Research also suggests that the prognosis for negative symptoms is worse than that for positive symptoms, especially in the psychosocial treatments that often constitute psychiatric rehabilitation (Galderisi et al., 2021). Nevertheless, there is no indication that the presence or severity of positive and/or negative symptoms precludes someone from participating in and benefiting from rehabilitation programs.

Mood Disorders Symptoms related to mood define major depression: People have long periods of time with prominent sadness and/or have significant anhedonia (i.e., loss of enjoyment of almost all human activities and interactions, including those that were previously reported as pleasurable). In addition, people with major depression may experience cognitive, motivational, and interpersonal symptoms and dysfunctions. Many people with major

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I.  Understanding Psychiatric Disabilities

depression also experience vegetative signs. These are changes in major life functions (e.g., sleep, appetite, and energy). Interestingly, these changes can represent either an increase or a decrease from a person’s typical baseline. Thus, many people with major depression report either sleeping significantly more or not being able to sleep as much; either eating more than usual (leading to noticeable weight gain) or decreased appetite; and either having little energy or experiencing high levels of agitation. Mood disorders are among the most common of psychiatric disorders (Substance Abuse and Mental Health Services Administration [SAMHSA/NSDUH], 2021). Approximately 8% of the adult population will meet criteria for major depressive episode each year (SAMHSA, 2021). Some of these people, however, will not suffer long-term disabilities because of their illness. People with bipolar disorders are more likely to experience significant disabilities. Typically, people with bipolar disorders experience separate periods of major depression and of mania, interspersed with periods of normal mood. Manic and depressed episodes can last weeks or even months. Periods longer than several months are atypical, especially in terms of mania, and might represent the more benign cyclothymic disorder. Episodes as short as a few days followed by an episode of opposite polarity are not uncommon. DSM-5-TR distinguishes bipolar disorders into two major types: bipolar I and bipolar II. Both disorders are marked by interspersed periods of major depression and some version of mania or hypomania. People with bipolar I, the more severe of the two types, experience full-blown manic episodes, typically with psychosis. People with bipolar II experience hypomanic episodes, which include many of the “sped-up” symptoms and dysfunctions of mania but in less severe forms (i.e., there are no psychotic symptoms, little need for hospitalization, and less impairment of functioning). Although people with either form of bipolar disorder may experience psychiatric disabilities, those with bipolar I disorder are more likely to need the assistance of rehabilitation programs.

Anxiety and Related Disorders Anxiety disorders and related disorders (PTSD and OCD, which, as noted earlier, now have their own categories in DSM-5-TR) are frequently viewed by the public as less disabling than the schizophrenia spectrum disorders and the mood disorders. Epidemiological research tends to support this notion for the population (Weye et al., 2021). However, individuals with these disorders may still struggle with significant life disabilities for prolonged periods of time. In addition, anxiety and related disorders frequently co-occur with one of the schizophrenia spectrum disorders or mood disorders, and such a combination is likely to yield significant life disabilities (Weye et al., 2021). Although any of the anxiety or related disorders alone can lead to disabilities requiring psychiatric rehabilitation, three in particular may present themselves in rehabilitation clients. The essential features of OCD are recurrent obsessions (persistent thoughts that are experienced as intrusive) or compulsions (repetitive behaviors that a person feels driven to perform), which are sufficiently severe to be time-­consuming or cause significant impairment. Common examples of obsessions include thoughts about contamination or cleanliness, repeated doubts, need for order, aggressive impulses, and sexual images. Common compulsions include washing, counting, checking, requesting assurance, or repeating actions. Typically, people with OCD recognize that their obsessions or compulsions are unreasonable or excessive. The time spent on obsessions or compulsions, as well as the distress they cause, can significantly interfere with persons’ pursuit of their life goals. Agoraphobia involves anxiety about being in places or situations from which escape

1.  People with Psychiatric Disabilities 15 

is difficult or embarrassing. For many people, this manifests as an unwillingness to leave home, so as not to risk these kinds of situations. Avoidance of situations frequently impairs a person’s ability to travel outside the home, thereby undermining work and other independent living goals. PTSD occurs following exposure to an extreme traumatic stressor that involves actual or threatened death, serious injury, or sexual violence to self or others, and that leads to intense fear, helplessness, or horror. The subsequent experience of symptoms may happen immediately after the traumatic event or may be delayed months or years. The symptoms that correspond with PTSD include some form of reliving the event, accompanied by intense emotional arousal. Research suggests that many persons with a diagnosis of schizophrenia or a mood disorder have a history of trauma or full-blown PTSD, which worsens their disabilities considerably (Grattan et al., 2019; Lippard & Nemeroff, 2020). Alternatively, significant trauma or PTSD can interfere with life goals in its own right, leading to the need of rehabilitation practices.

Personality Disorders As outlined in DSM-5-TR, personality disorders are ways in which people relate to and think about their environment and themselves. Symptoms and dysfunctions of the personality disorders are frequently inflexible or otherwise maladaptive manifestations of typical personality traits. Personality disorders are organized into three clusters. Cluster A includes paranoid, schizoid, and schizotypal personality disorders; individuals meeting criteria for these diagnoses often appear eccentric or odd. Cluster B comprises antisocial, borderline, histrionic, and narcissistic personality disorders; people with these diagnoses may seem dramatic or emotional. Cluster C includes avoidant, dependent, and obsessive–­compulsive personality disorders, in which individuals appear anxious or fearful. Although any of these 10 disorders can lead to significant disabilities and the need for rehabilitation, much has been written in particular about psychosocial services for people with borderline personality disorder (BPD; Stoffers-­Winterling et al., 2022). BPD is marked by a pervasive pattern of instability in social relationships, selfimage, and emotions, exacerbated by severe impulsivity. Impulsive behaviors can include self-harm or suicide. Because their relationships are so tumultuous, people with this disorder frequently lack a support network of individuals who can help them cope with even the most minor problems. As a result, minor depression and anxiety can explode into overwhelming stress. People with BPD may have significant difficulty in accomplishing employment, relationship, and other independent life goals because of these symptoms, and thus in benefiting from rehabilitation.

Additional Information for an Accurate Psychiatric Diagnosis Presence or absence of diagnostic criteria as assessed during a single interview is usually not sufficient to enable a provider to make a diagnosis. It is almost impossible to decide whether a person presenting with depression and psychotic symptoms at a single clinic visit has major depressive disorder, schizophrenia with depression, schizoaffective disorder, a bipolar disorder, a substance-­induced disorder, or some combination thereof. Complete diagnosis requires two additional elements in addition to assessment of symptoms and dysfunction. 1.  History. What kind of impact have the symptoms and dysfunctions had on the person over time? The next section of this chapter examines this question in terms of the course of the disorder.

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I.  Understanding Psychiatric Disabilities

2.  Depth of impact. How much does the illness interfere with the person’s life? Does it lead to an occasional acute crisis, followed by significant periods where symptoms are in remission and life goals are accomplished? Or does the illness significantly disrupt the person’s functioning and their life plans? This chapter ends with a consideration of the various kinds of disabilities that may be associated with psychiatric disorders.

COURSE OF THE PSYCHIATRIC DISORDER The symptoms, dysfunctions, and disabilities that constitute psychiatric disorders are dynamic phenomena; that is, they change throughout a person’s life. Key milestones help to explain disease course, including onset of the disorder and the prodromal period leading up to it; ongoing disease trajectory once the illness has begun; and end state. As outlined in Figure 1.2 for schizophrenia, each milestone may be described as one of two types. The onset may occur over a slow and chronic course, or it may be sudden or acute. The trajectory may be simple and unchanging, or it may represent undulating waves that vacillate between significant symptoms and remission. The end state may be severe and unremitting, or recovery may occur. Each of these milestones is reviewed more fully in this section.

Disease Onset Onset for most of the mental illnesses that lead to psychiatric disabilities and rehabilitation often occurs in late adolescence or early adulthood. The period preceding the onset of the full-blown disease is known as the prodrome. As outlined in Figure 1.2, the prodromal course may be brief and acute or it may be chronic and insidious. Onset of the disease is more of a shock to the people with acute onsets and their families. Typically, the person was experiencing few psychiatric problems prior to the full-blown set of symptoms characteristic of the illness.

FIGURE 1.2. The different elements of course and their presentations, based on Ciompi’s (1980) model of schizophrenia. As in most serious mental illnesses relevant to psychiatric rehabilitation, the course here is described as starting in late adolescence or young adulthood.

1.  People with Psychiatric Disabilities 17 

For those with an insidious and chronic onset, the prodrome can be a brief period of months or can extend over several years. Because it is slow and insidious, the person and their family often do not identify the prodrome as signaling psychiatric illness. In this case, the prodrome is marked by subtle forms of the symptoms that characterize the illness. For example, people who end up with schizophrenia may show signs such as ideas of reference (rather than delusions), odd beliefs or magical thinking, and unusual perceptual experiences (e.g., body illusions). Presence of symptoms like these during adolescence or young adulthood does not necessarily mean that the person’s disorder will develop into a full-blown psychotic disorder. Alternatively, such symptoms may signal onset of the less disabling schizotypal personality disorder. Early and accurate assessment of the onset of serious disorders like schizophrenia is important for the subsequent impact of interventions. Research has shown that the duration of untreated psychosis (the period in which the prodrome is not correctly identified as leading up to psychosis) is positively associated with poor outcome in terms of relapse and inversely associated with remission (Albert & Weibell, 2019). Hence early intervention programs have been developed and evaluated to treat people soon after psychosis first emerges. One possible goal of these kinds of programs is to help people avoid disabilities by learning to manage their illness from the start. For this reason, early intervention programs typically do not fall under the rubric of psychiatric rehabilitation. These issues are discussed more fully in Chapter 7.

Ongoing Trajectory Although some serious mental illnesses are short in duration, most disorders that are relevant to psychiatric rehabilitation last for years. The trajectory of serious mental illness is described by two patterns. Some people experience a relatively simple or flat trajectory, in which symptoms, dysfunctions, and disabilities do not change much from the onset. Alternatively, many people with serious mental illness experience an undulating pattern, in which symptoms, dysfunctions, and disabilities wax and wane. Undulating patterns can be regular and episodic—that is, described by regular shifts from disease states to remission (Modestin, Huber, Satirli, Malti, & Hell, 2003). Research has not clearly determined what might account for these rhythms, but possible factors may include biological patterns (e.g., monthly hormonal changes; Green & Graham, 2022), social schedules (e.g., regular stresses at work), or anniversaries of earlier traumatic events (Bruce & Weaver, 2021). Irregular patterns are more common, however, in which recurring waxing and waning are not predictable. Decreases of symptoms and dysfunctions from the acute and severe level are described by two phases. During the residual phase, symptoms and dysfunctions have markedly decreased from the acute level, but the person still experiences problems that result from attenuated versions of the disorder. Hence, the person has less severe psychiatric problems than in the acute phase of the illness but is still likely to experience disability. In other instances of serious mental illness, a person experiences total remission of symptoms and dysfunctions during benign periods of the course; in other words, the person returns to preprodromal levels. Generally, evidence of remission during the trajectory suggests a better end state than when only residual phases are experienced.

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I.  Understanding Psychiatric Disabilities

End State What becomes of people with serious mental illnesses? Early psychiatric models mostly predicted negative results. Schizophrenia, for example, was thought to result in a progressive downhill course. Kraepelin (1919/1971) called schizophrenia dementia praecox, or a “precocious dementia,” because he believed that the loss of function was irretrievable, as in most dementing illnesses. Several long-term follow-up research projects were completed to test this assertion; most of this research was done on schizophrenia. In these types of studies, people with schizophrenia were typically identified while in a psychiatric hospital and then followed from 10 to 30 years to determine end state. Findings from prominent studies of this kind are summarized in Table 1.1. The table lists the criteria used by each study to determine improvement or recovery. If Kraepelin were correct, we would expect the vast majority of (if not all) people with schizophrenia still to be symptomatic and dysfunctional, and not to be working or living independently at follow-up. Instead, each of the studies found that schizophrenia has a heterogeneous range of end states, from severe cases requiring repeated or continuous hospitalization to cases in which a single illness episode is followed by complete remission of symptoms. The findings reported in these studies as a whole indicate that roughly half of participants recovered or significantly improved over the long term, suggesting that remission or recovery is much more common than originally thought.

Early Intervention Researchers and clinicians realize that the earlier a serious mental illness is addressed in the course of the disorder, the better the outcomes. For example, a person experiencing the onset of schizophrenia who becomes engaged in a psychiatric rehabilitation program within the first year of the disorder is likely to respond better to interventions than will a person who waits longer. Clinicians have described duration of untreated psychosis—the period between first experiencing symptoms and receiving services—as a key metric for early intervention (Callaly, 2014). Early consideration of identification and intervention first emerged for schizophrenia (Petersen, Bhana, Lund, & Herrman, 2014) but has been extended to depression and anxiety disorders (Nazareth & Kendrick, 2014), substance use disorders (Newton, Deady, & Teesson, 2014), and eating disorders (Pinhas, Wong, & Woodside, 2014). Clinicians and researchers have even proposed strategies for the perinatal period (St-Andre, Schwartz, & Yoshida, 2014), as well as for infancy and early childhood (Barlow, 2014). Early intervention has required a paradigm shift in which providers partner with community members or institutions (e.g., schools) to respectfully identify people with these challenges and engage them in interventions (O’Connell et al., 2022). The nature of these interventions is reviewed in Chapter 7 on illness self-­management.

CRITERIA FOR RECOVERY Different dimensions of outcome and end state, such as symptom levels and psychosocial functioning, have generally been found to intercorrelate to only a modest degree (e.g., Chien, Thompson, Leung, & Bressington, 2022). For this reason, the choice of which dimensions to use as criteria for recovery is important. Some scholars advocate the use of multiple dimensions to provide a comprehensive and valid picture (see Van Weeghel,

1.  People with Psychiatric Disabilities 19 

TABLE 1.1.  Summary of Long-Term Follow-Up Studies on Schizophrenia Name of study

Recovered or improved

Average follow-up

Improvement/recovery criteria

Burgholzli Study (Bleuler, 1978)

53%

23 years

5-year “end state” determined through clinical interview by Bleuler.

Iowa 500 Study (Tsuang & Winokur, 1975)

46%

35 years

Marital, residential, occupational, and symptom status rated on 3-point scales and combined into a global measure.

Bonn Hospital (Huber et al., 1980)

56%

22 years

Symptoms and social functioning assessed by exam. Social recovery was defined as fulltime employment.

Lausanne Study (Ciompi, 1980)

49%

37 years

Bleuler’s 5-year “end state” criteria.

Chestnut Lodge (McGlashan, 1984)

36%

15 years

Personal interview in which examiner rated subject on hospitalization, employment, social activity, psychopathology, and a global functioning score that combined these factors.

Japanese Study (Ogawa et al., 1987)

57%

21–27 years

Follow-up interviews emphasizing social relationships and residential status.

Vermont Study (Harding et al., 1987a, 1987b)

68%

32 years

Interviews using structured instruments for the collection of data on social functioning, hospital records, various symptom-based measures summarized with the Global Assessment Scale.

Cologne Study (Steinmeyer et al., 1989)

36%

25 years

Interviews using the Global Assessment Scale, the Disability Assessment Schedule, the Psychological Impairment Rating Schedule, and the Bonn criteria for categorization of psychopathological outcome.

Maine Sample (DeSisto et al., 1995)

49%

36 years

Criteria replicated the Vermont Study. The Global Assessment Scale provided a global measure of psychological and social status.

15 and 25 years

Bleuler global assessment based on all information on course, symptoms, and functioning.

International Study of Schizophrenia (Harrison et al., 2001)

56–60%

Note. Data from Corrigan and Calabrese (2005).

van Zelst, Boertien, & Hasson-­Ohayon, 2019). However, one may also argue that presence of symptoms within an otherwise functional life should not disqualify an individual from being judged as “recovered.” Psychosocial functioning is arguably a more important criterion of recovery than being symptom-free, and an overreliance on symptom-based criteria, together with the false assumption that symptoms and functioning are strongly correlated, may partially explain why the pessimistic Kraepelinian view of schizophrenia

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I.  Understanding Psychiatric Disabilities

has persisted. Reliance on global ratings of outcome collapses these differences, making the exact nature of outcomes unclear. In many cases, persons with schizophrenia have learned ways to cope with and manage symptoms when they arise. In cautioning against the criterion of presence versus absence of symptoms, Liberman, Kopelowicz, Ventura, and Gutkind (2002) have argued that positive symptoms experienced during a given follow-up period may last only days or weeks, and may have a minimal impact on social or occupational functioning. In addition, the International Study of Schizophrenia (Harrison et al., 2001) found that 20% of participants maintained employment despite persisting symptoms and/or disabilities. In any case, we certainly should not limit outcome to positive psychotic symptoms given that negative symptoms, anxiety, and depression may be much more disabling than positive symptoms in a given case (Carrà et al., 2019).

COURSE PREDICTORS AND MODIFIERS Research has identified several factors that either predict or modify the course of serious mental illness, including family history, stress, and substance use, as well as some demographic characteristics (e.g., age of onset, gender) and socioeconomic variables. These are relevant concepts to keep in mind as rehabilitation plans are developed to help people achieve their life goals. However, neither a person with a psychiatric disability nor the person’s rehabilitation team should feel bound by predictions that correspond with individual factors. A person with serious mental illness who is motivated to achieve work, independent living, and other life goals will be able to achieve these goals regardless of course predictors or modifiers with appropriate rehabilitation services. The factors of family history, stress, and substance use are reviewed more fully below.

Family History Having biological relatives with serious mental illness is probably the best predictor of disease onset, because it is a proxy for probability that a person has inherited a genetic vulnerability (Pettersson et al., 2019; Sullivan & Geschwind, 2019). For example, having a first-­degree relative (a parent or sibling) with schizophrenia increases the person’s likelihood of schizophrenia 10-fold (Kendler & Diehl, 1993). Individuals with an identical twin diagnosed with schizophrenia have a 50% chance that they too will contract the disorder (Gottesman & Erlenmeyer-­K imling, 2001). Note, however, that only a 50% risk rate in a genetically identical person implicates nongenetic factors such as stress as important in terms of the onset and trajectory of serious mental illness.

Stress As discussed earlier in this chapter, people with serious mental illnesses are thought to be vulnerable to stress. Psychosocial stressors are frequently implicated in both the onset of a disorder and in causing relapse when a person is in remission (Shields & Slavich, 2017). Psychosocial stressors may take the form of everyday life events—that is, the kind of life demands arising from work, independent living, and intimate relationships. Life events are particularly stressful at times of loss (e.g., being fired from a job or getting a divorce) or change (e.g., moving residences or offices). Stressful relationships can also overwhelm a person’s vulnerability and cause symptom relapse (Blixen et al., 2016).

1.  People with Psychiatric Disabilities 21 

Substance Use People who use alcohol and other drugs are likely to have a more severe course and end state. In fact, the impact of co-­occurring substance use and the prevalence of this problem among people with psychiatric disabilities has become a dominant issue among rehabilitation providers. The problem is described more thoroughly in the next section, and corresponding interventions are addressed in Chapter 16.

DISABILITIES Disabilities are the definitive foci of psychiatric rehabilitation, and are what distinguish it as an approach to services from approaches based more on psychopharmacology or psychotherapy. As noted earlier, disabilities are those psychological phenomena that arise from psychiatric illness to block goals in the key life domains. Perhaps most important about the focus on disability is the way it defines the mission of psychiatric rehabilitation. Other approaches to psychiatric care may target diminishing symptoms or dysfunctions. The goal of psychiatric rehabilitation is to help people overcome their disabilities, so that they are able to achieve their life goals. People may be able to achieve life goals in this manner while still experiencing significant symptoms and dysfunctions.

Age and Culture Defined What are appropriate life goals? Consistent with rehabilitation’s commitment to personal empowerment, persons with psychiatric disabilities are best able to answer this question for themselves. However, most cultures have age-­defined goals that are benchmarks of achievement; these are defined in terms of role attainment in North America. The prototypical young to middle-aged adult in the United States and Canada is assumed to pursue and/or accomplish the following goals:

• Launch from family of origin and set up an independent household. • Complete the necessary education and training to pursue a vocation. • Obtain at least an entry-level position commensurate with vocational goals. • Begin to achieve income goals so that the person can be self-­sustaining. • Find a mate with whom to share an intimate, long-term relationship. • Develop personally meaningful approaches to address recreational and spiritual needs.

Note that these goals are defined as age-­specific. Hence, we would expect younger adults to be first engaging in the pursuit of some of these goals, while older adults might be moving away from the pursuit of others. The goals are also defined in terms of culture: Those listed here largely represent a mainstream North American/Western European ethos. It is up to rehabilitation providers to understand culture-­specific goals within the culture(s) of the people they serve. Suffice it to say here that cultural definitions of life goals are likely to change across national borders, as well as within ethnically diverse countries. In the United States, for example, the goal of launching from the family is likely to differ for Black people, Hispanics, and Asian Americans. Even with these additional guidelines, the rehabilitation provider must remember that ultimate definitions of specific goals depend on people’s experience with their culture, and on their personal desires given these experiences.

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I.  Understanding Psychiatric Disabilities

Disability Domains and Life Goals Absence of symptoms and dysfunctions does not a good life make. Instead, quality of life depends on achieving goals in the major life domains (Isaacs et al., 2022). At a minimum, these goals should include satisfaction of basic needs (e.g., safe, private, and comfortable housing); stimulating and financially beneficial work; comprehensive physical, dental, and mental health care; sufficient financial resources; transportation and access throughout one’s community; and adequate legal counsel. A good quality of life also requires some sense of satisfaction with more transcendent desires: support networks including family, friends, and coworkers (or fellow students, depending on the situation); recreation, both alone and with others; intellectual stimulation; and spiritual life (Davis & Brekke, 2014; Isaacs et al., 2022). I define a good quality of life in the remainder of this section in terms of five domains: independent living, education and employment, relationships, health, and spiritual life and recreation. Goals in these domains are goals that are blocked by disabilities. Note that these five domains are at the heart of the chapters on service approaches.

Independent Living Most adults in Western cultures seek to launch from their families of origin and set up households that reflect their adult tastes and interests; for the typical adult, this means renting or buying a residence. Housing goals usually include safe neighborhoods, dwellings of a reasonable size and with appropriate amenities, and housing in good condition. Sometimes people with psychiatric disabilities need support from rehabilitation providers to live successfully in their own homes. Rehabilitation providers need to make sure that the institutional demands of their agencies do not interfere with this goal. For example, agency regulations should not limit people’s options in regard to the neighborhoods where they live or the types of housing they wish to obtain. An equally important part of independent living is deciding with whom a person resides. Options include family members (either family-of-­origin members or members of a family created in adulthood—e.g., spouse and children), friends, roommates who help defray costs, or no one. In all cases, people need to decide for themselves with whom they want to live. Rehabilitation providers do not impose roommates on individuals because of institutional necessity. Adults are changeable creatures; desires about whom they choose to live with change over time. Perhaps a divorce is necessary. Perhaps older parents must move into assisted living, and people with disabilities must learn to live alone. Whatever the reasons, rehabilitation providers need to assist people with the evolution of their independent living needs.

Education and Employment Work serves many goals in North American culture. It is the basis on which most adults obtain an income to achieve their independent living goals. It is a source of identity; many people describe themselves in terms of their jobs. Indeed, work-­related issues often dominate conversations with friends and family members, and take up major portions of individuals’ time and energy. Work also provides a sense of place within the larger context of society. In no way is place meant here to suggest caste (i.e., the notion that some jobs denote better status than others). Rather, place is meant in the concrete sense, as defining where a person goes daily and with whom the person associates. In addition,

1.  People with Psychiatric Disabilities 23 

work is frequently the source of vocation—namely, the belief that “I, as an individual, am involved in personally meaningful industry.” Industry does not refer here to an economic sector, but rather to the psychological life function of being industrious or busy. For reasons like these, work is a significant priority for the general adult population and for people with psychiatric disabilities alike (Khare, Mueser, & McGurk, 2016). Education is the typical path many people take to begin accomplishing work goals. It provides the general credentials, such as a high school or college diploma, necessary for most jobs. Education teaches basic skills that are needed to be successful on the job. It also may provide work-­specific talents that are necessary for jobs in varying sectors (e.g., computer skills needed in an information technology position). Moreover, education provides nonspecific gains that are important for many young adults. It provides many with a sense of competence and mastery. Intellectual stimulation is also of interest to many adults and may continue in adult education programs after the needs for credentials and certification have passed.

Relationships Most adults have broad and significant interests in interpersonal relationships. They seek to change the form of interactions with their family-of-­origin members from one of dependence to launching, becoming independent, and setting up an ongoing, mutually loving relationship with parents and siblings. Adults search for significant others with whom they can be intimate and develop long-­standing relationships. In many cases, these intimate relationships yield children, with all the promise and challenges they entail. Adults also seek to extend their networks of friends, neighbors, and coworkers.

Health All adults have physical, dental, and mental health problems that vary in severity. People with psychiatric disabilities seem to have a significant number of physical illnesses, which may be related to lifestyle issues, social disadvantage, and psychiatric medications (Liu et al., 2017). Rehabilitation programs seek to help them work closely with the general medical system to address not only these immediate illnesses but also the lifestyle habits that may be exacerbating these illnesses. Although, by definition, people with psychiatric disabilities have significant mental illness, not all mental illness may cause distress. For example, some aspects of mania are experienced as pleasant, and some experiences of personality disorder are not viewed as mental illness. Similarly, some hallucinations or delusions may not be disturbing to an individual, even though they are signs of psychosis. The rehabilitation provider’s task is to assist the person with psychopharmacological and psychotherapeutic interventions for symptoms that are distressing. Health is not just an issue of avoiding illness. Adults also seek wellness. This includes physical issues related to diet and exercise. In addition, it includes those physical, psychological, and spiritual experiences that help a person achieve what they view as a personally full and meaningful life.

Spiritual Life and Recreation Work, relationships, health, and housing are not enough for a meaningful adult life. Recreation provides an opportunity to broaden one’s interaction with and enjoyment of the world. Recreation may involve formal planned activities (e.g., hobbies) or spontaneous

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I.  Understanding Psychiatric Disabilities

experiences. Family, friends, and others are sometimes important for recreation. Some forms of recreation require significant resources, while others can be enjoyed without such assets. The rehabilitation provider helps the person survey activities that may be recreational for them, and obtain access to these activities. The rehabilitation provider also problem-­solves with the person on how they can obtain the necessary resources to enjoy a specific type of recreation. Social thinkers have distinguished religiousness, or participating in a community of people who gather around common ways of worshiping, from spirituality, or thinking about oneself as part of a larger spiritual force (Oxhandler, Narendorf, & Moffatt, 2018). People with psychiatric disabilities describe spiritual pursuits as a way to express their identity, make meaning out of life experiences, cope with symptoms, and discuss their experiences (Milner, Crawford, Edgley, Hare-Duke, & Slade, 2019). One nationwide survey of people with psychiatric disorders showed that 67.5% of respondents viewed themselves as religious and 85.1% as spiritual (Corrigan, McCorkle, Schell, & Kidder, 2003). Findings from this study also showed that both religiousness and spirituality were associated with psychological well-being and diminished psychiatric symptoms. Hence, an important goal of rehabilitation providers is to help people with psychiatric rehabilitation explore their religious and spiritual goals, and to access services and people who will assist the persons in achieving these goals.

SOCIAL DISADVANTAGE People with serious mental illness and psychiatric disabilities often experience social disadvantage. They may have low incomes, may have less education, may be homeless, and frequently come from culturally disenfranchised groups. Longitudinal research finds that individuals with lower socioeconomic status are more likely to develop mental illnesses, which can initiate a cascade into physical illness and greater poverty (Kivimäki et al., 2020). Research also suggests that serious mental illness leads to a downward drift into social disadvantage (Sylvestre, Notten, Kerman, Polillo, & Czechowki, 2018). Direction, however, is beside the point; many of the problems with which people with psychiatric disabilities struggle may be a function of their social disadvantage as much as, or more than, the symptoms and dysfunctions of their illness. People with psychiatric disorders are often detained and subsequently involved in the justice system. This can occur in both criminal and civil courts, and can range from minor misdemeanors to charges involving severe violence. In fact, the jail and prison system is now believed to be the biggest provider of mental health services to people with serious psychiatric illnesses. The nature of these problems is more fully discussed in Chapter 14. There are three points to consider here. First, criminal and/or civil court involvement can significantly derail the pursuit of goals in the other five domains. Second, court participation and the coercion it frequently entails can in its own right be unsettling to most people. Third, these problems are likely to be caused by disabilities and by social disadvantage. Hence, rehabilitation programs help people navigate the various levels and intricacies of the justice system, so they can meet the courts’ demands, cut their ties with the police, and return to their principal goals of independent living, work, relationships, and health. People with serious mental illness get sick and die at much younger ages than peers. This is the primary topic of Chapter 15. In part, this situation reflects the lifestyles of people with psychiatric disabilities and the lower-­quality physical health services that are

1.  People with Psychiatric Disabilities 25 

often provided for this group. The research reviewed in Chapter 15 poignantly shows that health and health care are even worse for people with disabilities when they are from ethnic-­minority groups or have low incomes. The message here reinforces the bidirectional mandate of rehabilitation services. Providers need to help people learn skills to accomplish goals in the face of their disabilities. However, providers also need to address community barriers that undermine goals. An effective rehabilitation program thus has its team members wear multiple hats. This point is made repeatedly in subsequent chapters.

STRENGTHS FOCUS As stated earlier in the chapter, although discussion of diagnosis, symptoms, dysfunctions, course, and disabilities helps rehabilitation providers better understand the challenges faced by persons with serious mental illness, this kind of discussion tends to frame these persons as victims of their disabilities, without recognizing individuals’ positive assets. Each area of symptoms and dysfunctions specific to a disorder suggests not only problems blocking life goals but also possible strengths on which a person may draw to accomplish their goals. Examples of possible strengths are summarized in Table 1.2. Note that this is not meant to be an exhaustive table. Instead, the rehabilitation provider must actively engage the person to assess what their specific profile of strengths might be. Although affect is frequently distressed by psychiatric illness, people with psychiatric disabilities may have several strengths in this domain. Among other possibilities, emotions may motivate individuals to act against their symptoms and achieve their goals. People with psychosis often experience diminished perceptual and cognitive abilities. But despite these limitations, the majority of adults with psychiatric disability have the ability to make decisions regarding their health (Calcedo-Barba et al., 2020). Among the greatest strengths on which a person with disabilities may draw is motivation. Namely, despite the hurdles thrown up by symptoms and society, the person wants to achieve work, independent living, relationships, and other goals. Symptoms and dysfunctions

TABLE 1.2.  Possible Strengths That May Correspond to the Domains Defining Symptoms and Dysfunctions Domains

Possible strengths

Affect

• Experiences the full range of emotions. • Is concerned about emotions that are “out of control” or distressing.

Perception and cognition

• Is able to orient to task at hand. • Is able to problem-solve. • Is able to understand the basics of human interaction.

Motivation

• Is motivated to achieve specific goals. • Is motivated to work with rehabilitation programs and other resources to accomplish goals.

Interpersonal functioning

• Has some family members, friends, neighbors, and/or coworkers who provide support and companionship.

• Has rehabilitation providers and/or peers who provide support and companionship.

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I.  Understanding Psychiatric Disabilities

often interfere with interpersonal relationships. Nevertheless, most people with serious mental illness have family members or friends on whom they might rely and who rely on them. Alternatively, rehabilitation providers or peers with psychiatric disabilities are also frequently available to step in for support and companionship.

SUMMARY AND CONCLUSIONS The answer to the question “Who are people with psychiatric disabilities?” is simple, as well as multilevel and complex. The simple definition is straightforward: People with psychiatric disabilities are, first and foremost, people. They have the same types and breadth of life goals as others in their culture. Unfortunately, achieving these goals is undermined by the disabilities that arise from serious mental illness. They are also impeded by community factors and

PERSONAL EXAMPLE Joel Jenkins Revisited This chapter has begun with the complex stories of four people with serious mental illness. What might we make of one of these persons given the information reviewed in this chapter? How might the concepts reviewed in this chapter expand our understanding of Joel Jenkins and his needs for psychiatric rehabilitation? Joel is experiencing what is likely, because of his age, to be an early phase of schizophrenia. His symptoms seem to be acute, tumultuous, and problematic for his parents. Frequent hospitalization is likely to be interfering with the kind of goals that would dominate a 22-year-old’s life: completing education, beginning his career, moving out of the family-of-­ origin home, and building intimate relationships. Instead, his frequent, hostile exchanges with his parents have yielded significant problems with the police. He is becoming enmeshed in the court system and finding his life options diminished by the demands of the judge. His court troubles appear to be further exacerbated by marijuana use: Smoking pot is evidently both worsening his symptoms and increasing police involvement in his life. Joel has identified several life goals. He would like to move out of his parents’ home and find a place of his own. He recognizes that to do this successfully, he will need to find a job that pays a reasonable salary. He also recognizes that his recurring psychotic symptoms and agitation are likely to interfere with these goals in the short term. So, in addition to work with job and housing coaches, the rehabilitation team is helping Joel and his psychiatrist to manage his antipsychotic medications more effectively. Joel is also working on harm reduction skills to diminish his use of marijuana. Joel’s rehabilitation plan is influenced by his living in a small town. The breadth of services may be limited, requiring some innovation on the part of the rehabilitation team. Moreover, job hunting may be a bit more difficult in a small community where Joel is well known. Again, the rehabilitation team needs to think innovatively about how potential employers’ attitudes can be enhanced to make sure that stigma does not undermine Joel’s options. Joel has several strengths. He is also strongly motivated to get back to work. Joel has engaged closely with his rehabilitation job coach to develop a reasonable plan for achieving his vocational goals. He helps around the house, doing his own laundry, caring for the family pets, and enjoys cooking meals. Despite the angry and sometimes violent battles at home with his parents, Joel’s mother and father are an important support system for him.



1.  People with Psychiatric Disabilities 27

social disadvantage. Effective rehabilitation must therefore be bidirectional, addressing both individual and community factors. The complexity of the answer to this chapter’s question lies in understanding the barriers to achieving life goals. Diagnoses represent mental illness syndromes comprising distressing symptoms and disabling dysfunctions. As a result, people are unable to accomplish social roles and goals in such important life domains as work, independent living, income, relationships, and health. Course of illness is described by a complex mix of onset, trajectory, and end state. Course of a disorder is exacerbated by several factors, including age of onset, gender, familial history, stress, and substance use. Co-­occurring substance use, in particular, is a high-rate phenomenon in psychiatric disabilities that can have a serious effect on individuals’ life goals. People with psychiatric disabilities are not well described solely in terms of their symptoms, dysfunctions, and disabilities. Their strengths constitute an equally important part of the picture. A focus on strengths reminds us that people with disabilities, like everyone else, are complex beings with many characteristics. A strengths focus also highlights the resources that may be drawn upon as a person engages in their rehabilitation plan. A combination of the simple picture of the person as person, recognizing the individual’s strengths and limitations, provides the fullest answer to our opening question.

CHAPTER 2

Stigma and Mental Illness

R

ehabilitation has the combined agenda of helping people attain their goals by assisting them in dealing with disabilities that block these goals and addressing the community contexts in which these goals play out. Chapter 2 focuses on community variables, in an effort to understand the beliefs and behaviors that either undermine or promote the goals of people with psychiatric disabilities. Specifically, the chapter reviews the intended and unintended consequences of populations’ endorsing the stereotypes of mental illness, thereby setting up communities where the aspirations of people with mental illness are undermined by prejudice and discrimination. Public stigma convinces people in positions of power not to extend rightful opportunities to those labeled with mental illness (e.g., landlords decide not to rent to them, and employers decide not to hire them). Self-stigma occurs when the persons thus labeled internalize the stigma of mental illness, which then undermines their self-esteem and self-efficacy. People avoid these hurtful labels by not engaging in the mental health treatments from which many of these labels come. Contrary to stigma are ideas and behaviors that reflect affi rming attitudes: People can recover from mental illness and hence should be hopeful; they can achieve goals, and hence should be empowered in that pursuit; and strategies meant to achieve recovery and goals can be self-determined. The community has the legal and moral duty to make these concepts a reality. The purpose of this chapter is thus to review the impacts of stigma upon people with psychiatric disabilities, as well as families and others associated with these persons. It reviews both a cognitive-behavioral model of stigma as involving signals, stereotypes, prejudice, and discrimination, and a more complex model describing the interaction of stereotypes, prejudice, and discrimination with five types of mental illness stigma. The chapter then elaborates on the impacts of these five types of stigma in several life domains, including employment, education, housing, and health. It also includes a look at the role of the media in promoting the stigma of mental illness. Several texts provide excellent introductions to the effects of stigma, approaches to combating stigma, and lived experiences of people with serious mental illness, which might be consulted by the interested reader (Corrigan, 2018; Rüsch, 2023; Thornicroft et al., 2022). Stigma can be a significant barrier to rehabilitation goals. Hence, rehabilitation providers need to understand the breadth and depth of its effects, so that they can develop plans to challenge the barriers it produces. Chapter 6 reviews strategies for diminishing stigma. 28

2.  Stigma and Mental Illness 29 

WHY INDIVIDUALS STIGMATIZE PEOPLE WITH MENTAL ILLNESS Research on mental health stigma can be organized into a cognitive-­behavioral model like the one in Figure 2.1 (Corrigan, 2000) that describes the relationship between discriminative stimuli and consequent behavior by identifying the cognitions that mediate these constructs. In a simpler version of the model, persons with severe mental illness signal the public about their mental illness: “That person talking to himself on the park bench must be crazy.” These signals yield stereotypes and prejudice about persons with mental illness: “Crazy people are dangerous, and I am afraid of them.” Dangerousness is a common, globally endorsed stereotype associated with people with serious mental illness (Pescosolido et al., 2013; Seeman, Tang, Brown, & Ing, 2016), while fear is a typical prejudicial (emotional) reaction to this stereotype. Stereotypes and prejudice lead to behavioral reactions or discrimination: “I’m not going to allow dangerous people like that to move into my neighborhood.” Let’s take a closer look at each element of this model.

Signals That Lead to Stigma Erving Goffman (1963) defined stigma as a discrediting mark of one group (typically a minority) that results in another group (the majority) stealing rights and privileges that correspond with the marked group’s humanity. In this framework, persons with mental illness join many other groups that have experienced stigma, prejudice, and discrimination: ethnic groups, such as people of color in North America; women; religious groups; people with lower education; LGBTQ people; people with physical disabilities; and people who are overweight. As outlined in Figure 2.1, what Goffman calls stigma are the signals that evoke stereotypes, prejudice, and discrimination. The general public infers mental illness from four sets of signals: psychiatric symptoms, social skills deficits, poor physical appearance, and labels (Corrigan, 2005; Pescosolido, Martin, Lang, & Olafsdottir, 2008). Many symptoms of severe mental illness—­ inappropriate affect, unusual behavior, language irregularities, and talking to oneself aloud—are manifest indicators of psychiatric illness that frighten the public. Research has shown that symptoms like these tend to produce stigmatizing reactions (Cheung, Mak, Tsang, & Lau, 2018; Feldman & Crandall, 2007). Moreover, the poor social skills that are often a function of psychiatric illness also lead to stigmatizing reactions. Deficits in eye contact, body language, and choice of discussion topics (Hooley, 2010; Penn, Descriptive stimuli

Cognitive mediators

Behavior

Signals • Symptoms • Skill deficits • Appearance • Labels

Stereotypes and prejudice

Discrimination

FIGURE 2.1.  How signals lead to stereotypes, prejudice, and discrimination. Note that this model is essentially a cognitive-­behavioral model, with descriptive stimuli, cognitive mediators, and behavior.

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I.  Understanding Psychiatric Disabilities

Kohlmaier, & Corrigan, 2000; Silton, Flannelly, Milstein, & Vaaler, 2011) potentially mark a person as “mentally ill” and lead to stigmatizing attitudes. Finally, research suggests that personal appearance may lead to stigmatizing attitudes (Eagly, Ashmore, Makhijani, & Longo, 1991; Penn, Mueser, & Doonan, 1997; Schumacher, Corrigan, & Dejong, 2003). In particular, diminished physical attractiveness and personal hygiene may be manifest indicators of mental illness, leading to stereotypical responses from one’s community (e.g., “That unkempt person on the park bench must be a mental patient”). Note, however, the potential for mislabeling someone as “mentally ill” on the basis of these first three sets of signals. What might be eccentric behavior that is not characteristic of a psychiatric disorder (e.g., a musician singing aloud a piece from an upcoming concert) could be misunderstood as mental illness. Fewer social skills may represent shyness rather than mental illness. Physical appearance may also lead to false positives about judging someone as “mentally ill” (regarding someone as living with a mental illness when they in fact do not). Many street people with slovenly appearance are believed to be “mentally ill” when, in actuality, they are poor and homeless (Greenberg & Rosenheck, 2010; Koegel, 1992). Just as these three signs may yield false positives, so the absence of these signs often leads to false negatives. Many people can conceal their experiences with mental illness without making those around them aware that they are doing so. Goffman (1963) more fully developed this point when he distinguished between discredited and discreditable stigma, or what might be called obvious and hidden stigma. The former occurs when people have a mark that is readily perceivable. Examples of groups with obvious stigma include persons from a cultural minority with an apparent physical trait (e.g., the dark skin of most persons of African descent), leading them to believe that their differences are obvious to the public. Persons with hidden stigma, on the other hand, can conceal their condition; they have no readily observable mark that identifies them as part of a stigmatized group. For example, sexual orientation cannot be discerned from an obvious cue. Similarly, members of the general public frequently cannot determine whether a person is “mentally ill” by merely looking at them. Only in those cases in which a person is acutely ill and displaying outward signs of psychosis (e.g., talking to oneself) might they be accurately identified as “mentally ill.” Juxtaposing concerns about false positives with the idea that the stigma of mental illness may be hidden raises this question: What, then, is the definitive mark that leads to stigmatizing responses? Several carefully constructed studies suggest labels as key signals leading to stereotypes, prejudice, and discrimination (Abdullah & Brown, 2020; Jones et al., 1984; Link, 1987; Martinez, Piff, Mendoza-­Denton, & Hinshaw, 2011; O’Connor, Brassil, O’Sullivan, Seery, & Nearchou, 2022; Seery, Bramham, & O’Connor, 2021), though O’Connor et al.’s (2022) meta-­analysis of the literature on the impact of labeling on stigma points out that this is a complex process worthy of further study. People who are known as “mentally ill” are likely to become the victims of mental illness stigma. Labels can be obtained in various ways: Others can tag people with a label (e.g., a psychiatrist can inform someone that Ms. X is mentally ill); individuals can label themselves (e.g., Mr. Y can decide to introduce himself as a psychiatric survivor); or labels can be obtained by association (a person observed coming out of a psychologist’s office may be assumed to be living with a mental illness).

Is It Disease or Label? During the 1960s, questions arose regarding whether disabilities associated with mental illness originate entirely from medical conditions, or whether the labels attached to

2.  Stigma and Mental Illness 31 

mental illness create disabilities in their own right. Although this is a rather dated debate, it is still important in the 21st century, and hence is reviewed here. This divided mental health providers and researchers into factions supporting the medical model versus labeling theory. The key principle of labeling theory is that the label deviant (i.e., mentally ill) leads society to treat the labeled individual as different and flawed (Scheff, 1966, 1972). Common responses to the label mental illness include fear and disgust, leading people to minimize contact with, and socially distance themselves from, anyone marked in this way. As a result, a person with mental illness is exposed to adverse reactions (e.g., prejudice and discrimination) from others that facilitate the process of their socialization into the role of the mental patient (Braginsky, Braginsky, & Ring, 1969; Goffman, 1961). This process causes the individual with mental illness to exhibit continued deviant behavior, fitting the label and stabilizing the mental illness (Scheff, 1966). Alternatively, the label of mental illness can become a self-­fulfilling prophecy, in which the person acts “crazy” in order to meet the expectations of the public mark (Scheff, 1972). This kind of self-­fulfilling prophecy leads to continued stigma. Critics have countered labeling theory by arguing that aberrant behavior, and not the label mental illness per se, is the source of negative responses from the public (Gove, 1982; Huffine & Clausen, 1979; Lehman, Joy, Kreisman, & Simmens, 1976). Others have argued that the impact of stereotypes on persons with mental illness is temporary, posing only a minor and brief problem for these persons (Gove, 1980; Gove & Fain, 1973; Karmel, 1969). Gove and Fain (1973) countered labeling theory’s concept of secondary deviance by arguing that psychiatric relapse is due solely to the recurrence of the mental disorder; it is not affected by the label. According to Gove (1975), the label does not elicit negative societal reactions; rather, negative reactions are due to the bizarre behavior often displayed by persons with mental illness. Other researchers concluded that there generally is no negative reaction toward people labeled mentally ill (Crocetti, Spiro, & Siassi, 1971). In an effort to resolve differences between labeling theory and Gove’s medical model, Link, Cullen, Frank, and Wozniak (1987) conducted a study in which label and aberrant behavior were manipulated in a series of vignettes. Results indicated that members of the general public were likely to stigmatize a person labeled “mentally ill,” even in the absence of any aberrant behavior, if they held the belief that people with mental illness are dangerous. Link and colleagues (1987) posed a modified labeling theory to make sense of the diverse literature, concluding that psychiatric labels are associated with negative societal reactions that exacerbate the course of persons’ disorders. This represents a middle ground between Scheff’s original labeling theory and Gove’s medical explanation. Aberrant behavior causes negative reactions from society that lead the public (and the individuals exhibiting this behavior) to label mental illness negatively; this can exacerbate individuals’ existing disorders. Although the debate over the mechanics of labeling remains unresolved, it seems clear that stigma worsens the lives of people suffering from mental illness (Corrigan, 2018; Rüsch, 2023).

Stereotypes Social psychologists view stereotypes as knowledge structures that are learned by most members of a social group. Stereotypes are efficient means of categorizing information about social groups. They are considered “social” because they represent commonly agreed-upon notions of groups of persons (Pescosolido et al., 2013). They are “efficient”

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I.  Understanding Psychiatric Disabilities

because people can quickly generate impressions and expectations of individuals who belong to a stereotyped group. Stereotypes about mental illness include dangerousness, unpredictability, incompetence, and character weakness. Of these, dangerousness (and the resulting fear) is probably most troubling for people with mental illness, so it is discussed here in some detail.

Dangerousness Research consistently shows that the general public views people labeled with mental illness as dangerous (Schomerus et al., 2012; Pescosolido, 2011; Pescosolido et al., 2013); in fact, these perceptions have increased over the past 20 years by about 10% (Pescosolido, Manago, & Monahan, 2019). Perceptions of dangerousness lead to fear, to calls for distancing from those with the mental illness label, and arguments that people with mental illness should be forced into treatment. Similar to the controversy around labeling theory described earlier, people have argued on the one hand that the stigma of dangerousness reflects the empirical fact that, as a group, persons with mental illness are indeed more violent, and on the other hand that dangerousness is a false and egregious stereotype (Corrigan & Cooper, 2005). A meta-­analysis of the literature examining risk of violence toward others among people with schizophrenia spectrum disorders found that there was on average a statistically elevated risk for violence among men and women (Whiting, Gulati, Geddes, & Fazel, 2022). The vast majority of women and men living with schizophrenia are not violent. Applying the dangerousness stereotype to people living with serious mental illness broadly would, again, lead to many false positives (“Because they have schizophrenia, they must be violent!”) and associated experiences with prejudice and discrimination. The relationship between mental illness and violence is quite complex and can be partially explained by other relationships. Consider, for example, that the mental illness label is associated with demographic characteristics that have a stronger demonstrated tie to violence; that people committing violent crimes are viewed more frequently as living with a mental illness because of the psychiatrization of criminal behavior (Abram & Teplin, 1991; Bonfine, Wilson, & Munetz, 2020; Monahan, 1973); that people with mental illness are overrepresented in the criminal justice system, perhaps because of their label (D. Hall et al., 2019), and hotspots for crime are also places where many individuals with serious mental illness find themselves living (Weisburd & White, 2019). Finally, the high rate of news stories depicting people with mental illness as dangerous does not accurately reflect the level of violence among people with psychiatric disorders, although it does demonstrate how the media (re)produce society’s fascination with crime in any group (Wahl, 1995). Consider, for example, research findings that people of color are overrepresented as dangerous in the news, advertising, and entertainment media (Brooks & Hébert, 2006; Goodwill et al., 2019; Robinson, 2015). The role of the media is discussed in more detail later in this chapter. It is of critical importance that the public and psychiatric rehabilitation practitioners are aware of the overrepresentation of violence among marginalized groups (i.e., people living with mental health conditions and people of color) to prevent discrimination.

Difference There is also a content-less stereotype: difference (Link & Phelan, 2001). This is the belief that “People with mental illness are different from me”—not necessarily because

2.  Stigma and Mental Illness 33 

PERSONAL EXAMPLE Shania Robinson Couldn’t Get a Job Shania Robinson had been struggling with the challenges of schizophrenia since it had disrupted her college education some 12 years earlier. Despite being hospitalized eight times, she finally was able to graduate from the state university with a bachelor’s degree in business administration. She had completed an internship at an accounting firm, with support from a local job coach. She also had much better control over her psychotic symptoms after starting an atypical antipsychotic medication and gaining the support of a few family members and close friends. She thought that through regular meetings with a job coach, she might be able to handle a full-time job at an entry-level position. Shania lined up four interviews with local businesses through the university’s placement office. During the first interview, the prospective employer noticed that she had several gaps in her resume. When asked about these, Shania reported that those were periods when she had taken time off from school to treat her illness. “You were in the psychiatric hospital,” asked the interviewer. “Only two of those times. Mostly, I just needed some time away from the pressures of school while I learned to adjust to my medication.” “Well, at least you’re through that stage in your life,” the interviewer said. Shania responded, “Oh, yes, sir. With Dr. Halpiniak’s assistance, and careful monitoring of both my warning signs and my meds, I have total control over the illness.” “My goodness, you still have this thing?” “Well, yes, in some ways. Some of the problems with schizophrenia continue.” The employer was noticeably shocked by this information. “Schizophrenia! I didn’t know you had schizophrenia. I didn’t think people could live outside of a hospital with that kind of disease.” The interviewer then looked at his watch and said, “Well, our time is up. You are one of several applicants we are talking to. We will get back to you next week.” Unfortunately, the firm never did get back to her. Shania learned quickly that if she did not produce alternative explanations for blanks in her resume, other employers were similarly likely to bar her from job opportunities.

of a specific characteristic, but just different. Difference is usually a harmful attribution, because with difference comes low status: “You belong to a different group (the mentally ill), which is beneath mine.” Social desirability—the desire not to endorse stereotypes publicly, to avoid being viewed disapprovingly as a bigot—often seems to suppress most stereotypes. People do not seem to agree readily in public, for instance, that those with mental illness are dangerous or unpredictable. The perception of difference, however, is relatively unaffected by social desirability and much more sensitive to opinions about people with mental illness (Corrigan, Bink, Fokuo, & Schmidt, 2015).

Prejudice and Discrimination As outlined in Figure 2.1, stereotypes may lead to prejudice and discrimination. Just because people have knowledge of a set of stereotypes does not imply that they agree with them (Jussim, Nelson, Manis, & Soffin, 1995). For example, many persons can recall stereotypes about different racial groups but do not agree that the stereotypes are valid. People who are prejudiced, on the other hand, endorse these negative stereotypes

34

I.  Understanding Psychiatric Disabilities

(“That’s right; all persons with mental illness are violent!”) and generate negative emotional reactions as a result (“They all scare me!”). Prejudice is also viewed as a general attitude toward a group. In contrast to stereotypes, which are beliefs, prejudicial attitudes involve an evaluative (generally negative) component. Prejudice, which is fundamentally a cognitive and affective response, leads to discrimination, the behavioral reaction (Crocker, Major, & Steele, 1998). Prejudice that produces anger can lead to hostile behavior (e.g., physically harming a member of a minority group) (Weiner, 1995). Regarding persons with mental illness, angry prejudice may lead to withholding help or replacing health care with services provided by the criminal justice system (Corrigan, 2000). Fear may lead to avoidance; for instance, employers do not want persons with mental illness nearby, so they do not hire them (Corrigan, Markowitz, Watson, Rowan, & Kubiak, 2003; Van Beukering et al., 2021). Beliefs that people with mental illness are incompetent, another common stereotype about people with psychiatric disabilities, may lead to emotional reactions of pity and result in employment discrimination (Hipes, Lucas, Phelan, & White, 2016).

THE INTERACTIONS OF STIGMA STRUCTURES WITH TYPES OF STIGMA Figure 2.1 has grounded the foundations of stigma in three basic structures: stereotypes, prejudice, and discrimination. These structures explain not only the stigmatizing experience of mental illness but also the processes involved in racism, sexism, ageism, homophobia, and other types of egregious biases. A more complete picture of the mental illness experience crosses the three structures with five types of mental illness stigma: public stigma, self-­stigma, label avoidance, structural stigma, and courtesy stigma. Figure 2.2 illustrates these interactions. As shown in Figure 2.2, stereotypes, prejudice, and discrimination are manifested differently, depending on the type of stigma. Public stigma, self-­stigma, and label avoidance have their effects at the level of the individual person with psychiatric disabilities. Structural stigma has its impact on people through societal institutions. Courtesy stigma or stigma by association harms those associated with people with mental illness—­families, friends, and care providers. The specific impact of each type of stigma is reviewed next.

Label avoidance

Structural stigma

Courtesy stigma

“I am unreliable.”

Diagnosis of mental illness means “crazy.”

Positive personnel actions are suspended.

Parents are to blame for a child’s mental illness.

Person with mental illness does not take on new tasks.

Individual refrains from going to the clinic to seek help.

Person with mental illness is not promoted.

Friends avoid parents.

Public stigma Self-­stigma Stereotypes and prejudice (cognitive)

“He is dangerous.”

Discrimination Employer (behavioral) refuses to hire person with mental illness.

FIGURE 2.2. A matrix for understanding mental illness stigma: the interaction of stereotypes, prejudice, and discrimination with five types of stigma.

2.  Stigma and Mental Illness 35 

THE IMPACT OF PUBLIC STIGMA Most researchers and advocates agree: People with mental illness suffer significant impact from stigma. As a result, stigma greatly hinders these persons’ rehabilitation goals. This section focuses on two such examples of negative impact. First, stigma robs people of rightful life opportunities in various domains. Two domains that are especially relevant to the lives of people with mental illness are employment and housing. Second, the general health care system seems to withhold appropriate medical treatments because of mental illness stigma. We consider each of these areas in turn.

The Loss of Rightful Life Opportunities Stereotypes, prejudice, and discrimination can rob people labeled mentally ill of important life opportunities that are essential for achieving life goals. Two goals in particular are central to the concerns of people with serious mental illness: obtaining personally meaningful employment and living independently in safe and comfortable housing. Stigma’s role as a barrier to obtaining good jobs and housing may be understood in terms of Link’s modified labeling theory (Link, Cullen, Struening, Shrout, & Dohrenwend, 1989). Namely, these problems may partially occur because of the disabilities that result from serious mental illness (Corrigan, 2005). Many people with serious mental illness lack the social and coping skills to meet the demands of the competitive workforce and independent housing. Nevertheless, the problems that many people with psychiatric disabilities have in these domains are further exacerbated by labels and stigma. People with mental illness are frequently unable to obtain good jobs or find suitable housing because of the prejudice of key members in their communities: employers and landlords. Several studies have documented the public’s widespread endorsement of stigmatizing attitudes (Angermeyer, Matschinger, & Schomerus, 2013; Parcesepe & Cabassa, 2013; Pescosolido et al., 2013; Thornicroft et al., 2022). These attitudes have a deleterious impact on the chances of stigmatized persons’ obtaining and keeping good jobs (Brouwers et al., 2016; Hipes et al., 2016; Van Beukering et al., 2021) and leasing safe housing (Reilly, Ho, & Williamson, 2022; Rüsch, 2023). Classic research by Farina and Felner (1973) poignantly illustrates the nature of the problem. A male confederate, posing as an unemployed worker, sought jobs at 32 businesses. The same work history was reported at each of the job interviews, except that 50% of the interviews also included information about a past psychiatric hospitalization. Subsequent analyses found that interviewers were less friendly and less supportive of hiring the confederate when they added the information about their psychiatric hospitalization.

The Reaction of the Primary Care System People with serious mental illness experience health challenges yielding alarming morbidity rates (Correll et al., 2017; Lawrence, Kisely, & Pais, 2010; Mai, Holman, Sanfilippo, Emery, & Preen, 2011; WHO, 2005), and they die, on average, 10–30 years earlier than their cohorts (Walker, McGee, & Druss, 2015; Saha, Chant, & McGrath, 2007). In part, these phenomena occur because of health system failures—for example, absence of integrated care services (Liu et al., 2017; Lutterman, Hogan, Phelan, & Mazade, 2010) or insufficient insurance coverage (Druss & Goldman, 2018; Druss & Mauer, 2010). However, research also suggests that some provider decisions may worsen health

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I.  Understanding Psychiatric Disabilities

outcomes. Compared to patients not identified with mental illness, research has shown that health providers are less likely to refer patients with mental illness for mammography (Koroukian, Bakaki, Golchin, Tyler, & Loue, 2012; Thomas et al., 2018), inpatient hospitalization after diabetic crisis (Sullivan, Han, Moore, & Kotrla, 2006), or cardiac catheterization (Druss, Rosenheck, & Sledge, 2000). Despite research demonstrating the high prevalence of diabetes among people with severe mental illness and recommendations for screening among this population, 70% of people taking antipsychotic medications (a risk factor for metabolic syndromes) remain unscreened for such health conditions (Mangurian, Newcomer, Modlin, & Schillinger, 2016). Provider endorsement of stigma may be one influence on these health care decisions (Jones, Howard, & Thornicroft, 2008; Thornicroft, Rose, & Kassam, 2007; Vistorte et al., 2018). One study examined the relationship between stigma and treatment decisions in primary care and psychiatric physicians and nurses (Corrigan, Mittal, et al., 2014). Results showed that providers who endorsed stigmatizing ideas about a patient with mental illness presenting for arthritic pain were less likely to refer the person for a consultation and less likely to refill the person’s analgesic prescription. This relationship was demonstrated equally across primary care and mental health care providers. People with mental illness cannot obtain services when providers fail to offer them or do so contrary to practice standards.

THE IMPACT OF SELF-­STIGMA Living in a culture steeped in stigmatizing images, persons with mental illness may accept these notions and suffer diminished self-­esteem, self-­efficacy, and confidence in their own future as a result (Corrigan & Rao, 2012). Persons with mental illness like Kathleen Gallo (1994) have written eloquently about this kind of self-­stigma: I perceived myself, quite accurately unfortunately, as having a serious mental illness and therefore as having been relegated to what I called “the social garbage heap.” . . . I tortured myself with the persistent and repetitive thought that people I would encounter, even total strangers, did not like me and wished that mentally ill people like me did not exist. Thus, I would do things such as standing away from others at bus stops and hiding and cringing in the far corners of subway cars. Thinking of myself as garbage, I would even leave the sidewalk in what I thought of as exhibiting the proper deference to those above me in social class. The latter group, of course, included all other human beings. (pp. 407–408)

First-­person narratives such as this, as well as other subjective data, provide a compelling illustration of the impact of mental illness stigma on a person’s self-­esteem (Davidson, 1992; Estroff, 1989; Russinova, Mizock, & Bloch, 2018; Strauss, 1989). Qualitative data of this sort have been augmented by quantitative surveys of persons with mental illness. For example, studies of persons with mental illness and their families have demonstrated that diminished self-­esteem and Quality of Life is a significant problem for people living with serious mental illnesses who internalize stigma (Dubreucq, Plasse, & Franck, 2021). Self-­ stigma has been described in a regressive model (illustrated in Figure 2.3) reflecting what may be called “three A’s”: awareness of stereotypes (“I know most people believe people with mental illness are dangerous”), agreement with them (“I agree; most people with mental illness are dangerous”), and application of the stereotypes to oneself (“I am mentally ill, so I must be dangerous”). This process leads to diminished self-­esteem (“I must be a bad person because I am mentally ill and dangerous”) and diminished

2.  Stigma and Mental Illness 37 

PERSONAL EXAMPLE Shanté Johnson Thought, “I’m Mentally Ill, So I Must Be Bad” Shanté Johnson had heard her fair share of jokes and stories about “the mentally ill.” TV shows had taught her that “those patients” were either people to be feared or silly folks to be laughed at. She even recalled, with some shame, a time in high school where she had tormented a fellow classmate because he had been sent away to the “psycho ward” for a month. When Shanté turned 22, she began experiencing severe, unexplained depression. She was unable to sleep much, had almost no appetite, wondered whether being dead was better, and had little energy. Her family physician referred her to a psychiatrist who, concerned about her increasingly suicidal statements, talked Shanté into admitting herself into a hospital. Her first reaction to the other patients on the ward was denial: “Not me. I’m not like them. I’m not crazy. This is all a mistake. Just a temporary thing.” Unfortunately, Shanté was not able to control her symptoms easily. She experienced some reprieves from the loss of energy and inability to sleep. But every year or so thereafter, the symptoms seemed to come back, and the need for another hospitalization (or some other kind of break from regular life) became apparent. With the waxing and waning course, stigma began to set in. “Maybe everything they say about the mentally ill is true. People like them can’t really take care of themselves. They are unpredictable. They are suited for nothing but living in transient hotels on welfare. And now I am one of them.” Slowly, Shanté internalized the stigma and made more self-defeating statements: “I must be weak because I am mentally ill!” Her self-esteem suffered as well as her public face: “People can surely tell I am one of those ‘mentals.’ No wonder nobody wants to hang out with me.” In addition, her self-efficacy diminished: “Someone who is mentally ill and weak like me is not capable of getting a career. I just need to accept my lot in life—that I should go to day programs where I play bingo all day.”

self-­efficacy (“I am not able to do most normal things because I am mentally ill”), resulting in the “Why try?” effect (Corrigan, Michaels, & Morris, 2015; Corrigan, Larson, & Rüsch, 2009): “Why try to get a job? Someone like me isn’t worth it.” “Why try to live alone? Someone like me is not able.” Awareness of stigma is not synonymous with internalizing it (Crocker & Major, 1989). Although persons with mental illness report being aware of the negative stereotypes about them (Crabtree, Haslam, Postmes, & Haslam, 2010), they do not necessarily agree with these stereotypes (Hayward & Bright, 1997). Hence, not every person with a mental disorder reacts to the stigma of mental illness with loss of self-­esteem as outlined in Figure 2.3. On the contrary, some people with lived experience employ strategies to resist stigma (Firmin et al., 2017; O’Connor, Yanos, & Firmin, 2018). Stigma resistance through coping strategies such as deflecting and challenging stigma is associated with positive psychosocial outcomes (Firmin, Luther, Lysaker, Minor, & Salyers, 2016; Thoits & Link, 2016). Some individuals living with mental illnesses are energized by prejudice and express righteous anger in response to stigma (Corrigan, Faber, Rashid, & Leary, 1999; Rogers, Chamberlin, Ellison, & Crean, 1997). Righteous anger is evident in many of the narratives of persons with serious mental illness: “I was angry that I’d been crazy, but I

38

I.  Understanding Psychiatric Disabilities “3 A’s” Awareness of stereotypes? Yes No Agreement with stereotypes?

Righteous anger No

Indifference

Yes Application of stereotypes to the self? Yes Self-stigma process

No Indifference This process reduces:

“Why try?”

Self-esteem

“I’m not worth it.”

Self-efficacy

“I’m not able.”

FIGURE 2.3.  A regressive model of self-­stigma and of factors that protect people from vulnerability to self-­stigma.

was even more angry at the inhumane, hurtful, degrading, and judgmental ‘treatment’ I’d been subjected to” (Unzicker, 1989, p. 71; see also Davidson, Stayner, & Haglund, 1998; Estroff, 1995). Others neither experience lowered self-­esteem nor become righteously angry; instead, these individuals seem to ignore the effects of public prejudice altogether. Persons with intact self-­esteem respond to stigma with indifference or indignation, depending on their identification with the generic group of people with mental illness. Those with high group identification show heightened indignation in the form of righteous anger. Those who do not identify with the group are indifferent to stigma (Corrigan, 2002).

LABEL AVOIDANCE: THE IMPACT ON ENGAGING IN SERVICES People may try to escape the harmful effects of a stigmatizing label—“Hey, there’s Joe. He’s a mental patient!”—by avoiding one place where they might get tagged with stereotypes: the mental health provider’s office. Stigma is a significant barrier to care seeking and participation (Clement et al., 2015; Corrigan, 2004; Corrigan, Druss, & Perlick, 2014; Kosyluk et al., 2021; Schnyder, Panczak, Groth, & Schultze-­Lutter, 2017). Despite the availability of evidence-based treatments, epidemiological research suggests that people who might benefit from care do not receive it. Stigma is one reason why (Corrigan, Druss, et al., 2014). In 1990, only 24.3% of individuals with a serious mental illness in the United States sought care. By 2003, 40.5% of individuals with a serious mental illness received treatment—a significant improvement over 1990 but still only a minority of the population with a potential need for care (Kessler et al., 2005). The proportion was up by 2011 to 59.6% of people with serious mental illnesses (SAMHSA, 2012), but still over 40% had not received mental health services in the past year (SAMHSA, 2012). Over the next 8 years, a small increase was seen, with 64.5% of people with serious mental illness

2.  Stigma and Mental Illness 39 

receiving treatment in 2020 (SAMHSA, 2020). Moreover, once people with mental illness get into mental health care, they may drop out prematurely. Approximately one-fifth of people who seek treatment quit treatment prematurely, with over 70% of all dropout occurring after the first or second visit (Olfson et al., 2009). Additionally, a recent systematic review and meta-­analysis found that 49% of people with serious mental illnesses do not take their psychotropic medications as prescribed (Semahegn et al., 2020). More than 100 peer-­reviewed, empirical papers have showed relationships between label avoidance and care seeking for mental health problems (Clement et al., 2015). Research has demonstrated the phenomenon in older adults (Graham et al., 2003; Stewart, Jameson, & Curtin, 2015), adults (Kosyluk et al., 2021; Vogel, Wade, & Hackler, 2007), adolescents (Bowers, Manion, Papadopoulos, & Gauvreau, 2013; Chandra & Minkovitz, 2007; Radez et al., 2021; Radez, Reardon, Creswell, Orchard, & Waite, 2022), and children (Adler & Wahl, 1998; Radez et al., 2021). It has been examined in not only the overall population (Evans-Lacko, Brohan, Mojtabai, & Thornicroft, 2012) but also important subgroups, including veterans (Campbell et al., 2016; Hoge et al., 2004; Possemato et al., 2018), active military personnel (Greene-­Shortridge, Britt, & Castro, 2007; Sharp et al., 2015), police officers and other first responders (Haugen, McCrillis, Smid, & Nijdam, 2017; Royle, Keenan, & Farrell, 2009), health care providers (Gold, Andrew, Goldman, & Schwenk, 2016; Wrigley, Jackson, Judd, & Komiti, 2005), and parents making decisions about their children’s health care (Hinshaw, 2005; Kosyluk et al., 2022; Struening et al., 2001). It seems to be strongly moderated by gender (Levant et al., 2013; Pederson & Vogel, 2007) and ethnicity (Cheng, Kwan, & Sevig, 2013; Conner et al., 2010). The connection among stigma, care seeking, and participation is complex; it is influenced by several variables, including a person’s knowledge about mental illness and corresponding care, attitudes and actions of their support network, and cultural heritage.

STRUCTURAL STIGMA: UNDERSTANDING STIGMA AT THE SOCIETAL LEVEL Thus far, this chapter has provided an overview of two models of stigma, together with descriptions of cognitive-­behavioral processes in which individuals engage that harm people with mental illness (public stigma) or themselves (self-­stigma and label avoidance). The individual level of analysis only provides a partial picture of the egregious impact of stigma, however. Sociologists have also discussed how political, economic, and historical forces create societal-level phenomena that diminish the life opportunities of people with mental illness, and hence become stigma (Link & Phelan, 2001; Pincus, 1999). As shown in Figure 2.4, two levels of structural stigma in society have been identified: institutional policies and social structures. The key distinction between stigma at these levels and stigma at an individual level of analysis is the emergence of societal forms and structures that restrict the life opportunities of people with mental illness (Hatzenbuehler, 2016, 2017; Pugh, Hatzenbuehler, & Link, 2015).

Institutional Policies and Stigma Pincus (1999) argues that stereotypes and prejudice can have a major impact on people of color when they are enacted into rules that impede their opportunities. These rules can be formal legislation at various levels of government, such as the Jim Crow laws of the

40

I.  Understanding Psychiatric Disabilities INSTITUTIONAL POLICIES

SOCIAL STRUCTURES

Prejudice of people in leadership positions

The effects of prejudice and discrimination:

↓ Translated into laws and regulations that discriminate against people with mental illness

• historically • politically • economically Structures: • Lack of parity in health benefits appropriations

FIGURE 2.4.  Two levels of structural stigma: institutional policies and social structure.

late 19th to the mid-20th century that robbed Black people of their rights to vote, attend integrated schools, or use various public facilities. They can be company policies, such as banks’ not providing mortgages to members of minority groups in order to “red-line” neighborhoods. They can be less formal policies, such as restaurant chains’ instructions to employees to provide a lesser grade of service to people of color. In each case, one person (e.g., the CEO of a company) or a group of people (e.g., a legislative bloc) in a position of power has a prejudicial agenda and promotes this agenda by enacting policies that discriminate against a group. Similar examples are evident for people with mental illness, especially in government institutions (Conley, 2021). Research has discovered state laws that restrict the rights of people with mental illness in terms of fundamental opportunities and privileges such as employment, education, housing, health care coverage, jury service, voting, holding public office, marriage, and parenting (Hemmens, Miller, Burton, & Milner, 2002; Livingston, 2013; Walker et al., 2015). In fact, findings from Walker et al.’s survey suggest that restriction of political rights, such as the right to vote or hold public office, may be worsening for people with mental illness. Another study showed that, as of 2016, mental illness continued to be used as a rationale for restricting medical licensure (Dyrbye et al., 2017). Results suggested that it was the label of mental illness, rather than evidence of current psychiatric disability, that led to the restriction of medical practice. A third study comprehensively reviewed legislation from all 50 states in 2002 (Corrigan et al., 2005). Results showed that about one-­fourth of this legislation dealt with discrimination. Interestingly, half of this legislation seemed to extend protections against discrimination (e.g., establishing parity in health services’ funding for mental health services), while the other half seemed to promulgate discrimination (e.g., reduced parental rights for persons with mental illness).

Social Structures and Stigma Typically, institutional stigma arises from the prejudices of individuals in power who enact legislation and administrative rules that discriminate against people with mental illness (Pincus, 1996, 1999; Wilson, 1987). Sociologists have also identified stigma in social structures that develops historically as the result of the economic and political injustices wrought by prejudice and discrimination. Once again, this concept has mostly been used to explain racism and sexism. Pincus (1999), for example, describes the disparity of insurance rates for property across White and Black communities. Although agents

2.  Stigma and Mental Illness 41 

might explain this as the result of higher rates of street crime in lower-­income Black communities, it nevertheless results in higher premiums for people of color. The key element of stigma at the level of social structures is not the intent but rather the effect of keeping certain groups in a subordinate position. Hence, there is not clearly a prejudicial group in power maintaining stigma at this level; rather, it is the product of historical trends in discrimination. Inability to achieve parity in mental health insurance coverage with general medical coverage may have been an example of structural stigma related to mental illness (Feldman, Bachman, & Bayer, 2002). Although failure of legislatures to endorse parity may have been affected by the individual prejudices of some representatives and senators (Corrigan & Watson, 2003), it also represented the insidious effects of structural stigma. Namely, several decades of history in which insurance benefits for physical illness surpassed those for mental illness led to assumptions that greater benefits for mental health would produce diminished benefits for physical health—an assumption, by the way, that may not be borne out by actuarial evidence. The federal government moved to resolve this disparity by passing the Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act of 2008, which requires parity of mental health with medical and surgical benefits. Beginning in 2014, the Patient Protection and Affordable Care Act of 2010 (less formally known as the ACA or “Obamacare”) has further strengthened assurance of parity in mental health insurance coverage. The ACA reduced financial barriers to care for millions of Americans, including lowest-­income Americans, such as people living with serious mental illness (Glied, Collins, & Lin, 2020). Despite improvements in access to care brought about by the ACA, Texas and 19 other states challenged the ACA as unconstitutional in 2019. In June of 2021, the Supreme Court rejected this challenge to the ACA, and the ACA remains intact (Keith, 2021). Should the court have decided in favor of Texas and the 19 other Republican states, access to care would have been significantly impacted for millions of Americans. Such actions highlight the importance of political activism to support the rights of all Americans, including those with serious mental illness, to access affordable care. Significantly lower rates of federal monies for mental health research, compared to other areas of health research, remain another example of stigma at the level of social structures (Link & Phelan, 2001; Pugh et al., 2015). This demonstrates the circular nature of this type of stigma. Knowledge about mental illness that will diminish stigma, and hence lead to more enlightened policies about funding research, cannot be increased, because funding agencies are not supporting studies in the psychiatric arena at the same rate as they support studies of general medical conditions.

THE FAMILY’S EXPERIENCE OF STIGMA: COURTESY STIGMA, VICARIOUS STIGMA, AND SELF-­STIGMA/AFFILIATE STIGMA Family members and friends are also affected by public stigma and other types of stigma against persons with mental illness (Corrigan, Watson, & Miller, 2006; Moses, 2014; Phelan, Bromet, & Link, 1998; Wahl & Harman, 1989). Three specific types of stigma impact family members: courtesy stigma, self-­stigma (also referred to as felt stigma and affiliate stigma), and vicarious stigma. Goffman (1963) defined courtesy stigma as prejudice and discrimination extended to members of a group by virtue of their relationship with a stigmatized other. Studies have found that parents and siblings, spouses or other

42

I.  Understanding Psychiatric Disabilities

partners, and other family caregivers of persons with mental illness report feeling stigmatized to some degree, and work to manage their self- and public identity in various ways (Moses, 2014). According to Moses, courtesy stigma encompasses stigma enacted in both interpersonal and structural domains (Chou, Pu, Lee, Lin, & Kröger, 2009; Stengler-­ Wenzke, Trosbach, Dietrich, & Angermeyer, 2004; Yang et al., 2007). In addition, many studies refer to internalized stigma experienced by family members (also referred to as self-­stigma, affiliate stigma, and felt stigma). They may experience shame, blame, or contamination because of their relationship with relatives identified with mental illness (Kosyluk et al., 2022; Serchuk, Corrigan, Reed, & Ohan, 2021). A family member’s role vis-à-vis a “marked” family member (parent, child, sibling, or spouse/partner) relates to the nature and extent of stigma the “marked” member experiences (Moses, 2014). A parent is typically blamed for causing the stigmatized condition (Eaton, Ohan, Stritzke, & Corrigan, 2016, 2019); a sibling is viewed as genetically contaminated and may be blamed for failing to help manage the condition (Friedrich, Lively, & Rubenstein, 2008; Nechmad et al., 2000); a spouse/partner may also be blamed for poor illness management, as well as possibly degraded because of their voluntary association with the marked individuals (Buchanan, Kemppainen, Smith, MacKain, & Cox, 2011); and a child is often assumed to be genetically and/or psychologically contaminated by the parent’s condition, which renders the child “damaged goods” (Corrigan & Miller, 2004; Phelan, 2005). As mentioned earlier, self-­stigma experienced by parents can lead to label avoidance and impact parent’s willingness to seek help for their minor children who may be showing signs of challenges with mental illness (Corrigan, Druss, & Perlick, 2014; Kosyluk et al., 2022). This is troubling considering research that suggests early intervention is key for improving outcomes among people living with serious mental illnesses. Vicarious stigma consists of emotions experienced by parents when they witness their child being the object of prejudice and discrimination because of their mental illness; for example, when their child is not invited to a peer’s birthday party or is excluded from a school group or family function due to their challenges (Moses, 2014; Wahl & Harman,  1989). Parents often feel sad, guilty, frustrated, and angry when vicariously experiencing their child’s stigma (Corrigan, 2018; Eaton et al., 2016; Moses, 2014; Serchuk et al., 2021). Parents reporting greater levels of self-­stigma and greater levels of sadness due to vicarious stigma are also more likely to report greater depression and poorer quality of life (Serchuk et al., 2021).

INTERSECTIONALITY People living with mental illness are often members of other marginalized groups that carry with them their own stigma. The term intersectionality and the corresponding theory evolved from theories of feminism and critical race theory to help describe the experiences of oppression faced by Black women based on their intersecting, oppressed identities as women and people of color (Cole, 2009; Crenshaw, 1989). Intersectionality theory helps us to consider how categories of identity, difference, and disadvantage are jointly associated with outcomes. For example, the oppression and discrimination experienced by Black women is sometimes like that experienced by Black men, by White women, by a combination of these two identities, and sometimes a unique experience altogether. Intersectionality theory is relevant to understanding the stigma surrounding serious mental illnesses. People living with serious mental illness are complex, occupying

2.  Stigma and Mental Illness 43 

various identities related to, among social categories, race and ethnicity, socioeconomic status, co-­occurring disability identities, justice involvement, and homelessness. One or any combination of these identities can influence public perception and treatment of an individual living with a mental illness (Oexle & Corrigan, 2018). The experiences of a Black man with serious mental illness who is homeless may be very different from the experiences of a White man living with a serious mental illness who works a full-time job and lives in his own apartment. This also suggests the need for different approaches to challenging the stigma surrounding mental illness as it exists at multiple marginalized and intersecting identities.

THE MASS MEDIA AND STIGMA Entertainment and news media are often implicated in the widespread propagation of stigmatizing images. Wahl (1995) has summarized mass media’s negative effects in terms of three categories of the media: entertainment, news, and advertising.

Entertainment The entertainment industry frequently uses two stigmatizing images of people with mental illness. First is the violent and out-of-­control “psycho killer.” Media watch studies in the 1980s showed that more than two-­thirds of television shows and films including a character with mental illness portrayed that person as violent (Gerbner, 1985; Signorelli, 1989; Wahl & Roth, 1982). Films like Nightmare on Elm Street and Friday the 13th define an entire industry that abuses this image. Alternatively, the entertainment industry presents people with mental illness as comical buffoons. This image is seen in films like The Dream Team, where the characters portrayed by Michael Keaton, Christopher Lloyd, and Peter Boyle are alternately described as “nutty psychiatric patients,” “a motley crew of lunatics,” or “crazoids who hit the streets.” The 2000 film Me, Myself, and Irene combines violent and buffoonish images of mental illness. In the film, Jim Carrey portrays a police officer with a split personality who bounces between comic figure and possessed demon. “From gentle to mental” was the tag line used to market the film. More recently, the 2017 M. Night Shayamalan film, Split, created righteous anger among many people living with dissociative identity disorder (DID), their care providers, and advocates based on the portrayal of a person living with DID as a murderous villain (Nedelman, 2017).

News The news media can also be guilty of perpetuating stigmatizing images. Surveys of newspaper stories repeatedly represent people with mental illness in a violent light. It is a recurring and sobering fact that stories perpetuating notions of dangerousness have harmful effects on readers’ views of persons with mental illness (Ma, 2017; Ross, Morgan, Jorm, & Reavley, 2019). McGinty, Kennedy-­Hendricks, Choksy, and Barry (2016) conducted a longitudinal study of a random sample of 400 news stories on mental illness between 1995 and 2014. They found that, compared with the first decade of news coverage, stories published between 2005 and 2014 were more likely to talk about people with mental illness as perpetrators of mass shootings. Overall, 55% of the articles across the two decades talked about violence. Only 14% of the stories talked about successful

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I.  Understanding Psychiatric Disabilities

treatment for or recovery from mental illness. This study highlights the fact that little changed about the perpetuation of the dangerous stereotype surrounding mental illness across two decades and calls for more work to educate the media about their role in perpetuating stigma.

Advertising Advertising frequently uses stigmatizing images of mental illness to sell products. There was a time in U.S. history when merchants used disrespectful images of people of color to hawk wares. Consider restaurants that were called Little Black Sambo’s or Aunt Jemima’s Pancake House. Today, most Americans would be horrified if advertisers used any version of racial stereotypes to promote their products. Yet it is still common to hear radio spots talk about “crazy deals that could get you put away” or television commercials presenting “maniac salesmen out of control.” Direct-to-­consumer advertising (i.e., television and radio commercials, print advertisements, and social media posts) of psychiatric medications or telehealth services for common mental health conditions such as depression is increasingly common. Though such advertisements can serve to improve perceptions of the prevalence, treatability, and controllability of mental health conditions (Brown, 2017), it is important to pay attention to the messages delivered through such advertising, as they may inadvertently perpetuate stereotypes such as the idea that women are impacted more significantly by depression (Ma, 2017) or beliefs that people with mental health conditions are unworthy of help and incapable of recovery or self-­determination (Corrigan, Kosyluk, Konadu Fokuo, & Park, 2014).

Social Media With the growing trend toward consuming and sharing news through social media, it is important to acknowledge this as a source of public information about mental illness. Like print and television media, some limited literature suggests that inaccurate portrayals of mental illness on social media worsen public stigma (Ma, 2017; Ross et al., 2019). As with other forms of media, there is also growing evidence that accurate and affirming portrayals of mental illnesses through social media can have a positive impact on stigma.

THE OPPOSITE OF STIGMA: AFFIRMING ATTITUDES AND BEHAVIOR Focusing on stigma alone causes a problem: It fosters descriptions of what is wrong with the lives of people with psychiatric disabilities. Just as a strengths focus is essential for a full picture of such a person, so too is the obverse of stigma necessary for a full appreciation of psychiatric rehabilitation’s goals. Stereotypes, prejudice, and discrimination rob people of life opportunities in their communities. Affirming attitudes related to recovery and self-­determination replace notions of brokenness with ideas of hope and achievement. Self-­stigma fills persons with doubt, harms their self-­esteem, and undermines their confidence. Personal empowerment asserts that ultimate control over the life of any person with psychiatric disabilities belongs solely to that person. Affirming attitudes are not enough, however. Behavior change is also needed. These kinds of behaviors promote the affirmative vision that the public is responsible for helping people with mental illness achieve their life goals.

2.  Stigma and Mental Illness 45 

Affirming Attitudes Social attitudes and structures reflect affirming perspectives about an outgroup when they specify efforts to assist the outgroup in gaining opportunities available to the majority. Social inclusion, broadly speaking, has been defined as a societal zeitgeist that promotes the social determinants of health and perceived and real access to the economic, interpersonal, spiritual, and political resources available to all adults for obtaining their personal goals (Leff & Warner, 2006; Lloyd, Waghorn, Best, & Gemmell, 2008; Salzer, 2021). Three important conceptual evolutions in the mental health system—­recovery, empowerment, and self-­determination—have influenced ideas of social inclusion, or what we more broadly construe as affirming attitudes (Corrigan, Powell, & Michaels, 2014). Recovery reintroduces the ideas of “future” and “aspiration” into descriptions of persons with serious mental illness. As noted in Chapter 1, classic notions of schizophrenia (e.g., Kraepelin’s [1919/1971] dementia praecox) described it as marked by a progressive downhill course, with prognostic expectations of patients’ never being able to live independently, work, marry, or have children. Long-term follow-up studies, however, contradict such pessimism, finding that most people with mental illness can live good-­ quality lives outside of institutions (Harrison et al., 2001). These findings have led to psychiatric services that now foster hope for such persons in terms of attaining their goals. Out of recovery comes empowerment—the idea that people with mental illness must have final authority over not only their treatment but also the life goals that direct it. This means that these people need to be of equal status with family members, service providers, and others involved in their life trajectories. Research has found that empowerment includes five recurring themes: self-­efficacy and self-­esteem; resistance to powerlessness; optimism/control over future; righteous anger; and group/community action (Rogers et al., 1997; Rogers, Ralph, & Salzer, 2010). Some people believe that personal empowerment and self-­determination are different sides of the same coin. Self-­determination is promoted by helping persons grasp personal empowerment for themselves, as well as by directing the community not to erect barriers to the process. It is more transparently anchored in the belief that people with serious mental illness do have goals (e.g., going back to work, living independently, and/ or enjoying intimate relationships), and in the notion that these goals should be pursued and are achievable.

Affirming Behaviors Correcting the community biases and structures that prevent full integration will require affirmative actions. Affirmative action was originally thrust on the U.S. political scene as an executive order signed by President Lyndon Johnson directing federal contractors to develop a hiring plan that would increase the number of women and minorities in all job categories. This plan was seeking to resolve the historical disparities in hiring practices that kept people of color and women out of the better-­paying, higher-­status categories of work. More broadly put, affirmative action might be construed as any official effort that seeks to decrease structural and other forms of stigma by purposively and strategically increasing the opportunities of a stigmatized group. Two examples come to mind in terms of mental illness. Reasonable accommodations for people with psychiatric disabilities promote community integration. An important clause of the Americans with Disabilities Act of 1990 (ADA), reasonable accommodations are those provisions that employers must supply to employees with disabilities so

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that the employees can competently do their jobs. (See Chapter 3 for more discussion of the ADA.) The provision of these accommodations may not cause undue burden on employers and their business. Common examples of these kinds of accommodations include wheelchair-­friendly work environments, so that people with ambulatory disabilities can easily navigate these environments. More difficult to define have been accommodations for people with psychiatric disabilities (MacDonald-­Wilson, Rogers, Massaro, Lyass, & Crean, 2002; Mechanic, 2001). Workplace accommodations provided for people with mental illness can include flexible schedules and job coaching, so that people with mental illness can cope with the stress of job demands (Zafar, Rotenberg, & Rudnick, 2019). Such accommodations are fundamental to rehabilitation practices and are outlined throughout this book. On-the-job accommodations have been shown to be effective for limiting the impact of disability for people with serious mental illness, promoting improved job tenure, and have been shown to be cost-­effective for employers (Zafar et al., 2019). The U.S. Supreme Court’s ruling in Olmstead v. L. C. in 1999 is a second example in which court decisions have led to affirmative actions for people with mental illness that promote community integration. In this case, the state of Georgia was found to be in violation of the ADA because it did not provide community services to psychiatric inpatients (Cohen, 2001; Herbert & Young, 1999). In particular, the Court found that states could not avoid their duties under the ADA because they did not appropriate sufficient funds to support community programs for all people with psychiatric disabilities in need of these services. To comply with the ruling, states must develop comprehensive plans to end unnecessary institutionalization (Bazelon Center, 1999). Hence, the U.S. Supreme Court began requiring affirmative actions that challenge these kinds of structural stigmas, and these actions have been evolving over time (Sloan & Gulrajani, 2019). It is recognized that individuals with serious mental illness can live in community-based homes and still not experience full and rightful community integration. The Department of Justice has recently expanded Olmstead enforcement to the criminal justice system. Chapters 6, 10, and 11 more fully explore specific strategies that will undermine stigma and promote community inclusion.

SUMMARY AND CONCLUSIONS The loss of life opportunities experienced by people with psychiatric disabilities does not stem solely from the symptoms and dysfunctions of their illnesses. Public reaction in the form of stigma may also produce significant hurdles for these persons. Moreover, internalizing this stigma may fill a person with doubt, further undermining their efforts to successfully achieve life goals. Public stigma can undermine rehabilitation goals related to work, education, health, and housing. It can also exacerbate the interactions between people with psychiatric disabilities and the police. Self-­stigma and label avoidance can block people from seeking psychiatric and rehabilitative services that might assist them with their goals. They can harm a person’s sense of self-­esteem and self-­efficacy. Stigma is also a societal-level phenomenon: Institutional policies and social structures may either intentionally or unintentionally prevent people with mental illness from fully enjoying their rights as citizens, including access to the public mental health system. Service providers need to be aware of rehabilitation goals that decrease stigma. These include community integration, which seeks to replace public stigma with the commitment to helping people achieve their goals in their community, and personal empowerment, which

2.  Stigma and Mental Illness 47 

represents an essential process of rehabilitation—namely, ensuring that a person with mental illness has complete control of their life. Community integration and personal empowerment underpin all rehabilitation practices. As a result, the reader will see frequent mention of these principles throughout the remainder of the book. In addition, rehabilitation providers need to join with advocates and people with psychiatric disabilities to directly challenge the stigma of mental illness.

CHAPTER 3

What Is Psychiatric Rehabilitation?

P

sychiatric rehabilitation is the systematic effort to help adults with psychiatric disabilities to attain their personal goals. It is bidirectional in focus, seeking to influence both individuals’ strengths and challenges related to these goals, and the community contexts in which the persons will live them out. The remainder of this book articulates specific psychiatric rehabilitation practices that have been proven effective— or, when the evidence is lacking, practices that represent our best understanding of how to help in the rehabilitation process. Common to these practices is a set of fundamental concepts discussed in this chapter.

FUNDAMENTAL CONCEPTS IN PSYCHIATRIC REHABILITATION Many different classifications of the core principles of psychiatric rehabilitation have been proposed over the years (Anthony, Cohen, Farkas, & Gagne, 2002; Bond & Resnick, 2000; Cnaan, Blankertz, Messinger, & Gardner, 1988; Cook & Hoffschmidt, 1993; Dincin, 1995a; Hughes & Weinstein, 1997b; Pratt, Gill, Barrett, & Roberts, 1999). It sometimes seems that the development of psychiatric rehabilitation is the opposite of a theory-based field (Cnaan, Blankertz, Messinger, & Gardner, 1989). Hence Anthony et al. (2002) list eclecticism as one of the core principles, and Dincin (1995a) refers to the pragmatism of psychiatric rehabilitation, reflecting the fact that many of its most widely practiced approaches have been developed through a trial-and-error process. As a result, psychiatric rehabilitation often seems to be a hodgepodge of principles and practices lacking a meaningful framework. Some years ago, Corrigan (2003) proposed an integrated model resting on the key structures of rehabilitation: principles (the moral imperatives that guide people and society in dealing with disabilities), strategies (the tools that rehabilitation providers might employ to help persons with disabilities), settings (places where rehabilitation occurs), and roles (the different types of people who do rehabilitation). The framework is summarized in Figure 3.1 and reviewed here. Some of these principles are especially noteworthy because they challenge “old-school” notions of rehabilitation— namely, custodial approaches in which things are done for people, because it is believed that they are unable to do these things for themselves. Old-school notions are highlighted where notable. 48

3.  What Is Psychiatric Rehabilitation? 49 

Approaching the Person Recovery Hope Goals focus Resilience Early intervention Quality of life Strengths focus Dignity to fail

PRINCIPLES Approaching the Community* Self-determination Community inclusion Place first, then train Supports and modifications Real-world focus Inclusion Continuity of services Integration of services

* This includes the rehabilitation service system STRATEGIES Basic listening skills Problem solving Instrumental and social support Shared decision making Goal setting Skills training Transfer training Cognitive rehab/therapy Mindfulness Family education/support Relapse prevention Harm reduction Trauma-informed care Utilizing technology

SETTINGS Residential Psychiatric hospitals Halfway houses Person’s home Vocational Work settings Education settings

ROLES The person Their support system Professional providers Paraprofessional providers Peers

Activity/Recreation Day treatment Partial hospitalization Psychosocial clubhouse The community Faith-based communities Mutual support programs Self-help programs

FIGURE 3.1.  The principles, strategies, settings, and roles that define psychiatric rehabilitation.

Principles As noted earlier, psychiatric rehabilitation is bidirectional: On the one hand, it is meant to have an impact on individuals and their challenges and strengths relative to personal goals; on the other, it is meant to have an impact on their community (the venue in which goals are pursued and achieved). Psychiatric rehabilitation has evolved several important principles that guide providers in their engagement of people with disabilities and in the community in which they live.

Principles for Approaching the Person Recovery was hailed as the first principle of mental health services for people with psychiatric disabilities in both U.S. Surgeon General David Satcher’s report to the nation (U.S. Department of Health and Human Services [DHHS], 1999) and in the report of a commission appointed by President George W. Bush (New Freedom Commission on Mental Health, 2003). Recovery is recognized globally by organizations such as the WHO and

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the World Psychiatric Association as a human right (Amering, 2017). Recovery-based health systems echo the research summarized in Chapter 1; namely, most people learn to live with psychiatric disabilities, even if they do not erase the challenges altogether. In part, this reflects notions of recovery as an outcome, meaning that the symptoms of illness and barriers of disabilities diminish or disappear. But recovery is also a process— one in which, regardless of a person’s current symptoms and disabilities, hope is the rule rather than the exception. Rehabilitation providers foster settings and interactions in which future opportunity and success are framed as not just possibilities but probabilities. This does not mean that rehabilitation providers ignore people’s worries about the future or their questions of doubt and self-worth. To do so would be to ignore essential experiences. Instead, these experiences are framed in terms of hope. The spirit of recovery is contrary to older notions of mental illnesses—namely, that people with these illnesses do not improve and should therefore expect to live with no goals and no accomplishments (Corrigan, 2013). That is why a third principle of psychiatric rehabilitation is a focus on goals. In fact, goals are the defining center of rehabilitation. Regardless of a person’s symptoms or disabilities, what the person wants to accomplish is the essential question. Goals here reflect the key life domains of adults: education, work, housing, relationships, health, faith, and recreation. Strategies to help people identify and act on goals are reviewed in Chapter 5. Briefly, it is never a rehabilitation provider’s job to challenge a person’s specific goals: “Charlie, I just don’t think you have what it takes to become an attorney.” Sometimes the rehabilitation provider may need to share information about a goal: “Charlie, you will need to get an undergraduate degree and then go through law school if you want to be an attorney.” But the rehabilitation team is then charged with helping Charlie take the steps toward achieving this vocational goal. Rehabilitation providers realize that mental health is not just the removal of symptoms and disabilities. Instead, quality of life is central. As defined in Chapter 5, quality of life is the degree to which people are satisfied with the various domains of living: work, income, health, independent living, and relationships. A quality of life with a sense of well-being is accomplished through a focus on strengths. A strengths-­focused rehabilitation program helps people avail themselves of their strengths in the pursuit of goals. It also helps people learn ways to add to their list of strengths. In line with a strengths-based focus is the concept of resilience, which is defined in the mental illness literature in two ways (Ayed, Toner, & Priebe, 2019). One definition frames resilience as a process of adjustment and adaptation to the experience of psychiatric disability through which individuals withstand, bounce back from, or grow from their experience with serious mental illness. This definition is consistent with the common description by people with psychiatric disabilities of recovery from the disabling effects of serious mental illness as a “journey” (Deegan, 1996; Drake & Whitley, 2014). Psychiatric rehabilitation practitioners are charged with supporting individuals with serious mental illnesses in this process. Another conceptualization of resilience is as a reservoir of individual and personal resources that they can tap to move forward in their recovery. This definition infers that resilience can be enhanced in psychiatric rehabilitation settings by leveraging existing personal and social resources, which can be identified through various assessment strategies (see Chapter 5). Resilience might be addressed following disasters that impact coping among people living with serious mental illness, such as the COVID-19 pandemic, using strategies such as short-term cognitive-­behavioral therapy and the provision of resources (Richards & Dixon, 2020). Another important population to be targeted using resilience interventions

3.  What Is Psychiatric Rehabilitation? 51 

INSTITUTIONAL EXAMPLE Thresholds Located alongside high-rise apartments and other residences in an affluent neighborhood of Chicago, the home base for Thresholds does not “look” like a psychiatric rehabilitation center. It appears to be a large residence, which it once was. When you walk inside, you may be struck by the apparent chaos of simultaneous diverse activities on every floor of the building. In the lobby, you step aside as a group of members (i.e., people with psychiatric disabilities) assemble for a mobile work crew to clean government buildings. In the basement, a coffee shop is open for business. On the first floor, a peer-led medication education group is meeting. Nurses from the local university are conducting routine physical examinations in another room. Adding to the swirl of activity on the first floor, the Mothers’ Group offers training and support to mothers with schizophrenia in caring for their preschoolers. On the second floor, some members are preparing the noonday meal, while the members’ council is planning the summer camping program. On the upper floors, workers hold individual counseling sessions. The Education program meets on the fourth floor, providing tutorial help for members preparing for their GED examinations. Elsewhere, the Community Scholars program helps members enroll in local community colleges. That evening, Thresholds is transformed into a drop-in center, with board games, food, and music. As you learn more about Thresholds, you discover that these impressions provide only a glimpse of the tip of the iceberg: They do not include the Thresholds Bridge assertive community treatment programs, the large network of housing interventions, or many other programs. Thresholds embodies the core principles of psychiatric rehabilitation, discussed below. For example, all of its programs have a focus on real-world issues (work, housing, income support), with attention to members’ personal goals and preferences. Interventions aim at both skills training (sometimes through formal classes, but more often through experiential learning) and environmental modification. Thresholds staff members work together on teams that provide the entire spectrum of psychiatric rehabilitation services, including mental health case management, vocational services, and residential services. All of the Thresholds programs aim at community integration, and their intention (especially that of the Thresholds Bridge programs) is to provide time-unlimited services, in recognition of the importance of continuity of services.

are those who are early on in their experience with symptoms of a serious mental illness. Services provided to this population are often referred to as early intervention or first-­ episode programs. Research suggests that the earlier psychiatric rehabilitation is received following the onset of symptoms, the more promising the recovery outcomes. A meta-­ analysis of the literature examining the effects of early intervention services compared with treatment as usual found superior effects of early intervention on treatment discontinuation, hospitalization, involvement in school or work, and symptom severity (Correll et al., 2018). Delivering interventions meant to foster resilience soon after the onset of symptoms may delay or prevent the transition to psychosis (Stafford, Jackson, Mayo-­ Wilson, Morrison, & Kendall, 2013). With the focus on hope, goals, and strengths, one might think that failures do not occur in rehabilitation. Failure, however, is a part of human life. Everyone better understands the bounds of existence through the experience of falling short. Unfortunately, out of concern about relapse—­recurring symptoms that might bring a person back into the psychiatric hospital—a rehabilitation provider might rob the person of the dignity to

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fail (Corrigan, 2011a; Mukherjee, 2015). People with psychiatric disabilities need to be granted the same opportunities, with the same potential for missing the mark, as everyone else.

Principles for Approaching the Community and Service System Success in the community rests on self-­determination (Corrigan, Angell, et al., 2012; Davidson, 2016; Piltch, 2016). People with disabilities have the final say about the goals they wish to seek, as well as the supports they might use to obtain them—­supports that include the array of rehabilitation services in their community. People often rely on the advice of family members and other important people in their lives. The prominence of family influence may change by culture; in Asian cultures, for example, the role of parents’ opinion is generally elevated over its role in mainstream U.S. culture (Lam, 2003). Family-­centered decision making, in which family members take on a greater role in treatment and rehabilitation decisions, may be appropriate for individuals whose culture places high value on family involvement (Corrigan & Lee, 2021). Still, persons with disabilities should make the final decisions on all aspects of their rehabilitation plans. Rehabilitation programs also rely on community integration. This means avoiding the use of stepwise approaches in which individuals first adjust to protected settings, such as sheltered workshops, segregated housing arrangements, and day treatment programs, as preparation for eventual full integration (Carling, 1995). As a result, rehabilitation programs follow the principle of “place first and then train.” This perspective is contrary to old-­school notions of training before placement (Corrigan, 2001). In the traditional philosophy, it was believed people should be trained on illness management skills in “safe” settings, before being placed in real-world settings with their potentially overwhelming demands. As a result, people might be sent to a sheltered workshop to learn work adjustment skills before being placed in part-time jobs. Research showed, however, that this kind of overly cautious approach to rehabilitation did not protect the persons from relapse. Instead, it frustrated people by placing them in therapeutic limbo instead of helping them dive into the work (or school or housing) setting where their goals would really be met. The principle of “place first and then train” means that people with disabilities are put into the work setting and then obtain the training and support to help them stay there. Success in following these principles relies on community support and modifications. Most everyone needs the support of family members, friends, and community in achieving their goals. People with psychiatric disabilities rightfully have the same expectations. Rehabilitation providers might be needed to help organize these supports. In addition, people with psychiatric disabilities are entitled to accommodations in their community to fully avail themselves of supports and opportunities, as outlined in the ADA (see Chapter 2 and the discussion later in this chapter). Hence the school system, for example, should modify admissions and other policies so that persons with these disabilities can make it successfully through community college. Reasonable accommodations are highlighted through the book, but especially in Chapter 11 on employment and education. Slightly different from the concept of community integration, and one more often used outside of the United States, is that of community inclusion (Salzer, 2021). Community inclusion goes a bit further than integration, as it emphasizes the value of recruiting, welcoming, and embracing individuals of diverse abilities into all spaces (work, school,



3.  What Is Psychiatric Rehabilitation? 53

living, social, and spiritual). The principle of community inclusion, if applied in the context of psychiatric rehabilitation services, should result in policies, programs, and practices that benefit people with mental illness and the community broadly. Furthermore, rehabilitation occurs in the real world, not in sheltered settings. This means that people with psychiatric disabilities are due the rightful opportunities of sameage peers—­including work, housing, health, and relationships—with similar accreditation where applicable (e.g., educational diplomas). This also means that these goals occur in real places (e.g., an actual legal office) in real ways (e.g., doing actual legal work). Rehabilitation is also inclusive. Old-­school notions of rehabilitation sought to protect people with disabilities from those who might harm them. Families, in particular, were often distanced from persons with mental illness because of beliefs that hostile or overinvolved parents caused or worsened mental illness. Today, everyone a person wants included in services is included: parents, spouse or partner, children, extended family members, and friends. People in authority roles may also be included: professors, employers, landlords, religious leaders, health care providers, or members of the criminal justice system. This is often a changing list, depending on the specific goals that guide the rehabilitation plan. In addition, rehabilitation programs offer continuity of services. Because psychiatric disabilities often involve chronic conditions, time-­limited interventions are generally ineffective. Maintaining continuity in relationships by providing timely and predictable support is a key element in successful psychiatric rehabilitation programs. The principle of continuity of services may seem to be contrary to self-­determination, especially for psychiatric rehabilitation programs such as drop-in centers and clubhouse programs, which stress the voluntary nature of membership. In such programs, one way this principle is expressed is through systematically reaching out to those who have stopped participating (Beard, Malamud, & Rossman, 1978). Information like that summarized in Figure 3.1 might suggest that a service plan occurs in separate boxes—that addressing vocational goals, for example, is a separate task, done at a separate time, by a separate provider or team of providers from the provider(s) addressing independent living goals. This assumption might suggest that there is an order to goals (e.g., that people should resolve substance use goals before going back to work). Good rehabilitation services are integrated. The rehabilitation team, led by the person, tackles all goals together in the order that makes the best sense for that person. Often, several goals are considered at once. Traditional mental health systems, by contrast, often undermine integrated programs. This is sometimes called siloed services: Vocational services are provided by one team, mental health services by a second, and substance abuse interventions by a third. People in these systems often feel like ping-pong balls, bouncing from office to office to get services. Three types of integration are especially important and are discussed more fully in subsequent chapters:

• Integrated vocational and mental health services (Chapter 11). One team addresses

all the employment (and educational) goals of people with psychiatric disabilities, while also helping them deal with these disabilities. • Integrated substance abuse and mental health services (Chapter 16). Once again, a single team helps people with mental illness deal with substance abuse concerns, while also managing the mental illness. • Integrated mental health and primary care services (Chapter 15). A third team helps people with psychiatric disabilities address physical health needs by assisting them in primary care clinics.

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Strategies Strategies are the tools that rehabilitation providers use to help people accomplish their goals. They are discrete behavioral activities by means of which providers engage people to help them move forward. Most important of these are basic listening skills, those sets of activities fundamental to any counseling or helping relationship. Contrary to what one might expect, some listening and communication techniques may actually undermine counseling. Thomas Gordon (1970) summarized many of these “roadblocks” in a list commonly taught to counseling students; a list based on Gordon’s recommendations is provided in Table 3.1. Often added to this list are actions like advice giving or problem solving. A counselor who gives advice is not listening to a person, and often jumping way ahead of them. Table 3.2 lists the fundamental listening skills. These are often divided into attending, following, and reflecting skills (Egan, 2013). Space limitations preclude a satisfactory review of roadblocks and listening skills here. Students of psychiatric rehabilitation should be involved in skills-based coursework where these principles and practices are mastered. Interpersonal problem-­solving skills constitute another form of basic listening, in which the rehabilitation provider helps the person understand problems that block goals, brainstorm solutions to problems, consider the costs and benefits of solutions, pick one solution and plan its implementation, and evaluate that solution after a brief time to determine its effectiveness (Dobson & Dozois, 2019). The provider may work with the person to adapt a solution further if evaluation suggests that it falls short. Interpersonal problem solving is discussed more fully in Chapter 7. Equally important are instrumental support and social support. Instrumental support helps the person solve problems that recur when they are living independently in the

TABLE 3.1.  Gordon’s Roadblocks to Communication Ordering, directing, commanding: Telling the person to do something; giving the person an order or command. “I don’t care what other people are doing; you have to go to the sheltered workshop!” “Stop complaining!” Moralizing, preaching—“shoulds” and “oughts”: Invoking vague outside authority as accepted truth. “You shouldn’t act like that.” “You ought to do . . . ” Teaching, lecturing, giving logical arguments: Trying to influence the person with facts, counterarguments, logic, information, or the provider’s own opinion. “Going to community college can be the most wonderful experience you’ll ever have.” “Let’s look at the facts about living independently on a fixed income.” Judging, criticizing, disagreeing, blaming: Making a negative judgment or evaluation of the person. “You’re not thinking clearly.” “That’s an immature point of view.” Withdrawing, distracting, sarcasm, humoring, diverting: Trying to get the person away from the problem, withdrawing from the problem, distracting the person, kidding the person out of it, or pushing the problem aside. “Come on—let’s talk about something more pleasant.” “We’ve all been through this before.” Note. Based on Gordon (1970).

3.  What Is Psychiatric Rehabilitation? 55 

TABLE 3.2.  Fundamental Listening Skills Attending skills A posture of involvement: The listener’s posture can let the speaker know that their message is being heard. Appropriate body motion: A listener who is too still may appear distant to the speaker. Simple motions of nodding or leaning forward can let the speaker know that the listener is paying attention. Eye contact: The listener should continue to make eye contact with the speaker while they talk, unless the eye contact is making the speaker uncomfortable. Nondistracting environment: A noisy or distracting environment can create a barrier between speaker and listener. The listener should try to limit the interruptions and talk in a space where the speaker can speak freely. Following skills Door openers: The listener should make sure not to start the conversation with a roadblock. Good door openers provide an invitation to talk followed by silence, giving the speaker a chance to talk. Minimal encouragers: Simple statements (e.g., “Right” or “Go on”), or a nod of the head, can let the speaker know that the listener is engaging with them. Infrequent questions: Questions can help direct the speaker, but not all questions are helpful. Asking a closed-ended question that can be answered with one or two words does not encourage conversation, whereas an open-ended question does. This type of question begins with a word like what, why, or how, encouraging the speaker to continue. Attentive silence: Being quiet, while showing the speaker that the listener is engaged, is one of the best ways to help. Eye contact and minimal encouragers can let the speaker know that the listener is paying attention, while letting the speaker do most of the talking. Reflecting skills This type of listening skill involves reflecting or returning the speaker’s messages, including both the obvious and potentially hidden messages. The obvious message is the exact meaning of what the person says, while the hidden message takes into account the mood and emotions of the speaker. Paraphrasing: Restating the core of the speaker’s message in the listener’s words. It is concise— concentrating on the content of what was said, and balancing the speaker’s and listener’s speaking styles. This focuses on the obvious message. Reflecting feelings: This centers on the hidden message of what the speaker is saying. By listening for feeling words and observing body language, the listener can hear the speaker’s feelings and echo them back to the speaker. Reflecting meanings: This involves tying the obvious and hidden messages together. By tying the speaker’s feelings to the content of their message, the listener can think about the overall meaning of what the speaker is saying. Summary reflections: By summarizing the flow of the conversation, the listener can reflect themes or common statements the speaker is repeating. Note. Based on Egan (2013).

community. Social support helps the person meet basic needs for affection and affiliation. Providing instrumental support may include discharge planning from the inpatient setting, establishing linkages with community programs, networking with these programs to confirm that linkages have occurred, ensuring that high-­quality community care is provided, and advocating when such care is not provided (Bachrach, 1989; Kanter, 1989). Social support includes being there when the person needs emotional assistance and providing this support unconditionally.

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Good examples of ongoing support have been described as longitudinal, cross-­ sectional, and accessible (Baker & Intagliata, 1992; Caragonne, 1981; Intagliata, 1982; Rapp, 1998; Rapp & Goscha, 2004; Test & Stein, 1978; Uijen, Schers, Schellevis, & van den Bosch, 2012). Longitudinal services begin at hospital discharge and continue as a person moves through various community programs. Longitudinal support does not end if the person experiences a relapse and is rehospitalized. Cross-­sectional support implies that providers will address the needs of persons with mental illness across all domains of need. Hence, providers must have a broad network of contacts available to meet the changing nature of these persons’ concerns. By being accessible, providers reach out to people and serve them at their homes, workplaces, or rehabilitation programs, rather than waiting for people to come to staff offices. Providers help people set their rehabilitation plans through shared decision making (SDM), which is a fairly well-­developed and evaluated approach to health care and other service options that combines three basic principles and strategies—­education, cost–­ benefit analyses, and support (Drake, Deegan, & Rapp, 2010). It has three corresponding components: 1.  Assist decision making by helping the person examine costs and benefits of various options. Namely, the person is encouraged to identify and make sense of the advantages and disadvantages of a specific service for specific problems (symptoms, disabilities, low quality of life) caused by the illness. 2. This kind of assessment is facilitated by information, so that the person better understands their illness, corresponding treatment, and other relevant parameters. The education process requires development of meaningful and user-­friendly information channels. These might include face-to-face classroom kinds of endeavors. Online technologies and social media have also moved into this arena; education may now be provided via interactive websites, YouTube, Facebook, Twitter, and various mobile health (mHealth) apps (Borzekowski et al., 2009; Naslund, Marsch, McHugo, & Bartels, 2015). 3.  SDM is fundamentally a social exchange between person and provider. Skills that enhance the qualities of this exchange may positively affect treatment decisions. This consideration has been prominently incorporated in the field of motivational interviewing, which suggests that SDM exchanges need to surpass some kind of actuarial process to include empathy, genuineness, and the promotion of self-­efficacy (Miller & Rose, 2010). SDM and motivational interviewing are reviewed more completely in Chapter 5. Goal setting is the set of practical activities providers use to help people identify and act on their personal aspirations (Anthony & Liberman, 1992; Bachrach, 1992; Mosher & Burti, 1992). Goal assessment ensures that the focus of treatment is driven by personal perceptions of important needs. Various methods have evolved to assess goals (Brewin & Wing, 1993; Marshall, Hogg, Gath, & Lockwood, 1995; Phelan, Link, Stueve, & Moore, 1995); typically, they combine open-ended questions about a person’s needs with Likert scale ratings about the importance of these needs. These methods may seem to frame goal identification as a series of yes–no determinations (e.g., “Yes, obtaining supported housing is important to me, and I’d like some assistance in this area,” or “No, I don’t want to change my work experiences now”). Rather than viewing a specific goal as a categorical decision, a provider may obtain a more comprehensive picture by considering the profile of factors that motivate and discourage a specific decision (Corrigan, McCracken, & Holmes, 2001). For example, what are the advantages

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and disadvantages of changing the current work setting? This kind of assessment helps the person identify specific barriers to achieving goals and personal benefits related to that pursuit. Skills training helps adults who lack social and coping skills to learn adaptive behaviors so they can bolster their support networks and deal more effectively with life’s demands. Skills training is a rehabilitation strategy based on social learning theory that comprises four steps (Liberman, DeRisi, & Mueser, 1989; Morrison & Bellack, 1984): 1. Skills are briefly introduced to participants, so that they can gain a conceptual understanding of what they are about to learn. 2. Actors model the skills so that participants can learn them vicariously. 3. Participants are encouraged to behaviorally rehearse the newly learned skills during role plays; for example, participants learning basic conversation skills may be instructed to role-play a conversation about local sports teams with an acquaintance on a bus. 4. Social and material reinforcers are distributed for successful participation in the role play. These four activities have been used to help participants learn a wide range of social, selfcare, and coping skills. Many of the social and coping skills learned in training programs frequently do not generalize outside the treatment center where skills training occurred (Corrigan & Basit, 1997). For example, participants who show marked improvement in social skills at a work program may seem relatively unchanged at home. Critics believe that this is a fundamental flaw in skills training programs, because the positive effects of these programs are not carried into other settings. Proponents counter that this critique actually represents a misunderstanding of the process of generalization. Rather than being a naturally occurring event, generalization is a goal that needs to be actively targeted in the treatment program. Accordingly, clinical investigators have developed several transfer training strategies that foster generalization. One of the best ways to generalize newly learned behaviors to situations outside the training milieu is to assign homework (Falloon, Lindley, McDonald, & Marks, 1977; McFall, 1982). Trainers inform individuals that they are to practice newly learned skills at important venues outside the treatment setting: at home, at their part-time jobs, at their places of worship, or when visiting friends. Homework directs a skills training participant to rehearse the new skills in a setting with different social demands. Family members, friends, coworkers, residential staff members, and others with whom the participant regularly interacts are essential resources for generalizing skills. These persons need to be actively included in the skills training plan; family education and support strategies are discussed more fully later in the section “Eye Movement Desensitization and Reprocessing.” Persons with severe mental illnesses are often hampered by cognitive deficits, including problems with attention, memory, decision making, and expression (Corrigan & Yudofsky, 1996). Social and coping skills may not be learned or generalized, because participants have difficulty recognizing similarities and differences between the training setting and other important situations. Cognitive rehabilitation and therapy strategies try to help participants resolve the various information-­processing deficits that interfere with the acquisition and performance of important skills (Liberman & Green, 1992; Hogarty & Flesher, 1992).

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Researchers have attempted to improve participants’ deficits in attention, memory, and conceptual flexibility. Various reinforcement and punishment contingencies have been shown to significantly improve participants’ attention to test stimuli (Karras, 1968; Meiselman, 1973; Rosenbaum, Mackavey, & Grisell, 1957). Semantic encoding, in which subjects are instructed to remember word lists in terms of important dimensions, has significantly improved the subsequent recall of these words. Monetary reinforcers and rule learning have improved participants’ ability to manipulate concepts flexibly (Bellack, Mueser, Morrison, Tierney, & Podell, 1990; Green, Ganzell, Satz, & Vaclav, 1990). For example, participants in a card-­sorting task were able to sort these cards more accurately when they were paid for correct sorts and provided with a rule to guide the sort (e.g., sorting by color). Unfortunately, most of these studies on cognitive rehabilitation have been conducted in laboratory settings, so the validity of their findings is questionable (Corrigan & Storzbach, 1993). What does paying attention to numbers flashing on a computer screen have to do with an individual’s ability to attend to a supervisor’s instructions about loading a truck? More recently, researchers have enhanced the validity of cognitive rehabilitation by trying to diminish the impact of cognitive deficits on learning psychosocial skills. An attention-­focusing procedure has been shown to augment the acquisition and generalization of basic conversation skills (Liberman, Mueser, & Wallace, 1986; Massel, Corrigan, Liberman, & Milan, 1991; Wong & Woolsey, 1989). This protocol involves repetition of attentional prompts over the course of learning a new skill. Researchers have also applied many of the principles and techniques of cognitive-­behavioral therapy to ideas that trouble people with serious mental illness (Beck & Rector, 2000; Gould, Mueser, Bolton, Mays, & Goff, 2001; Turkington & Kingdon, 2000). These kinds of approaches use collaborative empiricism; that is, a person and counselor jointly determine how a specific thought hurts the person and develop counters to these thoughts that are personally effective. Mindfulness has been incorporated into cognitive therapy to enhance its effects. Although largely emerging from Buddhism, mindfulness has recently been adapted for Western therapies. Mindfulness is intentional, accepting, and nonjudgmental focus of a person’s attention on the emotions, thoughts, and sensations occurring in the present moment (Kabat-Zinn, 2007). It has been included in recently developed psychotherapies such as dialectical behavior therapy (DBT; Linehan, 2013), acceptance and commitment therapy (Hayes & Lillis, 2014), and eye movement desensitization and reprocessing (EMDR; Oren & Solomon, 2012). DBT (https://dialecticalbehaviortherapy.com) focuses on teaching people with depression, anxiety, BPDs, addictions, eating disorders, and PTSD problem-­solving strategies. Strategies fall under four core skills sets, including mindfulness, distress tolerance, emotion regulation, and interpersonal/communication skills. Acceptance and commitment therapy targets six core processes of change supporting psychological flexibility to decrease suffering and improve well-being, and has been found to be efficacious for a range of conditions, including anxiety, depression, substance use, pain, and transdiagnostic groups (Gloster, Walder, Levin, Twohig, & Karekla, 2020). The six core processes targeted by acceptance and commitment therapy include (1) acceptance (acknowledging and accepting the full range of emotions), (2) cognitive diffusion (changing the way you react to distressing emotions [suspending judgment]), (3) being present (being mindful of thoughts and feelings in the present moment without judgment), (4) self-as-­context (viewing one’s identity as more than one’s thoughts and feelings), (5) values (choosing values in different domains and striving to live according to these values, as opposed to acting



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in order to avoid distress), and (6) committed action (taking concrete steps to incorporate changes that align with values). EMDR (www.emdr.com) is a psychotherapy treatment that targets emotional distress and traumatic memories (Shapiro, 1989a, 1989b). During EMDR, the clinician follows a protocol that requires the client to attend to emotionally distressing memories in sequential doses, while focusing on an external stimulus (i.e., directed lateral eye movements, hand tapping, audio stimulation) (Shapiro, 1991). Cuijpers, Veen, Sijbrandij, Yoder, and Cristea (2020) conducted a meta-­analysis of studies examining the effectiveness of EMDR for PTSD and other mental health conditions and found that EMDR may be effective for PTSD in the short term, but problems with the quality of existing studies do not allow for drawing definite conclusions about EMDR’s effectiveness. Sepehry, Lam, Sheppard, Guirguis-­Younger, and Maglio (2021), who conducted another meta-­analysis examining the effectiveness of EMDR for depression, concluded that it is an effective intervention for depression but similarly pointed out problems with the quality of existing research. More and higher-­quality research is needed to determine whether EMDR may be an effective component of psychiatric rehabilitation interventions. Schizophrenia and other serious mental illnesses have an adverse impact on not only an individual diagnosed with such a disorder but also their family. Parents, siblings, and other family members are typically distressed by the person’s sometimes bizarre and asocial behavior; anxious about increased financial burdens due to prolonged treatment; uncertain about the person’s and their own future plans; and isolated from their own social supports due to caregiving responsibilities, stigma, and social embarrassment (Creer & Wing, 1974). Moreover, increased family stress may be a factor contributing to further exacerbations of the person’s symptoms (Imber-Mintz, Liberman, Miklowitz, & Mintz, 1987). People who return to families that display criticism or hostility seem to relapse three to four times more often than those whose families are low in expressed emotion (Brown, Birley, & Wing, 1972; Leff & Vaughn, 1985; Vaughn & Leff, 1976; Vaughn et al., 1982; Vaughn, Snyder, Jones, Freeman, & Falloon, 1984). Family education and support are aimed at helping a family manage the burden of a member’s severe mental illness (Mueser & Glynn, 1999). Educational approaches to family therapy combine three interventions: information giving, communication skills training, and problem-­solving training. During the first sessions, the family is provided information about the nature, course, and treatment of the person’s mental illness. Family members learn about symptoms and their impact. This lesson can be made especially poignant by asking people to join in the educational process and to discuss personal experiences with symptoms. Effective treatments for the illness are also reviewed. Support shared among family members is also beneficial to those involved. A multiple-­family group (MFG) helps participating family members to extend their social network; the MFG is believed to absorb anxiety and stress generated by psychotic symptoms (Anderson, Hogarty, Bayer, & Needleman, 1984; Pattison, Llamas, & Hurd, 1979). Controlled research suggests that persons with severe mental illnesses who participate with family members in MFGs show significant reductions in symptoms and fewer rehospitalization days (McFarlane et al., 1996). Family approaches are more thoroughly discussed in Chapter 12. Pursuing goals and overcoming symptoms and disabilities are difficult; people often relapse. Relapse prevention is a cognitive-­behavioral intervention in which rehabilitation providers help people plan for and control relapses during periods when they are relatively strong. This intervention was originally developed to help people with the frequent slips common during attempts to control alcohol and other drug use (Larimer,

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Palmer, & Marlatt, 1999). Relapse is defined here as using alcohol or drugs beyond a stated goal (e.g., “I slipped and got drunk over the weekend”). Relapse prevention has also been applied to mental health issues (Segal, Pearson, & Thase, 2003). In this case, relapse might be experienced as being overwhelmed again by anxiety, depression, or voices. Relapse prevention helps people define slips, identify high-risk situations where slips might occur, plan ways to avoid these high-risk situations, and practice coping skills when relapses occur. It is more fully described in Chapters 7 and 16, since it has largely been studied as a strategy for drug and alcohol abuse. The goal of relapse prevention may seem to be total abstinence, especially in terms of drug and alcohol abuse. People who abuse substances should stop. People do not always choose abstinence as a goal, however; for these persons, the pros of giving up a substance do not outweigh the cons. Harm reduction is a strategy for helping people learn to use drugs and alcohol safely (Marlatt, Larimer, & Witkiewitz, 2012). Among the greatest risks of heroin and other intravenous drug use are the infectious diseases (e.g., HIV/AIDS and hepatitis) that occur when a person is using a needle that someone else used. Safe needle exchange programs provide such a person with clean needles, which they should discard after single use. Programs that widely disseminate condoms have also been used to reduce the harm of HIV/AIDS (Hilton, Thompson, Moore-­Dempsey, & Janzen, 2001). Rehabilitation providers doing harm reduction suspend moral judgment about the behavior, instead using listening and problem-­solving skills in an atmosphere of acceptance. A trauma history is very common among people with psychiatric disabilities (Copeland et al., 2018; Sara & Lappin, 2017), and ongoing experiences with trauma can thwart recovery efforts. The trauma-­informed care (TIC) framework put forth by SAMHSA (Huang et al., 2014) highlights the need to listen carefully to individuals receiving psychiatric rehabilitation services to identify and address sources of trauma in order to promote recovery. SAMHSA’s definition of trauma states, “Individual trauma results from an event, series of events, or set of circumstances that are experienced by an individual as physically or emotionally harmful or life threatening and that has lasting adverse effects on the individual’s functioning and mental, physical, social, emotional, or spiritual wellbeing.” It is important to recognize that, as discussed in Chapter 2, sources of trauma might include stigma, including discrimination within the psychiatric services system itself, and systems-level work is necessary to ensure that psychiatric rehabilitation services are addressing rather than inflicting trauma. SAMHSA outlines six key principles of a trauma-­informed approach to behavioral health care: (1) Safety; (2) Trustworthiness and Transparency; (3) Peer Support; (4) Collaboration and Mutuality; (5) Empowerment, Voice, and Choice; and (6) Cultural, Historical, and Gender Issues. Any psychiatric rehabilitation intervention can, and should, be approached in a trauma-­informed manner, considering these six key principles. Sweeney and colleagues (Sweeney, Filson, Kennedy, Collinson, & Gillard, 2018) provide an excellent overview of the definitions of trauma and TIC, the origins of TIC, and an overview of trauma-­informed approaches to care. Isobel and colleagues (2021) interviewed individuals using mental health services and providers to obtain their perspectives on what a trauma-­informed mental health service might look like. Service users and caregivers identified that TIC requires increased awareness of trauma among mental health staff (indicating a need for staff trainings in identifying signs of trauma and how to explore trauma histories), opportunities to collaborate in care, active efforts by services to create environments of trust and safety, cultural competence, consistency, and continuity of care. Regarding staff training in TIC, Nation and colleagues (2022) conducted a mixed-­methods evaluation of implementing introductory training on TIC into mental health rehabilitation services. At baseline, staff

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members were surveyed regarding their attitudes toward TIC, participation in training was monitored, and interviews were conducted with team leaders to assess their views on the implementation of TIC. Training completion varied widely across the teams included in this implementation study, ranging from 4.8 to 78%. The team leader interviews revealed four themes around implementation, including the need to respect an individual’s life journey and avoid retraumatization; the importance of considering the context of implementing TIC training; TIC being an essential component of mental health care; and acknowledging the fact that to support the workforce best, an organization should be cognizant that staff may also have trauma histories. An additional intervention strategy to consider when providing psychiatric rehabilitation services is utilizing technology. Naslund, Aschbrenner, and Bartels (2016) conducted a study examining how people with serious mental illnesses use smartphones, mobile apps, and social media. They found that 93% of the 70 individuals living with psychiatric disabilities who participated in their study owned a cell phone (50% owned a smartphone at the time of the study), 78% used text messaging, and 71% used social media such as Facebook. A plethora of mobile health applications have emerged in the last couple of decades. Naslund et al. (2015) conducted a systematic review of the literature on mobile and e-­health interventions for serious mental illness, identifying 46 studies of such interventions across four countries. They classified interventions into four categories: (1) illness self-­management and relapse prevention; (2) promoting adherence to medications and/or treatment; (3) psychoeducation, supporting recovery, and promoting health and wellness; and (4) symptom monitoring. They found in their review of the literature that these interventions were consistently highly feasible and acceptable. They also found that although clinical outcomes varied, these studies offered insight into the potential effectiveness of utilizing technology to support people with serious mental illnesses in their recovery.

Settings Service providers operating rehabilitation programs select interventions that help persons attain their rehabilitation goals within specific milieus. In other words, the particular forms of these goals and interventions are influenced by the settings in which they are provided. For example, goals of inclusion, empowerment, and quality of life in residential venues appear as concerns about setting up an independent and personally satisfying household. The goals of opportunity and recovery in vocational settings are manifested as obtaining and maintaining a competitive and meaningful job. The large number of settings in which rehabilitation is provided can be divided into three groups: residential, vocational, and day activity/recreational programs. The ways in which the practice of rehabilitation is affected by these settings are reviewed in the next few pages.

Residential Venues Persons with serious mental illnesses may address their residential needs in a variety of settings. Psychiatric hospitals continue to provide services for many persons with severe mental illnesses (Corrigan, McCracken, Kommana, Edwards, & Simpatico, 1996; Fisher, Geller, & Pandiani, 2009; Wik, Hollen, & Fisher, 2020; Perera, 2020). Hospitals primarily serve to treat acute exacerbations of psychiatric symptoms. Inpatients are typically released to their community as soon as symptoms related to dangerousness have sufficiently remitted. Rehabilitation may seem to have little part in a symptom-­oriented

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inpatient program; however, rehabilitation goals are still important, even in a fairly restrictive environment such as a psychiatric hospital. Several rehabilitation interventions serve these goals. Inpatients benefit from the social support that helps them challenge any sense of shame they might feel about being hospitalized. Inpatients also need instrumental support to set up aftercare services required after discharge. An inpatient stay provides an excellent opportunity to learn and practice coping strategies to help a person avoid future symptom flare-ups. Residential programs in the community vary in the amount of supervision and staff intrusiveness they involve. Inpatients may be discharged to halfway houses, where 24-hour services are provided by nursing staff. These kinds of programs can be fairly intrusive, with service providers prompting residents to take their medications, complete their morning routines, and catch public transportation for the vocational program. The least intrusive residential programs have service providers who make regular visits to persons’ apartments. Stein and Test’s (1980; Stein, 1992) research on assertive community treatment showed that many persons with severe mental illnesses could live successfully in their own homes when they received the regular support of case managers. Therefore, rehabilitation providers who work in assertive community treatment may provide social and instrumental support, teach social and coping skills, or target appropriate cognitive and emotional deficits. Research on assertive community treatment suggests that more restrictive residential settings are not needed when a person has access to support and other rehabilitation services (Bond et al., 1990; Mueser, Bond, Drake, & Resnick, 1998). The optimal place for meeting residential goals is in the person’s own home.

Vocational Programs Many rehabilitation goals are best served by addressing a person’s vocational ambitions. Persons who work at jobs that meet their vocational needs are likely to feel included in their communities and to report a high quality of life (Anthony & Jansen, 1984; Baron & Salzer, 2000). Although sheltered workshops have been providing work-­related services for several decades, most providers, advocates, and researchers recommend transitional or supported employment as the best way to help people reach vocational goals. Transitional employment is a work-­hardening program that provides people with temporary jobs (Macias, Kinney, & Rodican, 1995). Rehabilitation counselors oversee multiple employment sites, provide job coaching, and locate competitive employment. The shortterm community positions are under the direct supervision of a rehabilitation agency. This setup allows people to adjust to the demands of working in a safe and low-­stress environment. People work at a job site for a few months and then transfer to another position. It is generally expected that people will rotate through two or three jobs before they are ready for competitive employment. Supported employment is defined by six empirically validated principles (Bond, 1998): 1.  Competitive employment is the goal. People with psychiatric disabilities have a better quality of life in real jobs in integrated settings with at least minimum wage than people with such disabilities who participate in sheltered work programs (Gervey & Bedell, 1994; Drake, Bond, & Becker, 2012; Modini et al., 2016). 2.  Rapid job search is essential. Contrary to the conservative notion that placing a person in a job must be a slow and stepwise process, research suggests that competitive

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employment is best achieved through prompt and direct assistance in identifying appropriate jobs and placing persons in these positions (Bond, 1992; Bond & Dincin, 1986; Modini et al., 2016). 3.  Rehabilitation and mental health support services must be integrated. Unfortunately, mental health and vocational rehabilitation services are typically provided by separate teams. Research suggests that the integration of these two service paradigms within a single team yields the best outcomes (Chandler, Hu, Meisel, McGowen, & Madison, 1997; Drake et al., 2012; Drake, McHugo, Becker, Anthony, & Clark, 1996; McFarlane et al., 1996; Test, Allness, & Knoedler, 1995). 4.  Job placement must be guided by people’s preferences. Research suggests that most people with psychiatric disabilities participating in supported employment have job preferences (Becker, Drake, Farabaugh, & Bond, 1996) and are more satisfied with work when placement matches their preferences (Becker et al., 1996; Gervey & Kowal, 1994). Key to facilitating job preference is a job developer, a service provider who solicits the private sector for a wide range of employment positions. Public and structural stigma about mental illness may undermine an employer’s willingness to hire a person with a psychiatric disability, however (see Chapter 2), so efforts to overcome these types of stigma must be made. 5.  Assessment must be continual and comprehensive. Rather than focusing on assessment solely at admission, information must continually be obtained to determine the impact of supported employment and ways it should be adjusted to meet the ever-­ changing needs of individual participants (Bond, 1998). 6.  Support must be time-­unlimited. Health care systems often define intervention as a time-­limited enterprise. However, evidence suggests that employment rates may be maintained or even increased over time if intensive support continues over the long term (Chandler et al., 1997; Cook & Razzano, 1992; McHugo, Drake, & Becker, 1998). Some persons aspire to educational goals before pursuing vocational ambitions (Unger, 1993; Cook & Solomon, 1993). People with disabilities may strive to achieve their educational goals in local high schools, community colleges, 4-year universities, or graduate schools. Supported education offers the same combination of assistance and real-world experiences as provided in supported employment. Completing a degree program not only provides a person with better opportunities to get hired into the competitive job market, but it also boosts the individual’s sense of self-­esteem and accomplishment. Supported employment and education are discussed more fully in Chapter 11.

Activity and Recreation Some persons are either not ready for, or prefer not to pursue, work. They may be overwhelmed by psychotic or other symptoms, or may lack the social and coping skills they need to meet the demands of competitive work. These people need alternative sources of support and rehabilitation during the day. Rehabilitation settings that are not directly concerned with work and residence, and that are meant to be temporary for those who are especially overwhelmed by symptoms, are defined in this book as day treatment or partial hospitalization. These programs typically mix skills training (as described earlier) with social support. Some programs may address special populations, such as persons with severe mental illnesses who abuse alcohol and other drugs, or persons with

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BPD. Drake and colleagues (1994; Drake, Becker, Biesanz, Wyzik, & Torrey, 1996) have argued that most of the interventions offered for persons in day treatment programs can be provided effectively for the same persons in supported employment programs. Day treatment strategies that address symptoms and social deficits can be combined with strategies common to supported employment programs. According to this view, day treatment is not needed in the continuum of care. Instead, persons can be linked directly to employment programs upon discharge from hospitals. Psychosocial clubhouses provide an alternative milieu for day rehabilitation. Clubhouses, like Fountain House in New York City and Thresholds in Chicago, were developed out of people’s dissatisfaction with professionally led treatment programs (Beard, Propst, & Malamud, 1982; Dincin, 1995b). Under this approach, people and providers have equal status as members of the clubhouse, to further serve goals of empowerment and recovery. Clubhouses are primarily group-­oriented; members decide to participate in various work units that determine short-term goals for the day (e.g., to clean the meeting room, to plan a holiday party, or to determine the agenda for a substance abuse group). A systematic review of the research on the clubhouse model of psychosocial rehabilitation for people with mental illness found that the clubhouse model is efficacious for promoting employment, reducing hospitalizations, and improving quality of life among people with psychiatric disabilities (McKay, Nugent, Johnsen, Eaton, & Lidz, 2018). Still another alternative to day programs is self-help programs, developed and operated solely by and for persons with severe mental illnesses. One example of a self-help program is the National Alliance on Mental Illness’s (NAMI’s) Peer-to-Peer Program (Kosyluk et al., 2023). This group program comprises eight meeting sessions, co-­facilitated by people living with mental health conditions, during which participants offer one another mutual support. Knight (2006) summarized the existing literature on self-help groups for people with serious mental illnesses, reporting that self-help groups consistently show reduced symptoms and substance abuse over time; concomitant reductions in crises, hospitalizations, and use of services; improved social competence and social networks; and increased healthy behaviors and perceptions of well-being.

Roles The final element in our model is roles—the formal and informal positions assumed by different groups of stakeholders in the realization of psychiatric rehabilitation. As is true for other structures in this chapter’s model, the viewpoints of various stakeholders can cause psychiatric rehabilitation to change shape significantly. The central role or position in the individualized rehabilitation program is that of the person themself. The person has the most responsibility for deciding on the goals of service, as well as the venues in which services occur. Also important in terms of rehabilitation programming is the person’s own support system. Family members (parents, siblings, spouse/partner, and/ or children) should all be active participants in the rehabilitation plan when the person requests such assistance, as should other supportive individuals the person may identify. The third important group in this equation is the team of rehabilitation providers. The various roles that describe providers of psychiatric rehabilitation are both multidisciplinary and adisciplinary (Corrigan & McCracken, 1997). Multidisciplinary means that members of the rehabilitation team come from a variety of professional backgrounds: rehabilitation counseling, psychiatry, social work, clinical psychology, and nursing. Added to this group are paraprofessionals—people without bachelor’s degree training who occupy many of the frontline positions central to psychiatric rehabilitation.

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The wide variety of skills and expertise captured by a diversity of disciplines furnishes the rehabilitation team with many talents on which to draw. At the same time, however, rehabilitation providers are adisciplinary; that is, they do not permit the specialization of their individual disciplines to suggest that some tasks are uniquely within their purview while the rest of the interventions are somebody else’s work. For the most part, all of the rehabilitation tasks outlined in this chapter are the responsibility of all providers. The only exception is the prescription of antipsychotic medication. Although licensed physicians have the statutory responsibility for prescribing medications, all providers have a central role in symptom monitoring and medication administration. People who are or were clients of rehabilitation services are excellent resources for other people and therefore may make good rehabilitation providers. Researchers have examined the success of peer providers who have been hired to provide social and instrumental support to peers. Peers, in this context, are individuals who have consumed mental health services for a severe mental illness and now provide them to other such individuals. One type of peer support that has been professionalized is the Certified Peer Specialist. Organizations now exist that train and certify individuals with lived experience as Certified Peer Specialists, and these specialists work in a variety of settings and in a variety of roles to support recovery. Evidence of the effectiveness of peers in psychiatric rehabilitation is mixed (Chinman et al., 2014; Lloyd-Evans et al., 2014; Pitt et al., 2013), with some studies finding positive effects on recovery and hospitalizations, and quality of life, and others finding no effect of peer support. A review by Bellamy, Schmutte, and Davidson (2017) found that peer support services are generally equally effective as services provided by non-peer paraprofessional providers for improving clinical outcomes, and perhaps more effective for other recovery-­oriented outcomes (e.g., hope, empowerment, and quality of life). Additional and more rigorous research is needed to determine whether peer support services improve psychiatric rehabilitation outcomes.

EVIDENCE-BASED PRACTICE As we have emphasized in this chapter, the psychiatric rehabilitation field includes a panoply of approaches, many of them adapted from existing program models or invented de novo by program leaders. Sadly, probably more often than not, programs have been shaped by the funding streams that dictate how long services are offered, with whom, and when (Riggs, 1996; Clark, 1998). A great many of the influences on psychiatric rehabilitation practice have nothing to do with knowledge about what works. Fortunately, over the past four decades, we have witnessed amazing strides in the development of effective service models for people with psychiatric disabilities. Yet even with this accumulation of research evidence, the psychiatric rehabilitation field has espoused a pluralistic philosophy, with a multiplicity of approaches considered “best practices” (Hughes & Weinstein, 1997a). In the 1990s, a consensus started to emerge that some practices had achieved a sufficient critical mass of evidence to warrant their designation as evidence-based practices (EBPs), defined as “interventions for which there is consistent scientific evidence that they improve client outcome” (Drake et al., 2001, p.  180). But what exactly qualifies as “sufficient scientific evidence”? The best evidence comes from carefully controlled studies in which the rehabilitation intervention of interest is compared to another strategy (e.g., intensive care coordination is compared to office-based interventions). The concepts and measures that represent evidence must be well specified (e.g., how does intensive care coordination affect the amount of time a

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person stays in the psychiatric hospital?). Finally, these studies are especially compelling when participants are randomly assigned to the intervention group or the comparison group. Interventions described in this test are supported by evidence from multiple, separate studies; the body of work is often summarized in single narrative reviews of several studies (a systematic review). A meta- ­analysis is a statistical review of several studies. Mueser, Drake, and Bond (1997) identified five practices with the most compelling evidence at that time. In 1998, based on systematic literature reviews and expert surveys, the Schizophrenia Patient Outcomes Research Team (PORT) issued an influential report with 35 recommendations for psychopharmacological and psychosocial interventions for individuals with schizophrenia (Lehman, Steinwachs, & PORT Co-­I nvestigators, 1998a). Paired with this report was a study of usual practice showing abysmally low rates of congruence with these recommendations (Lehman, Steinwachs, & PORT Co-­I nvestigators, 1998b). An update of the PORT recommendations was issued in 2004 (Lehman et al., 2004). Other surveys have similarly and repeatedly shown little consistency between PORT recommendations and services that consumers actually receive (West et al., 2005). Also in 1998, the Robert Wood Johnson Foundation sponsored a national consensus panel of mental health services researchers, consumers, family advocates, clinicians, and administrators, who identified six evidence-based practices for individuals with serious mental illness (Drake et al., 2001): (1) supported employment, (2) assertive community treatment, (3) illness management and recovery, (4) family psychoeducation, (5) integrated dual-­disorders treatment, and (6) medication management according to protocol. Supported employment and assertive community treatment were briefly described earlier; all six EBPs are described in detail in later chapters. EBPs are well-­defined according to a set of operationally defined principles and therefore can be, and have been, replicated faithfully in diverse settings. Accordingly, fidelity scales, which are measures that assess the degree to which a particular program meets the standards of a program model (Bond, Evans, Salyers, Williams, & Kim, 2000), have been developed for each of the six practices listed. In 1999, the National Evidence-Based Practices Project was launched to address the fact that dissemination of such practices was hampered by the lack of comprehensive, easily accessible information on their implementation (Drake et al., 2000; Mueser, Torrey, Lynde, Singer, & Drake, 2003). In the first phase of this project, teams of researchers, practitioners, and consumers created implementation resource kits for each of the six EBPs (Torrey et al., 2001). These kits comprise materials to facilitate practice implementation, such as workbooks, key research articles, fidelity scales, and introductory and instructional videos. Accompanying these resource kits was a training–­consultation model that included the following elements: (1) an implementation steering committee composed of key stakeholders (e.g., agency administrators, program leaders, family members, and consumers) who would guide the process; (2) introductory presentations intended to build enthusiasm; (3) skills training for practitioners; (4) systematic assessment of model fidelity; (5) ongoing consultation; and (6) measurement of key consumer outcomes (Torrey, Finnerty, Evans, & Wyzik, 2003). Torrey, Bond, McHugo, and Swain (2012) conducted a study examining the implementation of EBPs across eight states at 53 different sites. The most important findings of this work correlated barriers and facilitators of implementation with implementation success (fidelity to the EBPs). All sites faced implementation barriers, which varied by EBP, yet there was no evidence that the number or type of implementation barriers correlated with implementation success. An important finding of this work was that active and visible leadership strongly influences successful implementation. Though correlated with implementation success, positive attitudes toward and knowledge of EBPs (believing

3.  What Is Psychiatric Rehabilitation? 67 

in the practice and wanting to offer it) are not enough. Active leadership is required to successfully implement EBPs in psychiatric rehabilitation. Active leadership strategies include redesigning workflows and structures to support EBP practice. This may mean reworking documentation, policies, meeting structures, and support staff to enhance EBP implementation. Another finding of this implementation study was that workforce development investment (i.e., training of staff in EBPs) was negatively related to implementation success. Training in EBPs is not enough to ensure successful implementation; it must be supported by active leadership.

COMMUNITY-BASED PARTICIPATORY RESEARCH Community-based participatory research (CBPR) is an approach to science whose practitioners believe that research on any group can only be done validly when professional researchers partner with that group (in this case, people with psychiatric disabilities). As partners, coinvestigators with lived experience share leadership in all elements of research design and implementation: defining research questions and subsequent hypotheses; developing interventions meant to reflect these hypotheses; describing measures and designs that will test interventions; conducting statistical analyses to make sense of data collected according to these designs; and interpreting findings in ways that will lead to recommendations with public health significance. Coinvestigators have especially noticeable roles “going into” and “coming out” of discrete research projects (Hatton, Kleffel, Bennett, & Gaffrey, 2001). At startup (“going into” a project), people with lived experience contribute their special insights to forming the key research questions and corresponding hypotheses. This groundwork is central to subsequent design and measurement decisions. The end of a project (“coming out”) is when information from the research is used to influence the public health arena. Typically, people with lived experience are the advocates on the team with the enduring interest and motivation to take what is found and change the community. Thus, CBPR is essential to understanding and resolving health care disparities due to homelessness, ethnicity, and mental illness (Wallerstein & Duran, 2008). CBPR with people with serious mental illnesses might seem to pose significant barriers. Might the deficits often accompanying such illnesses undermine the CBPR process? For example, do the cognitive dysfunctions or interpersonal difficulties experienced by some people with serious mental illnesses undermine participation in the partnership process? Recent work evaluating the CBPR process with people with psychiatric disabilities demonstrates that CBPR is possible and beneficial for this group and highlights barriers (e.g., overcoming power differentials and the risk of tokenism) and facilitators (e.g., providing reasonable accommodations for full and equitable participation) for engaging in CBPR to address health disparities for individuals with psychiatric disabilities (Sheehan, Nieweglowski, & Sun, 2021). Research programs on rehabilitation need to include people with lived experience as active partners.

POLICY AND LAW Rehabilitation providers can help people with disabilities achieve their life goals by working to change the community, too. Policy and law play a major role in this effort. Two pieces of legislation are highlighted here: the ADA and the ACA.

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The Americans with Disabilities Act The ADA sought to eliminate discrimination in five areas: employment, transportation, telecommunication, public accommodation, and the business of local and state government. Its application in the workplace has important ramifications for people with mental illness. The ADA prohibits discrimination in all phases of employment, including the hiring process. It provides protection to “qualified individuals with disabilities”; that is, individuals with disabilities are qualified to perform the “essential functions” of an employment position. If an individual with a disability requires “reasonable accommodation” to perform the work, then employers covered under the law are required to make this accommodation—­provided that it does not cause “undue hardship,” defined as an “action requiring significant difficulty or expense for the business” determined on the basis of factors such as the cost of the accommodation and the employer’s financial resources. Examples of psychiatric impairments requiring accommodation include difficulties in concentrating, dealing with stress, and interacting with other people. The ADA also makes it illegal during the preemployment process to ask questions about the nature or severity of a disability. For example, an employer cannot ask job applicants about their psychiatric histories (Mancuso, 1995). The ADA had a central role in a court case that some mental health advocates believe has important implications for psychiatric rehabilitation. The case of Olmstead v. L. C. (1999) was a lawsuit filed on behalf of two women with intellectual and psychiatric disabilities who were inpatients in a state psychiatric hospital in Georgia. Although hospital staff members all agreed that the women were ready for discharge, the two remained hospitalized because no appropriate community placements were available. In 1999, the U.S. Supreme Court considered the case, which involved interpreting the following regulation concerning enforcement of the ADA: “A public entity shall administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities” (28 C.F.R. § 35.130(d)). The Court ruled that the unnecessary segregation of individuals with disabilities in institutions may constitute discrimination based on these disabilities. This decision has been interpreted as requiring the community placement of institutional residents when a state’s own treating professionals have recommended such placement. In addition to laws prohibiting discrimination in the workplace based on disability, discrimination in housing is also prohibited by federal law. Discrimination in housing is covered by the Fair Housing Act (Title VIII of the Civil Rights Act of 1968), which prohibits discrimination in the sale, rental, and financing of dwellings, based on a range of characteristics including disability. Finally, the Protection and Advocacy for Mentally Ill Individuals (now Individuals with Mental Illness) Act of 1986 created an independent office in each state to investigate incidents of abuse and neglect of individuals with mental illness. Protection and Advocacy offices investigate violations of individual rights in community housing, such as board and care facilities, as well as violations in state psychiatric hospitals.

The Affordable Care Act The ACA is often viewed as the most significant overhaul of federal health care regulation since Medicaid and Medicare. The provisions of the ACA have been gradually rolled out since the law was enacted in 2010. Perhaps most germane to the needs of people with psychiatric disabilities is the broadening of Medicaid and Medicare definitions, so that more people receive health care under one or the other of these.



3.  What Is Psychiatric Rehabilitation? 69

SUMMARY AND CONCLUSIONS This chapter has defined psychiatric rehabilitation as systematic efforts to help adults with psychiatric disabilities move forward in their recovery process. Over the last four decades, many different models of psychiatric rehabilitation have been developed—some based on specific ideologies, others developed in response to funding initiatives, and still others developed on a trial-and-error basis. In its evolution, the field has moved away from some early assumptions related to the concepts of asylum (people with serious mental illness are best served in enclaves apart from mainstream community life), separation of rehabilitation and medical models (psychiatric rehabilitation programs should distance themselves from mental health treatment), and transitionalism (people are best helped through gradualistic, stepwise programs of preparation for community living). Many of these ideas have died hard, just as in an earlier era in which many providers stubbornly maintained their faith in psychodynamic interventions to help people, despite overwhelming evidence to the contrary. In fact, many practices continue to be offered despite the lack of evidence for their effectiveness—or, worse, evidence that they actually interfere with the recovery process. As much as possible, the aim of this book is identifying and elaborating evidence-based psychiatric rehabilitation practices. However, its focus is not limited to these practices for several reasons. First, in addition to EBPs, we describe current psychiatric rehabilitation practices, while recognizing that these often fall far short of the ideal (Lehman et al., 1998b; Torrey et al., 2012). Deficiencies in current practices are made clear when they exist. These include (1) lack of access to practices that should be available (Hall, Graf, Fitzpatrick, Lane, & Birkel, 2003); (2) promotion of practices that are demonstrably less effective than evidence-based alternatives; and (3) inadequate implementation of EBPs (Bond, 1991; Moser, DeLuca, Bond, & Rollins, 2004; Rosenheck, Neale, Leaf, Milstein, & Frisman, 1995; Torrey et al., 2012). Second, this book includes descriptions of promising approaches, which are interventions that have not been researched enough to warrant designation as EBPs. Third, peer-run alternatives represent a special category that warrants attention despite an inadequate empirical base. Due to their voluntary nature, peer-run approaches are difficult to evaluate by means of randomized controlled trials (RCTs). Nonetheless, these “value-based services” should be encouraged as complements to the formal mental health care system (Bellamy et al., 2017; Frese, Stanley, Kress, & Vogel-­Scibilia, 2001; Tracy, 2003). The history of mental health reform also suggests that peer advocacy has had a tremendously positive effect on keeping priorities straight. Fourth, we describe practices that address critical domains of functioning, even though at this point it is not possible to designate any specific model or models as the best. This category includes psychiatric rehabilitation approaches addressing housing, social networks, education, physical health, involvement with the criminal justice system, and trauma (to name some examples). Program models have been developed in each of these areas, and in some cases these models have been studied in rigorous research designs. Yet their status as EBPs is in doubt. In the meantime, psychiatric rehabilitation programs must address these issues as best they can; the history of how community mental health care program models have been developed amply documents the disastrous consequences of ignoring such problems.

CHAPTER 4

Psychiatric Disability and Equity

M

any of the disabilities experienced by people with serious mental illness are actually caused or worsened by social determinants of health such as race, ethnicity, gender identity, and sexual orientation. It is by no means identity with diversity per se that leads to disparity but rather the racism, sexism, and other forms of oppression that come from the majority population and limit one’s health options. People from these groups often experience greater social disadvantages such as poverty and criminal justice system involvement, which further worsen disabilities and undermine recovery. Equity is a fi rst value of the health care system that reflects fully accessible, available, and culturally relevant interventions that meet individuals’ dynamic defi nition of their health and wellness goals. This chapter begins with a comprehensive defi nition of social determinants and disadvantages, followed by a summary of research on how these determinants undermine almost every domain that defi nes needs and goals. The recovery system needs to recognize disparities that result from these determinants and seek to replace the status quo with services that represent the divergent and complex needs of the rainbow of diverse options. This means framing diversity in terms of pride and not victimhood. Equitable services are often grounded in peer-based systems. Community-based participatory research is crucial to including the diverse voice in the actual development and evaluation of recovery-based programs. We end the chapter with an example of how social determinants undermine service engagement and ways to resolve this gap to yield culturally sensitive recovery programs.

SOCIAL DETERMINANTS AND DISPARITIES Social determinants significantly impact the life goals of people who have psychiatric disabilities separate from disease processes (e.g., psychiatric symptoms and corresponding dysfunctions) that undermine recovery. According to the DHHS, social determinants of health are the conditions in the environments where people are born, live, learn, work, play, worship, and age that affect a wide range of health, functioning, and quality-of-life outcomes and risks (Blackburn, Osborn, Walters, Nazareth, & Petersen, 2018; Correll et al., 2017; Misiak et al., 2021; Walker et al., 2015). In trying to make sense of social 70

4.  Psychiatric Disability and Equity 71 

determinants, we distinguish diversity, equity, and inclusion (DEI) groups from resulting social disadvantage. DEI groups are often described as outgroups in social psychology (Brewer, 2007), or as suspect classes in the law (Strasser, 1991), reflecting their minority position. Instead of viewing them through the lens of disadvantage and negativity, however, DEI groups are better viewed in terms of the culturally rich experiences of a collection of people that differs from the majority and suggests unique paths toward recovery. Regrettably, people from DEI groups more often experience social disadvantage (e.g., poverty, criminal justice system involvement, or immigration challenges) that evolves from a pernicious social history reflecting structural discrimination; specific disadvantages are summarized in this chapter.

DEI Groups Figure 4.1 comprises eight DEI groups that are commonly included in research on social determinants and implicated in disparities among people with psychiatric disabilities. 1.  Race and ethnicity. Although race and ethnicity are evolving social constructs, the U.S. Office of Personnel Management and the U.S. Census Bureau are widely cited arbiters of race and ethnicity in American health (U.S. Census Bureau, n.d.-a, n.d.-b). The census distinguishes five races—­A merican Indian or Alaska Native, Asian, Black or African American, Native Hawaiian or Other Pacific Islander, and White—plus a single ethnic category, Hispanic or Latinx. The evidence is clear; compared to the White majority, for people with psychiatric disability, achieving life goals is significantly worse for people of color, including those who are Black, Native American, Latinx, and Asian American (DHHS, Office of Minority Health, 2022). 2.  Religion. Like race and ethnicity, the United States is rich in religious diversity. A 2021 survey from Pew (Pew Research Center, 2021) described several groups, with Christians (i.e., Protestant, Catholic, Mormon) dominating (65%); Buddhism, Hinduism, Islam, and Judaism at 1% or less; 29% characterizing themselves as unaffiliated, agnostic, or atheist; and 2% as other. Discrimination experienced by non-­Christian communities is associated with increased stress (Lewis, Cogburn, & Williams, 2015; Williams, 2018) leading to worse health (Mouzon, Taylor, Keith, Nicklett, & Chatters, 2017; Oh, Yang, Anglin, & DeVylder, 2014).

Diversity, Equity, and Inclusion Race and ethnicity Religion Nation of origin Gender identity Sexual orientation Age Rural community Disabilities per se

Social Disadvantage Poverty Criminal justice involvement Language, acculturation, and immigration Unaccommodating institutions

FIGURE 4.1.  Social factors that impact disabilities of people with lived experience.

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3.  Nation of origin. This includes equity and disparity issues for people or their families who have immigrated to the United States or who strongly identify with their countries of origin. Although acculturation (learning and adapting to a new culture; Berry, 2006; Ward, 1996) and enculturation (continuing to identify with one’s culture of origin; Kim, 2007) are rich experiences, they may be negatively associated predictors of health, wellness, and disability (Kasirye et al., 2005). This, as well as reduced English fluency, are discussed more in the section “The Worsening Effects of Social Disadvantage,” below. 4.  Gender identity. Much research has examined the effect of binary models of gender (male or female) on health patterns among people with psychiatric disabilities. Research shows, for example, that the course of schizophrenia is worse in males (Ochoa, Usall, Cobo, Labad, & Kulkarni, 2012; Li, Ma, Wang, Yang, & Wang, 2016; Rietschel et al., 2015). Far fewer findings exist on the interaction of transgender or nonbinary/nonconforming identity, but studies suggest that corresponding discrimination has harmful relationships with health in general (Downing & Przedworski, 2018; Fredriksen-­Goldsen et al., 2014) and with health and recovery among people with serious mental illness (Scheer, Harney, Esposito, & Woulfe, 2020). 5.  Sexual orientation. Research fairly consistently shows sexual orientation minorities (gay, lesbian, bisexual, asexual, pansexual, and questioning) show worse patterns in health compared to the straight minority (Jackson, Agénor, Johnson, Austin, & Kawachi, 2016; Mayer et al., 2008). Discrimination related to intersection of sexual orientation with mental illness also shows worse health and recovery (Terra et al., 2022; Han, Duncan, Arcila-Mesa, & Palamar, 2020). 6.  Age. Defined as years from birth, age interacts with mental illness and recovery, especially at the extremes of the continuum. Children and youth with mental illness are more likely to be absent, suspended, or expelled from school (Blackorby & Cameto, 2004). Parental involvement and decision making are especially important for children’s health (Hingle, O’Connor, Dave, & Baranowski, 2010; Van Lippevelde et al., 2012). Alternatively, older age (e.g., greater than 60 years old) is associated with health in general (Boersma, 2020; Maresova et al., 2019) and worse health among people with serious mental illness (Bartels, 2004; Bartels & Pratt, 2009). Research here seeks to unpack the physiological impact of old age, with aging representing a social determinant of health (e.g., age discrimination; Baumgartner et al., 2021). 7.  Rural community. Policies and innovations driving the health and mental health care system seem to be dominated by urban or suburban settings. People living in small towns or other rural areas may have worse outcomes (Li et al., 2011). Causes of this disparity are diverse but may include diminished access and availability to services (Gamm, Hutchinson, Bellamy, & Dabney, 2010) and diminished cultural competence of the provider workforce (Gamm, Castillo, & Pittman, 2010). 8.  Disability per se. Disability in itself defines a DEI group that is a social determinant of health. As explanations of the psychiatric disabilities and one’s mental health career mature, models have developed that frame psychiatric experience and recovery as a culture: not solely a flawed experience, but a group with shared history and experience that defines a positive lore and legacy. Shared history also applies to people with physical, sensory, developmental, and other disabilities. Stigma and discrimination remain, with

4.  Psychiatric Disability and Equity 73 

PERSONAL EXAMPLE Recovery on the Streets Langston Jones, a 32-year-old Black man with serious mental illness, was born and raised on Chicago’s South Side. He was a homeless man staying at either the Pacific Gardens shelter or in a slapped together tent city at the entrance to the Dan Ryan Expressway at Roosevelt Road. His psychotic symptoms, including unclear thinking, occurred fairly regularly, worsened by an alcohol-use disorder. He was recently released from Stateville prison after a 2-year sentence for aggravated assault. As a Black man, he was frequently stopped by the Chicago police for loitering or suspicion of robbery. Mr. Jones did not want to enter a residential program for people with mental illness, nor did he want to travel to a city clinic for medication and other case management. He found city clinics to be run by “unaware” White professionals, with police officers providing security at the front desk. A local recovery-based agency hired peer community workers to go into the field and meet the needs of people who were homeless on the South Side. As peers, these workers were African Americans in recovery from mental illness. Many also had prior experiences with homelessness, corrections, and/or substance use disorder. LaToya Hampton was a Black woman who, until engaging successfully in her own recovery-based program, bounced back and forth between the state mental hospital and Cook County jail. Ms. Hampton was trained on effective support services to become a peer community worker. She had met Mr. Jones several times at the Dan Ryan camp, where she began to build a relationship with him. Among other things, she introduced Mr. Jones to the team nurse who provided primary care in the camp to interested parties. One time, Hampton accompanied Jones to a Walgreens drugstore for the COVID vaccine. Hampton also went with Jones to check out a local housing first program. Housing first providers, described more fully in Chapter 10, eschew rules and regulations (suggest as curfew or daily report) which many people find onerous. Jones checked into his own apartment in the housing first program and, with Hampton’s support, was able to stop living on the streets.

research evidence showing that disabilities can be a major source of disadvantage in the health system.

The Worsening Effects of Social Disadvantage In Chapter 2, we distinguished structural stigma, experienced at societal levels, from better known research on the individual’s impact: public and self-­stigma (Hatzenbuehler, 2016, 2017; Hatzenbuehler & Link, 2014). Like self-­stigma, prejudicial processes evolve from political and economic forces that lead to discriminatory structures that undermine opportunity. Broadly, structural stigma has led to high rates of social disadvantage experienced by people in DEI groups (see Figure 4.1). Four forms of social disadvantage that are prominent in the research literature are summarized here. 1.  Poverty. People with serious mental illnesses often have incomes below the poverty line (Levinson et al., 2010; Sareen, Afifi, McMillan, & Asmundson, 2011). Absence of sufficient income is significantly associated with health challenges (Ribeiro et al., 2017).

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Poverty among DEI groups and for people with psychiatric disability lead to housing instability (Barile, Smith Pruitt, & Parker, 2018) and food insecurity (O’Reilly, Hager, Harrington, & Black, 2020). 2.  Criminal justice involvement. People with mental illness from DEI groups have higher rates of disabilities at both ends of the crime continuum: victims and arrestees. They are more likely to be victims of violent crime, which worsens health and recovery (Teplin, McClelland, Abram, & Weiner, 2005; Thomas, Nixon, Ogloff, & Daffern, 2019). Trauma related to crime and assault often yields long and enduring effects (Elhai, North, & Frueh, 2005; Sharma, 2003). People with mental illness also are often arrestees (Brame, Bushway, Paternoster, & Turner, 2014; Piquero, 2015) with the corresponding loss of freedom (jail, prison, probation, or parole) interfering with recovery goals (Wennerstrom et al., 2022). 3.  Language and immigration. The health needs of people with psychiatric disabilities from nations of origin other than the United States are often challenged by language, acculturation, and immigration. Non-­English speakers are greatly hampered in navigating the American service system (Timmins, 2002). Difficulties acculturating to a Western approach to health care undermines individual goals (Suarez-­Balcazar, Viquez, Miranda, & Early, 2020). Refugees may struggle with trauma from their community of origin as they immigrate to the United States from war-torn or other politically and economically challenged nations (Fino, Mema, & Russo, 2020; Ostergaard et al., 2020). Refugees with mental illness have an especially difficult time with health and wellness goals (Berthold et al., 2014). 4.  Unaccommodating institutions. Although the ADA proscribes restrictive health practices and prescribes reasonable accommodations, people with psychiatric disabilities continue to lack these entitlements in terms of education and work (Hill, Maestas, & Mullen, 2016). Lack of accommodations also has direct effects on recovery goals (Drainoni et al., 2006; Mason et al., 2019). Specifically, employers and other groups covered by the ADA fail to provide reasonable accommodations when indicated (Sevak & Khan, 2017; Syma, 2019). Similarly, education systems fail to provide necessary on-­campus accommodations that help students with disabilities address their goals.

Identity Not Essentialism There are differing ways of understanding DEI groups. Let’s consider essentialism versus constructivism. Essentialism defines DEI groups and their “membership” in presumptions of fundamental endowment or inheritance, often with roots in biology or birth. For example, an essentialist assumption would be that all Latinx share the same body features, religious beliefs, and cultural preferences. These presumptions oversimplify real-life experience by reducing complex groups to neat categories with seemingly well-­defined and immutable boundaries: their essences. This is evident in past pseudoscience discussions of race where ethnic phenotypes were linked to genotypes resulting in five supposedly definitive categories: Caucasoid, Capoid, Mongoloid, Australoid, and Negroid (Jackson, 2001). Essentialists presume that evolution and natural development create these DEI groups, which subsequently defines people with corresponding phenotypes. Essentialism has met robust criticism when it mistakes variations of phenotype into categorical differences (“All women are alike”), leading to misattribution of individual choice and behavior in terms of one’s group assignment (“Mary decided to become a nurse because she is a woman”), opening the door to stereotypes and discrimination

4.  Psychiatric Disability and Equity 75 

(“Women are not capable of being physicians, so Mary can’t do it”) (Phillips, 2010). These criticisms have led to a stern rebuke from the American Association of Biological Anthropologists (2019), asserting that essential conceptions of race and ethnicity emerged from Western colonialism, oppression, and discrimination. Concerns about essentialism have been replaced with insights from social constructivism, the fundamental insight that perceptions and experiences of DEI groups (from both within and outside the group) are created in a social world (Berger & Luckman, 1966). For example, a Black person’s understanding of being Black is partly built on ways in which Whites engage them. These broad social theories are meaningful to behavior when they explain group and individual identity relative to recovery. Tajfel (1974, 1981) argued that humans have intrinsic goals to view themselves in terms of one or more ingroups; they then craft their identity on the basis of membership of that group. Groups influence one’s sense of being an individual (Who I am!) (Suarez-­Balcazar et al., 2020), self-­concept (How I describe myself!), and self-worth (Why I matter!) (Ashmore, Deaux, & McLaughlin-Volpe, 2004). These personally meaningful constructs are fluid, multidimensional, and reflect one’s lived world. Social psychologists have shown that individuals who identify with their stigmatized group report less stress arising from prejudice and better self-­esteem. This has been demonstrated for Black people (Branscombe, Schmitt, & Harvey, 1999), older adults (Garstka, Schmitt, Branscombe, & Hummert, 2004), women (Schmitt, Branscombe, Kobrynowicz, & Owen, 2002) and the LGBTQ community (Halpin & Allen, 2004).

Pride, Not Victimhood Another problem with essentialism occurs when defining DEI groups in contrast to the majority (e.g., White, cisgender, straight males), thereby grounding the narrative in terms of downward comparisons. Compared to White men, for example, Black women have fewer opportunities and resources, which accounts for disparities across life goals; this is why their unemployment rate is so high. Although this may be an accurate representation of the social injustices that plague a minority group’s history, the downward comparison becomes part of the group’s essence, leading to unintentional stories of loss and victimhood that imply inferiority. It frames a group as meek and wounded, suggesting they are unable to thrive on their own. This kind of downward comparison leads to calls for pity. People wrongly think the goal of social justice is for the majority to bestow to minorities opportunities they need to achieve their goals. The privileged class should share their privileges with underserved groups. While the overall intent is true, the sentiment is troubling: that the down group should be pitied. This needs to be replaced by parity. Social justice rests on power where people of all groups avail resources and opportunities. Black civil rights leaders framed power by calling their movement “Black Pride” (Black Power, 2016; Sniderman & Piazza, 2002) with its emphasis on pride and economic power, leading to the creation of appropriate political and cultural institutions. Black Pride can be traced back to Frederick Douglass in the 1850s, and embraced by 1950–60s leaders including Martin Luther King, Jr., Malcolm X, and Roy Wilkins. Similarly, the LGBTQ community embraced Gay Pride to promote narratives of self-­affirmation, dignity,  and equality (Britt & Heise, 2000; Corbett, 1994). Pride movements accomplish their goals by highlighting rich histories related to cultural and political accomplishments, including the arts and increased visibility of LGBTQ people as a social group. What about pride and psychiatric disabilities? Some might think that the defining

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qualities of mental illness are fundamentally negative, based on symptoms and dysfunction. Hence, the primary goal of mental health treatment, of being in the mental health group, is to get out of it. Hence, one might think people with mental illness should not identify with their illness. Research is mixed here. Some findings support the benefits of avoiding a mental illness identity. Research, for example, has found correlations between assuming a sick patient role and subsequent pessimism (Lally, 1989). People who believe identifying with mental illness threatens their broader well-being are likely to suppress that identity (Rüsch, Corrigan, Wassel, Michaels, Larson, et al., 2009; Rüsch, Corrigan, Wassel, Michaels, Olschewski, et al. 2009). This would seem to imply that identity as a person with mental illness should be avoided. However, relationships between identity and self-­stigma are more complex. Research has shown that effects of illness identity are influenced by perceived legitimacy of mental illness stigma (Lysaker, Davis, Warman, Strasburger, & Beattie, 2007). Those who identify with mental illness but also agree with the stigma of their disorder (“I guess that’s right; people with mental illness choose their illness because they are weak”) report less hope and self-­esteem. Conversely, persons whose sense of self prominently includes their mental illness, and who reject the stigma of mental illness, showed not only more hope and better self-­esteem but also enhanced social functioning. Hence, identifying with mental illness does not automatically lead to more stress; it is the perceived legitimacy of the stigma that threatens identity and harms emotional health. The evolution from patienthood to personhood is not necessarily a rejection of mental illness but rather an integration of its central experiences into a total self-image (Roe, 2001). People with lived experience of recovery have Mad Pride, which is a similar effort to change the dialogue about mental illness from harm and failure to identity and accomplishment (Farber, 2012; Rowland, 2015).

Intersectionality The effects of DEI, social disadvantage, and psychiatric disability on health and wellness are additionally complex when considering the multiple intersections of identities that occur within the individual. The idea of intersectionality emerged from feminist psychology to describe the oppression experienced by Black women; that is, DEI identity is sometimes similar to the experience of Black men or White women, sometimes the combination of both, and sometimes unique to the interaction (Cole, 2009). The life choices and opportunities of individuals with psychiatric disability are also influenced by multiple DEI identities and social disadvantages that combine in unique, integrated patterns. Oexle and Corrigan (2018) unpacked the effects of intersectionality on psychiatric disability by differentiating two perspectives using an example from the life experiences of Terrell Washington, a Black man with serious mental illness. The first view is double disadvantage. The harmful effects of stereotypes accumulate as the person is identified with multiple DEI groups (Grollman, 2014). As Terrell is associated with multiple identities including disability, he is viewed as more different and less worthy of opportunities, including those related to health and wellness (Corrigan, Talluri, & Qin, 2021; Shah, Nieweglowski, & Corrigan, 2022). The other perspective is prominence. One perceptually salient DEI group in an intersection may inhibit another and dominate negative reaction (Kang & Bodenhausen, 2014). Prominence is not solely influenced by perception (i.e., Terrell’s black skin) but also context. A minority racial group, for example, becomes more prominent in primarily White settings. Hence, Terrell may experience worse opportunities in service systems dominated by Whites. Ideas of intersectionality are relatively

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new, with calls for both research methods and practice applications as recovery-based interventions continue to evolve.

COMMUNITY-BASED PARTICIPATORY RESEARCH Disability, recovery, and rehabilitation are ever-­evolving constructs requiring effective research to identify what works for individual groups; one dominant agenda of the past decade is representing lived-­priorities of the wonderful variety of DEI groups and corresponding social disadvantages. CBPR has emerged as one way to do this; it is all about partnership. Traditional sciences framed people with lived experience as objects of research. Both qualitative and quantitative methods were then used to obtain meaningful information from them so scientists can, through their methods, determine answers to what they hypothesize to be research questions. CBPR reworks the research enterprise so key stakeholders join a team with shared authority over all segments of development and evaluation. CBPR is defined by 10 principles: (1) recognize community as the unit of identity, (2) build on strengths of community, (3) facilitate collaborative and equitable partnerships in all research phases through power-­sharing processes, (4) promote co-­ learning and capacity building among partners, (5) achieve balance between research and action, (6) emphasize public health problems of local relevance, (7) involve systems development, (8) disseminate findings to all partners and constituencies, (9) require longterm process and commitment, and (10) address issues of race, ethnicity, racism, and social class through the lens of cultural humility (Minkler & Wallerstein, 2011). CBPR has been described as a moral imperative for people with disabilities—to borrow a term from the disability rights movement, “nothing about us without us” (Collins et al., 2018; Hancock, Bundy, Tamsett, & McMahon, 2012) CBPR in rehabilitation research is especially compelling at two times in the process: 1.  Going into the project. At start-up, the CBPR team members come together around a central, loosely defined concern (e.g., how might we: address health and wellness needs in the existing health care system, or implement supported education in community colleges, or link with faith-based communities to address individual spiritual priorities?) This opening definition focuses the CBPR team; members with psychiatric disability from DEI groups already have years of experience reacting to the focus in the real world that leads to meaningful research questions and hypotheses. None of the team members with lived experience dictate hypotheses, because the goal of CBPR is research. Hence, the team as a whole uses start-up hypotheses to collect information that confirms or further revises questions and the methods meant to answer them. This typically includes qualitative research, where people from the focal community group are interviewed about their perceptions of the problem and solutions, and quantitative research, where these perceptions are tested in rigorous study. 2.  Coming out of the project. CBPR is action research; its first goal is to use findings to actually change policy and practice so people with psychiatric disabilities from DEI groups receive services that better meet their needs and goals. The demands of different types of stakeholders at project completion on the team yield different actions coming out of CBPR. Researchers are often driven by academic demands to write up the study, put it on the library shelf, and go on to the next grant-­funded project often in different areas. It is the CBPR team member with lived experience who has historical interest in project foci

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with the promise that it will lead to better services. They are the advocates on the team; they are most likely to turn research into action. This is where power and CBPR become most obvious; agendas from the grassroots have emerging and significant credibility in the current U.S. zeitgeist. As alluded to earlier, CBPR is conducted by teams that vary in stakeholder representation defined by and built around people with lived experience of psychiatric rehabilitation and DEI group. This lived experience group is defined by a community-of-­interest (e.g., Black people with serious mental illness who are homeless). Hence, the team for this kind of CBPR would comprise Black people with serious mental illness who are homeless. They come together in a group of four to five and partner with other stakeholders, including scientists who are in some way technicians of the group, posing methods or analyses for the study, and then guiding the discussion about interpretations of findings. The team also includes family members, friends, others from the community, service providers, administrators, and policymakers. The entire team consists of about 10 people. Team processes may require months to accomplish; team members hope they can commit to this kind of timeline over the course of a study.

BARRIERS TO ENGAGEMENT One of the broadest effects of disparities due to DEI and social disadvantage occurs as a barrier to engagement in recovery-based interventions, reducing the degree to which individuals regularly interact with a recovery team to attain their goals. As discussed in Chapter 3, engagement does not mean compliance or adherence; opting to not engage does not mean failing to understand one’s problem or to join in services prescribed by health professionals. Engagement reflects the health system and the degree to which it is welcoming, whether health care providers and the services they provide reflect an individual’s sense of personal goals and priorities. Engagement is broadly defined with contributions from the provider team; these include mental health professionals, vocational and educational counselors, housing specialists, criminal justice transition teams, and support providers, both peers and nonpeers. People who engage well in services achieve more of their recovery goals. Figure 4.2 summarizes three sets of barriers to engagement that especially represent the effects of DEI and social disadvantage. They are framed in terms of three questions. Where: In what settings and with what services are evidencebased recovery services available? Who: Who are the providers of these services? What: What are the specific services provided?

Where: Barriers to Services and Settings Evidence-based services practices are often not available or not accessible in low-­income communities where people from many DEI groups with psychiatric disabilities live (Buzza et al., 2011; Chan, Hart, & Goodman, 2006). In addition, services are often difficult to access because of long urban commutes with public transportation (Hall, Kurth, Gimm, & Smith, 2019; Syed, Gerber, & Sharp, 2013), and programs frequently located in relatively high crime areas (Tung, Boyd, Lindau, & Peek, 2018). Rural communities have additional hurdles to availability (Buzza et al., 2011; Chan et al., 2006) and accessibility (Dassah, Aldersey, McColl, & Davison, 2018; Iezzoni, Killeen, & O’Day, 2006). Administrative steps central to guiding appointments and follow through also

4.  Psychiatric Disability and Equity 79  Where Services and Settings • Unavailable • Inaccessible • Payor coverage

Who

What

Providers • Insufficient providers from minority DEI • Lack of cultural competence of many DEI providers

Interventions Conceptualization of disability and corresponding intervention fail to reflect varied DEI perspectives

Engagement

Recovery and Wellness

FIGURE 4.2.  Barriers to engaging in recovery-­oriented services. DEI, diversity, equity, and inclusion.

interfere with service engagement (Hwang et al., 2008; Langheim, 2014). Facilities are often unfriendly to DEI groups, especially to people with physical disabilities (Drainoni et al., 2006; Pharr, James, & Yeung, 2019). Access to third party payers that support these interventions is hampered by whether the individual is certified to receive different levels of government and entitlements (Artiga, Damico, & Garfield, 2015) and whether providers assist in accessing those entitlements (Bowers, Owen, & Heller, 2017). Insurance is more than a binary construct: “Yes or no, do people have benefits they might avail for health care costs?” Description of the role of third-party payment includes type and breadth of insurance, place in a larger service system (e.g., does an individual provider accept an insurance plan?), and administration and logistics to avail third-party payment.

Who: Barriers by Providers The by whom of most health care services may be reduced to the individual provider–person or provider team–person relationship. Providers are professionals or paraprofessionals offering direct services across the range of recovery goals. They also include reception and administrative support and entitlement personnel. DEI match between provider and person has been shown to influence subsequent engagement with the care plan (Ziguras, Klimidis, Lewis, & Stuart, 2003). Research, for example, shows matching race and/or ethnicity of persons with psychiatric disabilities and providers enhance engagement and outcome (Hill, Jones, & Woodworth, 2020; Nguyen et al., 2020; Takeshita et al., 2020), as do matches that reflect gender identity (Sacks, 2013; Zhao, Dowzicky, Colbert, Roberts, & Kelz, 2019) and sexual orientation (Bishop, Crisp, & Scholz, 2022; Lisy, Peters, Schofield, & Jefford, 2018). Corresponding policies have called for professional training and education of students from DEI groups, leading to increased hiring and support of paraprofessionals and professionals.

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Lack of cultural competence and humility by the existing provider workforce staff is an additional barrier to service engagement. Several systematic literature reviews (Betancourt, Green, Carrillo, & Park, 2005; Henderson, Horne, Hills, & Kendall, 2018; Lie, Lee-Rey, Gomez, Bereknyei, & Braddock, 2011) have defined cultural competence or the lack thereof, including antecedents such as cultural openness, awareness, desire, and knowledge; these reviews have also defined attributes such as respecting and tailoring care aligned with personal values, and provision of equitable and ethical care with sensitivity. Documented consequences of culturally competent and humble providers include satisfaction with care, perception of quality, effective interaction, and improved health outcomes (Lie et al., 2011). Especially important here is replacing essentialist with constructivist views of DEI (Garneau & Pepin, 2015). As said earlier, essentialism was the status quo perspective (i.e., DEI groups are defined by common values, beliefs, and practices that are objectively observable and stable over time; Garran & Werkmeister Rozas, 2013). This leads to providers working with someone from specific DEI groups with prior presumptions of their values and goals. Proponents of constructivist models frame cultural competence as dynamic processes within a DEI group, as well as the changing identities of individuals in that group (Carpenter-Song, Schwallie, & Longhofer, 2007).

What: Interventions The “what” of services is defined by evidence-based interventions described by practice guidelines specifying provider behaviors meant to help people with disabilities achieve their health goals. These guidelines are typically grounded in conceptualizations of the disabling condition; for example, the phenomenology of the disability itself, the way it undermines life goals, its causes, and factors that mitigate its ongoing experience. The task becomes even more complex when considering the description of DEI and social disadvantage intersections. American approaches to psychiatric rehabilitation have been grounded in Western models (Suarez-­Balcazar et al., 2020) that often ignore other perspectives to understanding health and wellness (Hogan, 2019; Dodge, Daly, Huyton, & Sanders, 2012). Corresponding guidelines then lead to a menu of interventions that may assist people in addressing their health concerns. These too have been dominated by the West in the United States, though emergence of alternative and complementary approaches to care have begun to open service options to broader DEI perspectives (Attena, 2016; Kisling & Stiegmann, 2022). Consider a prominent example. SDM is a Western-­centered approach to rehabilitation that dominates psychiatric rehabilitation (Agency for Healthcare Research and Quality, 2016; Edwards & Elwyn, 2016) and includes three components: (1) Providers share information regarding specific concerns (e.g., related to work, education, or housing goals) and corresponding interventions with costs and benefits of each; (2) people explore their preferences with the provider regarding costs and benefits of each intervention; and (3) interactive discussion between person and provider yields mutual decisions about subsequent treatment and testing. Despite its promise, concern has been expressed about self-decision-­making models, especially when considering people from DEI groups where the broader social network may be keenly involved in treatment decisions (Corrigan & Lee, 2021). SDM reflects self-­determination theory, which identifies autonomy as essential for psychological growth and well-being (Attena, 2016; Kisling & Stiegmann, 2022). Autonomy, however, seems to reflect Western, individualist perspectives that may be less valued in more Eastern or collectivist societies (Oishi & Diener, 2001). Miller

4.  Psychiatric Disability and Equity 81 

(1997) suggested that directive feedback from family members may yield more satisfaction than autonomy in some DEI groups.

SUMMARY AND CONCLUSIONS Discussion like these have changed from a focus on disparity to promotion of equity. While the goal is to erase disparities so people, regardless of DEI group and social disadvantage, can fully avail services to meet personal goals, equity is meant to celebrate the process. The discussion has evolved from “What should we stop doing?”—how have majority cultures failed underserved groups—to “What should we craft in an affirmative manner?” Equity is celebratory; acknowledging diversity across all groups recognizes the strengths and resources of each. This is not a rehash of color blindness, a 1960s idea that prejudice and discrimination can be erased by ignoring differences between groups. Pride shouts out difference, followed by strategies to honor it. While equity needs to broadly be the goal across the world, goals of equity become a bit more focused when looking within a community. We need to recognize that communities are often described by shared values related to culture, religion, gender identity, sexual orientation, and disability. Recovery-based programs that reflect the generic world—the cross-­diversity approach—ignore the need to frame goals and actions specific to the community. Going forward in this book, readers should ask themselves how specific principles and practices would be experienced by different DEI groups.

PA R T I I

REHABILITATION STRATEGIES

CHAPTER 5

Assessment

A

ssessment is the cornerstone of intervention for persons with psychiatric disabilities. Understanding people’s needs and aspirations in their community is the fi rst step toward crafting plans meant to help them achieve their aspirations. Assessment reflects the bidirectional goals of psychiatric rehabilitation guiding this text: to help these persons, and to have an impact on their community. First, assessment includes activities meant to describe a person with a psychiatric disability, so that the team of providers (led by that person!) better understands goals and barriers to achieving these goals. An important standard for the success of assessment is the effectiveness of the plans it generates for helping people in their recovery. Comprehensive assessment is multilevel, examining interlocking aspects of the individual. A summary of assessment domains is provided in Table 5.1. The assessment process may begin with a summary of needs, of corresponding perceptions of interventions in light of those needs, and of readiness for change. Assessment may also include functioning and disabilities; diagnosis and symptoms that might cause these disabilities; and history of trauma. Although this kind of focus is necessary, it stresses the person’s negative aspects, ignoring important aspects of the full profile of relevant factors. Assessment should also include a review of personal strengths, as well as the person’s perceptions of recovery, empowerment, and self-determination. In traditional reviews of assessment areas, diagnosis and symptoms, which have tended to be the basis of understanding psychiatric disabilities, are often provided fi rst. However, there is concern about the value of diagnosis for rehabilitation planning; for example, diagnosing someone with schizophrenia may not be useful for rehabilitation planning (Corrigan, 2013; Craddock & Mynors-Wallis, 2014). In addition, there is some concern that providers may rely on symptoms excessively; for example, a rehabilitation provider may prejudge someone with thought disorder as unable to work in an office and therefore dissuade the person from seeking jobs in these kinds of settings (Corrigan, 2013). Nevertheless, there is value in assessing these domains, though they should be deemphasized for rehabilitation providers and hence are put toward the end of the list. Second, assessment describes the community in which people with psychiatric disabilities pursue their aspirations. Community might not be the best word here; more broadly, it is the idea of social system. However, social system is a sterile term, lacking the nuances of interactions that need to be understood. Community includes both familial and sociocultural worlds in which people achieve goals. Family is a complex 85

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TABLE 5.1.  Domains of Assessment Individual

Community per se

Needs and goals Strengths Recovery, empowerment, and hope Functioning and disabilities Quality of life Treatment decision making Readiness for change Diagnosis and symptoms Substance abuse Trauma

Task analyses (e.g., job analyses) Resources and supports Prejudice and discrimination Affirming attitudes and behaviors



Service system Resources and priorities Program satisfaction Fidelity to evidence-based programs Cultural competence and humility

construct with a definition that may vary considerably across cultures, depending on who exactly falls into an individual’s family network: parents, spouse/partner, siblings, children, grandparents, aunts/uncles, and cousins (see Chapter 12). Notions of family also seem to vary across cultures, with those of European heritage seeming to reflect more of a focus on a nuclear family (parents/siblings or spouse/children), while groups from Africa, Central/South America, and Asia have much broader definitions (see Chapter 4; Qiu, Schvaneveldt, & Sahin, 2013; Yi, 2020). In addition, family roles in the life and treatment decisions of people with mental illness seem to vary by culture: Families of European descent seem to embrace the self-­determination of a person with disabilities more than families in other cultural groups, especially those of Asian backgrounds (Hsu et al., 2008; Lam, Tsang, Chan, & Corrigan, 2006; Woo & Chung, 2013; Nguyen-­ Truong et al., 2021). Community assessment includes identification of opportunities and resources that people use to meet their goals. More formally, assessment may examine reasonable accommodations that specifically promote vocational placements and independent living. Assessment here also considers the degree to which the public endorses the stigma of mental illness, and the extent to which this endorsement leads to structural barriers that undermine work opportunities (e.g., is a company less likely to provide accommodations for workers with psychiatric disabilities because “those people are weak”?). Complementing the assessment of stigma is the assessment of affirming attitudes, the degree to which the public embraces notions such as recovery and self-­determination. Tangential to community assessment is assessment of the service system itself. In the past few decades, people with lived experience and their families were viewed as consumers of services; providers needed to be mindful of status in this light, crafting strategies and programs that reflected consumer priorities. A further status change has been promoted more recently: People with lived experience and their families should be more than just passive consumers of services. Since the services are often publicly funded and operated, people with lived experience, as citizens, should have leadership roles in using public funds to support specific kinds of interventions and programs (Davidson, Ridgway, O’Connell, & Kirk, 2014; Jones et al., 2021). This change in attitude leads to important questions (e.g., What is the breadth of services available to people with psychiatric disabilities in their area?). This might partially be assessed by cataloging agencies available in the community, as well as specific services provided within these agencies. The catalog should include information about accessibility factors (e.g., aspects of the process of getting into a program, time until admission, and funding issues; see Chapter

5. Assessment 87 

4). Profiles of providers may also be valuable (e.g., Does an agency include people with lived experience in the provision of services? Are providers from diverse communities?). Equally important is describing the depth of intervention. This includes whether providers and administrators embrace notions of recovery and empowerment in their services. Consistent with the bidirectional mandate, community and service system assessment turns the focus of rehabilitation providers from individuals per se to the social worlds in which they live. Community and service system assessments generate plans that have a positive impact on people’s lives and facilitate the achievement of their goals. Hence, community and service system assessment is valuable to the extent that it promotes rehabilitation plans that lead to meaningful change for people. This chapter begins with a discussion of the goals of assessment in psychiatric rehabilitation. Next, values and assumptions underlying the assessment process (e.g., the collaborative nature of assessment) are described. The chapter then discusses varied methods for assessing rehabilitation needs (e.g., self-­report and interview-based approaches) and the advantages and disadvantages of each method. Finally, the different domains of assessment for psychiatric rehabilitation are more fully described, and examples of specific measures and strategies are provided.

GOALS OF ASSESSMENT Assessment serves different goals, depending on whether an individual or the community/ service system is the focus. This is a useful but somewhat artificial dichotomy, because efforts overlap and are ongoing. Assessments oriented toward an individual serve two functions: (1) identification of rehabilitation needs and goals, and (2) evaluation of the person’s strengths within the context of the broader social network. Community and service system assessments document resources and supports in the person’s family, broader social support network, and community to help people achieve their goals, including a survey of available services in a community. Whereas existing strategies and instruments for individual assessments are broad, deep, and evidence-based, strategies for measuring the community and service system are lacking. Hence, the review in this chapter also suggests direction for development of measurement strategies in various aspects of the latter domains. Individual and community/service system assessments merge in the ultimate goal of the enterprise: development and monitoring of dynamic rehabilitation plans that best serve the person. From the perspective of the bidirectional service mandate, these plans reflect strategies with two targets: people and their social network (the goals of the provider), and the community with its service system (the advocate’s agenda). Rehabilitation plans for the individual are meant to reflect strategies in which people might engage to achieve goals. This requires a profile of available community and service system resources that might be matched to individual goals and barriers to these goals. For example, people might be referred to a supported education program to help them obtain the necessary certification to become a paralegal. Rehabilitation providers join the person in this effort. A sobering reality is that many communities lack interventions shown to be effective in addressing personal goals (e.g., supported education programs). Other communities may have education programs but lack cultural relevance to the person (e.g., to someone of African American heritage). This dictates the second target of planning: Rehabilitation advocates need to work with local systems and communities to find funds for start-up and support of innovative services.

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Domains of assessment are summarized in Table 5.1 and remain a focus in the rest of this chapter. First, however, the domains are summarized in terms of individuals or of their community.

Assessment of the Individual Assessment of Needs and Goals Identifying psychosocial priorities involves posing this question: What needs to be changed in order to reduce the impact of a psychiatric disability on people’s life? Perhaps it is better to state this question affirmatively: What needs to occur so that people can achieve their desires? Dimensions of personal life experience include mood (e.g., depression, anxiety, happiness); enjoyment of life; involvement in work or school; satisfaction with close relationships; self-care skills; managing substance use; health; and involvement with the criminal justice system (either as an arrestee or as a victim of crime). In addition to assessing these broad areas of functioning, more specialized measurement may be conducted to evaluate the effect of specific symptoms or abilities on functioning. For example, examining the frequency and nature of specific psychotic symptoms may provide valuable information about an individual’s anxiety or depression, because psychotic symptoms are often associated with these negative moods (Fowler et al., 2012). Similarly, social skills assessment may pinpoint specific skills that need to be taught in order to improve aspects of social functioning (Bhola et al., 2016; Kurtz & Mueser, 2008; Nangle, Hansen, Erdley, & Norton, 2009). Specialized assessment may also be conducted to evaluate whether cognitive impairments contribute to functional, social, or vocational problems (Brissos, Molodynski, Dias, & Figueira, 2011).

Assessment of Strengths Historically, psychiatric and psychosocial assessment has focused primarily on psychopathology and deficits, neglecting the role of strengths and capabilities. Lack of attention to people’s strengths can make them feel discouraged and inadequate. In addition, rehabilitation providers who fail to attend to persons’ strengths cannot fully avail themselves of assets in working toward rehabilitation goals. To address these problems, the rehabilitation field has shifted toward capturing a more comprehensive picture of an individual’s functioning, including personal assets and strengths (Rapp & Goscha, 2011). Strengths are broadly conceived as attributes that can be used to help an individual achieve personally valued goals (Tse et al., 2016). These attributes may be personal, social (i.e., based on others with whom the individual has contact), or present in the nonsocial environment. Examples of personal strengths include learning and achievement, determination, punctuality, affability, or good sense of humor. Examples of social strengths include the support of a family member, or interest and enjoyment in the person by a friend, a loving partner, or a concerned member of a faith-based community. Rehabilitation providers should not adopt black-and-white views of either personal or social strengths (e.g., “Yes or no? Harriet is smart”). Strengths are flexible constructs. For example, to what extent might Harriet draw on her learning skills and body of knowledge to meet work goals? In addition, strengths assessments may reflect the community. Examples of environmental strengths include whether a local health club offers discounts for people of low incomes, a pharmacy provides pillboxes for daily medications, or a café has free Wi-Fi.

5. Assessment 89 

Assessment of the Community As noted, researchers have been studying and developing rehabilitation measures for individuals to a much greater degree than measures for communities. In fact, the discussion of community assessment describes as much an ongoing research agenda as a menu of effective approaches currently available. Several questions need to be answered in assessing the community. First, what are the boundaries of the community? Geographic markers make sense sometimes. Everyone in the homogeneous small town of fictional Clifton (population of 200) might be targeted for a community assessment, but how is community assessed in a bigger city like Chicago? It has geographic neighborhoods that might be considered. But what if community is defined as members of a Korean Presbyterian church in a particular neighborhood? Accessing them would be a different task. Is community methodologically assessed by the sum of responses from members of the community? Typically, information from a whole community is hard to obtain. Hence, most survey strategies seek some sample of the community. Efforts need to be made to make sure that this sample is representative. For example, a sample of people surveyed in the Edgewater–­Uptown neighborhood of Chicago should try to represent the diversity of ethnic groups, gender identity and sexual orientations (as various residents define these), and socioeconomic statuses (including occupations, educational levels, etc.). This is a daunting task and is likely to be easier when community assessment is driven by specific questions. For example, community assessment might be used to understand available jobs for the supported employment team. What companies are currently, or may soon be, hiring in the Edgewater–­Uptown area for people with a high school education? Do these companies provide on-the-job training? Are company managers prepared to offer reasonable accommodations to employees with psychiatric disabilities? These are the kinds of questions that typically guide development activities of the supported employment team. Community data may be used in two ways. The first is to directly inform rehabilitation plans for individuals with disabilities living in particular communities. The second is to inform policy agenda for advocates in these communities. Strategies for the latter are largely beyond the strategic purview of rehabilitation service providers and hence are only briefly considered here. Chapter 3 provides a summary of important policy issues for rehabilitation team members. Two entities might be construed within the community, or the people, places, cultures, and institutions that make up the geographic locale in which a person with a psychiatric disability lives. These are the community per se and the service system. We discuss each of these in turn.

Domains of Community Assessment Several areas emerge as important measurement strategies for the community per se: task analyses; resources and support; prejudice and discrimination; and affirming attitudes and behaviors. Task analyses unpack the skills and requirements of specific goals, which might form the basis of skills training and education for the person, or reasonable accommodations for the community. Analyses might be also conducted for independent living and related goals, but research and development efforts have largely been lacking here. Related to this are community assessments that take stock of available resources. What supports, for example, might a company’s human resource department provide to help people avail reasonable accommodations? Communities that endorse prejudice about people with mental illness may discriminate against them. Employers who believe the stereotype that people with mental illness

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are incapable of real work are unlikely to hire them. Landlords who believe that people with mental illness are incapable of living independently are unlikely to rent to them. It is just as important to examine the opposites of prejudicial attitudes and discriminatory behaviors, which are affirming beliefs and affirmative actions (see Chapter 2). Affirming beliefs include public endorsement of the idea that people with serious mental illness should have personal empowerment, leading to self-­determination of life goals and service approaches. These correspond with affirmative behaviors, including reasonable accommodations. Hiring persons with psychiatric disabilities is not sufficient; employers need to provide reasonable accommodations, so that such persons can successfully fulfill their job duties. Reasonable accommodations are discussed more fully in Chapter 11. Job developers (as discussed more fully in Chapter 11) may use this kind of information to inform people about hiring priorities in different fields. For example, information from the U.S. Department of Labor might suggest that radiation technologists are in demand in certain metropolitan areas of the United States—­information that may be useful to people deciding on vocational programs in local community colleges. For the most part, however, this kind of information is more often used by policymakers seeking to understand and inform peers about broad trends. Many state labor departments provide information like this for area employers. For example, the Illinois Department of Employment Security provides summaries for up-to-date information on business employment dynamics, commuting patterns, employment projections, labor market review, and local area unemployment statistics—­information that area businesses might use in making decisions about new jobs and hiring people with disabilities for those jobs. An additional goal of this information is tracking jobs and employment services for U.S. military veterans.

Assessment of the Service System The service system is the second target of community assessment. Two aspects of service system are important, loosely construed at the administrative and service provider levels. At the administrative level, assessment seeks to determine the profile of distinct programs provided by agencies, and to compare it to the evidence base about effective interventions. Does, for example, a particular rehabilitation agency provide supported housing, education, or employment services for its participants? This can be assessed by administrative interviews, as well as an audit of actual provider activity. Related is agency adoption of the principles listed in Chapter 3 that characterize effective rehabilitation programs. For example, a body of instruments has emerged to determine whether agency leadership and service staff endorse recovery orientations that support person-­centered care (Davidson, Tondora, & Ridgway, 2010; Davidson, O’Connell, & Tondora, 2011; Osborn & Stein, 2016; Rosenberg, Svedberg, & Schön, 2015). Working against this kind of orientation is staff endorsement of the stigma of mental illness. Research shows that mental health providers can be among the most stigmatizing of professionals (Schulze & Angermeyer, 2003; Corrigan, Gause, Michaels, Buchholz, & Larson, 2014). Measures have emerged to assess this phenomenon as well. Two additional areas are assessed when staff providers are utilizing evidence-based programs: 1.  Fidelity assessment examines whether individuals are conducting interventions the way research suggests they should be conducted (Bond & Drake, 2020; Chinman et al., 2016). For example, are providers who offer supported employment doing the tasks

5. Assessment 91 

that constitute effective employment services as outlined in Chapter 11? An example of a fidelity scale for supported employment is provided later in this chapter. 2.  Evidence-based services do not necessarily reflect the cultural priorities of individuals receiving services. Hence, a second important domain is cultural competence and humility: whether providers are sensitive and responsive to the diversity concerns of people receiving services from them.

Putting It All Together: Development of a Recovery Plan Assessment of goals and strengths, as well as identification of barriers to them, is only worthwhile to the extent that the process yields strategies to help people achieve their aspirations. Development of rehabilitation plans requires integration of individual with community factors. Assessment informs the person and rehabilitation provider of available opportunities and resources in the community, as well as available services in local rehabilitation programs. Multiple service options are available for almost every conceivable rehabilitation goal that emerges in the individual assessment. Research evidence is often useful for identifying effective rehabilitation interventions. For example, research has mostly shown that supported employment is more effective than other vocational rehabilitation models such as sheltered work for helping people with psychiatric disabilities find and keep competitive jobs (see Chapter 11). Similarly, research indicates that social skills training is effective in helping people improve their interpersonal relationships. However, not everyone who participates in supported employment is successful in getting work, nor does everyone who receives social skills training improve relationships. Therefore, treatment planning requires not only understanding which interventions have been found to be effective for improving specific areas of functioning but also flexible, creative thinking to identify other ways of helping people achieve their goals when prominent EBPs are less than helpful, or to address areas of functioning for which EBPs do not yet exist.

Beware the Rigid Contract Some provider teams formalize a rehabilitation plan in a contract that specifies what is expected from team members in helping people pursue goals. A written summary can be a useful means of jointly understanding the plan, and of regularly reviewing it as actions move forward. However, the team needs to avoid sounding like a contract per se. Contracts suggest binding mechanisms meant to provide directions for moving forward once signed. Rehabilitation plans need to be constantly evolving documents. Locking people in at the point of signing the contract only constrains possibilities.

Monitoring Progress toward Goals A further function of assessment is to monitor progress toward rehabilitation goals and to modify plans as needed to address stubborn problems or emergent needs. It is hard to know whether individuals are benefiting from specific plans without monitoring their progress. For practitioners, this lack of information can either be demoralizing (e.g., they may believe they are not helping the individual) or misleading (e.g., they believe they are helping the person when they’re not). For the people with lived experience, failure to monitor progress toward goals implies that the treatment team does not view these goals

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as important. This can lead individuals to devalue the importance of their own goals, or can make them pessimistic about their ability to achieve specific priorities. Regular monitoring of goals, and modifying rehabilitation plans as needed, reinforces the importance of those goals as the basis for the therapeutic relationship (Bordin, 1979; Solomon, Draine, & Delaney, 1995; Wade, 2009).

Prioritizing Rehabilitation Planning Another function of assessment is to determine how rehabilitation needs might be hierarchically organized in terms of the immediacy to which needs must be attended: urgent matters, disability-­related needs, and rehabilitation needs.

Urgent Matters Urgent matters are issues that are so pressing they must be attended to quickly in order to protect the person or others. These are typically health, psychiatric, or housing issues. For example, it is essential to quickly respond to chronic medical conditions when they seem to flare up. Similarly, attending to impact is important when a person is seriously injured (e.g., in an accident or an attack). Urgent matters of a psychiatric nature typically involve threats to the self or others. Threats to the self may be deliberate (e.g., an actively suicidal person has either attempted suicide or is formulating concrete plans to do so) or unintentional (e.g., an individual is refusing to eat or engage in self-care because of delusions or gross disorganization). Psychiatric needs that are threats to others, such as paranoid delusions or command hallucinations instructing the person to hurt another, must be addressed. Urgent matters involving housing typically involve loss of shelter. Other housing issues may be less pressing but are nevertheless important for individuals who have experienced long bouts of homelessness and for whom housing is likely to have a destabilizing influence in their lives. Another urgent matter involving housing occurs when a person’s housing is threatened by strife with other people, such as family members, roommates, or landlords.

Disability-­Related Needs Disability-­related needs involve direct manifestations of the clinical syndrome(s) responsible for barriers to attaining goals. The nature and severity of specific psychiatric symptoms, relapses, and medication side effects are all clinical needs for which pharmacological management may be important. Although some degree of persistence in clinical symptoms is common in people with psychiatric disabilities, insufficiently treated symptoms or persistent side effects can interfere with the effectiveness of the rehabilitation and the goal of improving functional outcomes. For example, getting quick treatment may be important when an individual experiences early signs of a relapse or has actually experienced symptom exacerbation (Rush et al., 1999).

Rehabilitation Needs The distinction between disability-­related and rehabilitation needs is transparent, because rehabilitation services are often directed at helping people cope with or overcome the clinical effects of a psychiatric disorder on their functioning. For example, people may be troubled by recurring psychotic symptoms, which can interfere with daily functioning;

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rehabilitation efforts may be undertaken to minimize this interference and promote better coping. For practical purposes, the second level of the hierarchy of needs can be reserved for addressing symptoms or side effects due to suboptimal pharmacological treatment, while the third level (rehabilitation needs) involves addressing other clinical needs (e.g., coping with persistent symptoms) and working toward rehabilitation goals. There are few established guidelines for prioritizing rehabilitation goals. People might identify a wide range of possible goals, such as improving family relationships, improving personal illness self-­management skills, pursuing work or educational goals, overcoming substance use challenges, improving parenting skills, or acquiring more effective self-care and independent living skills. The best strategy is to focus first on those goals that people are most motivated to work toward, that they want to pursue, and that are closest to their personal recovery goals.

Making Sense of System Change The final goal of assessment considered here is to make sure that the community and system in which people live reflect priorities of recovery and self-­determination. Unfortunately, almost every service system in the United States lacks sufficient resources to support the evidence-based services and programs reviewed in this book. Hence, priorities need to be identified that are based on a clear picture of what is currently offered. Community assessment partly meets that goal at the macro level. In addition, community assessment has individual-level goals: What is needed and what is lacking in the community for the specific goals of people with lived experience?

CORE VALUES IN ASSESSMENT Several values are critical to the success of the assessment process. These include collaboration, SDM, person-­centered goal setting, and dynamism.

Collaboration Collaboration is essential to avoid the “do-it-to-’em” mistake of rehabilitation planning. Measurement, and the methods needed to collect the data reliably and validly, might unintentionally suggest an expertise level that exceeds the capability of the person with a psychiatric disability. As a result, rehabilitation providers might be viewed as “the authorities” because of their skills. This kind of “expertise” might yield unilateral plans for people with disabilities to approve. Plans might be reduced to a list of things done to people to help them achieve their goals. A rehabilitation plan in such a case might become an end in itself: The plan becomes a definitive “cookbook” for guiding a person toward recovery and goal achievement when these cookbooks do not exist. In fact, transition from rehabilitation assessment to plan, and then to implementation of that plan, is complex and dynamic. Transition begins with the individuals and their provider team making sense of assessment information together. The “truth” in this information emerges from the sense that people with their team make of the data. Active collaboration between provider team and person improves the likelihood of the person’s achieving rehabilitation goals by garnering their (and their family’s) support for working toward those goals. Collaboration also helps person, family, and provider team avoid working at cross-­purposes. The value of the corresponding rehabilitation planning is its

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ability to reflect fundamental aspects of the data—­t ypically issues such as goals, sense of hope, and personal achievement. This does not yield a one-stop, final solution, but rather an ever-­evolving effort to help people achieve aspirations.

Shared Decision Making SDM is a natural and prescriptive corollary to collaboration. Psychiatric treatment, like all medical care, has traditionally been delivered in hierarchical fashion in which providers instruct “patients” what to do. Over time, as options in general medical care increase and decision making has become more complex, there has been a movement toward sharing decision making between provider and service recipient (Braddock, 2010). Similarly, in psychiatric treatment and rehabilitation, there has been a shift toward SDM between providers and the people they serve (Alguera-Lara, Dowsey, Ride, Kinder, & Castle, 2017; Drake et al., 2010; Drake, Cimpean, & Torrey, 2022; Fukui et al., 2014). Accordingly, SDM is a central value of rehabilitation assessment. Rehabilitation providers strive to nurture the decision-­making capacity of the people with whom they work. SDM is a complex enterprise that is described practically and more fully in regard to illness self-­ management in Chapter 7.

Person-­Centered Goal Identification Personal preferences about rehabilitation goals are paramount. People with disabilities, like everyone else, differ in preferences for what is important. One person may place a high priority on returning to school or getting a job, while another may emphasize social relationships. Focusing on goals that are most important to people is the best way to enlist their involvement in goal setting and rehabilitation planning (Rudnick & Roe, 2011). Although establishing person-­centered goals are important, providers may also address concerns that may have a bearing on an individual’s personal welfare, but that the person does not prioritize. For example, Jon may not believe that his use of drugs and alcohol is a problem, but a provider may suspect that it interferes with his functioning, including areas that Jon wants to improve. Lindsay may believe that medication is not helpful, but a provider may be aware that she is more cognitively disorganized and prone to symptom relapses when she is not taking medication. During the assessment process, providers work to instill motivation on problems related to substance or medication use by exploring with the persons whether those (or other) behaviors interfere with attaining their goals. When people perceive that certain behaviors interfere with their goals, they often become motivated to change those behaviors. Instilling motivation in this fashion is referred to as motivational interviewing (Miller & Rollnick, 2023; Page & Tchernitskaia, 2014; Torres, Frain, & Tansey, 2019) and is discussed further in Chapter 16. Although SDM suggests a valued partnership between person and provider, the person’s preferences define the final plan. For example, if Lindsay and her team continue to disagree about the value of medication, and if Lindsay feels overwhelmed by side effects and sees no benefits, then medication is removed from the rehabilitation agenda. Key to person-­centered goals is regular assessment of the individual’s satisfaction with the current rehabilitation process. Figure 5.1 provides the Measure of Service Satisfaction (MSS) as an example of one assessment approach; it reflects perceptions as they are relevant to specific service providers. Figure 5.1 summarizes Isaiah Harper’s satisfaction with his job placement and support services at Waltown West Department Store as a

5. Assessment 95  Very satisfied 1

Equally satisfied and dissatisfied 2

3

4

5

Very dissatisfied 6

7

8

9

Name:  Isaiah Harper        Program:   Johnson Supported Employment Services Work site:   Waltown West Department Store Date:  May 1, 2022       Date:  August 3, 2022       7  Supervision

 7  Supervision

 6   Work breaks

 7   Work breaks

 6   Weekly salary

 7   Weekly salary

 2   Work accommodations

 5   Work accommodations

 3   Coworker relationships

 6   Coworker relationships

 7  Environment

 9  Environment

 8   Work hours

 7   Work hours

 6   Travel to work

 6   Travel to work

45

Total

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Total

Please add specific comments that will help us understand and address any of your ratings. May 1, 2022: Although Waltown supervisors mean well in terms of reasonable accommodations, they really do not know what this means or how to do it. I wish to have more friendly relationships with my coworkers. August 2, 2022: My supervisors and I have a much better sense of accommodations, including having my job coach meet me at the beginning of shift two days a week. I am practicing conversations skills during my weekly peer support group to build relationships with colleagues.

FIGURE 5.1.  Example of a rehabilitation assessment measure completed at two time points.

cashier. The Johnson Supported Employment Services (SES) Program is assisting Isaiah in that position. Isaiah has made ratings on eight items—­supervision, work breaks, weekly salary, work accommodations, coworker relationships, environment, work hours, and travel to work—at two different dates. Isaiah has rated his satisfaction on each of these items on a 9-point satisfaction scale, where a rating of 9 means “very satisfied.” A total score for each date has been determined by adding up satisfaction ratings for the eight items. Actually, the summary score per se might not be more useful than review of individual ratings. In this case, Isaiah expressed most dissatisfaction with work accommodations and coworker relationships. As can be seen in the MSS textbox, Isaiah elaborated on concerns saying Waltown management just did not know what or how to provide truly effective accommodations. As a result, the SES team member and Isaiah reviewed possible accommodations (e.g., extra breaks, quiet workplace, phone contacts with provider, morning visits with job coach) and thought morning visits might be good. The SES provider and Isaiah then included Isaiah’s direct supervisor in planning leading to an action plan. The 3-month reevaluation in August showed significant improvement in satisfaction with work accommodations.

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Dynamism At times, assessment can seem like a one-time, up-front process, in which goals and barriers are defined by the complex technology of assessment. Such perceptions can “lock” a person and rehabilitation team into a plan, despite subsequent events suggesting that major amendments to the plan are necessary. Shirley, for example, wants to complete an undergraduate degree so she can pursue a career in health care. Unfortunately, the full-time load of the first semester is daunting, even with assistance of her supported education team (see Chapter 11). She decides to reduce her course load to part-time in the spring semester but still finds the university’s culture stressful. She perceives other students as much younger; instead of being goal-­oriented and seeking careers, they seem more oriented to social life. Shirley drops out after a month. With feedback from family and the supported education program, Shirley decides to pursue a certificate program in radiation technology at the local community college. Shirley’s story is not an example of poor assessment, nor does dropping out of the university suggest failure! Rather, Shirley and the rehabilitation team are learning more about her goals in the real world over time. Ongoing assessment is bidirectional; the rehabilitation team provides relatively objective information about Shirley’s educational pursuit; “objectivity” is one of the strengths of evidence-based interventions. But the sum of the assessment process is subjective: Shirley repeatedly “tries on” the goals and strategies identified in the rehabilitation plan. This kind of trying out becomes more real over time in the person’s community. Effective rehabilitation is dynamic and evolving.

ASSESSMENT METHODS Methods for Assessing the Individual Several different methods are used to conduct rehabilitation assessment with an individual, including interviews with the person, self-­report questionnaires, obtaining information from others (e.g., family members, inpatient staff, and residential workers), role plays, and real-world observations. Each of these has advantages and disadvantages. The place to begin is “just ask them.” Ask people from the beginning what they need, want, and aspire to, and how a rehabilitation team will help. This is not, however, a start-up task only. Rehabilitation providers may regularly return to this basic question to make sure their plan corresponds with the ever-­evolving wishes of the person.

Interviews Interviewing involves more formally obtaining information about an individual’s needs and strengths by asking questions and engaging the person in conversations around specific topics. Interview-based approaches vary in degree of structure, ranging from unstructured formats to fully outlined approaches. An unstructured format is one in which the interview is organized around particular themes but is not necessarily governed by specific questions and follow-up probes. Semistructured and structured interviews differ mainly by how specific probe and follow-up questions are included as part of the interview. Structured interviews usually contain specific questions to elicit information about particular areas of functioning, and typically include follow-up questions as well. “Yes or no. Do you ever hear voices when no one else is around?” Semistructured

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interviews often provide guidance about initial and follow-up questions, without scripting the precise wording or constraining the interviewer to ask those questions: “Tell me about those times when you hear voices.” Unstructured interviews also differ from more structured interviews in coding responses. Information concerning an individual’s functioning is summarized descriptively in unstructured interviews, whereas semistructured and structured interviews usually provide quantitative methods for summarizing information. For example, in the Structured Clinical Interview for DSM-5—Clinician’s Version (SCID-5-CV; First, Williams, Karg, & Spitzer, 2016), an instrument for establishing psychiatric diagnoses, specific symptoms are rated on a 3-point scale (1 = not present, 2 = not clear, 3 = definitely present). A psychiatric diagnosis is established through identification of specific symptom benchmarks, as well as determination of other factors that may also explain symptoms (e.g., substance use). In other structured interviews, quality of specific aspects of social functioning or severity of psychiatric symptoms is often rated on a fixed scale, with low numbers representing better functioning or less severe symptoms. Structured interviews have a number of advantages over unstructured ones. First, specific questions diminish differences among interviewers due to style or specific wording. Eliminating such differences improves the precision of the assessment. Second, structured interviews tend to be more comprehensive than unstructured interviews, because they are designed to tap different areas of functioning related to rehabilitation. This specificity is difficult to achieve without providing clear guidelines to the interviewer. There are also disadvantages. More training is usually required to learn how to use structured or semistructured interviews. Structured interviews also constrain the interviewer with their focus on particular areas of functioning to the exclusion of others; these interview formats may limit ability to delve into other areas of functioning, some of which may be important to the person. In addition, structured interviews are not available for assessing every area of functioning; unstructured formats may be required to understand functioning in more “innovative” areas. In view of these advantages and disadvantages, effective rehabilitation assessment usually involves a combination of unstructured and structured interviewing.

Self-­Report Questionnaires Self-­report questionnaires are usually a paper-and-­pencil or computer-based series of questions about symptoms, functioning, or satisfaction in particular domains. Many such questionnaires have been developed to obtain information from people with disabilities, family members, and/or service providers. Responses to these questions are provided in either yes–no or continuum formats, such as a 4-point scale ranging from 1 (not a problem) to 4 (severe problem). Similar to the data obtained in structured interviews, the quantitative data gathered in self-­report questionnaires can be summarized to provide an index of functioning in a particular area. Self-­report questionnaires are used to evaluate personal functioning in a wide range of areas. For example, distress related to depression, anxiety, or health concerns can easily be rated with self-­report questionnaires. These scales have also been used to assess family perspectives on needs and provider attitudes that might undermine services. Self-­report questionnaires are efficient because they only require providers to give respondents instructions and to score the questionnaires (although additional time may be needed to explain unclear questions to respondents). Self-­report questionnaires can be used in group settings, since everyone

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can complete the questionnaires at the same time. These kinds of questionnaires can be especially useful as an alternative to directly asking people about behaviors that may be perceived as undesirable. For example, research has shown that individuals are more likely to acknowledge use of drugs and certain sexual behaviors (e.g., LGBTQ) when completing a computer-based self-­report assessment than when responding to a live interviewer (Turner et al., 1998). Despite these advantages, self-­report questionnaires have disadvantages. Written self-­report questionnaires require good reading skills, which some respondents lack. Computer-­administered questionnaires can provide a solution to this by stating questions aloud, although these devices are not routinely available in many rehabilitation settings. Self-­administered questionnaires provide limited opportunities to correct misunderstandings that may arise when a person is completing a questionnaire, because there is little interaction with the provider. Some areas of functioning may also be more difficult than others for individuals to rate. For example, psychotic symptoms, especially delusions, are difficult to assess with self-­report questionnaires, as are other forms of cognitive impairment. Finally, some persons may be reluctant to report socially undesirable behaviors even on self-­report questionnaires. For example, respondents often underreport use of drugs and alcohol (Barbee, Clark, Crapanzano, Heintz, & Kehoe, 1989), high-risk sexual behavior (Cournos & McKinnon, 1997), and medication use (Weiden, Mott, & Curcio, 1995).

Obtaining Information from Others People are sometimes not accurate observers of their own behavior. Accuracy of self-­ observation may be further compromised by cognitive impairments or altered perceptions of reality (e.g., psychotic symptoms). As an alternative, some information about people’s disabilities may be obtained from an “other” who knows them well, such as a family member, friend, or treatment provider. Information from others is generally obtained through interviews that may vary in their degree of structure. Once again, structured interviews with others have advantages over unstructured ones, including eliciting information in standardized ways and yielding quantitative data that can be used for treatment planning and outcome evaluation. However, because significant others and clinicians tend not to be privy to people’s internal “private” experiences, assessments from others are limited to areas of functioning that are directly observed. Measures with others can be used to judge an individual’s social appropriateness, degree of connection and association with peers, work performance, independent living skills, substance use, and leisure time. Assessments from others also provide an independent perspective on a person’s functioning, which can be useful in understanding how individuals fit into their social context. Still, an independent perspective is not necessarily more objective; others may have personal biases that may distort information in particular ways. For example, ratings from others may be influenced by their desire to portray the individual with psychiatric disability in a positive or negative light, depending on the nature and quality of their relationship. Another advantage of assessments from others is the potentially greater awareness other informants may have of social norms within the community in which the person lives. Some individuals with psychiatric disabilities have significant difficulties in social cognition (Green, Horan, & Lee, 2015; Hasson-­Ohayon et al., 2015) that include the inability to perceive and understand common social conventions. Not understanding social norms can prevent individuals from accurately rating their own social functioning with respect to community norms. Information from others may bypass this problem.

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There are additional disadvantages to information from others. Some people with psychiatric disabilities are unable to identify others who can provide information about their functioning. Even when such others are identified, contacting them may be difficult or require multiple efforts. In addition, some people with disabilities may be unwilling to identify other persons who can be contacted. People might feel talked about or otherwise find this intrusive in situations in which rehabilitation providers fail to handle this sensitively. Information from providers’ observations may be somewhat easier to obtain, because their jobs involve working with people, and they are therefore easier to identify and contact. It may be difficult to enlist their cooperation because of the limited provider time, however. In addition, rehabilitation providers vary greatly in their knowledge of persons’ functioning in the community and thus may be able to provide only limited amounts of information.

Role Plays Role plays or situational assessments are evaluations conducted under simulated life interactions. For example, role-play tests are often used to evaluate social skills by seeing how an individual performs in a contrived social interaction (Bellack, Mueser, Gingerich, & Agresta, 2004; Liberman, 2008; Park, Ku, et al., 2011). In such a test, a person might be instructed to “pretend that you have just met an acquaintance on the bus to work. Strike up a friendly conversation based on things you read in this morning’s newspaper.” Several standardized measures of social skills and problem solving have been developed and validated for persons with psychiatric disabilities (Bellack, Brown, & Thomas-­ Lohrman, 2006). Situation-based assessments of work performance involve evaluating an individual in either a simulated work situation or an actual work-­related interaction (Bond & Friedmeyer, 1987). The person’s performance can then be evaluated, providing detailed information about specific skills and problems related to functioning in those areas. Rehabilitation efforts focus on those areas identified in the assessment. Role-play and situational assessments have the advantage of providing much more detailed information about specific strengths and areas of impairment than other assessment methods may produce. This can be helpful in rehabilitation planning, since greater specificity can result in more focused rehabilitation efforts. The primary disadvantage of these types of assessments is that they are time-­consuming; many mental health practitioners lack not only the time but also the resources and skills to perform such assessments. Thus, such assessments of functional abilities are often not conducted in routine rehabilitation practice but may be included in research on rehabilitation programs.

Real-World Observations Following people into their actual environments and watching how they respond to different situations can provide additional valuable information. There are coding schemas that observers can use to describe behaviors precisely; for example, one set of measures tracks specific behaviors in specific settings at specific times (Paul, 1986, 1987). However, like role-play measures, these types of efforts can be labor-­intensive. Alternatively, a job coach may shadow a person in the work setting to observe strengths and barriers to targeted goals that the person sets up for themself. Carefully written and specific progress notes on such observations provide useful information for the whole rehabilitation team, as well as the person with disabilities.

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SPECIFIC MEASURES FOR THE DOMAINS OF ASSESSMENT This section covers specific measures and strategies for assessing the domains of functioning summarized in Table 5.1. For each domain, we first discuss its relevance to psychiatric rehabilitation, then describe the nature of the domain, followed by examples of specific assessment strategies and instruments. These are divided according to individual and community assessment factors.

Assessing Individual Factors Diagnosis and symptoms often come first in this kind of list, because they seem to reflect the nature of psychiatric in the idea of psychiatric rehabilitation. They have, however, been moved far down the list in our text, because such a focus is not consistent with the priorities of recovery and the people it serves. For instance, many people live with unchanging psychotic behaviors but still have individually meaningful needs and goals. Hence, both the list of domains in Table 5.1 and this section begin with consideration of measures that assess needs and goals. Success in achieving these goals is influenced by strengths, the second item in the list of domains; assessment of strengths is followed by assessment of the potential for recovery, empowerment, and hope. Strengths are juxtaposed with functioning and disabilities, which frequently define barriers to personal goals. Achieving goals despite disabilities defines quality of life or general well-being— the degree of personal life satisfaction given the person’s current state of needs and challenges. People seek out services with some sense of what they want. Next in the list is consideration of factors that influence treatment decision making. Readiness for change is one such factor. Many people with serious mental illness are challenged by traumas that also need to be included in assessment.

Needs and Goals The fundamental question of rehabilitation assessment is “Why are people seeking assistance for their psychiatric disabilities?” People seek services believing it will help them achieve their goals. Hence, the place to begin is with understanding each person’s goals, in the long term as well as the short term. Immediate goals (e.g., getting admitted to a college program and then completing its 4-year curriculum) often precede more longterm ones (e.g., obtaining a vocation that is personally meaningful and generates a good income). Assessment is in some ways a process of helping the person understand the domains in which goals are possible. These may include intimate relationships and other friendships; education, vocation, and income; housing; mental and physical health and wellness; faith-based communities; recreation; citizenship; and interactions with law enforcement (Milyavskaya, Nadolny, & Koestner, 2014). Assessing needs and goals help people sort out various costs and benefits of aspirations. Together, these reflect the person’s sense of satisfaction with varied domains. They also help the person establish some sense of priorities (e.g., “I will put off moving to a bigger apartment until I get through my college program”). The Needs and Resources Assessment (NARA) is one measure that provides an opportunity for persons to pair needs with available resources (Corrigan, Buican, & McCracken, 1995, 1996). The NARA is administered as a face-to-face interview in which participants are asked open-ended questions to identify specific needs in 13 domains (e.g., “What housing needs do you have?”). The person is then asked follow-up resource

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questions for each identified need (e.g., for housing: “You said you needed a new apartment. What resources do you have to help you obtain this apartment?”). The open-ended questions are followed by standardized questions, to which the person responds on a 7-point scale: “How satisfied are you with each domain?” and “How important is each need?” The Camberwell Assessments of Need constitute several measures of the needs of various groups of people seeking services: elderly persons (Reynolds et al., 2000), pregnant mothers with mental illness (Howard et al., 2007), persons involved with the courts (Thomas et al., 2003), and people with intellectual disabilities (Xenitidis, Slade, Thornicroft, & Bouras, 2003). The basic instrument, the Camberwell Assessment of Need (CAN), is a comprehensive 22-page assessment of needs, supports, and satisfaction with 22 domains of life experience, a profile that mostly parallels the dimensions of life experience listed at the beginning of this chapter in the section “Assessment of Needs and Goals” (M. Phelan et al., 1995; Slade, Phelan, Thornicroft, & Parkman, 1996). Typically, the CAN is completed in face-to-face interviews between rehabilitation provider and service recipient. There is a brief version of the test—the Camberwell Assessment of Need, Short Appraisal Schedule, Patient (CANSAS-P)—that is two pages long and can be self-­administered as a pencil-and-paper task. It represents perceived need in each domain. Needs assessments, as the term is used here, are typically more descriptive than outcome measures. They are used to provide a profile of priorities to which strengths, resources, and interventions are matched. Still, some measurements of needs include indices of whether needs have been met. The Medical Research Council (MRC) Needs for Care Assessment, for example, includes scales representing whether needs have been met at some subsequent period (Brewin & Wing, 1993). Values like these can be used to determine whether specific rehabilitation plans have helped people reach their goals. They can also be used as overall program evaluation instruments by looking at mean change of goals for a group’s participation in specific interventions.

Strengths People with and without disabilities begin the pursuit of goals with a sense of their strengths. As stated in Chapter 1, although discussion of symptoms and dysfunctions helps a rehabilitation provider better understand the challenges a person is facing, this kind of discussion frames people as victims of their disabilities without recognizing their positive assets. Although affect is frequently distressed in psychiatric illness, people with psychiatric disabilities may have several strengths in this domain. Among others, emotions provide the color to life that motivates individuals to act against their symptoms and achieve their goals. People with psychosis also often experience diminished perceptual and cognitive abilities. But despite these limitations, they frequently have the abilities to understand problems and brainstorm solutions, as well as to perceive interpersonal situations correctly. Among the greatest strengths a person with disabilities may draw upon is motivation. Despite hurdles thrown up by symptoms and dysfunctions, the person wants to achieve work, independent living, relationships, and other goals. Symptoms and dysfunctions often interfere with interpersonal relationships; nevertheless, most people with serious mental illness have family or friends on whom they might rely. Alternatively, rehabilitation providers or peers with psychiatric disabilities are also frequently available to step in for support and companionship. Although strengths-based programs have become an emerging principle of contemporary rehabilitation, little has been done toward crafting measures meant to promote

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assessment of personal strengths. One standardized instrument is the Adult Needs and Strengths Assessment (Christopher, 1998) and its Abbreviated Referral Version (Nelson & Johnston, 2008). The latter is a 16-item measure completed by a knowledgeable other, typically a service provider. The first 12 items are 5-point scales representing problems with, among other things, impulse control, depression/anxiety, substance abuse, danger to self, or sexually inappropriate behavior. The remaining items ask about strengths related to medication compliance, social skills, relationships, and problem solving. Unfortunately, the focus on symptoms does not seem to capture the sense of strengths as represented in the strengths model. Charles Rapp is one of the most eloquent advocates of strengths-based approaches. Rapp and Goscha (2011) offer a Strengths Assessment, an open-ended measure in which participants juxtapose current strengths (e.g., talents, skills, other personal strengths, and environmental strengths) with individual desires/aspirations and past resources. This information can be completed on a pencil-and-paper measure or be used as the foundation of a face-to-face interview. Strengths are meant to reflect home and daily living, assets and finances, education and employment, relationships, health and wellness, leisure and recreation, and spirituality. Participants are then asked to prioritize their strengths. No research has been published on the measure. Still, ample guidance is provided regarding how to use this information to promote discussions among persons and providers about personal abilities that might be used to promote goals.

Recovery, Empowerment, and Hope Although recovery is not synonymous with strengths, recovery is hailed as the first principle of the modern mental health system. In Chapter 1, two definitions of recovery were reviewed. First, recovery is described as an end point; this definition reflects ample research suggesting that many people with even the most serious disabilities can live with, or even overcome, challenges to achieve personal goals. Alternatively, recovery is a process in which the self-­determined pursuit of goals is evidence of recovery itself. Factor models of recovery describe it in terms of several constructs, including a sense of personal confidence and hope for the future, a willingness to ask for help, an orientation toward goals and success, a reliance on others, and a view of self that is not dominated by symptoms. As suggested by this factor structure, recovery reintroduces personal empowerment and hope as central constructs for individuals with psychiatric disabilities. Empowerment includes notions of personal control, action, sharing, dignity, and equity (Barnes & Bowl, 2017; Clark & Krupa, 2002; Rogers, Ralph, & Salzer, 2010). Hope is also key to promoting health and wellness, especially in people struggling with disabilities over time. Measures of recovery, empowerment, and hope are often paper-and-­pencil or interview measures. Several instruments assess recovery; indeed, two large reviews of such measures have been published in the last few years (Shanks et al., 2013; Scheyett, DeLuca, & Morgan, 2013; Williams et al., 2012). The Recovery Assessment Scale (RAS; Corrigan, Salzer, Ralph, Sangster, & Keck, 2004) is most often cited, with a separate review summarizing the breadths and depths of this measure (Salzer & Brusilovskiy, 2014). Although several versions of the RAS have emerged, Salzer and Brusilovskiy focused on the 24-item scale. The measure has been self-­administered in either paper-and-­pencil or computerized formats. The RAS generates an overall score plus five subscale scores: Personal Confidence and Hope, Willingness to Ask for Help, Goal Orientation, Reliance on Others, and Not Dominated by Symptoms. The RAS seems to be a sensitive measure of individual recovery change; hence, it is often used in program evaluation.

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Although several measures of empowerment also emerge in the literature, few reviews of these measures have been found. The Empowerment Scale is one oft-cited measure (Rogers, Ralph, & Salzer, 2010). Like the RAS, the Empowerment Scale can be self-­administered or incorporated into an interview. The 28-item version yields four subscales: Self-­Efficacy, Perceived Power, Optimism about and Control over the Future, and Community Activism. Although the scale has good reliability and validity, research is unclear about its sensitivity to change. A broader research literature examines issues of empowerment from the perspective of self-­determination, which represents the degree to which people have autonomy and control over their goals and strategies to pursue those goals. Self-­determination theory (SDT) is a broader social-­psychological model that describes personal motivation across the areas of human behavior discussed more in Chapter 15 (Deci & Ryan, 2012; Van den Broeck, Ferris, Chang, & Rosen, 2016). Applications of SDT to health and wellness have been an especially important focus (Williams, Deci, & Ryan, 1998). The Treatment Self-­Regulation Questionnaire (Levesque et al., 2007; Ryan et al., 1995) is a set of measures examining why people engage in some healthy behaviors, enter treatment, change healthy behaviors, follow treatment regimens, or engage in some other health-­ relevant behaviors. Within this questionnaire is the Treatment Motivation Questionnaire (Ryan, Plant, & O’Malley, 1995), specifically developed for people in an alcohol treatment program. It assesses levels of psychological internalization for entering and staying in services. Although SDT and corresponding measures are potentially rich resources for rehabilitation providers, only one questionnaire specifically reflecting agendas of people with psychiatric disabilities has been found in the literature. The Intrinsic Motivation Inventory was adapted by Choi, Mogami, and Medalia (2010) to address issues pertinent to people with schizophrenia. The adapted version is a 21-item measure that addresses three domains relevant to motivation for treatment: interest/enjoyment, perceived choice, and value/usefulness. Hope is central to recovery and empowerment, being one of the domains in the RAS. Psychologists have developed sophisticated models of hope, defining the construct as perceived capability to define pathways for obtaining goals and motivating oneself via agentic thinking (Corrigan, 2014; Duncan, Jaini, & Hellman, 2021; Snyder, 2002). Hence, hope is a relevant object of study. The Herth Hope Index emerged from nursing as a commonly used measure of hope (Benzein & Berg, 2003; Herth, 1992). It is a 50-item measure that yields a single overall score representing the person’s hope.

Functioning and Disabilities Serious mental illness often causes disabilities in social and vocational functioning that undermine the pursuit of goals, recovery, and hope. Good social functioning and associated social support may be beneficial for several reasons. First, good relationships with others help give people meaning in life, reasons to live, and motivation to take care of themselves. Second, social support can buffer the negative effects of stress, making individuals less vulnerable to stress-­induced relapses. Third, having close relationships with others provides opportunities for reality testing, which may be especially beneficial for individuals with occasional psychotic symptoms. Evidence suggests people with better social functioning and greater levels of social support experience a more benign course of their mental illness (Bybee, Mowbray, Oyserman, & Lewandowski, 2003; Harandi, Taghinasab, & Nayeri, 2017; Sono et al., 2012; Wells, Miranda, Bruce, Alegria, & Wallerstein, 2004). Thus, improving social support is an important goal for

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rehabilitation, and the assessment of social functioning is critical to evaluating the success of those efforts. SOCIAL  FUNCTIONING

Interview-based methods are often useful for assessing an individual’s social functioning, especially when individual interviews can be supplemented by information from significant others. Many measures of social functioning provide specific subscale scores. For example, the Social Adjustment Scale II (Schooler, Hogarty, & Weissman, 1979) provides subscale scores for the following dimensions of social functioning: Family, Extended Family, Friends, Romance, and Leisure/Recreation. Aside from interview-based instruments that delve specifically into different dimensions of social functioning, other instruments provide a more general assessment of the adequacy of an individual’s functioning in the community or in some more specific context (e.g., residence). General functioning scales, such as the Multnomah Community Ability Scale (Barker, Barron, & McFarlane, 1994; Bassani et al., 2009; Gerber, 2011), are often completed by providers who are privy to information about the individual’s functioning; these scales are less time-­consuming to complete, because they do not require direct interviews. General measures of functioning are also relatively easy to administer and can provide a useful summary of an individual’s functioning in the community. However, global summaries are often unsuitable for pinpointing specific areas in need of rehabilitation. Although other detailed assessment instruments may be time-­consuming, they may be useful in yielding more specific information that can serve as a basis for identifying and planning rehabilitation needs. Role functioning refers to whether individuals are able to meet the expectations of socioculturally defined roles, such as worker, student, parent, or spouse/partner. Role functioning is often included as a dimension of social functioning, and is strongly related to the quality of social relationships. It is useful to distinguish role functioning from the quality of social relationships, as impairment in the former area of functioning is critical to the definition of disability. Despite prominent difficulties experienced in the areas of school, parenting, and spousal/partner relationships, there is a dearth of well-­established instruments for evaluating functioning in these domains. VOCATIONAL  FUNCTIONING

Some aspects of vocational functioning are relatively easily assessed, while others are more challenging. The assessment of work is probably most direct. Work can be measured by obtaining information such as the type of job an individual holds, wages and benefits paid, number of hours worked, and satisfaction with the job. Work history may be similarly obtained, including prior jobs, longest duration of competitive employment, wages and hours worked at last competitive job, and reasons for job termination. These measures are readily obtained through direct interview with the individual. Some structured interviews of social functioning also contain questions concerning work performance, such as the Work and Social Adjustment Scale (Pedersen, Kvarstein, & Wilberg, 2017). Observational measures of the quality of vocational functioning have also been developed, such as the Work Behavior Inventory (Lysaker, Bell, Bryson, & Zito, 1993). Observational measures like these rely on another individual to complete them, such as the employer; therefore, the use of these measures is limited to vocational settings where people have disclosed disabilities to their employers.

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SELF-CARE AND INDEPENDENT LIVING  SKILLS

Difficulties in caring for oneself and living independently are major problems for many individuals with psychiatric disabilities who may require extensive supports from treatment providers and family members. Indeed, impaired self-care skills are incorporated into the diagnostic criteria of some psychiatric disorders, such as schizophrenia. For these reasons, improving self-care and independent living skills is an important priority of many rehabilitation programs. One instrument for assessing these skills is the Independent Living Skills Survey (Liberman, 2008; Wallace, Liberman, Tauber, & Wallace, 2000). This measure includes both person and provider (or significant other) versions and assesses a wide range of specific behaviors related to self-care and independent living. Many other instruments for measuring community functioning also tap some independent living skills, such as the Social and Adaptive Functions Evaluation (Harvey et al., 1997) and the Multnomah Community Ability Scale (Barker et al., 1994).

Quality of Life Absence of social dysfunctions does not make for a satisfactory life. The concept of quality of life includes enjoyment and appreciation of different aspects of living; it is less concerned with specific psychopathology and impairments that characterize psychiatric disorders (Huxley, 1998). A wide range of instruments have been developed for the measurement of quality of life, with most including both objective and subjective perspectives. Objective measures of quality of life overlap considerably with measures of community functioning, such as quality of social relationships (Connell, O’Cathain, & Brazier, 2014). In some cases, quality-of-life measures overlap with symptom measures as well. For example, the Quality of Life Scale (Heinrichs, Hanlon, & Carpenter, 1984) is strongly related to negative symptoms (Bellack, Morrison, Wixted, & Mueser, 1990), and the overall scale may be better conceptualized as a measure of the deficit syndrome of enduring negative symptoms (Carpenter, Heinrichs, & Wagman, 1988; Mueser, Douglas, Bellack, & Morrison, 1991) than as a conventional quality-of-life measure.

Treatment Decision Making In Chapter 7, we distinguish between adherence and self-­determination when considering treatment decisions. A sizable literature has examined measures of treatment adherence, which are reviewed here. In addition to the measures of self-­determination discussed earlier, decision making related to intervention is often examined in terms of readiness for change. Instruments to assess this construct are reviewed in the next section. As discussed in Chapter 9, medication is one powerful intervention for psychiatric disabilities, having a significant impact on reducing symptoms and preventing relapses in individuals with serious mental illness (Schatzberg & Nemeroff, 2009). Medication decisions may be challenging however, with more than half of people not administering medication as prescribed at some point in their illness (Bible, Casper, Seifert, & Porter, 2017; Marrero, Fumero, de Miguel, & Peñate, 2020). Given that not taking medication may be an important contributor to relapse and rehospitalizations (Zygmunt, Olfson, Boyer, & Mechanic, 2002), addressing decision making about medication is a common goal for psychiatric rehabilitation. Several costs and benefits may have an impact on medication decisions. Many medications for serious mental illness have undesirable effects that go along with their beneficial effects (Chapter 9). The side effects of such medications can

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be uncomfortable and in some cases dangerous. In addition, medication side effects may contribute to decisions not to use them. Although side effects are common, many options are available for their management. However, in order to address this problem effectively, side effects must first be detected. Therefore, medication side effects are often routinely assessed in individuals receiving pharmacological treatment for their psychiatric disabilities. These assessments are usually conducted by the physicians or nurse practitioners who are prescribing the medication. Although different classes of psychiatric medications tend to have common side effects, each medication group has its own unique profile measures of side effects (Ashoorian, Davidson, Rock Gudka, & Clifford, 2014; Schnittker & Do, 2020). Two widely used scales for measuring antipsychotic side effects are the Extrapyramidal Side Effects Questionnaire (Simpson & Angus, 1970) and the Abnormal Involuntary Movements Scale (National Institute of Mental Health [NIMH], 1975). Almost all approaches to measuring actual medication use have their limitations, with more accurate approaches being more time-­consuming. The most accurate methods for assessing medication use involve either pill counts or electronic medication cap devices. For pill counts, people are requested to bring medications to clinical visits, where providers simply count the number of pills in each bottle of prescribed medication. The extent to which more pills are present than would be expected from the prescribed dosage and frequency is an indicator of not using medications. Although an individual can easily subvert this technique by taking out pills and throwing them away, such attempts to conceal medication use seem to be rare. However, obtaining an accurate measure of medication use from pill counts can be difficult for many reasons, including free samples; noncountable forms of medication, such as inhalers, eye drops, or insulin vials; and medications given at a regular dose but with instructions including a limited number of “take as needed” (p.r.n.) administrations. An electronic cap records the number of times a cap is taken off a medication bottle, and hence might be an alternative, reliable measure of medication use. This approach is expensive, however, especially for most people with psychiatric disabilities who are prescribed multiple types of medication. Many people use weekly pillboxes to organize their medications, for which electronic devices have not been developed. Direct interviews with people about their medications can be helpful but accuracy may be questionable. It can be assumed that reports of not taking meds are relatively accurate if people indicate that they do not routinely take their medications. However, reports of consistent medication use are not necessarily accurate. An alternative to direct questioning about use is to inquire indirectly about personal attitudes toward the medication. Some research indicates that negative attitudes toward medication (e.g., the belief that they are not beneficial) may be more strongly related to medication decisions than direct self-­reports of use are (Kukla, Salyers, & Lysaker, 2013; Pratt, Mueser, Driscoll, Wolfe, & Bartels, 2006; Richardson, McCabe, & Priebe, 2013). Reports of significant others can also provide useful information about medication use, although veracity of these reports depends on the amount of contact with the person, as well as the significant others’ biases. For example, treatment providers may overestimate use because they believe that people are doing as they are told and following instructions to take medication. Blood levels of some medications can be taken. For example, an important part of monitoring the lithium for a bipolar disorder is to check blood levels regularly to prevent high toxic levels from developing. A very low level of lithium could indicate the person is not using it. However, blood levels cannot be used to monitor most medications, either because guidelines for therapeutic levels do not exist or because

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tests are expensive. In practice, assessment of medication use is similar to assessment of social functioning and substance use: A combination of individual reports, significant others’ reports, and behavioral observations provides the most accurate determination. Still, rehabilitation providers should use measures of use with caution. As discussed in Chapter 7, adherence may be a limiting way of viewing treatment decisions. It suggests a “right” way to use medication, which implies that failure to adopt the “right” prescription is a failure of the person. Self-­determination is more consistent with a rehabilitation perspective. People with disabilities must be the ones who set their medication-­related goals. Hence, the value of use measures resides in provoking conversation between a person and provider, in order to set an ongoing plan to help the person achieve goals.

Readiness for Change “One of the harshest pronouncements professionals make to people with severe psychiatric disabilities and their family members is some variation of ‘You are not ready for rehabilitation’ ” (Cohen, Anthony, & Farkas, 1997, p.  644). This seems to call for definitive measures of rehabilitation readiness that can distinguish those who will benefit from rehabilitation versus those who will not (Ferdinandi, Yoottanasumpun, Pollack, & Bermanzohn, 1998). Most rehabilitation providers, however, agree that this approach is wrongheaded. A better question is “Ready for what?” Instead of across-the-board statements about whether a person can or cannot benefit from rehabilitation, more effective approaches seek to understand readiness for specifics: What exactly does the person want to pursue now? As mentioned briefly in Chapter 16, the transtheoretical model and its stages of change offer a useful framework (Hutchison, Breckon, & Johnston, 2009; Migneault, Adams, & Read, 2005; Norcross, Krebs, & Prochaska, 2011). When paired with motivational interviewing, rehabilitation assessment seeks to identify costs and benefits of individual goals. Gervey (2010), for example, developed a Vocational Counseling version of the University of Rhode Island Change Assessment (URICA-VC), a 32-item measure that sorts respondents into four stages of change for vocational rehabilitation: precontemplation, contemplation, action, and maintenance. Alternatively, a Stages of Change Interview has been developed and is reproduced in Figure 5.2. Readiness assessments and stages of change depend on specific goals. A person’s readiness to address housing priorities might differ from readiness to address work goals. Hence the Stages of Change Interview is grounded by goals. In the assessment in Figure 5.2, Henry is wondering about moving away from his parents’ home into an apartment of his own. The rehabilitation provider begins by simply asking whether he is ready to pursue the goal: “Henry, are you ready to find an apartment and move out?” People who say “yes” list activities in which they are engaged to accomplish their goal. For example, someone might respond, “I have met with a peer supporter, identified an area in town to move to, and found funds to pay for the move.” Henry, however, has said “no” to the readiness question. In this case, the rehabilitation provider asks for the pros and cons of moving out. Henry lists several benefits, which include being able to decorate the place as he likes, inviting friends over freely, and listening to music he likes, all in an atmosphere where he is not arguing with his father. However, Henry also notes problems with this decision: He worries that he might be lonely and anxious living alone; he needs to figure out how he will get money for rent; and he is concerned that he may only be able to afford to live in a high-crime neighborhood. Henry’s task here, with the provider’s assistance and support, is to weigh

II.  Rehabilitation Strategies

108 Name:

Henry Lopez

Date:

September 21, 2022

Specific goal: Move into my own apartment Do you want to pursue this goal right now?

Yes What are you doing about it?

List activities here:

Number of months participating in activity If less than 6 months in activity: Action stage If more than 6 months in activity: Maintenance stage Have you slipped in the past month? If yes: Relapse stage

No What are its pros and cons?

Pros

Cons

Decorate as I like Fight less with Dad

Afraid of being alone Get money for rent Unsafe neighborhood?

Do the pros outweigh the cons? If no pros to change: Precontemplation stage

?

If cons > pros: Contemplation stage

?

If pros > cons: Determination stage

FIGURE 5.2.  Example of a completed response form for the Stages of Change Interview.

costs and benefits to determine whether he is ready to take action to move into his own apartment. This kind of analysis is not easy. Henry does not just add up pros versus cons and determine which side is more heavily weighted. Instead, the rehabilitation provider might ask Henry, after he is done with his list, which of the pros and cons is most important. Let’s suppose Henry says that while he would like the freedom of his own place, he is very concerned about being lonely. Thus, given the perceived weight of all the pros and cons—­especially the most important ones—does he perceive that it is worthwhile to act on his goals? Perceived pros and cons define stages of change. People who identify no pros to changing a goal are in the precontemplation stage; they are not even thinking about it. This would be Henry if he said, “There is no reason why I would want to move out. Everything is fine.” People who perceive more cons than pros are in the stage of contemplating change but are not yet ready. This might be Henry as a result of the information in Figure 5.2: He sees a few benefits to moving out but is a bit hesitant right now to act on it. If Henry, on the other hand, were to believe that the benefits of moving out outweigh the risks, then he might be ready for action; he would be in the determination stage. The next step would be for the rehabilitation provider and Henry to consider different actions for investigating apartment options. The benefits of the Stages of Change Interview thus

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extend beyond assigning Henry to a stage; it also helps Henry and his rehabilitation team understand barriers to moving ahead on a goal. In Henry’s case, he and his provider now know that if Henry wishes to act on moving into his own apartment, they need to consider ways to address his possible loneliness and the other potential problems.

Diagnosis and Symptoms DIAGNOSIS

A psychiatric diagnosis may have important treatment indications for individuals with psychiatric disabilities (see Chapter 1). It may be related to identifying medications that are likely to reduce symptoms and prevent relapses (Lally & MacCabe, 2015). Diagnostic information may also be helpful in identifying psychosocial approaches to services. Some types of psychotherapy have been developed to address symptoms and functioning in specific diagnostic groups. For example, cognitive-­behavioral approaches have been supported in delusional disorders, such as schizophrenia and schizoaffective disorder (Kingdon & Turkington, 2005, 2022) Both self-­report questionnaires and standardized interviews may be used to diagnose psychiatric disorders. For example, self-­report questionnaires, which are often useful for screening individuals for certain disorders, are followed up with interviews to confirm a suspected disorder. The Psychiatric Diagnostic Screening Questionnaire (Zimmerman & Mattia, 2001a, 2001b) was developed to screen across psychiatric disorders for a variety of clinical populations (e.g., persons presenting for treatment at medical settings, substance abuse treatment settings, and mental health centers), and has been shown to be strongly predictive of diagnoses based on structured interviews (Zimmerman & Mattia, 2001c; Zimmerman, Sheeran, Chelminski, & Young, 2004). Consensus in the field, however, suggests that interviewing an individual is necessary in order to firmly establish a psychiatric diagnosis, and that this often needs to be supplemented with information provided by significant others, such as family members or other treatment providers. In the United States, the clear “gold standard” for assessing diagnosis is the SCID5-CV, mentioned earlier in this chapter (First et al., 2016). Although the original SCID measure is still widely used in psychiatric research, briefer versions such as the SCID5-CV (First et al., 2016) have been developed to aid in the diagnosis of psychiatric disorders in specific clinical settings. The measure provides clinicians comprehensive instructions on how to use the SCID-5-CV effectively and accurately. As they have been for clinical disorders (e.g., disorders classified on Axis I in DSMIV), semistructured interviews have been developed to diagnose personality disorders (formerly classified on Axis II in DSM-IV and DSM-5). In addition to these interview instruments, numerous self-­administered tests have been developed that measure different dimensions of personality, both in general and clinical populations. These include the Revised NEO Personality Inventory (Costa & McCrae, 1992), the Millon Clinical Multiaxial Inventory–III (Millon, Millon, Davis, & Grossmann, 1994; Craig, 2008), and the Minnesota Multiphasic Personality Inventory–2 (Butcher, Dahlstrom, Graham, Tellegen, & Kaemmer, 1989; Drayton, 2009). These self-­administered tests are not considered further here, because their relevance for rehabilitation of persons with psychiatric disabilities remains to be determined.

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SEVERITY OF PSYCHIATRIC  SYMPTOMS

Diagnosis is not equivalent with severity of psychiatric symptoms. One person diagnosed with schizophrenia can have significant hallucinations, while another has no evidence of hearing voices. Severity can also change within the person; one person hears voices of her dead mother when psychosis is acute, but these voices remit altogether when psychosis wanes. Symptom assessments provide one important outcome by which to measure the success of psychiatric treatment and rehabilitation. Although treatment and rehabilitation efforts may not eliminate psychiatric disabilities altogether, they may be successful at reducing severity and some of the personal suffering associated with them. Therefore, it is important to be able to assess symptom severity, in order to identify whether a person needs help managing symptoms and to evaluate whether interventions are successful in reducing their harm. A wide range of instruments has been developed to evaluate the severity of psychiatric symptoms. In general, these instruments are divided into self-­report and interviewbased strategies. Self-­report measures often provide valid measures on the severity of mood problems in persons with psychiatric disabilities. The Beck Depression Inventory– II (BDI-II; Beck, Steer, & Brown, 1996; Beck, Steer, & Carbin, 1988; Wang & Gorenstein, 2013) has been shown to be a very accurate measurement of depression. However, self-­report instruments are less useful for measuring psychotic symptoms or negative symptoms. Self-­report instruments that query people about frequency and distress associated with psychotic symptoms, such as the Symptom Checklist–90—Revised (Derogatis, 1977; Müller, Postert, Beyer, Furniss, & Achtergarde, 2010), tend to produce general measures of distress but not independent measures of the severity of psychotic symptoms. Psychiatric rating scales based on semistructured interviews have been developed in order to provide an objective measure of common symptoms. These scales vary from 20 to 50 specifically defined items, each rated on a severity scale with 5 to 7 points. Some scales have been developed to measure the full range of psychiatric symptoms, such as the Brief Psychiatric Rating Scale (Lukoff, Nuechterlein, & Ventura, 1986; Leucht et al., 2005) and the Positive and Negative Syndrome Scale (Kay, Fiszbein, & Opler, 1987); others have been designed to tap specific dimensions, such as the Scale for the Assessment of Negative Symptoms (Andreasen, 1984; Rabany, Weiser, Werbeloff, & Levkovitz, 2011) and the Hamilton Depression Rating Scale (Hamilton, 1960; Zimmerman, Martinez, Young, Chelminski, & Dalrymple, 2013). Interview-based psychiatric rating scales typically include a combination of symptom ratings elicited through direct questioning and symptoms observed in the course of the interview. For example, depression is rated on the Brief Psychiatric Rating Scale by asking questions such as “What has your mood been lately?” and “Have you been feeling down?” Item responses can either be added up for an overall index of symptom severity or summarized in subscale scores corresponding to symptom dimensions such as negative, positive, and affective symptoms.

Substance Abuse Substance use disorders are among the most common comorbid disorders for people with psychiatric disabilities (see Chapter 16). Substance use has a wide range of different effects, including relapses and rehospitalizations; legal, economic, and family problems; and increased vulnerability to infectious diseases (Drake & Brunette, 1998). Because people with psychiatric disabilities are more likely to experience adverse consequences of

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using small amounts of alcohol and drugs, instruments developed for detecting substance use in the general population tend to be of limited value (Carey & Correia, 1998; Corse, Hirschinger, & Zanis, 1995). In recent years, a number of instruments have been developed specifically to assess substance use disorders. These include screening instruments, diagnostic instruments, descriptive instruments, and measures of engagement and progress in substance use treatment (Bo, Hai, Chen, & Hammock, 2021; Ezard et al., 2011).

Trauma Many people with psychiatric disabilities are more likely to experience traumatic events throughout their lives, both before and after onset of their mental illness (Goodman, Rosenberg, Mueser, & Drake, 1997). As discussed in Chapters 1 and 3, traumatic events such as physical and sexual assault can have a devastating effect on people’s lives, and include triggering relapses and hospitalizations in people with major mental illness (Goodman et al., 2001). In addition, exposure to traumatic events may lead to specific syndromes that are associated with high levels of suffering and distress, such as PTSD (Brady, Kileen, Brewerton, & Lucerini, 2000; Breslau, 2002). Many different instruments have been employed for assessing trauma exposure and PTSD in people with psychiatric disabilities. Most of these come from research conducted in the general population, with some adaptations (Goodman et al., 1999; Meyer, Muenzenmaier, Cancienne, & Struening, 1996; Lenz & Luo, 2019; Mueser et al., 2001). In many settings, a brief trauma screen and a self-­report checklist of PTSD symptoms are sufficient to identify people likely to have a diagnosis of PTSD. A screening assessment should be followed up with a direct interview. Although self-­report questionnaires alone cannot be used to establish a diagnosis of PTSD, they can be very useful for monitoring the effects of treatment.

Assessing the Community Assessment strategies reflecting community-level factors—the community per se and the service system—are less developed than for individuals. In part, this situation reflects the lingering notion that psychiatric disability is an individual’s problem and so is addressed by understanding the individual. As providers realize that the bidirectional nature of services best promotes recovery and goal attainment though rehabilitation, the profession will develop and test better measures of community. With that said, there are strategies for measuring the domains of assessment outlined in Table 5.1. Some are relatively new, while others have a better record of evaluation. These methods are reviewed here in regard to the community per se and the service system. Some are discrete assessments, like many of the paper-and-­pencil measures reviewed in the discussion of individual assessment measures. Many, however, are strategies suggesting how key concepts of the community might be measured.

Assessing the Community Per Se Most people seek goals embedded within their community; therefore, making sense of goals in terms of specific community contexts is one important step in assessment. The broad term for this process is task analysis, or job analysis, when specifically applied to the employment sphere. Moreover, just as a person has resources and supports that facilitate the pursuit and attainment of goals, so the community needs to furnish resources and supports. Strategic assessment may help to identify available resources and supports,

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as well as directions for future development. Assessment of community prejudice and discrimination that undermine the pursuit of goals has a fair-size research literature. Moreover, community endorsement of affirming attitudes has also generated measures, though assessment of affirming behaviors is less formalized. Truly macro-level assessments such as economic indicators and government activity have clear relevance for affecting personal goals, but this arena is new and not well developed. TASK  ANALYSES

Task analyses are a family of strategies that define specific roles in particular contexts, in order to inform people about benefits of these roles. Task analyses, for example, may be done so that a person better understands the demands of specific employment positions or housing options. Job analyses are task analyses specifically intended to help persons with vocational goals. Although rehabilitation providers have touted the advantages of job analyses (Brodwin et al., 1992; Rubin & Roessler, 2008), this assessment approach has largely emerged from industrial/organizational psychology (Brannick, Levine, & Morgeson, 2007). A job analysis answers several questions: Why does a job exist? What physical and mental activities does the worker need? When and where is the job performed? What qualifications are needed for the job? These questions may be answered through questionnaires and interviews with people in these positions, as well as their supervisors. Observation of workers on the job also provides useful information (Aggarwal & Thakur, 2013). At present, rehabilitation providers seem to accomplish this task informally. For example, why might people placed at the local discount store on Main Street be quitting their jobs after a short time? Job analyses might reveal some unexpected aspects of this work setting such as starting time or amount of interaction with customers. RESOURCES AND  SUPPORTS

Community assessment seeks to identify resources of which people with disabilities are unaware. For vocational goals, this means a list of businesses that have actively provided accommodations to people with disabilities. Job developers often have this kind of informal list: “I know the discount chain store on Main Street is receptive to hiring and working with people with mental illness.” Rehabilitation programs, especially in large urban areas, may have more formal databases that list businesses “friendly” to the goals of people with mental illness. Most area chambers of commerce are partnered with local versions of the U.S. Business Leadership Network (www.usbln.org); these networks are groups of employers coming together to meet the needs of people with disabilities who wish to return to work. Parallel to this effort is the need for current information regarding job openings. This usually requires multiple informational sources, including various news outlets and local job agencies hosted by state or city governments. Community assessment of two other types of resources may be helpful. Many cities and towns, especially their parks and recreation departments, provide recreational and other civic activities that are relevant to people with psychiatric disabilities. This may include rehabilitation providers who are on mailing lists where calendars of events are posted. In addition, rehabilitation teams should acquire some sense of the extent of the accommodations that cities and towns provide to people with disabilities. Faithbased communities are an additional source of support and resources for many people with disabilities. Again, rehabilitation providers should obtain a list of nearby mosques,

5. Assessment 113 

synagogues, temples, and churches, as well as specific contacts within those communities who seem friendly to the goals of people with disabilities. PREJUDICE AND  DISCRIMINATION

As discussed in Chapter 2, the public often endorses stereotypes about people with mental illness that are related to prejudice about such people, resulting in discrimination (Corrigan, 2005). The short version of the Attribution Questionnaire is a nine-item scale that assesses the degree to which the public believes people with mental illness are dangerous or responsible for their illness (Corrigan, Watson, Warpinski, & Garcia, 2004; Corrigan, Powell, et al., 2014). The scale provides indices of fear, anger, pity, and discrimination. As also discussed in Chapter 2, relatives of people with mental illness are often victimized by stigma (Moses, 2014); however, measures of courtesy stigma are not well developed. AFFIRMING ATTITUDES AND  BEHAVIORS

Erasing stigma is not enough; the public needs to endorse affirming attitudes such as recovery, empowerment, and self-­determination. We discussed assessment of these concepts in regard to individuals earlier in this chapter, but there are brief scales of affirming attitudes for the public as well. Called the Recovery Scale (Corrigan, Salzer, et al., 2004), the Empowerment Scale (Rogers, Ralph, & Salzer, 2010), and the Self-­Determination Scale (Michaels et al., 2014), these three- and four-item scales are brief assessments of the degree to which a specific group endorses these ideas. One might expect that an employer scoring high on the Recovery Scale is more likely to hire a job candidate with a psychiatric disability, and that a psychiatrist scoring high on the Self-­Determination Scale is more likely to partner with people in the development of their medication plans.

Assessing the Service System The term service system refers to a complex and interlocking set of providers, programs, and entitlements meant to help people with psychiatric disabilities achieve their goals. These include psychiatric rehabilitation programs that are especially oriented to the vocational, housing, and health needs of their service recipients. Sometimes a single agency has programs meant to address the array of goals; more commonly, a group of agencies works together to provide a cogent and effective rehabilitation plan. Regular assessment of the service system is essential to accomplishing individual goals. This assessment includes regular summary of resources and priorities in the local community. As suggested earlier, at a minimum, this should be a regular audit of existing services and specification of their priorities, service areas, and cost structures. As reviewed, measuring satisfaction with these services is useful here. In addition, the evidence-based programs described in this book typically have well-­specified manuals defining the steps needed to benefit people with disabilities; as described here, fidelity assessments are strategies to determine whether providers are implementing programs as intended. Moreover, because recovery is the unifying principle of rehabilitation and seems to be the energizing force behind development of contemporary programs, recovery assessments have been developed for providers and administrators. These measures examine the extent to which recovery is embraced by specific agencies, as well as whether commensurate interventions are in place to help people achieve their recovery goals.

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Many programs have limited impact because they fall short in terms of cultural relevance; hence, yet another important assessment domain described here is cultural competence (see Chapter 4). Finally, programs may fall short because mental health providers unintentionally endorse the stigma of mental illness, undermining rehabilitation goals as a result (e.g., “Harry shouldn’t try to live on his own. He just got out of the psychiatric hospital and will relapse in his own apartment”). PROGRAM  SATISFACTION

Although assessments of program satisfaction are completed by individuals with psychiatric disabilities, such assessments reflect the service system and provide valuable information for system change (Sohn, Barrett, & Talbert, 2014). Typically, these instruments are pencil-and-paper measures on which people report their satisfaction with various domains of service: specific interventions, settings, providers, and relevance to personal goals (Corrigan, 1990). For example, a measure might ask, “How helpful are the providers in your supported education program?” Respondents might answer this and similar items on a 7-point scale (1 = not at all, 7 = very much). Two cautions about interpreting these data: The first has to do with who administers such a measure. Scores may differ when satisfaction scales are given by providers rather than peers. People provide less candid response when providers for that program administer a satisfaction survey (Gill, Pratt, & Librera, 1998). Hence, satisfaction ratings may be more effective when measures are administered by the people who are receiving services. The second caution has to do with a “halo effect.” People who engage in services for prolonged periods of time, even services with challenges, are likely to report them positively. They do not want to disrespect peers and providers with whom they have interacted for a long time. Unfortunately, viewing everything as positive prevents program evaluators from identifying aspects of service that are in need of adjustment. One way to avoid this problem is to ask a respondent to compare the program of interest to another program in which the person has been involved (Corrigan & Jakus, 1993). For example, Ms. Jones might be asked, “For this exercise, I want you to compare the 4th Street Housing Program to another place you have lived—let’s say the Mortenson Rehab Center. On a 7-point scale, how do staff members at Fourth Street compare to the Mortenson Rehab Center staff?” The goal here is not to identify a “bad” program to be eliminated or “unsatisfactory” staff members to terminate but rather specific directions for change, which may require additional training or reallocation of agency resources. FIDELITY TO EVIDENCE-BASED  PROGRAMS

Fidelity instruments are typically checklists on which an observer documents whether component aspects of an EBP are being implemented as specified in the manual (Bond, Drake, McHugo, Rapp, & Whitley, 2009). SAMHSA’s National Repository of EvidenceBased Programs and Practices (NREPP) typically lists whether a specific EBP has a fidelity measure; note that SAMHSA ceased the NREPP portal in 2019 during the Trump administration. Most of the interventions described in this volume have fidelity assessments. Table 5.2, for example, provides two of the 25 items that assess fidelity in the implementation of individual placement and support (IPS; discussed fully in Chapter 11), an EBP for supported employment (Bond, Drake, & Becker, 2012, 2020). The fidelity scale groups criteria that correspond with key ingredients of IPS: staffing, organization, and services. The two items in Table 5.2 represent caseload size and staff specialization.

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TABLE 5.2.  Sample Items for the Individual Placement and Support (IPS) Model Fidelity Scale Criterion

Data source

Anchors

1.  Caseload size: Employment specialists have individual employment caseloads. The maximum caseload for any full-time employment specialist is 20 or fewer clients.

OBS, DOC, INT

1 = ratio of 41 or more clients per employment specialist. 2 = ratio of 31–40 clients per employment specialist. 3 = ratio of 26–30 clients per employment specialist. 4 = ratio of 21–25 clients per employment specialist. 5 = ratio of 20 or fewer clients per employment specialist.

2.  Employment specialization: Employment specialists provide only employment services.

OBS, DOC, INT

1 = employment specialists provide employment services less than 60% of the time. 2 = employment specialists provide employment services 60–74% of the time. 3 = employment specialists provide employment services 75–89% of the time. 4 = employment specialists provide employment services 90–95% of the time. 5 = employment specialists provide employment services 96% or more of the time.

Note. OBS, observations including team meetings or shadowing employment specialists; DOC, document review (including intervention records, as well as agency policies and procedures); INT, interviews with clients, providers, or employers.

Fidelity scales specify anchors representing the degree to which each item is achieved. Caseload size ranges from having more than 41 in a caseload (scored 1) to an ideal situation of having 20 or fewer clients (scored 5). Employment specialization anchors range from a low in which less than 60% of those doing IPS are employment specialists (scored 1), to a high in which 96% or more of specialists are providing IPS (scored 5). Fidelity scales also specify sources for obtaining the data. For example, caseload can be judged by reviewing treatment records, interviewing people who are being served, or observing team meetings. Although there are strategies for fidelity self-­assessment (e.g., in which employment specialists evaluate the fidelity of their own IPS program), most experts believe that some independent source (an outside observer) needs to check for fidelity as well (Bond, 2013; Bond & Drake, 2020; McGrew, White, Stull, & Wright-­ Berryman, 2013). Fidelity ratings provide useful information for adjusting programs: They indicate what specifically needs to be changed to achieve the positive outcomes found in earlier research. For example, let’s say that fidelity ratings of the Mortenson Supported Employment Service find caseloads exceeding 35, giving it a low fidelity score. In this case, Mortenson’s administrators will need to reconsider job responsibilities and program enrollments to yield better ratios. CULTURAL COMPETENCE AND  HUMILITY

As discussed in Chapter 4, research consistently shows that large segments of the population are left out of rehabilitation services because programs, and the staff members providing them, are not sensitive to the cultures of people they serve. Several measures

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have been developed to assess cultural competence in three areas: understanding that values and beliefs of individual providers influence perception of culture; knowledge that cultures and world views differ; and skills that promote culturally sensitive communication and interventions (Stanhope, Solomon, Pernell-­A rnold, Sands, & Bourjolly, 2005). Paper-and-­pencil instruments are typically administered to providers to get a sense of individual cultural competence. The Cross-­Cultural Adaptability Scale, for example, is a 50-item measure that focuses on components of intercultural effectiveness, such as openness to new ideas, cross-­cultural empathy, and nonjudgmental attitudes (Kelley & Meyers, 1992). There is some concern about measuring cultural competence through self-­ report measures, however (Stanhope et al., 2005); providers may be unwilling to offer honest responses that might portray them as less than culturally competent. Feedback from service recipients can provide useful additional information.

SUMMARY AND CONCLUSIONS Assessment for rehabilitation planning is a complex process that involves delving into many areas. Effective assessment is crucial to identifying the most important rehabilitation goals and prioritizing those goals. Familiarity with each domain is needed, since major problems in any one can impede progress toward rehabilitation goals. At the same time, one provider is unlikely to have all the expertise needed to assess every domain. Teamwork, which is necessary for performing a comprehensive assessment, involves not only contributions of a multidisciplinary group of providers but also active collaboration with people and their significant others. Sharing the responsibilities of assessment and planning, and incorporating ongoing assessment into monitoring progress, will ensure that goals and rehabilitation are jointly agreed upon and modified as needed over time.

CHAPTER 6

Erasing Stigma and Promoting Empowerment

E

rasing the harmful effects of mental illness stigma has become a major public health agenda (Rüsch, 2023). Nationwide programs have been launched in Australia, Canada, and several member states of the European Union (Thornicroft et al., 2022). Antistigma programs from 14 countries in the Americas, Africa, Asia, and Europe founded the Global Anti-Stigma Alliance (GASA; http://antistigma.global) in 2012 as a platform for exchange. The U.S. government’s efforts are largely led by SAMHSA. These programs have served as laboratories for identifying and developing interventions meant to replace the stigma of mental illness with affi rming attitudes. Three approaches are reviewed in this chapter: strategies (1) for persons with psychiatric disabilities to challenge self-stigma and promote empowerment; (2) for advocates to erase public stigma and enhance community integration; and (3) for the community to replace social structures that promote discrimination with ones that foster affi rmative action.

CHALLENGING SELF-STIGMA Five approaches to addressing self-stigma have been developed and researched, along with evidence about their efficacy and effectiveness (Alonso, Guillén, & Muñoz, 2019): 1. Self-stigma has been framed as a set of irrational cognitive schemas resulting from internalized prejudice. Cognitive therapy has been used to challenge the irrational self-statements that emerge from these schemas. 2. Self-stigma can be seen as factually wrong, since the conviction that “I must be incompetent, because I have a mental illness” is not based on facts. Therefore, psychoeducational approaches have been used to educate people with mental illness about their condition and thus reduce self-stigma. 3. Self-stigma can be associated with a negative, deficit-focused biographical story people tell about themselves. Therefore, narrative strategies have been developed to help people develop more positive, recovery- centered stories about themselves. 117

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An intervention that combines narrative and cognitive elements is reviewed in this chapter. 4. Self-­stigma may be influenced by a person’s decision about whether to disclose their mental health experience. Strategic approaches to making the decision and to disclosing are reviewed. 5. Fostering personal empowerment reduces self-­stigma. Each of these five strategies is reviewed more fully below.

Facilitating Change in Self-­Stigmatizing Cognitive Schemas Self-­stigma may be understood as a group of maladaptive self-­statements or cognitive schemas that have developed largely as a result of socialization: A person first learns mental illness prejudice, and subsequently internalizes it when the person is labeled as having a mental illness. Interpersonal differences in cognitive schemas may help explain why, given the same social situation, one person feels significantly “stigmatized”; a second may not feel stigmatized; and a third is motivated to act against the stigma. The adverse effects of stigma are “located” not only in the social situation but also in the cognitive processes of the stigmatized individual—that is, an individual’s perceiving and understanding the social situation in such a way that disrespectful messages emerge (Rüsch, 2023). As summarized in Chapter 13, cognitive therapy has been shown to be an effective strategy for helping people change cognitive schemas that lead to anxiety, depression, and other consequences of self-­stigma. Although some readers may be concerned that people with serious psychiatric disorders might not benefit from cognitive therapy, British researchers have documented its benefits for psychotic disorders (Kingdon & Turkington, 2019). This approach targets distressing psychotic symptoms and maladaptive understandings of mental illness within a collaborative empirical framework. A therapist helps a person explore their distressing and often delusional cognitions—­attempting to reframe them as beliefs rather than facts, empathetically discussing how the person might have arrived at such beliefs (but also recognizing their emotional costs), reviewing evidence for and against the beliefs, and trying to find less distressing alternative interpretations (Agbor et al., 2022). The cognitive approach has been expanded beyond the content of psychotic symptoms by also targeting the person’s catastrophic interpretation of the (self-)stigma and shame associated with mental illness. In this view, a self-­stigmatizing cognition (“Because I have a mental illness, I must be stupid!”) can be questioned, and evidence for and against this negative self-­concept can be gathered. This approach sounds plausible but, unfortunately, two controlled trials failed to show any positive effects on self-­stigma: Cognitive therapy was not superior to stigma-­related psychoeducation (Wood, Byrne, Enache, & Morrison, 2018) or to standard treatment (Morrison et al., 2016). Based on these findings, cognitive strategies alone are unlikely to effectively diminish self-­stigma and its consequences.

Reducing Self-­Stigma by Psychoeducation Similar to education as a strategy against public stigma (discussed later in this chapter), education or psychoeducation has been used to reduce self-­stigma. The underlying idea is that self-­stigma is a negative, destructive myth and can be replaced with factual information. For example, if a woman believes that she must be stupid because she has a mental

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illness, this could be corrected by pointing out the fact that many people with mental illness at all levels of society are very intelligent. Lucksted et al. (2011) have organized these strategies into a group-based intervention meant to diminish self-­stigma. Called Ending Self-­Stigma, the program comprises nine sessions and includes lectures, discussion, sharing, skills practice, problem solving, and group support. An RCT compared standard treatment to Ending Self-­Stigma and showed positive intervention effects only in some measures of self-­stigma, and none of these effects remained significant at follow-up (Lucksted et al., 2017). A more recent trial compared Ending Self-­Stigma to a general health and wellness psychoeducation that was not related to stigma; there was no intervention effect on any self-­stigma measures after the program or at follow-up (Drapalski, Lucksted, Brown, & Fang, 2021). A large German trial compared stigma-­related psychoeducation to non-­stigma-related psychoeducation: Among 462 participants with psychosis or depression there was no positive effect of stigma-­focused psychoeducation on self-­stigma (Gaebel, Zäske, et al., 2020). Based on these findings, there is no evidence for psychoeducation as a promising strategy to reduce self-­stigma.

Narrative Approaches Our self-­concept is influenced by the stories we tell ourselves about our lives, our perceived achievements and failures, struggles with disability and recovery, experiences of (self-)stigma and shame, ways we find meaning in suffering and illness, and so forth. Therefore, narrative approaches support participants to develop a more empowering, less deficit-­focused story of their lives and help them to find meaning in their history and their future. Narrative enhancement and cognitive therapy, developed by Phil Yanos, Paul Lysaker, and David Roe in the United States and Israel, integrates narrative, psychoeducational, and cognitive strategies to reduce self-­stigma; it is a group program and comprises 20 sessions. A number of controlled trials found positive effects of the program on self-­stigma (Roe et al., 2014; Yanos, Roe, West, Smith, & Lysaker, 2012; Yanos et al., 2019).

Deciding Whether to Disclose The marks that specifically signal mental illness are frequently not apparent to the public. Unlike race and gender, for example, mental illness usually includes few externally manifested cues signaling that an individual belongs to the stigmatized group. Put another way, people with mental illness may be able to escape some of the harm caused by both public stigma and self-­stigma by not letting other people know that they belong to this stigmatized group. One way to avoid stigma is by not disclosing one’s experience with mental illness and mental health services. Concluding, however, that it is best to conceal one’s psychiatric history suggests that disclosure yields only harm with no benefits. In reality, neither the definition of disclosure nor its comparative costs and benefits are clear (Quinn, 2018). Moreover, there are few completed studies of disclosure in regard to either mental illness stigma or the self-­prejudice experienced by other stigmatized groups. Despite this limitation, some conclusions can be drawn from the empirical literature about the nature of disclosure in other stigmatized groups. After a brief review of this literature, we discuss the variety of disclosure options from which a person might select, as well as the costs and benefits of these options.

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Understanding the Impact of Disclosure Individuals with a concealable stigma may vary in the ways they choose to disclose. To whom people selectively disclose usually depends on the setting, but frequent candidates for disclosure include family members, friends, professional helpers, and/or others with the same concealable stigma (Quinn, 2018). Disclosure and nondisclosure can have advantages and disadvantages that depend on the social context and on the person who decides (not) to disclose. Disclosure can lead not only to stigma and discrimination, but also to social support and increased authenticity, and can facilitate help-­seeking (Pachankis, 2007; Quinn, 2018). Nondisclosure or secrecy, on the other hand, can protect people from stigma, but it can be a burden if people fear that others will find out; it can lead to social isolation and makes seeking help more difficult. One study showed that people who recognized benefits of being “out” were less likely to experience self-­stigma undermining their quality of life (Corrigan, Morris, et al., 2010). A study among unemployed people with mental health problems assessed their attitudes toward disclosure at baseline: Those who did want to disclose to potential employers were less likely to have found a new job 6 months later, underlining the risks of disclosure (Rüsch et al., 2018). In the same study, on the other hand, those who were comfortable with disclosing to family and friends had better quality of life 6 months later (Rüsch et al., 2019). Thus, disclosure is neither good nor bad, but its consequences depend on the context.

Different Levels of Disclosure Disclosure varies in several ways. Table 6.1 summarizes five levels of disclosure: social avoidance, secrecy, selective disclosure, indiscriminate disclosure, and broadcasting of one’s experience (Corrigan & Lundin, 2001). The costs and benefits of each of these types of disclosure decisions are also reviewed in Table 6.1. One way to handle disclosure is social avoidance. Persons can accomplish this by avoiding situations where the public may find out about their mental illness; instead, they associate only with other persons who have mental illness. In this way, they can avoid members of the “normal” population who may disapprove of their disabilities. Unfortunately, there are several disadvantages to social avoidance. Persons who choose to avoid the “normal” world lose out on all the benefits it brings: free access to a broader set of opportunities, and citizens who support their experience with mental illness (Corrigan & Lundin, 2001). Moreover, social avoidance in some ways promotes stigma and discrimination: It endorses the idea that persons with mental illness should be kept away from the rest of the world. There is no need to avoid work or community situations to keep one’s experiences with mental illness secret; secrecy is the second way of handling disclosure. Many persons choose to enter these situations but not to share their experiences with others. They keep all aspects of their psychiatric experiences—both the impact of their illness and the interactions with the mental health system—­private. Such persons may need to fill in some gaps in their past and current experience. Employment résumés may have blank years when they were hospitalized or otherwise unable to work. Consider, for example, Tamiko’s experience: For 2 years, between discharge from the Navy (where she served in computer operations) and her 26th birthday, she had been in and out of hospitals for depression. Instead of leaving these years blank on her résumé, she wrote, “Advanced training in computers.” When asked during job interviews what this training meant, she truthfully discussed the adult education courses she had completed in systems

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TABLE 6.1.  Five Ways to Disclose or Not Disclose 1. Social avoidance The individual altogether avoids persons and places that may stigmatize or otherwise disrespect the person because of their mental illness. Benefit: The person does not encounter others who will unfairly harm them. Cost: The person loses the opportunity to meet new people who possibly may be supportive. 2. Secrecy The individual does not tell people at places where they work or live about their mental illness. Benefit: As in social avoidance, the person withholds information from others they do not know or trust. But the person does not have to avoid important settings like work or the community in the process. Cost: Some people feel guilty about keeping secrets. 3. Selective disclosure The individual tells some people they believe will be supportive about their mental illness. Benefit: The person finds a small group of people who will understand their experiences and provide support. Cost: The person may disclose to some people who will hurt them with the information. The person may have difficulty keeping track of who does and does not know. 4. Indiscriminate disclosure The individual is not concerned with who knows about their mental illness. The person tells anyone they encounter when the topic comes up. Benefit: The person does not worry about who knows about their problems. And the person is likely to find people who will be supportive. Cost: The person is likely to tell people who will hurt them with the information. 5. Broadcasting of experience The individual purposefully communicates their experiences with mental illness to a large group. Benefit: The person does not have to worry about who knows about their history of mental illness. They are promoting a personal sense of empowerment and are striking a blow against stigma. Cost: The person can encounter people who may try to hurt them with this information. They are also going to meet people who disapprove of the political statement.

management during these periods. She did not, however, talk about how these courses were interspersed with psychiatric hospitalizations. Keeping experiences with mental illness secret prevents persons from availing themselves of the support and resources of possibly empathetic others if these friends and/or colleagues learn of the illness. Hence, many people decide to selectively disclose their experiences with mental illness stigma—that is, to disclose to a limited number of other people. However, choosing to disclose only to some people has its risks. Those who find out may shun the persons after disclosure; that is, the targets of disclosure may decide that they do not want to work with, live near, or otherwise associate with “mental patients.” With the risk comes opportunity, however. Persons who disclose may find that their targets are supportive. Moreover, individuals with mental illness will not have to worry about keeping their secret when near those to whom they have disclosed. Also, the decision to disclose to someone does not mean that one must tell everything; choosing to disclose does not have to result in giving up all privacy. This includes decisions about

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one’s past experiences with mental illness, as well as current encounters with the mental health system. Still, selective disclosure means that there are some people with whom information is shared and others from whom information remains a secret (Corrigan & Lundin, 2001). More than likely, the group of those who are not privy to the secret is much larger than the group of those who are informed; in this case, there remain a large number of people of whom the individuals with mental illness need to be wary. People who choose indiscriminate disclosure abandon the secrecy. They no longer worry about who finds out about their mental illness or treatment history. People choosing this option are relieved of the burden posed by keeping part of their lives underground. Although they are no longer trying to hide their mental illness, individuals opting for indiscriminate disclosure are not actively seeking ways to inform others about their psychiatric experiences. Broadcasting one’s experience means educating people about mental illness. This method has the same benefits as indiscriminate disclosure. Moreover, people who choose to broadcast seem to derive an additional benefit: It fosters their sense of power over the experience of mental illness and stigma. This kind of consciousness raising may help both the person and others understand that problems with mental illness are not solely a function of biological limitations; society’s reactions are also to blame. Shouting this out diminishes community oppression. In fact, many people who choose to broadcast their experiences wish to surpass the limited goal of talking about their mental illness. They also want to express their dissatisfaction with the way they have been treated because they have a mental illness. Broadcasting experiences will yield hostile responses, as will indiscriminate disclosure. Members of the general public hearing someone’s story about mental illness frequently battle both the message and the messenger. Civil rights leaders have experienced such reactions for decades; challenging messages from racial groups outside the mainstream about economic inequality and political injustice upset the status quo. In a similar manner, talking about one’s mental illness and displeasure with society’s reaction is disquieting. Citizens without mental illness may rebel against the messenger with angry denials. Once again, individuals opting to broadcast their experiences need to evaluate whether they are able to cope with the angry responses. Some persons who choose to broadcast their experiences join advocacy groups for support and guidance. The influence of these kinds of groups is discussed more fully in the section “Fostering Personal Empowerment.”

Considering the Costs and Benefits of Disclosure As suggested in the preceding discussion, there are both costs and benefits to disclosing one’s experiences with mental illness (Corrigan & Lundin, 2001; Quinn, 2018). Given this list of positive and negative outcomes, the choices of whether and, if so, how to disclose are not decisions that all people stigmatized with mental illness should pursue in a set manner. Some people first carefully consider all the benefits of choosing to disclose their mental illness, listing as many as they can think of. They then write down the costs. Others just start writing down costs and benefits as these come to mind until they are all listed. Frequently, cost and benefit columns are divided into short- and long-term sections. The impacts of costs and benefits are sometimes relatively immediate and at other times delayed. Generally, people tend to be more influenced by short-term costs and benefits; however, long-term costs and benefits frequently have greater implications for the future. Costs and benefits also vary by situation: Disclosing is significantly different at

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work than it is with neighbors or softball teammates. A person could conceivably decide to tell persons at work but not in the neighborhood, or to tell close friends but not their pastor or other religious leader. Hence, the costs and benefits of disclosing need to be listed separately for each setting. The Honest, Open, Proud program (formerly known as Coming Out Proud) is a standardized program meant to help people challenge the self-­stigma of mental illness (Corrigan, Kosyluk, & Rüsch, 2013; Rüsch & Kösters, 2021; Scior, Rüsch, White, & Corrigan, 2020). Led by people with mental illness, this four-­session program helps participants consider the pros and cons of disclosing, levels of disclosure from social avoidance and secrecy to broadcasting as outlined earlier, relatively safe ways of coming out, and formats for telling their stories, followed by a booster session. A meta-­analysis of five RCTs showed significant benefits of Honest, Open, Proud in terms of reduced stigma stress and self-­stigma (Rüsch & Kösters, 2021). Disclosing a mental illness is a difficult decision to make alone. Since there are so many factors to take into consideration, it is hard for one person to weigh the pluses and minuses calmly and rationally. Hence, some individuals may want to consider the judgment and advice of others before plunging into disclosure. Family members may be good sources of advice. They may understand the benefits of disclosure and provide emotional support through the process. Friends with mental illness, especially those who have disclosed their status themselves, may offer positive advice or possibly warnings, depending on their experience with disclosing a mental illness. Those who are advocates and have succeeded in organizations like NAMI will probably advise persons to tell. Those who have had failures on account of disclosure, such as loss of a job or failure of a marriage, might tell people to keep their lips sealed.

Fostering Personal Empowerment Another approach to changing self-­stigma builds on a point about self-­stigma made earlier in this chapter: Personal empowerment is the opposite of self-­stigma. Being empowered means having control over one’s treatment and one’s life (WHO Regional Office for Europe, 2010). Persons who have a strong sense of personal empowerment can be expected to have high self-­efficacy and self-­esteem. They are not overwhelmed by their symptoms and psychiatric labels, but have a positive outlook and take an active role in their recovery. Empowerment approaches may be considered among the best ways to deal with self-­stigma. Communities and health service providers can foster personal empowerment among persons with psychiatric disabilities in a variety of ways that involve giving persons greater control over their own treatment and integration into the community. Research findings indicate that programs in which persons with disabilities are included in all facets of intervention are conducive to the attainment of vocational and independent living goals (Corrigan, Angell, et al., 2012). At the most general level, fostering empowerment involves adopting a collaborative approach to treatment planning in which a person ceases to be merely a passive recipient of services (Corrigan, Angell, et al., 2012). At the very least, programs and providers should form treatment partnerships with their patients, seeking feedback from the service users as to their satisfaction with the services offered and their suggestions for improvement. The emphasis is based on the service users’ strengths and potential rather than their weaknesses. Beyond this, truly empowering services promote the self-­determination of people with psychiatric disabilities in relation to employment opportunities, housing, and other areas of social life. Rather than promote stigmatizing and coercive removal

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from the community, these new approaches provide community-based support for the people’s continuing efforts to adapt to community living. This approach often occurs in the assertive community treatment (ACT) of Test and Stein (1980). In ACT, services are brought directly to a person’s home, workplace, or other meaningful community setting (see Chapter 8). Supported employment and supported education are also methods used to facilitate the inclusion of persons with disabilities into the fabric of society (Modini et al., 2016). These approaches, which were given increased priority with the passage of the ADA in 1990, encourage the prompt placement of such persons into employment and/or educational settings and provide supportive services for their continuing success in these activities. This approach contrasts with traditional paradigms that focus on preparing persons with psychiatric disabilities for independent social functioning before supporting them in actual community involvement. People can also empower themselves by offering peer support. The role of peer services is discussed more fully in Chapter 17.

The Paradox of Trying to Fix Self-­Stigma There is a paradox in trying to change self-­stigma, of which service providers and advocates need to be wary. Namely, focusing on self-­stigma may frame prejudice and discrimination as problems solely of people with mental illness (Corrigan, 2018; Rüsch, 2023). Like the disabilities that arise from their illness, stigma may be viewed as another unfortunate result of having mental illness with which such people must learn to live. This kind of perspective may ignore the public’s responsibility in creating and maintaining stigma. Although there is value in helping users of mental health services and others victimized by stigma learn how to deal with its harm for themselves, such efforts should not release the public from its responsibility for eradicating stigma. Link, Mirotznik, and Cullen (1991) have argued that because stigma is powerfully reinforced by culture, its effects are not easily overcome by the coping actions of individuals. They conclude that labeling and stigma are “social problems” that need to be addressed by public approaches, not “individual troubles” to be addressed solely in personal/private therapies. Although Link et al.’s formulation risks being one-sided in limiting itself to interventions aimed only at society at large (research supports the conclusion that both individual-level and societal-level interventions can be useful), it is true that the self-­stigma experienced by some people with mental illness is less likely to go away if the public as a whole refuses to nurture stereotypes, prejudice, and discrimination.

ERASING PUBLIC STIGMA Corrigan and Penn (1999) have grouped the various approaches to changing the public stigma of mental illness into three processes: protest, education, and contact. We discuss these processes first.

Protest Protest strategies highlight the injustice of specific stigmas and lead to a moral appeal for people to stop thinking that way: In effect, “Shame on you for holding such disrespectful ideas about people with mental illness!” Ironically, this kind of attitude suppression may yield a rebound effect, so that prejudices about a group remain unchanged or actually become worse (Penn & Corrigan, 2002). Although there are both cognitive and social

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explanations for this kind of rebound, perhaps the simplest is the construct of psychological reactance (Brehm, 1966): “Don’t tell me what to think!” Hence, protest may have only limited effectiveness in changing public attitudes about people with mental illness. This does not mean that protest has no role in decreasing stigma. There is largely anecdotal evidence that protest can change some behaviors significantly. For example, NAMI StigmaBusters is an email alert system that notifies members about stigmatizing representations of persons with mental illness in the media, and provides instructions on how to contact offending organizations and their sponsors. Through StigmaBusters, NAMI has successfully convinced various media groups to curtail using disrespectful images of mental illness in promoting their products. This suggests that organized protest can be a useful tool for convincing television networks, movie producers, advertisers, and others to stop running stigmatizing programs, ads, and articles, rather than alienate an important sales demographic. Future research might examine the extent to which protest is effective as a punishing consequence to discriminatory behavior—in other words, the extent to which it decreases the likelihood that people will repeat this behavior. Research might also consider other types of punishing consequences, such as legal penalties prescribed by the ADA and the Fair Housing Act. For example, what is the effect of judgments ordering punitive damages to be paid by employers who discriminate in hiring individuals with mental illness, or penalties to be assessed against communities that have designed zoning laws to keep group homes for persons with mental illness out? It is important to keep in mind that these are rare phenomena indeed (Stefan, 2001). Do such penalties prevent future discrimination? In like manner, research might examine reinforcing consequences to affirmative actions that undermine stigma and encourage more public opportunities for people with mental illness (e.g., government tax credits for employers who hire and provide reasonable accommodations to people with psychiatric disabilities). The importance of affirmative action is discussed more fully in the section of this chapter on addressing structural stigma.

Education Educational approaches to decreasing stigma contrast myths with facts about mental illness. Educational strategies aimed at reducing mental illness stigma have used public service announcements, books, flyers, movies, videos, and other audiovisual aids to dispel myths about mental illness and replace them with facts (Corrigan, 2018). The educational approach is optimistic: It assumes that as soon as people know non-­stigmatizing facts, they will no longer endorse prejudicial attitudes or discriminate against people with mental illness. However, there are a number of problems (Corrigan, 2018): First, educational approaches often have low penetration rates (i.e., they do not reach a large proportion of the audience unless they are implemented for everyone as part of a school curriculum or the like). Second, there is information overload, which means that most people receive so much information or pseudoinformation online or offline that an additional hour or two of antistigma education may not have an impact. Third, there is the aforementioned psychological reactance, because similar to protest, education tends to tell people what they should think. Fourth, the message of educational campaigns is hard to determine: Should people feel pity for the poor mentally ill? Should people be taught that it is “normal” to have a mental illness? Or should the message be that we are all on a continuum between complete mental health and severe mental illness? While the latter is true, evidence so far is lacking that this message effectively reduces stigma (Helmus, Schaars, Wierenga, de Glint, & van Os, 2019). Fifth, if education were helpful, mental health care professionals

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should be free of negative attitudes toward their patients. However, this is not the case (Henderson et al., 2014). Finally, there are a number of educational interventions that have no or only a negligible effect on public stigma: Examples are Mental Health First Aid (Morgan, Ross, & Reavley, 2018) or a broad educational media campaign in the German city of Hamburg (Makowski et al., 2016).

Contact Contact has long been considered an effective means for reducing intergroup prejudice. In formalizing the contact hypothesis, Allport (1954) contended—and more recent research supports his contention (Pettigrew & Tropp, 2008)—that “optimal” contact interventions must contain four elements: 1.  Equal status between groups. In the contact situation, neither the minority nor the majority group members should occupy a higher status; that is, neither group should be in charge. This differs from the type of contact that members of certain power groups typically have with persons with mental illness (e.g., doctor–­patient, landlord–tenant, employer–­employee). 2.  Common goals. Both groups should be working toward the same ends. Some studies of “optimal” contact have used contrived tasks, such as completing a puzzle. In more natural settings, tasks might include working together on a community project or solving a neighborhood problem. 3.  No competition. The tone of the contact should be a joint effort, not a competitive one. 4.  Authoritative sanction for the contact. This might mean that the contact intervention is sponsored or endorsed by the management of an employment organization, or by particular community organizations (e.g., the community’s board of education or the Better Business Bureau). Contact’s benefits are also enhanced when the contact is made with a person who moderately disconfirms the stereotypes about their group (Vezzali & Stathi, 2021). Individuals who strongly disconfirm prevailing stereotypes may not be believed as representatives; instead, they may be viewed as “special exceptions.” Conversely, contact with persons who behave in ways consistent with the stereotypes about their group may reinforce stigmatizing attitudes or make them worse. Several studies specifically focusing on contact’s effect on mental illness stigma have produced promising findings. One study found that contact with a person with mental illness produced greater improvements in attitudes than protest, education, and control conditions did (Corrigan, River, et al., 2001). In a subsequent study, contact again produced the greatest improvements in participants’ attitudes and willingness to donate money to NAMI (Corrigan et al., 2002).

The Evidence Base Extensive research has been done on the education and contact approaches to public stigma change. One review of the literature summarized 79 studies, 13 of which were of the most rigorous form (i.e., RCTs). Results of the latter group of studies clearly showed that adults who participated in contact had significantly better changes in stigmatizing

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attitudes and behavioral intentions (Corrigan, Morris, et al., 2012). The summary also showed that in vivo contact (in which a person with mental illness met face to face with a targeted audience) had significantly better effects than video or online versions. A subsequent analysis suggested that benefits of contact were maintained better over time than were benefits of education (Corrigan, Michaels, & Morris, 2015). Interestingly, adolescents seemed to be affected by education and contact differently: For them, education led to better attitude change than did contact, while education and contact had similar effects on behavior A more recent meta-­analysis has summarized the evidence of contact based on approximately 100 studies from 24 countries and about 26,000 participants (Maunder & White, 2019). Contact had a moderately strong effect on attitudes, emotional reactions and behavioral intentions (actual behaviors were rarely assessed). Encouragingly, contact with a person with one diagnosis improved attitudes of the target group toward people with any mental illness. In this meta-­analysis, the type of contact (face-to-face, video, online, lecture, etc.) did not affect its efficacy. The positive effects of contact remained stable over 4–12 months (Maunder & White, 2019). Another meta-­ analysis found positive effects of video-based contact to reduce prejudice among schoolchildren (Janoušková et al., 2017). While contact is discussed here as a strategy to reduce public stigma, it may affect other forms of stigma too. By definition, people with mental illness take a leading role in contact-based interventions, and therefore one could assume that their self-­stigma diminishes through leading these programs. A Spanish study supports this assumption (Martínez-­Hidalgo, Lorenzo-Sánchez, López García, & Regadera, 2018). It has been debated how contact interventions affect the willingness of those with and without mental illness to fight for social change. But recent data support the optimistic notion that contact increases the motivation of both groups to form coalitions and to address structural discrimination (Reimer et al., 2017).

The Message Matters Many antistigma campaigns have utilized an educational approach, either by itself or in conjunction with protest or contact. And many, hoping to reduce the blame associated with mental illness, have focused on a biological model of mental illness. One example was NAMI’s “Mental Illness Is a Brain Disease” campaign, which involved distributing posters, buttons, and literature that provided information about the biological bases of serious mental illnesses. There is evidence that this type of message does reduce blame for psychiatric illness. However, framing mental illness in purely biological terms may increase other negative attitudes about mental illness (Lebowitz & Appelbaum, 2019). The more members of the general public perceive mental illness as a biological or genetic disorder, the more they tend to see people with mental illness as different. Biomedical illness concepts also increase therapeutic pessimism (Phelan, 2002; Phelan, Cruz-Rojas, & Reiff, 2002). Biological explanations of mental illness may also yield unintended consequences by supporting the benevolence stigma—namely, the belief that persons with mental illness are innocent and child-like, and as such must be taken care of by parental figures. Although this type of stigma is well intentioned, it can be disempowering, leading persons with mental illness (and others) to view themselves as different from other people, less competent, and less acceptable as friends. Biological explanations may also imply that persons with mental illness have no control over their behavior and are therefore unpredictable and violent (Lebowitz & Appelbaum, 2019).

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In contrast to the biological message, several studies have found that psychosocial explanations of mental illness can be effective in both increasing positive images of persons with mental illness and reducing fear. Instead of arguing that mental illness is like any other medical illness (Pescosolido et al., 2010), psychosocial explanations of mental illness focus on environmental stressors and trauma as causal factors. These may include childhood abuse, poverty, loneliness, immigrant or ethnic-­minority status, and unemployment or job stress. The idea is to reframe psychiatric symptoms as understandable reactions to life events. A study conducted in New Zealand suggested that information about psychosocial causes and treatments for mental illness was effective for improving attitudes, particularly those related to dangerousness and unpredictability (Read & Law, 1999). Although this study of educational interventions focusing on a psychosocial model did not include a control or comparison group, it does suggest that this type of message can be useful for challenging stigma. Combined with the evidence for mixed effects of interventions limited to biological explanations, this research supports an approach framing mental illness as a disorder with both biological and psychosocial components, and emphasizing that people can and do recover from mental illness (Rüsch, 2023). Clearly, the content of the educational message is important and needs to be tailored to the specific components of stigma and to the specific groups being targeted. For example, addressing the biological causes of mental illness with a group of neighborhood residents may improve some of their attitudes about persons with mental illness. However, unless dangerousness is addressed, their willingness to welcome a group home to the neighborhood may go unchanged. Conversely, addressing only dangerousness with police officers may make them less likely to use undue force but may not influence their willingness to assist a crime victim with a mental illness. Legislators at various levels are other groups making important decisions that may limit or expand the opportunities and resources available to persons with mental illness. For example, they decide how tax money is distributed among various types of services. Research on attributions and helping behavior indicates that people are more willing to help and give resources to people whom they do not blame for their problems (Corrigan & Watson, 2003). Thus, it might prove most fruitful to focus on a biological message when addressing legislators regarding funding for mental health services or health insurance parity. Including information that people with mental illness do recover and lead meaningful lives may enhance the positive effect of the message. Clearly, if time and resources allow, strategies should address multiple stereotypes. More realistically, the content of a message may need to be selectively targeted to the stereotypes most relevant to the goals of the intervention.

Efforts at Changing Public Stigma In recent years, major advocacy groups in the United States, such as NAMI and the National Mental Health Association, have launched antistigma campaigns. Other groups, including the National Stigma Clearinghouse and the Resource Center to Address Discrimination and Stigma Associated with Mental Illnesses, have made the stigma of mental illness their sole focus. Both federal and state governments have also joined the fray. In the past two decades, SAMHSA and NIMH have supported nationwide conferences on stigma. SAMHSA produced and disseminated an antistigma kit that included posters and brochures challenging common stereotypes (see Figure 6.1). It funded the Center Against Discrimination and Stigma as a national technical support center on mental health stigma. It also sponsored the “Erase the Barriers” initiative, an eight-state effort

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FIGURE 6.1.  A frame from the “Change Your Mind” public service announcement produced by the Substance Abuse and Mental Health Services Administration (SAMHSA).

to decrease stigma using public service announcements and public education strategies. Several national leaders joined together to form the National Mental Health Awareness Campaign (NMHAC), which developed a multilevel effort to challenge stigma. For international efforts outside the United States, see the earlier comment about GASA. Now numbering more than 4,000 members, the NAMI StigmaBusters system has been an important source of protest, as described earlier. Among its many efforts, the StigmaBusters system identifies disrespectful and inaccurate images of mental illness in the popular media and coordinates letter-­writing campaigns to get producers of these images to stop. In 2004, NAMI (then called the National Alliance for the Mentally Ill) developed a contact-based antistigma program called “In Our Own Voice: Living with Mental Illness.” Particularly remarkable about this program was its combination of carefully crafted exercises and information base, which helped people with mental illness to teach civic and other groups about the experience of mental illness. NAMI provided the program to law enforcement agencies, schools, businesses, and other community groups. Research supports positive effects of In Our Own Voice (Corrigan, Rafacz, et al., 2010). There are also several examples of state governments using contact to diminish stigma and enhance consumer empowerment. New York, Florida, and Illinois, for instance, arranged formal dialogues between persons with mental illness and mental health care professionals as a way to change insidious attitudes in the mental health system that undermine empowerment. These dialogues provided a forum for health care professionals and their patients to exchange perspectives about mental illness and challenge latent stigmatizing attitudes. Moreover, the U.S. Center for Mental Health Services has an intramural office on consumer empowerment and funds consumer-based, extramural projects that attempt to discount stigma. Many state departments of mental health

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hire consumer advocates whose jobs include (among other things) vigilance to misrepresentations of mental health issues.

A Targeted Model of Stigma Change The campaigns we have just described are just some examples of how education, protest, and contact can be used to reduce prejudice and discrimination. The reader should note the common feature of these examples that further augments program impact: Each program targets a specific group and corresponding attitudes and behaviors for change. The NMHAC attempted to increase service use among adolescents who might be experiencing mental health-­related problems. NAMI’s StigmaBusters system seeks to stop the popular media from perpetuating disrespectful images in its TV shows and movies. States have been trying to change entrenched and disempowering attitudes in their mental health systems by pairing people with mental illness with providers. The logic of a target-­specific approach is all the more compelling when compared to the alternative—a generic effort to change the attitudes of the population as a whole. Consider, for example, a video promoting the idea that mental illness affects 20% of the citizenry, and hence is neither rare nor bizarre. Although this effort would be well intentioned and accurate, such a mass appeal would suffer because it is not particularly relevant to specific elements of the populace. It is unclear who exactly is supposed to take note of this message. Moreover, the expected products of such efforts are fuzzy; it is unclear exactly how the population should change given the highlighted stereotypes and prejudice. People might think, “Okay, so 20% of people in the United States may be mentally ill in their lifetimes. Now what should I do about it?” The goal of improving attitudes about mental illness in general is laudable, yet too amorphous to achieve. A targeted approach that focuses on changing specific discriminatory behaviors of specific groups lends itself to the practical outcomes outlined in Table 6.2 (Corrigan, 2011b). First, antistigma programs target specific power groups that make important decisions about the resources and opportunities available to persons with mental illness. These include employers, landlords, police officers, legislators, and media executives. Individuals acting out these power roles are significantly influenced by institutional and organizational factors (Link & Phelan, 2001) and may be more likely to rely on stereotypes about a group than persons in less powerful roles may be. For each group, the discriminatory behaviors and corresponding attitudes to be changed should be identified. For example, the developers of a campaign may want to address employers’ unwillingness to hire persons with mental illness. The corresponding attitudes might relate to competence and danger to other employees. Once the target group, behaviors, and attitudes are identified, the most appropriate strategy and content can be selected. Although the effect of protest on attitudes is unclear, it seems to be useful for eliminating undesirable behaviors such as the continuing portrayal of negative images in the media, as well as discriminatory housing and labor practices. Education appears to improve attitudes on a short-term basis and can be implemented relatively inexpensively. Contact appears to be the most promising strategy, especially when it is structured to include the “optimal” conditions we discussed. However, it may be difficult to achieve on a broad scale unless more people become willing to disclose their mental illness in work and other social situations. Note that antistigma campaigns may employ a combination of strategies to address the attitudes and behaviors of a particular group. In addition to targeting power groups, campaigns may target groups that are hesitant to access services because of stigma (e.g., the NMHAC’s program aimed at

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TABLE 6.2.  Targeting in Antistigma Programs Targets

Discriminatory behavior

Attitudes

Employers

• Fail to hire • No reasonable accommodation

• View individuals as dangerous • View individuals as incompetent

Landlords

• Fail to lease • No reasonable accommodation

• View individuals as dangerous • View individuals as irresponsible

Criminal justice professionals

• Unnecessarily coercive • Fail to use mental health

• View individuals as dangerous • View individuals as responsible or to

Policy makers

• Insufficient resource allocation • Unfriendly interpretation of

• View individuals as dangerous • View individuals as responsible or to

• Perpetuation and dissemination

• View individuals as dangerous • View individuals as responsible or to

services

regulations

The media

of stigmatizing images

blame

blame

blame

• View individuals as incompetent • View individuals as irresponsible

teens who might be struggling with mental health issues). The targeted model is useful for these programs as well.

CHANGING SOCIAL STRUCTURES Social scientists who have developed ideas related to institutional and structural factors conclude that individual-level strategies for stigma change—­education, protest, and contact—are probably not sufficient for remediating prejudice and discrimination, which are largely caused by collective variables (Jost, 2019; Link & Phelan, 2001). Education of key power groups might have some limited impact on the kinds of intentional biases represented by institutional discrimination. For example, as suggested, one way to diminish legislative actions that unjustly restrict the opportunities of people with mental illness is to educate legislators about how their actions are impinging on an important part of their constituency. More difficult, however, is altering the course of structural discrimination (see Chapter 2 for a discussion of structural stigma). Because the impact is frequently unintentional, educational and other individual-level strategies should have no effect on structural factors. Instead, various social change strategies that fall under the rubric of affirmative action may be relevant for stopping the harm caused by structural discrimination.

Affirmative Actions Affirmative actions are a collection of government-­approved activities intended to redress the disparities that have arisen from historical trends in prejudice and discrimination. According to affirmative models, membership in a stigmatized group is added to considerations of an individual’s skills and achievements for access to specific limited opportunities. Perhaps best known and most controversial among affirmative actions are quotas

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(i.e., requirements that a certain percentage of people given access to a limited opportunity must be from targeted ethnic or gender groups). For example, some colleges and universities have used a prospective student’s minority-­ethnic status as an advantage in deciding admission. To our knowledge, quotas have not been used in the United States as a mechanism to rectify structural discrimination of mental illness. The ADA, however, seems to be a federal policy that mirrors affirmative goals. ADA clauses that prohibit discrimination by employers because of a person’s psychiatric disability are effective for barring both individual and institutional levels of discrimination. It is the ADA clause on reasonable accommodations, however, that is an affirmative action at the structural level. Namely, reasonable accommodation gives people with psychiatric disabilities (a group that has been traditionally discriminated against in job settings) an edge toward keeping their jobs. Table 6.3 provides examples of reasonable accommodations for people with psychiatric disabilities. The 1988 amendments to the Fair Housing Act offer similar guarantees of reasonable accommodations for people with psychiatric disabilities in the housing sector. Although accommodations reasonably emerge from these statutes, neither businesses nor landlords necessarily know how to provide them. Moreover, note that there are statutory limits to reasonable accommodations. Accommodations that place an undue hardship on a business may be excluded. Rehabilitation practitioners play an important role in helping people receive these accommodations and in assisting employers in making them available. Affirmative actions like these are needed to offset the injustices that continue because of structural discrimination against people with mental illness.

SUMMARY AND CONCLUSIONS Stigma has been portrayed as a major barrier to community integration and personal empowerment. Personal empowerment is enhanced by challenging self-­stigma. Ways to diminish self-­stigma include cognitive reframing, which challenges the irrational thoughts on which self-­stigma is based; education about (self-)stigma; narrative approaches; and strategic decisions to disclose one’s mental health history may also facilitate personal empowerment. Levels of disclosure (or lack of disclosure) include social avoidance, secrecy, selective disclosure, indiscriminate disclosure, and broadcasting. Psychosocial approaches that directly challenge self-­stigma are also important for promoting personal empowerment. These include fostering a collaborative approach to treatment programming; community-based supported services for housing, employment, and education; people with mental illness as providers; and consumer-­operated services. Three approaches have been pursued to change the public stigma of mental illness; these are essential for promoting community integration. Protest involves appealing to a moral or economic authority to ask people to stop prejudice and discrimination; education involves contrasting the myths of mental illness with facts; and contact involves challenging stigma by facilitating interactions between people with mental illness and the public. Affirmative actions are necessary antistigma programs to challenge both the intentional and unintentional social structures that promote prejudice and discrimination. Given the various causes of stigma and the multiple approaches to diminishing it, a comprehensive program will need to combine a variety of antistigma approaches.

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TABLE 6.3.  Examples of Reasonable Accommodations That May Conceivably Apply to the Needs of People with Psychiatric Disabilities Job restructuring

• Reallocate marginal job functions. Example: As part of Sally’s secretarial job, she was supposed to shred confidential documents. This was not an essential function, and the machine scared her. Therefore, this duty was given to someone else. Sick time

• Permit the use of accrued paid leave or unpaid leave for treatment. Example: Sarah needs 3 weeks off to recover from a relapse. She has accrued 2 weeks of paid leave, so the employer will need to provide another week of unpaid leave. Modified or part-time schedule

• Change the work schedule. Example: Harold wants to change his start time from 8:00 A.M. to 9:00 A.M. His medicine makes it hard for him to wake on time. He will still work his full 8 hours. Example: Shirl wants to change her full-time job as a stenographer to half-time, at least for the next 6 months. She is not able to handle the demands of a full-time job because of recurring panic attacks. Of course, she will be paid for only 4 hours of work each day. Modified workplace

• Provide room dividers or other soundproofing and visual barriers to decrease distractions. Example: Office partitions were put around Marty’s desk so that he will not be distracted by the sales room. • Move a person away from noisy machinery or high-traffic areas that may be distracting. Example: Delores’s office was moved to the back, away from the reception area, so that she will not be distracted by visitors. • Permit an individual to wear headphones that block out distractions. Example: Molly wears headphones so that she will not be bothered by phones ringing throughout the day. • Allow a person to work at home. Example: Emily completes much of the computer work for her job at home. In this way, she does not have to deal with the social anxiety of working with other employees. Modified policies

• Change work policies that govern personnel. Example: Bert is permitted to take detailed notes during sales meetings, even though other staff members are not. Example: Daniel has a soft drink at his work station for the dry mouth that results from his medication. Example: Stanley is permitted to have the radio on in his office. The soft music relaxes him. Supervision

• Have supervisors adjust feedback style, including changes in communication and extra training materials. Example: Helene receives a daily 10-minute feedback from her supervisor. Example: Juanita was given illustrated instructions on how to run the packing machine. • Provide a job coach to offer counseling and support on the job. Example: Phil is visited on the job by a coach from the local rehabilitation center. The job coach provides support and counseling on work-related issues.

                                      (continued)

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TABLE 6.3.  (continued) Reassignment

• Provide a job reassignment to another position whose essential functions more closely parallel the

skills of the employee with disabilities. Example: Brunetta was moved from a clerk/typist job to a telephone/reception position because she found its required tasks easier.

Note. All these accommodations can be arranged if they do not cause undue hardship for the employer. Based on Corrigan and Lundin (2001).

CHAPTER 7

Wellness Self-Management and Recovery H

elping people learn how to manage their psychiatric disabilities— including understanding the nature and treatment of their mental illness, and developing strategies for minimizing its impact on their lives—is an important goal of psychiatric rehabilitation. A related goal is recovery: While the traditional clinical recovery model focused on symptom reduction, the current approach is different. Recovery means that people with psychiatric disabilities learn to live a self-determined, hopeful life that is as good as possible given the challenges of their illness (Slade, 2009). There are two sides to these goals: illness self-management, so that people are better able to manage symptoms and disabilities that undermine their aims; and wellness self-management, so that they are better able to promote their health and well-being. Illness self-management includes making informed treatment decisions, reducing the impact of distressing or otherwise problematic symptoms, and reducing relapses and rehospitalizations. Absence of illness is never enough, however. Wellness self-management focuses on lifestyle choices that promote the fullest experience of people’s physical and mental capabilities. Quality of life requires both illness management and wellness promotion. More broadly, these two forms of selfmanagement help people identify and pursue personal goals to develop a physically and psychologically healthy lifestyle characterized by hope, optimism, and a sense of purpose. Both approaches, illness and wellness self-management, are closely related in practice. This chapter begins with a review of historical perspectives that have contributed to the broad acceptance of both illness and wellness self-management as important concepts, including progress in disease management, health promotion, SDM, and peer support. Components of self-management (and the research evidence supporting those components) are then reviewed, and several widely used self-management programs are described. The chapter ends with brief discussions of mobile health technologies and early intervention strategies.

HISTORICAL PERSPECTIVES Efforts to foster the self-management of psychiatric illnesses in persons with psychiatric disabilities have their roots in similar efforts to help people manage chronic medical 135

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diseases; the strategies that promote health; the SDM movement in medicine; and the rise of the mental health recovery movement involving peer support.

Illness Self-­Management Lifelong illnesses such as diabetes, heart disease, and asthma require ongoing care to minimize disruptive effects on daily living and prevent premature mortality. For example, understanding which foods can dramatically increase blood sugar levels will enable people with diabetes to maintain a steady glucose blood level through dietary monitoring. In addition, advances in medical technology have improved outcomes of chronic diseases. Through regular monitoring of blood glucose levels and daily administration of insulin, individuals with diabetes can enjoy normal, long lives. Although an increased understanding of the causes of disease and determinants of outcomes has improved long-term prognosis, gains from these advances are realized only by teaching people the principles of managing their illness and helping them incorporate critical changes into their lifestyle. This means teaching individuals about the nature of their diseases, informing them about lifestyle changes that may promote better disease management, and teaching them how to monitor their illness (and, when possible, self-­administer treatments), and know when they need to contact treatment providers and others in order to address emergent concerns before they become more serious (Dunn & Conard, 2018). Promoting illness self-­management is a natural part of helping professions that strive to minimize the impact of a chronic disease on functioning and quality of life. Management of psychiatric disabilities has evolved to incorporate teaching self-­management as a core part of treatment (Whiteman, Naslund, DiNapoli, Bruce, & Bartels, 2016). Rehabilitation providers help persons with psychiatric disabilities learn about their mental illness and ways to deal with it more effectively. A systematic review of illness self-­management programs for people with severe mental illness found 37 RCTs of mainly clinician-led, group-based interventions of various length: On average, these programs had significant positive effects on psychiatric symptoms and the length of hospital admissions, as well as on hope, recovery, empowerment and self-­efficacy (Lean et al., 2019).

Wellness Self-­Management A focus on wellness emerged in the 19th century as a reaction to medicine’s focus on disease—a focus that represented humankind as broken and ill rather than whole and able. The idea of wellness is often credited to Halbert Dunn, who highlighted the importance of fitness, environment, and self-­responsibility in fully understanding health (Miller, 2005). Dunn may have been the first to assert that the absence of sickness does not make a fully lived life. Health promotion is a parallel vision that emerged out of public health. Scholars have recently begun to apply wellness to the experiences and goals of people with mental illness (Swarbrick, Gill, & Pratt, 2016; Zechner, Pratt, Barrett, Dreker, & Santos, 2019). Wellness in mental health seeks to integrate aspects of prevention, education, and health. Wellness also focuses on modifying health risks such as smoking, poor diet, and little physical activity. Researchers are partnering with providers to develop programs meant to remedy these health risks (Zechner et al., 2019). Wellness management parallels illness management in some ways (Mueser & Cook, 2013; Salerno et al., 2011). They both use structured curricula that address recovery, relapse, coping, and social supports. These goals are furthered by the provision of facts about mental health problems, about medication and other treatments, and about the development of personal goals. Wellness management differs from illness management

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PERSONAL EXAMPLE Jerome Hicks Developed a Psychiatric Disorder Jerome was in his first year of college when he began to have difficulties concentrating and started to withdraw from others. According to his family, Jerome just “wasn’t his usual self.” Their concerns increased when he performed poorly during his first semester. When his parents tried to talk to Jerome about his problems, he seemed suspicious. These concerns were only amplified when Jerome stopped going to classes the following semester, confiding to friends that his dormitory room had been bugged and his roommate could read his thoughts. School officials contacted Jerome’s parents and explained that he needed to see a doctor because he was experiencing psychological problems at school. Jerome refused to accept the referral, insisting that there was a conspiracy against him. Eventually Jerome stopped eating because he thought his food was poisoned, and he was involuntarily hospitalized. In the hospital, Jerome was diagnosed with schizophreniform disorder and was informed that medication was an important part of his treatment. It took several weeks for his psychotic symptoms to improve; he was then discharged from the hospital and given an appointment at his local community mental health center. Jerome decided he would not return to school at this time because it was too late to get his second semester back on track, so he returned home to live with his parents. Jerome missed his appointment at the community mental health center. When his behavior once again became disorganized and psychotic, his family escorted him to the center to meet with the doctor. Jerome was given a prescription for a new antipsychotic medication and was reminded that taking it was an important part of his treatment. He was also assigned a care coordinator who met with him to determine his needs and goals. Jerome told his care coordinator that he was interested in returning to school at some point, but felt he needed to get his “affairs in order” before that time. The care coordinator suggested that he participate in a social rehabilitation group at the center before returning to school, which Jerome noncommittally agreed to do. In subsequent months, Jerome continued to be inconsistent in taking medication, disorganized in his speech, and paranoid about his family’s intentions toward him. After numerous arguments and significant tension in the family, it was agreed that Jerome should move out and into a local apartment where supported living services would be available. This was accomplished without incident—but as soon as he was on his own, Jerome stopped taking his medication, which made him more prone to relapses. His behavior was often disorganized and psychotic, which eventually led the mental health center to assign him to an assertive community treatment program to ensure that he got his daily living needs met, including taking medication. Jerome had fewer relapses over the next few years. However, he continued to function marginally in terms of involvement in meaningful activities and social relationships, and he still had one or two relapses per year requiring brief hospitalization. This story illustrates the role of community care coordination and medications in managing serious mental illness. It misses self-management strategies, however—those that might help Jerome manage his illness as well as promote his health.

by including purposeful instruction and skills focused on practical issues related to diet, exercise, relationships, and recreation. Positive psychology, or the study of what is “right” about people, plays an important role here too. Researchers in this area seek to understand what helps people and their communities thrive (Ciarrochi, Hayes, Oades, & Hofmann, 2021). A key idea is that mental wellness is more than the absence of mental illness. Investigators have identified principles and practices that promote positive

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psychology and have developed concepts how to integrate positive psychology into mental health care (Bohlmeijer & Westerhof, 2021).

Shared Decision Making As described in earlier chapters, SDM is the process by which important medical decisions are made in active collaboration among the person, the treatment provider, and anyone else who may be closely involved with the person, such as family members. SDM is a movement that began in modern medicine (National Institute for Health and Care Excellence [NICE], 2021) and was rapidly adopted by psychiatry (Beitinger, Kissling, & Hamann, 2014). The rationale for SDM is twofold. First, as medical technology for treating different diseases has expanded, so too has awareness that deciding which interventions are best for a particular disease is not straightforward, but rather depends on the personal values and preferences of the individual with the disease. For example, surgery for prostate cancer may prolong life, but sometimes at the cost of compromised sexual function. In such cases, the decision to have surgery is better understood as a personal one that depends on what is important to the individual and not simply an objective decision that can be made by the treatment provider. Treatments and decisions not to pursue treatment have advantages and disadvantages. Informed decision making requires an individual to learn basic information about the nature of the disorder, the treatment options, and their likely effects (both positive and negative; NICE, 2021). Second, a person’s choice not to follow prescriptions or recommended treatments is a problem common to modern medicine, including psychiatry (Coldham, Addington, & Addington, 2002). Psychological reactance is a concept that refers to an individual’s sensitivity to others’ efforts to control their behavior (Brehm, 1966). Authoritarian-­ sounding treatment recommendations may undermine some decisions because of psychological reactance among people with mental illness (De las Cuevas, Peñate, & Sanz, 2014). People may, however, be more open to some treatment recommendations when providers make these recommendations collaboratively, respecting their right to choose which treatments they want. SDM involves providing people with the information they need in order to make informed decisions about treatment, which may ultimately improve adherence to recommended and effective treatments. A systematic review of 15 RCTs of SDM interventions for people with severe mental illness showed some benefits of SDM, mostly that participants perceived greater involvement in treatment decisions and were more satisfied with their mental health care. However, there was no clear effect of SDM on recovery, psychiatric symptoms, or other clinical outcomes (Aoki et al., 2022). A systematic review of qualitative and quantitative SDM studies found similar results (Thomas et al., 2021).

Peer Support According to Frese and Davis (1997), the historical roots of the mental health peer support movement can be traced back to the Alleged Lunatics’ Friend Society in England in the mid-19th century (Hervey, 1986), and the later publication of Clifford Beers’ (1908) book A Mind That Found Itself: An Autobiography, which chronicled abuses in the name of treatment for psychiatric disabilities that Beers had experienced or witnessed during his time as an inpatient. More recent influences contributed to the rise of peer services beginning in the 1970s, including deinstitutionalization (Mechanic & Rochefort, 1990), widespread dissatisfaction with traditional psychiatric care, and the growth of

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self-help approaches for personal problems (Novella, 2008). Peer services stress having people manage services for themselves in an environment where all aspects of intervention are self-­determined. Chapter 17 addresses the role of peer supports and services.

COMPONENTS OF ILLNESS SELF-­MANAGEMENT PROGRAMS Teaching individuals how to better manage their psychiatric disabilities is a complex enterprise for which a wide range of strategies has been developed. The most commonly employed approaches include motivational interviewing, education about illness and treatment, treatment decision making and self-­determination, relapse prevention training, coping skills training, social skills training and interpersonal problem solving, and self-help and peer support. This section describes the rationale for and nature of each of these approaches to self-­management, as well as the research supporting them.

Motivational Interviewing Motivational interviewing helps people identify the advantages and disadvantages of treatment decisions (e.g., “Do I want to enter into supported employment to pursue a job as an accountant?”) and life choices (e.g., “Do I want to move across town to a newer apartment near the lake?”) (Miller & Rollnick, 2023). Providers use their listening skills to help people understand the costs and benefits of a decision. This is not meant to be a simple task—just adding up costs and benefits, and moving forward when there are more benefits. Dialogue is central to motivational interviewing; the task is an interactive process in which people can hear for themselves what underlies a specific decision. Motivational interviewing rests on four principles: 1.  Express empathy. Tough decisions are hard to make. Counselors need to understand and reflect this difficulty through motivational interviews. 2.  Develop discrepancy. People are likely to move on tough decisions when they see how their behaviors conflict with their personal goals. For example, a man with schizophrenia may have the long-term goal to get a job. If he considers stopping his antipsychotic medication, a counselor can highlight the potential conflict between the increased risk of relapse without antipsychotic medication and the man’s goal of employment. 3.  Rolling with resistance. As people unpack the costs and benefits of a decision, they may become fearful and turn away from related goals. A person deciding whether to act on an alcohol abuse problem, for example, may suddenly oppose any consideration of the problem during the motivational interview. The counselor recognizes this as understandable resistance, and helps the person live with this rather than challenging it. 4.  Support self-­efficacy. At the heart of motivational interviewing is a decision. A counselor seeks to reinforce a person in all efforts to gain control of the decision process and to reach a solution that is right for them. Motivational interviewing originally developed as a strategy to help people make decisions about their alcohol and other substance use, and has generated volumes of empirical support. Since then, it has been applied to a variety of mental and physical health problems; a significant review describes specific applications to vocational rehabilitation (Manthey, Jackson, & Evans-Brown, 2011). A systematic review of 14 randomized trials

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showed benefits of motivational interviewing on service use and treatment attendance among people with mental illness (Lawrence, Fulbrook, Somerset, & Schulz, 2017).

Education People need information about their psychiatric disabilities, as well as available treatments for them, in order to make informed decisions. Education (also called psychoeducation) is the most widely used approach for accomplishing this goal. Educational teaching is distinguished from other approaches, such as cognitive-­behavioral approaches, by its reliance on didactic rather than experiential (e.g., role playing, practicing) teaching methods. Examples of didactic teaching methods include providing basic information, asking questions to elicit a person’s experience, asking review questions to evaluate understanding of taught material, using written handouts that summarize pertinent material, and using films and videos to illustrate important points. A curriculum often includes information on the illness and its symptoms, its course, and its disabilities, as well as the range of services options. The entire educational package is framed in realities about hope and recovery. Research suggests that education is frequently incorporated into comprehensive rehabilitation programs aimed at improving illness self-­management for psychiatric disabilities (Lu et al., 2022; Solmi, Croatto, et al., 2023). However, research on these programs is not totally clear about the specific benefits of education. Understanding effects of educational interventions is further complicated by the fact that some programs described as “educational” include other treatment components, such as systematic training in problem solving. Research shows that programs that combine psychoeducation with cognitive training and social skills training improve psychosocial functioning of people with schizophrenia (Lu et al., 2022). These findings suggest that educational approaches alone are insufficient for improving a person’s ability to manage psychiatric disabilities. The evidence is more positive for family interventions: Psychoeducational family programs alone, without behavioral or skills training, reduced relapse rates among the family members with schizophrenia (Bighelli et al., 2021; Rodolico et al., 2022). Studies from China provide initial evidence that mindfulness-based psychoeducation may reduce symptoms among people with schizophrenia (McGlanaghy et al., 2021). A review of 47 studies found that psychoeducation for people with bipolar disorder, sometimes combined with psychoeducation for their families, reduces the frequency of new illness episodes and of psychiatric hospitalizations and improves adherence to psychiatric medication (Rabelo, Cruz, Ferreira, Viana, & Barbosa, 2021). Overall, psychoeducation is a promising approach for families and, if combined with other strategies, possibly for people with severe mental illness themselves (Maheshwari, Manohar, Chandran, & Rao, 2020).

Treatment Decision Making and Self-­Determination Treatment decisions are often framed in terms of adherence, or the lack thereof. In this light, problems with adherence to treatment recommendations are among the greatest challenges faced by mental health practitioners. These problems may be especially troublesome with regard to psychotropic medications, which are among the most effective treatments available for psychiatric disabilities. Studies show that about half of all people with depression, bipolar disorder, or schizophrenia do not take their medication as prescribed (Semahegn et al., 2020). There is often a negative valence to the idea of adherence;

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for example, a person may come to feel (or be made to feel) that in not taking prescribed medication, working with the job coach, or participating in family support, the person is somehow doing something wrong. Disapproval of a person’s treatment choices often generalizes to disrespect of the person. Unfortunately, adherence is a value that is the “gold standard” for assessing health decisions. In part, this myopia occurs because of the way the problem is often stated: “Why don’t people take their medications?” More helpful might be this phrasing: “Why do people choose [or not choose] intervention X at time Y?” One way to expand the discussion is to recognize adherence as one example of the broader set of decisions and behaviors related to a person’s pursuit of health (Corrigan, Angell, et al., 2012). Related questions might include the following: Did the person choose to seek out treatment when they might benefit from it? Did the person act on agreed-upon aspects of the treatment plan? This changes the research hypothesis away from whether the “patient” is doing what they “should” be doing to what processes affect independent decision making and behaviors related to health. Such a change opens discussions beyond the public health perspective to the breadth and depth of psychological models related to decision making in general, as well as the specific challenges of demonstrating the link between decisions and actual behaviors. In this light, self-­determination is the key principle guiding the task (Ng et al., 2012). Strategies that promote self-­determination, such as basic listening skills and motivational interviewing, help the person make decisions regarding treatment (Eassey, Reddel, Ryan, & Smith, 2020; Ryan, Patrick, Deci, & Williams, 2008).

Relapse Prevention Training Symptom relapses often occur gradually over a period of days or weeks. These relapses may be experienced as significant distress and undermine a person’s pursuit of goals. For many individuals, relapses only affect functioning when they are severe and untreated; therefore, helping people prevent relapses is an important element of illness self-­management. Symptom relapses are often preceded by subtle changes in cognition, mood, and social behavior, such as difficulties with concentration, feeling more anxious or depressed, and withdrawing from other people. The gradual onset of symptom relapses provides opportunities to teach individuals how to recognize early signs of relapse and take action to avert a full-blown relapse. Relapse prevention training is a systematic approach to educating people about the nature of relapses, their early warning signs, and possible triggers of relapses (e.g., holidays); teaching them to monitor personal early warning signs; and helping them establish relapse prevention plans for responding to these warning signs (Marlatt & Donovan, 2005). Because relapses may involve loss of insight into the illness, involving significant others in developing a relapse prevention plan is common practice (and is a common component of family psychoeducational programs). Plans for responding to early signs vary but may include contacting a member of the treatment team in order to obtain a temporary increase in medication, which is often a useful way of staving off a relapse (Taylor, Barnes, & Young, 2021). The steps of developing a relapse prevention plan are summarized in Table 7.1. Cognitive-­behavioral therapies with a focus on early warning signs and positive coping mechanisms are generally effective for relapse prevention of depression, with significant long-term effects even years after the end of psychotherapy (different from antidepressant medication, which is effective for relapse prevention only as long as people

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TABLE 7.1.  Steps of Relapse Prevention Training 1. Whenever possible, strive to develop a relapse prevention plan in collaboration with both the person with mental illness and a significant other, such as a family member or another person who spends time with the person with mental illness. 2. Discuss what a relapse is (a return or significant worsening of symptoms that interferes with functioning), and how having relapses and hospitalizations has affected the life of the person with mental illness and his or her attainment of desired goals. Explain that relapses usually occur gradually over time, and that developing a relapse prevention plan can minimize the chances or severity of future relapses. 3. Describe how stressful experiences can sometimes trigger relapses. Based on discussing one or two previous relapses, help the person with mental illness identify some triggers of past relapses (such as increased school or work expectations, or conflict with others). Stopping taking medication or using alcohol or drugs can also be identified as triggers. 4. Explain that relapses are usually preceded by small changes called early warning signs of relapse. These signs include changes in feelings (such as anxiety or depression), thinking (such as concentration programs or disorganization), social connections (such as avoiding people), beliefs (such as paranoia or believing others are talking about the person), and sensory experiences (such as hearing voices). Based on past relapses, help the person with mental illness identify two or three personal early warning signs of relapse. 5. Talk over and agree on a plan for responding to the early warning signs of a relapse. The plan should include who should monitor early warning signs, what steps need to be taken if early warning signs are detected (e.g., talking over the concern, problem solving about possible stresses, calling the case manager, or arranging for a special appointment to see the medication prescriber). 6. Write the plan down, rehearse the plan (in a role play) with people who are important to implementing it, give copies of the plan to people who need to know it (e.g., family members and the case manager), and identify a place where the person with mental illness can post the plan. 7. If another relapse occurs, meet to review how the relapse prevention plan worked, reinforce the steps and strategies of the plan that worked well, and explore whether any changes are needed to make the plan even more effective.

take it) (NICE, 2022). Adding psychotherapy to antidepressant medication significantly reduces relapse rates for depression (compared to antidepressants alone) (Breedvelt et al., 2021). For schizophrenia, a review of 14 trials, 10 of them RCTs, found evidence that different approaches effectively reduced relapse rates (Abu Sabra & Hamdan-­Mansour, 2022), including cognitive-­behavioral programs, social skills training, and family psychoeducation. Some of these interventions were combined in multi-­component interventions, and all interventions could be added to maintenance antipsychotic pharmacotherapy. A review compared relapse preventions for people with schizophrenia or with bipolar disorder; successful interventions to prevent relapse of schizophrenia tended to include the family, but the family was rarely involved in programs for bipolar disorder (Johansen, Hounsgaard, Frandsen, Fluttert, & Hansen, 2021). There is increasing interest in using mobile or internet-based technologies for relapse prevention programs. Many of these programs use cognitive-­behavioral strategies and are transdiagnostic. Some programs use technologies such as wearable devices to detect, for example, sleep disturbances or smartphone prompts during the day to collect data on mood swings as warning signs of relapse (Buck et al., 2021; Fonseka & Woo, 2022). However, this is an emerging field, and studies on the effectiveness of these approaches for relapse prevention are still inconsistent (Hennemann, Farnsteiner, & Sander, 2018).

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Coping Skills Training People with psychiatric disabilities often experience persistent aspects of illness, such as psychotic symptoms (e.g., hallucinations, delusions), mood problems (depression, anxiety), negative symptoms (apathy, anhedonia), and cognitive difficulties (problems with concentration and memory). These symptoms can be psychologically distressing and contribute to functional impairment. Helping people cope with or overcome persistent symptoms is an important goal of most rehabilitation programs. Coping skills training and cognitive restructuring are two commonly used approaches to helping people manage or overcome persistent symptoms. Each is briefly introduced here, and cognitive restructuring is discussed more fully in Chapter 13. Coping skills training helps people to manage persistent symptoms through the identification and practice of specific coping strategies. The approach evolved out of research on how people with persistent symptoms successfully manage their symptoms. These accounts, and research on the use of different coping strategies among people with psychiatric disabilities, shows that the more coping strategies people report, the more effective their coping efficacy (Mueser, Drake, et al., 1997; Phillips, Francey, Edwards, & McMurray, 2009). Therefore, an important aim of enhancing coping skills is to increase the number and variety of coping strategies people are able to use for managing persistent symptoms. Table 7.2 provides a set of skills a person might use to manage hearing voices. People with severe mental illness who find meaning in their experiences and their coping with the illness tend to have better coping skills (Roe, Yanos, & Lysaker, 2006).

Social Skills Training and Interpersonal Problem Solving Social skills training is a systematic approach to teaching interpersonal skills based on social learning theory. Whereas early applications of social skills training focused on assertiveness in nonclinical populations, success in this area soon led to using similar methods to address other areas of social functioning for people with disabilities (Liberman et al., 1989). Social skills training procedures are now among the most widely studied and implemented tools for changing social behavior across a wide range of individuals and situations, including persons with psychiatric disorders, substance use disorders, and developmental disabilities. Although the applications of social skills training vary, depending on the specific techniques taught and on the population and setting in which the training is provided, the core ingredients of the training are the same. Complex social behaviors are broken down into component skills, which are then taught via a combination of modeling (demonstrating) each skill, engaging individuals in role plays to practice the steps of the skill, providing positive and corrective feedback about the persons’ role-play performance, additional role plays to improve performance, and making a plan for the individuals to practice the skill on their own. The steps of group-based social skills training are summarized in Table 7.3. The three general findings of research on social skills training for persons with mental illness can be summarized as follows: 1. People with psychiatric disabilities are capable of learning new social skills and maintaining them over time. 2. Social skills that are learned in one setting show some, but limited, generalization to other settings. 3. Skills training tends to improve the quality of social and leisure-time functioning

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TABLE 7.2.  Coping Strategies for Dealing with Auditory Hallucinations Strategies

Examples

Arousal level Decreasing arousal

Relaxing, deep breathing, blocking ears, closing eyes

Increasing arousal

Getting physical exercise, listening to loud and stimulating music

Behavior Increasing nonsocial activity

Walking, doing puzzles, reading, pursuing a hobby

Increasing interpersonal contact

Initiating conversation, playing a game with someone else

Reality testing

Seeking opinions from others

Cognition Shifting attention

Thinking about something pleasant, listening to the radio

Fighting back

Telling voices to stop

Positive self-talk

Telling yourself, “Take it easy,” “You can handle it”

Problem solving

Asking yourself, “What is the problem?”, “What else can I do about it?”, and so forth.

Ignoring the symptom

Paying as little attention to the symptom as possible

Acceptance

Accepting that the symptom is not going to go away, and deciding to get on with other goals

Prayer

Asking for help in coping from a higher power

Note. Adapted from Mueser and Gingerich (2006). Copyright © 2006 The Guilford Press. Adapted by permission.

but does not have a consistent impact on symptom severity, relapses, or rehospitalizations. Most reviews conclude that social skills training has some, but not a large, impact on symptoms, including negative symptoms of schizophrenia, and social functioning (Turner et al., 2018). Guidelines therefore recommend social skills training for adolescents as well as for adults with schizophrenia (Lecomte et al., 2017; Norman, Lecomte, Addington, & Anderson, 2017). Social skills training also improves social functioning among adults with autism (Dubreucq, Haesebaert, Plasse, Dubreucq, & Franck, 2022). Research has also evaluated the effects of skills training on other areas of functioning. Reviews show that work-­related social skills training improves rates of competitive employment among people with psychiatric disabilities (Smith, Atmatzidis, Capogreco, Lloyd-­Randolfi, & Seman, 2017). Thus, social skills training is one of several psychosocial interventions to improve the social network and functioning of people with mental illness (Barnett et al., 2022). Although one might think that the remediation of cognitive deficits among people with psychiatric disabilities could improve the effectiveness of social skills training, this does not seem to be the case, because improved cognition does not transfer to “real-life” skills (Killaspy et al., 2022).

Self-Help and Peer Support As described earlier in this chapter, peer and self-­advocacy movements played a key role in the development of illness self-­management approaches for people with psychiatric

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TABLE 7.3.  Steps of Group-Based Social Skills Training   1.  Establish a rationale for learning a skill. • Elicit, from group participants, reasons for learning the skill. • Acknowledge all contributions. • Provide additional reasons not mentioned by group members.   2.  Discuss the steps of the skill. • Break down the skill into three or four steps. • Write the steps on a board or poster. • Discuss the reason for each step. • Check for understanding of each step.   3.  Model the skill in a role play. • Plan the role play in advance. • Explain that you will demonstrate the skill in a role play. • Use two leaders to model the skill. • Keep the role play simple.   4.  Review the role play with the participants. • Discuss whether each step of the skill was used in the role play. • Ask group members to evaluate the effectiveness of the role model. • Keep the review brief and to the point.   5.  Engage a person with mental illness in a role play of the same situation. • Start with someone who is more skilled or is likely to be compliant. • Request he or she try the skill in a role play with one of the leaders. • Ask the person questions to make sure he or she understands the goal. • Instruct group members to observe the person with mental illness.   6.  Provide positive feedback. • Elicit positive feedback from group members about the skills of the person with mental illness. • Encourage feedback that is specific. • Cut off any negative feedback. • Praise effort and provide hints to group members about good performance.   7.  Provide corrective feedback. • Elicit suggestions for how he or she could use the skill better next time. • Limit the feedback to one or two suggestions. • Strive to communicate the suggestions in a positive, upbeat manner.   8.  Engage the person with mental illness in another role play of the same situation. • Request that he or she change one behavior in the role play. • Ask him or her questions to check on his or her understanding of the suggestion. • Try to work on behaviors that are most critical and changeable.   9.  Provide additional feedback. • Be generous but specific when providing positive feedback. • Focus first on the behavior that the person with mental illness was requested to change. • Engage him or her in two to four role plays, giving feedback after each one. • Use other behavior-shaping strategies to improve skills, such as coaching, prompting, and supplemental modeling. 10.  Assign homework. • When possible, tailor the assignment to the level of skill of each person with mental illness. • Give an assignment to practice the skill. • Ask group members to identify situations in which they could use the skill. Note. Adapted from Bellack, Mueser, Gingerich, and Agresta (2004). Copyright © 2004 The Guilford Press. Adapted by permission.

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disabilities (also see Chapter 17). Resentment and mistrust of traditional hierarchical and coercive treatment approaches led people with such disabilities to advocate for themselves and to take back control over their own lives and treatments (Clay, with Schell, Corrigan, & Ralph, 2005). Rather than looking to professionals for help, people sought out one another for inspiration in coping with their problems and moving forward in their lives. This focus on self-­reliance has been accompanied by the larger self-help movement, which has spawned numerous books, DVDs, websites, and classes aimed at helping people improve all aspects of their lives, such as physical health, mental health, relationships, financial standing, sports, and sex. For example, within the mental health field, there are numerous self-help books to guide individuals with different psychiatric disorders. There is increasing evidence for the effectiveness of peer support for people with psychiatric disabilities (Killaspy et al., 2022; Lyons, Cooper, & Lloyd-Evans, 2021; Peck, Thangavelu, Li, & Goh, 2023). See Chapter 17 for a more thorough discussion of this kind of support.

Illness Management and Recovery The Illness Management and Recovery (IMR) program incorporates five components of illness self-­management: psychoeducation; behavioral tailoring for medication adherence; relapse prevention training; social skills training for social support; and teaching coping skills for persistent symptoms (Petros & Solomon, 2015). Emphasis on establishing individual recovery goals and pursuing these goals throughout the program has been included in IMR in order to motivate consumers to learn how to manage their psychiatric disability in pursuit of those goals. IMR can be delivered in either an individual or group format; it generally requires 6–10 months to complete, depending on frequency of sessions and level of participants’ impairment (Petros & Solomon, 2015). The curriculum for IMR is organized into nine modules, covering these topics: 1. Recovery strategies 2. Practical facts about mental illness 3. Stress–­vulnerability model and treatment strategies 4. Building social support 5. Using medications effectively 6. Reducing relapses 7. Coping with stress 8. Coping with problems and persistent symptoms 9. Getting needs met in the mental health system Each topic is taught via a combination of educational, motivational, and cognitive-­ behavioral strategies. The IMR program includes educational handouts for participants, a manual for trainers, informational brochures, an introductory video, a training video, a fidelity scale, and outcome measures. A review uncovered seven randomized controlled studies of IMR (Petros & Solomon, 2015). The evidence is mixed because some studies used abbreviated versions of IMR, others had high dropout rates or participants did not attend many IMR sessions. Overall, there was some evidence of positive effects on symptoms, recovery, goal attainment, and psychosocial functioning. One study used an active control group as a comparison (the persons in this group received interpersonal problem solving) and was unable to find any difference in outcomes (Salyers et al., 2014).

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Wellness Recovery Action Plan Wellness Recovery Action Plan (WRAP) is a peer-led program for helping individuals with recurring health and emotional problems develop healthier and more rewarding lives (Canacott, Moghaddam, & Tickle, 2019). It is a structured program in which an individual or group of persons is guided through developing a personal written plan for managing or reducing troubling symptoms, as well as making other desired changes. WRAP is oriented toward helping anyone with physical or mental health problems regain control and balance in life; therefore, it avoids providing information about specific disorders or treatment principles. Rather, as the program’s title suggests, the emphasis is on wellness and health. The WRAP program is divided into seven components, with each including written plans that a person maintains in a workbook: 1. Creating a daily maintenance plan 2. Identifying triggers, early warning signs, and signs of potential crisis 3. Developing a crisis plan 4. Establishing a nurturing lifestyle (e.g., more healthy living) 5. Setting up a support system and self-­advocating 6. Increasing self-­esteem 7. Relieving tension and stress Teaching is typically done through a combination of lecture and discussion, with time taken to complete the plans and receive advice and support. WRAP is usually provided by trained peer providers, who often use their own experiences to inspire other people with mental illness to believe that they can recover their wellness. A review found five controlled trials of WRAP. On average, WRAP led to improved self-­reported recovery outcomes with a small but significant effect; there was no effect on clinical symptoms (Canacott et al., 2019). A recent trial in Hong Kong evaluated a brief self-help version of WRAP with positive effects on depression, anxiety, empowerment, and hope that were mostly sustained at 3-month follow-up (Mak, Tsoi, & Wong, 2022).

Dialectical Behavior Therapy Dialectical behavior therapy (DBT) was developed in the 1980s by Marsha M. Linehan, who disclosed her own history of borderline personality disorder (BPD) in 2011. DBT was originally developed to address self-­injurious and suicidal behavior, and has subsequently been more broadly applied to persons with BPD and with other disorders (Stoffers-­Winterling et al., 2022). Dialectical refers to resolving conflict between contradictory forces through a synthesis of the two. In DBT, dialectics is employed by the practitioner’s combined use of validation and acceptance of people as they are, with strategies aimed at changing behavior and achieving a better balance in personal functioning. Dialectics is also used to help people strike a balance between reasonable mind and emotion mind in striving to develop wise mind, which combines the two in an integrated fashion. Although primarily a psychotherapeutic intervention, DBT is discussed here, as it gives people with BPD a very active role in the therapeutic process and teaches skills that can be used for self-­management later on (the same applies to acceptance and commitment therapy; see next section). In practice, DBT involves several cognitive-­behavioral techniques to improve interpersonal skills (e.g., social skills training), self-­management

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of negative emotions (e.g., cognitive restructuring), and practical problem solving; these techniques are combined with mindfulness-based strategies (e.g., focusing on the present, taking a nonjudgmental stance) aimed at promoting participants’ tolerance of themselves as they are, including unpleasant feelings and thoughts. DBT is typically offered in combinations of weekly individual psychotherapy and group skills training, with counselors providing DBT also participating in weekly case consultation meetings among themselves. Specific guidelines are provided for establishing clear treatment contracts between each person and their individual therapist before beginning the program, and for specifying the nature of and rules concerning additional contacts (e.g., telephone calls regarding thoughts of self-­injury). Although DBT was initially developed to focus on outpatients’ suicidal threats or behaviors, the program was then adapted for inpatients and for persons with BPD and substance use disorders (Bohus et al., 2021). In the decade following the development of DBT and the first controlled trial, it has become a widely implemented program for several different populations. A recent meta-­analysis of DBT was based on 31 RCTs of DBT for people with BPD (Stoffers-­Winterling et al., 2022). Results showed that DBT had significant positive effects on self-harm and psychosocial functioning. DBT is also effective for adolescents with BPD (Wong, Bahji, & Khalid-Khan, 2020); the evidence for its effectiveness for people with BPD and comorbid substance use problems is less clear (Bohus et al., 2021).

Acceptance and Commitment Therapy Acceptance and commitment therapy was developed by Steven C. Hayes in the 1980s and 1990s as another intervention steeped in mindfulness that helps people manage their illness by targeting ineffective control strategies and emotional avoidance (Zhang et al., 2018). A focus on control can be life-­inhibiting, because internal experiences cannot be controlled. Acceptance and commitment therapy seeks to increase psychological flexibility through several processes: diffusion, acceptance, contact with the moment, values and committed action, and self-as-­contact. Acceptance and commitment therapy uses metaphor and paradox to help people understand the limitations of control and the benefits of acceptance and commitment (Zhang et al., 2018). Research on acceptance and commitment therapy has exploded. Recent research reviews have found evidence that acceptance and commitment therapy has positive effects on anxiety, depression, substance use, and OCD (Osaji, Ojimba, & Ahmed, 2020; Soondrum et al., 2022). Acceptance and commitment therapy has been used in both group settings and internet-based or online formats (Ferreira, Mariano, de Rezende, Caramelli, & Kishita, 2022; Han & Kim, 2022; Sun et al., 2022).

MOBILE HEALTH TECHNOLOGIES Mobile or digital mental health interventions (often called mHealth) comprise a rapidly evolving field. To distinguish the many different kinds of programs available, four dimensions are helpful (Gagnon, Sasseville, & Leblanc, 2022): (1) The system a program is based on, such as internet, mobile app, email or SMS, telehealth, virtual reality, chat robots, or social media; (2) its function; that is, decision support, communication (user and health care provider, or peer-to-peer), cognitive-­behavioral or other psychotherapy including gamification, or monitoring by the provider, or as self-­monitoring; (3) the time

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PERSONAL EXAMPLE Jerome Hicks, Revisited: Learning How to Manage His Illness and Get On with His Life To address Jerome’s need for improved illness self-management skills, he was engaged in the IMR program at his community mental health center. The program began with an exploration of the concept of recovery. The counselor described to Jerome different definitions of recovery given by peers, and encouraged him to talk about what recovery meant to him. Jerome didn’t relate very much to the word recovery, because he had his doubts about whether he had an illness in the first place; however, the conversation did lead to identifying some concrete goals that Jerome was interested in working toward, including returning to school and having some friends he could spend time with. Jerome’s counselor then provided basic information about schizophrenia spectrum disorders, including the nature of these disorders and their common symptoms. During this discussion, Jerome made it clear that he didn’t think he had a disorder on the schizophrenia spectrum, though he did acknowledge having “nervous problems” that made him feel anxious around people and sensitive to stimuli in his environment. The counselor said that she understood his concerns, explained that other people also had these kinds of difficulties, and shared that there were effective strategies for reducing their impact on Jerome’s life. After discussing with Jerome some of the symptoms he experienced in relation to his “nervous problems,” the clinician engaged him in a discussion about medication. She and Jerome talked about the different medications that Jerome had taken over the years, and she got Jerome’s perspective about what taking the medications was like for him. Jerome acknowledged that when he took his medication more regularly, he felt less afraid and was less likely to be hospitalized. However, he didn’t like some of the medication’s side effects, including the “nervous feeling” that he felt inside him when he took them. The counselor discussed common medication side effects, and stressed the importance of talking over these side effects with Jerome’s doctor. The counselor then role-played with Jerome how he could express his concerns with the doctor so that changes could be considered in the medications he was prescribed. Attention was also focused on helping Jerome to pursue his personal goals, including returning to school and making friends. The counselor explored with Jerome how learning to manage his “nervous problems” would help him achieve these goals. With respect to school, Jerome looked into taking some classes, and decided to return slowly by auditing a course at a local community college. Jerome also started going to a local consumer drop-in center, where he began to make some friends with people with more interests.

(i.e., asynchronous, for example, by email or chat when texts are written at different times, or synchronous when participants are present at the same time as in a video call); and finally (4) facilitation, which means programs that are entirely or partly facilitated or guided by health care providers or peers versus programs that are unguided and self-­ administered. Much of the work in this arena currently focuses on smartphones (i.e., phones that, among other things, provide easy access to the internet, as well as to global positioning system [GPS] technology in a person’s community). Application software (usually referred to as apps) has developed exponentially in the past decade, providing a huge number of computer options for a smartphone. The National Institutes of Health have

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created an office whose specific charge is development and careful evaluation of mHealth technologies and software. mHealth may serve several rehabilitation goals (Ben-Zeev et al., 2012): 1.  People can use mHealth technologies to obtain preliminary information about psychiatric conditions, the associated disabilities, and possible prognoses. They can also learn about services that have been shown to have an impact on these challenges, as well as interventions that have no evidence base. 2.  This kind of information may then help a person gain a better understanding of and access to service systems. Apps could provide service guides, or information kiosks with GPS capabilities could help people find services in their neighborhoods that address specific concerns. These guides, or kiosks, might include funding information, so that potential service users would know whether they have suitable health coverage for the services provided at a particular agency. 3.  mHealth may support treatment engagement. Providers might use mHealth platforms to provide outreach to those who are difficult to engage. For example, a rehabilitation provider might use text messaging to review aspects of a motivational interview. A recent systematic review found that text messaging increased medication adherence among people with serious mental illness (Simon et al., 2022). 4.  Beyond engagement, mHealth might provide a set of tools for implementing rehabilitation plans. These tools could offer in-the-world opportunities to practice coping skills. For example, they could remind a person struggling with drug abuse about warning signs of relapse, as well as the plan the person might institute should they consider using drugs. Consistent with this idea, a review of 20 RCTs on various mobile and telemedicine interventions for people with opioid use disorders showed some positive effect on opioid abstinence (Kiburi, Ngarachu, Tomita, Paruk, & Chiliza, 2023), and similar positive effects have been found for alcohol use (Caballeria, López-­Pelayo, Matrai, & Gual, 2022). 5.  There is evidence that mobile or digital technologies can be a useful add-on to professionally delivered traditional mental health care. For adults with depression, internet-­ delivered cognitive-­behavioral therapy as an add-on to usual care improved symptoms and remission rates (Jonsson et al., 2022). 6.  mHealth or digital interventions have been successfully applied to a wide range of mental health problems: suicidality (Sarubbi et al., 2022); autism, with benefits for parents as well as for their children (Yosep et al., 2022); recovery in youth (Dallinger et al., 2022); prevention of depression in youth (Noh & Kim, 2023); major depression among adults (Serrano-­R ipoll et al., 2022) or postpartal depression among women (Liu, Huang, Hu, & Wang, 2022; Novick, Kwitowski, Dempsey, Cooke, & Dempsey, 2022), and daily functioning (Jameel, Valmaggia, Barnes, & Cella, 2021); as well as symptoms among people with severe mental illness (Kim, Lee, Jeong, & Jang, 2022). This is a relatively new field of research. Much of the evidence is sketchy, because there is a huge variety of possible digital or mHealth interventions, and the quantity and quality of programs as well as comparison groups differ. mHealth technologies have a couple of strengths as well as weaknesses (Koh, Tng, & Hartanto, 2022). An advantage is that they can offer a safe mode of service delivery during a pandemic; can facilitate access to services for people in remote geographical areas; are a low-­threshold source of support

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that avoids labeling issues and the fear of stigma associated with using traditional mental health services; and can speed up service use as many mHealth technologies are available without waiting times. However, there are also a number of problems and challenges: Privacy and confidentiality can be a concern, depending on the type of technology used and the kind of information shared. Digital technologies are likely to increase the digital divide in the sense that people living in poverty or those who are homeless may not be able to use them. Safety is an issue in emergencies such as suicidal crises, especially in unguided programs. Many of the apps and programs are not evidence based: A study of mobile apps for mood disorders found that only a very small minority was backed by robust evidence (Eis et al., 2022). A review of apps for schizophrenia reported that most apps could not be accessed, and among the accessible apps, many offered inaccurate, dated, or stigmatizing content (Kwon, Firth, Joshi, & Torous, 2022). Unfortunately, most apps are developed without an active role of people with lived experience of mental illness, although such coproduction would likely improve their acceptability and effectiveness. Finally, there is the yet unresolved question whether humans should guide or at least be involved in the delivery of mobile or online interventions (Chivilgina, Elger, & Jotterand, 2021). Currently, guided web-based interventions have better adherence rates than unguided ones (Musiat, Johnson, Atkinson, Wilksch, & Wade, 2022) and appear to reduce symptoms more effectively (Koelen et al., 2022). Future research will show whether artificial intelligence and machine learning algorithms can improve those programs that are not guided by humans (Zhou, Zhao, & Zhang, 2022); even if this works on average, it remains a difficult ethical question whether we want information technology (IT) algorithms to react to individual crises such as acute suicidality (Gooding & Kariotis, 2021).

EARLY INTERVENTIONS Most mental illnesses (except dementias) begin early in life: anxiety disorders, autism, and attention-­deficit/hyperactivity disorder (ADHD), on average, in early adolescence, followed by eating disorders, OCD, and cannabis use in late adolescence/early adulthood, and by schizophrenia and bipolar disorders at above 20 years of age on average (Solmi et al., 2022). This early onset and the common recurrent course explains the large personal and socioeconomic impact of mental disorders. Since treatment cannot alleviate all symptoms, prevention is key. A specific form of secondary or indicated prevention is early intervention for children or youth who are at risk of developing a mental illness or show early attenuated symptoms or signs of psychological distress. Best known is the so-­called “risk of psychosis syndrome” when youth have brief or subthreshold symptoms reminiscent of psychosis that do not (yet) fulfill diagnostic criteria of schizophrenia (Catalan et al., 2021). There is good evidence of the success of early intervention for youth at risk of psychosis or with first-­episode psychosis compared to treatment as usual: A large U.S. study evaluated a complex intervention that consisted of medication management, resilience-­ focused therapy, supported employment, and family psychoeducation. The intervention led to improvements in terms of quality of life, functioning, and reduced psychiatric hospitalizations during intervention (Srihari et al., 2015). However, these effects diminish over time after the intervention has ended; thus, the long-term effectiveness of early intervention for risk of psychosis is not at all clear (Hyatt, Hasler, & Wilner, 2022). Another challenge for early intervention is that many early symptoms are unspecific.

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For example, youth at risk of psychosis often have anxiety or depressive symptoms that may or may not progress into psychosis. Therefore, experts call for a transdiagnostic approach that helps youth with mental health problems deal with a wide range of symptoms (Shah, Jones, van Os, McGorry, & Gülöksüz, 2022). Finally, early intervention services for any kind of mental health problems should avoid unnecessary labeling of those who seek help or advice in order to facilitate help seeking and to reduce the potential (self-)stigma and discrimination as a consequence of being labeled as “mentally ill” (Rüsch et al., 2014).

SUMMARY AND CONCLUSIONS People with psychiatric disabilities should play the central role in the pursuit of their goals. Facilitating illness and wellness self-­management skills is crucial to accomplishing this. There are psychological benefits when people become more self-­reliant in dealing with their illness and capable of handling their own affairs. Improved illness self-­management is particularly important to the goals of rehabilitation and recovery, because it can minimize the disruptive effects of relapses, rehospitalizations, and persistent symptoms on people’s lives. Research on specific components of illness and wellness self-­management indicates that various combinations of interventions are effective for producing different outcomes. Psychoeducation may be useful for improving personal understanding of psychiatric disability and its treatment, but it has limited impact on the course of illness. Indicated prevention for young people at risk of mental disorders has shown at least short-term benefits. Relapse prevention enjoys strong empirical support, as does cognitive-­behavioral therapy for reducing distress and severity of persistent symptoms, including depression, anxiety, and psychotic symptoms. The different components of illness and wellness self-­management have been incorporated to varying degrees into comprehensive programs and approaches. Internet-based or mobile interventions become increasingly important. In addition, many of these components are incorporated into family psychoeducation programs aimed at teaching people, and their natural supports, how to manage psychiatric disabilities.

CHAPTER 8

Care Coordination

M

ost people with psychiatric disabilities need far more than mental health treatment in a clinic or office to achieve their goals. They need a range of community services and supports, including housing, medical care, and fi nancial benefits. In the late 1970s, the National Institute of Mental Health (NIMH) established the Community Support Program as a model of comprehensive services to meet needs of those discharged from psychiatric hospitals (Turner & TenHoor, 1978). Care coordination was designed to be the “glue” of the system, serving the centralized functions that would ensure people received the services and supports that they needed when they needed them (Stroul, 1993). Congress then passed the State Comprehensive Mental Health Services Plan Act in 1986; this law required states to develop comprehensive service plans for adults with serious mental illness in order to receive federal mental health funds. State plans had to include provisions for the delivery of care coordination to all of those in this population who received substantial public funds; this was to be achieved by 1992. Conversely, the private sector, under the guise of behavioral health managed care, employs care coordination to control increasing health care expenses. Care coordination in this context does not provide services; rather, it functions as a utilization review mechanism to manage the allocation of scarce and costly resources by limiting access to services and substituting lower-cost service options for higher-cost ones, such as outpatient therapy rather than hospitalization (Sledge, Astrachan, Thompson, Rakfeldt, & Leaf, 1995). This use of care coordination is somewhat antithetical to service models whose primary focus is to ensure that those with psychiatric disabilities receive the interventions and resources that they need. This chapter focuses on care coordination as a service rather than as a cost containment strategy. The chapter defi nes care coordination and its goals, objectives, and functions; describes the various models of care coordination that have been employed for persons with psychiatric disabilities; reviews research on the effectiveness of care coordination models; and discusses concerns about care coordination.

WHAT’S IN A WORD? The topics discussed herein have traditionally been known as case management—words that some commentators have viewed negatively (Everett & Nelson, 1992). Case seems 153

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PERSONAL EXAMPLE Lynn Smith Is Helped by Brokered Care Coordination Lynn Smith is a 58-year-old single woman diagnosed with schizophrenia. She had been hospitalized off and on since she was in her mid-20s. Lynn lives at her family home. Lynn’s father died in 2015. Her mother continued to care for Lynn until a few months ago, when she fell ill and was hospitalized. Her mother died about a month later. Lynn has been involved with mental health services for many years. She attends a program at a local mental health center a few days a week. Lynn takes Clozaril to help with the symptoms of her schizophrenia. Every 2 weeks she goes for bloodwork. She also has a thyroid disorder and some digestive problems, for which she takes other medications prescribed by a family physician. She has a care coordinator at the mental health center, who checks in regularly with Lynn to see how she is doing. Until Lynn’s mother’s death, Mrs. Smith took Lynn to doctors’ appointments or arranged for paratransit services, cooked, and maintained the home. If Lynn needed assistance with referrals for care or resources, her mother would contact the care coordinator. Up to now, Lynn has been well maintained in the home and has been adherent to her medications. With her mother’s death, however, some changes will need to be made to Lynn’s services.

to reduce a person to a sterile manila folder. Management suggests that some outside strategies are needed to make certain that each case stays on some predetermined course; it also suggests that people are the ones who need to be managed, rather than the many services they need. Although case management continues to be a prominent term in the service system, it is viewed here in terms of its broader and more recovery-­focused goals. Rehabilitation providers need to help a person with disabilities understand the breadth and depth of possible care, and then help that person to coordinate the diverse services that go into this process.

Defining Care Coordination Care coordination is the process of assessing, organizing, and ensuring receipt of services that assist individuals with psychiatric disabilities to meet their multiple and complex needs in an effective and efficient manner (Dieterich et al., 2017; Lim et al., 2022). Services are provided to ensure continuity of care over the long term (Gaebel, Kerst, et al., 2020). Care coordination provides a single point of accountability for assisting people in receiving the services they need (Gaebel, Kerst, et al., 2020). Usually, care coordination is provided by an individual care coordinator, but it may also be accomplished by a team. Care coordination is an integral competency of a good counselor, and this type of involvement is essential to comprehensive assessment of each person’s needs, as well as to subsequent plans for addressing these needs (Leahy et al., 2019). Care coordination is generally viewed as affecting the person’s external world, but, over time, it may influence the person’s internal abilities to cope in the community by teaching problem-­solving and negotiating skills. However, many of the models of care coordination do not provide psychotherapy, but simply supportive counseling. Similarly, models differ in the extent to which they have a rehabilitation focus and employ rehabilitation technologies. Basic care coordination, exemplified by the brokerage model (discussed later in this chapter), merely

8.  Care Coordination 155 

maintains the original intent of ensuring that the person’s critical needs are identified and services to address them are delivered.

The Importance of Community Services Care coordination occurs in a person’s community, though it may begin while the person is hospitalized for psychiatric illness. Although psychiatric rehabilitation is almost always understood as helping the person address their goals in the world, some people in great distress may need a hospital stay. Rehabilitation and case coordination continue to be paramount even during an inpatient stay, however. In this case, the inpatient team works closely with the person and their rehabilitation team to coordinate the collection of services when the person returns to the community. Community services do not “take a break” when a person is admitted for a hospital stay. The rehabilitation team makes regular visits to the person and has a central role in their inpatient treatment and return to the community.

CARE COORDINATION’S GOALS, OBJECTIVES, AND FUNCTIONS Care coordination can be understood in terms of the fundamental goals, objectives, and functions summarized in Figure 8.1. Major goals of care coordination include (1) maintaining contact with services; (2) reducing length of stay when hospitalization occurs; (3) providing rehabilitation to promote psychosocial functioning at the highest level at which the individual is capable; and (4) improving the quality of life for persons with psychiatric disabilities, as well as their family caregivers (Dieterich et al., 2017; Gaebel, Zäske, et al., 2020; Isaacs, 2022; Isaacs, Beauchamp, Sutton, & Maybery, 2019; Lim et al., 2022). These goals are achieved through four basic service objectives:

• Continuity of care, or receipt of comprehensive services over the long term. • Accessibility, or receipt of services when and where the person needs them. • Accountability, or ensuring the intended effect for the services provided. • Efficiency, or delivery of services in the appropriate sequence, resulting in economical service provision.

Better outcomes occur when care coordination assumes primary responsibility for rehabilitation, treatment, and support; utilizes natural supports in the community rather than

Goals

Objectives

• Maintaining contact • Reducing length of hospital stays

• Providing

rehabilitation

• Improving quality

• • • •

Continuity of care Accessibility Accountability Efficiency

Functions

• • • • •

Assessment Planning Linkage Monitoring Advocacy

of life

FIGURE 8.1.  Goals, objectives, and functions of care coordination.

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mental health services; and delivers these services wherever the person with a psychiatric disability is. There is a high degree of consensus about the five basic functions performed by care coordinators in serving those with psychiatric disabilities: assessment, planning, linkage, monitoring, and advocacy (Center for Substance Abuse Treatment, 2015; National Academy of Certified Care Managers, 2022):

• Assessment requires comprehensive evaluation of the strengths, deficits, problems,

and needs of a person with psychiatric disabilities. It also requires gathering information from different sources, including the individual, other treatment facilities, and significant support system members. (See Chapter 5.) • Planning is the development of services to meet a person’s needs. In keeping with a recovery orientation, the individual is a major partner in the development of this plan, and the plan is centered on the person’s strengths. The plan identifies needs, specific services, resources, supports to address these needs, and behavioral steps to implement the plan. • Linkage is connecting persons with the services, supports, and resources in the implementation of their plans. This means more than making referrals to services; it also includes assisting individuals in accessing these services by accompanying them or by arranging for others to help. • Monitoring is ensuring that services, supports, and other resources are received. Corrective actions are undertaken when obstacles are encountered. • Advocacy includes the use of formal channels whenever necessary to obtain resources and services to which people with psychiatric disabilities have legal and ethical rights. These people may be mistreated in the process of trying to obtain services. Formal and informal strategies are employed to make necessary system changes that ensure receipt of supports. Furthermore, services that are individualized, including assertive outreach, address a broad diversity of life domains. In addition, they involve small caseloads, which are key for producing positive outcomes. These services may also need to be time-­unlimited given the long and cyclical nature of psychiatric disabilities. Although short-term gains can be attained with care coordination of limited duration, research indicates that these gains do not seem to be sustainable on a long-term basis. Finally, given the cyclical nature of psychiatric illnesses, persons with psychiatric disabilities may need emergency services available 24 hours a day, 7 days a week.

MODELS OF CARE COORDINATION There are seven models of care coordination: (1) brokered care coordination, (2) clinical care coordination, (3) strengths-based care coordination, (4) rehabilitation care coordination, (5) assertive community treatment (ACT), (6) intensive care coordination (ICC), and (7) peer-­provided care coordination (see Table 8.1, later in the chapter). Each model is described, some in far more detail than others. ACT is discussed most extensively, as it is the most publicized model in terms of the scholarly literature, the most widely researched of all the models, and the model that is considered an evidence-based practice. The others have been researched on a more limited basis.

8.  Care Coordination 157 

Brokered Care Coordination Brokered care coordination is the most basic of models and among the first to be developed in response to the deinstitutionalization movement (Solomon, 1992). In this model, care coordinators limit their work to the basic tasks listed in Figure 8.1. Essentially, a brokered care coordinator assesses an individual’s needs, plans for how these needs are to be addressed, assists in linking the person with the range of required services, and coordinates the various service providers. This model also includes service monitoring to ensure receipt of referred services and, when necessary, to advocate on the person’s behalf to obtain available services. Much of this work is conducted in the office by means of referrals or phone calls. Brokered care coordinators do not engage in therapy but mostly act as enablers and facilitators (Rosenberg & Rosenberg, 2013). Given these functions, these coordinators tend to have large caseloads and to depend on the existing community service system. Brokered care coordinators need to be knowledgeable about existing services. Due to large caseloads and consequent lower costs, this model is one that continues to be widely practiced. Given the intensity of the efforts required to engage individuals with psychiatric disabilities successfully in services, and to find and develop supports and resources for them, care coordinators who restrict their work to information sharing and referral are unlikely to be successful (Gaebel, Kerst, et al., 2020). Such coordinators often end up responding to crisis situations rather than being proactive and goal-­focused. The brokered care model is often not provided in its purest form; elements from other models may be combined with these basic functions (Rosenberg & Rosenberg, 2013).

Clinical Care Coordination Clinical care coordinators act as counselors and therapists, as well as providers of basic coordination. The model integrates the administrative functions of care coordination with clinical services (Moore, 2009). Clinical care coordinators assist people in functional skills and psychological growth by means of skills training, problem-­solving techniques, and psychoeducation. Clinical care coordinators provide services in four domains: (1) an initial phase of engagement, assessment, and planning; (2) environmental interventions, which include linkage to services and resources, as well as support and consultation to formal and informal members of the social network; (3) person-­focused interventions, which may include intermittent individual therapy, training in daily living skills, and psychoeducation; and (4) a person–­environment focus, crisis services, and monitoring. Sullivan and Rapp (2002) have noted that clinical care coordination does not work well in reality. Most therapists do not have the time or inclination to engage in brokering care activities.

Assertive Community Treatment ACT was created in Madison, Wisconsin, in the 1970s as a community-based alternative to psychiatric hospitalization (Marx, Test, & Stein, 1973). The intention of ACT was to transfer all of the functions of a long-term psychiatric institution into the community; it was therefore often called a “hospital without walls” (Stein & Test, 1980). In its initial implementation, hospital staff members were actually transferred to the community (Test, 1998). Original tenets of the model included the following:

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• The community, not the hospital, should be the primary locus of care for persons with psychiatric disabilities, because the community is where these persons face daily, ongoing stressors. • Treatments and supports in the community must be comprehensive, potentially addressing all areas of life. • Treatment and care must be flexible and highly individualized to address the vast heterogeneity of people with psychiatric disabilities, as well as their changing needs over time. • Comprehensive and flexible treatments and supports must be organized and delivered to reach persons with psychiatric disabilities efficiently.

Central to ACT is the continuous and multidisciplinary treatment team. The team usually includes a psychiatrist, a nurse, and at least two care coordinators; frequently, social workers, peer support specialists, and family specialists are team members as well (Thorning & Dixon, 2020; Dartmouth Assertive Community Treatment Scale [DACTS], 2017). The ratio for these teams is about 1 staff member to 10 participants, but teams usually consist of 10–12 staff members serving a total of about 120 persons with psychiatric disabilities (DACTS, 2017; Rochefort, 2019). Additional staff positions are contingent on the team’s goals and the nature of participants’ needs. For example, a vocational specialist may be a team member if employment is an important goal for many participants. Given the high prevalence of substance use disorders among those with psychiatric disabilities, the model also prescribes staff members with substance abuse treatment skills (DACTS, 2017). In the ACT model, the team, and not some other provider, is the primary source of rehabilitation and social services required by the persons with psychiatric disabilities. ACT teams are self-­contained, comprehensive programs that essentially provide all services a person needs. Teams meet daily to exchange the most recent information about participants. ACT provides an integrated approach to service delivery that is individualized to the needs of each person. ACT teams provide medication, supportive therapy, problem-­solving skills training, and crisis intervention, as well as assistance with housing and finances, work rehabilitation, and anything else that is critical to living successfully in the community. The team uses assertive outreach to provide services wherever a person with a psychiatric disability is located (Thorning & Dixon, 2020). The team is available 24 hours a day, 7 days a week. ACT operates with a nontermination policy: People who fail to appear for appointments are not terminated from the program, as is sometimes the case in other models. In addition, ACT provides time-­unlimited services. This principle may be modified for those who demonstrate substantial improvement. However, a step-down transfer process is used to ensure continuity of care, as well as possibility of the individual’s returning to ACT should this be deemed necessary (DACTS, 2017). There are variants of ACT teams that serve specialized populations or add a specific service focus. ACT has been adapted for veterans, older adults, youth, and people with intellectual disabilities (Thorning & Dixon, 2020). Another variant is a forensic ACT team that has been developed for community reentry or diversion from the criminal justice system (Rochefort, 2019). This model is discussed in Chapter 14. A third, enhanced model is family-aided ACT, which adds multifamily group psychoeducation (Melton & Dykeman, 2016). The specifics of family-aided ACT and other forms of multifamily group treatment are discussed in Chapter 12. A final approach has used teams composed of peers to provide ACT (Wright-­B erryman, McGuire, & Salyers, 2011; see

8.  Care Coordination 159 

Chapter 17). Cognitive adaptation training has also been combined with ACT. Cognitive adaptation training (see Chapter 13 for a fuller discussion) integrates neuropsychology, behavioral counseling, and occupational therapy principles to teach people how to compensate for cognitive impairments in order to improve social functioning. This form of ACT includes the development of environmental supports to fit a person’s specific needs (Allott, Killackey, Sun, Brewer, & Velligan, 2016).

Intensive Care Coordination ICC (more commonly known as, and still sometimes called, intensive case management) emerged to serve individuals with heavy use of mental health services (Lim et al., 2022). ICC is sometimes referred to as assertive outreach, because it employs some aspects of ACT, including delivering services in the community, having low caseloads, and assisting in meeting the daily needs of program participants. ICC services are typically delivered by an individual care coordinator; there are no shared caseloads. Interestingly, there seems to be no consensus on the essential ingredients of the model (Dieterich et al., 2017). But ICC became more widely implemented as it became apparent that individuals with psychiatric disabilities needed more than mere brokering services. Therefore, the aspects of more assertive care coordination and community service provision were incorporated into a basic brokered care coordination service (Dieterich et al., 2017).

Critical Time Intervention Critical time intervention (CTI) was developed for individuals at high risk of homelessness during periods of transition between institutional and community care, such as during release from inpatient hospitalization or incarceration (Ponka et al., 2020). Like ACT, services involve navigating care systems, assessment, planning, and use of community supports. However, CTI is limited to the time period (usually about 9 months) of the housing transition, and services are not usually team-based. Caseload ratios are somewhat higher (around 25) than in ACT, with a focus on engaging individuals before the transition to conduct a needs assessment and transition plan (Manuel et al., 2023; Ponka et al., 2020). Services focus most heavily on housing, mental health, substance use, and employment. CTI includes a fidelity scale and has been extensively evaluated for individuals with psychiatric disabilities in recent years (Manuel et al., 2023).

Peer-­Provided Care Coordination People with psychiatric disabilities have been recruited as peer providers of care coordination. Peer care coordinators are people further along in their recovery from psychiatric disabilities (Wright-­B erryman et al., 2011). By virtue of their own lived experience, peer coordinators may have a better appreciation of hurdles to a person’s goals and the relative strengths of different approaches to those goals. Peers may provide care coordination in peer-­operated services, which are freestanding and wholly operated by individuals with psychiatric disability; in peer partnerships, which are services provided by peers and nonpeers; and peer employee services, which are more traditional rehabilitation programs into which people with psychiatric disabilities are hired to provide care coordination (Fortuna, Solomon, & Rivera, 2022). Again, peer services are summarized more fully in Chapter 17. A consensus about the active ingredients of care coordination has emerged as a result of syntheses of these varied models (see Table 8.1).

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PERSONAL EXAMPLE Lynn Smith, Revisited: More Intensive Care Coordination Needed Lynn is still in the family home; the care coordinator has arranged for a part-time home health aide to help with general day-to-day care. However, this is a short-term solution, because Lynn cannot remain in the home. At this point, Lynn needs ICC to assist in finding her another housing arrangement, helping her to cope with the move, and providing the ongoing daily management that was previously provided by her mother. Unfortunately, Lynn has not learned skills for living independently, so the type of care coordination services she will need will depend on the type of housing arrangement she finds. With supported independent housing, Lynn will need ICC to help her access resources and supports, and maintain her home. Should Lynn be placed in a community residential rehabilitation facility, she is likely only to need brokered care coordination service, as was the situation before her mother’s death.

OUTCOME RESEARCH Reviews focusing on models of care coordination other than ACT—usually brokered care coordination—have yielded seemingly sobering conclusions. Reviews and meta-­analyses have categorized care coordination as either intensive or nonintensive, with models such as ACT and ICC typically labeled as intensive due to low caseload sizes and frequency of contact (Dieterich et al., 2017; Lim et al., 2022). Less intensive models such as brokered care show few benefits (Ponka et al., 2020). ACT, CTI, and ICC all have impacts on housing stability and emergency room usage (Ponka et al., 2020). ICC was associated with increased financial stability and reduced substance use. However, there was little change in psychological symptoms or quality of life for any of these models. A systematic review found 13 CTI studies, including 10 with randomized designs (Manuel et al., 2023), that demonstrated a reduction in homelessness and increased engagement in services for those involved with CTI. Other reviews point to factors besides care coordination per se that may affect outcomes. An environmental context in which care coordination is embedded, and resources are readily available, is extremely important to models of care coordination (Bond & Drake, 2015; Thorning & Dixon, 2020). Also, care coordination may not be equally effective for all persons with psychiatric disabilities; some benefit, while others may not (Dieterich et al., 2017). Research on ACT suggests a great deal of consistency with regard to its outcomes. ACT seems to help people with psychiatric disabilities engage in services by increasing housing stability, reducing hospital admission and length of stay, and promoting high personal and family satisfaction (Ponka et al., 2020; Dieterich et al., 2017). A few reviews have concluded that there is improvement in symptomatology and quality of life, but most reviews find little effect of ACT on social functioning. Reviewers have noted that greater fidelity to the original intervention yields better outcomes (Dieterich et al., 2017). Some reviewers have questioned whether increased adherence to medication may act as a mediator to reduce hospitalizations, but surprisingly few studies have assessed medication adherence per se (Dieterich et al., 2017). Few studies report on employment, and those that did saw no relationship between intensity of services and employment outcomes. Another review examined the impact of peer providers as part of

8.  Care Coordination 161 

the ACT team (Wright-­B erryman et al., 2011). Findings were somewhat mixed: On the one hand, results suggested that participant engagement was better when services were provided by peers; on the other hand, peer ACT was not found to have effects beyond those of standard ACT on symptom reduction or quality of life. Despite the accumulation of research reflecting positively on ACT, some research in the United Kingdom has obtained more negative results. A large-scale study with more than 700 participants in four sites for over 2 years found no difference between ACT participants and controls in hospitalization rates (Burns et al., 1999). Others wondered whether these poor findings emerged because ACT was not implemented according to a well-­specified manual (Fiander, Burns, McHugo, & Drake, 2003). However, a more

TABLE 8.1.  Key Features of Seven Models of Care Coordination Brokered care coordination

• Basic functions: Assessment, planning, linking, monitoring, and advocacy • Mainly service referrals • High client–staff ratios • Primarily office-based services Clinical care coordination

• Basic brokered functions plus clinical care • Intermittent provision of psychotherapy • Skills training and psychoeducation • Provision of environmental supports and resource acquisition Strengths-based care coordination

• Identification of each person’s strengths • Use of natural community resources • Resource acquisition skills taught to participants • Group supervision of care coordinators Rehabilitation care coordination

• Rehabilitation goals of participants’ choice • Functional assessment • Skills training • Resource acquisition skills taught to participants Assertive community treatment (ACT)

• Multidisciplinary team • Shared caseloads • Low client–staff ratios • Assertive outreach • Services delivered in the community • Time-unlimited services • Team provision of social services, rehabilitation, and psychiatric treatment to meet participants’ needs, including medication management

Intensive care coordination (ICC)

• Assertive outreach • Services delivered in the community • Low client–staff ratios Peer-provided care coordination

• Peers (people with lived experiences with serious mental illness) as service providers • Peers: People in recovery whose journeys can help those struggling with disabilities and goals

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recent U.K. review of studies in which providers closely followed ACT guidelines also failed to find any significant changes in hospital care over 18 months: Burns (2010) examined the relationship between careful provision of ACT and outcomes in a meta-­analysis of 64 studies. His findings did suggest that quality of outcomes was related to model fidelity (the degree to which providers adhered to the ACT manual). It is unclear whether the differences in U.S. and U.K. findings represent a cultural phenomenon; variations in disabilities and practices between the two nations might explain the different results. If so, this would be an example of cultural factors’ influence on the practice of rehabilitation. In response to issues with ACT efficacy in the United Kingdom and Europe, researchers in the Netherlands adapted ACT to respond to changing needs of service users (Van Veldhuizen, 2007). Called flexible ACT, this model uses a multidisciplinary team like ACT, but offers two care levels that change based on the person’s current needs. In a lower level of care, flexible ACT recipients are offered individual case management services. When recipients experience an increase in symptoms, life stressor, or transition time, they can be swiftly shifted to a more intensive approach in which more frequent, team-based supports are in place. This model has since replaced ACT as the prevailing care coordination method in several European countries (Munch Nielsen, Hjorthøj, Arnfred, & Nordentoft, 2022). Nugter, Engelsbel, Bähler, Keet, and van Veldhuizen (2016) followed 372 participants of flexible ACT for 2 years, showing good model fidelity. Flexible ACT participants had decreased hospitalization, fewer unmet needs, and increased quality of life during the study. A quasi-­experimental study in Denmark compared participants at sites that had transitioned to flexible ACT with those that continued to provide ACT (Munch Nielsen et al., 2022). While the groups differed at baseline, making it difficult to compare outcomes, there were no differences in working alliance or satisfaction between the two models. Ponka and colleagues (2020) evaluated the cost-­effectiveness of approaches to care coordination for people with mental illness who were homeless or at high risk of homelessness; they found that standard care coordination services (the least intensive level) was not cost-­effective in comparison to ACT; it was more costly, since there were more outpatient services and arrests in that group, while participants in standard care coordination had lower quality of life and less time in stable housing. ICC shows promise for cost-­effectiveness, since costs are related to emergency housing and health care (Ponka et al., 2020). ACT interventions had reliably better outcomes than usual treatment, along with lower costs. A cost-­effectiveness study (Maeng et al., 2023) examined a forensic-­focused version of ACT as compared with ICC. Participants in flexible ACT had fewer days hospitalized, such that for every $1 invested in the flexible ACT program, an estimated $1.50 was saved.

CONCERNS REGARDING CARE COORDINATION There have been criticisms leveled at care coordination in general, with some being directed specifically at ACT. Some commentators believe that ACT is coercive and paternalistic, creating dependence as opposed to independence (Rochefort, 2019). Practices such as daily home visits, medication checks, and “no dropout policies” might feel intrusive. In one study, individuals participating in an ACT program who were exposed to limit-­setting interventions had poorer outcomes than those who were not exposed to the same strategies (Rosenheck & Neale, 2004). Employment of these strategies probably has to do with the nature of the population, the expertise of the providers, and the available treatment options, rather than the model of care coordination per se (Solomon

8.  Care Coordination 163 

& Draine, 1995). More recently, ACT has strayed from original ideals of time-­unlimited services and has made efforts to incorporate recovery principles into programming (Bond & Drake, 2015). Generally, people with psychiatric disabilities and their families seem satisfied with care coordination; however, a recent review found few studies that collected satisfaction data and comparisons between models (Dieterich et al., 2017). One study found individuals served by ACT teams to be reasonably satisfied, although they did express some concerns (Redko, Durbin, Wasylenki, & Krupa, 2004). Some individuals did not like relating to so many service providers, did not feel that all of the providers knew them, and found it cumbersome dealing with so many staffers. Also, people disliked what they viewed as the intrusive, controlling nature of ACT, believing that they need not be visited so frequently. Positive remarks were made about the availability of the team members and about home visits, however (Redko et al., 2004). McGrew, Wilson, and Bond (1996) found that people served by ACT teams valued staff members’ availability and the alliance with their care coordinators. Consistent with these findings, Krupa et al. (2005) found that people valued one primary relationship with a team member; for some, it was the only positive helping relationship in their lives.

SUMMARY AND CONCLUSIONS Care coordination is an essential service for helping many persons with psychiatric disabilities to meet the complex goals in their community. ACT seems to yield better outcomes than other care coordination models do, although some commentators have raised concerns about it as well. The design of ACT makes good clinical sense for those with psychiatric disabilities; consequently, it has been the building block for other interventions for this population, such as supported housing, supported employment, and dual-­diagnosis programs (Bond & Drake, 2015). The appropriate care coordination model for a given individual may change as circumstances change. There is a need for agency support of coordinators, as research has found that a lack of perceived organizational support for care coordination leads to job stress (Hannigan, Simpson, Coffey, Barlow, & Jones, 2018). Care coordination is a highly stressful job that requires a supportive environment to retain well-­qualified care coordinators. With high turnover rates of care coordinators, as is the situation in many places, the establishment of positive working relationships between care coordinators and participants becomes attenuated.

CHAPTER 9

Medications

P

sychiatric medication is an important part of treatment for addressing the challenges of acute episodes of severe mental illness, as well as decreasing relapses. Rehabilitation providers help people with psychiatric disabilities make ongoing decisions about their medications. They may do this by connecting people with medical professionals who consult with them about managing their prescriptions. In addition, rehabilitation providers use strategies that assist people in making decisions about their treatment plans (Taylor et al., 2021). A basic understanding of the clinical and side effects of the major classes of psychiatric medication helps rehabilitation providers in these tasks. Many people with psychiatric disabilities are also under medical care for physical illnesses. In fact, people with serious mental illness have a higher rate of sickness than same-age people without mental illness (see Chapter 15). Although this chapter does not review nonpsychiatric medications, rehabilitation providers may assume similar roles in helping people make decisions about all medical treatments (Taylor, 2021). Medications and psychosocial treatments are often combined. Providers should not conclude, for example, “There’s no point in providing supported employment to Harry, because he is on antipsychotics,” or “Don’t consider antidepressants, because Mary is receiving cognitive-behavioral therapy.” The best rehabilitation plans help persons integrate approaches; many people need both medications and psychosocial treatments. Specific decisions about these approaches will change over time. Rehabilitation providers must be vigilant to the dynamic nature of treatment plans, helping the persons with disabilities stand at the forefront of their own plans.

ROLES FOR PSYCHIATRIC REHABILITATION PRACTITIONERS Several professions prescribe psychiatric medications. Psychiatrists are especially expert in this task. However, other physicians also prescribe psychiatric medications; indeed, primary care providers are the most common prescribers of these kinds of drugs. Typically, primary care providers will refer people with significant mental health disabilities to psychiatrists for medication management, given the complexity of these individuals’ medical plans. Nurse practitioners with specializations in mental health can prescribe these kinds of medications in many states; clinical psychologists with special postdoctoral 164

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training also have prescription privileges in a few states. It is important to remember that these professionals may also be rehabilitation providers. For example, ACT programs (see Chapter 7) often have psychiatrists or nurses on their teams. Rehabilitation providers, however, are typically drawn from nonmedical professions or paraprofessions. Hence they have restricted roles in medication management; for the most part, they help people with disabilities make informed decisions about their prescriptions. To do this, they should have a working knowledge of medications, their therapeutic actions, and their side effects.

MEDICATION EFFECTS The modern era of psychotropic medications began after World War II, with the finding in France in 1950 that a compound called chlorpromazine quelled the frightening voices and paranoid ideas of many people with schizophrenia, and the observation in Australia in 1948 that lithium muted the wild mood and energy cycles of many people with what was then called manic–­depressive illness. Since that time, there has been a proliferation of medications for the major psychiatric disorders: schizophrenia, bipolar disorders, major depression, and anxiety and related disorders (Taylor et al., 2021). However, there has not been a lot of progress since the 1990s (Hyman, 2013). Effective medications are now available to alleviate the symptoms of severe mental illnesses. To be marketed in the United States, medications must be approved by the U.S. Food and Drug Administration (FDA). Pharmaceutical companies are required to demonstrate a new medication’s basic safety and efficacy in placebo-­controlled trials before they receive a license to market the medication. FDA approval requires that a medication be more effective than placebo (a “sugar pill”) for a specific condition in at least two independent RCTs. Placebo controls are used to ensure that medications, rather than expectations or natural course of the illness, account for the improvements. To give a rough idea of the magnitude of the

PERSONAL EXAMPLE Antwan Johnson Uses Medicines Inconsistently Antwan Johnson is a single, 24-year-old Black male with a diagnosis of schizophrenia. He has had two psychotic episodes and hospitalizations, but none for the past year. He is struggling to find a job while keeping up with his apartment and girlfriend. He has been prescribed one of the relatively new antipsychotic medications, but he has concerns about weight gain and sexual problems, both of which he has experienced in the past. Antwan is also worried about diabetes and heart disease, which he has heard might be caused by medications. His social worker, employment specialist, nurse, and doctor have all emphasized repeatedly that he may need to stay on his medications to avoid another episode of illness and hospitalization. They frequently ask him whether he is still taking his medications. However, he has also been cautioned by family members and some friends at the mental health center about medication. He is worried about long-term side effects, as well as the current problems he is experiencing related to medications. He frequently skips doses and sometimes goes for days or weeks without taking medications; he says he feels better when he is not using them. Antwan has been advised by his friends, and has learned from experience, not to tell his providers when he skips medications.

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efficacy of current medications, consider that about 70% of people with symptoms of major depression respond to an efficacious antidepressant, compared to about 40% in a control group who respond to placebo (Furukawa et al., 2016). Similarly, in a 1-year follow-up, about twice as many people with schizophrenia will experience a psychotic relapse if they are taking a placebo (61%) as compared to those taking an antipsychotic medication (24%) (Ceraso et al., 2022). These figures vary from study to study and with regard to specific medications and situations, but findings are often in the range of a 2:1 or 3:2 response ratio for medication versus placebo. Finding current information on specific medications and guidelines for use is a critical, everyday task for rehabilitation providers. The staff of many rehabilitation programs includes psychiatrists or psychiatric nurse practitioners who can serve as resources for nonmedical counselors in the field. There are widely available references, too, but they need to be used with caution. Reliable online resources include the Physicians’ Desk Reference (www.pdr.net) and WebMD (www.webmd.com) websites. The information available online from the pharmaceutical industry may sometimes be more advertisement than education. Using the internet can also be misleading, because the rapidly proliferating health information sites are not regulated and screened for accuracy. Thus, although the internet has become a source of information, much of it is anecdotal and misleading. A person’s doctor and other medical team members are often vital resources regarding medications for that person; still, the person should not give up decisions to these team members, but instead should join with them in coming up with the best plan. Table 9.1 summarizes the major classes of psychiatric medications, common subgroups, clinical benefits, and side effects. Most classes of medications have varied subgroups; how does a person and a medical team decide among subgroups after considering clinical benefits and side effects such as those listed in Table 9.1? This process may take time and may involve some trial and error. A subgroup that works effectively for one person may have a different impact on another. And even within a subgroup, specific medications vary in their impact on different people. The hope of so-­called “personalized” medicine is that in the future biological (e.g., genetic) tests will predict whether a specific medication is likely effective for a certain individual. But so far this goal has not been achieved; therefore some trial and error is unavoidable (van Westrhenen & Ingelman-­Sundberg, 2021). Medication effects may also vary as the amount of medication taken daily is changed. This process can be difficult, because weeks or months are often needed to determine the effects of a specific amount of a particular medication. While some medications, such as anxiolytics, start being effective within an hour or two, others (e.g., antidepressants) take weeks to show whether they work (Taylor et al., 2021). Person, doctor, and rehabilitation provider are trying to balance clinical benefits with side effects; again, however, the person should have the final authority on prescriptions.

Antipsychotic Medications Antipsychotic medications are often prescribed for disorders on the schizophrenia spectrum and for people showing psychotic symptoms as a result of major depression, bipolar disorders, or other illnesses. They seem to have the best effects on some of the positive symptoms of psychosis, such as delusions, hallucinations, and formal thought disorder; unfortunately, they are less effective for negative symptoms such as flat affect, limited speech, and lack of motivation (that said, amisulpride and cariprazine show some efficacy on negative symptoms) (Leucht et al., 2022). There are two major subgroups of

TABLE 9.1.  The Seven Major Classes of Medications, Grouped by Indications and Clinical Effects Indications and clinical effects Subgroups

Side effects

Antipsychotic medications Antipsychotic medications may be prescribed for disorders in the schizophrenia spectrum (e.g., schizophrenia, schizoaffective disorder) or psychoses related to affective disorders (e.g., bipolar or major depression). They may relieve some of the positive symptoms of psychosis, including hallucinations, delusions, and formal thought disorder. Some second-generation antipsychotics may relieve negative symptoms.

Conventional: chlorpromazine (Thorazine), chlorprothixene (Taractan), droperidol (Inapsine), fluphenazine (Permitil, Prolixin), haloperidol (Haldol), mesoridazine (Serentil), molindone (Moban), perphenazine (Trilafon), pimozide (Orap), prochlorperazine (Compazine), thioridazine (Mellaril), thiothixene (Navane), trifluoperazine (Stelazine)

Wakefulness: Sedation, fatigue. Cardiovascular: Low blood pressure. Hormonal (endocrine): Breast enlargement and increased milk production. Skin: Skin rashes, skin photosensitivity. Neurological (sometimes called extrapyramidal side effects or EPSs): Dystonia (severe muscle spasms); pseudoparkinsonism (tremor, muscle stiffness, rigidity, stooped posture, masklike face); akinesia (reduction in spontaneous movements); akathisia (internal restlessness); tardive dyskinesia (involuntary movements, often in mouth, tongue, or fingers).

Second-generation (“atypical”): aripiprazole (Abilify), clozapine (Clozaril), olanzapine (Zyprexa), risperidone (Risperdal), ziprasidone (Geodon)

Sedation, hypersalivation, constipation, dry mouth, obesity, metabolic changes (lipids and glucose), Type 2 diabetes mellitus, pseudoparkinsonism at higher doses, agranulocytosis (sudden drop in white blood cells).

Medication for antipsychotic side effects Medications for the side effects of antipsychotics may be prescribed for extrapyramidal side effects (EPSs), which often result from conventional antipsychotic medication use. In particular, they relieve the various movement disorders that are among the EPSs.

amantadine (Symmetrel), benztropine (Cogentin), diphenhydramine (Benadryl), propranolol (Inderal), trihexiphenidyl (Artane)

Dry mouth, blurred vision, memory problems, constipation, rapid heartbeat, loss of appetite.

Tricyclics and tetracyclics: amitriptyline (Elavil), clomipramine (Anafranil), desipramine (Norpramin, Pertofrane), doxepin (Adapin, Sinequan), imipramine (Tofranil, Janimine, Sk-Pramine), nortriptyline (Aventyl, Pamelor), protriptyline (Vivactil), trimipramine (Surmontil), amoxapine (Asendin), maprotiline (Ludiomil)

Cardiovascular: Orthostatic hypotension, palpitations, conduction slowing, hypertension.

Antidepressant medication Antidepressant medications may be prescribed for depression, and also for some anxiety and related disorders. They may relieve biological (e.g., insomnia and low energy), psychological (e.g., low mood and hopelessness), and behavioral (e.g., suicide) symptoms of depression.

Central nervous system: Tremor, sedation, stimulation, twitches, seizure, EPSs. Other: Perspiration, weight gain, sexual dysfunction, impotence, dry mouth, constipation, urinary hesitance, esophageal reflux.           (continued)

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TABLE 9.1.  (continued) Indications and clinical effects Subgroups

Side effects

Antidepressant medication (continued) Monoamine oxidase inhibitors: phenelzine (Nardil), selegiline (Eldepryl), tranylcypromine (Parnate), isocarboxazid (Marplan)

Low blood pressure, high blood pressure crises (interactions with foods or medications), sexual dysfunction, insomnia, sedation, stimulation, muscle cramps, urinary hesitancy, constipation, dry mouth, weight gain, twitches.

Selective serotonin reuptake inhibitors: fluoxetine (Prozac), fluvoxamine (Luvox), paroxetine (Paxil), sertraline (Zoloft)

Gastrointestinal: Nausea, indigestion, diarrhea, vomiting, cramping. Neurological: Insomnia, jitteriness, agitation, restlessness, headache, tremor. Other: Excessive perspiration, decreased libido, delayed orgasm.

Mood stabilizers Mood stabilizers may be prescribed for bipolar disorders or schizoaffective disorder. They may relieve expansive mood (e.g., euphoria) and behaviors (e.g., unusual trouble with overspending or sexual relations).

lithium carbonate (Eskalith, Lithane, Lithotabs, Eskalith CR, Lithobid), lithium citrate (Cibalith-S), carbamazepine (Tegretol), valproic acid (Depakene, Depakote), lamotrigine (Lamictal), gabapentin (Neurontin)

Neurological: Tremor, ataxia (balance problems), sedation. Gastrointestinal: Indigestion, weight gain, diarrhea. Skin: Rash, hair loss. Cardiac: Arrhythmia. Hematological: Low blood count.

Antianxiety medication (anxiolytics) Anxiolytics may be prescribed for anxiety and related disorders, as well as for major depression. They may relieve distress as well as related autonomic symptoms, such as shortness of breath, rapid heartbeat, and profuse sweating. They may also relieve insomnia.

Benzodiazepines: alprazolam (Xanax), chlordiazepoxide (Librium), clonazepam (Klonopin), clorazepate (Tranxene), diazepam (Valium), lorazepam (Ativan), oxazepam (Serax)

Sedation.

Nonbenzodiazepines: buspirone (BuSpar)

Nausea, headache, nervousness, and insomnia.

Benzodiazepines: estazolam (Prosom), flurazepam (Dalmane), quazepam (Doral), temazepam (Restoral), triazolam (Halcion)

Sedation.

Impaired cognitive function and judgment; amnesia. Respiratory suppression. May lead to withdrawal if terminated precipitously.

Sedatives/hypnotics Sedatives and hypnotics may relieve symptoms related to insomnia.

Impaired cognitive function and judgment; amnesia. Respiratory suppression. May lead to withdrawal if terminated precipitously.

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TABLE 9.1.  (continued) Indications and clinical effects Subgroups

Side effects

Sedatives/hypnotics (continued) Nonbenzodiazepines: eszopiclone (Lunesta), zalepon (Sonata), zolpidem (Ambien), zopiclone (Imovane), ramelteon (Rozerem)

Similar to benzodiazepines.

Stimulants: dextroamphetamine– amphetamine (Adderall), dextroamphetamine (Dexedrine), dexmethylphenidate (Focalin), methylphenidate (Concerta, Ritalin), lisdexamfetamine (Vyvanse)

Central nervous system: Insomnia, headaches, nervousness, and social withdrawal. Gastrointestinal: Stomachache and appetite loss. Cardiac: Elevated heart rate and blood pressure. May exacerbate psychotic symptoms.

Nonstimulants: atomextrine (Strattera), clonidine (Kapvay), guanfacine (Intuniv), armodafinil (Nuvigil), modafinil (Alertec, Provigil)

Nausea, decreased appetite; fatigue; abdominal pain; increased heart rate and blood pressure; insomnia; irritability; urinary retention.

Psychostimulants Psychostimulants may be prescribed for attention-deficit/ hyperactivity disorder (ADHD) or narcolepsy. For ADHD, they may relieve impulsivity, promote attentiveness, and be calming. For narcolepsy, they may reduce sleepiness.

Note. Common examples of generic and trade names (in parentheses) are subgrouped. Significant side effects are summarized. Based on Ferrando, Owen, and Levenson (2014).

antipsychotics: conventional and atypical. The latter are also called second-­generation, because they emerged from a line of research that gained prominence in the late 1980s, well after the introduction of the conventional antipsychotics. Conventional antipsychotic medications may negatively affect several organ systems in the body. They can make people feel tired and fatigued. They can lower blood pressure and lead to skin rashes. They also have a variety of neurological effects, including muscle spasms, tremors, and restlessness, which are often known together as extrapyramidal side effects (EPSs). Atypical antipsychotics can also lead to sedation, changes in appetite, constipation, and obesity (which can lead to Type 2 diabetes). Antipsychotic medications can be taken orally and daily as tablets or as depot injections with intervals of several weeks or sometimes months. Studies show some benefit of depot compared to oral antipsychotics in terms of relapse and hospitalization rates (Kishimoto, Hagi, Kurokawa, Kane, & Correll, 2021); however, this remains a personal choice.

Medication for the Side Effects of Antipsychotics There are medications often prescribed to diminish the EPSs caused by conventional antipsychotics. Benzatropine (Cogentin) and diphenhydramine (Benadryl) are common

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examples. These medications may have their own side effects, however, including dry mouth, blurred vision, and heart problems.

Antidepressant Medications There are three major subgroups of antidepressant medications. The oldest is monoamine oxide inhibitors (MAOIs); they have dangerous side effects, and hence are used sparingly, if at all, today. Tricyclic and tetracyclic medications have relatively similar chemistry and physiological effects, which differ from those of the third subgroup, selective serotonin reuptake inhibitors (SSRIs). Antidepressant medications are often indicated for people showing marked biological (e.g., sleep disturbance), psychological (e.g., sadness and hopelessness), and behavioral (e.g., thoughts of suicide) symptoms of depression. These may include people with major depression or anxiety disorders. As just stated, MAOIs have significant side effects, including blood pressure crises that are made worse by some foods and medications. Tricyclics and tetracyclics also affect blood pressure, though at less risky levels. They may have neurological side effects including tremor or sedation. Tricyclics and tetracyclics may also cause weight gain, esophageal reflux, and sexual dysfunctions. SSRIs have in some ways become more popular, because they seem to have fewer side effects than the other two subgroups. That said, they still may cause restlessness and can have negative effects on digestion, sleep, and sexual functioning.

Brain Stimulation Therapies Brain stimulation therapies (BSTs) include a variety of treatments that involve focal electrical or electromagnetic brain stimulation (Rosson et al., 2022). Two BSTs have particularly broad research support. Electroconvulsive therapy (ECT) is the strategic induction of seizures by electrical means. Pulses are delivered through electrodes on the scalp while the person is under general anesthesia to avoid bodily harm that might result from the seizures. ECT is often provided in a series of 8–12 treatments, two to three times per week; sometimes ECT is provided, about once a month, as maintenance treatment over longer periods of time. Side effects may include disorientation and impairments in verbal or autobiographical memory (Landry, Moreno, Patry, Potvin, & Lemasson, 2021). Studies show benefits of ECT for people with depression (Meechan, Laws, Young, McLoughlin, & Jauhar, 2022) and for those with schizophrenia (Ali, Mathur, Malhotra, & Braga, 2019), including positive effects on negative symptoms (Tseng et al., 2022). Transcranial magnetic stimulation (TMS) was developed to address a variety of neurological disorders. During the procedure, a magnetic generator coil is placed near the person’s head; this coil provides low electrical current to the region of the brain. TMS has been shown to improve symptoms in people with depression, anxiety, or OCD without inducing seizures (Hyde et al., 2022). People with these conditions should consult a skilled psychiatrist to determine which of the two approaches might be better for them.

Mood Stabilizers Lithium is the first line of medication prescribed for the manic symptoms of bipolar I disorder and related illnesses. It seems to diminish the expansive mood and troubling behaviors that characterize a manic state. Lithium has risky side effects that typically require

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regular blood tests to keep it at a certain safe blood level. Other mood stabilizers with less harmful side effects have since emerged, such as carbamazepine (Tegretol) and valproate (Depakote) and lamotrigine (Lamictal). Both lithium and the other mood stabilizers may have other negative effects, including digestive, skin, and neurological symptoms.

Antianxiety Medications The panic and distress of anxiety and related disorders can be disruptive for many people. Medications treating these symptoms and the corresponding physiological effects, such as shortness of breath or rapid heartbeat, are called anxiolytics. One group of these is benzodiazepines, which were once commonly used to help people manage their anxiety but are used much less often now because they can be addictive (leading to significant withdrawal when terminated). They can also suppress respiration. There are nonbenzodiazepines like buspirone (BuSpar) that seem to be less addictive, but these have risks of their own—­including, paradoxically, nervousness and insomnia.

Sedatives and Hypnotics Sometimes both benzodiazepines and nonbenzodiazepines are prescribed to help people fall asleep or stay asleep. However, these medications may worsen sleep when taken for a long time and hence are usually discontinued after a month or so. They also have the side effects described earlier for anxiolytics.

Psychostimulants Psychostimulants are medications that reduce fatigue, promote alertness, and enhance mood. They have been used narrowly to assist people with ADHD or narcolepsy. People taking psychostimulants for ADHD show less impulsivity and better attentiveness. Narcolepsy is a chronic sleep disorder marked by overwhelming daytime drowsiness and sudden sleep attacks; psychostimulants may decrease sleepiness in persons with this disorder. Psychostimulants should not be used for people with psychosis, because they can worsen symptoms such as hallucinations. Psychostimulants, in general, can also have heart, digestive, and neurological effects.

MAKING DECISIONS ABOUT MEDICATIONS Although psychotropic medications have many benefits, research shows that some people decide not to seek such medications or not to take them as prescribed. Large epidemiological studies such as the National Comorbidity Survey Replication (Kessler & Merikangas, 2004) and the World Mental Health Surveys (Demyttenaere et al., 2004) have shown that 30–40% of people who might benefit from psychotropic medications fail to seek them out. Providers have described psychological processes that might explain this. Some rather extreme older ideas included resistance (intrapsychic processes were hypothesized to block a person from fully engaging in treatment) and noncompliance (a behavioral judgment was passed on whether a person was failing to take medication) (Corrigan, 2011a). The concepts of adherence and nonadherence came later, as providers came to understand that people had to have active participation in treatment

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decisions (Velligan et al., 2010). The concept of collaboration more clearly acknowledged the respective expertise of care provider (in disease processes) and the person (in personal experiences). Collaboration was insightful for its time, elevating the “patient” to equal status with the provider. The idea of engagement subsequently emerged: Understanding processes that help the provider engage the consumer in a collaborative relationship is vital. Finally, self-­determination governs the rehabilitation provider’s current perspective on medication decisions. Self-­determination is choice! This, in part, can be stated as an ethical manifesto— that by the very essence of being human, people have the right to choose where they want to live, what they want to work, with whom they wish to affiliate, and what medications they wish to ingest (Varkey, 2021). But choice is not just an ethic; it is an observational and psychological reality. People choose all the time. They drop out of school if it does not meet their vocational or other developmental goals. They exercise daily if it is consistent with their vision of wellness. They take medication when they perceive it to have positive impact, and do not take it if they see it as having no effect or a negative impact. Self-­determination, however, is not meant as carte blanche for the pursuit of personal goals, regardless of their impact on others. Self-­determination needs to be understood vis-à-vis the same kinds of limits experienced by most adults. Generally, people are expected to make decisions that reflect not only their own interests but also those of other important people (e.g., friends, family members, coworkers, and others in their community). The idea of responsibility may be viewed as a restraint to self-­determination; for individuals with mental health problems, this may mean that these individuals have a responsibility to participate in treatment so as not to burden others. But taking responsibility for one’s own health and well-being is also advocated by the recovery movement; it is part of becoming empowered and self-­determined. Self-­determination suggests that people with mental illness are just like others—­capable of making valuable choices and therefore deserving of self-­determination. Self-­determination requires a thoughtful balance between exercising one’s personal agency and responsibly considering the concerns of others.

HOW MIGHT ENHANCING SELF-­DETERMINATION IMPROVE HEALTH-­RELATED DECISIONS? This section considers approaches aimed at the self, so that a person is better able to comprehend and make decisions about medications and other aspects of health care, and at the community, so that it can provide adequate resources and services for satisfactory decisions and not just be a barrier to self-­determination. Still, cautions need to be voiced here. In helping to facilitate treatment participation, providers may unintentionally reinvent the value of adherence; namely, the goal may become getting people with mental illnesses to accept the treatment that is recommended for them by “expert” providers. This should not occur. Self-­determination means that a person decides for themself the direction and nature of intervention, with service providers occupying consultation and supportive roles. The strategies discussed here are only meant to facilitate treatment-­related behavior once the decision to participate in treatment has been made. Incidentally, many of the strategies here are applicable to most rehabilitation decisions, not just medication (e.g., “Should I seek employment?”; “Do I want to change my address?”; “Should I give up smoking?”).

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PERSONAL EXAMPLE Carlos Ramirez Learns to Manage His Illness Carlos Ramirez is a single, 27-year-old Hispanic American male with a diagnosis of schizophrenia. He has had two psychotic episodes and hospitalizations, but none for the past year. The rehabilitation team has helped him to maintain his job, apartment, and relationship with his girlfriend. After trying several typical and atypical antipsychotic medications and experiencing a variety of distressing side effects, he and his medical team have found a medication combination with dosages that he is able to tolerate. Carlos and his girlfriend are both well informed about his illness and use a variety of coping strategies. She helps him attend to stress, sleep, diet, exercise, job performance, and medications. They both continue to ask questions as they acquire new information from friends and the media, but they know they can count on the team to help them find accurate answers.

Helping a Person Make Decisions Decisions related to adherence or other aspects of health care are more difficult when a person does not fully appreciate the ramifications of those decisions. SDM (see Chapter 7) is a fairly well-­developed and evaluated approach to health options meant to facilitate this process (Gurtner, Schols, Lohrmann, Halfens, & Hahn, 2021; NICE, 2021). It combines three basic principles and strategies. First, it helps the person examine costs and benefits of specific goals. For example, the person is encouraged to identify and make sense of the clinical benefits and side effects of a medication. Second, this kind of assessment is facilitated by information, so that the person better understands their life goals, disabling disorder, available treatments, and other relevant parameters. The education process requires development of meaningful and user-­friendly information channels. These may include face-to-face classroom kinds of endeavors or online didactic efforts. Peer-to-peer mentoring can also be helpful here. Third, health-­related decision making is fundamentally a series of social exchanges between person and provider. Skills that enhance the qualities of these exchanges positively affect treatment decisions. This last point has been incorporated into motivational interviewing. It suggests that SDM exchanges do not simply constitute an actuarial process weighing costs and benefits but must also include the factors that define good therapeutic relationships, such as empathy, genuineness, and promotion of self-­efficacy (Slade, 2009). Ample research has examined SDM in a variety of health care contexts, including treatment decisions related to substance abuse and mental illnesses. Findings showed that SDM leads to enhanced satisfaction with treatments and more consumer involvement in treatment decisions. However, findings on SDM effects on mental health, such as psychiatric symptoms, or functional outcomes were more mixed, with no clear benefits of SDM (Aoki et al., 2022; Thomas et al., 2021). Perhaps cognitive deficits are one reason why SDM seems to have limited effectiveness for people with serious mental illnesses. As a result of information-­processing dysfunctions, some people are unable to understand the balance between advantages and disadvantages of specific medications. Accordingly, cognitive therapies have been developed and tested to enhance treatment decisions and behaviors. Cognitive adaptation training is a good example with a growing body of supporting evidence (see Chapter

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13) (Stiekema et al., 2020). Cognitive adaptation training is the provision of compensatory strategies and environmental supports specifically built around individual EBPs. For example, a counselor might work with a person to clear out old medications from the bathroom cabinet; to place all currently prescribed medications in a daily pillbox; and to record a message linked to a computer alarm: “It’s time to take my medication.”

Removing Community Barriers to Self-­Determination The second set of approaches addresses community hurdles to self-­determination. Three are considered here: educating providers about self-­determination; advocating for legislation that promotes empowered decisions; and streamlining interventions so participation is not onerous.

Professional Education about Self-­Determination Although providers seem to be improving their awareness of ideas about recovery and self-­determination, there still seems to be a tenacious hold on old notions that people do not overcome their serious mental illnesses. Many medical and residency programs have incorporated recovery principles and people in recovery into their training, in order to stimulate interest in and educate newer generations of psychiatrists and other professionals about the treatment paradigm shift (Ahmed et al., 2021).

Laws and Policies That Promote Recovery Efforts have been made to codify principles of recovery and self-­ determination. In part, this has been debated in legislation related to diverse issues such as outpatient commitment and psychiatric advance directives (ADs). More immediate to the mental health system than activities of the legislature are policies of the executive. The New Freedom Commission on Mental Health rested its report to President George W. Bush on a recovery-­oriented system (Hogan, 2003). Most states have followed suit. Specific examples related to self-­ determination have included meaningful person and family involvement in government decisions, especially ones related to new spending; support of person-­developed and person-­operated services; person-­responsive crisis planning and advance directives; and statewide recovery education programs. Similar policies apply to medication decisions. ADs are legal documents written by people with mental illness when they are thinking clearly (Zelle, Kemp, & Bonnie, 2015). They are often used as adjuncts to the kinds of relapse prevention plan discussed in Chapter 7. They describe treatment preferences or name agents to make treatment decisions should the persons become unable to make such decisions due to psychiatric illness. Two kinds of ADs are available: (1) instructive ADs, in which instructions about mental health treatment and rehabilitation services are provided in case of psychiatric crisis; and (2) proxy ADs, in which an individual names a health care agent to make treatment decisions when the individual is unable to do so. Research on the effect of ADs is complex: ADs are highly valued by consumers (Braun, Gaillard, Vollmann, Gather, & Scholten, 2023). Although ADs were created to enhance a person’s sense of self-­determination, their better effects seem to be on the quality of the relationship between provider and person as they make decisions about medication use (Zelle et al., 2015).

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Convenience and Immediacy Service providers have sought to make evidence-based practices more convenient. The use of the word convenient might seem to minimize the importance of this effort, but humans, as a general rule, choose behaviors with the fewest demands. Accordingly, practical, grassroots approaches to services have emerged over the past decade or more. Some make obvious sense from contemporary perspectives, such as moving services out of the office and beyond the 9-to-5 workday to offer assistance when and where persons need them—the type of assistance at the heart of principles that define community support programs and ACT. Offering assistance when and where it is needed is an especially urgent and timely priority for services meant to address people with serious mental illnesses who are homeless or court-­involved (Diduck et al., 2022; Schreiter, Speerforck, Schomerus, & Gutwinski, 2021).

SUMMARY AND CONCLUSIONS Medications may have an important role in rehabilitation plans meant to help people achieve their life goals. Although most rehabilitation counselors cannot prescribe medications, they may still play an important role in the ongoing management of prescribed drugs. They can help to educate people as they consider prescriptions. Rehabilitation counselors may also facilitate the SDM process. The best approach to medication and rehabilitation occurs when a counselor reinforces notions of recovery and empowerment. Medication plans should be self-­determined.

C H A P T E R 10

Housing and Citizenship

H

ousing may be among the most important of personal goals. People are unlikely to get much satisfaction out of life unless they reside in a safe and warm place. This may be an especially dire issue for people with psychiatric disabilities who are experiencing homelessness. Housing for many may also be the fi rst step toward the pursuit of broader rehabilitation goals. A person will have difficulty pursuing employment and vocation without a home. Both physical health and mental health are sorely challenged by lack of stable housing. This chapter begins with a description of the types of settings in which housing for persons with psychiatric disabilities may occur. This is followed by a review of values guiding a person’s decisions about housing and a summary of factors that influence where people might live. Types of housing models, and research on housing interventions, are then discussed. Most research on barriers to housing reflects individual-level factors: symptoms and other personal determinants that undermine fi nding and keeping good housing. However, providers need to keep the bidirectional nature of rehabilitation in mind (individual and communal) as they help persons pursue housing goals; that is, providers also need to be mindful of structural and community barriers to achieving residential goals—issues such as racial and ethnic discrimination, experiences of mental illness stigma and areas that are unfriendly to neighbors with psychiatric illness, and overall lack of affordable housing (Mejia-Lancheros et al., 2021; Piat et al., 2015) Housing is entwined with ideas of citizenship. Living in hospitals or nursing homes cements people in the patient role, further alienating them from community. Housing and citizenship goals stress residence that promotes belonging (Sylvestre, 2017; Sylvestre et al., 2018). Instead of standing out as “that patient,” a citizen with a psychiatric disability becomes another neighbor. As such, they are able to enjoy the ordinariness of everyday life; everything is not framed in terms of disabilities and weaknesses. Citizenship includes the “five R’s” of rights, responsibilities, roles, resources, and relationships (Clayton, Miller, Gambino, Rowe, & Ponce, 2020). Rehabilitation plans should focus both on both instrumental aspects of citizenship (skills related to availing community resources) and its affective components (a sense of membership and relationship). 176

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WHERE MIGHT HOUSING OCCUR? A variety of settings, opportunities, and programs define the continuum of housing for people with psychiatric disabilities. This continuum ranges from the most challenging settings (e.g., living on the streets) to those most likely to reflect personal rehabilitation goals (an independently owned or leased setting with roommates of choice in setting of choice). A typology of these settings, together with citations of research reflecting their characteristics, is provided in Table 10.1. First, it is useful to gain an understanding of the size of the overall population experiencing homelessness. According to the U.S. Department of Housing and Urban Development (HUD), in January 2022, in a single night there were 582,462 people experiencing homelessness (de Sousa et al., 2022). At this point-in-time estimate, 40% of the population experiencing homelessness were unsheltered, 60% were sheltered. While, overall, this represents only a slight increase from 2020, the number of people with disabilities experiencing long-term homeless increased by 16%. Black and Indigenous individuals and people of color continued to be overrepresented. Homelessness is troubling for many people with psychiatric disabilities. Estimates for the prevalence of severe mental illness among those who are homeless vary widely, depending on sampling method, criteria for mental illness, and criteria for homelessness (Ayano, Tesfaw, & Shumet, 2019; Gutwinski, Schreiter, Deutscher, & Fazel, 2021). A 1996 national survey of homeless persons found that 56% met a broad definition of lifetime mental illness (i.e., meeting diagnostic criteria and having a history of psychiatric hospitalization) (Mojtabai, 2005). Recent meta-­analyses estimate that at among those experiencing homelessness in developed countries, the 12-month prevalence of any mental disorder is 76.2% (Gutwinski et al., 2021) and psychosis, 18.8% (Ayano et al., 2019). SAMHSA (2011) estimates that, overall, 30% of people who experience chronic homelessness have a severe mental illness. Absence of housing varies from being literally homeless (i.e., lacking a regular or nighttime domicile) to being functionally homeless (i.e., receiving temporary assistance from a shelter or other program). Institutions emerged as the first planned efforts to address the care and housing needs of people with mental illness. Originally, these were large, government-run settings where people might stay for months or years. Advocates realized that these settings were limiting at best, and often inhumane. As a result of public awareness of the inhumane conditions in institutions, optimism about new antipsychotic medications, court cases challenging commitment procedures, policies that incentivized states to move people out of state hospitals, and the development of community support programs, the overall census and length of stays in state hospitals dropped substantially (Grob, 1992). Other kinds of inpatient settings arose, including private psychiatric hospitals that exclusively catered to mental illness or psychiatric wards in general hospitals. Private hospitals and wards were also developed for substance abuse problems. Inpatient facilities are now also frequently found in correctional facilities; in fact, jails and prisons are currently among the greatest sources of institutional mental health care in the United States (see Chapter 14). Hospital inpatient units are meant to provide short-term care, so the person can be returned to the community. However, institutions also emerged in the community, such as nursing homes, intermediate care facilities, or licensed board and care facilities. These are often criticized for focusing exclusively on custodial needs (hygiene, diet, and physical health), while ignoring other essential elements of recovery (employment, relationships, education, and independent living). Adult foster care may also be viewed as a form of

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TABLE 10.1.  A Typology of Residential Arrangements Homelessness Homelessness includes several gradations (Drake, McHugo, & Biesanz, 1995; McHugo et al., 2005; McKinney–Vento Homeless Assistance Act of 1987): • Literally homeless. “An individual who lacks a fixed, regular, and adequate nighttime residence” (McKinney–Vento Act of 1987). • Marginally homeless. Individuals who are living in temporary settings such as emergency shelters, or who “double up” with members of other households because they have nowhere else to go. • Functionally homeless. Individuals living in temporary and institutional settings that are preceded by literal homelessness (McHugo et al., 2005). Institutions

• State psychiatric hospitals. State-operated facilities whose primary function is the treatment of mental disorders.

• Private psychiatric hospitals. Private hospitals whose primary function is the treatment of mental disorders. Inpatient units operated by community mental health centers are included here.

• General hospital psychiatric wards. Psychiatric wards located in general medical centers and providing short-term, acute crisis care.

• Substance abuse hospitalization. Hospital wards whose primary function is the treatment of substance use disorders.

• Nursing home or intermediate care facilities. Facilities responsible for medical and physical care of a person, and licensed as such by the state (Shadish & Bootzin, 1981).

• Correctional facilities. Jails, prisons, and other correctional facilities. • Licensed board-and-care facilities. “Non-medical community-based facilities that provide at least

two meals a day and/or routine protective oversight to one or more residents with limitations in two or more daily living activities. There is enormous variation among these facilities in size, resident mix, daily charges and services. Similarly, the amount, type and extent of board and care regulation varies greatly at the State level” (Office of the Assistant Secretary for Planning and Evaluation, 1993). California is one state with an extensive network of board-and-care facilities (Lindamer et al., 2003; Segal & Aviram, 1978). Licensed board-and-care facilities are distinguished from unlicensed boarding homes, described below. • Living with others who provide substantial care —Adult foster care. Housing provided by a family or funded by a government program (e.g., a state mental health authority or the Department of Veterans Affairs) in which a person is living in a single family dwelling with a nonrelative who provides “substantial care,” including a majority of the following functions: monitoring medication, transportation, cooking, cleaning, making restrictions on leaving the home, and/or money management. —Living with relatives (heavily dependent for personal care and control). A key criterion for classifying a person in this category is the assumption that if the family were not involved, the person would be living in a more restrictive setting. The same caretaking criteria used for adult foster care are considered in making this classification. Crisis housing as an alternative to hospitalization

• Structured, supervised group living arrangements provided as a short-term alternative to psychiatric hospitalization. Length of stay is typically limited to about 90 days (Stroul, 1988). • Housing alternatives to hospitalization, addressed on an individualized basis by using community lodging (e.g., hotels) (Bond et al., 1989). Semi-independent setting

• Group home. A residence supervised by staff members who assist residents in completing chores

essential to independent living (e.g., shopping, meal preparation, laundry). Typically, group homes have live-in staffs. Group homes may be time-limited or permanent residences (Golomb & Kocsis, 1988; Winerip, 1994).

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TABLE 10.1.  (continued)

• Fairweather Lodge. A self-governing communal living arrangement in which residents share household duties and often work together on mobile work crews (Krepp, 2000).

• Boarding home. A facility that provides meals and lodging; however, it is not seen as an extension

of a mental health or psychiatric rehabilitation agency, nor is it staffed with mental health personnel, and residents generally have autonomy to come and go. • Supervised housing program. Housing sponsored by a provider agency in which people are living mostly independently. Criteria for this category pertain to the degree of control that provider agency staff members have over key aspects of the living arrangements. Indicators include the following: (1) The provider agency signs the lease; (2) the provider agency has keys to the residence; (3) the provider agency provides on-site day or evening staff coverage; and/or (4) the provider agency mandates people to participate in mental health services, such as a medication clinic or day program, as a condition for tenancy. When assistance is limited to case management support and/or financial aid, it is not classified as supervised housing. Independent living

• Independent living. This category includes housing in the open rental market, as well as subsidized

housing. Independent living includes a wide range of housing arrangements, including single-room occupancy (SRO) hotels. Independent living includes shared housing for reasons not related to mental illness (e.g., personal choice related to culture and/or financial considerations). People living with others are considered to be living independently if they perform daily living functions without the supervision of a family member or case manager, even if they receive intensive case coordination or management. • Agency-sponsored scattered-site housing program. Residents live in apartments secured by a social service agency, which provides ongoing case management support (but the supervisory role is limited, as defined above). “Scattered-site” refers to the proximity of housing; if all residences are clustered within a single apartment complex, this is not scattered-site and may fit more closely within the category of supervised housing.

institutional services. In this case, housing is provided by a family but funded by the government; again, the services provided are largely custodial. Crisis care may assume a dynamic place between institutions and various versions of semi-­independent and independent housing. In some ways, short stays in inpatient units and crisis stabilization settings provide this function. The intention is for a person to stay no more than a week until they are stabilized and can be returned to the community. Community-based and peer support alternatives have also appeared. This includes the peer respite model that provides voluntary mental health support to people experiencing or at risk of crisis, in a short-term residential setting staffed by peer providers (Pelot & Ostrow, 2021). Another example that utilizes peer support is called the Living Room; this is a place for acute crises, with the ambience of a small and quiet residence (Shattell et al., 2014). Semi-­independent housing is meant to provide a “safe” place where people with psychiatric disabilities can try out new skills to manage disabilities before living independently. Group homes are common examples; these are facilities much like houses or small apartment buildings, run by 24-hour staff. The Fairweather Lodge Program provides a self-­governing version of group homes, where residents make most decisions by consensus (Krepp, 2000; Semmelhack, Ende, & Hazell, 2013). Independent housing represents most people’s goals. These are the same kinds of residential settings sought by every adult: leased or owned property where the residents have total control over the home. Agencies are now sponsoring scattered-site programs that help people attain these goals.

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WHAT IS VALUED IN HOUSING? Among the darkest aspects of mental health services in the past were housing programs that reflected the expedient interests of the system and not the persons in the system. These programs featured large institutions where people were housed on wards so staff members could conveniently provide custodial care. State-run “warehouses” of this sort were largely phased out as a result of the community mental health movement, although poorly formed ideas for asylums have recently reemerged (Sisti, Segal, & Emanuel, 2015). Unfortunately, the quality of housing for people with psychiatric disabilities remained poor in the community. Large-scale nursing homes dominated by custodial concerns rather than by the pursuit of personal goals emerged. These facilities were often relegated to “mental health ghettos”—low-­income areas with high crime rates (Carling, 1995). As recovery and empowerment became the guiding visions of rehabilitation, researchers worked to identify the values that might drive a person’s housing and citizenship goals. Table 10.2 reviews those that have emerged from comprehensive summaries of more than 40 studies; they are divided into values that represent housing versus those that reflect priorities of citizenship, although there is considerable overlap between the two sets (Nelson, 2010; Sylvestre, Nelson, Sabloff, & Peddle, 2007). Housing values are divided into three sets. First, people with psychiatric disabilities value choice. They prefer to live in independent settings, where they determine what it means to live there. This includes who a person’s roommates are—­significant others, family, or friends. People with disabilities also prefer a democratic management style in TABLE 10.2.  Housing and Citizenship Values Housing values Choice

• Independent and not institutionally run housing • Roommates who are selected by persons themselves (significant others, family members, friends) • Democratic management style: Residents influence decisions in housing upkeep Quality • Sound and attractive physical space • Safety • Privacy • Easy access to neighborhood resources Access and affordability • Programs that accept Section 8 certificates and other rent-geared-to-income plans • Settings that welcome people who were recently homeless • Housing that is fully accessible and accommodated to the needs of all disabilities Citizenship values Community integration • Places that are not marked for stigma (i.e., openly identified as housing for persons with psychiatric disabilities) • Residents who are identified as neighbors and not disabled people Accountability • Housing stakeholders (including management) who are fully accountable to each other Housing rights • Legally secured rent and tenure • Lease changes protected by statutes that govern all other residents in area Note. Based on Nelson (2010) and Sylvestre, Nelson, Sabloff, and Peddle (2007).

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PERSONAL EXAMPLE Where Should Agnes Stone Live? Agnes Stone was a 56-year-old woman who had been hospitalized several times for symptoms and disabilities related to schizophrenia. Housing had always been an issue for her; she had been evicted several times from facilities throughout the city, sometimes for nonpayment of rent. Soon after joining the Thresholds Bridge program in Chicago, Agnes moved from a nursing home to an efficiency apartment in a large, run-down building on the Near North Side. Over a 1-year period after joining the Bridge, she broke her pattern of rehospitalization (except for a brief stay at a private hospital). This is not to say that Agnes was symptom-free; quite the contrary. Even though she received twice-weekly Bridge visits and 15-minute sessions every other week with an empathetic counselor, Agnes functioned at marginal levels and displayed a wide range of bizarre behaviors. Bridge workers helped her keep her apartment in some semblance of order. They helped her with routine activities, such as budgeting money and keeping psychiatrist appointments. They made friendly suggestions regarding diet. Agnes’s dress was unusual. In the summer heat, Agnes sported duck-hunting boots, a miniskirt, and an old gray sweatshirt; her cheek was decorated with a half-inch mascara “beauty mark.” Her thought disorder intruded in other ways on everyday life as well. She conducted animated discussions with herself in public; she barricaded her closet door to prevent a snake from slithering into her apartment; and she insisted that her acquaintances call her Clark Gable, because she was actually a man. Fortunately, her building housed an assortment of “characters,” some as picturesque as Agnes. They included her landlady, whose tolerance of Agnes’s behavior was one key to Agnes’s residential stability (Based on Witheridge, Dincin, & Appleby, 1982).

housing; that is, they want to have the same kind of interactions with a landlord or lender as everyone else does. Second, people with psychiatric disabilities value quality in their housing. Like everyone else, they want to live in attractive and safe physical spaces. They want privacy; they also want proximity to neighborhood shops, recreational activities, faith-based communities, and other resources. Third, people want housing that is accessible and affordable. Many people in large cities have difficulty finding low-cost housing because of gentrification (e.g., upscaling apartments into condos for young executives moving in from the suburbs). People with psychiatric disabilities also usually want buildings that accept Section 8 certificates, which are given by HUD to offset the monthly rent of people with low incomes. Finally, people with psychiatric disabilities expect buildings that are fully welcoming to people who were recently homeless. They need to be fully accessible to people with psychiatric disabilities, even those who also have physical disabilities. People want citizenship along with housing. Three sets of values emerge here, too. First, people want their independent housing in a community to be fully integrated into the community; they do not want to live in buildings with prominent signs that lead to public stigma. They want to be identified as residents and neighbors, not as people living in “that halfway house.” Second, they want to live in fully accountable neighborhoods— areas where they are expected to be full citizens, and where they receive the same rights and benefits as their peers. Finally, people with psychiatric disabilities value housing rights. They want their rent and tenure legally guaranteed. Changes to a lease need to be governed by the same statutes that guide similar agreements in their neighborhood.

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FACTORS INFLUENCING WHERE PEOPLE LIVE Many people are not able to attain housing goals for a variety of factors. Some factors directly represent challenges created by serious mental illness and corresponding disabilities. Others represent the social determinants that hamper housing goals of people who experience socioeconomic disadvantage. Helping people overcome these challenges reflects the bidirectional nature of rehabilitation: helping people address both the personlevel factors of disability that undermine their goals and the community-level barriers to these goals. As is emphasized throughout this book, rehabilitation providers need to work with their broader team to address both types of barriers.

Poverty Many people with psychiatric disabilities live in poverty (Draine, 2013; Sylvestre et al., 2018). Their main sources of income may be monthly checks from Supplemental Security Income (SSI) and/or Social Security Disability Insurance (SSDI). The continuity of these payments can be disrupted for many reasons. Over two-­thirds of people with severe psychiatric disabilities are almost entirely dependent on Social Security programs for income support (U.S. General Accounting Office, 1996), making up almost one-third of SSI beneficiaries and nearly one-fifth of SSDI beneficiaries in 2021 (Social Security Administration, 2021). Thus, housing options are severely limited for the majority of people with serious mental illness, except for a fortunate small minority with access to housing subsidies, special programs, or other resources. A national study of housing affordability in 2016 concluded that people whose sole source of income was SSI would be required to pay, on average, 99% of their income to rent an efficiency apartment (Schaak, Sloane, Arienti, & Zovistoski, 2017). This level far exceeds HUD guidelines for allocating no more than 30% of income to housing expenses. It even exceeds the more liberal 50% guideline suggested by NAMI (Sperling, 2005). Disparities between SSI income and housing costs are exacerbated in large cities, forcing many persons with psychiatric disabilities in these cities to live in substandard housing (Levstek & Bond, 1993). Living close to or below the poverty line means that people are vulnerable to homelessness. Financial problems are especially evident in people addicted to substances, who may spend half or more of their disability income on drugs or alcohol (Shaner et al., 1995). Poverty and housing problems may be further exacerbated by ethnic disparities; for example, one study showed that people who were Black were more vulnerable to housing loss in independent housing programs (Schutt & Goldfinger, 2009).

Affordable Housing Starting in 1937, the federal government began to subsidize housing, both with funds to construct public residences and with income subsidies to allow people to rent in the open housing market (Youmans, 1992). Over 1.4 million housing units were constructed in cities, and 450,000 in rural areas (Youmans, 1992). The surge in homelessness in the 1980s has been attributed to many factors—­including policies initiated by the Reagan Administration to make cuts in federal housing subsidies for low-­income groups (Youmans, 1992), as well as the gentrification of inner cities mentioned earlier, in which inexpensive hotels and apartment buildings were torn down and replaced with upscale housing (Carling, 1990). As a result, affordable housing is often not available to meet the needs of people with psychiatric disabilities.

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Given this state of affairs, Carling (1994) describes three strategies to access housing through financing: offering access to existing housing, preserving existing housing, and developing new affordable housing. These approaches often involve the use of subsidies, which can be directed to individual people in the form of individual vouchers or to housing developments as a whole. Sources of subsidies include federal, state, local, and private entities (Dincin, 1988). Sometimes housing development has been specifically targeted for people with psychiatric disabilities; in other cases, it has been more broadly aimed at people with disabilities as a whole; and still other strategies have been aimed at the people who are homeless in general (Hopper & Barrow, 2003). Development of housing programs requires persistence in overcoming community resistance, as well as acquiring knowledge of endless regulations (Dincin, 1988; Winerip, 1994). One ongoing debate concerns where the locus of responsibility for developing and managing housing programs should reside: in public housing authorities or in the mental health system? Although housing development strategies for people with psychiatric disabilities may involve greater management than conventional housing, a study of one multi­ city project concluded that these kinds of projects resembled development of market-rate housing for any low-­income tenants (Harkness, Newman, Galster, & Reschovsky, 2004).

Community Acceptance In their study of board-and-care homes, Segal and Aviram (1978) examined external social integration. They defined this concept by indicators such as whether the residents of these homes had access to goods, services, and social contacts, and whether they used community resources apart from facility sponsorship. They found that conservative, ­middle-class neighborhoods were extremely negative in their reactions to individuals with mental illness living in their midst, whereas liberal, nontraditional communities were the most accepting. They also found that many people preferred to live in commercially zoned, relatively transient areas, because of the anonymity and de facto community tolerance of mental illness.

HOUSING MODELS Three housing paradigms have evolved to address the residential goals of people with psychiatric disabilities: custodial care, residential treatment, and supported housing (Nelson, 2010; Parkinson, Nelson, & Horgan, 1999). In practice, approaches to housing are typically more loosely implemented than theoretical descriptions would suggest, and hybrid approaches are fairly common (McHugo et al., 2005).

Custodial Care Custodial care refers to residences in which in-house staff members provide care services (meals, cleaning, and medication) (Kyle & Dunn, 2008; Parkinson et al., 1999). Custodial housing aims at maintenance, with very little intention to facilitate rehabilitation or help people reach their goals, especially those related to independence. Examples include nursing homes and licensed board-and-care homes. Many custodial care facilities operate as for-­profit businesses. The prevalence of custodial care may reflect the kind of caution common in some perspectives of psychiatry—namely, that people with serious mental illness often relapse. Custodial care mirrors the concerns of inpatient settings where

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safety comes first, so that relapse does not end up in catastrophe (Corrigan, Angell, et al., 2012). Custodial care is demoralizing and fosters dependency (Parkinson et al., 1999). Research shows that people living in custodial housing typically have poorer independent living skills, more psychiatric symptoms, and longer histories of psychiatric hospitalizations compared to people who are living more independently (Parkinson et al., 1999). Quality of life is often poor in such facilities (Nelson, 2010). Living environments in custodial care have the oppressive and stultifying characteristics of institutional living, which do not promote recovery. Although most rehabilitation providers would not endorse custodial care as a desirable housing option, historically, it has been the housing option for up to one-­fourth of people with serious mental illness (Goldman, 1984). Very little research has examined custodial care. In a Canadian review, Parkinson et al. (1999) concluded that the physical environment of custodial housing was often unpleasant (e.g., odor, poor lighting, worn-out furniture) and seemed to yield no positive outcomes. One 10-year follow-up of board-and-care residents suggested deterioration in health, symptoms, and independent social functioning, as well as decreased family contact (Segal & Kotler, 1993).

Residential Treatment Models One step beyond custodial care is the idea that housing serves as a treatment setting; that is, it can be used as a venue where people learn symptom management and interpersonal skills that will subsequently help them achieve independence goals when they are ready. Residential treatment has been described in terms of two models: a housing continuum or a housing array.

Housing Continuum Model The notion of a housing continuum has five elements (Ridgway & Zipple, 1990): 1. There is a progressive hierarchy of residential settings that vary in provision of service, staff supervision, and restrictiveness. 2. As people improve, they are expected to move sequentially through the continuum, eventually graduating to independent living. 3. Residents in each setting are similar in level of functioning. 4. Attendance in day treatment or other provider agency programs is often a requirement of residency in supervised group homes. 5. Participants who decompensate and return to the hospital often start over and recycle through the continuum. The continuum model originated in the early days of deinstitutionalization, when transition from hospital to community was viewed as best accomplished through gradual steps: Inpatients progressed from a residence on the grounds of the hospital (a quarterway house) to a structured, supervised home in the community (a halfway house), and eventually to independent living. Although the concept of the halfway house continues to be popular in the fields of corrections and substance abuse treatment, this terminology has fallen out of favor in mental health services. The term transitional group home is now more common and remains a central element in the continuum model. Although psychiatric hospitals

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originally operated transitional housing, most of these kinds of residential programs are now operated by community mental health centers or psychiatric rehabilitation agencies, although sometimes they are run by nonprofit organizations operating independently of the mental health system (Randolph, Ridgway, Sanford, Simoneau, & Carling, 1988). The continuum model has been always more of a conceptual model than a practical guide to operating a residential treatment program (Ridgway & Zipple, 1990). Few mental health systems have invested sufficient resources in housing to implement this paradigm fully or to serve more than a tiny segment of the total person population. Even at the paradigm’s apex of influence, fewer than 5% of people actually received services approximating the continuum model (Randolph et al., 1988). Group homes are also often incompatible with persons’ preferences; most people want to live independently (Carling, 1995; Corrigan & McCracken, 2005). Although individualization is a fundamental principle of evidence-based psychiatric rehabilitation (Rapp & Goscha, 2005), group settings have difficulty in providing individualized treatment and rehabilitation. Relatedly, the interpersonal and coping skills needed to adjust to group living are different from those necessary for independence (Farkas & Coe, 2019; Liberman, 2008). Still another concern about the continuum view involves the implicit requirement that people need to prepare for the next environment. Yet transitions are often stressful, artificially timed, and contrary to personal preferences. They also may result in lost relationships and community connections. Designing a housing program based on multiple transitions does not reflect the fact that people usually find it difficult to adjust to new environments (Stein & Test, 1980). Moreover, staff members in housing programs on a continuum can become preoccupied with facility issues (rules, staffing, keeping placements filled, etc.), to the detriment of developing the skills and supports people need to live independently. These kinds of housing programs also often fail to provide the last step in the continuum—stable, affordable housing. Consequently, people can become “stuck” in group housing. Finally, transitional housing programs may require fixed lengths of stay that are not suited to people’s needs. Because the trajectories of psychiatric illnesses are idiosyncratic and nonlinear, requirements for specific lengths of stay are often artificial.

Housing Array Model Like proponents of housing continua, proponents of the housing array model assume that various levels of support and assistance should be tailored to the different needs, competencies, and preferences of different individuals (Dincin, 1988; Fields, 1990). Housing arrays, however, are more flexible than housing continua. A housing array does not imply any set sequence, nor are residents required to make transitions through housing options in some prescribed way. Permanent residence in a group home is one option within this model. In addition, housing arrays assume that some people simply need a place to live without the requirements of a rehabilitation plan. Group homes in a housing array are often viewed as a best fit for people lacking basic independent living skills (e.g., shopping, cooking, and cleaning). Group homes may offer a built-in community, which can serve as an antidote to the sparse social networks of some people (Pescosolido, Wright, & Lutfey, 1999). Special-needs groups, such as people who are deaf and struggle with mental illness, may particularly benefit from congregate living given the isolating features of their compounded disabilities (Dincin, 1988). Supervised group homes also have been used for people with co-­occurring substance use disorders (Brunette, Mueser, & Drake, 2004a).

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By analogy to dormitory living in colleges, group homes for young adults with mental illness have been offered as a transitional step as these young adults leave their families of origin (Dincin, 1995a). Dincin (1995a) has suggested that “emancipation” or “constructive separation” from the family (while maintaining a strong alliance) is often the best course of action in the recovery process for young adults, especially those who are overly dependent on parents. Some of the criticisms of housing continua also apply to housing arrays, however. Development of group homes has often been a reflexive response to deinstitutionalization. For example, the general response by community providers in Indiana was to develop group homes when the state closed a state hospital in 1994 (McGrew, Wright, Pescosolido, & McDonel, 1999). Little planning was given to other aspects of the closing, such as provision of intensive care coordination. Many people prefer not to live in such facilities. The challenges involved in running group homes are formidable (Dincin, 1988; Winerip, 1994). Securing financing for housing programs may be difficult. Zoning laws and community resistance can be major challenges in deciding on locations. Continued financial viability requires that group homes remain filled, which implies a recruiting dynamic (“We must keep this building full”) that may be at cross-­purposes to individual needs. Group homes are frequently staffed by underpaid and untrained individuals who may not be well versed in rehabilitation principles. Staff positions in group homes are also notoriously high-­burnout, high-­turnover positions (Bond et al., 1989; Winerip, 1994), creating further challenges. Managing a group home involves setting policies regarding substance abuse, assaultive behavior, property damage, refusal to take medications as prescribed, suicidal behavior, and medical illnesses. Defining rules that foster autonomy, while protecting the rights of the group, is difficult.

Supported Housing Supported housing means helping people achieve independent living in housing arrangements of their choice while providing adequate care, management, and support. Permanent supported housing (PSH) is now the prevailing model in the United States (Farkas & Coe, 2019). Supported housing seems to have originated in the work of mental health advocates who championed normal housing in the community as an alternative to clinically managed treatment programs. These advocates saw supported housing as a “paradigm shift” from the linear continuum model (Hogan, 1999; Ridgway & Zipple, 1990). Advocates included individuals from the person-­centered movement who noted the dehumanizing and paternalistic attitudes common in residential treatment programs (Howie the Harp, 1990). The surge of homelessness in the 1980s gave further impetus to the supported housing movement. As described by Hopper and Barrow (2003), two distinct traditions within the supported housing movement are integrated housing (the perspective of mental health advocates) and housing as housing (the perspective of housing advocates). Advocates for those who are homeless have viewed housing issues through the broader perspective of the needs of all individuals living on the margins of society. They have generally seen their role as community building rather than as finding housing in normalized settings. The integrated housing development approach searches for affordable housing within existing stock, whereas the housing-as-­housing approach is more likely to develop new housing (through purchasing housing, rehabilitating existing buildings, or constructing new residences). Ridgway and Rapp (1997) sorted the critical ingredients of supported housing into two categories: housing assistance and intensive case management. These are

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summarized in Table 10.3. With its emphasis on normalization, individualization, and intensive support, the philosophy of supported housing is highly compatible with the assertive community treatment (ACT) model of care coordination discussed in Chapter 8. Thus, it is not surprising that ACT and supported housing are often offered together (Witheridge, 1990). The one key difference is that supported housing is intended for a broader spectrum of people with psychiatric disabilities than is ACT. One example of supported housing is the Pathways to Housing program in New York City for individuals with mental illness who are homeless (Tsemberis, 2013; Tsemberis, Gulcur, & Nakae, 2004). This program values housing as a basic human right. Pathways to Housing is an excellent example of the housing-first philosophy (Watson, Wagner, & Rivers, 2013). Unlike traditional programs, Pathways to Housing does not make housing assistance contingent on people’s agreeing to sobriety, treatment compliance, or other such conditions. It also does not discharge residents for difficulties related to their disabilities. People are provided with immediate assistance in locating and securing permanent housing in the open market. Most people hold the leases on their apartments, although Pathways may serve as representative payee on their money, ensuring that rent is paid. Most residents receive rent subsidies from government sources. Pathways has also adopted a harm reduction philosophy (described in Chapter 16); that is, drug abstinence is not a prerequisite for assistance. Residents are encouraged to pursue less harmful substance use behaviors, even if they refuse to abstain. The Pathways program provides care coordination services based on the ACT model, but allows residents to determine type and intensity of services, or even to refuse most services. Pathways to Housing is now incorporated into Canada’s national housing program (Polvere, MacNaughton, & Piat, 2013), as well as that of the U.S. Department of Veterans Affairs (Montgomery, Hill, Kane, & Culhane, 2013). Several criticisms of supported housing have been offered (Delespaul & deVries, 1987; Fakhoury, Murray, Shepherd, & Priebe, 2002; Krupa, McLean, Eastabrook, Bonham, & Baksh, 2003; Parkinson et al., 1999): 1.  Supported housing may not be applicable to those with the most severe psychiatric disabilities. Some people may benefit from a more structured approach during the initial stages of recovery. TABLE 10.3.  Critical Components of Supported Housing Housing assistance

• Rental subsidies are provided. • Consumers’ choices are honored (e.g., where they live and with whom). • Assistance is provided in obtaining and establishing a home. • Consumers control personal space and have typical tenant roles and responsibilities. Intensive case management

• Staff-to-client ratios are about 1:10. • Case management contact with clients is frequent (up to several times a week) and individualized to clients’ needs; clients have ready access to crisis services.

• Most services and support are provided directly by the case manager, not brokered. • Case management is mostly provided in home and community settings, and services tailored to each individual.

• Programs have explicit goals to increase residential stability, reduce homelessness and hospitalization, improve quality of life, and increase access to affordable housing.

Note. Based on Ridgway and Rapp (1997).

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2.  Supported housing may not help people with social isolation. Although proponents value community integration, many people stay confined to their apartments and have little contact with neighbors. 3.  Sometimes supported housing does not account for the economic realities of a community. Safe, affordable, attractive housing may not be available in the open rental market. It is, in fact, the absence of appropriate housing that has led some advocates to propose the development of agency-run housing programs (including scattered-site housing that can be operated as supported housing) (Dincin, 1988). In addition to a lack of affordable housing and housing discrimination, the lack of adequate funding to attract and retain qualified staff and the ability of providers to shift paradigms from more the traditional control and risk reduction approach to support client choice and recovery goals make successful implementation challenging (Farkas & Coe, 2019).

RESEARCH ON HOUSING INTERVENTIONS An extensive body of research has examined processes and outcomes related to housing interventions (Eichler, Gowdy, & Etzel-Wise, 2004; Rog, 2004). A comprehensive review yielded 50 studies of housing programs that examined the processes and outcomes of these programs (Tabol, Drebing, & Rosenheck, 2010); an earlier review discovered 87 separate articles (Fakhoury et al., 2002). Despite this substantially growing literature, investigators remain concerned about the quality of the research. RCTs are rarely used, and outcomes are often assessed cross-­sectionally rather than over time. Although important measures of outcome are often incorporated (e.g., tenure of community living), future research needs to examine factors relevant to recovery: hope, satisfaction, and quality of life. Adherence to models is often poor, with studies of housing continua and arrays virtually absent from the literature. Tabol et al. (2010) neatly summarized the research in terms of supportive versus supported housing: They described supportive housing as based on “rehabilitation values and a resident identity, rather than empowerment, community integration, and a tenant/ citizen identity” (p. 447). Supported housing is a more choice-based approach, leading to independent and permanent variants of housing.

Supportive Housing Transitional housing and halfway houses are commonly studied examples of supportive housing. Based on 26 evaluations, one review concluded that it was effective in reducing hospitalizations, and that approximately 80% of halfway house residents adjusted to community living (Rog & Raush, 1975). A subsequent review encompassing 109 studies of halfway houses was far less enthusiastic, noting that major methodological deficiencies in this literature precluded any rigorous conclusions (Cometa, Morrison, & Ziskoven, 1979). Another review examined the impact of group housing without distinguishing between transitional and permanent living arrangements. Drawing on studies conducted in Canada, the United Kingdom, and the United States, Nelson and colleagues (Nelson, Hall, & Walsh-­Bowers, 1998; Parkinson et al., 1999), reached optimistic conclusions

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regarding the effects of group housing, which included “increased participation, self-­ respect, independent functioning, social support, and involvement in leisure activities” (Parkinson et al., 1999, p. 156). Supervised group living programs vary widely in their program philosophies. One area with sharp differences in program philosophy is the treatment of co-­occurring mental illnesses and substance use disorders. A review of 10 controlled studies revealed that programs integrating treatment for mental illness and substance abuse, and having had less rigid admission criteria or rules requiring abstinence, had better outcomes (Brunette et al., 2004a). People who remained in these residential programs longer had better outcomes as well. The authors thus tentatively concluded that long-term programs might be more effective than short-term ones. Some research has examined factors influencing outcomes within group homes. The number of residents in a facility was correlated with poorer outcomes in an early study (Linn, 1981); further studies supported this conclusion (Newman, 2001). Staff attitudes reflecting hostility and criticism have also been found to have adverse effects on person outcomes (Fakhoury et al., 2002).

Supported Housing Several large demonstration projects have examined the impact of supported housing. The first was the Robert Wood Johnson Nine-­Cities Project, meant to improve organization of mental health services in nine cities through better coordination of services among different federal, state, and local agencies (Newman & Ridgely, 1994). The second multisite project was known as the Second Round McKinney Program (SAMHSA, 1995; Shern et al., 1997). The project evaluated outcomes for 896 previously homeless adults with mental illness at five demonstration sites receiving housing and rehabilitation services. At follow-up (1–2 years after admission), 78% of people in the active treatment conditions were stably housed. The third project involved outreach to people who were homeless and living with mental illness—a study known as the Access to Community Care and Effective Services and Supports (ACCESS) program (Rosenheck et al., 2002); a total of 5,325 people were enrolled in the project. At a 1-year follow-up, 37% were independently housed, whereas 11% were homeless, 10% were living in institutions, and the remaining 42% were unstably housed (Mares & Rosenheck, 2004). These projects documented the feasibility of supported housing approaches for people with psychiatric disabilities. Their longitudinal results demonstrated that housing outcomes were much better at follow-up than at baseline. However, findings varied dramatically both among the three projects and from site to site within each project, making generalizations difficult. Moreover, with only a couple of exceptions, none of the studies provided rigorous comparisons to specific alternative housing models (e.g., exemplars from the housing continuum and housing array models). Many sites also excluded “highrisk” people, thereby limiting the generalizability of the findings. Rog and colleagues (2014) reviewed eight literature reviews, seven RCTs, and four quasi-­experimental studies of permanent supported housing published between 1995 and 2012. Although housing models differed across studies, all shared several characteristics: community-based services, housing assistance provided independently of mental health services, and choice in services. The authors concluded that compared to usual services, supported housing had strong positive effects on housing stability, reduced homelessness and hospitalization, and increased consumer satisfaction. Most studies reviewed did not find effects for psychological symptoms or substance use. Overall, the authors concluded

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the evidence for PSH to be moderate; however, they noted that research rarely compared supported housing to other alternatives. The largest study to date of permanent supported housing for people with serious mental illnesses is the At Home-Chez Soi Pan-­Canadian Demonstration Project, which was an RCT of the housing first model (Aubry, Nelson, & Tsemberis, 2015). The study, conducted in five Canadian cities between 2009 and 2013, randomized 2,198 participants to treatment as usual (TAU) or housing first with ACT or intensive case management (ICM) services depending on level of need. Consistent with prior research, housing first proved more effective than TAU in helping people exit homelessness and achieve stable housing. Housing first participants also showed greater improvements in community functioning and quality of life at 12 months, although some improvements attenuated by 24 months. Latimer and colleagues (2019) conducted an economic analysis of the study data and concluded that there was an 80% chance that the housing first with ICM intervention was cost-­effective compared to TAU.

Housing Assistance versus Care Coordination Limited research has examined an important practice issue: What is the impact of housing assistance compared to care coordination and support? In one study, homeless people with mental illness were randomly assigned to four conditions (Hurlburt, Hough, & Wood, 1996). Half had ready access to Section 8 rent subsidy certificates, while the others did not. Within each of these two experimental groups, half were randomly assigned to receive comprehensive care coordination, while half received more brokered management. The study found a strong advantage for the people who had access to Section 8 housing certificates in achieving independent housing, whereas intensity of care coordination did not show any experimental differences. Substance abuse also had a significant influence on outcome. A quasi-­experimental study addressing the issue of guaranteed access to housing compared two programs for persons who were homeless. One was a comprehensive approach offering guaranteed access to housing, as well as housing support services and case coordination; the other also provided intensive care coordination but no guaranteed housing (Clark & Rich, 2003). The comprehensive approach found housing for people either in individual apartments owned and managed by the provider agency or in the open market. The authors found no differences between programs for people with low- or moderate-­intensity psychiatric symptoms and few substance abuse problems. The comprehensive housing approach had better housing outcomes for people with severe symptoms and frequent substance use.

SUMMARY AND CONCLUSIONS Housing and citizenship are among the primary goals for recovery and quality of life. Places where housing occurs have evolved from institutions (whether these were hospitals far removed from people’s home areas or nursing homes closer to people’s roots) to the community, to communities with full inclusion. The identities of people in housing have evolved as well—from patients in hospitals to residents, to community members and citizens (although great strides are still needed to yield full citizenship). Disabilities can undermine housing goals, but poverty and ethnic disparity can be equally troubling. The first approaches at housing assumed that the notion of an asylum, where people might escape the overwhelming

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stresses of community living, was benevolent. Asylums, however, became custodial settings where “safe existence” outranked self-­determination of goals. Supported housing, in which people are provided financial assistance and support to find and obtain housing that meets their goals, is now the “gold standard.” Housing first programs are an example of this approach. Some people’s disabilities and other challenges (e.g., substance abuse) may get them excluded or evicted from supported housing programs. Housing first means that management puts up very few barriers (e.g., felonious behavior) forbidding people to live in their programs.

C H A P T E R 11

Employment and Education

W

ork, like housing, is often among the most central goals for people with psychiatric disabilities. Education may be an important tool to help achieve vocational goals; alternatively, education in itself may be important to some people with psychiatric disabilities. This chapter begins with a review of the importance of employment and work in a person’s life. A typology of vocational rehabilitation approaches is then provided. Rehabilitation experts generally agree that supported employment is the most effective way to promote individual employment goals; hence, it is described most extensively in this chapter. The chapter then moves on to a discussion of possible goals people may wish to pursue in terms of education. Last, supported education programs to address these goals are reviewed.

THE IMPORTANCE OF WORK Research shows that the vast majority of persons with mental illness want to work (Ali, Schur, & Blanck, 2011; Bond & Drake, 2014; Brantschen, Kawohl, Rössler, Bärtsch, & Nordt, 2014). As it does for most people, work serves many goals for those with psychiatric disabilities (Eklund, Hansson, & Ahlqvist, 2004; Dunn, Wewiorski, & Rogers, 2008; Saunders & Nedelec, 2014). It provides structure to the day, a place to be, and tasks to do, which can often help people manage psychiatric symptoms. Work may also augment a person’s social support system; coworkers may evolve into friends or intimate partners. Certainly, work is the foundation for a living wage and health benefits. And it is often an important part of one’s identity: Social exchanges often begin with “What do you do for a living?” Moreover, employment programs need to focus on careers and not just work. Many people have specific interests in terms of engaging and interesting tasks. One person likes to work with their hands and might do well as an electrician. Another prefers the order of a 9-to-5 job and might appreciate a desk job. Vocational service providers do not try to place people in just any jobs, but ones that meet their career and vocational sensitivities. 192

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BARRIERS TO WORK GOALS Although work and career are often at the top of lists of goals, research suggests that only 38.1% of people with serious mental illness are employed full-time, 35.1% are not a part of the labor market, and 38.5% have incomes of less than $10,000 (compared with 23.1% of people with no mental illness) (Luciano & Meara, 2014). The disabilities of serious mental illness can pose significant challenges to finding and keeping work. Cognitive dysfunctions that arise from psychoses, or from significant anxiety and depression, can undermine job performance. Moreover, distress can impede a person’s job performance and may interfere with interpersonal interactions at work. People with serious mental illnesses may also have difficulty in school, failing to achieve a high school or college diploma or marketable career skills. This is where supported education may play a role. Finally, a lack of job availability and accessibility may also impede work goals. Communities with low employment rates are difficult settings for people with disabilities to find work. Unemployment rates are often associated with low income and ethnic disparity.

TYPES OF VOCATIONAL REHABILITATION Rehabilitation providers have implemented vocational services for people with psychiatric disabilities since the inception of the rehabilitation field. Table 11.1 lists four common models, ordered from those that are most restrictive and removed from a person’s community to those that fully embrace work in the person’s real world. This continuum parallels the “place first and then train” discussion in Chapter 3. More restrictive programs take the “train–place” approach and are focused on making sure treatment does not result in the person becoming more disabled. People are trained to handle their disabilities in relatively safe settings before being placed in real-world work sites with greater

PERSONAL EXAMPLE Martha Simpson Got Unneeded Training Martha Simpson was a 54-year-old divorced woman with a long and turbulent history of bipolar disorder. She had worked intermittently as a law clerk between episodes of illness over many years, and she desired to return to this work after leaving the hospital. Her mental health team referred her to a local psychosocial rehabilitation program. After a 6-week assessment process that included interviews, paper-and-­pencil tests of interests and personality, and lengthy evaluations of her work skills in different areas, she was placed in the kitchen unit of the rehabilitation center. Though kitchen work was not her goal, Martha was told that this experience would help to ensure that her work habits, grooming, and social skills were ready for returning to competitive employment. She went along with cooking for the day program, which seemed to her like “playing house” for a month. The final straw was struggling to learn to use a modern potato peeler. After several demonstrations by a young rehabilitation worker, Martha picked up a knife and showed the worker how she had been peeling potatoes for decades. After this incident, Martha left the day program and found a law clerk job on her own. She struggled to keep this job because she had no follow-along supports.

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TABLE 11.1.  Types of Programs Meant to Facilitate Rehabilitation Goals Sheltered workshops These are safe settings where people with disabilities work solely with other people with disabilities, while supervised by rehabilitation counselors. Typically, work is obtained from local industries; participants are paid by piece completed (e.g., a person is paid 10 cents for every package of wood screws sorted into a plastic bag). Sheltered workshops provide places where people can try out adjustment skills before moving on to real-world competitive settings. Transitional employment These are settings involving real-world jobs that rehabilitation programs contract to complete for companies. The jobs are managed by program staff. A person with a psychiatric disability is hired for a particular position (e.g., cleaning crew member) for a limited period of time (e.g., 3–6 months). Participants use this time to develop a variety of skills that help them adjust to work. Participants may move through different jobs on the contract. Job clubs Rather than embedded in work settings, some vocational goals are addressed by participating in job clubs. These are places where participants can learn job-seeking skills (how to write a resume or do a job interview) and work adjustment skills. Club members provide support to others as peers pursue work. The club may also provide important resources for job searches, such as computer and telephone access. Supported employment These are settings consistent with a “place–train” philosophy: Providers of supported employment believe that people who pursue real-world jobs that meet their interests, and who receive sufficient support, will be successful in their vocational goals.

demands. “Place–train” programs are at the opposite end of the restrictiveness continuum: Participants are placed in work settings of their interest as soon as possible, and are then trained to address challenges as they arise. Sheltered workshops were established for people with different disabilities—­ developmental disorders, ambulatory difficulties, visual or hearing disabilities, and serious psychiatric illness—as safe places where people could be gently reintroduced to the demands of employment. Economically, such workshops have been supported through contracts with businesses for specific activities related to products. These typically include packaging (e.g., a worker puts five wood screws in a bag with a label) or simple assembly tasks (e.g., a worker puts together the pieces of a kitchen faucet). Participants are then paid by the piece (e.g., 10 cents for each bag). In the process, participants have the opportunity to adjust to work and its stresses, and may learn skills to handle job-­ related challenges specific to them. In some ways, however, sheltered workshops have become the unsavory hidden institutions of the vocational world. They may be in large factories where people sit on assembly lines for years putting screws into bags. Sheltered workshops are among the worst examples of “train–place” models. They are rarely seen in contemporary services for people with most disabilities. Transitional employment is a step toward competitive employment, in that people with psychiatric disabilities work in real jobs (albeit typically low-skill ones; e.g., cleaning services) with competitive wages. Rehabilitation programs contract with businesses to complete a service (e.g., cleaning an office building 3 nights a week) and assume all responsibility for getting the work done according to the contract. This may mean that agency staff members are actually doing the cleaning work in situations where program participants with psychiatric disabilities are not able to fulfill their responsibilities. Like

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sheltered workshops, transitional employment is meant to provide relatively safe training, where people work alongside peers with managers who are rehabilitation counselors. This gives the people a chance to learn work adjustment skills on actual work sites. Typically, participants assume a transitional job for 3–9 months to fully experience aspects of the position. Although more closely linked to the community, transitional employment has the same kind of “train–place” problems as sheltered workshops, unnecessarily postponing the pursuit of vocational goals in the real world. Rather than being situated in work settings, job clubs have more of an educational feeling: They are places where people with psychiatric disabilities learn about and seek jobs, with the support of peers and rehabilitation providers. Job clubs provide a curriculum in which people learn how to prepare for a job search, write up résumés, master interviewing skills, and negotiate job offers. These skills are often learned in role plays, where people can practice the skills. Job clubs also have resources such as computer services and phones to help implement the job search. Peer support is essential to a job club, because job hunting can be stressful. Although job clubs do not stress the risk of work for people with psychiatric disabilities, they still resemble “train–place” programs in requiring people to demonstrate certain skills and benchmarks before actually going out to get jobs. Supported employment is the fourth model in Table 11.1 and the approach that currently dominates strategies for helping people attain work goals. Because of its importance, it is discussed separately and in detail below.

SUPPORTED EMPLOYMENT The goal of supported employment is to help people find jobs they are interested in as quickly as possible, and to provide the training and supports that they need to succeed in these jobs. Stepwise approaches, such as extensive preemployment assessment, training, and practice, are eschewed in favor of real-world experience. Although several approaches to supported employment for psychiatric rehabilitation emerged in the late 1980s, standardization has evolved as research has clarified its evidence-based principles (Becker et al., 2007; Drake & Bond, 2014). These principles focus on empowering people to make decisions, to search for jobs of their choice directly (without delays for prolonged assessment and training), to count on service providers to support them by integrating mental health and vocational services, and to obtain services for as long as needed (see Table 11.2). These principles are incorporated into most current models of supported employment, and several studies show that fidelity to these principles at the program level is associated with better competitive employment outcomes (Luciano et al., 2014; Marshall et al., 2014). The basic model of supported employment has several elements (Becker & Drake, 2003; Becker & Bond, 2002). Helping people achieve employment goals needs to be a fundamental feature of mental health, as well as vocational rehabilitation services. To accomplish this effectively, mental health and vocational rehabilitation systems need to be integrated and collaborative. Vocational specialists join mental health teams to draw on the expertise and resources of both agencies. Employment then becomes part of the initial assessment, the treatment plan, the service delivery package, and the outcomes review process for everyone with a vocational goal. Typically, vocational specialists work with about 18–20 people at one time; thus, the number of specialists on a team is determined by the number of people with employment goals. Teams may also include care coordinators, substance abuse specialists, nurses, and psychiatrists. Ideally, counselors

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TABLE 11.2.  Principles of Evidence-Based Supported Employment 1.  Zero exclusion. Rather than professionals making decisions about readiness, participants themselves should make this decision. The policy of zero exclusion reflects federal guidelines, ethical principles of autonomy, philosophical commitment to person-­centeredness, and empirical findings. 2.  Integration of vocational and mental health services. Complete collaboration between vocational rehabilitation and mental health at all levels would be ideal. At the state level, the departments of vocational rehabilitation and mental health should cooperate on all policies, funding decisions, and organizational issues. At the local level, mental health and vocational staff should work together on multidisciplinary teams. The services should appear seamless to participants. 3.  Benefits counseling. In order to make good decisions about vocational goals and pursuits, people need to have accurate understanding of their benefits, including Social Security payments, health insurance, housing assistance, and food assistance. Benefits counseling services are often provided through the state department of vocational rehabilitation. 4.  Personal preferences. Vocational goals, supports, and timing should be highly individualized according to participants’ preferences, not professionals’ judgments. Each person is likely to have preferences regarding type of work, work setting, hours, coworkers, disclosure of mental illness, and other job factors. This principle eliminates group placements, generic placements, and professional choices in favor of jobs that reflect the specific preferences of each individual. 5.  Rapid job search. Assessment is minimized in favor of rapidly helping people pursue jobs of their choosing. For people who seemingly have no preferences, perhaps due to lack of prior work experience, the job search itself becomes a way to learn about different jobs. 6.  Follow-along supports. Services to help ensure vocational success are individually tailored, again according to personal preferences, and provided as needed without time limits. Follow-along services include on-site and/or off-site supports to both workers and employers. These services are available as long as a person requests them, including help in ending a job or finding a new job. 7.  Systematic job development. Employment specialists work with employers to determine their needs and hiring preferences in order to best promote candidates with psychiatric disabilities to employers and match the needs and preferences of the job seeker. 8.  Competitive employment. The goal of supported employment is for participants to obtain jobs that anyone in the labor market can apply for, that pay at least minimum wage/equal wages to workers with similar job duties, and have no time limits imposed upon them by the social service agency (such as with transitional employment).



from the state vocational rehabilitation agency meet with the team regularly to provide benefits counseling, as well as links with funding and services. Integrated vocational care means that a person’s overall goals, strengths, difficulties, and situation are considered throughout the process. For example, in setting vocational goals, the team and the person may consider details such as past work experiences, preferences for job type and hours, amount of stimulation and support in the work environment, benefits and insurance, and supports off the job site. This involves the entire team. The psychiatrist may have to adjust medications; the benefits counselor may need to review insurance and Social Security payments; the care coordinator may need to reassure the person’s family about work; and the vocational specialist may need to help the person identify potential job sites, develop a strong and appropriate résumé, submit applications, and prepare for an interview. The key word here is help; at no point should team members throw up barriers to an individual’s goal because they believe that the person is unable to achieve that goal. When to seek employment, what kind of job to seek, whether and how much information to disclose to employers, how to arrange interviews, and so forth, should be consistent with and driven by the person’s priorities. The same is true for mental health services.

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An important part of job choice is career or vocation. The goal is not just to get a person into any job, anywhere. Work is more satisfying when it mirrors the individual’s sense of what makes for a stimulating job. The stereotype is that people with mental illness are only able to fill janitorial or food service jobs. Although these are important and meaningful jobs for many, a person should not be automatically directed toward such jobs. The vocational team helps people survey the range of interests and possibilities to find a job. This may lead to identifying needs for additional education or certification in pursuit of a specific career path. Assessments (covered in Chapter 5) can be administered to help the individual to identify career goals most aligned with their interests and unique abilities. Job development specialists are individuals who work with community employers to develop relationships that might help individuals with psychiatric disabilities secure a job that interests them and fits their skills set. Once a person has chosen a career direction, the plan changes to emphasize supports that enhance the likelihood of success. Support may mean, for example, that the vocational specialist visits the job site weekly to check in with the worker and the employer; that the psychiatrist monitors and changes medications to accord with the person’s new sleep cycle; and that the person attends a substance use support group in the evening. Job coaches may spend time on the job, helping the individual to adjust to their job responsibilities, slowly removing their support as the person becomes confident in fulfilling their job duties independently. Supports are diverse and change over time. Again, the person directs this process through discussion, information, and choices. Support may include help with ending one job and moving on to another. The team may need to help the person to understand decisions related to ending jobs, practicing an interview with the employer, and searching for a new job. Learning to become a steady worker and developing a sense of career is a longitudinal process and, for most of us, involves trying a number of jobs.

Research Evidence on Supported Employment Research on employment services is substantial; most of the important work has been done on supported employment, particularly the type of supported employment called individual placement and support (IPS). IPS supports people in their efforts to achieve steady employment in mainstream competitive jobs, either part-time or full-time. This stands in contrast to other vocational rehabilitation approaches that employ people in sheltered workshops and other set-aside jobs. To date, 10 meta-­analyses of the literature have been conducted to estimate the overall effects of supported employment across studies, with the most recent including 30 individual studies, and 25 unique RCTs (Frederick & VanderWeele, 2019).

Effectiveness Research clearly demonstrates the benefits of supported employment in general, and IPS in particular, for individuals with psychiatric disabilities. Although there are many outcomes that might be assessed to examine impact, the frequency with which persons participating in supported employment get jobs is perhaps most compelling. Frederick and VanderWeele (2019) report competitive employment outcomes in two ways: (1) whether, at any point during a study, a participant obtained employment, and (2) whether employment was maintained at follow-up. They found that relative to a comparison condition, individuals receiving supported employment were 1.6 times more likely to obtain

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competitive employment at some point during the study period, and 1.8 times more likely to be employed at the end of the study period. In addition to being much more successful in helping people to obtain competitive jobs, supported employment helps those who do obtain work to do so more quickly. Across seven studies included in the Frederick and VanderWeele (2019) meta-­analysis, participants of IPS supported employment had a shorter duration to their first competitive employment job relative to comparison group participants who received TAU. (One common misconception is that supported employment is a rapid job placement model. In fact, supported employment is better described as a rapid job search model. Although the search for work begins soon after program entry, not everyone obtains work immediately.) Job satisfaction generally has not differed between those enrolled in supported employment and those enrolled in alternative programs, though one study did find differences in initial job satisfaction favoring supported employment (Bond, 2004). Other employment-­related outcomes of interest include job tenure, hours worked, and earnings. People participating in supported employment have shown longer job tenure, greater numbers of hours worked, and higher wages relative to those not participating in supported employment across numerous studies (Frederick & VanderWeele, 2019). Recently, some researchers have studied augmented models of supported employment that deviate slightly from these principles in an attempt to address issues of implementation (e.g., challenges with funding time-­unlimited services) (Mueser, Drake, & Bond, 2016). For example, one model of supported employment, IPS, has been augmented to provide supported employment services until either 9 months of unemployment has been reached following initiation of supported employment services, or an individual has been employed for 4 consecutive months. Preliminary research comparing this modified version of IPS (called IPS-LITE) suggests no differences in employment or other outcomes relative to the IPS model (Burns et al., 2015). Additional research with stronger research designs is needed to determine whether such modifications consistently produce comparable outcomes to the IPS model.

Supported Employment and Specific Populations Studies show that people of color and Latinx individuals face disparities in mental health care in the United States (Mongelli, Georgakopoulos, & Pato, 2020), and attribute such disparities to factors such as patient distrust of mental health providers, poverty, treatment expenses, and availability of services in communities where people of color and Latinx individuals reside. Unfortunately, little research has examined racial and ethnic disparities in IPS supported employment and few states systematically report statistics on racial and ethnic demographics of people participating in IPS supported employment programs (Bond, Drake, Becker, & Pogue, 2022). Bond, Mascayano, Metcalfe, Riley, and Drake (2023) conducted a narrative review of the literature examining racial and ethnic differences in access, retention, and effectiveness of IPS supported employment in the United States. Four studies have examined issues of access by race and ethnicity, with two studies finding no differences in access, one showing less access for Black Americans, and one showing greater access for Black Americans but less for Latinx individuals. Three out of three studies examining retention found greater retention rates for individuals enrolled in IPS compared with usual vocational services, regardless of race and ethnicity. Six studies examining employment outcomes showed better outcomes for individuals participating in IPS, regardless of race or ethnicity. The ASPIRE (Advancing State Policy Integration for Recovery and Employment)

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initiative was established in 2021 by the U.S. Department of Labor’s Office of Disability Employment Policy. Seven states (Florida, New York, Iowa, Montana, Louisiana, Virginia, and Indiana) were selected to be a part of the ASPIRE initiative in December 2022. These states are receiving support (i.e., consultation, technical assistance, and resources) from ASPIRE to align with state policy and funding infrastructures to promote competitive and integrated employment for people with disabilities. In response to the paucity of data and research on racial and ethnic disparities in IPS supported employment, Bond and colleagues (2022) published an issue brief for ASPIRE recommending systematic data collection of racial and ethnic demographic data in ASPIRE states in order to improve research on racial and ethnic disparities in employment services. Campbell, Bond, and Drake (2011) conducted a meta-­analysis to determine what subgroups benefit from supported employment and found that different diagnostic groups (including schizophrenia), all age groups, both men and women, different ethnic and racial groups, people with a diverse range of work history (including little or none), all levels of educational attainment, all levels of symptom severity, and those with an extensive hospitalization history all benefit from supported employment. The IPS supported employment model has been found to be more effective than alternative vocational rehabilitation models at improving the competitive work outcomes of clients with dual disorders (Mueser, Campbell, & Drake, 2011). Unfortunately, individuals with co-­occurring substance use disorders are less likely to enroll in supported employment programs than those without, despite a similar interest in employment (Frounfelker, Wilkniss, Bond, Devitt, & Drake, 2011). Middle-aged and older adults with schizophrenia have also been shown to benefit more from IPS supported employment than alternative models (Twamley, Narvaez, Becker, Bartels, & Jeste, 2008). Transition age youth and young adults have also been found to benefit from supported employment (Burke-­M iller, Razzano, Grey, Blyler, & Cook, 2012; Bond, Al-­Abdulmunem, et al., 2023), as have individuals participating in early intervention programs for first-­episode psychosis (Bond, Drake, & Luciano, 2015; Bond, Al-­Abdulmunem, et al., 2023). IPS may also be effective for justice-­ involved individuals with serious mental illness with modifications (Bond et al., 2015).

Nonvocational Outcomes What effect does supported employment have on illness management, psychological health, relationships, and quality of life? In some sense, this is an inappropriate question, because, in theory, it is employment itself (not supported employment services per se) that leads to nonvocational benefits. Since it is complicated and ethically problematic to assign interested volunteers randomly to competitive work versus no work, the question regarding nonvocational outcomes inevitably leads to correlational analyses, with all the inherent problems of nonequivalence. Nevertheless, several conclusions can be drawn from the existing literature: 1.  There seem to be few adverse effects of exposing people to supported employment or to employment itself. The studies of conversions of day treatment to supported employment support this finding by showing an absence of negative outcomes, contrary to predictions (Torrey, Clark, Becker, Wyzik, & Drake, 1997). This finding is important, because many mental health professionals were trained in the stress–­diathesis model of mental illness (Zubin & Spring, 1977), which was often the justification for providing low-­expectation, paternalistic environments and slow, stepwise approaches to rehabilitation (Bond, 1992). The stress–­diathesis model undoubtedly has much validity, but many

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PERSONAL EXAMPLE Carolyn Jacobs Gets an Academic Job Carolyn Jacobs was a 55-year-old woman with eccentric ideas, a flamboyant appearance, and a history of schizoaffective disorder. She had delusional ideas about a past job as an administrative assistant in a university and thought of herself as a professional academic, although she had no college degree and had not worked in many years. Her mental health team noted that Carolyn’s psychotic thinking had decreased with age but she remained socially isolated and lacked a meaningful work role in her life. When a supported employment specialist joined the team, she met with Carolyn to discuss employment. Because initial applications to the local university did not result in interviews, the employment specialist helped Carolyn to identify a nearby library as an appropriate work setting for an intellectual person. The mental health team agreed that library work without much contact with the public would be a good job match. Subsequently, the employment specialist helped Carolyn to secure a library job restacking books, initially on a trial basis and then as a permanent job. Carolyn took great pride in working with books and intellectuals, and the employment specialist helped Carolyn and her supervisors to resolve occasional interpersonal problems. Carolyn stayed in the job for over 10 years and was highly celebrated when she retired at age 67.

people point out—and population studies have confirmed—that unemployment can be much more stressful than employment (Ralph, 2000; Rogers, 1995; Steele & Berman, 2001; Warr, 1987). 2.  Correlational studies consistently show that employment is associated with nonvocational gains (Arns & Linney, 1993, 1995; Bond et al., 2001; Fabian, 1989, 1992; Mueser, Becker, et al., 1997; Siu, Tsang, & Bond, 2010; Van Dongen, 1996, 1998; Winsper, Crawford-­Docherty, Weich, Fenton, & Singh, 2020). Improvements associated with employment are typically greater in the areas of psychological health (e.g., self-­esteem) and quality of life (e.g., financial support) than in the area of illness management (e.g., symptom control). Perhaps the strongest study of this type is a case–­control comparison by Bond et al. (2001). In this study, people who were equivalent on other characteristics were selected because of working substantially in competitive versus sheltered settings. Outcomes showed that the group in competitive employment fared better (in terms of higher rates of improvement in symptoms; greater satisfaction with vocational services, leisure, and finances; and higher self-­esteem) than did those in a combined minimalwork–no-work group.

Dissemination Issues Because supported employment has now been used with research scrutiny in dozens of programs, guidelines for its implementation are clearer than those for implementing many other interventions (Becker & Bond, 2002; Becker, Swanson, Reese, Bond, & McLeman, 2015; Bond et al., 2001; Drake, Becker, Goldman, & Martinez, 2006; Swanson & Becker, 2018; Torrey et al., 2003). These guidelines are summarized in Table 11.3 and include several principles: starting with voluntary programs, so that early adopters can be models and training sites for other programs later; total collaboration between the departments of mental health and of vocational rehabilitation at the state and local levels;

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building consensus with all stakeholders (state authorities, local administrators, practitioners, and persons with mental illnesses), so that support and sustainability become part of implementation; and attending to the relevant tasks (e.g., adopting a new philosophy, training staff, changing medical records, and billing) during each of three phases: preparation, actual implementation, and maintenance. Table 11.3 describes these guidelines according to these three phases. Studies show that supported employment can be implemented broadly in routine practice settings (Drake & Bond, 2014). Indeed, one of the strengths of supported

TABLE 11.3.  Guidelines for Implementing Supported Employment Preparatory phase (6–12 months)   1.  Address the collaboration between mental health and vocational rehabilitation at the state and local levels. This typically includes planning, funding, supervising, training, and other functions at the state level. Locally, integrated interventions require regular personal contact among team members.   2.  Start with interested providers and programs. Early adopters have a better chance of success and can provide models, training sites, supervisors, and peer pressure for other programs.   3.  Plan for implementation locally (financing, structure of teams, training, supervision, records). Local problems of implementation are often unique to sites; problem solving must be done at the local level.   4.  When a program participant agrees, involve all stakeholders, including family members, practitioners, and administrators. Problems will need to be solved, and definite plans made, by each of these groups if any changes are to be solid and sustainable. Implementation phase (6–12 months)   5.  Train team members (employment specialists and mental health practitioners) for at least 1 year via regular supervision. Practitioners change their behaviors by first seeing new approaches in action and then having opportunities to try new rehabilitation skills with participants under regular supervision. It takes 6–12 months for practitioners to develop new skills and feel comfortable applying them routinely.   6.  Use an external trainer/supervisor initially if there is not a local supported employment expert. Supervision is often provided by telephone conference calls with the team. The external supervisor slowly backs out of the process as the local supervisor develops proficiency and takes over.   7.  Allow local teams to solve local problems. Many of the problems that arise are idiosyncratic to the local program, economy, health care environment, population, and so on. Again, problem solving must rely on local experts.   8.  Assess fidelity and outcomes regularly and independently (outside the team). Fidelity assessment is best done (at least initially) by someone who is independent of the local team, to assess principles of supported employment accurately. This assessor is usually an outside trainer to begin with, but the process can be shifted to local quality assurance procedures over time. If outcomes are consistently meeting benchmarks, ongoing fidelity assessment is unnecessary. Sustaining phase (continual following high-fidelity implementation)   9.  Value, measure, and track employment outcomes. The most important outcome is individual, satisfying, and lasting employment for people who want to work. Program personnel must monitor employment outcomes to ensure that they stay on course. 10.  Renew consultation and training if outcomes drop. If employment outcomes drop, a consultation, perhaps based on fidelity assessment, is indicated. 11.  Plan to incorporate new evidence-based components. Evidence-based practices, by definition, are based on current best evidence and therefore will change. Programs will therefore need to be updated by emerging research on a regular basis. This change should be part of staff expectations. 12.  Have local teams continue to solve local problems. Over time, idiosyncratic problems occur in each program, and local experts from multiple stakeholder groups need to be empowered to solve these problems.



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employment is its transportability; with a minimum of training and supervision, rehabilitation practitioners can join with routine mental health teams and learn the specific skills necessary to implement supported employment with good fidelity. In both the National Evidence-Based Practices Project (Torrey et al., 2001) and the Johnson & Johnson–­ Dartmouth Community Mental Health Program (Drake et al., 2006), evidence-based supported employment was implemented in a variety of routine settings, with results that were roughly comparable to those found in research studies. Barriers to dissemination and adoption include funding, the traditional separation of vocational rehabilitation and mental health services, and absence of a recovery-­oriented ideology. All of these barriers have been overcome in the previously cited demonstration projects without enormous external resources, and the projects have generally led to an expansion of supported employment programs in the states or regions where they were implemented. Long-term supported employment learning collaboratives, such as the one established via the Johnson & Johnson-­Dartmouth Community Mental Health Program, can result in high-­quality services with positive outcomes, sustainability, and innovation in supportive employment (Becker, Drake, & Bond, 2014).

Concerns about Supported Employment Some criticisms of supported employment have emerged. The most serious have to do with length of job tenure, long-term career trajectories, and costs.

Job Tenure One common concern regarding supported employment is that job tenure is relatively brief. In several RCTs (Luciano et al., 2014; Marshall et al., 2014), people who obtained work after supported employment were employed for about the same length of time as those enrolled in alternative programs; the average job tenure on the longest job was 21.3 weeks for supported employment participants, compared to 17.3 weeks for those in other programs. In some of these studies, participants were still employed at follow-up, resulting in an underestimate of actual job tenure. Nevertheless, evidence shows that tenure in initial jobs is relatively short. A counterargument is that short first-job tenure is not necessarily a negative outcome; new workers can be expected to try different jobs while they are learning what specific jobs are like, what kinds of work they enjoy, and/or what skills they possess. These are normal and appropriate steps in the process of becoming a steady worker and developing a career. Success ultimately entails developing long-term, satisfying jobs that people consider careers rather than simply the length of a first job. In other words, supported employment aims to help people attain a positive and satisfying longitudinal vocational trajectory.

Long-Term Employment Trajectories Long-term evidence on supported employment is just emerging, but studies indicate that people who have access to supported employment services over several years do work more over time and do acquire long-term, satisfying jobs more often (Salyers, Becker, Drake, Torrey, & Wyzik, 2004). Salyers et al. (2004) followed a small group of participants exposed to supported employment over 10 years following the closure of a day treatment program and found that 33% worked substantially over time. Moreover, their

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jobs at a 10-year follow-up tended to be long-term and competitive; participants attributed gains in several other areas, including hope, self-­esteem, and decreased substance abuse, to their success in employment. Cook, Burke-­M iller, and Roessel (2016) examined outcomes among supported employment participants, and found that they were more than three times more likely to be employed after 13 years compared with control participants, had significantly higher earnings per month, and were more likely to be able to terminate disability cash payments.

Costs Another set of concerns regarding supported employment pertains to its costs and cost-­ effectiveness. Latimer (2001) reviewed research from eight sets of studies (some databases were used in multiple evaluations) and concluded that supported employment programs were no more expensive than alternative approaches such as day treatment or sheltered employment; however, they did not produce substantial cost offsets, at least over the short term. This suggests that providing supported employment programs may increase costs relative to providing no vocational services and may be cost-­neutral relative to alternative vocational or rehabilitation approaches. One problem with Latimer’s review is that the constraints of controlled research often distort cost estimates that might occur under routine program conditions. Evidence on the costs of routine supported employment programs comes from a study of seven real-world programs operating with high fidelity to the IPS model (Latimer, Bush, Becker, Drake, & Bond, 2004). Costs per “full-year-­ equivalent participant,” which means the average cost of 1 year of continuous supported employment services per slot, were approximately $2,500 per year. Since some people change their minds about pursuing employment, and others obtain jobs and require little or no follow-up support—in both cases, opening slots for new clients—the costs per actual client served were considerably more modest. Some work suggests that largely due to the impact of supported employment on hospitalization rates (lower rates of hospitalization for those who receive supported employment relative to traditional vocational rehabilitation), savings for IPS supported employment are 54 cents per dollar relative to 18 cents per dollar for traditional vocational rehabilitation (Hoffman et al., 2014; Mueser, Drake, & Bond, 2016). Another problem with economic research is the short-term perspective. If people increase their time working and their independence from the mental health system over time, as suggested by the long-term follow-ups, the true economic impact of supported employment must be considered over decades, not years. In the long run, attachment to a job and immersion in a job-­related employment culture may improve health outcomes and reduce long-term public welfare dependency—by, for example, reducing use of illegal and legal substances, increasing activity levels, and increasing social contacts with family and friends. Even marginal improvements in health and functioning could have substantial cost impacts, due to the high costs of treating chronic conditions and of nursing home care. However, the longer-term economic effects of supported employment programs have not been addressed due to the limited availability of long-term data.

Current Challenges in Supported Employment Current challenges in supported employment include increasing access to such employment nationally, improving outcomes among participants who do not become steady workers, and enhancing outcomes among those who do become steady workers but are limited in their career development trajectories.

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Access Vocational rehabilitation of all kinds, and especially evidence-based supported employment, is grossly underfunded in the United States, and less than 2% of those receiving mental health services in the United States have access to IPS (Becker, Courtney, & Reese, 2022; Drake et al., 2016; Hogan, Drake, & Goldman, 2014; Mueser & Cook, 2016). Only about 2% of eligible people with serious mental illness access IPS supported employment, even though 60% of individuals with serious mental illness indicate that they want to work, and this may be due inadequate funding and a lack of methodology for large-scale expansion of IPS (Bond, Drake, & Becker, 2020). The underfunding of rehabilitation services for persons with disabilities who want to work in one of the wealthiest countries in the world—a country whose government purports to value economic self-­reliance—is a conundrum. Political leadership and advocacy in this area are obviously needed. The movement to adopt EBPs within state and local vocational rehabilitation and mental health agencies may help to overcome political inertia (Ganju, 2004). There is also hope that private foundations and industries will add resources to enhance access to evidence-based services (Mueser & Cook, 2016).

Improving Outcomes for Those with Limited Success Short-term studies (1–2 years) and long-term research (3–12 years) show that about 60–70% of participants who receive supported employment obtain at least one competitive job, but only about half of them become steady workers over years. In other words, perhaps one-third of participants do not attain competitive employment, while another one-third have limited success and do not become steady workers; the last one-third become steady workers. Barriers to full success for the middle one-third are multiple and complex. Factors such as socialization into disability, medication nonresponsiveness, inability to use medications effectively, co-­occurring medical illnesses, and lack of psychosocial supports are probably involved. Current research, however, focuses on two substantial barriers: economic disincentives and cognitive deficits. Disincentives within the benefits system are often seen by beneficiaries as constituting a barrier to employment (U.S. General Accounting Office, 1996). Many people who are exposed to supported employment decide that work is not their goal once they receive benefits counseling, grasp how little they will actually gain economically, and understand what they may risk by going to work (e.g., removal from the Social Security rolls and loss of health insurance). Some decide to work as volunteers, even though they have good employment skills, while declaring themselves retired or working “under the table.” Ongoing efforts are underway at the Social Security Administration and the Centers for Medicare and Medicaid Services to reconsider benefit regulations in order to offer more encouragement to people who want to work. These efforts include the Medicaid Buy-In program, the Ticket-to-Work program, extended waivers of Social Security review, research programs, and so forth. Research on the success of these programs in helping people to achieve economic self-­sufficiency through employment is mixed (Ferris, Hsu, Liem, Raymond, & Acri, 2022; Morris, 2020; Schimmel, Liu, & Croake, 2012; Shah, Mancuso, He, & Kozak, 2012; Stapleton, Mamun, & Page, 2014), but willingness to experiment with changing regulations is encouraging and likely to be at least partially successful. Opportunities for self-­employment or small business ownership may also improve long-term work outcomes for people with mental illness (Ostrow, Smith, Penney, & Shumway, 2019). The United States has historically invested in programs to

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support entrepreneurship among people with disabilities. Further research is needed to determine whether self-­employment leads to longer-term employment for people with serious mental illnesses, justifying funding of such programs. Another strategy to avoid disincentives due to losing benefits is to engage people in supported employment early in the course of their illnesses, before they acquire disability benefits, and before they are socialized within the mental health system. Nuechterlein et al. (2020) have been studying this strategy in a clinic for people experiencing a first episode of schizophrenia with remarkable results: 83% of the participants were working and/or attending school at 6- and 18-month follow-ups. These findings could fundamentally alter basic assumptions regarding disability, treatment, and rehabilitation. Another promising area focuses on cognitive deficits. Research shows that persistent cognitive deficits (e.g., difficulties with attention and problem solving), rather than lack of work skills, symptoms of illness, substance abuse, or other problems, constitute the most significant person-level barrier to employment success for people with psychiatric disabilities (Green, 1996; McGurk & Mueser, 2004). In theory, functioning on the job might be improved by interventions that address cognitive deficits: (1) better job matches to avoid specific cognitive limitations; (2) compensatory strategies, such as posted reminders, to help people overcome specific cognitive problems; (3) errorless learning training to address job-­specific problems; (4) cognitive enhancement training to improve cognitive functioning through computerized practice sessions that aim to stimulate the development of neurological connections; and/or (5) medications to enhance cognitive performance, such as those under development for dementia. These issues are more fully discussed in Chapter 13.

Enhancing Success for Steady Workers Long-term follow-up studies show that the majority of people who become steady workers decide to limit their work to part-time employment and do not get off benefits completely (Salyers et al., 2004; Drake & Bond, 2014). Anecdotally, many people indicate that they and their employers would prefer full-time employment, but participants are hesitant to give up benefits (especially health insurance), and employers are often unable to offer adequate health insurance. Whether the Medicaid Buy-In legislation, other changes in disability benefits, or other improvements in alleviating symptoms or cognitive deficits will enable people to work full-time is unclear at this point.

SUPPORTED EDUCATION Education status is strongly linked with income and employment status (U.S. Department of Labor, 2022), and identity as a postsecondary student is a common and developmentally appropriate goal for young adults. Many people are unable to pursue educational goals, in part because of the disabilities that evolve out of their psychiatric illness. Kessler and Merikangas (2004) estimated that about 4.9 million U.S. residents who would have participated in college failed because of the onset of psychiatric disorder. Major mental illness usually begins during the years when educational goals often peak (Sullivan-­Soydan, 2004)—the age when people need to determine what educationally comes after high school. Unfortunately, some people with psychiatric disabilities never make it out of high school, while others’ education is derailed during their college years. Data from the U.S. Department of Education’s Longitudinal Transition Study showed

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that the graduation rate of students with psychiatric disabilities is estimated at 35%—the lowest graduation rate of nearly every type of disability—and that students with serious mental illnesses are least likely of all disability groups to disclose their condition in order to acquire any accommodations to which they might be entitled (Newman et al., 2011). Earning a high school diploma is essential for entering the current work market. The demands of the 21st-­century economy seem to require postsecondary educational accomplishments as well. These kinds of achievement are directly related to size of income and attainment of benefits. In addition, higher education leads to more satisfaction with work. People completing postsecondary education are more likely to obtain vocations that parallel their values and interests. Moreover, such persons are more mobile in the job market: They can more easily seek other positions when they have certificates or degrees that specify their advanced abilities. Participation in education settings also meet some of the interpersonal needs of people with psychiatric disabilities (Mowbray, Collins, et al., 2005; Unger, 1993; Weiner, 1999). Peers with similar life goals (e.g., getting started in the work world) provide opportunities to make friendships, including those that may lead to more intimate interactions and perhaps life partnerships. There are also other, more personal goals that drive education. Participation in academic programs stokes a sense of inquisitiveness (Mowbray, Collins, et al., 2005; Mowbray, Brown, Furlong-­Norman, & Sullivan-­Soydan, 2002; Weiner, 1999). Instead of being passive to what is happening around them, educated individuals may more actively consider the public issues of their times (Alverson, Carpenter, & Drake, 2006). In this case, education is not solely driven by work goals. Education also yields a sense of pride and industry—pride in hard work, and industry in doing something that matters. Accomplishing educational goals helps to frame a person’s sense of identity. Moreover, it facilitates attainment of a life stage achieved by many adults: the stage at which a person can launch themself from the family of origin and start an independent life.

Supported Education Models Supported education models are a bit more diverse than supported employment models and lack a prototype like IPS. Instead, researchers have distinguished three overall perspectives that vary by participation in campus life and type of provider (Carlson, Eichler, Huff, & Rapp, 2003; Mowbray, Collins, et al., 2005; Mowbray, Moxley, & Brown, 1993):

• Self-­contained classrooms. Students with psychiatric disabilities participate in a

structured curriculum devised solely for them. This curriculum addresses career goals and basic academic skills. Self-­contained classrooms are typically time-­ limited and lead to courses that are more fully integrated into the college curriculum. • On-site support. Support is provided as persons enroll in and complete courses. The sources of support are in-house disabilities offices meant to help people with all sorts of disabilities in their pursuit of educational goals. • Mobile support. Interpersonal support is provided as in the on-site support model, although in this case, the providers are education coaches from the local mental health center. Note a commonality of these three approaches: Postsecondary education is the goal. Hence, these programs are mostly conducted in community colleges, certificate programs, or 4-year universities.

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The eight principles of IPS provide a framework for programs meant to help people attain educational goals—a framework that corresponds to many of the principles of supported education (Ellison et al., 2015). Table 11.4 lists the IPS principles as these are adapted to education, then juxtaposes these with commonly identified principles of supported education. In addition to highlighting similarities, this comparison summarizes notable differences between supported education and IPS—disparities that need to be addressed when IPS is extrapolated to education. 1.  Placement in integrated educational programs, not special education. The first supported education programs were notable for their focus on postsecondary education— namely, on helping people with their educational goals in community colleges (Mowbray, Collins, et al., 2005; Sullivan-­Soydan, 2004; Unger, 1993). Despite this real-world focus, it is interesting to note that specific practices to achieve postsecondary goals vary from special self-­contained classrooms (Weiss, Maddox, Vanderwaerden, & Szilvagyi, 2004) to clubhouse models where basic educational skills are addressed and the provision of transportation services and financial aid is considered (Holter & Paul, 2004). 2.  Rapid search and placement in schools. Supported education programs differ in rapid placement goals. Some programs seem to encourage quick placement when people are ready (Mowbray, Collins, et al., 2005). Others have identified hurdles that may need to be addressed before actual placement may begin (Mowbray, 2004; Unger, 1993). Hurdles include the need to learn basic reading, writing, and arithmetic skills; resolving past and current financial aid problems; and waiting for the first day of the semester to actually start schooling. These differences suggest ways in which IPS may need to be changed to meet the goals of education or in which supported education goals need to evolve. 3.  Integration of three principal systems. As in supported employment, there are historically independent services that need to be brought together for a strategic and

TABLE 11.4.  Principles/Practices of IPS Adapted for Education, and Corresponding Principles of Supported Education Adapted IPS principles/practices

Principles of supported education

• Schooling in integrated settings

• Focus on genuine goals (postsecondary education

• Rapid educational placement

• Quick placement versus need to await/resolve

• Integrated education and mental health

• Integration of diverse goals (those of schools,

• Consumer choice about schooling

• Consumer preference as the foundation of a

• Continual assessment • Time- and place-­unlimited support • Benefits counseling

• Incorporation of course grades into rehab plans • Central focus on support • Entitlements that work for the person and are not

• Educational opportunity development

• Supported education specialists develop

services

Note: IPS, individual placement and support.

or high school)

educational first steps

disability services, and mental health services) “choose–get–keep” philosophy

barriers to change

relationships with local training programs, colleges, and universities

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organized approach to the person’s education (Sullivan-­Soydan, 2004). These include the school itself and the set of regulations that effect matriculation; the disability office within the school, charged with setting up reasonable accommodations; and the mental health system, seeking to help people overcome their psychiatric disabilities. 4.  Participant choice. Also as in supported employment, participant choice is fundamental to supported education. The “choose–get–keep” model has been adapted for education goals (Danley, Sciarappa, & MacDonald-­Wilson, 1992; Sullivan-­Soydan, 2004). The choosing phase helps the person identify and decide on various options related to education: practical issues such as where and when, plus value-­related issues, such as the kind of employment to be sought after education. Research has shown that people with psychiatric disabilities are able to generate job preferences that are stable and realistic (Becker et al., 1996). 5.  Continuous assessment. School systems have built-in mechanisms for regularly collecting data about progress; these include test scores and course grades. Assessment is not limited to academic performance, however; other processes related to successful education need to be assessed. These may include interpersonal goals (e.g., becoming friendly with fellow students) and problem-­solving efforts (e.g., the steps people may need to take to obtain reasonable accommodations from instructors). 6.  Time- and place-­unlimited support. Support from service providers may be especially important as a person learns to obtain such resources from fellow students and friends. The “choose–get–keep” paradigm (Sullivan-­Soydan, 2004) highlights the longterm need of support for the person seeking further education. 7.  Entitlements that work for each person. A different set of entitlements influences a person’s participation and success in education programs; these include benefits programs that pay for education. For this reason, students with psychiatric disabilities need counseling to stay abreast of public entitlements. 8.  Educational opportunity development. Employment specialists must work with local training programs, colleges, and universities to develop educational opportunities that meet the needs of students with serious mental illnesses.

Research on Supported Education Although supported education makes sense and parallels many of the principles and practices of supported employment, research on it is surprisingly lacking. Most studies to date have addressed both educational and vocational goals using supported education (Hillborg, Lövgren, Bejerholm, & Rosenberg, 2021). Two systematic reviews have been published on supported education (Leonard & Bruer, 2007; Rogers, Kash-MacDonald, et al., 2010). These, and several other studies published since, suggest that supported education helps individuals progress toward educational goals and increases positive self-­ esteem and self-­perceptions, and that individuals report satisfaction with supported education services (Ringeisen et al., 2017). Most studies report on educational engagement, but not on educational attainment outcomes. Greater methodological rigor is needed to more thoroughly examine whether supported education programs lead to greater educational attainment and more meaningful employment. Clearly, more research is necessary to establish the impact of supported education, including efforts to examine IPS as a suitable framework.

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Peer Coaching A fairly recent augmentation to the IPS supported education model is the addition of peer coaches in educational settings. Corrigan and colleagues (2020) have conducted CBPR with postsecondary stakeholders, including students with psychiatric disabilities, faculty, and staff, to examine perspectives of using peer coaches in supported education. Interviews with these stakeholders generated a list of perceived strengths and challenges of utilizing peer coaches in educational settings. Identified potential strengths included assistance with service navigation, alleviation of feelings of loneliness, assistance with managing school demands, and support with relevant skills (i.e., academics, time management, self-care, career development, and maintaining appointments). Potential challenges included finding suited peers, addressing potential burnout among peers, providing training and supervision for peers, and matching coaches with the student. This model of educational coaching is currently going through feasibility, fidelity, and preliminary effectiveness testing. Another emerging model of supported education on college campuses proposes a curriculum including peer coaching, delivered directly by the 4-year academic institution to their undergraduate students (Davis et al., 2022). Almost all the other studies of supported education have looked at programs delivered by the vocational rehabilitation provider. This newer supported education model is called Peer Academic Supports for Success (PASS). In the PASS model, coaching is defined as a “goal-­directed, results-­ oriented, systematic process in which one person facilitates sustained change in another” (Cavanagh & Grant, 2006). Psychiatric rehabilitation providers (in the case of PASS peer coaches) utilize coaching strategies to assist students with psychiatric disabilities to learn and use skills and supports in relation to their educational goals. PASS coaches are trained with regard to the specifics of the coaching role, campus resources, skills such as listening, responding, empathy, crisis response, suicide prevention, and motivational interviewing. PASS coaches’ training also covers many potential coaching activities such as time management activities, and planning worksheets for preparation for exams. A preliminary feasibility study of PASS was conducted with 12 students with psychiatric disabilities, demonstrating that PASS can be delivered with fidelity by peer coaches, the program can attract and retain students, and is safe. Results of this preliminary work suggest that PASS has significant positive effects on time management, resilience, self-­ efficacy, and self-­determination among participants. Additional research will be necessary to build an evidence base for this intervention.

SUMMARY AND CONCLUSIONS The field of vocational and educational rehabilitation for people with psychiatric disabilities has moved rapidly over the last three decades, with supported employment now resting on a solid base of evidence. In fact, the success of supported employment has raised expectations for treatment and rehabilitation in general; changed the way most mental health practitioners think about rehabilitation; and supported the ideologies of recovery, inclusion, and community integration with strong data. We now know that most people with mental illness want to work competitively and can do so. Moreover, employment seems to help them in other areas of their lives, and long-term benefits appear to be even better than short-term benefits. Ideally, an expanded drive to examine supported education will yield similar findings.

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The success of supported employment has inspired and invigorated movements to reconsider financing of mental health and vocational services, to change benefit and insurance plans, to develop innovations that would improve vocational outcomes further, and to develop supported education services. Despite some challenges, supported employment continues to expand both in the United States and internationally, because it addresses a basic need expressed by most people with mental illness: to work and contribute to society.

C H A P T E R 12

Family

P

ublic beliefs about psychiatric illnesses influence the ways in which families of people with these disorders are engaged. These beliefs affect whether families are included in the treatment process and offered assistance in coping with the disorders (Solomon, 1998). At the height of the asylum era, families were considered passive causes of these disorders through their failure to protect their relatives from societal stresses (Terkelsen, 1990). Separation from the families was therefore considered to protect the persons from the stress resulting from community pressures (Terkelsen, 1990). Subsequently, family members (specifically, parents) were viewed by mental health practitioners as primary active causal agents of their relatives’ mental illness (Gelkopf & Roe, 2014). According to psychodynamic and family interactional theories of etiology, separation of the relatives with psychiatric disabilities from their families was essential to resolve the parental factors causing illness (Lefley, 1996). Consequently, families were not only ignored and kept uninformed but also blamed for having caused the disorders. Fortunately, psychodynamic explanations of mental illness eventually lost their credibility, and it is widely recognized that families can play a vital role in supporting their loved one’s recovery (Burgess, Pirkis, Coombs, & Rosen, 2011). A combination of biological and environmental factors was subsequently invoked to explain the onset and course of mental illness (Miklowitz, 2008; Morey & Mueser, 2007; Mueser & Gingerich, 2006). In this light, family dysfunction may be seen as a possible consequence rather than a cause of the illness (Lefley, 1996). These new theories resulted in paradigmatic shifts away from blaming families to recognition that families are invaluable, and often essential, resources both to their relatives with psychiatric disabilities and to the rehabilitation team (Pope, Jordan, Venkataraman, Malla, & Iyer, 2019). This new attitude precipitated a need to understand a family’s experience of coping with a relative with a severe psychiatric disability. Research fi ndings led to development of interventions for assisting family members in helping relatives manage their illness and achieve their goals (e.g., returning to school or getting a job). In the process, family members may realize that they have legitimate goals, separate from those of their relatives with psychiatric disabilities. For example, aging parents may be concerned about an adult child’s living independently outside their home, but may realize that their goals are incompatible with the child’s continuing to live with them. In this situation, family interventions help all parties negotiate changes in plans. 211

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212

This chapter first presents information on a family’s experience of having a relative with a psychiatric disability, as well as on corresponding family needs. Various family interventions are then described, as well as research evidence related to their effectiveness. The final section presents issues and interventions related to persons with psychiatric disabilities as parents.

THE FAMILY EXPERIENCE OF MENTAL ILLNESS Having a relative with a psychiatric disability affects all members of the person’s immediate family, whether a family member is the primary caregiver or not. Although reactions differ among individuals, as well as among those with different relationships to the relative, effects of the illness are felt by parents, spouse/partner, siblings, and children (Karnieli-­M iller et al., 2013; Leith, Jewell, & Stein, 2018; Morey & Mueser, 2007). At least three-­quarters of persons with psychiatric disabilities have some type of ongoing contact with their families (Harvey, 2018; Lehman & Steinwachs, 1998; Macias, Gold, & Jones, 2013). From 30 to 65% of persons with a psychiatric disability are estimated to live with their families (Beeler, Rosenthal, & Cohler, 1999; Kaufman, Scogin, MacNeil, Leeper, & Wimberly, 2010; Miklowitz, 2008). Family members (especially parents) often assume the role of caregivers, for which they are neither trained nor psychologically prepared (Doornbos, 2001; Lefley, 1996; Hatfield, 1987). Families must learn to cope with symptoms and dysfunctions of the illness, as well as the vagaries of the various service delivery systems: mental health, social welfare, Social Security, vocational systems, substance abuse services, and in some instances the criminal justice system. For the most part, parents and spouses/partners, rather than siblings, children, or other family members, care for relatives with psychiatric disabilities. Therefore, most of the research related to the experience of caregiving has focused on parents and spouses/ partners. Nevertheless, a few studies have assessed siblings in the provision of care (Jewell, 2002; Johnson, 2000; Kinsella, Anderson, & Anderson, 1996; Leith & Stein, 2012; Stein, Gonzales, Walker, Benoit, & Russin, 2020). Since the provision of care may be based on a hierarchy of family obligation, siblings may assume care for relatives as parents age, become frail, or die (Pillemer & Suitor, 2014)). Horowitz, Tessler, Fisher, and Gamache (1992) found that the quality of relationship between siblings was a predictor of whether a sibling without mental illness would assist one with illness. Three distinct patterns of care by siblings have been determined: collaboration with the primary care providers; assistance in crisis situations; and detachment, constructive escape, or unhealthy escape from a brother or sister with a psychiatric disability in order to protect their own psychological stability (Gerace, Camilleri, & Ayers, 1993; Kinsella et al., 1996).

Family Burden Objective and Subjective Burden Psychiatric disability may place an enormous burden on families. Burden is frankly a troubling term, suggesting people with psychiatric disability are somehow bringing unnecessary challenges to their family. We prefer to frame burden as the joint challenges which people and family address in their joint path to recovery. Hoenig and Hamilton (1966) framed burden as having two components: objective and subjective burden. (Both these aspects of this complex experience are summarized in Figure 12.1.) Objective

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PERSONAL EXAMPLE A Family Counselor Helped the Madison Family Mary Jane Madison, a widowed mother in her late 60s, was very concerned about her son, Bill, who had paranoid schizophrenia and abused alcohol, but refused treatment. He had been hospitalized several times, and recently had been in jail because of an assault against his mother. Mrs. Madison was afraid to have Bill live with her. He was currently on SSI and living in an apartment where he worked for the landlord. The mother sought help from a family counselor. She was worried that the landlord was taking advantage of her son, and that Bill’s abuse of alcohol and noncompliance with treatment would result in his getting into further trouble. The counselor educated Mrs. Madison about schizophrenia and available treatment resources. Armed with this information, Mrs. Madison realized that Bill was entitled to a care coordinator. The care coordinator then arranged for a more structured living arrangement, a change in medication, and the services of a representative payee so that Bill would not spend his money on alcohol. He successfully remained out of the hospital for the next 4 years.

burden consists of the directly observable costs that result when the family addresses the needs of the of the family member with a psychiatric disability, including financial costs of care, as well as daily challenges imposed on the family because of the psychiatric illness. Subjective burden is the family discomfort or emotional strain experienced as a direct consequence of the disability. Burden is distinguished from general distress; burden is associated with problems that directly result from psychiatric illness, whereas distress relates to poor mental health, psychological morbidity, or life strain not attributable to the relative’s illness. Research has found that having a high degree of burden leads to high stress and poor physical and mental health among all family members (Greenberg, Hilton, Li, Lu, & Mailick, 2021; Karambelas et al., 2022) A recent systematic review examined findings from 28 studies on caregiver burden in schizophrenia spectrum and bipolar disorders (Karambelas et al., 2022). Across the studies examined, about one-third were parents (32.3%); about one-­fourth (24.4%) were

Ill relative characteristics • Symptomatology • Living arrangement • Treatment acceptance– rejection

Objective burden • Relative’s disruptive behavior • Impact of relative on household • Support needs of family • Family financial costs

Mediating factors • Coping strategies • Mastery • Self-esteem • Social support • Socioeconomic status • Quality of relationship • Gratification of caregiving

Subjective burden

Mental and physical health of family members • Distress • Physical health • Mental health • Family functioning

FIGURE 12.1.  Family consequences of subjective and objective family burden.

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spouses; 12.4% were siblings, 4.3% were children, and 11.9% had other relationships. The relatives with the psychiatric disabilities had a schizophrenia spectrum disorder (47.9%) or a bipolar disorder (32.7%) and other mental health conditions (19.4%). Findings overall indicated that family caregivers experience high levels of burden, and diagnosis did not differentiate level of burden. An earlier literature review by Baronet (1999) examined objective and subjective caregiver burden. Not surprisingly, objective burden was related to tasks of caregiving, while subjective burden was associated with disruptive behavior due to the disability. Objectively burdensome activities included provision of transportation; assistance with money management, cooking, and other housework; continuous supervision; limitations of caregivers’ personal activities; and provision of financial assistance. Subjectively burdensome concerns included the relative’s safety and potential for violence toward family members; excessive demands on the caregivers; night disturbances disrupting caregivers’ sleep; embarrassing behaviors; worries about future goals; and conflicts causing significant family hardships (Baronet, 1999). Of the 28 studies reviewed by Baronet (1999), 15 assessed predictors of burden. A caregiver’s youth, being White (Horowitz & Reinhard, 1995; Pickett, Vraniak, Cook, & Cohler, 1993; Stueve, Vine, & Struening, 1997), and living with the relatives with mental illness (Jones, Roth, & Jones, 1995; Pickett, Greenley, & Greenberg, 1995) were related to higher burden. Younger age of the caregiver was specifically associated with stigma, fears regarding safety, and higher levels of overall burden (Greenberg, Kim, & Greenley, 1997; Pickett et al., 1995; Horowitz & Reinhard, 1995; Stueve et al., 1997). Burden was not associated with caregiver’s or relative’s gender or education, family income, or the caregiver’s relationship to the relative (Baronet, 1999). Presence of symptomatic behavior had the strongest and most consistent relationship with high level of burden, but diagnosis was not related to burden (Baronet, 1999). Negative symptoms seem to be more problematic for families than positive ones (Fadden, Bebbington, & Kuipers, 1987; Hooley, Richters, Weintraub, & Neal, 1987; Oldridge & Hughes, 1992), perhaps due to their stable, ongoing nature (Mueser & Glynn, 1999). Jungbauer and Angermeyer (2002) found that burden varied by the phases of schizophrenia. The onset of this disorder is a time of high stress due to the shock and feeling of helplessness. At this point, families frequently do not connect the persons’ experiences to mental illness. As new episodes recur, burden intensifies, but usually not as greatly as during the initial episode. At other times, families experience chronic, everyday burdens of coping with their relatives. More recently, researchers have moved away from focusing primarily on the concept of burden to considering the impact of caregiving on quality of life and the physical and mental health of family caregivers. In a systematic review of factors associated with family members’ quality of life, Lima-­Rodriguez, de Medina-­Moragas, Fernández-Fernández, and Lima-­Serrano (2022) examined 15 studies and categorized factors into five categories: individual, family, patient, disease process, and context. Individual factors associated with lower caregiver quality of life included being female, single, unemployed, less educated, and having less knowledge about their loved one’s illness. Family-level factors associated with lower quality of life included the caregiver being the parent, having two or more dependents, lower income, and living with the person with serious mental illness. Patient-level factors associated with lower caregiver quality of life included younger age, being unemployed, having a worse clinical status, more hospitalizations, and having a diagnosis of depression compared to schizophrenia. Factors related to the disease process associated with lower caregiver quality of life included disease onset before age 45, longer duration of exposure to illness, perceptions that the disability is under the person’s

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control, higher subjective and objective burden, and greater family alienation. Contextual factors related to lower quality of life included higher social stigma and lower social support. While some of the factors identified may be immutable, the review identified factors in several categories that could be addressed by rehabilitation counselors working with people and their families (e.g., knowledge about the illness, perceptions of control of the illness, social support). Research has also considered the impact of caring for a loved one with a serious mental illness on the physical and mental health of family members. Barker, Greenberg, Seltzer, and Almeida (2012) found evidence of hypoactivated daily cortisol in response to stress among parents of adult children with serious mental illness, suggesting a physiological impact. Greenberg and colleagues (2021) found negative impacts of caregiving on measures of caregiver physical and mental health that maintained when controlling for genetic vulnerability for poor mental health outcomes. The authors indicated that this confirms the negative impact of caring for a child with serious mental illness “above and beyond genetic vulnerability” (p. 420). Given the nature of schizophrenia and other serious mental illnesses, family members of a person with such an illness also experience a sense of loss or “chronic sorrow” for the person the relative was before the illness, and for the lost potential of what the relative could have been (Richardson, Cobham, Murray, & McDermott, 2011; Williams-­ Wengerd & Solheim, 2021). Unlike the death of a relative, this sense of loss can be an ongoing process of grieving, as family members are continually confronted with the loss. The degree of burden has been found to be correlated with this grief (Møller, Gudde, Folden, & Linaker, 2009; Solomon & Draine, 1996).

Violence Most people with serious mental illness are not violent. However, they are at a modestly increased risk of committing violence against others (Fazel, Gulati, Linsell, Geddes, & Grann, 2009; Fazel, Lichtenstein, Grann, Goodwin, & Långström, 2010), with approximately half of all violent acts committed by people with serious mental illness being against family members (Estroff, Swanson, Lachicotte, Swartz, & Bolduc, 1998; Monahan et al., 2001). In a national online survey of 573 adults with an adult family member with serious mental illness, most of whom had frequent contact with their relative, Labrum and Solomon (2017) found that 47% had experienced violent victimization by their relative since the onset of the relative’s illness. Twenty percent had experienced serious violence, defined as resulting in physical injury or involving a weapon. Twenty-two percent reported any victimization by their relative with mental illness, and 8% reported experiencing serious violence in the past 6 months. Research has identified factors associated with violence by people with serious mental illness toward their family members. Younger age, lower education and income, drug and alcohol use, and low treatment engagement have been found to increase risk of violence toward family members (Labrum & Solomon, 2016; Swan & Lavitt, 1988; Vaddadi, Soosai, Gilleard, & Adlard, 1997). Risk of family violence increases when the person with serious mental illness is financially dependent on the family member, particularly when family members act as representative payees (Elbogen, Swanson, Swartz, & Van Dorn, 2005; Estroff et al., 1998; Labrum & Solomon, 2016). In several studies, family members have reported that efforts at limit setting and or insisting their relative with serious mental illnesses take medications preceded at least half of all acts of family violence (Labrum & Solomon, 2016; Straznickas, McNiel, & Binder, 1993; Varghese,

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Khakha, & Chadda, 2016). Higher level of contact and poor-­quality premorbid relationships between persons with serious mental illness and family members also increases risk of violence toward family members (Labrum & Solomon, 2016; Vaddadi et al., 1997; Vaddadi, Gilleard, & Fryer, 2002). Labrum, Zingman, Nossel, and Dixon (2021) suggest that promising strategies to reduce violence toward family members may include strengthening support services for people with serious mental illness so they are less reliant and financially dependent on family members, improving strategies to engage people in treatment, and enhancing family members’ abilities to prevent and manage conflict.

Family Stigma Stigma can be another significant source of burden for family members (Gela & Corrigan, 2014). Family stigma, or courtesy stigma (see Chapter 2), may be subtyped according to the three types of stigma experienced by people labeled with a mental illness: public stigma, self-­stigma, and label avoidance. Public stigma may be experienced by family members in various ways, including the use of derogatory language to refer to the family, gossip and slander, remarks or questions that connote blame or criticism of the family for the condition, pity, unwelcome and patronizing advice, stares in public, and social avoidance or exclusion (Larson & Corrigan, 2008; Norvilitis, Scime, & Lee, 2002). Self-­stigma occurs when a family member internalizes stigmatizing views held by the general public regarding the family member’s association with the individual diagnosed with mental illness. This type of stigma is associated with shame and other various forms of psychological distress (Hasson-­Ohayon, Levy, Kravetz, Vollanski-­Narkis, & Roe, 2011; Tsang, Tam, Chan, & Cheung, 2003; Wahl & Harman, 1989). Label avoidance occurs with respect to family stigma when a relative fears being identified or labeled as a family member of a person diagnosed with mental illness. In order to avoid such labeling, the relative may discourage the family member with mental illness from pursuing activities that could result in that individual’s being labeled, or the relative may not seek out services for the ill person. For example, label avoidance in family stigma could manifest itself as a parent not seeking treatment for a child in order to avoid the child being labeled, or to avoid potential blame for their child’s problems. Family members experience an additional type of stigma: vicarious impact. Research shows that family members suffer from witnessing the negative impact of prejudice and discrimination on a relative with mental illness. As many as two-­thirds of family members in several studies expressed concern about the stigma experienced by their relatives (Angermeyer, Schulze, & Dietrich, 2003; Struening et al., 2001; Wahl & Harman, 1989). Family members widely agree that stigma hurts their relatives’ self-­esteem, ability to keep friends, success in finding and obtaining a job or place to live, and acceptance by mental health professionals, and that it represents a major hurdle to the recovery of their relatives.

Positive Aspects of Caregiving As stated earlier, some families and people with psychiatric disabilities find the term family burden offensive, because it frames caregiving as solely a negative experience. Szmukler (1996; Szmukler et al., 1996) suggest describing caregiving more globally, including both positive and negative experiences. There has been less research on the positive aspects of caregiving; however, this is changing. Chen and Greenburg (2004)

12. Family 217 

assessed over 500 caregivers of people with schizophrenia spectrum disorders and found many reported gains such as becoming more sensitive to people with disabilities (~70%); clarifying priorities and a greater sense of inner strength (>50%). Shiraishi and Reilly (2019) assessed 23 studies of the positive and negative impacts of schizophrenia on family caregivers, finding evidence of positive impacts related to the following categories: affection, compassion, family solidarity, self-­confidence, personal growth, deep understanding affirmation, admiration, and appreciation. Research also suggests that adults with serious mental illnesses not only receive but they also provide assistance to their family members. A study of electronic health records of veterans with serious mental illness found regular mentions of help being given to or from family members, with 41% of the veterans with serious mental illness providing assistance or support to family members, often in a reciprocal relationship (Haselden et al., 2018). Labrum (2020) analyzed data from a survey of 573 adults with a relative with a serious mental illness and found that 61% provided assistance to and 37% reported receiving assistance from the person with serious mental illness. Assistance provided by the relatives with mental illness included assistance with activities of daily living and finances.

Expressed Emotion Although families are no longer considered causal agents of psychiatric illness, there are concerns that some family qualities may exacerbate psychiatric illness and hasten the return of the relatives with psychiatric disabilities to the hospital. Research in Britain, conducted more than 50 years ago, found that people who were discharged from psychiatric hospitals and returned to close family relationships high in negative family affect were more likely to deteriorate and return to the hospital (Brown, Monck, Carstairs, & Wing, 1962). This finding has been replicated in subsequent studies (Butzlaff & Hooley, 1998; Hooley, 2007; Kreisman & Blumenthal, 1995). This negative affect was termed expressed emotion (EE), which was operationally defined as criticism (critical comments [CCs]), hostility, and emotional overinvolvement (EOI) directed by family members toward their relatives with serious mental illness (Brown & Rutter, 1966). Buzlaff and Hooley (1998) conducted a meta-­analysis of the relationship of EE to psychiatric relapse, confirming a robust relationship between the two. They further concluded that EE was a stronger predictor of relapse for mood and eating disorders than for schizophrenia spectrum disorders. Separate reviews of studies have confirmed the robustness of the empirical relationship between EE and relapse (Weintraub, Hall, Carbonella, Weisman de Mamani, & Hooley, 2017), and the course of depression, posttraumatic stress, personality disorders, and alcoholism (Wearden, Tarrier, Barrowclough, Zastowny, & Armstrong Rahill, 2000). Buzlaff and Hooley (1998) also found that the relationship was strongest for those with the most long-­standing illnesses. There is evidence that EE (or aspects of it) is a state rather than a trait and can change over time (Boye et al., 1999; Schreiber, Breier, & Pickar, 1995) and may vary by the stage of a person’s illness (Gómez-de-Regil, Kwapil, & Barrantes-Vidal, 2014). Research also suggests that levels of EE and its impact vary across cultures and socioethnic backgrounds (Bhugra & McKenzie, 2003; Hashemi & Cochrane, 1999; López et al., 2009; Singh, Harley, & Suhai, 2013). A growing body of recent literature has considered EE in families of individuals experiencing at-risk mental state (ARMS) for psychosis. In their systematic review, Izon and colleagues (2021) found evidence of high EE in approximately one-third of ARMS

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relatives. Higher levels of criticism and hostility were associated with symptoms, poorer functioning, and increased depression, anxiety, and distress. Higher levels of warmth in conjunction with better family functioning was associated with improved symptoms and functioning. One of the studies included in the systematic review (Haidl et al., 2018) found that “perceived irritability” of a key relative, an element of the Level of Expressed Emotion Scale (Cole & Kazarian, 1988), was a predictor of conversion into first-­episode psychosis for high-risk patients. Studies have found a relationship between EE and a family’s beliefs about a mental illness—­beliefs that may play a role in the relapse of the relative with the illness (Barrowclough & Hooley, 2003; Domínguez-­Martinez, Medina-Prada, Kwapil, & BarrantesVidal, 2017; Wearden et al., 2000). Family members who are hostile and critical, or have high EE, are more likely to view symptoms of their relative’s illness as residing within the relative’s personal control than are family members with low EE (Domínguez-­Martinez, Medina-Prada, Kwapil, & Barrantes-Vidal, 2014, 2017; Barrowclough, Johnston, & Tarrier, 1994; Vasconcelos e Sa, Wearden, & Barrowclough, 2013; Weisman, Nuechterlein, Goldstein, & Snyder, 1998). Family members with high EE face many difficulties and experience higher levels of distress (Kageyama & Solomon, 2018; Domínguez-Martínez, Medina-­Pradas, Kwapil, & Barrantes-Vidal, 2017). They report experiencing higher levels of family stigma (Cherry, Taylor, Brown, Rigby, & Sellwood, 2017; Phillips, Pearson, Li, Xu, & Yang, 2002); care burden (Möller-Leimkühler & Jandl, 2011; Wang, Chen, & Yang, 2017), and physical violence from their family member (Amaresha & Venkatasubramanian, 2012; Kageyama & Solomon, 2018). Cherry et al. (2017) assessed eight studies that measured EE dimensions of EOI and CCs, along with guilt and shame, and concluded that, overall, there was evidence that EOI was associated with both guilt and shame, while CCs were associated with shame. Noting that they could not confirm directionality of these relationships, the authors suggest that interventions targeting guilt and shame may be useful. Like the concept of family burden, the concept of EE has been criticized by families and providers alike (Solomon, 1996). Low and high EE seem to suggest “good” and “bad” families, respectively, and these suggestions may be directly or indirectly communicated to families by practitioners. This may lead once again to blaming families and causing them guilt—this time for affecting the course of the illness rather than causing the onset of the disorder (Bernheim & Lehman, 1985; Platman, 1983). EE has also been criticized for blinding practitioners to the potential support and assistance that families provide to their relatives with psychiatric disabilities. In addition, family members who believe that the negative attributes of EE apply to them may become more alienated from the mental health treatment system, which can have negative consequences for the relatives with psychiatric disabilities (Hatfield, Spaniol, & Zipple, 1987). However, understanding EE and the experiences of families is critical to the development of family interventions and supporting families that are struggling to care for a loved one with a psychiatric disability.

FAMILY NEEDS Family members of persons with psychiatric disabilities desire information about their relatives’ disorders in terms of diagnosis, prognosis, and treatments. Noncaregiving relatives, including siblings and children, also want information about these illnesses in order to enhance their coping (Biegel, Mulligan, Putnam, & Song, 1994; Doornbos, 2001; Greenberg, Greenley, & Kim, 1995; Hatfield et al., 1987; Kinsella et al., 1996). Needs

12. Family 219 

of families differ by diagnosis and whether families participate in self-help groups (Mueser, Bellack, Wade, Sayers, & Rosenthal, 1992). A family’s needs may include knowing appropriate expectations, learning how to motivate a relative, understanding the relative’s disorder, planning for their relative’s future, advocating for better services for their relative, and navigating housing and rehabilitation services (Drapalski et al., 2008; Hatfield, 1983). Family members also wish to learn skills to cope with the illness and its effects on the whole family, and to receive support for themselves in dealing with the stresses and strains (Lefley, 1996; Marsh, 1998; Hatfield, 1994b). Despite these needs, early researchers found a good deal of discrepancy between what families wanted and what they received from rehabilitation counselors (Hatfield, 1983), and similar findings have since been obtained. Families report a lack of understanding from some mental health practitioners (Doornbos, 2001; Solomon, Beck, & Gordon, 1988a, 1988b)—practitioners who seemingly have little comprehension of the burdens faced by families (Kaas, Lee, & Peitzman, 2003). Mueser, Webb, Pfeiffer, Gladis, and Levinson (1996) found that professionals, in comparison to family members themselves, underestimated the degree of burden associated with negative and positive symptoms in people with bipolar disorders compared to those with schizophrenia. Furthermore, families often feel rejected, ignored, and blamed for their relatives’ disabilities by mental health practitioners (Fisher, Benson, & Tessler, 1990; Kaas et al., 2003). Lefley (1996) described the stress that families feel from the system’s indifference to them as iatrogenic burden. Families are often dissatisfied with the services they receive from mental health practitioners (Dockery et al., 2015; Grella & Grusky, 1989; Hanson & Rapp, 1992; Solomon, 1994; Spaniol & Zipple, 1988), although some of these researchers did find that families had a relatively good amount of contact with care coordination services. Families seemed more satisfied with care coordination services (Grella & Grusky, 1989; Solomon, 1994; Solomon & Draine, 1994). Family members want to be involved in the treatment planning process for their relative and report higher satisfaction with services when they perceive greater collaboration between themselves and their relative’s treatment provider (Perreault, Rousseau, Provencher, Roberts, & Milton, 2012). They feel that they have much to offer practitioners by being included in the treatment process (Doornbos, 2001). For example, family caregivers are in a position to monitor medication and side effects. They are frequently the first to notice a subtle return of symptoms or signs of substance abuse in their relative (Herz, 1985). Family members are therefore able to provide information to providers that would not otherwise be available to them (Doornbos, 2001). Without ongoing contact with providers, families often give up trying to communicate information to practitioners who can intercede to prevent a crisis from occurring (Leazenby, 1997). Although there have been efforts to promote collaborative relationships between providers and families, a survey of families found that they received little information regarding their relatives’ treatment plans (Marshall & Solomon, 2000). Providers need to keep in mind that although family members may be excellent partners in deciding goals and establishing rehabilitation plans, people with disabilities still have the right of self-­determination. Sometimes family members and relatives with disabilities may disagree about specific plans. Rehabilitation counselors may try to reach a consensus, but the final decisions in such a situation are those of the person with disabilities. There is typically no black-and-white moment when a rehabilitation counselor can say, “Time to stop. We are going to focus on Mary Beth’s going back to college, according to her request.” Such a discussion is often a dynamic and ongoing process. Still, the rehabilitation counselor is the agent of the person with disabilities, not the family members,

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and is therefore ultimately bound to honor their preferences. This does not mean that the family members must passively accept goals that do not correspond with theirs. Instead, family members and the person with the disability should seek a third-party counselor who strives to mediate between them.

FAMILY INTERVENTIONS Researchers partnering with providers have developed a variety of interventions meant to enhance families’ capability to improve outcomes for relatives with psychiatric disabilities. These are reviewed in Table 12.1 and include a variety of approaches to psychoeducation; family consultation, and support; planned lifetime assistance; and respite care.

Psychoeducation As the name implies, psychoeducation has both educational and psychotherapeutic components. Originally, these interventions were created by mental health professionals in response to EE research, with the intention of enhancing family members’ ability to cope with their relatives’ disabilities, and thereby to lower their EE behavior (Mueser & Gingerich, 2006). This change in behavior was expected to reduce relapse. Psychoeducation has two primary objectives: to provide information regarding a relative’s disorder and its treatment, and to teach family members strategies to cope with the relative’s illness, including problem-­solving skills, coping and communication skills, and crisis management. These services are often provided in structured programs that last at least 9 months but may go as long as 5 years; that are often diagnosis-­specific; and that focus primarily on outcomes for the relatives with psychiatric disabilities, and less so on the well-being of family members (Solomon, 1996, 2000; Dixon et al., 2001). Psychoeducational interventions may be delivered to an individual family member, to a family unit, or to multiple families. A family’s relative with psychiatric disability is often included in all, or part, of the intervention. Services may be provided in a family’s own home, in a clinic setting, or some other location. For the most part, these interventions have focused on families of relatives with schizophrenia (Mueser & Gingerich, 2006), but they have also been designed for families of relatives with bipolar disorders, major depression, and PTSD (McFarlane, Dixon, Lukens, & Lucksted, 2003; Miklowitz, 2008). Current versions of psychoeducational interventions assume a strengths-based

TABLE 12.1.  Types of Services for Families Psychoeducation: Review of facts and skills to help family members and relatives with mental illness manage disabilities. Family consultation and support: Provision of advice, information, and support to family members to help weather the challenges of serious mental illness. Consultation may be provided on an individual or group basis; support is often provided in multiple-family groups. Planned lifetime assistance: Practical assistance, often focused on independent living goals of a person with disabilities as parents move toward retirement. Respite: Temporary relief for family caregivers of relatives with serious mental illness.

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perspective, viewing family members as competent therapeutic agents. They promote collaborative relationships between family members and practitioners (Lam, 1991). Three prominent examples of these interventions are behavioral family management (Falloon, Boyd, & McGill, 1984), family psychoeducation (Anderson, Reiss, & Hogarty, 1986), and multifamily groups (McFarlane, 2002). These interventions have been determined to be effective in at least two randomized studies.

• Falloon et al.’s (1984) behavioral family management takes a sequential approach: It starts with assessment; then moves to intervention strategies, including communication and problem-­solving training; and ends with ongoing review. As its name indicates, the intervention encompasses illness management strategies that employ behavior modification techniques. Behavioral analyses of the strengths and needs of the family and of each family member are conducted. The goal is to help all family members to function at their best given the constraints of the relative with psychiatric disabilities. • Anderson et al.’s (1986) intervention is based on a family systems orientation and starts by establishing an alliance with the family at the point of the person’s admission to the hospital. Once a relationship is formed, the provider serves as a representative with the hospital system. The second phase is a daylong survival skills workshop, which provides information about the disorder to a group of families. This format helps to reduce isolation and stigma. Upon the relative’s discharge from the hospital, individual family sessions begin, and contacts are made with the family and the relative during regularly scheduled sessions, phone consultations, and crisis contacts. The intervention is openended and contingent on needs and negotiations among family members and the relative with the psychiatric disability. Subsequent sessions apply information from the survival skills workshop to deal with the ongoing process of social adjustment and employment for the relative. • McFarlane’s (2002) intervention can be considered a second-­generation treatment, because it combines aspects of two family psychoeducation interventions: behavioral family management and multiple-­family approaches. The first stage is for practitioners to meet individually with a family to build an alliance. Second is a multifamily workshop, as in Anderson et al.’s (1986) model. Unlike Anderson et al.’s intervention, however, this model employs problem-­solving groups attended by both family members and relatives with psychiatric disabilities. McFarlane (2002) proposes a long-term intervention with a closed-­format membership. Thus, families receive support and problem-­solving suggestions from other families; consequently, this intervention has the advantage of a social support group as well. For the first year, the multifamily group focuses on social stabilization of the relatives with psychiatric disabilities; in the second year, the group moves to emphasize social and vocational rehabilitation for the relatives. Peer-­Provided/Family-Based Education Some types of family-based education differ from psychoeducation per se, in that they have been developed by families themselves to respond to their needs for practical advice and information. Families may feel that they do not need treatment, but hands-on assistance in meeting the myriad problems that emerge from their loved ones’ psychiatric disabilities (Hatfield, 1994a). Many of these programs began as “grassroot” efforts by members of what was then called the National Alliance for the Mentally Ill (now the National Alliance on Mental Illness, or NAMI) (Lefley, 1996). Goals were to reduce

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families’ stress and burden, to increase their coping skills, and to improve their quality of life. These educational interventions continue to emphasize competencies of families rather than deficits (Solomon, 1996; Toohey, Muralidharan, Medoff, Lucksted, & Dixon, 2016). Families are taught skills to cope with the existential problems resulting from their relatives’ illness, to manage relapse should it occur (Lefley, 1996). The underlying conceptual basis for family education emerged from findings regarding stress, coping, and adaptation (Hatfield, 1987, 1990; Marsh, 1992). The coping and adaptation framework focuses on the strengths, resources, and adaptive capacities that all families have. Family members learn to cope with their relatives’ behaviors by modifying their own behaviors, cognitively neutralizing the meaning of the experiences, and managing the emotional consequences of the problems that arise from the relatives’ disorders (Pearlin & Schooler, 1978). Adaptive coping is a family member’s use of behavioral and cognitive strategies to reduce stress and burden resulting from a relative’s illness. In addition, these interventions employ social support groups, which help to buffer stress through emotional support, practical advice, and information sharing. Particular programs may have different conceptualizations. For example, NAMI’s Family-to-­Family (FTF) education program employs a trauma model of recovery—­viewing mental illness in a family as a traumatic event from which all family members need to recover, and stressing the need for all members to learn to take care of themselves (Burland, 1998). Programs like FTF are typically delivered in community settings, including churches, schools, or other locations that are convenient and accessible to family members (Solomon, 2000). By being independent of the mental health system, participants avoid the stigma of attending a mental health agency. Family members who have had negative experiences with mental health practitioners are more likely to attend these interventions when they are independent of the mental health system. These programs are frequently led by family members, although they sometimes have professionals speak on a specific topic, such as new medications (Battaglino, 1987). These kinds of programs may also be facilitated by an individual who has the dual role of a professional and a family member, or cofacilitated by a professional and a trained family member. Most educational groups have an open admission policy to anyone who has a relative with a psychiatric disorder,

PERSONAL EXAMPLE What Happens When Goals Differ? Often family members do not agree about goals. Jeremy Washington is a 28-year-old Black man living with disabilities resulting from a 10-year struggle with schizophrenia. He currently lives in a three-bedroom apartment with his father, Luther. Jeremy has a new part-time job at a local insurance company, working between 3 and 9 p.m. each day. When he gets home, he likes to relax by listening to the radio and having a couple of beers. Luther gets up early each morning to get to his job as a bus driver. He is bothered by Jeremy’s loud music at night. He also worries that Jeremy’s drinking will make his illness worse. Finally, Luther is planning on retiring in a couple of years and wants Jeremy to think about moving into his own place. Jeremy feels that work is still a major stressor and does not want to move out. The rehabilitation goal is helping Jeremy adjust to his new job. But this is not enough for Luther; he wants to also focus on Jeremy moving out.

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regardless of whether the relative is receiving treatment. This is in contrast to psychoeducation interventions, which require the relative with a psychiatric disability to be in treatment. Additionally, the relative with the psychiatric disorder does not attend along with family members. Being sponsored by NAMI, FTF is widely offered throughout the United States, Puerto Rico, and Canada. This is a “train-the-­trainer” model, so the program becomes self-­sustaining (Dixon, 1999). There is no cost to participants (Dixon et al., 2004). Since many of these programs were designed with parents in mind, other family members do not always feel that these interventions are relevant to their needs. There has been development of programs specifically for spouses/partners, children, and siblings, as well as for families of relatives with disorders other than schizophrenia (e.g., bipolar disorders and BPD). For example, groups for spouses/partners focus on their concerns rather than those of parents, such as dealing with intimacy issues and partner role responsibilities (e.g., Mannion, Mueser, & Solomon, 1994).

Research on Psychoeducational Interventions Since 1995, there have been at least 18 reviews of psychoeducational interventions, at least eight of which have been systematic reviews or meta-­analyses (Cuijpers, 1999; Bevan Jones et al., 2018; Brady, Kangas, & McGill, 2017; Pharoah, Rathbone, Mari, & Streiner, 2004; Pilling et al., 2002; Pitschel-Walz, Leucht, Bauml, Kissling, & Engel, 2001; Sin, Gillard, Spain, Cornelius, Chen, & Henderson, 2017; Wittenborn et al., 2022). The reviews have consistently concluded that these interventions produce lower rates of relapse, with some indication that gains are maintained for at least 2 years. Furthermore, reviews indicate that family psychoeducation has positive impacts on family caregivers, improving caregiving experiences and reducing caregiving burden and EE. Most of the early reviews were of studies that focused on relatives of persons with schizophrenia or schizophrenia spectrum disorders; however, several of the more recent reviews have examined studies focused on relatives of persons with depression or bipolar disorder (Bevan Jones et al., 2018; Brady et al., 2017; Wittenborn et al., 2022). In the majority of the studies included in the reviews, the family psychoeducation intervention was combined with psychopharmacological treatment, and frequently with case management. This factor has resulted in some reviewers’ concluding that family interventions increase medication use, which subsequently reduces relapse. Earlier studies suggested that beneficial effects seem to depend on the duration of an intervention’s being at least 9 months (Chien, Thompson, & Norman, 2008; Dixon & Lehman, 1995; Lam, 1991; Penn & Mueser, 1996). A review by McFarlane (2016) suggested that programs lasting longer than 3 months had more robust effects, and those lasting at least 6 months show the most consistent efficacy. Some reviewers have noted that employing an insight-­oriented perspective in family interventions may actually result in negative outcomes (McFarlane, 2016; Penn & Mueser, 1996; Mueser & Glynn, 1999). Most reviews have found no particular advantage for one approach to psychoeducation over another (Baucom, Meuser, Shoham, Dauito, & Stickle, 1998). There is some evidence that, at a minimum, an intervention needs to include education, family support, psychopharmacology, and case management for the relatives with psychiatric disabilities. A few studies assessed whether a multifamily or single-­family format was more effective, but there was no clear conclusion on this issue (McFarlane, 2016) Also, cautions were raised about paying attention to cultural issues (Dixon, Adams, & Lucksted, 2000; Penn & Mueser, 1996).

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Several systematic reviews have evaluated psychoeducation outcomes related to family functioning and burden. Findings vary but suggest improvement in psychosocial outcomes both for families and for the relatives with psychiatric disabilities, such as family burden, family functioning, family stress, and relatives’ social role functioning associated with psychoeducation programs (Brady et al., 2017; Sin et al., 2017). Cuijpers (1999) conducted a review of only burden and its component parts as outcomes of family interventions, and concluded that family interventions had an effect on these outcomes; stronger effects on burden required at least 12 sessions. While most of the research on family psycho-­education has focused on in person interventions, there have been several studies of web-based programs. Sin and colleagues (2022) conducted a randomized controlled trial of an entirely web-based intervention called Carers for People with Psychosis e-support (COPe-support). Prior to the RCT, the intervention was codeveloped via a participatory research process and tested for usability. The 20-week multimedia interactive intervention provided psychoeducation and network support with peers and professionals; 407 study participants were randomized to COPe-support or a passive online information resource. Results did not find differences in family member well-being between the two groups at 20- or 40-week follow-up, perhaps due to low engagement with the intervention (only 106 of the 204 participants in the COPe-­support intervention logged in two or more times a week). Rotondi et al (2010) conducted a RCT study of SOAR (schizophrenia online access to resources), a web-based psychoeducation program for people with schizophrenia and their caregivers. The intervention comprised an in-­person, 4-hour psychoeducation skills workshop, professionally facilitated online therapy forums (one for people with schizophrenia, one for caregivers, and one combined), capability to ask the project team questions, frequently asked questions, and a library of resources and community activities. Among those assigned to the SOAR intervention, persons with schizophrenia spent an average of 46 hours on the website; caregivers averaged 14 hours. Positive effects were noted for a limited set of outcomes. Compared to a usual care group, people with schizophrenia in the SOAR group had greater reductions in positive symptoms and increased knowledge about diagnosis. Caregivers in the SOAR condition showed improvements in knowledge about prognosis relative to the control condition.

Research on Family-Based Education There have been at least eight randomized trials and multiple quasi-­experimental studies of family-based education, with many of the studies examining family-led education (Abramowitz & Coursey, 1989; Dixon et al., 2004, 2011; Haselden et al., 2019; Pickett-­Schenk, Steigman, Bennett, & Lippincott, 2005; Posner, Wilson, Kral, Lander, & Mcllwraith, 1992; Reilly, Rohrbaugh, & Lackner, 1988; Smith & Birchwood, 1987; Solomon, Draine, Mannion, & Meisel, 1996a, 1996b, 1997; Toohey et al., 2016). In contrast to the findings for psychoeducation, there is little evidence that these interventions affect relapse or rehospitalization rates. All of the studies found positive outcomes for family members, but most of them employed different outcome measures, resulting in little consistency of findings. Family members who participated in these trials were found to gain knowledge about their relatives’ disorders, greater understanding of and satisfaction with mental health services, and more satisfaction with the mental health treatment system. These studies also reported reductions in burden; improved self-care; less distress, fewer depression symptoms, and less anxiety; improved relationships with the relatives with psychiatric disabilities; improved coping behaviors; and an increased

12. Family 225 

sense of self-­efficacy in dealing with the relatives’ illness. Solomon and colleagues (1996a, 1996b) did find a secondary benefit for the relatives with psychiatric disabilities: Their attitudes toward medication use improved. Several of the previously mentioned studies examined NAMI’s FTF program, which is the most widely disseminated and studied family led education intervention (Dixon et al., 2004, 2011; Mercado et al., 2016; Schiffman et al., 2015; Smith et al., 2014; Toohey et al., 2016). Dixon and colleagues (2011) randomized 318 participants recruited from five Maryland NAMI affiliates to FTF or a wait-list control. At 3-month follow-up, FTF participants had significant improvements in problem-­focused coping, increased acceptance of their family member’s disability, reduced distressed, and improved problem solving. Furthermore, FTF participants showed increases in positive appraisals but no significant decreases in negative appraisals (Toohey et al., 2016). Family members of younger persons (ages 8–18) with psychiatric disabilities seemed to benefit the most in several domains, reporting more pronounced improvements in depressive symptoms, and negative perceptions and experiences than participants with adult (19 or older) family members with psychiatric disabilities (Schiffman et al., 2015). Subsequent quasi-­experimental research in the New York City metro area provides support for the positive impacts of FTF on family empowerment, family functioning, engagement in self-care, and emotional acceptance (Mercado et al., 2016). A six-­session modified version of FTF, NAMI Homefront, has also shown positive impacts for families of military service members and veterans (Haselden et al., 2019).

Family Consultation and Support Family Consultation Family consultation, sometimes called supportive family counseling or family systems consultation, is an individual approach in which a consultant collaboratively provides advice, support, and information that may be needed by a family (Mannion, 2000; Bernheim & Lehman, 1985; Bernheim, 1982). This approach is often adapted for a group, in which several family members are counseled by a professional and a family member; families share their problems and strategies for solving them (Mannion, Draine, Solomon, & Meisel, 1997). Frequently, a relative with a psychiatric disability is not included in the consultation meetings. The exclusion of the relative from some parts of this intervention enables the family members to be free to express negative emotions and concerns that might upset their relative if they were present. This intervention is especially attractive to families whose relatives with psychiatric disabilities refuse or resist mental health services (Solomon, Marshall, Mannion, & Farmer, 2002; Solomon, 2000). Besides helping a family to learn new skills to cope with a relative’s disorder, the consultant evaluates use of the skills by each family member, provides information about available resources in the community, and, in a few cases, accompanies the family to mental health services. The consultant generally provides educational materials that are relevant to the family’s needs. Aspects of the intervention may be provided over the phone, especially once a relationship has been established. This makes it easy for family members to contact the consultant as questions arise. Having the consultant available over the long term, so that family members can obtain advice as situations with the relative change, is especially appealing (Ascher-­Svanum, Lafuze, Barrickman, Van Dusen, & Fompa-Loy, 1997; Budd & Hughes, 1997). Research on this intervention is limited. One arm of a randomized study of family

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education assessed family consultation/support (Solomon et al., 1996a, 1996b, 1997). This study determined that participants in this intervention improved their sense of self-­ efficacy in coping with a relative’s disorder, and that these gains were maintained for a period of 6 months.

Family Support and Advocacy Groups Family support and advocacy groups provide emotional support, empathy, information, and opportunities to share feelings with others who have the experience of a relative with a psychiatric disability. These groups are usually peer-led, open-ended (in terms of both duration and new entrants) and offered in an environment that is nonjudgmental and free of stigma. Support is provided through group meetings in which participants network with members of other families who have common concerns (Solomon, 1998). Participants may learn from peers about practical means of coping with their relatives’ illness. They may also gain self-­esteem through the process of assisting others (Marsh, 1998). Members share solutions to common problems, engage in role modeling, and positively reinforce each other (Lefley, 2003). These support groups have some of the elements of family-based education, but they are not quite as structured or formalized. Like family-based education, these groups generally meet in accessible community locations. These groups are facilitated by family members and usually meet for an hour or two, every couple of weeks. Often these groups sponsor guest speakers on topics of concern to the membership (Battaglino, 1987). Many of these support groups are sponsored by NAMI, although support groups for families have been active since the 1960s. In some cases, these groups have developed service programs for persons with psychiatric disabilities to fill the gaps in the community service system (Lefley, 2003). Engagement in these advocacy activities can be therapeutic for family members. However, families’ needs for support, assistance, and information must be met before they are interested in engaging in advocacy work. Support groups that have been meeting for a long period of time often focus more on advocacy than on providing support and information. This is problematic for new members wishing to join established groups. As a consequence, some groups address the needs of new entrants by having them meet individually with members who serve as mentors.

Research on Family Support Groups There has been one meta-­analysis of family support groups. Wang, Chen, and Deng (2021) examined five RCTs of family-led peer support groups. Results were mixed. There were no significant differences between family-led peer support families and control group families in family functioning (Chien, Bressington, & Chan, 2018; Chien & Thompson, 2013; Chien et al., 2008; Dixon et al., 2011) or family burden (Chien et al., 2008, 2018; Dixon et al., 2011). However, compared to control families, family-led peer support group families used more formal community services (Chien & Chan, 2004; Chien et al., 2008, 2018; Chien & Thompson, 2013), and their family members with psychotic disorder had higher levels of psychosocial functioning, fewer psychotic symptoms, and few psychiatric hospitalizations (Chien & Chan, 2004; Chien et al., 2018; Chien & Thompson, 2013). Less rigorous research has indicated that support group participation results in a number of positive outcomes. These include improved coping skills, increased knowledge,

12. Family 227 

increased perceptions of social supports, less subjective burden, and lower psychological distress (Biegel & Yamatani, 1986; Citron, Solomon, & Draine, 1999; Heller, Roccoforte, Hsieh, Cook, & Pickett, 1997; Norton, Wandersman, & Goldman, 1993; Mannion, Meisel, Solomon, & Draine, 1996). Heller and colleagues (1997) found that longer participation results in greater benefits. Those who typically participate in these groups tend to be middle-class, White, highly educated females (Mannion et al., 1996). Therefore, the results are biased by the characteristics of those who join and those who stay in these groups.

Planned Lifetime Assistance Programs Many families have concerns about what will eventually happen to their relatives with psychiatric disabilities. These concerns are particularly acute for older parents acting as caregivers, who worry about what will become of their children when the parents die or become disabled (Sivakumar, Jain, Philip, Glynn, & Chandra, 2022). Small nonprofit agencies have been developed by families to handle special-needs trusts. These programs offer estate plans or living trusts for persons with disabilities, which provide funds for goods and services that are not otherwise covered under programs like Medicaid or SSI (e.g., dental care and education). They also prevent persons with psychiatric disabilities from putting their benefits in jeopardy, because some of these benefits, such as SSI, are needs-based programs that do not allow individuals to have more than a specified amount of money (Tarutis & Boyd, 2001). These trusts can be established even with relatively limited funds. For example, the Planned Lifetime Assistance Network of Pennsylvania requires $5,000 to establish a trust. The Pennsylvania network also serves as a  representative payee for persons with psychiatric disabilities (regardless of whether they have trusts) as well as other disabilities, and provides care coordination services. The network will assist in paying bills for persons with disabilities, should this be desired. There has been no evaluation of the effectiveness of such interventions. But there has been research on when and why families engage in future planning, including planning for residential placement (Hatfield & Lefley, 2000; Kaufman, 1998; Smith, 2004). Hatfield and Lefley (2000) found that caregivers’ personal issues, such as knowledge regarding planning, as well as characteristics of their relatives with disabilities and of the service system, affected planning. Subjective burden and perceptions of aging often instigate planning for placement, whereas being overwhelmed with daily hassles may prevent families from taking steps toward residential placement (Rimmerman & Keren, 1995; Smith, 2004). Psychiatric rehabilitation providers can play a key role in assisting families in addressing future care planning needs, and as Sivakumar and colleagues (2022) suggest, this should be a integral and routine part of treatment planning.

Respite Care Respite offers concrete temporary relief to family caregivers (SAMHSA, 2003). This service may be provided by an individual who comes into the home to assist temporarily with the relative with a psychiatric disability while the family caregiver goes shopping or visiting. Other programs will take the relative on an outing to relieve the family members for a short period of time while the family goes on vacation. These types of services offer benefits to both the family members and the relative with a psychiatric disability.

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PEOPLE WITH PSYCHIATRIC DISABILITIES AS PARENTS More than two-­thirds of people with psychiatric disabilities become parents (Kaplan, Brusilovskiy, O’Shea, & Salzer, 2019). While, on average, women with psychiatric disabilities have the same number of pregnancies as other women, there is evidence that more of those pregnancies are unplanned (Hall, Steinberg, Cwiak, Allen, & Marcus, 2015). Despite this, there has been only limited attention to family planning needs of women with psychiatric disabilities. Existing research indicates that women with psychiatric disabilities face multiple barriers in access to reproductive health care, are vulnerable to coercion and contraception interference from partners, and are rarely asked about reproductive health issues by their psychiatric providers (Lawley et al., 2022). Early research on persons with psychiatric disabilities as parents focused primarily on risk and the impact of their disabilities on the children. This research suggested that psychiatric disabilities are often associated with impaired parenting skills and disrupted caregiving (Goodman & Brumley, 1990; Wan, Moulton, & Abel, 2008; Mowbray, Oyserman, & Bybee, 2000). A recent prospective study conducted in Denmark (Ranning, Munk Laursen, Thorup, Hjorthøj, & Nordentoft, 2015) found that parental diagnosis of serious mental illness was a strong risk factor for out-of-home placement during childhood, with maternal diagnosis of schizophrenia carrying the most risk at 40% (paternal diagnosis of schizophrenia was associated with a 20% risk). In the United States, parents with serious mental illness are eight times more likely to have contact with child protective services and 26 times more likely to have children removed from their home than parents without mental illness (Kaplan et al., 2019). Risk factors for child protective services contact among people with psychiatric disabilities include being nonWhite, having less education, lower social support, trauma history, and substance use (Ostrow et al., 2021). Parenthood is a central source of meaning to mothers and fathers with psychiatric disabilities (Boursnell, 2007; Ende et al., 2016), and critical to recovery for many (Reupert, Price-­Robertson, & Maybery, 2017). In recent decades, research has moved beyond a singular focus on risks and deficits with increasing attention to parenting experiences and interventions to support families where a parent has a mental illness (van der Ende, Busschbach, Nicholson, Koreevar, & van Weeghel, 2016; Mattejat & Remschmidt, 2008; Reupert et al., 2017). A few studies have examined the role of fathers with psychiatric disabilities (Nicholson & Henry, 2003; Price-­Robertson, 2015; Reupert & Maybery, 2009), and suggest that while many may not live full-time with their children, they value their parental role. Research assessing the experience of mothers with psychiatric disabilities has found that many of the issues are common to all parents, particularly low-­income single mothers. However, some issues are specific to mothers with psychiatric disabilities. Some mothers struggle with the combined stressors of raising their children and coping with their psychiatric illness, frequently with minimal supports (Harries et al., 2023; Nicholson, Sweeney, & Geller, 1998; Oyserman et al., 1994; Mowbray et al., 2000). A particular stressor for mothers with psychiatric disabilities is the possible loss of custody of their children (Harries, Smith, Gregg, & Wittkowski, 2023; Nicholson, Sweeney, & Geller, 1998; Park, Solomon, & Mandel, 2006; Sands, Koppelman, & Solomon, 2004); which can lead to avoiding services or seeking support in attempt to protect custody of their children (Harries et al., 2023). In a meta-­synthesis of qualitative research on parenting with serious mental illness, Harries and colleagues (2023) noted themes related to stigma and shame; parents wanting to shield their children from their mental health difficulties in ways that sometimes

12. Family 229 

created distance in the relationship; fear of loss and separation; struggles to balance the need to take care of self and the needs of children; management of boundaries and renegotiation of roles following periods of absence or acute illness; and the need for compassionate, wraparound support. The authors’ recommendations include providing parent psychoeducation that addresses guilt and stigma, and promotes integration with support systems and peer networks to address parental isolation. They also recommended that health care providers recognize the centrality of parenting in the lives of people with psychiatric disabilities and be sensitive to parental concerns about social service involvement. There are limited services for assisting parents with psychiatric disabilities. There are, however, some specialized programs for parents in this population, including ones for pregnant women. For example, Thresholds, a psychiatric rehabilitation agency in Chicago (see the box at the start of Chapter 3), has long-­operated a comprehensive program that mothers attend 3–5 days a week, followed by monthly home visits. In addition to clinical and rehabilitation services, this program includes parenthood-­specific education and support (e.g., training in stress and household management), as well as education in child development. Nursery and child care settings are also part of this program, with child care workers modeling caregiving activities and conducting periodic assessments of each child’s development (Oyserman, Mowbray, & Zemencuk, 1994). Nicholson and Blanch (1994) have noted that effective rehabilitation for parental roles requires a comprehensive approach, beginning with assessing a mother’s needs, strengths, and capabilities, then making arrangements for appropriate services. This rehabilitation approach will certainly enhance the capabilities of mothers with psychiatric disabilities and contribute to positive outcomes for them and their children. A pilot study of an integrated treatment approach to parent training showed promise: This integrated family treatment offered home-based services including parent skills training, modeling, and coaching, as well as linkages to various environmental supports (Brunette, Richardson, White, Bemis, & Eelkema, 2004b). A recent systematic review of recovery-­oriented parenting interventions identified three interventions: Family Options, Let’s Talk about Children, and Parenting with Success and Satisfaction (PARSS) (Reupert, Price-­Robertson, & Maybery, 2017). Family Options is a strengths-based program focused on recovery and resilience (Nicholson, Albert, Gershenson, Williams, & Biebel, 2009). Over a period of 12–18 months, families meet with a Family Coach, develop a care plan, and work together in the home with at least weekly contact. Coaches provide emotional support, skills practice, education, feedback, and connections to resources. Let’s Talk about Children, a brief intervention developed in Finland, focuses on engaging parents with psychiatric disabilities in the support of their children. It involves two to three structured conversations with parents about their children’s strengths, vulnerabilities, and need for support (Allchin & Solantaus, 2022). PARSS, a recovery-based, guided self-help intervention focused on enhancing self-­ regulation, includes structured strategies to reach out and support parents (van der Ende, van Busschbach, Nicholson, Korevaar & ven Weeghel, 2014). The intervention includes parenting workbooks completed with the assistance of a mental health practitioner in weekly sessions over the course of a year. In their assessment of these programs, Reupert and colleagues (2017) concluded that evidence for the effectiveness of PARSS, while limited, suggests positive impacts on parent quality of life. The evidence for Family Options was stronger, suggesting improvements in parent well-being and socioeconomic factors. The evidence for the Let’s Talk intervention was the strongest, indicating improvements in parent well-being, parenting beliefs and practices, family relationships, and child wellbeing.

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Online parenting interventions have also been developed and studied. Kaplan, Solomon, Salzer, and Brusilovskiy (2014) conducted an RCT of an intervention that combined an online parenting course and a moderated peer support listserv. The cognitive-­ behavioral therapy–based curriculum was designed to support mothers with psychiatric disabilities and comprised twelve 30-minute online sessions covering a range of parenting topics, such as child development, parenting techniques, stress reduction, positive parenting, and so forth. Mothers were asked to complete one session per week, which included a quiz and homework assignment to practice skills and discuss on the listserv. Compared to the control condition, at the end of the intervention, mothers participating in the online intervention experienced enhanced parenting and coping skills, and decreased stress. Improvements in parenting satisfaction and reductions in parenting stress were maintained at 18-month follow-up (O’Shea, Kaplan, Solomon, & Salzer, 2019).

SUMMARY AND CONCLUSIONS Beliefs regarding families of persons with psychiatric disabilities have clearly changed over the last 50 years. Family members are no longer viewed as toxic agents, but rather as integral members of the rehabilitation team and as ongoing support systems for their relatives with psychiatric disabilities. Their welfare is increasingly seen as essential to their relatives’ recovery process. When a family’s needs for information, education, support, and coping skills are met, benefits accrue to the entire family, including the relative with mental illness. Families whose needs are met through one or more family interventions have a better quality of life for themselves and their relatives with psychiatric disabilities. Over the years, there has been increasing recognition of the need to develop more specialized interventions for particular family members, for families of persons with designated diagnoses, and for families and relatives with other specific characteristics. There is also increasing recognition that many persons with psychiatric disabilities are not only children and siblings but also parents. The parental role requires new interventions to support people with psychiatric disabilities and their children. Although some of the interventions described in this chapter clearly incur additional costs for the mental health system, they also have the potential for financial savings through cost offsets resulting from possible reductions in costly mental health service utilization—­ particularly reductions in hospitalization and emergency room visits. With the range of family interventions now available, rehabilitation practitioners do not necessarily have to provide these interventions themselves, but they do need to be competent and comfortable in working with families, and knowledgeable about community resources to facilitate families’ access to these interventions. They also need to have an understanding and an appreciation of the family experience, and to realize that caregiving can be a 24-hour, 7-day, 52-week job.

C H A P T E R 13

Psychosis and Cognitive Challenges

S

ince researchers and clinicians fi rst described schizophrenia, deficits in cognitive processes have been considered central to the illness. Kraepelin (1919/1971) believed that cognitive deficits led to “annihilation of intrapsychic coordination.” Bleuler (1911/1950) described the nature of deficient processes, attributing poor cognitive functioning to the loss of associations among thoughts. Research on and development of cognitive interventions for people with schizophrenia, and other disabling psychiatric disorders, have largely represented two independent traditions. First, an extensive literature on cognitive rehabilitation has developed over the past five decades, seeking to improve information processing, so that people with psychiatric disabilities are better able to perceive and comprehend their world (Ayşegül, Özdel, & Türkçapar; 2021; Cella, Preti, Edwards, Dow, & Wykes, 2017; Cella, Price, Corboy, Onwumere, Shergill, & Preti, 2020; Kambeitz-Ilankovic et al., 2019; Lejeune, Northrop, & Kurtz, 2021; Van Duin et al., 2019; Vita et al., 2021; Zheng et al., 2022). This body of work has reflected laboratory-based approaches to cognition, focusing on the improvement of discrete processes such as attention, memory, and decision making. The fi rst portion of this chapter reviews processing deficits and intervention strategies that remediate these deficits. Second, researchers have extrapolated the principles and practices of cognitive therapy to some of the symptoms and dysfunctions of schizophrenia and other disabling psychiatric disorders. Consistent with the zeitgeist in cognitive therapy, researchers in this arena have crafted interventions that help people think about, and act upon, their belief systems. The second portion of this chapter explains these kinds of deficits, together with approaches that help people with psychiatric disabilities address them. Cognitive rehabilitation and cognitive therapy are fundamentally adjunctive services. Rather than being used as stand-alone rehabilitation strategies, they are best appended to other rehabilitation programs. Hence, job coaches might use these approaches for employees with cognitive deficits that are interfering with work. Care coordinators might adopt cognitive therapy for persons whose delusions interfere with successful living at home. Practitioners working with individuals who are experiencing prodromal symptoms of schizophrenia or providing services within fi rst-episode psychosis programs might offer cognitive rehabilitation as a strategy for early intervention and prevention. 231

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UNDERSTANDING COGNITIVE PROCESSING DEFICITS Cognitive processing refers to the interconnectedness of the components of thought (e.g., attention, memory, and executive functioning) that are necessary for people to perceive, understand, and act upon their world. There was a time when the cognitive processing deficits manifested by people with psychotic disorders were thought to be derivative (i.e., it was believed that they emerged from the more apparent symptoms of the disorder or medication effects); however, researchers have since convincingly shown that many of the processing deficits are present before the onset of the disorder and remain after most other symptoms have remitted (Tripathi, Kar, & Shukla, 2018). Hence these deficits are important treatment targets in their own right. Given this assertion, questions focus on the relevance of cognitive processing deficits for psychiatric disabilities and rehabilitation. Several issues are addressed here to answer this question. First, a profile of deficit areas relevant to cognition is provided. This includes describing the Measurement and Treatment Research to Improve Cognition in Schizophrenia (MATRICS). Next comes a review of evidence that impairments in specific cognitive processes interfere with social functions, and that impaired social functions in turn undermine achievement of goals in the major life domains. Social cognition is reviewed as a special circumstance bridging social and cognitive dysfunctions. This section then provides a summary of research on the impact of treatment strategies on cognitive impairments and psychiatric disabilities. This summary includes a brief review of medication effects (Chapter 9 reviews medication issues more thoroughly) and a more comprehensive discussion of rehabilitation approaches. Much of the research reviewed in this chapter was completed on people with schizophrenia; hence, research on schizophrenia is used as the prototype for understanding general principles and practices related to cognitive rehabilitation. The nature of cognitive deficits and corresponding rehabilitation strategies should parallel these principles in other diagnoses.

What Are Relevant Processing Deficits? Literature reviews suggest that about 80% of people with schizophrenia show abnormal functioning on processing measures (McCleery & Nuechterlein, 2019). Findings from a meta-­analysis of more than 200 studies looking at cognitive processes in people with schizophrenia versus controls without mental illness found moderate to large effect sizes, with the largest deficits being in memory and attention (Heinrichs & Zakzanis, 1998). A more recent meta-­analysis of 100 nonoverlapping studies demonstrates that these findings have remained consistent over time and across cultural and geographical variations (Schaefer, Giangrande, Weinberger, & Dickinson, 2013). Although research clearly shows that people with serious mental illness have significant deficits in cognitive processes, the ways in which these processes are defined and measured differ significantly across studies. An information processing paradigm is frequently used for understanding these diverse deficits (Corrigan, 1996).

Deficits as Information Processing Impairments The fundamental assumption behind information processing paradigms is that the macro-level aspects of sensory input can be divided into discrete information bytes (e.g., visual stimuli can be described in terms of color, contrast, depth, location, and relative

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PERSONAL EXAMPLE Keiko Fukuoka Couldn’t Remember What Was Said Keiko Fukuoka was severely distressed by “voices from the devil” when she was first admitted for a medication evaluation. Her speech was marked by loose associations so that people had difficulty understanding her. These symptoms remitted almost entirely after 6 weeks of atypical antipsychotic medication. Even though she continued on medication, her attention was poor. This did not seem to result from being sedated by her medication. When other people were talking with Keiko, she seemed wide awake. However, she had great difficulty following the content of a medication management skills class. Even when the peer instructor repeated the information, she could not remember it. As a result, she was having difficulty taking her medication as prescribed in her new apartment. Keiko was also having trouble with her supervisor at work, because she was forgetting phone messages and misplacing files.

size), and that the macro-level experience of human cognition can be divided into composite functions (e.g., attention, memory, and executive functions) that interact in some meaningful order (e.g., serially, in parallel distribution) (Corrigan & Stephenson, 1994). Hence, the process of knowing can be understood by studying the various components of information processing individually and together. From a methodological standpoint, breaking down information and cognition into theoretical elements greatly enhances the study of these phenomena. The range of research questions increases geometrically with the number of defined elements. Similarly, methodological precision is enhanced as the questions of cognitive research narrow from “How does a person know?” to “How does a person attend, recall, recognize, or react?” An information processing paradigm has advantages for understanding cognitive functioning (Ingram & Kendall, 1986). Findings about specific cognitive functions seem to coincide with biological research from neuroscience, which suggests putative associations between information processing and neurological structures. Moreover, measurement strategies used in defining the components of information processing have been adapted for assessment of cognitive deficits. In turn, variations of these assessment instruments have been used as rehabilitative tools.

Stage Theories/Bottom-Up Models The first information processing theories were bottom-up, serial-­search models of cognition (Sternberg, 1966, 1967), like the one illustrated in Figure 13.1. According to this perspective, information processing is serial; it manipulates information in a stepwise fashion, one byte at a time. Functions include information intake and encoding; storage and retrieval; transformation and conceptualization; and response selection and action. These models are bottom-up because processing is initiated by attention to incoming information. Let’s take a closer look at these functions, beginning with attention. As represented in Figure 13.1, the relative infinity of information in a person’s environment is significantly reduced by an attentional filter. Broadbent (1958, 1977) considered this filter a selective process, such that individuals focus attention on only a few of several channels of incoming information. For example, participants in a study may

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FIGURE 13.1.  Bottom-up model of information processing.

attend to a complex auditory message while ignoring the written message on a computer screen. Information from the visual channel often dominates attentional processing (Posner, Nissen, & Klein, 1976). Attended information then becomes a figural “snapshot,” which is available in iconic memory for a very short time (Averbach & Coriell, 1961; Sperling, 1960). Most of this information is lost as the icon decays or is replaced by subsequent incoming information, such that only a few bytes of original information remain. This information is encoded vis-à-vis extant memory traces, so that information has meaning beyond its stimulus qualities (e.g., a particular conglomeration of lines and curves, shades and hues, is perceived to be the image of a human being). The amount of information that can be held in short-term memory is relatively limited and decays quickly (Miller, 1956). Short-term memory, often called working memory, refers to an individual’s ability to report what is currently on their mind. Depending on the individual’s previous experience with incoming information, their mental set, and environmental conditions, some information in short-term memory will be consolidated into long-term memory (Atkinson & Shiffrin, 1968). Investigators believe that

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information in long-term memory is sorted into categories—memory structures that are defined by unique, descriptive attributes. Information in long-term memory may be retrieved in the future. Two forms of retrieval have been described: recognition and recall (Mandler, 1972; Rabinowitz, Mandler, & Patterson, 1977). In recognition, individuals may compare incoming information to categories in the memory store, thereby recognizing the data: “Oh, I know you; you’re Mr. Jones.” Alternatively, the executive mechanism of an individual may initiate a more active and cognitively demanding memory search to recall a perceptual instance: “Let’s see. In the past, I’ve seen Mr. Jones and Ms. Smith at the street corner.” The recall process also suggests the manner in which motoric responses are generated. A response may be elicited in reaction to an external stimulus (comparison function) or to an internal decision (executive function). The generated response may come from several motoric actions arranged hierarchically in the long-term store (Broen & Storms, 1966; Hull, 1952). Positions in the response hierarchy vary in arousal level and are determined on the basis of past learning history and present situational demands. In highly familiar situations, arousal of certain reactions exceeds most others, and individuals tend to respond automatically—that is, with little conscious consideration of response alternatives and with little cognitive effort (Hasher & Zacks, 1979, 1984; Schneider & Shiffrin, 1977). In less familiar situations, arousal of a range of responses that exceed a ceiling of response strength becomes conscious. Individuals will select a response from these alternatives, or, if unsatisfied with the options, will search their memories again for alternatives. The cognitive processes in bottom-up models, and their juxtaposition to neighboring processes, readily suggest clinical problems. For example, according to the model illustrated in Figure 13.1, cognitive deficits may result from (1) an overly restrictive attentional filter, which results in a person’s missing key information; (2) sensory icons that are quickly disrupted by subsequent information; (3) inaccurate encoding of incoming information; (4) rapid decay of information from short-term memory; (5) diminished consolidation to long-term memory; (6) inability to retrieve information in the long-term store; (7) an impoverished set of responses available for selection; and/or (8) random selection of responses from the response hierarchy. Similarly, these problem foci suggest specific rehabilitation strategies. As an example, remediation of attentional deficits may include self-­instructional strategies in which people tell themselves to focus their attention on narrow stimulus bands; repeated practice on attentional tasks; and differential reinforcement for attention to targeted stimuli.

Assessing Cognitive Processing Deficits A necessary part of clinical interaction is making sense of cognitive deficits to inform a rehabilitation plan. To meet this challenge, a group of neuroscientists developed the MATRICS Consensus Cognitive Battery (MCCB) assessment battery (Green, Harris, & Nuechterlein, 2014; Green et al., 2008; Kern, Green, Nuechterlein, & Deng, 2004; Nuechterlein, Green, & Kern, 2023; Nuechterlein et al., 2008), mentioned at the start of this chapter and described briefly in Chapter 5. The MCCB was developed to meet two goals. First, it was meant to be a battery for assessing different elements of cognitive processes like those summarized in Figure 13.1. The MCCB includes tests assessing seven cognitive domains that emerged from factor analyses of existing measures: attention/vigilance, working memory, speed of processing, verbal learning, visual learning, reasoning, and social cognition (Nuechterlein et al., 2004). Second, the MATRICS battery needed

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to meet the standards of good assessment in the context of rehabilitation services: test– retest reliability, utility as a repeated measure, relationship to functioning, and sensitivity to change. After significant work on psychometrics, including establishing norms for the measures, the battery emerged as a collection of 10 subtests measuring the breadth of cognitive deficits. The MCCB has been used to inform medication regimens for people with schizophrenia (Nuechterlein et al., 2023). Experts are attempting to meet similar goals for rehabilitation practitioners.

The Link between Processing Deficits and Social Disabilities Although some rehabilitation providers might argue that improving a person’s memory or attentional abilities is an important goal in its own right, most agree that cognitive remediation is best understood as an important step in helping people better understand social situations, which in turn is an essential step in achieving life goals. Hence, the development of cognitive rehabilitation strategies rests on identifying specific cognitive impairments that interfere with social functioning and/or the pursuit of life goals (Bellack, Gold, & Buchanan, 1999). Research suggests that 20–60% of variance in social functioning is due to cognitive processes (Fett et al., 2011; Green, Kern, Braff, & Mintz, 2000). In research summaries, Green (1996, 1998) found three sets of correlations, which are illustrated in Figure 13.2; he divided the social functioning sphere into three progressively complex domains for these summaries. Psychosocial skill acquisition represents the discrete behaviors that provide the necessary foundation for interpersonal interaction. Social problem solving represents more dynamic and reactive strategies for resolving barriers to situational goals. The most macro-level construct is community outcomes, representing the attainment of social roles commensurate with most life goals (e.g., working, living independently, and developing/maintaining relationships). Psychosocial skill acquisition was shown to be significantly associated with memory, especially with verbal recall, and with attention and vigilance (for a comprehensive review of the relationship between measures of social cognition and social functioning, see Fett et al., 2011). Correlations between executive functioning and skill acquisition were found in some studies, but these results need to be further replicated. Social problem solving was also associated with verbal recall and vigilance, but not with executive functioning. Community outcome was associated with verbal recall and executive functioning. An interesting pattern emerges when the sum of these findings in Figure 13.2 is examined: The more complex social functioning constructs seem to be associated with the more complex cognitive processes. It is important to note that most of these findings represent cross-­sectional correlations, so the direction of the associations is generally not clear. Future research needs to discern whether cognitive processes in fact are causes of social functioning or whether these correlations represent some other kind of association. For further reading about the relationship between social cognition and functioning in schizophrenia, readers might consult Green, Horan, and Lee (2019) for a comprehensive review. Researchers have developed a battery of social-­cognitive measures in the same manner as the MCCB was developed for measuring cognitive deficits. The Social Cognition Psychometric Evaluation (SCOPE) group developed a battery of measures that assess deficits in social cognition (Pinkham, Harvey, & Penn, 2018; Pinkham et al., 2013). As the MATRICS group did with the MCCB for cognitive processes, the SCOPE group sought to identify the key domains that make up social cognition and to develop a psychometrically sound battery for assessing these domains. The resulting battery includes eight subtests that assess emotion, social perception, and social reasoning. The most

13.  Psychosis and Cognitive Challenges 237 

/ acquisition

FIGURE 13.2.  The associations between cognitive processing and social functioning. Cognitive processes represent the three core concerns: attention, memory, and executive functioning. Social functioning includes psychosocial skills acquisition, social problem solving, and community outcome.

recent psychometric validation work with this battery resulted in SCOPE recommending the use of only three of the measures within this battery, all of which measure emotional processing and mental state attribution (Pinkham et al., 2018). The social perception and attribution style measures included in the battery are not recommended for use by SCOPE given the findings of their psychometric trials. Therefore, SCOPE concludes that additional work is needed to develop measures of these domains of social cognition, and the SCOPE battery cannot yet be considered a comprehensive battery of social cognition.

The Impact of Interventions for Cognitive Processing Deficits Green and Nuechterlein (1999) have framed the connection between cognitive and social functioning impairment as the delta question: Namely, what changes in cognitive processes correspond with changes in functional outcome? Three principles that address the delta question guide the development of strategies for improving cognitive processes relevant to social goals: restoration, compensation, and reorganization (Bellack et al., 1999; Spaulding et al., 1999). Restoration represents the impact of “mental exercising,” which leads to regaining part or all of an original cognitive process. Compensation provides an external cognitive prosthetic or crutch that improves cognitive functioning. Reorganization is a more elaborate form of compensation, in which people’s social environments are set up so that they are better able to understand task demands given their limited cognitive abilities. Both pharmacological and rehabilitation interventions may achieve the goals implied by these principles.

Psychopharmacological Interventions Psychotropic medications yield complex effects on the cognitive deficits relevant to psychiatric disabilities. Conventional antipsychotic medications, for example, have shown a mixed pattern of impact (Blanchard & Neale, 1992; Medalia, Gold, & Merriam, 1988;

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Mishara & Goldberg, 2004; Spohn & Strauss, 1989). Low to moderate doses of conventional antipsychotic medications seem to improve impairments in attention and vigilance but have no measurable effects on memory. High doses of these medications may actually decrease vigilance and memory from their symptomatic baseline levels. Given the role of learning in the skills training component of rehabilitation, deficits in vigilance and memory could undermine a person’s participation in their rehabilitation program (Corrigan & Penn, 1995). The atypical (second-­generation) antipsychotic medications, which are now more widely used, seem to have a better profile in terms of ameliorating cognitive impairments than first generation antipsychotics, though there are mixed findings regarding the cognitive impact of specific second-­generation antipsychotics (Nielsen et al., 2015). A meta-­analysis of RCTs conducted by Baldez and colleagues (2021) revealed that atypical antipsychotics are effective for targeting cognition, but different drugs are more effective for different cognitive domains. They found that olanzapine is the drug with superior results in the greatest number of cognitive domains, while haloperidol (a typical first-­ generation antipsychotic) shows the poorest performance in all cognitive domains. Antidepressant medications largely yield positive effects on cognitive processes (Perini et al., 2019; Rosenblat, Kakar, & McIntyre, 2016). Mood-­stabilizing drugs like lithium may, however, have negative consequences by slowing cognitive speed (Wingo, Wingo, Harvey, & Baldessarini, 2009; Rybakowski, 2016). All benefits that occur because of psychotropic medications seem to be restorative in character (i.e., direct improvement in basic functions rather than compensation or reorganization by some external prosthetic mechanism). Despite this positive profile, research has failed to show that the cognitive abilities of people with serious mental illness return to “normal” levels after medication use alone (Keefe, Silva, Perkins, & Lieberman, 1999; Rund & Borg, 1999). Plenty of room remains for improvement in cognitive functioning, which may be facilitated by rehabilitation approaches. Chapter 9 more completely summarizes the role of medications in psychiatric rehabilitation.

Rehabilitation Interventions Researchers have begun to identify and organize sets of cognitive rehabilitation strategies (Rakitzi, Georgila, & Becker-­Woitag, 2021; Volker & Medalia, 2010). Two types are often identified: targeted programs, which seek to remediate individual processing deficits, with social impairments improving as a secondary result; and integrated programs, which combine cognitive and social interventions to directly address the interpersonal deficits that arise from interpersonal dysfunctions. TARGETED  PROGRAMS

Three types of targeted rehabilitation programs that correspond with the three principles of cognitive rehabilitation have emerged in the literature: restoration, compensation, and reorganization (Kurtz, Moberg, Gur, & Gur, 2001; Twamley, Jeste, & Bellack, 2003); they are summarized in Figure 13.3. Interventions promoting restoration are largely repetitive exercises that seek to improve specific attention, memory, or executive functioning activities. Repeated practice is assumed to remediate the corresponding deficit. Compensatory approaches teach the person some sort of cognitive skill that is meant to augment the impaired cognitive function. Reorganizational approaches help people to offset cognitive limitations with environmental cues. Each of these approaches is discussed

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more fully in later sections. These three types of targeted approaches may conceivably be used to remediate deficits in the three core impairment areas: attention, memory, and executive functioning. The interaction of approaches with deficit areas yields a matrix of possible interventions, as outlined in Figure 13.3, in which a number of rehabilitation interventions might fall within each cell.

Restoring Cognition through Repeated Practice.  Repeated practice has more than a 50-year history of development and evaluation (Bell, Bryson, Greig, Corcoran, & Wexler, 2001; Bell, Bryson, & Wexler, 2003; Green et al., 1990; Karras, 1962, 1968; Medalia, Aluma, Tryon, & Merriam, 1998; Meiselman, 1973; van der Does & Van den Bosch, 1992; Wagner, 1968). Briefly, this intervention instructs participants through multiple trials of attentional, memory, or executive functioning tasks; the assumption is that not will repeated practice strengthen performance on these specific skills but also the improvement will generalize to related cognitive functions. An example from Bell et al. (2001, 2003) illustrates this approach. In a visual tracking task meant to improve sustained attention, participants see a black line moving across a red background on a computer screen. Yellow cubes appear along the line as it moves. Participants are instructed to focus at the end of the line and click the mouse whenever a yellow cube appears. A “TA DA” sound is heard when a response is correct, and a discordant sound when it is wrong. The speed and duration of the black line and yellow cubes are changed to increase task difficulty. Errorless learning approaches have been used to augment repeated practice (Cella et al., 2019; Kern, Liberman, Kopelowicz, Mintz, & Green, 2002; Kern & Reddy, 2014). In such an approach, tasks begin with simple components and only progress to more complex ones after a person has met a 100% criterion. It is assumed that learning is more durable if mistakes are minimized or totally eliminated during training. Performance on repeated practice has been enhanced with reinforcers. Errorless learning can also include vocational rehabilitation interventions in which work functions that are causing challenges are broken into smaller tasks and addressed hierarchically using cues, tasks, modeling, and self-­instruction, until high levels of performance are achieved (Killaspy et al., 2022). Compensating for Deficits via Cognitive Prosthetics.  Compensatory strategies have often been used to improve memory (Koh, 1978; Koh, Grinker, Marusarz, & Forman, 1981; Larsen & Fromholt, 1976; van der Gaag, Kern, van den Bosch, & Liberman,

Attention

Memory

Executive functioning

Restorative: Through repeated practice Compensatory: Through learning strategic cognitive shortcuts Reorganizational: Through environmental cues and other manipulations

FIGURE 13.3.  Examples of the three types of targeted cognitive rehabilitation for the three core cognitive concerns.

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240

2002; Volker & Medalia, 2010). Four such strategies have been shown to be particularly powerful; the first three are helpful for enhancing the recall of verbal information. 1.  Encoding. People are instructed to put a new concept into their own words. One way to do this is to associate a personally meaningful word or phrase with the concept to be learned. For example, Harry was to learn that his friend Mark lived on Monroe Street, so he encoded it as “one of the M presidents, like the streets in downtown Chicago.” 2.  Chunking is organizing information into meaningful bits. Perhaps the best example is 17086144770, which can be more easily recalled as the phone number 1 (708) 614-4770. 3.  Categorization is organizing information into meaningful groups. Consider this list: Red

Rose

Duck

Horse

Black

Dog

Apple

Blue

Lily

Orchid

Tulip

Pear

Crow

Brown

Mouse

Lime

Cat

Lemon

Grape

Yellow

A person might be better able to recall them when reorganizing the list into colors (red, blue, brown, black, yellow), animals (dog, cat, duck, crow, horse, mouse), flowers (tulip, rose, lily, orchid), and fruit (lime, apple, pear, lemon, grape). 4.  Self-­instruction (Meichenbaum & Cameron, 1973; van der Gaag et al., 2002). This strategy is especially useful for helping a person to recall steps in a personally relevant behavior, such as brushing teeth, taking medicine, or lighting a charcoal grill. Self-­instruction begins with having a model demonstrate the steps of a multicomponent behavior and say these steps aloud. Consider the following steps in paying a phone bill: First, I get out my phone bill. Then I get out my checkbook. I separate the stub that needs to be returned to the phone company from the statement. I then write down the amount on the stub in the ledger of my checkbook and subtract it from my balance. Then I turn to the corresponding blank check and fill out the date, amount, and payee. I then sign the check. I put the check and stub in the return envelope. I put my return address on the envelope, and then a postage stamp. I then put the envelope in the mailbox in my apartment building. After reviewing these steps aloud, the participant is asked to repeat the steps while also demonstrating them. Sometimes the steps are written on a piece of paper to remind the person.

Reorganizing the Environment to Offset Deficits. Two major reorganizing approaches have been developed and evaluated: shaping and environmental adaptation. Shaping, a strategy from behavior therapy, involves differential reinforcement of

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successive approximations to a goal behavior. In this sense, it reorganizes complex behaviors into steps, with the first being relatively easy and the rest becoming increasingly difficult. For example, the complex task of introducing oneself (with the goal of smiling and saying, “Hello, my name is X. Nice day, isn’t it?”) includes six steps: Step 1: Walk up to another person. Step 2: Look the person in the eye. Step 3: Smile. Step 4: Say, “Hello.” Step 5: Say, “My name is X.” Step 6: Say, “Nice day, isn’t it?” In shaping, the person is first reinforced for doing Step 1 alone. Once this step is mastered, the next goal for which reinforcement is given is doing Step 2 and Step 1. Steps continue to be added until the person is able to do all six steps at once, which is the goal behavior. What is a complex and cognitively overwhelming task for the person has been broken down and reorganized into doable steps. Shaping has been applied to the cognitive deficits that result from psychiatric disabilities (Silverstein, Menditto, & Stuve, 2001). Time is often used as the unit to guide shaping. Participants are started on a cognitive task (e.g., office work such as folding, cutting, and stapling) for a short period of time (e.g., 5 minutes), and shaping continues until they can do the task for 30 minutes or more (Bellus, Kost, Vergo, Gramse, & Weiss, 1999; Menditto, Baldwin, O’Neal, & Beck, 1991; Silverstein, Hitzel, & Schenkel, 1998; Spaulding, Storms, Goodrich, & Sullivan, 1986). Reinforcements used in these programs are typically points or tokens that are part of a token economy. The use of incentives and reinforcement for shaping and errorless learning echoes the recommendations of expert panels, which have argued that interventions targeting motivation may be important adjuncts to cognitive rehabilitation (Velligan, Kern, & Gold, 2006). People with psychiatric disabilities often have difficulty with what has been called conation in psychology (i.e., personal drive and volition). People with schizophrenia, especially those with pronounced negative symptoms, may need external motivators, along with cognitive rehabilitation interventions. This may include the judicious use of approaches such as token economies (Corrigan, 1995). Environmental adaptation is the second reorganizational approach to cognitive rehabilitation. In this approach, an otherwise complex environment is simplified, so that people with cognitive impairments can accurately perceive and understand the reorganized setting (Heinssen, 1996). Studies by Velligan and colleagues (Velligan et al., 2000; Velligan, Lam, Ereshefsky, & Miller, 2003; Maples & Velligan, 2008; Velligan et al., 2015) have identified two types of cognitive deficits that govern environmental alterations: apathy and distraction. Individuals with apathetic patterns tend to miss relevant environmental cues or are unable to organize multitask processes into meaningful steps. Relevant alterations might include using checklists for complex tasks, placing signs and equipment for daily activities in obvious places, and using labels or electronic devices (e.g., computer-­driven medication dispensers and alarms) to cue behavior. These are all types of assistive technologies that might be employed in the workplace and in educational settings to enable the success of people with serious mental illnesses impacting cognition. Individuals with distracted patterns tend to be overwhelmed by attending to too much information in a situation, including cues that are irrelevant to the goals of the

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situation (Velligan et al., 2003). For example, such a person may not be able to understand a message from an employer because they are also listening to a radio talk show in the background instead of tuning it out. Environmental alterations for these individuals may include organizing supplies to minimize incorrect use (e.g., placing complete outfits—shirt, pants, and underwear—in separate boxes in a closet) or minimizing background noise by turning off radios and televisions.

The Use of Computers in Targeted Cognitive Rehabilitation.  Cognitive rehabilitation frequently includes computers. In fact, numerous software packages and webbased tools have been developed to advance the cognitive rehabilitation agenda, though not necessarily for psychiatric disabilities. Packages specific to cognitive rehabilitation have been used alongside other programs that, although developed for general education or entertainment purposes, may have properties relevant to rehabilitation goals. The important issue for the rehabilitation provider is to discern which of these computer ­programs, if any, will benefit program participants. The interested reader should see Herlands and Medalia (2016) and Medalia, Herlands, Saperstein, and Revheim (2017) for a discussion of available software packages and practical worksheets and tools to assist with evaluating the utility of these packages for specific cognitive rehabilitation goals. Computers and the sophisticated graphics that computers make possible have a natural allure for both rehabilitation providers and consumers. They offer the promise of cutting-edge technology that conceivably may remediate fundamental deficits. However, the promise of computer technology may not always coincide with evidence that actually supports it. Two meta-­analyses support the efficacy of computerized cognitive remediation with individuals with schizophrenia (Grynszpan et al., 2011; Prikken, Konings, Lei, Begemann, & Sommer, 2019). These meta-­analyses revealed significant small-to-­medium treatment effects for attention, working memory, positive symptoms, and depressive symptoms, but not for social cognition or functional outcomes. Criteria have been developed to help providers discern whether any particular computer package will be useful for the cognitive needs of participants: • There is evidence that the computer package improves functioning in people with cognitive processing deficits.

• There is evidence that the computer package improves cognitive deficits related specifically to the psychiatric disabilities of program participants.

• Improvement in cognitive deficits yields some meaningful change in participants’ lives; it does not just teach the participants to press the computer keys faster.

• The amount of time it takes to gain benefits from participating in the program

is not excessive. For example, daily, hour-long participation in a cognitive rehabilitation program to improve attentional participation from the 50th to the 60th percentile is not likely to be cost-­effective. • The requirement for associated computer hardware does not require additional excessive costs. INTEGRATED PROGRAMS: ADDRESSING MEANINGFUL SOCIAL-­C OGNITIVE  REHABILITATION

Given the distinction between cognitive and social-­ cognitive deficits in the assessment arena (Penn, Corrigan, Bentall, Racenstein, & Newman, 1997), social-­cognitive

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rehabilitation has evolved into its own set of approaches to helping people attain personal goals (Kurtz & Richardson, 2012). The largest group of these approaches integrates cognitive and social rehabilitation strategies. Three integrated programs have been well developed and studied: integrated psychological therapy (IPT), cognitive adaptation training (CAT), and what is called vocational cognitive rehabilitation in this chapter.

Integrated Psychological Therapy. IPT combines cognitive retraining with social skills training to help people overcome processing deficits, so that they can better understand and interact with the social world (Aloi et al., 2020; Spaulding et al., 1999; Volker, Mueller, & Schmidt, 2011). IPT is a highly structured approach conducted in hour-long group meetings, three to five times a week, for several months to a year or more. Participants progress through five subprograms that begin by targeting basic cognitive processes and move to social-­cognitive processes and social skills: 1.  Cognitive differentiation. Participants in this subprogram use repeated practice to improve stimulus discrimination during card-­sorting tasks. When they show mastery of this task, they move to concept formation, which includes word problems involving antonym and synonym recognition. Finally, systematic search strategies are learned through a variation of the Twenty Questions game. 2.  Social perception. One goal of this subprogram is to help participants discriminate between important social information and environmental noise. To accomplish this, participants view slides in which actors interact in different social situations and display emotions of varying intensity. As the subprogram progresses, emotions and interactions increase in complexity and distress. Participants are instructed to report the observable characteristics of actors. They are then asked to interpret the intent of actions and the emotion displayed by actors. 3.  Verbal communication. This subprogram extrapolates skills learned in the first two subprograms to improve participants’ abilities to pay attention to the statements of others and to understand accurately what is being said. During initial exercises, participants are rewarded for repeating the verbatim comments of partners. Literal repetition is quickly replaced with paraphrasing the partners’ statements. Reciprocal communication is improved with questions that foster mutuality of listening and talking. Participants are taught the utility of basic question words (who, what, when, where) and are prompted to use them in conversation. Participants are then instructed to continue free communication without immediate prompts. 4–5.  Social skills and interpersonal problem solving. The last two subprograms closely parallel more traditional behavioral skills training (Liberman, 1988). Briefly, individual social skills are modeled by group leaders, participants rehearse the skills in role plays, and feedback is provided by peers. The IPT social skills subprogram is facilitated by focusing on cognitive components of the task. Similarly, acquisition of traditional problem-­solving steps is enhanced by accentuating cognitive aspects. For example, selecting a solution to a problem involves cognitive analysis of the success and failure of similar solutions in other situations.

Cognitive Adaptation Training.  CAT is a manualized treatment implemented in participants’ homes; it is designed to bypass impairments and improve functional engagement in the daily lives of people with serious mental illness (Draper, Stutes, Maples, & Velligan, 2009; Velligan et al., 2008). In this treatment, rehabilitation counselors

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regularly support functional independence for people with mental illness after a treatment plan has been developed and implemented. To develop a CAT treatment plan, assessments of a person’s executive functioning (i.e., apathy and disinhibition) are considered in conjunction with the person’s overt independent living behaviors. An apathy assessment focuses on ascertaining a person’s ability to initiate tasks and follow them through to completion. For example, if a person starts to clean a bathroom, can the individual complete the task? If not, what part of the process is problematic? If the counselor discovers that finding cleaning supplies incites frustration and leads to discontinuation of the task, then the remedy may be to consolidate supplies for placement in the bathroom closet to aid in task completion. In an example related to medication use, perhaps a person can begin placing medications into a pillbox organizer but has difficulty systematically completing the task. Here, a therapist may help the person devise a system for independently placing each medication into a weekly or monthly pillbox organizer. A disinhibition assessment focuses on how distracting stimuli interfere with task completion. For example, such an assessment in regard to medication use may ascertain whether outdated prescriptions contained in the bathroom divert the person from taking currently prescribed medications. CAT addresses executive functioning issues through problem solving and organizing a person’s environment by integrating reminders (e.g., signs, lists, alarm clocks). It also organizes a person’s possessions to improve engagement in cooking, cleaning, self-care, and leisure pursuits. Generally, individuals with more significant executive functioning impairments require more structured environments with more prominent, obvious reminders. People with greater apathy levels (e.g., inability to wake to take medications) generally require environmental supports integrated to trigger initiation of behavior and completion of an entire task (e.g., an alarm clock with a recorded personal voice reminder to take medications). If disinhibition appears to be of significant concern (e.g., taking an outdated medication or too much of a current medication), then treatment involves removal of distracting stimuli (e.g., taking old medications out of the medicine cabinet and adding signage to avoid excess ingestion). CAT is focused on solutions to problems (e.g., making sure a person takes the correct medication dosage at the correct time). It can also address difficulties related to self-care behaviors with appropriate solutions that cue and trigger particular responses (e.g., after washing and drying dishes, putting them into the appropriate kitchen cabinet). As a compensatory strategy for serious mental illness, CAT has been shown to increase medication decisions, decrease symptoms, and improve functional outcomes on both individual and social levels (Stiekema et al., 2020; Velligan et al., 2000, 2002, 2015).

Vocational Cognitive Rehabilitation.  Vocational cognitive rehabilitation helps people achieve work goals by integrating cognitive deficits that might undermine these goals directly into the persons’ intervention plans (McGurk, Mueser, DeRosa, & Wolfe, 2009). Specifically, participants are engaged in 24 hours of computer-based cognitive exercises (McGurk, Mueser, Feldman, Wolfe, & Pascaris, 2007; McGurk, Twamley, Sitzer, McHugo, & Mueser, 2007) while participating in vocational rehabilitation. The computer tasks provide practice in attention and concentration, psychomotor speed, learning and memory, and executive functions. In addition, participants engage in weekly groups, where they examine the role of cognition in work activities, as well as learn compensatory strategies that may be useful on the job (e.g., remaining focused and improving cognitive speed). The results of one study suggested that participants who received vocational cognitive rehabilitation demonstrated better vocational outcomes 2 years later

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than those who did not (McGurk et al., 2009). Another study compared the receipt of cognitive remediation along with cognitive-­behavioral therapy (CBT) to receipt of CBT alone, finding better vocational outcomes among those who received cognitive remediation (Kukla, Bell, & Lysaker, 2018). THE EVIDENCE  REVISITED

Research on cognitive rehabilitation has grown exponentially (Bowie et al., 2020; McGurk et al., 2013). Results of a meta-­analysis examining the impact of 26 RCTs on 1,151 participants are encouraging (McGurk, Twamley, et al., 2007). Cognitive rehabilitation yielded medium effects on cognitive deficits, slightly lower effects on social functioning, and small effects on symptoms. Another meta-­analysis including 2,104 participants found durable effects on global cognition and functioning, and these effects were enhanced when cognitive rehabilitation was provided in conjunction with other psychiatric rehabilitation interventions (Wykes, Huddy, Cellard, McGurk, & Czobor, 2011). Recent research suggests that the effects of cognitive remediation endure over time (Buonocore et al., 2018, 2022). Future research needs to continue to examine whether improvements in cognitive deficits translate into meaningful changes in personal goals. For instance, does improvement on an attentional task help people to get jobs of interest to them?

UNDERSTANDING DEFICITS IN THOUGHT CONTENT Delusions constitute the major form of content deficits found in people with psychiatric disabilities. Delusions are false beliefs that may impede people from achieving life goals, because they undermine complete understanding of social situations. This section reviews the form and impact of delusions, as well as cognitive therapy principles that help people overcome the disabilities resulting from delusions.

Specific Models of Delusions and Other Content Deficits Delusions have traditionally been regarded as fixed, false beliefs, held with absolute conviction and not amenable to reason (see, e.g., DSM-III-R; APA, 1987). Widely acknowledged problems with the traditional psychiatric definitions, however, have led to phenomenological studies in which experiences of delusions are better described and understood; the more recent editions of DSM (APA, 1994, 2000, 2013, 2022) reflect this work. The idea that delusions are held with absolute conviction has been replaced by the concept that there are fluctuating rates of conviction, preoccupation, and distress caused by the false beliefs, as well as of action taken in accordance with the beliefs (Garety & Freeman, 1999; Garety & Hemsley, 1994; Strauss, 1969). Examples of these four dimensions—­ conviction, preoccupation, distress, and action—are summarized in Figure 13.4. The four dimensions are relatively independent of one another (Garety & Hemsley, 1994; Strauss, 1969) and have helped shift the conceptualization of delusions as categorical entities to a view of them as multidimensional (Appelbaum, Grisso, Frank, O’Donnell, & Kupfer, 1999; Blackwood et al., 2001; Garety & Freeman, 1999). Accounts of delusional experiences have noted certain themes particular to people with schizophrenia (APA, 2022). Persecutory or paranoid delusions (beliefs that others have malevolent intentions toward a person) are most commonly observed (Bentall,

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Definition and scale

Examples

Conviction

The degree to which the person believes the delusion is true.

Jack is absolutely sure that the CIA is following him because he joined a radical student group in college. (7)

On a 7-point scale, how certain are you that this belief is true? Not at all certain 1

Preoccupation

Waffling

Absolutely convinced

4

7

Jack rarely thinks about the CIA following him; “after 8 years, I have learned how to live with it.” (1)

The amount of time the person spends thinking about the delusion. On a 7-point scale, how much time do you spend thinking about the belief? No time at all 1

Distress

Shirley can’t get the thoughts about devil voices out of her head, no matter how she tries to block them. (7) Almost all the time

4

7

The degree to which thinking about the belief upsets the person.

Jack isn’t at all distressed about the thought of being followed by the CIA. (1)

On a 7-point scale, how upset does thinking about this belief make you?

Shirley is highly anxious when she thinks about the devil voices. (7)

Not at all upset 1

Action

Some time

Shirley is not at all certain that the voices she hears in her head are from the devil. (1)

Somewhat stressed

Highly upset

4

7

Jack has learned how to live with “the CIA following me.” He is not motivated On a 7-point scale, how much do you to act further on these beliefs. (1) want to change or otherwise control Because Shirley is so tormented by the thought that the devil is speaking to these beliefs? her, she is actively trying to control her Not at all Uncertain Urgently thoughts. (7) The motivation to act to control the delusion.

1

4

7

FIGURE 13.4.  The four dimensions of delusions. Each might be assessed using multipoint scales. Shirley’s examples show how delusions (in her case, her belief that the devil is talking to her) often arise from hallucinations (in her case, hearing voices).

2001), grandiose delusions (an exaggerated sense of one’s importance, power, knowledge or identity), ideas of reference (in which apparently innocuous events are believed to have some special significance for the person), and delusions of control (a so-­called “passivity” symptom—­beliefs that one’s actions are controlled by external forces) are also common (Frith, 1999). Delusions are evident not only in the schizophrenia spectrum but also in association with other serious psychiatric conditions, including what was formerly known as affective psychosis (Goodwin, Alderson, & Rosenthal, 1971), as well as mania (Taylor & Abrams, 1975), depression (Maher & Spitzer, 1993), and paranoia

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(Kendler, Gruenberg, & Tsuang, 1985). Experts believe that it may be more accurate to conceptualize a continuum of delusional beliefs in the adult population as a whole rather than a categorical diagnosis of delusions (i.e., a person is or is not delusional). Failures in reality discrimination (i.e., in the ability to distinguish between real and imaginary events) can be experimentally demonstrated in individuals without apparent disorders (Perky, 1910; Bentall & Slade, 1985; McKellar, 1968; Posey & Losch, 1983; West, 1948; Young, Scheftner, Klerman, & Andreasen, 1986). Verdoux et al. (1998) found that individuals with no psychiatric history demonstrated some evidence of delusional ideation, which might include attenuated versions of beliefs regarding persecution, mysticism, and guilt. Such findings suggest that delusions represent a dimensional phenomenon lying on a continuum with normality. Three models have been developed to explain the creation and maintenance of delusions as clinical phenomena: attributional bias, metarepresentation, and cognitive biases.

Attributional Bias People without psychiatric disabilities often demonstrate a self-­serving attributional bias when they are explaining the causes of events; that is, they attribute positive outcomes in social situations to their own individual characteristics, such as a proactive action or an intrinsic quality; by contrast, they attribute negative outcomes to something outside themselves. Such biases are exaggerated among people with persecutory delusions. Specifically, as compared to nonclinical and depressed controls, people with paranoid ideation take too much credit for success (i.e., they display an exaggerated internal attribution of positive events), while their responsibility for failure is excessively denied (i.e., negative events are externally attributed) (Candido & Romney, 1990; Bentall, Kinderman, & Kaney, 1994; Kinderman & Bentall, 1997; Lyon, Kaney, & Bentall, 1994). People with paranoid ideation tend to personalize their attributions; in order to protect their self-­ esteem, those with persecutory delusions are likely to blame other people rather than situational factors when things go wrong (Bentall et al., 1994; Kinderman & Bentall, 1997). Blaming others leads to the kinds of false beliefs that are observed in paranoid delusions.

Deficits in Metarepresentation Metarepresentation, which is also often studied as theory of mind (Frith, 1994), is the normal psychological ability to understand the intentions and behaviors of other people. Theory of mind influences the way one explains the causes of events in the social world to oneself and to others. The generation of causal attributions that are external and personal, as compared to those that are external and situational (i.e., delusional beliefs that are explained by other persons’ behavior rather than by circumstances), may be influenced by poor theory-of-mind abilities, because these are constituents of a social-­cognitive domain that involves anticipating and interpreting the behaviors of others (Bentall, 1994; Kinderman & Bentall, 1997; Kinderman, Dunbar, & Bentall, 1998). Conversely put, in order to generate external situational attributions appropriately, one must have an appreciation of the mental states and intentions of others, rather than blaming other people (i.e., having a personalizing bias) for negative events. One must be able to imagine the world from the perspectives of others, as well as the ways in which one’s own experiences affect reactions toward others. Deficits in metarepresentation (disordered theory-of-mind abilities) cause one to misinterpret the intentions of others, which in turn may contribute to delusional ideation (Frith, 1994; Frith & Corcoran, 1996; Corcoran, 2001).

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Cognitive Biases A range of cognitive biases has been associated with the development and maintenance of delusions, but the most extensively studied is the “jumping to conclusions” (JTC) bias (Dudley, Taylor, Wickham, & Hutton, 2016; McLean, Mattiske, & Balzan, 2017; Gawę, Staszkiewicz, & Balzan, 2017). The JTC bias occurs when an individual makes interpretations and judgments early and based on inadequate evidence (McLean et al., 2017). Another form of cognitive bias that has been reliably associated with delusions in schizophrenia is the “Bias against disconfirmatory evidence” (BADE), which occurs when an individual is presented with accumulating evidence in contrast with their initial judgment and fails to reevaluate (Sanford, Veckenstedt, Moritz, Balzan, & Woodward, 2014; Woodward, Moritz, Cuttler, & Whitman, 2006).

Interventions to Remediate Deficits in Thought Content Aaron Beck (1976), Albert Ellis (1977), and others (Freeman & Davis, 1990; Kendall, 1982) developed cognitive therapy as a means for addressing the depression and anxiety that results from the content of certain thoughts. As illustrated in Figure 13.5, Ellis (1977) described the problems caused by thoughts in terms of antecedents (A), beliefs (B), and consequences (C). The presumed relationship between an antecedent and a consequence is illustrated at the top: A student worries about having failed a class test. This minor worry can become significant depression or anxiety when mediated by a belief such as “I must be a stupid student. I am worthless because I have no discipline to study for tests” (abbreviated as “I am stupid and worthless” in the Figure 13.5). The central goal of cognitive therapy is to teach people to identify hurtful, usually irrational thoughts, such as this belief, and to obtain evidence that counters or reframes them. For example, this student might learn to say, “Everyone fails a test once in a while. It does not mean I am a bad person.” In this way, people can control the psychological distress that results from hurtful thoughts. Specific methods to facilitate the process of identifying and countering irrational thoughts are summarized later in this section. In the past two decades or so, researchers have applied this model to delusional thoughts. Figure 13.6 provides several examples of delusional beliefs under B. Not only might such delusional beliefs cause extreme psychological distress, but their consequences might undermine life goals. Hence, cognitive therapy may help people cope with delusions, so that they do not undermine the person’s goals for work and independent living. Sitko, Bewick, Owens, and Masterson (2020) conducted a meta-­analysis demonstrating the effectiveness of CBT for psychosis (CBTp) for addressing positive symptoms, delusions, hallucinations, and negative symptoms across time across 28 studies.

Applying Cognitive Therapy to Delusions Four steps are important for applying cognitive therapy to the needs of a person with delusions: 1. Engage with the person to develop a collaborative therapeutic relationship. 2. Identify, assess, define, and otherwise make sense of delusional beliefs that are causing problems for the person. 3. Strategically challenge these beliefs. 4. Once the person has become somewhat uncertain about the beliefs, help the person develop counters.

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FIGURE 13.5.  A diagram illustrating how irrational thoughts cause symptomatic reactions. A is the antecedent, the situation that leads up to a possible symptom. C is the consequence, the result of the antecedent. B is the intervening belief that can evolve an otherwise mild or benign consequence into depression or anxiety.

ENGAGEMENT

Engagement is central to successful cognitive therapy of delusions. People with schizophrenia or other psychiatric disabilities have repeatedly been told that they should “stop having these crazy thoughts.” As a result, people with delusions may be unwilling to talk with rehabilitation providers about their “odd” beliefs. In addition to the range of fundamental skills that foster any kind of therapeutic relationships, two tasks help counselors to break down this wall. First, providers will find it helpful to challenge the stigmatizing idea that delusions are qualitative marks distinguishing psychotic persons from the rest of the (“sane”) population. Instead, as outlined earlier in this chapter, participants are educated that delusions are just one of many examples of “problematic beliefs.” All people, whether challenged by psychiatric disabilities or not, have extreme beliefs that guide their lives—­beliefs that cannot be shown to be true. For example, some of our private thoughts regarding religion

FIGURE 13.6.  A diagram using the ABCs to illustrate how delusions may cause psychological distress or undermine life goals.

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fall into this category; empirical proof for private phenomena such as divine beings and miracles is impossible. Framing delusions as being on the same continuum as normal experience leads to the second task of engagement: identifying the person’s goals for cognitive therapy. Rather than having the rehabilitation provider set the goal (“get rid of those delusions”), the person decides the direction. The purpose of cognitive therapy is to determine how certain beliefs hurt the person, and how these beliefs can be reframed or in some other way controlled so that the negative impact is diminished. This process is called collaborative empiricism by Beck and colleagues (Beck, 1976; Beck, Rector, Stolar, & Grant, 2009). Harry Summerfield believed that he was George Washington, the first President of the United States, and that he did not work because “the President does not need a salary!” Hence, a therapeutic goal was to determine how to help Harry reconsider being George Washington, so that Harry would not have to give up on work and a social life. In this instance, neither the provider nor Harry needed to argue about whether Harry’s being Washington was true; they only needed to discuss what to do about this belief, so that the delusion would not narrow his vocational goals. ASSESSING  DELUSIONS

As stated earlier, delusions have been described as having three dimensions that are useful in defining the experience for individuals and in evaluating the impact of cognitive therapy (Chadwick, Birchwood, & Trower, 1996): 1.  Conviction. How certain is a person about a delusional belief? Likert scale items can reliably represent this dimension, from high (“I am consistently certain the belief is true”) to low (“I am frequently uncertain about the truth of the belief”) conviction. 2.  Preoccupation. How much time does the person spend thinking about delusions? This can be directly assessed by asking the person, “How often do you think about the belief?” Note that both conviction and preoccupation can change significantly over the normal course of a delusion, even without cognitive therapy. Hence, repeated measures are needed to obtain a relatively reliable picture of the current status of a delusion. 3.  Accommodation. Can the person conceive of beliefs or experiences that might disconfirm the delusions? Individuals who can generate more examples of accommodation are likely to receive greater benefit from cognitive therapy (Brett-Jones, Garety, & Hemsley, 1987). Hence, accommodation in some ways represents readiness to change. Brett-Jones et al. developed a method for assessing readiness to change delusions called reaction to hypothetical contradiction. A plausible hypothetical event that challenges the delusion is offered, and the individual is asked how such an event might alter the belief, if at all. People who are more open to hypothetical contradictions are more likely to benefit from cognitive therapy. Let us contrast Harry’s delusion about being George Washington to Joan Arnowicz’s belief that she was getting communications from outer space. Prior to cognitive therapy, Harry was highly convinced that he was George Washington: “No doubt about it; I’m the first President!” Joan was less certain about outer space communications: “Sometimes it seems like aliens are sending me messages through my teeth; other times, I’m not so sure. I wonder if my mind is playing tricks on me again.” Harry’s and Joan’s degree of preoccupation also differed. Harry didn’t spend a lot of time

13.  Psychosis and Cognitive Challenges 251 

thinking about being George Washington: “It’s just who I am. Why should I need to think about it?” Joan, on the other hand, was significantly stressed by her delusions. She rarely had it out of her mind. Both Harry and Joan seemed willing to accommodate alternative explanations. When Harry read a statement in a history book that Washington died more than 200 years ago, he wondered how this fit with his delusion. After Joan met a physicist from the local university, who said that direct communication with aliens was not physically possible, she felt a brief period of relief. CHALLENGING  BELIEFS

Rehabilitation providers who have engaged with participants, and have helped them to conceive of delusions from a cognitive perspective, can use the same menu of belief-­ challenging strategies as those used by cognitive therapists with other psychiatric disorders. The place to begin is to obtain evidence that challenges a belief. A provider and a person jointly look for evidence that diminishes the person’s conviction about a belief. As this evidence amasses, the individual is more easily able to generate counters to the delusion. A second way to challenge delusions is through empirical testing. Consistent with the typical approach to cognitive therapy, the rehabilitation provider and the person jointly set up a test to see whether reality corresponds with assumptions outlined by the delusion. Steps in this kind of test include defining evidence that would challenge a delusion, identifying ways to search for this evidence, actually engaging in a study to look for this evidence, and examining the impact of the search on the ongoing beliefs (Chadwick et al., 1996; Fennell, 1989). Rehabilitation providers need to make sure that all phases of evidence gathering are collaborative. A frustrated provider may be tempted to assume the role of a debater and try to disprove a delusion unilaterally. In this case, the provider has abandoned the basic principle of collaborative empiricism and has probably diminished their engagement with the person. This pitfall can be avoided by remembering the primary assumptions of the collaborative approach: Namely, all aspects of cognitive therapy are controlled jointly by the provider and the person. In fact, the provider may want to highlight the individual’s control and power in the therapy situation when the person seems to be responding poorly to a specific component of the intervention. When trying to find evidence that would challenge Harry’s belief about being George Washington, the counselor asked Harry to check out with respected others whether he could possibly be Washington. They first developed a survey about Washington, which Harry then administered to his rabbi and to the instructor in his composition class at night school. The results from both people added to Harry’s uncertainty about being Washington. An equally important task was to challenge Harry’s belief that work was not necessary because he had the president’s salary. In particular, Harry asked these respected others whether they thought that pursuit of a regular job was possible, even if he was, in fact, George Washington. Affirmative responses from both the rabbi and the instructor endorsed his burgeoning desire to seek work. DEVELOPING  COUNTERS

Once the person seems less certain about a problematic delusional belief, the rehabilitation counselor helps them develop counters to the belief, which may be used in the future when the person is hampered by the belief. For example, a counter to Harry’s belief that he was George Washington might be “No, that’s impossible. I can’t be the first

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President, because he’s been dead for over 200 years!” As in most other elements of cognitive therapy, the central aspect of developing counters is to ensure that the participant has an active role in generating the counters and in trying them out to make sure they are relevant and potent. Once again, a frustrated provider may err by constructing counters on their own and imposing them on the person. Role reversal is an excellent way to identify meaningful counters. In this approach, the counselor assumes the voice of the delusion, stating different versions of it. The participant, in turn, argues against the delusions, providing counters that challenge them. Role reversal is particularly powerful, because the provider can invoke statements that the participant has actually used to defend their belief. Counselor: So to remind you, Harry, for this exercise, I’m going to argue that I am George Washington. And you are going to come up with reasons why that can’t be so. Ready? Harry: Yep, let’s do it. Counselor: You know Harry, it might seem strange, but sometimes I think I am George Washington. Harry: You mean, like, the first President of the United States, the Father of our Country? Counselor: That’s me. Harry: But that’s impossible. He died more than 200 years ago. Counselor: Yeah, but I am from Virginia, and Washington was from Virginia. Harry: Sure, but, you know, not everyone from Virginia could be George Washington. Counselor: Maybe . . . but when I walk down the street, it seems that everyone is staring at me. It must be because I am famous and the first President. Harry: You know, sometimes I walk down the street, and people stare at me, too. I’m wondering if people are just being friendly and making eye contact. Or perhaps they are nosy. It doesn’t have to mean they think you are the president. Counselor: But sometimes I just feel special. Harry: Me too. I think we are all special. From this kind of interaction, Harry could identify counters that were meaningful for him: “I am still special even if I am not George Washington, which is, of course, impossible because he died over 200 years ago.” Role reversal is essentially a controlled argument in which the person struggles with and overcomes the problematic belief. A rehabilitation provider must keep two caveats in mind while engaging the person in this exercise. First, the provider should not give up on the role reversal too easily. Counselor: You know, Harry, it might seem strange, but sometimes I think I am George Washington. Harry: But that’s impossible. He died more than 200 years ago. Counselor: Wow, you are right. I never thought of it that way. I will stop thinking I am Washington.

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In this case, the rehabilitation counselor would be failing to mirror the true tension that Harry felt when holding his problematic belief. The interaction between a counselor and a person needs to progress through several exchanges to make sure that multiple facets of the delusion are challenged. Alternatively, the provider should not try to win the role reversal. In this case, all the provider has done is prove to the person that they are right for having a delusional belief. The provider should be attentive to how the participant is responding to the exercise, and back off a bit when the person is unable to counter any part of the role reversal.

SUMMARY AND CONCLUSIONS Many people with psychiatric disabilities are not able to achieve life goals because of cognitive deficits. Typically, these deficits are discussed in terms of process (how they think) and content (what they think). Process approaches frequently rely on stages that represent the combination of individual cognitive processes (e.g., attention, memory, and executive functioning) to yield an integrated thinking person. Cognitive rehabilitation may facilitate improvement in these deficits in three ways: restoration (“mental exercising” to help persons return to normal functioning), compensation (“prostheses” to assist people with cognitive tasks), or reorganization (environmental manipulation to help the persons with cognitive tasks). Two types of interventions incorporate these principles: (1) targeted approaches seek to improve individual processes through repeated practice, mnemonic strategies, or lists and prompts; and (2) integrated programs attempt to ensure that improvements in cognitive functioning lead to better social functioning and achievement of life goals. Delusions are common disabilities related to thought content. According to cognitive theory, delusions can be represented as extremes on a continuum. Steps to challenge delusional thoughts include engagement, assessing delusional beliefs, challenging the beliefs, and developing counters. Preliminary research on both cognitive rehabilitation and cognitive therapy for people with psychiatric disabilities has been encouraging. Outcome studies have shown that discrete cognitive processes and content areas improve after individuals participate in these services. Future research in this area, however, must show how improvement in specific cognitive deficits leads to meaningful change for these persons. Namely, how does being better able to attend to an information processing task translate into achieving work goals? Anchoring cognitive interventions in real-world goals will significantly benefit the ongoing development of treatment approaches in this area.

C H A P T E R 14

Criminal Justice

T

he United States’ incarceration rate is unsurpassed internationally. Between the mid-1970s and 2008, the rate of incarceration increased dramatically, after a period of almost 50 years of stability (Travis, Western, & Redburn, 2014). While rates have been declining slowly over the past decade and dropped 14% during the COVID19 pandemic, in the Spring of 2021, there were roughly 1.8 million people incarcerated in the United States, or 537 per 100,000 residents (Jang-Brown, Montagnet, & Heiss, 2021). Many, many of these people have psychiatric disabilities. As a result, criminal justice and mental health officials, along with researchers, policymakers, advocates, family members, and people with mental illness, have collaborated to develop innovative programs and policies to reduce the involvement of people with serious mental illness in the criminal justice system (Kennedy-Hendricks, Huskamp, Rutkow, & Barry, 2016). This chapter seeks to unpack complex questions about psychiatric disabilities and criminal justice system involvement. It begins by exploring the relationship between mental illness and violent and nonviolent criminal offending. It then considers the extent of criminal justice involvement by persons with mental illness. Causal factors and theoretical explanations for high rates of involvement in the legal system are considered next. The chapter then reviews legal–mental health intervention strategies meant to help people with psychiatric disabilities address goals related to the criminal justice system. It ends with a brief look at the few methods developed to date for helping people with mental illness when they are victims of crime.

DOES MENTAL ILLNESS LEAD TO CRIMINAL BEHAVIOR? There have been multiple studies that suggest there is an association between mental illness and criminal behavior; however, the relationship is complex. Some studies have used birth cohort designs to address this question. These studies are prospective in nature and largely conducted in Scandinavian countries, where populationwide information is routinely collected by government agencies. In birth cohort designs, data are collected at birth, before anyone is identified or labeled with mental illness, and before anyone becomes involved in the criminal justice system. Results of following people into adulthood suggest that people with severe psychiatric disorders, particularly schizophrenia, 254

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are at increased risk for both nonviolent and violent offenses (Arseneault, Moffitt, Caspi, Taylor, & Silva, 2000; Brennan, Mednick, & Hodgins, 2000; Sariaslan et al., 2020). The findings are echoed by analyses of population data in the United States. Swartz and Lurigio (2007) analyzed data from the National Survey on Drug Use and Health and found a relationship between psychiatric disorders and past year arrest; however, it was largely mediated by substance use. For nonviolent offenses, the effect of psychiatric disorder was entirely mediated by substance use (psychiatric disorder increased the likelihood of substance use, which increased likelihood of arrest); for violent offenses, the effect was partially mediated, suggesting that serious mental illness had both an indirect (via substance use) and an independent effect on likelihood of arrest for violent crimes. Thus, people with co-­occurring psychiatric and substance use disorders are at heightened risk for violent and nonviolent criminal offending. Considering violence specifically, the rate of violence among people with serious mental illness may be two to five times higher than that of their peers from the general population (Corrigan & Watson, 2005; Swanson et al., 1997), with substance use driving much of this elevated risk (Swartz & Lurigio, 2007; Fazel, Långström, Hjern, Grann, & Litchtenstein, 2009). Furthermore, studies have demonstrated the influence of nonpsychiatric individual and social–­environmental factors that influence violence risk among people with serious mental illness that also influence violence risk among the general population (Swanson et al., 2002; Swanson, 2008). Although there is a clear link in some cases between violence and serious mental illness, only 1–5% of violence in the community can be attributed to people with mental illness (Ahonen et al., 2019). Public health experts have long cautioned that the general population overestimates the degree of violence among people with serious mental illness (Monahan & Arnold, 1996). For example, population studies have shown that about 40% of members of the general public views people with mental illness as violent. Perceptions of dangerousness of people with schizophrenia are even higher, and have increased over the past few decades to over 60% of the public viewing people with schizophrenia as likely to harm others (Pescosolido, Halpern-­Manners, Luo, & Perry, 2021). Dangerousness continues to be among the most problematic stigmas for people with mental illness.

PERSONAL EXAMPLE Ken Monroe’s Pathway into the Criminal Justice System Ken Monroe, a 35-year-old Black man with a diagnosis of paranoid schizophrenia, had never engaged in long-term treatment and had had no contact with a mental health professional in over 2 years. Just prior to his entanglement with the criminal justice system, he had an exacerbation of his symptoms of paranoia. His paranoia was focused on his family and neighbors, who he thought were “out to get him.” He checked into a motel to protect himself. While there, he soon became concerned that motel guests were planning to do him harm. He started throwing objects, including books and bedding, out the windows of his second-story motel room onto the cars in the parking lot. Ken was extremely pleased when the police responded to his actions, having been called by the motel manager. His elation quickly diminished when he found that he was the one being arrested, not the other guests. He was initially charged with an obscure section of the criminal code related to projecting missiles, which he pleaded down to simple assault. However, Ken subsequently spent almost a year in jail awaiting trial.

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The question for rehabilitation providers is not whether such persons are violent or how to stop them. Rather, the task is how to help these persons meet their goals related to the criminal justice system. Violent behavior in people with serious mental illness may be exacerbated by several factors, including substance use, history of victimization, community disorganization, and lower socioeconomic status (Fazel et al., 2009; Hiday, 2006; Swanson et al., 2002; Swanson, 2008). With regard to substance use, the risk of violence is higher among persons with substance use disorders than among those with schizophrenia and other psychotic disorders (Eronen, Angermeyer, & Schulze, 1998). A history of child abuse has also been found to be associated with violent reactive behavior and criminal offending in general population studies, but this linkage has not been addressed directly in studies among persons with mental illness—even though, as a group, persons with severe mental illness have extremely high rates of abuse during childhood, as well as other types of victimization. While not differentiating violent and nonviolent criminal behavior, in a recent study Edalati and colleagues (2017) did find that among homeless adults with mental illness, exposure to adverse childhood events (ACEs) was associated with higher rates of both criminal justice system involvement and victimization. Another often-­neglected variable is that of the social conditions of the communities where persons with mental illness live. There is evidence that over time, people with serious mental illness tend to move to poorer and poorer communities, characterized by high unemployment, resource deprivation, crime, violence, drug use and police monitoring— all factors that increase risk of involvement in criminal behavior and arrest (Epperson et al., 2014; Silver, Mulvey, & Swanson, 2002). To consider these associations another way, social adversity and related risk factors may drive violence and crime for people with mental illness just as they do for people without mental illness (Skeem, Manchak, & Peterson, 2011).

PEOPLE WITH MENTAL ILLNESS IN THE CRIMINAL JUSTICE SYSTEM Prisons and jails have become the primary service providers for persons with mental illness and psychiatric disabilities. This is an important social justice issue. Overrepresentation of people with serious mental illness occurs at every level of the criminal justice system (i.e., arrest, incarceration, and probation) in the United States, as well as other countries. Rates of incarceration in prison or jail are often used to assess the extent of involvement in the criminal justice system. Research in U.S. jails and prisons suggest approximately 14% of the incarcerated population has a serious mental illness, although for females, rates as high as 31% have been reported (Parsons & Sandwick, 2012; Prins, 2014; Steadman, Osher, Robbins, Case, & Samuels, 2009). Many people with serious mental illness are under community correctional supervision as well. An analysis of the 2009 National Survey on Drug Use and Health indicates that people with mental illness are also overrepresented among probationers and parolees (Vaughn, DeLisi, Beaver, Perron, & Abdon, 2012). When people with serious mental illness become involved in the criminal justice system, there is evidence that they spend more time in jail pretrial, are more likely to be sentenced to jail or prison, serve more of their sentences, and may be more likely to be rearrested than people without serious mental illness (Comartin, Nelson, Smith, & Kubiak, 2021; Hall et al., 2019; Eno Louden, O’Manchak, Connor, & Skeem, 2015).

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Thus, people with serious mental illness are at higher risk of entry into the criminal justice system, and once they enter, they have more difficulty exiting. Co-­occurring substance abuse increases the risk for all these negative outcomes. Several states are implementing bail reforms that eliminate money bail requirements for all or certain types of charges. Under such reforms, people cannot be held in jail pretrial simply because they cannot afford to post bail. For example, New York State’s bail reform mandates pretrial release for most cases but allows judges discretion to impose cash bail or detention without bail in more serious cases (Vera, 2019). Bail reforms in other jurisdictions allow judges discretion to use preventive detention (detained without option of cash bail) for a broader range of cases. These reforms generally allow judges to impose pretrial conditions such as electronic monitoring. Bail reform has the potential to reduce the number of people with serious mental illnesses in jails, as they are often charged with minor crimes that may be ineligible for pretrial detention under some bail reform laws. However, there is substantial risk of bias that negatively impacts Black and Indigenous individuals, people of color, and people with mental illnesses in jurisdictions that afford broader discretion to judges to detain people based on risk to the public or risk of flight assessments. Police are the first point of contact with the criminal justice system, and there is evidence that police encounters with people with serious mental illness are common. It is estimated that 6–10% of all police contacts with the public involve a person with serious mental illness (Livingston, 2016; Koziarski, Ferguson, & Huey, 2022), and in the United States, almost one-third of people with mental illness have police involved in their pathways to care. Furthermore, population data suggest that over 30% of people with serious mental illness have lifetime histories of arrest (Kennedy-­Hendricks et al., 2016). It can be useful to consider the types of charges that are most common. People with serious mental illness are overrepresented on misdemeanor charges such as criminal trespass and petty larceny, which are often survival crimes associated with homelessness and poverty (Compton et al., 2023). Additionally, there is some evidence that patterns of criminal offending among people with serious mental illness may change over the life course. Compton and colleagues (2022) examined the arrest records of 240 people with serious mental illness recruited from public inpatient psychiatric facilities in Georgia. Participants’ earliest charges included marijuana possession, driving under the influence of alcohol, burglary, and shoplifting. In contrast, their most recent charges included probation violations, failure to appear in court, officer obstruction, and disorderly conduct. This suggests an important role for psychiatric rehabilitation professionals in addressing social risk factors and assisting clients in navigating their criminal justice goals. The large number of individuals with mental illness in the criminal justice system presents significant challenges for both law enforcement and correctional staff, who are generally not well trained or equipped to respond and support this population. Tragically, this puts people with serious mental illness in harm’s way. Research indicates they are at elevated risk of having force used on them, being injured, and being killed in police encounters (Laniyonu & Goff, 2021; Rossler & Terrill, 2017; Saleh, Appelbaum, Liu, Scott Stroup, & Wall, 2018). The intersection of serious mental illness and race is particularly deadly in police encounters (Shadravan, Edwards, & Vinson, 2021). In prison settings, serious mental illness increases both the risk of victimization and the odds of being sent to extended solitary confinement (Daquin & Daigle, 2018; Siennick, Picon, Brown, & Mears, 2022). In addition to the human costs, public expenditures for people with mental illness enmeshed in the criminal justice system are large (Petrila, Andel, Constantine, & Robst,

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2010). Aggregate costs of mental health and criminal justice services over 4 years in a large Florida county were $94,957,465, with a median cost per person of $15,134. Hence, it is not surprising that criminal justice officials, whose institutions are overcrowded and underresourced, feel that they are burdened with being the primary institutional providers of mental health care. Jails and prisons in the United States house more individuals with mental illness than do all of the state hospitals (Aufderheide, 2014).

THEORETICAL EXPLANATIONS OF CRIMINAL INVOLVEMENT Social scientists have posed several theories in order to make sense of the degree to which people with serious mental illness are involved in the criminal justice system. Two early theories are (1) the criminalization hypothesis and (2) the hydraulic theory of social control. 1. The criminalization hypothesis rests on the observation that persons with mental illness, who once may have been served in mental hospitals, are now entering the criminal justice system because of deinstitutionalization. People with serious mental illness that would have, in prior eras, been institutionalized in state hospitals, now live in the community, often without adequate mental health treatment. Their symptomatic behavior brings them in contact with law enforcement and the criminal justice system that define their symptomatic behaviors as criminal rather than mental health issues. Relatedly, the theory of transinstitutionalization, emphasizes the idea that services have simply moved from one institution (mental health) to another (criminal justice) (Prins, 2011). 2. The hydraulic theory of social control proposes that change in the population of one institution that serves the societal function of social control will lead to an inverse change of equal magnitude in another social control institution. In this case, the closing of state psychiatric hospitals has led to an increase in jails and prisons. Based on these early theories, one might surmise that providing mental health treatment and perhaps reopening state psychiatric hospitals would reduce the criminal justice involvement of people with serious mental illness. However, those steps may not be sufficient, or in the case of reopening state hospitals, desirable. Skeem and colleagues (2011) suggest that a plausible alternative to the criminalization hypothesis is that risk factors for criminal justice system involvement are generally the same for people with and without serious mental illness. However, serious mental illness may increase peoples’ exposure to these risk factors. Both criminological and social/personality psychology theories (items 3 and 4, below) of criminal offending may be useful to consider. 3.  Criminologically informed perspectives on offending focus on factors influencing impulsivity, self-­control, and social circumstances that influence access to economic opportunity and normative systems and institutions that promote prosocial behavior. Basically, poverty increases the likelihood of exposure to criminal activity, opportunities to engage in substance use and criminal behavior, others engaged in criminal activity, and unstructured time. The onset of serious mental illness in emerging adulthood may interrupt educational, vocational, social and economic trajectories, resulting in poverty, social marginalization, and increased risk of criminal offending (Fisher, Silver, & Wolff, 2006; Ringhoff, Rapp, & Robst, 2012).

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PERSONAL EXAMPLE Doris Cummings’s Journey through Prison Doris Cummings, a White female in her early 40s, was released from prison after serving over a year and a half for two separate charges of arson. One offense related to a dispute with a neighbor: Doris set off firecrackers over her neighbor’s patio, which resulted in a fire. The other charge stemmed from an incident while she was incarcerated, in which she set her mattress on fire in her jail cell. Doris had a diagnosis of schizophrenia, with only intermittent treatment over 15 years. She was frequently requested to leave treatment programs because of her disruptive behavior. While incarcerated, Doris refused all medication, regardless of the presence of active symptoms. She received minimal treatment in prison, because the facility had no provision for specialized housing for female inmates with mental illness. Upon discharge, Doris returned to her previous living arrangement with her mother and father. Her mother had a 30-year history of untreated schizophrenia. Because of his religious beliefs, her father was opposed to Doris’s taking prescribed medication; he believed that prayer was the answer to her and her mother’s mental health problems. At release, the parole department was unaware of her psychiatric history, so no provision for intensive supervision was made. Doris was requested to go to a local mental health agency, but she was only given a card with the name and phone number of the agency, and was told to call for an appointment. With no supervision and her father’s opposition, Doris did not go for treatment. Subsequently, Doris was rearrested on violations of her parole, including failure to comply with mental health treatment. She was later arrested on new charges that stemmed from a traffic violation; due to her erratic and bizarre behavior at her preliminary arraignment, an assault charge was added to the others. During the subsequent hearing, Doris was found sitting in the judge’s office, which she had trashed, and from which she had to be forcibly removed. Doris was sent back to prison, where she stayed until she had served her maximum sentence. She was then again released to the community, with no provision for criminal justice supervision or treatment, because she had served her full sentence.

4.  Social/personality psychology models focus on antisocial cognition (criminal thinking) and criminal associates. For example, Bonta, Law, and Hanson (1998) suggested that criminal behavior is learned by early modeling and reinforcement patterns, and maintained by a history of benefiting from criminal activity, social circumstances that encourage criminal activity, personal attitudes supportive of criminal behavior, and a personality style that finds impulsivity rewarding. People with serious mental illness may be at higher risk of being in adverse environments that expose them to the modeling and reinforcement of criminal behavior (Skeem et al., 2011). While there is indirect evidence for the criminological and social/personality perspectives as alternatives to the earlier theories, Skeem and colleagues (2011) caution against discarding the criminalization hypothesis entirely. They point to evidence of a small group (5–8%) of offenders with serious mental illness whose crimes are directly attributable to mental illness. Ultimately, the worth of these theories can be judged to the degree that they inform ways to help people achieve their criminal justice-­related goals. Epperson et al. (2014) offer a “person–place” framework (see Table 14.1) for

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TABLE 14.1.  “Person–Place” Factors Contributing to Criminal Justice Involvement Person-level factors

Place-level factors

Mental illness

Social disadvantage

Substance use disorder

Environment disadvantage

Trauma Antisocial attitudes/criminal thinking Antisocial associates School/employment difficulties Family/relationship difficulties Note. Data from Epperson et al. (2014).

considering strategies to support people with psychiatric disabilities in meeting goals related to criminal justice that incorporates elements of the alternative theories. The framework maintains that while effective and accessible mental health treatment is a necessary component of successful interventions for this population, traditional mental health treatment alone is not sufficient. Successful interventions must target multiple factors that put people at risk for criminal justice system involvement. These include person-level factors such as criminal thinking, antisocial attitudes, antisocial associates, employment problems, family/relationship circumstances, mental illness, addiction and trauma exposure. Additionally, interventions must consider place-level factors such as social and environmental disadvantage that may reduce opportunities for prosocial behavior and increase exposure to crime, violence, and police supervision. According to the framework, the impact of person and place factors on offending risk is mediated by stress and the person’s ability to cope with stress. When a person’s support system and coping strategies are overwhelmed, unhealthy coping behaviors, such as substance use and acting out, may put them at increased risk of justice system contact. Thus, although mental illness is an important variable in intervention strategies, comprehensive rehabilitation requires plans that seek to understand the individual and their lived social and geographic environment, coping skills, and support system. This opens the service provider to the broad range of strategies related to criminal justice in the light of diversity, poverty, and political alienation.

INTERVENTIONS FOR MANAGING GOALS RELATED TO CRIMINAL JUSTICE Addressing the criminal justice goals of people with psychiatric disabilities requires a collaborative effort between representatives of the criminal justice and mental health systems on the one hand, and people with lived experience and their families on the other. Interagency task forces might include representatives from mental health agencies, local jails and prisons, police and sheriffs’ departments, probation and parole departments, district attorneys’ offices, pretrial services, and district courts (Schnapp & Cannedy, 1998). Ideally, such task forces also include people representing the perspectives of people with mental illness and their families. Often task forces like these are established in response to tragic incidents between law enforcement and persons with mental illness.

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For example, a task force was created in Memphis, Tennessee, after a Black man with mental illness who was threatening himself with a knife was shot and killed by responding police officers (Perez, Leifman, & Estrada, 2003). This led to the development of the Crisis Intervention Team Model (discussed later in this section). Various interventions have emerged from such planning groups—­approaches meant to intersect at various points in the criminal justice system, from before initial police contact, court hearings, and incarceration in prisons and jails, to community reentry after incarceration. The sequential intercept model (SIM) has nicely outlined points of interception, or opportunities for interventions to keep people with mental illness from becoming more deeply involved in the criminal justice system (Munetz & Griffin, 2006). According to the original SIM, a person’s first interactions occur with law enforcement and other emergency services (Intercept 1). Interactions between police and people with mental illness can devolve into cases of serious legal infractions and arrests, initial hearings, and detention (Intercept 2). Courts may find people guilty, leading to penalties including jail, prison, or mental health forensic commitment (Intercept 3). Those who are detained in corrections or forensic commitment eventually face the challenge of community reentry (Intercept 4), where they may be supervised by community correctional staff (Intercept 5). The SIM developers emphasized that the entire process can be avoided in communities with best clinical practices: “an accessible, comprehensive, effective mental health treatment system focused on the needs of individuals with serious and persistent mental disorders” (Munetz & Griffin, 2006, p. 545). Recently, the SIM was revised to add Intercept 0, which represents an adequately funded mental health system that could prevent crises and criminal justice system contact (Abreu, Parker, Noether, Steadman, & Case, 2017). While the original model was rooted in the criminalization hypothesis, there is growing recognition of the need to develop interventions at each intercept that address both mental health and person–place needs. The justice enterprise is vast; by necessity, some parts relevant to rehabilitation practice are not discussed in depth in this chapter. These include state and federal regulations about fitness to stand trial, guilt and insanity, and civil commitment (Fitch, 2014). Although specific regulations vary by state, some generalities in each category are briefly reviewed here. Fitness to stand trial reflects the degree to which people can work with their attorneys in presenting their defense at trial and other court proceedings. Fitness is decided by competency evaluations conducted by a skilled officer of the court (typically a forensic psychiatrist or psychologist), who determines the answers to three questions: (1) Is the accused able to understand that they are in a courtroom, and to comprehend the roles of others in the courtroom (judge, bailiff, defense attorney, and prosecutors)? (2) Is the accused able to understand the charge, possible pleas (guilty or not guilty), repercussions of guilty pleas, and implications of perjury? (3) Is the accused fully able to communicate with their lawyer about all facets of the trial and related proceedings? Judges may postpone court proceedings for people deemed unfit to stand trial and remand these persons into mental health custody, so that providers can help the persons become competent for trial. Mental illness can mitigate court decisions about guilt or penalty. The Model Penal Code Test of the American Law Institute sets the criteria for a person to be judged not guilty by reason of insanity (NGRI): Because of mental disease or defect (typically a DSM-diagnosed illness), people (1) are unable to appreciate the criminality of their conduct, and (2) are unable to conform their conduct to the requirements of law. Typically, forensic psychiatrists or psychologists are hired by both the defense and the prosecution in such a case; these professionals, after reviewing the case and interviewing the

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defendant, provide their opinions about guilt and insanity. The subsequent decision about NGRI remains with the jury and judge. Contrary to popular ideas, NGRI decisions are rarely achieved in U.S. courts. People who are found NGRI may be civilly committed to the mental health system and may remain in psychiatric hospitals until their mental illness resolves and the persons are deemed safe. Several states have modified NGRI with alternatives, such as guilty but mentally ill, which more clearly establish the link between court decision and subsequent civil commitment. Fitness and NGRI are decisions of the criminal courts, which may conceivably impose penalties including prison or jail sentences. Involuntary commitment or civil commitment is a decision of the civil courts, typically leading to detention in a psychiatric hospital. Criteria for civil commitment usually include danger to self or to others because of mental illness. Civil commitment may be an option for cases that have resulted in NGRI determinations. Alternatively, civil commitment may result from decisions of community providers who are concerned that persons may harm themselves or others because of mental illness. Use of civil commitment is reduced significantly as a community mental health care option when solid rehabilitation programs, including assertive community treatment (ACT; see Chapter 8), are available to meet a person’s independent living needs. Outpatient civil commitment, often called assisted outpatient treatment (AOT) is a court-­involved strategy for managing the behavior of a person with serious mental illness and a history of violence or repeated hospitalizations and arrests. In consultation with the person and their mental health team, the judge may order the person to accomplish several goals to stay in the community rather than being involuntarily committed to an inpatient setting. Goals may include regularly taking prescribed medication and meeting with a mental health provider. Outpatient commitment is a contentious policy issue; some advocates are concerned that it may lead to unnecessary coercion.

Interventions at Police Contact Interactions with the criminal justice system typically begin with police officers. Two common-law principles govern their actions. First, the police have government-­granted power and authority to protect the safety and welfare of the community. Second, the police are granted paternalistic or parens patriae authority, which is meant to protect citizens with disabilities who cannot care for themselves, including those with serious mental illness. Acting under these principles, police officers have significant discretion in how a disruptive incident or minor crime is handled. In the absence of robust crisis services in the community, police are generally the first to respond to a mental health crisis situation. They then must identify the individual as being in need of psychiatric treatment; perhaps this results in their transporting the individual to a treatment facility, or in their making the determination that the illegal activity takes precedence and arresting the individual. As such, police officers assume the role of primary gatekeepers in determining whether the mental health or criminal justice system is the more appropriate means to meet the needs of the individual and to ensure community safety (Lamb, Weinberger, & DeCuir, 2002). Officers may also deal with such a situation informally (e.g., by attempting to calm the person), rather than moving on to court involvement. Research examining informal police responses has produced mixed findings. One study found that officers resolved over 40% of calls involving persons they identified as having mental illness informally (Watson & Wood, 2017). In the same study, officers resolved another 45% of the calls by transporting the person to a hospital, and 6% were resolved with an arrest. There is

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some evidence that mental illness may be protective, in that when officers recognize that a person has a mental illness, they may be less likely to arrest them (Engel & Silver, 2001). Police officers indicate that encounters with people with mental illness are operationally problematic, and they feel ill-­equipped to handle them (Borum, Deane, Steadman, & Morrissey, 1998; Hails & Borum, 2003). This is not surprising given limited training and resources for responding effectively. State standards for the minimum number of hours of mental health and deescalation-­related training for officers vary from 2 to 40 hours (Plotkin & Peckerman, 2017). It is important to note that training for mental health personnel about the criminal justice system is also critical, so they are able to assist their clients who have system involvement. Over the past 30 years, specialized responses have been developed to divert people to mental health services at the point of police contact. Such programs, which have been referred to as prebooking or prearrest diversion programs, are largely collaborative between mental health and law enforcement personnel (Hails & Borum, 2003). Arrests are avoided by having the police make direct referrals to mental health treatment, thereby keeping persons with severe mental illness from entering the criminal justice system (Hails & Borum, 2003). Deane, Steadman, Borum, Veysey, and Morrissey (1999) categorized specialized prebooking programs into three groups: (1) police-based specialized response that involves officers with special mental health training, who provide crisis intervention services and act as liaisons to the formal mental health system; (2) police-based specialized mental health response that occurs when departments hire mental health consultants who provide on-­location and telephone consultation to officers in the field; and (3) mental-­ health-based specialized response that occurs when mobile crisis teams from the community mental health service delivery system, through established arrangements with police departments, respond to special needs at the times of incidents. These basic program models are still in use, although, more recently, there has been increased attention to the development of robust mental health crisis systems and reducing the reliance on police as crisis responders. Many communities are implementing a continuum of response models that include crisis intervention team, co-­responder, and community responder models.

Crisis Intervention Teams One of the most widely implemented prebooking interventions is the crisis intervention team (CIT) model, a police-based specialized response model that has been adopted by more than 3,000 police forces worldwide (Cross et al., 2014; Watson & Fulambarker, 2012). The foundation of the model is partnerships between law enforcement, mental health providers, and advocates that work together to deliver CIT training and support an effective crisis response system. While all officers should have basic mental health crisis response skills, the CIT model selects officers to train and deploy who have the greatest interest, the most amenable attitudes, and the most appropriate interpersonal skills to function as the first-line responders to mental health calls (Hails & Borum, 2003). These officers complete a 40-hour course that provides information on signs and symptoms of mental illness, corresponding interventions, deescalation techniques, co-­occurring disorders, legal issues, and local resources. Another component of the model is a designated, no-­refusal drop-off, where officers can transport a person in need of care (Usher et al., 2019). As the model has gained popularity, it has been adapted to local contexts. Strong CIT programs work to maintain partnerships across law enforcement, mental health, and advocacy to support the program and enhance the crisis services.

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There is a growing body of research that suggests that the CIT model has positive impacts (Watson, Compton, & Draine, 2017). There is strong evidence that CIT training improves officer knowledge, attitudes, and endorsement of deescalation skills. Multiple studies have also found that CIT implementation and training increases transports to crisis triage centers and other linkages to care. The impact of CIT on arrests and use of force is less clear, with some researchers finding reductions and others finding no effect. Finally, the program seems to reduce criminal justice costs, although treatment costs may be higher for diverted individuals.

Co-­Responder Teams The co-­responder model pairs a clinician with a police officer to provide response to mental health crisis calls. The most widely implemented version is a police-based specialized mental health response, with the clinician riding with the officer. However, in some communities, the clinician is based at a mental health agency and responds at the request of law enforcement. While this model is rapidly gaining popularity in the United States, there is significant variation in its implementation. Some co-­response teams are directly dispatched to 911 calls, others are secondary response at the request of the first responding patrol officer, and still others to follow-up visits in the community. More recently, some co-­response teams are including paramedics and peer providers. Research to date suggests that stakeholders find the co-­responder model acceptable and preferable to police-alone response (Shapiro et al., 2015). The model may reduce unnecessary emergency department transports and increase service use following the initial contact (Puntis et al., 2018; Shapiro et al., 2015); reduce the risk of arrest (Bailey, Lowder, Grommon, Rising, & Ray, 2022) and reduce use of force in situations involving suicidal persons (Blais & Brisebois, 2021).

Community Responder Teams Demands to reduce the involvement of police, particularly in communities of color, have led many communities to develop community response models that do not include police officers. Most programs are loosely based on the Crisis Assistance Helping Out on the Streets (CAHOOTS) model that has been operating in Eugene, Oregon, since the late 1980s. Operating out of the Whitebird Clinic, CAHOOTS teams comprise a crisis worker and a medic (EMT or nurse). The teams respond to behavioral health and social-­ service-­related calls for service. Their program data suggest that 5–8% of calls for service that otherwise would have been handled by police are diverted to the CAHOOTS team. A newer community response program, Denver Support Team Assisted Response (STAR), pairs a master’s-level clinician with a paramedic or EMT to respond to low-risk calls when individuals are not in imminent risk (trespass, welfare checks, mental health crisis). In the first year of the program, STAR responded to 1,396 calls with no arrests, injuries, or calls for police backup. Examining arrest data for the 6 months before and 6 months after implementation of the STAR program, Dee and Pyne (2022) found a 34% reduction in reports of low-level crimes such as trespassing, public disorder, and resisting arrest, charges that are more frequent among people with serious mental illness. Thus, sending a social service response rather than a criminal justice response may better address people’s needs and decrease criminal justice system involvement. Community response team variations are being piloted and across the country. Some are including

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certified peer providers as part of the initial response team or to provide follow-up linkage and support.

Postbooking Diversion Programs Postbooking diversion programs divert people with mental illness to mental health care after they have been arrested. Diversion typically takes place at a court hearing and may be pretrial in the form of waived or deferred prosecution with linkage to treatment and social services, transfer to mental health court, or postadjudication in the form of specialty mental health probation (Epperson et al., 2014; Kennedy-­Hendricks et al., 2016). Postbooking diversion programs seek to connect people with services in the community and reduce criminal justice system involvement and incarceration. Accordingly, these programs have three objectives: (1) screening and identifying individuals with severe mental illness; (2) negotiating treatment plans between the mental health and criminal justice personnel; and (3) appointing staff within the criminal justice system to act as liaisons between detainees and community mental health services. Negotiated dispositions may be viewed as alternatives to prosecution, as conditions of reduced charges, or as conditions of probation (Desai, 2003). Steadman, Morris, and Dennis (1995) have listed six key features of effective diversion programs, which are indicated in Table 14.2. Some postbooking programs are court-based, such as specialty mental health courts (described in the next section), and others are jail-based. Jail-based diversion has three forms: release from jail with conditions of participating in psychiatric treatment; postponing legal proceedings for a period of time, during which the individual participates in treatment; or summary probation, in which the individual is placed on probation for a period of time instead of being incarcerated. Each of these models requires the agreement of the prosecutor, defense attorney, and judge (Gill & Murphy, 2017; Shafer, Arthur, & Franczak, 2004; Steadman et al., 1999). Several comprehensive reviews have summarized research on the impact of postbooking programs (Desai, 2003; Lange, Rehm, & Popova, 2011; Sirotich, 2009). The findings are mixed. Desai (2003) and Sirotich (2009) concluded that studies on jail-based diversion and court-based diversion showed no overall effects on subsequent rearrest records, though decreases were found for those committing low-level misdemeanors. While noting substantial methodological limitations, Lange and colleagues (2011) reviewed the literature and concluded that the evidence supports jail-based and court-based diversion,

TABLE 14.2.  Key Features of Effective Postbooking Diversion Programs

• Integration of community-level services—mental health, judiciary, and social services • Regular meetings among key players • A designated liaison or boundary spanner who manages interactions among correctional, mental health, and judicial staff

• A strong leader who has good communication skills and understands all components of all systems as well as informal networks

• Early identification of individuals who have mental health treatment needs and meet the diversion criteria

• Diversion case managers who have experience in both the mental health and criminal justice systems

Note. Data from Steadman, Morris, and Dennis (1995).

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specialty probation, and forensic assertive community treatment (FACT) as being effective for reducing recidivism and improving other outcomes.

Mental Health Courts Mental health courts are a specific form of court-based postbooking diversion (Wolff, 2002, 2003). Evolving from the perceived success of drug courts, the first mental health court was established in 1997 in Broward County, Florida. As of 2020, there were 421 adult and 56 juvenile mental health courts in the United States (Fox, Miley, Kortright, & Wetsman, 2021). Therapeutic jurisprudence has been philosophically influential in the development of these courts (Boothroyd, Poythress, McGaha, & Petrila, 2003). While there is significant variation in eligibility criteria and operation, mental health courts share several characteristics (Fox et al., 2021; Epperson, Sarantakos, Suslovic, Thompson, & Self, 2022; Loong, Bonato, Barnsley, & Dewa, 2019; Thompson, Osher, & Tomasini-Joshi, 2008): (1) a specialized mental health court docket supervised by a sitting judge; (2) judicially supervised community treatment plans supported by a team of court staff and mental health professionals; (3) regular status hearings where adherence is reviewed and incentives and sanctions imposed; and(4) defined criteria for program completion. Additionally, entry into mental health court programs is voluntary and requires participants to give up some procedural rights (e.g., a speedy trial) in exchange for the opportunity to have charges reduced, avoid a conviction altogether, and or avoid jail or prison time. Mental health courts vary in terms of eligibility criteria. While most mental health courts focus on misdemeanor and nonviolent felony cases, some mental health courts accept a broader range of cases and others only felonies. There is also variation in specific diagnoses, with some courts accepting individuals with intellectual and developmental disabilities and/or those who have experienced traumatic brain injuries (Thompson et al., 2008; Watson, Hanrahan, Luchins, & Lurigio, 2001; Wolff, 2003). Initially, these courts focused on defendants shortly after their arrest, but some courts have expanded to accept referrals from other courts, as well as from attorneys, police officers, friends, relatives, or others aware of individuals with mental illness (Goldkamp & Irons-Guynn, 2000). Some critics have raised concerns that mental health courts may be coercive or may serve as vehicles for coerced treatment (Goldkamp & Irons-Guynn, 2000; Redlich, Hoover, Summers, & Steadman, 2010). Issues of voluntariness in mental health courts are complicated by questions of an individual’s competency to comprehend and make decisions to participate, which must be determined before the individual can be a mental health court candidate (Goldkamp & Irons-Guynn, 2000). Similarly, questions have been raised about these courts’ use of sanctions for noncompliance with treatment, such as more restrictive treatment alternatives or even incarceration, and whether these mechanisms are appropriate for producing desired outcomes. One of the biggest concerns is whether mental health court procedures differ greatly from those of conventional courts (e.g., by not providing protections of due process). Several recent systematic reviews have examined the effectiveness of mental health courts. Loong and colleagues (2019) reviewed 20 studies of adult mental health courts and concluded that there is some evidence that mental health courts can reduce recidivism. They further indicate that the inclusion of case managers and access to vocational and housing services may be important elements of effective mental health courts. Fox and colleagues (2021) conducted a meta-­analysis of 30 studies of adult and juvenile mental health courts. They found a 74% reduction in recidivism associated with mental

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health court participation overall, with similar effects for adult and juvenile participants. An earlier meta-­analysis of 18 studies also reported mental health court involvement was also associated with fewer inpatient days and better overall interpersonal functioning (Sarteschi, Vaughn, & Kim, 2011).

Services after Initial Hearings: Jail and Prison Jails and prisons are ill-­equipped to provide appropriate treatment for inmates with mental illness, yet are required by law to protect and to provide at least minimal care for them. But it is estimated that one-half to three-­fourths of prison inmates with a current mental illness receive treatment in prison (Martin et al., 2018). Prison-based services may include screening, suicide prevention, medication management, group and individual psychotherapy, crisis intervention, case management, modified therapeutic community programs, gender-­specific services and transitional services (Hills, Siegfried, & Ickowitz, 2004). Despite jails being some of the largest psychiatric treatment facilities in the United States, they struggle to adequately serve people with serious mental illness. Small jails provide very little in terms of services other than screening for mental illness and suicide prevention; larger jails and prisons (those with over 1,000 inmates) tend to provide a greater array of services (Steadman & Veysey, 1997). Jail-based mental health services vary considerably and may include in-jail mental health services, advocacy for early release, discharge planning and referral, and discharge planning with follow-up (Comartin, Burgess-­Proctor, Hicks, Putans, & Kubiak, 2022). In-jail mental health services may be limited to medications, or, as in the case of the New York City Jail system, include specialized treatment units that include medication, crisis services, incentive programs, and art therapy (Ford et al., 2020). Jail-based services may also include competency restoration services (Ash et al., 2020). Discharge planning services may include inreach from community providers to facilitate linkage upon release. Overall, there is evidence that jail-based mental health services may reduce in-jail victimization and injury (Ford et al., 2020) and improve mental health treatment outcomes following release (Comartin et al., 2022). Emerging jail reform initiatives may reduce the need for jail-based mental health services, as fewer people are detained pretrial. However, some in the field have expressed concerns that this could reduce opportunities to identify and provide care to people with serious mental illness who lack access in the community or are be unhoused. Additionally, such reforms may increase demand for pretrial monitoring and services in the community.

Reentry and Community Corrections Plans that organize transitions from prison to community are essential to successful community reentry for persons with mental illness. Such services may include transition planning prior to re-entry, and support during the transition period. Several models that provide planning and support have been developed. FACT (Angell, Matthews, Barrenger, Watson, & Draine, 2014) is a version of the ACT model modified for use with people leaving correctional facilities. A recent meta-­analysis suggests that FACT programs may both increase outpatient service use and reduce in-jail days (Goulet et al., (2022). A more time limited model of support is the critical time intervention (CTI), which is focused on establishing or reestablishing connections to community supports related to housing,

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education, and employment. A randomized trial of CTI for people reentering the community found that it increased connections to community mental health services (Jarrett et al., 2012). Comparing the strategies of FACT and CTI, Angell and colleagues (2014) concluded that in communities with scarce resources, CTI may be less effective. Another promising reentry strategy is aimed at ensuring that prisoners with mental illness are enrolled in Medicaid at reentry to facilitate immediate access to care (Morrissey, Domino, & Cuddeback, 2016; Wenzlow, Ireys, Mann, Irvin, & Teich, 2011). A systematic review of reentry interventions for this population concluded that while there is good evidence that interventions aimed at the prison to community transition can improve health insurance coverage and connections to mental health services in the community, however, there is less evidence that these interventions are effective for reducing recidivism (Hopkin, Evans-Lacko, Forrester, Shaw, & Thornicroft, 2018). More recent reentry interventions are being been developed to focus on addressing both mental health needs and risks for criminal behavior (Morgan, Scanlon, & Van Horn, 2020; Barrenger, Kriegal, Canada, & Blank Wilson, 2021).

VICTIMIZATION OF PERSONS WITH PSYCHIATRIC DISABILITIES People with psychiatric disabilities are involved in the criminal justice system as victims, too. Indeed, an important epidemiological study showed that people with serious mental illness were from 6 to 23 times more likely than members of the general population to be victims, depending on the crimes (Teplin et al., 2005). Since then, two comprehensive reviews have yielded similarly sobering statistics. Maniglio (2009) reviewed nine studies, with a total of more than 5,000 participants, and showed that people with serious mental illness were up to 140 times more likely to be victims of crime than a comparison sample representing the general population. A second review of 15 studies showed that between 73 and 87% of people with serious mental illness who were homeless reported being victimized by crime (Roy, Crocker, Nicholls, Latimer, & Ayllon, 2014). Victimization was worse among females with serious mental illness, and among people with a history of child abuse, alcohol abuse, or other drug abuse. These data clearly show that resolving the challenges of victimization is a major need for people with mental illness. Ironically, although victimization is a greater issue than perpetration, programs for the latter are much more common than programs for victimization.

HELPING VICTIMS OF CRIME Given the high rates at which people with psychiatric disabilities are victimized by crime, it is a bit surprising to see no rehabilitation programs that tackle the needs of this group. Still, there is significant research on ways to help victims of crime generally, and some of these strategies may have value in developing and testing programs for victims with serious mental illness. One review of the literature has distinguished informal from formal approaches to seeking help after being victimized by crime (McCart, Smith, & Sawyer, 2010). Its results suggest that people are more likely to seek informal than formal approaches to help. Formal help includes interventions that help people navigate law enforcement and the courts after a crime. Mental health services may also be important formal services; these may include exposure therapy, cognitive therapy, stress inoculation training, and pharmacological treatment (Hembree & Foa, 2003). Medical care may be

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a third important source of formal help. A trained support person is often an excellent ally to help the crime victim navigate these different services. Informal help seeking may include seeking the support and protection of family and friends; faith-based communities are beneficial for many victims as well. These programs may incorporate a framework of restorative justice, which seeks to address the needs of both victims and offenders (Sherman & Strang, 2007). Restorative justice often involves a dialogue in which victims share the harm done by the crime, and offenders are encouraged to take responsibility and make amends. Interesting examples of restorative justice include victim–­offender mediation and restorative conferencing (which involves a circle of family, friends, and community leaders gathered to consider the interests of all stakeholders). Just as in rehabilitation planning, choices about help seeking after victimization need to be driven by a person’s goals and resources. Crime victims often experience trauma related to victimization. People with psychiatric disabilities are at increased risk of victimization, and trauma histories are ubiquitous among those that are justice system involved (Thordarson & Rector, 2020). The principles of trauma-­informed care (TIC) discussed in Chapter 3 are highly relevant to working with people with psychiatric disabilities, who may exhibit trauma-­related behaviors that bring them in contact with police, community correctional services, and incarceration, creating a cycle of ongoing retraumatization. Psychiatric rehabilitation services that attend to SAMHSA’s (2014) six key principles of TIC (safety; trust and transparency; peer support; collaboration and mutuality; empowerment, voice and choice; and cultural, historical, and gender issues) may interrupt this cycle and support a person’s pursuit of their goals while reducing ongoing exposure to trauma.

SUMMARY AND CONCLUSIONS Currently, far too many people with severe mental illness become entangled in the criminal justice system and have difficulty exiting it. As the mass media have focused more attention on this population, public policymakers have put more resources into the development of new interventions to address the needs of the population, but much work remains to be done. Research indicates that interventions need to address both mental health needs and factors that increase risk of criminal behavior. Mental health providers need to have an understanding and knowledge of this system so that they can assist their clients in navigating it. People with mental illness in the criminal justice system need more than additional pairs of eyes monitoring them with minimal treatment. They also need more than traditional mental health services. They need meaningful rehabilitation, including cognitive rehabilitation, social skills training, and supported employment, so that they have the tools to be reintegrated into the community and engage in prosocial behaviors.

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Physical Health and Wellness

I

ndividuals with serious mental illnesses have high rates of medical illness leading to early death (Corrigan & Ballentine, 2021). We begin by reviewing research on the depth and breadth of health and wellness challenges experienced by this group. We then summarize two sets of factors that explain this problem: (1) those that represent direct and indirect effects of the disease per se, of its symptoms, and its dysfunctions, or (2) those reflecting social determinants and disparities of health. Each of these sets suggests strategies that people and their health care teams might avail to meet individually defi ned health and wellness goals.

INCREASED MEDICAL ILLNESS AND EARLY DEATH People with psychiatric disabilities have been found to have inordinate rates of cooccurring physical illnesses that worsen disabilities or lead to death (Corrigan & Ballentine, 2021). They have higher incidence and prevalence of cardiovascular and respiratory illnesses (Correll et al., 2017; Das-Munshi et al., 2017), gastrointestinal disorders (Eaton et al., 2006; Garakani et al., 2003), neurological disorders (Cremaschi et al., 2017; Kridin, Hundt, Ludwig, Schonmann, & Cohen, 2022), endocrine and immunity-related disorders (Kridin et al., 2022; Misaki, Bodurka, & Paulus, 2022), urinary/reproductive disorders (Bargiota, Pelekanou, Tsitouras, & Koukoulis, 2013; Kessing, Vradi, & Andersen, 2015), and muscular/skeletal conditions (Fratto & Manzon, 2014). As a result, people with serious mental illnesses are hospitalized for physical health problems at much higher rates than persons in the general population (Mai, Holman, Sanfilippo, & Emery, 2011). They overutilize emergency rooms both in response to exacerbated chronic conditions (Hackman et al., 2006; Nossel et al., 2010) and for relatively benign primary care evaluations (Kêdoté, Brousselle, & Champagne, 2008). Individuals with serious mental illness are also vulnerable to early institutionalization (Bartels, 2004); that is, they enter nursing homes several years earlier than counterparts without mental illness. Medical problems (especially those that are undetected) exacerbate mental health conditions (Dixon, Postrado, Delahanty, Fischer, & Lehman, 1999; Felker, Yazel, & Short, 1996). Finally, people with serious mental illness experience high levels of early death. On average, people with serious mental illness have a 20% shorter lifespan than those in the general population 270

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(Baxter et al., 2016; Chesney, Goodwin, & Fazel, 2014; Laursen, Musliner, Benros, Vestergaard, & Munk-Olsen, 2016; Oakley et al., 2018; Walker et al., 2015).

REASONS FOR MEDICAL ILLNESS AND IMPLICATIONS FOR HEALTH CARE In Table 15.1, we divide causes of high rates of medical illness and death into those representing secondary disease effects of mental illness and the effects of disparities; note that these latter variables were more thoroughly unpacked in Chapter 4. In the remainder of this chapter, we review each set of causes, followed by strategies that rehabilitation providers, and the entire service team, might implement with people to address their health and wellness needs.

MORBIDITY AND MORTALITY THAT RESULTS FROM THE MENTAL ILLNESS PER SE We divide many of these causes of health and wellness concerns of people with psychiatric disabilities into three groups: (1) those representing biological impact: genetic and other factors due to chronic physiological impact; (2) specific health-­related problems stemming from the cognitive and/or social disabilities of serious mental illness; and (3) results from unintended or other negative effects of treatment.

TABLE 15.1.  Causes of Medical Illness and Early Death Disease, symptoms, and disabilities Direct biological impact

• Co-­occurring genetic vulnerabilities • Allostatic load The result of social and cognitive disabilities • Diminished health literacy and self-­management skills • Diminished social support • Modifiable health behaviors Unintended treatment and system effects • Medication and other treatment side effects • Loss of decisional autonomy • Physical versus mental health care silos Social determinants that interfere with service engagement Services and settings • Unavailable or inaccessible services. • Missing entitlements Providers • Lack of diverse service provider workforce • Lack of cultural competence and humility Interventions • Health care models dominated by Western majority culture

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CONCERNS REPRESENTING DIRECT BIOLOGICAL IMPACT Many of the physical health conditions comorbid with mental illness are directly due to physiological mechanisms of the disorder and/or to its chronic course.

Co-­Occurring Genetic Vulnerabilities The genetic sequelae of serious mental illness may be associated with health and functioning challenges related to other organ systems. This is demonstrated through genomewide association (GWA) studies that identify common genes shared by two or more conditions (Tam et al., 2019). For example, a meta-­analysis of GWAs showed shared gene candidates that define disease pathways of major depression and cardiovascular disease (Amare, Schubert, Klingler-­Hoffmann, Cohen-Woods, & Baune, 2017). In other words, some people who are genetically vulnerable for certain psychiatric disabilities might be similarly vulnerable for specific medical illnesses.

Implications for Health Care Knowledge of genetic links between mental and physical illnesses might inform prevention protocols that guide people and their care providers to be vigilant to early signs of illness (Khoury, 2018). Early intervention improves outcome. As always, specific goals and related actions for genetic counseling and monitoring are driven by the person with psychiatric disability. However, people and providers need to be aware of the risks of health geneticization; namely, public perspectives about the hereditary basis of illness leads to worse perceptions of seriousness and prognosis for both the mental and the physical disorder (Lebowitz & Appelbaum, 2019).

Allostatic Load Allostatic load represents the cumulative burden of chronic stress and life events (Mc­Ewen & Stellar, 1993) that lead to worse health in general, as well as specific problems in varied organ systems, including cardiovascular disease (Offidani, Rafanelli, Gostoli, Marchetti, & Roncuzzi, 2013; Porcelli, Laera, Mastrangelo, & Masi, 2012), diabetes (Steptoe et al., 2014), and cancer (Ruini, Offidani, & Vescovelli, 2015). Depression, anxiety, and other distressing symptoms significantly add to allostatic load and hence worsen health in people with recurring psychiatric symptoms; the negative impact of these symptoms worsens when prolonged over the course of a person’s life or are relatively prominent.

Implications for Health Care Strategies that help people accomplish personal goals reduce life burden and hence allostatic stress. Specific stress management programs will likely diminish allostatic load; many of these are reviewed in Chapter 7. Research has revealed that specifically wellness-­ oriented approaches seem to lessen allostatic stress, including exercise (Forrester, Leoutsakos, Gallo, Thorpe, & Seeman, 2019; Sylvia, Ametrano, & Nierenberg, 2010) and social support (Seeman, Singer, Ryff, Dienberg Love, & Levy-­Storms, 2002).

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THE RESULT OF SOCIAL AND COGNITIVE DISABILITIES The cognitive dysfunctions and social challenges of serious mental illness may lead to health problems by diminishing (1) health literacy and (2) the social support system needed to navigate the care system, which (3) leads to modifiable health risks (e.g., smoking, poor diet, and unsafe sex).

Diminished Health Literacy and Self-­Management Skills Health literacy reflects comprehension of health and wellness conditions and the interventions meant to enhance corresponding goals (Andrus & Roth, 2002; Berkman, Davis, & McCormack, 2010). For example, people are better able to engage with health care providers when they understand how a variety of tangible symptoms suggest a health condition worth acting on (e.g., prolonged pain, stiffness, swelling, and redness in the knee that does not follow a discrete injury may imply an arthritic condition). Literacy also means knowledge of intervention options; the goal here is not so much for people to decide for themselves how to address arthritis per se but to have some appreciation of possibilities, so they can engage providers in treatment planning (Amalraj, Starkweather, Nguyen, & Naeim, 2009; Davis, Williams, Marin, Parker, & Glass, 2002). People with health literacy are better able to self-­manage health concerns (Mackey, Doody, Werner, & Fullen, 2016). Research suggests people with serious mental illness have less mastery of health knowledge and skills compared to the rest of the population (Clausen, Watanabe-­Galloway, Baerentzen, & Britigan, 2016; Kelly et al., 2021). They have especially low health literacy scores in appraising health information, navigating the health care system, and discerning good health information (Degan et al., 2019). Many people with serious mental illness are also less able to recognize experiences that suggest a remediable health condition (Hahm & Segal, 2005) or have little confidence that “health” conditions can be effectively impacted (Brunero, Lamont, & Coates, 2010). Social and cognitive disabilities seem to directly undermine understanding health conditions and corresponding treatments, as well as skills needed to self-­manage health and health care (Friedman et al., 2019).

Implications for Health Care Kelly and Brekke (2021) organized knowledge and self-­management skills into five sets that psychiatric rehabilitation providers might use to facilitate health goals: 1.  Self-­monitoring and prioritizing health: Self-­monitoring is commonly used in counseling to help people manage health behaviors by building awareness of focal behaviors through systematic observation and recording (Abraham & Michie, 2008; McAlister, Perry, & Parcel, 2008; Porter et al., 2016). Self-­monitoring has been shown to enhance benefits of healthy eating and physical activity programs (Michie, Abraham, Whittington, McAteer, & Gupta, 2009). Accuracy in self-­monitoring combines understanding target behaviors (e.g., what the behavior entails) with skills to record and make sense of information (National Research Council, 2004; Porter et al., 2016). 2.  Self-­ efficacy and self-­ management skills: People with a sense of self-­ efficacy regarding their health goals are more likely to approach these goals (Cramm & Nieboer, 2012; O’Leary, 1985). Chapter 7 reviews self-­management skills that might be easily

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adapted for health goals. Many management skills programs reflect a specific focus on modifiable health behaviors; these are reviewed in the next section. 3.  Coping skills: These include the stress management skills discussed earlier in terms of allostatic load. 4.  Medication and treatment engagement skills: These are outlined in the next section in terms of ways to address unintended negative effects of treatments. 5.  Communication and interpersonal relationships skills: Limitations in social support are discussed in the next section as a major barrier to health goals.

Prevention Skills Prevention begins when people monitor health concerns that might suggest subsequent, serious health problems on which they may wish to focus with their health care team. Figure 15.1 provides one example of a self-­checklist. Consistent with national guidelines, prevention varies by age groups and is presented here roughly as 25-year cohorts (Complete Guide to Annual Health Screenings by Age | Columbia NPG, 2020; U.S. Preventive Services Taskforce, n.d.; Blue Cross Blue Shield Minnesota, n.d.). The checklist varies from traditional measures of weight, blood pressure and cholesterol, and immunization history to modifiable health risks related to sexually transmitted disease, alcohol/other substance use, and domestic violence. The prevention checklist is additive; questions for those between 40 and 64 years old includes the first batch in the checklist plus additional concerns related to vaccinations and colorectal screening. Questions for each cohort also focus on prevention concerns specific to gender (e.g., cervical cancer screens or testicular exams). Checklists like these end with next-step considerations. These include explicit deliberation on whether specific concerns should be voiced to health care providers, who on the team, and when? Clinic visits with one’s healthcare provider might lead to referrals for tests, specialized treatment providers (e.g., gynecology or neurology), or medication prescriptions After-­appointment follow-ups should be regularly reviewed including working with the provider team to interpret tests and evaluate impact of treatments and therapies.

Diminished Social Support Diminished social support is a noticeable barrier to many of the goals of people with psychiatric disability (Dalgard, Bjørk, & Tambs, 1995). Social support is complex and has evolved beyond simple ideas of size of support network (“How many people can you count on when you need assistance?”) to making sense of perceptions and experiences of social exchange between people (Shumaker & Brownell, 1984) and grounding individual support exchanges within the broader social network and climate (Langford, Bowsher, Maloney, & Lillis, 1997). Social support has been viewed as a buffer to life adversity including allostatic load (Alloway & Bebbington, 1987). Disability’s impact on social support seems to lessen both the interpersonal and instrumental systems needed to manage health and engage in health care.

Implications for Health Care Kelly and Brekke (2021) sought to unpack the support network relevant to individual health goals by including health care provider teams, family members and caretakers,

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Please check each one that is a concern for you or that you might want to discuss with your health care team. 18–39 years old     Weight and height     Blood pressure     Cholesterol check (every 5 years)     Skin check (suspicious lesions or moles)     Tuberculosis testing     Diabetes screening (and foot care)     Chronic pain (e.g., dental, joint/arthritis)     Immunizations and vaccines (e.g., tetanus, flu, and covid vaccines)     Sexually transmitted disease (STD; depending on lifestyle or personal request)     Contraceptive methods counseling (including for protections from STDs)     Healthy eating counseling     Interpersonal and domestic violence counseling     Tobacco use     Alcohol use     Other drug use     Depression screening Gender-specific screenings     Cervical cancer screening (Pap smear every 3 years)     Human papillovirus (HPV) vaccine (if not received earlier)     Breast exam (self-exam monthly, by primary care provider annually)     Testicular exam 40–64 years old (in addition to concerns of 18- to 39-year-olds):     Shingles vaccine     Flu shot     Colorectal screening and maybe colonoscopy     Osteoporosis screening (bone density)     Lung cancer screening     Noticeable chest pain Gender-specific screenings    Mammogram     Pelvic exam     Prostate exam 65 years and older (in addition to concerns of 18- to 64-year-olds):     Pneumonia vaccine     High-dose flu vaccine     Accidental fall prevention screening

FIGURE 15.1.  Checklist for prevention and annual checkups. Based on Chicago Health Disparities Center (2020).

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and others in one’s community (e.g., faith-based support). Interpersonal skills training may help individuals to better interact with their support network, but the provider team must also master communication skills so they can more effectively engage with the person. In addition, strategies that enhance the person’s support system more broadly (e.g., family and friends) add to the ability for people to meet their needs. Chapter 17 reviews the additional benefits of peer services and support related to health.

Modifiable Health Behaviors Problems with allostatic load, diminished health skills, and weakened social support may result in modifiable health behaviors among people with psychiatric disabilities. These include smoking, substance abuse, low physical activity, and poor diet (Corrigan & Ballentine, 2021; Deakin et al., 2010), which are significant risk factors for obesity, high cholesterol, Type 2 diabetes, and cardiovascular disease (Cimpean, Torrey, & Green, 2005; Corrigan & Ballentine, 2021). Research has especially examined impact of weight gain and diet on people with serious mental illness (Hoerster & Young, 2021). Epidemiological research suggests, for example, that 25–60% of people with bipolar disorders meet criteria for obesity), as do 30–70% of people with schizophrenia (Catapano & Castle, 2004; Dickerson et al., 2006). Type 2 diabetes is approximately twice as prevalent (15%) among people with schizophrenia as in the general population in the United States (Dixon, McDaid, Knapp, & Curran, 2006). Another modifiable health risk is elevated rates of addictions, including high rates of nicotine dependence. About half of people with serious mental illnesses have a substance use disorder (Regier et al., 1990) with rates of nicotine dependence even higher (Dalack, Healy, & Meador-­Woodruff, 1998; Ziedonis, Kosten, Glazer, & Frances, 1994). These addictive behaviors predispose individuals to several medical problems, including cancer, chronic respiratory diseases, and serious infections. People with serious mental illness and addictions may also be more likely to engage in behaviors such as sharing needles with other drug users and having unprotected sex with multiple partners, both of which increase the risk of HIV and other blood-borne viral infections (Corrigan & Ballentine, 2021; Rosenberg et al., 2001).

Implications for Health Care Changing behaviors of any kind generally involves altering attitudes, skills, and supports. These targets may be used in relation to helping people reduce substance abuse, cease smoking, improve diets, increase exercise, enhance medical self-care, and eliminate dangerous behaviors. We next discuss efforts to address inactivity, poor diet, and obesity among persons with psychiatric disabilities, and to help them reduce or eliminate smoking. INACTIVITY, POOR DIET, AND  OBESITY

Many experts recommend exercise and dietary counseling for people with serious mental illness (Green, Patel, Goisman, Allison, & Blackburn, 2000; Hoerster & Young, 2021). A report by the Agency for Healthcare Research and Quality led to three specific recommendations: 1.  Dietary therapy: An individually tailored diet that attempts to create a deficit of 500–1,000 kcal/day for at least 6 months is recommended, though goals may change

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by gender, with men seeking higher targets. Total fats should account for less than 30% of daily calories. The impact of dietary therapy is directly related to the amount of time people spend with dietary professionals during the 6 months. 2.  Physical activity: This, when paired with diet changes, can lead to weight loss that is maintained over time. Physical activity regimens must be implemented with care for people who live sedentary lives; they might unintentionally cause physical injury and so should be supervised by trained facilitators. Guidelines suggest that people should begin with short-­duration, relatively low-­intensity activities (e.g., gardening or walking), then transition to longer-­duration, moderate-­intensity activities such as walking distances or cycling. 3.  Lifestyle adaptations: Diet and activity change can be difficult given the sedentary lifestyles and diet habits of many people with obesity. Activity needs to be strategically woven into daily life, so that costs of engaging in exercise are not excessive. Dietary therapy needs to consider available foods. Lifestyle adaptations are especially relevant to weight interventions for people with minority ethnic backgrounds (Seo & Sa, 2008). One especially notable intervention combines the strengths of many of these approaches (Casagrande, Fradkin, Saydah, Rust, & Cowie, 2010; Daumit et al., 2013). The behavioral weight loss intervention (BWLI) is based on a strategic integration of CBT and principles of psychiatric rehabilitation, and rests on six core components: (1) self- ­monitoring via weigh-ins and food/exercise tracker logs; (2) goal setting, feedback, and problem solving with motivational interviewing; (3) social support through group diet and exercise sessions; (4) skills training, including discrete in-home strategies to meet diet and exercise goals; (5) environmental supports, with hands-on exercise and nutrition experiences; and (6) environmental reinforcements, such as incentives for participation and homework completion. BWLI consists of a 6-month initial intervention phase followed by 6-months of maintenance. BWLI adapts basic weight loss therapies to several of the previously mentioned special issues for people with serious mental illness (Cabassa, Ezell, & Lewis-Fernández, 2010; Faulkner, Larkin, Claflin, & Brooks, 2007): (1) Cognitive and interpersonal disabilities: Ways to address these disabilities include skills training strategies developed for psychiatric rehabilitation (Corrigan & Liberman, 1994), self-­monitoring, environmental prompts, and contingency management; (2) Self-­determination: BWLI incorporates the two key strategies of SDM and motivational interviewing, described in Chapter 7; (3) Relapse management: Many people with serious mental illness experience symptom exacerbations that may challenge participation in weight loss programs. BWLI facilitators adjust participation expectations as individuals report recurring symptoms. Moreover, they are trained to deal with distress that might recur, including interacting with a person’s broader mental health team as necessary. Participants may also take “vacations” from the program when needed. SMOKING

Helping people with mental illness to overcome alcohol and drug abuse is discussed in Chapter 16. In this section, we target smoking cessation. This is a seriously neglected area given that 60–80% of people with serious mental illness are addicted to nicotine. Research generally shows that people with serious mental illness are less likely than others to try to quit smoking, and that those who do try are only half as successful as

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other smokers (Corrigan & Ballentine, 2021; Ziedonis & George, 1997). Nevertheless, many do quit (Peckham, Brabyn, Cook, Tew, & Gilbody, 2017; White, Stone, Murphy, Daumit, & McGinty, 2023). Controlled trials of smoking cessation interventions support the use of bupropion (Evins et al., 2005) and nicotine replacement therapies (Chou, Chen, Lee, Ku, & Lu, 2004). Less well-­controlled studies support clozapine (George, Sernyak, Ziedonis, & Woods, 1995) or nicotine nasal spray (Williams, Ziedonis, & Foulds, 2004). Psychosocial interventions have also been used to address smoking habits among people with serious mental illness, although most of these have not been as successful as pharmacological approaches.

UNINTENDED TREATMENT AND SERVICES EFFECTS Treatments provided to people with psychiatric disabilities often have unplanned results that worsen health. We discuss three of these here.

Medication and Other Treatment Effects The side effects of psychiatric medications have significant negative impact on physical health (De Hert, Detraux, & Vancampfort, 2018). Prominent here are weight gain and obesity (Correll, Detraux, De Lepeleire, & De Hert, 2015; De Hert et al., 2011), which can have secondary effects related to diabetes (Correll et al., 2015; Zhang et al., 2017), and cardiovascular disease (Hagen et al., 2017). In addition, psychiatric medications may have adverse effects on triglycerides and cholesterol, which can also cause heart conditions (Buhagiar & Jabbar, 2019). Medications have also been associated with pneumonia risk (Kuo et al., 2013; Yang et al., 2013). Side effects are noted for antipsychotic medication, antidepressants, and mood stabilizers (De Hert et al., 2011).

Implications for Health Care People with psychiatric disabilities and their health care providers may avail themselves of several strategies that diminish negative medication effects (De Hert et al., 2011; Maj et al., 2020). Primary care and psychiatric visits should include discussion of signs of health problem due to medications. This can be augmented by regular measurement of weight and blood pressure, being vigilant to significant changes that may suggest corresponding intervention. These minimally invasive assessments may be enhanced with finger pricks that yield glucose levels or blood tests assessing lipids. Lithium levels may be especially advantageous given the frequent health effects of the drug. The health care provider needs to then fully explain findings and options that might resolve these concerns, including stopping medication, decreasing dose, or moving to alternative drugs. Health risks may be alleviated by changing medications when warning signs appear; for example, when weight gain exceeds 5% during the first few months of starting a medication (American Diabetes Association, APA, American Association of Clinical Endocrinologists, & North American Association for the Study of Obesity, 2004). Other helpful steps include avoiding multiple medications. Even with optimal medication management, however, all medications have risks of side effects; therefore, attention to lifestyle changes (e.g., addressing diet and exercise) is critical.

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Once again, providers need to make sure consideration of medication decisions do not echo erroneous assumptions reviewed in Chapter 9, namely, “not adhering” represents personal failure related to psychogenic resistance. Medication decisions are best understood as a psychological process described by the theory of planned behavior (Ajzen, 1991). Behavioral intentions related to specific targets (e.g., medications) result from the interaction of attitudes about the targeted behavior, subjective norms about the behavior, and perceived control. While subjective norms might favor psychiatric medications, the final decision depends on the individual’s analyses of combined inputs. There is no a priori assumption that medication is or is not the correct decision for individuals with psychiatric disability more specifically.

Loss of Decisional Autonomy In Chapter 3, we reviewed the insidious concepts of compliance and adherence as they undermine recovery and self-­determination. This often led clinicians wrongly to believe that people with serious mental illness are incapable of making correct treatment decisions. Such a perspective undermines partnerships between person and provider, thereby worsening benefits individuals might receive from treatment.

Implications for Health Care SDM, more fully reviewed in Chapter 7, is an essential skill for promoting decisional autonomy.

Stigma Held by Health Care Providers Attitudes such as noncompliance and incompetence lead to an additional negative consequence caused by the health care system (reviewed in Chapter 2); that is, primary care providers fail to believe health concerns voiced by people with lived experience (Jones et al., 2008; Thornicroft et al., 2007; Rojas Vistorte et al., 2018). As a result, these providers fail to offer the breadth of services appropriate for individual concerns, including not referring clients to specialty services that are better able to address these concerns.

Implications for Health Care The stereotypes and prejudice endorsed by health providers that decrease health options is a form of public stigma. In Chapter 6, we contrast the impact of education versus contact approaches to public stigma change, with research suggesting contact has longer and more enduring effects. Mittal and colleagues (2020) tested the impact of contact versus education on changing primary care provider attitudes about people with mental illness leading to improved quality of care. In the contact condition, a “physician peer” in recovery shared their lived experience with serious mental illness, followed by an interactive discussion with the audience. Participants in the comparison group attended a PowerPoint presentation about serious mental illness, stigma, and its effects on health care. Although results failed to find significant difference in impact of contact versus education, qualitative feedback was encouraging. Still, this study suggests directions the health care field might pursue to diminish stigma and improve service.

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Siloed Mental Health and Physical Health Services Studies also show that people with serious mental illnesses do not receive high-­quality medical care, because medical and mental health services are not integrated (Felker, Yazel, & Short, 1996). For example, one study found that only 50% of people served by community mental health centers had a regular non-­psychiatrist doctor (Crews, Batal, Elasy, Casper, & Mehler, 1998). Approximately 50% of psychiatric service recipients have known medical problems that need further evaluation or treatment, and another 35% suffer from previously unidentified medical problems that need further evaluation or treatment (Felker et al., 1996). Even among homeless people, those with serious mental illness tend to receive less medical care than others (Folsom et al., 2002). People with serious mental illness are also less likely to receive needed specialized medical procedures, such as cardiac interventions following heart attacks (Druss et al., 2000). One reason is that physical health care providers often view mental health versus the rest of physical health as unrelated and segregated. This difference, by the way, is not observed anywhere else in medicine (e.g., cardiology, neurology, and obstetrics) able to integrate services, and primary care providers coordinating the intervention team as a whole. This is additionally problematic given that mental health versus the rest of physical health services is provided by separate clinics and providers, separate silos (Kathol, Butler, McAlpine, & Kane, 2010; Rollins et al., 2017). Researchers and innovators have generated a variety of approaches for integrating mental and physical health teams and clinics (Druss & von Esenwein, 2006; Rodgers et al., 2018; Wells, Valverde, Ustjanauskas, Calhoun, & Risendal, 2018).

Implications for Health Care We review four ideas for bringing mental and physical health providers together in a fairly seamless fashion: 1.  Expanded medical care by mental health practitioners. In this model, psychiatrists and nurses within mental health clinics routinely monitor and manage medication with physical health side effects. Their role might be expanded to encompass more primary medical care and particularly prevention services, such as immunizations, blood pressure checks, and interventions for obesity and smoking (Carney, Yates, Goerdt, & Doebbeling, 1998; Dobscha & Ganzini, 2001). Pilot programs have attempted to involve psychiatrists as primary care physicians in this way (Silberman, Lu, & O’Neill, 1994; Wulsin, 1996). 2.  Specialized primary care clinics. Specialized primary care clinics for people with serious mental illnesses have been set up in several large metropolitan areas. For example, outpatient primary care clinics staffed by internal medicine specialists in Denver exclusively served people with serious mental illness (Crews et al., 1998). Case managers initiate referrals and are then followed by internists who send complete medical plans to the mental health staff after each visit. Evidence suggests that coordination, transportation, and follow-up continue to be problematic in this arrangement, but that medical care was somewhat improved (Crews et al., 1998). 3.  Medical care teams within mental health clinics. Another approach is to co-­locate the mental health team with general medical care (i.e., to locate them in the same setting). Felker, Workman, Stanley-Tilt, Albanese, and Short (1998) describe a multidisciplinary,

15.  Physical Health and Wellness 281 

primary care team located within a Department of Veterans Affairs psychiatric clinic. In this model, the treating psychiatrist became a member of the larger medical care team. Results included better communication among medical staff, mental health staff, and service recipients; higher service satisfaction; and identification of at least one new medical problem that warranted further evaluation or treatment in 56% of participants. In a separate RCT of co-­located/integrated treatment, the group in integrated care was more likely to receive primary care and preventive interventions, to report improvements in physical health, and to avoid medical emergencies (Druss, Rohrbaugh, Levinson, & Rosenheck, 2001). 4.  Patient-­centered medical homes (PCMHs). PCMHs are perhaps the best developed approach to bridging silos built around the fundamental principles in Table 15.2, summarized by the Agency for Healthcare Research and Quality (AHRQ; 2022). Specifically, PCMHs provide a one-stop, person-­centered clinic offering services across the range of mental and physical health needs (Corrigan & Ballentine, 2021). Services are accessible when needed, based on the same standard of quality and safety that permeates the status quo of modern health care. Research has shown that PCMHs lead to improvements in treatment experience, decreases in hospital stays and emergency department use, and enhanced preventive care (Corrigan & Ballentine, 2021). PCMHs also have systemic effects leading to diminished provider burnout and cost savings.

SOCIAL FACTORS THAT INTERFERE WITH SERVICE ENGAGEMENT In Figure 15.2, we distinguished health concerns that arise directly from the illness with social determinants of health. We believe the impact of social determinants on physical health may be as great as or greater than those that occur from the disease and treatment system per se. Specifically, we argue that engagement, or lack thereof, in the health care service system related to social determinants is a significant cause of health concerns; this is a variation on the model of disabilities, services, and equity in Figure 4.1 of Chapter 4. Briefly, in this section we recap barriers to service engagement related to diversity and social disadvantage, then develop some evidence-based ways to address them. An

TABLE 15.2.  Key Features to Patient-­Centered Medical Homes as Based on Definitions of the Agency for Healthcare Research and Quality Patient-­c entered: A partnership among stakeholders (e.g., people with lived experience, healthcare providers, and family members) that centers all treatment decisions around the person’s priorities. This includes providing education and support to all stakeholders so they are readily able to join in this partnership. Comprehensive: A coordinated team of health care providers who addresses the breadth and depth of individual health concerns. Accessible: Patients are able to access services when needed which may include state-of-the art communications, 24/7 services, and short wait times. Committed to quality and safety: Monitoring quality improvement is essential to yield safe and competent care. Note. Adapted from Agency for Healthcare Research and Quality (2021). Copyright © 2021 Agency for Healthcare Research and Quality. Adapted by permission.

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abridged version of barriers is summarized in Figure 15.2 for this purpose. These are framed in terms of where health care services are provided, by whom, and with what service guidelines.

Where Are the Health Services? Services and settings in many communities are lacking despite research on evidence-based interventions that address the health needs of diverse groups with disabilities. In part, lack of available and accessible services represents policy failure; government and other responsible entities need to identify health care deserts in order to develop both brickand-­mortar and service systems that meet local needs. Of equal importance is navigating the status quo, the existing fragmented system. Community health workers (CHWs), have significant potential for advancing the health needs of diverse groups with psychiatric disabilities (Kim et al., 2016; Logan & Castañeda, 2020). CHWs are indigenous members of diverse communities trained to provide support, education, and care coordination to improve health and wellness among people with disabilities in their community. Although CHWs vary in terms of paraprofessional and professional backgrounds, their work is guided by cultural relevance and in-the-­community services (Wells, Valverde, et al., 2018).

Peer Health Navigators Peer health navigators (PHNs) evolved from a narrower class of CHWs called patient navigators, who were trained CHWs that specifically escorted and supported patients through multiple levels of clinics, services, and entitlements. Successful patient navigators essentially interfaced between patients and the overwhelming number of other “service” providers, including the physician or nurse practitioner leading the treatment team, ancillary diagnosticians and treatment specialists, behavioral health care providers, hospice and palliative care workers, community support services, and faith-based ministry. Patient navigators evolved into peer navigators in cancer care when navigators were recruited from previous cancer patients who were also ethnically diverse. Patients of color reported emotional support, “being there,” and “feeling heard” as essential elements of successful peer navigators, those with whom they shared ethnicity (Sheehan, Ballentine,

Where

Who Services and Settings

What Providers

Interventions

Engagement

Health, Prevention, and Wellness

FIGURE 15.2.  Barriers to engaged services for health and wellness goals.

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PERSONAL EXAMPLE Walking Mr. Lam around the System Fong Lam had major challenges getting health care needs met while living in Chicago. He saw his primary care doctor at a City Clinic at 3500 South State, who then sent him to the West Side and the County Hospital for his monthly appointment at the diabetes clinic. He was having a hard time managing his blood sugar. Lam had to walk the long halls of the massive hospital to find the lab for his blood test. He then had to get to the North Side for his podiatry checkup and then to the Loop to see the psychiatrist. The psychiatrist wanted Lam to see his counselor at the Chicago Mental Health Clinic in Chinatown later in the day. Unfortunately, he was turned away from the City Clinic because he did not have a prior appointment. He then had to travel to the local Walgreens to fill his prescriptions. Lam did this using CTA elevated trains and buses, which were often running late because it was midsummer and vehicles were breaking down. Many of his needs, especially in terms of managing his chronic diabetes, went unmet solely because of these overwhelming demands. Mr. Lam registered with Thresholds, a local recovery service provider, where he was matched with a peer health navigator, Kevin Jones. Jones mapped out all the different clinics, labs, and pharmacies Lam must travel to and accompanied him to each appointment. At the appointment, Jones went into individual meetings when Lam asked and helped Lam manage his questions and doctor recommendations, writing these down in a notebook. These instrumental services were augmented by interpersonal support, an empathic ear that is “in the clinic” and “in the moment” to share all these challenges. Jones also addressed third-party payor concerns when they arose. He made apportionments for Lams as needed. Finally, Jones recurrently reviewed Lam’s health goals. Jones discovered, for example, that Lam did not have his COVID vaccinations. Lam reported he was worried that the vaccination might cause long-term harm. Jones and Lam compared the pros and cons of vaccination and Lam decided to do it, but only if Jones went with him.

et al., 2021). This enhanced perceptions of trust that there are provider “insiders” who understand their perspectives and look out for their concerns. In parallel development, peers with lived experience of disability have been shown to have value in services for others with disabilities (see Chapter 17). “Peerness” is the essential ingredient in peer support services grounded in recovery, a process steeped in hope and self-­determination. While this value describes recovery-based approaches to care in general, disclosure and shared lived experience are the unique ingredients to peerness (Corrigan, 2021). Disclosure involves three steps. First, people need to identify themselves as individuals with disability and recovery. Second, they need to generally share experiences that describe this identity with others. Third, as providers, they need to strategically share experiences that help service recipients realize their goals. PHNs for psychiatric disability adhere to three concepts:

• Peers. They are people with shared experience of disability and are from the same ethnic background. They may also share experiences in terms of “other” health concerns—­managing HIV/AIDS or dealing with the COVID-19 pandemic—and shared histories of social disadvantage, such as homelessness or incarceration. • Health. The primary focus is on a person’s physical health and wellness goals. • Navigation. PHNs do this by helping people engage in the existing health care

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system by coordinating health services and helping access care through, among other things, traveling with people to their primary care appointments and helping them with follow-up recommendations.

Who Provides the Health Services? We describe barriers here in terms of a provider–person dyad, specifically from the perspective of the person receiving services and the provider of these services. The first is enhanced by diversifying the workforce, and the second by promoting cultural competence and humility of providers.

Diversifying the Workforce The quality of services for people with psychiatric disabilities from diverse groups is enhanced when the provider workforce diversifies, specifically, when providers are “similar” to service recipients. Hence, policy and other administrative entities need to support workforce diversification. The U.S. Government leads this effort in this country. The 2021–2025 strategic plan of the National Institute of Minority Health and Health Disparity (NIMHD) clearly outlines the U.S. government’s commitment to diversification when it explicitly calls for support of training to enhance the diversity of the biomedical workforce and to promote training and advancement of minority health and health disparities researchers. NIMHD outlines four strategies necessary to achieve this goal. 1. Support individual-level programs to train students from health disparity populations in the biomedical sciences. 2. Enhance current and novel institution-level programs at institutions that have a historical commitment to educating underrepresented students and to enhance the ability of these programs to recruit, train, and retain a diverse biomedical research workforce. 3. Support training and mentorship programs for minority health and health disparities researchers at all stages of career and leadership development. 4. Incorporate development of specialized research skills into health disparities training programs, including core and emerging skills that are important for measuring, understanding, and addressing minority health and health disparities complexities.

Promoting Cultural Competence and Humility In Chapter 4, we compared a relatively discredited notion of culture—­essentialism—that groups are defined by biologically rooted categories; competence occurs when a provider memorizes these categories; and constructivism, cultural identity emerges for individuals as a result of their cultural and historical journey. Constructivism calls for flexible skills to promote cultural competence (Garneau & Pepin, 2015). Research has examined benefits of cultural competence training in the health workforce and has found a vast array of training approaches that include factors such as cultural awareness, defining cultural and linguistic competency, utilizing the ask, share, compare, negotiate model, communication skills, and health care specific teachings (Henderson et al., 2018; Jongen, McCalman, & Bainbridge, 2018; Kruse et al., 2017). Outcome studies showed positive improvements in practitioner knowledge skills, attitudes, and beliefs (Jongen et al., 2018)

15.  Physical Health and Wellness 285 

that extend to better health outcomes among service recipients (Lie et al., 2011). Research has especially noted the importance of cultural competence training in services for people with disabilities (Taylor-­R itzler, Balcazar, Suarez-­Balcazar, & Iriarte, 2008). Humility has been viewed as a better concept than competence. Humility is the product of conceptual evolution from essentialism to social constructivism models that frame culture as dynamic processes and changing identities of individuals in that group. This leads to programs rooted in humility, namely, teaching providers to approach patients with open mind, empathy, and unconditional positive regard.

What Services Are Provided? Services, intervention, and policy are often dominated by perspectives of the majority culture. This is apparent, for example, in ways in which health conditions and corresponding evidence-based interventions are described by Western medicine. The emergence of alternative and complementary medicines in the evidence-based research enterprise suggests American health services have evolved to include other non-­Western frames of conditions and interventions. Our own research has been especially interested in examining adaptations of basic ways to engage people in their health decisions, specifically in terms of decision making (Corrigan & Lee, 2020; Gao, Corrigan, Qin, & Nieweglowski, 2019; Lee, Lam, & Ditchman, 2015). Decision making is important at the intersection of understanding and acting on health concerns, with SDM dominating person-­centered approaches to care (Edwards & Elwyn, 2016; Galla, 2000; Légaré et al., 2013; Zolnierek & DiMatteo, 2009). The dominance of SDM may suggest an important area for cultural adaptation. As outlined in Chapter 4, concern has been expressed about self-decision-­making models per se, especially when considering people from diverse groups in which the broader social network may be keenly involved in treatment decisions (Corrigan & Lee, 2020). SDM reflects insights of self-­determination theory (SDT), which has been defined as essential for psychological growth and well-being (Deci & Ryan, 2008). SDT assumes that people value health plans that reflect personally defined priorities and operate in a system that promotes self-­determination. (Ryan & Deci, 2000) Autonomy, however, seems to reflect Western, individualist perspectives that may be less valued in more Eastern or collectivist societies (Markus, Kitayama, & Heiman, 1996; Oishi & Diener, 2001). Miller (1997) suggested that directive feedback from family may yield more satisfaction than autonomy in some diverse groups. Western approaches to decision making may be lacking. Hence, people from some cultural groups may wish to involve members of their extended family in decision making efforts (Lee, Lam, & Ditchman, 2015). Research shows, for example, that family dynamics impact self-care concerns among many Korean Americans (Nam, Song, Park, & Song, 2013; Park, Chesla, Rehm, & Chun, 2011). Family-­centered decision making (FCDM) may be a viable alternative to SDM (Corrigan & Lee, 2020). The central question here is whether and how much family members, especially parents, should be actively involved in health care decision making. One study showed that a group of Korean Americans with cancer significantly preferred active family involvement in care seeking compared to European Americans (Blackhall, Murphy, Frank, Michel, & Azen, 1995). The discussion here seems to recapitulate an essentialist view of FCDM that providers, for example, should incorporate FCDM in their services for East Asians with disabilities. Research, however, calls for heterogeneity, a constructivist view. For example, one study on Chinese living in the United States versus in Asia

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showed acculturation to America led to preference for SDM (Gao et al., 2019). Similar findings emerged for Korean decisioning about type 2 diabetes (Lee, Qin, Baig, Lee, & Corrigan, in press). Note that there are groups from cultures beyond East Asia that may prefer FCDM. For example, research among Latinx has described familism and respeto as values that are likely to influence family roles in health decision making (Corrigan & Lee, 2020). Deference shown by adult children to their parents may affect choices about health services. For that matter, service providers should not assume that European Americans, by virtue of their culture, will prefer SDM. Family centeredness is likely to vary among people of Western European heritage.

SUMMARY AND CONCLUSIONS People with serious mental illness have significant health problems that are major barriers to wellness and recovery. These problems are described in terms of direct indicators of the illness per se (e.g., physiological covariates or the harmful effect of cognitive and social disabilities on health management) and social factors that lead to service disparities. Rehabilitation providers need to master interventions relevant to all these causes. Prominent here are approaches that promote cultural competence and humility, as well as reflect interventions that occur beyond Western medicine and rehabilitation.

C H A P T E R 16

Co-Occurring Mental Illness and Substance Use Disorder

M

any people struggle with co-occurring or coexisting mental illness and substance use disorders. Until the publication of DSM-5 (APA, 2013), the substance use disorders included abuse of other drugs or dependence on alcohol. DSM-5-TR now simply defi nes them as mild, moderate, or severe substance use disorders (the abuse– dependence distinction has been dropped) (APA, 2022). Although people with co-occurring mental and substance use disorders are a heterogeneous group, two important fi ndings describe them: 1. Substance use disorders (SUDs) are common among people with serious mental illness (SMI). Along with many clinical studies, population surveys such as the 2018 National Survey on Drug Use and Health (SAMHSA, 2019) suggest that nearly 30% of adults with psychiatric disabilities report sufficient symptoms for an additional diagnosis of substance use disorder. Each year, over 3 million Americans, about 1.3% of U.S. adults, experience co-occurring SMI and SUDs (SAMHSA, 2019). The actual number is likely to be higher, because people with and without psychiatric disabilities tend to underreport substance use (Johnson, 2014). Individuals with SUD are also at increased risk of developing a psychiatric disability over time, according to data from the National Comorbidity Study Replication (Kenneson, Funderburk, & Maisto, 2013). 2. People with co-occurring disorders have a much greater rate of adverse outcomes than individuals who have mental illness alone (Alsuhaibani, Smith, Lowrie, Aljhani, & Paudyal, 2021). Typical adverse outcomes include higher rates of treatment discontinuation (Krawczyk et al., 2017), hospitalization (Heslin, Elixhauser, & Steiner, 2015), victimization (de Waal, Dekker & Goudriaan, 2017), criminal justice involvement (AlRousan, Rubenstein, Sieleni, Deol, & Wallace, 2017), homelessness (Henry, Watt, Rosenthal, & Shivji, 2016), suicide risk (Stone, Chen, Daumit, Linden, & McGinty, 2019), and serious physical illnesses (Onyeka, Collier Høegh, Nåheim Eien, Nwaru, & Melle, 2019). This chapter fi rst reviews early approaches to helping people manage their cooccurring disorders. This period was marked by the failure of two uncoordinated 287

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systems—mental health and substance use disorder services—to provide effective interventions. Integrated care evolved as the standard of effective programs for people with co-­occurring disorders; the principles that define integrated care are reviewed next in this chapter. Interventions that are often incorporated into an integrated master plan, and their supporting evidence, are then summarized. A research literature examining the impact of interventions for people with co-­occurring disorders is growing (e.g., Schouten et al., 2022; Wuthrich et al., 2021; Johnstone et al., 2023; Wang, Chau, Kong, Sun, & So, 2021), and research findings have led to the development of public health guidelines (SAMHSA, 2020). These findings and guidelines are reviewed where appropriate in the chapter.

EARLY CLINICAL AND RESEARCH APPROACHES Since the early 1980s, when the high rate and adverse consequences of co-­occurring disorders became apparent, numerous clinical interventions have been developed and tested. Initial studies documented that poor treatment was the norm. The traditional system of treatment in the United States, comprising parallel or sequential interventions in a variety of mental health treatment settings and separate substance use treatment settings, was ineffective. Substance use programs focused on abstinence while ignoring psychiatric symptoms. Mental health programs helped persons with symptoms (e.g., symptoms of depression, anxiety, or psychosis), but did not address substance use that might be exacerbating these symptoms. Both types of programs failed to put together a meaningful plan to help these persons pursue personal goals related to employment, independent living, and health. The programs were not set up for people with co-­occurring disorders; coordination between programs was absent or inadequate; and those with dual disorders rarely received simultaneous treatments for both disorders (Ridgely, Osher, Goldman, & Talbott, 1987). Since that time, there has emerged a national consensus regarding the goal of integrating mental health and substance use interventions, at least for people with co-­occurring severe mental illnesses and substance use disorders (DHHS, Office of the Surgeon General, 2016). Clinical innovations for people with co-­occurring disorders, public policies related to integrated treatments, and treatment effectiveness studies developed rapidly. Early studies of integrated treatment in the 1980s demonstrated that adding substance use counseling to community mental health treatment for people with dual disorders was helpful for those who were motivated and stayed with treatments (Mercer-McFadden, Drake, Brown, & Fox, 1997). However, many people with dual disorders were not easily engaged in treatment and not motivated to pursue abstinence, and these individuals fared poorly (Hellerstein, Rosenthal, & Miner, 1995). Outreach and motivational interventions were needed to engage people with dual diagnoses in abstinence-­oriented treatments (Mercer-McFadden et al., 1997). Early studies also showed that people with dual disorders did not readily fit into residential substance use programs, and that inpatient dual-­diagnosis treatments did not confer benefits after hospital discharge (Drake, Mercer-McFadden, Mueser, McHugo, & Bond, 1998). Pharmacological approaches were largely unstudied during this era. During the 1990s, programs for people with co-­occurring disorders began to integrate mental health and substance use interventions, and to tailor the interventions to each person’s stage of motivation. For example, individuals who were engaged in mental health treatment but did not wish to pursue abstinence were helped by a series of

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PERSONAL EXAMPLE Louisa Ramirez Got Ineffective Treatment Louisa Ramirez was a young Hispanic woman who developed difficulties with depression and suicidal behavior in adolescence. While her diagnosis evolved from major depression to bipolar I disorder over the next 10 years, Louisa dropped out of college, was divorced twice, made several suicide attempts, was hospitalized nearly 20 times, and was seen by numerous psychiatrists and mental health practitioners. Yet her substance use went undetected and untreated, despite countless mental health contacts. She had a remarkably parallel experience in the substance use treatment system: Over 5 years, she entered multiple substance use treatment facilities and attended numerous Alcoholics Anonymous meetings without anyone recognizing that she needed to manage her bipolar illness. She never received coordinated mental health and substance use treatment by the same practitioner(s), and remained unstable and miserable as a result.

motivational approaches (see Mueser, Noordsy, Drake, & Fox Smith, 2003). Several open clinical trials demonstrated that integrated interventions were effective in engaging people in treatment, helping them to reduce and eliminate their substance use, and helping to stabilize their mental illnesses (Detrick & Stiepock, 1992; Drake, McHugo, & Noordsy, 1993; Durell, Lechtenberg, Corse, & Frances, 1993; Meisler, Blankertz, Santos, & McKay, 1997). Similarly, modifications of traditional residential treatment programs seemed to be more effective (Sacks, 1997). By the mid-1990s, however, the field was still limited by a lack of controlled research (Drake et al., 1998).

CONSENSUS PRINCIPLES OF SERVICES FOR CO-­OCCURRING DISORDERS Before interventions addressing the discrete elements of problems related to co-­occurring disorders (also called dual diagnosis) are reviewed, overarching principles reflecting consensus on state-of-the-art programs are summarized (see Table 16.1). Programs like these rest on a platform of integrated mental health and substance use services. The principles are provided to outline a general framework for services; the next major section of this chapter describes specific tools to accomplish the interventions.

TABLE 16.1.  Principles of Dual-Diagnosis Care 1. Integrated treatment. Combine and individually tailor the mental health and substance use interventions. 2. Stagewise treatments. Match treatments to the person’s level of motivation and stage of recovery. 3. Long-term retention. Keep treatment, rehabilitation, and support available and easily accessible for as long as needed. 4. Comprehensive services. Address all areas of the individual’s personal recovery. 5. Interventions for people who do not respond to services. Provide different approaches to intervention for persons who are not making progress toward recovery.

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Integrated Treatment Interventions must integrate (i.e., combine and individually tailor) mental health and substance use interventions at the clinical interface (Spivak et al., 2020). Although this definition of integration differs slightly from administrative, financial, organizational, and physical integration, it often includes these other concepts. Clinical integration means that the same provider (or provider team) offers comprehensive mental health and substance use interventions in a coordinated fashion, and helps an individual learn to manage intertwined illnesses (Fantuzzi & Mezzina, 2020). The provider, or provider team, assumes responsibility for blending interventions into a coherent package. Interventions should seem holistic and unitary for the individual with dual disorders, with a consistent approach, philosophy, and set of recommendations. Integrated dual diagnosis treatment is a standardized and multidisciplinary approach that uses motivational interviewing in conjunction with mental health and addiction counseling to provide tailored services (Kikkert, Goudriaan, de Waal, Peen, & Dekker, 2018). In a controlled trial with 154 dually diagnosed individuals, researchers found a reduction in days of alcohol or drug use but no changes in symptoms or functioning at 12-month follow-up (Kikkert et al., 2018). Clinical integration implies that interventions are modified, as well as combined. Treatment components help people to manage both types of disorders by recognizing their inseparability. For example, social skills training addresses not only developing relationships but also finding friends who do not misuse substances, and learning to avoid and resist social situations associated with substance use. Relapse prevention addresses risk situations and coping strategies related to preventing episodes of substance use and/ or mental illness, while vocational rehabilitation focuses on employment that helps people to manage both disorders (Spencer et al., 2021). For example, integrated treatment within a vocational rehabilitation context might include identifying job opportunities that avoid substance exposure (e.g., bartending) and planning for managing work-­related stressors that might trigger relapse. Similarly, family psychoeducation emphasizes the need to understand and cope with two (or more) intertwined disorders (Drake, Xie, & McHugo, 2020).

Stagewise Treatments Effective programs tailor interventions to each person’s stage of treatment or recovery. Stagewise treatment is based on the concept of stages of change, discussed in Chapter 4 (Kortrijk et al., 2013). Although there are different ways of conceptualizing progress toward recovery, commonly recognized stages of treatment for a person with co-­occurring disorders include (1) engaging the person in a collaborative, trusting relationship (engagement stage); (2) helping the engaged person to develop motivation for recovery-­oriented interventions (persuasion or motivation stage); (3) helping the motivated person to acquire skills and supports for managing both illnesses and pursuing personal goals (active treatment stage); and (4) helping the person who is in stable remission to develop and use strategies for preventing relapses (relapse prevention stage).

Engagement Because many people with dual disorders have difficulty accessing and making use of treatment (Priester et al., 2016), effective programs emphasize engagement by providing

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outreach, practical assistance, and culturally competent services, as well as by using a motivational counseling style (Spencer et al., 2021). For example, people with dual disorders who are homeless are often engaged in integrated treatment programs through outreach to shelters and the streets by workers who have the same language capacity and cultural sensitivity, who help with housing and other practical matters, and who take the time to develop trusting relationships with these persons. The workers are often peers, or people in recovery who may have been homeless themselves. Services for co-­ occurring disorders are increasingly provided by peer professionals, who are individuals with lived experience of co-­occurring disorders (Videka et al., 2019). Peer professionals work alongside mental health clinicians to engage people in services, provide mentorship, and offer them hope for recovery (see Chapter 17). Approaches like these enable people to access services and establish relationships with providers. Without outreach and a trusting relationship, the rates of failure to engage and of dropout are high. Studies of residential programs also indicate that engagement strategies are critical, with more flexible programs not requiring abstinence at first, but encouraging people who are not yet abstinent to enter gradually.

Persuasion or Motivation Even after people are engaged in services, they may still struggle to manage their own illnesses. Effective programs provide motivational counseling interventions that are designed to increase readiness for more definitive interventions (see Chapter 7). Motivational interviewing helps people to identify their own goals and then recognize how, through a systematic examination of the advantages and disadvantages of current patterns, substance use and mental illness interfere with attaining those goals (Miller & Rollnick, 2023). Research demonstrates that people who lack motivation can be reliably identified and effectively helped by motivational interventions (Lawrence et al., 2017; Moore, Flamez, & Szirony, 2018). There are ways other than motivational interviewing to help people increase their motivation to manage their dual disorders. Contingency management, described in a subsequent section, is a good adjunct.

Active Treatment Motivated people are now ready to participate in active treatment; various treatment approaches are reviewed later in this chapter. Active approaches, ranging from behavioral tailoring and promoting medication adherence to improving recognition of early warning signs to prevent relapse, can be effectively used to help people to manage their mental illnesses and substance use disorders (Lo Coco et al., 2019; Magwood et al., 2020; Minkoff & Covell, 2022).

Relapse Prevention Despite achieving stability, remission, and symptom control, people remain vulnerable to relapse. Relapse prevention plans are therefore recommended in most programs, especially those with a residential focus (Davis et al., 2019). Relapse prevention essentially consists of identifying triggers that are likely to lead to substance use and planning how to handle situations in which those slips occur. Relapse prevention is described in Chapter 7 as a means of promoting illness self-­management.

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Long-Term Retention Co-­occurring disorders yield significant disabilities requiring interventions for months or years, with appropriate supports in the community, rather than rapid interventions such as an intensive treatment program (Drake et al., 2020; Pettersen et al., 2019). Learning to lead a satisfying and sustainable life, apart from substances, typically requires changing many aspects of one’s life—­activities, habits, stress management, friends, and housing. One 16-year prospective study indicates that this process takes time and often involves relapses en route to recovery (Drake et al., 2020). Most research suggests that longer treatment intervals are associated with better outcomes. This finding could, of course, be explained by self-­selection, since people who are more motivated may elect to stay in treatment longer; or it could be explained by circularity, because people who relapse are dismissed from conventional treatment programs and therefore have shorter treatment intervals. No studies have systematically varied the length of participation.

Comprehensive Services Effective programs for co-­occurring disorders offer a variety of services, which (as emphasized throughout this chapter) are individualized according to a person’s needs. Services may include individual and group counseling, medication management, peer group supports, family interventions, vocational services, liaison with the criminal justice system, money management, trauma interventions, and housing supports (Fantuzzi & Mezzina, 2020; Spencer et al., 2021; Spivak et al., 2020). These programs address substance use disorders and mental illnesses broadly in all services rather than narrowly as a discrete treatment intervention. For example, hospitalization during acute episodes of mental illness provides important opportunities for accurate diagnosis, stabilization, and linkage with outpatient interventions focusing on co-­occurring disorders. Similarly, housing, social, and vocational programs can support persons with dual diagnoses in acquiring skills and supports needed for recovery. These comprehensive programs are difficult to evaluate, because the interventions are not discrete. Extensive research on homelessness and incarceration indicates that people with co-­ occurring disorders are prone to lose housing and require extensive supports to maintain a residence (Henry et al., 2016). They may lose their housing because of financial, behavioral, and/or social network problems. During the initial stages of recovery, people need safe, stable, and secure housing. Mature programs around the United States inevitably have an integrated housing component that offers long-term residence or permanent housing (Urbanoski et al., 2018). People with co-­occurring disorders need not only treatment but also housing, social supports, and meaningful activities to attain and sustain recovery (Polcin, 2016). The psychological process of recovery involves not only managing one’s illnesses, but also pursuing personally meaningful and satisfying life goals (Corrigan et al., 2019). A person recovering from co-­occurring disorders often participates in employment, new friendships, self-help programs, renewed family relationships, exercise, hobbies, and other recovery-­oriented activities. The personal change process is complex and involves developing new attitudes, habits, behaviors, friendships, and coping strategies. As noted, recovery thus typically takes months or years rather than days or weeks, as the individual modifies many aspects of daily behavior and consolidates them incrementally. A continuous relationship with one counselor, who serves as a guide and support in pursuing a variety of goals, can promote a transformation to recovery.

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Interventions for People Who Do Not Respond to Services Several ancillary interventions may be helpful to individuals who do not respond well to basic approaches; these may include money management (Tsai, Ablondi, Payne, Rosen, & Rosenheck, 2019), intensive family interventions (Hogue, Schumm, MacLean, & Bobek, 2022), trauma interventions (López-Goñi, Haro, Fernández-­Montalvo, & Arteaga, 2021), and contingency management (Desrosiers, Tchiloemba, Boyadjieva, & Jutras-Aswad, 2019). Some of these may be instituted at the beginning of treatment. For example, early inclusion of family psychoeducation that addresses mental illness and substance use, for those individuals who live with their families, seems warranted. Long-term residential treatment is expensive but may be an effective approach for people who have cognitive problems or impulsive behavior and who have failed to respond to outpatient treatment.

RECENT CLINICAL APPROACHES More than 40 controlled studies of psychosocial interventions have been completed in the past 10 years, and new studies are published almost every month. Furthermore, pharmacological treatment approaches with considerable promise have begun to appear. The recent clinical research emphasizes the five principles of care outlined in Table 16.1 (Drake, Mueser, Brunette, & McHugo, 2004), as well as specific psychosocial interventions (Kirk et al., 2018), residential interventions (Woodhall-­Melnik & Dunn, 2016), and psychopharmacological interventions (Arms, Johl, & DeMartini, 2022; Xavier, Behera, & Selvarajan, 2020). Specific approaches to intervention are summarized in Table 16.2 and briefly defined here. Many of these are variations of interventions described more fully earlier in this book. Readers are referred to the chapters where they can learn more about the particular interventions; ways in which they are adapted for co-­occurring substance use disorder are described here.

Motivational Interviewing Many people who misuse alcohol and other drugs do not believe that the benefits of giving up the substance misuse outweigh the costs. Motivational interviewing is reviewed in Chapter 7 as a way to promote SDM; however, it was originally developed to help people make decisions about substance use (Barnett, Sussman, Smith, Rohrbach, & SpruijtMetz, 2012). Motivational interviewing helps people identify advantages and disadvantages of using drugs and alcohol (Miller & Rollnick, 2023). For example, someone might list advantages of alcohol use as “managing stress better” and “becoming the life of the party.” Costs might include “dealing with my angry wife” and “angering a boss who

TABLE 16.2.  Interventions for People with Co-Occurring Disorders

• Motivational interviewing • Cognitive and cognitive-behavioral

• Care coordination • Pharmacological

• Contingency management • Twelve-Step programs • Family interventions

• Legal interventions • Harm reduction

therapies

interventions

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thinks that partying at night gets in the way of my job performance.” Note that the costs and benefits for using alcohol are likely to be different for use of another substance (e.g., cocaine) by the same person. Providers use listening skills to help people understand the costs and benefits of a decision. As indicated in Chapter 7, this is not a simple task—just adding up costs and benefits, and moving forward when there are more benefits. Dialogue is central to motivational interviewing, which is an interactive process enabling people to hear for themselves what underlies specific decisions. In addition, the costs and benefits of giving up substances are not the same as the costs and benefits of actively participating in a treatment program. For instance, a person might say, “Just because I want to stop using cocaine does not mean I want to spend 2 hours every day traveling across town on public transportation to get to the treatment program.”

Cognitive and Cognitive-­Behavioral Therapies Motivational interviewing is often followed by cognitive or cognitive-­behavioral counseling, which entails helping people to recognize their motives and risk factors for substance use; to develop alternative strategies for dealing with motives and risk factors; and to practice, and then use, these new strategies (Vujanovic et al., 2017). As discussed in Chapter 13, cognitive therapy is a series of interactive strategies in which people learn to identify and challenge beliefs that cause problems for them. For example, Judy might believe that she can only deal with job stress by drinking seven glasses of wine at night. Cognitive therapy would help her challenge this belief and develop a counter to it, so that she is less likely to feel an urge for overdrinking in the future. Several studies have examined the impact of cognitive and cognitive-­behavioral therapies. Research reviews suggested the effectiveness of CBT for symptom improvement and substance use reduction (Vujanovic et al., 2017), particularly for CBT combined with motivational interviewing and for adults with depression (Riper et al., 2014).

Contingency Management Contingency management involves the systematic provision of incentives and disincentives for substance use in order to decrease future misuse (Forster, DePhilippis, & Forman, 2019). Contingency management can include extra privileges (e.g., home visits), prizes, money, token systems, or activity vouchers (Desrosiers et al., 2019). Contingent incentives have been shown to be effective in abstinence for a variety of substances (Petry, Alessi, Olmstead, Rash, & Zajac, 2017) and for individuals with co-­occurring serious mental illness (McPherson et al., 2018). For example, in an RCT in adults with co-­occurring alcohol use disorder and serious mental illness, McDonell and colleagues (2017) showed that prizes for negative urine samples can be effective in increasing abstinence and reducing drinking behavior.

Twelve-Step Programs Programs with 12 steps are commonly used to help people address goals undermined by substance use. These programs are peer-led, with participants benefiting from peer support in the light of 12 principles. These include admitting that one cannot control one’s addiction to alcohol or other drugs; recognizing the need for the help of a higher power to become abstinent; examining past errors and making amends for these errors; learning

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to live a new life separate from addiction; and helping others who suffer from similar substance use problems. A new member is encouraged to obtain a sponsor, a more experienced person in recovery, who guides the new member through the program. The 12 steps were originally embodied in Alcoholics Anonymous, but versions of them are now included in Narcotics Anonymous and Cocaine Anonymous. Programs with 12 steps for people with co-­occurring disorders include Dual Diagnosis Anonymous (Milani et al., 2020) and Double Trouble in Recovery (Eddie et al., 2019). A significant research literature documents the effects of 12-step programs on people with co-­occurring disorders (Eddie et al., 2019; Milani et al., 2020; Tonigan, Pearson, Magill, & Hagler, 2018). Many of these studies seem to have been one-group longitudinal designs showing positive benefits for people who participated in 12-step programs. Although research is somewhat lacking on 12-step services for people with dual disorders, the research literature suggests that such programs have significant effects for people with illicit drug use (Bøg, Filges, Brännström, Jørgensen, & Fredrikksson, 2017) and alcohol use disorder (Kelly, Humphreys, & Ferri, 2020).

Family Interventions Interventions for families, delivered by professionals or peers, are widely advocated and effective; however, they are rarely used in either the adult mental health field or the substance use disorder field (Hogue et al., 2022). Family interventions are more extensively implemented and researched in regards to adolescent substance use (Hogue et al., 2017). As indicated in Chapter 12, effective family interventions address education, support, and skills; that is, they help family members to understand the illnesses and treatments that their relatives are experiencing; they acknowledge the pain of the family members themselves and provide opportunities for them to support one another; and they enable family members to improve their skills for helping their relatives. For example, family members can learn and practice how to respond when their relatives are intoxicated, suicidal, or psychotic, all of which are difficult situations that require some knowledge and training. Families can also learn skills for solving new problems as they arise, as well as ways to access effective human service resources in their local areas. Effective interventions involve a substantial amount of time for meetings, usually over the course of several months.

Care Coordination Care coordination is essential to increasing the intensity and integration of communitybased services; assertive community treatment (ACT) is one well-­studied example in the literature (see Chapter 8). Briefly, ACT for people with co-­occurring disorders would include a multidisciplinary team with a relatively small caseload providing comprehensive and time-­unlimited services covering the gamut of challenges including those reflecting psychiatric disabilities and substance use problems. The majority of ACT recipients experience co-­occurring substance use issues (Abufarsakh, Kappi, Pemberton, Williams, & Okoli, 2023). Review findings suggest that more intensive and integrated services reflected in ACT had superior outcomes in some, but not all, areas (Penzenstadler, Soares, Anci, Molodynski, & Khazaal, 2019). In a systematic review of 29 studies, authors found less use of substances, increase in readiness for change, and reductions in hospitalizations and days intoxicated (Abufarsakh et al., 2023).

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Pharmacological Interventions Chapter 9 examines psychopharmacological issues and rehabilitation. Pharmacological treatment of the comorbid mental health diagnosis may assist the person in recovery from substance use disorder (Iqbal, Levin, & Levin, 2019). Several studies have examined the effects of antipsychotic medications on co-­occurring disorders, suggesting that atypical antipsychotic medications may have beneficial effects on the psychotic symptoms of people with dual disorders, decrease cravings, and reduce substance use (Krause et al., 2019). Valproic acid is an anticonvulsant often prescribed for people with seizure disorders; it also has mood-­stabilizing capacities. Several studies show that valproic acid aids with alcohol and cocaine use disorders (Romão et al., 2022). Hallucinogens (e.g., ketamine, psilocybin) have been increasingly evaluated as a treatment for a variety of substance use disorders; although promising, studies have lacked quality and rigor, and it is unclear how they impact psychiatric conditions (Begola & Schillerstrom, 2019). For alcohol use disorder, there are three FDA-approved medications: disulfiram, naltrexone, and acamprosate. Disulfiram (more commonly known by its primary trade name, Antabuse) is sometimes prescribed to people who misuse alcohol as a way to dissuade them from using it in the future. Disulfiram intensifies the “hangover effects” of alcohol consumption; as a result, people may want to avoid disulfiram in order to avoid these symptoms. Disulfiram is only prescribed when a person is fully informed about its effects and consents to take it. The drug has been safely used in open clinical trials to decrease alcohol use in people with dual disorders (Akbar, Egli, Cho, Song, & Noronha, 2018). Naltrexone impedes the intoxicating effects of alcohol, whereas acamprosate treats symptoms of withdrawal (Akbar et al., 2018). Medication-­assisted treatments are an evidence-based, first-line approach for treating opioid use disorder: Here we review methadone, naltrexone, and buprenorphine. Methadone is a less risky version of opium, which can be obtained legally, and which reduces cravings related to heroin and other opioid addictions (Ghanem, Dromgoole, Hussein, & Jermyn, 2022). Methadone also suppressed symptoms of opioid withdrawal and does not produce the intoxicating experience of other opioids. Naltrexone reduces intoxication, cravings, and withdrawal. Buprenorphine, safest of the three, reduces cravings (Ghanem et al., 2022). Finally, naloxone, when injected or administered via nasal spray, can rapidly reverse an otherwise fatal opioid overdose. People with SMI have higher smoking rates and greater burden of disease than those without a mental illness (Pearsall, Smith, & Geddes, 2019). Several pharmacological treatments have shown efficacy in assisting people with SMI stop or reduce smoking. A systematic review and meta-­analysis of 28 controlled studies in people with SMI found that varenicline, bupropion, and nicotine replacement therapy (e.g., patches, gum) all have strong evidence in this population (Pearsall et al., 2019). Medication-­assisted treatment is often combined with behavioral interventions such as motivational interviewing, CBT, lifestyle interventions, or digital apps (Spanakis et al., 2022).

Legal Interventions Interventions involving the criminal justice system are commonly used with people with co-­occurring disorders; many are involved with the courts and under some sort of legal control or supervision. These interventions are more completely discussed in Chapter 14. Legal directives may include incarceration, conditions of probation and parole, involuntary hospitalization, outpatient commitment (i.e., assisted outpatient treatment), coercive

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medications, and guardianships for finances. More subtle but coercive techniques are also used to shunt people into hospitals, group homes, and other supervised situations. With limited evidence for its effectiveness, some U.S. states allow family members or health care providers to obtain court-­ordered treatment for individuals who are at high risk of harming self or others through their substance use (Jain, Christopher, & Applebaum, 2018). Given the frequency with which mandatory interventions are used for this population, remarkably few studies have addressed them. A small study examining the implementation of an open-door policy for inpatient treatment of dual diagnosis found that it created a less coercive environment and did not increase substance use or violence on the ward. Forensic assertive community treatment (FACT; discussed in Chapter 14) is a community-­delivered care coordination intervention for justice-­involved individuals with psychiatric disabilities or dual diagnosis (Lamberti et al., 2017). FACT recipients typically are receiving court-­ordered community supervision and are recently released from incarceration or anticipating release; services focus on holistic health needs and reducing recidivism.

Harm Reduction In some ways, most of the interventions reviewed in this section involve personal goals that are facilitated by eliminating substance use. Recent views offered by advocates and public health specialists suggest that abstinence is not the preferred or viable option for some individuals who use substances (Bahji, Yanagawa, & Lamba, 2020). The life circumstances of some persons make it unlikely that they will engage in treatments that challenge these preferences. Accordingly, for these individuals, the goal changes to reducing the harm that results from use of certain substances by strategizing ways to reduce substance use in ways that reduce the associated risks. Harm reduction has been shown to reduce accidental injury, overdose, hospitalizations, progression of substance-­related

PERSONAL EXAMPLE Bill Harrison Learned to Manage a Dual Diagnosis Bill Harrison began to have mood swings as an adolescent. Although a bright and ambitious young man, Bill drank heavily both when he was in a high-energy state and when he was feeling depressed. The combination of unstable moods and alcohol use resulted in his flunking out of college and having trouble maintaining a job. He rejected counseling in both high school and college. At age 24, he attempted suicide, was hospitalized, and was referred to the local community mental health center. The treatment team recognized immediately that Bill had problems resulting from co-occurring disorders. After 6 months of outreach, building an alliance, and providing education, they engaged Bill in a process of selecting interventions of his preference. An effective treatment plan was soon in place. The team psychiatrist prescribed lithium for his bipolar disorder and disulfiram for his alcoholism; Bill attended a dual-diagnosis group and then Alcoholics Anonymous meetings regularly with a team counselor who was also in recovery; and the team employment specialist helped him to attend community college part-time and work part-time. Bill was confident that he was learning to manage his illnesses, and that he was making progress toward his goals of finishing college and working in a bank.

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physical illness, and to alleviate symptoms of depression and anxiety (Charlet & Heinz, 2017). Several programs have emerged to promote harm reduction. Needle exchange programs provide opportunities for people who use drugs intravenously to replace used needles with sterile ones with no charge or recrimination (Bahji et al., 2020). Supervised injection sites provide safer spaces for people to use illicit drugs (Levengood et al., 2021). Methadone replacement therapy (discussed earlier as a pharmacological intervention) provides people who use heroin or other opioids with a legal alternative (Moore et al., 2019), and access to nalaxone prevents opioid overdose (Macias-­Konstantopoulos et al., 2021). Safe sex programs may also be helpful for some people with psychiatric disabilities. Ready provision of free condoms has decreased the spread of HIV/AIDS, especially among people with low incomes (Macias-­Konstantopoulos et al., 2021; Murdock, Brizzi, Perez, & Badowski, 2019). Rehabilitation providers involved in harm reduction programs need to be fully aware of the different statutes that may be relevant to these kinds of programs (Elliott, 2012). Providers are not at liberty to violate laws in promoting harm reduction; they cannot, for example, purchase heroin for program participants in order to keep them from being victimized by crime. The legality of needle exchange programs and safe injection sites varies by jurisdiction (federal, state, and municipal regulations may differ) and time period. Providers of harm reduction need to remain up-to-date on the various statutes that may apply to their services. There is evidence that harm reduction is being incorporated into services for people with co-­occurring disorders. For example, harm reduction is being increasingly integrated in the housing first model, a residential program for people with co-­occurring disorders (Kerman et al., 2021). However, the quality of the research thus far is limited, and many of the studies found in a comprehensive review suggested that harm reduction interventions were being combined with motivational interviewing. Moreover, research has yet to address how harm reduction should be adapted for people with co-­occurring disorders.

CURRENT RESEARCH QUESTIONS Current research questions encompass both clinical interventions and service system issues. Individual, group, family, self-help, and pharmacological interventions will undoubtedly become more effective as they are standardized, tested, and improved. Refining and testing specific interventions with the full range of participants rather than with highly compliant or otherwise nonrepresentative individuals is clearly a priority. In addition, we need to study how to sequence and combine interventions in relation to stages of treatment and recovery. For example, one set of interventions, such as individual and family psychoeducation combined with outreach and motivational counseling, might be optimal for people who are not yet engaged in treatment and not yet motivated to pursue abstinence; an entirely different set of interventions, such as group behavioral substance use counseling and medications, might prove best for those who are engaged in treatment and actively trying to achieve long-term abstinence. The studies conducted to date have typically examined persons with dual diagnoses as a group, although they are clearly heterogeneous. Another priority might be to develop and test typologies for the sake of developing more specific clinical recommendations and research. Both short- and long-term studies indicate a diversity of responses to standard dual-­diagnosis treatment (Hides, Quinn, Stoyanov, Kavanagh, & Baker, 2019; Iqbal et al.,

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2019; Murthy, Mahadevan, & Chand, 2019). Xie, Drake, and McHugo (2006) identified four distinct courses in a prospective 10-year study: The first group responded quickly to treatment and developed relatively stable abstinence; the second group responded quickly but continued to have a fluctuating course over many years; the third group (the largest) improved slowly and steadily over time; and the fourth group appeared to be completely unresponsive to standard treatments over the 10 years of the study. Characterizing these groups carefully might result in more effective matching of individuals to services, and might facilitate the development of new interventions for subgroups. Developing treatment pathways is also critical. Applying the concept of pathways to the treatment of co-­occurring disorders suggests that simple and inexpensive interventions should be tried first, and that interventions of increasing intensity should be added if people demonstrate no response to the simpler interventions. Some data are already available for a number of secondary interventions, such as disulfiram, clozapine, intensive family treatments, trauma interventions, and long-term residential interventions, but there have been no comprehensive attempts to develop algorithms. Beyond developing and testing interventions for participants in routine treatment systems, transforming systems of care is a challenge for administrators and services researchers. Thus, for example, the field needs studies of financing and contracting mechanisms, of dissemination and implementation, of training procedures for all clinicians, of computerized decision support systems, and of SDM. Service system interventions, rather than small programs utilizing highly trained, specialized clinicians, will be required to have any significant impact on a problem that affects at least half of persons with serious mental illness.

SUMMARY AND CONCLUSIONS This chapter has addressed rehabilitation services for people with co-­ occurring severe mental illness such as schizophrenia or bipolar disorders and substance use disorders. Recent controlled research studies indicate that individual and group counseling, contingency management, care coordination, and residential interventions are effective; promising approaches to family intervention and psychopharmacology are currently being tested. Principles of care include integration of mental health and substance use disorder interventions, stagewise interventions that correspond to an individual’s level of motivation, long-term care, comprehensive care, and treatment pathways based on treatment response. Future research is expected to refine existing interventions, clarify a typology of individuals with dual diagnoses, and improve attempts to match people to individualized treatments.

C H A P T E R 17

Peer Supports and Services

P

eer supports and services are provided by individuals who have experienced mental illness and are in the process of recovery or who have achieved recovery. The premise is that individuals who have shared common experiences can provide better support and safer environments than can individuals who have no history of psychiatric treatment. Peer supports and services are recovery-oriented by their very nature, because they engender empowerment and are based on the principle of self-determination (Stratford et al., 2019). Peer services and supports typically occur within one of three systems or models: (1) organically emerging peer support such as mutual support or self-help groups, (2) peer-led service organizations, and (3) peer services provided within existing clinical and rehabilitation settings. This chapter provides a historical overview of peer services, then focuses primarily on reviewing the research on peer services provided through the third model: clinical and rehabilitation settings.

HISTORICAL CONTEXT Persons with mental illness and their families have assembled for support and advocacy for over 170 years. In 1845, the Alleged Lunatics’ Friend Society was established in England (Van Tosh, Ralph, & Campbell, 2000). In the United States after the Civil War, Elizabeth Packard wrote of her forced commitment by her husband and founded the Anti-Insane Asylum Society in Illinois. Elizabeth Stone, who was institutionalized by her family for her decision to switch from her family’s religion, undertook comparable activities in Massachusetts (Van Tosh et al., 2000). Clifford Beers described the abuses he experienced when hospitalized for psychiatric problems in his 1908 book A Mind That Found Itself: An Autobiography; he was also instrumental in founding the National Committee for Mental Hygiene, which later became Mental Health America (Grob, 1994). This association has been instrumental in the promotion of peer participation in mental health advocacy, planning, and service delivery, and remains so today. In the 1940s, two members of the staff of Rockland State Hospital brought together a group of patients who were about to be discharged, hoping that these persons’ friendships might endure after their release from the hospital (Anderson, 1998). The people formed a group with fi nancial support from one of these staff members, and continued meeting 300

17.  Peer Supports and Services 301 

weekly for several years to provide support to each other. This self-help group, originally called the We Are Not Alone Society, later formed what became Fountain House (Beard, 1978). Other self-help groups, such as Recovery, Inc. (now Recovery International) and GROW, have also been in existence since the mid-20th century (Lefley, 2003). The development of the modern American mental health consumer movement/survivor civil rights movement occurred in the early 1970s, independently of these roots (Chamberlin, 1990; Frese & Davis, 1997). The mental health consumer movement coincided with the self-help revolution (Gartner & Riessman, 1984); it was fueled by the civil rights movement generally, and by the deinstitutionalization movement specifically. The President’s Commission on Mental Health (1978) noted the formation of numerous self-help groups of persons with mental and emotional problems throughout the United States. Like other marginalized groups in the 1970s, people with SMI began to realize that they were being denied basic rights, were discriminated against, and were devalued by society. Consequently, these former patients began to organize to correct some of these wrongs by regaining their rights and demonstrating that they were not powerless victims. These initial groups had names like the Insane Liberation Front in Oregon, the Mental Patients’ Liberation Project in New York, and the Mental Patients’ Liberation Front in Boston. In 1972, the voices of consumers began to be heard with the publication of Madness Network News, which ceased publication in 1986. The annual Conference on Human Rights and Against Psychiatric Oppression started in 1973. The publication of On Our Own: Patient-­Controlled Alternatives to the Mental Health System (Chamberlin, 1978) was an important milestone for the movement, as consumers and others were able to read about the self-help movement and the development of peer-­operated services in the mainstream press (Van Tosh, Ralph, & Campbell, 2000). Some of these early activists had an antipsychiatry bias, because they were angry at a system that they felt had abused and dehumanized them (Lefley, 2003). Hence, some called themselves psychiatric survivors and formed the National Association of Psychiatric Survivors (Lefley, 2003). These activists maintained that they did not survive the illness; they survived the treatment. More radical survivors formed the Support Coalition International, currently called MindFreedom International. Others joined the National Depressive and Manic Depressive Association (now the Depression and Bipolar Support Alliance). Other individuals seem to have more moderate views regarding forced treatment and the use of psychiatric medications; they may believe that they would not currently be alive without their medications (Lefley, 2003). The National Mental Health Consumers’ Association formerly represented those with more moderate views and took no formal position on forced treatment. This organization is no longer functioning, but some of its members have joined the NAMI Consumer Council (Lefley, 2003). The Community Support Program (CSP), initially at NIMH, and later within SAMHSA, was a significant catalyst in the development and expansion of the consumer movement and of peer services and supports (Lefley, 2003). Although peer support programs were conceived and developed by people with serious mental illness, CSP had the federal financing and resources to publicize and promote them. CSP implemented a number of initiatives, including funding peer-run programs, contracting for and offering consultation, and offering informational materials to stimulate the growth of self-help programs (Brown & Parrish, 1995). In 1985, CSP provided funds for the first national Alternatives conference. Alternatives, offered annually, is organized and planned by consumers and serves to build skills and share knowledge (Lefley, 2003; Van Tosh et al., 2000). In 1988, CSP undertook a unique grant program to demonstrate and evaluate mental health self-help programs (Brown & Parrish, 1995). Thirteen projects were funded,

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PERSONAL EXAMPLE The Benefits of Peer Support Frank Carrazza was doing well, despite struggling with psychiatric disabilities related to schizophrenia for 20 years. As a result of working with his supported employment team, Frank had a part-time job as a clerk in a nearby shipping company. His symptoms were currently managed well, in part because of the strong relationship he had built with Dr. Peterson. Frank had been living in his own apartment for the past 4 years. Despite all these accomplishments, Frank felt something was missing. He had a nice support network among members of a local church. But sometimes he still felt inexplicably distant from them. Frank heard about a local organization called Together We Can (TWC), a group of people with psychiatric disabilities. TWC had twice-weekly mutual support meetings where people might drop in to address current challenges in their lives or provide assistance to peers. Frank liked being able to help others with challenges similar to his. But TWC was not all problem-focused; it also offered regular social opportunities. Frank particularly liked to attend the group on Friday evenings, when TWC alternated movie nights with music mixers. TWC became a place with which he identified. “These are my people,” he would say.

including employment programs, housing initiatives, and linkage services between hospitals and communities to assist in transitions. The National Association of State Mental Health Program Directors (NASMHPD) approved a position statement in 1989 that recognized the significant contributions of peers to improving service delivery. Consequently, by the 1990s, 30 states had an Office of Consumer Affairs staffed by peers (Van Tosh & DelVecchio, 1998). A national survey conducted by the Berkeley Self-Help Center in conjunction with NASMHPD found that almost all states funded self-help groups (Segal, Silverman, & Temkin, 1995). The Center for Mental Health Services funded a multisite research study, titled the Consumer Operated Services Program, to investigate the effects of consumer-­operated services as an adjunct to traditional mental health care when compared to traditional services without consumer-­operated services; many sites participating in this study employed a randomized design (Clay et al., 2005). In 2010, the ACA expanded Medicaid service, including mechanisms for peer service billing to Medicaid (Daniels et al., 2013). As of 2019, 39 states allowed Medicaid reimbursement for peer mental health or substance use services (Videka et al., 2019). Peer services and supports now permeate much of the formal mental health system— not as substitutes for, but as adjuncts to—­clinical mental health services. Peer workers are practicing in all 50 U.S. states, in a wide variety of settings (Videka et al., 2019). In a national survey, 37% of facilities serving individuals with SMI have peer support available, while 56% of substance use facilities include peer services (Videka et al., 2019). Accordingly, there have been initiatives to train and certify peers to be providers. In the United States, 49 states now have a peer support credential (Voss et al., 2022). State credentials typically require a minimum high school diploma, personal experience with mental health challenge, and completion of a training program. Required training totals an average of 50 hours, and there is often a supervised experiential component (Videka et al., 2019). In light of mental health needs that unfolded during the COVID-19 pandemic, President Biden’s national strategy for mental health care contained plans for a nationwide peer certification (Canady, 2022).

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The U.S. Department of Veterans Affairs (VA) has identified peer support as central to its psychiatric services (Office of Mental Health, 2008). The VA employs more than 1,000 paid peer support staff and additional peer support volunteers throughout the United States (U.S. Department of Veterans Affairs, n.d.). Termed “peer specialists” in the VA, these employees must be veterans, have at least 1 year in recovery, and complete an approved program of study (Klee, Chinman, & Kearney, 2019).

DEFINING PEER SUPPORTS AND SERVICES Who is a peer? In the context of mental illness, peers are people with lived experience. They are usually people with a history of significant mental illness that caused psychiatric disability. There are no litmus tests for being a peer: hospitalization, medication, length of illness, SSDI status, or work disruption. Usually, people who identify themselves as individuals with lived experience with serious mental illness are considered peers. They assume all roles in peer-­operated services such as mutual support groups. Peers who are hired into service positions are usually also in recovery. Recovery means that people are able to achieve important life goals, including those related to employment, despite their disabilities. Varying definitions of peer support have emerged (Solomon, 2004; Stratford et al., 2019). Fortuna, Solomon, and Rivera (2022) recently provided an updated definition of peer support as mutually agreed-upon emotional and/or social support that is provided by individuals with lived expertise to other persons who share similar mental health and social challenges. Peer supporters effect personal change in those they support through self-­determination. Stratford and colleagues (2019) also highlight the civil rights underpinnings and social justice framework of peer support, in that peer support challenges traditional hierarchies of care and structural stigma, emphasizing the rights of individuals with mental illness to effect change in mental health service systems. Peer support is often mutually beneficial through a reciprocal process of giving and receiving, based on principles of respect and shared responsibility (Mead, Hilton, & Curtis, 2001). Through this system of sharing, supporting, and assisting others, feelings of rejection, discrimination, frustration, and loneliness are combated (Stratford et al., 2019). Peer support in the traditional sense of self-help groups is voluntary. However, peers who deliver support services are typically financially compensated. Copeland and Mead (2004) have distinguished peer support from clinical support. Peers understand each other because they’ve “been there,” shared similar experiences, and model a willingness to learn and grow. Peers assemble in order to change unhelpful patterns, get out of “stuck” places, and build relationships that are respectful, mutually responsible, and, potentially, mutually transforming. Furthermore, peer support requires disclosure of these shared experiences (Stratford et al., 2019). Peer support may be understood in terms of several theoretical explanations, which are summarized in Table 17.1.

THEORETICAL BASES FOR PEER SERVICES Several psychosocial processes are considered the theoretical bases for peer services: social and emotional support, experiential knowledge, social learning theory, social comparison theory, and the helper therapy principle (Fortuna et al., 2022; Magura et al., 2003; Scannell, 2022; Solomon, 2004).

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TABLE 17.1.  Social Process Theories of Peer Services and Supports Social and emotional support

• Communication and demonstration of acceptance and approval • Provision of tangible materials, information, advice, feedback, resources, and companionship Experiential knowledge

• Specialized information and perspectives acquired through experience of coping with mental illness • Practical and applicable information and strategies for problem solving Social learning theory

• Role models through active examples and verbal instruction • Means to cope and enhanced sense of self-efficacy in managing illness • Reciprocal learning Social comparison theory

• Sense of normality through interacting with others who share commonalities • Upward comparison: Optimism, hope, and incentive to achieve • Downward comparison: A sense that things can be worse Helper therapy principle

• Help for oneself through helping others • Sense of increased self-efficacy • Enhanced self-esteem through social approval from those helped

Emotional support involves communicating acceptance and approval of peers (Magura et al., 2003; Davidson, Chinman, Sells, & Rowe, 2006) and letting others know that they are cared about, valued, and loved. Two of Yalom’s (1985) therapeutic factors in group psychotherapy are included in the emotional support provided by self-help groups: universality, or learning that others have similar problems and/or circumstances; and group cohesiveness, or perceiving that group members understand and accept each other (Lyons et al., 2021). Social support is having people available who can assist peers in meeting resource and psychosocial needs (Addo, Ginder, & Nedegaard, 2022). Social support encompasses attachment and reassurance; instrumental support, which includes provision of material goods and services, and informational support, which involves advice, guidance, and feedback. Thus, social and emotional support includes peer advice, acceptance, a sense of belonging, and positive feedback as to persons’ own self-worth (Fortuna et al., 2022). Because of the empathic, open, and receptive nature of the peer relationship, peers are comfortable with exploring problems and concerns in the presence of other peers (Magura et al., 2003). Research has found that supportive relationships contribute to positive adjustment, and that they buffer stressors and assist individuals in encountering adversities, including those emanating from psychiatric problems (Beckers, Maasen, Koekkoek, Tiemens, & Hutschemaekers, 2022). Experiential knowledge consists of the specialized information and perspectives that peers have obtained through living with severe psychiatric disabilities and can provide to one another (Fortuna et al., 2022). Peers who participate in self-help groups or receive services provided by peers have opportunities to learn skills and behaviors through general information sharing and through observing the behaviors of others (Magura et al., 2003, p.  402). Experiential knowledge is practical and applicable to similar circumstances. Peers are able to learn from other peers what has worked for them in similar situations and with similar problems. Within a self-help group context, common elements

17.  Peer Supports and Services 305 

regarding both problems and strategies for solutions emerge from information shared by those who have experienced similar problems (Lyons et al., 2021). These processes may validate peer approaches, as well as provide individuals with increased confidence in their ability to cope with disabilities. Social learning theory within the context of peer services and supports is similar to experiential learning. Peers function as competent role models who offer means of learning through example and instruction (Barton & Henderson, 2016). Those who are receiving or have received mental health services are credible role models for others with psychiatric disabilities; interactions with peers are likely to effect positive behavioral change. They may acquire a sense of self-­efficacy in dealing with the sequelae of mental illness and with the mental health system. Reciprocal learning is an important component of social learning. Peers who have confidence in managing their illness are also more optimistic about their future (Thomas, Muralidharan, Medoff, & Drapalski, 2016). Social comparison theory enables peers to establish a sense of normality through interactions with others who share a common experience of psychiatric disabilities (Barton & Henderson, 2016). Social comparison involves both upward and downward comparisons. In upward comparisons, peers who interact with those whom they perceive to be doing better gain a sense of optimism and hope, as well as an incentive to strive toward improvement. In downward comparisons, peers perceive other peers as not coping with their psychiatric disabilities well, which offers the perspective that circumstances can be far worse than their own situations (Barton & Henderson, 2016). In helping others, one helps oneself; this is the helper therapy principle (Riessman, 1965). Advising, assisting, and emotionally supporting others reinforce one’s own learning of valued attitudes, skills, and behaviors (Magura et al., 2003). Helpers enhance their self-­esteem through the social approval and appreciation they receive from those whom they help. In a qualitative study of peer supporters in substance use, supporters reported benefiting from their helper role (Scannell, 2022).

TYPES OF PEER SERVICES Types of peer services, summarized in Table 17.2, are often divided into peer-­delivered self-help and peer-­provided services.

TABLE 17.2.  Types of Peer Services Mutual support or self-help groups These organizations typically are formal groups where participants benefit from the exchange of personal ideas with people who share lived experience. Often the focus is on current problems that are challenges to the achievement of personal goals. People also benefit from helping others in this kind of exchange. Peer-provided services

• Peer-operated services are developed and administered by and for people with lived experience. • Peer partnerships provide programs similar to peer-operated services, but peer providers partner with others to help them administer these programs. Nonpeer partners may, for example, be experts in finance or personnel. • Peer employees are individuals with lived experience hired by traditional service programs to provide treatment for people with serious mental illness through using their lived experience.

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Peer Delivered Self-Help Mutual support or self-help groups constitute the oldest and the most common type of peer services and supports. They have been developed for a wide diversity of problems and issues, often because the formal system of care failed to meet people’s total needs (Lieberman, 1990). Self-help groups are voluntary opportunities for mutual aid, usually formed by peers who come together for assistance in satisfying a common need, overcoming life-­disrupting problems, and bringing about personal change (Katz & Bender, 1976). Self-help groups are typically free of charge and not organized or led by professionals, unless the professionals are participating in the groups as peers (Lyons et al., 2021). These groups offer hope, information, and opportunities to help members themselves, as well as others. Self-help groups are growing rapidly in low- and middle-­income countries and may be more easily accessible than other types of mental health support (Fortuna et al., 2022). Self-help groups are typically initiated by peers, but in some cases nonpeer providers may facilitate the development of a group and help to maintain the group until a leader or leaders emerge. Well-known examples of self-help groups for persons with severe mental illness include Recovery International (formerly Recovery, Inc.), GROW, Schizophrenia Alliance, Depression and Bipolar Support Alliance, Double Trouble in Recovery (for persons with mental illness and substance use problems; see Chapter 16) and Emotions Anonymous. Many mutual support or self-help groups are formalized, with principles and books of readings. Schubert and Borkman (1991) developed a typology of self-help groups based on internal–­external dependence, locus of power, sources of leadership, and role of professionals. This typology includes unaffiliated, federated (associated with a larger organization), affiliated (subordinate to regional or national groups), managed (under professional control), and hybrid (combination of affiliated and managed) groups. For our present purposes, groups that are managed or controlled by professionals are not considered here. There are, however, other groups that are less structured but still have guiding values and a group format. Online support groups emerged when access to personal computers became widespread (Townsend, Gearing, & Polyanskaya, 2012). These groups began via email or shared bulletin boards to exchange ideas. In many instances, groups make use of internet platforms that enable live interface among group members. These groups seem to offer a high degree of anonymity, resulting in little likelihood of social repercussions (Krentzman, 2021). This anonymity makes some individuals more comfortable sharing embarrassing or sensitive information. Online groups are also valuable for people who have no groups in their area, no transportation, illness, or a physical disability, or who are institution-bound (Krentzman, 2021). In recent years, platforms such as Facebook, Twitter, YouTube, and other digital technology (e.g., Zoom) have facilitated connections for people who want to give and receive mutual support (Fortuna et al., 2022). These technologies have expanded the availability and accessibility of self-help, especially in light of the COVID-19 pandemic. Some support groups are generally public and open to anyone who would like to join; others are closed, requiring a person to make an application to the leaders of the group in order to join. One-on-one self-help or mutual support typically occurs more informally than groups and may result from connections made through attendance at self-help groups. For example, the sponsorship process that occurs in conjunction with some 12-step selfhelp models can provide additional mutual support. For example, Tonigan and Rice

17.  Peer Supports and Services 307 

(2010) found that individuals with alcohol use disorder who connected with a sponsor early in their 12-step self-help group had less use of alcohol and other substances than those that did not begin immediately working with a sponsor. Research suggests that individual supports such as sponsorship can also help the sponsor increase their self-­awareness, social skills, well-being, purpose, and meaning (McGovern, Addison, & McGovern, 2021). Overall, while there is limited research on one-to-one mutual (unpaid) peer support for SMI, the WHO (2019) has created comprehensive guidebook on providing individual peer support.

Effectiveness of Mutual Support Most of the research on mutual support/self-help groups has been descriptive, summarizing characteristics of participants and their experienced benefits. There has been limited research on the effectiveness of these groups generally, and even less when it comes to self-help groups for persons with severe psychiatric disorders (Lloyd-Evans et al., 2014; Pistrang, Barker, & Humphreys, 2008). The most recent review on self-help groups for mental health problems yielded 12 studies, of which only four had a randomized design (Pistrang et al., 2008). Seven of 12 studies showed changes, including reduced symptoms and social adjustment, with no negative effects. None of the randomized designs examined people with SMI. Markowitz (2015) conducted an 18-month longitudinal study (n = 533), surveying self-help group attendees in the United States. Participants tended to be White, middle-aged females with a variety of mental health problems. They reported small reductions in symptoms and increases in quality of life and self-­esteem (Markowitz, 2015). Central to self-help is choosing to join a program; participation cannot be dictated by the requirements of science. In addition, research has found that people continue attending support groups over time for help with coping, to be around others, and to derive hope (Markowitz, 2015). Research has also shown that longer-term participants in these groups, or those with more frequent attendance, have better outcomes (Markowitz, 2015). Participants in Markowitz’s longitudinal study who stopped attending during the study did so because they did not feel it was helping (12%), they were hospitalized (25%) or they perceived negativity in the group (14%). Selective attrition can lead to overestimation and underestimation of effects of mutual support groups when those with either extremely severe or extremely mild symptoms exit the group (Pistrang et al., 2008).

Peer-­Provided Services Peer-­provided services are delivered by people who self-­identify as individuals with mental illness and have received mental health services in the past (Fortuna et al., 2022). Unlike that in self-help groups, the peer relationship in these services is unidirectional and not mutual. A peer service provider’s function is to help others with mental illness. Three categories of services fall within this domain: peer-­operated services, peer partnerships, and peer employees. These three categories differ mainly in the amount of control that persons with mental illness have over administrative functions and decision making (Clay et al., 2005). In peer-­operated services, peers have total control over administration and decision making; in peer partnerships, peers share these responsibilities with nonpeers. Peer partnerships are considered peer-­provided services by the Center for Mental Health, where at least 51% of the board members were consumers as of 2005 (Clay et al., 2005). Peer employees have no more or less control over the services their organization

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provides than does any nonpeer employee; their responsibilities are contingent on the positions they hold within the organization.

Peer-­Operated Services Peer-­operated services are planned, operated, administered, and evaluated by individuals with mental illness (Fortuna et al., 2022; Ostrow & Hayes, 2015). These services occur within a formal organization that is a freestanding legal entity directed by peers and conforming to values of freedom of choice and peer control. Individuals without involvement in these programs are fully supervised by people with a history of mental illness. One example of these services are drop-in centers, where peers can come to engage in social, educational, and recreational activities (Fortuna et al., 2022). Peer-run respite services provide voluntary, overnight services as an alternative to hospitalization during acute mental health crisis (Ostrow & Croft, 2015). Peer-­operated services may also offer comprehensive services such as employment, housing, benefits acquisition, care coordination, advocacy groups, crisis services, and psychoeducational services (Cook et al., 2023; del Vecchio, 2022; Ostrow & Hayes, 2015). In addition, peers provide warm lines, which are telephone support systems specifically staffed by peers; these systems have been found to offer a benefit to the traditional mental health system by preventing crisis hotlines from being burdened by habitual callers who are not in crisis (Fortuna et al., 2022). Peer service programs also engage in advocacy, research, education, and technical assistance (Ostrow & Hayes, 2015). These organizations receive financial operating support from a variety of sources, including government grants, private foundations, and/or fee for service (Ostrow & Hayes, 2015). EFFECTIVENESS OF PEER-­OPERATED  SERVICES

Evaluations of peer-­operated services are mostly descriptive and focus mostly on who uses services, characteristics of the services’ programs, and implementation issues (Mowbray, Woodward, Holter, MacFarlane, & Bybee, 2009; Thieling, Swarbrick, Brice, & Nemec, 2022). Some studies have reported positive outcomes, including improved quality of life, fewer hospitalizations, increased employment, physical health, and greater satisfaction with programs (Swarbrick, 2011; Swarbrick, Gill, & Pratt, 2016). Wellness Recovery Action Planning (WRAP), a peer-based wellness management program, was summarized in Chapter 7 of this book. A systematic review and meta-­analysis of studies on WRAP has shown that WRAP participants, compared to control groups, report higher levels of recovery but have no significant changes in symptoms (Canacott et al., 2019).

Peer Partnership Services Peer partnerships are interventions in which peers share the responsibilities for operation of the services with nonpeers. For example, fiduciary responsibility for a service program may reside with a nonpeer entity. Consequently, administration and governance of the program are shared by peers and nonpeers, though primary agency of the service itself is with peers (Fortuna et al., 2022). Peer partnerships are comparable to hybrid self-help groups in which professionals have significant leadership roles. The nature of the services provided through partnership is no different than those in peer-­operated services. Peer-run programs are nonhierarchical, whereas peer partnerships are structurally less egalitarian.

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EFFECTIVENESS OF PEER  PARTNERSHIPS

There are few studies on peer partnership services. One example of partnership between peers and nonpeers is the Clubhouse model, which originated over 70 years ago and was developed by ex-­patients of a state hospital (Raeburn, Halcomb, Walter, & Cleary, 2013). The Clubhouse model is a nonclinical community in which Clubhouse members with mental illness and nonpeer staff share the responsibility of programming around holistic needs of members, with a focus on community integration through employment. The model is standardized with a fidelity measure and accreditation process (McKay et al., 2018). A systematic review of the Clubhouse model found 52 articles that include findings that this model can enhance employment outcomes, reduce hospitalization, and increase members’ quality of life (McKay et al., 2018).

Peer Employees Peer employees are individuals who self-­identify as persons with mental illness and are hired either in designated peer positions or into traditional mental health services. Designated peer positions are in some cases extensions of provider positions, such as care coordinator aides or peer specialists, or they may be peer counselors, peer advocates, peer care coordinators, recovery support specialists, or peer companions. Peers as employees offer several benefits. They have users’ perspectives on human service and health systems, can describe and demonstrate successful coping strategies, and can engage readily with other consumers (Fortuna et al., 2022). Peer employees may also offer positive role models, which can instill hope in others that recovery is possible. However, there are also concerns about consumers as providers, such as boundary issues and dual relationships. Peer employees need to be careful about treating service recipients as friends or violating confidentiality. In addition, professional and paraprofessional providers may have difficulty accepting peers as equals, in part because of the stigma of mental illness (Bellamy et al., 2017; Firmin, Mao, Bellamy, & Davidson, 2019; Voss et al., 2022). Peer employees may also require special accommodations, such as job sharing and additional supports (Jones et al., 2019). Peers have developed methods to cope with dual roles; these include obtaining support from other peers, participating in self-help groups, continuing their own mental health treatment, accessing supervisors for support, and attending training (Abraham, Erickson, Sata, & Lewis, 2022; Forbes, Pratt, & Cronise, 2022; Jenkins, Shafer, & Janich, 2020). Some people, however, do not want to receive services from peers, because they do not see peer employees as experts who are able to help them. They also may not trust peers who have made the transition to staff positions (Mowbray, 1997). Moreover, consumers may be concerned that professionals intentionally or unintentionally may have influenced peer employees to adopt professional beliefs that diminish the insights they have obtained from lived experience (Gillard, 2019). Growth in digital peer services has also been profound; a systematic review of 30 studies, including 11 RCTs on 24 distinct digital peer support interventions found that services addressed myriad areas, including self-­management, cognitive training, weight management, psychoeducation and parenting skills (Fortuna et al., 2020). Most of the interventions demonstrated feasibility, acceptability, and preliminary effectiveness, though study quality varied and most were pilot or early-stage investigations. Interestingly, more than half of the interventions reported community involvement (e.g., through focus groups or codesign) of interventions (Fortuna et al., 2020).

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Paid Peer Support Roles and Settings Peer support workers are in variety of roles and settings, with funding provided through sources such as Medicaid, VA, SAMHSA, temporary assistance to needy families (TANF), state governments, Department of Justice, drug courts, and other grants (Gagne, Finch, Myrick, & Davis, 2018). Some of these services may be facilitated through peer-­operated services or partnerships; however, many are being implemented by peer employees.

Case Management.  Peers are increasingly involved in team-based case management services for people with psychiatric disabilities at various levels of care (White et al., 2020). For example, ACT teams who serve the highest-need individuals in community settings have incorporated peer members onto their teams (Wright-­B erryman et al., 2011). Several recent programs aim to support individuals during their transition from hospitalization back into the community (Corrigan, Talluri, & Shah, 2022). Physical Health and Wellness.  Given high rates of comorbidity and early mortality, physical health interventions for individuals with SMI have proliferated. These include self-­management programs for chronic illnesses such as diabetes, smoking cessation interventions, diet and exercise programs, and health navigation services (Cabassa, Camacho, Vélez-Grau, & Stefancic, 2017). These programs include group or individual services around health literacy, health engagement, or in the case of health navigators, accompaniment to health appointments and health activities. A systematic review of peer-based health interventions for serious mental illness, including 18 articles and three randomized studies, found the strongest evidence for self-­management and navigation interventions (Cabassa et al., 2017). Mental Illness Self-­Management.  Peer-led illness self-­management programs are implemented to help individuals manage symptoms, communicate with health providers, develop recovery plans, and work toward personal recovery goals. These include both unstructured programs and manualized approaches such as Pathways to Recovery or BRIDGES (see Corrigan et al., 2022). Crisis Services.  Peers are employed on mobile crisis response teams, warmlines and hotlines, crisis stabilization, and suicide prevention (Brasier et al., 2022; Klee et al., 2019). This may include work in emergency departments or community alternatives to hospitalization such as the Living Room models (Heyland, Emery, & Shattell, 2013). The rollout of the nationwide 988 mental health crisis phone line and the accompanying funding creates additional opportunities for peers in crisis work (Canady, 2022). Employment and Education.  Peers may deliver supported employment models,  such as individual placements and support (IPS); serve as peer representative on IPS teams; support volunteer work; or provide supported education programming to ­individuals pursuing postsecondary education (Becker & Drake, 2019; Corrigan et al., 2020) Forensic Settings.  Peers work in jails, prisons, or with court systems to support justice-­involved individuals. This work may include jail-based mentoring, transition planning, connections to housing, employment, health care, and probation/parole compliance.

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Recent initiatives have provided training specifically for forensic peer specialists (Bellamy et al., 2019).

Substance Use. Peer support for people with substance use disorder is widespread (Videka et al., 2019). Peers in addiction settings lead recovery groups, support medication-­assisted treatment for opioids use disorder, and provide individual support, family support, and crisis services. Housing/Residential Services.  Peers work as staff in transitional housing, shelters, group homes, and conduct outreach to homeless individuals (Gagne et al., 2018). Established housing models such as housing first have incorporated peer support programming as adjunctive services (Stefancic et al., 2019). Primary Care.  Peers in primary care lead groups and provide psychoeducation, outreach, case management, and engagement services, along with primary care teams (Chapman, Blash, Mayer, & Spetz, 2018; Klee et al., 2019). In a newly developed veteran’s program, peer support specialists in primary care provide health coaching, facilitate connection to services, and lead health-­focused groups (Peeples et al., 2023). Antistigma and Advocacy.  Peers have an important role in addressing stigma and discrimination through training and advocacy (Cronise, Teixeira, Rogers, & Harrington, 2016). Peers lead antistigma programming and mental health advocacy events, and have leadership roles on consumer councils or advisory councils in mental health. Hospital Settings.  Some peers are employed within hospitals to provide recovery services for inpatient or intensive outpatient programming (Chapman et al., 2018; Klee et al., 2019; Videka et al., 2019). These services are similar to services provided in the community, with an emphasis on discharge/transition planning. Children and Family Services.  Peer are increasingly taking on roles to provide prevention and recovery services to children, adolescents and their families (Ojeda, Jones, Munson, Berliant, & Gilmer, 2021). This can include early intervention in high schools, therapeutic day schools, or through recreational programming in the community. Peers may also provide support to family members of persons experiencing mental illness, including parenting skills training (Gagne et al., 2018). Peer Workforce Concerns A national survey of peer specialist (n = 597) found that most are providing direct services, but some are also working in administrative, teaching, or systems-level advocacy (Cronise et al., 2016). Peer specialists are paid on average $15/ hour (Cronise et al., 2016; Daniels, Ashenden, Goodale, & Stevens, 2016) and often experienced discrimination from nonpeer colleagues (64%), leadership (30%) or service users (22%). Understandably, peer workers are more satisfied in jobs when they are respected by supervisors, colleagues, and peer service recipients, and when they have adequate training, supports, and access to career advancement (Cronise et al., 2016). The field faces scrutiny over low wages, limited advancement opportunities, and role ambiguity, suggesting a continued need for allied health professions to receive training about the value of peer support in mental health and to advocate for peer worker equity (Voss et al., 2022).

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EFFECTIVENESS OF PEER  EMPLOYEES

There is an extensive literature on the impact of peer employee services (Burke, Pyle, Machin, Varese, & Morrison, 2019; Chien, Clifton, Zhao, & Lui, 2019; Lyons et al., 2021; Smit et al., 2022; White et al., 2020). The most recent meta-­analysis of 30 RCTs with over 4,000 participants found small effect sizes in terms of symptoms, self-­reported recovery, and functioning (Smit et al., 2022). People with SMI benefited more than those with less severe mental health problems; however, quality of studies was a limitation. Lyons and colleagues (2021) examined RCTs of group interventions for mental health conditions (not exclusively SMI), finding small increases in recovery lasting up to 6 months but not clinical symptoms; most on self-­management and self-­stigma. A meta-­analysis that was limited to peer-­provided individual services similarly found small effects on self-­reported recovery, but no effect on symptoms (White et al., 2020). A review of 13 RCTs for people with SMI (n = 2,500 participants) could not make conclusions about whether peer support increased service use and decreased relapse rates (Chien et al., 2019). Given the nature of peer services, researchers might expect greater impact on hope, recovery, empowerment, and quality of life over symptoms (Bellamy et al., 2017), as has been shown in many studies. While research evidence is promising but methodologically limited, it is clear that peer services are not harmful and often are at least equally effective as those provided by nonpeers with similar education and training (Bellamy et al., 2017). Structured interventions with peers in well-­defined roles have shown more positive impact of peer support (Bellamy et al., 2017).

SUMMARY AND CONCLUSIONS Consistent with the helper therapy principle, peer services and supports offer benefits to not only service recipients but also to peer providers themselves and to mental health service delivery systems (Fortuna et al., 2022). In many instances, peer recipients derive the same level of positive outcomes from peer services and supports as from traditional mental health services, and sometimes even more positive outcomes. In addition, peer providers have enhanced their own recovery, self-­discovery, and social support systems as a result of their helper roles. Peers as providers acquire meaningful and productive ways to fill their time, achieve professional growth toward careers, and benefit from improved clinical outcomes and quality of life (Solomon, 2004). Mental health service delivery systems are better able to serve individuals in need who would otherwise not use these systems; to improve the negative attitudes of nonpeer providers who have previously endorsed the traditional belief in a poor prognosis for serious mental illness; and to obtain new perspectives on the planning, evaluation, and development of services (Barrenger, Stanhope, & Miller, 2019; Solomon, 2004). Despite these benefits, there are challenges to implementation, including role conflict and confusion, potential dual relationships, and risks of confidentiality violations. These challenges are not insurmountable, however. Suggested means of addressing these challenges include proper training and high-­quality supervision of peers; an accepting and friendly participant atmosphere; structures and opportunities for discussions among peer and nonpeer providers; use of conflict resolution methodologies; and clear organizational policies regarding these issues (Bellamy et al., 2017; Fortuna et al., 2022; Ibrahim et al., 2020; Mutschler, Bellamy, Davidson, Lichtenstein, & Kidd, 2022). In particular, training is needed for nonpeer supervisors and administrators to better understand and advocate for the role of peer support in rehabilitation settings (Foglesong et al., 2022).



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PERSONAL EXAMPLE Lindy Fox Smith Describes Her Work as a Peer Support Provider I was diagnosed with bipolar disorder in 1982, and 2 years later with alcoholism. After many hospitalizations, and participation in an alcohol rehabilitation program, my illnesses stabilized. I decided I wanted to go back to school and work in the field of mental health. In 1989, I received a master’s degree in counseling psychology. Providing services to peers has been a very positive experience for me. It has allowed me to share my story of recovery with others who were struggling with issues that I had struggled with. Sharing coping and recovery strategies with peers turned a negative experience into a positive one. It was very empowering for me to be able to work with my peers in this capacity, increasing my self-esteem and self-confidence. Because of this, I experienced greater stability in my own mental illness. In working with peers, I always respected them and saw each of them as unique individuals. They made choices and decisions for themselves because, even though we shared similar experiences, they needed to make choices specific to them. Many of the people whom I worked with found hope from my experience. I shared my recovery with them, and they felt as though they could move ahead too. Although working as a professional with peers has often been a positive experience for both the consumers and me, sometimes it has had its drawbacks. For example, one person felt some discouragement in working with me. He felt that even though we had the same illness, he could never accomplish what I had. Instead of feeling optimistic about the future, quite the opposite occurred for him. Still, I felt he could make positive changes in his life, and I continually conveyed a message of hope in the work that I did with him. This person also wanted to change our relationship into a friendship. He had a hard time viewing me as a professional. It seems inevitable that this happens from time to time. Despite the few difficulties I have had, my work as a peer provider has been very rewarding. I feel that it has been a reciprocal relationship, with benefits to both me and the persons receiving the services. Lindy Fox Smith, MA, LADC Research Associate New Hampshire–Dartmouth Psychiatric Research Center

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Index

Note. f or t following a page number indicates a figure or table. Acceptance, 58, 60 Acceptance and commitment therapy, 58–59, 148 Accessible services barriers to engagement and, 78–81, 79f care coordination and, 155, 155f housing values and, 180t, 181 mHealth technologies and, 151 overview, 56 vocational services and, 204 Accommodations, 45–46, 132, 133t–134t, 250 Accountability, 155, 155f, 180t, 181 Activity, 276–277 Addiction, 276. See also Substance use disorders (SUDs) Adherence assessment and, 105 components of illness-management programs and, 140–141 Illness Management and Recovery (IMR) program, 146 medications and, 171–172 self-determination and, 172–175 technology and, 61 Adult foster care, 177, 178t, 179 Adverse childhood experiences (ACEs), 11–12, 256 Advertising, 44 Advocacy care coordination and, 156 erasing public stigma and, 124–131, 129f, 131t family consultation and support and, 226 peer supports and services and, 311 Affect, 6–7, 25t. See also Symptoms Affiliate stigma, 41–42. See also Stigma Affirmative actions, 131–132, 133t–134t Affirming attitudes and behaviors, 44–46, 113, 117–124, 121t. See also Behavior Affordable Care Act of 2010, 41, 68 Affordable housing, 182–183. See also Housing Age, 71f, 72 Agency-sponsored scattered-site housing program, 179, 179t, 188 Alcohol use. See Substance use

Allostatic load, 272 Americans with Disabilities Act of 1990 (ACT), 45–46, 68, 132, 133t–134t Anger, 7, 37–38 Anhedonia, 6–7, 13–14 Antecedents, 248, 249f Antianxiety medications, 168t, 171. See also Medication Antidepressant medications, 167t–168t, 170, 238. See also Medication Antipsychotic medications, 166, 167t, 169–170, 237–238. See also Medication Antistigma campaigns, 128–131, 129f, 131t, 311 Anxiety/anxiety disorders. See also Diagnoses; Obsessive–compulsive disorder (OCD); Posttraumatic stress disorder (PTSD) expressed emotion (EE) in families and, 218 health and, 272 medications and, 168t, 171 overview, 3–4, 6–7, 14–15 Apathy, 241–242, 244 Assertive community treatment (ACT). See also Care coordination; Community concerns regarding, 162–163 co-occurring disorders and, 295 criminal justice system and, 266, 267–268 fostering empowerment and, 124 housing and, 187 medications and, 165 outcome research, 160, 162 overview, 62, 156, 157–159, 161t, 163 self-determination and, 175 Assertive outreach. See Intensive care coordination (ICC) Assessment care coordination and, 156, 157 cognitive adaptation training (CAT) and, 244 cognitive processing deficits and, 235–237 of the community, 89–91, 111–116, 115t core values in, 93–96, 95f delusions and, 250–251 goals and, 56–57, 87–93

395

396

Index

Assessment (cont.) of the individual, 88, 100–111, 108f methods, 96–99 overview, 85–87, 86t, 116 progress monitoring and, 91–92 rehabilitation planning and, 92–93 of the service system, 90–91 specific measures and strategies, 100–116, 108f, 115t strategies of psychiatric rehabilitation and, 56–57 supported education and, 207t, 208 supported employment and, 196t, 197 treatment planning and, 91 vocational services and, 63 Assisted outpatient treatment (AOT), 262. See also Criminal justice system At-risk mental states (ARMS), 217–218 Attentional functioning, 7, 54, 55t, 58, 237f, 242 Attention-deficit/hyperactivity disorder (ADHD), 169t, 171 Attitudes, 44–45, 113. See also Affirming attitudes and behaviors Atypical antipsychotics. See Antipsychotic medications; Medication Autonomy, 279, 285 Avoidance, 15, 38–39, 46, 120, 121t Behavior. See also Affirming attitudes and behaviors; Symptoms assessment and, 113 coping skills training and, 144t health and, 276–278 overview, 7–8 role of mental illness in criminal behavior and, 254–256 stigma and, 29, 29f, 34, 34f Behavioral counseling, 159 Behavioral family management, 221 Behavioral weight loss intervention (BWLI), 277 Beliefs, 248, 249f, 251 Benefits counseling, 196t, 205, 207t, 208 Bias, 247, 248, 257 Biological factors course of the disorder and, 20 erasing public stigma and, 127–128 medical illness and, 271t, 272 overview, 11, 211 stress–vulnerability model and, 11–12, 12f Bipolar disorder, 3, 14, 168t, 170–171. See also Diagnoses; Mood disorders Borderline personality disorder (BPD), 15 Bottom-up models, 233–235, 234f Brain stimulation therapies (BSTs), 170 Broadcasting of experience, 121t, 122. See also Disclosure Brokered care coordination, 154–155, 156, 157, 160, 161t. See also Care coordination Burden, 212–217, 213f Cardiovascular health. See Health Care coordination concerns regarding, 162–163 co-occurring disorders and, 295 goals, objectives and functions of, 155–156, 155f housing and, 190 models of, 156–160, 161t

outcome research, 160–162, 161t overview, 153–155, 163 peer supports and services and, 310 vocational services and, 196 Caregiver burden. See Burden Carers for People with Psychosis e-support (COPesupport) intervention, 224 Case management. See Care coordination Change, 107–109, 108f, 290–291 Characteristic diagnoses, 6–12, 12f. See also Diagnoses Child protective services, 228 Children and family services, 311 Choice. See also Self-determination housing values and, 180t medications and, 172 supported education and, 207t, 208 supported employment and, 196t, 197 trauma-informed care (TIC) framework and, 60 Choose–get–keep model, 208 Citizenship, 176, 180–181, 180t, 190–191. See also Community; Housing Civil commitment, 262. See also Criminal justice system Clinical care coordination, 156, 157, 161t. See also Care coordination Cognition, 7, 25, 25t, 144t. See also Symptoms Cognitive adaptation training (CAT), 159, 173–174, 243–244 Cognitive approaches, 205, 231. See also Cognitive therapy; Cognitive-behavioral therapy (CBT) Cognitive factors, 29, 29f, 34, 34f, 58, 243, 248. See also Cognitive functioning; Cognitive processing deficits Cognitive functioning. See also Cognitive factors; Cognitive processing deficits cognitive processing deficits and, 232–245, 234f, 237f, 239f health and, 273–278, 275f medical illness and, 271t self-determination and, 173–174 skills training and, 57–58 supported employment and, 205 Cognitive processing deficits. See also Cognitive factors; Cognitive functioning; Psychosis assessment and, 235–237 delusions and, 245–253, 246f, 249f interventions for, 237–245, 239f overview, 231, 232–245, 234f, 237f, 239f, 253 social disabilities and, 236–237, 237f Cognitive prosthetics, 239–240 Cognitive schemas, 117, 118 Cognitive therapy, 118, 231, 248–253, 249f, 294 Cognitive-behavioral therapy (CBT), 141–142, 245, 294 Collaboration assessment and, 93–94, 116 challenging self-stigma and, 132 fostering empowerment and, 123 medications and, 172 trauma-informed care (TIC) framework and, 60 Collateral information, 98–99 Commitment, 262. See also Criminal justice system Committed action, 59 Communication skills, 54, 54f, 55t, 274. See also Listening skills

 Community. See also Assertive community treatment (ACT); Citizenship; Community integration; Housing assessment of, 89–91 care coordination and, 155 cognitive processing deficits and, 236, 237f housing and, 183, 186 overview, 85–86 principles of psychiatric rehabilitation and, 52–53 self-determination and, 174–175 system change and, 93 Community assessment, 86, 111–116, 115t. See also Assessment Community health workers (CHWs), 282 Community integration. See also Community citizenship values and, 180t, 181 housing and, 180t, 181, 183 overview, 52 stigma and, 132 Community responder teams, 264–265. See also Criminal justice system Community-based participatory research (CBPR), 67, 70, 77–78 Compensatory strategies, 205, 237, 239f Competition, 126, 196t Comprehensive services, 289t, 292 Consequences, 248, 249f Contingencies, 58, 294 Continuity of services, 53, 155, 155f, 158. See also Care coordination Continuum model of housing, 184–185. See also Housing Conventional antipsychotic medications. See Antipsychotic medications Conviction, 245, 246f, 250 Co-occurring disorders. See also Psychiatric disabilities; Substance use disorders (SUDs) current research questions, 298–299 early clinical and research approaches, 288–289 overview, 4, 287–288, 299 recent clinical approaches, 293–298, 293t service systems and, 289–293, 289t Coordination of care. See Care coordination Coping, 20, 50–51, 221–223, 274. See also Coping skills training; Resilience Coping skills training, 57, 143, 144t, 146. See also Coping; Skills training Co-responder model, 264. See also Criminal justice system Counters to the belief, 251–253 Course, 4, 16–21, 16f, 19t, 27. See also Psychiatric disabilities Court-based diversion, 265–267, 265t. See also Criminal justice system Courtesy stigma, 34, 34f, 41–42, 216. See also Stigma Criminal justice system. See also Jails and prisons co-occurring disorders and, 296–297 helping victims of crime, 268–269 interventions for managing goals related to, 260–268, 265t overview, 24, 70, 74, 254, 269 peer supports and services and, 310–311 people with mental illness in, 256–258

Index 397 role of mental illness in criminal behavior and, 254–256 theories to explain criminal involvement and, 258–260, 260t Crisis intervention team (CIT) model, 263–264. See also Criminal justice system Crisis services, 157, 178t, 179, 263–264, 310 Critical time intervention (CTI), 159, 160, 267–268 Cross-sectional support, 56 Cultural competence, 80, 91, 115–116, 284–285 Cultural factors community-based participatory research and, 77 diversity, equity, and inclusion (DEI) and, 71–72, 71f healthcare and, 285–286 label avoidance and, 39 trauma-informed care (TIC) framework and, 60 Custodial care, 183–184. See also Housing Dangerousness, 9, 32, 254–256. See also Symptoms; Violence Decision making. See also Shared decision making (SDM) assessment and, 105–107 barriers to engagement and, 80–81 components of illness-management programs and, 140–141 health and healthcare and, 279, 285–286 medications and, 171–172 self-determination and, 172–175 Delusions, 7, 245–253, 246f, 249f Depression delusions and, 246–247 expressed emotion (EE) in families and, 218 eye movement desensitization and reprocessing and, 59 health and, 272 interpersonal functioning, 8 medications and, 167t–168t overview, 3, 6–7, 8, 13–14 Depressive disorders. See Depression; Mood disorders Descriptive stimuli, 29, 29f Determinants, 70–77, 71f Diagnoses. See also Psychiatric disabilities; Symptoms; individual diagnoses assessment and, 97, 100, 109 characteristic diagnoses, 6–12, 12f common diagnoses, 12–16 making a diagnosis, 15–16 overview, 3–4, 5–6 Diagnostic and Statistical Manual of Mental Disorders (DSM-5-TR), 3–4, 5, 6, 12, 14, 287–288 Dialectical behavior therapy (DBT), 58, 147–148 Diet, 276–277 Digital interventions. See Internet-based interventions; Mobile interventions; Technology Disabilities. See also Psychiatric disabilities assessment and, 103–105 community-based participatory research and, 77–78 overview, 4, 21–24, 26–27, 70, 81 Disability per se, 71f, 72–73 Disclosure challenging self-stigma and, 118, 119–123, 121t costs and benefits of, 122–123 impact of, 120 levels of, 120–122, 121t

398

Index

Discrimination. See also Stigma Americans with Disabilities Act of 1990 (ACT) and, 68 assessment and, 113 erasing public stigma and, 132 housing and, 188 interactions of stigma structures with types of stigma, 34, 34f overview, 29f, 33–34 Disease, mental illness as, 30–31 Disinhibition, 8, 244 Distractibility, 7, 241–242 Distress, 218, 245, 246f Diversity, equity, and inclusion (DEI) barriers to engagement, 78–81, 79f community-based participatory research and, 77–78 comparison with the majority and, 75–76 effects of social disadvantage and, 73–74 essentialism and, 74–76 identity and, 75–76 intersectionality and, 76–77 overview, 71–73, 71f, 81 Drug use. See Substance use Dual disorders. See Co-occurring disorders Dysfunctions, 6, 16–18, 16f, 19t Early intervention, 17, 18, 51, 151–152. See also Interventions Education. See also Psychoeducation challenging self-stigma and, 132 components of illness-management programs and, 140 erasing public stigma with, 125–126, 127–128, 132 overview, 22–23 peer supports and services and, 310 supported education, 205–209 Efficiency, 155, 155f Emotional support. See Social and emotional support Empathy, 139 Empirical testing, 251 Employment. See also Supported employment; Vocational services; Work Americans with Disabilities Act of 1990 (ACT) and, 68 community assessment and, 89, 90 examples of accommodations and, 133t–134t overview, 22–23 peer supports and services and, 310 treatment planning and, 91 Empowerment affirming attitudes and behaviors and, 45 assessment and, 102–103 challenging self-stigma and, 118, 123–124 changing social structures and, 131–132, 133t–134t medications and, 175 overview, vii–viii, 132 stigma and, 46–47 trauma-informed care (TIC) framework and, 60 End state of the disorder, 16, 16f, 18, 19t, 27. See also Course Endocrine disorders. See Health Engagement barriers to, 78–81, 79f care coordination and, 157 cognitive therapy of delusions and, 249–250 co-occurring disorders and, 290–291

health and healthcare and, 274, 281–286, 282f medications and, 172 mHealth technologies and, 150 Environmental factors, 11–12, 12f, 20–21, 88, 128, 211, 259–260, 260t Environmental modification, 133t–134t, 157, 240–242 Equity barriers to engagement, 78–81, 79f community-based participatory research and, 77 comparison with the majority and, 75–76 effects of social disadvantage and, 73–74 intersectionality and, 76–77 mHealth technologies and, 151 overview, 70, 81 social determinants and, 70–77, 71f supported employment and, 198–199 Errorless learning, 205, 239 Essentialism, 74–76 Ethnicity, 71, 71f, 77, 182, 198–199 Etiology, 6, 11–12, 12f Evidence-based practices (EBPs) assessment and, 114–115, 115t assessment of the service system and, 91 overview, viii–ix, 65–67, 69 self-determination and, 175 supported employment and, 204 Executive function, 235, 237f, 244 Experiential knowledge, 303, 304–305, 304t Expressed emotion (EE), 217–218, 220 Extrapyramidal side effects, 106, 167t, 169–170 Eye movement desensitization and reprocessing (EMDR), 58, 59 Fair Housing Act, 68 Family. See also Parents burden and, 212–216, 213f caregiver burden and, 212–216, 213f experience of mental illness by, 211–218, 213f family interventions, 220–227, 220t history, 20 housing and, 178t needs of, 218–220, 228–230 overview, 85–86, 211–212, 230 positive aspects of caregiving and, 216–217 roles in psychiatric rehabilitation and, 64 stigma and, 41–42 Family consultation and support, 220t, 225–227 Family interventions, 211, 229, 295. See also Family psychoeducation; Multifamily groups Family psychoeducation. See also Psychoeducation assertive community treatment (ACT) and, 158 early interventions and, 151 overview, 59, 220–225, 220t, 230 wellness self-management and, 152 Family systems consultation. See Family consultation and support Family-centered decision making (FCDM), 285–286 Family-to-Family (FTF) education program, 222–223, 225 Fidelity, 66, 90–91, 114–115, 115t Financial factors, 180t, 181, 182–183, 203, 257–258. See also Poverty Fitness to stand trial, 261. See also Criminal justice system Following skills, 54, 55t. See also Listening skills

Index 399  Forensic assertive community treatment (FACT), 266, 267–268, 297. See also Assertive community treatment (ACT) Functional homelessness, 177, 178t. See also Housing Functioning, 69, 103–105

Gastrointestinal disorders. See Health Gender, 60, 71f, 72 Generalization of skills, 57. See also Skills training Genetic factors, 11, 20, 271t, 272 Genomewide association (GWA) studies, 272 Goals assessment and, 87–93, 94–95, 95f, 100–101, 116 care coordination and, 155–156, 155f criminal justice system and, 260–268, 265t erasing public stigma and, 126 family disagreement regarding, 222 focus on in rehabilitation, 50 goal setting, 56–57 strengths-based perspective and, 25 supported education and, 206 Grandiose delusions, 246. See also Delusions Group home, 178t, 179, 184–186, 188–189. See also Housing Group-based interventions, 119, 143–144, 145t, 158. See also Multifamily groups; Skills training; Social skills training Halfway house, 184–185, 188–189. See also Housing Hallucinations, 7, 144t Harm reduction approaches, 60, 187, 297–298 Health. See also Healthcare biological impact and, 272 overview, 23, 270–271, 271t, 286 peer supports and services and, 310 social and cognitive disabilities and, 273–278, 275f technology and, 61 treatment and services effects on, 278–281, 281t Health literacy, 273–274 Healthcare. See also Health barriers to engagement and, 78–81, 79f biological impact and, 272 modifiable health behaviors and, 276–278 overview, 286 social and cognitive disabilities and, 273–278, 275f social factors and, 274, 276, 281–286, 282f stigma and, 35–36, 40–41, 46–47, 279 treatment and services effects and, 278–281, 281t Helper therapy principle, 303, 304t, 305 Homelessness, 177. See also Housing Hope, 102–103 Hospitalization, 177, 178t, 179, 311 Housing. See also Citizenship; Community care coordination and, 190 factors influencing, 182–183 housing assistance, 186–187, 187t, 190 models of, 183–188, 187t overview, 176, 190–191 peer supports and services and, 311 research on housing interventions, 188–190 settings and arrangements for, 177–179, 178t–179t values and, 180–181, 180t Humility, 91, 115–116, 284–285 Hydraulic theory of social control, 258 Hypomania, 8, 14

Identity, 75–77 Illness self-management. See also Wellness selfmanagement components of illness-management programs and, 139–148, 142t, 144t, 145t overview, 135, 136, 152 peer supports and services and, 310 relapse prevention and, 291 supported employment and, 199–202, 201t Immunity-related disorders. See Health Inactivity, 276–277 Independent living, 22, 105, 179t Indiscriminate disclosure, 121t, 122. See also Disclosure Individual placement and support (IPS) model, 114–115, 115t, 197–198, 204, 207–209, 207t Information from others, 98–99 Information processing, 173–174, 232–233 Inpatient treatment, 61–62, 177, 178t, 179, 270 Insomnia, 168t–169t, 171 Institutional policies, 39–40, 40f Instrumental support, 54–56 Integrated psychological therapy (IPT), 243 Integrated services. See also Service system cognitive processing deficits and, 238, 242–245 co-occurring disorders and, 289t, 290 healthcare and, 280–281, 281t overview, 53 supported education and, 207–208, 207t vocational and mental health services, 63, 196, 196t Intensive care coordination (ICC), 156, 159, 160, 161t. See also Care coordination Intensive case management, 186–187, 187t Internet-based interventions, 142–143, 224, 230, 306. See also Mobile interventions; Technology Interpersonal functioning. See also Social functioning; Symptoms health and, 274 life goals and, 23 overview, 8–9 problem solving and, 143–144, 145t, 243 social disadvantage and, 24–25 strengths-based perspective and, 25–26, 25t treatment planning and, 91 Intersectionality, 42–43, 76–77 Interventions. See also Early intervention barriers to engagement and, 79f, 80–81 for cognitive processing deficits, 237–245, 239f criminal justice system and, 260–268, 265t helping victims of crime, 268–269 medical illness and, 271t parenthood-specific education and support, 228–230 Interviews. See also Assessment diagnosis and, 109 information from others and, 98 medication and, 106 overview, 96–97, 104 symptoms and, 110 Involuntary commitment, 262. See also Criminal justice system Jail-based diversion, 265–266, 265t. See also Criminal justice system Jails and prisons. See also Criminal justice system peer supports and services and, 310–311 postbooking diversion programs and, 265–267, 265t

400

Index

Jails and prisons (cont.) role of mental illness in criminal behavior and, 254–258 services within, 267 social disadvantage and, 24 Job clubs, 194t, 195. See also Vocational services Justice system involvement. See Criminal justice system Label avoidance, 38–39, 46, 216 Labels, 30–31, 34, 34f Language, ix–x, 74 Law, 67–68, 174. See also Criminal justice system Legal interventions, 296–297. See also Criminal justice system Life events, 11–12, 12f Life goals, 21–24, 27, 44. See also Goals Lifespan, 270 Lifestyle factors, 276–278 Listening skills, 54, 54t, 55t, 60. See also Communication skills Literal homelessness, 177, 178t. See also Housing Lithium. See Mood stabilizers Longitudinal services, 56 Long-term retention, 289t, 292 Major depression, 3, 13–14. See also Depression; Diagnoses Management, wellness. See Wellness self-management Management of care. See Care coordination Mania, 8, 14, 246–247 Marginal homelessness, 178t Mass media, 43–44 Measurement and Treatment Research to Improve Cognition in Schizophrenia (MATRICS), 232, 235–237 Medical illness, 270–271, 271t. See also Health Medical model, 30–31 Medication adherence and, 61 antianxiety medications, 168t, 171 antidepressant medications, 167t–168t, 170 antipsychotic medications, 166, 167t, 169–170 assessment and, 105–106 cognitive processing deficits and, 232, 237–238 components of illness-management programs and, 140–142 co-occurring disorders and, 296 decisions regarding, 171–172 early interventions and, 151 effects of, 165–171, 167t–169t health and, 274, 278–279 historical perspectives, 165–166 housing and, 177 Illness Management and Recovery (IMR) program, 146 mood stabilizers, 168t, 170–171 overview, 164, 175 psychostimulants, 169t, 171 relapse prevention and, 141–142 roles for practitioners, 164–165 sedatives and hypnotics, 168t–169t, 171 self-determination and, 172–175 supported employment and, 205 Memory, 58, 237f, 242 Mental health courts, 266–267. See also Criminal justice system

Mental health services, 53, 78–81, 79f. See also Integrated services; Service system Mental illness stigma, 30–31. See also Stigma Mental-health-based specialized response, 263. See also Criminal justice system mHealth technologies. See Mobile interventions; Technology Mindfulness, 58, 140 Mobile interventions. See also Internet-based interventions; Technology family-based education and, 224 overview, 61, 148–151 parenthood-specific education and support, 230 relapse prevention and, 142–143 supported education and, 206 Modifiable health behaviors, 276–278 Monitoring, 156, 157. See also Progress monitoring Monoamine oxide inhibitors (MAOIs). See Antidepressant medications Mood disorders, 3, 13–14. See also Bipolar disorder; Depression; Diagnoses Mood stabilizers, 168t, 170–171, 238. See also Medication Motivation, 7–8, 25, 25t, 291. See also Symptoms Motivational interviewing, 94, 139–140, 293–294 Multidisciplinary teams. See Team approach Multifamily groups, 59, 158, 221, 226–227. See also Group-based interventions Muscular/skeletal conditions. See Health Mutual support groups, 305t, 306–307 Narcolepsy, 169t, 171 Narrative strategies, 117–118, 119, 132 Nation of origin, 71, 71f National Alliance for the Mentally Ill (NAMI), 128, 129, 130, 182, 221–222 National Mental Health Awareness Campaign (NMHAC), 129, 130 Needs assessment, 100–101, 218–220. See also Assessment Neurological disorders. See Health Neuropsychology, 159 News media, 43–44 Nonadherence, 171–172 Not guilty by reason of insanity (NGRI), 261–262. See also Criminal justice system Nutrition, 276–277 Obesity, 276–277 Objective burden, 212–215, 213f. See also Burden Observations, 99, 104. See also Assessment Obsessive–compulsive disorder (OCD), 3–4, 14–15. See also Anxiety/anxiety disorders; Diagnoses Occupational therapy, 159 Olmstead v. L. C. (1999), 46, 68 Online interventions. See Internet-based interventions; Mobile interventions Onset of the disorder, 16–17, 16f, 151–152. See also Course Outpatient civil commitment, 262. See also Criminal justice system Paranoia, 245–247. See also Delusions Parenting skills, 228–230 Parents, 41–42, 212–216, 213f. See also Family



Index 401

Parents with psychiatric disabilities, 228–230 Partial hospitalization, 63–64. See also Settings for psychiatric rehabilitation Pathways to Housing, 187 Patient Protection and Affordable Care Act of 2010, 41, 68 Patient-centered medical homes (PCMHs), 281, 281t Peer coaching, 209 Peer health navigators (PHNs), 282–284 Peer supports and services assertive community treatment (ACT) and, 158–159 components of illness-management programs and, 144, 146 family-based education and, 221–223 historical perspectives, 300–303 overview, 300, 303, 304t, 305t, 307–313 roles in psychiatric rehabilitation and, 65 theoretical bases for, 303–305 trauma-informed care (TIC) framework and, 60 types of peer services, 305–312, 305t wellness self-management and, 138–139 Peer-provided care coordination, 156, 159, 161t. See also Care coordination Perception, 7, 25, 25t. See also Symptoms Permanent supported housing (PSH), 186. See also Supported housing Persecutory delusions, 245–246. See also Delusions Personality disorders, 15 Personality models, 259 Person-centered goals, 94–95, 95f. See also Goals Person–environment focus, 157 Person-focused interventions, 157 Person–place framework, 259–260, 260t Pharmacological interventions. See Medication Physical health. See Health Planned lifetime assistance, 220t, 227 Planning. See Treatment planning Police contact, 262–265. See also Criminal justice system; Jails and prisons Police-based specialized mental health response, 263, 264. See also Criminal justice system Police-based specialized response, 263. See also Criminal justice system Policy, 67–68, 77–78, 174, 288. See also Affordable Care Act of 2010; Americans with Disabilities Act of 1990 (ACT) Positive psychology, 137–138 Postbooking diversion programs, 265–267, 265t. See also Criminal justice system Posttraumatic stress disorder (PTSD), 3, 14–15, 59, 111. See also Anxiety/anxiety disorders; Diagnoses Poverty, 70, 73–74, 151, 182–183, 258. See also Financial factors Prearrest diversion programs, 263. See also Criminal justice system Prebooking programs, 263. See also Criminal justice system Preferences, 196t, 197 Prejudice. See also Stigma assessment and, 113 erasing public stigma and, 132 essentialism and identity and, 74–75 overview, 29f, 33–34 types of stigma and, 34, 34f Preoccupation, 245, 246f, 250

Prevention skills, 274, 275f Primary care services, 35–36, 53, 280–281, 281t, 311. See also Healthcare Principles of psychiatric rehabilitation, 49–53, 49f. See also Psychiatric rehabilitation Prisons. See Jails and prisons Problem-solving skills, 54, 60, 236, 243 Prodrome, 16–17, 16f Professional education, 174–175. See also Training for practitioners Progress monitoring, 91–92, 156. See also Assessment Protest, 124–125 Providers, 79–80, 79f, 271t Psychiatric diagnoses. See Diagnoses Psychiatric disabilities. See also Co-occurring disorders; Course; Diagnoses; Disabilities; individual diagnoses assessment and, 103–105 cognitive processing deficits and, 232–245, 234f, 237f, 239f family experience of, 211–218, 213f housing and, 177 overview, ix–x, 3–5, 21–24, 26–27, 70, 81 Psychiatric medications. See Medication Psychiatric rehabilitation community-based participatory research and, 77–78 disabilities and, 21–24 overview, vii, ix–x, 26–27, 48, 49f, 69 principles, 49–53, 49f roles, 49f, 64–65 settings, 49f, 61–64 strategies, 49f, 54–61, 54t, 55t Psychoeducation. See also Education; Family psychoeducation challenging self-stigma and, 117, 118–119 components of illness-management programs and, 140 early interventions and, 151 family interventions, 220–225, 220t, 226 Illness Management and Recovery (IMR) program, 146 parenthood-specific education and support, 228–230 technology and, 61 Psychological reactance, 125, 138 Psychopharmacology. See Medication Psychosis. See also Cognitive processing deficits; Schizophrenia dangerousness and, 9 delusions and, 245–253, 246f, 249f early interventions and, 151–152 expressed emotion (EE) in families and, 217–218 medications and, 166, 167t, 169–170 overview, 7, 231, 253 schizophrenia and, 12–13 Psychosocial factors, 20, 88, 128, 132 Psychosocial functioning, 19–20, 236, 237f Psychostimulants, 169t, 171. See also Medication Psychotropic medication. See Medication Public stigma. See also Stigma erasing, 124–131, 129f, 131t family experience of, 216 impact of, 35–36 interactions of stigma structures with types of stigma, 34, 34f overview, 28, 46, 132

402

Index

Quality of life. See also Wellness self-management assessment and, 105 family experience of, 214 focus on in rehabilitation, 50 housing and, 180t, 184 overview, 22, 135 supported employment and, 199–202, 201t Questionnaires, 97–98, 109. See also Assessment Race, 71, 71f, 75, 77, 198–199 Real-world observations, 99. See also Assessment Recovery. See also Wellness self-management affirming attitudes and behaviors and, 44, 45 assessment and, 102–103 community-based participatory research and, 77–78 criteria for, 18–20 medications and, 175 overview, vii–viii, 49–50, 135, 152 recovery plan, 91 technology and, 61 Recreation, 23–24, 63–64 Reflecting skills, 54, 55t. See also Listening skills Rehabilitation, vocational. See Vocational services Rehabilitation care coordination, 156, 161t. See also Care coordination Rehabilitation interventions, 238–245, 239f Rehabilitation needs, 92–93 Rehabilitation plans assessment and, 92–93, 116 collaboration and, 93–94 housing and, 176 overview, 91 person-centered goals and, 94–95, 95f Relapse prevention, 59–60, 61, 141–142, 142t, 146, 291 Relationship factors, 20, 23, 24–25, 91, 274 Relatives. See Family Religion, 23–24, 71, 71f. See also Spiritual life Reorganization, 237, 239f, 240–242 Repeated practice, 239, 239f Residential services. See also Housing criminal justice system and, 262 overview, 61–62, 177, 178t, 179, 183, 184–186 peer supports and services and, 311 planned lifetime assistance programs and, 227 Resilience, 50–51, 151. See also Coping Resistance, 139, 171–172 Respiratory illness. See Health Respite care, 220t, 227 Restoration, 237, 239f Restorative justice, 269 Rights, 180t, 181 Role functioning, 104, 252–253. See also Social functioning Role plays, 57, 99. See also Skills training Roles in psychiatric rehabilitation, 49f, 64–65. See also Psychiatric rehabilitation Scattered-site programs, 179, 179t, 188 Schizoaffective disorder, 13. See also Schizophrenia Schizophrenia. See also Diagnoses; Psychosis affirming attitudes and behaviors and, 45 biological factors, 11 caregiver burden and, 214 cognitive processing deficits and, 232–245, 234f, 237f, 239f

criteria for recovery and, 19–20 family’s experience of, 59 medications and, 166, 167t, 169–170 overview, 3, 12–13, 231 role of mental illness in criminal behavior and, 254–256 symptoms and, 8 Schizophreniform disorder, 13. See also Schizophrenia Second-generation antipsychotic medications. See Antipsychotic medications; Medication Secrecy, 120–121, 121t. See also Disclosure Sedatives and hypnotics, 168t–169t, 171. See also Medication Selective disclosure, 121–122, 121t. See also Disclosure Selective serotonin reuptake inhibitors (SSRIs). See Antidepressant medications; Medication Self-determination affirming attitudes and behaviors and, 44, 45 assessment and, 103, 105 community and service system and, 52–53 components of illness-management programs and, 140–141 enhancing, 172–175 medications and, 172 overview, vii Self-determination theory (SDT), 285 Self-efficacy, 36–37, 139, 273–274 Self-esteem, 200 Self-help components of illness-management programs and, 144, 146 historical perspectives, 300–301 overview, 64 peer supports and services and, 304–305, 305t, 306–307 Self-management. See also Wellness self-management components of illness-management programs and, 139–148, 142t, 144t, 145t early interventions and, 151–152 health and, 273–274 historical perspectives, 135–139 mHealth technologies and, 148–151 overview, 135, 152 peer supports and services and, 310 relapse prevention and, 291 self-determination and, 172–175 theories to explain criminal involvement and, 258 Self-report questionnaires, 97–98, 109. See also Assessment Self-stigma. See also Stigma challenging, 117–124, 121t family experience of, 41–42, 216 identity and, 76 impact of, 36–38, 38f interactions of stigma structures with types of stigma, 34, 34f overview, 28, 46, 132 paradox of trying to fix, 124 Service system. See also Integrated services assessment of, 90–91, 113–116, 115t barriers to engagement and, 78–81, 79f co-occurring disorders and, 289–293, 289t, 298–299 in jails and prisons, 267 medical illness and, 271t principles of psychiatric rehabilitation and, 52–53

 social factors that interfere with healthcare service engagement and, 281–286, 282f system change and, 93 Settings for psychiatric rehabilitation, 49f, 61–64, 78–79, 79f. See also Hospitalization; Inpatient treatment Sexual orientation, 71f, 72 Shared decision making (SDM). See also Decision making assessment and, 94 barriers to engagement and, 80–81 co-occurring disorders and, 293–294, 299 healthcare and, 285–286 overview, 56 person-centered goals and, 94 self-determination and, 173–174, 175 wellness self-management and, 138 Side effects of medications, 105–106, 167t, 169–170, 278–279. See also Medication Skills training. See also Coping skills training; Social skills training care coordination and, 157 components of illness-management programs and, 143–144, 144t, 145t overview, 57 self-determination and, 173 Sleep problems, 168t–169t, 171 Smartphones, 149–150. See also Mobile interventions; Technology Smoking, 277–278 SOAR (schizophrenia online access to resources), 224 Social and emotional support, 303, 304, 304t Social avoidance, 120, 121t. See also Avoidance; Disclosure Social comparison theory, 303, 304t, 305 Social determinants, 70–77, 71f Social disadvantage, 24–25, 73–74, 78–81, 79f Social factors, 31–33, 243, 258, 271t, 281–286, 282f Social functioning. See also Interpersonal functioning affirming attitudes and behaviors and, 45 assessment and, 88, 104 cognitive adaptation training and, 159 cognitive processing deficits and, 236–237, 237f health and, 273–278, 275f medical illness and, 271t problem solving and, 236, 237f social skills, 88, 243 stigma and, 29–30 Social justice, 70, 75–76 Social learning theory, 303, 304t, 305 Social Security Disability Insurance (SSDI), 182 Social skills training, 57, 91, 143–144, 145t, 146. See also Skills training Social structures, 40–41, 131–132, 133t–134t Social support, 55–56, 274, 276 Social-cognitive rehabilitation, 242–245 Social/personality psychology models, 259 Special education, 207. See also Education Spiritual life, 23–24, 71, 71f Stage theories, 233–235, 234f Stages of change, 107–109, 108f, 290–291 Stagewise treatments, 289t, 290–291 Stereotypes. See also Stigma assessment and, 113 essentialism and identity and, 74–75

Index 403 intersectionality and, 76 overview, 29f, 31–33 types of stigma and, 34, 34f Stigma affirming attitudes and behaviors instead of, 44–46 caregiver burden and, 214 challenging self-stigma and, 117–124, 121t changing social structures and, 131–132, 133t–134t effects of social disadvantage and, 73 erasing public stigma, 124–131, 129f, 131t family experience of, 41–42, 216, 218 healthcare and, 279 identity and, 76 impact of public stigma, 35–36 impact of self-stigma, 36–38, 38f interactions of stigma structures with types of stigma, 34, 34f intersectionality and, 42–43 label avoidance, 38–39 mass media and, 43–44 mHealth technologies and, 151 opposite of, 44–46 overview, 28, 29–34, 29f, 46–47, 132 peer supports and services and, 311 role of mental illness in criminal behavior and, 254–256 structural stigma and, 39–41, 40f Strategies of psychiatric rehabilitation, 49f, 54–61, 54t, 55t. See also Psychiatric rehabilitation Strengths-based care coordination, 156, 161t. See also Care coordination Strengths-based perspective affirming attitudes and behaviors and, 44–46 assessment and, 88, 101–102 community-based participatory research and, 77 overview, 5, 25–26, 25t, 27, 50 Stress, 11–12, 12f, 20, 199–200 Structural stigma, 34, 34f, 39–41, 40f. See also Stigma Subjective burden, 212–215, 213f. See also Burden Substance Abuse and Mental Health Services Administration (SAMHSA), 128–129, 129f Substance use. See also Substance use disorders (SUDs) assessment and, 103, 110–111 course of the disorder and, 21 dangerousness and, 9 housing and, 187 motivational interviewing and, 139 overview, 27, 277–278 peer supports and services and, 311 relapse prevention and, 59–60 role of mental illness in criminal behavior and, 255 Substance use disorders (SUDs). See also Co-occurring disorders; Substance use current research questions, 298–299 early clinical and research approaches, 288–289 overview, 287–288 recent clinical approaches, 293–298, 293t service systems and, 289–293, 289t Supervised housing programs, 179t, 188–189 Supported education, 205–209, 207t. See also Education Supported employment. See also Employment; Vocational services challenges in, 203–205 concerns regarding, 202–203

404 Supported employment (cont.) early interventions and, 151 fidelity assessment and, 114–115, 115t implementing, 200–202, 201t outcome research, 208 overview, 62–63, 194t, 195–205, 196t, 201t, 209–210 treatment planning and, 91 Supported housing, 183, 186–190, 187t. See also Housing Symptoms. See also Affect; Behavior; Cognition; Dangerousness; Diagnoses; Interpersonal functioning; Motivation; Perception assessment and, 100, 110 caregiver burden and, 214 cognitive rehabilitation and, 242 course of the disorder and, 16–18, 16f, 19t criteria for recovery and, 19–20 early interventions and, 151–152 expressed emotion (EE) in families and, 218 health and, 272 housing and, 176 insight into, 10 making a diagnosis, 15–16 management of, 20 monitoring, 61 overview, 6–10 Targeted programs, 238–242, 239f Task analysis, 111–112 Team approach, 64–65, 78, 116, 158 Technology. See also Internet-based interventions; Mobile interventions online support groups, 306 overview, 61 relapse prevention and, 142–143 research on, viii–ix in targeted cognitive rehabilitation, 242 Tetracyclic medications. See Antidepressant medications Thresholds rehabilitation center, 51, 64, 228–230 Training for practitioners, 66, 79–80, 284, 302 Trajectory of the disorder, 16, 16f, 17, 27. See also Course Transition planning, 267–268 Transitional employment, 62, 194–195, 194t. See also Employment; Vocational services Transitional group home, 184–185, 188–189. See also Housing Trauma, 60–61, 111, 128, 269 Trauma-informed care (TIC) framework, 60–61, 269

Index Treatment, 38–39, 46. See also Interventions; Treatment planning Treatment adherence. See Adherence Treatment planning assessment and, 105–107, 116 care coordination and, 156, 157 cognitive adaptation training (CAT) and, 244 collaboration and, 93–94 components of illness-management programs and, 140–141 health and, 279 overview, 91 rehabilitation planning and, 92–93 Tricyclic medications. See Antidepressant medications; Medication Twelve-step programs, 294–295 Urinary/reproductive disorders. See Health Values acceptance and commitment therapy and, 58–59 assessment and, 93–96, 95f barriers to engagement and, 80 housing and, 180–181, 180t overview, 69 Vicarious stigma, 41–42, 216. See also Stigma Victimhood, 75–76 Victimization, 268–269 Violence, 9, 215–216, 254–256 Vocational functioning, 104 Vocational services. See also Employment; Settings for psychiatric rehabilitation; Supported employment; Work cognitive processing deficits and, 244–245 early interventions and, 151 examples of accommodations and, 133t–134t integrated services and, 53 overview, 62–63, 209–210 types of vocational rehabilitation, 193–195, 194t Weight management, 276–277, 278 Wellness self-management. See also Quality of life; Recovery; Self-management historical perspectives, 136–138 overview, 135, 152 peer supports and services and, 310 self-determination and, 172–175 technology and, 61 Work, 192, 193–195, 194t. See also Employment; Supported employment; Vocational services