Just Don't Get Sick: Access to Health Care in the Aftermath of Welfare Reform 9780813541457

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Just Don’t Get Sick

Critical Issues in Health and Medicine Edited by Rima D. Apple, University of Wisconsin–Madison, and Janet Golden, Rutgers University, Camden Growing criticism of the U.S. health care system is coming from consumers, politicians, the media, activists, and health care professionals. Critical Issues in Health and Medicine is a collection of books that explores these contemporary dilemmas from a variety of perspectives, among them political, legal, historical, sociological, and comparative, and with attention to crucial dimensions such as race, gender, ethnicity, sexuality, and culture.

Just Don’t Get Sick Access to Health Care in the Aftermath of Welfare Reform Karen Seccombe and Kim A. Hoffman

Rutgers University Press New Brunswick, New Jersey, and London

Library of Congress Cataloging-in-Publication Data Seccombe, Karen, 1956– Just don’t get sick : access to health care and the aftermath of welfare reform / Karen Seccombe and Kim A. Hoffman. p. ; cm. — (Critical issues in health and medicine) Includes bibliographical references and index. ISBN 978-0-8135-4090-0 (hardcover : alk. paper) ISBN 978-0-8135-4091-7 (pbk. : alk. paper) 1. Health care reform—Oregon. 2. Insurance, Health—Oregon. 3. Health services accessibility—Oregon. I. Hoffman, Kim A., 1970– II. Title. III. Series. [DNLM: 1. Health Services Accessibility—Oregon. 2. Health Care Reform—Oregon. 3. Insurance, Health—Oregon. 4. Interviews—Oregon. 5. Social Welfare—Oregon. 6. Socioeconomic Factors—Oregon. W 76 S444j 2007] RA395.A4J8744 2007 362.1'042509795—dc22 2006035925 A British Cataloging-in-Publication record for this book is available from the British Library Copyright © 2007 by Karen Seccombe and Kim A. Hoffman All rights reserved No part of this book may be reproduced or utilized in any form or by any means, electronic or mechanical, or by any information storage and retrieval system, without written permission from the publisher. Please contact Rutgers University Press, 100 Joyce Kilmer Avenue, Piscataway, NJ 08854–8099. The only exception to this prohibition is “fair use” as defined by U.S. copyright law. Manufactured in the United States of America

Contents

List of Figures and Tables Acknowledgments

vii ix

Chapter 1

Introduction: Access to Health Care and Welfare Reform

Chapter 2

Health Status and Health Changes

28

Chapter 3

Insurance Coverage

63

Chapter 4

Other Access and Barriers to Health Care

90

Chapter 5

Do Families Get the Health Care They Need?

114

Chapter 6

Worry, Planning, and Coping

136

Chapter 7

Facing Reality

163

Appendix

185

Bibliography

191

Index

205

1

Figures and Tables

Figures

2.1 Norm-based scoring of SF-12 Profile, TANF leavers 3.1 Insurance trends over the year following Wave 1 interview Appendix.1 Sampling

34 68 186

Tables

1.1 Characteristics of Study Sample

20

2.1 Physical and Mental Health Status

36

2.2 Health Condition Changes over Last Six Months, Wave 2

38

2.3 Weight, Obesity, and Food Security

46

2.4 Children’s Health

53

3.1 The Uninsured

71

3.2 Insurance Coverage and OHP

79

3.3 Insurance Coverage and Employer-Sponsored Insurance

85

4.1 Distances and Transportation Barriers to Seeking Health Care, Wave 1

95

4.2 Personal Barriers: Bills and Debt, Telephone, Child Care

100

4.3 Providers and Services

104

4.4 Providers and Services by Race and Ethnicity

106

4.5 Employment Constraints

110

5.1 Respondent’s and Children’s Health Care Use

121

5.2 Delayed or Forgone Care

124

5.3 Dental Care

129

5.4 Use of Services and Delayed or Forgone Care, by Race and Ethnicity, Wave 2 6.1 Worry Appendix.1

Response, Cooperation, Refusal, and Contact Rates

133 143 187

Acknowledgments

A project of this magnitude involves the assistance of many people, and we are appreciative of all our colleagues who gave considerable time and effort to this project. Co-investigators included Heather Hartley, Jason Newsom, and Clyde Pope, who were integral to all aspects of data collection and analysis. We worked closely together for over three years so that we could better understand what happens to the health of families and their access to health care after they leave welfare for work. Their contributions are woven together here in this book. We also express our appreciation to the many students associated with the School of Community Health and the Center for Public Health Studies who contributed countless hours helping us conduct quantitative and qualitative interviews, transcribing and coding data, tracking respondents in the far corners of Oregon, analyzing the mounds of data that we collected, and assisting in drafting the final report for our funding organization. These students include Christina Albo, Gwen Marchand, Cathy Gordon, Tosha Zaback, Richard Lockwood, Valerie Nias, and Terri Brockel. Karen McNeil, Donna Harris, Beth Bull, and Wayne McFetridge provided important staff support at our university, and Marcus Vincent generously donated many hours to help us with programming and other technical tasks. As usual, Richard Meenan provided the always appreciated editing assistance and help with organizing the tables and references. We also thank the Agency for Healthcare Research and Quality (AHRQ) for its funding of this project, and Pamela Owens, our project officer at AHRQ. Without their vote of confidence a study of this magnitude would have been impossible. We also want to acknowledge the key staff at Adult and Family Services (AFS) and the Office of Medical Assistance Programs (OMAP) for providing us with access to their administrative data that allowed our ideas to come to fruition. Most of all, we extend our warmest appreciation and thanks to all the women and men who generously gave of their time to participate in this study. We are honored to represent your voices and hope that others will listen closely to them. You have much to add to discussions about meaningful welfare reform.

Just Don’t Get Sick

Chapter 1

Introduction Access to Health Care and Welfare Reform

Let us introduce “Molly,” a young woman who recently left welfare for work. We interviewed her in her home in a small community at the end of 2002 and then again at the end of 2003 to see how she had been faring since leaving welfare. The focus of our conversation was on health—has Molly been able to get the health care that she and her family need after leaving the security of welfare that had provided for her medical insurance? Molly touched us by the “ordinariness” of her struggle. Stories like hers are common. She is not a “poster child.” She had no innovative methods of negotiating the welfare system, she did not rise victoriously as a shining example of how welfare reform can work, nor did she triumph and find health care that fit her needs. Instead, her story is a familiar one—struggling to meet her family’s needs without the benefit of experience navigating the intricacies of the health care and welfare systems, getting lost through the cracks, and facing massive health care bills as a result. We met Molly at her one-bedroom apartment in a small town located on the Oregon coast. The relentless rain coming down added a sense of gloom to the largely run-down fishing community that had fallen on hard economic times in recent years. The downtown area consisted of boarded-up buildings, nudged between other “mom-and-pop” businesses that were fighting for their existence. Unemployment is high in her community, as is the rate of poverty: 17 percent live below poverty, compared to nearly 12 percent nationally. In sharp contrast to the depressed nature of the town was Molly, a young and energetic woman with a fresh face, body piercings, and a friendly smile.

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Yet her eyes were those of a much older woman, a reflection of some of the difficulties she has faced in her short life. Her eyes lit up, however, when speaking about her spunky two-year-old daughter, whom she loved passionately. Molly also told us about the discrimination she had experienced as a young mother whose personality and style of clothing did not fit the conservative ideology and customs of her town. She is an intelligent, sensitive person, and it was obvious that the conflict surrounding those experiences pained her. Molly had been off welfare, the cash assistance program also known as Temporary Assistance for Needy Families (TANF), for about eight months. We talked about her participation in the welfare-to-work program, of which she had taken full advantage for the short time she was on TANF. She seemed proud that through her use of available classes and her willingness to volunteer, she had received a free computer and started a new, temporary job at the county courthouse. Molly was cautiously hopeful about her future. She had mostly positive things to say about her limited experiences with TANF and with the Oregon Health Plan (OHP), Oregon’s version of Medicaid. While she expressed her gratitude for having OHP/Medicaid, neither she nor her daughter had made much use of it. We got the impression that she just did not have much experience with health care systems in general. It was nice to have medical benefits, but she and her daughter were healthy, so what it really offered was peace of mind. When asked whether she worried about losing health insurance, she replied in her soft, melodic voice, “I don’t ever think about anything like that. I’m a day-to-day person and I like to think positive about everything.” She continually tried to frame her life in confident and optimistic terms, a strategy that ultimately betrayed her naïveté. At the first interview, Molly was still eligible for one year of transitional OHP/Medicaid benefits that are provided under the new welfare reform policies for families leaving welfare for work. Because she was on OHP/Medicaid, and she and her daughter were relatively healthy, she was not particularly concerned about health issues or how to pay for health insurance when her transitional medical benefits would expire in a few months. One year later we met Molly a second time. Although she made a valiant attempt to offer the same cheerful tone as before, Molly had changed notably. The previous year she had been hopeful and optimistic, but her experience with health care had been limited and her opinions about it were largely unformed. Now health care was the center of her story. Molly was full of passion, anger, and frustration. What was the cause of her changed demeanor? On the surface, recent events seemed promising: she had received a raise at her temporary job

Introduction

3

at the county courthouse. The result, however, was catastrophic. Molly and her daughter lost their health insurance: “They cut me off. I got like a little, tiny raise and they just cut me off everything. They cut me off OHP, and they cut me off of my food stamps. They stopped everything, all at the same time.” “They” also cut her daughter off of OHP/Medicaid. The raise that caused all of these sudden changes was fifty cents an hour at a temporary job that did not offer health insurance benefits. Molly called her caseworker out of concern for her daughter’s uninsured status, but did not find any help or support: I called her and I asked her about it and it was like they just kind of gave me as little information as they could and just wanted me off the phone thing. And I didn’t know if it was because they were doing it to a lot of people and a lot of people were calling and saying “Hey, what’s going on” or whatever. But I just kind of felt like I got rushed through because I was like “Ok, it’s fine that you cut me off, but why her,” you know? And she said, “Well, it covers both of you so we had to cut both of you off.” Whatever. So I’m like, okay. And then there’s this whole thing on the back of the letter, “If you wish to appeal” and blah, blah, blah. But who has the time and money to do that? I don’t get home until 5:00 or 6:00.

Ironically, although she called her caseworker out of concern for her daughter’s uninsured status, Molly ended up being the casualty. Shortly after losing her insurance (and along with it, her ability to obtain free birth control), she had to have emergency surgery. She had been racked with pain for two weeks but did not go to the doctor because she couldn’t afford it. She suffered instead, hoping, praying, and believing, that the pain would go away as quickly as it had come. After watching her suffer, her boyfriend forced her to go to the hospital, where she was taken immediately into surgery because of a hemorrhaging tubal pregnancy. Twelve hours later she was one fallopian tube and $14,000 lighter. “I’d never gone through a hospital that fast before,” Molly told us. “I had to spend the night and stuff, and then the doctor came in and I got out probably around 11:00 the next morning. I was just like ‘I don’t have insurance, I need to get out of here.’ They charged me $900 for my room, and I was only in there from 1:00 until 10:00 in the morning.” This surgery was a wake-up call for Molly about health insurance. During the first interview, she was very naïve about the health care system. However, by the following year she had acquired expertise on health care, medical billing, and hospital costs beyond that of the average person. Managing and paying her debt added tremendous stress in her life, and pulled her back down into

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poverty just as she was developing a brighter financial future for herself and her daughter. And there’s all these doctors’ offices that, you know, I owe money to, and all this stuff and I had to set up payment plans with all of them. But, you know, it’s like paying as much as rent every month as I am to each different doctor’s offices. I’m never going to come up with the money . . . I mean, I can try to make my payments, but I know that’s never going to happen. I make eleven bucks an hour. I have to pay rent, gas, utilities, groceries, diapers, and, you know, daycare is way expensive. That’s like 400 bucks a month and now they want me to pay 400 bucks a month to different offices. And I’m like, “Dude, I am not made of money.”

It only takes one unexpected illness or accident to send a family spiraling into the physical and emotional chaos of poverty. As Molly struggles to recover from exorbitant doctor bills, she told her partner, “The next time something happens like that, I’m just going to dig a grave out in the backyard. I’ll just crawl in it and wait. Fourteen grand’s not worth it.” Molly is not alone in her frustration over her medical debt, an increasingly common phenomenon that affects about 29 million nonelderly adult Americans (Seifert and Rukavina 2006). Ironically, during our conversation, Molly revealed that she was currently interviewing for a new position that would allow her to become a permanent courthouse employee. The job “suddenly” came available to her after her supervisor received word that she was seeking job opportunities in other departments. She expressed her conflicted feelings of happiness for the new position and disgust that her employers kept her as a temporary employee without health benefits for two years before mysteriously opening a new, permanent position. Had the new position existed six months earlier, she would not be facing seemingly insurmountable medical bills. As our conversation came to a close, we asked Molly if there was anything else that was important for us to know that we had not yet talked about. She asked that policymakers recognize the struggle low-income workers face to provide health insurance for themselves and their families: “I just think it would be really nice for OHP to open their eyes to people that are out there working. I mean a fifty-cent raise an hour isn’t going to pay for medical coverage.” Molly is a textbook case of someone who followed the rules. She got her GED while on TANF, took the vocational skills courses seriously, volunteered for additional classes, and diligently tried to find a job so she could get off TANF and provide for herself and her daughter. Unfortunately, the only job

Introduction

5

available to her in her small and economically depressed town was temporary and did not offer health benefits. She performed her job well, and was rewarded with a pay raise. However, the small increase did not leave her with enough money to pay rent, feed her daughter, and purchase private health insurance when she lost medical benefits. Her health and youth ultimately worked against her as she did not have the know-how necessary to obtain adequate health care services during a crisis. She cannot say with certainty that the surgery could have been prevented if she would have been able to see a doctor earlier, but she does know that it will take many years to recover from the financial and emotional toll this took on her family. Is her story unique? Unfortunately, it is not. Molly’s circumstances shed light on how others who have thoughtfully and deliberately fought to leave welfare and establish a better life are thwarted by the U.S. health care system. What happens to the millions of families who have left the security of welfare for the world of work? Most national and statewide research and evaluation projects focus primarily on the employment characteristics of TANF leavers and their economic struggles, with little attention given to health and access to health care. Yet, because health insurance allows entry into the health care system, it is a critical source of security, and of physical and mental well-being. This is particularly true for poor and low-income families who have higher than average rates of illness, but who cannot afford to purchase health insurance privately and may not qualify for or otherwise receive government programs (Chavkin, Wise, and Romero 2002; Chavkin and Wise 2002). This book demonstrates that health insurance coverage is at the core of sound welfare reform. Families leaving welfare for work are often exceedingly vulnerable. Their jobs provide few benefits yet may disqualify them for federal aid. Their pay is low, their lives are often turbulent, and they may have little contact with a TANF caseworker who could show them for which programs they remain eligible (DeParle 2004; Hays 2003; Seccombe 2007a; Seccombe and Lockwood 2003). Without health insurance, TANF leavers’ access to health care is reduced, and their health suffers (Wise et al. 2002; Wood et al. 2002). Successful welfare reform enables former recipients to remain healthy, employed, and capable of taking care of themselves and their families. In this book, we present the findings of a statewide study that looks at health, insurance, and access to health care among families leaving TANF for work. These data and the accompanying stories reveal the challenges that families face as they leave welfare for work, especially those related to maintaining access to the health care system and securing the health care that they

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and their children need. The study was conducted in Oregon, a state with a unique expanded Medicaid program called the Oregon Health Plan (OHP) that was designed to increase access for poor and low-income families. Other federal and state policymakers watch the OHP carefully, as it has been credited with significantly reducing the proportion of uninsured within the population. Nonetheless, like public programs in other states, the OHP is falling victim to budget cuts, and many vulnerable persons, including former TANF recipients, are losing coverage. Our ultimate goal is to place our data in a broader social and political context that more fully illuminates the implication of welfare reform for health and access to health care. Why was the existing welfare program reformed? What are some of the historical and persistent dilemmas about welfare that make it such an unpopular program? What are some of the political controversies surrounding welfare, and how do we decide if reforms are successful? Why is insurance so critical to health, well-being, and financial and emotional security? Why are insurance coverage and access to health care in crisis in America today? What is the link, if any, between low-income work and insurance coverage? We began this work because we noticed that people leaving TANF often spoke of health problems and their concerns about getting health care (Seccombe 2007a). In my book, So You Think I Drive a Cadillac?, which was intended to describe welfare recipients’ concerns with the welfare system, I (KS) discovered in 1996, on the eve of welfare reform, that conversations with respondents would often spontaneously revolve around health, apprehension about receiving adequate health care, and fears about paying for health insurance (Seccombe 2007a). Despite the fact that no questions were specifically asked about health in these earlier interviews, health and access to health care emerged as central concerns and justifications for women’s continued participation on welfare. In fact, when respondents were asked in 1996 to evaluate which welfare benefit was most important to them, they reported “Medicaid” more often than any other benefit, including the welfare check itself. Yet, few books or evaluation reports have paid more than cursory attention to this neglected aspect of welfare reform (Acs and Loprest 2004; Wood and Rangarajan 2003; Zedlewski 2003). Therefore, we wanted to better understand why women and men placed such importance on securing health care for their families as they left welfare for work. We listened to the health problems and health care issues that engage their families, the struggles that consume them, and their dreams and visions of the future that drive them. Our intention is to more fully assess and understand how welfare reform is affecting the health of

Introduction

7

families, and to make this information accessible to inform upcoming policy debates. It is important that we critically examine how welfare reform affects access to health care and ultimately health itself. We must treat investment in the health of our citizens like other investments, and we agree with the Institute of Medicine’s statement that health capital “gives us a stream of future returns in the form of enjoyment of life, productivity, and developmental returns” (Coleman 2003). We should not blindly accept commonly touted explanations for the way things are, but must evaluate the assumptions, values, and ideologies that are used to justify our attitudes toward welfare, our health care system, poverty, and in particular, poor women and the insecurity of low-wage work (Foucault 1980). We can do this by listening to the voices of those women and men who have direct experience with the welfare system. These families left the meager but relatively secure confines of TANF for the insecurity of low-wage work. They now face significant challenges, including the difficult task of securing a steady job with dependable hours; finding transportation to get to that job; acquiring an appropriate wardrobe for work; ensuring that their clothes are clean and in good repair; locating quality child care; and securing health insurance for themselves and their children (Edin and Lein 1997; Hays 2003; Seccombe 2007a). Public policy should not be created from a “top-down” approach, with persons who are genuinely unfamiliar with poverty making crucial decisions about what poor families need. Instead, TANF recipients and families who have left TANF have intimate and valuable experience and insights that should be used to directly inform public policy debates and decisions. Understanding how poor families interpret the circumstances surrounding welfare reform, and how they see and act on their options because of it, is crucial to any successful reform. Drawing upon a symbolic interaction perspective, we assume that people try to make sense of the world around them, and these meanings and interpretations have profound implications for their behavior (Blumer 1969; Mead 1934; White and Klein 2002). Symbolic interaction examines the subjective meaning that people impose on objects, events, and behaviors; thus, the ways in which people interpret life have real meaning. For example, how families come to see welfare and welfare reform may influence how they plan for and cope with the changes in health insurance coverage associated with leaving TANF. It may affect the type of jobs they seek, or how they use the health care system. When TANF caseworkers do not discuss health insurance in the context of securing employment, their clients may

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interpret this to mean that replacing their Medicaid health insurance should not be of great concern, thus causing families to “fall through the cracks” with potentially disastrous results. Yet, poor families know the importance of health insurance (Seccombe 2007a; Seccombe et al. 2005a). If policymakers had consulted with welfare recipients and recent welfare leavers as they were drafting welfare reform legislation, they would have learned that access to health care is crucial to the success of welfare reform, and without it, meaningful reform is ill fated. Overview of Welfare Reform

There is currently a major effort to move people off welfare in the United States. This has not always been the case. Cash assistance programs were originally designed to help protect women and their children from conditions of poverty. Aid to Dependent Children (ADC) was created in 1935 as Title IV of the Social Security Act, a critical piece of legislation produced during the New Deal when millions of families were suffering financial hardship. The goal was to provide an opportunity for single mothers to stay out of the workforce and care for their children (Gordon 1994; Mink 1995). Today, sentiment has changed. Americans expect single mothers to seek employment and hire someone else to take care of their children. Cash assistance welfare programs are accused of discouraging work incentives and motivation. Welfare recipients are often stereotyped as lazy and living vicariously off the public dole (DeParle 2004; Hancock 2004; Hays 2003; Rank 1994; Seccombe 2007a). A review of newspaper articles published in the mid-1990s, on the eve of welfare reform, revealed that many articles reported that women on welfare “don’t work,” were “teen mothers,” “overly fertile,” or “drug users,” despite data that refuted these allegations (Center on Addiction and Substance Abuse 1994; Hancock 2004; Rank 1989; Rank 1994). How representative are these views? Studies conducted over the past several decades show the persistent popularity of the individualistic perspective in the United States, which claims that people, whether rich or poor, are largely responsible for their own economic plight. Although opinions differ somewhat by sex, race, and income, generally individualism is a highly popular explanation of poverty, with many people attributing poverty to personal failings or shortcomings (NPR Online 2001; Rector 2004; Seccombe 2007a). Most Americans are relatively unsympathetic towards poverty and do not see the increasing inequality as a problem for the country. In fact, one out of five Americans think there are too few rich people (Zimmerman 2001).

Introduction

9

When asked about the major causes of poverty, poor and wealthier persons were nearly equally likely to cite a lack of motivation, a decline in moral values, and the welfare system itself. However, the poor were also more likely to cite structural factors as major causes of poverty; 62 percent of the poor cited a shortage of jobs compared to only 27 percent of those living at twice the poverty line, and 71 percent of the poor cited medical bills as a major source of poverty compared to 54 percent of the more affluent (NPR Online 2001). In light of this widespread negative sentiment, President Bill Clinton advocated reforming the welfare system, believing that the federal government should institute a comprehensive series of reforms to prevent long-term use. He stressed that the focus of welfare should be in getting people back to work, as employment “gives hope and structure and meaning to our lives” (Clinton 1997a). However, instead of advocating for programs designed to increase the human capital of welfare recipients, such as educational and job training programs that would teach the skills needed to find higher-paying and more secure employment, Clinton advocated for specific services such as child care and health care to enhance a recipient’s ability to work: “There are things that keep people on welfare. One is the tax burden of low wage work; another is the cost of child care; another is the cost of medical care . . . today you have this bizarre situation where people on welfare, if they take a job in a place which doesn’t offer health insurance, are asked to give up their children’s health care, and go to work . . . That doesn’t make any sense” (Clinton 1997a). The Republican-led Congress came to President Clinton twice with welfare reforms that he considered too punitive and inadequate to support families. However, at the time of their third attempt Clinton was up for reelection, and early on it looked like it could be a close race. Clinton feared that his Republican opponent would make the most of the fact that Clinton had twice vetoed Republican-initiated welfare reforms that came to his desk. Therefore, on August 22, 1996, President Clinton signed a bill to revamp welfare “as we know it.” The Personal Responsibility and Work Opportunity Reconciliation Act (PRWORA) (P.L. 104–193) created Temporary Assistance for Needy Families (TANF), which has altered the context in which families make decisions about work, child care, and access to a variety of benefits such as Medicaid (Coven 2003; U.S. Department of Health and Human Services 2004). This critical welfare reform legislation went into effect as federal law on July 1, 1997, and set lifetime welfare payments at a maximum of five years, with the majority of able-bodied recipients being required to work after two

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years. In other words, welfare is no longer an entitlement program available to parents who otherwise meet the financial criteria. The pressure exerted on TANF recipients to “just get a job” is keenly felt. Recipients feel that they must take any job that becomes available to them, regardless of pay or benefits. Some exemptions may be granted in cases of hardship (the definitions of which vary by state), usually up to 20 percent of the caseload. For example, seventeen states will provide an exemption to verifiable victims of domestic violence. Thirty-seven states provide an exemption to care for an ill or incapacitated person, and forty-five states allow exemptions to care for a young infant, often defined as less than twelve months of age, but eleven states require work after the child is over three months of age. Five states offer no exemptions for young children at all (Rowe and Russell 2004). Noncompliance with the work requirements may reduce the adult portion of the benefits, or terminate benefits for the entire family for six months or longer. In addition to time limits and work requirements, other changes under this reform included minimal child care assistance, the required identification of the children’s biological fathers so that child support could more easily be pursued, and the requirement that unmarried minors live at home and stay in school to receive benefits. Moreover, twenty-one states imposed family-cap policies, even though such policies were not part of the federal mandate, which limited or denied aid for additional children born to a parent receiving TANF. For example, in California if a child is born ten months after a family begins TANF, there will be no increase in the cash benefit for that child (Rowe and Russell 2004). Important to our discussion here, PRWORA also provided for one year of transitional medical benefits for families who leave welfare for work. The assumption behind this policy is that families should be able to secure their own employment-related insurance within that year. Since the passage of welfare reform, many people have left welfare, usually for low-wage work. Between 1994 and 2005, national TANF caseloads fell by 60 percent, declining from about 5 million to under 2 million families (U.S. Department of Health and Human Services 2006). One year after signing reform legislation, President Clinton hailed welfare reform a resounding success by citing statistics indicating a drop of 1.4 million in the number of welfare recipients. “I think it’s fair to say that the debate is over. We know that welfare reform works,” he announced in a speech in St. Louis (Broder 1997). More recently, the conservative think-tank, the Heritage Foundation, claimed that welfare reform “made remarkable headway in helping welfare dependents to

Introduction

11

move toward self-sufficiency. It dramatically reduced the caseload of dependents, reduced child poverty, and increased employment among single mothers” (Rector 2004). This sounds like good news. However, is this information correct? The answer is both yes and no, as things are usually more complex than they seem on the surface. Yes, caseloads have declined, and more single mothers are employed. However, while the numbers of both children and adults in poverty dropped in the late 1990s, largely due to the economic boom of the period, poverty rates among adults and children have risen substantially since 2000. The 2005 poverty thresholds average $15,577 for a family of three, and $19,971 for a family of four (DeNavas-Walt, Proctor, and Lee 2006). In 2005, nearly 11 percent of people in families lived in poverty, including a shocking 31 percent of people in female-headed families without a husband present. Nearly 18 percent of children—or almost one in five—lived below the poverty line. Of these children, 8 percent lived in extreme poverty, defined as one-half of the poverty level. Their families lack the money to provide for even the most basic facets of life: adequate food, shelter, and clothing. Now, years after TANF was created, there is a burgeoning amount of research that shows us what has happened to families in the aftermath of welfare reform. First, poverty rates among families that leave TANF remain very high. Many studies report that between 50 and 75 percent of families remain poor even two to three years after leaving welfare (Blank 2002). Moreover, even those families with incomes above poverty have very low incomes. About 90 percent of TANF leavers in one state study lived below 185 percent of poverty—many people are therefore not counted in official statistics, but they continue to live on the margins of society (Acs and Loprest 2004). Second, families that left welfare recently are more vulnerable than early TANF leavers. They are less likely to be employed, and are less likely to have another stable source of support. For example, a report by the Urban Institute, a nonpartisan research organization, shows that the percentage of families that leave welfare and are not employed rose from 50 percent in 2000 to 58 percent in 2002. This study found a marked increase in the number of families that are “disconnected”—they are not working, do not have a working spouse, and are not receiving TANF or Supplemental Security Income (SSI), rising from nearly 10 percent in 1999 to 14 percent in 2002 (Loprest 2003). These families face significant health, education, language, or other barriers to employment and suffer from hunger. They report that they are “barely making it from day to day” (Wood and Rangarajan 2003; Zedlewski 2003).

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Third, many very poor and needy families do not receive TANF, and their numbers are increasing. Data indicate that about 45 to 50 percent of families eligible for TANF do not receive assistance, up from only about 20 percent in 1996 (Fremstad 2004; Fremstad 2003). Many families are diverted from TANF when they go to apply for aid. Studies have found that those persons diverted from TANF were more likely to be black, were more likely to speak Spanish as their primary language, and were more likely to be disabled or have other health problems (Fremstad 2004). Overlooked in the discussion is the fact that when these families leave welfare for work, they often lose health insurance—a critical part of their welfare benefit. Not surprisingly, the recent drop in TANF caseloads has been accompanied by declines in funding for Medicaid programs. In 2002, forty-nine states and the District of Columbia took Medicaid cost-containment actions for FY 2003 (Singh and Peacock 2003). In twenty-seven of these states, the cost-containment actions included reducing or restricting Medicaid eligibility. These strategies are the result of the fiscal crises faced by most states for the past several years, and although there may be recent signs of improvement, revenues have not returned to levels reported prior to 2001 and states must now contend with a backlog of expenditures (Burton et al. 2006). State Medicaid expenditures have often exceeded their budgets and in fiscal year 2005, twentysix states experienced Medicaid shortfalls (National Governors Association and National Association of State Budget Officers 2005). Declines in Medicaid funding would be of little concern if we could assume that previous TANF recipients receive health insurance benefits from their new employers. At this point in history, most Americans believe that the “right” way to get health insurance is from an employer—this is “playing by the rules” (Seccombe and Amey 1995). However, only 41 percent of workers earning less than $10.00 an hour have access to employer-sponsored insurance (Collins et al. 2004). Moreover, a recent review of 15 state or regional studies that evaluate the employment and well-being of families that left welfare reveals that the median wages paid to welfare leavers ranged between $6.50 and $9.00, with a mean ranging between $7.50 and $8.74 (Acs and Loprest 2004). While this amount hovers around or above the federal and state minimum wages, it is hardly a living wage able to support a family in dignity. Despite these meager wages, individuals and families often find themselves on the “wrong” side of the income threshold for various aid programs. They earn too much to qualify for government-funded programs, but are certainly unable to purchase health insurance themselves. Indeed, families

Introduction

13

leaving welfare are struggling to cover their basic needs. In their synthesis of studies in fifteen states or regions, Acs and Loprest found that about a third or more of welfare leavers experienced food insecurity after leaving TANF and 20 percent received emergency food services. Additionally, between onequarter and one-half of families had fallen behind on rent or housing costs and had problems paying utility bills or had their utilities cut off because of failure to pay (Acs and Loprest 2004). They are the new “working poor” who face myriad economic and social challenges in the quest for self-sufficiency (Seccombe, Newsom, and Hoffman, 2006). Do Former Recipients Have Insurance? Transitional Medicaid and Beyond

The 1996 welfare reform bill allows for twelve months of transitional Medicaid assistance for families who leave welfare for work and who would otherwise lose eligibility because of their earnings. States and several national agencies have elected to track former recipients for a brief period of time to determine how families fare after leaving TANF (Centers for Disease Control 2001; Acs and Loprest 2004; Acs and Loprest 2003; Loprest 2001). These studies indicate that a critical number of former TANF recipients are without health insurance from any source. They commonly find that one-quarter to one-half of former TANF recipients and 15 to 30 percent of their children are completely uninsured. For example, drawing upon data from the National Survey of American Families (NSAF), Loprest analyzed how a sample of over 1,200 individuals leaving TANF between 1995 and 1997 have fared (Loprest 1999). She discovered that 41 percent of former TANF recipients and 25 percent of their children had no health insurance. One-third of adults and nearly half of their children continued to receive Medicaid. Welfare-to-work training programs are touted as successfully helping recipients find employment, but they have the unintended consequence of reducing access to health insurance. With the focus on employment at all costs, there is little attention paid to the so-called fringe benefits of the employment. Yet, health insurance is an important part of remuneration and should not be trivialized as fringe. Nonetheless, in focus groups with welfare-to-work participants, it was revealed that TANF caseworkers seldom or never bring up the importance of health insurance during the job search process. Instead, participants were encouraged to get a job—any job—regardless of whether benefits were provided (Seccombe and Lockwood 2003). It appears that welfare-to-work programs may be successful in raising employment rates, but they do little to ensure the health insurance coverage of their participants.

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Just Don’t Get Sick

The Importance of Health Insurance

Why is health insurance of such grave concern? First, poor people in general, and welfare recipients in particular, have poorer health than others (Corcoran, Danziger, and Tolman 2003; Levin-Epstein 2003; Dey and Bloom 2005; Schiller, Adams, and Coriaty Nelson 2005; Wood et al. 2002). For example, nearly one-third of participants in the Manpower Demonstration Research Corporation’s Urban Change Project had low physical well-being scores, compared to one-tenth of adults nationally (London, Martinez, and Polit 2001). Another study using data from the National Health Interview Survey (NHIS) reports that about one in four children enrolled in TANF had some form of chronic illness (Wise et al. 2002). Importantly, poor health is cited as one of the top reasons why welfare leavers have difficulty finding or maintaining employment (Acs and Loprest 2004). It is no surprise that the American Journal of Public Health voiced its opinion on this subject by publishing an editorial entitled, “The Data Are In: Health Matters in Welfare Policy” (Chavkin and Wise 2002). Second, the lack of health insurance is a serious social problem in the United States because it is one of the primary mechanisms of accessing health care services. According to data from the U.S. Census Bureau, nearly 47 million people—or 16 percent of the population—do not have health insurance (DeNavas-Walt, Proctor, and Lee 2006) and millions more are uninsured for at least part of the year (Cohen and Ni 2004). Despite programs like the State Children’s Health Insurance Program (SCHIP), about 11 percent of children under age eighteen are without insurance. Having health insurance can make a tremendous difference in the amount and type of health care that people receive (Angel, Lein, and Henrici 2006; Sered and Fernandopulle 2005). Without insurance, both adults and children use the health care system less often, are less likely to have a regular source of health care, rely more often on emergency rooms for their treatment, and often experience unnecessary pain, suffering, and even death. The uninsured are twice as likely to postpone seeking medical care, over four times as likely to forgo needed medical care, and are more than twice as likely to have a needed prescription go unfilled (Kaiser Commission on Medicaid and the Uninsured 2003). Uninsured adults and children are more likely to suffer a wide variety of chronic and acute ailments compared to the insured (Baker et al. 2001; Baker et al. 2002; Feinberg et al. 2002; Sered and Fernandopulle 2005). In an extensive review of research published over the last twenty-five years, it is estimated that

Introduction

15

having health insurance could reduce the mortality rate of the uninsured by at least 4 percent, and possibly by 25 percent (Hadley 2003). Third, having health insurance is also critical to overall financial wellbeing. Those without it not only forgo or postpone care, but when they must seek treatment, they struggle to pay for the services. One health disaster—a broken leg, a ruptured appendix, an injured back, or, in Molly’s case, a tubal pregnancy, can sink a family into deep poverty from which they may never recover. States vary in the size of their uninsured population, largely due to differences in state economies, the size of the low-income population, the scope of state Medicaid programs, and the likelihood of employers providing coverage. To accommodate some of these variations, many states have created programs to extend health insurance coverage to low-income or medically needy persons through Medicaid or through a special health care financing program. One of the most innovative and best known of these programs is found in Oregon. Oregon and the Oregon Health Plan

Perhaps a window into the creative culture and political attitudes that hatched the Oregon Health Plan (OHP) can be found in the state motto: “She Flies with Her Own Wings.” Home to vibrant metropolitan areas such as Portland, Eugene, and Salem, Oregon is also known for natural beauty found in its beaches, forests, deserts, and mountains. With an estimated population of over three and a half million residents, its population is growing and increasingly ethnically diverse. Although 87 percent white, about 60 percent of new residents between 2000 and 2004 were ethnic or racial minorities, most of whom are of Hispanic or Asian descent. Asian growth is located mostly in the metropolitan areas while Hispanic population growth is found across the state, often in the agricultural communities of eastern Oregon. Oregon produces a host of agricultural products, including cattle, dairy, apples and other fruits. It is also one of the world’s four major hazelnut growing regions, and produces 95 percent of the domestic hazelnuts in the United States. Vast forests have historically made Oregon one of the nation’s major timber producers, though this industry has declined substantially in the last few decades, producing hardships in many communities. Likewise, the historical pillar of fishing has been severely battered in recent decades, contributing to high unemployment rates statewide, but particularly within rural areas. In recent years Oregon has had one of the highest unemployment rates in the nation. Oregonians celebrate a history filled with courageous pioneers and they take pride in their progressive popular image. The state has been described as

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Just Don’t Get Sick

having a “moralistic” political subculture, in which “both the general public and politicians conceive of politics as a public activity centered on some notion of the public good and properly devoted to the advancement of the public interest” (Fox and Leichter 1991a). It is perhaps this spirit that led to the conditions necessary for passage of an innovative, yet controversial health policy. Begun in the late 1980s, several critical pieces of legislation were passed in the Oregon state legislature collectively known as the Oregon Health Plan (OHP). This program was designed to increase access to health care among poor and low-income persons. The plan contained three primary components, the first of which extended Medicaid eligibility to all state residents with incomes below the federal poverty level. Persons could qualify for OHP up to nearly 200 percent of the poverty line if they fell in a particular category, e.g., low-income pregnant women or children meeting certain criteria. Second, it established a High Risk Insurance Pool for people who were refused health coverage by private insurers because of preexisting medical conditions. Finally, it gave small businesses a broader range of insurance options, and provided employees with an improved chance of retaining their insurance when changing jobs. For those who would not otherwise be covered by Medicaid without the expansion of the OHP, small monthly premiums were instituted on a sliding scale. The OHP was not without controversy, however, as the state planned to pay for this expansion by reducing the Medicaid benefit package—more people would be covered, but fewer services would be offered. This decision provoked strong criticism publicly and politically. In a letter to the editor of the thenstatewide newspaper, The Journal, an Oregon physician wrote, “The Oregon plan will target a new group for discrimination—the seriously ill” (Bennett 1992). At the heart of the controversy was the method the state chose to create the benefit package. After ranking more than seven hundred diagnoses and treatments according to the probability of death or disability with and without treatment, the legislature made the difficult decision to draw a line at item 587. Services at or above the line would be covered, but those below would not. The prioritized list, also known as “rationing,” was defended by physician and state senator John Kitzhaber, architect of the OHP: “If we can agree that society cannot afford to buy everything [in health services] for everyone who might conceivably benefit from it, then we have to develop a process to determine what level of care everyone should have access to” (Fox and Leichter 1991b). Rationing, especially for the poor, proved unpopular in many circles and the Children’s Defense Fund, the American Academy of Pediatrics, many liberal Democrats in Congress, and others denounced the plan (Bodenheimer 1997).

Introduction

17

Tennessee senator Al Gore weighed in on the issue, stating, “Oregon’s decision to ration health care to its poorest women and children is a declaration of unconditional surrender just as the first battles are being fought over the future of our health care system” (Gore Jr. 1990). Nonetheless, in March 1993, OHP was approved by the Clinton administration and on February 1, 1994, it went into operation. With its prioritized list, Oregon began insuring more people, not fewer, while other states eliminated thousands of families from Medicaid and reduced benefits with little scrutiny. In 1992 about 18 percent of Oregonians were without health insurance, but by the late 1990s, that figure was reduced to 12 percent. It is estimated that more than 8,000 families on the OHP who would likely have qualified for cash welfare did not enroll, thereby saving Oregon an estimated $38 million (Oregon Office for Health Policy and Research 1999). Moreover, the program saved the state money in other ways. Hospital charity work declined by 30 percent and emergency room use declined 10 percent. Despite the widespread gains made by the implementation of the OHP, a sizable portion of Oregon citizens remained uninsured, particularly residents in rural areas and racial/ethnic minorities, including children. Over time, unemployment has risen, the economy has declined, and the budget for OHP has not kept pace with need or inflation, resulting in declining enrollments. By 2002, 14 percent of Oregonians were uninsured, increasing to 17 percent by 2004, nearly the same level as prior to the implementation of OHP. Oregonians with incomes under the federal poverty line are six times more likely to be uninsured than those with incomes over 500 percent of the federal poverty line (Office for Oregon Health Policy and Research—Policy and Analysis Unit 2005). Although children are more likely than adults to have insurance coverage, significant numbers of Oregonians, both adults and children, remain vulnerable, and the problem is intensifying as OHP is eroded. The Study: Access to Health Care and Welfare Reform

What happens to families leaving TANF for work? In theory, former recipients should be eligible for OHP/Medicaid if they work at low-income jobs that do not provide insurance as a fringe benefit. Is this the case? Are families who leave TANF insured, and are they able to get the health care they need? The research described in this book draws upon both statistical data and in-depth interviews to address these issues. Our goals include (1) an assessment of the ways in which welfare reform has affected the health and well-being of TANF leavers, including the access and barriers they face in securing health care and

18

Just Don’t Get Sick

the ways in which they utilize the health care system; and (2) an appraisal of the ways in which families leaving TANF for employment plan for and cope with the expiration of their one-year transitional Medicaid/OHP coverage. The answers to these questions come from 552 persons who recently left TANF for work in Oregon and who completed two telephone interviews over the course of a year, the first in 2002, and the second one year later. The interviews, conducted in English and Spanish, covered a wide range of issues about insurance coverage, health, children and their health, and access and use of health care services. Respondents were initially contacted six to seven months after leaving TANF, and then reinterviewed one year later. Eighty-three of these respondents also participated in two extensive in-person interviews after the telephone surveys, usually conducted in their own home. At the time of the first telephone survey and interview, virtually all respondents were still eligible for transitional Medicaid benefits. By the time of the second round, transitional benefits had expired. The focus of our study is to explain what happened to these families. Who Are the Participants?

How did we find so many Oregonians to participate in our study? And how representative are these persons of all the women and men who left TANF for work during this period? Contact information was obtained from the Oregon Department of Human Services (DHS) for all adult Oregonians who had stopped receiving TANF about six to seven months prior to our study. With multiple attempts, we were successful in reaching about half of those individuals. Telephone screening established that about one-third of those we contacted met our study criteria of leaving TANF for employment (and remaining off TANF during this period) rather than leaving TANF for some other reason such as marriage, or children turning age eighteen. Of the individuals we reached who were eligible for our study, 637 persons, or roughly two-thirds, agreed to participate. One year later, interviews were again conducted with 87 percent of the original sample, resulting in complete data on 552 families. The remaining 13 percent had either moved out of state, could not be found, refused to participate, or were deceased. Comparing the respondents in our sample with the full list of families leaving TANF in Oregon during this period indicates that there were no significant differences in the sex, race, or native language between the two groups; however, the respondents in our sample were, on average, about eighteen months older than the full list of TANF leavers provided by DHS. Thus, we have confidence

Introduction

19

that our respondents reasonably resemble others in Oregon who left TANF for work during this period but were unavailable or refused to participate. Unfortunately, the lack of nationwide data makes it impossible to compare our respondents to TANF leavers throughout the United States. However, statewide studies reveal that the characteristics of TANF leavers generally reflect demographic features of the state as a whole, and of the poor within that state. For example, Alabama is likely to have more African American TANF leavers than does Nebraska because there are more African Americans, and more poor African Americans, living in that state. A study that pooled data from several states (and several regions within states) indicated that, in comparison, our respondents in Oregon were more likely to be white, more likely to have at least a high school diploma, more likely to have been married or divorced (as opposed to never married) and they were more likely to have only one child, again reflecting the sociodemographic characteristics of Oregon, and Oregon’s poor (Miller 2002). Thus, although no statewide data can truly provide a representative sample of TANF leavers across America, the data can reveal critical trends, raise important issues, and suggest possible solutions to the general problems that TANF leavers face. The sociodemographic characteristics of our sample are shown in table 1.1. The mean age of the sample was thirty years, and almost a third were under age twenty-five. As expected, nine out of ten respondents were female. Nearly three-quarters were white, and Hispanics represented the largest minority group, reflecting the demography of Oregon. Nearly 11 percent of our sample spoke Spanish as their primary language. Over three-quarters of our sample had at least a high school diploma or GED, and nearly 10 percent had at least an Associate’s Degree. Over three-quarters of the sample had only one or two children, and very few had five or more children. Most respondents lived in the urban regions of Oregon, including the three-county Portland metropolitan area, and population centers along the Interstate I-5 corridor, including Eugene, Salem, and Medford. Although leaving welfare for work six to seven months prior, by the time of the first telephone survey only 78 percent of respondents were employed, decreasing to 63 percent one year later. The annual household income increased by over $2,000 during the year, although respondents’ average monthly take-home pay did not change significantly. Slightly more respondents were married at the second interview, which could account for the higher household incomes. To further investigate the circumstances that these families faced as they left welfare, we conducted in-person detailed qualitative interviews to explore

Table 1.1

Characteristics of Study Sample (percentages) Wave 1

Wave 2

18–24

30.1

—

25–34

40.4

—

35–44

22.5

—

45–64

6.9

—

65+

0.2

—

Mean

30.4

—

Female

90.6

90.2

9.4

9.8

71.9

72.8

5.2

5.5

Age

Sex Male Race White African American

15.2

16.6

Asian

Hispanic

1.0

1.1

Native American

2.1

2.0

Other

4.6

2.0

English

88.5

89.3

Spanish

11.5

10.7

Less than high school graduate

20.0

22.2

High school graduate/General Educational Development Certificate

42.2

38.2

Some college

Language

Highest level of education completed

30.7

30.2

Associate’s degree

4.9

8.0

Bachelor’s degree or above

2.2

1.5

Number of children 0

2.0

4.9

1

42.2

37.3

2

32.4

29.0

3

15.9

20.1

4

4.9

5.3

5 or more

2.5

3.5

Mean

1.9

2.0* (continued)

Introduction

21

Table 1.1 (continued)

Urban Rural Currently employed Annual household income (Mean) If employed, average monthly take-home pay (N=273) (Mean)

Wave 1

Wave 2

90.2

90.0

9.8

10.0

78.4

63.0*

$12,100

$14,596*

$1,009

$1,049

Marital status Married Cohabiting Never married

19.1

24.9

5.5

5.5

38.9

35.3

Widowed

1.3

0.9

Divorced

24.2

24.9

Other

11.1

8.5

*p < .05.

the stories and life experiences they had to offer. Participants in these interviews were drawn from those individuals who had completed the telephone surveys and who resided in one of four key regions in Oregon. The four regions were selected with an eye to maximizing contrast and each presents a distinctive employment context: the three-county Portland metropolitan area, which is the economic engine of the state; a two-county rural timber and coastal region facing declines in the timber industry resulting in high unemployment and poverty rates; a two-county central Oregon region experiencing a boom in tourism, with the relatively low-paying seasonal jobs that accompany tourism resulting in higher than average seasonal unemployment and poverty rates; and a twocounty eastern region with a largely agricultural economy, with seasonal and often migrant labor, also resulting in higher than average rates of poverty. Initially, ninety personal interviews were conducted, averaging nearly an hour. They focused on a wide array of issues surrounding health and access to health care. One year later, we successfully found and reinterviewed eightythree of the original sample, which allowed us to follow up on their initial stories and to assess how their circumstances had changed after the year of transitional medical benefits had expired. Further details about the samples or survey and interview procedures can be found in the Appendix.

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Just Don’t Get Sick

Together, these telephone surveys and in-person interviews provide tremendous insight into how welfare reform has affected families’ ability to access the system, and how they negotiate the changes before them. These issues are of national concern because of the growing number of families who have left welfare for work and who have lost or will soon lose their single year of transitional Medicaid benefits. Therefore, we ask how families fare in securing access to health care after leaving TANF, and seek to understand the factors that promote access or serve as barriers. The story of one of our respondents, whom we will call “Bob,” typifies many of the families we learned about. He and his family live in a small town, hundreds of miles from any metropolitan area. Eastern Oregon is known for its harsh winters and blistering summers, and this particular small community seemed to bear witness to the significant toll weather can take on a neighborhood struggling to maintain itself. Driving through the small town, many streets were littered with abandoned cars, piles of garbage and remnants of old appliances. Bob’s house is typical of those in his community—small, dilapidated, weather beaten. The region had been experiencing a typical winter, which meant lows in the teens and wind chills much lower than that. Although the sun was shining brightly, the air was chilling, and recent storms had left large snow banks along the sides of the streets. As we approached Bob’s front door, anxious to get out of the cold, nothing could have prepared us for the severe chill inside the house; the air inside even seemed to smell cold. Nonetheless, this thirty-threeyear-old father of three greeted us with a warm smile, and made every effort to make us feel at home. Bob guided us through the small and sparsely furnished living room with its threadbare blue carpet. We sat together at his dining room table about ten feet away from what appeared to be the only heat source in the house: a cross between a small wood stove and an old “trash burner.” Though in many ways he looked like a typical thirty-something with brown eyes and black hair, the lack of color in his face and rough hands provided a window into his physical suffering. The smallness of his frame was quite striking given the enormity of life challenges he faced. His body seemed to carry the heavy burden of being unable to take care of his family in the way he would like. Although he received much social support from his church, he wore an attitude of patient suffering as he put the physical, emotional, and spiritual pieces of his life back together. Most families who receive TANF are comprised of single mothers who raise their children with minimal or no support from their children’s fathers. However, Bob is part of a married-couple household who received TANF in the

Introduction

23

past for the care of their young biological children and foster children. He has diabetes, is disabled, and receives SSI for his disability, though he works part time when he can in order to “feel like a man.” Bob, his wife, and their children typify families who fall in between the gaps of a complicated maze of insurance programs. At the time of the first interview, OHP/Medicaid covered Bob who was on unpaid sick leave, and his family. His health care needs were largely taken care of. When we met again one year later, both Bob and his wife were employed, and technically both had insurance from their jobs. One plan served as the primary insurer, the other as the secondary insurer. They no longer qualified for OHP/Medicaid, and therefore they were dropped from the rolls. Despite this seemingly good news, the insurance plans from their employment were woefully inadequate, and left Bob and his family exceedingly vulnerable. One policy carried a $3,000 deductible, with a maximum payout of only $3,500 per year. It was difficult to meet his deductible given his family’s low income; however, the real threat was that, given Bob’s serious and costly health conditions, his medical costs far exceeded the maximum the policy would pay. Therefore, Bob had been relying on the second insurance plan through his wife, Carla’s employer. When we met, however, that plan had been suspended due to Carla’s (unpaid) maternity leave after the recent birth of their child. Despite not receiving an income, Carla was required to continue paying her premium in full, and the family has been unable to pay its cost. As a result, all medical expenses must be paid for out of pocket. Bob explained, “She’s been on maternity leave for nine weeks now. We’ve had no income. So what happened is that she hasn’t been at work, the $48 a month hasn’t been deducted, so we’ve been cut off. We’ve got really bad insurance problems right now. . . . My newborn is covered for a year, but my two-year-old and our three-year-old are not covered.” While attempting to secure the health care they need, the family struggles monthly to make ends meet, and the financial costs to this family have taken their toll. Bob told us how he and his wife have had to make some very difficult choices, “OHP paid for this month, but we weren’t at work and we didn’t use the money for what we were supposed to use it for . . . we used it for daycare. We’ve sort of had to rob Peter to pay Paul because we’ve both been out of work for so long.” What are the consequences of being poor, and for all practical purposes, having no insurance? Bob and his family must forgo needed medical care. Making choices between basic necessities has been especially heartbreaking for him when his children are the ones affected. Bob describes his dilemmas and explains how these decisions have affected his ability to provide for his family’s

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Just Don’t Get Sick

health needs: “I have always had insurance problems, and it’s at the pharmacy where it’s at. It’s so frustrating to go somewhere to get your meds and they’re saying no, you have to pay $100, $200, or $300 for what you used to get for three dollars. You’re going, ‘Sorry, I can’t take it’ and you walk away. It’s frustrating, especially when it is for your kids. Just last week they prescribed some steroids for their lungs, but we couldn’t get the medication.” When we interviewed Bob the second time, his own health was in a particularly precarious position. He explained how he had been forced to steal his diabetic supplies such as syringes and test strips when he did not have insurance or the ability to pay out of pocket. However, since that time he had undergone a dramatic personal change, and his newfound ethic could not allow him to justify theft for any reason. Therefore, he was forced to ration what remained of his diabetes medications. Bob explained how he maintained his physical health as best as he possibly could: I haven’t been able to meet those expenses, so I’m suffering. I’ve had to go on a fourth of the medications I usually take to make sure they last until her insurance picks back up. The medications I’m on are expensive. Thank God I have been able to get samples. I’ve been able to continue that, but I haven’t been able to get my samples of the Neurontin, so I’m down to, instead of four pills I’m down to one pill. . . . I only have one more day’s worth of medication. But the most important is my insulin pump. I’m getting infections from the sites because I’m keeping them on five times longer than I’m supposed to. I haven’t received an order since April, and I refuse to go back on the injections of the long-acting insulin because that’s what puts me in the hospital with seizures. I’ve been taking fifteen to twenty shots a day to try to mimic this pump. Nothing has gone through with this company insurance-wise. My blood sugars are suffering a lot. I just had a hemoglobin test, and it’s four times higher than it should be. . . . It’s supposed to be three and it’s at 10.7, which is killing my heart, my liver, my kidneys, my eyes, my circulation. I’ve had two surgeries on my feet since last year, too. High blood sugars affect your circulation. There’s a loss of sensation, tingling, pain, lots of pain.

Bob acknowledges that by forgoing timely needed care, his health problems end up costing even more in the long run. He was especially concerned about how his own shortened life expectancy might affect his family: “I have no control. Say I don’t eat at the right time, boom, I go into low blood sugar reaction and I end up in the hospital. It happened to me three or four times a month

Introduction

25

before I went on the pump. That’s why OHP paid the $6,000 for this pump because it was cheaper to keep me out of the hospital. Diabetes is terminal if it’s untreated when insurance, policies, budget cuts, every little thing affects it. They need to say, ‘He’s here, he doesn’t have cancer, but it is terminal if it’s not treated.’” How does Bob cope? He acknowledges that he would have been better off if he had been able to stay on OHP/Medicaid, but the family was no longer eligible because of his wife’s employment. He feels a deep sense of guilt that he is not self-sufficient and that his family has needed public assistance. His traditional beliefs about heading his household and being a “breadwinner” are fueled by the strong cultural mandate of employment that inspired welfare reform. He notes that he and his wife have been hardworking taxpayers. If I would have known the problems I would have had getting on that primary [insurance policy], I would have never done it, never. I would have remained on OHP and I would probably be healthy right now. I’d probably have a whole box full of equipment to use. But I’m a taxpayer too. My wife is a taxpayer. I felt this guilt; I’m not quite self-sufficient. Our will is to get off public assistance altogether, because our will is to be self-sufficient as much as we can. . . . I know I could be if we did this or tried this . . . I have a lot of faith in the Lord and He has been a big issue in our lives. He has been giving me the strength to make it through this.

Bob and Molly reveal some important lessons in the way that poor health can lead to stress, impoverishment, and a radically diminished quality of life. Although they have always lived somewhat on the financial margins, their situation reminds us that even many working and middle-class families are only one health crisis away from losing their jobs, their income, and their assets. Illness or injury can strike any of us at any time. Nevertheless, insurance coverage is increasingly inadequate to meet a family’s true needs, and many families must postpone or do without needed health care. Additionally, a preexisting condition or disability may make it impossible to obtain insurance from an employer. Given the fragmentation of our health care system, should we be surprised that families like Bob’s and Molly’s fall through the cracks? Conclusion and Organization

The data presented here, along with the rich stories told by our respondents, reveal that health insurance coverage is at the core of sound welfare reform. One cannot speak of welfare success until we have tackled the issue of how to

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Just Don’t Get Sick

improve the security of families by ensuring that they have the ability to access needed health care services. The power of our approach focuses on the health problems of both adults and children and how health has changed in the year between interviews. At the first interviews conducted between June and December of 2002, most families were in the midst of receiving one year of transitional medical benefits. One year later transitional OHP/Medicaid benefits had expired, although some respondents continued to qualify for medical benefits because of their income. What has been the implication of welfare reform for their health? Health insurance is the primary means by which most Americans are able to access the health care system, but families leaving TANF face many challenges in maintaining health insurance. We next look at how leaving TANF for work affects the extent and source of respondents’ health insurance coverage, and how these have changed over the course of the year after transitional benefits expire. We discuss the American tradition of employer-sponsored insurance, but reveal why this system fails for so many. We also examine how residents in rural areas and racial and ethnic minorities fare, as they may have more limited opportunities for employer-sponsored insurance. Being without health insurance represents a critical barrier to securing access to health care, but there are other significant obstacles as well. We then investigate other roadblocks that families leaving TANF for work may experience in trying to secure health care, including going without a usual source of care; the stigma associated with OHP/Medicaid; long distances to providers and a lack of reliable transportation; mounting bills and debt; challenges in the home such as not having a telephone or a lack of child care; perceived cultural insensitivity of providers; language differences; and employment constraints, such as a lack of paid sick leave. We then explore how respondents and their children used the health care system and how their use may have changed over the course of the year after their automatic OHP/Medicaid expired. The surveys and interviews also reveal the degree to which respondents and their children have delayed or gone without needed care and the consequences of doing so. Do families who leave welfare for work worry about the possibility of losing their health insurance benefits? Are they knowledgeable about eligibility rules, and plan for the time when medical benefits may not be available? In what ways do they cope with the expiration of automatic benefits? We assess the degree of worry respondents report with regard to accessing health; identify gaps in their knowledge about OHP/Medicaid coverage, rules, and eligibility;

Introduction

27

outline their approaches to planning for health insurance coverage after the expiration of transitional OHP/Medicaid coverage; and describe how families cope generally with concerns about accessing health care. Health insurance coverage is at the core of sound welfare reform because the ability to obtain health care is fundamental to the security, stability, and well-being of poor families. Welfare reform can never be a resounding success when families work at jobs that fail to provide employer-sponsored insurance, and avenues for government-sponsored insurance are closed to them. The last chapter summarizes policy recommendations that highlight what can be done to better ensure the health and well-being of the families leaving welfare for work. If welfare policies have any chance of success, fundamental human needs such as the provision of health insurance must be addressed.

Chapter 2

Health Status and Health Changes

When conducting a research study, it is common for some participants to stand out as particularly dedicated to the project—faithfully returning phone calls and letters, informing the project staff when they move, and willing to be open about subjects that may be sensitive or painful. Sarah is one of those people. We learned a great deal from the two telephone and two in-person interviews we had with Sarah, and her story illustrates the struggles that some women face getting health care for a sick child after leaving TANF. Sarah is a thirty-two-year-old woman living in the Portland, Oregon, metropolitan area. Our first meeting was at her parents’ home in a gentrifying neighborhood known for its mixture of “yuppies” and longer-term, workingclass inhabitants. Sarah met us outside, and her large, stocky frame and proud, confident demeanor immediately conveyed that she was an individual to be reckoned with. Sarah directed us to a low, unpainted bench on the front porch, where we were blissfully protected from the July sun. We then began to get acquainted with this extraordinary woman’s life. Sarah was living in the basement of her parents’ home to save expenses and to have occasional babysitting assistance for her eight-year-old son, Jake. Before we undertook the “business” of the interview, it was clearly important to Sarah that we meet Jake and have an understanding of his situation. Sarah carefully and lovingly presented her son, who was lying on a blanket on the floor of his grandparents’ cramped living room. Due to the heat he wore nothing but a diaper. Jake’s pale white skin looked as though he had never been exposed to sunlight and he was surrounded by toys of all description. Though

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he is the size of a normal child his age, Jake is in all other respects an infant due to a severe case of cerebral palsy and developmental delays that were likely caused by complications during pregnancy. Sarah had placenta previa, where the placenta tears from the uterus, so Jake was without proper oxygen and food when she was about six months pregnant. Sarah cares for her son’s significant medical needs by herself, in conjunction with his school. Jake’s father is not a part of his life. Sarah described her pregnancy and the birth of her son: We did an ultrasound the week before he was born, and the most they could see was that he was small in size and not a lot of amniotic fluid around him. If a child doesn’t have a lot of nourishment coming, they have a tendency to use their bladder because, even though it’s waste, you can reuse that. The amniotic fluid is the baby’s waste, so he was trying to hold onto that to try and reuse it, and that’s a sure sign of lack of food and lack of oxygen too. A week later we went in for another ultrasound and they could see the placenta was tearing, and so I had a cesarean done and they lost his heartbeat. So when he was born, he was basically not breathing. He was clinically dead for three minutes. They revived him because they figured he had potential. So the cerebral palsy came from when I was pregnant, and the rest of it kicked in because of the lack of oxygen when he was born. That’s where the seizures started because his brain would hemorrhage.

Sarah went on to describe what life had been like for her since Jake’s birth. Because he is so deeply dependent on Sarah, all of her personal needs, desires, and aspirations take a back seat to his daily survival. Eight years later, what is her son Jake like? He’s eight years old. He doesn’t talk. He makes sounds, more or less to indicate what he needs. . . . He’s in a wheelchair because he doesn’t walk. So it’s basically like having a three-month-old child that cries whenever it needs anything, and as a mom you do the same thing any mother would. You go down a little checklist: you’ve just eaten, you’ve had your diaper changed, so it’s a matter of a guessing game of what he needs or wants. Sometimes you can see the frustration in his eyes because he can’t communicate what he wants. His favorite sound is “uh” which sometimes means he wants a drink of water. But “uh” also means he can’t reach his toy, “uh” means you’re watching TV and not feeding me. . . . My child is eight years old and the plain fact is, he’s

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eight years old, and he can’t do anything for himself, except play with his toys and his newspaper. He can’t verbally communicate with me. He basically can’t do anything for himself. If I set him here on the floor, he stays in this vicinity, he falls over to his side, he rolls on his tummy, he turns himself around a little but, but he’s subject to this part of the house because that’s where I put him. Other than crying, I could leave him here all day long if I so desired and that would just have to work; there’s nothing he could do about it. Not that I would, and let me tell you, that boy’s got a great set of lungs.

At the first interview, OHP/Medicaid met Sarah’s health insurance needs. One year later, Sarah revealed that she was uninsured. She does not receive insurance from her employer, even though it is offered for $160 a month, a price she feels is reasonable despite her near poverty-level budget. Purchasing employer-sponsored insurance would put a major dent into her budget, but she wishes that she had it anyway. However, like so many others we met, Sarah fell through the safety net because she failed to follow administrative procedures that would have secured her insurance from her employer, and now she must wait until the next enrollment period. It may be tempting to blame this on Sarah herself; after all, she could have had insurance if she had paid attention and filled out the forms on time. However, our telephone surveys and in-depth interviews reveal that Sarah is not alone in her mistake—many families are confused about the rules, procedures, and timeliness needed to secure health insurance. Why is this? Families leaving welfare often have exceedingly turbulent lives. They are trying to juggle multiple roles, including being both the breadwinner and primary parent on a very limited income, and, with few resources, small daily inconveniences add up. There is generally little or no money for prepared food, a weekend babysitter, or even to buy a washing machine to make daily life easier and less stressful. The demands can often result in a “poverty of time.” For example, they are often reliant on public transportation and unable to make even quick or unexpected trips to the laundromat or grocery store by car. Additionally, purchases must be judiciously well timed and researched, finding the best deals possible on everything from diapers to dish soap. It should come as no surprise that they often “fail” in juggling their many roles and responsibilities. In Sarah’s case, at the time she was supposed to be following through on health insurance forms, her father died, her mother (one of Jake’s caregivers) was out of the country, she worked full-time, cared for her

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son by herself, and she was in the midst of moving. She was unaware of the procedure for getting insurance coverage started and simply forgot to follow up on it during the enrollment period allotted by her employer. She is now paying a high price for her forgetfulness. Currently she relies on Jake’s school to provide the assistance and equipment that he needs. However, his school does not go year-round. Unless she secures insurance for herself quickly, she may not be able to meet all of his needs. As Sarah explained: I had OHP for several years and because I was no longer on food stamps or getting cash assistance or anything of that nature . . . I would have to reapply at the beginning of the year. So in January I would have to apply to continue OHP. I opted not to because I could get health insurance through work and we had arranged that my work would pick it up at the beginning of January and I’d be covered. I think I skipped a procedure somewhere along the line because they’re not taking the premiums out of my account, nor could I ever get any confirmation that I had health insurance. By the time, like I said, my father died in February, my mother was in the Philippines, I was trying to get this house. By the time I realized what was going on, it dawned on me that I didn’t have confirmation that I had insurance. . . . It’s one of those stupid things, you never think you have to have insurance until you have to have insurance.

Sarah knows that caring for a seriously disabled child is a lifelong commitment and she fears for her son and his future. She dreads the day when she is no longer able to physically care for Jake, who is still physically growing quickly, as would a normal eight-year-old. Additionally, she is concerned that people he meets in his everyday life will mistreat him or ignore his needs. Sarah told us that she does not have the money to buy the kind of care that she would wish for him and to achieve the security she craves: You can’t have somebody come over and babysit at your house for five dollars. You’re not talking about a kid who can say, I’m tired, I want to go to bed, or can we watch this movie. Or I’m hungry now. My fear of having any other sort of daycare take care of him is because of the fact he doesn’t complain about things. Does that mean he’s going to sit in the corner for an hour and a half? There’s no way of knowing, and in this day and age, God knows, he can’t tell me if someone is doing anything

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unmentionable to him. I just pray to God every time he leaves the house that the person I’m sending him to school with is dependable and not some weirdo. Nowadays you hear about all that stuff on TV about how a child was molested in daycare. Good God, you’re paying these people to do nasty things to your children.

As our time with Sarah drew to a close, we could not help wondering, as we contemplated the enormity of Jake’s needs, if she felt as if she were a whole and distinct person or rather some sort of extension of him and his health care needs. Though she remains undaunted, Sarah’s case reveals the precarious condition parents of children with chronic conditions face. We begin by focusing on the health problems of both adults and children, and how their health changed in the year between interviews. At the first telephone survey most families were in the midst of receiving one year of transitional OHP/Medicaid benefits. One year later these transitional benefits had expired, although some respondents continued to qualify for and receive them. We pose two fundamental questions: (1) What is the health status of respondents and their children? and (2) How has their health changed during the one-year period after they lost their transitional benefits? Overall, the telephone survey and interview data indicate that the health of families leaving TANF reflects the health disparities that are known to exist for individuals living at or near poverty. The research is unequivocal: the poor are more likely to be sick, have more chronic and acute conditions, and are in worse overall health than are those who have more financial means (Children’s Defense Fund 2005; Centers for Disease Control 2004; Isaacs and Schroeder 2004; Levin-Epstein 2003; Seguin et al. 2003; Wood et al. 2002). Why is this? The relationship between poverty and health is complex. Poverty is both a cause and a consequence of poor health. For example, one way that poverty causes poor health is by limiting housing options to those that are dangerous, unsanitary, or in other ways compromise health. We know that many poor people live in damp, dirty, crowded, dangerous, and disease-ridden conditions that may lack proper cooking or sanitation facilities (Joint Center for Housing Studies 2003). Poor children are 3.6 times more likely to have signs of rats or mice in their homes, are 3.4 times more likely to have family members sharing bedrooms, and are 2.7 times more likely to have spent time in a house that was considered by a parent or other survey respondent as “too cold” (Children’s Defense Fund 1994). Exposure to rodents, crowding, and cold can wreak havoc

Health Status and Health Changes

33

on a family’s health and well-being. For example, manifestations of rats and mice, in addition to the more obvious concern associated with bites, can contribute to asthma and other respiratory problems by filling the air with rodent urinary proteins (Swanson, Agarwal, and Reed 1985). Crime-ridden neighborhoods, nutritionally void diets, hunger, inadequate access to health care, and many other factors associated with poverty can, indeed, make people very sick (Brooks-Gunn and Duncan 1997; Seccombe 2007a). However, in contrast, poverty can also be a consequence of poor health because persons may lose their jobs, along with their health insurance, because of an illness or injury, and no longer be able to pay their bills. They could lose their car or even their house because they can no longer afford to make payments. Health care is expensive. Without insurance to pay some of the bills, and without a steady income, even formerly middle-class families can experience mounting debt and risk impoverishment. Not unexpectedly, many of our respondents and their children are in “poor” or only “fair” health. Several specific conditions were commonly reported among adults, including mental illness, asthma, diabetes, dental conditions, and women’s reproductive health issues. Common ailments among children of respondents were viral and ear infections, asthma, dental conditions, mental illness, Attention Deficit Hyperactivity Disorder (ADHD), and learning disabilities. For many health conditions, the numbers reported in our sample were higher than state and national prevalence rates. Adult Health

Our respondents have significant health problems. One common way to measure health is by a series of health-related questions commonly known as the Short-Form 12 (SF-12) (Ware and Sherbourne 1992) (fig. 2.1). The SF-12 is an abbreviated version of the commonly used SF-36 Health Survey, which has been extensively tested and validated. It measures several aspects of health, including physical functioning, pain, mental health, and general overall health. Scores are normed with a low of zero and a high of one hundred, such that a score of fifty represents the national average, with lower scores indicating poorer health and higher scores indicating better health. We used the physical component summer scale (PCS of the SF-12), which correlates strongly with the more detailed SF-36 Health Survey. Using this well-validated scale, we found that our respondents are in poorer health than the national average, have less vitality, experience more pain, and have greater mental health problems.

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Related to these, our respondents noted greater difficulty in emotional, social, and physical functioning. Our telephone survey investigated other dimensions of health as well, which are reported in table 2.1. Statistical tests were conducted to determine differences between the first and second waves of the telephone survey (significant differences are noted with an asterisk). The data elaborate on the poor health noted in the SF-12 results. Using a common single-item measure that asks respondents to evaluate their health as poor, fair, good, very good, or excellent, only one-third rated their health as excellent or very good, compared with nearly two-thirds of the general population aged eighteen to forty-four (Schiller, Adams and Coriaty Nelson 2005). About one-quarter of our respondents evaluate their health as only fair or poor, compared to only 6 percent of adults nationally between the ages of eighteen and forty-four. Moreover, national data reveal that nearly 20 percent of families living below $20,000 and 22 percent of poor families report only fair or poor health; thus our respondents report worse health than their peers (Schiller, Adams, and Coriaty Nelson 2005). We suspect that TANF leavers as a group may be more vulnerable than other poor families as they attempt to transition from welfare to work. The data also reveal that our respondents’ health status declined over the course of the year. By the second interview, 30 percent claimed to be in only fair

Figure 2.1

Norm-based scoring of SF-12 profile, TANF leavers.

Health Status and Health Changes

35

or poor health. Likewise, when asked directly, respondents were significantly more likely to report that they and their children were “less healthy compared to six months ago” at the second survey than they were at the first. Which groups were more likely to have poorer health? Our Oregon respondents were coded into three racial/ethnic categories. Some groups were combined with others because their small sizes prevented meaningful independent analyses. These categories include: (1) White (N = 396)/Asian (N = 6)/ Other (N = 13); (2) Hispanic (N = 91)/Native American (N = 11); and (3) Black (N = 30). Data on five respondents were missing. These group sizes reflect the demographic characteristics of Oregon and approximate the statewide TANF caseload data provided to us by the State of Oregon. Using these categories, we found differences across race and ethnicity. Thirty-eight percent of Hispanic and Native Americans rated their health as only fair or poor, compared with 27 percent of blacks, and 28 percent of those categorized as whites, Asians, or “others.” We also found residential differences, with urban residents in poorer health. An urban or rural designation was assigned following the 2000 Census Bureau definitions for rural and urban. Respondents were coded as “urban” or “metropolitan” if they resided in (1) an Urbanized Area (UA), a contiguous, densely settled zip code (with at least 500 people per square mile (ppsm) that encompasses a population of more than 50,000); or (2) an Urban Cluster (UC), a contiguous densely settled zip code (5,000 ppsm) that together encompasses a population of at least 2,500 people but less than 50,000. Respondents not falling into either category were defined as “rural” or “nonmetropolitan.” Using this definition, 84 percent of our respondents (N = 463) were classified as urban dwelling at Wave 2, and 16 percent (N = 89) of our respondents were classified as rural dwelling. Thirty-two percent of adults living in metropolitan areas reported only fair or poor health, compared to just 21 percent of persons living in nonmetropolitan or rural areas. Limitations in Activities

National data indicate that the poor are over twice as likely as the nonpoor to report that they have some limitation in their usual activities caused by a chronic condition: 26 percent versus 10 percent, respectively (Schiller, Adams, and Coriaty Nelson 2005). Paralleling national trends, nearly one-quarter of our respondents reported that they are limited to some degree in performing moderate activities because of their health. When asked directly if their accomplishments over the past week have been limited by their health, again

Table 2.1

Physical and Mental Health Status (percentages) Wave 1

Wave 2

General Health Poor

4.3

4.3

Fair

19.4

25.7

Good

41.8

37.9

Very Good

24.5

24.6

Excellent

10.0

7.4

3.2

3.1*

5.7

13.5*

About the same

74.6

68.1

More healthy

19.7

18.4

Mean (1 = Poor, 5 = Excellent) Respondent and children’s health vs. six months ago Less healthy

Mean (1 = less healthy, 3 = more healthy)

2.1

2.0*

Respondent’s current health vs. six months ago Much worse

1.1

0.7

Worse

9.1

11.3

About the same

51.4

54.3

Better

27.0

24.0

Much better

11.4

9.8

3.4

3.3

Not at all

77.0

78.2

Yes, limited a little

11.4

13.3

Yes, limited a lot

11.6

8.5

Mean (1 = much worse, 5 = much better) Limited ability for moderate activities

Accomplishments limited in past week by physical health Not at all

75.4

70.8

Yes, limited a little

13.2

16.7

Yes, limited a lot

11.4

12.5

17.5

20.4

4.4

3.8

Health interferes with job Diagnosed Health Conditions Diabetes High blood pressure/hypertension

9.6

Asthma

19.6

Allergies

28.8

6.9* 21.4 41.7* (continued)

Health Status and Health Changes

37

Table 2.1 (continued) Wave 1

Wave 2

22.1

23.2

9.2

12.9*

Learning disability

8.0

13.1*

Hearing impairment

4.9

6.7

27.5

39.1*

8.3

17.7*

24.6

28.8*

Psychiatric or emotional disorder Mobility problems

Chronic pain or other chronic problem Pregnant in last six months Clinically depressed (CES-D) *p < .05.

about one-quarter reported that their health has, indeed, limited them in their accomplishments. In fact, about one-fifth reported that their health interferes with their ability to get or keep a job. However, the self-reported limitations in activities did not change significantly over the survey year. Specific or Chronic Conditions

Many respondents have been told by their doctor that they have a serious or chronic health problem, also shown in table 2.1. For example, at the initial interview, 20 percent had asthma, 29 percent reported allergies, and 28 percent reported chronic pain, most often associated with back problems, arthritis, or migraine headaches. Often they suffered from more than one condition. Reports of several conditions changed over the year between interviews. Fewer people reported having high blood pressure at the second survey. However, more people reported having problems with allergies, mobility, learning disabilities, general pain, or another chronic problem. Moreover, in the second survey, we asked respondents to evaluate change in their conditions. With the exception of high blood pressure and reported learning disabilities, their chronic conditions had become worse rather than better over the past six months, as shown in table 2.2. One commonly reported chronic condition in our study is asthma, a debilitating disease of the respiratory tract. Twenty percent of adults reported that a doctor has told them they have asthma, and 24 percent of respondents with asthma reported that it had worsened in the past six months. Recent trends in asthma have included an alarming rise in the number of adult onset cases. In Oregon, 9.2 percent of the adult population has asthma,

Table 2.2

Health Condition Changes Over Last Six Months, Wave 2 (percentages)

Diabetes (N = 19) Worse

31.6

About the same

42.1

Better

26.3

High blood pressure/hypertension (N = 36) Worse

16.7

About the same

36.0

Better

47.2

Asthma (N = 117) Worse

23.9

About the same

59.0

Better

17.1

Allergies (N = 230) Worse

33.5

About the same

51.3

Better

15.2

Psychiatric or emotional disorder (N = 127) Worse

26.8

About the same

44.1

Better

29.1

Mobility problems (N = 71) Worse

54.9

About the same

35.2

Better

9.9

Learning disability (N = 72) Worse

8.3

About the same

73.6

Better

18.1

Hearing impairment (N = 36) Worse

33.3

About the same

66.7

Better

0.0

Chronic pain or other chronic problem (N = 214) Worse

44.9

About the same

45.3

Better

9.8

Health Status and Health Changes

39

above the national rate of 7.5 percent, or one out of fifteen Americans (Asthma and Allergy Foundation of America 2005; Oregon Department of Human Services 2003; Morbidity and Mortality Weekly Report, September 27, 2002). Over 7 percent of Oregon children have asthma, and roughly 2,500 asthma-related hospitalizations occur in Oregon each year. Moreover, poor access to medical care and low income are associated with higher rates of asthma (Asthma and Allergy Foundation of America 2005; Dey and Bloom 2005). Symptoms can vary from mild to extreme; however, asthma can be fatal. Mortality rates for asthma have increased significantly over the past twenty years—each year 5,000 people die from asthma, and it is a contributing factor in nearly 7,000 other deaths annually (National Center for Health Statistics 2001). Emma, who lives near the coast, has very mild symptoms and reports: “I have light asthma, but my inhaler lasted me for over a year; I don’t use it that much.” In contrast, nineteen-year-old Abigail has severe asthma and often requires emergency room visits to treat her attacks: “I mean, it’s a lifethreatening disorder. Most times, I’ve been taken in the ambulance, so it’s like, there’s no denying the fact that I need to be there.” National studies reveal that asthma accounts for one-quarter (2 million) of all emergency room visits each year (National Center for Health Statistics 2001). Despite the widespread knowledge that tobacco smoke is harmful to the health of people with asthma, 31 percent of Oregon adults with asthma smoke cigarettes, compared to 23 percent of adults without asthma (Oregon Asthma Program 2003). Additionally, among Oregon’s population insured by OHP/ Medicaid, about 17 percent of adults report having asthma and 43 percent of them smoke (Oregon Medical Peer Review Organization 13 December 2004). Not surprisingly, a number of respondents blamed current or previous smoking as a culprit in their respiratory disease. A person of low socioeconomic status (SES) is strongly associated with a greater risk of starting to smoke, becoming a regular smoker, and having lower cessation rates than high SES individuals (Jarvis 2004). It is used as a coping method, albeit a dangerous one, for other stressors in one’s life. Madison is a smoker with asthma. When asked a question about her general health she let out a heavy sigh and replied, “I’ve been OK. I haven’t been really sick lately and I just now tried to quit smoking. So, I’ve been having this craving all day. And, the point is that I’ve noticed that I’m coughing here and I think that’s just trying to clear out my lungs. And I noticed that every time I stop having a cigarette, I cough. So, I think it’s kind of getting out, cause I do have asthma. But, I tend not to want to rely on my inhaler even though

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I probably should cause I don’t take it like I normally do, I just take it when I need it. But I don’t want to be hooked on medication. I just have this thing about not wanting to be hooked.” Women’s Reproductive Health

Women’s reproductive health issues were another common topic among our respondents. The majority of them were young women in their childbearing years, and more than half shared stories related to reproductive health. Many of their stories had to do with pregnancy and birth experiences. As shown in table 2.1, 8 percent of our respondents had been “pregnant in the previous six months” at the first interview, which more than doubled to 18 percent one year later. Several respondents reported experiencing complicated pregnancies. Penny told us about her preeclampsia, which caused her to begin premature labor: “Well, I was coming in and out of the hospital. The last couple of months were really hard . . . they had to stop my labor a couple of times. I had preeclampsia, so he was born four weeks early.” Sometimes women suffer more than one complication at a time. Laura is a twenty-five-year-old who recently moved to Oregon. She left Alaska while already pregnant to get away from an abusive husband. As Laura told us, “I had been warned in Alaska that I was becoming preeclampsic and toxemic, and my weight had varied a lot. My blood pressure was varying a lot. When I came down here, all the OB doctors were full. So I had to go through the health department. I kept telling him that there was something wrong. I had to go to the bathroom all the time. I couldn’t always make it to the bathroom. He was always like, ‘Well, you’re pregnant.’ I ended up in the hospital at five o’clock one morning with a severe kidney infection.” Kia is a forty-six-year-old metropolitan woman. She has several family members who have had breast cancer and she herself suffers from fibrocystic breast disease. She underwent a biopsy for a benign breast tumor. Kia understands the importance of regular mammograms but due to work conflicts cannot schedule them as often as she needs. She also suffers from fibroid uterine tumors, and said that she was scheduled for an oblation at the time of her second interview with us: “I’m finally going to have an oblation next month. It’s a major D&C, basically cauterized the uterine wall, and that’s not necessarily doing something about the fibroids, but the abnormal bleeding is probably symptomatic of it and we’re going to deal with it anyway.” Chelsea is a young mother of two and lives in central Oregon. She has severe endometriosis that forced her to leave her job. At our first interview,

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her providers were discussing the possibility of a hysterectomy even though she was only eighteen years old. By the time of the second interview she had jumped through every referral hoop imaginable trying to get adequate, yet less drastic treatment for her increasingly symptomatic condition. As Chelsea explained, “I was having three periods a month, and then if I was to lift anything heavy I would start bleeding and they wouldn’t be able to stop it. I had a real hard time with that. Then they put me on several different medications and they finally got me under control.” The medications stopped working and Chelsea sought care again. There are surgical alternatives available for the treatment of endometriosis, but the Oregon Health Plan (OHP) would not cover them. She told us, “With the surgery, you have to have so many procedures to get the surgery, like put on so many types of birth control, go through other things, I did all those. They tried me on ten to twelve different kinds of birth control, everything, and they still wouldn’t let it go through.” Chelsea had become so overwhelmed and exhausted by having to pursue these ineffective treatments that she had stopped seeking care. Her story illustrates the complexities of navigating within the OHP Medicaid system and the undue stress on clients that it can produce. Nationally there is much concern about the Medicaid managed care system—from consumers to providers—and the type and manner of service delivery. Media attention has also been directed at the bureaucratic obstacles that many families face. From a client perspective, there are endless barriers to timely and appropriate care such as the lack of providers willing to accept Medicaid patients as well as formidable and seemingly arbitrary rules about levels of coverage. Equally concerned are physicians, who are charged with understanding and applying these rules that can be complex and confusing for them as well. Pharmacists, too, may have limited knowledge of program requirements and often, for example, collect copayments when it is inappropriate to do so (Fahlman, Stuart, and Zacker 2001). Consequently, there are significant opportunities for states to streamline, integrate, and properly disseminate information about program guidelines. Mental Health

Many respondents reported that they suffered from depression or other mental health conditions. Nationally, between 2.4 and 3.3 percent of the adult population meet criteria for a serious mental illness (SMI) in any given month and between 5.4 and 7.2 percent do so at some time during the year (U.S. Department of Health and Human Services 2004). The demographic risk profile

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for SMI includes being female, young or middle-aged, unmarried, and of low socioeconomic status. National prevalence rates for depression are around 5 percent and annual prevalence for women is around 12 percent (CureResearch.com 2005). Depression is more prevalent among the poor. The struggle to feed, clothe, and house a family in dignity can be very difficult. A study that analyzed data from a survey of nearly 2,500 Illinois residents found that residents of disadvantaged neighborhoods—characterized by a high percentage of poor, motheronly households—had higher levels of depression than residents living in less disadvantaged neighborhoods. More than half of this depression could be accounted for by the greater numbers of disadvantaged residents, such as the unemployed, women, and individuals with low income, all of whom are known to have higher depression levels than their counterparts. However, the author also found that disadvantaged neighborhoods exert their own unique impact on residents’ mental health, above and beyond the characteristics of their residents, through the breakdown of social control and order. “In disadvantaged neighborhoods, residents are more likely to report that there are too many people hanging around on the streets, using drugs, and drinking; that there is a lot of crime, graffiti, and vandalism; and that their neighborhood is not safe. These signs of disorder are distressing” says Ross (2000:1). About a quarter of our respondents have been diagnosed by a physician as suffering from a psychiatric or emotional disorder, and a quarter are considered depressed, using a common mental health scale, as shown in table 2.1. We also found that depression increased significantly between the two waves of surveys. To measure depression, we used the shortened version of the Center for Epidemiological Studies Depression Scale (CES-D) (Radloff 1977; Santor and Coyne 1997). Using the past week as a reference, items include, “I was bothered by things that usually don’t bother me,” “I felt that I could not shake off the blues even with the help of my friends, “I had trouble keeping my mind on what I was doing,” “I felt depressed,” “I felt that everything I did was an effort,” “My sleep was restless,” “I was happy,” “I enjoyed life,” and “I felt sad.” Answer categories ranged from zero (low) to three (high). These items were then rescored as “zero” if zero or one had been selected, or “one” if two or three was selected. Then, the revised scores were totaled, and those ranging from 0 to 3.9 were considered (1) “not depressed,” and scores 4 to 9 were categorized as (2) “depressed.” Using this measure, 25 percent of respondents were classified as depressed at the first survey, increasing to 29

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percent one year later, a statistically significant increase. Additionally, when asked whether a doctor had informed the respondent that he or she had a psychiatric or emotional disorder, nearly one quarter answered “yes” at both waves of data collection. Our qualitative interviews also reveal how depression and mental illness affected our respondents. When we met Angela, a metropolitan mother of an eight-year-old boy, we learned that severe depression led to her being on welfare. Angela had previously experienced domestic violence and was receiving counseling for posttraumatic stress disorder. Unfortunately, Angela had lost her OHP benefits by her second interview due to several overdue child support payments paid to her one month that pushed her income over the cutoff threshold. She was feeling overwhelmed and helpless to make any meaningful progress. At the time of her interview Angela was struggling to pay for her counseling out of pocket: “I think that’s part of my depression. I feel like it’s a never-ending cycle. I can never just get well and get the help I need to move on because I don’t have any money. I’m never getting ahead.” Many respondents told us of lifelong struggles with their mental disorders, including past institutionalization, and the devastating effects for themselves and their families. Cindy suffers from bipolar disorder. Her story exemplifies the struggle of those with chronic mental illness. The first time we interviewed Cindy, she was employed as an assistant manager at a twentyfour-hour restaurant and had health benefits through OHP. By the time of her second interview she had lost her job and been evicted from her apartment. During this time her ten-year-old son requested to be removed from her home and placed in residential treatment. Although unclear from her interview exactly what led to these events, it is apparent that her mental illness played a large role, as Cindy describes: Supposedly I had a psychotic episode. They think I was hallucinating . . . I was saying somebody was watching me; somebody was breaking into my apartment, so they were saying I was acting paranoid. When I felt like I was being threatened I would go bang on a door with a baseball bat. It was really funny because after that, I would sneak around in the daytime and try and look in, the manager came to my apartment and said, “Were you in the back looking in that apartment?” I said, “Yeah, why?” He said, “You can’t do that.” I said, “Why not, it’s vacant. What do you have to hide? I’ll look in there if I want to.” I’m supposed to be crazy. I’m not crazy. I sat outside my apartment

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watching my apartment, see what I can see, people going in or out. Scared the heck out of one of my neighbors because she didn’t know I was out there. She opened her drapes and I’m sitting in a bush. She comes and asks if I’m all right, “I’m just fine.” Then Project Respond was called several times.

Soon after these events, Cindy was late paying her rent and was subsequently evicted from her home. She was homeless for a brief period but managed to secure temporary housing at a local shelter. The shelter was where we met up with her to conduct the second interview, when she said, “So not only did I lose my apartment, I lost my friends, I lost my livelihood, I lost my son, I lost it and I have been working for five years to try and keep that together.” When we asked Cindy how her health had been affected since losing OHP, she answered, “I believe my mental health situation is much worse because it’s just more stress, more and more and more. I do not understand how the state can take somebody that is medically not able to work and say “see ya.” Here we are. At least I have a bed. I’m grateful for that.” Stress and depression come from many sources, often exacerbated by the complexities of living in poverty. Randi is a mother of three living in the eastern region of the state who has struggled with mental health problems all her life. She has an undisclosed mental condition for which she has been institutionalized in the past. She has lost custody of her children more than once, yet attempts to maintain contact with them when she can. At the time of the second interview, her fifteen-year-old son was in a custodial sex offender treatment program, and her twelve-year-old daughter was in foster care after having been raped by her brother and father. Weight, Obesity, and Food Insecurity

An important health concern in America is obesity, and many of our respondents were overweight or obese, as reported in table 2.3. To calculate overweight and obesity rates, respondents were asked their weight and height, and from this information Body Mass Index (BMI) scores were tabulated. Overweight is defined as a BMI of 25–29.9, and obesity is defined as a BMI score of over 30 (World Health Organization 1997). Twenty-nine percent of respondents reported weight and height data indicating that they are overweight, a figure slightly less than the 2002 Oregon and nationwide averages (37 percent) (Centers for Disease Control 2004). However, over a third of our sample was obese, significantly higher than the one in five average in Oregon and nationally (Centers for

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Disease Control 2004). Moreover, the mean BMI score rose significantly over the year between telephone surveys. Most Americans are aware of hunger and malnutrition in developing nations, but are less familiar with what is occurring in the United States. Nonetheless, many poor Americans do suffer from hunger and face critical nutritional deficits, and their numbers are rising (Chilton and Giardino 2004; Furness et al. 2004). The U.S. Department of Agriculture (USDA) estimates that more than 38 million Americans, including nearly 14 million children, are “food insecure,” defined as not having access to enough food at all times for active, healthy living (Nord, Andrews, and Carlson 2005). Most food-insecure households avoid hunger by limiting the types of food they buy and relying on public or private food charities. However, according to the USDA, nearly 11 million persons suffering from food insecurity also experienced “food insecurity with hunger” (Nord, Andrews, and Carlson 2005). They do not have enough nourishing food available to them on a regular basis. They live in households with limited or uncertain access to food and sometimes go without food at some point every month, suffering the immediate pain of hunger and the more long-term consequences of malnutrition. Food hardships are most pronounced in poor, minority, and female-headed households. An increasing amount of public attention has been given to this phenomenon, such as National Public Radio’s four-part series in November 2005 on “Hunger in America,” which explored the faces, causes, and struggles of food insecurity. Without proper nutrition, both adults and children are in a weakened state. They run the risk of more frequent colds, infectious diseases, impaired brain function, stunted growth, and are more vulnerable to lead and other environmental toxins. Children may be the most vulnerable victims. One study based on caregivers of over 11,000 children in five states and Washington D.C. reported that, after controlling for relevant confounding variables, food-insecure children were twice as likely to be in only fair or poor health, and were one-third more likely to have been hospitalized since birth (Cook et al. 2004). Without adequate food and nutrition they are more likely to show signs of iron deficiency, a major cause of anemia, which is a strong predictor of learning and behavioral problems in later life. They do not perform as well as other children in school, and have higher levels of aggression, hyperactivity, anxiety, and passivity. In a national study, kindergarteners from food-insecure homes scored lower on math tests taken at the beginning of the school year. They also learned less over the year (Winicki and Jemison 2003). Hungry and malnourished children miss more days from school, are more likely to be tardy, are more likely

Table 2.3 Weight, Obesity, and Food Security (percentages) Wave 1

Wave 2

1.6

0.8

Normal weight

35.1

35.5

Overweight

28.8

27.6

BMI Categories Underweight

Obese

34.5

36.1

Mean of continuous BMI score

28.28

28.72*

Food Security Food secure

47.7

Food insecure only

30.2

Food insecure with hunger

22.2

Food insecure and BMI Normal/Underweight

30.2

Overweight/Obese

69.8

Food insecure with hunger and BMI Normal/Underweight

37.0

Overweight/Obese

63.0

Used food charities within past six months

27.2

Cut size of meals in last twelve months due to lack of money

31.7

How often were meals cut (N = 175) In only one or two of past twelve months

30.3

Some months but not every month

32.0

Almost every month

37.7

Cut size or skipped children’s meals due to lack of money

8.3

How often were children’s meals cut (N = 46) In only one or two of the past twelve months

30.4

Some months but not every month

32.6

Almost every month

37.0

Ate less than should have in last twelve months due to lack of money

35.9

Hungry but didn’t eat in last twelve months due to lack of money

23.3

Food didn’t last, no money to get more Never

40.7

Sometimes

45.6

Often

13.6 (continued)

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Table 2.3 (continued) Wave 1

Wave 2

Worry about where next meal comes from Never

47.7

Rarely

23.2

Sometimes

17.1

Often

6.9

Always

5.1

*p < .05.

to have repeated a grade, and are almost twice as likely to be suspended from school (Murphy et al. 1998; Alaimo, Olson, and Frongillo 2001; U.S. Conference of Mayors 2004; Children’s Defense Fund, 2005). Despite the many respondents in our study who are overweight or obese, over one-half of respondents also suffered from “food insecurity” or “food insecurity with hunger,” as shown in table 2.3. Thirty percent of our respondents could be classified as food insecure, and another 22 percent could be classified as being food insecure with hunger. Our findings are comparable with the rates reported by Acs and Loprest in their multisite evaluation of how TANF leavers are faring (Acs and Loprest 2004). They found that 32 to 46 percent of respondents in their sample experienced food insecurity, and between 16 and 26 percent experienced food insecurity with hunger since leaving TANF. At first glance, it may seem odd that people who are food insecure or hungry may also be overweight. However, about two-thirds of our respondents who suffered from food insecurity or food insecurity with hunger were either overweight or obese. Although the reasons are complex and not well understood, there is evidence that low-income families must disproportionately rely on nutritionally void, but calorie-dense food for many reasons (e.g., convenience, cost, availability, comfort, lack of understanding). For example, a family without reliable transportation may shop at a neighborhood convenience store that typically sells food with high fat (often trans-fat) and sugar (often high-fructose corn syrup) content. Others who need inexpensive ways to fill their stomachs may rely too heavily on starch and carbohydrates to stretch their diets. Some may find themselves subject to a “feast or famine” rotation that can disrupt their metabolisms. For example, many respondents spoke

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to us of grocery shopping only once a month when they received their food stamp allotment; however, the food rarely lasted throughout the month. When we asked respondents about their quantity of food at the second interview, nearly 60 percent reported that their food did not last, and they sometimes or often did not have money to get more. What did respondents do for food? As shown in table 2.3, 27 percent reported using food charities within the past six months. Twenty-three percent told us that they had been hungry but had gone without food at some point during the past year because of insufficient money to buy food. Nearly one-third reported having cut the size of meals over the past year due to a lack of money, and 8 percent reported having cut the size of their children’s meals. Over onethird of those who reported cutting the size of meals claim that they have to do this almost every month. About 30 percent of our respondents revealed that they worry sometimes, often, or always where the next meal will come from. Not surprisingly, being food insecure and hungry is highly associated with depression. Worry over inadequate food supplies can lead to depression and anxiety (Hamelin, Habicht, and Beaudry 1999; Siefert et al. 2004). For example, in a qualitative study of ninety-eight low-income households, researchers found that respondents suffered many detrimental effects from food insecurity, including a preoccupation with access to enough food, lack of control over their situation and need to hide it, and disrupted eating patterns. Researchers also found that respondents felt an acute sense of alienation, frustration, powerlessness, guilt, shame, and inequality. We met Tammy, a mother of six, who illustrated the difficulty some parents have in keeping their households adequately fed, particularly in large families, when she said: Welfare said I had to have an address on my husband and they asked my husband for an address and he says, “I’m sleeping in my car,” and that’s all he keeps telling me. If he’s not sleeping in his car he sleeps at his friend’s house for a week or two, so he doesn’t have an address, so I lost my insurance from welfare, food stamps, everything. . . . I tried working with her, told her the situation that he stays different places and she says she needs an address with his name on it from a company. [INTERVIEWER: How are you surviving?] Hanging in there. I pay all my bills and everything; buy a little groceries here and there. Sometimes we do [run out of food]. Once a month I go to the Agape House and then there’s a food bank in Stanfield you

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can go, so every two weeks I try to get over there so we have something in between and that. It’s like a food bank, they give you food enough to last, it’s supposed to be a month but it never does. It lasts maybe two days. [INTERVIEWER: After it runs out, then what do you do?] Just find something we have and wait till the child support check comes in, then we get a little bit here and there. . . . My kids are not vegetable eaters, they like fruit but not that often. They’re mostly meat and potatoes, and that’s what I try and have here, meat and potatoes, noodles and tomatoes, something, I try to have something for them, and with school going on it helps a lot and they get at least two good meals and I scrounge up something for them at night time, even if I have to go to my sister and rob [her refrigerator].

The Food Stamp program (FSP) is the primary U.S. policy to reduce hunger and food insecurity. It was created in the 1960s and extended nationwide in 1974 to increase the food purchasing power of low-income households so that they are better able to afford a nutritionally adequate low-cost diet (Castner and Schirm 2005; U.S. Department of Agriculture Food and Nutrition Service 2005). It has been amended considerably since then, designed to both extend the program to the neediest, and to cut back program growth. Today, the FSP is the largest of the fifteen domestic food and nutrition assistance programs administered by the USDA’s Food and Nutrition Service and costs over $27 billion (U.S. Department of Agriculture Food and Nutrition Service 2005). In 2005, nearly 26 million people living in 10.5 million households received food stamps each month, with an average benefit of $200 per household. Food stamps are no longer “stamps” as originally designed; they are electronic benefits similar to a debit card that can be used like cash to buy food at any of 150,000 eligible stores across the United States. Food stamp allotments are based on the “Thrifty” food plan developed by the USDA, the least expensive of the four food plans they created. It is a lean budget, and it provides little more than half the amount of money the USDA affords its Liberal food plan that is more in line with spending habits of middle-class America. Even the USDA has emphasized the inadequacy of the Thrifty food plan, “The cost of this plan is not a reasonable measure of basic money needs for a good diet,” and suggested it be increased by approximately 25 percent (Peterkin and Kerr 1982). Thus, while many of our respondents received food stamps, they remained food insecure.

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Moreover, one little known fact is that only about 56 percent of eligible people actually receive food stamp benefits. The USDA’s budget request for fiscal year 2006 includes a performance target to reach at least 68 percent of the population by 2010 (Castner and Schirm 2005). Participation rates vary widely from state to state, according to federal data, ranging from around 84 percent of people eligible in Oregon, to only about 43 percent of those eligible in Massachusetts. Why would an eligible person fail to receive food stamps? Reasons vary: persons may not know about the program; there may be bureaucratic obstacles that inhibit persons from applying or that render them ineligible, as in Tammy’s case; persons may have logistical barriers such as language differences, transportation, or child care that prevent them from applying for benefits; they may be dependent children and unable to apply for benefits for themselves; or they may proudly not want to receive government aid. Dental Health

Dental health is a critical, but often overlooked dimension of health. Untreated dental caries can cause unnecessary pain and suffering, and can have further effects on social and emotional well-being. Diseased teeth and gums can be a portal through which other diseases enter the body, and a person with poor oral health is at risk of systemic health problems. Dental health can be linked to overall health, with research showing that people who suffer gum disease are at a higher risk of other diseases such as heart disease, or respiratory problems such as pneumonia. Dental health also has social significance. Sered and Fernandopulle, in their book Uninsured in America, refer to teeth as “caste markers” (pp.165–166) (Sered and Fernandopulle 2005). They point out that many middle-class people identify bad teeth as a sign of poor parenting, low educational achievement, or slow or faulty intellectual development. Poor teeth can interfere with the ability to find and keep a job. Teeth have become an outward sign of caste—poor teeth “scream” poverty more ferociously than other physical attributes. Poor Americans are nearly twice as likely to have untreated dental caries than the nonpoor (Centers for Disease Control 2004), and many families we interviewed experienced significant dental issues. Julie is a twenty-four-yearold woman living in Portland, with a story that indicates the far-reaching repercussions of poor dental health. Like others, she told a story of having some of her teeth pulled, only to find out later that these extractions were probably not medically necessary. Her story is similar to many others we heard: “It was terrible. I just had the worst experience. . . . They took out a tooth that

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supposedly wasn’t good, but come to find out that it was good. And they pulled out this tooth, they said it was very bad, but I was told by them that it couldn’t have been saved.” For months Julie suffered the embarrassment of a visibly missing tooth: “When I would smile you could see the hole. My husband laughed at me, and people looked at me funny.” Her dental provider insisted that there was nothing that could be done to improve her appearance: “So I asked ’em if they were going to put something up there, ‘No, there’s nothin’ we can put there, no fake tooth, nothin’ we can do.’” Julie began having problems with another tooth and was persuaded by her mother to try a different provider. He performed a root canal on her tooth and provided her with a permanent synthetic tooth to replace the missing one. The new provider told her that the extraction she had undergone was not necessary. Despite undergoing this dental error, Julie was thankful that she was still covered by her twelvemonth transitional OHP/Medicaid benefit; had she needed the work done just a few months later, after the benefit ran out, she would not have been able to have any dental work done at all. Missing and rotten teeth can have a tremendous influence on the selfconfidence and impression management needed to pursue and procure employment. Sometimes welfare offices will assist women whose teeth are particularly decayed and unattractive or missing. Amera had suffered years with teeth that were visibly decaying. When she entered the jobs skills program through TANF, she was referred for dentures because her caseworker thought she would have difficulty finding work due to the appearance of her teeth: “So they helped, you know, get that covered. Which I thought was pretty sweet. Twenty-five hundred dollars worth of dental work.” Children’s Health

Children are not spared the health disparities that their parents experience (Federal Interagency Forum on Child and Family Statistics 2005; Schiller, Adams, and Coriaty Nelson 2005). The relationship between poverty and children’s health is firmly established (Children’s Defense Fund 2005) (Isaacs and Schroeder 2004; Seguin et al. 2003). Nationally, only 70 percent of children in families below the poverty line were reported by their parents to be in very good or excellent health in the National Health Interview Survey (NHIS), compared with 90 percent of families with incomes of at least 200 percent of the poverty line (Dey and Bloom 2005). Moreover, 5 percent of poor children nationally were described by their parents as having only fair or poor

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health, compared to less than 1 percent of children who were not poor (and 1.7 percent of children overall). Poor children continue to suffer from a variety of ailments at higher rates than more affluent children. For example, they are over three times more likely to be iron deficient; 1.5 times more likely to have frequent diarrhea or colitis; twice as likely to suffer from severe asthma; and 1.5 times more likely to suffer partial or complete blindness or deafness (Children’s Defense Fund 1994). Poverty puts the health of children at risk in many ways, including increasing the frequency of low-birth-weight babies and poor nutrition, which in turn increases their likelihood of chronic and acute illness. Children living in poverty have a higher risk of infant mortality because of biological factors such as low birth weight or birth defects and environmental hazards during the fragile first year of life. Also, poor mothers often receive inadequate prenatal care. Poor children are also isolated from the nonpoor in their neighborhoods and communities and live in inner cities where violence, crime, truancy, loitering, and a sense of despair predominate (Kotlowitz 1992; Massey and Denton 1993; O’Hare 1995; Ross 2000; Selis 2003). Between 1979 and 2002, almost 96,000 American children and teens have been killed, and about 480,000 wounded by guns (Children’s Defense Fund 2005). Homicide is the third leading cause of death among children ages one to four, the fifth leading cause among children aged five to fourteen years, and the second leading cause among teenagers aged fifteen to nineteen years. It is the leading cause of death among young blacks aged fifteen to thirty-four. Many children in the families we interviewed suffered from health problems, some quite serious. In particular, serious viral and respiratory infections were common in this population, as were asthma, ADHD, and various other learning disabilities. Children, we were told, also suffered dental caries at a very high rate. Initially, respondents were asked to rate the general health of each of their children, ranging from poor to excellent. The results are reported in table 2.4. Fifteen percent of respondents at the first telephone survey, and 17 percent at the second reported having at least one child in only fair or poor health. Nationally, only 1.7 percent of children under age eighteen are evaluated by their parents to be in fair or poor health (Dey and Bloom 2005). Thus, our sample of children of TANF leavers reports poorer health than other children their age. Additionally, 12 percent of adult respondents in the first survey and 15 percent in the second told us that at least one of their children had health that

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Table 2.4 Children’s Health (percentages)

Respondent has at least one child with poor or fair health Number of children with poor or fair health (mean) Average general health scores for children (1–5) (mean)

Wave 1

Wave 2

15.4

16.5

0.2

0.2

4.0

4.0

Respondent has at least one child with worse health than peers

12.1

15.0

Has at least one child who needs more health care than peers

23.8

23.5

is worse than their peers, and nearly one-quarter of respondents reported having at least one child who needs more health care than his peers. Our data indicated no significant changes in the children’s health status over the year. Our qualitative interviews revealed the depth of children’s health issues that the families in our study faced. In particular, we frequently heard stories of viral and ear infections, asthma, dental concerns, and mental health and learning problems. Viral and Ear Infections

Viral infections are familiar terrain for most parents of infants and young children. It is therefore not surprising that over half of our qualitative respondents told stories about these common infections. One of the most common conditions reported in our qualitative interviews was otitis media (OM), or middleear infection. Ear infection is the number one condition for which sick children visit physicians; OM can be serious because it is also the most common cause of hearing loss in children (American Academy of Otolaryngology—Head and Neck Surgery Foundation 2005). Treatment options for recurrent OM include prophylactic antibiotics and placement of ear tubes, which are necessary if the child is to avoid permanent hearing loss. Jeanne reported that all three of her children suffer recurrent ear infections: “Richard and Becky have both had tubes put in their ears. Christy is a candidate for that coming up because she keeps getting ear infections about one every four to six months. . . . she’s old enough now that her ears should have opened up.” Parents with reliable insurance coverage may take a relatively common childhood condition like recurrent OM in stride. Yet without such coverage, many parents might choose to forgo treatment. This condition can escalate and

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cause lifelong damage to hearing. Hearing loss may subsequently lead to speech and language problems. For these reasons it is particularly important to continue providing access to health care for these vulnerable patients under the age of three. Another alarming finding was the number of children in our population who had contracted severe cases of Respiratory Syncytial Virus (RSV). RSV is the most common cause of bronchiolitis and pneumonia in children under twelve months (Centers for Disease Control 2004). RSV accounts for more than 100,000 hospitalizations and 4,500 deaths of infants and children each year. Although most children show serologic evidence of RSV by the age of two, only some children develop severe cases (Centers for Disease Control 2004). Children who contract a severe case of RSV are more likely to develop asthma (Pullan and Hey 1982), and many of the stories we heard in our qualitative interviews illustrated this theme. Rose’s son is an example of a typical RSV experience: “When he was five-and-a-half months he was hospitalized for two days ’cause he couldn’t breathe. It was very scary. He was diagnosed with RSV and that’s what caused his asthma.” Rose told us of how suddenly her son’s respiratory infection turned life threatening. This was also a common element of RSV cases among our respondents’ children: “So, now with this RSV, I think somebody else told me, it’s the kind of thing where like you get a cold, but then your cold really turns into, it can either be pneumonia, or . . . can sort of activate your asthma and things like that, right? With him, it actually partially collapsed one of his lungs. And he actually didn’t have any cold symptoms before it happened. It was instantaneous.” Penny’s story of pregnancy complicated by preeclampsia was mentioned in our discussion of women’s reproductive health. Her second son was born four weeks premature due to these complications. Healthy at birth, he went on to contract a severe case of RSV at nine days old. Penny told us how her infant was hospitalized and put on a respirator because he suddenly stopped breathing: “That was scary. That was real scary, you know, when I called and found out he quit breathing and just going in and [they] have him on a respirator—breathing machine. And then . . . he had to be on that for about twentythree hours. He was so sick . . . and the doctor said they’re really concerned because he stopped breathing, [they were worried that he may have] lost any brain function.” Julie is a young mother of two living in a metropolitan region. Her youngest son had a severe case of RSV at one month old and was hospitalized. One night, he would not wake up and Julie called her pediatrician who suggested she take

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her son to the hospital immediately where he was admitted and treated for two weeks. Because of this RSV infection, he is now more susceptible to respiratory infections and, like Rose’s son, has developed asthma. When he gets a cold it goes straight to his lungs and you gotta be on top of it really good; I have to like, every time I know he’s gettin’ a cold I call his doctor and take him in right away ’cause . . . once you get RSV you can get it very often. [INTERVIEWER: And how do they treat it?] Steroids; put ’em on steroids and asthma medication, and . . . all of that good stuff. Well, it kinda triggers it in a way. The asthma, once you get a cold . . . if you have asthma, it starts closing your breathe-way, and you know, it kinda gets tight and you have to, like, use your inhaler and your steroids to make it open. So, and the steroids the only thing that have ever got him outta that so far. And they don’t like giving those to kids because I mean steroids are really not good for them. Childhood Asthma

The prevalence of asthma in the United States is rising at alarming rates. Currently, asthma is the most common chronic disease of childhood, affecting about 13 percent of children under the age of eighteen (Dey and Bloom 2005). It is the third-ranking cause of hospitalization among children, and is the number one cause of school absenteeism, accounting for 14 million total missed days of school (Schiller, Adams, and Coriaty Nelson 2005; U.S. Department of Education 2001). National data indicate that children in poor families are more likely to have been diagnosed with asthma (15 percent) than children in nonpoor families (12 percent) (Dey and Bloom 2005). We found that asthma was far more prevalent among our families leaving welfare than is the case among the general population of families nationally. About one-fifth of our respondents reported that at least one child living in their household was affected by asthma. Although the severity of individual cases varied widely, the quality of life for these respondents and their children was often compromised. Eric, the son of an asthmatic respondent, has had myriad respiratory problems. When asked generally about his health, his mother, Heather, responded, “His is not good. It has never been. He was born with a collapsed lung, he’s had asthma all his life and he’s constantly . . . in fact, I’ve taken him to the doctor this week and he was in about two weeks ago. Just anything that comes along, he ends up with.”

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Both of Chelsea’s children have asthma, and her three-year-old daughter’s case is especially severe. Her daughter was dependent on a nebulizer and Albuterol to keep her out of the hospital. Chelsea explained, “She’s got really bad asthma and has had it ever since she was born, and she’s been in and out of the hospital. . . . Her asthma kicked in real bad, and she got pneumonia on top of it, so it’s like five times worse than what it was, and then they put her in the hospital for three days. She was three months old at the time.” Although she wasn’t hospitalized between the two interviews, Chelsea’s daughter did not improve over the next year, and she was using the nebulizer five to six times a day. Chelsea also discussed the need to train the preschool teacher about how to use the machine. Environmental triggers have been linked to severity of asthma symptoms. Many asthmatics are particularly sensitive to dust mites, molds, environmental tobacco smoke, and other common household allergens. Overcrowding and other quality-of-housing issues play a considerable role in the amount of and exposure to asthma triggers. Therefore, it is not surprising that we heard stories like that of Guiliana, a twenty-eight-year-old Hispanic woman living with her husband and two children. When we interviewed her the previous winter, both children had been down with recurrent bouts of illness, as Guiliana recounted: Well, I think, it was because at that time it was snowing, and freezing, and I had just started to work, barely. . . . So . . . I worked in the afternoon, Lorenzo stayed with the boy, I took the girl to someone else to watch because she was smaller and it was difficult for him. So I took her out in the afternoon when it was raining, and then I went to pick her up at night, my car didn’t have heat, she got the flu and then bronchitis and she got like asthma. But also the problem was that she didn’t get better, or it didn’t get under control very quickly because in my apartment, it was humid . . . there was a leak in the room where we slept, and the bedroom is close to the bathroom, so there was also a leak in the bathroom from the apartment upstairs. And the person who lived upstairs went to the bathroom to get high . . . and all of the smoke came down through this hole. Well, the manager made a hole to check the water, to see where the leak was, and all the smoke came down. So all this smoke got stuck in my room, so my son also, that’s why he had problems with asthma, because every night they inhaled this smoke, and the humidity of the room which had a lot of leaks, so, that is why it lasted so long, like a month and a half, sick.

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Guiliana’s children were experiencing so much respiratory difficulty that their pediatrician offered to write a letter to her apartment manager. The physician believed that there was a medical necessity to make the household repairs. “The doctor even told me that she would write a letter to the manager to tell him it was, that because of the way we lived the kids didn’t get well quickly.” But Guiliana was fearful of angering her apartment manager as her earlier reporting of the leaks had upset him. She told us that she eventually quit her job to stay home with her sick children: “And so I told the doctor that it was okay, that we were probably going to move, that that would be better, and then time passed and then . . . the weather started changing, and then I quit. I stopped going to work. I stayed home to take care of the kids. I was just taking them in for a check-up every two weeks, or later every month when they started to get better. And that’s all, and now they are, since summer started they are doing well. ” Guiliana and her family did move to a new apartment, and at her second interview she reported that her children’s health was much improved. Much of the policy debate regarding welfare assumes that if middle-income mothers are able to work while caring for their children’s health and well-being, then mothers leaving welfare for work should be able to strike this balance as well. However, research shows that welfare leavers are more likely than those who have never received welfare to be caring for at least one child with a chronic condition, which necessarily impedes their ability to work. Additionally, adults leaving welfare for work are often relegated to poor-paying jobs that do not provide sick time or paid leave (Heymann and Earle 1999). This dynamic results in both parent and child falling farther behind in their quest to be self-sufficient. Children’s Dental Health

In 2003, 3.7 million American children between the ages of two and seventeen (6 percent) had unmet dental needs because their families could not afford care (Centers for Disease Control 2004; Dey and Bloom 2005). Nineteen percent of uninsured children had untreated dental problems, compared to 3 percent of children with private health insurance, and 7 percent of children with Medicaid (Dey and Bloom 2005). A primary culprit is Early Childhood Caries (ECC), often caused by poor eating habits, which may then develop into further poor eating habits, speech problems, and low self-esteem, as well as being a distraction in playing and learning activities (U.S. General Accounting Office 2000). ECC is a preventable condition that has garnered a great deal of attention from public health professionals lately, especially as it pertains to health disparities

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across income strata or insurance status. Our respondents’ experiences reflected these trends. Shelly’s daughter, Brianna, is an example of a young child with significant dental issues. When we met her, Brianna suffered from severe tooth decay and had three of her front four teeth extracted. ECC that is caught and treated early allows the child to keep primary teeth until they are replaced with permanent teeth, but Brianna’s condition had progressed beyond this point. Unfortunately, many OHP dental providers refuse to treat children under the age of three or four years, which is when early intervention is most likely to be effective. Faith is an older woman living in a small town in eastern Oregon, charged with caring for her two grandsons. At the time of the first interview, Faith’s fouryear-old grandson was suffering from severe tooth decay. Their story is typical of those of other respondents: “Well, I think they’re pretty healthy, except for Jared right now. I’m running him back and forth to the dentist because he has some really bad cavities that, I guess, have been going on for a while now. His mom said that she thought he was too young to go to the dentist.” Faith told us that her grandson was scheduled for surgery and that he was being treated with antibiotics and topical and oral pain medication: “They’ll put him to sleep and take care of all his teeth so it won’t be a bad experience for him.” She went on to tell us how she and the little boy were coping with his condition in the meantime: I’ve been making him brush morning and at night before he go to bed. And even if he gets a toothache, the first thing we do is brush them and then put the numbing stuff on there and then take the pain medicine. So you can see the antibiotics is doing really good. Because he don’t have as many toothaches as he was having at first. It was just . . . it made me feel so bad ‘cause he’s only four. You know, and he was in so much pain. So, thank God that will be taken care of on the twenty-third of next month. So that’s the soonest they can get to him, but it was too bad for my dentist here in [Location A] to do. So he had to go to [Location B] to see that specialist. Mental Health, ADHD, and Learning Disabilities

Children are not spared the effects of mental and learning disorders. Nationally almost 5 million children between the ages of three and seventeen years (8 percent) have a learning disability, more commonly occurring among boys

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than girls (Dey and Bloom 2005). Additionally, almost 4 million children have Attention Deficit Hyperactivity Disorder (ADHD), with boys more than twice as likely to have ADHD as girls. Learning disabilities of all types are more common in low-income families than in high-income families (Dey and Bloom 2005). The children of our respondents suffer from a wide variety of learning and behavioral problems. In-depth interviews revealed childhood conditions including depression, bipolar disorder, Tourette’s Syndrome, ADHD, Attention Deficit Disorder (ADD), and Oppositional Defiant Disorder (ODD). Nowhere is the heartache and devastation of childhood mental illness better illustrated than in the case of Cindy and her two children. For her own part, Cindy suffers from bipolar disorder and recurrent vaginal cancer. She said that when she was diagnosed with cancer two years prior to her first interview, her then-seven-year-old daughter began having severe emotional problems: “There’s lots of things that have affected her, and me having cancer in ’97 is what set it off, so she’s been, we’ve been trying to get her help for a long time and it’s just the last two years she’s gotten help.” Cindy’s daughter was eventually placed in a residential treatment facility where she remained as a ward of the state for over two years. Cindy told us that she tried to care for her daughter at home until the situation became unbearable: “She was trying to stab her brother with knives, and me, and really hurting him and stuff like that, so when she gets very upset he doesn’t trust her. . . . I literally couldn’t get her in the shower, I couldn’t get her to go to school, I could not get her to do anything, and she was screaming at the top of her lungs, she would scream out the window that she was being killed or that she was going to kill herself. Oh, it was a nightmare. It was this constant, totally out of control crazy person here all the time.” Cindy’s ten-year-old son was also put in residential treatment between the first and second interviews. At the time of the second interview we learned that Cindy had lost her apartment during an extended hypomanic paranoid episode. It was during this hypomanic phase that her son asked to be put in residential treatment. He was in a therapeutic foster home at the time of Cindy’s second interview. We also found that our families commonly reported ADHD, and their children seem to suffer this condition at much higher rates than in the general population nationally. Many of our respondents’ children suffered from more than one condition, echoing a national trend. Co-morbidity is particularly prevalent for those diagnosed with ADHD and includes conditions such as ODD, anxiety, and depression (Watkins 2003).

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Emma is a white, single mother of three young children. Her oldest child is eight years old and receives disability benefits due to severe ADHD and ODD. Here, Emma does her best to describe her daughter’s condition: “Basically, it doesn’t matter who you are, if you’re a police officer or president of the United States, she’s got in her head one way and you try to tell her something else, she’s not going to listen. . . . It’s something in the brain that it, she does things her own way. She’s a loner and doesn’t have very many friends at school. She’s actually just got one that I’m pretty excited about ’cause she hasn’t had friends. When she was seven years she actually attacked a police officer and attacked myself.” Emma cites the formulary restrictions of OHP for her daughter’s outburst: “The doctors can’t decide on their own. They have to start with Ritalin. And it was the Ritalin that made her angry and attack me, the police officer, and a bunch of neighbors that came out to help. I took her off of it that night; I’m like, ‘She’s not getting no more.’ I took her back to the doctors and the doctor referred her to a psychiatrist. And then so we tried different meds, and found Aderol worked best.” Emma had to advocate staunchly for her daughter when they transferred care from the psychiatrist to her primary care physician. Emma said that the physician insisted on changing her medications, but after five days he acquiesced and prescribed the girl with Aderol: “So like when I transferred down here and got her primary care physician, the doctor down here wanted to take her off the Aderol that had been working and try her on something else so that, his words were so that the Oregon Health Plan could see that he was trying a less expensive drug.” The effort of this physician to prescribe a less expensive medication for Emma’s daughter—though frustrating for Emma—is not surprising. As prescription drug expenditures consume an increasingly large portion of Medicaid budgets, states in their current fiscal environment are anxious to control drug costs without endangering enrollee health. Federal regulations often limit states’ efforts to contain costs, but the provision of prescription drug benefits is an optional service in all fifty states. As a result, pharmaceutical spending is often a target of macro budget-balancing efforts that can have direct and heartbreaking impacts, such as in Emma’s case. Willesha has three children diagnosed with ADHD. At the time of the first interview, all of her children were on medications for their conditions. Willesha’s oldest son was seventeen at the time and being treated for ODD and depression along with his ADHD. Her fifteen-year-old daughter and eleven-year-old

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son were also on medication for ADHD. By the time of the second interview her two oldest children had ceased taking their medications due to unpleasant side effects. Willesha was concerned about her daughter, in particular that “her grades were starting to slip,” but she felt she had no recourse with her now sixteen-year-old, strong-willed child. When asked about her daughter this is how Willesha answered: She’s quit taking her meds. She’s sixteen and she refuses to take them. I said okay, as long as you can manage yourself, which she doesn’t always do. But I can’t force her. I’d have to hold her down to literally force her to take it. Her grades are starting to slip but she’s starting to see she needs to take it. [INTERVIEWER: Why did she stop taking it? What was her reasoning? ] Made her feel funny, she didn’t like it, she got labels, she said, even though nobody else knew she was on it. It takes away from her unique personality, what a sixteen-year-old girl, who knows. She’s a different one.

Willesha’s oldest son had turned eighteen and also refused to take his medication: John is not taking his, either. He’s eighteen now. He feels that the ADHD medicine he was on stunted his growth. He’s five foot seven, he’s always been mad at them for putting him on it. He’s the one with the ODD as well, so he was put on antidepressants about a year ago. He refuses to take those. With him I think it’s a control issue, asserting his independence; he’s eighteen now and when he deals with the doctor I say fine, if you’re going to do this you need to call the doctor, you need to make the appointments, you need to get yourself there unless I’m going out that way. But if you’re going to do this, you need to manage your own health care, and it’s about time he does that anyway.

These survey data and interviews reveal that families leaving TANF are exceedingly at risk with respect to their health. Our data cannot answer whether our respondents’ poor health is the cause of their poverty, or whether their poverty is the cause of their poor health, as the two are likely interrelated. Nonetheless, the daily stressors of surviving at or near poverty may exacerbate their health conditions. Questions such as: “Will I have enough money to feed my kids today?” or “What will I do if I have a medical emergency?” are always present for people struggling to survive day to day. This type of chronic daily

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stress has been associated with everything from asthma to obesity. It is of particular interest that the health of adults leaving TANF for work deteriorated between the initial interview, when OHP enrollment was considered automatic, and the second interview, when enrollment was not guaranteed. Given their poor health, we wondered if families could get the health care that they need. What happened to the health insurance status of respondents and their children after they left welfare for work, and their transitional benefits expired?

Chapter 3

Insurance Coverage

Vicky had been difficult to reach for her interview. It was clear she was a very busy woman and that time given to us for an interview meant time away from more important and pressing aspects of her life. Despite this, we made arrangements to meet on one of her days off from work on a blistering hot July afternoon. Her small, ocean-colored ranch house was located in a Portland metropolitan neighborhood that, despite its pleasant appearance, had long been known for its share of crime and depressed property values. Vicky is a thirty-nine-year-old African American mother of three. When she greeted us at her front door for her first interview, we were immediately drawn to her hospitable face and warm brown eyes. The contents of her home had a very “ordered” appearance, and as we sat down in her family’s den, she continued to fold a basket of laundry, a job we had obviously interrupted. The pride she felt in her children was immediately apparent: two walls of her living area were literally covered with photos of them. The elaborate display had been carefully and thoughtfully assembled to accommodate the varying sizes and shapes of the frames. Portland had been experiencing a heat wave and Vicky’s home had been taken captive by it. Thankfully, a large floor fan enlivened the hot, heavy air, though it forced us to talk a bit louder than we would have normally. As we became acquainted, Vicky’s thorough and talkative nature led us on a series of discoveries about her life. In her unhesitating manner, Vicky made it known that she highly valued her family’s well-being and the protection of it through health insurance.

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Vicky and her children were covered by OHP and she was extremely grateful for the safety net that it provided. Eight-month-old David was “born perfect” and was in good health, though she felt that he experienced more colds than other children his age. Connie, a beautiful two-year-old who waddled into the den with her brother, had “the better time with health.” Eight-year-old Justin, on the other hand, had some significant health issues, including foot surgeries and recurrent respiratory infections. Additionally, Vicky had experienced her own health concerns. For instance, she said that while pregnant with David, she was hospitalized for high blood pressure: “I was just walking one day and then I kinda held up both hands and then felt a little dizzy . . . push myself to the doctor and sure enough when I got in there, I mean they hospitalized me right away.” Fortunately, she had health insurance coverage at the time, but another time, during a bout with an upper respiratory infection, her insurance had lapsed. Like other families we met, her insurance status was constantly changing. One month her entire family might be covered, the next month she or the children might be dropped from coverage. During a period of being without insurance, she discovered firsthand how difficult it could be for individuals with little money and no insurance to find health care: My benefits ran out on the Oregon Health Plan. My children had coverage but I did not because it goes according to your income. I had changed jobs and it left me without insurance for a while. . . . I needed to go to the doctor but I didn’t have coverage and so I had to pay myself somebody to do it out of pocket which was really hard to find nowadays. I didn’t realize that, but yeah. [INTERVIEWER: You had to find somebody that would accept cash?] Yeah. [INTERVIEWER: And that was hard?] Yeah, because I didn’t realize it that everything has turned over to the Oregon Health Plan. You know people that used to, like Multnomah County, I used to be able to go up there when there was a lapse in my insurance and see someone but when I called them they said that it would take a while to get because if I didn’t have Oregon Health Plan I would have to wait for an opening. I would have to wait and I wasn’t feeling very well to be waiting around so it was pretty difficult.

Vicky tried desperately to find a medical provider whom she could afford and who would accept her right away. She told us that to her great surprise, she

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finally discovered a small clinic inside a Portland-area grocery store: “They led me to this place that was unbelievable . . . I thought somebody was playing a joke on me! Inside of [discount store] there is a medical clinic.” Vicky may have been surprised at the time, but a growing number of retail health clinics are cropping up in discount retail outlets such as Wal-Mart and Target stores around the country. Though there are concerns about continuity and thoroughness of care, these clinics appear to offer a certain appeal. In a Wall Street Journal online poll, 7 percent of 2,245 sampled adults indicated that they had used a retail clinic’s services. When asked about the experience, the majority were satisfied with the convenience, quality of care, staff qualifications, and cost (Harris Interactive 2005). When we talked with Vicky at her second interview, we discovered that these respiratory infections had continued to be a chronic problem for her: This year was the worst though, because [in the past] I’ve never lost my hearing from it. I was deaf for about two weeks. I couldn’t hear anything. [INTERVIEWER]: Did that affect your work? Yeah, well, it did and it didn’t. It did affect my work because I had to have the people keep repeating what they were saying to me, but thank God I work in a small office and everybody understood that I was sick and that it made my equilibrium go off balance. And then I start throwing up on the job and they said, “Oh please go home, oh please.”

Vicky’s children have many health concerns that require attention. Justin, her eight-year-old, has endured chronic foot and leg pain since he was an infant. Vicky has taken him to a number of doctors to try to get to the root of the problem, without success. She told us, “So I brought him back to the doctor and said something’s just not right, you know. ‘Oh it’s growing pains.’ And it’s not growing pains. Growing pains don’t go from the time you’re a baby till this period.” Because of the health needs of her family, it is not hard to imagine why Vicky feels strongly about maintaining health insurance coverage. When we talked with her at the second interview, we discovered that the family’s constellation of insurance had changed once again. Although Vicky received coverage through her employer, it did not extend to her children. This posed a dilemma for her: should she look for a new job that offers benefits to her entire family or maintain her work record with a good employer that at least offers benefits to her? She is hesitant to leave the small nonprofit agency because the position brought her “a newfound freedom” and “allowed her to flourish” because of the respect she receives from her coworkers and supervisor.

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Vicky’s children spent a portion of time without insurance coverage. She blames herself, as she did not submit additional paperwork for her children to maintain OHP coverage when she became covered by her employer, leading to a lapse in their coverage. However, Vicky was not aware that she needed to file a new set of paperwork for their coverage when she lost her OHP coverage. She thought their paperwork was up-to-date, having submitted it only two months prior to their lapse. The sheer paperwork she encounters can be overwhelming. She does not have a caseworker to help her through the maze of tasks to retain coverage for her children, so unfortunately her family fell through the cracks. As Vicky recounted, “I don’t have a caseworker, so I don’t have anybody to talk with. I just have to go off my own understanding, and I never did it like that. I didn’t understand that [the need for additional forms] . . . but in the meantime they [OHP] lapsed their insurance.” Later, when she recognized her error and filed the additional necessary paperwork, she discovered that her income barely qualified her children for OHP/ Medicaid as it was slightly under the eligibility cut-off. She was therefore worried about an upcoming pay raise from her employer. In Oregon, families are eligible for OHP/Medicaid if they are at 100 percent of the federal poverty line, while pregnant women qualify at 185 percent of the poverty line. Additionally, there are provisions for families with children of certain ages, and this allowed Vicky to maintain coverage for her children, though her income puts her just over the poverty line of $19,971 for a family of four (DeNavas-Walt, Proctor, and Lee 2006). In many ways Vicky is a success story. She works at a job she genuinely likes, and her employer provides her with much-needed health insurance. However, her employer does not provide insurance for her three children who also need coverage for their many health issues, both routine and extraordinary. Some have suggested that welfare caseloads would substantially decrease if employment guaranteed health insurance for families (Berrick 1995; Seccombe 2007a). Vicky’s case provides us with an example of the quandary facing many families leaving welfare; Americans largely subscribe to the notion that people must work to be responsible citizens. At the same time, employer-sponsored health insurance has been declining significantly; it is less likely to cover dependents; and the costs of premiums, copayments, and deductibles are on the rise. Low-wage workers are hit the hardest and have the least cushion to soften the blows. Some states have attempted to tackle this issue by proposing “pay or play” bills, which require employers to either pay for or provide health insurance

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to their workers. In 2005, twelve states introduced such bills, but Hawaii remains the only state with an employer mandate in effect. With the passage of the Health Insurance Act of 2003, California would have become the second state to implement such legislation, affecting businesses with more than fifty employees. However, voters rejected the proposal in 2004. Leaving TANF for employment may affect access to health care in several ways, most notably by affecting a family’s health insurance. Families lose their transitional medical benefits after one year unless, of course, they continue to qualify for assistance and fill out the requisite paperwork. In our study, when OHP/Medicaid benefits expired between the first and second interviews, we wanted to know what happened to families’ insurance status. To what extent do families become uninsured over the course of the year after the transitional benefits expire? What is the source and extent of medical and dental insurance coverage among those with coverage, and how satisfied are families with their coverage? Becoming Uninsured

At the first interview, when respondents had been off TANF for six to seven months, virtually all were considered eligible to receive OHP/Medicaid. A year of health insurance coverage is provided to families leaving welfare for work to help them in their transition to employment. However, health insurance is not automatic; a person could choose another type of insurance, such as from an employer, if preferred. Nonetheless, regardless of the source, it was expected that virtually all respondents would be insured at the first survey. To our surprise, about 11 percent of adults were completely uninsured when initially interviewed, and 7 percent of respondents claimed that they had at least one child without insurance. When we discovered this finding midway through our survey, we paused to ask why so many respondents were uninsured, and in particular, why OHP/Medicaid did not cover them at a time when it was supposed to be available to them. The reasons varied, but were primarily a lack of information, misunderstanding, neglect, or the inability to complete or return the proper paperwork in a timely fashion. Although medical benefits are theoretically automatic at our first interview, important forms must be completed and, through human error, a significant number of families lost their OHP/Medicaid coverage and became uninsured. What happened to respondents over the course of the year between interviews? Figure 3.1 reveals a steady decline in OHP coverage, month by month. Because most employers did not insure their workers, by the second interview,

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about eighteen months after leaving TANF for work, 40 percent of the adults in our study were completely uninsured, which is almost twice the national average among adults aged 18–44 (DeNavas-Walt, Proctor, and Lee 2006; Schiller, Adams, and Coriaty Nelson 2005). Additionally, their likelihood of being uninsured was 20 percent higher than the rate for persons living in poverty generally. As our interviews revealed, many respondents were not particularly savvy about how to obtain coverage, how to find jobs that offered coverage, and did not earn enough to purchase it privately; therefore, they were at particular risk for being uninsured. When uninsured respondents were asked at the second interview why OHP/Medicaid did not cover them, they most often cited financial considerations or problems. Nearly one-half claimed that they made too much money or that they owed money to OHP. However, a significant number, like Vicky, also cited paperwork confusion and misjudgments. Some respondents were unaware of rules and regulations that required them to complete paperwork, they completed it incorrectly, they did not complete it in the necessary time frame, or they did not have transportation or child care to be able to turn in their paperwork. Given the high degree of stress in their lives, many respondents claimed that they simply forgot, or were unable to complete the necessary forms. As the opening vignette reveals, Vicky offers an example of how lack of information or understanding can lead directly to lapses in insurance coverage.

80% 70% 60%

OHP

50% 40%

Employer Insurance

30%

Uninsured 20% 10% 0% on M

th

1

t on M

h

2 on M

th

3 on M

th

4

t on M

h

5 on M

th

6 on M

th

7

t on M

h

8 on M

th

9 on M

th

10

t on M

h

11 on M

th

12

Figure 3.1 Insurance trends over year following Wave 1 interview.

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As previously noted, the lack of health insurance is a serious and disturbing social problem in the United States because it is one of the primary mechanisms of accessing health care services. Yet nearly 47 million Americans, or 16 percent of the population, had no health insurance in 2005 (DeNavas-Walt, Proctor, and Lee 2006). This represents a significant increase from 39 million in 2000. Millions more are “underinsured”—their high deductibles or copayments render their insurance virtually useless except in the most catastrophic conditions. The ability to obtain health care is fundamental to the security, stability, and well-being of families. Uninsured families, or even one uninsured member of a family, risk not only their health but also the families’ entire economic viability. Not surprisingly, the Institute of Medicine refers to health insurance as a “family matter” (Institute of Medicine 2002, p. 1392). Paying for health insurance can cause families to spiral down into poverty, and it now is a leading cause of worker strikes. Families know that without health insurance they may not be able to get the health care they need. Children’s Lack of Coverage

Table 3.1 shows that the children in our study were also more likely to be uninsured by the second survey. The likelihood of having at least one dependent child uninsured increased more than threefold, from 7 percent to nearly 22 percent. This is significantly higher than the trends reported in national data. According to the U.S. Census, about 11 percent of children (8.3 million) nationally were without health insurance from any source in 2005, representing an increase in the past several years (DeNavas-Walt, Proctor, and Lee 2006). Among poor children the figure is even higher, at about 16 percent, but still far below our findings (Cohen and Bloom 2005). This suggests that children whose parents leave TANF for work are more likely to have bouts of being uninsured than are all other children, wealthy or poor. Moreover, we found that the average number of uninsured children in each family also increased significantly. We see nothing particular in Oregon culture or demographics that would make our findings unique; we believe that, in general, TANF leavers and their children have little experience navigating our unsystematic health care system, and are therefore more likely to fall victim to its inadequacies. Nonetheless, the high number of children without insurance is somewhat surprising in light of the State Children’s Health Insurance Program (SCHIP), a federal program that was enacted to help children in working families with incomes too high to qualify for Medicaid, but too low to afford private family

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coverage (Children’s Defense Fund 2004). As part of the Balanced Budget Act of 1997, Congress created SCHIP as a federal/state partnership, similar to Medicaid, with the goal of expanding health insurance to children. SCHIP is the single largest expansion of health insurance coverage for children since the initiation of Medicaid in the mid-1960s. While eligibility criteria differ somewhat by state, the federal target is one who resides in a family with an income below 200 percent of the federal poverty level or whose family has an income 50 percent higher than the state’s Medicaid eligibility threshold (Centers for Medicare & Medicaid Services 2005). Generally, most uninsured children in families of four who earned up to $37,000 a year in 2005 would generally qualify, with relatively modest copayments and deductibles. More than half of uninsured children appear eligible for Medicaid or SCHIP (Dubay, Hill, and Kenney 2002). Yet despite this program, millions of needy families remain ineligible, do not know about SCHIP, or otherwise do not enroll. In response to this, some states have taken matters into their own hands by applying for Medicaid waivers and expanding eligibility requirements. For example, Illinois governor Blagojevich signed the “Covering All Kids Health Insurance Act,” which will make insurance coverage available to all uninsured children, with premiums charged on a sliding scale adjusted by income. In the case of a family of four earning $40,000 to $59,999, the fee would be about $40 a month per child. What would it cost to cover all the uninsured adults and children in America? Economists from the Urban Institute estimate that it would cost about $34 billion to $68 billion a year to provide universal coverage for all Americans (in 2001 dollars). While that sounds like a daunting amount of money, it would only increase health spending by 3 to 6 percent and would raise the percentage of the GDP spent on health care by less than one percentage point (Hadley and Holahan 2003). To put these dollars in the context of the federal budget, economists Jack Hadley and John Holahan write: “These benchmark cost estimates should reassure policymakers that the cost of additional care that would be used by the newly insured, in spite of its large absolute value, is much lower than the expected average annual revenue loss of almost $170 billion from federal tax cuts enacted since 2001” (Hadley and Holahan 2003). Residential Differences

We anticipated that residents of rural areas would be less likely to have insurance coverage, especially employer-sponsored insurance coverage, than their metropolitan counterparts because of the nature of available jobs. At the time of this study in 2002–2003, Oregon had the highest unemployment rate in

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Table 3.1 The Uninsured (percentages) Wave 1

Wave 2

Total

10.6

40.0

White

6.9

37.3

Black

8.8

33.3

Hispanic

25.2

54.5

Urban

11.2

39.4

Currently uninsured

7.5

43.8

Have at least one child uninsured

Rural

6.7

21.6

Number of uninsured dependents per respondent (mean)

0.11

0.4

Have no dental insurance (only asked at Wave 2) Total

57.1

OHP/Medicaid

33.8

Private insurance source

19.6

Uninsured

98.2

the nation (nearly 8 percent), a factor affecting job options available to the study respondents. Rural regions and small communities face challenges beyond those found in urban areas of Oregon. Jobs are more limited in number and scope; many are dependent upon declining timber or fishing industries; therefore, the unemployment rate is higher, and more people live in poverty (Seccombe et al. 2005a). Surprisingly, no significant differences emerged regarding health insurance coverage despite different job markets in rural and urban areas. Any differences noted were small and not statistically significant. For example, rural residents were only slightly more likely to be uninsured (44 percent versus 39 percent). The lack of significant differences could be an artifact of sampling size or the manner in which rural and urban areas were defined, as rural residents were particularly vocal in describing their limited options for employment and their likelihood of being uninsured. For example, Kristen, who lived in a small, isolated community near the Oregon coast, talked about the difficulty of finding a job that provided health insurance: “Finding quality jobs that will actually benefit you and allow a person going from the job classes and

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TANF to actually be able to fully provide for their families—I think around here that’s really lacking for the job market. There are lots of jobs that will pay $6.50 an hour. That’s what you will always make, and you will not have benefits. That’s what I’ve heard about living out here. And $6.50 an hour is just enough for you not to qualify for TANF or any kind of general benefits.” Racial and Ethnic Differences

Has welfare reform affected the insurance status of families leaving TANF for work differently according to respondents’ race and ethnicity? At the second survey, after transitional OHP/Medicaid benefits expired, 55 percent of Hispanic/Native American adults were uninsured, compared to about a third of whites/Asian/others and a third of African Americans. Hispanics/Native Americans were also more likely than any other group to have children who were uninsured. These mirror national data suggesting that Hispanic groups, Mexican Americans in particular, are least likely to have insurance coverage (DeNavas-Walt, Proctor, and Lee 2006). In our study, many Hispanic respondents were undocumented workers qualifying only for emergency benefits, rather than the full OHP/Medicaid program; therefore, in practical terms they were virtually uninsured. The issue of undocumented workers is a contentious national debate. The flow of workers is well established, but much is illegal under national immigration laws. Estimates from various sources indicate that there were between 11 and 12 million illegal immigrants in the United States in 2006 (Passel 2006). Since 2000, this group has been growing by about 500,000 per year. Fifty-six percent come from Mexico, and another 22 percent come from the rest of Latin America, where they face extreme poverty and limited job prospects in their countries of origin. About half of illegal immigrants are adult males; the remainder are women and children, although two-thirds of the children living in unauthorized families are actually U.S. citizens by birth (amounting to over 3 million children in 2005) (Passel 2006). Nearly half of illegal immigrants entered the country with visas that allowed them to visit the United States for a limited time, but have overstayed. However, more than half entered the country illegally, by hiding in vehicles such as cargo trucks, trekking through the Arizona desert, wading across the Rio Grande, or otherwise eluding the U.S. Border Patrol (Pew Hispanic Center, 22 May 2006). Many do not make it. They are robbed and otherwise taken advantage of by guides, they are discovered by the border patrol at their destination, or they are killed or injured during the journey. Those who do make it

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to the United States find jobs in a variety of occupations, most commonly lowpaying service industries, construction, or agriculture (Passel 2006). The median annual income for a full-time undocumented worker was $23,140 in 2003, compared to $36,784 for a native-born worker (U.S. Census Bureau 2005). Oregon and many other states rely heavily on farm workers to produce labor-intensive crops, and many workers are undocumented Hispanics. Felice, like many other seasonal workers, illustrates the challenges of being illegal, securing year-round employment, and maintaining health care for her family. Yeah, they tell you that there is a possibility that you can get insurance. But, if you don’t work for a whole year, they don’t give it to you. If you work six months, when there is work, when that is over, they make you take time off. Then they let you know when there is work again, then they make you take time off when there isn’t any anymore. So, you can never get insurance through work. That’s why we haven’t ever had any. I mean, people who have a better chance of working all year-round are people who have a work permit. And, if you don’t have a permit, they don’t let you. So, in those jobs, the people who have the possibility are those who are legal. But, if you aren’t legal, you don’t have a lot of opportunity for work . . . because they want you to change your security number every year, because it isn’t good, and they don’t want to get in trouble with the law, and so every year you have to change your social security number. And if you don’t change it, they make you take time off and then they don’t rehire you. Consequences of Being Uninsured

Our qualitative interviews provide an important perspective on what happens to families when they lose their health insurance. Destiny, who is a mother of two daughters and lives in a rural area, lost health insurance coverage and faced significant medical consequences. She has a serious cardiac condition that requires medication to maintain a steady heart rhythm. At the first interview Destiny was being treated by a specialist under her OHP/Medicaid coverage. She was closely monitored and her medication was adjusted as needed to keep her heartbeat steady. She remarried between her first and second interviews and lost coverage due to her new husband’s previously missed premium payments. OHP requires a mandatory six-month lockout of benefits if recipients fall behind in their monthly premiums. In this case, Destiny was penalized for payments missed by another individual. As a result, Destiny has been forced

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to suspend ongoing medical care for her potentially life-threatening condition. Even though she knew the danger in forgoing her medication, Destiny clearly stated that she had no other choice. She told us how, as a result, she ended up in the emergency room with a dangerous episode of arrhythmia: “I ended up in the hospital because of not being on the heart medicine. I had an attack and my heart rate was 170 and they had to give me a shot that went from 170 to 64 to 83 in like thirty seconds. I mean, they were standing over me with paddles and everything in case it didn’t go back up to normal and stuff, and so that was $2,000 for four hours in the emergency room and so we’re havin’ to try to come up with that now, but I don’t understand why it would affect me on something that was his before we were married.” At the time of the second interview, Destiny still had some heart medication left over from her trip to the emergency room to sustain her for a short while. Unfortunately, there seems to be no end in sight to this kind of patchwork treatment of her condition as she and her husband would not be able to become eligible for OHP/Medicaid again until her husband is able to pay his past-due premiums. Now they have the added financial burden of an expensive hospital visit to contend with. Likewise, Willesha suffers from a hereditary chromosomal condition called Turner’s syndrome. Complications of Turner’s syndrome include ovarian, heart, kidney, and thyroid problems. Her condition requires regular monitoring, but when we conducted her second interview, we learned that Willesha had been unable to maintain her OHP coverage: “When I first got off of assistance I had insurance for six months and it continued because I wasn’t getting the hours. I wasn’t making enough money and my husband and I were split. He wasn’t paying any support. I couldn’t afford [OHP]. It was $18 a month for the benefits so when I went to renew the second six months, because I owed money I didn’t get the insurance either, but I didn’t make enough money, but I didn’t have the $142 that I owed.” Willesha’s condition has caused her to develop a painful gynecologic condition that further exacerbates her Irritable Bowel Syndrome (IBS). But because she has no insurance she is unable to receive necessary treatments: “Once a month it really hurts, and that triggers the IBS. I have missed work on occasion because of that.” Her story is another example of health problems snowballing and becoming exacerbated by forgoing treatment: “I don’t get my heart checked like I’m supposed to. They want me doing stress tests and stuff. There’s a lot of things I need to be seen for but I can’t. I can’t afford it.” It is indeed disturbing that in cases like Willesha’s, the welfare to work program causes individuals to

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lose their insurance, forces them to forgo treatment, and thus they experience an increase in symptoms that interferes with their ability to work. We also met Susan, the mother of one teenage boy, living in a metropolitan area. She moved to Oregon from Montana after her son was diagnosed with cancer. Like so many other mothers we met, she could not juggle the emotional work associated with caring for a seriously ill child with the demands of a fulltime job. Caring for and nurturing her son caused her to lose the full-time job that provided health benefits for both of them. It is a terrible irony in America that a family that needs health insurance the most is forced to lose it in order to care for an ill family member. In fact, the United States has, by far, the least generous parental leave policy of any developed nation. The Family Medical Leave Act (FMLA), signed by former President Clinton in 1993, requires employers with more than fifty employees to grant twelve weeks of unpaid leave to care for a qualifying relative (e.g., usually defined as immediate family). Employers in smaller firms are not required to offer leaves at all. Many families cannot afford to take unpaid leave. And for families like Susan’s, twelve weeks is insufficient to care for a child with a debilitating illness such as cancer. At the time of her first interview, Susan quietly noted that her own health had suffered as a result of the stress of having a child with a life-threatening disease. In fact, it was difficult to get her to talk about her own health given the magnitude of her son’s illness and her involvement in his daily care. Yet, she was being treated for fibromyalgia, acid reflux, and Type II Diabetes. During this interview she said that mental and emotional stresses are especially troublesome for Type II diabetics as distress has a negative impact on their blood glucose levels. Medical management becomes even more imperative for these individuals and it is a sad commentary on the American health care system that they lose their insurance at the very time they need it most. As a result, families are forced to pay exorbitant health care expenses out of pocket to care for themselves and for their sons and daughters. In addition, Susan’s marriage ended in divorce during her child’s illness and she moved to a new state—Oregon—where the only person she knew was her grown daughter. She had to find work that would help support herself and her child while remaining flexible enough to allow her frequent visits to the hospital for cancer treatments. All the while, she had to ensure that she did not go over the allowable earnings limit that might disqualify her from OHP/Medicaid eligibility. During her initial interview she was well aware of her cutoff date for eligibility. She stated that if she were to lose her OHP/Medicaid she would

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be unable to afford her doctor visits or medications due to the prohibitive cost of each. Susan’s discussion of her medications and their cost is representative of the vast majority of our respondents: They give you one year of medical. So I have until January. I have to take Prevacid, which is $139 approximately. I take Avandia, which is for my diabetes, and it’s a hundred-and-something dollars. I take Zocor to help bring down my cholesterol because of my history. My mother died of heart—related to diabetes. The Zocor is to help keep me healthy. And that is a hundred-and-something dollars. And believe me, if I have no insurance, Zocor is going to go. I’m going to suffer because, Prevacid, I can’t afford it, and I will do Avandia because of the diabetes. Trazodone. That’s for the fibromyalgia. So we’re talking $300–$400 for medicine a month.

Susan understood the system well and had maximized her benefits for as long as possible to attend the needs of her ill child. When asked at the first interview about her future plans for meeting her health care needs if she should lose her OHP/Medicaid, she replied: “There’s just no system to help you with that. You fall through the cracks. You either are on the system or you have nothing.” This poignant comment reminds us that the American health care system is unique because access to health care is not universal. In every other industrialized society health care is a right, not a privilege, and is guaranteed as a right of citizenship. Susan did lose her OHP/Medicaid benefits after her transitional year ended, and at the time of her second interview she had not been seen by a doctor or taken any of her medications in eight months. Prior to losing her benefits, Susan was followed closely by an endocrinologist. She explained, “I was seeing the doctor on average every other month, at least two to three months for sure, that I was on [OHP]. That’s what the doctor felt I needed to be monitored. . . . Anyway, I have not taken any medication for diabetes since January. I don’t know how it is. I have no idea how I’m doing, but I try to be careful and I know the signs of when I don’t feel good because of it. I’m in a danger zone . . . I have always controlled it. I was taking medicine for all of this time; I was taking Avandia when I had insurance.” People like Susan with uncontrolled Type II diabetes are at higher risk for developing all of the same complications of Type I diabetes including neuropathy, retinopathy, heart failure, stroke, and renal disease. It was clear from Susan’s interview that she was aware of these threats to her health but that she had no other options due to her uninsured status. Susan said that since losing her

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OHP/Medicaid benefits, she has been taking only an over-the-counter multivitamin and mineral supplement that is marketed for diabetics: “There is a pack that I have been taking, I’m out of it right now or I’d show it to you; it’s called Health Pack for Diabetics. It has amino acids and vitamins, different kinds of things in it, calcium. I take calcium tablets because the doctor told me I should, and I also take one aspirin a day because of my diabetes history and my mother died of heart disease, related to diabetes, so she said take one aspirin a day for my health’s sake, to keep my blood a little thinner.” In addition to forgoing medication and regular monitoring by her physician, Susan said that she cannot afford the diabetic supplies she needs to measure her blood sugar: “I can’t tell you right now where my diabetes is and that bothers me, because it’s much better when it’s being watched. Before, every three months I would have lab work and stuff done to see where I was at, and as long as I knew I was okay, I was okay. Now, I have this lingering concern, now I don’t know. I could be higher than I think I am. I can’t buy testers and stuff, I can’t afford that.” Dental Insurance

Maintaining proper dental health is a critical component of health. Insurance is a primary passport to receiving preventative and restorative dental care. Yet, access to dental care may be the most elusive of all health care treatments. Only 34 percent of workers in private industry earning less than $15 per hour have access to dental insurance from their employers, compared to 62 percent of those persons earning $15 an hour or more (U.S. Department of Labor 2005). We know that tooth decay (dental caries) is one of the most common chronic diseases affecting American children; by age eight, over 50 percent of children have experienced decay (Centers for Disease Control 2004). Poor children are significantly more likely to be without dental insurance than their more affluent counterparts and therefore visit the dentist far less often. Sixty-six percent of children living in households with income over 200 percent of the poverty line have seen a dentist over the past six months, compared to only 43 percent of poor children. Moreover, poor children are 50 percent more likely than nonpoor children to have gone more than five years without seeing a dentist. Not surprisingly, they are nearly three times as likely to have an unmet dental need (Dey and Bloom 2005). We found that most families did not have dental insurance after transitional OHP/Medicaid expired, as shown in table 3.1. Dental insurance and health insurance are highly correlated: among those who were medically uninsured,

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98 percent also were without dental insurance. For many, the pain associated with their dental problems was quite intense, affecting other aspects of their lives. Nonetheless, without insurance, many could not get the dental care they sorely needed. Types of Health Insurance Coverage

Although 40 percent of our respondents were uninsured eighteen months after leaving welfare when their transitional medical benefits had expired, 60 percent reported to us they had insurance from some source. From where did they get their insurance? Table 3.2 reveals specific details surrounding the source of their insurance coverage. Oregon Health Plan

About 40 percent of our respondents remained on OHP/Medicaid at the second survey. OHP remained the most common insurer; nearly two-thirds of those who had insurance at the second interview had it from OHP, as shown in table 3.2. Respondents had many opinions about the program, both positive and negative. Most expressed great appreciation for the services they received: “I don’t know what I would do without it” was a common sentiment. Another woman elaborated, voicing her appreciation and gratitude: When Scotty was a baby, he started having diarrhea really bad. Because I couldn’t get it to stop I took him in and they tested him right away for salmonella. It turned out that’s what he had and they were really good about connecting me with the health department and things like trying to get me to the right resources so I could figure out, OK, where did he get it, where’s it coming from? And they were so incredibly helpful trying to, getting me to all of that. Oregon Health Plan has truly been a lifesaver for us. I really don’t know what I would have done through both pregnancies, you know, with the thyroid, the depression, I don’t know what I would have done without it . . . When I’ve called to talk to somebody down at like their corporate offices or whatever, they’re always really helpful, they’re always like, OK, well what can we do to make you happy? I mean, I’ve never had a problem calling down there and they’re always really prompt, OK, this is the process you need to go through to get this taken care of and here let me take you, walk you through the steps and do you have the paperwork right there, I’ll fill it out with you. They’ve always been really helpful.

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Table 3.2 Insurance Coverage and OHP (percentages)

(If insured) Who provides current health insurance? OHP

Wave 1

Wave 2

N = 567

N = 331

89.1

65.3

Employer

7.4

26.9

Family member’s or partner’s employer

2.1

4.8

Purchase privately

0.4

0.3

Medicare

0.4

0.3

Other

0.7

2.4

OHP (OHP, Medicare)

88.0

66.7*

Private (employer, family member’s or partner’s employer, purchase privately, other)

12.0

33.3

9.0

12.3

Make too much money

19.4

34.2

Not a resident

19.4

4.6

(If insured) Insurance categories

(If uninsured) Reason not covered by OHP Owe OHP money

Have emergency-only coverage

0.0

6.8

Paperwork problems

4.4

13.2

Paperwork in process

11.9

4.6

7.4

6.4

Didn’t apply

26.9

17.8

(If insured by OHP) Feel stigmatized by medical provider using OHP

Other

28.7

40.2

(If insured by OHP) Feel stigmatized by dental provider using OHP

30.7

25.9

*p