1
Introduction

Having a disability shapes a person’s life, but it is not their total destiny.

Senator Robert Dole (1999)


Disability is not destiny for either individuals or the communities in which they live. Rather, disability is shaped by personal and collective choices. Positive choices made today not only can prevent the onset of many potentially disabling conditions but also can mitigate their effects and help create more supportive physical and social environments that promote a future of increased independence and integration for people with disabilities.

The future of disability in America is not a minority issue. If one considers people who now have disabilities, people who are likely to develop disabilities in the future, and people who are or who will be affected by the disabilities of those close to them, then disability affects today or will affect tomorrow the lives of most Americans. Current statistics suggest that the number of people with disabilities living in the community or in institutional settings now totals more than 40 million (between 13 and 14 percent of the population) and perhaps as many as 50 million if a more expansive definition of disability is used (see Chapter 3). In addition, in 1999, nearly 18 million adults had an older spouse or parent with a disability, and almost 4 million provided care to such a family member living



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The Future of Disability in America 1 Introduction Having a disability shapes a person’s life, but it is not their total destiny. Senator Robert Dole (1999) Disability is not destiny for either individuals or the communities in which they live. Rather, disability is shaped by personal and collective choices. Positive choices made today not only can prevent the onset of many potentially disabling conditions but also can mitigate their effects and help create more supportive physical and social environments that promote a future of increased independence and integration for people with disabilities. The future of disability in America is not a minority issue. If one considers people who now have disabilities, people who are likely to develop disabilities in the future, and people who are or who will be affected by the disabilities of those close to them, then disability affects today or will affect tomorrow the lives of most Americans. Current statistics suggest that the number of people with disabilities living in the community or in institutional settings now totals more than 40 million (between 13 and 14 percent of the population) and perhaps as many as 50 million if a more expansive definition of disability is used (see Chapter 3). In addition, in 1999, nearly 18 million adults had an older spouse or parent with a disability, and almost 4 million provided care to such a family member living

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The Future of Disability in America in the community (Spillman and Black, 2005a). Millions more people have children, siblings, or other younger family members with disabilities; and many provide informal care to these family members or to younger or older friends (Pandya, 2005). DISABILITY AND RELATED SOCIETAL TRENDS What was a real—but still decades off—demographic projection in 1991 when the Institute of Medicine (IOM) report Disability in America was published is now a much more urgent concern as the initial movement of the post-World War II baby boom generation into late life is about to begin. People born in 1946 will turn age 65 in 2011. The future of disability in America will, in considerable measure, depend on the country’s response to this demographic shift, which will substantially increase the numbers of people and the proportion of the population most at risk for disability. For people age 65 and over who live in the community, the percentage of individuals with disabilities is now approximately 40 percent, a figure that is three times that for younger people. A majority of those over age 85 experience disabilities. The percentage of the population ages 65 years and over will increase from approximately 12 percent in 2000 to almost 20 percent in 2030—or from almost 35 million people to more than 71 million (U.S. Census Bureau, 2004). The number of people age 85 or over is expected to grow from approximately 4.3 million (1.5 percent of the population) to approximately 9.6 million (2.6 percent of the population). Chapter 3 provides projections for the rates of disability among those ages 65 and over. Although older age is a major risk factor for disability, millions of younger people also live with disabilities. In 2004, more than 4 million children and young people between the ages of 5 and 20 years (6.5 percent) had disabilities (U.S. Census Bureau, 2005a). In the same year, some 20 million people ages 21 to 64 years, or approximately 12.1 percent of the total population in that age group, reported disabilities. Although the risk of an individual experiencing disability is lower in this age group than it is in the older age group, the total number of younger adults with disabilities currently exceeds the total for the population ages 65 and over. The younger group includes many people who have conditions that were once fatal in childhood and who are now experiencing premature or atypical aging related to their condition, its management, or other environmental factors. As discussed in Chapter 5, these individuals are moving into uncharted territory. Another concern for the future is that the prevalence of health problems and disabilities for American adults who are now in early and midlife may be increasing. The percentage of Americans ages 18 to 64 with reported

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The Future of Disability in America activity limitations grew during the 1990s (NCHS, 2005a). In addition, the prevalence of certain conditions that contribute to disability—notably, physical inactivity, diabetes, and obesity—is increasing in this age group; and surveys also show a worrisome increase in overweight or obesity among children (Federal Interagency Forum on Child and Family Statistics, 2005; NCHS, 2005a). These trends raise concerns that when people now in early or midlife enter late life, they may experience more disability than the current cohort of people over age 65. Beyond a substantial increase in the number of people in the American population most at risk of disability, the changing age distribution of the American population has other important implications for the future of disability in America. The Social Security Administration estimates that in 2031 the United States will have 2.1 workers for each Social Security beneficiary, compared to approximately 3.3 today (SSA, 2007b; see also SSA [2006c]). This projected decrease in the worker-to-beneficiary ratio underlies well-publicized concerns about the long-term financial future of Social Security, Medicare, and other programs that assist older Americans and that also aid many younger Americans who have serious physical or mental impairments. To the extent that impairments and limitations related to aging can be delayed or reduced, the expectation that many older individuals may need to work beyond the ages now specified for full Social Security benefits (age 67 for those born after 1959) will more easily be met (SSA, 2005b). The changing age distribution of the population likewise explains concerns about ability of the future workforce to provide paid long-term care services for the growing numbers of older and younger people with serious disabilities. One estimate is that this workforce would need to grow at an annual rate of 2 percent to maintain the current ratio of long-term care workers for the population age 85 or older, a growth rate that is almost seven times the 0.3 percent rate of growth projected for the working-age population overall (Friedland, 2004). Recent years have seen a rapid increase in the number of workers providing personal care services and a less sharp increase in the number of nursing home and residential care aides, but data suggest that only one worker is available for every 10 potential consumers (Kaye et al., 2006). As essential as paid caregivers are, family members—primarily wives, mothers, daughters, and daughters-in-law—have traditionally provided the great majority of care for older and younger people with disabilities. This source of support is under pressure from the post-baby boom reduction in family size, decreases in marriage rates and increases in divorce rates, and growth in the participation of women in the paid workforce during recent decades. The average size of the American family dropped from 3.58 in 1970

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The Future of Disability in America to 3.14 in 2000, and the drop would have been even larger without the country’s young immigrant families (Day, 1996; Simmons and O’Neill, 2001). In addition, the percentage of people who have no children has grown. For example, among women ages 40 to 44, the percentage with no children rose from 10.2 percent in 1976 to 19.3 percent in 2004 (U.S. Census Bureau, 2005b). Elderly people in the future will have fewer children to rely on for assistance, and lower rates of marriage and higher rates of divorce will limit the availability of spouses as caregivers (DHHS/U.S. Department of Labor, 2003). Informal caregiving is also under pressure from the increases in the rates of female workforce participation. Between 1970 and 2000, the percentage of women who were in the labor force grew from 43 to 61 percent, although this trend seems to be leveling off (Population Reference Bureau, 2005). Paid employment, even full-time employment, certainly does not preclude a caregiving role, but it can make the role more difficult. One survey indicated that almost half of informal caregivers ages 50 to 64 who provided care for someone age 18 or over were employed full time (Pandya, 2005). A 2004 survey reported that 61 percent of family caregivers for people ages 18 and over were women, down from a reported 73 percent in a 1997 survey (NAC/AARP, 1997, 2004). Women, however, represented a higher proportion of those providing the most intense levels of care. At the same time that they disproportionately provide care, women who themselves need care are the most vulnerable to the lack of family caregivers, in part because many women outlive their older husbands. Almost three-quarters of long-term nursing home residents are female (NCHS, 2005a). In the future, assistive technology—from advanced technologies that monitor individuals in their homes to memory aids to relatively simple devices such as canes and walkers—likely will play an important role in supporting independence for older adults and reducing their need for personal caregiving. Researchers have reported that between 1984 and 1999 the use of formal or informal caregiving for older adults with disabilities declined, with especially steep drops from 1995 to 1999 (Spillman and Black, 2005a; see also Freedman et al. [2006]). They concluded that the decline is associated with an increase in the reported use of walkers, shower seats, and other assistive technologies, especially among older people who had neither a spouse nor children to provide informal caregiving. ORIGIN OF STUDY TASKS AND OVERVIEW OF REPORT The idea for this study emerged from discussions with the Centers for Disease Control and Prevention (CDC) about an examination of developments since the publication of Disability in America (IOM, 1991) and the

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The Future of Disability in America subsequent 1997 IOM report Enabling America. The study began with a workshop in 2005 and a workshop report that included the papers presented at the workshop (IOM, 2006b). For the study’s second phase, CDC enlisted support from the National Institute on Disability and Rehabilitation Research (U.S. Department of Education) and the National Center for Medical Rehabilitation Research (National Institutes of Health). As part of an examination of the developments that have taken place since the publication of the 1991 and 1997 reports and as agreed upon with the study’s sponsors, the study focused on several topics, including Methodological and policy issues related to the definition, measurement, and monitoring of disability Trends in the amount, types, and causes of disability Secondary health conditions and aging with disability Transitions for young people from pediatric to adult health care services Assistive technologies and supportive physical environments Coverage of assistive technologies and risk adjustment of payments to health plans by Medicare and other payers Directions for research To undertake this study, the IOM, which is the health policy arm of the National Academy of Sciences, appointed a 14-member committee of experts. As wide-ranging as the study topics are, they could not include many issues important to people with disabilities, policy makers, clinicians, researchers, and others interested in the future of disability in America. For example, to have investigated the financial dimensions of each of the study topics would have required a report in itself (perhaps more than one). Assessing just the public and private financing of assistive services and technologies proved a remarkably time-consuming task. To cite another example, a number of aspects of long-term care that are important to people with disabilities are not examined in depth; long-term care was, however, the focus of another IOM report, Improving the Quality of Long-Term Care (2001c). Also, when the present study was being planned, another project to examine formal and informal caregiving for people needing personal assistance was planned, so that topic was not included in this study. (That project has not, however, been funded.) Furthermore, during the course of its work, the committee found that the time and resources available to it would not allow a comprehensive review of certain issues, in particular, the broad range of environmental factors that contribute to disability. One intended audience for this report includes administrative and legislative policy makers and those who advise them about programs, policies, and research priorities that affect people with disabilities and their families. Other audiences include health care professionals, researchers, and advo-

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The Future of Disability in America cacy groups. Although this report and its recommendations are aimed at these groups, the committee has tried to make the discussion relevant and understandable to a broader public. This report focuses on the United States. However, consistent with discussions with the project’s sponsors, the next chapter selectively considers concepts of disability developed as part of an international consensus-building process. It endorses the use of those concepts as the basis for a common conceptual framework for disability research and policy. The remainder of this chapter provides a brief overview of encouraging and disappointing developments since the publication of the 1991 IOM report and the choices ahead. It also places disability in public health and policy contexts. Chapter 2 examines different definitions of disability, presents the conceptual framework adopted by the committee, and provides an assessment of the system for monitoring disability in America. Chapter 3 describes trends in disability in early, middle, and late life. Chapter 4 emphasizes the importance of considering disability across the life span as the context for a discussion of one important health care transition: the transition for young people from pediatric health care to adult health care. Chapter 5 discusses secondary health conditions and aging with disability. The focus of Chapters 6 and 7 is how the physical environment and technologies contribute to disability or to independence and participation in the community. Chapters 8 and 9 examine several issues related to the financing of health care for people with disabilities, including coverage of assistive technologies and services and methods for adjusting payments to health insurance plans so that they fairly reflect the expected costliness of the plan enrollees. Chapter 10 discusses the organization and financing of disability-related research. Appendix A includes more information about the committee’s charge and activities. Appendix B includes the table of contents for the committee’s 2006 workshop report, and Appendix H includes short biographies of the committee members. The report also includes several substantive appendixes. Appendix C supplements Chapter 8 with a detailed discussion of the methods of risk adjustment of payments to health plans. Appendixes D through G provide supplementary information about the policy environment relevant to people with disabilities in the areas of employment, health, transportation, and telecommunications.

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The Future of Disability in America DEVELOPMENTS SINCE PUBLICATION OF THE 1991 AND 1997 IOM REPORTS The 1991 and 1997 IOM reports highlighted disability as a topic of scientific inquiry and public health action.1 A significant feature of the 1991 IOM report was its advocacy for a comprehensive national approach to disability prevention based on a more environmentally focused and less individually and medically focused model of the processes that create or reverse disability. It also called for new collaborations among researchers and public and private health care groups and for innovations in the organization and delivery of health care services. The 1997 IOM report stressed the importance of recognizing rehabilitation science and rehabilitation engineering as legitimate scientific fields of study. It recommended a range of efforts aimed at strengthening the science base and the transfer of technology to prevent disability and improving the health, productivity, and quality of life for individuals with disabilities. In discussing developments since the earlier reports, the current report focuses more on developments since publication of the 1991 report and less on those since publication of the 1997 report, which was narrower in focus. The nation has seen important progress since 1991. Studies indicate that the incidence of certain types of late-life disability has declined during the last two decades, although the reasons for these decreases and their implications have generated debate (see Chapter 3). As noted earlier, however, data for younger populations raise concerns that this trend of declining disability in late life may not continue. In addition, advances in science and engineering increasingly allow people to overcome or compensate for physical or mental impairments through medical interventions, assistive technologies, or environmental modifications. Scientists and clinicians know more today about the nature, extent, and management of many secondary health conditions such as pressure ulcers that can—if they are not prevented or successfully treated—become more limiting and dangerous than the initial, primary health condition. Diverse preventive measures have contributed to reductions in the incidence of certain kinds of injuries, developmental disabilities, and other health 1 Earlier, in 1976, the National Research Council of the National Academy of Sciences issued the report Science and Technology in the Service of the Physically Handicapped (NRC, 1976). In transmitting the report to the Congress, the president of the Academy said, “The concern of the National Academy of Sciences for the needs of the disabled and handicapped members of our society has deep roots, dating back to World War II when the Academy undertook a program to improve the quality and availability of prosthetic and orthotic devices for military amputees” (p. iii). Subsequent work extended that concern from veterans to all people with disabilities. The 1976 report dealt with children as well as adults and with many issues similar to those addressed in the present report, especially strengthening research and development and making assistive technologies more available.

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The Future of Disability in America conditions that can contribute to disability. Although the amounts invested in disability research are very modest compared with the amounts invested in biomedical research and are quite small given the impact of disability on individuals and communities, more social and behavioral research is available to guide understanding of how physical and social environments shape disability and how environments can be made more supportive. In addition to continuing efforts to prevent potentially disabling injuries and illnesses, continuing efforts to minimize the unwanted consequences of such conditions on people’s lives are critical. Strategies for doing so are discussed in the report chapters devoted to discussions of secondary conditions, environmental barriers, assistive and accessible technologies, and financing of assistive services and equipment. Many technological advances that affect consumers and workers overall have had liberating consequences for people with disabilities. For example, improvements in computer technology and electronic communications (combined with reductions in the costs of these technologies) make it much more feasible—if not common—for many people with disabilities to telecommute, which relieves employees of both the physical challenges and the time demands of traveling to workplaces. In the future, technological innovations and employment policies that provide additional work flexibility and accommodations at work should make it easier for both younger and older people with disabilities to be employed. For older workers with chronic health conditions, such accommodation could reduce the impact of the scheduled and potential future increases in the age at which full Social Security benefits are available. Despite advances in science and technology, a critical question is whether the research gains achieved since 1991 have been translated into public and private policy and practice in the United States. Has society—in the form of government officials, clinicians, employers, and others—possessed the awareness, the resources, and the will to apply existing knowledge? This report describes a number of areas in which the application of existing knowledge is limited, and it discusses more generally the very modest progress made over the past two decades toward the adoption of several public policy and practice recommendations made in the 1991 and 1997 IOM reports. For example, Medicare, Medicaid, and other health plans still significantly restrict access to the health care services, assistive technologies, and personal care services that can enhance independence and make it easier for people with physical and cognitive impairments to be productive and active members of their communities. Nonetheless, changes in the federal-state Medicaid program have—with some impetus from the U.S. Supreme Court—have reduced the imbalance between resources allocated for institu-

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The Future of Disability in America tional care and resources for home- and community-based services for people of limited means who are seriously limited in their self-care abilities. Even when services are covered by Medicare or other plans, physicians and others may lack the knowledge, motivation, and organizational or system support to appropriately assist individuals with disabilities with maintaining and improving their health and well-being and in managing age-related physical and cognitive changes. Some of the shortcomings in professional practice reflect the shortcomings in health care professions education. During the past 40 years and more, the creation of accessible environments that promote independence and community participation has become a focal point of advocacy by and for people with disabilities. The 1991 IOM report particularly stressed the interaction between individual characteristics and environmental barriers in creating disability. Despite progress, significant environmental barriers remain, sometimes in places where one would not expect them, for example, in hospitals and health care professional offices that lack buildings, equipment, and services suitable for people with physical mobility, sensory, and other impairments. Outside the health care sphere, many public transportation systems, buildings, and neighborhoods still present barriers and even hazards to people with disabilities. As discussed in Chapter 7 and Appendix F, policies requiring accessibility are not always updated to cover new technologies, such as certain Internet communication tools. High rates of unemployment—and disincentives to employment—are a continuing problem for people with disabilities. In 1991, the Americans with Disabilities Act (ADA) was new and a source of great hope. This law—in combination with other antidiscrimination policies and some state and local policies—has helped to increase the recognition of environmental obstacles to full participation in community life by people with disabilities. At the same time, as described in Appendixes D and E, limited resources for enforcement and several restrictive judicial interpretations of the law make the ADA one source among many of the missed opportunities that have left the future of disability in doubt. The 1991 report noted that disability (in the form of activity limitations) was associated with lower income, although it noted different possible explanations for this relationship. Differences in survey questions make direct comparisons difficult, but disparities clearly remain. For example, based on census data for 2005, 25 percent of working-age people with disabilities and 9 percent of people without disabilities live in poverty (Houtenville, 2006). Seventy percent of working-age people without disabilities live in owner-occupied housing, whereas 62 percent of people with disabilities do so. The data reported in Chapter 3 show an increasing

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The Future of Disability in America gap between the levels of employment for people with and people without activity limitations. The 1997 report bluntly stated that the combined federal research effort in the area of disability was not adequate to address the current and future needs of people with disabilities and that more funding would be required to expand research to meet those needs. Notwithstanding modest increases in funding during the late 1990s, the situation remains essentially the same 10 years later. Disability research is a miniscule item in the federal government’s research budget that is not in line with either the current or the projected future impact of disability on individuals, families, and American society. Despite the important conceptual contributions achieved by the time of publication of the 1991 and 1997 reports, the absence of universally accepted and understood terminology and concepts with which to describe and discuss disability continues to hamper clear communication. Responding to these ongoing concerns and to increasing interest worldwide in monitoring and measuring disability, the World Health Organization released the International Classification of Functioning, Disability and Health (ICF) in 2001. The ICF was a major revision of the organization’s 1980 classification, and it involved an international process of consultation and consensus building (WHO, 2001). As discussed further in Chapter 2, this report employs the language and concepts of the ICF framework and recommends the widespread adoption and further development of the framework to provide a common, international language for data collection and research to inform policies and programs that promote the independence and integration into the community of people with disabilities. CHOOSING THE FUTURE OF DISABILITY IN AMERICA The shortcomings just summarized raise serious questions about how individuals, families, and society in general will cope in coming decades when these deficiencies are combined with projections of significant increases in the population most at risk of disability; possible shortages in the caregiving workforce; and escalating costs for programs such as Medicare, and Medicaid. This report argues that further actions—taken sooner rather than later—can help this nation avoid the most harmful and inequitable outcomes and achieve positive improvements in the ability of people with disabilities to lead independent, fulfilling, and productive lives. Doing so will require more intensive efforts to build on past successes, for example, by more fully developing and taking advantage of research and technological advances to promote healthy aging and prevent or limit health conditions and environmental barriers that contribute to disability. It will also

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The Future of Disability in America require a greater societal commitment to fulfilling the promise of the ADA and ending discrimination against people with disabilities. Given the demographic, societal, and disability trends outlined above and discussed in detail in this report, how will U.S. society make the choices that will help define the future of disability? Will the country commit to actions to limit the development and progression of physical and mental impairments in late life, promote good health for children and young adults with early-onset disabilities, and reduce environmental barriers for people with existing impairments? The record of the past 16 years offers some basis for hope but also provides reason for serious concern about the future. In the coming decades, as the number of Americans living with disabilities continues to increase, costs for health care and other services will increase. Concurrently, the nation will face pressure from other sources of increasing health care costs, which have consistently grown faster than the gross domestic product (Chernew et al, 2005a). Although individuals and families will bear a significant share of the increasing costs (and the noneconomic costs as well), rising costs will stress federal and state governments, which are responsible for Medicare, Medicaid, and other critical programs. Medicare, Medicaid, and other public health care programs that benefit people with and without disabilities are supported by taxes. Projections of future spending increases for these programs and for income support programs such as Social Security have raised the prospect of difficult trade-offs, such as reduced spending for other purposes or higher taxes, or both. Reducing inefficiency and the inappropriate use of health care services will help, but such reductions are unlikely to eliminate the need for the difficult choices that policy makers recognize need to be made but are, in large measure, delaying. How Americans make trade-offs or choices about future spending will reflect their fundamental values about the balance between community and individual responsibility. Still, it should be recognized that health, social, and other policies that assist people with disabilities do not represent only current transfers of resources from those without disabilities to those with disabilities or from mostly younger people to mostly older people. Over their life spans, the majority of Americans will experience disabilities or will have a family member who does. People may not realize it, but the support that they give today for policies that affect future funding for disability-related programs is a statement about the level of support that they can expect to receive at later stages in their own lives. These policies will help define the future of disability in America. This report argues that Americans as a people should take explicit responsibility for defining the future of disability based on a commitment to fully integrating people with disabilities into community life and to de-

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The Future of Disability in America veloping the knowledge, policies, technologies, and public understanding to support that goal. This report underscores the growing evidence that disability is not an unavoidable consequence of injury and chronic disease but results, in considerable measure, from societal decisions and actions in the public arena as well as in commerce and other private domains. Actions that prevent or reduce rather than create disability include making products and places more accessible to people with disabilities, eliminating policy disincentives for work, financing equitable access to assistive services and technologies, preparing health care professionals to provide appropriate care to people with disabilities, and investing in research to guide the design of policies and practices that promote independence and participation. Ultimately, the future of disability in America rests with Americans. THE FUTURE OF DISABILITY IN A PUBLIC HEALTH CONTEXT The future of disability is part of the future of public health because public health initiatives are important to monitor disability trends, prevent primary and secondary disability, and reduce disparities in health and well-being in the population. In a 1988 report, The Future of Public Health, another IOM committee noted concerns that “this nation has lost sight of its public health goals” and concluded that “we have slackened our public health vigilance nationwide” and thereby unnecessarily threatened the public’s health (IOM, 1988, pp. 1–2). The report cited chronic diseases among the “enduring” problems of public health, but it did not really anticipate Disability in America, which labeled disability as “the nation’s largest public health problem, affecting not only people with disabilities and their immediate families, but also society at large” (IOM, 1991, p. 32). During the past century and more, public health policies and programs have contributed to major decreases in mortality. In 1900, the age-adjusted death rate in the United States was an estimated 2,518 per 100,000 population (Hoyert and Anderson, 2001), whereas in 2003 the rate was an estimated 831 per 100,000 population (Hoyert et al., 2005). With this success in reducing premature mortality, the public health focus on preventing and reducing morbidity has increased, as has the emphasis on the more positively expressed goal of promoting health. Specific attention to disability and the health and well-being of people with disabilities has taken more time to evolve. This evolution, which is still incomplete, is illustrated in the history of the Healthy People initiative, which was created by the U.S. Surgeon General in 1979 to establish, promote, and monitor national health objectives. The initial Healthy People objectives focused “primarily on premature death with little attention to premature disability” (Michael Marge, as quoted in a previous IOM report [IOM, 1990b, p. 64]). A few objectives did refer to disability, such as this

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The Future of Disability in America goal: “To improve the health and quality of life for older adults and, by 1990, to reduce the average annual number of days of restricted activity due to acute and chronic conditions by 20 percent to fewer than 30 days per year for people aged 65 and older” (U.S. Public Health Service, 1979, p. 7-1). Healthy People 2000 (DHHS, 1990), which was released in 1990, included objectives related to the prevention of certain disabling conditions and the collection of information about disabilities, but the number of such objectives was substantially short of the 32 proposed by an interagency group organized for that purpose (Marge, 1998). (Some objectives were omitted because baseline data with which to measure progress did not exist, and the availability of baseline data was a criterion for the inclusion of an objective.) It was only 2 years before publication of the 1990 report that CDC had emerged (after some hesitation) as the congressionally designated lead agency for a federal disability prevention initiative (Marge, 1999). The increased awareness of disability as a public health issue is evident in Healthy People 2010 (DHHS, 2000b). In addition to attention to disability throughout the document, the report devotes a chapter to disability and secondary conditions. That chapter sets forth specific goals, such as increasing the proportion of adults with disabilities who participate in social activities or who report satisfaction with life (Box 1-1). It takes aim at the notion that people with disabilities are necessarily in poor health and that public health should concern itself only with preventing disability rather than also promoting health and well-being among people with disabilities. In 2005, the U.S. Surgeon General further underscored disability as an important public health concern in his Call to Action to Improve the Health and Wellness of Persons with Disabilities (U.S. Public Health Service, 2005). That statement appealed for action to improve the quality of life for people with disabilities and increase their access to disease prevention and health promotion services. It set forth four broad statements describing goals to be achieved (p. 2): People nationwide understand that persons with disabilities can lead long, healthy, productive lives. Health care providers have the knowledge and tools to screen, diagnose, and treat the whole person with a disability with dignity. Persons with disabilities can promote their own good health by developing and maintaining healthy lifestyles. Accessible health care and support services promote independence for persons with disabilities. Despite these and other signs of progress since 1991 in the understanding of disability as a public health issue, policy and research on this dimen-

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The Future of Disability in America BOX 1-1 Public Health Objectives in Healthy People 2010 6-1 Include in the core of all relevant Healthy People 2010 surveillance instruments a standardized set of questions that identify “people with disabilities.” 6-2 Reduce the proportion of children and adolescents with disabilities who are reported to be sad, unhappy, or depressed. 6-3 Reduce the proportion of adults with disabilities who report feelings such as sadness, unhappiness, or depression that prevent them from being active. 6-4 Increase the proportion of adults with disabilities who participate in social activities. 6-5 Increase the proportion of adults with disabilities reporting sufficient emotional support. 6-6 Increase the proportion of adults with disabilities reporting satisfaction with life. 6-7 Reduce the number of people with disabilities in congregate care facilities, consistent with permanency planning principles. 6-8 Eliminate disparities in employment rates between working-aged adults with and without disabilities. 6-9 Increase the proportion of children and youth with disabilities who spend at least 80 percent of their time in regular education programs. 6-10 (In development) Increase the proportion of health and wellness and treatment programs and facilities that provide full access for people with disabilities.* 6-11 (In development) Reduce the proportion of people with disabilities who report not having the assistive devices and technology needed.* 6-12 (In development) Reduce the proportion of people with disabilities reporting environmental barriers to participation in home, school, work, or community activities.* 6-13 Increase the number of Tribes, States, and the District of Columbia that have public health surveillance and health promotion programs for people with disabilities.    *As part of ongoing implementation activities to maintain the accuracy and relevance of Healthy People 2010, the U.S. Department of Health and Human Services has proposed that Objectives 6-10, 6-11, and 6-12 no longer be described as “developmental.” It has also proposed revising the text of Objective 6-10 so that it would read “Increase the proportion of people with disabilities who report having access to health and wellness programs” (http://www.healthypeople.gov/data/midcourse/comments/facontents.asp?id=6). SOURCE: DHHS (2000b).

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The Future of Disability in America sion of disability are still limited. Recommendations later in this report call for CDC to give disability issues more prominence in its oversight of public health programs, surveillance, and research and to help lead a campaign to increase public and professional awareness of technologies that promote independence and productivity. THE POLICY ENVIRONMENT OF DISABILTY Both Disability in America and Enabling America argued for fundamental changes in how policy makers think about disability. The two reports called for increased attention to the critical roles that the physical and social environments—for example, work and school arrangements, building design, and transportation—play in determining the extent to which individuals with chronic physical and mental conditions can function independently and participate fully in community life. The 1997 report stressed that federal investment in disability and rehabilitation research was seriously inadequate, given the potential for clinical, engineering, social, and other research to improve the health, productivity, and quality of life of people with disabilities. As in the past, the future of disability in America will depend in important ways on government policies in many areas in addition to public health. This report raises questions about the content of some policies (e.g., the Medicare statute’s narrow and sometimes counterproductive definition of “medically necessary care”), the implementation of other policies (e.g., the restrictive judicial interpretations of the ADA), and the timely adaptation of policies in response to changing circumstances (e.g., rapid innovation in communications technologies). Several chapters include policy recommendations. Government policies related specifically and directly to disability—which reflect decades of advocacy by and on behalf of people with disabilities—are a source of both support and frustration. For example, although they are sometimes criticized for emphasizing welfare dependency over civil rights and distorting incentives for work, the Social Security Disability Insurance (SSDI) and Supplemental Security Income programs serve as important social safety nets for people with serious chronic health problems and impairments. At the end of 2004, almost 8 million “disabled workers and dependents” received income under the provisions of the Social Security Act, and that number increased significantly during the 1990s (SSA, 2006e). Still, features of SSDI, including the link between SSDI benefits and Medicare coverage, discourage people who might be able to do so from returning to work. As discussed in Chapter 8, the federal government has attempted to devise and test programs that reduce this disincentive for work by allow-

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The Future of Disability in America TABLE 1-1 Timeline of Milestones in U.S. Disability Policy 1857 Congress created the Columbia Institution for the Instruction of the Deaf and the Dumb and the Blind (now Gallaudet University) 1862 Congress established veterans’ pensions based on war-related disability 1890 Disability Act of 1890 provided veterans’ pensions whether or not a disability was war related 1918 Soldiers Disability Act created vocational rehabilitation program for veterans 1920 Civilian Vocational Rehabilitation Act expanded the program to civilians 1935 Social Security legislation did not include disability insurance but created state-federal assistance programs that covered certain adults and children with disabilities 1943 Barden-Lafollette Act expanded eligibility for vocational rehabilitation services to people with cognitive and psychiatric impairments 1950 Social Security Act amendments extended state-federal assistance program to include “needy disabled” 1956 Social Security Act amendments created Social Security Disability Insurance to provide cash benefits to eligible workers ages 50 to 64 and adult children of deceased or retired workers if the child was disabled before age 18; later amendments expanded eligibility to younger workers 1961 American National Standards Institutes (a private group) set first minimum standards formaking buildings accessible for “the physically handicapped” 1961 President’s Panel on Mental Retardation was created; in 1963 it called for the deinstitutionalization of people with mental illness 1965 Developmentally Disabled Assistance and Bill of Rights Act passed; Medicare and Medicaid programs established; Older Americans Act included provisions related to frail or homebound older people 1968 Architectural Barriers Act required accessibility in construction or alteration of federally owned or leased buildings 1970 Urban Mass Transportation Act required local authorities to design mass transit systems to be accessible to people with “handicaps” 1972 Supplemental Security Income (SSI) program established a federal needs-based income support program for “aged, blind, and disabled” to replace state-federal assistance program; SSI recipients became eligible for Medicaid in most states 1972 Medicare coverage extended to eligible adults under age 65 with disabilities 1973 Rehabilitation Act shifted priority for vocational rehabilitation to severely disabled individuals, provided civil rights protections (including nondiscrimination in federal programs and in hiring by federal agencies and most federal contractors), and created the Architectural and Transportation Compliance Board (now the Access Board) to set facility design criteria and improve compliance with accessibility standards 1975 Education for All Handicapped Children Act required free, appropriate public education for children with disabilities and authorized financial incentives to promote compliance

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The Future of Disability in America 1978 National Institute on Disability and Rehabilitation Research and National Council on Disability created 1984 Voting Accessibility for the Elderly and Handicapped Act passed 1985 Amendments to Title V of the Social Security Act changed terminology related to block grant programs from “crippled children” to “children with special health care needs” 1986 Air Carriers Access Act passed 1986 Electronic Equipment Accessibility amendment (Section 508) to the Rehabilitation Act of 1973 provided guidelines for federal agency procurement 1988 Technology-Related Assistance for Individuals with Disabilities Act provided state grants to promote assistive technology 1988 Fair Housing Amendments Act prohibited discrimination in housing against people with disabilities 1990 Americans with Disabilities Act provided for inclusion and nondiscrimination based on disability in several areas: employment (Title I); government services (Title II); public accommodations, including medical facilities (Title III); telecommunications (Title IV); and certain other services, such as insurance (Title V) 1990 Education for All Handicapped Children Act renamed as Individuals with Disabilities Education Act (IDEA) 1991 National Center for Medical Rehabilitation Research created in the National Institute of Child Health and Human Development, National Institutes of Health (1990 legislation) 1996 Telecommunications Act of 1996 required that broadcast and cable television provide closed captions to improve accessibility for people with hearing loss 1997 Amendments to IDEA supported initiatives for transition services for young people moving from school to adult living 1998 Assistive Technology Act established grant program for states 1998 Amendments to the Rehabilitation Act required electronic and information technology acquired by federal agencies to meet accessibility standards (regulations issued in 2001) 1999 Ticket to Work and Work Incentives Improvement Act provided health benefits and other encouragements for people to work rather than rely on cash benefits and reinforced requirements for federal agency purchase of accessible electronic equipment 2001 New Freedom Initiative announced by executive order with a focus on access to assistive technologies, work, education, and other opportunities for people with disabilities 2004 Amendments to IDEA called for every state to develop a transition monitoring plan NOTE: This table does not include important U.S. Supreme Court cases, negotiated settlements, or other outcomes of litigation. See Appendixes D, E, and F. SOURCES: U.S. House of Representatives, Committee on Ways and Means (1974), Welch and Palames (1995), Berkowitz (2000), U.S. Department of Education (2000), Kaiser Commission (2002, Appendix 1), Blanck and Song (2003), Murray (2003), SSA, (2003a, 2005a), NCLD (2006), and Rasch (2006).

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The Future of Disability in America ing people who have qualified for SSDI and Medicare to retain health care benefits, under certain circumstances, if they become able to work. Table 1-1 presents a capsule summary of historical milestones in federal legislative and administrative policies that were intended specifically to benefit people with disabilities. Early policies often emphasized income support. Many significant policies were adopted in the 1960s, and the pace of policy development accelerated through the 1970s as a civil rights perspective was embraced by and for people with physical or mental impairments. In addition, other policies that were not narrowly aimed at people with disabilities have brought substantial benefits to this group. Notable examples include the initial Social Security Act (1935) and the initial Medicare legislation (1965), both of which encompassed the age group at the highest risk for disability and made benefits available without regard to health or disability status or economic need. The diverse targets of the policies listed above—education, employment, health, voting, transportation, telecommunications, housing, and more—underscore the breadth and depth of disadvantage and discrimination that people with disabilities experience. Today, much of the focus of advocates is on interpreting, refining, and fully implementing existing policies related to disability while defending against policy changes or interpretations that could directly or indirectly threaten people with disabilities. Examples of the latter include some potentially harmful changes in Medicaid, as described in Chapters 8 and 9. Table 1-1 does not include decisive U.S. Supreme Court decisions that have affected—sometimes positively and sometimes negatively—the scope and application of federal disability statutes and regulations. For example, several decisions have significantly limited the scope and potential impact of the ADA as it affects discriminatory actions by state governments and discrimination in private employment (see, e.g., the discussion of Murphy v. United Parcel Service, Toyota v. Williams, and other cases in Appendix E). In contrast, the Supreme Court expanded the reach of the ADA in Olmstead v. L.C., when it concluded that the ADA required states to provide community-based rather than institutional services for people with mental disabilities when it was medically appropriate and acceptable to the individual in question (see Appendix D). This decision reinforced and accelerated policies and programs already in place to promote home and community-based services as an alternative to institutional care (see Chapter 9). Much of the foundation for the ADA, including key definitions and prohibitions, was laid by the Rehabilitation Act of 1973. This legislation, which remains in force, prohibits discrimination on the basis of disability in programs conducted by federal agencies, in programs receiving federal financial assistance, in federal employment, and in the employment practices of federal contractors.

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The Future of Disability in America The five titles of the ADA extended and expanded the protections of the Rehabilitation Act in important ways. They banned discrimination against qualified individuals with disabilities in any aspect of public- or private-sector employment; prohibited discrimination by public institutions, including stateand local governments (whether federal funding is involved or not); and prohibited discrimination in the provision of goods or services by commercial facilities and places of public accommodation, including private health care facilities. The legislation also directed improvements in the availability of certain interstate and intrastate telecommunications services for people with hearing and speech impairments (see Appendix F). One critical feature of the ADA is that enforcement is, for the most part, reactive. It depends substantially on federal agency responses to complaints by or on behalf of individuals who have encountered violations of the law. The U.S. Congress has been criticized for providing insufficient funding for enforcement, and agencies have been cited for not developing coherent strategies and priorities for enforcement of antidiscrimination laws (see, e.g., NCD [2000c]). The discussion of health care facilities in Chapter 6 illustrates some of the strengths and limitations of the ADA and other laws and regulations in achieving accessible physical environments. As is true for many other public policies, the effectiveness of the ADA and other policies very much depends on voluntary action by regulated entities, informal pressure by advocates, and the creation of a supportive cultural environment. A supportive and aware public will be vitally important in the years to come as critical choices continue to be made about policies that affect people with disabilities.