Summary

Today, between 40 million and 50 million people in the United States report some kind of disability. That number will likely grow significantly in the next 30 years as the baby boom generation enters late life, when the risk of disability is the highest. If one considers people who now have disabilities (at least one in seven Americans), people who are likely to develop disabilities in the future, and people who are or who will be affected by the disabilities of family members and others close to them, then disability affects today or will affect tomorrow the lives of most Americans. Clearly, disability is not a minority issue.

In considerable measure, the future of disability in America will depend on how this country prepares for and manages a complex array of demographic, fiscal, medical, technological, and other developments that will unfold in the next several decades. Much can be done now to make this future one that enables people with disabilities to lead full and productive lives. Inaction will lead to individual and societal costs—avoidable dependency, diminished quality of life, increased stress on individuals and families, and lost productivity.

DEVELOPMENTS SINCE PUBLICATION OF THE 1991 AND 1997 IOM DISABILITY REPORTS

The 1991 Institute of Medicine (IOM) report Disability in America and the 1997 IOM report Enabling America highlighted disability as a topic of public health action and scientific inquiry. The reports also offered recommendations on the prevention of disability and the role of rehabilitation science and engineering.

For this report, which was supported by the Centers for Disease Control and Prevention (CDC), the U.S. Department of Education, and the National Institutes of Health, a new IOM committee was charged with reviewing developments since the publication of the earlier IOM reports. As agreed upon with the study’s sponsors, the review 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 with disabilities 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; and
  • directions for research.

The committee concluded that the United States has seen some progress since the publication of the earlier IOM reports. This progress includes a growing understanding that disability is not an inherent attribute of individuals. Rather, it results from interactions between individuals and their physical and social environments. Continuing advances in science and engineering have brought better assistive technologies that make these interactions with the environment easier. Likewise, advances in mainstream electronic and information technologies—combined with regulatory requirements for accessibility features—have been liberating for many people with disabilities.

In public health and clinical medicine, a range of new or improved preventive measures continue to reduce the incidence of certain kinds of injuries, developmental disorders, and other health conditions that can contribute to disability. Among older adults the chance of having an activity limitation has declined during the last two decades, although data suggest that younger adults and children have an increased chance of having an activity limitation. Most state Medicaid programs have increased the re sources that they provide for community and home services that help people with serious disabilities to avoid institutional care. Programs for children with disabilities and other special health care needs have expanded.

At the same time, little progress has been made in adopting a number of the public policy and practice recommendations made in 1991 and 1997. For example, the 1997 IOM report bluntly stated that the federal research effort in the area of disability was inadequate. Despite modest increases in funding during the late 1990s, research spending on disability is miniscule in relation to current and future needs. Medicare, Medicaid, and private health plans continue to apply outdated policies that restrict access to assistive technologies and services. Other significant environmental barriers remain, for example, in hospitals and clinics that lack buildings, equipment, and services suitable for people with mobility, sensory, and other impairments. In 1991, the newly enacted Americans with Disabilities Act (ADA) was a source of great hope for those concerned about such barriers. Although the legislation has helped to increase awareness of the barriers in health care facilities, transportation, workplaces, and elsewhere, its implementation and enforcement have often been disappointing. These and other areas of inaction raise serious questions about how individuals, families, and society will cope with the challenges of disability in America during the coming decades.

This report argues that concerted action—taken sooner rather than later—is essential for this nation to avoid a future of harm and inequity and, instead, to improve the lives of people with disabilities. Its main themes and recommendations can be summarized and grouped around four general topics—disability monitoring, disability research, access to health care and other support services, and public and professional education—and 10 key points. Table S-1 presents an overview of the recommendations by showing the topic areas, the key points within these areas, the relevant actors, and the related recommendations. The complete list of 18 recommendations appears at the end of this summary.

TABLE S-1. Report Recommendations in Overview.

TABLE S-1

Report Recommendations in Overview.

DISABILITY MONITORING

Adopt and refine the International Classification of Functioning, Disability and Health as the conceptual framework for disability monitoring and research.

Since publication of the 1991 IOM report, many organizations have taken significant steps to improve disability monitoring, but further improvements are needed. These further improvements include adoption of the International Classification of Functioning, Disability and Health (ICF) of the World Health Organization (WHO) as the conceptual framework for disability monitoring and research, promoting improvements in the framework, and working to align measures of disability with the ICF. Achieving agreement on concepts for describing and measuring different aspects of disability should increase the comparability of research findings and make research more useful for decision makers. Directions for improving the ICF framework include further development of the classification of environmental and personal factors that contribute to disability.

Although national and international efforts to develop these refinements are important and although it would be desirable to achieve resolution of these and other issues through WHO, U.S. agencies and researchers can act—as many are already doing—to apply the ICF concepts and terminology. This report follows the ICF by using “disability” as an umbrella term for physical or mental impairments (e.g., limitations in joint mobility), activity limitations (e.g., limitations in dressing), and participation restrictions (e.g., restrictions in working).

Create a comprehensive disability monitoring system.

The lack of a comprehensive disability monitoring program, highlighted in the 1991 IOM report, remains a serious shortcoming in the nation’s health statistics system. Today, disability statistics must be patched together from multiple, often inconsistent surveys. The committee’s review suggests that, overall, monitoring efforts continue to fall short of providing the nation with the basic data that it needs to monitor disability and manage for the future.

DISABILITY RESEARCH

Fund a program of clinical, health services, social, behavioral, and other disability research that is commensurate with the need.

Since 1997, rehabilitation and disability research has made some gains at the federal level. Funding has increased modestly for the National Institute on Disability and Rehabilitation Research (NIDRR), the National Center for Medical Rehabilitation Research (NCMRR), and the Rehabilitation Research and Development Service of the Veterans Health Administration. Overall, however, disability research continues to be funded at levels inconsistent with the current and projected impact of disability on individuals, families, and communities. Spending remains highly skewed toward basic and clinical research, with inadequate support for research on the physical, social, and other environmental contributors to disability and insufficient attention to the evaluation of interventions to minimize activity limitations and participation restrictions. In addition to further research in these ar eas, another priority is the identification of better strategies to develop and bring to market improved assistive technologies and accessible mainstream technologies.

Increase the visibility and coordination of federally supported disability research.

Disability research continues to lack adequate visibility and recognition within federal research agencies. This report reiterates the call for actions to address this problem made in the 1997 report. Among other steps, it proposes that the U.S. Congress consider making NCMRR a full institute or freestanding center within the National Institutes of Health. A similar step would be the creation of an Office of Disability and Health in the director’s office at CDC to work with and support the Disability and Health Team in the Center for Birth Defects and Developmental Disabilities and to more fully integrate disability issues into CDC programs.

Inadequate coordination of disability research, highlighted in the 1997 IOM report, also remains a problem. With tighter federal budgets, the advantages of coordination—to avoid an insufficient emphasis on important issues as well as wasteful duplication—are even more important today than they were in 1997. The report recommends a more active role for the existing Interagency Committee on Disability Research in coordinating the identification and administration of high-priority, multiagency research.

ACCESS TO HEALTH CARE AND SUPPORT SERVICES

Improve the accessibility of health care facilities and strengthen implementation of the provisions of the ADA related to health care facilities.

Accessible environments are a matter of equity for adults and children with disabilities. People with mobility, sensory, or other impairments should expect that health care facilities will be accessible. Instead, these facilities often present significant barriers to the receipt of timely, high-quality health care.

Both public and private groups can act to improve access to health care facilities and equipment and strengthen the levels of awareness of and compliance with the relevant provisions of the ADA. The U.S. Department of Justice should continue to vigorously pursue and publicize effective settlements and, if necessary, the litigation of complaints of accessibility violations by major health care institutions. It should also issue and widely disseminate guidelines for health care professionals and executives that describe the government’s expectations for compliance with the ADA. Likewise, the Joint Commission and other organizations that accredit health care organizations or that set federal program participation conditions should consider a facility’s level of compliance with federal accessibility standards and guidelines in their accreditation and participation decisions. In addition, the Architectural and Transportation Barriers Compliance Board (Access Board) should develop standards for accessible medical equipment to be supported with technical assistance, dissemination, and enforcement by appropriate federal agencies.

Reduce barriers to health insurance for people with disabilities.

Although people with disabilities are slightly more likely than others to have health insurance, especially through public programs, access to insurance is not universal, especially among working-age individuals. To reduce the hardships facing many working-age people who have newly qualified for Social Security Disability Insurance (SSDI), the U.S. Congress should reduce or eliminate the waiting period between the time SSDI benefits start and eligibility for Medicare. The U.S. Congress and federal administrative agencies should also continue to test modifications in SSDI and Supplemental Security Income rules that would encourage people who are able to return to work to do so without losing Medicare or Medicaid coverage.

One persistent problem with government efforts to promote competition among managed care and other health plans and to enroll people with disabilities in such plans is that the methods that Medicare and Medicaid use to pay health plans have overpaid for individuals with few health conditions and underpaid for people with serious health conditions or disabilities. Despite recent improvements in Medicare’s method for the risk adjustment of health plan payments, it remains financially more attractive for health plans to seek low-risk beneficiaries than to provide efficient, high-quality care to people with chronic health conditions and disabilities. The U.S. Congress should continue to support the research needed to improve risk adjustment methods.

Make needed assistive services and technologies more available to people with disabilities.

Research suggests that assistive technologies are playing important and increasingly prevalent roles in the lives of people with disabilities. Research agencies should further investigate strategies that can counter the current weak incentives for developing better assistive technologies and bringing them to market.

The committee recommends that policy makers eliminate or modify the “in-home-use” requirement for Medicare coverage of durable medical equipment and revise coverage criteria to consider the contribution of a technology to an individual’s independence and participation in community life, including work. Policy makers should also investigate new approaches for supplying covered technologies and providing timely and appropriate repairs to equipment that is damaged or not working.

Promote models of coordinated chronic care and other strategies for improving the transition of young people from pediatric to adult health care.

For many young people with disabilities, the transition from pediatric to adult health care brings many challenges. These challenges include the fragmented organization and financing of health care, dysfunctional provider reimbursement methods, and the limited adoption of sophisticated information technology to support information exchange among the generalists and the specialists who care for young people with complex health conditions.

The convergence of the medical home model of care for children with special health care needs and the chronic care model designed primarily with adults in mind offers great promise. If the principles and practices underlying these models were widely adopted, young people would be much more likely to receive the comprehensive assessments, guidance, and services that correspond to the recommendations of professional societies for managing the transition from pediatric to adult health care. Among other steps needed to support the successful movement of young people from pediatric to adult care, the U.S. Congress should extend Medicaid and State Children’s Health Insurance Program coverage through age 21 for all beneficiaries with chronic conditions or disabilities and should specify that program benefits cover appropriate transition assessment, coordination, and management services for these young people.

PUBLIC AND PROFESSIONAL EDUCATION

Develop educational programs, evidence-based reviews, practice guidelines, and other materials to support health professionals in caring for people with disabilities.

Health care professionals are not necessarily well informed about the primary health care needs of people with disabilities, the prevention and management of secondary health conditions, the challenges that adults face in aging with disabilities, and the transition of young people with disabilities from pediatric to adult services. Among other actions, this report recommends strengthening education in chronic illness and disability man agement in curricula for health care professionals, including education on the specific topics of secondary conditions and aging with disability.

To increase awareness of the secondary conditions and premature aging associated with many chronic health conditions and disabilities, the report also encourages the development of systematic reviews of existing evidence, and the identification of knowledge gaps. These reviews can be used as the basis for collaborative efforts by professional societies, people with disabilities, and others to formulate evidence-based guidelines clinical practice guidelines, guides for consumers, and other educational materials.

Launch a national public health campaign to increase public and health care professional awareness of assistive and accessible technologies.

Health care professionals also face difficulties in keeping abreast of developments in assistive technologies and their effective use. People with disabilities may themselves be unaware of technologies that could help them lead easier and more independent lives. The report recommends that the CDC collaborate with other public and private groups to launch a national campaign to increase public and health care professional awareness and acceptance of assistive and accessible technologies that can benefit people with disabilities.

CHOOSING THE FUTURE FOR DISABILITY IN AMERICA

Given the demographic, societal, and disability trends outlined above and discussed in detail within this report, a critical question is: how will Americans individually and collectively make the choices that will help define the future of disability? That is, 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 disability, and reduce environmental barriers for people with existing impairments? The record of the past 17 years offers reasons for serious concern, especially given the cost projections for public programs that are critical to people with disabilities.

The trade-offs or choices that Americans make 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 only represent 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 family members who do. 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 at later stages in their own lives.

This report underscores the growing evidence that disability is not an unavoidable consequence of injury and chronic disease but is substantially affected by the actions that society takes—in the public arena and in commerce and other private domains. Ultimately, the future of disability in America rests with Americans.

COMPLETE LIST OF RECOMMENDATIONS

Disability Monitoring

Recommendation 2.1: The National Center for Health Statistics, the U.S. Census Bureau, the Bureau of Labor Statistics, and other relevant government units involved in disability monitoring should adopt the International Classification of Functioning, Health and Disability (ICF) as their conceptual framework and should actively promote continued refinements to improve the framework’s scope and utility for disability monitoring and research. The Interagency Subcommittee on Disability Statistics of the Interagency Committee on Disability Research should coordinate the work of these agencies to develop, test, validate, and implement new measures of disability that correspond to the components of the ICF, consistent with public policy priorities.

Recommendation 2.2: The National Center for Health Statistics, in collaboration with other relevant federal agencies, should continue to improve the scope and quality of data—including longitudinal or panel data—on disability, its causes, and its consequences. These improved data sources should serve as the cornerstone of a new national disability monitoring system.

Health Care Transitions, Secondary Conditions, and Aging with Disability

Recommendation 4.1: To improve the transition of young people with disabilities from pediatric to adult health care, policy makers, professional societies, public and private payers, and educators should work to

  • align and strengthen incentives in public and private health care programs to support coordinated care and transition planning;
  • expand the use of integrated electronic medical records for chronic disease management and during the transition of young people with disabilities from pediatric to adult health care; and
  • expand chronic care education in pediatric and internal medicine residency programs and add skills in the management of individuals with chronic health care needs to specialty board requirements.

Recommendation 4.2: To support the successful transition of young people with disabilities from pediatric to adult health care and independent living, the U.S. Congress should

  • extend Medicaid and State Children’s Health Insurance Program (SCHIP) coverage through age 21 for children with disabilities and specify that Medicaid and SCHIP benefits cover transition assessments, coordination, and management services for these young people;
  • fund the U.S. Maternal and Child Health Bureau to expand its work to develop and implement medical home and other services for young people with special health care needs who are over age 21 and who need continued transition support;
  • revise the Ticket to Work program by lowering the eligibility age to 16 years and directing the U.S. Department of Education and the Social Security Administration to develop guidance for the coordination of Ticket to Work services with the transition services and supports provided under the Individuals with Disabilities Education Act; and
  • direct the Centers for Disease Control and Prevention to work with other relevant agencies to examine opportunities for the monitoring of transitions through additions to state and national youth surveys or other cross-sectional and longitudinal data collection efforts.

Recommendation 5.1: The U.S. Congress should direct and fund the Agency for Healthcare Research and Quality so that it may take the lead in

  • evaluating the evidence base to support the development of clinical practice guidelines, quality goals, and monitoring standards for the prevention and management of secondary health conditions among people with disabilities and for the monitoring and management of people aging with disability;
  • evaluating the evidence base about environmental contributors to secondary health conditions; and
  • identifying research gaps and directions for further research on secondary health conditions and aging with disability.

Recommendation 5.2: As part of broader efforts to improve the quality of care provided to people with disabilities, health care professionals, educators, people with disabilities, and their family members should work together to

  • develop, disseminate, and apply guidelines for the prevention and management of secondary conditions and for the monitoring and care of people aging with disability;
  • design educational modules and other curriculum tools for all relevant types of health care professionals and all levels of education; and
  • develop competency standards for these educational programs.

Environmental Barriers

Recommendation 6.1: Given the limited research on the effects of environmental factors on disability, the National Institute on Disability and Rehabilitation Research, the National Institutes of Health, the Veterans Health Administration, the Centers for Disease Control and Prevention, and other relevant agencies should collaborate to develop a program of research in this area. As part of developing such a program, these agencies should

  • organize a symposium to engage people with disabilities, relevant governmental agencies, researchers, methodologists, and other interested parties in a collaborative process to recommend priorities for research on environmental factors, as defined in the International Classification of Functioning, Disability and Health;
  • apply these priorities in a plan for outcomes research to investigate the relative effects of different aspects of the environment on disability; and
  • intensify current efforts to improve epidemiological, observational, and experimental measures and methods to assess the effects of specific environmental features on independence, participation, and quality of life over the short term and long term for people with disabilities.

Recommendation 6.2: To improve the accessibility of health care facilities and equipment and to strengthen the awareness of and compliance with the provisions of the Americans with Disabilities Act related to accessible health care facilities,

  • the U.S. Department of Justice should continue to vigorously pursue and publicize effective settlements and litigation (if necessary) of complaints of accessibility violations in major health care institutions;
  • the U.S. Department of Justice should issue and widely disseminate guidelines for health care providers that describe expectations for compliance with the accessibility provisions of the act; and
  • the Joint Commission and other organizations that accredit or set federal program participation conditions for health care organizations should explicitly consider compliance with federal accessibility standards and guidelines in making their accreditation and participation decisions.

Recommendation 6.3: The U.S. Congress should direct the Architectural and Transportation Barriers Compliance Board (the Access Board)

  • to develop standards for accessible medical equipment to be sup ported with technical assistance and with dissemination and enforcement efforts by the appropriate federal agencies and
  • to collaborate with the U.S. Department of Veterans Affairs, groups representing people with disabilities, and other relevant experts to assess whether the accessibility standards developed by the Access Board are appropriate for health care facilities serving people with disabilities and an aging population.

Assistive and Accessible Technologies

Recommendation 7.1: Federal agencies that support research on assistive technologies should collaborate on a program of research to improve strategies to identify, develop, and bring to market new or better assistive technologies for people with disabilities. Such research should involve consumers, manufacturers, medical and technical experts, and other relevant agencies and stakeholders.

Recommendation 7.2: To extend the benefits of accessibility provided by existing federal statutes and regulations, the U.S. Congress should direct the Architectural and Transportation Barriers Compliance Board (the Access Board) to collaborate with relevant public and private groups to develop a plan for establishing accessibility standards for important mainstream and general use products and technologies. The plan should

  • propose criteria and processes for designating high-priority product areas for standard setting;
  • identify existing public or private standards or guidelines that might be useful in setting standards; and
  • include medical equipment as an initial priority area.

Recommendation 7.3: The Centers for Disease Control and Prevention, working with the National Institute on Disability and Rehabilitation Research, should launch a major public health campaign to increase public and health professional awareness and acceptance of assistive technologies and accessible mainstream technologies that can benefit people with different kinds of disabilities.

Recommendation 8.1: The U.S. Congress should support continued research and data collection efforts to

  • evaluate and improve the accuracy and fairness of methods of risk adjusting payments to health plans serving Medicare and Medicaid beneficiaries with disabilities;
  • assess how these methods affect the quality of care for people with disabilities, including those enrolled in special needs plans; and
  • evaluate differences in the risk adjustment methods that state Medicaid programs use to pay health plans that enroll people with disabilities.

Recommendation 8.2: To improve access to health insurance for people with disabilities, the U.S. Congress should

  • adopt a plan to reduce or eliminate the 24-month waiting period for Medicare eligibility for people who have newly qualified for Social Security Disability Insurance;
  • encourage continued testing of methods to reduce disincentives in public insurance programs for people with disabilities to return to work; and
  • direct states to limit recertification and reenrollment for the State Children’s Health Insurance Program to no more than once a year for children with disabilities.

Recommendation 9.1: The U.S. Congress and the U.S. Department of Health and Human Services should begin a process of revising Medicare and Medicaid laws and regulations and other relevant policies to make needed assistive services and technologies more available to people with disabilities and to put more emphasis on beneficiaries’ functional capacities, quality of life, and ability to participate in work, school, and other areas of community life. Priorities include

  • eliminating or modifying Medicare’s “in-home-use” requirement for durable medical equipment and revising coverage criteria to consider the contribution of these devices and equipment to an individual’s independence and participation in community life;
  • evaluating new approaches for supplying assistive technologies (such as time-limited rentals and recycling of used equipment) and providing timely and appropriate equipment repairs; and
  • continuing research to assess and improve the appropriateness, quality, and cost-effectiveness of the assistive services and technologies provided to people with disabilities.

Organizing and Financing Disability Research

Recommendation 10.1: Federal agencies should invest in a coordinated program to develop, test, and disseminate promising interventions, practices, and programs to minimize activity limitations and participation restrictions and improve the quality of life of people with disabilities.

Recommendation 10.2: To support a program of disability research that is commensurate with the need for better knowledge about all aspects of disability at the individual and the societal levels, the U.S. Congress should increase the total amount of public funding provided for disability research. To strengthen the management and raise the profile of this research, the U.S. Congress should also consider

  • elevating the National Center for Medical Rehabilitation Research to the status of a full institute or freestanding center within the National Institutes of Health with its own budget;
  • creating an Office of Disability and Health in the Director’s Office at the Centers for Disease Control and Prevention (CDC) to promote the integration of disability issues into all CDC programs; and
  • directing the U.S. Department of Education to support the National Institute on Disability and Rehabilitation Research in continuing to upgrade its research review process and grants program administration.

Recommendation 10.3: To facilitate cross-agency strategic planning and priority setting around disability research and to expand efforts to reduce duplication across agencies engaged in disability research, the U.S. Congress should authorize and fund the Interagency Committee on Disability Research to

  • undertake a government-wide inventory of disability research activities using the International Classification of Functioning, Disability and Health;
  • identify underemphasized or duplicative areas of research;
  • develop priorities for research that would benefit from multiagency collaboration;
  • collaborate with individual agencies to review, fund, and administer this research portfolio; and
  • appoint a public-private advisory committee that actively involves people with disabilities and other relevant stakeholders to provide advice on the activities described above.