Contact: Maureen O’Leary
The National Academies
WASHINGTON — Although the Americans with Disabilities Act (ADA) has helped increase awareness of barriers faced by people with disabilities, and advances in science and engineering have led to better assistive technologies that make it easier for individuals to lead productive, independent lives, outdated regulations too often impede access to health care coverage and assistive devices for many who need them, says a new report by the Institute of Medicine.
The report calls on Congress and appropriate federal agencies to improve decision making about what and who Medicare and Medicaid will cover and to eliminate waiting periods for qualified individuals to receive Medicare coverage. The federal government should find ways to ease restrictions that prevent people from getting effective assistive services and technologies to help them live as independently as possible and participate in work and other activities outside the home.
“The number of Americans who have disabilities will grow significantly in the next 30 years as the baby boom generation enters late life. If one considers people who now are disabled, those likely to develop a future disability, and people who are or will be affected by the disabilities of family members or others close to them, it becomes clear that disability will eventually affect the lives of most Americans,” said Alan M. Jette, director, Health and Disability Research Institute, Boston University School of Public Health, Boston, and chair of the committee that wrote the report. “Increasingly, scientific evidence reveals that disability results, in large part, from actions society and individuals take. The sobering reality, however, is that over the past two decades, far too little progress has been made in adopting major public policy and practice advances to reduce disability in America.”
Currently, more than 40 million Americans – at least one in seven – have physical mobility, sensory, or other impairments or limitations. Since IOM’s previous reports in 1991 and 1997 that highlighted disability as a pressing public health issue, there has been growing recognition that disability is not inherent in individuals, but rather is the result of interactions between people and their physical and social environments. Many aspects of the environment contribute to limitations associated with disability — for example, inaccessible transportation systems and workplaces, restrictive health insurance policies, and telecommunications and computer technologies that do not consider people with vision, hearing, or other disabilities.
The ADA — and other policies aimed at reducing barriers for people with disabilities — has helped to increase recognition of environmental obstacles, but its implementation and enforcement have often been disappointing, the committee said. Ironically, even within health care facilities, people with disabilities encounter equipment and surroundings that are not designed to accommodate their needs — for example, examination tables and weight scales that are difficult for people in wheelchairs to use. Information materials for people with vision or hearing loss are frequently limited, as well.
The committee said it was encouraging to find that in older adults, the chances of having certain kinds of activity-limiting disabilities have declined during the last two decades. However, data for younger and middle-aged adults suggest an increasing risk for disability and for conditions that contribute to disability – notably, physical inactivity, diabetes, and obesity. These trends raise concerns that the next generation of people entering late life may experience more disability than the current population of seniors.
Steps needed to ensure that the growing population of American with disabilities is able to lead full lives and avoid lost productivity include the modification of Medicare’s “in home use” requirement for durable medical equipment, for example, a wheelchair or scooter. Current regulations stipulate that equipment must be “appropriate for use in the home,” which has been interpreted to mean a device should not be covered if it would be used only outside the home, such as an item for use in an office. Policies may also keep people from obtaining equipment that is safe and durable to use for getting around outside as well as inside the home. Other needed steps are the evaluation of new approaches for supplying assistive equipment, like renting or recycling used equipment, and rethinking narrow and outdated “medical necessity” rules that do not reflect the current emphasis on promoting independence and community integration for people with disabilities.
In addition, government at all levels should support continued research to evaluate and improve the methods used for determining fair payments for health services. These methods should not provide incentives for health plans to avoid people with disabilities, and they should encourage the coverage of care needed to manage chronic health conditions. Overall, policymakers should increase support for research on disability, which is seriously underfunded, considering the impact of disability on individuals, families, and communities.
To improve health care coverage for working-age people with disabling health conditions, Congress should eliminate the two-year waiting period for Medicare eligibility for those who are receiving Social Security Disability Insurance (SSDI). This waiting period is a serious hardship for individuals who have already qualified for disability insurance because they have a serious medical condition that precludes working. Officials also should test modifications in SSDI and other policies that would encourage people who are able to return to work to do so without losing their Medicare or Medicaid coverage, the report says. Regarding access to Medicaid for children with disabilities, Congress should extend Medicaid and other public health program coverage from age 18 through 21, to help young people with disabilities successfully transition from pediatric to adult health care and independent living.
The U.S. Department of Justice should continue to vigorously pursue and publicize settlements and litigation of violations in health care institutions and should issue guidelines for health care professionals and institutions that describe expectations for compliance with the ADA. Compliance with federal accessibility standards and guidelines should be an explicit factor in the accreditation of hospitals and clinics.
The study was sponsored by the Centers for Disease Control and Prevention, National Institute on Disability and Rehabilitation Research, and National Center for Medical Rehabilitation Research. Established in 1970 under the charter of the National Academy of Sciences, the Institute of Medicine provides independent, objective, evidence-based advice to policymakers, health professionals, the private sector, and the public. The National Academy of Sciences, National Academy of Engineering, Institute of Medicine, and National Research Council make up the National Academies. A committee roster follows.
Pre-publication copies of The Future of Disability in America are available from the National Academies Press; tel. 202-334-3313 or 1-800-624-6242 or on the Internet at http://www.nap.edu. Reporters may obtain a copy from the Office of News and Public Information (contacts listed above).
[ This news release and report are available at http://national-academies.org ]
INSTITUTE OF MEDICINE
Board on Health Sciences Policy
Committee on Disability in America
Alan M. Jette, Ph.D., P.T., M.P.H. (chair)
Health and Disability Research Institute, and
Professor of Health Policy and Management
Boston University School of Public Health
Elena M. Andresen, Ph.D.
Professor and Chief
Department of Health Services Research, Management, and Policy
University of Florida Health Sciences Center
Michael Chernew, Ph.D.
Department of Health Care Policy
Harvard Medical School
Dudley S. Childress, Ph.D.
Professor of Biomedical Engineering and Physical Medicine and Rehabilitation
McCormick School of Engineering and Feinberg School of Medicine
Vicki A. Freedman, Ph.D.
Department of Health Systems and Policy
School of Public Health
University of Medicine and Dentistry of New Jersey
Patricia Hicks, M.D.
Associate Director of Pediatrics, and
Continuity of Care Clinic
University of Texas Southwestern Medical Center
Lisa I. Iezzoni, M.D., M.Sc.
Professor of Medicine
Harvard Medical School, and
Institute for Health Policy
Massachusetts General Hospital
June Isaacson Kailes, M.S.W., L.C.S.W.
Center for Disability Issues and the Health Professions
Western University of Health Sciences
Playa del Rey, Calif.
Laura Mosqueda, M.D.
Director of Geriatrics and Professor of Family Medicine
Irvine School of Medicine
University of California
P. Hunter Peckham, Ph.D.
Donnell Professor of Biomedical Engineering and Orthopaedics
Case Western Reserve University
James Marc Perrin, M.D.
Professor of Pediatrics
Harvard Medical School and Massachusetts General Hospital
Margaret A. Turk, M.D.
Professor of Physical Medicine and Rehabilitation
Upstate Medical University
State University of New York
Gregg Vanderheiden, Ph.D.
Professor of Industrial and Biomedical Engineering
University of Wisconsin
John Whyte, M.D., Ph.D.
Moss Rehabilitation Research Institute
Marilyn J. Field, Ph.D.