Call to Action: IOM Assessment of the Future of Disability

More than 40 million Americans live with a disability today. And unless the United States adopts smarter policies soon, the future will see far more people living with disabilities, many of them facing unnecessary restrictions that could be minimized by acting now. That’s according to a recent report prepared by the Institute of Medicine (IOM) in response to a request from the CDC, the Department of Education and the National Institutes of Health to analyze the current state of disability in America and provide recommendations for improvement.

The report stresses that many of the limitations currently imposed by injury and chronic disease could be eliminated by making wiser choices in regards to working conditions, health care, transportation, housing and other environmental factors. Decisions that the United States makes over the coming years will affect the number of people able to live independently, quality of life for people with disabilities and their families, and worker productivity.

The IOM issued “Disability in America” in 1991 and “Enabling America” in 1997. Both reports emphasized both the national importance of addressing disability and that disability “results from interactions with the physical and social environment.” Although there has been some progress since those reports were issued, many of their recommendations have yet to be adopted. The ADA has not lived up to its promise, and people with disabilities still encounter many physical and other barriers — even in hospitals and doctors’ offices.

The report makes the following recommendations:

• The federal agencies involved in disability monitoring, including the National Center for Health Statistics, the Census Bureau and the Bureau of Labor Statistics, should adopt the World Health Organization’s International Classification of Functioning, Disability and Health (ICF) as their conceptual framework. This standardization would improve the clarity and comparability of research findings and thus strengthen the knowledge base that guides public policies and health practices.

• Create a comprehensive disability monitoring system to help the United States more accurately monitor disability and provide useful data to policymakers.

• Increase public funding to support research programs at the National Institute on Disability and Rehabilitation Research, the National Center for Medical Rehabilitation Research, the Veterans Health Administration and other similar agencies.

• Enhance the visibility of federal rehabilitation and disability research within federal research agencies and elevate the National Center for Medical Rehabilitation Research to the status of a full institute or free-standing center within the NIH.

• Agencies engaged in disability research should coordinate their activities to reduce duplication of effort and identify neglected but important issues.

• Federal funding agencies should invest more in the development, testing and dissemination of promising interventions that would help people maintain their independence and participate in their communities.

• Policymakers should eliminate or modify Medicare’s “in-home-use” requirement, which stops many people from obtaining scooters and wheelchairs that would enable them to participate more fully in their communities (including remaining employed).

• The Department of Justice should strengthen its enforcement of the ADA and offer providers more guidance about their responsibilities under the ADA.

• Congress should eliminate or reduce the current 24-month waiting period for Medicare that affects most people who qualify for Social Security Disability Insurance (SSDI), as many have no health insurance in the meantime.

• Congress and the administrative agencies should continue testing modifications in SSDI and Supplemental Security rules to allow people to work without losing their Medicare or Medicaid coverage.

• To address the treatment gaps that often occur as young people transition from pediatric to adult health care, the government should promote the medical home and chronic care models of care, including making any necessary changes in Medicaid and the State Child Health Insurance Program.

• Educators, practitioners and consumers should develop curricula and competency standards to better prepare professionals to care for people with disabilities.

• Federal agencies should launch a major public information campaign to increase professional and consumer awareness and acceptance of assistive and accessible mainstream technologies.

• The Agency for Healthcare Research and Quality should take the lead in developing evidence reviews that could be used as the basis for professionals, consumer organizations and others to jointly develop clinical practice and consumer guidelines.

Pre-publication copies of The Future of Disability in America are available from the National Academies Press (telephone 202/334-3313 or 1-800-624-6242; website http://www.nap.edu/