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The Future of Disability in America
A
Study Activities
In late 2004, at the request of the Centers for Disease Control and Prevention (CDC), the Institute of Medicine (IOM) began a study to review progress and developments since the publication of the IOM’s 1991 report Disability in America and its 1997 report Enabling America. The study was to identify continuing gaps in disability science and propose steps to strengthen the evidence base for public and private actions to reduce the impact of disability and related conditions on individuals and society in the United States. The assessment of principles and scientific evidence for disability policies and services was to take international perspectives and models into account. (Discussions with CDC clarified that this assessment should focus primarily on international efforts to develop a conceptual framework and classification scheme for disability.)
The study’s statement of task identified several specific topics for consideration, including
methodological and policy issues related to the definition, measurement, and monitoring (surveillance) of disability and health over time;
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trends in the amount, types, and causes of disability;
aging with disability and secondary health conditions;
transitions from child/adolescent to adult services and community participation;
role of assistive technologies and physical environments in increasing participation in society (e.g., through employment, community-based living) of people with disabilities;
selected questions related to the financing of health care services, including payment for assistive technologies and risk adjustment of managed care and provider payments; and
directions for research.
For administrative reasons, the study began with a limited set of tasks and the charge to conduct an invitational workshop and prepare a workshop summary report that did not include conclusions and recommendations. In planning the workshop, which was held in August 2005, one objective was to develop information that would be useful in the second phase of the project, which would result in a report with conclusions and recommendations. As discussions about the study progressed, CDC enlisted support for the second phase of the study from the National Institute on Disability and Rehabilitation Research (Department of Education) and the National Center for Medical Rehabilitation Research (National Institutes of Health).
To oversee the workshop phase of the study, the IOM appointed a 10-member committee. The table of contents for the resulting workshop report is included in Appendix B. The IOM added four additional committee members as part of the study’s second phase.
The study committee met five times between August 2005 and September 2006. In addition to the August 2005 workshop, which provided background on the first four topics, the committee conducted two public meetings and commissioned five background papers (which appear as appendixes to the report). The agendas of the workshop and other public meetings are included below. The committee submitted its report for review under procedures of the National Research Council in December 2006, and the report was released in April 2007.
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The Future of Disability in America
INSTITUTE OF MEDICINE WORKSHOP ON DISABILITY IN AMERICA: AN UPDATE
Keck Center of the National Academies
August 1, 2005
8:30
Welcomes and Introductions
Alan Jette, Ph.D., Chair
Institute of Medicine Committee on Disability in America
Jose Cordero, M.D.
Director, National Center on Birth Defects and Development
Centers for Disease Control and Prevention
Steven James Tingus, M.S.
Director, National Institute on Disability and Rehabilitation Research
Michael Weinrich, M.D.
National Center for Medical Rehabilitation Research
8:45
Disability Concepts, Models, and Measures
Issues and Questions Involving Adults
Gale Whiteneck, Ph.D.
Director of Research
Craig Hospital
Issues and Questions Involving Children and Adolescents
Rune Simeonsson, Ph.D.
Professor of Education
University of North Carolina
Research on Environmental Factors
Julie Keysor, Ph.D.
Assistant Professor of Physical Therapy
Boston University Sargent College of Health and
Rehabilitation Sciences
Discussion
10:20
Break
10:45
Trends in Disability
Trends in Disability in Late Life
Vicki Freedman, Ph.D.
Professor of Health Systems and Policy
School of Public Health
University of Medicine and Dentistry of New Jersey
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The Future of Disability in America
Trends in Disability in Midlife
Jay Bhattacharya, Ph.D.
Assistant Professor of Medicine
Center for Primary Care and Outcomes Research
Stanford University
Trends in Disability in Early Life
Ruth E. K. Stein, M.D.
Professor of Pediatrics
Albert Einstein College of Medicine/Children’s Hospital at Montefiore
Discussion
Noon
Lunch
1:00
Aspects of Disability Across the Life Span
Risk Factors for Disability in Late Life
Jack Guralnik, M.D., Ph.D.
Chief, Epidemiology and Demography Section
National Institute on Aging
Transitions for Adolescents with Disabilities
John G. Reiss, Ph.D.
Chief, Division of Policy and Program Affairs
Institute for Child Health Policy
University of Florida College of Medicine
Discussion
2:00
Secondary Health Conditions: Concepts, Data, and Examples (Part I)
Overview
Margaret A. Turk, M.D.
Professor of Physical Medicine and Rehabilitation
State University of New York Upstate Medical University
Secondary Health Conditions and Aging with Disability:
Consumer Perspective
June Kailes, M.S.W.
Disability Policy Consultant
Effects of Exercise on Specific Secondary Conditions
James H. Rimmer, Ph.D.
Director, Center on Health Promotion Research for Persons with Disabilities
University of Illinois at Chicago
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Discussion
3:30
Break
3:50
Secondary Health Conditions (Part II)
Secondary Conditions with Spinal Cord Injury
William A. Bauman, M.D.
Professor of Medicine and Rehabilitation Medicine
Mount Sinai School of Medicine
Depression as a Secondary Condition in Adults with Disability
Bryan Kemp, Ph.D.
Professor of Medicine and Psychology
University of California, Irvine
Preventing the Progression of Secondary Conditions with
Developmental Disabilities
Tom Seekins, Ph.D.
Director
University of Montana Rural Institute
Discussion
Adjourn
*****
INSTITUTE OF MEDICINE COMMITTEE ON DISABILITY IN AMERICA: A NEW LOOK
Keck Center of the National Academies
October 5, 2005, Open Session
8:30
Welcomes and Introductions
8:45
Discussion with Study Sponsors
Mark Swanson, M.D.
Team Leader, Disability and Health Team
National Center on Birth Defects and Development
Centers for Disease Control and Prevention
Steven James Tingus, M.S.
Director, National Institute on Disability and Rehabilitation Research
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Michael Weinrich, M.D.
Director, National Center on Medical Rehabilitation Research
10:45
Adjourn open session
*****
INSTITUTE OF MEDICINE COMMITTEE ON DISABILITY IN AMERICA: A NEW LOOK
Keck Center of the National Academies
January 9, 2006
10:30
Welcome and Introductions
U.S. Department of Justice
Irene Bowen, J.D.
Deputy Chief, Disability Rights Section, Civil Rights Division
Veterans Health Administration
Robert Ruff, M.D., Ph.D.
Acting Director, Rehabilitation Research & Development Services
U.S. Department of Health and Human Services
Margaret Giannini, M.D.
Director, Office on Disability
Noon
Lunch
1:00
Welcome and Introductions
American Association of People with Disabilities
Andrew J. Imparto
President and CEO
National Alliance for Caregiving
Gail Gibson Hunt
President and CEO
National Coalition for Assistive and Rehabilitation Technology
Rita Hestak
President
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1:45
American Foundation for the Blind
Mark Richert
Director of Public Policy
Paralyzed Veterans of America
Fred Cowell
Health Policy Analyst
United Cerebral Palsy
Stephen Bennett
President and CEO
2:30
Break
3:00
American Academy of Pediatrics
Paul H. Lipkin, M.D.
Chairperson, AAP Council on Children with Disabilities
American Academy of Physical Medicine and Rehabilitation
Steve Gnatz, M.D., M.H.A.
President
American Physical Therapy Association
Ken Harwood, P.T., Ph.D.
Director, Division of Practice and Research
Rehabilitation Engineering and Assistive Technology Society of North America
Rory A. Cooper, Ph.D.
President
Adjourn
The following organizations provided written statements: AARP Public Policy Institute, American Spinal Injury Association, and American Association on Mental Retardation.
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