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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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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The Future of Disability in America 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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The Future of Disability in America   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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The Future of Disability in America   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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The Future of Disability in America 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.