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The Future of Disability in America (2007)

Chapter: Appendix A Study Activities

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Suggested Citation:"Appendix A Study Activities." Institute of Medicine. 2007. The Future of Disability in America. Washington, DC: The National Academies Press. doi: 10.17226/11898.
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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;

Suggested Citation:"Appendix A Study Activities." Institute of Medicine. 2007. The Future of Disability in America. Washington, DC: The National Academies Press. doi: 10.17226/11898.
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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.

Suggested Citation:"Appendix A Study Activities." Institute of Medicine. 2007. The Future of Disability in America. Washington, DC: The National Academies Press. doi: 10.17226/11898.
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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

Suggested Citation:"Appendix A Study Activities." Institute of Medicine. 2007. The Future of Disability in America. Washington, DC: The National Academies Press. doi: 10.17226/11898.
×

 

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

Suggested Citation:"Appendix A Study Activities." Institute of Medicine. 2007. The Future of Disability in America. Washington, DC: The National Academies Press. doi: 10.17226/11898.
×

 

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

Suggested Citation:"Appendix A Study Activities." Institute of Medicine. 2007. The Future of Disability in America. Washington, DC: The National Academies Press. doi: 10.17226/11898.
×

 

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

Suggested Citation:"Appendix A Study Activities." Institute of Medicine. 2007. The Future of Disability in America. Washington, DC: The National Academies Press. doi: 10.17226/11898.
×

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.

Suggested Citation:"Appendix A Study Activities." Institute of Medicine. 2007. The Future of Disability in America. Washington, DC: The National Academies Press. doi: 10.17226/11898.
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Suggested Citation:"Appendix A Study Activities." Institute of Medicine. 2007. The Future of Disability in America. Washington, DC: The National Academies Press. doi: 10.17226/11898.
×
Page 386
Suggested Citation:"Appendix A Study Activities." Institute of Medicine. 2007. The Future of Disability in America. Washington, DC: The National Academies Press. doi: 10.17226/11898.
×
Page 387
Suggested Citation:"Appendix A Study Activities." Institute of Medicine. 2007. The Future of Disability in America. Washington, DC: The National Academies Press. doi: 10.17226/11898.
×
Page 388
Suggested Citation:"Appendix A Study Activities." Institute of Medicine. 2007. The Future of Disability in America. Washington, DC: The National Academies Press. doi: 10.17226/11898.
×
Page 389
Suggested Citation:"Appendix A Study Activities." Institute of Medicine. 2007. The Future of Disability in America. Washington, DC: The National Academies Press. doi: 10.17226/11898.
×
Page 390
Suggested Citation:"Appendix A Study Activities." Institute of Medicine. 2007. The Future of Disability in America. Washington, DC: The National Academies Press. doi: 10.17226/11898.
×
Page 391
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The future of disability in America will depend on how well the U.S. prepares for and manages the demographic, fiscal, and technological developments that will unfold during the next two to three decades.

Building upon two prior studies from the Institute of Medicine (the 1991 Institute of Medicine's report Disability in America and the 1997 report Enabling America), The Future of Disability in America examines both progress and concerns about continuing barriers that limit the independence, productivity, and participation in community life of people with disabilities. This book offers a comprehensive look at a wide range of issues, including the prevalence of disability across the lifespan; disability trends the role of assistive technology; barriers posed by health care and other facilities with inaccessible buildings, equipment, and information formats; the needs of young people moving from pediatric to adult health care and of adults experiencing premature aging and secondary health problems; selected issues in health care financing (e.g., risk adjusting payments to health plans, coverage of assistive technology); and the organizing and financing of disability-related research.

The Future of Disability in America is an assessment of both principles and scientific evidence for disability policies and services. This book's recommendations propose steps to eliminate barriers and strengthen the evidence base for future public and private actions to reduce the impact of disability on individuals, families, and society.

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