THE FUTURE OF DISABILITY IN AMERICA
Marilyn J. Field and Alan M. Jette, Editors
THE NATIONAL ACADEMIES PRESS
Washington, D.C.
www.nap.edu
THE NATIONAL ACADEMIES PRESS
500 Fifth Street, N.W. Washington, DC 20001
NOTICE: The project that is the subject of this report was approved by the Governing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine. The members of the committee responsible for the report were chosen for their special competences and with regard for appropriate balance.
This study was supported by Contract No. 223-01-2460, Task Order 26, between the National Academy of Sciences and the Centers for Disease Control and Prevention; Contract No. ED-06-CO-0105 between the National Academy of Sciences and the U.S. Department of Education; and Contract No. N01-OD-4-2139, Task Order 164, between the National Academy of Sciences and the National Institutes of Health. Any opinions, findings, conclusions, or recommendations expressed in this publication are those of the authors and do not necessarily reflect the view of the organizations or agencies that provided support for the project.
Library of Congress Cataloging-in-Publication Data
The future of disability in America / Committee on Disability in America, Board on Health Sciences Policy ; Marilyn J. Field and Alan M. Jette, editors.
p. ; cm.
Includes bibliographical references and index.
ISBN-13: 978-0-309-10472-2 (hardback : alk. paper)
ISBN-10: 0-309-10472-6 (hardback : alk. paper) 1. People with disabilities--United States. 2. People with disabilities—Services for—United States. 3. Sociology of disability—United States. I. Field, Marilyn J. (Marilyn Jane) II. Jette, Alan M. III. Institute of Medicine (U.S.). Committee on Disability in America: a New Look.
[DNLM: 1. Disabled Persons—United States. 2. Age Factors—United States. 3. Chronic Disease—prevention & control—United States. 4. Comorbidity—United States. 5. Health Services Accessibility—trends—United States. 6. Insurance Coverage—United States.]
HV1553.F87 2007
362.40973—dc22
2007019908
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Copyright 2007 by the National Academy of Sciences. All rights reserved.
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Suggested citation: Institute of Medicine (IOM). 2007. The Future of Disability in America. Washington, DC: The National Academies Press.
THE NATIONAL ACADEMIES
Advisers to the Nation on Science, Engineering, and Medicine
The National Academy of Sciences is a private, nonprofit, self-perpetuating society of distinguished scholars engaged in scientific and engineering research, dedicated to the furtherance of science and technology and to their use for the general welfare. Upon the authority of the charter granted to it by the Congress in 1863, the Academy has a mandate that requires it to advise the federal government on scientific and technical matters. Dr. Ralph J. Cicerone is president of the National Academy of Sciences.
The National Academy of Engineering was established in 1964, under the charter of the National Academy of Sciences, as a parallel organization of outstanding engineers. It is autonomous in its administration and in the selection of its members, sharing with the National Academy of Sciences the responsibility for advising the federal government. The National Academy of Engineering also sponsors engineering programs aimed at meeting national needs, encourages education and research, and recognizes the superior achievements of engineers. Dr. Charles M. Vest is president of the National Academy of Engineering.
The Institute of Medicine was established in 1970 by the National Academy of Sciences to secure the services of eminent members of appropriate professions in the examination of policy matters pertaining to the health of the public. The Institute acts under the responsibility given to the National Academy of Sciences by its congressional charter to be an adviser to the federal government and, upon its own initiative, to identify issues of medical care, research, and education. Dr. Harvey V. Fineberg is president of the Institute of Medicine.
The National Research Council was organized by the National Academy of Sciences in 1916 to associate the broad community of science and technology with the Academy’s purposes of furthering knowledge and advising the federal government. Functioning in accordance with general policies determined by the Academy, the Council has become the principal operating agency of both the National Academy of Sciences and the National Academy of Engineering in providing services to the government, the public, and the scientific and engineering communities. The Council is administered jointly by both Academies and the Institute of Medicine. Dr. Ralph J. Cicerone and Dr. Charles M. Vest are chair and vice chair, respectively, of the National Research Council.
COMMITTEE ON DISABILITY IN AMERICA
ALAN M. JETTE (Chair), Director,
Health & Disability Research Institute and
Professor of Health Policy and Management,
Boston University School of Public Health
ELENA M. ANDRESEN, Professor and Chair,
Department of Epidemiology and Biostatistics, College of Public Health and Health Professions, University of Florida and
Research Health Scientist,
Department of Veterans Affairs, Gainesville
MICHAEL CHERNEW, Professor,
Department of Health Care Policy, Harvard Medical School (formerly at the University of Michigan)
DUDLEY S. CHILDRESS, Professor of Biomedical Engineering and Physical Medicine and Rehabilitation,
McCormick School of Engineering and Feinberg School of Medicine, Northwestern University
VICKI A. FREEDMAN, Professor,
Department of Health Systems and Policy, School of Public Health, University of Medicine and Dentistry of New Jersey
PATRICIA HICKS, Associate Professor of Pediatrics and Director,
Continuity of Care Clinic, University of Texas Southwestern Medical School, University of Texas Southwestern Medical Center at Dallas
LISA I. IEZZONI, Professor of Medicine,
Harvard Medical School, and
Associate Director,
Institute for Health Policy, Massachusetts General Hospital
JUNE ISAACSON KAILES, Associate Director and Adjunct Professor,
Center for Disability Issues and the Health Professions, Western University of Health Sciences
LAURA MOSQUEDA, Director of Geriatrics and Professor of Family Medicine,
University of California at Irvine School of Medicine
P. HUNTER PECKHAM, Donnell Professor of Biomedical Engineering and Orthopaedics,
Case Western Reserve University
JAMES MARC PERRIN, Professor of Pediatrics,
Harvard Medical School and Massachusetts General Hospital
MARGARET A. TURK, Professor,
Physical Medicine and Rehabilitation, State University of New York Upstate Medical University
GREGG VANDERHEIDEN, Professor of Industrial and Biomedical Engineering and Director,
Trace Research and Development Center, University of Wisconsin at Madison
JOHN WHYTE, Director,
Moss Rehabilitation Research Institute
Committee Consultants and Background Paper Authors
SCOTT BURRIS, James E. Beasley Professor of Law,
Temple University Beasley School of Law
H. STEPHEN KAYE, Associate Adjunct Professor,
Institute for Health & Aging, University of California at San Francisco
DAVID J. KNUTSON, Director,
Health Systems Studies, Park Nicollet Institute
GREGORY S. LIPTAK, Professor of Pediatrics,
State University of New York Upstate Medical University Hospital
KATHRYN MOSS, Research Fellow and Head,
Disability Research Section, The University of North Carolina at Chapel Hill
SARA ROSENBAUM, Hirsh Professor and Chair,
Department of Health Policy, George Washington University School of Public Health and Health Services
SANDRA ROSENBLOOM, Professor of Planning,
University of Arizona
KAREN PELTZ STRAUSS, Principal,
KPS Consulting
IOM Project Staff
MARILYN J. FIELD, Study Director
FRANKLIN BRANCH, Research Assistant
AFRAH J. ALI, Senior Program Assistant
LINDA MARTIN, IOM Scholar in Residence
BOARD ON HEALTH SCIENCES POLICY*
FRED H. GAGE (Chair),
The Salk Institute for Biological Studies
C. THOMAS CASKEY,
University of Texas–Houston Health Science Center
GAIL H. CASSELL,
Eli Lilly and Company
JAMES F. CHILDRESS,
University of Virginia
ELLEN WRIGHT CLAYTON,
Vanderbilt University Medical School
LINDA C. GIUDICE,
University of California at San Francisco
LYNN R. GOLDMAN,
Johns Hopkins Bloomberg School of Public Health
LAWRENCE O. GOSTIN,
Georgetown University Law Center
MARTHA N. HILL,
Johns Hopkins University School of Nursing
DAVID KORN,
Association of American Medical Colleges
ALAN LESHNER,
American Association for the Advancement of Science
JONATHAN D. MORENO,
University of Pennsylvania
E. ALBERT REECE,
University of Maryland School of Medicine
LINDA ROSENSTOCK,
University of California at Los Angeles
MICHAEL J. WELCH,
Washington University School of Medicine
OWEN N. WITTE,
University of California at Los Angeles
Board on Health Sciences Policy Staff
ANDREW M. POPE, Director
AMY HAAS, Board Assistant
GARY WALKER, Senior Financial Officer
Reviewers
This report has been reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise, in accordance with procedures approved by the National Research Council’s Report Review Committee. The purpose of this independent review is to provide candid and critical comments that will assist the institution in making its published reports as sound as possible and to ensure that the report meets institutional standards for objectivity, evidence, and responsiveness to the study charge. The review comments and draft manuscript remain confidential to protect the integrity of the deliberative process. We wish to thank the following individuals for their review of this report:
Barbara Altman, Disability Statistics Consultant, Rockville, Maryland
Michael L. Boninger, University of Pittsburgh School of Medicine
Howard Brody, University of Texas Medical Branch Institute for Medical Humanities
Cliff Brubaker, University of Pittsburgh School of Health and Rehabilitation Sciences
Gerben DeJong, National Rehabilitation Hospital
Linda P. Fried, Johns Hopkins Medical Institutions and Bloomberg School of Public Health
Walter R. Frontera, University of Puerto Rico School of Medicine
Laura N. Gitlin, Thomas Jefferson University College of Health Professions
Andrew J. Houtenville, Employment and Disability Institute, Cornell University
Corinne Kirchner, Consultant, New York, New York
Gloria Krahn, Oregon Institute on Disability and Development, Oregon Health and Science University
Richard Kronick, University of California at San Diego Division of Health Care Sciences
John L. Melvin, Jefferson Medical College of Thomas Jefferson University
Paul Newacheck, University of California at San Francisco Institute for Health Policy Studies and Department of Pediatrics
Judith Palfrey, Harvard Medical School and Children’s Hospital of Boston
Michelle Putnam, George Warren Brown School of Social Work, Washington University
Amy K. Rosen, Boston University Schools of Medicine and Public Heath and Bedford Veterans Affairs Medical Center
Jack Winters, Marquette University College of Engineering
Although the reviewers listed above have provided many constructive comments and suggestions, they were not asked to endorse the conclusions or recommendations, nor did they see the final draft of the report before its release. The review of this report was overseen by George W. Rutherford, University of California at San Francisco School of Medicine, and Elena O. Nightingale, Institute of Medicine. Appointed by the National Research Council and the Institute of Medicine, these individuals were responsible for making certain that an independent examination of this report was carried out in accordance with the institutional procedures and that all review comments were carefully considered. Responsibility for the final content of this report rests entirely with the authoring committee and the institution.
Acknowledgments
In preparing this report, the committee and project staff benefited greatly from the assistance of many individuals and groups. Important information and insights came from a public workshop and two public meetings that the committee organized to obtain information and perspectives from groups and individuals knowledgeable and concerned about disability and the factors that contribute to it. Appendix A includes the public meeting agendas. Appendix B lists the authors of papers presented at the public workshop in August 2005. The committee also appreciates the work of the project consultants and the authors of background papers that are included as appendixes to this report.
Our project officers and other staff at our sponsoring agencies were always helpful and supportive. We particularly appreciate the assistance of John Crews, Don Betts, and Sandra Coulberson of the Disability and Health Team at the Centers for Disease Control and Prevention; Arthur Sherwood, Ruth Brannon, Connie Pledger, and Steven James Tingus (National Institute on Disability and Rehabilitation Research) and Robert Jaeger (now at the National Science Foundation); and Michael Weinrich (National Center on Medical Rehabilitation Research).
In addition, the committee and staff received useful information and guidance on data, policy, and other issues from staff in a number of agencies, including Barbara Altman, Ellen Kramarow, Susan Jack, and Jennifer Madans at the National Center for Health Statistics; David Bacquis at the Access Board; Kenneth Curley at the U.S. Army’s Telemedicine and Advanced Technologies Research Center; Gil Devy at the National Science
Foundation; Patricia Dorn and Dennis Hancher at the U.S. Department of Veterans Affairs; Pamela Klein at the U.S. Census Bureau; Geoffrey Ling at the Defense Advanced Research Project Agency; Bill Long and Hongji Liu at the Centers for Medicare and Medicaid Services; Terence McMenamin at the Bureau of Labor Statistics; and Jeffrey Rhoades at the Agency for Health Care Policy and Research. An undoubtedly incomplete list of others whose assistance benefited the committee includes Mindy Aisen, United Cerebral Palsy Foundation; Susan Allen, Brown University; Rory Cooper and Mark Schmeler, University of Pittsburgh Medical Center; Marilyn Golden, Disability Rights Education and Defense Fund; Judy Hawkins, Gallaudet University; Karen Hendricks, American Academy of Pediatrics; Clayton Lewis, University of Colorado; Molly Follett Story, Human Spectrum Design; and Wendy Strobel, State University of New York at Buffalo.
The committee and project staff also appreciate the work of copy editor Michael Hayes. Within the Institute of Medicine, Michael McGeary was especially helpful, reflecting the work he has done as study director for projects on the social security disability decision-making process and the evaluation of veterans for disability benefits. We would also like to acknowledge the assistance of Lara Andersen, Judy Estep, Amy Haas, Bethany Hardy, Linda Kilroy, Bronwyn Schrecker, Sally Stanfield, Tyjen Tsai, and Gary Walker.
Preface
The 1991 Institute of Medicine (IOM) report Disability in America: Toward a National Agenda for Prevention identified disability as a significant social, public health, and moral issue that affects every individual, family, and community across America. This seminal volume articulated a series of comprehensive changes necessary to prevent disability in American society. Its recommendations included, for example, the development of new public and private leadership in disability prevention, the adoption of a unified conceptual framework to guide collaborative research, a national disability surveillance system, a comprehensive research program, coordinated approaches to delivering health and social services, and professional and public education to promote enlightened attitudes about disability. In 1997, the IOM followed with a second report, entitled Enabling America: Assessing the Role of Rehabilitation Science and Engineering, which critically evaluated the current federal programmatic efforts in science and engineering related to rehabilitation and disability. The 1997 IOM report called attention to the major shortcomings in the organization and administration of federal research programs pertinent to disability and rehabilitation. In doing so, it set forth a series of specific recommendations for more research, improved coordination, and a need for enhanced visibility of rehabilitation-related research within federal research programs.
Beginning in the fall of 2005, a dedicated group of clinicians, researchers, and consumers have collaborated in reviewing the nation’s progress on disability since 1991 and 1997. As chair, I have had the privilege of work-
ing with an outstanding group of individuals who, despite their diverse backgrounds and disparate perspectives, listened, probed, and discussed to reach a consensus around our major findings and recommendations presented in this report. Let me thank each of them, along with our IOM staff, particularly Marilyn Field, the project director, who did an outstanding job of guiding us in our work. I also wish to extend my gratitude to numerous other individuals and organizations (listed in Appendix A) who provided us with information, background papers, and other assistance in our work.
Our conclusions, as detailed in this report, entitled The Future of Disability in America, document the sobering reality that far too little progress has been made in the last two decades to prepare for the aging of the baby boom generation and to remove the obstacles that limit what too many people with physical and cognitive impairments can achieve. Disturbingly, many of the major recommendations contained in the two earlier reports have received little or no serious consideration, and they remain as germane today as they were in 1991 and 1997. This report therefore reiterates several still pertinent goals from the earlier reports and offers new recommendations that, if enacted promptly, could create a future in which Americans of all abilities and ages can participate fully in society.
After reviewing the state of disability in America, the committee concluded that although important progress has been made over the past 17 years in our understanding of disability, its causes, and strategies that can prevent its onset and progression, society must do more now before a crisis is upon us. The chapters in this report cover a broad range of critical topics, including the prevention of secondary conditions, the role of technology and universal design, selected issues in health care organization and financing, as well as the environmental context of disability.
Our society faces several fundamental challenges, which are highlighted within this report. Will this country commit to actions that will limit the progression of physical and mental impairments into disabilities and prevent the development of secondary conditions? Will society provide affordable and accessible health care and technological aids that promote good health and maximize societal participation for people with disability? Will society reduce environmental barriers for people with existing impairments? And will society demand that all levels of government invest in more research, the improved coordination of research, and the need for the enhanced visibility of disability-related research within our public research programs? The answers to these questions will undoubtedly define the future of disability in America and leave lasting legacies for future generations.
The poet Archibald MacLeish once wrote, “America was always promises.” There is still much work to do, but never have America’s promises been within closer reach for people with disabilities, if only we harness
the innovative spirit of American science and industry, promote and assist compliance with existing civil rights legislation, and remove outdated restrictions in public and private health plans. Working together, I know that we can transform the future of disability in America.
Alan M. Jette, Chair
April 2007
Boxes, Figures, and Tables
BOXES
1-1 |
Public Health Objectives in Healthy People 2010, |
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2-1 |
Major Concepts in the International Classification of Functioning, Disability and Health, |
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2-2 |
Components and Domains of Human Functioning in the International Classification of Functioning, Disability and Health, |
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2-3 |
Disability-Related Content in the Redesigned National Health Interview Survey, |
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2-4 |
Disability Items in the American Community Survey 2006 Content Test, |
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2-5 |
Directions for Further Work on the International Classification of Functioning, Health and Disability, |
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3-1 |
Selected Recent Chartbooks and Other Profiles of Statistical Data on Disability, |
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4-1 |
Characteristics of Child and Adolescent Health That May Affect the Complexity of Health Care Transitions, |
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4-2 |
Selected Survey Findings About the Postschool Experiences of Young People with Disabilities, |
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4-3 |
Features of Disability-Competent Chronic Care Systems, |
4-4 |
Care Coordination and Transition Planning, |
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4-5 |
Examples of Barriers to Care Coordination and Transition for Young People with Disabilities, |
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4-6 |
Directions for Research on Health Care Transitions for Young People, |
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6-1 |
Selected Universal Design and Other Features for Health Care Facilities, |
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6-2 |
Highlights of ADA Settlement Involving Washington Hospital Center, |
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7-1 |
Principles of Universal Design, |
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7-2 |
Focus of NIDRR-Supported Rehabilitation Engineering Research Centers, |
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8-1 |
Criteria for Assessing Risk Adjustment Methods, |
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9-1 |
Medicaid’s Early Periodic Screening, Detection, and Treatment Benefits, |
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9-2 |
Medicare Coverage of Personal Care Services as a Home Health Service, |
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9-3 |
Personal Assistance Services and Medicaid Home Health Benefits, |
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9-4 |
Examples of Federal Programs (Other Than Medicare and Medicaid) That Provide Some Support for Personal Assistance Services, |
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9-5 |
Criteria Used to Determine Coverage of Specific Services or Products, |
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9-6 |
Key Principles to Guide the Extension of Health Insurance Coverage, |
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10-1 |
Federal Sponsors of Disability Research, |
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F-1 |
Hearing Aid Compatibility Rules for Wireless Telephones 47 C.F.R. §20.19, |
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F-2 |
TRS Mandatory Minimum Standards 47 C.F.R. §64.604 and §64.605, |
FIGURES
3-1 |
Trends in overweight (obesity) for children ages 6 to 11 and adolescents ages 12 to 19, civilian noninstitional population, 1963 to 2002, |
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3-2 |
Trends in the proportion of the civilian, noninstitutional population ages 18 to 44 and 45 to 64 needing help with ADLs or IADLs only, 1984 to 2004, |
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3-3 |
Trends in the proportion of the civilian, noninstitutional population who are unable to work, by gender, ages 18 to 44 and 45 to 64, 1984 to 2004, |
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3-4 |
Trends in employment rates for people with any type of activity limitation and for people without such limitations, ages 18 to 44 and 45 to 64, civilian, noninstitutional population, 1984 to 2004, |
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3-5 |
Trends in the prevalence of obesity for men and women ages 20 to 39 and 40 to 59, civilian, noninstitutional population, 1960 to 2004, |
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3-6 |
Percentage of the civilian, noninstitutional population ages 70 years and older reporting need for help with personal care or help with routine care activities only, 1982 to 2003, |
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3-7 |
Percentage of community-dwelling Medicare beneficiaries ages 65 and over who have difficulty in performing selected personal care activities without help or special equipment, 1992 to 2003, |
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3-8 |
Percentage of Medicare beneficiaries ages 65 and over living in nursing homes and other facilities who have any difficulty in performing selected personal care activities because of a health or physical problem, 1992 to 2003, |
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10-1 |
Funding trends for NIDRR, NCMRR, and VA RR&D, |
TABLES
S-1 |
Report Recommendations in Overview, |
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1-1 |
Timeline of Milestones in U.S. Disability Policy, |
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2-1 |
Overview of National Surveys That Include Measures of Disability, |
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3-1 |
Disability Rates by Sex and Age (Excluding Ages 0 to 4), Civilian Population (Excluding Residents of Nursing Homes, Dormitories, and Other Group Housing), 2004, |
3-2 |
Leading Chronic Health Conditions Reported as Causing Limitations of Activities, by Age, Civilian, Noninstitutional Population, 2002 and 2003, |
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3-3 |
Percentage of Children (Under Age 18) with Activity Limitations, by Type of Limitation and Age, 1984 to 1996, |
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3-4 |
Percentage of Children (Under Age 18) with Activity Limitations, by Type of Limitation, Age Group, and Gender, 1997 to 2004, |
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3-5 |
Trends in Chronic Health Conditions Causing Limitations of Activity as Reported for Civilian, Noninstitutional Population, Ages 18 to 64, 1997 to 2004, |
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3-6 |
Trends in Self-Reported Health Conditions and Mobility Limitations, Community-Dwelling Medicare Beneficiaries Under Age 65, 1992 to 2002, |
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3-7 |
Trends in Chronic Health Conditions Related to Activity Limitations, Civilian, Noninstitutional Population, Ages 65 and Over, 1997 to 2004, |
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4-1 |
Usual Sources of Health Care for Young People With and Without Activity Limitations, Ages 12 to 17 and 18 to 24, 2005, |
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5-1 |
Age of Disability Onset for Individuals with Disabilities by Category of Disability, 1994, |
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7-1 |
Examples of Barriers Created by Mainstream Technologies, |
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8-1 |
Insurance Status of Adults Ages 18 to 64 with Physical, ADL or IADL Limitations, Civilian, Noninstitutional Population, Pooled Data for 1997 to 2002, |
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8-2 |
Sources of Payment by Age Group and Disability Status for Adults Ages 18 to 64 with Functional Limitations, U.S. Civilian, Noninstitutionalized Population, 1997 to 2002, |
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8-3 |
Insurance Coverage for Children With and Without Special Health Care Needs (SHCN), by Type of Coverage, 2000, |
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8-4 |
Average Annual Expenditures for Health Care by Disability Status and Age Group for Working-Age Adults with Functional Limitations, Civilian, Noninstitutional Population, Pooled Data, 1997 to 2002, |
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8-5 |
Prediction of Medicare Beneficiary Costliness by Risk Adjustment Method, |
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9-1 |
Summary of Public Health Plan Coverage of Assistive Technology, |
9-2 |
Summary of Financial Assistance for Assistive Technology in Selected Federal Programs, |
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C-1 |
Distribution of Difference Between HMO and Fee-for-Service Mean Risk Factors for Medicare Beneficiaries in 428 U.S. Counties, |
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C-2 |
Percent Relative Risk Difference Between High- and Low-Risk Participating Health Plans, |
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C-3 |
Predictive Ratios for Alternative Risk Adjustment Models, |
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C-4 |
Medicare Predictive Ratios for Noninstitutional Beneficiaries by Functional Status, Pooled Data, 1991 to 1994, |
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E-1 |
Studies of the Effect of the ADA on Employment Rates and Wages, |
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G-1 |
Travel Modes Used in the Past Month by People with Disabilities, |
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G-2 |
Transportation Mode Used by Drivers and Nondrivers with Disabilities in the Past Month, |
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G-3 |
Types of Driving Self-Regulation by People With and Without Disabilities, |
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G-4 |
Complementary Paratransit Cost and Ridership Patterns for People With and Without Disabilities, |
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G-5 |
Current Paratransit Service Coverage and Potential Expansion Costs, |