THE FUTURE OF DISABILITY IN AMERICA

Committee on Disability in America

Board on Health Sciences Policy

Marilyn J. Field and Alan M. Jette, Editors

INSTITUTE OF MEDICINE OF THE NATIONAL ACADEMIES

THE NATIONAL ACADEMIES PRESS

Washington, D.C.
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The Future of Disability in America THE FUTURE OF DISABILITY IN AMERICA Committee on Disability in America Board on Health Sciences Policy Marilyn J. Field and Alan M. Jette, Editors INSTITUTE OF MEDICINE OF THE NATIONAL ACADEMIES THE NATIONAL ACADEMIES PRESS Washington, D.C. www.nap.edu

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The Future of Disability in America 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 Additional copies of this report are available from the National Academies Press, 500 Fifth Street, N.W., Lockbox 285, Washington, DC 20055; (800) 624-6242 or (202) 334-3313 (in the Washington metropolitan area); Internet, http://www.nap.edu. For more information about the Institute of Medicine, visit the IOM home page at: www.iom.edu. Copyright 2007 by the National Academy of Sciences. All rights reserved. Printed in the United States of America. The serpent has been a symbol of long life, healing, and knowledge among almost all cultures and religions since the beginning of recorded history. The serpent adopted as a logotype by the Institute of Medicine is a relief carving from ancient Greece, now held by the Staatliche Museen in Berlin. Suggested citation: Institute of Medicine (IOM). 2007. The Future of Disability in America. Washington, DC: The National Academies Press.

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The Future of Disability in America “Knowing is not enough; we must apply. Willing is not enough; we must do.” —Goethe INSTITUTE OF MEDICINE OF THE NATIONAL ACADEMIES Advising the Nation. Improving Health.

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The Future of Disability in America 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. www.national-academies.org

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The Future of Disability in America 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

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The Future of Disability in America 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

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The Future of Disability in America 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 * IOM Boards do not review or approve individual reports and are not asked to endorse conclusions and recommendations. The responsibility for the content of the report rests with the authoring committee and the institution.

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The Future of Disability in America 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

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The Future of Disability in America 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.

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The Future of Disability in America 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

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The Future of Disability in America Contents     SUMMARY   1 1   INTRODUCTION   16      Disability and Related Societal Trends,   17      Origin of Study Tasks and Overview of Report,   19      Developments Since Publication of the 1991 and 1997 IOM Reports,   22      Choosing the Future of Disability in America,   25      The Future of Disability in a Public Health Context,   27      The Policy Environment of Disability,   30 2   DEFINITION AND MONITORING OF DISABILITY   35      Toward a Common Conceptual Framework,   36      Adopting and Improving the ICF,   42      A National Disability Monitoring System,   47      Recommendations,   59 3   DISABILITY TRENDS   65      Current Estimates of Disability and Related Conditions,   66      Monitoring Trends in Disability,   72      Trends in Early Life,   73      Trends in Disability in Middle Life,   82      Trends in Disability in Late Life,   88      Projecting the Future of Disability in America,   95

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The Future of Disability in America 4   HEALTH CARE TRANSITIONS FOR YOUNG PEOPLE   98      Transitions to Adult Care in a Life Span Perspective,   100      A Critical Transition: From Child to Adult,   101      Individual and Family Factors Affecting Health Care Transitions,   104      Adolescent Transitions, Public Policy, and Other Environmental Factors,   107      Health Care Services and Systems,   115      Directions for Research,   130      Education of Pediatricians and Adult Care Physicians,   130      Recommendations,   133 5   SECONDARY CONDITIONS AND AGING WITH DISABILITY   136      A Life Span Perspective on Secondary Conditions and Aging with a Disability,   139      Selective Review of the Literature,   144      Directions for Research and Education,   153      Recommendations,   158 6   THE ENVIRONMENTAL CONTEXT OF DISABILITY: THE CASE OF HEALTH CARE FACILITIES   162      Research on the Role of the Environment in Disability,   164      Accessible Health Care Facilities,   165      Recommendations,   178 7   ASSISTIVE AND MAINSTREAM TECHNOLOGIES FOR PEOPLE WITH DISABILITIES   183      Types of Technologies Used or Encountered by People with Disabilities,   186      Key Policies That Promote Assistive Technology and Universal Design of Mainstream Technologies,   192      Extent of Assistive Technology Use,   194      Outcomes of Assistive Technology Use,   196      Enhancing Accessibility Through Universal Design of Mainstream Technologies: Promises and Problems,   200      Challenges to Development and Effective Provision and Use of Assistive Technologies,   203      Recommendations,   216 8   ACCESS TO HEALTH INSURANCE AND THE ROLE OF RISK-ADJUSTED PAYMENTS TO HEALTH PLANS   222      Health Insurance Coverage for People with Disabilities,   224      Health Insurance Markets and Their Limits for People with Disabilities,   235

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The Future of Disability in America      Disability and Risk Adjustment of Payments to Health Plans,   239      Recommendations,   248 9   COVERAGE OF ASSISTIVE TECHNOLOGIES AND PERSONAL ASSISTIVE SERVICES   253      Types of Limitations on Coverage,   255      Coverage of Assistive Technologies,   258      Coverage of Personal Assistance Services,   265      Access to Assistive Technologies and Services Through Noninsurance Programs,   273      Rising Costs and the Challenge of Expanding Coverage of Assistive Services and Technologies,   276      Recommendations,   283 10   ORGANIZATION AND SUPPORT OF DISABILITY RESEARCH   287      Federal Disability Research Programs,   289      Challenges of Organizing and Coordinating Disability Research,   308      Recommendations,   314      Final Thoughts,   319     REFERENCES   321     APPENDIXES     A   Study Activities   385 B   Table of Contents for Workshop on Disability in America: A New Look (2006)   392 C   Risk Adjustment of Insurance Premiums in the United States and Implications for People with Disabilities David J. Knutson   394 D   The Americans with Disabilities Act in a Health Care Context Sara Rosenbaum   426 E   The Employment Discrimination Provisions of the Americans with Disabilities Act: Implementation and Impact Kathryn Moss and Scott Burris   453 F   Access to Telecommunications Technology by Americans with Disabilities: Key Laws and Policies Karen Peltz Strauss   478 G   Transportation Patterns and Problems of People with Disabilities Sandra Rosenbloom   519 H   Committee on Disability in America Biographical Sketches   561     INDEX   569

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The Future of Disability in America Boxes, Figures, and Tables BOXES 1-1   Public Health Objectives in Healthy People 2010,   29 2-1   Major Concepts in the International Classification of Functioning, Disability and Health,   38 2-2   Components and Domains of Human Functioning in the International Classification of Functioning, Disability and Health,   41 2-3   Disability-Related Content in the Redesigned National Health Interview Survey,   51 2-4   Disability Items in the American Community Survey 2006 Content Test,   52 2-5   Directions for Further Work on the International Classification of Functioning, Health and Disability,   61 3-1   Selected Recent Chartbooks and Other Profiles of Statistical Data on Disability,   67 4-1   Characteristics of Child and Adolescent Health That May Affect the Complexity of Health Care Transitions,   104 4-2   Selected Survey Findings About the Postschool Experiences of Young People with Disabilities,   113 4-3   Features of Disability-Competent Chronic Care Systems,   120

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The Future of Disability in America 4-4   Care Coordination and Transition Planning,   124 4-5   Examples of Barriers to Care Coordination and Transition for Young People with Disabilities,   125 4-6   Directions for Research on Health Care Transitions for Young People,   131 6-1   Selected Universal Design and Other Features for Health Care Facilities,   167 6-2   Highlights of ADA Settlement Involving Washington Hospital Center,   177 7-1   Principles of Universal Design,   191 7-2   Focus of NIDRR-Supported Rehabilitation Engineering Research Centers,   209 8-1   Criteria for Assessing Risk Adjustment Methods,   244 9-1   Medicaid’s Early Periodic Screening, Detection, and Treatment Benefits,   264 9-2   Medicare Coverage of Personal Care Services as a Home Health Service,   267 9-3   Personal Assistance Services and Medicaid Home Health Benefits,   269 9-4   Examples of Federal Programs (Other Than Medicare and Medicaid) That Provide Some Support for Personal Assistance Services,   275 9-5   Criteria Used to Determine Coverage of Specific Services or Products,   283 9-6   Key Principles to Guide the Extension of Health Insurance Coverage,   284 10-1   Federal Sponsors of Disability Research,   290 F-1   Hearing Aid Compatibility Rules for Wireless Telephones 47 C.F.R. §20.19,   490 F-2   TRS Mandatory Minimum Standards 47 C.F.R. §64.604 and §64.605,   500

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The Future of Disability in America 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,   79 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,   83 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,   85 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,   86 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,   89 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,   90 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,   91 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,   93 10-1   Funding trends for NIDRR, NCMRR, and VA RR&D,   291 TABLES S-1   Report Recommendations in Overview,   4 1-1   Timeline of Milestones in U.S. Disability Policy,   31 2-1   Overview of National Surveys That Include Measures of Disability,   48 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,   69

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The Future of Disability in America 3-2   Leading Chronic Health Conditions Reported as Causing Limitations of Activities, by Age, Civilian, Noninstitutional Population, 2002 and 2003,   71 3-3   Percentage of Children (Under Age 18) with Activity Limitations, by Type of Limitation and Age, 1984 to 1996,   75 3-4   Percentage of Children (Under Age 18) with Activity Limitations, by Type of Limitation, Age Group, and Gender, 1997 to 2004,   76 3-5   Trends in Chronic Health Conditions Causing Limitations of Activity as Reported for Civilian, Noninstitutional Population, Ages 18 to 64, 1997 to 2004,   87 3-6   Trends in Self-Reported Health Conditions and Mobility Limitations, Community-Dwelling Medicare Beneficiaries Under Age 65, 1992 to 2002,   88 3-7   Trends in Chronic Health Conditions Related to Activity Limitations, Civilian, Noninstitutional Population, Ages 65 and Over, 1997 to 2004,   95 4-1   Usual Sources of Health Care for Young People With and Without Activity Limitations, Ages 12 to 17 and 18 to 24, 2005,   116 5-1   Age of Disability Onset for Individuals with Disabilities by Category of Disability, 1994,   137 7-1   Examples of Barriers Created by Mainstream Technologies,   201 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,   227 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,   229 8-3   Insurance Coverage for Children With and Without Special Health Care Needs (SHCN), by Type of Coverage, 2000,   233 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,   237 8-5   Prediction of Medicare Beneficiary Costliness by Risk Adjustment Method,   247 9-1   Summary of Public Health Plan Coverage of Assistive Technology,   260

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The Future of Disability in America 9-2   Summary of Financial Assistance for Assistive Technology in Selected Federal Programs,   274 C-1   Distribution of Difference Between HMO and Fee-for-Service Mean Risk Factors for Medicare Beneficiaries in 428 U.S. Counties,   400 C-2   Percent Relative Risk Difference Between High- and Low-Risk Participating Health Plans,   402 C-3   Predictive Ratios for Alternative Risk Adjustment Models,   412 C-4   Medicare Predictive Ratios for Noninstitutional Beneficiaries by Functional Status, Pooled Data, 1991 to 1994,   414 E-1   Studies of the Effect of the ADA on Employment Rates and Wages,   458 G-1   Travel Modes Used in the Past Month by People with Disabilities,   524 G-2   Transportation Mode Used by Drivers and Nondrivers with Disabilities in the Past Month,   525 G-3   Types of Driving Self-Regulation by People With and Without Disabilities,   528 G-4   Complementary Paratransit Cost and Ridership Patterns for People With and Without Disabilities,   537 G-5   Current Paratransit Service Coverage and Potential Expansion Costs,   541

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