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WORKSHOP ON DISABILITY IN AMERICA A NEW LOOK

Summary and Background Papers

Based on a Workshop of the Committee on Disability in America: A New Look

Board on Health Sciences Policy

Marilyn J. Field, Alan M. Jette, and Linda Martin, editors

INSTITUTE OF MEDICINE OF THE NATIONAL ACADEMIES

THE NATIONAL ACADEMIES PRESS
Washington, D.C.
www.nap.edu



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Workshop on Disability in america A new look: Summary and background papers WORKSHOP ON DISABILITY IN AMERICA A NEW LOOK Summary and Background Papers Based on a Workshop of the Committee on Disability in America: A New Look Board on Health Sciences Policy Marilyn J. Field, Alan M. Jette, and Linda Martin, editors INSTITUTE OF MEDICINE OF THE NATIONAL ACADEMIES THE NATIONAL ACADEMIES PRESS Washington, D.C. www.nap.edu

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Workshop on Disability in america A new look: Summary and background papers 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. 200-2000-00629, TO #32 between the National Academy of Sciences and the Centers for Disease Control and Prevention. Any opinions, findings, conclusions, or recommendations expressed in this publication are those of the author(s) 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 Workshop on Disability in America, a New Look (2005 : Washington, D.C.) Workshop on Disability in America, a New Look : summary and papers : based on a workshop of the Committee on Disability in America: a New Look, Board on Health Sciences Policy / Marilyn J. Field, Alan M. Jette, and Linda Martin, editors. p. ; cm. Includes bibliographical references and index. ISBN 0-309-10090-9 (pbk.) 1. People with disabilities—United States—Congresses. 2. People with disabilities—Health and hygiene—United States—Congresses. 3. Disabilities—Age factors—United States—Congresses. 4. Health promotion—United States—Congresses. [DNLM: 1. Disabled Persons—United States—Congresses. 2. Age Factors—United States—Congresses. 3. Chronic Disease—epidemiology—United States—Congresses. 4. Comorbidity—United States—Congresses. 5. Disabled Persons—classification—United States—Congresses. ] I. Field, Marilyn J. (Marilyn Jane) II. Jette, Alan M. III. Martin, Linda G., 1947- IV. Institute of Medicine (U.S.). Committee on Disability in America: a New Look. V. Title. HV1553.W67 2005 362.40973—dc22 2005036811 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 2006 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 Museum in Berlin.

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Workshop on Disability in america A new look: Summary and background papers “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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Workshop on Disability in america A new look: Summary and background papers 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. Wm. A. Wulf 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. Wm. A. Wulf are chair and vice chair, respectively, of the National Research Council. www.national-academies.org

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Workshop on Disability in america A new look: Summary and background papers WORKSHOP COMMITTEE ON DISABILITY IN AMERICA: A NEW LOOK ALAN M. JETTE (Chair), Director, Health & Disability Research Institute, Boston University ELENA ANDRESEN, Professor and Chief, Epidemiology Division, Department of Health Services Research, Management, and Policy, University of Florida Health Sciences Center 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 University and Beth Israel Deaconess Medical Center JUNE ISAACSON KAILES, Associate Director, Center for Disability Issues and the Health Professions, Western University of Health Sciences LAURA MOSQUEDA, Director of Geriatrics, College of Medicine, University of California, Irvine 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 Following the workshop and with the initiation of the second phase of the disability study, additional members were appointed to the committee: Michael Chernew, Ph.D., professor of health management and policy, School of Public Health, University of Michigan; Margaret A. Turk, M.D., professor of physical medicine & rehabilitation, State University of New York Upstate Medical University at Syracuse; Gregg Vanderheiden, Ph.D., professor of industrial and biomedical engineering and director, Trace Research and Development Center, University of Wisconsin at Madison; and John Whyte, M.D., Ph.D., director, Moss Rehabilitation Research Institute, Philadelphia.

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Workshop on Disability in america A new look: Summary and background papers Study Staff MARILYN J. FIELD, Study Director AFRAH ALI, Senior Project Assistant FRANKLIN BRANCH, Research Assistant LINDA MARTIN, Institute of Medicine Scholar in Residence Board on Health Sciences Policy Staff ANDREW POPE, Director, Board on Health Sciences Policy AMY HAAS, Administrative Assistant

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Workshop on Disability in america A new look: Summary and background papers Contents     REVIEWERS   xiii     INTRODUCTION   1     SUMMARY OF WORKSHOP PRESENTATIONS AND DISCSSIONS   4      Models and Concepts of Disability,   5      Trends in Disability,   10      Disability Across the Age Spectrum,   16      Secondary Health Conditions: Part I,   20      Secondary Health Conditions: Part II,   29      References,   36     APPENDIXES     A   Workshop Agenda and Participants   39 B   Conceptual Models of Disability: Past, Present, and Future   50 C   Defining and Classifying Disability in Children   67 D   How Does the Environment Influence Disability? Examining the Evidence   88 E   Late-Life Disability Trends: An Overview of Current Evidence   101 F   Chronic Disease and Trends in Severe Disability in Working-Age Populations   113 G   Trends in Disability in Early Life   143

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Workshop on Disability in america A new look: Summary and background papers H   Aspect of Disability Across the Life Span: Risk Factors for Disability in Late Life   157 I   Health Care Transition of Adolescents and Young Adults with Disabilities and Special Health Care Needs: New Perspectives   166 J   Secondary Conditions and Disability   185 K   A User’s Perspective on Midlife (Ages 18 to 65) Aging with Disability   194 L   Impact of Exercise on Targeted Secondary Conditions   205 M   Secondary Conditions with Spinal Cord Injury   222 N   Depression as a Secondary Condition in People with Disabilities   234 O   Promoting Health and Preventing Secondary Conditions Among Adults with Developmental Disabilities   251 P   Biographical Sketches of Workshop Committee and Workshop Presenters   265

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Workshop on Disability in america A new look: Summary and background papers Boxes, Figures, and Tables BOXES I-1   Health Care Transitions for Young Adults with Special Health Care Needs,   176 K-1   Directions for Research on Health Living with a Disability,   203 FIGURES B-1   ICF model of disability,   55 E-1   Percentage of the community-based population ages 70 years and older reporting need for help with personal care or only routine care activities, 1982 to 2004,   103 H-1   Models of the pathway from disease to disability,   161 H-2   Percentage of American men and women age 50 years or older projected to survive to age 90 years and older,   163 H-3   Percentage of individuals age 70 years or older defined as disabled by year before death,   164 J-1   Conceptual model of aging with different characteristics,   191

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Workshop on Disability in america A new look: Summary and background papers M-1   Fitted values for percentage of forced vital capacity (FVC) predicted by level of complete motor lesions. C = cervical; T = thoracic; L = lumbar,   223 M-2   Level of HDL cholesterol by extent of neurological deficit,   225 M-3   Association between the percentage of total percent lean tissue in the body and age for able-bodied controls (solid arrow; slope = −0.102; r2 = 0.02) compared with that for individuals with spinal cord injuries (SCI) (dashed arrow; slope = −0.275; r2 = 0.10) (*, p < 0.0001),   227 M-4   Relationship of percent body fat to BMI for individuals with spinal cord injuries (SCI) compared with that for controls,   228 M-5   Oral glucose tolerance by level of neurological deficit. NT= normal glucose tolerance; IGT = impaired glucose tolerance; DM = diabetes mellitus,   229 M-6   Bowel evacuation after the administration of neostigmine or neostigmine and glycopyrrolate compared with that after administration of a placebo (*, p < 0.01 for both drugs compared with placebo),   230 M-7   Distribution of serum 25-hydroxyvitamin D [25(OH)D] in 40 individuals with spinal cord injuries who received supplementary vitamin D (800 units per day for 12 months),   231 N-1   Depression prevalence among people with different types of disabling conditions,   241 N-2   A general model of psychological stress and coping,   244 N-3   Effects of treatment on depression,   247 O-1   Relationship between environmental, physiological, and behavioral risk and protective factors and limitations due to secondary conditions,   253 O-2   Surveillance systems for secondary conditions in the population of adults with intellectual and developmental disabilities living in supported arrangements,   254 O-3   Oral health ratings obtained by using two measures, the Gingivitis Index (GI) and the Lobene Stain Index (LSS), across regular (Reg) and novel (experimental [Exp]) toothbrushes during the baseline and at 6 weeks after the intervention,   260

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Workshop on Disability in america A new look: Summary and background papers TABLES B-1   Concepts and Terminology Used by Models of Disability,   54 C-1   Complementary Contributions of Three Continuum Concepts to Defining Disability in Childhood,   72 C-2   Examples of ICF Activities and Participation Codes for Key Indicators,   83 D-1   Comparison of Approaches for Measurement of the Environment,   93 F-1   Age-Specific Trends in the Proportion of People with Personal Care or Routine Care Needs Limitations per 10,000 Population, 1984 to 2000,   120 F-2   A Decomposition of Changes in the Prevalence of Disability Due to Chronic Disease, 1984 to 1996,   128 F-3   A Decomposition of Changes in the Prevalence of Disability for 30-Year-Olds Due to Chronic Disease, 1984 to 1996,   129 F-4   A Decomposition of Changes in Disability Prevalence for 45-Year-Olds Due to Chronic Disease, 1984 to 1996,   130 F-5   A Decomposition of Changes in Disability Prevalence for 60-Year-Olds Due to Chronic Disease, 1984 to 1996,   131 H-1   Most Common Diseases Reported to Cause Difficulty with Specific Tasks,   159 O-1   Top Ranked Secondary Conditions,   256 O-2   Secondary Condition Factors and Items Represented,   257

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Workshop on Disability in america A new look: Summary and background papers Reviewers This workshop summary 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: Diane L Damiano, Ph.D., P.T., Research Associate Professor, Department of Neurology, Washington University, Saint Louis John Ditunno, M.D., Professor of Rehabilitation Medicine, Jefferson Medical College, Thomas Jefferson University Corinne Kirchner, Ph.D., Director, Policy Research and Program Evaluation, American Foundation for the Blind John Melvin, M.D., Chair, Department of Rehabilitation Medicine, Jefferson Medical College, Thomas Jefferson University Kenneth J. Ottenbacher, Ph.D., Associate Director, Sealy Center on Aging, University of Texas Medical Branch, Galveston Susan Palsbo, Ph.D., Principal Research Associate, Center for Health Research, Policy, and Ethics, George Mason University

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Workshop on Disability in america A new look: Summary and background papers Although the reviewers listed above have provided many constructive comments and suggestions, they were not asked to endorse the report nor did they see the final draft before its release. The review of this report was overseen by Mel Worth, M.D., Scholar in Residence at the Institute of Medicine. Appointed by the National Research Council and the Institute of Medicine, he was 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 authors and the institution.

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Workshop on Disability in america A new look: Summary and background papers WORKSHOP ON DISABILITY IN AMERICA A NEW LOOK

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