DISABILITY IN AMERICA

TOWARD A NATIONAL AGENDA FOR PREVENTION

Andrew M. Pope

and

Alvin R. Tarlov

Editors

Committee on a National Agenda for the Prevention of Disabilities

Division of Health Promotion and Disease Prevention

INSTITUTE OF MEDICINE

NATIONAL ACADEMY PRESS
Washington, D.C.
1991



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Disability in America: Toward a National Agenda for Prevention DISABILITY IN AMERICA TOWARD A NATIONAL AGENDA FOR PREVENTION Andrew M. Pope and Alvin R. Tarlov Editors Committee on a National Agenda for the Prevention of Disabilities Division of Health Promotion and Disease Prevention INSTITUTE OF MEDICINE NATIONAL ACADEMY PRESS Washington, D.C. 1991

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Disability in America: Toward a National Agenda for Prevention NATIONAL ACADEMY PRESS 2101 Constitution Avenue, N.W. Washington, D.C. 20418 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 competencies and with regard for appropriate balance. This report has been reviewed by a group other than the authors according to procedures approved by a Report Review Committee appointed by the members of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine. The Institute of Medicine was chartered in 1970 by the National Academy of Sciences to enlist distinguished members of the appropriate professions in the examination of policy matters pertaining to the health of the public. In this, the Institute acts under both the Academy's 1863 congressional charter responsibility to be an adviser to the federal government and its own initiative in identifying issues of medical care, research, and education. Support for this study was provided by the Centers for Disease Control (Contract no. 200-88-0690). Library of Congress Cataloging-in-Publication Data Institute of Medicine (U.S.). Committee on a National Agenda for Prevention of Disabilities. Disability in America: toward a national agenda for prevention / Andrew M. Pope and Alvin R. Tarlov, editors: Committee on a National Agenda for the Prevention of Disabilities, Division of Health Promotion and Disease Prevention, Institute of Medicine. p. cm. Report of a study undertaken by the Committee on a National Agenda for the Prevention of Disabilities Includes bibliographical references and index. ISBN 0-309-04378-6 1. Chronic diseases—United States—Prevention. 2. Handicapped— United States. I. Pope, Andrew MacPherson, 1950-. II. Tarlov, Alvin R. (Alvin Richard), 1929-. III. Title. [DNLM: 1. Handicapped. 2. Preventive Health Services—United States. 3. Primary Prevention—methods—United States. 4. Public Policy—United States. HV 1553 I59d] RA644.6.I58 1991 614.5'99—dc20 DNLM/DLC for Library of Congress 91-15496 CIP Copyright © 1991 by the National Academy of Sciences 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 image adopted as a logotype by the Institute of Medicine is based on a relief carving from ancient Greece, now held at the Staatlichemuseen in Berlin.

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Disability in America: Toward a National Agenda for Prevention COMMITTEE ON A NATIONAL AGENDA FOR THE PREVENTION OF DISABILITIES ALVIN R. TARLOV (Chair), Director, Division of Health Improvement, The Health Institute, New England Medical Center; Professor of Medicine, Tufts University School of Medicine; and Professor of Health Promotion, Harvard School of Public Health, Boston, Massachusetts HENRY A. ANDERSON, Chief, Environmental and Chronic Disease Epidemiology, Wisconsin Division of Health, Madison PETER W. AXELSON, President, Beneficial Designs, Inc., Santa Cruz, California HENRY B. BETTS, Chief Executive Officer and Medical Director, Rehabilitation Institute of Chicago, Chicago, Illinois ALLEN C. CROCKER, Director, Developmental Evaluation Center, Children's Hospital, Boston, Massachusetts GERBEN DeJONG, Director, National Rehabilitation Hospital Research Center, Medlantic Research Foundation, and Professor, Department of Community and Family Medicine, Georgetown University, Washington, D.C. JOHN F. DITUNNO, JR., Professor and Chairman, Department of Rehabilitation Medicine, Jefferson Medical College, Thomas Jefferson University, Philadelphia, Pennsylvania JOSEPH T. ENGLISH, Director, Department of Psychiatry, St. Vincent's Hospital and Medical Center of New York, New York, New York DOUGLAS A. FENDERSON, Professor, Department of Family Practice and Community Health, University of Minnesota, Minneapolis MARGARET J. GIANNINI, Deputy Assistant, Chief Medical Director for Rehabilitation and Prosthetics, Department of Veterans Affairs, Washington, D.C. MITCHELL P. LaPLANTE, Director, Disability Statistics Program, Institute for Health and Aging, University of California, San Francisco G. DEAN MacEWEN, Chairman, Department of Orthopedics, Children's Hospital, New Orleans, Louisiana ELLEN J. MacKENZIE, Associate Professor, Department of Health Policy and Management, Johns Hopkins School of Hygiene and Public Health, Baltimore, Maryland GEORGE L. MADDOX, JR., Chairman, University Council on Aging and Human Development, Duke University Medical Center, Durham, North Carolina DAVID MECHANIC, Director, Institute for Health, Health Care Policy, and Aging Research, Rutgers University, New Brunswick, New Jersey JOHN L. MELVIN, Chairman, Department of Physical Medicine and Rehabilitation, Medical College of Wisconsin, Milwaukee

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Disability in America: Toward a National Agenda for Prevention ARTHUR T. MEYERSON, Professor and Chairman, Department of Psychiatry and Mental Health Sciences, Hahnemann University School of Medicine, Philadelphia, Pennsylvania DOROTHY P. RICE, Professor in Residence, Department of Social and Behavioral Sciences, School of Nursing, University of California, San Francisco JULIUS B. RICHMOND, John D. MacArthur Professor of Health Policy, Emeritus, Harvard Medical School, Boston, Massachusetts MAX J. STARKLOFF, President, Paraquad, Inc., St. Louis, Missouri DEBORAH ANN STONE, David R. Pokross Professor of Law and Social Policy, Heller School, Brandeis University, Waltham, Massachusetts S. LEONARD SYME, Professor of Epidemiology, Department of Biomedical and Environmental Health Sciences, School of Public Health, University of California, Berkeley JOHN E. WARE, JR., Senior Scientist, The Institute for the Improvement of Medical Care and Health, New England Medical Center, Boston, Massachusetts Institute of Medicine Staff Andrew M. Pope, Study Director Gary B. Ellis, Director, Division of Health Promotion and Disease Prevention Alexandra N. Bernstein, Research Associate Judith L. Estep, Administrative Secretary Linda A. DePugh, Administrative Assistant Cynthia Abel, Financial Associate

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Disability in America: Toward a National Agenda for Prevention Preface In 1985 the National Research Council and the Institute of Medicine released the landmark report Injury in America, which identified injury as the leading cause of death and disability among children and young adults and, indeed, the principal public health problem facing America. The primary measure used in the study to describe the public health significance of injury was "years of potential life lost" (before age 65). Because injury affects primarily young people, and because death and disability (defined in that report as the inability to work) are the significant outcomes associated with injury, the years of potential life lost to injury were revealed as a much larger public health issue than cardiovascular disease and cancer combined. Disability in America builds on the Injury report to discuss not only disability caused by injury but also developmental disability, chronic disease and aging, and secondary conditions arising from primary disabling conditions. More important, this report focuses on preventing a potentially disabling condition from developing into disability and on minimizing the effects of such conditions on a person's productivity and quality of life. In one sense, disability frequently results from the failure of our successes—for example, success in saving the lives of low-birthweight babies and persons with traumatic injuries or chronic disease. This report goes beyond the traditional medical model to consider and address the needs of people with disabling conditions after those conditions exist and after they have been "treated" and "rehabilitated." Prevention of the initial condition (primary prevention) is certainly important, but the emphasis in this report is on developing interventions that can prevent pathology from becoming impairment, impairment from becoming functional limitation, functional limitation from becoming disability, and any of these conditions from causing secondary conditions. Theoretically, each stage

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Disability in America: Toward a National Agenda for Prevention presents an opportunity to intervene and prevent the progression toward disability. Thus, the report sets forth a model developed by its authoring body, the Committee on a National Agenda for the Prevention of Disabilities, that describes disability not as a static endpoint but as a component of a process. The report is organized loosely according to a life course perspective: it first discusses developmental disability, which is a group of conditions that begins during childhood; then injury-related disability, which affects primarily adolescents and young adults; and finally disability, which is often associated with chronic disease and aging. It also describes disability as a social issue and not just a physical condition. In other words, a person is not always disabled by paralysis but more commonly by the way he or she is treated by others and restricted from performing normal social roles. Moreover, although the spectrum of disabling conditions is broad, affecting every segment of society, individuals of low socioeconomic status feel its impact most heavily. Some disabling conditions barely make a difference in an individual's life; others, especially those that are most debilitating, can require continuous post-hospitalization care, assistive devices, attendant services, and work-site and home modifications—items and services that often are not covered by insurance programs. In these cases, those who can easily afford to pay for the most appropriate care do so; those who are impoverished use what is available through public programs; and those who are moderately well off must totally exhaust their own resources to become eligible for any assistance through public programs. Disabilities affect not only the lives of the individuals who acquire them but everyone else as well. Their cost to the nation is great in terms of income supplements (to support those with chronically disabling conditions), medical and other health care expenditures, and lost productivity, which may result from disability, lack of retraining, or needed work-site modification. The emotional cost to family and friends of people with disabilities is incalculable. To explore these issues and the range of available interventions, the Centers for Disease Control (CDC) in conjunction with the National Council on Disability (NCD) requested the Institute of Medicine to constitute an expert committee to develop a national agenda for the prevention of disabilities. The CDC is "the nation's prevention agency." The NCD, an independent federal agency, makes recommendations to the President, Congress, and other federal bodies on federal policy and programs that affect people with disabilities. It has become the principal national advocate for disability rights and improved services and has been largely responsible for the heightened national interest in preventing disabilities. The NCD's efforts recently culminated in passage of the Americans with Disabilities Act, which bans discrimination against persons with disabilities

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Disability in America: Toward a National Agenda for Prevention in employment, transportation, public accommodations, telecommunications, and local and state government activities. This act also provides guidance for governmental policies and services, as well as for businesses and other organizations. Other NCD initiatives have led to major steps forward in addressing disability prevention on the national level. For example, the 1986 NCD report Toward Independence was the impetus for establishing the Disabilities Prevention Program at CDC, which uses CDC's strengths in public health surveillance, epidemiology, technology transfer, and communication with state and local health departments to initiate and support state and local disability prevention programs and to increase the knowledge base necessary for developing and evaluating effective preventive interventions. The program currently focuses on developmental disability, head and spinal cord injury, and secondary conditions in people with physical limitations. As seen in the CDC disabilities prevention program, there is increased awareness on the part of researchers, health care providers, and others of the need for an effective national disability prevention program to improve the quality of life of millions of Americans and reduce the cost of disability to the American public. A good deal of what is preventable could be prevented now—using what we already know about injury prevention, prenatal care, health promotion, and the care of disabling conditions to prevent secondary conditions. What is needed is better organization and coordination at the national level, coupled with improved collection of information on the incidence and prevalence of disability, the extension of disability prevention programs to all 50 states and the District of Columbia, and research into the most effective points of intervention. Although this report addresses many issues related to disability prevention and the need for a National Disability Prevention Program, there is no detailed assessment of the costs of such a program. It is the committee's hope that an in-depth study of the costs of disability (and disability prevention) will follow this report, much as The Cost of Injury was prepared after Injury in America. Other topics that deserve additional attention vis-à-vis disability include mental health, chronic disease and aging, the ethics of disability prevention, access to assistive technology and personal assistance services, and gaps in health insurance, including medical underwriting practices. These topics are all related to health promotion and disability prevention and would be logical extensions of the current effort. Many of the topics related to disability involve civil rights and social issues, and efforts to address them often engender controversy among knowledgeable persons with conflicting views. This was certainly the case with the work of this committee. Over a period of almost 2 years, we examined information, listened to testimony from experts, deliberated, debated, and formed working groups to write the individual chapters of the

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Disability in America: Toward a National Agenda for Prevention report. There was no suppression of any argument. Discussions were free-ranging and open, and voluminous amounts of information from various sources with differing perspectives were considered, analyzed, discussed, and debated. The contents of the report represent the committee's consensus on the issues it was charged to address, a consensus reached after a long, arduous process. Regrettably, one committee member (Deborah Stone) who attended few meetings and therefore did not have the benefit of the committee's deliberative process was unable to concur in the committee's views. Her dissenting statement and a response by the committee appear as Appendix B of this report. The committee believes that disability prevention should be a high priority not only within the public health and allied health professions but also in the wider setting of American society. In addition, although it is important to learn how to prevent and ameliorate physical and mental conditions that can cause disability, it is equally important to recognize that a disabling condition is only a single characteristic of the person who has it. The time has come for the nation to address disability as an issue that affects all Americans, one for which an investment in education, access to preventive services and technology, and the development of effective interventions could yield unprecedented returns in public health, personal achievement, and national productivity. ALVIN R. TARLOV, Chair Committee on a National Agenda for the Prevention of Disabilities

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Disability in America: Toward a National Agenda for Prevention Acknowledgments The following colleagues in both the public and private sectors generously shared information, resource material, and expertise: M. J. Adams, Jr., Monroe Berkowitz, Betty Jo Berland, Scott C. Brown, Larry Burt, Jose Cordero, Philip Graitcer, Robert Griss, Lawrence Haber, James Harrell, Judith Heumann, Vernon Houk, Christopher Howson, Jack Jackson, Fred Krause, Daniel Levine, Saad Nagi, Godfrey Oakley, Sandra Parrino, Solomon Snyder, William Spencer, Thomas Stripling, William Taylor, Stephen Thacker, R. Alexander Vachon, Lois Verbrugge, Kent Waldrep, Deborah Wilkerson, Meyer Zitter, and Irving Zola. In addition to the efforts of the editors, Andrew Pope and Alvin Tarlov, Mark Bello deserves acknowledgment for his assistance and contributions in writing and editing. The committee also thanks Michael Stoto and Jane Durch for their analysis of disability data and contributions to Chapter 2 of the report, and Connie Rosemont for her assistance with references and last minute details. The committee also acknowledges the historical perspective of Michael Marge and his tireless efforts in promoting disability prevention and supporting this committee's work. The committee is grateful to Judy Estep for her cheerfulness and skill in "keeping the trains running" throughout most of the committee's tenure, and for the initial preparation of the manuscript. Randy Conner, Dorothy Majewski, and Rosena Ricks efficiently handled the final preparation of the manuscript for publication.

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Disability in America: Toward a National Agenda for Prevention Contents     EXECUTIVE SUMMARY   1 1   INTRODUCTION   32     Disability: Definition and Concept   34     Public Health and Disability Prevention   37     Scope and Organization of the Report   39 2   MAGNITUDE AND DIMENSIONS OF DISABILITY IN THE UNITED STATES   41     Data Sources   41     Prevalence of Disability   45     Trends in the Prevalence of Disability   53     Conditions Leading to Disability   56     Life Table Perspective   61     Economic Cost of Disability   67     Conclusion   73 3   A MODEL FOR DISABILITY AND DISABILITY PREVENTION   76     Conceptual Framework   76     Model of Disability   83     The Need for Epidemiology   95     Applying Traditional Prevention Strategies to Disability   104 4   PREVENTION OF DEVELOPMENTAL DISABILITIES   109     Public Health Significance   109     Approaches to Prevention   122     Opportunities and Needs   132

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Disability in America: Toward a National Agenda for Prevention 5   PREVENTION OF INJURY-RELATED DISABILITY   147     Injury in America: Magnitude of the Problem   147     Central Nervous System Injuries   150     Surveillance: Counting the Survivors and Assessing Their Needs   156     Primary Prevention: The Strategy of Choice   159     A Systems Approach to Acute Care and Rehabilitation   164 6   PREVENTION OF DISABILITY ASSOCIATED WITH CHRONIC DISEASES AND AGING   184     Magnitude of the Problem   186     Life Course Perspective on Disability and Its Prevention   193     Devising Approaches to Prevention   195 7   PREVENTION OF SECONDARY CONDITIONS   214     Model of Secondary Conditions   215     Components of a Comprehensive Prevention Program   223     Protocols for the Prevention of Secondary Conditions   234 8   A COMPREHENSIVE APPROACH TO DISABILITY PREVENTION: OBSTACLES AND OPPORTUNITIES   242     Demedicalization   244     National Health Promotion and Disease Prevention Objectives   245     Clinical Preventive Services   247     Federal Programs and Policies   248     The Need for Coordination   258 9   RECOMMENDATIONS   267     Organization and Coordination   267     Surveillance   273     Research   277     Access to Care and Preventive Services   280     Professional and Public Education   284     REFERENCES   288     APPENDIXES   307     A. Disability Concepts Revisited: Implications for Prevention Saad Nagi,   309     B. Dissent and Response   328     C. Committee Biographies   340     INDEX   351

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Disability in America: Toward a National Agenda for Prevention DISABILITY IN AMERICA

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