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SUMMARY AND RECOMMENDATIONS 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
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 compe- tencies 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 mat- ters 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). This Summary and Recommendations is available in limited quantities from the Institute of Medicine, Committee on a National Agenda for the Prevention of Disabilities, 2101 Constitu- tion Avenue, N.W., Washington, D.C. 20418. The complete volume of Disability in America, from which this Summary and Recommenda- tions is extracted, is available for sale from the National Academy Press, 2101 Constitution Avenue, N.W., Washington, D.C. 20418. 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, no w held at the Staatlichemuseen in Berlin.
COMMITTEE ON A NATIONAL AGENDA FOR THE PREVENTION OF DISABILITIES ALVIN R. TARLOV (Chair), Senior Scientist, The Institute for the Improvement of Medical Care and Health, New England Medical Center, and 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 in
DISABILITY IN AMERICA JOHN L. MELVIN, Chairman, Department of Physical Medicine and Rehabilitation, Medical College of Wisconsin, Milwaukee 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 Medicine, 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 iv
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 pri- mary measure used in the study to describe the public health significance of injury was "years of productive life lost." 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 productive 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 dis- ability caused by injury but also developmental disability, chronic disease and aging, and secondary conditions arising from primary disabling condi- tions. More important, this report focuses on preventing a potentially dis- abling 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 successesâ for example, success in saving the lives of low-birthweight babies and per- sons 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 pa- thology from becoming impairment, impairment from becoming functional limitation, functional limitation from becoming disability, and any of these
vi PREFACE conditions from causing secondary conditions. Theoretically, each stage 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 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 soci- ety, 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 modifica- tion. 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 Coun- cil on Disability (NCD) requested the Institute of Medicine to constitute an expert committee to develop a national agenda for the prevention of disabilities. The National Council on Disability, 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 inter- est in preventing disabilities. The NCD's efforts recently culminated in passage of the Americans with
PREFACE vii Disabilities Act, which bans discrimination against persons with disabilities 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 with whom those with disabilities interact. 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 Disabili- ties 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 nowâusing what we already know about injury prevention, pre- natal 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 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 preven- tion, 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-a-vis disability include mental health, chronic disease and ag- ing, the ethics of disability prevention, access to assistive technology and personal assistance services, and gaps in regulation of 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, de-
vil'i PREFACE bated, and formed working groups to write the individual chapters of the 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 consen- sus 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 the full report. The committee believes that disability prevention should be a high prior- ity 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, but 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
Acknowledgments The following colleagues in both the public and private sectors gener- ously 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, James Harrell, Judith Heumann, Vernon Houk, Jack Jackson, Fred Krause, Michael Marge, Saad Nagi, Godfrey Oakley, Sandra Parrino, William Spencer, William Taylor, Stephen Thacker, Kent Waldrep, Deborah Wilkerson, and Irving Zola. In addition to the efforts of the editors, Andrew Pope and Alvin Tarlov, Mark Bello deserves acknowl- edgment 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. 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 publi- cation.
Contents SUMMARY AND RECOMMENDATIONS 1 TOWARD A COMPREHENSIVE APPROACH TO DISABILITY PREVENTION 4 A Model of Disability, 5 Developmental Disabilities, 11 Injury-related Disabilities, 12 Disabilities Associated with Chronic Disease and Aging, 12 Secondary Conditions Associated with Disability, 13 RECOMMENDATIONS 14 Organization and Coordination, 14 Surveillance, 20 Research, 24 Access to Care and Preventive Services, 27 Professional and Public Education, 32 XI
Xii CONTENTS The contents of the entire report, from which this Summary and Recommendations is extracted, are listed below. EXECUTIVE SUMMARY 1 INTRODUCTION Disability: Definition and Concept Public Health and Disability Prevention Scope and Organization of the Report 2 MAGNITUDE AND DIMENSIONS OF DISABILITY IN THE UNITED STATES Data Sources Prevalence of Disability Trends in the Prevalence of Disability Conditions Leading to Disability Life Table Perspective Economic Cost of Disability Conclusion 3 A MODEL FOR DISABILITY AND DISABILITY PREVENTION Conceptual Framework Model of Disability The Need for Epidemiology Applying Traditional Prevention Strategies to Disability 4 PREVENTION OF DEVELOPMENTAL DISABILITIES Public Health Significance Approaches to Prevention Opportunities and Needs 5 PREVENTION OF INJURY-RELATED DISABILITY Impact of Injuries on American Society: Magnitude of the Problem Surveillance: Counting the Survivors and Assessing Their Needs Primary Prevention: The Strategy of Choice Mitigating the Effects of TBI and SCI: A Systems Approach to Acute Care and Rehabilitation
CONTENTS xiii 6 PREVENTION OF DISABILITY ASSOCIATED WITH CHRONIC DISEASE AND AGING Magnitude of the Problem Life Course Perspective on Disability and its Prevention Devising Approaches to Prevention 7 PREVENTION OF SECONDARY CONDITIONS Model of Secondary Conditions Components of a Comprehensive Prevention Program Protocols for the Prevention of Secondary Conditions 8 OBSTACLES TO AND OPPORTUNITIES FOR A COMPREHENSIVE APPROACH TO DISABILITY PREVENTION Demedicalization National Health Promotion and Disease Prevention Objectives Federal Programs and Policies The Need for Coordination 9 RECOMMENDATIONS FOR A NATIONAL AGENDA FOR THE PREVENTION OF DISABILITY Organization and Coordination Surveillance Research Access to Care and Preventive Services Professional and Public Education REFERENCES APPENDIXES A Disability Concepts Revisited: Implications for Prevention Saad Nagi B Dissent and Response C Committee Biographies INDEX
