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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. 1991i About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
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 Academyof Sciences, the National Academy of Engineering, and the Institute of Medicine. The members ofthe committee responsible for the report were chosen for their special competencies and with regardfor 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 pertain-ing to the health of the public. In this, the Institute acts under both the Academy's 1863 congres-sional charter responsibility to be an adviser to the federal government and its own initiative inidentifying 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 0-309-04378-61. Chronic diseases —United States —Prevention. 2. Handicapped — United States. I. Pope, Andrew Mac Pherson, 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 1991614. 5'99 —dc20 DNLM/DLCfor 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 Instituteof Medicine is based on a relief carving from ancient Greece, now held at the Staatlichemuseen in Berlin. ii About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
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 De JONG, 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. La PLANTE, Director, Disability Statistics Program, Institute for Health and Aging, University of California, San Francisco G. DEAN Mac EWEN, Chairman, Department of Orthopedics, Children's Hospital, New Orleans, Louisiana ELLEN J. Mac KENZIE, 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, Milwaukeeiii About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
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. Mac Arthur 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. De Pugh, Administrative Assistant Cynthia Abel, Financial Associateiv About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
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 primarymeasure used in the study to describe the public health significance of injurywas "years of potential life lost" (before age 65). Because injury affectsprimarily young people, and because death and disability (defined in that reportas the inability to work) are the significant outcomes associated with injury, theyears of potential life lost to injury were revealed as a much larger public healthissue 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 disablingcondition from developing into disability and on minimizing the effects of suchconditions on a person's productivity and quality of life. In one sense, disabilityfrequently results from the failure of our successes —for example, success in saving the lives of low-birthweight babies and persons with traumatic injuriesor 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 theinitial condition (primary prevention) is certainly important, but the emphasis inthis report is on developing interventions that can prevent pathology frombecoming impairment, impairment from becoming functional limitation,functional limitation from becoming disability, and any of these conditionsfrom causing secondary conditions. Theoretically, each stage PREFACE v About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
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, thatdescribes 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 thatbegins during childhood; then injury-related disability, which affects primarilyadolescents and young adults; and finally disability, which is often associatedwith 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 andrestricted from performing normal social roles. Moreover, although thespectrum of disabling conditions is broad, affecting every segment of society,individuals of low socioeconomic status feel its impact most heavily. Somedisabling 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 andhome modifications —items and services that often are not covered by insurance programs. In these cases, those who can easily afford to pay for the mostappropriate care do so; those who are impoverished use what is availablethrough 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 incomesupplements (to support those with chronically disabling conditions), medicaland 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 expertcommittee 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 federalbodies on federal policy and programs that affect people with disabilities. It hasbecome the principal national advocate for disability rights and improvedservices and has been largely responsible for the heightened national interest inpreventing disabilities. The NCD's efforts recently culminated in passage of the Americans with Disabilities Act, which bans discrimination against persons with disabilities PREFACE vi About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
in employment, transportation, public accommodations, telecommunications, and local and state government activities. This act also provides guidance forgovernmental policies and services, as well as for businesses and otherorganizations. 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 healthsurveillance, 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 fordeveloping and evaluating effective preventive interventions. The programcurrently focuses on developmental disability, head and spinal cord injury, andsecondary 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 theneed for an effective national disability prevention program to improve thequality 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, healthpromotion, 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 andprevalence of disability, the extension of disability prevention programs to all50 states and the District of Columbia, and research into the most effectivepoints of intervention. Although this report addresses many issues related to disability prevention and the need for a National Disability Prevention Program, there is no detailedassessment 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 mentalhealth, chronic disease and aging, the ethics of disability prevention, access toassistive technology and personal assistance services, and gaps in healthinsurance, including medical underwriting practices. These topics are all relatedto health promotion and disability prevention and would be logical extensionsof the current effort. Many of the topics related to disability involve civil rights and social issues, and efforts to address them often engender controversy amongknowledgeable persons with conflicting views. This was certainly the case withthe work of this committee. Over a period of almost 2 years, we examinedinformation, listened to testimony from experts, deliberated, debated, and formed working groups to write the individual chapters of the PREFACE vii About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
report. There was no suppression of any argument. Discussions were free-ranging and open, and voluminous amounts of information from varioussources with differing perspectives were considered, analyzed, discussed, anddebated. The contents of the report represent the committee's consensus on theissues it was charged to address, a consensus reached after a long, arduousprocess. 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. Herdissenting 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 thewider setting of American society. In addition, although it is important to learnhow to prevent and ameliorate physical and mental conditions that can causedisability, 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 whichan investment in education, access to preventive services and technology, andthe development of effective interventions could yield unprecedented returns inpublic health, personal achievement, and national productivity. ALVIN R. TARLOV, Chair Committee on a National Agenda for the Prevention of Disabilities PREFACE viii About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
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 andcontributions in writing and editing. The committee also thanks Michael Stotoand 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 historicalperspective 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 themanuscript. Randy Conner, Dorothy Majewski, and Rosena Ricks efficientlyhandled the final preparation of the manuscript for publication. ACKNOWLEDGMENTS ix About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
ACKNOWLEDGMENTS x About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
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 PREVEN-TION 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 132CONTENTS xi About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the original paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
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 PRE-VENTION: 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 351CONTENTS xii About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the original paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
DISABILITY IN AMERICA xiii About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the original paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
xiv About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the original paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
Executive Summary Disability is an issue that affects every individual, community, neighborhood, and family in the United States. It is more than a medical issue; it is a costly social, public health, and moral issue. About 35 million Americans (one in every seven) have disabling conditions that interfere with their life activities. More than 9 million people have physical or mental conditions that keep them from being able to work, attend school, or maintain a household. More than half of the 4-year increase in life expectancy between 1970 and 1987 is accounted for by time spent with activity limitations. Disabilities are disproportionately represented among minorities, the elderly, and lower socioeconomic populations. Of the current 75-year life expectancy, a newborn can be expected to experience an average of 13 years with an activity limitation. Annual disability-related costs to the nation total more than $170 billion. Disability is the expression of a physical or mental limitation in a social context —the gap between a person's capabilities and the demands of the environment. People with such functional limitations are not inherentlydisabled, that is, incapable of carrying out their personal, familial, and socialresponsibilities. It is the interaction of their physical or mental limitations withsocial and environmental factors that determines whether they have a disability. Most disability is thus preventable, which will not only significantly improvethe quality of life for millions of Americans but also could save many billionsof dollars in costs resulting from dependence, lost productivity, and medical care. The pattern of conditions that cause disability is complex and difficult to EXECUTIVE SUMMARY 1About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
summarize. For young adults, mobility limitations such as those caused by spinal cord injuries, orthopedic impairments, and paralysis are the mostcommon causes. For middle-aged and older adults, chronic diseases, especiallyheart and circulatory problems, predominate as causes of limitation. Figure 1 shows the age-specific prevalence rates for activity limitation according to fivegroups of causes; Figure 2 shows the proportion in each age group ascribed to each of the groups of conditions. Modern medicine's success in averting the death of many people who sustain life-threatening diseases and injuries often entails, as a consequence, theloss of at least some functional capacity. Indeed, the successful lifesavingtechniques of modern medicine are adding to the population of people withdisabilities. For example, in the 1950s, only people with low-level paraplegia were generally expected to survive; today, even people with high-level quadriplegia are surviving and living lives of high quality. Indeed, onecommentator has characterized the growing numbers of people with chronicconditions as the ''failures of successes" achieved with medical technology. Tohelp these individuals restore functional capacity, avert further deterioration infunctioning, and maintain or improve their quality FIGURE 1 Prevalence of main causes of activity limitation, by age, 1983-1985. Source: Calculated from La Plante, 1988. EXECUTIVE SUMMARY 2About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
of life, it is important to foster programs that emphasize rehabilitation and the prevention of secondary conditions. Partly for this reason the committeefocused its report on prevention strategies for people who already havepotentially disabling conditions, that is, on secondary and tertiary levels ofprevention. In other words: FIGURE 2 Percentage distribution of main causes of activity limitation, by age, 1983-1985. Source: Calculated from La Plante, 1988. What can be done to prevent an impairment or functional limitation that results from injury, a birth defect, or chronic disease from becoming a disability? What are the risks for developing a disability (or secondary condition), and how can they be controlled? How is quality of life affected by disabling conditions, and what can be done to improve it? Good disability prevention strategies must be built on strong basic knowledge of the relationships between risk factors, disabling conditions,quality of life, and secondary conditions. Until now, approaches to theprevention of disability have been significantly limited by the narrowness ofconceptual views and inadequate data. This report gives special attention toissues EXECUTIVE SUMMARY 3About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
related to conceptual clarity and data needs and presents a model for studying the progression of conditions toward disability. The disability model describedin this report should facilitate the development of improved surveillancesystems, an epidemiology of disability, and more effective means of prevention. Interfering with the development of effective prevention programs, however, is the lack of an effective public health surveillance network formonitoring the incidence and prevalence of disability, including predisposingrisk factors. Without such a surveillance network, programs and policiesintended to prevent disability will continue to be based on educated guesses rather than a solid data base that describes the sizable population of people that have either disabilities or a high risk of developing them. Furthermore, thefragmentation, gaps, and redundancies in the nation's disability-related programs— the focus of criticism in other quarters besides this report —will persist. Although the current system for providing medical and social support to people with disabling conditions suffers from many inadequacies, most of theelements required for longitudinal care, as recommended by this committee, arelikely to be in place. Additional financial resources may not be needed for manyof the prevention measures noted here so much as a commitment to coordination, program planning, and service delivery to form a network that is readily accessible by consumer populations. TOWARD A COMPREHENSIVE APPROACH TO DISABILITY PREVENTION Despite an officially stated national goal of independence and equality of opportunity for people with disabilities, current approaches to preventingdisability and improving the lives of people with disabling conditions lackconceptual clarity and unity of purpose. Reducing the prevalence and incidenceof disability poses challenges on many fronts and requires coherent,comprehensive responses rather than the piecemeal actions that now characterize medical, rehabilitative, and social programs related to disability. In short, disability prevention requires new thinking, new collaborations amongresearchers, new relationships between agencies and organizations, both publicand private, new approaches to delivering services, and new societal attitudes. In developing its framework for a national disability prevention program, the committee sought to identify issues and needs that cut across the majorcategories of health conditions that can result in disability. It developed a modelfor disability and disability prevention (see Chapter 3 ) based on the work of Saad Nagi and the World Health Organization, and expanded it to include risk factors and quality of life. The committee then reviewed current knowledge in four major areas; developmental disabilities ( Chapter 4 );EXECUTIVE SUMMARY 4About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
injury-related disabilities, specifically those related to spinal cord injury and traumatic brain injury ( Chapter 5 ); disabilities associated with chronic diseases and aging ( Chapter 6 ); and secondary conditions associated with primary disabling conditions ( Chapter 7 ). Needs and challenges specific to each category of disability are identified in the individual chapters. Time and resources did not permit a review of all areas of disability. Mental health conditions, for example, are discussed only briefly as secondaryconditions and, to a lesser extent, as primary conditions. Chapter 8 discusses the obstacles to and opportunities for a comprehensive approach to disabilityprevention, and Chapter 9 presents the committee's recommendations for a national agenda for the prevention of disability. A summary of Chapters 3-7 appears below, beginning with a discussion of the committee's model and followed by the committee's recommendations for a national agenda for the prevention of disability ( Chapter 9 in its entirety). A Model of Disability There are two major conceptual frameworks in the field of disability: the International Classification of Impairments, Disabilities, and Handicaps(ICIDH), and the "functional limitation," or Nagi, framework, which is notaccompanied by a classification system. The ICIDH is a trial supplement to the World Health Organization's International Classification of Diseases; it hasstimulated extensive discussions of disability concepts, received both positiveand negative reviews in the literature, and is used widely around the world. Several European countries including France and the Netherlands have adopted the ICIDH and use it extensively in administrative systems and clinical settings. As a classification system that has received broad international sponsorship the ICIDH deserves considerable attention, and the WHO is to be commended forits efforts in developing a system that has met with such success. As has beenpointed out in the literature, however, the ICIDH is neither a classification ofpersons nor a research tool. The original intent of the ICIDH classification system was to provide a framework to organize information about the consequences of disease. As such,it has been considered by some as an intrusion of the medical profession intothe social aspects of life —a "medicalization of disablement. " The WHO is planning to revise the ICIDH in the near future, which will provideopportunities for significant improvements. Both frameworks (i. e., the ICIDH and the Nagi or functional limitation framework) have four basic concepts. In the ICIDH the four concepts aredisease, impairment, disability, and handicap. In the Nagi framework, the fourconcepts are pathology, impairment, functional limitation, and disability. Bothframeworks recognize that whether a person performs a socially expectedactivity depends not simply on the characteristics of the person EXECUTIVE SUMMARY 5About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
but also on the larger context of social and physical environments. Conceptual clarity, however, seems to be a problem with some of theclassifications in the ICIDH. As discussed in the literature, some of the ICIDHclassifications are confusing; for example, certain social role limitations (e. g.,family role, occupational role) are classified as "behavior disabilities," insteadof "occupation handicaps" or "social integration handicaps. " Another example cited is the distinction between "orientation handicaps" and disabilities associated with self-awareness, postural, or environmental problems. In considering the options for a conceptual framework, the committee was faced with the fact that the ICIDH includes the term "handicap" in itsclassification. Traditionally, handicap has meant limitations in performance, placing an individual at a disadvantage. Handicap sometimes has been used toimply an absolute limitation that does not require for its actualization anyinteraction with external social circumstances. In recent years, the term hasfallen into disuse in the United States, primarily because people with disabling conditions consider handicap to be a negative term. Yet the shadow of "handicap" as a commonly used term hovers behind the concept of quality oflife, and has the effect of reducing quality of life even though impairment,functional limitation, and disability do not necessarily do so. Much as the term"cripple" has gone out of style, handicap seems to be approaching obsolescence,at least within the community of people with disabilities in the United States. The committee concurs with those who have noted internal inconsistencies and a lack of clarity in the ICIDH concepts of disability and handicap, and itnotes the need for its pending revision. It prefers not to use handicap in thisreport and offers an alternative framework that does not focus on theconsequences of disease. The committee's alternative framework draws on thewidespread acceptance and success of the ICIDH and the conceptual clarity and terminology of the Nagi framework, and then adds risk factors and quality of life into a model of the disabling process. Committee members found that thisframework and model improved their understanding of the relationships amongand between components of the disabling process and helped them identifystrategic points for preventive intervention. It is hoped that this framework willbe considered as a viable alternative in the revisions of the WHO ICIDH. The conceptual framework used in this report is composed of four related but distinct stages: pathology, impairment, functional limitation, and disability. In the course of a chronic disorder, one stage can progress to the next. Butdepending on the circumstances, progressively greater loss of function need notoccur, and the progression can be halted or reversed. Thus disability preventionefforts can be directed at any of the three stages that precede disability, as well as at the disability stage itself, where efforts can focus on reversal of disability, restoration of function, or prevention of EXECUTIVE SUMMARY 6About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
complication (secondary conditions) that can greatly exacerbate existing limitations or lead to new ones. Figure 3 summarizes the four stages of the framework. As mentioned above, the committee's model for disability builds on the conceptual frameworks of Nagi and the WHO, placing disability within theappropriate context of health and social issues ( Figure 4 ). It depicts the interactive effects of biological, environmental (physical and social), andlifestyle and behavioral risk factors that influence each stage of the disablingprocess; the relationship of the disabling process to quality of life; and thestages of the disabling process that often precede disability. A brief descriptionof the components of the model follows. EXECUTIVE SUMMARY 7About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
Risk Factors Risk factors are biological, environmental (social and physical), and lifestyle or behavioral characteristics that are causally associated with health-related conditions. Identifying such factors can be a first step towarddetermining a mechanism of action in the disabling process and then developingpreventive interventions. The disability research and service communities havenot yet adopted a systematic, comprehensive conceptual model for understanding disability risk factors. A model that incorporates biological, environmental (physical and social), and lifestyle and behavioral risk factorcategories will help move the disability research and service communitiesnearer to a more unified understanding of disability and disability prevention. Quality of Life The quality of life concept subsumes many aspects of personal well-being that are not directly related to health. It is becoming increasingly clear,however, that health is the product of a complex array of factors, many of whichfall outside the traditional province of health care. Similarly, the health of thenation's citizens has commercial, economic, and social importance. Thus quality of life is assuming greater importance and acceptance, and its enhancement, in addition to curing disease or improving survival, is becoming an accepted goalof the health-related professions. As depicted in Figure 4, quality of life affects and is affected by the outcomes of each stage of the disabling process. Within the disabling process,each stage interacts with an individual's quality of life. There is no universalthreshold —no particular level of impairment or functional limitation —at which people perceive themselves as having lost their personal autonomy anddiminished the quality of their lives. Yet perceptions of personal independence and quality of life are clearly important in determining how individuals respond to challenges at each of the four stages of the disabling process. Similartheoretical models for health status and quality of life have been described byothers. The Disabling Process At the center of the model is the disabling process. Although it seems to indicate a unidirectional progression from pathology to impairment tofunctional limitation to disability, and although a stepwise progression oftenoccurs, progression from one stage to another is not always the case. Anindividual with a disabling condition might skip over components of the model, for example, when the public's attitude toward a disfiguring impairment causes no functional limitation but imposes a disability by affecting EXECUTIVE SUMMARY 8About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
FIGURE 4 Model of disability showing the interaction of the disabling process, quality of life, and risk factors. Three types of risk factors are included: biological (e. g., Rh type); environmental (e. g., lead paint [physical environment], access to care [social environment]); and lifestyle and behavior(e. g., tobacco consumption). Bidirectional arrows indicate the potential for "feedback. " The potential for additional risk factors to affect the progression toward disability is shown between the stages of the model. These additional risk factors might include, depending on the stage of the model, diagnosis, treatment, therapy, adequacy of rehabilitation, age of onset, financial resources, expectations, and environmental barriers. EXECUTIVE SUMMARY 9About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
social interaction. Also, the effects of specific stages in the model can be moderated by such interventions as assistive devices. Similarly, environmentalmodification (e. g., elimination of physical obstacles and barriers) is animportant form of disability prevention, as is such landmark antidiscriminationlegislation as the recently enacted Americans with Disabilities Act. A variety of personal, societal, and environmental factors can influence the progression of a disabling condition from pathology to disability. They can alsoaffect the degree of limitation or disability a person experiences and theoccurrence of secondary conditions. A few of these factors are health status,psychological state, socioeconomic status, educational attainment andvocational training, climate, and the presence of multiple conditions anddisabilities. As indicated in the model, quality of life is an integral part of the disabling process. Research indicates that a person's perception of quality of lifeinfluences his or her responses to potentially disabling conditions and thereforeoutcomes. In turn, each successive stage in the disabling process poses anincreasing threat of diminished quality of life. Measures that reduce this threat — for example, providing assistive technology that enables an individual to remain autonomous in at least some roles or modifying the work site to accommodate a person's limitations —can be effective interventions for preventing disability. Thus disability is the product of a complex interactive process involving biological, behavioral, and environmental (social and physical) risk factors, andquality of life. Although disability always begins with a pathological condition,it is not inevitable even for people with incurable diseases or injury-causedconditions that carry the highest risks. There are usually, if not always, manypoints in the progression to disability at which to intervene and improve thequality of life for people with potentially disabling conditions. The next four sections briefly discuss some of the information from each of the focus chapters. In the full report, these chapters each cover the magnitudeof disability related to that category of disability, data needs, and preventionstrategies. Although some primary prevention measures are described anddiscussed, the emphasis in the chapters and in these sections is on preventionfor people who already have potentially disabling conditions (i. e., secondary and tertiary prevention). Developmental Disabilities Developmental disabilities affect about 4 percent of the population under age 21 and are caused by a variety of conditions, including cerebral palsy,seizure disorders, mental retardation, hearing and vision impairments, autism,structural birth defects (e. g., spina bifida) that cannot be corrected by EXECUTIVE SUMMARY 10About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
surgery, and social and intellectual deprivation. These conditions, which usually persist throughout an individual's lifetime, are diagnosed in an estimated 80,000children each year. Because of their early onset, developmental disabilitiesaccount for a large percentage of the cumulative total of disability years 1 for all age groups. In 1984, federal, state, and local governments spent an estimated$16. 5 billion on programs and services for children with developmental disabilities. Not included in this cost estimate are programs and services for the additional 5-10 percent of all children who have learning disorders and requirespecial education services. Research has led to a number of important measures for preventing potentially disabling conditions that are acquired during childhood or that arethe product of events during prenatal development. For example, lead screeningfollowed by environmental lead abatement programs can reduce the incidenceof lead toxicity. The removal of lead from gasoline has significantly reducedenvironmental exposure to lead. In the late 1970s an estimated 1. 5 million children ages 6 months to 5 years had blood lead levels greater than or equal to 25 µmg/dl. It has also been estimated that, in 1984, 200,000 children (ages 6months to 5 years) in standard metropolitan statistical areas (SMSA) had bloodlead levels greater than or equal to 25 µg/dl. Recent studies indicate, however,that adverse effects on the fetus and child probably begin at blood lead levels of15 µg/dl and below. A lower recommended threshold (currently 25 µg/dl) willprobably be set, and more aggressive measures are being advocated forremoving lead from the environment. Interventions to prevent many birth defects and developmental disabilities have not yet been developed. Even when the means are known, they are oftennot adopted. For example, abstinence from alcohol during pregnancy preventsfetal alcohol syndrome, which can result in mental retardation, growthdeficiency, facial abnormalities, and other conditions. The prevalence of fetalalcohol syndrome in the general population is estimated to be 1. 7 cases per1,000 births, but much higher rates have been reported for certain groups. Injury-Related Disabilities About 57 million Americans sustain injuries each year at a total lifetime cost of $158 billion. For every death caused by injuries —about 142,000 annually —16 people are hospitalized and 381 additional people incur injuries that do not require inpatient treatment. About $108 billion in economic costs, more thantwo-thirds of the total estimated lifetime cost of injuries, stem from nonfatalinjuries. 1 A "disability year" is a year of life lived with a defined disability. Similar to "years of potential life lost," disability years provide an indicator of public health significance. EXECUTIVE SUMMARY 11About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
In this report, the committee focused on head injuries and spinal cord injuries, which can cause significant physical, neurological, and psychosocialdeficits and result in economic costs per person that are among the highest forinjury-caused pathologies and impairments. Each year, about 1. 3 million peoplesuffer head injuries, and 70,000 to 90,000 of these individuals sustain moderateto severe traumatic brain injuries. Total annual medical costs for people who sustain head injuries were estimated to be $12. 5 billion in 1982. At highest risk of sustaining traumatic brain injuries are people between the ages of 15 and 24,especially males. Demographic studies indicate that the incidence of traumaticbrain injury is greatest for nonwhite urban populations and lowest for whitepopulations living in suburban and rural areas. Motor vehicle collisions andfalls are the leading causes of such injury. To the extent that they arediscernible, trends over the past 10 years indicate that improvements inemergency medical services and acute management of head injuries havesubstantially increased the proportion of people who survive these injuries. Each year, between 10,000 and 20,000 people sustain spinal cord injuries. Estimated lifetime costs for consequent medical treatment for such injuriesrange from $010,400 to $751,900, depending on the extent of injury. The mostcommon major impairments are muscle paralysis and loss of sensation. Olderadolescent males and young men are at greatest risk of spinal cord injury. Motorvehicle collisions and falls are the leading causes, followed by acts of violence, especially those involving firearms. In the 1950s, only people with low-level paraplegia were generally expected to survive; today, even people with high-level quadriplegia survive and live lives of high quality. A national study foundthat quadriplegia continues to be the outcome for half of all people who sustainspinal cord injuries; however, the proportion of people with quadriplegia whohave neurologically incomplete lesions and therefore retain some motor controland sensation increased from 38 percent in 1973 to 54 percent in 1983. Disabilities Associated with Chronic Disease and Aging The prevalence of chronic disease —incurable, long-lasting pathologies such as osteoarthritis, cancer, heart disease, and diabetes —has increased to near-epidemic proportions in the United States. Almost half of all working-agepeople have one or more chronic conditions. An estimated 80 percent of theelderly have a chronic condition, and about 40 percent have some form of activity limitation due to chronic conditions. Chronic conditions increase a person's risk of disability, although the degree of risk varies among conditions. Indeed, the most prevalent conditions,such as sinusitis, hypertension, and hearing impairment, generally EXECUTIVE SUMMARY 12About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
pose low risks of activity limitation, whereas the least prevalent conditions, such as multiple sclerosis and lung or bronchial cancer, pose very high risks ofdisability. Thus conditions that frequently result in disability may be moreappropriate targets for primary prevention strategies, and those that pose lowerrisks of developing into disability may be more appropriately addressed bysecondary or tertiary prevention strategies. Many chronic conditions are associated with the aging process, which contributes to the widely held stereotype that aging is synonymous with adecline in functional capacity. An increasing body of research contradicts thisstereotype, demonstrating that the physical and mental health status of elderlypeople can improve as well as deteriorate. Studies show, for example, that theadoption of health-promoting practices even late in life is beneficial. Potentially debilitating problems such as those associated with incontinence and osteoporosis are amenable to skillful rehabilitation. Prospects are good forincreasing the number of disability-free years in the average life span, but muchmore research on the aging process, on potentially effective interventions, andon the delivery and coordination of services is needed. Secondary Conditions Associated with Disability People with disabling conditions are often at risk of developing secondary conditions that can result in further deterioration in health status, functionalcapacity, and quality of life. Secondary conditions by definition are causallyrelated to a primary disabling condition and include decubitus ulcers,contractures, physical deconditioning, cardiopulmonary conditions, and mentaldepression. Considerable research has been done on the etiology and preventionof certain secondary conditions (e. g., pressure sores); in general, however, secondary conditions have received very little attention from researchers and health care and social service providers, despite the causal relationship thatmakes many of them easily predictable. Much of what is known about the prevention of many secondary conditions is incidental and often results from deduction based on individual orclinical experience. There is a clear need for systematic evaluations of currentlyused interventions, as well as for research devoted to developing treatmentprotocols for people with specific types of disabilities. Such protocols would listassessment and treatment strategies for patients whose conditions matched prespecified characteristics, addressing not only medical needs but also environmental (social and physical) and behavioral risk factors associated withsecondary conditions. Implementation of the protocols, of course, will requirethe participation of a wide spectrum of professionals in medical and nonmedicalfields, as well as the people with disabling conditions themselves, their families,personal attendants, and advocates. EXECUTIVE SUMMARY 13About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
Also requiring greater attention, in both research and service delivery, is the role of assistive technology. Such technology promotes personalindependence, facilitates the performance of tasks related to personal, familial,and social roles, and helps prevent debilitating, costly secondary conditions. However, outmoded concepts held by public and private insurance programs ofwhat is ''medically necessary" often result in restriction or denial of coverage for assistive technologies. This problem indicates the need for improved programs of research and services that focus on secondary and tertiaryprevention of disability —in the committee's model, halting progress toward disability and preventing secondary conditions. RECOMMENDATIONS As described and discussed throughout the report, the social and environmental aspects of disability and disability prevention are of criticalimportance and help to define limitations in the role of medicine in disabilityprevention. Indeed, the major disability-related roles for the fields of publichealth and medicine involve the prevention, early detection, diagnosis, treatment, and rehabilitation of potentially disabling conditions. Once such a condition is identified, however, the means of disability prevention go beyondrehabilitative restoration of function to include important social and economicfactors. Increasing attention to and understanding of the broad range of issues related to disability in this country recently resulted in the Americans with Disabilities Act signed into law by President Bush on July 26, 1990. That sameimpetus, amplified by the desire for accessible, affordable quality health carefor all, led to the committee's finding that there is an urgent need for a well-organized, coordinated national disability prevention program. An agenda for such a program is presented on the next page. The agenda includes theprogram's stated goal and five strategies for its achievement: organization andcoordination of the national program, surveillance, research, access to care andpreventive services, and professional and public education. The full set ofrecommended measures to support each strategy is presented in Chapter 9 ; some of them are listed below (their numbers correspond to the numbers in Chapter 9 ). Organization and Coordination There are a number of disability-related programs in the federal government, but currently no one agency has been charged with leadershipresponsibilities that focus on prevention. The committee's recommendationsbelow suggest mechanisms to organize and coordinate a national disability prevention program and to provide input from the diverse groups affected by disability. EXECUTIVE SUMMARY 14About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
A NATIONAL AGENDA FOR THE PREVENTION OF DISABILITY GOAL To reduce the incidence and prevalence of disability in the United States, as well as the personal, social, and economic consequences of disability in order to improve the quality of life for individuals, families, and the population at large. STRATEGIES Organization and Coordination —Establish leadership and administrative responsibility for implementing and coordinating the National Agenda for the Prevention of Disability within a single unit of thefederal government. Implementation of the agenda should be guided by a national advisory committee, and progress should be critically evaluated periodically. In addition to federal leadership, achieving the goals of the agenda will require the strong, sustained participation of the state, local, and private sectors. Surveillance —Develop a conceptual framework and standard definitions of disability and related concepts as the basis for a national disability surveillance system. Such a system should be designed to (1) characterize the nature, extent, and consequences of disability and antecedent conditions in the U. S. population; (2) elucidate the causalpathways of specific types of disability; (3) identify promising means of prevention; and (4) monitor the progress of prevention efforts. Research —Develop a comprehensive national research program on disability prevention. The research should emphasize longitudinal studies and should focus on preventive and therapeutic interventions. Special attention should be directed to the causal mechanisms whereby socioeconomic and psychosocial disadvantage lead to disability. Training young scientists for careers in research on disability prevention shouldbecome a high priority. Access to Care and Preventive Services —Eliminate the barriers to access to care, especially for women and children, to permit moreeffective primary prevention and prevent progression of disability and the development of secondary conditions. Existing programs of proven effectiveness should be expanded, and new service programs should be introduced. Returning persons with disabling conditions to productive, remunerative work is a high priority. Professional and Public Education —Educate health professionals in the prevention of disability. Foster a broad public understanding of the importance of eliminating social, attitudinal, and environmental barriers tothe participation of people with functional limitations in society and to the fulfillment of their personal goals. Educate health professionals, people with disability, family members, and personal attendants in disability prevention and preventing the development of secondary conditions. EXECUTIVE SUMMARY 15About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
Leadership of the National Disability Prevention Program The congressionally mandated role of the National Council on Disability (NCD) is to provide advice and make recommendations to the President and to Congress with respect to disability policy. In keeping with its charter, thecouncil has been and should continue to be an effective leader in developingdisability policy in such areas as education, health care services, and civil rights. In 1986 the NCD identified the need for a national program for disability prevention and recommended to the President and Congress that such aprogram be established in the Centers for Disease Control (CDC). In 1988 CDCinitiated the Disabilities Prevention Program to build capacity in disabilityprevention at the state and local levels, establish systems of surveillance fordisabilities, use epidemiological approaches to identify risks and targetinterventions, and provide states with technical assistance. It is the only federal program that has been charged specifically with disability prevention. Its initial focus has been prevention of the more readily identifiable injuries anddevelopmental disabilities, and the secondary conditions that are oftenassociated with them. The committee endorses the emerging federal leadership in disability prevention at CDC. The agency's traditional strengths —epidemiology, surveillance, technology transfer, disease prevention, and communication andcoordination with state, local, and community-based public health activities — are consonant with the needs of a national program. Moreover, CDC hasdemonstrated its leadership in the development and effective implementation ofinterventions in numerous specific public health situations, in quality control forscreening programs and their implementation, in the development of school and other public health curricula, and in the evaluation of public health service delivery programs. Given the magnitude of the public health problem disability presents and the large number of various types of disability-related public and privateprograms, there is a need for expansion and coordination of disabilityprevention activities. The committee's recommendations, which appear below,have been formulated to address that need and provide a framework for futureprogram development. The CDC Disabilities Prevention Program is a good first step in the development of such a framework. In addition, the informal relationship thatcurrently exists between it and the National Council on Disability appears to bea mutually beneficial one that has strengthened federal disability preventionactivity during its infancy. To the extent that such a relationship remainsbeneficial to developing a national program for disability prevention, it shouldcontinue. EXECUTIVE SUMMARY 16About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
RECOMMENDATION 1: Develop leadership of a National Disability Prevention Program at CDC To advance the goal and carry out the strategies of the national agenda, the committee recommends that the CDC Disabilities Prevention Program beexpanded to serve as the focus of a National Disability Prevention Program (NDPP). In assuming the lead responsibility for implementing the national agenda for the prevention of disability over the life course, the NDPP should coordinate activities with other relevant agencies, emphasizing comprehensive surveillance, applied research, professional and public education, and preventive intervention with balanced attention to developmental disabilities, injuries, chronic diseases, and secondary conditions. As the national program develops, with its emphasis on prevention of disability throughout the life course, it should focus on identifying andmodifying the biological, behavioral, and environmental (physical and social)risk factors associated with potentially disabling conditions, as well asmonitoring the incidence and prevalence of the conditions themselves. Theprogram should be conducted in cooperation and in partnership with state healthagencies and other public agencies. A major component of the program shouldbe the development at the state level of a sharply increased capacity to preventdisability. A disability prevention program of the scope and ambition envisioned by the committee will require much more than can be accomplished bygovernments acting alone. The active participation of all segments of society isrequired. RECOMMENDATION 2: Develop an enhanced role for the private sector The NDPP should recognize the key role of the private sector in disability prevention, including advocacy groups, persons with disabilities, business and other employers, the insurance industry, academia, the media, voluntary agencies, and philanthropies. Indeed, the potential contributions of the private sector in achieving the program's goals cannot be emphasized too strongly. Its role encompasses the provision of employment opportunities, modification of the workplace, research in and development of assistive technology, provisionof appropriate insurance, and development of a national awareness program. One way to involve the private sector might be to establish an independent forum on disability policy for the promotion, coordination, and resolution ofdisability-related issues that would facilitate prevention. Addressing many ofthese issues requires the collaborative support and involvement of EXECUTIVE SUMMARY 17About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
a broad array of scientists and informed leaders from both the private and public sectors. The purpose of the forum would be to improve policymaking through acontinuing dialogue among individuals and groups that play a significant role inshaping policy and public opinion. Areas for consideration might include accessto assistive technology and personal assistance services, gaps in healthinsurance coverage, family leave policies, and implementation issues related to the Americans with Disabilities Act. Advisory Committee As stated throughout the full report, disability is a public health and social issue. Thus a national disability prevention program will be centrally dependenton public attitudes toward people with disabilities and on the way communityactivities are organized, which includes access to housing, public transportation,and the workplace. Equally important is the reduction of prejudice and discrimination toward people with disabilities. An agenda for disability prevention will require cooperation among all levels of government; the health,social services, and research professions; business; educational institutions;churches; and citizens' organizations throughout the country. RECOMMENDATION 3: Establish a national advisory committee An advisory committee for the NDPP should be established to help ensure that its efforts are broadly representative of the diverse interests in the field. The advisory group should include persons with disabilities and their advocates; public health, medical, social service, and research professionals; and representatives of business, insurance, educational, and philanthropic organizations, including churches. The role of the advisory committee wouldbe to advise CDC on priorities in disability prevention research and the nationwide implementation of prevention strategies, as well as to assess progress toward the goal of the national agenda for the prevention of disability. The advisory committee should be appointed by the Department of Health and Human Services and meet at least three times a year. In keeping with its role in regard to disability policy, the National Council on Disability should be a permanent member of this committee. Interagency Coordination and Periodic Review The fragmentation of disability-related activities and the lack of continuity of care are highly disruptive to preventive efforts. Part of the problem derivesfrom the fact that essential services are funded and provided by variousagencies and by different levels of government without a clear focus ofauthority and responsibility, leading to gaps in services. The lack of EXECUTIVE SUMMARY 18About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
coordination of health and medically related rehabilitation activities and social services is a long-standing problem that is not easily rectified. Improvementswill require energy and direction, a focus on prevention, and a clear strategy forcoordination, cooperation, and integration among several federal programs asthey are administered at the local level. These federal programs include thoseconcerned with health care (Health Care Financing Administration), disability benefits (Social Security Administration and the Department of Veterans Affairs), vocational rehabilitation (Department of Education), communitysupport (National Institute of Mental Health), and housing (Department of Housing and Urban Development). Thus responsibility for planning,coordination, and evaluation of these activities should be highly placed in thefederal government (e. g., in the Office of the Secretary of the Department of Health and Human Services) to facilitate the type of coordinated leadership atthe federal level necessary to ensure cooperation at the local level. RECOMMENDATION 4: Establish a federal interagency council A standing Interagency Council on Disability Prevention should be established by the Secretary of Health and Human Services. The interagency council should be charged with examining and developing conjoint activities indisability prevention and with identifying existing policies that inhibit disability prevention and rehabilitation. More specifically, the interagency council should be convened semiannually to identify, examine, and foster enhanced disability prevention strategies by (1) recommending the elimination of conflicting public policies and coordinating and integrating programs, (2)developing new policy initiatives, (3) improving service delivery, and (4) setting research priorities. The interagency council should have a permanent staff and issue public reports to the Secretary of Health and Human Services, Congress, and the National Council on Disability. The members of the interagency council should be high-level administrators drawn from the major agencies involved in the various aspects ofdisability, which include the following: Centers for Disease Control; Health Care Financing Administration; Alcohol, Drug Abuse, and Mental Health Administration; National Institute on Disability and Rehabilitation Research; Health Resources and Services Administration (HRSA), including the Maternal and Child Health Bureau; Agency for Health Care Policy and Research; Social Security Administration; National Institutes of Health; Consumer Product Safety Commission; Bureau of the Census; and other agencies within the Departments of Health and Human Services, Housing and Urban Development,Education, Transportation, Labor, Defense, Veterans Affairs, and others asappropriate. EXECUTIVE SUMMARY 19About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
Surveillance Although information on the incidence and prevalence of disability is available, it is organized in so many different ways that accurate, useful analysisis impeded. Estimates of the prevalence of disability vary by more than 100percent. One difficulty is the conceptual confusion surrounding disability andits antecedent conditions. Until there is a consistently applied, widely accepteddefinition of disability and related concepts, the focus for preventive action and rehabilitation will remain uncertain. Conceptual Framework Conceptual confusion regarding disability is not limited to the United States, as indicated by the World Health Organization's development of the International Classification of Impairments, Disabilities, and Handicaps. The WHO classification scheme, which seeks to establish uniformity in the use ofimportant concepts, is an important step toward international comparative studies of disability. The committee, however, saw a need to develop its own system and in this report presents a conceptual framework and model derivedfrom the works of Nagi and the WHO that differs from both primarily in that itincorporates risk factors and quality of life. What is needed now is internationalagreement on a logical, conceptual system that would result in comparabledisability statistics across nations. Existing frameworks represent only the initialsteps in a process of conceptual refinement and evaluation. RECOMMENDATION 6: Develop a conceptual framework and standard measures of disability The CDC, which is responsible for surveillance of the nation's health, should design and implement a process for the development and review of conceptualframeworks, classifications, and measures of disability with respect to their utility for surveillance. This effort should involve components of the private sector that collect disability data, as well as federal agencies including the National Institutes of Health; Alcohol, Drug Abuse, and Mental Health Administration; National Council on Disability; Office of Human Development Services (a component of the Department of Health and Human Services); Agency for Health Care Policy and Research; Health Care Financing Administration; Bureau of the Census; Department of Veterans Affairs; Social Security Administration; and HRSA's Maternal and Child Health Bureau. The objective should be consensus on definitions, measures, and a classification and coding system of disability and related concepts. These elements should then be adopted by all local, state, federal, and privateagencies that gather data and assemble statistics on disability. Collaboration EXECUTIVE SUMMARY 20About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
with the WHO and other international agencies should be encouraged in developing a classification system to obtain comparable disability data across nations. A National Disability Surveillance System Despite its significance as a public health and social issue, disability has received little attention from epidemiologists and statisticians; consequently,surveillance of disabling conditions is inadequate in many ways. Whendisability is a focus of attention, surveillance is more often concerned withcounting the number of people affected than with investigating its causes and secondary conditions. Without knowledge of the conditions and circumstances that can lead to disability, the problem in its many manifestations cannot befully understood, nor can effective prevention strategies be systematicallydeveloped. Disability prevention will require expanded epidemiological studies and surveillance to identify risk factors, the magnitude of risk, and the degree towhich risk can be controlled. Because disability is the product of a complexinteraction among behavioral, biological, and environmental (social andphysical) factors, epidemiological investigations must encompass a broad range of variables that influence the outcomes of mental and physical impairment. Current surveillance systems are condition specific, permitting identification,for example, of the risk factors associated with injuries. None of them, however,track the risk factors associated with the progression from pathology toimpairment to functional limitation to disability. Nor is there sufficient researchon the range of consequences associated with specific behaviors andcircumstances. Congenital and developmental conditions, injuries, and chronic diseases that limit human activity do not occur randomly within the general population. Epidemiological principles can be used to identify high-risk groups, to study theetiology, or causal pathways, of functional limitations and disabilities, and toevaluate preventive interventions. More specifically, epidemiology and surveillance could play an increased role in the prevention of disability by (1) accurately determining the dimensions of the populations of people withdisabilities, (2) identifying the causes of disabilities, (3) guiding thedevelopment and selection of preventive interventions, and (4) evaluating theimplementation of interventions. RECOMMENDATION 7: Develop a national disability surveillance system A national disability surveillance system should be developed to monitor over the life course the incidence and prevalence of (1) functional limitations and disabilities; (2) specific developmental disabilities, injuries,EXECUTIVE SUMMARY 21About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
and diseases that cause functional limitations and disability; and (3) secondary conditions resulting from the primary disability. The system should also monitor causal phenomena, risk factors, functional status, and quality of life, and provide state-specific data for program planning and evaluation of interventions. This system should be developed in cooperation with a broadrange of federal agencies and private organizations and be implemented as part of the National Disability Prevention Program. Research A wide variety of disability risk factors are associated with the spectrum of diseases and injuries that can lead to disability. These risk factors affect notonly the occurrence of the initial event but also the progression of pathologiesto impairments, functional limitations, and disabilities. To the extent that riskfactors can be eliminated or moderated, the incidence of initial disablingconditions and the progression toward disability can be limited. Much moreneeds to be known, however, and such knowledge can be acquired only througha broad range of research activities. Coordinated Research Program RECOMMENDATION 11: Develop a comprehensive research program A coordinated, balanced program of research on the prevention of disability associated with developmental disabilities, injury, chronic disease, andsecondary conditions should be an essential component of the National Disability Prevention Program. Emphasis should be placed on identifying biological, behavioral, and environmental (physical and social) risk factors over the life course that are associated with disability and secondary conditions and on developing effective intervention strategies. A continuing effort should be made to incorporate functional assessment and quality of life indicators into the research agenda and surveillance measures. Longitudinal Studies The process of developing a disabling condition, as well as the associated potential for secondary conditions, is complex and longitudinal. Yet mostavailable data on disability are cross-sectional, making it impossible toaccurately gauge the course of disability in relation to varying risk factors or theimpact of timely interventions on the development of disability. There is thus agreat need for longitudinal studies that effectively describe EXECUTIVE SUMMARY 22About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
the course of disability and identify the most strategic points for effective intervention. RECOMMENDATION 12: Emphasize longitudinal research A research program of longitudinal studies should be developed to determine the course of conditions and impairments that lead to disability and to identify the strategic points of preventive intervention. The research should emphasizethe prevention of secondary conditions, improved functional status, and improved quality of life. In addition, because rapid changes are occurring for people with disabling conditions in terms of health services, public attitudes, and opportunities for social participation, cohort studies are needed to assess the effects of these changes over the life course. Relationship of Socioeconomic Status Deeper understanding of the biological underpinnings of pathologies, impairments, and functional limitations is an obvious need, and this knowledgeis being pursued in a variety of biomedical research programs, such as thosesponsored by the National Institutes of Health and the Alcohol, Drug Abuse,and Mental Health Administration. Far less effort has been devoted to theinfluence of behavioral, physical and social environmental, and social factors on the development of disability. One transcendent problem, for example, is the high rate of disability among people of low socioeconomic status. Most studiesof disability attempt to control statistically for socioeconomic status because itis a powerful risk factor. Moreover, because socioeconomic status hassometimes been considered to be incidental to research investigations, therelationship between disability and socioeconomic status has rarely beenaddressed directly. RECOMMENDATION 13: Conduct research on socioeconomic and psychosocial disadvantage Research should be conducted to elucidate the relationship between socioeconomic and psychosocial disadvantage and the disabling process. Research that links the social and biological determinants of disability should result in improved understanding of the complex interactions leading to disability, an understanding that would help in developing new prevention strategies. Interventions There is a clear need to incorporate existing knowledge more efficiently into disability prevention. A concomitant need is to ascertain the effectiveness EXECUTIVE SUMMARY 23About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
of current approaches in the wide variety of situations in which disability occurs. All areas of prevention require critical evaluations of the effectivenessof the tools and methods used in the prevention of disability and secondaryconditions. The federal government spends about $60 billion annually for medical coverage and to supplement the incomes of people with disabilities; it spends arelatively small amount on research to identify practices and technologies thatcan prevent the initial occurrence of disability or limit complications amongpeople with disabilities to help them lead more productive lives. Moreover, the federal funding agencies that support biomedical research have not made prevention a high priority, and there has been little effort devoted to developingresearch programs on the prevention of disability and secondary conditions. RECOMMENDATION 14: Expand research on preventive and therapeutic interventions Research on the costs, effectiveness, and outcomes of preventive and therapeutic interventions should be expanded. The expanded research program should also include acute care services, rehabilitative and habilitative services and technologies, and longitudinal programs of care and interventions toprevent secondary conditions. The National Institute on Disability and Rehabilitation Research, the Department of Veterans Affairs, the National Institutes of Health, the Alcohol, Drug Abuse, and Mental Health Administration, and the Agency for Health Care Policy and Research should join with CDC to develop cooperative and collaborative research programs inthe biological, behavioral, and social sciences as they relate to disability prevention. These programs should also emphasize the translation of new findings into national prevention efforts that inform and educate people with disabilities, their families, personal attendants, and advocates, as well as clinical practitioners. Consideration should be given to approaches used in other countries (e. g., the Netherlands, Sweden, England, and France), where disability prevention is viewed from a broad perspective that includes socialand ethical implications and socioeconomic costs. Access to Care and Preventive Services Many persons with disabilities are not covered by Medicare or Medicaid and have little access to private coverage because they either are unemployed or have been rejected for insurance because of their disabilities. Thus the problem of access to care is even greater for people with disabilities than for the general American population. Moreover, persons with disabilities and those at risk ofdisability are disproportionately poor, making EXECUTIVE SUMMARY 24About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
it difficult for them to purchase insurance, make required copayments, or purchase essential services and equipment for their rehabilitation. In addition,poverty compounds the difficulties faced by those with disabilities in gainingrecognition of their needs (which are often complicated by the socialcircumstances associated with poverty) and in developing satisfactoryrelationships with health providers. Accessible, Affordable Quality Care The committee recognizes that the problems of access to health care are deeply embedded in the organization of the U. S. health insurance system and itsrelationship to employment and other issues. The committee is also aware thatresolution of many of the problems identified in this report will require afundamental restructuring of the financing and organization of the nation'shealth services. This committee was not charged with addressing these larger issues; nevertheless, its members feel strongly that the gaps in the nation's present system contribute to an unnecessary burden of disability, loss ofproductivity, and lowered quality of life, and that the United States must makebasic health services accessible to all. Thirty to forty million Americans, including millions of mothers and children, do not have health care insurance or access to adequate healthservices. Even those Americans who have health care insurance are rarelycovered for (and have access to) adequate preventive and long-term medicalcare, rehabilitation, and assistive technologies. These factors demonstrably contribute to the incidence, prevalence, and severity of primary and secondary disabling conditions and, tragically, avoidable disability. Recently, the U. S. Bipartisan Commission on Comprehensive Health Care (the Pepper Commission) recommended a universal insurance plan thatemphasizes preventive care and identifies children and pregnant women as thegroups whose needs should be addressed first. In addition, the American Academy of Pediatrics (AAP) has developed a specific proposal to provide health insurance for all children and pregnant women. The AAP proposalpresents several principles relative to ensuring access to health care, as well asestimates of program costs and a package of basic benefits. Many aspects of theproposal could have favorable effects on the cost of health care (e. g., prenatalcare should lower expenditures for intensive care of newborns and subsequentdisabling conditions). The committee believes that a system that provided accessible, affordable quality health care for all would have an enormous beneficial effect on theprevention of disability. Yet the economic and political hurdles to that end areformidable, and a near-term solution is not in sight. A first step that has beenproposed is to provide quality health care services for all mothers and children (up to age 18). These services have a high probability of EXECUTIVE SUMMARY 25About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
preventing disability; however, assessing or evaluating their cost implications was not part of the charge to this committee. RECOMMENDATION 16: Provide comprehensive health services to all mothers and children Preventing disability will require access by all Americans to quality health care. An immediate step that could be taken would be to ensure the availability of comprehensive medical services to all children up to the age of 18 and to their mothers who are within 200 percent of the poverty level; in addition,every pregnant woman should be assured access to prenatal care. When provided, these services should include continuous, comprehensive preventive and acute health services for every child who has, or is at risk of developing, a developmental disability. In certain circumstances —for example, providing prenatal care for the prevention of low birthweight —the economic consequences have been shown to be favorable, but they need to be explored further in other areas of health care delivery. Research on prenatal care has demonstrated that comprehensive obstetric care for pregnant women, beginning in the first trimester, reduces the risk ofinfant mortality and morbidity, including congenital and developmentaldisability. Researchers also have documented that women who have the greatestrisk of complications during pregnancy —teenagers and women who are poor — are also the least likely to obtain comprehensive prenatal care. Furthermore, in its 1985 report, Preventing Low Birthweight , the IOM showed conclusively that, for each dollar spent on providing prenatal care to low-income, poorlyeducated women, total expenditures for direct medical care of their low-birthweight infants were reduced by more than $3 during the first year of life. RECOMMENDATION 17: Provide effective family planning and prenatal services Educational efforts should be undertaken to provide women in high-risk groups with the opportunity to learn the importance of family planningservices and prenatal care. Access to prenatal diagnosis and associated services, including pregnancy termination, currently varies according to socioeconomic status. The committee respects the diversity of viewpoints relative to those services but believes they should be available to all pregnant women for their individual consideration as part of accessible, affordablequality care. Even among privately or publicly insured people with disabilities, access to needed services is often a problem. Coverage may be limited by an EXECUTIVE SUMMARY 26About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
arbitrarily defined ''medical necessity" requirement that does not permit reimbursement for many types of preventive and rehabilitative services andassistive technologies. Insurance policies tend to mirror the acute careorientation of the U. S. medical system and generally fail to recognize theimportance and value of longitudinal care and of secondary and tertiaryprevention in slowing, halting, or reversing deterioration in function. The presumption, which has never been thoroughly evaluated, is that rehabilitative and attendant services, assistive technology, and other components oflongitudinal care are too costly or not cost-effective. Access to health care, particularly primary care, is a major problem for persons with disabilities. Many report that they have great difficulty finding aphysician who is knowledgeable about their ongoing health care needs. Theyalso have problems obtaining timely medical care and assistive technology thatcan help prevent minor health problems from becoming significantcomplications. National data indicate that, relative to the general population, person with disabilities, regardless of age, have high rates of use of health care services such as hospital care. The problem of access to care for persons with disabilities transcends the availability of insurance of a regular relationship with a health professional(although for many large gaps exist in both these areas). More important is thatthe person have access to appropriate care during the full course of a disablingcondition. Such care should be provided in a way that prevents secondaryconditions and maximizes the person's ability to function in everyday socialroles. It must have continuity and not be restricted by arbitrary rules that limit services necessary for effective rehabilitation and participation in society. Persons with disabilities often face enormous impediments to obtaining thecoordinated services they need to prevent secondary conditions and improvetheir opportunity for successful lives. Such impediments include (1) lack ofsupport from insurance and other funding agencies, (2) lack of locally availableservices, and (3) absence of local coordinating mechanisms. RECOMMENDATION 18: Develop new health service delivery strategies for people with disabilities New health service delivery strategies should be developed that will facilitate access to services and meet the primary health care, health education, and health promotion needs of people with disabling conditions. These strategies should include assistive technologies and attendant services that facilitateindependent living. Access to Vocational Services Vocational services are crucial to ensure that return-to-work goals are achieved. These services may include counseling and work readiness evaluations,EXECUTIVE SUMMARY 27About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
job training, job placement, work-site modification, and postemployment services (e. g., Projects with Industry) to ensure satisfactory adjustment andassistance in sustaining employment. RECOMMENDATION 22: Provide comprehensive vocational services Vocational services aimed at reintegrating persons with disabilities into the community and enabling them to return to work should be made financially and geographically accessible. Professional and Public Education The prevention of disability requires not only access to care and restructuring of services but also a radically different mind-set among many health and other professionals (e. g., psychologists, sociologists, educational specialists) and the general public. As the committee observes throughout itsreport, the attitudes and behavior of health professionals and the public couldeither facilitate effective coping and productive lives for persons withdisabilities or erect obstacles in their path. For example, many secondaryconditions are preventable, but health professionals often are not familiar withthe intervention strategies that can be used, and may provide inappropriate careas a result. Education of Professionals The committee notes that the field of physical medicine and rehabilitation is one of only a few medical specialties with a shortage of physicians. This situation is not surprising because rehabilitation has had a low priority inmedical schools and residency training programs, and many do not even offercourses on disability and rehabilitation. Similarly, personnel shortages exist inphysical therapy, speech therapy, occupational therapy, and all allied health andnursing disciplines dealing with disability. Yet the problem goes well beyondthese shortages. Even if the numbers of practitioners in these specialties weresubstantially increased, many problems would remain (e. g., there are fewincentives for practicing the types of longitudinal care this committeeadvocates, and health professionals who follow these careers historically havehad little recognition and prestige within their professional groups). In addition,longitudinal care, which has its own special appeal, is also "patient intensive"and requires complex teamwork, two factors that may outweigh its rewards in the minds of many health professionals. Steps must be taken to ease the current shortage of knowledgeable physicians, allied health professionals, and others (e. g., psychologists, sociologists, educational specialists) working in disability prevention. In fact,all specialties should have a better understanding of the process of disability and EXECUTIVE SUMMARY 28About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
appropriate modes of preventive intervention. The longitudinal care described in this report is sometimes provided by specialists in physical medicine andrehabilitation, but most typically it will be provided by general internists, familyphysicians, psychiatrists, psychologists, social workers, and others. Any long-term strategy must address the education of a broad range of these professionalsas part of a national agenda for the prevention of disability. RECOMMENDATION 23: Upgrade medical education and training of physicians Medical school curricula and pediatric, general internal medicine, geriatric, and family medicine residency training for medical professionals should include curricular material in physical medicine, rehabilitation, and mental health. In addition, such curricula should address physiatric principles andpractices appropriate to the identification of potentially disabling conditions of acute illness and injury. Appropriate interventions, including consultation and collaboration with mental health and allied health professionals, social workers, and educational specialists, and the application of effective clinical protocols should also be included. RECOMMENDATION 24: Upgrade the training of allied professionals Allied health, public health, and other professionals interested in disability issues (e. g., social workers, educational specialists) should be trained in theprinciples and practices of disability prevention, treatment planning, and rehabilitation, including psychosocial and vocational rehabilitation. Education of Persons with Disabilities and Their Families, Personal Attendants, and Advocates People with disabilities and their families, personal attendants, and advocates should be better informed about the principles of disabilityprevention. Such education would contribute significantly to the prevention ofdisability and secondary conditions —those brought about by poor self-care as well as those induced by a lack of needed social and other support services,architectural inaccessibility, unequal educational and employment opportunities, negative attitudes toward disability, changes in living environments, and greater exposure to disruptive, frustrating events. Independent living centers, which are controlled and staffed by persons with disabilities, are designed to deal with the prevention of secondaryconditions and to be a source of information on the practical aspects of dailyliving with a disability. Because these centers are usually staffed by personswith disabilities who are living independently, they offer advice based on first-hand experience of the motivation and ingenuity needed to EXECUTIVE SUMMARY 29About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
pursue an independent lifestyle. Being able to share experiences with peers who are independent brings to light those coping mechanisms that aid in preventingsecondary conditions. Independent living centers are also effective advocatesfor attitudinal and architectural changes in society that would improveaccessibility, stimulate social interaction and productivity, and facilitate anactive, quality lifestyle. RECOMMENDATION 27: Provide more training opportunities for family members and personal attendants of people with disabling conditions Persons with disabilities, their families, personal attendants, and advocates should have access to information and training relative to disability prevention with particular emphasis on the prevention of secondary conditions. Independent living centers and other community-based support groups provide a foundation for such training programs and offer a source of peer counseling. A list of the committee's recommendations for a national agenda for the prevention of disabilities follows. EXECUTIVE SUMMARY 30About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
LIST OF RECOMMENDATIONS A NATIONAL AGENDA FOR THE PREVENTION OF DISABILITY ORGANIZATION AND COORDINATIONDevelop leadership of National Disability Prevention Program at CDC Develop an enhanced role for the private sector Establish a national advisory committee Establish a federal interagency council Critically assess progress periodically SURVEILLANCE Develop a conceptual framework and standard measures of disability Develop a national disability surveillance system Revise the National Health Interview Survey Conduct a comprehensive longitudinal survey of disability Develop disability indexes RESEARCH Develop a comprehensive research program Emphasize longitudinal research Conduct research on socioeconomic and psychosocial disadvantage Expand research on preventive and therapeutic interventions Upgrade training for research on disability prevention ACCESS TO CARE AND PREVENTIVE SERVICES Provide comprehensive health services to all mothers and children Provide effective family planning and prenatal services Develop new health service delivery strategies for people with disabilities Develop new health promotion models for people with disabilities Foster local capacity building and demonstration projects Continue effective prevention programs Provide comprehensive vocational services PROFESSIONAL AND PUBLIC EDUCATION Upgrade medical education and training of physicians Upgrade the training of allied professionals Establish a program of grants for education and training Provide more public education on the prevention of disability Provide more training opportunities for family members and personal attendants of people with disabling conditions EXECUTIVE SUMMARY 31About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
1 Introduction About 35 million Americans —one person in seven —have physical or mental impairments that interfere with their daily activities (National Center for Health Statistics, 1989a). The functional limitations of more than 9 million of these people are so severe that they cannot work, attend school, or maintain ahousehold. By these two measures alone, disability ranks as the nation's largestpublic health problem, affecting not only individuals with disabling conditionsand their immediate families, but also society at large. Many medically,socially, and economically important issues call attention to the need fordeveloping an effective national disability prevention program. One is modernmedicine's progress in prolonging life, or, more accurately, averting deaths. Forexample, the odds of survival for low-birthweight babies have increasedsteadily during the past several decades. The age-adjusted rate of deaths causedby injuries has fallen precipitously, from 57. 5 deaths per 100,000 injuries in1950 to 35. 2 deaths per 100,000 injuries in 1986 (National Center for Health Statistics, 1989a). Medical victories, however, do not always translate into absolute victories. The outcome of surviving prematurity, injury, heart attack, or stroke may be disabling conditions that can result in a diminished quality of lifeand the need for continuing supportive services. Because assessments of thenation's health are based largely on mortality statistics, U. S. society rarelyreckons with the full consequences of extending lives. As the number of peoplewho survive life-threatening conditions increases, quality of life issues must begiven fuller consideration in health and social policy decisions. The need to intensify the search for effective strategies for disability prevention is heightened by the aging of the population. By the year 2020, people over age 65 will number 51. 4 million and constitute 17. 3 percent of thepopulation, as compared with 31. 7 million and 12. 7 percent in 1990. INTRODUCTION 32About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
The risk of developing cardiovascular disease, rheumatoid arthritis, and many other chronic diseases increases with age, as does the likelihood ofdisability caused by these conditions. If these chronic conditions cannot beprevented, then the focus of medical care and support services should be on theprevention of associated conditions with the purpose of increasing the numberof disability-free years in the lengthened life span. Beyond the demonstrated need for a national disability prevention program, circumstances suggest that the beginning of the 1990s is an especiallyappropriate time to develop such a program. For example, two decades ofefforts by disability-rights groups to increase public awareness paved the wayfor passage of the Americans with Disabilities Act, which bans discriminationin employment and the provision of services. This legislation affirms the goals of equal opportunity and independence for Americans with physical and mental disabilities and acknowledges the importance of their participation in the affairsof society. The act includes protection against discrimination on the basis ofdisability in public and private transportation, public accommodations,employment, telecommunications, and local and state government activities. The Americans with Disabilities Act will have several beneficial effects. For example, the expected increase in the employment of people with disablingconditions should result in their enjoying higher standards of living and fullerintegration into society; in addition, more individuals will have jobscommensurate with their skills and training and will receive employer-providedhealth benefits. Collectively, these effects should help reduce the incidence ofmany secondary conditions, including depression, that commonly result from discrimination and the social and economic barriers now encountered by people with disabling conditions. Also cause for optimism in disability prevention efforts is research progress toward understanding the biological, behavioral, and environmental(physical and social) risk factors of disability. New understanding of risk factorscan be translated into intervention strategies to prevent or mitigatedevelopmental conditions, injuries, chronic diseases, and secondary conditionsthat increase the risk of disability. Moreover, accumulating experience showsthat continuing deterioration of physical or mental health and increasing dependency need not be the outcomes of chronic diseases and functional limitations. Opportunities are increasing to reverse, interrupt, or at least slowthe progression to disability, as well as to prevent the development of secondaryconditions in people who already have a potentially disabling condition. A fewadvances in this area have been dramatic. For example, in 1990 researchersreported that administering the steroid methylprednisolone within eight hours ofthe occurrence of a spinal cord injury can significantly reduce the severity ofresulting functional limitations (Bracken et al., 1990). Thus a person who oncewould have been fully paralyzed in INTRODUCTION 33About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
the legs might now retain sufficient functioning to walk with the aid of crutches and braces. Failure to seize emerging opportunities and develop a comprehensive strategy for disability prevention is tantamount to allowing the health andquality of life of a large portion of the U. S. population to deteriorate. A growingnumber of health and social service professionals, policymakers, and membersof the public deem such an outcome unacceptable. In 1986, building on the work of Marge (1981), the National Council on Disability (NCD) identified and underscored the need for a national effort toprevent disability and recommended to the President and Congress that such aprogram be established at the Centers for Disease Control (CDC). In 1988 CDCinitiated the Disabilities Prevention Program, which is designed to buildcapacity in disability prevention at the state and local levels, establish systemsof surveillance for disabilities, use epidemiological approaches to identify risksand target interventions, and provide states with technical assistance. It is the only federal program that has been charged specifically with disability prevention. Its initial focus has been prevention of the more readily identifiableinjuries and developmental disabilities, and the secondary conditions that areoften associated with them. This report, prepared by the Institute of Medicine's Committee on a National Agenda for the Prevention of Disability at the request of the CDC andthe NCD, responds to the challenge to create a blueprint for a comprehensivenational undertaking to reduce substantially the incidence and prevalence ofdisability in the United States. The report addresses many of the public healthand social issues that intersect under the heading of disability. It describes aconceptual model of the characteristics and determinants of disability andoutlines measures for creating a national program for disability prevention. The remainder of this chapter describes briefly the definition and concept of disability used in this report, the application of public health concepts todisability prevention, and the report's scope and organization. DISABILITY: DEFINITION AND CONCEPT Although understanding of the medical, behavioral, social, and economic aspects of disability is growing, terminology continues to breed confusion, evenamong professionals in disability-related fields. For example, the failure of datacollection agencies to use consistent definitions of disability and relatedconcepts results in varied estimates of the prevalence of disability. Suchconfusion and inconsistency are common in emerging fields. Given the nascentstate of disability prevention in general and of the epidemiology of disability inparticular, confusion and inconsistency are understandable. But they poseobstacles to surveillance efforts and to efforts to elucidate the INTRODUCTION 34About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
many factors that underlie the disabling process and the occurrence of secondary conditions. They also impede the design and evaluation of preventiveinterventions. As one aspect of its work, the committee has attempted toimprove conceptual clarity and sharpen the definitions of terms. The term disability as used in this report refers to limitations in physical or mental function, caused by one or more health conditions, in carrying outsocially defined tasks and roles that individuals generally are expected to beable to do (see Appendix A, this volume). The term health condition includes pathology, or active disease, as well as impairment, which refers to losses of mental, anatomical, or physiological structure or function owing to injury, active disease, or residual losses from formerly active disease. The termdisabling condition refers to any physical or mental health condition that can cause disability. Health conditions differ in the degree to which they precipitate disability, but all physical and mental health conditions that have a measurable associationwith or likelihood of causing disability are potentially disabling conditions. A secondary condition is any additional physical or mental health condition that occurs as a result of having a primary disabling condition. Secondary conditions quite often increase the severity of an individual's disability and are also highly preventable. An illustration of these terms applied to a hypothetical case isprovided in the box below. The phrases disability prevention and prevention of disability are meant to include the prevention of potentially disabling health conditions and their progression toward disability, the prevention or reductionof disability itself, and the prevention of secondary conditions. Chapter 3 discusses these terms in greater detail in the context of a model of the disablingprocess developed by the committee. AN ILLUSTRATION OF DISABILITY TERMS Paraplegia is an example of a disabling condition. In a hypothetical scenario, a man is in an automobile crash and sustains fractured lumbar vertebrae and permanent crush-injury of the spinal cord (pathologies), which result in flaccid paralysis of the muscles of the lower limbs (paraplegia, an impairment). Consequently, he cannot walk or drive his car (functional limitations). Public transportation, sidewalks, washrooms, and work environments do not accommodate his wheelchair. As a result, he is now deprived of employment and social and cultural activities(disability). Because he is unemployed, he loses his health insurance and cannot afford to purchase an individual policy. He develops pressure sores from his wheelchair and becomes depressed (secondary conditions), which could have been prevented if he had insurance to cover appropriate educational and rehabilitative services. INTRODUCTION 35About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
In common parlance, disability is a value-laden, stereotyping term that categorizes people according to their impairments. People who have reducedability to perform expected activities —that is, those who are said to have "disabilities" —are often viewed as permanently sick. Such a perception deprives many people with disabilities of the opportunities that shouldaccompany their membership in society. The disability-rights and independent-living movements have struggled to overcome this stereotyping. We concur with their argument against the use of the phrase disabled people, preferring instead people with disabilities, and hasten to point out that a person's identity is the product of a host of characteristics and that disabling conditions are but afew of them. The message in this seemingly subtle preference for language isimportant: external factors, like stereotypes, impose obstacles to theperformance of chosen roles. In fact, it is external factors like these that cantransform a functional limitation into a disability. Thus disability is not inherent in a person, nor is it determined solely by biological factors —losses or abnormalities of psychological, physiological, or anatomical structures or functions. To view disability strictly as a biologicalphenomenon is to categorize it as a medical entity and to ignore the complexityof factors that in combination determine whether a physical or mentalimpairment will progress to a functional limitation and then to disability (theinability to perform expected social and personal roles and tasks). An accurate understanding of disability requires explicit recognition of the roles of the environment and public attitudes in determining whether functional limitationsbecome disabilities. For example, a concert pianist or a typist who loses a fingerfaces a more challenging rehabilitation than a computer programmer, school-teacher, or truck driver, whose work depends far less on having a full set ofagile fingers. Disability is not an unavoidable consequence of a chronic disease, an impairment, or even a functional limitation. The sophistication with which thehealth care system responds to an initially occurring disease, injury, or condition— in terms of medical care, assistive technology, and an array of related social support services —will affect the extent of the individual's functional limitation and the potential for progression to disability and secondary conditions. Whether disability results, and the level of severity if it does, depends on the many factors detailed in this report. These factors transcend aspects of medicalcare and extend to social determinants of the quality of life, including access tofacilities and opportunities in everyday settings and the receptiveness of thecommunity to persons with disabilities. Describing disability prevention inmedical terms poses the danger of perpetuating the misconception that disabilityis purely a medical problem, confined to the domains of primary health care. Such an orientation ignores the importance of social integration and quality oflife in influencing the disabling process. Major responsibility for disabilityprevention must rest INTRODUCTION 36About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
with society as a whole. The perceptions of the public and the willingness of society to accommodate the specific needs of people with disabilities oftendetermine whether those individuals can carry out their chosen roles in life andbe productive members of society, or whether their conditions becomedisabilities. PUBLIC HEALTH AND DISABILITY PREVENTION The public health concepts of primary, secondary, and tertiary prevention are applied to disability prevention as follows. Primary prevention seeks toavert the onset of pathologic processes by reducing susceptibility, controllingexposure to disease-causing agents, and eliminating, or at least minimizing,behaviors and environmental factors that increase the risk of disease or injurythat can cause disabling conditions. Secondary prevention is the early detectionof a potentially disabling condition, followed by the implementation of interventions that are designed to halt, reverse, or at least retard the progress of that condition. Secondary prevention becomes especially important as thepopulation ages, given that the prevalence of chronic conditions increases withage as does the risk of disability associated with these conditions. Tertiaryprevention concentrates on reducing the effects of an existing condition. Intertiary preventive strategies habilitative and rehabilitative measures, whichinclude counseling, vocational training, environmental adaptations, andmobility training, are employed to restore as much functioning as possible. Tertiary measures are also intended to prevent the occurrence of secondaryconditions, such as muscle atrophy, obesity, ulcers, and contracture —an area of major interest in this report. Disability prevention measures described in this report are designed to reduce the incidence and prevalence of potentially disabling conditions in the U. S. population. The targets of these measures are high-risk groups that,because of behavioral, environmental, biologic, economic, dietary, or otherfactors, are more likely than the rest of the population to develop a disability. Risk factors are many and varied, and their identification is a major focus ofepidemiological research, which helps to identify the often complex chain of events that can lead to disability and secondary conditions. For some disabling conditions, this chain of events begins before birth. Lack of good prenatal carebeginning early in pregnancy, for example, increases the risk of prematurity andlow birthweight, which in turn increases the risk of developmental disability,such as mental retardation. Because women who are socially disadvantaged andthose who live in rural areas have the most difficulty obtaining obstetricalservices, they are an obvious target group for preventive measures designed toincrease access to and use of prenatal care. Another example is disabilities resulting from injuries sustained in traffic INTRODUCTION 37About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
collisions. These also lend themselves to focused prevention strategies, such as seat belt laws and passive restraints, stringent drunk-driving laws andenforcement, and educational programs to encourage bicyclists to wear helmets. The obvious target population is teenagers and young adults, for whom trafficinjuries are the leading cause of mortality and morbidity. As these two examples illustrate, disabling conditions are not the products of random events. Early identification of risk factors followed by measures toeliminate or reduce them are the cornerstones of all successful preventionstrategies. In this regard, disability prevention meshes well with the publichealth model of disease prevention, as typified by vaccination programs thatimmunize at-risk populations against certain infectious agents. Obviously,greater emphasis on efforts to identify risk factors across a broad range of areas and subsequently to develop intervention measures to reduce the occurrence of diseases, injuries, and other potentially disabling conditions must be afundamental part of a national agenda for disability prevention. Clearly, thereare hundreds of important health conditions that pose the risk of disability andthat are, in some measure, preventable. Many of these conditions, their riskfactors, and means of primary prevention have been previously addressed. 1 Primary prevention strategies are also discussed in this report, but additionalemphasis is placed on the needs of people who already have potentiallydisabling conditions, that is, secondary and tertiary prevention —a relatively unattended area of prevention. A Life Course Perspective One of the major goals of disability prevention is to maximize an individual's functioning, well-being, and quality of life throughout the lifecourse. This goal incorporates the strategies of health promotion, diseaseprevention, and chronic illness management to prevent disability. Within a lifecourse framework for disability prevention, the three strategies —health promotion, disease prevention, and chronic illness management —are complementary. Health 1 Many study groups have reviewed current knowledge on risk factors and preventive activities as they relate to specific conditions, such as heart disease, cancer, stroke, and injuries. Examples are Diet and Health: Implications for Reducing Chronic Disease Risk (National Research Council [NRC], 1989), Diet, Nutrition and Cancer (NRC, 1982), Injury in America (NRC, 1985), The Surgeon General's Report on Nutrition and Health (U. S. Department of Health and Human Services [HHS], 1989c), Surgeon General's Workshop: Health Promotion and Aging (U. S. HHS, 1988b), Healthy People: The Surgeon General's Report on Health Promotion and Disease Prevention (U. S. Department of Health, Education, and Welfare, 1979), Closing the Gap: The Burden of Unnecessary Illness (Amler and Dull, 1984), Guide to Clinical Preventive Services (U. S. HHS, 1989a), Unnatural Causes: The Three Leading Killer Diseases in America (Maulitz, 1989), and Healthy People 2000: National Health Promotion and Disease Prevention Objectives (U. S. HHS, 1990). INTRODUCTION 38About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
promotion helps people develop lifestyles to maintain and enhance their well-being through both community and individual measures. Disease preventionprotects people from the consequences of a threat to health, such as a disease orenvironmental hazard (U. S. Department of Health, Education, and Welfare,1979). Chronic illness management includes not only medical care andrehabilitation but also psychological, social, occupational, and environmental interventions to minimize or control potential disability. After the onset of a potentially disabling condition, the focus of disability prevention becomes oneof retarding the progression toward disability and preventing the developmentof secondary conditions. Recognizing the interactive nature of the process that can lead to disability, a life course perspective on disability prevention should address not only thefactors that are directly related to health but also the other influences thatdetermine quality of life, because good health, as well as poor health, is theresult of interactions among biological, behavioral, and environmental (social and physical) factors. It is clear, for example, that inadequate housing, lack of education, and other problems that are the traditional concerns of social serviceagencies are also powerful influences on success or failure in preventingdisability. Thus a comprehensive approach to the design and delivery of healthand social services throughout the life course is an integral element of disabilityprevention. SCOPE AND ORGANIZATION OF THE REPORT In the 1985 publication Injury in America, the National Research Council and the Institute of Medicine identified death and disability caused by injury asone of the most important public health issues in the United States (National Research Council, 1985). This report expands on that effort by addressing abroader range of preventable disabling conditions and by consideringapproaches to ensure that people with disabling conditions have the opportunity to participate fully in society. Injury prevention is perhaps the most developed area within the entire province of disability prevention. Yet the scope of effort in this area —in terms of surveillance and data collection, research, and the development andevaluation of interventions —is limited when compared with the magnitude of the need. In other areas of disability prevention, the disparity is even greater. Consequently, the scientific foundation on which prevention efforts must build is small. This is not to say that disability prevention efforts undertaken in theseareas are not worthwhile. To the contrary, there is a great need for research andevaluation in disability prevention, and this report proposes an agenda for theseactivities. However, time and resources did not permit the committee to reviewcurrent understanding in all areas of disability. One notable omission is mentalhealth. In a recent analysis of INTRODUCTION 39About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
67 chronic health conditions or groups of health conditions, mental health conditions ranked as the ninth leading cause of activity limitation (La Plante,1989a). Moreover, depression and other mental health conditions are criticallyimportant determinants of the progression to physical disability, a point notedthroughout this report. Given their importance, mental health conditions thatlead to disability or that are involved in physical disability merit more in-depth study than was possible here. In this report, the committee addresses the topic of disability prevention from general and specific perspectives, focusing most of their attention on theprevention needs of people with disabling conditions, that is, secondary andtertiary prevention. Chapter 2 describes the magnitude and dimensions of disability in the United States. Chapter 3 describes the committee's conceptual approach to disability, assesses the adequacy of existing data collection and surveillance systems for addressing this important public health issue, anddescribes how the tools and principles of epidemiology can be used to studyhealth-related limitations in human activity and to develop preventiveinterventions. In the four succeeding chapters, the committee concentrates on four major areas of disability: developmental disabilities ( Chapter 4 ); injury-related disabilities, specifically those related to spinal cord injury and traumatic braininjury ( Chapter 5 ); disabilities associated with chronic diseases and aging (Chapter 6 ); and secondary conditions associated with primary disabling conditions ( Chapter 7 ). In each of these chapters, the public health significance of each is assessed, current medical and social approaches to prevention arediscussed, and research needs are identified. Chapter 8 reviews government and private-sector programs concerned with disability prevention and describes and assesses the overall effectiveness ofexisting service programs and their guiding policies. Obstacles to andopportunities for achieving a more integrated and effective program arediscussed. In the first eight chapters of the report, committee ''findings" — statements thought to be of particular importance —are printed in bold type and indented. The concluding chapter ( Chapter 9 ) presents the committee's overarching conclusions and recommendations. Together, they constitute a framework forassembling a national agenda for the prevention of disability. Therecommendations are organized into five groups: organization and coordination of a national program for the prevention of disability, surveillance, research, access to care and preventive services, and professional and public education. Finally, there are 3 appendixes in the report. Appendix A is a paper that was written for this committee by Saad Nagi. It describes disability conceptsand offers an assessment of existing frameworks. Appendix B contains a dissenting statement from one committee member, Deborah Stone, and a response to her dissent by the other 22 members of the committee. Appendix C contains brief biographical sketches of the committee members. INTRODUCTION 40About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
2 Magnitude and Dimensions of Disability in the United States Disability is a serious public health and social issue in the United States. About 35 million Americans experience activity limitations owing to chronic health problems or impairments, and many of them are deprived economically and socially because of these limitations. They incur high health care costs andhave special problems in accessing health care. Despite the apparent magnitudeof the problem, however, few comprehensive assessments of the prevalence andnature of disability in the United States are available (Rice and La Plante, 1988a). Data on disability come from a wide variety of data systems, each of which collects data for its own purposes, requiring different standards and definitions. These different purposes provide for a rich diversity of information on disabilityin the United States, but the resulting differences in definitions and statisticalpractices make it difficult to assess the full public health and social impacts ofdisability in a comprehensive way (National Research Council, 1990). This chapter reviews data from several of these systems. Comparing and synthesizing those data, it presents an analysis of the dimensions of disability in the United States, now and in the past, and describes the prevalence of disabilityand its associated chronic health conditions in the population. The focus is onthe broad dimensions of disability rather than on special problems orpopulations. Similarly, this analysis focuses on the prevalence of disablingconditions, not on the causes of these limitations. This is followed by a briefdiscussion of the economic costs of disability. DATA SOURCES Students of disability-related issues continue to debate the best statistical system for assessing and analyzing the dimensions of disability (National MAGNITUDE AND DIMENSIONS OF DISABILITY IN THE UNITED STATES 41About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
Research Council, 1990). As defined and described throughout this report, much of "disability" is a social issue, going beyond biological or functionallimitations and relating to people's ability to perform their expected social roles. This chapter, however, attempts to avoid the debate about how disability shouldbe defined and measured, and simply reports on the data that are available. The National Health Interview Survey (NHIS) is a population survey that has been conducted continuously by the National Center for Health Statisticsfor almost 30 years (National Center for Health Statistics, 1989a). The NHISdata, particularly the data on "activity limitation," provide a reasonablyconsistent national picture over a long period of time, and hence are used as theframework of the synthesis in this chapter. These data are supplemented, whereappropriate, by data from other surveys described below. The National Health Interview Survey (NHIS) The NHIS is designed to collect representative data on the civilian noninstitutionalized population living in the United States. Among thoseexcluded from the scope of the NHIS are residents of nursing homes, membersof the armed forces, prisoners, and U. S. citizens living abroad. In 1988, thesurvey reached a sample of 122,310 persons in 47,485 households. The use ofhouseholds to locate survey respondents means that the NHIS tends to underrepresent that portion of the population, the homeless, for example, that do not live in households. To the extent possible, adults are interviewed directly. Proxy respondents provide information for all children in the household and forthose adults who cannot be interviewed in person (National Center for Health Statistics, 1989a). The NHIS data on activity limitation are obtained through questions that establish whether an "impairment or health problem" prevents or limitsactivities and whether that impairment or health problem is chronic. Respondents are further classified according to the degree of activity limitation:(1) limited, but not in "major activity" (the least severely limited category); (2)limited in amount or kind of "major activity"; or (3) unable to carry out "majoractivity'' (the most severely limited category). "Major activity" is defined as the predominant social role expected of a person of a given age. According to the current definition, the major activities are "playing" for children under age 5,"attending school" for children ages 5-17, "working or keeping house" foradults ages 18-69, and "living independently" for adults age 70 and over. Asdiscussed below in the section on trends, however, these definitions havechanged over time (National Center for Health Statistics, 1989a). A chronic condition is one that has existed for at least three months or MAGNITUDE AND DIMENSIONS OF DISABILITY IN THE UNITED STATES 42About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
one such as arthritis or heart disease that would normally continue for at least three months. Respondents who have more than one limiting condition areasked to identify one of them as the main cause of their limitation. Identificationof these causes depends on the respondents' understanding of their conditions,their perceptions of how limiting they are, and their willingness to report them. In a separate set of questions, the NHIS also collects data on the overall prevalence of specific chronic conditions, without regard to whether the condition causes any activity limitation (National Center for Health Statistics,1989a). This distinction between presence of a condition and limitation causedby a condition is consistent with the distinction that has been made betweenimpairments or functional limitations and disability (Nagi, 1965; World Health Organization, 1980; Haber, 1990). The ICD Survey of Disabled Americans In late 1985, Louis Harris and Associates conducted a telephone survey for the International Center for the Disabled (ICD) and the National Council on the Handicapped to assess the attitudes and experiences of people with disabilities. The survey was designed to reach a representative sample of the population age16 and over with disabilities, living in households with telephones in all statesexcept Alaska and Hawaii. Individuals were included if they met any one of three criteria: (1) having a health condition that prevented full participation in work, school, or other activities; (2) having a physical disability, a seeing,hearing, or speaking impairment, an emotional or mental disability, or alearning disorder; or (3) reporting that one considered oneself disabled or thatothers would consider one disabled. In addition to questions on the nature andseverity of their disability, the survey asked respondents about the impact ofdisability on their social and working lives, barriers to entering the mainstream,disability benefits, and other matters. The survey's methodology permitted anestimate of the prevalence of disability in the United States (Louis Harris and Associates, 1986). Survey of Income and Program Participation (SIPP) Conducted by the Census Bureau since 1983, the SIPP is an ongoing panel study of the economic well-being of U. S. households. In 1984, during the thirdround of interviews with its first panel, SIPP collected data on the extent ofdisability in the civilian noninstitutionalized population. These data includeinformation on: (1) functional limitations; (2) work limitations; and (3) receipt of Social Security or veterans disability benefits (U. S. Department of Health and Human Services, 1989d). MAGNITUDE AND DIMENSIONS OF DISABILITY IN THE UNITED STATES 43About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
For adults, the degree of functional limitation was based on ability to perform activities of daily living (ADLs),1 three of the standard instrumental activities of daily living (IADLs)2 (Katz, 1983), and six other sensory and physical functions. Individuals needing assistance with ADLs were the mostseverely limited, followed by those needing assistance with IADLs. A broadercategory of limitation —a "substantial" limitation —included all of those needing assistance with ADLs or IADLs plus people who were unable to perform one or more of the sensory or physical functions, or who had difficulty with two ormore of those functions. For children, functional limitation was based on thepresence of either a physical condition that limits the ability to walk, run, orplay, or a mental or emotional condition that limits the ability to learn or doschool work. These limitations in children were considered equivalent to"substantial" limitations in adults. Questions on work limitations were asked ofpersons ages 16-72. Unlike the NHIS, limitations due to acute conditions werenot excluded. The data on receipt of disability benefits cover thenoninstitutional resident population ages 18-64. National Long-Term Care Surveys (NLTCS) In 1982 and again in 1984, the Health Care Financing Administration conducted surveys of the Medicare-eligible population aged 65 and over toassess the characteristics of persons with chronic disabilities. Both surveysdefined disability as a current or expected limitation of 90 days or more in theability to perform one or more ADLs or IADLs. For the 1982 survey, interviews were conducted only with people living in the community; residents of nursing homes were excluded (Manton, 1989; Macken, 1986). The 1984 surveyreinterviewed survivors from the first study, including those who had movedinto nursing homes, and conducted first-time interviews with new respondents(Manton, 1989). Supplement on Aging (SOA) and Longitudinal Study of Aging (LSOA) Each year the NHIS supplements its core questionnaire with additional questions on special topics. In 1984 the special topic portion of the NHIS, the Supplement on Aging (SOA), addressed the health status and livingarrangements of people aged 55 and older. The SOA collected detailed data onsubjects that included the respondents' ability to perform ADLs and 1 Dressing, undressing, eating, personal hygiene, getting in/out of bed, and getting around inside the house. 2 Preparing own meals, doing light housework, and getting around outside the house. MAGNITUDE AND DIMENSIONS OF DISABILITY IN THE UNITED STATES 44About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
IADLs, the presence of specific health impairments, and the respondents' work histories and disability benefits. The SOA also served as the baseline of alongitudinal study, the Longitudinal Study of Aging (LSOA), intended to studythe impact of changes in functional status and living arrangements oninstitutionalization. The LSOA used three forms of follow-up: the National Death Index was used to locate those SOA respondents who died; Medicare files were used to determine hospital use and costs for respondents who were 65 or older at the time of the SOA interview; and surviving respondents who were70 or older at the time of the SOA were reinterviewed in 1986 and 1988(National Center for Health Statistics, 1987b). PREVALENCE OF DISABILITY Based on the 1988 NHIS, 33. 1 million people, or 13. 7 percent of the civilian noninstitutionalized population, have some degree of "activitylimitation" due to chronic conditions. When one takes into account theestimated 2. 2 million people with disabilities who live in institutional facilitiessuch as nursing homes or residential facilities for the mentally retarded or mentally ill (U. S. Department of Health and Human Services, 1989d), the total number of Americans with disabilities is about 35 million. To describe thecomposition of this population, we begin with data on activity limitation fromthe NHIS and then use data from other sources to provide different perspectives. NHIS Activity Limitation Data The 33. 1 million noninstitutionalized people with activity limitations fall into three groups of roughly equal size. Some 10. 3 million (4. 3 percent of thepopulation) experience limitations that do not interfere with their major lifeactivities. Another 13. 1 million (5. 4 percent of the population) are limited inamount or kind of major activities that they can carry out. The remaining 9. 7 million (4. 0 percent of the population) are unable to carry on the major activity for someone their age (National Center for Health Statistics, 1989a). The combined prevalence of all three levels of activity limitation increases substantially with age, as shown in Figure 2-1. In 1988, the prevalence of any activity limitation increased from 2. 2 percent of children under age 5 to 37. 6percent of adults age 70 or older. The severity of limitation also increases with age, as Figure 2-1 shows. Among people with activity limitations, an increasing proportion in each agegroup up to age 70 is unable to carry out their major activities (the most severely affected group). After age 70, however, the proportion unable to carry on their major activities decreases, corresponding to the shift in the MAGNITUDE AND DIMENSIONS OF DISABILITY IN THE UNITED STATES 45About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
definition of major activity from work to activities of daily living. Another factor in this pattern is that older people are more likely to reside in nursinghomes and similar institutional facilities. Because nursing home residents tendto have more severe activity limitations, adding in the institutionalizedpopulation would amplify the trend toward increasing severity of disability withage. FIGURE 2-1 Prevalence of activity limitation due to chronic conditions by degree of limitation and age, 1988. Source: National Center for Health Statistics, 1989a. Adjusting for the differences in their age distribution, women have slightly lower prevalence rates of activity limitation than men: 12. 9 percent vs. 13. 2percent, respectively (National Center for Health Statistics, 1990a). Becausewomen outnumber men in the population and because they have an older agedistribution, however, women account for more than 53 percent of the peoplewith activity limitations. Above age 70, women make up 62 percent of thepopulation with activity limitations (National Center for Health Statistics,1989a). Blacks experience a higher prevalence of activity limitation than whites — 16. 3 percent for blacks vs. 12. 8 percent for whites —when differences in age distributions are taken into account. Furthermore, blacks are likely toexperience a greater degree of activity limitation: the proportion unable to carryout their major activities is substantially higher for blacks (6. 6 percent) than forwhites (3. 5 percent) (National Center for Health Statistics, 1990a). MAGNITUDE AND DIMENSIONS OF DISABILITY IN THE UNITED STATES 46About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
FIGURE 2-2 Prevalence of activity limitation due to chronic conditions, by degree of limitation and family income, 1988. Source: National Center for Health Statistics, 1990a. Activity limitation is substantially more prevalent among people with lower family incomes, as Figure 2-2 shows. The prevalence of activity limitation decreases from 23. 2 percent for people with incomes below $13,000to 8. 1 percent for people with annual family incomes above $45,000. Thedifferential is larger for the most severe activity limitations: the proportion ofpeople unable to carry out their major activities decreases from 9. 1 percent inthe lowest income group to 1. 4 percent in the highest income group. Becausethe institutionalized population tends to have low incomes, adding this group to the NHIS sample would further amplify this differential (National Center for Health Statistics, 1990a). It should be pointed out that the cause of these differentials is not clear. To some extent, people with lower socioeconomic status probably experience moredisability just as they experience more injuries, higher mortality rates, lessaccess to health care, and generally poorer health. On the other hand, somepeople have lower incomes because their disabling conditions restrict theirability to work. Cross-sectional survey data cannot provide any insight into therelative importance of these two very different explanations for the relationship between income and activity limitation. MAGNITUDE AND DIMENSIONS OF DISABILITY IN THE UNITED STATES 47About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
In general, people with activity limitations are substantially older and poorer than those without limitations. With regard to age, 32 percent of peoplewith activity limitation are over 65, compared with 9 percent of people withoutlimitations. Only 10 percent of the population with activity limitations are under18, compared with 29 percent of people without limitation. Furthermore, 22percent of the population with activity limitations —compared with 10 percent of people without limitation —have incomes under $10,000, and 18 percent — compared with 33 percent —have incomes over $35,000. Other Perspectives The NHIS data (National Center for Health Statistics, 1989a) also provide perspectives on aspects of disability beyond activity limitation. For instance,respondents were restricted in activity for an average of 14. 7 days in 1988because of acute and chronic conditions, including an average of 6. 3 bed-disability days. Furthermore, 39. 1 percent of the respondents rated their ownhealth as "excellent," 27. 8 percent as "very good," and 23. 2 percent as "good. "Only 9. 9 percent rated their health as "fair" or ''poor. " This is smaller than the proportion —13. 7 percent —that experience any activity limitation. As with activity limitation, the proportion of people who rate their health as fair or poorincreases with age, decreases with income, and is higher for blacks than forwhites. As discussed below, a variety of other surveys and data systems generate estimates of the prevalence of disability. Tables 2-1, 2-2, and 2-3 present some of the measures available from the NHIS and other sources. The targetpopulation is usually the civilian noninstitutionalized population, but each studyuses different criteria for identifying "disability. " Without exception, however,people with disabilities tend to be older, to have less education, and to be poorerthan the general population. The ICD survey led to an estimate that about 27 million people, 15 percent of the population age 16 and over, had some disability. Broken down by age in Table 2-1, the prevalence rates are similar to those from the NHIS for the population under age 65. For people 65 and over, however, the NHIS rate isabout a third higher. Even though the ICD criteria for disability could beexpected to include more people than the NHIS, use of only telephoneinterviews may have tended to exclude older people with disabilities. Among those included in the ICD survey, 8 percent reported that they experienced no limitation in their activities, and 50 percent did not considerthemselves disabled even though they met at least one of the survey's"disability" criteria. However, 46 percent said that they were preventedcompletely from working, going to school, or keeping house. Two-thirds of thepeople under age 65 were not working, and two-thirds of the people who were not working reported wanting to work. MAGNITUDE AND DIMENSIONS OF DISABILITY IN THE UNITED STATES 48About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
TABLE 2-1 Alternative Estimates of Functional and Activity Limitation by Age: United States Survey Under 18 18-44 45-64 65 and Over Numbers (in thousands) Activity limitation National Health Interview Survey (1985)3,221 8,391 10,405 10,709 ICD-Louis Harris (1985) — 8,800a10,200 8,000 Functional limitation Survey of Income and Program Participation (1984)2,326 11,139b10,541c15,466 Percent of population group Activity limitation National Health Interview Survey (1985)5. 1 8. 4 23. 4 39. 6 ICD-Louis Harris (1985) — 8. 2a22. 7 28. 0 Functional limitation Survey of Income and Program Participation (1984)3. 7 10. 1b31. 9c58. 7 Notes: Definition of disability differs for each survey. National Health Interview Survey : Unable to carry out major activity; limited in amount or kind of major activity; or limited, but not in major activity. International Center for the Disabled —Louis Harris Survey : Prevented from full participation in work, school, or other activities; having a physical disability, seeing, hearing, orspeaking impairment, an emotional or mental disability, or a learning disorder; or consideringoneself disabled or considered disabled by others. Survey of Income and Program Participation : For adults, needs assistance with ADLs or IADLS; inability or difficulty in at least one function. Forchildren, having a physical condition that limits the ability to walk, run, or play, or a mental oremotional condition that limits the ability to learn or do school work. a Ages 16-44. b Ages 18-49. c Ages 50-64. SOURCES: National Center for Health Statistics, 1986; Louis Harris and Associates, Inc., 1986; calculated from Rice and La Plante, 1988a; U. S. Department of Health and Human Services, 1989d. The relationships among a number of different measures of disability are illustrated in Figure 2-3, from the 1984 SIPP. Each box represents a segment of the population (in thousands) meeting a particular combination of conditions. For example, in the bottom right corner 956,000 people are age 65 to 72 andhave a work limitation but report no limitations in functioning. MAGNITUDE AND DIMENSIONS OF DISABILITY IN THE UNITED STATES 49About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
TABLE 2-2 Alternative Estimates of Work Limitation Among Persons Ages 18 to 64: United States Survey Any Work Limit Unable to Work Numbers (in thousands) National Health Interview Survey (1983-85) 14,347 7,785Survey of Income and Program Participation (1984)17,950 8,025 Current Population Survey (1985)a13,336 6,893 Disability benefit recipients (1984) 4,400 — Percent of population group National Health Interview Survey (1983-85) 10. 1 5. 5Survey of Income and Program Participation (1984)12. 5 5. 6 Current Population Survey (1985)a8. 8 4. 5 Disability benefit recipients (1984) 3. 1 — Notes: Disability Benefit Recipients : Social Security Disability Insurance, Supplemental Security Income, or Veterans Administration benefits. a Ages 16-64. SOURCES: La Plante, 1988; U. S. Department of Health and Human Services, 1989d; calculated from Haber, 1990, and U. S. Bureau of the Census, 1988. On the basis of functional limitations, the SIPP estimated that 39. 5 million people, 17 percent of the noninstitutionalized population, had some degree ofdisability. (In Figure 2-3, this number is the sum of all numbers in boxes labeled "limitations in functioning," i. e., 2,326 + 9,677 + 8,422 + 3,443 + 118 + 11,310+ 4,157). Another example is work limitations, where the number of persons inthe population ages 18-64 with any work limitation totals 17. 95 million people(i. e., 8,442 + 3,443 + 549 + 5,515). Table 2-1 shows that the SIPP produced a lower estimate of disability among children than the NHIS. Some of the difference may be due to differenttypes of questions. The SIPP asks a general question on whether any childrenhave limitations, and only with a positive response does it go on to ask whichchildren, up to a total of three. The NHIS includes an individualized inquiry onthe presence of activity limitation for each child in the household. For youngeradults, the two surveys produce comparable results. At older ages, however, the SIPP shows much higher rates of disability than the NHIS. For people 65 andover, the SIPP rate is half again as high as the NHIS rate. The more extensivequestions in the SIPP on the ability to perform specific functions may provide agreater opportunity for respondents to identify limitations. MAGNITUDE AND DIMENSIONS OF DISABILITY IN THE UNITED STATES 50About this PDF file: This new digital representation of the original work has been recomposed from XML files created from the o riginal paper book, not from the original typesetting files. Page breaks are true to the original; line lengths, word breaks, heading styles, and other typesett ing-specific formatting, however, cannot be retained, and some typographic errors may have been accidentally inserted. Please use the print version of this publication as the authoritative version for attribution. Disability in America : Toward a National Agenda for Prevention, National Academies Press, 1991. Pro Quest Ebook Central, Copyright © 1991. National Academies Press. All rights reserved. | Disability in America Toward a National Agenda for Prevention etc. Z-Library.pdf |
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