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--> ENABLING AMERICA Assessing the Role of Rehabilitation Science and Engineering Edward N. Brandt, Jr., and Andrew M. Pope, Editors Committee on Assessing Rehabilitation Science and Engineering Division of Health Sciences Policy INSTITUTE OF MEDICINE NATIONAL ACADEMY PRESS Washington, D.C. 1997
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--> National Academy Press 2101 Constitution Avenue, N.W. Washington, D.C. 20418 NOTICE: The project that is the subject of this report was approved by the Governing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine. The members of the committee responsible for the report were chosen for their special competences and with regard for appropriate balance. This report has been reviewed by a group other than the authors according to procedures approved by a Report Review Committee consisting of members of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine. The Institute of Medicine was chartered in 1970 by the National Academy of Sciences to enlist distinguished members of the appropriate professions in the examination of policy matters pertaining to the health of the public. In this, the Institute acts under both the Academy's 1863 congressional charter responsibility to be an adviser to the federal government and its own initiative in identifying issues of medical care, research, and education. Dr. Kenneth I. Shine is president of the Institute of Medicine. Support for this project was provided by funds from the U.S. Department of Health and Human Services (Contract No. 282-95-0035). Additional funding to support the publication and dissemination of the report was provided by the J. W. Kieckhefer Foundation, the American Physical Therapy Association, and the U.S. Department of Veterans Affairs, the Centers for Disease Control and Prevention, and the National Institutes of Health. The opinions expressed in this publication are those of the Committee on Assessing Rehabilitation Science and Engineering and do not necessarily reflect the views of the sponsors. Library of Congress Cataloging-in-Publication Data Enabling America : assessing the role of rehabilitation science and engineering / Edward N. Brandt, Jr., and Andrew M. Pope, editors; Committee on Assessing Rehabilitation Science and Engineering, Division of Health Sciences Policy, Institute of Medicine. p. cm. Includes bibliographical references (p. ) and index. ISBN 0-309-06374-4 (cloth) 1. Rehabilitation technology—United States. 2. Medical rehabilitation—United States. I. Brandt, Edward N. (Edward Newman), 1933- . II. Pope, Andrew MacPherson, 1950- . III. Institute of Medicine (U.S.). Committee on Assessing Rehabilitation Science and Engineering. RM950.E53 1997 362.1′786′0973—dc21 97-21183 Additional copies of this report are available from the National Academy Press, 2101 Constitution Avenue, N.W., Lock Box 285, Washington, D.C. 20055. Call (800) 624-6242 or (202) 334-3313 (in the Washington Metropolitan Area). Internet http://www.nap.edu. For more information about the Institute of Medicine, visit the IOM home page at http://www2.nas.edu/iom. Copyright 1997 by the National Academy of Sciences. All rights reserved. Printed in the United States of America Cover art: Will Mason, National Academy Press The serpent has been a symbol of long life, healing, and knowledge among almost all cultures and religions since the beginning of recorded history. The image adopted as a logotype by the Institute of Medicine is based on a relief carving from ancient Greece, now held by the Staatliche Museen in Berlin.
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--> COMMITTEE ON ASSESSING REHABILITATION SCIENCE AND ENGINEERING EDWARD N. BRANDT, JR. (Chair), Regents Professor and Director, Center for Health Policy, College of Public Health, University of Oklahoma Health Sciences Center, Oklahoma City SHARON BARNARTT, Professor and Chair, Department of Sociology, Gallaudet University CAROLYN BAUM, Assistant Professor of Occupational Therapy and Neurology and Director, Department of Occupational Therapy, Washington University School of Medicine FAYE BELGRAVE, Associate Professor of Psychology, Director of Applied Social Program, Department of Psychology, George Washington University CLIFFORD BRUBAKER, Professor and Dean, School of Health and Rehabilitation Sciences, University of Pittsburgh DIANA CARDENAS, Professor, University of Washington School of Medicine, Department of Rehabilitation Medicine, University of Washington Medical Center, Seattle DUDLEY S. CHILDRESS, Professor of Biomedical Engineering and Orthopedic Surgery and Director, Prosthetics Research Laboratory and Rehabilitation Engineering Research Program, Northwestern University DONALD L. CUSTIS, Director (Retired) for Medical Affairs and Associate Executive Director for Health Policy, Paralyzed Veterans of America, Potomac, Md. SUE K. DONALDSON, Professor of Physiology, School of Medicine, and Professor and Dean, School of Nursing, Johns Hopkins University DAVID GRAY, Professor of Health Sciences Program in Occupational Therapy, Washington University School of Medicine DAVID E. KREBS, Professor and Interim Director, Graduate Program in Clinical Investigation, Massachusetts General Hospital Institute of Health Professions, and Director, Massachusetts General Hospital Biomotion Laboratory, Boston ELLEN J. MACKENZIE, Professor, Department of Health Policy and Management; Senior Associate Dean for Academic Affairs; and Director, Center for Injury Research and Policy, Johns Hopkins University School of Hygiene and Public Health MARGARET TURK, Associate Professor, Department of Physical Medicine and Rehabilitation and Pediatrics, State University of New York Health Sciences Center at Syracuse
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--> GLEN WHITE, Assistant Professor, Department of Human Development and Family Life, University of Kansas, Lawrence SAVIO L.-Y. WOO, Ferguson Professor and Vice Chairman for Research, Department of Orthopaedic Surgery, School of Medicine, University of Pittsburgh EDWARD YELIN, Professor of Medicine and Health Policy, University of California, San Francisco WISE YOUNG, Professor, Department of Neurosurgery, New York University Medical Center, New York City IOM Health Sciences Policy Board Member/Committee Liaison RICHARD JOHNS, Distinguished Service Professor of Biomedical Engineering and Professor of Medicine, Johns Hopkins University School of Medicine Study Staff ANDREW M. POPE, Study Director GEOFFREY S. FRENCH, Research Assistant THELMA M. COX, Project Assistant Division Staff VALERIE PETIT SETLOW, Director, Division of Health Sciences Policy JAMAINE TINKER, Financial Associate LINDA DePUGH, Administrative Assistant
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--> Preface In my career as an academician, political appointee (Assistant Secretary for Health, 1981-1984), and health policy maker, I have rarely, if ever, been involved in an activity of such magnitude as the one that resulted in this report. The range of issues was broad, deep, and complex, spanning from subcellular biochemistry and genetics to human behavior, health, and public policy. Moreover, the recommendations that emanated from our assessment of the research (and the programs that support it) have the potential to directly affect the health, productivity, and quality of life of millions of Americans. The assessment of rehabilitation science and engineering that was conducted by the committee required different methods of data collection and analysis. Partly as a consequence of the breadth, depth, and complexity of our task, but also out of a desire to be as comprehensive as possible, the committee cast a broad net for the collection of information. Data on current federal research projects were important, of course, but so were informed opinions regarding needs, priorities, and the relative effectiveness of federal research programs. Thus, the committee polled consumers through various means, held focus groups with professional associations, interviewed federal agency officials (past and present), and reviewed current federal research activities. Collecting, organizing, and processing this information was a formidable task in itself, and the Institute of Medicine staff is to be commended for their efforts in supporting the committee's work in this regard. The committee is also indebted to numerous other individuals and organizations who generously provided us with infor-
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--> mation and assistance during our deliberations. Appendix A of this report contains the names of those who wrote background papers, participated in our meetings, made presentations, or otherwise assisted us in our work. Special recognition for the fundamental roles that they played in the initiation of this activity should be given to Senator Robert Dole, R. Alexander Vachon, Philip Lee, Suzanne Stoiber, and Lynn Gerber. As the committee began to draw conclusions, there was a general sense of agreement on the shortcomings in the organization and administration of federal research programs in disability and rehabilitation-related research. In summary, these were as follows: a need for improved coordination, a need for more research, and a need for enhanced visibility of rehabilitation-related research within the federal research programs. Although I suspect that few will argue with the needs that are identified and described in this report, I am sure that some will disagree with the proposed solutions. In developing these solutions, the committee's calls for more research and improved coordination were not made reflexively or out of mere self-interest, but rather resulted from rather extensive debate and deliberation. Coming to agreement on the recommendation for changes in the organization and administration of the major programs was perhaps the most difficult challenge. Developing a solution that would help ensure both scientific rigor in research and responsiveness to consumers was the priority, but political sensitivities could not be ignored. There was general consensus that the federal government needed a strong coordinating body, but the size, powers, and location of that body were all open to debate. In this regard, as the largest and most visible of federal programs supporting rehabilitation-related research, the National Institute on Disability and Rehabilitation Research (NIDRR) program received much attention, and it is not without careful consideration that the committee makes its recommendation to move the NIDRR program from the U.S. Department of Education to the U.S. Department of Health and Human Services. The committee considered and discussed many options in great depth; disability and rehabilitation, after all, are education issues to many people, but they are also labor issues and health issues. In the end it was decided that placement at a higher administrative level within an agency that could nurture its growth, help ensure its scientific development, and facilitate its interaction with other related programs that proved to be the winning argument. In any event, it seems clear that although current efforts are generally of high quality, they are nonetheless inadequate in the face of the needs of the millions of Americans with potentially disabling conditions and the annual costs that range in the neighborhood of $300 billion annually, to say nothing of the emotional costs and the associated issues of quality of
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--> life. What is needed is an expanded and improved federal effort that will enhance the visibility of disability and rehabilitation science, expand research, and do both in a more coordinated fashion. Finally, the committee feels strongly about the importance of enhancing the federal effort in rehabilitation science and engineering, and about the recommendations that are made in this report for accomplishing this objective. Implementing our recommendations for improving coordination, expanding research, and enhancing visibility will not only improve the health and quality of life of millions of Americans, it is quite simply the right thing to do. Such an enhanced effort will help ensure that the best science is brought to bear on these issues in a well-coordinated and efficient manner, with the ultimate result of Enabling America. Edward N. Brandt, Jr., Chair Committee on Assessing Rehabilitation Science and Engineering
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--> Acronyms AAP Association of Academic Physiatrists AAPM&R American Academy of Physical Medicine and Rehabilitation ACRM American Congress of Rehabilitation Medicine ADA Americans with Disabilities Act of 1990 ADL activities of daily living ADRR Agency on Disability and Rehabilitation Research AHCPR Agency for Health Care Policy and Research AOA Administration on Aging AOTA American Occupational Therapy Association APTA American Physical Therapy Association ASHA American Speech-Language-Hearing Association ASPE Assistant Secretary for Planning and Evaluation CAPTE Commission on Accreditation in Physical Therapy Education CATN Consumer Assistive Technology Transfer Network CbD cerebellar disorders CCOP Community Clinical Oncology Program CDC Centers for Disease Control and Prevention CG Center of Gravity CHAMPUS Civilian Health and Medical Program of the Uniformed Services CHQ Child Health Questionnaire CMA Community Medical Alliance
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--> CP Center of Pressure CPRD Committee on Prosthetics Research and Development CRISP Computer Retrieval of Information on Scientific Projects CRRN Certified Rehabilitation Registered Nurse DDP Disabilities Prevention Program DHHS U.S. Department of Health and Human Services DOD U.S. Department of Defense DOE U.S. Department of Energy EIS Epidemiology Intelligence Service FIM Functional Independence Measure FSQ Functional Status Questionnaire GDP Gross Domestic Product HMO health maintenance organization HRQL health-related quality of life HSR&D health services research and development HUD U.S. Department of Housing and Urban Development IADL instrumental activities of daily living ICD institutes, centers, and divisions, National Institutes of Health ICDR Interagency Committee on Disability Research IOM Institute of Medicine, National Academy of Sciences I-QOL quality-of-life measure specific to urinary incontinence MCO managed care organization MIP managed indemnity plan MRCC Medical Rehabilitation Coordinating Committee, National Institutes of Health MRS Medical Research Service NARIC National Rehabilitation Information Center NCEH National Center for Environmental Health NCI National Cancer Institute NCIPC National Center for Injury Prevention and Control NCMRR National Center for Medical Rehabilitation Research NHIS National Health Interview Survey NHP Neighborhood Health Plan NICHD National Institute of Child Health and Human Development
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--> NIDRR National Institute on Disability and Rehabilitation Research NIH National Institutes of Health NRTA Postdoctoral Individual National Research Training Award NSF National Science Foundation OMAR Office of Medical Applications of Research OSERS Office of Special Education and Rehabilitative Services OT occupational therapy OTT Office of Technology Transfer OVR Office of Vocational Rehabilitation PT physical therapy PVA Paralyzed Veterans of America QWB Quality of Well-Being Scale RAPD Research Aiding Persons with Disabilities RCT randomized controlled trial RESNA Rehabilitation Engineering and Assistive Technology of North America RRAC Research Realignment Advisory Committee RR&D Rehabilitation Research and Development RRTC Rehabilitation Research and Training Centers RSA Rehabilitation Services Administration SBIR Small Business Innovative Research SF-36 Standard Form of the Health Status Questionnaire SHMO social health maintenance organizations SIPP Survey of Income and Program Participation SSA Social Security Administration SSDI Social Security Disability Income TDD telecommunications device for the deaf TT technology transfer UDS Uniform Data System for Medical Rehabilitation UI urinary incontinence VA U.S. Department of Veterans Affairs VHA Veterans Health Administration WHO World Health Organization
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--> Contents EXECUTIVE SUMMARY 1 1 INTRODUCTION 24 Rehabilitation: Concepts and Definitions 24 Origins of Science and Engineering in Rehabilitation 27 Origin, Scope, and Organization of the Report 36 2 MAGNITUDE AND COST OF DISABILITY IN AMERICA 40 Major National Surveys 41 Costs of Disability and Rehabilitation 55 Conclusions and Recommendations 60 3 MODELS OF DISABILITY AND REHABILITATION 62 Evolution of Models of Disability 63 A New Model for the Enabling-Disabling Process 65 Conceptual Matrix for Rehabilitation Research 75 Summary and Conclusions 78 Recommendations 80
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--> 4 PATHOLOGY AND IMPAIRMENT RESEARCH 81 Sciences Contributing Knowledge to Studying Pathology and Impairment Research 82 State of Knowledge for Selected Major Causes of Pathology in Adults 87 Conclusions 97 Recommendations, 98 5 FUNCTIONAL LIMITATIONS RESEARCH IN REHABILITATION SCIENCE AND ENGINEERING 100 Background 101 Functional Capacity Index and the 10 Dimensions of Function 108 Conclusions 144 Recommendations 145 6 DISABILITY AND THE ENVIRONMENT 147 Impact of the Physical Environment on the Disabling Process 148 Impact of the Social and Psychological Environments on the Enabling-Disabling Process 154 Conclusions and Recommendations 167 7 RESEARCH ON THE ORGANIZATION, FINANCING, AND DELIVERY OF HEALTH SERVICES 170 Health Services Research Agenda 171 Developing a Health Services Research Capacity in Rehabilitation Science and Engineering 188 Recommendations 189 8 TRANSLATING RESEARCH INTO PRACTICAL APPLICATIONS 191 The Current State of Technology Transfer in Rehabilitation 192 Presuppositions for Technology Transfer 194 Barriers to Information Transfer 200 Technology Transfer Mechanisms in the Practice Professions 201 Current Governmental Mechanisms 210 Conclusions and Recommendations 214
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--> 9 EDUCATION AND TRAINING IN REHABILITATION SCIENCE AND ENGINEERING 217 The Field of Rehabilitation Science and Engineering 217 Support for Education and Research Training in Rehabilitation Science and Engineering 226 Professional Rehabilitation Education and Training, 234 Academic Rehabilitation Education Programs 241 Recommendations, 242 10 ORGANIZATION AND ADMINISTRATION OF FEDERAL RESEARCH PROGRAMS 244 Scope of Federal Research Efforts 244 Major Agencies Involved in Rehabilitation-Related Research 246 General Assessment of Federal Rehabilitation Programs 272 Summary of Possible Options 279 Conclusions and Recommendations 282 11 OVERARCHING RECOMMENDATIONS AND PRIORITIES 293 Recognize the Field of Study 294 Emphasize Priorities 294 Enhance the Federal Effort 295 REFERENCES 299 APPENDIXES AData Collection and Analysis 319 BSummary of Information Sources on Disability and Rehabilitation Research 352 CTaxonomy 378 DCommittee and Staff Biographies 382 INDEX 393 ENABLING AMERICA
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