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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
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Copyright 1997 by the National Academy of Sciences. All rights reserved.
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Cover art: Will Mason, National Academy Press
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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
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
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-
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
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
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
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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ENABLING AMERICA
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