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Suggested Citation:"FRONT MATTER." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
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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

Suggested Citation:"FRONT MATTER." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
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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.

Suggested Citation:"FRONT MATTER." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

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

Suggested Citation:"FRONT MATTER." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
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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

Suggested Citation:"FRONT MATTER." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

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-

Suggested Citation:"FRONT MATTER." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

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

Suggested Citation:"FRONT MATTER." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
×

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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Suggested Citation:"FRONT MATTER." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
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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

Suggested Citation:"FRONT MATTER." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
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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

Suggested Citation:"FRONT MATTER." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
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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

Suggested Citation:"FRONT MATTER." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
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Suggested Citation:"FRONT MATTER." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
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Suggested Citation:"FRONT MATTER." Institute of Medicine. 1997. Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Washington, DC: The National Academies Press. doi: 10.17226/5799.
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The most recent high-profile advocate for Americans with disabilities, actor Christopher Reeve, has highlighted for the public the economic and social costs of disability and the importance of rehabilitation. Enabling America is a major analysis of the field of rehabilitation science and engineering. The book explains how to achieve recognition for this evolving field of study, how to set priorities, and how to improve the organization and administration of the numerous federal research programs in this area.

The committee introduces the "enabling-disability process" model, which enhances the concepts of disability and rehabilitation, and reviews what is known and what research priorities are emerging in the areas of:

  • Pathology and impairment, including differences between children and adults.
  • Functional limitations—in a person's ability to eat or walk, for example.
  • Disability as the interaction between a person's pathologies, impairments, and functional limitations and the surrounding physical and social environments.

This landmark volume will be of special interest to anyone involved in rehabilitation science and engineering: federal policymakers, rehabilitation practitioners and administrators, researchers, and advocates for persons with disabilities.

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