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National Institute on Disability and Rehabilitation Research (NIDRR)
Long Range Plan for Fiscal Years 1999-2003


Appendix A. Abbreviations and Acronyms

ADA – Americans with Disabilities Act

ADHD – Attention Deficit Hyperactivity Disorder

ADLs – Activities of Daily Living

ARRT – Advanced Rehabilitation Research Training Center

CPS – Current Population Survey

CRPs – Community-Based Rehabilitation Programs

DHHS – Department of Health and Human Services

FIM – Functional Independence Measure

GPRA – Government Performance and Results Act

IADLs – Instrumental Activities of Daily Living

ICDR – Interagency Committee on Disability Research

ICIDH – International Classification of Impairments, Disabilities, and Handicaps

IDEA – Individuals with Disabilitites Education Act

IOM – Institute of Medicine

JTPA – Job Training Partnership Act

NARIC – National Rehabilitation Information Center

NASA – National Aeronautics and Space Administration

NCD – National Council on Disability

NCMRR – National Center for Medical Rehabilitation Research

NHIS – National Health Interview Survey

NIDRR – National Institute on Disability and Rehabilitation Research

NIH – National Institutes of Health

OSEP – Office of Special Education Programs

OSERS – Office of Special Education and Rehabilitative Services

PAS – Personal Assistance Services

RACs – (state) Rehabilitation Advisory Councils

RERC – Rehabilitation Engineering Research Center

RRTC – Rehabilitation Research and Training Center

RSA – Rehabilitation Services Administration

SBIR – Small Business Innovative Research

SIPP – Survey of Income and Program Participation

SSA – Social Security Administration

SSDI – Social Security Disability Insurance

SSI – Supplemental Security Income

VR – Vocational Rehabilitation

WHO – World Health Organization


Appendix B. Planning Process and Participants

To develop a clear, comprehensive plan that meets the needs of the disability community and advances scientific knowledge, NIDRR implemented a collaborative planning process with its many constituents. The planning process was characterized by diversity with varied avenues of input available to a wide range of parties interested in NIDRR's programs. NIDRR solicited input from individuals with disabilities, researchers, service providers, advocates, disability organizations, professional organizations, and individuals who are traditionally underserved.

Steering Committee

In 1995, NIDRR created a Long-Range Plan Steering Committee to consult on the development process. The committee consisted of 15 experts from the constituent community who brought diverse perspectives and experiences to the process. The committee met formally four times in one year and provided other assistance as needed. The major task of the committee was to review input from other sources and make recomendations to NIDRR concerning the plan's design and future planning activities. Appendix C lists the steering committee members.

Public Hearing

A public hearing was held in Washington, D.C., to gather information related to research needs and opportunities for the development of a long-range plan for coordinated research in four areas of disability research: medical and technology rehabilitation, employment, independent living in the community, and capacity-building.

Clifford Brubaker, chair of NIDRR's Long-Range Plan Steering Committee, and the director of NIDRR, co-chaired the hearing. Witnesses had a broad range of perspectives on disability; they included people with disabilities and their family members, advocacy organizations, professional organizations, universities, and service delivery organizations. Representatives from the disability media attended the hearing and published articles about it. Written testimony was accepted for 30 days after the hearing.

Witnesses raised a number of shared concerns in all four areas of disability-related research. These included:

Commissioned Papers

NIDRR commissioned papers in eight subject areas to provide scholarly background for the Long-Range Plan, including a summary of the state-of-the-art in rehabilitation and an analysis of the research needs and opportunities in each area. NIDRR then held a series of workshops on each topic area to solicit feedback on the draft papers and to discuss future research directions. Participants included paper authors, federal representatives, researchers, and servicer providers, including individuals with disabilities and individuals from diverse backgrounds. A list of paper authors and workshop participants follows this summary. In addition, all of the commissioned papers were available to all NIDRR grantees on Web sites and through list-servs for review and comment.

Other Input

NIDRR also considered input from the National Council on Disability, the Interagency Committee on Disability Research, and a myriad of consensus conferences and symposia on topics ranging from employment, income supports, managed health care, technology policy, telecommunications, and the research infrastructure that were sponsored by NIDRR, other government agencies, universities, advocacy groups, and private industry.

Publication of the Plan

NIDRR published a proposed Long-Range Plan in the Federal Register on October 26, 1998, and invited comments from the public. Subsequently, NIDRR published a revised version in the Federal Register on August 20, 1999, that included an analysis of, and response to, the public comments. On December 7, 1999, NIDRR published the final Long-Range Plan, which replaced the previous version.

 

begin new section of appendix B

Long-Range Plan Workshop Series Author and Participant List

Authors of commissioned papers are indicated by boldface type.


Workshop on Employment

Henry McCarthy
Louisiana State University

Michael Millington
Louisiana State University

Douglas C. Strohmer
Louisiana State University

David C. Stapleton
The Lewin Group

Becky Hayward
Research Triangle Institute

Clifford Brubaker
University of Pittsburgh

Suzanne Bruyere
Cornell University

Phil Flench, CEAP
Washington Business Group on Health

Mark Hill
Virginia Commonwealth University

David Johnson
University of Minnesota

David Miller
South Dakota Rehab Services

Ruth Royal-Hill (deceased)
District of Columbia Rehabilitation Services Administration

Tom Seekins
The University of Montana

David Vandergoot
Center for Essential Management Services

Douglas Watson
University of Arkansas

Edward Yelin
University of California-San Francisco

 

Workshop on Physical Medicine and Restoration

Dudley S. Childress
Northwestern University
Rehabilitation Institute of Chicago

Samuel L. Stover, M.D.
University of Alabama at Birmingham

Bruce M. Gans, M.D.
Rehabilitation Institute of Michigan

Murray Goldstein, M.P.H, D.O.
United Cerebral Palsy Research
and Educational Foundation

Marvin Brooke, M.D.
Tufts New England Medical Center

Chukuka S. Enwemeka
University of Kansas Medical Center

Thomas Findley, M.D.
UMD NJ

Wayne Gordon
Mt. Sinai Medical Center

Margaret Stineman, M.D.
University of Pennsylvania

Sandra Welner, M.D.

 

Workshop on Rehabilitation Engineering and Technology

Douglas A. Hobson
University of Pittsburgh

Richard A. Foulds
University of Delaware

Lawrence A. Scadden
National Science Foundation

Ronald L. Mace, FAIA
Barrier Free Environments Inc.

Nell Bailey
RESNA

Don Barrett
OSERS
U.S. Department of Education

Diane Bryen
Temple University

Dudley S. Childress
Rehabilitation Institute of Chicago

Dixon Cleveland
LC Technologies

Alexandra Enders, OTR
University of Montana

Judith E. Harkins
Gallaudet Research Institute

Jane Hauser
OSEP
U.S. Department of Education

Clifford Lanham

A. Keith Miller
Sandia National Laboratory

John Nelson
Rehabilitation Services Administration

William Paul
United Technologies Corporation

William Peterson
National Rehabilitation Hospital

Doris Rouse
Research Triangle Institute

Sheldon Simon, M.D.
Ohio State University Hospital

Gregg Vanderheiden
Trace Center/University of Wisconsin


Workshop on Independent Living

Corrine Kirchner
American Foundation for the Blind

Simi Litvak
World Institute on Disability

Adrienne Asch
Wellesley College

Fabricio Balcazar
University of Chicago-IL

Sharon Barnartt
Gallaudet University

Michael Donnelly
Berkeley CIL

Carol J. Gill
Health Resource Center
Rehabilitation Institute of Chicago

Harlan Hahn
University of Southern California

Margaret A. Nosek
Baylor College of Medicine
Center for Research on Women with Disabilities

Anita Silvers
San Francisco State University

John Youngbauer
University of Kansas

 

Workshop on Community Integration

Judith A. Cook
University of Illinois at Chicago

Jessica A. Jonikas, M.A.
University of Illinois at Chicago

Charlie Lakin
University of Minnesota

Joseph G. Hollowell, M.D., M.P.H.
Centers for Disease Control and Prevention

William Anthony
Boston University
Center for Psychiatric Rehabilitation

Mary Ann Beall

David Braddock
University of Illinois, Chicago

Neil Brown
CMHS

Sharon Davis
The Arc

Thomas K. Gilhool, Esquire
Public Interest Law Center of Philadelphia

Wayne Gordon
Mt. Sinai Medical Center

Pat Laird, J.D.
Administration on Developmental Disabilities

Geronimo Robinson
Community Residences

Patti Wilson
North Shore Arc

 

Workshop on Disability Policy and Services

Gerben DeJong
National Rehabilitation Hospital Research Center

Bonnie O'Day
National Rehabilitation Hospital Research Center

Donald E. Galvin
Commission on Accreditation of Rehabilitation Facilities

James R. Knickman
Robert Wood Johnson Foundation

Barbara Altman
Agency for Health Policy Research

Jerome Bickenbach
Queen's University

Fred Collignon
University of California-Berkeley

Diane Golden
Missouri Assistive Technology

Ken Hurdle
Senate Office of Research
California State Senate

Debbie Kaplan
Issue Dynamics Inc.

Clifford Lanham

Mitchell LaPlante
University of California, San Francisco

Leo A. McManus
Social Security Administration

Kay Schriner
University of Arkansas

Richard Scotch
University of Texas-Dallas

Beverlee Stafford
Rehabilitation Services Administration

David Stapleton
The Lewin Group

Sara Watson
Family Policy Council

Jane E. West
Consultant to the Social Security Administration

Ilene Zeitzer
Social Secuirty Administration Office of Disability


Workshop on Dissemination and Utilization

Laura Edwards
Pennsylvania College of Optometry

Ronald L. Mace, FAIA
Barrier Free Environments,Inc.

Samuel L. Stover, M.D.
University of Alabama at Birmingham

Peter Caws
George Washington University

Beth Haller
Towson State University

Cyndi Jones
Mainstream Magazine

Kym King
Media Development Group

Don Olson
Rehabilitation Institute of Chicago

Elaine Ostroff
Adaptive Environment Center

Alfonso B. Perez
Fiesta Educativa

Kerry Sperry
Research America

Susan Stoddard
InfoUse

Thomas Stripling
Paralyzed Veterans of America

Glenda V. Such, M.Ed.
Abilitech

Steven J. Taylor
Syracuse University

John D. Westbrook
National Center for the Dissemination of Disability Research

 

Workshop on Capacity-Building

David B. Gray
Washington University

Harley E. Flack
Wright State University

Max J. Starkloff
Paraquad

Kate Pew Wolters
Steelcase Foundation

M. Carolyn Baum
Washington University Medical School

Carole Burnett
Howard University

Alexandra Enders, OTR
University of Montana

Fredrick E. Menz
University of Wisconsin-Stout

Marian A. Minor, PT
University of Missouri at Columbia

Jerry C. Parker
University of Missouri at Columbia

David Roberts
University of Missouri at Columbia

Virginia W. Stern
American Association for the Advancement of Science


Appendix C. Steering Committee Members

Clifford Brubaker (chair) is the dean of the School of Health and Rehabilitation Sciences at the University of Pittsburgh. Prior to this position, he was a professor at the University of Virginia for 18 years. He is a nationally known researcher in seating and mobility and a leader in assistive technology and rehabilitation engineering. He is a founding member of the Rehabilitation and Assistive Technology Association (RESNA) and served as its president in 1993–94. He has received patents for several inventions. Brubaker holds a Ph.D. in exercise physiology.

Robert H. Bruininks is the executive vice president and provost of the University of Minnesota and a professor of educational psychology. He has long-standing interests in educational evaluation and accountability, school-linked services, and strategic planning and educational reform. He established The Institute on Community Integration, a university-affiliated program on developmental disabilities, in 1985 to provide interdisciplinary training, exemplary services, and information and applied research on behalf of people with developmental disabilities and their families. Bruininks holds a Ph.D. in educational psychology.

Ricardo R. Fernández is president of Herbert H. Lehman College, a four-year liberal arts college of The City University of New York. He has held academic and administrative positions at Marquette University and the University of Wisconsin-Milwaukee, and served as a Fellow of the American Council on Education. His research interests include educational equity and the recruitment, retention, and advancement of minority students, faculty, and academic staff in higher education. Fernández holds a Ph.D. in romance languages from Princeton University.

James Paul Firman is president and CEO of the National Council on the Aging Inc. Firman's previous positions include president of the United Seniors Health Cooperative and senior program officer at the Robert Wood Johnson Foundation. He is a widely recognized expert and consumer advocate on many issues affecting older persons, such as home care, long-term care, health insurance and financing issues, and intergenerational programs. Firman has an Ed.D. in education from Columbia University.

Harley E. Flack (deceased) was the president of Wright State University. Flack was previously provost and executive vice president at Rowan College of New Jersey and vice president for academic affairs and dean of the faculty at the State University of New York at Old Westbury. From 1974-87, Flack served as the founding dean and professor of the college of Allied Health Sciences at Howard University. He also served as a strategic planning consultant for more than 25 institutions in the United States. Flack was president of the National Society of Allied Health and held a Ph.D. in counselor education from the State University of New York at Buffalo.

Donald E. Galvin is president and CEO of the Commission on Accreditation of Rehabilitation Facilities, the preeminent standards-setting and accrediting body promoting quality services for people with disabilities. From 1989–93, Galvin was the vice president for programs of the Washington Business Group on Health and director of the Institute for Rehabilitation and Disability Management. He was associate superintendent of education for the Michigan Department of Education and also served as the director of its Bureau of Rehabilitation Services. Galvin has a Ph.D. in counseling and guidance.

Murray Goldstein is the medical director of the United Cerebral Palsy Research and Educational Foundation and is the interim executive director of the United Cerebral Palsy Associations of the United States. He was formerly the director of the National Institute of Neurological Disorders and Stroke of the National Institutes of Health and assistant surgeon general in the United States Public Health Service. Dr. Goldstein is recognized internationally as a leader in the clinical, scientific, and science administration aspects of disorders of the nervous system.

Joseph G. Hollowell, Jr., M.D., is the medical chief of the Office of Disability and Health at the Centers for Disease Control and Prevention. He is the former chief of the Developmental Disabilities Branch of the Division of Birth Defects and Developmental Disabilities. He is board-certified in pediatrics and has a master's in Public Health from the University of California-Berkeley. He is a nationally recognized expert on low-birthweight infants and children with disabilities. His professional interests include the study of growth in children, pediatric endocrinology, and issues surrounding the definitions, understanding, and prevention of disabilities.

James R. Knickman is vice president at The Robert Wood Johnson Foundation, a national philanthropy that awards grants focusing on efforts to improve the health and health care of Americans. Knickman directs grantmaking programs in health policy research, evaluation of innovations related to health care delivery and health promotion, and care received by the chronically ill. Prior to joining the foundation, Knickman was a professor of Health Administration at New York University's Robert F. Wagner Graduate School of Public Service. Currently, he serves on the Board of Trustees of the Robert Wood Johnson University Hospital. Knickman received his Ph.D. in public policy analysis from the University of Pennsylvania.

Simi Litvak is director of the Research and Training Center on Personal Assistance Services at the World Institute on Disability (WID) in Oakland, Calif. Formerly the research director of the Research and Training Center on Public Policy in Independent Living at WID, Litvak is a nationally known expert in independent living and personal assistance. She has 30 years of experience in the disability field as a teacher, researcher, policy analyst, policy-maker, and rehabilitation professional. Most recently she served as a member of the President's Health Care Reform Task Force. Litvak holds a master's degree and a Ph.D. in studies in behavioral disabilities from the University of Wisconsin-Madison.

Ronald L. Mace (deceased) was a nationally recognized architect and product designer. He was president of Barrier Free Environments Inc. in Raleigh, N.C., a firm that specializes in design for disabled and older people. He also was director of the Center for Universal Design at the School of Design at North Carolina State University. He was elected to the College of Fellows for the American Institute of Architects for his contribution to the profession in promoting accessible and universal design. He had received numerous awards, including the Distinguished Service Award of the president of the United States for long-term contributions to furthering the rights and independence of people with disabilities.

Audrey L. McCrimon is the assistant secretary of the Illinois Department of Human Services. As the assistant secretary, McCrimon directs the agency's core training strategies, customer service and provider assistance, and Americans with Disabilities Act activities. Prior to becoming assistant secretary, McCrimon had been the director of the Illinois Department of Rehabilitation Services, an agency serving 200,000 state residents with disabilities. Before joining the state government, McCrimon served as deputy commissioner on disability for the Chicago Department on Aging and Disability and was nominated by the President in 1994 to serve on the National Council on Disability. McCrimon holds a master's degree in education from Northern Illinois University.

Lawrence A. Scadden is senior program director for the National Science Foundation's Program for Persons with Disabilities. Previously, Scadden served as director of Technology Application Programs for the Electronic Industries Foundation. He served as the first deputy director of the National Institute on Disability and Rehabilitation Research. Scadden is a nationally known expert on technology applications for people with disabilities and the design of accessible mass market electronic products. Scadden holds a master's degree in experimental psychology and a Ph.D. in visual sciences from the University of the Pacific.

Max J. Starkloff is the founder and president of Paraquad Inc. Starkloff was co-founder and elected president of the National Council of Independent Living from 1983–85. He was appointed to the President's Commission on White House Fellowships by the President in 1993. Mr. Starkloff is an internationally recognized leader in independent living and has received acclaim from several humanitarian groups.

Samuel L. Stover, M.D., served as medical director of the Spain Rehabilitation Center, project director for the Research and Training Center on Spinal Cord Injury, and director of the National Spinal Cord Injury Statistical Center. Dr. Stover is past president of the American Spinal Cord Injury Association. In June 1994, he retired as chairman of the Department of Rehabilitation Medicine and was named Professor Emeritus. He is a nationally recognized expert in urologic management of persons with spinal cord injury, and skin and pulmonary complications following spinal cord injury. Dr. Stover holds a medical degree in pediatrics from the Jefferson Medical College.

Kate Pew Wolters was the Board Chair of the Steelcase Foundation, the corporate foundation of Steelcase Inc., the world's largest manufacturer of office furniture. Prior to assuming this position, she served as executive director of the foundation. She also has served as the director of the Grand Rapids Center for Independent Living and as a clinical social worker. Wolters was a presidential appointee to the National Council on Disability.


Appendix D. NIDRR Program Mechanisms and Funding Patterns

NIDRR operates a number of program mechanisms to support research and related activities as authorized by the Rehabilitation Act. These mechanisms vary in purpose, duration, and resource allocation. Rehabilitation Research and Training Centers (RRTCs) and the Rehabilitation Engineering Research Centers (RERCs) are the primary recipients of NIDRR resources. As depicted in figure 1.2, these programs received 22.8 percent and 10.78 percent, respectively, of the $70 million appropriated to NIDRR in fiscal year 1996.

Support of RRTCs is specified in the statute. RRTCs are funded to conduct coordinated and advanced programs of research, training, and information dissemination in general problem areas that are specified by NIDRR. RRTCs are expected to be multidisciplinary; involve disabled consumers and their families; provide advanced research training, as well as training for rehabilitation practitioners, consumers, and families; and provide undergraduate education. RRTCs are designed to be national Centers of Excellence and resources for the disability and rehabilitation field, providing information and technical assistance to a broad constituency. Each RRTC is typically funded for five years with an option to recompete. In fiscal year 1996, there were 45 RRTCs. The average annual base award was $507,000, with a range of funding from $400,000 to $700,000. Some of the topic areas of RRTCs include secondary complications in spinal cord injury; community integration of people with traumatic brain injury (TBI); mental retardation; or mental illness; vocational rehabilitation outcomes; independent living; interventions for children with severe behavior problems; aging with a disability; and personal assistance services.

RERCs also are provided for in the legislation, and are expected to conduct research of an engineering and technological nature to design, develop, and test technologies, equipment, assistive devices, and methods to remove environmental barriers, and innovative models for rehabilitation technology service delivery. The 1992 amendments to the Rehabilitation Act specified an increased emphasis on training and collaboration with rehabilitation service delivery efforts. NIDRR also expects RERCs, where appropriate, to promote the transfer of new rehabilitation technologies and engineering knowledge into the manufacturing, marketing, and distribution processes of industry. In fiscal year 1996, NIDRR funded 16 RERCs at a total cost of $10,764,000; the average award was $673,000 annually. These are nearly always five-year awards, with the potential to recompete. Some of the topical areas of the RERCs include prosthetics and orthotics, wheeled mobility, hearing enhancement, communication, computer adaptations, and telecommunications.

Table 1

Percentage of Grant and Contract Funds by Topic Area
Fiscal Year 1996
Topic Area Percentages
Health and Function

Technology for Access and Function

Employment

Independent Living and Community Integration

Associated Research Areas

Knowledge Dissemination and Utilization

Capacity-Building

20

20

15

21

3

15

6

100 percent


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