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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.
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.
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:
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.
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.
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.
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Authors of commissioned papers are indicated by boldface type.
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
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.
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
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
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
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
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
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
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 199394. 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 198993, 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 198385. 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.
Figure 1.1
RRTCs-Rehabilitation Research and Training Centers
RERC-Rehabilitation Engineering Research Centers
FIR-Field-Initiated Research
SCI-Spinal Cord Injury Systems
R&D-Research and Demonstration
D&U-Knowledge Dissemination and Utilization
ADA-Technical Assistance on Americans with Disabilities Act
RTG-Research Training Grants
SBIR-Small Business Innovative Research
Fellowships-Fellowships
MRDP-Minority Research and Development Program
Other-Conferences, planning, evaluation, priority and peer review, and more
Figure 1.2
The statute also provides for directed research, carried out in the Research and Demonstration (R&D) Projects program, a program of discrete research grants directed toward solving specific problems identified by NIDRR. The Knowledge Dissemination and Utilization (KD&U) Program, and the program of Technical Assistance to Facilitate Implementation of the Americans with Disabilities Act, better known as the Disability and Business Technical Assistance Centers (DBTACs), are also examples of NIDRR-directed priorities in discrete project areas. These programs support grants for periods of three to five years, and together accounted for $15 million in 1996. Examples of R&D projects include development of model systems for traumatic brain injury and burns, the emerging universe of disability, and unique issues of women with disabilities. KD&U projects include the National Center for Dissemination of Rehabilitation Research, a national clearinghouse on rehabilitation information, and a resource center on integration and mental retardation.
The law also provides for two capacity-building programsFellowships and Advanced Rehabilitation Research Training Grants (ARRTs). Fellowships are awarded to individuals in various stages of their careers to support one year of independent research in a selected area of disability and rehabilitation. ARRTs are awarded to institutions of higher education to support advanced training in research in any discipline related to disability and rehabilitation. These grants which are typically for five years, fund stipends to trainees, mentoring, didactic instruction, hands-on research experience, and opportunities for presentation and publication.
The statute provides that NIDRR support a service demonstration and research program directed at developing and evaluating improved methods and systems of care for individuals with spinal cord injuries, the Model Demonstration Projects for Spinal Cord Injury, known commonly as the SCI Model Systems. Appropriations language requires that $7 million be allocated to this program. There are currently 18 model systems, with broad geographic distribution serving people in inner city, rural, and suburban areas.
NIDRR created a program of field-initiated (FI) research in 1984 in response to recommendations from the field. The purpose of this program is to encourage researchers to submit research and development projects outside those specified by NIDRR, to supplement and complement NIDRR's directed research portfolio, and to address research issues in promising and innovative ways. The level of resources allocated to this program has varied substantially over the years, but in fiscal year 1996, 53 FI grants, including 20 new awards, were made for $6.5 million, or close to 10 percent of the NIDRR appropriation. NIDRR has begun to increase its investment in the FI Program in response to recommendations from the field. FI research projects cover all aspects of NIDRR's domain, including employment, independent living, medical rehabilitation, development of new technologies, all disability populations, and a full range of methodologies.
To relate NIDRR's current pattern of funds allocation to the goals that
underlie this plan, an effort has been made to classify NIDRR's current
projects according to the major subject areas (health and function, access
and functional independence through technology, employment, and independent
living and community integration), plus policy research, capacity-building,
and knowledge dissemination. This classification was complicated enormously
by the fact that NIDRR's projects and centers reflect the multifaceted nature
of disability and the holistic nature of rehabilitation. Many, if not most,
projects and centers are directed at solutions to problems in more than
one subject area. For example, Spinal Cord Injury Model projects are concerned
with health and function, return to the community, and employment. This
classification overlooks the large amount of resources directed to knowledge
dissemination and capacity-building, and to some extent policy research,
in all centers and projects. However, it was determined that a non-duplicative
representation of the allocation of funds was essential; therefore, arbitrary
decisions were made to classify each center or project in only one subject
area. Programs that included either health and function or technology development
were classified in those areas, regardless of their other components. However,
due to the substantial work on independent living and employment done in
the Spinal Cord Injury Model projects, one-quarter of their funds were counted
in each of these two categories and one-half in health and function. As
one of its research management improvements, NIDRR is constructing a database
that will permit more precise calculations of resource distributions. Table
1 depicts this classification by topical area.
Table 1
| 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 |