RehabWire - Volume 6, Number 2, February, 2004

RehabWire for February welcomes the Rehabilitation Research and Training Centers for FY 2003. They exemplify the wide range of disability and rehabilitation research funded each year.

NIDRR Projects: Research in the New Millennium.

Rehabilitation Research and Training Center in Neuromuscular Diseases (RRTC/NMD), University of California, Davis (H133B031118) led by Craig McDonald, MD. Theresa San Agustin, MD, Project Officer.
Abstract: The purpose of the Rehabilitation Research and Training Center in Neuromusucular Diseases is to enhance the health, function, and quality of lives of persons with neuromuscular diseases. The goals of this project include: conducting research that continues to address rehabilitation needs, particulary related to exercise, nutrition, pain, secondary conditions, and the quality of life of individuals with neuromuscular diseases; developing and evaluating new or emerging technologies and interventions that provide the information needed to improve employment, community integration, and quality of life outcomes for this population of individuals with disabilities; and developing and evaluating appropriate health promotion and wellness programs that enhanced the ability of individuals with neuromuscular disease to be physically active and participate in recreational activities.
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Aging-Related Changes in Impairment for Persons Living with Physical Disabilities, Los Amigos Research & Education Institute, Inc. (H133B031002) led by Bryan J. Kemp, PhD. Kristi E. Wilson, PhD, Project Officer.
Abstract: Persons who have a disabilities are now living into middle age and late life in ever-increasing numbers. However, many of these people appear to be experiencing premature age-related changes in health and functioning. This project tests a model for improved understanding of these problems and interventions to help alleviate them. Persons who are experiencing these kinds of problems and their families are included in all center projects.
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Rehabilitation Research and Training Center on Personal Assistance Services, University of California, San Francisco (H133B031102) led by Charlene Harrington, PhD, RN. David W. Keer, Project Officer.
Abstract: This project provides research, training, dissemination, and technical assistance on issues of personal assistance services (PAS) in the United States. Center projects focus on: (1) the relationship between formal and informal PAS and caregiving support, and the role of AT in complementing PAS; (2) policies and programs, barriers, and new models for PAS in the home and community; (3) workforce development, recruitment, retention, and benefits; and (4) workplace PAS models that eliminate barriers to formal and informal PAS and AT at work.
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Rehabilitation Research and Training Center on Aging with Developmental Disabilities, University of Illinois at Chicago (H133B031134) led by Tamar Heller, PhD. Margaret Campbell, PhD, Project Officer.
Abstract: The mission of this project is to have a sustained beneficial impact on the health and community inclusion of adults with intellectual and developmental disabilities (I/DD) as they age through a coordinated set of research, training, and dissemination activities. Major goals are: (1) improving health and function of adults with I/DD, (2) enhancing caregiving supports and transition planning among older caregivers and other family members, and (3) promoting aging and disability friendly environments that enable adults with I/DD to participate in community life. Projects promoting health and functioning include: examination of age-related changes, epidemiological surveys, research on health care utilization, and development of community-based health promotion interventions.
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RRTC on Technology Promoting Integration for Stroke Survivors: Overcoming Social Barriers, Rehabilitation Institute Research Corporation (H133B031127) led by Elliot J. Roth, MD. Thomas Corfman, Project Officer.
Abstract: This project develops and evaluates a sequence of robotic training and assistive devices that are designed with the idea of promoting efficient function in the workplace or at home, and with the further intent that they form a basis for the development of appropriate technologies to allow people with disabilities ready access to existing facilities in the community. Other projects at this center include: the use of emotionally expressive and narrative writing to facilitate coping and adaptation after stroke, computerized training for conversational scripts that facilitate access to the community and work force, and a consumer-directed, dynamic assessment methodology for evaluating community living and work participation environments and technologies for use by people who have a stroke.
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Rehabilitation Research and Training Center on Policies Affecting Families of Children with Disabilities, University of Kansas (H133B031133) led by H.R. Turnbull, LLM and Ann Turnbull, EdD. Cate Miller, PhD, Project Officer.
Abstract: This center conducts eight research projects on the effects of the policies of governments, systems, networks, and agencies on the family quality of life and community integration (FQOL/FCI) of families who have children with developmental disabilities or emotional-behavioral disabilities or both. The center’s analytical framework holds that the core concepts shape policies; policies shape services; policies and services should be coordinated and delivered through partnerships; enhanced FQOL/FCI occurs when there is coherence among core concepts, coordinated policies delivered through partnerships, and coordinated services delivered through partnerships; and influencing factors must invariably be taken into account.
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Rehabilitation Research and Training Center on Secondary Prevention Through Exercise: A Participatory Approach for People with Spinal Cord Injury, National Rehabilitation Hospital/MedStar Research Institute (H133B031114) led by Suzanne L. Groah, MD. Kristi E. Wilson, PhD, Project Officer.
Abstract: This project systematically and comprehensively addresses the role and impact of physical activity in the prevention of secondary conditions in people with spinal cord injury (SCI). Initially, the project establishes critical, yet-undefined physiological responses to exercise in SCI and comprehensively examines cardiovascular disease risk in individuals with SCI applying accepted guidelines used in the able-bodied population. The project develops exercise formats specifically designed according to severity and chronicity of SCI to address the prevention of and knowledge regarding osteoporosis and other secondary conditions. In addition, the project determines whether regular exercise is related to fewer secondary conditions. These research findings feed into four training activities that include a peer mentoring program for newly injured people with SCI, a consumer-driven education curriculum for physical therapy and medical students, a state-of-science and training conference, and the development of a virtual resource network on exercise and prevention.

Research and Training Center on Community Living (RTC/CL), University of Minnesota (H133B031116) led by Charlie Lakin, PhD. Dawn Carlson, PhD, MPH, Project Officer.
Abstract: The Center conducts research, training, technical assistance, and dissemination to enhance inclusion and self-determination of citizens with intellectual and developmental disabilities. The research program has six outcome areas: policy studies, database supports for full participation, self-determination and consumer-control, workforce development, and quality assessment and improvement systems. The research program within the priority areas includes: (1) research syntheses of the state of knowledge and practice; (2) secondary analyses of high quality, topically relevant national and state data sets; (3) case studies of best practices; (4) evaluation of demonstration efforts to improve policy and practice; (5) survey and interview studies of critical issues; and (6) group process studies with key constituencies.
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Missouri Arthritis Rehabilitation Research and Training Center (MARRTC), University of Missouri (H133B031120) led by Jerry C. Parker, PhD. Theresa San Agustin, MD, Project Officer.
Abstract: The purpose of the Missouri Arthritis Rehabilitation Research and Training Center is to provide leadership at the national level in support of three key objectives: to reduce pain and disability, to improve physical fitness and quality of life, and to promote independent living and community integration for persons with arthritis of all ages in the United States. State-of-the-science rehabilitation research addresses the needs of persons with arthritis in the following areas: (1) home and community-based self-management programs, (2) benefits of exercise and physical fitness, and (3) technologies available to the broad populations of persons with arthritis in the environments where they live, learn, work, and play.
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Rehabilitation Research and Training Center on Disability in Rural Communities, University of Montana (H133B030501) led by Tom Seekins, PhD. Joyce Y. Caldwell, Project Officer.
Abstract: The research conducted by this project improves the employment status of people with disabilities in the rural U.S., enhances their ability to live independently, and advances the science of rural disability studies. Four core areas comprise eleven research projects in rural employment and economic development; rural health and disability; rural community transportation and independent living; and rural policy foundations. Projects include: (1) develop scientific methods to measure how rural environments influence an individual’s community participation; (2) collaborate with very small rural businesses to employ people with disabilities; (3) improve rural transportation options; and (4) create programs to prevent or improve secondary conditions.
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Rehabilitation Research and Training Center on Demographics and Statistics, Cornell University (H133B031111) led by Andrew J. Houtenville, PhD. David W. Keer, Project Officer.
Abstract: The RRTC on Demographics and Statistics bridges the divide between the sources of disability data and the users of disability statistics. The project conducts research exploring the reliability of existing data sources and collection methods, and studies the potential to improve current and future data collection efforts. In addition, the project utilizes existing data sources to provide a comprehensive and reliable set of statistics, and increase access to and understanding of how statistics can be used effectively to support decision making.
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Rehabilitation Research and Training Center on Community Integration of People with Psychiatric Disabilities, University of Pennsylvania (H133B031109) led by Mark Salzer, PhD. Bonnie Gracer, Project Officer.
Abstract: The goal of this Center is to insure that people with psychiatric disabilities not only move from institutional care to more integrated settings but also are free to choose to participate in a wide range of roles in their communities. The Center’s five-year mission focuses on three core areas: (1) Factors Associated with Community Integration develops a coherent conceptual framework for community integration and identifies key factors, intervention models, and appropriate instrumentation and research methodologies; (2) Policies Associated with Community Integration identifies, develops, and assesses the effectiveness of a range of public policies and system strategies promoting community integration and engage key stakeholders in learning about and utilizing the Center’s findings; and (3) Intervention Supports that Assist Community Integration identifies, develops, and assesses the effectiveness of support service interventions promoting community integration, and provides training, technical assistance, and dissemination based on those initiatives to change behaviors and practices of key stakeholders.

Rehabilitation and Training Center on Community Integration in Persons With TBI, The Institute for Rehabilitation and Research (TIRR) (H133B031117) led by Angelle M. Sander, MD and Margaret Struchen, PhD. Cate Miller, PhD, Project Officer.
Abstract: The research program of this project includes: development and evaluation of a social network mentoring program; an investigation of racial/ethnic differences in acceptance of disability, community integration needs, barriers, and supports; a distance learning program to train family members in rural areas as paraprofessionals; assessment of employers’ attitudes toward persons with TBI and a pilot educational intervention to reduce attitudinal barriers in the workplace; a randomized clinical trial to assess the effectiveness of a brief substance abuse intervention; a qualitative exploration of intimacy following TBI; and a study investigating the role of social communication abilities and environmental factors on social integration.

Multiple Sclerosis Rehabilitation Research and Training Center, University of Washington (H133B031129) led by George H. Kraft, MD. David W. Keer, Project Officer.
Abstract: This center conducts rehabilitation research that: (1) Develops new interventions and practice in the areas of disease suppression, strength enhancement, identification of medication responders, depression management, and pain control. (2) Promotes pathways to participation utilizing survey methodology and in-depth qualitative interviews to explore complex interaction among multiple variables with a modeling of factors that predict differing levels of participation and identifying early interventions that can improve a deteriorating course. (3) Facilitates enhanced participation through training, technical assistance, and dissemination through professional meetings, publications, and a State-of-the-Science conference.
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A full list of current and previously funded RRTCs can be found at

We at NARIC would like to acknowledge the passing of Dr. Sylvia Walker, Director of Howard University’s Center for Disability and Socioeconomic Policy Studies and its research and training center Access to Rehabilitation and Empowerment Opportunities for Minority Persons with Disabilities. Dr. Walker’s contribution to disability and rehabilitation research, in particular her work in capacity building for minority research, will influence researchers for years to come. She will be missed.

New Research: Selections from REHABDATA

Carter, G. T., England, J. D., Hecht, T. W., Han, J. J., Weydt, P., Chance, P. F. (2003) Electrodiagnostic evaluation of hereditary motor and sensory neuropathies. Physical Medicine and Rehabilitation Clinics of North America, 14(2), 347-363. NARIC Accession Number J45668. Project Number(s): H133B980008.
Abstract: Article discusses the use of electrodiagnostic testing for the diagnosis, classification, and pathophysiology of hereditary motor and sensory neuropathies. Areas of future research are also discussed. Rosenau, N., Walker, P. (2003) Strategies and challenges in supporting children with complex medical needs. TASH Connections (formerly TASH Newsletter). NARIC Accession Number: J45858. Project Number(s): H133B980047. Abstract: Article reports on efforts to support families who want to keep their children with severe disabilities and complex medical needs at home. Strategies that promote the idea that all children should live in families, as well as challenges to implementing those strategies, are discussed.

Lindsey, L. (2003) Osteoporosis and spinal cord injury. Research Review, 5(1), 1-4. NARIC Accession Number: O14658. Project Number(s): H133B980016.
Abstract: Fact sheet provides information on the effects of osteoporosis on spinal cord injury (SCI). Discusses how it affects individuals with SCI, how it is diagnosed, methods of prevention and treatment, and current research projects.

Green, B. L., Everhart, M. C., Gettmen, M. G., Gordon, L., Friesen, B. (2003) Mental health consultation in Head Start: Selected national findings: Mental health services survey report. NARIC Accession Number: O14840. Project Number(s): H133B990025.
Abstract: Presents results from a national survey of Head Start programs regarding the effectiveness of mental health services provided in early childhood settings. Findings were drawn from 802 staff surveys and 154 parent surveys representing 79 Head Start programs. Report outlines: (1) how mental health services are structured in Head Start; (2) beliefs among parents and staff about how best to deliver mental health services; (3) staff and parent perceptions about the effectiveness of their mental health services and the kinds of outcomes achieved; and (4) differences in various groups of staff, programs, or parents that influence implementation of promising practices or perceptions of program effectiveness.

Burkhauser, R. V., Stapleton, D. C. (2003) Employing those not expected to work: The stunning changes in the employment of single mothers and people with disabilities in the United States in the 1990s. NARIC Accession Number: O15028. Project Number(s): H133B980038.
Abstract: Report compares the dramatic changes in the level of government benefits provided to single mothers and people with disabilities, especially in the 1990s. While welfare reforms and economic growth during the 90s led to a dramatic increase in the employment of single women with children, the employment rate of individuals with disabilities dramatically declined, and continued to decline, in spite of peak periods of economic growth over the business cycle.

Turner, E. (2003) Personal assistance services in the workplace. Journal of Vocational Rehabilitation, 18(2), 69-70. NARIC Accession Number: J45648. Project Number(s): H133B980036.
Abstract: Article serves as an introduction to a series of articles that examine issues surrounding the use of personal assistance services (PAS) for employees with disabilities. Topics covered in subsequent articles include: the evolution of PAS as a workplace support, finding the right personal assistant (PA), using a PA in the workplace, characteristics of an effective PA, workplace PAS as a reasonable accommodation, PAS and assistive technology, barriers, federal regulations as disincentives, and strategies for improving integration outcomes for people with disabilities.

MacDonald-Wilson, K. L., Rogers, E. S., Massaro, J. (2003) Identifying relationships between functional limitations, job accommodations, and demographic characteristics of persons with psychiatric. Journal of Vocational Rehabilitation, 18(1), 15-24. NARIC Accession Number: J45642. Project Number(s): H133B990023.
Abstract: Study examines the relationship between the types and frequency of functional limitations experienced by employees with psychiatric disabilities and the related accommodations provided in supported employment programs. Cognitive limitations were the most prevalent type reported, followed by social, physical, and emotional/other. The presence of a cognitive limitation was the most consistent predictor of the number of accommodations provided. There was a significant relationship between the type of functional limitation and the number and type of accommodations received. There were no significant relationships found between any other clinical or demographic factors, functional limitations, or reasonable accommodations.

Stodden, R. A., Stodden, N. J., Kim-Rupnow, W. S., Thai, N. D.,Galloway, L. M. (2003) Providing effective support services for culturally and linguistically diverse persons with disabilities: Challenges and recommendations. Journal of Vocational Rehabilitation, 18(3), 177-189.NARIC Accession Number: J45661. Project Number(s): H133B980043.
Abstract: Research review examines the challenges faced by researchers, vocational rehabilitation (VR) services providers, and postsecondary education instructors and support personnel in providing effective support services to culturally and linguistically diverse individuals with disabilities. Barriers to providing effective services include: (1) lack of cultural sensitivity and knowledge; (2) failure to account for environmental determinants of disability, including natural, social, cultural, and built environments; and (3) inadequacies of current research methodology, approaches by service systems, and postsecondary education. Recommendations for improving research and VR services are provided.

Harvey, R. L. (Ed.) (2003) Motor recovery after stroke. Physical Medicine and Rehabilitation Clinics of North America, 14(1S). NARIC Accession Number: R08311. Project Number(s): H133B980017.
Abstract: Speakers at a symposium wrote the articles in this issue, which focuses on motor recovery after stroke. Topics discussed include: new therapies based on neuroplasticity and use-dependent cortical reorganization, functional magnetic resonance imaging in stroke recovery, functional and structural plasticity in motor cortex, constraint-induced movement therapy, neuromuscular electrical stimulation, treadmill training with partial body weight support, amphetamines and related drugs, growth factors and stem cells, the therapeutic effects of cellular therapy, and neuronal transplantation.

Arnold, N., Seekins, T., Ipsen, C., Colling, K. (2003) Self-employment for people with disabilities in the United States: A recommended process for vocational rehabilitation agencies. Australian Journal of Career Development, 12(1), 49-57. NARIC Accession Number: J45675. Project Number(s): H133B030501.
Abstract: Article describes a process developed to assist vocational rehabilitation agencies and counselors to work with clients who want to start a business. The following steps in the process are discussed: (1) the individual expresses interest in self-employment; (2) counselor and individual discuss advantage and disadvantages of self-employment; (3) individual completes self-employment assessment; (4) sources for training, education, and preparation for self-employment are identified; (5) individual successfully completes services, training, or education; (6) continued interest is determined; (7) individual and counselor work with consultants to develop plan, marketing, and funding strategies; (8) counselor and individual evaluate all business plan drafts; (9) business plan is complete; (10) agency re-evaluates the individual and the proposed business plan; (11) agency establishes funding parameters; (12) plan is submitted to potential funders for start-up funds; (13) agency funding is finalized and business opens; (14) agency assist the business owner with developing a support system; (15) close the case; and (16) both the business owner and the agency conduct an evaluation.

Ware, J. E., Jr. (2003) Conceptualization and measurement of health-related quality of life: Comments on an evolving field. Archives of Physical Medicine and Rehabilitation, 84(4), Suppl 2. NARIC Accession Number: J45694. Project Number(s): H133B990005.
Abstract: Author presents his personal views on developments in the field of functional health assessment and their implications. Four topics of strategic importance are addressed: (1) a new formulation of the structure of health status, (2) applications of item response theory, (3) computerized dynamic health assessment, and (4) standardization and intellectual property.

Roth, E. J., Lovell, L. (2003) Seven-year trends in stroke rehabilitation: Patient characteristics, medical complications, and functional outcomes. Topics in Stroke Rehabilitation, 9(4), 1-9. NARIC Accession Number: J45789. Project Number(s): H133B980021.
Abstract: Study evaluated changes in patient profiles and outcomes of patients in a stroke rehabilitation center over a 7-year period. Trends in patient demographics, stroke characteristics, medical complications, rehabilitation hospital length of stay, and functional outcomes were examined from 1994 through 2000. Analysis revealed that while demographic variables, stroke severity, and most stroke characteristics remained relatively stable, disability levels at admission and discharge decreased and frequencies of both medical complications and medical tube usage increased over the study period.

Frank, J. J. (2003) The impact of the Americans with Disabilities Act (ADA) on the employment of individuals who are blind or have severe visual impairments: Part 1: Elements of the ADA accommodation request process. NARIC Accession Number: O14680. Project Number(s): H133B010101.
Abstract: Reports findings from study that evaluated the request for accommodation process provided under the Americans with Disabilities Act (ADA) by people who are blind or have severe visual impairments. Interviews were conducted with people with disabilities, rehabilitation professionals, and recruiters for large national employers. Results indicated that major areas of concern with the ADA accommodation process are: resistance by employers, refusals to discuss or provide accommodation, the failure of the enforcement process, technical difficulties with assistive technology, and the lack of knowledge about the process.

Panacek, L. J., Dunlap, G. (2003) The social lives of children with emotional and behavioral disorders in self-contained classrooms: A descriptive analysis. Exceptional Children, 69(3), 333-348. NARIC Accession Number: J45191. Project Number(s): H133B980005.
Abstract: Study compares the social lives of children with emotional and behavioral disorders (E/BD) in self-contained classrooms to that of a matched group of same-age typical children from general education classrooms. Interviews were conducted with 14 children with E/BD and 14 typical peers to better understand (1) their opportunities for engaging in normal social interaction during the school day, (2) the nature of their social networks, and (3) how their experiences differed across school, home, and community settings. Results indicated that children with E/BD had little opportunity to engage in integrated school activities and their social networks included mainly adults and children affiliated with special education. However, the social networks of the same children at home and in their communities were similar to the networks of the general education children. Children with E/BD identified their important friends as being from their home network, whereas the general education children’s important friends came from school.