RehabWire Volume 3 Number 7, Winter 2001
RehabWire for November welcomes NIDRR’s new director, Steven Tingus, with an issue devoted to independent living and community integration.
NIDRR Projects: Research in the New Millennium.
NIDRR Program Directory chapter on projects relating to independent living and community integration: http://www.naric.com/research/pd/priority.cfm
Here are some of the newest projects:
Role Models for Youth with Disabilities: Career Exploration for Youth in Transition, InfoUse (ED-01-CO-0127) led by Lita Jans, PhD. Judith Fein, Project Officer.
Abstract: In this project InfoUse develops a series of multimedia products featuring adults with disabilities as role models for transition-age students with disabilities. The products, developed for students, their parents, and professionals who work with them, depict adult role models, including people with different disabilities, from different ethnic groups, who are working in a range of careers that require a variety of post-secondary education and vocational preparation.
Find out more at: http://www.infouse.com
NutraNet: An Internet-Based, Self-Directed Multimedia Software System for Nutritional Education, Planning, and Implementation for Individuals with Mental Retardation, AbleLink Technologies, Inc. (ED-01-CO-0126) led by Steven E. Stock. Kristi E. Wilson, PhD, Project Officer.
Abstract: This project develops a set of multimedia software modules to provide opportunities for greater independence and self-direction in nutrition planning, grocery shopping, and meal preparation for individuals with mental retardation and other significant cognitive disabilities.
Find out more at: http://www.ablelinktech.com
Moving Out of the Nursing Home and to the Community: Examining and Effecting Social Change, University of Illinois/Chicago (H133G010033) led by Joy Hammel. Bonnie Gracer, Project Officer.
Abstract: This project develops, evaluates, and disseminates a social action and networking program for people with disabilities who are transitioning from nursing homes to communities of their choice. This new social action program, based on disability studies research and disability narratives, targets four major unmet needs for: (1) sustained networking with peers, mentors, and activists who have disabilities and can share experiences and strategies; (2) joining meaningful social reference groups, especially those in which disability identity, pride, community membership, and collective activism are valued and positively modeled; (3) using information technologies, such as computers and the Internet, to gain knowledge, socialize, and network with identified communities of choice; and (4) gaining access to consultative services and resources to access these technologies and the community environment over time.
Evaluating Independent Living Outcomes for Blind and Visually Impaired Older People: Development of a Nationally Standardized Minimum Dataset (NSMD), American Foundation for the Blind (H133G010183) led by Corinne Kirchner, PhD and Alberta L. Orr, MSW. Bonnie Gracer, Project Officer.
Abstract: This project develops and pilot tests a Nationally Standardized Minimum Dataset (NSMD), through which research can be conducted on the outcomes of services for older persons with visual impairments. The NSMD is piloted in several agencies throughout the country and includes: (1) pre-service consumer data, (2) a post-service consumer profile, (3) a functional outcomes assessment, and (4) a consumer satisfaction and perceived outcome survey.
Find out more at: http://www.afb.org
Getting A Life: Research on Individual and Person-Centered Planning Processes in Oregon, University of Oregon (H133G010167) led by Richard Albin, PhD. Bonnie Gracer, Project Officer.
Abstract: This project researches the relative merits of forms of Person-Centered Planning (PCP), including the Individualized Support or Service Plan (ISP) system, Essential Lifestyle Planning (ELP), and others. Activities include the following three studies: (1) surveying the features of individual planning systems used in Oregon at the start of the project and in Year 3 after large scale systems change efforts have occurred; (2) creating a causal-comparative 3-by-2 factorial group design, where study participants are assigned to groups based on whether they are experiencing a defined set of significant life challenges and the types of service planning they receive, with groups balanced or blocked based on demographic variables; (3) creating a multiple-baseline single subject design in which the outcomes of three service planning approaches (ISPs, ELPs, and PCP) are compared related to specific outcomes for six individuals who experience challenging behavior.
Other places to visit:
- RRTC on Independent Living: http://www.rtcil.org
- Research Information for Independent Living: http://www.getriil.org
- The Center on Human Policy: http://soeweb.syr.edu/thechp
- Through the Looking Glass: http://www.lookingglass.org
- RRTC on Full Participation in Independent Living: http://rtcfpil.org
- RRTC on Community Integration of Persons with Mental Retardation: http://rtc.umn.edu
- RRTC on Independent Living Management: http://www.wnyilp.org/RRTC/RRTC.html
- RRTC on Community Integration of Individuals with Traumatic Brain Injury: http://www.mssm.edu/tbinet
- Self-Determination Project at Oregon Health and Sciences University: http://cdrc.ohsu.edu/selfdetermination
New Research: Selections from REHABDATA.
Gerhart, K.A. (2001) Home alone I. Home alone II. Home alone you! PN/Paraplegia News, 55(3), 13-15. Craig Hospital. Accession Number: J41944.
Abstract: Article on ways for individuals with spinal cord injury (SCI) to decrease the risks that come with living alone. Topics include communication options such as cell phones and medical alarm systems, and emergency planning for leg-bag emptying, autonomic dysreflexia, falling out of your chair, and victimization.
Moore, J.E., Giesen, J.M., Weber, J.M., Crews, J.E. (2001) Functional outcomes reported by consumers of the independent living program for older individuals who are blind. Journal of Visual Impairment and Blindness, 95(7), 403-417. Rehabilitation Research and Training Center on Blindness and Low Vision, Mississippi State University. Accession Number: J42435.
Abstract: Study examining 940 older adults' perceptions of the services they received under the Independent Living Program for Older Individuals Who Are Blind (Title VII, Chapter 2 of the Rehabilitation Act of 1973, as amended). Significant differences were found in perceived outcomes based on participants' sex, age, living arrangements, and age at onset of visual impairment (blindness or low vision). Implications for rehabilitation policy and service delivery are discussed.
Malec, J.F. (2001) Impact of comprehensive day treatment on societal participation for persons with acquired brain injury. Archives of Physical Medicine and Rehabilitation, 82(7), 885-895. Mayo Medical Center. Accession Number: J42477.
Abstract: Study assessing outcomes of comprehensive day treatment (CDT), a milieu-oriented approach to postacute brain injury rehabilitation, and identifying outcome predictors. Outcome measures examined included measures of independent living status and vocational independence, the Mayo-Portland Adaptability Inventory (MPAI-22), and goal attainment scaling. Predictors examined included age, education, severity of initial injury, time since injury, and preadmission MPAI-22. Results indicate that CDT improves societal participation even among persons with long histories of limited participation after brain injury. Relations of predictors to outcomes were not sufficiently strong to support patient selection.
Wolman, C., Garwick, A., Kohrman, C., Blum, R. (2001) Parents' wishes and expectations for children with chronic conditions. Journal of Developmental and Physical Disabilities, 13(3), 261-277. University of Minnesota, Center for Children with Chronic Illness and Disability; Division of General Pediatrics and Adolescent Health; Medical School. Accession Number: J42677.
Abstract: Qualitative study investigating the wishes and expectations of parents for their children with chronic physical health conditions. Participants were parents of African American, Hispanic, and European American children. Results indicated that many parents' wishes were specifically related to the child's chronic condition, including wishes that the condition would not exist, would be cured, or would improve. Other wishes focused on the psychosocial well-being of the child, independent living skills, education, having a family, behavioral issues, and religion. All of the wishes were positive, but some of the expectations were negative. Expectations concerned the child's condition, the child's psychosocial well-being, independent living skills, education, and social concerns. Two types of chronic conditions, mental retardation and mobility impairments, affected the types of parents’ wishes. Differences among the three ethnic groups were noted in wishes regarding education and behavioral issues, as well as in parents' expectations about social problems.
Ravesloot, C., Ipsen, C., Seekins, T. (2001) Living Well could save $31 million annually. Rural Disability and Rehabilitation Preliminary Research Progress Report #7. Rehabilitation Research and Training Center on Rural Rehabilitation Services, University of Montana, http://ruralinstitute.umt.edu/rtcrural/ Accession Number: O14085.
Abstract: Preliminary study examining net economic benefits of Living Well, a health promotion workshop for persons with disabilities, and projecting net benefits to states, Medicare, and Medicaid if the Living Well program were made more widely available. Data are from 188 individuals who participated in one of 34 Living Well workshops at 9 Centers for Independent Living in eight states.
Conklin, N. (2001) Computer guts, ABCs and basic skills: Organizing a cross-disability computer users group. Readings in Independent Living. Rehabilitation Research and Training Center on Independent Living Center Management and Services, Independent Living Research Utilization at The Institute for Rehabilitation and Research (TIRR), http://www.ilru.org/ Accession Number: O14093.
Abstract: Paper describing a program of the Center for Independence in Grand Junction, Colorado, in which proficient computer users familiar with adaptations for people with disabilities provide lessons and support to beginners. Features of the program, evidence of program success, sources of funding, and replicability of the program by other independent living centers are discussed.
Holtz, J., Jones, M.A., Miller, K. (2001) Been there, done that: The mental health Peer Support Project. Readings in Independent Living. Rehabilitation Research and Training Center on Independent Living Center Management and Services, Independent Living Research Utilization at The Institute for Rehabilitation and Research (TIRR), http://www.ilru.org/ Accession Number: O14094.
Abstract: Paper describing a peer support project for persons with psychiatric disabilities at the Westside Center for Independent Living in Los Angeles. The paper describes planning and development of the project; features of the project, including training and internships; and outcomes, including evidence of program success.
Did You Know...?
ILRU Readings in Independent Living are available online?
Reports and bibliographies on a variety of topics are available for download at http://www.ilru.org/Publications/dateRead.html