Through the Years
1980 to 1985: While experiencing initial growing pains, at the end of the second year five research projects had been completed, work was in progress on six other research projects, and eight new projects were being designed. Our initial concentration included research projects examining development of independence in adults with disabilities, the influence of family on IL, survival skills for women with disabilities, involvement of people with disabilities in ILC operation, development of state IL policies, peer counseling programs, survey of technology in IL, and support groups.
Among our first projects was the development of efficient and effective methods for evaluating independent living center programs and services. These “Standards for Independent Living Centers,” a set of minimum compliance indicators, were used by the Rehabilitation Services Administration and are still in use today. Providing research-based materials for independent living centers has been a continual practice for the RTC/IL.
Some of our many projects for this target audience include an ILC orientation manual; resource manual to help ILCs establish a funding base of local, nongovernmental support; a directory describing peer counseling services; and survey of ILCs to identifying problems in serving underserved populations. We have also maintained an ILC directory, developed an assessment of community economic impact fostered by ILCs, and provided centers with extensive technical assistance.
Another stand-out project from the early years resulted from the study of media portrayal of people with disabilities. The end product, Guidelines for Reporting and Writing About People with Disabilities, is in its sixth edition and has been adopted by over 40 national disability organizations as well as the American Association for Advancement of Science, National Rehabilitation Association, Journal of the Association for Persons with Severe Handicaps, Rehabilitation Counseling Bulletin, Associated Press Stylebook, and American Psychological Association Publications Manual.
1985-1990: A new core RRTC funding grant concentrated research in monitoring the state of IL, facilitating consumer self-help, and improving IL services. Because of the RTC/IL location, the State of Kansas was often a research beneficiary. For example, Concerns Report data resulted in the purchase of a transportation van and computer training program in Douglas County, accessible housing renovation in Shawnee County, a support group for people with disabilities in their families in Harvey and Linn counties, and a utility loan program for residents with disabilities in Wyandotte and Johnson County, and Cass, Clay, Jackson, and Platte counties in Missouri.
RTC/IL researchers also collaborated with the Kansas Advisory Committee for the Employment of the Handicapped in preparing a statewide survey of the concerns of over 1,400 disabled citizens in Kansas to help set an agenda for executive and legislative activity for state agencies and advocacy groups serving the disabled. KACEH also used RTCIL data to develop a state law on public building accessibility and mandate that public meetings of executive agencies be held in accessible places.
In 1988, four new research projects were added to investigate the impact of improved disability housing options, increase utilization of accessible housing by people with disabilities, build mentor relationships, and create and maintain an effective consumer volunteer program in ILCs. Seven new training projects and two new materials development projects also were added and completed, including The Personal Attendant Care Management Training Model, which increased the capacity of consumers to manage attendants, thus reducing management problems and the chances of institutionalization. Another training goal met was the identification of applied strategies that deterred unlawful parking in handicapped-designated parking spaces.
By the end of the decade, we were offering more than 150 products in our catalog and had filled more than 245,000 requests for materials. More than two thousand people received our quarterly newsletter highlighting RTC/IL research, and we averaged about 40 training events a year. In 1989 alone, RTC/IL staff logged over 1,100 hours of technical assistance contacts provided to over 4,050 individuals and organizations.
We also moved from our offices in Haworth Hall to the new Dole Human Development Center building next door. And, it was through the efforts of Glen White that the Dole Center installed access ramps for people with disabilities. He had discovered that the plans for the newly constructed Dole Center did not include curb cuts, a violation of The Americans with Disabilities Act that requires wheelchair accessibility for public buildings, and ensured their provision.
1990-1995: We made a major effort in 1990 to write the RRTC proposal for the next five years. It was one of the best, if the not the best, ever written at the RTC/IL. However, the best grants don’t always win. We contemplated and rejected a challenge in which we might have won the battle but not the war in the long run. With the loss of major funding, we had to cut back on everything, including the hardest: letting valued staff go.
Our strategy was to maintain a core staff of individuals who could rebuild funding and maintain a minimum level of research and service. With the survival of the RTCIL at stake, Mark Mathews, Fabricio Balcazar, Glen White, and myself all wrote grants that were funded for more than what would have resulted from a new core RRTC grant. The three grants included exemplary IL practices in rural areas (Mathews), consumer recruitment of mentors (Balcazar and White), and consumer control (Budde).
Also during the early 1990s, Schiefelbusch was recalled from retirement to direct the Lawrence Campus Gerontology Center. We talked with him about the potential of IL in the gerontology field; then, fortuitously, Paul Kennedy, the innovative director of the Topeka Veteran’s Administration hospital, contacted us about conducting research at the hospital. The RTC/IL and Schiefelbusch accepted his offer to both work half-time at his hospital and soon found the VA was based on a traditional medical model managed with a somewhat military management model.
With Kennedy, we wrote and collaborated on a number of grants such as the Gerontology Research Education Center (GREC) that involved the Leavenworth, Kansas City, and Topeka hospitals and a study of policies and procedures that facilitate discharge placement in less costly and more IL alternatives. In addition, we conducted a consumer conference where veterans were enabled to exchange information with staff and voice concerns—just like we did in IL; however, this met with limited success. Our greatest successes came in the form of planting IL philosophies and practices within services. We also met a number of consultants such as Rue Cromwell and graduate students who would play key roles in our next NIDRR RRTC grant.
During the last few months at the VA, we decided to respond to the RFP on a RRTC for underserved populations and IL. One of our first efforts was to define the underserved population, which we determined were three key populations who had brain injury, psychiatric disability, or mental retardation (now called “intellectual disability”). Mathews took responsibility for the head injury core, Cromwell for the psychiatric disability area, and I for the intellectual disability area. With the help of Pam Willits and her staff, we edited, refined, produced, and forwarded the grant to NIDRR. Our efforts were rewarded: The application was successful and was funded to begin in October 1993.
The new Research and Training Center on Independent Living for Underserved Populations was designed to systematically address the many issues that would enable individuals from underserved populations to have opportunities to live independently. To achieve the mission and meet the NIDRR priorities for the underserved populations, six research and eight training projects were expedited by consumer-empowered teams that included consumer-consultants, advocate leaders, and IL experts in addition to researchers, trainers, and media personnel. Most products were developed around the concept that IL services do not need to be changed but rather augmented with accommodations for consumers from the underserved populations. Research projects included an IL needs assessment for underserved populations, assistive technology skills training for consumers with psychiatric disabilities, service accommodation for consumers with cognitive and intellectual disabilities, and facilitation of effective board skills for underserved IL populations.
1995-2000: In 1998, as we continued our research concentration on underserved disability populations, we began our Research Information for Independent Living project. With the Independent Living Research Utilization (ILRU) Program of TIRR, we worked to improve access and use of research information by people with disabilities and other non-researcher stakeholders involved in the independent living, disability rights, and rehabilitation fields. Approaches used by RIIL include Webcasts, listservs, a review guide, and the interactive Internet database (www.getriil.org) that contains two thousand research summaries on key IL topics.
2000 -2005: Starting in January of 2001, with NIDRR funding, we built on previous research and expanded to include a new Rehabilitation Research and Training Center on Full Participation in Independent Living with a five year, $2.5 million, NIDRR grant. Our initial research focused on learning how to get people with disabilities to participate fully in society, determining at what level they do participate, and identifying groups that may be underserved. The four core areas of research for the center have been increasing knowledge about disability; community participation and wellness; cultural independent living accommodations, and personal and systems advocacy with results readily available on our website. Glen White, principal investigator for the new center, led a research team of co-investigators that included Michael Fox, David Gray, Daryl Mellard, Katherine Froehlich Grobe, Tom Seekins, Fabricio Balcazar, and myself. White also assumed a new leadership in 2002 when be became director of the RTC/IL as I began a partial retirement and assumed the title of founder and past director.
Our research was directed toward greater community participation (e.g., a qualitative interview study regarding barriers to full participation in IL), the changing universe of disability (e.g., a population-based analyses to identify and to better understand emerging populations of persons with disabilities, such as those with Chronic Fatigue Syndrome and violence-induced neurological impairments); personal and systems advocacy (e.g., evaluation of cost-effective advocacy methods, evaluation of a Tribal Disability Concerns Report Method for community disability planning and building tribal disability action agendas, community participation and wellness (e.g., identification of exemplary ways to use peer networks and communication channels to enhance and maintain health and wellness for people with disabilities).
One full participation project, Self-Advocacy Training for Students with Disabilities, was completed by Yen Vo, a resident of Vietnam, who received a Ford Foundation International Fellowship in 2001 and came to the university to obtain her master’s degree. Vo, at the RTC/IL, researched a design for postsecondary students to effectively lobby for better accommodations at the University of Kansas, Emporia State University, and Washburn University. Her work has been made into a manual and also is being made into an online class.
Another exciting research project funded by a $615,000, three-year grant from the Centers for Disease Control and Prevention through the Association of Teachers of Preventive Medicine in Washington, DC began in 2002. The research team, including Catherine “Cat” Rooney, project coordinator, of our “Nobody Left Behind” project, investigated 30 randomly selected U.S. counties, cities, parishes and boroughs where a natural or man-made disaster occurred between 1999 and 2004 to determine whether disaster plans and emergency response systems met the needs of people with mobility impairments.
Early results of the study were presented at the first Conference on Emergency Preparedness for People with Disabilities, supported by the U.S. Department of Homeland Security with the National Organization on Disability on Sept. 23 in Arlington, Virginia. Through our Web survey, too, we have heard of the many public buildings with inaccessible escape routes, the lack of accessible transportation after a disaster event, and other problems. Because there is virtually no empirical data on the safe and efficient evacuation of persons with disabilities in disaster planning, we hope this study will lead to a national model that can prevent death and injury for this population in future disaster situations.