Founding of the RTC/IL
The Research and Training Center on Independent Living (RTC/IL) with its more than 30-year history of productive research, comprehensive training, and innovative dissemination of knowledge, began with the quest to provide a home for a 21-year-old woman with quadriplegia. At that time, a planning group formed, including Roger Williams, Gary Condra, Cal Broten, Judy Bachelder, Franklin Shontz, and myself, unaware of an independent living (IL) model as we know it today. We struggled and failed to come up with a solution to our quest. Then Dick Royce, a graduate student working with us, discovered that the Department of Education under the Rehabilitation Services Administration had established three demonstration projects for independent living centers (ILC) in Houston, Boston, and Berkeley .
I decided to visit the ILC in Berkeley and, to my excitement, found it was an effective storefront operation primarily operated by individuals with severe disabilities. Their model was one that I believed would make a major impact on the world—and it has. This model contained three interrelated components. First, the services were what I later termed “undependency-creating” services. The services were all designed to help individuals become independent rather than dependent. For example, individuals were enabled to obtain their own home through accommodations, supports, and entitled benefits rather than being placed in a group home.
Second, the environment was viewed as the first obstruction to independence. At the time, the individual with the disability was rated by what the person could and could not do rather than the restriction of the environment. For example, an individual might be rated as not being eligible for educational benefits because they could not attend classes in a wheelchair. The ILC service would be one of advocating for a ramp or elevator that would make educational access possible.
The third, and what I believe to be the most important, was consumer control. It was based on the concept that individuals with disabilities were to be treated as consumers of services. In other words, they could select services and participate in the process. Consumer control is also based on the concept that individuals with disabilities controlled their own lives. Early research reviews illustrated that when individuals cannot control their lives they become resentful, devalue what others force them to participate in, and even give up control after constantly being forced to make decisions that they do not value. The cornerstone and success of our country is individual freedom and independence; individuals with disabilities have the same rights and are encouraged and sometimes forced to control their own destiny.
Back in Lawrence, I reported my experience to the enthused planning group. We then created the model for what we decided to call Independence, Incorporated, which was launched with concession stand profits and Kansas Rehabilitation Services funding. That same year, in 1979, a Request for Proposal for a Rehabilitation Research and Training Center (RRTC) on IL became available through the National Institute on Handicapped Research, which later became the National Institute on Disability and Rehabilitation Research (NIDRR). Howard Moses, who had been recently appointed to the new, small Independent Living Department of Kansas Rehabilitation Services and one of the nicest men that I have ever met, and I decided to take our growing IL knowledge and University Affiliated Program (UAP) track record working with grassroots organizations and community innovation, to apply for the RRTC grant. To our favor, 10 additional points were to be awarded to any applicant from Federal Region VII, including Kansas, because it was the only federal region that did not have a RRTC.
The grant challenged us because we had been using a UAP model that was less concerned with research and more concerned with innovation and training. Fortunately, the emerging IL field, too, placed a high value on innovation and training. To determine needs, we listened to the problems that individuals with disabilities had with services and the environment. This policy of including the intended recipients of our research efforts and including them on our advisory boards would later be a NIDDR-mandated policy termed “Participatory Action Research,” a mainstay at our Center before it was even a center and integral to our long-term success.
As we wrote the RRTC application focusing on independent living foundations and services as well as self-help, we recruited researchers and staff and matched their interests with needs. We then worked with this staff nucleus, including Neil Salkind, Ann Turnbull, and Gary Clark to develop individual research and training projects overseen by Salkind as research director, Clark and Moses as training coordinators, and myself as Center director. As we recognized the needs of the growing disability population, we developed the guiding statement of: Through research and training, improving services, enhancing the community environment, and facilitating consumer control, persons with disabilities are able to live independently. Our target audiences were: 1) individuals with disabilities, 2) families and other social support groups of disabled individuals, 3) independent living service providers, 4) policy makers in rehabilitation and independent living, 5) rehabilitation and other professionals, and professional trainees in the university community, and 6) the general public, both locally and nationally.
When the peer reviews were completed, we scored highest when the 10 extra points were added, topping even the University of Nebraska and University of Missouri, both stunned that Kansas placed higher than their established rehabilitation centers. They and another entity contacted their Congressional delegations to challenge the decision, prompting site visits at each location to gain additional information. After our site visit, Kansas , of course, was awarded the grant, and the first Rehabilitation Research and Training Center on Independent Living was established within the Bureau of Child Research. And, through the advice and assistance of Edward Meyen, we requested that the Board of Regents grant the new RTCIL center status, which meant that the RTCIL would be a long-term entity that would conduct IL research at the University of Kansas.