The Independent Living Research Utilization (ILRU) program at TIRR Memorial Hermann has been the primary provider of technical assistance and training for the independent living field for well over three decades. More recently, over the past 15 years, ILRU has become an important resource to a larger group of organizations and states engaged in self directed, community based services. In all cases, the overarching objective has been to further a growing movement of peer based community programs designed to be highly responsive to the needs of constituents.
Centers for Independent Living (CILs) achieve this constituent responsiveness by ensuring that those who participate in CIL programs are directly engaged in developing the individualized plans that guide their efforts to remain in or transition to the community. Because centers are peer based – meaning their boards, managers and staffs are comprised primarily of individuals with disabilities – they are more naturally in tune with the values and perspectives of those they serve. People with disabilities set the policies, oversee the operations and staff the organizations. These centers are characterized as being “consumer controlled."
Other programs operate with lesser degrees of control on the part of the individual receiving services. A growing number of home and community based services are provided through “participant directed” programs where there is an intentional effort to allow participants to guide the services they receive, up to and including budgetary authority – making decisions about how service funds are spent. Few participant directed programs have consumer controlled boards or staffs. Yet another group of programs are described as “person centered.” The teams and individuals who are involved in providing these services work to be sensitive to the needs and wishes of the individual, although those served do not experience an authentic degree of control.
ILRU was founded in 1977 by Lex Frieden and others to foster the highest level of participant involvement and consumer control, with a strong belief in the value of this approach. This emphasis on independence was entirely consistent with the return to community philosophy practiced by the founders of TIRR Memorial Hermann. Over time, research, often conducted or supported by ILRU, has established a strong evidence base demonstrating the efficacy of individuals living in the community – instead of in institutions such as nursing homes – and being in control to maintain or improve the quality of their lives.
The scope and breadth of technical assistance ILRU is called to provide has expanded well beyond service provision into the management, operation and transformation of traditional community programs into organizations that explore and “live out” high degrees of individual control, and that take a peer based, advocacy oriented approach to the work they do. This almost always involves a dramatic change in perceptions and provides new values and insights as organizations take on this new service approach. ILRU often assists organizations as they challenge a dominant culture within the traditional service delivery arena in which they operate. A timely example of this work is the training and consulting work ILRU is now doing with Centers for Independent Living as they begin to partner with Aging and Disability Resource Centers (ADRCs), a program of the Administration on Community Living. As a result of the work of many individual centers and the support ILRU has provided to many of those centers, ADRCs are beginning to explore greater degrees of individual control and to take on systemic change with their stakeholder partners and in broader society.
In the decades to come, the transition to community living and consumer direction will continue. This transition is driven by a variety of forces, including efficacy and cost efficiency. Along with a research role, ILRU will carry on its work cultivating and fostering consumer direction through its wide ranging technical assistance work.
Richard Petty is program director at Independent Living Research Utilization (ILRU) at TIRR Memorial Hermann. Petty directs the ILRU New Community Opportunities Center, a national center that advances community programs for transition from nursing facilities to the community for persons of all ages, and youth transition from school to community. He directs the CIL NET and SILC NET, the two national projects that provide training and technical assistance on programming and management to centers for independent living and statewide independent living councils, organizations which foster community independence for people with disabilities.