The Evolution of Independent Living Programs:
A Longitudinal Study

By Margaret A. Nosek, PhD; Gail Chanpong, MS; Carol A. Howland, BA; Laurel Richards, BA; Laurie Gerken Redd

The ILRU Research and Training Center on Independent Living at The Institute for Rehabilitation and Research and the Department of Physical Medicine and Rehabilitation, Baylor College of Medicine, Houston, TX 77030

Sponsor: National Institute on Disability and Rehabilitation Research, Washington, DC 20202

Purpose

The purpose of this project is to maintain a database on the status of independent living programs (ILPs) nationally, and to identify trends in the development of ILPs, the emergence of issues encountered in the delivery of their services, and changes in the characteristics of consumers of these services.

Progress

Profiles of each program responding to a full-length survey have been published in the ILRU Registry of TLPs. In 1994, a revised and updated survey instrument was mailed to 296 independent living centers and 62 independent living programs listed in the ILRU Directory of ILPs. Information was solicited concerning populations served, services provided, characteristics of persons providing services, methods by which services are provided and programs administered, sources and amounts of funding, and relationships between programs and their communities. Responses from 197 programs (67 percent response rate) were received and are currently undergoing data analysis.

Results

Preliminary results are available regarding funding. ILC survey respondents reported that 55 percent received federal funds, 72 percent received state funds, 43 percent received local government support, 35 percent reported receiving funds from foundations, 74 percent received private donations, and 40 percent have for-profit business income. The 1994 survey revealed a dramatic decrease in federal funding available compared to 1992 funding. Between 1992 and 1994, there was an overall 42 percent decrease in federal, a 13 percent decrease in state funding, and a 20 percent decrease in funding from United Way and not-for-profit fees for service, with no substantial increase in foundation or private sources of funding. However, there was a substantial increase in income from for-profit business ventures.

Future Plans

The Directory of ILPs is updated and reissued approximately five times per year. ILRU staff will continue to update the Directory and respond to specific inquiries with individualized data runs and reports. Analysis will continue on the ILRU National Database on ILPs, with trends published as they emerge. Of particular interest is changes in funding patterns, which will be compared to results from the l988 and 1992 surveys.

© ILRU Research and Training Center on Independent Living