Collaboration Between Medical Rehabilitation Programs and Independent Living Centers in Facilitating Independent Living By Persons With Recently Incurred Spinal Cord Injury

By Margaret A. Nosek, PhD; C. Don Rossi, MS

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

During the period immediately after discharge from a medical rehabilitation program, health maintenance and independent living skills taught during hospitalization must be put into practice, and adjustment problems must be resolved that could not be prepared for adequately during hospitalization. Yet knowledgeable assistance is difficult to obtain on a timely, affordable basis during the post-discharge period. Independent living centers (ILCs) can provide vital services in facilitating transition of the individual with a recently incurred spinal cord injury (SCI) from hospital-based rehabilitation to an independent, productive, life in the community. Differences in program philosophy and style of service delivery, however, may make it difficult for medical rehabilitation programs and ILCs to work together effectively. This project is designed to develop, implement, and systematically evaluate a cooperative re-entry program involving a medical rehabilitation program and an ILC for facilitating the post-hospitalization life adjustment of persons with recently incurred, ventilator-dependent SCI.

Progress

Thirty subjects with quadriplegia have been selected from a database of ventilator users kept at the Institute for Rehabilitation and Research (TIRR), while another 30 who do not use ventilators have been selected from a SCI registry to serve as matched controls. They are being interviewed about issues they faced re-entering the community after hospitalization for rehabilitation and the extent to which the Houston ILC assisted them with that process. Data from the interviews will be analyzed and the results will be used to create a coordinated, comprehensive discharge program between TIRR and the Houston ILC, incorporating factors that persons with SCI found to be the most useful in re-entering the community with severe disability.

Future Plans

Measures of community integration will be examined quantitatively from three databases: 1) ventilator user database; 2) national database of 450 women with disabilities, containing 120 women with SCI and 500 controls without disability; and 3) database of people with severe disabilities who use at least 1 hour of personal assistance daily. Variables to be examined include disability type, severity, and age at onset; assistive devices and equipment used; productivity; personal assistance services; living arrangement; mobility in the community and social integration, as measured by the CHART; marital status and romantic relationships; health status and maintenance; and life satisfaction. Using analysis of variance, extent of community integration will be compared among three groups: 1) persons with SCI; 2) persons with other disabilities such as cerebral palsy, polio, and muscular dystrophy; and 3) persons with no disability.

Recent Publications from this Research

Personal assistance services: the hub of the policy wheel for community integration of people with severe disabilities. Nosek MA, Howland CA. Policy Stud J 1994:21(4):789-800.

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