Evaluation of a Medical Rehabilitation and Independent Living Program for Persons with Spinal Cord Injury
Tate, Denise G., Maynard, Frederick, Forchheimer, Martin, The Journal of Rehabilitation
Independence in a medical setting entitles patients to make decisions about their lives. It allows them the right to make choices. Although much has been said about independence in relation to rehabilitation, most medical rehabilitation programs both fail to encourage independence and to prepare persons with disabilities to develop their maximum potential for productivity, quality of life, and social participation after hospitalization (Purtilo, 1988; Nosek, Parker and Larsen, 1987).
Typically, once the medical team determines that patients have made sufficient gains to warrant discharge, they are suddenly awarded with the control over their health care and other life decisions. However, since the patients' initial rehabilitation has been provided within a system that fosters dependency and emphasizes their sick role, these persons often find themselves unprepared to manage their fives independently after discharge.
The purpose of this article is to describe the evaluation of a collaborative medical rehabilitation and independent living (IL) program that was designed for persons with new traumatic spinal cord injury (SCI) at the University of Nectigan Model SCI Care System. Sponsored by a grant from the National Institute on Disability and Rehabilitation Research, the "Hospital to Community" program prepares SCI persons for community reintegration and for acquiring more control over their lives after the sudden onset of a new disability.
The focus of traditional medical rehabilitation has been on achieving maximal independence in activities of daily living by remediating the patient's physical limitations (DeJong, 1981). In contrast, the consumer-based IL paradigm offers to persons with disability freedom from unwanted and unnecessary physical and psychological dependence. It offers options and encourages self-sufficiency and self-determination in daily routines, social identity and life choices. The locus of the problem according to this paradigm is not in the individual but rather the surrounding environment, including the rehabilitation process itself. To cope with environmental barriers, persons with disability must shed their patient roles for consumer roles. Advocacy, peer counseling, self-help, consumer control, and barrier removal are the trademarks of the IL paradigm (DeJong, 1983). The IL and the medical rehabilitation paradigms can complement one another and recognition of the potential benefit of collaborative efforts is growing (Fuhrer, 1990). Both paradigms afford the client the opportunity to benefit from their specific positive aspects.
As described in a comprehensive program manual, staff for the "Hospital to Community" program included a Community-based IL specialist from the AACIL, trained Peer Resource Consultants (PRCs) from the community, and a Hospital-based IL specialist who had a background in rehabilitation counseling or occupational therapy and who possessed unique knowledge about independent living issues (Rasmussen, Tate, Casoglos, Wolf, Maynard & Magyar, 1989). The program entailed 60-70 hours of activities and occurred during six to eight weeks of the patient's initial rehabilitation hospitalization.
Being multi-modal in design, the program consists of (a) educational classes that were taught by AACIL staff and rehabilitation counselors about employment housing, personal care attendant management, leisure and recreation, advocacy and benefits; (b) group support sessions that were jointly led by the Hospital IL specialist and the Community-based specialist on topics such as adjustment to disability, problem solving skills and sexuality; (c) community trips selected and arranged by the patient; (d) peer resource consultant meetings; (e) and patients' attendance at their own hospital chart rounds meetings.
This study was designed to test the hypotheses that by discharge from the hospital, SCI patients who were program participants would: gain knowledge about their disabilities and about independent living; and hold more positive attitudes towards persons with disabilities. …