Identifying the Unmet Independent Living Needs of Persons with Spinal Cord Injury

Abstract

The comprehensive needs of persons with spinal cord injury (SCI) include not only health care needs, but many environmental and societal needs following discharge from a rehabilitation program. Regardless of the quality of inpatient care many of these needs cannot be met through inpatient rehabilitation (Pollack, Zugar, & Walsh, 1992). There are a couple of reasons for this. One reason is that independent living (IL) services provided inpatient to assist people with the difficulties of living in the community with a disability do not necessarily generalize to the 'real-world'. Independent living needs in the 'real-world' are more complicated than can be experienced in a protected hospital environment. For example, while hospitalized, patients can be given general information about what attendant care services are and how attendants should be supervised, because of the hospital context, this information can only be provided in an abstract manner. Specifics, such as managing attendants and resolving disputes with them cannot be done prior to community re-entry. A second reason why all independent living needs cannot be met during inpatient rehabilitation is that medical professionals and insurance providers tend to focus narrowly on maximizing the quality of medical outcomes, with insufficient appreciation for the context in which those with SCI will have to function subsequent to their discharges. In response to this problem, an IL movement has arisen (Nosek & Fuhrer, 1992). The IL movement focuses on empowering persons with disabilities to maximize their autonomy. Independent living services frequently include information and referral concerning personal attendants and housing; skills training dealing with transportation and finances; peer counseling; advocacy aimed at obtaining necessary support services within the community; and information concerning equipment repair and recreational activities (Fuhrer, Rossi, Gerken, Nosek, & Richards, 1990). Historically these services have been provided by Centers of Independent Living (CILs). With the growth of CIL programs, many have assumed that the IL needs of persons with SCI are now being adequately met. Recently this assumption has come into question. A study by Gerhart, Johnson, and Whiteneck (1992) found that frequently the needs of persons continue to be unmet. They found that unmet needs were disproportionately prevalent among those with minimal impairment. Gerhart et al. (1992) identified the traditional rehabilitation system, which focuses almost exclusively on minimizing the effects of disability and impairment without regard to patients' social and environmental contexts, as a major impediment to persons with less severe impairments. Other factors identified as adversely affecting the rehabilitation services provided to this subgroup included limited interaction with rehabilitation providers and short lengths of stay. Gerhart et al. (1992) underscore the importance of independent living services for persons with SCI: Not only are persons with minimal deficits likely to receive relatively little in the way of therapeutic intervention, their financial and vocational needs are not addressed. These are necessary to ensure such positive outcomes as successful adjustment, restoration of self esteem, and resumption of previous family, social, and vocational roles. Clearly this group of individuals is in need of support. (p. 285) A study by Pollack, Zugar & Walsh (1992) had similar findings. They found that fundamental needs of persons with SCI, particularly those relating to community reintegration, were unmet. Their survey of persons with SCI and hospital staff reports indicated that the circumstances encountered after discharge are much more complicated than those found in hospitals' protected environments. Means and Bolton (1994) approached the issue of unmet needs differently. They surveyed directors of CILs about what their staffs' felt were the unmet needs of their clients. …