Research brief

Self-Managed Versus
Agency-Provided Personal Assistance Care
for Individuals With High Level Tetraplegia

by Jane Mattson Prince, PhD; M. Scott Manley, EdD; Gale G. Whiteneck, PhD, 1995

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Abstract

Mattson Prince J, Manley MS, Whiteneck GG.
Self-managed versus agency-provided assistance care for individuals with high level tetraplegia. Arch Phys Med Rehabil 1995; 76:919-23.

Objective

To determine whether a finite population, with severe physical disability, had better perceived quality of life, health status, and lower cost depending on whether they used agencies for their caregivers or hired, trained, and reimbursed their caregivers, independently.

Design and Setting

A survey, including demographics and portions of the Rand-36, LSI-A, PASI, PIP and CHART. The interviews were completed by telephone, by the leading author.

Participants

Seventy one persons who had sustained spinal cord lesions between C1 and C4. All were at least one year postinjury and had received rehabilitation at a local hospital in Engelwood, Colorado. Ten additional persons came from the leading author's case management caseload or from a Boston rehabilitation center. They were interviewed in person for pretesting.

Main Outcome Measures

Chi square, t tests, and multiple regression analysis, which controlled for potentially confounding group differences. Individuals were placed in two cohorts. Twenty-nine persons received primarily agency provided care and 42 individuals used personal care attendants.

Results

The self-managed group showed significantly better health outcomes, with fewer rehospitalizations and diminished preventable complications. They also experienced greater life satisfaction and significantly lower costs. Those in the self-managed care group had significantly higher composite scores on Rand-36, indicating higher perception of recent health status. Significant differences in mean PIP scores indicated that members of the self-managed care cohort perceived greater control over day-to-day lives. PASI scores showed that persons in this cohort had greater satisfaction with their caregivers and costs. Cost benefit analysis showed appreciable lowering of costs in the self-managed care group.

Conclusions

The self-managed care group had many more hours of paid attendant care, whereas the agency provider group had almost equal amounts of care from paid and unpaid providers. Persons using self-managed care reported having fewer medical problems, fewer hospitalizations and better perception of health. Participants declared greater satisfaction in having a choice of caregivers. Persons who were self-managing their care spent less money and used more hours of paid care. The financial burden borne both by families and friends were diminished by the persons managing their care individually.

Discussion

Survivors of high level spinal cord injuries who used self-managed care, typically regarded as a nonmedical care model, do not report more medical problems, longer or more frequent hospitalizations, or a poorer perception of their health. Their life satisfaction was no worse and the costs of the care they needed to maintain themselves at home were no higher than those whose care was provided by health care agencies. Indeed, on all of these variables, they fared better than their counterparts whose care was provided by agencies.

The significance of these findings must be tempered by the study's limitations, particularly its limited size, its non population-based non randomly assigned sample, and the possibility that other unidentified factors, both within and beyond the subjects' control, might either have preselected them for one care group or enabled them to move to a seemingly more desirable group. Nonetheless, the conclusion that there is value in offering care users choice and control remains clear. Indeed, most study participants declared great satisfaction with having a choice of caregivers; those who did not have that choice repeatedly mentioned a desire for control. The longer a person has been living in the community, the more he or she gravitated toward nonagency care. Many of those in this study, on their own, had convinced their payors, both governmental and private, to allow them to hire and manage their own care givers. In fact, 91% of those who had reported changing from the agency-provided to the self-managed model indicated they had done so because of dissatisfaction with the first model.

Perhaps most important, members of this sample who managed their own caregivers spent less money on their home care, despite the fact that they used more hours of paid care and fewer hours of unpaid or volunteer care each day. Consequently, two potential burdens were lessened, the financial burden borne by both the individual and society, and the care-providing and emotional burden borne by families and friends.

For a nation facing major reform if its health care systems, the implications of findings like these is significant. Cost containment and self-managed care are not mutually exclusive.

©1995 by the American Congress of Rehabilitation Medicine and
the American Academy of Physical Medicine and Rehabilitation