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Two groups of individuals with high level tetraplegia (C1-4) were compared with respect to the model of personal care assistance used. The study was undertaken to determine whether a finite population with severe disability had differences in health status, costs and perceived quality of life, relative to whether they used agencies for their care, or hired, trained and reimbursed care givers independently. A survey, which included demographics as well as portions of RAND-36, LSI-A, PIP, PASI and CHART was used. Telephone interviews were held with 29 individuals who received their care through an agency and 42 who managed care independently. Chi square, 't'-tests, and multiple regression analysis were used to control for potentially confounding group differences. The self-managed group demonstrated significantly better health outcomes, with fewer re-hospitalizations for preventable complications. They experienced better life satisfaction and significantly lower costs. Although those who used an independent model of care-giving received significantly more hours of paid assistance, the average annual cost of care was significantly lower for each individual. In addition to reducing the financial burden on the individual and society, self-managed care seemed to diminish the emotional burden borne by these individuals.

A rational approach to long term care: comparing the independent living model with agency-based care for persons with high spinal cord injuries