Abstract

Evaluation of an Arkansas project found that the "direct funding approach" for purchasing supportive services improves satisfaction and unmet needs for both elderly and non-elderly groups. These findings were based on a trial featuring a new program, in one state and a brief follow-up period (9 months). Caution should be exercised in generalizing the findings. Further research is required to evaluate the impact of the direct funding approach on cost effectiveness, informal caregivers, and the experience of workers hired by consumers. Background: A number of jurisdictions in Canada and the US have incorporated "consumer-directed" or "direct funding" for consumers with disabilities to purchase their own supportive services in the belief that lack of control over basic, often intimate, assistance leads to dissatisfaction, unmet needs and diminished quality of life. However, some fear these options jeopardize client health and safety. An Arkansas project for people over the age of 18 who were eligible for Medicaid personal care services is evaluated. This study measures consumer satisfaction, unmet needs, and health.

Method: Eligible clients (people age 18 or older with physical or cognitive impairment who were eligible for Medicaid disability-related personal care services, maximum allowable hours of personal care per week = 16) were randomly assigned to a group who were provided services (control group) or to a group who were provided with a monthly allowance to purchase their own services (treatment group).1 Treatment group members were contacted by a counselor who helped them develop written plans for hiring workers (except spouses or representatives) and to purchase other services and goods, such as supplies, assistive devices and home modifications. With few exceptions, clients chose to have the program's fiscal agents maintain their accounts, write cheques, and file their tax returns. A baseline survey and a follow-up survey--9 months post random assignment--were conducted. 89% of the treatment group and 85% of the control group completed follow-up surveys. Because of physical or cognitive impairment, the use of proxy respondents was widespread.

Findings: Almost all in the treatment group hired family members or friends and some bought assistive equipment, supplies and medications. At the time of follow-up, 15% of treatment group members had chosen to stop participating. The results for the elderly and non-elderly treatment and control groups were similar. Treatment group members were significantly more satisfied with paid caregivers' reliability, schedule and performance. While both groups were very satisfied with the relationship with their paid caregivers, the report of incidences of neglect was reduced by 58% in the treatment group. The treatment group was less likely to report unmet needs and more likely to report satisfaction with overall arrangements. Finally care was at least as, and in some cases more, safe in the treatment group in terms of disability-related adverse events, health problems and general health status. Treatment group members were no more likely to fall, see a doctor because of a fall, or sustain injuries than control group members. Treatment group members were 20% more likely than those in the control group to report that they were very satisfied with the way they were spending their lives.

Conclusions: The direct funding approach yielded very large, positive treatment-control differences on almost all indicators of satisfaction and unmet needs for both the elderly and non-elderly groups. However, because the findings are based on a relatively new program in one state and the follow-up period is relatively short (9 months), caution should be exercised in generalizing the findings. This and other projects need to be evaluated with respect to cost effectiveness, impact on informal caregivers, and experiences of workers hired by consumers. 1. (Ontario has a direct funding program for people over the age of 16 who have a permanent physical disability but is limited to hiring attendants to assist with routine activities of daily living. The Ontario program is not geared to income as is the US Medicaid program. Currently, 691 people of whom 93 are over the age of 65 are enrolled in the program which is at maximum with 250 on the waiting list. Enrollees are eligible for up to 6 hours of attendant support per day and are not allowed to hire family members).

Reference: Foster L, Brown R, Phillips B, Schore J, Carlosn B. Improving the Quality of Medicaid Personal Assistance Through Consumer Direction. Health Affairs DATE. Web Exclusive. 22(3): 162-175.