U.S. Department of Health and Human Services
Does Consumer Direction Affect the Quality of Medicaid Personal Assistance in Arkansas?
Executive Summary
Leslie Foster, Randall Brown, Barbara Phillips, Jennifer Schore and Barbara Lepidus Carlson
Mathematica Policy Research, Inc.
March 2003
This report was prepared under contract #HHS-100-95-0046 between the U.S. Department of Health and Human Services (HHS), Office of Disability, Aging and Long-Term Care Policy (DALTCP) and the University of Maryland. For additional information about the study, you may visit the DALTCP home page at http://aspe.hhs.gov/daltcp/home.htm or contact the ASPE Project Officer, Pamela Doty, at HHS/ASPE/DALTCP, Room 424E, H.H. Humphrey Building, 200 Independence Avenue, SW, Washington, DC 20201. Her e-mail address is: Pamela.Doty@hhs.gov.
Medicaid beneficiaries who have disabilities and receive personal care services (PCS) from home care agencies have little control over their care. As a result, some are dissatisfied, have unmet needs, and experience diminished quality of life. This study of Arkansas's Cash and Counseling demonstration program, IndependentChoices, examines how consumer direction affects these aspects of care quality relative to agency-directed services.
A Randomized Design and Comprehensive Survey Data Provided Definitive Results.
Demonstration enrollment, which occurred between December 1998 and April 2001, was open to interested Arkansans who were at least 18 years old and eligible for PCS under the state Medicaid plan. After a baseline survey, the 2,008 enrollees were randomly assigned to direct their own PCS as IndependentChoices consumers (the treatment group) or to receive services as usual from agencies (the control group). IndependentChoices consumers had the opportunity to receive a monthly allowance, which they could use to hire their choice of caregivers (except spouses) and to buy other services or goods needed for daily living. They could designate representatives and call on program counselors for help managing the allowance.
Quality indicators were drawn from computer-assisted telephone surveys. Nine months after baseline, we asked treatment and control group members factual questions about disability-related adverse events and health problems and elicited opinions about (1) satisfaction with care, (2) unmet needs for assistance with daily activities, (3) quality of life, (4) general health status, (5) self-care, and (6) ability to perform daily activities without help from others. We used binary logit models to separately estimate program effects for nonelderly and elderly sample members, while controlling for a comprehensive set of baseline characteristics.
IndependentChoices Dramatically Improved Consumers' Lives.
Compared to the agency-directed system, IndependentChoices markedly increased the proportions of consumers who were very satisfied with their PCS and thinned the ranks of the dissatisfied. Specifically, IndependentChoices consumers were more satisfied with the timing and reliability of their care, less likely to feel neglected or rudely treated by paid caregivers, and more satisfied with the way paid caregivers performed their tasks. The program also reduced some unmet needs and greatly enhanced quality of life. Moreover, it produced these improvements without discernibly compromising consumer health, functioning, or self-care. Both elderly and nonelderly adults fared better under IndependentChoices than they did with agencies.
While most PCS users are satisfied receiving services from agencies, IndependentChoices has clear benefits for those who wish to direct their own services. Factors such as program costs must be examined before the desirability of consumer direction can be fully confirmed. However, from a consumer satisfaction standpoint, states have compelling reasons to include programs like IndependentChoices as an option for people who are eligible for publicly funded PCS.