Consumer and Counselor Experiences in the Arkansas IndependentChoices Program. BACKGROUND AND INTRODUCTION


About 1.2 million individuals receive noninstitutional supportive services through state Medicaid plans or home- and community-based waiver programs (LeBlanc et al. 2001; Kitchener and Harrington 2001).1 Under state plans, services are largely restricted to human assistance with personal care and homemaking and must be provided by licensed home care agencies. These agencies recruit, train, schedule, and supervise the staff who assist beneficiaries. Waiver programs may also offer other disability-related goods and services, but their coverage is often limited and someone other than the beneficiary (namely, a case manager) decides whether they are needed. This system of care, while adequate for many recipients, has been criticized for over-medicalizing services and not being flexible enough to meet recipient needs effectively. Moreover, a perennial shortage of workers providing this help, stemming from its low pay, poor benefits, and physically and emotionally demanding nature, worsens when the economy is strong and is likely to deepen as the U.S. population ages and demand for workers increases.

In contrast to these traditional service models, states are increasingly offering Medicaid beneficiaries the opportunity to obtain personal care from individual providers (Velgouse and Dize 2000). This alternative has come to be known as “consumer-directed” care, since beneficiaries who use individual providers assume the employer’s role of hiring, managing, and possibly terminating their workers (Eustis 2000). An expanded model of consumer direction would allow beneficiaries to manage not only their human assistance but also other covered supportive goods and services. Consumer direction is based on the premise that personal care does not require the intervention of medical professionals because it is “low tech” and nonmedical. Rather, consumers should be empowered to make informed choices about their assistance and provided with supports to take control of it (Benjamin 2001; Stone 2001; Eustis 2000; Stone 2000; and Doty et al. 1996).

For people with disabilities, supporting choice and control over personal assistance has the potential to better meet individual needs and resonates strongly with basic American values, as re-affirmed in the Administration’s New Freedom Initiative. Moreover, consumer direction could enlarge the pool of personal care workers if consumers can hire family or friends to help them. Finally, consumer-directed care might be less costly because agencies would no longer be responsible for hiring, training, and supervising workers (Stone 2000; and Eustis 2000).

Nevertheless, consumer-directed personal assistance in a publicly funded program, like Medicaid, raises many concerns. These include (1) how to ensure care quality and establish accountability for adverse consumer outcomes; (2) how to ensure the benefit is used appropriately; (3) how to ensure workers are trained adequately and treated fairly; (4) whether family members who might otherwise help without pay may be hired as workers; and (5)whether consumer direction should be available to individuals with cognitive deficits (Benjamin 2001; Kane and Kane 2001; Kapp 2000; and Doty et al. 1996). Despite these concerns, in 1999, there were an estimated 139 publicly funded consumer-directed personal assistance programs in the United States (Flanagan 2001).

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