INDEPENDENT CHOICES: A National Symposium on Consumer-Direction and Self-Determination for the Elderly and Persons with Disabilities. Implementation Issues for Consumer-Directed Programs: A Survey of Policy Experts

(INTRO ONLY)

The aging community's approach to homecare services has been changing during the past decade. While many long-term services for older people remain traditional in nature (i.e., arranged for consumers by professionals with minimal consumer input), an increasing number of community providers and consumers of long-term care support more consumer control and choice within service delivery. This consumer-directed approach to providing homecare services has been spearheaded by the disability community, which refers to these services as personal assistance services.

While many older people might benefit from consumer-directed services, researchers have limited knowledge about implementing such programs for elders. Researchers have only recently begun to address such questions as how many older consumers would prefer consumer-directed services and what consumer characteristics would lead to a choice for more autonomy. These researchers surveyed personal-care consumers to determine their preferences for "cash and counseling," a consumer-directed option that offers a cash allowance and information services to people with disabilities. The cash allowance enables consumers to purchase needed services and products that help maintain their independence. The survey showed that a sizable number of older consumers were interested in this consumer-directed choice, although interest was higher among younger consumers.

As interest in consumer-directed services grows, many additional questions need answers regarding how to adapt a consumer-directed approach to homecare services for older people. This article presents findings from telephone interviews conducted with twenty policy experts from the aging and disability communities. The purpose of the study was to assess implementation issues that arise when adopting a consumer-directed approach to aging services and to inform the design of the Cash and Counseling Demonstration and Evaluation (CCDE), an ongoing demonstration of a consumer-directed program offering a cash benefit (see Mahoney, Simone, and Simon-Rusinowitz, this issue, for a detailed description of the project).

Our research questions attempted to assess interest in adopting a consumer-directed approach to service delivery for the elderly community and to address implementation issues as they relate to consumers, providers, payers, and policy makers. We asked policy experts to address several issues: Do older consumers desire this type of service, and are their wants and needs different from those of their younger counterparts? If so, how? Do older consumers want to become employers of their personal attendants, charged with the responsibilities of hiring, training, managing, and paying their employees? Are these preferences related to age or other consumer characteristics (e.g., degree and type of disability)? How can consumer-directed programs balance the sometimes conflicting goals of maximum consumer independence, quality assurance, and accountability for public funds? How do providers accustomed to being in charge make a shift to consumer direction? In order to facilitate future innovations in healthcare, it is important to examine the key issues in introducing consumer-directed principles into healthcare programs for the aging and disability communities.

The following sections summarize the experts' views about implementing consumer-directed programs and barriers to implementation from four perspectives: those of consumers, providers, payers, and policy makers. We conducted twenty in-depth telephone interviews (averaging seventy-six minutes in length) with policy experts from the aging and disability communities, including program administrators and leaders in home- and community-based services. Their affiliations included universities, federal and state government, non-university research settings, national associations, private consultants, a private foundation, and a health insurance company. The interviews took place over a period of one year, from September 1996 through August 1997.