Consumer Direction in Long-Term Care

Introduction Over the past decade, researchers and policy makers have begun to pay increasing attention to consumer direction in long-term care. A number of factors, including aggressive advocacy on the part of younger people with disabilities, a growing consumer movement in health and long-term care, concerns about the costs of long-term-- care services, and the recent shortage of front-- line workers, have contributed to this heightened interest in consumer direction. I have had a long-standing interest in consumer direction as a researcher and policy maker responsible for aging and long-term-care policy in the U.S. Department of Health and Human Services. I was, therefore, delighted when the Generations editorial board asked me to serve as guest editor for a special issue on this topic. The expert contributors to this issue reflect the broad range of policy, practice, and research perspectives that are critical to our understanding of how consumer direction in long-term care evolved, the opportunities, challenges, and limitations of this approach, and future directions for the financing and delivery of long-term care. DEFINING CONSUMER DIRECTION As policy makers begin to explore the potential and pitfalls of consumer direction in long-term care, it is critical to provide a clear definition of the concept and to identify the parameters of this approach. Consumer direction in long-term care starts with the premise that individuals with long-term-care needs should be empowered to make decisions about the care they receive, including having primary control over the nature of the services and who, when, and how the services are delivered. Consumer direction also assumes that long-term care is predominantly nonmedical, focused on primarily low-tech services and supports that allow individuals with disabilities to function as independently as possible. Thus, the consumer should not be forced to rely on professionals to make key decisions about care and to be "managed" by a formal system. Consumer direction is not one strategy. It reflects a continuum of approaches based on the level of decision making, control, and autonomy allowed in a particular situation. The cash model is at one end of the consumer-direction continuum. This approach assumes that people know what they need and how to purchase it. Cash benefits tied to level of need or some other criterion provide the long-term-care consumer with the greatest flexibility in using resources to meet particular needs. The consumer decides how to best use the dollars, including purchasing services from a formal vendor, hiring a next-- door neighbor to help with activities of daily living, purchasing some type of assistive technology to enhance independence, or modifying the person's own home to make it possible to remain in the community. Professionally managed service packages are at the other end of the consumer-direction continuum. Most publicly funded home- and community-based care programs, in which beneficiaries have access to a set of prescribed services, fall into this category. Typically, a professional care manager develops a care plan tailored to the needs of a particular client. Even within this approach, however, there is the potential for consumer direction. The extent of consumer direction is determined by the degree to which the client is proactive in the development and ongoing implementation of the care plan and has some control over other decisions related to service delivery. Approaches reflecting increasing levels of consumer direction lie between these two extremes. Within some programs with service packages, clients have the discretion to hire and fire their own workers and to decide how and when services will be provided. Some programs allow individuals to hire family members as caregivers. Voucher programs fall short of allowing full client discretion through a true cash model, but within some constraints they do afford long-- term-care consumers great flexibility in how and where benefits can be used. …