Putting the consumer first: an introduction and overview.

If anything best describes recent trends in the complex world of long-term care (LTC), it is the growth of interest and investment in home and community-based services (HCBS). Various forces have driven efforts to shift from disproportionate investment in nursing homes to a more diversified set of institutional and noninstitutional services, including home-based services, day care, respite services, case management, and others. The Cash & Counseling Demonstration and Evaluation reported in this Special Issue examines a new approach to the provision of increasingly important home-based personal assistance services (PAS) to people with disabilities of all ages. Because most people with LTC needs now live in community settings, especially at home, there has been a growing demand for enhanced supportive services at home—in particular, for “personal care” or “personal assistance” services. PAS include help with activities of daily living (ADLs) such as bathing, dressing, eating, and toileting, along with instrumental activities of daily living (IADLs) like cooking, shopping, and housekeeping. These individualized services may make the difference between living independently at home and needing support in congregate or institutional settings (LaPlante, Harrington, and Kang 2002). Most people with personal assistance needs receive help from unpaid family members, but other options have emerged for those without adequate sources of informal assistance. Private home care agencies provide paid personal assistance in the market place, and public programs provide these services to those with low-incomes and thus limited capacity to purchase routine help privately. While there are now several such public programs, including those funded under the Older Americans Act, the Social Services Block Grant, and state-only sources, by far the most important are financed through the Medicaid program. Medicaid funds PAS modestly through its home health benefit and more generously through HCBS waivers and the optional state plan personal care services benefit. Recent analysis indicates that an estimated 13–15 million persons needed PAS in 2004. Among these, just over four million needed paid (formal) services (Kaye et al. 2006) with one to 1.5 million of these receiving PAS through Medicaid benefits and waivers. The Cash & Counseling Demonstration was designed to provide a more consumer-centered alternative to the traditional model of PAS delivery by home care agencies. PAS (like most home-based services) typically are provided by agencies that send nurses, therapists, and aides into the home to deliver both medically related home health services and more supportive PAS. For example, when a Medicaid applicant is deemed eligible for PAS, he or she is referred to an authorized provider agency that assigns a worker and schedules service visits. The agency also defines allowable tasks, monitors worker performance, processes any complaints, arranges backup, and otherwise manages service delivery (Benjamin 2001). Critics of the agency-based model argue that all of these decisions are more likely to be made on the basis of agency interests than in response to recipient needs. For example, workers may be in short supply and are assigned as available and rotated as needed, disrupting both nascent and long-standing service relationships. Scheduling is done by the agency with what may be limited regard for recipient preferences about when help is most needed. Timely visits may be sacrificed for agency needs without asking or informing clients beforehand or arranging back-up services. For liability reasons, agency workers are constrained in the tasks they may perform. What training workers receive may involve doing assistance tasks in a prescribed way, even if not compatible with recipient preferences. More generally, critics charge that the professional-agency model tends to assume that people with physical limitations must also have other limitations that restrict their analytical capacities and ability to express preferences and make sound decisions about services. In consumer-directed approaches, like Cash & Counseling, many of these choices and responsibilities are shifted to the recipient or “consumer.” Consumer direction assumes that most supportive services are essentially nonmedical, low-technology services that do not require either extensive worker training or external monitoring. Instead, the consumer can decide which services are needed, when and how they are delivered, and by whom. In arranging assistance, the consumer may be free to choose a family member or friend to be their personal assistant. From this perspective, consumers should be empowered to make all or most service decisions, and physical (and even cognitive) limitations should not be barriers to expressing preferences and making decisions about services so personal and fundamental to their quality of life. The Cash & Counseling model is a more intensive variant of “consumer directed care,” in the sense that it places in the hands of consumers direct control of monthly cash allotments and considerable discretion to purchase any services or goods they consider essential. In this model, recipients can manage their cash directly or pay a small fee to have a certified fiscal agent manage fund accounting. The counseling part of the program involves professionals who are available to provide consumers with information and advice as they assume the role of “employer” in managing funds and services.