INDEPENDENT CHOICES: A National Symposium on Consumer-Direction and Self-Determination for the Elderly and Persons with Disabilities. The Quality of Consumer-Directed Long-Term Care


With most of the purchases that people make or the activities they choose to engage in, we do not worry about the quality of those products or services--that's their own business. We leave it to them to decide whether the car that they drive is safe enough, the home that they live in is clean enough, or the food that they eat is healthy enough. The choices people make are an endless source of gossip and commentary, but most acknowledge that people have the right to make those choices.

The fact that we raise the issue of quality in consumer-directed long-term care highlights what is both obvious and unique about long-term care--that adult users of these services have chronic functional limitations, and those with cognitive impairments are often very different from the apocryphal autonomous, well-informed decision makers assumed by economists and libertarians. Even when a person is assuredly compes mentes but only requires long-term care because of physical disability, the issue of quality emerges, although typically as a poor relation to payer concerns about accountability. The public has maintained an interest in the effectiveness and quality of services because of the high costs of publicly supported homecare, concerns about the safety of consumers, and the potential risks of legal liability.

The philosophy of allowing people to have control and autonomy over their own lives and respecting the choices that people make is not new--it is consistent with basic humanistic values that have been articulated in cultures all over the world for hundreds of years. These ideas have been acknowledged for a long time in the "helping professions" such as social work and nursing, and resonate in the ideas of consumer involvement in services and treatment programs in the case management and homecare literature (e.g., Geron and Chassler, 1994).

But it is also true that consumer-directed care is a reaction to decades of care provided according to the dictates of professionals, with the views of consumers rarely addressed or considered. As consumers, patients, or clients, most of us have experienced the "know-it-all" smugness of bureaucrats and the tyranny of professionals who did not take our views seriously. The advocacy of the independent living movement and other disabled-rights advocates (Batavia, DeJung, and McKnew, 1991) in the United States; positive reports from longstanding programs of direct payment to consumers in France, the Netherlands, Germany, and Austria (Tilly, 1999); and newer demonstrations and state programs in the United States and England (Glendinning et al., 2000) have crystallized these arguments in long-term care, and have brought about a significant rethinking of professional approaches to care for adults with disabilities living in the community.

This article presents an approach to assuring the quality of consumer-directed long-term-care programs that is based primarily on the views of consumers and secondarily on other consumer-derived quality measures, as well as more traditional approaches. The reasons for reliance on this new, consumer-oriented approach are as follows: (1) traditional approaches to quality assurance based on standards set by professionals have not worked in long-term care; (2) consumers define quality differently compared to professionals, caregivers, or other stakeholders; and (3) when consumers are given the opportunity to set their own standards of quality for the types of care that they know best--the nonmedical services such as homecare and personal care--they are more satisfied and achieve better outcomes. Quality assurance approaches based on these principles will not diminish quality concerns about these services, but will change their focus. Quality will still need to be measured according to criteria established by professionals, but these criteria should become subservient to consumer-derived measures of quality. Professionally derived criteria should be reserved primarily for instances in which consumers cannot speak for themselves and where there is no reliable proxy to represent their interests, for "high tech" medical situations in which consumers cannot be expected to have the technical knowledge to judge the appropriateness or quality of care, and to set minimum standards of care.