The Quality of Consumer-Directed Long-Term Care

By Scott Miyake Geron

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.

The Language of Consumer-Directed Care

Before approaching the issue of quality in consumer-directed long-term care, we should be careful not to trip over the language we use to describe these services. Until recently, the term consumer-directed care (and similar expressions such as self-direction and self-advocacy) was used as a general term to describe any care that promoted consumer autonomy and choice, more or less equivalent to "consumer-centered care" and "person-centered care" in the United Kingdom. In the past few years, however, consumer-directed care (and other similar expressions) has come to be used more specifically--to denote particular services in which consumers are allowed to hire, train, supervise, and pay their own workers and, if necessary, to fire them.

While specifying which services consumer direction entails may make study and promotion of these services easier, such specificity could also be inappropriate. For example, consider the following questions: If a cognitively intact consumer prefers to receive homecare (or personal assistance services) from an agency rather than doing the hiring and supervising him- or herself, is that not a legitimate expression of choice and control? Is employment of a personal assistant of one's choosing (an independent provider) a prerequisite for "consumer direction" if a cognitively intact consumer does not want to make such a choice? These are easy questions to answer if we acknowledge the primacy of the consumers' preferences to select the care they receive, but more difficult to answer if consumer-directed care refers to particular types of programs, whether the consumers in them prefer them or not. For this reason, I will be using the term to refer broadly to any type of long-term-care service or program in which efforts are made to be responsive to consumers' values and preferences for care.

Quality 'Riddles' in Consumer-Directed Care

The issue of quality in consumer-directed long-term care raises a number of challenging questions. For example, the concept of choice is central to the notion of consumer-directed care, but can too much choice be a quality problem? For many it would be. There is no sense fooling ourselves--not everyone wants or can handle autonomy (Simon-Rusinowitz et al., 1997). Many people will willingly assume the responsibility to find, hire, and manage a personal assistant that suits them best, while others will be overwhelmed by these responsibilities. Some who could do so would rather not be bothered; some would prefer a guide or intermediary who could help them; and others would be happy for a friend or someone they trusted to perform these tasks. Moreover, as Glendinning has noted (1998), not all consumers will have the literacy, experience, and help needed to assume full autonomy and choice--and those who are non-native speakers, who are confused, or who lack personal or financial resources will be at a social disadvantage as "consumers." For those consumers who are unable or ill-prepared to take on these tasks, too much choice may not result in greater independence--but rather in a sense of powerlessness.

Even for consumers who do want control over their services, how much choice do consumers really need?

Perhaps the ultimate quality riddle is that consumers sometimes seem to choose a lesser standard of care, according to professional or "objective" standards of quality, but still seem quite pleased with their choices--indeed, often more pleased than consumers who are assured of receiving care from a provider with more professional credentials. Understanding the apparent willingness of consumers to select "substandard" care is one of the keys to assuring the quality of care of these services.

The Failure of Traditional Approaches

Unfortunately, traditional approaches based on long-accepted standards have proven unsatisfactory for assuring the quality of long-term care. The problems have been well documented, and I will highlight only some of the issues here (see, e.g., Applebaum and Phillips, 1990; Kane et al., 1991; Kane et al., 1994; Kramer et al., 1990). The heart of the problem for quality assurance in homecare is that most of the standards of quality (and the criteria, policies, rules, and guidelines derived from them) are based on the clinical experience and opinions of professionals or experts. The standards for long-term care that have been promulgated often have little to do with quality in the areas of care considered most important to consumers.

Alternatives to these approaches are being developed. Traditionally, most of the effort to measure quality has focused on the way care is rendered--the process of care. Standards to address process have improved from "implicit" standards, in which there are no prior agreements or accepted standards, to more explicit criteria (Brook, McGlynn, and Cleary, 1996). Other advancements include the development of clinical pathways, which provide detailed instructions for responding to specific client problems (National Chronic Care Consortium, 1995), and more evidence-based standards. More recently, attention has focused on outcome indicators, which refer to the actual accomplishments of a program or service, and objective indicators (sometimes called performance measures). While promising, even these new approaches fail to solve the quality issues in long-term care. Unlike acute-care services, which have as their aim the amelioration of particular illnesses or diseases, the accomplishments or outcomes of long-term care are not so clearly linked to receipt of services, which usually constitute only a small part of the consumer's everyday life (Kane et al., 1991).

Consumers' Definitions of Quality

What is remarkable and perhaps what is most disconcerting to some about consumer-directed long-term care--or at least those programs in which consumers exercise full choice and control over their own care--is that the quality standards are essentially set by the service users, not professionals, family members, or anyone else (Doty et al., 1999). The consumers in these programs determine what quality means to them by individually negotiating the terms of employment for their personal assistants and then monitoring the work performed. This type of independent-mindedness is contrary to existing ideas of quality assurance--indeed, it turns on its head the traditional notion of standards and whatever reassurance they provide professionals and policy makers concerned about the quality of care.

The experience of these programs, and the findings of researchers who have explored consumer perceptions of long-term care, is that consumers' definitions of quality of long-term-care services are simply different from those of professionals, family members, and other stakeholders. This fact explains the last of the quality "riddles" described earlier: Consumers who appear to be satisfied with "poor" quality care are not poor judges of quality, but rather are using different standards to evaluate their care. The traditional standards do not address areas of care important to them. Professionals and service experts have clear definitions of quality and have tended to make clear distinctions between such quality-related concepts as technical competence and humaneness--in this case, so that it would be possible to discuss the knowledge and skills of a health provider independent of his or her bedside manner (e.g., see Ware, 1978). However, there is compelling evidence that consumers do not define quality in the same way.

For example, consider this simple question: What does it mean to do a good job as a homemaker or personal care worker? Professionals have viewed competence to perform homecare tasks strictly in terms of the knowledge and skill requirements to do a particular job, and in healthcare, one of the most common formulations of technical quality is to equate it with effectiveness (that is, the degree to which improvements in service objectives are obtained). However, recent research suggests that consumers' perceptions of the ability of their workers to do a good job are affected by how much say consumers have about the way their workers perform those jobs and about which jobs the workers are allowed to perform. A worker may be able to do a good job, even following the consumer's directions, but may be so limited in what she is permitted to do that the consumer still is dissatisfied with the work performed (Geron, 1995).

Now consider this question: Does a consumer need to know and like her worker to feel satisfied that the worker does a good job? Most professionals would say no. Indeed, most professionals could cite best-practice standards for homecare that explicitly state that workers should not become friends with their clients. But, again, recent research shows that frail older consumers and younger disabled consumers who say their homecare worker or personal assistant does a good job tend to include the personal qualities of the worker; and older consumers in particular include how long they have known the worker in their assessment. Thus, a part of the judgment that a worker is skilled appears to mean that the consumer likes the worker or that the worker has remained with the consumer for a long period of time (Geron, 1995; Eustis and Fischer, 1991, 1992; Eustis, Fischer, and Kane, 1994).

Assuring Quality

The remainder of this paper will briefly outline what the issues would be if quality assurance were based primarily on consumer-defined views, including views of consumers who have control over the hiring and firing of their workers and those who receive care through more traditional homecare or case management agencies. Relying on consumer-defined views will not diminish concerns about the quality of these services, but will change their focus in important ways. Quality assurance efforts should focus on the following steps.

1. Let consumers define quality for the services they know best--nonmedical homecare. The most essential step to assuring the quality of consumer-directed long-term-care programs is to allow adult users of long-term care to set the quality standards for those aspects of care they know best--nonmedical personal assistance services--if they have the capacity and desire to do so, and unless there is evidence that the consumer (or the person's proxy) is unable to choose reasonably or that laws involving health or safety have been violated. We need to extend the right to control service quality not just to those consumers who are in programs where they can hire the personal assistants of their choosing, but also to consumers who receive services from agencies. Allowing adult users of long-term-care services greater voice in determining quality standards will not be easy and will require changes in laws, politics, and public opinion (Kapp, 1990, 1997, 1999; Sabatino, 1996; Sabatino and Litvak, 1992). Establishing consumer rights to make these judgments has proven controversial and difficult, as the efforts to address the legal and statutory barriers to establishing independent-living models of consumer-directed care have shown (Flanagan, 1994; Flanagan and Green, 1997) and as the concerns of state administrators have demonstrated (Lagoyda et al., 1999).

   From a quality point of view, however, the benefits of allowing consumers greater control appear incontrovertible. Research has long established that consumers given more control over their activities are more satisfied and achieve better outcomes, even in nursing homes (Langer, 1983; Lefcourt, 1981; Reid, Haas, and Hawkings, 1977). When adult consumers with functional impairments have been able to exercise control over the personal assistance they receive through participation in programs like the independent-living model of care or direct-payment programs in Europe, several recent studies have shown that consumers prefer them over agency-provided services and have obtained better outcomes (Doty et al., 1999; Doty, Kasper, and Litvak, 1996; Feinberg and Whitlatch, 1996). My own research has shown that frail elderly consumers who receive homecare services from agencies are more satisfied with their homecare when they have a stronger sense of personal control (Geron et al., 2000).

2. Develop other consumer-derived measures of quality. Not all adult users of long-term-care services will be in a position to control their long-term care to the extent possible in direct-payment models. For all consumers, including those for whom control over care is not a salient indicator, the most pressing quality assurance task is to develop consumer-derived indicators of quality that are appropriate for whatever specific types of services and care are provided. These measures can be used to monitor the quality of long-term-care services, identify individual quality problems, and serve as outcome measures for programs. The most common type of consumer-based quality measures are client satisfaction measures, an unfortunate label because there is general confusion about what consumer satisfaction means and how to measure it, and most satisfaction measures are not based on areas of service considered important to consumers.

   Client satisfaction measures generally have a poor reputation among researchers and service professionals, who know that consumers will generally say they are satisfied even if they are receiving care from the weakest providers. This tendency is true for a number of reasons, some having to do with the particular issues involved in assessing consumer opinions, but most having to do with how the satisfaction is assessed (Geron, 1998; Applebaum, Straker, and Geron et al., 2000). For example, it turns out that one of the worst ways to find out what older adults like and do not like about their care is to ask them directly if they are satisfied with it. This type of question leads to high satisfaction responses that do not necessarily reflect the respondent's real opinion, which is perhaps the most common complaint about satisfaction measures. Other common problems that lead to skewed or inappropriately high satisfaction responses are using single- or multiple-item global measures as a measure of satisfaction (e.g., "Overall, how would you rate the quality of the services you received?") or providing too few choices of response to survey items (e.g., only "yes" or "no"; "agree" or "disagree").

   The involvement of consumers in the design of satisfaction measures is now recognized as absolutely essential to ensure that the measure fully represents the dimensions of quality considered important to them (Geron, 1998, Geron et al., 2000). One recent example of a valid and reliable consumer-based measure of quality is the Home Care Satisfaction Measure (hcsm), a 60-item questionnaire based on consumer-defined notions of satisfaction, including the perspectives of ethnic minorities, which I developed with colleagues at Boston University and the New England Research Institutes (Geron et al., 2000). Consumer-based measures of quality are now being developed for other long-term-care services as well.

3. Focus assessments on areas where consumers (and caregivers) need assistance. Assessing the cognitive capacity of consumers to exercise full autonomy and choice will be one of the biggest challenges to assuring the quality of consumer-directed long-term-care programs. The desire of payers and family members for assurance that service users are cognitively capable of using information to make decisions is understandable. Programs must distinguish between two basic types of users--those who are cognitively impaired and unable to directly manage their own care and those who are capable of controlling or directing their personal assistance. How this distinction is made will vary by country, by state, and perhaps by city or county. The notion that consumers should have to "pass" or exceed a cut-off score on some kind of competency assessment is appealing but unrealistic. The judgment, knowledge, and skills required to manage care providers are complex and multifaceted, and it is likely that most consumers--even those with moderate to severe cognitive impairments--will be able to express preferences about or be able to manage at least some aspects of the long-term care that they receive. For this reason, assessment should be initiated when there is evidence that the consumer has trouble managing his or her care or, if an initial assessment is required, the focus of assessment should be on the areas in which consumers may need assistance, rather than on whether they are competent to manage at all.
4. Develop other outcome and objective measures. Other measures of quality beyond those defined by the consumer are also needed. One of the most exciting recent areas of research in homecare has been the emphasis on outcomes. Outcome criteria for quality refer to actual accomplishments of or the results achieved by a program or service and are a desirable alternative to the structure and process criteria developed by professionals. Examples other than consumer satisfaction are physical functioning, psychological and emotional well-being, and caregiver satisfaction. Outcomes of care have proven to be promising indicators of quality, but they are not without problems, perhaps the most notable of which is that it has proven difficult to attribute variations in outcomes in long-term care to particular services.
5. Ensure "truth in advertising" and adequate supply. The government has an important role to play in promoting the quality of consumer-directed long-term care. In most "free market" situations, a variety of regulatory controls operate more or less at a distance from the consumer to ensure that the markets operate fairly, that the goods or services meet basic quality standards, and that consumers are given sufficient information about products to make informed purchasing decisions and are not mislead. A similar pro-active role is required in consumer-directed long-term care. Government involvement is needed in order to be sure that states and program administrators get the consumer-directed side right; that is, that the program does involve consumer direction appropriate to the level of cognitive functioning of the client and is not just paying lip service to the concept.

   If a program says it is providing consumer-directed care, then it should have to meet certain requirements. These include fundamentally reinforcing the rights of consumers to define quality for their nonmedical homecare services as described above as well as providing clear information, establishing complaint procedures, systematically evaluating satisfaction and outcome, and training workers and consumers. In models where consumers have complete control over the hiring and firing of their assistants, care must be taken that consumers have been given the choice to participate, and that other options are available. Based on demonstration studies, there is some evidence that when these types of efforts are clearly developed in policies and procedures, programs get better results (Doty et al., 1999).

   Perhaps the most serious threat to the quality of consumer-directed care is on the supply side of the equation: the availability of a sufficient number of homecare workers or personal assistants to choose from, which is especially a problem in good economic times. Without a sufficient supply of workers, the concepts of autonomy and choice simply become empty rhetoric.

6. Retain professional standards of quality. Professional standards of quality in consumer-directed long-term care are still relevant; indeed, these approaches are still dominant in the new consumer-directed long-term-care demonstration programs (Flanagan, 1994; Scala and Mayberry, 1997). Ideally, the role and importance of professional standards in quality assurance will be more limited in the future for the large majority of homecare and nonclinical long-term care that involves activities that most consumers have done their whole lives. Professional approaches are most appropriately used for medical homecare, where technical skill and knowledge of procedures are relevant, for cognitively impaired consumers where there is no reliable proxy, for "high tech" medical problems, and for those consumers who expressly do not wish to be involved in the management of their own workers. Professional standards will still come into play to set minimum standards of care and will serve as evidence when there is a concern that consumers (or their proxies) are unable to manage their care.
7. Use technology to address safety concerns. Any adequate quality assurance program must have appropriate and sufficient safety procedures in place. These safety procedures are equivalent to assuring the quality of the netting under acrobats or trapeze artists and to investigating and responding to defects in the manufacture of cars. Quality problems are not eliminated when consumers are given the responsibility to determine the quality standards for their care. Indeed, this approach is obviously weak on external monitoring. Potential problems include consumer self-neglect; misuse of funds by the consumer, proxy, or intermediary; exploitation or mistreatment of personal assistance workers by a consumer or proxy; or mistreatment of the consumer by a worker. Existing laws used to identify abuse, neglect, or exploitation and to intervene when an adult becomes incapable of managing his or her affairs are important fall-back measures, but they do not appear to be flexible or effective enough to address immediate quality problems.

   Consumer safety and the consequent liability issues that may result are perhaps the most frequently mentioned concerns about consumer-directed care programs and, in my view, the most overrated. We are experiencing an information revolution that is already allowing people unprecedented access to information and services--and enhancing personal autonomy in ways that were unthought of just a few years ago. Recent advances in technology have the potential to significantly reduce the risk to consumer and worker safety, and the future applications of technology for quality assurance purposes are unlimited.

   With so much potential for quality and safety monitoring, the conflict between autonomy and safety will decline as the major problem in consumer-directed care. In its place, it is likely that conflicts between autonomy and privacy will become dominant.

Discussion

For a long time in quality assurance, the problem was getting people to see that the voice of consumers mattered at all. The monitoring and assurance of quality were once the sole dominion of health professionals, and their unchallenged authority as quality experts was their most potent shield from outside regulation and interference. For this reason, the challenges in long-term care were (1) to convince people that consumers had valuable information related to quality and (2) to convince skeptics that it was possible to get consumers to say what they liked and did not like about services in a way that was valid and reliable. These challenges have been met. The essential quality problem in consumer-directed care is to ensure that the values and preferences of consumers are carried out, as long as they do not infringe on the rights of others or break the law. The challenge now is to allow all adults with disabilities greater responsibility to control the nonmedical care they receive, to extend consumer-defined quality measures to the forefront of quality assurance efforts, and to use professional approaches in a more supportive and limited role.

Scott Miyake Geron, Ph.D., is associate professor, School of Social Work, Boston University, Boston, Mass.

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