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a Department of Social Welfare, School of Public Policy and Social Research, University of California–Los Angeles
b Center for Child and Family Policy Studies, School of Public Policy and Social Research, University of California–Los Angeles
Correspondence: A. E. Benjamin, PhD, Department of Social Welfare, School of Public Policy and Social Research, UCLA, 3250 Public Policy Building, Los Angeles CA 90095-1656. E-mail: tedbenj{at}ucla.edu.
Decision Editor: Laurence G. Branch, PhD
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Abstract |
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Key Words: Home care • Consumer direction • Service outcomes
The visibility of consumer-directed models for organizing services to people with supportive services needs has grown in recent years. Consumer-directed models are most common in programs targeted to persons with disabilities and generally involve services not considered highly skilled but rather social and supportive, particularly personal assistance and homemaker/chore services. Typically, this model permits or requires the recipient to recruit, select, hire, train, and supervise a home care provider(s) without the participation of a home care agency. Recipients in effect are small employers who hire (and fire) helpers and supervise their own service tasks. In turn, the provider is an employee of the recipient, not an agency, and thus has incentives to deliver services as directed by the recipient or risk losing the job. The provider is most often paid by an intermediary (e.g., a government agency or a contracted representative), although in the purest version, all funds are managed by the recipient (
Batavia, DeJong, and McKnew 1991
;
DeJong, Batavia, and McKnew 1992).
Significant federal, state, and foundation resources now support experiments in consumer direction and its integration into publicly funded service programs, most notably Medicaid's personal assistance benefit (
Doty, Kasper, and Litvak 1996;
Simon-Rusinowitz et al. 1997). Until recently, there has been little rigorous research designed to understand the impact of this consumer-oriented approach to service delivery. New evidence suggests that the advantages of shifting responsibility for making most decisions about services implementation to recipients may well outweigh the disadvantages (
Beatty, Richmond, Tepper, and DeJong 1998;
Benjamin, Matthias, and Franke 1998,
Benjamin, Matthias, and Franke 2000). Less is known, however, about whether the age of the recipient of consumer-directed services is important to understanding the uses and impact of this model.
Consumer direction has its roots in the "independent living" movement among younger adults with physical disabilities, and until the past decade was primarily seen as appropriate to young adults perceived to have the requisite commitment and energy to assume responsibility for their own services. Recent research on the experiences of elderly people raises important issues about variations by age in preferences for and experience with self-direction (
Doty et al. 1996;
Eustis and Fischer 1992;
Hofland 1988;
Kane and Degenholtz 1997;
Simon-Rusinowitz and Hofland 1993;
Simon-Rusinowitz et al. 1997). Scholars have long been interested in autonomy and old age. A classic synthesis by
Rodin 1986 suggests that, as people age, a sense of control may become more rather than less important and that opportunities for control are an essential element of well-being later in life. In the context of services to functionally impaired elders, however, traditional service models have emphasized vulnerability, dependency, medical instability, and the need for security as essential elements of service planning (
Cohen 1988;
Eustis and Fischer 1992;
Glickman, Stocker, and Caro 1997;
Scala, Mayberry, and Kunkel 1996;
Simon-Rusinowitz et al. 1997). Put differently, service planners tend to equate physical limitations with psychological and spiritual dependency among elderly people, and to focus on dependency based on functional limits in the absence of assistance, rather than on the potential for independence that may result from providing assistance.
Other analyses of old age and self-direction suggest that among users of home care, younger clients are more likely than older ones to take charge of their services, but that perhaps a third of the elderly population prefer to substantially direct their care (
Doty et al. 1996;
Eustis and Fischer 1992;
Simon- Rusinowitz et al. 1997). While there is some agreement that younger and older people with disabilities have different goals and experiences concerning consumer direction in home care, there is less consensus about preference variations by age when experience is the same. In other words, there is evidence that service users tend to prefer models with which they are familiar, and that consumer-directed options are more available to younger clients than to older ones. However, there is little evidence about whether and how age affects service preferences and experiences within program settings that permit consumer direction across age groups (
Beatty et al. 1998).
Recent findings from a federally funded study of alternative models for organizing personal assistance services in California suggest that recipients of consumer-directed services report either similar or more positive service outcomes than do recipients of agency-based services (
Benjamin et al. 2000). These findings are surprising in light of widely held stereotypes of aging and disability that portray these populations as having little interest in or capacity for managing their own services. These findings, although limited to one large program in one state, challenge the argument that agency-based home care possesses obvious advantages over consumer-directed approaches to providing supportive services to disabled populations.
When "recipient age" is introduced as one of a set of control variables in a multiple regression analysis of service outcomes, the results are ambiguous (
Benjamin et al. 2000). For a majority of outcomes, age does not seem to be a factor in understanding service impact across models. However, we still know relatively little about whether (and how) age may matter among active users of consumer-directed services. Do elderly people find the experience of consumer direction more problematic than younger recipients? Do younger recipients experience more positive outcomes than older persons when directing their own services? Do the types of perceived benefits vary by age group? Are these relationships linear, in the sense that there is a pattern of experience clearly associated with advancing age? Put differently, do findings that a consumer-directed model yields more positive outcomes depend heavily on a "youth effect," by which most of the positive effects of consumer direction derive from its impact on younger users, one that might outweigh an indifferent or negative impact on older people? Or are positive outcomes distributed relatively evenly across the life span for those with disability, so that there is little or no age effect associated with the impact of consumer direction? Given that the concept of "outcomes" has many dimensions, is there an age effect on some dimensions but not others? If so, are there theoretical underpinnings that illuminate these variations? This study was designed to provide initial answers to these complex questions.
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Methods |
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County caseworkers, not consumers, decide whether eligible people are assigned to the agency model or the consumer-directed model. A majority of recipients live in counties that offer only consumer-directed services. The minority of counties offering both models typically assign to the agency option those who are socially isolated, are predicted to have difficulty finding their own provider, and need relatively few hours of service. This seeming paradox (consumer choice—whether one wants it or not) means that very little self-selection can occur. In addition, this program provides very few if any supportive services for those who need training and assistance in making consumer direction work (e.g., learning how to locate and hire an in-home provider). Importantly, the program does permit recipients in the consumer-directed model to hire anyone they choose as a provider, including family members (
Benjamin, Franke, Matthias, and Park 1999). Because federal regulations restrict the hiring of spouses and parents of minors (
Lewis-Idema, Falik, and Ginsburg 1991), IHSS draws on state and local funds to reimburse immediate family members.
No program-wide provisions are made to meet the special needs of people with cognitive impairments. Counties vary some in terms of assisting new clients in initiating services, but while this is a very generous program in terms of potential service hours, it is a very lean one in terms of support for new clients. Furthermore, even in those counties with an agency option, it is clear that contract agencies in this program generally are not enthusiastic about serving those with cognitive impairments.
Sample
A random sample of 1,095 IHSS recipients was selected and interviewed using computer-assisted telephone interviewing between October 1996 and March 1997. The sample was drawn from a listing of all program recipients over the age of 18 in mid-1996. Interviews were conducted in English, Spanish, and three Asian languages (Cantonese, Mandarin, and Vietnamese). Non-English speakers using other languages, those under age 18, and those with severe cognitive impairment (as indicated in assessment scores on memory, orientation, and judgment) were excluded from the sample frame. Exclusion rates (for all reasons) differed little across age groups: under 65 = 30.6%; 65–74 = 33.9%; and 75 and older = 29.6%.
The decision to exclude severely cognitively impaired persons merits further comment. Because the interviews were conducted by telephone, only proxies could be interviewed for this group. Pretest interviews indicated considerable overlap between proxies and paid providers in this program because close family members can be hired as workers. As much of the client interview addressed service experience and worker performance, we were reluctant to include either proxies who might be evaluating their own performance or (as an alternative) proxies too far removed from the client service experience. Data interpretation issues raised by this sampling decision will be considered later in the discussion of findings.
The recipient sample was stratified by service model (consumer-directed, n = 511; agency, n = 584) and by age (over and under 65). In order to compensate for the fact that a majority of recipients received 20 or fewer weekly hours of service but that some received 100 hours or more, we also stratified by approved program service hours (over and under 20 hours per week), which serves as a rough proxy for service intensity and reliance on program services. The recipient sample for the consumer-directed model (CDM) was drawn from all 58 counties, and these 511 CDM respondents are the focus of this analysis.
The recipient response rate was 77.8%. Sample respondents on average were younger (M = 64.6 years) than nonrespondents (M = 71.2 years), primarily because of higher refusal rates among those over age 75. (Refusal rates for the age groups <65 = 14.7%, 65–74 = 23.4%, and 75+ = 28.7%.) Although we have only limited data on the functional status of nonrespondents, that group averaged fewer service hours (implying less assessed service need) than did respondents despite having slightly more severe cognition scores.
Measures
Three recipient outcomes were considered: Empowerment, Unmet Needs, and Service Satisfaction. First, supporters of consumer direction argue that recipients who direct their own services become more empowered in the process of designing and guiding their own care, and that this will be reflected in their preferences and experiences. Second, advocates argue that negotiation between recipient and chosen worker will yield better services and fewer unmet service needs. Finally, because recipients control the process of service organization and delivery, they should be more satisfied with various aspects of service provision. For this analysis, the central question is whether outcome patterns will vary by the age of the recipient exercising consumer direction. Items on recipient outcomes included 12 on recipient empowerment and 15 on recipient service satisfaction.
Established measures were used where appropriate; in some instances, they were adapted to the study population and/or objectives. Items on Empowerment were adapted from the National Home Care Survey (
Leon 1994) and from instruments developed by
Eustis and Fischer 1992,
Kimmich and Godfrey 1991, and
Barnes 1995. Unmet Need was assessed using measures developed by
Allen and Mor 1995,
Allen and Mor 1997. Service Satisfaction measures were adapted from those developed on medical outcomes by
Davies and Ware 1988,
Davies and Ware 1991 and
Marshall and Hays 1994,
Marshall, Hays, Sherbourne, and Wells 1993, and from those of
Leon 1994 and others on home care. The telephone interview instrument also included items about recipient demographics, functional status (
Katz and Akpom 1976;
Lawton 1971), mental and emotional status (
Ware and Sherbourne 1992), IHSS service use, and informal and community supports (
Kemper et al. 1988).
Principal axis factor analysis was used to determine the underlying dimensions of Empowerment and Client Satisfaction. For Unmet Need, we used the two scales themselves, which are based upon activities of daily living (ADLs) and instrumental activities of daily living (IADLs), because the requirements for factor analysis were not otherwise met (
Benjamin et al. 1998). Data reduction yielded 10 outcome dimensions: Empowerment = (1) service choice and satisfaction, (2) preferred role, and (3) client assertiveness; Unmet Need = (4) unmet ADL needs, (5) unmet IADL needs; and Service Satisfaction = (6) service technical quality, (7) provider shortcomings, (8) service impact, (9) general service satisfaction, and (10) provider interpersonal manner. Internal-consistency reliability ranged from 0.54 to 0.76 (
Cronbach and Meehl 1955). All alphas were above the 0.50 criterion set for new instruments by
Nunnally 1978 for group comparisons.
Analysis
All outcome analyses were done at the recipient level using multiple regression based on the general linear model. The analyses incorporated sampling weights and accounted for design effects (
Kish 1967), using the Stata statistical software package (
StataCorp 1997). As described, outcome dimensions were specified using factor analysis. Predictor variables included recipient demographics, recipient case mix, and service characteristics, including type of CDM provider (family, nonfamily). The inclusion of client characteristics is essential because many other features of the client and his or her condition, some of which may vary with age, may be directly associated with service outcomes. The inclusion of dimensions of service experience is based on the argument that the extent and content of home-based services will vary, and that these variations may affect reported outcomes relatively independent of client characteristics. All equations were run twice using alternative measures of client age: a simple dummy variable for young/old (-/+65); and a three-variable approach based on a contrast coding scheme, in which those aged 45–64, 65–74, and 75 and older, respectively, were compared with those under age 45. Because the results of the latter analysis added little to the former, we report only regression results using the young/old age variable, while commenting where appropriate on results from the more detailed approach.
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Results |
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Interestingly, younger recipients are more likely to share a home with their provider than are older ones (39.4% vs 28.5%). Neither group has encountered much language difficulty communicating with their providers; in fact, this is a much more pervasive problem for clients with agency workers (
Benjamin et al. 2000). Strikingly, younger recipients are nearly three times as likely (41.8%) to receive extra (unpaid) service hours from their providers than are older users (15%).
In this sample of people needing supportive services, older recipients report being less able than younger ones to rely on the help of family and friends (see Table 3 ). More younger recipients (75.1%) have someone to turn to for advice about problems and issues than do older ones (66.4%). More younger users receive unpaid help from relatives and friends (46.8%) than do older ones (33.9%). Similarly, when sources of back-up service help are explored, younger recipients more often cite family and friends (71%) than do older users (58.7%), and older recipients are more likely to report no one available (22.2%) than are younger ones (17.4%).
Age and Recipient Outcomes
To understand age-associated outcome patterns, we first examined bivariate relationships between age group and dimensions of Empowerment, Unmet Needs, and Service Satisfaction. As noted, rotated factor analysis yielded three factors for Empowerment: service choice and satisfaction; preferred role; and client assertiveness. Along with age distinctions between the nonelderly and elderly recipients, we also examined differences between the younger and older elders. Weighted mean scores for the three dimensions of Empowerment by age category are reported in Table 4 , first for those under and over age 65 (cols. 2–4), then for those elders aged 65–74 and aged 75 and older (cols. 5–7). (Column 1 shows the score ranges for each outcome.) On all three Empowerment dimensions, scores for those recipients aged under 65 are higher than for those 65 and older (higher scores indicate more empowerment), and on the first and third, these differences are statistically significant. The first outcome captures degree of perceived choice afforded by the consumer-directed model as well as the degree of satisfaction with that choice. Although absolute differences by age group are small, clients under age 65 report greater choice and satisfaction than those 65 and older. When scores within the over 65 cohort are examined (cols. 5–7), it is apparent that the difference is based on scores for those aged 75 and older; the score for those 65–74 is essentially identical to that of the under 65.
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Unmet Needs were assessed in terms of the number of assessed ADL and IADL needs. There are minimal differences by age on unmet ADL needs. Although there are only slight group differences in IADL functioning levels (see Table 2 ), older recipients report fewer unmet IADL needs (i.e., higher scores) than younger ones, and the difference is statistically significant. This result is not based simply on responses by the oldest-old, as differences are small between those aged 65–74 and 75 and older.
On the five dimensions of Client Satisfaction, bivariate differences by age emerged on only one. For technical quality, general satisfaction, and interpersonal manner, there are no differences between younger and older service users (and none within the elderly cohort). When asked to assess the impact of the provider on getting things done inside and outside the home, users under age 65 are more positive than older ones about the impact of supportive services on their lives. Again, this difference reflects lower scores across both subsets of the older cohort.
Outcomes Analysis
Multiple regression analysis permits us to move beyond bivariate analysis and examine more carefully the relationship between age and outcomes while taking other characteristics of recipients and services into account. When demographic, case mix, and service experience measures are added to an equation that regresses age (+/-65) on the three Empowerment outcomes, age is a statistically significant predictor for both "service choice and satisfaction" and "preferred role," but no longer for "client assertiveness" (see Table 5 ). For each outcome, those who are under age 65 have higher empowerment scores than those aged 65 and older. In the case of "preferred role," there are no specific variables that, when controlled, seem to account for the emergence of age as significant statistically. Rather, it seems to be the cumulative effect of a set of client descriptors that brings out differences by age. By contrast, "client assertiveness" differences that were statistically significant by age (see Table 4 ) are no longer so when client characteristics (most obviously, ethnicity, paramedical needs, and confidence in back-up help) are included in the equation. When demographics, case mix, and service experience are taken into account, younger users experience a greater sense of empowerment than do older ones on two of three Empowerment dimensions.
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). Those recipients with fewer providers in the past year (less turnover), whose provider lived with them, and who thought their authorized service hours were adequate, reported fewer unmet IADL service needs. A host of demographic and case mix characteristics (including number of ADL and IADL limitations) are related to number of unmet ADL needs, but age is not among them. With inclusion of demographics, case mix, and service experience in the Client Satisfaction equations, only the relationship between age and "service impact" remains statistically significant. This outcome dimension captures perceptions about the effect that in-home supportive services has on the ease of living inside and outside the home. When we compare "service impact" scores for those aged 65–74 and 75 and older (Table 4 ), differences between elderly subgroups are small.
When the same outcome equations were run again using the more complex coding scheme for age, the results were mixed. For one dimension of Empowerment (preferred role) and one of Satisfaction (service impact), comparisons between recipients aged 65–74 and 75 and older (respectively) and those under age 45 are not statistically significant, confirming the absence of significant group differences among elderly users on these outcomes, as noted in Table 4 . However, for another Empowerment dimension (service choice and satisfaction) and for one Unmet Need dimension (IADL), scores for the oldest-old are lower than those of younger users and the differences are statistically significant, whereas differences for those aged 65–74 are not. Recipients aged 75 and older in a consumer-directed model are less likely to experience choice in designing and implementing their supportive services and are less likely to report unmet IADL needs than younger elders.
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In interpreting these findings, the limitations of the sampling strategy must be considered. Because recipients with severe cognitive impairment were excluded from the study sample, these findings can tell us nothing about the experience of this subset of disabled people. Among all recipients in the IHSS program, those assessed as severely cognitively impaired represent 11.8% of those under age 65, 2.4% of those aged 65–74, and 5.4% of those aged 75 and older. Given that nonrespondents were older and had slightly poorer cognitive status, there are added reasons to be cautious in generalizing these findings to the very old (and others) with severe cognitive limitations. This is especially true because the program provides little or no additional support or resources to these recipients and relies heavily on families, friends, and community-based programs to implement and monitor services.
In light of these limitations, what do these results tell us about age as a determinant of client adaptation to and compatibility with a consumer-directed model of home-based services? Most obviously, the results are mixed. In this study population, age is important in some respects but not others. Although actual differences on service outcomes across age cohorts are not large, they are consistent in indicating that, on balance, older adults tend to be less enthusiastic about the experience of consumer direction than younger persons in the sample.
Results for reported unmet needs are less easy to interpret, in part due to the nature of the outcome measures. Self-assessed unmet need levels are a function of actual need levels, the efficacy of services to address them, and client attitudes toward the potential for meeting them. In this analysis, one predictor of unmet IADL need is age, with those 65 and older reporting fewer unmet needs. When data for a comparison group in the same program of other clients being served by home care agencies are examined (data not shown), there are similar, statistically significant differences between age groups. These similarities across service models suggest that the organization of services (i.e., the relative presence or absence of consumer direction) is probably less important than the age of the recipient in understanding unmet IADL needs. Also, because users under age 65 are (a) more likely to have replaced a provider and (b) more likely to find these hours insufficient despite receiving more paid hours, they may be more inclined to challenge program authority and more willing than older clients to make their dissatisfaction known. No age (or model) differences emerge for unmet ADL needs.
On most dimensions of client satisfaction with self-directed services, age differences have little effect on outcomes. For four dimensions of service satisfaction—technical quality of provider services, provider shortcomings, general satisfaction with services, and quality of the interpersonal relationship with the provider—there is no difference between younger and older recipients. Only on perceptions about service impact does age consistently matter. Younger recipients are more likely to report that provider services make their lives easier inside and outside the home. Because in this program recipients under age 65 have greater ADL needs, some of this difference may be a result of the more substantial benefits from personal assistance services experienced by those users most dependent on it. These differences between young and old could also result from what may be the lower expectations of disabled older persons about how easy life activities can become with advancing years, even with capable assistance.
Interpretation of these findings on service impact should take into account the context of this research. Study data are drawn from a survey of actual users of consumer-directed supportive services at home. These users receive little assistance from the IHSS program in dealing with the demands of hiring, training, and supervising their workers. In this context, it is apparent that younger people with disabilities on average embrace the experience of directing their own personal assistance services more enthusiastically than do older recipients. Younger users are also more likely to complain that their needs are not being met, notably their IADL needs, while older users are more satisfied with their current services. For younger users (who have more ADL needs), the conviction that they do not receive adequate authorized service hours probably underlies their concerns about unmet homemaker-chore (IADL) needs. Despite their perception of higher unmet needs, however, younger service users nonetheless report that services make more of a difference in their lives.
On the other hand, there are no statistically significant differences by age group on a majority of outcome measures, and even where differences meet this statistical standard, actual score differences are not large. This suggests that while consumer direction may be more appealing for younger recipients, older users embrace this model and are not much different from younger ones in implementing it. In another sense, these findings echo those of other scholars who have suggested that, at the least, a sizable minority of the elderly population is open to consumer direction and likely to make it work (
Eustis and Fischer 1992;
Simon-Rusinowitz et al. 1997). Our findings suggest that when assigned to a consumer-directed service arrangement, many older recipients (at least in one California program) receive the care they need on terms they can accept.
Others have argued that one socially determined barrier to the dissemination of consumer-directed models to elders is the lower expectations of professionals, family members, and elderly people themselves about the capacity of older persons to actively manage their own services and to benefit from these (
Simon-Rusinowitz and Hofland 1993). As suggested earlier, to the extent that this is accurate, it suggests another perspective on the findings from this study: Older recipients may not feel more empowered because they may expect relatively little from a more active role in the service relationship; older recipients may have fewer unmet needs because they feel they should be content with less and not complain; and older recipients may not experience service-related changes in their lives because, as they age, they may not expect to experience many benefits even from a helping relationship they have shaped.
Others have also suggested that the younger-old may more actively embrace consumer direction than the old-old (
Eustis and Fischer 1992), and our data provide some modest support for this. Differences between younger and older recipients on one empowerment measure (i.e., service choice and satisfaction) seem to be based primarily upon differences between elderly people aged 65–74 and those aged 75 and older. In this case, the younger-old look very much like those under age 65 in terms of their relative enthusiasm for consumer choice and its benefits. Differences on reported unmet IADL needs between the under and over 65 follow a similar pattern, suggesting either that providers somehow better meet the IADL needs of the older-old or that client expectations about what is required to meet homemaker-chore needs may become more modest as people age.
Rather than debating whether or not consumer direction is appropriate for older people, we should be asking under what conditions are specific groups most likely to succeed in this model. For example, this study indicates that in a program in which anyone may be hired as a paid worker, elderly users are most likely to hire family members and somewhat more likely to hire strangers. Younger disabled users, in contrast, are nearly as likely to hire friends as relatives. The preference of older people for hiring family providers may be due to choice (e.g., they are more comfortable with a family member) or circumstance (e.g., there are few friends or strangers to draw on; recruiting workers is perceived or experienced as more difficult; the pool of available family members, although smaller, is more available to hire for this kind of work; and/or family members perceive caring for an older person to be more legitimate than caring for someone younger).
Age differences in hiring family members become more salient when considered in light of "Independent Living" principles, the impetus for much of the recent growth in interest in consumer direction. Proponents of those principles typically argue that relying on family members (unpaid or paid) for supportive services undermines the independence of the consumer, because it may be difficult to supervise someone effectively when "blood ties" are involved. Thus, consumers may not be able to exercise their preferences and avoid dependency when service business and family relationships are blended. In this view, hiring workers with minimal personal ties reinforces the principles that the client is independent and that the provider is an employee of the client. Our findings suggest that hiring family members may be easier and more comfortable for consumers, especially older ones, particularly in a program that provides little hiring assistance to recipients. As consumer-directed programs become more common, it seems clear that older consumers want the option to hire family members with public funds, even as public policy debates about this continue (
Blaser 1998;
Simon-Rusinowitz, Mahoney, and Benjamin 1998).
Independent Living advocates and others have acknowledged the need to adapt the consumer-directed model in at least two ways: (1), to include guardians or surrogates to assist in managing services for those with severe cognitive limitations; and (2), to provide training and support to consumers who are new to consumer direction (
Sabatino and Litvak 1992). California's IHSS program accommodates surrogates who may be available for cognitively impaired clients, but it provides very little in the way of supportive services to clients, workers, or families encountering difficulty in implementing and sustaining consumer direction. Our experience with both older and younger clients suggests that this is the Achilles heel of this program. Older recipients may be especially vulnerable because they are more isolated socially, have fewer peers over time on whom they can rely, and may be separated geographically from family members. Specifically, our findings indicate that older recipients are less likely to have someone to turn to for advice and are less able to rely on informal or backup assistance from family and friends. The California program leaves much to chance as clients first become eligible for much-needed public services but then must chart their own course in locating a worker and implementing services. Recent efforts to establish worker registries in California counties are an overdue response to this issue.
Summary
Case managers, home care professionals, and others commonly argue that older persons face insuperable obstacles to managing their own supportive services. Our findings challenge this perspective and suggest that old age is far from an inevitable barrier to self-direction of supportive services in the home. Rather, aging with chronic health problems represents a set of opportunities and challenges that must be addressed as consumer-directed models become more common within long-term home care programs. One such challenge is to provide for the complex needs of those with severe cognitive impairments, whatever their age. The appeal of consumer direction seems broad and to involve relatively few important age distinctions. As a result, various federal and state agencies, foundations, and national aging organizations (e.g., the National Council on Aging and the National Association of State Units on Aging) are now actively engaged in developing planning and demonstration initiatives to extend consumer direction to elderly people. It is important to continue collecting and examining evidence about the experience and outcomes of self-directed services across the life span.
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Acknowledgments |
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Received for publication December 14, 2000. Accepted for publication May 22, 2001.
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