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Correspondence: Address correspondence to Joshua M. Wiener, PhD, Senior Fellow and Program Director, Aging, Disability and Long-Term Care, RTI International, 701 13th Street NW, Suite 750, Washington, DC 20005-3967. E-mail: jwiener{at}rti.org
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Key Words: Home- and community-based services • Medicaid • Consumer direction
A major innovation in long-term care in the United States and Europe is the development of consumer-directed home care. These programs represent the opposite end of the management continuum from agency-directed services. These programs give consumers control over who provides services, when services are provided, and how services are delivered. Typically, consumer-directed programs allow the consumer to hire, train, supervise, and fire the home care worker. In some programs, beneficiaries receive cash payments enabling them to purchase the services they want. The goal of this article is to assess whether Medicaid beneficiaries receiving consumer-directed care in Washington State are more or less satisfied than those receiving agency-directed care.
Consumer-directed home care has slowly become an international policy trend. A number of other countries, including France, The Netherlands, the United Kingdom, Austria, and Germany, have implemented programs to give beneficiaries more control over their home care services (Cuellar & Wiener, 2000; Tilly, Wiener, & Cuellar, 2000; Wiener, Tilly, & Cuellar, 2003). In addition, a growing number of American states, including California, Michigan, Oregon, Washington, and Wisconsin, are incorporating consumer direction into their home care programs (Tilly & Wiener, 2001; Wiener, Tilly, & Alecxih, 2002).
The Centers for Medicare & Medicaid Services (CMS) promotes consumer-directed services through the Real Choice Systems Change Grants and the Independence Plus Initiative (O'Keeffe, Wiener, & Greene, 2005; Smith, 2002). In addition, the Office of the Assistant Secretary for Planning and Evaluation, CMS, and the Robert Wood Johnson Foundation sponsor Cash and Counseling demonstrations in Florida, Arkansas, New Jersey, and other states, which give Medicaid beneficiaries of all ages the opportunity to receive cash rather than service benefits (Dale, Brown, Phillips, Schore, & Carlson, 2003; Doty, 1998; Foster, Brown, Phillips, Schore, & Carlson, 2003; Phillips & Schneider, 2007).
Advocacy for consumer direction in the United States began during the 1970s with the independent living movement. Younger adults with disabilities demanded the right to receive and manage their own services in home and community settings to become part of mainstream society (Batavia, 1998, 2001, 2003; DeJong, Batavia, & McKnew, 1992). The movement rejects societal perceptions that individuals with disabilities are vulnerable and need protection (Simon-Rusinowitz & Hofland, 1993; Wiener & Sullivan, 1995). The independent living movement contends that people with disabilities have the ability and right to make the decisions about the services that affect their lives.
Although granting that consumer direction may work for some highly motivated, cognitively intact younger people, observers have noted that skeptics argue that older people with disabilities are too sick, too frail, too disabled, and often too cognitively impaired to take on the tasks of directing their own care, even with the help of surrogate decision makers (Benjamin, 2001; Kane, 1999; Tilly & Wiener, 2001). Opinion surveys have suggested that a significant minority of older people with disabilities are interested in consumer direction, although less so than younger people (Glickman, Stocker, & Caro, 1997; Simon-Rusinowitz et al., 1997). In fact, older people with disabilities participate extensively in consumer-directed programs, especially in state programs that have a long history with consumer direction, such as those in Oregon, Washington, Michigan, and Wisconsin. A recent survey of state units on aging and Medicaid directors identified 58 consumer-directed home care programs, of which 38% had started in the previous 5 years (Infeld, 2005).
Probably the most contentious issue surrounding consumer-directed home care services relates to whether quality of care is adequate (Benjamin, 2001; Tilly &Wiener, 2001). In addition, some have argued that consumers will be unable to arrange for backup assistance or manage emergencies. Compared with agency-directed care, consumer-directed services lack the standard quality-assurance structures of training of paraprofessionals, supervision by professionals, and provision of technical services by professionals. As a result, critics have contended that consumer-directed providers will be more likely to neglect and abuse beneficiaries of services (Benjamin, 2001).
In addition to health outcomes, one important component of quality of care is satisfaction with services. Satisfaction relates to how beneficiaries experience the care received compared to their standards or expectations (Linder-Peltz, 1982). Satisfaction measures can provide important information about interpersonal aspects of care, such as interactions and communication between providers and clients; clients' perceptions of how much providers respect, understand, and listen to them; and whether providers treat clients with dignity (Aharony & Strasser, 1993).
Although researchers now recognize satisfaction with care received at home as an important outcome (Geron et al., 2000), they know little about what factors affect satisfaction with a range of home care services, including personal assistance with activities of daily living (ADLs) and instrumental ADLs (IADLs). People who use home care and home health services typically report high levels of satisfaction (Geron et al., 2000; Office of the Inspector General, 1995), but previous research has found that the social desirability effect—the tendency of respondents to provide an answer they think interviewers want to hear—leads to reporting of high levels of satisfaction (Geron et al., 2000). High satisfaction ratings may also be related to clients' fears that negative ratings may result in an interruption of needed services.
In reviewing research on patient satisfaction, Aragon and Gesell (2003) acknowledged that no generally accepted theory of patient satisfaction has emerged in the published health care research. Geron and colleagues (2000) provided a detailed overview of the factors affecting overall satisfaction with health care and noted that few prior studies had specifically analyzed satisfaction with HCBS. In studying correlates of satisfaction with health care services, researchers usually examine demographic characteristics and health status.
A limited number of research studies have found that satisfaction with consumer-directed services, a major component of quality, is at least comparable to that for agency-directed services and may be higher. In a study of elderly Medicaid personal care beneficiaries in Maryland, Michigan, and Texas, respondents who reported that they had a great deal of choice consistently reported more satisfaction with their services than those without choice (Taylor, Leitman, & Barnett, 1991). Of the three states, however, only Michigan had a full consumer-directed home care program. A small study of younger clients of consumer-directed services in Virginia found that they reported higher satisfaction and greater work productivity than those receiving agency or informal services (Beatty, Richman, Tepper, & DeJong, 1998).
In a study of California's In-Home Supportive Services beneficiaries in the mid-1990s, consumer-directed respondents reported more satisfaction than agency-directed clients with their services and the freedom to select them; a stronger preference for managing services; higher perceived quality of care; and higher emotional, social, and physical well-being (Benjamin, Matthias, & Franke, 1998). Consumer-directed respondents also reported greater satisfaction with the providers' ability to assist them than did agency-directed respondents. Other differences in outcomes between the two groups were not significant. A limitation of the study was that agency-directed services were available in only 12 of the 58 counties in California, whereas consumer-directed services were available in all 58 counties. Within counties where there was a choice, there was a tendency for case managers to assign less disabled clients and clients believed to have difficulty recruiting a worker to agency-directed services; clients needing the paid worker to provide paramedical tasks or to drive a car were more likely to be assigned to consumer-directed services (Doty, Benjamin, Matthias, & Franke, 1999). The net effect of these decision factors was systematic differences in the characteristics of clients participating in the two service models. The study compensated for these differences through the use of controls in its multivariate analyses.
Finally, in a study of the Cash and Counseling demonstration program in Arkansas, Florida, and New Jersey, Medicaid consumer-directed beneficiaries reported much higher levels of satisfaction and much lower levels of dissatisfaction than beneficiaries receiving agency-directed services (Foster et al., 2003; Schore, Foster, & Phillips, 2007). Consumer-directed beneficiaries also reported that workers were more likely to complete tasks, more likely to arrive on time, and less likely to neglect the client or be rude or disrespectful. This finding was true for both younger adults with physical disabilities and older adults. The Cash and Counseling program was a voluntary demonstration project for people who were eligible for Medicaid personal care or HCBS waivers. Volunteers who were assigned to the treatment group received a monthly allowance that they could use to hire workers and to purchase other services or goods related to their needs, such as assistance devices and home modifications. Individuals assigned to the control group received regular agency-directed services. A limitation of the study was that it was a demonstration project and not an ongoing program fully integrated into the ongoing operations of the Arkansas, Florida, or New Jersey Medicaid programs. In addition, participants in the program were individuals who, by definition, were interested in directing their own care, so they may not have been representative of average Medicaid beneficiaries. Researchers used random assignment and statistical controls in the multivariate analyses to address selection bias.
The purpose of the present study was to add to the knowledge and debate about consumer-directed home care services by analyzing satisfaction with paid care in Washington State. Washington State has offered consumer-directed home care services as part of its Medicaid program for more than a decade and has integrated it into the mainstream of its service-delivery system (Wiener & Lutzky, 2001).
This study used a survey of Medicaid HCBS beneficiaries in Washington and Washington Medicaid administrative data. The analyses provided a profile of individuals receiving agency-directed and consumer-directed services and assessed whether, controlling for other factors through multivariate methods, individuals using consumer-directed services have higher or lower levels of satisfaction compared to those receiving agency-directed services. Because it is commonly believed that older adults and younger people with disabilities have different expectations, interest, and capabilities with regard to managing their own care, we analyzed the data for the sample as a whole and separately for older adults and younger individuals with physical disabilities.
As part of its long-standing commitment to a social model of long-term care, consumer-directed home care is not only a mainstream component of community-based services in Washington, it is the dominant model (Wiener et al., 2004; Wiener & Lutzky, 2001). More than half of Medicaid home care beneficiaries use consumer-directed home care rather than agencies. Under the Independent Provider option, the worker is a direct employee of the client, with the state assuming responsibility for paying workers and taxes. With assistance from the Area Agency on Aging case manager, the client is responsible for hiring, orienting, supervising, and finding replacements for the caregiver.
Local Area Agencies on Aging assess clients and work with beneficiaries to develop a care plan. In all parts of the state, clients in both the Medicaid personal care program and the HCBS waiver, known as the Community Options Program Entry System, have a choice of using licensed home care agencies or independent providers. This aspect of choice is a major difference between Washington's program and California's In-Home Supportive Services program (in which only some counties have both types of services and case managers make the decision; Doty et al., 1999) and the Cash and Counseling demonstration (in which demonstration volunteers are randomly assigned; Phillips & Schneider, 2007). Although abandoned a few years ago, a major factor shaping home care in Washington was a long-standing state policy that required clients who needed more than 112 hr of service per month to use independent providers. Devised principally as a cost-containment mechanism, the rule was intended to keep in-home per-person expenditures below 90% of the average cost of nursing facility care. Thus, the vast majority of heavy-care beneficiaries used consumer-directed care. In the late 1990s, in addition to virtually all those needing more than 112 hr per month in services, approximately 30% of beneficiaries below the cap chose consumer-directed services (Wiener & Lutzky, 2001).
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Methods |
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Washington State required consent by the Medicaid beneficiary in advance of being contacted by Mathematica Policy Research for the survey (Snell et al., 2005). The state mailed letters explaining the study to all people in the initial sample. Beneficiaries were asked to return an enclosed postcard within 2 weeks if they did not want to participate in the study. Of the 2,962 advance letters mailed, 510 were returned as nondeliverable and 738 clients returned postcards indicating that they did not want to participate in the study. The state did not allow the researchers to conduct follow-up on the nondeliverable letters. Washington then provided contact data for the remaining 1,714 cases to Mathematica Policy Research, which then selected the survey sample of 1,246 beneficiaries from the eligible cases. Mathematica Policy Research did not use the full 1,714 cases because it was more than needed to obtain the target number of respondents in Washington. The state drew the initial sample in November 2001 and provided Mathematica Policy Research with the sample willing to participate in March 2003, due to delays in obtaining state institutional review board approval and implementing the process by which potential respondents could opt out.
Data collection began in Washington in September 2003 and ended in June 2004. The survey was primarily conducted through telephone interviews using a Computer Assisted Telephone Interviewing system; there were also a few in-person interviews. Of the 1,246 Medicaid beneficiaries in the sample, 424 beneficiaries were ineligible, primarily because of death or admission to a nursing home. Of the 821 individuals remaining in the sample, 601 or 73% completed the survey.
Surveying impaired populations is difficult, and to ensure that the data collected were of high quality, study organizers used special modifications to survey design and procedures, including use of proxies, interviewer checkpoints, and fatigue and reinforcement probes. The survey respondents participated in the survey directly or via proxy (paid and unpaid caregivers); respondents included residents living in their own homes as well as in assisted living facilities and other group settings. Proxy respondents provided information on 14% of the sample.
The State of Washington's Department of Social and Health Services used administrative data to determine whether sample participants in the survey used the Independent Provider option during the sample period. The state found matching data for 599 of the 601 respondents (99.7%) and identified a total of 292 of the 599 individuals (49%) as participants in the Independent Provider option. For this study, which examined consumer satisfaction with paid home care, respondents were excluded if they had a proxy respondent who was also a paid caregiver as were a few respondents who had missing responses to underlying questions used to develop the satisfaction rating. These exclusions reduced the final sample to 513 respondents, including 232 individuals (45%) who used the consumer-directed option. Despite the challenges of implementing the survey in Washington, the final respondents closely matched the age distribution of the original 28,557-person sample frame, providing some support for the representativeness of the final sample. Fully 27% of nonelderly individuals with disabilities in the sample frame were younger than age 44 compared to 29% of nonelderly respondents to the survey, and 38% of the older adults in the sample frame were aged 75 to 84 compared to 39% of elderly respondents to the survey (Snell et al., 2005).
Statistical Methodology
We used both descriptive statistics and multivariate regression to analyze the data. In predicting satisfaction with personal care services, we estimated an ordinary least squares model that was right-censored at a scale value of 100 to account for the approximately half of all observations with that value (53% for the overall Washington sample, 46.5% for the sample younger than age 65, and 58% of the sample aged 65 and older). The shape of the distribution of the remaining part of the satisfaction scale allowed us to assume the properties of a normal distribution. We also estimated a survey-adjusted version of our model with probability weights and stratification that did not account for censoring, but we found that fewer demographic and health and functional status variables for which we had anticipated significant results were significant. The regression coefficients in this version of the model were smaller in absolute value because so many observations were clustered at 100. We estimated summary statistics using probability weights adjusted for nonresponse and poststratification, but we did not do so with the regression models because we estimated fully specified models.
We estimated three regressions on the dependent variable created to measure satisfaction: one regression for the overall analytic sample, one for the subgroup of respondents younger than age 65, and one for the subgroup of respondents aged 65 and older. The two populations were likely to differ in their outlook and in the services provided. Younger disabled adults may have had higher expectations of participating in the workforce and community life and subsequently might have been more demanding (less satisfied) than elderly respondents. Estimating satisfaction for these subgroups allowed us to account for these differences and determine whether levels of satisfaction differed between the two age groups. In each of these regressions, we included a dummy variable for receipt of consumer-directed care, which was the primary policy variable of interest. All other variables in the regressions served primarily as statistical controls to ensure that the results were not due to characteristics of the beneficiaries.
Dependent Variable
In order to examine satisfaction with paid care, we selected data from the larger study on a subsample of 2,325 self-respondents and unpaid caregiver proxies who provided responses to eight survey items. We used this data to construct the Satisfaction With Paid Personal Assistance Scale (SPPAS; Khatutsky, Anderson, & Wiener, 2006). Proxy respondents who were paid caregivers were not asked these questions and were not included in this analysis; proxy respondents who were not paid caregivers were included. These eight items, presented for Washington in Table 1, measured overall satisfaction as well as interpersonal aspects of care provided by paid helpers, such as communication with paid helper, how problems get resolved, how often paid caregivers get impatient or angry, and how well paid caregivers are trained.
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Independent Variables
We grouped independent variables into four domains:
HCBS Options
This domain included variables for whether the respondent participated in the consumer-directed option in Washington or in agency-directed care. We categorized individuals in residential care facilities, such as assisted living facilities, as receiving agency-directed services because that setting is analogous to receiving care from an agency in that individuals do not hire, train, direct, or fire the workers who provide their care. We also included whether beneficiaries received Medicaid state plan personal care.
Demographic Characteristics
Demographic characteristics of beneficiaries included age, gender, and race. Under this domain, we also included a variable to indicate when care recipients and paid caregivers had matching race. We did not include income as a variable because all survey respondents were very low income Medicaid beneficiaries, and this would have resulted in little variation.
Self-Reported Health and Functional Status
This domain included self-reported health status, number of limitations in six ADLs (bathing, dressing, eating, transferring, walking across the room, and toileting), and number of limitations in four IADLs (cooking, managing medications, shopping, and doing light housework). We created a composite of 10 items that asked about unmet needs for ADL and IADL assistance, a count variable ranging from 0 to 10. Additional health status indicators included prior nursing home use, recent pain or pressure sores, and bladder/bowel incontinence. We used a variable for proxy survey respondent to control for cognitive impairment in the sample population.
Social Characteristics and Residence
This domain included a variable for social involvement and participation, and a variable for living in a group setting such as an assisted living facility or an adult foster home.
Of the independent variables used in regressions, we imputed self-reported health status (excellent, very good/good, and fair/poor) based on survey respondents' ADL impairment for about 1% of the total sample for which data were missing.
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Although most of the satisfaction ratings appeared similar for those with consumer-directed and agency-directed care, there were some differences. Individuals with consumer-directed care were more likely than those with agency-directed care to report being very happy with their care and to have workers who were well trained, and they were less likely to report having difficulty getting problems fixed.
Table 2 lists the variables used in the multivariate analyses and their means for all survey respondents in Washington and for survey respondents younger than age 65 and aged 65 and older. A total of 45% of respondents used consumer-directed care, with 54% of younger individuals with disabilities and 38% of older clients using this service option.
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The descriptive analysis provides important new information on who does and does not choose consumer-directed home care. First, scholars have sometimes argued that consumer-directed home care is primarily for younger individuals with disabilities and that older adults are not interested. In Washington, although younger people with disabilities were more likely than older people to choose that option, 38% of older Medicaid HCBS beneficiaries (compared to 54% of the younger population) chose consumer direction, a very substantial minority.
Second, some observers have contended that consumer direction is primarily for people with modest disabilities and that people with substantial disabilities are too sick, too functionally impaired, or too weak to take on these responsibilities. Contrary to these expectations, among the total sample, as well as among younger individuals with disabilities and older beneficiaries, individuals using consumer-directed services were, on average, substantially more disabled and much more likely to rate their health as fair or poor. Some of this differential may be a residual effect of the earlier state policy that required those needing a high level of service to use consumer direction.
Third, within Washington, elderly Asians were much more likely to choose consumer-directed home care over agency-directed care. The ability to hire relatives or friends provided by the Independent Provider option may provide a mechanism for older Asians to ensure that they receive care from a person who understands their cultural traditions, language, and preferences. Indeed, as an indicator of that motivation, overall, consumer-directed beneficiaries were more likely than agency-directed beneficiaries to have caregivers of the same race as the client. This finding is consistent with a study by Sciegaj, Capitman, and Kyriacou (2004) that found variation across ethnic groups in preferences for consumer control, with Chinese Americans more interested in consumer-directed care than African American, Latino American, and Western European American elders.
The multivariate analyses addressed the question of whether people using consumer-directed home care were more satisfied with their care than people using agency-directed services, controlling for a number of factors. For the overall sample, there was no statistically significant difference in the level of satisfaction between people using the two types of care. Recall that beneficiaries chose the type of care that they preferred, although more disabled users were more likely to be guided toward consumer-directed care because more hours of service were available because Medicaid payment rates for consumer-directed care are lower than those for agency-based care. Thus, contrary to the fears of some observers, the quality of consumer-directed home care was no worse than that of agency-directed home care, at least by one important measure. One speculative reason for the lack of difference is that home care agencies, faced with years of competition from consumer-directed care, have modified their practices to give consumers more control and choice.
These findings are generally consistent with the results of the evaluations of California's In-Home Supportive Services program (Benjamin et al., 1998) and the Cash and Counseling demonstration (Carlson, Foster, Dale, & Brown, 2007; Foster et al., 2003), which found no evidence that satisfaction with consumer-directed care is statistically inferior to that of agency-directed care. However, these other studies generally found that consumer-directed programs had higher levels of satisfaction than did agency-directed care, whereas our study found only that there was no difference in satisfaction between the two types of care when examining the sample as a whole.
The results of the subgroup analyses were surprising. Because consumer direction is strongly identified with younger people with disabilities and their advocates, and they are most vocal in their support for consumer-directed care, we expected that younger people with disabilities would be the group with the strongest difference in satisfaction between the two types of care. Similarly, experts have sometimes argued that older people are not interested in or capable of engaging in consumer-directed care and prefer to delegate those tasks to agencies. Contrary to expectations, for younger individuals with disabilities, there was no statistically significant difference in satisfaction between consumer-directed home care and agency-directed care, but there was a large and statistically significant difference in older people's favoring of consumer direction. One possible hypothesis to explain this difference is that individuals younger than age 65 who used non-family/friends as independent providers had lower satisfaction scores than did similar individuals in the older population. Although this might be the case, there were not enough younger individuals with disabilities using non-family/friends to substantially reduce the overall satisfaction scores (analysis not shown).
These results differ somewhat from the findings of California's In-Home Supportive Services system by Benjamin and Matthias (2001), who found that age differences have little effect on client satisfaction, although older adults tended to be less enthusiastic about the experience of consumer direction than younger individuals in their sample. In addition, the evaluation of the Cash and Counseling demonstration found that consumer-directed care was consistently rated higher than agency-directed care by all age groups (Carlson et al., 2007). These differences may be partly explained by the fact that all of these studies are state specific, and consumer-directed programs vary across states. Consumers are also not uniform and may respond differently to the same program.
However, we found that despite high overall use of consumer-directed services in Washington, younger people with disabilities were more likely to use consumer-directed home care than were older people (54% vs 38%, respectively). This finding is consistent with research that has found that younger people with disabilities are more interested in the concept of consumer direction than are older people (Desmond et al., 2001; Glickman et al., 1997; Mahoney et al., 1998, 2002).
This study adds to the small, but growing, literature on consumer-directed home care and Medicaid HCBS. Like all studies, it has limitations. First, the study was limited to Medicaid beneficiaries in Washington, and researchers cannot necessarily generalize its results to the national population of Medicaid beneficiaries receiving HCBS or to the overall population of people with disabilities. We chose Washington because it has a well-developed system of HCBS and a long history of offering HCBS, and it was able to match state administrative data to provide a clear measure of consumer direction.
Second, satisfaction is an important indicator of quality of HCBS. Because it is subjective, however, it is susceptible to cultural norms and expectations, making it difficult to measure reliably. Measuring satisfaction with home-based care is also prone to response bias, as well as cultural and cohort differences (Geron et al., 2000). As is the case in many studies, the satisfaction levels reported here were very high. In particular, Medicaid beneficiaries may have feared loss of service, punishment of the provider, or retribution from the paid caregiver if they reported low levels of consumer satisfaction. Nonetheless, satisfaction measures an important dimension of quality of care and is often used to assess services in a number of settings.
Third, conducting the survey was a challenge. Washington's institutional review board imposed requirements that the other states in the survey did not and that reduced the response rate. The state's procedures did not allow us to follow up with the sample members whose advance letters were returned as nondeliverable, and the provision of a postcard by which potential sample members could indicate that they did not want to participate in the survey resulted in a far higher refusal rate than that in the other five states surveyed. Although analysis of the age distribution suggests that the final sample was representative of the sample frame, we acknowledge the possibility of potential unobserved bias.
States, CMS, and consumer advocates promote the use of consumer-directed HCBS as a way to empower consumers and craft services that better meet their needs. Skeptics argue that the quality of care in consumer-directed programs is inadequate. This study supports the premise that consumer satisfaction, an important measure of quality, in consumer-directed home care is not inferior to that in agency-directed care. The positive effect of consumer direction for older people supports the notion that this service option should be available to all individuals who want it.
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1 Aging, Disability and Long-Term Care Program, RTI International, Washington, DC, Research Triangle Park, NC, and Waltham, MA.
Decision Editor: Linda S. Noelker, PhD
Received for publication July 5, 2006. Accepted for publication March 30, 2007.
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