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Correspondence: Address correspondence to Randall Brown, Senior Fellow and Project Director, Mathematica Policy Research, Inc., P.O. Box 2393, Princeton, NJ 08543. E-mail: rbrown{at}mathematica-mpr.com
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Abstract |
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Key Words: Personal care services • Paid caregivers • Caregiver burden • Cash and Counseling
Although consumer direction clearly benefits consumers, it is sustainable only if the workers they hire are satisfied with their experiences. The primary reason given by consumers for dropping out of a consumer-directed option is difficulty finding or retaining a worker (Schore & Phillips, 2004). Thus, it is critical to assess workers' experiences and well-being under the model and identify ways to address their concerns.
Because many of the workers hired under consumer direction are the consumers' friends or relatives, they may be vulnerable to the well-documented problems faced by both informal caregivers and home care workers (see discussion and references in Research Questions and Previous Research). Moreover, their problems may be exacerbated by the absence of agency support that other home care workers receive. For example, a hired family member may suffer injury because she or he did not receive proper training. Workers related to the consumer might find that being paid to care for a loved one creates difficulties in their relationship with the consumer or other family members. Alternatively, a personal bond with the consumer might make the hired worker's job more pleasant than that of an agency worker, and receiving pay may make the caregiver feel more appreciated.
Overview of the Cash and Counseling Demonstration
In this article, we use results from the first Cash and Counseling demonstration, Arkansas' IndependentChoices, to assess the experiences of workers hired under consumer direction. Cash and Counseling was implemented as a demonstration in Arkansas, Florida, and New Jersey to weigh the advantages and disadvantages of allowing Medicaid beneficiaries to direct their personal care (Phillips & Schneider, 2002). As one model of consumer-directed supportive services, Cash and Counseling deposits a fixed monthly allowance in spending accounts for program participants, which they can use to purchase disability-related goods and services (including hiring relatives as workers). The program also provides counseling and fiscal assistance to help them plan and manage their responsibilities, and allows them to designate representatives to make decisions on their behalf. These features make the model adaptable to consumers of all ages and with all types of impairments.
IndependentChoices was open to adults who were at least 18 years old and eligible for personal care services under the state's Medicaid plan. To receive Medicaid personal care services, an Arkansas resident must meet these three criteria: (a) be categorically eligible for Medicaid; (b) live in his or her own residence, or in a community-based residence, group or boarding home, or residential care facility; and (c) have physical dependency needs related to the activities of daily living and a physician's prescription for personal care. Enrollment and random assignment of those volunteering for the study began in December 1998 and continued until April 2001, when the evaluation target of 2,000 enrollees (about 11% of Arkansas personal care service users) was met. Although originally authorized as a demonstration program, IndependentChoices is now permanent.
Prospective enrollees were informed what their monthly allowance would be should they be assigned to the treatment group and choose to direct their own personal care services. Beneficiaries who enrolled completed a baseline telephone interview, after which they were randomly assigned to the treatment or control group. Control group members continued relying on agency services or, if newly eligible for Medicaid personal care services, received a list of home care agencies to contact about arranging services. Treatment group members worked with counselors from IndependentChoices to develop written plans for spending their allowances, which could be used to hire workers (except spouses or representatives) and to purchase other goods or services related to their needs, such as supplies, assistive devices, and home modifications. Program counselors monitored satisfaction, safety, and use of funds, and they could advise consumers about recruiting, training, and supervising workers.
Research Questions and Previous Research
Our goal in this article is to explore how hired workers fare under consumer direction, using the experiences of agency workers as a benchmark. We examine the following questions:
We know from previous research that about two thirds of consumers hired at least one family member under IndependentChoices (Dale, Brown, Phillips, Schore, & Carlson, 2003), and few hired strangers or agency aides (Phillips & Schneider, 2002). However, the experiences of the workers hired under IndependentChoices had not yet been studied.
The literature shows that many home care workers have emotionally and physically demanding jobs but receive low wages and few benefits or advancement opportunities (Stone & Wiener, 2001; Yamada, 2002). Although they find relationships with their clients rewarding and appreciate the flexible schedules, they often feel isolated from their supervisors and peers, lack authority to take initiative, and would like to have more information about their clients' conditions and care objectives (Eustis, Kane, & Fischer, 1993). However, these findings for home care workers, who are usually employed by agencies, may not apply to workers hired under consumer direction, many of whom are the consumers' close relatives or friends. Similarly, although the stress, depression, and health problems faced by unpaid caregivers are well documented (Council on Scientific Affairs, American Medical Association, 1993; National Alliance for Caregiving & AARP, 2004; Schulz & Beach, 1999), because they are paid, the workers hired under consumer direction may have outcomes different from those of unpaid caregivers.
To our knowledge, only one study, by Benjamin and Matthias (2004), assessed the experiences of workers hired under consumer direction in the United States. According to this study of California's In-Home Supportive Services (IHSS) program, relative to agency workers, workers hired under consumer direction (a) received 30% lower wages and were less likely to receive fringe benefits; (b) had closer relationships with their clients but experienced more emotional strain; (c) were less likely to report receiving training in personal care but more likely to report receiving informal training tailored to specific recipients; and (d) felt well informed about clients' needs. Finally, within the consumer-directed model, related workers were more likely to have good relationships with the beneficiaries, but they also experienced more emotional strain than did unrelated workers.
Although we examined measures similar to those in Benjamin and Matthias (2004), IndependentChoices and IHSS are somewhat different. First, under IHSS, individuals were more likely to be assigned to receive consumer-directed services if (a) they had severe disabilities (requiring more care hours), (b) needed paramedical assistance, or (c) were likely to be able to recruit workers. In contrast, under IndependentChoices, consumers volunteered for the demonstration and were randomly assigned to receive the cash allowance option or agency-directed care. Thus, the self-directed care recipients under IndependentChoices should be similar to control group consumers receiving agency care. Second, the maximum monthly benefit provided in the IHSS program, equivalent to 283 hr of care (9–10 hr/day), meant that a worker could be paid to provide many hours of care for a single consumer. In contrast, the maximum benefit provided under IndependentChoices (generally equivalent to 64 hr of care/month) was not large enough to fund a full-time job for the worker caring for a single consumer. Third, unlike IndependentChoices, the IHSS program did not include a counseling component. Fourth, the IHSS program allowed spouses to be hired, whereas IndependentChoices did not. Fifth, the two study environments were not the same, so, for example, the shortages of home care workers may have differed. Finally, consumers in the Cash and Counseling program had more flexibility in the use of their allowances (e.g., they could purchase other goods and services), which could affect workers' well-being.
The differences between the two programs could lead to differences in the workers' experiences, although it is difficult to predict how they would differ. For example, although hired workers experienced greater emotional stress than agency workers in the IHSS program, the discrepancy might even be worse under the IndependentChoices program because the allowance under IndependentChoices only covers a limited number of hours. Alternatively, IndependentChoices' counseling component might result in a greater difference between hired workers and agency workers in job satisfaction than was observed in the IHSS program, which had no such component.
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Methods |
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The final sample includes the 391 workers for treatment group members and 281 workers for control group members who responded to the survey. We refer to the primary paid workers for the treatment group as "directly hired workers," and to those for the control group as "agency workers." However, 1% of the workers for the control group said they were paid directly by the consumer (presumably through a private source), and another 1% were hired by the consumer through a Medicaid-waiver program, Alternatives, which allowed a beneficiary's relatives and friends to become certified, paid providers.
Our sample is a snapshot of workers providing paid care to consumers 9 months after their enrollment, so it excludes workers who may have been hired by the 33% of treatment group members who disenrolled from the program before then. About half the disenrollees died or became ineligible for personal care services or Medicaid; the remaining half chose to leave the program. Some who discontinued may have had problems with their workers, but the number of such cases is likely small. Only 4% of the treatment group sample (a quarter of the cases in which the consumer initiated disenrollment) left as a result of problems with employer responsibilities (Schore & Phillips, 2004).
Descriptive Measures
From the survey data, we constructed measures that describe the workers' characteristics and their experiences. In general, the measures describe only the experiences workers had while caring for the IndependentChoices' sample member. For many measures, we collapsed survey questions with 4-point scales into binary variables to simplify the presentation of results (Appendix Table A1). In general, we report the proportion of cases giving the most favorable rating (e.g., very satisfied).
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Characteristics of Consumers and Their Workers
Most consumers whose workers were surveyed were elderly, in poor health, and had unmet needs for care (Dale et al., 2003). Although directly hired and agency workers generally served beneficiaries with similar characteristics, 38% of the directly hired workers were serving consumers new to personal assistance services (i.e., consumers not receiving paid assistance at baseline), whereas only 21% of the agency workers served new consumers. This difference is due to the fact that control group members who were new applicants for personal assistance services were much less likely than were treatment group members to have paid caregivers by the time of the follow-up survey—44% versus 84%—and therefore did not have a worker who could be included in this sample. The difference appeared to be due primarily to a severe shortage of agency workers.
Most directly hired workers had been working for the sample member for about 6 months at the time of the paid-worker survey (not shown); many also had been providing care informally before the demonstration began. About two thirds of agency workers had been providing care to the control group consumer for 6 months or more.
Most consumers hired relatives and friends under IndependentChoices (Table 1). Specifically, 78% of directly hired workers were related to the consumer, and about 39% lived with the consumer at the time of the caregiver survey. Overall, 84% had provided unpaid help with routine health care, personal care, or household tasks before the demonstration began, and 45% had been the consumer's primary informal caregiver before the demonstration. As expected, very few agency workers (about 5%) were relatives of the consumers, lived with the consumer, or were the consumer's primary informal caregiver before the demonstration.
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Results |
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Compensation
Directly hired workers received an average hourly wage of $6.07, slightly (but significantly) less than the $6.30 average wage of agency workers (Table 2). However, because directly hired workers provided slightly more hours of paid care per week, the average earnings reported over the 2 weeks before interview were virtually identical for the two groups.
Very few directly hired workers received fringe benefits (2% vs 21% for agency workers). The low percentage of directly hired workers receiving fringe benefits is not surprising because small private employers seldom provide fringe benefits, especially to part-time employees. In contrast, agency workers usually care for more than one person and may work enough hours to be eligible for benefits, if offered. Among those who did not live with the consumer, 58% of agency workers, but only 6% of directly hired workers, were paid for their travel time. Finally, whereas more than one third of directly hired workers reported that their pay had ever been delayed, only 7% reported ever being paid less than they were owed (not shown).
Satisfaction With Working Conditions
Despite receiving modest (and sometimes late) pay and almost no fringe benefits, about 45% of directly hired workers reported being very satisfied with their wages and benefits; only 16% reported being dissatisfied (Appendix Table A1). In contrast, 22% of agency workers reported being very satisfied with their wages and fringe benefits, whereas 38% reported being dissatisfied. More than 80% of both types of workers reported being very satisfied with their working conditions.
Agency nurses periodically supervised agency workers in the home, whereas directly hired workers reported being supervised mainly by the consumers and their representatives or families. Despite this difference, about 85% of both directly hired workers and agency workers were satisfied with the supervision they received (Table 2). However, directly hired workers were more likely to be satisfied with feedback and less likely to report having been asked to do things to which they had not agreed.
More than 70% of workers in both groups were satisfied with the flexibility of their schedules, and few reported scheduling disagreements with their clients (Table 2). Finally, 53% of directly hired workers had to find backup care when they could not work; 19% reported having some difficulty arranging for it.
Training and Preparedness for Work
Directly hired workers were less likely than their agency counterparts to receive training. Only half the directly hired workers who provided routine health care reported receiving any health care training, compared with 95% of the agency workers providing such care (Table 3). Similarly, of those assisting with personal care, only about half the directly hired workers, but nearly all agency workers, received such training.
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Worker Well-Being
Both agency workers and directly hired workers reported enjoying positive relationships with the consumers. More than 90% of both groups reported getting along very well with the consumers. Further, 85% of directly hired workers and 55% of agency workers reported having very close relationships with them. About half the workers reported little or no physical strain, and less than 10% reported "a great deal of" physical strain as a result of their jobs (Table 4). Few were injured while providing care.
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Key Outcomes by Worker–Consumer Relationship
The levels of satisfaction with working conditions reported by directly hired workers varied with workers' relationship to the consumer and their living arrangements (Table 5). First, workers who lived with the consumer reported a higher level of emotional strain than those who did not. For example, half of live-in workers, but 67% of workers living apart from the consumer, reported having little or no emotional strain. Second, live-in workers were significantly more likely than workers living apart from the consumer to report desiring more respect from the consumer and more respect from the consumer's family and friends. The same pattern occurs when comparing related and unrelated workers—related ones were more likely to say the consumer's family and friends needed to show more respect. Unrelated directly hired workers reported levels of well-being similar to those of agency workers.
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Discussion |
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In general, our findings echo those for the IHSS program reported in Benjamin and Matthias (2004), though, because of differences in scales used, it is difficult to make exact comparisons. In both programs, compared with agency workers, workers under consumer direction (a) were less likely to receive formal training, but were more likely to feel they were well informed about their client's needs; (b) were more likely to feel close to the consumer but fared less well on measures of emotional well-being; (c) received less compensation and fewer fringe benefits (though wages were 30% lower than those of agency workers in the IHSS program, vs a gap in Arkansas of less than 4%); and (d) were highly satisfied with their working conditions.
The major difference from the IHSS results is that workers hired by consumers in IndependentChoices were more satisfied than agency workers with their compensation, whereas those hired by consumers in the IHSS program received substantially lower wages and were less satisfied than agency workers with pay and career opportunities. Dissatisfaction with wages may have been exacerbated by the fact that workers hired by consumers in the IHSS program worked more hours and were less likely to have another job than workers hired by consumers in IndependentChoices.
Although directly hired workers felt more emotional strain and lack of respect than did agency workers, this occurs not because consumers make poor employers but because most directly hired workers were closely related to and often lived with the consumer. Among directly hired workers, those related to the consumer were the most likely to feel emotional strain and to perceive a lack of respect. We found no differences between agency workers and nonrelated directly hired workers in the levels of emotional strain and lack of family respect.
Caring for close family members is more emotionally draining than is caring for friends or acquaintances, and family members who provide only unpaid care may resent the fact that another family member is being paid. This resentment may take the form of a lack of respect for the efforts of the paid worker. Live-in workers may have reported more emotional strain because they provided much more unpaid care, often at odd hours, and were essentially on call all hours of the day and night.
In this analysis, we could not determine whether the individuals who were hired under consumer direction would have felt lower levels of strain if they had not become paid workers. However, results of a companion study of IndependentChoices (Foster, Brown, Phillips, Schore, & Carlson, 2005) suggest that the greater strain felt by family members who became paid workers was not caused by their becoming paid workers. In fact, the primary unpaid caregivers at baseline who subsequently became paid workers suffered less emotional strain than did those who remained unpaid. More generally, although directly hired workers in our sample overall report more emotional strain than agency workers, they report less emotional strain than unpaid caregivers under IndependentChoices, and less than unpaid caregivers nationally (National Alliance for Caregiving & AARP, 2004).
Notably, directly hired workers (regardless of their relationship with their consumers) reported quite favorable perceptions of their working conditions. Most were very satisfied with their overall working conditions, the flexibility in their schedules, and the supervision they received. Most also reported getting along very well with their consumers. The fact that directly hired workers reported high levels of satisfaction with their working conditions, despite feelings of emotional strain, is consistent with the reports of workers hired under IndependentChoices who participated in focus groups. Many of those workers said that, although their jobs were demanding, they felt "blessed" by having the opportunity to care for a loved one, and they felt that their jobs were quite gratifying (Zacharias, 2002). Similarly, workers hired under consumer direction in the Netherlands reported quite positively about their relationships with beneficiaries and their work environments (Tilly, Wiener, & Cuellar, 2000). In other research, home care workers have reported that having close relationships with consumers and flexible schedules are appealing aspects of their job (Eustis et al., 1993), so it is not surprising that directly hired workers are quite satisfied with jobs that have these desirable characteristics.
Although directly hired workers were less likely than agency workers to receive fringe benefits and received slightly lower hourly wages, they were quite satisfied with their wages and fringe benefits (much more so than agency workers). Most directly hired workers had cared for their clients without pay prior to the demonstration and thus appreciated receiving some pay instead of none at all. Furthermore, because caregiving is a second job for many directly hired workers, their caregiving wages may be supplementing other income.
Despite the satisfaction that hired workers expressed with their work arrangements, their compensation, and their relationship with the care recipient, some concerns remain about the workers' well-being and willingness to continue in their roles over a longer period. States tended to take a hands-off position regarding paid workers hired under the program because the consumer was the official employer. The program's emphasis on consumer empowerment led states to avoid taking a more paternalistic approach toward consumers or the workers they hired. States also may have felt they did not have the resources to provide counseling assistance to both caregivers and care recipients. Nonetheless, a few proactive efforts could be made at little cost if program counselors and consultants viewed it as their responsibility to monitor the well-being of the hired workers as well as the consumers in a few key areas of concern.
One such concern is that few workers receive training in how to do their jobs, which could result in injury to either the consumer or the worker. Although the incidence of injury is no greater for directly hired workers than it is for agency workers (and no greater for treatment group than control group consumers), the incidence of such events might be reduced if counselors and consultants provided hired workers with educational materials. These materials could describe the safe performance of certain common tasks, such as helping care recipients bathe or get into or out of a bed or chair. Consumers also could use a portion of their allowances to pay for their workers to attend classes in caregiving offered by local community colleges. Such information might be particularly helpful if the hired worker takes on different types of assistance than he or she may have provided on an unpaid basis prior to becoming a paid caregiver.
The high level of emotional stress reported by some workers, although similar to that reported by unpaid family caregivers, also might be lessened at little cost to the state. Counselors could be informed of local caregiver support groups and sources of information (such as books, Web sites, or informational brochures) on how to deal with this stress, and then be trained to refer caregivers to them. Counselors also could apprise hired workers of possible sources of respite care and explain to consumers that their workers may need such care. They could then help interested consumers revise their spending plans to incorporate these care opportunities.
A third concern is that hired workers often feel that family members of the care recipient do not show enough respect for the work they do. The state could prepare materials (printed or videotaped), alerting both consumers and their families to this fact and suggesting ways to minimize such tensions. Providing such information to consumers and their families at the time a spending plan is developed might avoid this potentially debilitating and divisive situation that could affect the consumer's entire caregiving network. These guidelines could include suggestions about how entire families could constructively address common areas of contention or conflict.
This study is limited in that it pertains to one consumer-directed care program in one state, and it may not generalize to other states or other programs that have features different from those of IndependentChoices. For example, both the Florida and New Jersey Cash and Counseling programs allow spouses to serve as paid workers; Florida allows children to participate and cashes out other home- and community-based services in addition to personal care. Other states may have more generous personal assistance benefits than Arkansas does. We also note that our results describe the experiences only of those workers who were providing paid care to consumers at the time the consumer was interviewed, 9 months after enrolling in Cash and Counseling. Thus, the findings may not be representative of all workers ever hired by consumers in Cash and Counseling, and they do not necessarily reflect the satisfaction and strain levels that the interviewed workers would report if surveyed after more than 6 to 9 months in their paid caregiving role.
Despite these limitations, our results suggest that workers hired under consumer direction can be very satisfied with their experiences and do not suffer physical or emotional hardship beyond that of unpaid individuals providing similar care to relatives. Although consumer direction cannot eliminate the emotional strain on these hired workers, paying them for at least some of the care they are providing does not seem to exacerbate the tensions they face, and it perhaps alleviates them somewhat. These findings are bolstered by the fact that the experiences of workers hired under consumer direction in the IHSS program in California are largely consistent with the experiences of workers hired under IndependentChoices in Arkansas, even though the two programs are different. Future research will assess the robustness of these findings by comparing the experiences of paid workers from the Arkansas Cash and Counseling program with the experiences of paid workers in the two other demonstration states, Florida and New Jersey. These findings will be important for the 11 new states that have recently been selected for the next generation of Cash and Counseling programs, and for states that are adopting other consumer-direction programs.
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Footnotes |
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2 Co-principal Investigator, Seattle, WA.
Decision Editor: Linda S. Noelker, PhD
Received for publication August 2, 2004. Accepted for publication January 25, 2005.
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This article has been cited by other articles:
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  A. E. Benjamin, R. E. Matthias, K. Kietzman, and W. Furman Retention of Paid Related Caregivers: Who Stays and Who Leaves Home Care Careers? Gerontologist, July 1, 2008; 48(suppl_1): 104 - 113. [Abstract] [Full Text] [PDF]
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 J. Leece Paying the Piper and Calling the Tune: Power and the Direct Payment Relationship Br. J. Soc. Work, June 17, 2008; (2008) bcn085v1. [Abstract] [Full Text] [PDF]
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