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Correspondence: Address correspondence to Randall Brown, Vice President, Mathematica Policy Research, Inc., P.O. Box 2393, Princeton, NJ 08543. E-mail: rbrown{at}mathematica-mpr.com
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Key Words: Cash and Counseling • Long-term care • Family caregivers • Medicaid
Home care agencies provide most of the paid supportive services that beneficiaries receive through Medicaid. If agency services are unsatisfactory, the burden to compensate likely falls to informal caregivers. In comparison, Cash and Counseling programs, which provide Medicaid beneficiaries with a monthly allowance to arrange their supportive services and hire workers as they see fit, could profoundly affect the informal caregivers who help beneficiaries most. Knowing whether those effects are for good or for ill is of great interest to policy makers, as many states, aided by federal Systems Change grants, seek to reduce nursing home placements.
Cash and Counseling has been implemented as a voluntary, randomized demonstration in three states. In this article we present estimates of program effects on primary informal caregivers (those providing the most unpaid assistance at baseline) from Arkansas's demonstration program, IndependentChoices. Earlier in the evaluation of IndependentChoices, we found that self-directing beneficiaries were more satisfied with their supportive services and reported fewer unmet needs than beneficiaries relying on agency services (Foster, Brown, Phillips, Schore, & Carlson, 2003).
Background
About 1.4 million Medicaid beneficiaries receive disability-related supportive services in their homes (Harrington & Kitchener, 2003). They typically receive services from home care agencies, under the direction of agency staff, but states are increasingly implementing consumer-directed options (O'Brien & Elias, 2004).
In Cash and Counseling, "consumers" receive a monthly allowance with which to hire workers—including relatives—and to purchase or save for home modifications, assistive devices, and care supplies. Consumers may designate a "representative," such as a relative or friend, to help them manage their responsibilities. They also receive counseling and fiscal assistance from the program. Cash and Counseling is meant to be adaptable to consumers of all ages and abilities.
Arkansas's IndependentChoices demonstration attracted mostly elderly, female beneficiaries with functional impairments, poor or fair health, and a heavy reliance on informal care (especially from adult daughters). The demonstration was open to adults who were eligible for benefits from the state's Medicaid personal care services (PCS) plan, including those who were also participating in Arkansas's home- and community-based services waiver programs, ElderChoices and Alternatives. (The Arkansas PCS plan typically provides up to 16 hr of weekly assistance with daily living activities from home care agencies. ElderChoices provides nurse-supervised homemaker, chore, and respite services to nursing-home-qualified elderly adults. Alternatives provides attendant care and environmental modifications to nonelderly adults and lets them choose and supervise caregivers.)
Prospective enrollees were told what their monthly allowance would be under IndependentChoices. The allowance, set at the amount Medicaid would expect to spend for the services in a beneficiary's personal care plan, was not large: $317 per month, on average, for the beneficiaries in our analytic sample. One fourth would receive about $200 or less per month, and one fourth would receive about $440 or more. Beneficiaries who chose to enroll completed a baseline telephone interview and were then randomly assigned to the treatment or control group. Control group members who were newly eligible for PCS received a list of home care agencies to contact about initiating services; other control group members continued relying on agencies as usual. Enrollment and random assignment began in December 1998 and continued until the evaluation target of 2,000 enrollees (about 9% of the state's PCS users) was met, in April 2001.
After random assignment, IndependentChoices counselors contacted treatment group consumers about developing plans for the monthly allowance. Consumers were required to keep receipts for all but incidental purchases, and nearly all consumers chose to have the program's fiscal agent manage their program account and payroll taxes. Counselors monitored consumers' satisfaction and safety through an initial home visit, monthly telephone calls, and semiannual reassessments. They also reviewed consumers' spending plans, receipts, and workers' time sheets. Consumers could consult program counselors about recruiting, training, and supervising workers (Schore & Phillips, 2004, describe program operations in detail).
Primary Informal Caregivers and Consumer-Directed Care
Our research bridges an extensive literature on informal caregiving and a more nascent one on consumer-directed care. It provides rigorous, empirical evidence on how an innovative model of paid support affects the lives of family caregivers.
The emotional, physical, and financial tolls of informal caregiving are well documented. According to a recent national survey, one third of caregivers for elderly adults describe caregiving as emotionally stressful, one sixth (15%) suffer physical or mental health problems as a result of caregiving, and half report that caregiving detracts from time spent with other family members (National Alliance for Caregiving & AARP, 2004). Compared with the general adult population, caregivers have higher rates of depression, self-reported stress symptoms, use of psychotropic drugs, and susceptibility to health problems (Council on Scientific Affairs, American Medical Association, 1993).
The literature also identifies a reciprocal relationship between the health status and quality of life of caregivers and care recipients. Caregivers of depressed elders report a poorer quality of life than do caregivers of elders who are not depressed (Sewitch, McCusker, Dendukuri, & Yaffe, 2004). The likelihood of caregiver attrition increases with the degree of care recipients' physical dependencies (Boaz & Muller, 1991). Caregivers of elders with dementia become more likely to institutionalize their care recipient if they rate their own burden as great and their health as poor (Gaugler, Kane, Kane, Clay, & Newcomer, 2003).
In light of the relationship between the well-being of care recipients and caregivers, and the relationship between caregiver burden and nursing home placement, the potential effects of consumer direction merit attention. Evidence is mounting that consumer direction benefits consumers (Benjamin, Matthias, & Franke, 2000; Foster et al., 2003). Do consumer benefits translate into caregiver benefits, or into greater caregiver strain? What are the mechanisms behind the gains or losses?
Under Cash and Counseling, consumers could change their PCS use in a number of ways. They could adjust the amount and timing of assistance provided by all or any of their paid and unpaid caregivers, as well as purchase assistive devices and home modifications. They could hire their choice of paid workers and designate a representative to help them manage their care. They could use the program's counseling and fiscal services to varying extents. These changes, in turn, could affect (a) the frequency, amount, and timing of assistance provided by primary informal caregivers; (b) the quality of relationships between care recipients and caregivers; (c) caregivers' satisfaction with their care recipients' PCS; and (d) caregivers' emotional, physical, and financial well-being.
These outcomes could be favorably affected if IndependentChoices consumers replaced unsatisfactory agency workers with workers whom they and their caregiver liked and trusted; began paying their primary informal caregiver, thereby acknowledging the value of the caregiver's assistance and reducing his or her financial burden; began paying others and required fewer hours of assistance from the caregiver; or purchased assistive devices that increased their own independence and eased the caregiver's physical strain.
Conversely, IndependentChoices could make matters worse for primary informal caregivers. Assuming the responsibilities of an agency worker could create emotional and physical stress. Becoming the paid employee of a loved one could strain familial relationships, as could continuing to provide unpaid assistance while others became paid. Serving as a consumer's program representative could be burdensome, especially if the program's counseling or fiscal services were inadequate.
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Methods |
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Estimation of Program Effects
We used logit models to estimate program effects on categorical outcomes, an ordered logit to estimate effects on caregivers' level of household income, and ordinary least squares models to estimate effects on the frequency and amount of assistance. The models controlled for characteristics measured during participants' baseline interviews (conducted from December 1998 to April 2001). These included care recipients' demographic characteristics, health and functioning, use of unpaid and paid supportive services, satisfaction with care and life, unmet needs, reasons for and month of enrollment, work and community activities, appointment (if any) of a representative to manage the monthly allowance, and use (if any) of a proxy respondent for all or most of the baseline survey. We also controlled for the familial relationship between care recipients and primary informal caregivers, and whether the caregivers were employed, interested in being paid for caregiving, and living with their care recipient, as reported by care recipients at baseline. In addition, we controlled for basic demographic characteristics of the caregivers, which we asked about during interviews with them.
Although nearly all of these characteristics were distributed similarly across demonstration participants in the treatment and control groups (as expected with random assignment), a few differences emerged within the subset of participants whose primary informal caregivers completed our caregiver survey. In particular, compared with treatment group members, control group members were more likely to report unmet needs for help with personal care (5 percentage points), but less likely not to have used any paid services or goods in the past week (3 percentage points). Among care recipients who did use paid services or goods, those in the control group were somewhat more likely (4 points) than those in the treatment group to be dissatisfied with their overall care. Finally, control group members were more likely than treatment group members to say their primary informal caregivers were interested in becoming paid workers (7 points). Our regression models controlled for these differences, as noted.
We constructed many of our outcome measures by converting responses to survey questions with 4- or 5-point scales (e.g., degree of satisfaction) into two alternative binary measures. One measure represented the most favorable rating (very satisfied), and the other an unfavorable rating (somewhat or very dissatisfied). We used this approach so readers could easily see the basis on which we drew inferences about the key questions for each outcome: Did consumer direction increase the proportion of highly satisfied caregivers, reduce the proportion of dissatisfied ones, or have both (or neither) effects?
With the exception of treatment–control differences in the amount of care provided (which were estimated with least squares regression), we measured program effects by using the estimated coefficients from the logit models to calculate the treatment–control difference in average predicted probabilities that the binary dependent variable took a value of 1 (Long & Freese, 2001). We report the p values of the estimated coefficients on the treatment status variable in our tables, and we used them to test whether treatment–control differences were significantly different from zero.
With 1,433 primary informal caregivers in the analysis sample, we had 80% power to detect fairly small program effects (6.6 percentage points for binary outcome variables with means of.50, assuming two-tailed tests at the.05 significance level; and 3.9 points for binary variables with means of.10 or.90). For the 643 live-in caregivers who reported the number of hours of (unpaid and paid) care they provided during a specific 2-week period, a continuous variable, we had 80% power to detect effects of 13.7 hr on total hours of care (about 9% of the mean), again assuming a two-tailed test at the.05 significance level.
Baseline Characteristics of Care Recipients and Their Primary Informal Caregivers
The demonstration participants who received assistance from the caregivers in our sample typically were White, female, and of limited education (Table 1). Almost half said they were in poor health, 70% could not use the toilet by themselves, and 40% were allotted more than 12 hr of care per week in their Medicaid PCS plans. About 33% (one third) of demonstration participants had one informal caregiver at baseline, and roughly the same proportions had two, or three or more. Of participants, 47% named a representative (quite possibly their primary informal caregiver) who would help them manage the allowance, and 53% were physically or cognitively unable to complete the baseline telephone interview and used a proxy respondent to do so. About 61% of elderly demonstration participants were enrolled in ElderChoices at baseline, but only 3% of the nonelderly participants were enrolled in Alternatives (not shown). Substantial minorities of participants were not receiving publicly funded home care at baseline (27%) or were dissatisfied with their overall care (19%).
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Results |
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Frequency, Amount, and Timing of Assistance
The caregivers of treatment group members (IndependentChoices consumers) provided assistance as frequently as control group caregivers did, but they provided somewhat fewer hours of assistance and did so at slightly different times. On average, caregivers in both groups provided care on 12 of the 14 days about which we asked (Table 2). During that time, control group caregivers provided about 117 hr of assistance, and treatment group caregivers provided about 107 hr, a mean difference of less than 1 hr per day. This overall impact was driven by a 13-hr treatment–control difference in the amount of care provided by the subset (57%) of the analysis participants who were live-in caregivers, including a 9-hr difference in the time those caregivers spent on activities that benefited the entire household, such as cleaning. In addition, treatment group caregivers were slightly less likely than their control group counterparts to provide care after 6 p.m. on weekdays.
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Emotional and Physical Well-Being and Satisfaction With Life
Compared with caregivers whose care recipients relied on agency services, those who assisted IndependentChoices consumers (a) were less likely to report that caregiving infringed on their personal lives, (b) enjoyed better emotional and physical well-being, and (c) felt more satisfied with life.
Smaller proportions of treatment group caregivers than of control group caregivers said caregiving interfered with their privacy (39% vs 53%; see Table 6) or with their free time and social lives (53% vs 64%). Compared with control group caregivers, those in the treatment group were less likely to report a great deal of emotional strain and more likely to report little or no strain. These improvements were accompanied by a modest reduction in the proportion of caregivers who said their care recipients required almost constant attention from them.
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Finally, treatment group caregivers were 11 percentage points more likely to be very satisfied, and 10 points less likely to be dissatisfied, with the way they were spending their own lives.
Caregivers Who Became Paid
The caregivers in our analysis provided substantial amounts of assistance to their care recipients. What factors determined whether they would be paid for some fraction of that care under IndependentChoices? Without empirical evidence on which to base hypotheses, we estimated the probability of becoming paid as a function of a fairly comprehensive set of care recipient and caregiver characteristics. (We excluded from the analysis the 50 caregivers who were married to their care recipients, because Arkansas prohibited the payment of spouses.)
Caregivers' sociodemographic characteristics and care recipients' needs-related characteristics counted most. Primary informal caregivers who were 40 or older or who had higher monthly household incomes were less likely than other caregivers to become paid workers, presumably because they had less need of additional income (Table 7). Female and married caregivers were more likely than their counterparts to become paid. Primary informal caregivers whose care recipients were allotted 7 hr or more of weekly care in their Medicaid personal care plans were more likely than others to become paid. Higher needs translated into larger monthly allowances with which to pay any caregivers, including those in our sample. In contrast, caregivers were significantly less likely to become paid if their care recipients lived alone or considered it important to have paid help at certain times of day. If care recipients had specific scheduling needs, then their primary informal caregivers would be unlikely to become paid unless they could accommodate those needs. Finally, care recipients who needed a program representative were less likely than others to pay their primary informal caregivers, as were care recipients who—because of physical or cognitive impairment—used a proxy respondent for the baseline interview. Caregivers who served as representatives could not also be paid workers, so they may have chosen the former role over the latter. Caregivers helping consumers who required a proxy respondent may have preferred that they use the allowance to hire workers to perform some stressful tasks, rather than be paid themselves (inferred from the finding, not shown, that caregivers of such care recipients were more likely than others to report that caregiving caused emotional stress and curbed free time and privacy).
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We also examined whether program effects on the amount of care provided may have stemmed from a payment effect. We found that treatment group caregivers who became paid workers provided care on more days than did control group caregivers, whereas those who did not become paid provided care on fewer days (Table 9). Again, we cannot infer that payment led to this difference, because caregivers who became paid may have been those who had helped most frequently in the first place. We also found that, among live-in caregivers, those in the treatment group provided fewer hours of care than did those in the control group regardless of whether they became paid workers. This relationship did not extend to visiting caregivers, however; visiting caregivers to treatment group members provided fewer hours of assistance than did visiting caregivers to control group members only if they remained unpaid.
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These findings support the premise that consumer direction would have a positive effect on Medicaid beneficiaries' primary informal caregivers. The observed reduction in live-in care hours (in itself a positive result) may suggest that, when care recipients started directing their own PCS, some of them hired workers, in part to ease the workloads of those who had been helping them most without pay. Providing slightly less care may have increased caregivers' free time and privacy and lessened their emotional and physical strain, as could hiring workers to perform tasks that caregivers considered physically or emotionally taxing. Purchases of assistive devices also may have helped reduce caregivers' physical strain. Lower financial strain may have stemmed from being hired as a worker, or from care recipients' using the monthly allowance to buy care supplies that their caregivers might have paid for previously. In addition, relatively small proportions of treatment group caregivers said caregiving hampered their performance or choice of jobs or caused emotional stress and worry; this fact may have stemmed from care recipients' hiring of workers whom they and their caregivers already knew personally and who were more reliable than agency workers.
Finally, our assessment of the effects of payment on caregiver outcomes suggests that primary informal caregivers who became paid workers (earning about $6/hr for 11 of the 55 hr of assistance they provided per week) may have derived substantial benefit from their change in status. Caregivers who remained unpaid also clearly benefited from consumer direction, but perhaps to a somewhat lesser extent, on average, than those who became paid. We cannot determine whether the reason for the larger estimated differences for those who became paid was due to their being paid, or to reasons that affected both their outcomes and the likelihood of becoming paid in the first place.
Study Limitations
This analysis was based on a randomized design and yielded estimated program effects that were quite large and consistent across numerous types of measures. Nonetheless, a few caveats are warranted about study duration, generalizability, possible reporting bias, care recipients' participation in other programs, and the desirability of additional data.
First, given the relatively short duration of our follow-up period, we do not know whether the positive effects observed for treatment group caregivers would persist. For example, if the reduction in care hours were not sustainable, if the gratification derived from getting paid for some of the care provided were to diminish, or if care recipients made service arrangements that were short term or unstable (say, by hiring young relatives who later went away to school), then improvements in the satisfaction and well-being of caregivers might deteriorate. Second, because our findings are based on a new consumer-directed program in one state, it may not be possible to generalize them to other programs in other states. Third, we cannot rule out the possibility that some treatment group members might have inflated reports on a few outcomes, such as their own health status, because IndependentChoices brought them other benefits and they wanted the program to continue.
Our estimated program effects also must be considered in light of the fact that 45% of the caregivers in our analysis were helping care recipients who participated in ElderChoices, a Medicaid home- and community-based services waiver program, during the evaluation follow-up. It is possible that the nurse supervision in ElderChoices led treatment group caregivers to feel more secure than they would have in the absence of that program. This would result in more favorable estimates of IndependentChoices' effects on stress than would be observed in states without such programs. In fact, the sensitivity tests we used to explore this hypothesis showed that, for all but two key outcomes, estimated effects were larger for caregivers whose care recipients did not participate in ElderChoices than they were for caregivers of participants (not shown). The larger impacts resulted from the combination of control group caregivers' having better outcomes if their care recipients participated in ElderChoices and treatment group caregivers' having worse outcomes. (Thus, it appears that ElderChoices was a boon to caregivers whose care recipients were relying on agency services, but not to caregivers of self-directing care recipients.) If a program like IndependentChoices were introduced in states without programs like ElderChoices, even larger caregiver effects might be expected.
Finally, having data on additional caregiver characteristics would have enriched our analysis. For example, data on caregivers' baseline health status and levels of strain would have enabled us to determine how IndependentChoices affected subgroups of caregivers defined by those characteristics. In addition, without such data, we have limited ability to assess the extent to which overall treatment–control differences were driven by the fact that more than half the treatment group caregivers became paid workers. Differences in the physical strain experienced by paid and unpaid treatment group caregivers, for example, may have been due more to differences in the two groups' baseline health status (or other unobserved characteristics) than to their payment status.
Implications for Policy Makers
As the federal government and various states seek to increase Medicaid beneficiaries' ability to live at home, attention should be directed to the burden society places on informal caregivers. Expanding the availability of home- and community-based services through federal Systems Change grants will likely benefit informal caregivers. Our results suggest that giving interested Medicaid beneficiaries more control over their supportive services could further ease caregiver burden. An option that would allow beneficiaries to direct the funds made available for home care under the new programs (as well as under the existing Medicaid program) might lead to even larger benefits for beneficiaries and informal caregivers, and might reduce the number of beneficiaries who are forced to enter nursing homes for want of sufficient services at home.
Companion Analyses
These policy implications are further illuminated by our analysis of Medicaid claims data. For a sample of Arkansas enrollees with 2 years' postenrollment claims data, Medicaid spending on nursing facilities and other long-term-care services was significantly lower (by about $1,057 in Year 2) for the treatment group than it was for the control group (Dale, Brown, Phillips, Schore, & Carlson, 2003). Ongoing analyses of claims data will provide more detail on the specific types of services affected, and on the size of program effects on nursing home admissions and other acute and long-term-care services paid for by Medicaid and Medicare.
In addition, we will assess the robustness and generalizability of the Arkansas findings on informal caregivers by comparing them with effects on caregivers in Florida and New Jersey, the two other study states. Meanwhile, Arkansas's IndependentChoices program seems to have greatly benefited not only Medicaid beneficiaries who sought more control over their personal care services, but also the family and friends who help them live independently for as long as possible.
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We thank reviewers from each of these organizations; external reviewers A. E. Benjamin, Rosalie Kane, and Robyn Stone; and numerous colleagues at Mathematica Policy Research for their valuable contributions to this article or to the Mathematica report from which it is drawn. We also thank the anonymous reviewers and editor of The Gerontologist for helpful comments.
1 Mathematica Policy Research, Princeton, NJ.
2 Co-principal Investigator, Seattle, WA.
Decision Editor: Linda S. Noelker, PhD
Received for publication August 2, 2004. Accepted for publication December 30, 2004.
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