Abstract

Longitudinal impacts of a consumer-directed support program that provides families with an individualized budget were studied at three points in time over a 9-year period: Time 1 (1991), Time 2 (1995), and Time 3 (2000). At Time 3, families in the program were also compared with families on the waiting list. Over time, families in the program experienced decreased unmet service needs, higher service satisfaction, increased community participation of individuals with disabilities, and decreased caregiver burden. At Time 3 families in the program had fewer unmet needs and higher service satisfaction than did families on the waiting list; there were no differences in community participation and caregiver burden.

Over the past decade, greater control of long-term services and supports has shifted towards individuals with disabilities and their families. Various terms have emerged across the disability community and internationally to describe this type of service delivery (e.g., self-determination, self-directed supports, direct payments) and the term selected for this article, consumer-directed supports. A continuum of various models has also emerged in practice. However, across terminology and models, common elements include individualized planning and funding sources that increase flexibility, including the ability to select and manage providers of supports and services (Powers, Sowers, & Singer, 2006). At the heart of consumer-directed supports are fundamental shifts in authority, accountability, and control of financial resources. Most often this has occurred through cash allowances or individualized budgets with the use of fiscal intermediaries.

Roots of consumer direction within the United States can be traced as far back as initial responses to disability within early American colonies and states (Braddock & Parish, 2001; Ferguson, 2004). In what may be considered one of the earliest family support programs, in 1793, a Kentucky program provided annual cash allowances of approximately $50 to $75 to families with relatives who had intellectual and mental disabilities (Estabrook, 1928; Wolfensberger, 1975). Other roots of consumer-directed supports can be traced back at least 40 years in programs within the Veteran's Administration (Tritz, 2005). However, the independent living movement, founded by Ed Roberts and other activists in the 1970s, has been a revolutionary force of advocacy towards greater consumer control (DeJong, Batavia, & McKnew, 1992). During the last decade, this philosophy has come to fruition with developments such as the Robert Wood Johnson Cash and Counseling demonstration projects and Independence Plus initiative, which have catalyzed the development of new consumer-directed programs across disability and age groups (Crowley, 2003).

Given the recent emergence of consumer-directed supports, research on outcomes of such service models has been mostly limited to small-scale state initiatives and demonstration projects, such as the Cash and Counseling demonstrations. The National Council on Disability (2004) and Powers et al. (2006) have synthesized research findings on outcomes. Most of the research was focused primarily on individuals with physical disabilities, and researchers have most often compared consumer-directed options with traditional agency-directed services (National Council on Disability, 2004). The most frequently reported finding is greater service satisfaction with consumer direction (Beatty, Richmond, Tepper, & DeJong, 1998; Benjamin, Franke, Matthias, & Park, 1999; Benjamin & Matthias, 2001; Benjamin, Matthias, & Franke, 2000; Carlson et al., 2005; Doty, Kasper, & Litvak, 1996; Foster, Brown, Phillips, Schore, & Carlson, 2003). Researchers have also reported fewer unmet service needs as an outcome (Benjamin & Matthias, 2001; Benjamin et al., 2000; Carlson et al., 2005; Foster et al., 2003). In general, researchers have found no major differences in safety or health status; however, some findings indicate preventative and disability-related health benefits (Beatty et al., 1998; Carlson et al., 2005; Foster et al., 2003; Foster et al., 2004). Some researchers have also reported psychological benefits concerning feelings of empowerment (Beatty et al, 1998) and perceived quality of life of individuals with disabilities (Carlson et al., 2005; Foster et al., 2003).

Few researchers have evaluated consumer-directed programs within a family perspective that incorporates outcomes for family caregivers (National Council on Disability, 2004). There appear to be key links between consumer-directed supports and family support (Simon-Rusinowitz, Mahoney, Loughlin, & Sadler, 2005). First, some programs have specifically targeted families. In the 1980s, family support programs for those with relatives who have developmental disabilities emerged in several states that adopted cash subsidies or individualized budgets (Agosta & Bradley, 1985; Agosta & Melda, 1995). These programs targeted the needs of the family as a whole, embraced flexibility, and were often established with goals of reducing undesirable and more costly institutional placements. Currently, 22 consumer-directed family support programs exist in the United States, and an increase has been observed in programs serving families with adult relatives who have developmental disabilities and are living at home (Rizzolo, Hemp, & Braddock, 2006). Similarly, consumer-directed programs that target the needs of family caregivers have also emerged within the aging service system, most notably through the National Family Caregiver Support Program under the Older Americans Act (Feinberg & Newman, 2005).

A second way consumer direction is linked with family support concerns hiring family members. Flexibility in hiring, including the ability to hire family, is a key determinant of interest in consumer direction (Mahoney, Desmond, Simon-Rusinowitz, Loughlin, & Squillance, 2002; Simon-Rusinowitz et al., 1997; Simon-Rusinowitz et al., 2001). In one survey of consumer-directed programs in the United States, Doty and Flanagan (2002) identified 139 programs and reported that 80% permitted hiring family. In perhaps the largest and most established program in the country, California's In Home Supportive Services program, nearly half of all paid employees were family members (Benjamin et al., 1999). Furthermore, in the Cash and Counseling demonstration projects, approximately 58% to 78% of workers hired across the three original sites (Arkansas, New Jersey, and Florida) were relatives, and 80% of hired workers had previously provided some level of unpaid care to the individual (Dale, Brown, Phillips, & Carlson, 2005).

Researchers who have explored impacts on family caregivers have found many benefits that appear to strengthen existing networks of informal supports. Early investigators examining cash subsidy family support programs for children with developmental disabilities reported outcomes of decreased caregiver stress–particularly family financial stress, enhanced caregiver life satisfaction, increased service satisfaction, and decreased anticipation of needing out-of-home placement (Herman, 1991, 1994; Meyers & Marcenko, 1989; Zimmerman, 1984). Although many of these studies were limited in that they did not have a randomized design and comparison group, findings from other more rigorous studies have supported similar positive outcomes. Compared with a randomly selected comparison group, family caregivers of individuals in the Cash and Counseling demonstrations were less likely to report high levels of physical and financial strain (Foster, Brown, Phillips, & Carlson, 2005a, 2005b, 2005c). They were also less likely to report that caregiving negatively impacted their privacy, social lives, and job performance. They reported greater satisfaction with services and greater life satisfaction. Although these findings were consistent across all three sites (Arkansas, New Jersey, and Florida), findings from the Florida site are particularly relevant to the current review because this site targeted children and adults with developmental disabilities.

We have also adopted a family perspective on consumer-direction in research conducted on the Illinois Home Based Support Services Program. Compared with families on the waiting list, those involved in the program have had many positive outcomes over a 4-year period: greater service satisfaction, decreased unmet service needs, and more community participation of individuals with developmental disabilities (Heller, Miller, & Hsieh, 1999). Although families did not report a significant decrease in caregiving burden, families receiving consumer-directed services reported a decreased desire for out-of-home placement (Heller et al., 1999). In an earlier study we examined actual placement data over an 8-year period (Heller & Caldwell, 2005) and found that out-of-home placements, particularly to nursing homes and institutional placements, were much less likely to occur for adults in the consumer-directed programs. Greater control of respite services through the program was associated with greater employment of mothers (Caldwell & Heller, 2003). In addition, compared with families on the waiting list, caregivers in the program reported fewer out-of-pocket disability expenses, greater access to healthcare, engagement in more social activities, greater leisure satisfaction, and better mental health for lower income caregivers (Caldwell, 2006).

However, with the exception of the study on out-of-home placements (Heller & Caldwell, 2005), little is known about long-term outcomes of consumer-directed supports for adults with developmental disabilities and their families. Most research on consumer direction has been cross-sectional or conducted over relatively short periods of time following entry into such programs. Long-range longitudinal research is needed to assess whether initial impacts are sustained over time and whether there are additional benefits from extended participation. For example, it may be possible that some benefits are not sustained over time while other benefits, such as decreased caregiving burden, manifest themselves over a longer period of time. Therefore, in the current study we explored the 9-year outcomes of a consumer-directed support program. Specifically, based on previous research, we made the following hypotheses: (a) Among participants in the consumer-directed program, there will be decreases in unmet service needs, increases in service satisfaction, and increases in community participation of individuals with developmental disabilities from baseline to 4 years later. These outcomes will be sustained in the 9-year follow-up. (b) Among participants in the consumer-directed program, caregiving burden will decrease between baseline and 9 years of the program, and (c) compared with families on the waiting list, at the 9-year follow-up participants in the consumer-directed program will have fewer unmet services needs, higher service satisfaction, lower caregiving burden, and greater community participation of adults with developmental disabilities.

Method

Illinois Home Based Support Services Program

The Illinois Home Based Support Services Program provides an individualized budget of approximately $1,656 (3 × Supplemental Security Income) per month. The program originated as a state-funded program and initially targeted individuals with severe intellectual disabilities, autism, cerebral palsy, or multiple impairments living at home with family. Individuals with disabilities and their families develop a plan with the assistance of a service facilitator and decide what services and supports are purchased. The state serves as the fiscal agent. Frequently used services have included respite, personal assistance services, home modifications, assistive technology, employment services, social/recreational services, therapies, and transportation (Heller et al., 1999). Selection for the program has been based on a lottery from all applicants on the waiting list. This random selection process has made the program ideal for research comparing families in the program with families on the waiting list.

During the study period, the program was state-funded and flexible in terms of what families could purchase. In 2002, the program was converted to utilize 1915c Medicaid Home and Community Based Services Waiver funding (Caldwell, 2006). This resulted in several significant changes, some due to Medicaid regulations: Restrictions on severity of disability no longer applied, the program served the broader population of individuals with developmental disabilities qualifying for the Waiver, and more restrictions were placed on spending. Since the conversion to Medicaid, families have lost flexibility in spending for most recreational services, and limits were placed on therapies and medical services outside of traditional Medicaid. Also, the state decided to require families to pay for developmental training services from their budget, which significantly reduced money available for other services. Further, during the period of this study, primary family caregivers were discouraged from becoming paid caregivers. Since the conversion to Medicaid, approximately half of primary family caregivers have become paid caregivers for some hours of support. It appears many families have done this to retain the original flexibility of the program. Although these changes took place outside the time frame of this study (1991–2000), they are important to discuss for a better understanding of the current program.

Sample

The longitudinal sample consisted of 38 families in the program, surveyed at three points in time, and a comparison group of 49 families on the waiting list, surveyed at Time 3. Families in the program were surveyed over a 9-year period: Time 1 (1991: baseline entry into program), Time 2 (1995: 4 years after entry into the program), and Time 3 (2000: 9 years after entry into the program). When the program began, the Illinois Department of Human Services randomly selected participants from 1,729 applicants. The Time 1 sample consisted of 135 families in the Home Based Support Services Program who were randomly selected and completed surveys prior to entering the program. As a point of clarification, this included families reported in Heller et al. (1999) and a second wave of baseline families that entered the program within the first year. At Time 2, 106 of these 135 families returned surveys (79% response rate). At Time 3, 41 of the remaining sample of 106 families returned surveys (39% response rate).

All surveys were conducted through the mail, and survey respondents were primary caregivers of individuals with developmental disabilities. From Time 1 to Time 3, the primary caregiver for 3 families shifted from a parent to a sibling. In order to maintain consistency of respondents, these families were excluded, leaving a final longitudinal sample of 38 families in the program. We used chi-square and t tests to compare Time 1 demographics of these 38 families with those of the attrition group of 97 families (Table I). Family caregivers in the longitudinal sample (M age = 54.57 years, SD = 8.02) were significantly younger than families in the attrition group (M age = 61.30 years, SD = 12.03, t(127) = 3.70, p < .01. The mean age of the total group was 59.37 years (SD = 11.42). Similarly, individuals with developmental disabilities in the longitudinal sample (M age = 28.37 years, SD = 6.38) were significantly younger than individuals in the attrition group (M age = 33.35 years, SD = 9.60), t(132) = 3.50, p < .01. Also, the longitudinal sample consisted of a higher percentage of primary caregivers who were mothers, χ2 (1, N = 135) = 5.42, p < .05.

Table 1

Demographics of Longitudinal Sample and Attrition at Time 1

Demographics of Longitudinal Sample and Attrition at Time 1
Demographics of Longitudinal Sample and Attrition at Time 1

A comparison group of 49 families on the waiting list for the program was also recruited at Time 3. Although these families were not in the program, the majority of them were likely receiving some limited services. In order to be on the waiting list, individuals must be living at the family residence and not in a group home, Intermediate Care Facility/Mental Retardation (ICF/MR), or other residential setting. However, families on the waiting list may have been receiving day program services, respite services, therapies, and/or other services provided through traditional Medicaid and general revenue funds. Also, it is likely that many families had purchased services out-of-pocket. In another study on the Home Based Support Services Program, we found that families on the waiting list were spending an average of $5,358.60 a year on out-of-pocket, disability-related expenses, with the highest amount spent on respite and personal assistance services (Caldwell, 2006).

We randomly selected 234 from among the 3,424 families on the program waiting list; 49 families returned surveys (21% response rate). Time 3 demographics of families in the program were compared with families on the waiting list using chi square and t tests (see Table 2). Family caregivers in the program were significantly older than families on the waiting list (M ages = 63.87 years, SD = 8.94, and 52.79, SD = 9.53, respectively), t(83) = −5.43, p < .01. Similarly, individuals with developmental disabilities in the program were significantly older than those whose families were on the waiting list (M ages = 36.59 years, SD = 6.38, and 27.78, SD = 9.16, respectively), t(83) =−5.02, p < .01.

Table 2

Demographics by Group at Time 3

Demographics by Group at Time 3
Demographics by Group at Time 3

Outcome Measures

Unmet service needs

A modified version of the Family Support Index (Heller & Factor, 1993; Heller et al., 1999) was used to measure unmet service needs. This index included a list of 28 common types of services used by individuals with disabilities and families. Families were asked whether they used each service. If families were not using a service, they were asked whether they needed it. Unmet needs for each service were totaled.

Service satisfaction

Service satisfaction consisted of five items (Heller et al., 1999). Examples of these items are: “To what degree do you get the kind of services you want?” and “In an overall sense, how satisfied are you with the services you receive?” A 5-point scale was used for each item, from 1 (not at all) to 5 (very much). The alpha reliability of the scale for the total sample at Time 3 was .96.

Community participation of individuals with developmental disabilities

Community participation was measured using the Community Integration Scale (Heller & Factor, 1991), which measures frequency of participation in eight common community activities. Examples of activities include going to movies, concerts, sports events; and restaurants or bars as well as visiting with friends. For each activity respondents indicated frequency of participation on a 6-point scale from 1 (not at all) to 6 (daily). The alpha reliability of the scale for the total sample at Time 3 was .66.

Caregiving burden

The caregiving burden scale consisted of nine statements about the effects of caring for a relative with developmental disabilities on job opportunities, finances, future worry, personal time, social opportunities for leisure, and caregiver's marriage (Heller, Markwardt, Rowitz, & Farber, 1994). Each statement was rated from 1 (strongly disagree) to 4 (strongly agree), with a higher score indicating a higher degree of perceived burden. The alpha reliability of the scale for the total sample at Time 3 was .80.

Design

Repeated measures analyses of variance were used to compare outcomes for the longitudinal sample of 38 families in the program over time. Obtaining a comparison group of families on the waiting list over time is challenging due to the low response rate of these families and the periodic random selection of families from the waiting list for the program. Therefore, comparisons between families in the program and the waiting list were made at Time 3 only. Analyses of covariance (ANCOVA) were used to compare outcomes between groups while controlling for caregiver age, due to the significant difference between groups on this variable.

Results

Table 3 provides a summary of descriptive statistics of outcome measures across the three times for families in the program as well as outcome measures at Time 3 for the families on the waiting list. Repeated measures analyses of variance were used to compare outcomes over time for families in the program. There were significant differences between times for all outcomes: unmet needs, F(2,74) = 11.56, p < .01; service satisfaction, F(2,72) = 28.30, p < .01; community participation, F(2,70) = 8.60, p < .01; and caregiving burden, F(2,72) = 4.71, p < .05. Tests of simple effects (repeated measures t tests with a Bonferroni adjustment) indicated that from Time 1 to Time 2: unmet needs decreased, t(1,37) = 3.54, p < .01; service satisfaction increased, t(1,36) =−6.65, p < .01; and community participation increased, t(1,36) =−3.21, p < .01. Similarly, from Time 1 to Time 3: unmet needs decreased, t(1,37) = 4.02, p < .01; service satisfaction increased, t(1,36) =−5.40, p < .01; and community participation increased, t(1,36) =−3.94, p < .01. There were no significant changes for any outcomes from Time 2 to Time 3. There were no significant changes in caregiver burden from Time 1 to Time 2; however, caregiver burden decreased from Time 1 to Time 3, t(1,37) = 2.89, p < .01.

Table 3

Comparison of Outcomes Across Time and by Group at Time 3

Comparison of Outcomes Across Time and by Group at Time 3
Comparison of Outcomes Across Time and by Group at Time 3

Analyses of covariance were used to compare outcomes between families in the program and families on the waiting list at Time 3 while controlling for caregiver age. Families in the program had significantly fewer unmet needs, F(1,82) = 10.35, p < .01, and were significantly more satisfied with services, F(1, 81) = 20.12, p < .01. There were no significant differences between groups on community participation or caregiver burden.

Table 4 provides a summary of unmet needs for individual services at Times 1 and 3 for families in the program as well as at Time 3 for families on the waiting list. We used McNemar tests to compare unmet needs for individual services across time for families in the program. Unmet service needs significantly decreased over time for five services: occupational therapy, social/recreational activities, educational/vocational training, assistance obtaining benefits, and assistance obtaining vocational services. Chi square tests were used to compare unmet needs between families in the program and families on the waiting list at Time 3. Compared with families on the waiting list, families in the program had fewer unmet needs on 15 of the 28 services considered.

Table 4

Comparison of Service Use an Unmet Needs Across Time and With Comparison Group (in %)

Comparison of Service Use an Unmet Needs Across Time and With Comparison Group (in %)
Comparison of Service Use an Unmet Needs Across Time and With Comparison Group (in %)

Discussion

In the current study we have built on previous research by studying long-term outcomes of consumer direction within a family perspective. Consistent with previous research on service outcomes, families in the Illinois Home Based Support Services Program experienced decreased unmet needs for services and increased satisfaction with services (Beatty et al., 1998; Benjamin & Matthias, 2001; Benjamin et al., 2000; Benjamin et al., 1999; Carlson et al., 2005; Doty, Kasper, & Litvak, 1996; Foster et al., 2003; Heller et al., 1999). Although these benefits were experienced over a nearly a decade (1991–2000), families experienced an initial benefit that was sustained over time.

We were not able to compare families in the program with families on the waiting list over time. Families are randomly selected from the waiting list for the program as money is allocated to the program. In addition, the response rate for families on the waiting lists has been consistently lower than that of families in the program. These factors made it difficult to obtain a consistent control group of families on the waiting list over time. Instead, families in the program and families on the waiting list were compared at Time 3 only. Consistent with previous research at Time 2 (Heller et al., 1999), families in the program had significantly fewer unmet needs and higher service satisfaction than did families on the waiting list. The program seemed to decrease unmet needs the greatest for the following: social/recreational services, educational/vocational training and assistance obtaining these services, dental care, and advocacy, which was likely related to not receiving desired services.

There was an initial increase in community participation for individuals with developmental disabilities in the program that was sustained over time. However, unlike previous findings at Time 2 (Heller et al., 1999), there were no significant differences between the community participation of individuals in the program and individuals on the waiting list. This decade during which this study was conducted (1991–2000) was a time of significant shifts in attitudes, legislation, and community-based supports for individuals with disabilities. The 1990 Americans With Disabilities Act and the 1999 Olmstead decision are watershed events encapsulating the study period. Although far below the national average, fiscal support for community-based supports did rise within Illinois (Braddock et al., 2005). This may have contributed to the lack of difference between groups.

Similarly, caregiver burden decreased for families in the program over the 9-year study period. However, there were no significant differences on caregiver burden between families in the program and families on the waiting list at Time 3, which is consistent with previous research at Time 2 (Heller et al., 1999), suggesting that there may be confounding factors regarding attrition and the longitudinal sample. Another possibility is that caregiving burden may have decreased across time for these caregivers regardless of participation in the program. There are two opposing theories concerning the psychological well-being of family caregivers across the life cycle (Heller, 1998). The “wear and tear” hypothesis predicts that over time the stresses will deplete caregivers' resources (Johnson & Catalano, 1983). The “adaptational” hypothesis predicts that caregiving becomes less stressful over time. There is some support for both hypotheses (Heller, 1998). Furthermore, some evidence exists that well-being does not follow a linear relationship with age. Comparing five age phases, Heller, Rowitz, and Farber (1992) found that perceived burden was lowest for caregivers of the youngest (children under 6) and oldest categories (relatives 30 years and older). Comparing five age phases for a large sample of families from the Netherlands, Haveman, van Berkum, Reijnders, and Heller (1997) found burden to be relatively consistent across stages, but highest in early adulthood (relatives ages 20 to 29 years), perhaps representing the transition from school to adult services.

Although no differences on caregiver burden were found between families in the program and families on the waiting list in previous research at Time 2 (Heller et al., 1999) and at Time 3 in the current study, other research has supported significant impacts on family caregivers using other measures. Compared with families on the waiting list for the Home Based Support Services Program, Caldwell (2006) found that caregivers in the program reported fewer out-of-pocket disability expenses, greater access to healthcare, engagement in more social activities, greater leisure satisfaction, and better mental health for lower income caregivers. In addition, Heller et al. (1999) found that caregivers in the program reported greater caregiver self-efficacy, and Caldwell and Heller (2003) reported that increased control of respite services through the program was associated with increased employment of mothers. These findings on benefits for family caregivers are consistent with those reported in the Cash and Counseling demonstrations, particularly for the Florida site, which included children and adults with developmental disabilities (Foster et al., 2005a, 2005b, 2005c). More research is needed to better understand outcomes of consumer-directed supports on family caregivers, particularly concerning the influence of family caregivers receiving payment. During this study period, regulations within the Home Based Support Services Program discouraged primary family caregivers from receiving payment. Since then, the program has been converted to Medicaid and changes made that permit primarily family caregivers to be paid (Caldwell, 2006), which appears to influence the strength of certain outcomes (Foster et al., 2005a, 2005b, 2005c).

Study Limitations

The current study has many limitations. First, as previously discussed, the lack of a control group over time makes it difficult to draw clear conclusions about the impact of the program. Ideally, having a consistent, randomly selected control group over time would monitor for more threats to internal validity. Realistically, many families from the waiting list were selected for the program over the 9-year period. Instead, cross-sectional comparisons have been made at Time 2 (Heller et al., 1999) and at Time 3 in the current study. Second, caution should be given to attrition in the longitudinal sample when interpreting findings. Based on available demographic information, mothers and younger caregivers were more likely to respond. However, data available on the attrition group were limited, and there may have been other factors that biased the longitudinal group. Representative of national trends (Braddock, 1999; Braddock et al., 2005), the initial sample of families in the program contained many aging caregivers. It is likely that some of these caregivers passed away or became unable to provide care. As previously discussed, age and historical events may have influenced the longitudinal outcomes, particularly those concerning decreased caregiver burden and increased community participation of adults with disabilities. Due to differences in age between families in the program and families on the waiting list at Time 3, age was controlled when making cross-sectional comparisons. However, there may have been other unknown factors related to attrition that confounded comparisons between groups.

Third, related to attrition, consideration should be given to the small sample size of families. It is possible that findings and lack of significance of differences at Time 3 could be influenced by sample size and statistical power.

Finally, the generalizability of the current study is limited. Consumer-directed programs vary considerably from state to state and internationally. They differ in regards to focus, eligibility, amount of benefit or budget, and program regulations. Therefore, caution is necessary when generalizing findings, and more opportunities are needed for rigorous studies of different models.

Policy Implications

Consumer-directed supports embrace ideals of the independent living movement and rights of individuals with disabilities to control financial resources (DeJong et al., 1998). However, only approximately 11% of individuals with developmental disabilities in the United States receive out-of-home residential supports (Braddock et al., 2005). Because the vast majority of individuals with disabilities rely on informal supports, predominately provided by family (Doty, Stone, Jackson, & Drabek, 2001; Fujiura, 1998), consumer direction has also re-surfaced important needs of families with relatives who have disabilities. The current study adds to the growing body of literature supporting beneficial outcomes for both caregivers and individuals with disabilities. As consumer-directed supports continue to grow, there are several policy considerations for the future.

First, many complex factors have contributed to the lack of family support policy within the United States. Although consumer-directed supports are fulfilling important needs of families and caregivers, there are additional policy options to consider. The Developmental Disabilities Act and the National Family Caregiver Support Program under the Older Americans Act provide crucial funding streams for family support. Recent changes made during the reauthorization of the Older Americans Act should extend caregiver support to aging caregivers of adults with developmental disabilities. In addition to these sources of family support, many legislative proposals exist for childcare, respite, paid family leave from work, and tax credits for caregivers (Family Caregiver Alliance, 2006). Second, growth in consumer direction is being driven primarily through Medicaid. The majority of cash subsidy family support programs for individuals with developmental disabilities originated as state-funded programs, and there has been reluctance to convert to Medicaid (Rizzolo et al., 2006). The history of the Illinois Home Based Support Services Program is perhaps telling. In 2002, when the program was converted to utilize Medicaid Home and Community Based Services Waiver funding, much of the original flexibility was lost. The program also philosophically changed from a focus on the family as a whole towards a focus on the individual. This resulted in many caregivers becoming paid caregivers. Within the current structure of Medicaid, it may be difficult to support families and provide desired flexibility.

Finally, many policymakers have been drawn to consumer-directed supports for potential cost savings in light of aging populations, including aging caregivers of individuals with developmental disabilities (Braddock, 1999; Braddock et al., 2005) and increased demands for long-term services. Findings on cost savings from the Cash and Counseling demonstrations have been mixed; however, states were able to contain costs and there is some indication that participation reduced placements in nursing homes (Dale & Brown, 2005). Similarly, the Illinois Home Based Support Program has contributed to decreased placements in nursing homes and other institutions (Heller & Caldwell, 2005). The economic value of informal care is staggering. Some researchers have calculated these costs to be over $257 billion a year (Arno, 2002; Arno, Levine, & Memmott, 1999), which more than triples all long-term services provided through Medicaid. It is critical for consumer-directed supports to be placed within the larger picture of long-term supports. Budgets and amounts of financial resources provided through consumer-directed supports often are limited and capped. Furthermore, there is evidence that when government budgets are tight, these types of services may be most vulnerable to cuts (Rizzolo et al., 2006). Extensive waiting lists for residential services highlight the inadequate amount of resources in the current system (Prouty, Smith, & Lakin, 2005). Beyond the battle for control of financial resources and budgets, larger questions remain concerning public financial commitment to the needs and rights of individuals with disabilities and their families.

References

References
Agosta
,
J.
and
V.
Bradley
.
1985
.
Family care for persons with developmental disabilities: A growing commitment.
Cambridge, MA: Human Service Research Institute
.
Agosta
,
J.
and
K.
Melda
.
1995
.
Results of a national survey of family support programs.
Salem, OR: Human Service Research Institute
.
Arno
,
P.
2002
.
Well-being of caregivers: The economic issues of caregivers.
In T. McRae (Chair), New caregiver research. Symposium conducted at the annual meeting of the American Association of Geriatric Psychiatry, Orlando, Florida
.
Arno
,
P. S.
,
C.
Levine
, and
M. M.
Memmott
.
1999
.
The economic value of informal caregiving.
Health Affairs
18
:
182
188
.
Beatty
,
P. W.
,
G. W.
Richmond
,
S.
Tepper
, and
G.
DeJong
.
1998
.
Personal assistance for people with physical disabilities: Consumer-direction and satisfaction with services.
Archives of Physical Medicine and Rehabilitation
79
:
674
677
.
Benjamin
,
A. E.
,
T. M.
Franke
,
R. E.
Matthias
, and
E.
Park
.
1999
.
Consumer direction and in-home services: Recipient perspectives on family and non-family service provision.
Journal of Rehabilitation Administration
22
:
233
247
.
Benjamin
,
A. E.
and
R. E.
Matthias
.
2001
.
Age, consumer-direction, and outcomes of supportive services at home.
The Gerontologist
41
:
632
642
.
Benjamin
,
A. E.
,
R. E.
Matthias
, and
T. M.
Franke
.
2000
.
Comparing consumer-directed and agency models for providing supportive services at home.
Health Services Research
35
:
351
366
.
Braddock
,
D.
1999
.
Aging and developmental disabilities: Demographic and policy issues affecting American families.
Mental Retardation
37
:
155
161
.
Braddock
,
D.
,
R.
Hemp
,
M. C.
Rizzolo
,
D.
Coulter
,
L.
Haffer
, and
M.
Thompson
.
2005
.
The state of the states in developmental disabilities.
Boulder: University of Colorado, Coleman Institute for Cognitive Disabilities
.
Braddock
,
D.
and
S.
Parish
.
2001
.
An institutional history of disability.
In G. L. Albrecht, K. D. Seelman, & M. Bury (Eds.), Handbook of disability studies (pp. 11–68). Thousand Oaks, CA: Sage
.
Caldwell
,
J.
2006
.
Consumer-directed supports: Economic, health, and social outcomes for families.
Mental Retardation
44
:
405
417
.
Caldwell
,
J.
and
T.
Heller
.
2003
.
Management of respite and personal assistance services in a consumer-directed family support programme.
Journal of Intellectual Disability Research
47
:
352
366
.
Carlson
,
B. L.
,
S.
Dale
,
L.
Foster
,
R.
Brown
,
B.
Phillips
, and
J.
Schore
.
2005
.
Effect of consumer direction on adults' personal care and well-being in Arkansas, New Jersey and Florida.
Washington, DC: Office of Disability, Aging, and Long-Term Policy, Office of the Assistant Secretary for Planning and Evaluation, U.S. Department of Health and Human Services
.
Crowley
,
J. S.
2003
.
An overview of the Independence Plus initiative to promote consumer-direction of services in Medicaid.
Washington, DC: The Kaiser Commission on Medicaid and the Uninsured
.
Dale
,
S.
and
R.
Brown
.
2005
.
The effect of cash and counseling on Medicaid and Medicare costs: Findings for adults in three states.
Washington, DC: Office of Disability, Aging, and Long-Term Policy, Office of the Assistant Secretary for Planning and Evaluation, U.S. Department of Health and Human Services
.
Dale
,
S.
,
R.
Brown
,
B.
Phillips
, and
B
Carlson
.
2005
.
Experiences of workers hired under cash and counseling: Findings from Arkansas, Florida and New Jersey.
Washington, DC: Office of Disability, Aging, and Long–Term Policy, Office of the Assistant Secretary for Planning and Evaluation, U.S. Department of Health and Human Services
.
DeJong
,
G.
,
A. I.
Batavia
, and
L. B.
McKnew
.
1992
.
The independent living model of personal assistance in national long-term care policy.
Generations
16
:
89
95
.
Doty
,
P.
and
S.
Flanagan
.
2002
.
Highlights: Inventory of consumer-directed support programs.
Washington, DC: Office of Disability, Aging and Long-Term Care Policy, U.S. Department of Health and Human Services
.
Doty
,
P.
,
J.
Kasper
, and
S.
Litvak
.
1996
.
Consumer-directed models of personal care: Lessons from Medicaid.
Milbank Quarterly
74
:
377
409
.
Doty
,
P. J.
,
R. I.
Stone
,
M. E.
Jackson
, and
J. L.
Drabek
.
2001
.
Informal caregiving.
In C. J. Evashwick (Ed.), The continuum of long term care: An integrated systems approach (2nd ed., pp. 131–151). Albany, NY: Delmar Thomson Learning
.
Estabrook
,
A. H.
1928
.
The pauper idiot pension in Kentucky.
Journal of Psycho-Asthenics
33
:
59
61
.
Family Caregiver Alliance.
2006
.
Policy statement from Family Caregiver Alliance outlines national agenda for caregiver support. Caregiving Policy Digest, 6(11).
San Francisco: Author
.
Feinberg
,
L. F.
and
S. L.
Newman
.
2005
.
Consumer direction and family caregiving: Results from a national survey.
New Brunswick, NJ: National Center on Caregiving at Family Caregiver Alliance, Rutgers Center for State Health Policy
.
Ferguson
,
P.
2004
.
The legacy of the almshouse.
In S. Noll & J. W. Trent (Eds.), Mental retardation in America: A historical reader (pp. 40– 64). New York: New York University Press
.
Foster
,
L.
,
R.
Brown
,
B.
Phillips
, and
B. L.
Carlson
.
2005a
.
The effects of cash and counseling on the primary informal caregivers of children with developmental disabilities.
Washington, DC: Office of Disability, Aging, and Long-Term Policy, Office of the Assistant Secretary for Planning and Evaluation, U.S. Department of Health and Human Services
.
Foster
,
L.
,
R.
Brown
,
B.
Phillips
, and
B. L.
Carlson
.
2005b
.
How cash and counseling affects informal caregivers: Findings from Arkansas, Florida, and New Jersey.
Washington, DC: Office of Disability, Aging, and Long-Term Policy, Office of the Assistant Secretary for Planning and Evaluation, U.S. Department of Health and Human Services
.
Foster
,
L.
,
R.
Brown
,
B.
Phillips
, and
B. L.
Carlson
.
2005c
.
Easing the burden of caregiving: The impact of consumer direction on primary informal caregivers in Arkansas.
The Gerontologist
45
:
474
485
.
Foster
,
L.
,
R.
Brown
,
B.
Phillips
,
J.
Schore
, and
B. L.
Carlson
.
2003
.
Improving the quality of Medicaid personal assistance through consumer direction.
Health Affairs
22
:
162
175
.
Foster
,
L.
,
S.
Dale
,
R.
Brown
,
B.
Phillips
,
J.
Schore
, and
B. L.
Carlson
.
2004
.
Do consumer-directed Medicaid supportive services work for children with developmental disabilities?
Washington, DC: Office of Disability, Aging, and Long-Term Policy, Office of the Assistant Secretary for Planning and Evaluation, U.S. Department of Health and Human Services
.
Fujiura
,
G. T.
1998
.
Demography of family households.
American Journal on Mental Retardation
103
:
225
235
.
Haveman
,
M.
,
G.
van Berkum
,
R.
Reijnders
, and
T.
Heller
.
1997
.
Differences in service needs, time demands, and caregiving burden among parents of persons with mental retardation across the life cycle.
Family Relations
46
:
417
425
.
Heller
,
T.
1998
.
Aging with intellectual disabilities and later-life family caregiving.
In B. A. Edelstein (Ed.), Comprehensive clinical psychology Volume 7: Clinical geropsychology (pp. 327– 347). Oxford, UK: Pergamon/Elsevier
.
Heller
,
T.
and
J.
Caldwell
.
2005
.
Impact of a consumer-directed family support program on reduced out-of-home institutional placement.
Journal of Policy and Practice in Intellectual Disabilities
2
:
63
65
.
Heller
,
T.
and
A.
Factor
.
1991
.
Permanency planning for adults with mental retardation living with family caregivers.
American Journal on Mental Retardation
96
:
163
176
.
Heller
,
T.
and
A.
Factor
.
1993
.
Aging family caregivers: Support resources and changes in burden and placement desire.
American Journal on Mental Retardation
98
:
417
426
.
Heller
,
T.
,
R.
Markwardt
,
L.
Rowitz
, and
B.
Farber
.
1994
.
Adaptation of Hispanic families to a member with mental retardation.
American Journal on Mental Retardation
99
:
289
300
.
Heller
,
T.
,
A. B.
Miller
, and
K.
Hsieh
.
1999
.
Impact of a consumer-directed family support program on adults with disabilities.
Family Relations
48
:
419
427
.
Heller
,
T.
,
L.
Rowitz
, and
B.
Farber
.
1992
.
The domestic cycle of families of persons with mental retardation.
Chicago: University Affiliated Program in Developmental Disabilities and School of Public Health, University of Illinois at Chicago
.
Herman
,
S. E.
1991
.
Use and impact of a cash subsidy program.
Mental Retardation
29
:
253
258
.
Herman
,
S. E.
1994
.
Cash subsidy program: Family satisfaction and need.
Mental Retardation
32
:
416
421
.
Johnson
,
C.
and
D.
Catalano
.
1983
.
A longitudinal study of family supports to impaired elderly.
The Gerontologist
23
:
612
618
.
Mahoney
,
K. J.
,
S. M.
Desmond
,
L.
Simon-Rusinowitz
,
D. M.
Loughlin
, and
M. R.
Squillace
.
2002
.
Consumer-preferences for a cash option versus traditional services: Telephone survey results from New Jersey elders and adults.
Journal of Disability Policy Studies
13
:
74
86
.
Meyers
,
J. C.
and
M. O.
Marcenko
.
1989
.
Impact of a cash subsidy program for families of children with severe developmental disabilities.
Mental Retardation
27
:
383
387
.
National Council on Disability.
2004
.
Consumer-directed health care: How well does it work?
Washington, DC: National Council on Disability
.
Powers
,
L. E.
,
J.
Sowers
, and
G. H. S.
Singer
.
2006
.
A cross-disability analysis of person-directed, long-term services.
Journal of Disability Policy Studies
17
:
66
76
.
Prouty
,
R.
,
G.
Smith
, and
K. C.
Lakin
.
2005
.
Residential services for persons with developmental disabilities: Status and trends through 2004.
Minneapolis: University of Minnesota, Research and Training Center on Community Living/Institute on Community Integration
.
Rizzolo
,
M.
,
R.
Hemp
, and
D.
Braddock
.
(2006
.
February). Family support services in the United States. Minneapolis: University of Minnesota, Research and Training Center on Community Living.
Policy Research Brief
17
/
1
:
1
11
.
Simon-Rusinowitz
,
L.
,
K.
Mahoney
,
A.
Desmond
,
D.
Shoop
,
M.
Squillace
, and
R.
Fay
.
1997
.
Determining consumer preferences for a cash option: Arkansas survey results.
Health Care Financing Review
19
:
73
96
.
Simon-Rusinowitz
,
L.
,
K. J.
Mahoney
,
D. M.
Loughlin
, and
M. D.
Sadler
.
2005
.
Paying family caregivers: An effective option in the Arkansas cash and counseling demonstration and evaluation.
In R. K. Caputo (Ed.), Challenges of aging on U.S. families: Policy and practice implications (pp. 83–105). Binghamton, NY: Haworth Press
.
Simon-Rusinowitz
,
L.
,
K. J.
Mahoney
,
D. M.
Shoop
,
S. M.
Desmond
,
M. R.
Squillace
, and
J. A.
Sowers
.
2001
.
Consumer and surrogate preferences for a cash option versus traditional services: Florida adults with developmental disabilities.
Mental Retardation
39
:
87
103
.
Tritz
,
K.
2005
.
Long-term care: Consumer-directed services under Medicaid.
Washington, DC: Congressional Research Service
.
Wolfensberger
,
W.
1975
.
The origin and nature of our institutional models.
Syracuse, NY: Human Policy Press
.
Zimmerman
,
S. L.
1984
.
The mental retardation family subsidy program: Its effect on families with a mentally handicapped child.
Family Relations
33
:
105
118
.

Support for this research was provided through the Rehabilitation Research and Training Center on Aging With Developmental Disabilities, National Institute on Disability and Rehabilitation Research (Grant H133B031134), and the Administration on Developmental Disabilities (Grant 040C400216).

Author notes

Authors:

Joe Caldwell, PhD (jcaldw3@uic.edu), Visiting Senior Research Specialist, Rehabilitation Research and Training Center on Aging With Developmental Disabilities, and Policy Analyst, Association of University Centers on Disabilities. Tamar Heller, PhD, Department Head and Director, Rehabilitation Research and Training Center on Aging With Developmental Disabilities, Department of Disability and Human Development, University of Illinois at Chicago, 1640 W. Roosevelt Rd., Chicago, IL 60608