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Rehabilitation & Research Training Center on
Aging with Developmental Disabilities

Project Progress Summary

R8Outcomes of consumer-Directed Family Support

Principal Investigator: Alan Factor, PhD
Co-Principal Investigator(s): Joe Caldwell, MS & Tamar Heller, PhD


The following sections need to be filled in and submitted to RRTCADD.

    1. IRB Status
    2. Assessment Tools
    3. Recruitment Status
    4. Data Collection Status
    5. Project Modifications
    6. Results

    1. Publications
    2. Presentations
    3. Trainings
    4. Technical Assistance
    5. Grants Funded
    6. Recognition and Service

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Review of Literature
Hypotheses/Research Questions
Sample Population and Methodology
Data Collection and Measures
Data Analysis
Anticipated Findings and their Implications for Future Research
Research Activities
Scholarly Activities


Review of Literature

While over 60% of individuals with DD live with families (Fujiura, 1998), funding allocated for family support accounts for less than 4% of funding within the I/DD service system (Parish, Pomeranz-Essley & Braddock, 2003). Over the last decade, states have significantly increased their fiscal efforts to support individuals and families. As states consider strengthening family support policies, it is important for research to explore outcomes of different models of service provision.

One model gaining attention is consumer-directed family support. Within this model individuals and families receive cash subsidies to design and direct their supports. Broad demand exists for consumer-directed services across disability and age groups (Benjamin & Matthias, 2001; Mahoney, et al, 2002; Simon-Rusinowitz, et al., 2001; Tilly, Weiner & Cueller, 2000). Initiatives such as the Robert Wood Johnson Cash and Counseling Projects, New Freedom Initiative Systems Change Grants, and the recent CMS Independence Plus Waiver Templates are providing states with more options to implement consumer-directed programs.

Relatively few empirical studies have evaluated outcomes of consumer-directed services. Some studies have compared consumer-directed with agency-directed services. Reported outcomes include: fewer hospitalizations, higher preventative healthcare utilization, better perception of health, lower unmet service needs, greater productivity and employment, and increased feelings of control over life (Adams & Beatty, 1998; Foster, et al., 2003; Prince, Manley & Whiteneck, 1995).

Currently, 19 states offer cash subsidy support to families with relatives with I/DD (Parish, et al.,, 2003). The few studies of these programs have reported such benefits as: less caregiver stress, including financial stress, enhanced life satisfaction and satisfaction with services, and increased perceived ability to provide care within the family home (Herman, 1991; 1994; Myers & Marcenko, 1989; Zimmerman, 1984). The only studies to evaluate outcomes of consumer-directed family support targeting adults, rather than children, with I/DD have been those conducted on the Illinois Home Based Support Services Program (HBSSP) (Caldwell & Heller, 2003; Heller et al., 1999). These studies found that participants had fewer unmet needs and used more services; caregivers were more satisfied with services, experienced greater self-efficacy, and less likely to desire out-of-home placement.; and individuals with I/DD experienced increased community integration and monthly wages. More consumer control of respite/personal assistance services was associated with increased service satisfaction, community integration of individuals with I/DD, and employment of mothers (Caldwell & Heller, 2003). Hiring other family members to provide services was also associated with increased community integration.

While previous studies have reported less desire for out-of-home placement, no studies have investigated how consumer-directed programs affect actual placements over time. Furthermore, there are no longitudinal studies on long-term impacts of programs. Also, there are many additional outcomes that have yet to be explored: choice-making of individuals with I/DD; social/leisure activities of caregivers; and family out-of-pocket costs. Health status and health care utilization of family caregivers may also be related outcomes. There is evidence of rationing of healthcare within families with relatives with disabilities (Altman, Cooper & Cunningham, 1999); this may be indirectly reduced through increased family resources and increased maternal employment resulting from program participation. Finally, how programs impact different types of families has yet to be explored. Over 25% of family caregivers of individuals with I/DD are over the age of 60 (Braddock, 1999). Caregiver age differences have not been explored. Single parents may also use or benefit from consumer-directed programs differently. Nearly half of all families with relatives with DD are single-parent families; of which most are at or near the poverty level (Fujiura, 1998).


Hypotheses/Research Questions

  1. The present proposal builds on 10 years of longitudinal data maintained by the RRTC to explore the following sets of questions: How does participation in a consumer-directed family support program affect actual out-of-home placement?
  2. What are longitudinal impacts, over a 10-year period, of a consumer-directed family support program on the following outcomes: unmet needs and service use, caregiving time demands, caregiving appraisals (burden, satisfaction, self-efficacy), service satisfaction, employment, and community integration of individuals with disabilities?
  3. What is the impact of a consumer-directed family support program on the following outcomes: choice making of individuals with disabilities; health status and healthcare utilization of caregivers; social/leisure activities of caregivers; family out-of-pocket expenses? Furthermore, does the program impact families with aging caregivers or single-parent caregivers differently on these outcomes?


Sample Population and Methodology

To address the first two questions, we will conduct secondary analyses of two databases;the Illinois Department of Human Services (DHS) database on families who applied or received HBSSP services and the RRTC's 10-year longitudinal HBSSP database. The sample for the first question will consist of 1,519 families who were in the HBSSP (322) or on the waiting list (1,197) in 1995. The samples for the second question will consist of 41 families participating in the HBSSP over a 10-year period and arandomly selected control group of 82 families surveyed in 2000. Data on HBSSP participants was collected at three points: time 1 (1990); time 2 (1995); time 3 (2000).

The sample for the third set of questions will consist of about 100 randomly selected families in the HBSSP at least 3 years and a randomly selected control group of about100 families from the waiting list. There are currently 1,469 families in the HBSSP and 1,501 on the waiting list. DHS randomly selects HBSSP participants from the waiting list as money is allocated to the program. Based on the previous HBSSP studies' response rates of 25-30%,, 400 HBSSP participants and 500 families on the waiting list will be mailed surveys to achieve desired sample size.


Data Collection and Measures

Measures for research question #1 include demographics such as age, race, gender, and region of the state. Types of residential placements include supported living, group homes, ICFs/MR, state-operated developmental centers, and nursing homes.

Measures for research question #2 include those reported in previous studies on the HBSSP (Heller, et al,1999; Caldwell & Heller, 2003): service use and unmet needs - consisting of 28 common services; caregiving burden (Heller, Markwardt, Rowitz & Farber, 1994) (alpha =.85); caregiving satisfaction (alpha=.90); caregiving self-efficacy (alpha=.77); service satisfaction (alpha =.93); community integration (Heller & Factor, 1993) (alpha =.85). Caregiving time commitment and hours of employment of caregivers were also measured as single-items.

Data for research question #3 will be collected through surveys mailed to families. The Daily Choice Inventory (Heller, Miller, Hsieh & Sterns, 2000) (alpha =.85) will measure choice making of individuals with I/DD. Health status of caregivers will be measured using the SF-36(alpha exceeds .80) (McDowell & Newell, 1996). Healthcare utilization will be measured using items from the Behavioral Risk Factors Surveillance System (CDC, 2002a; 2002b) and include healthcare access and preventative care. Social/leisure activities of caregivers will include items on social activities outside home, vacations, and group/organization activity (Heller, Rowitz & Farber, 1992). A measure of out-of-pocket expenditures will be modeled on Fujiura et al.(1994).


Data Analysis

For research question #1, groups (HBSSP participants and families on the waiting list in 1995) will be compared on current placement and different types of placement using chi-square analyses. For research question #2, outcomes for HBSSP participants will be compared longitudinally using repeated measures ANOVA and tests of simple effects. Independent-sample t-tests will compare outcomes of HBSSP participants with a control group of families on the waiting list at time 3. For research question #3, groups (HBSSP participants and families on the waiting list) will be compared on outcomes using independent-sample t-tests. Outcomes for different family types (aging caregivers and single-parent caregivers) and interactions between groups and family types will be analyzed using two-way factorial ANOVA.


Anticipated Findings and their Implications for Future Research

The National Goals, Current Knowledge, and Future Research Agenda for Persons with I/DD highlighted consumer-directed family support as a goal area for future research. Exploring actual placement, longitudinal impacts, and additional outcome measures will add to the existing knowledge of outcomes associated with consumer-directed services. Furthermore, the study will provide advocates and policymakers with information to strengthen or guide new policies and catalyze additional research on other existing state programs as well as comparisons of program across states.


Research Activities

IRB Status
Active Protocol # 2004-0496

Tools Being Developed
Not applicable.

Tools Being Adapted
A family support caregiver survey was developed. It consists of social, economic, and health outcome measures for caregivers and self-determination outcome measures for individuals with developmental disabilities.

Recruitment Status
Recruitment on-schedule. In the process of mailing surveys out to families in the consumer-directed family support program and families on the waiting list.

Data Collection Status
Not applicable.

Project Modifications
No project modifications.

Project Progress to Date
Analyses have been done for the first two research questions. These analyses used previously collected data to explore: 1)the impact of consumer-directed family support on out-of-home placement of individuals with developmental disabilities; and 2) longitudinal impacts of consumer-directed family support on unmet service needs, service satisfaction, caregiving appraisals (burden, satisfaction, and self-efficacy), and community integration of individuals with developmental disabilities. Enrollment in a consumer-directed family support program resulted in a significantly reduction in out-of-home placement, particularly in institutional and nursing home placements. Over a 10-year period, there were initial benefits of decreased unmet service needs and increased service satisfaction for families in the consumer-directed family support program. These benefits were sustained over time. Community integration of individuals with developmental disabilities in the consumer-directed family support program also significantly increased over the 10-year period.


Scholarly Activities

  • Heller, T. & Caldwell, J. (2004). Evaluation of a model consumer-directed program: Illinois. Institute on Disability and Human Development and the Rehabilitation Research and Training Center on Aging with Devlopmental Disabilities, University of Illinois at Chicago.
Not applicable.

Promoting Choices and Options for Future Planning (Rockford, IL) Alan Factor
Promoting Choices and Options for Future Planning (Collinsville, IL) Alan Factor
Promoting Choices and Options for Future Planning (Springfield, IL) Alan Factor
Promoting Choices and Options for Future Planning (Rockford, IL) Elizabeth DeBrine, Joe Caldwell, and Tia Nelis
Train-the-Trainer RRTC Family Future Planning Curriculum (Fairview Heights, IL) Alan Factor, Joe Caldwell, and Tia Nelis
Train-the-Trainer RRTC Family Future Planning Curriculum (Springfield, IL) Alan Factor

Technical Assistance
Information to advocates and policymakers on consumer-directed family support. Information to researchers on measures and survey instruments used to assess impacts of family support and future planning on families. Information to service provides concerning curriculum to support families and individuals with disabilities in future planning.
Information is being used by advocates to attempt to influence policy. Other researchers have used measures on caregiving appraisals in research and student dissertations. Through train-the-trainer workshops and TA concerning RRTC curriculum on future planning, aging and developmental disabilities organizations have conducted future planning workshops with families and individuals with developmental disabilities.

Grants Funded
Family Support 360 Grant, October 2004 to October 2005, Administration on Developmental Disabilities, $100,000.

Recognition and Service
Joe Caldwell and Tia Nelis - Represent the Department of Disability & Human Development and the RRTC on Aging with Developmental Disabilities on the statewide coalition of Illinois disability advocacy organizations.
Joe Caldwell -University Fellowship (competitive merit award which provides a stipend and tuition).