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).
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).
- 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.
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
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.
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).