Medicaid Support Waiver for individuals with developmental disabilities living at home with family
The Illinois Home Based Support Services Program is a family support program that provides individuals with disabilities and their families with an individualized budget to purchase services and supports based on their needs. The program originated in the 1990s as a state-only funded demonstration project. At that time the program focused exclusively on supporting adults with severe disabilities living in the family home, with the goals of strengthening informal, unpaid supports and preventing undesirable out-of-home placements.
In 2002, the program was converted into a Medicaid 1915(c) Home and Community-Based Services waiver program. This resulted in some changes to the program, most notably more restrictions on how funding could be used by families (Caldwell, 2006). Eligibility for the program was also broadened to individuals with developmental disabilities regardless of severity or living situation. However, the majority of individuals served by the program live at home with family.
Adults in the program receive a budget of approximately two time SSI. Service facilitators, employed by the state, assist families with developing service plans and coordinate payments for approved services by the state. Frequently purchased services include: respite, personal assistance services, home modifications, assistive technology, employment services, social/recreational services, therapies and transportation. The program allows flexibility in hiring individuals to provide services; in more than half of families a family member is receiving payment.
Individuals with I/DD
Implemented statewide through a Medicaid 1915(c) HCBS waiver
Provide services that allow individuals to remain in their own home or live in a community setting
Evidence of Outcomes
Extensive evaluations and research on the program have been conducted since its inception. The original program selected families randomly through a “lottery,” which presented a rare opportunity to study the impact of this program with an experimental design using a randomized control group.
Research has demonstrated that program decreased unmet needs for services and out-of-pocket family expenses. Impacts on family caregivers included: fewer out‐of‐pocket disability expenses, better access to health care, greater social and leisure opportunities, greater employment and better mental health of lower income caregivers (Heller et al., 1999; Caldwell & Heller, 2003; Caldwell, 2006). Individuals with I/DD experienced greater community participation and employment outcomes (Heller at al., 1999). Longitudinal research over nearly a decade indicated that the impacts were sustained. Moreover, the program significantly reduced out-of-home residential placements, particularly in institutional settings (Caldwell & Heller, 2007; Heller & Caldwell, 2005).
Heller, T., Miller, A. B. and Hsieh, K. (1999). Impact of a consumer‐directed family support program on adults with disabilities. Family Relations, 48, 419–427.
Caldwell, J. and Heller, T. (2003). Management of respite and personal assistance services in a consumer‐directed family support programme. Journal of Intellectual Disability Research, 47(4/5), 352–366.
Caldwell, J. & Heller, T. (2007). Longitudinal outcomes of a consumer-directed program supporting adults with developmental disabilities and their families. Intellectual and Developmental Disabilities, 45, 161-173.
Caldwell, J. (2006). Consumer‐directed supports: economic, health, and social outcomes for families. Mental Retardation, 44(6), 405–417.
Caldwell, J. (2007). Experiences of families with relatives with intellectual and developmental disabilities in a consumer-directed support program. Disability & Society, 22, 549-562.
Heller, T. and Caldwell, J. (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(1), 63–65.