Evaluation of a Model Consumer - Directed Program: Illinois

Over 75% of individuals with developmental disabilities live at home. One third of the family caregivers are over the age of 60 years. Yet, funding for family support accounts for less than 4% of funding nationally within the developmental disabilities
service system. Over the last decade states have made committed efforts to support individuals living at home with families. One example of such an effort is the Illinois Home Based Support Services Program (HBSSP) which is a model consumer- directed program for adults with developmental disabilities and their families. The program is considered consumer-directed because it provides families with an individualized budget of approximately $1,500 per month to design and direct supports. There are currently 19 similar consumer-directed programs within the United States. However, unlike Illinois, many of these programs focus only on children.
The Rehabilitation Research and Training Center on Aging with Developmental Disabilities has conducted research on the Illinois HBSSP since it was developed in 1990. The research sought to answer three questions: 1) What services are families
using? 2) What benefits do the families receive? and, 3) What is the impact on outof home placements?

Most Used Services
The most frequently purchased services include:
Respite Recreational activities
Transportation Therapies
Vocational training Home modifications
Benefits to Participants
Families participating in the program found the following benefits:
Fewer unmet service needs
More satisfaction with services
Increased confidence in their ability to provide care
Increased employment of mothers
Greater community involvement for persons with DD
Increased employment and higher wages for persons with DD
Decreased family desire for out-of-home placement

Impact on Out-of-Home Placement
The study compared the placements of 301 individuals in the HBSSP with 835 individuals on the waiting list between 1995 and 2003. The program resulted in a significant reduction in out-of-home placement for HBSSP participants. In 1995 all individuals with developmental disabilities were living at home. In 2003 only 70% of the individuals on the waiting list were
still living at home versus 81% of the individuals in the HBSSP.
Enrollment in the HBSSP resulted in a significant reduction in institutional and nursing facility placements. Sixteen percent of
the individuals on the waiting list were placed into institutions versus 10% of the individuals in the HBSSP.

For more information:
Caldwell, J., & Heller, T. (2003). Management of respite and personal assistance services in a consumerdirected
family support programme. Journal of Intellectual Disability Research, 47(4/5), 352-366.
Heller, T., Miller, A.B., & Hsieh, K. (1999). Impact of a consumer-directed family support program on
adults with developmental disabilities and their family caregivers. Family Relations, 48, 405-410.

Tamar Heller, Ph.D. and Joe Caldwell, M.S.
Rehabilitation Research and Training Center on Aging with Developmental Disabilities
Department of Disability & Human Development
College of Applied Health Sciences
University of Illinois at Chicago
(312) 413-1860 or toll free (800) 996-8845
Website: www.uic.edu/orgs/rrtcamr
Funding was provided through the Administration on Developmental Disabilities (Grant #040C400216) and the Rehabilitation
Research and Training Center on Aging with Developmental Disabilities, National Institute on Disability and
Rehabilitation Research (Grant # H133B031134). Views expressed are those of the authors.
We would like to thank Connie Sims and Pamela Baker from the Illinois Department of Human Services, Division on
Developmental Disabilities and Charlotte Cronin from the Family Support Network for their collaboration.