The 130th Annual Meeting of APHA

Abstract #49009

Joe Caldwell, MS and Tamar Heller, PhD. RRTC on Aging with Developmental Disabilities, Department of Disability and Human Development, University of Illinois at Chicago, 1640 West Roosevelt Road, Chicago, IL 60608, 312-996-7988, jcaldw3@uic.edu

The study explores the management of respite and personal assistance services by families with relatives with developmental disabilities. It focuses on control of families in recruiting, hiring and firing, training, scheduling, directing, and negotiating wages of staff they hire to provide services. Families participating in a model consumer-directed family support program, the Illinois Home Based Support Services Program, and families on the waiting list for this program were surveyed. Results indicate that more control by families in the management of their respite/personal assistance services is associated with increased satisfaction with services and benefits for both individuals with developmental disabilities and caregivers. More control is related to more community involvement of individuals with developmental disabilities; more control is related to mothers being able to be employed more hours per week. When families are given control in managing their respite/personal assistance, they tend to hire individuals to provide service whom they previously knew –friends, neighbors, and to a great extent, other family members. Outcomes of families hiring other relatives were explored; hiring of other relatives to provide services is associated with increased community involvement of individuals with developmental disabilities. Policy implications are discussed for the existing Illinois program and for other states as they gradually increase funding for family support and move towards consumer-directed services.

Learning Objectives: At the conclusion of this session, participants will

• Recognize some positive outcomes of consumer-directed supports;
• Apply a model consumer-directed family support program to the developmental of other programs;
• Advocate for systems change through policies allowing people with disabilities and families to direct their own services.

Keywords: Consumer Direction, Long-Term Care

Presenting author's disclosure statement:
I do not have any significant financial interest/arrangement or affiliation with any organization/institution whose products or services are being discussed in this session.