ABSTRACT
This study investigated families' experience of choice within a participant-directed Medicaid waiver program for young children with autism. Fourteen parents or grandparents participated in in-depth interviews about their experience of choosing personnel, directing in-home services, and managing the $25,000 annual allocation. Key findings included families' preference to hire providers with whom they have a prior relationship, parent empowerment and differences of opinion about parents as teachers. Professionals implementing participant directed service models could benefit from understanding the strong value parents' placed on the personalities and interpersonal skills of providers. Parents' descriptions of directing rather than merely accepting autism services revealed increased confidence in their ability to choose and manage the multiple components of their children's HCBS autism waiver program.
Subject(s)
Autistic Disorder/economics , Choice Behavior , Medicaid , Perception , Attitude , Child , Female , Humans , Male , Parents , United StatesABSTRACT
A group of "informal" caregivers, local people to whom residents turn for information and advice, was identified in the east Harlem community and enlisted in a two-month study. Results suggest that formal human services agencies and their intended clientele would benefit by increased efforts on the part of these institutions to locate and work with community caregivers.
