“In the Driver’s Seat”: Parent Perceptions of Choice in a Participant-Directed Medicaid Waiver Program for Young Children with Autism

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.

Perspectives of self-direction: a systematic review of key areas contributing to service users’ engagement and choice-making in self-directed disability services and supports

“…, Mitchell , Timberlake et al . ); one included the perspectives of a combination of family members or caregivers and service providers (Dew et al . ); and two articles explored the perspectives of service users who had support from parents or guardians when necessary (Mitchell , Lombe et al .…”

“…Six of the eleven research articles (Mitchell ,b,c, ,b, Timberlake et al . ) focused specifically on self‐directed policy for young people with disability. The three review articles aimed to synthesise research from the perspectives of programme administrators and service users, and placed findings within the context of government and service delivery policy in the United Kingdom (Harkes et al .…”

“…, Junne & Huber , Kendall & Cameron , Timberlake et al . ) where participants might be exposed to risks (Junne & Huber ). Budgeting in self‐directed environments has been characterised as pressure‐filled due to the intensive, time‐consuming work required.…”

“…For example, Timberlake et al . () explored the perspectives of the families of adults with intellectual and developmental disabilities participating in a home‐based support services programme. Service users engaging with the programme were able to hire and provide funding to personal support workers of their choice.…”

Introduction to the special issue: Family Support of Persons with Disabilities Across the Life Course

“…Throughout the life course, Medicaid influences family caregiving experiences through its role as the primary funding stream for LTSS. In childhood, parents of children with disabilities may act as coordinators of services and evaluators of quality, as one study of parents of children with autism spectrum disorder found (Timberlake, Leutz, Warfield, & Chiri, 2014). In adulthood, Medicaid offers an opportunity for greater autonomy and self-direction, for all program recipients, including people with mental illness, people with IDDs, and older adults, populations previously thought unable or uninterested in decision making (San Antonio et al, 2010;Shen et al, 2008).…”