Journal of Autism and Developmental Disorders

, Volume 44, Issue 4, pp 903–914 | Cite as

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

  • Maria T. Timberlake
  • Walter N. Leutz
  • Marji Erickson Warfield
  • Giuseppina Chiri
Original Paper


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.


Participant direction Choice Medicaid home and community-based services Autism waiver 



Preparation of this manuscript was supported with a grant from the Maternal and Child Health Bureau, HRSA, grant number R40MC15598.

Conflict of interest

The authors declare that they have no conflict of interest.


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Copyright information

© Springer Science+Business Media New York 2013

Authors and Affiliations

  • Maria T. Timberlake
    • 1
    • 3
    • 4
  • Walter N. Leutz
    • 2
  • Marji Erickson Warfield
    • 1
  • Giuseppina Chiri
    • 1
  1. 1.Starr Center for Intellectual and Developmental Disabilities, Heller School for Social Policy and ManagementBrandeis UniversityWalthamUSA
  2. 2.Schneider Institute for Health Policy, Heller School for Social Policy and ManagementBrandeis UniversityWalthamUSA
  3. 3.Foundations and Social Advocacy DepartmentState University of New York, College at CortlandCortlandUSA
  4. 4.c/o Marji Erickson Warfield, Heller School for Social Policy and ManagementBrandeis UniversityWalthamUSA

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