Infrastructure of Participant Direction for Medicaid‐Funded In‐Home Autism Services for Children in Massachusetts

Abstract

Although the prevalence of autism spectrum disorders (ASDs) among young children has grown, it has been noted that affected low-income children and children from ethnic and racial minority families are less likely to be diagnosed with ASD and to receive services. To help address such disparities, the Autism Division of the Massachusetts Department of Developmental Services instituted an Autism Waiver Program funded jointly by the Commonwealth of Massachusetts and the U.S. federal government. The program was designed to help low-income children with autism under age nine from diverse cultural backgrounds gain access to therapeutic supports. The program used a participant (parent)-directed model to help families to choose and manage services, staff, and their own budget. The authors detail a study that was designed to evaluate the costs and factors contributing to "successful operations." The authors gathered data from a focus group, reviewed cost data, and conducted individual qualitative interviews with staff involved in the coordination, delivery, and reimbursement of the program's services. They found that factors that contributed to successful operations included educated/trained families, skilled in-home therapists, clear communication with families and among staff, good information systems, and participation of families in "carryover" of interventions. Families varied in their capacities and time to choose and manage services, but staff adjusted their levels of assistance to compensate. Of the total program budget, individual budgets comprised 82% and administrative costs comprised 18% of the expenses. Program staff were generally satisfied with the structure and operation of the program. Areas for improvement included simplifying record keeping, payments with online systems, and developing approaches to strengthen carryover.

“It's Like Two Roles We're Playing”: Parent Perspectives on Navigating Self‐Directed Service Programs with Adult Children with Intellectual and/or Developmental Disabilities

“…Some reported challenges are widespread, such as finding and retaining workers and dealing with significant amounts of program paperwork, and also found in previous research (Gross, Wallace, Blue‐Banning, Summers, & Turnbull, ; Leutz, Warfield, Timberlake, & Giuseppina, ). Previous research also noted a dearth of program‐related information for some familial program representatives of young adults with IDD (Harry et al, ).…”

Family well‐being in a participant‐directed autism waiver program: the role of relational coordination

“…The ultimate goal is to advance children's basic adaptive and verbal skills and further their development of appropriate interactive and play skills (Leutz et al . forthcoming).…”