Vanderbilt Kennedy Center researchers are adapting a parent advocacy curriculum to improve transition from high school for youth with autism spectrum disorder (ASD) as they pursue postsecondary education and/or employment.
Much of the national research effort on autism spectrum disorder (ASD) has focused on early diagnosis and early intervention and school-age services. Yet children with ASD become adults who still need services and supports in order to have high-quality lives with their families in their communities.
“The transition to adulthood is especially difficult for youth with ASD,” said Julie Lounds Taylor, Ph.D., assistant professor of Pediatrics and Special Education and principal investigator of a 3-year grant, “Adapting a Parent Advocacy Program to Improve Transition for Youth with Autism” from the National Institute of Mental Health. “They lose the familiar structure of school and entitlement to many federally mandated services, and still often require assistance in employment and in activities of daily living. Despite the need for continued support, youth with ASD are less likely than those with other developmental disabilities to receive formal services after leaving high school.”
While pursuing a doctorate in Special Education at Vanderbilt, Meghan Burke, now assistant professor of Special Education at the University of Illinois at Urbana-Campaign, developed the Volunteer Advocacy Program (VAP), an intensive, 40-hour special education advocacy training curriculum for parent peer support.
“Initially, we had envisioned minor revisions to the VAP curriculum,” Taylor said, “but we’ve had to create a substantially different curriculum for the VAP-Transition (VAP-T) because of the complexity of adult service systems. It’s much more complicated for families than we had foreseen, which makes us hopeful that families who take part in VAP-T will benefit. The curriculum goal is to help families learn how to best navigate services for their sons or daughters. Our study aims to determine if participation is related to better access to services and better outcomes for the student with autism.”
During this initial year, Taylor has collaborated with Burke, Carol Rabideau, L.C.S.W., Robert Hodapp, Ph.D. (Special Education), Zachary Warren, Ph.D. (Pediatrics), Erik Carter, Ph.D. (Special Education), Elise McMillan, J.D. (VKC UCEDD and Psychiatry), and an Advisory Committee to develop the VAP-T curriculum.
“The Advisory Committee, made up of adults with autism, parents, and professionals, has been a huge piece of this,” Taylor said. “Their input has been invaluable in helping us decide on topics, how much information to provide, and how to deliver it.”
The VAP-T curriculum will be presented to families in 12 sessions, 2.5 hours per session, over 12 weeks. The pilot phase begins March 2015 with families whose children with ASD have already completed the transition from secondary education.
“We are so grateful to these families for wanting to participate, to give us their feedback about the curriculum itself,” said Rabideau, who will facilitate the sessions. “It will help us do our best job.”
Beginning in Fall 2015, the project will enroll families of youth with ASD who will complete high school in spring 2016 or 2017. They will be randomly assigned to a VAP-T course, since the study will evaluate timing as one factor in preparing for transition, as well as evaluating service access and transition outcomes. The VAP-T training also will be webcast, to evaluate whether families at distant sites receive similar benefits and whether the curriculum is effective in multiple locations, given the variations in services locally. A curriculum manual will be developed.
After the initial introductory session, the curriculum will first focus on person-centered planning, a structured process to help individuals with disabilities plan for their future in a way that focuses on their unique values, strengths, preferences, capacities, needs, and desired outcomes or goals. The final session will focus on advocacy and self-advocacy. The young adults with autism as well as their parents will take part in both these sessions.
Other sessions for parents will address postsecondary education, employment, SSI (Supplementary Security Income-Social Security), SSDI (Social Security Disability Insurance), Medicare and Medicaid health insurance, Medicaid waiver, and legal and future planning issues (e.g., conservatorship, special needs trust).
Across the 12 sessions, families will write a Letter of Intent. “This is not a legal document,” Rabideau said. “It’s a document full of information about how to support the family member with autism. It includes information about the family, medical care and therapies, routines, family traditions, behavior—all kinds of ways to support that person. Families will complete the Letter over the sessions, so that the process is not overwhelming.”
The pilot 12-week session will be webcast for participation by families in Memphis, led by Jenness Roth, M.Ed., family faculty coordinator, University of Tennessee Boling Center for Developmental Disabilities. A Memphis site also will be provided during the subsequent two years of the study.
“This study has the potential for tremendous impact,” Taylor said. “Although the transition to adulthood is a critical turning point in the lives of youth with ASD, few evidence-based interventions exist that families can draw from to improve this process and to promote positive young adult outcomes. If the aims of the study are achieved, the VAP-T has the potential to be rapidly adopted and broadly implemented.”
The study invites interested families of youth with ASD who will complete high school in spring 2016 or 2017 to contact Andrea Perkins, firstname.lastname@example.org, (615) 322-2943.
Pictured top of page: Work internships are useful for youth transitioning to adulthood. Photo courtesy Next Steps at Vanderbilt.