Support services become more difficult to navigate once a person with disabilities turns 18 and/or has graduated from the school system. The Volunteer Advocacy Program-Transition (VAP-T) aims to make that transition smoother for parents and self-advocates through a model 12-week program.
“The idea for the VAP-T grew organically through my research experiences and conversations with other Kennedy Center investigators,” said Julie Lounds Taylor, Ph.D., assistant professor of Pediatrics and Special Education and VAP-T director. “I had been running a study of families who had sons/daughters with autism spectrum disorder (ASD) who were in their last year of high school. When I spoke with families, it was clear that they had no idea what resources and supports would be available to them when their son or daughter left high school. There seemed to be few places where they could get that information, and thus they were limited in how much they could really prepare for their son/daughter’s transition out of high school.”
After hearing parents’ concerns, Taylor began talking with colleague Bob Hodapp, Ph.D., professor of Special Education and director of the Volunteer Advocacy Program (VAP), a program of the VKC University Center for Excellence in Developmental Disabilities (UCEDD). Among the topics of conversation was the lack of information on transition services for students with disabilities who were about to enter adulthood.
“VAP is a program that trains advocates about special education services and students’ rights under special education law,” said Taylor. “I kept thinking how nice it would be to have a similar program that could train parents about the adult service system, not only what services might be available, but practical ‘insider’ information about how to advocate most effectively for services and supports.”
About that time, the National Institute of Mental Health (NIMH) called for pilot intervention studies to improve service access for youth with ASD during the transition to adulthood. Seeing a potential opportunity, Taylor, Hodapp, VKC UCEDD social worker Carol Rabideau, LCSW, and Vanderbilt Special Education graduate Meghan Burke, Ph.D. (now assistant professor of Special Education, University of Illinois Urbana-Champaign), successfully obtained an NIMH grant to adapt the VAP to train parents about adult services.
Participants take part in 12 weekly 2.5-hour sessions at no cost to them. Attendees are parents of sons or daughters with ASD who are within 2 years of high school exit, either before or after. Each week, coordinators bring in local experts to discuss a specific service, steps involved in receiving that service, and ways to share resources with other families.
“Community members have extensive, real-world expertise in navigating the adult service system, and they volunteered their time to present to our research participants,” said Taylor. “The VAP-T would not be possible without them.”
Throughout the sessions, VAP-T program coordinator Carol Rabideau facilitates group discussion along with the subject matter experts who volunteer their time to make the presentations.
“Conversations are many and varied. We talk about all of the topics covered in the curriculum as well as their success stories, feelings of being overwhelmed, as well as hopes, worries, and dreams for the future,” said Rabideau. “It is an honor to work with parents of children with disabilities, to understand their experiences, to learn their joys and challenges, to help them find and understand resources, and to see their strength and determination in supporting their sons and daughters, as well as each other.”
Because this is an NIMH-funded research project, the VAP-T participants also played an integral role in examining how effective and impactful the training could be for families. Parents were randomly assigned to take the VAP-T training program in either Fall 2015 or Spring 2017. The lag between sessions allowed the coordinators to see if the transition to adulthood progressed differently for those who took the training versus those who did not. All families participated in data collection in Summer 2015, Winter and Summer 2016, and Winter 2017.
“The VAP-T is an intensive time commitment – especially for busy families – so we want to see whether this investment leads to benefits for families,” Taylor said.
Taylor and her VAP-T colleagues recently published their findings in the March 2017 issues of the Journal of Autism and Developmental Disorders. They found that parents had increased their knowledge about services and supports available to their adult children with disabilities. Parents who participated in the sessions also felt more empowered to advocate on behalf of their son or daughter. The training provided opportunities for parents to come together, find solidarity, and meet with representatives of various agencies that would provide important services in the lives of their adult children with disabilities.
“The defining feature of the VAP-T research project, to me, has been partnerships,” Taylor said. “The VKC IDDRC [Intellectual and Developmental Disabilities Research Center] and UCEDD were both integral in getting the project off the ground. It would be impossible to deliver the program without the disability community members generously giving their time to serve as local experts.
“In this project, we have partnered with research participants in a way that is unlike past research projects in which I have participated. We have asked for feedback on the VAP-T program at each step from our research participants, and have used that feedback to make extensive changes and improvements to the curriculum. The VAP-T feels like the embodiment of ‘it takes a village.’”
Elizabeth Turner is program coordinator for VKC Communications.