Advocating for SupportS to Improve Service Transition (ASSIST)

The transition to adulthood is a time of high risk for youth with Autism Spectrum Disorders (ASD), who often come across tough experiences in their academic, vocational, and social lives. Difficulties in these and other areas become more apparent during the transition to adulthood when youth are gaining independence. Frequently, these challenges are made worse when autistic individuals and their families have problems accessing adult services. The adult service system is hard to navigate, and many youths on the spectrum face obstacles when being granted eligibility. Parents play a vital role as advocates in obtaining the services that satisfy their young adult's unique needs.

The goal of the ASSIST (Advocating for SupportS to Improve Service Transition) program is to equip parents with the knowledge, skills, and empowerment necessary to effectively advocate to expand services or resources available to their youth. Notably, because the adult service system landscape differs from state to state, previous parent advocacy training programs have only focused on state-specific information. We developed ASSIST to be nationally relevant. We have done this by presenting general aspects of nationally relevant services that can be tailored to be applicable across states. The information for each topic is presented using an introductory video and local expert presentations.

The ASSIST Program

ASSIST is a 12-week parent training program that helps parents advocate for services for their young adults on the autism spectrum. This project's primary goal is to improve the transition to adulthood for youth with autism spectrum disorder (ASD).

When we tested a similar training program, focused on adults' services in Tennessee, we found that compared to the control group, parents who took part in the program:

  • Knew more about adult services and supports
  • Felt comfortable and prepared to use that information to advocate for services for their son or daughter

We also had some evidence to suggest that participating in the program led to better post-school employment and post-secondary education outcomes and improved access to services.

These findings were very promising, but this initial program only took place in Tennessee. Service systems vary from state to state, so we wanted to build upon what we learned and see if we could expand the program to help as many families as possible. We decided to test a program that would be relevant across the nation, no matter what state you are in.

The ASSIST sessions provide parent participants with locally relevant information about:

  • The importance of person-centered thinking
  • Adult services and other resources
  • Rights and responsibilities within service systems
  • The best place to contact for the help needed
  • The value of being assertive
  • Maintaining motivation to learn about adult services

Each of the 12 sessions includes 1-3 topics, has an introductory presentation, a local expert who provides information specific to the participant's state, and mixes content and discussion.

Study Purpose and Participants

The purpose of this study is to develop and test the success of a national curriculum of the ASSIST program. The ASSIST project has enrolled over 180 families and will follow them for over 3 years to measure this nationally relevant program's efficacy.

Because we have modified program content to make it applicable to service systems across the nation, we are thoroughly testing the ASSIST program in three states with different service systems (Tennessee, Illinois, Wisconsin). We include the viewpoint of young adults with ASD in the data collection. We are examining how the ASSIST program influences youth outcomes. Finally, we explore barriers to participation and factors that make it more challenging for families to receive the services they need.

Recruitment for this study is closed. However, if you are interested in study participation, we have other current studies examining factors related to the transition to adulthood for youth with autism spectrum disorder (ASD) and their parents. Also, keep an eye out for future follow-ups to this study! If you want to learn more about ASSIST, please visit our ASSIST website HERE.

Study Research Team

  

Julie Lounds Taylor, Ph.D. (Lead Principal Investigator) is an Associate Professor of Pediatrics at Vanderbilt University Medical Center and an Investigator at the Vanderbilt Kennedy Center for Research on Human Development. Dr. Taylor is an international leader in the study of how to improve the transition to adulthood and adult outcomes for individuals on the autism spectrum.  With over 70 peer-reviewed publications, she has made important discoveries about the challenges many individuals face on the autism spectrum after leaving high school and the importance of engaging in meaningful work for positive behavioral development. She is working to leverage these findings into new programs – such as ASSIST – to support individuals on the autism spectrum and their families as they transition to adulthood. She regularly provides expertise in transition and adult-related issues to federal autism committees and initiatives.

  

Meghan Burke, Ph.D., BCBA-D (Site Principal Investigator) was an Associate Professor of Special Education at the University of Illinois at Urbana-Champaign and is now a Professor of Special Education at Vanderbilt University. Her research interests include parent advocacy, families (i.e., parents and siblings) of individuals with significant disabilities, and disability policy. Dr. Burke's research examines how parents advocate for services for their offspring with disabilities. She developed the Volunteer Advocacy Program, which trains advocates about special education law. Dr. Burke adapted this program into the Volunteer Advocacy Program – Transition (VAP-T), which teaches parents about the adult service system. The VAP-T is the intervention on which ASSIST is based. Additionally, Dr. Burke conducts research examining how siblings of individuals with disabilities transition to caregiving roles.

  

Leann Smith DaWalt, Ph.D. (Site Principal Investigator) is the Director of the UCEED (University Center for Excellence in Developmental Disabilities) at the University of Madison-Wisconsin, and a Senior Scientist at the Waisman Center. Dr. Smith DaWalt's research focuses on understanding the impact of having a child with a developmental disability on the family as well as the role of the family and community in supporting healthy development for individuals with disabilities such as autism spectrum disorders (ASDs) and fragile X syndrome (FXS).

 

Robert Hodapp, Ph.D. (Consultant) is an Associate Professor of Special Education at Vanderbilt University. Dr. Hodapp's current research interests include the developmental approach to intellectual disability, mother-child interactions with children with disabilities, and development in children with fragile X syndrome, Down syndrome, and other genetic disorders of intellectual disability. Also, in his role as Director of Research for the Center's UCEDD, Dr. Hodapp oversees the basic and applied research programs that are conducted as part of the UCEDD. He develops the UCEDD's research agenda in consultation with the UCEDD Operating Committee and the Community Advisory Council.

Carol Rabideau, L.C.S.W.  

Carol Rabideau, LCSW (ASSIST Intervention Development Team Lead) is a Licensed Clinical Social Worker at Vanderbilt University Medical Center and the Vanderbilt Kennedy Center. With over 22 years of experience in mental health counseling, medical social work, supervision, and training, Ms. Rabideau provides future planning workshops as well as training on other topics. She provides assessments, crisis intervention, brief counseling, and referral services to individuals and families with developmental disabilities throughout their lifespan. Ms. Rabideau led the efforts to develop the ASSIST curriculum and served as the Tennessee-site facilitator for the program.