Questions Parents Ask and Helping Them Find Answers

/ July 26, 2016

By Julie Lounds Taylor

   About the Author

Julie Lounds Taylor is an assistant professor of Pediatrics at the Vanderbilt University School of Medicine and a Vanderbilt Kennedy Center investigator. She has been conducting research with families of adolescents and adults with autism spectrum disorder for the past 12 years, and her work has been funded by the National Institutes of Health and Autism Speaks. She currently serves as a public member on the U.S. Department of Health and Human Services’ Interagency Autism Coordinating Committee.

While all parents wonder what their children will do when they grow up, parents of children with disabilities bring a certain heightened level of concern to those questions.

“What is my son or daughter with a disability going to do after he/she leaves high school?”

“What services and supports are going to be available to support my son or daughter in achieving his/her hopes and dreams?”

As I was interviewing families of youth with autism spectrum disorders (ASD) who were preparing to leave high school, I learned that these questions do not have easy answers.   The adult service system in Tennessee and across the country is severely underfunded, but perhaps just as importantly, it is complex and difficult to maneuver. Many types of disability services are administered by different agencies, with eligibility criteria that depend on each other and services that must be obtained before other services can be accessed.

Many of our studies have shown the challenges that youth with ASD face during the transition to adulthood. Our research team wondered if part of the reason for these difficulties was that families were not able to access, in a digestible form, information about the range of services and supports that might be helpful to their child after leaving high school. And thus, the idea for the Volunteer Advocacy Program-Transition (or VAP-T) was born.

With the critical input of Vanderbilt Kennedy Center members Robert Hodapp, director of research for the Vanderbilt Kennedy University Center of Excellence in Developmental Disabilities and a professor of special education, Carol Rabideau, our VKC social worker, and Meghan Burke, a former Vanderbilt doctoral student, now at the University of Illinois, our team was able to obtain funding to develop the VAP-T. The VAP-T is based on Meghan’s long-standing Volunteer Advocacy Program at the Vanderbilt Kennedy Center, which trains parents and advocates about special education law and how to work with school systems. We thought we would be able to make a few “tweaks” to the school-aged curriculum to make it appropriate for the adult service system. We were very naïve! In the fall of 2014/spring of 2015, we embarked on a year-long journey to try to squeeze the intricacies of the adult disability service system into a 12-week series. Through that process, I gained an even greater appreciation for the complexity of the adult service system, and my admiration for families and individuals grew as I saw the challenges they face in obtaining disability services.

Now, we are in the process of testing out the 12-week program, to see if merely providing families information about adult disability services in an understandable and integrated way is enough to budge the needle on outcomes for their son/daughter with ASD. To test this question, we recruited 40 families of youth with ASD who were within two years of exiting high school, and randomly assigned one-half to participate in the VAP-T program in the fall of 2015 and the other half to participate in the program in the spring of 2017. Although we realize it isn’t ideal to ask some families to wait to receive the information, this research design will allow us answer the important question of whether participating in the VAP-T is helpful to youth and their families. Our initial findings are promising; families who participated in the VAP-T feel more empowered, know more about the adult service system, and feel more comfortable and skilled in advocating on behalf of their son or daughter. We are currently collecting information on services that the youth are getting, as well as other transition-related outcomes to determine if this increased parental knowledge and empowerment leads to improved outcomes for the youth.

To date, we have only been able to offer the VAP-T to a relatively small group of research participants – all families of transition-aged youth with ASD. Once we are able to demonstrate that this significant investment of families’ time leads to better outcomes for youth, we are excited to think about the next steps for this program and how we can offer it to the community more broadly. It is our hope that, ultimately, the VAP-T can be offered as part of a suite of services and supports (including self-determination interventions for youth, employment services and supports, etc.) that families and youth can access to help make the transition to adulthood a smoother experience.

Although I have been conducting research for a number of years now, this project has been especially exciting for several reasons. We have learned so much from the families who participated in our earlier research projects – not only about the challenges that they face during the transition to adulthood but also about their sons’ and daughters’ strengths, hopes, and dreams. Their experiences inspired us to – sooner rather than later – figure out a way to use what we have learned to try to help smooth the transition process.

Another exciting aspect of this project is that it has been, from the beginning, a partnership between researchers, parents, and the local developmental disability community. We are so grateful for parents’ willingness to commit to helping us test and refine the program, not only allowing us to gather information on their family and their son/daughter over a several-year period, but also by commenting on what is and is not working for each week of the workshop series itself. An Advisory Committee of parents and advocates, researchers, and service providers gave us extensive feedback on the VAP-T curriculum, and the various specific topics of that curriculum have been developed with detailed input from disability advocates and service providers (often, these people later volunteered their time and expertise to be the content experts for the workshop series). This entire project is, to me, the definition of it “taking a village” to accomplish change in the lives of individuals with ASD and their families.

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