Breaking Ground 102 - New Vanderbilt Centers Prepare Youth, Parents for Life after High School

By Elizabeth Turner

Vanderbilt Kennedy Center (VKC) researcher Erik Carter, Ph.D., has started two new Rehabilitation Research and Training Centers (RRTCs). The RRTCs focus on supporting youth with disabilities and their parents in the transition to adulthood, employment, and adult services.

“This work is part of VKC’s emphasis on employment, which is a key part of our work as a Center of Excellence in Developmental Disabilities (UCEDD),” said Elise McMillan, VKC UCEDD Director. “These new RRTCs allow us to do more research, training, technical assistance, and information sharing.”

Erik Carter said, “Many of us know firsthand the impact a good job can have on our lives. Through our UCEDD work with TennesseeWorks and Transition Tennessee, we have seen so many examples of people with intellectual and developmental disabilities (IDD) flourishing because of the income, relationships, and sense of purpose that comes from having a job they love. But too many Tennesseans with disabilities struggle to connect to these important experiences.”

Statistics show that most youth and young adults with IDD have goals of working in their community alongside people without disabilities. Yet, integrated employment is still not widespread. In Tennessee, only 16 percent of working-age adults with IDD are employed. Most adults with IDD live with their parents. Only 25 percent are able to get long-term services and supports (like Medicaid waivers) to help them with employment and other goals. This means that for many adults with IDD, their parents are the most important sources of support and guidance in their lives.

Yet most parents say they lack the information and support they need for early adulthood. In a recent study with almost 2,000 parents of Tennesseans with IDD, 57 percent said they were not at all familiar with programs for employment for people with disabilities, and 23 percent were only a little familiar.

Erik Carter will work closely with Elise McMillan and Julie Lounds Taylor, Ph.D., Associate Professor of Pediatrics and Psychiatry & Behavioral Sciences, to lead the two training centers.

“We pursued these two projects because we wanted to identify effective ways of connecting more people to employment,” said Carter. “Also, we wanted to develop approaches that could be used widely across the state and around the country.”

Each of the centers has a different, specific focus:

Employment of Transition-Age Youth with Disabilities

Carter and his team are using this training center to look at how paid work during high school affects youth with severe disabilities after they leave school.

The end goal is to:

  • better understand the impact of employment on students.
  • develop practical, free resources to help schools around the country put the best ideas into practice.

In this project, high school students with severe disabilities will be randomly assigned to one of two study groups:

  1. Those whose school transition program will involve them in paid work. The program will use a supported employment approach during their final year of school.
  2. Those whose school transition program will work on career preparation and exploration without paid employment.

Staff for the center will support school teams and program participants by helping with:

  • employment-related assessments,
  • person-centered planning with family members,
  • job development,
  • on-site support,
  • skills training in the classroom,
  • and other resources.

This spring, Carter and his team held focus groups and an advisory council meeting. The groups helped plan how the Center will help students, schools, and families, and create needed materials. The input helps the center make sure the program will be doable in most schools.

“We will be recruiting participants in waves over three years,” Carter said. “We will be partnering with schools, agencies, and disability organizations in Middle Tennessee to ensure we have a strong and diverse sample.”

For more information about this transition training center, visit https://transition.vcurrtc.org.

Employment of People with Intellectual and Developmental Disabilities

The second new training center will develop a mentor program. Parents whose family member with IDD has been successful in employment will mentor parents whose family member with disabilities has not yet found a job. The center will also share information with parents whose family member wants to find a job. Through mentoring and sharing information, families can get the help they need for their family member to find a job they love.

This spring, the Center’s team listened to the stories and advice of more than 50 parents through interviews and focus groups. They also met with an advisory council for advice on how to design the program so it can make a real difference for families.

Next fall, the Center will pilot a first version of the program focused on the expectations, knowledge, and goals families have for integrated employment. Familes who participate in the program will get accessible and relevant information about the benefits of integrated employment and the path to work. Participants will then be matched to one or more mentors who have personal experience supporting a family member with IDD in finding integrated employment. Mentors will receive training, resources, and ongoing support from the project.  This will equip them to provide encouragement and direction for the parents they are mentoring.

For more information about this employment training center, visit https://idd.vcurrtc.org/.

Elizabeth Turner is the associate director of VKC Communications.