Equipping Parents on the Road to Employment

/ October 5, 2021

By Janet Shouse

Many young adults with disabilities want what we call competitive, integrated employment; that is working at a job they enjoy with non-disabled co-workers, in a typical workplace setting, and getting paid what other folks get paid. We also know many parents and siblings want that kind of employment for their loved one.

Research has shown that the expectations of families that their loved one will be employed is the strongest indicator that a student with disabilities is working after they graduate or exit high school. But many families have difficulties imagining what employment will look like for their son or daughter with intellectual and developmental disabilities. They aren’t sure how to pursue employment for their young adult or how to get the supports or accommodations that may be needed for that young person to be successful in employment.

This is a significant issue, for individuals with disabilities, for their families, for local businesses, and for our economy. Across the United States, fewer than one-fifth of adults with IDD hold jobs in their local community. Here in Tennessee, only 16% of working-age adults with IDD are employed.

My colleagues at the Vanderbilt Kennedy Center and Vanderbilt University—Emily Lanchak, Laura Berry, Erik Carter, Elise McMillan, and Julie Lounds Taylor—have begun a research study called the Employment Pathways Project. The idea behind this research is to use the experience, expertise, and encouragement of parents or family members who have successfully navigated the path to employment to provide the support and guidance these family members need to successfully find employment for their young adult with IDD.

Over the next few years, the project team will:

  • Develop a practical mentoring intervention package that provides family members with relevant information and personalized mentoring.
  • Evaluate the intervention’s impact on employment outcomes within a rigorous study.
  • Examine how the intervention is implemented.
  • Disseminate resources in widespread ways.

Over the years, many efforts have been designed to provide families with information and resources to better support persons with IDD. However, these efforts have largely been informational, and none have used a mentoring approach in which family members work closely to support one another. None have looked at whether these efforts result in competitive, integrated employment for adults with IDD.

In the initial stage of this project, 60 parents and siblings of individuals with IDD (ages 16 and above) were interviewed. The questions focused on what they consider to be “meaningful employment” for their loved one, what barriers have they found to integrated employment, and what do they see as needed to help their loved one obtain competitive, integrated employment. As one mother of 21-year-old daughter with IDD shared, “I’ll be honest, sometimes it feels like a full-time job trying to get in touch with resources and figuring out what we can do.”

If you want to read more about some of their initial findings, you can do so here:

You will be hearing more about this project as the research progresses. I am excited by the idea of parents mentoring parents in the path to employment. As the writer for “Rise to Work,” I often get calls and emails from families looking for information, resources and help in getting a son or daughter (or sometimes a sibling) into employment. I’ve heard the struggles families face and their not knowing where to turn for advice. Having the opportunity to talk with someone regularly who has been there and done that is so useful for so many of us. I look forward to the day when this intervention is rolled out!

As always, if you have questions or concerns, please email me at janet.shouse@vumc.org. Thanks for reading!

Janet Shouse smiling outside
Janet Shouse is a parent of a young adult with autism, and she is passionate about inclusion, employment of people with disabilities, medical issues related to developmental disabilities, supports and services, public policy, legislative initiatives, advocacy, and the intersection of faith and disability. She wears many hats at the Vanderbilt Kennedy Center, including one as a disability employment specialist for TennesseeWorks.


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