New project seeks to help Spanish-speaking families navigate adult IDD services

Many families of children with disabilities refer to the time when their child is reaching adulthood as “falling off a cliff,” because navigating adult disability services is so difficult when school services end. For Spanish-speaking families, this cliff seems especially daunting, but a new advocacy project aims to help families learn about adult services and how to access them successfully.

This project, initially based on the ASSIST Program offered in English by the Vanderbilt Kennedy Center several years ago, is called ASISTIR, and it is a 12-week program in Spanish for Latino families of youth with intellectual or developmental disabilities (IDD) to become better educated about adult disability services. Meghan Burke, Ph.D., professor of Special Education, leads the project, and her research team will test the program in three states, partnering with chapters of The Arc of the United States, to see if advocacy knowledge and skills can help families access services for their youth with IDD. The sites will be in New Mexico, Arizona, and Rhode Island, and the project is funded by a grant from the W.T. Grant Foundation. This will be a randomized controlled trial testing the feasibility and effectiveness of ASISTIR (Apoyando a nueStros hIjo/as con autiSmo obTener servIcios de tRansición).

“The intervention will be delivered entirely in Spanish,” Burke said, although bilingual families are welcome to join. “Compared to the general population, Latino, Spanish-speaking families experience unique and/or compounded barriers to service access, such as materials not available in English or a lack of interpreters.”

As students turn 18, youth with IDD begin to face the transition from school services to adult services. Unlike school, the adult service delivery system is fragmented, with each program having its own bureaucracy, application process, and requirements. Without supports and services, Burke said, adults with IDD have worse academic, social, behavioral, and economic outcomes. Latino, Spanish-speaking families face additional unique barriers related to language, cultural differences with service providers, and discrimination. Accordingly, Latino (versus white) youth with IDD receive fewer services and often face worse academic, social, behavioral and economic outcomes. Burke said she hopes this project can improve students’ trajectories.

The questions Burke and her team hope to answer are:

Do participants in ASISTIR demonstrate improved intervention targets (such as knowledge of adult services, advocacy skills, and empowerment) immediately after taking ASISTIR?
Do the students of participants experience greater quality and coordination of services six months after ASISTIR?
Do the students experience improved academic, social, behavioral and economic outcomes one year after taking ASISTIR?

The project aims to enroll about 70 families of students with IDD who are 18 or older at each of the three sites. Altogether, there will be 210 families. The team expects to begin enrollment in the fall.

“We are not yet enrolling participants,” Burke said. “However, if people are interested and want to be contacted when we are enrolling participants, they can reach out to me at Meghan.burke@vanderbilt.edu.”

Participants will take pre- and post-program surveys. Some additional evaluation data also will be collected. And individuals who are initially in the control/wait list group will get the opportunity to take part later. The researchers will conduct a cost analysis with The Arc chapters on the intervention.

Burke, whose primary line of research includes developing and testing interventions to improve access to services and, ultimately, functioning among individuals with IDD and their families, is eager to share helpful resources.

“In ASSIST, families watched 10-to 12-minute videos of nationally relevant information about adult disability services. These videos are freely available,” she said. Access the Proyecto ASISTIR videos below.

Top photo by Getty Images/iStockphoto