By Jennifer Kiilerich
Imagine applying to a support service that turns down 66 percent of first-time applicants. Then imagine navigating that-a process which can involve multiple attempts, forms, taking time off work for meetings, and more-in English when it may not be your first language. That experience is the reality for many Latino families trying to obtain federal benefits like supplemental security income for their young-adult children with autism.
Researcher Meghan Burke has long worked to help people with autism get the services they need to thrive, and now she is turning her attention to the Latino population. Overall, she said, those with autism drop off a services cliff at age 18. More than 75 percent of people with disabilities receive no services after high school, due in part to a lack of advocacy and a lack of understanding around access. For Latino families, language and cultural barriers add extra layers of difficulty.
With a new $600,000, three-year grant from the W.T. Grant Foundation, Burke, professor of special education at Vanderbilt Peabody College of education and human development, will investigate a model that teaches Latino parents to become advocates for their 18- to 25-year-old children. "The adult service delivery systems are inherently hard to navigate," she said, "And they're even more complicated when you don't speak the language."
Julie Lounds Taylor, professor of pediatrics and Vanderbilt Kennedy Center co-director, along with Burke, initially created ASSIST, an English-language parental advocacy training model that helps young adults with autism access services. Burke worked on the project through her role at the Kennedy Center, a leading research hub for developmental disabilities.
Learn about ASSIST and view English-language videos about adult disability services here.
Janeth Aleman-Tovar, one of Burke's past doctoral students from the University of Illinois, took that model one step farther for her dissertation, adapting it into Spanish and igniting the idea for a larger project. The result? ASISTIR, or Supporting our Children with Autism to Obtain Transition Services (Apoyando a nueStros hIjo/as con autiSmo obTener servIcios de tRansición).
View ASISTIR's Spanish-language videos about adult disability services here.
Piloting better outcomes
In 2024, ASISTIR grew into a National Institutes of Health-funded pilot study: Burke and her team partnered with The Arc of Illinois, part of a national disability advocacy group, to deliver 12 two-hour training sessions to parents via Zoom, in a group format. On average, said Burke, "their autistic youth got one more service than our waitlist control group six months later, which is huge." In addition, most showed measurable improvements in knowledge about disability services.
That understanding matters, because service disparities contribute to lower employment, lower post-secondary education enrollment and fewer community living opportunities for Latino autistic youth as compared to white peers.
The expanded study will test whether this cultural- and language-adapted advocacy training will successfully replicate the pilot results in other settings, including Arizona, New Mexico and Rhode Island. Ultimately, Burke's team hopes to drive better outcomes for Latino youth and families and create a curriculum that can be replicated across the country.
An expansive partnership
Partnering with The Arc has been key, said Burke. The organization helped her locate sites for the new study and has embraced the mission of the project. The Arc's national reach means that the work will be scalable at its locations across the United States.
"There is a real need for this work."
Rocio Perez, a program director at The Arc of Illinois, played a key role in the pilot study and will coach the three new sites on administering the curriculum. She said that during the pilot, parents made new connections with other families so that they felt less alone-an important aspect of the experience. "They were not afraid to ask questions," she said, with participants often sending follow-up thank-you emails and requesting more information. Perez was pleased with the accessibility and cultural sensitivity of the system, which featured videos entirely in Spanish and bilingual professionals who made presentations in Spanish.
"There is a real need for this work," said Burke. And as the multi-site randomized control trial launches, she hopes to soon show what an impact better access to information can make for Latino adults with disabilities-and their families.
