Program for Parents Aims to Help Youths with Autism Successfully Transition to Adulthood

by Sharita Forrest, UI News Bureau  /   Jan 16, 2020

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ASSIST – Advocating for Supports to Improve Service Transitions – is a program that trains parents of young adults with autism on services that are available in the community and empowers them to advocate for their child to help them successfully transition to adulthood.

A 12-week training program will be offered in Naperville, Illinois, for parents of youths and young adults with autism so they can help their children successfully transition to adulthood.

The Advocating for Supports to Improve Service Transitions program is open to parents of young people ages 16-26 who have an autism spectrum disorder.

The ASSIST training will include weekly two-hour group discussions covering a variety of topics, said Linda Tortorelli, the director of The Autism Program at the University of Illinois, who helped design the curriculum and will lead the training.

Parents will learn about advocating for the community-based supports and services their child might need, including obtaining Social Security disability and Supplemental Security Income benefits. Parents will also receive information on long-term planning for their child’s future through instruments such as special needs trusts, wills and guardianships.

“It’s very different navigating adult services,” said Tortorelli, who has a 30-year-old son with autism. “Once the child is out of school – and you don’t have that 8 o’clock to 3 o’clock structure – you have to be ready for them to have an adult life and be thinking about what does a meaningful life look like for them. How do you put it all together and help your young adult achieve the life you’re envisioning for them?”

Accessing community-based services for young adults with disabilities who have graduated or aged out of services provided through the school system often requires coordination with multiple agencies that are governed by differing laws, policies and eligibility criteria, said Meghan Burke, associate professor of Special Education at the U. of I. and principal investigator for the study’s Illinois site.

“In Illinois, adult services for the most part are often eligibility-driven as opposed to the entitlement-driven services provided through the school system, so it makes it a lot harder to access and navigate those services,” Burke said.

“Our project aims to educate and empower parents of young adults with autism; to equip them with knowledge about various services, including what they provide and their eligibility criteria; and to teach parents how to advocate for their child to access those services,” said Burke, who has a brother with a disability.

“Then parents should be better able to navigate these systems and access services, improving employment, postsecondary education and training, and independent living outcomes for their children.”

The ASSIST program is part of a multisite research project on improving outcomes for youths and young adults with autism that is funded by a $4.1 million National Institute of Mental Health grant.

Read the full story from the UI News Bureau...