CONTACT: Sharita Forrest, Education Editor 217-244-1072, slforres@illinois.edu
CHAMPAIGN, Ill. — 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, a 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.
This year, ASSIST is being offered to families at additional sites – two in Madison, Wisconsin, and one in Nashville, Tennessee, where the study’s principal investigator, Julie Lounds Taylor, is a professor of pediatrics at Vanderbilt University Medical Center and an investigator at Vanderbilt Kennedy Center.
ASSIST evolved from a smaller trial that the researchers conducted in Tennessee with 45 parents of young people with autism who were within two years of high school exit.
Parents who participated in the group-based intervention demonstrated significantly improved empowerment, advocacy skills and knowledge compared with the parents assigned to the waitlist control group, who had not yet had the opportunity to participate in the meetings, Burke said.
Young adults whose parents participated in the meetings were more likely to be employed or pursuing postsecondary education at the one-year follow-up.
“As we’ve been delivering this program in Tennessee and working to make it nationally relevant, I’ve been overwhelmed by the responses from families who are hungry for information on adult services that is easy to digest and actionable. We are happy to be able to fill that gap,” Taylor said. “Ultimately, we hope that the ASSIST program will help parents get the best mix of services to support their sons and daughters on the autism spectrum in reaching their goals and realizing their dreams.”
Up to 60 parents of youths with autism can participate in the Naperville sessions, which will be held at Little Friends Inc., 1127 Thackery Lane. The group training sessions will be Mondays from 6-8 p.m. Feb. 24-May 18. Another group training will be offered in fall 2020.
Each meeting will begin with a video about the service to be discussed that night, followed by a local expert explaining how it works in Illinois, Burke said.
The parents will be randomly assigned to either the group meetings or the waitlist control group. Parents in the control group will receive all of the written materials handed out at the group meetings and have the opportunity to attend the meetings later.
The researchers will track the young adults’ and their parents’ progress for up to 3 1/2 years through follow-up interviews and questionnaires. Families can receive up to $425 for completing all parts of the study.
Families interested in participating should contact Molly Buren, a visiting project research coordinator at the U. of I., at 773-290-9956 or mburen2@illinois.edu.