School districts provide a range of services to students with intellectual disabilities. WNIJ’s Peter Medlin has part 1 of his 3-part series about what happens when those students become adults and transition into adult life. Listen to part 2 and part 3.
In Illinois, students with disabilities can receive public school services through the end of the school year when they turn 22 years old.
Jessica Marcellis-Montavon is the director of the DeKalb School District’s transition program. It’s an extension of the high school’s special education program. Her students are between 18-22 years old and typically haven’t received a high school diploma.
“What we really start to focus on is vocational experiences and independence in daily living,” she said.
Marcellis-Montavon says they prepare them to transition to adult life by working on life skills and spending time volunteering. Among several community partnerships, they garden at Walnut Grove Farm and do laundry and socialize cats at Tails Humane Society.
They only have six students in the program this year, but expect 10 next year, and 16 students the year after.
A lot of the transition program’s efforts are to help students with intellectual or developmental disabilities and their families understand the web of services and agencies they’ll need to work with after they leave the public school system.
In fact, those conversations begin much earlier. In Illinois, the law requires all students with IEPs to have a transition plan in place by 14 and a half years old.
Marcellis-Montavon says it’s when they start conversations about a student’s future -- college and career. Soon after, it’s time to think about guardianship, savings accounts for people with disabilities known as ABLE accounts, and Medicaid.
“Once they hit 18, most of our students can access Medicaid, which is funds for their family at that point, to help continue to support their young adult with a disability,” she said. “That's been a blessing for many families once they get through that. It’s a very tedious process.”
The other major task is getting the student onto the PUNS list. It’s a state-run database of people with developmental disabilities who are seeking state funding to help pay for services. They could be looking for in-home support, placement in a residential setting, or supported employment.
“For most families, it would be cost prohibitive to pay out of pocket for those services,” said Marcellis-Montavon.
This is where several issues come into play for the families of students with disabilities. One: you can’t both receive state PUNS funding and continue in the public school program. And two: you can wait on the PUNS list for a long time before you’re selected to receive funding.
In 2023, most people who were approved had been on the PUNS waitlist for a little over 4 years. That’s actually an improvement from where it was. In 2019, most people had been waiting over seven years.
Since you age out of public school services at 22 -- it can be a big problem if, by that time, they haven’t been approved for state funding. Right now, advocates say it means many young people with intellectual disabilities have, essentially, a gap year or two without adequate services.
Kyle Gerdes with the DeKalb School District says it’s a tough system for families.
“I think the hard part is knowing that that same type of structure and support may not continue for very long after they're with us,” he said.
The main reason why the waitlist is shorter now than a few years ago is because of the LIGAS consent decree. It’s federal oversight of Illinois’ adult services delivery system.
Kathy Carmody is the CEO of The Institute on Public Policy for People with Disabilities, which represents service providers. She says, basically, the decree means the state agreed to provide access to adult services within five years.
Carmody says the state has made strong strides over the past few years.
Now, the state of Illinois has asked to end the consent decree, despite being out of compliancesince 2017. She says there’s a general sentiment among community agencies and families.
“We feel that a lot of that has been done because of the federal court involvement, and we want to see that forward momentum continue,” said Carmody.
But, once adults with intellectual or developmental disabilities are approved for services, where do they go? College? The workforce? Home?
Once they leave K-12 education, many families need home, community, or residential services.
And a staffing crisisthere means that their time on long waitlists may be far from over.
In Part 2 of the series, we explore the major challenges services providers and families of people with intellectual or developmental disabilities face.
