A 'disability cliff' awaits many young adults after they graduate high school

Seven months after he graduated from an occupational high school for students with disabilities on the Northwest Side, Carlos Mejia longs to walk the hallways again.

“I feel kind of sad and devastated because I wish [school] could go all the way to 30 years old,” says the 23-year-old, who lives with autism and epilepsy.

He misses seeing his friends every day, going to class, having fourth-period lunch and participating in the bowling club at Vaughn Occupational, a Chicago public school.

Mejia’s parents, too, miss the structure, routine and skills that the school gave their son. Besides the academic foundation, Vaughn also taught him how to use the public transportation system, shop for groceries and use Google Maps.

As Carlos neared graduation, the Mejias were given a packet with resources for job training and day programs. “It was, you know, ‘Here’s the list, call them [and] find out.’ I didn’t want him just to stay home on his phone and his iPad,” says Maria Mejia, 61.

But the Mejias quickly discovered that programs were too expensive without the help of state funding for people with disabilities.

Moreover, Carlos wants to work. Gifted with a knack for memorization and organization, he says his dream job is at a bookstore.

“I want to sell books. I would like to organize some comic books, graphic novels, everything,” he says.

For now, Maria Mejia has been filling Carlos’ days with a park district program here, a free class offered by a nonprofit there, all while making calls to various state agencies to ask about funding — which the Mejias began applying for when Carlos was around 5.

Her son is among tens of thousands of Chicagoans with intellectual disabilities who have aged out of school and are now left hanging. As they confront funding delays and a complicated service system many describe as a “maze," young people with disabilities risk losing the skills they worked so hard to develop in school.

“It is very much being pushed off of a cliff, without any resources,” says Josh Long, chief of Chicago Public Schools’ Office for Students with Disabilities. This comes, he adds, after the school district invested “millions of dollars, per the federal law, in special education from [age] 3 to 22 in a public school setting.”

Long was principal at Southside Occupational High School for 14 years. He has seen repeatedly how graduates “go home, sit on the couch, have a sedentary lifestyle.” The result is lost potential.

Young adults with disabilities are ‘untapped resource’

About 300,000 people in Illinois live with autism, cerebral palsy, Down syndrome and other intellectual and developmental disabilities, according to advocacy group The Arc of Illinois. Although Chicago numbers are harder to pin down, according to Kimberly Mercer-Schleider, director of the Illinois Council of Developmental Disabilities, an estimated 60,000 people with developmental disabilities live in the city.

Adrien Dancy, 33, is one of them.

He graduated 10 years ago from Southside Occupational, where he was part of a volunteer program at Stroger Hospital, cleaning the cafeteria and refilling bathroom soap dispensers. He also learned to bag groceries at the school’s mock store.

All that ended when he graduated. His mother, Lynn Dancy, says Adrien, who has Down syndrome, has had a series of short-term jobs: working in a warehouse, helping at a park district kids program and manning an information booth at Chicago Bears games. But longer-term roles that take into account his disability are rare.

Adrien spends most days attending special recreation programs at Harrison Park, about a 40-minute Pace bus ride from his Far South Side home.

But Lynn Dancy says Adrien wants to work — especially in a sports-related field. “He’s just like everybody else: He sees what goes on in the world around him, and he wants to have that, too,” she says.

She also thinks Adrien would make a great employee.

“He's going to be on time. He's going to do whatever you tell him to do, and he's going to do it to the letter until whatever time you tell him to do it, because he's really on the clock,” she says.

Given the right support, many young adults like Adrien Dancy and Carlos Mejia can go right to work or training with their skills from high school, experts say.

“It most certainly is an untapped resource that is out there,” says Eric Edquist, a senior vice president at Ada S. McKinley Community Services, which provides various social services, including job training and placement.

Edquist says many studies “show what benefits there are in hiring people with disabilities. The retention rate is significantly higher — we see it in our own programs.”

A patchwork system and funding delays

But connecting young people to the next chapter of their lives is not simple.

When families leave school, they are stopped in their tracks by a patchwork system involving multiple government agencies, service providers and nonprofits — as well as mounds of paperwork, phone calls and convoluted state websites filled with jargon and missing links.

“It’s just a lot,” says Lynn Dancy. “It’s hard to get answers — just trying to go to this person, this person, this person, and then go right back where I started from in the first place.”

Rebecca Clark, with the Illinois-based Institute on Public Policy for People with Disabilities, says the adult disabilities system is “not person-centered. If we had person-centered systems, a person would be able to say, ‘This is what I want to do, when I want to do it, and this is how I want to get there,’ and behind the scenes, all the magic would happen.”

Instead, Clark says, “Very smart, intelligent guardians can’t figure out the path through the system.” The average family needs an expert or advocacy group to help their loved ones find jobs and services after graduating, she says.

The state says the Division of Rehabilitation Services within the Illinois Department of Human Services (IDHS) is the starting point for anyone with a disability looking for work. In 2023, the agency’s vocational program placed about 10% of people with intellectual disabilities looking for jobs, according to the state Division of Rehabilitation Services. State officials say it takes about two months to complete an individualized plan, which kicks off a series of steps toward employment that advocates say can take years.

However, families with children with developmental disabilities must also familiarize themselves with another IDHS entity, the Division of Developmental Disabilities. It oversees a critical database — known as the “PUNS list” — of people with developmental disabilities awaiting funding for services, including day programs, job coaches and transportation. PUNS stands for Prioritization for Urgency of Need for Services.

More than 16,000 people are on the PUNS list, and the average wait time for adults is 56 months — about five years, according to IDHS officials. That’s down from 79 months in 2020, according to IDHS data.

Service providers and advocates have noted this progress, saying Illinois has streamlined processes and increased funding under Gov. JB Pritzker’s administration. Still, Long and others say a waiting period of four to five years is not good enough.

“We really need to think about what we can do so that they can get those services within 30 days of graduating,” Long says.

Some say just getting on the PUNS funding list is a hurdle.

Holly Wiese, of the Autism Assessment, Research, Treatment & Services Center at Rush University Medical Center, says whenever she meets new Chicago families to discuss services for their children with autism, she asks them about their PUNS status.

“I'd say, more than half the time, we get, ‘What is PUNS?’ ” Wiese says. “It’s probably seven or eight out of 10.”

Wiese says the burden of managing the complex web of government and nonprofit agencies can be especially challenging for disadvantaged families.

“They’re also navigating socioeconomic, environmental and cultural challenges that they’re experiencing on the day-to-day, and so some of these things just fall to the back burner,” she says.

For families like the Dancys, geography also affects what jobs and day programs are available.

“It’s just nothing over here. It’s always on the North Side,” Lynn Dancy says. “They just seem like they have more opportunities, you know, more possibilities.”

Efforts to close the gap

Despite the ongoing frustration for families, there is some cause for optimism.

A state-mandated task force is working to identify regulations and systems that need to change to remove barriers to work for people with disabilities. Clark also touts After 22, a City Colleges of Chicago program that connects adults with intellectual and developmental disabilities to career training, educational opportunities and jobs.

Meg Cooch, chief of staff of the Division of Developmental Disabilities at IDHS, says Pritzker’s administration has nearly doubled her division’s budget, from $1.8 billion in 2019 to nearly $3 billion this year. She also says the state has invested millions to augment job coaches and other support.

And the state passed a pair of laws in recent years that focus on people with disabilities. One requires public schools to tell guardians about the PUNS funding database as soon as they begin discussing individualized education programs for their children. Another prohibits employers from paying sub-minimum wages to people with disabilities.

For its part, the Chicago Mayor’s Office of People with Disabilities opened a career center in 2022 to help job seekers and host job fairs. The center works with community groups and employers — Lincoln Park Zoo, Eli’s Cheesecake and Rush University Medical Center among them — to find opportunities for Chicagoans with disabilities.

Meanwhile, the calls and research continue for families like the Mejias and the Dancys, often with the help of advocacy groups like The Arc and the Family Resource Center on Disabilities.

The wait continues

Late last year, the Mejias learned that their case with the state’s Department of Rehabilitation Services was closed due to a miscommunication, and the family had to start the application process all over.

They also heard from IDHS that Carlos would likely be selected from the PUNS list by summer 2026, with services expected to start a year after that.

By then, Carlos will be 25, three years removed from high school and all the skills he developed there.

For now, Maria Mejia is trying her best to keep him busy.

“He loves learning and socializing, and I'm trying to have him do that with the resources that are available for him,” she says.

Lynn Dancy continues to look for longer-term work, as well as housing, on behalf of Adrien. At 66, she worries about what the coming years will hold for her son.

“I'm always thinking about his future, like after me,” she says. “From the day you find out that your child has a disability, this is your thought from Day One.”

Esther Yoon-Ji Kang is a reporter for WBEZ’s Race, Class and Communities desk. Follow her on X @estheryjkang. This story was supported by the Higher Education Media Fellowship at the Institute for Citizens & Scholars.