22: What Do I Do? 

Carlos Mejia, who graduated from an occupational high school for students with disabilities on Chicago’s Northwest Side seven months ago, wishes he could walk the halls again. He misses seeing his friends every day, attending class, enjoying fourth-period lunch, and joining the bowling club at Vaughn Occupational, a Chicago public school. “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 is autistic and has epilepsy.

 Mejia’s parents miss the structure, routine, and skills that the school provided for their son. Aside from the intellectual foundation, Vaughn taught him how to use public transportation, shop for groceries, and use Google Maps to navigate.

As graduation was approached, his parents were given a list of local day and vocational 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,” said his mother Maria. 

However, the Mejias quickly realized that without funding provided by Medicaid, programs were prohibitively expensive. Furthermore, Carlos wants to work. He has a talent for memorizing and organization. He says that his dream job would be in a bookstore.

For the time being, Maria Mejia has been filling Carlos’ days with an occasional park district program and free classes.  She  also spends her time calling various state organizations to inquire about funding — some of which the Mejias initially requested for when Carlos was approximately five years old. Her son is one of tens of thousands of Chicagoans with intellectual disabilities who have graduated from high school and are now stuck at home.

As they face financial delays and a confusing service system that many characterize as a “maze,” disabled young adults risk losing the skills they fought so hard to learn in school. “It is very much being pushed off a cliff, without any resources,” said Josh Long, chief of the Chicago Public Schools’ Office for Students with Disabilities. He noted that the school district has committed “millions of dollars, per federal law, in special education from [age] 3 to 22 in a public school setting.” 

Long was the principal of Southside Occupational High School for 14 years before going to the district’s central office. He has repeatedly observed how graduates “go home, sit on the couch, have a sedentary lifestyle.” As a result, lots of young people in the city are without opportunities for their futures. 

The Arc of Illinois estimates that around 300,000 people in Illinois have autism, cerebral palsy, Down syndrome, or other intellectual and developmental disabilities. Although the exact number is difficult to determine locally, Kimberly Mercer-Schleider, head of the Illinois Council of Developmental Disabilities, estimates that 60,000 people with developmental disabilities live in Chicago. 

Adrien Dancy, 33, is one of them. He graduated from Southside Occupational ten years ago, and he volunteered at Stroger Hospital, cleaning the cafeteria and refilling the soap dispensers in the bathrooms. He also learned how to pack food in the school’s mock grocery store.

But it all ended when he graduated. Adrien, who has Down syndrome, has held a number of short-term jobs, according to his mother, Lynn Dancy: working in a warehouse, working at a park district kids program, and staffing an information booth at Chicago Bears games. However, long-term opportunities that accommodate his disability are limited. Adrien presently spends most of his days participating in recreation activities at Harrison Park, which is around a 40-minute Pace bus commute from his Far South Side home.

However, Adrien, according to Lynn Dancy, wants to work, particularly in the sports industry. “He’s just like everybody else: He sees what goes on in the world around him, and he wants to have that too,” she said. She added that Adrien would make a great employee. “He’s going to be on time. He’s going to do dwhatever 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 said.

However, helping young disabled people transition to the next phase in their lives is rarely simple. When students leave school, they are stopped in their tracks by a patchwork system including various government agencies, service providers and nonprofits—as well as lots of paperwork, phone calls, and complicated state websites filled with jargon and missing links.

Receiving services from the state often takes years. In 2023, 38 states had Medicaid home- and community-based services (HCBS) waiting lists.  There were 692,000 people on these waiting lists across the country, with an average wait time of three years.

In Illinois, The Division of Developmental Disabilities manages a key database known as the “PUNS list” of people with developmental disabilities who are awaiting funding for services such as day programs, employment coaches, and transportation. PUNS stands for Prioritization for Urgency of Need for Services. 

According to IDHS (Illinois Department of Human Services) officials, there are over 16,000 people on the PUNS list, with the average wait period for adults being 56 months, or just shy of five years. That’s down from 79 months in 2020, according to IDHS data shared with WBEZ.

I was fully included as a child. I attended public school from preschool to 12th grade. I went on field trips, narrated a play, and was invited to birthday parties. Outside of school, I took part in sports and went to summer camps.

As soon as I graduated high school, all of my school-provided support ended. I lost my biweekly physical therapy sessions. This led to my muscles becoming tighter, which caused pain. My joints also became stiff. It would be two years before I began receiving PT again.

I graduated from high school in 2018. Since then, inclusion hasn’t been talked about much. It’s as if society forgets about disabled people once they are no longer kids. For me, adulthood has been a lonely, isolating experience.

Just yesterday, I was talking to my mom about navigating bureaucratic systems. It often takes multiple forms, emails, and phone calls to ensure that your needs are met. There is often a lack of communication from people as well.

Disabled people of all ages deserve to be included in society. Navigating bureaucratic systems is a laborious, emotional process that can take years. For many people, being disabled often feels like a full-time job.

Sources:

Kang, Esther Yoon-Ji. “Young Adults with Developmental Disabilities Face a ‘cliff’ after They Graduate High School.” WBEZ, NPR, 15 Jan. 2025, http://www.wbez.org/education/2025/01/15/young-adults-with-developmental-disabilities-face-a-cliff-after-they-graduate-high-school. 

Kemp, Adam. “The Wait for Government Disability Services Can Last Years. Some States Are Trying to Change That.” PBS, PBS, 15 May 2023, http://www.pbs.org/newshour/amp/nation/the-wait-for-government-disability-services-can-last-years-some-states-are-trying-to-change-that. 

Smith, Tammie. “Waiting for Care: Three-Fourths of States Have Waiting Lists for Some Medicaid Home Care Programs.” KFF, KFF , 28 Nov. 2023, http://www.kff.org/medicaid/press-release/waiting-for-care-three-fourths-of-states-have-waiting-lists-for-some-medicaid-home-care-programs/#.