When young adults with developmental disabilities graduate from high school in Illinois, they stop receiving the daily support they were once getting through Individualized Education Plans at school.
In Illinois, a young adult with developmental disabilities can no longer receive school-based special education and transition services after they turn 22. And while the Illinois Department of Human Services’ Division of Developmental Disabilities provides Medicaid waivers for state residents, the Prioritization of Urgency of Need for Services (PUNS) waiting list to sign up for Medicaid benefits includes nearly 18,000 people. They will, on average, wait four years to get funding from the state.
“Applied Behavior Analysis — the scientific study of human behavior to improve people’s lives in hopefully meaningful ways — is typically associated with children with autism,” said Tony Russo, who started LifeSpeed: Behavioral Support Services in 2013 to provide Applied Behavior Analysis therapy as a small nonprofit, and expanded from Oak Park to 7249 Madison St. in Forest Park in 2023. “The adult world is such a unicorn. There’s just not a lot of supports, or they are very traditional, and I think we’re a bit abstract.”
To address the statewide gap in services for adults with developmental disabilities, earlier this year, LifeSpeed launched its CORE day program for adults ages 18 to 45. CORE aims to teach — as the acronym represents — Community, Ownership, Readiness and Empowerment to adults with developmental disabilities or cognitive disorders who have aged out of school-based care.
Through CORE, participants work with therapists on social and life skills, independence, building confidence and community engagement, “flexibility, tolerance, ensuring that you can tell the difference between a friend, a stranger, and an acquaintance. These are the things that matter when you’re out and in public and you’re hopefully engaged meaningfully in life,” Russo said. “Whatever your potential is, I want you to get as close to that as possible.”
Sid Sehgal, LifeSpeed’s adult programming director, said every CORE participants’ takeaway from the program will be different. For example, he said one of the participants used to not leave his parents’ house but now comes into LifeSpeed three days a week.
“We are providing a safe space where they can still feel empowered to say ‘No’ or ‘Yes,’ as long as you are doing something meaningful, so that you can lead an independent or semi-independent life in the future. That’s the thing we are looking for,” Sehgal said.
Though CORE currently has three participants who work with two therapists and a Board Certified Behavior Analyst, the program has room for 10 participants, Russo said. And every day looks different for those participants — from going to a movie to getting haircuts to helping out in the community.
CORE has volunteered with Beyond Hunger’s food pantry, Animal Care League, the Oak Park Conservatory and the La Grange Public Library. Russo said CORE is open to partnering with local businesses to work on participants’ skills — even if it’s just to help clean up the business at the end of the day.
“It seems menial,” Russo said, “There are so many opportunities for growth, for purpose, for cohesion.”
Serving a need
After Russo became a Board Certified Behavior Analyst, he launched LifeSpeed in 2013 for a couple of people who “didn’t necessarily have the robust supports they needed at that moment,” he said. “We noticed so many deficits in the population that we were supporting that we said, ‘Ideally, if we could reverse engineer and go back in time, how would we do it?’ And then we started to do it.”
In 2020, LifeSpeed opened an Early Learning Center in Oak Park to serve children with autism.
“I always wanted to work with adults,” Russo said. “I would’ve chosen this over the early learners all day. However, I do feel like having both points of reference now is a more holistic picture. I see what early intervention looks like, the trials and tribulations.”
“It’s good perspective of where the deficits might be and what we can work on,” Sehgal agreed. “If I had to go back and work with a kid, I would work on what skills they would need in the future because now we have seen this side.”
Before opening the Early Learning Center, Russo worked to support agencies that provide care for large groups of people with developmental or cognitive disabilities, helping often-overworked staff to support their individual clients.
“It might look like playing a game, but it involves a lot of skills: Participation, turn taking, communicating, cleaning up, being responsible,” Russo said of the one-on-one care LifeSpeed provides. “We are a small, quality-over-quantity niche.”
“It’s one staff member for like 10 people,” Sehgal said of the participant-therapist ratio at larger agencies. “So if somebody is having a hard day, you can’t go out. But that’s not the case here. If someone’s having a hard day, they can stay back, and the rest of the group can still go out and do something.”
When LifeSpeed’s Early Learning Center in Oak Park became too small, the nonprofit made the space into an office and moved to Forest Park. Today, the Early Learning Center serves about a dozen children and is filled with a small jungle gym, trampoline and sensory swings.
“Every space I’ve ever had hasn’t been foot traffic friendly. This is a vibrant community. It’s really cool,” Russo said of Madison Street.
For more information on the CORE day program or to schedule an intake meeting, please visit www.uptolifespeed.com.