'Fixing the system' to better support adults with disabilities


Mike Holmes dreams of being a head basketball coach for a high school girls team. It might be possible. He's already an assistant coach for the Cincy Swish, a premier youth basketball team, and he serves as head coach for Swish Spirit, a team of disabled kids who love basketball.

He was one of the first individuals to receive help from the Starfire Council when in 2009 the organization changed the way it was helping developmentally disabled adults. Instead of keeping 150 adults in a day program or workshop where they might take a class like yoga or art, Starfire began helping participants integrate into their own lives, one by one.

Starfire's executive director Tim Vogt says that at that time, his team began noticing that they weren't really helping disabled people with their lives outside of the day program. Parents still openly wondered: "What's going to happen to my adult child when I die?"

"We started asking, what if we're accidentally replacing community?" Vogt says. "That was the big lesson. We were getting in the way of that relationship."

Based on that realization, Starfire decided to gradually eliminate the day program. They began working with one person at a time, learning about their interests, skills and goals.

"With some mentoring and some values, we would have to think about people differently," Vogt says.

Starfire eventually discontinued the day program in September. Now they have about 100 developmentally disabled clients who are discovering their interests, developing friendships and finding support in their communities. Thirty-five have also found jobs with help from the organization. Says Vogt, "It's the greatest professional accomplishment of my career."

It's an approach that Disability Rights Ohio is also happy to see. The organization filed a lawsuit against the state of Ohio last March in efforts to see more disabled people integrated into society with jobs and a supportive lifestyle.

"The lawsuit is about fixing the system at the statewide level, so that individuals as well as their families, can say what they want to do in their life," says Kerstin Sjoberg-Witt, director of advocacy for Disability Rights Ohio.
Kerstin Sjoberg-Witt, director of advocacy for Disability Rights Ohio
According to a Disability Rights Ohio fact sheet, the class-action lawsuit states that by using public money to segregate people with disabilities within institutional facilities, Ohio is in violation of the Americans with Disabilities Act, as well as the Supreme Court ruling in Olmstead v. L.C. Such institutions are called Intermediate Care Facilities, where disabled people live with other disabled people.

At least 40,000 people have asked for home- and community-based services that would help them live independently. But the state is moving too slowly and the wait list is too long, Sjoberg-Witt says.

Ultimately, more infrastructure that includes job training and access to transportation is needed. "We have to figure out what people are good at and how to train them," she says. "It's a skill set that needs to be developed and supported."

Vogt says that Starfire's approach is somewhat different because job placement isn't a top goal. They first focus on community and building support. A job may or may not happen.

"It starts with relationships," he says. "It becomes about local connections. It's no longer just about disability."

Vogt's team wants to understand each person individually, working to understand their passions and then maybe taking an artist to an art gallery or a sports fan to a baseball game.

"We want to know, who are you; are you spunky or thoughtful and quiet?" Vogt says. "It's a very smart and intentionally personalized approach."

The goal is to help a client discover something, he says. "Keep going until it's comfortable. Start small and align with who you are."

Vogt readily admits that it's not an approach that works for everyone. He estimates that about 10,000 developmentally disabled people in Cincinnati aren't getting the help they really need to be more independent.

And there is also a need for more money. Vogt says that as a nonprofit, Starfire gets some money from the state, but grants, fundraisers and donors also help pay the bills.

"We think there's a better way to use public funds (rather than putting people in day programs)," he says.

Holmes was one of the first former day program attendees that Starfire worked with, widening his world by connecting him with his passion for basketball.

"Starfire has helped me a lot," Holmes says, who was connected with Starfire team member Alyson Tsiominas, who is also an avid basketball player and coach.

Tsiominas, who owns the Cincy Swish, says Holmes has been her assistant coach for seven years, working mostly with fifth- and sixth-grade girls. "Through that, he's met other coaches, both high school and college," she says. "He's been on a recruiting trip and to tournaments. If I got hit by a truck tomorrow, he could coach."

Five years ago, Holmes got a job with GBBN Architects downtown. He works as a clerk and does odd jobs like taking care of the conference room or getting drinks for a meeting. He enjoys it, but not as much as basketball, he says.

"What I like the most is that I have my own office that comes with a view of downtown."

What's most important, Tsiominas says, is that Holmes now has relationships and friendships across the Tristate. Holmes lives with his parents in Anderson Township, but he has a list of people he can call on a Friday night to hang out with or go shoot hoops with.

It's what Starfire hopes to see for more and more developmentally disabled adults, but Vogt says it's not a fast process. He tells folks to, "Give it the rest of your life. It's OK with me to take 20 years to move someone out of a workshop."

Mostly it's important to move forward, working with people to create an independent life.

"We still have an obligation to invent a better future," Vogt says.
 
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