For developmentally disabled, options are few after high school

For an entire year since his graduation from Dunwoody High School, Tyler Luciani has struggled to find his purpose, to somehow give meaning to his life.

Unlike his younger brother Drew, who graduated with him that blessed day last May, attending college was not in Tyler’s future. He was born with a mild intellectual disability.

Indeed for thousands of adults with intellectual and developmental disabilities, leaving high school more often than not means leaving behind the very services and systems that helped make their lives make sense.

As graduates like Drew are going off to college or the job market, those with disabilities are entering a confusing maze of educational programs, government services and community-based agencies with unclear entitlements and differing eligibility criteria.

“Once you leave school, all bets are off,” said Tyler’s mom, Sissy Luciani. “The next part is trickier because you are on your own.”

It is also more costly. Tyler would like a job working with kids or pets, his mother said. Luciani spends nearly $90 a day to pay for Tyler’s job training program, the bus ride to get him there and a nanny to watch over him until she gets home from work.

“That’s what you do if you want your kid to be a viable part of society instead of just sitting on the couch,” she said.

According to Kathy Keeley, executive director of the nonprofit All About Developmental Disabilities, between 700 and 1,400 special needs students like Tyler age out of high school every year in Georgia with few opportunities beyond graduation.

“They go home to the bedroom or the couch,” Keeley said. “They end up depressed and isolated.”

Trade school is not an option, and while college is for some, Keeley said, Georgia graduates have only one choice if they want to stay in the metro area — the Academy for Inclusive Learning and Social Growth at Kennesaw State University.

Although more programs are under consideration at Georgia State, the University of Georgia and Georgia Tech, Keeley said they are still in the planning stages.

Nationally, unemployment for young people with intellectual and developmental disabilities hovers around 80 percent.

Keeley believes, and parents agree, that “supported employment” is the answer. Not only does it match individuals with developmental disabilities with employment opportunities in their communities, it provides needed follow-up support and job coaching to ensure they are successful and employers are satisfied.

“When they graduate from high school, most kids are not ready to embark on their careers, and that’s why they go to college or a trade school,” said Beate Sass, whose daughter Christine Sass has cerebral palsy, autism and a motor speech disorder. “Kids with developmental disabilities develop at a slower pace, and when they graduate high school, they need continued support.”

Sass said that without trained support, it’s very difficult for an individual with a developmental disability to get a job and be successful at keeping it, and even the most skilled parent is at a loss to help.

Like Luciani, Sass said Christine’s graduation from Decatur High last May was one of the happiest days of her life, but it was also very scary.

“They have so many supports that go away after they graduate,” she said. “You’re pretty much on your own to find some place for your child.”

It took months but Sass said she found Christine a place at the Community School in Decatur in its Young Adults in Transition Program.

Keeley said a coalition of advocacy groups that includes AADD has asked the General Assembly to support an appropriation of state funds in the fiscal year 2015 budget for supported employment services to help this year’s graduates find and keep good jobs.

The General Assembly approved $390,000 for the program, and the advocacy groups expect to continue pursuing increases for a total of $1.9 million that is needed to fund the programs for young adults leaving high school.

Until he graduated, Luciani believed job training was the next step for Tyler, now 22. That’s why a “transition” coach was assigned to him, but “reality sets in when there is no money to do job training or all the other things they’ve talked about with you for years.”

“You go from high school where everything is paid for to all of a sudden paying for whatever it is he wants to do,” she said. “He has so much pride in what he does so I wouldn’t think of not doing it. It’s not like an optional trip or something. This is like life or death, so you do it.”

Georgia, Keeley said, ranks 49th in the nation for funding for programs and services for people with developmental disabilities.

“We have 7,000 people on the waiting list for services, and families can expect to be there for up to nine years unless there is a crisis,” she said. “I’ve had more parents cry on my shoulders because it’s so frustrating and scary. They’re often forced to quit their jobs and stay home because they have no options and quite frankly sometimes it is cheaper.”

It’s cheaper because day programs and “supported employment” programs can cost up to $17,000 a year, Keeley said.

“Not many parents can afford that plus there aren’t enough quality agencies providing supported employment because there is no system in place in Georgia to provide it for these young adults,” she said.

The issue has been on AADD’s radar for at least the past five years with increasing emphasis, and the organization plans to keep putting pressure on Georgia legislators to increase funding for programs for developmentally disabled adults.

“We’re going to go back every year and ask for increases and to make the point that we have to do something for these kids,” she said. “Parents are stunned when their children come home to the bedroom with nothing. They just didn’t think it would work that way.”

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