When Autistic Children Are Children No More

Three local families confront the looming social crisis.

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Josh Stern, 24, who is autistic, rides a Pace paratransit bus to his job at a North Shore bank.
Josh Stern, 24, who is autistic, rides a Pace paratransit bus to his job at a North Shore bank.
 

Though it is now more prevalent among American children than AIDS, cancer, and diabetes combined, autism is still largely a mystery. People with the condition (autism is five times more common in boys than girls) typically struggle with social interaction, communication, and speech; they often suffer from other cognitive, psychiatric, and neurological difficulties too. Many are prone to repetitive behaviors, obsessive-compulsive tendencies, withdrawal, or tantrums. Although there is no known cure, a regimen of interventional therapies has been shown to help, especially if started early.

And so begins an emotionally grueling and costly cycle that parents of Our Place participants know all too well: years of intensive speech, occupational, and play therapy that augment the child’s regular school day. “I was driving all over Chicago to take Josh to his appointments,” recalls Wilmette resident Linda Stern, referring to her autistic son, now 24.

Sometimes that investment yields significant results. Like Frank Craven, Josh Stern attended New Trier, where he excelled at math, and went on to the area’s life-skills program. A counselor helped him land a part-time job in a suburban bank before he turned 22. There he uses his photographic memory to help match vehicle identification numbers with car loan paperwork. In three years on the job, he has not once called in sick. Stern earns $8.25 an hour, more than many autistic workers (a loophole in the federal Fair Labor Standards Act allows employers to pay the disabled below minmum wage). “We’re very fortunate,” says his mother. “The people at the bank have really taken ownership of him. And he feels important.”

Josh Stern at his bank job
Josh Stern at his bank job

Gallery knew that her son would probably never be high-functioning enough to hold a job like Stern’s. But she believed that it was crucial for him and other developmentally disabled people to keep building practical life skills, learn to curtail counterproductive behavior, serve the community in a visible way, and—most of all—make friends with other people around their age. “I wanted to create a place with meaning and purpose,” Gallery says. “A place that accommodates different levels of skills. A place that makes work feel rewarding. A place where Frank could build relationships.”

Did other parents feel the same way? Gallery decided to gauge interest by passing a sign-up sheet around the bleachers at a Special Olympics basketball tournament. “I got 30 signatures in one day,” she says.

An information session in 2008 in a Wilmette Park District rec room spawned a series of Saturday night potluck socials for potential participants. A nucleus of 20 families emerged, each of whom gave Gallery $100—enough for her to file for nonprofit status and get insurance.

Early on, one of the most vexing questions Gallery faced was whether to seek public funding for Our Place. That would mean wading into a maze of differing local, state, and federal rules and regulations. “The more you look into these sorts of things, the more you realize there are roadblocks everywhere,” she says.

Figuring that meeting state licensing requirements could hold up Our Place for more than a year, Gallery decided not to apply for state or federal support. Instead, she petitioned New Trier
Township administrators for a community grant. They awarded her $20,000 (and have granted her as much as $65,000 each year since)—enough to hire an energetic program director, 29-year-old Stacia Swan, who has a background in special education and case management. Gallery signed a lease for space at a Wilmette church.

She was committed to keeping the cost of attending Our Place reasonable. Rather than the $85 or so a day that she says most programs in the area charged, Gallery set day fees at $55, or $8.50 an hour. (Participants may attend in anything from three-hour increments to full nine-hour days.)

In October 2009, when Our Place opened, 26 developmentally disabled teens and adults had signed up. By 2011, there were 40. Gallery then hired an executive director—William Johnson, 51, an affable ex–Aon executive—to manage daily operations and fundraising. (Fees cover 40 percent of the budget; the rest comes from grants and donations.)

Swan anchors each day around volunteer tasks in the morning and other group activities in the afternoon. The Our Place volunteers work at the New Trier Township Food Pantry, the Mitchell
Museum of the American Indian in Evanston, or the Winnetka Thrift Shop. “Many of the tasks involve organization, which our guys are good at,” says
Johnson. “It’s an opportunity for them to be useful and do something they enjoy.”

Swan views lunchtime as a prime opportunity to reinforce life skills. So Our Place participants help shop for groceries, make the meals, and clean up. Lunch is also an excellent time for conversation practice. On a recent day, the young people gathered around the dining table at the light-filled program headquarters are good-naturedly ribbing Jason Kaplan about his weekend plans.

“What about your girlfriend? Are you bringing her to the social this weekend?” one man asks.

“She’s my friend, not my girlfriend,” Kaplan answers, his eyes closed. “She’s still giving it some time.”

“We’d like to meet her,” another insists.

Kaplan sighs. His eyes open. “We’re still getting to know each other.”

Not every exchange is so calm. One usually charming 25-year-old occasionally has a frustrated outburst. The staff has given him a color-coded key chain: green signals happy, red angry, and yellow in between. He flashes yellow to show when he’s feeling agitated and needs to take a break. “I am also working on saying ‘excuse me’ before interrupting,” he says, after jubilantly, well, interrupting.

Recently, Gallery has begun hoping that a few members of Our Place could take another step toward self-sufficiency and become roommates. After all, research shows that both autistic adults and their families are happier when the former live in the community, either with a friend, with a spouse, or in a group home with fewer than six people. “When you’re interacting with your neighbors,” explains Mary Kay Rizzolo, the associate director of the Department of Disability and Human Development at the University of Illinois at Chicago, “you make friends. You have more employment opportunities. You learn self-advocacy.”

But Gallery knows that the goal of moving an autistic adult child to a small group home can be an elusive one. That’s partly because the state of Illinois hasn’t provided much funding for such homes. The vast majority of the roughly 150,000 Illinoisans with developmental disabilities live with relatives. In 2009, only 38 percent of the remainder lived in a small group setting—the lowest percentage in the nation except for Mississippi.

The rest lived in nursing homes or in Illinois’s big institutions for the mentally disabled, seven of which are state run. Even as institutionalization gradually fell out of favor nationally, the Illinois government, until recently, kept giving more money to institutions than to community-based group homes or to families who wanted to keep their loved ones living with them. That’s puzzling, given that the latter two options are far less expensive: Illinois spends $57,000 to $182,000 a year in state and matching federal dollars to institutionalize a developmentally disabled person vs. an average of $45,000 to pay for a small group arrangement or $19,000 to cover assistance at home.

But the terrain is shifting. In 2011, Illinois settled a class-action lawsuit brought by the Chicago-based advocacy group Equip for Equality. As a result of the consent decree, the state has begun funneling more resources to disabled individuals or their guardians—to the tune of $33.5 million in 2013. (Illinois has also closed the Jacksonville Developmental Center and started the process of closing other larger state-owned institutions.) They, in turn, are supposed to have the option of using that money to pay for things like day programs or vocational training—or for spots in group homes, if they can find them. Says Tony Paulauski, executive director of the Arc of Illinois, a grassroots advocacy organization: “Now the issue is: Are there enough places for people to go?”

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Photography: Chris Lake

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