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Debra Vines, founder of support group The Answer, Inc., with her son, Jason Harlan, at their Forest Park home
Jane Gallery was fortunate: on the North Shore she found a supportive community of parents of other developmentally disabled adults, all of whom were committed to getting their children out of the house and into the real world. But on the West Side of Chicago, in the predominantly African American community of Austin, Debra Vines and her family felt alone.
When Vines’s younger son Jason, now 25, was first diagnosed with autism, she says, she found that special education programs and interventional therapies were virtually nonexistent in the neighborhood. Vines began taking the youngster by train to therapy sessions on the North Shore and in Aurora. She recalls being amazed at seeing so many disabled people out and about. “I remember saying, ‘Jason cannot be the only black person with autism!’ ”
When Jason was eight, Vines and her husband, James Harlan, a security officer, moved the family to the near western suburb of Broadview so their son could enroll in a public school with a stronger special-needs program. (They have since moved to nearby Forest Park.) Vines says that other parents there began marveling at how much information she had gathered about raising an autistic child.
Soon her phone number was being passed around, and strangers with autistic kids of their own were calling to ask for advice on everything from applying for government support to dealing with autism-related financial and marital stress. “There were national agencies starting at the time, but there was a real grassroots need,” she recalls. “Parents felt like they were being bounced all over the place, and they just wanted to talk to somebody who knew the community, knew what was there, and could understand.”
By the time Jason was in his late teens, Vines and Harlan were gearing up to form a support group, which they would call The Answer, Inc. In its early meetings, Vines learned that the other parents tended to keep their children locked up at home. Many were afraid that if their sons displayed signs of unusual or unpredictable behavior—tantrums, odd vocalizations, rocking—in public, they might fall victim to bullies, criminals, or trigger-happy police officers. (Those fears escalated with the fatal 2011 shooting of Stephon Watts, a 15-year-old autistic boy who was gunned down in his Calumet City basement by police officers after he lunged at them armed only with a butter knife, his parents say. Police contend that the officers acted in self-defense.)
If parents had fewer fears about safety, Vines reasoned, they would feel more comfortable letting their children out of the house. That in turn would lower the rates of depression, self-injury, weight gain, and even diabetes that tick upward after school days come to an end. She has seen some of those problems in her own son, a quiet young man who is happiest tearing up pieces of paper; he gained weight after he aged out of his transition program at 22.
Vines knew that educating law enforcement personnel would be key. So she got certified as a first-responder trainer and began hosting classes for police officers in Maywood, North Riverside, and Forest Park during their shift roll call. “It’s basic,” she says. “We teach them signs and symptoms of children with autism and how to handle someone who has run away from home or is having a medication imbalance.” (The first thing she tells them: Stay calm.)
When parents told Vines that they wanted grocery stores to be more accommodating as they shopped with their families, she started a similar training series for small neighborhood markets on the West Side. She also teaches bullying prevention and disability awareness at two high schools and two park districts. “We need to get the community ready for our children,” she says.
Just as important, Vines knew, would be for the autistic young adults to have something positive to do once they ventured outside. So she began organizing occasional social outings, such as group dances with DJs, which have evolved into her latest project: a twice-a-week dance and exercise class for autistic adults. She found an open classroom in the Beverly Recreation Center in Broadview, hired an energetic dance teacher, and asked members of The Answer, Inc. to spread the word.
It’s 6 p.m. on a recent weeknight, inside a squatty concrete recreation center on an otherwise pitch-black stretch of the industrial corridor connecting I-55 and I-290, and the party is ramping up. Vines steers in her son, who is wearing a stylish black tracksuit. She beams with pride as the participants—who pay $150 for the 16-week session—come bouncing through the door. As Jason and seven others practice the night’s dance routine, Vines scurries around the room in her stretch pants, praising correct steps, helping diffuse potential meltdowns, and barking at her son when he slows down. (“You’re not tired,” she chirps, her hands on her hips. “You’re only 25!”)
Meanwhile, the dancers’ parents, who look relieved that they are off the hook for the next hour, gather to talk. A major topic of conversation: funding letters they’ve gotten from the state. One of the most crucial functions of The Answer, Inc.—which has worked with 550 families so far, mostly African-American—is to help members navigate the byzantine process of applying for financial assistance from the government.
To get a shot at public funds beyond Social Security disability payments (maximum: $700 a month), a disabled Illinoisan over the age of 14 must get on a waiting list known as PUNS (Prioritization of Urgency of Need for Services). The list, which now contains more than 20,000 names, determines who gets services such as residential placement, speech therapy, and continuing education classes—and what agency will pay for them.
The wait to be plucked off the PUNS list can be years, according to families I interviewed, unless the individual faces a crisis such as homelessness or a caregiver’s death. (The state declined to release statistics on the average wait time.) And up to this point, for many, that wait has been in vain. According to a 2013 State of the States report prepared by the University of Colorado, only 13 percent of U.S. families who choose to care for their adult disabled children at home receive more than sporadic public support beyond Social Security.
What about that 2011 consent decree that’s supposed to shift the way Illinois spends funds earmarked for this population, putting less money into institutions and more into the hands of disabled people or their guardians? In the past 12 months, the state notified 1,000 residents that funds are coming their way. Remarkably, most of the parents sitting in that rec center in Broadview were among them.
Unfortunately, those parents say that they are confused about why they got the notification letters and what the bureaucratese in them means. “We’re trying to work with families to make sure they get the services they need and to let them know they are entitled to their choice of providers,” says Kevin Casey, the director of the state’s developmental disabilities division.
Sometimes, Vines says, she thinks about Jason’s diagnosis and how she mourned that her younger son would not have a typical life, like his older brother. She admits that she still feels a twinge of sadness knowing that most of her friends’ children are getting married or graduating from college. “Jason isn’t going to go to college or give me grandchildren . . .”
She pauses. “But he’s happy. And he makes me happy.”
In this rec center in an unremarkable corner in the near western suburbs, moments of happiness do not go unnoticed, for they are transcendent. Every few minutes, a 23-year-old autistic man—who has an odd vocal tic that sounds like a cross between a bark and a growl—uses his hands to sign with his mother. When asked what he’s communicating to her, his mother smiles and translates. Class has barely begun, and he’s asking her to promise they’ll come back next week.
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Photograph: Chris Lake