Who Will Care For Dana?
April 5, 2011
http://www.parade.com/health/autism/featured/autisms-lost-generation.html
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In many ways, Dana Eisman, 20, of Potomac, Md., is like any other young adult. She rocks out to Train, adores Glee, and eats pizza every week. And this June, like many of her peers, she'll leave school and join the real world.
But for Dana-and her parents, Beth, who works in a doctor's office, and Rob, a business owner-that prospect is terrifying. "I want to celebrate," Beth says, "but what I feel is a knife in my heart."
That's because Dana is autistic. She can't hold a conversation, make eye contact, verbalize her thoughts, cross the street alone, or control herself when she's upset. Starting when she was 4-thanks to a federal law that guarantees disabled children an appropriate education-she has spent her weekdays at Ivymount, a private school for special-needs students that she loves and that has been paid for by the state and county. But because Dana turns 21 this week, that support will dry up when the school year ends, leaving her parents to agonize about the quality of life their daughter is facing.
In the next 15 years, an estimated 500,000 autistic children like Dana will graduate out of school systems in the U.S. and into the unknown. Meaningful programs for them are scarce, and funding even scarcer. "We're at the moment of truth to address the numbers of children aging into adulthood," says autism activist Linda Walder Fiddle. "Their lives are hanging over a cliff, and we must not let them fall."
It's like a splash of cold water in your face," says Robin Heyd of New Jersey, whose son Eric is 20. "You're devastated twice: first, with the diagnosis; then, years later, when you realize that after all the interventions, you still have a kid with autism and you have to plan his future."
That planning process-which begins during a child's teenage years-is called "transition," but many parents can't tell what exactly they're transitioning to. Only about 3,500 programs are available nationwide for autistic adults, compared with 14,400 for autistic kids. Some are little more than day care, while -vocational programs may consist of participants working for a company in isolation, doing piecework like shredding paper. "It's not what we want for our kids," says Jeff Sell, a vice president of the Autism Society and the father of autistic twins. "The situation in many places is sad, disheartening, and disgusting."
Of course, decent programs for autistic adults do exist, but they usually have long waiting lists, says Larry Lam, a New Jersey father whose autistic son, Jonathan, is 21. "Parents throw up their hands, and their kid sits at home watching TV."
The Eismans considered 10 vocational-training programs for Dana. Their top choice, Community Services for Autistic Adults and Children (CSAAC), is the only one they knew of in their area designed for individuals with autism; the rest serve a range of developmentally disabled adults. But autism is different from many disorders with which it is frequently lumped together: Though 44% of autistic people have mild to moderate mental retardation, some have none at all, according to National Core Indicators, which collects data on the disabled. Often, autistic adults' capabilities are masked by a lack of social skills or an inability to articulate ideas.
That was the case with Dana-until a few years ago, when she went to a program in Austin, Tex., and learned to communicate by typing and pointing to letters on a board. One of the first things she typed was: "I don't want to leave Austin because no one is going to think I'm smart." And: "I'm so uncomfortable inside my body. I don't know how to stop myself."
The Eismans were proud-and stunned. Says Rob: "For 15 years, we thought Dana had the mind of a 4-year-old. What kind of parents are we that we didn't realize this wasn't true?"
Where are the jobs?
Every week, Dana puts on a blue employee T-shirt to work at a pet store. Shadowed by a job coach, she unwraps boxes, shelves products, and cleans cages meticulously and methodically. When a customer asks for assistance, the coach prompts Dana to reply, "Let me take you to someone who can help."
Dana is not paid for her work, which is part of Ivymount's vocational-training program. Indeed, an autistic adult's prospects of landing a paying job are bleak: Only 20% are employed, one study estimates, and at least 60% of those with jobs are thought to be underemployed or paid below-market wages.
Learn more about the HALO program, where Dana learned to communicate
In the workplace, many autistic adults need support, like job coaches and aides, which autistic children are legally entitled to. "The burden of responsibility shifts after they age out of the system; once they're adults, they must ask their employers or vocational programs for such services," says Ari Ne'eman, a presidential appointee to the National Council on Disability. Ne'eman himself has Asperger's, a form of autism. "Many of them have not been taught the skills to do that."
A $3.2 million lifetime cost
As Beth drives Dana to a weekly music-therapy session on a brisk spring afternoon, she is distracted. She's just heard that an acquaintance's child has received funding for a program. Why hasn't Dana gotten word yet?
The Eismans have learned that finding the right program-which takes hours of research, visits, phone calls, and interviews-is just the first step. Getting into that program and getting funding to cover it are essential for all but the wealthiest families. Services at CSAAC, the Eismans' pick, can cost up to $38,000 a year, and many participants will go there for decades. The steep, recurring price of many programs and therapies is why raising an autistic child, according to a Harvard University study, can add up to $3.2 million over his or her lifetime, compared with the $222,360 it typically takes to raise a child to age 18.
Fortunately, Beth and Rob have been told they have a good chance of receiving state funds-the severity of a disability is a major factor, and Dana is considered more impaired than most.
Who will take care of these kids?
Though legislation to benefit families with adult autistic children is inching its way through Congress, parents are taking matters into their own hands. For some families in New Jersey, which has one of the nation's highest autism rates, that may mean moving to a state where there's good coverage and less competition for services. Other parents are calling local businesses to craft makeshift job programs-or even pooling their resources to buy property and hire support staff to create assisted-living situations for groups of autistic adults.
Larry Lam formed the Post-21 Club of Bergen County, N.J., to help families like his find appropriate programs and workshops for their adult children and to raise funds for those facing shortfalls. Outside Austin, Dan E. Burns is soliciting charitable donations for the Autism Trust USA, a nonprofit he cofounded to build a campus for autistic adults, with vocational programs and small businesses run by residents. In Phoenix, Denise Resnik, the mother of 19-year-old Matthew, cofounded the Southwest Autism Research & Resource Center (SARRC). Two years ago, it started a Vocational & Life Skills Academy to train adults in fields like gardening and cooking, with the goal of helping them start their own businesses. SARRC is now planning a residence, too. "It's important that someone take care of our adult children when we're no longer able," Resnik says.
The Eismans' older daughter, Melanie, who is 22 and in graduate school, has said that she'll always be there for her sister, but Rob and Beth do not want to force that responsibility on her. Since Dana was 6, she's been on the waiting list of the Jewish Foundation for Group Homes, a nonsectarian agency that offers staff-supported housing for small groups of disabled adults. However, it can cost more than $70,000 a year, and the limited state funding goes to those with the most urgent needs, like a 50-year-old autistic man whose 75-year-old mother is critically ill.
This year, Dana had dinner at a Jewish Foundation home while her parents hung out in the living room. Beth describes it as "cozy and welcoming." When asked her opinion, Dana typed out that she liked the girls she'd met but felt scared, too. "If I go away to a program," she typed on another occasion, "can I come back if I don't like it?"
A growing population of autistic adults
These issues are not going away, because the number of autistic adults will only continue to increase: Today, one in 110 children (and one in 70 boys) born in the U.S. is diagnosed with autism, and the numbers have been rising 10% to 17% a year. Advocates say that the needs of this population must be addressed by the private and public sectors, such as by building appropriate housing, creating tax-free savings accounts for parents to use for their adult children's care, or providing government incentives to companies that hire autistic employees. "They're hard workers, have excellent attitudes, and don't mind repetitive work," says former NBC president and CEO Bob Wright, who founded the nonprofit Autism Speaks after his grandson's diagnosis. "If I were a business owner, I'd say, 'Bring them on.'"
In Potomac, Dana and Beth sit together every night at the antique white desk in Dana's bedroom. Typing sentences to each other on the computer, they discuss everything: their horoscopes, school, something they saw in the news. As the Eismans anxiously wait for their version of the golden ticket-the funding letter from the state disabilities agency-Beth asks Dana: What do you want to do next year? What is your dream? "A good job," Dana carefully types, calling out each letter as she presses the key. "I want to be safe and happy."
