When Susan Senator’s son Max was racing toward the high school finish line, he joined the rest of his classmates for the usual rites of passage. He took the ACT and applied to good schools, landing at New York University’s prestigious Tisch School of the Arts.
But things couldn’t have been more different for Max’s brother, Nat. Senator, a blogger, memoir writer and novelist, had to take into account the fact that her profoundly autistic older son, while very competent when it comes to self-help skills like showering and dressing, is also limited verbally, cannot handle money and still doesn’t look both ways when crossing the street.
In other words, she knew he needed a 24-hour caregiver to be safe. But because the infrastructure and services aren’t in place to create the type of living arrangement she wanted for Nat after he came of age, she joined the growing ranks of parents who are struggling to make short- and long-term provisions, often taking matters into their own hands.
Parents whose children were among the first wave diagnosed with autism—as well as those with younger children who see the future fast approaching—are confronting new challenges for their kids’ adulthood. They’re facing the harsh reality that when these children—200,000 of them over the next five years, according to one estimate—reach 21 or 22, depending on the state, all the educational supports and services they have been receiving under the federal Individuals With Disabilities Education Act (IDEA) will vanish.
Aging out of services
This forced transition, called “aging out,” pushes them into the woefully lacking system for disabled adults. And it’s not just those with more severely disabled children who are worried. Parents whose children are termed “high-functioning,” including those with an Asperger’s diagnosis, have reason to be concerned that their kids—who may be dealing with things like ADHD, anxiety and sensory issues in addition to their social and communication delays—are not going to magically stop needing support after they reach a certain chronological age.
Liane Kupferberg Carter’s autistic son Mickey turns 20 in July and, Carter, who has written much about the challenges of raising a child on the spectrum, admits to floundering.”I don’t know how to do this,” she says. “When our son Jonathan was preparing to leave home for college, we had a whole shelf of books to guide our family.” But there’s no such book guiding Carter as she faces the next step with her verbal but cognitively challenged son, diagnosed with PDD-NOS. “We’re making it up as we go,” she says. Carter is certain of only one thing for Mickey, who likes to camp it up in a pair of Groucho Marx glasses: Due to his cognitive challenges and autism-related epilepsy, which is only partially controlled by medication, he will always need a supervised living situation.
Kristina Chew, whose 14-year-old son, Charlie, is on the more severe end of the spectrum, proposes that school should continue for the developmentally disabled until they are 25, which would take into account their delays and help families “staring at an abyss” when a child turns 21. “We have learned so much more about autism and the different developments, abilities and needs of autistic individuals in this past decade,” she writes. “Let us try to use this knowledge to provide the best outcomes and the best lives for individuals with developmental disabilities at every age.”
Planning starts at 14
Senator says parents often begin panicking when their kids hit 14 and transition planning starts coming up. IDEA requires every state to begin this process for all students with an Individualized Education Program (IEP) by age 16, and some states require that school districts start the process as early as 14. During the annual IEP meeting, the focus shifts to more specific planning and goal-setting for the transition into young adulthood. Goals might include things like post-secondary education, vocational training, and independent living. Autism Speaks also provides a Transition Tool Kit, which offers guidance on everything from housing to Internet safety.
When it came to Nat, Senator created a shared living arrangement. It’s like a group home, except that there’s a live-in caregiver, which Nat qualifies for due to his level of disability, as opposed to rotating staff. “The idea is that it’s just like home,” Senator says. “He’s got to do the groceries, clean and do the laundry,” assisted by another part-time caregiver. Nat shares a house not far from his family with another young man with similar issues; that man’s family owns the house and Nat rents from them.
The families secured donated furniture; the rest was paid for out of the two young men’s budgets. Friends have been able to watch Nat’s story unfold—complete with pictures—on Senator’s Facebook page, including their shopping trip to Pier 1 for a pillow, a lamp and a rug. “Nat chose aquas, very wild stuff!” Senator says. “I had no idea!” Other parents have followed the project closely, seeing it as a possible template.
Working with a job coach
Nat works three days a week, sharing a job coach with two other young men. This coach, paid for by a state allocation, looks out for Nat at his job at CVS stocking coolers, making sure he understands what he is expected to do and stays on task. He’s also about to start a trial run at a second job retrieving shopping carts at a grocery store. Currently Nat spends the other two days in DayHab, short for Day Habilitation Services, meant to help people with developmental disabilities improve or maintain their independent living skills.
“DayHab is often babysitting,” Senator says, “table top activities, coloring, television or sheltered workshops, with very little out in the community, and there’s a mixture of disabilities.” This isn’t true of Nat’s program, she says; all of his “colleagues,” as Senator terms them, are developmentally or intellectually delayed, possibly due to autism or Down syndrome.
Half of Nat’s funding comes from the state, half from Medicaid. After he’s given a budget for rent, living expenses, transportation and his job coach, the family works with Nat’s service provider to “come up with ways to stretch the money,” Senator says. The family pays for extras like a recent three-day outing with a social group to New Hampshire.
Group homes create families
Barbara Fischkin also helped create a home for her son Dan. She first shared the story of his “miracle” group home—funded by the U.S. Department of Housing and Urban Development and run by the Nassau County Chapter of AHRC, a nonprofit group—two years ago. Then, she described it as a “newly renovated house on Long Island—a place I call the frat house. Actually, it is a beautiful and smartly designed home that could be a model for such endeavors nationwide. And the guys, who are in their 20s and 30s, are all at the age when leaving home and family and striking out on your own—even if you need lots of staff to help—is something one yearns to do.”
Two years later, she reports that Dan, now 24, and his three housemates “become more like a family all the time. The guys look out for one another.” Dan is still not verbal and has an aide most of the time “but is making great progress with independent typing.”
Laura Shumaker is another parent who has successfully transitioned her autistic son, Matthew, whose childhood and adolescence she recounts in her memoir A Regular Guy: Growing Up With Autism. Matthew, now 25, lives in the Camphill Community in Santa Cruz, a supported living program Shumaker describes as “flexible and dynamic.”
Matthew has been in a day program with social skills help, volunteer work and vocational training outside of Camphill, but is soon transitioning to two days’ a week job training for garden/landscape work and three days’ a week work with a job coach. “We are also building social activities into his program,” Shumaker says. The program is funded through the nonprofit Regional Center of California, but given the state’s budgetary problems, the family needs to make a sizable donation each year.
Options include day programs
Meanwhile, some parents of young children are already researching options. Chew has put Charlie on a waiting list for state housing but is thinking the ideal immediate plan will involve a part-time job with a good day program.
She writes that her new “‘hobby’/obsession” is finding something comparable to the county school for autistic children, which he loves and where he learns daily living and vocational skills. But this appears to be difficult if not impossible, she says. “I know the day that yellow bus does not pull up in front of our house will be a tough one.”
Chew is well aware that funding shortages make her idea of extending special-needs services to 25 a pipe dream. But she also knows that the dearth of options leads many parents to keep these young people at home, often idle and lacking the structure, routine and calm those with ASD need to do their best.
Because Charlie had a lot of ABA (applied behavior analysis), Chew says, he has more skills than he might otherwise. She envisions her athletic son, aided by a job coach, folding towels, sorting recycling items, or working in a park, sweeping leaves. But she feels he might also have “major behaviors. As a 6-foot-tall adult who can’t really read, I don’t think he’d be happy in a room with a TV set doing arts and crafts.” She worries he might end up in a setting like the “awful” after-school program she tried once: “It was a cinderblock building with old furniture. Half were kids, the other half really disabled adults who were there all day in a sheltered workshop.”
She’d be all right with Charlie living at home until he finds housing he likes, ideally in a group home in a community with 24-hour staff and two or three other disabled adults. But she also really likes a couple of other models she’s seen. One Texas couple plans to move out of their house and turn it into a group home for their child and other adults with disabilities. And in California, a group of families created a center in what she describes as a mini-condo complex. Two disabled adults live with one or two staff members; it’s not quite in a neighborhood but they have their own apartment. “It’s going to be created as you go,” Chew says of Charlie’s future living arrangement. “I’m relying a lot on my family. We’re Chinese, and we have the ethic of taking care of the family.”
Margrét Dagmar Ericsdóttir is another mother who wants to be sure that services are there for Keli, her 14-year-old nonverbal autistic son, when she’s gone. Her high-profile Golden Hat Foundation, founded and directed by actress Kate Winslet, is the result of that simple wish. Of course Ericsdóttir’s plans for a campus that will embrace nonverbal autistic children is a long way off; it’s in the early planning stages and much fund-raising must be done.
But the sort of self-contained campuses proposed by the Golden Hat Foundation are themselves the subject of debate. Self-advocates like Ari Ne’eman, president and co-founder of the Autistic Self Advocacy Network (ASAN), feel strongly that smaller, inclusive settings are better for their adult autistic population. Ne’eman finds the prospect of a segregated campus very concerning. Commenting online about the Golden Hat plans, he cited “a wealth of research which shows that people have less safety, less choice and less opportunity to interact with the broader community in such settings.”
With the number of children believed to have an autism spectrum disorder continuing to rise, it’s clear that more living, working and support options are greatly needed for them once they lose their special schooling and services. What’s also clear: Both adult self-advocates and parents must be part of the process, providing input as to what those options should be.