On his mother’s Facebook page, Philip Knox appears broad shouldered and handsome behind aviator sunglasses, with a smile that might be inviting you in or keeping you at arm’s length—the shades make it hard to tell. Posing for his mother’s camera, he flashes the two first-place medals he had just won in track and field.
When Nakeishia Knox talks about her son, her pride shines through. He’s independent, she says. He can make himself something to eat when she and her husband, Stacey, are not at their Newark home. Philip transferred to a new school in spring 2013 and loves it so much that, by 7 am, he’s dressed and eager to get on the bus. Still, you can hear something else in her voice: She is scared to death.
That’s because Philip, 18, who won his gold medals at the 2013 Special Olympics, is autistic, and in three years he’ll no longer be eligible for special education services through New Jersey’s Department of Education.
“What happens,” Knox asks, “when, God forbid…” She stops, unable to complete the sentence. Finally, she says, “We won’t live forever.” Unfortunately, living forever seems to the couple to be the only way they can ensure a happy, productive life for their son. As an autistic young adult, Philip faces an uncertain future. After he ages out of the public education system in 2017, there’s no telling what will await him.
Over the last two decades, public awareness of autism has increased exponentially, as have services for autistic children. State and federal laws now give parents the right to have their children evaluated for special educational needs and to work with school administrators to see that those needs are met. Given that children with autism often proceed on a slower educational track than their typical-needs peers, those rights are sustained, in New Jersey at least, until the age of 21. But after that, says Knox, young adults on the autism spectrum “drop off the bridge.”
“You’d think that, after educating someone for 21 years, you’d want some kind of follow-up,” she says. “But I don’t think they really thought about that.”
She may be right. Because autism first manifests itself in early childhood, we tend to think of it as a childhood illness. And 25 years ago, most of us weren’t thinking about it at all. Not until the early 1990s, when the federal government made autism a distinct educational category and public schools began to offer special services for kids on the spectrum, did the disorder gain broad national attention.
In the intervening years, we’ve come closer to understanding its causes. We know, for instance, that genetics and parental age frequently play a role in the disorder, which is characterized by problems in communication and in interpreting social cues, and by repetitive behaviors. We’ve also devised some workable treatments, such as applied behavior analysis, which focuses on changing behavior, largely through positive rewards. Perhaps most significantly, we’ve learned that, to treat kids on the autism spectrum effectively, it is critical to intervene early—by the age of two or earlier.
Unfortunately, the perhaps justifiable focus on the needs of autistic children has created a chasm that now confronts the first widely diagnosed generation of autistic kids as they reach adulthood. We have few services to offer them.
That’s as true in New Jersey, which has the highest autism rate in the country (one in 45, as opposed to the national average of one in 68), as in the rest of the country. New Jersey’s system for helping children with autism and other disabilities is not easy to decipher. In fact, the Division of Developmental Disabilities (DDD) Office on Autism admitted as much in titling its 2011 guide for families, “Navigating Through the Maze.” But at least services for kids are out there in relative abundance.
Youth services include Perform Care, a private company contracted by the state to help families find health care for kids on the autism spectrum. The Office of Special Education Programs, a division of the Department of Education, mandates that each child on the spectrum receive oversight from a child study team of educators and other specialists. In fact, under federal law, all children with disabilities, including autism, are entitled to a free and appropriate public education.
But when individuals with autism turn 21, they and their families move from an entitlement system to one in which access to services is often based on their ability to pay or to secure their own funding. While most adults on the spectrum are eligible for funds through the DDD, there’s no guarantee that those funds will cover every service they or their families think is appropriate. To fill the gaps, families may have to turn to government programs such as Social Security Disability or to family savings.
The situation has forced some parents of children on the autism spectrum to stop working and stay home with adult children, or take part-time jobs so they can accompany their kids to and from work, training or day programs (transportation services are sometimes available, depending on the program). And because services for adults with autism are so spotty in New Jersey and elsewhere, some parents have had to send their children out of state to get them into residential programs.
Which isn’t to say the government has nothing to offer. The federal government mandates that all special education students receive what is called transitional planning beginning at age 16. In New Jersey and a few other states, that planning must begin at 14. It’s a collaborative process involving families, school and social service agency staff, employers and other community members. Their goal is to map out a workable plan for life after high school graduation. But the thoroughness and utility of the plans can vary dramatically among school districts. “I’ve seen some districts do a fabulous job of individualizing transition plans,” says Maria McGinley, a special education attorney who serves on the board of the New Jersey chapter of the advocacy organization Autism Speaks. “But,” she adds, “that doesn’t always happen.”
In addition, the DDD helps families pay for a variety of adult resources, including day services (which offer opportunities for activities, socializing and sometimes employment outside the home); residential services (such as group homes and supervised apartments); and employment-related services (including vocational counseling and placement).
But those programs are in short supply relative to the number of people who need them—a number expected to grow over the next decade as 500,000 children on the spectrum reach adulthood nationwide. Job opportunities are even harder to come by, to say nothing of housing.
Housing is an especially precious commodity. Community Access Unlimited (CAU), a Union County nonprofit serving people with autism and other developmental disabilities, can accommodate more than 250 people in its residential programs. But, says William Busch, CAU’s director of membership development, “an available space doesn’t stay vacant for very long.” In fact, says attorney Maria E. Fischer, who specializes in disability law, there are roughly 4,000 adults with developmental disabilities on the state’s waiting list for housing, and most of them will stay on that list for 10 to 12 years. Her 21-year-old daughter has been on the list since 2008, “and it will probably be another five or six years before she gets to the top,” Fischer says.
Peter Bell is president and CEO of Eden Autism Services, a Princeton-based nonprofit. He’s also the father of a 21-year-old with autism. Because of that waiting list, Bell figures any kind of residential placement is at least 10 years off for his son, Tyler—unless he or his wife becomes seriously ill or passes away. The situation is complicated by the fact that Tyler requires round-the-clock supervision.
High-functioning individuals—those with Asperger’s syndrome, for instance—may do fine with minimal supervision, while those on the other end of the spectrum may need skilled staff on premises 24-7. It’s not just a matter of finding a space, then, but of finding the right space. With the state trying to phase out large-scale residential facilities in favor of group housing in the community—a state task force has recommended closing two of seven large-scale centers for the developmentally disabled—the right space may not even exist.
Making sure their adult children have a clean, safe, comfortable place to live is a major priority for most families with kids on the spectrum, but how those children will spend their days is equally important. Nakeishia Knox says of her son Philip, “It’s heart wrenching to think that you, as a parent, get to go to work, and you leave your child home to watch television all day because there’s nothing else for him to do.” What she wants for Philip is pretty much what most parents envision for their kids. “I want something suitable that he can do that’s also a challenge, something that can take him to the next level,” she says. “Not just a job, but something that will stimulate that growth, that desire to want to do better, to do more.”
A study funded in part by Autism Speaks in 2014 found that autistic adults who have jobs that encourage greater independence showed significant improvement in autism behaviors and daily living skills.
Finding such jobs is not easy. A 2012 study in the journal Pediatrics found that, seven years after graduating from high school, one in three young adults on the spectrum had no college or vocational education or paid job experience.
Data for that study was gathered before the recent recession, which likely further decreased job opportunities for the disabled. The study also found that autistic young adults had fewer employment prospects than individuals with other disabilities, including those who were mentally disabled but not autistic (most likely because autism often goes hand in hand with other behavioral issues). While New Jersey can provide placement services for people with autism, it can’t do much for them if the jobs don’t exist.
Clair Rohrer, executive director of Bancroft, a Haddonfield nonprofit that has provided day and residential services for the developmentally disabled and brain injured since 1883, is all too familiar with the problem. Open slots for adults at Bancroft don’t remain open for long. “We have a lot more people in need of services than we can serve,” says Rohrer. “We’re constantly opening and growing and expanding, but not quickly enough.”
Developing new state-supported services depends on the state budget, which is highly stressed and can vary from year to year. “That’s a scary notion when you’re looking at so many people relying on those services,” says attorney Maria McGinley.
Still, the pressing need for services has sparked some innovative programs that could serve as models. Tucked amid the trees off Highway 35 in Middletown, the seven-year-old nonprofit Oasis TLC (for Therapeutic Learning Centers) indeed lives up to its first name. The gleaming white 18th-century farmhouse welcomes visitors with its pastoral sights and sounds. Behind chicken wire, hens scratch and cluck. A couple of baby goats amble to the edge of their pen to check out a visitor. A tall young man in rubber boots brings plastic bottles filled with fresh water into the pen. The animals gather around him. Before leaving the program in mid-September, Ian Mulligan, the tall man attracting the goats’ attention, was one of 14 autistic young adults—including day workers and residents—who work the farm and, in the process, learn marketable skills.
“Our mission is to teach vocations in agriculture and the environment,” says Mai Cleary, president of Oasis and the mother of a 26-year-old son with autism. “We also teach a healthy lifestyle and social skills.” That’s evident in the farmhouse kitchen, where a young woman—one of four live-in volunteers who provide supervision in exchange for accommodations at the farm—is cheerfully showing an Oasis resident how to prepare whole-grain waffles. In addition to helping with the day-to-day operation of the farm, residents and day workers prepare and host well-attended breakfasts and teas for the public. At these events they learn additional skills like setting up and serving. Most of the outbuildings were built by the young adults at Oasis, adding construction and carpentry to their skills.
Like many organizations that serve autistic adults, Oasis is in a constant fiscal crunch. To buy the land for the farm, Oasis partnered with Middletown Township, the Monmouth Conservation Foundation, New Jersey’s Green Acres Program and New York-New Jersey Baykeeper. The partners purchased 26 acres, 7 of which went to Oasis and the rest to Middletown for a public park. Among other creative ways of fundraising, Cleary hopes to rent the main house’s striking ballroom for fashion photo shoots.
Funding also preoccupies Wendie Blanchard, who in 2008 founded the nonprofit Arthur & Friends, named for a nephew with Down syndrome. The organization has built six hydroponic greenhouses, which are staffed, in part, by adults with disabilities, including autism. Grants from the Kessler Foundation, the Northwestern Community Action Partnership and other organizations, plus partnerships with for-profit companies like Greenway Flowers in Hackettstown and Garden State Urban Farms in South Orange, help support the greenhouses, which are starting to become self-sustaining. “We can provide what a lot of businesses can’t,” says Blanchard, “because we can do it year-round.”
Hydroponic farming seems to suit workers on the autism spectrum. Many are comforted by the clearly defined routine at the greenhouses and by the sound of running water that permeates them. Blanchard has created an environment in which the disabled work largely side by side with non-disabled workers. “If we’ve learned anything,” she says, “it’s that it’s much better to have an integrated community.”
Like Oasis, Arthur & Friends offers what Blanchard calls “progressive training”—skills that are transferable to the mainstream marketplace. She draws a sharp distinction between that and so-called sheltered workshops, where the disabled do simple jobs like assembling, packing and sewing for less than minimum wage and rarely get a chance to work alongside the non-disabled employees.
Right now, about 3,500 individuals are employed in New Jersey’s sheltered workshops (also called work centers), but that number is likely to drop over the next several years thanks to the Workforce Innovation and Opportunity Act, signed into law this past July. The new law is part of a national movement known as Employment First, which reflects the growing notion that the disabled should be offered every opportunity to join the workforce at large, to find meaningful employment and to be paid a livable wage. New Jersey’s Employment First Initiative, announced by Governor Chris Christie in 2012, states that “competitive employment in the [general workforce] is the first and preferred post-education outcome for people with any type of disability.”
The law, whose provisions take effect in 2016, offers hope for families with young adults on the autism spectrum, particularly because it mandates that vocational rehabilitation agencies use at least 15 percent of their federal funding to provide transition services for individuals with disabilities while they are still in school.
The Employment First movement, though well-intentioned, has added a new layer of anxiety for many parents, particularly those with adult children now employed in sheltered workshops. Harry Hyman, 29, is severely autistic and also suffers from a seizure disorder. Among other activities, one day a week he works at a program that offers the sheltered workshop model. His mother, Julie DiRico Hyman, worries that the new law could return him to a life of sitting at home with nothing to do.
“I don’t believe that Employment First has been conceived with the safeguards I think are necessary for people like my son,” she says, “and there are many, many like him.” Harry, she notes, isn’t violent, but he’s subject to fits of anger and frustration that manifest themselves in screaming and arm-flailing. And he has serious problems with language and judgment. “My son is very trusting, and he’s been taught to obey authority figures,” she says. “He wouldn’t recognize a person who meant to do him harm.” Neither is Hyman convinced that Harry would prefer to spend his days with what she calls “the general public.” “To him the world is very confusing, and language doesn’t always make sense,” she says.
Parents of relatively low-functioning young adults like Harry, as well as those with children elsewhere on the spectrum, are hoping for change in the form of the new Autism Collaboration, Accountability, Research, Education and Support (Autism CARES) Act, which was signed into federal law in August of this year. Sponsored in the Senate by New Jersey’s Robert Menendez, long an advocate for the autistic community, the act calls for, among other things, a study to be conducted under the auspices of the Department of Health and Human Services, the Centers for Disease Control, the National Institutes of Health and other institutions to determine what kind of employment, residential and other programs would most benefit adults with autism.
Menendez says a very comprehensive report is expected within four years. “[It] will lay the foundation for moving to grants for those who either have programs or who would be willing to develop programs under the guidelines established by the research,” he says.
If the law works as Menendez hopes, it should help restructure a system that, right now, is less than cohesive. Last year, Nakeishia Knox traveled to Capitol Hill with other parents of autistic children and representatives from the New Jersey chapter of Autism Speaks to lobby for a national policy that addresses the needs of young adults with autism. She says many parents had the same complaint: that the system is “piecemeal—there’s no coordination.”
In fact, New Jersey has begun transitioning from a system in which the DDD directs families to available services to one in which families must work with outside consultants, known as support coordinators, to find and secure those services. That change won’t necessarily be easy for families.
Before their son, Tyler, turned 21, Peter Bell and his wife were given a list of coordinators to choose from. “But we have absolutely no information to go by as to who’s good, what they offer and what a support coordinator really does,” says Bell. He’d like to think that, as insiders, he and his wife are up on these things, “but even we are intimidated by the process,” he says. With the system in flux, Bell can’t help but feel that Tyler is something of a guinea pig.
The new approach, as Bell notes, “puts more control and power in the hands of families.” But there’s a downside: “Unless you’re really good at figuring out what kind of services you want,” he says, “this is going to be daunting.” It’s just one more hurdle in an already complex and stressful situation. “We’re all probably a little bit anxious about what this means,” says Bell. “There are a lot of questions that remain.”
Leslie Garisto Pfaff writes frequently about health and education for New Jersey Monthly.