Autism’s New Frontiers PART 2: ‘The bridge to nowhere’

The transition from youth to adulthood is the weakest link in the country’s already fractured approach to caring for children with autism
By Pauline Tam, Ottawa Citizen February 18, 2013

Two years ago, when Ashley Corbett of Arnprior turned 18, she entered Ontario’s Byzantine world of autism services for adults.

At best, the system treated her with benign neglect. At worst, she was invisible to it. Knowing that the wait was long for a coveted place at a provincially funded group home, Linda Murphy put her daughter’s name on the list when Corbett was just 13.

Six years later, she’s still waiting — one of 6,000 Ontarians with developmental disabilities who are on hold for residential care.

Corbett lives in a rural part of Eastern Ontario that offers her virtually no vocational training or job prospects. Though her mother is willing to re-arrange her work schedule and make the 45-minute drive to Ottawa so that her daughter can join suitable programs, nothing is available. The only option that a regional health agency has come up with is a day program for seniors with Alzheimer’s disease.

“Most people her age are either in university, or they’re working at a job where there are other young people. They’re not around frail elderly people in a nursing home,” says Murphy, who has struggled to find services that could help her daughter achieve a measure of independence.

Although Corbett completed Grade 12 under a modified curriculum, her mother has decided to keep her in high school until she ages out at 21.

Experts say Corbett’s predicament highlights the absence of any plan to help the estimated 4,900 Canadian teenagers with autism who come of age every year. The transition from youth to adulthood is the weakest link in the country’s already fractured approach to caring for children on the spectrum, critics charge.

And the situation only gets worse once they become adults.

“People are literally falling off the edge of a cliff trying to make it over to the adult side,” says Kevin Stoddart, a clinical psychologist at Toronto’s Redpath Centre, which provides counselling to adults with autism. “Even if they make it across, what do they have to transition to? It’s sort of a bridge to nowhere.”

The vast majority of people on the spectrum disappear from public view after they turn 18. They lose their pediatricians, publicly funded speech and language services and behavioural therapy. By age 21, they are no longer entitled to attend public school. A lucky few live in group homes or attend day programs. Almost none has even part-time jobs.

Some, struggling with depression and anxiety on top of their autism, cycle in and out of hospitals and psychiatric wards. Even those who attend university or college often end up unemployed, living in isolation with their stressed-out parents.

Many Ontario families have complained about a lack of planning, inadequate funding, lengthy delays and poor co-ordination of care for adults on the spectrum. The provincial Ministry of Community and Social Services funds 300 community-based agencies to provide services for adults with developmental disabilities. In total, it spends $1.7 billion annually to assist about 60,000 people, but experts say there simply isn’t enough money to keep pace with need.

“Even if you’re eligible, there aren’t enough funds in the system right now to support all the adults,” says Margaret Spoelstra, executive director of Autism Ontario, an advocacy group.

Some families have complained that their loved ones are at risk of ending up in a homeless shelter or jail because there is nowhere for them to go, especially when they get aggressive or violent, says Ontario’s Ombudsman André Marin.

His office, which has received a growing number of complaints in recent years, has launched a probe into why so many adults with developmental disabilities fail to get the services they need from the government.

“We have heard heart-wrenching stories from aging or ill parents whose adult sons and daughters are a danger to themselves and others and need constant care that can’t be provided at home — but they have nowhere to turn,” Marin said last November in launching his investigation.

“Some of these caregivers are on the brink of emotional and physical breakdown. We have investigated past cases where people with these severe disabilities have been sent to shelters and even jail.”

The gaps in service, which exist to varying degrees across the country, raise profound questions about what level of care and support Canadians are willing to give adults on the spectrum, whose abilities and needs are wide-ranging.

“Right now, this logic that it will fall on the families first and we’ll pick up the disaster later is causing all kinds of suffering that’s unnecessary,” says Herb Emery, a health economist at the University of Calgary who’s studying the issue.

A Harvard University study has estimated that over a lifetime, it costs $3.2 million more to care for a person with autism than for someone who’s typically developing.

For a high-needs person on the spectrum, annual caregiving needs can cost as much as $150,000 a year if they qualify for residential care. “It’s like being a senior from age two,” says Emery.

Because most autism services are not covered by Medicare or private health insurance plans, many families remortgage their homes or go into debt to pay for the high costs, according to a 2007 senate report on autism.

Emery says the country needs to rethink its system of income supports. In a 2012 study , his team proposes the radical idea of scrapping the existing age-65 eligibility for the federal Old Age Security benefit and turning it into an all-ages, income-tested benefit that would include Canadians with autism and other neuro-developmental disabilities.

“You could use the same total budget and cut it differently according to income needs across all ages,” says Emery. “You could do a lot of good with that kind of policy that would probably not cost a lot of extra. Just requires a different way of thinking about how you help people.”

Because of the lack of autism services for her daughter, Linda Murphy says she borrows regularly from her line of credit to pay the $1,300 monthly bill for Ashley Corbett’s after-school care. While federal disability tax credits and the provincial funding that Corbett receives, which tops out at $7,200 a year, offset the cost, it’s not nearly enough.

“The money is very tight,” she says.

Corbett falls on the severe end of the spectrum of social impairments that characterize autism. She has the IQ of a three-year-old and learns at a kindergarten level. Though she can follow a conversation and communicate with a little bit of sign language, her ability to speak consists mainly of a stream of “Na, Na, Na’s.” Mostly, she relies on a software program on a mobile device to be understood.

Despite her communications difficulties, Corbett also has unique gifts. She is obsessively tidy and a compulsive cleaner and organizer. On any given day, the Corbett-Murphy home is immaculately appointed.

Without opportunities for vocational training and on-the-job coaching, her daughter’s potential is wasted, says Murphy. “If there was a woman that was willing to work with her for housekeeping in a hotel, she’d probably be very good at it.”

In recent months, Corbett has fallen into a deep depression, for which her family doctor has prescribed an anti-depressant. Murphy believes her daughter feels profound loneliness and despair. “It’s a little bit more than being sad. She started crying all the time and wanted to sleep 18 hours a day. And she has really lost her appetite.”

Compared to adults who have other types of disabilities, those with autism have the worst prospects, according to a study by Paul Shattuck, a social-work professor at Washington University in St. Louis, Mo.

The study of nearly 1,000 young adults on the spectrum found that one in three had no connection with work or school two years after graduating high school — a rate significantly higher than youth with other learning and developmental disabilities.

“There’s a whole generation of people with autism who benefited from early intervention. They really have a lot of potential to contribute as adults,” says Dr. Lonnie Zwaigenbaum, director of the Autism Research Centre at Edmonton’s Glenrose Rehabilitation Hospital. “And yet, there isn’t an adult system prepared to receive them.”

Marc Nadeau has experienced the barriers. The 22-year-old Algonquin College student has Asperger syndrome, a milder form of autism that makes it difficult for him to read emotions, body language and other social cues.

Nadeau was diagnosed at age six, placed in a school for children with special needs and gradually integrated into a regular classroom. With the one-on-one support of a teacher’s aide, he graduated from high school under a modified curriculum.

Nadeau is among the first generation of young people on the spectrum who have benefited throughout childhood from more effective therapies and hard-won educational opportunities. Those gains are largely the work of resourceful parents, like Nadeau’s mother, who make it their full-time job to find their children the best possible help.

Now that he’s seeking a place in the adult world, she is struggling once again to find options for her son. “There are very few services out there that are geared to the school-to-work transition,” says Lisa Nadeau.

No matter where they turn — community college, employment counsellors, or community-run job-readiness programs — the family encounters well-intentioned people who want to help, but simply don’t have the expertise to address the specific needs of young adults on the spectrum.

What’s more, many programs that promise vocational training fall short of providing young adults with autism with the work experience they need to land their first paid job, says Lisa. “They are more adept at accommodating people with physical disabilities, or people in mid-career who have become disabled and need to retrain for another career. Many of them just started branching out into developmental disabilities.”

In the meantime, Nadeau is enrolled in the skilled trades program at Algonquin College, where he has developed a love of metalwork as well as automotive assembly and repair. To complete the program, he needs to finish courses in math, English and ethics, which are a challenge.

Though Nadeau has a superior memory for concrete details, he has difficulty grasping abstract ideas — a hallmark of someone with Asperger’s. For example, he finds it tough to understand a story illustrating an underlying theme or main point that’s not explicitly spelled out, because that involves abstraction.

“I’m not as good at the theory parts of school as the practical stuff. I’m more of a hands-on kind of person in terms of learning,” he says.

In conversation, Nadeau is thoughtful and articulate, capable of engaging in the back-and-forth exchanges of a conversation. But words come slowly, and it takes a while for him to formulate his thoughts.

Where his brain falls short in language processing, it compensates with remarkable agility in processing pictures and images. He has taught himself to dismantle and rebuild computers, which is a favourite past-time. And he’s a whiz at model-kit assembly. “I’m really quite good at putting stuff together and following directions,” he says.

Nadeau says his dream job is to build or maintain supercomputers, “like the one that runs the Large Hadron Collider,” the world’s largest high-energy particle accelerator in Switzerland.

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