Mica doesn’t talk a lot. When he says, “Go to bathroom!” it means he really needs to go.
That Mica can say even those three words is a relief for his mother, Anne Jovanovic, since the seven-year-old is functionally non-verbal. When Mica was a toddler, doctors said he had hearing problems and performed two ear surgeries on him. Things didn’t improve. Eventually, Jovanovic took him to a clinical psychologist for a private examination in Ottawa, where she lives. He was diagnosed with severe autism at three years old.
“We drove back home freaking out,” she recalls. “The doctor said you need to start intervention treatment right away, and by the way, the wait list is actually close to 18 months.”
Jovanovic’s situation is not unique in Ontario, where autism therapy is not covered by the Ontario Health Insurance Plan. Instead, the Ministry of Child and Youth Services has covered these services since 2000 for children up to age 18 diagnosed with autism spectrum disorder (ASD), which includes a range of neurological disorders that affect communication and social interaction. In the 15 years since, issues such as misdiagnoses and underfunding have created wait lists that are thousands of families long.
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The Ministry’s Autism Intervention Program (AIP) covers two types of treatments with the greatest success rates: intensive behaviour intervention (IBI), and applied behaviour analysis (ABA)-based services. One report estimates 2,192 children are in line for IBI in Ontario, and 13,966 for ABA. Another Canadian study found that around 1 in 100 children are diagnosed with ASD, but numbers are far from reliable.
A crash course in program lingo: IBI is an intensive, comprehensive strategy designed for young children with autism spectrum disorder and should begin early in life, ideally before age four. ABA is a more general treatment strategy for a wide range of behaviours, which explains why its wait list for ABA is so much longer.
As Mica was fast approaching age four, the Jovanovics started his IBI treatment six weeks after his diagnosis with a private provider. Anne Jovanovic still can’t believe they were able to afford it.
“My husband’s father came out of retirement to help pay for it,” she says, “and my parents gave us their retirement fund.” That first year, the family spent $57,000 on IBI.
The situation is much worse for Ontario families who can’t afford private services. They go through the regular hoops: joining one wait list to see an approved physician or psychologist for an autism spectrum disorder diagnosis, then joining another to see if they’re eligible for treatment. One factor behind the long wait times is the number of children receiving treatment who aren’t, in fact, autistic.
“Most family physicians have had no training in diagnosing autism, and yet a lot of them are giving that diagnoses because they know there’s treatment,” says Tracie Lindblad, clinical director at Monarch House, a treatment centre with locations across the country. “It’s not harmful for children although it adds to the numbers and it’s a misdiagnosis.”
Lindblad explains that doctors believe ABA could help people with other disabilities learn new skills, but more funding is available for autism therapy than other conditions, such as Down syndrome, so they do whatever it takes to ensure treatment.
Slowing things down further, says Katharine Buchan, an autism advocate, is the lack of an inter-ministerial strategy for treatment and a shortage of service centres; only nine in Ontario offer ABA. Currently the Ministry of Children and Youth Services handles all administrative duties.
“If you take one in 68 people from the whole province, that’s the number of individuals with an autism diagnosis,” says Lindblad. “We need to be thinking about the Ministry of Health. How do we train our pediatricians to recognize the signs of autism?”
In 2013, the auditor general’s office issued a report on autism services in Ontario that outlined the system’s long wait times and shortage of services. Minister of Children and Youth Services Tracy MacCharles acknowledges there is still more work to do.
“We recognize that some families wait a long time to receive autism services and we are continuing to make progress for these children and their families,” she explains.
MacCharles says the Ministry is re-investing $4.5 million in ABA-based services to provide more services for children and youth with autism, and that a recent re-investment of $5 million to the AIP was also made. “These, along with previous investments, have created additional spaces in both IBI and ABA so more children and youth can get therapy they need,” she says.
In the meantime, a number of families have simply moved out of Ontario in search of support.
Tim Ingram moved from London, Ont., to Calgary because his daughter Alanna, then five, was being discharged from IBI treatment — a clinical decision a service agency can make if it deems a child is receiving little to no benefit from the therapy. Ingram’s son, Tyler, was three at the time and had also just been diagnosed.
“When you’re discharged, you’re discharged into nothing because the school system doesn’t know what it’s doing,” Ingram says (according to the auditor general’s 2013 report, disagreements with discharge decisions are a “main complaint” of families). “We were looking at no services at all and my son was getting no help.”
In Calgary, where they have lived since January 2014, Ingram’s family receives government support for both Alanna and Tyler in the form of assistance paid directly to him, about $60,000 per child, per year. “What’s good about the Alberta model is that it’s designed around families, whereas the Ontario system is very clinical. They tell you doctors know best,” he says.
Moving between provinces to find better coverage poses its own problems, advises Autism Ontario education writer and coordinator Katharine Buchan. “We actually have no idea how many people with autism are in Canada right now,” she says. “We are left to cobble information together and that’s why you see families shifting between provinces.”
Having distinct provincial and national plans would help in research and funding and would reduce the number of mental health professionals who have no idea they’re working with someone on the autism spectrum, she says.
This practice, often called “medical migration,” reminds Jovanovic of a popular joke in the Ottawa community.
“If you have one kid (with autism) you try and hang on, if you have two you leave immediately,” she says. “A number of parents we know have left the province.”
In the last five years of pursuing private options, Jovanovic’s family has spent almost $220,000 on Mica’s treatment. And it’s far from over.
“Mica still does IBI with a private therapist every morning from 7:30 to 10:30,” she says. “Every month we pay almost $3,500 for it. It’s my husband’s entire net pay.”
Ontario’s guidelines typically involve between 20 and 40 hours of direct service per week. But Jovanovic says that if a child’s autism is severe, they need many more hours than what is being provided. The auditor general’s report in 2013 reviewed actual IBI service hours under the direct service option and found that children who were discharged in 2012 received a median of 20 hours of therapy per week over their entire course of treatment, even though they had been approved for 27 or 30 hours.
“I have two options,” says Anne Jovanovic. “I can pay or I can not do this and watch my kid go the way of a number of other kids that we know who also have severe diagnoses and their parents just stopped because they just couldn’t do it anymore. We know what happens. If our kids don’t get sufficient support, we’re going to end up having to institutionalizing them.”
Ingram agrees that stopping treatment and going back on a wait list for years is not a realistic option, and stresses how much his family’s move to Alberta has helped both his children with ASD even though they had no support system outside of this province.
“All my family is from Ontario,” he adds. “We left everything behind.”