Social Policy in Ontario

Why is Ontario refusing to help autistic children?

Posted on April 14, 2016 in Child & Family Policy Context

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NationalPost.com – Full Comment
April 13, 2016.   Tasha Kheiriddin

Imagine you are told your child has cancer. It is Stage III, which means that it is further along than stages I and II, but not as bad as Stage IV. But instead of offering him or her treatment, the doctor tells you: “Sorry. Treatment will be less effective at Stage III. There is a chance your child won’t benefit. So we won’t give you any. Go home now.”

How would you feel? Outraged? Helpless? How could the health system give up on your child, even if it is true that the outcome might be better if he or she had been diagnosed and started treatment sooner?

That is how the families of the 30,000 Ontario children living with autism feel, right now. The provincial government has just told them that if their kid is five-years old, or nearly five, they are now ineligible for Intensive Behaviour Intervention (IBI), the only treatment that is statistically effective at improving the development of autistic children. IBI involves upwards of 20 hours a week of individualized therapy to reinforce positive behaviours and enable children, many of whom cannot speak, to perform the most basic of tasks — like responding to their name, or putting on a shirt. It can be the difference between a life of dependence and a chance at independence.

But that chance is now off the table for autistic kids over the age of five. Why? Because an “expert panel” convened by Minister of Children and Youth Services Tracy MacCharles — which included no representation from groups such as the Ontario Association for Behaviour Analysis — reviewed the scientific literature and concluded that children over the age of five are less likely to benefit from IBI than kids aged two to four.

When it comes to autism, as with any condition, early intervention is optimal. But though starting IBI later may be less effective, it does not mean it is ineffective. Just ask Tia Riopelle of Uxbridge, Ont., whose daughter, Jolie-Anne, has been doing IBI for two years — since she turned five, the age at which the government now deems kids ineligible for IBI.

“It has meant everything. Before IBI, we had a non-verbal child who only had eye contact with her parents, who pinched upwards to 150 to 200 times a day, who would not play with other children. Within first six months of IBI, we began to see words and eye contact with other people. I now have a child who can name her friends, ask to see her friends, want to play with her friends and ask for things she wants in six-word phrases, where there was a time in our life we didn’t think that was even going to be possible,” said Riopelle. “For me, as a mother, it lifted the fog that was always hanging over us. IBI is not to make her neurotypical, but now she can tell me what her wants are, if she’s hurting, if she needs to go to a doctor. It has made me a better mother and a happy mother because I am not depressed and fearful for her future.”

And, according to Bruce MacIntosh, president of the Ontario Autism Coalition, the behaviour modification techniques used in IBI don’t just work for kids. “You can use them for anyone, at any age, including adults,” he said. IBI is an intensive, individualized form of ABA, or Applied Behaviour Analysis, and it is its intensity and specificity that gets results. But instead of IBI, five year olds will now only be eligible for a couple of hours of ABA a week. “At that level, it is totally ineffective,” says MacIntosh. “You might as well not offer it, as it is not worth the cost.”

MacIntosh, who has two children on the spectrum, has been fighting for the rights of autistic kids and their families for over a decade. One of his pet peeves is the government’s failure to track the way autism funding is spent, which is necessary to determine how to get the most value for it. There are currently two funding models: direct funding to families, which allows them the choice of providers, and government-contracted providers, who serve a designated region. MacIntosh’s research found that children of families who receive direct funding cost the health-care system a third of what kids who receive IBI through government providers do — a fact that he has brought to the attention of previous health ministers.

Why is it cheaper to directly fund families? Riopelle has a theory: “The services we get are tailored to Jolie-Anne’s needs. We don’t have to pay for a psychologist, for example. The providers work out of an old house, with low overhead.” In other words, parents pay for what their children need, not for what they don’t. This way, the health-care system can afford to treat more kids.

Costs, however, are still high. Jolie-Anne’s therapist charges $44 an hour. Multiply that by 20 hours a week, 50 weeks a year, and you get $44,000. And while the Riopelles have the funds to pay for private IBI — which they have done, rather than remain “#194 on the list” — the reality is that most parents don’t, a fact that Riopelle says “breaks my heart.”

In its latest budget, the Ontario government pledged $333 million in services for autistic children. It is trumpeting this as a positive change — which it will be, for younger children who will be diagnosed and treated earlier. But for children five years of age and over who are languishing on the government’s waitlist, or currently receiving IBI services, it is a death knell. Many of these families waited because they were told they would get services. Others have learned that the government will terminate their children’s treatment, regardless of whether they could still benefit from it, and offer a one-time payout of $8,000 to “seek services” on their own — a drop in the bucket compared to the actual cost of IBI.

This is not “clearing the waitlist,” which now stands at a shameful 16,000 kids. It is delisting, plain and simple. It is the same strategy the government has been using throughout the health-care system for a myriad of tests and treatments: mammograms now only start at age 50; Pap smears are only taken every three years. Chiropracty and physiotherapy were delisted over a decade ago — the same time the province imposed a health tax, ostensibly to improve the system.

If these children had Stage III cancer, would Premier Kathleen Wynne cut them off? It would be unthinkable. In the words of Tia Riopelle, “Does the government think parents would pay this money if the therapy wasn’t working?” Wynne should reverse this decision, track IBI funding and deploy it in a way that serves all the children who need it — regardless of age.

National Post

Rallies to support the provision of IBI for kids over five will be held across the province on Friday. For more information, go to < ontarioautismcoalition.com >.

Related
Tasha Kheiriddin: Applauding Premier Wynne’s initiative to teach children emotional intelligence  < http://news.nationalpost.com/2015/01/29/tasha-kheiriddin-applauding-premier-wynnes-initiative-to-teach-children-emotional-intelligence/ >
Over 16,000 children on Ontario wait lists for autism services: More kids are waiting than are getting support  < http://news.nationalpost.com/news/canada/over-16000-children-on-ontario-wait-lists-for-autism-services-some-families-are-waiting-years-for-help

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