A Puzzling Support System

On April 1st, 2019, Ontario’s Progressive Conservative (PC) government will put into action their overhaul of the Ontario Autism Program, which supports the families and caretakers of children with autism.

According to the Public Health Agency of Canada, one in 66 Canadian children is diagnosed with autism. Approximately 100 000 people in Ontario, 40 000 of them children, are on the autism spectrum.

Autism is characterized by difficulty with social interactions, struggles with communication, and restricted and repetitive behaviours. There is no one way to help those with autism, but research shows that applied behavioural analysis (a type of therapy) is one effective and widely-used treatment. It helps children with autism learn interaction skills and overcome the difficulties of their disorder. It is most effective at a young age—between two and five years old. It is important. It is a matter of vital healthcare. And it is expensive. Incredibly, incredibly expensive.

The previous Liberal government promised, in 2016, to invest over $500 million into their autism program, maintaining waitlists of those in need of funding and paying for children’s therapy in full with no age caps. 8 400 children with autism are currently in ABA therapy under this program.

Unfortunately, that program led to a 23 000 person long waitlist for therapy, meaning that many families were not receiving the necessary support for their children.

The PC government’s new changes aim to cut that waitlist. Funding will be based on the child’s age and the family’s net income, not severity of disorder. It will not go to therapy specifically but to any service of the family’s choice in the private sector. Children who enter the program under the age of six will be eligible for $20 000 a year until they turn six, after which it drops to $5 000 a year until they are eighteen. They have a maximum lifetime amount of $140 000. Children who enter the program above the age of six are eligible for $5 000 per year up to a maximum of $55 000 before eighteen.

These are all maximum figures. To qualify for these numbers, the family’s net income must be $55 000 or less.

Children with severe autism may require more than forty hours of ABA therapy a week, which can cost $50 000 to $80 000 annually. Add on speech therapy, tutoring, and school aids, and families who are only trying to support their child are looking at a bill upwards of $100 000 every year.

Based on just a cursory glance, those numbers do not seem to match up. How can a family receiving $20 000 annually pay for $100 000 treatment? Where do they expect the rest of the money to come from?

The government has also doubled funding to the five publicly funded diagnostic centres for autism across Ontario, hoping to clear the 2 400-person waitlist for their services. They have allocated extra funding for school boards that must support new students with autism, since some parents will no longer be able to afford as much therapy time for their children, who may have previously only attended regular school for a few hours a week but now must attend class full-time.

School districts will receive approximately $12 300 per student for new students with autism transitioning from therapy to full-time school, excluding children who already attend on a modified schedule of a few days a week transitioning to full-time. The education minister has also requested for school boards to dedicate a professional activity day to train teachers in supporting students with autism. However, teachers and principals have brought up concerns that these improvements will not be enough to support these new students, since teachers are already stretched thin in the education system and are not specialized in helping children with autism—one day won’t fix that. The president of the Ontario Public School Boards’ Association, Cathy Abraham, says that the support teachers can provide these students “is not going to be the same as what they have — it’s not the same as intensive, one-on-one behavioural training”. Staff will be overstrained and out of their depth, and students both with and without autism will suffer in their education.

Activists and parents have already begun protesting this change. A group gathered on the lawn at Queen’s Park on March 7, 2019, provoking memories of an incredibly similar protest in 2016, when many of the same protestors rallied against the Liberal government’s own changes.

Many parents are terrified that they will no longer be able to afford their children’s treatments, since families who previously received full financial support for therapy will no longer get that kind of subsidization.

According to an interview on CBC, Will and Nev Dundas have a young son on the autism spectrum, and he receives intensive behavioural therapy under the previous government’s program. After these changes take place, their son will have to move into a regular school in the TDSB, since they cannot afford to pay for treatment on their own. That school has already expressed to his parents that there will be little or no support immediately available for their child when he starts school.

Will and Nev are now trying to sell their home so they can afford their son’s therapy.

“We are selling our home to be able to support our son. What parent would want to make that decision? What options do we have?” Will asks in desperation.

If you look at world rankings, Canada is one of the wealthiest nations in the world. Ontario is home to its capital and its biggest city. Unlike our neighbour to the south, we do not usually bankrupt our citizens for medical treatment. And yet, though autism affects people’s lives just as much as a physical injury or disease does, we force parents to sell their homes to afford the care that is necessary for their children.

That does not sound like a wealthy country—nor a responsible province—to me.

Evidenced by frequent protests, it appears that no government is able to properly provide assistance for the numerous children with autism and their families, even though this appalling lack of support should be a priority. This problem doesn’t go away when you throw funding in its direction. This problem affects more than children with autism. This problem concerns healthcare. It concerns education. And it concerns children.

When it comes to this society’s future, I am hard pressed to think of something more important than those three things.

Emily Zhang

2019 Spring Issue