Ontario strategy to tackle autism therapy wait list leaves parents 'very livid'

The Ontario government's plan to reduce autism treatment wait times by gradually eliminating intensive therapy for children five years and older is being harshly criticized by two Ottawa-area parents of children with autism.

"[It's] a horrible blow to our family and so many other children that will be taken off the wait list, that have not even had the opportunity to get services through the program," said Tanya Corey, whose four-year-old son Lucas has been on the intensive therapy wait list for 17 months.

In the $133-billion budget, tabled in February, the Liberals promised $333 million to "redesign and consolidate" services for children and youth with autism.

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This week, the government unveiled its strategy for reducing autism therapy wait times — and one key tenet of that strategy involves eliminating intensive behavioural intervention therapy, or IBI, for children aged five and up.

According to the statement from the Ministry of Children and Youth Services, IBI will be refocused on children between the ages of two and four. Children over five who currently receive IBI will be gradually moved to "more clinically appropriate Applied Behaviour Analysis (ABA) services," the ministry said.

There is absolutely no proof out there that once a child turns five ... they will not benefit from this therapy- Tanya Corey, parent of a child with autism

"The new approach is informed by advice from families, clinical experts and the Autism Spectrum Disorder Clinical Expert Committee," the ministry said.

"It is consistent with scientific evidence and will provide a more responsive continuum of supports."

According to a Freedom of Information request filed by the NDP, thousands more children are on the provincial wait lists than 10 years ago, and there are signs that the number of children receiving autism therapy may actually be dropping.

'Very livid'

Corey told Alan Neal, the host of CBC Ottawa's All In A Day, that putting the IBI cutoff at five years old was completely arbitrary.

"There are other studies that have shown that children between the ages of two and six have the most progress and benefit the most from this," she said.

"There is absolutely no proof out there that once a child turns five ... they will not benefit from this therapy."

Heather Bourdon, whose son Jacob turns five in April, told All In A Day she was "very livid" when she heard the news.

She said the government's strategy may be designed to reduce wait times, but it doesn't address one important underlying factor: the length of time it takes for children to get a proper autism diagnosis. 

"In Ontario, the average age of diagnosis is four years old," she said.

"So if you're not familiar with autism and your doctor is not familiar, then by the time you actually notice [the symptoms] and by the time you wait for the diagnosis, your child will be past this window of opportunity."

$8,000 in one-time funding

As part of the new strategy, the province is planning to establish an advisory group made up of parents, service providers and other experts to make the transition a smooth one.

Families who have children five years and older on the IBI wait list will also receive a one-time payment of $8,000 to "immediately purchase community services or supports based on their children's specific needs," the ministry said.

Corey dismissed that promise as nothing more than "hush money."

"I think it's disgraceful. It's not even a drop in the bucket of what these children would be getting if they were getting the IBI that we were told they were going to get."