Some autism advocates say they're concerned about the province's timeline to get 8,000 children into "core services" by next fall, with one saying it will be difficult to hold the government to account when the target date is after the 2022 provincial election.
"Certainly it is hard to sort of keep the government accountable if they say, 'Okay, well our target is post-election,'" said Mike Moffatt, an assistant professor with Western University's Ivey Business School and an Ottawa parent who has a son and daughter with autism.
"It's going to be hard for voters to know whether or not they're living up to that target, whether or not they'll be able to hit it," he said. "If we have a new incoming government, it's going to be hard for the other parties to sort of make plans and talk about the reforms that they would do when there's so little transparency about the state of the current system."
Officials with the Ministry of Children Community and Social Services said Friday that they had enrolled an initial 600 children in "core services" of the government's new autism program. This comes after Todd Smith, the previous minister overseeing the file, announced in February that the government would start inviting children into core services — a key component of the new program that includes Applied Behaviour Analysis, occupational therapy, speech therapy and mental health services — in March.
Government staff also said their aim was to have 8,000 children off the wait list and into core services by fall 2022. In February, Smith, who preceded the current minister, Merrilee Fullerton, said the goal was to have 8,000 youth in core services "by the end of this year when the program is up and running." A ministry official said Friday the target was for the first full year of the program's implementation.
"It's been already 1,000 days since the announcement of the Ontario autism program, and this idea that even a year from now that we're still going to have more kids on the wait list than off of it, I think is problematic," said Moffatt, referring to the government's initial announcement in Feb. 2019 about an overhaul of the program that led to massive protests.
Since then, the government has doubled the program's budget and offered families "childhood budgets" or interim funding of $5,000 or $20,000 based on age, with some families saying this doesn't cover the intensive therapy their children need. Funding allocations through core services under the new program are also based on age, with a maximum of $65,000 for kids up to the age of nine and decreasing thereafter.
"Kids are aging out of the program, so you've got an entire cohort of kids who are being denied services and will never get the services they need because they'll have graduated into a higher age category that gives them less services," said Moffatt, whose six-year-old son has been on the program wait list for more than four years.
Moffatt said the "arbitrary categories" for funding discriminate against kids depending on where they live and their gender, because children in rural and remote areas and girls on average are diagnosed later than their urban and male counterparts. The ministry has defended the new program, saying the goal was equity amongst those registered.
Angela Brandt, president of the Ontario Autism Coalition, said she also thinks the program has been marked by delays, adding that it's "shocking" the government isn't "getting something faster together before the election."
"It really feels like ... they just wrote us off," said Brandt.
"I think the Ontario Autism Coalition has resigned to the fact that we're not going to get anywhere with this current government and the only action that we're going to see is through the election," she said, adding that the coalition is working on a strategy leading up to the election in an effort to have the Progressive Conservative government voted out.
She added that there was much confusion about Smith's comments and the timeline for the intake of the 8,000 children, but that she expected it to happen much sooner than fall 2022.
"It's been three years that they've just been doing nothing other than talk, we need to see urgency, we need to see those 8,000 children start moving off the wait list now," Brandt said.
Moffatt said he'd like to see the government communicate more with families about the "bottlenecks" in the program and how it plans to move forward.
"Because we're so left in the dark, it's hard for us to understand why this is taking so long," he said.
Kerry Monaghan, an Ottawa mother of two children with autism, one on the wait list and one with a behavioural plan under the previous government's program, agreed, saying a lack of information on the program has been "upsetting."
She also said she expected 8,000 children to be in the program much sooner than next fall.
"They can talk about how wonderful their program is and how it's going to be world class and how it takes time to get it right, but ... this is not what we're seeing on the ground," she said, adding that parents' concerns seem to be "falling on deaf ears."
"And then the worst of it all is that it all seems to be lining up with an upcoming election and families will be receiving cheques as they head to the polls, and for our children to be used as political pawns like that just doesn't encourage any trust whatsoever at all in this government," she said.
The government also said last week it expects to name the "independent intake organization," which would oversee key aspects of the program, soon.
"We have been told that it is coming soon since the summer, so to hear it repeated over and over again that it is soon doesn't carry any relevant weight until it's has actually announced," Monaghan said.
Fullerton's spokesperson, Krystle Caputo, said in a statement that “as a family physician for nearly three decades, ensuring that children with Autism have the support they need is a priority for Minister Fullerton. That is why we rolled out immediate one-time funding to approximately 40,000 individuals, many of whom have, until now, been on a waitlist for years with little or no support."
Caputo said the minister has had "multiple meetings with families, groups, and agencies to discuss their needs through the Ontario Autism Program, and both the minister and ministry officials are in regular contact and engage in consultations with families and advocates." She added that several governments have failed to get program supports right.
"We are fixing a broken system to ensure that no child is left unsupported," she said.
Note: This article was updated to include a response from the minister's office received after publication.