Virginia Mazzone-Ahou’s 10-year-old son Anthony spends one day a week at school and four days a week at a therapy centre in Durham, Ont., for children with autism. But come June, his funding is about to be cut by two-thirds.
Anthony is just one of at least 4,000 kids impacted by changes made to the Ontario Autism Program.
Parents and advocates of the autism community say they have had enough of their five-year battle with the province, fighting for support for children with autism.
Advocates say the Ontario government is failing to meet the needs of parents and children with autism in the region.
New guidelines set an age cap on funding, which means as of this spring, thousands of Ontario students in the legacy autism program will have their intensive therapy cut and be moved into the school system. Youth and parents say they’ve been left in the dark, with no communication of a set plan, and no transition process in place.
“It’s shameful for this government to not think of a better plan, knowing the funding was going to be reduced the way it was, and the autism community doesn’t deserve it,” said Mazzone-Ahou.
The parents say there are issues with the funding framework because their kids’ needs don’t decrease as they get older – if anything, they increase.
“To deny thousands of children medically necessary therapy to give them the opportunity to thrive, is nothing short of shameful, its despicable, and it has ruined so many lives,” said an emotional Mazzone-Ahou.
“It’s not a needs-based system at all, and that’s why my son will be losing three-quarters of his treatment by June,” said Mazzone-Ahou. “For him to be cut three-quarters of his hours is devastating, and it will cause anxiety for him and the school.”
The biggest worry is the lack of consistency and the chance for regression without necessary therapy.
Tara Stone, whose son is in therapy five mornings a week, has the same frustrations.
“This has been clinically prescribed to what our children would need, but unfortunately the ministry is not offering this to children,” said Stone.
Mazzone-Ahou and Stone say they simply just feel like the provincial government doesn’t care.
“The fact that we have had four ministers over the past five years just shows how little the government cares about this file,” said Stone. “We would not be here begging for support and services if we weren’t in a crisis.”
Stone says parents have had to become full-time advocates while caring for their children with autism along with going to their day jobs to support their families.
In a statement to Global News, the Minister of Children, Community and Social Services says more than 40,000 children and youth have received support and funding, and funding for autism services has doubled to $600 million.
Minister of Education Stephen Lecce argues the provincial government has also increased educational funding and supports for schools to handle this wave of incoming students.
“We accept there is more to do,” he told Queens Park. “It’s why we invested $92 million this year alone, and hired 3,200 additional (educational assistants).”
Officials with the Durham District School Board and the Durham Catholic District School Board say it’s difficult to know exactly how many students will be impacted, and that they’re aware these students will need intensive support.
Parents like Stone believe the needs of the children will be too much for schools to handle.
“We can’t expect the school system to take the place of therapy,” said Stone.
The Ministry of Education tells Global News the Behaviour Expertise Amount (BEA) funding is being provided for school boards to hire board-level applied behaviour analysis (ABA) professionals to provide training opportunities that can increase their capacity to provide resources for students with Autism Spectrum Disorder and other special education needs. This BEA allocation has been projected to be $39 million in 2023-2024.
But Stone says they will continue to advocate until changes are made to meet the needs of parents and children with autism.
The reality is, she says, the kids’ lives are impacted by intensive behavioural therapy.
“The impact it can have on their lives, and the chance to learn life skills to learn independence,” said Stone, “ we have seen that. How can we not want it for all the children who are waiting?”
Advocates want the program re-evaluated, re-done, and for the waitlists that last years to be removed.
“People believe we are looking for a handout,” said Mazzone-Ahou. “This is not a handout. This is medically necessary. This is our kids’ education, and they deserve an opportunity like everyone else.”