Most kids with autism in Ontario won't get core therapy funding soon, documents reveal

Most of the children in Ontario waiting for publicly funded core autism therapy will not receive it any time soon, the government says in an internal assessment obtained by The Canadian Press.

Days into his new role this spring as Minister of Children, Community and Social Services, Michael Parsa was given a transition binder with information on the files he now oversees.

The document obtained through a Freedom of Information request provides a much fuller picture of the Ontario Autism Program than the Progressive Conservative government has so far publicly disclosed.

The current program budget is $667 million, but that will only serve about 20,000 children in core clinical therapies, the document says. Meanwhile, there are about 60,000 children seeking services through the program and about 7,000 more are added to the list each year.

“Families can access a range of other OAP services, but most children and youth will not receive core clinical services funding in the short to medium term,” the document says.

“More children and youth register for the program than age out each year, which means that the waitlist for core clinical services will continue to grow without further investment.”

Alina Cameron, the president of the Ontario Autism Coalition, said that kind of information on timing is exactly what families have been begging the government to disclose.

Many families pay for therapy for their kids out of pocket while they wait for public funding and they need to know whether to remortgage their house, for example, in order to keep footing the bill, Cameron said.

“They say right in the document that there's going to be years-long wait - it's right there in black and white and they aren't articulating that,” she said.

“Be honest with families. Yes, they're going to be mad, but people need to hear that and plan for the future. They need to realize that there is going to be a gap, they're going to have to wait.”

That internal assessment suggests the program is no better than it was in February 2019, Cameron said.

The Tories scrapped the former Liberal government's needs-based autism program four and a half years ago because it had long waits. Their own needs-based program is currently in place, with long waits.

“They could have invested all this time in building capacity, instead of breaking the program and letting it sit for five years,” Cameron said.

In the meantime, the government gave families on the wait list interim “one-time” funding of either $22,000 or $5,500 depending on a child's age. The government also ended up issuing a second “one-time” funding round, but anyone who registered for the OAP after March 31, 2021 has not received any.

“Depending on when they transition to core clinical services, some of these children and youth may experience a gap in services,” Parsa's transition binder says.

Intensive behavioural therapy can cost upwards of $80,000 or $90,000 a year, families say.

The ministry is monitoring “levels of need and how families prioritize spending their funding allocations” and will give the Treasury Board an updated forecast in the fall on costing and the wait list, the internal document says.

The Progressive Conservatives already more than doubled the program's budget, but more is needed, the document suggests.

“An increased investment in core clinical services will help to increase number of children receiving core clinical services, minimize service gaps for some families, and slow the growth of the waitlist,” it says.

As of March, more than 12,000 children were registered to receive core services, the document says. About 6,400 had completed their determination of needs interview, through which their level of funding is set. The money is then supposed to flow fairly quickly, though some families have reported delays in getting it or not being able to spend it due to a shortage of therapists.

The document does not reveal the number of families actually receiving publicly funded core services - a number the government has previously refused to disclose.

There are, however, more than 3,000 children that were already in government-funded therapy when the Progressive Conservatives scrapped the previous government's plan.

Their funding levels have been maintained until now, but about half will eventually receive less government-funded therapy because their current programs exceed the maximum funding allocation for the new provincial program.

Patrick Bissett, a spokesperson for Parsa, wrote in a statement that there are a “large” number of families who haven't responded to attempts by AccessOAP - an organization helping to administer the program - to register them for core clinical services.

“As AccessOAP does not know when or if unresponsive families will respond to their (core clinical services) invitation, it is impacting their ability to issue new CCS invitations and enrolling more children into service,” he wrote.

“We urge all families who have received CCS invitations to respond to those invitations as soon as possible.”

This report by The Canadian Press was first published July 26, 2023.