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TORONTO — The number of children with autism receiving publicly funded, needs-based core therapy in Ontario appears to have only now returned to the level it was at five years ago, before changes by the Progressive Conservative government upended the system, new figures suggest.

Documents obtained through a freedom-of-information request show that as of mid-July there were 8,758 children whose families had a signed funding agreement for core therapy services. Enrolments were steadily rising, the documents show, and that likely continued after July, though the government refused to provide current numbers.

Back in 2018-19, mostly before the Tories' changes took effect, 10,365 children received needs-based services under the Ontario Autism Program, the province's Financial Accountability Office reported. 

That number then declined, as children aged out of the program and others were not being added in the same way when the government switched to a new funding model.

Alina Cameron, president of the Ontario Autism Coalition, which is organizing a protest Monday at the legislature, said she is "enraged" to see a lack of long-term progress in the new numbers.

"I can't believe this few children have gotten through the gate," she said in an interview. 

"Early intervention is key. That's the thing that's drilled into your head as a parent when your child gets a diagnosis. Then you have a ministry who is dragging their feet getting this program up and running. It's scary, because these children will never reach their full developmental potential in their lives because of these delays."

In early 2019, Lisa MacLeod, then-minister of children, community and social services, announced an overhaul of the former Liberal government's autism program. 

Instead of providing children with core therapy based on their individual needs, the new program would see families get up to $20,000 or $5,000 a year for therapy, MacLeod announced, in order to "clear" the waitlist for services — then at about 23,000. Intensive therapy for children with high needs can cost upwards of $90,000 a year, families and advocates say.

Outrage from families prompted the government to ultimately overhaul the program again to make it needs based, though some argue it is still not truly needs based because it is subject to funding caps determined partly by age.

It has also been subject to several delays — it's on its fourth minister in as many years — and only started enrolling new children in core therapy services last summer. In the meantime, the government has given interim one-time payments of about $20,000 or $5,000, depending on age.

By the time new enrolments in core services began last summer, about 3,600 children were receiving publicly funded needs-based therapy, having been grandfathered in from the previous Liberal government program.

The process of signing children up for the new program was at first slow, but now appears to be steadily increasing. 

Documents obtained by The Canadian Press through the FOI request show that between March 8 and July 12, the numbers of children with funding agreements for core therapy services rose between eight and 27 per cent every two weeks.

The amount of funding committed for core therapy has also been rising along with the number of children receiving services, to $387.4 million as of July 12. That is nearly 60 per cent of the annual overall program budget. Other services in the program include workshops for parents and an entry-to-school program.

A transition binder containing information for Michael Parsa, who took over as minister in March, said that at the current $667 million budget about 20,000 children can be funded for core clinical therapies. 

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," that document said. 

The ministry will give the Treasury Board an updated forecast in the fall on costing and the wait list, the internal document said, but a spokesperson for Parsa would not say if that has happened yet.

One challenge is that a large number of families — about 5,000, the documents say — have not responded to an invitation to enrol in core clinical services, the spokesperson said.

"As AccessOAP (an organization helping to administer the program) does not know when or if unresponsive families will respond to their CCS invitation, it is impacting their ability to issue new CCS invitations and enrolling more children into service," Patrick Bissett wrote in a statement. 

If all of those families came forward and accepted, it would cost approximately $166 million, the documents say. 

This report by The Canadian Press was first published Oct. 15, 2023. 

Allison Jones, The Canadian Press