Ontario autism services enrollments plummet despite long waitlist: docs

Progress in Ontario to get children with autism access to publicly funded core therapies has slowed so much that enrollment is sometimes declining, despite a growing waiting list, documents obtained by The Canadian Press show.

Progress reports on the Ontario Autism Program show that the gap between the number of children seeking services (73,031 at the time of the most recent data in late June) and the number receiving funding for essential therapies (14,113) is widening.

Enrollment and funding for core services, including applied behavior analysis and speech therapy, have declined over the past year, but information obtained through a request under the Freedom of Information Act shows that there are now weeks when the number of children served actually declines.

The ministry monitors progress every two weeks and from May 29 to June 12, for example, the number of children with an active funding agreement for core services fell by 70. During the same period, 491 more children were added to the waiting list for services.

“There’s going to be a reckoning,” said Alina Cameron, chair of the Ontario Autism Coalition. “You’re going to let the community know about this and they’re going to be very angry because what this means is that the estimated five to seven year wait just got longer.”

The wait time is an estimate from the autism coalition, not a government figure. Families on the waiting list are not given an indication of how long their wait will be, although many have asked as they try to calculate how long they can afford therapy in the meantime.

A ministry spokesperson said the decline in the number of children enrolling in core clinical services “may be due to more children/young people leaving the program (due to aging or other reasons) than enrolling … in the two-week period.”

Jaime Santana, president of ONTABA, the association that represents behavioral analysts, said the slow pace of enrollment in government-funded core services is also affecting providers. It’s leaving providers unable to build capacity, which in turn is leaving some families with funding in hand but nowhere to spend it, he said.

“The slower it (Ontario Autism Program) works, or the more bottlenecks it creates, the more impact that has on the clinician’s ability to expand services and make them more available,” he said.

“You have to keep things going and if you don’t know how much funding is available and who gets what funding and when, it’s very difficult to make decisions about whether to expand or not.”

Documents previously obtained by The Canadian Press through Freedom of Information proceedings show that ministry officials have warned that the program can only serve about 20,000 people in its core activities. Cameron of the Ontario Autism Coalition said she believes that is the source of the bottlenecks.

“We believe this is because they have reached the limit of funding for the Ontario Autism Program,” she said.

This year’s budget is $720 million, more than double the funding under the previous Liberal government.

When the Progressive Conservatives scrapped the Liberal Party’s autism program and introduced their own in 2019, there was a waiting list of 23,000 children and about 10,000 children received needs-based therapy, according to the province’s Financial Accountability Office.

The new program, introduced in 2019, was eventually shelved due to negative reactions, but was subsequently revamped and launched in 2022 after several delays.

A major factor behind the current bottleneck may be the needs assessment process, Cameron said. It involves families spending up to four hours on the phone with autism program administrators telling them about their child’s needs. That information is then used to assess how much funding they should get.

But the process repeats itself annually, and the new documents show that the number of reassessments being carried out every two weeks is increasing rapidly.

From March 20 to April 3, approximately 28 percent of assessments were reassessments, and from June 12 to June 26, that percentage had risen to more than 38 percent. That is, less than two-thirds of assessments are being conducted to get new children into therapy.

Both the Autism Coalition and ONTABA urge the government to instead rely on assessments by the children’s own therapists.

A spokesperson for the Ministry of Children, Community and Social Services would not say whether Minister Michael Parsa was considering changes.

“The needs assessment process is completed annually with each family to ensure that a child’s changing support needs are reflected over time,” Kristen Tedesco wrote in a statement.

The statement pointed to a number of improvements the department has made to speed up the process, including the implementation of DocuSign and automated processes for reviewing expenditures.

This report by The Canadian Press was first published Sept. 11, 2024.