Ontario’s interim funding for autism services creates uncertainty with organizations

Following an announcement in last February, the government of Ontario will now be renewing interim one-time funding for children and youth with autism to provide additional support during COVID-19.

The funding is an interim measure while the province works on restructuring the services currently offered. They are developing a core clinical services program, in which clinicians will work individually with families to learn and address their needs. This needs-based solution will distribute different amounts of funding based on individual assessments of 600 children and youth registered with the Ontario Autism Program.

“I think it’s better when the government distributes support money directly to families, instead of agencies,” Kelly Meissner, founder of Kate’s Kause , said. The a charity was created to raise awareness and funds for Angelman Syndrome. 

“This means families can hire workers at a much higher rate, a living wage, to ensure the employees are well-paid to care for our kids and adults,” Meissner said. 

Given that these kinds of measures normally take a few months to roll out, it is still unclear how these changes might affect those who are eligible. Organizations in Waterloo Region are hesitant to predict how this will impact their services, and the operational difficulties of working remotely have also added to that challenge. 

In the context of the provincial budget, the funds are being redistributed. Previously, non-profit organizations across Ontario received provincial funding to pay for staff, and eligible families received therapy, respite, and various community services free-of-charge.

Now, the families who were on waitlists for free services will be allotted funds to acquire paid services. As part of the temporary solution, the government is allocating an interim payment of $5,000 for children aged six to 17, and $20,000 for children aged one to five.

The age cutoff and notable difference in sums has been met with controversy among parents of children and youth with autism. Neil Butler, who supervises a clinical services program at Sunbeam Developmental Resource Centre in Kitchener, shared some insights from talking to his patrons.

“Part of the problem was that you have some kids getting $20,000, which is a lot of money, and a lot of support,” Butler said.

 “But then you have parents of kids who are 12 or 13 who are still early learners, and who really need a lot more attention than what they are getting.”

Allan Mills, executive director at Extend-A-Family Waterloo Region said funding levels are lower than what families would actually need. 

“If a family’s budget is $5,000 per year, specialized supports can easily cost at least 50 dollars per hour, and that budget is taken up very quickly,” Mills explained. “So families often end up supplementing the provincial budget, and having to deal with some of these high costs on their own.”

Meanwhile, organizations have yet to figure out how they will deal with the coming changes in funding. Currently, non-profit organizations receive funding from the province to pay for staff. With the new system, families will receive the funding directly and the organizations will have to come up with a fee-for-service program.The uncertainty has caused some organizations in the Region to close part of their programs.

“That’s new for agencies. We’re not used to charging people money,” Butler said.“It’s been very difficult to plan, because we really don’t know what funding is going to be out there.”

In addition to the uncertainty, the change in funding affects the organizations’ ability to have high-quality, trained staff. Butler said that, due to the intensive training process, hiring staff requires a lot of time and effort. 

“It’s highly specialized. It takes two to three months to train someone,” Butler said. “For example, it’s very difficult to become a board-certified behaviour analyst. You have to get a master’s degree, and put in a lot of hours and money to get certified…[but] there’s such a high demand for these people.”

The uncertainty and turmoil of local organizations closing and opening means the services they provide may be in jeopardy. 

“We might be in a situation where people are going to have some money to spend, but there might not be enough organizations out there to provide the service,” Butler said. 

Whether this effort to distribute the funds more efficiently will help narrow the gap in service and demand has yet to be seen. In the meantime, hopefully agencies can begin to get a better sense of the local demand for their services, and are able to hire staff accordingly.