Families of children with autism in Ontario are having a difficult time accessing consistent, reliable and transparent information about services and it doesn’t help that the minister in charge has “ghosted” them, advocates said Monday.
The provincial government has been trying to enrol children with autism in a new program since the summer and was unable to reach its target of providing funding to 8,000 families by the end of the fall, though it won’t say by how much.
The government removed updates from its website on the number of children registered in the Ontario Autism Program and how many had received interim funding, and refused to publicly divulge the number of children receiving government-funded therapy in response to media requests.
Meanwhile, communication with families about the program has been spotty, the Ontario Autism Coalition said, and all of those factors are sowing distrust.
Minister of Children, Community and Social Services Merrilee Fullerton has not held a press conference about the program since she took over the ministry in June 2021, nor has she met meaningfully with the autism coalition, they say.
“We’re wanting to have those meetings, we want to share our experiences, we want to help them with solutions,” Kate Logue, the coalition’s vice-president of community outreach, said at a press conference Monday with the NDP.
“We’re being ghosted a little bit there, which is a bit frustrating … Families are very frustrated and it would just be — it would be a really positive move if she could address the community and help us make sense of what’s happening.”
Responding to the NDP in question period, Fullerton said Ontario’s program is a world-class, comprehensive program and defended communications.
“We’ve been reaching out to families through emails, through phone calls, through letters to make sure that people are aware of the registration process,” she said.
Fullerton did not take questions from reporters after question period. Her office said the minister has “met and spoken with a wide range of advocates, experts, and families from across the autism community” and that she was meeting several unspecified “stakeholders” later Monday.
In question period, Fullerton said there were issues and long wait lists with the program as it existed under the previous Liberal government and that’s why this government doubled the budget to $600 million.
Between those two steps, there was a previous attempt by the Progressive Conservative government to overhaul the program, but it was met with such sharp backlash that it went back to the drawing board. What is being rolled out now is the government’s second and delayed attempt.
NDP critic Monique Taylor said it’s hard to assess the effectiveness of the doubled funding when the government won’t be transparent about how many kids are receiving services with that money.
“They say that it’s there, they say that they’re spending it — we’re not sure where they’re spending it because we don’t have the numbers to back it up,” she said at Monday’s press conference.
Logue said it is taking a long time for families whose children have had an assessment of their level of need to actually get the money to pay for therapy. It’s supposed to be a matter of days but for some families it is taking months, she said.
Sara Kitlar-Pothier’s 10-year-old son has been on the wait list for government-funded therapy since 2017. They received an invitation to core services, the program providing key therapies, in October 2022 and signed a funding agreement two months ago, but still do not have the money, she said.
“We can’t afford to pay for the services he needs,” she said.
“I’m in a position with my educational background to be able to pick up training courses and try and help him, but I’m not a therapist and I shouldn’t have to act as one. I’m his mom.”