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Parents don’t want to exist in a constant state of activism just to ensure their vulnerable children receive the help they need and deserve.
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This month marks the four -year anniversary of a difficult day for autism families in Ontario, and we still haven’t seen meaningful resolution.
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On Feb. 6th, 2019, MPP Lisa MacLeod took to the podium and announced drastic changes to the way autism therapy would be funded in this province. In a bid to shorten the waitlist, which then stood at about 23,000 kids, the provincial government said it would be distributing funding cheques to all eligible autism families, with an amount based purely on their age. The move sparked outrage from parents and professionals alike, as individual needs were being completely ignored in favour of convenience and optics. Kids would either be receiving an amount completely insufficient to meet their support needs, or, in many cases, an amount that far exceeded it.
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After a cabinet shuffle in the summer of 2019, we had a new minister and a promise of a new direction, but years of sluggish response under Todd Smith left us continuing to wait for a functional program.
Smith pledged in early 2021 to get 8,000 kids into the new program by the end of that year. It wasn’t long after that the government change its phrasing, moving the 8,000-child deadline to the end of fall, 2022.
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We now know, thanks to a recent Freedom of Information (FOI) request from the media, that the government couldn’t even meet its pushed-back deadline, with only a little over 1,500 kids receiving new core services funding by the end of October 2022. That’s extremely worrisome, especially given there are more than 60,000 registered in the Ontario Autism Program.
What’s more, the number of kids waiting is no longer being shared publicly by the government. Openness and transparency were promised when Smith took over the autism file, and updates were being posted on the ministry website on the 15th of every month — that is, until this year.
No new numbers were shared on Jan 15, 2023, and the numbers section was removed completely from the website. Not exactly the transparency families were promised.
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Autism families have been through the wringer these last four years during the therapy-program rebuilding process. With a continued failure by the government to deliver on promises made, removing the number updates robbed us of one of the few reliable sources of information we were actually getting.
When’s the last time you heard the premier give an update on the autism program, or even mention it at all? Why hasn’t the current minister responsible, Kanata-Carleton MPP Merrilee Fullerton, made an attempt to keep parents in the know on the autism program development? We shouldn’t have to wait for the press to use an FOI request to get relevant information.
How can the provincial government fix this mess it has created?
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Effective communication would be a great start. We’re long overdue for a real update on the program, and I’m not just talking about a scripted line or two from a ministry staffer in a news article. Put Fullerton behind a lectern, or better yet the premier himself, and have them take some accountability for their lack of progress.
Also, the ministry needs to get back to providing promised monthly number updates, but with improved information that actually represents tangible progress on the new program.
An equally important step would be a willingness from the government to actually listen to the community and make necessary improvements to the new program. There are still critical changes needed to make the program truly needs-based and sustainable, but so far the ministry has shown little desire to act on recommendations for positive change.
Parents don’t want to exist in a constant state of activism just to ensure their vulnerable children receive the help they need and deserve. Four years of chaos is four years too many. Improved government communication, and a willingness to listen and act, could go a long way.
Patrick Monaghan is an optometrist practising in Ottawa, and a father to two children with autism. Twitter: @drpmonaghan
