Monaghan: No, the Ontario autism program is not set yet

To truly help autistic children, Doug Ford’s government must swallow its pride and acknowledge past and current failures.

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Three years have passed since the provincial government dismantled the Ontario Autism Program (OAP), and the situation hasn’t improved much since then.

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The waiting list for therapy funding, which was only around 23,000 children in 2019, was an issue that needed to be addressed. I don’t think anyone disputed that. The minister responsible for this file at the time, Lisa MacLeod, MPP for Nepean, often cited this waiting list number as the main motivation for the redesign of the program.

The initially proposed changes, however, drew widespread protest, as the new system would favor quantity over quality of care. Age-based checks were to be issued to families, completely ignoring individual needs. Essentially, children would receive more funding than necessary or find themselves desperately underfunded for the recommended therapy.

It wasn’t good health care, it wasn’t good business.

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Despite an increased budget, Doug Ford’s government has consistently underinvested in the autism agenda, leaving families frustrated and unsupported. We are now several years and two cabinet reshuffles later, and no better.

Only about 650 children have been enrolled in the new basic services program, although in February 2021 then Minister Todd Smith said there would be 8,000 children by the end of that year. The current claim now is to have those first 8,000 children enrolled by fall 2022. They continue to move the goalposts.

Meanwhile, the waiting list continues to grow, with approximately 53,000 children now enrolled in POSA, all awaiting funding for needs-based therapy.

Now imagine for a minute that you are a family on the old waiting list in 2018, with a child with severe autism, after you were told it was almost your child’s turn to enter the program. ‘autism.

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Enter Lisa MacLeod promising to improve it. The waiting list was “inadmissible”, she said. “I won’t stand it,” she said.

Never again would a child enter the old needs-based program. The waiting list was now frozen and children instead began to receive invitations to apply for a check based on their age rather than their needs. If you were over six, that amount would only be $5,000.

Families on the waiting list in need of significant support have had the rug pulled out from under them, after potentially waiting years… for nothing. The recommended therapy is up to $80,000 per year, which you could have gotten under the old program, but families with older children would now only be eligible for 1/16 of that amount.

Then, to rub salt in the wound, these families would struggle to continue supporting their children for the next three years, many going into massive personal debt to fund therapy out of pocket, painfully observing how little progress the government was making to fix the program.

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Even the latest offering is not the needs-based program we all hoped or expected. It is still terribly imperfect.

The whole situation is infuriating. The parents are tired. The parents are angry.

We just want the best for our children, but we feel like the government is failing us and not giving our children a real chance to succeed. He doesn’t seem to listen to reason.

So how is this all fixed then?

To do it right, the government must swallow its pride and acknowledge past and current failures. He must be willing to listen and make the changes necessary to help this new program succeed, and that must happen now.

Funding should be based on clinically assessed need, not age. Also, it should not be given in arbitrary fixed amounts, but rather reflect the true cost of delivering the recommended therapy hours. Everything else is waste.

Done right, the Ontario Autism Program could be an incredible support system for families. The fact that we are three years into this fight and still so far from the finish line is heartbreaking.

Families deserve so much better.

Patrick Monaghan is an optometrist practicing in Ottawa and father of two autistic children. Twitter: @drpmonaghan

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