Protest Demanding Action on Autism Waitlists: October 16th at Queen’s Park in Toronto

When my husband and I were 9 we were lucky to have few worries in life. Our son on the other hand was on Queen’s Park protesting for the right to be educated in the way that is scientifically proven to be the best for his needs. Four years later, things aren’t much better. Protesting for funding for core autism services is still necessary in Ontario as children are still languishing on waitlists. On Monday October 16th, the Ontario Autism Coalition is leading a protest at Queen’s Park drawing attention to the distressing situation faced by children with autism in this province.

This is what happened in 2019, and the effect that protesting had. The Ontario Autism Program underwent significant changes under the leadership of Doug Ford’s government. In February 2019, the Conservative government made the controversial decision to discontinue the needs-based autism program and introduced drastic alterations, shifting to a flat-rate funding model. When Lisa MacLeod, the Minister of Children, Community and Social Services at the time, announced these changes, it sparked outrage and widespread criticism. Therapy funding was reduced from full coverage to just $20,000 per year until the age of six and then slashed to $5,000 per year between the ages of six and 18. This sent a powerful message. Families, including ours, were shocked and devastated by the implication that if your child was older than six, they were no longer deemed worthy of the investment. Our son, like many others, continued to make significant progress and learn crucial life skills well past that age. The government’s stance seemed to suggest that he, and others like him, were no longer deserving of the funding necessary to acquire these vital skills.

Their rationale for this move was the extensive wait times experienced under the old program, which had been causing difficulties for families. The decision was presented as a means to “clear the waitlist,” but it was met with strong opposition from many families with children on the spectrum. They were devastated because it meant that children with more high support needs would receive reduced financial support compared to their previous allocations. Protests began immediately, and the autism community faced additional indignities with Lisa MacLeod’s misconduct toward behaviour analysts who expressed their concerns about the changes. She was accused of issuing warnings of potential consequences if they did not endorse her new autism program. This was a government minister whose literal job was to support and protect children, threatening professionals who dedicate their lives to helping nonverbal children with limited life skills and providing support to exhausted families. To say this new government was terrifying for families with children with exceptionalities is an understatement.

To get an idea of the type of families that Doug Ford’s government was harming, watch this segment I produced for CTV’s Your Morning about a family with three boys with autism who had their funding ripped from them because of their age. Telling their story was very difficult for me as I was also fighting for my son’s funding but it was also so important as this government was spinning their nonsense about “clearing the waitlist” and people who weren’t affected by it were buying it because they didn’t know any better. It was crucial to show what the government was really doing to vulnerable children.

Despite the protests and calls for the minister’s resignation, the government initially stood by its decision. However, in April 2019, after numerous protests, adjustments were made, including the government announcing the removal of the income-testing component from the program, as the plan as originally designed would only give those maximum amounts to families making under $55,000. A long review followed as they worked on a new autism program, and while they did that, thousands more children were added to the waitlist.

Now in 2023, children with autism are still suffering on waitlists under Doug Ford’s new Ontario Autism Program (OAP). Michael Parsa was appointed Minister of Children, Community and Social Services after the resignation of Merrilee Fullerton in March 2023. The briefing document provided to Parsa upon assuming his role contains very upsetting information:

  • Only one-third of the children and youth currently on the waitlist will receive core services.
  • The remaining two-thirds will continue to endure waiting periods of up to seven years.
  • The primary factors that can expedite progress on the waitlist are increased funding or children reaching the age of 18.

Families are not only facing the anguish of long waits but are also shouldering the financial burden of paying out of their own pockets while waiting for consistent services. The process of signing up for the new OAP has proven to be challenging and onerous. It requires several hours, often requiring people to take time off work, and places families in the difficult position of having to justify why their child, who has a neurological exceptionality and may require 24/7 care, needs help. The determination of needs interview can be a demoralizing and exhausting experience, as families find themselves having to prove once again to the government why their child deserves support. At the end of our own son’s determination of needs meeting, we were drained, upset and confused at why we needed to be put through this, and I felt for families who didn’t have the privilege of being able to work from home or take a vacation day to complete these meetings. This ordeal further underscores the pressing need for change and improvement in the system to provide adequate and timely assistance to children with autism in Ontario.

So now, families with children on the autism spectrum in Ontario are facing even more challenges. The primary aim of the protest is to shed light on the urgent need for a better and more sustainable approach to support these children. If you are concerned about your child’s future, or if you are exhausted from ongoing delays and missed deadlines, you are invited to join the protest at Queen’s Park on October 16th at 10:00 am to make your voice heard. Protests have influenced positive change in the past, and we firmly believe they can bring about change once more.

Your Turn: What do you think? Leave a comment here…