154 Days After the Release of the Ontario Autism Plan and We’re Still Nowhere Near Having a Plan.

On February 6, exactly 154 days ago, Lisa MacLeod, Minister of Children, Community and Social Services, announced that Ontario Takes Decisive Action to Help More Families with Autism. Despite this “decisive action”, it has been five months, and families are still being left in the dark. I thought it might be useful to recap what has happened, and where we are.

• Two different plans have been released, one on February 6 and another on March 21 which removed a few problematic elements of the February plan, including the autism tax.
• Both plans were widely criticized and characterized as a colossal waste of money that would do little to help higher needs kids. In light of those criticisms, the Premier’s Office commissioned Progressive Conservative MP Roman Baber (York Centre) to “review certain components of the government’s proposed plan.” On June 28th, Baber’s report was leaked and the Globe and Mail wrote on Baber’s damning findings.
• In particular, Baber noted that elements of the plan were “pure waste”, that the education system “lacks resources and is not equipped for children with [autism]”, that under the Ford plan “most families of children with moderate to severe diagnosis would be destitute”, that the government’s aggregate waitlist numbers were “over counting” and “fiction”, that the government’s goal to “design a plan that is both needs based and Clears the Wait List” is “impossible” and that “[the] Government’s messaging and details provided regarding the Waitlist and spending on autism services in fiscal year 2018–2019 were inaccurate.”
• Baber’s report provides a summary on why parents have been so outraged: “Imagine a 6 year old child with autism who is non-verbal. The child is making progress with ABA therapy in that she can communicate her needs by alternative methods. A successor government eliminates funding, her parents cannot afford therapy, the child is regressing and hope for the child to improve is disappearing. That leads the parent to reach for the pitchfork.”
• Meanwhile, during this time Minister MacLeod bullied and threatened service providers with “four long years” if they did not publicly support the government’s reforms, referred to families who expressed concern about the policy changes as “professional protestors”, described parents with kids on the spectrum: “you give them an inch and they want a mile” and suggesting the only alternative to the government’s plans were to take funding away “from the violence against women shelters”. Premier Ford referred to families with kids on the spectrum as “[having] their hands in the public trough” after leaving a threatening voicemail to a parent, and Progressive Conservative MPPs have repeatedly called the police on peaceful protesters outside of their office, including one case when grandma and kids went to visit their local Tory MPP. If that weren’t enough, we also had a peaceful protest being run into by a Tory MPPs car.
• The bullying, government lies and failed policies have led to “[f]ailed marriages, second and third mortgages, mounting debt, and suicide attempts both failed and successful”. Or as Lisa MacLeod put it in Question Period on March 19: “It’s been a very difficult time for many families as they come to terms with our policy”.
• On May 30, Minister MacLeod announced the creation of an Ontario Autism Advisory Panel to “make recommendations on needs-based funding model”, which includes a panel member quoted as saying “I hope your children all die under Ford.” The government has not publicly released the mandate of the advisory panel, when the panel will issue their findings, and if those findings will be made public.
• Meanwhile, autism waiting lists were frozen for nearly a year and service providers were instructed not to tell parents that those lists were frozen. Despite the government’s goal to eliminate waitlists, the size of the aggregate waitlists has grown by 2000 children.
• Although supports were to begin on April 1, only a few families started to receive cheques by the beginning of July. These cheques, “in some cases for thousands of dollars, but have no guidance or resources to know what therapies or services are covered by the government.” Unlike under the previous system, the support is not based on a “first come, first served” basis, but rather appears to be entirely random.
• To reduce the potential for abuse and fraud, on February 6th, Minister Lisa MacLeod stated, “We are regulating the profession. We are working with the Ministry of Health right now in order to bring those regulations forward. So right now the Ministry of Health is undergoing a review of many of the Colleges, but this is certainly one of our key components.” Despite cheques having been issued to some families, there have been no new regulations of service providers in the 154 days since MacLeod made that announcement.
• Exactly 22 weeks have passed since the release of the original OAP, and families are still waiting for assistance. If a family was paying for full-time ABA out of pocket, they would have spent $36,300 during this time (30-hours a week at $55/hr, the government’s mandated rate).
• As reported by the Ottawa Citizen, “ For the first time ever at CHEO, parents will be asked for a bank card so their children can receive autism treatment services”, with the CEO of CHEO stating, “we are used to people handing us an OHIP card, not a bank card, so this is a whole new world for us and it will raise clinical, financial and ethical issues.” In a letter explaining the decision, the CEO stated, “for the first time at CHEO, we’ve had to develop a fee schedule for clinical services”, leaving autism parents to wonder if they’re a test case in the privitization of Ontario healthcare.
• On June 20, Premier Doug Ford shuffled his cabinet, replacing Lisa MacLeod with Todd Smith as Minister of Children, Community and Social Services. Since then the new minister has held a couple of discussions with stakeholders on the autism file, but otherwise has said and done little on the file.
• On July 9, former Progressive Conservative nomination candidate Maddie di Muccio suggested that Bill Hogg, who has held the roles of Director of Implementation, Minister Lisa MacLeod and is believed by some parents to be the architect of the government’s autism reforms, of obtaining his position through “backroom deals” involving a nomination battle.

Am I missing anything important? Let me know and I’ll add it to the list.