'The dialogue is open': Mother who camped outside premier's office for autism supports is headed home

The Oakville mother who set up camp outside Premier Doug Ford's constituency office to draw attention to the need for more supports for her son with autism is headed home after one week.

"The dialogue is open," Stacy Kennedy told QP Briefing on Thursday morning after receiving a promised call from Ford on Wednesday evening. "I'm ready to start up the car and head back home."

Kennedy had just gotten off the phone with Minister of Children, Community and Social Services Merrilee Fullerton, a Thursday morning call that resulted from her conversation with the premier and offered her hope about movement on her son's case.

"She's open to learning ... and a dialogue has started, she's looking into our particular case," said Kennedy. "That was a good discussion, Dr. Fullerton comes from the medical background so she understands systemic barriers in the health-care system."

Kennedy said she's hoping to get more information next week on her son's case, "and in the case of many other families waiting on the wait list in terms of seeing where the efficiencies will happen and how can they get more invitations to core services flowing."

Core services are a key part of the Progressive Conservative government's new autism program and include applied behaviour analysis, occupational therapy, speech therapy and mental health services. The government has been rolling out invitations to families for core services, a process that would result in funding being provided to families to use for these treatments.

While the new program is being implemented, the rollout of which has been marked by delays, families were able to apply for interim funding. Kennedy's son Sam received a total of $10,000 in 2020 and 2021, but she said this, along with the money the family has paid out of pocket, isn't enough to get him the support he needs.

Sam has a severe oral aversion and feeding disorder associated with his autism diagnosis. As a result, he cannot eat solid foods and is only able to drink a prescribed formula. He's on the Ontario Autism Program (OAP) wait list and is a SickKids patient who needs to have dental procedures and an oral bone graft done. Kennedy said preparing for these would require therapies to help him overcome the oral aversions.

Kennedy said that while she waits to hear back from the government, she'll "put on my patient hat," but also informed the minister she would have to return to her lawn chair outside the premier's office if there is no progress.

"I was very friendly and I told the minister that I've made friends with some of the neighbours here, who I will probably come back and visit, so if there is not movement, my visit will come sooner rather than later," she said.

The premier, Kennedy said, called her around 8 p.m. on Wednesday, the same day he was asked about her situation at a press conference and promised to call her. It was a short conversation in which Kennedy, who had been parked outside his office since last Thursday, said she tried to appeal to the premier's business-minded thinking.

"No businessman wants to spend more money and accomplish less, right, and that was kind of a key factor of the discussion and he was open to that," she said, referring to the premier's previous statements about doubling funding for the autism program.

"It was nice to speak to the premier, I appreciate it," she added, noting however that he stuck to several "talking points." He also suggested an in-person meeting at a later date, something Kennedy welcomed so she could discuss "the changes that have happened in the last three years and why people are still so upset."

"I'm happy he reached out, I'm disappointed it had to be in this manner," she said. "I don't want to be here. I didn't want to do this. I had no other choice and most families in Ontario fighting against the systemic barriers of having a disability would say the same thing, it's just it's incredibly difficult to navigate the system that excludes you all the time."

Reflecting on the past week that involved sleeping in her minivan, sitting in a lawn chair during the day, having strangers come visit her from outside the city and bringing her food and encouragement, Kennedy said the people she met along the way helped keep her spirits up.

"I'm tired, I feel heard, I'm inspired by the Ontarians that I have spoken to," she said. "I came into this without a plan, I literally didn't even know where I was going to use the washroom, and the community stepped forward and said 'we've got you' ... the best of humanity has come out, I'm on a first name basis with a lot of these neighbours."

Kennedy said she doesn't have regrets.

"I was just an angry mom, not knowing what to do anymore. I hit every roadblock," she said. "I'm disappointed that it took this to kind of get movement for my son and potentially the movement of invitations for core services, but I would do it again."

Krystle Caputo, spokesperson for Fullerton, confirmed that both the premier and the minister had called Kennedy, but wouldn't provide details of their conversations.

"We take any feedback we receive from families seriously as we work to refine, improve, and roll out the Ontario Autism Program," she said.