An Oakville mother of a 10-year-old boy with autism slept in her minivan outside Premier Doug Ford's office in the hope of getting more supports for her child.
Stacy Kennedy turned up at the premier's constituency office in Etobicoke on Thursday morning, where she remained overnight and into Friday.
"I'm gonna be a mom with my lawn chair sitting outside the office, and I'm not going away until this significant, horrific, systemic barrier is acknowledged," Kennedy told QP Briefing before her sit-in. "A child has been marginalized from accessing health care in Ontario because he is autistic, so giving cheques when a child should be receiving services is inadequate."
Kennedy said her son 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. Sam, who is on the Ontario Autism Program (OAP) waitlist, is a SickKids patient and needs to have dental procedures and an oral bone graft done. Preparing for these would require therapies to help Sam overcome the oral aversions, Kennedy said.
The problem, Kennedy said, is that local service providers have told her that she would need to wait for funding through the autism program or pay out of pocket, even though some services are available to children without autism. The family has been paying for whatever therapy they can, but it's less than half of the clinically recommended amount, Kennedy said.
"I have asked for help hundreds and hundreds and hundreds of times," she said. "A child who's never eaten food can't access health care because we're referred to the Ontario Autism Program where we sit and wait and we languish on a waitlist."
The Progressive Conservative government has faced ongoing criticism since it first tried to overhaul the autism program in 2019. It is currently working to roll out the latest version, but several advocates have said it's too slow and not needs-based. In the meantime, the government has provided interim funding to families — $5,000 or $20,000 depending on a child's age.
While Sam received two $5,000 cheques through the OAP last year and recently, the funding isn't enough to cover the therapy he needs, said Kennedy.
"I don't want to speak about this publicly, we are incredibly private, but we have no choice at this point, we literally got a cheque for health care," said Kennedy. "He was never eaten food and I'm horrified, and this has been the most dehumanizing experience and makes no sense to me."
"My kid is amazing, like the best thing that ever happened to us, he doesn't deserve this," she added.
By Friday afternoon, Kennedy was emotional.
"I'm in a bit of an emotional phase of this experience at this point in terms of how defeated I feel," she said by phone. "I'm still here, begging for help." Kennedy said the only conversation she had with any of the office's staff was on Thursday night when one person came out to throw out the trash. Kennedy said she was given the impression that she was going about this the wrong way.
"I've done it the way that people tell me to do it, and I still don't get any further ahead," she said, adding that she's been in touch with government bureaucrats, MPPs, local services providers and others.
"I feel sad and frustrated, and I just don't know what to do," she said. "This isn't a stunt, this is my life, this is me asking for help."
Irwin Elman, the province's former child advocate whose standalone office was shuttered by the Ford government, turned up to support Kennedy, who had previously reached out to him, on Thursday.
"I heard her journey from her and I tried to help support her through all the conversations she was trying to have with service delivery people at (the) ministry," he said. "I saw the journey, I saw the dead-end and then she decided to take this step, which in my mind is quite courageous and strong."
Elman said he couldn't "unsee" or "unhear" what he had witnessed and heard.
"This parent, on behalf of this child, is going to take this stand, and she's right," he said. "She's not being partisan, she's not being political, she just wants some support for her child."
"I'd say to the government, 'How can you not support this child?'" Elman added. "Politics and policy and service has to be the art of the possible ... it cannot start with the art of the saving a dollar."
QP Briefing contacted the premier's office along with two government ministries to ask about Kennedy's situation.
Krystle Caputo, spokesperson for Minister of Children, Community and Social Services Merrilee Fullerton, said she was responding on behalf of the government and noted that a priority for the minister is ensuring children with autism have the supports they need.
"That is why we rolled out immediate one-time funding to the over 37,000 individuals, many of whom have, until now, been on a waitlist for years with little or no support," said Caputo, adding that various governments over several decades have "failed to get these supports right."
"We are fixing a broken system to ensure that no child is left unsupported. While it would be inappropriate to discuss individual cases, rest assured that the minister has directed her ministry to work with all families who need support," she said. "Both the minister and ministry officials are in regular contact and consultations with families and advocates to ensure that the Ontario Autism Program supports the needs of children and their families."