Local caregivers demand government step up autism support

Kevin Jeffrey
Local Journalism Initiative Reporter

Parents and caregivers are making noise about the struggles they face caring for someone with autism.

A full-fledged protest is happening over two days at Queen’s Park in Toronto, and locally a small collection of parents were camped outside of Thunder Bay-Atikokan PC MPP Kevin Holland’s office on James Street North.

Adrianna Atkins, founder of Northern Autism Families Matter, said attempts have been made to get an appointment or to have a conversation with Holland.

“[The governing Progressive Conservatives] don’t like to talk, [all] we get the generic message [which states that parents] have all [kinds of services available], but it’s not true,” Atkins said. “That’s the problem, they do start discussing the things that they have accomplished, [but what they don’t say is] that it’s taken them four years to get there.”

The province-wide protests come after new reporting from The Canadian Press that suggested that as of mid-July, there were 8,758 children whose families had a signed funding agreement for core therapy services.

Before the PC’s changed the system, reporting from the Financial Accountability Office showed that 10,365 children were receiving needs-based services under the Ontario Autism Program in 2018-2019.

Sarah Potts, the mother of twin boys who are three and half years old, said there are still over 60,000 kids on the wait list.

“Families [have that] diagnosis and can expect to wait between five and seven years,” Potts said. “[Premier] Doug Ford came into power and [proclaimed that this] needs-based program [is going to be world-leading], and [instead] everyone has just sat on a wait list.”

Potts noted that families she has talked to who have left Ontario have been able to access funding for clinically prescribed therapies for their children within weeks or months.

Back in 2019 Lisa MacLeod, then-minister of children, community and social services, announced an overhaul of the former Liberal government’s autism program, which meant families would receive up to $20,000 or $5,000 a year for therapy.

Public backlash forced the government to ultimately overhaul the program again to make it needs based.

The province has given interim one-time payments of about $20,000 or $5,000, depending on age.

Atkins’s eight-year-old son Marshall was diagnosed with autism at an early age, and she had to move to Thunder Bay for five months to get him behavioural therapy.

“It’s truly unfortunate that the government doesn’t see him as a human, but rather a number. He is so much more. If he had the proper supports that were recommended in the beginning, we wouldn’t be here,” Atkins said.

Atkins added that Marshall is not receiving the full therapy that he desperately needs, and that was recommended by clinicians.

Potts got her twin boys diagnosed before their second birthday, and quickly found out that help for their boys comes in short blocks and can come at a high cost.

“I will admit, I come from a situation where we’re able to make that happen and pay privately for lots of services. But there are thousands of families that can’t do that,” Potts said. “So, these children are in critical developmental stages, not able to get therapy that’s clinically prescribed to them. I just think that’s devastating.”

In response, a spokesperson for the Ministry of Children, Community and Social Services said the government has built a new program that was “developed by the community.”

“Over 40,000 children and families have received support through multiple streams in the program, including behaviour plans, childhood budgets, interim one-time funding, caregiver-mediated early years programs, entry to school, and/or core clinical services,” the response reads, adding the program’s budget has increased to more than $660 million.

The door of Holland’s office was locked and they were only accepting meetings by appointment.