Thunder Bay·In Depth

Parents losing trust in Ontario government as autism program wait list grows

Three years after a revamp to the Ontario Autism Program was promised to improve access, families say they're losing faith in the province, and share stories of how long wait lists and limited funding for a needs-based program are affecting them.

50,000 children waiting for needs-based program that now includes 600 families

Adrianna Atkins and her son Marshall live in Manitouwadge, Ont., and drive nearly 400 kilometres to Thunder Bay to access the behavioural therapy the six-year-old has been prescribed. Atkins is among parents disappointed in how changes to the Ontario Autism Program have worked out. (Submitted by Adrianna Atkins)

Three years after a revamp to the Ontario Autism Program was promised to improve access, families say they're losing faith in the province.

Since 2019, when the province announced its plan for a new funding and services model for the program, the number of children registered and waiting to enrol has grown to more than 50,000, according to provincial figures,

So far, only 600 children have been included in the needs-based program, which got underway in March and provides funding for "core services" based on the individual need of each child. Those services include applied behavioural therapy and speech language pathology, which are important for many children with autism spectrum disorder, a neurological condition that can affect how they communicate and relate to the world around them.

An Ontario pledge to clear wait lists by 2020 hasn't been met.

In March 2021, the province said it would have 8,000 families enrolled in the program by the end of the year. It is unclear if that will still happen, and the government did not provide a timeline to CBC News of when it was aiming to end the wait list.

"I don't think this government's going to make good on their promises. They've missed every single self-imposed deadline and every single self-imposed target. Every single one," said Alina Cameron, vice-president of research and the northern representative on the Ontario Autism Coalition in Thunder Bay.

Seven-year-old Fiona Cameron has been on the wait list to get into the Ontario Autism Program for four years. Her mom Alina says she still has no idea when Fiona will get the consistent, funded therapy that she needs. (Submitted by Alina Cameron)

Many families received interim funding during the pandemic — $20,000 for children five and younger, $5,000 for children aged six to 17. But Cameron said that money has long run out for most families, including her own. 

Cameron's daughter Fiona turns seven in December, and has already been waiting for permanent support from the Ontario autism program for four years.

Cameron said her family accessed the one-time interim funding last year at the outset of the pandemic, and received $20,000 because Fiona was under six. They received a $5,000 top-up a year later, after her sixth birthday.

That's a far cry from the $90,000 that makes up the total annual bill for Fiona's behavioural therapy. Cameron said her family pays for as much as they can out of pocket because the therapy is essential.

"Without it, she can't learn not to run into the street. She can't learn what is dangerous and what isn't," Cameron said. "This opens doors to everything in her life. It's critical."

Issues for northern families remain unaddressed

Cameron said families are scraping by to get their children as many supports as they can, with those in northern Ontario facing additional barriers. In rural areas, some have to drive long distances just to access care. 

Adrianna Atkins said she spent a lot of the pandemic at home in Manitouwadge, about 400 kilometres northeast of Thunder Bay, with her six-year-old son Marshall.

Marshall Atkins is obsessed with the solar system and dressed up as an astronaut for Halloween this year, his mom Adrianna says. (Submitted by Adrianna Atkins)

"He's obsessed right now with the solar system. He has this little whiteboard with markers and he'll write all the planets in order and in the colours that they are," said Atkins, a single mom on the Ontario Disability Support Program. 

Marshall requires intensive behavioural therapy Atkins said he can only receive in Thunder Bay.

But the government didn't provide any additional funding for travel. As a result, Atkins said, she and other parents had to use some of the interim funding for other expenses. 

"Those types of decisions really weigh on you as a mom. You don't know if you're doing the right thing and you have no one to turn to for advice."

Within five months, all of the $20,000 she received was spent.

She said her son Marshall is now going on more than a year without services.

"Everything that he learned last year is basically gone down the drain, because there has been no maintenance, no checkups, no follow through." 

Stressed out and burnt out, Atkins said she had to be hospitalized at one point during the pandemic because of her mental health had deteriorated.

"There's no light at the end of the tunnel."

Limited professional capacity in north

Another issue families in northern Ontario face is difficulty recruiting and retaining professionals.

Another parent, Anne Antenucci, said the problem has become worse under Premier Doug Ford's government.

Antenucci's son Nathan is among the dwindling number of kids who have regular access to services, because he was enrolled in the previous Ontario autism program ushered in by the previous Liberal government under Kathleen Wynne.

But since the current Conservative government announced it was scrapping the old system three years ago, Nathan has seen five different therapists for applied behavioural therapy, she said.

Anne Antenucci says her son Nathan, shown here, has seen five different therapists in three years because of the issue of attracting and retaining professional staff in northern Ontario. (Submitted by Anne Antenucci)

The problem is the family's contract to receive services has to be renewed every few months, Antenucci told CBC News.

"We are constantly in a state of limbo. Routine is so important, but every couple months, our son is sent into a tailspin — which means the family is sent into a tailspin — as we readjust to a new therapist."

The family also doesn't know at what point they'll be forced to switch from the old program to the province's newer, direct-funding program.

"You're constantly looking over your shoulder wondering what's going to happen next. That's no way for anybody to live, especially these kids."

To build capacity to offer more services for more families in northern Ontario, service providers also need a sustainable plan, said Sherry Fournier,  executive director at Child and Community Resources, a Sudbury-based organization that works to improve capacity in the region.

With the province's new program being slowly rolled out, service providers aren't confident they will be able to employ professionals for a long enough time. Fournier said that while there's a need for services, it's uncertain when families will have the funding to pay for that support.

Sherry Fournier, executive director of Child and Community Resources based in Sudbury, Ont., says that while there's a need for autism services, no one knows when families will have the funding to pay for that support. (Twitter)

"Until the program is fully implemented … it will be very difficult for providers, especially in small communities, to be there with a strong workforce," she added.

In a statement emailed to CBC, Merrilee Fullerton, Ontario's minister for children, community and social services, said the government has announced $1.375 million to help build capacity to serve more families in northern Ontario.

But Fournier said the money is spread over two years and a very large geographical area.

"It helps, but that's not quite enough."

Families to meet with minister

A number of families have been invited to a meeting with Fullerton on Nov. 23 to share their stories and concerns with the much delayed rollout of the new autism program. 

Alina Cameron has been invited to those meetings, but said she isn't very hopeful. She's been telling the government what northern Ontario families need for years without urgent action to support them.

"This is an extremely time sensitive file. We're talking about children with developmental windows, and if you miss a few years, that's going to make a large difference in a child's developmental trajectory."