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.

Since 2019, when the province announced itsplan 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 includedinthe needs-based program,which got underway in March andprovidesfunding for "core services" based on the individual need of each child.Those services includeapplied behavioural therapy and speech language pathology, which areimportant for many children with autism spectrum disorder, a neurological condition that can affect how they communicateand relateto the world around them.

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

In March 2021, the province said it would have8,000 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 inThunder Bay.

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 saidthat 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 theOntario 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 Fionawas 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 pocketbecause 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 familiesare scraping by to get their children as many supports as they can, with those innorthern Ontario facing additional barriers.In rural areas, somehave 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.

"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, asingle mom on the Ontario Disability Support Program.

Marshall requires intensive behavioural therapyAtkins 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 otherparents had to usesome 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 thingand 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 previousLiberal 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, shesaid.

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 familiesin northern Ontario, service providers also need a sustainable plan, saidSherry 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 aneed for services, it's uncertainwhen families will have the funding topay for that support.

"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 governmenthas announced $1.375 million to help build capacity to serve more familiesin northern Ontario.

But Fournier saidthe 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 saidsheisn'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."