Postponement of autism program 'devastating' news says Sudbury mom

Families in northeastern Ontario will have to wait an extra year for autism therapy for their children.

That news came this week from the province.

On Tuesday, Minister of Children, Community and Social Services, Todd Smith, announced that the needs-based autism program would not be ready for its expected roll-out in April next year. Instead it will be phased-in with full implementation in 2021.

"When you hear a date like April 2020, you hold on to it — I just need to hold on a few more months. We can make it until then," says Sudbury mother Julia Ritchie. "Then to hear that there's another delay. It's devastating."

Ritchie has two young children who are both on the autism spectrum. She is also part of the leadership team at the Northern Ontario Autism Alliance.

The group is disappointed with the postponement of the program's implementation, as some children in the region have been waiting since 2015 for comprehensive therapy programs.

Ritchie and her husband have been working extra jobs to be able to pay for private autism therapy for their children, but other families have been making even harder decisions in response.

"It could mean that that family remains in crisis for the next year and a half waiting for services. It could mean hopelessness for them, it could mean a really big decision like moving provinces to a better program or selling their home to pay for therapy in the meantime," Ritchie said.

The ministry is making available interim funding for autism services and therapy of either $20,000 or $5,000, depending on the child's age.

But Ritchie says this allotment is what the government announced earlier this year - it's just labelled differently, and still won't cover expensive therapies some children need.

"It's the exact same system except now it's no longer yearly, as promised. It's a one time fund to tide you over until the new program," she said.

Families who received the funding in the summer have already spent their allotment because their child's needs are significant.

"Now they wait for nothing — until at least 2021."

Northern voices on working group

One of the details of the province's autism program the ministry announced this week are the members of the Implementation Working Group.

That team of 13 is made up of experts from across Ontario which include providers, parents, individuals with lived experiences, and some experts who were part of the autism advisory panel.

There will be two northern Ontario voices at that table: Denis Filiatrault from One Kids Place Children's Treatment Centre in North Bay, and Sherry Fournier from Child and Community Resources (CCR) in Sudbury.

CCR provides publicly funded autism services across all of northern Ontario.

Fournier believes it was advocacy from families, and providers in northern Ontario that led to her being chosen for the provincial team.

"We have been working over the last 12 months to clearly articulate the needs of northern families and I really believe that work and highlighting the needs of the north may have led to the invitation," she said.

Fournier says addressing the one-year delay of the autism program will be a top priority for her.

"I really am hoping that we will be provided some creativity over this year to help ease the burden that parents are feeling, and the stress of waiting another additional year."

She adds that northern stakeholders have been coming up with some ideas on ways to implement the revamped autism program.

I am hoping we will be provided some creativity over this year to help ease the burden that parents are feeling.- Sherry Fournier, member of Ontario's Implementation Working Group

"We have been working on and we are ready to go, we have some innovative ideas — and when I say 'we' it is the north: the parents, the partners in the public and private sector —  we're ready to go."

Fournier says she wants to continue to meet with families and advocacy groups throughout the region to bring a full picture forward to the working group.

She adds that there is one key point she will discuss with her new team members and the minister, and will continue to reiterate that point.

"There must be a publicly funded [autism service] option in the north, because not all families will have access to or have anyone to purchase the service from."

Challenging year for families, providers

Ritchie admits the past year has been a roller coaster ride of ups and downs when it comes to news from the provincial government on the autism services and programs.

"It's really hard to plan your life, to plan care for your child," she said.

"If I was a business owner who provided therapy to autistic children I would also have a really hard time planning for staff and planning for my business and growing my business," Ritchie said.

That sentiment is echoed by Fournier, who also says the past year has been difficult for her and the rest of the staff at CCR. That's due to the loss of other staff members, as well as the uncertainty about the agency's future. 

"We were on track to be defunded up until recent announcements," Fournier said.

"Not as challenging — by no means, as it has been for the parents as they desperately wait for services for their child."