Ontario’s largest children’s treatment centre making cuts to support for autistic youth | CBC News

Maria Garito’s eight-year-old son, Max Maman, is non-verbal and requires around-the-clock care.

As a child with severe — or what’s known as profound — autism, he hasn’t been able to attend school. However, he has found a place where he feels safe and surrounded by community three days a week at Ontario’s largest children’s treatment centre, ErinoakKids Centre for Treatment and Development.

But come August, the core clinical services he receives there will come to and end. The centre is ending the services offered through its fee-for-service autism programs, saying it hasn’t been able to recover the costs or hire sufficient staff.

“In choosing not to help autistic children and youth with core clinical services, they are choosing to crush capacity in their communities and cause irreparable long-term harm in an already dire search for services and support,” Garito told CBC Toronto.

On its website, ErinoakKids says it serves more than 20,000 children and youth with disabilities and their families each year, including providing autism services. In the spring, the centre temporarily suspended its respite service while it worked to revamp that program. But advocates and parents struggling to find support for their children say with its state-of-the-art facilities, ErinoakKids has an obligation to provide core clinical services for children with autism.

Core clinical services is one of the streams of support for children registered in the Ontario Autism Program and can include applied behaviour analysis, speech language pathology and occupational therapy.

Families say they would have appreciated more consultation on the move, and point out other programs have years-long wait lists, making finding the supports they need elsewhere a huge challenge.

Valerie Loewen, a parent of three autistic children, says ErinoakKids initially gave parents the impression that they were restructuring the services. She fears what this decision means for the entire community.

“We are struggling. It’s a visceral feeling of nausea and chest pain. If Erinoak can’t do this, what are we going to do?” she asked. “It’s going to mean our children will wait, stagnate. They’re not going to reach their full potential.”

Loewen and Garito both had high praise for the staff at the centre, adding the support they received also gave them tools to be better parents to their children.

ErinoakKids cites funding, staffing issues

In a statement, ErinoakKids says it is not required to provide fee-for-service autism programs.

“The decision to end fee-for-service was a difficult one, made because we could not recover the costs associated with delivering this service, and we could not hire sufficient staff to offer this service consistently and reliably,” the centre said.

The statement goes on to say the centre will continue to honour paid-for, scheduled appointments through to September 2023. 

“Children with autism will continue to receive high quality evidence-based clinical support through the programs ErinoakKids is funded to provide, including diagnostic assessment, entry to school, caregiver mediated early years programming and urgent response services.”

ErinoakKids was unable to confirm whether staff would be laid off as a result of the change. The Ministry of Children, Community and Social Services says it provided $112.2 million in funding to ErinoakKids to serve children and youth with special needs through a range of programs. But ErinoakKids says the fee-for-service offerings are not funded and are paid for by the families.

The province says agencies are responsible for their own governance and operations, including human resources.

“The needs-based Ontario Autism Program is changing the way many autism services are delivered. As more funding is going directly to families for core clinical services, the sector is adapting to offer a broader range of flexible and individualized services in an open market,” the Ministry of Children, Community and Social Services said in a statement.

The statement adds that the government has invested $660 million in the Ontario Autism Program and $891 million toward a comprehensive range of programs and services designed to support children, youth, and their families living with special needs, including autism. 

Former Ontario Autism Coalition president ‘shocked’ 

Laura Kirby-McIntosh, the former president of the Ontario Autism Coalition, says these services are the core of the Ontario Autism Program.

“I’m shocked and disappointed,” she said. “The quality of the services they provided in the past has been very admirable and it’s something parents have sought.”

Kirby-McIntosh says she’s heard from parents who are distressed and felt like they were strung along thinking the program was being restructured.

“A lot of parents are really upset by all of this and they’re looking for where to turn and the problem is nowhere — and no one is taking responsibility for this,” she said, adding it’s the families who have profoundly autistic children who will be affected the most.

“Serving those kids is so important.”

She says only offering temporary programs or working with small children is the “easy work of autism,” and that the province desperately needs more agencies willing to work with older kids.

“Now this sort of feels like an unofficial age cutoff,” she said, adding the programs that will remain don’t offer ongoing one-on-one services for children over the age of five.

Garito says she has no where else to go in August, and dreads the day her son walks into ErinoakKids’ doors for the last time.

“He’s made a connection with the staff there, it’s the only place he has been comfortable with. It’s the only place he will willingly run into the building,” she said.

“I hope they will rethink their decision.”