Ontario's largest children's treatment centre making cuts to support for autistic youth

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 profoundautism, 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, ErinoakKidsCentre for Treatment and Development.

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

"In choosing not tohelp autistic children and youth with core clinical services, they are choosing to crush capacity in their communities and causeirreparablelong-term harm in an already dire search for services and support," Garito told CBC Toronto.

• Parents left in 'huge lurch' after centre for children with disabilities suspends respite service

On its website, ErinoakKids says it servesmore 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 parentsstruggling 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 childrenregistered 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 staffat the centre, adding the supportthey received also gave them tools to be better parents totheir 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."

• Some parents are leaving Ontario because of frustrations with its autism program

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 millionin 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 fundedand are paid for by the families.

Theprovince says agenciesare 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 millionin the Ontario Autism Program and$891 million toward a comprehensive range of programs and services designed to support children, youth, and their families living withspecial needs, including autism.

The Official Opposition NDPlaid the blame on a government they say is "more interested in helping themselves and their insider friends than real people in Ontario.

"[Premier Doug] Ford's Conservatives created this mess with their underinvestment in publicly funded autism programs, which help treatment centres like ErinoakKids deliver both clinical support as well as fee-for-service supports," said NDP MPPMonique Taylor, opposition critic for children, community and social services, in a statement.

"This government needs to get the funding for these critical programs out the door and fix their broken funding model for autism services in Ontario."

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 takingresponsibility for this," she said, addingit'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."