Ontario’s largest children’s treatment center cuts support for autistic youth

Maria Garito’s eight-year-old son, Max Maman, is non-verbal and needs 24-hour care.

As a child with severe – or what is known as profound – autism, he was unable to attend school. However, he has found a place where he feels safe and surrounded by the community three days a week at Ontario’s largest treatment center for children, ErinoakKids Center for Treatment and Development.

But in August, the main clinical services he receives there will come to an end. The center is ending services offered through its paid autism programs because it has not been able to recover costs or hire enough staff.

“By choosing not to help autistic children and young people with core clinical services, they are choosing to crush capacity in their communities and cause irreversible long-term damage in an already urgent search for services and support,” he said. Garito to 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 center temporarily suspended its respite service while it worked to renew that program. But advocates and parents struggling to find support for their children say that with its state-of-the-art facilities, ErinoakKids has a duty to provide core clinical services to children with autism.

Core clinical services are one of the streams of support for children registered in the Ontario Autism Program and may include applied behavior analysis, speech-language pathology, and occupational therapy.

Families say they would have appreciated more consultation down the road, pointing out that other programs have years of waiting lists, making it extremely challenging to find the support they need elsewhere.

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

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

Loewen and Garito both spoke highly of the staff at the center, adding that the support they received also gave them the tools to be better parents for their children.

ErinoakKids mentions funding, staffing issues

In a statement, ErinoakKids says it is not required to offer paid autism programs.

“The decision to end fee-for-service was a difficult one, as we were unable to recover the cost of providing this service and we were unable to hire enough staff to provide this service consistently and reliably” , the center said.

The statement further states that the center will continue to honor paid, scheduled appointments through September 2023.

“Children with autism will continue to receive high-quality evidence-based clinical support through the programs ErinoakKids is funded for, including diagnostic assessment, access to school, early childhood caregiver-mediated programming, and emergency services.”

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

The county says agencies are responsible for their own governance and operations, including staff.

“The need-based Ontario Autism Program is changing the way many autism services are delivered. As more money goes directly to families for core clinical services, the industry is adapting to offer a wider range of flexible and individualized services in a 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 in a comprehensive suite of programs and services designed to support children, youth and their families living with special needs, including autism.

Former Ontario Autism Coalition chairman ‘shocked’

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

“I am shocked and disappointed,” she said. “The quality of services they have provided in the past has been very admirable and it is something parents have been looking for.”

Kirby-McIntosh says she’s heard from parents who are upset and feel they’re being led along because they believe the program is being restructured.

“A lot of parents are really upset by all 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 that it’s the families with profoundly autistic children who will be most affected. affected.

“Serving those kids is so important.”

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

“This feels like an unofficial age limit,” she said, adding that the programs that will remain will not provide ongoing one-on-one services for children over the age of five.

Garito says she has nowhere else to go in August and dreads the day her son enters ErinoakKids for the last time.

“He’s made a connection with the staff there, it’s the only place where he feels comfortable. It’s the only place where he willingly runs into the building,” she said.

“I hope they will reconsider their decision.”