Autism services strained by funding gaps, and families face long waitlists: Barrie advocate

A Barrie business owner and advocate says autism services are strained by federal funding gaps and families are facing long waitlists.

World Autism Awareness Day is today, Wednesday, April 2, and Amanda Baysarowich, Clinical Director and Founder of IBI Behavioral Services and Unique Minds Academy, is shedding light on the challenges families face in accessing autism-related services.

IBI Behavioral Services operates as a clinical treatment centre offering interdisciplinary support, including Applied Behaviour Analysis (ABA), Intensive Behavioural Intervention (IBI), speech and language pathology, occupational therapy, psychological services, social skills training, and youth and adult services.

Baysarowich emphasized the organization's growth over the years.

"I actually just started it to help out," she explained to Barrie 360 in a recent interview. "I think we had seven or eight families when we began, and my goal really wasn’t to become the scale that we are, but the need grew."

Baysarowich highlights how awareness of autism has evolved and stresses the importance of inclusivity.

"When you're in a school setting or you're in a dance class or gymnastics class, there's going to be some type of a neurodiversity within that group of children," said Baysarowich. "I think bringing awareness to our society and making them aware of what neurodifferences are, what neurodiversities are, you know, it doesn't look the same for everybody."

A primary challenge for families, Baysarowich states, is the accessibility of funding for services.

"Being able to access funding in Ontario right now is a very extensive wait," said Baysarowich. "Any family that is waiting for services for their child or children could wait anywhere from three to five years to be able to access services funded through the provincial government."

Baysarowich also highlights the limitations within the education system.

"We are seeing very consistently that parents are turning to us because their children just aren't getting the support that they need in the classroom," she stated. "And again, that is at no fault of the schools, or the principals, or the teachers. It's primarily on the heels of the government at this point in time to be able to provide more resources and more funding."

A significant concern raised by Baysarowich is the financial struggles associated with Jordan’s Principle, a federal funding initiative designed to ensure First Nations children receive the services they need. It was created after Jordan River Anderson, a young boy from Norway House Cree Nation in Manitoba, died in 2005 at the age of 5 in hospital while the provincial and federal governments could not agree on who was financially responsible for his home care.

She claims that recent delays in funding have led to service disruptions.

"As of October, November last year, our accounts, unfortunately, at our school and our clinic began to amount significantly, and there was a significant amount of nonpayment," stated Baysarowich. "Our agency, actually around Christmas time, had to take a loan out because Jordan’s Principle had owed our two establishments upwards of $600,000."

According to Baysarowich, these funding shortfalls forced children out of services with little notice.

"Some of them without notice, some of them with 24 hours’ notice, and some of them being told they can't return after Christmas. So you can imagine the crisis state that this left families in."

Federal Indigenous Services Minister Patty Hajdu has said that $8.8 billion has been invested in Jordan’s Principle since 2016, with funding set to continue through 2026. However, Baysarowich questions whether the support will reach those in need.

"I think at the end of the day, this is very much a political move, she said.

"If this was coming forward, then I would like to understand and know why the clients that are at the highest risk that are with us that have been removed have not actually gained approval or received their funding and why my agency still has to sit here in an outstanding payment with Jordan’s Principle with hundreds of thousands of dollars outstanding still. So, do I think it's going to happen, and do I think they're going to follow it through? It's really hard to say."

She calls on government officials to step up and ensure that children in vulnerable situations receive the necessary support.

"I want children to have access to services, vital services, services that are life-changing. ABA therapy is evidence-based treatment. It is one of the only scientifically proven methods to assist children with autism to live a meaningful life."

Despite her frustrations, Baysarowich remains committed to advocating for families in need.

"We continue to persevere. I will continue to push forward. I will continue to fight for what I know is right for these children."

Listen to the full chat with Amanda Baysarowich on a recent episode of What Barrie's Talking About

- with files from the Canadian Press