Ontario's new autism program a 'pittance' for all, say angry parents

Parents of children on the autism spectrum are protesting the Ford government's new Ontario Autism Program.

Rallies protesting the changes to autism support are popping up across the province

Parents gathered in St. Thomas, Ont. on Feb. 14, 2019 to protest changes to the provincial autism program. (Provided)

Parents and supporters of the autism community rallied outside of PC MPP Jeff Yurek's office in St. Thomas, Ont. on Thursday evening.

They gathered to protest the government's new Ontario Autism Program.

Among them were Londoners Dan and Annette McLean. In early 2016, their three-year-old Blake was diagnosed with moderate-to-severe nonverbal autism.

The couple says Blake has made progress since, but believe that changes to autism support could be major setback for their son.

Blake McLean, 5, has moderate-to-severe nonverbal autism. (Provided)

"It's disheartening to have him do so well and then to have it yanked away," Dan McLean told CBC News.

When Blake was diagnosed, he was immediately put on a waiting list for Intensive Behavioural Intervention (IBI), an evidence-based practice to improve social skills and learning.

Two-and-a-half years later, in October 2018, the McLean family received word that the Thames Valley Children's Centre had an opening for Blake.

The boy was put on a six-month plan that is set to end on May 5, 2019.

Dan McLean says there has been a drastic improvement in Blake's behaviour since he entered the government-funded program.

"He's making more eye contact and is verbally expressing himself more," said McLean. "He's actually understanding what communication means and what it can do for him."

On their latest family vacation, McLean was surprised when his son listened to his command to hand something over.

"It's leaps and bounds for Blake."

The McLean family has seen drastic changes in Blake, who has autism, since he entered an Intensive Behavioural Intervention therapy program. (Provided)

Government introduces changes

On Feb. 6, the Ford government announced changes to the Ontario Autism Program to offer what it describes as more immediate assistance to all families.

The new model seeks to address the lengthy autism diagnostic process, which currently takes an average of 31 weeks to complete.

The government said it also hopes to eliminate the backlog of 23,000 children waiting for autism therapy services in Ontario. Under these changes, those on wait lists can expect to have funds for therapy in hand within 18 months.

"But there's nothing there to wait for anymore," said McLean. "When it comes to the light at the end of the tunnel, Ford has basically blown up the light and crushed the tunnel."

We've been quoted anywhere from $60,000 to $80,000 a year for privatised services- Dan McLean

McLean says the government is essentially taking funding away from existing programs and forcing families to go down different avenues of expensive therapy.

"We've been quoted anywhere from $60,000 to $80,000 a year for privatised services," said McLean.

Under the new program, which comes into effect on April 1, a family can receive a maximum of $140,000 in total funding, depending on the child's age and the family's household income.

Both McLean and his wife are nurses at University Hospital and he says they wouldn't receive nearly enough money to pay for the quality of therapy Blake is receiving now.

A fellow parent at Thursday's rally in St. Thomas calculated that she would receive a daily budget of $14 for her child.

"We joked that we can't even afford to pay for hospital parking with that amount of funding," McLean said.

A ripple effect

McLean also expressed his frustration for the program's lack of transitional planning. His son would ideally continue his therapy at TVCC for another year. While he'll be allowed to complete his program's six-month run, McLean says there's nothing in place for his son after that or even an indication of what is to come.

"For a child that needs regiment and routine, even a two-month gap could mean everything that we've done could be all for a loss," he said.

And without affordable specialized programs, children with autism will likely enter the traditional school system.

McLean is urging the province to listen to parents like him and look beyond the fiscal numbers. (Provided)

"It'll put more stress and hardship on the already stressed education system and teachers," said McLean. "Every child, autistic or not, will feel the effects."

Another rally against changes to the autism program in Ontario is planned for London on Saturday.