UPDATE: Ontario Autism Coalition descends on Kanata-Carleton MPP’s office in protest of wait list

UPDATE: In a statement sent to CityNews Ottawa late Saturday afternoon, Krystle Caputo, a spokesperson for the MPP had this to say:

“Supporting children with autism remains a priority for our government. We are implementing a comprehensive, needs-based autism program and providing regular updates to families as new elements of the program roll out. More than 37,000 children are now receiving support through existing behaviour plans, childhood budgets and interim one-time funding. This is support for three times more children than under the previous Liberal government, who neglected this program for years.”

They add the program will offer multiple pathways and range of service to respond to the individual needs of service.

“While we implement new elements, we will continue to support families as they transition to the needs-based program.”

In the interim, Caputo said that the government had provided families during the COVID pandemic a one-time funding to those eligible who submitted their registration form and supporting documents by March 31.

The funding was a way to help families pay for support and services that were most important for their child. 

“Eligible families who received a childhood budget or interim one-time funding will be able to receive additional payments of either $5,000 or $20,000, based on their child’s age, as of April 1, 2021, to purchase eligible services and supports they feel are most appropriate for their child,” Caputo said, adding that they will continue to seek input on clinical capacity from families and service providers. 

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It’s been three years of no movement from the provincial government on Ontario’s Autism Program, the Ontario’s Autism Coalition says, and families are tired of feeling pushed aside and forgotten to the detriment of their children.

That’s why families from across Ontario came together on Saturday to rally near the office of Kanata-Carleton MPP Merrilee Fullerton — to demand answers as to why the program’s wait list remains stagnant through three different MPPs during the last three years.

“It’s really about letting them know that our children are struggling and the damage they’ve done is irreparable harm to an entire generation of children with autism,” Angela Brandt, president of Ontario Autism Coalition, told CityNews Ottawa.

“This entire generation of children will not have access to early intervention, and as a result their quality of life is now negatively impacted. And in the long-term, the cost for supporting these children that didn’t have this early intervention is going to be astronomical — it’s probably going to be ten-fold what it would have cost to give them these early self-help skills.”

Brandt, who has a 16-year-old son with autism, says her family was lucky to have access to early intervention programs 14 years ago. Without it, she says her son wouldn’t have been able to be as much a part of the community as he has been able to be.

But now, Brandt says, the growing wait list for access to these early programs has been one of the biggest barriers — a waitlist she says hasn’t moved in years.

CityNews Ottawa reached out to Fullerton for comment but did not hear back by time of publication.

Before the pandemic, Brandt explains, families of children with autism were already in crisis. Now with the pandemic, their situation has been exacerbated, and it’s made families go from angry and frustrated to despondent.

Despite that, however, parents continue their fight for their kids.

At this point, Brandt adds, the fight is for a new government.

“We always try to keep hope — that’s all we have,” she said. “That’s why this protest — to keep this hope alive.”

Brandt says, at this point, something would be better than nothing, so why not implement a program even if it’s not the gold standard and then “tweak it as we go.” At least, she adds, it will allow access to support now.

“Hurry the ‘F’ up,” Brandt stresses. “It’s been too long. It feels like this government has abandoned this community. They’ve delayed for too long. They purposely design this program to be a non-starter. What is the delay? We still don’t understand why it’s taking them this long.”

According to Autism Ontario, there are about 135,000 people in Ontario who have autism; and about one in 66 Canadian children from the ages of five to 17 have autism.

About 74 per cent of caregivers of people with autism report long wait lists as the largest barrier to service.

Latest figures from the Ontario Autism Program on the Ontario government website say there are about 48,730 children registered with the program.

Before a family can receive services, they must receive an invitation before they’re able to sign up.

Programs are free of charge and available for a period of up to six months per child.

Back in March, the Ontario government said it would start offering core clinical services on a child’s individual needs. These services include applied behaviour analysis, speech-language pathology, occupational therapy and mental health supports.

However, the Ontario Autism Program section of the Ontario government’s website has no mention of wait lists, how many families are on it or if there is a plan in place to chip away at it.

It does say, however, that the government will invest $3.8-million, in addition to $5.5-million of annual funding, for the program — money that will help with diagnostic assessment for kids by reducing wait lists and wait times.