Parents of children with autism petition Quebec for $12.2M

The parents of around 500 children with autism and other intellectual disabilities took their petition for an increase in resources right to Quebec's national assembly yesterday.

500 children with intellectual disabilities are on waiting list at West Montreal Readaptation Centre

Rylee, 3, has autism and is waiting for care from the West Montreal Readaptation Centre. (CBC)

The parents of around 500 children with autism and other intellectual disabilities took their petition for an increase in resources right to Quebec's national assembly yesterday.

Don Prashker was among the signatories of the petition that was tabled Wednesday.

Don Prashker has worked with autistic children for his entire adult life, and so he recognized the warning signs in his own daughter fairly early on in her life. (CBC)

Prashker knew his three-year-old daughter Rylee would need some extra help fairly early on. She wasn’t communicating, answering when called or making eye contact.

Having worked with children with autism at camps, hospitals and other centres since he was 16 years old, he recognized the signs.

“She was born autistic. Around 16 or 18 months, we noticed that there was development issues that weren’t going as planned and we called in some professional help and an occupational therapist,” Prashker said.

Prashker is one of more than 1,300 people who signed a petition urging the Quebec government to invest an additional $12.2 million into the West Montreal Readaptation Centre (known by its French acronym, CROM).

The petition asserts that long waiting times and late diagnosis in Quebec are denying children the care they need. They say this forces more than 40 per cent of parents to pay for treatments out of their own pockets.

The CROM cited a recent report by the auditor general that said the centre was chronically underfunded.

Children and parents on hold

Although Prashker works for CROM, his daughter is still on the organization’s years-long waiting list for care.

The centre is covered by Quebec’s public health insurance plan, Medicare, but has 500 families on hold.

Not all 500 cases are children with autism, but the majority of them are, said CROM board chairman Gary Whittaker.

“We’ve been underfunded at CROM and in the western part of Montreal for 20 years,” Whittaker said.

He said the funding has not risen in accordance with the growing prevalence of intellectual disabilities, as well as with the growing demand on CROM to provide services.

CROM serves 25% of autistic population

CROM board chairman Gary Whittaker and executive director Dr. Katherine Moxness say the centre serves 25 per cent of Quebec's autistic population and about 40 per cent of the province's people with intellectual disabilities. (CBC)

Whittaker said CROM’s waiting list contains about 40 per cent of the children and adults with intellectual disabilities waiting for care across the entire province. The waiting list dates back before the 2012 election. 

Executive director Dr. Katherine Moxness said the centre’s early intervention program serves 100 children — 25 per cent of the province’s autistic population.

Whittaker and Moxness said the $12.2 million would help take many of those children off the centre’s waiting list.

“Basically an early intervention program costs us as an establishment around 30,000 per child per year and it’s 20 hours of direct intervention with a child,” Moxness said.

Junior Health Minister Minister Véronique Hivon recognizes there is a problem and called the situation concerning and unacceptable. She said the centre has been receiving an additional $1.8 million since last year.

“I'm working on many many aspects right now, one of which is the organization of the services so that they're more efficient. I'm looking at the ways we are intervening,” she said.

Out of pocket

In the meantime, Prashker and his wife have been paying for her private care with a litany of physical and behavioural therapists and specialists out of pocket.

“We’re doing therapy three times a week to what we’re able to afford. We’re doing it all privately. About $100 an hour to $120 an hour — we’re doing about six hours a week now. We’re supposed to be doing about 10 or 12 hours a week now, but for financial reasons, I’m doing what we can afford,” Prashker said.

He is frustrated by the delays in treatment of autism in Quebec, particularly because he said now is the time the biggest impact in improving her future quality of life can be made. He said he and his wife are even considering moving to Ontario to speed up their daughter's access to care.

“With autism you have a very small window of opportunity and it's usually between the ages of three to five, or three to six years old, to make amazing and drastic changes in that child's life,” he said.