'We've had enough': Quebec parents of autistic children form united front to call for better services

With the help of social media, a group of parents has come together as a united front and is demanding that Quebec immediately table a plan to help children with autism.

They call themselves the Autism Coalition of Quebec, and they believe by forming a group, they'll be hard to dismiss.

"It's easy to ignore one person, easy to ignore two," said Tina Chapman, one of the co-founders of the coalition.

"But it's a lot harder to ignore a group of parents who have come together to say, 'We've had enough.'"

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Speaking Wednesday at a family home in Baie-D'Urfé, the coalition outlined what it would like to see in a provincial plan.

Included on their list is the following:

• A strict time frame to obtain a diagnosis. They said it should take no more than four months. If it takes longer, parents should be able to use the private system and receive funds to offset the cost.

• Once diagnosed, children should begin therapy customized to their needs. If no therapist is available from the public system within two months, then funding should be made available to parents to pay for private therapy.

• That treatment and support continue regardless of age. Currently, public funding stops once a child starts Kindergarten.

Long delays in therapy, age limits

Anna Bisakowski, who is also a co-founder of the coalition, said that with the help of therapy, her 5-year-old son Simon, has gone from nonverbal to speaking. However, she's had to pay out of pocket because he had been stuck for too long on the province's waiting list.

"If I waited for the Quebec government to give me some kind of service, my son would not be talking today," said Bisakowski.

• Quebec parents of autistic child call therapy wait times 'appalling'

Now, at his age, Simon is no longer eligible to get any help from the province because under Quebec's rules, once children with autism start regular school, they no longer qualify for publicly funded therapy.

Bisakowski said she pays about $2,000 a month for all of Simon's therapies.

A major problem is the delay between diagnosis and getting approved for publicly funded therapy, said the coalition.

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They estimate that it can take up to three years, which means that once a child is approved, they sometimes only have months before they no longer qualify.

"We want our kids to grow up and thrive. We want them to be able to be functional. We want them to be able to have jobs," said Bisakowski.

"But they need these therapies now."

Plan needed immediately

The Quebec government was expected to table its "autism action plan" before the end of 2016. Lucie Charlebois, the Quebec minister for public health, said it's a matter of weeks before the plan is unveiled.

As for the parents who have been waiting for it, Charlebois offered up an apology.

"I am so sorry we were not able to make it. Still, we are in February, the delay is two months and I'm working hard on it," she said.

The coalition said it does not understand what has taken the province this long.

"Sorry doesn't cut it. My child needs more than sorry. My child needs therapy," said Chapman, whose son Blake recently became too old to receive publicly funded therapy.

"He needs help. Sorry is not going to give me peace of mind and it's not going to help him."

They are hoping other parents will join them to pressure the province to act. 

• Experts worried Quebec may opt to fund cheaper, less intensive autism therapy