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Parents of autistic children in Quebec struggle for access to health services

Autistic children in Quebec struggle for services
WATCH ABOVE: Charlotte Kuhn, 5, lives with severe autism but isn't able to get access to much-needed speech therapy - something her parents blame on a lack of health services in the province. As Global's Anne Leclair reports, hundreds, and possibly thousands of other families may also be struggling to get help for their autistic children.

Charlotte Kuhn, 5, lives with severe autism, and until recently was on the waiting list for specialized health services.

She is non-verbal and was taken off the list after a four-year wait.

Why?

The family, who is on social assistance, was told she no longer qualifies because she’s too old.

Early Wednesday morning, Charlotte’s family was out at the Saint-Henri Metro station collecting money to help pay for speech therapy.

“It’s insane on so many levels that we have to be out here raising money, that we’re not the only ones, I’m speechless in face – just like my daughter,” Sam Kuhn, Charlotte’s father, told Global News.

Just a handful of people showed up to help, but Kuhn insisted raising awareness is just as important as gathering money.

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READ MORE: EXCLUSIVE: Montreal parents claim autistic daughter denied basic therapy

The toddler’s parents have also set up a GoFundMe page to raise $6,000 to pay for six months of basic speech therapy, which includes an initial assessment and two one-hour sessions per week.

Reaction to Global News’ original exclusive story about Charlotte’s dilemma has been fierce both online and at the National Assembly in Quebec City.

“I think [the government has] to do something because these children, they have to have services and especially before six years old because it matters,” said François Legault, Coalition Avenir Quebec (CAQ) leader.

“Services before six years old are 10 times more efficient.”

The West Montreal Readaptation Centre confirms 246 children with autism spectrum disorder are on their waiting list.

They claim an improvement in diagnosis and not budget cuts are to blame for the wait times.

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Lucie Charlebois, the minister in charge of social services, promises the government’s new action plan will be more than just talk.

“We have to work on it and I want to tell them that I know we’ve got to improve services, we’ve got to do something,” she said.

Speech therapist Victoria Prengel estimates hundreds — perhaps even thousands — of Quebec families are struggling to get proper services for their autistic children.

Prengel said she’s seen first hand how families dealing with autism are struggling to get access to basic service.

“They’re extremely frustrated. They do not understand and they keep getting blocked at every avenue,” she told Global News.

Anna Bisakowski points to a photo of her son, Simon, who lives with autism, Wednesday, October 26, 2016.
Anna Bisakowski points to a photo of her son, Simon, who lives with autism, Wednesday, October 26, 2016. Anne Leclair/Global News

Anna Bisakowski, whose five-year-old son Simon has autism, has been able to afford therapy and said it’s made a world of difference in his life.

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“I feel really bad for families, including my own, that there’s no services, there’s no speech therapy,” she said.

“He has blossomed like a flower, he was non-verbal when he was three and now he’s very verbal and in fact he can’t stop talking,” she told Global News.

Bisakowski pays close to $2,000 a month for private services and has had to quit her job.

“Imagine a family losing one salary because one parent has to take their child everywhere to therapy, so they’re on one salary and they have to pay for all of this — it’s crazy,” she said.

In the meantime, Charlotte’s parents insist the Quebec government needs to understand that children with autism deserve to receive services they’ve been promised, even after the age of five.

rachel.lau@globalnews.ca