Mother blames loss of publicly funded autism therapy for sending 5-year-old into tailspin
Still no new plan for autism services, 1 year after Public Health Minister Lucie Charlebois's promise to act
Every time Tina Chapman sees an incoming call from her son's elementary school, her heart sinks.
The chances are her son Blake, who has autism, is having another crisis.
The calls started almost immediately after Blake started kindergarten last fall.
He's bolted from the classroom to try and run out of the building. He's lashed out by hitting, kicking or yelling. Even a seemingly simple request to open his lunch box can send him into a tailspin.
"We've tried every trick in my arsenal," she said.
Chapman has brought favourite toys from home to try and comfort him.
The school has a plan to help Blake integrate into his classroom, the support of a full-time aide as well as a quiet room he can retreat to. It's not enough.
"He's regressing further and further and further," said Chapman.
She thinks she knows why.
Progress derailed
At first, Blake was excited about starting school.
Last year, he went to pre-kindergarten two full days a week at the same school in Lachute, 75 kilometres northwest of Montreal. He participated in class, and Chapman says he was happy, co-operative and calm.
So what changed?
Chapman is convinced the problems he's having now are linked to losing the publicly funded applied behaviour analysis therapy — or ABA — he was getting three times a week from October 2015 to July 2016.
When he was diagnosed with autism at three, Blake was nonverbal. Chapman put him on a waiting list for publicly funded ABA and, in the interim, raised more than $15,000 to pay for a private therapist.
The intense, one-on-one therapy got him speaking and improved his communication and interpersonal skills.
"He was doing great," Chapman recalls.
But the therapy stopped just before he started kindergarten. Under Quebec's rules, once children with autism start regular school, they no longer qualify for publicly funded therapy.
However, Chapman says without ABA, Blake is lost and struggling to cope.
"It's extremely emotional," said Chapman. "The way he's acting now is like how he acted before he was diagnosed."
Appealing for help
As a single mom, Chapman can't afford private therapy again, so last summer, knowing he'd soon no longer qualify for a publicly supported therapist, she applied for a new Quebec government supplement for disabled children with exceptional needs.
Chapman wanted to use the extra money — about $11,000 a year — to pay for private ABA therapy, but she was turned down.
In a letter explaining the decision, Retraite Québec, the government ministry responsible for disability payments, said it doesn't deny Blake has a disability, but added:
"He does not have impairments causing severe disabilities that prevent him from performing his life habits."
Chapman was floored.
Blake is now only able to spend a total of 15 to 20 minutes in the classroom each day.
"His first report card was blank," said Chapman. "He's not there long enough for the teacher to see everything from him."
His aggressive acting out and tantrums not only hinder his learning but prevent him from playing or socializing with other students.
"How many life habit issues does he need to have before they say, 'Well yes, this child needs extra help?'" asks Chapman.
She feels the government has turned its back on Blake and derailed all the progress he made.
"You can't cut it off at five years old and expect the school system to pick up the slack," said Chapman. "It's irresponsible on their part."
Chapman has asked the government to reconsider its decision.
She's receiving support. Both the school principal and the school board's special education consultant wrote letters on her son's behalf, describing Blake's situation as "urgent."
A consultant brought in to assess Blake appealed for funding to help him access ABA therapy again as well as services to bring his anxiety under control.
"Blake is suffering," the consultant stated bluntly.
Therapy would keep kids out of class, gov't says
Noémie Vanheuverzwijn, a spokeswoman for Public Health Minister Lucie Charlebois, whose department oversees autism services, says one of the reasons free therapy isn't offered after the age of five is because it would keep the child out of the classroom too much.
Some autistic children may require up to 20 hours of intensive therapy a week. But most children with autism who are able to go to public school require much less than that.
As Chapman points out, Blake only needs about six hours of therapy a week, which she thinks is manageable in a school setting. With that support, she's convinced he'd be in the classroom more.
Vanheuverzwijn says while they don't offer therapy, there are other programs for children like Blake. Besides aides to support the student in class, psychologists and speech therapists also visit.
In Blake's case, Chapman says the school gets some guidance from Blake's former public therapy centre. His aide has received an overview of ABA principles, but she's not specifically trained in autism therapy.
Ontario, Alberta offer continued therapy
There is no age cut off in Alberta or Ontario. Children are evaluated and given services based on need.
In Ontario, Blake's ABA therapy would have continued hand-in-hand with the learning he'd get in kindergarten, said Sinthea Chowdhury, a family support coordinator for Autism Ontario.
She's not surprised Blake has struggled without the structure that ABA can provide many children with autism.
"It's heartbreaking," said Chowdhury. "It's exhausting for the family and truly a disadvantage for that child."
Chapman is envious of the support other provinces provide. She's thought about moving but is reluctant to leave her family support system behind.
"Really in the end, I shouldn't have to uproot our life just to get services for my child," said Chapman.
Still no autism plan in place
It's been a year since Quebec's first autism forum, last February, at which the public health minister brought together experts and parents of children with autism to get their feedback and vote on priorities for a new autism treatment plan.
The plan was supposed to be introduced last summer, then it was pushed back to the fall.
Now, Charlebois's office won't set a date, only saying it will be "as soon as possible."
Parents like Chapman say they can't wait.
She's hopeful Quebec will adopt a treatment plan similar to Ontario's.
As it is now, desperate parents have to wait too long and jump through too many hoops to get funding, Chapman says.
"Consult the parents. We are on the front lines, we know what needs to be done."
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