Why is it so hard for Quebec families to get the help they need for their autistic children?
When Jennifer’s son Adam was diagnosed with autism two years ago, it thrust her into a world she knew nothing about.
”It’s probably one of the most stressful things you could ever go through as a parent,” said Jennifer, who asked that her and her son’s real names not be used.
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For children diagnosed with autism between two and five years of age, Quebec pays for 20 hours a week of intensive behavioural therapy.
This government-funded therapy is available in public institutions such as the West Montreal Readaptation Centre, but there are long waiting lists: Jennifer was told Adam might have to wait two or three years for a spot.
Under that scenario, the earliest Adam would receive help would be after he turned five.
Not soon enough: Experts say early diagnosis and intervention are key.
Public system inadequate
There are a growing number of children diagnosed with autism, and the public system simply can’t keep up with the demand.
Even getting a diagnosis can mean a lengthy wait.
‘One hundred per cent of my salary goes to paying for his therapies.’
– ‘Jennifer,’ mother of 4-year-old boy with autism
At the Montreal Children’s Hospital, more than 340 children are on the list to be evaluated – a wait that can take between 12 and 17 months.
The wait isn’t any shorter when it comes to government-paid therapy.
There are 182 children on the waiting list for the West Montreal Readaptation Centre’s services, with an average wait of 14.5 months.
The wait is even longer in the north and east end of the island. The regional health agency that serves that territory, the CIUSSS du Centre-Sud-de-l’Île-de-Montréal, says children can wait up to 28 months for government-paid therapy.
There are currently more than 400 children waiting for therapy there.
“In that year or two years, you’re missing a pretty critical window of what we think are the best years to get that therapy in,” said Myra-Jade Lui, the vice-president of the Quebec Association for Behaviour Analysis.
Private therapy adds up
CBC investigative reporter Leah Hendry (right) interviews Adam’s mother Jennifer. CBC has hidden their identities to protect the four-year-old boy, who has autism. (CBC)
Like many families, Jennifer and her husband were forced to turn to private consultants for their son Adam.
“I went back to work to pay for it,” said Jennifer. “One hundred per cent of my salary goes to paying for his therapies.”
As Jennifer found out, it can come at a staggering cost. The bill for intensive, one-on-one therapy can amount to thousands of dollars a month.
Lui has seen families remortgage their homes, take out huge loans or scrape by on the bare minimum in order to pay for their child’s therapy.
”That’s not a situation any of us like,” said Lui. ”But what you can see is, it’s kind of necessary in a province where these needs just aren’t being met fast enough.”
The lack of public services in Quebec has led to an increase in private operators rushing to fill the gap.
Some are genuinely qualified, while others see the crying need as a business opportunity.
”Right now, anybody could open a clinic. Anybody,” said Marc Lanovaz, an autism expert at the University of Montreal.
He’s seen several clinics advertising autism therapy without the certified staff necessary to oversee or supervise the programs.
”You could open a clinic and say you’re doing behaviour analysis,” said Lanovaz.
No mandatory certification in Quebec
Applied behaviour analysis, or ABA therapy, is a well-known treatment for autism.
If parents choose that route, it’s recommended they hire behaviour analysts who are certified by the Behavior Analyst Certification Board, which is based in the U.S.
In Quebec, however, that certification isn’t mandatory.
Université de Montréal autism expert Marc Lanovaz said he’s seen several private clinics advertising autism therapy without the certified staff necessary to oversee or supervise the programs. (CBC)
Quebec has about 40 board-certified behaviour analysts trained to supervise autism therapy programs. They typically oversee a small team of therapists or technicians who deliver the therapy. But Lanovaz says he has seen clinics offering ABA, without certified staff.
The Quebec ABA Association and other certified behaviour analysts are pushing the government to regulate the industry.
‘We have all these guidelines for engineering, for construction workers – and these are kids, and anyone can open a clinic,” said Lanovaz. ”It’s absolutely ridiculous.”
Lanovaz says the easiest way for the Quebec government to ensure parents and children are better protected is to have behaviour analysts licensed under a professional order.
Other provinces and many American states are already moving in that direction.
In British Columbia, the government provides families up to $22,000 per year to assist them in purchasing eligible autism intervention services and therapies.
It also has an approved registry of therapists, which means the therapists have been vetted, both for a police background check and to ensure they meet basic qualifications.
”It’s such a letdown that the province doesn’t make that available for parents here, ” said Jennifer.
No protection for ‘vulnerable population’
Jennifer had hired a board-certified behaviour analyst to work with her son, who in turn assigned a therapist to execute her program.
The relationship ended after Jennifer used a nanny-cam to videotape a session and saw that therapist interacting roughly with Adam.
- Read Jennifer’s story here: Hidden camera reveals ABA therapist interacting ‘roughly’ with autistic 4-year-old boy
According to the certification board, when parents sign a contract with their analyst, that analyst should inform them immediately of how to file a complaint if they are dissatisfied with the services they receive.
Board-certified analysts are also supposed to report any problems that may arise.
It wasn’t until months after the incident with her son that Jennifer became aware she could complain to the board.
Although board-certified behaviour analysts are accountable for the frontline staff they hire to provide therapy, the U.S.-based board is tightening up the rules there, too.
Last year, it created a new certification for therapists – registered behaviour technicians.
Having that certification isn’t mandatory in Quebec, either, and Lui said to obtain it, therapists would need to have proper training and basic qualifications. The registered behaviour technicians also have to follow a compliance code.
”It’s important in a field where you are talking about a vulnerable population,” said Lui.
Read other stories by CBC Investigatives reporter Leah Hendry:
- CBC Montreal Investigates home page
- IVF treatments drop dramatically since Quebec funding cut 6 months ago
She says many parents have complained to her about the quality of the therapy they are receiving or about being pressured to pay for additional services.
Lui says some parents are worried about being disloyal if they try to change therapists.
“We’ve actually had clients both at the government or in the private sector come in and say, ‘Don’t tell my service provider that we’ve come in to see you,'” said Lui, who also runs her own clinic.
She says parents are worried they might have their services cut, which would be in violation of the compliance code, but many parents don’t know that.
“These parents are so vulnerable that they feel these are the only choices they have,” said Lui. “There is definitely a problem with that.”
Government plan coming later in 2016
CBC asked Quebec’s minister responsible for rehabilitation and youth services, Lucie Charlebois, whether her department has plans to regulate behavioural analysis therapists in the private sector.
A spokeswoman for Charlebois said we should wait until the government’s action plan on autism is released later this year.
The ministry said it has already taken steps to reduce wait times.
At the end of 2014, the government signed an agreement with the Miriam Foundation – a non-profit agency that works with people with autism and other intellectual disabilities – to provide additional testing and diagnostic services.
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