Quebec families turn to private autism therapies at staggering cost

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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'sreal names not be used.

• READ MORE:'It was the ultimate betrayal': Mom reacts to video discovery of therapist's 'rough' handling of autistic son
• BACKGROUNDER:What is ABA therapy for autism?

For children diagnosed with autism between two and five years of age, Quebec pays for20 hours a week of intensivebehavioural therapy.

This government-funded therapy is available in public institutions such as the West Montreal Readaptation Centre, but there arelong waiting lists:Jennifer was told Adam mighthave 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 arekey.

Public system inadequate

There are a growing number of children diagnosedwith autism, and thepublic system simply can't keep up with the demand.

Even getting a diagnosis can mean a lengthy wait.

At the Montreal Children's Hospital, more than 340 children are on the listto be evaluateda wait that can take between 12 and 17 months.

One hundredper cent of my salary goes to paying for his therapies.- 'Jennifer,' mother of 4-year-old boy with autism

The wait isn't any shorterwhen it comes to government-paid therapy.

There are 182 children on the waiting list forthe West MontrealReadaptation Centre's services, with an average wait of 14.5months.

The wait is even longer in the north and east end of the island. The regional health agency that serves that territory, theCIUSSS du Centre-Sud-de-l'le-de-Montral, says childrencan 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

Like many families, Jennifer and her husband were forced to turn to private consultants for their sonAdam.

"I went back to work to pay for it," said Jennifer."One hundredper cent of my salary goes to paying for his therapies.''

As Jennifer found out, itcan come at a staggering cost. The bill for intensive, one-on-one therapy can amount tothousands of dollars a month.

Lui has seen families remortgage their homes, take out huge loansor scrape by on the bare minimum in orderto 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 needas 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 clinicand 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 theyhire 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.

Quebec has about 40 board-certified behaviour analysts trained tosupervise 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 protectedis to have behaviour analysts licensed under aprofessional order.

Other provinces and many Americanstates 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 havebeen vetted, both for apolicebackground 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 afterJennifer 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 analystshould inform themimmediately ofhow to file a complaint if they are dissatisfied with theservices 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 sonthat Jennifer became aware she could complain to the board.

Although board-certified behaviour analysts are accountable for the frontline staff they hire to providetherapy, the U.S.-basedboard is tightening up the rules there, too.

Last year, it created a new certification for therapists registered behaviour technicians.

Having that certification isn'tmandatory in Quebec, either, and Lui said to obtain it,therapists would need tohave proper training and basic qualifications. The registered behaviour technicians alsohave to follow a compliance code.

''It's important in a field where you are talking about a vulnerable population,'' said Lui.

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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

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She says many parents have complained to her about the quality of the therapy they are receiving or about being pressured to pay foradditional 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 vulnerablethat 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 departmenthas plans toregulate behavioural analysis therapists inthe private sector.

A spokeswoman for Charlebois said we should wait until the government's action plan on autism is released later this year.

• READ MORE: What is ABA therapy for autism?

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 disabilitiesto provide additional testing and diagnosticservices.

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