CBC Investigates

Lachute mother fights back after Quebec turns down stipend for autistic son

Tina Chapman is appealing to Quebec's administrative tribunal to challenge a government decision denying her six-year-old son, who has autism, special funding that would pay for the therapy he needs.

Tina Chapman is 1 of 100s of parents denied extra funding to help care for their severely disabled children

Tina Chapman is asking Quebec's administrative tribunal to overturn Retraite Québec's decision to deny her son, Blake, who has autism, an extra allowance that would help pay for his therapy. (Submitted by Tina Chapman)

Tina Chapman's sole goal this summer was getting her son Blake back on track after his difficult year in kindergarten.

It's meant early morning treks every week to Montreal from their home in Lachute, Que., 85 kilometres away, so the six-year-old can get therapy for his autism.

They also go to Laval once a month, where he receives occupational therapy for dyspraxia, a developmental disorder that affects his co-ordination.

For now, a private donor and a charity cover those costs, but Chapman says more money is needed to get Blake all the help he needs.

She thought she'd found the answer last year, when the Quebec government announced it would offer parents a special supplement to help care for a child with severe disabilities or a serious illness. 

Blake, left, was diagnosed with autism, dyspraxia, a sensory processing disorder and a severe speech delay, but Retraite Québec doesn't believe his level of impairment qualifies him for an extra supplement. (Submitted by Tina Chapman)

Chapman planned on using the money — about $11,000 a year — to help pay for additional therapy.

Her application was turned down.

Astonished, Chapman appealed that decision. To her dismay, it was rejected again.

54 per cent rejection rate

Chapman is one of many parents who had their application rejected.

Since the program started, Rétraite Québec has received nearly 3,900 applications. 

Of the nearly 3,400 applications evaluated so far, 54 per cent have been rejected.

In a letter explaining its decision, Retraite Québec, the ministry responsible for disability payments, said while it doesn't deny Blake has a disability, it doesn't consider his impairment severe enough to warrant the extra funding.

Chapman was shocked.

In addition to autism and dyspraxia, Blake has a severe speech delay and a sensory processing disorder, and he suffers from anxiety.

After his publicly funded therapy for autism was cut off when he started school last year, Blake went into a tailspin. He now has to repeat kindergarten. (Submitted by Tina Chapman)

"With Blake, everything just bombards him," said Chapman. "It's sights, sounds, smells, people being too close to him. He can't handle it. It gets him very, very anxious, and he acts out."

Despite having a one-on-one aide at school, Blake was only able to attend half-days at kindergarten last year.

Frequent meltdowns meant he spent most of that time outside the classroom.

If Blake couldn't be consoled, Chapman often had to pick him up early, making it impossible for the single mother to work.

"How much worse does it need to be?" said Chapman, who has hired a legal aid lawyer to appeal the decision to the province's administrative tribunal — the court of last resort for conflicts of this nature.

Too restrictive?

The Quebec government first announced the supplement for disabled children with exceptional care needs in spring 2016.

With it, came a projected budget of $10 million a year.

To be eligible, a child must already be getting the basic supplement for disabled children, which gives parents $190 a month.

A team of physicians evaluates each application, but the assessment isn't based solely on a diagnosis of a physical or mental impairment.

To qualify, the child's ability to feed, wash, move, communicate or go to school must be severely limited or absent.

Electra Dalamagas, who is in charge of family intervention at an advocacy group for people with autism, Autisme Montreal, has spoken to many frustrated parents who applied for the supplement.

"There has to be so many severe limitations on top of the diagnoses, and they have to have the paperwork to support all of this," said Dalamagas. "A lot of parents got stuck in the paperwork."

Autisme Montreal's Electra Dalamagas says many parents got so bogged down by the paperwork, they gave up applying for extra funding to care for their disabled child. (CBC)

Few people appeal: to date, only 252 people have asked for their case to be reviewed.

Chapman is one of just five cases that have gone above Rétraite Québec and appealed to Quebec's administrative tribunal.

Dalamagas says many parents simply gave up.

"You wear people down," said Dalamagas. "Eventually people give up chasing after reports and trying to make sense of things when you haven't slept for three nights."

"You have to make supper, you have to remember to wash at some point. You're talking survival mode for a lot of these families."

A spokesperson for Rétraite Québec says the agency is aware of how difficult it can be for parents to get access to all the documents requested. 

It now asks for parental consent, so the government can access the child's health and education records directly. However, of the nearly 500 applications still waiting to be processed, in most cases, Rétraite Québec is still awaiting documents in order to make a decision.

Continuing the fight

Chapman says she's determined to keep fighting for the extra supplement.

Blake's school, psychiatrist and therapists all insist that her son needs substantial support in all areas of his life.

In the letters they wrote to the government on his behalf, they described Blake's situation as urgent.

Blake, who has autism, requires extensive therapy, which his mother hoped she could pay for by drawing on the extra supplement for children with serious disabilities. (Submitted by Tina Chapman)

Blake has to repeat kindergarten this year, something Chapman believes could have been avoided if the government had given her the supplement.

She's convinced of that because prior to kindergarten, Blake was doing well.

Before he started school, he received publicly funded therapy called applied behaviour analysis — or ABA — three times a week.

His mom says ABA helped him learn to speak, communicate and socialize, and he was able to attend two full days of pre-kindergarten a week with few problems.

But in Quebec, once children with autism start regular school, they no longer qualify for government funding. 

Without the ABA therapy, Blake went into a tailspin.

Tina Chapman is terrified Blake could regress if he loses the therapy he's getting now. She says he needs long-term, stable funding. (Submitted by Tina Chapman)

Desperate, Chapman went public with Blake's story last winter.

A private donor and charity then stepped up to help. This summer, he started making progress again, but Chapman knows she can't rely on those funds forever.

She says Blake needs long-term, stable funding that will allow him to get more therapy. 

She's terrified of what could happen if he loses what he's getting now.

"Chances are he'll lose all these skills again, and I'll be back at square one," said Chapman. "Basically I lose him, and I have to watch him go away right before my eyes."

She believes continuing the appeal is her only option.

Late last week, Chapman's legal aid lawyer told her Retraite Québec has offered to try to reach a settlement with her through mediation.

She said she's open to seeing what they have to offer but won't settle for less than what she believes Blake is entitled to.

"If I can get this battle won, it could open the door for a lot of other families that were denied," said Chapman.

About the Author

Leah Hendry

Leah Hendry is a TV, radio and online journalist with CBC Montreal Investigates.