Parents of adults with disabilities say CAQ has betrayed them, backpedalling on promise of more support

Parents of adult children with special needs are furious that the CAQ government has broken its electoral promise to give them more financial support to continue to care for their children at home.

The group Parents pour Toujours, Parents Forever, a lobby group for families of people living with severe disabilities, posted an open letter to Premier François Legault on its website Monday demanding the government make good on its commitment.

"They promised financial equity between our families and foster families," said Marie-France Beaudry, the group's founder, who met with Family Minister Mathieu Lacombe in a pre-budget meeting March 8.

"We learned that there is nothing there. There's nothing in the next budget for us, for our families," she said.

The lobby group is primarily pushing for two things: benefits that don't disappear the minute a child with disabilities turns 18, and the same level of financial support that foster families receive when children are placed because parents can no longer care for them at home.

'We're considered cheap labour'

Take the case of Caroline Bernatchez, whose 19-year-old son, Félix, has a rare disease called SPTAN1 which affects only a few dozen people in the world.

Bernatchez starts her days at 6 a.m. She wakes up her son, changes his diaper, washes him, lifts him into his wheelchair, packs his lunch, helps him onto his school bus, then goes back inside to get ready to go to her paid job, at a bank.

When Félix turned 18, the roughly $2,000 she got from the federal and provincial governments to help defray the costs of raising her son was cut by more than half. Now that Félix is an adult, all that comes into the house from the government is his welfare cheque which, for a person unable to work due to disability, amounts to $900 a month.

When Félix turns 21, he will age out of all school programs, and he will be home requiring care around the clock.

"I don't know how to do it. I'll just keep doing it until I [collapse]," Bernatchez said.

She said that if she were to opt to put her son in a government-run institution or a foster home, it would cost the public much more. For example, a foster family caring for a child with disabilities receives just under $45,000 annually.

"We're considered cheap labour," Bernatchez said. "We're taking care of adults for free, whereas in a foster home they're being paid to do the same thing."

Once Félix is home full-time, Bernatchez says either she'll spend what she earns to pay someone else to care for him, or she'll have to quit her job to do it herself.

She says she's in a financial situation that is so precarious, she worries she'll lose her home.

Wooed by CAQ promises

In a letter released during the campaign last September, the CAQ said it would "re-establish equity between aid given to natural families and foster families caring for minors or adults with handicaps."

The pledge followed two years of meetings between the CAQ and Parents Pour Toujours — and repeated commitments of support, Beaudry said.

At the March 8 meeting with the family minister, the group was stunned to learn there is no money in the budget to make good on that promise.

"You are proposing we work with you towards some eventual form of financial support for our families," they said in their open letter. "Mr. Legault, we don't believe it. We have already been down this path with the Liberals and at the end of the process, we were left hanging."

"Your proposal leaves us with a bitter impression of déjà-vu."

Cynthia Lapierre, the family minister's media attaché, said in an emailed statement Tuesday that the government is "sensitive" to the issue and plans to keep its promise.

Lacombe has mandated Retraite-Québec, which is responsible for disability payments, to revise the existing financial support system for parents of children with disabilities, she said.

The family minister said Tuesday that the CAQ government still intends to keep its promise to parents of adult children with disabilities.

"We have four years to fulfil this commitment," Lacombe said.

When pressed on the immediate assistance that these families expected, Lacombe switched gears.

"We will have the budget on Thursday, so we may have great news," he said.

"Our families cannot wait anymore," said Beaudry, whose son André, 26, has spina bifida, heart problems and intellectual disabilities. She cannot work because caring for André is a full-time job.

Parents pour Toujours now wants Health Minister Danielle McCann and Marguerite Blais — the first cabinet minister ever appointed in Quebec with a responsibility for informal caregivers like them — to give them a firm date as to when families will get the financial support they were promised.