St-Lazare mother caring for disabled daughter gets public assistance

Marilyne Picard quit her job after her daughter Dylane was born with a chromosomal illness so rare it doesn't even have a name.

Her three-year-old daughter suffers from frequent seizures and needs constant attention.

Since CBC Montreal first brought you Picard's story in February, the St-Lazare mother is now receiving public assistance.

• Quebec caregivers need more support, mom of disabled girl says

Picard started a campaign a few months ago to get financial support for parents who care for their disabled children full-time.

"I cannot go to work because I'm at the hospital and I'm too busy," Picard said.

Keeping Dylane at home requires costly equipment and renovations.

Picard has been fundraising but told CBC Montreal that this too takes time.

Her parents pitch in, often babysitting her other children, but the retired couple in their 60s worries about the future.

"If I would be 80, it wouldn't be the same for sure. I don't know what goes on 20 years from here," said Andr Picard.

Hired help for 4 hours a week

The Vaudreuil CLSC has begun to pay for Picard to hire help for four hours a week.

Picard said she's grateful, but it's still far less than caregiver services in other parts of Quebec.

"They have twenty hours a week. For a girl with the same condition. But it's a miracle that I have four hours. I'll take this."

Picard joined forces with another mother, who spends all her time caring for a handicapped child, and formed the group ParentsJusqu'au Bout.

"When you have a child like this, you have to forgo a lot of things in your life," said Genevive Dion.

The mothers are calling on the province to do more for caregiver parents, demanding at least as much as foster families who get $30,000 annually to take care of disabled children.

Dion said that's six times more than what she and other mothers in her position get.

"Because it's our children, we don't get any support. It's not fair."

Picard and Dion are calling on Public Health Minister Lucie Charlebois to meet with them to discuss ways to help caregivers.