02/07/2015 02:38 EST | Updated 04/09/2015 05:59 EDT

Quebec caregivers need more support, mom of disabled girl says

Nearly a quarter of Quebecers will, at some point in their lives, become the primary caregiver for a loved one — a sick child, a parent with Alzheimer's, a spouse with Lou Gehrig's disease.

Marilyne Picard is one of those people.

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

The disability itself is the least of her worries, though. Her three-year-old daughter suffers from frequent seizures and needs constant attention.

"She needs care every minute," Picard said.

Yet she receives only minimal support from the provincial and federal governments and doesn’t get a caregivers’ allowance.

She said Lucie Charlebois, her local MNA and Quebec’s minister responsible for rehabilitation, youth protection and public health, told her there was no way she could get one, either – due to budget cuts.

On top of that, Picard said she has to wait three years to get any kind of caregiver support from her local CLSC. Meanwhile, Dylane’s frequent hospitalizations, feeding tubes and other medical costs are adding up.

"I don’t like to say it like this, but my girl costs $1,400 a month," she said.

Too few options for caregivers

So the St-Lazare, Que. mom started a campaign to get financial support for parents who care for their disabled children full-time.

Other parents joined her cause, and together they are trying to pressure the provincial government to offer more in terms of support for primary caregivers.

Mario Tardif, the coordinator of Quebec’s primary caregivers' association, said people like Picard have too few choices.

He said many long-term primary caregivers without any steady income often end up collecting welfare because of the lack of other forms of support.

Tardif said he will continue to lobby the provincial government to come to the aid of people serving as caregivers to ill and disabled relatives.