A group representing parents of severely disabled children in Quebec has approached Health Minister Gaétan Barrette with a solution they say will help them care for their kids at home.

The parents say they provide their children with round-the-clock care, 24/7, and they get little financial support. 

"It's entire nights without sleep, constant force feeding and diapers all her life," said Marilyne Picard, describing the care of her four-year-old daughter Dylane, who has a rare chromosomal illness.

Picard says her family can no longer count on her $40,000 salary because she has to stay home with Dylane.

"It's an enormous financial burden on top of the stress and psychological distress that we have to go through every day," said Anouk Lanouette-Turgeon.

Lanouette-Turgeon cares for her two-year-old daughter Lhassa, who has a neurological disorder and suffers from untreatable epilepsy.

Barette's response encouraging

The group, Parents jusqu'au bout, says parents of severely disabled children get $2,200 per year from the provincial government and $2,000 per year from the federal government.

A number of parents with the group met Barrette Monday. They proposed they be classified as foster parents.

Lhassa, 2

Anouk Lanouette-Turgeon's daughter Lhassa, 2, has a neurological disorder and suffers from untreatable epilepsy. (Anouk Lanouette-Turgeon)

Picard said foster families can receive up to $37,000 per year, in addition to extra compensation for medication and hospital transport.

Lanouette-Turgeon said the extra financial help would remove a weight from her shoulders.

She said she does receive a few hours of help from a caregiver, paid by the CLSC, however, there is no financial aid available to parents who must stay at home to care for a disabled child.

The group says allowing children to remain at home in the care of their families is in line with the government's policy of keeping users of health-care services as close as possible to family.

Parents jusq'au bout say Barrette told them he wanted to get personally involved in the file – a response they found encouraging.

There are an estimated 2,000 families in Quebec caring for a severely disabled child.


  • An earlier version of this story quoted Anouk Lanouette-Turgeon as saying that with some financial help she would be able to hire someone to help care for her child. In fact, the family does receive a few hours of help each week from a caregiver, paid through the CLSC. However, there is no direct aid available for parents who must stay home 24/7 to care for their disabled child.
    Mar 22, 2016 8:35 PM ET