Quebec parents of severely disabled children plead for more financial help

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

The parents say they providetheir children withround-the-clock care, 24/7,and they get little financial support.

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"It's entire nights without sleep, constant force feeding and diapers all her life," saidMarilynePicard, describing thecare ofher four-year-old daughterDylane, 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-Turgeoncares for her two-year-old daughterLhassa, 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 governmentand $2,000 per year from the federal government.

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

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 helpwould remove a weight from her shoulders.

She said she does receive a few hours of help from a caregiver, paid by theCLSC, 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 familiesis in line with the government's policy of keepingusers of health-care services as close as possible to family.

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

There are an estimated2,000 families in Quebec caring fora severely disabled child.