Quebec eases restrictions to funds for parents of children with severe disabilities

The Quebec government is eliminating a number of barriers that kept parents of children with severe disabilities from gaining access to funds set aside for them.

Parents are entitled to $14,000 annually from the government, but the government found many weren't completing the steps to receive it because of the level of paperwork involved.

"I realized that people weren't using this money. The money wasn't going out," said Social Services Minister Lionel Carmant.

"We learned that this was because many people weren't making the requests, with things being too complicated. You had to send a lot of justifications for amounts that weren't all that significant."

Families used to have to file receipts for even small expenses and there was a cap on how much they could spend on certain categories of services, such as babysitting, respite or domestic help.

From now on, families will be able to use the money available to them as they see fit, for the category they wish in the Family Support Program (FSP). Benefits will also now be paid out four times a year rather than just once.

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"They can do whatever they want with it. They won't have to justify anything," said Soulanges MNA Marilyne Picard.

Picard understands how important this is, having a 12-year-old daughter of her own who has a congenital disease that prevents her from walking and speaking, among other things.

The MNA entered politics to try to convince the government to reduce the burden on families of children with severe disabilities. She says easier access to the financial aid which is indexed and tax-free is a huge help.

"We recognize that [parents'] situations are really complex. It makes a big difference to their lives," Picard said, adding her own daily routine involves regular feedings and diaper changes for her daughter.

Parents of children under 2 can now access funds

As of July 1, parents of children with severe disabilities under the age of two will also now have access to funding, which was not previously the case.

"Permitting it for children under the age of two makes all the difference because that's when the child is the sickest. They're often in hospital and in really bad shape," said Picard.

Since benefits from the Quebec Parental Insurance Plan usually end around the age of one, "parents were left with nothing in the way of financial assistance until age two," she said.

Nathalie Richard, founder of L'toile de Pacho, a self-help network for parents of children with disabilities, said she's happy with the change to the restrictions as she noticed parents of children under two "were the forgotten ones."

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Still, she says the government should be doing more.

Richard, who has a child with disabilities, has repeatedly asked for an increase in the annual financial aid available to parents, calculating that a foster family for these children receives up to $55,000 from the government, compared with parents who choose to keep their child at home.

"A family living with a severely disabled child is truly squeezed. The family's financial situation is often very precarious. Often, the mother stops working. Single mothers also find themselves on welfare. Poverty is present among these parents," she said.

More streamlined system

In addition to easing numerous restrictions, Quebec also recently announced a simplification of administrative procedures for families requiring home care and support services.

Retraite Qubec, which administers the refundable tax credit, will be able to transfer files to health-care institutions.

"We've built an administrative bridge. When parents have to transfer their information to social services, it will be much easier. Otherwise, parents would have to go through the obstacle course again to get all the paperwork. We've eliminated this duplication," said Quebec Family Minister Suzanne Roy.

These announcements stem from the latest government budget, in which Quebec announced $4.4 million to improve financial support for parents of children with disabilities.