Saint-Hubert mom upset son's multiple disabilities don't qualify for extra funding

Saint-Hubert resident Cindy Jean is part of a group of parents that called on the Quebec government to provide more financial support to parents of children with severe disabilities. Quebec complied and Jean applied for the money but was rejected.

After winning a fight to get more money to care for their children, 1 mom says her son was unjustly excluded

Zachary, 11, has, among other challenges, oppositional defiant disorder which leads to regular fits of violence. His mother applied for extra funding to help care for him but was denied. (Shari Okeke/CBC)

Some parents of children with severe mental and physical disabilities say the Quebec government has left them out of a plan to compensate them for the care their children need.

Saint-Hubert resident Cindy Jean is part of a group of parents who call themselves Parents jusqu'au bout. Earlier this year they called on the Quebec government to provide more financial support to parents of children with severe disabilities.

Jean's son Zachary Gallucci is 11 and has been diagnosed with oppositional defiance disorder, autism, obsessive compulsive disorder, anxiety, dyslexia and Tourette syndrome.

After making their case in the media, the government decided to offer more money to those families, and 2,700 parents applied.

But Jean's application was denied. She said she was told it was because Zachary isn't profoundly mentally disabled.

"I was very angry, taken aback, because as we all know autistic children, 99 per cent of the time are very intelligent," she said on CBC Montreal's Daybreak.

Exceptional circumstances only

Jean said the form she filled out was two pages long and didn't ask for much information about Zachary's condition.

She was told the government was using information about Zachary that is already on file, and a nurse who called to follow-up said they had all they needed.

But Jean said she doesn't believe they know enough about her son to be able to make a decision.

A bad day with Zachary, who is five feet one inch tall and weighs 150 pounds, starts from the moment he wakes up, Jean said. When he has anxiety attacks, she sometimes has to call the police to help calm him down.

Frédéric Lizotte, spokesperson for Retraite Québec, the government body that is handling the requests, said they are handled by a group of doctors and that the monetary support is only intended for children in exceptional circumstances.

Jean said she knew not everyone who applied would get money, but she believes the government is being too selective.

Cindy Jean and her husband Gianni Gallucci say the emotional, physical and financial stress of caring for their 11-year-old son has taken a toll on their family life. (Shari Okeke/CBC )

Always hopeful

Cynthia Roy is the head of a new group representing the parents who aren't getting the additional funding.

She said she's now heard about five families who were turned down and expects there will be more.

"What we want is to unite all those families, meet with the premier if we have to, head to the National Assembly with our files," she said.

Lizotte said that parents can to re-submit their applications if they'd like to have them revised, but Jean said the initial process took months.

"Children and families are still waiting for services we don't have, hoping we're going to get accepted, just to have that little extra to help us out, and then getting refused for technicalities, wording, lack of documents they never asked for at the beginning so it really prolongs the process, it's discouraging," she said.

Regardless, she said she will re-apply.

"I'm always hopeful. When it comes to my son I can never give up."