A Quebec father whose daughter lives with severe autism is denouncing the lack of resources available for people in his position.
The single dad says he had to quit his full-time job to care for his 21 year old daughter, Melodie, because she’s now too old to get meaningful help from the government.
Melodie is non-verbal, and taking care of her is a full time job for her father Stephane Leblanc.
“She needs 24/7 care. she cannot do things by herself,” Leblanc told Global News. “She always needs me for everything in her life.”
Growing up, she was always in school or specialized camps, but as soon as she hit 21, services disappeared.
“Everything just stops and suddenly, you’ve got nothing. You’re just like, thrown in the desert,” Leblanc said.
It’s a reality for so many parents, according to autism advocates.
“Unfortunately, across the country it’s a problem,” said Bruce Petherick, advocate at Autism Canada.
Petherick said there are more adults living with autism than children, so funding help only for children is an “old fashioned idea.”
“There’s a lot less support for them after the age of 21. There are some that exist, but they’re harder to come by,” said Sarah Huxley, head of research and development at the Vero and Louis Foundation.
The single dad has been desperately searching for a place Melodie can spend her days, so so he can work full time and support them both. he says everywhere he calls is full, waiting lists – endless.
“I feel like every day is a defeat,” he said. “It’s always, ‘There’s no place, we can put her on a waiting list, but there’s no guarantee for a number of years.’ There’s just nothing. Nothing. Nothing, Nothing.”
He finally found a place she could spend 18 hours per week, an hour’s drive from his home in Montreal. He sold his condo and moved to a mobile home closer to the resource in Pointe-Calumet, and gave up his job working for Montreal public works.
“It was a great job. It was the best job I ever had. I had good pay, pension, and I had to let it go,” he explained.
With Melodie getting six hours of care three days per week, he says he has time to work about 14 hours per week. It’s not nearly enough to provide for both of them.
Melodie only gets $1,200 dollars per month from the government, which covers part of her expenses. Still, Leblanc says his bank account is consistently on the decline, because he wants to care for his daughter. He doesn’t want to put her in a government care home, because he feels he’s the most qualified to meet her needs. He’s also heard too many horror stories of short-staffed facilities and seniors who can’t speak up for themselves getting mistreated.
“In the next year, I’ll probably lose my house, I’ll probably lose my car. I’m afraid I’m going to lose everything,” he said.
Leblanc’s friend has launched an online fundraiser to help the struggling dad.
“He’s pretty much sacrificed his whole life to take care of her, and he doesn’t get all the the help that he deserves,” said his friend and former colleague, Vince Pisano.
Liberal MNA Elisabeth Prass, the official opposition critic for people living with disabilities or autism, says the province is not putting enough money toward services for adults with autism.
“It’s only families who have the financial ability and freedom to be able to seek those services privately who have access to them,” she said.
In a statement, a spokesperson for the social services minister pointed to investments made to help families of disabled people.
“Our government wishes to continue to increase support to people over 21 living with an autism spectrum disorder (ASD), but more generally to all disabled people living with a disability or ASD and their families,” said Lambert Drainville, press attaché for social services minister Lionel Carmant.
He pointed to a recent 50 million dollar commitment to add 500 respite places before 2026.
Leblanc says none of that solves his problem, and that when he talks to the government, he is simply wished good luck.
“You know, good luck doesn’t pay the bills.”
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