Children with special needs in Quebec have the right to attend school until the age of 21. After they graduate, many parents of children with autism claim the services and options for housing and work are next to none. They’re now calling on the Quebec government to increase funding for the ageing population.
“This population is growing and is becoming part of who we are,” Salvatore Guerrera said. “The government needs to do something now. It needs action immediately. It’s urgent. It can’t just stay behind and not respond to anything anymore.”
Vanessa Guerrera, 35, is hearing-impaired, non-verbal and has autism spectrum disorder. Her parents are desperately searching for a job placement or workshop to give her a sense of purpose. She used to work in a warehouse, but lost her job when the new owners took over.
“They can go to work but often the corporations are a bit resistant because of the handicap,” Vanessa’s mother Diane Guerrera said.
Vanessa’s parents have been fighting for more services since she was a child. With one in 68 newborns now diagnosed with autism, they wonder what it will take for the government to do more.
The Quebec government is still working on its autism action plan that’s supposed to increase access to services for the entire lifespan. But, after fighting for more funding for decades, many parents are losing hope.
“There are government-subsidized homes and senior citizen homes for the people that can’t afford it but we don’t have that for autism or intellectual disabilities,” Vanessa’s father Salvatore said.
Waiting lists for residential group homes are at least 10 years long. Many adults with special needs end up in long-term care facilities. But Vanessa’s parents say that’s out of the question for them.
“We didn’t keep our daughter all this time at home and try to integrate her in society for her to end up in a long-term care facility at a young age,” Diane said.
It’s a concern shared by many. Ellis Goldsmith is 18 years old and his father wonders what will come next after he graduates in three years.
“For people who have kids like mine, there’s very little, especially in Montreal,” Ellis’s father Jason said. “The most successful program would be one that keeps building on their skills, on their communication as well.”
The English Montreal School Board’s special needs advisory committee would also like to see more education programs in place for children after the age of 21.
“There’s a huge demand for 21 and over because many parents are forced to quit their jobs and stay home with their adult children,” EMSB parent commissioner for special needs, Joanne Charron, said.
Giant Steps is the only school in the province devoted to students with autism. Administrators try to help guide parents with the transition after graduation, but it’s difficult.
“We’re aware of the existence of long wait lists for a lot of adapted or specialized services so we encourage the parents in being proactive in getting connected early because we know the reality of the wait lists,” Giant Steps School Director Seiun Thomas Henderson said.
The biggest concern for parents is what will happen to their children when they’re no longer around to help.
“I’ve been thinking about that since she’s very little,” Diane said. “How do I prepare her? What’s out there for them?
“We love them. We want the best for them but what’s there right now – it’s not much.”