After pushing to get out of a long-term care facility for nearly 10 years, Jonathan Marchand is finally living in his own apartment in Quebec City.
"I'm feeling great," he said. "I can't be thankful enough, because I can now resume my life, restart to have a life," he added.
The 44-year-old has muscular dystrophy and requires a ventilator to breathe. He had been living in long-term care since 2012. The province made an exception that allowed him to move into his own place earlier this year.
Convincing the government to provide funding so he could get the services at home was not an easy journey, said Marchand, who advocates for the rights of people with disabilities. He camped in a makeshift cage outside of the National Assembly for five days, reached out to media organizations and did a lot of advocacy work to get there.
"I had to work for maybe 1,000 hours, I had to have maybe 100 meetings with different officials from the government," he said.
In order to live on his own, Marchand had to sign an agreement with the local health board, the CIUSSS de la Capitale-Nationale. The agreement requires him to hire, train and manage his support staff. He also had to find his own housing.
He receives funding through a government program to pay for 189 hours a week of in-home support services. There is always one or two personal support workers with him to assist him.
"It's been very, very difficult but I managed to do it," he said. He has been living in his two-bedroom unit since Aug. 26.
He is slowly re-adjusting to living independently, he said. "I've been trapped into the system for 10 years," he said. "I need to relearn how to live and I need to expand my horizons and it's not going to happen overnight."
Paving the way
Marchand said he hopes that his case will help others who, like him, want to live independently.
"We proved that there is an alternative to institutionalization for people with disabilities," he said. "Laws have to be modified so that everyone can live in the community."
He said the current system was "biased" in favour of institutions, and called for a change in the funding models of programs for people with disabilities. "Right now, all the money - or most of it - goes towards institutions," he said. "It needs to change."
The Legault government recently abandoned a pilot project that would have allowed some adults with disabilities to move out of long-term care facilities and manage their own support services.
But the health board told Radio-Canada that Marchand's unique situation was a pilot in itself to evaluate what sort of issues come up.
For Marchand, it's a precedent that bodes well. "My goal now is to extend and to make it so that others can get access to the same thing."
Patrick Martin-Ménard, a health lawyer, said Marchand deserves a lot of credit for the work he has done to set up his own staff and manage their schedules, as not everyone who has a disability is capable of doing the same thing.
Having an arrangement similar to Marchand's could be difficult for some patients, he said, adding that the government would have to find additional ways to accompany those who will want to leave their long-term care facilities.
Martin-Ménard said he also thinks the salaries offered by the program would have to be higher to attract enough personal support workers willing to take on the job.
Marchand's employees currently get paid just over $18 per hour, to which a COVID bonus is added, for a total of $20.
Government could send him back
Although Marchand is now able to live and do activities as he pleases, the government still has the capacity to send him back to a long-term care facility if his health worsens or if he doesn't follow the terms of his agreement with the local health board.
Annie Ouellet, a spokesperson for the CIUSSS, told Radio-Canada that this measure was meant as a safety net.
But Marchand sees it differently. "I still have something dangling over me," he said, adding that he didn't feel completely free as a result.
That hasn't discouraged him from continuing to advocate for the right to live independently. "I did set a precedent," he said. "We're going to build on that and create the momentum so that things can change. I'm not giving up," he promised.