Quebec abandons pilot project to take adults with disabilities out of CHSLDs — and blames key advocate

After a key advocate disagreed with plans for a pilot project that was supposed to move adults with disabilities out of CHSLDs, the Quebec government abandoned the project altogether.

'They're not keeping their word': Jonathan Marchand

Jonathan Marchand has muscular dystrophy and has lived in a long-term care home near Quebec City against his will since 2012. (Colin Côté-Paulette/Radio-Canada)

The Quebec government is abandoning a pilot project that was expected to allow some adults with disabilities to move out of CHSLDs, after it says a key activist pushing for the project shot down its proposed plans. 

Last summer, after going through what he thought were the proper channels to get the government to take action, Jonathan Marchand spent five days and five nights in a makeshift cage in front of the National Assembly to demand that those who are not elderly be allowed to move out of long-term care homes and have self-directed care instead. 

Last winter, after numerous negotiations, the government promised to launch a project this summer allowing five adults with disabilities to live at home and manage their own support services.

But after learning this spring that the Ministry of Health and Social Services (MSSS) was planning to create a group home for the five, Marchand rejected the plan. 

"What they proposed to us is nothing new," he said in an interview on Première Heure. "It's already existed for 20 years. It makes no sense." 

'Completely insensitive to our needs' 

Marchand is a 44-year-old entrepreneur with muscular dystrophy. He has lived in a long-term care home in Sainte-Anne-de-Beaupré near Quebec City against his will for nearly a decade and requires round-the-clock help to monitor the ventilator he uses to breathe.

He has been fighting for independence for himself and other young residents since the day he moved in. 

"You've got next to no social life, you cannot have a family, you cannot work, you're basically a sick patient," Marchand said. "You are not a full citizen. So we want the tools to be able to live in the community like everyone else."

Marchand said he met with the government about 20 times over the past few months to explain the details of his demands and identify concrete solutions, "but all they were focused on was detaining us," he said. 

Marchand was camped out in a makeshift cage outside the National Assembly for five days and nights last August. (Marc-Andre Turgeon/Radio-Canada)

He says what the government proposed was simply another form of institutionalization, so he rejected the plans, saying it was the opposite of what he's been campaigning for for years. 

"They're completely insensitive to our needs," he said. 

Then, three weeks ago, Marchand received a letter from the government telling him that the work to carry out the pilot project could no longer continue since "the mandate proposed by the MSSS does not meet your expectations."

"The premier lied to us. They're not keeping their word to work with us and it's not acceptable."

Government vows to improve existing projects

Although it won't carry out the pilot project, the provincial government emphasizes that it is not abandoning the plan to take people with disabilities out of CHSLDs.

In a statement to CBC Montreal, Quebec's minister responsible for seniors, Marguerite Blais, said she believes people with disabilities should be able to live at home for as long as possible, but the government must be fair to everyone and is working to improve existing projects and develop innovative programs. 

The government notes there are alternative homes currently under construction in several regions of Quebec that will meet a large number of needs. 

But that's not what Marchand wants for himself and his community. 

"This would not allow us to choose when we go to bed, when we go to sleep, when we eat and all those things you take for granted. We don't want to live like that anymore," he said. "We want personalized services and it is possible," he said, pointing to systems of the sort that exist in Ontario and B.C.

Meanwhile, PQ MNA Joël Arseneau said "it is unacceptable" that the collaborative project between the group and Quebec ended this way. 

"They had hope their quality of life would improve and now the government wants to move ahead with its plans without responding to the needs of people living with disabilities, who are citizens," he said. 

Despite the setbacks, Marchand said he has great hope in turning the tide for people with disabilities going forward.

"There are many ways that we can continue to have our demands be heard — we are extremely resilient and creative people," Marchand said. "This is just the beginning."

With files from Radio-Canada's Première Heure and Lauren McCallum