After 5 nights in a cage, Quebec man reaches agreement with government

Jonathan Marchand, a 43-year-old with muscular dystrophy, has lived at a long-term care home near Quebec City since 2012, and likens living there to being an inmate in a prison.

Jonathan Marchand, 43, camped out in hopes of discussing CHSLD conditions with premier

Jonathan Marchand, 43, has lived in a long-term care home in Sainte-Anne-de-Beaupré since 2012. (Daniel Coulombe/Radio-Canada)

After five nights camped out in front of the National Assembly, Jonathan Marchand will return to his room in a long-term care home, despite not getting the meeting he requested with Quebec Premier François Legault. 

The 43-year-old with muscular dystrophy has lived at a long-term care home near Quebec City since 2012. He requires a ventilator to breathe.

Marchand had been living in a makeshift cage outside the legislature since last Wednesday, demanding those who are not elderly be allowed to move out of long-term care homes and have private residences adapted, with visits from care staff as needed.

By putting young people in the care homes, known as CHSLDs, he argues they are essentially prevented from being members of society.

On Monday, Marchand claimed a partial victory, as the government promised to set up a working group to look into the issue.

Still, he left slightly disappointed that he didn't get the opportunity to voice his concerns with the premier himself. 

"As long as I'm there, in a CHSLD, I cannot claim victory, but the door is ajar and that is already a plus. I remain completely determined to get out and show them there's an alternative," Marchand said. 

The province's new working group is expected to start meeting as of next week, and will look into the possibility of creating a new "self-directed" personal assistance program for the province. 

The working group will be comprised of representatives from the office of Seniors' and Caregivers' Minister Marguerite Blais, Soulanges MNA Marilyne Picard, and home care experts. 

The group is expected to submit its report by the end of the year. 

Élizabeth Lemay, spokesperson for Blais, said the minister has been communicating with Marchand to try and come up with a solution. 

"Our government fundamentally believes in the importance of further developing home support. We have to allow people with disabilities to live in their home environments if that's what they choose," Lemay said in an email. 

Need for home care urgent in pandemic, doctor says

Jonathan Marchand has been camped out in a makeshift cage outside the National Assembly since Wednesday. (Marc-Andre Turgeon/Radio-Canada)

Marchand likens living in a CHSLD to being an inmate at a prison.

"Everyone must have the right to live on their own and decide who they live with and how they live," he said.

"This must change, by any means necessary."

Dr. Paul Saba, who treats muscular dystrophy patients, is also calling on the government to respond quickly to Marchand's demands, due to the risk of a second wave of COVID-19 this fall.

"People are far more safe at home with the help that they need," said Saba. He said the premier should listen to Marchand's demands to show that he's listening to those who are most vulnerable.

The majority of deaths related to COVID-19 have been in the province's long-term care homes and private seniors' residences.

At the height of the pandemic, residents were not permitted to leave the care homes and no visitors were allowed.

Based on a report by Radio-Canada

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