With 'no end in sight' to COVID-19 lockdown in long-term care homes, 43-year-old wants out

From the moment hemoved into the CHSLD in Sainte-Anne-de-Beaupr in 2012, Jonathan Marchand has wanted to move out. But never has it seemed more pressing than it does right now.

"I don't feel safe at all," said Marchand, 43, who requires round-the-clock help to monitor the ventilator he needs to breathe.

The COVID-19 crisis has underscoredthe limits of the province's long-term care system, he said, and compoundedhis desire to live in his own home.

While there have been no cases reported at the institution where he lives, so far, Marchand said "it's inevitable" it will happen eventually, with more cases, and more deaths, spreading acrossthe province every day.

In the meantime, Quebec'sban on visitsto long-term care homes has meant he and his partner who, in normal times, visit daily haven't seen each other since mid-March.

"Currently, we live in total isolation, extreme isolation," said Marchand. He fears that even as as the government begins lifting restrictions, long-term care homes will be the last ones to go back to the way things were before the pandemic.

"There's no end in sight," Marchand told CBC's Quebec AM.

Lack of assistance is big threat to safety even without COVID-19, says Quebec long-term care resident

4 years ago

Duration 5:08

Quebec long-term care resident Jonathan Marchand, who has muscular dystrophy, says he wants the right to be cared for outside of an institution.

The computer network engineer has muscular dystrophy, butinto his 30s, he was able to live on his own with limited assistance even spending some time working in Australia.

Then a severe case of pneumonia put him inhospital in 2010, andheunderwent a tracheotomy. It was two and a half years before he was released from hospital and into the CHSLD, located 35 kilometres east of Quebec City a place he is unable to call home.

"Living in a long-term care facility is no life," said Marchand."I've got no future nothing to look forward to."

The benefits of community-based care

Marchand has spent years researching other models for community living around the world. He'sparticularly interested in Sweden's,where health-care workers paid by the state go topeople's homes.

Marchand said the cost to Quebec of his full-time care at the CHSLDis $335,000 annually. He estimates itwould cost nearly $80,000 a year less, around $256,000 annually, to payfull-time assistants to meet his health-care needs in his own home.

More important, he would have controlover his own life.

"I need to be able to live like any other Canadian citizen in the community to be able to participate and contribute to society," he said.

Marchand co-founded a co-operative called COOP-Assist, withthe hope that it will becomea resource for people with disabilities, allowing them to recruit their own caregivers and manage their own needs.

In 2019, he was in discussions with the government about launching a pilot project, he said.

"They were going to contact us 'in a timely manner,'"said Marchand.

His co-operative is on hold, for now.

A human rights issue

Lawyer Paul-Claude Brub, who chairs the Canadian Accessibility Standards Development Organization,saidit's been hard to persuade thepresent or past governments to overhaul the existing system.

He said opening the door to paid home care for younger adults would mean acknowledging there is "a systemic problem."

"It's more than just addressing the issue for people with disabilities," said Brub.

"If you are 72 years old, and you can stay at homeand just need services to get out of bed and wash, I'm sure most elderly people would choose [home]," he said.

For Brub, forcing people in circumstances like Marchand'sto live in a place where they don't want to be living "is totally unacceptable" and goes against the Quebec Charter of Rights.

Since some people are able to afford to pay for their own home care, the government's unwillingness to subsidize that service forothers "creates two classes of people with disabilities those who have money, and those who don't."

There are other issues, as well.

Marchandsaid Quebec's Professional Code, which enshrines in law which services each professional order is exclusively allowed to provide, is also an obstacle to any changes in long-term care.

For instance, not all health-care providers have the right to touch a ventilator, making it harder to find a qualified caregiver to look after him in his home.

"The discrimination I face is even coded into the law," said Marchand.

Still, Marchand finds the lack of political will the biggest obstacle.

Aspokesperson for the minister responsible for seniors, Marguerite Blais,referred CBC back to the Health and Social Services Ministry.

In an emailed statement, the ministry said it studiedMarchand's pilot project in 2019 andfound it to be "laudable."

Marchand estimated it would cost $4 million to $8 million to serve 30 to 70 clients, but that would not be "financially sustainable" if it were to be applied to thousands of patients, the ministry said.

"The pilot project is not coherent with the government's priorities, which are to improve assistance for users who require home care," the statement said.

The ministry said it is,however, open to studying other models of care for people with disabilities being developed elsewhere in Ontario, for example.

"This work will continue to evolve as quickly as possible, given the current context," it said.