“I think the solution is to get out. When the house is on fire, you get out the house, you don’t stay put.”

That’s what Jonathan Marchand, a resident in a long-term care facility in Quebec, has to say when asked about the predicament facing people with disabilities in long-term care facilities across Canada.

Upwards of 80 per cent of COVID-19 deaths in the country can be traced back to long-term care facilities, according to the National Institute on Aging.

“I haven’t been supported… my request to be able to get out of the long-term care facility with the necessary support has gone unanswered by the government.”

A growing number of those living in these facilities are doing so for no other reason than a lack of community support for disabled people. A 2017 piece in the Toronto Star pointed out that thousands of younger disabled people in Ontario have ended up in seniors’ homes because there’s nowhere else to get long-term care. In places like Saskatchewan, rehabilitation hospitals are often the only places people with complex disabilities are able to live if they don’t have other community support. One expert characterized long-term care facilities as “dumping grounds” for individuals with disabilities.

Marchand is one of those affected by the medicalized model of long-term care. He says he feels left behind by the government’s response to COVID-19.

“I haven’t been supported. I mean, my request to be able to get out of the long-term care facility with the necessary support has gone unanswered by the government,” said Marchand, who is also president of Quebec’s Coop ASSIST, an organization that supports independent living and social inclusion by helping members hire personal assistants. “It’s senseless to me, their current way of doing things.”

Federal support needed

Amanda Vyce is a senior research analyst with the Canadian Union of Public Employees. The union, which represents thousands of healthcare workers across the country, has started a campaign calling for national standards for long-term care.

“Currently across Canada we have a patchwork system of long-term care because long-term care is currently not included in the Canada Health Act as a publicly insured core health service, which means that the provinces design their own legislation and regulation.”

“Some provinces have no legislated minimum hours of care,” says Vyce, pointing to B.C. as an example. “And then other provinces, they do have legislated hours of care, and the hours range currently from 1.9 to 3.8 hours of care. But all those standards fall well below what’s shown in the research as the minimum level that’s required to maintain … if not improve the health status of residents.”

“There’s not enough workers. It’s very, very difficult to work in a long-term care facility. And it’s a dangerous job as well.”

Vyce says federal support is required to be able to increase staffing levels and ensure enough hours of care can be provided on a daily basis to residents. The campaign also calls for adequate and stable funding for long-term care, living wages and security for workers, and the removal of profit from the system.

In Ontario “long-term care workers have engaged in actions to draw attention to some of the very significant problems that the sector is facing … in relation to inadequate access to proper PPE or personal protective equipment, and also to draw attention to the staffing issues that are prevalent in homes that impact quality of care.”

Workers “want to improve their working conditions because they know that by improving their working conditions, they will simultaneously be able to improve the conditions of care for the residents for whom they care,” says Vyce.

Marchand says that he has personal experience with how difficult the labour situation can be.

“In my facility, it’s always been an issue. There’s not enough workers. It’s very, very difficult to work in a long-term care facility. And it’s a dangerous job as well. You know, people get hurt all the time and the working conditions are not good. So, most people quit after maybe a year or two, not many people stay.”

Friction between employees and management is common, he says.

“Most people do that kind of job, they want to help another human being,” he adds. But “when you work in a long-term care facility, everything is timed, you need to do your job quickly. You don’t even have time to talk to the residents.”

Further, he says, the way facilities are operated inhibits relationship building. “You can’t make any kind of friendships with the residents or the patients, and it’s carefully monitored. So, when people talk about creating a humane living environment in the long-term care facility, I think it’s impossible with the [current] model.”

More privatization

COVID-19 has showcased the dismal state of many of Canada’s long-term care homes. In Ontario and Quebec, the military stepped in to fill staffing gaps and reported cases of malnutrition and neglect. Discussions have emerged about moving long-term care under medicare and removing profit from the system.

But in Ontario the Ford government is pushing forward with Bill 175, which critics say weakens public oversight while allowing for further privatization of a sector already under intense strain.

“Currently, Ontario is in the midst of the first wave of the COVID-19 pandemic. The last thing that is needed in home care, community care and hospitals in Ontario is significant destabilization and more privatization,” said the Ontario Health Coalition in a recent statement.

“Everyone’s fighting for their own piece of the pie and largely people with disabilities and seniors are instrumentalized.”

“Given the terrible experience of COVID-19 in long-term care homes and other congregate care settings, and in the for-profit homes in particular, we cannot understand how the government could countenance the expansion of another tier of congregate care without any clarity about the purposes; total permissiveness regarding for-profit privatization; no regulatory, inspections and enforcement system; and no governance regime.”

Marchand says that the movement away from long-term care facilities requires government action that has not yet come. Much like CUPE believes that privatization is at the root of many of the issues in long-term care facilities, he says the community’s concerns come down to intention and money.

“Everyone’s fighting for their own piece of the pie and largely people with disabilities and seniors are instrumentalized. They use us for their own purpose,” he said.

“When it’s election time, they will give you some crumbs and they will pretend to care, but at the end of the day, do they deliver on their promises? Not really. So it’s largely a game and we often have no voice in those exchanges.”

“Everyone is making money off of us. We’re very convenient to them.”