When Chandra Pasma and I first wrote about COVID-19 and workers 10 months ago, we talked about all of the uncertainties with COVID-19. We shared our own illness experience. And we talked about what workers would need in order to weather this pandemic.
A year into this crisis, our families have mostly recovered. My husband still can’t smell most things and Chandra still experiences some minor achiness and chest pain, but otherwise we’re okay. We’re working, living our lives, and patiently waiting for our vaccines.
The third wave is upon us, driven by variants of concern that are hospitalizing entire families, emptying workplaces of workers, and closing schools and child care centres. ICUs are full. Children’s units are being converted to accept adult COVID patients.
Governments in much of Canada tried to create a false sense of balance between fighting the virus and keeping the profit-based economy open. Governments in Atlantic Canada and the North took a zero-COVID approach and have fared much better.
There is much we still don’t know at this stage of the pandemic, but there are some things that we can be more certain about.
We can be certain that the impacts of COVID-19 will be felt for generations to come.
We can be certain that many COVID-19 sufferers will have some form of lasting physical impact, now known as Long Covid and the people as Long Haulers.
We know that more than one in 10 patients who survive the disease, and nearly 80% of those who were hospitalized, will continue to experience symptoms for weeks or months. Many have been sick for months; some for more than a year.
We know that many, especially those who were hospitalized, are reporting neurological events or PTSD symptoms after the fact. For some, it may never completely resolve itself—we are not yet certain.
We can be certain that workplaces, and work, will have to change. As we examine what it means to have large numbers of working-age Canadians suddenly suffering long-term, possibly chronic, illness and injury, we must look to what disability justice advocates have been fighting for all along, only to be ignored by employers, governments and much of civil society.
The need for paid sick leave to support workers is also clearer than ever. The Labour Force Survey shows that workers in unionized workplaces were more likely to take sick days in 2020 than they were in 2019. They are also more likely than their non-unionized counterparts to take sick leave. Sick leave is essential to stopping the spread and to allow workers to rest and recover when they are experiencing symptoms, hopefully so that they can fully recover and return to work.
Emergency sickness benefits have a place during a pandemic, but they are not good enough.
Canada’s federal emergency sick benefits require workers to miss the majority of their work week in order to qualify for support and do not compensate them if they need to stay home for two days to get tested and wait for results.
Most workers cannot afford to miss days of pay, to be compensated at some later date. Every worker needs to know that they can stay home if sick and not see a gap in their wages. Workers need to know that their employers cannot, and will not, enact punitive measures if they take sick days.
We would also argue that this is a clear example of why every worker needs a union.
The experience of Long Covid has also become clearer. It is a condition that can affect every part of the body. For many patients, it is cyclical, meaning they may feel better, only to experience the return of symptoms. Stress and physical exertion tend to result in relapsing or worsening symptoms.
Some Long Haulers are able to work despite their symptoms, but they may need accommodations to enable them to do so. Stories of workers returning to work then relapsing or of workers who need lengthy return-to-work plans because of physical exhaustion are common in Long Covid patient forums.
Fatigue, brain fog, pain, breathlessness, dysautonomia, heart problems, neurological and visual changes, and secondary infections may all interrupt normal work patterns or responsibilities. Workers will need flexibility.
Fatigue, brain fog, pain, breathlessness, dysautonomia, heart problems, neurological and visual changes, and secondary infections may all interrupt normal work patterns or responsibilities. Workers will need flexibility.
Can work be done from home? Can work be done in a different time frame? Can workers’ weeks be structured to allow for periods of rest or refocusing?
Research into Long Covid is still in the early stages and no one knows the long-term prognosis. Care plans are being developed by trial and error; they are slow and cumbersome, as there are too many patients and not enough care providers. Waiting lists for some specialists are months long and growing. Some patients are experiencing improvement in their symptoms after being vaccinated for COVID-19, but no jurisdiction in Canada has prioritized Long Haulers.
Governments need to ensure that employers are required to provide the accommodations and flexibility necessary while we learn and while we continue to deal with uncertainty.
When work isn’t an option
While accommodations will help some COVID-19 Long Haulers get back to work, not everyone can. In fact, some Long Covid patients may never return to work. Some are bedridden and completely debilitated by their symptoms. Others lack the strength and stamina to do physically demanding work or the clarity and mental focus to do knowledge work.
Unfortunately, many of these COVID-19 Long Haulers have fallen into a gaping hole in our social safety net. And they are not alone. Canada’s disability income supports are a byzantine patchwork of federal and provincial programs with differing rules and definitions of disability, making it difficult for persons living with disabilities to even know which programs they might qualify for.
They are based on outdated concepts of disability and don’t serve people with chronic, episodic, or invisible conditions well.
The programs set up doctors as gatekeepers, leaving patients at the mercy of practitioners who don’t acknowledge illness when the tests come back normal. This was a problem long before COVID-19 came along.
Most problematic of all for Covid Long Haulers right now is the fact that there is a very big gap between what is required to qualify for Employment Insurance Sickness Benefits and what is required to qualify for Canada Pension Plan Disability Benefits.
Most problematic of all for Covid Long Haulers right now is the fact that there is a very big gap between what is required to qualify for Employment Insurance Sickness Benefits and what is required to qualify for Canada Pension Plan Disability Benefits.
Having exhausted their 15 weeks of EI Sickness Benefits, many Long Covid patients now have no choice but to spend down their savings and sell off their assets in order to qualify for the below poverty level benefits provided by provincial disability programs. As a result, some patients in Canada are now losing their home or their business, all because they were exposed to a tiny, invisible virus at some point over past year.
The support gap could be filled by workplace disability benefits, except that Long Covid is so new that many patients are being denied by their insurers. They’re being told that they cannot possibly still be suffering the effects of COVID-19 or that it’s impossible they ever had a COVID-19 infection in the first place—the kinds of arguments that some people with disabilities have long been subjected to, even before the pandemic.
Many other workers, self-employed or precarious, have no workplace disability benefits that they can apply for.
Over the long-term, our governments need to re-think and re-build our income support system to better recognize and support every person living with disabilities, in all the complex manifestations that disabilities can take.
In the short-term, it is deeply disappointing that the federal government has refused to extend EI Sickness Benefits and make the Canada Recovery Benefit available to Canadians who are not seeking employment but can present a medical certificate. Both are simple, easy, and elegant solutions that would make a significant difference to hundreds of people.
It is disappointing that the government is failing to understand the urgency of the situation.
I’d like to thank Chandra Pasma, a labour researcher and policy analyst specializing in issues of work and income security, for her assistance with the writing of this trilogy blog on COVID-19 and Long Haulers.
