There are two big stories on either end of the COVID spectrum right now. Both are about line-ups and priorities. Both impact disabled people. And both say so much about who matters.
The first story is about vaccines. Canada has overlooked disabled individuals and their essential caregivers as a priority group in its COVID-19 vaccine distribution plan.
In contrast to other countries which clearly indicate that people with disabilities or certain types of disabilities are high priority, Canada has yet to give this guidance. The only exceptions are British Columbia and Saskatchewan, which both list “adults with very significant developmental disabilities that increase risk” as people who are “clinically extremely vulnerable.”
The second story concerns triage protocols, which have been in the news recently with increasing demand for critical care resources and reduced ICU capacity in Ontario and Québec. When the demand for intensive care exceeds supply, people who become very ill will have to be prioritized for life-saving treatments.
Triage protocols released in the spring were discriminatory toward disabled individuals. Steps were taken in Québec to improve its protocol but changes in Ontario have yet to be made public.
The back of the line
This is not new. People with disabilities have been forgotten, or told to stand near the back of the line for many things prior to and since the start of the pandemic, including accessible information, housing, education, employment, financial support and health care.
In fact, if you read the news, it seems the only time disabled individuals may find their way to the “front of the line” relates to Bill C-7, concerning medical assistance in dying (MAID), discussed in the Senate this week.
In a bold tweet recently, emergency room physician and medical reporter Brian Goldman suggested that it would be more efficient for the health-care system to avoid triaging people with disabilities by prioritizing them instead.
There is truth to this. A United Kingdom-based analysis found that disabled adults in the U.K., representing 17 per cent of the population, accounted for 59 per cent of COVID-19 deaths. If we know that a group is more likely to get ill or do worse when they fall ill, they should be vaccinated sooner.
But I want to dispel the notion that it is something about people with disabilities that puts them at increased risk. We know from research that certain health conditions more common in disabled adults make contracting COVID-19 more deadly. However, there are also common mistakes made in health care that contribute to this problem:
There are attitudes within the health system that lead to discriminatory behaviours when it comes to how we care for people with disabilities. In a recent study based in the United States, four out of five doctors perceived the quality of life of people with severe disabilities as worse than other patients.
Pandemic restrictions and inaccessible health-care information have made health-care navigation for many disabled people even more complicated, especially those less able to manage digital solutions. This means that not everyone can access needed health care in a timely manner.
We recognize symptoms of COVID-19 too late because of communication challenges, because they present differently and because we mis-attribute illness symptoms to a person’s disability (“diagnostic overshadowing”).
Despite federal guidance to the contrary, we prevent essential care partners from being present in hospital to assist with assessing, diagnosing and treating illness, COVID-19 related and otherwise. Not only does this lead to problematic care, it can lead to preventable deaths.
So, while we continue to advocate regarding vaccine prioritization and triage protocols, let’s also:
Ensure disabled people are knowledgeable and empowered to do all they can to prevent getting COVID-19, or any illnesses requiring intensive health care at this time, by giving them the health, financial and social supports they need to stay well.
Adapt protocols in hospital and community so disabled people can be easily tested for COVID-19, and can isolate and be treated. Everyone can play a role in this — patients, caregivers, and importantly, health-care providers and administrators.
Make sure that disabled individuals who require an essential care partner to provide physical, psychological and emotional support are able to have them present in all health-care settings.
Put structures in place to reduce ableism in health care. Health-care providers, it’s time we take a close look at ourselves in terms of our attitudes and behaviour toward disability, call out discrimination when we see it, and take action.
Disabled people matter and this pandemic has only accentuated the sad reality that as a country, we fail to act like this is the case. Whether we are talking about vaccine distribution or triage protocols, we need to work together to make sure they are prioritized while, at the same time, address the issues that put them at risk.
Yona Lunsky receives research funding from the Canadian Institutes of Health Research and the Azrieli Foundation focused on the mental health of people with developmental disabilities and their families.