People with intellectual disabilities and autism are dying of COVID-19 at higher rates than other people in at least two states in the U.S., according to new data collected by NPR.
In Pennsylvania, people with intellectual disabilities and autism are dying at a rate twice as high as other people who contract the virus. In New York, they’re dying at 2.5 times the rate of others.
One in four Canadians — about 25 per cent of the population — has a disability, according to the latest data from Statistics Canada, and experts worry the numbers are similar when it comes to COVID-19 deaths in Canada.
READ MORE: Disability advocates say B.C. woman’s death shows need for clearer COVID-19 policy
“We know that … when you look at the response (to COVID-19) and the (exclusion) of certain populations … people with disabilities is one of those populations,” said Meenu Sikand, executive lead of equity, diversity and inclusion at Holland Bloorview Kids Rehabilitation Hospital in Toronto.
While there isn’t any Canadian data available yet, it would make sense that people with disabilities and autism are disproportionately affected by the virus, according to Valorie Crooks, a professor of health geography at Simon Fraser University who currently holds the Canada Research Chair in Health Service Geographies.
“This is a population that we know experience ongoing systemic challenges in accessing and experiencing preventative care,” Crooks said.
“If we had a group of people that we know have typically been on the margins of having access to preventative margins of healthcare, including how that intersects with the social care system, I think it’s quite logical to expect that this would be a group of people … that has higher rates of COVID-19.”
Even before the COVID-19 outbreak, people with disabilities were facing “significant” challenges every day, March of Dimes Canada president Len Baker previously told Global News. March of Dimes is an organization which provides services for people with disabilities in Canada.
“Those historic barriers become exacerbated during a time such as this pandemic,” he said.
“Now, not only do they have to address the issues that they need to be able to complete their goals and feel connected to the community, but with social distancing and the isolation that the pandemic brings, it causes us concern that many individuals are going to feel even a greater sense of isolation and loneliness during this time,” he said.
U.S. data
Pennsylvania and New York state are two of the only states collecting data about people with intellectual disabilities and autism as it relates to COVID-19 deaths.
In Pennsylvania, the numbers are tallied by the Office of Developmental Programs of the Pennsylvania Department of Human Services.
As of June 2, the data showed 801 confirmed cases and 113 deaths among people with intellectual disabilities and autism. This includes anyone who receives state support while living in group homes, state institutions or their own homes.
READ MORE: Federal panel aims to ensure Canadians with disabilities included in coronavirus response
In New York, NPR calculated the data based on numbers collected by the New York State Office for People with Developmental Disabilities.
As of early June, 2,289 people who receive services from this office were tested for the novel coronavirus and 368 had died.
In Canada, advocates are frustrated with the lack of data collection.
As someone who works with people with disabilities and autism on the front lines, Sikand knows the disabled community is being disproportionately affected by COVID-19 — but Canada isn’t collecting any national data to back this up and drive policy.
Without the data to support her claims, there is less pressure on the government to make a change.
“It’s already three months — almost four — into the pandemic response, and we missed all those opportunities,” Sikand said.
“The government was moving forward with a (plan), trying to make sure that it includes different communities … but our community has been left out of this conversation because there’s no real data.”
‘Ableist lens’
The lived experience of a person with a disability or autism is extremely unique to that person, Sikand said, and the current policies regarding COVID-19 don’t take this into account.
“I think … social distancing and visitation policies were created using an ableist lens,” Sikand said.
She uses the example of Ariis Knight, a 40-year-old woman with cerebral palsy who died alone in a B.C. hospital in April.
READ MORE: Autism and isolation — How coronavirus is affecting kids on the spectrum and their parents
Knight communicated with her family and support workers through her eyes and facial expressions. She was admitted to Peace Arch Hospital in White Rock on April 15 with symptoms of congestion, fever and vomiting but did not have COVID-19.
Her support staff were not permitted access due to restrictions put in place during the pandemic. Not long after being admitted, Knight was put on end-of-life care and died days later.
“She was cut off from the people who understood how she communicated … her support system was not considered,” Sikand said.
“People with disabilities are marginalized because (policy) decisions are being made by people who don’t have disability.”
Inclusive emergency planning
Advocates say people with disabilities are often left out of emergency planning in Canada.
David Lepofsky, who chairs the Accessibility for Ontarians with Disabilities Act Alliance, likened the situation to a fire raging inside of an apartment building complex. People inside are alerted by a fire alarm and speaker that tells them to exit by taking designated stairs illuminated by clearly indicated markers.
A person who is deaf wouldn’t hear the fire alarm. A person in a wheelchair would be trapped inside. And those designated markers would do nothing for someone who can’t see. Unless they receive support, Lepofsky said anyone with disabilities living in the building would likely not survive.
READ MORE: ‘I need help’ — Coronavirus highlights disparities among Canadians with disabilities
Similarly, he said the government has applied a mostly one-size-fits-all approach to COVID-19 measures that offer little support to the country’s disabled.
“It’s because of their disability and it’s because no one planned for them in the emergency,” he previously told Global News.
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Often, Canadians with more severe disabilities will get placed in long-term care facilities, where health officials said more than 79 per cent of COVID-19-related deaths occur. Lepofsky said that poses a danger to those with disabilities as well.
Marielle Hossack, press secretary to the minister of employment, workforce development and disability inclusion, said in a statement to Global News that the federal government has increased human resources for support services for Canadians with disabilities over the phone and online.
The federal government has also established the COVID-19 Disability Advisory Group, which is comprised of experts in disability inclusion that provide advice on “real-time live experiences of persons with disabilities.”
Hossack wrote that the group discusses disability-specific issues, challenges and systemic gaps as well as strategies, measures and steps to be taken.
But some advocates don’t think that’s enough.
“A lot of the measures that have been made to prepare for this pandemic have been done to think about the greatest number of people,” Karine Myrgianie Jean-François, director of operations at DisAbled Women’s Network Canada, previously told Global News.
READ MORE: B.C. woman with disability dies alone in hospital due to COVID-19 visitor restrictions
“(This) often means that we forget about people who are more marginalized and people who have a disability.”
Jean-François said that includes the Canada Emergency Response Benefit (CERB).
Currently, 70 per cent of Canadians eligible for the disability tax credit will receive the enhanced GST/HST benefit based on their income levels due to COVID-19, but that may not add up to much for Canadians with disabilities who may also need to hire food deliveries or in-house care, or those who would be deemed ineligible for the aid because they’re unable to work.
The money “doesn’t go as far as it used to,” she said.
“We’re not all equal under COVID-19.”
Possible solutions
Sikand wants to see the COVID-19 Disability Advisory Group actually consult with people with disabilities and autism.
“I’m a person with disability myself. (So far), I don’t know the impact of that committee on my quality of life and the response from the government,” Sikand said.
“Nothing about us without us.”
She also thinks policy needs to be created through the lenses of both disability and race.
“The disabled racialized community are even further on that marginalized side,” she said. “Unless we have them included in the planning process going forward, people will be harmed.”
Crooks agrees — change needs to be “community-driven and user-defined.”
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“Changes can be difficult to implement overnight, and (they) require support,” Crooks said. “That’s why our most important first step is to actually look at what’s happening and to talk to people who are affected.
“We need to actually hear solutions coming from all these people who are part of the care networks of individuals, including individuals themselves.”
Sikand says it’s urgent that these changes take place now before something like another COVID-19 outbreak happens again.
“We know this is not the first or the last pandemic we’ll see,” she said.
Questions about COVID-19? Here are some things you need to know:
Symptoms can include fever, cough and difficulty breathing — very similar to a cold or flu. Some people can develop a more severe illness. People most at risk of this include older adults and people with severe chronic medical conditions like heart, lung or kidney disease. If you develop symptoms, contact public health authorities.
To prevent the virus from spreading, experts recommend frequent handwashing and coughing into your sleeve. They also recommend minimizing contact with others, staying home as much as possible and maintaining a distance of two metres from other people if you go out. In situations where you can’t keep a safe distance from others, public health officials recommend the use of a non-medical face mask or covering to prevent spreading the respiratory droplets that can carry the virus.
In situations where you can’t keep a safe distance from others, public health officials recommend the use of a non-medical face mask or covering to prevent spreading the respiratory droplets that can carry the virus.
For full COVID-19 coverage from Global News, click here.
— With files from Global News’ Emerald Bensadoun and the Canadian Press
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