White Coat, Black Art

People with disabilities left out of the conversation about coping with COVID, advocates say

Although the virus poses higher-than-average risk to people living with disabilities, they say they’ve largely been left out of the conversation on how to cope during the pandemic, and critically, from ongoing financial support as well.

'Like having a ticket to poverty,' advocate for people with disabilities says

The pandemic has changed France Rochon's way of life. Born with a rare type of dwarfism, and diagnosed five years ago with pulmonary hypertension, she says she's been 'cooped up' in her apartment since March 12. (Submitted by France Rochon)

France Rochon was born with a rare type of dwarfism, and was diagnosed five years ago with pulmonary hypertension, a form of high blood pressure that affects the heart and lungs.

Before the COVID-19 crisis, neither of these conditions got in the way of the Montreal woman having a full and enjoyable life.

Rochon, now in her 40s, is dependent on personal support workers (PSW) for daily activities, such as bathing and cooking. But her oxygen tank is mobile and the self-described extrovert takes it in her motorized wheelchair when she goes grocery shopping, sits in a cafe or goes to see a movie.

The pandemic has changed all of that. 

Before the COVID-19 crisis, Rochon was able to take her mobile oxygen tank and motorized wheelchair to shop for groceries and enjoy meals at restaurants. (Submitted by France Rochon)

"I've been cooped up in my apartment since March 12 and I've been out of my apartment maybe three times," Rochon told White Coat, Black Art host Dr. Brian Goldman.

Although the virus poses higher-than-average risk to Rochon, she and others living with disabilities say they've largely been left out of the conversation on how to cope during the pandemic.

Last month, more than 60 organizations, including the Rick Hansen Foundation and the Canadian Autism Spectrum Disorder Alliance, signed a letter asking the federal government for a dedicated financial assistance package to help people with disabilities through the crisis.

On Friday, Prime Minister Justin Trudeau announced that Canadians with disabilities will receive a one-time payment of up to $600 to help offset the higher costs of living during the pandemic.

But people with disabilities say the past three months without any extra support have been difficult.

Managing COVID-19 risk

The COVID crisis has disrupted care routines for people with disabilities — particularly with regard to PSWs, sometimes called attendants.

"A lot of us lost our attendants because, for one, they were afraid to pass on the virus. There's a big responsibility that comes with helping people like us at home," Rochon said.

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Many PSWs work for more than one home care client, heightening the risk of spreading infection.

But there's also risk to the caregivers.

For at least five years, Rochon was assisted both mornings and evenings by a woman who is in her mid-70s. 

"So when they started saying that people who were 70-plus needed to stay home in order to protect themselves, I decided well, OK, this lady needs to stay home. I don't want to put her in jeopardy." 

Although finding a caregiver is difficult in the best of times given the low wages, said Rochon, she was able to hire someone new. But managing risk was still an issue.

"I couldn't understand why the nurses that were coming to my house didn't have masks. So I wrote to my government. I wrote to the Minister of Health," said Rochon. Eventually, the organization that coordinates home care nurses provided 10 masks.

Logistical and financial burdens

Author and activist Al Etmanski, co-founder of Planned Lifetime Advocacy Network, said Rochon's experience is just one example of the many ways people with disabilities have been left scrambling during the pandemic. 

"The fundamental worry is how well people can maintain their health where they live, and that is both an economic issue, it's a staffing issue and it's an access to supplies issue."

Al Etmanski has been advocating for the rights of people with disabilities since his daughter, Elizabeth, was born with Down syndrome. (Rebecca Pauls)

Etmanski has been advocating for the rights of people with disabilities since his daughter, Elizabeth, was born with Down syndrome in 1978, and co-chairs an advisory council to Minister of Employment, Workforce Development and Disability Inclusion Carla Qualtrough.

"It's very tough with the extraordinary costs associated with this pandemic," he told Goldman. "Accessing PPEs is not easy. They're in short supply, and you end up having to pay a whole lot more. Accessing sterile catheters and the like, when they're in short supply, are issues. Having to supplement the wages of your attendants [so they don't leave for better paying work] is an issue."

Shopping for food and other essentials, or hiring other people to do so, are logistical and financial burdens for people with disabilities, too, he said.
 
"It's like having a ticket to poverty because of the extra costs."

The federal government has established the Canada Emergency Response Benefit (CERB) to replace wages lost due to the crisis, wage subsidies and commercial rent assistance to help businesses, financial assistance for students, and a host of other industry-specific programs to prop up the economy.

Yet there's been no federal program to help the vast majority of people with disabilities who don't qualify for CERB, said Etmanski.

"Overall the government's response has been disappointingly slow."

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People with disabilities who rely on personal support workers have had to turn to other sources of support during the pandemic — and some PSWs say they worry about the long-term impact on the healthcare system. The CBC’s Omar Dabaghi-Pacheco reports. 2:17

Responding to Friday's announcement of the one-time payment — plus additional funds set aside for workplace accessibility projects — Etmanski said he is "pleased with this recognition of the extraordinary costs incurred by people with disabilities during the pandemic."

But, he said, "there is still a lot more work to be done," adding that he hopes provincial and territorial governments will also put poverty experienced by people with disabilities on the agenda. 

Physical disability and isolation 

Physical distancing measures have entirely cut some disabled people off from the world around them.

"For me, personally, I'm reliant on a couple of things. One is, of course, family and friends. But since we're social distancing, you're not often out with other people unless they're in your household," said Elizabeth Mohler, who has had a visual disability since birth.

Elizabeth Mohler is concerned about what will happen to her if she has to go into the hospital, given that patients aren't allowed to to have anyone with them. (Submitted by Elizabeth Mohler)

Mohler, who is pursuing a doctorate at Western University in the field of occupational science exploring how adults with physical disabilities access community services, pays more than $130 a month out of her own pocket for an app that helps her navigate her environment.

How am I going to fill out any paperwork? How am I going to get around if I need assistance?- Elizabeth Mohler on what happens if she has to go to hospital

Her biggest concern right now is what will happen to her if she has to go into the hospital because of COVID-19 or for any other reason, given that patients aren't allowed to have anyone with them.  

"So if I go to the hospital as somebody with vision loss, how am I going to fill out any paperwork? How am I going to get around if I need assistance?"

In Montreal, France Rochon said she is uncertain how much she will benefit from the newly-announced payment. But she says given that the Quebec government has provided her with no additional financial support, she is "happy to see that Mr. Trudeau thought of us."


Written by Brandie Weikle. Produced by Sujata Berry, Arianne Robinson, Jeff Goodes and Dawna Dingwall. Transcipt provided by  Luke Williams Parent. 

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