VANCOUVER (NEWS 1130) — One member of a federal advisory group making sure the government’s COVID-19 response respects the rights and dignity of people with disabilities sees this crisis as an opportunity to make lasting changes that will improve life after the pandemic.
The COVID-19 Disability Advisory Group was struck by the federal minister of disability inclusion on April 10, nearly a month after the World Health Organization declared a pandemic.
Michael Prince, Lansdowne Professor of Social Policy at the University of Victoria, has worked with disability organizations nation-wide.
He is a member of the 12-person committee, which has a mandate to work together until August. He says it exists due to grassroots pressure from people with disabilities, allies, and advocates.
“They weren’t hearing the concerns of Canadians with disabilities being specifically referenced. They were hearing a lot about seniors and other groups in society who were vulnerable or at risk, but not Canadians with disabilities in particular. So some pressure built up, some concerns were expressed and to her credit, Federal Minister Carla Qualtrough recognized that,” Prince explains.
“Often people with disabilities are absent at the table or their voices are not as heard as loudly as others.”
We applaud @CQualtro & offer our full support to the excellent new federal #COVIDdisability advisory team, including BC’s own @princepolity @BCANDS1 @aletmanski along with our national partner @CACL_ACIC @KristaCarrNB & Bonnie Brayton, @DAWNRAFHCanada https://t.co/OE9HObgeJN
— inclusionbc (@InclusionBC) April 10, 2020
About 15 per cent of British Columbians are disabled or will be at some point in their life.
Information about the coronavirus and the government’s response comes fast and furious, and everyone is grappling with how swiftly day-to-day life has changed.
“COVID-19 has turned a lot of people’s lives upside down,” Prince says. “For a lot of people living with disabilities in this country who are already facing challenges around meeting health needs — perhaps they have underlying medical conditions, or rely on care workers, support workers — this hit doubly hard in terms of both losing connections with people who provide everyday support, but also just anxiety as to what was going on and trying to understand it.”
The committee set about making sure the flurry of information coming from all levels of government was accessible and adequate.
“One of the initial issues was just the need for public communication and language that was accessible — plain language — for a lot of Canadians, particularly with cognitive or intellectual disabilities, to be able to properly understand and be able to appreciate what was going on,” Prince says.
“When the Prime Minister or premiers or others were speaking about COVID-19, they weren’t hearing the concerns of Canadians with disabilities being specifically referenced.”
Pandemic reveals, compounds existing healthcare challenges
One of the particularly pressing concerns for people with disabilities is navigating the healthcare system amid the pandemic.
NEWS 1130’s conversation with Prince followed the death of Ariis Knight, a woman with an intellectual disability whose caretakers were not allowed into the hospital to help interpret her complex needs.
Prince says a one-size-fits-all approach banning visitors and limiting how many people can accompany someone seeking medical care doesn’t work.
“For some people, for them to actually successfully navigate through the initial contact perhaps through the emergency department and into care, or into a room, they would need two, perhaps three people to accompany them through that journey,” Prince says.
“There’s challenges facing people with disabilities when it comes to access health care, and visitation rights of family members or care support workers being able to be there with people who may have particularly severe conditions. How do we make sure that their dignity, their well being, is respected while at the same time acknowledging that we’re in the middle of a very serious health pandemic?”
Another issue complicating medical care for people with disabilities is a mistrust of or reluctance to engage with institutions that have historically discriminated against them.
a universal experience – parents and others who are intimate are more than visitors. They should be designated as “essential partners” @yonalunsky @beccapauls @Thomsod @KristaCarrNB https://t.co/dn1RoslRw7
— Al Etmanski (@aletmanski) April 25, 2020
How do we move ahead?
Prince says provincial and federal governments have announced some concrete aid for people with disabilities — such as B.C.’s $300 a month supplement to disability assistance, and federal funding for non-profits that are so crucial to providing community and support.
But emergency measures vary from province to province, and changes are understood to be temporary.
There are loud calls for care workers in the disability realm to work in only one facility, home, or assignment to prevent spread of COVID-19, and while advocates working with the government tell NEWS 1130 they expect changes will come soon, there are challenges to mandating that.
Doug Tennant, the CEO of Semihamoo House Society and UNTI says workers at the facilities he runs mandated staff work in one facility only, weeks ago.
1) In usual times, @SemiahmooHouse deploys staff or asks family members to be with people who have developmental disabilities (PWD) 24/7 when they go to the hospital for illness or injury. #DisabilityRights @InclusionBC @FSIBC @plannedlifetime
— Doug Tennant (@DouglasRTennant) April 26, 2020
Tennant acknowledges how difficult that rule is for staff and some other service providers working under Community Living BC, given already existing shortages.
“How do we move ahead in the way we design our policies and collaborate between federal and provincial governments so some of the responses in a future crisis aren’t so piecemeal?” Prince asks.
“This is a unique set of profound challenges in the healthcare system, and to Canadian society and communities and families. It’s a chance to think about how to get through our human rights perspective, how to ensure the dignity, the protection and safety of people in a way that we perhaps haven’t done before.”
Prince sees the potential for this to be a watershed moment, maybe even prompting an overhaul of the Canada Health Act which he says makes few accommodations for the mentally ill or disabled.
He says Prime Minster Justin Trudeau’s recent mention of people with disabilities during a daily briefing on the COVID-19 response was a symbolic, but significant step from the federal government.
“This is something that Canadians want to hear. They want to be able to watch the prime minister and hear themselves being mentioned by him. They had not heard themselves recognized yet,” Prince says.
“I was delighted last Sunday when the Prime Minister, finally, in one of his press conference daily briefings, specifically talked about Canadians with disabilities.”