VANCOUVER (NEWS 1130) — People with disabilities and their families say they are baffled by the province’s decision to leave them out of priority groups accessing COVID-19 vaccines given their high-risk for hospitalization and death.
While B.C.’s approach to the issue has been labeled “vague or inadequate” by Ready For My Shot, a parent-led grassroots advocacy group, only the Northwest Territories has clearly stated persons with disabilities (PWD) will be able to access immunization alongside other groups, like those in long-term care and Indigenous people.
How immunocompromised people have not been prioritized is just baffling. Another insult to disabled Canadians, not a big surprise, sadly.
— Derek (@SurlyCripple) March 5, 2021
Mike Waddingham is a co-organizer with the group, and a proud dad. His 17-year-old son, Aaron, has Down syndrome and has faced extreme isolation over the last year.
“Down syndrome has a host of medical conditions that come with it — it’s not just an intellectual disability — one of them is a tendency to have upper respiratory issues. He’s been hospitalized twice with pneumonia,” Waddingham explains.
— Ash Kelly (@AshDKelly) March 5, 2021
He and his wife, Sue Robins, are leading the charge to try to convince health officials to recognize the vulnerable status of people with Down syndrome, and want all disabilities included in policies.
“I would like [the province’s] COVID priorities to use these 14 words: ‘Residents 18 years and older living with disabilities (intellectual or physical) and their caregivers.’ That’s the priority statement that B.C. and other province’s should be adopting,” he says.
He notes the NWT language is clear and similar to international jurisdictions using similar policies. Comparing it to Monday’s vaccine update briefing with Provincial Health Officer Dr. Bonnie Henry, he points out the current plan took an hour to explain and likely still doesn’t make sense to some PWD.
Meanwhile, PWD have been hyper-isolated compared to most of us and have been unable to access a continuity of care, while facing increased expenses and fear of the virus, says Al Etmanski, a national-level advocate who is an expert in the impacts of social isolation.
“You know I don’t want to compare it to solitary confinement but it’s the closest thing I can compare it to. It does have a deleterious effect on your health, on your physical health, certainly on your morale, keeping upbeat,” he says.
And while many of us have adapted to go for physically distanced walks, that’s too risky for many PWD.
“Not everybody has access to technology to get on a Zoom call and all of those kinds of things so it is confined to your home with very limited or no physical contact. It’s excruciating what I hear,” says Etmanski.
He also has a child, Liz, with Down syndrome.
“Through the lens of my daughter and her circle of friends it’s been extremely isolating. Access to the usual people who might help them get where they need to go, and connect with each other, even using buses and the like, all of that has been extremely restrictive,” he explains.
“The isolation compounded with limited financial resources, the extra costs associated with paying someone to get you your groceries, has really, I think magnified the sense of isolation that we’re all feeling,” Etmanski adds.
Last fall, a study involving more than eight-million adults in the United Kingdom concluded people with Down syndrome are likely 10 times more likely to die of COVID-19, should they get sick.
Researchers noted people with Down syndrome are not included in the U.K. or the U.S. Centers for Disease Control and Prevention lists of groups at “increased risk.”
“We estimated a 4-fold increased risk for COVID-19–related hospitalization and a 10-fold increased risk for COVID-19–related death in persons with Down syndrome, a group that is currently not strategically protected. This was after adjustment for cardiovascular and pulmonary diseases and care home residence, which our results suggest explained some but not all of the increased risk,” says the conclusion of the research paper.
On Tuesday, Health Minister Adrian Dix spoke to concerns.
“The office of the PHO … regularly meets with organizations representing people with disabilities including developmental disabilities and are very aware and very focused on the particular challenges faced by these groups,” he said.
He outlines the plan as is, which includes plans for the most severely disabled (those in institutionalized care) to be inoculated during Phase 2.
“Some people who are living with disabilities will be receiving or have received, been prioritized, in the current phase of our immunization plan depending on where they reside. For example people with disabilities in group homes will be in Phase 2, which are ‘vulnerable populations living and working in select congregated settings,” Dix added.
The minister says developmental disabilities are being closely considered as a risk factor.
“Adults with very significant developmental disabilities that increase risk to COVID-19 are prioritized in Phase 3 of the plan under the category ‘People aged 69-16 who are clinically vulnerable’ and will be immunized at the same time as ‘People who are 74-70 years old and that will be in April,” said Dix.
Advocates say it’s not the intellectual difference that puts people more at risk; they want to ensure there’s a clear understanding of the increased tendency for respiratory infections and pneumonia in people with Down syndrome, for example.