Sandi Bell knows how difficult it can be for someone with a disability to book a vaccine appointment through an online portal, or feel confident they'll have a ride home from the clinic afterwards.
The disability advocate in Brantford, Ont., has been calling throughout the pandemic for greater supports for people with disabilities, a group that can be more susceptible to COVID-19 infections and — as new research suggests — more likely to have worse outcomes when hospitalized with the virus.
A study published Monday in the Canadian Medical Association Journal found that adult COVID-19 patients with disabilities had 36 per cent longer hospital stays and a 77 per cent increased risk of readmission within 30 days.
Bell, who has a mobility disability and vision impairment, said it's important to see studies highlighting the challenges that COVID-19 has caused for many people with disabilities.
"There is a definite demand for data, because a lot of people just don't know about the daily barriers," said Bell, a member of the Board of Directors of ARCH Disability Law Centre.
"COVID has been the most isolating situation that one could imagine for people with disabilities."
Researchers at the University of Toronto and Unity Health Toronto looked at 1,279 patients — 22.3 per cent of whom had a recorded disability — who were hospitalized for COVID-19 at seven nearby hospitals from January through November 2020.
They found that patients with traumatic brain injury, intellectual or developmental disabilities, and multiple disabilities had the highest risks for poor COVID-19 outcomes.
The longer hospital stays and increased rates of readmission for people with disabilities persisted even after accounting for age and other factors that might explain differences.
Hilary Brown, a professor at the University of Toronto and one of the study's authors, said people with disabilities are more likely to live in congregate settings and experience poverty, which makes them more vulnerable to COVID-19. Disabilities are also more common in those already considered high-risk for the virus, she added, including older people.
The researchers say consideration for people with disabilities, who make up roughly 20 per cent of the national population, has been largely absent from many of Canada's COVID-19 policies.
Vaccine eligibility has been driven primarily by age and medical comorbidity, they say, and there have been limited accommodations made for patients with disabilities in hospital, including not allowing external essential care partners in as visitors, especially during the first year of the pandemic.
"Despite all that we know about this group being vulnerable to COVID, they really have not been prioritized," Brown said.
Dr. Amol Verma, a clinician-scientist at Unity Health Toronto and study co-author, said he saw "several cases" early in the pandemic in which clinicians couldn't properly communicate with a COVID-19 patient with a disability why they were even in hospital.
Verma said that communication breakdown likely contributed to longer stays.
"But importantly, it also impedes our ability to help people transition back home safely if we can't fully understand what their needs are," he added.
Verma said some readmissions stemmed from complications of COVID-19, including blood clots, kidney injury and delirium. Other patients returned to hospital with treatment-related complications, including bleeding after blood-thinners.
The study's authors say disability-related needs must be included in COVID-19 policy, suggesting better accommodation for patients who need support, training clinicians on the needs and rights of people with disabilities and including disability-related data in COVID-19 surveillance.
Changes to vaccine prioritization and making online booking sites more accessible can also help, they added.
Brown said figures from health database ICES show that booster-dose uptake for adults with developmental disabilities in Ontario is "slightly lower" than that seen in the general population. She said those rates should be higher for a group more vulnerable to the virus.
While some vaccine clinics have been specifically dedicated to people with disabilities, including one Monday at the Metro Toronto Convention Centre, Brown said that needs to happen more regularly.
She added that outside research suggests those with disabilities could be more susceptible to adverse outcomes from breakthrough infections, noting that even if the Omicron variant tends to be more mild than previous strains, that won't be the case for everyone.
"Even as we go through the pandemic and a greater proportion of the population is vaccinated, I think the message stays the same," Brown said. "Regardless of what variant we're seeing, we really need to do more to protect people with disabilities because they're experiencing greater adverse outcomes."
Certain politicians, including Saskatchewan Premier Scott Moe, recently spoke about learning to live with the virus rather than trying to contain it — language that some critics call problematic.
Brown said learning to live amid high rates of COVID-19 transmission puts the onus for personal safety on the individual rather than structural policy.
She said that's often hard to do for people with disabilities, noting some have had to choose between allowing potentially unvaccinated personal care providers into their homes or going without services they need.
"They're worried (about) ... placing their health at risk," she said.
Bell, who also chairs a health standards development committee under the Accessibility for Ontarians with Disabilities Act (AODA), said placing the burden of protection on people with disabilities is a major problem, though not one that's surprising to her.
"I do feel it's ableist, but it's how people view people with disabilities," she said. "(The undertone is), 'Don't bug me, just get on with your life.'"
"If that's what they're thinking, it's going to make the situation worse."
This report by The Canadian Press was first published Jan. 31, 2022.
Melissa Couto Zuber, The Canadian Press