“If you are disabled, and you are unable to book yourself an appointment, I will help you do that in concert with you,” he wrote. “Reach out if you need.”
Gurza, who has cerebral palsy, said he was motivated to offer his informal services after receiving private messages on social media from other people within the disabled community asking him how he got vaccinated.
“It’s really kind of troubling that disabled people are coming to me, asking me what to do,” he said in an interview. “Shouldn’t it be a lot clearer than it is?”
People with disabilities, whether physical or intellectual, are eligible to be vaccinated in the current phase of the province’s rollout, but disability is not listed among the eligible groups in the province’s online vaccine booking portal. You would have to know that your disability, depending on what it is, puts you into either the “high risk” or “at risk” health conditions category, and then you would be instructed to call your local public health unit, which, depending on where you live, will tell you whether you can actually book an appointment.
“It’s confusing for everybody,” said Wendy Porch, executive director of the Centre for Independent Living in Toronto. Add the usual obstacles faced by people with disabilities and it’s even more difficult, she said.
Porch is the chair of the city of Toronto’s newly formed Accessibility Task Force on COVID-19 Vaccines, which launched last month to try to remove some of the barriers to accessing the vaccine for people with disabilities.
She said people with disabilities have been “left behind” in much of the vaccine planning and one of the goals of the task force is “to make sure that gap doesn’t increase.”
The group quickly made two recommendations after its first meeting. One was to immediately prioritize people with disabilities who rely on daily care or who reside in congregate settings. The second was that the city should work with supportive housing and developmental service agencies to establish mobile clinics and priority days for vaccine bookings for people with disabilities. Since then 23 congregate living sites for people with disabilities have held pop-up vaccine clinics, while about 200 other people were supported to receive their vaccine at a city-run clinic, the city said.
But barriers remain, and include everything from arranging accessible transportation to ensuring care workers are allowed to accompany people when they’re receiving their vaccine.
“Even if we had a province-wide, easy-to-use centralized registration system, many communities and many people would still have barriers,” said Coun. Joe Cressy, who chairs the city’s Board of Health. The goal of the accessibility task force, he said, is to “help us in real time” address those barriers.
“A successful immunization campaign needs to meet residents where they’re at, and it needs to be tailored to every resident’s local circumstance.”
Although there is no Canadian data on the impact of COVID-19 on people with disabilities, research from other countries shows that disability is a risk factor both for contracting COVID and for experiencing more severe effects.
The lack of data has made it difficult to illustrate the risk faced by people with disabilities, Porch said, adding that the province’s collection of race-based data showed how racialized communities were disproportionately impacted, leading to more targeted resources.
“We need a similar kind of leap forward in terms of people with disabilities in the context of this pandemic.”
The city’s Board of Health has formally requested that the province collect data on disability as part of their its collection of information when someone is vaccinated, Cressy said, but the province has yet to formally respond.
The reasons why people with disabilities are at a higher risk are varied and complex, but include the fact that many are unable to physically distance, some are unable to wear masks, and they often rely on care workers — some of whom work with multiple clients in different homes — to be in close contact. Some also have underlying health conditions that make them more vulnerable to more severe outcomes from COVID-19.
Gurza was vaccinated on April 6 at a pop-up clinic at his building. Not having to travel was a huge relief, he said. Before the pop-up clinic was announced he had booked an appointment at St. Michael’s Hospital, but was frustrated to learn that there wouldn’t be anyone there to assist him with removing his coat or lifting the sleeve of his shirt, which he can’t do on his own.
“They said we don’t provide that,” he said. “For anybody with complex disabilities who has attendant care in the home, but not out of the home, going to get a vaccine like that is really inaccessible.”
In March, Ontario’s government announced it would spend $3.7 million to help seniors and people with disabilities travel to their vaccine appointments if transportation was a barrier.
Gurza said it would have been better if some of that money was instead put toward more mobile vaccination sites so people with disabilities didn’t have to travel to get their shot.
“Transportation isn’t the only barrier.”