“We were not anticipated.” That’s how Wendy Porch summarizes health-care access for people with disabilities during Ontario’s COVID-19 response. Porch is the executive director of the Centre for Independent Living Toronto (CILT), a community-based organization that promotes independent living for people with disabilities. Throughout the pandemic, the word “forgotten” has been part of the story far too often.
Porch, who also chairs the City of Toronto’s COVID Vaccine Accessibility Task Force, has been in sprint mode for months, championing better education and access to ensure that disabled people are included in pandemic health care. The CILT team has also spearheaded a program that’s crucial for vaccine access: the Disability Vaccine Outreach Initiative. Through it, disabled people assist their peers in gaining access to vaccines while also educating practitioners about access needs.
The project was created in response to the City of Toronto’s Vaccine Ambassador program that was focused mainly on neighbourhoods. Porch and her colleagues informed the city that there needed to be a similar program for people with disabilities, who live in a variety of neighbourhoods and have specific access concerns. The city agreed and the project, representing a broad range of disabilities, was born.
After receiving science-based education and training, disability group leaders provide webinars to members about the safety of vaccines and appoint vaccine ambassadors from their communities who become points of contact for peers who need assistance with booking, transportation, on-site accessibility and more.
“People with disabilities understand the barriers the community is facing,” says Porch. “They know who is being included in the broader conversation and who may be missing.”
Barriers to vaccine access for disabled people are numerous. Some face barriers in completing online registration or attending electronically booked appointments because their personal care attendants are not available. Transportation can also be an issue with city van transport taking up to two days to reserve, making it difficult to attend a pop-up clinic. At the vaccine centres, those who communicate using assistive technologies like AAC face barriers communicating with health-care workers unfamiliar with it. Blind and low-vision people need sighted guides. ASL interpretation must be available to deaf people. And while there have been some Toronto vaccine clinics directed at people with disabilities, specific “disability” clinics are not enough. All clinics need to be accessible, especially for those who are low income and can’t travel far.
Another significant barrier has been the government’s lack of community-specific data. “The lack of data collection about the experiences of people with disabilities has negatively impacted our communities from the start of the pandemic,” notes Porch. “Throughout the pandemic, we’ve heard repeatedly ‘We are only making evidence-based decisions about prioritization and who’s at risk.’” Since Toronto has not collected meaningful data on people with disabilities, it hasn’t been able to effectively prioritize them for vaccines. “That has a real impact,” says Porch. “The vaccination rollout plan did not include people with disabilities until we (disability rights advocates) pointed it out.”
Tara Kiran, a family physician at St. Michael’s Hospital and Fidani Chair of Improvement and Innovation at the University of Toronto, has been working with patients who face access barriers in vaccine programs. “As family doctors, one of our key roles is care coordination – and right now, that means a lot of time spent trying to help people navigate the confusing vaccine system,” says Kiran. “Sometimes that means booking an appointment on behalf of a patient, other times it means helping to arrange transport or other support to ensure they are able to get to the appointment.”
Kiran is grateful that community volunteers, including platforms like Vaccine Hunters, have revealed gaps in the system. “I’m a doctor who is pretty immersed in the logistics of the vaccine rollout and I’ve found it hard to figure out which of my patients is eligible for a vaccine, where they can get it and how they can book,” she says. “We have too many queues and that means a system that is confusing but also inefficient and inequitable.”
Beyond clinic access, Porch notes that there are issues around critical health communication. For example, while guidelines advised residents to maintain social distancing, they generally did not provide guidance on safety measures for those who have attendants entering their homes to help with activities of daily living. Some CILT members have reported having their personal support workers refused entry into emergency rooms or clinics due to broadly interpreted guidelines, forcing them to forgo medical care. In this and other ways, disabled residents have had to DIY their own safety plans – and sometimes their own care.
“The vaccination rollout plan did not include people with disabilities until we pointed it out.”
We can’t talk about health equity for disabled people without also talking about poverty. According to Statistics Canada, as many as 30 per cent of Canadians with disabilities live in poverty. Disabled people receiving disability supports were devastated when the federal government made only one pandemic-related relief payment – $600 – for those eligible for the Disability Tax credit, many of whom live below the poverty line. Porch describes the one-time cheque as “too little, too late.”
Whether organizing appointments and transit or making sure accessibility needs are addressed at vaccine sites, Disability Vaccine Outreach peer ambassadors have a keen understanding of the barriers that disabled Torontonians face. Beyond their work supporting individuals, ambassadors are also reaching out to vaccine clinic organizers to make lasting accessibility improvements in these spaces through education. By making these spaces universally accessible now, our city will have best practices to refer to when the next crisis arises.
Too often, health policy has been done to people with disabilities instead of being informed and led by the community itself. Disabled people need to be an integral part of public health efforts during the pandemic and beyond. CILT’s vaccine ambassadorship serves an important role in calling upon our city to live up to its vision of equity. Says Porch: “This is the community in action.”
Learn more about the Disability Vaccine Outreach Initiative here.
Learn more about the City of Toronto’s Vaccine Ambassador programs here.