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When Gary Fisher became a patient in the Academic Family Health Team (AFHT) at St. Michael’s Hospital, he says his monthly visits caused a lot of frustration.

“I’d always have to ask the registration clerk to speak directly at me because I couldn’t hear them,” says Fisher, who doesn’t have any hearing in his right ear and only hears at about 40 per cent in his left. “It’s frustrating because my care team is supposed to be helping me, not making my visits more difficult.”

Soon, Fisher, who asked not to use his real name, says he got fed up. But then he remembered something his mentor had said.

“He told me, if you’re not part of the solution, you’re a part of the problem,” he said. “So I became a part of the solution.”

Fisher, who’s served as a Patient and Family Partner (PFP) at Unity Health Toronto since 2018, is one of many people behind several of the organization’s accessibility improvements, including the installation of microphones at registration desks and the launch of closed captioning on virtual meetings. Now, he’s one of about 25 members of a new Unity Health committee pursuing equity for people with disabilities.

Established in June 2023, the Equity of Access Committee serves to identify, develop, implement and evaluate programs and services that drive accessibility at Unity Health. The committee’s mandate is to ensure continued compliance with the regulatory requirements as outlined in the Accessibility for Ontarians with Disabilities Act (AODA), coordinate ongoing accessibility efforts and support a culture of anti-ableism across all Unity Health sites.

The committee consists of staff, physicians and patients with lived experience, which positions the committee uniquely to evaluate programs and identify improvements, says Fisher.

“The staff know what’s feasible and can help get things done, while the patients can say hey, this is what I experienced in that clinic or what I think might happen if you implement that program,” he says. “We won’t be able to catch everything but we can hopefully address a huge number of problems before they happen.”

In its first year, the committee is working on several projects, including recommendations for a five-year accessibility plan that moves the organization beyond basic compliance with the AODA requirements.  The current AODA intends to make Ontario fully accessible by 2025 but progress needs to be made to meet this goal.

Proposed activities aim to compensate for the slow progress and include changes to current accessibility training for all Unity Health staff, physicians, learners and leaders; education for hiring panels to ensure an anti-ableist and accessible recruitment process; and improvements to the Unity Health website to make accessibility information easier to find.

The committee is also liaising with clients, visitors, patients and community partners to understand and address accessibility issues and barriers.

“Most organizations say they’re focused on equity and yet they exclude, whether intentionally or unintentionally, efforts to improve accessibility,” says Janet Rodriguez, a committee member, long-time PFP and co-Chair of the Unity Health Patient Family Council. “If you’re not considering people with disability in your efforts to improve equity, you’ll never really achieve equity.”

Partnering with patients to lead their own care

Janet Rodriguez

In 2017, Rodriguez, who has been a patient in the St. Michael’s AFHT since 2014, was invited to join the team’s Social Determinants of Health Committee. There, she crossed paths with Dr. Laurie Green, a family physician in the Department of Family and Community Medicine at St. Michael’s who shares Rodriguez’s interests in accessibility, disability inclusion and social justice.

Every two years, the AFHT issues a call out to its community members for equity-based projects that improve the provision and quality of care for AFHT patients. In 2022, Rodriguez and Green submitted a proposal and were subsequently selected to advance their patient-led project over the next two years.

Called Accessibility for All,the project partners with patients in the AFHT to identify barriers to care. The insights gained from patients will be used to build skills and knowledge required for accessible and inclusive care in the AFHT and then scaled to staff and physicians across Unity Health.

“The Equity of Access Committee is doing important work but things can move slowly at the organizational level,” says Rodriguez. “Clinic-led projects like these complement the work of the committee by identifying and advancing efforts towards equity of access more quickly.”

To gather insight from AFHT patients, Green and Rodriguez, working with Patient and Community Engagement Manager Nassim Vahidi, disseminated email surveys and held focus groups and interview sessions. Over 250 responses were collected, including 110 from people who identified as living with a disability.

Responses captured nine types of barriers, including those related to transportation, such as a lack of accessible parking, and others related to infrastructure, operations and communications, such as inadequate signage directing patients to elevators or accessible washrooms.

With these findings in hand, Green and Rodriguez have been presenting to AFHT staff and assessing which barriers will be prioritized for immediate quality improvement initiatives. They’re also delivering training and participatory sessions on disability to St. Michael’s clinicians and learners completing their residency.  

“There is evidence that many patients with disabilities receive inadequate medical care due to a lack of accommodations and communication,” says Green. “By recording their access needs and improving site accessibility, we can provide more equitable, evidence-based care.  To quote one patient, this would go a long way to ‘showing we are welcome.’”

Disability inclusion as a continuing practice

Dr. Laurie Green

At the core of accessibility work is education. For years, Green has been teaching medical students about models of disability, ableism and disability inclusion – terms and concepts she says have been missing from the medical school curriculum for too long.

“Clinicians want to do the best they can for their patients, not only because it’s the law but because they genuinely care,” she says. “But there’s a real gap and a need to know more. The experience of someone who lives with a disability is different from someone who doesn’t and this isn’t always taught in school.”

Green and Rodriguez’s Accessibility for All project applies an intersectional lens, which considers various factors, including social location – a combination of factors, including gender, race, sexual orientation, social class, age and religion – when addressing patients’ health issues and impairments. Other systems of oppression add layers to the exclusion a disabled person may experience, says Rodriguez.

This is top of mind for members of the Equity of Access Committee, who have woven intersectionality and education through every pillar of the committee’s recommended five-year accessibility plan. This includes education for staff who live with experiences of disabilities, to make sure that they’re familiar with Unity Health’s workplace and recruitment accommodation processes and their rights protections under its harassment and discrimination policy.

These are recommendations that Rodriguez says she’s happy to see. But at the end of the day, she stresses that the biggest lesson for clinicians is to “just ask.”

“I can ask a thousand people with disabilities what they’d like their care team to know about living with a disability and they’ll all say the same thing – just ask me,” she says. “They want their providers to get to know them. To ask them how they want to communicate or about their challenges. The experience of living with a disability is as unique as humans are and we need to stop assuming that it’s all the same.”

When asked about his advice for clinicians, Fisher echoes the same.

“Disability isn’t a problem to be solved, it’s a continuing practice,” he says. “In health and in medicine, time is the most precious commodity. I just want my team to spend time with me. To listen and learn. I want the same from the Equity of Access Committee. I think we’ll get there.”

By: Anna Wassermann

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