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Making Healthcare Inclusive for People with Disabilities

JULY 2023

Fatima Formuli is graduating from the University of Toronto specializing in Mental Health Studies.

This paper describes the challenges in accessing healthcare for people with disabilities and inspires readers to think critically about how to make our healthcare system truly accessible and equitable for all.

 

Some recommendations for inclusion: we need to foster spaces for sharing and learning so that both people with and without disabilities can collaborate to create change, inclusive structural accessibility– make physical spaces more accessible, challenge the status quo– understand how colonialism and capitalism have worked together to influence which bodies are deemed “functional,” “healthy,” and “normal”, demand equitable and inclusive jobs by challenging existing policies– hybrid working model or flexible hours should be encouraged, acknowledge the effects of COVID-19– the number of Canadians with a disability will grow as the population increases and ages, push governments to allocate funding for specialized community health centres that cater to the needs of changing demographics in both rural and urban areas, and finally people, organizations and governments need to amplify the voices of people with disabilities to influence policies that suit our collective community needs.

AUTHOR

Fatima Formuli

UofMosaic Fellow

Cohort: 2021 - 2023

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UofMosaic is a two-year university and college-level Fellowship that provides meaningful engagement and equips youth with the leadership skills to dismantle prejudice on campuses across Canada and around the world. Learn more about UofMosaic today.

BARRIERS FACED BY PEOPLE WITH DISABILITIES

According to the Accessible Canada Act, 2019, disability is defined as any sort of impairment that prevents an individual from equal participation in society. Disabilities can be visible or invisible, developmental or physical, and temporary or permanent. Some people believe disability is based on a medical diagnosis, while others think it is socially defined. Social limitations of disability occur because of a perceived standard of ‘normal’ or ‘able-bodiedness.’ More recently,

we began exploring disability through the social model of disability allowing us to further define disability as a social construct where the impairment itself is not disabling, but the way society has been organized does not accommodate people with disabilities.

 

One in five Canadians (over 6 million people) live with some sort of disability and this statistic continues to rise each year. Living with a disability has intersectional effects on factors like access to employment, housing, and healthcare. For example, people with disabilities are less likely to be employed because their employer is unable or unwilling to accommodate their needs. Since many people with disabilities are often unemployed due to this prejudice, they cannot afford basic needs such as fresh produce, transportation, and treatment associated with their conditions. This

can often result in poor quality of life and earlier mortality compared to people living without disabilities. Access to healthy food, quality education, and quality healthcare are recognized universal human rights, yet there is still a long way to go to include people with disabilities in mainstream society.

THE IMPACT OF COVID-19

Before the pandemic, people with disabilities experienced difficult living conditions; having access to adequate housing; education; employment and healthcare. As people with disabilities face discrimination in the labour sector, they are less likely to be employed by employers, which in turn also affect the quality of their health and socio-economic positions. COVID-19 has amplified existing inequities in accessing healthcare for people with disabilities. Most healthcare services shifted from in-person to virtual models, and staff shortages created long waitlists for treatment and diagnostic testing. This left an already vulnerable demographic without the ability to meet with doctors as often as they needed to and lowered their sense of physical and mental well-being as they struggled to receive basic healthcare. Furthermore, certain disabilities made people immunocompromised and therefore more susceptible to COVID-19. People with intellectual and developmental disabilities were more likely to be hospitalized and die from COVID-19 compared to the average population. In addition to the physical risk from having more contact with people outside of their social groups (i.e., support workers, personal support workers, congregate care), many people with intellectual and developmental disabilities were also at higher risk of contracting COVID-19 due to public health

information being inaccessible for them to understand. For example, there was limited accessible information written in non-scientific language about vaccine side effects, which made it difficult for people with intellectual disabilities to learn about the vaccine and make an informed decision.

Access to healthcare was not the only way the pandemic affected communities. As people lost their jobs to the pandemic and much work shifted to a virtual workforce, new expenses cut into savings, people needed internet service, a device with a microphone and camera to do video calls, personal protective equipment, grocery delivery, and takeout. For people who were unemployed before COVID-19 due to a disability, things were especially hard when everything shut down. Having a stable source of income was, and still is, a significant marker of well-being because it enables independence, freedom, and choice. It also enables people to invest in their physical and mental well-being such as spending money on entertainment, investing in hobbies, and buying fresh produce to cook healthy food at home. Unfortunately, this is not always the case for people with disabilities as many of them are unemployed (according to the Institute for Work and Health, approximately 795,000 people with disabilities are unemployed) which further affects their ability to save for unforeseen financial hardships. Although government social assistance programs exist, these are insufficient for covering basic expenses. Important to note is that while individuals with

disabilities have been impacted by COVID-19 with respect to access to equitable healthcare and employment, virtual working environments have enabled people with disabilities to work more comfortably within their homes without transportation barriers or sensory overload.

In Ontario, people with disabilities qualify for up to $1,228/month of funding from the government under a program called the Ontario Disability Support Program (ODSP). Critics have pointed out that this amount has not been adjusted to keep up with inflation and has not been increased in years. As the average rent price in Toronto for a 1 bedroom apartment is approximately more than $2,500 and the average cost of living in Toronto is approximately $3,588 (varies according to location– large city versus remote area as well as other expenses, housing, food, transportation, childcare, etc) this means ODSP alone is not sufficient for one person, let alone someone who may be raising a family, receiving post-secondary education, or paying for medical treatments not covered by OHIP. Living wage to survive in Toronto is $25.05/hour, meaning a total take-home monthly income of $4,008 for a fully employed person - ODSP falls very short of that.

Considering the added expenses of the pandemic, having a disability made life even more unaffordable during the pandemic. Unfortunately, living in poverty comes with its own combination of psychological stressors including the need for strict budgeting and having to make tough decisions about whether you can afford to raise a family. While the cost of living continues to rise, a 6.5% increase in ODSP funding does not cover all living expenses. Although advocates were pushing for disability funding before COVID-19, there has been a renewed push for more affordable funding.

THE EFFECTS OF LONG COVID

The population of Canada is aging and growing rapidly due to immigration. Naturally, this means

more people in Canada will need support for their disabilities as they age.

Another report has found that COVID-19 has actually led more people, including young people, to have a long-term

or short-term disability. “Long COVID” and its lingering effects are changing the way we think about disability. Previously, it was believed that disability is something people are born with or develop after a traumatic accident. However, COVID-19 is challenging that narrative as many more people are reporting disabilities because of lingering COVID-19 side effects months to years after exposure, with as many as 1 in 4 people who had COVID-19 now experiencing disability. Researchers warn that countries are not prepared for the influx of COVID-19 long-term disability support and that more research and medical expertise are needed to support this growing population. There needs to be a standardized way to collect data about disability in order to create targeted and effective policies.

RECOMMENDATIONS FOR MAKING HEALTHCARE INCLUSIVE FOR PEOPLE WITH DISABILITIES

This is a short but not exhaustive list of what Canada can do to be more inclusive towards people with disabilities.

•   The healthcare sector can foster spaces for sharing and learning so that people with and without disabilities can work together to create change.

•   Healthcare professionals, organizations and governments can create structural accessibility in order to make physical spaces accessible for people with disabilities.

•   Being critical of the status quo, and thinking about how colonization and history have played a role in the assumptions people have about ability. This means understanding how colonial and capitalist systems work simultaneously to influence how bodies are deemed “normal,” “healthy,” and “functional.”

•   Giving positions to people with disabilities to lead conversations and incorporate lived experiences about building inclusive and accessible physical spaces for people with disabilities. For example, Cathy Birch, Founder and Chair of

R-Path committee (a resident led and driven committee) of Toronto Community Housing Corporation (TCHC), uses her own lived experience to advise TCHC on how to meet the needs of residents living with disabilities. This includes, the

physical environment, communications team, printing services, hiring people with disabilities within TCHC, and improving the physical community spaces– ensuring they are usable, functional and safe.

•   People need to push policymakers to create equitable and inclusive jobs. That might look giving workers an option of working hybrid or with flexible work hours. This also means holding employers accountable for their Duty to Accommodate and to appoint people with disabilities in leadership roles.

•   Society needs to acknowledge that COVID-19 is a debilitating event and that the population of disabled people will grow as the population increases and people live longer.

•   Governments need to fund specialized community health centres in rural and urban areas to support the changing Canadian demographic.

•   People, organizations and governments need to elevate the voices of activists with disabilities and people with lived experience to help create policies that reflect their current needs. We need to be supportive allies and work towards a common goal. For example, in 2010 the Law Commission of Ontario (LCO) had developed a Framework to help make policy, law and practice more effective, justice oriented and accessible (LCO). This included extensive consultations with people with disabilities and organizations who serve this community (LCO). Approximately 100 individuals and 60 representatives of organizations were consulted to help develop a framework that will help evaluate current and new policies, laws and practices that will impact people with disabilities (LCO).

•   Society needs to acknowledge that mental health disabilities are as debilitating as physical disabilities and often coexist with physical disabilities. Invisible disabilities are just as debilitating as physical ones.

While these recommendations are systemic and may take a long duration to implement and turn into action, there are other tangible ways to make change. One example is The Accessible Icon Project which is challenging the way we view disability, from static to dynamic, to reflect the realistic nature of disabilities. As a form of design activism, the

project seeks to foster conversations surrounding the barriers people with disabilities face on a daily basis

(The Accessible Icon Project). It also gives individuals with disabilities a sense of agency in how they decide and navigate the world they live in (The Accessible Icon Project). For example, by changing the original design of the disability symbol, to a design that depicts movement, autonomy and inclusivity, design activists are challenging stereotypical views of what it means to be a person with a physical disability and symbols used to represent them in public spaces.

REFERENCES

“Accessible Canada Act.” Accessed January 1, 2023. https://laws-lois.justice.gc.ca/eng/acts/a-0.6/page-1.html?wbdisable=false

 

Chandler, Justin. “The Cost of Living is Rising. So Why Aren’t Social-Assistance Rates?” Last modified October 29, 2021.

https://www.tvo.org/article/the-cost-of-living-is-rising-so-why-arent-social-assistance-rates

 

Bahk, Jinwook., Kang, Hee-Yeon., and Khang, Young-Ho. “Disability Type-Specific Mortality Patterns and Life expectancy Among Disabled People in South Korea Using 10-year Combined

 

CTV news, 2023

 

Data Between 2008 and 2017.” Preventive Medicine Reports 29 (2022). doi:https://doi.org/10.1016/j.pmedr.2022.101958

Feed Ontario, 2023 https://feedontario.ca/news/statement-on-2023-increase-to-odsp/

Forman-Hoffman, Valerie., Ault, Kimberly., Anderson, Wayne., Weiner, Joshua., Stevens, Alissa., Campbell, Vincent., and Armour, Brian. “Disability Status, Mortality, and Leading Causes of Death in the United States Community Population.” Medical Care 53, no. 4 (2017). doi: 10.1097/MLR.0000000000000321

Gleason, Jonathan., Ross, Wendy., Fossi, Alexander., Blonsky, Heather., Tobias, Jane., and Stephens, Mary. “The Devastating Impact of Covid-19 on Individuals with Intellectual Disabilities in the United States.” NEJM Catalyst Innovations in Care Delivery, (2021). doi: 10.1056/CAT.21.0051

Government of Ontario, “Income Support from ODSP,” Government of Ontario. Government of Ontario, December 12, 2022. Accessed April 21, 2023. https://www.ontario.ca/page/income-support-odsp#:~:text=The%20amount%20you%20can%20receive,you%20are%20eligible%20for%20ODSP%20.

Government of Canada, “From risk to resilience: An Equity Approach to Covid-19.” Government of Canada, Government of Canada, October 27, 2021. Accessed April 4, 2023. https://www.canada.ca/en/public-health/corporate/publications/chief-public-health-officer-reports-state-public-health-canada/from-risk-resilience-equity-approach-covid-19.html.

Government of Ontario, “Working and earning on the Ontario Disability Support Program.” Government of Ontario, Government of Ontario, February 1, 2023. Accessed April 21, 2023. https://www.ontario.ca/page/working-and-earning-ontario-disability-support-program#section-5.

Howard, Jeffrey. “The Benefits of Remote Work for People With Disabilities.” Inclusion Hub. Inclusion Hub, March 22, 2022. Accessed April 21, 2023. https://www.inclusionhub.com/articles/benefits-of-remote-work.

Liew, Christopher. “Average Cost of Living in Canada by Province (2023).” WealthAwesome (blog). December 15, 2022.

https://wealthawesome.com/average-cost-of-living-in-canada/.

 

Morris, Stuart., Fawcett, Gail., Brisebois, Laurent., and Hughes, Jeffrey. “A Demographic, Employment and Income Profile of Canadians with Disabilities Aged 15 Years and Over, 2017.” Last modified November 28, 2018. https://www150.statcan.gc.ca/n1/pub/89-654-x/89-654-x2018002-eng.htm

Numbeo. “Cost of Living in Toronto.” Numbeo, Numbeo. Accessed April 28, 2023. https://www.numbeo.com/cost-of-living/in/Toronto.

Ontario Living Wage, 2023 https://www.ontariolivingwage.ca/2023_living_wage_rates

Pomeroy, Claire. “A Tsunami of Disability Is Coming as a Result of ‘Long COVID’.”Last modified July 6, 2021. https://www.scientificamerican.com/article/a-tsunami-of-disability-is-coming-as-a-result-of-lsquo-long-covid-rsquo/

 

Rajati, Fatemeh,. Ashtarian, Hosein., Salari, Nader,. Ghanbari, Masood., Naghibifar, Zahra,. and Younes Hosseini, Seyed. “Quality of Life Predictors in Physically Disabled People.” Journal of Education and Health Promotion 7, no. 61 (2018). doi: 10.4103/jehp.jehp_115_17

Roberts, Lily., Ives-Rublee, Mia., and Khattar, Rose. “COVID-19 Likely Resulted in 1.2 Million More Disabled People by the End of 2021— Workplaces and Policy Will Need to Adapt.” Last modified February 9, 2022. https://www.americanprogress.org/article/covid-19-likely-resulted-in-1-2-million-more-disabled-people-by-the-end-of-2021-workplaces-and-policy-will-need-to-adapt/

Turcotte, Martin. “Persons with Disabilities and Employment.” Last modified November 27, 2015. https://www150.statcan.gc.ca/n1/pub/75-006-x/2014001/article/14115-eng.htm

Wall, Katherine. “Low Income Among Persons with a Disability in Canada.” Last modified August 11, 2017. https://www150.statcan.gc.ca/n1/pub/75-006-x/2017001/article/54854-eng.htm

MORE INFORMATION

Want to know more about this or other UofMosaic initiatives? Please contact Alexis-Carlota Cochrane at 

ac@mosaicinstitute.ca

This project was produced during the 2-year college and university fellowship, UofMosaic. This program is proudly supported by BMO.

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This publication was produced during the UofMosaic Fellowship.

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