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Follow-up Questions re: COVID-19 and Disability in Canada

Question: A recommendation from the Coalition Working Group is to protect the income of persons with disabilities. Many Canadians are facing a loss of income due to COVID-19. In your opinion, what challenges do persons with disabilities face in accessing emergency funding programs, such as the CERB?

From my perspective, there are two general types of challenges disabled Canadians face when accessing emergency programs like CERB. The first cluster consists of physical barriers that prevent application. Programs that rely upon paper application pose a litany of barriers for those with visual impairments and risk exposure in the process of mailing in documentation. At the same time, research indicates that the digital divide disproportionately hits the disabled population , for financial, technical, and cognitive limitations, meaning fully online systems will leave many unable to apply for help. This barrier is compounded by employment programs and libraries, often used for public Internet access, being closed by emergency orders.

This speaks to a broader access challenge that has been exacerbated by COVID-19 and I would strongly recommend that this and future governments take seriously the need to support Internet access for urban and rural disabled people.

While I have not personally heard of people struggling to accessing CERB using adaptive devices, like screen readers or voice-to-text software, web platforms are notoriously difficult to navigate for people with visual impairments as far too many web developers are under-educated or fully unaware of WCAG accessibility guidelines. It is critical that any application programs adhere to the highest level of web accessibility standard (WCAG 2.1 level AAA).

The second cluster of barriers are driven by policy schisms between the federal government, provincial governments and non-governmental organizations providing support for disabled people. In Ontario, there was early confusion about how CERB would function with the Ontario Disability Support Program (ODSP). The Ford government has since determined the CERB will be treated as income, meaning any money received through CERB will be deducted from monthly income supports provided by the province. Although not ideal, because of the additional paperwork of reporting income from one government body to another, this has provided access to those eligible with increased funds without risking medical, dental and vision benefits offered by ODSP. Each province is tackling this question differently, which has added another (potentially unnecessary) layer of “work” for constituency offices to untangle the bureaucracy and additional stress for those waiting to find out whether or not they are risking long term supports by taking the short term benefit.

A bigger challenge is posed for those unable to work and do not have the requisite earnings to qualify for CERB, leaving them to continue subsisting on below-LICO monthly income supports in an environment where food, housing and medical supply costs continue to creep higher while in-home care needs increase. This means that our most vulnerable disabled Canadians, those who are wholly dependent on the government to survive, are being left behind in the short term and could lead to reduced in-home sanitation and food quality. I would strongly encourage the federal government to consider disability support payments as “income” to qualify these individuals for CERB.

Question: Do you think persons with disabilities are more likely to face permanent job losses post-pandemic than the general population? Please explain.

Although not a perfect analogy, looking at the 2008 financial crisis, the working disabled population is likely to be disproportionately hit by the coming economic recession in both the short- and long-term . After the 2008 recession, disability employment rates lagged well behind their nondisabled peers. While research suggested this is driven by a variety of factors, but one anecdotal reason is that disabled people are often hired into front-line, secretarial/desk duties that were deemed non-mission critical during the crisis and, when rehiring these positions, were pushed out by nondisabled applications with more experience and/or education. Worse still, the disabled population bore the brunt of austerity measures following the crisis – something that could happen once again without careful planning.

Given the physical workplace impacts now and in the foreseeable future, it stands to reason that we will see a similar trend in the wake of this recession. Further, in my anecdotal experience, employers regularly look at me as an “expensive” employee who will require costly adaptive devices and renovations to physical spaces to be employed—this anxiety will surely be amplified, leaving disabled employees on the outside looking in, as profit margins shrink and businesses tighten belts over the next few years to weather consumer uncertainty.

While COVID-19 poses a horrifying bodily threat in the here and now, I am deeply concerned that the long-term economic costs for the disabled population could decimate recent employment gains brought on by provincial legislative changes (like the AODA or BC Accessibility Act) and increased access to post-secondary education.

Question: The federal government transfers monies to the provinces and territories through the Canada Health Transfer (CHT) and the Canada Social Transfer (CST). In British Columbia, the CHT and CST in 2020-2021 is projected to be around $7.6 billion. Recommendation 7 from the Coalition Working Group asks that transfers be earmarked for the healthcare needs of persons with disabilities. Do you think that some of these pre-existing funds should be earmarked for the care of persons with disabilities? Do you think that a new envelope of funding or a new transfer program should be established explicitly for the care of persons with disabilities?

I think this recommendation by the Coalition is an interesting policy solution to limit the rationing of health care supplies and services – if provinces are required to dedicate specific chunks of transfer funds to disabled people specifically it limits provincial governments from restricting medical access to disabled people in times of crisis, as the Ford government in Ontario contemplated in the early days of the pandemic.

At the same time, I am inherently nervous about us versus them paradigms that enforce a hard line between “disabled” and “nondisabled” in part because this division is extremely hard to demarcate. Where would this line be drawn? How do we determine a health care user who is “disabled” versus one that is not? If COVID-19 causes long-term impairments (such as reduced lung function) are not all patients proto-disabled people?

For this reason, I am more supportive of human rights-based directives that outlaws eugenic rationing of care and services along lines of impairment and prognosis. I also would strongly support the establishment of programs to explicitly support disabled people, not just in times of crisis but in perpetuity. Disability is fundamentally experienced differently from coast to coast to coast, in large part because of limited resources, and anything the federal government can do to reduce these impairment effects the better for our country’s oft afterthought citizens.

Question: The Coalition Working Group’s third recommendation concerns the provision of PPE in long-term care homes and the screening of support staff and caregivers. In your opinion, would the provincial and territorial governments be best placed to act on such a recommendation? What do you think the role of the federal government should be in this regard?

This is an important (and, admittedly, a bit unwieldy) question that has some quick fixes and some long-term systemic changes that can be brought to bear. Perhaps a naïve patriot, I believe that Canada works best when all levels of government are working together and leveraging their strengths to solve different parts of the problem. Long Term Care facilities are complex structures guided by reems of policy and funding structures that vary from province-to-province and, as such, on-the-ground solutions are likely best led by provincial and territorial governments as they are simply better informed and better connected to the grassroots deployments of services and support.

At the same time, I think the federal government has a role to play in this problem. To start, the federal government could support provinces in developing best practices on screening and sanitation as new research emerges. Further, the federal government should continue efforts to procure and distribute vital PPE supplies, especially from international vendors, so that provinces are not left negotiating deals in competition with each other. Going forward, the federal government could also play a role in facilitating inter-province supply redistribution as different provinces may need higher volumes of supplies at different times as hot spots pop up periodically. Finally, the federal government could offer increased financial support to Canadian businesses temporarily retooling to produce PPE and sanitizer supplies to reduce dependency on unpredictable international supplies.

Question: The Coalition Working Group recommends establishing a Citizen’s Task Force that includes persons with disabilities, their families and allied organizations to inform a future disability-inclusive emergency response plan. Which body do you think this task force should report to, and how should such a task force interface with the federal government’s COVID-19 Disability Advisory Group (CDAG)? In your opinion, how would a Citizen’s Task Force inform government planning around emergency situations? Please explain.

While I was not a part of the Coalition Working Group, I would argue the formation of the CDAG is a short-term response to this recommendation and is beginning to open channels of communication between the federal government and the disabled population and disability stakeholders.

Post-pandemic, I would strongly support the evolution of CDAG into just this sort of task force to solidify disability-inclusive emergency response plans. The work of this group most logically falls under the purview of the Accessible Canada Act, leaving them to report to the Minister of Employment, Workforce Development and Disability Inclusion. Having said that, something this important and with an urgent need for provincial and territorial coordination could be argued to fit better under the purview of the Minister of Intergovernmental Affairs.

Question: In your opinion, what needs of persons with disabilities are not currently being met by the federal government? Please explain.

I think throughout my opening remarks, question response and within this document I have hit on some of the main priorities that should guide future government intervention, namely:

  • Push forward legislation to outlaw eugenic-inspired medical care and supply rationing in Canada
  • Increased support in accessing PPE, both from an affordability and acquisition perspective
  • Increased support for provincial health care systems to train and hire more support staff to reduce burn out and cross-contamination caused by PSWs working in multiple facilities
  • Increase financial support to those dependent on financial support programs who now struggle with increased care and supply costs
  • Develop financial supports for employers converting workplaces to be accessible, both in terms of physical alteration/construction and the purchase of adaptive devices

References

Cross, Merry. 2013. “Demonised, Impoverished and Now Forced into Isolation: The Fate of Disabled People under Austerity.” Disability & Society 28 (5): 719–23. https://doi.org/10.1080/09687599.2013.808087.

Dobransky, Kerry, and Eszter Hargittai. 2006. “The Disability Divide in Internet Access and Use.” Information, Communication & Society 9 (3): 313–34. https://doi.org/10.1080/13691180600751298.

Dodd, Steven. 2016. “Orientating Disability Studies to Disablist Austerity: Applying Fraser’s Insights.” Disability & Society 31 (2): 149–65. https://doi.org/10.1080/09687599.2016.1152952.

Duplaga, Mariusz. 2017. “Digital Divide among People with Disabilities: Analysis of Data from a Nationwide Study for Determinants of Internet Use and Activities Performed Online.” PLoS ONE 12 (6). https://doi.org/10.1371/journal.pone.0179825.

Ellcessor, Elizabeth. 2016. Restricted Access: Media, Disability, and the Politics of Participation. New York: NYU Press.

Garrido-Cumbrera, Marco, and Jorge Chacón-García. 2018. “Assessing the Impact of the 2008 Financial Crisis on the Labor Force, Employment, and Wages of Persons with Disabilities in Spain.” Journal of Disability Policy Studies 29 (3): 178–88. https://doi.org/10.1177/1044207318776437.

Goodley, Dan, Rebecca Lawthom, and Katherine Runswick-Cole. 2014. “Dis/Ability and Austerity: Beyond Work and Slow Death.” Disability & Society 29 (6): 980–84. https://doi.org/10.1080/09687599.2014.920125.

Hande, Mary Jean, and Christine Kelly. 2015. “Organizing Survival and Resistance in Austere Times: Shifting Disability Activism and Care Politics in Ontario, Canada.” Disability & Society 30 (7): 961–75. https://doi.org/10.1080/09687599.2015.1069731.

Hogarth, Terence, David Owen, Lynn Gambin, Chris Hasluck, Clare Lyonette, and Bernard Casey. 2009. “The Equality Impacts of the Current Recession.” 47. Equality and Human Rights Commission. Manchester: Warwick Institute for Employment Research.

“How to Meet WCAG Checklist.” 2019. Web Accessibility Initiative. October 4, 2019. https://www.w3.org/WAI/WCAG21/quickref/.
Jaeger, Paul T. 2004. Disability and the Internet: Confronting a Digital Divide. Boulder, Colo: Lynne Rienner Publishers.

Lindsay, Sally. 2010. “Disability and the Digital Divide: Gaps and Future Directions.” In Internet Issues: Blogging, the Digital Divide and Digital Libraries, 215–20.

Richards, James, and Kate Sang. 2019. “The Intersection of Disability and In-Work Poverty in an Advanced Industrial Nation: The Lived Experience of Multiple Disadvantage in a Post-Financial Crisis UK.” Economic and Industrial Democracy 40 (3): 636–59. https://doi.org/10.1177/0143831X17750474.

Smythe, Susan. 2015. “Where Is Canada’s Digital Inclusion Strategy?” Policy Note. July 23, 2015. https://www.policynote.ca/where-is-canadas-digital-inclusion-strategy/.

Turcotte, Martin. 2014. “Persons with Disabilities and Employment.” Stats Canada. December 3, 2014. https://www150.statcan.gc.ca/n1/pub/75-006-x/2014001/article/14115-eng.htm.

Williams, Cara. 2006. “Perspectives on Labour and Income – Disability in the Workplace.” Statistics Canada | Government of Canada. February 2006. https://www150.statcan.gc.ca/n1/pub/75-001-x/10206/9096-eng.htm.

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COVID-19 and Disability in Canada

Last night I was asked to provide testimony on the Canadian government’s response to COVID-19. What follows are the speaking notes for my 10-minute opening statement to the House of Commons’ Standing Committee on Human Resources, Skills and Social Development and the Status of Persons with Disabilities (HUMA).

***

Good afternoon. To start, I would like to thank you for inviting me to provide comments and suggestions to this committee. A rally cry of the disability rights movement is the saying “Nothing about us without us” and consultations such as this are an important part of giving voice to a population historically spoken for rather than collaborated with.

My name is Jeff Preston and I am an Assistant Professor of Disability Studies at King’s University College at Western University in London, Ontario which is situated on the traditional lands of the Anishinaabek, Haudenosaunee, Lūnaapéewak and Attawandaron peoples.

My research and teaching practice at King’s seeks to excavate the cultural construction of disabled subjects and the ways popular culture and policy frameworks naturalize and reinforce sane, masculine, able-bodied supremacy.

I am also a person born with a physical impairment, a rare form of muscular dystrophy, who identifies proudly as a disabled person and have used an electric wheelchair since early childhood to make trouble in our world.

While the global COVID-19 pandemic has only recently been recognized as a world altering event in need of critical resource and policy redeployment, the virus has been on my mind since spreading beyond the borders of China. COVID-19 represents a uniquely exigent and existential threat for someone with muscular dystrophy, a disease that most often proves fatal due to pneumonia. With lungs that function at approximately 30%, it is unlikely that I would survive the virus. For this reason, I have been attempting to live in relative isolation since early March.

This attempt has proven uniquely challenging given the fact that I cannot physically live independently. Significantly reduced muscle mass means that I cannot provide for myself the day-to-day requirements of life, from eating to hygiene to repositioning at night to sleep. As such, I depend on others to support my daily care routines, tasks that are all delivered in close proximity. These PSWs, funding through the Self Directed Funding Program in Ontario, drift in and out of my orbit throughout the day. Many of my PSWs are reliant on public transport, as low wages can make personal vehicle ownership a luxury out of reach after covering the costs of living. At any moment my staff could accidentally bring the virus into my home and, because of PPE and sanitizer shortages, I have struggled to erect adequate barriers between me and the outside world. At times, infection seems like an inevitability.

Aside from the obvious physical and viral challenges of COVID-19, a nagging terror felt by myself and many of my friends with impairments revolves around whether or not care will be delivered should we become infected. As the primary fear of immediate death slowly burns away, I, like many others with “underlying medical conditions,” now fear the illness is not the only thing that may end our lives during this pandemic. Failing support systems may be just as deadly.

For someone like myself, the COVID-19 pandemic draws into focus the feeble, unwinding threads of socio-medical entanglements that struggled, in the best of times, to carry the weight of my disabled existence. Access to technicians able to service my adaptive equipment, from electric wheelchair to cough assist machine, becomes fraught in a world of social distancing. Early in the pandemic, the Assistive Devices Program in Ontario that funds these vital pieces of equipment was deemed non-essential and shuttered. If I catch the virus, workplace safety standards will require my staff to wear non-existent PPE to safely continue to deliver in-home care. If hospitalized, strict visitation restrictions mean I will lose access to my support team, becoming fully dependent on overworked nurses to provide the near 24/7 care that I cannot do for myself. As we heard several weeks ago in British Columbia, in the case of Ariis Knight, admission to hospital could mean a profound isolation—cut off not just from social contact but from the delivery of necessary hour-to-hour care that keeps me safe from a whole host of other comorbid threats to body and mind.

We are told, depending on our ability to flatten the curve, that hard decisions will need to be made about who can and cannot be saved. We may be asked to debate the “value” of a person and determine how productive or survivable one must be to merit receiving care. Those most at risk, disabled people and seniors, are now facing the cultural and legal pressures of necropolitics, asked to sacrifice ourselves for the benefit of those deemed more valuable. While we may have vilified the word “eugenics” after the 2nd World War, the ideology remains alive and well in Canada lurking under the auspices of “triage” and “the way of nature”.

In the here and now, what do disabled people in Canada urgently need? The answer to that question is absolutely massive, but here are a few recommendations derived from my own experiences and from those I am in contact with:

  • It is vitally important, in overt and unequivocal opposition to eugenic rationalities, that the Canadian government affirm the rights of disabled Canadians to fair and equal access to medical care and prohibit any value or quality-of-life based triaging of medical equipment or supplies. These types of policies are antithetical to the spirit of the open, diverse and caring country we have tried to build for the past century. And remember, without disabled Canadians the world would not have marathons of hope, a newscaster turned Lt Governor, or the Back to the Future trilogy.
    • We must also ensure that, once a vaccine is developed, distribution will be prioritized to those most in need (such as front-line workers and those with underlying conditions) and not purely based on “economic” or “productive” value
  • To ensure safe isolation for those needing in-home care, easy and affordable access to personal protective equipment is critical, including masks, gloves, and alcohol-based sanitation supplies.
    • We also need to consider funding support for increased care needs during this time, as some tasks that would otherwise be manageable independently may now require outside support.
  • We must validate in-home care staff and family care givers as vital members of an individual’s health care team, not a social visitor, who can provide important additional support in a time when our hospitals struggle with capacity issues.
  • We must secure our long-term care facilities to prevent the spread of the virus from unit-to-unit and from facility-to-facility. Supporting provincial efforts to care for the care givers is critical, including increasing PSW staffing numbers and providing regular paid time off, for recharging batteries or fighting off sickness. Scaling up the number of people working in these roles is critical. This also means a need to re-examine past practices of warehousing disabled people of all ages in medical facilities because of a lack of affordable accessible housing.
  • We need to ensure access for those seeking cognitive, intellectual and emotional therapies or services for pre-existing or newly developing mental illness or distress. While many of these services were deemed non-essential in the early days of the pandemic, with hospital resources being redeployed elsewhere, it is important to get these services back online quickly for those who depend on these programs.
  • We should reflect on the federal government’s determination that those out of work need $2000 per month, plus up to $1000 in earnings, to weather the storm. Meanwhile, programs like the Ontario Disability Support Program have long expected disabled people to subsist on a little over $1000 per month. Why is the cost to live for those with and without a disability presumed to be so different? What does this tell us about the fairness of these programs that are intended to provide a life for those unable to labour in a physically and attitudinally inaccessible neoliberal capitalist economy?

When I was young, I loved playing with LEGO. While I was not very good at the building part, I was great at tearing things apart. There’s something magical about those moments, not just the wanton destruction but what it signals—in the ruins of destroyed projects lay the building blocks of the next great edifice.

In confronting this existential threat, we must ask not just how we survive today but how to live with ourselves once it has passed. We must consider how our system has left us in the current quagmire. We should think of how to rebuild a country that does not require us to make such vital decisions amidst the wreckage left behind by this pandemic. COVID-19 means the world we knew several months ago is gone, but maybe it’s not all bad news.

What if a post-COVID Canada spent more time enabling people than disabling them? What if we reimagine our health care systems to be ones of plenty and not austerity? What if the flexible and digital work arrangements currently offered to nondisabled employees were extended permanently for employees with disabilities who have been asking for this type of access for years? What if we provided Canadians with the things they needed to thrive, regardless of their cognitive or physical ability?

I look forward to imagining some of these possibilities with all of you today. Thank you.