Among the most vulnerable and the least consulted groups, disability communities have been hit hard by COVID-19. The crisis has revealed and exacerbated major gaps and inequities, showing that social and physical isolation do not affect everybody the same way. People with disabilities are already more likely to be underemployed (and have a harder time closing skills gaps), under-housed and socially isolated, all of which have been compounded by increased disruptions in routines, relationships and therapies, and the mental and physical toll of distancing.
While programs across the country attempt to create opportunities for social connectedness – including the EveryDay Friends Social Network at the Miles Nadal JCC – these are largely ad-hoc and underfunded. We need a strategy to support people with disabilities and to create respite opportunities for caregivers. All levels of government have considerable work ahead in addressing pre-COVID-19 cracks in the system and ensuring a better way forward. Disability rights activists’ long-time rallying cry of “nothing about us without us” must be heard if we are to learn the lessons from this period as we look toward recovery.
Existing Gaps Have Gotten Worse
Income Supports
Funding programs like the Ontario Disability Support Program (ODSP) have provided insufficient support – ODSP provides just over $1,000 a month, far below Ontario’s 2017 poverty line of about $23,000 for a single person. Additional and predictable direct support is needed from the province and should be considered as part of emergency planning. A reassessment of our provincial programs must be at the centre of post-COVID-19 recovery. Without sustained investment in income security reform, there simply is no recovery for this segment of the population.
The Canada Emergency Response Benefit (CERB) offers a more viable funding level of $2,000 a month, plus allowing up to $1,000 in additional earnings, while provincial programs like ODSP have remained at the same unrealistic funding level. Despite the federal government advising provinces and territories to not claw back the CERB from those on social assistance, provincial governments have responded unevenly. Some have exempted CERB earnings altogether while others, including Ontario, have announced a partial claw-back. These mixed responses reveal a lack of understanding of the realities faced by people with disabilities and have compounded existing communications challenges around eligibility and income.
A crisis-period support designed for disability communities could take many forms, from increased program supports to tax credits, and would be better than clawing back the CERB. The design and implementation of the CERB has opened the door to a broader conversation around what a motivated government is capable of and who will be taken care of or left out of our economic recovery. Though disability communities have been left out of pandemic response measures, there is still time to ensure a more equitable recovery.
Food Security
People with disabilities are more likely to have lower household incomes, to be underemployed and to live in poverty. Food security is an ongoing issue directly linked to insufficient income supports, and physical distancing has furthered insecurity with increased demand to existing services. People who already relied on grocery and pharmacy deliveries because of mobility disabilities have been displaced by the waves of new people seeking these services. Loblaw Companies reported that demand for its online grocery delivery service more than doubled since March, while orders from online grocery delivery service Instacart were up 400 per cent from spring 2019. Depending on post-pandemic behaviour, these services may be overburdened far into the future, leaving people who traditionally relied on deliveries with greater need but reduced access.
Assistive Devices
The Ontario Assistive Devices Program, which provides funding for wheelchairs and other assistive devices, was deemed non-essential and shuttered from March until April 29, leaving many people with disabilities without mobility devices. Broken wheelchairs could not be replaced or repaired. Kids who had outgrown their devices could not upsize into new ones. Even modest federal investments in existing programs, in partnership with provinces, could go a long way in improving service delivery and quality of life.
Education and skills gaps
School boards across the country have failed to support students who need special education supports. In some cases, no at-home resources have been provided. These students, who are already more vulnerable to the disruptions in routine and the lack of supports, are being left behind. Ontario’s Learn at Home program promises quick and easy access to some of Ontario’s best online learning resources but the program isn’t accessible to students who are deaf, blind or unable to use a mouse. Without supports, students are left learning in a very limited capacity or not participating at all in educational activities. Like many government programs, it was designed solely with able-bodied users in mind. Ontario’s publicly funded education system, along with systems in other jurisdictions, must be accessible for all learners.
Beyond K-12, an increased dependence on technology in education or in the workplace raises new concerns over equitable access. Some are unable to afford the equipment or technological upgrades required for working remotely, and for those who lack the technical expertise required to thrive in a new normal dominated by digital communication, skills and professional development opportunities are needed.
Inaccessible Information
Information about COVID-19, social distancing and new social benefit programs has not been made available in plain language. Ad-hoc efforts to answer common questions, including this one by Jennifer Robson, are excellent resources but limited in their reach. The closure of Service Canada offices has furthered the gap between information and the people who need it most. There is a dearth of information and a great deal of confusion. The most vulnerable are not informed about what they are eligible for and how it might interact with benefits they already receive. This problem is not unique to disability communities – everyone is in need of greater clarity around which supports they can access – but confusion and acute need can have dire consequences for individuals and families. All three levels of government have a role in developing and distributing accessible communications materials for a range of users, especially during crises.
Emerging Challenges: What happens when we get sick?
Valuing Life Equally
Disabled lives cannot be valued less than non-disabled lives in medical triage. This is a real concern and fear in disability communities, and a human rights lens on these issues is critical. We know that people with disabilities, especially those who require supports from others for daily living, can be less likely to access critical care. Pandemic-level emergency scenarios only amplify this fear.
The Canadian military has shone a much-needed critical light on Ontario’s long-term care system, but people with disabilities living in these facilities cannot be overlooked. The relationship between disability communities and long-term care homes is complex. People with disabilities who need more intensive medical support, including young people, often end up in long-term care by default when they have nowhere else to go. Reform to the long-term care sector, which should feature a person-centred care approach, must take into account people with disabilities.
Wherever people with disabilities are receiving care, people with communication disabilities need access to their assistive technology and communication supports so they can access caregiver support and communicate their needs. Fully accessing care requires consistent communication supports, particularly when communication is a matter of life and death. Policymakers should embrace the need for people with disabilities and their advocates to be directly involved in policy-making and critical care protocols.
Testing and access to care
Medically vulnerable people and those with mobility disabilities cannot safely access COVID-19 testing centres. For those using para-transit, there are risks in travel to testing sites as transit is shared with other riders. In-home testing must be available to this priority group. While testing has been made available to some people with disabilities living in congregated settings, in-home testing has not yet been launched for people with mobility and other disabilities who face barriers in accessing testing, and who face greater risks in testing centre environments.
Access to care for people with disabilities means more than giving them a bed. Getting sick can cause great anxiety and limit access to vital care and personal support in the tasks of daily living, potentially resulting in long-term effects for those living with intellectual and physical disabilities. The mental health impacts on people who do understand why they are cut off from family, friends and supports are also considerable.
Even for those who are not personally sick, public health measures designed to mitigate the spread of illness can severely limit access to mental and physical health care for disability communities. Their needs persist even as visitation rights are limited in health-care settings, especially where family or other non-medical partners in care are refused access. Controlling the spread of disease is critical but visitation bans have consequences for people with disabilities. Just as is done in long-term care homes and hospitals for people with unique needs, essential support workers and family members must be permitted to access homes for people with intellectual, developmental and communication disabilities.
Workplace Safety
Many people with disabilities need Personal Support Workers for support with the tasks of daily living. Many Personal Support Workers have faced work environments where there is insufficient personal protective equipment; some have fallen ill, and some have died. Personal protective equipment, supplied by employers and governments, should be non-negotiable. While the Ontario government has increased pay for these workers, more attention needs to be paid to their workplace safety standards. These caregivers, and in some cases family caregivers, are vital part of a care team and need to be recognized as such.
The #NotAVistor campaign highlights the importance of these caregivers in support, care and decision-making teams to people in group homes, long-term care homes and hospitals, and cautions about the dangers of these institutions operating without this kind of support and family oversight.
Looking Forward: Recovery
The lack of consultation in the COVID-19 response has led to dire outcomes – people with disabilities have less access to testing, insufficient income supports, limited education options, and have seen medical ethicists and government policy-makers debate the very value of disabled lives if ventilators are scarce. The federal cabinet minister responsible for disability inclusion, Carla Qualtrough, has set up a COVID-19 Disability Advisory Group. Municipalities and provinces should follow suit, and should fill those committees with people with lived experience. Engagement with disability communities will be vital in sorting out jurisdictional issues and confusion, and hopefully modernizing system delivery.
Canadians with disabilities will disproportionately feel the impact of the looming economic crisis and need to be a priority group with new funding for income supports, accessible affordable housing, mental health care and social supports. The speed and nimbleness of recent federal supports have frustrated equity-seeking groups with long-standing asks for more empathetic government, but have also provided optimism for a more responsive, dignified way forward. Developing appropriate supports at the federal and provincial level, and ensuring they are accessible and communicated in plain language, are the basis of any plan for improving the lives of people with disabilities. The “next normal” must learn from the mistakes and missed opportunities of the crisis period. The underwhelming consultation with disability communities as part of emergency planning was regrettable but unsurprising; being left out of recovery efforts, especially when money is flowing so freely, is inexcusable.
Liv Mendelsohn is Director of Accessibility and Inclusion at the Miles Nadal Jewish Community Centre, and Artistic Director of the ReelAbilities Toronto Film Festival. Liv is the recipient of the City of Toronto 2019 Disability Access Award and has been a field instructor for the Faculty of Social Work at the University of Toronto. Dani Saad is a public service leader and policymaker who has spent nearly a decade working in policy, politics, and non-profit governance, who currently serves on several non-profit boards and is co-chair of CivicAction’s Emerging Leaders Network.
