Introduction

Webcast Archive: The tally: COVID-19 and people with disabilities

This week we summarize the impact of the Coronavirus pandemic, and the policies meant to contain it, on disabled people.

Webcast Archive: The tally: COVID-19 and people with disabilities

During the COVID-19 pandemic, we will not present our webcast, due to technical problems caused by heavy internet usage. However we are providing the text as a bulletin to offer up-to-date information about assisted suicide, euthanasia and ending-of-life practices for the disability community.

THE TALLY: COVID-19 AND PEOPLE WITH DISABILITIES

  • The COVID-19 Pandemic has had a disproportionate impact on people with disabilities and people of colour.  This is partly due to the lower value placed on the lives of disabled people and racial and ethnic minorities.
    • The highest casualty rates have occurred in nursing homes, prisons, and other institutions:
      • Among residents (predominantly people with disabilities, regardless of age);
      • And workers (especially women and racial and ethnic minorities).
    • People who work in low-wage jobs (Personal Support Workers, farm workers, and meat packing) are overrepresented among those infected because of cramped and unsafe living and working conditions, and lack of infection-control procedures or protective equipment.
    • Prisons have become a common custodial care setting for people with disabilities, and black, brown and indigenous people are over-represented in the prison population.
    • Disproportionate death rates among racial and ethnic minorities.
    • Quarantine procedures have disrupted home-based services.
    • Services that enable people with disabilities to live in the community (like home delivery of groceries and medications) often charge a premium or are overwhelmed and unavailable. 
  • Disabled people are mostly excluded from policy-making in response to the pandemic.
    • The federal government appointed a COVID-19 Disability Advisory Group to provide policy guidance on issues related to the pandemic.
    • None of the provinces has followed suit.
  • The pandemic has both highlighted and worsened the problems of warehousing people in institutions that we’ve known about for 60 years, since the exposure of conditions at the Huronia Regional Centre in Orillia, Ontario in 1960.
    • Governments cling to this obsolete policy, promising to build new nursing homes rather than shifting funds toward self-directed community-based care.
    • The lack of community-living options violates article 19 of the U.N. Convention on the Rights of Persons with Disabilities.
    • An inadequate number of facility inspectors means specific problems go undetected for years.  Political foot-dragging means the problems, repeatedly exposed in studies and reports, are met with hand-wringing and crocodile tears.
    • These “Ordinary” problems of institutional living are aggravated by the pandemic: 
      • chronic understaffing is made worse when staff fall ill with COVID, by quarantine restrictions, lack of protective equipment, low morale, and poor infection control procedures. 
      • Virtual incarceration; residents have no choice of schedule or freedom of movement. This is amplified by quarantine restrictions. 
      • “Institutional procedures” that have a dehumanizing impact, such as inadequate staff time to help residents eat or to bathe regularly, and using adult diapers instead of helping the person to the toilet, are made worse by prohibiting visits from family members who help with personal care and communication.
      • Residents can’t control who assists them or how. This condition is made more dangerous when Personal Support Workers transfer from other units or facilities without quarantine restrictions or infection control.
      • Existing problems of abuse, neglect, and unsanitary conditions are aggravated by absenteeism and low morale.
  • Other problems related to COVID-19 policies.
    • Increasing wages for institutional employees to make up for staff shortages lures workers away from providing home-based care.
    • Proprietary software and digital locks make it difficult to repair or adapt ventilators and other medical equipment. 
    • People whose health deteriorates due to poor-quality care (i.e. insufficient time to eat, poor wound care) are placed on “palliative care” where food and water are withdrawn, whether or not they have COVID-19. 
    • Medical assistance in dying, which is classified as an “elective” procedure, continued, despite the suspension of other elective procedures.
  • Ontario and Québec issued triage protocols which drew fire from disability rights organizations because they failed to conform to principles of non-discrimination described in the Evaluation Framework for crisis plans.
    • Both the Ontario and Québec protocols mention specific disabilities, such as cognitive impairments, Parkinson’s disease, ALS, and cystic fibrosis, as criteria for exclusion.
    • While neither protocol uses “quality of life” measures, they both use the Clinical Frailty Scale, a measure of a person’s overall health based on their ability to independently perform certain activities of daily living.
    • Both protocols use potential for long-term survival as a threshold eligibility criterion, which puts people with chronic illnesses and disabilities at a disadvantage for getting treatment and fails to account for the significant uncertainty surrounding long-term survival probabilities.
  • Side-stepping Triage policies
    • Policies are not invoked if there’s no strain on the system
    • There’s no strain on the system if people aren’t sent for treatment in intensive care units from nursing homes
    • This is de facto triage by age and disability. 

There’s hope in fighting back

  • #NoBodyIsDisposable is a coalition of queer, fat, disabled folks and people of colour who have challenged discriminatory policies and created educational materials.
  • The Black Lives Matter movement has amplified the voices of disabled people of colour, as they speak about the intersectional nature of racism and disability discrimination.
  • In response to criticism of the Ontario triage protocol, it was withdrawn and has not yet been replaced. Québec’s triage protocol is being challenged by advocates who have launched a petition.
  • Communication and accessibility options have expanded through the adoption of working from home and online meetings. The isolation that disabled people live with all the time has become the norm for everyone else.