They Promised Never Again: Institutionalization in Pandemic
Written by: Megan Linton
COVID-19 has reinforced what many in the disability community have long known; institutionalization did not end in 2008. The role of institutionalization amidst the COVID-19 pandemic has been tragic, resulting in the highest rates of mortality amongst people in custodial institutions. Disabled communities have been disproportionately impacted by COVID-19, as a result of decades of budget cuts, neoliberalization efforts, and by the ongoing usage of custodial models of care.
Disabled people, particularly people labeled with intellectual and/or developmental disabilities (IDD) are more likely to be in prisons, long term care facilities, and psychiatric institutions, all facilities where COVID-19 outbreaks have been most lethal. Disabled people labelled with IDD are relegated to these facilities as a result of the failure of the government to properly fund community living, resulting in more people on the waitlist to access group homes than actually in group homes. There have been several outbreaks in group homes and residential care facilities, most fatal of these were the 6 deaths at Participation House.
While the pandemic has changed all of our lives significantly, lives inside custodial institutions and group homes have become increasingly confined. Inside group home and residential facilities, residents are directed to remain in their rooms, which some have reported sharing with more than five people, despite being designed for a single occupant. Both the Federal and Provincial government has set out protocols for COVID-19 in congregate care settings, however, none of the protocols have discussed needs, rights and treatment of residents amidst the pandemic. Additionally, the protocols do not outline increased inspection of residences, which were already experiencing decreased inspections over the past year.
In congregate care settings without protocols in place, facilities are increasingly placing residents in lockdown. Congregate care settings are largely built around residents using common spaces, which allows resident’ bedrooms to be smaller, thus allowing for more residents (thereby, more profit) in one building. Throughout the pandemic, residents are no longer allowed to be in common spaces, relegating them to their rooms, often which have little more than a bed, and window. Residents no longer have access to recreation programming, family visits, or the ability to leave the facility.
The Government of Ontario has recommended the cancellation of all activities within homes, relegating patients to their rooms. In an April directive, they recommend “residents remain in their room. If rooms are shared, residents should keep as far apart as possible from each other (e.g., “head to foot” or “foot to foot” placement of beds)”. Homes are not meant for the containment of residents, and have been critiqued for decades for their reliance on institutional models of care. The pandemic has reinforced the institutional structures of group homes, residential care facilities and long term care.
Residents in long-term care facilities and retirement homes have the most robust protections from abuse. The Residents’ Bill of Rights applies to all municipal, charitable, and for-profit long term care facilities, it guarantees residents 27 rights. These rights are protected, and enforceable. Residents are able to file complaints on infringement of rights, and importantly, are able to take long term care providers to court for breach of contract if they do not comply with the Residents’ Bill of Rights. These rights were created in order to protect patients from abuse, and to guarantee the right to independence in a congregate setting.
However, throughout the pandemic we have seen these rights being eroded institutionally. Residents are repeatedly being neglected, are left without their needs met and access to communication. The harrowing accounts thus far show the need for the government to ensure the provision of rights where possible, and outline what resident rights’ are amidst a pandemic.
Along with the increasingly carceral settings in long term care facilities, group homes and psychiatric institutions are experiencing similar conditions with reduced access to rights. Rights of residents’ in group homes and intensive supportive living are absent from municipal and provincial legislation, leaving them vulnerable to abuses and infringement, and with minimal access to institutional accountability.
While the protection of residents from COVID-19 should remain the top concern, the lack of a strategy to support residents during COVID-19 has reinforced institutional models of care that strip residents of their rights. Institutionalization prevailed past the closure of Huronia, and as long as custodial care is normalized and accepted, pandemics will flourish in these settings. Supporting disabled people during COVID-19 must include advocating for an end to custodial care, from prisons to long term care.