Warehousing disabled people in long-term care homes needs to stop. Instead, nationalize home care.

Jonathan Marchand, a 43-year-old man living with muscular dystrophy, protested in a cage near the Québec legislature, in Québec City, on Aug. 13, 2020. THE CANADIAN PRESS/Mathieu Belanger

Kelly Fritsch, Carleton University and Fady Shanouda, Carleton University https://narrations.ad-auris.com/widget/the-conversation-canada/warehousing-disabled-people-in-long-term-care-homes-needs-to-stop–instead–nationalize-home-care-

The failures in both private and publicly funded long-term care (LTC) homes in Canada have led to 15,000 COVID-19 deaths. Calls to reform LTC through nationalization have become widespread, garnering support from unions, national advocacy organizations and political parties.

While LTC is often considered to be a necessary institution to support the complex medical care needs of seniors, LTC facilities are used to warehouse disabled people who require 24-hour care, regardless of age. And nationalizing LTC fails to adequately resolve the ableism of warehousing disabled people, ultimately maintaining the unjust and inadequate structures of care.

LTC is debilitating for disabled people who are forced to rely on institutionalized daily care. It is time to abolish LTC in Canada.

It’s time to dismantle and replace the LTC system with deinstitutional options that prioritize the flourishing of disabled people and meet the complex care needs of older and younger disabled people outside the confines of institutions.

Warehousing disabled people

At the forefront of the call to abolish LTC facilities in Canada is the Disability Justice Network of Ontario, a disability-run organization based out of Hamilton that advocates for accessible and fulfilling living conditions for disabled people.

Its most recent campaign to abolish LTC seeks legislative action to deinstitutionalize the nearly 200,000 disabled people (including 260 children under the age of 18) living in LTC and begin closing all institutions with records of harm and violence.

They are also calling on leaders to support the nationalization of home care, palliative care, pharmacare and accessible housing that would give disabled younger and older people the option to choose where and how to live in the community with fully funded supports.

The government’s ongoing reliance to confine intellectually, developmentally and physically disabled young people in LTC facilities has been met with protest by the system’s young disabled occupants who demand deinstitutionalization — like Jonathan Marchand in Québec, Vicky Levack in Nova Scotia and Tyson Sylvester in Manitoba.

In June 2018, Sylvester constructed a prison cell in downtown Winnipeg to protest the way in which the Manitoba care system “locked him out of his own life.”

Marchand similarly camped out in a makeshift cage on the lawn of Québec’s National Assembly in August 2020, and in August 2021 was able to move into his own apartment after receiving in-home support.

A woman wears a pink shirt and looks at the camera. She has purple glasses.
Vicky Levack is a spokeswoman for the Disability Rights Coalition. THE CANADIAN PRESS/Michael Tutton

In addition to the urgent calls for change coming from young disabled people caged in LTC institutions, the deplorable living and working conditions of LTC facilities in Canada has also been well documented in over 150 scathing reports.

The scope of death recorded in LTC facilities during the pandemic is yet another marker of the system’s inability to provide the necessary care and support for its wide-ranging clients. However, the harm experienced by older and younger disabled people who continue to live in these spaces deserves action as much as condemnation.

Prisons by a different name

Nationalizing LTC, sometimes referred to as publicizing the system, would undoubtedly take profits out of LTC and may create system-wide changes to improve residents’ conditions. However, these calls ignore the fundamental character of LTC facilities as an extension of the carceral state, essentially prisons by a different name.

For example, LTC facilities frequently use carceral mechanisms of control such as the use of psychotropic medication, locking residents in their rooms and the use of physical restraints.

Residents are not able to choose what and when they eat, when they wake up or bathe, or when they can have visitors. LTC institutions seek to maximize resident surveillance and control while minimizing staffing costs.

In order to create a national home care program, workers need higher pay, job security and robust benefits. When working conditions are poor, staff shortages will occur whether due to low pay, precarious hours and physically demanding work, or because of workplace injury or illness (as with workplace COVID-19 exposure).

Staffing shortages mean that disabled people do not receive adequate or consistent care, resulting in malnutrition, dehydration or untreated bed sores. Abolishing LTC is about establishing better working and living conditions for both care workers and disabled people.

Philosopher Shelley Tremain refers to publicly owned nursing homes as the “window-dressing” of the nursing home industrial complex that “operates in the service of ableism, ageism and racism.”

It is clear that regardless of ownership — by private corporations or public agencies — the warehousing, caging and incarcerating of older and younger disabled people is an act of violence.

In Canada, solidarity is building between prison abolitionist movements and disability justice over the shared injustices of incarceration in prisons and disabled people’s institutional confinement. These movements help us build the political will necessary to move toward a world with no more LTC institutions.

We must support disabled people’s call to abolish LTC and develop a national home care, palliative care and pharmacare system that robustly funds and prioritizes disabled older and younger people’s desire to live in community.

Kelly Fritsch, Assistant Professor, Sociology and Anthropology and Director of the Disability Justice and Crip Culture Collaboratory, Carleton University and Fady Shanouda, Assistant Professor, Critical Disability Studies, Carleton University

This article is republished from The Conversation under a Creative Commons license. Read the original article.

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