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Vaccinate + Deinstitutionalize Now: Residential Service Homes and the Failure of Independent Living

Written by: Megan Linton

Picture of a sign that says Edgewood Care Centre. 9 Stevens Ave. The sign is beside a pile of snow, sideways, in front of a brick building

The most recent outbreaks at residential service homes and long term care facilities in Ontario demonstrate the urgent need to continue pursuing deinstitutionalization in the province. It was reported on Monday that a third of the residents at Edgewood Care Centre, a residential service home in Ottawa where between 120-130 disabled adults are confined, had contracted COVID-19. Despite being a long-term residential institution, these residents are not included with long term care and retirement homes in the first wave of the vaccination rollout.

Government authorities need to prioritize vaccinating people in the Edgewood Care Center, along with all other forms of residential institutions for disabled people— shelters, prisons, psychiatric institutions, homes for special care, group homes and supported living facilities in distributing the vaccine. While Canada has not collected disaggregated data on the impacts of COVID-19 on people with intellectual disabilities, data from the US shows that they are 2-3x more likely to die from the virus.

The size and population of such an institution alone demonstrates the failure of the Ontario government to provide community living for disabled people, and their modern commitment to archaic models of institutionalization. Amidst the overwhelming pressure facing hospitals, it is imperative for disabled people in institutions to be vaccinated. This imperative given the discriminatory triage protocols that understand disabled life as less valuable under what has been called ICUgenics (intensive care unit eugenics).

For generations, disabled and Mad people, and their allies, have been fighting against institutionalization. This fight has led to the closure of all provincially-operated residential institutions in Ontario, and reduced psychiatric institutionalization. But, as we have seen since the beginning of the pandemic, this fight is far from over— institutions are like hydras, as one head is cut off, two more emerge. What emerged from the loss of these public institutions is a large network of private institutions: group homes, residential service homes and homes for special care. These new (or old) forms of institutionalization will continue cropping up as long as we live in an ableist society who’s primary response to disability is confinement.

Residential service homes were born in the 1950s- along with the private long-term care industry- as an interim institution for older people who did not yet qualify for long-term care. This has shifted drastically, today more than 75% of residents being under 65 and 23% of residents are labelled with an intellectual and/or developmental disability. Despite this, our policy has done little to align with this new population and custodial models of care remain routine.

Institutions like residential service homes have perfect conditions for COVID-19 to thrive. Bedrooms shared between two to four residents, communal dining areas and bathrooms, and close quarters make isolation impossible. These confined spaces not only spur the spread of COVID-19, but prevent independence and access to privacy. Landlords are responsible for the administration of medication, meals and even personal allowance— a mere $149/month. Yet, residents are expected to pay for cable and internet, which is more necessary now than ever. This poverty wage creates a cycle of institutionalization that is difficult to escape.

Disabled people have routinely been denied their survival by their government. Urgent access to the vaccine would prevent further suffering and loss amongst disabled people. For 33 years the Ontario government has recognized the failure of these institutions, noting misalignment with their present policy of independent living, but continues to support institutional models of care. The government’s desire to invisibilize these institutions does not protect them from the mass outbreaks we are seeing today.

Megan, a white woman with brown bangs, smiles into the camera, laughing. The background of the phot is completely black

Megan Linton is a disabled writer and graduate student currently based in Ottawa. You can find her tweeting about disability, institutionalization and abolition @PinkCaneRedLip or more of her writing here


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