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Ontario’s hidden institutions

Facilities like ‘domiciliary hostels’ are an outdated model of custodial care that violates disabled people’s rights

COVID-19Canadian PoliticsHuman Rights

Domiciliary hostels, which are less strictly regulated than long-term care facilities, are privately run and operate for profit—and they have been decimated by the pandemic. Photo courtesy the Vitanova Foundation.

Long-term care facilities have been decimated by COVID-19, with almost three-quarters of all pandemic-related deaths in Canada occurring within them.

But there’s another type of institution in Ontario that is somehow even less regulated and less transparent than long-term care facilities: residential service homes, also known as domiciliary hostels.

Domiciliary hostels typically fall under municipal jurisdiction and are run privately and for profit, however they also receive subsidies from provincial and city governments. According to a news report from 2010, Ottawa has close to two dozen such hostels operating within city limits.

Residents of these institutions—usually chronically unhoused, older, and/or disabled—are often segregated apart from the community, forced to share a single bathroom with up to 150 roommates, live without privacy in rooms shared with three people, adhere to set meal times, and receive a meager $149-per-month allowance.

Due to the fact many residents deal with mental illness, staff are responsible for handling residents’ personal finances and paying their bills.

In early January, it was reported that one-third of 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.

The mother of a man who lives in the facility and tested positive for COVID-19 told media that residents are “just as vulnerable as those in long-term care, but the facility is not under the provincial health umbrella.”

Information on residential service homes is incredibly sparse. A 2009 survey reported that 4,700 people live in these homes in Ontario. We know very little about living conditions within these facilities, who owns them, their size and staffing levels, or their record of health code violations. What’s more, there is no centralized database for reporting on these municipally regulated institutions.

What we do know is that for decades, disabled people, government officials, city councils, and auditor generals have called for an investigation into and an end to these institutions recognizing that they represent an outdated model of custodial care that violates disabled people’s rights to privacy, autonomy and freedom of movement.

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.

In 2013, then premier Kathleen Wynne delivered an apology to the thousands of survivors of the Huronia and Rideau Regional Centres.

Regional centres were provincially operated large-scale residential institutions for people with Intellectual/Developmental Disabilities (I/DD). Inside these institutions, disabled people were subject to violence, sexual abuse, forced labour, and medical abuse.

These regional centres were what is often considered “total institutions,” completely segregated from the local community with an administered routine. Total institutions create conditions that normalize violence because of the lack of power and autonomy available to residents.

Deinstitutionalization of regional centres and provincial psychiatric institutions emerged as neoliberalism rose to prominence across Canada in the latter part of the 20th century. While activists, survivors, families and medical experts advocated for deinstitutionalization in order to significantly improve the lives of disabled people, the political desire for deinstitutionalization was driven by a desire to privatize and decentralize social services.

Residential service homes were born in the 1950s as a private market institution for older people who did not yet qualify for long-term care. However, as long-term care institutions and retirement homes faced increasing provincial regulation throughout the 2000s, residential service homes were shifted to become the responsibility of municipalities.

Similar to regional centres, residential service homes are disproportionately located outside city limits. This geographically isolates disabled people from community, services and leisure. In a 2009 survey of domiciliary hostel program tenants in Ontario, researchers found “More residents of domiciliary hostels, a custodial housing program in Ontario, visited doctor’s offices and health clinics than went out to parks, shopping centres, or movies in the last 12 months.”

While they were intended to be smaller, residential service homes found the opportunity to expand. This has shifted drastically. Today, more than 75 percent of residents are under 65 and 23 percent of residents are labelled with an intellectual and/or developmental disability. Despite this, policy has done little to align with this new population and custodial models of care remain routine.

As of 2017, the waitlist for residential services for adults with I/DD included 15,700 people. As a result, adults with I/DD are dispersed across a wide-range of congregate institutions, including prisons, long-term care institutions, and psychiatric facilities.

Institutions like residential service homes present the perfect conditions for a virus like 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 enable the spread of COVID-19, but they prevent independence and access to privacy. Landlords are responsible for the administration of medication, meals and even personal allowance. Yet, residents are expected to pay for cable and internet, which is more necessary now than ever. The poverty wages they receive creates a cycle of institutionalization that often becomes difficult to escape.

The pandemic has cemented the tragic reality of institutional living in long-term care into the public consciousness. In January, Chris Gladders, a 35-year-old disabled man, died through medical assistance in a Niagara Falls retirement home where he was forced to live in abject conditions. According to a report by Global News, when Gladders’ family arrived to say goodbye to him in his final moments, “urine and fecal matter” was visible on the floor of his room, “along with dark specks on the walls and in the sink.”

Gladders’ family linked his death directly with his nature of his institutionalization. According to his brother, “I believe, in my heart, that him being in that place played a big toll on his decision. I really do.”

These conditions mirror what has been found in residential service homes. In 1989, a doctor at a retirement home owned by Hamilton’s Martino family found “feces soiling the feet and shoes of an elderly [disabled] woman. Live maggots were found in one shoe.” In 2016, another Hamilton residential care company came under scrutiny following a city licensing review, which found violations of nutritional requirements, fire protocol and property standards bylaws. At the time a step-mother of someone who lived in one of these institutions told The Spectator: “They are not getting food properly. They are not getting the basics. And they are scared. These are vulnerable people.”

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.

While Canada has not collected disaggregated data on the impacts of COVID-19 on people with intellectual disabilities, data from the United States shows that they are two to three times more likely to die from the virus.

For generations, disabled 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.

Yet, 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 ones: 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 whose primary response to disability is confinement.

The government’s desire to invisibilize these institutions will never protect their vulnerable residents from the mass outbreaks we are seeing today.

Megan Linton is a disabled, occasional writer and graduate student based in Winnipeg and Ottawa. Her research interests focus on sexual citizenship, institutions and disability, with a commitment to disability justice. Find her tweeting about sex and disability @PinkCaneRedLip.

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