When Vicky Levack was 21, the government of Nova Scotia told her that because of the “complex” needs of her cerebral palsy, she had no choice but to live in a long-term care facility.

Being institutionalized turned her into an activist, fighting for dignified living conditions. Many aspects of Levack’s life have been dictated to her at Arborstone Enhanced Care—from her meals to her schedule—for the last 10 years. “My life is outside of these walls,” Levack said in an interview.

In August 2021, after a decade of advocacy, she learned that she will be able to live in community as a part of a provincial housing pilot project that will move four disabled people out of institutions and into condos with the help of a 24-hour support worker. For Levack, the move means regaining her autonomy: “I will get my personhood back.” She’s not asking for much, just her own apartment where she can host her friends and eat “anything that isn’t potatoes.” For her inaugural meal, she wants to eat three-cheese tortellini with pesto and goat cheese.

Levack is hoping her new home can also serve as a meeting space for community groups she organizes with in Halifax. She’s planning on running for city council in the next couple of years and accessible organizing spaces are hard to come by. Once she gets the keys to her new place, she’s excited to tell her fellow organizers to “come down to my house!”

A meal on March 16. Photo: Vicky Levack

She was supposed to move into her new home this past December—but it’s now been delayed until sometime this spring. In response to the delay, on February 9, the Disability Justice Network of Ontario (DJNO) held a press conference demanding the Nova Scotia government release Levack from Arborstone Enhanced Care in Halifax, and provide her with support for independent living. DJNO claimed confining Levack to a long-term care facility puts her health in jeopardy because of the egregious number of COVID-19 outbreaks that occurred in long-term care facilities throughout the pandemic. The Breach reached out to the Nova Scotia Department of Health and Wellness about Levack’s case, but a spokesperson said the department could not comment on individual cases. 

Before the pandemic, Levack spent most of her time outside of Arborstone—meeting up with friends and organizing with disability justice groups. But living in a long-term care facility during the pandemic has been isolating. The Nova Scotia Department of Public Health placed all residents of long-term care facilities under lockdown again in December due to the Omicron variant, and measures were only lifted on March 7. For more than two months, residents were only allowed to leave the institutions for medical appointments. If they wanted to leave for any other reason, they had to contact the Chief Medical Officer for permission. 

Levack describes the treatment as patronizing. She says that as a disabled person, she’s acutely aware of the dangers of Omicron, but the government is stripping her of control over her life. “I feel like I am under surveillance,” she said.

Levack is one of 13,580 people under the age of 65, including 230 children, living in over 2,000 long-term care facilities across Canada. Like many others, she never wanted to move into a long-term care facility, but has been left with no other choice since the Government of Nova Scotia has denied Levack social assistance and at-home care services. 

Vicky Levack in her room at Arborstone.

‘There’s no data’

Levack’s decade in a long-term care facility points to the larger issue of the ongoing institutionalization of disabled people across Canada, particularly in Nova Scotia. In October 2021, the Nova Scotia Court of Appeals found that “Successive governments of all political stripes simply ignored everyone over decades and condemned our most vulnerable citizens to a punishing confinement.”

The finding was a result of a 2016 human rights appeal filed by Beth Maclean, Sheila Livingston and Joseph Delaney—all people labelled with intellectual disabilities who had been forced to live in psychiatric institutions. Maclean was stuck in a psychiatric institution for 15 years despite pleas from public servants for her to be released. In his decision, board of inquiry chair Walter Thompson declared that “the Province met their pleas with an indifference that really, after time, becomes contempt.”

The use of long-term care and psychiatric institutions in Nova Scotia as permanent homes for people with disabilities is not unusual in Canada, according to disability researcher, policy analyst and DJNO organizer Megan Linton. In fact, long-term care facilities represent one site among a complex web of institutions disability justice organizers say are “warehousing” disabled people in Canada.

Linton’s policy research and work with the Tracing COVID-19 project addresses the pervasive issue of data gaps for disabled people. The problem, she said, is that “there’s no data on disabled people living in institutions. We don’t know how many people are living in the institutions, who owns them, where they are, what conditions people are living in.”

While the federal government records general data on long-term care facilities—the institutions that primarily house older people—there are a whole host of other institutions for disabled people which mostly fly under the radar. The Canadian census includes little information on residents of institutional settings[1] and there’s no centralized directory for institutions for disabled people. So Linton started her research by digging through every policy document, auditor general report and committee minute that she could find. This led her down a seemingly never-ending rabbit-hole of institutions. 

Among the institutions warehousing disabled people, Linton lists group homes, halfway houses, boarding houses, domiciliary hostels, mental health group homes, addictions, treatment and sober facilities, psychiatric wards, and institutions for adults labelled with intellectual disabilities. Linton says the lack of information “makes it really challenging for people to understand the context of disabled people’s lives right now.”

Linton has been especially frustrated with the lack of information on these institutions concerning COVID-19. Throughout the pandemic, long-term care facilities made national news daily for their egregious death toll, but the other institutions Linton discusses remain in the shadows. 

Carlingview Manor, a long-term care facility hit hard by coronavirus.

COVID information incomplete, despite vulnerabilities

Journalist and author Nora Loreto has been tracking COVID-19 outbreaks in long-term care facilities every day since the beginning of the pandemic. But up until May 2021, the best estimate she could come up with for COVID-related deaths in congregate care settings (characterized by shared living spaces) was 18 residents and two staff. Loreto knew those numbers were much too low—COVID-19 infection is much more deadly for disabled people and institutions are the primary site of COVID-related deaths.

At the end of May 2021, Linton discovered at least 69 residents and six staff died from COVID-19 in congregant care settings in Ontario, deaths which hadn’t yet been publicly revealed. But these deaths are only from three kinds of facilities—homes for special care, residences for adults labelled with intellectual and developmental disabilities, and group homes and domiciliary hostels—meaning there are very likely deaths not included in this figure.

On January 14, CBC revealed that there had been a COVID-19 outbreak at Kings Regional Rehabilitation Centre, an institution for people labelled with physical and intellectual disabilities located in Waterville, Nova Scotia. According to Health Minister Michelle Thompson, unlike nursing homes, the Government of Nova Scotia won’t disclose details about outbreaks in publicly-funded, non-profit institutions to protect the privacy of residents. 

In Ontario, for most of the pandemic, any publicly-available information about COVID outbreaks in congregant and group home settings is from Public Health Ontario (PHO)’s regular epidemiological summaries. As of July 16, 2021, PHO reports that there have been 921 outbreaks in these facilities with a cumulative 5,313 cases. Importantly, this summary doesn’t include any deaths.

On February 23, Linton launched a podcast called Invisible Institutions to expose the realities of institutionalization. She hopes that her podcast can help fill the gap in public understanding about disabled and institutionalized life in Canada. One aspect of disabled life Linton wants to highlight is how the lack of support for disabled people to live in community coerces them into institutionalization. She cites a shortage of affordable and accessible housing, expensive pharmaceuticals and assistive devices, and a lack of public home care among the reasons disabled people are forced to live in institutions.

Disabled people are routinely told that their needs are “too complex” for independent living, but Linton says this simply isn’t true. Rather, she suggests, it’s a question of provincial governments’ unwillingness to fund necessary supports.

Jonathan Marchand’s protest camp in 2020. Source: Telejournal

Two classes of disabled people

Linton pointed to the case of Jonathan Marchand, a 44-year-old disabled man based in Quebec City. Like Levack, Marchand was also forced to live in a long-term care facility at an early age. In 2010, Marchand suffered from a severe case of pneumonia and was hospitalized for more than two years. Upon his release, the government of Quebec refused to provide support for at-home care.

There is no public program for home care in Quebec, which, as Paul-Claude Bérubé, a lawyer who chairs the Canadian Accessibility Standards Development Organization, told CBC, “creates two classes of people with disabilities—those who have money, and those who don’t.” In Bérubé’s opinion, the Government of Quebec doesn’t want to fund at-home care because some Quebecers are able to pay for it out of pocket. 

Marchand was able to get out from long-term care before the onset of the second wave of COVID-19. In August 2020, he camped outside of Quebec’s National Assembly in a makeshift cage symbolizing life in a long-term care facility. After an estimated 1,000 hours of work and 100 meetings with government officials, the Quebec government conceded and Marchand won the right to receive at-home care and live in his own apartment. 

Marchand hopes that his case will help others who, like him, want to live independently. He told CBC the current system is “biased” toward institutionalization, and wants to see a change in legislation and funding models of programs for disabled people. 

Marchand co-founded a co-operative called COOP-Assist, which he hopes can help connect disabled people with support for independent living.

Although Marchand now has authority over his day-to-day life, the government still has the ability to send him back to a long-term care institution if his health worsens or he doesn’t follow the terms of his agreement with the local health board. 

In Levack and Marchand’s cases, both of their provincial governments claimed their needs were “too complex” for care. But in winning the right to live in community, Levack and Marchand have proven that the type of care they require is not the issue, rather their respective provincial governments’ lack of will to provide support for them to live in community. 

In Linton’s opinion, “there are no care needs so complex that they require institutionalization.” She says the solution to cases like that of Levack and Marchand is to provide disabled people with support to live in community so that they’re not coerced into institutions. Alongside fellow DJNO organizers, she’s advocating for the nationalization of support for independent living so that disabled people can be provided with the tools they need to thrive. 

References:
[1]  The Institutional Remains: Transinstitutionalization of disability & sexuality  p.83

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