Lifetimes in Long-Term Care
In memoriam of the 16,664 people killed by COVID-19 in long-term care institutions .
More than 150,000 people live in long-term care in Canada, and every single one of them is a person with a disability. Government’s use long-term care as a stop-gap solution to the housing & care crisis, and one that is all too often used against people with intellectual/developmental disabilities. In Ontario alone, more than 2,900 labelled people are institutionalized into long-term care.
A note that this episode contains discussion of sexual violence, physical, emotional and mental abuse, confinement, and force-feeding.
Read the episode transcript below or by clicking on this link.
LTC facilities are highly institutional environments where people are unable to choose when or what they eat, how they spend their time, who provides their care, and who they live with. LTC facilities are residential institutions, designed to accommodate people with complex support needs who require 24-hour support. The shared characteristic of all LTC facility residents is underlying disability, not age.
Over the past ten years, provinces have made significant investments in the number of beds and facilities to accommodate the growing aging population. These investments in LTC facilities demonstrate an ongoing reliance on institutional forms of care for persons with disabilities.
Huge shout out to Tyson Sylvester and Amelia Hampton and the amazing folks at the Public Interest Law Centre (PILC) an independent office of Legal Aid Manitoba their “precedent Setting Human Rights Settlement”, which found barriers in accessing services for adults with complex disabilities.
There are a few different stats we reference in this episode. Data on COVID-19 in institutions was really minimal, a huge shout out to journalist Nora Loreto for her work documenting COVID-19 deaths in institutions. Some other reports to check out are the Ombudsman of Ontario’s Report Nowhere to Turn, where Patrick’s story is told, and the Ontario LTC COVID-19 Commission. Some of the research in this episode comes from policy briefs we wrote for the episode: Institutional Allowances, Internet Access & Long-Term Care Usage.
I write about long-term care and its discontents for Briarpatch magazine with Sophie Birks. We argue “by nationalizing long-term care, we’ll maintain the same system of confinement and control of elderly and disabled people, only now it’ll be under public jurisdiction.” Sophie wrote a great article for the Breach on LTC “Many people with disabilities have no alternative to living in institutions where their freedom is severely constrained. The pandemic has made their isolation worse”
Elsewhere, I wrote on the connections between LTC & prisons arguing that “Under our current carceral system much of the death and debilitation within these institutions was not preventable, because the carceral structure itself is homicidal. Abolitionist futures are the only path that will prevent the mass debilitation and death brought forth by capitalism-induced crises.” And here’s the article with an earlier interview of Shoshana and Tyson for Canadian Dimension.
This is one of the first episodes we recorded, maybe its not perfect but we’re learning!
Artists4Justice An art and storytelling initiative to advocate for residents and workers in long-term care facilities during Covid-19 and beyond.
COVID in the House of Old: One of the first public commemorations of the pandemic, COVID in the House of Old brings stories from a national humanitarian crisis to Canadians and asks them to take action.
DJNO is calling for alternatives to long-term care give that the current system isolates, segregates, and warehouses disabled people and elders. We believe that the maintenance of any form of institutionalization, regardless of ownership, signifies an ongoing investment in institutional models of “care” that put disabled people and elders at risk.
Seniors For Social Action Ontario are older adults from across Ontario who are demanding change to the ageist attitudes and policies that have led to the unspeakable conditions and high infection and death rates in long term care institutions that came to light during the pandemic but have existed for decades.
Invisible Institutions was created by me, Megan Linton, with support from People First of Canada & Inclusion Canada’s Joint Task Force on Deinstitutionalization. Audio recording by Megan Linton. This episode was advised by the Joint Task Force on Deinstitutionalization. Audio post-production and sound design were by Helena Krobath, and our theme music was composed by Bara Hladik. Special thanks to Vicky Levack, Shoshana Forester Smith, and Tyson Sylvester!
Works Cited & Consulted
Mann, A. (Host/Producer). (2020). Commons: An emergency season: PANDEMIC [Podcast]. Canadaland. https://www.canadaland.com/podcast/an-emergency-season-pandemic/
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Armstrong, P., & Day, S. (2017). Wash, wear, and care: Clothing and laundry in long-term residential care. McGill-Queen’s University Press.
Linton, M. (2020, November 18). ‘Warehouses like this are not the answer’: Exposing the crisis of long-term care in Manitoba. https://canadiandimension.com/articles/view/warehouses-like-this-not-the-answer-exposing-crisis-long-term-care-manitoba
Linton, M. (2021, January 14). On prisons and personal care: Disabled confinement and COVID-19. Winnipeg Police Cause Harm. https://winnipegpolicecauseharm.org/blog/on-prisons-and-personal-care-disabled-confinement-and-covid-19/
Ben-Moshe, L. (2020). Decarcerating Disability: Deinstitutionalization and Prison Abolition. University of Michigan Press.
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Dubé, P. (2016). Nowhere to Turn: Investigation into the Ministry of Community and Social Services’ response to situations of crisis involving adults with developmental disabilities. Ombudsman of Ontario. https://www.ombudsman.on.ca/Media/ombudsman/ombudsman/resources/Reports-on-Investigations/NTT-Final-EN-w-cover.pdf
Glowacki, L. (2020, February). “You’re losing the right to choose”: Changes to housing wait list panned | CBC News. CBC. https://www.cbc.ca/news/canada/ottawa/housing-waitlist-ottawa-1.5457620
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Ouellette‐Kuntz, H., Martin, L., & McKenzie, K. (2017). The Risk of Re-Institutionalization: Examining Rates of Admission to Long-Term Care Among Adults with Intellectual and Developmental Disabilities Over Time. Journal of Policy and Practice in Intellectual Disabilities, 14(4), 293–297. https://doi.org/10.1111/jppi.12215
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Rossiter, K., & Rinaldi, J. (2018). Institutional Violence and Disability: Punishing Conditions. Routledge. https://doi.org/10.4324/9781351022828
Struthers, J. (2017). “Home, Hotel, Hospital, Hospice: Conflicting Images of Long-term Residential Care in Ontario, Canada,” in Sally Chivers and Ulla Kriebernegg eds., Care Home Stories: Aging, Disability, and Long-term Residential Care, transcript Verlag, 2017, 283-302. (pp. 283–302).
Suttor, G. (2016). Taking Stock of Supportive Housing for Mental Health and Addictions in Ontario. Wellesley Institute. https://ocul-crl.primo.exlibrisgroup.com/permalink/01OCUL_CRL/1gorbd6/alma991022730365205153
Sylph, J. A., Eastwood, M. R., & Kedward, H. B. (1976). Long-term psychiatric care in Ontario: The Homes for Special Care Program. Canadian Medical Association Journal, 114(3), 233–237.