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Episode 4: Long-Term Care: “Our freedom cannot wait any longer

In memoriam of the 16,660 people killed by COVID-19 in long-term care institution

This episode was recorded on the unceded territories of the Algonquin Anishinaabe.  

Full Script

A note that this episode contains discussion of sexual violence, physical, emotional and mental abuse, confinement, and force-feeding.   Take care of yourself & be kind to each other.

Episode Description

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.

Cw: A note that this episode contains discussion of sexual violence, physical, emotional and mental abuse, confinement, and force-feeding.   Take care of yourself & be kind to each other.

Full Script 

Vicky: They basically made it sound like a dorm room for disabled folk. You know, and I was like cool!  I got here, and it wasn’t like that at all

Megan: No? You wouldn’t say you live in a dorm room for disabled folks?

Vicky: Oh hell no

Who do you think of when you think of long-term care facilities? Was it their decision to be there? Would it be yours?

Invisible Institutions Intro music

There are more than 13, 000 people under the age of 65 in long-term care. And they are probably not think of when you think about long-term care. Maybe because we’ve called them “old-folk homes” for a really long time! But it’s not like when you turn 80 you just magically end up in a long term care institution. It’s disability that’s the  prerequisite. And as a result thousands of young people with disabilities find themselves in long-term care institutions.

drones crossfade in

 

Hey, I’m Megan. I am a disabled researcher and writer passionate about understanding and making known the conditions of disability and institutions in Canada, and this is Invisible Institutions–– a podcast about the long history of disability confinement in Canada, and it’s ongoing impacts on the lives of people labeled with intellectual/developmental disabilities.

Heartbeat sounds

COVID-19 laid bare the risks of long-term care facilities, where more than 14, 000 people with disabilities, primarily elders, died from COVID-19. that is ten percent of all of the people who live in this system. A lot of people in Canada had their eyes opened to the conditions of long-term care during the pandemic. We know these institutions are filled with issues: for-profit structures, underpaid staff, frequent neglect, abandonment, disease and trauma, unnecessary early death to name a few. but how we think about long-term care and who lives in it needs to change.

More than 150,000 people live in long-term care in Canada, and get this, every single one of them is a person with a disability. Government’s see and use long-term care as a solution to the housing & care crisis. But instead of addressing the root issues, government’s have used long-term care facilities as a stop-gap solution, 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.

For five years, Patrick was one of them. Patrick is a young man with a developmental disability, and his story is one of many in the Ontario Ombudsman’s investigation into the crisis within developmental services in Ontario. Patrick lives in rural Ontario, where there is less access to services than in the city. But until he was 18, this was not as much of a problem-- he had friends and family living nearby, he went to school, he was in community. Of course services were not perfect then either, but I digress! Then he turned 18…  

[clock begins ticking] 

As time went on, much of his community, his friends and family, left to move into the city. He no longer had full days of support, and thus required more  services. But living in a rural area, there simply were not enough services to sustain his wellbeing.

This put a lot of formerly shared care onto his primary caregiver, his mom. She was having a hard time with the physical support work required as she aged.  Support like lifting Patrick into bed. So, he got put on the waitlist for residential developmental services. (ticking quickens) That waitlist? 23 years long. (call bell sound, like an alarm)

With no other options, at the age of 23 Patrick was institutionalized into a long-term care facility.

He struggled with his time in the institutions, which are sensory hell,

[call bell sound gets louder]

the loud sounds... fluorescent lights... and strong smells are really challenging.

And there is nothing to do! people get antsy, irritable, and impatient, I would too.

Patrick struggled in this environment, and would get upset with staff. In one incident, Patrick accidentally injured wheelchair. The staff responded by confiscating his only way of getting around. For four months, this meant he crawled on the hard, laminate floors of the long-term care facility. Without a wheelchair, Patrick was made vulnerable, and he was repeatedly assaulted by his roommate. It wasn’t Patrick that was vulnerable, it was long-term care facility & developmental service sector made him so.

I tell you this story is not because it is shocking but because it is not uncommon. Community and social ties are what help keep us safe. Institutions fundamentally tear you away from this.

For the last 60 years, we have institutionalized people with disabilities in the long-term care home sector.

loud door slamming

the first private, for-profit long-term care homes opened in Canada in the late 1950s. At that same time, public institutions for persons labelled with intellectual/developmental disabilities were bursting at the seams, they were overcrowded and under-resourced.

More than 3,000 people incarcerated in buildings meant for half that capacity. But instead of moving people out of institutions and into communities, they opted to reinstitutionalize thousands of people with more significant impairments into the growing private long-term care industry.

This episode, we’re not going to rehash the major issues, but I would definitely recommend checking out the Canadaland Commons series PANDEMIC to dive a bit deeper about long term care in this country.

Instead, we’re going to talk to young people with disabilities who are currently living in long-term care institutions about their experiences of COVID-19, autonomy,  freedom, food, and their dreams for their futures.

Tyson: I’m currently sitting outside, umm. I live at ActionMarguerite, it’s a personal care home. My name is Tyson Sylvester.

Vicky: Good morning! My name is Victoria Levack and I'm coming at you live from a nursing home in Halifax!

Megan:Hi Shoshana! Thanks so much for joining me today. Can you tell me where you’re calling from?

Shoshana: [00:15] I am an Indigenous disabled woman from Winnipeg. I live at Riverview Health Centre which is a long-term care facility in the southeast part of Winnipeg.

So I met Tyson in 2018 when he sat in a prison cell in the middle of Old Market Square, a popular tourist area in Winnipeg. Tyson was there in protest demonstrating how the province’s care system locked him out of his own life.

My name is Tyson Sylvester, i am 22. I put myself in a  jail cell to show that the disability sytem and the way it is working right now is a jail cell.

Before he turned 18, he had access to the services he needed to live a fulfilling life, access to the technology he needed to maintain a community, to game, and live life pretty independently. He dreamt of going to university to study computer science.

When he turned 18, this was all taken from him. The essential technology he needed to use his computer, taken. Locking him out of community, education, and life he created. The new services wouldn’t allow him to leave the house. His dreams of going to university were crushed.

The only service he qualified for--home care, were capped at a paltry 55 hours each week. Home care is really limited, and while you might technically qualify for 55 hours, often there is not availability for such, and the hours of service are limited.

For Tyson it meant he had to choose between breakfast and laundry, dinner or bathing. No one should have to make those choices, and for Tyson it meant he wasn’t safe. His only option, to live in long-term care. But Tyson fought this, he filed a human rights complaint in 2013 against Manitoba Health, Seniors and Active Living, Manitoba Families & the Winnipeg Regional Health authority.

Eight years later, the Manitoba Human Rights Commission settled his case & a piece of that was creating a pilot program for 30 adults with more complex disability support needs to live in community. But Tyson is still living in a long term care facility. I asked him what it’s been like

Tyson: absolute fucking hell.

Megan: What are your days like?

Tyson: I wake up in the morning and I wait for them to get me up because they don’t get us up on our schedule, they get us up when they have time. So, I have to let them know several days before if I have an appointment early in the morning cause I might not be up for it. And if it’s something important, then i could completely miss it.

Megan: And then what do you do next?

Tyson: I basically go on my computer and just kind of just sit and play games and stuff and try and not think about that place.

Megan: what games are you playing right now?

Tyson: it’s a lot of yugio and text-based games right now, and a game called second-life

Megan: That’s a good one!

Ok so speaking of computers, we need to  to add a caveat, these wonderful folks I have spoken with are in a privileged bunch in long-term care facilities-- those with internet access. It is hard to believe but the internet is NOT paid for in institutional settings,

And get this, people with disabilities who live in institutions don’t get typical access to disability income support. Instead, they get monthly “allowances”. These range across the country but start at $123 in PEI and peak at $370 in Manitoba. That means in lots of provinces where they are supposed to cover recreation, transportation, clothing, over the medication, can’t even cover the internet, and it's hard to believe but the internet is not paid for within institutional settings.

Tyson: No, but you can pay for your own. I’ve been fighting for wifi for three years now

if you're lucky your institution might have internet in common spaces.

Tyson: The only space we have wifi is the common room but they closed them down

But those very places were closed during COVID-19, which means that as we all turned to the internet for salvation during the crisis, people living in long term care facilities didn’t have this respite.

        

Tyson: Thank god i have a computer so I can check the website, but the rest of them, them are screwed.

We were basically locked in our rooms. I couldn’t even get a breath of fresh air. They thought i had covid so i was stuck in my room, I would be completely alone. And the staff said you have to wait for us to check in on you they have to finish their rounds so they can bundle up in PPE equipment and check in on you last.

        

        Megan: I’m sure that made for very long days

Tyson: Yeah, You can never get peace there. You always here pew, pew, pew, all day and all night. I mean there was a fund for plants, and that place never got plants.

Megan: No plants! I mean not even being able to be outside and then doubly not having any plants! 

Tyson: they literally got families to donate to make things better on the inside, and they didn’t

        Megan: Seems like such an easy way to make things like a sprinkle better.

But honestly, regardless of internet access, living through COVID-19 in these institutions was hell. Here’s Vicky,

Vicky:  it was like a prison. And I know that sounds hyperbolic, but it was. Because we weren't allowed to go anywhere, we weren't allowed to visit other floors, even, to go see our resident friends, because they wanted to keep us separate for disease control, which makes sense. But as a result, um, it was pretty lonely and a lot of us had some severe-- As someone with clinical depression, even though I was on meds and going to therapy, it was very, very tough. 

Megan: Vicky lives in Nova Scotia, things were a little bit better than harder hit provinces. But even still, restrictions prevented residents from even going outside for a breath of fresh air. And when things eventually did open up  a bit, the only way Vicky was allowed to leave her home was by her dad driving 3 hours into the city.

Over in Manitoba, things were more intense. Shoshana and I spoke in November, 2020 interview she reminded me that as a society, we will be judged by how we treat our most vulnerable members,” she says. “What do we want our legacy of the COVID-19 pandemic to be? That we failed our most vulnerable or that we did all we could to protect them?” Nearly a year later, here’s how she felt it.

Shoshana: The COVID-19 experience has been truly awful. Umm.. March 16th 2020, they locked us down. They gave us, like, 2 hours notice that from now on, we were gonna be allowed basically, like, no visitors whatsoever. They stopped our passes, so we weren’t allowed to leave the facility anymore except for medical appointments, like, at the hospital or like, a specialist’s office. And those were by medical transport and with an escort from the facility, not a designated caregiver.

Shoshana: And then, we weren’t allowed to have family drop off anything for us, like laundry, food, supplies, like anything, anything at all. Anything that we needed, we either had to buy from the gift shop or we had to arrange to have it shipped to us through the mailroom. They couldn’t even drop it off at the entrance and have it, like, brought up for us.

We weren’t allowed to leave our rooms, except to go to the shower room for a shower once a week. We weren’t allowed to use any of the common areas in the facility, so the cafeteria, the worship centre, the courtyard, the library, umm.. going outside. None of that stuff was allowed.

Not even being allowed to worship, shower, see family & friends or receive food from outside is cruel. And I’m going to pick up on that food piece, because everyone and I mean everyone talked ‘ve talked to in LTC about how much they hate the food.

I love food, it is a meaningful part of my day and social life. It is also critical for me as a disabled person to have food and be well-nourished it helps my symptoms,  my well being and life! We need food to survive, but it can also provide joy and pleasure. But in long term care institutions, pleasure is the last thing you get from the food…

Shoshana: he food is just terrible. It’s made in another facility in another part of the city, and they truck it in three times a day. And then what they do is they hold it in these thermalization units, so one half of the tray is cold and one half of the tray is warm. But it doesn’t really, it’s just makes the hot stuff get kind of like.. Soggy or like, overcooked. And then the cold stuff gets, like, lukewarm. And you get condensation under, like, the covers, because everything is contained in plastic.  It’s basically the same choices on the menu the same day every single week. It never changes. So like, it’s just the same old stuff over and over and over and over again.

microwave sound of spinning

Vicky the food is not good. It's not good. And none of it is fresh. It is all shipped in on big giant refrigerated trucks from the other end of the province. Um, so, we get stuff that was made the day before, and then they just heat it up in like a giant-- they call it an oven, but it's more like a giant microwave.

microwave end beeping

Vicky before anyone jumps down my throat  I am well aware that there are people starving, and I am grateful to have food on my table. But, the food is gross, bro.  half the time, we run out. You know, they don't send enough for everybody to be full. Very rarely am I full.

[Megan Long-term care]

Megan 1

22:50

Have you ever had a meal at a long-term care institution? In a hospital? They suck. Food service, quality and quantity have always been a major problem within institutional settings. The quantity of food, to feed more than 100, 300 or 500 people is really challenging to individualize meals for people. institutions bulk-purchase mass-produced food. Almost everything is frozen or canned.

.

In three of the five long-term-care homes where auditors in Ontario focused their efforts, food used to make meals was way past its best-before date, one serving liquid whole eggs three months beyond the best-before date.

Audit after audit in long-term care facilities have found that residents rarely get enough calories, yet the food has too much sugar and too many preservatives because province’s allocate only around $8/resident/day

Shoshana has some really important things to say about the intersections of food, culture and disability:

Shoshana not only am I Indigenous, but I’m also Jewish, so I keep kosher. And I’m also a fairly strict vegetarian. So my options are even more limited. And like one of the main reasons why I’m in chronic care is because I have a lot of problems with my intestines and with eating, specifically - it’s really hard for them to provide me with food that I can actually eat.

I’m suffering from malnutrition and I’ve been losing weight, and I might actually have to go back on intravenous nutrition called TPN because it’s getting so bad. And I think that if they could possibly, like, meet my dietary needs a bit better, I might be able to avoid having to go on IV nutrition, or at least not be on IV nutrition every single day of the week,

But the way it is now, like, I’m totally gonna end up on TPN because I’m not getting enough to eat, I’m not getting a balanced diet, and they just can’t meet my needs and we can’t meet my needs by supplementing by bringing stuff up, just because of the limitations here.

The institution's failure to meet Shoshana’s basic needs for nutrition is devastating and degrading. Why is this place, that’s supposed to care for people with disabilities debilitating them? The truth is, institutions cannot care for the diverse needs of hundreds of individuals, and they are not meant to. We have seen this for centuries, that’s one of the main reasons people with disabilities fought to close institutions in the first place.

it’s not just about food, but meals provide a good insight into how we treat people with disabilities. People should have choices in what they eat that honour diverse dietary and cultural needs. Instead institutions see food as a way to keep people from dying, but that doesn’t mean it doesn’t kill them.

People who live in long-term care have been dying from food-related events, particularly choking. This year won’t be different. In the Canadian Armed Forces report on their time in long-term care facilities during COVID-19 they detailed the frequent forced-feeding and drinking resulting in choking of residents. This force-feeding phenomenon is not new.

A staff at Huronia regional centre explained that force feeding was the worst thing to both see and do, staff were told by managers, if inmates wouldn’t eat their meal, they were to grab the back of their neck. Pull their hair back and shovel it in. (Broderick, 2011, p. 26). 

The Huronia Regional Centre was the first institution for persons labelled with intellectual/developmental disabilities in Canada. For more than a century, labelled people were incarcerated in the institution, subject to horrific violence, segregated from their community and prevented from starting families.

After decades and decades of activism, the institution closed for good in 2009. And Institutional survivors are crystal clear, they want the institution to be demolished. Instead, there are ongoing plans to build a long-term care institution on the grounds of the former site.

Imagine fighting your life to close the institution down, and then being reinstitutionalized into the place that has caused so much harm.

It makes me so angry to think about a long-term care facility being built on the grounds of the Huronia Regional Centre. When we can so cleary see the continuation of abuse, neglect and isolation in the ongoing institutionalization of people with disabilities.

We need to create new pathways forward, ones where people with disabilities are able to thrive, not just survive. We need new paths forward that allow, encourage and facilitate people with disabilities to live in the community.

But right now, people don’t have access to autonomy and choice, instead people are subject to long term care institutions, they are not a choice.

Vicky: we have no choice, quite often. Unless you are independently wealthy. Um you have no options um, it’s like the only reason i live here is because the government said “well this is the only place we can give you the care you require so you don’t die”. And im like, well I don’t want to die. So, you know…

And As far as this goes, like me living here. I will forgive them if they make the changes. But I will never forget what they did to me. Or what they forced me to do to myself.

OK so we know people with disabilities don’t want to be institutionalized. The disability movement rallying cry really is nothing about us without us, so let’s Listen to people with disabilities about where they want to live:

Tyson: Not in a facility, i would either chose a) a group home or b) an apartment. But not with myself, living with like one or two other people, but never living in a facility. I mean, I should have never been in there in the first place.

We all have unique ways of living. And not a lot of not all of us belong in a setting like that. I honestly just wish that there was more for people in my situation you know. And I’m hoping that in the future, people are able to live a more normal life than what is considered normal in a facility.

Vicky: Ok we’re going to fantasy land. I love fantasy land!

25:10 in an ideal world, in Vickopolois, which is what I’ve decided to call my ideal world, um, it, I would have a bachelorette apartment, with caregivers who basically live with me. Yenno I, part of their pay would be I will pay your board yenno, you don’t have to pay rent. And I will give you a, like a living, like a I’ll pay you but you don’t have to pay rent. But as part of that, not having to pay rent. You and I would have to sit down everyday and go ok what Vicky want to do today and work our schedules around so we would both get what we want to do.

Leaving Vickopolis, here’s Shoshana

Shoshana: Ideally, I wish that I could live in the community, where I could receive all the medical care that I needed, but in like a more home-like environment and not an institution. A place where my meals could be prepared fresh and like, tailored just for me, where the providers come on site for me and there’s like a nurse on site 24/7 and like a health care aide.

Where my friends and family can come freely and visit me whenever they want and if like, my husband wants to spend the night or like, my sister wants to sleep over, there’s like, space for them to be able to do that.

I don’t always feel like my needs are best suited living in a 388-bed facility. And to be quite honest, like, I have prison penpals and we write each other, and there’s more similarities between me and my living situation and the living situation of someone living in a prison institution. And to me, that just seems so wrong, like-- and just outrageous.

I don’t believe that prisons are the answer for punishing people for crimes, either. I don’t believe in institutions for anybody, for the disabled, for the mentally challenged, for people with developmental disabilities, for people with chronic illness, for seniors. Institutions are not suited for individuals. They are suited for, like, bureaucracies.

        

We deserve more than long-term care, we deserve freedom, autonomy and choice. Institutions don’t let this happen, and so we have to keep fighting.

Script - End Credits

reusable session: Megan group-homes-1 #3

[bara music underneath]

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 with production assistance provided by Kendal David. 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, Tyson Sylvester, Shoshana Forester, and Kendal David.