Episode 6: Remnants of Institutions Past: Group Homes

if you believe that people with disabilities should be put in institutions, then you get your ass in an institution, and you tell us how you feel the next day! 

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.

In Canada, institutions for people with intellectual/developmental disabilities have never closed, they have changed faces and names, but have remained responsible for the segregation and isolation of labelled people. Today, group homes are the primary forms of supportive housing for labelled. And while not all group homes are institutional, all group homes have the potential to become institutions.

When I started meeting group home residents, and their families and friends, and learning almost everything I possibly could about them, it came blaringly obvious just how institutional these settings are.

 When I started meeting group home residents, and their families and friends, and learning almost everything I possibly could about them, it came blaringly obvious just how institutional these settings are. You see, Often, group homes are not as homey as their name implies. These are places where there is intensive regulation, huge power imbalances, and limited opportunities for decision making.

People should have the right to choose where and who to live with.

This has been a central part of the 50 year fight for deinstitutionalization for institutionalization.

[protest sounds] What do we want? Free our people! When do we want it? Now!

group homes or congregate housing – sometimes they have different names – make up the majority of developmental services funding. Which makes group homes the default housing for so, so many people.

Alongside the disproportionate funding for group homes through developmental services, there is a housing crisis in Canada.

Where more than 100,000 people labeled with intellectual or developmental disabilities.  with acute housing need in canada.  

So before people even get to make the decision about if they want to live in a group home, policy decisions were made that labelled people should live in a group home.

For many people with intellectual/developmental disabilities, they are only offered a bad, or a worse choice:

Nursing home or continuing care facility?

Emergency shelter or prisons?

Forensic psychiatric ward or group home?

Group home or street?

These are not decisions, and if people don’t make them the crown will make this decision for them.  

And even though choice is already constrained to group homes, there are incredibly long waitlists to get into a group home. In some places, the estimated wait to get into a group home can be up to 20 years.

This shortage makes it hard or impossible to decline a group home – even if that home is miles away from family and friends, even if that means having 3 roommates, and 25 housemates.

Even if that means you are living in a Christian group home while practicing another faith.

People should not be told, oh you’re gonna live with Joe. Meanwhile, you’ve never even met Joe before. Or maybe you may have not, you may have had different interactions with Joe.

And these realities, of waitlists and disruption and lack of choice, position institutionalization as a pervasive threat to the lives of people labeled with intellectual/developmental disabilities. For instance, COVID-19.

People labeled with intellectual/developmental disabilities have a 2-6x higher mortality rate than those without the label. This risk is increased even further in congregate settings like group homes,

[news anchor] Outbreaks have been raging through another population today, the developmentally disabled

Take for for example, Public Health Ontario’s suggestions for group homes:

“in shared bedrooms space should be increased in bedrooms to at least 2 meters apart. If this is not possible, consider different strategies to keep residents apart, such as placing beds head to foot or foot to foot.”

The denser and larger settings have higher risk of covid-19.

In the spring of 2020, one of the first wide scale COVID outbreaks in Canada happened at a group home in Ontario.

[news footage] Several thousands of residents in group homes have contracted the corona virus, hundreds have died. The true number is like much high.

At the Participation House in Markham, all 42 residents were exposed and infected with COVID-19, six people died. In many group homes residents were isolated in their shared bedrooms as COVID precautions and prohibited from accessing shared spaces like living room and kitchens.

This made it evident just how large and institutional group home can be!

that group homes are much larger, and much more institutional than we have been led to believe.

Now how group homes became the dominant form of housing for people labeled with I/DD means we need to GO BACK.

Group homes were born in the 1960s and 1970s in response to the growing movement of deinstitutionalization sweeping North America.

They were seen as a reimaginings of service provision for people with disabilities, as they were supposed to be smaller, community-based settings. And this was really radical change from the norm then, which was 2,000 person large-scale institutions that were really far outside of cities.

As institutions continued to close,through the 1970s until today, more and more group homes opened. ,

A lot has changed in the last 50 years, including our understanding and the composition of  group  homes.

 Over the last 30 years, governments really promoted larger ownership, because it’s cheaper.

See group homes are funded and regulated provincially, but operated by third parties.

 So that means that many larger non-profit organizations operate more than one group home.

Group homes also began tying together support -- like employment support -- and residential services. That means that the same person who provides your housing provides your community support services or supported employment

So what makes a group home an institution? The thing is, our policies never got past the desire to segregate and institutionalize people with disabilities at the lowest cost possible .

This is the based on the belief that the only way to provide support and housing for people with l disabilities is to remove them from their community, place them in an isolation environment with only other people labelled or workers, and provide them support in that same environment.

This is Kory, you heard him at the beginning.

My name is Kory Earle and I'm calling from outside of Ottawa, Ontario, west of Ottawa - Carleton Place, Ontario.

He’s the president of People First of Canada and has lived through the group home system

So great to be here

I think for a lot of people, they think that the time for institutionalization is over. Which of course we know is not true. So I am wondering if you can talk a little bit more about where people are institutionalized today?

Institutions are more than a big building, they simply are. In fact, it’s a state of mind, it’s a state of conscious.

We don’t need smaller institutions, quite frankly. Just like we don’t need large ones. The whole idea is not to turn around and say, “Now that we’ve closed--now that we’re on the path to closing large institutions, we’re going to open 500 small institutions.”

They’re just smaller. Different size. But again then we’re segregating people from the community.

And people might want to live with different roommates But at least we get, to make those choices. Like we get to make those choices, we get to make those decisions.

And these are real stories that are impacting every single day when someone makes a call and says, “We have a bed for you. We don’t have a home for you. We have a bed for you.” Now if you think about that for one second, if someone called you up and said, “We have a bed for you.” How would that fundamentally make you feel? I know I would get a horrible feeling in my stomach. So now I’m used not as a person, I’m used as a number.

It would make me feel LIVID. A bed. Not a home. And this is so often how we think about institutions, in terms of beds as opposed to homes. And once  we think about things in terms of beds, numbers,  efficiency, we forget about the human beings.

And these realitie, waitlists and disruption and lack of choice, position institutionalization as a pervasive threat to the lives of people labeled with I/DD.

This is about peoples’ lives where they should be able to wake up and say, “Wow, look at my home! I have pictures up. I feel like this is my home. Why? Because I’ve been able to play a part into making this my home.”

Whereas being in the institution, people are put into a home where it’s like, “OK, you could be shipped off to somewhere else.”

And there’s so much things that go on in those homes versus someone turning around and having the keys to their place.

Megan does Group Homes #3

You certainly don’t get to make the choices about the furniture, the location, the access to services, who runs it, who manages it, who operates it, the roommates, housemates, the food, the staff and the list goes on.

Megan Does Group Homes #3

[RE-ORDERED as follows:

Following 3 years of investigation, this past summer 2 senior managers of a large scale developmental services agency, who operated a bunch of group homes, were suspended from the Nursing college of BC as a result of “unprofessional conduct of a serious nature”]

The suspension followed complaints from three parents, a former employee and the college itself.

These complaints demonstrate some of the ways that group homes make people vulnerable  

You see, group homes have the legal ability to restrain people labelled challenging and put them in isolation setting. They have the ability to remove visitors and never let them in again, and they have the ability to restrain people using medication.

 And in each of the cases, parents were prevented from advocating for their family members, because group homes have the ability to decide who is let in. Family members, and other social or intimate bonds are often on the frontline to prevent abuse from happening. In these cases the removal of family from these group homes allowed for ongoing violences to continue without accountability.

The complaints are pretty horrific, so i just want to give you a quick warning.

As reported first by Bethany Lindsay for the CBC. During their time in group homes  the college found several horrific accounts. One, a twenty-four year old suffered permanent scarring to his corneas  and significant mental health deterioration. This is not care, this is medical violence.

And then, Katrina Lavery died. Katrina was 21-years-old, and living in the GHS group home. While she was struggling but during this time, her mom was prevented from seeing her, despite being her best friend and best advocate.

The senior managers labelled her mom as difficult, aggressive, challenging, simply for advocating for the best interests of Katrina.

And without her mom’s support and advocacy Katrina’s health deteriorated quickly, but those managers prevented staff from calling the ambulance. So her stomach stretched, her temperature continued to increase, and the society did nothing.

Eventually, Katrina was admitted to the hospital, where they found a severely untreated bowel obstruction. She went through surgery, after surgery, but the harm was done. Katrina died. At the heart of this, is ableist violence.  Denial of Katrina’s right to choose and to access family and supports

No one should experience violence or neglect, especially not in a place you are supposed to call home. We all deserve safety, care and access to community.

Because for too long, we have understood group homes as places that aren’t political, as places that are simply okay. And there is a lot of ableism underwriting that, mainly, the assumption that if you are a person or organization helping people with disabilities you are amazing! But, just like we have seen in the LTC sector,,[These] power dynamics,: Mean that people can be put in very vulnerable places

Group homes, no matter their size, have the potential to be institutions. So I am going to introduce you to our next guest.

Jihan Abbas has been involved in the disability movement for several years and has extensive advocacy and professional experiences related to access, exclusion, and inequality. She currently teaches at Ryerson University and is a research associate at the Disabled Women’s Network of Canada.

Thanks so much for joining me today! You have written about the histories of disability incarceration in Ontario, such as at the Huronia Regional Centre, a former large-scale institution that, in its prime, incarcerated thousands of people with disabilities. Can you tell me about the current forms of disability confinement?

Yes, thanks so much for having me! I think that it’s important to think about that continuum of confinement.

And I think a lot of people are under the impression that forms of institutionalization are a thing of the past. And thinking this way sort of obscures current forms of confinement and how current policies are upholding them.

So, really, for me, confinement persists because people with intellectual disabilities still don’t have choice or control in their lives.

I am going to integrate a really helpful definition here, because it helps us reframe our understanding of institutions from those giant places, towards that continuum that Jihan talks about. Ok here we go:

An institution is any place in which people who have been labeled as having an intellectual disability are isolated, segregated and/or congregated.

An institution is any place in which people do not have, or are not allowed to exercise, control over their lives and their day to day decisions. An institution is not defined merely by its size.”

I think a lot of these sites operate in similar ways that these historic institutions that we’ve studied do. You know, people are surveyed, they’re controlled, they’re punished in similar ways for sort not following those rules, which are often deeply ableist. And once you’re inside these sites or these systems, even within the community, for any number of reasons, you’re more prone to sort of systemic forms of ableism. And I think it’s more difficult once you’re in the system, to get out, if that, answers your question.

Megan to add:

When Jihan talks about punishment here, I am just going to spell that out a bit more.So, one of the main forms of harm in group homes is restraints.

Physical restraints are anything you use to limit someone’s mobility, whether that be holding them in a specific way or using a type of restraint equipment like handcuffs. .

And a chemical restraint, it’ s a type of medication used to sedate someone.

These regulations state that they do not consider these punishments. But that doesn’t mean that the people that experience them don’t think of them that way.  

Now it is integral to remember that while developmental services label isolation settings as part of therapeutic responses, the United Nations considers forms of chemical and physical restraint, and prolonged isolation as torture used against people with disabilities. They specifically point out the US and Canada as country’s utilizing this against their citizens, in direct opposition to their rights.  

The use of restraints and forms of isolation within group homes are really pervasive issues. On average, between 2008& 2013, in Ontario there were almost 3,000 instances of physical restraint use, there were 194 deaths, and 120 missing clients.

Let me be clear, restraints and isolation are not responses to disability. They are used to control people with disabilities and they have had fatal consequences. 

And that risk, is not evenly spread. Marginalization really impacts risk of institutionalization. The last  30 years of research suggests that women and girls and are more likely to be institutionalized.

The Report by DAWN Canada, More Than a Footnote digs deep into this, we’re gonna have it linked in the show notes.

You write in your research that there is a risk and threat of institutionalization of women labelled with intellectual disabilities. This is such powerful language and I’m wondering if you could explain a little bit more what the particular risk is of institutionalization?

Yeah, absolutely. I think the risk of institutionalization is always present for disabled people. And I think especially if we take a cross-disability perspective, those with intellectual and mental health disabilities. And these bodies are really surveilled and policed in different and aggressive ways.

At every stage of the life course if you have an intellectual disability, there is a threat of institutionalization. So this can start when children are very young, the way the education system works and specifically the way that schools use police. Things like zero tolerance policies that we know disproportionately impact disabled and racialized youth, and they start to create this school to prison pipeline.

Or, you know, if we move through the life course, increased surveillance and punishment from child protective services for disabled parents, to then congregate and long-term care for young adults, and a lack of support for people with disabilities as they age in the community. There’s really always, at every stage of life, the increased threat of institutionalization for people with intellectual disabilities.

So, for me, it plays out throughout the life course. It’s always, I think, hanging over people. It’s always a threat that it’s there, either if they don’t conform or if there’s a lack of supports, which we know is a systemic issue. So, I think for women and girls labelled with intellectual disabilities, this risk is incredibly real and it’s something that persists in every area of their life across the life course.

This life course piece is really important and it addresses one of the major challenges, that we are setting people up to be institutionalized over the course of their entire lives. It’s like we’re putting people into  a maze with only dead ends, with exit doors that are actually just another door to institutions.

Kory told me a bit more about how segregation and institutionalization played out in his life course...

I went through an education system where I was segregated. That didn’t prepare me for community. That prepared me for segregation.

So, when I eventually got out into the community, I went, “Wow, there’s a whole new world. There’s absolutely a whole new world out there.” And that really made me have a whole lot of respect-- I didn’t get that from an education system, or from family, because some of the family, you know, shipped off the other way. I got that from actually coming out to community and realizing that there was more to, more to being part of the community than there ever was. And so many people with intellectual and developmental disabilities will tell you the exact same thing.

We rely on institutionalization and segregation at every step of the way, from the education system, through our services and employment models to our current housing system. 

Current and past policies have really framed it as people with intellectual/developmental disabilities are at risk, and as a result this makes much more paternalistic policy.

So policies that are presuming that someone can’t do something.

The thing about risk is it’s also how we rationalize that people with disabilities should be institutionalized, surveilled, segregated.

it’s OK for us to take risks. It’s absolutely OK for us to take risks. Like, for people to turn around and say, “Oh, well, you know, if they take a risk, this could be a big jump.”

Well, hell! So what? If I take a risk, and I knock down-- I expect people, just like anyone else in the community, lift me back up. But don’t treat me any differently than someone else down the street. Don’t treat me like I’m a 4 year old. Treat me as a community and society contributing member.

So, you wrote an amazing article “Freeing Our People” with Natalie Spanuolo. It’s one of my favourite articles. And in it, you ask the question “Why do we continue to keep people with intellectual disabilities in institutions?”

And I was glad to do with Natalie because I think that shed a lot of light, because it’s time that we don’t hide from the past. It’s time that we acknowledge the incredible hurtful and horrible things that have happened, you know. And I think what we need to do is talk to people who experience the horrifying things that happened in institutions.  the survivors that have gone through  horrifying stuff. Ask them! Because I can guarantee you, their question isn’t, “How long are you going to stay here?” Their question is, “When the hell can I get out of here?” To put it politely.

And I think having this frank and open conversation, we should no longer talk about institutions, rather we should talk about: what does a community mean to me? What does a community mean to Joe down the street? What does a community-- and I can guarantee you, the only time you probably won’t get people saying that they want to go into an institution is because they don’t know any difference.

Because they’ve been so used to being institutionalized that they don’t know there are choices and options out there for them. They don’t know that they have a right! Because those rights have far too often been taken away. You know, if I was put in a group home for decades, I wouldn’t know that I could be, that I could have my choice to be able to go and live with someone. I wouldn’t know that! And I think we have to change that.

so how do we change that?

Well, fundamentally, it starts with society. I think far too long, far too often, society has categorized us as one side of the issue, and not being part or being included in society. As society, there’s been a lot of judgement and a lot of labelling on that. People with intellectual and/or developmental disabilities need to be part of the community and not institutionalized. In an actual community setting.

And I think that starts changing not just society, but organizations that provide the services to people. Having those conversations. And I think we need to get the families on board. Because some people that have families face the challenge of being institutionalized because that’s what their families know, some of their families know, and some of their families think that they know what’s best. Well, I can tell you right now, as someone that has lived experience, no one knows what’s best for me, except what I know is best for me!

it’s about, “How can I support you to have the best life to live in the community?” And by doing that in society, or in the different settings, it’s being set up for failure, it’s being set up for failure on the terms that we’re going to hide people and say, you know, you should be who you are, and you should be the forefront and be part of the community, whether it’s recreation, whether it’s anything.

So what is a community? What form of community do we need to help disabled people flourish? Kory what;s community meant for you?

So, look, we all need support regardless of whether you have a disability or not. But being part of the community means that whether you rent a home, whether you own a home, that you’re also part of the recreation and activities that go on in the community. That you can go to Tim Horton’s, not necessarily with people with disabilities, that you can go to Tim Horton’s with your friends, with your family. A community means that you can, you know, you can call up at 10 o’clock at night time to one of your family members, and not having to worry about that you have a caution on when you can use the phone.

6:20 Being part of the community is essential for all of us! When I say community, what I mean are the people, places and things that support me to live, and in turn, the ways I support the many people, places and things to live. 

Being part of a community is central to my wellbeing as a disabled person [the actual line in the recording is different]. Like I need a dishwasher because i have arthritis & my hands don’t work that well. [sorry to all my broken plates]. And it’s just-- we view supports so narrowly in our society, and don’t see how we all need support that we require to live in community. Things like a dishwasher, things like family members to drive me to the hospital or doctor. Or, bringing my neighbour bread, because they're the best.

You see it’s all part of being in a community, supporting each other, helping each other survive.

Megan Does Group Homes #3

A really big part about making this podcast was exposing these realities to people, so that we can all understand this risk, and how fricken bad are current system is! I was so grateful to speak to Jihan and Kory to really lay out the stakes for us in terms of the risk of institutionalization.

J: Well, I think, first of all, it’s important for us to take the lead from those with lived experience. And those with intellectual disabilities have been clear the kinds of things they need, you know, poverty reduction measures and things like that. I hear a lot of people talk about deinstitutionalization as if it’s done and it’s a thing of the past. But for people with intellectual disabilities, this isn’t the case.

And I think, right now, if we look at some of the exciting things that are happening and we, say, look at disability justice and that movement, I think it gives a really good framework for how we can have cross-solidarity and how we can work across movements and how I think we can be more inclusive in our activism.

Because, as I’m sure you know, oftentimes when we advocate for things, policies come through in a way where a lot of people are left out. And I think those intersections are important, that intersectionality piece, but also that cross-disability piece to ensure that those with intellectual disabilities aren’t left out of our advocacy.

K: Well, I think people who can also be allies and be supporters and in supporting and encouraging people with disabilities ot be part of the community. Invite us into your home. We’re not that bad, evil people, what people oftentimes have labeled us. We’re people that want just what you want. We want hope. We want opportunities. So I ask, have open arms and open minds as we engage in this.

Because as society, and as people who are not labelled with disabilities, you could be the first step to making this a reality for so many of us. Who just want to feel that we’re valued. That we’re welcomed.

Is everything perfect? No. But nor is people who don’t have disabilities either. So we need to remember that. We need to remember, as a community, that that’s change our way of thinking of decades, of old thinking, and change our way of new thinking. And that is that that people with disabilities will always be part of the community, regardless of where they live in the community, that we will support them without labelling them and without judging them. We will welcome them into our community with open arms and open minds. And, we will listen and we will understand the struggles of the past. But we renew our commitment to say that we will make sure that, as long as you are part of our community, that you will never be faced with this again.

Megan: It’s gonna take a whole lot of advocacy and a whole lot of community building, we can have communities filled to the brim with people with disabilities, and those communities are going to be a whole heck of a lot stronger, and a whole heck of a lot more beautiful.  

as supporters, you have a whole lot, you could be very powerful and impactful on making sure that we’re part of the community. And you can demand more from governments on our behalf.

And you can demand more from organizations who fundamentally support the services that exclude people rather than include people. And you can, and you can have our backs along the journey. This is a journey and this is, this is a journey of goals and opportunities for people with disabilities. People with disabilities just want their lives back. They don’t want any more of the segregation and any more of the past of wrong doings. They just want their lives back.  And as a community, I don’t think that’s a whole lot to ask for.

And I say all that because I fundamentally, the times are slightly changing, but I believe there is yet better days ahead as we go into to ensure that people are part of the community. And as long as we’re around, we’ll continue to advocate for that because it is fundamentally the right thing to do.

If we don’t have these discussions today, then the future is in limbo for people. We need to have these conversations. And we need to know that generations ahead know that we have fought hard for people to be part of the community. Thank you.

[Insert protest clip, freedom tour]

What do we want? FREEDOM; When do we want it? NOW

We covered a lot of ground in this episode. And I hope it is clear how urgent the need for change is. I know these conversations are shocking, devastating and horrifying, but I hope they are not immobilizing, my hope is to mobilize you. Because the truth is, we have the means, research and so so much evidence that would increase the quality of life for people with disabilities drastically.join me for the journey!

GOOSE BUMPS. Going to leave it there for today

Script - End Credits

(bara music underneath) 22:00 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 Bethany Lindsay for the amazing reporting on the Garth Homer Society, and to Kory Earle, Kendal David, Jihan Abbas,  Kit Chokly and Erika MacPherson for providing the Freedom Tour Audio, talk soon.  

End 22:40