The Agenda with Steve Paikin (Audio) - Challenges for Cultural Long-Term Care

Episode Date: June 26, 2024

Cultural long-term care homes have provided elder care for seniors steeped in their language, diet, and cultural traditions. But recent legislation has left these homes grappling with an influx of new residents from outside those cultures, and are seeing what they say are serious consequences. How can care homes that cater to specific culturally needs be preserved in Ontario?See omnystudio.com/listener for privacy information.

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cultural traditions, and diet. But recent legislation has left these homes grappling with an influx of new residents from outside those cultures, resulting in unforeseen and serious consequences. Joining us now to unpack what these changes mean for the long-term care sector, we welcome Dr. Samir Sinha, Director of Geriatrics at Sinai Health and the University Health Network. Stephen Harrison, Chair of Advantage Ontario and CEO of Tri-County Mennonite Homes. Alan Miyusi, Chair of the Ehatare Retirement and Nursing Home

and Chair of the Estonian Relief Committee. And Alexandra Gugeszchuk, CEO of Copernicus Lodge, which deals with the Polish community. And we are very grateful for the four of you coming in tonight to help us out with this conversation here. Stephen, I'm going to go really back to first principles here and make no assumptions that people know everything they need to know about this sector.

So just tell us, long-term care homes are what, and they appeal to whom? Long-term care homes. Long-term care homes in Ontario are funded predominantly by the province of Ontario. Advantage Ontario represents not-for-profit municipal homes. But a long-term care home is a place for seniors, and seniors is a loose definition.

It's not just like the Shoppers Drug Mart definition of 55 and older, but certainly we have younger individuals who have complex or medical needs that are served there. They are a home, not a facility, but a home. And it is a place where people live for years sometimes, receiving spiritual, psychological, social, cultural, clinical care. It is a place where services are offered that are not at a level of an acute care hospital, but more along the lines of clinical care and supports that are needed for seniors, predominantly living in the community.

Dr. Sinha, follow up on that. Is that to suggest that basically everybody who lives in a long-term care home is sick? Not necessarily sick, but have higher needs than a typical older person living in the community. So again, we think about long-term care homes as part of a continuum of care. The idea that there are people who are older living independent and healthy in the community, those who might need some more home and community support services, and then those who can no longer live independently in their own homes. And this is where a long-term care home becomes an option, where you have 24-hour medical care, 24-hour care available. You have medical care that's made available as well. But these are often people, if you want a flavor, often 90% of the folks living in these settings are living with a cognitive impairment.

66% are living with dementia. And many of them are living with multiple chronic health conditions. So is this essentially where you go to end your life? Not necessarily to end your life, but usually the typical length of stay in a long-term care home in Ontario today is about 18 months. So these are traditionally where people are living the last months and the last years of their lives. Okay. Alexandra, we mentioned off the top we're going to be focusing on cultural long-term care homes here.

How are they distinctive from a regular long-term care home? Of course. So cultural homes, they cater to the unique traditions, dietary cuisines, and general activities catered to a specific population, which is unique. There is a focus of that linguistic ability to speak in your language, to receive services, and really support from individuals that are able to understand you. And that's key, because our seniors that come to Copernicus Lodge in Toronto are of Polish descent, and they're able to speak Polish and interact and feel that they are part of a community that is understood.

So English is not the first language at Copernicus? We speak English, but the majority of our staff are able to communicate in Polish. And I do tell individuals that I speak more Polish at Copernicus Lodge than I do English. So that speaks to the community that we do serve. What about your places? How does it work there? Same thing. We cater to the Estonian Canadian community. We've been doing that for over 40 years now. And I think it's a really good, strong public partnership that we've had

with the province for many decades, probably one of the strongest ones, because we're able to take care of Ontarians with cultural backgrounds that need specific needs. We just talked about how many dementia cases we take care of. You know, if anybody has had a relative or a loved one with dementia, which I had my uncle, it's difficult. But the one thing that they do is they revert back to their mother tongue. So to take away the tension,

to help them just be more comfortable and to be more alert, going back to mother tongue is very important. I think it's a benefit that we bring to Ontarians by being able to do that on a daily basis. And give us a sense of the range of groups that are appealed to in this sector. Well, Alexander and I are part of a sort of a rebel group of about 16 or 18 homes right now. Rebel? Why are you rebels? We're rebels in the sense that we're trying to get back our own domain from what happened pre-COVID. We seem to have had a very

strong relationship with the province. We were able to place our own community members in our homes. But since COVID and a lot of the crisis cases in hospitals, that hasn't been, you know, and a lot of the crisis cases in hospitals, that hasn't been, you know, what we've been experiencing the last three, four years. So it's been difficult. We all hope that we can return to that. But the range of groups is what?

I'm going to say 50, 60, 70 even. I mean, I'll go back to something. A friend of mine in the community just sent me an article back from 1965, the month I was born. And literally, you know, 59 years back from this very month, communities came together. Estonians, Latvians, Lithuanians, Polish, Ukrainians, native peoples, Francophones went to the went to the parliament and asked for support to start cultural homes. This was in 1965. So this is not a new thing.

This is not a new thing. Dr. Sinha, as you consider the range of different kinds of long-term care homes that are out there, the culturally focused ones, how significant a chunk of the overall system are they? So less than a third of our homes in Ontario are ones that are run by municipal governments, but also often ethno-cultural Finnish, for example. We have multiple Finnish homes in Ontario. And this is a really important, you know, piece of the care because about two-thirds of the homes are generally owned by for-profit organizations that generally cater to anybody, right? And, of course, there are people who say, look, I'm happy to live in any sort of home that will just meet my needs. It's convenient. That's all I want. But there is a significant group of Ontarians who, just as my colleagues were saying, especially when you're living with cognitive impairments, you're reverting back to your earliest memories.

Those creature comforts, those languages, those foods and that. And when you're thinking about caring for people with dementia in particular, that really becomes integral to providing good care. So it's very unique in Ontario that we created this. It's rare that we have this level of support in Canada for homes like these. But right now, as you said, that these homes are under threat. Stephen Harrison, is there evidence that in fact, older people will do better than they might otherwise do if they're in a culturally specific long-term care home. Absolutely. There's ample evidence out there on the psychosocial side of the equation

to demonstrate that as individuals revert back, particularly, and I can't emphasize this enough, Dr. Sinha has mentioned this, we are seeing a very rapid rise in the number of individuals with forms of dementia coming into seniors care. Those individuals in our home, which is founded by a Mennonite, a group of Mennonite churches just outside of Kitchener, 50 plus years ago now, those individuals are reverting back to Dutch and German from a language perspective. They are looking back to fond childhood memories of

we're a farming community. So they're looking back to how to integrate those components into their life. And for us, it's about how we bring those supports to them to create better well-being for them. You know, the last 18 to 24 months of someone's life is spent in long-term care right now, particularly with the heightened levels of crisis placement. Those are the pieces that people are looking for when families as well, but also the residents when they're coming into care. The challenges that we're facing right now, of course, is the equation is shifting.

And so with changes in regulatory and legislative frameworks in Ontario, we are seeing a dramatic shift in the number of individuals who are in our home who actually hail from those original cultures. Okay, let me pick at you. You've opened the door and now let's go through it here. Alexandra, there is a law, a new law, that the Ontario legislature passed, oh I don't know what, a year and a half ago or so, which changes things a lot.

It was called Bill 7. And I wonder if you could give us the Coles Notes version of what Bill 7 is and how it has affected what you do. Of course. So Bill 7 highlight prioritizes emergency placements from the hospital to alleviate alternate level of care beds that are occupied by residents that would be better suited in long-term care. So that unfortunately prioritizes those placements over culturally appropriate ones. Over the last year, so I would say from January of this year up until present day, Copernicus Lodge has had 40 new admissions from ALC beds, 20 of which have been non-Polish.

So half of them are non-Polish. Half of them are non-Polish. Has that been a problem? It has been a challenge and particularly a challenge for the non-Polish residents coming in. They don't necessarily feel like they've integrated into the community that has been founded to serve a Polish population with a distinction of Polish programming. Because they don't speak the language or what? They don't speak the language, but they also are not familiar with the tradition. So, of course, we try to integrate and provide those services, but that takes away from our day-to-day provided services to the Polish residents.

And we don't have the unique funding model to support everyone to meet all of their needs. Particularly, you'd walk into the home and you'd say it feels like you're walking into Poland. Everyone is speaking their native tongue. They're reverting back to what, you know, how Alan mentioned, they're reverting back to that native language. And oftentimes we see our residents that do not remember their loved ones, but they feel comfortable and understood. And they've raised that in terms of their experiences. And I just want to pick up on that point because I think Alexandra's

skirting around the really difficult part. She's being diplomatic here, right? She's being very diplomatic, which I bought her for. But I think what a lot of people don't realize is we're not-for-profit homes. So we don't have the same kind of reserves in our economic model to say, okay, well, we're going to just add, you know, 15% of the food this month and, you know, and we'll take it off the residents who are with us. We're not for profit, which means our mandate's a little bit different. And we get subsidized. Yes, we do get paid a lot by the government, but we also get subsidized by our communities through fundraising events. And so you can imagine that, you know,

we went into the business 40 years ago telling our communities that when you need a bed, we'll be here for you. We can't say that anymore. Just because of the same point that Alexander brought up, we don't have domain over our admissions anymore. Let me bring a different lens to this. And I don't know if this is happening, but you can tell me. Geopolitics.

Let's say you're running a Polish long-term care home. Let's say you grew up during World War II. And let's say some of the new people who show up at your long-term care home are either German or Russian, with whom Poland has had a complicated history. Is that happening? And if so, what impact does it have on everybody? It is happening. And, you know, I just had,

I heard from one of my families the other day that there's a Ukrainian home. And there was, you know, an admission of free will crisis placement of a Russian, you know, family. And in this case, it actually triggered a lot of the Ukrainian residents in the home. What happened? It's just that they heard the language.

They heard this person speaking Russian, for example, right? And there's no issues between this person and that person. But it was like in a home where it's all about Ukrainian culture. Didn't they barricade themselves? They barricaded themselves in. They did. Sorry, who barricaded? I think it was the Russian that barricaded. And they wouldn't allow the Ukrainian co-resident to enter into their shared room. It was a shared space they were in. Oh, I see. And sometimes it's the basis. It's not about these people not liking each other, but it's again, when you're just being yourself,

but all of a sudden, you know, it's just that for this person with dementia, this person not understanding the geopolitics that are existing, you can imagine. And that's why, and I have to emphasize, none of this is about queue jumping or anything like this. These are all homes that were organized with an agreement with these cultural communities. Do us a favor, build beds so that we need more long-term care beds. Do us a favor, we'll do it in partnership with your community, your communities will subsidize us with this idea in place that your community will go through the process

and there'll be beds for them as well. But it's not a new issue. So my auxiliary president, who's been with the home for decades, over 40 years as a volunteer, who was part of the groundbreaking and the organizing kind of development committee of Copernicus Lodge brought me a newsletter from the Globe and Mail circa 1998 of the impact of the new placement coordinators in terms of regulation of long-term care homes impacting this very issue we sit here today and discuss on cultural admissions and that negative impact that we're no longer going to have that unique home and the ability to maintain admissions for our communities.

Stephen, let me play devil's advocate for a second here, which is to say the reason this is happening is because the government of Ontario, in its wisdom, has decided that there are too many seniors who are not well, who are in hospitals, who are taking up valuable space in hospitals and don't need to be in hospitals and would be better served in long-term care settings. And so they are trying to get them out of hospitals into long-term care settings, even if it's not culturally appropriate. Do you understand the kind of background that has led us to where we are today? I do. And I would say that on a very academic level, that is exactly what's happened.

The challenge, and going back to 1998 and even earlier, is the placement model or the care coordination model that leads to that admission into long-term care. One of the key elements that's missing is a recognition of culturally appropriate housing or long-term care for individuals. That this provincial government does not recognize. It does not recognize it in the admissions process. So as you're sitting going through a crisis placement, there are a number of elements that are brought in. You get to put forward the names of the homes you would like to go to.

There are different things like that. But if they're not available to you and you are taking up one of those very valuable spaces in the hospital, you could be moved against your will under the umbrella of Bill 7 into a home that may not be the right fit for you. And one of the pieces that is missing from the equation when they determine crisis placement is that cultural appropriateness. You hear stories of homes where 10, 15% or higher of their new admissions in the total mix of the home are no longer from that cultural group or from that social group. What it is starting to do is it is creating a dilution of the impact of the cultural home on its residents. It's creating instability. We hear stories of individuals barricading themselves in their rooms. Individual

residents who've already been placed in the home are hearing language in the hallways that can be triggering. And none of it is done maliciously by the residents. It's just the process or the system and the way that it's actually moving people into care. I also, I guess if you're going to the Estonian community, for example, and trying to raise money for your long-term care home, it's hard to raise the money when you say, oh, and incidentally, 20% of the people who are living there are Russian. That might be a bit tricky, eh?

Yeah. I mean, that, to put it mildly, might shut us down. And see, and this is the other sort of problem that we're getting into is that we're now down below 60% in terms of Estonians that we're serving in long-term care. Does that mean that we don't have Estonians that we could help? Not at all. We have a waiting line. Our home is a dual home. So we have nursing beds and we also have retirement rooms.

I would tell you, without trying to breach anybody's personal history, that we have a lot of people that we have on our lower floors and our retirement rooms that we would love to have and be able to care for in long-term care beds. But because they're not coming from hospitals and they're not labeled a crisis case, we can't even move them upstairs. Okay, I'm going back to Samir Sinha now. Give us some numbers on, because you would know as well as anybody, and I know this is a terrible expression, but they call them bed blockers, right? These are people who have complicated situations, but they're in hospitals, they're taking up acute care beds. It's not the best place for them to be.

They should be in long-term care. How bad is that problem that has obviously prompted the Ontario government to say, we've got to get them out of there, and even into culturally inappropriate settings if need be? Yeah, so when I was tasked with developing the senior strategy over a decade ago now, we really talked about the fact that if we're going to care well for our ageing population, we need to have a good continuum of care and the right mix of services so you can provide the right care in the right place at the right time. And part of the reason why we have 15% of our acute hospital beds occupied by people

who can't even go home, can't go to a rehab, can't go to a long-term care home, is we haven't right-sized our system. can't go to a long-term care home is we haven't right-sized our system. So we have, you know, so part of the issue is if we first of all just had more home and community care, people wouldn't even have to think about being placed anywhere else. People could actually leave the hospital and go home. But now we have this problem that we've created by just underfunding key parts of the system. And now the government decides, well, you know, just move people through faster.

So let's just pass legislation saying even if you don't want to go to that home that has a bed available, you're going. And the challenge is that they put this legislation in. It violates people's charter rights for consent. You know, you can share their information. Who wants this person? And it hasn't actually solved the problem. In fact, things have only gotten worse, Stephen. The ALC numbers in Ontario... ALC, Alternative Level of Care.

Alternative Level of Care, what we designate these individuals in hospitals, has actually worsened by 13% year over year for that general group. And those specifically waiting for a long-term care bed in hospital has actually worsened by 34%. And partly it's because we're not providing enough home-kin community care.

We've been focused on sending billions, building all these new beds, frankly, to warehouse a lot of people who don't need to be treated that way instead of actually properly investing in the care where people want as well to get care in their own homes. Should we, I mean, we don't have anybody from the Ministry of Long-Term Care here, but they did send us a statement.

You want to put this up now, Sheldon? I'm at the bottom of the page. This is Daniel Strauss, spokesperson to the Minister for Long-Term Care, who says the following. We understand the importance of cultural care homes to Ontarians and the challenges they are currently facing. However, a hospital is not a home, and it is important that seniors receive care where it most suits their specific needs. This is why Ontario prioritizes the medical care needs of residents when helping seniors find a home in long-term care. The government will continue to work with the long-term care industry and specific homes to find solutions that work for all Ontarians while we continue to end hallway health care in Ontario

and build Ontario's long-term care capacity. That's a big exhale from you there. Because I'm focusing on the medical care. Yes, that's one thing. But if we're not looking at the residents' holistic needs, they stop eating. They go back to hospital. They don't feel included. So their well-being actually deteriorates.

Stephen has mentioned about the research about general quality of life. If you have that cultural attentiveness, the ability to feel at home and communicate within your... But let's even go further. It's not just about quality of life. If the ministry wants to argue this on the basis of medical care, we have lots of medical research saying that culturally safe and appropriate care, you know, language concordant care,

means you're able to express yourself more easily, be understood, and have your medical issues better dealt with. We see this in acute care hospitals. We see this in every other part of the system. We're now actually violating this and actually making it worse. And that's why we're actually seeing worse outcomes clinically. But frankly, what really appalls me about this legislation, it's just like moving through. We're treating these individuals like cattle. We're saying their medical needs take priority.

If we're saying their medical needs do take priority, frankly, we'd actually take into the cultural context as well. But OK, Stephen, I don't know if this is the case, but the government in its wisdom has decided that the situation in hospitals is so urgent at the moment, they've got to clear those beds out, and damn it, if it means sending people into culturally inappropriate settings, so be it. Well, it's interesting, the statement that came

from the minister's staff. Arguably, moving someone between 70 to 150 kilometers away from their community is... Which is allowed. Which happens under Bill 7 by force and has happened to over 400 individuals since this legislation's gone into play, is not good care. Alexander brought up an interesting comment as well, which is not everyone needs high levels of clinical care when they come into long-term care. They're looking for a social network.

And when you have a community that surrounds an individual geographically, but also socially, culturally, and you ask those individuals to give of their time, their talent, their treasure, you ask them to donate to the organization, to give of themselves as volunteers, to be linked to those individuals. But then you dilute or change the mix in that home, making that much more challenging for individuals. No, I get it. But is it working? Is it clearing the backlog in hospitals? No, absolutely not. Still isn't anyway.

No. It's 34% worse. It's worse based on the data. But more importantly than that, very practically speaking at the front line, our wait lists have not decreased. And the individuals on their wait lists, because we can see who those individuals are who've named us as a home or an organization they want to come to, we can see those in the community and those who are in hospital that are linked to our community drifting down the crisis wait list as other people move in front. And you don't get to pick and choose. I'm reminded of a panel you had about a year ago talking about why Ontario can't build big projects anymore.

Oh, yeah. And, you know, I think part of the, or one of the panelists had talked about politics over policy. And we're at that, we're really a victim of that right now. Yeah, we're there. And I mean, I understand Bill 7 and what it's trying to get done, and obviously it's not working. But some of these problems that we have today were issues that were basically in the viewfinder 15, 20 years ago. We knew where our demographics were going, and nobody answered the call.

Correct. Well, let me ask you. You've had good relationships with political leaders in the past. Have you met with the new minister of long-term care yet? Not the latest one. Our fifth since this ministry was recreated. This is Natalie Kuzendova, right? Yes. I think she's our fifth minister since 2019. Now, it's interesting because she's herself, I believe, an immigrant and would,

you would think, understand the experience of culturally appropriate settings. But you haven't met her. Have you tried to meet her? I haven't. Okay. Has anybody here tried to get a meeting? I've met with her multiple times. You have? Yes. And? And I believe that she understands the cultural needs of our community. She is Polish.

She has Polish roots, does attend a lot of our Polish cultural events and advocacy efforts for our community. So I think she herself understands. But I believe she also has ministry pressures in terms of managing the entire sector versus just the cultural one. So I understand there could be some challenges, but she herself has been a large advocate. And I mean, from the Advantage side of the equation, as an association, we've absolutely met with her when she was the parliamentary assistant, and we'll be having a meeting with her this week, actually, as well. And Cultural Homes is on the agenda for the conversation. But one of the challenges I think she faces

is that she is but a person in a very large machine. And with a background in nursing and having worked the floors during the pandemic, she has seen firsthand how homes can function and how homes can fall into dysfunction. But she, and I know she's committed. It's just a matter of us now getting that commitment to translate into some action.

I do want to make one comment. She visited my home on Friday for a tour, Copernicus Lodge. And she was able to speak in her native tongue to the residents that had advanced dementia. Which I bet they appreciated. And the smiles on their face of being heard and understood by somebody from the ministry. That spoke volumes.

We have videos posted on our social network. I advise you to take a look. But you definitely see the impact of the residents when they see an individual that they could communicate with. But another thing that we've discussed in our group, and I think we had a, you know, aside from the politicians, are the people in the ministry themselves. So we had a, I remember this call we had.

I think we all came off. We were pretty peeved off. And I'm not being diplomatic, sorry. But the problem was that we were talking about cultural appropriate care. And one of the people from the ministry said, well, wait a second now, if I'm not of this ethnicity or if I don't follow this religion or this spirituality,

then you're not going to admit me or you don't want to admit me. And he said, no, no, no, no, no, that's not the issue. What we're trying to say is you can take that person who needs that kind of care or who follows that kind of dietary need and put them in a more appropriate home. Just don't send them to me. My mother-in-law is Chinese.

I'm not going to have her sit in the Estonian home. Nobody's going to play Mahjong with her. It doesn't make sense. It's a bad fit. Right. It's a bad fit. That's our time, everybody. I really want to thank the four of you for coming in tonight and helping us understand this situation a lot better.

It's a very timely conversation. And best of luck going forward. Stephen Harrison and Alexandra Gugeszczuk on the right-hand side of the table, Alma Yussi, Samir Sinha on the left-hand side of the table. Thank you very much. Thank you. The Agenda with Steve Paikin is made possible through generous philanthropic contributions from viewers like you.

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