November 20, 2019
Homelessness remains a persistent, societal and human rights issue that affects over 250,000 Canadians. The challenges go beyond just finding a place to live – those who are homeless or vulnerably housed have higher incidences of chronic mental and physical health problems and often face stigma while navigating the healthcare system. On this episode, we heard from different voices at the intersection of homelessness and health. We started our conversation with Linda Bingham from Working for Change, who shared her lived experience with homelessness and addiction and how she has now found her voice to tell her story for the very first time. We also spoke to Daniela Mergarten, who told us about her struggles to find stable housing, her experiences with the healthcare system, and her advocacy work with the Lived Experience Caucus of the Toronto Alliance to End Homelessness. Dr. Alissa Tedesco, a physician in the Palliative Education and Care for the Homeless (PEACH) program and co-chair of Health Providers Against Poverty (HPAP) Ontario, told us about the work being done on the frontline to address the healthcare needs of people who are homeless as well as some of the shortcomings of our healthcare and social service systems. Finally, Dr. Vicky Stergiopoulos, a clinician-scientist and physician in chief at CAMH, told us about her work looking at the effectiveness of a Housing First approach to improve housing stability and health outcomes amongst people experiencing homelessness.
Written by: Thamiya Vasanthakumar
Linda Bingham's full interview
Daniela Mergarten's full interview
Voices on the Street, Working for Change
Dr. Naheed Dosani TedX Talk
Daniela's CBC article on losing home on Dovercourt
Journey Home Hospice
Paper by Dr. Vicky Stergiopoulos: Key Ingredients of a Cross-Section Partnership
Extension of At Home/Chez Soi Study by Vicky Stergiopoulos
Health Providers Against Poverty (HPAP)
A Housing First Success Story
Toronto Alliance to End Homelessness
Street Health Report Card
Too Little Too Late: How we fail vulnerable Canadians as they die and what to do about it
Linda Bingham My name is Linda. I'm here today to share my story. My personal history with mental illness, my struggles with addiction and my experience with homelessness. I was raised in an alcoholic home where the patriarchal father ruled. My father was a self-admitted alcoholic. He went in and out of treatment centers and eventually he did get sober. He died. He died sober, and he was, that was through Alcoholics Anonymous that he did eventually stay sober. My mother was a despondent codependent woman. She was heavily into her own addiction, and she was actually in the detox before I was, to dry out, which it wasn't successful with her. My home life as a child was confusing. It was lonely. And for me it was overall torture to endure as a child.
Jillian Macklin Linda will continue to share her story with us throughout this episode. We want to take this time to acknowledge her courage in sharing her story. We met Linda through an initiative called "Voices in the Street" from the Working for Change organization.
Eryn Tong In today's episode, we want to shed light on the experiences of some of our society's most vulnerable individuals- those who are homeless or vulnerably housed - and help to dispel the stigma and discrimination that still remains. As part of this important discussion, we will be talking about difficult topics such as mental illness, substance use, and suicide. In recognizing that this may be a source of struggle for some individuals, we advise you to listen with caution. To better understand structural vulnerabilities like homelessness and poverty, it's important to be aware of the major role of social inequities on health. Childhood trauma, mental illness, inadequate housing, and social isolation - these all significantly intersect and impact health, healthcare, and access to equitable care.
Zeynep Kahramanoglu We hope that this episode inspires you to pause, listen, and recognize a person's experiences and circumstances, and to suspend judgment in doing so. We will hear from different guests, who will share their own stories, perspectives, and experiences with us. This is Zeynep.
Eryn Tong This is Eryn.
Jillian Macklin And this is Jillian.
Zeynep Kahramanoglu Welcome to Episode 69 of Raw Talk.
Linda Bingham At 12, I felt the madness at home was too great. And that was my first of many suicide attempts. I felt scared and I felt lonely within the confines of my own home. And I felt there was no escape. For me, I just wanted to go to sleep and never wake up is what I had felt. So what I did is I gathered up all my mother's pills and my grandparents' pills and took them one afternoon and I was found, I was told, by my parents, in my bed, comatose. I just remember waking up in the hospital and I just remember seeing bright lights and they were just sticking an instrument down my throat. And there was nurses and doctors around and no one was saying anything. It was all very quiet. But I was just remember being in a lot of distress. I was made then to see a psychiatrist, at that point. It was a male psychiatrist. And I remember my first visit with him is I, I sat in the room with him. And all I did is I looked at the floor and I would not talk to this man, there was absolutely no way. And what I had in my mind is in the alcoholic home, there's this rule that you don't talk about things going on outside the family, and I maintained this rule for my family, so I would not talk about anything that was going on. Nevertheless, I didn't trust psychiatrists, and I didn't trust institutions, but yet they would play a major part in my life, with numerous suicide attempts and many overdoses.
Jillian Macklin The mistrust of healthcare providers, of the healthcare system, and of societal structures at large, is an experience that many people with structural vulnerabilities share, including Linda. We spoke with Dr. Alissa Tedesco, a frontline worker and palliative care physician caring for people experiencing homelessness in Toronto. She tells us why a trauma-informed approach to care is crucial in practice.
Alissa Tedesco The people that we work with, in large part have experienced trauma, often numerous traumas throughout their life, and that experience of trauma and the ways that our structures have been violent towards them have played into why they are where they are now, which is oftentimes with advanced illness and coping with a number of negative impacts of the social determinants of health. And so for us, this is something that we see commonly in our population. We see, because of this history of trauma, they often mistrust healthcare systems and healthcare providers, which is often very well founded based on their previous experiences. And so as their care team, we do our best to acknowledge how prevalent this is in the population that we serve, and do our best to work on building trust with them, acknowledging that they've had these previous negative experiences and doing our best to ask for permission and kind of take their guidance and meet their agendas, as we care for them.
Eryn Tong Let's continue to hear Linda's story.
Linda Bingham At 25, I became a single parent. I had a pregnancy that was unplanned and it was not desired. I felt the stigma of society's unwed mother. I felt that then and it was a role as a woman. I felt like that I could never escape that role. I was an unwed mother.
Zeynep Kahramanoglu During this difficult period, Linda still managed to graduate from college and receive a diploma as a registered nurse. She began to work in the healthcare system, but as a single parent, she struggled to maintain an incredibly busy work schedule and find childcare at the same time.
Linda Bingham At that time, my disease of alcoholism and drug addiction was was also growing rapidly. I was drinking heavily on weekends. I was shooting up IV morphine, daily, and I was stealing medications from the hospital. My addiction and mental health issues were now affecting me really in all areas of my life, and I was totally unable to function as a parent and as a staff member in the hospital. That was the first time that I bottomed out, and I did go to treatment. I went to a treatment center in the States at that time. And I did stay sober for 10 years.
Jillian Macklin During those 10 years, Linda went back to school, took parenting classes, and accomplished many things. It was also when she had her second child, who's father eventually became abusive. And it was at this point that she ended the relationship.
Linda Bingham At this time, oppression faced me once again as now I was a single parent of two children with two different fathers. I had gone to living on ODSP because I had two children. I wasn't able to work. And I lived on ODSP and I was also living in Ontario housing. I felt I was at the bottom of a power structure of society. At that time, I felt shame, hurt, I felt lonely, and I felt remorse for what I had done as a person. I felt I was a bad person.
Eryn Tong Although Linda stayed sober for 10 years, she started to use again and her drug addiction gradually worsened.
Linda Bingham My life again had become pure madness. I had a history of childhood trauma, physical abuse, and addictions, and I realized that it had come full circle. And I kind of stood at the center of this circle and I was dead inside. And I really didn't know what had happened to me as a woman, and as a human being. I eventually lost custody of my son to children's aid. He eventually became a ward of the crown. I lost custody of my daughter to my parents. And what I had done is I had succumbed to my lonely shame, shameful, and terrifying existence. I was doing self destructive behaviors in all areas of my life. During the last year, my substance abuse had turned to crack. I was a daily crack user, and I also was drinking three bottles of rubbing alcohol a day. And I worked the streets, during the day and at night to support my habit. I felt my mind was lost. I had repeated hospital admissions of rubbing alcohol poisoning over and over and over during that last year. I lost my apartment due to my drug addiction. And I moved into a room in a house and I had just a small room. And when my disease was at its worst, I got evicted from that home due to my alcoholism. And then I became homeless. I entered the shelter system. At that time, I felt insane, I felt deeply depressed, and I felt hopeless. The shelter was run actually by really caring staff, but they were on overload. And what would happen is you would get psychotic patients that would have psychotic episodes and, or you get violent patients and then the staff would have to, to run and serve these people and the rest of the house. We'd just have to sit by the sides and watch what was going on and we were told, you just need to go to our rooms.
Naheed Dosani Consider this. Over 250,000 unique Canadians experience homelessness each year. For every 1 person in a shelter, there are 23 others that we don't see who are on the verge of homelessness. In fact, 1 in 5 - 1 in 5 - Canadian households experience housing vulnerability each year.
Eryn Tong That was Dr. Naheed Dosani, giving his TedX talk titled, "What's a life worth?" The link to his full talk can be found in our shownotes. He is a palliative care physician at Inner City Health Associates and William Osler Health System providing care for the homeless and vulnerably housed.
Naheed Dosani But what is the connection between homelessness and health? Compared to the general population, the homeless are 28 times more likely to have hepatitis C virus, 5 times more likely to have heart disease, 4 times more likely to have cancer. Oh, and remember the 23 others we don't see but on the verge of homelessness? Well their health is just as bad. Stunned by this data, I couldn't stop there. I wanted to know, how do the homeless die? Where do the homeless die? I was shocked by what I learned. The average life expectancy of the homeless? 34 to 47 years. The average Canadian? 77 to 82. The homeless die at a rate 2.3 to 4 times more than the general population. And while surveys show that most people want to die at home but only a fraction do, the data shows that this is so much worse for the homeless, dying in emergency rooms and hospitals. And then, in 2014, a report out of British Columbia confirmed the fact that homelessness cuts a person's lifespan by 50%. 50%. As a palliative care doctor who works in a hospital setting every day, I get the sense that I see people all the time with life-limiting illnesses like heart failure, liver disease, and cancer. But would be hard-pressed to name a diagnosis that predictively cuts a person's lifespan by 50%. So it got me thinking, is isn't homelessness a life-limiting disease? I mean considering the strength of the data, isn't homelessness a terminal diagnosis? It all comes down to a few crucial questions. What is a life worth? How do we value dignity at the end of life? Is it the same for everyone?
Eryn Tong Dr. Dosani is the founder and lead physician of a program called PEACH, or Palliative Education And Care for the Homeless, fostered by Inner City Health Associates. PEACH provides care for individuals that are homeless or who are vulnerably housed and who have palliative care needs.
Zeynep Kahramanoglu Dr. Tedesco, who we heard from earlier, also works as a palliative care physician for PEACH, which is truly a unique and innovative program and was the first of its kind in Canada.
Alissa Tedesco We see individuals with life-limiting illness, wherever they're at. So whether that be you know, in the street, in a shelter, in whatever housing that they do have, or who's ever couch that they might be living on. So PEACH started about five years ago, it just had its five year anniversary. And I wasn't there from the very beginning, but have been involved in some capacity for the last four years. And it started under the leadership of Dr. Naheed Dosani who's still involved in the program. And what he saw during his training was that there was this population who was really being excluded from mainstream palliative care, whose needs aren't being met. And in large part, those were individuals who are homeless and vulnerably housed. The full-time staff that we have is Sasha Hill who is our nurse and PEACH coordinator, and she does tons of the work for PEACH. So she's there on the frontlines every day being the first point of contact for a lot of our clients. She most recently, you know, had a bunch of donated equipment and she was out riding on the TTC with a commode for a patient. She helps navigate their care, oftentimes accompanies them to appointments, tries to address the social determinants of health, their income, their transportation. And she's, I think, one of the strongest parts of our program and what really makes us different from a lot of other you know, palliative care services who don't necessarily have that sort of care navigation that a lot of our clients really need to navigate the healthcare system. So we also have a very dedicated and wonderful palliative care coordinator who coordinates a number of the services that our clients need and often goes above and beyond her role to make sure that our clients get equitable services. There's also the nurses and the PSWs who care for our clients. So it's far beyond just nurses and doctors, but really, the communities that support these individuals, a lot of the people who work in some of the shelters and supportive housing units are very instrumental in making sure that those clients get to stay where they want to for the end of their life. And they often as well go above and beyond their roles to ensure that those individuals get their last wishes and die with dignity in a way that they would have wanted. And so it's really a community of people who are caring for clients within PEACH beyond just kind of the frontline clinical team.
Jillian Macklin We asked Dr. Tedesco to walk us through how PEACH works.
Alissa Tedesco We're a bit different in PEACH from mainstream palliative care services, in that we accept referrals from anyone, so that could be a friend, a family member, a shelter worker, a social worker, a physician, and so in that way, we try to be more accessible. And so oftentimes, we'll get a referral with what limited information that they do have, but these people, you know, they're worried about them, they think they might be dying. And they think they might benefit from having a team that can really provide trauma-informed approach that provides comprehensive palliative care. And so we'll get the referral, sometimes formally or informally, and then we do our best to meet the patient where they're at. So sometimes it's finding them in a park where they might frequent, it might be meeting them in the hospital before they're discharged, or it might be in the shelter where they're living, or in their own home.
Eryn Tong Since PEACH began, there have been a number of other similar programs that have launched across Canada and in the United States. Their approach and model of care have also inspired the development of Journey Home Hospice which opened in May 2018. It is Toronto's first hospice dedicated to providing end of life care for the homeless. Journey Home Hospice is a joint partnership between Hospice Toronto, Saint Elizabeth Foundation, and Inner City Health Associates. We asked Dr. Tedesco what challenges she faces as a physician working so closely with people facing structural vulnerabilities at the end of life.
Alissa Tedesco I think just the frustration that you get with our health and social service systems, not being able to meet their needs. So we all work within the systems that we know oppress people. And so participating in those systems and not being able to provide the services and the care that you'd like to is very frustrating. From a palliative care perspective, a lot of people want to die in the place where they live and where the people who they care about are around them. And, you know, our government is only able to provide so much care. Community resources, and community agencies are often at a maximum. You can't get people to appointments when you want to, you know, other services don't always do a great job of collaborating with the community and the people that work with them in the community to kind of get them safely home and to provide a comprehensive plan that actually would work for that patient. And so I could go on a long time, about you know, kind of all the ways that our healthcare systems and social service systems, fail people but working in those confines is definitely frustrating, just as the person who's providing care and I'm not even the person who you know, is dealing with that myself. I'd say some other issues is just like the stigma that our patients face. So you know, from a palliative care perspective, a lot of them are excluded from mainstream palliative care services. And a lot of that has to do with, you know, behavior. They're labelled as "having behaviors," and that might be, you know, from their mental health disorder or from their substance use disorders and because of that, they're excluded. They're deemed high risk. And often that risk is very individual and sometimes not based on the person in front of you, and it can be oftentimes based in stigma. And so that's very frustrating to try to- you know, there are services there and then you try to advocate for your patients, and sometimes they're just not the appropriate services. They don't use harm reduction. They don't use a trauma-informed approach. So finding them appropriate services can be a challenge as well too
Zeynep Kahramanoglu The challenges of finding appropriate services and the coordination and continuation of care that Dr. Tedesco highlights is certainly one that resonated with Linda's story. After she first entered the shelter system, she describes her challenges in getting the help that she needed to find appropriate and long-term housing. In the first shelter she lived in, she was given a shared small room with two sets of bunk beds with a serious bed bug infestation.
Linda Bingham Like I stayed at that shelter for a month. And I was still using drugs. I was still drinking my rubbing alcohol and doing the crack and I did have a therapist I was seeing on the side. And we had decided it was time for me to go to treatment again. So I did. I went down to Jean Tweed in Toronto for drug and alcohol abuse. They didn't know what to do with me after I graduated because I was homeless, and I wasn't able to go back to the shelter I was in. So they put me back in the detox. So I sat back in the detox and waited. What I was told to do is find shelter. They don't have people that look for housing for you, you have to look for housing for yourself. So I was told to find some kind of sober living, maybe that would be appropriate for me. And I did. It took me a while. It took me a couple weeks.
Jillian Macklin From the detox, Linda went to a sober living house, which had 9 women living in it who were all newly or recently sober. Although the women were looked after for their needs, it was ultimately up to themselves to look for further housing, since they were only given 9 months to live there. She finally found another sober living house for a month, and from there, she found Harbour Light, another sober living house run by the Salvation Army.
Linda Bingham It's very accommodating, and they do have counselors there to help you, but they don't provide for long term housing. They have no one on staff that that's there to help you for long term housing. It's just, you're in transition. So you're kind of there, not knowing what's going to happen to you. Always thinking, I'm going to end up on the streets one of these days. And there you have 11 months to live. And I stayed there for seven months. I was looking for housing while at Harbour Light, and I found the housing workers around the city. I had gone, and it was a relentless search, looking for housing. There was one housing place I went to and I actually had to beg the lady to do something. I said, would you please look up something for me? Like I'm going to be homeless, like on the street in a couple of months, and I need you to help me, and she finally agreed to one spot but she didn't want to do anymore. But I did find Habitat for Humanity. They phoned and they had a spot at a rooming house, which I would share a room with somebody. And the rooming house is for women with mental illnesses, was how it was laid out to me. And I do have mental illness, so I know I qualified to be there. Because at the end of Harbour Light, I was getting really scared, and I was always living in fear, and actually what I did do is I did obtain a sleeping bag and I did get prepared. I got supplies to be ready to live on the street because I thought that's where I was going to end up. I just thought I either take this rooming house or I'm going to the streets, so I might as well get ready. And I do feel that when I was looking for housing, I got this label as "homeless" on me. And right away, I got categorized as there is something wrong with me, as a person, and then when I told them I was an addict, it was like, then I became a bad person and that I was homeless. I thought they felt as though I deserve to be this was something I had done to myself, was the feeling that I always got. And I found that it was a real dangerous combination for me to be stuck in. I felt I carry society's anger, shame, and fear. And I challenge their perception of a homeless person, especially when seeking services that I deserve as a human being.
Alissa Tedesco It's important to acknowledge that homelessness isn't simply like a lack of a home. I once heard it described by someone as a symptom. And I think I really like that definition. It's a symptom of unhealthy public policy, of inadequate social security systems, of inaffordable housing, of colonization, racialization. And so when we're caring for people, under the PEACH team, we don't just see people who are homeless, but we see people that suffer all of these other structural vulnerabilities that have contributed to you know why they're at where they're at now.
Eryn Tong Both Linda and Dr. Tedesco remind and challenge us to look beyond our own biases and stereotypes, and to recognize the complexity and enormity of these structural vulnerabilities.
Jillian Macklin Our next guest, Daniela Mergarten, tells us her own story with low income and precarious housing that reflect these vulnerabilities. Daniela is on the lived experience caucus of the Toronto Alliance to End Homelessness. Welcome, Daniela.
Daniela Mergarten I'm sort of going to tell you a bit about my story and I'm 63 now. So it is definitely like a case study. And all the adversity I've had in my life. It's amazing that I can still smile and participate and actually be an advocate for change around poverty, homelessness, and just making sure that people are taken care of. I'll start with, which is sort of painful to talk about, is we're immigrants from Germany and we immigrated in 1967. I had a very abusive stepfather, which, you know, there were no shelters for women. My mother was beaten and I was beaten. He was an alcoholic. And it was very stressful for me because I didn't have really a chance to grow up from six years old. I had to maintain a household take care of my siblings, there were five. And I ended up leaving at 16 because my stepfather took me out of school, but he said, you know what, go get a job, see what life is all about. I had no, I loved school, it was my safe place. And I was doing well, even with my English handicap. So I got a job as a receptionist, at an optical company, and he actually took all my money, I didn't mind giving money to help support the family. But we didn't eat better. We still weren't paying our rent. And that's when I decided to leave at 16, partially for my own safety. The sexual abuse, my mother didn't know about, and because my mother was beaten, I couldn't talk about it to her. And knew it wasn't right, but I let it happen because I was afraid of him. The worst thing is to see my mother bounced off walls and at 63, I still have nightmares around that. I came to Toronto. I wanted to get out of Kitchener because we're from Kitchener. And I had nothing. I left with a little suitcase and I had no home. Luckily I was young and pretty, people took me in. And I couch surfed for a number of years until I found my place of my own at 21. I then enrolled in school. I found this apartment. It was $125, a top floor at 463 Dovercourt. And I went to see a doctor because I had a hard time getting up. I had a hard time functioning. And the doctor without really asking me anything, had said to me, "Oh I'd like you to sign yourself into LakeShore psychiatric ward." And I had aspirations to teach. I didn't want to have a psychiatric history. My boyfriend said, You know what, you're not crazy. You're not going to do that. And I'm really glad. Why, if somebody, if you were just given me a hug, or some kind of kindness or- I can just imagine if I would have done that I probably would have been medicated, Heaven knows where I would have ended up. And that also made me really afraid to seek out help in terms of psychiatry.
Zeynep Kahramanoglu Daniela had to uproot her life at a young age and travel to an unknown place to find safety. We asked Daniela what she felt at that time.
Daniela Mergarten I actually felt free. Which is strange, a strange way of saying that, because the oppression I had at home was not good. It wasn't a happy place. I mean, I had, every time I left school, my stomach would hurt if I knew my stepfather was home. And if I knew he wasn't there, I'd be running home. So to live in such an oppressive situation was not healthy. And I felt free, right? And I wasn't afraid! I really wasn't afraid. I, you know, I think when you're young, you don't think about, you just do, right? And I got on a bus and I ended up here and I ended up actually sleeping first time in an apartment building in the lobby and somebody picked me up.
Jillian Macklin Daniela fought to stay off the streets. She moved many times over the years, with eviction from apartments and rent costs rising too high in Toronto. Daniela told us about many arguments with landlords and cases with the legal system. Throughout all of these experiences, one of the biggest challenges she faced was the loss of community and social supports that came with moving.
Daniela Mergarten When I lost my second home on Dovercourt, after a two- year fight, I was all over the media. And when I lost that, luckily the last day I found a place up at St Clair West and Bathurst. It is $1350. $1350 with mice. Okay? And I lost my hood. I cried when I moved, the whole - the whole way through. Because like I said, I was 61 and my community was my home. It was my family and the importance of that. And it still hurts. You know, I worked in the hood. And I loved my hood. I knew all my neighbors. And I was so happy.
Eryn Tong Earlier, Daniela told us about her first interaction with the healthcare system. It was with a psychiatrist who made her feel pressured and trapped and it was not what she needed at that time. Daniela's fear of seeking psychiatric services reminds us of the experiences we heard earlier from Linda and Dr. Tedesco. However, Daniela eventually found a family doctor, Dr. Marken, who went above and beyond to help her get the medication she really needed. She told us about the impact he had on her life, and could not express enough how kindness and compassion from healthcare providers can be truly transformative.
Daniela Mergarten It was like $90 for 60 milligrams. And I had gone to this doctor asking him to write a letter for special consideration that I could get this. And he said to me, you know what? He says, I'm not going to do it. He picks up the phone, phones the pharmacy, and says, put it on my bill. And the kindness of that man, at that moment, was just immense. He's one of my angels. He's one of my angels. And Dr. Markens, and he was already like, I want to say, in his 70s, was very kind and then I, because I was in the community, I heard of all the kindnesses he did to other people in the community. And I just want to say that a doctor that really cares can make a whole difference in your life. That man looked after me for 20 years, and was a saint. He always had a joke for me. And he was very kind. And I needed that. I really really needed that and I admired him and how much that meant to me that a person really cares. The difference a doctor can make in your life again, because I didn't even talk about Debbie Honnickman. Debbie Honnickman is my recent doctor that I have had for the last 20 years. When I went to see her, the first thing she asked me was, if I'd have been sexually abused. And I remember this, this wall of heat coming up, and I just said, I can't talk about it because I couldn't. But she then wrote down post-traumatic stress, which got me on ODSP because I was struggling on welfare. Even when I was going to school, I had $100 and you can't maintain health, nevermind i didn't eat well as a child, then try to move forward and not being able to eat well because you're paying rent, whatever. It's going to catch up with you. She had given me so many tools and how I needed that for my own healing, you know, to be able to move forward, and so I'm very late at 63, you know what I'm saying? If somebody would have helped me earlier on, you know, I probably would have been more productive. Well, I can't say more productive, I have always been productive, but it wouldn't have been so hard.
Zeynep Kahramanoglu On top of physicians, there are many other key players in the healthcare system that help with patients' needs, especially those living with homelessness. However, social services proved to be quite challenging to find and navigate for both Linda and Daniela. Daniela explains:
Daniela Mergarten You know I always worked and did things. I didn't know about community services. Even though when I was on student welfare going to high school, nobody told me anything. Nobody said, oh, here's a place you can go for food, or here's a place you can go for support. You know, I was always struggling on my own. And the more you do that, the more you hit your head, the harder it is to get up when you fall.
Jillian Macklin An insightful piece Daniela had was the need for consistency in these services:
Daniela Mergarten So I had a worker for a year. And well, I had three workers for a year because they change and how I find that problematic too. Because, you know, you, you know, I, being an abuse survivor, I have trust issues. So you develop trust with one person. And then three months later you get somebody else. It's really- it's an issue, right?
Eryn Tong Daniela described how important it is for physicians to understand the unique needs of the patient in front of them, beyond simply attending to their medical needs.
Daniela Mergarten As an MD, you should familiarize yourself with community services. So as you're treating your patient, you know, also I said give them time, give them time, assess them, and you know, like triage, what are their needs? What is the most important need? Is it housing? Have some kind of direction for them if they don't have. That's huge. I mean, a lot of people don't have a doctor. But if you have a doctor that can make or break it, make all the difference in the world. It could be a first step on a path. I also speak about, you know, more collaboration between services. I worked with a woman for 13 years, like doing case management, trying to get her a house. She was using all the freaking services in the city, and you think anybody was helping her? When I came back from the United Nations, I called a medical conference! I got all those services around one table saying why can't we find this woman a place to live?
Zeynep Kahramanoglu As Daniela mentioned, there are multiple sectors and organizations that have similar goals to help, but do not traditionally work together.
Vicky Stergiopoulos How do we bring the sectors together that need to come together for those that have needs, that span different sectors, like the disability sector and the health sector and the housing sector. And this is where we saw the multiple C's and need for collaboration, for communication. The need to support choice and the need to compromise because we won't be able to achieve everything we set forward to do.
Zeynep Kahramanoglu You just heard from our next guest, Dr. Vicky Stergiopoulos. These findings were based on a study she conducted, which found that the key drivers of the success of her efforts were collaboration and communication. Dr. Stergiopoulos is a clinician-scientist and the Physician-in-Chief at the Centre for Addiction and Mental Health, or CAMH. She's also an Associate Scientist at St. Michael's Hospital and a professor in the Department of Psychiatry at the University of Toronto.
Vicky Stergiopoulos My research has focused on individuals that are homeless and have a mental illness. We've done studies looking at housing intervention. We've done studies looking at health interventions, especially after they leave hospital. At the moment, we're looking at two interventions. One is to provide recovery supports to people that are homeless and have mental illness. And the other is to look at the role of financial incentives in supporting engagement with services for this population. There are other smaller studies that are happening, but these are the main projects that my team is spending time on at the moment.
Jillian Macklin We asked her how she became inspired to pursue this work:
Vicky Stergiopoulos I think my first exposure as a trainee at the old Wellesley hospital, it no longer exists, but it brought me face to face with social disadvantage. And the improvements we need to make to our systems of care to serve those that need us most. And this was reinforced time and again, every time I saw a person with mental illness, whether they were called house or not, because the majority even when house had very sub-optimal housing, housing that was not conducive to their recovery. I think the importance of the social determinants of health and the importance of looking at health holistically, looking at the person in front of us and all the other things that are happening in their lives, and all the other struggles other than specific health issues that we tend to focus on in health care. I think that in a nutshell is the reason that I do the type of work that I do.
Jillian Macklin Dr. Stergiopoulos is a lead researcher of the "At Home/Chez Soi" study, which was recently published in the journal Lancet Psychiatry, which received a lot of media attention. The At Home/Chez Soi project is the longest running study of its kind, according to the American Association for the Advancement of Science. The study uses a "Housing First" approach, and we asked Dr. Stergiopoulos to explain this to us further.
Vicky Stergiopoulos Housing First is a newer approach to housing people that are homeless and have a mental illness. The approach views housing as a human right and offers immediate access to housing, usually in the community with help from rent supplements to support their other provincial income support sources, along with evidence-based intensive mental health services. And it's this combination, this coordinated housing and support that seems to be making a difference, both in the short-term and in the long-term. The Mental Health Commision of Canada, actually on their website about At Home/Chez Soi, has a number of interviews with program participants. And I still communicate with some of the participants because they've joined other studies, they wanted to stay connected. And what they describe is that the program is life changing.
Eryn Tong According to the latest report from the Mental Health Commission of Canada by Dr. Stergiopoulos' team, traditionally, participants can't access permanent housing without first meeting strict requirements on sobriety and acceptance of psychiatric treatment. This reminds us of Linda's story earlier, as she described how she lost her apartment and was evicted from a house due to her substance use. Housing First is different in that it provides participants with immediate access to housing, along with treatment and mental health support services.
Vicky Stergiopoulos In 2015, we published work showing that after two years, individuals in Housing First did a lot better in terms of housing stability and some other outcomes, such as community functioning or quality of life, compared to those that received usual services in the community. We recently published outcomes after six years in Housing First and we saw that the housing outcomes continue to be much better for Housing First, especially for those that have higher needs for mental health service support. That is our sickest patients, that is the people that have the more severe conditions, do very poorly in the usual care system, which points not just to the strengths of the Housing First model, but also to invite us to take a look at what is our usual care and how can we do better?
Zeynep Kahramanoglu The Housing First model spanned across five Canadian cities: Vancouver, Muncton, Winnipeg, Montreal and Toronto. Housing First participants had been stably housed for 80% of the time compared to 54% among participants who underwent treatment as usual, effectively reducing homelessness.
Eryn Tong In the spirit of housing as a first-line treatment to health, a radical new partnership was just recently announced in the past few months. It was launched by the University Health Network, or UHN, the largest academic hospital in Canada, along with the United Way of Greater Toronto and the City of Toronto. It's being coined a "social-medicine initiative" and is the first of its kind in Canada, which will dedicate a plot of land worth almost $10 million to co-design and create supportive, affordable housing with community partners.
Zeynep Kahramanoglu Although housing is an important first step, Dr. Stergiopoulos tells us that other strategies and social factors are also needed to help reduce homelessness and improve an individual's quality of life.
Vicky Stergiopoulos Other than housing, there is a number of things that we can do. For example, if cognitive impairment is a main issue that stands in the way of people doing their best and achieving their goals, can we bear housing with cognitive remediation strategies? Can we integrate better employment strategies to give people an opportunity to find meaningful work and achieve other life goals? What we hear from them is, they just want to be part of the community, they want to give back. And finding ways to facilitate community integration will go a long way to improving quality of life. So, we don't have the answers for all of that, but certainly we know which direction we need to go to to advance the evidence base.
Jillian Macklin Over a two-year period, the study found that every $10 invested in Housing First services resulted in an average savings of $15.05 for high-need participants. These savings came from reduced hospitalizations, health provider visits, and emergency department and shelter use. So with this type of evidence, we were wondering about the next steps, especially when it involves policy makers.
Vicky Stergiopoulos When it comes to policymakers, the first thing is to let them know that Housing First is a solid investment. It works in the long run, just as well as in the short run. The study also poses new research questions. If housing is first, what's next? How can we support other outcomes like quality of life, like recovery, like mental health symptoms severity, like employment or education- outcomes that we haven't seen Housing First do we making a big difference for compared to usual services. So there is room to improve the Housing First model and there is room to further understand how do we improve outcomes for this population.
Eryn Tong Along the lines of improving recovery outcomes for this vulnerable population, Dr. Tedesco shared with us her advocacy work as co-chair of HPAP, which stands for Health Providers Against Poverty.
Alissa Tedesco It's an alliance of healthcare providers from across disciplines. So that includes nurses, physicians, social workers, dietitians, amongst many others. And we're an alliance that was initially kind of based in Toronto but has since become more of a provincial network of healthcare providers. And since the inception in 2005, there's now two other chapters in Nova Scotia and in Newfoundland, as well there's small municipal chapters in Peterborough and Hamilton. So we've expanded quite a bit since the inception in 2005. HPAP's main goal is to reduce social and health inequities. As healthcare providers, our society allots us with a lot of power and privilege. And we are often very uniquely privileged to hear the stories of our patients and our clients and the struggles that they have facing, you know, structural determinants of health and the social determinants of health. And so for a lot of us, we see our roles having a lot of social accountability, and that our roles uniquely position us to be able to advocate alongside the patients that we see, and to speak to some of the injustices that we witness within our societies. So currently, some of our most recent work was around the federal election. So we kind of had two major projects that we did during the federal election. One was vote pop ups. And so this was done based on some of the work that's done at Ryerson and from Dr. Danyaal Raza back around the municipal election, but the goal of it was really to reach out to groups who aren't typically represented in the voting process or, or who face barriers to participating. And those are populations that are often very affected by the outcomes of elections. The other project that we did was a Federal Election Report Card, and we had done something similar for the provincial election. And for that project, we graded and looked at six kind of priority topics that we saw would have significant impacts on populations living in poverty. And we know that there are certain populations that are disproportionately affected by poverty. So those populations that are racialized, people who are Indigenous, for example. And so we looked at things like climate change, like access and affordability, employment income, Indigenous sovereignty, the overdose crisis, with a goal of just really educating voters about the multiple things that play into health and health outcomes. Right now, a lot of the work that we want to do is to build capacity in healthcare providers to engage in advocacy. I think a lot of- I mean I can speak to my experience as a medical student and a resident, you feel very motivated to engage in social justice work, but you don't necessarily know how to do it and I know that kind of is seen in other medical professions. And so giving people the tools and the confidence that they have to actually engage in this work I think it's something that we're kind of uniquely positioned to do and something that I'd like to work towards expanding into the future, to just go beyond teaching people about the social determinants of health but to having conversations about, you know, why are these these inequities and how can we, as healthcare providers, engage in advocacy at more like meso and macro levels? And I think as a health care provider who works with these populations, you can feel, sad and frustrated and angry, but I feel like when you're doing this more upstream work, it helps you to cope with some of those feelings and feel like you're actually doing something about it in a larger level, and not just kind of offering a band-aid solution. And so I'd advocate for people who you know, care about these issues and want to provide this care to these populations, and everyone really does in some way, to perhaps see that as a way to provide comprehensive care, to engage in advocacy at upstream levels for those populations beyond just the one-on-one individual clinical care.
Jillian Macklin Tackling these issues at upstream levels for this population is in fact the focus of important research being done here in Toronto. Founded in 2016 by Dr. Andrew Pinto, the Upstream Lab at St. Michael's Hospital was developed to create a space to advance thinking and collaboration in addressing the social determinants of health. I've recently joined the lab and am conducting my PhD research as part of this team. If you're interested in learning more, feel free to reach out. The link to the lab website can also be found in the episode shownotes and on our website.
Zeynep Kahramanoglu You've seen the importance of advocacy by physicians and researchers, but equally important is the advocacy and storytelling of people with lived experience. This takes bravery and courage. Now, with a stable living arrangement, Daniela is quite the activist. She has spoken on mayor rountables, and even visited the United Nations.
Daniela Mergarten I'm on the Alliance to End Homelessness. I'm on their human rights working group. And I've talked to my MPP already about how I want to see the shelter allowance be increased for OW/ODSP because $499 doesn't even get you a room in the city. I'm just one person but I know I have a lot of people's ears out there. And that's why I keep doing this. I encourage anybody, of you young folks to go out there, check it out. We do actually have some of your third year students from the University medical team on the human rights. So they're awesome people. I really feel that they're listening to the people about the experience which is us, and we actually did come up with a working model called "Nothing about us without us" meaning that we have to be at every link. So anything that the Alliance does has to come back to us and we approve it.
Eryn Tong We also asked Linda what her life looks like today and what it was like telling her story for the first time.
Linda Bingham This is something new. I'm terrified of speaking. I'm terrified. I used to be terrified to go out of the house, I would have to take several times before I could get out of the house because I was afraid to be around people, afraid to be around crowds, and afraid to have eye contact with people was very painful. For me to speak, no I've been nervous for the last three weeks. I get terrified. But I want to want to challenge that terror. I don't want to live in that terror. And I want to be able to speak. I have a voice today. I'm learning I have a voice, and I want to use it as best as I can to help. Today I've been sober for over a year. I do live in that group home, the one where I do share a bedroom and it's with women with mental health issues. Some are worse than others in the home. I got this place through Habitat for Humanity. I ran the 5K Toronto Marathon in May of this year, which was a milestone for me. I work part time right now for the TTC. I volunteer in the kitchen at the Salvation Army. I do day programs at the Star Lady Learning Center. I take art classes. I belong to the library- I have a library card, which is a big thing for me. I see a psychiatrist two times a month, which I've learned to adore and to trust. I have gratitude, I have joy, I can smile, and feel happiness.
Jillian Macklin Our sincerest thank you's to Linda Bingham and Daniela Mergarten- two incredible, inspiring women, who shared their stories with us today. We hope that you take the time to listen to their full interviews on our website at rawtalkpodcast.com.
Zeynep Kahramanoglu We would like to thank Dr. Alissa Tedesco and Dr. Vicky Stergiopoulos for their insightful words and expertise. A full transcript for this episode can also be found on our website.
Eryn Tong For this episode: Jillian, Zeynep, and myself, Eryn, were your hosts. Content Development by Thamiya. Kat was our Audio Engineer and Melissa was our Executive Editor. Mehran and Nathan were our photographers. Thank you for listening and tune in to our next episode on pediatric health. Until next time, keep it raw.
Thamiya Vasanthakumar Raw Talk podcast is a student presentation at the Institute of Medical Science in the Faculty of Medicine at the University of Toronto. The opinions expressed on the show are not necessarily those of the IMS, the Faculty of Medicine, or the University. To learn more about the show, visit our website rawtalkpodcast.com and stay up to date by following us on Twitter, Instagram, and Facebook @rawtalkpodcast. Support the show by using the affiliate link on our website when you shop on Amazon. Also, don't forget to subscribe on iTunes, Spotify, or wherever else you listen to podcasts and rate us five stars. Until next time, keep it raw.