‘In Dialogue’ Episode 15: Inclusive Healthcare for People with IDD

Introduction:
CPSO presents “In Dialogue,” a podcast series where we speak to health system experts on issues related to medical regulation, the delivery of quality care, physician wellness, and initiatives to address bias and discrimination in health care.

Dr. Saroo Sharda (SS):
My name is Dr. Saroo Sharda. I’m a practicing anesthesiologist, in addition to my roles as a medical advisor and Equity, Diversity and Inclusion lead at the CPSO.

Hello everybody. We are very excited to be joined by our guest today, Dr. Yona Lunsky, who’s the director of the Azrieli Adult Neurodevelopmental Centre. She’s a senior scientist in the Adult Neurodevelopmental and Geriatric Psychiatry Division, and director of the Health Care Access Research and Developmental Disabilities Program at CAMH. She’s also a professor in the Department of Psychiatry at the University of Toronto, and an adjunct scientist at ICES.

Dr. Lunsky and I have had conversations virtually before about her area of expertise. So, I’m very excited to actually be in live conversation with Dr. Lunsky today. Welcome and thank you for joining us, Yona. It’s such a pleasure to speak with you today and have you share a little bit about your research on the mental health needs of individuals with intellectual and developmental disabilities, and their families. Can we talk a little bit about what moved you to pursue this field of work?

Dr. Yona Lunsky (YL):
Sure. I don’t know what your experience was, but I come to this as a younger sister of someone who has a developmental disability. And probably this was not the area I was going to do for that very reason, so I think I moved away from it in that sort of adolescent high school time, I wanted to do something very different from what was going on in my own family. And then, when I was studying psychology, actually, as an undergrad, I was like, “Why did they never talk about people with disabilities when we learn all the stuff in psychology?” And it just seemed like it made so much sense to apply these things to this group, but there was so little about them in what I was learning.

So, I thought about clinical psychology as a way to understand this population better. And I think my own experience, working at a summer camp, spending so much time with my sister and her friends as a young person, I had ideas about things and it made a lot of sense. And I got more involved in health systems work and in the Faculty of Medicine here at U of T because one big place where everybody goes — not everybody sees a psychologist, but everybody sees a family doctor, for example, or a primary provider. Health care generally is a really big issue, so it just seemed to make sense, I guess, for me.

SS: Yes, we do have that in common, you and I being younger siblings of somebody with a developmental disability or an intellectual disability. And certainly, I resonate with that idea and that experience of being a teenager and really, in some ways, wanting to be as far away as possible from these experiences. And I’ve sort of come full circle in some ways as well.

I really want to pick up on something you just said there, Yona, which seems perhaps minor, but you mentioned spending time with your sister and her friends. And I think about that a lot in terms of the ideas around how we create inclusion for folks, and really how we move away from this idea that things need to be separate, and I’m thinking about inclusive employment as an example. And this idea of spending time and getting to know people as individuals as being a really important component of all the inclusion work that we do. Yeah, I

YL: Yeah, I know when I was growing up, there were some things we did have to do quite separately. So, my sister didn’t go ever to the same school as me or the same summer camp. But we did get to go to the community center. And sometimes we were in the same program, sometimes she got to be in a program with me, or sometimes I could just sort of see or hang out with what she was doing in her activity. So, I got to know other people, not just my sister, and I think that kind of regular, everyday experience. And now I think young people have more of those kinds of exposures as we do more inclusion in schools and camps, and all different kinds of activities. So, seeing people when they’re well and seeing people interact with each other, not in healthcare, is a really important thing, I think, to inform us when sometimes we see people in really difficult situations, especially like in hospital or in the emergency department.

SS: Absolutely. Yeah. And I talk about that a lot with my kids and different children that they have in their class, and different friendships that they’ve developed. And I do think that’s very important.

Let’s shift focus a little bit to what you mentioned around everybody has to see a primary care provider at some point. Can you talk a little bit about what some of the issues are that can make those visits, those tests, those procedures, really quite challenging at times for folks with intellectual disabilities. What has been your experience of that in your work?

YL: That’s a great question. I think sometimes these things are a bit easier with a primary care provider, if it’s someone that they know well and they see over time. One thing that’s difficult is things that hurt are difficult, things that are new are difficult. So, any kind of procedure where you need to be relaxed for it to work well, so if you’re getting blood drawn or if you’re having a Pap smear, it helps if you’re calm. But it’s kind of an invasive thing and you don’t want to do it and you’re not calm, which makes it even harder. I think those things are difficult. I think even just for some people, conversations with new people are difficult. Or spaces are difficult. So, even if the appointment could maybe go well, the half-an-hour of the extra wait because you got there early and things started late in the waiting room might make things really difficult once you’re in the appointment. Being with people you don’t know, being in a setting at the wrong time of day or for too long, being asked questions you don’t have the answers on, not understanding the information that’s being said to you, not having the information communicated to you. So, sometimes we see entire medical interactions go, if it seems like the person might not understand, to somebody else. And then for other people, it might be like, “I’m going to ask you all the questions because you have to know the answers. I’m very respectful of you.” But they’re like, “Ah, I don’t know any of the answers.” So, that can be stressful too. I think, in general, this is a group of people where they don’t always have a lot of agency, they can’t always pick the things that are meaningful for them, and they don’t have a lot of control over things that happen to them in their lives and, also, in their medical care. So, anything that I think is about them not having control or feeling like they have some control or feeling like what is important to them is sort of fitting into what’s happening, I think can be difficult.

SS: Yeah. And I wanted to come back to something you said there around not just the procedure itself and the interaction with the healthcare provider, but everything that happens before that, including the space. Sometimes things that are very sensory, very loud spaces, or very bright spaces, or very busy spaces, that can be very challenging for certain people. And I think perhaps it’s not something that we always think about in healthcare. We just sort of assume that this is going to be fine for everybody. And we don’t necessarily think about that experience right from the moment that the person steps into the door, interacts with the person at the front desk, sits in a chair, all of that is really kind of an important thing to think about before we even get to the interaction with the healthcare provider. And I was also just thinking, things that hurt and things that are new, and things that we don’t have agency and control over — it’s really stressful for all of us. And really, you know, thinking about that, as when we think about changes to our systems and our behaviours, it usually ends up benefiting everybody.

YL: Yeah, 100 percent. I think some of the strategies that are going to make sense for this group — I mean, we do it quite naturally, for example, when we work with children. Think about our vaccine campaign we have for little kids, think about all the activities and things you can do in the waiting area if you’re little, or the sort of children and family-centred kinds of spaces in children’s hospitals. So, we think about these things. Think about senior friendly initiatives and things that we do sometimes to support older adults. We just don’t think about it necessarily for people with development disabilities, especially if they don’t fall into a particular age group where we’re used to making accommodations.

SS: Absolutely. So that brings us to a question of systems, and you mentioned your work has evolved into really thinking about systems and how systems play into these things that we see happening at individual, interpersonal levels. And I think part of that is thinking about ableism and what ableism is and how ableism shows up in healthcare in many different ways. Can you talk us a little bit through that, because for some people this idea of ableism is maybe a new one, that may be something that they haven’t quite grasped where that system level ableism at how it shows up in the things that we do everyday as physicians and healthcare providers. Can you talk a little bit about that?

YL: I think ableism… there’s sort of big, obvious Ableism with a capital “A.” So, when we talk about things like denying someone a particular life saving treatment, or making decisions about somebody that is different because they have a disability than if they didn’t have a disability. And there’s some very extreme examples of that that we’ve seen, for example, during the pandemic. But ableism can also be with a little “a” and it’s some of the things that we don’t even give thought to at all, it’s just, kind of, we all have understandings or biases, or things we know and things we don’t know, or assumptions. We can assume that obviously, doing this activity would make someone feel better, right? Or that everyone would want to do X, right? Or that this person wouldn’t really know or understand anyways what we’re talking about, so I think we probably can skip that part and just go right to their caregiver; why make them uncomfortable if they don’t understand it, so let’s not talk to them about it. Or this person obviously can’t make that decision, so maybe that means they probably can’t make any decision, so we wouldn’t involve them in their care. And I think how we talk to people, whether they can understand all of it or not, and also whether they can respond to us to show us that they understand it, that’s different than how we talk to people. They understand more than they can express to us and other people actually may know that better than us, especially if we’re new to working with that individual. And even if they don’t understand it, there’s still a way we should treat everybody in terms of how we talk to them and how we include them, and there’s many ways to include people.

So, I think ableism happens in a lot of very subtle ways and not just the very obvious ways. But sadly, I don’t actually remember using that word or even thinking about that word 10 years ago, even five years ago frankly. Or, if we thought about ableism, it was very much about why would we expect somebody in a wheelchair? What do we do in terms of how they’re going to have, for example, going back to a cervical exam? What happens with the examination table? Is it our job to make sure it goes up and down? Do we need to make sure we have an interpreter for somebody who’s deaf? So, there’s some very obvious things around ableism and things we would deny people in terms of their health care, but I didn’t think about it for people with developmental abilities quite as much until recently, because I just kind of assumed, “Well, that’s just how it is.” My own ableism on that: “Well, obviously, people aren’t going to be able to do that,” and not challenging, “Why is it that way? Why do we all just assume that’s okay? Why is it that we’re not teaching about any of these things? Why is it that we’re not —” There’s lots of areas, I think, where we need to take a close look at our own biases and our own practices.

SS: Absolutely. And I think that’s really important. In any journey of thinking about inclusion, equity, anti-discrimination — it’s really that self-reflexivity around, “Oh, where are my own biases in this? And how do I start to unlearn some of those before I then move on and take other steps.” And to understand that we are going to make mistakes, we’re not always going to get it right, which I think as clinicians can be challenging for us because we’re often taught that we need the diagnosis and we need the answer, and there needs to be this linear pathway to get us to this treatment plan. And being able to unpack some of that and challenge, as you said, why do we do it like this? We’re making an assumption that we can’t do it a different way. I love those kinds of self-reflexive questions as well.

One thing that you said was we’ve always done it this way. And, even for us, as siblings of people with developmental disabilities, we may have made a lot of assumptions about how things can be done in healthcare. That often manifests for people in current situations because of past negative experiences they may have had. So, if a person has had a particularly negative or even traumatic, challenging experience with health care, that can make subsequent interactions with a healthcare provider or healthcare system very difficult and very scary. Can you talk about this idea of a trauma-informed approach? Again, that may be a term that is fairly new for some folks, but just explain to us what that would look like and mean for somebody with a developmental or an intellectual disability.

YL: I think having that trauma-informed lens is so important for everybody that we work with. But again, we may not think about that when it comes to people with developmental disabilities. But if, for example, you had to have blood drawn and the only way you could do it was the only way people thought it could be done was to do it quickly — hold the person down and really scare them. Or a dental procedure, or any kind of — it might just be there was an emergency. So, it wasn’t so much that people did things in a very invasive way in the emergency, but they just had to go to an emergency department, which was terrifying. Talk about bright lights, talk about a hectic back-and-forth, not having privacy, lots of sounds, and you’re bleeding or you’re in terrible pain, or they’re doing things to you quickly and you don’t understand what’s going on. So, a space can be a triggering thing. Being back in that same kind of space, seeing people who are wearing that same white coat, people in masks, having to have your body in a certain way, having to be on a certain kind of bed — anything you associate with that experience that felt scary to you and out of your control last time can come back when you’re in a similar situation, or something that feels a bit similar the next time.

And I think it’s really important for us to recognize, “Look, traumas happened.” Whether the trauma was a medical trauma, or whether it was just a really sad event or something that happened that sort of feels connected in some way to what’s going on here. So, for example, you’ve got something wrong with your heart or your chest hurts, but you also have someone in your family who had a heart attack. “Am I having a heart attack? Does that mean I’m going to die because I remember when this person died.” So, it might not even be about what’s happening in terms of how everyone’s interacting with that person at that time. But it’s also how they’re thinking about what they understand of this event as it relates to something that happened before. So, helping people, again, to have some agency, some sense of control of what’s going on, understanding people’s past experiences, things that work well for them, things that have been scary, can help make a more informed kind of interaction. I always say whether we’re doing therapy with somebody or just having some kind of encounter with them, it is in a sense a kind of treatment, right? Because it’s going to make them decide next time whether they want to have this treatment or this kind of encounter again. And some people are very fearful of healthcare environments because of how they felt they were treated or discounted or harmed, or how scary it felt for them prior. And so, it’s our job to make sure we understand that history, but also to make sure that in this interaction, we do something that doesn’t add to any prior trauma if we can.

SS: That was so eloquently articulated. Thank you for that. I’m thinking about my own experiences with my sibling and there was an article that we both contributed to (that we’ll link in the resources here) around some of his prior experiences with healthcare and how that has really made him fearful about future experiences. But then, how a really compassionate and thoughtful experience undid a little bit of that. It’s not going to undo all of that, but it really did help in making the next encounter for him perhaps just a little bit more tolerable and manageable and less scary. So, I think we really all do have a role to play in that. And I think sometimes we underestimate our ability and power as individuals in the system to actually enact those kinds of changes. I think when we think about systemic change, it can feel so overwhelming. And then we have to remind ourselves that we’re part of this system and we can make change that can be actually really meaningful.

YL: And also that we can work with the people we’re talking about to figure out how to make some of those changes, as well as the people who know them really well. If we’re trying to figure out how to make those kinds of things work differently, I’m sure in your situation with your brother, they’re important things to them and also to you — you have ideas about things, as well, that could make a difference. Sometimes healthcare providers think they’re just supposed to know what to do. So, they’re like, “Oh, I got to know, so I’ll just know.” But they don’t know and that’s okay. Thinking about ways to find out, to spend that extra bit of time with people to figure out what would make a difference and what’s important can really go a long way.

SS: Yeah, because people are not monolithic. Everybody with a developmental disability is not going to have the same challenges or the same things aren’t going to necessarily work for all of those folks. So, being open to having those conversations from a place of humility and curiosity, I think is a huge step forward for us.

I know that one of the very practical things that you worked on with a team of people was a written document that people and their caregivers and families could fill in ahead of time, and actually hand to a healthcare provider, and it had a lot of that information that you’re talking about, right? Like what works for this person when they’re getting their blood drawn, what works for this person in terms of whatever those things may be. To me, that’s a really helpful, practical tool for healthcare providers, for physicians. Can you talk about some of the other individual level kinds of ways that providers can do what we’re talking about: tune into that patient’s needs, try and figure out what is going to work, and be less traumatic?

YL: I think, for sure, that sort of information makes a huge difference. So, making sure you have time to review what that information might be. So, we have different kinds of tools we’ve developed together with the Developmental Disabilities Primary Care Program that’s housed out of Surrey Place in Toronto. But these are tools that look at things about my health. So, really an overview of who I am and what’s important to me. And I’m saying “me” because, again, it’s a patient-centred tool. So, even if the “me” in that case can’t talk about all those things themselves, the focus is still on them. So, instead of just filling out the form that we do because we’re a staff or we’re a parent or sibling, it’s their tool, it’s about them. So, we use “me” on purpose. So, there’s about my health or today’s health care visit, and it’s really about how we exchange information.

So, there’s stuff we can think about before we’re in a really stressful or emergency kind of situation. What works, what’s really important information to everybody to know or understand about communication, about things that would be very stressful in interactions, things that would be really helpful. And also, what would be important to know before going into a kind of procedure, about what that procedure is going to be like, and then also a bit of the kind of communicating of what actually took place. So, that can be sort of understood and remembered, and followed up on after. And also reflecting on what seemed to work here — did we just discover something that works amazingly well? Write it down. Make sure next time we do well too. Or does something not go so well? So, how can we see about changing that next time? I think communication is very two way — it should be. Thinking about that stuff in advance is helpful.

I think time is really important. So, whether it’s time of day of an appointment or just how much time there is. I think this idea that we have to do this procedure, we have to do it at this time works great for some people; but if it doesn’t work great for a particular person and it ends up being a very traumatic visit, that’s a failure. Maybe it’s advantageous and even financially advantageous, and certainly emotionally advantageous, to plan a shorter visit that’s just an exposure visit that’s just building the relationship or where the goal is not to finish a procedure; the goal is just to get into that space and be familiar with that space. So, sometimes now with virtual and with technology, we can do different ways to kind of orient ourselves to spaces without even going into them or understanding what procedures are about. And there’s a lot of prep things, for example, if we’re giving somebody an MRI, sometimes people go into scanners that are not the actual scanner, so they get the practice of what that experience is about. Sometimes having a tool, if you’re going to be doing a vaccination or something, but there’s something you can practice with at home that’s not the real vaccine. But so, sometimes, even in the visit itself, being able to hold an instrument or an object. So, if you’re going to be checking my heart, can I also check your heart. Like other things we can do to be more familiar with things and having a goal that is maybe a smaller goal or that we’re going to do this procedure over several visits. Or, “Yes, usually we just do this one-on-one, but I can see how in this situation somebody you really trust and like also needs to be part of it.” Fantastic! How do we do that? Or, “Usually we do this on an examination table, but sure we could do it in a car.” Or, “Sure, we could do it while you’re watching a movie you really like.” So, having more flexibility for how things are supposed to go, I think, is really important. And recognizing you’re not supposed to know how to do this. Humility and curiosity, as you said, is so important. And to feel like there should be time. There’s only so much time in that one visit. We’re thinking about a person’s whole life, and how they interact with and trust this whole healthcare system. So, I think taking the extra time, especially when there’s challenges, is going to affect their whole trajectory of using health care later.

SS: Again, really, really helpful, Yona. And I’m thinking about examples from my own practice as an anesthesiologist. I know you and I have talked about this before, but really taking time in the preoperative appointment to think about, “Okay, is it the mask on the face that’s going to be challenging? Is it the IV that we’re going to put in that’s going to be challenging? Is it lying down on the operating room table that’s going to be challenging?” And really taking time to explore that, as you said, beforehand, so that we can then try and create as much as possible an environment that is going to be less stressful, which, to be frank, is also advantageous to the healthcare team taking care of that patient. We talk about efficiency in operating rooms all the time. If we are going to make that experience much smoother and less scary and less traumatic for that patient, then things are going to move more efficiently for us that day in the OR list. So, I think sometimes there’s this misnomer that we don’t have enough time and we just don’t have time to do that in our busy days in health care. It’s so efficiency driven and I think really just backing away from that a little bit is something we all need to do.

YL: I was going to say the number of people in that team when that procedure doesn’t go well, where their time was used and it wasn’t a good outcome — we don’t need everybody to be involved in the operating room to do that prep work, to get ready for the anaesthetic or whatever. So, we can think about how we use our health team and who we use in the health team in pieces, and over time, I think, that can make a difference. It’s everybody’s job, right? You know, it’s your job; it’s the nurse’s job in that operating room, it’s the person who is booking the appointment. We wrote a whole article on office staff and primary care and the family health team, and what an important role they play in terms of really setting things up for success. If we’re going to work on an initiative, everybody in that team has a role to play.

SS: Definitely. And I think that’s where education becomes really important. And I’m also thinking about what you said earlier around paediatric care. I mean, this is pretty standard for paediatric care — the child life specialist will meet with the child before the operating room, they’ll get to hold the mask, they’ll get to practice on the stuffy or whatever it is. So, it’s not that we don’t have those skill sets in healthcare and we haven’t learned about those approaches. It’s just about understanding that we may have to apply these approaches not just to kids, but to different populations of people. And so, I think that’s a really important point that you raised earlier.

We could talk for a lot longer, Yona, on this topic. And to that degree, I think we would like to ask you, because we are coming to the end of our time together for today, but what resources or supports would you recommend for people who do want to learn more. Because the point you made a couple of times during our conversation about, you know, we don’t necessarily have to know how to do this, this is really about how do we learn an approach? How are we open and curious? So, what resources would you recommend? And we’re going to link some of those into this episode.

YL: I think if people won’t read or do anything else, that simple humility and curiosity goes a really long way. But I think if you want to understand more, maybe about the population, again, keeping in mind that what we already know applies to different groups. So, don’t forget the skills that you have working with kids or working with older adults. And then specifically for, say, adults who have developmental disabilities, we do have, as I mentioned, those primary care guidelines that have been published in the Canadian Family Physician, and they’ve been updated a couple of times — we’re in our third iteration from 2018. And there’s a whole bunch of really great tools that are attached to those guidelines that can be used in the point-of-care. Some of those things are online, some of those things are fillable PDFs, some of those things are just tip sheets. But I think that’s a nice place to start.

And also, anything you can read that’s actually written — again, I think your patient knows a whole lot. And so, it is really anything that you can read that’s written by people with disabilities around health care and by families, I think is really important as well. So, I can share some of those links and our program, H-CARDD, has a lot of resources and things, as well, that I think can be helpful.

SS: Great. Thank you so much for your time today, Yona. As I said, we could talk for another couple of hours, I’m sure, easily, but we really appreciate you spending time with us and sharing your wisdom both from your lived experience as a sibling of somebody with a developmental disability and from your expertise as a health care expert in this space. So, thank you so much and we will link all those resources for everybody. Okay, take care, everyone and thanks again.

YL: Thanks.

Closing:
Thank you for joining us. Please visit CPSO Dialogue for more in-depth discussions about health care.