Including Disabled Peoples' Voice in Consultation, Service... / UX & Content / Leo Goldie-Anderson

Tēnā koutou katoa. Ko Lea Gordin Tokiwa. Um, I am as is written here, the chief advisor for disability at Te Whatu Ora Health New Zealand. Um, and I need to tell you a little bit about myself so that you understand the context of the talk because there's quite a lot of stuff in it. So, I am a New Zealand sign language interpreter by trade. I've done that, well, been qualified to do that for about 17 years. Um, but I began working in the health system about 7 years ago, which if you can count and have not had a time warp completely uh change your sense of the passage of time, that's right before COVID hit. Um, so I've ridden the health system through COVID. Um, during the lockdown and the initial start of COVID, I was facilitating the uh alternate format and accessible information efforts to try and make sure all the waves of information coming out were accessible to disabled people through the lockdown and the initial stages of the pandemic. Um, once that finished, I moved into leading the disability equity work for the Capital Coast Hutt Valley region for um testing, immunization, care in the community once people actually started getting sick. And I have also Am I a bit far away? Cool. I've also uh spent a lot of time during that time as part of the establishment of Health New Zealand and contributing to the disability section in the first New Zealand Health Plan, which created the disability health function in our health system for the first time. Talk about more about what that means as the talk goes on. But since then, my work has really somehow ended up in the digital and data space despite me not being a digital or data person. Um, so my take on it is really coming from a multitude of hats and a lot of what other people tell me so that I can synthesize it, put it together, and hopefully communicate it well to the various people involved. I'd love to tell you in detail about all of those projects, but that would be my own entire conference. So, I won't do that. Um what you need to know is that's my job title. I am also disabled in a sneaky way. You will never know, or maybe you will, unless I tell you. It's not always obvious. And we at Disability Health in Health New Zealand are a predominantly disabled team with disabled leadership. So, that's a really important perspective to know as we go into the talk. So, the topic of my talk today is including disability community voice um when we're service designing, when we're doing our digital project work, when we're delivering things that are going to make life better for people, particularly in the health system. And it leads to a lot of words you will know like engagement and co-design. And I am going to tell you to do those things, but I'm going to get there in a bit of a roundabout way. So, we've been engaging with the disability community for a really long time. And by we, I mean all the public sector agencies, a whole lot of private sector agencies, anyone who's doing any sort of project that impacts the public. Um and it's really it happens a lot when we're writing a strategy, or when we're doing a plan, or when we've got a really specific project that we need someone to test some things. So, we're usually talking really high level, what is the problem, what is the vision, what are your experiences, or really really detailed. So, can you read this? Can you work this thing? Um and the disability community have been really engaged with. They have engaged and engaged and engaged. They have been engaged, and they have said a lot of stuff over the last couple of decades. So, I'm going to summarize them here by looking at the New Zealand Disability Strategy. So, for the 2016 to 2026 Disability Strategy, when the community was engaged with, they said, "We want choice and control and support to make our own decisions about our own health." Awesome. We want the health system to remove barriers, make services more accessible, easier to use, work better for us. Awesome. We also want to be respected and valued. We want to be included. We want to feel like we belong and like we're welcome in the health system like other New Zealanders are. Sweet. So, that was 10 years ago and a lot's changed since then. We have a whole new national health system. Instead of 20 DHBs, we've consolidated into Health New Zealand. We've got Whaikaha, which is a ministry for disabled people. Health New Zealand has a disability health function and we've got a new disability strategy. So, we were consulting on that last year and we asked the community what they wanted. And they said the exact same things in pretty much the exact same ways. So, every high-level engagement I've ever been part of or run or seen the results of has pretty much said the same things. We want self-determination. We want to be in charge of our own journey. We want to make our own decisions. We want to be consulted about stuff that affects us. We want to do it in our own way. We also want the system to take responsibility. We want you to do your part. Essentially, there's a whole bunch of stuff that we can't do that is your job to do. We have the same rights as everybody else, particularly to health care, and you have a responsibility to provide it. So, are you? That's kind of your job to work out. But in the end, we need to be able to talk about it because the system can't just decide to take responsibility and plonk a solution on top of people who want self-determination. So, this needs to be a joint effort. We need and want that conversation. We as disabled people are whole people. We're not just a little segment of the population over here or a specific part of a body over here. We are whole people, we've got a lot of things that we know, a lot of things that we need, and we need you to connect the dots. So, why can't we do it? Why do we have the engagement telling us the same thing, and we're really, really struggling? We're still getting the same feedback. Um I'm going to try and connect some dots, mostly by talking about system responsibility. So, the health system, like most systems, runs on data. It affects our funding, and informs our prioritization. We have to show what we're doing, and why we're doing it, and why it works, and why it matters, and why the outcomes are changing, right? We don't have very good disability data. Uh we have very limited information from the household disability survey, which comes from the census. So, at the moment, it tells us 17% of the population are disabled, and everyone else is not. But, that answer changes depending on how you ask the question. Because when they asked that question, they said, "What level of functional difficulty do you have with these specific tasks?" And anyone who said, "I have a lot of difficulty, or I can't do it at all," got lumped into that 17%. But, if you look at everyone who said they had any level of difficulty, we get that 34% number. And if you put those two together, we get 51% of the population who have some level of functional difficulty in some domain. That's still pretty vague. It doesn't tell us a lot about who those people are, or what they need. And it's also not a very helpful data source, because it can't be compared to the last survey, which was 10 years ago, cuz they asked different questions. And it can't be compared to the next one, because they're not going to do it anymore. The census is changing, and isn't going to be working the same way it used to. So, we can't really just plug that into the health system, and go, "Where is everybody?" Um disability in Aotearoa doesn't really look like that, anyway. It's nice to put us off in a section of a pie chart, uh but we're not there. We're actually in every other community. It looks more like this rainbow here where we've got a whole bunch of different groups of people, different ages, ethnicities, cultures, languages, sexualities, everything. All of those groups have disabled people in there somewhere. We can't really see where they are, we just know they're there. So, that's this yellow overlay in the middle. It's more like that than it is like that. But in reality, that overlay is more like this, which is a giant black hole. And I call it a black hole because in space you can't see that. You can't see it or measure it, but you know it's there cuz it's pushing and pulling on a whole bunch of other stuff around it. Um so, we know that there are problems in the health system that come from not seeing disability, from it being invisible. But getting that data has never been done. It's really complicated and it's really expensive and trying to sell that to people gets put in the too hard basket really fast. Because we don't have it, we're not measuring anything. So, we can't see what the outcomes are, we can't compare them to anyone else's, and we can't say, "Ooh, we should probably improve them." Because we can't do that, we aren't accountable because we can't count, right? We can't report on outcomes, we certainly can't say what we're improving if we can't count it. And finally, anytime you need to change something, you get asked, "Where's the evidence?" And if you can't count, and you can't measure, and you don't have the evidence, you don't have a problem, or at least not a problem that anyone's going to fund, right? Or prioritize. It also, even if we counted everybody, that doesn't necessarily tell us what the health system might need to know. This overlay now is access needs. So, what someone might actually need in person when they come and interact with a health service, whether that be in person or online or in some other way. If you just look at the population numbers, you might say, "Well, all of that 17% would be the ones who have access needs." But, not all of them will. Some people say, "Well, I have difficulty lifting a milk jug, but I can go to the doctor and talk to them about my health and go home and take my medicine just fine." A lot of people who don't get picked up in that number or who get picked up in the 34% number might have access needs we don't know about because it's not a one-to-one correlation. And a lot of people who do have access needs are never going to say, "I identify as disabled" or get picked up in the data. They're just like, "Well, I just need a hand going up the stairs, right?" And in reality, this is what we have. We have a big blank circle. We don't know who anyone is, but somewhere in there people need to access something. So, at this point, if you're starting to plan a project, you go, "I think we probably need to start asking people. We probably need to engage, right? We can't get this information from anywhere else." Let's talk about it. So, we ask. And it's terrible. Right? You go out, you're like, "I've got this project. I've got to do something. I want to design this app or I want to design this system or this service." You go out and you start asking people, and they tell you all of this. They're trying to access health care. They are hitting barriers every step of the way. They're having bad experiences. Those bad experiences are leading to pretty terrible outcomes that we're not measuring, but they are experiencing. And because of all of that, they're less likely to engage. They might delay. They might give up entirely. Um or they might feel like they've actually been denied health care. And sometimes that's true. That ends up in much higher need. People are using emergency rooms more. There's higher mortality. There's mental distress. All of these things look really, really bad. And when you are talking to people, they really, really struggle to not be living in this bad space, right? Because someone wearing the same badge went and asked them the same thing last year. And apparently none of that's been passed on. Nothing's changed. You're asking about the color of the curtains while they're like the walls are actively on fire. And they're educating you as you go along because you're like I had no idea about any of this. I just came to ask you questions about whether your screen reader can go through my like app channel thing, whatever it is that you're trying to ask them. Um from a project perspective, usually kind of you go oh my god, you take all of this, you really struggle to get the answers you want, and it goes back into a report and gets shoved in the too hard basket once again really, really fast. So you think, well, maybe we can talk about the system responsibility side. So you ask them. And you get a very similar story, right? Except it's coming from a system perspective. People go, "Well, we have no systems, so we have to make them up as we go along. I'm a nurse and I'm meant to be doing nurse stuff, but I'm trying to run around and figure out who funds sign language interpreters, and I don't have time for that. So that person's going to sit there and wait for 6 hours and then maybe go home." Um we don't have the capacity and confidence. Our systems aren't connected because people aren't engaging with public health or prevention like screening or immunizations cuz those aren't accessible. They're struggling to get into primary care. It ends up being an emergency. Um so we have higher emergency department use. 39% of disabled people went to an emergency room in the last year. And that's just people, that's not visits. That's massively higher than any other group. We know they're more likely to get hospitalized, stay longer. We struggle to discharge them. So we can see all of this issue in the system side of things. Um and it overlays with the community experience, too. We've got two voices telling the same story from different perspectives. But we are really, really struggling to connect them because our quantitative data where we normally connect experience to outcome doesn't have it there. It's invisible. Um because disability and then disability is invisible in our project planning because we can't make the connection. We usually don't get to the qualitative bit. This bit until we've already started a project and decided we need to engage. We don't start projects on the um qualitative part of things. So, this this data layer comes back in over the top and goes, "Well, you found all this stuff out. We can't really do anything about it because we can't measure it, so we can't prove it's working." Awesome. Woo. So, that's my little rant at the beginning. Um what it leads us to is how do we actually engage to get anything made? How do we make sure we have this information in a way we can prove so that we can feed it into better delivery of whatever we are trying to deliver. Um and I'm just going to walk you through a really blunt example. When we talk about accessible in the health care system, we're often talking about slightly different things because accessible health care is a really big buzzword. When you start to drill down into it, most people are actually talking about is it affordable and is it nearby? Right? So, can people in their local area get there, pay for it, get what they or not pay for it, get what they need and go home. When you start to ask about accessible accessible for disabled people, we're often starting to speak a bit of a different language. And so, we end up with accessible solutions that don't really consider disability at all. So, this is a as I said, a really blunt example. We need a better booking system. They're all ad hoc. Everyone's just calling up on the phone or sending through an email and it's different here and it's different here and we need to put them together. So, the first step is let's go out and talk to people. Excellent. We need a digital solution so that it can all all the systems can talk to each Everyone agrees it would be easier to do it from their phone. Great. We need it to be consistent, national, one way to do it. Awesome. We made that. Now people can book their appointments. Sick. But, if we have not We and we might engage at any point along this line. I'll talk about that in a second. But if we have not engaged right at the beginning and said, "What is this actually going to mean for disabled people and their access?" And we don't identify the access issues that are invisible to us with the information that we have. We don't get to the point where the digital solution has some problems, right? There's low digital access and literacy in the community. Uh particularly for disabled people. And the digital solution itself might not be accessible. People might not be able to read it. People might not be able to use their technology to engage with it. We haven't picked that up. So, the digital solution gets made, it gets rolled out, it replaces all the other channels, and suddenly people who were able to just pick up the phone and call their local doctor, now can't because all those numbers have been taken off. They can't figure out how to find that number. They can't figure out how to ask someone for that number. And they've got an AI chatbot going, "Would you like to book an appointment?" And they're going, "No, I need to talk to someone cuz I'm going to need a sign language interpreter when I get there." AI bot doesn't understand the question, right? And so, now more people can book their own appointments means that actually a whole group of people can no longer do that independently. They need to ask someone else. They need to have a different way of doing it. They need to spend twice as long to find the number and call someone and figure that out. And we haven't seen any of that. It remains invisible because we're not monitoring or reporting on it. Quite often we engage uh around about here. And we get a lot of information from people about why it's a bad idea. And we go, "Cool, but we've been funded to make it and it's due by by end of the financial year, so we will put that into the next bit and carry on with what we're doing. Um or we engage here. And people are this is And we're like damn. Right? My funding's finished. >> [laughter] >> Um and that's a really, really common thing that happens. But I just want I'm using this to basically point out if we don't consider it, if we don't think what impact does our work have, it will have an impact. It's just not the one that we think it will. And that's where we get to things like, oh well, we have delivered what we were asked to deliver. That's not MVP. So people needing a bit of extra support, people needing a different channel, people needing something quite specific 20% of the population, maybe less, um not MVP, we'll do it in the next round. There is no funding for the next round. There is no continuity of roll out or change process for the next round, but because it's not MVP, it gets shifted. Um we go that's not digital delivery, we're funded for a digital solution. That's a clinical issue, that's an administration issue, that's a something else issue. Um you get people being like, what? We just built this whole cool app, it's way better, and you want us to what? Go build a call center? Like you can't just do that. That's not the way of the future. And then we end up with disability's so difficult. Disabled people are so difficult, and putting access in is so difficult and so expensive. Right? Um I feel like I've spent a lot of time talking about problems. And I would like to walk that back a little bit and make sure that you understand I'm not just yelling at you. I've been on both sides of this, and I've spent more of the last decade on your side of it than the community side of it. And I'm very used to getting yelled at by people. And I think it's fair enough that they yell at me, right? Because I'm doing the same thing. I'm hitting up there and being like, let's talk about the curtains." And I know the walls are on fire, but I can't put that out yet until we do this step-by-step. So, we actually did some work a couple of years ago where we did some engagement on engagement. We asked the community, "How are we engaging with you now? Is it working? How would you like us to engage with you?" And they said quite a lot of things, but they basically said a bunch of this. They said, "You keep engaging with us. Stop doing that and start doing something, right?" So, we're using engagement a little bit as a catch-all and as a tick box and as a way to make our projects look a little bit better, but it's not meaningfully impacting what the projects actually deliver. And there's a whole bunch of systemic reasons for that that I've kind of outlined here, but the community really want to be involved. They really want to be talked to. They've got heaps to say, and they're struggling because we keep having the same conversation with them. So, they want us as the system to start taking some of that responsibility and going, "What should we actually already know? And how are we coming to this at a level where we can meaningfully engage with you? Where we can show you that your engagement is working, and where we are all together progressing forward into the state that you're looking for." So, they're very willing to work with us, but the way we're doing it is not quite working. I think that this is the best diagram for you to think about if you were doing any sort of project, if you're doing any sort of service design. We are not going to be able to magically come up with the numbers of who all the disabled people are, where they are, what they need, how they use X, Y, Z. I'm working on it, but it's a really, really, really big task. Um we know that there's a whole bunch of people who have access needs, and we know that those people are in every single group that we could possibly be targeting. If we are trying to deliver something to older people, to parents, for a maternity pathway, for a specific disease like cancer, for anything, there are disabled people in that group. We just need to take that as read. And we need to jump straight to our system responsibility hat. So, if we can improve the baseline way we're approaching these projects, we're not going to magically fix it all. But, we can start to ask instead of as the successible, we can look at it from a disability community perspective and say, "Is it accessible, not just affordable? Is it appropriate? As in, is this the right thing that's going to work for this group of people? Is it available? Can they actually get it?" This is where we get into digital literacy. And is the quality the same as it would be for someone without a disability or without an access issue? Those measures come or those questions come from the UN looking into health and what would make services more accessible. They said that they should be accessible, appropriate, available, and good quality. We can then see what happens. So, we need to actually try, start to measure it so that we can then engage more meaningfully. So, we need to do this whole side before we can just go out and engage, right? We need to go, "What do we have? What do we know? What can we do? How could we measure it?" And then we can go, "All right. So, who do we actually need to talk to? Is it the advisory group that's been sitting there for the last 10 years advising on everything across government, um, and they're very, very experienced and very, very smart, and they know their stuff, but they've said the same thing for 10 years, never seen it change, and none of them have had babies, and this is a maternity way. Right? Are we committing to long-term? Are we actually committing to a relationship when we engage? Um and that doesn't necessarily mean with the same people, but it does mean with the same output, with the same outcome. Are we continuing to commit our prioritization and our funding so that we can show it is changing, not stopping and starting every second. And can we actually understand the impact, identify the gaps, and target the improvements so it becomes a bit more long-term? It would look a bit more like this. A more responsible system responsible accessible solution. So, we need a better booking system. All of this stuff is still the same. But if we're asking the disability questions at the beginning and identifying how it might impact accessibility, we can then identify what we don't have or what it's not going to do, and we can say that outright. Right? We can say, "Well, these are the standards we should be meeting. We're not or we are, but there are still some gaps that we don't have." Um and then we can make a long-term plan. So, it might not be MVP, but if we're committing to it over the long term and we're saying, "Hey, through subsequent iterations, we are actually going to target some of these gaps. We are going to make sure that some of these things are filled in." It becomes a lot easier if we've achieved the baseline standards, if we're not trying to solve that whole purple circle where everything is just bad. We can go, "Okay, well, we've at least fixed the fact your screen reader can do it. It's in the right plain language and these settings are working so that you can control them to your liking." Then we can say, "All right, so what's the issue if those things are not quite enough?" And it becomes a smaller or more discrete problem to start solving. And then finally, the project management basis of our work can be a real problem because we say we've delivered it and now people can do this. Can they? Let's check. Let's make sure we've got some feedback mechanisms. Let's make sure we are actually seeing if the solution is working, and that may not be so easy when you are funded financial year by financial year, but it's something that you can think about within your own operating model. So, you may not be able to do it for your project, but you may be able to say, "Hey, when we deliver solutions, we like to include these feedback mechanisms. We like to make sure that these things uh the standard way we deliver something to make sure this community is uh considered. So, I'll leave you with some questions that we are asking throughout the health system at the moment about everything. So, not just digital, not just data, but any sort of service planning policy. How will this work affect disabled people? It's not will this work affect disabled people, because it will. Um we're in every group. It will affect us. And if you don't think about how those consequences or that impact will be unintended. It may not be what you expect, and it may be something you never see, but it is happening under the surface, and we can prevent it quite easily by asking these questions at the start. How are we going to actually understand and show the impact? Sometimes that's showing the negative impact. So, quite a lot in our planning, we're saying we need to call out that this data doesn't exist. We need to say we don't know the outcomes so that we can start to solve it later. What should we already know? What are our standards? And then, how and who should we meaningfully engage to make sure we get the right information for the right work? And finally, how does our planning reflect these questions? Is accessibility and standards and a baseline model of doing this well part of procurement? Is it part of your RFPs? Is it part of the way you do things so that it starts to get built in, and it doesn't become an add-on at the end every time? Often when you do it at the beginning, it is not as expensive or hard as you think. So, that is a very fast rundown from me. THANK YOU VERY MUCH. >> [applause] >> THANK YOU SO MUCH. THAT'S AMAZING. WE HAVE LIKE 2 minutes for questions, so if there's a burning one, that would be great to hear. Really amazing. >> Hey, that was awesome. Loved it. I just would love to hear your take on how government in particular that everyone could be a bit more intersectional in their approach rather than just like as opposed to one person with a disability, tick. And try to like unpack those different layers. >> Yeah, it's an incredibly important question. Um we What I haven't gone into quite deeply here is the the strength of the UN human rights-based disability um convention and approach. Everything Sorry, everything in New Zealand relating to disability goes back to the UN Convention on the rights of people with disabilities. Um and that has a really strong partnership with Te Tiriti. So, we need to make sure that everything we're doing funnels back up to our responsibility to those fundamental things. What that looks like in practice can be really, really challenging. So, for the data project that I'm working on at the moment, we've established a very specific, targeted advisory board essentially based on Tangata Whenua Māori representation, Pacific representation with disability, and our attempts to in a small group get as wide a cross-section of representative people who are reaching further and further and further with their networks as we can. It's not a one-and-done. You can't have the same people for everything, but you need to have it in mind and it gets even more challenging when you start to think about we need uh other groups, too. But, keep it in mind and start there, I think, and you will find the way.