Progressing health equity for persons with disabilities – Darryl Barrett, WHO (Part 1)

Our guest this week is Darryl Barrett, technical lead for disability with the World Health Organization in Geneva, who joins us to discuss the WHO Global Report on Health Equity for Persons with Disabilities. The report was released in December 2022, 10 years after the publishing of the World Report on Disability in 2011.

An estimated 1.3 billion people (16% of the global population) currently experience a significant disability. The WHO report highlights that while some progress has been made in recent years, the world is still far from realising the right to health for many people with disability. 

In this episode, we discuss: 

• The significance of the WHO Global Report on Health Equity for Persons with Disabilities.
• The contributing factors that lead to health inequities for people with disability.
• Intersectionality and the compounding discrimination that women and girls with disability are more likely to face. 
• How we should consider moving forward to improve health outcomes and equity for persons with disabilities. 

 You can access the WHO Global Report on Health Equity for Persons with Disabilities, December 2022 here: https://www.who.int/publications/i/item/9789240063600

We encourage you to join the conversation on Twitter at @CentreHealthSec. 

Transcript

Please note: We provide transcripts for information purposes only. Anyone accessing our transcripts undertake responsibility for assessing the relevance and accuracy of the content. Before using the material contained in a transcript, the permission of the relevant presenter should be obtained.   

The views presented in this podcast are the views of the host and guests. They do not necessarily represent the views or the official position of the Australian Government. 

Larissa Burke 00:23

Hello and welcome to Contain This, I'm Larissa Burke, gender equality, disability and social inclusion adviser at the Indo Pacific Centre for Health Security. I'd like to acknowledge the Traditional Owners and Custodians of Country throughout Australia and the Indo Pacific region. We recognise their continuing connection to land, waters, and community and pay our respects to Elders past, present, and emerging. This episode is the first of a two-part series on disability and health equity. Today, we're joined by Darryl Barrett, who is a technical lead for disability with the World Health Organization in Geneva. The focus of our conversation today is the WHO Global Report on Health Equity for Persons with Disabilities, which was released in December 2022, 10 years after the publishing of the World Report on Disability in 2011. An estimated 1.3 billion people, or 16% of the global population currently experience a significant disability. The WHO report highlights that while some progress has been made in recent years, the world is still far from realising the right to health for many people with disability. Darryl and I discussed the significance of the report, including some of the contributing factors that lead to health inequities for people with disability, what the opportunities are, and how we should consider moving forward to improve health outcomes and equity for persons with disabilities. We hope you enjoy the conversation.  Thanks for joining us, Darryl. We're just going to talk a bit about the Global Report on Health Equity for Persons with Disabilities, which was released in December 2022. Yes, it'd be great to hear a bit more about the significance of the report.

Darryl Barrett 02:07

The report comes the direct request of member states through World Health Assembly resolution from 2021. And all WHO member states requested the Director-General to develop a report on the highest attainable standard of health for persons with disabilities, and also to update global prevalence estimates for disability. So the report is significant in the fact that it has been requested by countries. And on top of that the report is significant because for the first time, it highlights some of the contributing factors that lead to health inequities for persons with disabilities. And on top of that, you know, it's been 10 years since the publishing of the World Report on Disability that, WHO and the World Bank released in 2011. So it gives us an opportunity to really look at what's happened in the last decade and and how we should consider moving forward. 

Larissa Burke 03:07

So Darryl, can you talk a little bit more about the main findings of the Global Report?

Darryl Barrett 03:14

Sure. So there's four real main findings, or there's lots of findings, but four key ones to highlight. One is that we updated the global prevalence estimates for disability. And everyone will be familiar with the 15% of the global population that experiences disability, we now have updated that to 16%. So 16%, which today equates to about 1.3 billion people who experience significant disability, and that equals about one in six of us. And so it's a significant number of people. And certainly for the health sector, it's a number that can't be ignored anymore, to be able to put on the table and say, when we're investing in health sector reform, we need to make sure that this population group, because they are a significant number, are not left out. So through all the research that we did, and we looked at almost 20,000 different publications, we did consultations in all six WHO regions, and at the global level and with various civil society organisations, including representative organisations of persons with disabilities, and through all of that work, in a nutshell, there hasn't been a lot of change in the situation for persons with disabilities when it comes to health. In the last decade, we see the same sort of issues come up in terms of attitudes of health workers, models of care that are provided, the disaggregation of data, a range of different issues still remain today that we saw 10 years ago. What we do see though, is more evidence on some of those issues, so 10 years ago, we had, you know, a handful of information around the situation. Now we have a lot more evidence, which means we have a stronger basis to make recommendations on what needs to change moving forward. 

Larissa Burke 05:15

And you talked about the contributing factors to health equity, for persons with disabilities, what are those contributing factors?

Darryl Barrett 05:23

Yeah, so in the report, we break down the contributing factors into four main areas. But what might be interesting to highlight first is that the reason we break down those contributing factors is because the evidence has shown us that there are three really important inequities that are experienced by persons with disabilities. The first is earlier death. So the evidence has shown us that people with disabilities die up to 20 years younger than the rest of the population. We also see that many persons with disabilities are up to double the risk of developing a range of health conditions like cardiovascular disease, diabetes, depression, so they're more susceptible to developing these health conditions. And thirdly, we see that the impact of inaccessible environments, they impact persons with disabilities' day to day functioning more than the rest of the population. So these three significant health inequities are really important because those inequities are not due to a person's underlying health condition, such as a spinal cord injury or blindness. But they're due to these unjust and unfair and avoidable contributing factors. And those contributing factors really come in four broad categories. The first is really social, societal level factors, so stigma and discrimination, or governance, governance and policy settings. And these contributing factors are really broad outside of the health sector, not just in relation to health, but they impact on people's health outcomes. The second are the social determinants of health. So these contributing factors are things such as poverty levels, access to education and employment, impact of climate change, a range of different determinants will, like for everyone, impact on people's health, but we know that persons with disabilities disproportionately experience those impacts. The third set of factors relates to disease risk factors, so persons with disabilities are more likely to consume alcohol, are more likely to consume tobacco, are more likely to experience obesity. So it's important that that we're aware of those because we need to be designing health promotion and prevention activities that are inclusive of persons with disabilities, because we know that they are disproportionately impacted. And then the fourth set of factors relates to the health system itself. And this is perhaps the most tangible place for Ministry of Health to start, and so that the health system factors include things like the attitude of health workers, financing, packages, models of care, accessibility of infrastructure, a range of different components in the health system. So those are the four main areas of inequities that we break down.

Larissa Burke 08:19

And how does that differ for different groups of people with disabilities? So women with disabilities, indigenous people with disabilities? Does that look different? 

Darryl Barrett 08:30

The short answer is generally, yes. So because what you're talking about is intersectionality, and compounding discrimination. So we know that, you know, persons with disabilities are often also they also have other identities, you know, there may be someone who is indigenous or somebody who comes from a different ethnic background, may be a woman, may be a child, may be an older person. And so there are a range of different compounding factors that contribute to the greater experience of inequity that persons with disabilities have. So in the report, we highlight intersectionality, and the fact that women and girls with disability are often more disadvantaged and more impacted by some of these contributing factors. In the report, we also highlight people with certain health conditions such as psychosocial health conditions, or mental health disorders are more greatly impacted by the quality of care or the poor quality of care, or the negative attitudes that that some health workers have. So definitely the layering of different factors, like your ethnic background or your gender will also impact on your experience of disability.

Larissa Burke 09:52

I think it's a really helpful way to articulate what this term were called intersectionality which I think sometimes people kind of struggled to grapple with what we mean by it. So I think it's really helpful to kind of think about compounding discrimination, layers of discrimination.

Darryl Barrett 10:08

Yeah, let me give you another example, which is also important for understanding disability. So let's imagine that we have two people, they have exactly the same health condition. So they're two people with the same type of vision impairment. So two people who are blind, they are the same age, they are the same gender. One person lives in Canberra, where we're discussing this now, and another person lives maybe in Sub Saharan Africa, or maybe in one of the remote islands in the Pacific. So their health condition is the same, their gender is the same, their age is the same, but their experience of disability will be very, very different. And that's because of the environment that they live in, the other contributing factors, you know, somebody who's living in a city like Canberra will more likely be able to access education, more likely be able to access employment, more likely be able to access accessible transportation, more likely be able to have recourse in terms of addressing discrimination. Not always, but more likely, somebody who lives in a rural or remote area of another country, where there is no there is no access to education, where there is very limited employment opportunity for people with disability, where maybe there are high levels of stigma because of poor awareness around disability, the same health condition, same gender, same age, but very, very different experience of disability. And those factors that drive that experience of disability is what we try and bring out in the report and what governments and health sector partners need to take action on. 

Larissa Burke 11:48

I wondered whether it might actually be helpful to talk about how we understand disability, because I think helps to really better understand those contributing factors.  

Darryl Barrett 11:59

Sure. So one of the things in the report we're trying to do is, is to make sure that ministries of health and health sector partners understand what it is we mean by disability. And often disability is confused as the same thing as a health condition. But it's not. Disability is an umbrella term that relates to the interaction between somebody's health condition like depression or spinal cord injury and certain factors in the environment. Those factors can be, you know, the built environment, they can be stigma and discrimination that might exist, but also personal factors like somebody's age, somebody's gender, somebody's socio-economic or ethnic background. So these three areas, the health condition, personal factors, and environmental factors, all interact. And that's what we refer to as disability. And it's absolutely important that we understand that because we are not talking about in this report, we're not talking about addressing the underlying health condition that contributes to disability, we're talking about addressing those environmental and other drivers that contribute to poor health outcomes for people with disability.

Larissa Burke 13:14

Thank you, that's really, I think, helpful to paint the picture of what we're talking about. Can we talk a bit about COVID-19 and what the report found around the impact of COVID-19? And any kind of insights you have around whether that's a bit of a catalyst for change?

Darryl Barrett 13:34

On the catalyst point, I think COVID has been a catalyst for a lot of different a lot of different issues in the health sector. It's been a catalyst for recognising that health security is the, you know, the flip side of strong health systems. And that's a message that is really clear, we can't have, you know, we can't have a good health emergency response if our underlying health systems are not up to par. And that's what we've seen. And that's why it's so important when we talk about disability because the barriers or the contributing factors in the health system, our long-standing contributing factors that have existed for decades. In terms of COVID itself, we know that people with disability during COVID, and COVID is still rife in many countries, during COVID, in those early days, in particular, people with disability were more likely to contract COVID. And this was often due to a combination of factors. Often they needed, they may have needed personal assistance and support services, or they may not have been able to obtain health prevention material related to COVID in an accessible format, or often they were just left out because they were not respected and valued at a at a higher level. So the transmissibility or the fact that the virus was more likely to impact persons with disabilities. Then we saw a second set of factors and that related to the impact of COVID. So when people with disability did contract COVID, often in relation to the underlying health condition, COVID was much stronger and much more powerful and much more debilitating in persons with disabilities. And then thirdly, we saw that persons with disabilities when they contracted COVID, were more likely to die compared to the rest of the population. And there are only two countries in the world that really disaggregated data in in terms of COVID and disability, and that was the UK and South Korea. But we have evidence from those countries of the impact of COVID in terms of deaths among people with disability. So pretty significant. 

Larissa Burke 15:45

Do you think that evidence would encourage greater attention to that level of disaggregation, moving forward? 

Darryl Barrett 15:53

I would hope so. I would hope that that one of the upsides of what we've seen in COVID in relation to people with disability is that there's more awareness of the need to prioritise people with disabilities as a marginalised group, in a risk in, you know, in our approach to COVID. And, you know, and we've seen this, I think there are examples from countries where there have been stronger engagement with civil society to address some of those issues because of COVID. We see countries looking at, you know, developing plans that are inclusive of persons with disabilities because of the impact of COVID. So, we are seeing change, but I think it's important to remember that we're working against hundreds and hundreds of years of a particular understanding of disability, a particular approach to disability. And so we have to be realistic in understanding how quick things will change. So yeah, things are changing, but they will take some time. 

Larissa Burke 16:58

I remember when we were early in the vaccine rollout, and there was these vaccine deployment plans that were being developed at a national level, and there were conversations around people with disabilities being prioritised. And often the response was around, there's not the evidence to suggest that they are at higher risk. And I think that I think, like evidence is so critically important. But it's difficult when the health system or the system at large is not necessarily collecting the information that's needed to provide the evidence in order to inform the decisions.

Darryl Barrett 17:32

Yeah, absolutely. We often see a disengagement on disability or a lack of engagement on disability under the banner of we don't have the evidence. And that just gets tired after a while, because, you know, we, it's a catch 22, we need to invest in actions to produce the evidence that we need. And so you know, it's almost chicken and egg. We know qualitatively of the impact of not doing anything has on the health of persons with disabilities. The other thing that I want to say is that this report makes it much harder to hide now, any health sector player and this is not just governments, this has anyone involved in the enhancement of health services at a at a population level. The evidence has shown us that not only are these the inequities that exist, and the fact that people have poorer health outcomes, because they are people with disability. But we have the evidence to show if you do if you take on these recommendations and take these approaches, then you're likely to make headway in terms of addressing those inequities. So it's much more challenging for health sector parties to just say, no, we don't know what to do.

Larissa Burke 18:49

So when you talk about the recommendations out of the report, can you give us a bit of a snapshot of what they look like?

Darryl Barrett 18:55

Yeah, so we were very conscious of framing the recommendations to fit the health sector. And when I say fit the health sector, we didn't want to create a report that had a series of recommendations that might be good recommendations, but are totally disconnected from what ministries of health are responsible for. We know from WHO's work in countries and with governments that there is a big investment to advance universal health coverage. And one of the ways we do that is with investments in the primary health care approach. So looking at integrated services close to where people are, looking at action across different sectors, and making sure there is real community engagement. So we framed the recommendations very much in line with the primary health care approach, because that's what governments around the world are investing in. And so you'll see in the report that there are what we've called strategic entry points, and these are these relate to the building blocks of the health system. So looking at things like health workforce or financing or leadership and governance, a range of different areas that governments can take action. And what we've done within those 10 strategic entry point is provided a menu of 40 different targeted actions that governments can take. And those targeted actions are a range of activities that depending on where the government's at, they can choose to prioritise those actions. And to frame it in another way, if a government is making health sector reform, say, for example, in the workforce, they might be updating the curriculum for nurses or for doctors, then what we want to do is make sure that there is disability consideration in that investment, in that reform, rather than having a wish list of other things that might be important in terms of disability, but we need to be integrated with health sector reforms. And the only way we do that is by being part of those, you know, areas that governments are already committed to. And so making sure, for example, that there's disability competency training in the curriculum of healthcare workers, that would make a huge impact in terms of the quality of care that persons with disabilities receive. So it's make sure that we marry the recommendations with the reforms that are underway.

Larissa Burke 21:16

And obviously, working at the system level is critical and key. A lot of our partners that will listen in to the podcast are working much more at a programmatic level. And I think you heard this morning, that question of how do we actually do disability inclusion at a programmatic level? So, for example, when they're doing things like lab strengthening or field epidemiology training, or genomic testing and sequencing, so you know, highly technical pieces of work where they're struggling to see entry points. I wonder whether you could distil down some key entry points at a programmatic level? 

Darryl Barrett 21:59

Sure. So maybe I'll start by reminding everyone how challenging it is to work on disability inclusion. And that's not a negative. It's just a reality, because disability is complex. And the convention says that, so I'm totally protected by saying how complex disability is. And so I think what we need to do is recognise the complexity, some things will be straightforward at a programmatic level, the one of the most straightforward areas to work on is physical infrastructure, making sure that refurbishments or design of health facilities and even into a service design, not of facilities, but our services are designed in a universal manner. That's a really straightforward way to go. Where it does get more challenging areas like research, or as you said, sort of genomic testing, or you know, some of the even looking at how we might integrate disability into a anti-microbial resistance AMR programme, where do you start with that? And so there's a couple of ways that you can easily start with working at those in those tricky areas. One is to make sure that the end user is not a cookie cutter type model, and that we consider some of the different barriers that people are the factors that people might experience. And a way to understand that better is by partnering with organisations of persons with disabilities. We keep saying that, quite often, but it is one of the cornerstones of understanding how to make impact, particularly in these tricky programme areas like AMR. Making sure that the programme, or whoever's leading on AMR, is actually consulting with end users that include persons with disabilities. And so having that engagement will help the programme designers and monitorers and implementers understand the particular issues but also understand whether there is success. In AMR, it can often be at from an individual perspective, it can be even understanding about the use of antibiotics, the use of making sure that things are taken the way they should be taken. Is that information in an accessible format? You know, are we making this information in easy read so that people with intellectual impairment can actually understand what it is to stay safe in terms of when to or when not to use antibiotics. And then looking at the workforce making sure that the health professionals that are prescribing antibiotics actually doing so in an inclusive manner for persons with disability. So, in terms of some of those tricky areas, it's starting with the end user in mind and that can either be dealt with by consultation or it can be done through you know, how we communicate some of the some of the services that we need to do so it is going to depend exactly on what, what programme we're looking at. But there's always a way forward. Always.

Larissa Burke 25:07

Thanks. So I'm interested in the report, it talks about the economic argument for disability inclusion. I think it would be interesting just to dive in a little bit deeper as to what that argument is. And I guess how we can kind of leverage that.

Darryl Barrett 25:24

Yeah, sure. So in the report we include some economic analysis, because we engaged both internally and economists external to WHO, to look at the return on investment, for taking a disability inclusive approach in certain health interventions. Now, this is not this is taking nothing away from an individual's right to health and right to the highest attainable standard of health that goes without saying it's my right to get the health services I need. But the reality is, there is a prevailing narrative in disability that it always just costs money to provide services, and it's expensive, or it's a luxury thing to do for high income countries, and we can't afford to do that. So this economic analysis, hopefully starts to turn that on its head and say, well hang on a minute. If we undertake these health interventions in a disability inclusive manner, it could return a significant amount back into our investment. And what we've seen, what we've done is we've looked at some existing studies on return on investment for things such as non-communicable disease prevention and treatment, cancer care and treatment, and also looking at family planning and immunisation. And in the report, we show that an investment of $1, for non-communicable disease interventions that are inclusive of persons with disabilities could return up to $10 in coming back for the government for that investment, and that's really essential that we start to look at those analysis because, again, we have the evidence to show that it's actually economically viable to invest in a disability inclusive approach, rather than being attached to the narrative that says, oh, it's just money just flows in a one way street. So it's absolutely essential these days, when we look at the impact of COVID on government budgets overall, but especially health budgets, and we look at, you know, the global impact of different factors that are driving up the prices and cost of living, it's important that the investments we make in the health sector are smart investments. And we show in the report that disability inclusive investments are smart investments.

Larissa Burke 27:56

I imagine that that will start to hopefully kind of shift the narrative a little bit on how we're approaching those conversations.  

Darryl Barrett 28:02

Yeah, there's more work that we need to do. But this is certainly hopefully the start of more of that economic discussion on the importance and the value of investing in disability inclusion. 

Larissa Burke 28:14

Darryl, you've outlined some recommendations out of the report, and really helpfully kind of dived into some of the practical programmatic things that some people, some of our partners could be thinking about. What's next for WHO, what are the next steps?

Darryl Barrett 28:33

So we've already started to develop a toolkit for countries to implement the recommendations of the report. So what we're focusing on now is the dissemination of the report, sharing the report for governments, for partners to understand what this means, you know, what, what the evidence is telling us what we should do. So that's one stream of work. The other stream of work is this toolkit that we're developing. And the toolkit is really a process to take governments through the development of a set of actions, a plan for disability inclusion in the health sector to address these inequities. And so this toolkit we're looking at, we're developing it and testing it in selected countries, to be able to understand a little bit more of what governments need to do to be able to implement the recommendations. And this will be a process that we're undertaking, at least for the next two years, potentially longer. So that at the end of it, we will have a published toolkit, which we'll be able to share with governments and health sector partners which will outline a very clear process from situation analysis right through to implementation, and guide countries through the steps needed to address some of those contributing factors to inequities that we highlight in the report. So that's, that's the ongoing work at the moment. 

Larissa Burke 29:56

It's an exciting time to be working in this space. 

Darryl Barrett 29:58

Yeah, it's great. It's good to have the report obviously, it's a standalone and gives us a lot to go on. But it's even better now that we are taking the report into more of a practical stage really and working with countries to implement it and what that actually means in reality.

Larissa Burke 30:16

Yeah, absolutely. And where can people go for more information? 

Darryl Barrett 30:20

So everything is on the WHO website, just log on to who.int and then if you just search for disability, you'll find our landing page and be able to go from there.

Larissa Burke 30:33

Yeah. Great. Thanks, Darryl. You've been listening to Darryl Barrett from the World Health Organization discussing health outcomes for people with disability, and in particular the findings of the WHO Global Report on Health Equity for Persons with Disabilities, released in December 2022. We'll put the hyperlink in our show notes. This has been the first episode of our two-part series on disability and health equity. In the next episode, I'll be speaking with Villany Remegesau, the co-chair for the Pacific Disability Forum, who provide perspectives from an organisation of persons with disabilities and discuss some of the experiences that people with disabilities face when accessing health care services, and their experience of health. I'm Larissa Burke, gender equality, disability, and social inclusion advisor at the Indo Pacific Centre for Health Security. Contain This aims to bring you fresh insights, analysis, and updates on what is shaping our region in health. We look forward to having your company on the next episode. 

Contain This is produced by the Indo Pacific Centre for Health Security. We acknowledge the Traditional Owners and Custodians of Country throughout Australia and the Indo Pacific region. We recognise their continuing connection to land, waters, and community and pay our respects to Elders past and present. You can follow us on Twitter @CenterHealthSec.