Progressing health equity for persons with disabilities – Villaney Remengesau, Pacific Disability Forum (Part 2)

In this second episode of our two-part series on disability and healthy equity, our guest this week is Villaney Remengesau, based in Palau, who is the co-chair of the Pacific Disability Forum.

Lany is a dedicated advocate for disability rights and inclusion across the Pacific. She was recently awarded the Disability Pasifika Award – the highest award for a person with a disability who has made a valuable contribution to the work in the region. 

To complement Part One of this series with Darryl Barrett from WHO, in this episode, Lany brings her lived experience of disability to the discussion around health equity for persons with disabilities, having worked in the health sector in Palau for 10 years. 

In this episode we discuss:

• The barriers faced by people with disabilities in accessing health care.
• The importance of ensuring people with disabilities are engaged in health programs.
• Her key recommendations for how development partners working in health can ensure they integrate disability inclusion into their programmes. 

If you missed Part One with Darryl Barrett from the World Health Organization, you can listen to it here: https://containthis.buzzsprout.com/620797/12687278-progressing-health-equity-for-persons-with-disabilities-darryl-barrett-who-part-1

You can also 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. You can follow the Pacific Disability Forum at @PDFSEC.

Transcript

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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 00:22

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 the continuing connection to land, waters, and community and pay our respects to Elders past, present and emerging. We take this opportunity to pay our respects to the late Joshco Wakaniyasi of Fiji. A champion of inclusion, equity, and rights for people with disabilities, Joshco leaves behind a great legacy. We acknowledge the contribution he has made towards disability equity and inclusion in the Pacific region. 

This is the second episode of a two-part series on disability and healthy equity. In Part One, we were joined by Darryl Barrett from the World Health Organization, who talked at length about the WHO Global report on Health Equity for Persons with Disabilities. Today we speak with Villaney Remengesau, from Palau, who is the co-chair of the Pacific Disability Forum. Lany is a dedicated advocate for disability rights and inclusion across the Pacific. She was recently awarded the Pacifica Disability Award – the highest award for a person with a disability who has made a valuable contribution to the work in our region. Lany brings her lived experience to our discussion around health equity for persons with disabilities and speaks from the perspective of an organisation of persons with disabilities – an OPD. Lany also brings a depth of experience in relation to health, having worked in the health sector in Palau for ten years. We discuss the barriers faced by people with disabilities in accessing health care, the importance of ensuring people with disabilities are engaged in health programs, from the beginning, and her key recommendations for how development partners working in health can ensure they integrate disability inclusion into their programmes. We hope you enjoy the conversation.

Lany, I just want to start by asking some questions to better understand the experiences of persons with disabilities in relation to their experience of health and their access to health care and health services. Can you give us a bit of a sense as to the main barriers faced by people with disabilities in accessing health care?

Villaney Remengesau 02:32

Let me give you a general perspective on the challenges faced by persons with disabilities in accessing healthcare services. I guess, as we all say, health is a right so we have must have equal healthcare services as equal to persons without disabilities. And when you say health rights, you can say you can say there are public health services, there are clinical services, there are other services within the health sector. And several challenges I've encountered in health and where is that accessible transportation services that will take you as a person with disability to the hospital or to other healthcare centres. And even when you get there to the hospital, you are being treated to as equal as person without disabilities. So it depends on the way healthcare workers treat you, whether he or she was bad, whether he was attentive to your to your needs, in terms of the customer services, care services for persons with disabilities. And this may not be my challenge, but it's also challenged for other persons with disabilities that I know particularly for those who are Deaf and blind. And for person with psychosocial or intellectual disabilities who are still in the category of marginalised groups of persons with disabilities, when they get to the hospital, how, how friendly and accessible is the services for them. And I think also other challenges that I've faced in terms of accessing healthcare services is the availability of affordable health care services. Yes, somewhere in Palau, some of the public health care services are discounted or foreseeable price, but others other services like in clinical services, if you get admitted in the hospital, how costly it is, are you being covered? If I'm working, I'm lucky I'd be covered by the national health insurance coverage in Palau or if I buy my prescription, I will also be covered by my medical savings account. But for those who are not being covered, where would that leave them? Do they do that? Leave them hanging? Will it be the government responsibility to take care of that offsets costs? Or they would have to take care and out of their own pocket? So these are some of the financial costs that we are facing at the country to either challenges that I can say is, is I guess this is the inability of the healthcare services. Because whether we like it or not, we're in a country that the administration, the government administration changes, time to time when there's a new election, the new administration come in. So in terms of affordable health care services, accessible healthcare services, inclusive health care services, that we all will always seeing of this healthcare as accessible, inclusive healthcare services. But how are they sustainable to everyone and also for persons with disabilities?

Larissa Burke 06:03

That's an incredibly comprehensive picture. Lany, you referenced the importance of affordable health care services. Can you talk about the role that social protection plays in supporting people with disabilities to be able to afford and access the health care that they need? 

Villaney Remengesau 06:20

Healthcare services is a right for everyone, including persons with disabilities, but social protection is more additional benefits that will ensure such person with disability will will have will, will have healthcare services for. Let me give you a in this perspective. So we have we have a person with disability going to the hospital, he or she will have a right to health care services, right. But in terms of social protection scheme for for, let's say disability allowance, or not only, let's say national health care insurance, can there be a coverage of national health care insurance or even other forms of health care insurance to cover the transportation costs for person with disability to be able to transport him or her to the hospital to get his or her healthcare services to able to see a doctor or nurse or whatever, that that is a social protection for like Palau we have a national healthcare insurance, and we have a medical savings account right MSA so so national healthcare insurance is for those who are going for off Island care or or even just for admitted in hospital but for MSA is for those who are just going for outpatient care services. In and also in the country, we do have disability allowance, we have a social security disability benefits, and even pension disability benefits. So we were saying, how do we combine all this into one package, so that we have consistency and sustainability of services for person, for person or for not just for person with disability, but for everyone. So for instance, if we have an in national NHI, that can cover, that there should be coverage for a transportation, or even just to cover other reasonable accommodation needs of person with disability so that he or she can get that affordable and accessible healthcare services so that they can own their own in be in one package bundle. So that in terms of the consistency, the sustainability of the programme, of healthcare services and social protection services.

Larissa Burke 08:46

Lany, I'm just interested to better understand the experience of people with disabilities during COVID-19, both in relation to accessing information and understanding or being able to protect themselves, but also in relation to access to, for example, vaccination and protective PPE, personal protective equipment, such as masks, and important things like sanitizers and things like that. 

Villaney Remengesau 09:23

That was quite a challenge still, well, for COVID-19 experiences with persons with disabilities, I do remember when we went around the country to disperse all these hygiene products that were donations from our partners. So when we do when we disperse these hygiene products, we try to simplify the message that we're given to them and even just to bring it to them, you know, trying to talk to them to comfort them to make them understand of what what or what's the situation at the moment what to expect, you know, making them understand because in the country, I do remember ministry of health and I this was also my battle here during the COVID when trying to talk to them that you know, all these infographic materials, all these materials producing for COVID. You have to make sure that when they keep saying they're accessible, yes, they're accessible, but how are they being translated in the local context. So even just translated in local language, but for person with psychosocial intellectual disabilities or even for blind, how would they understand especially the person who's psychosocial or intellectual disabilities, how would they understand such technical terms in the materials produced published by Ministry of Health workers, and even coming to the state level, I also know that one of the state, the biggest city state in the country, translated them in to simple in into local language and even to say English, simple English. But yet again, a simple English is not just a simple English written in such document. But also, when even when you disperse such materials, you have to ensure that you have to make the people that you encountered to understand and what's written in those materials. And even just putting developing a material that has all the information, overcrowding in a document, nobody would even not even an older person would even know what's written over there. And even for a person who has a low vision. Yeah, so so all those are the challenges that I had encounted during COVID, and even social media announcements. And by radios as well, and from outreach visits, from state to state, from villages to villages, these were just some of the, I guess, main challenges that we've encountered. But we, we had some discussions and we came along together and we work together even just putting our caption in the TV, like when there's an update from the Ministry of Health, in there should be a caption and the TV. And then like in Fiji, there should be sign language interpreter. So you know, those are just some of some of the challenges that we did have during the COVID. And we prepare for it. And we try as much as we can to do have conversation at the table to help one another. 

Larissa Burke 12:49

And it sounds like in maybe in Palau, and and I've heard this in many other countries in the region as well, that the relationship between the government and the organisation of persons with disabilities was really critical in being able to reach people with disabilities with information, and in some situations with vaccines as well. So you talked a little bit about working alongside the government, but how important was the role of organisations of persons with disabilities in the response to COVID? 

Villaney Remengesau 13:32

At the beginning, we were not part of the more of like a body, with the government. But during, that's when we start to collaborate more together with the Red Cross and Ministry of Health to really making sure that the social media, the publicity of COVID, materials, announcements, making sure that persons with disabilities get vaccinated, that's when we started to enhance our relationship. But we were not part of the discussion at the beginning. So this is like what we're saying. If you want to do something for a person with disability always start at the beginning that don't call them to come in at the, the middle or even towards the end of the stage. 

Larissa Burke 14:25

Is there stronger understanding now in in Palau and or other countries about the importance of involving people with disabilities from the beginning?

Villaney Remegesau 14:38

Right now there's a strong understanding because I think because of active We might call it our active involvement and partnership meeting with with the government, not to mention coming from the higher up with the Office of President and even President himself. So we have that close partnership now. So it's slowly but surely we're working more better together with the government focal point on disability and the Office of President and too, other agencies in the government. 

Larissa Burke 15:13

Yeah, that's great. And I think there's other examples, too, in the region, where the OPDs weren't involved at the beginning, but then actually, the relationship between the Ministry of Health and other government representatives and OPDs is much stronger than maybe it was before. I guess it's the hope is that sustains and if there's another crisis like COVID, that that would be that we, I guess, that we embed those learnings and make sure we do engage people with disabilities early. So, Lany, based on based on our discussions, on the experiences of persons with disabilities, and the barriers that they face in accessing health care, what do you think needs to be done to improve the health for persons with disabilities?

Villaney Remengesau 16:06

Well, for for my for my country, I know that I think I guess it's not just for my country, but for for other Pacific countries, is understanding the word disability, how do they define and explain disability at the country? Because if if healthcare workers, the current government understand what is disability who are persons with disabilities, the concepts of disability, then they will be able to this I'm sure it will greatly impact the delivery of healthcare services, because even even on honestly speaking, I know, I can identify the such health care workers in my country who are who are not being able to deliver such health care services to persons with disabilities, maybe because they don't know this person with disabilities or how to deliver such services for them. So first things first is to understand the disability the concepts of disabilities and the different preconditions to inclusion, which is the accessibility I know accessibility is used in all different across the region in all different forms. But when it comes to healthcare services, how do they understand accessibility? What are the contexts of accessibility? How do what how do they align it to in terms of accessible healthcare services that so that it will be delivered for all including persons with disabilities.

Larissa Burke 17:44

Thanks, Lany. I think that's critically important that understanding the concept of disability, and our definition of disability, which somewhat circles back to also our training of health workers and how it is that we're better equipping healthcare workers with the knowledge and skills to provide inclusive services. So it's a nice little circle back to our earlier conversation as well, I think. So, we've talked, we've talked a little bit about COVID. And the importance of working with OPDs. I'm interested to know what you think some of the lessons learn from COVID are and how we can do better if you know the next epidemic or pandemic hits? How is it that we can be more inclusive and ensure persons with disabilities have equal access to the information and the services that they need to keep themselves safe on an equal basis with all others?

Villaney Remengesau 18:56

Some of the lessons learned is I think we always as persons and coming as a person with disability and coming from the disability community, we always say if anything that involves disability, have to consult a person with disability, so don't bring a person with disability into the middle stage, or the end stage of the project or the proposal, or even the conversation and such effort. So that was that's the one lesson learnt. And another thing is, of course, improving the coordination and communication between partners, stakeholders, and when it comes into this conversation on COVID or other emerging issues coming up, right. 

Larissa Burke 19:40

This wasn't a question on my list, but I'm going to ask about the Global Report. The Global Report on health equity for persons with disabilities, was released in December 2022. And we've spent some time talking with Darryl when he was here in Canberra about the report. But I'm interested in your perspective of how important that report is to the disability community.

Villaney Remengesau 20:23

The report is important for us persons with disability. For you know, as I said, for health, for health for education, you don't just ensure that the health care services, education services are being provided to person with disability but ensuring that its accessible and inclusive for them. So it's not just ticking the box for persons with disabilities have a right to a health have a right to education, it's just like ticking in the box, you have to ensure that such services are equal and are accessible, inclusive for them. I do remember in one of our meetings, discussions for equity, of course, persons with disabilities are not just they don't just benefit from the services, but they can also what do they call, they can also contribute to the society. And that's equity. So yes, everyone can have access to services. But everyone can also contribute to the society so persons with disabilities can become a political leaders in the country, can become a leaders in civil society organisation, can they can become a leader in their family. So it's that's what we say equity is it's equity of services. It's equity of being in the community to contribute and be part of the community equally as people without disabilities.

Larissa Burke 22:06

I think that's such a critical reminder to that and I know, as a previous health worker, you can get caught in the delivery of health for the benefit of others. But good, I think such a critical reminder that people with disabilities, just as much as anyone else have, should have, the opportunity to contribute to the delivery of health policy and health programming. Not just about receiving services. And I think the Global Report is like it's quite action orientated as well. So I think has the potential to provide a really great roadmap for governments in terms of what they can do around improving, improving inclusion and health equity. So I think it's an exciting report, an exciting time for it to be released as well off the back of COVID. Lany, here in the Indo Pacific Centre for Health Security, we have health programmes in the region that we, our partners implement, and that we support. And I just wondered whether you have any key recommendations of how partners development partners working on health can make sure that they are integrating and paying good attention to disability inclusion in their programmes?

Villaney Remengesau 23:40

Well, some of the key recommendations that I can propose this, again, is to understand is to understand the disability and its concepts, and that the the different preconditions to inclusion. And second one is to communication. Communication is important, communication and coordination, that we that said, ensuring that persons with disabilities are at the table are at discussion. And my third one is I guess we have to in the disability will always want to ensure that efforts and services are being sustained. So we don't just do this one for for the sake of it just because it's a mandated. But we also need to ensure it's not just been done there just for that certain period of time, but also there it should be continuing effort or services for the community and for everyone, including persons with disabilities. 

Larissa Burke 24:52

I think you've done really well to relate it back to I guess, donor funded programmes, particularly that kind of point around sustainability and how it is that we are ensuring not only that we're ensuring OPDs are at the table, but that we're thinking about the sustainability kind of lens as well. Lany is there anything else you want to add?

Villaney Remengesau 25:13

I think just to say that I am of course our life has ups and downs, but I really experience the learnings that have come through is what made me who I am right now and trying to be that great advocate for persons with disabilities. Yes, I've gained from Ministry of Health, I've gained from PDF, I’ve gained from my movement, and from the experience I have with you and all these other organisations I’m affiliated to so now I'm returning back to the community to help the people the country that will get the same benefits services that I have along the way. Thank you, Larissa for this opportunity.

Larissa Burke 25:59

Thanks, Lany. And that's such a great way to end the conversation as well. So thanks so much for your time.  

You've been listening to a conversation with Villaney Remengesau, co-chair of the Pacific Disability Forum. Lany discussed the experiences of people with disability – including her own experiences - in terms of inclusion and health outcomes. We talked about why it’s important to understand disability and the concepts associated with disability inclusion, how communication and coordination plays a vital role in supporting inclusion, the importance of sustainability and the critical need to ensure that people with disabilities are at the table in all discussions around disability. This has been the second episode of our two-part series on disability and health equity. I’m Larissa Burke, gender equality, disability, and social inclusion advisor at the Indo Pacific Centre for Health Security.