Welcome to the sibling Leadership Network podcast. The sibling Leadership Network is a national nonprofit whose mission is to provide siblings of individuals with disabilities the information support and tools to advocate with their brothers and sisters and to promote the issue is important to us and our entire families. Hello, and thank you for joining us for another episode of the SLN Podcast. Today I am joined by Ariella Meltzer to talk about international sibling support. Ariella, Thank you for joining us today.

Ariella Meltzer: 0:35

Thanks so much. It's great to be here.

Chris Berstler: 0:37

So I'd like to kick things off by asking you to please tell us about yourself and your experience working with and researching sibs from different countries.

Ariella Meltzer: 0:46

First and foremost, I am a sibling myself. So I have a twin sister with a physical and intellectual disability. And I've been a really long time member of siblings support communities. So since I was a really, really young teenager back in the day when SickKids existed and was run by the sibling Support Project, that's now turned into into sub teen. More recently, though, I'm also a social policy researcher working for the Center for Social Impact at the University of New South Wales, in Sydney, Australia. So in my role there, I do a bunch of research about a range of topics. My core interests are disability and young people sometimes combined, and sometimes separately. But I also do research about a range of other related topics such as Families, Housing, and the design and implementation of Human Services. But one of the topics that I've always been interested in researching, I guess, based on my own experience is relationships between siblings where one has a disability. My research in that area started with a study of the sibling relationship during young adulthood. And notably, in that research, I focused on the perspective of both the sibling with and without disabilities. So I spoke to people with disabilities, about their relationships with their brothers and sisters, as well as the siblings themselves. More recently, though, I've been working on some research about how sibling support is provided around the world. So I started with a small pilot study of just five countries. So those countries were the USA, the UK, Canada, and New Zealand and Australia. And I'm now expanding it out globally, to look at more countries as well. So my current piece of follow on research, include some of those original five countries, but also include some other places as well, such as Japan, Peru, Nigeria, Portugal, Italy, Ireland, the Netherlands, and, and Taiwan. So it's been really interesting to see how siblings what is provided around the world. And I'm kind of working on two sets of findings from that research. One is a typology of different types of sibling support. And one is also looking at the conditions for the organizations who run sibling support, because there's a whole lot of sibling support organizations around the world. And, you know, aside from actually providing support to siblings, they need to think about how they run themselves. So what their business model is, how they get funding, who their staff and volunteers are, what their leadership and governance is like. So I've been looking into that. And as far as I'm aware, it's it's the first piece of research of that type. So it's been, it's been really, really interesting to see how sibling support has been provided around the world and how many similarities there are between countries, but also how many differences

Chris Berstler: 3:59

in your experience, what similarities Have you seen in sibling support from country to country?

Ariella Meltzer: 4:05

So I think that's a really, really strong similarities across sibling support organizations from from country to country. The first similarity is that there's kind of two different types of organizations who provide sibling support in a whole lot of countries across the world. One type is dedicated sibling support organizations which are there to service siblings only. That's their primary focus. And if they provide services for others, such as parents or professionals, then the services that they provide for those other people are always still in the service of siblings, so it's educating parents or professionals about sibling issues. The second type of sibling support organization are organizations who have a broader remit but income Doing siblings. So that might be, you know, a big disability service provider, or a big family service provider or a carer organization, or a caregiver organization who service other people as well, maybe people with disabilities or parents or caregivers more generally. But siblings are one group within the broader set of cohorts that they that they service and across different countries, you can see that these two different types of sibling support organizations recur time and time again, one of the other really big similarities, I think, between the sibling support organizations across countries, and this is particularly the case for those organizations that primarily serve as siblings. but not exclusively the case for them is that they're all not for profits, they're all charities. And they're mostly operating with really minimal funding and staffing. So they've got really small grants small amounts of money to do their work with. And they often have only a really small amount of paid staff. But those staff are often siblings of people with disabilities themselves. And they're super passionate. And so the organization's are running on minimal resources, but huge amounts of, of passion and personal experience. So what that means is that often that organizations are conducting really great work, but doing it with minimal resources, and often struggling in the background to gain recognition or gain ongoing funding, which is this really interesting dynamic assign that they want to keep going. And they they always seem to, but it's going from Grant to grant or donation to donation. And kind of having stability is always the challenge.

Chris Berstler: 6:59

So what differences have you noticed from country to country for sibling support?

Ariella Meltzer: 7:04

Um, so one of the big differences is that there's only a couple of countries that have multiple organizations that focus on siblings only. So the USA, for example, has multiple different organizations that focus primarily on siblings, and Japan does as well. But many or IDSA, most other countries only have one organization focus primarily on siblings. And so the implication of that, in terms of that cross country comparison, is that where there are multiple sibling focused organizations in a particular country, I think they can differentiate and specialize a lot more. Whereas when there's only one sibling, focused organization, and a country that's primarily servicing siblings, that organization has to do a lot more, they have to do a bit of everything. And there's not the opportunity to specialize and focus on one product or specialize and focus on one group. I guess the other big difference is, you know, across all of the different countries, they sibling support organizations are operating within the service systems of the particular country they're in. And all of those service systems are a slightly different with different conditions that make it easier or harder for them to provide services and get the resources and support they need to do so. So an example of this is that in Australia, in the UK, there's currently a really big focus in the disability sector on what's called direct budgets and personalization in services for people with disabilities. So this means that money goes directly to a specific person with disability, and is not provided to a service provider organization in a more wide scale way to just do with what they want. And so when the money is provided directly to a person with disability, it makes it really hard to then shave off a bit to run sibling support. On the side, for example, for one of those bigger organizations who serve as much multiple cohorts and makes it harder to do sibling support. And it also makes it harder for the dedicated sibling support organizations to get money or or get space to do their work. Similarly, some countries around the world have more of a focus on carers or caregivers than others in terms of just their social policy. And for the countries that have a really big focus on carers or caregivers, often, government and other funders will subsume siblings under that broader caregiver label. And think that siblings have been catered for and policy, when perhaps people like you and I who know more about, I guess the specificity of the sibling experience. Know that, you know, we can benefit from some caregiver supports and services. But we need some specific stuff that sibling specific as well. And so in countries where that is that care focused, it's a particular dynamic of navigating, you know, where do we collaborate and join with caregiver organizations? And where do we need to do something specific? And then in the places where we need to do something specific? How do we? How do we get the resources we need when a lot of it is going to broader social policy settings around carers?

Chris Berstler: 10:47

Ariella Meltzer: 11:00

Sure, so that community practice is a really exciting initiative, which is one of the first really sustained or long term attempts to create a conversation between siblings support providers in different countries. So for listeners of the podcast who might not have come across the idea of a community of practice before, a community of practice is a group that shares common concerns and interests, and they come together to share with each other and learn from each other and support each other. In the case of the international community of practice for supporting siblings, people with disabilities, a very long name. The idea for this came from discussions between a few members have different sibling support organizations who had been on some conference panels together talking about international sibling support. And we kind of worked out through the conversation on the on those panels that it was really time for something to be created. Some representatives from Sibling organizations in the US, UK, Canada, India, and Australia, got together and decided to create the community practice. And it's for organizations, groups on networks whose primary mission is to support siblings for people with disabilities. So it's that first type of sibling support organization I was talking about earlier. And the intent is really to create a space for people working in sibling support to share and learn from each other. We've had one meeting so far. So it's early days. And in that first meeting, we're really just introducing ourselves and the different organizations that that were present. And hearing about some of the background to be successes and challenges that they've had over the years, is a really democratic group. So we plan to share leadership of the group and rotate who facilitates the meetings and come up with the agenda. So there's no one leading the group per se, everyone who's involved is is a leader of it, which is a really nice feature. Obviously, working internationally comes with some challenges, though, so it's really hard to find a timezone that works for everyone. There's also some other challenges. So particularly from an inclusivity perspective. So at the moment, the meetings are in English, we, as we progress, and we become more established, we really want to think about how to expand that to other languages, or how to work in other languages as well, because that will open up doors for others.

Chris Berstler: 13:46

So far, what countries are involved in the community of practice?

Ariella Meltzer: 13:49

So far? The first meeting that we have are countries who were represented where Australia, India, the USA, Korea, Nigeria, Indonesia, Canada, there was a representative from Peru there whose organization services, other Spanish speaking countries as well. We also have links in with UK sibling groups as well.

Chris Berstler: 14:16

Do you see the group expanding a lot more in the future?

Ariella Meltzer: 14:20

We're open to whoever wants to come. From my own research. I think that there are few countries, for example, that were included in my international sibling study, who aren't yet at the Community of Practice and vice versa. So I think that there's opportunities to expand definitely. However, I think that you know, there aren't yet sibling organizations in every country around the world. And so, at this stage, we wouldn't be expanding infinitely to, you know, a lot more countries, but we're open to it. You know, as Many countries that have siblings support and want to be involved can and I guess one of the intents of the group as well as to help foster new sibling support organizations, in countries where there might not be one already. And so hopefully, by the very existence of the group, we might actually expand, which countries are members as well,

Chris Berstler: 15:21

what are members of the community of practice hoping to learn from each other?

Ariella Meltzer: 15:26

I mean, really, we just want to learn about what each other are doing. We want to see the scope of what's being done internationally, and learn about what's been successful in one place. And think about whether that might be also successful in another place, if the idea was was done somewhere else as well. I think there's also opportunity to benefit from the lessons learnt already by others. You know, as I said earlier, a lot of sibling support organizations operate in really hard conditions. And so, if one organization has learnt a way to solve a problem, or learnt the hard way, how to deal with a particularly difficult resourcing problem, or implemented new program that works really well, in particular circumstances, it's great for others to learn about that and not have to learn the hard way as well. I think also, as I said, we want to support small or new or emergent groups, and some of the bigger or sibling organizations who have more resources, maybe have opportunity to help some of the, you know, one person show type organizations who are struggling a bit more, and could benefit from some some shared resources.

Chris Berstler: 16:43

If any listeners out there know of a group that's primary focus is to support siblings of people with disabilities, and you think they would be interested in learning more about this community of practice, please feel free to reach out and contact us at info@siblingleadership.org. How has COVID-19 impacted sibling support around the world? Were there any countries that had sibling organizations that were hit especially hard?

Ariella Meltzer: 17:10

So when I take the first part of my international sibling research, so that was the section with the USA, UK, Canada, New Zealand and Australia, I collected the data for that research in 2020 and early 2021. So COVID was, you know, a really new experience than it was at its height, it was really hard for a lot of people and a lot of organizations. And so, inevitably COVID was something that came up in my discussions with sibling support providers. Interestingly, though, while the circumstances of COVID were absolutely awful, it created a few opportunities for sibling support organizations that were actually useful. So one of the really interesting things that several organizations told me and I did that first round of the research in 2020 2021, was that. And the pandemic actually created more awareness of the role of siblings in the lives of people with disabilities. So as everyone stayed home in lockdown, and people were confined to their homes confined to whoever they were living with, and governments and other broader organizations in the disability and family support sectors have had to think about how to provide services remotely, suddenly, that dynamic really shone a spotlight on siblings, you know, people were like, Whoa, who's at home with the person with disability are their parents, their siblings, their immediate family, ah, siblings might be a similar age to people with disability. It's like peers, it's like friends, you know, maybe we should be looking at what siblings and children and teenagers with disabilities can do together, you know, maybe we should be supporting the siblings. It was like, you know, this light bulb went off for different funders and bigger organizations. And so for a few organizations, it was actually quite helpful in helping to show others why siblings are important, what role they play in the lives of people with disabilities, and was also helpful in finding fundings and resources for a sibling focus during that really heightened pandemic time because there were, you know, new streams of funding available to address community isolation and social cohesion and family support. And several organizations were able to get short term programs in to support siblings in a way that they just never would have been outside the pandemic conditions. And then it's interesting for people like us who follow the sibling interest really closely, they're like, well Of course, siblings are at home, with the person with disability, they always have been. But the pandemic circumstance created the conditions for other people to see it, the ones who don't normally see it. And that was really quite a big change. The other thing that happened in that 2020 2021 period of pandemic was that everything went online. And it created a lot more online opportunities for sibling support. So people who are really involved in the splink, communities will know that there's always been online sibling support. You know, for example, subnets in 2017, they've always been online, and they've always been some of the cornerstones of the sibling support community. But the COVID pandemic also saw others specific, smaller peer support, and individual wellbeing programs run online for the first time, or ran more intensively than they ever had been, by a whole range of different organizations. And in models that were quite different to the SIP net, for example, experience. So, you know, small groups of people coming together online for a chat, or more education sessions being run online and more well being programs being run online. And that I that I think was quite beneficial. And if you look now, it's it's stayed. One of the challenges of sibling support, I think, has always been getting enough people together in a specific location to run a program. And so the opportunity to do it online, and you know, lots of people in high income countries in particular, becoming really second nature with Zoom or, or other video platforms created that opportunity. I think, unsurprisingly, this was especially the case in countries that had really long and protracted lockdown periods. And those were the countries in particular that soar, government funding becoming available for doing online programming as well. Obviously, not everything was a benefit about the pandemic, though, you know, I think it was really hard for both siblings and sibling support communities to contend with COVID being a really big danger to the people with disabilities that we love and to our families and, you know, extended lockdown and shielding arrangements to make sure that we could keep people safe. I think it also meant that the sibling community really had to grapple a lot more with grief and loss, then, you know, those have always been an issue, but it was suddenly pushed onto the agenda and in such a dramatic kind of way. And in a really renting type of way when, you know, people in the online communities soar outcomes of the pandemic for other people that they were really fearful of for themselves and their own families as well. In terms of your original question, also, you asked about organizations who were hit the hardest. And I think the organizations who were hit the hardest were those who were just trying to get off the ground at the time when COVID hit. So in my current piece of research, where I've, I've expanded that sibling support study out to more countries around the globe, there's a number of countries in that study who were really just starting their sibling support organizations at the time when COVID hit and really struggled to sustain the momentum both as countries locked down as resources constricted, as economic conditions cost of living have become harder in this kind of era of the pandemic were in now. And as the support of parent organizations or broader disability support providers who might have been fostering a small sibling support organization, have dried up as those organizations have had to focus on their core business a little bit more, some of the organizations who were just starting around the time the pandemic hit, managed to pivot, the great buzzword of the pandemic, at least in Australia, I don't know if that's the case, elsewhere as well, but they managed to pivot and really benefit from the the online experience that it created. But the really small ones who were like a one or two persons show, I think they really struggled and particularly those in countries who had really severe pandemic conditions as well. And those organizations now just thinking in various ways about what how can we try and reestablish where we left off. Can we get back to where we were or is it all too hard? And I think, particularly the really micro small organizations are asking themselves these questions at the moment?

Chris Berstler: 25:01

How are sibling support organizations tackling issues of discrimination?

Ariella Meltzer: 25:06

It's a really interesting question. And I think it's something that's really pushing onto the agenda of sibling support organizations at the moment. Like it's a really current big issue for a lot of organizations across the world in a whole lot of countries. But I would say, particularly in the USA, and the UK, where local conditions and events have led to many people and many organizations really wanting and trying hard to do better on these types of issues. I think the most common focus in sibling support organizations is to try and do better on cultural diversity. So particularly covering better covering the support needs of siblings of color, or ethnic minority siblings. The terminology varies depending on what country you're in. But there's also sibling support organizations trying to do things to address gender diversity, and class or socio economic diversity as well. Different sibling support organizations are trialing a whole bunch of different things on this front, some as individual organizations and some has collaborations across organizations as well. So there's a lot of organizations who are really foregrounding this as an issue and being really intentional about encouraging greater diversity. Some examples of how they're doing that is purposefully seeking diverse participants for their initiatives, offering sponsorship to cover attendance fees and events, providing multilingual resources, educating their leadership on diversity issues, and then having that flow down into that programming, trying to find outreach workers at outreach events so that they reach siblings who they might not easily reach or who might not come to them. And also specifically conducting events to address greater representation, sometimes in collaboration with each other. The reality is, there's still a lot more work to do on all of these issues. And as I say, it's a live issue that a lot of people are trying really hard on at the moment, also with the international community of practice. I think it's also notable that the sibling support committee as a whole is now trying to create a lot more connections with sibling support organizations in non English speaking countries. And I think that helps as well. And the Community of Practice will be a critical piece in trying to maintain that conversation across languages, although as I said, we do need to grapple with the language barrier ourselves. Um, I guess the final thing that I'd say on this topic is that one of the long term challenges specific support is whether or how or to what extent people with disability are included in sibling support initiatives as well. And I think this is an area where we're really starting to see a few changes as well. There are a couple of sibling support organizations recently who have been running events for siblings, both with and without disabilities together, either discussion events, or kind of recreational socializing events. And that's something new that's pushing on the agenda. That's nice to see. I think there's one or two sibling support organizations who are also really trying to foreground the idea that it's not either or many people who identify as siblings of people with disabilities may also have various disabilities themselves, which, over the course of their lifetimes, may have received more or less attention, depending on their family circumstances and how LinkedIn to services and how enlightened everybody was about multiple health and disability experiences in the family. But I think the idea that, that it's not a binary between who has a disability and who doesn't, is also starting to be a subject of of conversation, which is quite important as well.

Chris Berstler: 29:15

Ariella Meltzer: 29:29

That's the million dollar question isn't that it's such a hard one. And especially the bit about how to ensure that it happens. That's the really, really hard bit because so much about the circumstances of sibling support depends on external agencies like governments and philanthropists and other funders. And so it's hard to know what's needed. And it's even harder to do what's needed. Having said that, I had to chip off This question was coming in. So I did have a think about it. And I've got four things that I think sibling support around the world needs. The first one is sibling support really needs consistent recognition everywhere off the importance of sibling support as a distinct service type that needs to be funded separately to support for other people, such as people with disabilities, or parents, or more general carer support. So often, sibling support has the misfortune of governments, funders, big service providers, wanting to subsume it under support for other people as well. And that's really tricky. There are some aspects of that support that we really benefit from. And absolutely, there are times where we want to collaborate and be included in other group support initiatives. And we can't do it alone. Because you know that if you support one person in the family without supporting all the others, that's useless, but consistent recognition that sibling support needs to also be available. There's something distinct, and consistent recognition of that everywhere across the globe. That's one thing that's really, really needed. Another thing is consistent and ongoing funding. And that's hard all over the world. And it's hard for a whole range of different reasons that relate to the surface systems of different countries. But it is a common theme everywhere. fundings just needed to fund the initiatives that sibling support wants to do. And to pay the people who run sibling support, you know, there's always going to be volunteers who want to get involved. And that's really important, and it's really good. And it's really appropriate because people want to support their own communities. But it's also important that sibling support in the majority isn't being done out of pocket or isn't being done only out of goodwill, it needs to be supported, recognized sector, I guess related to those first two things is the third thing is that I think there needs to be a pipeline of new and ongoing leaders or staff or volunteers to share the workload within sibling support, and a way to support them and train them. And in some cases, pay them if they're not volunteers, they'll always be the volunteering component, but but some people will always need to be paid. And the reality is that sibling support can't be run by a tiny group forever, it needs to have lots of people involved so that that's sustainable. I think the SLN is really lucky that it has so many people involved. But currently in many countries, there's lots of sibling support organizations who are one or two person show, or who have struggled to maintain ongoing funding to be more than that, even if they have been at certain points in time. And so finding a way to have that sustainability is really important. Because otherwise, you know, we're going to keep getting into the situation where new sibling support initiatives are established. And then they they can't continue because there's not the people or resources there to back them. And then the fourth thing, there needs to be ways to share information and skills with newly established sibling support organizations, or ones who want to grow and expand. And this is the one that we can do something about, because this is what the community of practice is trying to do. And if we can do that, well, I think it'll probably help the previous one about the pipeline of new people as well. You know, the more opportunities there are to share information, support each other, help each other, not have to reinvent the wheel every time just because you happen to be in a different country to where the thing you need was established, the better we all can be. So I think that's really exciting that more international discussion is happening around sibling support, I think is really timely. And it's probably in ours we were talking about in the in the code and sibling discussion, it's probably one of the great benefits of the pandemic. Because suddenly, everybody's comfortable with video technology, we can have an international community in a way that I think was never as possible. When the culture was more that things had to be done in person. I think I think it's an exciting time for sibling support, particularly international sibling support. And then there'll be, it'll be good to see what comes as a community practice. I think it has real, real potential, and it's exciting.

Chris Berstler: 34:38

Thank you so much for sharing all this information with us. Any resources that Ariella has shared with us can be found in the podcast description below. Thank you so much for joining us for another episode. And Ariella, thank you so much for sharing all of your information with us.

Ariella Meltzer: 34:56

You're welcome. Thanks for having me today.

Chris Berstler: 34:58

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