Transcript for
Co-design lessons from the Lived Experience Network – part two

Dana Shen (00:00): Some really, really important things of how something like this can work well and be well-embedded, is that we are asking the people in the system that are working, the professionals in the system to actually bring certain things to this work. I think there’s a couple of things. The first is that that we’re asking people to understand their own power and how that affects other people. We’re asking people to really listen to families and to the system advisors and come into the room with an openness about what people say. So, I think understanding and being able to open up and see from a different set of voices and ways of being, and being able to really understand how your understanding of power is in a room, is what is needed to truly make something like this work across a system of this kind.

 

Narrator (00:51): Welcome to the Emerging Minds podcast.

 

Bec Edser (00:56): Welcome, everyone. My name is Bec Edser and I’m a Child and Family Partnerships Coordinator with Emerging Minds. This is the second episode of a two-part podcast where we are joining our conversation between three people, Dana Shen, Mel Lambert, and Yasmin Sinclair, who’ve been integral to the establishment of a lived experience network within the South Australian government’s Department of Human Services Early Intervention Research Directorate. If you haven’t already, I’d encourage you to listen to part one of this podcast where we started to hear from Dana, Mel, and Yasmin, about what it took to create a Lived Experience Network that facilitates families’ voices, genuinely informing systems, and some of their key learnings from undertaking a co-design project of this nature.

 

(01:45): In this episode, you’ll hear from Dana, Mel, and Yasmin about how the Lived Experience Network were able to embed the group’s existence and functions within the system that they had been invited to inform, as well as hearing some of the ways that really ensured that lived experience voices would be elevated. Let’s continue now first hearing from Mel and Dana about the development of the terms of reference and how they were able to ensure the longevity and sustainability of the Lived Experience Network.

 

Mel Lambert (02:16): One of the things that comes to my mind, which to my memory, was one of the trickiest parts to navigate, was actually towards the end of the co-design process for the Lived Experience Network. Was the terms of reference and really working out not just what the role was, but where the edges of the role were, and when someone moved on from the role, how long was a term? Who could be a member? Who couldn’t? How would recruitment happen? Was that just DHS interviewing? So, you and someone in DHS, were they involved and who? We drew on previous experience, which I think is a common misconception, co-design doesn’t mean you’ve got to create something innovative and new that’s never been done before. There’s a lot of borrowing and stealing from great practise elsewhere, and there are lots of lived experience networks in the mental health space and around the world.

 

(03:10): So, I remember us sitting with all these different versions of terms of reference from lots of different networks around the world. And they just sifted through and they worked out a bit of a patchwork of what they felt was right, but then negotiating that with DHS as well, who had obviously their perspective. It just goes to, I think, some of that policy and procedure stuff, that at the start when it’s all fun and exciting and we’re creating, it’s easy to forget that you need the systems in place if something goes wrong. Or you need the systems in place to keep regenerating and to keep the voice of lived experience relevant and refreshed. Because that’s not exciting, but it’s so important that people would know what the boundaries were and that new people could have a voice, which I know everybody wanted. But when it comes to that point where you might have to leave something you love, then that’s really hard.

 

(04:06): So, I thought the group did such an amazing job of being able to step back again and take that broader perspective on we’re building something here that needs to last. And we talked about that. What if DHS changed their mind? What if Yasmin moves on? So, then it was real incentive to let’s get this bedded in, let’s get the rules of this done so that DHS can’t do that.

 

Dana Shen (04:27): So, another really important stream when we were looking at the child and family support system, very central to that was actually how do we give voice, power, influence to Aboriginal people and all Aboriginal people, whether they’re families, whether they’re professional stakeholders and communities? So, that was actually a key piece of that work. There are a couple of things that came out of that. The first was that we developed a set of co-design principles that were taken from and developed from the words of Aboriginal people and allies that were in the room, and those have been applied in many different ways now across the system. So, I think that’s really powerful. We also had a series of what was called service design criteria. Again, this criteria was really about how do you ensure that there is a Aboriginal and Torres Strait Islander lens in the design of things across the board.

 

(05:26): And then, of course, what we had also is a very strong focus on ensuring that we spoke to Aboriginal families at the same time as well, to ask them how they felt and what was needed about changing the system as well. So, all of those things were woven throughout the whole of the way we worked and had its own very special place in it. I do believe that’s had quite a profound impact in a lot of ways when you’re actually having to do things like ask people to consider that in their services. It’s actually influenced and been used to influence the way people operate and work in the system. So, I think that’s really powerful. And that included the voices of Aboriginal families too.

 

Bec Edser (06:07): Mel had reflected here that this was about really amplifying the voices of lived experience and particularly Aboriginal voices, which Dana has also really supported in her work, collaborating with Emerging Minds. Dana continued to share with us what it is that’s really important for us to do and be consciously reflecting on to keep amplifying that voice of lived experience in our work.

 

Dana Shen (06:30): So, I think the first thing is that if we say that there’s a fundamental assumption that most systems are not constructed in particular ways, they’re actually constructed often for certain people in positions of hierarchical power to have influence. That’s fundamentally how things are set up. They’re not structured for community members’ family to actually have a real sense of power. So, because of that, you have to make sure that you reconstructed in order for that to happen. So, one example that we used during the child and family support system work was that we actually created an environment where we were in a workshop. We had predominantly professionals there, but we gave and empowered and I guess kind of like a senior role to the system advisors that had attended. And as you mentioned earlier, Mel, they had tools to use if they needed them. I don’t think they really used them at all.

 

(07:29): And what they did was that, and it was actually wonderful to watch, is that you had professionals working on multiple tables. And they would actually rotate around different tables and give their perspectives on things. And that influenced not only how people spoke, but influenced the direction of the ideas on there as well. So, they actually profoundly influenced that room because they were given the role, the right, the power in that room to be able to do it. So, I think that that’s one of the key things that’s really needed to elevate lived experience in a system.

 

Mel Lambert (08:02): I think, often, projects and co-design and systems recognise the need for the voice of lived experience, but it’s in a separate space, and never overlaps, and never intersects. And that can be for a whole bunch of reasons. And as we said, it took time to build the trust to enable that to happen. It took time to build the sense of power for those family members, those system advisors. But doing that is so important to actually create the change, because we did see professionals speak differently. We did see decisions made, and as you said, design was done differently. And I think that’s been one of the great things watching the Lived Experience Network develop, is seeing their role at the table with decision makers and with professionals that they become decision makers, co-decision makers with the professionals.

 

Bec Edser (08:55): This was a good example of the intentional ways that lived experience voices can be amplified and empowered through deconstructing the existing systems that wouldn’t have necessarily allowed for them to be heard. And there’s no doubt that practises like this have been integral to this group’s success. I was interested to also hear about some of the really important practical considerations that have enabled this Lived Experience Network to be effective.

 

Mel Lambert (09:22): And the other thing that crossed my mind was payment, that we actually acknowledge people’s time and contribution and reimburse them for that. And so, that’s something that Dana and I both hold dear and will only really do co-design work if there’s that commitment from a client to acknowledge and pay people for their time. Because as professionals, we’re all paid to be there. And it seems, again, like a massive power imbalance, that people coming with their lived experience aren’t acknowledged and respected for that time. And things like when things run, that don’t run something at 9:00 AM in the morning and expect families to be there, because they’re taking their kids to school. Don’t run something at 5:00 PM at night and expect someone living in aged care to go, because there’s lots happens in the evenings with dinners and transport. So, it’s about knowing the demographic that you are working with and designing things around them.

 

Yasmin Sinclair (10:23): I think the commitment from DHS to pay the system advisors a reimbursement for their time is significant because it really does add up, especially when you’ve got 15 people in the network. So, I think that’s incredibly important, as well as the resource of having my position allocated to do the work. It wouldn’t happen in the same way if there wasn’t that coordination, but also the support. So, the system advisors will sometimes reach out to me sometimes about the work, but also about stuff going on in their own lives. And so often, I’m a connector person to the service sector for them to try and connect them in with the right services. We structure the group so that we meet fortnightly and we have different presenters come and present to the group or consult with them about a particular policy area. So, the group know ahead of time what topics are scheduled and what our plan is.

 

(11:23): And I think it was really positive, because we’ve often got 10 or so system advisors and families in the room, and then one or two professionals coming to speak to them. So, the balance of power is different to what it’s like in the service sector normally. So, that’s been great, that they have developed the confidence and the safety to be able to provide feedback in that environment. But I think the other thing that DHS is wanting to explore more is amplifying their voices in other settings. And so, they’re trying to do a communities of practise. That is a new thing that we are going to start where we have some forums for executive leaders and then some forums for practitioners. And the Lived Experience Network were involved in one recently, and we asked them if they wanted to speak about the Adults Supporting Kids website that they’d been involved in designing.

 

(12:17): So, five of them put their hand up and we designed the questions with them and it was a facilitated discussion, but upon the stage. And I think that that was really successful. The families were really happy to have a say and to be heard by all these executive leaders in the room. So, I think that was a real powerful exchange of information, and I’m hopeful that that will continue and just grow over time, that their voices can be heard in that setting. And as you said, with practitioners and actually having the service sector think about families, and think about their language, and have them have that influence in the design of the work that they’re doing.

 

Dana Shen (12:59): And you remind me when you say that, Yasmin, that I think of some really, really important things of how something like this can work well and be well embedded, is that we are asking the people in the system that are working, the professionals in the system to actually bring certain things to this work. And I think there’s a couple of things. The first is that we are asking people to understand their own power and how that affects other people. We’re asking people to really listen to families, and to the system advisors, and come into the room with an openness about what people say. So, I think understanding and being able to open up and see from a different set of voices and ways of being, and being able to really understand how your understanding of power is in a room, is what is needed to truly make something like this work across a system of this kind.

 

Bec Edser (13:51): I asked Dana and Mel first, what tips would they give to an organisation wanting to set up lived experience systems and what things will ensure the sustainability and effectiveness of this?

 

Mel Lambert (14:04): Think really carefully about what you can and can’t do. What resourcing do you have? What are the constraints you’re operating within? And really challenging yourself about where you are and aren’t willing or able to share power. Because I’m sure Dana has had these conversations too, where an agency will ask to do co-design, but when you start examining some of those factors, it’s consultation, it’s not genuine co-design. So, I think if we’re talking about lived experience, this is about the voice of lived experience being around the table, fundamentally doing co-design with an agency. It’s not just a tick the box, it’s not just a nice to have. And in order for that to work, I think you have to have that foundational conversation internally about what you can and can’t, and what you are and aren’t able or willing to do. And then because if it can’t be done in a way where they have a genuine role that influences, then don’t do it.

 

Dana Shen (15:02): Another thing I would say is that it was really important, I think, well, I think it made a difference that Mel and I had actually met a number of families. So, we built a trusting relationship in a process where families felt that they had an influence. So, when you can build that and they can experience what that’s like, the ability for us to connect them into the next step was much easier. So, I think it’s really important that whatever you’re doing, that you have people involved in it that really believe in families, believe in people can build really trusting relationships with people, where you are seen as someone that they can trust and that you have their respect. You do need that because it takes a lot of time to build relationships with people where they genuinely go, “Actually, this could be real. Actually, maybe I might be able to really do something different here.”

 

Mel Lambert (15:56): And again, that was something DHS did really well, because having contracted us to work with them on co-designing the system and building those relationships, they asked us to then come in and work alongside Yasmin and really play a mentor role to Yasmin in co-developing the co-design of the system of the Lived Experience network. And we did that warm handover to Yasmin. It was quite a while before we withdrew and we’re more in that background mentoring role because those relationships were so important. You do need to tailor it to your context, and your need, and your population group, and the outcomes you’re seeking to have to create, but draw on what’s out there and learn from what’s happening locally, but also internationally.

 

(16:44): And really thinking about all of those structural things, about how is this going to last now, how do we kickstart this with the group we have now, but then a staff member leaves or families move on, or the lived experience advisors move on? And it can lose momentum, how really designing for the future to make sure that it feels boring at the time, but that structural stuff is so important to make sure it’s got long-term life.

 

Bec Edser (17:11): For Yasmin, supporting the running of the Lived Experience Network, she offered advice for others who might be in a role similar to hers, about the key elements that have been integral to the effectiveness of this group.

 

Yasmin Sinclair (17:24): Yeah, I think definitely the considering of resources is number one. I guess the first thing that you really need is that commitment from the organisation and the leadership. So, that comes along with resources. But I think my role has very much been about supporting the group and listening to the group, and helping them shape what we are doing. And I think sometimes services might think we don’t really have enough work for families to do to have an ongoing group. But I think what I’ve realised is that there is so many opportunities for them to have a voice and to contribute. And I’ve got a list of people waiting to meet with the group and projects that we need to contribute to. So, be creative. And once you start scratching the surface, you can see there are all these opportunities. The families, particularly in our Lived Experience Network, have a real passion for language and the words and the way we communicate our services to the public.

 

(18:26): So, we’ve spent a lot of time talking about language and contributing to the policy work and the language that is actually in some of our documentation. So, for example, we have practise guides for practitioners, and we did these brainstorming consultations with the group about safe home visiting and risk and safety planning, and how do practitioners do these tasks with families in a way that’s respectful and safe. And so, we brainstormed all of that, and then the DHS staff went back to their practise guides and inputted a whole lot of their words and language into their documentation.

 

(19:02): And then what was great that we were able to do was show those documents to the Lived Experience group, and we had it all highlighted in red, all their words and their contribution. And there was so much throughout all of the documents, they were just blown away that that was their words, and these documents were going to go to practitioners to help guide and inform their practise.

 

Mel Lambert (19:21): And that just brings me to a point that probably seems so obvious, I haven’t thought to say it yet, but yes, lived experience work requires resource and funding and time. But actually, in the bigger picture, it saves money and resource and time. Because what you’ve just described is improving practise so that families or staff are equipped and trained to build better connections with families, which leads to better engagement, which leads to better outcomes for families. And I think that’s true across the board because the Lived Experience Network at each turn are testing concepts.

 

(19:59): So, the Adults Supporting Kids website is a great example where you’ve done such great work with the group to really test elements of that website before it goes live, which means that that website is much more likely to reach the families it needs to reach and for it to resonate with them. So, I think it can be seen as this upfront cost, and sometimes systems can go down the path of we don’t have enough time, we don’t have enough money, but then money gets spent on designing services that don’t work.

 

Dana Shen (20:30): And whether people do this formally or informally, I really do believe that it’s important for everybody working in a system to really analyse their own understanding of what power means. I really think more people should be studying it in their personal lives and in professional lives, really understanding what it means to truly give space for somebody else that can often be considered or named vulnerable, can often be the people that we have to help. That’s often the language that can get used. And actually, what we’re trying to say is that, and as you’ve said, Mel, in many ways you’re understanding that, but you’re turning a lot of it upside down as well. And you’re actually saying, “Hang on a second, the vulnerable, the people we help are going to be able to help. They’re going to be able to help us to get this right for other people.”

 

(21:24): Not everybody or every system is ready for that. So, for me, I think study yourself. And study what it means to really experience what it feels like to have to give over some of those things for people to really have power in a system. I think it would be worthwhile, formal or informal learning that people do if you really want to make a difference.

 

Bec Edser (21:47): There have been many factors that have contributed to the success of this Lived Experience Network, including the system advisor’s commitment and generosity, the authorising environment and resourcing that the Department of Human Services has been able to offer, as well as Dana, Mel, and Yasmin’s considered planning and support throughout the co-design process. We thank them for sharing this journey with us. And remember, if you’re interested in learning more about working with Lived Experience Family Partners, you can check out Emerging Minds Child and Family Partnerships Toolkit. Thank you for joining me today.

 

Narrator (22:25): Visit our website at www.emergingminds.com.au to access a range of resources to assist your practise. Brought to you by the National Workforce Centre for Child Mental Health, led by Emerging Minds, the National Workforce Centre for Child Mental Health is funded by the Australian Government Department of Health under the National Support for Child or Youth Mental Health Programm.