Transcript for
Co-design lessons from the Lived Experience Network – part one
Mel Lambert (00:00): 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.
Narrator (00:16): Welcome to the Emerging Minds podcast.
Bec Edser (00:21): Hi everyone. I’m Bec, Bec Edser, Child and Family Partnerships Coordinator. And in this two-part episode, we will be hearing a conversation that I had the pleasure of listening to between three people who were key in establishing a Lived Experience Network. The group is comprised of 15 system advisors to the South Australian Government’s Department of Human Services Early Intervention Research Directorate. While developing a case study for Emerging Minds Child and Family Partnership Toolkit, consultants Dana Shen and Mel Lambert, as well as the Lived Experience Network coordinator, Yasmin Sinclair, met with me to share the journey that they’ve been on with this project and some of the learnings that they’ve taken away from undertaking co-design work that’s centred around children and families lived experiences.
(01:10): At Emerging Minds, we are committed to ensuring that the voices of children and families with experiences of adversity and resilience are included in our work. I was interested in hearing from Dana, Mel, and Yasmin, how they had done this effectively with the Lived Experience Network and what were some of the key ingredients to this network’s success. Dana and Mel kicked off the conversation by providing some context to why the Lived Experience Network was set up and how they were involved.
Dana Shen (01:39): A core piece of work that we had been involved in was the development and a redesign and co-design of the child and family support system. And there were key system elements that the department wanted us to focus on, but also we knew and our partners knew that a core part of that was actually having the family voice actually being central to the whole project. And so we ensured along the way that families were heard in different kinds of ways. So first of all, we started off with families actually in one-to-one or group interviews with us. And over time in the stages of the project, as we became more connected and more known by families and were able to encourage them to be part of what happened, they actually were involved in other parts of it as well.
Mel Lambert (02:31): As Dana said, it was a gradual process of building trust with the families we were working with. And so after the initial interviews and conversations with the families, we decided to draw them into some of the broader stakeholder workshops in a very supported way. And given their previous experience with child protection and with the system, they were nervous of that. And so we really worked with them to work out what role were they comfortable to fulfil, what supports did they need. And so we equipped them with some tools to help them remember that they’re there to help design the system, not to have to go through their story again, not to have to retell their story, which they were so used to doing with the system, having to tell and retell their story. So having to help them unlearn that and empowering and enabling them to be involved in professional stakeholder workshops, which they did amazingly.
(03:26): They designed their own role description. They give themselves a role title, which was System Advisor and that name is still used a little. And that gave them real credibility in those workshops. And it was really interesting, Dana, wasn’t it? Watching the professionals think about their words, think about how they were framing problems because these Lived Experience system advisors were in the workshops. So that was a really empowering thing for them. And then those families who were part of those workshops and continued into the Lived Experience Network. They then presented in the final workshop to showcase the whole co-design project, which was a how many people? 300?
Dana Shen (04:07): Yeah. Plus everybody online.
Mel Lambert (04:09): With the minister there, two ministers there in fact. And they sat up on stage and shared their experiences. And I think it was such a powerful experience for them and for DHS that it seemed impossible almost to let that lived experience voice not continue to influence the system. And so that’s when we were approached by DHS to continue working with Yasmin who came into the department to lead the Lived Experience work and co-design and network to continue advising because they just saw the value of it, I think. Would that be your impression?
Dana Shen (04:42): Absolutely. And I was looking back at the report that came out of this and it’s the richness of, I mean of course all stakeholders matter in big systems work, absolutely. But actually having the voice of families and the way they speak about things, they talk about it from pure experience. They talk about it as ordinary people speaking to all of us about what needs to change. And there’s something so special about that that it cuts through so many other things that can happen in a system of this type and it actually reaches people. So I think that that was strongly influential in why it was so important to go to the next step.
Bec Edser (05:27): Dana’s reflection here really resonated with me in thinking about how Emerging Minds Lived Experience partnerships really form the foundation of our work and ensure effective and impactful outcomes. The importance of building respectful partnerships that allow children and families to share with us their stories of strength, hope, and resilience as well as their challenges is absolutely key to reaching people. Next, we started to hear from Yasmin about when she came on board in her role as the Lived Experience Network coordinator. She shared with us what some of the key considerations were at this point in time.
Yasmin Sinclair (06:05): I guess really we just needed to do a lot of the trust and relationship building as well as what you did in the co-design process. I think we needed to allow time for that to happen again, and particularly building a relationship with me. And I think also because we weren’t sure exactly what the Lived Experience Network was going to be, it was about co-designing something together with that group of parents and carers and with DHS as well. So we spent a lot of that first year looking at what would the terms of reference be, workshopping ideas. The parents went out and interviewed family and friends and got ideas from them. And then yeah, we came back with some meat to put on the bones of this terms of reference. And it’s been interesting, I guess to review that over the last year as well and add to that and build on it.
Mel Lambert (06:55): And my sense was that at every point, the families, we needed to really not just build trust with us, but build trust that the system would actually listen to them. I remember just feeling rightly so that they were calling us to account at every turn to go, “Well, will this really change? Well, what if we don’t like that? What’s going to happen? Where are the decisions being made?” And just watching that building of their belief. And I have to say real credit to DHS as well because there were a few points early on where towards the end of the co-design project, there were some design principles that were created by the families and they were their words, and they were not bureaucratic speak, they were direct, they were the words of families. And we were really strong and they were really strong and those words couldn’t be changed.
(07:44): And the leadership in DHS did not want to change those words. But as happens in editing editions of reports, the words got changed somewhere in the edits. And I could understand why, and it was not intentional at all, but when we spoke up on behalf of the families and said, “Those words can’t change, those are the system advisor words,” they were instantly changed back. And so I think at every point, my sense was the spirit of co-design was across this work, even when at times, because you had to deliver something quickly or COVID, which hit us and then we couldn’t meet face-to-face. I just felt like we all worked really hard with the families and with DHS to keep that intention of co-design.
Dana Shen (08:26): And you touch on, Mel, what are the kinds of things that are required from people across a system if you want to make something like this work. And you’ve started talking about our DHS colleagues and I do want to make a few other points, which I think were important about this. And Yasmin, you touched on this as well. You actually walk into something when you’re thinking about co-design, not knowing exactly what’s going to happen, and actually you are holding that level of unknown for actually a long period of time and that’s exactly what happened. Or we’d go in one direction and have to go back again. And there was all sorts of things that affected this. And so I think the things that I really saw reflected in the way DHS staff people worked were a couple of things. First of all, we were always able to question power in the room always.
(09:16): And to be able to think about that, what does that mean? What does it really mean to give power to people in a room? So that was something that was just there and people knew it. I really appreciated that not only in developing the child and family support system work, that project, but also into this is that we always had our DHS colleagues in the room. I think the only way to create systemic change is when the leadership is actually in the room to do that and it’s the best way. And I thought that that was also really, really powerful.
(09:49): I also think something that I know, and it’s because I know a number of the staff quite well, which is great over a number of years, there’s a genuine care, concern, belief in families and their voices. It’s not just a kind of like, “Oh, we’re just going to kind of believe in this.” People do genuinely believe in it. And I think that’s another really important principle in general in this work, but also in co-design, is that you really believe that you’re an absolute believer in the voices of family. So I think all of those elements made the project go well, but also allowed the system advisors to develop over time and that network to develop over time as well.
Mel Lambert (10:34): The other thing that was clear was the constraints. Because co-design, you’re right, it’s evolving. We don’t know where it’s going, but in most systems there are some constraints we have to work within. It might be politics, it might be timeframes, it’s budget, it’s all of these things. And I felt there was realism about that as well. And while at times we would’ve loved more budget or more time, my sense was we, as the external supports, were never given a message via multiple people from higher up the chain, “No, that can’t happen. Go and tell them.” There was always that accountability for it that leadership was prepared to come and meet with the families and tell them those constraints themselves if there was a new constraint came in that they hadn’t expected. So that shifting grind, I guess, that is working in complex systems, I felt like they took real ownership of that. And we have to acknowledge having Yasmin as a member of staff so committed to the families and the fact that your position even exists is a massive enabler of this.
Dana Shen (11:38): Totally. Totally.
Bec Edser (11:40): You’ll notice here that Mel mentioned the importance of the department creating a dedicated position to support the coordination of the Lived Experience Network. This is similar to the Chatham Family Partnership coordinator positions we have at Emerging Minds that enable us to proactively include the voices of children and families with lived experience in our work. I was curious to hear from Yasmin about her experience of working in this role. What have been some of the internal processes that have supported her and what have been some of the challenges?
Yasmin Sinclair (12:12): It’s been a really interesting role because I feel like I’m in this position of liaison between the families and DHS and I have to make sure that I have a good understanding of both sides and where people are coming from. And it’s about bringing the two together. And I think at times there was some confusion from the families about what is this Lived Experience Network, I don’t understand, why we’re here, what are we doing? But I think that was kind of a positive in the end because by the time we finished writing our terms of reference, I think there was a sense of ownership over that because they went through that journey of confusion and uncertainty and came out the other side feeling like, well, this was our work. And there was some back and forward between DHS and the Lived Experience Network about adding things and changing things and it was a negotiation and I think it was upfront and honest and they were at the table. So I think that it was a valuable experience and there is that sense of ownership of the group.
Bec Edser (13:14): Yasmin was highlighting some of the things that the group struggled with at times in those early stages. Things like knowing what their role was, knowing what they were doing, why they were all there, and understanding what the Lived Experience Network’s purpose was, all things that needed to be worked through while sitting with the uncertain feelings, this product. But it sounded like really taking the time with this was an absolutely worthwhile process and led to the system advisors really having that sense of ownership of the group. At Emerging Minds, we recognise the importance of offering opportunities for our child and family partners to build their skills to equip them for the involvement that they have with our work. I was curious to hear from Dana, Mel, and Yasmin’s perspective what it takes to build a Lived Experience Network in terms of the skill development required.
Dana Shen (14:06): You need to have people bringing a certain way of thinking and being into this kind of work. I think the first thing is that you absolutely believe in people. I think if you believe in people and I know the three of us, that’s our values, that’s how we work. Then the wonder of people, it just comes, it just arises. And so if we think about the kinds of things we went through, we talked about co-design, we went through step by step what the processes look like, et cetera. We tried different things with people.
(14:38): There was just so many ways in which we tried to do things that would work with people to design in ways that felt right for them as well. It’s a shared learning about what does it take to ask a family to help to co-design some stuff when they’ve actually got their own family with children and with all sorts of things going on in their lives. So it was like you find ways to learn about what this way of working can really look like in the real lives of people. So I think it was a shared approach though of course we went through the steps that we knew were important about skill development. But in the end, you leave better off really in terms of your knowledge and your skills yourself.
Yasmin Sinclair (15:22): In addition to the co-design skill development that we did, we’ve offered training to the system advisors, range of different sort of certificates and courses that they’ve been able to participate in. And DHS were really clear from the outset that they wanted the system advisors to get something out of it so that there was skill development and training in the process. But I think that formal training, while it’s really valuable, there’s so much growth that has happened I guess organically over time and just creating opportunities for the families to talk with one another and have people come and consult with them and ask them questions and have discussion. It’s allowed them to grow as people and develop confidence and skills that they always had, but that they’ve really been able to shine in that space. And yeah, I definitely hear that from them that they talk a lot about their self-confidence and their self-esteem and the impact that being involved has had. So I think that’s a wonderful outcome.
Mel Lambert (16:26): And you talk about building the skills that they had but they really didn’t know had. I think that’s a lovely way to put it because often we don’t know what skills we have because we haven’t had a chance to use them. And I guess for some of these, particularly some of the younger members of the Lived Experience Network, it was their first experience really of being in a professional environment in that sort of influencing policy. And so it was hats off to them. I just think what a baptism afar to suddenly be thrust into this position where you’re speaking to the executive director in a government department.
(17:00): And I just think they impacted and as you said, at every level in the system, people have learned from them. And for them to see that impact I just think is really critical. And again, all that additional training they’ve got is so helpful and I think you’ve done such a great job and the department has about addressing some of the barriers they manifest. So you always met, I think here or most times here, which is a lovely community centre with a playroom and it’s a safe environment, it’s not a government building, helping with transport, childcare and paying attention to that, some of that social stuff, giving them that opportunity to network. And I think what I loved watching, even when we were on Zoom, was that peer support that they were offering each other, that they were connecting with each other between sessions and building a real strength and confidence together.
Bec Edser (17:57): The skill development training and other opportunities the system advisors have gained from their involvement with the Lived Experience Network as well as the peer support and personal growth and confidence they have experienced have all been ways that DHS has been able to give back to the Lived Experience Network. After completing their term with the Lived Experience Network, the system advisors have had a range of resulting opportunities, including some system advisors now becoming child and family partners with Emerging Minds. Next we hear from Dana, Mel, and Yasmin about the important balance of providing safety and being trauma informed in Lived Experience work, while also offering choice about the opportunities to be involved.
Dana Shen (18:43): This is what I’ve learned with working with people with lived experience, and I’ve done a lot of work with working with my own people, Aboriginal communities as well. I think sometimes what we can do is you get to a point where caring for people as in caring for people to not re-traumatise can at times really disempower people because you are making a judgement about what someone should be involved in and what they shouldn’t be involved in.
(19:13): And actually what I’ve learned across every bit of work that I do is that actually the most important thing and the most de-traumatising, whatever the right word is for it, way of doing this is actually that you give people a choice that you actually ask, “We would like to explore this for a little while. How does people feel about that?” Or, “We might want to work in this site, is that going to bring up anything for you?” You actually ask people their view on it to give them choice. And that power, that sense of power is the thing that helps people to be able to do this kind of work and to understand what it is that’s right for them.
Mel Lambert (19:50): When we reached the end of the co-design process and we were looking for people to be part of the ongoing development co-design and I remember we went back to families who probably we didn’t think would do it, but we asked them. And you’re right, you’ve framed it really beautifully. It’s about empowering them to have the choice over their own life and that we are not making a judgement about whether they’re ready or not, whether they’ve dealt with issues enough to share their experience, but to give people that dignity of choice and power to say, “Well, yeah, that is something I want to do.” And as a result of that, the diversity in the group was amazing. And as we tried to expand the network, that was more intentional, but that really bubbled up from the people who we met during that process and who said yes to that ongoing co-design. So not just cultural diversity, but age groups, perspectives, family size, where they lived, how they lived. That was something I think, which was a real strength and something that in co-design is so helpful and enriching.
Dana Shen (20:58): And you also remind me that when choice is given and when people get to choose where they are and in something, then they have the sense that they can tell you when something isn’t right or if they don’t like it. People were very respectful about it, but we had moments where we were pulled up about the way we’d said something or the process that we were going to apply and they just said, “We don’t like that,” or just needs to change or whatever it is. And that’s actually what you want to keep people safe in a lived way.
Yasmin Sinclair (21:28): Being guided by the families is so important. But yeah, I guess from an organisational perspective, DHS has had to figure out how we could support this group and make it actually happen. And things like employing great staff, people to actually care for the children whilst we were meeting, that was a real challenge and it took a lot of navigating the system to try and work out a solution. Unfortunately, we couldn’t employ people. We didn’t have the right award to employ people ourselves, so we had to partner with another agency to provide that service. And so that took a while to establish, but I think it was so important that we continued that path that we didn’t just shut it down and say actually providing creche is too hard. So yeah, that was really important for me to just continue to push that until we found a solution.
(22:21): And recently the family said to me that they wanted to meet more in the north because they were travelling quite a long way to come to the Western region to our meetings. And a lot of that was just about room availability, but I just had to try that bit harder and keep exploring until we found a venue in the north that we could use. So yeah, I think responding to the family’s needs is really important. And I think touching on that issue of trauma and keeping people safe, I think whilst that’s really important and we highly value looking after the group, it is about empowering them to make that choice themselves. And so I try to be as inclusive as possible with the group and let people know, be really transparent that this is the topic that we’re going to be discussing on this day and how do you feel about that and who wants to participate. And some people will opt out and others will be quieter in the group on that session and that’s okay. So yeah, definitely giving that choice to them is important.
Bec Edser (23:21): Yasmin, Dana, and Mel have reflected on the importance of being responsive to the family’s needs at the same time as being transparent and giving families choice about their involvement. It’s clear to hear that this approach to creating the safety that’s required for the group has been really key to its success. In part one of this podcast, we have heard about the importance of centering family’s voices in a co-design project of this nature, how Dana, Mel, and Yasmin were able to build trusting relationships that really considered power and demonstrated a belief in the families and the systemic change that they would affect. Stay tuned for part two where Dana, Mel, and Yasmin will discuss 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. You can learn more about working with Lived Experience Family Partners in Emerging Minds Child and Family Partnerships Toolkit. Thank you for joining us.
Narrator (24:32): 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 and Youth Mental Health Program.