Episode 1: Diagnosis to Discovery, Part 2: Navigating Together

Acknowledgement of Country

Today, we say thank you to the First Peoples of this land. Our main home is the Health Translation Hub at UNSW in Randwick. 

This is Bedegal and Bidjigal country. They have cared for this land for a very long time.

Many of us are joining from other places today. We say thank you to all the other nations, clans, and communities across New South Wales and Australia. We honor the country that each of you are on right now.

Aboriginal and Torres Strait Islander peoples have looked after these lands for a very long time. 

When other peoples came to Australia, it caused great harm. That harm is still felt today.

Through all of this, Aboriginal and Torres Strait Islander peoples have stayed strong. They keep a deep and special connection to their country, their culture, and their traditions.

We will walk gently on this land. We do this with respect, with care, and with a thankful heart. We remember that sovereignty was never ceded, which means never given up. 

Aboriginal and Torres Strait Islander peoples never gave their land away. They never signed it away or agreed to hand it over. So this land always was and always will be First Nations land.

This Acknowledgement of Country is ready by Skie Sarfaraz.

Transcript

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Narrator 1:50

Welcome to Growing Stronger Together. People with intellectual disability, families, and support people navigating the world. This podcast is brought to you by GeneEQUAL and host Emma Palmer. Emma is a kids' doctor and clinical geneticist who is part of the inclusive GeneEQUAL team. This is part two of our conversation with Stacey Touma, Navigating Together. In part one, we heard about Stacey's personal journey, navigating her son Alex's diagnosis with Williams syndrome. Now we explore how that lived experience led to her work with Belongside Families, a revolutionary family-led organisation supporting parents and carers across New South Wales.

Emma Palmer 2:35

So it's been beautiful hearing your personal journey. And what I was hoping we could talk about a little bit more now is the entity that is Belongside Families. Where did that come from? And what are you trying to achieve with that?

Stacey Touma 2:53

So Belongside Families established six years ago. We are a family-led, independent, not-for-profit organisation that is for parents and carers of children with all disabilities in New South Wales.

Emma Palmer 3:09

So being a family-led organisation, and I know you have these incredible events, so I'm imagining lots of conversations come up through all of these events. Yeah, absolutely.

Stacey Touma 3:20

Connection is at the heart of what we do. As a family-led organisation, all of our staff members have a lived experience of parenting a child with disability and all different disabilities living across New South Wales. So bring such a diverse understanding of family experience. We have parent peer support groups that we run online and have just launched in person as well. And they are those spaces where families come along with those concerns and with those questions and seek advice from other families. And I think it's so powerful. We don't need to reinvent the wheel. There are families that have walked this path before us that have had the same questions, come up against the same barriers. And there is so much that we can learn from their lived experiences. And that is the power of peer support.

Emma Palmer 4:13

At the bottom of my clinic letters, after diagnosis, I give a short list of organisations that I really believe in. One of them is Belongside Families. So I give your website and I say this is peer-led support. But I know that many of the families I wish would connect with you actually aren't, because there's so many things going on. Can you almost frame what would a family get or potentially get, or even just think through an individual family, maybe recently, that's connected with Belongside and how that was helpful or changing for them?

Stacey Touma 4:48

As a parent of a child with disability myself in those early days, I don't even know if I would have seen the value of it without actually understanding what it is I'm going to get. And I think it is around that lived experience of not having to reinvent the wheel. It is those system navigation tips. So I think we have families come to us that might be entering education or early learning and just not knowing where to start. Or they might have been told quite often, which is very common, that you'll see a paediatrician and they'll say, Your child has this diagnosis. Here is a list of speech and occupational therapists, off you go. And they're like, Well, what does a speech therapist do? And how are they going to help my child? And so when families come to us, we build their capacity, we grow their knowledge, we grow their skills. So we have workshops covering a range of topics. So we have workshops on how to make the most of therapy. You know, what is therapy? What does good therapy look like? What is your role as a parent in these sessions? So the purpose of therapy is to build your capacity as a parent. You're the one that's with your child most of the time. So it's just as we would in our professional lives, we invest in professional development. And it's really what we see the role of Belongside Families around investing in the parent to navigate systems, to support their child and to really work to getting better outcomes. So we do that through workshops, we do that through webinars, we have resources, peer groups. We have a one-on-one support service where we provide some more tailored support around helping families to navigate systems and across all systems. So education, we've got workshops where we can help families understand how do you build partnerships with your teachers? What are the roles of the different people in an education setting? What is your role? What is your role in medical appointments? And I think it's really easy as a parent in those very early days to take a bit more of a backseat and think, I'm just the parent, these are the experts. I will be guided by them. But as parents, we have a really important role in working in partnership with specialists, with educators. And what we do is help families to build that knowledge to know how to do that and how to work. We very much take the approach of partnerships. We see specialists, health care providers, educators as such important people in our child and family's life. But how can we work together to get the best outcomes for our kids and families?

Emma Palmer 7:31

Okay, so that was for me so helpful because that analogy of you'd invest in your own professional development at work. This is investing in you because you're in a world you have no guidebook for. And this is people that have walked that journey before and who can break it down and be accessible. You don't have to get on a wait list for six months to see someone pay $200, $400 to see someone for half an hour. You can actually just tap into that expertise and understand it at a pace that works for you.

Stacey Touma 8:08

Oh, absolutely. And in all different formats, we were just reflecting the other day. We've got this wonderful workshop where we help families with what we call "The little-a -dvocacy". So that everyday advocacy in working with schools. And it's this incredible workshop where you walk away with resources, frameworks, a toolkit on actually how to go forth and do that. And that's a one and a half hour investment of your time as a parent. And it's so empowering to be able to learn with and from other families because in these programs that we run, we have a curriculum, we share our experiences, we share experiences and tips that are based on best practice and are informed by evidence. But it's actually the learning alongside other families and the tips that they share as well that's just so powerful.

Emma Palmer 8:59

It's beautiful. And I can't think of any other organisation that does what you do exactly. Do you do like a workshop of how to get the most out of your specialist or your clinician? Because I often find um families, you know, they don't want to bother their health professional. And I'm like, well, that's their job to be bothered. So I just, yeah, thought that would be really interesting, like how we can break down some of those barriers between health professionals and people. Oh, absolutely.

Stacey Touma 9:28

We've done a little bit of work in the health care space, but this is definitely our priority, strategic priority area. A lot of families that we're speaking to are just really finding that power imbalance. And quite often it's not like they've got wonderful health care providers. It is just that feeling going into those spaces where, you know, you don't know the language and the way we've been conditioned. And so I think helping families to understand what is your role, how do I work with that health care provider is really important. And it's something we need more of.

Emma Palmer 10:05

You know, just to bring it back to communication with the young person with intellectual disability at the center, like if their families are struggling, how to have those relationships with health care professionals, how are we helping empower that young person to have true partnerships with their health care professionals going forward? To me, it's such a gap in our system.

Stacey Touma 10:25

Absolutely. It is a gap in our system, and it really is a gap in what's available for young people and families. We're just actually launching tonight a workshop called Transition to Teens. And part of that is helping families. We provide them with frameworks around involving your child in goal setting, in planning conversations and how you can support them to really amplify their voice because there is a gap. And it's quite concerning to think about your young person getting to 18 or even earlier, where they are solely responsible for making decisions if they haven't been involved early on to even understand the health care . Yeah. I was at an appointment with our cardiologist about 18 months ago. So Alex was, I think, almost 12. And at the end of the appointment, she said, Oh, Alex, like, do you have any questions? And he looked at me and I was like, Oh, do you have any questions, Alex? And he said, No. And I realized, well, I actually it's become a routine for us that, oh, Alex, you don't have to go to school today. We're going to see your heart doctor. Like I even kind of minimize how I speak about it. Yeah. And he'll say, Well, what are we doing? You know, they'll put the thing on your chest and we'll talk and, you know, then we'll go home. And so I realized that actually I have a role as he grows to involve him in those discussions. And the cardiologist was really great, you know, giving some tips around prepare him just even with one question to begin with. So he feels empowered in those meetings and can start to be an active member of those discussions and in his own health care . He does start as a parent in understanding how to involve your child, because I am quite good at involving him and really listening to him, giving him a voice and not just giving him a voice, but acting on that and making sure that we're very much directed by him in a safe way. But I do find it really hard. Like, how do I support him to be involved in his own health care ? I still don't know. I'm like, how do I? I'm asking, how do I?

Emma Palmer 12:40

Well, you know what I was thinking about? I was thinking about your, was it the cheese sandwich? What was the thing he made? The toasty. The toasty. I think it's we give him more chances to make toasts in as an analogy. In health care , which is that if you don't know what your health care rights are and what your health care responsibilities are, and you're not able to actually know that you can make decisions. And that might be uh, I was talking about this with a colleague of mine, and she was like, maybe just it's very simple things when you start. It's like, which chair do you sit in? But and also exactly that point, like your cardiologist was raising prep with one question and then it's two questions, then it's three questions, and just build in that ability to actually understand. I'm not just going to this appointment and mom and dad will talk and then we'll leave. It's this is why this is about my health, this is about my heart health and how we have those conversations. And I think, again, we can't be expecting parents to know how to do this. It's up to us as clinicians as well to work in partnership and say, these are some tips that other people have found really helpful.

Stacey Touma 13:47

And I think even the clinician having that responsibility to explain to the person at the beginning, like what is the purpose of this appointment? Because I even find it hard sometimes to explain it in a way that Alex is going to understand what is the purpose of this appointment. And I think being able to have that clinician talk about the appointment, talk about what are we going to do today? You know, we're going to do this and we're going to do that. Why are we doing this? Yeah. And helping them understand. And I think doing that bit by bit at each appointment and building their own capacity, unless you know why you are there, you're not going to be actively involved in your own health care if you don't understand the why.

Emma Palmer 14:33

And to me, this brings back to look, the reason I chose clinical genetics is I see it as a potential, as a strengths-based approach. So if you know what health issues may come up for you, if you know that certain teaching styles may better suit you, then it's actually using that genetic diagnosis as a superpower. Like it's helping you to have the health that's right for you. And at the moment, it feels like if we're not having the conversation so people know what their diagnosis is and what that means, then how can we expect people to take control of their own health care? And why are we surprised when people come to the age of 18 and they're outside of the Paediatric system and they stop having their health checks and they don't have their vaccinations and they don't have their mammograms and the awful statistics that we see in the gap with health outcomes for young people and adults with intellectual disability. So I think you're absolutely right. It is on all of us to do this differently and to be guided by people with intellectual disability. There's something I was wondering about. You were talking about that process early on after diagnosis where you were so focused on fixing him and you used that word. And I just think that is often something I see because we have such a society that is scared of disability, that when a family learns their child has a disability, it's about setting up a foundation to cure to fix.

Stacey Touma 16:08

Were you gonna say that you came to a sort of it wasn't fixing Alex, it was helping Alex live his best life, or like I guess for us it was that reframe and we kind of had a bit of a moment of why we got to that point and we thought something needs to change. I was a parent that would go along to those appointments and just sit in the appointment thinking it is responsibility of the therapist to do with my child and fix my child. And that is the purpose of going to a therapy appointment. And the more of those I can do, the better, because the more is going to equate to more fixing of my child. And I thought that's what was going to be best for him and for our family. And we did that for a few years. We traveled all over Sydney. That was our life. And it was when my third child came along. I then had three kids, under three, that I was taking along to all of these appointments and working with a therapist that would have my two and a half-year-old son sitting at a table doing table work, and he's a very energetic child. And I thought, this is not working. Like there must be a different way because this is not working. So exhausting. Oh my gosh, it was awful. And she would say, you know, then we would be given homework to go home and basically replicate that.

Emma Palmer 17:36

So there was no family time.

Stacey Touma 17:37

No, and it was so stressful trying to get a, you know, two and a half-year-old to sit at a table and do these table, like it just made no sense. And while I didn't know what a better approach might look like, I just knew that wasn't working for our family. Coincidentally, at that point, I actually connected with a new provider just through a funding model, which meant I could access it where I wasn't paying out of pocket. That therapist was using a best practice, family-centered approach where she took into consideration our entire family. Like Alex doesn't exist as an individual. He comes as part of a family. He's got siblings, he's got parents, he's got other people in his broader family. So she really took into consideration what our family dynamic looked like, what our culture looked like, what our goals were. It was the first time that somebody actually ever asked, what are your goals? Not just thinking, okay, well, developmentally, this is the next milestone we should be working on, but actually what's important to your family and involved me in the sessions and showed me what I could do in a way that worked for our family. Actually, in a way that involved all of my kids.

Emma Palmer 18:52

To me, everything links up that it's about actually sitting down and saying, what are the goals? What are we all working towards here? To me, what you described was a passive, like I'm sitting there, the professional is doing something, my mom gut is screaming, this is wrong. But um they're the professionals, so I sit here. And I think this happens in health all the time. And I think this is even worse than that, that people become traumatised by the health care system. I mean, there's so many families I know with a child with a rare condition where they have been traumatised by the health care system because they've been disbelieved, and their mom gut or their parental gut or their own gut, if they've got the condition, has been dismissed. And so they're they move from partnership away to fear, to withdrawal, to poor outcomes for everyone.

Stacey Touma 19:45

Absolutely. And it is important as a family member and as a person with disability to know what your rights are in navigating the health care system, in navigating education, and to be able to have the skills to not just understand the why, but the how to. How do you build a proactive, positive partnership with your health care provider, with your teacher? What does that look like? What's your role in that relationship? What's their role in that relationship? What does constructive communication look like? Thinking about what's your prefferred communication style. Sometimes it can feel really overwhelming for some families, sitting in those appointments and feeling really overwhelmed. What do you need? Is it that you need to bring another person with you? Is it that actually a phone call would work better? It's about identifying what works best for you. And then I think just having that confidence to communicate that to the health care provider, to your teacher, to the principal, whoever it might be. And I think that's a really important part of recognising as a parent that you have a right to communicate that and to have your needs met as well. But it does start with first just identifying what those needs are.

Emma Palmer 21:05

And that brings us back to quite a lot of conversations in the GeneEQUAL group when we all found out at the same time about the patient charter. So the patient charter is there for every person in across Australia getting health care . And it says, I have the right to accessible information, the information that makes sense to me. So we shouldn't need a GP translating. Every single health care professional, it's actually our responsibility to give information in a way that makes sense to someone and has their needs recognised.

Stacey Touma 21:35

Yes. And I think just as a parent, I recognise it's not always easy. It's very easy to say, you have rights, communicate what your needs are. It's not easy. I'm not a natural advocate. I have found this to be extremely hard. And I still find this very hard. But it is about going into those appointments, being prepared. I would be really open and I will say, I don't actually understand what that means. Could you please explain it to me? Or what does that word mean? And I'll say, can we just pause for a moment so I can write that down? And then I'll repeat it back to him. Like, is that correct? So I've just really thought about what do I need to be able to understand this, but also to be able to record it in a way that then I can go and share it with other important people in our lives, whether it's specialists or teachers.

Emma Palmer 22:21

And to me as well, for Alex, sitting with you and you modeling that, and then you bringing him more in so that he's asking his questions and he knows how he can ask if I don't understand something. To me, that's a beautiful, gentle way of stepping him through that. And, you know, we did some tips for health care professionals and all of those things you mentioned, but we were trying to say be more proactive as a health care professional. So up front, explain if I use a word that you don't understand, stop me. It's really important for me that I understand that you've understood. And that's so powerful.

Stacey Touma 22:56

I think in the way you describe that around explaining why are we doing this, I think that's also a really good relationship building technique. It shows that you value them and you want that person to be able to be empowered and to understand what's happened in this appointment. And this is why I'm doing that. We have some great people on our team. Um, we're very fortunate. And what I love is when I go into those appointments and that they talk to Alex and to me. I love that. I think the first time I was a bit like shocked, and then realizing, oh, this is so powerful. But I love when the conversations direct firstly to Alex and he's 13 and he's older, and and then I will be brought into that conversation. I think that has been really powerful, and I think that's a really great way to model it as well, to actively involve him and to see that actually his voice matters and that he does have that important role in those appointments.

Narrator 23:57

In part two of our conversation with Stacey, we explored how Belongside Families supports parents through peer connection and practical system navigation, helping families move from passive participants to confident partners with health care professionals and educators. We heard about the power of professional development for parents, the importance of involving children in their own health care decisions from an early age, and how to break down those barriers that can make families feel they're asking too much. In part three, living a good life, we get practical. Stacey will share concrete strategies you can use today, from creating visual documents for appointments to having honest conversations about disability in schools, to Alex's own vision for independence. It's about turning all these insights into action. Join us for the conclusion of this conversation.