Young Carers Special Interview with Little Dreamers Founder, Madeleine Buchner OAM

Welcome to the lived experience. I'm your host, Joel Kleber. And on today's episode, I'm speaking with Maddy Buckner, who is the founder and CEO of little dreamers organizations, which supports young carers all throughout Australia can check out their website, little dreamers.org.au I'm gonna put the links in the bio. But this organization not only helps kids who have a parent with a mental illness, it helps all carers, so there's other carers. So Maddie Matthews mum had breast cancer, and she had a brother with various chronic illnesses. So she created an organization that wasn't around to help people like her. And it's just amazing what she's done. She's an Australian medal winner. She has won some other awards as well for this. But you know, it wasn't always easy, as you'll hear in Mary's story. So, big thanks to Maddie, for doing this. And please check out the links in the bio for little dreamers and satellite foundation as well. We do some great work, you know, these these are the types of organizations want to put your money towards. They're not that big, but they make a huge impact on young people's lives. So big thanks to the money for what she's doing. And I hope you enjoy the episode. Well, thanks for doing this Maddie, I really appreciate it. And Maddie, for anyone who doesn't know her, I'm gonna put obviously a full description, but I'll let you introduce yourself as well. So I don't make anything wrong. But you're from an organization called Little Dreamers. And this podcast is about sharing stories of children, young people and adults who have had a parent with a mental and mental illness, right. So when I saw your organization, I know a bit about satellite Foundation, Victoria, and I saw your organization on Instagram, it's not only kids who either parent with a mental illness, it goes beyond that it's the full gamut of young carers. So maybe you want to talk about your lived experience yourself. And then what made you then start with a little dreamers organization?

Definitely. Thank you so much for having me. i I'm so excited to be here and to be able to talk to you about this. And it is such an important conversation to have. So I just I just wanted to acknowledge that as well. So oh, sorry, I just can't access your video. Hold on. Is that Yeah.

Yeah, it's going okay. So basically, because we're recording over on the internet, it can be a bit laggy and stuff like that. But um, post recording, you'll be fine. It'll be like, it just bugs around whilst we're doing it, unfortunately. So storage for on your computer, apparently, but I don't think it should really matter.

Okay, sorry about that. I can I'll stop that again. Thank you so much for having me. I'm super excited to be here. And I think having these conversations is incredibly important. So thank you for for shining light on on young carers and on lived experience and mental health. As as you mentioned, I grew up as a young carer, so I grew up as a young carer for both my brother and my mom. My brother has a range of chronic health conditions and learning difficulties, and has a range of allergies as well. So he's allergic to dairy, eggs, soy, lavender, kiwi fruits, walnuts, and wool. And he's also grown up with asthma and adrenal insufficiency, fibromyalgia, and capsulitis in epilepsy. So he had a very poor immune system and was in and out of hospital a lot when he was younger, and then when I was 14 years old, started caring for my mum as well. So my mum was diagnosed with breast cancer, she was very, very young. And then she went through all of the treatments that come through that are come with that she lost her hair with chemotherapy, and has been left with rheumatoid arthritis in her hands and her feet and osteoporosis as well. And I have also, I mean, I've done all of my caring alongside my dad, but have also supported, supported him and supported my mom and my brother at different times with their mental health as well. So as someone who's grown up with anxiety as well, it's there's lots of different layers, I guess,

must have been extremely tough. And so then, what when did you decide to what was going back to when you were growing up? What support was then offered for you? Or when you're going through this situation? Was there any way to turn? So what happened from the

offspring? Yeah. So growing up, I there wasn't a huge amount of direct support. I was supported by an organization called CaReNet, which isn't around anymore, but it was kind of like a Big Brother Big Sister program. So I they called them co pilots. So I had a co pilot, her name was Angie, and she used to come over and hang out with me and help me with my homework. And we made a mosaic mirror at one point, so lots of arts and crafts and that kind of stuff. And that was really special for me. But other than that there was no real support for me as a young carer. I mean, I didn't even know what the term young carer meant when I was younger. So I think that a lot of the time, I felt quite overlooked and isolated, but also felt quite guilty for feeling that way. When I wasn't the sick one in my family. I felt like why, why should I deserve attention? Why should I need extra support? I'm healthy. And so I think That was something that I went through a lot when I was a kid as well.

Yeah, I've read one of the reports on your website, which was the Griffith University, we haven't yet said a lot of people, a lot of kids in our situation would not even identify that term young care, right. It's just their normal. This is my circumstances, my parents, and this is you know, a lot more. It's my family member, this is what I just do, right? So even have that term young care. And then to even, as you said, the self esteem thing to then believe or you're worthy of, let's say, all this good stuff happening to you as well. It's quite a common problem.

Yeah, yeah, definitely a common problem. I think that I mean, even now, the I call myself a young carer because it relates to my work. And because it's an easily understandable term for the people who aren't carers, I guess you're a young person, you provide care, it makes sense. I think it's tricky when you're a young person providing care yourself. Because often, a lot of the time there are people in your family who have a lot of labels on them, whether it is a mental health label, or whether it's a disability, or an illness, or an addiction, or whatever it might be that I didn't want. When I was younger, to have a label myself, I was like, Well, everyone else in my family has that. Why do I need a label to and I feel like that's something that we struggle with, with working with young carers. And what young carers struggle with themselves is around that recognition and identification piece. But also, because, at least for me, growing up, I didn't think I was doing anything different, or unusual, I kind of just assumed that everyone knew their way around a hospital ward. And everyone knew how to get the best snacks at a hospital and everyone knew how to call an ambulance. I didn't realize that that was something that was unusual to my peers. And I think because of that, it meant that there were a lot of things that I didn't feel like I needed to access, or I didn't know about too.

Well, how did it go with dealing with, you know, being at school and things like that, that sort of, you've got this stuff going on at home? So how did you manage to work your way through being growing up for schools, we know that adolescent years can be very tough as it is normal circumstances, but to have this going on as well plus school? How was that for you?

I was really badly bullied at school. I think it came from a combination of my brother was really different. I was always looking after him, we went to the same school. And so people knew that, that he required a lot of extra support in the classroom and things like that. And I was often standing up for him. My family was not wealthy, we we struggled financially. And so there were a lot of things that we couldn't do, or we couldn't afford to do. And so I was really badly bullied for being different. I think that my values growing up were also different. So I, instead of wanting to go out and hang out with my friends and do all of that kind of stuff, I often wanted to stay home to make sure I was there to provide the care that needed to be provided to my family. So I think that like I think I struggled socially at school. But educationally, I guess I was very lucky. I'm, I'm good with books. I love reading, I think, you know, my marks were always really good, except for the fact that I used to lie a lot at school. And I think that came from wanting attention. I didn't get a lot of attention at home because of my brother. And so I used to make up these extraordinary lies and tell incredibly tall tales at school. And I tried to pass off a plastic platypus one year for a school project saying that I'd made it and I got into much trouble but it said made in China on the bottom of it. So I definitely didn't make it myself. But yeah, I think educationally I was okay. But socially, I really struggled at school.

Yeah, I'm sorry to hear that. Because I'm awkward because what people don't realize bullying, obviously, in general is bad, right, obviously, but to have the your situation going on, and then to have kids still, you know, you got that bullying stuff at school, then you've got to try and succeed as what you're doing. It's just a very, very tough existence. And I don't think a lot of people understand with people, whether young carers and stuff if they are bullied, for example, just to have that bloody extra level of unnecessary problems in their life. And, you know, it's almost like it's very tough for the kids because you don't want to go until the teachers because then you get labeled a snitch, or whatever it is. Yeah. And then but you've got to deal with all this other stuff. It's just, it's just this whole big melting pot of just just dramas, and then you got to succeed at school.

Yeah, yeah, definitely. And I grew up with really bad anxiety and a lot of young carers do have anxiety and things like that. And so throw in a caring role bullying, insane amounts of anxiety and you've got Yeah, kind of like a disaster waiting to happen.

What did you do for yourself that personally, was it like eating into an instrumental What did you do yourself to take yourself out of that?

Oh, I wish I was musical. I used to read a lot. And I listened to a lot of music. I find that listening to music still today is a really big escape for me. And my CD collection was next level when I was younger. And same with the books that I used to read. And so that was kind of what I would do to escape and I also used to dance. So I was a dancer growing up, not a very good one, but I used to go to dance classes as well. So that was that was kind of what I used to do for myself.

So then how did you come about founding little dreamers? Was it just something where you saw a gap? Like, you know, I didn't have the support and like, I'm actually gonna do some something about it, or how did it all come about?

Yeah, so definitely was finding a gap. So I originally, it was originally called the Canuck kids club. So Ken at the organization that I was supported by, there was three of us, me and two of my best friends who founded the Kennett Kids Club, we wanted to fundraise and run events for to raise money to make sure that every child who had a sick sibling was able to access a co pilot. And we ran a couple of events. So we actually started fundraising when we were nine years old. And it's 20 years this year in July since our very first fundraiser. And we ran a whole range of different fundraisers from potties at the Hard Rock Cafe through to movie nights. And we had a sports clinic with the Harlem Globetrotters. And then from there, it kind of just spiraled. So we wanted to then start raising money for other organizations, and then just kept it so then we became the kids club, but it was K IDs dead because it was early 2000s. And we were really cool. And, and it stood for caring, independent, dedicated siblings, but caring with a K and siblings with the Zed. Because yeah, it was the early 2000s. And then, when my mum got sick. In 2007, we, there was kind of a few people in the original kids club that had dropped out they, it wasn't a passion for them. And that that's really fine. We were young. And there was three of us that joined a competition called Youth inspire, which was how do young people come up with an idea that would change the world. And we was the first and only time I've ever written a business plan. But we we pitched this idea for an organization called Little dreamers that supported at the time siblings of sick kids. And then it kind of just grew from there. So we launched in 2009. And it's 13 years this year, since we launched and we only launch with one program and all volunteers and now my two co founders have left the organization they left quite a while ago to pursue other interests, and they're incredibly successful. And in now, we run eight different core support programs and have a team of 50 staff working with about six and a half 1000 kids per year, right around the country, which is pretty exciting.

That's bloody amazing. Like, I looked at obviously, I looked in the website, also stuff and I saw how many staff you have. And that was one of my question was how did you like just building a bit? Obviously, it's 30 years is a long time. But it's also a very short time, right? To do what you've done. And so how was how was those early days? Was it something where you wrote a business plan for this bit? Like has it evolved, like, especially in the early days, because it'd be a lot of people who want to do what you've done, but just don't know how to sort of maybe get started or do it? So do you recall those early days? And what did you do then?

Yeah, definitely. Um, it was all in my bedroom. So I had a two most

businesses that everything starts.

Right. So I think the first piece of office furniture I ever bought was a blue two drawer filing cabinet. Because I thought that, you know, professionals have filing cabinets, I had nothing to put in it. And now in our office now we have that blue two drawer filing cabinet. And still there are no files in it. I think we use it to store excess tech equipment. But everyone keeps wanting me to get rid of it. And I keep saying no, this blue two drawer filing cabinet will be with me until the day I die. But again, the early days, it was really tough. We we just kind of Googled everything. And we ran a lot of fundraising events. I remember printing off a huge amount of papers around how do you register an ABN and what isn't ABN and why do I need one? So I it was a lot of Googling and a lot of asking other people and we started with one program which was our dream experience program so a lot like starlight and make a wish. We gave young carers the opportunity to do something they've always wanted to do but never been able to organize or afford. And our very first dream experience was a overnight hotel stay in the city for to see Esther's and they got to go in a pink Hummer limousine, to the hotel and they had a big lunch at the hotel, and we've done overnight stays at the Melbourne Zoo and hot air balloon rides and and we did that for probably like four years or we did word dream experiences. And then we started to add in a young carers festival once a year. And then we added in a school holiday program. And then from there, our the numbers of young carers we were supporting started to grow, we started to look for actual funding. So all of our funding, right up until 2017, it all came from donations and fundraising events. And I remember sitting around the kitchen table one night with our board of directors, and asking them to borrow some money because we couldn't afford to pay our insurance for the year. So it was really, really tough. And we were all volunteers. And yeah, it wasn't until 2017, that we started to receive some recognition for what we were doing. And I received quite a big award, which came with a lot of media attention, which was beautiful, because then all of a sudden, we started getting some donations. We received our tax deductibility status, which we've been knocked back for a couple of times. So that was a process as well. And then received our first big government funding grant. And it wasn't that big, but it felt big for us in 2018, which allowed us to start employing staff. So I became a full time employee of the organization in 2017. And then employed our second staff member in 2018. By the end of 2018, we had five of us, and then by the beginning of 20, that was 12. And then, yeah, 2022. Halfway through, we've got 50 staff now. So it's grown really quickly. And it comes off the back of some really cool fee for service, things that we're doing with the federal government with their national carry gateway program. So that's allowed us to grow a little bit, but also it's been us being really innovative about where we're finding our funding and our fundraising events, and our relationship building with our donors as well.

Now, when what was your award, because it's a pretty big award, what do you say? Well, it was a gloss over that.

I received a queen's young ladies award. So the Queensland latest program was a four year program that Queen Elizabeth did in honor of her diamond jubilee. So I don't know if that's 70 years or something like that. And she did for years where she awarded scholarships and prizes to young people around the Commonwealth who were doing great things in their local community. So I was part of the 2017 Queen young Queens Young Leaders Program. There were three of us from Australia. And we got to do a course with Cambridge University by distance all around leading change. And then we were flown to London to do a 10 day residential program at Cambridge University and in London, meeting incredible entrepreneurs and learning from the best in the business. But also, we got to finish our program with going into Buckingham Palace, and we received an award medal from Queen Elizabeth herself. And then I was lucky enough to sit next to Prince Harry at the dinner after the award ceremony. So that was probably one of the best experiences of my life.

Because they said, Oh, I am using that little Oh, and a little.

Yeah, yeah. So that was separate. So I received my Order of Australia medal in 2019. So that that was, I think, off the back of a lot of the recognition that we're getting from the Queensland latest program, but also, I guess, Australia in recognition of the work that that I've been able to do with young carers. So that's pretty cool, because now I have three letters at the end, which makes me feel really fancy.

I think it's brilliant. I think it's fantastic. And honestly, it's, it's unbelievable. But what people don't realize is you've had to do that, let's say seven or eight years before you've even got a funding like I know talking from rose from satellite, she was 10 years before she got the funding from Victorian government based on the Royal Commission into mental health. So people don't realize how much of a passion and graft it's you know, it's not a startup where you might have to do high growth for two years and you start making money, seven or eight years or even 10 years and roses case where you have to every day like you just dedicated these self and just make you must make you feel so good, because you just don't know. You could go for another couple of years before anything happens. It's just must make you feel really proud that you know what you've been able to achieve.

Yeah, yeah, it definitely does. And I think it can be quite frustrating when you're in the thick of it. And you're kind of like I have 1000s of young people that I'm supporting every year. why don't why doesn't the government recognize that these young people need support. Why does it the community recognize it? So it can be quite frustrating? Yeah, when you're in the middle of it, but when you're when when you look back and kind of lift your head up out of the work, and you look back at how far you've come, it is something that I'm very, very proud of.

Well, how did you show your impact? Because this is a problem. I know, satellite? Well, they have to do to get with funding, right? How do you measure impact of your programs like because if you have a young person who comes in at the age of six, or whatever, and the way I sort of look at it, you know, sort of like, well, six year old who didn't have any support or intervention at always six year old go into your program? You know, what's the two sort of? What's the two sort of trying to imagine or project? What would their lives be like? Right? So how do you show the impact of the little dreamers programs and everything you do with the people to just to help with the government in regards to funding and things like that?

Yeah, great question. So we, we utilize an impact measurement and evaluation framework called the outcome star framework. So we do a star assessment called the my mind star at the beginning when a young kid joins our program. So there are seven questions or seven key themes that we ask them questions about, and they write it on a one to five, or a five point scale. And so we ask them all these questions that are beginning around their relationships, where they live, how they spend their time, all around trying to get a picture of their quality of life, I guess. So we do that we've the mind mind stuff. And then we also have a survey that we send them out. It's two parts. So one is called the Pennock, which stands for the positive and negative outcomes of caring which measures? What are you actually doing as part of your caring role? And how are you feeling about that? So how does providing care? What are the positive outcomes of providing care for you? And what are the negative? And do you see it more on the positive side of things? Or do you see it more on the negative side of things when it comes to the I guess, outcomes of your caring role, and then we also send through a survey called the maca, which is the multi dimensional assessment of caring activities, which basically puts young carers on a scale of how much care do you provide. And so those three tools together the my mind start the maca and the Panag, they give us a really beautiful, well rounded kind of assessment and look at where a young carer is when they come into our services. We then set goals with the young carers, so our family support workers will put together a support plan for our young carers, where they set a whole bunch of goals together and make sure that the young person is empowered when setting those goals, and it might be things like meet new people, it might be get a job, they can kind of range and it depends on how old the young person is when they come into our programs. And then we refer them into either our programs or into programs from other organizations that are best suited for that young person and what areas they want to work in. And then we do program specific evaluation. So young carers will do a survey at the end of programs, did they enjoy it? Did they not? What did they learn all of those normal questions. And then at a six month and 12 month mark, we redo the my mind, start the math and the pan off as well, again, to see if anything has changed. And so we the kind of those three tools give us an overview of how the young person is overall. And then we use individual programs, specific evaluations and surveys to see which then program is impacting that young person's quality of life in different ways, and we can kind of say, Okay, well, our dream experiences provide great short, short term support, acknowledgment, self confidence building, all that kind of stuff, our big dreamers program, which is a six month personal development program for 14 to 18 year old young carers, that really shifts things in terms of their mental health or their employability, or their resilience or sense of identity. So, all together, it's kind of a really complicated and complex framework, but it allows us to report to the government to our other donors about some really interesting insights as to how young carers are spending their time what their quality of life is like, and how little dreamers are you supporting that?

What are you finding out from it, then? What's the sort of things you've noticed? Obviously, it has a positive impact that maybe you want to talk about any maybe specific details or a little bit what what are some things that are interesting things? That's coming out of it?

Yeah, definitely. So I think that the most interesting thing we're seeing is around which of our programs are creating that long term sustainable shift in a young person? So we've seen an increase in engagement with education through our tutoring programs, and We've seen an increase in self perceived mental health. So we're not asking we're not doing, I guess, externally tracked mental health assessments we're doing How do you feel about your own mental health. So from a lot of our kind of young carers who are 14 to 25, we're seeing real significant shifts in their own self perceived mental health and their resilience and coping mechanisms. In our younger young carers, we're seeing incredible changes in their social isolation levels. So the fact that they're feeling more comfortable talking about their caring role, but also the fact that they know about more young people who are just like them. So I think that's it kind of changes as they grow up. And that matches with our programs get more kind of complex and longer as in terms of their engagement with different programs, is longer as they grow up as well. And we work with kids as young as four years old, right through to 25. And I have been very privileged over the last 13 years to be able to watch a lot of our young people grow up over that time. And there are these two siblings, two boys that we've been working with for six years now. And when they came to our organization, way back when, and joined as a school holiday program, they would barely speak, they wouldn't leave each other side. And now they are just two of the most inspirational young men that I am lucky to still have engaged in our organization. And I get to kind of sit on the sidelines and watch how much they've grown and how talkative they are now, and what their career paths might be, and all that kind of stuff. And I think that's really special.

Well, the stuff you do on under some couple of other organizations, but it's this, like, it's just such a massive impact. And on that person's life, you literally do change those young boy's life, right? If you didn't have some sort of involvement with you, and you know, yourself and even had that mentor. So what age did you have the mentor from the other organization?

I had Ng, I reckon I would have been eight until I was about 10 or 11. Maybe. And I mean, I'm 29. Now and I still remember that so clearly. And I mean, that's a massive testament to Angie and the impact that she had on my life. But I hope that our programs are creating the same opportunities for our young people, as Angie gave me. Well,

I just think it's so important to mention just the mentoring itself, because I'm 33. And we had nothing right. So that's what we're passionate about this subject and just hearing about all these things now know how much would have made a difference in my life. It's just like, wow, and how much it would have made a difference in other people's lives, you might be a bit older with 40 or 50. And hearing this sort of stuff. And, yeah, it's just it's just remarkable how much change and how much impact your programs can do in making just better people in society who might have gone off the rails a bit or not had the same sort of guidance in life that they need. But it's not that much stuff, as you said that mentorship you had in that eight to 10 year range, it still sits with you to this day. It's just even just having a mentor role is really important.

Yeah, yeah. And I often look at our programs and think, wow, if only I had access to something like this when I was younger, so I definitely I relate to that so much. And I'm so excited that now little dreamers can offer that mentoring program when organizations like candidate don't exist anymore, and we can make sure that that's still an opportunity for young people.

Let's talk about I should have I should stop at some of the stats around young carers. So there's a lot more adverse outcomes for the children in this scenario. So what some, some data or some stats or insights you can give around the problems that young carers face.

Yeah, definitely. So one in 10 young people grow up as a young carer. So that's roughly two to three kids in every single classroom across the country. These young people are up to 1.5 years behind in their schooling at a UI level through and that's measured through NAPLAN testing scores. They're less engaged with their schooling and employment than their peers. 60% of young carers aged 15 to 24 are not engaged in work, compared to 38% of non young carers. Two out of three young carers have a mental illness of their own, and 50% of young carers and their families live below the poverty line here in Australia. So that's a lot of a lot of different complex factors that all kind of roll into one very tough package for many young Australians.

It is not so you have a lot of you obviously cover kids who have got a parent with a mental illness or serious mental illness as well. What are some things that you notice about, let's say, kids who have a parent with a mental illness? What are some things from your perspective? that you see with them and the challenges they face or let's say maybe the unique characteristics they've developed from having to live in that scenario.

Yeah, so about a quarter of the kids that we work with, acknowledge that they have a parent with a mental illness. And that, and I use the word acknowledge carefully, because there are a lot of our families who have undiagnosed mental illness in them as well, and families who have come to us with saying, Okay, well, I care for my, I care for my brother who has autism, and that's what they've come to us with. But they haven't recognized or the parent hasn't recognized that they also have a mental health concern, and that the child is supporting as well. So out of these families, I guess there is still a lot of stigma, there is still a lot of young people not kind of talking about their caring role, because of fear of repercussions, we have had a lot of young people expressed to us that they don't talk about it because they are scared, they're going to be taken away from their family, especially if they're in a single parent family. And they are providing that primary level of care. And so there's lots of things that we do to work with these young people around. What does the child protection system look like? How does it work in? Like, how does that impact you and a lot of the time, it's just reassuring them that it's not a fear that they need to worry about with us, and they can talk freely. But obviously, we do have mandatory recordings in place and things like that. So it is a very complicated area. And I think the main thing we need to do as a community and that we try and do at little dreamers is really break down that stigma that is still associated with caring for someone with a mental illness and and allow them to allow the carers to get the support that they need and recognize that, that they need support as much as the person who they are providing care for does.

Yeah, it's a really a lot of great stuff. You said there because I know, I'm stuck in my experience with my mom at bipolar one. And she didn't really acknowledge her bipolar on, you know, if there was something like this evaluation would have let me go to it anyway. Because there's nothing wrong with it. Right? Yeah. So that's a lot of problems that a lot of kids face is that they have a parent who monitor acknowledge their illness, or as you said, the stigma of it, they're embarrassed by it. So if there's something like this that's available for their child, or the young person, they won't even let him do it, which is a big problem in itself.

Yeah, and we've done a lot of work in that space. So we've had a lot of parents write blog posts for us to talk about how they came to terms with recognizing that their child needs support. Because it is something that even my mom struggled with the with recognizing that I was doing things that other young people wouldn't be doing or aren't expected to be doing or are tasks that are usually associated with adults. So my mom often talks about it as well, in the sense that it wasn't something she thought she needed. And by recognizing that I needed extra support, she felt like a bit of a failure as a parent. And it's something I often tell her, she definitely wasn't a failure as a parent, but we've done a lot of work. And we often spend a lot of time talking with parents about recognizing that children are carers as well.

Yeah, and I think it's an important point, because it's something that is very, I would say, very common. And, yeah, the parent would think that, you know, I'm supposed to be looking after you yet, you know, you need to get this extra support. So what am I doing wrong? And presumably, it's a very probably natural thing, I guess.

Yeah, yeah, it is.

That's gonna gonna talk to you about I've got one question. So yes, I am prepared. But um, yes, I was gonna say the story of trying to find black people, it was. Okay, so we got our statistics. So with the, with the government itself, so you deal with the government and all this sort of stuff. So how did they look at the issue now as what they would have previously, because for me, if I'm looking at as like a government, I'm looking at arrival, we want all of our people to be productive members of society contributing good good families, all that sort of stuff. Whereas with young cares for us, like, you know, as we just talked about, for those two boys, right, you've probably helped two young men be really productive leaders or really big futures in society where they might not have had that. So is it something where government sort of understands that the stuff you're doing now that sort of early intervention or early intervention guidance can have a really long tail benefit to the community, not just in regards to just a good moral thing to do, but in regards to an economic benefit as well?

There's definitely a lot of work that still needs to be done from a government perspective. So and I think if we look at a state government level versus a federal government level, they're also very different and recognition and acknowledgement across states and territories is also very different. So from a Victorian government perspective, young care is a very highly recognized there's significant funding for young carers in the Victorian State Government. There's been lots of research about it. And a lot of kind of, yeah, acknowledgement of the need for early intervention. That is not the same in every other state and territory and a lot of other states and territories are that 20 years behind. In that sense from a federal government level. They have the national carrier gateway, which is a federal government initiative to provide standardized support for carers no matter where they live. It was It does include support for young carers, so little dreamers is a carry gateway provider across South Australia, Victoria, New South Wales and Queensland. But in saying that the system as a whole and the way it was designed was not designed with young carers in mind. So little Davis has done a lot of work. And we're very proud to be a carer gateway provider and be able to adapt the system for young carers to make it suited for them. But the way the actual initiative was designed at the beginning was not, did not include young carers did not take into account the nuances of being a young person providing care. So there's still a huge amount of work that needs to be done. But I think that I think that we're getting there. What I think we do need is cross department collaboration and cross department talking and you need the Department of Education to be speaking with the new lived experience team and you need them to be speaking with in Victoria, the Department of Families fairness and housing, like there's lots of different areas that young carers overlap in, we've got aged care, disability, mental health, education, youth, all of those areas cover some part of young carers, but young carers kind of sit across the spectrum. And so what really needs to happen is to have a parliamentary Standing Committee on young carers to bring all of that together.

It's quite, it's quite frustrating that some states have 20 to 30 years behind, because you would have a lot of these politicians or people who making policy would have had this situation right, they would have been had a parent with a mental illness. I know Greg Hunt had a mother with bipolar and disorders that came out of that a couple of years ago, but there's a lot of people who can actually make good decisions, who would have grown up in this scenario. So is it is it something where it's just a funding issue? Or is it just there's other political, let's say, more important things to get political wins on the board? Or why do you think that's the case?

It's a really good question. And I think it's because I think it's a mixture. I think it's because things like the census data that often drives a lot of funding decisions for the federal government. The census data does not pick up on the sheer number of young carers that there are in Australia. So the census, as you probably know, you only answer it for the care question. In particular, it's only for people over the age of 15. Already, you're missing out on a huge chunk of kids providing care. But it's also the question is, in the last two weeks, did you provide unpaid care or assistance to someone in your family because of x, y, and Zed and lack with mental health, like with mental illness, like with chronic illness? Within those last two weeks, you might not have had to provide a huge amount of care? Because it does. It is kind of a fluctuating caring role, and no two days are ever the same. But also the way the question is worded often doesn't pick up on the sheer number of young people providing care. So I think there is a mixture of not enough funding, but I think because there's not enough data to back up and we have research reports, which say one in 10, but because that's not the report that the government bases, a lot of our funding decisions on it. It's a little bit redundant. So I think yeah, I think it's a mixture of lack of recognition. I think it's a lack of acknowledgement. I think it's a bit of politicians who grew up as young carers might not call themselves a young carer. So Anthony Albanese, for example, grew up caring for his mum. He has never acknowledged that he was a young carer, he acknowledged that he was a carer he acknowledged that around Mother's Day, it's really difficult because that's when his mum went into hospital and never came out. Again. There's a lot of different things there. But they haven't used the term young carer and that comes down to an education piece. So I think it's a mixture of lack of funding, lack of awareness and lack of education.

Yeah, also, because as you said, a lot of young carers don't even think of themselves as young carers. So, for example, what they're doing is just normal part of the day, they're not going to go and tick a box to me, you know, that's because I don't think that's what they do as well. So you're never going to get an accurate representation of the data out there. So how can that information then get to the people who then need to make the decisions? Is it something that your organization works on or As a sort of getting that what you've just said, then how can you get that into the, into the minds of the people who are making these decisions.

In 2021, we launched the Young care advocacy project. So we played chicken between nationwide lockdowns and flew around the country and did a series of focus groups in every state and territory and ran some online and had online surveys as well to collect the ideas, feedback, information from young people providing care about what they currently spend their time doing. What do they want more of? What do they want less of what is the Australian government or state based government spending their money on that? Is it exactly what young carers want or need. And then we together with 16 Young care ambassadors from around the country, we put together a recommendations report that we've been talking with government around. So there are four key recommendations within that report around education, research, funding, and program delivery, and recognition and things like that. So we're hoping that with the federal election, we're hoping that after that no matter which party wins or loses, we're hoping that we'll be able to start getting a little bit more funding and recognition for young carers. But on a state based level, it's very much around going to talk with your local politician, we have great relationships with lots of politicians. So talking a lot about young carers, basically to anyone who will listen and asking them to think about young carers in political debates that come up that might include or effect or, or have a young carer involved in them.

My frustration with the politicians just there's a lot of them, we just know, statistically, we'll have these stories, but they just don't willing to share them. And I just don't know, to the level of what they need to know. That's their, that's their prerogative, because that's their lived experience. And that's their story to tell. But you just love someone like, you know, Greg Hunt, who did share his story once but you know, come on, mate, you're the federal health mess, you're in a position, you can really do something for your legacy, right? As the champion of that sort of thing.

Yeah, I think it's around that stigma, though. And I think that it's, it's a lot of people, adults, young people still feel like there's quite a bit of stigma attached to saying that you're a young carer and whatever that might be. So I think that the first thing we need to do is really break down that stigma. And whether that's through a really funky nationwide awareness campaign, or whether it's through word of mouth, or a mixture of all of the above, I think that the first thing we need to do is really start to break down the stigma and make it okay to talk about it. And more people like you talking about your experiences. And people like Greg Hunt, talking about his that will only help on that journey as well.

So my next question to you was about the awareness sort of thing. So what you just mentioned a couple of things there for what for awareness point of view can yourself or can say people who have had lived experience or young carers and may be in a position now a bit older? Or to do something? What sort of what would you advise them,

talk about it, talk about your experience all the time, write articles, and link your experience with topical things that are going on in the community. So if it's a new piece of legislation, if it's a new piece of research that's coming out that you've read about in in the paper, if it's a story on the project, or on a current affair that you can relate to, because it's very similar to your experience, write about it. Literally, send it into online magazines, talk to radio shows, I what we often do is we have the radio on in the office or at home. And if we hear about a carer related story on the radio, we'll pick up the phone and call them and say, Hey, have you heard about little dreamers? This is what we do. And, and so I think it's a little little things that add up to big things along the way. And the more times you share your story, the more time anyone listening shares their story, the more other people will go, Oh, hold on. That story is actually kind of like my story. And then there'll be like, Oh, well, hold on. Maybe I can get support or maybe sharing my story is important. So I think it kind of is like a snowball and ripple effect. But it's literally just sharing, sharing your story encourages other people to share their story encourages other people to share their story. And the more people who talk, the more people will realize how common it is.

1% agree. Now just want to talk real quickly about identification. So for me, you mentioned about all these different departments and you're the school as well, that sort of thing and there's all these different people involved. But where does the identification for you really started this at the school who has probably the best chance of because I know the kids maybe the best and then they it's up to the teachers or the coordinator about cool. This kid's got this situation where there'd be a parent that meant Almost little bit apparently. So another condition and I can refer is in the West for them to then mobile, I can go here I can refer him here or, well how's that sort of work from your perspective,

I think identification can happen in in lots of different spaces. So if the world was perfect, and if everything works the way it was meant to work, identification of a young carer would happen at diagnosis or birth of the relevant person in the family. So if a GP diagnosis a someone with a mental illness, or if a child ends up in hospital, and he's diagnosed with in capsulitis, like my brother or whatever it might be the social worker, doctor, GP, whatever it might be, would at the same time as handing my parents a flyer, all about epilepsy in the Epilepsy Foundation. And they would also hand my parents a flyer about young carers, and they would add diagnosis, early intervention, prevention support would happen right there. The same is happening at school. So we've been working really hard with the Department of Education over the last couple of years. And now, in Victoria, there is a tick box on public school enrollment forms to say, Do you have a carrying role in your family? Yes or no? And what should be happening, which isn't happening, but what should be happening then is that schools when they get that enrollment form, should automatically flag Okay, well, Maddie is a young carer, I'm going to link her in with well being and well being will be able to link her in with the relevant services. So from day dot, everyone who needs to know should know, that doesn't always happen. But I think those are kind of the three key points at which people should be identified. It's not happening in practice, in practice, it is very much. If someone if the right person hears it, they'll be able to recognize it. So if if the right robic wellbeing coordinator who has read an article about a carer or grew up as a carer, or who knows about satellite, or knows about little dreamers hears about, here's this young person's story. They're like, Oh, light bulb, I'm gonna refer them on to the relevant organization. But then it's about you've got the right person at the right time. Not the system is right. Yeah. I

just don't understand. Like when you say it sounds so logical, right? Why can't it be done? Like, you think it'd be a very, I don't know, how it would be implemented that logically like assessments, not a not really an overly hard thing, right? Well, these kids this situation, okay, cool. Let's doesn't matter if, if you've had experience or not, that should be the process, that should be the system. And the hospital thing makes absolute sense, right? Because, you know, you can predict what's going to happen next. Right. So as soon as that's done, what's the harm and just all right, marking this family or permanent database, or whatever it is, so at least they're logged in the system, and that, you know, whatever, whatever supports in place, at least knows that identification for me, from what I look is a big problem, right? Because families want to talk about it. There's a lot of stigma with it, all that sort of thing. But, you know, we just makes life so much easier. If these families are these these kids could at least be just have a database or something from, as you said, from right from the start just makes, it just seems like it's a common sense thing.

Yeah. And I mean, you think about it, that any child who's diagnosed with something new, is often referred to that specialist organization. So every time a child goes through an assessment and is diagnosed on the autism spectrum, they're referred to amaze or they're referred to a relevant organization, because that's just the way the system works. So I don't know why they can't then automatically identify that that person is a young carer as well.

Well, how do you get that message to him? Is it something where you're where you're with this group stuff you're doing and you're going in? You're talking to people? Is this part of what you're talking about? Or?

Yeah, it's all about training. So we go into universities and train new students, occupational therapy students, med students, social workers, on identifying and knowing what a young carer is. We also partner with hospitals, so we partner with Monash children's, to ensure that their social workers know when there's the Monash children's school as well. And we work with them. So there's lots of different kind of areas as lots of different areas around around that kind of stuff as well. So it's kind of it that's kind of where we're going, but it's all about training.

Yeah, that's also volume that unfortunately, got a heat so many people with that sort of training. And I know psychiatrists to me be the big one. I'm sort of sorry, I'm a big I'm going through the system itself, the psychiatrists to me, and a lot of others, people that I know had no regard for the children or carers at all in the whole thing. I know that's still probably happens too much about what happens now. But from what I talk about with people from younger people, it's still something where they're an afterthought, in that whole process.

Yeah, I mean, I think back to when my mom was diagnosed, I asked to come with to the doctor because my mom was going to be going through all These treatments and losing her hair and going through all these different kinds of surgeries and things like that. And I wanted to know how I was meant to take care of her. And they were just talking to my dad, or to my mom directly. And I was a young person, I was a teenager in the household, I was going to be involved with it. And so I asked mom, if I could go with to the doctor so that they could answer all my questions for me. And so I want more of that I want more of, of young people being included in support planning, because they're the ones doing the support and providing it anyway. So just include them in those conversations to begin with.

Why does it matter? And I think it makes a massive impact, because you will remember that you remember that disregard or that you know, lack of involvement from the doctor deliberately, this sort of skews your opinion enough, doctors move forward on Earth, and maybe psychiatrists and psychologists that ever include myself and I've got a real, I still got a real bad taste in my mouth from it, because all they had to do was sit me in a room with whoever was the garden at the time or whatever. Well, the relation is sort of just talked to us both. And even if I couldn't have said anything, or just listened, it would have just been a lot. They felt like you're a part of the treatment, when you're the one who's affected the most by the outcomes of the treatment with your with your parent, right and have yourself go through a similar thing. I think it must be very common. But to your knowledge, is that still, is it still the case where you know, young carers and stuff aren't acknowledged even by the doctor or?

Yeah, very much so. And I think it depends on how old they are. I think that for our younger young carers, even if they are the primary care in the household, they're not included. And it needs to be it's very much a doctor by Doctor situation, it's not a this is the the whole thing is kind of understood, it's very much of if you get a great doctor, if you get a great surgeon or a great specialist, then they will include you but it's not a system wide thing just yet. So we'll see how we go.

Yeah, I just think they don't not knowing understands the holistic thing. Right. So you're what you're doing is going to affect the young young carers of why aren't you just at least having him in the same room? Does that have to say anything? Right, just making him feel as though they're involved? Or acknowledged? I think goes a long way. Yeah, yeah, exactly. So yeah. So what's next for your organization? Little dreamers? It's very impressive what you've done, as I said at the start, like it's just so many people would love to be have done what you've done. But you've put in that really hard yards for, let's say, eight years before you got that funding and that commitment. So So what's next for your organization? Where do you see it going?

Oh, so many things. I think what's next for us is refining the services that we offer, making sure that we provide a really high quality service that improves the quality of life of young people providing care. I also want to shift the dial a little bit on government recognition on funding on systems, I'm really passionate around that identification piece. So working really closely in that space as to how do we make everyone know about young carers, I would love to walk into a room one day and say, Oh, I work with young carers, and everyone just know exactly what that means. And nobody asked me also. So what is a young carer and what do they do? And oh, I don't think I know anyone who's young carer, I kind of just I want those questions to not exist anymore in our vocabulary. So that's what I'm working towards. And that as a team, that's what we're working towards. And also just meeting the demand we've had, the demand for our services has increased by 370% over the last two years, so just kind of trying to meet that demand and continue to be able to support every young carer who needs it around the country,

as a referral process for people to come and be involved, or is it something how to how do you how do people learn more? Or how do I get involved?

Definitely. So head to our website, little dreamers.org.au. And there is an apply for support button on our website, you can apply as an individual, or you can get referred through from a doctor, teacher, psychologist, social worker, if you refer yourself through, you just need to upload a document that confirms the diagnosis in your families, or a letter from a doctor, if you are referred to from a professional, like a teacher, a social worker, or psychologist, all of that kinds of they don't need to submit a letter. So that's the only difference but our apply for support is on our website.

Thank you very much nice. So I'll put the links in the show notes there. You're very busy person. Thanks for giving me an hour of your time. It's also what you're doing. Like as I said, it's just massive amount of respect for someone who sees a gap in the market, but most of the time it's for making profit for themselves. Right. Whereas you've done it, you saw a gap in the market to try and help other people achieve and to not maybe to have that support, which you didn't have right. It's a really admirable and amazing thing that you've done and how Roughly, where you get a lot more awareness and a lot more support from funding wise, moving forward. But I think it's absolutely brilliant, what you've done. Thank you very much for your time money. So I really appreciate it.

Thank you so much for having me, it's been, it's been a great chat, and I can't wait to listen to it. So there you have

it, Maddie, from little dreamers there, thank you very much to Maddie for her time, she's extremely busy with running a massive organization like that. And it's just, it's just remarkable to see how someone from such an early age can have that sort of mentality, sort of want to fix things and give back and help and, and to sort of, you know, put all that effort into an organization like that for really, maybe for so many years to not feel like you're getting anywhere, but you having those little wins along the way and to finally get that recognition and the accolades. It's really well deserved and similar to rose from satellite foundation, you know, they've done all these organizations for years and they could have done plenty other things and they wanted to give back and help and I look where they are and it's people think oh, you know, it's just start a charity or start an organization Away you go, as you heard from Maddy story, and if you check out roses as well, you know, this is many, many years of doing this sort of thing. And you know, just just getting by and, but what a rewarding thing to do to actually help people in their lives and in their journeys and actually have a significant impact. There's not many people are gonna say that. So big thank you to Maddie for for her for doing, what she's done, and for sharing her story and journey, and please, if you can donate or want to get involved or see what they do, please check out the links in my bio. And if you made it to the end of the podcast, I really thank you please make sure you leave a review as well. And that helps and hopefully, work won't be so full on and I can get some more podcast episodes out. So until next time, I hope you have a really great week.