Changing Australia: Madeleine Buchner and caring for the young carers

0:00What's time now for changing Australia? And the word carer might evoke a professional at home or an elderly person taking care of a spouse. But thousands of carers across the country are much, much younger than you think. Some, as even as young as four years old. Madeleine Buckner was a child when she was first thrust into a caring role, first for her baby brother and later for her mum and grandmother. By the age of 16, Madeleine was still in high school. She founded an organization called Little Dreamers, a group to support young carers. And I'm very pleased to say that Madeleine Buckner is my guest this morning on Changing Australia. And Madeleine, welcome to you. Thank you so much, Sally. I'm so excited to be here. We're delighted to have you. Madeleine, you were only nine when you had to start thinking about some of the support that carers might need. What was happening for you when you were nine?

1:00When I was nine, I had been already providing care for my little brother for a very long time. My brother is two and a half years younger than me. And he grew up in and out of hospital a lot. So I grew up then basically living in hospital wards and nurses and doctors were my best friends. And I knew how to make sure that the best TV was in my brother's room for a little bit longer than it was meant to. I, at that point, realized that kids who are growing up with a very sick brother or sister are often quite lonely and I was definitely feeling that myself. And so started fundraising for other organizations to run sibling support programs for them. And yeah, realized that that was something that started giving me my own identity outside of being my brother's big sister, which was something really nice for me. I wonder if you can kind of explain to me some of the complexities of that role at a young age because at a certain age, a certain age is kids want all the attention

2:01and focus on themselves. As they grow older, that changes, it goes backwards, it goes forwards. How was it for you when a lot of the focus was on your brother? You had this caring role. Did you push back sometimes? Oh, definitely. I used to act out quite a bit. I told really big lies that I thought were getting me some attention. I really didn't know how to deal with my own emotions. So I slammed a lot of doors. I ran away from home quite often. It was, there was a lot in it that I didn't know how to deal with what I was feeling because my brother was so unwell and all of the attention rightly so was on him. And because of that, I felt like nobody really cared about me. And I think you're right in saying that at a very young age, you're meant to be the center of your whole universe. And it kind of felt like I wasn't and I didn't really understand what that meant or why that was the case at the time. And so my days pouring out my brother's medicine

3:03and monitoring his seizures and helping pack hospital bags looked very different to my friends. And there was no service or support that helped me to understand why that was the case. It sounds like it is a complex mix of, this sense of duty that you had. There can be times of jealousy for kids who are in this role not being able to articulate what this mixture feels like and seeing your friends having a very, very different childhood medley. Yeah, definitely. I mean, my brother was lucky enough to get a starlight experience when he was younger. And we got to go and swim with the dolphins up in WA. And it should have been the most incredible experience. And I was just a moody teenager the whole time because I was so jealous that once again, all of the attention was all on him. And there was no one really around me going, oh, here's something that you need. Or these emotions you're feeling make sense. And I love my brother. And I loved providing care for him

4:04and supporting my parents in doing that. But there was definitely moments where I was super jealous of him. And definitely times when I was in primary school where I used to pretend that I was sick because that's how I thought you got attention. The school nurse and me were very close. That's really interesting. I was going to ask you about that whether sometimes you wished that that was you who was getting all the attention. And sort of from what you're saying, it sounds like as a kid, it was like, well, that's the way it happens. That's the way you could get that attention. 100%. And I think that's why when I started what was originally the Kennet Kids Club and his now little dreamers, I realized that there was a healthy outlet for me to figure out who I was outside of the caring role that I was providing at home. And where I was able to figure out what my identity looks like. But so many kids and young people who are growing up providing care, especially from a really young age, don't have the opportunity to figure out what they want and who they are outside of that.

5:06And it's really tricky when we don't have the opportunities for that. And as a kid yourself, you're a moving target. Have you spoken with others who've cared at a young age? Does it sometimes put things like adolescence on hold and does that burst out later? What does it do for the timeline and the development of the kid who's doing the caring? Often we see young people who are care is growing up much faster than they should have to. So they're taking on significant adult responsibilities like managing household finances or medication or communicating with doctors or advocating in health services at a very, very young age. And often what that means is that they might not have as great social connections. They might really struggle with making friends. They might struggle with engagement and education and with attending school. 50% of young carers don't attend school regularly and miss school every week. So there's a whole bunch of different long-term effects

6:07that happen when you take on a caring role from a young age. And we know what those impacts are when you take on a caring role as an adult. We know that you might lose your job or not be able to hold a job and there are changes to your superannuation balance. But when you take on that caring role from a much younger age, your long-term trajectory is so much greater and the potential for really challenging outcomes of being a career have so much longer to happen, I guess. What do the figures tell us when we're talking about reduced attendants at school for many young carers? What does it mean a bit later on for employment for young people who are in this caring role and maybe can't get out and pursue some of that? Yeah, so only 4% of primary young carers, so if they're the main care in their family, only 4% finish high school in Australia. When? 4%? 4% the number is so low. And we also know that 50% of young carers in their families live below the poverty line here in Australia.

7:08We know that when you get older, there are significant gaps of $50 to $100,000 in your superannuation balance. We know that two out of three young carers have a mental illness of their own. There's much higher rates of unemployment and all of those things kind of lead on to one another, I guess. When can young people start accessing things like carers allowance? Oh, good question. It's technically from any age, but most of the time, they don't get it until they're over 18. And it's really hard to prove that you need a carer's payment or a centric payment or carer's allowance when you're under 18. The carer's payment in particular, you need to be working or studying or volunteering less than 100 hours per month. So the carer's payment is higher than the carer's allowance, and it means that if you're enrolled in full-time school, you're not actually eligible for the carer's payment. And the carer's allowance is significantly less,

8:09but equally very hard for young people to get access to. You're listening to Changing Australia on Radio National Breakfast. I guess this morning is Madeleine Buckner, who's looking and working to try to provide more support for young carers. As I mentioned in the introduction, Madeleine, some of the carers are as young as four years of age. Can you give a sense of what that looks like when a kid is four, and they already have some of these caring roles? We work with a number of four-year-olds who are providing care for a parent who has a mental illness, and their caring role might include making sure that their parent has water that they're getting out of bed every day, that they're doing things around the house. We also have four-year-olds who are supporting a sibling who might have an intellectual disability, and their caring role might be helping with patterning or helping with physiotexercises at home, because that's what they see their parents doing. We also have four-year-olds who are providing emotional support in their home,

9:09which is at a level that you wouldn't really expect a four-year-old to be conscious of, I guess. The fact that kids so young are having to take on some of these caring roles is this part of family life and life, or does this indicate a failing in supports that could or should take on these kinds of roles and responsibilities? I think no matter what support we have in the community, there are always going to be young people taking on caring roles in their home. I don't think we're ever going to get to a point where that's not something that happens. However, I do think the level of care that young people are providing, I think that the amount of young people there are and I think the lack of systemic support for our young people is a failing, but we also know that a certain level of care in the home is very natural and very normal. And so it's called the continuum of care and it splits out hours per week

10:11that a young person provides and what's considered normal in a family life and what is considered excessive or additional. And so there is a spectrum and you can measure young people against that. You received a Churchill fellowship and you traveled to the UK as part of that. You had a look at what was happening with Manchester City Council, what were they doing and how effective was it? There's a really interesting model in the UK where most local councils have young care programs and are required to have a young care support service. Manchester City Council at the time when they launched was their young care service was very controversial but what they did was instead of running their own young care service, they trained everyone within their local community to identify and support young careers in their own way. So teachers, healthcare workers, hospitals, social workers, community services, it's this idea of mainstreaming young care support.

11:11So how do we make sure that young careers are not required to self-identify and are not required to go to a specialist service to get support but can actually get support irrespective of what system they engage with and the results of that have been phenomenal. They've been much greater than anyone expected. The rates of identification of young careers in schools is very high compared to other areas in the UK. The rates of young care health service usage is lower. There are better mental healthcare outcomes, there are school completion rates and it's really interesting. This concept of mainstreaming is one that I'm really passionate about getting happening in Australia but getting other sectors and other areas to care about young careers is much harder than I ever expected. Mm. Well Madeline, it's so important to talk about this issue because it often kind of goes unseen but it's a huge role that young people are playing in their families and communities. Thank you very much for talking to me

12:13this morning on Changing Australia. Thank you so much for having me and for talking about young careers on this platform, it's really important. It's Madeline, their founder of NCEO of an organisation called Little Dreamers and as you were hearing earlier, Madeline's had her own experience as a young career for a number of her family members and now set up this organisation and undertaken a church or fellowship to look at what's happening in the UK.