RECORDED Tue 30 Sep 2025
SUMMARY KEYWORDS: Young carers, health and education, carer recognition, emotional load, financial distress, school support, mental health, caring responsibilities, educational inequity, peer support, Carers Australia, Carer Gateway, National Carers Week, young carers bursary, flexible learning plans.
SPEAKERS: Annabel Reid, Megan Gilmour
Megan Gilmour 00:00
This episode is proudly brought to you by the TPG Telecom Foundation dedicated to creating opportunities to improve the health, wellbeing and education of Australian communities in need.
Hi, I’m Megan Gilmour, MissingSchool, Co-founder and CEO, and this is Live & Learn. This is the podcast that unearths insights at the intersection of health and education, building a powerful alliance to keep kids with complex health conditions connected to school from anywhere. The podcast is recorded on Ngunnawal land, and we acknowledge and pay respect to the traditional owners of this land and the land on which you’re listening.
Welcome to our weekly webcast, a place to zero in on the interplay between health and education and to amplify the voices of those supporting school students to navigate their educational journeys despite complex issues.
And today on Live & Learn we have Annabelle Reid with us. Annabelle joined Carers Australia in March 2024 bringing over a decade of executive experience in the healthcare sector, including senior roles with the Pharmaceutical Society of Australia and the Australian Medical Association.
She serves on national advisory committees advocating for the recognition and value of carers with lived experience. As a carer herself, Annabelle is passionate about supporting people who help others and being an impactful voice for Australia’s 3 million carers. Welcome, Annabelle, we’re so excited to have you on Live & Learn.
Annabel Reid 01:41
Thank you, Megan. It’s a pleasure to join you today.
Megan Gilmour 01:43
So today, we’re here to talk about supporting school connections for students with complex issues in their life. Let’s head straight into my first question.
Annabelle, tell us how caring impacts kids and why it’s something every Australian needs to know and care about.
Annabel Reid 02:07
Thank you. Well, firstly, maybe it’s good to talk about who a carer is. So when we use the word carer, we’re using it actually per the Carer Recognition Act, a piece of federal legislation, and that means somebody who takes care of a family member or a friend because they live with disability, a chronic illness, including life limiting illnesses, because they live with mental ill health, including alcohol or substance abuse, or because they’re frail and aged.
So, kids who are carers and young carers, and by that we mean a carer aged under 25, they’re people who are likely juggling caring responsibilities with education, social lives, growing up and also, you know, managing that significant caring responsibility in their life too.
Sadly, young carers are often unseen and they’re overlooked, and they usually don’t get the support that they need.
Megan Gilmour 03:05
Wow, what an opening, and the first thing that hit me was, there’s legislation for this? And obviously, there are a whole range of people who are in caring roles and have caring responsibilities that go beyond what most people would consider caring.
And we’re so looking forward to having this conversation with you. It’s such an important one for everyone to know about, especially as you identified young people who may not be seen.
So, many people probably assume things about young carers. What’s the million-dollar question you get from people around these young people when they’re taking on this caring role.
Annabel Reid 03:56
Thank you, and great point. There are a lot of assumptions made about what a typical carer looks like. Perhaps there’s no such thing as a typical carer, but I think, I think what we see is probably not a magical question about young carers. They remain fairly hidden.
I think a lot of assumptions are that family and friend carers are usually women. They’re usually middle aged, and to a large extent, that does represent the average carer, if you like.
But there are a lot of young carers in Australia, and what probably surprises people is how significant their caring duties can be. For example, we spoke to a young man a little while ago, and he was resuscitating his sister daily.
So, the caring duties can be really quite difficult to do, but also difficult to manage emotionally as well, they’re making a significant difference in one or multiple people’s lives.
Often, young carers are caring for a sibling or a parent or even grandparents if they’re living in the same house, and this could be quite tough. I mean, if you imagine caring for a parent who might be experiencing mental illness, it can be really isolating, as other people don’t understand what you’re going through.
And certainly, school friends, you know, maybe senior school, or even primary school, that they might not get what’s happening, and you just have a parent who might be absent, if you have got a school activity or something like that, and they don’t realise what’s going on at home.
Young carers also can often have lowered results at school, including numeracy and literacy, and there’s some really good Australian Institute of Family Studies evidence to show that they’re not getting the same deal as their peers who don’t do caring and that’s for a few reasons.
I mean, first and foremost, they might have really large caring responsibility at home, there’s no time for homework or to do the reading ahead of the school day, and also at school, they might be a bit distracted and give the appearance of a naughty kid.
They might be late for class. They’re not well prepared. They might be in yesterday’s clothes because there wasn’t time to change or wash them, and they might be looking at the phone a lot, not because they’re texting their mates. They could be waiting for an emergency at home, because it happens so often, they’re on high alert.
So, they’ll probably appear a little distracted, a little isolated, and they might not even be socialising. You know, in the break during education, though, they’re probably using that break to try and desperately catch up with schoolwork. So, they’re often treated like a naughty kid, but really they’re a kid with just bigger responsibilities.
Megan Gilmour 06:36
Yes, and I imagine that you know that I think that million-dollar question is, you know, how do we recognise them? Because some, maybe I’m jumping the gun here on some of your responses, but they might not even realise that this is unusual, or because that’s all they’ve known.
And so, a question that kind of strikes me out of that is, what’s the definition, then, of a carer? How do we know that you’re sitting outside the normal care that we give people that we care about or live with?
Annabel Reid 07:20
Yes. So that legislation, the Carer Recognition Act, that’s Commonwealth legislation of 2010, that is the definition of really how we formally recognise the carer. But it’s a difficult word, you’ve read off a great point about people not realising that’s what they’re doing.
So, a good way of helping someone identify as a carer is to talk about the acts of caring, rather than say you’re a carer, because most people don’t think that way. And young carers think I’m a daughter or I’m a brother or something like that. They think about the relationship they have with the person they care for. They might, as you said, they might not even know what they’re doing is different to other families.
So, it really is that definition when you’re caring for someone because of illness, disability, mental ill health, or because they’re frail and aged, and that’s different to parenting, in a way, although there are parents who might also be carers.
But, you know, we use that word in a funny way. We often use carers to talk about paid support workers, so we’re thinking somebody who does it for a career. Or we talk about parents and carers. Schools often send out communications about parents and carers, and they mean people who are parents, who are doing parenting, but aren’t a parent, and that’s not what we’re talking about.
We’re not talking about caregiving as parenting. We’re talking about another set of skills, which is working with somebody who has basically a health concern or needs support for the reasons I mentioned before.
Megan Gilmour 08:47
Yes, skills and responsibilities. So, on the back of that million-dollar question about what does this mean for young people, what’s the most important thing that you want families, I guess, to know about these young carers?
Annabel Reid 09:08
Well, I think, I hope families and schools know these things, because I think often the family knows what’s going on. I guess it’s recognition. And sometimes, look, there’s not much choice often, when you become a carer, if somebody needs support, you know, it’s not like people wake up one day and say, ‘Oh, I hope a family member has a really difficult chronic illness that they need my help with’.
I mean, it’s not a choice people make. It’s something that happens, and carers are the people who step in to support. And certainly, young carers often have no choice around that, and it doesn’t mean they’re not happy to do it. Many young carers are extremely proud of how they contribute and change a life in a meaningful way. They’re doing something really important.
But I think we do need to recognise the impact that has on other aspects of the young carer’s life. So, you know, being a family that cares often means the family is more likely to be in financial distress.
So, we run an annual survey called the Carer Wellbeing Survey, and we’ll be releasing the results in Carers Week between 12th and 18th October, and this year we had almost 11,000 responses so it’s a really big data set.
And it shows that carers are three times as likely as other Australians to be poor or very poor, and that’s because caring might mean in a household, one or more parents may need to drop out of work or go to part-time to do those caring responsibilities, which means less income for the households, but also there are often bigger costs associated with caring, like patient transport or medicines and things like that.
So, there’s less money, there’s more expense, and there might be support services and things that families paying for, which means that usually the finances are tougher, and so a young carer, but also the whole family is dealing with a tougher financial circumstance.
So, we often see young carers missing out. There’s not enough money for school uniforms for them to play sport. They don’t have a laptop that they need for school or university or TAFE. So, you know, they’re often struggling with just some of the basics other people take for granted.
Megan Gilmour 11:18
It’s multi-dimensional, isn’t it? And even if we understood or knew that there were people in these circumstances, and we’re talking about young people in particular, we might not understand all of that granularity of experience.
And I wondered, when you were talking about it, whether young people – part of their caring roles is also paid work?
Annabel Reid 11:44
Well, yes, so yes, a lot of younger people are trying to incorporate work into that juggle, but it becomes really hard. And I want you to think back to that first job you had while you’re at school. You know, maybe it was a McDonald’s at Maccas or something like that. It’s usually a frontline job that requires you to physically be present.
So, it’s not like an office job where you can work remotely or flexibly. You’re probably needed on a location. It’ll be in retail or hospitality most of the time. And then there’ll be a roster that comes out a week in advance.
If you’re caring for someone and booking in specialist appointments, and we see young carers doing this, you know, managing medical appointments, getting people there. They might be also juggling some parenting of younger siblings, dropping them at school, helping them with homework, doing some cooking and cleaning.
It’s really hard to A) fit in a job at all, but B) the young carers need a little bit of advanced notice around the timing, and that’s often not the case in those sorts of retail and hospitality sectors, first job entry points.
So yes, young carers probably struggling with the juggle. It’s hard and what they need is some recognition and additional support and flexibility to be able to manage those other aspects of their life that really changed their career trajectory over time.
Megan Gilmour 13:04
Yes, such important points, and I heard there too that being involved in that administration, that young people might not have to do until much later in their young adulthood, perhaps, where they’re being brought into NDIS complexities and
Annabel Reid 13:27
My Aged Care,
Megan Gilmour 13:28
yes, the whole thing, yes, incredble. It gives me so much more understanding and empathy for what’s going on here and just how much it is and how much is involved.
Annabel Reid 13:44
Yes, that’s right. But they are building skills too. So, it’s incredible. Often we overlook, you know, there was a young carer sort of consultation activity we did, and there was a 12-year-old who navigated the NDIS and was negotiating adjustments to the house for her grandmother who needed support and at the same time she was also caring for her mother.
And I was like, I couldn’t do that at 12, this was such a capable young person, really inspiring. She was all over it. And there are those of us that are, I don’t know, I’ve got a Masters, and I find that navigation hard, so well done her!
Megan Gilmour 14:18
Absolutely. Yes, maybe they don’t have the same expectations of things that we do, and so they just do the next step or something. I don’t know. But yes, it also kind of plays into the whole notion of what is childhood as well, doesn’t it?
It raises some real questions around that topic and how that’s evolved historically as well, that comes to mind for me, but that’s a much, much broader topic than we’re on now.
So, if you will, we’d love to know what brought you into the world of Carers Australia, if you’re willing to share with us,
Annabel Reid 14:59
Yes. Well, look, I’m a carer myself. And I think I hadn’t realised that I was a carer. And, you know, I applied for this, this job at Carers Australia, as you do. It appealed to me on a lot of levels, but I just found it incredible that there are 3 million carers in Australia.
There are almost 400,000 young carers in Australia, and many of them won’t even know they’re a carer. And that in itself is a problem, not because the label is so important, but when you don’t realise you’re a carer, you don’t connect with all the supports and help that’s out there, and it usually means carers wait till they’re in crisis before they start looking at things like respite or counseling or peer support.
And it can be a really isolating job. You think no one understands what you’re doing because it’s so different and unexpected. You don’t practice to be a carer. It’s something that happens, and you navigate as best you can.
And certainly, you know, like I said, I’m a grown up, I have a Master’s. I find the navigation hard. So really, I’ve turned my mind to the carer who can be anyone at all and can almost be any age. So, I thought, Oh, wow. How do other people cope. And you know, why aren’t we talking about this more? And with an aging population, we’re going to need more carers, but they’re hidden. They’re like a hidden workforce.
So, I think I really felt inspired by the opportunity to help spread the message about carers, and first of all, just help with that recognition, so that people realise there are people doing caring. If you’re not doing it, you don’t, you don’t think about it.
But also, you know, in schools, I don’t think young carers are recognised. They probably look like naughty kids. There are some schools doing an amazing job, and other schools and education institutions that just don’t know that that young person who seems to be the naughty kid’s actually juggling an intensive responsibility.
And they probably haven’t told anyone about it because they’re afraid. They’re afraid something will happen, or they’ll be taken away from their family, like that. You know, there’s a bit of fear around talking around it, or they’re worried they’re not doing the right thing.
So, some people are quietly, silently, carrying an emotional load and a cognitive load, and it’s big, it can be huge and overwhelming. But they’re the people stepping in to do the right thing and support other humans. So, I feel they deserve our attention and our recognition and our support, and some practical help.
Megan Gilmour 17:31
Absolutely. And I reflect on the fact that there’s the caring role, which is the physical aspect of it. But of course, what goes alongside this is often a deep, emotional connection and actual caring – you care incredibly deeply about the people that you’re looking after.
And, yes, I think that it’s a certain kind of relationship which has its complexities. And those numbers, they’re 400,000 young people. Yes, this is definitely something we need to be bringing to the fore in all our places of operation. And we’re going to get into a bit more detail about that.
But before we do, what’s your biggest hope for young carers?
Annabel Reid 18:30
Yes, great question. Look, I really think school is a place where young carers are just not well supported enough. I really don’t think there’s enough awareness and education out there. And you know, we do consult with people like social workers and youth workers and people in pastoral care roles in schools.
We did quite a bit of work on that recently, and it became apparent that even if you want to help a young carer, it’s actually really hard to prove they’re a young carer, and that’s the only way they can get an Individual Learning Plan.
And we’re seeing carers have lowered outputs at school, like lowered outcomes in NAPLAN and things like that. So, we know they’re an area of educational inequity, but the support isn’t there to help prevent that, and there is for other groups.
You know, if you’re a student with disability, there’s support available. If you’re a carer, you know, good luck. So that’s something I really want to see change. I think there are a lot of things we could do for young carers, but I think that recognition of support at schools is the missing part for me.
What we do see at university level and TAFE and education and even many workplaces can make those adjustments more easily, but school’s lagging behind, and we forget that that means primary school as well.
There are really young carers. We’re not just talking about someone in year 12. You know, we’re talking about quite young children managing big things, and they could do with some help, to be able to enjoy the same experience as their peers.
Megan Gilmour 20:03
Well, I totally agree, and we’re going to get to, I think we’ll get into a bit more juicy stuff about that, because, you know, I had to adjust my glasses when you said it’s really hard for them to get an ILP or prove that they’re carers.
So, it’s just, there’s a legislative definition of that that’s absolutely clear. And I’m just going to argue right there that that’s incontrovertible, if you tick these categories and that’s the definition, then, yes.
But I think before we go there, let’s just cover off, are there any other common misconceptions or frustrating public misconceptions about young carers? You’ve named some things there. I think it’s worth just wrapping up if there’s anything else you want to include.
You’ve said that they’re invisible, they aren’t getting the support that they need. I mean, let’s throw in there the fact that they are working for free in a public health capacity. And they’re not getting the supports that they need at school and any other places.
They also need to be able to work often, and that’s difficult for them, with sort of current structural issues to do with employment for young people.
And let’s also probably throw in the fact that, you know, this is an intersectional issue. It can happen to anyone, in any family.
Annabel Reid 21:38
Yes it absolutely can. Yes, yes. And I suppose there are probably, you know, groups of carers or carers within certain communities where things get a little harder again. So, you know, if English isn’t your first language, for example, even navigating supports, NDIS, all those things as part of your caring responsibility will be hard.
But it’s probably even harder to front up to a teacher and explain, or, you know, school counselor or something, and explain what’s happening to you, because you might simply think it’s part of your role in the family to do that, and you’re expecting yourself to cope.
So, people have different cultural ideas of what caring means, and in different capacity to communicate that effectively in order to get the help they need. So, you’re right about intersectionality. I mean, it can happen to anyone, but there are certainly groups that might find it even harder to navigate depending on their circumstances.
And again, being regional or remote, that makes things harder, because there are less services, so more pressure on family and friend carers to step in and do things that services might normally do.
So, an example of that is, I’ve heard of carers teaching themselves occupational therapy and delivering online sessions because there’s no occupational therapist within an eight-hour drive. You know, they just can’t get to that service.
So, they’re trying to do it online with someone and be the facilitator, so that they’re really teaching themselves some health professional skills that are outside their scope, but they’re fresh out of options and doing their best by the person they care for.
Megan Gilmour 23:12
Yes, and another acknowledgement, just that they are actually filling a gap in our systems. This is a really critical point that’s coming out for me.
Annabel Reid 23:21
Yes, and look, that’s some we did a bit of work with Deloitte Access Economics in 2020, and they’ve done some recent work on this too, and it was about working out the cost of replacement care for one year for all of the unpaid carers in Australia, which at the time was about 2.6 million carers. Noting that only counts carers aged over 15, and we know there are a lot of carers under 15, so they’re even more hidden.
If we added up that cost in 2020 it was about $78 billion in today’s money. That’s over $100 billion worth of contribution unpaid carers make. Last year’s Federal Health spend was $112 billion. It’s getting pretty close, and we rely on $100 billion worth of informal care, but we don’t talk about it, and we can’t do without it.
Megan Gilmour 24:16
Absolutely we can’t do without it. And they’re such startling numbers. At the same time, it doesn’t surprise me at all, given the number of people that we’re talking about. And it just, it brings home that one of the places for support for young people is in school. So, we’ll get to that in a moment.
I just want to ask this question again; how many Australian children and youth are young carers right now?
Annabel Reid 24:48
So, 400,000 young carers in Australia right now, but it’s not the full number, because we’re using a data set that gathers data about carers aged 15 and over, and we certainly know there are more young carers aged under 15.
Megan Gilmour 25:04
Yes, so that’d be 15 to age 25?
Annabel Reid 25:08
Yes. So young carers are carers aged under 25 but the data set only gathers from 15 and up, and then we start to classify people into age groups to understand where the caring tends to happen.
Megan Gilmour 25:23
Yes, it’s a lot of kids,
Annabel Reid 25:24
It is, it’s almost one in every classroom
Megan Gilmour 25:26
It is, yes, absolutely. What kind of complications do young carers themselves experience within themselves? What does that look like?
Annabel Reid 25:40
Yes, yes, I think it can be quite a stressful role. So, I talked a little bit before about that sense of having to be on high alert. You’re often attuned and ready for an emergency, because that might happen, and does happen. So that adds a layer of stress and emotional load to any carer, but certainly to a young carer, and that can be really hard if you’re navigating school and life.
Imagine being a teenager. I mean, that’s hard enough, right? And this is another layer of emotional and cognitive load, and it means there’s not as much space left for other things.
Young carers often talk about being lonely, so imagine caring for someone, maybe a sibling with really difficult or challenging behaviors. It means a young carer is unlikely to bring friends over to their house because they are embarrassed, or they don’t want to have to explain, or they just assume no one else understands how to interact with their sibling or what’s happening. And so, they tend to isolate themselves.
Also, just the logistics of being a carer, not having much spare time, also can be socially isolating. You literally just don’t have time to go to a friend’s birthday party or go to the movies with friends or play a sport and do those things that other people might do to build their network and build social connection.
It also might mean being isolated from your community. You’re not engaging in community activities you otherwise would engage in. So, there’s, yes, loneliness, stress and a high cognitive load.
And I guess also it might mean, you know, in terms of school or sport, you’re missing out on things so you’re not getting exposure. So, you might be building a really high emotional like an EQ, yes, you might be really good in an emergency – carers are usually pretty organised – they have to be ninjas with their schedules. They have to be really good at that.
So young carers are probably building some incredibly valuable skills, but in terms of taking care of themselves and having time to be a child and be silly, they’re probably carrying emotional load, cognitive load, and quite a high responsibility, which means they’re less likely to, you know, just go, and, I don’t know, get on the bike and go for a bike ride and be silly with their friends.
Megan Gilmour 27:57
Yes, no time, no money, no scope or capacity. And I guess the anxiety and mental health issues there, not to mention potentially carrying more than one chronic condition themselves,
Annabel Reid 28:17
There’s potential for that too. Yes, we know 40% of all carers live with disability, and that’s higher than the general population.
Megan Gilmour 28:26
And do they tend to struggle with mental health issues?
Annabel Reid 28:31
Yes, sadly, yes, and we know this from our carer wellbeing survey, and I was talking about that a little bit earlier, really decent sized dataset, but we know that carers are twice as likely as other people in Australia to have lowered wellbeing.
And I think the loneliness and isolation that’s a big driver of lowered mental health, but there can be lowered physical health too, and that’s because carers often don’t have time to maybe prepare really healthy meals or have time to exercise. They’ve sacrificed those things to do their caring responsibility.
Or they may get physically injured from caring so imagine having to lift someone in and out of bed, or you’re waking up every hour through the night to turn someone immobile in bed, so they don’t get bed sores. Some of the things carers do are physically taxing and are taxing on their bodies.
Megan Gilmour 29:24
Yes, it would be physically taxing, for sure. And I have this question, which is – I was almost going to hesitate to ask. I did hesitate to ask it, but I think I’ll go ahead and ask.
Is it possible, do you have data of young carers being mistreated by the person who’s needing care, or are they more likely to be mistreated?
Annabel Reid 29:56
That’s a really difficult question, but a really important one. And to be honest, we don’t have great data on carers experiencing abuse. We know it’s an issue, and some of our members, so we’re a national peak body, and our members are the carer organisations in every state and territory, and they’re experts on carers in their local area and deliver services. So, there might be Carers New South Wales, Carers WA, Carers Victoria and so on.
They do have some research, because carers do experience abuse at the hands of the people they care for. And anecdotally, I know that, and that can be due to mental ill health, substance and drug abuse, or challenging behaviors that go with a condition like dementia or high-level autism.
So, we certainly know, yes, I know that happens to young carers, and that might include physical abuse, verbal abuse, things like that.
But we don’t have enough data on the instances of that, whether it’s worse for young carers than for other carers, and it’s a particularly difficult issue, and it’s hidden, and we do try and advocate for some change on that too.
I think we really need to investigate how often this happens. There’s often – you know people talk when they’re talking about older carers, they sometimes talk about being worried about abuse of the person being cared for. That comes up a lot. But what we don’t do is flip it and say, What about the carer?
Megan Gilmour 31:25
Yes, because it is a volatile situation where people aren’t doing well. I mean,
Annabel Reid 31:32
You’re right
Megan Gilmour 31:34
Conflict and, maybe things happen that might not happen if people weren’t in those circumstances.
Annabel Reid 31:45
Yes you’re right. People are under high duress, financial duress, emotional duress. So, you’re right, it can be volatile, and probably for a young carer, there’s another layer of complexity. They probably don’t want to tell anyone it’s happening. They’re scared they’ll be taken away. But they also feel responsibility for the person they care for, if I’m taken away, who will care for mum or dad, so it’s an incredibly complex situation that requires a lot of support and sensitivity.
Megan Gilmour 32:17
Yes, and that emotional connection to that person, regardless of whether, whether the relationship is going well, that I think stands out for me is when you’re engaged in the physical care, the emotional, mental care of someone that creates an emotional attachment, even if that relationship isn’t going well.
Annabel Reid 32:42
Yes, and we do have some, I mean, it’s such an interesting point. We do have some carers that are really firm in saying, I don’t love the person I care for. I do it out of duty. So, we can’t always assume a caring relationship is a loving one. Sometimes it’s out of duty or necessity, and we’ve recognised that.
Look, it’s really unique, isn’t it? Everyone has a completely different experience in this, so there are carers that might be caring for someone they potentially resent and have been abused by, but they still feel compelled to do the right thing by them or must do it through necessity. So, it can be incredibly complex.
Megan Gilmour 33:17
Yes, well, that emotional connection doesn’t necessarily have to be a positive one. It can be an obligatory, as you say, there’s something binding these people that is not ordinary. And I think that’s, you know, it just feels very complex as I listen to it.
Annabel Reid 33:38
It is, it is. And carers always insist, you know, that people don’t understand, and I can see why it’s hard to understand if you’re not in that situation, and you’ve really got to give it some deep thinking just to start to appreciate what’s going on.
Megan Gilmour 33:52
Yes, and there’s a question here about siblings and peers of young carers and how they’re impacted, and what should we be across in terms of the siblings and peers of young carers?
Annabel Reid 34:09
Yes, good one. Yes. It’s good to think about the siblings. And you know, sometimes many siblings are engaged with care. So, if there are one or more family members needing care, you know, the responsibility may be shared, which is good, but it might mean really young siblings are starting to participate in providing care, which is hard at a young age.
I think a sibling, you know, is going to be experiencing much of what the carer is in that the household, like we’ve spoken about, is under some duress, and probably likely to be in financial duress, or, you know, struggling to afford bills. That happens far more to carers than other families.
And we’ve explained, you know, the cost pressure, but also the challenge to participate in paid employment with a high caring responsibility. So, there’s often less money to go around. That might be less money for school excursions or uniforms or a laptop or sport or things that people normally participate in.
It might also mean, if there’s a young carer, maybe an older sibling in the family, they might do a lot of work parenting younger siblings in addition to caring duties, because parents are busy focusing on other siblings or one of the parents might need the care, and that means they’re being sort of parented by a brother or a sister.
And they might be helping with them with homework, or, you know, cooking dinner for them, or picking them up, dropping them off at school, if they’ve got their license, or walking them to and from school. So, you know that they’ll have a different relationship with their sibling to probably, maybe a typical relationship.
Lastly, they’re probably stepping in and doing more household tasks themselves, because you simply need all hands on deck, so to speak, to get, like, the house clean or something like that. So, where a younger sibling of five or six might not normally have to chip in, but they’ll be chipping in.
Megan Gilmour 36:03
Yes, buying the groceries, buying the food, whatever has to happen there. And so, what stood out for me there amongst all of that incredible feedback, was that a young carer could be caring for more than one person.
Annabel Reid 36:20
Absolutely. And, like I said, when we talk about caring, we’re talking about people needing care. They might also be parenting, you know, in larger families. And we do hear stories of carers. You know, with lots of siblings, maybe seven or eight, they’re working pretty hard to look after all of those people, and there’s no time left for themselves.
Megan Gilmour 36:44
Now I think I know the answer to this, but I’ll ask it anyway. Do we know the current population of school age children? So, I guess five- to 18-year-olds who are young carers, and if we do, how accurate is it is, or is the data tracked?
Annabel Reid 37:00
Yes, great question. So really we only have visibility of the group 15 to 18. There are some breakdowns, and I’d probably need to take it as a question on notice for an exact breakdown.
We do know that you’re more likely to not be a primary carer in primary school. So, a primary carer is the carer with the most responsibility. But there are, in the 15-age group and up, about 5% are primary carers, which means they have the sole or primary responsibility in the whole household.
So, they could be a 15-year-old and it’s them. They’re – especially in single parent families and things like that – they’re taking care of everything and holding it down or providing a really large support role.
I think what we do need is better visibility of those younger carers at primary school, because some young carers describe an experience where they can’t remember when they started caring. They started caring before they had memory.
Megan Gilmour 37:59
Yes, that makes sense. I was thinking back on, you know what you said earlier about maybe schools not recognising this caring responsibility, and it’s potentially that these kids are being just rolled into the low socio-economic status group or something like that, rather than this distillation of data that gives us more accurate crossovers.
And this is something that I’m really passionate about. We often talking about the silos of either health conditions or mental health conditions, or low socio economic or rural kids, and actually, it’s a Venn diagram. Actually, if you pry into one child’s life, it’s a Venn diagram.
I’m thinking of some of the things you’ve said earlier, thinking of a kid who’s living in rural New South Wales, in a large family, and just reflecting on what you’ve said, as we go into talking about school, I just want the audience to kind of hold that space for this complexity of even where you’re located and how much that’s going to play on school.
Annabel Reid 39:33
Yes, location counts for sure. But I mean, remember that caring cuts across every part of society. It doesn’t choose so it usually doesn’t represent a single group in society. And that’s probably one of the stereotypes we might hold internally too.
We often think, oh, you know, they’re in a wealthy suburb of Sydney that have plenty of access to support services, no, because the people providing the support services can’t live in that part of Sydney. So, we often make assumptions that aren’t true, and we think there’s some kind of support out there that might not be there at all.
Megan Gilmour 40:09
Yes. And again, it’s these, you know, aspects of a young person’s life that, as we talk about school, they might have, even in that example you just gave there, they might have seemingly the right conditions for being able to attend and attain at school, but they’re playing this carer’s role.
Annabel Reid 40:38
So that’s right, and you don’t know it’s happening. I think the best thing is to, yes, sort of park the assumptions and speak to a carer to see where it’s really at, because it’s so easy to assume things, and then the more you do realise, some of those assumptions aren’t relevant at all.
And again, carers have a unique experience, and I think they deserve for us to listen and hear about what they need and adapt that. Some carers really talk about their functional capacity to care. They’re thinking that’s the frame I want you to look at me from. Don’t make assumptions because of where I’m from. You know, really just assess what I can and can’t do. Yes, I think that’s probably a really logical way of looking at it..
Annabel Reid 41:15
I think that’s probably a really logical way of looking at it.
Megan Gilmour 41:18
Yes. So, do young carers currently miss a lot of school? And if so, why?
Annabel Reid 41:25
Yes, they can. They can. Absenteeism is usually fairly high. You know, a typical example might be having to leave school at lunchtime instead of at the end of the school day because something happened at home and you’re needed.
So, it’s a sense of emergency and being on alert. Or if you’ve got to take someone to a medical appointment, or, provide some other caring tasks, you know, accompanying or helping someone through a therapy session or something like that, then you might not be at school at that time.
So, what it’ll look like from the outside: The young carer will look like a high absentee student, not well prepared, potentially late for class or leaving early. They’ll look distracted, tired. Might not have lunch or food, like I said, might not be in a washed outfit or uniform. They might look a bit scruffy, because there’s just not time to worry about brushing hair, because that’s low on the list of priorities today.
Megan Gilmour 42:22
Yes, MissingSchool has been telepresencing children who can’t go to school, primarily with health conditions through telepresence robots into the classroom.
And if, if mainstream school, or all schools in Australia, offered this opportunity to be able to two-way digital connect to the classroom, to take classes, do you think this is something that would support carers, young carers?
Annabel Reid 42:57
I think it potentially could. I think it’s partly location, sometimes that provides a location flexibility. But I also think young carers probably could do with some other flexibility around their learning plan at school too. Like it might be things like, I need a bit longer for an assignment because an emergency came up at home, and I lost four days because someone was at hospital and I was too.
I think it’s ironic, isn’t it, as an adult in the workplace, you can navigate that quite easily. As a student at school, no one believes you. So, you know, it becomes incredibly hard for a younger person with less capacity to advocate, we make it harder for them.
At most universities, like, ‘Oh, you’ve got caring duties, we’ll give you a few extra days on that assignment’. They’re really good. So, I think, I think it would be flexibility of timing would be really helpful. Maybe, you know, much like if you have child with learning disability, they get a bit more time on a test, or just some adjustments are made to accommodate where they’re at. I think we could do that with young carers.
And then I think that remoteness, flexibility, could also be really helpful, because traveling to and from school is time they might not have. It might be money they might not have. There’s no money for transport. Or it might be, you know, just the physical logistics, no one can drive them, or they can’t physically get there. You know, something happened with mum today, and there’s no one to drop us.
So, I think that certainly would be an enabler. But I think really speaking to a young carer and assessing their capacity and building a game plan around it, and just some simple adjustments and acknowledgement, including in year 11 and 12.
Megan Gilmour 44:36
Oh, yes.
Annabel Reid 44:37
So right now, that’s where it gets really hard. You need evidence to show you need variation. And so that means young carers go to the doctor and get a whole lot of letters to prove that they’re doing this task. We’re making it hard for them.
Megan Gilmour 44:52
Yes, and well, there’s a requirement there for actual attendance, to be able to get your certificate in the Australian qualifications and training framework. And we understand why these things are needed, but we’re all coming from the same position.
It’s not that these children don’t want to be at school. It’s not that these children dislike school, even though some of them might, but they’re – and listening to your stories about young carers – they’re people with great capability. I mean, look at what they’re managing. So, there’s great potential there.
And I draw attention to the Disability Standards for Education [The Standards], where, as I think about young carers, unless they were able to identify through a doctor’s diagnosis that they have a disability, physical or intellectual, if they have a physical health condition which is often not associated with The Standards, although it is clearly in The Standards, or any kind of mental health situation.
But unless a young carer presented as, say, if they didn’t have a physical health condition, and they weren’t willing to identify a mental health condition, then the Disability Standards won’t cover them.
And yet it could, I hear what you’re saying. I mean, we have enough challenge with the standards to do with certain groups of kids not being naturally associated with it, even though it’s clear in black and white in The Standards.
But this is just a separate case altogether and getting that Individual Learning Plan that would provide those adjustments that are, for example, given in circumstances for children. This is actually a social disability in a way, isn’t it?
Annabel Reid 47:02
Yes, yes, it’s difficult. It’s a difficult way to describe it. We usually talk about it like a responsibility, because, you know, out of respect for the people being cared for, many carers that do not talk about their loved ones like a burden.
And in fact, many carers have a lot of pride in what they’re doing. They’re doing something great. So, I think, yes, I don’t know how we can describe it, but I think you’re right. Young carers are an area of educational inequity, and we haven’t addressed it.
And the outcomes are really quite devastating. I heard from a young carer a few weeks ago, 16 had dropped out of school to do caring responsibility, and she said, I wonder what my life might have been like. It’s terrible. I was like, imagine saying that at 16,you’re just starting!
Megan Gilmour 47:55
Being able to see two parallel pathways for your life and
Annabel Reid 48:00
just sliding doors moment, and not the happy way,
Megan Gilmour 48:04
Yes. And it shows that emotional intelligence and sensitivity to be able to, you know, hold that for yourself. And it breaks my heart, because it could be so different. It could be so different.
And I always use the example of, if schools were designed for children with health conditions, medical or mental health conditions, we wouldn’t have school absence in the numbers that we have it, which is incredible amount of 1.65 million kids not attending school for 10% or more.
We don’t know how much that more is. That’s a lot of kids. And I’d say within that group would absolutely be young carers, from primary school to high school and senior high school, absolutely and they’re not seen.
But if all schools were designed to cater for young carers, they could continue attending school, virtually, online, back here, physically unable to get this flexibility, and that sliding doors moment that we just pointed out, could that parallel pathway could close, and this person with huge potential, who has huge capacity would be able to continue.
Because the problem is also that the more school that students miss, the more anxiety is associated with catching up and keeping up.
So, you can also understand that the caring responsibilities might take that person out of school, but also the missed school might take them out, because in the end, they just say, this is just too hard. I can’t keep up; I can’t catch up.
Because not only is there that huge responsibility already there that you’re trying to manage, how are you going to catch up? If you don’t have time to do so.
Annabel Reid 50:15
I think it’s mentally, yes, overwhelming. I think so. And I think that example, that really showed a carer that had made a choice, young carer, she’d made a choice she didn’t want to, and I think you’re right. It impacts in that moment. There’s a lot of pressure. It’s the trajectory it’s affecting across a lifetime that I find so devastating,
Megan Gilmour 50:39
Immeasurable.
Annabel Reid 50:40
Yes, and I think, you know, there are opportunities to reengage with school and university and TAFE later in life. I mean, it’s not like, if you don’t go early, it’s never going to happen, that’s absolutely not true.
But also, we’re talking about confidence building and capability building and feeling like those things are accessible. And we’re talking about a group who are working very hard and contributing, and it’s almost sabotaging some of their options. And it’s not right.
Megan Gilmour 51:09
No, it’s not right. It’s the same for kids with health conditions. It’s like they fight really hard for their lives, and they do everything that’s asked of them to keep that life. And in this case, these kids are playing the role that you’ve described.
We can at least provide them with the opportunity to reach their potential in the way they want to reach it, because disconnecting from school, as you say, in the trajectory, is how many of those kids, and we don’t know the answer to that, would be able to sort of pony up later on if their caring responsibilities are relieved, and then go back and try to…
You know, we’ve got a national productivity issue here in Australia, and yet we’ve got this huge untapped potential that is not in the classroom, getting the opportunities and then the workforce opportunities and yes, it’s hard to ignore, and it’s such a valuable conversation.
As we sort of head towards the close here, are there critical times in school for these kids that we should be thinking about or know, or biggest challenges or vulnerabilities at school that we might want to draw out? Is there something there that we need to cover?
Annabel Reid 52:39
Yes, that’s a good question. I mean, it’s very complex, and caring can change over time. So, I guess I want to point out that, you know, some caring experience is fairly regular throughout a week. Other care experience is very sporadic.
So, there might be young carers. For example, caring for some time with someone with mental illness can be sporadic, and might mean periods of stress and periods of not. So, I do think the Individual Learning Plan and flexibility, if that could be offered, that would help ameliorate those, those issues, to a large extent.
I think year 11 and 12 does sound really challenging for young carers, because the rules change around, and you mentioned this about demonstrating – you’ve got something going on and proving that you need a learning adjustment.
And I don’t want to this is a philosophical thing, and it’s quite a difficult thing, because obviously we want people to be competent and capable and pass their exams and be able to learn difficult things. And do you know complex jobs later on.
But is there a way of extending or changing that, or having an option where you take, I don’t know, 18 months to do year 12 instead, or is there some work around we can offer because there seem to be a substantial group of people that might require it, if it helps affect their trajectory and their ability to participate in the workforce in the future, and the people who want to be in the workforce and the people we want in the workforce, you know.
So, I really think if we could start, I’d certainly look at school, because I think university and TAFE and tertiary education broadly have actually adopted reasonably good flexibility. So, I think our urgent area is school.
But I think year 11 and 12 seems particularly challenging, and that’s where the absenteeism and dropouts happen, not necessarily because someone wants to. I mean, if someone takes on an apprenticeship in grade 11 they’ve got an education and a career focus. If they’re dropping out because they can’t participate, then they’re not being given a focus, they’re not being given an opportunity to choose the thing they want to do.
Megan Gilmour 54:38
It can be different.
Annabel Reid 54:40
Yes, I want to say it can be different, so I’m happy to speak to anyone about how
Megan Gilmour 54:47
Me too. In fact, I don’t stop talking about it, but it’s just because I know it can be different. I mean, we proved that since 2017 when we reconnected children directly to the classroom through a two-way, digital connection, which was then proved throughout COVID.
The requirement through COVID, when people were caught at home in a crisis, young people, was that they’d be provided with a continuing connection to their education, and yet, we’ve carried forward all of the challenges and the fallout from COVID and the trauma, but we left behind the overnight innovation of that. It was done. It wasn’t theoretical. It was done.
And I think this is one of the most disturbing realisations as we head into the cognitive revolution and living in the 21st century with the place that we’re at now, all of these things you and I are talking about are completely possible.
They’re a reality for workers. And you know, you mentioned University and VET sector, the workplace, which is what schools are supposed to prepare you for. I know that’s changing, but why can’t we provide this at school?
And I think this is the question here, I know can, as we do, it’s just how to get that mainstreamed, and that’s why it’s so important for us to have these conversations. And everybody we talk to on Live & Learn is saying the same things.
So, our schools need to be designed differently for people in different circumstances, and the current world that we live in. And I’m sure, this point in time, there’s always been carers as it’s defined, and you’ve defined it.
But you know, there were times when communities of families lived closer together, too, and that has also changed as well across time. And I can see where young carers might be picking up the load where, where, you know, maybe in previous generations there was more support there for people, but that’s just a speculation on my part.
So, in closing, is there anything else that you’d like to mention about school quality of life for young carers?
Annabel Reid 57:39
Well, I might mention some happy things, then. We’re celebrating the 10th year of the Young Carers Bursary this year, and there is bursary available for young carers, there are limited bursaries available, but those applications open on the 10th of October, at 10am.
So, I encourage if there are young carers out there, just Google Young Carer Bursary, and you’ll probably find our web page, and it will tell you how to apply if that’s relevant for you. So, there are some supports out there.
I also recommend young carers reach out to their local carer organisation, like the Carers ACT, Carers South Australia, Carers TAS, it will be a peak carer organisation locally, and they do offer supports and often peer groups and counseling and education for young carers, or at the very least, they’ll be able to connect you with other groups that provide support services, and even respite and activities and weekends away. There are some great organisations doing things like that for young carers.
Lastly, you know, there is the Carer Gateway. They’re extending their counseling hours, and that’s a really good federally funded resource. So just Google Carer Gateway, and you’ll come across that one, and there’s lots of assistance and even services for carers too.
So, I do encourage you, if you know a young carer, or there any young carers listening, please do reach out and get some help. The earlier you start organising supports around you, the easier it gets over time, because some of those supports take a little bit of time to arrange, as you may well know.
So lastly, it’s national Carers Week from the 12th to the 18th of October. So, I encourage everyone to celebrate carers during that time and recognise carers you know, you probably know one, you are one, or you may well become one at some point in time.
Megan Gilmour 59:37
Amazing, and thanks for taking us to that hopeful and positive note about the support that’s out there and note to our team here that that bursary application process is opening in October, and so we can get that out on our socials and promote that for you as well.
What’s your call to action for young carers in seven words or less – if you have one?
Annabel Reid 1:00:07
I would say, reach out and talk to someone about your experience. Just the lived experience. Find a trusted person, yes, and you don’t have to give them all the detail, but I think once you start to realise the role you have, and you’re allowed to talk about it, I think it will enable other support, some help and recognition for you.
Megan Gilmour 1:00:30
That’s a beautiful place to end. Thank you so much. And I want to give a big shout out to Annabel for the incredible work that you’re doing. And thank you just so much for coming on Live & Learn today and sharing your in how you come to be doing this work and your amazing insights and advocacy.
We need more people like you and the people at carers national, but also in every state and territory and so, big shout out to Carers Australia and the other chapters.
Carers Australia you can find at www.carersaustralia.com.au [https://www.carersaustralia.com.au/] there. Give generously, find the resources, share them. Keep in mind young carers, or any carers for that matter that you might know who could benefit from this great work and support that’s out there. Nothing like a shared lived experience to kind of bolster your morale and keep you going.
So, thank you for joining me today, Annabel on Live & Learn.
Annabel Reid 1:01:39
Oh, thank you so much, Megan. I really appreciate the opportunity to talk about carers, and it’s really good of you to shine a light on who they are and what they need
Megan Gilmour 1:01:50
Our absolute pleasure.
Megan Gilmour 1:01:54
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