Changing Australia: Madeleine Buchner and caring for the young carers

What'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?

When 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

and 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

and 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

and 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.

And 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

that 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.

We 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,

but 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,

which 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

that 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.

So 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

this 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.