Episode Transcript
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The Parliament of New South
Wales stands on the traditional landsof the Gadigal people.
We pay our respects to their elders, pastand present.
We proudly acknowledge all the Aboriginalpeoples of New South Wales
and honor their enduring connectionto the lands, waters and sky of the state.
The representatives of the people of NewSouth Wales gather from various
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Aboriginal lands across the stateto meet in this Parliament.
May the decisions made within these wallsreflect our commitment
to fostering a spirit of reconciliationand respect. And.
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Let's get started.
Big welcome to New South WalesParliament, Mattie.
Thank you.
Can you, share a little bitabout yourself, the work you do
for the little dreamers
and, a little about your care's dutiesin the needs of the person?
Yeah. So I am 31 years old.
I have grown up as a carersince I was three.
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The earliest memory I have of providingcare is when I was around
six years oldand pouring out my brother's medication.
So my brother is two and a half yearsyounger than
me, and has been in and out of hospitalsince he was six months old.
He has a range of chronic healthconditions, from epilepsy to encephalitis,
fibromyalgia, asthma and underand an adrenal insufficiency.
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He also has a lot of food allergiesand a lot of learning difficulties
that come from scarring on his
frontal lobe, from the encephalitiswhen he was very young.
And then when I was 14 years old,my mum was diagnosed with breast cancer.
My mom is very thankfully in remission,but has a lot of long term
health complicationsfrom the breast cancer.
So, she has rheumatoid arthritisin her hands and her feet, osteoporosis,
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and also has a very large numberof allergies and food requirements
now, which mean that we just havea lot of different milks in our family.
Between my brother, my mom and me,
and I also have also grown upcaring for my grandmother.
So my nanna passed awaylast year, but, had Alzheimer's
for a few years before that.
So I live in the same building
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as my grandparents and providesome significant amount of care for her,
which has meant thatI've got lots of caring responsibilities
and a lot of different experiencein my family, and I've been able
to take all of that and turn it intoan organization called Little Dreamers,
which works to supportand improve the quality of life of kids
and young peoplewho provide unpaid care in their family.
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It's fantastic.It's actually intergenerational carers.
You've got three generationseffectively there.
Yeah, I love it.
I mean, it's that kind of glosses over it.
It's really hard and it has its momentswhere it's awful and I hate it, but
I think I'm so lucky that I've been ableto have this experience
and I'm so close with my family,and that's not always the case
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for young peoplewho grow up as young carers.
But I'm incredibly lucky that I have suchan incredible relationship with my dad,
who I've shared a lot of the caringresponsibilities with, and then also such
a close relationship with my grandfatherand my mom and my brother as well.
It's a very interesting dynamic.
How is the relationshipwith those individuals in your family
with you? Like as your as the sister is,
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the daughter is the granddaughter versusthe carer.
My brother often jokesthat I am the Switzerland of the family.
I'm the mediator of the family.
I think when I was youngerI really struggled with my own mental
health and I really struggledwith managing my own emotions.
I used to get really frustrated
and really angryand not really know how to deal with that.
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I think as I've grown up,because I understand everyone so
well in the family,
I'm able to kind of understandwhere they're coming from in a situation
where they might be frustratedor having an argument with someone else.
And I'm very,very good at playing the mediator.
And my brother often jokes,
am I ever going to get the chanceto play the mediator?
And I say, no, because this is the roleI was born for and it's irrelevant.
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Sorry. Yeah.
And you literallywere born into that role.
What do you think the role of a carer is,or what makes a good care?
Or do you think.
What makes a good carer?
I think just love and carefor someone else in your family,
but you don't oftenhave to be happy about it.
I mean, when I'm in the midstof a caring responsibility,
mum might be in hospital or beforeNanna passed away she was falling a lot.
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It sucks and I.
I'm angryand I'm upset and it's stressful.
I'm very,very good at compartmentalizing things
and I think that's alsowhat makes a good care,
being able to compartmentalize yourselfand your care responsibly,
and what your needs are versus whatthe needs of the person you're caring for.
But to be a good care, I thinkall you need to do is literally care.
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Can you tell us a little bit aboutso you sort of mentioned little dramas
and that has a, a focus on young carers.
And you mentioned from the age of fourwas it.
Yeah.
That's that's incredibly young.
How did you find that experience.
And can you tell us a little bit moreabout how your supporting other
young carers such as yourself think so.
1 in 10 kids in Australiagrow up as a young carer.
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That's a lot of kids and we often knowthat the actual statistics
that we see on things like the censusand other reports like that
are massive underestimate of the numberof young people taking on care.
And we see young people taking on caringresponsibilities from providing
emotional and social support
right through to toileting, showering,medication management,
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managing emergency services, workingat very young ages to pay the bills,
understanding financial situationsthat their families are in.
And so we see young peopletake on a really wide range of care.
And we often say young people take on
caring responsibilities that are very farabove what other young people
their age would be expected to do,or even be taught how to do so.
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One of the things that we doat little dramas is help them understand
how do they provide care?
How do we teach them to provide care?
How do we support them to providethat care in a safe way for them?
But also, how do we teach themfinancial literacy skills?
How do they learnhow to read their payslip?
How do they make surethat their superannuation is being paid?
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How do they know how to find a bulkbilling doctor
so kind of looking at all of those thingsin one to make sure
that they're able to be young peopleand young carers as well.
Did you have that same level of supportwhen you're that age, you think,
or has it evolved since then?
I mean, I had no support as a young carer.
There was nothing that I accessedas a young person.
There was a kind of like a Big brotherbig sister
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mentoring program, but it wasn't designedspecifically for young carers.
And my big sister's name was Angie,and she used to help me do my homework.
And we made a mosaic mirror at one point,which was fun.
Bonding. It was funny.
Yeah, it was having someone who was justthere just for me, which I really liked.
But now we say young carer support inlots of different formats, so there's
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little dramas, which is Australia'sleading young carers support organization.
And then there are a lot of otheryoung carer support programs that exist.
And we think the more the better,because young carers need
the support, irrespectiveof where they live and who they care for.
That's grown.
And I'm just looking at the 2022National Carer Survey,
which you'd you'd be acrossthe details of that and looking
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at a lot of the statistics really resonatewith with your experience, I'm
sure we've got majority of young carerswere female at almost 70%,
65% of young carersproviding care for a parent,
for instance,enormous 35% provided care for a sibling.
How does that feel?
You must feel very muchat the center of that, that report.
I mean, reportslike that feel very validating
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now because it means that, hey,my experience wasn't alone
and I wasn't as aloneas I felt as a child.
But we still have
hundreds of thousands of kids growing upnot knowing those statistics exist
and not knowing thatthere are other young people
in their classroomsthat also have caring responsibilities.
And so while the statistics make me feelgood now, I think there's so much work
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we could do for our young people aroundbreaking down that stigma,
or opening up those conversations
and letting young people knowthat they're not alone. Now.
One of the thingswhich that report also talked about was,
as far as carers go,young carers have particularly high levels
of psychological distress,social isolation and financial stress.
To your pointaround the financial literacy,
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what are some of the challenges
that come with being a carerbut a young carer in particular?
Think about you're trying to balance beinga teenager and figuring out who you are
and how you fit into the world, alongsidealso having adult responsibility.
So you think about kind of the friendshipchallenges
you go through, the challenges around,what do I want to be when I grow up?
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What do I want to study?
What does the future look like for me?
And then you compound that with,
well, hold on, I'mcaring for a parent who relies on me.
Therefore I can't go into state to studyor I have to stay at home.
Or maybe I have to go straightfrom school to work.
Or maybe I can't even finish high schoolbecause I need to get a job
and I need to contributefinancially to my family.
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And so you're taking all of the challengeswe already know exist and face
kids, young people and teenagers,especially in the post-Covid world
where there is a lot more mental illnessfacing young people.
There's a lot of challengesbecause learning was online
and a lot of a lot of our young peopledisengaged from school completely.
So we're trying to get them reengagewith school.
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Plus, then you're also caringfor someone else in your family and a lot.
Yeah. And what you mentioned,
previously, some stigmas.
What do you think some of the stigmasthat, associated with caring.
I mean, stigma can go from bullying,like really severe,
a very high rate of, oh, a high percentageof young carers face bullying at school.
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And whether that'sbecause the person that careful
looks different or acts different,or they can't hang out
with their friends after schoolbecause they have to go home and care.
This is a lot of bullying.
There's a lot of fear aroundbeing taken away from their family,
especially if they care for a parentor someone
with kind of alcoholor substance disorder.
And so you don't want to tell people,because the fear of child protection
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is quite largeand the fear of the unknown is really big.
And then also there's just I don't wantto be seen as someone who's different.
Yeah. That's right.
I don't want to be sayingthat my family is different.
I don't want to tell people that.
I just want to be, quoteunquote, a normal kid.
And that comes up a lot.
And so growing up, was that somethingthat you that was challenging for you?
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How did you overcome that?Was there any support services?
Obviously having a little dreamsremain fantastic back then.
So how did you you mentioned, Angie,was it the mentor that you had
with their support networks in place,and how has that evolved to now?
Can you think of any examples like that?
My parent to my brothergot a lot of support.
So my brother was supported by Sally,and I got to go along to his Starlight
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Wish, which was really fun.
We got to go swimming with the dolphinsand they were supported by an organization
called Tail Safer Kids,where my brother was provided
with distraction boxeswhen he was in hospital,
and they even helped usget a washing machine when out broken.
We couldn't afford a new one.
And so there was a lot of
support for my parents and my brother,but very little support
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for me as an individual,sibling or child in that family.
And I think that's what we need more of.
And that'swhy Little Dreamers was created.
But there's so much morethat could still be done.
And when it comes to financial support,I mean, I got a job really young
the minute I turned 14 yearsand nine months, I got my first job
and started contributingfinancially to my family as well.
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So but then again,I don't know any different.
That's right. It's not.
I think for me, it's not like I grew upand took on a caring role
when I had already developedwho I was as a person.
This is just how I've grown up.
And yes, my caring role has changedbecause I've taken on caring for my mom
and taking on caring for my grandmotherat very different points in my life.
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But I don't know any different.
And I, I all I almost think that's,that's a blessing for me.
I personally, I struggle with my ownmental health, I struggle with anxiety.
And so I don't know if I'd takenon a caring role for the first time
when I was older,like so many of our young people do.
I don't know how I would of process that,and I think that's
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a very different game to play firstwhen you're born into that role.
Yeah, very different experience.
You mentioned you'd started work at 14almost 15, which is incredibly young,
and you obviously had to managebringing in money, balancing
the care of both your younger brother,your mother and your grandmother.
How do you how did you andhow do you continue to find time for you?
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Not very well.
I am a chronic to do list writer.
I have 3 million differentto do list going on at the same time.
One for work, one for life.
And I try and make surethat I can get everything done.
As I've grown up, though,I've realized that I need to be okay
with not checking everything off,
but it's taken me a really long timeto figure that out.
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I have a beautiful dog,I spend a lot of time with her,
and I think she's kind of my outletto make sure that I can get time
for myself, but as I've done moreand more work in the young carer space,
my family has also understoodmore about being a young carer
and what impact that has had on my lifegrowing up, so they are also
incredibly passionate about making surethat I have time for myself.
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And do I need to be going to do that?
Can I go and do something else?
And sometimes there are timeswhere you need to drop everything
and go to the pharmacyand go to the hospital
and pack a bag and do all those thingsthat you need to do.
And there are other timeswhere I've learned, and my family has been
incredibly encouraging around knowthere's someone else you can pick that up.
You need to do something for youright now.
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It doesn't always have to be, you.
Know, it doesn't always have to be you.
One of the things
which I'm interested in, and you mentionedyou were sort of thrust into this role.
What advice might you have for peoplethat are taking on a carers
role like so for example,at New South Wales Parliament?
The portfolio that I'm particularlytaking care of is carers,
which is about raising awarenessof the issues and challenges
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and opportunities that that carers faceand what support networks are there.
What advice would you havefor someone who is, arriving as a carer
relatively recently and withoutany of that background experience?
I think the most important thingis to look for other people around you
who can help.
So what other organizationscan you access?
What Centrelink payments might you be ableto access to take some pressure off
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around financially?
Can you access, support around
free internet or childcare,or is there flexible
working arrangements at your work?
What can you put in place preemptively?
Because I think caring can come insuch different fluctuations.
Sometimes it can be very intensevery quickly and other times it can be,
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you know, it's coming.
It's a bit of a slower buildand I think it's all important around
how can we put in strategiesto help us proactively
rather than reactively when possible,but also make sure you talk about it,
make sure you you talk to your friends,your family,
your work colleagues about itbecause you don't know
what other resources they haveor what they might be able to do.
Something like cooking a meal soyou don't have to cook dinner one night.
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It makes a massive difference.
That's interesting.
And you mentioned sort of colleagues,what kind of workplace
do you think do to best helpresponsibilities of a carer?
I think the best thing a workplace can dois bring in carers leave
that is separate to personal life.
So in Australia we have personal leavewhich incorporates you're sick leave,
annual carers leave, the biggest thingand most important thing
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a workplace can do is introduce separatepaid carers leave so that a person doesn't
have to use their own personal sickleave to take care of someone else.
That's a really good point.
You mentioned we had a bit of a chatbefore we caught up today,
and you were talking a bitabout some of the services you provide,
and one of the interesting challengesyou've got around
engaging carers digitally.
And you talked a little bitabout how some that affects, even down
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to the design of a website or information,can you share a bit of information
on some of the the interesting workyou're doing in that space?
So we often think young peopleare quite, tech literate.
And we think that that they're very goodat picking up tech quite quickly.
And I think that's
because we're teaching our young peopledigital skills from a young age.
But they're still digital.
Literacy is still learned.
It's not a natural skill that we have.
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So little dreamersoffers a range of direct support programs.
About 50% of our programs run online.
They range from eight weekpeer support groups
to short termkind of hour of power games online,
which you can drop in and drop outto through the tutoring
app through to onlinewebsites called Money Explora with help,
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which helps young peopleto understand financial literacy.
And all of our programs,
we make sure they're designedby young people, for young people.
And I think that'sthe number one thing that we do.
But also we need to look at what fontsdo you use, what user experience
do you have? What colors do you use?
I mean, a young person's brain processes
online informationvery differently to an adult brain does.
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So you might think that's on a websitethat's very clear and clean and easy
to navigate for an adult
would automatically workfor a young person, but it doesn't.
There needs to be different font sizes,different font shapes, different,
navigation tools, different colors,different language.
And so making sure that online programing
is designed specifically for young peopleis really important.
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And not just adding a young person'ssection onto an adult website,
which is what we saya lot. That's really interesting.
Do you find, young carers,young people in particular
are looking for informationor interacting with information
in informationin different ways in that way?
Yeah, definitely.
I mean, it's a generalization,but young people often
don't want to pick up the phone.
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So we have A18 hundred numberthat families can call little dramas.
It's always a parentor a service provider.
But our social media messages,our Instagram
like direct messages,almost always young people.
So you think about chat bots or onlinemessaging functionality
or a text message line.
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Much easier to get to young people.
We're running consultations at the momentto ensure that young carer voices
are captured for different strategiesand policies around Australia right now,
and emails don't work,but text messages do.
So if you're trying to get a young personinto a program, we text them
rather than email them,and it's very small things like that,
very small changes that to us is like,oh, we'll just send an email.
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That makes sense.But young people don't check their emails.
And so it's making sure that you're alwaysmaking adaptions,
adaptations for Young audience.
Yeah. Yeah.
That's that's so true.
I think that's very trueof every sector that we work in.
You mentioned,sort of common misconception around youth,
which was great.
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What's a misconceptionthat you've seen around carers.
So many,
misconceptions around the factthat they love their caring role?
Not everyone does.
And I think that's often it oftenfeels taboo to say you don't enjoy it.
And so that's a big misconception.
Everyone loves what they do.
They love their family,therefore they love providing care.
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I think that's probably the biggest onethat we say.
Well, what's one thing about being a carer
now that you didn't expect toto be your experience?
I think the skills that I've developed by
being a carerare all things that I didn't expect.
Knowinghow to navigate the medical system,
knowing how to navigate hospitals andhow to advocate for people in your life.
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Knowing how to I,I'm really good at googling things,
and I think that that's come fromthe skill.
It's a skill, right.
And I think it's come from jumping onto Doctor Google
when there was a symptom in my familyand I wanted to understand what it was,
I I'm very goodwith knowing how to manage.
I'm not good at my own money,but I'm very good at managing money
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and paying bills on time with the chef.
That doesn't eat. Exactly.
I, I'm very good at.
I think I mentioned it before, I'mvery good at compartmentalizing,
and kind of separating myself fromwhat do I need versus
what needs to be done in this situation.
And that has been so helpfulin my work life and my personal life,
where sometimes you just needto put your head down and get stuff done.
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And I think my caring role has taught me
how to do that, but also communicationskills, listening skills,
like they're all things that I developedbecause of my current role
that I don't think I would have developedif I hadn't been a carer.
Yeah, that's very true.
I think to to my experience,I've had, moments where I've had
a caring responsibilityand the information isn't there.
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So you have to find that information.
You suddenly get good at being ableto triage between these specialists,
that specialist, and part of your roleis to bring all that information together.
So it's it's a really uniqueskill set that you're developing there.
So. And can you,can you think of any movies
or films or stories that really resonatewith your experience as a carer,
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where you sort of saw momentsin, in that story with you?
Oh, there are so many.
I Am Sam is a phenomenal movie,obviously talks about a young person
caring for a parent,but there's there's so many.
I've read books, I've read movies,I mean, TV shows.
I constantly pick outstorylines in TV shows.
There was a storyline in 9 or 2 one,or there's storylines in friends.
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Like there's lots of storylinesthat you can find.
My favorite, favorite young carer movie
or movie with a young charactername is Wanda.
I don't know if you've heard about it.
It's movie about a young boy.
It's based on a true story with a facialdeformity that he's born with,
and he has 30 plus surgeries as a kid,and he wants to be an astronaut.
And it's pretty cool.
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And in the movie, it's got Owen Wilson and
Julia Roberts in it.
And the movie talksabout how the whole universe is structured
around Auggie, who's this young boy, butit tells the story of his sister as well.
And it's such a beautiful story.
And in the movie, she has an excellentrelationship with her grandmother,
and it kind of exploreswhat that like and how she feels like.
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The whole universe centers around Auggie,and she's just kind of off to the side.
And I remember going to see that moviewith my mom when it was in cinemas.
And even, like Julia Roberts characteris an artist and my mom is an artist,
and I related so much to the sisterand the dog kind of looks like my dog.
And I was like,is this just my family history?
Yeah, but every time I watch it, I crybecause it just
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it made me feel so seenand heard and recognized in a film.
Which is really important.That's really important.
I'm really interested in thethat intergenerational role that you've,
you, you've had.
Then you've managedto navigate successfully.
How did that dynamic play out?
But did you have to sort of changehow you're interacting with,
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say, brother versus your mom versusyour grandmother?
Were you able to apply all of the kind ofexperiences to each one of those moments?
I think that I've been able
to learn from each oneand be able to apply differently.
I think with my brother,a lot of my caring role for my brother
was very and probably frommy mom as well, was very emotional.
So a lot of emotional supportand providing of medication.
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So I'm very,very good at talking to a brick wall.
So if they need to be distracted, I'mvery good at distractions.
I am very goodat kind of playing games on phones
and kind of quizzes and providing that.
I call it humor relief. Yeah.
And I've and, very sarcastic as a person,so I think majority of my cast,
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my mom and my brother was around, howdo I make them feel better in this moment?
Whereas with my Nana,it was, a little bit more physical.
So how do we help lift her off the floorwhen she's fallen over?
How do we help get her dressed?
How do we make surethat she's taking her medication?
How do we make sure that my grandfathercould still go and play bowls,
and someone was there
to look after my nana so that he couldstill have a laugh at the same time.
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And so it was a little bit different,but once again, it was just around
being there for themand making sure that they feel empowered
in their own livesand in their own role as well.
I think for me, it was very importantnot to ever do something for them
that they could do themselves.
So how do I support them to still do thatwithout taking their autonomy away.
Giving them agency? Exactly.Very interesting.
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And then what? What? It's hard.
You can't distill it to one thing,but what's a superpower amongst carers,
do you think? What'swhat's one quality that they might have?
Such a good question.
I think that, the biggest superpoweris around
understanding the world differently.
I think that as a carer,you're often confronted with things
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that adults probably aren't confrontedwith until much later in life,
and being able to say themand experience them
when you're younger provides you witha very different perspective of the world.
A lot of our young peoplewe work with are incredibly accepting
their understanding of diverse experiencesof diverse backgrounds of disabilities.
It's not a how do we make this environmentdisability friendly.
(25:13):
This environmentshould already be disability friendly.
And so how do we it's thingslike a revolving
door is never disability friendlyand there's usually like a side entrance.
But why can'twe just get rid of the revolving door.
So it's it's
the way their mind works in that waythat I think is the biggest superpower.
Yeah, that's understanding that.
I love that understanding the differently.
(25:34):
And there's a kind of level of empathyfor what you're describing
that that carers have there.
Is that an important part. Of what you do?Yeah, massively.
I think there's young peoplewho grow up as young carers.
They love differently,they care differently,
they are more empathetic people.
It's just something that innately happensand it's something that I think
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is so beautiful.
When we look at the young people
who coming out programsand how they care for each other,
if one of them is upset
or one of them is talking aboutwhat's going on at home
and they're feeling a little bituncomfortable
watching how they all support one another,I'm never seen anything like it before.
Yeah. That's amazing.
And is there more, sort of a groundswellaround young carers being able to support
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one another in that sort of networked waythat you're saying?
Yeah.
So we run a lot of peer support groups,both in community, in school and online,
and the peer support groups really workincredibly well.
We also run a program called Big Dreamers,which is a personal development
and leadership program for kind of 14to 18 year old young carers.
And that's a more intensive programwhere we help young carers understand
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who they are outsideof their caring responsibilities
and really develop what their identityand value system looks like.
And we do delve really deeplyinto their carrying experiences
in that program and watching them allcome together to support each other.
It's a six month program,so they really get to know each other
quite well, and watching them buildrelationships in that way
is is really specialand there's a real need for it.
(27:01):
Okay.
And you sort of talking thereabout the support networks that are there
and big premiseskind of the the progression if you like,
just to sort of finish up on thewhere do you see young carers
going like that, the,the industry, the support networks,
where do you see thatgoing into the future?
I think around Australia at the momentwe have really good respite support
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for young carers.
I don't think there's enough of it,but what we do have is really good, great
holiday programs, great campsfrom a range of different organizations.
What we need next for young carers
is we need more supportfor them in their caring role.
So how do we educate them to care betterand care safely and more?
Work around policy and strategy
that can embed support for young carersoutside of program delivery.
(27:46):
For the hundreds of thousandsof young carers that exist in Australia,
how do we reduce inappropriateand unsafe levels of care?
So how do we look at our really young kids
providing a lot of hours of care,and how do we go?
We need to provide you more support,and we need to really wrap you around
with support in a way that feelsuncomfortable for us to talk about
(28:08):
because they are so young.
So I think that's what needs to happennext is around education for safe
caring practices and a reduction ininappropriate and unsafe levels of care.
That's that's great advice.
And Maddie, thank you for your time.
Is there anything else you'd like to addor finish on?
I think it's so incredibleto have these conversations
about young carers,and I wouldn't underestimate how powerful
(28:30):
just a conversation about a young care is.
When a young care is this and goes, okay,there are people in the right rooms
and the right environments
like New South Wales Parliamenttalking about me and making me feel heard.
I think the power of that is much greaterthan we ever give a white for.
That's great. Thank you.
Thank you so much for yourtime at Riverside. Thank you.
(28:53):
For.