January 14, 2025 • 53 mins
In this panel discussion recorded on 14 October, 2024, the opening day of National Carers Week, we bring together a diverse group of experts and advocates who shed light on the challenges and joys of caregiving. Hosted by Janson Hews, the panel includes Elena Katrakis, CEO of Carers NSW, and Jacqueline de Mamiel, Young Carer Voice Lead at Little Dreamers Australia.
Elena, with her extensive experience in advocating for vulnerable communities, shares insights on the evolving role of carers and the systemic support needed. Jacqueline, a young carer herself, offers a unique perspective on the balancing act between care responsibilities and her own ambitions, while highlighting the importance of support systems for young carers across Australia.
Key takeaways include:
- The profound honour of caring for those who once cared for us
- The complexities of caregiving, both the positives and the challenges
- The realities of caregiving and the need for better resources
- The importance of support networks
Listen to this powerful discussion to hear stories, advice, and reflections that are integral to understanding the critical role of carers in our communities.
The Care for Carers podcast is produced by the Carers Inclusion & Diversity Group at the Parliament of NSW. The Carers group aims to celebrate, educate and highlight the complex responsibilities that come with caring for someone with a mental illness, disability or for an older person.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:03):
Thanks for coming along, everyonethis Monday morning.
Big welcome.
I'd like to start by acknowledgingthe traditional owners of the land
on which we're gatheredtoday, the Gadigal people of the Eora nation,
and pay respectsto elders, past and present,
as well as recognizing the various landson which people are coming to us
online today.
And people were a streaming online.
It's also importantto recognize the First Nations people
(00:26):
during National's Cares Weekwith the original carers in this country,
and they've continued to do so for 60,000plus years.
I think that's really important to notice.
I'm very excited to welcome youto New South Wales Parliament
for the beginning of National Carers Week.
This is the Olympics of Carers,so we're very excited this week.
Each of the executive staff
who have an inclusion and diversityportfolio, mine's carers.
(00:48):
I'm very excited and honoured,
to to take on that portfolio.
The inclusion and diversitygroups are an integral part of the
the value and diversity of experienceand insights of the people
who make up our communities of New SouthWales.
The carers and the Carers Inclusionand Diversity Group aims to celebrate,
educate and discuss the crucial rolethat carers play in our society.
(01:11):
Our focus is also in improving
the workplaces for employeeswith caring responsibilities.
We're also launching a podcastseries called Care for Carers this week,
which is really exciting.
Stay tuned for more information.
You'll see that on all your platformingstreams,
where we hear from guest speakers,including parliamentary staff,
about their experience as carersand the wider community.
(01:31):
And just for reference, we're
recording today's session,which will be episode four.
So intros today, we're
joined by some very esteemed guests,our audience here and online.
In particular, I'd like to recognizethe Honorable Jody Harrison MP,
MP, Minister for women, Ministerfor seniors and Minister
for the Prevention of DomesticViolence and Sexual Assault.
(01:51):
Minister Harrison
has ministerial responsibility for carers,which is what we're here for today.
And thank you for joining us in todayand what is going to be a very busy week
for you, no doubt.
And, thanks for making the time.
So our speakers today, a big,welcome, Elena and Jacqueline.
So we're also joined by,
Elena has been the CEO of CarersNew South Wales since 2006.
(02:15):
She has a strong commitmentto social justice and extensive experience
advocating on behalf of disadvantagedand vulnerable groups.
Elena began her careeras a social worker.
Prior to joining Carers New South Wales.
Elena worked in the public sectorfor over 20 years,
primarily in the areas of mentalhealth and homelessness.
Elena is a member of the New South WalesCarers Advisory Council,
(02:37):
a member of the New South WalesAging and Disability Advisory Board
and the anti-discriminationNew South Wales Board.
Elena was appointed UTS IndustryFellow to the centre for Carers Research
for the period of August 2019until June 2021.
A big welcome.
Elena
Jacqueline, to my leftis, a young is the young carer voice
(02:59):
lead at Little DreamersAustralia and Little Dreamers in case
people don't know is Australia's leadingorganization supporting young carers.
She has provided care for
her two brothers with disabilitiesfor as long as she can remember.
She's also been caring for her mum.
When she was diagnosedwith breast cancer in 2016,
she uses her lived experienceto raise awareness
(03:20):
about the vital role of unpaid carers
and to advocate for improved supportfor other young carers.
Jack balancesher, caring role alongside studying
politics and Chineseat the University of Melbourne.
Can everyone pleasemake Jacqueline and Elena welcome?
(03:40):
And a big
thank you to to Jacqueline,who's come up from Melbourne this morning.
And a shout out to her dadI believe is in the back.
So, that's an important recognition.
So just to kick things off, hands up.
If you've ever taken upa carers role in the audience.
Okay.
Hands up if you
imagine you might be taking on that carersrole at some point in your life.
(04:01):
Okay, so interestingly,
we've got about 11% of Australia'spopulation who are currently carers,
which is, you know,
2.86 million odd people in those numbersthat we've just seen in the audience.
Is very reflective that,I mentioned, the portfolio that I have,
I'm very honoured and proud to be taking upthis portfolio at Parliament.
As someone who has taken on a carers role,when my mother
(04:24):
was diagnosed with pancreatic cancer,
and I think I like this quote Tia Walker.
To care for those who once cared for usis one of the it's
one of the highest honours.
And I think that rolethat quote resonates with me because,
for some people and
people have recognise that,caring responsibilities,
(04:45):
are often something that's thrustupon you or something that you seek out.
And I think, that sort of is a testamentto the diversity of what we've got here.
So what I can tell youis that these discussions are important,
and I thank you today for getting alongto this important discussion
and joining us.
So to kick things off,can you tell us a little bit, both of you,
(05:06):
about the work you do in your organizationand what a day in the life looks like?
I'll throw it at Jacqueline to commence.
Absolutely.
So I work at Little Dreamers Australia,like you mentioned.
And my days, they're very varied.
So I'm at universitystudying politics and Chinese
and working at Little Dreamersaround that.
And my role there at the momentis establishing a young carer
(05:26):
advisory committee.
So LittleDreamers is founded by a young carer.
But she's now 31and that means she's an adult carer.
And it's really important to herto make sure
that young carer voice is still representedthroughout the organisation.
So in my role at the moment, I'mresearching existing advisory committees
in other youth organizations
to find a modelthat we can adopt at Little Dreamers
(05:48):
and then at the end of this year,I'll be sending out applications
and getting together a team that can helpwith policy development
and program delivery to make surethat Little Dreamers is really meeting
the goals and helping young carersto meet the needs that they need.
So to make sure that the supportis really tailored
to the unique perspectivesof young carers.
Yeah, that's great. And
(06:10):
you mentioned little Dreamers.
Maddie joined us
a couple of weeks ago at a board meetingthat Elena was on as well,
and we managed to grab herfor half an hour to be our third guest
in the podcast series so we can hear moreabout Little Dreamers on line as well.
Elena, could I hear a little bit moreabout some of what a day in the life
looks like for yourself?
Well, God, talking about carers New SouthWales, just to give a bit of background
(06:32):
because I think my days are pretty boring.
No, they're full of
So much excitement, particularly this weekbecause it's National Carers Week.
So Carers New South Wales is the peaknon-government organisation for the carers
in New South Wales.
We workas part of the National Care Network.
So there's,
you know, carers, associations,organisations in each state and territory.
(06:53):
And we're all members of Carers Australia,which is like
the national peak in the national advocacyvoice, to the federal government.
So our focus really is on improvingthe lives
of all carers in New SouthWales, and carers.
Absolutely.
At the center of everything that we do.
And we havea number of internal structures
that are set up to make surethat we're hearing from that carer voice.
(07:16):
We do have a young carer advisory groupthat we have a model there that we could
Thank you.
Liase with you about,which we've had for
for a little while now,which has been fantastic.
So we work with all carers, regardlessof their age, where they located,
what their caring situation might be.
And, we offer a range of differentservices and supports,
(07:39):
but also, sort of systemic advocacy
policy, and then specific programs
that we might be funded for that maywe may not deliver on a statewide basis.
We might deliver them in particularlocations, depending on the funding.
So things that we do, we do,
policy analysis and systemic advocacy.
(08:00):
We do a national carers surveyevery two years.
Results of the 2024 National Care Surveyhave been launched today.
We also
we have a carer knowledge exchange.
So we bring that research together with
carers and researchersand policy makers and practitioners
(08:20):
so that we're really translatingthat research into practice.
It's not just something that'ssitting there, it really informs our work.
We also have lots of newslettersand, online resources.
We deliver education and trainingto carers and service providers
on a whole range of issues.
We are a delivery partnerin the care gateway, which is the national
(08:44):
sort of one stop shop for carersfor support and services.
And we deliver thatnot across the whole of New South Wales,
but in the region knownas New South Wales 4 which is Central
Coast Hunter, New England and North Coast.
So Mr.
Harrison's region,we cover that for care gateway.
And then we've got a whole lotof other smaller projects, some
(09:05):
that have focused on,
caring,
getting carers ready for, disasters.
So particularly in the region that we docover for care gateway where there
the floods in northern New South Walesbut also fire season that sort of thing.
Making sure that care is inthe people that they care for are prepared
because often they are a kind of sometimesforgotten about in some of those,
(09:28):
disaster responses.
So we've got some particular tools,and things that we're developing there and
working with a couple of local communitiesspecifically around that.
We also support carers,
that are balancingpaid work and employment with care.
And we also have a nationalas part of that.
We have a national, accreditation programfor carer friendly workplaces.
(09:50):
So there's a lot that we do,
not to want to take too
much time,but my, my day would look, like,
you know, obviously carers New South
Wales has a board of a volunteer boardof directors that meets every two months.
So I do a lot of workreporting to the board, preparing things
for the board, getting the board,you know, across what's happening,
what carers are telling usand what our focus should be.
(10:13):
Delivering on Carers New South Walesstrategic plan.
But also, you know a number the committeesand things that I'm on, that Janson
mentioned and particularly New South WalesMinisterial
Advisory Council for carers,
and a whole rangeof other sort of committees and things
like that. So,
yeah, that's kind of my days,a lot of meetings, a lot of meetings
(10:36):
with staff, and a lot of meetingswith, with carers,
and also meeting nationallywith the other state and territory
CEOs from the other care organizationswe meet on a quarterly basis,
which is also good, so that we've gotsome consistent sort of policy
and workhappening, across the country as well.
That's great.
And hearing about thethe week that you have a head.
(10:58):
It's it's very much a New South Wales.
It's similarto Parliament of New South Wales.
So the amount of, outreach and work
that you do in the widercommunity is really, really compelling.
Could I just takea really broad perspective,
as part of that and just ask whatcaring means to you in the broader sense?
So, look, I, I mean, I
personally have, cared for my parents,
(11:22):
and when, when I was young,
my mum, you know, sort of experienced and,live with depression.
So, in many ways, I was a young carerwithout at that time at all knowing,
about that.
But I think,
really we,
I suppose look at,
(11:42):
the wide range of experiences,
that carers tell usand that occurs in New South Wales.
We've got the privilege of working withand hearing from,
you know, lots of different carers.
So I think one of the thingsI think that is,
pertinent to the caring role,I think what a lot of carers tell us
are theyexperience is the complexity of caring.
(12:05):
And often it's that juggle
the carers individually,no matter who they caring for
and what sort of service systemthey're trying to navigate,
to get the best support that they canfor the person that they're caring for.
So I think that's, you know,I think caring there's lots of positives.
I think we'll probably talk about thata little bit as well.
But there's alsothat complexity to caring.
And I think part of the key tothat is having that information.
(12:30):
Particularlyfirstly, I suppose the recognition
that you are a carer, and knowingwhere to get support and services.
So I think it's navigating some of thatcomplexity, can be very challenging.
And I think even caring for my parents,
and navigating the, my aged care system,
which was, you know, a couple of years agonow, and even working in the space,
(12:52):
just seeing what a challenge that wasand also in balancing work and care,
finding that time to be able,you know, hold onto the find for,
you know,
40 minutes till you get put throughto someone that then you're going to get
put through to someone elseand maybe someone else before then
the line goes dead.
So it's all of those kind of things,I think
having some personal experience of that,but also hearing from,
(13:14):
a lot of the carers that we workwith around some of that complexity.
That's it's very true.
And I'm that was definitely my experienceand thinking and reflecting on
some of the, the guestson our, on our podcast and a shout out to,
to Paul and Stacey as well as Maddiewho have been on that recently.
It is true the complexity is thereand just the sheer,
(13:34):
determination and problemsolving that carers display
is something that I've,I've recognized is really consistent.
You just need to come upwith those solutions and get to, the,
the systems that existand utilize those in a great way.
So, I'm interested to knowand, and Jacqueline, you've had,
lived experience in that regard.
What's what's one of your most powerfulmemories of caring that you can share?
(13:57):
I was thinking about this this morning,and I think it's quite hard
because as a young carer,
a lot of the times that you're
really required to step upand be there for the people you love is
when they're not well,
if they're having a health emergencyor something's not going right for them,
where you really need to be thereto fulfill your role.
But there is one really special timemy brother recently was in hospital
(14:17):
having surgery
and my mum said, you know,could you go and be there when he wakes up
from the anesthetic?
And he's 24,so he's five years older than me.
And I think he would have thought it wasa bit uncool that I was going to be there.
But I went for my class at university,took my laptop,
and I was like, sat up in his room
watching a lecture, waiting for himto be wheeled in from recovery.
And he was like, what are you doing?
(14:38):
You like.
And I was like, oh, you know, likemum just sent me to check up on you.
And so I was therewhile he sort of woke up
and ordered his dinnerand all those things.
And once he was settled and I was leaving,
I was like, you know,do you need anything else?
And he kind of mumbles and he saidsomething and I was like, sorry, dude.
Like, what do you want?
And he was like, can I have a hug?
And I was like, yeah,of course you can have a hug.
So I think the most special thing for meabout being a
(15:02):
carer is really being ableto support the people I love.
And, you know, being in hospital, havingsurgery can be quite a nerve wracking,
you know, scary process.
And even at 24, he's
six foot 11, he's really tall and doesn'tfit all over the hospital beds.
You know, he's like, oh,my mum shouldn't be worrying.
Like I'm fine,but everyone needs a hug sometimes,
(15:22):
you know, when you're going through things
and I think it's really special to be ableto provide that for the people I love.
That's great.
And we sort oftalked about the current landscape,
and we, we saw testimony in the room,and we've got an aging population.
So it becomes all thatmore real as the years go by.
We looked at the National Carers surveyand there's some great numbers here.
We had 8000 respondents in 2020,
(15:45):
7000 in 2022, obviously,probably more in 2024.
Over 10,000 in 2024, which is great.
Which is great. So there's a there'sa really great level of engagement.
You're able to share some reflections on
some of those recent reportsand what impact it's had for for yourself.
Yeah, I mean look, carersNew South Wales has been doing
surveys really since
(16:07):
we began, so back to 1975, I have to say,
Kerry's New South Wales really was,created on the back of a survey.
There was at that time,
there was, sort of war veteransand war widows and things like that
that were talking about,caring for their partners.
And in that in those days, it wasmostly women caring for their husbands.
(16:30):
And it kept coming up as a concept. So,
the founders of Carers New South Wales,
at the time, Clay Stephensonand everything,
got some funding from Council on the Aging
and did a survey on carers in 1975.
And I have to say thatwhen you read that early report
(16:52):
which was called dedication,which I think is on our website,
look, a lot of the issues and challengesfor carers are the same.
And they come out of all of the surveysthat we've done.
So we've done surveys since 1975on and off over, you know, many years,
we've made those surveysmuch more rigorous in, the last number.
(17:13):
So probably ten years, where we've hada, you know, research subcommittee and,
other academics and things informingthe development of those surveys.
And I think a lot of the impactsand challenges that carers tell us
are the same. Now, that doesn't meanthat things haven't changed.
It just means that caring is alwayspart of the community.
And people will take up caring roles.
(17:35):
It's part of family.
It's part of the structure of societyand and how we operate.
And I think those impacts,
continue
now there's different thingsthat carers can access over that,
you know, almost 40,almost 50 year, period of time.
But some of those impacts are the same.
And a lot of that goes backto the core of recognition,
(17:59):
which comes through all of the surveysand information.
Because if carers don't recognizeor see themselves as carers
and they see themselves as you know,
we've heard it before, probably, butthey see themselves as, you know, mothers,
fathers, partners, daughters, sisters,you know, whatever.
They don'tnecessarily see themselves as carers.
And if they don't see themselvesas carers,
(18:19):
they don't access support for themselvesbecause the focus really for carers
mostly is about making surethat the person that they are caring for
is receiving the best care and supportpossible and often then
without thinking about themselves,
and caring can have an impact.
So I think it's that
those kind of impacts that we seeand that we've seen all the way along,
(18:42):
those surveys help to inform our advocacyso that we can then,
you know, advocatefor different services and supports.
And we've certainly seen overthat period of time, as a result
of that advocacy,a change in the service system,
a change in the offering of supports,the introduction of legislation,
(19:03):
which we had
here in New South Wales in 2011,which was something that we advocated for.
So a lot of that has come outof, that evidence base
and those surveysand hearing directly from carers.
That's really that's really interesting.
What about, how has being a carer changedyou as a, as a person?
And I think, you know, what might be onecarer's superpower that you might have.
(19:28):
I mean, I feel like it's kind of changedeverything.
I sort of naturally took on a caring rolefrom a very young age.
So I have a twin brother and an olderbrother who both have disabilities.
And being a twin, I was always, you know,at the same life stage as my brother.
We were at school togetherfor the first few years at Kindi together,
and I was sort of his go to support personlike teachers at kinder at school.
(19:50):
If he was struggling with emotionalregulation or something like that.
I was like,
the secret weapon, like, don't worry,
we'll just go get Jacqueline out of herclass, which is really challenging.
But I think it taught me a lot of things.
The main one being resilience.
Being a carer is definitely challenging,and it means that
there were lots of thingsthat didn't go to plan when I was younger,
(20:12):
like disruptions to my living situation,a lot of responsibility, meaning that
I missed out on like social opportunitiesand more of the fun things.
But my mum and I, asmy mum, is the primary care in my family.
It means the way I really tieand every time there is something big,
we can sort of bond over thatand know that we got through it together
and that even though lots of hardthings have happened,
(20:34):
we're still here,we're still doing cool things.
So it really gives you hopethat you can sort of bounce back after all
of the challenges.
Yeah, I
think, I think the resilience is somethingthat's definitely come through.
One of the things you mentionedthere around you, sometimes your mother,
sometimes your partner,
I'm really interested to hearfrom either of yourselves.
When does that differwhen you become a carer versus having that
(20:57):
relationship with that individual?
Look, I think, I mean, from what we knowand what we see,
it's when you're taking on thingsoutside of just being a mom.
And there's, there's additionalresponsibilities is additional focus.
It's increasingthat focus and that, involvement.
(21:17):
And that person really needs youto be able to do those things for them.
And where those support needs might be,because of, you know, disability
and these different levels of disabilityand different levels of disability
needing different inputs of care,not everybody with a disability needs,
you know, 24/7 care.
But there is degrees in all of these.
(21:40):
So I think
it's when those things, also impact you.
So you're not able,you know, if you, if it's parental care
and you've got a childand you bring up a child,
that doesn't have a disability,we know what that's,
you know, a lot of usknow what that's like,
and that's timeconsuming and everything else.
But it's kind of part of, what you wouldexpect bringing up children,
when there's additional support needsand you're going above and beyond
(22:03):
and you are spending that time and it'sreally impacting on your ability to,
do day to day things in your lifewhere you've got to balance
those different things where that person'sneeds are actually, you know, often
more of a focus than your own needsor the needs of other people
within your family.
Because of the nature of they need,
(22:25):
because they might need, accessto different supports and services
that you also then have to, to navigateto get that additional support.
So I think, you know,it can be different for different people.
About when that kind of kicks in.
And I think people don't necessarilyalways realise that they’re there.
And I think part of that is,
(22:46):
again, I know I keep sayingbut back to that recognition piece,
and I think particularlyand not wanting to take away from Jac
and her experience of young carers,but some of the young carers and I know,
you know, in terms of recognitionas a young carer,
often young carersand we've had people that we've worked
with thathave gone along with their parent,
(23:07):
you know,and there's a lot of young carers
in single parent households as well.
They've gone along with their parentto a medical appointment.
Their parents had a medical condition.
And, you know, the GPor the medical practitioner
hasn't thought about that person's needs,the young person's needs at all,
and just assume that theythey're doing that, you know,
(23:29):
and until then, there'sthat kind of recognition
from those broader service providers,
where people can then get that support,and then have that recognition.
So there's, you know, it's it'svery varied.
But I think for a lotof young carers, Unhidden,
and it's
about that broader
understanding across the service systemto really bring that out,
(23:52):
to be able for people to actually say,
actually this is impacting meand that's not a bad thing.
That's okay.
And it's okay to ask for support.
Absolutely. Yeah.
I really agreewith what you said. Growing up.
I didn't know that I was a young carer.
I never even heard the termuntil I was 16.
And I became involved with Little DreamersAustralia, where I now work.
I was firstreferred to their tutoring program
(24:14):
because my caring role took a big impacton my education,
my ability to attend every day,sort of the energy
I had to give to my educationbecause of the toll of my caring role.
And before then, I'd been involved withsome siblings programs which are there
to support people who are the siblingsof someone with a disability.
But there wasn't recognition that you asthe young person were providing care.
(24:36):
So I think that line between, you know,the relationship with a family member
and being a carer is really crossedwhen the person you have
the relationship with has extra needsthat aren't being met by a formal care
service, respite, support,something like that.
So for me, my brothers didn't have enoughsupport, you know, 24/7.
So I really did step in to take that role.
(24:58):
And I think it's important to identifythat young people
have a really important roleto play in their family.
And they're not justthey're being impacted sort of
by witnessing the eventsthey often have a big responsibility for,
like the administrative sideof accessing services,
help with responding to emergencieslike you really sometimes are.
(25:19):
Parent.
If I had to take a role that lots of youngpeople don't usually have.
That's really interesting
and a very complex, world to negotiate,
I really I'm really interestedto see how caring has evolved over time.
And you sort of mentioned somesome compelling moments with the studies
in 1975, changesin legislation, in New South Wales.
(25:39):
Can we think about into thinkinginto the future now?
It's very hard to do.
And pandemics aside, what will caring
look like in 2030, do you think?
And that feels like it's only six yearsaway, but it could be a lifetime away.
How have we changed?
We perceive caring.
How might we look?
I thinkbecause caring is part of the community.
(26:00):
And everyone, you know, at some pointis going to be either cared for a carer,
you know, that will caring itself changesignificantly?
Probably not.
I thinkcaring is always going to be there.
And they're always going to be familyand friend, carers within our community.
They're not going to go away.
(26:20):
I think what will change and what I think
you want to seein the the end goal is that,
it's much more,
understood more broadlyby the community and accepted,
it's just part of the naturethat if you're going to work,
you might need to behave some sort of flexibility
because
you might need to respond to somethingbecause you're caring for your parents or
(26:43):
caring for, you know, a childwith a disability that needs some other,
that has other support needsand that your workplace
has that flexibility and it's embeddedas part of the normal normalized response,
if you like.
So I think it'sabout the normalization of care,
and the understandingof care across the community.
But it's also then,
(27:03):
the recognition by both carersand the community.
And it's also,
the broader service system and supportsavailable to carers
that the impacts of care is understoodand that there is that capacity
and there's that service system responsethat is specifically there for carers,
and carersand their needs in their own right.
(27:26):
Absolutely.
I think that community awarenessis the thing
I hope to see changemost in the next six years.
I think we're slowly getting there,but I know from my experience advocating
for the support of young carers, oftenwhen I would speak at like school
or if I post on social mediaabout something I'm doing
to raise awareness for young carers,I get a lot of messages being like,
(27:47):
well, I think I might be a young careror I hear a story like yours, Elena
That is, you know, I grew up as Young Carebut I didn't know it and I was 16.
Like I said,when I was referred to little dramas
and that'swhen I learned what a young care was.
And, you know, 16 was like, not too late.
Like it did meanthat I had support throughout my VCE.
So the end of high school,
(28:08):
that's our Victorian Certificateof Education for you, New South Welshman.
But yeah, so I did get supporttowards the end of high school,
but that support would have beenso valuable earlier in my education.
You know, in primary school when I wasreally struggling to attend every day.
And I had a lot of anxietyabout leaving home.
I lived like right across the streetfrom my school, like you could see
(28:30):
from my bedroom window by school,
but I'd be really nervous aboutgoing to school and leaving my family.
And even thoughI just had to cross the road.
So I think that support would have beenso helpful for me earlier in my life.
And I wish that people who messaged mesaying, I think I might be a young carer,
I wish I would start younger, likeI hope that I don't have to be the one
(28:51):
personally to bringthat sort of revelation to someone's life.
If there were people, like you said, like,
you know, doctors, communityservices, people at schools,
extracurricular activities,
it would be great
if we raised the awareness to the levelthat other people in young people's lives
could be the one to tell them, you know,I think you might have a caring role
(29:11):
rather than it be something that they haveto sort of figure out on their own.
And I like the, the it sounded likethere was a lot happening there at that
time.
And the term you had parental firedis, is a really interesting one.
What advice would you give to your 16 yearold self?
Obviously,that was a very formative period.
And that same advice is probably relevantto anyone else who might be embarking
(29:31):
on a caring role.
I think it's just to have hope,and that's really hard.
But when I was younger,I really couldn't see a future for myself.
At the end of year nine,I stopped attending school for a term.
I was really struggling with my own mentaland physical health as a result
of my caring role, and I really wasn'tengaged in my education.
And I could, like I said to my mum, oh,like, I'm just not going back to school.
(29:54):
And she was like, over my dead body.
Yeah, you go back to school.
And then I won a scholarshipto an independent school in my area,
which was really supportiveand accepting of my caring role.
And then upon graduating high school,I won a scholarship that covers
my accommodation at the Universityof Melbourne, which allows me to sort of
take a step back from my caring roleand really focus on my education.
(30:15):
So if you persevere,
there are opportunitiesand people out there that will help you.
But that was a big turning point for me.
Like,it really could have gone either way.
I have stayed engaged
or I just sort of step backand thought it was all a bit too hot.
But it is worthwhile to keep goingbecause you end up talking at Parliament.
Yeah, that's good advice.
But I think, I mean,
part of that sort of community,broader piece is that understanding
(30:37):
in the school system.
And I think we've and I know the ministerjust left that she's aware
of some of the challengesthat we've experienced trying to get,
some of thatunderstanding across into the schools.
And I know Little Dreamsdoes a lot of work, there as well.
But it's that impact intrying to have that
understanding acrossthe schools because there's,
(30:57):
there's at
least one young carer in every classroom,if not more.
I know you little dream is quite,I think, 2 to 3 in the classroom
because we know the one.
But from the kind of stats, the coursestats that we have at the moment
about wanting, you know, there's at leastone young care in every classroom.
And, those young carers also grow up
into often the adult carers.
(31:20):
And if you have that early interventionand that support,
at that point in time, he does makea huge amount of difference, as Jack said.
And that balancing,you know, education, care,
gives you some of those skillsin balancing work and care, you know,
as you go forward, but also gives youthat I suppose, permission
(31:41):
to also seek assistance, which, you know,I think is often hard for people.
Definitely.
What are some of the assumptions
that we need to challenge about carers?
Carers?
I mean, I've just got carers.
We know tell us that they don't like being
called heroes and angelsand all that sort of thing.
(32:04):
We often hear that, and I know people meanwell when they say it.
I know I put a post on somethingthat I did,
something the other day on LinkedIn.
And yeah, a couple of comments.
Where are
carers are heroes and the kind of,oh, you know, and it's not to take away
from what they do,but I just feel like it.
We know, there's often assumptionsabout them being heroes and,
and that sort of stuff.
(32:24):
And we know that carers don't like that.
At all. Maybe sometimes. Sometimes. Yeah.
I mean, I think, I think for young carersand I think young carers in superhero
kind of thing and that sort of stuff.
And I think there's a different, there'sa different kind of thing, but it's, it
can sometimes be a little bit patronizing,I think for carers and often I know,
lots of peopletalk about them in that kind of context.
(32:48):
And we know the feedback from carersis that they really, generally,
really don't like that.
So there's that kind of assumption there.
But I think there's also,
the assumption sometimes that,
you know, carers oftenget conflated or confused
with paid care workers,
carers, support workerswhen people talk about carers,
(33:09):
say under the NDIS,they're often talking about paid
paid support workers.
But people generally just got to carers.
It's not the same carers.
It can also be conflated with childcare.
And you know, parental careand things like that.
So I think sometimes some of thoseassumptions that we're talking about
(33:32):
other carers, it's not the same
because we're talking about familyand friend carers that largely are unpaid.
Yes, they may receive a carerpayment care allowance.
But they're not working in a paid capacityin the care role.
And so sometimes those assumptionsI think can carry over into the media,
how carers are portrayed, how they spoken
(33:52):
about how they're referencedin different stories.
Even in, you know, I suppose, televisionshows and things like that, they can use
the term interchangeably with carersupport workers and paid care workers.
It takes away then from
the uniqueness if you like, around familyand friend carers.
Yeah.
And would you say in the,in the young person's space,
(34:14):
what are some of the unique challengesfacing young carers
and maybe some of the assumptionsthat you'd like to see challenged?
I think a big assumptionI've come up against is that your caring
role is like a defined period of time,and for some people it is.
When I was caring for my mumwith breast cancer, she was diagnosed
in 2016 and had surgeryand started treatment that year, and then
(34:34):
she was on medication for five yearsbefore she formally entered remission.
So that sort of was like a six yearperiod.
Like, I don't say that I care for my mumnow because she's in remission
and able to support herself and, you know,back in employment and things like that.
But with my caring role for my brothers,it really is ongoing.
You know, their disability is a life long.
And even though I don't liveat home anymore, so I'm less like
(34:57):
uncle,I'm very much still in a driving distance.
And I do get the call, you know,can you do this certain thing or.
I have my twin brother, livesregionally in an area called Mansfield,
which is sort of like a 2 or 3 hour drivefrom where I am.
And a couple of times, you know,I've had to drive up there, to either
drive my brother back or,you know, pick my mum up
(35:18):
because she's been visiting there.
So it really is an ongoing role.
And I think the assumption that, you know,you need support for a certain defined
period can be really detrimentalbecause the supports that I needed
when I was in year three at school,are still helpful today.
You know, I still am asking for extensionsand assignments and, you know, sort of
(35:38):
empathy and understanding from my teachersnow that in my lecturers at university.
But they really, ongoing care requirementsthat young carers.
And then as I transitioninto being an adult care one day,
you know, I still will need that supporteven though it has been a long time.
Yeah.
And that's very interesting.
And I'm thinking about the peoplein this room,
who have managerial rolesor the managing staff.
(36:02):
What are some things that,that, workplaces can do to better support
people that have caring responsibilities?
Look, I think it's about flexibility.
Really, it's about.
And I think that's one of the, you know,if anything good came out of Covid, it's
flexibility in the workplace,the capacity to be able to work from home.
That's really worked in favour of carersthat are balancing paid work
(36:23):
with informal care.
So that has been really positive.
So I think it's about the understanding,the recognition, and understanding,
you know, what it is like to be a carerthat is doing that balance
and that juggle, having the flexibility,but also,
you know, recognition in terms of leavebecause often when carers
have to take carers leave, it comes offthe personal leave, sick leave,
(36:46):
that sort of thing,then there's no time for themselves
or when they actually need itfor themselves. And we also know that,
the healthof carers is impacted by caring.
They need their own sick leave as well.
So I think it's about lookingat some of those broader,
availabilities of leave and some of the,
the corporates that we've worked with
in that have got accreditationunder the carers employees
(37:09):
sort of carer friendly workplaceprogram have got different leave,
you know, opportunitiesand things for carers.
They've identified that they've gotreally good policies around leave.
And they've really expanded that out.
So not all of them,
but you know, different ones have donedifferent, different things to adapt.
The leave requirements.
So I think it's about
(37:29):
that flexibility and leave,but it's also about having your manager,
whoever you reporting to, whateverthe level that person might be
having that understanding about carers.
So that is a it's differentto parental leave.
You know, because often in the workplaceand we hear this a lot,
you know, it's like, oh yes.
You know Johnny Scotties concert,you know, is it okay
(37:51):
if I finish up at three and do thatand whatever.
Yes. But it's not the same for someonethat's got to go off
and maybe go and visit a nursing hometo see if that's where they might want to,
you know, have to, you know, havethe parent, go into residential aged care.
So it's making sure that there's thatflexibility, understanding, recognition.
(38:12):
And that's really got to be acrossall layers within
any organization that employs staff.
You can have an understanding manager,but if the policies
within the organization don't back it up,then it's not going to be sustainable
or it's going to be that you know,that person
moves on to another role,you need it embedded.
And that's what we seein a lot of the accredited employers
(38:33):
that they havethose layers of policy procedures.
And they actually talk the talk,these things
available on people's websites.
There's access to different services.
There's celebrations for thingslike Carers Week and that's acknowledged.
And it really is embeddedas part of the practice
in a whole range of different layers.
But flexibility, recognition and capacityfor the care life.
(38:58):
That's good.
And then in your context,it is possibly even more complex
because you've got the workplace,
then you've got different schoolsettings tertiary, primary, secondary.
Yeah, I think it's especially hard foryoung people because I'm a casual worker.
So I didn't get any leave.
So if I miss a shift or I can't come inthat week because of my caring role,
I'm not getting paid.
(39:19):
So I'm only paid the hours that I'm there.
And I think, like you mentioned,the embedding, the training
and the understanding really doescome down to staff awareness.
And I think as a young person, it's hardbecause a lot of young people are employed
in retail and hospitality.
So my first official job was at BakersDelight and my I was 15,
(39:39):
my manager was 16.
So I was like in year ten,my manager was in year 11.
Yeah, sure. Like that.
They’d never heard of what a young carer was.
So that's not really a conversationI can have with like
maybe a 16 year old, like I was 15.
Depends. When their birthday was.
You know, it's kind of hard.
And I think organisationsreally need to take that on
(39:59):
at sort of a manageriallike top senior level to make sure
that the managers in those roles are ableto support carers in the workplace.
And I think that flexibility is reallyimportant, especially for casual workers,
because you don't have that paid leaveentitlement to go and do your caring role.
Yeah, yeah. That's interesting.
And just we've got another,
(40:22):
say five minutes and then we'll,we'll cut to questions from the audience.
But, are you able to share some kindof highlights scoop moments from the 20.
20 2020? Yes.
So I need to really refer to thatbecause it's, Just listening.
But it was it's been launched.
Well, it's been launched todayand there's a webinar at 12,
which I won't miss, but if anyone I thinkwill probably be recording it,
(40:45):
but the,
so the 2024
National Carers survey was doneobviously nationally across the country
with the support of the stateand territory care organizations.
We had, over 10,000
respondents to the survey.
(41:05):
And what really that has come
down to in termsof some of just the highlight findings,
is that nearly 1 in 2 carers who respondedto the National Carers survey said
they didn't feel recognized and valuedby their community or by government.
So again, that importanceof that recognition factor.
So, we're not there yet because you've got1 in 2 saying not recognition,
(41:29):
by both of those areas.
Most respondentswho stated that they were,
they weren't asked about their ownneeds as carers when supporting the person
that they care for to access disability,mental health and health care services.
So again, that focus on your own needs.
And we've you know,
we've all seen examples of, you know, asI said, often young carers or young people
(41:51):
going along with a personwith a chronic, health condition
and not thinking about that personin a single parent household
and just sort of saying,yep, blah, blah, blah,
that going homeand not having that recognition.
So that is still continuing.
This, surveyalso did have a particular focus on,
First Nations carers and young carers.
(42:12):
So around 1 in 3 First Nationscarers told us
that the mainstream servicesthat they access are not culturally safe.
So that's, that's not good at all.
And something that we obviously feelneeds,
improvement there.
And yeah, there's somethat there's some other comments
(42:33):
that will come out around that sort ofin more detail, and more analysis.
And also just in terms of young carers,while half of the young carers
who responded, I did have a teacherwho were aware of their caring role.
Only 1 in 5 had actually receivedextra support at school.
So there was awareness, but it didn'tfollow through with that support.
(42:53):
So it's really important
that there is that additional support,that flexibility that Jack mentioned,
you know, around assignments,getting things in because often
young carers can be seen as, oh, well,you know, either
if they don't know about ita bit lazy maybe.
Or they need to
but you know, they certainly otherwhat's wrong with that care or whatever.
It is about having that understandingand then providing that
(43:14):
support that's relevant.
So yeah, look,
that's just, you know,just a couple of sort of early highlights.
There will be more analysis released.
There will be a full report
from our National Caresurvey released in March next year.
And there's fact sheets at the momenton the New South Wales stats
and, all the state and territory,different stats as well.
(43:36):
First Nations fact sheet,any young care fact sheet
there will all be on our website as wellwhich which everybody can access.
And we also give out if people part of the
what we do with the surveys as wellis that we
work closely with researchers that oftenthey want to go in a particular angle.
So we make our, our dataand obviously it's all de-identified,
but our data availableso it increases and forms
(43:59):
the much broader evidence basefor for all carers as well.
That's great. Thank you for that insight.
Just to to sort of close offbefore we go to the audience.
I really love this quote by CarsonMcCullers.
The closest thing to being cared foris to care for someone else.
And I think we've sort of talked a lotabout the challenges, the complexities.
What are some of the rewards that comeswith being a carer, which that, quote
(44:22):
perfectly captures?
I think it's just the closenessof the relationships that you form
with the people that you care for.
I think being a care for siblingsis quite unique because you still
have like that sibling banterand like fighting that annoys our parents.
But we really do have a closer bond wheredeep down
we know that we're always therefor each other.
(44:42):
And even though we've been througha lot of traumatic things together,
we understand what that's likeis really people who have been there,
you know, with youon sort of every step of the journey.
And they know what it was like.
And I think when there isa lack of awareness about what
a caring role is
and what it's like to live with adisability, the biggest reward is to have,
you know, people built in into your lifethat really empathize with that.
(45:04):
That's great.
I loved having like strong
industry insightthat longer form, account of how
caring has changed and then what it's likefrom a young person's perspective.
I think it's been really interestingto hear
those really diverse perspectives andas well as your own personal experience,
now's the chance if anyonehas any questions from the audience.
(45:25):
Veronica's got a mic at the back there.
If anyone got any questions of the panel.
I was just interestedin the gendered dynamic of carers
and whether you, provide supportto all these male
(45:48):
and non-binary carers as well.
Yeah, absolutely.
Absolutely.
You know, and we've done some,
specific projects,
also looking at the needs of LGBTQ,like the full, community, if you like.
Because I quite some years ago,
there was some, you know, negativefeedback that, you know,
(46:13):
members of that
community might go to a support groupand it's all, you know, if it's
caring for a partner,with dementia, for example,
it was usually a traditional couple,since if you like, male and female,
it was lots of maybe women caringfor their husbands and, you know, same sex
couple were going to that and just didn'tquite feel comfortable, within that.
(46:35):
So we've done it.
We've got a long way to go still,
but we've done quite a lot of workto make sure that we are, very inclusive
of all carersand that there are specific resources,
and, you know, information available.
But also we partner with a whole rangeof different organizations to support
that as well.
Yeah.
Thank you.
(47:02):
Thank you.
That was fantastic.
Thank you so much for your insights. I'm.
I'm really. Interested in.
Your, telling of your journey, you know,through school, early days thinking.
Oh, well, I, you know, you know,disconnecting and then ending up.
At the, the international schooland the support you provided there.
(47:22):
Can you talk a little bitabout the independent school?
Was it sorry,could you talk a little bit about what?
Actually what they were doingthat provided that level of support?
What were the specificsthat really assisted you?
I think that it needs to be somethingsort of formal and written
so that the care of carers,the recognition is consistent.
(47:44):
So for me, at my second high school,you know,
everyone has like their student profile,mine had in there about my caring role.
And then when I had special examarrangements for exams
and things like that, it was somethingthat all of the teachers could access
because it's really taxing and tiringto retell your story every time.
And a caring role is quite personal.
(48:05):
You know, I don't want to have to
explain, you know, my mum has cancer,my brothers have disabilities.
Like we don't have time,like there's a lot of history.
But also I just want you to take meseriously because I told you
as a young care.
So I think it's that ongoing support.
And then my school also really supportedmy advocacy work, which was great.
When I was in your living,I shaved my head like completely bald,
(48:29):
and raised money for Cancer Council.
And I did that at lunchtime on the schooloval.
All my friends were watching likemy principal cut off one of my ponytails,
which is very fun.
And then when I
was in year 12,I did a cupcakes for carers
day, and I sold cupcakes and raised moneyfor Little Dreamers Australia.
And I think the factthat they really gave me that space
(48:50):
to show that this was something that I waspassionate about and their support of me
really meant that I felt, you know,I could be an advocate in my community.
And it also allowed other young carersto feel supported.
Thank you.
Any other questions?
We've got one more.
I can probably do that. That's
(49:12):
I think, so probably the public service
has good flexibility and discretion.
I suppose it's, it double, tripleif I have a question
in terms of, in terms of the leave typesthat are available, you've got obviously
family and community servicesleave, sick leave
and then, you know, the other types toil
(49:33):
stack in the public service especially.
And the reasonI'm focused on the public service,
because often
the private sector will catch upwith what the public service does that
do you think there needs to bea specific type of leave,
to enable more peopleto participate in the workforce?
Because I've got unskilled and skilled
labour shortages all over my electorate,which is 44.5% of the state.
Do you think that it just needs to bea specific type of leave that's offered
(49:56):
to people with a disability?
If so, what should it look like
and what should the threshold befor that carer status?
So I mean, I would sayI think there needs to be carer's
leave is a specific category for carers.
Because I think for the reasonsthat I said before round,
you know, they not,
you know, you take your own sickleave and other things and I, I had work
(50:17):
when I'd worked in the public servicefor all those years.
You do have that that level of flexibilitymuch more than,
outside of the public service.
So I think, yes.
For carers leave, there was an inquiryinto carers leave, you know, federally
last this earlier this year, last year
there's been so many inquiriesI can't keep up with when
and where, but there has beena recent inquiry into carers leave and
(50:40):
it was a bit blurry in termsof what they were including in that.
And it was only lookingI think I know this is being recorded,
so I'll just don't hold meto what I'm saying exactly.
But I think it was sort of focusingon sort of caring for,
older people only.
It wasn't sort of the full gamut of carersleave
(51:01):
and it was quite sort of prescriptive.
It also included sort of childcare leave,so kind of blurred everything.
So it wasn't clearsort of recommendations, but I think
specifically carersleave as its own category.
Yeah.
I think it
really needs to be on an as needed basis.
(51:22):
I think with a caring role it'sso fluctuating.
You know, now that I live out of home,
sort of technicallymy caring role has lessened.
But there are periods where I, I'mreally required to step up and be there.
So I think that carers leave
would have to be somethingthat is available to everyone,
because you really can become a carerovernight.
You know, accidents happen,people get sick, you might need to be
(51:43):
in a hospital supporting a family member,you know, at the drop of a hat.
And I think as someone who has an ongoingcaring
role,I couldn't really sort of opt out of it.
Okay. Like I reckoneveryone will be fine this year.
So even though, you know,we want to be careful to make sure that,
you know, no one sort of taking advantageof the system, I think we really need
to have trust that as caringis such a big part of our society,
(52:05):
lots of people will needcarers leave over time,
and that's a really important thingto have access to.
You know.
That's very true.
Any other questions from the audience?
No. So that brings us to the end.
I just really would like usto have a moment to thank you,
Elena and Jacqueline, for your time today.
Thanks for having us.
(52:30):
It's been a great conversation,and also to recognise the work
that Veronica has done to help myselfand the wider team realise this.
The audio visual broadcast team
to help realise this as welland the participation of yourselves
has been fantastic on National CarersWeek. So big.
Thank you.
(52:53):
Thanks for coming along.
Thanks for coming along, everyonethis Monday morning.
Big welcome.
I'd like to start by acknowledgingthe traditional owners of the land
on which we're gatheredtoday, the Gadigal people of the Eora nation,
and pay respectsto elders, past and present,
as well as recognizing the various landson which people are coming to us
online today.
And people were a streaming online.
It's also importantto recognize the First Nations people
(00:26):
during National's Cares Weekwith the original carers in this country,
and they've continued to do so for 60,000plus years.
I think that's really important to notice.
I'm very excited to welcome youto New South Wales Parliament
for the beginning of National Carers Week.
This is the Olympics of Carers,so we're very excited this week.
Each of the executive staff
who have an inclusion and diversityportfolio, mine's carers.
(00:48):
I'm very excited and honoured,
to to take on that portfolio.
The inclusion and diversitygroups are an integral part of the
the value and diversity of experienceand insights of the people
who make up our communities of New SouthWales.
The carers and the Carers Inclusionand Diversity Group aims to celebrate,
educate and discuss the crucial rolethat carers play in our society.
(01:11):
Our focus is also in improving
the workplaces for employeeswith caring responsibilities.
We're also launching a podcastseries called Care for Carers this week,
which is really exciting.
Stay tuned for more information.
You'll see that on all your platformingstreams,
where we hear from guest speakers,including parliamentary staff,
about their experience as carersand the wider community.
(01:31):
And just for reference, we're
recording today's session,which will be episode four.
So intros today, we're
joined by some very esteemed guests,our audience here and online.
In particular, I'd like to recognizethe Honorable Jody Harrison MP,
MP, Minister for women, Ministerfor seniors and Minister
for the Prevention of DomesticViolence and Sexual Assault.
(01:51):
Minister Harrison
has ministerial responsibility for carers,which is what we're here for today.
And thank you for joining us in todayand what is going to be a very busy week
for you, no doubt.
And, thanks for making the time.
So our speakers today, a big,welcome, Elena and Jacqueline.
So we're also joined by,
Elena has been the CEO of CarersNew South Wales since 2006.
(02:15):
She has a strong commitmentto social justice and extensive experience
advocating on behalf of disadvantagedand vulnerable groups.
Elena began her careeras a social worker.
Prior to joining Carers New South Wales.
Elena worked in the public sectorfor over 20 years,
primarily in the areas of mentalhealth and homelessness.
Elena is a member of the New South WalesCarers Advisory Council,
(02:37):
a member of the New South WalesAging and Disability Advisory Board
and the anti-discriminationNew South Wales Board.
Elena was appointed UTS IndustryFellow to the centre for Carers Research
for the period of August 2019until June 2021.
A big welcome.
Elena
Jacqueline, to my leftis, a young is the young carer voice
(02:59):
lead at Little DreamersAustralia and Little Dreamers in case
people don't know is Australia's leadingorganization supporting young carers.
She has provided care for
her two brothers with disabilitiesfor as long as she can remember.
She's also been caring for her mum.
When she was diagnosedwith breast cancer in 2016,
she uses her lived experienceto raise awareness
(03:20):
about the vital role of unpaid carers
and to advocate for improved supportfor other young carers.
Jack balancesher, caring role alongside studying
politics and Chineseat the University of Melbourne.
Can everyone pleasemake Jacqueline and Elena welcome?
(03:40):
And a big
thank you to to Jacqueline,who's come up from Melbourne this morning.
And a shout out to her dadI believe is in the back.
So, that's an important recognition.
So just to kick things off, hands up.
If you've ever taken upa carers role in the audience.
Okay.
Hands up if you
imagine you might be taking on that carersrole at some point in your life.
(04:01):
Okay, so interestingly,
we've got about 11% of Australia'spopulation who are currently carers,
which is, you know,
2.86 million odd people in those numbersthat we've just seen in the audience.
Is very reflective that,I mentioned, the portfolio that I have,
I'm very honoured and proud to be taking upthis portfolio at Parliament.
As someone who has taken on a carers role,when my mother
(04:24):
was diagnosed with pancreatic cancer,
and I think I like this quote Tia Walker.
To care for those who once cared for usis one of the it's
one of the highest honours.
And I think that rolethat quote resonates with me because,
for some people and
people have recognise that,caring responsibilities,
(04:45):
are often something that's thrustupon you or something that you seek out.
And I think, that sort of is a testamentto the diversity of what we've got here.
So what I can tell youis that these discussions are important,
and I thank you today for getting alongto this important discussion
and joining us.
So to kick things off,can you tell us a little bit, both of you,
(05:06):
about the work you do in your organizationand what a day in the life looks like?
I'll throw it at Jacqueline to commence.
Absolutely.
So I work at Little Dreamers Australia,like you mentioned.
And my days, they're very varied.
So I'm at universitystudying politics and Chinese
and working at Little Dreamersaround that.
And my role there at the momentis establishing a young carer
(05:26):
advisory committee.
So LittleDreamers is founded by a young carer.
But she's now 31and that means she's an adult carer.
And it's really important to herto make sure
that young carer voice is still representedthroughout the organisation.
So in my role at the moment, I'mresearching existing advisory committees
in other youth organizations
to find a modelthat we can adopt at Little Dreamers
(05:48):
and then at the end of this year,I'll be sending out applications
and getting together a team that can helpwith policy development
and program delivery to make surethat Little Dreamers is really meeting
the goals and helping young carersto meet the needs that they need.
So to make sure that the supportis really tailored
to the unique perspectivesof young carers.
Yeah, that's great. And
(06:10):
you mentioned little Dreamers.
Maddie joined us
a couple of weeks ago at a board meetingthat Elena was on as well,
and we managed to grab herfor half an hour to be our third guest
in the podcast series so we can hear moreabout Little Dreamers on line as well.
Elena, could I hear a little bit moreabout some of what a day in the life
looks like for yourself?
Well, God, talking about carers New SouthWales, just to give a bit of background
(06:32):
because I think my days are pretty boring.
No, they're full of
So much excitement, particularly this weekbecause it's National Carers Week.
So Carers New South Wales is the peaknon-government organisation for the carers
in New South Wales.
We workas part of the National Care Network.
So there's,
you know, carers, associations,organisations in each state and territory.
(06:53):
And we're all members of Carers Australia,which is like
the national peak in the national advocacyvoice, to the federal government.
So our focus really is on improvingthe lives
of all carers in New SouthWales, and carers.
Absolutely.
At the center of everything that we do.
And we havea number of internal structures
that are set up to make surethat we're hearing from that carer voice.
(07:16):
We do have a young carer advisory groupthat we have a model there that we could
Thank you.
Liase with you about,which we've had for
for a little while now,which has been fantastic.
So we work with all carers, regardlessof their age, where they located,
what their caring situation might be.
And, we offer a range of differentservices and supports,
(07:39):
but also, sort of systemic advocacy
policy, and then specific programs
that we might be funded for that maywe may not deliver on a statewide basis.
We might deliver them in particularlocations, depending on the funding.
So things that we do, we do,
policy analysis and systemic advocacy.
(08:00):
We do a national carers surveyevery two years.
Results of the 2024 National Care Surveyhave been launched today.
We also
we have a carer knowledge exchange.
So we bring that research together with
carers and researchersand policy makers and practitioners
(08:20):
so that we're really translatingthat research into practice.
It's not just something that'ssitting there, it really informs our work.
We also have lots of newslettersand, online resources.
We deliver education and trainingto carers and service providers
on a whole range of issues.
We are a delivery partnerin the care gateway, which is the national
(08:44):
sort of one stop shop for carersfor support and services.
And we deliver thatnot across the whole of New South Wales,
but in the region knownas New South Wales 4 which is Central
Coast Hunter, New England and North Coast.
So Mr.
Harrison's region,we cover that for care gateway.
And then we've got a whole lotof other smaller projects, some
(09:05):
that have focused on,
caring,
getting carers ready for, disasters.
So particularly in the region that we docover for care gateway where there
the floods in northern New South Walesbut also fire season that sort of thing.
Making sure that care is inthe people that they care for are prepared
because often they are a kind of sometimesforgotten about in some of those,
(09:28):
disaster responses.
So we've got some particular tools,and things that we're developing there and
working with a couple of local communitiesspecifically around that.
We also support carers,
that are balancingpaid work and employment with care.
And we also have a nationalas part of that.
We have a national, accreditation programfor carer friendly workplaces.
(09:50):
So there's a lot that we do,
not to want to take too
much time,but my, my day would look, like,
you know, obviously carers New South
Wales has a board of a volunteer boardof directors that meets every two months.
So I do a lot of workreporting to the board, preparing things
for the board, getting the board,you know, across what's happening,
what carers are telling usand what our focus should be.
(10:13):
Delivering on Carers New South Walesstrategic plan.
But also, you know a number the committeesand things that I'm on, that Janson
mentioned and particularly New South WalesMinisterial
Advisory Council for carers,
and a whole rangeof other sort of committees and things
like that. So,
yeah, that's kind of my days,a lot of meetings, a lot of meetings
(10:36):
with staff, and a lot of meetingswith, with carers,
and also meeting nationallywith the other state and territory
CEOs from the other care organizationswe meet on a quarterly basis,
which is also good, so that we've gotsome consistent sort of policy
and workhappening, across the country as well.
That's great.
And hearing about thethe week that you have a head.
(10:58):
It's it's very much a New South Wales.
It's similarto Parliament of New South Wales.
So the amount of, outreach and work
that you do in the widercommunity is really, really compelling.
Could I just takea really broad perspective,
as part of that and just ask whatcaring means to you in the broader sense?
So, look, I, I mean, I
personally have, cared for my parents,
(11:22):
and when, when I was young,
my mum, you know, sort of experienced and,live with depression.
So, in many ways, I was a young carerwithout at that time at all knowing,
about that.
But I think,
really we,
I suppose look at,
(11:42):
the wide range of experiences,
that carers tell usand that occurs in New South Wales.
We've got the privilege of working withand hearing from,
you know, lots of different carers.
So I think one of the thingsI think that is,
pertinent to the caring role,I think what a lot of carers tell us
are theyexperience is the complexity of caring.
(12:05):
And often it's that juggle
the carers individually,no matter who they caring for
and what sort of service systemthey're trying to navigate,
to get the best support that they canfor the person that they're caring for.
So I think that's, you know,I think caring there's lots of positives.
I think we'll probably talk about thata little bit as well.
But there's alsothat complexity to caring.
And I think part of the key tothat is having that information.
(12:30):
Particularlyfirstly, I suppose the recognition
that you are a carer, and knowingwhere to get support and services.
So I think it's navigating some of thatcomplexity, can be very challenging.
And I think even caring for my parents,
and navigating the, my aged care system,
which was, you know, a couple of years agonow, and even working in the space,
(12:52):
just seeing what a challenge that wasand also in balancing work and care,
finding that time to be able,you know, hold onto the find for,
you know,
40 minutes till you get put throughto someone that then you're going to get
put through to someone elseand maybe someone else before then
the line goes dead.
So it's all of those kind of things,I think
having some personal experience of that,but also hearing from,
(13:14):
a lot of the carers that we workwith around some of that complexity.
That's it's very true.
And I'm that was definitely my experienceand thinking and reflecting on
some of the, the guestson our, on our podcast and a shout out to,
to Paul and Stacey as well as Maddiewho have been on that recently.
It is true the complexity is thereand just the sheer,
(13:34):
determination and problemsolving that carers display
is something that I've,I've recognized is really consistent.
You just need to come upwith those solutions and get to, the,
the systems that existand utilize those in a great way.
So, I'm interested to knowand, and Jacqueline, you've had,
lived experience in that regard.
What's what's one of your most powerfulmemories of caring that you can share?
(13:57):
I was thinking about this this morning,and I think it's quite hard
because as a young carer,
a lot of the times that you're
really required to step upand be there for the people you love is
when they're not well,
if they're having a health emergencyor something's not going right for them,
where you really need to be thereto fulfill your role.
But there is one really special timemy brother recently was in hospital
(14:17):
having surgery
and my mum said, you know,could you go and be there when he wakes up
from the anesthetic?
And he's 24,so he's five years older than me.
And I think he would have thought it wasa bit uncool that I was going to be there.
But I went for my class at university,took my laptop,
and I was like, sat up in his room
watching a lecture, waiting for himto be wheeled in from recovery.
And he was like, what are you doing?
(14:38):
You like.
And I was like, oh, you know, likemum just sent me to check up on you.
And so I was therewhile he sort of woke up
and ordered his dinnerand all those things.
And once he was settled and I was leaving,
I was like, you know,do you need anything else?
And he kind of mumbles and he saidsomething and I was like, sorry, dude.
Like, what do you want?
And he was like, can I have a hug?
And I was like, yeah,of course you can have a hug.
So I think the most special thing for meabout being a
(15:02):
carer is really being ableto support the people I love.
And, you know, being in hospital, havingsurgery can be quite a nerve wracking,
you know, scary process.
And even at 24, he's
six foot 11, he's really tall and doesn'tfit all over the hospital beds.
You know, he's like, oh,my mum shouldn't be worrying.
Like I'm fine,but everyone needs a hug sometimes,
(15:22):
you know, when you're going through things
and I think it's really special to be ableto provide that for the people I love.
That's great.
And we sort oftalked about the current landscape,
and we, we saw testimony in the room,and we've got an aging population.
So it becomes all thatmore real as the years go by.
We looked at the National Carers surveyand there's some great numbers here.
We had 8000 respondents in 2020,
(15:45):
7000 in 2022, obviously,probably more in 2024.
Over 10,000 in 2024, which is great.
Which is great. So there's a there'sa really great level of engagement.
You're able to share some reflections on
some of those recent reportsand what impact it's had for for yourself.
Yeah, I mean look, carersNew South Wales has been doing
surveys really since
(16:07):
we began, so back to 1975, I have to say,
Kerry's New South Wales really was,created on the back of a survey.
There was at that time,
there was, sort of war veteransand war widows and things like that
that were talking about,caring for their partners.
And in that in those days, it wasmostly women caring for their husbands.
(16:30):
And it kept coming up as a concept. So,
the founders of Carers New South Wales,
at the time, Clay Stephensonand everything,
got some funding from Council on the Aging
and did a survey on carers in 1975.
And I have to say thatwhen you read that early report
(16:52):
which was called dedication,which I think is on our website,
look, a lot of the issues and challengesfor carers are the same.
And they come out of all of the surveysthat we've done.
So we've done surveys since 1975on and off over, you know, many years,
we've made those surveysmuch more rigorous in, the last number.
(17:13):
So probably ten years, where we've hada, you know, research subcommittee and,
other academics and things informingthe development of those surveys.
And I think a lot of the impactsand challenges that carers tell us
are the same. Now, that doesn't meanthat things haven't changed.
It just means that caring is alwayspart of the community.
And people will take up caring roles.
(17:35):
It's part of family.
It's part of the structure of societyand and how we operate.
And I think those impacts,
continue
now there's different thingsthat carers can access over that,
you know, almost 40,almost 50 year, period of time.
But some of those impacts are the same.
And a lot of that goes backto the core of recognition,
(17:59):
which comes through all of the surveysand information.
Because if carers don't recognizeor see themselves as carers
and they see themselves as you know,
we've heard it before, probably, butthey see themselves as, you know, mothers,
fathers, partners, daughters, sisters,you know, whatever.
They don'tnecessarily see themselves as carers.
And if they don't see themselvesas carers,
(18:19):
they don't access support for themselvesbecause the focus really for carers
mostly is about making surethat the person that they are caring for
is receiving the best care and supportpossible and often then
without thinking about themselves,
and caring can have an impact.
So I think it's that
those kind of impacts that we seeand that we've seen all the way along,
(18:42):
those surveys help to inform our advocacyso that we can then,
you know, advocatefor different services and supports.
And we've certainly seen overthat period of time, as a result
of that advocacy,a change in the service system,
a change in the offering of supports,the introduction of legislation,
(19:03):
which we had
here in New South Wales in 2011,which was something that we advocated for.
So a lot of that has come outof, that evidence base
and those surveysand hearing directly from carers.
That's really that's really interesting.
What about, how has being a carer changedyou as a, as a person?
And I think, you know, what might be onecarer's superpower that you might have.
(19:28):
I mean, I feel like it's kind of changedeverything.
I sort of naturally took on a caring rolefrom a very young age.
So I have a twin brother and an olderbrother who both have disabilities.
And being a twin, I was always, you know,at the same life stage as my brother.
We were at school togetherfor the first few years at Kindi together,
and I was sort of his go to support personlike teachers at kinder at school.
(19:50):
If he was struggling with emotionalregulation or something like that.
I was like,
the secret weapon, like, don't worry,
we'll just go get Jacqueline out of herclass, which is really challenging.
But I think it taught me a lot of things.
The main one being resilience.
Being a carer is definitely challenging,and it means that
there were lots of thingsthat didn't go to plan when I was younger,
(20:12):
like disruptions to my living situation,a lot of responsibility, meaning that
I missed out on like social opportunitiesand more of the fun things.
But my mum and I, asmy mum, is the primary care in my family.
It means the way I really tieand every time there is something big,
we can sort of bond over thatand know that we got through it together
and that even though lots of hardthings have happened,
(20:34):
we're still here,we're still doing cool things.
So it really gives you hopethat you can sort of bounce back after all
of the challenges.
Yeah, I
think, I think the resilience is somethingthat's definitely come through.
One of the things you mentionedthere around you, sometimes your mother,
sometimes your partner,
I'm really interested to hearfrom either of yourselves.
When does that differwhen you become a carer versus having that
(20:57):
relationship with that individual?
Look, I think, I mean, from what we knowand what we see,
it's when you're taking on thingsoutside of just being a mom.
And there's, there's additionalresponsibilities is additional focus.
It's increasingthat focus and that, involvement.
(21:17):
And that person really needs youto be able to do those things for them.
And where those support needs might be,because of, you know, disability
and these different levels of disabilityand different levels of disability
needing different inputs of care,not everybody with a disability needs,
you know, 24/7 care.
But there is degrees in all of these.
(21:40):
So I think
it's when those things, also impact you.
So you're not able,you know, if you, if it's parental care
and you've got a childand you bring up a child,
that doesn't have a disability,we know what that's,
you know, a lot of usknow what that's like,
and that's timeconsuming and everything else.
But it's kind of part of, what you wouldexpect bringing up children,
when there's additional support needsand you're going above and beyond
(22:03):
and you are spending that time and it'sreally impacting on your ability to,
do day to day things in your lifewhere you've got to balance
those different things where that person'sneeds are actually, you know, often
more of a focus than your own needsor the needs of other people
within your family.
Because of the nature of they need,
(22:25):
because they might need, accessto different supports and services
that you also then have to, to navigateto get that additional support.
So I think, you know,it can be different for different people.
About when that kind of kicks in.
And I think people don't necessarilyalways realise that they’re there.
And I think part of that is,
(22:46):
again, I know I keep sayingbut back to that recognition piece,
and I think particularlyand not wanting to take away from Jac
and her experience of young carers,but some of the young carers and I know,
you know, in terms of recognitionas a young carer,
often young carersand we've had people that we've worked
with thathave gone along with their parent,
(23:07):
you know,and there's a lot of young carers
in single parent households as well.
They've gone along with their parentto a medical appointment.
Their parents had a medical condition.
And, you know, the GPor the medical practitioner
hasn't thought about that person's needs,the young person's needs at all,
and just assume that theythey're doing that, you know,
(23:29):
and until then, there'sthat kind of recognition
from those broader service providers,
where people can then get that support,and then have that recognition.
So there's, you know, it's it'svery varied.
But I think for a lotof young carers, Unhidden,
and it's
about that broader
understanding across the service systemto really bring that out,
(23:52):
to be able for people to actually say,
actually this is impacting meand that's not a bad thing.
That's okay.
And it's okay to ask for support.
Absolutely. Yeah.
I really agreewith what you said. Growing up.
I didn't know that I was a young carer.
I never even heard the termuntil I was 16.
And I became involved with Little DreamersAustralia, where I now work.
I was firstreferred to their tutoring program
(24:14):
because my caring role took a big impacton my education,
my ability to attend every day,sort of the energy
I had to give to my educationbecause of the toll of my caring role.
And before then, I'd been involved withsome siblings programs which are there
to support people who are the siblingsof someone with a disability.
But there wasn't recognition that you asthe young person were providing care.
(24:36):
So I think that line between, you know,the relationship with a family member
and being a carer is really crossedwhen the person you have
the relationship with has extra needsthat aren't being met by a formal care
service, respite, support,something like that.
So for me, my brothers didn't have enoughsupport, you know, 24/7.
So I really did step in to take that role.
(24:58):
And I think it's important to identifythat young people
have a really important roleto play in their family.
And they're not justthey're being impacted sort of
by witnessing the eventsthey often have a big responsibility for,
like the administrative sideof accessing services,
help with responding to emergencieslike you really sometimes are.
(25:19):
Parent.
If I had to take a role that lots of youngpeople don't usually have.
That's really interesting
and a very complex, world to negotiate,
I really I'm really interestedto see how caring has evolved over time.
And you sort of mentioned somesome compelling moments with the studies
in 1975, changesin legislation, in New South Wales.
(25:39):
Can we think about into thinkinginto the future now?
It's very hard to do.
And pandemics aside, what will caring
look like in 2030, do you think?
And that feels like it's only six yearsaway, but it could be a lifetime away.
How have we changed?
We perceive caring.
How might we look?
I thinkbecause caring is part of the community.
(26:00):
And everyone, you know, at some pointis going to be either cared for a carer,
you know, that will caring itself changesignificantly?
Probably not.
I thinkcaring is always going to be there.
And they're always going to be familyand friend, carers within our community.
They're not going to go away.
(26:20):
I think what will change and what I think
you want to seein the the end goal is that,
it's much more,
understood more broadlyby the community and accepted,
it's just part of the naturethat if you're going to work,
you might need to behave some sort of flexibility
because
you might need to respond to somethingbecause you're caring for your parents or
(26:43):
caring for, you know, a childwith a disability that needs some other,
that has other support needsand that your workplace
has that flexibility and it's embeddedas part of the normal normalized response,
if you like.
So I think it'sabout the normalization of care,
and the understandingof care across the community.
But it's also then,
(27:03):
the recognition by both carersand the community.
And it's also,
the broader service system and supportsavailable to carers
that the impacts of care is understoodand that there is that capacity
and there's that service system responsethat is specifically there for carers,
and carersand their needs in their own right.
(27:26):
Absolutely.
I think that community awarenessis the thing
I hope to see changemost in the next six years.
I think we're slowly getting there,but I know from my experience advocating
for the support of young carers, oftenwhen I would speak at like school
or if I post on social mediaabout something I'm doing
to raise awareness for young carers,I get a lot of messages being like,
(27:47):
well, I think I might be a young careror I hear a story like yours, Elena
That is, you know, I grew up as Young Carebut I didn't know it and I was 16.
Like I said,when I was referred to little dramas
and that'swhen I learned what a young care was.
And, you know, 16 was like, not too late.
Like it did meanthat I had support throughout my VCE.
So the end of high school,
(28:08):
that's our Victorian Certificateof Education for you, New South Welshman.
But yeah, so I did get supporttowards the end of high school,
but that support would have beenso valuable earlier in my education.
You know, in primary school when I wasreally struggling to attend every day.
And I had a lot of anxietyabout leaving home.
I lived like right across the streetfrom my school, like you could see
(28:30):
from my bedroom window by school,
but I'd be really nervous aboutgoing to school and leaving my family.
And even thoughI just had to cross the road.
So I think that support would have beenso helpful for me earlier in my life.
And I wish that people who messaged mesaying, I think I might be a young carer,
I wish I would start younger, likeI hope that I don't have to be the one
(28:51):
personally to bringthat sort of revelation to someone's life.
If there were people, like you said, like,
you know, doctors, communityservices, people at schools,
extracurricular activities,
it would be great
if we raised the awareness to the levelthat other people in young people's lives
could be the one to tell them, you know,I think you might have a caring role
(29:11):
rather than it be something that they haveto sort of figure out on their own.
And I like the, the it sounded likethere was a lot happening there at that
time.
And the term you had parental firedis, is a really interesting one.
What advice would you give to your 16 yearold self?
Obviously,that was a very formative period.
And that same advice is probably relevantto anyone else who might be embarking
(29:31):
on a caring role.
I think it's just to have hope,and that's really hard.
But when I was younger,I really couldn't see a future for myself.
At the end of year nine,I stopped attending school for a term.
I was really struggling with my own mentaland physical health as a result
of my caring role, and I really wasn'tengaged in my education.
And I could, like I said to my mum, oh,like, I'm just not going back to school.
(29:54):
And she was like, over my dead body.
Yeah, you go back to school.
And then I won a scholarshipto an independent school in my area,
which was really supportiveand accepting of my caring role.
And then upon graduating high school,I won a scholarship that covers
my accommodation at the Universityof Melbourne, which allows me to sort of
take a step back from my caring roleand really focus on my education.
(30:15):
So if you persevere,
there are opportunitiesand people out there that will help you.
But that was a big turning point for me.
Like,it really could have gone either way.
I have stayed engaged
or I just sort of step backand thought it was all a bit too hot.
But it is worthwhile to keep goingbecause you end up talking at Parliament.
Yeah, that's good advice.
But I think, I mean,
part of that sort of community,broader piece is that understanding
(30:37):
in the school system.
And I think we've and I know the ministerjust left that she's aware
of some of the challengesthat we've experienced trying to get,
some of thatunderstanding across into the schools.
And I know Little Dreamsdoes a lot of work, there as well.
But it's that impact intrying to have that
understanding acrossthe schools because there's,
(30:57):
there's at
least one young carer in every classroom,if not more.
I know you little dream is quite,I think, 2 to 3 in the classroom
because we know the one.
But from the kind of stats, the coursestats that we have at the moment
about wanting, you know, there's at leastone young care in every classroom.
And, those young carers also grow up
into often the adult carers.
(31:20):
And if you have that early interventionand that support,
at that point in time, he does makea huge amount of difference, as Jack said.
And that balancing,you know, education, care,
gives you some of those skillsin balancing work and care, you know,
as you go forward, but also gives youthat I suppose, permission
(31:41):
to also seek assistance, which, you know,I think is often hard for people.
Definitely.
What are some of the assumptions
that we need to challenge about carers?
Carers?
I mean, I've just got carers.
We know tell us that they don't like being
called heroes and angelsand all that sort of thing.
(32:04):
We often hear that, and I know people meanwell when they say it.
I know I put a post on somethingthat I did,
something the other day on LinkedIn.
And yeah, a couple of comments.
Where are
carers are heroes and the kind of,oh, you know, and it's not to take away
from what they do,but I just feel like it.
We know, there's often assumptionsabout them being heroes and,
and that sort of stuff.
(32:24):
And we know that carers don't like that.
At all. Maybe sometimes. Sometimes. Yeah.
I mean, I think, I think for young carersand I think young carers in superhero
kind of thing and that sort of stuff.
And I think there's a different, there'sa different kind of thing, but it's, it
can sometimes be a little bit patronizing,I think for carers and often I know,
lots of peopletalk about them in that kind of context.
(32:48):
And we know the feedback from carersis that they really, generally,
really don't like that.
So there's that kind of assumption there.
But I think there's also,
the assumption sometimes that,
you know, carers oftenget conflated or confused
with paid care workers,
carers, support workerswhen people talk about carers,
(33:09):
say under the NDIS,they're often talking about paid
paid support workers.
But people generally just got to carers.
It's not the same carers.
It can also be conflated with childcare.
And you know, parental careand things like that.
So I think sometimes some of thoseassumptions that we're talking about
(33:32):
other carers, it's not the same
because we're talking about familyand friend carers that largely are unpaid.
Yes, they may receive a carerpayment care allowance.
But they're not working in a paid capacityin the care role.
And so sometimes those assumptionsI think can carry over into the media,
how carers are portrayed, how they spoken
(33:52):
about how they're referencedin different stories.
Even in, you know, I suppose, televisionshows and things like that, they can use
the term interchangeably with carersupport workers and paid care workers.
It takes away then from
the uniqueness if you like, around familyand friend carers.
Yeah.
And would you say in the,in the young person's space,
(34:14):
what are some of the unique challengesfacing young carers
and maybe some of the assumptionsthat you'd like to see challenged?
I think a big assumptionI've come up against is that your caring
role is like a defined period of time,and for some people it is.
When I was caring for my mumwith breast cancer, she was diagnosed
in 2016 and had surgeryand started treatment that year, and then
(34:34):
she was on medication for five yearsbefore she formally entered remission.
So that sort of was like a six yearperiod.
Like, I don't say that I care for my mumnow because she's in remission
and able to support herself and, you know,back in employment and things like that.
But with my caring role for my brothers,it really is ongoing.
You know, their disability is a life long.
And even though I don't liveat home anymore, so I'm less like
(34:57):
uncle,I'm very much still in a driving distance.
And I do get the call, you know,can you do this certain thing or.
I have my twin brother, livesregionally in an area called Mansfield,
which is sort of like a 2 or 3 hour drivefrom where I am.
And a couple of times, you know,I've had to drive up there, to either
drive my brother back or,you know, pick my mum up
(35:18):
because she's been visiting there.
So it really is an ongoing role.
And I think the assumption that, you know,you need support for a certain defined
period can be really detrimentalbecause the supports that I needed
when I was in year three at school,are still helpful today.
You know, I still am asking for extensionsand assignments and, you know, sort of
(35:38):
empathy and understanding from my teachersnow that in my lecturers at university.
But they really, ongoing care requirementsthat young carers.
And then as I transitioninto being an adult care one day,
you know, I still will need that supporteven though it has been a long time.
Yeah.
And that's very interesting.
And I'm thinking about the peoplein this room,
who have managerial rolesor the managing staff.
(36:02):
What are some things that,that, workplaces can do to better support
people that have caring responsibilities?
Look, I think it's about flexibility.
Really, it's about.
And I think that's one of the, you know,if anything good came out of Covid, it's
flexibility in the workplace,the capacity to be able to work from home.
That's really worked in favour of carersthat are balancing paid work
(36:23):
with informal care.
So that has been really positive.
So I think it's about the understanding,the recognition, and understanding,
you know, what it is like to be a carerthat is doing that balance
and that juggle, having the flexibility,but also,
you know, recognition in terms of leavebecause often when carers
have to take carers leave, it comes offthe personal leave, sick leave,
(36:46):
that sort of thing,then there's no time for themselves
or when they actually need itfor themselves. And we also know that,
the healthof carers is impacted by caring.
They need their own sick leave as well.
So I think it's about lookingat some of those broader,
availabilities of leave and some of the,
the corporates that we've worked with
in that have got accreditationunder the carers employees
(37:09):
sort of carer friendly workplaceprogram have got different leave,
you know, opportunitiesand things for carers.
They've identified that they've gotreally good policies around leave.
And they've really expanded that out.
So not all of them,
but you know, different ones have donedifferent, different things to adapt.
The leave requirements.
So I think it's about
(37:29):
that flexibility and leave,but it's also about having your manager,
whoever you reporting to, whateverthe level that person might be
having that understanding about carers.
So that is a it's differentto parental leave.
You know, because often in the workplaceand we hear this a lot,
you know, it's like, oh yes.
You know Johnny Scotties concert,you know, is it okay
(37:51):
if I finish up at three and do thatand whatever.
Yes. But it's not the same for someonethat's got to go off
and maybe go and visit a nursing hometo see if that's where they might want to,
you know, have to, you know, havethe parent, go into residential aged care.
So it's making sure that there's thatflexibility, understanding, recognition.
(38:12):
And that's really got to be acrossall layers within
any organization that employs staff.
You can have an understanding manager,but if the policies
within the organization don't back it up,then it's not going to be sustainable
or it's going to be that you know,that person
moves on to another role,you need it embedded.
And that's what we seein a lot of the accredited employers
(38:33):
that they havethose layers of policy procedures.
And they actually talk the talk,these things
available on people's websites.
There's access to different services.
There's celebrations for thingslike Carers Week and that's acknowledged.
And it really is embeddedas part of the practice
in a whole range of different layers.
But flexibility, recognition and capacityfor the care life.
(38:58):
That's good.
And then in your context,it is possibly even more complex
because you've got the workplace,
then you've got different schoolsettings tertiary, primary, secondary.
Yeah, I think it's especially hard foryoung people because I'm a casual worker.
So I didn't get any leave.
So if I miss a shift or I can't come inthat week because of my caring role,
I'm not getting paid.
(39:19):
So I'm only paid the hours that I'm there.
And I think, like you mentioned,the embedding, the training
and the understanding really doescome down to staff awareness.
And I think as a young person, it's hardbecause a lot of young people are employed
in retail and hospitality.
So my first official job was at BakersDelight and my I was 15,
(39:39):
my manager was 16.
So I was like in year ten,my manager was in year 11.
Yeah, sure. Like that.
They’d never heard of what a young carer was.
So that's not really a conversationI can have with like
maybe a 16 year old, like I was 15.
Depends. When their birthday was.
You know, it's kind of hard.
And I think organisationsreally need to take that on
(39:59):
at sort of a manageriallike top senior level to make sure
that the managers in those roles are ableto support carers in the workplace.
And I think that flexibility is reallyimportant, especially for casual workers,
because you don't have that paid leaveentitlement to go and do your caring role.
Yeah, yeah. That's interesting.
And just we've got another,
(40:22):
say five minutes and then we'll,we'll cut to questions from the audience.
But, are you able to share some kindof highlights scoop moments from the 20.
20 2020? Yes.
So I need to really refer to thatbecause it's, Just listening.
But it was it's been launched.
Well, it's been launched todayand there's a webinar at 12,
which I won't miss, but if anyone I thinkwill probably be recording it,
(40:45):
but the,
so the 2024
National Carers survey was doneobviously nationally across the country
with the support of the stateand territory care organizations.
We had, over 10,000
respondents to the survey.
(41:05):
And what really that has come
down to in termsof some of just the highlight findings,
is that nearly 1 in 2 carers who respondedto the National Carers survey said
they didn't feel recognized and valuedby their community or by government.
So again, that importanceof that recognition factor.
So, we're not there yet because you've got1 in 2 saying not recognition,
(41:29):
by both of those areas.
Most respondentswho stated that they were,
they weren't asked about their ownneeds as carers when supporting the person
that they care for to access disability,mental health and health care services.
So again, that focus on your own needs.
And we've you know,
we've all seen examples of, you know, asI said, often young carers or young people
(41:51):
going along with a personwith a chronic, health condition
and not thinking about that personin a single parent household
and just sort of saying,yep, blah, blah, blah,
that going homeand not having that recognition.
So that is still continuing.
This, surveyalso did have a particular focus on,
First Nations carers and young carers.
(42:12):
So around 1 in 3 First Nationscarers told us
that the mainstream servicesthat they access are not culturally safe.
So that's, that's not good at all.
And something that we obviously feelneeds,
improvement there.
And yeah, there's somethat there's some other comments
(42:33):
that will come out around that sort ofin more detail, and more analysis.
And also just in terms of young carers,while half of the young carers
who responded, I did have a teacherwho were aware of their caring role.
Only 1 in 5 had actually receivedextra support at school.
So there was awareness, but it didn'tfollow through with that support.
(42:53):
So it's really important
that there is that additional support,that flexibility that Jack mentioned,
you know, around assignments,getting things in because often
young carers can be seen as, oh, well,you know, either
if they don't know about ita bit lazy maybe.
Or they need to
but you know, they certainly otherwhat's wrong with that care or whatever.
It is about having that understandingand then providing that
(43:14):
support that's relevant.
So yeah, look,
that's just, you know,just a couple of sort of early highlights.
There will be more analysis released.
There will be a full report
from our National Caresurvey released in March next year.
And there's fact sheets at the momenton the New South Wales stats
and, all the state and territory,different stats as well.
(43:36):
First Nations fact sheet,any young care fact sheet
there will all be on our website as wellwhich which everybody can access.
And we also give out if people part of the
what we do with the surveys as wellis that we
work closely with researchers that oftenthey want to go in a particular angle.
So we make our, our dataand obviously it's all de-identified,
but our data availableso it increases and forms
(43:59):
the much broader evidence basefor for all carers as well.
That's great. Thank you for that insight.
Just to to sort of close offbefore we go to the audience.
I really love this quote by CarsonMcCullers.
The closest thing to being cared foris to care for someone else.
And I think we've sort of talked a lotabout the challenges, the complexities.
What are some of the rewards that comeswith being a carer, which that, quote
(44:22):
perfectly captures?
I think it's just the closenessof the relationships that you form
with the people that you care for.
I think being a care for siblingsis quite unique because you still
have like that sibling banterand like fighting that annoys our parents.
But we really do have a closer bond wheredeep down
we know that we're always therefor each other.
(44:42):
And even though we've been througha lot of traumatic things together,
we understand what that's likeis really people who have been there,
you know, with youon sort of every step of the journey.
And they know what it was like.
And I think when there isa lack of awareness about what
a caring role is
and what it's like to live with adisability, the biggest reward is to have,
you know, people built in into your lifethat really empathize with that.
(45:04):
That's great.
I loved having like strong
industry insightthat longer form, account of how
caring has changed and then what it's likefrom a young person's perspective.
I think it's been really interestingto hear
those really diverse perspectives andas well as your own personal experience,
now's the chance if anyonehas any questions from the audience.
(45:25):
Veronica's got a mic at the back there.
If anyone got any questions of the panel.
I was just interestedin the gendered dynamic of carers
and whether you, provide supportto all these male
(45:48):
and non-binary carers as well.
Yeah, absolutely.
Absolutely.
You know, and we've done some,
specific projects,
also looking at the needs of LGBTQ,like the full, community, if you like.
Because I quite some years ago,
there was some, you know, negativefeedback that, you know,
(46:13):
members of that
community might go to a support groupand it's all, you know, if it's
caring for a partner,with dementia, for example,
it was usually a traditional couple,since if you like, male and female,
it was lots of maybe women caringfor their husbands and, you know, same sex
couple were going to that and just didn'tquite feel comfortable, within that.
(46:35):
So we've done it.
We've got a long way to go still,
but we've done quite a lot of workto make sure that we are, very inclusive
of all carersand that there are specific resources,
and, you know, information available.
But also we partner with a whole rangeof different organizations to support
that as well.
Yeah.
Thank you.
(47:02):
Thank you.
That was fantastic.
Thank you so much for your insights. I'm.
I'm really. Interested in.
Your, telling of your journey, you know,through school, early days thinking.
Oh, well, I, you know, you know,disconnecting and then ending up.
At the, the international schooland the support you provided there.
(47:22):
Can you talk a little bitabout the independent school?
Was it sorry,could you talk a little bit about what?
Actually what they were doingthat provided that level of support?
What were the specificsthat really assisted you?
I think that it needs to be somethingsort of formal and written
so that the care of carers,the recognition is consistent.
(47:44):
So for me, at my second high school,you know,
everyone has like their student profile,mine had in there about my caring role.
And then when I had special examarrangements for exams
and things like that, it was somethingthat all of the teachers could access
because it's really taxing and tiringto retell your story every time.
And a caring role is quite personal.
(48:05):
You know, I don't want to have to
explain, you know, my mum has cancer,my brothers have disabilities.
Like we don't have time,like there's a lot of history.
But also I just want you to take meseriously because I told you
as a young care.
So I think it's that ongoing support.
And then my school also really supportedmy advocacy work, which was great.
When I was in your living,I shaved my head like completely bald,
(48:29):
and raised money for Cancer Council.
And I did that at lunchtime on the schooloval.
All my friends were watching likemy principal cut off one of my ponytails,
which is very fun.
And then when I
was in year 12,I did a cupcakes for carers
day, and I sold cupcakes and raised moneyfor Little Dreamers Australia.
And I think the factthat they really gave me that space
(48:50):
to show that this was something that I waspassionate about and their support of me
really meant that I felt, you know,I could be an advocate in my community.
And it also allowed other young carersto feel supported.
Thank you.
Any other questions?
We've got one more.
I can probably do that. That's
(49:12):
I think, so probably the public service
has good flexibility and discretion.
I suppose it's, it double, tripleif I have a question
in terms of, in terms of the leave typesthat are available, you've got obviously
family and community servicesleave, sick leave
and then, you know, the other types toil
(49:33):
stack in the public service especially.
And the reasonI'm focused on the public service,
because often
the private sector will catch upwith what the public service does that
do you think there needs to bea specific type of leave,
to enable more peopleto participate in the workforce?
Because I've got unskilled and skilled
labour shortages all over my electorate,which is 44.5% of the state.
Do you think that it just needs to bea specific type of leave that's offered
(49:56):
to people with a disability?
If so, what should it look like
and what should the threshold befor that carer status?
So I mean, I would sayI think there needs to be carer's
leave is a specific category for carers.
Because I think for the reasonsthat I said before round,
you know, they not,
you know, you take your own sickleave and other things and I, I had work
(50:17):
when I'd worked in the public servicefor all those years.
You do have that that level of flexibilitymuch more than,
outside of the public service.
So I think, yes.
For carers leave, there was an inquiryinto carers leave, you know, federally
last this earlier this year, last year
there's been so many inquiriesI can't keep up with when
and where, but there has beena recent inquiry into carers leave and
(50:40):
it was a bit blurry in termsof what they were including in that.
And it was only lookingI think I know this is being recorded,
so I'll just don't hold meto what I'm saying exactly.
But I think it was sort of focusingon sort of caring for,
older people only.
It wasn't sort of the full gamut of carersleave
(51:01):
and it was quite sort of prescriptive.
It also included sort of childcare leave,so kind of blurred everything.
So it wasn't clearsort of recommendations, but I think
specifically carersleave as its own category.
Yeah.
I think it
really needs to be on an as needed basis.
(51:22):
I think with a caring role it'sso fluctuating.
You know, now that I live out of home,
sort of technicallymy caring role has lessened.
But there are periods where I, I'mreally required to step up and be there.
So I think that carers leave
would have to be somethingthat is available to everyone,
because you really can become a carerovernight.
You know, accidents happen,people get sick, you might need to be
(51:43):
in a hospital supporting a family member,you know, at the drop of a hat.
And I think as someone who has an ongoingcaring
role,I couldn't really sort of opt out of it.
Okay. Like I reckoneveryone will be fine this year.
So even though, you know,we want to be careful to make sure that,
you know, no one sort of taking advantageof the system, I think we really need
to have trust that as caringis such a big part of our society,
(52:05):
lots of people will needcarers leave over time,
and that's a really important thingto have access to.
You know.
That's very true.
Any other questions from the audience?
No. So that brings us to the end.
I just really would like usto have a moment to thank you,
Elena and Jacqueline, for your time today.
Thanks for having us.
(52:30):
It's been a great conversation,and also to recognise the work
that Veronica has done to help myselfand the wider team realise this.
The audio visual broadcast team
to help realise this as welland the participation of yourselves
has been fantastic on National CarersWeek. So big.
Thank you.
(52:53):
Thanks for coming along.
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