August 19, 2025 • 40 mins
Supporting someone who is blind or has low vision is often a role that goes unnoticed. Many family members and friends see what they do as an act of love and responsibility. But in taking on this role, that person is also providing important support, and there are resources available for them, too.
In this special Vision Australia Radio presentation, host Sam Colley (Talking Vision) sits down with Adam Demirtel (Director Carers, Holstep Health), and Vision Australia’s wellbeing experts Debbie Loke (National Social Supports & Wellbeing Lead) and Megan Kohlhagen (Wellbeing Team Lead & Senior Practitioner). Together, they explore what it means to support someone who is blind or has low vision, the emotional journey from diagnosis to daily life, and the challenges of navigating complex systems like NDIS and My Aged Care.
The conversation highlights their hidden struggles and quiet strength, while shining a light on the culturally inclusive, practical, and emotional support available through Carer Gateway and Vision Australia.
Whether you’re supporting a parent, partner, child, or friend, this episode is here to remind you that you are not alone, and help is here for you too.
To learn more, call Carer Gateway on 1800 422 737 or visit www.carergateway.gov.au
Connect with Vision Australia at www.visionaustralia.org
Please note: Within the Vision Australian community, the term ‘carer’ is only used when referencing a paid carer. The term ‘family member and supporter’ is used to refer to someone supporting a loved one.
Listen to Vision Australia Radio for accessible news and information services 24/7. Visit www.varadio.org or ask your smart device to play Vision Australia Radio. You can find Vision Australia Radio podcasts on all major podcast platforms.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
S1 (00:13):
Today we're focusing on the everyday heroes in our community.
People who are caring for a loved one, who is
blind or has low vision. Many don't even realize their carers.
They just see it as part of family life. But
support is out there for them too. And joining me
are Adam Dimethyl from Holistic Health and from Vision Australia's
wellbeing team, Debbie Loke and Megan Kohlhagen. Welcome everyone. Adam,
(00:38):
could you tell us about your role at Holistic Health
and the work you lead with carers?
S2 (00:43):
As you mentioned from the top, my name is Adam Demurral.
I am the Director of Carers at Whole Step Whole
Step Health is the lead agency of Carer Gateway Services
across the state of Victoria, and we partner with six
other agencies to deliver carer gateway services. That includes Alfred Health.
It includes Uniting, Barwon, Grampians, Bendigo Health and it includes
(01:05):
family care. We're a consortia of seven providers in total
and we deliver services across both the metropolitan regions and
and the regional areas right across across the state from
a gateway perspective. Our role is essentially to deliver free
services and supports for unpaid carers. Statistics indicate that up
(01:28):
to 1 in 10 Australians are carers at any one
at any one time. And we know the important role
that carers play in supporting people who, um, who need
care and the role that, that and the benefit that
that adds to, I suppose, um, our overall um, health
system and more broadly our economy as well. So it's
(01:48):
a really important service that we deliver. Being here today
to talk about carer Gateway and the services we offer,
but also the partnership that we're we're working on with
a value provider such as Vision Australia. It's it's really
exciting to be here.
S1 (02:01):
Speaking of Vision Australia, Debbie and Megan, I'll come to
you now starting with Debbie. Tell us about the role
of Vision Australia's well-being team and who you work with.
S3 (02:12):
So my role as Vision Australia's national social support and
wellbeing lead, involves overseeing the wellbeing and social support programs
within Vision Australia. And it includes identifying and harnessing opportunities
to improve the reach of our programs, ultimately to support
people who are blind or have low vision to live
(02:32):
the life they choose. So it's a great and wonderful
opportunity here to be here with Adam and partnering with
him to enable that to happen.
S1 (02:40):
Sam and Megan, I'll come to you and get your
stamp on.
S4 (02:44):
Thanks, Sam. Thank you for having me today. And I
have the absolute privilege. Role of team lead of the
wellbeing team at Vision Australia, working very closely with Debbie.
And we deliver the check in and chat programs for clients.
And now also our most recent addition for family and
supporters who essentially anyone who provides some form of care
(03:08):
to our clients in the over 65 space. Our team
deliver through telehealth sessions, great conversations with clients to support
them and their families and supporters in adjustment to vision loss.
S1 (03:22):
I really would love to chat about recognition of the
caring role that all of this does encompass. Um, specifically,
the concept of caring itself is often unacknowledged, especially when
it occurs within families or close relationships. You know, many
individuals supporting a loved one with daily needs may not
(03:42):
identify as carers, even though they are providing essential ongoing care.
But the reality is they're providing vital, ongoing support, and
recognising this role can be the first step toward receiving
the support they're entitled to. So, Adam, I'll come back
to you here. When people first contact Carer Gateway, many
(04:03):
are under pressure. So what kinds of support are they
often providing, sometimes without realizing it counts as caring?
S2 (04:10):
Yeah, it's a really good question, Sam. Um, I think
just to firstly start off in terms of, um, when
we think about what a carer is, a carer is
essentially anyone who provides unpaid support to someone who needs help,
and that could be due to a disability, it could
be due to a chronic illness, it could be due
to mental health, illness, addiction or it also could be
(04:30):
due to ageing. It's important to note that carers do
come from all walks of life, and that includes siblings
who might be caring for brothers or sisters. It could
be young people supporting their parents, could be grandparents stepping in.
It could be adult children looking after their ageing parents,
or even close friends and neighbours who may be quietly
(04:53):
helping out day to day. You can essentially be a
carer at any age and any stage of life. We
often hear carers say I'm just doing what anyone would
do for for family. But often what we see carers
doing is managing medications, for example, attending appointments, helping with transport.
(05:13):
It might be about helping with the navigation of accessing
intersecting health systems. So a couple of the common ones
we see are through the aged care system and also
through through NDIS and offering that constant daily emotional support.
Others include mobility support. It could be personal hygiene and
it also could be nutrition, so the idea of preparing
(05:36):
daily meals. There's also, um, caring in the forms of
helping out to fill out forms or managing bills or
helping to explain things during medical appointments. And others are
just are just making sure that their loved one feels
safe and not alone, um, on a day to day basis.
So they often, um, we find that carers will often
(05:57):
not call themselves carers or see themselves as carers, but
they are if they are undertaking these these daily activities
and supporting the needs of someone who really needs it,
and being able to recognize that is actually really powerful,
because it does open the door to supports that can
be provided by services like Carer gateway to help to
reduce stress, to improve wellbeing and just to help them
(06:19):
to feel less alone.
S1 (06:20):
Debbie, I might come to you or Megan, perhaps in
your work with Vision Australia. What does caring for a
person with blind or low vision typically look like day
to day, emotionally and practically? And why do so many
carers go unrecognised? Which one of you wants to take
that on?
S3 (06:40):
Megan's going to take this one.
S5 (06:41):
And I think it's probably already been given a great summary.
S4 (06:45):
I guess just to reinforce, yes, what we do see is, um,
a supporter or carer often is that person that's taking
on more tasks around the home, both inside and outside.
We know and we see the loss of a license
can be an incredibly big impact on the person with
vision loss, but also that carer or supporter. It does
(07:09):
take up a lot of time driving to appointments, social
events and engagement, and sometimes what we see, that person
that's having to take on those responsibilities may be the
same age as the person with the vision loss, and
they may have their own health conditions and maybe not
feeling as confident to drive either. So suddenly they're put
(07:29):
in a position where they need to assume that responsibility,
but it may not be something that they were comfortable
with doing beforehand. So while they still might have their license,
it may be something that wasn't really a big task
for them previously. And now they're having to do that.
So that can obviously cause then a huge emotional impact
(07:50):
on them. What we do see a lot is around
that responsibility, which has already been, um, talked about around
financial affairs and banking, and suddenly someone may need to
take on those tasks and again, not feel completely comfortable
or don't feel themselves that they're skilled in that and
haven't really previously been doing that kind of role. So
(08:13):
this is what we see typically with our clients, especially
those that are in a partnership with someone similar to
their own age. We have someone who has the vision
loss and the other person having to take on all
these extra responsibilities, but they themselves also have potentially some
issues and having to take on tasks that they may
(08:34):
not have previously ever engaged in before.
S1 (08:38):
Okay, Adam, this is a great time to just come
back to you. And this is a bit of a
two part question for you. So why is it so
important that somebody sees themselves as a carer? And following
on from that, what kind of difference does that awareness
make in their journey to access support.
S2 (08:57):
The straightforward answer to this question is really that if
someone does recognize themselves as a carer and we see
this from a carer gateway perspective, they're simply just more
likely to actually reach out for support. One of the
things that we can certainly acknowledge with carers in general
is we talked a bit before about the importance of
recognition and the importance of, um, really recognising the pivotal
(09:18):
role that carers are playing. If someone is recognising themselves
as a carer, whether they need support at that particular time,
or whether there may come a time over the ensuing weeks,
months or years where they really do need support, there
will be more well equipped to actually be able to
identify services like what's on offer through Carer Gateway. They'll
(09:38):
know to pick up the phone at that point, and
they will be able to connect them quite, quite quickly
and seamlessly to the supports that they need. We at
gateway are constantly looking at different ways to, I suppose,
raise awareness of what a carer is, and I talked
about those statistics a little bit earlier about the prevalence
of carers across not just the state of Victoria but
across the country. We want to be able to get
(10:00):
to as many carers as we can, but there's also
in terms of the effectiveness of the services we can
deliver as well. And we see this across, um, a
lot of a lot of different industries. But early intervention
and being able to, um, provide supports before stress levels,
for example, become they get to a certain level where, um,
(10:20):
someone is in quite, quite high levels of distress. Um,
if we can get to carers earlier and be able
to provide those early interventions, often in terms of an outcome,
we're able to see more more effective and more positive
positive outcomes as a result. And I think the other
thing that I just wanted to point out in terms
of this question as well, just in terms of the
awareness side of things, I think a lot of the
(10:41):
time for carers, there are situations where caring is not
always necessarily a choice for somebody. Um, carers are often
put in situations where, again, they may feel like it
is their duty to provide that caring support for someone.
And often you can go through quite a large range
(11:01):
of emotions and that can actually have a longer term.
It can have quite, a quite an impact on on
your physical health, on your social health, um, and on
your mental health as well. So there is a sense
sometimes when we speak to carers before hearing about services
like Carer Gateway, they may feel like that they are
on their own, they are going through something that nobody
else is or that nobody else can actually relate to. Um,
(11:24):
so again, services through Carer Gateway, that recognition of being
a carer, it just helps from a, I think from
a mindset perspective, to know that there are others out
there that are going through something, something similar and then
that flow on effect of there are quite structured supports
that are available, um, for carers as well. Their focus
is typically constantly on the person that they are caring
(11:45):
for and not on themselves and their own health and wellbeing.
S1 (11:50):
Okay. I'd love to focus on the emotional journey from
diagnosis to daily life. So, you know, vision loss is
life changing, not just for the person diagnosed, but for
the people who support them every day. It can shift
family dynamics, routines and roles in ways that are deeply emotional,
and carers often feel the weight of this transition long
(12:12):
before they even realize they're in a caring role. So, Adam,
in those early months, after a diagnosis or a change,
what kind of support do carers often need most, and
how can Carer Gateway help ease that emotional load.
S2 (12:26):
In those early months? Often everybody goes through those stages
of change as well and everyone responds differently to that
as well, particularly if the diagnosis means that for that particular, um,
inner circle, that there are going to be a lot
of day to day changes in terms of the support
that somebody who requires care that that caring may actually need.
(12:47):
So the emotional side of things and the emotional support,
particularly in those early months, is is is really crucial. Um.
Carer gateway offers a number of different services that are
available to support carers in those early months. From our perspective,
we see quite a high need for counselling supports, um,
which we can offer through um gateway and again that
(13:08):
helps to deal with some of the, the mental health
and wellbeing and the emotional health side of things for carers.
We also have we have a peer support group programs
as well, where we have a facilitator that in a
group setting that actually supports carers and like minded carers
to come together, to actually be able to discuss their
experiences in a really safe, a safe environment and again,
(13:30):
putting some of the context of, of a new diagnosis, um,
into perspective and again, knowing that others, um, have potentially
gone through something similar, we find really helps in terms
of that initial journey, um, and that initial change to
manage that effectively for for carers.
S1 (13:49):
Debbie. From what you can see at Vision Australia, how
can this kind of shift affect the carers wellbeing emotionally,
mentally and even socially?
S3 (13:58):
Thank you Sam. Um, so this shift can often lead
to carer burnout and fatigue, as the carer often does
not have time to reflect on their own needs. Which
is exactly what, um, what Adam has been saying all along.
They may not have time or the motivation to spend
on themselves, on the things that matter to them and
the things that bring them joy. When this happens, when
(14:20):
a person is doing everything for everyone except for themselves,
it can become overwhelming. Um, and this may lead to
them feeling depressed and anxious, which impacts negatively on their
emotional and physical state, which obviously then impacts on their
ability to care and to support for the person that
they are caring for. And furthermore, there might be a
breakdown in communication between the carer and the person that
(14:43):
they're caring for, um, which leads to relationships, issues. And
then ultimately this could lead to the carer maybe even
beginning to feel resentment towards the person with vision loss.
S1 (14:55):
Which we don't want at all. Are there common emotional
experiences or reactions carers share with you during that early
adjustment period, and what seems to help them feel less alone?
S4 (15:08):
Yeah, so there's a number of, um, I guess, emotions
and experiences that we hear about. Some people feel guilt.
They feel guilt that they're not the person that's experiencing
that vision loss. And therefore, if they're going out and
socially integrating and having a good time and the person
is sitting at home not in such a great space,
(15:29):
that makes them often socially isolate themselves because they feel
that if their loved one can't participate or doesn't want
to go out anymore to enjoy activities, then they feel
bad and sometimes then isolate themselves as well. We often
find when we did some research on what carers, I
guess wanted from Vision Australia, they did dismiss their own
(15:52):
needs and their first instinct was to identify ways to
help the person that they were caring for. The stress
they talked about, they, they said, was caused by not
knowing how to help or where to find the help.
So overwhelmingly, we saw that supporters of carers goal was
to keep their loved one at home with a good
(16:13):
quality of life. We often feel, or we hear too,
that they often feel, that they are restricting their loved one.
So sometimes it can be that real fine balance and
getting it right can be really hard, with Overhelping doing
too much for that person with the vision loss and
then the other way or not helping at all. And
(16:36):
often supporters and carers can feel like they're walking on eggshells.
Not quite sure how much they should be helping, or
how much they should be trying to maintain the independence
of their loved ones.
S1 (16:49):
I want to have a bit of a chat about
hidden carers and cultural perspectives now, and specifically in many
multicultural or intergenerational families. Helping out is simply expected, but
without recognising that it's a caring role. People can miss
out on the support they deserve and need. So, Debbie,
(17:10):
I'll go back to you. How do cultural values or
language barriers affect whether someone seeks support, and what patterns
do you see in different communities?
S3 (17:20):
Um, Sam. Yes, cultural values and language barriers do affect
whether someone begins the journey of seeking support. Oftentimes, someone
may not seek support because they're unaware that the support
is out there. And other times it's likely because that
expectation to care for your parents, for instance, is passed
down from the generations before, and perhaps the carer may
(17:43):
not seek support because they have seen carers within their
own extended family network perform the caring role solely by themselves,
without external support or help. So, for example, caring is
definitely seen as a responsibility in many eastern cultures and
often there can be unspoken expectations placed on the carer
(18:06):
that they may not even know themselves. So you have
to care for me now because I cared for you
when you were a child. That is very common, and
it's often tied in with, um, how respect is shown
in the eastern culture. And even there's various degrees of,
of these expectations and comments such as, um, I had
(18:26):
you so that you can care for me in my
old age is not an uncommon statement, Sam. Um, which
it's quite confronting particularly obviously, this can be really, really overwhelming,
particularly if the carer is part of the sandwich generation
where they are caring for their elderly parents, which has
been thrust upon them from the generations before them, from
(18:49):
the cultural sort of expectation. Um, as well as then
they've got the role of caring for their own family.
S1 (18:55):
Adam, I'm interested in your perspective. Specifically, how is Carer
Gateway working to connect with carers in multicultural or regional
communities who might not realise this support is for them?
S2 (19:12):
Sam, it's um, one of the things that we never
expect is that carers are necessarily going to just come
to us and access services, we understand. Um, and a
big part of the work, I suppose, we do in
our work, but also in our partnership work with, with
Vision Australia is we I think we collectively share that
understanding around intersectionality as well, all those factors of disadvantage
(19:34):
that people face and how that can have flow on
effects to. Yeah. Accessing the services that they potentially need
and creating some inequities in in our, in our systems
as well. So I guess one of the things that
I know we've done over time, um, with our partners,
including Vision Australia, is look at outreach activities and engagement activities,
not just in our metropolitan regions, but also right across
(19:56):
our our regional and remote areas of of Victoria. We
will work, as I said, with, with, with our partners
in potentially co-presenting on on particular topics which, which may
resonate with particular populations or communities in particular areas. So
we're able to, as I said, able to work with
our partners, um, work with Vision Australia, but also work
(20:16):
with our, I suppose, across our consortia as well in
in Carer Gateway to be able to um, to, to
deliver that. So I think that notion of going to
those areas of need and having a presence and building
that trust is really, really important. Probably the second thing
that I would raise in this space as well, is
that from a continual focus for Kerry Gateway, we are
(20:40):
we are continuing to look at ways that we can
better connect with people who haven't accessed our services before.
From your listeners perspective as well, and from a Vision
Australia perspective, part of our collaboration and partnership is to
look at ways that we can connect with carers who,
as I mentioned earlier, don't necessarily identify themselves as carers.
(21:00):
We do really try and make sure that within our
services that we've got the ability to yeah, to have
the space to be able to provide that, that, that,
that key support. And that's something that we're, we're we're
constantly working on different strategies, I suppose, around in terms
of the way we're, um, we're set up as well.
We've got um, in terms of our promotional information, the
materials that we, we have that promote what we do.
(21:22):
So it could be our flyers, it could be information sheets,
for example. We'll make sure that they're, um, translated into
other common languages. So it is easily understandable for our
our diverse communities. We use, for example, interpreting services when
we need to, as well to support the services that
we deliver. And even from a from a workforce perspective,
(21:45):
we you know, we have a percentage of our workforce
that are bilingual as well. So, you know, speaking languages
other than English as well. So again, we've we've got
the ability to be able to build that trust and
connect with with our diverse communities.
S1 (21:58):
Adam, I'll stay with you. What's been done to make
sure the support provided is genuinely respectful, accessible and relevant
to each community's needs?
S2 (22:08):
Yeah. So again, I was just talking a little bit
about workforce. And and one of the things that we'll
always ensure is to make sure that our workforce is
appropriately trained and upskilled in, for example, cultural training and
cultural sensitivity training and trauma informed training as well. We
always find, um, that's a that's a really good start
in terms of making sure we've got consistency across the way.
(22:29):
I suppose we're approaching just our day to day conversations.
In terms of carer gateway perspective, one of the things
that we really focus on with our model and in
terms of the way we work, when someone does contact
Carer Gateway for for the first time, we really focus
on a carer centred approach to what we do. So
(22:53):
when we, for example, go through what we call a
carer star, which is central to our our model of support,
we really focus on, um, understanding the carer goals and
the carer needs and it's a holistic assessment, I suppose
that we do, we make sure that's in the carers
words I suppose, as well when we approach that. So um,
(23:14):
it's understandable, but really what we're focusing on there is
all aspects of a carers wellbeing. What that carer star
then allows us to do is to work with the
carer to identify which services as part of carer gateway
are going to best support that carer for their needs
at that particular time. We also have tailored packages of
(23:35):
support that we can look at, providing some initial initial
capacity building or taking some stress off. I suppose for
the carer in those initial stages that we can look at,
we've got planned and emergency respite as a service through
the Carer Gateway, and we also offer coaching as well
through the through the Carer Gateway as well. So there's
a gamut of of services on offer. I think the
(23:57):
key for me when I think about particularly that idea
of respect, it's really about and a respectful way of
approaching service, service delivery. I think it's really about making
sure we put the carer at the centre of the
care that we are, we are delivering, um.
S1 (24:11):
I want to tackle that stress and that feeling of
being overwhelmed. It's a bit of an unspoken kind of
aspect of the caring experience. Quite often, where caring can
often feel like you've suddenly become a full time coordinator,
navigator and advocate all on top of everything else you're
(24:32):
trying to manage. Appointments, services. Decisions, often without much help.
The systems are complex. It's easy to feel overwhelmed, but
you don't have to do it all on your own.
That's the most important thing. So what do carers share
with you about the challenges of managing different services and
(24:52):
support systems?
S4 (24:53):
Thanks, Sam, and you're exactly right. People do feel overwhelmed.
They're not quite sure what all the services that they're
entitled to and how they all fit in and in
terms of also cost and availability near and around them.
As we know, there's many aged care services, but there's often, um,
(25:14):
time waits on some of those services in particular regions.
It's a bit of a minefield to to get through
all that. And I guess that's where our programs can
really help somebody by talking through all the services that
that they can receive and what that means for them.
And we often spend time warm transferring clients to my
(25:37):
aged care and the different services to help them access
those services, because it can be, as you said, extremely overwhelming.
And sometimes they just need some support and a bit
of a helping hand from someone who understands it and
connect them with what they're hearing that they that they need.
(25:57):
It can also be very overwhelming for the supporter, family member,
the carer, because the person in our case the vision loss,
they need to accept that help and services. So what
we do here sometimes is family member will say that
the client says, oh well, my partner or my spouse,
they can drive me to the appointments. I don't need
transport assistance. But that's sometimes without considering or recognizing that
(26:22):
potentially that supporter or carer doesn't feel confident, or often
they have their own health conditions, as I said previously,
and therefore that doesn't come easy to them. It's about
sometimes also the person with the vision loss accepting what's
out there for them, so that that will also help
the person who is providing the care to them.
S1 (26:43):
Adam, how does Carer Gateway support carers who are feeling overwhelmed,
whether that's through coaching, emotional support or simply helping them
figure out what to do next?
S2 (26:55):
I can really resonate around those comments about particularly, um,
I think the aged care system at the moment. I think, um,
we can understand that carers who are caring for somebody
who is also accessing the aged care system, um, and
supports through their or even NDIS, through um, through the, the,
the disability system at the moment that there's a lot
(27:18):
of change that's happening at the moment. There's been obviously
reform as well that's still ongoing in the aged care space,
and those changes can put increased pressure on on navigation
in general. But it's often the carer who actually bears
the brunt of that. Those changes. They're the ones who
have to often get their head around, um, what that
(27:40):
change is how they can ensure that the person that
they are caring for is still getting the support that
they need. So that in itself, um, when we're going
through change in, around these different systems, um, it can
really have that flow on effect. So I guess one
of the things that we do at Carer Gateway is
we try and um, first and foremost stay up to
(28:01):
date with those, those changes. So at different points through
our carer journey, if we've got the opportunity to be
able to provide some, even if it's just some basic
information about those, um, about those different intersecting systems, or
it might be just knowing about the different services that
are out there at the local level that actually can
add or provide additional support for carers to build their
(28:25):
capacity to be able to support better support the person
they're caring for. It's often those avenues that we, I suppose,
that we look at in terms of when we see
the the presentations of someone being quite overwhelmed. Um, you
mentioned Sam coaching before. So again, being able to, um,
have the opportunity to link somebody in with a what
(28:46):
we call a carer coach to really focus on building
their capacity in their caring role is something that we
look at doing. And that and we often find that
has positive impacts on on those feelings of being overwhelmed.
I suppose depending on the level of stress that someone
might be feeling with some of those system changes, the
(29:06):
type of caring role they're in. I mentioned before about
planned and emergency respite as well. So that is something
that we can look at to actually if if someone
is impacted to a point where they need a, they
simply need a break from their caring role. Um, we
can look at putting supports in in around that as well.
The final point I'd make is and just to reiterate,
I think from a service navigation point of view, I think, again,
(29:30):
looking at the different ways that we can connect across systems,
but also the different ways that we can connect as partners.
So again, looking at, um, from a whole step health and,
and from a um, Vision Australia perspective, looking at those
opportunities to be able to provide more seamless support. Again,
it's another example of where there's so much yeah, so
(29:51):
much opportunity, I suppose, in this space to make that
outcome much better for not just the carer but also
the person they're caring for.
S1 (29:57):
Debbie, I'll come to you very shortly, um, to have
a bit of a chat about how holistic health and
Vision Australia can work together to better advocate for carers
of people caring for someone who is blind or has
low vision from communities who face Extra barriers to support,
particularly in multicultural First Nations, LGBTQi+ or rural and regional settings.
(30:23):
And Debbie, after we come to, you will also open
the floor to Megan and Adam in case they want
to jump in and contribute.
S3 (30:31):
Thanks, Sam. Yes, Vision Australia will definitely continue to collaborate
with Whole Step Health to raise awareness within our blind
and low vision community of the available service and supports
out there that are available for carers. And we have
been definitely referring a lot of our carers of our blind,
low vision clients to Carer Gateway and Whole Step Health,
(30:54):
because we know that they are keeping abreast with all
the changes that are happening right now, and also being
proactive in working with organisations that can provide these sort
of supports to our carers. We ourselves will continue to
identify opportunities to work with other organizations who are also
passionate about the same cause. In this interview, I think
(31:16):
we're doing Adam, today is a great demonstration of the
power of collaboration. Sam. So yeah, we will continue to
find opportunities to work together to, to, um, enable this
for our carers.
S1 (31:28):
Okay. Um, Megan, did you have anything to add there?
S4 (31:31):
Um, the way I see it with Carer Gateway is
with the check in and chat for families and supporters.
Our main focus with that. And, um, as I said before,
it came from the research that when we interviewed, um,
our carers, their main goal, what they wanted was to
have the skills, the tips and the strategies, the knowledge
(31:53):
to be able to provide support to, um, assist and
support their loved ones. So that's our main focus in
the programme, and it's great for us to have Carers
Gateway that we can refer to to ensure that the
carers and the supporters really gain all the other kinds
of services that that are on offer from Carers Gateway,
(32:16):
including that great emotional support for them. So while we
obviously do lend a listening ear and can guide them
and provide empathy and obviously have a conversation, we would
look to refer our supporters and family to Carers Gateway
to gain that emotional support for them.
S1 (32:36):
Adam, what's your perspective from the whole step health side
of things?
S2 (32:40):
Yeah, it's interesting just in terms of reflecting on what
Debbie and Megan have touched on there. I think from
our perspective, particularly, those referral pathways really resonate for us.
And I think with any partnership, one of the things
that we really focus focus on is that two way
partnership as well. Um, because there's always a really strong opportunity,
I suppose, from our end, obviously, to provide the support for,
(33:02):
for carers, but also from our end, just recognising the
vital support that, um, that Vision Australia is actually providing
for people who are blind or have low vision. I
think that's for our from our end as well. It's
it gives us from a health perspective, it really helps
us to make sure that anybody that does require that support,
(33:23):
we can always link them, link them back in through
through Vision Australia services as as well. So for me
those referral pathways, it's really about that to that that
two way partnership from our end as well. But also
I think, um, one of the things that really stands
out to me is about, um, drawing on both organisations strengths.
When I think about and we think a lot from
(33:45):
a carer gateway perspective, obviously about about the carer, I
think when we're when we're truly collaborating and we're coming
together and partnering, the benefit of that is actually not
just for from our, not just for the carer, it's
actually also for the person receiving the care, but actually
for that network as well. Yes. So so you know,
whether it's it's family, it's close friends. It just makes
(34:07):
sure you've got a really holistic approach to care and support.
S1 (34:11):
And let's have a bit of a chat about looking
after the carer. Now it's easy if you're a carer
to put yourself last, but your wellbeing does matter as well,
so you don't have to wait for a crisis to
get help. And Megan, this is where I want to
come to you. What are some of the early signs
that a carer might be struggling emotionally, even if they
(34:33):
don't realise it yet?
S4 (34:35):
Yeah. Thanks, Sam. So there's many warning signs. These can
be feeling unhappy or depressed, feeling anxious or worried. You
may be having some angry or emotional outbursts. There may
be alcohol or substance abuse, changes in appetite or weight,
withdrawal from friends or family, and socially isolating yourself, feeling
(35:00):
worthless or guilty, and increased tiredness sleep problems, changes in behavior.
They're all, I guess, common symptoms that we do see.
S1 (35:09):
Adam, I'd like to just, um, come to you now.
Based on what you hear from carers, which carer gateway
services tend to make the biggest difference to their wellbeing,
especially once they start using them.
S2 (35:23):
In the wellbeing space? To an extent, depending on on
carers particular presentation and what we've assessed in terms of
their needs, all of our services can play a positive
role in, um, in supporting someone's wellbeing in general from
an initial standpoint that often the carers, the the tailored,
(35:45):
tailored packages that are that are on offer through the
carer gateway is a really good way of putting some
day to day supports in place, and often it's just
small changes that we can really affect on a daily
basis through those support, um, support packages that make a difference.
So a couple of examples might be support around transport,
for example, it might be some support around or cooking
(36:07):
and cleaning, as another example. Or it might even just
be some support around personal hygiene as well. And capacity building,
I think is the other thing that that that really
stands out to me with that as well. So we
do see on, on, on occasion that we have carers
accessing those support, those tailored support packages that we support
with equipment. It might be around employment support, it might
(36:28):
be around education, um education support as well. So it's
it's really focused on a taking the pressure off the
carer on their day to day. Um, from their, I suppose,
their day to day role and their caring role, but
also um separate to that is it's that capacity building
side of things as well. Because from a wellbeing perspective,
one of the things that we hear a lot when
we speak to carers is that they almost have to
(36:50):
put their life on hold. It's a very selfless situation
and selfless approach, but often giving them some support or
giving them some allowance. I suppose to know that it
is okay to continue to find ways to to look
after yourself and to continue to progress your yourself and
your own, your your own needs and put that that
(37:11):
at the forefront as well is really important because the
flow on effect to that in terms of wellbeing is
if the carer is in a better emotional, physical, social,
mental state, generally their ability or their capacity to care
also improves. So it's almost trying to provide those initial
supports to flip that narrative a little bit for for
for carers.
S1 (37:31):
Before we wrap up, I'd just love to focus back
on the collaboration between Holistic Health and Vision Australia. And Debbie,
I'll start with you here. How does this collaboration between
Holistic Health and Vision Australia help provide more connected, meaningful
support for carers and families?
S3 (37:52):
Collaboration is crucial Sam. In partnership, we can ensure that
the support and services provided are holistic, which is what
Adam mentioned earlier, and that they're meaningful and relevant at
the time that is needed so we can focus on
our own strengths. Again, something that Adam did mention earlier, um,
and we completely agree. Um, we can focus on our
(38:13):
own strengths and how we provide that support for the
carers and their families, recognizing that the needs of the
carer and their families will continue to evolve over time
as they journey through the different stages of their lives
and in our case, the journey of the low vision diagnosis.
S4 (38:32):
I was just thinking as Adam was talking and he
is right, it's that caring is so selfless, you know,
talking about making sure that carers and supporters have got
their own activities and do have good wellbeing themselves is
absolutely imperative for them to then support the person with
vision loss. So our over 65 programme for the supporters
(38:56):
and family members is based around our client with vision
loss goals. But how I see it connecting is that
by focusing on our clients with vision loss, looking at
their meaningful activities, and if the client is doing those
meaningful activities, what we're hoping to see is that then
that allows for their carer or their supporter to be
(39:18):
able to have those services in place so that then
they might be able to get a rest. You know,
the transport is maybe potentially one way. So by using
some of the transport that is available that can free up,
then the carer or the supporters time that maybe someone
else or a service is taking the person with vision
(39:39):
loss to an appointment or to a social activity, and
hopefully then that's freeing up some time for the carer
or the supporter to spend that time looking after themselves.
S2 (39:50):
Yeah. And I suppose from my perspective it's just really, um, um,
backing up everything that's been said just resonates, I think, with,
with myself and obviously, um, from a, from a whole
step health perspective as well. I think we've already spoken
about the importance of of leveraging off both organizations strengths. Yeah.
Which I think is really crucial. Um, I think the
(40:11):
opportunity to continue while we've got referral pathways in place,
but to continue to build on that as well, to,
to strengthen those even more, it's only going to it's
only going to help to benefit those who are blind
or experiencing low vision. But also it's only going to
benefit carers as well. So it's again, I think we
mentioned before about that holistic approach, it's only going to
it's only going to enhance that I think as well.
(40:33):
So and again I see it as, as we've got two,
two organisations here with almost specialist services and perspectives and
it's just bringing those together.
S1 (40:42):
Adam, staying with you, what do you hope this partnership
will continue to deliver for carers and across Victoria, especially
those in rural or culturally diverse communities.
S2 (40:53):
The message for me is quite simple but quite powerful,
I think. We continue to look at from a partnership perspective.
How can we continue to support as many carers as
we possibly can, and also how can we continue to
to deliver those services and supports and raise that awareness
to carers in all communities across across the state to
(41:15):
actually be able to, to to get to them and
to be able to actually ensure that they are if
if someone out there is is a carer, they're actually
identifying themselves as a carer, a and then B that
they just know that support is out there and available
for them. Um, as, as, as well when they need it.
So I think the partnership here with, with Vision Australia
(41:35):
really it's, it's a pathway or it's a real opportunity
to open up some of those, those doors for carers
who potentially have an access services that they potentially need.
So yeah, for me it's it's really it's a really
powerful opportunity.
S3 (41:48):
When Adam spoke about the person centred approach That is
also our approach certainly is. Yes. Remind our listeners, we
we do well by listening to our clients. We would
continue to ask our clients to let us know how
their carer, how their carers are doing by telling them
and all of our clients about whole step health and
informing them of all the different supports and services that
(42:12):
are out there available for them to access by telling
our clients about our Quality Living program, also for carers.
I know Megan has mentioned our um family and supporters
check in and chat program, but we also have a
quality living program for carers, which is a safe forum
for carers to connect with others to identify the practical
(42:33):
and emotional challenges, to share and learn strategies to support
their loved one. To live confidently with vision loss.
S1 (42:41):
Megan, I think Debbie's covered quite a lot of this
really well just now, but um, I'm just ask the
same question to you. Looking ahead.
S4 (42:49):
The collaboration will be terrific. Just to ensure, you know,
both clients and the carer are receiving all the services
and supports that are out there for them. So for
both to have, you know, improved or enhanced their wellbeing,
to know of these services and to embrace them.
S1 (43:09):
If you've seen yourself in this conversation or you've thought
of someone you care about, now's the time to reach out.
If you're supporting someone with vision loss, you might be
a carer and that means you deserve support as well.
Carer Gateway and Vision Australia are here for you. Now Adam,
on that topic, for anyone listening today who feels they
(43:30):
might be in a carer role, where can they begin
if they want to connect with carer Gateway?
S2 (43:36):
So in terms of um information we've got our Carer
Gateway website which um, everybody is welcome to, to visit,
which has a suite of information about the services that
we have on offer and resources available as well. So
that's WWE gateway. Another really simple way to reach out
(43:56):
is via our one 800 number, which is 1800Â 422Â 737. And again,
if you call that number, someone on the other end
of that, that line will be able to provide you
with some really quick some really basic information about about
eligibility as well. And then from there we can connect
you into, you know, your local, local, um, region to
(44:18):
access services.
S1 (44:19):
Fantastic. And Megan, what message would you like to leave
carers with today, especially those who might be listening quietly
and haven't asked for help yet?
S4 (44:28):
Yes. So I would encourage, um, we are very excited
about our new check in and chat program and opening
that up for family and supporters. And as I said,
it does come from feedback that had been received up
to about two years ago which identified that many of
our clients carers wanted a programme, or they wanted support
(44:51):
to give them the tips and strategies to. To support
their loved one or their person living with vision loss. Please,
if you feel that you would like to gain some knowledge,
understand what the client is going through, um and how
you can help them, but also then get help yourself.
We are here for that. So please reach out to
(45:14):
Vision Australia.
S1 (45:15):
And Adam, I understand there's a final point you just
wanted to raise.
S2 (45:19):
There is no referral that is actually required for Carer Gateway.
I think that's an important one to to point out that, um,
we really try and make sure that those access barriers
are really knocked down to make ease of access, um,
right at the forefront. And also the support that we
do offer through Carer Gateway is not it's not means tested.
So our services are essentially open to anybody in a
(45:41):
caring role, no matter how big or how small that
caring role feels.
S1 (45:45):
And you can of course call carer gateway on one
804 2737. That's one 804 2737. That number Adam's given
there or visit the website gateway carer gateway or one
word gov. And you can also connect directly with us
(46:06):
at vision for culturally inclusive and practical support. Because there
is support, there is hope and there is a whole
community ready to walk beside you. I've been speaking today
with Megan, Debbie and Adam collaborating between Carer Gateway and
Vision Australia to provide vital services for carers of persons
(46:29):
who are blind or have low vision around Australia. Thank
you everybody for your time today. It was great to
catch up with you and have a chat all about
the collaboration and all the best for the future.
S2 (46:40):
Thank you. Thank you.
Today we're focusing on the everyday heroes in our community.
People who are caring for a loved one, who is
blind or has low vision. Many don't even realize their carers.
They just see it as part of family life. But
support is out there for them too. And joining me
are Adam Dimethyl from Holistic Health and from Vision Australia's
wellbeing team, Debbie Loke and Megan Kohlhagen. Welcome everyone. Adam,
(00:38):
could you tell us about your role at Holistic Health
and the work you lead with carers?
S2 (00:43):
As you mentioned from the top, my name is Adam Demurral.
I am the Director of Carers at Whole Step Whole
Step Health is the lead agency of Carer Gateway Services
across the state of Victoria, and we partner with six
other agencies to deliver carer gateway services. That includes Alfred Health.
It includes Uniting, Barwon, Grampians, Bendigo Health and it includes
(01:05):
family care. We're a consortia of seven providers in total
and we deliver services across both the metropolitan regions and
and the regional areas right across across the state from
a gateway perspective. Our role is essentially to deliver free
services and supports for unpaid carers. Statistics indicate that up
(01:28):
to 1 in 10 Australians are carers at any one
at any one time. And we know the important role
that carers play in supporting people who, um, who need
care and the role that, that and the benefit that
that adds to, I suppose, um, our overall um, health
system and more broadly our economy as well. So it's
(01:48):
a really important service that we deliver. Being here today
to talk about carer Gateway and the services we offer,
but also the partnership that we're we're working on with
a value provider such as Vision Australia. It's it's really
exciting to be here.
S1 (02:01):
Speaking of Vision Australia, Debbie and Megan, I'll come to
you now starting with Debbie. Tell us about the role
of Vision Australia's well-being team and who you work with.
S3 (02:12):
So my role as Vision Australia's national social support and
wellbeing lead, involves overseeing the wellbeing and social support programs
within Vision Australia. And it includes identifying and harnessing opportunities
to improve the reach of our programs, ultimately to support
people who are blind or have low vision to live
(02:32):
the life they choose. So it's a great and wonderful
opportunity here to be here with Adam and partnering with
him to enable that to happen.
S1 (02:40):
Sam and Megan, I'll come to you and get your
stamp on.
S4 (02:44):
Thanks, Sam. Thank you for having me today. And I
have the absolute privilege. Role of team lead of the
wellbeing team at Vision Australia, working very closely with Debbie.
And we deliver the check in and chat programs for clients.
And now also our most recent addition for family and
supporters who essentially anyone who provides some form of care
(03:08):
to our clients in the over 65 space. Our team
deliver through telehealth sessions, great conversations with clients to support
them and their families and supporters in adjustment to vision loss.
S1 (03:22):
I really would love to chat about recognition of the
caring role that all of this does encompass. Um, specifically,
the concept of caring itself is often unacknowledged, especially when
it occurs within families or close relationships. You know, many
individuals supporting a loved one with daily needs may not
(03:42):
identify as carers, even though they are providing essential ongoing care.
But the reality is they're providing vital, ongoing support, and
recognising this role can be the first step toward receiving
the support they're entitled to. So, Adam, I'll come back
to you here. When people first contact Carer Gateway, many
(04:03):
are under pressure. So what kinds of support are they
often providing, sometimes without realizing it counts as caring?
S2 (04:10):
Yeah, it's a really good question, Sam. Um, I think
just to firstly start off in terms of, um, when
we think about what a carer is, a carer is
essentially anyone who provides unpaid support to someone who needs help,
and that could be due to a disability, it could
be due to a chronic illness, it could be due
to mental health, illness, addiction or it also could be
(04:30):
due to ageing. It's important to note that carers do
come from all walks of life, and that includes siblings
who might be caring for brothers or sisters. It could
be young people supporting their parents, could be grandparents stepping in.
It could be adult children looking after their ageing parents,
or even close friends and neighbours who may be quietly
(04:53):
helping out day to day. You can essentially be a
carer at any age and any stage of life. We
often hear carers say I'm just doing what anyone would
do for for family. But often what we see carers
doing is managing medications, for example, attending appointments, helping with transport.
(05:13):
It might be about helping with the navigation of accessing
intersecting health systems. So a couple of the common ones
we see are through the aged care system and also
through through NDIS and offering that constant daily emotional support.
Others include mobility support. It could be personal hygiene and
it also could be nutrition, so the idea of preparing
(05:36):
daily meals. There's also, um, caring in the forms of
helping out to fill out forms or managing bills or
helping to explain things during medical appointments. And others are
just are just making sure that their loved one feels
safe and not alone, um, on a day to day basis.
So they often, um, we find that carers will often
(05:57):
not call themselves carers or see themselves as carers, but
they are if they are undertaking these these daily activities
and supporting the needs of someone who really needs it,
and being able to recognize that is actually really powerful,
because it does open the door to supports that can
be provided by services like Carer gateway to help to
reduce stress, to improve wellbeing and just to help them
(06:19):
to feel less alone.
S1 (06:20):
Debbie, I might come to you or Megan, perhaps in
your work with Vision Australia. What does caring for a
person with blind or low vision typically look like day
to day, emotionally and practically? And why do so many
carers go unrecognised? Which one of you wants to take
that on?
S3 (06:40):
Megan's going to take this one.
S5 (06:41):
And I think it's probably already been given a great summary.
S4 (06:45):
I guess just to reinforce, yes, what we do see is, um,
a supporter or carer often is that person that's taking
on more tasks around the home, both inside and outside.
We know and we see the loss of a license
can be an incredibly big impact on the person with
vision loss, but also that carer or supporter. It does
(07:09):
take up a lot of time driving to appointments, social
events and engagement, and sometimes what we see, that person
that's having to take on those responsibilities may be the
same age as the person with the vision loss, and
they may have their own health conditions and maybe not
feeling as confident to drive either. So suddenly they're put
(07:29):
in a position where they need to assume that responsibility,
but it may not be something that they were comfortable
with doing beforehand. So while they still might have their license,
it may be something that wasn't really a big task
for them previously. And now they're having to do that.
So that can obviously cause then a huge emotional impact
(07:50):
on them. What we do see a lot is around
that responsibility, which has already been, um, talked about around
financial affairs and banking, and suddenly someone may need to
take on those tasks and again, not feel completely comfortable
or don't feel themselves that they're skilled in that and
haven't really previously been doing that kind of role. So
(08:13):
this is what we see typically with our clients, especially
those that are in a partnership with someone similar to
their own age. We have someone who has the vision
loss and the other person having to take on all
these extra responsibilities, but they themselves also have potentially some
issues and having to take on tasks that they may
(08:34):
not have previously ever engaged in before.
S1 (08:38):
Okay, Adam, this is a great time to just come
back to you. And this is a bit of a
two part question for you. So why is it so
important that somebody sees themselves as a carer? And following
on from that, what kind of difference does that awareness
make in their journey to access support.
S2 (08:57):
The straightforward answer to this question is really that if
someone does recognize themselves as a carer and we see
this from a carer gateway perspective, they're simply just more
likely to actually reach out for support. One of the
things that we can certainly acknowledge with carers in general
is we talked a bit before about the importance of
recognition and the importance of, um, really recognising the pivotal
(09:18):
role that carers are playing. If someone is recognising themselves
as a carer, whether they need support at that particular time,
or whether there may come a time over the ensuing weeks,
months or years where they really do need support, there
will be more well equipped to actually be able to
identify services like what's on offer through Carer Gateway. They'll
(09:38):
know to pick up the phone at that point, and
they will be able to connect them quite, quite quickly
and seamlessly to the supports that they need. We at
gateway are constantly looking at different ways to, I suppose,
raise awareness of what a carer is, and I talked
about those statistics a little bit earlier about the prevalence
of carers across not just the state of Victoria but
across the country. We want to be able to get
(10:00):
to as many carers as we can, but there's also
in terms of the effectiveness of the services we can
deliver as well. And we see this across, um, a
lot of a lot of different industries. But early intervention
and being able to, um, provide supports before stress levels,
for example, become they get to a certain level where, um,
(10:20):
someone is in quite, quite high levels of distress. Um,
if we can get to carers earlier and be able
to provide those early interventions, often in terms of an outcome,
we're able to see more more effective and more positive
positive outcomes as a result. And I think the other
thing that I just wanted to point out in terms
of this question as well, just in terms of the
awareness side of things, I think a lot of the
(10:41):
time for carers, there are situations where caring is not
always necessarily a choice for somebody. Um, carers are often
put in situations where, again, they may feel like it
is their duty to provide that caring support for someone.
And often you can go through quite a large range
(11:01):
of emotions and that can actually have a longer term.
It can have quite, a quite an impact on on
your physical health, on your social health, um, and on
your mental health as well. So there is a sense
sometimes when we speak to carers before hearing about services
like Carer Gateway, they may feel like that they are
on their own, they are going through something that nobody
else is or that nobody else can actually relate to. Um,
(11:24):
so again, services through Carer Gateway, that recognition of being
a carer, it just helps from a, I think from
a mindset perspective, to know that there are others out
there that are going through something, something similar and then
that flow on effect of there are quite structured supports
that are available, um, for carers as well. Their focus
is typically constantly on the person that they are caring
(11:45):
for and not on themselves and their own health and wellbeing.
S1 (11:50):
Okay. I'd love to focus on the emotional journey from
diagnosis to daily life. So, you know, vision loss is
life changing, not just for the person diagnosed, but for
the people who support them every day. It can shift
family dynamics, routines and roles in ways that are deeply emotional,
and carers often feel the weight of this transition long
(12:12):
before they even realize they're in a caring role. So, Adam,
in those early months, after a diagnosis or a change,
what kind of support do carers often need most, and
how can Carer Gateway help ease that emotional load.
S2 (12:26):
In those early months? Often everybody goes through those stages
of change as well and everyone responds differently to that
as well, particularly if the diagnosis means that for that particular, um,
inner circle, that there are going to be a lot
of day to day changes in terms of the support
that somebody who requires care that that caring may actually need.
(12:47):
So the emotional side of things and the emotional support,
particularly in those early months, is is is really crucial. Um.
Carer gateway offers a number of different services that are
available to support carers in those early months. From our perspective,
we see quite a high need for counselling supports, um,
which we can offer through um gateway and again that
(13:08):
helps to deal with some of the, the mental health
and wellbeing and the emotional health side of things for carers.
We also have we have a peer support group programs
as well, where we have a facilitator that in a
group setting that actually supports carers and like minded carers
to come together, to actually be able to discuss their
experiences in a really safe, a safe environment and again,
(13:30):
putting some of the context of, of a new diagnosis, um,
into perspective and again, knowing that others, um, have potentially
gone through something similar, we find really helps in terms
of that initial journey, um, and that initial change to
manage that effectively for for carers.
S1 (13:49):
Debbie. From what you can see at Vision Australia, how
can this kind of shift affect the carers wellbeing emotionally,
mentally and even socially?
S3 (13:58):
Thank you Sam. Um, so this shift can often lead
to carer burnout and fatigue, as the carer often does
not have time to reflect on their own needs. Which
is exactly what, um, what Adam has been saying all along.
They may not have time or the motivation to spend
on themselves, on the things that matter to them and
the things that bring them joy. When this happens, when
(14:20):
a person is doing everything for everyone except for themselves,
it can become overwhelming. Um, and this may lead to
them feeling depressed and anxious, which impacts negatively on their
emotional and physical state, which obviously then impacts on their
ability to care and to support for the person that
they are caring for. And furthermore, there might be a
breakdown in communication between the carer and the person that
(14:43):
they're caring for, um, which leads to relationships, issues. And
then ultimately this could lead to the carer maybe even
beginning to feel resentment towards the person with vision loss.
S1 (14:55):
Which we don't want at all. Are there common emotional
experiences or reactions carers share with you during that early
adjustment period, and what seems to help them feel less alone?
S4 (15:08):
Yeah, so there's a number of, um, I guess, emotions
and experiences that we hear about. Some people feel guilt.
They feel guilt that they're not the person that's experiencing
that vision loss. And therefore, if they're going out and
socially integrating and having a good time and the person
is sitting at home not in such a great space,
(15:29):
that makes them often socially isolate themselves because they feel
that if their loved one can't participate or doesn't want
to go out anymore to enjoy activities, then they feel
bad and sometimes then isolate themselves as well. We often
find when we did some research on what carers, I
guess wanted from Vision Australia, they did dismiss their own
(15:52):
needs and their first instinct was to identify ways to
help the person that they were caring for. The stress
they talked about, they, they said, was caused by not
knowing how to help or where to find the help.
So overwhelmingly, we saw that supporters of carers goal was
to keep their loved one at home with a good
(16:13):
quality of life. We often feel, or we hear too,
that they often feel, that they are restricting their loved one.
So sometimes it can be that real fine balance and
getting it right can be really hard, with Overhelping doing
too much for that person with the vision loss and
then the other way or not helping at all. And
(16:36):
often supporters and carers can feel like they're walking on eggshells.
Not quite sure how much they should be helping, or
how much they should be trying to maintain the independence
of their loved ones.
S1 (16:49):
I want to have a bit of a chat about
hidden carers and cultural perspectives now, and specifically in many
multicultural or intergenerational families. Helping out is simply expected, but
without recognising that it's a caring role. People can miss
out on the support they deserve and need. So, Debbie,
(17:10):
I'll go back to you. How do cultural values or
language barriers affect whether someone seeks support, and what patterns
do you see in different communities?
S3 (17:20):
Um, Sam. Yes, cultural values and language barriers do affect
whether someone begins the journey of seeking support. Oftentimes, someone
may not seek support because they're unaware that the support
is out there. And other times it's likely because that
expectation to care for your parents, for instance, is passed
down from the generations before, and perhaps the carer may
(17:43):
not seek support because they have seen carers within their
own extended family network perform the caring role solely by themselves,
without external support or help. So, for example, caring is
definitely seen as a responsibility in many eastern cultures and
often there can be unspoken expectations placed on the carer
(18:06):
that they may not even know themselves. So you have
to care for me now because I cared for you
when you were a child. That is very common, and
it's often tied in with, um, how respect is shown
in the eastern culture. And even there's various degrees of,
of these expectations and comments such as, um, I had
(18:26):
you so that you can care for me in my
old age is not an uncommon statement, Sam. Um, which
it's quite confronting particularly obviously, this can be really, really overwhelming,
particularly if the carer is part of the sandwich generation
where they are caring for their elderly parents, which has
been thrust upon them from the generations before them, from
(18:49):
the cultural sort of expectation. Um, as well as then
they've got the role of caring for their own family.
S1 (18:55):
Adam, I'm interested in your perspective. Specifically, how is Carer
Gateway working to connect with carers in multicultural or regional
communities who might not realise this support is for them?
S2 (19:12):
Sam, it's um, one of the things that we never
expect is that carers are necessarily going to just come
to us and access services, we understand. Um, and a
big part of the work, I suppose, we do in
our work, but also in our partnership work with, with
Vision Australia is we I think we collectively share that
understanding around intersectionality as well, all those factors of disadvantage
(19:34):
that people face and how that can have flow on
effects to. Yeah. Accessing the services that they potentially need
and creating some inequities in in our, in our systems
as well. So I guess one of the things that
I know we've done over time, um, with our partners,
including Vision Australia, is look at outreach activities and engagement activities,
not just in our metropolitan regions, but also right across
(19:56):
our our regional and remote areas of of Victoria. We
will work, as I said, with, with, with our partners
in potentially co-presenting on on particular topics which, which may
resonate with particular populations or communities in particular areas. So
we're able to, as I said, able to work with
our partners, um, work with Vision Australia, but also work
(20:16):
with our, I suppose, across our consortia as well in
in Carer Gateway to be able to um, to, to
deliver that. So I think that notion of going to
those areas of need and having a presence and building
that trust is really, really important. Probably the second thing
that I would raise in this space as well, is
that from a continual focus for Kerry Gateway, we are
(20:40):
we are continuing to look at ways that we can
better connect with people who haven't accessed our services before.
From your listeners perspective as well, and from a Vision
Australia perspective, part of our collaboration and partnership is to
look at ways that we can connect with carers who,
as I mentioned earlier, don't necessarily identify themselves as carers.
(21:00):
We do really try and make sure that within our
services that we've got the ability to yeah, to have
the space to be able to provide that, that, that,
that key support. And that's something that we're, we're we're
constantly working on different strategies, I suppose, around in terms
of the way we're, um, we're set up as well.
We've got um, in terms of our promotional information, the
materials that we, we have that promote what we do.
(21:22):
So it could be our flyers, it could be information sheets,
for example. We'll make sure that they're, um, translated into
other common languages. So it is easily understandable for our
our diverse communities. We use, for example, interpreting services when
we need to, as well to support the services that
we deliver. And even from a from a workforce perspective,
(21:45):
we you know, we have a percentage of our workforce
that are bilingual as well. So, you know, speaking languages
other than English as well. So again, we've we've got
the ability to be able to build that trust and
connect with with our diverse communities.
S1 (21:58):
Adam, I'll stay with you. What's been done to make
sure the support provided is genuinely respectful, accessible and relevant
to each community's needs?
S2 (22:08):
Yeah. So again, I was just talking a little bit
about workforce. And and one of the things that we'll
always ensure is to make sure that our workforce is
appropriately trained and upskilled in, for example, cultural training and
cultural sensitivity training and trauma informed training as well. We
always find, um, that's a that's a really good start
in terms of making sure we've got consistency across the way.
(22:29):
I suppose we're approaching just our day to day conversations.
In terms of carer gateway perspective, one of the things
that we really focus on with our model and in
terms of the way we work, when someone does contact
Carer Gateway for for the first time, we really focus
on a carer centred approach to what we do. So
(22:53):
when we, for example, go through what we call a
carer star, which is central to our our model of support,
we really focus on, um, understanding the carer goals and
the carer needs and it's a holistic assessment, I suppose
that we do, we make sure that's in the carers
words I suppose, as well when we approach that. So um,
(23:14):
it's understandable, but really what we're focusing on there is
all aspects of a carers wellbeing. What that carer star
then allows us to do is to work with the
carer to identify which services as part of carer gateway
are going to best support that carer for their needs
at that particular time. We also have tailored packages of
(23:35):
support that we can look at, providing some initial initial
capacity building or taking some stress off. I suppose for
the carer in those initial stages that we can look at,
we've got planned and emergency respite as a service through
the Carer Gateway, and we also offer coaching as well
through the through the Carer Gateway as well. So there's
a gamut of of services on offer. I think the
(23:57):
key for me when I think about particularly that idea
of respect, it's really about and a respectful way of
approaching service, service delivery. I think it's really about making
sure we put the carer at the centre of the
care that we are, we are delivering, um.
S1 (24:11):
I want to tackle that stress and that feeling of
being overwhelmed. It's a bit of an unspoken kind of
aspect of the caring experience. Quite often, where caring can
often feel like you've suddenly become a full time coordinator,
navigator and advocate all on top of everything else you're
(24:32):
trying to manage. Appointments, services. Decisions, often without much help.
The systems are complex. It's easy to feel overwhelmed, but
you don't have to do it all on your own.
That's the most important thing. So what do carers share
with you about the challenges of managing different services and
(24:52):
support systems?
S4 (24:53):
Thanks, Sam, and you're exactly right. People do feel overwhelmed.
They're not quite sure what all the services that they're
entitled to and how they all fit in and in
terms of also cost and availability near and around them.
As we know, there's many aged care services, but there's often, um,
(25:14):
time waits on some of those services in particular regions.
It's a bit of a minefield to to get through
all that. And I guess that's where our programs can
really help somebody by talking through all the services that
that they can receive and what that means for them.
And we often spend time warm transferring clients to my
(25:37):
aged care and the different services to help them access
those services, because it can be, as you said, extremely overwhelming.
And sometimes they just need some support and a bit
of a helping hand from someone who understands it and
connect them with what they're hearing that they that they need.
(25:57):
It can also be very overwhelming for the supporter, family member,
the carer, because the person in our case the vision loss,
they need to accept that help and services. So what
we do here sometimes is family member will say that
the client says, oh well, my partner or my spouse,
they can drive me to the appointments. I don't need
transport assistance. But that's sometimes without considering or recognizing that
(26:22):
potentially that supporter or carer doesn't feel confident, or often
they have their own health conditions, as I said previously,
and therefore that doesn't come easy to them. It's about
sometimes also the person with the vision loss accepting what's
out there for them, so that that will also help
the person who is providing the care to them.
S1 (26:43):
Adam, how does Carer Gateway support carers who are feeling overwhelmed,
whether that's through coaching, emotional support or simply helping them
figure out what to do next?
S2 (26:55):
I can really resonate around those comments about particularly, um,
I think the aged care system at the moment. I think, um,
we can understand that carers who are caring for somebody
who is also accessing the aged care system, um, and
supports through their or even NDIS, through um, through the, the,
the disability system at the moment that there's a lot
(27:18):
of change that's happening at the moment. There's been obviously
reform as well that's still ongoing in the aged care space,
and those changes can put increased pressure on on navigation
in general. But it's often the carer who actually bears
the brunt of that. Those changes. They're the ones who
have to often get their head around, um, what that
(27:40):
change is how they can ensure that the person that
they are caring for is still getting the support that
they need. So that in itself, um, when we're going
through change in, around these different systems, um, it can
really have that flow on effect. So I guess one
of the things that we do at Carer Gateway is
we try and um, first and foremost stay up to
(28:01):
date with those, those changes. So at different points through
our carer journey, if we've got the opportunity to be
able to provide some, even if it's just some basic
information about those, um, about those different intersecting systems, or
it might be just knowing about the different services that
are out there at the local level that actually can
add or provide additional support for carers to build their
(28:25):
capacity to be able to support better support the person
they're caring for. It's often those avenues that we, I suppose,
that we look at in terms of when we see
the the presentations of someone being quite overwhelmed. Um, you
mentioned Sam coaching before. So again, being able to, um,
have the opportunity to link somebody in with a what
(28:46):
we call a carer coach to really focus on building
their capacity in their caring role is something that we
look at doing. And that and we often find that
has positive impacts on on those feelings of being overwhelmed.
I suppose depending on the level of stress that someone
might be feeling with some of those system changes, the
(29:06):
type of caring role they're in. I mentioned before about
planned and emergency respite as well. So that is something
that we can look at to actually if if someone
is impacted to a point where they need a, they
simply need a break from their caring role. Um, we
can look at putting supports in in around that as well.
The final point I'd make is and just to reiterate,
I think from a service navigation point of view, I think, again,
(29:30):
looking at the different ways that we can connect across systems,
but also the different ways that we can connect as partners.
So again, looking at, um, from a whole step health and,
and from a um, Vision Australia perspective, looking at those
opportunities to be able to provide more seamless support. Again,
it's another example of where there's so much yeah, so
(29:51):
much opportunity, I suppose, in this space to make that
outcome much better for not just the carer but also
the person they're caring for.
S1 (29:57):
Debbie, I'll come to you very shortly, um, to have
a bit of a chat about how holistic health and
Vision Australia can work together to better advocate for carers
of people caring for someone who is blind or has
low vision from communities who face Extra barriers to support,
particularly in multicultural First Nations, LGBTQi+ or rural and regional settings.
(30:23):
And Debbie, after we come to, you will also open
the floor to Megan and Adam in case they want
to jump in and contribute.
S3 (30:31):
Thanks, Sam. Yes, Vision Australia will definitely continue to collaborate
with Whole Step Health to raise awareness within our blind
and low vision community of the available service and supports
out there that are available for carers. And we have
been definitely referring a lot of our carers of our blind,
low vision clients to Carer Gateway and Whole Step Health,
(30:54):
because we know that they are keeping abreast with all
the changes that are happening right now, and also being
proactive in working with organisations that can provide these sort
of supports to our carers. We ourselves will continue to
identify opportunities to work with other organizations who are also
passionate about the same cause. In this interview, I think
(31:16):
we're doing Adam, today is a great demonstration of the
power of collaboration. Sam. So yeah, we will continue to
find opportunities to work together to, to, um, enable this
for our carers.
S1 (31:28):
Okay. Um, Megan, did you have anything to add there?
S4 (31:31):
Um, the way I see it with Carer Gateway is
with the check in and chat for families and supporters.
Our main focus with that. And, um, as I said before,
it came from the research that when we interviewed, um,
our carers, their main goal, what they wanted was to
have the skills, the tips and the strategies, the knowledge
(31:53):
to be able to provide support to, um, assist and
support their loved ones. So that's our main focus in
the programme, and it's great for us to have Carers
Gateway that we can refer to to ensure that the
carers and the supporters really gain all the other kinds
of services that that are on offer from Carers Gateway,
(32:16):
including that great emotional support for them. So while we
obviously do lend a listening ear and can guide them
and provide empathy and obviously have a conversation, we would
look to refer our supporters and family to Carers Gateway
to gain that emotional support for them.
S1 (32:36):
Adam, what's your perspective from the whole step health side
of things?
S2 (32:40):
Yeah, it's interesting just in terms of reflecting on what
Debbie and Megan have touched on there. I think from
our perspective, particularly, those referral pathways really resonate for us.
And I think with any partnership, one of the things
that we really focus focus on is that two way
partnership as well. Um, because there's always a really strong opportunity,
I suppose, from our end, obviously, to provide the support for,
(33:02):
for carers, but also from our end, just recognising the
vital support that, um, that Vision Australia is actually providing
for people who are blind or have low vision. I
think that's for our from our end as well. It's
it gives us from a health perspective, it really helps
us to make sure that anybody that does require that support,
(33:23):
we can always link them, link them back in through
through Vision Australia services as as well. So for me
those referral pathways, it's really about that to that that
two way partnership from our end as well. But also
I think, um, one of the things that really stands
out to me is about, um, drawing on both organisations strengths.
When I think about and we think a lot from
(33:45):
a carer gateway perspective, obviously about about the carer, I
think when we're when we're truly collaborating and we're coming
together and partnering, the benefit of that is actually not
just for from our, not just for the carer, it's
actually also for the person receiving the care, but actually
for that network as well. Yes. So so you know,
whether it's it's family, it's close friends. It just makes
(34:07):
sure you've got a really holistic approach to care and support.
S1 (34:11):
And let's have a bit of a chat about looking
after the carer. Now it's easy if you're a carer
to put yourself last, but your wellbeing does matter as well,
so you don't have to wait for a crisis to
get help. And Megan, this is where I want to
come to you. What are some of the early signs
that a carer might be struggling emotionally, even if they
(34:33):
don't realise it yet?
S4 (34:35):
Yeah. Thanks, Sam. So there's many warning signs. These can
be feeling unhappy or depressed, feeling anxious or worried. You
may be having some angry or emotional outbursts. There may
be alcohol or substance abuse, changes in appetite or weight,
withdrawal from friends or family, and socially isolating yourself, feeling
(35:00):
worthless or guilty, and increased tiredness sleep problems, changes in behavior.
They're all, I guess, common symptoms that we do see.
S1 (35:09):
Adam, I'd like to just, um, come to you now.
Based on what you hear from carers, which carer gateway
services tend to make the biggest difference to their wellbeing,
especially once they start using them.
S2 (35:23):
In the wellbeing space? To an extent, depending on on
carers particular presentation and what we've assessed in terms of
their needs, all of our services can play a positive
role in, um, in supporting someone's wellbeing in general from
an initial standpoint that often the carers, the the tailored,
(35:45):
tailored packages that are that are on offer through the
carer gateway is a really good way of putting some
day to day supports in place, and often it's just
small changes that we can really affect on a daily
basis through those support, um, support packages that make a difference.
So a couple of examples might be support around transport,
for example, it might be some support around or cooking
(36:07):
and cleaning, as another example. Or it might even just
be some support around personal hygiene as well. And capacity building,
I think is the other thing that that that really
stands out to me with that as well. So we
do see on, on, on occasion that we have carers
accessing those support, those tailored support packages that we support
with equipment. It might be around employment support, it might
(36:28):
be around education, um education support as well. So it's
it's really focused on a taking the pressure off the
carer on their day to day. Um, from their, I suppose,
their day to day role and their caring role, but
also um separate to that is it's that capacity building
side of things as well. Because from a wellbeing perspective,
one of the things that we hear a lot when
we speak to carers is that they almost have to
(36:50):
put their life on hold. It's a very selfless situation
and selfless approach, but often giving them some support or
giving them some allowance. I suppose to know that it
is okay to continue to find ways to to look
after yourself and to continue to progress your yourself and
your own, your your own needs and put that that
(37:11):
at the forefront as well is really important because the
flow on effect to that in terms of wellbeing is
if the carer is in a better emotional, physical, social,
mental state, generally their ability or their capacity to care
also improves. So it's almost trying to provide those initial
supports to flip that narrative a little bit for for
for carers.
S1 (37:31):
Before we wrap up, I'd just love to focus back
on the collaboration between Holistic Health and Vision Australia. And Debbie,
I'll start with you here. How does this collaboration between
Holistic Health and Vision Australia help provide more connected, meaningful
support for carers and families?
S3 (37:52):
Collaboration is crucial Sam. In partnership, we can ensure that
the support and services provided are holistic, which is what
Adam mentioned earlier, and that they're meaningful and relevant at
the time that is needed so we can focus on
our own strengths. Again, something that Adam did mention earlier, um,
and we completely agree. Um, we can focus on our
(38:13):
own strengths and how we provide that support for the
carers and their families, recognizing that the needs of the
carer and their families will continue to evolve over time
as they journey through the different stages of their lives
and in our case, the journey of the low vision diagnosis.
S4 (38:32):
I was just thinking as Adam was talking and he
is right, it's that caring is so selfless, you know,
talking about making sure that carers and supporters have got
their own activities and do have good wellbeing themselves is
absolutely imperative for them to then support the person with
vision loss. So our over 65 programme for the supporters
(38:56):
and family members is based around our client with vision
loss goals. But how I see it connecting is that
by focusing on our clients with vision loss, looking at
their meaningful activities, and if the client is doing those
meaningful activities, what we're hoping to see is that then
that allows for their carer or their supporter to be
(39:18):
able to have those services in place so that then
they might be able to get a rest. You know,
the transport is maybe potentially one way. So by using
some of the transport that is available that can free up,
then the carer or the supporters time that maybe someone
else or a service is taking the person with vision
(39:39):
loss to an appointment or to a social activity, and
hopefully then that's freeing up some time for the carer
or the supporter to spend that time looking after themselves.
S2 (39:50):
Yeah. And I suppose from my perspective it's just really, um, um,
backing up everything that's been said just resonates, I think, with,
with myself and obviously, um, from a, from a whole
step health perspective as well. I think we've already spoken
about the importance of of leveraging off both organizations strengths. Yeah.
Which I think is really crucial. Um, I think the
(40:11):
opportunity to continue while we've got referral pathways in place,
but to continue to build on that as well, to,
to strengthen those even more, it's only going to it's
only going to help to benefit those who are blind
or experiencing low vision. But also it's only going to
benefit carers as well. So it's again, I think we
mentioned before about that holistic approach, it's only going to
it's only going to enhance that I think as well.
(40:33):
So and again I see it as, as we've got two,
two organisations here with almost specialist services and perspectives and
it's just bringing those together.
S1 (40:42):
Adam, staying with you, what do you hope this partnership
will continue to deliver for carers and across Victoria, especially
those in rural or culturally diverse communities.
S2 (40:53):
The message for me is quite simple but quite powerful,
I think. We continue to look at from a partnership perspective.
How can we continue to support as many carers as
we possibly can, and also how can we continue to
to deliver those services and supports and raise that awareness
to carers in all communities across across the state to
(41:15):
actually be able to, to to get to them and
to be able to actually ensure that they are if
if someone out there is is a carer, they're actually
identifying themselves as a carer, a and then B that
they just know that support is out there and available
for them. Um, as, as, as well when they need it.
So I think the partnership here with, with Vision Australia
(41:35):
really it's, it's a pathway or it's a real opportunity
to open up some of those, those doors for carers
who potentially have an access services that they potentially need.
So yeah, for me it's it's really it's a really
powerful opportunity.
S3 (41:48):
When Adam spoke about the person centred approach That is
also our approach certainly is. Yes. Remind our listeners, we
we do well by listening to our clients. We would
continue to ask our clients to let us know how
their carer, how their carers are doing by telling them
and all of our clients about whole step health and
informing them of all the different supports and services that
(42:12):
are out there available for them to access by telling
our clients about our Quality Living program, also for carers.
I know Megan has mentioned our um family and supporters
check in and chat program, but we also have a
quality living program for carers, which is a safe forum
for carers to connect with others to identify the practical
(42:33):
and emotional challenges, to share and learn strategies to support
their loved one. To live confidently with vision loss.
S1 (42:41):
Megan, I think Debbie's covered quite a lot of this
really well just now, but um, I'm just ask the
same question to you. Looking ahead.
S4 (42:49):
The collaboration will be terrific. Just to ensure, you know,
both clients and the carer are receiving all the services
and supports that are out there for them. So for
both to have, you know, improved or enhanced their wellbeing,
to know of these services and to embrace them.
S1 (43:09):
If you've seen yourself in this conversation or you've thought
of someone you care about, now's the time to reach out.
If you're supporting someone with vision loss, you might be
a carer and that means you deserve support as well.
Carer Gateway and Vision Australia are here for you. Now Adam,
on that topic, for anyone listening today who feels they
(43:30):
might be in a carer role, where can they begin
if they want to connect with carer Gateway?
S2 (43:36):
So in terms of um information we've got our Carer
Gateway website which um, everybody is welcome to, to visit,
which has a suite of information about the services that
we have on offer and resources available as well. So
that's WWE gateway. Another really simple way to reach out
(43:56):
is via our one 800 number, which is 1800Â 422Â 737. And again,
if you call that number, someone on the other end
of that, that line will be able to provide you
with some really quick some really basic information about about
eligibility as well. And then from there we can connect
you into, you know, your local, local, um, region to
(44:18):
access services.
S1 (44:19):
Fantastic. And Megan, what message would you like to leave
carers with today, especially those who might be listening quietly
and haven't asked for help yet?
S4 (44:28):
Yes. So I would encourage, um, we are very excited
about our new check in and chat program and opening
that up for family and supporters. And as I said,
it does come from feedback that had been received up
to about two years ago which identified that many of
our clients carers wanted a programme, or they wanted support
(44:51):
to give them the tips and strategies to. To support
their loved one or their person living with vision loss. Please,
if you feel that you would like to gain some knowledge,
understand what the client is going through, um and how
you can help them, but also then get help yourself.
We are here for that. So please reach out to
(45:14):
Vision Australia.
S1 (45:15):
And Adam, I understand there's a final point you just
wanted to raise.
S2 (45:19):
There is no referral that is actually required for Carer Gateway.
I think that's an important one to to point out that, um,
we really try and make sure that those access barriers
are really knocked down to make ease of access, um,
right at the forefront. And also the support that we
do offer through Carer Gateway is not it's not means tested.
So our services are essentially open to anybody in a
(45:41):
caring role, no matter how big or how small that
caring role feels.
S1 (45:45):
And you can of course call carer gateway on one
804 2737. That's one 804 2737. That number Adam's given
there or visit the website gateway carer gateway or one
word gov. And you can also connect directly with us
(46:06):
at vision for culturally inclusive and practical support. Because there
is support, there is hope and there is a whole
community ready to walk beside you. I've been speaking today
with Megan, Debbie and Adam collaborating between Carer Gateway and
Vision Australia to provide vital services for carers of persons
(46:29):
who are blind or have low vision around Australia. Thank
you everybody for your time today. It was great to
catch up with you and have a chat all about
the collaboration and all the best for the future.
S2 (46:40):
Thank you. Thank you.
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