July 22, 2025 • 28 mins
Sam is joined by Adam Demirtel from Holstep Health alongside Debbie Loke and Megan Kohlhagen from Vision Australia to discuss Carer Gateway, an Australian Government program providing free services and support for carers.
We also feature another piece in conversation with optometrist and low vision specialist Ian Bailey, this time covering his early years of research and lecturing in low vision at UC Berkeley.
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Episode Transcript
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S1 (00:21):
From Vision Australia. This is talking vision. And now here's
your host, Sam Colley.
S2 (00:31):
Hello, everyone. It's great to be here with you. And
for the next half hour, we talk matters of blindness
and low vision.
S3 (00:39):
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
take up a lot of time driving to appointments, social
events and engagement. And sometimes what we see is that
person that's having to take on those responsibilities may be
(00:59):
the same age as the person with the vision loss.
S2 (01:03):
Welcome to the program. This week we feature part of
a discussion with a couple of people from Vision Australia
Alongside somebody from a carer gateway. Speaking about the services
and collaboration between the two organisations to provide caring and
(01:24):
support services for carers of people who are blind or
have low vision. That conversation is coming up very shortly
so make sure to stick around. And then after we
hear from Meagan, Adam and Debbie, I caught up with
Ian Bailey again to hear about his time at Berkeley.
(01:46):
I hope you enjoy this week's episode of Talking Vision.
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 realise their carers.
They just see it as part of family life. But
(02:08):
support is out there for them too. And joining me
are Adam Myrtle Mertel from Whole Step Health and from
Vision Australia's wellbeing team. Debbie Loke and Megan Kohlhagen. Welcome
everyone now. Firstly, Adam, let's start with you. Could you
tell us a bit about your role at Holistic Health
and the work you lead with carers?
S4 (02:28):
Yeah. Thanks, Sam. So, um, as you mentioned from the top,
my name is Adam Demurral. I'm the director of carers, um,
at Carer Gateway, uh, and at Holistic Health. So, um,
one of the key aspects of my portfolio is to
oversee the Carer Gateway service operations across the state of Victoria. Um,
Whole Step Health is the lead agency for carer gateway services,
(02:49):
and we partner with six other agencies to deliver carer
gateway services. So that includes um Alfred Health. It includes
Uniting Barwon, it includes Grampians. It includes um Bendigo Health
and it includes family care. So we're we're a consortia
of seven providers in total. And we deliver services across
both the metropolitan regions and the regional areas right across
(03:11):
the state from a carer gateway perspective. Our role is
essentially to deliver free services and supports for unpaid carers,
and there's statistics out there that indicate that up to
1 in 10 Australians are carers at any one time,
and we know the important role that carers play in
supporting people who need care and the role and the
(03:32):
benefit that that adds to our overall health system and
more broadly, our economy as well. So it's a really
important service that we deliver. And being here today to
talk about Carer Gateway and the services we offer, but
also the partnership that we're working on with a valued
provider such as Vision Australia. It's really exciting to be here.
S2 (03:49):
And 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 wellbeing team and who you work with.
S5 (04:01):
Yes. Thanks Sam for the opportunity. 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
(04:22):
or have low vision to live 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. Sam.
S2 (04:32):
Perfect. And, Megan, I'll come to you and get your standpoint.
S3 (04:36):
Thanks, Sam. So thank you for having me today. And
I have the absolute privileged role of team lead of
the wellbeing team at Vision Australia, working very closely with Debbie.
And we deliver the check in and chat program for clients.
And now also our most recent edition of Family and Supporters.
(04:57):
Essentially anyone who provides some form of care 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.
S2 (05:14):
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
(05:34):
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
(05:55):
are under pressure. So what kinds of support are they
often providing, sometimes without realising it counts as caring.
S4 (06:03):
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 and just for
your audience as well. It carries 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,
(06:24):
addiction or it also could be due to aging. Um,
so it's important to note that carers do come from
all walks of life. Um, 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,
(06:46):
or even close friends and neighbours who may be quietly
helping out day to day. You you can essentially be
a carer at any, any age and any stage of life.
We often hear carers say I'm just doing what anyone
would do for family, but often, um, what we see
carers doing is managing medications, for example, attending appointments, helping
(07:09):
with transport, 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
(07:31):
of preparing daily meals, there's also 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 making sure that their loved one feels safe
and not alone on a day to day basis. So
we find that carers will often not call themselves carers
or see themselves as carers, but they are, if they
(07:53):
are undertaking these daily activities and supporting the needs of
someone who really needs it. And being able to recognise
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 to feel less alone.
S2 (08:12):
Okay. Now, in your work with Vision Australia, what does
caring for a person with blindness or low vision typically
look like day to day, emotionally and practically? And why
do so many carers go unrecognized?
S5 (08:27):
Megan's going to take this one.
S2 (08:29):
Yeah. Okay, Megan, go for it.
S3 (08:30):
Thanks, David. And I think, um, it's probably already been
given a great summary, but I guess just to reinforce. Yes,
what we do see is 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
(08:53):
on the person with vision loss, but also that carer
or supporter. It does take up a lot of time
driving to appointments, social events and engagement, and sometimes what
we see is 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.
(09:17):
So suddenly they're put 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 on them. And what we
(09:40):
do see a lot is around that responsibility, which has
already been 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 this is what we see typically
(10:03):
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 not have previously ever engaged in before.
S2 (10:25):
All right. Now, Adam, this is 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?
S4 (10:44):
Yeah, Sam, I think in particular, one of the and
the straightforward answer to this question is really that if
someone does recognise 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. I think 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 really recognising the
(11:07):
pivotal role that carers are playing. I think 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 know to pick up the
(11:29):
phone at that point, and they will be able to
connect them quite quickly and seamlessly to the supports that
they need. We at Carer Gateway are constantly looking at
different ways to 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 to as many carers as we can,
(11:51):
but there's also in terms of the effectiveness of the
services we can deliver as well, and we see this
across a lot of a lot of different industries. But
early intervention and being able to provide supports before stress levels,
for example, they get to a certain level where someone
is in quite, quite high levels of distress. Um, if
we can get to carers earlier and be able to
(12:13):
provide those early interventions, often in terms of an outcome,
we're able to see more, um, 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 time for carers, there are situations where caring is
not always necessarily a choice for somebody. Um, carers are
(12:36):
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
of emotions and that can actually have a longer term.
It can have quite an impact on on your physical health,
on your social health and on your mental health as well.
So there is a sense sometimes when we speak to
(12:58):
carers that before hearing about services like Carer Gateway, that
they may feel like they are on their own, they
are going through something that nobody else is or that
nobody else can actually relate to. 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
(13:19):
through something, something similar and then that flow on effect
of there are, um, quite structured supports that are available
for carers as well. Their focus is typically constantly on
the person that they are caring for and not on
themselves and their own health and wellbeing.
S2 (13:35):
And if you've seen yourself in this conversation or you've
thought of someone you care about, now's the time to
reach out. You can call Carer Gateway on one 800
427 37. That's 1800Â 427Â 337 or visit carer Gateway. That's carer gateway.
(13:58):
You can also connect directly with Vision Australia on one
384 746. That's 1300Â 847Â 466. Or head to our website at.
That's Vision Australia. I'm Sam Kelly and you're listening to
(14:27):
Talking Vision on Vision Australia Radio. Associated stations of Disability
Media Australia and the Reading Radio Network. I hope you
enjoyed that conversation there with Megan, Debbie and Adam. If
you missed any part of that chat or you'd love
to hear it again. Talking vision is available on the
(14:50):
podcast app of your choice or through the Vision Australia library.
And now it's my great pleasure to welcome back Ian
Bailey to the show. For people tuning in for the
first time in a little while. Ian Bailey is a
retired optometrist, teacher and low vision pioneer who I've had
(15:11):
the great pleasure of speaking with over the past little while,
and it's my great pleasure to welcome him back to
Talking Vision this week and welcome back. It's great to
have you here. Now, last time we got up to
around the mid 70s, you'd just landed back in California and, um,
(15:34):
were just about to begin your tenure at Berkeley, so
let's pick it up from there.
S6 (15:40):
Okay. Yeah. So when we arrived in Berkeley, it was
right at the start of 1976. And my family, my
wife and my two kids who were then six and eight,
were with us, and we weren't quite sure that we
wanted to stay in Berkeley for the rest of our
lives or in the United States for the rest of
(16:02):
our lives. So it was a fingers crossed sort of thing,
and I was a little bit nervous about starting something
of a career at UC Berkeley, because it's such a
sort of high level university, and it had a whole
lot of the people with highest reputation in optometry here
(16:23):
on the faculty. And I was just a young 35
year old guy who was feeling a bit insecure and nervous. Anyhow,
I had to begin teaching, and ten days after I
arrived and I had to teach the low vision course,
which was 30 lectures long. I had taught low vision
(16:47):
courses in Melbourne, but they were only for four hours long,
and so I had a lot of extra time to
fill in. But I also had a lot of knowledge
that I needed to, needed to put together in order
to to make a worthwhile cause. And as I began this,
(17:11):
I started to realize that even though I'd been imported
to University of California, Berkeley because of my low vision expertise,
I really didn't know what the hell I was doing.
I wasn't in in charge or in control of what
was going on. And so I did a lot of
(17:32):
working out of how low vision Aids work and how
they should be prescribed. And up until this time, nobody
had ever really found out the details of understanding how
low vision aids work in detail, what they're really doing.
Most people who were prescribing low vision Aids at the time,
(17:54):
and that would have included me, were prescribing them, as
we used to sometimes call it, cafeteria style. You'd say,
why don't you try this one? If that doesn't work,
let's try something that might be a little bit better,
and we won't quite understand why there are differences and
how there are differences, and how you need to get
closer to this one and further back from the other one.
(18:16):
We'll just sort that out as we go. And if
you understand the optics of it all, you can get
much better control, get much better prediction, do much more
accurate prescribing. You end up more confident in what you're doing.
The patients end up seeing that you know that this
one's going to require a different way of using using it.
(18:40):
You've got to sit back for this one. Sit closer
for the other one. This gives you a larger field
of view. This one gives you a smaller field of view. Patients,
I think, seem to appreciate being told of what differences
to expect as you went from one low vision aid
to another. And so I wrote about 40 papers in
an optometric magazine or magazine journal about different ways of
(19:05):
measuring low vision aids. Because the manufacturers didn't tell you
how the low vision aids worked, they didn't give you
information that allowed you to know what you were asking
the patient to do when you looked into them. They
just said, this one, we're going to call for X
and we'll call the other 16X. And some manufacturers would
(19:25):
call a 20 diopter lens five x. Others would call
it six x. So having a control and understanding of
how low vision Aids worked was very, very important. And
I think it made a huge difference to the way
low vision was being done and how it's still being
done now. I think it made an enormous difference, and
(19:49):
a lot of the foundations of that were formed in
my first year of teaching at University of California, Berkeley.
But over the next 6 or 8 years I made
some changes and wrinkles and develop some methods for getting
to understand and check low vision aids. And I try
(20:10):
to develop methods that didn't require expertise or special equipment,
but clinicians could use and use quickly so that if
a patient came in with a low vision aid that
the clinician didn't know about. I wanted to have methods
that would make it easy for the clinician to find
out what needed to be known about the magnifiers or
(20:33):
the devices that they were using. Another related area was
I did a lot of stuff with telescopes for the
visually impaired that in the United States it was relatively
new that people were prescribing bioptic telescopes for driving. These
are telescopes that are mounted in a spectacle frame and
(20:57):
the mounted in the top part of the spectacle lens.
And so when the person's driving, there, not looking through
the telescope. However, when they see something of interest, like
a traffic light or a freeway sign or something like that,
they lower their head down and look through the telescope,
get the magnified view, read the sign, or look at
(21:20):
the signal. Or sometimes you might be just looking at
the scenery or a pedestrian or something like that. But
people can will take a brief glimpse through the telescope
and then tilt their head back so and so that
they're not looking through the telescope. And so 99.9% of
the time they're not driving using the telescope. The telescope
(21:43):
is just high in the spectacle frame. And they bring
their head down to look along the axis of the telescope.
And so I did a fair bit of work looking
at different ways of measuring different telescopes and identifying what
they do and what they're focusing range was and a
whole lot of stuff like that. And so there was
(22:04):
this thing with low vision Aids. Understanding what they do,
understanding the optics and developing methods for testing and identifying
the important features of magnifiers and telescopes and other optical aids.
In Melbourne, I had done a little bit of work
with contrast sensitivity, and contrast sensitivity was something that clinicians
(22:28):
hadn't been measuring up until the 70s, and I was
lucky enough when I was at the National Vision Research
Institute in Melbourne, to have some really good equipment for
measuring contrast sensitivity. So I knew a lot more about
contrast sensitivity than most clinicians. And we developed a couple
of tests for contrast sensitivity. Well, in the early days
(22:53):
at Berkeley, and looking at relationships between contrast, sensitivity and
mobility was something that we did some research into. I
had some fairly good expertise in measuring contrast sensitivity in
a laboratory sort of way. It wasn't a clinical method
that that we'd been using for research, but we developed
(23:14):
a couple of tests for contrast sensitivity that were simple
and suitable for clinical application. We did some research that
other people hadn't done before, looking at mobility and the
way mobility depends on visual acuity, on contrast sensitivity and
(23:36):
on visual fields. And with a graduate student, we did
some research on that, which was quite novel and new
at the time. We also started getting involved in testing
the vision of visually impaired children round about 1980 1981.
(23:57):
Amanda Hall or Amanda Lewis as she now is, joined
our faculty and Amanda had done a PhD in special education,
and she came to join us at the School of Optometry.
And she had done about three years at the California
School for the blind, and she set up a program
(24:18):
by which kids attending the California School for the blind
and other kids who would spend two weeks getting a
sort of a broad spectrum assessment of their capabilities, conducted
by the California School for the blind as part of
the overall evaluation of their functional abilities. Amanda was bringing
(24:39):
the kids to our clinic, and so we had to
develop methods and develop tests that we used for assessing
the vision of kids. This was a lot of fun
for me because Amanda and I got along very well,
and she knew something about the kids and had seen
them functioning in their school environment before the kids came
(25:02):
to see me, so she could suggest things to me.
And we we just played off each other. Mhm.
S2 (25:09):
Yeah. This is my favorite part. Yeah.
S6 (25:11):
Yeah. It was terrific fun. And so you know we
did a contrast sensitivity test for kids and the Mister
Happy test. There was a similar test. Um Leah Haven
and Heidi. Heidi. She called her test, but it was
basically a test that followed hours and tests for visual
fields and a couple of tests for visual acuity that
(25:33):
we put together for testing the vision of visually impaired kids.
And most a lot of those kids were multi-handicapped, too.
And so it was not just vision that you were
having to deal with, you're having to deal with a
whole lot of communication and participation issues that were tough
but fun to deal with, you know, um, it was
(25:53):
a great time.
S2 (25:55):
And there's also the Froot Loop or the cheerio, whichever.
S6 (25:58):
Yes. Yeah. That's right. Yeah. The the so called so-called
cheerio test. We put that together, and that came out
of just observing one patient who was just so anxious
to perform the task. She was standing on the foot.
Rest of the clinical chair had her hands behind her,
holding onto the armrest, but she was leaning forward at
an angle of about 45 degrees so she could get
(26:20):
closer to the chart or the targets that we were
showing her. And I said, oh, we need to incentivize
these kids to work hard and to get a reward.
And initially we said, why don't we use lifesavers or
something like that every time the kid gave a response
or to keep the kid interested in getting rewards? Why
(26:40):
don't we use lifesavers? But we soon realized that lifesavers
get one in your mouth and it lasts for ages.
We needed something that would dissolve very quickly, so we
used Cheerios and so we put the cheerio test together.
S2 (27:01):
And that's all the time we have for today. You've
been listening to Talking Vision. Talking vision is a Vision
Australia radio production. Thanks to all involved with putting the
show together every week. And remember, we love hearing from you.
So please get in touch any time on our email at.
(27:24):
That's all. One word at Vision Australia. But until next
week it's Sam Corley saying bye for now.
S1 (27:37):
You can contact Vision Australia by phoning us anytime during
business hours on one 384 746. That's one 384 74
six or by visiting Vision Australia that's Vision Australia.
From Vision Australia. This is talking vision. And now here's
your host, Sam Colley.
S2 (00:31):
Hello, everyone. It's great to be here with you. And
for the next half hour, we talk matters of blindness
and low vision.
S3 (00:39):
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
take up a lot of time driving to appointments, social
events and engagement. And sometimes what we see is that
person that's having to take on those responsibilities may be
(00:59):
the same age as the person with the vision loss.
S2 (01:03):
Welcome to the program. This week we feature part of
a discussion with a couple of people from Vision Australia
Alongside somebody from a carer gateway. Speaking about the services
and collaboration between the two organisations to provide caring and
(01:24):
support services for carers of people who are blind or
have low vision. That conversation is coming up very shortly
so make sure to stick around. And then after we
hear from Meagan, Adam and Debbie, I caught up with
Ian Bailey again to hear about his time at Berkeley.
(01:46):
I hope you enjoy this week's episode of Talking Vision.
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 realise their carers.
They just see it as part of family life. But
(02:08):
support is out there for them too. And joining me
are Adam Myrtle Mertel from Whole Step Health and from
Vision Australia's wellbeing team. Debbie Loke and Megan Kohlhagen. Welcome
everyone now. Firstly, Adam, let's start with you. Could you
tell us a bit about your role at Holistic Health
and the work you lead with carers?
S4 (02:28):
Yeah. Thanks, Sam. So, um, as you mentioned from the top,
my name is Adam Demurral. I'm the director of carers, um,
at Carer Gateway, uh, and at Holistic Health. So, um,
one of the key aspects of my portfolio is to
oversee the Carer Gateway service operations across the state of Victoria. Um,
Whole Step Health is the lead agency for carer gateway services,
(02:49):
and we partner with six other agencies to deliver carer
gateway services. So that includes um Alfred Health. It includes
Uniting Barwon, it includes Grampians. It includes um Bendigo Health
and it includes family care. So we're we're a consortia
of seven providers in total. And we deliver services across
both the metropolitan regions and the regional areas right across
(03:11):
the state from a carer gateway perspective. Our role is
essentially to deliver free services and supports for unpaid carers,
and there's statistics out there that indicate that up to
1 in 10 Australians are carers at any one time,
and we know the important role that carers play in
supporting people who need care and the role and the
(03:32):
benefit that that adds to our overall health system and
more broadly, our economy as well. So it's a really
important service that we deliver. And being here today to
talk about Carer Gateway and the services we offer, but
also the partnership that we're working on with a valued
provider such as Vision Australia. It's really exciting to be here.
S2 (03:49):
And 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 wellbeing team and who you work with.
S5 (04:01):
Yes. Thanks Sam for the opportunity. 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
(04:22):
or have low vision to live 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. Sam.
S2 (04:32):
Perfect. And, Megan, I'll come to you and get your standpoint.
S3 (04:36):
Thanks, Sam. So thank you for having me today. And
I have the absolute privileged role of team lead of
the wellbeing team at Vision Australia, working very closely with Debbie.
And we deliver the check in and chat program for clients.
And now also our most recent edition of Family and Supporters.
(04:57):
Essentially anyone who provides some form of care 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.
S2 (05:14):
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
(05:34):
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
(05:55):
are under pressure. So what kinds of support are they
often providing, sometimes without realising it counts as caring.
S4 (06:03):
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 and just for
your audience as well. It carries 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,
(06:24):
addiction or it also could be due to aging. Um,
so it's important to note that carers do come from
all walks of life. Um, 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,
(06:46):
or even close friends and neighbours who may be quietly
helping out day to day. You you can essentially be
a carer at any, any age and any stage of life.
We often hear carers say I'm just doing what anyone
would do for family, but often, um, what we see
carers doing is managing medications, for example, attending appointments, helping
(07:09):
with transport, 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
(07:31):
of preparing daily meals, there's also 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 making sure that their loved one feels safe
and not alone on a day to day basis. So
we find that carers will often not call themselves carers
or see themselves as carers, but they are, if they
(07:53):
are undertaking these daily activities and supporting the needs of
someone who really needs it. And being able to recognise
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 to feel less alone.
S2 (08:12):
Okay. Now, in your work with Vision Australia, what does
caring for a person with blindness or low vision typically
look like day to day, emotionally and practically? And why
do so many carers go unrecognized?
S5 (08:27):
Megan's going to take this one.
S2 (08:29):
Yeah. Okay, Megan, go for it.
S3 (08:30):
Thanks, David. And I think, um, it's probably already been
given a great summary, but I guess just to reinforce. Yes,
what we do see is 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
(08:53):
on the person with vision loss, but also that carer
or supporter. It does take up a lot of time
driving to appointments, social events and engagement, and sometimes what
we see is 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.
(09:17):
So suddenly they're put 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 on them. And what we
(09:40):
do see a lot is around that responsibility, which has
already been 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 this is what we see typically
(10:03):
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 not have previously ever engaged in before.
S2 (10:25):
All right. Now, Adam, this is 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?
S4 (10:44):
Yeah, Sam, I think in particular, one of the and
the straightforward answer to this question is really that if
someone does recognise 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. I think 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 really recognising the
(11:07):
pivotal role that carers are playing. I think 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 know to pick up the
(11:29):
phone at that point, and they will be able to
connect them quite quickly and seamlessly to the supports that
they need. We at Carer Gateway are constantly looking at
different ways to 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 to as many carers as we can,
(11:51):
but there's also in terms of the effectiveness of the
services we can deliver as well, and we see this
across a lot of a lot of different industries. But
early intervention and being able to provide supports before stress levels,
for example, they get to a certain level where someone
is in quite, quite high levels of distress. Um, if
we can get to carers earlier and be able to
(12:13):
provide those early interventions, often in terms of an outcome,
we're able to see more, um, 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 time for carers, there are situations where caring is
not always necessarily a choice for somebody. Um, carers are
(12:36):
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
of emotions and that can actually have a longer term.
It can have quite an impact on on your physical health,
on your social health and on your mental health as well.
So there is a sense sometimes when we speak to
(12:58):
carers that before hearing about services like Carer Gateway, that
they may feel like they are on their own, they
are going through something that nobody else is or that
nobody else can actually relate to. 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
(13:19):
through something, something similar and then that flow on effect
of there are, um, quite structured supports that are available
for carers as well. Their focus is typically constantly on
the person that they are caring for and not on
themselves and their own health and wellbeing.
S2 (13:35):
And if you've seen yourself in this conversation or you've
thought of someone you care about, now's the time to
reach out. You can call Carer Gateway on one 800
427 37. That's 1800Â 427Â 337 or visit carer Gateway. That's carer gateway.
(13:58):
You can also connect directly with Vision Australia on one
384 746. That's 1300Â 847Â 466. Or head to our website at.
That's Vision Australia. I'm Sam Kelly and you're listening to
(14:27):
Talking Vision on Vision Australia Radio. Associated stations of Disability
Media Australia and the Reading Radio Network. I hope you
enjoyed that conversation there with Megan, Debbie and Adam. If
you missed any part of that chat or you'd love
to hear it again. Talking vision is available on the
(14:50):
podcast app of your choice or through the Vision Australia library.
And now it's my great pleasure to welcome back Ian
Bailey to the show. For people tuning in for the
first time in a little while. Ian Bailey is a
retired optometrist, teacher and low vision pioneer who I've had
(15:11):
the great pleasure of speaking with over the past little while,
and it's my great pleasure to welcome him back to
Talking Vision this week and welcome back. It's great to
have you here. Now, last time we got up to
around the mid 70s, you'd just landed back in California and, um,
(15:34):
were just about to begin your tenure at Berkeley, so
let's pick it up from there.
S6 (15:40):
Okay. Yeah. So when we arrived in Berkeley, it was
right at the start of 1976. And my family, my
wife and my two kids who were then six and eight,
were with us, and we weren't quite sure that we
wanted to stay in Berkeley for the rest of our
lives or in the United States for the rest of
(16:02):
our lives. So it was a fingers crossed sort of thing,
and I was a little bit nervous about starting something
of a career at UC Berkeley, because it's such a
sort of high level university, and it had a whole
lot of the people with highest reputation in optometry here
(16:23):
on the faculty. And I was just a young 35
year old guy who was feeling a bit insecure and nervous. Anyhow,
I had to begin teaching, and ten days after I
arrived and I had to teach the low vision course,
which was 30 lectures long. I had taught low vision
(16:47):
courses in Melbourne, but they were only for four hours long,
and so I had a lot of extra time to
fill in. But I also had a lot of knowledge
that I needed to, needed to put together in order
to to make a worthwhile cause. And as I began this,
(17:11):
I started to realize that even though I'd been imported
to University of California, Berkeley because of my low vision expertise,
I really didn't know what the hell I was doing.
I wasn't in in charge or in control of what
was going on. And so I did a lot of
(17:32):
working out of how low vision Aids work and how
they should be prescribed. And up until this time, nobody
had ever really found out the details of understanding how
low vision aids work in detail, what they're really doing.
Most people who were prescribing low vision Aids at the time,
(17:54):
and that would have included me, were prescribing them, as
we used to sometimes call it, cafeteria style. You'd say,
why don't you try this one? If that doesn't work,
let's try something that might be a little bit better,
and we won't quite understand why there are differences and
how there are differences, and how you need to get
closer to this one and further back from the other one.
(18:16):
We'll just sort that out as we go. And if
you understand the optics of it all, you can get
much better control, get much better prediction, do much more
accurate prescribing. You end up more confident in what you're doing.
The patients end up seeing that you know that this
one's going to require a different way of using using it.
(18:40):
You've got to sit back for this one. Sit closer
for the other one. This gives you a larger field
of view. This one gives you a smaller field of view. Patients,
I think, seem to appreciate being told of what differences
to expect as you went from one low vision aid
to another. And so I wrote about 40 papers in
an optometric magazine or magazine journal about different ways of
(19:05):
measuring low vision aids. Because the manufacturers didn't tell you
how the low vision aids worked, they didn't give you
information that allowed you to know what you were asking
the patient to do when you looked into them. They
just said, this one, we're going to call for X
and we'll call the other 16X. And some manufacturers would
(19:25):
call a 20 diopter lens five x. Others would call
it six x. So having a control and understanding of
how low vision Aids worked was very, very important. And
I think it made a huge difference to the way
low vision was being done and how it's still being
done now. I think it made an enormous difference, and
(19:49):
a lot of the foundations of that were formed in
my first year of teaching at University of California, Berkeley.
But over the next 6 or 8 years I made
some changes and wrinkles and develop some methods for getting
to understand and check low vision aids. And I try
(20:10):
to develop methods that didn't require expertise or special equipment,
but clinicians could use and use quickly so that if
a patient came in with a low vision aid that
the clinician didn't know about. I wanted to have methods
that would make it easy for the clinician to find
out what needed to be known about the magnifiers or
(20:33):
the devices that they were using. Another related area was
I did a lot of stuff with telescopes for the
visually impaired that in the United States it was relatively
new that people were prescribing bioptic telescopes for driving. These
are telescopes that are mounted in a spectacle frame and
(20:57):
the mounted in the top part of the spectacle lens.
And so when the person's driving, there, not looking through
the telescope. However, when they see something of interest, like
a traffic light or a freeway sign or something like that,
they lower their head down and look through the telescope,
get the magnified view, read the sign, or look at
(21:20):
the signal. Or sometimes you might be just looking at
the scenery or a pedestrian or something like that. But
people can will take a brief glimpse through the telescope
and then tilt their head back so and so that
they're not looking through the telescope. And so 99.9% of
the time they're not driving using the telescope. The telescope
(21:43):
is just high in the spectacle frame. And they bring
their head down to look along the axis of the telescope.
And so I did a fair bit of work looking
at different ways of measuring different telescopes and identifying what
they do and what they're focusing range was and a
whole lot of stuff like that. And so there was
(22:04):
this thing with low vision Aids. Understanding what they do,
understanding the optics and developing methods for testing and identifying
the important features of magnifiers and telescopes and other optical aids.
In Melbourne, I had done a little bit of work
with contrast sensitivity, and contrast sensitivity was something that clinicians
(22:28):
hadn't been measuring up until the 70s, and I was
lucky enough when I was at the National Vision Research
Institute in Melbourne, to have some really good equipment for
measuring contrast sensitivity. So I knew a lot more about
contrast sensitivity than most clinicians. And we developed a couple
of tests for contrast sensitivity. Well, in the early days
(22:53):
at Berkeley, and looking at relationships between contrast, sensitivity and
mobility was something that we did some research into. I
had some fairly good expertise in measuring contrast sensitivity in
a laboratory sort of way. It wasn't a clinical method
that that we'd been using for research, but we developed
(23:14):
a couple of tests for contrast sensitivity that were simple
and suitable for clinical application. We did some research that
other people hadn't done before, looking at mobility and the
way mobility depends on visual acuity, on contrast sensitivity and
(23:36):
on visual fields. And with a graduate student, we did
some research on that, which was quite novel and new
at the time. We also started getting involved in testing
the vision of visually impaired children round about 1980 1981.
(23:57):
Amanda Hall or Amanda Lewis as she now is, joined
our faculty and Amanda had done a PhD in special education,
and she came to join us at the School of Optometry.
And she had done about three years at the California
School for the blind, and she set up a program
(24:18):
by which kids attending the California School for the blind
and other kids who would spend two weeks getting a
sort of a broad spectrum assessment of their capabilities, conducted
by the California School for the blind as part of
the overall evaluation of their functional abilities. Amanda was bringing
(24:39):
the kids to our clinic, and so we had to
develop methods and develop tests that we used for assessing
the vision of kids. This was a lot of fun
for me because Amanda and I got along very well,
and she knew something about the kids and had seen
them functioning in their school environment before the kids came
(25:02):
to see me, so she could suggest things to me.
And we we just played off each other. Mhm.
S2 (25:09):
Yeah. This is my favorite part. Yeah.
S6 (25:11):
Yeah. It was terrific fun. And so you know we
did a contrast sensitivity test for kids and the Mister
Happy test. There was a similar test. Um Leah Haven
and Heidi. Heidi. She called her test, but it was
basically a test that followed hours and tests for visual
fields and a couple of tests for visual acuity that
(25:33):
we put together for testing the vision of visually impaired kids.
And most a lot of those kids were multi-handicapped, too.
And so it was not just vision that you were
having to deal with, you're having to deal with a
whole lot of communication and participation issues that were tough
but fun to deal with, you know, um, it was
(25:53):
a great time.
S2 (25:55):
And there's also the Froot Loop or the cheerio, whichever.
S6 (25:58):
Yes. Yeah. That's right. Yeah. The the so called so-called
cheerio test. We put that together, and that came out
of just observing one patient who was just so anxious
to perform the task. She was standing on the foot.
Rest of the clinical chair had her hands behind her,
holding onto the armrest, but she was leaning forward at
an angle of about 45 degrees so she could get
(26:20):
closer to the chart or the targets that we were
showing her. And I said, oh, we need to incentivize
these kids to work hard and to get a reward.
And initially we said, why don't we use lifesavers or
something like that every time the kid gave a response
or to keep the kid interested in getting rewards? Why
(26:40):
don't we use lifesavers? But we soon realized that lifesavers
get one in your mouth and it lasts for ages.
We needed something that would dissolve very quickly, so we
used Cheerios and so we put the cheerio test together.
S2 (27:01):
And that's all the time we have for today. You've
been listening to Talking Vision. Talking vision is a Vision
Australia radio production. Thanks to all involved with putting the
show together every week. And remember, we love hearing from you.
So please get in touch any time on our email at.
(27:24):
That's all. One word at Vision Australia. But until next
week it's Sam Corley saying bye for now.
S1 (27:37):
You can contact Vision Australia by phoning us anytime during
business hours on one 384 746. That's one 384 74
six or by visiting Vision Australia that's Vision Australia.
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