WOMEN AND THE AGED CARE SYSTEM - Debunking the myths, outlining the solutions, and highlighting the loads women carry.
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WOMEN AND THE
AGED CARE SYSTEM
Debunking the myths, outlining the solutions,
and highlighting the loads women carry.
MESSAGE FROM
WOMEN’S AGENDA
The responsibility of care for ageing relatives is reshaping
the lives of thousands of Australian women, heightened
by the fact that the demand for care is growing as our
population ages.
Now is the time for streamlined care services and options that lessen
the burden on women, while offering Australia’s older generations the
comfort of ageing happily, securely, and on their own terms.
Our research into perceptions of care and support for people as they
age in Australia, in partnership with Mable, shows that many Australian
women are feeling “sandwiched” between the often-impossible juggle
of providing adequate care and support for ageing relatives, their own
children and nurturing their careers.
This eBook was compiled to help women manage, or support their
relatives to manage, decisions around aged care, sharing links and
background to the best resources and support as well as breakdowns
on prospective care options. Our aim was to alleviate the already-
overwhelming mental load that too many women carry.
We hope you find this useful.
Thank you.
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MESSAGE
FROM MABLE
It’s frustrating and sometimes downright devastating, when you find
you can’t do the things you need or want to do and you’re going to
have to think about getting some help. If it is your parent, close family
member or friend, it doesn’t take much imagination to understand
how they might be feeling.
Unfortunately, the words, ‘aged care’, are a bit like kryptonite! With their associations
with vulnerability, dependency and diminished choice and control over our lives, they
can strike fear into the heart of the hardiest of souls.
It shouldn’t be like that, and it doesn’t have to be. Whether you have lived with
disability all or part of your life or you’re needing extra support in the short or long
term due to age-related changes or disease, your human rights do not change;
including your right to independence, to make your own choices and remain in control
of your life.
It was this powerlessness and lack of control that led to Mable’s establishment in
2014. It grew directly from the personal experience of co-founder and CEO, Peter
Scutt, whose parents were using the home care system in regional NSW.
“Staying at home is overwhelmingly what we want as we get older, even if we are
living with frailty and loss. But what was missing for my parents was the ability to
have any choice or control over who came into their private - and often intimately
private - world, when they came and what they did. I didn’t think wanting to know
who was coming and to have an easy, comfortable relationship with them was an
unreasonable ask,” he says.
Since 2017, Australians who are eligible for a Home Care Package have had the right
to take control and self-manage it – fully or partly – but it’s not well known and not well
promoted. Self-management isn’t for everyone but for many people, it can make a huge
difference to staying engaged with their community, getting more support and better
value from their Home Care Package and getting the quality of life that they choose.
We’re on a mission to improve access to affordable, flexible, quality support and care
for Australians everywhere. We know women often carry the load for understanding
and negotiating care in families and we need to support them too. But we know
that families often struggle with having these conversations. That’s why we are so
pleased to partner with Women’s Agenda to create this resource, to support those
conversations, so all of us can look forward to a future where we can have the
support we need, if and when we need it - on our terms.
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CONTENTS
5
What women think about care and support in Australia
7
What did respondents tell us?
8
Part one
The aged care system
11
Part two
How to start conversations with loved ones as they get older
14
Part three
How women are carrying the load of supporting
loved ones as they get older
17
Part four
Explainer: What to know about in-home aged care and support
20
Part five
Everything you need to know about self-managing
a home care package
23
Part six
How to connect with the right support when
self-managing your Home Care Package
26
About Women’s Agenda
26
About Mable
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WHAT WOMEN THINK
ABOUT CARE AND SUPPORT
IN AUSTRALIA
In June 2021, we surveyed 600 women on caring and ageing in Australia We wanted to under-
stand how much they knew about the options they had for their loved ones, and themselves.
And we wanted to get a sense of what kind of expectations and pressures they were feeling
to research and organise aged care for others. What we found was that women are managing
much of this load, often while also contending with other caring responsibilities, like caring for
kids and those with a disability.
Key findings How do those with kids, as well as
a parent or parents aged over 64,
feel about the system?
67%
OF WOMEN HAVE SPENT TIME RESEARCHING AGED CARE
OPTIONS, INCLUDING HOME CARE AND RESIDENTIAL
45%
FACILITIES, FOR OTHER FAMILY MEMBERS FEEL “SANDWICHED” BETWEEN MANAGING
CARE AND SUPPORT FOR OLDER PARENTS,
AS WELL AS FOR MY OWN KIDS
11%
FEEL POSITIVE ABOUT THE CARE OPTIONS
AVAILABLE FOR OLDER AUSTRALIANS, WITH
27%
SAY BALANCING MULTIPLE CARING RESPONSIBILITIES
14% FEELING ‘NEUTRAL’ AND MEANS THEY HAVE LITTLE TIME FOR MYSELF
76% EITHER DISAGREEING OR
STRONGLY DISAGREEING WITH THIS STATEMENT
9%
62% SAY THEIR PARENTS SUPPORT THEM IN
MANAGING KIDS (IN AN AD HOC WAY)
OF WOMEN SAY THEY HAVE HAD CONVERSATIONS
WITH LOVED ONES ABOUT THE AGED CARE
5%
OPTIONS THEY MAY NEED
SAY THEIR PARENTS SUPPORT THEM IN
12% MANAGING KIDS BY PROVIDING REGULAR CARE
FOR KIDS (AT LEAST ONE DAY A WEEK)
OF WOMEN AGREE OR STRONGLY AGREE THEY ARE “CON-
FIDENT THAT I WILL BE ABLE TO GET HIGH QUALITY AGED
4%
CARE AND SUPPORT IF I NEED IT”
SAY WITHOUT THEIR PARENTS, THEY WOULD
STRUGGLE TO PARTICIPATE IN PAID WORK
30%
SAY THEY FEEL HAPPY AND SUPPORTED
AT THIS POINT IN THEIR LIFE
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What the role have you had or expect to have in both managing aged
care options for family members (including care both in and out of home)?
0% 10% 20% 30% 40% 50%
I’ve had a conversations with my family 46.82%
about aged care options
I’ve had a conversations with my children 46.82%
about aged care options
I’ve felt responsible for managing aged care
options for my parents or family 39.63%
I’ve felt responsible for managing aged care
options for my partners parents or family 12.21%
I’ve expect to be managing aged care options
for my parents or family 30.27%
I’ve expect to be managing aged care options
for my partners parents or family 8.03%
I have previously helped a loved one access
the aged care options they need 41.3%
What are the things you value or expect to value the
most when finding aged care support?
0% 10% 20% 30% 40% 50% 60% 70%
Safety
Maintaining independence
Value for money
The quality of the support
Respect for me as an adult
Flexibility to meet my needs
Access to facilities a...
Access to specialised ...
The professional ...
Proximity to where I ...
Awareness of my ...
If you have parents over the age of 65 and children that still receive
financial support from you, which of the following apply to you?
0% 10% 20% 30% 40% 50%
I feel ‘sandwiched”...
Balancing both these caring ..
My parents support me ...
My parents support me ...
Without my parents ...
I feel happy and supported ...
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WHAT DID
RESPONDENTS
TELL US?
This research showed that women are often the ones
bearing the brunt of managing aged care research and
delivery for loved ones, and that support for them to do
so seamlessly isn’t sufficient.
39.63 percent of women said they felt responsible for managing aged
care options for their parents or other family members with more than a
quarter of respondents (27%) citing that the burden of balancing multiple
caring responsibilities meant they had little time to invest in themselves
or their own wellbeing.
While women are seeking to make the best care decisions on behalf of
their loved ones, they’re also desperate for streamlined services and solu-
tions to help them gain more time back in their own lives.
Women’s priorities around aged care were definitive. More than half of
respondents shared that their focus was on finding aged care that ena-
bled independent living, while 73 percent cited the quality of support be-
ing the primary drawcard. 35 percent also quoted that ‘flexibility to meet
my needs’ was a core priority.
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//// PART ONE ////
THE AGED CARE SYSTEM
We’re examining ageing, the aged care system and the options available
for ourselves and our loved ones, thanks to our partner Mable. In this first piece,
we debunk some myths associated with the aged care system.
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The aged care system is about ALL of us: Here’s what Myth: Nursing homes are the only option
we should know According to the Australian Bureau of Statistics, the
Ageing is a life stage, just like early parenthood, midlife majority of older Australians actually live at home, of-
and retirement. ten with some form of support or care, meaning just
5.2 per cent live in an aged care facility.
But so often discussions on this life stage are avoided
and put off. Instead of making plans around ageing and “For people who want to stay in their own home,
considering the highs and lows it will bring – as well as self-managing their home care package is an option. A
how we expect the aged care system to play a part – family member or other responsible person often helps
we’re reluctant to face ageing and even more hesitant with the arrangements. Everyone with an aged home
to talk about aged care. care package is under the supervision of a service pro-
vider. A small number of service providers support peo-
It’s time to smash through the stigma and break the si- ple to self-manage,” explains Dr Laragy, who conduct-
lence, because aged care is something we all need to ed COTA Australia’s ‘Self-management in Home Care’
think about – for our loved ones, for our community project.
and also for ourselves.
Through her extensive research, Dr Laragy has found
In Australia, the hours spent caring for adult family that the biggest barrier in the way of embracing home
members has doubled for women over the past year. care through most traditional service providers is the
We are all growing older, so let’s start having sensible thought of a stranger knocking at the front door. That
and timely conversations. needn’t be the case, she says: “A feature of self-man-
agement that many people like is being able to choose
Here, we bust some of the myths associated with the
their own workers. They often build a more personal
aged care system and shine a light on the opportuni- and long term relationship with the workers compared
ties available. to having agency provided staff, who can be strangers,
coming into their home to provide personal care.”
Myth: You only need to think about aged
care when you can’t cope at home Myth: All aged care providers are the same
A stitch in time really can save nine. Don’t wait until you Just like our internet plans, electricity providers and
have no other choices. Taking advantage of the sys- super funds, not all aged care package providers op-
tem sooner rather than later can reinforce us, prevent erate equally. Dr Laragy encourages everyone to know
or stave off problems and extend our health and well- and consider their options when it comes to choosing
being, helping us to continue to live safe, connected a package provider. For example what fees do they
lives. charge and do they give you the option of self-man-
aging?. “Many people like self-management because
“Lots of people hide or deny problems they might be
it enables them to retain their independence, enhance
facing at home because they see accepting care as de-
their quality of life and have control over their spend-
feat, when it should be the opposite: a way of taking
ing, but it does involve investing a bit of time initially
charge. Better to actively get an assessment than have
working out the system, understanding the rules and
a fall or critical incident and be told the only option is
deciding whether to use a financial service or to col-
a nursing home,” says Rachel Debeck, Chief Operating
late receipts themselves,” she says. “Some people [in
Officer at Mable. “We recommend people get assessed the evaluation] who were self-managing reported that
and enter the system as soon as they start thinking it was easier than working through a service provider
they may need some support.” once they learnt how to do it.”
For children and family members of ageing relatives, The benefits of self-management include more free-
it’s important to have sensible, helpful and authen- dom and control over your package and less admin
tic conversations about care options. “The aged care costs. The Royal Commission into Aged Care Quality
system is there to support people to live full lives. So, and Safety found that some service providers can take
older people should be asked ‘what do you want out up to half of a client’s funding in admin fees, compared
of life?’ and ‘how can we make this happen,” says Dr to some self-management where admin costs are only
Carmel Laragy, an aged care expert at the University of five per cent. In the Aged Care Royal Commission Final
Melbourne. Report, Commissioner Pagone stated “people receiving
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the highest level of care at home, on average, get only $9,000 annually while a level four package is over
eight hours and 45 minutes of services each week”. $52,000 a year and can be up to $55,000 if you qualify
This is from approximately $52,000 of annual funding. for any of the supplements.
With self-management, the savings on fees mean they “Understanding what’s available and how the system
might get up to 22 hours. That’s a lot more time to works is so critical,” says Dr Laragy. “It’s worth invest-
use on the services they require most, that might be ing a bit of time researching different options because
cleaning, cooking, transport, social activities or doc- service providers vary greatly and having the right sup-
tor’s appointments. “Moving to a self-managed home port can fundamentally change people’s life.”
care package can be life changing for people who’ve
only had enough support to be showered a few times a Myth: Getting old sucks
week and can now receive support for a shower every Unfortunately, stereotypes around ageing prevail. “The
single day as well as get out and about in their commu- dominant stereotype of older people as frail and vulner-
nity,” says Debeck. able is unfairly negative and not supported by facts,” ex-
plains Debeck. “Even for the many of us who will seek
Myth: I can get a home care package as
support from the aged care system, it doesn’t have to be
soon as I need it
about dependency and loss. It’s just as much about re-
Currently, the home care package system has a 160,000 taining our independence and continuing to live well, stay
cap on it. Following the Royal Commission into aged safe and connected and be able to follow our passions.”
care, which recommended completely uncapping the
system, the government announced an extra 80,000 We need to flip our attitudes to getting older and even
new home care packages to be released over the next to the aged care system if we want to get beyond sur-
two years. There is still a three-to-six-month waiting viving and continue thriving. Research has shown that
list for low-level packages and up to 18-months for a people who think positively about getting older live
high-level package. Remember how we said it’s best to more than seven years longer. So let’s toast to ageing,
apply for support sooner rather than later? positivity and longevity.
Often people start with a lower level of support – Mable is a website enabling older people who could
some Meals on Wheels delivered or someone to mow use a bit of assistance, as well as those supporting
the lawn. If they require more support they will need them to find and choose their own team of care and
a Home Care Package. A level one package is around support workers.
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//// PART TWO ////
HOW TO START CONVERSATIONS
WITH LOVED ONES AS
THEY GET OLDER
Great planning requires conversations and input from everyone involved.
And that couldn’t be truer when it comes to aged care options.
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Such conversations are not only critical to the individ- The following tips can help:
uals who’ll be supported by the aged care system, but
also for the entire family in getting on the same page Look for triggers
regarding how your older loved ones will be cared for, Sometimes it’s a medical emergency that sees children
should the need arise. shift to realising their parents might need help, but not
always. Often there are minor triggers along the way
But how do you start and frame these conversations?
that can indicate a parent or loved one is not as invinci-
We’ve asked a couple of experts to share their best ad- ble as we may have previously thought.
vice on talking to your ageing parents and loved ones
Look for these subtle changes – anything from a house
about considering proactive steps for managing the
not being as cleaned and maintained as it once was to
future.
weight loss, increased forgetfulness and anxiety.
The first such expert, lawyer Brian Herd, advises us all
These triggers don’t mean it’s time to “swoop in” and
to move conversations about aged care options to the sort things out. But rather they may open initial oppor-
top of our priority list, rather than waiting until the topic tunities to gently start some conversations about age-
is unavoidable. ing and the aged care system – if not yet with your par-
“The fact is we’re all living longer, so we have to plan ent, then possibly with another sibling or other family
for our futures and the futures of our parents,” says member.
Herd, the author of Avoiding the Ageing Parent Trap:
Essential Information & Solutions. Start early
Start these conversations early and move into them
“Having worked in elder law for over 20 years, I’ve seen
lightly with patience and care. This is not about hav-
the consequence of not having an aged-care plan and
ing “one conversation”. If there is no key emergen-
waiting until there’s a crisis to make decisions. Let cy or event, expect these interactions to go for weeks
me tell you, it’s much better to make educated and in- or months as each piece of the overall discussion is
formed decisions before it gets to crisis point.” processed.
So how do you actually start such conversations? Also beware that these conversations may take cour-
The key is ‘listening’, and using this to show empathy, age, as many of us typically still want to avoid anything
patience and respect for the parent or other loved one to do with the topic of ageing. As Brian Herd notes, you
you’re starting these conversations with. may need to find such courage to “suspend your con-
cern” about what you all might see as an unpleasant
topic, to start and continue these conversations.
Consider: what would I want?
A key first step for these conversations is to put your-
self in the place of the parent or loved one. Ask your-
self, how would you feel about people talking to you
about aged care?
We know from our own recent survey on aged care
that the idea of losing control and independence is a
key concern people have when thinking about this life
stage. So try and empathise with how the person you’re
speaking with might be processing the conversation,
as well as the fears they may have.
Ask your parent(s) how they are feeling about things,
what ideas and preferences they have, and what they
think of the different options you already know about
and have researched. Listen to what they say back to
you.
As Herd says, make sure your parent or loved one is not
sidelined in this discussion but is an active contributor.
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Getting older is a privilege – facilitate that and focus the discussion,” he explains.
and with the right planning and Reframe the conversation as positive
support, it can be a joy. Although big, these conversations needn’t be upsetting.
Dr Carmel Laragy, an aged care expert at the University
of Melbourne, says we should frame future planning as
something positive.
It may also help to talk about your own attitudes and
thoughts about ageing and the idea of losing independ- “Start by asking, ‘What do you want out of life?’ and
ence, to show that you’re empathising with the situa- ‘What will make your life great?’, and then ‘How can we
tion and to highlight that it’s a topic everyone needs to make that happen?’” she says. “Aged care planning is
consider, not one that’s only particular to them. about supporting people to continue to live full lives.”
Highlight the opportunities available in the different op-
Be prepared to really listen tions and what such options can provide. Getting older
Listening is essential and will make a difference in is a privilege – and with the right planning and support,
these conversations. Remember, you are not talking it can be a joy.
“at” your parent or loved one, rather you’re talking “with”
them. While you may have preconceived ideas about Do your research and offer research
what options they should consider or take, this is their support
life and you need to hear their ideas, concerns, desires In all life planning situations, we know being forewarned
and wishes. is forearmed. When families do their research to under-
Don’t threaten or become aggressive (even passively stand the aged care system, better outcomes can be
aggressive) and don’t be tempted to “take over” the de- achieved. For the majority of us, who would prefer to
cisions or to suggest the decision is ultimately yours. stay at home instead of moving to a care facility, there
are options to understand and consider. Home care
Reference news events or situations packages offered through different package providers
impacting those they know give people the opportunity to get at-home support and
even self-manage their funding to get help with clean-
News events, or ageing-related key life events impact-
ing, cooking, personal care, socialising, shopping and
ing people your parents or loved ones might know, may
necessary home improvements.
provide opportunities to gently start conversations
about ageing and aged care options. “People are much happier when they have the control
to manage their own life, and the right physical and
For example, what’s happening with cousin Helen, who
emotional support for their individual needs,” says Dr
had a fall and broke her hip, can be a good starting
Laragy. “It’s worth investing a bit of time initially work-
point for discussions and a natural opportunity for you
ing out the system and having these conversations
to offer to “get more information on options” and revert
about the different options.”
back at another time.
There is so much to consider and take in when it comes
Get on the same page as other siblings to the aged care system. So do the initial research in
Before having any formal conversations, Herd advises order to start these conversations, but be prepared to
siblings to meet and make sure they’re all on the same keep doing more research as you explore questions
page. “My biggest piece of advice is for families to put and options with your parent(s).
aside any issues, rivalries or jealousies, and come to-
gether as a team to get their parents the right finan- Talk to your own kids
cial, legal and lifestyle advice, and to organise enduring Once you’ve spoken to your parents about their plans,
power of attorney paperwork,” he says. it’s a smart idea to talk to your own kids about your
wishes. At 68, Herd has already spoken to his adult
Herd agrees it’s important to have brought up the sub-
children about his plans for later in life if he loses his
ject casually first before having a more formal discus-
independence.
sion and going through a planning agenda. If there is
any reluctance or avoidance, a professional might be “You’re never too young to start thinking about these
able to help. “The meeting has to be a combination of in- things – and filling out an enduring power of attorney
formation giving, two-way conversations and decision document,” he says. “Don’t wait until you’re laying in a
making, so a lawyer who specialises in elder law can hospital bed. Do it now.”
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//// PART THREE ////
HOW WOMEN ARE CARRYING THE
LOAD OF SUPPORTING LOVED
ONES AS THEY GET OLDER
Organising aged care options for loved ones can be a
process fraught with complexity and emotion.
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It’s often women who shoulder the responsibility of degrees – she had served as the ACT’s Health Minister
helping their parents, in-laws, or other older relatives – and thought her experience would make it easier.
navigate the plethora of options and make decisions.
“I’d even done a couple of inquiries into the aged care
According to a recent Women’s Agenda poll on aged sector for governments, and my knowledge of the sys-
care, 41% of the 600 women surveyed had previously tem was towards the top of the tree, but even I strug-
helped a loved one access the aged care options they gled,” she said. “The system is complex, and not simple
needed, while 40% said they had felt responsible for to navigate or understand.”
managing aged care options for one or more of their
“If it was like that for me, and I knew about the sys-
parents or family members.
tem, I wonder how many other women – and it’s usu-
As one respondent noted, “It wasn’t just the time in- ally women who get the job of doing this – get through
volved in supporting my father through the system, it it. And how people from different cultural backgrounds
was my constant self questioning and doubt: is this manage it.”
right for him? Am I doing the right thing? How can I talk
Carnell said it was a mistake to wait until her parents
to him about it?”
really needed an aged care package before starting to
Indeed, there is a lot of emotional labour involved in the look in to the different options available.
process of researching aged care options and helping
your family member figure out what is most suited to Because the decision was rushed, it meant that the
them and other members of your family. family settled for one in-home service provider without
really understanding how it would work. They quickly
Taking on board family members’ different perspec- discovered that their mother couldn’t cope with the dif-
tives, talking through all the options available, and then ferent people being sent to her home all the time.
actually working out how to progress can be a mine-
field. Many people are thrown into this process sudden- “Different people were turning up all the time to do the
ly when an older relative experiences a fall or other in- couple of hours of support that was a part of the pack-
cident and their health starts to decline, and it can be age and in the end, mum, who was in her 90s, said she
totally exhausting work. didn’t want anyone coming by at all,” Carnell said.
Someone who knows exactly what this process feels My Aged Care is famously difficult to navigate, and oth-
like is Kate Carnell, a recently appointed board mem- er online sources of information can be confusing to
ber at Mable, the website connecting older Australians the untrained eye, as it often comes down to one ser-
and those supporting them with in-home care services, vice provider marketing themselves over another.
and the former Australian Small Business and Family
Enterprise Ombudsman.
Carnell’s family had had some brief discussions about
what would be best for her parents in terms of care op-
tions, but ultimately struggled to get the balance right
when it became clear accessing extra support was
necessary.
The family had agreed that in-home support would
be the most suitable option, but Carnell told Women’s
Agenda that, in the end, they just didn’t get it right.
“I’ve seen personally how difficult and inflexible the sys-
tem really is,” Carnell said. “My parents were capable,
contributing members of the community and we didn’t
get it right because I didn’t know what options existed.”
Carnell said she was quite shocked to find out how dif-
ficult it was, when she suddenly needed to navigate the
world of My Aged Care, Home Care Packages and dif-
ferent service providers for her parents.
Throughout her career, both in business and politics,
she had been involved in the health system to varying
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Get started early “The people providing services on the Mable platform
are small businesses, that’s who they are. They’re peo-
If Carnell had her time over, she said she would make
ple running their own small businesses, or they’re sole
sure her family had the difficult, and at times emotion-
traders,” she said.
al, conversations about aged care options much earli-
er, before it reached a crisis point (we recently shared Carnell said the one-on-one consistency would have
some ideas on how to have these conversations here). helped her parents develop better quality relationships
with the people coming into their home.
Carnell adds that she would have also accessed in-
home services at a much earlier stage, so her parents “They’re people who have decided what they want to
could be eased into the process and having new peo- do is provide services to people who are getting older.
ple in their lives offering support could be normalised. That’s who you’re dealing with directly, and it provides
a relationship that matters to both players.”
“We would have had lots of better conversations about
it and not seen support as a bad thing,” she said. “It’s Ask for help
about being able to ease services in over time, so it’s
Sorting out aged care options for loved ones is a load
not seen as one day you’re independent and the next
that so many women take on, on top of the other loads
day you’ve got all these people in your face.”
they often carry including paid work, care for their own
children and other loved ones.
Familiarise yourself with what
services are available These loads shouldn’t be the responsibility of women
There are many different options available when it alone, yet so often they are.
comes to in-home support, and it’s important that every- Help from other family members – including a partner,
one involved is comfortable with what’s agreed on. siblings, children, and other relatives – should be a giv-
If the older person is concerned about retaining their en, rather than something a woman struggling under
personal agency and independence as much as possi- these loads should ever have to ask for.
ble, there are options to have greater choice and con- Unfortunately, the offer isn’t always made or automat-
trol over the support they receive. Opting to self-man- ically obvious. So, a key and necessary final point here
age, or partly self-manage a Home Care Package can is to remember it’s OK to ask for help. Ask for help from
be a good option for some people, leaving much of the siblings, from your own kids, from other relatives and
decision-making in their own hands. friends of the loved one who needs support. Seek out
Carnell said options like Mable, a platform that con- other friends who have been through this themselves.
nects people with in-home care providers directly, Talk, listen and share.
would have suited her parents better than having so Of course, it’s not always possible and might be easier
many different people visiting their home on a rostered said than done, but it’s important to remember that these
basis. are loads that should be shared when they can be shared.
16 • WOMEN AND THE AGED CARE SYSTEM | WOMEN’S AGENDA AND MABLE SPECIAL REPORT< back to contents >
//// PART FOUR ////
EXPLAINER: WHAT TO KNOW ABOUT
IN-HOME AGED CARE AND SUPPORT
If it’s become evident that an older relative in your life might benefit from some extra
support at home, exploring an in-home aged care package could be worthwhile.
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When it’s time to get down to the real options available about in-home care options.
for getting support at home, delving into this space can
“If you don’t get in early, by the time you really, really
feel like a minefield. Questions regarding the different
need the service and you can’t manage without it, you’ll
types of in-home services and packages available and
still have to wait,” Professor Low said.
knowing when and how to apply, can confound even
the most dedicated researcher. Moreover, this process Professor Low emphasises the importance of seeing
often exacerbates the stress many families are already in-home aged care, as taking proactive steps to stay in
experiencing. control and live safely in your own home, not as ‘giving
in’ to a loss of independence. She says it’s important to
Through this piece, we’ve endeavoured to untangle
reframe the picture so we view accessing help – with
some of the knots and empower you and your loved
house cleaning, meal preparation, gardening, washing
ones to take the next step in this journey with greater
and personal care, transportation, shopping, and even
confidence.
social support- as the individual taking action to make
Remember, accessing in-home support is a sure they can maintain their lifestyle at home for as
smart thing. long as possible.
As we’ve acknowledged previously, confronting the re- “The ‘reablement’ framework is meant to support the
ality that a parent, or older relative needs support to re- person to regain function or to do things themselves
main at home can be uncomfortable for many families. as much as possible and have control and say in how
Not surprisingly, most people hate the idea of losing those services are delivered,” Professor Low says.
their independence and some people have real con- Acting early and not waiting for an accident or crisis to
cerns about having strangers enter their home. For strike is important because it can prevent or at least de-
many people and their family members, there’s often lay possible health crises or accidents and avoid hospi-
uncertainty about what a home care package involves tal admissions – something we all should try to do. It
and whether it’s going to be the right fit. also means the individual gets the chance to ease into
Professor Lee-Fay Low, an expert in ageing and health having more support at home, which can take some
at the University of Sydney, told Women’s Agenda that adjustment.
as soon as an older person or their family notices they
are having trouble with basic tasks around the house,
There are lots of options, but first check in
or in the community, it’s the right time to start thinking with My Aged Care
There is no getting around it, to access government
subsidised in-home care and find out what’s available,
you need to get in touch with My Aged Care, the federal
government’s aged care portal.
The My Aged Care website (or phone 1800 200 422) is
your starting point. It’s where you get your assessment
– the vital first step – to find out what kind of care you
are eligible for, what services are available, and what
you might need to pay for these services. As Professor
Low advises, there can be lengthy wait times for Home
Care Packages, up to a year, so it’s best to get an as-
sessment as soon as possible.
There are two steps involved in getting assessed. The
first step is where you provide some basic information
to My Aged Care, either online or over the phone, about
why you are there and some of the things you’ve no-
ticed you need some help with. The second step is a
face-to-face assessment that happens in your home.
The type of support needed varies for different people.
For some, it might mean help to get to the shops or ap-
pointments, for others it could be more personal care
like having a shower and getting dressed for the day.
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Some people may need modifications to their home to Tips for managing in-home care
improve movement and access – like having a ramp When you are advised that you have been allocat-
installed or a bathroom redesigned- while other fami- ed your Home Care Package, you’ll get a unique code
lies might need respite care so a regular carer can take that you will give to the provider you have chosen, ena-
a break. bling them to receive and hold your funding. And you’re
Within a week or so of the face to face assessment, ready to go.
you receive a letter from My Aged Care telling you what According to Professor Low, you should meet your
level of support you have been approved for. If you are case manager or care coordinator before starting your
eligible for a Home Care Package, you will be told if it services, as often the person who does the first as-
is Level 1, 2, 3 or 4, each offering a different amount of sessment isn’t the person coordinating the care you’ll
funds. Unfortunately being ‘approved’ is not the same receive.
as actually receiving the funding and getting start-
“You want to make sure you meet the person that
ed with your support. This is where the waiting time
you’re going to be dealing with day-to-day, preferably
comes in.
with a home visit,” she says.
In the meantime, now that you know what level of sup- There are a few different ways you and your fami-
port you are eligible for, you can do your research, to ly can opt to manage your Home Care Package, and
get a good understanding of what you can and can’t it’s worth remembering that in Australia, all in-home
use your home care funding for, and you should start care is meant to be delivered in a way that gives a per-
looking at and comparing providers. This way, when son choice and control over their lives. The amount of
your package comes through, you’ll be ready to get choice and control you have is up to each person.
started right away.
For some people, having someone else make all the
What to look for in a service provider decisions is just fine. For others, who want to have
more control over the exact services they receive, who
Choosing a service provider can be daunting. There
comes to deliver them and when, ‘self-management’
are lots of options, and providers can deliver servic-
might be a better option. This way, you employ your
es differently, so it’s important to consider your unique own support workers and manage the schedule your-
needs. self. Professor Low says self-management is a good
The My Aged Care website allows you to search pro- option for some families, as long as they have good or-
viders by location, the services they offer and special ganisational and management skills.
criteria that might be important to you. For example, “It’s unusual for the older person to self-manage, it usu-
you need to consider if the provider’s location is close ally falls to the family,” she says.
enough, and whether they can provide the services you
“You need to be English literate, you need access to
need. Make sure the carers can speak your language or
technology, be organised, and have time to be able to
understand any special needs you might have. If you’re
do it. You also need some level of ability to be asser-
in a regional area, look into providers that know your
tive and know what you want and be able to negotiate
area and aren’t coming in from a big distance. If an old-
to get what you want. You have to be prepared to stand
er person has dementia, find out how much dementia
up for yourself, and advocate for what you’re after.”
expertise the provider offers.
You can also negotiate a combined approach where
It’s important to establish that the care provided is high you might self-manage some things and have other
quality and that the provider is meeting compliance things managed for you. Many people choose to man-
checks – you can do this by looking at the compliance age some things themselves to save on administration
section of their profile on the provider section of the My fees and get more support hours from their package. If
Aged Care website. you’re using a platform like Mable to connect with sup-
Costs are also important and can vary enormously. port people, the platform helps with administration and
Professor Low advises examining how much each pro- can simplify the process while you feel more in control.
vider charges in admin costs. How much you’re expect- “You’re essentially hiring your own care support staff
ed to contribute personally to a government subsidised and you will know exactly who’s coming into your house
package will vary based on the type of care you’re ap- and you have a say in that, and when they come,” adds
proved for, the provider you choose, and your personal Professor Low. “And a much bigger say in what they
financial circumstances. do, because you’re dealing directly with that person,
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//// PART FIVE ////
EVERYTHING YOU NEED TO
KNOW ABOUT SELF-MANAGING
A HOME CARE PACKAGE
If you’re currently exploring Home Care Packages in the aged care system, for yourself or
a loved one, a big upfront consideration is how you want to manage the package.
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Across this series of articles about navigating aged Your home care service provider manages the payment
care support at home, we have touched on the option system and will still be there to offer advice and answer
of ‘self-managing’ the Home Care Package. any questions you have throughout the course. It’s also
Self-management is different to the traditional provid- possible to negotiate a combined approach, where you
er management approach where the package provider self-manage some aspects of your package, and leave
negotiates the support services with you and then sup- other aspects up to your provider. This can be a good
plies the support workers, usually according to an avail- balance for people who are more time-poor.
able roster, while charging an administration fee.
Who can self-manage?
If you opt to self-manage your package, you play the Under the Aged Care Act, everyone has the right to de-
main role in deciding on the services you want, direct- cide whether to be involved in the management of their
ly employing the staff you choose, and managing their package, while providers are obligated to offer consist-
schedule according to your preferences. For people ent information to prepare older people for self-man-
who prefer to have a more hands-on approach, with agement, have a clear agreement around each party’s
greater flexibility and control over individual support responsibilities, as well as provide continued support
and care needs, and greater choice on aspects like the and involvement, if necessary.
level of involvement of support workers, and how your
home care funding is used, self-management can work Under the Act, Home Care Package recipients them-
better. selves, their carer or designated representative can
self-manage the Home Care Package. Some recipi-
When you self-manage, you’re putting yourself and
ents directly manage their own packages very well but
your family directly in the driver’s seat with greater au-
in many cases, it’s an older person’s family, or another
tonomy to live life as we choose and maintain wellbe-
loved one who will take on the responsibility of day to
ing at home, something most of us desire as we age.
day management.
Below is a breakdown of the ins and outs of self-man-
It’s important to remember that self-managing does
aged Home Care Packages and who might benefit
require a degree of technology literacy, as well as or-
from this approach.
ganisational skills. Professor Lee-Fay Low, an expert in
What is self-management all about? ageing and health at the University of Sydney, suggests
self-management is a good option for those who have
Self-management is based on the fundamental princi-
the skills and time.
ple that older people have been caring for themselves
and others their entire lives, and are best placed, along- “You need to be English literate, you need access to in-
side their family members, to understand their own ternet technology, be organised, and have time to be
support needs. Older people also bring a lifetime of
skills in decision-making situations, which are useful
when managing in-home care packages.
Self-managing your home care package means taking
an active role in organising the practical tasks associ-
ated with receiving in-home care through a service pro-
vider. Self-management will be different from person to
person, and often depends on the provider chosen. But
essentially, as long as the services you want are with-
in the guidelines, you can choose what you believe will
best meet your needs then find and hire the support
workers you want to provide the services, when they
will come to your home, and how much you will pay.
Choosing a package provider that offers genuine
self-management will allow you to make the most of
your own choices about how your money is used to
meet your needs in the best way possible.
It’s important to note that opting for self-management
doesn’t mean you’ll be left without necessary support.
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able to do it. You also need some level of ability to be Commission into Aged Care Quality and Safety found
assertive and know what you want and be able to ne- that some providers can take up to half of a consumer’s
gotiate to get what you want. You have to be prepared funding in admin fees. With self-management, there
to stand up for yourself, and advocate for what you’re are usually much lower associated administration fees
after,” she says. which means more of the Package funding can be in-
vested in actual support services and time.
What are the benefits of self-management?
“Moving to a self-managed home care package can be
The main benefit of self-managing a home care pack- life changing for people who’ve only had enough sup-
age is having the freedom and control to make choices port to be showered a few times a week and can now
and decisions about your own life and care and what receive support for a shower every single day as well
you believe is best for you – rather than what others as get out and about in their community,” says Rachel
might think is best for you. Debeck, Chief Operating Officer at Mable.
Individuals choose what services they need, the specif- Indeed, she says, self-managing and accessing sup-
ic support workers who come into their home, and at ports through a platform like Mable could potentially
what times that support is delivered. The freedom to see you receive double the hours of support, compared
make these choices and negotiate the terms directly, to a traditionally managed home care package.
means home care is often more consistent than is usu-
ally possible with the demands of a rostering system. If you want to explore self-management further, firstly
you need to make sure your Home Care Package pro-
Many people talk about the ‘dignity of choice’ that
vider will allow you to self-manage. While everyone has
comes with self-management. For example, purchas-
the right to self-manage their Package, Package provid-
ing and making payments can often be done directly,
ers don’t have to offer self management as an option.
without having to ask permission every time. The pack-
It’s important to ask the question when you choose
age provider may provide you with a debit card and/
your Package provider and remember there are some
or a debited bank account to enable payments. Or you
Home Care Package providers such as HomeMade
may be provided with a personal card and account so
that actually specialise in self management and offer
your provider can reimburse you after you’ve made a
lower administration fees, around 15% of the package.
purchase.
Do your research upfront and check out Mable’s ex-
Self-management also usually offers financial bene- cellent resources that breakdown everything else you
fits compared to traditional management. The Royal need to know.
22 • WOMEN AND THE AGED CARE SYSTEM | WOMEN’S AGENDA AND MABLE SPECIAL REPORT< back to contents >
//// PART SIX ////
HOW TO CONNECT WITH THE RIGHT
SUPPORT WHEN SELF-MANAGING
YOUR HOME CARE PACKAGE
If you’re thinking about the options for aged care support at home for yourself or a loved
one, ‘self-managing’ a Home Care Package is an excellent option chosen by many.
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If you’re now at the point where you have a Home Care chosen provider will help you to build out a Care Plan
Package sorted and have selected a provider that en- most suited to your individual needs.
ables self-management, you can shift your focus to
Establishing how much funding is available as part of
some of the more practical aspects, like identifying
the package is an important first step. Funding will dif-
which services you really need and want and finding
your support workers. fer from person to person depending on the level of the
package as well as other factors. What you have avail-
As we’ve previously highlighted in this series, when you able to spend can be finalised after fees have been paid
self-manage, you’re giving you and your family great- to the package provider. You can use the funding for
er freedom to choose how you want to maintain your
whatever services you or your loved one requires, but
wellbeing at home and get the most out of life, your
they do need to be within government guidelines and in
way.
line with your Care Plan.
In this article, we’ve provided a guide to the key
steps and factors involved in ensuring you or your loved From there, it’s about establishing what services are
one can get the most out of that self-managed Home your top priorities – the services you and your family
Care Package. really need and can’t do without; the things you’d like
to have if you can make it work; and the things that
How do I work out what are low priorities or only needed occasionally. After
services are right for me? your package assessment, it’s likely you’ll already have
It’s the role of every approved provider to make sure the an idea of what these service priorities are but it’s im-
recipient of a package is receiving the right type of ser- portant to have realistic expectations about what your
vices to help promote their wellbeing at home. When funding can cover, so clarity around your preferences
you opt to self-manage a Home Care Package, your and priorities is essential.
“It’s likely you’ll already have an idea of what these service priorities are but it’s
important to have realistic expectations about what your funding can cover, so
clarity around your preferences and priorities is essential”
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or sharing some interests – so it’s worth thinking about
those aspects up front as part of the process.
Deciding how many people you want in your support
team is also important. While you might need a couple
of people with specific skills (maybe a physiotherapist
or a nurse) to meet some of your needs you might find
a couple of other people who can do most of the other
things. Having just a few key support workers – rather
than five or six different people – coming at a time and
frequency that works for you, can simplify your support
schedule and keep things running smoothly day-to-day.
As a guide, someone might choose to have one or two
regular support workers who come to their home to do
the cleaning, help prepare a meal and provide trans-
port to the shops or medical appointments. Then, they
might have another support worker who does garden-
ing and home maintenance less regularly while engag-
This will vary depending on the individual. For example,
ing a nurse or allied health professional to support their
some people might prioritise grooming and person-
weekly health priorities.
al care, while others might be more interested in help
to maintain their home or garden or having a support Managing your chosen support workers
worker assist with day-to-errands like getting groceries
Once you’ve found support workers who understand
or going to the post office. Also consider how often you
your priorities, self-managing is all about establishing
or your loved one will need a support worker, and if any
and maintaining a schedule that suits you – but ide-
family members have capacity to do some things from
ally suits you both. When you engage a support work-
time to time. It’s all about getting the balance working
er, you’re hoping it will be the start of a long-term and
to meet your needs and preferences.
trusted relationship so being clear about expectations
Connecting with support workers on both sides and keeping good open communication
from the outset is the best foundation.
If you’ve chosen a Home Care Package provider that
offers genuine self-management, you’ll have the free- The process of finding the right support workers may
dom to find and hire your own support workers. These involve some trial and error, but unlike more traditional
are the people who will come to your home to help you services where you just get the support workers who
with the things (provide the services) that you’ve decid- are rostered on that day, using a platform like Mable,
ed are your priorities. you do have choice and control. You can trial any num-
ber of workers to make sure you get that right fit on
Having control over who your support workers are, is
skills, personality, and values. And once you find the
a significant benefit of self-management and is one of
right balance, it will be more than worth the effort.
the main reasons many older people opt for this course.
Finding the right support workers may feel like a daunt-
ing task, but a platform like Mable can streamline the
process. Through their website, you can search and
connect with independent support workers in your lo-
cal community and review their profiles. Mable arrang-
es insurances on behalf of the support workers who of-
fer their services through the platform.
Once you’ve made the online connection, you can or-
ganise to meet and discuss your individual needs and
establish details like rates and hours. Most of us have
our own ideas about who we want coming into our
homes and there might be special skills, characteristics
or values we’re looking for – like speaking a language
25 • WOMEN AND THE AGED CARE SYSTEM | WOMEN’S AGENDA AND MABLE SPECIAL REPORTYou can also read
