Navigating Aged Care - a primer
Are you prepared for navigating aged care? If we are blessed with a long life, then ageing, aged care, dementia and end-of life care will impact all of us. For something so unavoidable – for loved ones as well as for ourselves – I’ve realised how common it is to be woefully unprepared.
I’ve had first-hand experience in the past couple of years of organising a range of aged care services. I stepped in to help with an ACAT assessment, in-home care and ultimately an aged care place for a friend without family to help him. In hindsight, I feel blessed that my Mum’s moves from her apartment to a retirement village and then needing some in-home care were not as complex as many people experience but reflect now on how they both happened rapidly and relied on a lot of intense, collaborative family research, support and facilitation.
With both of my loved ones, I learned what many people know; that navigating the aged care system can be complex, frustrating and emotionally charged, especially when there’s a desire to achieve positive outcomes quickly during a crisis.
I also know that these personal experiences were a breeze compared with others. I worry about what happens when people don’t have family members to help. Or when family members disagree on the care options, especially when the person involved is no longer able to effectively communicate their wishes.
A recent conversation with Second 50 member, Liz Foster, who works with a non-profit residential aged care provider, made me think that I need to get even more informed.
So, please find below my ‘Primer to Navigating Aged Care’ – including some great tips from Liz.
I won’t promise that it’s comprehensive or contains everything that you’ll need to know in your hour of need. However, I hope it’s a good start.
If you haven’t yet found yourself in the aged care maze, even a glance through this might help you be even slightly aware of some of the services and acronyms (soooo many acronyms!).
If you are closer to needing aged care information, or are currently in the thick of it, you might find some extra resources. And, as always with Second 50, please let me know any helpful resources you know of that I’ve missed!
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Understanding My Aged Care
The Australian Government portal to all things aged care is: My Aged Care.
Whether you have loved ones over 65 or you are in that age group yourself, it’s worth understanding what’s available and how to navigate the My Aged Care portal. (The minimum age is lower for Aboriginal and Torres Strait Islander people, who can access My Aged Care from 50).
There are three main forms of government support for aged care in Australia:
Commonwealth Home Support Programme (CHSP). This is an entry-level package for people who need small amounts of personal care or domestic help. It covers things like meal preparation, showering assistance, home modifications and garden maintenance but only when these things are needed in amounts of around a couple of hours per week.
Home Care Packages (HCP). These are an amped-up version of support designed for when a person’s needs are higher, but they want to stay living at home. There are four levels of packages, ranging from low-level (not greatly more than a CHSP) through to high needs, though it’s worth flagging that even the highest level is a long way short of full-time care. Extra funding is available for people with dementia and the system is similar to the NDIS in that each person can choose which care is most valuable to them. People can manage their own Home Care Package or assign it to a Home Care Provider.
Residential Aged Care. Though research from 2020 showed that up to 80 percent of older people have a strong preference to keep living in their own home, sometimes moving to residential aged care is needed. Moving to an aged care home (which used to be called nursing homes) can be a permanent move, or on a short-term basis (something known as Respite Care) or as a transition similar to rehabilitation after an injury or illness (known as Transitional Aged Care Packages, or TACP).
Note: Liz suggested that respite care is a fabulous way to ‘try before you buy’. It’s a way to both give the caregiver a break and for the person needing care to test out an aged care facility in more detail than just doing a tour. She also notes that some aged care providers offer a continuum of care, meaning that you can, for example, start with their home care services then make use of report and/or residential nursing care if and when this is needed.
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An ACAT assessment is the way into all aged care
To be eligible for any aged care services, you first need to be assessed by ACAT, which stands for the Aged Care Assessment Team. ACAT assessments are partly used to determine who can access government subsidised aged care services.
These assessments also determine what sort of help is needed, how urgent the need is and, if possible, how best to support an older person staying at home. The aim is not to ‘test’ you, but to understand your situation so you can receive assistance that suits your needs.
Personally, my experience of my Mum’s ACAT assessment was relatively quick and easy. Because we had an urgent situation, I called the number and the people I spoke to provided helpful advice to speed up the process. It helped to have a letter from her GP as well. However, like all government systems, there can be long delays.
So, even if someone is healthy, it’s never too early to start this process (from age 65). Otherwise, without this planning ahead, it’s possible that you or your loved ones might not be able to access the most appropriate services when you need them, especially if something changes quickly.
Applications for an ACAT assessment are made through the government portal, My Aged Care.
My Aged Care: myagedcare.gov.au | 1800 200 422
How much does it cost? It's important to know that many of these ACAT aged care services are means tested, so it's worth understanding the rules around that before you start. It will depend on a person's financial means as to whether it is better to make private arrangements. This article has lots of helpful information about all the services, including an overview of the financial aspect of aged care services (which my brother and I found incredibly complex, frustrating and time-demanding to access): Aged care in Australia can be tricky to navigate. This guide has got you covered - ABC News
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Advocacy and support for those navigating aged care
The Older Person’s Advocacy Network (OPAN) is an Australia-wide service that offers free and confidential advice and support to anyone struggling with navigating aged care. It’s a charity-structured organisation who have useful information online as well as a team of advocates available by phone.
OPAN: opan.org.au | 1800 700 600 (Mon-Fri 8am-8pm and Sat 10am-4pm).
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Advance Care Planning helps loved ones and health providers know what matters most
Advance care planning enables you to understand, have discussions and make some decisions now about the health care you would (or would not) like to receive if you (or a loved one) becomes seriously ill and is unable to communicate preferences or make treatment decisions. This is a good opportunity to open the conversation and to think about and discuss preferences. Ideally your preferences would be documented in a plan, which is known as an advance care directive - but at this point, I have found it very useful just to start and structure conversations with loved ones. Advance Care Planning Australia has a wealth of helpful information and tools to help you start a conversation, understand life-prolonging treatments and options as well as links to advance care directive forms.
Advance Care Planning Australia: https://www.advancecareplanning.org.au
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Volunteering as a way of getting an insight into aged care
Volunteering in aged care can be a way of offering meaningful value to others as well as increase your knowledge and insight.
The Aged Care Volunteer Visitors Scheme (ACVVS) is run by the Federal Department of Health & Aged Care. It’s is a service that matches interested volunteers with older people who either live at home or in residential aged care. Matches are made based on shared interests as well as geography. Options include regular contact for a chat, walk or shared activity.
ACVVS: About the ACVVS program
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Issue-specific support
There are many other services relevant to aged care, including those offering illness or issue-specific advocacy and support. Here’s just a handful to give you the idea (and we note that most of these are not only relevant to those in later life):
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Liz Foster’s tips for anyone who is aged over 70 and living independently
Thanks to Liz for putting this helpful 'next steps' checklist together for members:
Apply for an ACAT assessment. Do this regardless of whether you or your loved one currently have significant needs as this gets you in the system and minimises later delays (which can be considerable).
Talk about where you / they might like to live if care needs change. Consider what your / their current living situation is like, what’s most important to you / them, and what extra supports from family or services might support staying at home or living with a relative? Visit some local aged care homes to get a feel for them before a move is pressing, allowing time for rumination and reflection.
Make sure you / they have a will and that it’s updated to reflect current circumstances and wishes.
Complete an advance care planning form, or at least start to consider and discuss what’s important in terms of medical decision making.
Stay in touch with government and local aged care providers’ news updates so you’re fully informed about what’s on offer if a nursing home is required.
Ask questions as they arise and don’t shy away from conversations about ageing and care. If you’re hesitant to raise these topics with family and friends, Second 50 is a great network to get support from!
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Speaking of dementia and end-of-life issues…
While aged care is a separate topic to dementia and end of life issues, there are obvious connections.
When we first started Second 50, I never imagined that dementia and death would be hot topics for our members. However, after meeting Second 50 women working in aged care, dementia care and end-of-life care, as well as hearing so many stories from people navigating this stage, I now believe these are topics every Second 50 woman would gain value from understanding, sharing knowledge and getting comfortable talking about and planning for.
So I’d like to take my head out of the sand and stop fearing the process of ageing and dying. Instead, I’d like to embrace it with knowledge and intentionality. I feel certain this is a key step in helping me live a better life, and a way of helping us and our loved ones have a better death.
Stay tuned for future primers on these topics and I welcome any input, collaboration and advice from Second 50 members with expertise and experience to share.
Second 50 Note: Members, please contribute to the member discussion on this topic here