3 days ago
What I've learned about navigating the aged care system second time around
When I first suspected my mother had dementia early this year, selfishly my first thought was "Oh no, not again. I can't deal with the system again so soon".
I'd just managed to secure a home care package for my father, two and a half years after he'd had a laryngectomy for advanced throat cancer which left him without a voice and a debilitating existence.
He narrowly escaped residential aged care, despite facing pressure to go down that route from many within the system and spending many months in several different homes on respite.
It was a merry-go-round of facilities across Sydney and in the end, none of them would take him permanently, deeming his tracheostomy too high risk.
So, I thought I knew the system pretty well.
I also thought the grief and stress associated with my father's illness and decline, combined with a career and two small children, was enough.
I don't have any siblings to help and my parents are divorced, so they don't even have each other.
But that angst of watching a parent lose their capacity for a 'normal' life was happening again.
And on top of that was the administrative burden of dealing with My Aged Care, Centrelink, doctors and social workers.
It turned out I also had more to learn this time around and I'm bracing myself for an even steeper learning curve once the new Aged Care Act comes into effect later this year.
After almost four years navigating various aspects of aged care, here's what I've figured out:
This time last year my mother was on the dancefloor at her own birthday party. Now she can only walk using a frame for short distances.
The decline has been rapid.
We started with the GP, then referrals to a geriatrician and specialists and a bunch of brain scans.
Despite receiving a dementia diagnosis, I thought a stint of rehab before heading home with support would be enough.
It wasn't.
That's when I engaged My Aged Care to get an Aged Care Assessment, which basically gets you into the system for help and support.
Kyra-Bae Snell, the executive director of aged care consultancy group CareAbout, said this step was critical.
"An assessment is everything," she said.
It's important for the family to not downplay what care was needed, she said, because that would mean longer wait time and fewer services.
The assessment will basically point you in up to three directions, depending on what level of support is needed.
You'll be given a bunch of codes, which you need to keep on file because those codes unlock all the services you've been approved for including help at home, respite or permanent residential care.
Some of this may change when the new Aged Care Act is expected to roll out from November 1.
The Commonwealth Home Support Program (CHSP) is generally for people with low needs who just require basic help at home such as cleaning or gardening.
But, as I experienced, it's also for people who are waiting on a home care package and need much more support for things like showering, dressing, preparing food or taking medications.
It can be tricky to organise because you may need to get each service you've been approved for from a different provider and set up a weekly roster and payment system, since it does require a co-contribution from the participant.
I also found it wasn't enough to cover what we needed, so as Ms Snell said, "Be the squeaky wheel".
Home Care Packages (soon to be called Support at Home) are a little more straightforward and are simply designed to keep people at home for as long as possible.
Under the current system, the wait time is at least nine months, but from November, under the new Act, it's meant to be three months.
That's because the reforms mean more packages will be available, as the government makes cost cuts in other areas.
I personally found it easier using one provider (which I found via trial and error from a list on the My Aged Care website) to cover all of this for my father.
But Ms Snell said self-management was also a good option.
"You'll have a lot more control over how the money is spent and it will be more cost effective under Support at Home than it ever was," she explained.
That's important, because the new system will require participants, even full pensioners, to pay more for everyday living or independence supports with co-contributions from 5 per cent up to 50 per cent, depending on their income and assets.
On the flip side, clinical care, such as nursing, will be free.
Ms Snell encouraged people to continue those non-clinical services like personal care and showering, despite the costs, as they were essential to staying at home.
"We see when a personal care worker comes into the home and reports like a bruise or a skin integrity issue, then that's then raised with the care manager and then you can bring in a nurse or then you can arrange to go and see your GP," she said.
Residential Aged Care is, in theory, the last resort — for me anyway.
I spent months of stress and tears lining up both private and CHSP-funded carers for my mum after a long stint in rehab and hospital.
But after a week at home with multiple falls, I realised the time had come for 24-hour care.
Luckily, I already knew a lot of the homes in Sydney after my father's experience, so I made a list of ones in areas that suited my mother and arranged visits.
Homes may over-complicate explaining the costs, but I found it useful to think of it as though you're paying for a home with additional daily costs.
Jim Moraitis, the founder of VillageLocal, an organisation focused on helping older Australians navigate the aged care system, agreed while it was not like a real estate purchase, it was important to treat the process like one.
"There should be due diligence of that purchase … and what I mean by that is everything is negotiable," he said.
In my experience, many homes said there was no availability. But I pushed for tours and found once physically there, we were placed on their wait list and vacancies suddenly materialised.
Mr Moraitis said this was a typical sales tactic — to create the illusion of scarcity.
"So you were originally told no, there's no availability. Then you'll get a call out of the blue in a few weeks saying, 'Hey, one's just popped up, take it now or lose it'."
He said that could take away the perception that you were able to negotiate.
I've experienced help from the least expected areas, including a customer service operator with My Aged Care who went above and beyond, as well as little help from those who were meant to assist, such as social workers.
I've learned to take the help where I can, always be gracious and take matters into my own hands.
Hospitals will try to push you out with the first available (even if undesirable) option. Resist that pressure and always make sure you're comfortable with the next step.
If you're a carer and you have the time and energy, ask My Aged Care for additional carer's respite for your loved one. Or use the service Carer's Gateway which can unlock funds and additional support for you.
Don't underestimate the power of financial knowledge. You might be lucky enough to afford a specialised aged care financial advisor or utilise the free services offered by Services Australia.
And finally, accept whatever assistance friends and family are offering — lifts to appointments, clothes washing, food delivery, babysitting — it all adds up.
The system is meant to become easier to navigate from November 1, particularly for older Australians. Let's hope that's the case.
I'm one of thousands of Australians stuck between unwell or aging parents and young children.
Each day one or both of my parents need something — from dealing with a false personal alarm activation, filling out yet another form for Centrelink, organising flu shots or doing another tour of a home.
It really is never ending and these tasks interrupt the work day and the time I have with my kids.
I've been told to delegate tasks or simply look after myself, but that's easier said than done when, like me, you're the only one who is around and has authority to make decisions.
What I have learned overall though, is that I really need to make the most of the time I have with my parents, even though it's now mostly taken up with boring administrative tasks.
What I want to do now is ensure my young children have a memorable relationship with them and get to know a little bit about these unique people who brought me into the world.
