Most Australians say they want to stay at home in their later years rather than entering an aged care facility. But those looking for a dignified way to access help when it’s needed really don’t stand a chance. In the current environment, services provided by the Commonwealth are so hard to navigate and to access in a timely fashion that, sadly, you may very well die waiting.
And many do.
Damning findings from the first interim report of the Royal Commission into Aged Care Quality and Safety paint a sad picture of a system that is tangled up in inefficient processes, red tape and bureaucracy. It’s hard to understand how those at the top could have failed to notice the ongoing despair faced by so many families and their loved ones on a daily basis as they wait for the care services that never come.
I can personally attest to the trauma faced by many South Australians. Colleagues and friends regularly take time out of their working day to attend to aging parents who have been waiting months for a package of weekly assistance. They make meals, take their parents to the doctor, go home from work early to provide medication or assistance, help them when they are sick, and pop in to check on them in the mornings on the way to work. Others who work long hours, or have young children, often try to band together with other family members to pay for some private care themselves, often costing hundreds of dollars each week. The stress this causes for all involved is a sad sight to see.
We all want our loved ones to have the care they need in old age to be safe, happy, and connected to the community – preferably in their own homes. I would argue this is, in fact, a basic right. And, quite frankly, it’s cheaper for the taxpayer than a nursing home – or at least it should be.
Yet many are dying while they wait for extra help, or they have to enter an aged care facility well before they need to. In fact, the recent royal commission report noted as many as 16,000 people died last year while on the waiting list for a home care package. This is simply outrageous.
I worry that some of the problems in the lack of home care packages are not so much about funding availability, but rather about the design of how the services are rolled out.
This is how I believe it works at the moment. Federally-funded home care packages are offered to those needing a certain level of care and assistance, with a total parcel of money provided to the individual (through their selected care agency) for services, once the person has been assessed and accepted into the program. The services range in complexity and cost from (low level 1) $8,750 to (highest level 4) $50,750 per year. While these services cover domestic assistance, medication support, meal preparation and social support, the funding can also cover capital expenses like equipment, assistive technology, and home adaptations.
Navigating the MyAgedCare website is the first barrier. According to the royal commission report: “People are met with a telephone and internet-based national aged care entry system called My Aged Care that many people in their eighties and nineties find frightening, confronting and confusing.” It’s complex and time-consuming – even for relatives. So is waiting on the line to ask questions through the call centre and then booking an ACAT assessment for higher level care. You’ll be told there could be a wait for the ACAT team to come to do the assessment and then another wait for the funding package, often longer than 12 months depending on the demand in your geographic area. I know someone in my electorate who has been told the wait could be as long as two years.
As if all that research and time spent trying to talk to someone isn’t bad enough, it seems the long waits could also be due to the fact that some people with accepted packages are not actually using their full allocation of money which is holding things up for others.
In fact, Australia’s home care providers are currently holding on to around $7000 in unspent funds for each client. It’s not their fault, but rather the way the system works. The 2019 Aged Care Financing Authority Report found the amount of unspent funds is now at almost $600 million and this is just sitting in providers’ bank accounts around Australia.
Money for federally-funded home care packages is provided to selected care providers as a lump sum payment per client paid monthly in advance. While some clients use the entire package, others don’t access the full allocation of services, perhaps using it only for capital expenditure items like wheelchairs or walking frames. Unused money cannot be released to help others on the list because a total amount has already been allocated to one individual. This system creates a bottleneck with providers unable to use excess hours available for others needing help. People have to wait for another package allocation to become available from the pool of federal funding.
This situation shouldn’t be allowed to continue. We need to find a more efficient way to provide the services people need to be cared for at home – and these services need to be available quickly. When you’re elderly, waiting even a month can be a very long time.
ACAT staff should be resourced to conduct the assessments promptly and funding should follow. In addition, I think an individual looking for home care should be able to access a more personal assistance service to navigate the system. I know in the NDIS there are local area co-ordinators that are assigned to help navigate the system. I can’t say whether that is working perfectly at the moment, but it might be a concept worth considering in this space. At the moment it takes hours and hours trying to work out how the system works and then to arrange the services a person might need. Just being told to use the My Aged Care website or to ring a 1800 number is not good enough. It’s hard enough for most people to navigate this system by themselves – imagine if an elderly person is from a non-English speaking background?
We can’t ignore the findings of the royal commission and we can’t close our eyes to this issue. The system we have now is a sad example of what a failing aged care system looks. It’s inefficient, costly, impersonal and ultimately inhumane.
We need to all be listening to the elderly people caught in this system who speak out about their experiences and the providers who are trying to do the right thing but are telling us loud and clear that the system is broken. These issues shouldn’t be swept under the carpet just because we’re talking about older citizens who are not valued highly enough in our society. We should show more compassion. Where is our sense of community? Remember, age comes to most of us – and we’d all like to be treated with more consideration in our own twilight years.
Andrea Michaels is the Labor MP for Enfield and the managing director of NDA Law.