What industry is never punished if it advertises and is paid for services it can't provide? The aged care provider industry. This lack of scrutiny or penalty has become a crisis, made worse by the disorganisation in the Department of Health Disability and Aging, and as the toothless Aged Care Quality and Safety Commission.
According to state and territory public hospital data recently reported by the ABC, there are almost 3300 elderly Australians in hospitals unable to go home because care can't be arranged, nor are there nursing home beds.
Very few of those wish, or need, nursing home care. Until the aged care provider system is radically overhauled, this year's 35 per cent increase in patients unable to leave hospital is likely to continue to increase exponentially.
This is the tip of the iceberg. Hundreds of thousands of the elderly in need are not just waiting for the packages they have been assigned, but a possibly greater number can't take up those packages as there are no providers in their area. Exactly how many? It appears that this has carefully not been assessed.
Government statements are misleading. They imply that once a package is assigned, care will be available. This is rarely the case. There are not enough providers, nor do providers necessarily have the staff to give the care needed. Even when a provider is found, between 77-84 per cent of those who have managed to find providers state that the providers are unable to give the care they need.
Instead, the elderly are being increasingly advised not to be sucked into the whirlpool of the aged care system. "You'll spend months making calls that will get you nowhere", as one social worker told me last week.
There are three relatively easy, cost-effective solutions. But they depend on the government admitting that the present system doesn't work.
I've been on the aged-care fringes, not because of health problems relating to ageing, but because of a severe accidental injury at hospital a decade ago. NDIS refused to accept me: "You'll get far more care under aged care in a few years when you turn 65."
Theoretically, that is true - if the services existed. Despite 72 agencies listed last month on the government aged care website, My Aged Care, as offering care in the region where I live, only one actually does, and they not only don't take on new clients, but no longer even add clients to their waiting list.
And the other 71 providers? Four of those I called stated they had been mistakenly placed there by the department. Both Nambour and Brunswick councils were amused when I told them My Aged Care stated that they provided services in Braidwood or Araluen, NSW.
The others either stated they couldn't provide services, or were companies that from experience I know have no workers in this region, though they assure clients that they do, then vanish when those services are needed.
The department does not seem to check that providers have staff the area where they are listed, nor do they check that the services that are advertised are provided, not the quality of those services.
A few providers, including Catholic Care, do work in the Braidwood region. They are magnificent - and honest about already being overburdened and unable to take on new clients. The clients they took on years ago now need more care. Their workers are becoming burnt-out. Some probably deserve sainthood.
So far I have been assigned five aged care providers, with assurances each could provide help. One company only provided care in Queensland and Northern NSW. The second stated they were already overburdened, but would help in an emergency if they could.
The third requested that we find our own care, but pay 15 per cent of any wages to their company, and that our employees also pay 15 per cent of their wages. They exist purely so clients can obtain government subsidies by being listed with a provider.
Two companies assured us of all the help we needed. They even contacted us in frequent phone calls, possibly because I said we were unlikely to need help. When help was desperately needed, both were uncontactable despite weeks of daily calls and emails.
Both have since admitted after a formal complaint that they can't provide any help in this district, nor do they have the staff for the services they advertise. I have reported both of them. Neither has been penalised.
If those companies had promised they could build houses, but had no means to do so, they would have been prosecuted. Directors who promise a health food that is expensive water receive jail sentences. Provider companies are immune from prosecution, unless a client dies directly from spectacular lack of care and the coroner declares it manslaughter.
One dear friend, bedridden with advanced cancer, was abandoned when the company had no one to send, but did not inform her or her next of kin. Yes, Glynis was going to die: but not yet. I found her scared and hallucinating from thirst. She died in hospital soon after.
My husband, far older than me, is also eligible, has had no help whatsoever in the seven years since he was given "provider numbers" for his care, despite a time of desperate need when I had double pneumonia, three broken ribs, and was temporarily paraplegic and he'd just had major eye surgery. The only available respite bed for him was in Narooma, four hours drive away.
I couldn't drive him there. The transport provider I'd been allocated didn't answer the phone. Friends were all away as, as were others who help us. I had a few crackers and a single jug of water to last three days. My husband, unable to see, found milk and biscuits for himself. I called every carers' agency possible. All were sympathetic. All had no help to offer. The local hospital - usually brilliant - had no spare beds and was temporarily short staffed. Finally a friend returned just as I was able to hobble to the fridge.
The criminal aspect of aged care is that we had been persuaded there was no need to arrange alternate care because aged care has been promised. If I hadn't been weak with pneumonia I could have found the help we needed. I hadn't done so beforehand because I'd been assured help was there.
Late last year, I spent three days investigating exactly what service providers advertise but actually provide, phoning providers across Australia. In urban areas, 76 per cent of providers I phoned could not provide the supports they advertised. That rose to 93 per cent in regional areas. Most would not divulge fees until I signed up with them. I informed our local member and the minister of the survey response. There has been no acknowledgement.
The department of aged care must check that providers can and will provide the care before they advertise them on the My Aged Care website.
Aged care must take legal action against providers who advertise or charge for what they know they cannot provide.
Aged care must accept liability when providers they have recommended are guilty of deceptive advertising.
Most importantly, our government must admit just how little care is available. "Packages" may be funded, but are no use without staff.
Yes, there are many fabulous providers. But how do we know who are genuine, and who are frauds? How can we tell what care a nursing home gives?
My "break" moment came when I told a dementia care counsellor that a friend who was about to be sent to a nursing home declared he'd commit suicide.
"Yes," she said calmly. "That's often the best solution when there's no family to help."
Families often have little idea how their loved one is treated in a nursing home. On the surface, all is calm and clean.
It's calm because sedation is common, but often denied when families ask. Sedation means less mess and lower staffing levels. Withdrawal of water and food for an elderly patient with pneumonia or other potentially fatal condition is common, even in compassionate nursing homes.
Anna (not her real name) had visited her mother daily for nearly two years, despite her being semi-conscious. When her mother contracted pneumonia the doctor and nurses - all genuinely compassionate people, but desperately overworked - spent over two hours to convince Anna to withdraw all support - no antibiotics, and no water. Her mother would die of thirst while kept unconscious. It was best, they told her. Her mother was only 44 kilograms, bedridden with no quality of life.
Anna refused to kill her mother. She took her home. Within three days, off the sedatives, her mother sat at the family table eating dinner. Her weight increased quickly. The nursing home staff had not had the time to feed her. Her lethargy had been starvation, not just medication. She lived another year, conscious, active and happy.
Another friend was assured in one of Australia's most expensive nursing homes that her unconscious mother was not on constant morphia - until the bill arrived. Her mother's teeth - intact on admission - rotted and were all removed. She had never had her teeth brushed. My friend, too, was offered the "kind death" by thirst. She too refused. Her mother sang carols at the family Christmas.
We saw neglect on television during COVID-19, patients with weeping ulcers, peeling skin and malnutrition. For most of us it was our single glance into nursing home conditions. COVID staff shortages made them worse, but only on a foundation of everyday neglect.
On the surface many nursing homes look lovely - until you find grandma's nappy hasn't been changed for 48 hours; that under her hair is a weeping cancerous ulcer, or that she has eaten nothing for days because she can't manage to eat what is on the tray, or is nauseated by the common practice of pureeing the sausages, beans, potatoes and gravy given the other patients, now cold and congealing grease.
Families usually have no option but to stay with substandard care. In NSW, 98 per cent of nursing home beds are occupied. It is almost impossible to find one in an emergency.
These are not isolated incidents. This is the state of too much aged "care" in Australia - many fabulous, even saint-like providers, and, I need to emphasise, also brilliant nursing homes that provide the very best of care, and smile as they do so, like our local local Multipurpose Health Centre and the nursing home that cared for my mother in her final months. There is no way to express my gratitude to them, or to compassionate agencies like Catholic Care.
But we also have far too many substandard conditions, disguised by fine china, polished furniture, and a grand piano no one ever plays, only obvious with thorough investigation of medication records or patients' teeth, and a government that doesn't care.
I have written several times to our local member, detailing problems and my investigation. The first email got me two calls a day for three weeks from the department, who finally gave me another provider who promised transport but had no workers within hundreds of kilometres of our post code, and who left us desperate and stranded.
The MP and their staff have not replied again. What can they say? That they know, but cannot admit how large the problem is?
And that is the real challenge. We do not have enough feet on the ground, or hands to help, especially as most of our aged care workers were recent immigrants, many now denied entry. As aged care workers burn out, or age themselves, there are even fewer. But there is a solution.
Give the states the money for local hospitals to provide the services they used to give: community nursing that provided everything from wound dressings to respite in the home, and who also trained the next generation of carers.
Local hospitals are already set up to provide that care. They just need staff - and money. Money that would actually provide care. But to do that would mean admitting the provider system has not just failed, but cost the taxpayer billions of dollars in illegally gained profit.
The My Aged Care website states, "If you are older and experiencing homelessness or are at risk of becoming homeless, there are aged care services to support you."
Sadly it doesn't say you'll wait 15.1 months for any help if you're lucky, and 10 years if you are not. A decade at 70, living in a car, surviving on the generosity of volunteers?
My husband and I are OK. Our only traumatic times have come when we believed that help would come via a licensed provider, such as when my husband was promised "Hospital in the Home" the day after an 11-hour abdominal surgery. Luckily, I've learned to change dressings, drainage tubes and insert cannulas, despite not being qualified to do so.
I have seen too much tragedy swept under the carpet. I see a government who will not prosecute broken laws, because doing so might reveal the magnitude of the tragedy that is our "aged care" system.
It is time to admit the system's failure and to prosecute offenders to the full extent of the law. It is time to truly care.
