Twelve months ago, Leonie Denhert had her hands full running her successful contract cleaning business. She lived in her own home, with her husband, and spent her spare time with her three beloved dogs. She played golf on the weekends.
Then, her elderly mother Lorna developed dementia, and at the same time, Lorna’s cancer progressed to a debilitating stage.
She requires full-time care, and Leonie has taken on the responsibility herself.
She was approved for government-funded in-home help, at a “high priority” level, almost two months ago. But the money hasn’t come. Instead, Leonie is sitting on a waiting list – waiting for somebody else to die so the funding can come to her.
“In June I rang up ACAT [the Aged Care Assessment Team] to say she needs more help,” she said.
“So they sent out a nurse and she did an assessment on her and said she needs Level Four High Priority, which gives us 60 hours a month of somebody coming over to help. That’s the highest you can get.
“When she got approved I said ‘oh, good.’ I went down to [local service provider] Valmar and said mum’s got a Level Four, and showed them the paperwork. They said, we’ve got people here on a Level Four that have been waiting for 12 months. One person’s on oxygen and they still can’t get it through. It’s all been approved, it’s just waiting for the government to release the funds, and they’re not doing it.”
Currently, Leonie receives 20 hours of in-home help a month. The rest of the time she cares for her mother around the clock. She’s moved into her mother’s home, where she has taken on the burden of showering her, toileting her, cleaning her up, carrying her in and out of bed, and calling the hospital when, despite Leonie’s best efforts, she falls.
Leonie will be turning sixty on her next birthday herself, and she is booking into see a chiropractor about a pain in her shoulders from months of lifting her mother every day.
Her husband has taken over the running of the family business, and Leonie has had to hire somebody else to take over the work she normally does herself.
She said that sometimes, all she wants to do is scream.
“I don’t want anyone to shop for me, I don’t want the washing done, I don’t want the housework done…I just want a break, and maybe for someone to give me a night away,” she said.
“I’m so tired.
“I’m entitled to two weeks respite a year, but the nursing home is full. I thought they would have respite beds, so I went in there to book in for October, and they said there’s no beds. If there’s no beds, there’s no beds.”
According to Valmar CEO Hugh Packard, who delivers aged care services in Tumut, Leonie’s situation is not unique.
She hasn’t slipped through the cracks, or been the victim of a bureaucratic stuff-up.
This is the way the in-home care packages have been intentionally designed.
The apparent cruelty in approving someone for care, and then refusing to fund it, is the result of the fact that approvals and funding are done by two different government departments: the Department of Health and the Department of Human Services.
Thousands of people around the country who, by the government’s own admission, require high-level in-home care are not receiving it because they are only funding a certain number of packages Australia-wide.
Those who miss out simply have to find a way to soldier on.
“Quite a few of the people we support should have higher packages, but we support them with what we can,” Mr Packard said.
“It’s something we’re aware of, but we’re not the gatekeepers or the holders of the dollars. I know of places where people need [the highest care level] Level Four packages and they’ve been waiting for years.
“My experience would show that there is a complete disconnect between the thinking at a bureaucratic level, and the experience of people who actually have to use these systems.”
According to Labor Member for Eden-Monaro, Mike Kelly, the public doesn’t know how many people Australia-wide are in Leonie’s position, because the government hasn’t released the figures.
“Unfortunately due to the Turnbull Government’s lack of action in allocating more packages, some consumers are waiting long periods of time to access their packages,” he said.
“This has led to a national queue or waitlist that has not yet been made public by the Turnbull Government despite Labor calling for it.
“I have had a number of complaints in relation to the My Aged Care delays, with some people ringing up my office in tears because of the stress of not knowing what is going on.
“I am disappointed that consumers are not able to tell how long their wait will be or where they are in the queue. For many residents this news is very distressing, as they are seeking greater financial assistance now.
“It is unacceptable that many Australians are being forced to wait many months after they have been approved for care to access the correct level of funding support.”
Leonie believes her mother is likely to pass away before they receive any funding, although she is still fighting to get some answers. She wants to speak up about her experience, in the hopes that others will be more prepared when they enter the labyrinth of government funding for aged care.
“This is what’s going on with the poor old elderly in this country,” she said.
“The people who are [writing this legislation] can afford to pay someone to look after their loved ones. We can’t. I’ve got nothing, except mum.
“But she looked after me for eighteen years, surely I can look after her for a couple of years.”
A Department of Health spokeswoman said the home care system aims to provide people with the level of care they require, as soon as possible, and those in need of higher levels of care are prioritised.
“If a person or their family is concerned, they should call My Aged Care on 1800 200 422 to discuss their individual situation,” she said.
“The Increasing Choice in Home Care reforms took effect from 27 February 2017. The reforms made changes in key areas: Funding for a home care package now follows the consumer; and there is a consistent national approach to assigning home care packages to consumers through My Aged Care which allows for a more equitable and flexible distribution of home care packages. Consumers seeking care are placed on a national prioritisation queue with their position based on their priority for home care services, and the time they have been waiting for care, regardless of where they live.
“These changes have not increased the wait time for a home care package. There has always been a demand for home care and consumers had to wait until a home care package was available. Wait times are transparent – this allows the Government to make decisions based on the facts.”