Christine Radke is tired, and on hard days that fatigue turns to desperation while her elderly father lingers on a waiting list, hoping more help will come.
She cares for her 95-year-old dad, Herbert, around the clock at her home in Ipswich, south-west of Brisbane.
Herbert has dementia and physical ailments, which means Ms Radke needs to assist him with every part of daily life from getting out of bed to going to the toilet.
“There isn’t a lot that Dad can do for himself, unfortunately,” Ms Radke told 7.30.
“He had a head bleed, which caused a stroke, which caused the very sudden onset of a type of dementia.
“There’s difficulty with his physical motor abilities, with continence, with memory.”
Ms Radke is trying to keep her father out of residential aged care, but managing each day is a challenge.
She said her father felt guilty about how much help he needed because he lived independently until recently.
“He’s a very positive person but sometimes he feels that he’s a burden,” Ms Radke said.
“He’ll say, ‘I’m just a problem. I’m just a trouble, you’d be better off without me.'”
They receive some help through a limited, federally funded home care package worth about $16,000 a year, which for Herbert means a support worker showers him three times a week.
But in June, Herbert was assessed as needing the highest home care package available, known as Level 4, which would provide another $36,000 in funding.
The Radkes don’t know how long they’ll have to wait before more Federal Government funding is made available to them – only to expect it will be at least another six to nine months.
“A lot of days I feel desperate. I have a torn rotator cuff in my shoulder and it brings its own lot of challenges, and I’m tired,” Ms Radke said.
There are almost 100,000 elderly Australians who, like Herbert, are waiting for funding to access their approved level of home care package.
Waiting lists a ‘critical failure’
The lengthy queue was described as “cruel and discriminatory” in the scathing Aged Care Royal Commission interim report, which found many people would die waiting or be forced into residential aged care.
John McCallum, the CEO of consumer group National Seniors, gave evidence before the royal commission, where he called home care waiting lists “a running sore” and a “critical failure”.
Professor McCallum said the situation being faced by Herbert and Christine Radke was unacceptable.
“That’s the problem we have looking at us in the face – we have somebody who really needs that care and who, inevitably, if it doesn’t come, will either suffer, suffer at home in a way that he needs to be put into residential care, where that’s not his preference nor his family’s preference,” Mr McCallum said.
“You’re driving from something that would cost less (home care), driving a person towards that residential care – and that makes no sense at all.”
Government funding ‘starting’ to make an impact
The Morrison government is funding tens of thousands of extra packages, but it is not enough to clear the waiting list.
Minister for Aged Care Services Richard Colbeck said the government funding was starting to make a difference.
“There continues to be an increase in demand from senior Australians who want to stay at home,” Mr Colbeck said.
“We have for the first time over the last 18 months seen that waiting list come down and that is due to the additional investment.
“We’ll put an additional 40,000 packages into the home care system this financial year alone.”
But counsel assisting the royal commission has made recommendations to go much further, calling for the Morrison government to clear the entire home care package waiting list by the end of this year and then ensure new home care recipients don’t wait more than one month before receiving funding.
Mr Colbeck said the Federal Government would wait for the royal commission’s final report due in late February.
“We will obviously seriously consider all the recommendations of the royal commission, and we will make an initial response and a formal response and a much more major response in the budget,” Mr Colbeck said.
John McCallum from National Seniors backs the recommendations by counsel assisting and said his group wouldn’t accept the status quo.
“We would strongly support that, that’s going to take quite a bit of money, it may not be achieved but if we’re heading that direction, and it’s planned and believable, I think that’s very important to do,” Mr McCallum said.
“Older Australians are very articulate, they have lobby groups that are articulate, and there’ll be a penalty if this isn’t done, in terms of people speaking their minds.”
Home care system ‘broken in so many ways’
According to the Health Department’s latest figures, more than half of the seniors waiting for home care need the highest levels of care.
Herbert is one of more than 14,000 high-needs people who are waiting for Level 4 care but the Morrison government is only funding 4,500 extra packages at that level.
How long they’ll wait is unclear because the Health Department only says the wait will be more than 12 months.
But the Productivity Commission recently found the average wait time was 28 months.
Stephen Duckett, from the think tank the Grattan Institute, says the entire home care system should be overhauled.
“The problem with home care [is] it’s broken in so many ways,” Dr Duckett told 7.30.
“It’s broken in the sense that we don’t have enough places. It’s broken in the very design.
“There are just not enough packages, and secondly, they’re not are not the right sort of packages.”
Dr Duckett is the author of a recent report that proposes a dramatic shift to providing universal access to care based on need.
It won’t be cheap, at an additional cost of $7 billion a year.
“We need to start off by saying that older people have rights, just like I have a right to medical care, just like there’s no cap on the number of times I can visit a doctor or a specialist,” Dr Duckett said.
“First of all, you have a right, and then you have access to the care, and you also have a broker that helps you manage this.”
He also warns the current approach allows providers to charge excessive administration and management fees and must change.
“The providers will say, we’re going to charge 30 per cent to manage your package, and that’s a common fee, and so even if you don’t use all of your package, you have to pay this standard amount,” Mr Duckett said.
“The second thing is sometimes the fee per hour is very, very, very high, and so people can be exploited by ruthless providers and not have the care that they need, and they’re paying way too much because there’s no-one to help them in negotiating all of this.”
More reform is needed
Mr Colbeck agreed the home care system needed to keep changing.
“We need to continue to grow the capacity of the system, we’ve never shied away from that … and we need to reform the way that the home care package is delivered,” Mr Colbeck said.
“We’ve started that process – the first piece of legislation to commence the process of reforming the delivery of home care packages passed the Parliament just before Christmas.
“There’s another tranche that will come in during the Autumn session and we await the recommendations of the royal commission’s final report.”
‘We have to do it better’
Ms Radke is trying to cherish the time she has left with her father, but looking after him is challenging.
At night, he calls out for pain relief, but he often forgets when she has already provided it.
“I sleep close to Dad and because of the neuropathic pain in his foot. He’s been experiencing a lot of pain during the night and he forgets that he’s already asked me for pain relief,” Ms Radke said.
“So, I can get woken a few times a night and asked for pain relief.”
She said she was speaking out because she believed her father and others deserved a better quality of life.
“We have to do it better,” Ms Radke said.
“I take risks all the time, and the risks are part of the stress.
“If I have to go to the chemist to pick up something, I have to leave Dad alone.
“I’m very aware that if he was in a care situation, they would not consider him safe to be left alone – he isn’t safe to be left alone.
“If we had the Level 4 funding there, I would be able to have people here.”