Reforming home care and making it sustainable into the future – a six-point plan

The Federal Government has announced reforms to the administration of home care, with a new Support at Home Program to commence in July 2023.

This follows recommendation 118 of the Royal Commission into Aged Care Quality and Safety, which advised the creation of “a new funding model that takes the form of an individualised budget or case-mix classification”.

The three existing care streams – Commonwealth Home Support Program, Home Care Packages Program and Short Term Restorative Care Program – will be integrated.

According to the federal health department, each older person will be provided an individualised support plan and the ability to self-manage the plan’s finances – the benefits of which have been demonstrated by recent research by Dr Sarah Russell.

However, what is currently unclear is how the Government aims to remedy severe workforce shortages and other logistic barriers to the delivery of quality of care.

Danijela Hlis – writer, aged care support worker/advocate and sitting member of the Council of Elders – has identified six priority areas the Government and home care providers must address in order to truly reform the sector and make it sustainable into the future.

1. Eliminate waiting lists

Hlis tells Aged Care News that, first and foremost, work must be done to eliminate the infamous waiting times associated with entering the home care system, which can leave an older person waiting for care for up to 12 months.

“Often people are offered level 1 or 2 because there is a long waitlist for level 3 and 4.

“I know of friends who had to enter a residential care facility prematurely because they could not stay alone at home waiting.”

And for those who do finally receive care, workforce issues are often resulting in inconsistent care.

“Service providers do not have enough relief staff, so many times they call on the day of the service to say no one can come; or they send someone not trained to work with a person with high care needs, who may be paralysed, or has dementia, for example.”

2. Workforce capacity

With demand far outweighing supply of home care workers, Hlis suggests that it is hard to imagine how quality of care can be ensured, no matter how well reformed administration of the system becomes, nor how much extra funding is channelled into extra packages.

“I believe that we as a society are largely responsible for this shortage of workers, because we don’t treat them well,” Hlis says.

“We don’t respect them. We don’t admire them. We don’t train them well. We don’t pay them well. We expect too much from them.

“They often don’t have monthly meetings with their employer and feel disrespected and not valued…  the only time that the two will probably talk is when there is a huge problem.”

3. Exorbitant administration fees and double-charging

In her experience working with clients receiving home care, Hlis has noted that “mistakes are constantly happening and clients are overcharged”.

“A family carer is often stressed having to double check everything.”

Providing respite support to an older client last December, Hlis says despite her services being subsided by Carer Gateway/Wellways, the service provider duplicated the fee and took it out of the client’s package funds.

“Luckily we picked up the error and got the money refunded.

“In another instance, the client was in respite at a residential care facility (also subsidised by Wellways) but again was charged for services at home, by mistake.

“How many of these mistakes are not picked up by our frail and vulnerable seniors?

“This is just a rain drop in a sea of problems.”

Furthermore, Hlis notes that administration fees are often exorbitant and disproportionate to the cost of services rendered.

“A client paid $244, in fees when the actual domestic assistance that month was only $204,” Hlis recounts.

“How the Government can allow this to happen I fail to understand.”

4. Choice, control and care co-design should be afforded to elders

There is no point offering services if consumers are too scared to use them.

Hlis notes that greater awareness needs to be generated, emphasising that the acceptance of home care is not the beginning of an inevitable pathway into residential aged care.

“I had a neighbour whom I helped get up from a small fall in his garden, across the street from where I live.

“Eventually I got to know him a bit better and he was so old and so frail, but I discovered that he was actually looking after his wife who was even more frail, bedridden and permanently on oxygen.

“He just begged me,  ‘look, there is nothing wrong with me; it was just a little slip. Don’t call the ambulance because they will take us both into a nursing home’.

“The couple both happened to pass away not long after, and the children, living interstate,  were actually shocked, because their parents did not disclose how frail and sick they really were.

“The reason why people say that to their adult children, it’s because they want to stay at home.

“Dignity of risk needs to be understood by families.

“Total safety in a residential care facility may not be what the seniors wish for; they may prefer some risk, in order to be able to stay at home.

“So what I and many others are trying to say is that we have to balance dignity and risk and really communicate with our elders and seniors as to what they think is preferable: to stay at home where they want to be and have some risk involved or to leave their home, their independence, their memories, their everything for that safety, and full care [in residential aged care].

“It’s a big discussion, but I feel we must raise awareness of the human right to age how one wants and where one wants.”

For clients with cognitive capacity, a system of “co-design” would empower older persons to have a say in how their care is delivered and to develop trust that their personal preferences are being respected.

“I believe that the client’s home care plan must be designed with consultation between the client, family carer and the service provider’s case manager. This has not been happening in the past.

“Many people are still under the impression that the service provider will tell them what work can be done, what time etc – so we need more education to raise awareness of our human rights to co-design our home care.”

5. Need to encourage CALD-friendly care

There are added barriers and vulnerabilities for elders from culturally and linguistically diverse (CALD) backgrounds that must be accommodated, notes Hlis.

“The problem with us from culturally and linguistically diverse backgrounds is that, number one, we are extremely independent, and fearful of accepting giveaways, especially those that are not available in the country of our birth,” Hlis says.

And for the CALD elders who decide to welcome home care workers into their home, culturally insensitive care can quickly erode their trust in the system.

“[Workers] don’t speak any words of the person’s language and don’t know how to access culturally appropriate apps and tools – which are there, but if they don’t access them, then they’re useless.

“Then these people will, sooner or later, say ‘oh no, this is not working, I better just do it myself.

 “I’ve come across that again and again and again.”

And whilst implementation of bi-lingual workers would be the gold standard, Hlis notes that workers who only speak English can still provide culturally sensitive care with some small gestures and appropriate training.

“You will make your work so much nicer and easier if you just learn a few words from that person’s language,” Hlis advises.

She has observed, after working alongside an aged care worker who tried to cheer up a depressed, tearful resident with some words from her mother tongue.

“She learned how to say ‘oh, you look so beautiful today’ and, BANG, the tears were gone, her cheerfulness returned…

“How little training – how little funding – does that require? So little time and effort and money is required if you really want to help somebody have a better day.”

But when it comes to higher care needs, Hlis indicates that translation services need to be instated as a formal requirement in instances where an elder cannot communicate with their health team in English.  

“When we come to more professional things such as diagnosing and managing somebody’s pain, that’s where I’ve been pushing assertively for legislation about interpreters, because we can no longer play with people’s lives by assuming we know where they’re hurting, what’s wrong with them, or what medication to give them.”

“In the past two years I have witnessed a client placed into dementia care incorrectly; another transferred from hospital to permanent residential care ; another requiring me to engage a professional advocate because we feared elder abuse; and another one misdiagnosed with dementia, until a week later delirium was correctly diagnosed.

“In all these cases, no interpreter was called.”

6. Policies and funding to ease carers’ burden

There are only 168 hours in the seven-day week but, astoundingly, Hlis notes that many unpaid carers, most commonly the children and/or the partner of the elder, are responsible for their loved one’s care for up to 150 hours a week.

“I believe that as family and friends and community, we should, of course, all be helping each other … It’s just that I don’t believe that somebody in their prime should sacrifice their life, their career, their marriage, their whatever, because they need to give 150 hours or more per week to their loved one so as to keep him or her at home.”

Hlis’ insights come from personal experience, having cared for her mother [who had dementia] for a number of years.

“We survive, but our mental and physical health suffers enormously, no matter how much love we put into caring.

“Very often, you don’t get any support workers coming on public holidays or weekends because you can’t afford them [because of the penalty rates].

“You know that they cost too much and you would deplete your package funds very quickly.

“So all the showering, toileting, everything on public holidays, and Sundays and so on. You’re all alone for everything and that’s a lot to ask.”

And for the carers of CALD elders, Hlis notes there is a stronger impetus for carers to take on an unsustainable burden of care.

“We must look after our parents, it is part of our culture… Our parents often don’t have good English, so placing them in residential care is like giving them a death sentence.

“Nobody understands them; they can’t communicate; it’s too difficult.

“So while we love keeping them at home and enabling them to have a good experience ageing, carers need help.”

While the Victorian Government recently announced an additional $10 million dollars in respite funding to give carers more frequent breaks, the rest of the country is yet to follow suit.

“There is so much innovation needed if we were to really improve the situation… And so far, I’m afraid I’m not seeing it happening.”

To find out more about Danijela Hlis and her advocacy work, read this Aged Care News story detailing her 2022 priorities as a member of the Council of Elders.

The Federal Government is continuing community consultations on this issue and more into 2022.

Hlis encourages everyone with an interest in aged care reform –  senior Australians, their families and carers and members of the aged care workforce – to participate with more information available via this link.