These deaths show how fatal and fast the spread of the infection can be, and the extreme challenge of containing the virus once a positive case appears in aged care homes.
But there is also community pressure to ease social distancing rules for aged care residents and, for facilities that banned visits, to start allowing family members and friends to see their loved ones again.
To address these concerns, on Friday the aged care sector and consumer advocacy organisations released a draft visitor access code. The code aims to meet the needs of residents to see their families and friends while minimising any risk of spreading COVID-19.
But putting the code into practice will require more staff time to implement them. And while additional funding is on its way, existing workforce shortages may mean a delay to boosting the front-line workforce.
Rights and responsibilities of residents and visitors
According to the code, visitors should be provided with regular updates and information about what’s happening in the facility.
They should also have the option to talk to their loved one via video conference or telephone calls to supplement in-person visits.
But they can’t visit while they have cold or flu symptoms. They must also have had their flu vaccination, wash their hands, remain in the resident’s room or designated area, and to call ahead before visiting. They may also have their temperature taken on arrival.
Each facility will create its own guidelines about where residents can have guests visit – whether it’s in a dedicated room, the resident’s room, a visiting window or something else.
Most visits should be brief. But residents in their final weeks of life and those with an established pattern of care from a family member or friend, for example to help them eat, should be allowed longer and/or more frequent visits.
The code states residents can continue to use public spaces in the facility, including outdoor spaces. But if there is an outbreak, they will need to be confined to their rooms.
Rights and responsibilities of providers
Facilities have the right to refuse entry to someone for a justifiable reason, and to move to lockdown if there is an outbreak.
They have a responsibility to ensure all staff have their flu shots, to facilitate video conferencing or phone calls with family and friends, and enable in-person visits.
These changes require more staff
All of these changes require additional staff to facilitate better communication, video conferencing and increased visits during the pandemic.
Use of new technologies requires a significant amount of staff time. Many residents would need help holding the phone or dialling the number, or using Zoom or Facetime and maintaining a video conversation online. For some residents, such technologies may be a whole new world of experience.
Taking bookings for visit times and screening visitors for temperature, flu vaccination status and hand sanitising takes considerable staff time. As does escorting visitors to the room and back out of the facility while ensuring they’re keeping physical distance throughout.
Staff increases will take time to implement
Residential aged care has long experienced workforce problems, including high staff turnover, failure to attract staff with sufficient qualification and training, and leadership issues, to name a few.
A timely and effective response to the COVID-19 outbreak is likely to be hampered by the sector’s existing challenges.
Hopefully the code will be more broadly and consistently practised by all aged care providers.
Public consultations about the code are underway and close 3pm Thursday May 7. If you are a family member or friend of someone living in aged care, or you’re an aged care provider or staff member, you can raise concerns or views about the code here. The code is due to be finalised on May 11.
Physically, older people are among those most vulnerable to the coronavirus.
For those isolated in residential aged care or in the community, they’re also arguably the most vulnerable socially.
Reports from European and American care homes, where large clusters of residents have been infected, provide sobering reminders of the need to take precautions.
But some of these precautions – particularly banning visitors – raise ethical questions.
None offer simple answers. In an industry that’s already under-resourced and under-staffed, aged care providers are facing the challenge of balancing residents’ health and well-being, workplace health and safety and public health risk.
Visitors must be aged over 16, submit to health screening, stay for only a short time and remain at least 1.5 metres apart. One visit per resident per day is allowed, of up to two people. But visitors are urged to stay away if they don’t absolutely need to be there.
Further restrictions apply in Tasmania – only visitors providing end-of-life support or essential health care are permitted.
But both not-for-profit and for-profit aged care providers are increasingly opting to go further than government advice and banning visitors altogether.
Many of these providers publicly state they will allow visits to their residents at the end of life while others have not communicated their policies on this.
A workplace for some is a home for others
From the perspective of nurses and other clinicians, aged care facilities are workplaces and preventing infections is the priority.
Earlier in the pandemic’s trajectory, Chief Medical Officer Brendan Murphy said “you cannot completely deny access to an elderly person in a residential facility to their closest next of kin”.
A blanket ban on visitors certainly raises ethical concerns. There is a very real risk residents’ social and emotional needs will be overlooked.
For instance, in cases where one spouse lives in residential care and the other doesn’t, is it ethical to expect couples to go without seeing each other for up to six months?
Family as caregivers
While visits from family members can bring joy to people in aged care, often their role is more than this.
Many residents rely on daily care provided by spouses and/or adult children. This is especially true for those with dementia, those who need assistance with eating and those with mobility issues who require extra assistance with toileting.
The chair of the aged care royal commission recently indicated if family visits are to be banned, facilities must put measures in place to deal with the negative consequences.
This may mean deploying extra personnel to attend to residents’ supplementary care needs, and providing creative technological solutions to enable residents to stay in touch with their families and communities.
Some families have expressed concern that COVID-19 lockdowns may increase the risk of neglect and/or abuse in residential aged care.
In their absence, who will provide independent oversight of residents’ well-being? In cases of neglect or abuse, who will advocate for residents? What measures can be put in place to protect residents?
While the royal commission has been overshadowed lately, we must not forget it remains ongoing.
Involving residents and families
The most ethical approach is for providers to involve residents and their families in decision-making. The aged care quality standards – which enshrine consumer dignity and choice – don’t become redundant just because we’re in a pandemic.
It’s important for providers to ascertain what matters to residents. For many, their priority is likely to be quality of life, not length of life.
During COVID-19, we need to find creative solutions that meet residents’ needs, without putting others at risk.
Some families have pulled their relatives out of aged care in desperation. But have residents been offered the option to move out and live with family in a well-planned way?
If facilities are able to re-organise internal spaces, especially where independent living units and residential care are co-located, have residents and family members been offered the option of living together on site, away from other residents?
There are no simple answers, but these may be examples of workable compromises.
We took a close look at breaches of aged care standards from 2019 to see what effect the new aged care standards are having, and where aged care providers are falling short.
In the interactive map below you can see aged care providers that were non-compliant in 2019.
What are aged care standards?
Aged care standards are the minimum standard of care the government expects nursing homes to provide.
They are supposed to ensure people in aged care have access to quality care including competent staff who listen, best-practice clinical care and nutritious and tasty food.
Nursing homes that don’t meet standards are given a notice of non-compliance. If the provider doesn’t fix the problems that made it non-compliant, then it will be sanctioned.
If assessors decide there is an immediate and severe risk to residents, nursing homes can also be immediately sanctioned. The nursing home provider must then bring the care up to standard before they can take new residents.
The new standards, introduced in July 2019, focus on “personal dignity and choice”.
They were designed to support the provision of care based on what residents want, rather than penalising providers when they let residents do something that could be considered “risky”, such as allowing someone with mild dementia to walk to the shops, or having a pet in the nursing home.
The number of non-compliance notices and sanctions in the first six months of the new standards decreased. This is likely because assessors visited fewer nursing homes in this period, and may still be learning how to interpret the new standards.
Aged care providers and industry bodies have criticised the new standards for being subjective and vague. They do not measure objective resident outcomes like depression or number of infections.
For-profit companies had a higher rate of non-compliance in 2019
Some 6% of for-profit residential care facilities failed aged care standards in 2019, some of them multiple times. In comparison 5% of not-for-profit and 4% of government facilities failed standards.
The rate of non-compliance in for-profit facilities was 27% higher than not-for-profits, and 54% higher than government facilities.
This suggests for-profit providers in Australia are more likely to provide lower quality care. An international review has noted similar trends in other countries.
Profit margins are slim in aged care, and for-profit providers are under pressure to make profits by cutting costs. This could lead to a lower standard of care compared with not-for-profit or government providers.
The most common reasons for non-compliance in 2019 were in the area of personal and clinical care and the area of governance.
An example of a nursing home breaching the personal and clinical care standard could be if the home’s practices mean it isn’t giving medication correctly, isn’t managing wounds properly, or isn’t providing dignified help for residents using the toilet.
Homes might also breach the personal and clinical care standards if they don’t have sufficiently skilled staff such as registered nurses to care for residents with complex health needs.
A nursing home might be non-compliant in governance when it doesn’t have the right systems in place to monitor and improve its clinical care, for example in the areas of infection control or restraints. It might also be non-compliant if residents and families don’t have enough of a say in how the facility is run.
The new standards were supposed to place an increased focus on dignity and choice, supporting the identity of a person, and increasing their say in the care they receive. This means catering for residents who want to have showers in the evening, stay up late, or make their own lunch. Previously there was much less emphasis on these aspects of aged care.
It is somewhat promising that more breaches of non-compliance in the “dignity and choice” standard have been picked up since the new standards came in. But given we know care is often poor in this area and there is an increased focus on this standard, we could have expected a more significant change.
Based on the first six months of non-compliance and sanctions data for the new aged care standards, we cannot be confident the new standards are ensuring nursing homes provide higher quality care. We await more data.
Until then, aged care residents and their families should monitor the quality of care they receive, know their aged care rights, and complain if they think there is an issue.
When so much of a resident’s waking hours is spent either at a meal, or thinking of a meal, the meal can either make or break an elderly person’s day.
So why are some aged care providers still offering residents meals they can’t stomach?
It comes down to three key factors: cost-cutting, aged care funding structures that don’t reward good food and mealtime experiences, and residents not being given a voice. And it has a devastating impact on nutrition.
Our research from 2017 found the average food spend in Australian aged care homes was A$6.08 per resident per day. This is the raw food cost for meals and drinks over breakfast, morning tea, lunch, afternoon tea, dinner and supper.
This A$6.08 is almost one-third of the average for older coupled adults living in the community (A$17.25), and less than the average in Australian prisons (A$8.25 per prisoner per day).
Over the time of the study, food spend reduced by A$0.31 per resident per day.
Meanwhile the expenditure on commercial nutrition supplements increased by A$0.50 per resident per day.
Commercial nutrition supplements may be in the form of a powder or liquid to offer additional nutrients. But they can never replace the value of a good meal and mealtime experience.
dementia (because of difficulty swallowing and sensory sensitivities)
a poorly designed dining environment (such as poor acoustics, uncomfortable furniture, inappropriate crockery and table settings)
having too few staff members to help residents eat and drink and/or poor staff training
not supplying modified cutlery and crockery for those who need extra help
not offering residents food they want to eat or offering inadequate food choices.
My soon-to-be-published research shows disatisfaction with the food service significantly influences how much and what residents eat, and therefore contributes to the risk of malnutrition.
Malnutrition impacts all aspects of care and quality of life. It directly contributes to muscle wasting, reduced strength, heart and lung problems, pressure ulcers, delayed wound healing, increased falls risk and poor response to medications, to name a few.
Food supplements, funding and quality control
Reduced food budgets increase the risk of malnutrition but it’s not the only aged care funding issue related to mealtimes.
Aged care providers are increasingly giving oral nutrition supplements to residents with unplanned weight loss. This is a substandard solution that neglects fundamental aspects of malnutrition and quality of life. For instance, if a resident has lost weight as a result of ill-fitting dentures, offering a supplement will not identify and address the initial cause. And it ends up costing more than improving the quality of food and the residents’ mealtime experience.
Our other soon-to-be-published research shows the benefits of replacing supplements with staff training and offering high-quality food in the right mealtime environment. This approach significantly reduced malnutrition (44% over three months), saved money and improved the overall quality of life of residents.
However, aged care funding does not reward quality in food, nutrition and mealtime experience. If a provider does well in these areas, they don’t attract more government funding.
It’s not surprising that organisations under financial pressure naturally focus on aspects that attract funding and often in turn, reduce investment in food.
A research team commissioned by the health department has been investigating how best to change aged care funding. So hopefully we’ll see changes in the future.
Aged care residents are unlikely to voice their opinions – they either won’t or can’t speak out. Unhappy residents often fear retribution about complaining – often choosing to accept current care despite feeling unhappy with it.
We lived in an aged care home. This is what we learned
New Aged Care Quality Standards came into effect on July 1 (I was involved in developing the guidelines to help aged care providers meet these standards).
However, they provide limited guidance for organisations to interpret and make meaningful change when it comes to food, nutrition and mealtime experience. Aged care providers will need extra support to make this happen.
We’ve developed an evidence-based solution, designed with the aged care industry, to address key areas currently holding aged care back. The solution offers tools and identified key areas essential for a happier and more nourishing mealtime.
At the end of 2018, our team lived as residents in an aged care home on and off for three months. As a result of this, and earlier work, we developed three key solutions as part of the Lantern Project:
a food, nutrition and mealtime experience guide for industry with a feedback mechanism for facilities to improve their performance
free monthly meetings for aged care providers and staff to discuss areas affecting food provision
an app that gives staff, residents and providers the chance to share their food experiences. This can be everything from residents rating a meal to staff talking about the dining room or menu. For residents, in particular, this allows them to freely share their experience.
We have built, refined and researched these aspects over the past seven years and are ready to roll them out nationally to help all homes improve aged care food, nutrition and mealtime experience.
This year’s budget includes $448.5 to modernise Australia’s Medicare system, by encouraging people with diabetes to sign up to a GP clinic for their care. The clinic will receive a lump sum payment to care for the person over time, rather than a fee each time they see their GP.
The indexation freeze on all GP services on the Medicare Benefits Schedule (MBS) will lift from July 1, 2019, at a cost of $187.2 million. The freeze will be lifted on various X-ray and ultrasound MBS rebates from July 1, 2020.
The budget announces $461 million for youth mental health, including 30 new headspace centres, some of which will be in regional areas. But it does little to address the underlying structural reforms that make it difficult for Australians to access quality and timely mental health care.
In aged care, the government will fund 10,000 home care packages, which have been previously announced, at a cost of $282 million over five years, and will allocate $84 million for carer respite. But long wait times for home care packages remain.
Other announcements include:
$62.2 million over five years to train new rural GPs
$309 million for diagnostic imaging services, including 23 new MRI licences
$331 million over five years for new pharmaceuticals, including high-cost cancer treatments
$107.8 million over seven years for hospitals and facilities including Redland Hospital, Bowen Hospital, Bass Coast Health and Ronald McDonald House
$70.8 million over seven years for regional cancer diagnosis, treatment and therapy centres
$114.5 million from 2020-21 to trial eight mental health facilities for adults
$43.9 million for mental health services for expectant and new parents
$35.7 million over five years for increased dementia and veterans’ home care supplements
$320 million this year as a one-off increase to the basic subsidy for residential aged-care recipients.
Here’s what our health policy experts thought of tonight’s budget announcements.
A hesitant step forward for Medicare
Stephen Duckett, Director, Health Program, Grattan Institute
Medicare funding is slowly creeping into the 21st century. The 19th-century model of individual fees for individual services – suitable for an era when medicine was essentially dealing with episodic conditions – is being supplemented with a new fee to better manage the care of people with diabetes.
The precise details of the new fee – including the annual amount and any descriptors – have not yet been released. But it should encourage practices to move towards a more prevention-oriented approach to chronic disease management, including using practice nurses to call patients to check up on their condition, and using remote monitoring technology.
The budget announcement contained no evaluation strategy for the initiative. The government should produce such a strategy soon.
Support for aged and disability care
Hal Swerissen, Emeritus Professor, La Trobe University, and Fellow, Health Program, Grattan Institute
The budget has short-term measures to address major issues in aged care and disability while we wait for the royal commissions to fix the long-term problems.
The National Disability Insurance Agency (NDIA) is struggling with the huge task of putting the National Disability Insurance Scheme (NDIS) in place.
There has been a major under-spend on the on the scheme. Price caps for services such as therapy and personal care are too low and nearly one-third of services are operating at a loss. The under-spend would have been more if there hadn’t been a last-minute budget decision to significantly increase service caps, at a cost of $850 million.
$528 million dollars has also been announced for a royal commission to look at violence, neglect and abuse of people with disabilities – the most expensive royal commission to date.
There is more funding for aged care. Currently, 130,000 older people are waiting for home care packages – often for a year or more. Nearly half of residential care services are losing money and there are major concerns about quality of care.
The short-term fix is to give residential care $320 million to try to prevent services going under. The budget includes 10,000 previously announced home care packages, at a cost of $282 million, but that still leaves more than 100,000 people waiting.
Little for prevention, Indigenous health and to address disparities
Lesley Russell, Adjunct Associate Professor, Menzies Centre for Health Policy, University of Sydney
Preventable diseases and conditions are a key factor in health inequalities and rising health-care costs. The two issues looming large are obesity and its consequences, and the health impacts of climate change.
There is $5.5 million for 2018-19 and 2019-20 for mental health services in areas affected by natural disasters, and $1.1 million over two years for the Health Star rating system – otherwise nothing for primary prevention.
The Treasurer did not mention Closing the Gap in his budget speech, and there is little in the budget for Indigenous health.
Just $5 million over four years is provided in the budget for suicide-prevention initiatives. And the Lowitja Institute receives $10 million for health and medical research.
$6.3 million to continue the development of the Health Data Portal for services funded under the Indigenous Australians Health Program.
Inequalities and disparities
Disadvantaged rural and remote communities will (ultimately) benefit from efforts to boost National Rural Generalist Training Pathway, with $62.2 million provided over four years. This was a 2016 election commitment.
Peter Sivey, Associate Professor, School of Economics, Finance and Marketing, RMIT University
There are no major changes to public hospital funding arrangements in this year’s budget.
Funding for public hospitals is predicted to increase at between 3.7% and 5.6% over the forward estimates. However, these figures are contingent on the new COAG agreement on health funding between the Commonwealth and states, which is due to be finalised before the end of 2019.
The states will be hoping to wring some more dollars from the federal government given their soaring public hospital admissions and pressure on waiting times.
Government spending on the private health insurance rebate is projected to increase more slowly than premiums at between 1.8% and 3.2% because of indexation arrangements which are gradually reducing the rebate over time.
Smaller targets for mental health
Ian Hickie, Co-Director, Brain and Mind Institute, University of Sydney
Numerous reports and accounts from within the community have noted the flaws in Australia’s mental health system: poor access to quality services, the uneven roll-out of the NDIS, and the lack of accountability for reforming the system.
The next federal government faces major structural challenges in mental health and suicide prevention.
Not surprisingly, this pre-election budget does not directly address these issues. Instead, it focuses on less challenging but worthy targets such as:
continued support for expansion of headspace services for young people ($263m over the next seven years) and additional support for early psychosis services ($110m over four years)
support for workplace-based mental health programs ($15m)
support for new residential care centres for eating disorders ($63m).
A more challenging experiment is the $114.5 committed to eight new walk-in community mental health centres, recognising that access to coordinated, high-quality care that delivers better outcomes remains a national challenge.
Despite the commitment of health minister Greg Hunt to enhanced mental health investments, the total increased spend on these initiatives ($736.6m) is dwarfed by the big new expenditures in Medicare ($6b), improved access to medicines ($40b), public hospitals ($5b) and aged care ($7b).
It will be interesting to see whether mental health reform now receives greater attention during the election campaign. At this stage, neither of the major parties has made it clear that it is ready to deal directly with the complex challenges in mental health and suicide prevention that are unresolved.
New funding for research, but who decides the priorities?
Philip Clarke, Professor of Health Economics, University of Melbourne
The budget contains several funding announcements for research.
The government will establish a Health and Medical Research Office, to help allocate money from the Medical Research Future Fund (MRFF). This will be needed, as the budget papers commit to a further $931 million from the MRFF for:
Clinical trials for rare cancers and rare diseases
Emerging priorities and consumer-driven research
Global health research to tackle antimicrobial resistance and drug-resistant tuberculosis.
In addition, the budget includes:
$70 million for research into type 1 diabetes
a large investment for genomics (although that is a re-announcement of $500 million promised in last year’s budget)
a series of infrastructure grants to individual universities and institutions, such as $10 million to establish the Curtin University Dementia Centre of Excellence.
The government appears to be moving away from allocating medical research funding through existing funding bodies, such as the National Health and Medical Research Council (NHMRC), towards allocating research funds to specific disease areas, and even to individual institutions.
This is a much more direct approach to research funding, but it raises a few important questions. On what basis are these funding decisions being made? And why are some diseases considered priorities to receive funding? There is very little detail to answer these questions.
Australia’s allocation of research funding through the MRFF is diverging from long-held traditions in other countries, such as the United Kingdom, which apply the “Haldane principle”. This involves researchers deciding where research funding is spent, rather than politicians.
* This article has been updated since publication to clarify the 10,000 home care packages have been previously announced.
As the royal commission begins investigating the failures of the residential aged care sector, it is important such a review also considers the broader socio-political factors that have contributed to this crisis.
The commission needs to go beyond the institutional problems at individual aged care facilities, as these are a symptom of a much broader rejection of ageing in society and marginalisation of older people.
Negative stereotyping of older people is reinforced in the media, and this both informs and reflects societal attitudes. In Western society especially, we fear dependency, invisibility and dying. Aged care is a silo of these fears. And until it affects us personally, we ignore it.
How older people are marginalised in society
We have an expiry date in our society. This is not the date we die, but a time when our skills and knowledge are no longer considered to be valid or useful. Our value is largely determined by our economic contributions to society. But for many older people, this is difficult to demonstrate because they’re no longer in the workforce.
The economic impact of societal rejection of ageing is significant. Modelling by Price Waterhouse Cooper indicates that Australia’s gross domestic product would increase by almost 5% if people were supported to work longer. And data from the Australian Bureau of Statistics reveal that many Australians would like to retire later if they could.
Yet, there is evidence that older people are routinely denied work. In 2016, Age Discrimination Commissioner Susan Ryan said there was an urgent need to “tackle the discrimination that forces people out of work years before they want to leave”.
While older people should be supported to work longer if they wish, over half of Australians between the ages of 65 and 80 report a moderate or severe disability, resulting in greater dependency. A 2017 study of late-life dependency published in The Lancet found that, on average, older people will require 24-hour care for 1.3 to 1.9 years of their lives.
However, it is important that older people are not considered redundant in their societal role when dependency increases.
Aged care workers are also undervalued
Residential aged care facilities fulfil an essential role in our society. Yet, our recent ethnographic study in two residential aged care facilities in Victoria shows how this role has been compromised by an under-skilled, under-valued and overworked aged care workforce.
Older people were exposed to a revolving door of anonymous workers, significantly reducing opportunities for teamwork and fostering relationships between staff and residents. In one of the not-for-profit facilities, a single registered nurse was responsible for the care of 73 residents. This contributed to the delegation of an increasing range of tasks to unregistered personal care assistants with minimal training and delays in recognising signs of health deterioration among residents.
A reliance on general practitioners also increased the likelihood of hospital transfer. And hospital transfers can sometimes prove harmful, with previous studies showing that the noisy, fast-paced environment, bright lights and anonymous faces can have a negative impact on residents, particularly those with dementia.
Within the healthcare sector, aged care has the lowest status of all specialty areas amongst nurses and doctors. Recruiting appropriately qualified and skilled people to work in aged care is thus a constant challenge. Australia is expected to increasingly rely on imported labour to staff its aged care sector in the near future.
Ways to fix the system
Encouraging more healthcare professionals to enter the aged care sector will require a multi-pronged approach, starting with finding ways to engender more professional respect for those working in the field.
Greater emphasis also needs to be placed on improving the gerontological expertise of aged care workers. This can be strengthened by prioritising aged care in medical school education and recognising “nursing home” care as a specialist medical area. It is also imperative that personal care assistants receive greater recognition of the roles and duties they perform.
Registration of personal care assistants as third-tier health care professionals is well overdue to ensure better oversight of their training and scope of their practice.
We also need to recognise the importance of human connection in residential aged care facilities. This requires strategies to build better relationships between residents and staff, and developing a formula for more accurate staffing allocations that reflect the real time commitments involved in aged care.
Who bears the ultimate responsibility?
It’s not enough to be shocked by the aged care scandals uncovered by the media and the decision to appoint a royal commission to investigate. We must also make older people, their contributions and end-of-life needs more visible. Increased funding and oversight will only come when we collectively say it’s important.
It is incumbent on us to ensure that residential aged care facilities do not operate as holding bays for the silenced, or wastelands for the discarded, where the occupants are expected to demand nothing and be as little cost to society as possible.
We have an opportunity to reconstruct the delivery of residential aged care. Let’s begin with the end in mind: a society that not only values older people, but values the resources required to provide the care they need and deserve.
There has been no shortage of inquiries into the aged care system over the past few decades. That shocking systemic problems of neglect and abuse remain, as revealed by the ABC’s recent Four Corners expose, highlights the failure of government and industry to act on the recommendations arising from these investigations.
We can only be optimistic that the royal commission into the quality and safety of aged care will help change that. A royal commission will capture the public consciousness in a way other inquiries have not. It will document hundreds, if not thousands, of individual stories. Its proceedings will lead to extensive media coverage, and invite a national conversation. Its recommendations should prove harder for governments to shelve.
But there is no reason for government and industry to wait years for the royal commission to hand down a report. They can act now to make real progress, based on what we know already.
Three months ago the Aged Care Workforce Strategy Taskforce, which I chaired, delivered its report on ways to improve aged care. Based on listening to thousands of people throughout the aged-care sector over nine months, our report outlines 14 areas for action to support Australia’s aged care workforce in their essential role of caring for some of the frailest, most vulnerable members of society.
There is no need to wait on making the changes our report recommends.
By acting immediately, meaningful strategic reform can be implemented within the next three years. It can make a real difference to the quality of aged care well before the royal commission has completed its work.
Fragmented industry needs a unifying code
The aged care industry is fragmented, made up predominantly of small to medium enterprises spread across community, home and residential care settings. It relies on a diverse workforce under pressure from rising expectations and other changes much outside its direct control.
Our report’s central recommendation is the need for the aged care industry to embrace a voluntary code of practice. This code can help focus the minds of care providers on standards, workforce practices and commitments to quality and safety. This in turn will focus attention on the need to attract and retain committed, high-quality staff.
We are pleased the industry has embraced this idea. Industry leaders have also supported initiatives to improve the skills and qualifications the industry demands of its workers.
There is a need for the education and training sector to get on board, ensuring graduates have the skills and knowledge that support safe, quality care.
We need a holistic approach to care
One important finding from our investigation is that those in care, and their families, want a more holistic approach to caring. What they don’t want is narrow “clinical” care, one that treats mental health with a pill or judges a meal just on its calories. Well-designed care needs to consider all aspects of health, as well as cultural needs and aspirations around “living well”.
There are clear funding implications. To provide holistic care requires changing how money is spent, as well as how much.
Simply stated, as a society we have been short-changing the elderly.
That is why our first recommendation is the need for a concerted social change campaign to reframe caring and promote the importance of aged care as a work vocation.
As the report notes, shifting negative attitudes towards ageing, the elderly, death and dying is a social challenge:
It begins with understanding that care for older people is broader than organised, professional care. These factors contribute to the perception that aged care is not a career of first choice. The opportunities that ageing and aged care present in terms of employment, research, contribution to the economy and as a driver for innovation also go largely unrecognised.
The spotlight the royal commission will place on aged care should help provoke some serious social soul searching. We need a national conversation about our attitudes to ageing. We need to recognise the problems besetting the industry are but a subset of a wider attitudinal problem that has undervalued the elderly.
But the royal commission must not be used as an excuse to procrastinate. There are actions now we know we can take. We should take them.
Most older people want to stay at home as long as they can. When this is no longer possible, they move into residential aged care facilities, which become their home. But Australia’s care facilities for the aged are growing in size and becoming less home-like.
Today, more than 200,000 Australians live or stay in residential aged care on any given day. There are around 2,672 such facilities in Australia. This equates to an average of around 75 beds per facility.
Large institutions for people with disability and mental illness, as well as orphaned children, were once commonplace. But now – influenced by the 1960s deinstitutionalisation movement – these have been closed down and replaced with smaller community-based services. In the case of aged care, Australia has gone the opposite way.
Evidence shows that aged care residents have better well-being when given opportunities for self-determination and independence. Internationally, there has been a move towards smaller living units where the design encourages this. These facilities feel more like a home than a hospital.
The World Health Organisation has indicated that such models of care, where residents are also involved in running the facility, have advantages for older people, families, volunteers and care workers, and improve the quality of care.
Around 50% of residents living in aged care facilities have dementia. And research has shown that a higher quality of life for those with dementia is associated with buildings that help them engage with a variety of activities both inside and outside, are familiar, provide a variety of private and community spaces and the amenities and opportunities to take part in domestic activities.
In June 2018, an Australian study found residents with dementia in aged-care facilities that provided a home-like model of care had far better quality of life and fewer hospitalisations than those in more standard facilities. The home-like facilities had up to 15 residents.
The study also found the cost of caring for older people in the smaller facilities was no higher, and in some cases lower, than in institutionalised facilities.
There are some moves in Australia towards smaller aged care services. For example, aged care provider Wintringham has developed services with smaller facilities for older people who are homeless. Wintringham received the Building and Social Housing Foundation World Habitat Award 1997 for Wintringham Port Melbourne Hostel. Its innovative design actively worked against the institutional model.
Bigger and less home-like
Historically, nursing homes in Australia were small facilities, with around 30 beds each, often run as family businesses or provided by not-for-profit organisations. Between 2002 and 2013 the proportion of facilities with more than 60 beds doubled to 48.6%. Financial viability rather than quality of care drove the increase in size.
Today, around 45% of facilities are operated by the private for-profit sector, 40% by religious and charitable organisations, 13% by community-based organisations, 3% by state and territory governments, and less than 1% by local governments.
In 2016, the Australian Institute of Health and Welfare (AIHW) reported that residential care services run by government organisations were more likely to be in small facilities. One-fifth (22%) of places in these facilities are in services with 20 or fewer places. Almost half (49%) of privately-run residential places are found in services with more than 100 places.
All of this means that more older Australians are living out their last days in an institutional environment.
Once larger facilities become the norm, it will be difficult to undo. Capital infrastructure is built to have an average 40-year life, which will lock in the institutional model of aged care.
The built environment matters. The royal commission provides an opportunity to fundamentally critique the institutional model.
Tonight ABC’s Four Corners will air the first of a two-part investigation into the often shocking treatment of the elderly in aged care homes around Australia.
The timing coincides with Prime Minister Scott Morrison’s weekend announcement of a royal commission into Australia’s aged care system. The prime minister said poor standards had led authorities to close one aged centre per month since the Oakden aged mental health home scandal.
South Australia’s Oakden facility closed nearly a year ago, following revelations of abuse and neglect dating back a decade.
While the terms of reference are yet to be determined, the royal commission will likely look into issues already raised by previous inquiries into the sector. These include the changing demands of Australia’s ageing population, staffing ratios, funding levels and the mental health, well-being and safety needs of nursing home residents.
Below are five articles in which our experts have previously explored the complex aspects of Australia’s aged care system, drawing on research which has exposed where the problems are, and have been for some time.
Lack of medical care
Our ageing population, and the focus on helping the elderly stay at home for as long as possible, means by the time people enter aged care they are older and sicker than before. Around half of people living in aged care today have dementia, depression, or another mental health or behavioural condition.
In fact, the proportion of older people requiring high care for complex needs, which includes assistance with all activities of daily living such as eating and bathing, has quadrupled from 13% in 2009 to 61% in 2016.
Yet there is no legal requirement for all aged care facilities to provide 24-hour registered nursing care. In the article below, Jane Phillips, David Currow, Deborah Parker and Nola Ries explore how today’s nursing home residents have minimal access to quality medical care.
Research consistently shows more people want to stay in their own homes as they age. In the 2018-19 budget, the government announced an extra A$1.6 billion over the next four years for an additional 14,000 Home Care Packages. These deliver an agreed set of services to meet the specific needs of aged Australians who want to remain at home.
The government also subsidises a number (currently around 283,000) of residential care places for older people unable to continue living independently.
Aged care subsidies are allocated through a ratio, which aims to provide 113 subsidised care places for every 1,000 people aged 70 and over. This ratio will increase to 125 places for every 1,000 by 2021-22. Within the overall number of places, the government also sets sub-targets for the numbers of Home Care Packages and residential care places.
The government is aiming to amend the ratio in favour of more home care packages. By 2021-22, the target for home care packages will increase from 27 to 45 per 1,000, while the residential target is to reduce from 88 to 78 per 1,000.
But as Professor of Health Economics at University of Technology Sydney, Michael Woods has written, this still won’t be enough to meet demand.
Older Australians living in nursing homes represent one of society’s most vulnerable populations. More than 50% of residents in nursing homes suffer from depression compared to 10-15% of adults of the same age living in the community.
Recent research conducted by Briony Murphy and Professor Joseph Ibrahim from Monash University’s Health Law and Ageing Research Unit, found around 140 Australian nursing-home residents took their own lives between 2000 and 2013.
The authors found nearly 70% of those who took their own life were male, 66% had a diagnosis of depression and nearly 80% were experiencing one or more major life stresses, such as health deterioration. Around 43% were experiencing isolation and loneliness, and nearly 30% had trouble adjusting to life in a nursing home.
The small proportion of adults over 65 living with depression in the community shows that depression is not a normal part of the ageing process… the much larger figure of those suffering depression in nursing homes raises some serious questions.
Stories of abuse and neglect in nursing homes have also highlighted the issue of poor nutrition and oral health. In November 2017, the dire state of this was shown in a report of a nursing home resident in NSW who was found with maggots in her mouth the day before she died.
Researchers have long highlighted people living in aged care have substantially poorer oral health and three times the risk of untreated tooth decay than people living in the community.
Bronwyn Hemsley, Andrew Georgious, Joanne Steel and Susan Balandin collated a list of ways family members can help ensure their loved ones’ oral health is adequately looked after. This includes visiting your family member around mealtimes
…or helping the person to eat… Ask the resident permission to look into her mouth to check if she is swallowing or removing leftover food promptly.
The winners of this year’s health budget are aged care, rural health and medical research.
The government has announced A$1.6 billion over four years to allow 14,000 more older Australians to remain in their home for longer through more high-level home care places. For those in aged care, an additional A$82.5 million will be directed to improve mental health services in the facilities.
The budget includes A$83.3 million over five years for a rural health strategy, which aims to place more doctors and nurses in the bush and train 100 additional GPs.
There’s A$1.3 billion over ten years for a National Health and Medical Industry Growth Plan, which includes A$500 million for new research in the field of genomics.
Other key announcements include:
– A$1.4 billion for new and amended listings on PBS – A$302.6 million in savings over forward estimates by encouraging greater use of generic and bio similar medicines – A$253.8 million for a new Aged Care Quality and Safety Commission.
Helen Dickinson, Associate Professor, Public Service Research Group at UNSW
It was well foreshadowed that this budget would bring with it significant provisions for aged care. It has been widely reported that reforms to pension and superannuation tax have resulted in disaffection in the Coalition within older age groups.
Making older Australians the cornerstone of budget measures is a calculated political tactic in a budget that in the short term makes only limited tax cuts for low- and middle-income earners.
The A$1.6 billion for 14,000 new places for home-care recipients will be welcome, but are a drop in the ocean, given there are currently more than 100,000 people on the national priority list for support.
Additional commitments around trials for physical activities for older people, initiatives to improve connections to communities and protections for older people against abuse will bolster those remaining in homes and communities.
Commitments made for specific initiatives for Aboriginal and Torres Strait Islander people and aged care facilities in rural and remote Australia will be welcomed, although their size and scope will likely result in little to address older age groups with complex needs.
While investment in aged care services will be welcome, it remains to be seen whether this multi-million-dollar commitment will succeed in clawing back support from older voters.
Recent years have seen around A$2 billion of cuts made to the sector through adjustments to the residential care funding formula. The current financial commitments go some way to restoring spending, but do not significantly advance spending beyond previous levels in an area of the population we know is expanding substantially in volume and level of need and expectation.
A number of new budget commitments have been announced in relation to mental health services for older people in residential aged care facilities, for a national mental health commission, and for Lifeline Australia.
However, given the current turbulence in mental health services, it’s unclear whether these will impact on the types of issues that are being felt currently or whether this will further disaggregate an already complex and often unconnected system.
Equity, prevention and Indigenous health
Lesley Russell, Adjunct Associate Professor, Menzies Centre for Health Policy at the University of Sydney
The government states its desire for a stronger economy and to limit economic imposts on future generations, but this budget highlights a continued failure to invest in the areas that will deliver more sustainable health care spending, reduce health disparities, and improve health outcomes and productivity for all Australians.
There is nothing new to address the harms caused by excessive alcohol use or opioid abuse.
The crackdown on illegal tobacco is about lost taxes rather than smoking prevention.
There is A$20.9 million over five years to improve the health of women and children – an assorted collection of small programs which could conceivably be claimed as preventive health.
There is nothing in this budget to address growing out-of-pocket costs that limit the ability of many to access needed care.
Additional funding (given in budget papers as A$83.3 million over five years but more accurately described as A$122.4 million over 2018-19 and 2019-20, with savings of A$55.6 million taken in 2020-21 and 2021-22) is provided for rural health that should help improve health equity for country Australians.
Continued funding is provided for the Indigenous Australians’ Health Program (A$3.9 billion over four years); there is new money for ear, eye and scabies programs and also for a new Medicare item for remote dialysis services.
There are promises for a new funding model for primary care provided through Aboriginal Community Controlled Health Services (but no details) and better access for Indigenous people to aged care.
The renewal of the Remote Indigenous Housing Agreement with the Northern Territory will assist with improved health outcomes for those communities.
PBS, medicines and research
Rosalie Viney, Professor of Health Economics at the University of Technology Sydney
The budget includes a notable increase in net expenditure on the Pharmaceutical Benefits Scheme (PBS) of A$1.4 billion for new and amended listings of drugs, although most of these have already been anticipated by positive recommendations by the Pharmaceutical Benefits Advisory Committee (PBAC).
Access to a number of new medicines has been announced. The new and amended medicine listings are clearly funded through savings in PBS expenditure from greater use of generic and bio-similar medicines, given the net increase in expenditure over the five year outlook is around A$0.7 billion.
In terms of medical research, there is an encouraging announcement of significant further investments through the Medical Research Futures Fund. This will be welcomed by health and medical researchers across Australia.
What is notable is the focus on the capacity of health and medical research to generate new jobs through new technology. While this is certainly important, it is as much about boosting the local medical technology and innovation industry than on improving health system performance. And the announcements in the budget are as much about the potential job growth from medical innovation as on providing more or improved health services.
There is new funding for medical research, development of diagnostic tools and medical technologies, and clinical trials of new drugs. The focus on a 21st century medical industry plan recognises that health is big business as well as being important for all Australians.
All of this is welcome, but it will be absolutely critical that there are rigorous processes for evaluating this research and ensuring the funding is allocated based on scientific merit. This can represent a major challenge when industry development objectives are given similar standing in determining priorities as health outcomes and scientific quality.
Andrew Wilson, Co-Director, Menzies Centre for Health Policy at the University of Sydney
Rural Australians experience a range of health disadvantages including higher rates of smoking and obesity, poorer survival rates from cancer and lower life expectancy, and this is not solely due to the poor health of the Aboriginal community.
The government has committed to improving rural health services through the Stronger Rural Health Strategy and the budget has some funding to underpin this.
The pressure to fund another medical school in rural NSW and Victoria has been sensibly addressed by enhancing and networking existing rural clinical schools through the Murray Darling Medical Schools network. This will provide more opportunities for all medical students to spend a large proportion of their studentship in a rural setting while not increasing the number of Commonwealth supported places.
There is a major need to match this increased student capacity with a greater investment in specialist training positions in regional hospitals to ensure the retention of that workforce in country areas. Hopefully the new workforce incentive program will start to address this.
Hospitals and private health insurance
Peter Sivey, Associate Professor, School of Economics, Finance and Marketing, RMIT University