Steps to the hub

Where we want to be

There is currently a large power disparity between residents and their families with little effective redress. One way or another this must change if we are to have a market that works.  The proposed Community Aged Care Hub would be drawn from those in the community that the sector is serving.  These would ultimately be people who have expertise and/or real experience in the sector, including those present and past families of residents that have become involved in the sector and what happens there.

These hubs would be working in these facilities and in the community. They would have full access to what was happening there. This would be where families would turn for advice.  The hub and its community could potentially put a facility or even a company out of business.  This power would give them considerable leverage when engaging in discussions with providers. Issues would have to be resolved and it would be in everyone's interest to do so amicably. 

But this situation does not exist and we are still a long way from it.  What can we do to get there?  What path can we follow?  What is happening now - and what are the options?

Where are we now?

Individual action: To date, issues have been taken up by dedicated individuals who have had a bad experience and then gone to great lengths to confront the provider and then government.  The gut response has always been to press for tighter regulation, which they see as the problem, rather than press for changes in the system that would prevent them. To date, this approach has not been effective in Australia. It has not even worked in countries that actually collect data and that have had far more rigorous oversight.

Collective action: To combat the power imbalance that lies at the root of the problem, residents and their families in problem homes have started working together and organised themselves. They have realised that the regulatory systems don't actually work and they cannot rely on them. They have starting collecting data, documenting incidents and then acted together. They have collectively challenged providers and/or governments.

The next step: I believe that these groups will realise that there is power in numbers. They will recognise this and form alliances with other groups and gradually amalgamate. They will pool data and the long process of changing the system will start. This may well take another 20 years of repeated scandals, angry accusations and denials and ever increasing distrust in the community until the system becomes unmanageable. This must ultimately end with the community seizing the power that it needs to deal with issues effectively and this will be done locally.

Finding a short cut: Aged Care Crisis is attempting to prevent all this by rallying the community and pressing providers and government to engage in real constructive debate around these issues. The proposal is for a local regional solution that requires all the participants to work together and resolve their differences.  This will only work if the power imbalance is corrected. As indicated earlier in this section, a regional solution was proposed 15 years ago but was ignored.

Since that time, our knowledge and our ideas have changed. The importance of an ongoing role in life for the elderly and continued relationships with the community for quality of life is recognised. It is also now recognised that community services to those in need are best provided in close cooperation with the community. Experience has shown that the community's involvement depends on their being in control of their own affairs. Aboriginal Health is the best example in Australia.

The proposed Community Aged Care Hub will oversee local aged care services.  It would be a focus for, and play an important role in integrating aged and community related activities. Additional advantages will be discussed on subsequent web pages.

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Resistance grows: Examples

There are examples where the residents and their communities have fought back successfully.  The first step is when residents families discover that they are not the only ones affected.  Their experience is not isolated and others are having the same problems. 

The second step is to organise and make an effective response.  There is little point in depending on authorities although they need to go through the processes. Ultimately it is their effort, their resilience, their determination and the broad support in the community that they enlist that will have an impact.

Examples 1 and 2

Example 1

The residents of Urxxxxxxra Retirement Village bought into this village on prime land in Harvey Bay in the early 1990s.  There was an owner they trusted. But in 1994, a for-profit company Myyyy that already owned nursing homes and retirement villages (where there were later also many problems) acquired all the facilities of its owner.  Urxxxxxxra was far away from its NSW operations and the new owner wanted to buy out the residents and develop the land as a more profitable holiday resort.

The offers made to residents were unreasonable and coercive.  A 16 year saga commenced as the new owner pressured the residents and they fought back through tribunals and then the courts. Many gave up and accepted the offer, others died, but a hard core fought on and won the final court action in 2010, sixteen years later. One of the residents kept me briefed with documents and I told the story on a web page where I analysed this company.

Example 2

MXXXX GXXXX nursing home in Victoria was one where the bonds paid were not protected by the federal governments guarantee.  Many residents may not have realised this - or the risks. The Victorian government were responsible for oversight and for protecting the residents. The company was actually in serious financial trouble. The government body responsible for oversight had been aware of this for some years, yet they had done nothing and had not warned the residents or prospective residents who paid large bonds.  When the company collapsed in June 2013, the residents "most of whom were over 90 including three centenarians" - lost the $4.5 million they had paid in bonds and they had to move.

The residents and families led by a gutsy 91 year old, took the battle to the government holding it responsible for their losses. With an election looming, the government ducked and weaved. The Ombudsman finally came to their assistance and the government reluctantly agreed to pay them the money they had lost in April 2015 nearly 2 years later. By then, many had died. There is some information here.

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Example 3

The marketplace trail:  This example occurred in a nursing home in Australia purchased by a private equity owned company.

Private equity companies make their big profits by buying other businesses, using their business skills to restructure, reduce costs and increase profits.  They rapidly turn them into a much more profitable business than the one they bought. They then sell the businesses for much more than they paid.

This usually takes from 18 months to 4 years and they sell as soon as they can get the right price. These strategies have created enormous problems in the UK and also in the USA as a result of the financially risky strategies used and the cost cutting. Care has suffered and financial stability compromised. 

Residents taking action: Residents and families in one Australian private equity owned nursing home - XYZ, are so disturbed by what is happening in their facility, that a large number of them have banded together and organised themselves into an action group. They have systematically documented the staffing cuts that have occurred, failures in care and attempts to reduce the costs of meals. They are using these to challenge the company’s management and demand justification for everything that is being done.

They complain that there has been a steady decline in staffing, in services and care over the preceding year. There have been large recent cuts to staffing without any consultation with residents. Management claims the changes are to improve care and deny the problems.

The residents systematically gathered information and demanded responses. After some delay, they are making inroads and some positive changes are occurring.  If the private equity firm behaves like other private equity groups, then it will do its best to do an absolute minimum.  The residents will have to use all of the available channels open to them.

It will be very interesting to see how long this will take and how much effort will be required. Will the company make real changes - or will they drag this out and sell earlier - leaving the problem to the new owner.

Having submitted their well-documented submission to government authorities, it will also be interesting to see how they respond.

The risks for residents: A potential problem for the residents of private equity owned facilities is that when the business is sold at a large profit, the buyers will have to repay loans and reward their shareholders. To do so, they will need to maintain this excess profitability in order to pay the interest on loans and give their shareholders the promised profits. They will not be able to increase services or provide better care. Any losses to care and services that occur now are not likely to be redressed when the private equity company sells.

The more that the residents can impede the sale and the lower the price obtained, the less pressure there will be on the new buyer to cut costs further and the better off they will be later. For the provider, it is a financial race to the top, for the residents it can be a slippery slide to the bottom.

An analysis of the market in the UK where Private Equity has been a particular problem has shown that the cycle of repeated sales is supported by a succession of ever more complex and risky financial transactions.  This renders the companies ever more vulnerable to any economic downturn and less able to respond to the needs of residents. 

In this marketplace, the competition has nothing to do with care - and all of the competitive practices on which success is built come at the expense of the care of those the companies are responsible for.

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Example 4

The 4th example is exceptional in some ways because the owner responded quite expeditiously when the residents banded together and confronted them. They did not have to spend years fighting for decent care and none of them had died by the time it happened. Too often the response, like that in Example 3, is to deny the claims and in other instances make claims to excellence in exactly those areas complained of.

Standards of care in this Melbourne facility had deteriorated badly in 2012. There were serious issues with the manager and with the staff in the facility. Residents and families met to discuss their concerns about the poor quality of care at the facility caring for their mother and/or father. During these meetings, allegations of poor management, theft, negligence, incompetence, illicit drugs, bullying, racial vilification, and damage to property were made. A resolution of no confidence in the manager was passed at the meeting.

The families and residents then made a long and detailed list of all of the problems and failures in care at the facility. They sent this to the owner asking they respond to them. While the owner did not respond to the document, changes were made. The manager was replaced and some staff were fired.

When a problem was encountered later the new manager met with the residents and addressed their grievances. We do not know to what extent the residents and families are now being included in management decisions. Will they be in a strong enough position to prevent a recurrence of the problems if and when the owner is purchased by another market listed corporation as part of the current industry consolidation.

The report on this endeavor is an excellent example of how to go about this and could be a blue print for others to follow.

• An aged care facility in crisis: Consumer action to improve standards of care Research Matters, September 2012

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Learning from the examples

The examples on this page illustrate what we are trying to accomplish.  They help to explain what we mean by the proposed Community Aged Care Hub as well as describing a path to it.

The last two examples have many similarities with the proposed hub

The residents in Example 3 and 4 did exactly what the proposed aged care Community Aged Care Hub is intended to do. They collected information and took it to management and asked them to deal with it. One of the residents involved in Example 4 expressed the sentiment that "Relatives wanted to work in partnership with staff. We did not want to feel as though it was 'us' and 'them'".

We also want the residents, families and the community of which they are all a part to be working with management and not against them. We want a common purpose and to be pulling in the same direction.  The only difference between what these residents want and our proposal is that we want this to be an ongoing process with the residents and community collecting information in an ongoing manner and then working together to improve the process.  The cycle of continuous improvement that the accreditation agency requires a pile of paperwork to show, would be introduced in action and totally transparently for all to see.

The response in Example 4 is interesting because we seldom hear of rapid responses like this, but that may be because they don't get any publicity.  The responses we hear about are more like Examples 1 and 2.  In most of these instances it has been individuals that have taken up the matters and they have much less power and are more easily dealt with.  Few have been as organised as these two examples. It is when there is resistance that more pressure is required.

When the group has carefully collected and acurately documented issues, it becomes much easier to go to the next step and take it to authorities.  When all else fails then the media are often prepared to help.  The more clearly the failures in care and the refusals to address this are documented, the easier it will be.

If you look at the proposals for a Community Aged Care Hub, you will see that these community groups are doing exactly what the proposed hub would be doing, collecting information and talking about its findings. It is the first step to creating a hub.

By organising themselves, by collecting accurate information and by taking action as a group, they have put themselves in a much more powerful position and addressed a major problem for those who are unhappy. When they are met by unreasonableness or recalcitrance, they can take it to the complaints system and the Aged Care Quality Agency. But many have had problems with both and this has not been effective. Some have gone to the press and still not succeeded.

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What the proposed hub adds to this

Many facilities do not have a cohesive group of family members ready to form the sort of groups that we have seen in all the examples.  They also don't have a leader with the knowledge, intellectual strength and confidence to take the lead as these groups did.

The additional advantages of the proposed hub include:

1. Turning a response to a crisis, into an ongoing cooperative process, a process that prevents crises from occurring because problems are identified early and dealt with.  The problems described in the examples would have been prevented, or in the case of the first two examples, dealt with expeditiously when the community was involved in their plight and was working with and for them.
2. Providing a structure to support resident families and communities when they form groups like these.  The hub would already have collected a body of data for them to use.  It would be working with them, or even in their place, when they do not have the resources to achieve the desired outcomes and resolve problems themselves.  The hub's focus is to support and involve residents to the extent that they can do things for themselves.
3. Providing the same support to individuals who identify problems and want them addressed.
4. The hub would be the data collection, regulatory and general oversight arm of the local system.  It would be the first point of call and primary investigator for complaints, and be the ongoing regular assessor for the accreditation process.  It would be the entry point for the advocacy service.  As such, the hub would bring all of the regulatory processes directly to the bedside for residents and their families.  When there were problems they would be immediately investigated, checking the notes and other records to see what is actually in them at the time of the complaint and talking to staff before they have been told what to say by management and their lawyers.  It will no longer be possible to fix something and then deny that it has ever happened.  It would make the gaming of the accreditation system impossible.
5. The hub staff and by implication the families become part of the process of addressing problems that occur, working with management and staff. They will be able to verify that problems have been properly addressed and that this becomes normal practice.
6. There may be some resistance to working and cooperating with the hub and with residents and families.  Managers see this as a service or a package that they are providing to a customer and not as a joint venture with them and their families. The power that the hub will have will make this untenable.
7. The hub would be working with prospective residents and will be in a position to advise them on the sort of care and quality of life that can be expected in each local facility as well as details of the facility's performance.  Stressed and confused people will be guided and helped.  They will not be excessively influenced by glossy advertisements and make ill considered decisions.  They would become effective customers and make the market work.  Good care would become the road to profitability.  Being the primary support and when needed the proxy customer would give the hub increased power.
8. Because it would be largely drawn from families and community and would be representing them, the hub would be the face of the community and of civil society in aged care.  Through the central committee the proposed hubs would have representation on the Approved Provider Process and ultimately have the right of veto.  The community itself would ultimately decide which organisations were suitable to provide services to their community and those decisions would be based on data collected by other hubs in locations where the applicant for approval already worked.  In a functioning democracy it is civil society that makes broad decisions like this.  It is not in confidence and behind closed doors as at present.
9. Because of its close relationship with the customers and its control over who ultimately succeeds in this marketplace, the hub would gain the power to force the provider and its owners to talk constructively and positively to them, to see their point of view, respond and to build relationships. When this happens people relate to one another and trust is restored.  Those who abuse the trust others put in them pay the price.

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Different worlds

Providers often come from a very different background to the residents and families.  They really do live in a different worlds and most really do believe in what they are saying and doing. This influences how they think.  That is what happens on our human planet and there are large numbers of examples.  The problem is that too many of us cannot accept that it happens in our world and that our view could be flawed.  We just don't see it as others do.

Strangely the world of pain, suffering and neglect, even if they see it, is not registered as such and is not considered when making decisions.  The real world of experience is explained away or ignored.  Over 200 years ago, Adam Smith the founder of modern economics argued that people who believed in what they were doing were far more of a problem than deliberate criminals. When we meet these genuinely likeable and often charismatic individuals they do not fit the image of the evil abusers and exploiters. We like and relate to them.  We accept what they say rather than examine the evidence.

The reason why that other world cannot or will not see what is in front of it is interesting.  The explanations are complex and sometimes difficult to accept. Many have tried to explain it. I will try to explain how these worlds form, how they maintain their legitimacy, why they can't accept what they see and how the battle lines are created but I can't promise to convince you!.  It is complex and not easy to begin with. We have to delve into the complexities of human nature and identity.  When you get an opportunity to look closely I assure you it happens and quite commonly.

Example 5

Many years ago I found myself forming friendships and talking with different groups of people who lived in four different worlds in the same place, at the same time and confronted the same events. To keep the channels of communication open, I had to adopt the patterns of thinking in each one of them and be a different person in each.  I had to understand and accept their world. It was a unique opportunity to see this in action, to see what was happening as others saw it and realise why they saw it that way. The relationship between these groups in the wider community was structured to avoid what I was doing.  I first met them outside the country and then later in the country through work.  I was able to bypass the barriers.

Over the next 20 years in this country, vast numbers of these same groups of people suffered and many died violently. People I knew were incapable of grasping or acknowledging this to themselves. Censorship helped. There were many battles that were won or lost. It was only when the disadvantaged banded together, organised themselves and attained enough power to disrupt society, that the groups with power sat down and talked to them and saw the world through their eyes.

This was a unique exception. In most similar situations this has not happened. Distrust and anger have dominated and opportunities ignored.  It has ended in revolutions, civil wars and world wars (eg. Syria). This is the legacy of the 20th century and we are still living with the debris.

In this unusual instance, both the leaders of the disadvantaged and the abusers with power overcame their anger and distrust, recognised what was happening and started talking to each other.  They learned to see through the other's eyes and understand.

The powerful were forced to this realisation after years of resistance. The truly exceptional conduct here came from the leaders of the disadvantaged groups.  Not only did they understand what was happening, but they had contained their anger and bitterness and had been listening and understanding the world of the powerful.  They had planned ahead and organised themselves.  They would not compromise on the essentials and were not prepared to negotiate from a position of weakness.

When the opportunity came, instead of plunging into war, they were waiting and welcomed the opportunity to engage constructively. They talked, persuaded and forgave. I learned of this planned approach when talking to them in the period 20 to 30 years earlier.  While they were in prison or in exile, they had stepped back and looked as an outsider, studied, listened, read, debated then then planned. Even when mistreated, they understood. They balanced the sacrifice of a whole generation against what needed to be achieved. They were quite open about it - pressing ever harder but waiting. 

But by the time they gained power these leaders were old.  Those who had not been killed were old and were soon replaced by others that did not have their knowledge and backgrounds.

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Making it happen

If we look at the first two examples and the battles that isolated individuals have fought in aged care we can see a very similar situation.  Battle lines were drawn, accusations and counter accusations made.  I was indignantly threatened for writing about this by the entrepreneur who founded the company in example 1. Copies of indignant letters to politicians claiming unfair treatment by the courts were distributed around the community.  It dragged on for 16 years.  As this section on the site shows these examples are a microcosm of what has been going on across the entire aged care sector in recurrent cycles for almost 19 years.  

With sufficient insight, both of the aged care worlds now setting out the battle lines in aged care could learn from this and go directly to addressing the power imbalance and debating the solution.  But to work, this must be done and extended to the community and to the nursing homes.  Regulations alone do not address the cause of the problems they try to regulate.  It is more sensible to address the reason why failures are occurring and in doing so change the way people think about what they are doing. 

It is a change that should occur in the community itself so that relationships and friendships form as the changes take place.  With that comes trust.

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The pressures in the system

It is interesting to speculate on the possible dynamic in the examples given here.  Do they illustrate the way the system works and the forces at play?

The first example was a large company with a corporate empire that included hotels and other business activities as well as retirement villages and nursing homes.  It was led by a strong willed driving self made entrepreneur.  The second was a problem with government compounded by an election.  The third was private equity, the most strongly profit focused.  We do not know to which of the groups the fourth example belonged or how big it was.

From what I have seen in the USA and Australia, I would expect the most business focused, profit driven and largest to be the most difficult to deal with.  Smaller less commercial entities are more likely to respond positively although some examples in Australia suggest that difficult problem owners of small companies can be very difficult to deal with.

Studies in the USA show a clear pattern in numbers of staff and in failures in care when set against the pressures and focus on profitability of the section owning the nursing homes.  I would expect that resistance to their cost cutting would follow this same pattern.

The earliest study in the USA done in 1994, by the equivalent of our Choice magazine, showed that a number of the privately owned for-profit companies with a smaller number of nursing homes were among the best operators, outperforming the not-for-profits.  These owners would have responded far more readily to evidence of failures in care.  Many in those early years entered the private sector with strong humanitarian motives and I like to think that they would have responded well. The same thing happened in Australia in health care and possibly aged care.

But other private for-profit owners in the US study were among the worst.  This I have considered as an indication of the profit motivation that underpinned their involvement in aged care. As indicated elsewhere in this section we saw an example of this in Victoria when the liberal government in the mid 1990s enticed entrepreneurs who knew little about aged care to enter aged care as a business enterprise.  They were among the problem homes in the early 2000s and some went under.

The problems in the USA and now in Australia are primarily in the private equity and market listed corporations as well as in those aspiring to list on the share market.  Here there are very strong pressures away from care and towards profitability.  I would be very interested in the sort of company in Example 4 to see if it fits the patterns that my unproven hypothesis suggests exists - or confronts it.

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The proposed Community Aged Care Hub

In aged care there is a steadily growing number of people who are critical of aged care and what is being planned and done. They have the evidence and the logic, but that has little impact without credibility and/or power  The big problem then for any disempowered group is gaining enough support to be credible and the power to insist on your arguments being properly confronted. The way to gain enough power to be considered and taken seriously, is to form relationships with others groups, gain allies, and to learn about and understand the other world you want to change.  You need to discuss among yourselves and decide what the key issues are.  People need to be pulling in the same direction.

Plan and structure activities while consistently confronting the more powerful and credible world.  Expose its flaws and fallacies until it ceases to function effectively, loses credibility, becomes ridiculous and has to talk sensibly. Critically important is the willingness to be welcoming and reasonable, but not to give ground and settle for something that will not work when the opportunity presents.  That will set back any solution by many years.

This could have a long way to go before our combined efforts result in more than a local skirmish. Issues of credibility, a lack of confidence and the fear of confrontation and change in the community can cause it to take another 20 to 30 years before there is enough support to force change. It is a necessary beginning.

Our best hope of getting there without battling for another 20 to 30 years is to get the message across to the community, to the providers and to politicians, that the only way to resolve this is to stop reacting and resorting to sound grabs and to step back and think - then give the people who are struggling the power they need to insist that they be heard not only in offices and meetings but in the community.

This should not be a hard argument to win because we have over 200 years of market theory and experience that they cannot logically ignore. We have only been ignoring well established theory and human experience for about 35 years - a relatively short time historically.  We all know or should know that for a market to work it is the customer that has to have the final say. We simply have to insist on this. 

If we look, we will see that markets have failed in every sector where the customer is vulnerable and aged care is not an exception.  It is one of the things that believers are unable to acknowledge. Logic and evidence are on our side, but it requires much more than that when we are confronting people who have no doubts about themselves and what they do. But we are not the only ones thinking this way so there will be support.

The world out there is changing

Emerging global 21st century patterns of thinking recognise what is happening in politics and markets. They question current policies and practices.  Their proposals for a way forward are based on restructuring society so that transparency of knowledge and the involvement, participation and empowerment of citizens replace our current command and control system. They are pressing for a context where different views are always present and have to be confronted and considered.  One where citizens have the power to ensure their views are considered constantly and not only just before elections. 

Australia quietly started down this path engaging with others globally at the beginning of the century. It was a founding member of the open government movement.  A change of government in 2014 and a deluge of rhetoric and sound grabs stopped it. This new movement is a partnership between government and civil society.  It is based on transparency and on forms of democratic participation where civil society participates in managing the affairs of the country.  It is a movement that is attempting to rescue our democracy and we should be a part of it. It offers us an opportunity to cast off the debris of the 20th century and have a better 21st.

On the web page Aged Care Roadmap in the Introduction section I have placed a table comparing the system we currently have with the sort of system the hub propoosal is intended to provide.

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Where to from here

In this section of the website, I have looked at the consequences for those who have no choice but to live in the world that the powerful and credible impose. I have looked at the early beginnings of dissent and revolt. In subsequent sections, I will be exploring and illustrating what is happening in different ways, ways that throw additional light on the problems.