Creating a Community-led aged care system

It's time.
Time to make aged care accountable.
Accountable to who?
To citizens and their communities

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On this page we describe what a community-led aged care system might look like, how it would function and what the benefits would be. If you understand this approach and agree with what we are proposing, please help us by indicating this in the form at the base of this page.

We would like to collect and analyse responses and if we receive enough interest, report on it, and press for such a system. To do that, we need to ensure that responses are valid ones by getting details and some demographic information from you, which will remain confidential. We will not process your responses without that.

Introduction

A market-led aged care system and the government that supported it have both failed and failed miserably. The aged care system has steadily deteriorated over the last twenty years. Vulnerable citizens have been neglected and abused. 

We need a system that automatically respects the rights of older citizens and does not rely solely on ever greater regulation to do that.

Both industry and government have been concealing information from us, as well as deceiving us, by claiming a 'world-class' system and a rigorous regulator. They could not have been unaware of what was really happening and chose not to document it.

At the same time, our civil society and the communities of responsible citizens that comprise it, have been pushed aside and managed, rather than included and consulted. That has had profound consequences for the sort of society we have become.

When those who understood what was going to happen tried to warn us they were ignored. When those who saw what was happening spoke out they were attacked and discredited.

We have addressed these issues in greater depth on other pages in this section on our web site:

• Its Time to make aged care accountable: A call for action and an explanation of the way we have been deceived
• Accountability Report: Calls out the aged care market’s current strategy to shift the blame, influence politicians and remain in control. The report describes the industry’s central role in designing the market-led system that has failed.
• Why society has withered - the consequences of policy failure: The multiple similar failures in other vulnerable sectors is noted. The one size fits all policies that have undermined civil society and allowed an uncontrolled market to prey on the weak and frail are examined. The many warnings that were ignored are described.  Aged care is one of the worst examples.
• An opportunity missed - Aged Care Crisis attempts to persuade the Royal Commission: Describes Aged Care Crisis’ failure to get the Royal Commission to challenge a market-led policy and advise a community-led system instead.
• Analysis of the Royal Commission Report: An examination of the main features of the Royal Commission Report with critical comments.

When civil society, once the heart of our democracy, was strong, it held government and markets to account and ensured that the vulnerable were cared for and protected. It ensured that both government and market supported society, were accountable to citizens and did what they wanted.

Government was elected by citizens. It represented civil society and not the marketplace. Its role was to nurture, support and work with society in building and maintaining civil structures. It then represented and acted for society. It provided the support needed to control criminals and the market’s predatory instincts.

The Royal Commission recognised that governments had failed to control the market and criticised them for adopting “an unspoken assumption that market forces should generally be left to themselves”. Instead of trying so hard to control an unsuitable market system, we think they should have designed one that was more suitable and did not depend so heavily on central regulation.

Those who study society are very concerned about what has happened to it and have even described our democracy as kidnapped. They try to find ways to free it.

We suggest that society should do what it has done when oppressed in the past. It should get its act together, free itself and take back control. It also needs to elect the sort of governments who will help it to do that.

A community led aged care system

We do not want to be prescriptive. In the section below we give an idea of how a community led system might work and what the benefits might be. 

Section 1: Government's role is to build and support communities

Aged care is provided in our communities and our homes. it’s a very variable, individualised and often intimate service that cannot be run like a factory. It is not possible to provide care from Canberra or from corporate board rooms. Central managers in government and board rooms need to create structures to support regions and communities, help them and support them so that they can manage local services themselves. They should be available to pick up on problems and help local organisations when they fail or need support.

The Principles include

Aged care depends on caring and often intimate relationships, empathy and compassion as well as selflessness and altruism. These are the attributes and values of civil society communities and the caring professions in our communities - not markets.

Caring for our vulnerable fellows who cannot care for themselves is every citizen and every community’s responsibility. Anyone providing that care is doing it on our behalf. They are acting as our agents and we are responsible as individual citizens and as communities for ensuring that our agents give the sort of care we require.

As responsible citizens and communities we need a system that:

• gives us a role in planning the sort of services and the types of facilities needed by our communities,
• allows us to decide who the agents we work with will be;
• allows us to easily replace any agent who fails to meet our expectations;
• enables us to work closely with our agents to ensure that they do what we want, and
• In doing so changes the distribution of power in the system

The fold out panels below describe the way it would work and the role that citizens and communities might play.

A reach down and support approach

The first step is to decentralise the management of aged care by moving it into regions and communities. Central management’s role is to reach down, support, integrate and mentor the services provided in regions and communities providing backup when needed.

This underlying principle of building, supporting and mentoring local capacity would apply to management, ongoing oversight, regulation, assessment of applicants for care, advice and support for families, nursing and health care, advocacy and an empowered visitors scheme as well as management and oversight of funding.

Formal central regulators would work through and with the local organisations and support them. Such support would take the form of periodic visits, video meetings, one on one discussion about problems and more. 

In the panels below we desclibe how this might be done

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Decentralise management

Government’s role is to build society so that it functions well and manages its affairs well. That cannot be done from Canberra but that is what it has tried to do. Management must be moved to regions and communities where it can work closely with local governments and local community organisations in building capacity and managing aged care. Central management’s role is to support, mentor, integrate and collate information.

Background: In the 1970s and 1980s inquiries considered that the aged care sector was too individual and too complex to be managed centrally. They advised central integration of regional management with some local community involvement. 

The new belief in free markets and market management that became dominant at this time did not support this. These programs were abandoned in the 1990s. The system was centralised and managed as a market. The pendulum is swinging back. The Grattan Institute has once again recommended regional management with central integration.

The Royal Commissioner’s report claims that both Commissioners “support a strong regional presence and active intervention in the market”. Commissioner Pagone wants a system that is independent of government, and has strongly supported the Grattan model for “a network of regional or local offices throughout Australia” as well as a system that addresses “the identified needs of the local population”.

Commissioner Briggs wants to keep it under government control in the Department of Health. She considers that the department will need “a well-resourced and locally-based regional arm. Local approaches to system management are key to achieving lasting change.” It should “listen to the local community, match service solutions to local needs, and provide personal support for older people”.

We are not persuaded that there is any intent to give community the power it needs to make providers directly accountable to them. In our view the Royal Commission makes many good recommendations and tries even harder than previous inquiries to control the market, but we can do much better than that.

Involve community organisations

Regional managers and local government should encourage the formation of local community groups. Regional managers should work closely with community groups as well as the providers of care

The system should be managed by appointing staff from local communities where possible to carry out its functions. They will often be members of these community groups. They would be accountable to and work directly with both regional managers and community groups.

Together they should be involved directly in deciding what aged care services are needed in those communities, how they will be provided and in deciding who can be trusted to provide that care.

These staff and the community groups should work with the selected providers in supporting the services provided, assisting families and recipients of care, and working with the providers they have selected in, making decisions about the services provided, resolving complaints, watching over care, assisting with data collection and reporting to formal regulatory bodies.

In its report the Grattan institute recommended an ‘aged care community advisory group’ working with regional managers. That group might be involved in advocacy, complaints handling and in a visitor’s program working with regional system managers. 

We supported that and think that would be a good start but it needs to grow further than they suggest and develop as civil society rebuilds, gains expertise and progressively plays a greater role in holding providers to account.

The Royal Commission acknowledged that effective governance “requires local capacity and engagement with local networks” and “only the community can bring to bear the desire and will for lasting change”.  When we look at their recommendations we do not think that their recommendations go far enough to make this happen. 

Their focus is more on volunteers who are supervised by the providers. In our view that supervision should be by local professionals working with the providers and the local system managers.

The Royal Commission's recommendations do not give the community the power to influence the providers and hold them to account. To be an effective force community members need to have roles where they are involved and have responsibility. 

We are pressing for a close alliance and close working relationship between regional management and a steadily rebuilt and more capable civil society. This would replace the current close alliance between government and the market in aged care

Give communities representation at the highest level

The intent is to have a flexible aged care system within our communities that adapts and changes in response to changing requirements, up to date data, alternate points of view and direct experience. We need one that responds to local situations and when they work well are shared and readily adopted elsewhere. This regional and local oversight and control creates the capacity to be resilient by adapting and changing to meet changed circumstances when required

We should be very receptive to alternate views from other sectors and be willing to evaluate and test them. Outsiders often see more clearly than those who have invested their lives in a system.

What we should avoid at all costs is more endless formal reviews and inquiries and unrealistic reform agendas from people who know little about our humanity and social behaviour. As we have seen, that too often ends in disaster.

To accomplish this the community organisations should be represented by a central body that works with and has representation in central management. It should represent communities by engaging with politicians, provider organisations, medical, nursing and allied health care bodies, social services bodies, advocacy organisations, regulators, data services, academic institutions doing research and any other system that reaches down and otherwise supports aged care services.

It should work with those providing oversight, academic institutions and government data sources to collect data, evaluate it and brief its regional members.

The Grattan Institute also recommended a representative ‘National community advisory body’ working with and advising central management.

The Royal Commission did not support this. We think that the Royal Commission nibbled at the problem, made motherhood statements but did not have the courage to recommend what was really required.

We support the creation of a central representative community body to work with government and other central bodies and so bring the real life experiences of aged care to the table at every debate.

Section 2: Who can be trusted to provide care

If vulnerable people are not to be exploited then trustworthinss is essential in those agents whom the community and local managers select to care for their seniors. This is described as being a ‘fit and proper’ person or organisation. It is called probity and probity regulations protect citizens.

This section looks at how we as a community can select agents we can trust to care for our senior citizens and what we can do to get rid of them when we find they are not trustworthy.

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Deciding who the agents we work with will be

Assessing the suitability and trustworthiness (probity) of new providers:

Probity (trustworthiness) is critically important when providing care. In the past in sectors like health care, busy government regulators assessing providers of care have often accepted what individuals and companies have told them without making inquiries or even doing an internet search. 

It was community members who became suspicious, collected information, lodged objections and forced regulators to investigate further and act.

Companies are controlled by their owners. Many studies have shown that failures in aged care are strongly associated with ownership type and particular owners.

Probity abolished in aged care: Federal government plans for globalising and privatising health care were obstructed by state probity assessments of new multinational owners during the 1990s.

When government privatised aged care in 1997, it prevented this from happening by replacing probity requirements for owners in aged care with a secretive 'Approved Provider' process.

Owners buying into aged care did not need to apply and were not assessed at all. The process was made confidential and behind closed doors so no one could object and the press did not find out. But some knew and objections to several large corporate investors on probity grounds were lodged with the department. They could not be assessed and almost anyone with money could invest in or buy a provider of care without being assessed and some did.

The Royal Commission has now advised probity checks for providers and key personnel, but not for the owners (eg banks) who ultimately control policy and finances as well as appoint management.

Two sorts of assessment are required if businesses whose battery farms were closed down because chickens in their charge were neglected and cruelly treated are to be prevented from buying an aged care business instead. This happened in Victoria recently.

Probity locally: Regional managers and local community groups should check on the trustworthiness and suitability of providers seeking to provide services to their communities. It doing so they should examine past conduct and available data, about performance and staffing. They should consult with their central representative body as well as the community groups where the provider already operates.

Probity centrally: Information about local and International businesses making large investments in or buying aged care businesses in Australia should be made public. This should also apply to new providers of care entering the sector. Communities where they plan to operate should be advised and the public should be free to supply information.

Their probity and suitability should be carefully assessed by central management in close consultation with the body representing communities, who might choose to canvas their members, before they are granted approval

Easily replacing any agent who fails to meet expectations

Problems to overcome: Closing a facility causes enormous disruption to the residents whose local community of friends and staff is disrupted as they have to be moved to other facilities. Staff lose their jobs. If the owner is in financial difficulties the government is forced use taxpayers money to repay the large Refundable Accommodation Deposits (RADS) owed to residents.

It is currently almost impossible for regulators to close down a nursing home or bar a large provider from providing care. As a consequence, their ability to force recalcitrant providers to change their practices is very limited.

If a large provider like BUPA, many of whose homes have been a problem, was banned from providing care, there would be chaos for residents, families and staff. Government would have to repay up to $1 billion to refund (guaranteed) RADs.

BUPA was one of the companies where information was provided by a citizen but whose probity the Department of Health was unable to assess when it bought Australia’s largest private aged care provider Amity Health in 2007.

Removing the impediments to action: To make it easy to replace a company supplying aged care without disrupting resident’s lives, RADs need to be phased out as suggested by the Royal Commission. The structure of aged care needs to be changed by separating ownership of facilities from the providers of care. 

This is already being done by some companies who have split into two or sold off their facilities and then rented them back. One provides the care whilst the other owns the facilities. This is called a REIT (Real Estate Investment Trust).

That is one way of doing it. The other is for the regional system manager or the local council to commission the building of the facilities needed in that community, or negotiate with a REIT to do so. The costs could be covered by government grants or loans and the capital repaid from accommodation payments over the years – whichever was most suitable.

Replacing providers: Separating ownership from providers of care and eliminating RADs would allow the local regional system manager and the community to license providers to provide services and then replace any provider who fails to deliver what they require with one who does. Staffing and residents would not be disrupted but the provider managing the service would change.

Section 3: Other ownership related problems

Those who enter aged care primarily to make money build facilities that are profitable rather than those that are better suited for aged care. They also expect to make money by providing care and reject attempts to stop them from doing so. Managers of companies expect to control the facilities they operate and have a uniform stategy to preserve profitability that they can insist local managers observe. 

These potential threats to care require attention. They can be readily addressed in a restructured community-led system.

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Inappropriate facility development

Currently commercial providers, intent on making money, decide where to invest and build large facilities which are more efficient and profitable – often referred to as warehousing or 'wrinkle ranching'.

Research has shown that these large facilities generally provide inferior care which is task-focussed and less personal. Smaller, more targeted facilities have performed much better.

A community-led system would address this problem more efficiently than the incentive based strategies suggested by the Royal Commission.

Planning aged care: Separating ownership and taking control would enable regional system managers and communities to plan the sort of services needed in their regions and communities as well as the sort of facilities that would meet the needs of that community. They would seek central reach down support and advice in doing so. They would then either seek a grant to build it or work with a REIT willing to do so.

They could recover the costs of construction through accommodation payments. A provider would be contracted separately to provide that service.

Milking care to generate profits

In the 1980s reforms, funding for care and for staffing was provided through a separate stream. Providers had to account for every penny they spent on care and staffing and hand back any that was left over. It was protected from profit taking. Companies were very unhappy as they were not being paid for the work they did. 

When Prime Minister Keating wanted to abolish this his economic adviser Bob Gregory warned him not to do so because there was no way of stopping providers from taking more and more money from care and staffing. 

The next prime Minister John Howard, abandoned this funding and it became a free-for-all bunfight as companies found ways of squeezing more money from care. Gregory’s predictions have now come true.

In our view funding for care and nursing need to be protected from profit-taking, but providers should be given a fee for organising and managing the service and so make a fair profit.

Control by corporate managers from big companies

Currently managers are appointed by boards to manage the business in the interests of the provider or owner and these are often not those of the community or the residents.

To ensure that managers of local aged providers provide the sort of care communities want, communities need to have regular contact with both the local aged care providers and local government managers. 

They need to be represented when policy decisions about care are being made by their agents, the local providers. The community needs to insert itself into this process so that they can watch over their agents and counter inappropriate intervention from distant managers and boards.

It is essential that this be a cooperative project where providers and the communities they are acting for work together for the best outcomes. This releases local provider managers and staff from the commercial pressures that arise in strongly competitive markets and large profit focussed corporations. It allows them to give expression to their humanity and build caring relationships and services.

A cooperative effort: Community groups should have representation on service providers local management committees and should have a role in the caring process in which they assist and help the providers. 

Frequent outside regulation like that introduced in the 1980s can be burdensome and disruptive. When regulation is part of everyday work and interaction, and assists in providing a better service the burden is lifted. Open disclosure becomes the norm rather than the exception.

Manipulating the regulatory process

Central regulation by government has failed citizens. Revolving doors, donations and lobbying has resulted in regulatory capture.  Regulation has supported and protected providers of care rather than the frail citizens it claimed it was protecting. Data collection has been avoided or else been controlled and manipulated.

Regulatory oversight needs to be regularly on site and integrated into the everyday management and operation of each facility. The same reach down and support philosophy should be embraced.

Empowered Community: In 1985 the Giles report recommended that community should be involved in dealing with complaints. 1989 the Ronalds’ report recommended an empowered community visitors scheme whose role was oversight of care and front line investigation of problems. The industry described it as a ‘community busybody scheme’ and rejected it. 

State government bodies in Victoria and Queensland have successfully used empowered community visitors in other sectors. They have urged parliamentary inquiries and the Royal Commission to introduce these in aged care. 

It is now past time for an empowered community visitors scheme in aged care. It should be drawn from and work with local community organisations.

Empowered visitors would talk to residents, their families and staff. They would watch over care. They would become the front line eyes and ears of the regulatory process.

They should have the right to interview staff, examine provider documents, and, subject to their approval, see resident’s records. They would work cooperatively with providers to investigate complaints and any incidents they, management or staff identify ensuring that open disclosure is built into the system. 

They would be regularly on site supporting residents, families and staff whom they would work with and ensure that problems were identified and addressed. They would be trained, mentored and supported by the central regulator. When action was required they would ensure that it was taken.

These empowered visitors would be mentored and supported by local community professionals as well as central regulators.. They would keep records and report to local community and central regulators. They would contribute to audits and review visits by the regulator or the central complaints system.

Empowered visitors would work with staff to ensure that data including that for Quality Indicators and Star ratings was accurate. They would ensure that a strong focus on these measures of care did not take the focus off other less measurable care and the quality of relationships.

Note: There is currently a community visitor’s scheme that provides company for the lonely. It plays no role in oversight. The empowered visitors would work with and support these visitors supporting the lonely who would bring matters to the empowered visitors’ attention

Section 4: Building community, relationships and social capital

On the web page “Why society has withered: The consequences of policy failure” we explain that we are social animals who relate to one another and learn to trust and work together. As we do things and work together we build a sense of wellbeing and learn to deal with issues. This wellbeing is called ‘Social Capital’ to contrast it with economic capital and the wellbeing it brings. We describe how current policies have favoured economic capital at the expense of social capital

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Community involvement in local management and oversight

The regional manager would employ staff sometimes jointly with local government. If suitably skilled local people were available they would be selected. They would work closely with volunteers from community groups to carry out many of the activities.

These staff members should form a team working with volunteers in the local community organisation. Depending on their experience and skills volunteers might take on some of the roles or support and assist in others. They would report to the regional system managers as well as the community groups who would be represented on the management committees of their agents. This would enable communities to understand what is happening and participate in decisions. 

There is a growing population of retirees. Most of them have another 20 years or more of active life and potential. This is their own future they will be taking care of. Aged care provides an opportunity for them to engage, work together, make more friends and gain the respect of others – to build capacity and social capital.

Section 5: Services that might benefit from cooperation between regional managers and community organisations

To bring all this together we have prepared a list of the activities that a community-led system might be involved in and contribute to. We are not suggesting that all of them are required and different communities and their local system managers might do it differently. The primary objective is to give community a voice and the power to make providers accountable and they might do it differently.

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List of activities

1. Front line contact with members of the community seeking information and guidance
2. Assisting with Basic Aged Care Assessments depending on case complexity and skills
3. Care finder role giving assistance and advice in finding a suitable provider.
4. Regular ongoing support and advice.
5. Case management and care planning in cooperation with providers
6. Assistance in seeking respite or rehabilitation
7. Social support and activities for those in need
8. Regulatory oversight that should include empowered visitors.
9. Advocacy: Front line advocacy would be provided through the local community group and central advocacy groups would reach down to train, mentor, support and step in when needed.
   The local community group would also engage in system advocacy through their central body and not be limited to only advocating for individual residents as is the case with current government funded advocacy services.
10. Data collection: Self-collected data for Quality Indicators and star rating can be misleading and inaccurate, particularly in a strongly competitive system. Members from the community group would work with staff in collecting data for these purposes ensuring that it is accurate. They would also help in collecting other data for administration or national data bases.
11. Research: Investigators often have difficulty in investigating care because providers fear that their findings will damage reputations and profitability. Both central and local community groups could well work with academics in initiating and supporting research.
12. Oversight of funding to see that money intended for care was spent on staff, consumables and food as well as rehabilitation when required.
13. Funding would be managed by the regional system manager and watched over by its staff. The community including retired accountants might be in a position to see that money is not wasted and that it provides the care that is needed.
14. Planning of local service developments.

Section 6: Survey and support

We are seeking support and feedback on the various aspects of a community-led system to see whether there is sufficient support to drive this agenda ahead and give it some change of success.

We are looking at the sort of role and the places where community could and would be willing to contribute.

We would like to get your comments and if we get enough responses analyse them. To be sure that we are not scammed and in order to assess the responses we need some personal details which we will not publish.

• Take our Accountability Survey now.