If we are to move the entire focus of aged care into local communities, then we must create structures in the local community to take control, carry out the oversight and other functions suggested, and report to both the local community and government.
Having responsibility brings with it involvement, interest, motivation, commitment, engagement and a sense of achievement and pride. Below is an outline of what we might strive for.
The sliders explore a possible structure for the proposed hub, the relationship between government and community, some suggestions about how we can get there and how we can address the problem of a failure to cooperate with us.
The structure
A local guiding committee: I envisage that, initially at least, members of a committee to supervise the hub will be appointed by whatever community organisations and structures already exist.
Such appointees will be people with the interest, skills and experience, who are willing to contribute. They might be drawn from retirees, people employed part time, doctors, retired doctors, nurses, past carers and other health professionals, relatives, and those raising families with some time to spare.
Particular attention should be paid to potential conflicts of interest: The temptation to appoint people from the industry to act on behalf of the community simply because they have experience should be resisted. That has been part of the problem we now have.
Reporting: The hub will report back, at least annually, to the community organisations, to the public via press releases and to government departments. They will form a nucleus of people who would organise and coordinate aged care locally. They will also advocate for greater involvement of the community, for better medical care and for the development of the sort of hub we are talking about. They would form the initial local hub with the local medical community.
Government: When finally established, I see this group consulting with government to appoint trustworthy community officers who will be responsible for the monitoring of aged care in their jurisdiction and for coordination of services. The committee will supervise and be responsible for what is done and its effectiveness.
Monitoring: These monitors, as well as the chairperson of the hub or a deputy, will have access to patient and other records including confidential nursing and medical records, and permission for this will be sought from residents and family. The chairperson and/or deputies, will be responsible for coordinating and supervising all of the processes entrusted to the committee.
Service to provider: Monitors would have access to all services provided in the nursing homes and the community. They would be there to provide a service to the providers, who would work closely with the community hub, by collecting data about the services and care given. Whatever is collected, both positive and negative, would be shared. The exception would be the identity of patients, relatives or staff who have made a complaint or provided information, and have not given permission. Confidentiality issues would need to be addressed.
Chairperson's role: The chairperson or an appointed deputy will support and mentor staff working for the hub in the nursing homes and community. They will be responsible for ensuring that the confidentiality of records is preserved and that only those who need to know to make assessments and issue reports have access. The remainder of the hub's committee will be given broader overviews and summaries and will work in coordinating and supervising activities.
The chairperson or a deputy will be responsible for dealing directly with the providers of aged care services, and take up any issues with them.
Coordinating aged care in the community: The committee will create a broad organisation, embracing and coordinating all of the aged care services being provided in the community. Their primary goal will be to ensure that information, policies and practices are shared across the organisation, and that cultural silos* are rapidly eliminated. Existing service providers should be contributing to the efforts of this hub and problems should be tackled together.
It is anticipated that hubs in neighbouring localities would cooperate and share staff. Better resourced localities could support less well resourced areas.
*Cultural silos are sub groups who, for their own purposes, hide information, their thoughts and their activities from the rest of the organisation. Cultural silos impede the operation and compromise the objectives of the whole organisation.
Government and the community
The committee will work closely with a mentor or mentors in government and mediate in any disagreements between employed monitors and the government department. The relationship would be a partnership between government, the community and the various not-for-profit and for-profit groups working in the community. The committee will seek out employees who will be jointly appointed with government. Either party would have the right to veto.
Government's role is not to disengage, but to be involved, supportive and to play an organisational role. The Labour leadership in the UK is now recognising the problems that develop when the community is not engaged and has acknowledged that privatisation tends to discourage community and user involvement.
If you are from government, then a paper Joining Up Community Involvement on the Centre for Welfare Reform web site examines the problems in rebuilding local communities. It examines the government's role in addressing these so that the links between different government departments and local communities are developed and integrated.
A paper Positively Local gives additional advice for building local confidence. While the proposed hub originates quite separately, its implementation and its objectives are similar to those advocated by this UK centre and it can be seen as a part of the process of rebuilding local communities.
The community hub would:
- Coordinate aged care services in the region
- Jointly appoint staff to carry out ongoing assessments of the quality of care and the quality of life in residential facilities and in the community.
- Jointly appoint staff to address complaints, mediate where required, document failures in care and initiate sanctions with their government supervisor when this is warranted.
- Collect and collate information gathered about the services provided and send this to the hub's central body for collation.
- Support resident groups and attend resident meetings to advise them of the support the community provides.
- Act as adviser and supporter to potential residents, helping them to understand the services on offer and use the resources available to them.
- Coordinate the visitor program.
- Investigate potential providers of care and purchasers of services, advise the Approved Provider process and, where it is appropriate, seek representation.
- Arrange and support age-related community activities.
- Play an active role in combating ageism.
- Monitor expenditure by examining the books of services to ensure that public money and money paid by residents is being spent in an appropriate way, one that ultimately benefits the residents. Investors who have invested their wealth in improving our aged care system deserve a safe and secure investment with a reasonable return. It is in the interests of the community to keep good operators in business.
The community would be expected to support those who genuinely serve the community, and get their profits by doing that well. Aged care is not the place where investors should come to make a quick profit. Those attracted by wildly exuberant analysts might be better off elsewhere.
Becoming an effective customer
Having the community drive the local ageing agenda, oversee complaints, monitor standards, collate local information, be involved in advising on sanctions and advising potential residents, would put them in a commanding position in regard to the providers of services, who will need to discuss and justify their programs to the rest of the hub. The community hub would become the real customer.
Funding
The hub would be not-for-profit with a volunteer committee and volunteer members, but with financial support for secretarial assistance and equipment. Staff carrying out monitoring and complaints activities and advisory roles would be paid by government and be jointly supervised.
How do we get there?
What I am suggesting would require revisions to legislation and much reorganisation and training. The community should be involved in advocating for this and in negotiations. These suggestions are unlikely to be adopted willingly by all parties.
The first step: would be for interested parties to form local groups that recruit retirees, relatives of present and previous residents, nurses and doctors, and then seek representation and support from community groups including bodies like National Seniors.
Such groups would start collecting information about local aged care services, coordinating aged-related activities, advising potential residents, running local seminars with guest speakers. They would carry out as many of the proposed activities as possible, demonstrating their commitment and determination. They would start advocating for the creation of a local aged care hub.
At an early stage, communities would form a central organisation to drive the issues, talk to provider groups and advocate to government.
We would not be the first to think about moving oversight of services into local communities. England has already formed a community organisation operating in multiple localities to monitor local health care services - but not yet aged care.
Resistance to the idea of a community driven hub
It is possible that during the early stages, some organisations or even governments, may resist the idea and refuse to cooperate and work with the community. Governments that are committed to partnerships with the community would be expected to support it.
Resistance is particularly likely to come from those whose profits are based on maximising the potential of the present system by doing the minimum to meet accreditation requirements.
In this instance, community groups pressing for the hub may well need to become an aged care "community watch" group - visiting residents, observing, collecting information from residents, their families, and from staff (confidentially) as best they can, then reporting that. At the same time it will seek more support from the community to drive the campaign using the information collected.
The information a "community watch group" collects can then be contrasted with information coming from other sectors where providers cooperate. It would be very unfortunate if this became necessary as a refusal to work constructively with the local community would generate much greater distrust.
The goal of the hub is to restore trust and trustworthiness by developing a healthy provider/customer relationship. If increased distrust were to develop, then a "community watch" approach would be sad but necessary. The long term benefits for the frail aged would justify it. The current situation is untenable.
Trust - which is so important for a successful aged care system, is only possible if it is based on solid evidence, real local experience and shared understandings. These would be attained by entering into a constructive partnership with the providers.