The shift to increased client control in home care risks pushing family carers to the background, writes Cathy Duncan.
Much of the current information regarding consumer directed care can lead to the assumption that the consumer is only the individual who is receiving care.
Whilst CDC has provided many older people with new choices in services, it may have also created a new dilemma for providers in how to balance the need to provide individualised service directed by the care recipient and somehow continue to value and work in partnership with family and friend carers.
My interest in this issue has come about as part of my current PhD research into the impact of home care package reform on the experience of carers and from my previous experience as an Aged Care Assessment Team social worker.
In this role I saw how working in partnership with informal carers was not only core business for package care providers but an effective way to keep older people at home for as long as possible.
A shift in carer policy
Working last year with Dr Lyn Phillipson at the University of Wollongong on research into flexible respite care we observed that something big has changed in home care packages and carer policy, and in some cases the practice of service providers, about the value of working with family carers as partners in care.
Our research discovered that the notion of the individual in CDC had in some situations led to family carers being placed very much in the background of assessment, care planning and service delivery.
We also studied the national reform in carer policy and saw that while the creation of a national Carer Gateway has raised the profile of the valuable contribution of carers, it also unintentionally created an artificial separation between the carers and those receiving care from the care and kinship relationships that underpin and connect them.
Separating the carer from the older person was never the intention of the 2011 Caring for Older Australians report, which regarded the central role of informal carers in maintaining older people in their homes as “not only fundamental to those they care for, but for the functioning of the aged care system as a whole.”
Despite what has happened at a policy level to separate the older person from their carer, most aged care providers are well aware that family and friend carers not only provide significant levels of unpaid care, they can also play a role in maximising the effectiveness of package services.
How then can providers incorporate what they know about the good practice of working in partnership with carers into individually funded consumer directed care packages? Perhaps the other key question that needs to be answered is why should service providers still strive to engage with carers in this new world of individualised consumerism?
Part of the answer to this question can be found in two key areas of policy. The first is the Aged Care Sector statement of principles, released in 2015 by the Aged Care Sector Committee, which defines consumers as the older people requiring support “as well as their families and the informal carers they choose”.
This is a very significant definition of the term consumer in the context of care and kin relationships that gives permission for aged care providers to continue working in partnership with family carers.
The second is a piece of legislation that sadly is omitted from the long list of legislated rights and responsibilities of home care package providers and consumers found on the Department of Health’s website. The Carer Recognition Act 2010 states that the relationship between carers and the persons for whom they care should be recognised and respected and that carers should have choices and be considered as partners with service providers in the provision of care. Anecdotally, it appears this is not a piece of legislation that aged care providers are generally aware of, and I will be exploring this further in my research.
We therefore have two very good reasons, based on policy and legislation, why home care providers should be actively developing their own organisational policies in relation to working with carers.
The third reason why it makes sense for providers to acknowledge the care relationship, and not just perceive older people as individuals, is that it represents what we see and know from our own experience of families as the web of interconnected kin and friend relationships that largely supports older people to remain at home.
A further reason providers should respectfully engage with family and friend carers is that it makes sense from a marketing perspective. We know it is usually the family carers who are doing the legwork for their older relative in researching options for potential service providers.
There is an opportunity for providers to actively publicise how their service encourages and supports family carers to be partners in care. This potentially creates a marketing advantage from other organisations that just focus on providing the individual older person with choice and control.
Practical strategies for carer engagement
So how can service providers balance the competing needs of older people and their carers in the reality of limited individualised budgets? As mentioned, a formal organisational policy on how to respect and engage with family and friend carers is important. This can create a foundation for embedding a culture of working in partnership with carers at all levels of the organisation.
In the absence of a formal policy and training regarding engaging with carers, the staff at all levels of the organisation will continue to operate from whatever personal values and attitudes they have towards family and friend carers. These can range from seeing carers as just a source of background information to help with undertaking assessment and care planning, to seeing them as valuable partners in care planning and service provision.
If they have the latter perspective they will actively seek opportunities to ensure that the benefit of the service for the older person flows on to the carer as much as possible.
Organisations can also actively form effective working relationships with carer support services in their area. This will open up collaborative opportunities for both home care package providers and carer specific services to support both the person receiving care and the carer. This is particularly so in times of increased need such as when a carer may be unwell or needs to focus on other responsibilities. Interagency collaborations are also effective ways of making the dollars stretch further when services can be more flexible if working together.
In the context of encouraging home care providers to work with family carers as partners I need to acknowledge two extremely important exceptions. First is where there is a real or suspected case of abuse, and I will add from my ACAT social work experience we should not always assume the victim is the older person receiving care and the perpetrator is an underhanded family carer. I have seen situations where it is the other way around.
The welfare of the individuals in these circumstances need to be protected and supported first and foremost, above maintaining the relationship if needs be. The second is perhaps an easier scenario to navigate and that is where older people who need home care packages have no identifiable carer.
In these situations I encourage service providers to think outside the box about what possible carer relationships and supports that exist, such as neighbours, local community groups or friendships through past work and hobbies. There are of course some people who have no-one.
Carer recognition framework
Over the next 18 months of my PhD research I will be working with Carers NSW to investigate the experience of family and friend carers and older people receiving a home care package to develop a framework for carer recognition in the home care packages program. I will be interviewing older people who are receiving package services to gain their perspective, and working with providers to seek their views on the draft framework.
I am keen to hear from home care package providers about the particular challenges of working with carers and the effective strategies organisations have in place for respecting, recognising and partnering with family and friend carers in keeping older people at home for as long as possible.
Cathy Duncan is a PhD candidate at the University of Wollongong and a research fellow at the Australian Health Services Research Institute.
This article appears in the current Winter edition of Community Care Review magazine.