The role and needs of family carers are being pushed to the side as an unintended consequence of the Home Care Package program, according to a researcher who has developed a carer framework for providers.
University of Wollongong researcher and former ACTAT social worker Cathy Duncan says she’s hopeful providers will adopt the Carers Reference Framework, which has been developed in partnership with Carers NSW to guide the way providers interact and engage with those who care for their clients.
Research she undertook in 2015 suggested the shift to increased client control in home care risked pushing family carers to the background because it put the consumer at the centre, creating a dilemma for providers about how to provide individual service while also working in partnership with families and carers.
Ms Duncan says her current research now shows that today, while many carers report positive experiences, a percentage say they are still not being acknowledged or treated with respect by providers.
“The more I’ve researched into this area I think the situation is worse than I anticipated,” she told Commuity Care Review.
Long home care waiting lists and large numbers of people receiving less than their approved level of care is putting additional pressure on providers and family carers, she says.
Carers needs overlooked
During an update on the Carer Recognition Framework at the Carers NSW conference in Sydney last year, Ms Duncan said results from the the 2018 Carers NSW Survey found 83 per cent of carers felt providers had included them in decision making, however almost half said they had never been asked about their needs as a carer.
Approximately half agreed that aged care services had enabled them to take a break from their caring role and 42 per cent agreeing that aged care services supported them to look after their own health needs. Nearly half of respondents disagreed, however, that aed care services had enabled them to stay in, or go back to, paid work.
Carers were also frustrated that they had little indication of when support would arrive, leaving them unable to plan support or decide whether they are able to provide care for an extended period of time.
Legislative basis for carer recognition
Duncan says the carers framework would realign the home care packages program with the Commonwealth Carer Recognition Act which says carers should be considered in partnership with service providers and stipulates the relationship between carers and the person they care for should be recognised and respected.
This had been was acknowledged under the old HACC and now CHSP system but has not carried through into the HCP program, she says.
“There is a legislative basis for engaging with carers,” she says.
“The Framework for Carer Recognition is a way to conceptualise how carers can be included, so it’s really a bridge between the Care Recognition Act and the HCP program.”
She says NSW South Coast HCP provider Bay and Basin Community Resources has included a focus on carers in their service delivery as part of a research partnership.
“They’re really excited about the idea of having some sort of formal conceptual framework,” she said.
“So yes, there are some providers who are looking for some way to guide them, but perhaps there are other providers where it’s still off the radar.”
There is also a need to embed the framework in policy and develop training for providers, she says.
Another disconnect for carers has resulted from a failure to integrate the Carer Gateway and MyAgedCare portals, Ms Duncan says.
“The carers gateway is a fantastic resource for accessing services but what’s happened is there’s a disconnect between MyAgedCare and the Carers Gateway, so we can have someone registered in MyAgedCare and a carer calling the Carer Gateway but there’s no way to put the two together.
Role of carers is crucial
Ms Duncan says the importance of supporting informal carers was highlight in a Productivity Commission report as early as 2011.
“Absence of informal care is the single most common trigger for an older person moving into residential care,” she says.
“The role of carers is not only fundamental for those they care for but for the functioning of the aged care system as whole.”