Is the unpaid assistance provided in the main by family caregivers or other close relatives, friends or associates still necessary, or have carers become a problem? Do they require a new specialised management approach to ensure they don’t get in the way of the competitive process of service provision or go on to become long-term welfare dependents?
It is commonly, if wrongly, argued that formal services substitute for unpaid carers. We’ve all heard this argument before – for example, that the reason we need so many residential care facilities is that people no longer help their own family members. Could that be the logic behind the new approach in Australia where carers are no longer part of the target group for support by the services that assist those for whom they care, but are instead directed to specialised support services designed to help them cope better and to seek employment ASAP?
One of the key characteristics of carers is that they share a personal relationship with the person they assist. Informal care has long been understood as an expression of the sense of long-term reciprocity, responsibility and familiarity that arises from a close familial, marital or intimate relationship. That’s how people start caring and why they keep going once specialised services come in to play their part.
Even when services are used, experience in Australia and overseas has consistently shown that family support remains strong in old age. This is reflected in data collected by the ABS over the past 30 years, that clearly demonstrates informal care and formal care are not mutually exclusive alternatives.
But carers will tell you today that they are no longer consulted when individuals they assist are assessed for the Home Care Package and for residential care. Nor are they included in the decision making about what is needed by the intended care recipient, the consumer.
Instead, they are referred to their own specialised support available through the online Carer Gateway. In the coming months it is planned to extend this with the launch of the Integrated Carer Support Programme (ICSP). The ICSP, we learn from the website, will provide ‘digital counselling services to help carers manage daily challenges, reduce stress and strain, and plan for the future’.
Carers are now eligible to access online peer support, online coaching resources that help them develop ‘simple techniques and strategies for goal-setting and future planning’. This is in addition to the educational resources intended to help carers build confidence and improve their wellbeing.
A second stage rollout is currently scheduled from September 2019. A network of ‘regional delivery partners’ will help carers access local services such as carer needs assessment and planning, support packages that focus on supporting participation in employment and education, coaching, counselling and peer support provided by phone and in-person, as well as information and advice; access to emergency crisis support; and assistance with navigating relevant, local services.
My goodness, what must the politicians and officials who designed such an approach think of carers?
Informal caregivers no longer seem to be recognised as an important source of support or as a team member to be consulted and included in decision making. Carers Australia has noted that carers in the ageing and disability care fields have become what is termed ‘collateral damage’ as policy has sought to develop markets based on the concept of consumer choice in Australia.
The concern no longer seems to be about recognising and supporting carers by providing assistance to those for whom they care. Instead, we have what is perhaps most kindly described as a therapeutic approach that focusses on a carer’s supposed deficits. A consequence of this is that it has left many carers feeling that they are now being excluded: stigmatised, patronised and targeted as just another problem that needs fixing.
Instead of being pathologised, carers must be recognised as a resource and acknowledged as team members to be consulted and included in decision making when issues of assessment and service delivery are considered. Skilled assessors, especially those seeking to elicit a clear expression of the consumer’s choice, need to learn to hear from both the care recipient and their carers. This needs to be very clearly put back into the objectives of the aged care legislation and the associated regulations.
An emphasis on individual consumer choice must not be used as a justification of the failure to recognise carers as important co-clients in aged and community care. Nor should it be the basis for excluding carers from direct engagement with the support services received by those who rely on care.
Michael Fine is honorary professor of sociology at Macquarie University.Do you have an idea for a story?
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