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Futures Planning for Older Carers PDF Print E-mail
Tuesday, 02 September 2008 10:22
A recent special study looking into how older carers of adults with a disability can plan for the future will be of vital interest to all working carers.
It tackles head-on the very uncomfortable and confronting issue of who will look after your loved one if you die.

The report was prepared by the Aged Services Learning and Research Centre (ASLaRC) of Southern Cross University with the NSW Department of Ageing, Disability and Home Care (DADHC).

Chief investigator of the study and director of ASLaRC, Professor Colleen Cartwright, said that the project had involved 10 families from Tweed, Murwillumbah, Ballina and Port Macquarie who were helped to plan for the future in a practical way.

“The family was helped to decide how they might respond if the carer suddenly became unable to look after the person with the disability,” said Professor Cartwright.

“Through interviews with the project coordinator and information sessions with service providers including solicitors and financial advisors, they became aware of options such as alternative accommodation, nominating people for substitute decision making and financial arrangements.

“They also completed a profile of the person with the disability, including their medical history, their likes and dislikes and other important personal details to help another person to step into the role of the carer at short notice in the case of an emergency.”

The project, entitled ‘Futures Planning for Older Carers of Adults with a Disability,’ has been such a success that DADHC has already confirmed funding for a second phase of the research.

The additional work will focus on training service providers to assist other families in this situation to complete their personal profiles and futures plans, so that a broader range of carers from all walks of life and from more locations across the state can be reached.

Professor Cartwright said that the planning helped carers to address some of their greatest fears.

“Improved health care means that people with disabilities are increasingly outliving their carers,” she said.

“Instead of feeling distressed about the future or simply trying not to think about it, the families we worked with said that they felt reassured that appropriate arrangements had been made in the case of a crisis.

“Carers felt more at ease about whatever may lie ahead and in some cases, it encouraged the people with the disability to become more independent.

“These kinds of plans provide essential support for our carers – and by caring for our carers we can care for everyone.”

Because the focus of the project was so intensely personal and confronting, i.e. the death or disability of the carer, some of the families at the initial stages of the project were not keen to be involved and did not want to face the difficulties that the project was addressing.

However, the concern of the parents/carers, about their person they care for, outweighed their distress and they realised that by participating in the process they were potentially making things easier for themselves and gaining peace of mind.

By taking this responsibility, the parents/carers were also taking the onus off other family members who might - willingly or otherwise - have to assume care of the person with the disability or high care needs without adequately preparing for that or knowing what resources were available to assist them.

The research team is also hopeful – that what is learnt from this project may be applied on a wider scale to lighten the burden of carers and provide some security for those for whom they care.
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