The hardest thing we have ever done - Palliative Care Australia

for a terminally ill family member. This ‘silo mentality’ means that CALD clients fall into the
notorious service ‘crevices’ as the core business of government focuses on ‘mainstreaming’. It
appears that core business allows only for the experience of one type of disadvantage, in this
case, either disability or CALD. Funding arrangements for services lack the contractual
obligations to ensure providers make services available in an accessible and equitable
manner. FECCA (2003) concluded that “our human services infrastructure is still learning to
come to grips with the challenges posed by diversity. CALD families and carers are generally
excluded from the policy development and service planning processes”.
At a general community level, education is needed to promote the social value of caring and
an awareness of the demands and impact of the caring role (Schofield et al, 1997b). In this
vein, Palliative Care Australia is organising National Palliative Care Week in May 2004 with
the theme ‘Caring for a person with a terminal illness’, and together with this National
Inquiry into the impact of caring, both strategies will help ensure carers gain greater
exposure and visibility in the community. In future editions, Palliative Care Australia could
consider including sections dedicated separately to carers in the Planning Guide (PCA, 2003)
and Standards for Palliative Care Provision (PCA, 1999c) to reinforce the important role
informal carers play in home palliative care and explain how they can have an impact on
formal staffing levels. The Carers Association of Australia (Briggs & Fisher, 2000) has
recommended developing an information strategy to ensure that the role of carers is better
understood and supported in the wider community and to promote recognition of the
contribution made by carers to Australian society. This could be achieved in partnership with
governments and other organisations.
36 THE HARDEST THING WE HAVE EVER DONE: The Social Impact of Caring for Terminally Ill People in Australia, 2004