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Opening of the National Conference of the Carers Association of Australia, Canberra, Thursday, 2 April 1998: address on the occasion of.



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ADDRESS BY SIR WILLIAM DEANE

GOVERNOR-GENERAL OF THE COMMONWEALTH OF AUSTRALIA

ON THE OCCASION OF THE OPENING OF THE

NATIONAL CONFERENCE OF THE CARERS ASSOCIATION OF AUSTRALIA

CANBERRA

THURSDAY. 2 APRIL 1998

It is a great pleasure for me to be with you this morning and, as Patron o f the Carers Association o f Australia, to open this National Conference with its important theme o f “ Community, State or Family - A Question o f Responsibility” .

That theme touches on a great many issues o f significance to our society: to our values, to our sense o f social cohesion, to our capacity to care for some o f the most vulnerable members o f the community - the sick, the disabled, the aged - and our ability to manage in a fair and equitable way the forces o f economic, social and demographic change that are transforming so many aspects o f contemporary life.

A growing population but an ageing population , a proportionately smaller tax base ... the movement by more and more women into the workforce, especially to part­ time employment , . changing family structures, and the substantial increase in the number o f sole parent families ... constantly rising health costs and the shift away from institutional care towards a greater emphasis on community-based and home care. The impact o f these, and many other changes, upon your members, upon those hundreds o f thousands o f men and women - and often children - who care for aged, sick or disabled relatives at home, form not only the substance o f this Conference but in fact present all o f us in the community with a significant challenge as we move towards a new century and a new millennium How, indeed, should the responsibilities be shared?

In a sense, o f course, the question is not a new one. From time immemorial the family has been the primary caregiver both in health and in sickness, to children, to parents, to other relations.

What is new, I think, is our realisation o f the extent o f the contribution being made by what the Carers Association has called the “ invisible army” o f people caring for others at home throughout Australia. That, and a more sophisticated understanding o f the demands placed upon - and the continuing needs o f - carers themselves.

In 1994 the Australian Bureau o f Statistics estimated there were about 500,000 people providing care to someone at home who has a disability or a chronic illness or who is frail aged. They are principal carers That is to say, they provide that care for at least

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35 hours a week - and as you would know, it is generally much longer: often 24 hours a day, every day o f the week, unless some respite care can be arranged

Indeed, the Australian Institute o f Health and Welfare noted in Australia's Welfare 1997, that the household is by far the dominant sector in providing welfare services. In 1995-96, services estimated at over $16 billion were provided to sick or disabled family members mostly without any form o f monetary payment It is also true that just on 30,000 people currently receive the Carer Payment, and some 43,500 people receive the modest Domiciliary Nursing Care Benefit. Nevertheless, o f the total value o f all welfare services provided to our society, the Institute estimates over 60% comes from the household, by carers who volunteer their time, their compassion, their labour

And labour is the word for it. Caring is hard work. Carers feed, bath, dress, toilet, drive, medicate, supervise, comfort and nurse some o f the most vulnerable people in our community: adults and children who, through disability, age or illness, are unable to care for themselves.

I have already observed that, as our realisation o f the extent o f household care giving has grown, so too has our understanding o f the need for the carer for some respite from the responsibilities involved. As one respondent to your 1994 survey put it, “ Community care should be such that the carer is not driven to despair or depression” . Most o f you here today would accept that those words are not too strong.

The 1994 survey by the ABS on Caring in Families provides us with some enlightening statistics. Twenty percent o f those caring for a disabled child have been doing so for more than two decades - that is, the child is now an adult - and in many cases the parent is now aged over 65. Principal carers have a lower labour force participation rate than the population as a whole Some 37% o f women who worked before taking on the carer’ s role have given up paid employment - indeed, around three-quarters o f all principal carers are women. Over half the principal carers have a weekly income o f less than $200. One in six cannot go out during the day unless accompanied by the person they are caring for. One in five say their sleep is interrupted to the extent that daily activities are affected. One in three find their relationships with other family members under strain. Put simply, a very large proportion o f carers are themselves among the most disadvantaged and vulnerable members o f our community. Yet they devote so much o f themselves and their lives to helping and caring for others.

This sense o f family stress, o f isolation, o f loneliness, o f financial hardship o f dependence, w ill be familiar to most members o f the Carers Association. They are issues that have often been mentioned to Helen and me as we have visited and spoken to many individual welfare volunteers and their organisations over the 2 years since taking up this job Their need for adequate support, respite and ancillary services from the community at

large seems to us to be o f the first importance, since the bulk o f welfare in Australia for the aged, sick and disabled is provided without payment by carers in the home

The challenges facing us w ill become more acute as the sorts o f changes I mentioned at the beginning o f these comments pick up pace in the years ahead. For example, the shift away from institutional care towards a greater emphasis on hostel, community and home-based care means that demands upon family members are likely to become more not less.

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Now, the concept o f “ ageing in place” is an important one -ordinarily a very compassionate one - and certainly one that would seem inevitable as the population as a whole ages over the next half-century But the corollary o f that concept, i f it is to be a truly acceptable and fair one, is that elderly people looking after themselves at home, or those in the household caring for disabled or frail aged relatives, must have access to the necessary community support services - practical, health, financial, counselling, welfare, transport and respite services.

No doubt we can take an optimistic view and assert that the older citizens o f the future w ill generally stay healthier for longer. Nevertheless, the fact remains that the longer people live the more likely they are to require significant care in very old age And, increasingly in that context, the critical question is: Cared for by whom? In seeking to answer that question, one must be conscious o f the increasing workforce participation rates by women, especially by older women who currently comprise the majority o f carers. Moreover, most projections suggest that trend w ill continue into the future. While it is true that much o f this new employment is in the part-time workforce, I note that in some countries welfare analysts are starting to refer to a “ carers gap” .

Ladies and gentlemen, these are major challenges for us all How we respond to them w ill affect the future quality o f our society. At this Conference you w ill be discussing the importance o f change at a number o f levels: within families, in terms o f sharing the load o f unpaid care more equitably; within workplaces, in terms o f enabling all who wish to participate in employment, within the community, in terms o f ensuring that those who provide care for others at home are given the support and services they require.

There is the need for many o f us to change our attitudes towards the aged and towards people with a disability. While the elderly no longer automatically go into nursing homes, carers know just how isolated and invisible older people can feel in our society and how lonely they can be - and the same is true, I know, for those who suffer from - or who care for people with - a disability, especially an intellectual disability. And these are, I believe, questions and problems o f profound national significance. For surely, as I seek to stress as often as possible, the ultimate test o f our worth as a truly democratic nation is how we treat our most disadvantaged and vulnerable.

All o f us w ill, at some time in our lives, either care for someone or be cared for. Let me therefore take this opportunity to express my warmest good wishes to the Carers Association o f Australia, to its member organisations, and through them to the tens o f thousands o f individual carers with whom the Carers Association is in direct or indirect contact around the country - indeed to all, whether known to you or not, who volunteer their time and effort to care for sick, disabled or aged relatives and other loved ones within the household. Beyond monetary terms they contribute immeasurably to the sense o f social justice and decency that is required by every caring community. Through such vehicles as the National Carer Resource Centre, the net work o f Carer Support Groups, Carers Week each October, and these annual conferences, the Association ensures that the voices, the interests, the needs and the thanks we owe Australia’s “ invisible army” o f half a million carers are brought to national attention

I thank you for the invitation to join you today. The topics you are here to discuss impinge upon the day-to-day realities o f a great many Australian men, women and

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children I wish you every success in your deliberations, and with much pleasure I declare open the National Conference o f the Carers Association o f Australia, “ Community, State o f Family - A Question o f Responsibility” .