Thursday, 21 October 2010
Carer Recognition Bill 2010
Can I begin by acknowledging my colleagues the member for Paterson and the member for Lyons for their long-term interest and their very sincere comments in regard to the introduction of the Statement for Australia’s Carers. I have appreciated personally also their involvement in the Parliamentary Diabetes Support Group.
I have to declare an interest today. I have spoken many times in this chamber and in the House about the need for us to better recognise carers in Australia and the need for ongoing work in this parliament in that regard. But recently I was asked by Carers Western Australia to be a co-patron and I accepted with great joy. It is a great honour to be able to help to represent the interests of carers not only in Australia but in Western Australia particularly.
I acknowledge that it is Carers Week and it is a great thing that we are now able to acknowledge carers in this way through this Statement for Australia’s Carers at a time when there is a great focus on carers nationally.
The Australian Bureau of Statistics estimates that there are 2.6 million carers in Australia, providing assistance to the disabled, the frail and the chronically ill. Carers are mostly family members, close friends or relatives who through circumstances not necessarily of their choosing have become a primary carer. For many it is a shock to deal with the grief that frequently accompanies the pain and the suffering of somebody that they are close to or the loss of companionship of a close friend, a relative or a spouse, or the realisation that their child will never have the same chance to fully develop and take their place in the broader community that most children have.
As deputy chair of the House Standing Community on Family, Community, Housing and Youth in the last parliament which produced the Who Cares …? report, I heard firsthand along with my colleagues the experience of carers in these and many other circumstances. None of us on that committee were left in any doubt that too many carers feel desperate, depressed and isolated.
For a year the secretariat and the members of that committee pored over 1,300 community submissions, mostly from individual carers. It was impossible not to be moved, sometimes to tears, by the heart-rending stories from people who found the courage to come here and share their day-to-day challenges as carers.
One of the many recommendations from that report was that carers be formally recognised by the Commonwealth. So many carers drop out of mainstream activities, out of the workplace and, as they grapple with the day-to-day needs of the person dependent on them, they feel isolated, unrecognised. It is a very lonely road.
We have estimated that Australian carers give upwards, if you want to quantify it in dollar terms, of $30 billion a year. That is the value of the care that is given, yet this contribution often goes unnoticed in the wider community. This statement today gives that long awaited recognition to carers, providing the basis from which to build greater support in society.
The vision is to have a nationally consistent framework for carer recognition, an architecture from which a national strategy to assist carers can be born. Such a strategy is necessary as current assistance often overlooks the human and the emotional needs of carers, adding to the confusion and the turmoil that frequently come with the shock of such a dramatic life change that carers necessarily confront. As Anne-Marie MacArthur, who cares for her elderly mother, noted in her submission:
Although services are available to carers, trying to access those services is akin to being in an ever increasing maze with illegible signposts so that the carer never really knows where to go or in which direction to take. To add to this mix the carer—
in this case herself—
is physically exhausted and emotionally spent. Not a happy combination when trying to understand bureaucratic-speak.
As the evidence unfolded, it became increasingly clear that there is simply not enough assistance to go around. Time and time again, the committee heard stories from carers who were under extreme financial or emotional stress. It is intolerable that those who give up so much to care for others should be subject to such pressures.
Women are disproportionately affected as they make up 71 per cent of primary carers with the median age of primary carers being 52 years. This brings me to a part of the statement which particularly interests me—that is, part 2, Children and Young People. There are increasing numbers of children taking on the primary caring role, often of a parent. It impacts on their education, it affects their capacity to get a job in the paid workforce and it often robs them of their childhood. In evidence to the committee, we saw incredible maturity in these young people and a great sense of pride in their capacity; nevertheless, as the member for Lyons quite rightly pointed out, they need extra support to be able to fulfil their caring role and to make sure they can take their place in the wider world.
Workforce participation and the flow-on financial impacts are critical matters for carers, particularly children and young people, and women who we see are disproportionately represented in the number of people who take social security benefits such as the old age pension. There is an expectation that families with children will have access to affordable high-quality childcare centres, yet parents who are caring for children with profound disability find it very difficult to get a placement in the small number of specialised facilities that are available. This perhaps has a disproportionate impact on women being able to take their place in the paid workforce at some stage and save for their retirement. It is another reason we are seeing disproportionate numbers of women ending up on the old age pension.
Similar accounts can be heard in relation to respite care or day-care facilities for older children and adults, who may not be able to be left at home alone. Cost, suitability and availability are all issues for primary carers who want to continue to work in the paid workforce or who just simply need some respite from the 24-hour a day, seven day a week job that they are often committed to for a lifetime. As I said in my speech to the House of Representatives when the report was presented:
… no wonder carers feel undervalued, no wonder they feel desperate, because when they cannot access work there is a whole flow-on effect. Try living on a carer payment. Try living on a disability pension. I challenge everyone in this House to think about just how difficult it is. And yet—
have no option sometimes but to stay home and care because there is nowhere to put the person who they care for—
so that they can work. With little paid work it is almost impossible to have superannuation savings so, as I said, in older age this has a major impact on all carers. As it stands, 44 per cent of primary carers are living in low-income households. The range and demand of caring roles varies considerably, but one group I continue to be deeply concerned about—and I spoke in the House about them on Monday and I will not recanvass those issues—is the ageing carers and more particularly their dependants. Twenty-four per cent of carers are over the age of 65 and of those more than 15,000 are caring for severely or profoundly disabled individuals, according to the latest ABS data from 2003. The testimony of Colin West, whose son Richard suffers from cerebral palsy, to the Senate inquiry on special disability trusts typifies the situation of many older carers. He submitted to the inquiry:
We have never applied for or received a carer’s allowance, nor, other than his home loan and a small amount of input from the Disability Services Commission, received monetary or other assistance from any Government body.
We are prepared to support our son as long as it takes and as long as we are around. What really frightens us is that we do not know who will take care of him when we are gone. His siblings, whilst very supportive, have their own families to care for and could not offer the necessary time required.
The government already provides a vehicle to assist but its practical operation is imperfect, in fact some would say almost impossible. In 2006, the Howard government created special disability trusts where families can make provision for the care and accommodation needs for severely disabled dependants in trust. With little or no impact on social security benefits the concept has much potential, but drawbacks have been identified and need to be urgently rectified by the government so that more families can benefit from this trust arrangement.
Carers should be able to look to the future with at least some degree of certainty. A dramatic increase in funding is required so that accommodation is available to those that need it the most. Also, as the need for care and associated costs grow, I believe we must examine a national disability insurance scheme. I made an addendum to the carers report on this particular matter. Whilst there is much work needed on the design of a particular scheme, as a submission from MS Australia to the carer inquiry noted:
A disability insurance scheme with a capacity to fund rehabilitation and a lifetime of care is a necessity for Australia’s health system from both a financing and a service delivery perspective.
Such a system would have a profound impact on carers and go far in alleviating the low workforce participation rate, especially amongst women, and help redress the cumulative negative flow-on effects. A national disability insurance scheme would also help to relieve the burden on the growing number of young carers in Australia. Surprisingly, 13 per cent of primary carers are aged 15 to 34 years. In raw numbers that is estimated to be 40,000 young carers in Western Australia alone. These young Australians are compromising their studies, work and social lives to provide family care. One example is Alishya Purss, who cares for her father who has depression and frontal lobe brain damage. In her submission to the inquiry she noted:
My friends would not understand what I do, as not every 19 year old does what I do. Socially, it is hard to go out on weekends and I used to be an active volunteer in my region in regards to Red Shield appeals, Salvation Army door knock appeals and blood donations. I can no longer contribute to society as I could before.
While the evidence overwhelmingly shows that the parliament must continue to work to address the physical, financial, social and psychological impact of caring, addressing these needs in a holistic manner is vital and is in the interests of the people being cared for as well. There is still considerable work that needs to be done. The needs are as complex as they are individual. As a result, we need a system that is flexible and coordinated. It became apparent to me in the course of the inquiry that for too long the welfare of carers has been compartmentalised and departmentalised, with carers finding themselves in the middle of a bureaucratic maze. For all carers, dealing with a complex system is the last thing they need.
In conclusion, we will only get a solution through a whole-of-government approach. The carers report asked the question, ‘Who cares?’ If we as decision makers are to answer, ‘We care,’ then we need to be more responsive, match rhetoric with reality and exercise our collective and political will. (Time expired)