Joanna Gash (Gilmore, Liberal Party) Share this | Hansard source

May I commence by firstly commending the senators who participated in the committee to review this important and timely legislation. I would also like to acknowledge and thank the organisations and individuals who contributed a submission. Whilst these are most welcome, I would have liked to have seen a better opportunity offered to individuals to tell their own unique story because I suspect that what they would have said in their own right would have been far more telling and passionate. Perhaps in doing so we may all have gained a greater understanding of the torment and stress that many carers face each day. Of course, I welcome the legislation. Anything that improves the lot of this very dedicated group of people, no matter how small, has to be welcomed. There is always more that can be done and that is also true. The Australian, in its edition of 7 May, said:

However, in looking for new policy ideas from among the many heartfelt submissions, it is essential to seek sustainable long-term solutions; to distinguish between symptoms and causes of the dysfunction in the present system.

It is therefore disappointing that the latest inquiry has chosen to weight its recommendations towards short-term adjustments and amendments to the existing policy framework.

When Australian governments took the enlightened step of closing the Dickensian institutions in which people with disabilities had been locked away, they failed to design, let alone establish, a modern support system that was sufficiently comprehensive and forward thinking.

The minority report by the Greens also suggest this, and I have no dispute with their view, except to say that any government of the day works within impositions, often beyond their control. What needs to be recognised, though, is the common will to help those who selflessly help others. Perhaps this bill should be viewed as an incremental approach towards what is probably an unachievable ambition where everyone is satisfied with the status quo.

No-one wants to see someone else in such a state of servitude that it borders on repression. A carer’s role should be more dignified. Yet, over the years, I have constantly heard very sad tales of individuals virtually giving up their life to care for someone else.  I have the deepest admiration for carers of all ages but, until I walk in their shoes, I will never know the extent of what they are feeling. It is difficult to appreciate what should be described as the hardest role for carers as though there is some sort of hierarchy of pain. To my mind, looking after someone near and dear to you with a terminal disease would be mentally excruciating but, then again, coping with someone with the irrationality from a mental disease would also be taxing on the soul.

I have had some experience with working with grandparents who have taken over the care of their children’s children. Whilst some reforms have been introduced over recent years I can well remember some grandparents coming to me originally in dire straights. They had assumed responsibility for their daughter’s children. Their daughter was a drug addict and, for all intents and purposes, had abandoned her children. The grandparents were both pensioners and, because they were not recognised as the legal custodians, they had to care not only for themselves but also for the children in their care from their meagre pension. The stress of stretching funds was bad enough but not as stressful as not being able to give the children the things they needed. The children—children being children—had no idea of the strain on the grandparents, who stayed outwardly loving and considerate. It was a huge burden at such a late stage in their lives. There was no respite for them, no break from the relentless daily grind. Happily, things are improving but it is still not what you and I would consider an ideal situation, but what can you do?

Politicians are inclined to argue that any largesse from the government comes from the taxpayer. How far can you ask the taxpayer to subsidise another person?  But let me say this: carers save the government money. If no-one voluntarily took on the responsibility of caring, who would look after our infirmed? If suddenly all our carers said: ‘No more,’ what would the government do?  It is a measure of our society as to how we care for each other. Are we a compassionate society? Are we a caring society? Have we evolved to a point where we can shoulder the responsibility of supporting those least able to do so?

The fact that this legislation is being debated today raises some doubts as to our own beliefs. But, getting back to the point I want to make—how much does it cost for a professional full-time carer? And contrast that with what we are paying a voluntary carer. I think you will find there is a very huge gap. I understand that there are occasions where residential care has been rejected because the aged parents want to stay home—understandably so, but it is their children who have to pick up the slack. The values of their children mean they will try to accommodate their wishes as best they can, even though that will impose a huge impost on their personal lives.

This legislation, however, is targeted at the carers of children aged under 16 years with a severe disability, physical or mental. I know of quite a few people in that category, and I do not begrudge them one iota—not even for a minute. I can only admire their tenacity, their total commitment and their endless patience. No two situations are the same, no two carers are the same and no two charges are the same. All come from a diversity of lifestyles and circumstances and all will deal with the situation in their own way. Despite the strength of their character, and their motivation, everyone has an end point. It is our responsibility to ensure that we contribute to easing some of the burdens that carers face. We need to assist in ensuring they do not burn out and then themselves become needy cases. And it is not necessarily a family member who may rise to the occasion. Indeed, I know of many carers who are not a family member but, through their heightened personal values, and a sense of compassion, turn their backs on living  their own lives to help another less fortunate individual. These people have my undying admiration. I doubt whether I could do the job—but, I suppose that, until I am called upon, I will never know.

I have no argument with the provisions of this bill—they value add to the current situation. But the bill should not signal the end of the matter. I would join in the sentiment expressed by Greens Senator Rachel Siewert, who seeks to amend this bill. What she is seeking is essentially a more flexible approach, and I cannot agree more. As I said, every situation will be unique, and I feel that some flexibility needs to be built in, to address each case on its merits. In fact, that was a matter identified by the carer payment review task force, which said that the system was overly complex and restrictive. The ‘cookie cutter’ approach might be all well for a dispassionate bureaucracy, but not for the people at the coal face—and certainly not for a community that likes to see itself as an advanced society. But I do believe the provisions are a step in the right direction.

I would like to touch on a contributory comment by Carers Australia, quoted in the committee report, in relation to aspects of the psychological impact of being a carer. As I said earlier, caring for someone with extreme disabilities is very stressful, and we must be conscious that in some individuals there will be an emotional price to pay. It is a matter of caring about the carer. So I would have liked to see some provision whereby carers had access to psychological support in times of dire need. This has to be coupled with reasonable access to respite services, and it may not necessarily be addressed through a direct payment of benefits. Rather, there needs to be provided a system of support services to alleviate the psychological pressures that will inevitably arise during the term of care. Alzheimers Australia, in their report released on 5 May this year, described an alarming toll of caring for a loved one. More than 40 per cent of informal carers reported high levels of stress, 65 per cent missed work as a result of their duties and 50 per cent reported a negative impact on their lifestyle. Alzheimers Australia are also calling for improved access to long-day respite care and more flexible workplace conditions for carers, along with training and support.

It is interesting to learn that, in the United Kingdom, the National Carers Strategy, which was published in June 2008, included £265 million of new funding, mainly for more breaks for carers, but unfortunately did not address the financial hardship faced by many carers. According to Carers United Kingdom, the government has accepted that Carer’s Allowance is not fit for its purpose, and has set out its intention to put in place measures by 2018 so that carers will not be forced into financial hardship by their caring role.

It needs to be remembered that carers, impoverished as they are, have to confront the day-to-day expenses of life, on top of their other worries. Like every other member of the House, I have people who, without the burden of caring for an incapacitated person, come into the office every day, telling me how tough things are and the worry of getting through each day; yet carers have that and more. These people definitely need a break. I am glad that we are taking steps to ease some of these pressures, but it is certainly not enough.

My colleague Annette Ellis, the member for Canberra, was reported on the ABC as saying:

… the system is in ‘crisis’ and many carers are under serious financial stress because payments are too low.

I could not agree more and I would hope that more can and will be done. In the policy we took to the 2007 election we on this side of the House said that the coalition recognised the vital role that carers play in our society and the tremendous financial and emotional burden they carry. We said that the vital caring responsibilities of Australia’s carers mean that they miss out on the opportunities offered by a strong economy and labour market. This may mean that they face difficulty in saving for regular household expenses. We committed to ensuring that they are able to maintain the lifestyle they deserve. That is why I support any additional benefits that this legislation brings. There is a government of a different colour in Australia today, and it is solely its responsibility to add credence to its word. With the deterioration in the economy, the situation for carers has become worse, and this government should do all it can to ensure that those least able to protect themselves will be protected.

It is timely to revisit last year, when this government decided to cut the annual bonus payments to carers. After the uproar, they recanted, but that was a political decision, not a humanitarian one. The 2007 ALP election policy is awash with fuzzy, vague statements. It is quite an extensive policy statement, yet there is no time line. I suppose it is open to semantic interpretation. Given the rather derogatory statements directed at the coalition government contained in the statement, I will be watching with some interest to tick off the boxes as the government takes the disabled and their carers to the promised nirvana.

The issue of providing adequate and functional support to carers and their charges is not restricted to Australia. Many of the advanced economies of the world are struggling with the challenge. According to the United States National Family Caregivers Association, more than 50 million people provide care for a chronically ill, disabled or aged family member or friend during any given year. In the United Kingdom that figure is six million. I hark back to the Australian, which I quoted in my opening remarks. The article’s opening line was:

Australia’s disability support system is inequitable, fractured, under-resourced and slowly collapsing under the weight of its own inadequacies, while sub-optimally consuming billions of dollars of taxpayers’ money each year.

That is after 18 months of the alleged new and improved neoconservative government. I think that describes adequately what needs to be addressed. This bill is helpful but inadequate. But we can use it as a starting point to help those who help others who cannot help themselves. The challenge for the government is to respond to the urgency that they have identified. If indeed it is urgent then it should not be sacrificed on the altar of economic expediency. But after the experience of seeing the attempted slashing of the annual carers bonus last year it is difficult to believe that this promise will be kept in this term, especially in an environment of a severely deteriorating national economy under a government that has converted the legacy of a $21 billion surplus into potentially a $200 billion millstone.

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