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Wednesday, 27 May 2009
Page: 4592

Mrs MOYLAN (10:01 AM) —On Monday I had the opportunity to address the House for five minutes on the report on carers, Who cares …? I am pleased to have time to continue to address important issues which arose in the course of the inquiry. At the outset, I want to acknowledge the work of the chair of the committee, the member for Canberra, and all members of the committee for their commitment to improving the lives of carers. I particularly want to thank the secretariat and the secretary of the committee, Alison Clegg, and the assistant secretary, James Catchpole, who had to sift through the tsunami of submissions that came in as a result of this inquiry. They came in from all over the country.

None of us on that committee were left in any doubt that too many carers feel desperate, depressed and isolated. For the last year the House of Representatives Standing Committee on Family, Community, Housing and Youth has travelled to many parts of Australia, teleconferenced, and pored over the 1,300 submissions, mostly received from individual carers. We were both privileged and saddened to hear the heart-wrenching stories from carers who found the courage to share the day-to-day challenges of caring with members of the committee.

Each carer had a very personal story to tell, a very different story to tell. Some people are caring for ageing parents, others are caring for children, siblings or friends, and some—indeed, a surprising number—are children caring for parents. However, all are united in their common concerns that not enough is being done by government to support them. Indeed, I would add to that that not enough is being done by government or the community to support them because the sense of isolation that is felt by these people is indeed very real. They want to be recognised, valued and supported, and they deserve to be recognised, valued and supported.

The 50 recommendations made in our report Who cares …? reveals the essence of what carers want, and our response cannot finish there. Like the other members of the committee, I await the government’s response with the hope that these recommendations are given the weight they deserve. While time restrictions on this debate do not allow me to talk to each of the 50 recommendations, they can be loosely grouped along the following lines. First, a very common thread in the evidence before the committee was that carers want to be recognised and they want a value placed on the service that they give. I do not think that that is unrealistic or unfair in any sense. The second common point was that a single government entity, a single service entry point for carers, would make their lives so much less complicated. Many of the people who care for family members or friends who have illnesses and have conditions that are very complex require also very complex care needs. Very often carers are defeated by having to go through layers of bureaucracy in order to receive the care and the help that they need in their caring role.

The third area is program delivery improvement so that the short supply and uneven distribution of services, particularly in regional and remote areas and particularly recognising the needs of Indigenous people, can be addressed. The fourth area is adequacy of case management and care coordination. It would be perhaps a greater recognition of the complexity that confronts many carers to have a proper case management system and an appropriate care coordination approach. The fifth area is advocacy services. They need to be improved and expanded. It is not just those being cared for who require advocacy; very often those who are caring also require advocacy services.

A number of factors fall under the sixth area, legal issues. This includes the examination of privacy provisions, particularly for carers of people with mental health problems. One of the failings that seemed to be apparent in the evidence that came before us was that quite often the medical profession, particularly psychiatrists and sometimes psychologists, fail to keep the primary carer in the loop. Changing medications for some people with mental disability without advising a carer can place them in an extremely dangerous and life-threatening situation. These are people who, when their medications are altered, can become suicidal. This is a very serious matter and there are concerns that privacy provisions prevent psychiatrists and other mental health professionals from dealing with the person with the primary responsibility for the care of an individual with a mental illness. They are not taken into the management plan, and this does put the lives of people with mental illness at risk. It is something that should be addressed, I think, as a matter of urgency and priority.

The seventh area was the restructuring of financial support to reflect different levels of care: increase the base rate of carer payment, reduce disincentives for carers to earn and examine the adequacy of assistance for aids. It is a very costly business to care for some people in some circumstances. Particularly where they need wheelchairs, the cost is very high and the subsidy available to people to provide a wheelchair is very low in comparison. These are not the kinds of people who sometimes can be involved in full-time work earning the sort of money that would help them raise the capital to purchase a wheelchair or, indeed, adapt a motor vehicle or a home so that a person with a disability can live independently.

The eighth area was around workforce issues, including building capacity within the care sector and staff retention within that sector—again, a very important area that needs to be addressed. The ninth area was systems management, including reviewing Centrelink’s data capture and management system, so that carers do not fill out multiple forms, and training Centrelink staff to provide specialised care. The filling out of forms defeats many carers and they give up in the end. Often these cases are very sensitive. It would appear from evidence that was given that, no matter how hard Centrelink staff may try—and I acknowledge the work they do and the pressure they are often under—they are not given sufficient training to be able to offer the kind of specialised advice that carers frequently need.

As the need for care and the costs grow, I believe there is also a need to examine a national disability insurance scheme. A submission from MS Australia noted that, while more work is needed on the design of such a scheme:

A disability insurance scheme with a capacity to fund rehabilitation and lifetime care is a necessity for Australia’s health system from both a financing and service delivery perspective.

As I noted in the additional comments I made to the report, adequate funding for respite during working hours to enable carers to have greater workforce participation along with affordable, available day care and respite facilities is a necessity for working carers. Why is it in this country that there is an expectation that families with children will have access to affordable, high-quality childcare centres, and yet parents who are caring for children with profound disabilities find it difficult to get a placement in the small number of facilities that are available in order for them to be able to take their place in the workforce? No wonder they feel isolated, no wonder they feel undervalued, no wonder they feel desperate, because when they cannot access work, there is a whole flow-on effect. Try living on this carer payment. Try living on a disability pension. I challenge everyone in this House to think about just how difficult it is. And yet these people have no option sometimes but to stay at home and care because there is nowhere to put their child or the person who they care for. There is nowhere to place them during the day with appropriate care.

For this group of people, that also means it is almost impossible to have any superannuation savings. So in old age the carers become the poor and marginalised in our community because there simply is not any superannuation for them to draw on. They are totally at the mercy of the old age pension. Again, I ask everyone in this House to think about how difficult it is to live on that pension. I know that there are limits to what we can do, but we need to have a safety net. In many ways it is a nominal safety net, but nevertheless it provides a great deal of hardship for many people in this country.

For ageing carers, accommodation options are critical. Commonly these carers ask, ‘Who will look after my son or daughter if something happens to me, if I get sick or if I die?’ A dramatic increase in funding needs to be directed to this purpose, and I would beg the government to find, from the $6.4 billion social housing budget, money to support these parents in Australia who are continuing in their old age to care for a dependant. These dependants, who have serious disabilities, could be in their 50s with a parent aged anywhere from 65 through to 80-plus. These carers still do not know what is going to happen to the person they care for when they get sick or when they pass away. It is a great source of anxiety for this category of carer. I seek leave to table a document from such a parent, because I think it illuminates the frustration and the sheer anxiety that is caused from not addressing this particular issue.

Leave granted.

Mrs MOYLAN —The frustration in dealing with the complex system of assistance was explained to me in one submission from a carer who said:

Although services are available to carers, trying to access these services is akin to being in an ever increasing maze with illegible signposts so that the carer never really knows where to go or which direction to take.

The report asks the question: who cares? If we are to answer ‘we care’, then we need to confront the issues facing carers head on and match the rhetoric with reality and exercise our political will to ensure a better future for carers. The recommendations made in this report will make a difference to the lives of carers now and into the future, and inaction is simply unacceptable. The government response to this report must send an unequivocal message that we care.