Judi Moylan (Pearce, Liberal Party) Share this | Hansard source

I am very pleased to be associated with the Social Security Legislation Amendment (Improved Support for Carers) Bill 2009 in this place, because it will effectively provide financial support to carers of children with a disability or an illness who require high levels of care. While the carer payment (child) has been available for some time, the eligibility requirements have been prescriptive and inflexible, resulting in many carers missing out on this vitally needed assistance. By reformulating qualification so that it is based on the level of care needed by a child rather than based on medical criteria it is hoped that the application of this policy will be fairer and less perturbing for those families who carry a heavy load. It is a good step in the direction of caring for Australian carers and those who depend on them for quality of life.

The measure contained in this bill to expand the eligibility for the carer payment follows the report of the Carer Payment (Child) Review Taskforce and the recommendations made therein. The task force was set up by the Howard government in March 2007, having recognised the need for a review into the eligibility provisions for the payment. The report was handed down in February 2008 and recommended the immediate reassessment of qualifications for the carer payment. In May 2008, as part of last year’s budget, $293.6 million was set aside to facilitate these recommendations. It is very pleasing to see the high level of bipartisan support for this measure.

Caring for children is a joy that parents anticipate at the birth of a child and embrace for a lifetime. When children are sick, parents fret and worry and attend to them with love and devotion. But for many Australian families their children’s special needs are enduring and require that devotion 24 hours a day, seven days a week over an entire lifetime. The needs of these children and those of their carers are inextricably linked. In many cases, the parents cannot ever hope for their child to enjoy the milestones in life that most of us celebrate as our children go to adulthood and independence. Neither can they expect much relief from the unrelenting need for care, which eventually and inevitably takes its toll on the carer or carers.

While for many parents caring for a child with a disability there is a sense of personal growth and a deeper understanding of what is truly important in life, there can also be stress and anguish caused by a child’s illness or disability. It is often the case both for parents and for other family members. The repercussions are felt throughout every facet of family life. For parent carers, meeting the daily needs of their children is more than a full-time job. It often becomes a way of life.

This bill is also timely because the House of Representatives Standing Committee on Family, Community, Housing and Youth has just completed and released a report following an inquiry into better support for carers titled Who Cares? There will be an opportunity to discuss that report when it is tabled in the House on 25 May 2009, so I do not propose to do that on this occasion.

During the course of receiving evidence, we heard from witnesses that the coordination of care and the level of support are unsatisfactory. One of the most confronting aspects of the inquiry was the honest and caring accounts of carers of the financial, emotional and social isolation that they felt or feel. Financial stress that arises from not being able to engage in the workforce serves to further compound the feelings of social isolation and desperation that carers reported. The carer payment recognises that because of the needs of their children carers have a limited opportunity to work. It is not designed to compensate carers for the costs associated with caring or to replace the wages or salary foregone. The income support mirrors the payment of other social security pensions, which currently stand at $569.80 a fortnight for singles and $475.90 per fortnight for couples.

Even with these payments, more generous than some of the others, I ask everyone in this House to reflect on whether they could actually live on that sum of money. I remind the House that we have just seen an increase in that as a result of the budget announcement last night, and we seek increases in September 2009 to $594.59 and $479.99 respectively. I also remind the House that our former leader, the Hon. Brendan Nelson, the member for Bradfield, was largely responsible for seeing these changes come to fruition through his untiring and unwavering support for an increase in the pension rate.

Both inquiries have encountered deeply moving and very personal accounts of a system that failed and fails to provide an adequate safety net for all of those parents caring for children with severe disability or medical conditions requiring income support. Sometimes responses to community needs evolve over time. In this respect we have seen major changes to the way in which children with a profound disability are cared for in our communities. The end of institutional care was widely supported, but despite the expansion of more personal assistance the system has left parents to take full responsibility without satisfactory community based support. Notwithstanding some of the shortcomings in response to the plight of carers, positive steps were taken in 2006, when measures were introduced to extend the carer payment to carers of children with severe intellectual, psychiatric and behavioural disabilities such as autistic disorder, attention deficit hyperactivity disorder, learning disabilities and Asperger’s disorder. This saw a growth in the number of carers receiving the carer payment from 3,750 to around 7,000.

The key changes recommended by the task force and implemented in this legislation before the House today will further expand eligibility for the payment, making an additional 12,000 carers eligible to receive a higher level of support, and this is a very welcome measure. The payment is currently available to parents of profoundly disabled children under 16 who require constant care which is administered within the family home. These definitions are prescriptive and have little to do with the actual level of care a child may require. This systematic inflexibility will to some extent be corrected through this bill. The functional ability, behaviour and special care needs of the child will be considered to determine qualification for the carer payment. The expanded payment will also be available to parental carers where their child’s illness or disability is episodic or short term or where the child is in hospital. This means that, where parents need to provide care to a child with a condition that is unlikely to be ongoing but nevertheless necessitates constant care, they may then be eligible for the payment. For children in hospital the payment will undergo a 12-week review cycle which, it is hoped, will be responsive to the changing need of the child.

It is an utterly tragic and devastating circumstance when a child is diagnosed with a terminal illness. The doctor will no longer be required to provide an individual estimate of life expectancy for the child; the payment will be made according to the average life expectancy of a child in a similar position. It is expected that the system will be far more understanding of the sensitivities involved in these particular situations.

In addition, all parental carers who are eligible for the carer payment will also become automatically eligible for the carer allowance to ensure that the expenses associated with their child’s illness or disability do not place further financial strain on the family budget. For many carers, there has been uncertainty as to the difference between these payments. Unlike the carer payment, which is subject to an asset and income test, the carer’s allowance is not subject to that test. The current rate is $105.10 per fortnight. Additional measures are proposed to enable a less bureaucratic and more individualised administrative system that can better handle complex care arrangements, such as where separated parents each offer care or where there are multiple care recipients. All of these changes will no doubt be greatly welcomed by the community of carers, given the lengthy period over which they have advocated for this change.

Both the report of the carer payment (child) review and the recent inquiry of the Standing Committee on Family, Community, Housing and Youth not surprisingly identified financial hardships, the variability of care arrangements, limited employability, transition from child to adult care and, above all, the sheer complexity of accessing support as key as issues for them as carers. For me, this is driven home in a very personal way, because I have a family who is attached to me through the Politician Adoption Scheme in Western Australia. The mother has a profoundly disabled daughter and a son who has some learning difficulties. I asked her about the level of assistance she gets. She said that she just cannot go through the trauma of filling out endless forms to get a very small amount of money. This is not untypical. We heard much evidence in our inquiry of parents who both found this demeaning and felt defeated by the sheer complexity.

As I said, all of these changes will be greatly welcomed. Both the report on the carer payment and the committee report highlighted the difficulties. As I said, one of those difficulties was the lack of or limited employability. Much more needs to be done to address the systemic problems and, in part, encourage flexible working arrangements so that carers are able to also participate in the workforce—not just for financial gain but also as an important part of self-identity and of overcoming the social exclusion that many carers feel in their community. All parents would associate with the need for some occasional respite, but for parent carers who are caring for profoundly disabled children this need is greatly amplified. Without adequate care for respite, carers have little opportunity to engage in community activities, to spend time with their other children or to spend time with their partner. We know that caring for profoundly disabled children often has a high toll and can lead to relationship breakdowns.

The parliament, therefore, must continue to work to address the physical, financial, social and psychological impact of caring. Addressing these needs in a holistic manner is vital to caring for carers and is in the interests of the children that they care for. Clearly there is still considerable work that needs to be done. The needs are complex and they are individual. As a result, we desperately need a system that is flexible and coordinated. It became apparent to me in the course of our inquiry that for too long the welfare of carers has been compartmentalised and departmentalised, with carers finding themselves in the middle of bureaucratic maze. For parental carers, dealing with a complex system of assistance is surely the last thing they need. We need a system for carers that is adequately funded, that is responsive to the changing needs of individuals and that offers a one-stop-shop service. It is only through a whole-of-government approach that this can be achieved.

The passage of this legislation will remove one layer of complexity but, to achieve best practice in service delivery, a greater emphasis on training and awareness of the complex needs of carers and those they care for must be central to government policy. An education and awareness program needs to be extended to healthcare services and other external service providers so that carers can be directed to appropriate support services in the first instance. I understand Centrelink is trialling specialised officers to assist those on income support and similar payments and that staff are actively looking for ways to better respond to issues that have been raised by carers. I applaud and support the work that Centrelink people are doing and I sincerely hope that Centrelink staff are properly and adequately supported and funded by the government so as to achieve the high level of support our nation’s carers deserve.

This bill addresses the financial needs of parental carers that have not previously been eligible for the carer payment (child) and, by extending the qualification to these families, the parliament is not just recognising the contribution and sacrifices that carers make but also recognising that a flexible system is essential for caring for our carers. This is indeed a promising first step but, as I said, the parliament must accept that considerable ongoing work is needed to fully address the complex needs of carers, and the cared for, throughout our society. The next step will be to fully examine the recommendations of the report into better support for carers titled Who cares…? and, as a matter of priority, implement those recommendations. I can only hope that this next step will not take another 14 months to implement. I look forward to speaking further to that report when it is tabled and debated in this place during the next sitting week. In the meantime, I am very pleased to join with colleagues on both sides of the House in fully supporting carers through the passage of this bill.

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