Bill Shorten (Maribyrnong, Australian Labor Party, Parliamentary Secretary for Disabilities and Children's Services) Share this | Hansard source

I rise today to speak on the Social Security Legislation Amendment (Improved Support for Carers) Bill 2009, which will make life better for one of the most invisible and marginalised groups in Australia today. I speak of parents who are living a life devoted to the care of a child, or in some cases children, with a severe or profound disability. These people perform irreplaceable and largely unsung work, work which comes at a financial and emotional cost that those who are not doing it are unable to understand.

This bill, led by the Minister for Families, Community Services and Indigenous Affairs, Jenny Macklin, will make long overdue changes to make it easier for these parents to get the financial support that they deserve and remove some of the worst features of the bureaucratic maze that confronts parents of children with disabilities.

For those who have a child diagnosed with a disability or whose child suffers an accident or illness, there is often a period similar to grief—a kind of mourning for what might have been. However, this period is joined with and followed by love and acceptance and the desire to do whatever it takes to make their child’s life as painless and as fulfilling as possible. These children are loved as other children are loved. But the sacrifices that are demanded of their parents and the pressures placed upon them are greater than those placed on other parents. Their lives are not their own. Each hour of sleep can be interrupted by the deeply-rooted instinct to help, and the vigilance and attention needs to be constant. Every day can bring a new crisis or new joy, and every change in their child’s situation—from starting school to leaving school—brings a new set of challenges. As well as dealing with their child’s condition, they deal with the community’s lack of understanding of disability and with the sense of internal exile that our nation places upon people with a disability or their carers in too many circumstances. They have to deal with the mix of unease and pity that is a common reaction from those who are strangers yet fellow members of the same community.

It is a common and slightly patronising reaction to describe the parents of children with disability or carers generally as saints or to say, ‘I don’t know how they do it.’ Whilst I understand that reaction, I wish to state that these parents—as they explained to me—are not saints. They are ordinary people with ordinary people’s flaws and limitations. But they are doing the DNA-hardwired mission of loving and caring for their loved one. They are carers because that is what they know they should be. A carer is a parent, a husband, a wife, a mother, a father, a brother, a sister. A carer is any one of us. Anyone in the disabilities sector is aware of the efforts involved in making sure children with disability get a fair go and also of the sad toll it can take upon families and marriages.

In general, carers are poorer simply because they have greater expenses and fewer opportunities to earn money. This is despite the fact that many parents with adult children are required to earn enough money for two lifetimes instead of one. For many, the task of caring for their child does not get easier as the child gets older. The gradual gaining of independence does not happen and the child remains dependent on an ageing parent or parents into their adulthood. The bill we are debating today will make it easier for parents who need and deserve our support to care for children with profound disabilities. The carers payment is designed for parents who are unable to work due to their responsibilities as a carer. It is a payment that is a recognition of the difficulties that they face and the unpaid work they do to support their child.

However, the system we inherited from the previous government was too harsh, too rigid and simply too unfair in its assessments. It used a narrow set of medical criteria which left many deserving carers without access to the payment. The plight of these carers was revealed by the Carer Payment (child) Review Taskforce, which received 4,000 submissions on the payment. In one of the most extreme cases, a child diagnosed with severe multiple disabilities likely to be life long—unable to sit or walk without support, unable to feed himself and suffering hearing loss—was found to be ineligible for the payment because he met only one of the three required criteria. In another case, the parents of a child who was deaf, blind and unable to use his hands or legs were denied access to the payment. Such judgments go against common sense and common humanity. They are a kick in the teeth for parents who are coping day to day.

At the heart of our changes will be a new, fairer and less restrictive assessment process based on the level of care required, and the level provided by the carer, rather than a strict medical definition of ‘profoundly disabled’. Instead of having to meet complex medical criteria, access to the carer payment (child) will depend on how much care is needed by the child. In another change, any parent who qualifies for a carer payment will also automatically qualify for the carer allowance, which is an income supplement paid to people who care for an adult or a child with a physical, intellectual or psychiatric disability. This will limit the amount of assessments families will need to get through in order to get the payments that they deserve.

In another reform, parents with a child in hospital will be eligible for the payment regardless of how long the child remains in hospital. This recognises a simple human truth—that having a child in hospital is not a holiday. Parents do not stop being carers when their children go to hospital and, in many cases, their workload and stress increases. Under our changes, parents will not be disadvantaged by sitting by a hospital bed and providing support for their sick children. The Rudd government has a strong record of support for carers, which has continued with the announcement of the rise in the carer payment in this year’s budget and the announcement of the $600 per year carer supplement.

I am proud that we have recognised the sacrifices that carers make. I do not pretend that the challenges for carers will cease with this legislation but I do believe that the work done by Minister Macklin—and, indeed, by the member for Canberra in her committee work, which has helped inform much of the debate about carers in the current parliament—recognises the efforts that carers make. Carers cop it, and cop it sweet, more than almost anyone in the Australian community. Somehow they cop it invisibly; unheralded and unsung. They are the ones we never see, or never see separately from their charge—the loved one who has become nearly always by accident, by an unplanned shaft of fate, their cause and reason for being. They get no medals or monuments.

People with disability in Australia and their carers do deserve a better go and I believe this bill, along with a range of other measures that the Rudd government is putting in place, is trying to remedy the longstanding disadvantage that people with disability and their carers have experienced in Australian society. The fact that carers get no medals or monuments is a fact of life, but if there was a George Cross that we could award them, they would get it. If there was an honorary Olympic gold medal for love beyond love, and beyond the call of duty, carers would get it. That is what we should also do, perhaps, along with this bill.

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