Jill Hall (Shortland, Australian Labor Party) Share this | Hansard source

Before going to the actual substance of the Social Security Legislation Amendment (Improved Support for Carers) Bill 2009, I would like to start where the member for Pearce finished by referring to the fine report of the House of Representatives Standing Committee on Family, Community, Housing and Youth entitled Who cares...? and the recommendations that were brought down by that committee. I acknowledge the role that the member for Pearce, as the deputy chair of the committee, played in that report and I join with her in emphasising how important it is that these recommendations become more than just recommendations and are reflected in legislation.

There is no member in this parliament that has not been faced with the plight that carers have to contend with each and every day. I am very pleased that there is bipartisan support for this legislation. In saying that, I did not for a moment doubt that there would not be bipartisan support. No matter what our political philosophy is and no matter what our political disagreements may be, when it comes to an issue where we are providing support to some of the most vulnerable people—some of the people in our communities and electorates who need support more than anyone else—it is important we all join together, support legislation like this and call for recommendations like those in this report to be implemented. Like the member for Pearce, I will be speaking when the report is tabled and brought on for debate here in the Main Committee.

This legislation provides part of the Commonwealth government’s response to the recommendations of the carer payment review task force, and it gives effect to a number of measures aimed at improving assistance to carers of children with profound disabilities. These measures take effect from 1 July this year. The qualification criteria and assessment processes for carer payment for care provided to children with a disability or a medical condition will be changed to provide a fairer, more equitable process based on the level of care required rather than the rigid medical criteria that are currently used. I will talk a little bit more about that in a moment.

A person who qualifies for carer payment under the new provisions in this bill will automatically qualify for a carer allowance, and that removes the problem of having to fill out two sets of forms and relieves a little bit of the pressure that is on those carers whose every minute of every waking hour is spent caring for their children. A parent of a child who is in hospital and who receives a carer allowance will continue to receive that allowance for a limited time. This will remove the current limit on the number of days in each calendar year that can be paid while a child is in hospital. The limit sometimes leads to the loss of the carer payment or carer allowance.

Since I have been in this parliament, I have been approached by numerous parents of children who have a disability, and I can say that I have always been moved by their plight. I have always been convinced that, as a government and as a society, we should be providing more support to these parents. In doing so, we are providing more support to their children. When a person becomes a parent, they have their beautiful little baby that they have dreamed about for nine months, or maybe for a lesser period of time where a child has a disability. They have got plans and aspirations for the child, and then they find that the child has a disability, or they may find a little further down the track that the child has a disability. All of a sudden, they need to re-evaluate those plans. They need to re-evaluate their entire lives. I think that, as members of this parliament, we need to be very mindful of the impact that that has on a person’s life and of the years of dedication that those parents give to their children.

As well as meeting with individual parents of children with disabilities, in my time as a member of parliament many lobby groups for parents with children with disabilities have come to this parliament to ask for more support. There is a Western Australian organisation that has for its theme ‘walk a mile in my shoes’ and they have lobbied very strongly for greater support for parents of children with disabilities. I am sure that they will be pleased that this small step has been taken towards helping them.

One occasion that had the biggest impact on me, as a member of parliament, was back in 2002. I visited Camp Breakaway in the Shortland electorate, where parents of children with disabilities from the Central Coast had gathered. These children had rare and serious genetic disorders. They were severely disabled children with very high support needs and very high care needs. I had previously visited the mother of one of the children at her home. She had a little girl called Tori. Tori had developed a type of muscular dystrophy that meant that she moved from being a normal child with normal muscle tone to a child who was unable to breathe without assistance. She had what was called spinal muscular atrophy. She had very limited movement. Karen, her mother, had a little bit—a very little bit—of respite and she averaged about three hours sleep a night. She was under enormous pressure and there was an enormous draw upon her time, but she did it with great dedication and great love and did not question for a moment. She organised for me to go along to Camp Breakaway to meet with the other parents.

There I met Sonya, who had four children. Her son Alex had a disability. Alex had had to have a ‘trachie’ inserted so he could breathe, and her situation was exacerbated because her husband was a quadriplegic. But she was happy to do everything that she could. The reason I want to share with the House today Sonya’s story is that she had applied for disability payment for young Alex and had been rejected. She reapplied and was rejected again. This child was severely disabled. She said to me that she got so sick of completing the forms, submitting them to Centrelink and being rejected that she finally took Alex into the Centrelink office. The staff there were so overwhelmed by the level of disability of this young boy that she was granted carer allowance for Alex. I see this relates directly to the legislation before us today. This legislation makes this simpler. This legislation removes the arbitrary nature of having to prove the level of disability. It is much more flexible. It will get away from those rigid criteria that have for years prevented parents of children who suffer from autism or other profound disabilities being granted carer allowance or carer payment.

I pick on autism because I have spent many hours with constituents within my electorate working through these rigid criteria, having the applications rejected and then quite often going to the Social Security Appeals Tribunal and helping the parents through that. These are parents who spend each and every waking hour of their day caring for their children. They have dedicated their lives to their children, and their lives have been made even harder by the rigid nature of legislation that has been in place. We on this side of the House—and, I would have to say, those on the other side of the House too—recognise that it has been very difficult for carers.

In this budget, we particularly acknowledge with the payments that we have made to them the fact that carers have a very hard job. Some of the real answers lie in this report here. I put to the House that if these dedicated parents and carers within our community were not prepared to give all of their life to their children then governments throughout Australia would have to spend a lot more money on caring for those children. And the quality of life of those children would be a lot poorer. They are nurtured in a loving and caring environment by parents who have had to change their plans, goals and expectations for that child. They now have different plans and expectations for those children. These parents are totally dedicating their lives to caring for their children. It is beholden on governments and each and every member of this parliament—members of the government and members of the opposition—to do everything in their power to make the lives of carers just that little bit better. I see this legislation as doing just that. It puts in place a number of the recommendations of the Carer Payment (child) Review Taskforce. That is welcome.

I place on the record here in this parliament today that I will continue to fight and work for carers to get a better deal. I feel that no matter what age the child is, the parent is still locked into caring for their child until the day that they die or the day the child dies. One of the big issues that carers approach me about is what happens to their child once they are not longer here, once they die.

I have a fantastic young woman come to my office two afternoons a week. Her name is Tracy. She has represented Australia at the Paralympics. She was at university. She was a high achiever. She is a beautiful young girl. She developed brain tumours. She had those brain tumours removed and now she spends her life in a wheelchair. It has affected her speech and her fine motor skills, but she is still a very intelligent person who has a lot to offer.

Her parents are currently conducting a campaign to try and have a facility built in the Hunter area for younger people with disabilities. This is another issue that members of this parliament have come across from numerous Australians. Tracy’s parents are worried about what will happen to Tracy when they die. They do not want her to go into an aged-care facility with older people. Rather, they want to ensure that there is a place where Tracy can go where there are other young people with disabilities. It is all about quality of life. This is something that as a parliament and as a society we have to get our heads around as well. I intend to work with her family and with others in my region to try and bring this to fruition. I would encourage all members to think about this and look at ways of bringing about change to ensure that young people with disabilities have a good quality of life.

In conclusion, I would like to once again give my wholehearted support to the legislation that we are debating here today. The parents of children with disabilities deserve every bit of support that we can give them. The legislation that is before us today is a very strong step in that direction.

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