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Monday, 11 February 2013
Page: 684

Mr CHESTER (Gippsland) (17:43): I also welcome the opportunity to speak on the National Disability Insurance Scheme. I concur with the member for Denison and his fine words. This is nation-building work that we are doing in this place. It is quite an historic occasion. It is particularly pleasing to see members on both sides of the House in furious agreement as they contribute to the debate. It has been a culmination of many years of campaigning by people with disabilities, their carers, family and friends, activists within the community, and members of parliament both in this place and in other jurisdictions throughout Australia on both sides of the political divide.

I recognise, as I have in the past, the member for Maribyrnong and former minister, Bill Shorten, who I believe helped give the issue the greater public recognition it needed to put this policy initiative on the government's agenda, and I give him credit for that. In doing so, I also thank members on both sides of the House who have been supportive, particularly the shadow minister, Mitch Fifield, who I think has also pursued this matter in a very responsible and bipartisan manner. And I include the Leader of the Opposition, who has made the issue of disability and support for carers a subject to which he has contributed enormously through his fundraising ride, the Pollie Pedal, which he has done for many years, and certainly over the next three years he will be raising money for Carers Australia. I think that by doing so he has helped raise the issue to greater prominence, both in the local media through the route the Pollie Pedal takes and in the national media.

I would also like to recognise the carers of people with disabilities who may be following this debate this afternoon—mainly family members, who have perhaps the greatest fear of all: that the person they care for, normally their own child, will not have good care once they are gone. That comes across time and time again when you talk to people in the community who are responsible for caring for people with disabilities. Their greatest fear is: who is going to look after my child when I am gone? So, I do recognise the enormous amount of unpaid work they do on behalf of our community to support people with disabilities.

I would like to take the opportunity tonight to congratulate a lady in my own electorate by the name of Jean Tops from the Gippsland Carers Association. Jean has been a formidable lobbyist and advocate on behalf of people with disabilities in the Gippsland region. The Gippsland Carers Association has been in existence for around 15 years, providing a voluntary support service to the families of carers throughout Gippsland. They have recognised a need in the community to support the carers, and they have worked diligently to provide information, education, support and the advocacy work I mentioned before to assist people with disabilities in the community.

Jean has been, as I said, a formidable advocate and lobbyist on behalf of carers and continues to do so, and I can assure you that her submission to the Senate Community Affairs Legislation Committee on the National Disability Insurance Scheme Bill is well worth reading. She makes several points about the current major stumbling blocks in relation to support for people with disabilities—including that perennial argument of the states, territories and the Commonwealth over who will be responsible for what part of the funding. She makes it very clear what she thinks about making sure there is not continued duplication and waste of effort and ensuring that the Commonwealth steps up to the mark with the NDIS. She does make one point that I think is worth further consideration by the government in relation to the need for a regional carer network. It is something that Jean has advocated very strongly for in the past to ensure that regional carers have a support network in place, particularly in the more remote parts of our community, where services are often hard to access and it is difficult for people to get up-to-date and accurate information. So, I recommend the submission Jean has made to the Senate legislation committee.

I also want to take the opportunity tonight to thank and congratulate the professional staff who work in our community on a daily basis, in the schools and other facilities, involved in caring for people with disabilities. Certainly in my electorate of Gippsland we are blessed to have some outstanding staff. Their professionalism and their commitment is extraordinary. I know it is a task that I myself would find very difficult to fulfil. You often visit the special schools or meet up with the students on excursions. I am not sure that I would have the patience that the staff have, or their determination and resilience. The healthy dose of love and compassion that they have for the people in their care is something that is quite remarkable and does them great credit. Without them in our community we would struggle to support people with disabilities in the Gippsland region.

It is pleasing that the parliament is united in its voice of support for the National Disability Insurance Scheme. I believe disability services, above all other issues, is one that surely should not be a political issue. It does dishearten me whenever I hear any member try to make any political mileage out of this debate, because it should be an issue that we can find a way to work through in a bipartisan manner. It will take several parliaments to fulfil the implementation of the NDIS. The first steps may be taken today by a Labor government, and I give all due credit to the Prime Minister and her cabinet for making those first steps. But it may well be that future steps are made by Liberals or Nationals in a coalition or by some other form of minority government, if we find ourselves in that position again. In any case, it is going to require a major funding commitment from not only this government but also successive governments. There is a concern that in our discussion here today we do not really know how we are going to fully pay for the future stage of the implementation. I do not make that comment to score any political point whatsoever; it is just a statement of fact: we really have not figured out yet in this place, through the budgetary process—as far as I am aware—how we are going to pay for the full implementation of the NDIS. That challenge will need to be overcome by members on both sides of the House, and I encourage all members to continue to work in the most bipartisan way we can as we try to address that issue.

The NDIS should not be seen as a holy grail. It is not going to solve all the problems of people with disabilities or their carers. It is not offering any cure for the ailments they may suffer. But it is going to make their lives just a bit easier, and I think that is an admirable ambition for this chamber to have. By putting this framework in place I am very confident that once we work through some very difficult issues—and it is going to be difficult and complex to introduce—we are going to be able to make a direct and practical improvement in the lives of people with disabilities and their carers in Australia.

I have had the opportunity, as I am sure many members have, to speak to people in the electorate about issues facing people with disabilities and their carers. It is one of the most frustrating things to try to deal with—to work your way through a system that is crisis driven and largely unresponsive to your needs. I draw your attention to the example of one lady in my electorate, by the name of Anita Bennell. She has twin daughters, both in their early 30s, who are profoundly disabled. They require full-time care, and there is no cure or any likelihood of improvement as they grow older. It has been very frustrating for Anita and her husband, Ken, to try to work their way through the system and provide the care the girls need. It seems like there is an obstacle almost every step of the way as they try to navigate their way through the system.

A classic example: the couple bought a property and renovated it to try to suit the girls' living requirements and facilities for carers, planning for the future, for when they are not able to care for their daughters anymore. This was all done at their own cost. Their aim was to try to transition the girls into this accommodation while they were still able to do their share of the caring, if you like. But there is no funding at all to assist them in terms of trying to make a permanent move. And there were actually some tax implications for them that were quite unfortunate as well, which were extraordinarily frustrating. They were exposed to a tax liability when they were trying to do the right thing by providing for the care of their own children.

Their other great issue is the minimal amount of funding that is available through the state government at the moment for respite care. When we are talking about two 30-year-old girls with profound disabilities it does start to wear the parents out and they need some respite on an occasional basis. It has been a frustrating time for Anita and her husband, Ken, and I congratulate them for their extraordinary resilience not only as they continue to work in support of their own children but also as they advocate on behalf of other people who have loved ones with disabilities. Her tireless efforts are something that she should be congratulated for.

Because the opportunity presents itself this evening, I would like also to read from a letter from another lady in my electorate, Pam George from Bairnsdale. It is easy sometimes in this place to talk in the abstract, and we talk about schemes and projects and forums and terms like that, but sometimes it is important to get right back to the people we are talking about. This is a letter from Pam who describes a typical day. She did not write this to me seeking sympathy, she just wanted to help us understand exactly what a day looks like for her, so I will take this opportunity to quote from this letter that she wrote to me: 'I am writing you this letter just to inform you in more detail my reasons for requesting exceptional circumstances, basically about my day with Nathan,' her son. 'I could be up at night anything from two to a dozen times. If Nathan sets his mind to not sleeping, he will just climb out of bed constantly. Also, the seizures he is now having occur when he is sleeping. From the minute he is up for the day he is noisy and wanting to bang his back on anything and everything: doors, windows, furniture et cetera. When I am trying to do anything I am constantly having to attend to Nathan because of this. I have to do everything for Nathan, finely cut up his food, as he won't chew, and feed him. He will not hold a lidded cup with a straw to drink from. Wash him, shower him, shave him, dress him, change nappies—he is fully incontinent—clean his teeth and give him his medication. Everything that you would do for yourself has to be done for Nathan. As I write this, he has just sneezed and cannot wipe or blow his nose, so that is another thing that needs to be done. Nathan can crawl, which is good for him. But over the length of time taken to shower, dress, shave et cetera, he is constantly moving and wants to crawl away. He doesn't understand when asked to keep still until I'm finished. If he wants to go, that's it, he's off.'

And it goes on in terms of the lack of support for people like Pam under the current system: 'There are lots of appointments, meetings and organising for the last 12 months searching for a suitable wheelchair. His current one is falling to pieces as he rocks, bangs back and forth in it extremely hard, so he requires something very strong but not heavy to push. I have to make sure we get the right one for him and the cost is between $7,000 and $17,000. This is a snapshot of life with Nathan. I am not complaining about it, just stating facts. I want him to stay at home as long as possible. Sometimes things just get on top of me and don't get done or done on time in this case. Time goes by too quickly. This situation is causing some stress as well which doesn't help my health issues. I'm not asking for anything more than I'm entitled to, just a bit of compassion to achieve a positive outcome to the situation.'

The situation that Pam was referring to was the fact that she was 12 days late in applying for her Renewable Energy Certificate Registry. Unfortunately, we could not accommodate her. Pam is doing all of this, saving our government a fortune in terms of the care she provides for her young son Nathan, but because she was 12 days late in making a submission for her Small-scale Technology Certificates under the photovoltaic system that she installed, we have not been able to help her out. She was not expecting any charity, she was just making the point that sometimes things get just a little bit away from her. If we can find ways not just in this piece of legislation, but also in other things we do in this place to accommodate people like Pam and her family I think we will be doing a very good thing for our community.

It is with some sense of relief that I read the Productivity Commission's final report into disability care and support, which agreed with people like Anita and Pam that the current system of disability care and the support that it offers are unsustainable; they are underfunded and they are unfair and do not deliver appropriate levels of care and support to Australians with a disability. If one thing has been made very clear over the past five years in discussions in this place, it is that the current system of disability support services is broken and that a wealthy nation like Australia can certainly do better; we can give this issue a higher priority in future budgetary rounds.

In my first speech in this place, nearly five years ago, I spoke about the need for increased funding, particularly in regional areas, for support services for children with a disability and their carers, and I have worked in the most bipartisan way that I can to support efforts from both sides of the chamber for this better system which we are debating here this evening.

The difficulty for people working in the current system right now is that they feel that every aspect of the current system for them is a struggle. It is confusing, there is duplication across different jurisdictions, there are no consistent rules across state borders and we cannot even agree on what a disability is across different state borders. We do not have a consistent definition for people who move from state to state. They often feel alone, they feel like they are outcasts in our community and they often feel that they are the problem that is just too hard for anyone to deal with. I congratulate the government for the steps it is taking here this evening.

The letter I quoted from previously makes it clear that even what we consider to be pretty simple tasks can be extraordinarily time consuming and labour intensive, and the best laid plans can certainly run off track for people caring for a person with a disability.

With that in mind I support the bill that is before the House this evening and I urge the government to continue to work in the most bipartisan way it can and to keep the politics out of this debate. I am disappointed that we have not gone down the path of supporting the motion that was put forward by the member for Dawson earlier last year to establish a joint parliamentary committee, to be chaired by both sides of politics, to oversee the establishment and implementation of the NDIS. I think that is a mistake and we can probably do better than that in the future. It will take men and women of good faith on both sides of parliament to deliver this reform and to commit to the funding that is so desperately required. I support this bill and I urge the Prime Minister to perhaps reconsider her position regarding the joint parliamentary committee, because if we provide a non-partisan environment for the full development of the NDIS people with disabilities and their carers throughout Australia will be thankful for it.