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Tuesday, 12 March 2013
Page: 1594


Mr CROOK (O'Connor) (12:44): I also welcome the opportunity to speak on the National Disability Insurance Scheme Bill 2012. I agree with many statements made by members of this House, on both sides of politics, and I would particularly like to endorse the comments of the member for Wannon. I have enjoyed the non-politicised, passionate words from members such as the member for Gippsland and my friend the member for Denison. As members are all too aware, the current disability support system is unfair, underfunded and disjointed. The current system fails to give people with a disability proper choice about their future and gives no guarantee of access to appropriate support.

Australia is a fortunate, wealthy country where most Australians enjoy freedom of choice and boundless opportunities. However, one of the largest minority groups, people living with a disability, are not afforded basic rights and are not protected by the social safety net that protects most Australians. In many cases Australia has failed to provide people living with a disability with the very basic commitments of fairness and human rights. It is sad to hear that by most empirical measurements Australians living with disabilities and their carers are among the most disadvantaged groups in Australia. All Australians deserve a fair go. In this respect, these changes are long overdue. I believe we will look back at this time as an important crossroad in our nation.

There have been many times in this 43rd Parliament when I have been embarrassed about the politicking, infighting and obsession with party room antics that occur at the expense of our constituents, but today I am proud. I am proud to be a member of this parliament when both sides of politics are working together to improve the lives of Australians and to give people with a disability a right to realise their potential—a right that should be afforded to all Australians.

In such an important debate, I feel it is important to stop and make some acknowledgements. As members have done before me, I take this opportunity to acknowledge the carers of people with disabilities—to all the O'Connor electorate carers who I have had the pleasure of meeting and all those who I am yet to meet and, indeed, all carers in Australia. I acknowledge the enduring love and lifelong commitment that carers give to their disabled family members and friends. I acknowledge the huge amount of work that carers undertake and their willingness to participate in vital, unpaid work that benefits the entire community. I acknowledge the integral role that carers play in the Australian health system and in the Australian economy. I acknowledge and congratulate many of those carers who have done so much work to put this debate on the national agenda for those who cannot.

I also acknowledge the professional staff who work in the O'Connor electorate and I acknowledge the professional staff who work in high-care facilities, nursing homes and schools throughout Australia. Thank you for your tireless work. It not only improves the lives of many individuals and their families but contributes to the social fabric of our regional communities.

Finally, I acknowledge all of those people living with a disability in the O'Connor electorate. I acknowledge all those who joined me for a morning tea in Kalgoorlie and to all those who joined Wendy Duncan, at the time the member of the Legislative Council in Western Australia, for a DisabiliTEA in Esperance. In particular, I acknowledge the special people from my electorate who have taken the time to share their stories with me and to contribute to this debate.

Throughout 2012 I heard from many constituents on this issue—some with disabilities, some carers, some support service professionals, and many community members who thought that people with a disability deserved a fairer go. As members have done before me, I would like to share a couple of stories. It is most important to remember that these stories reflect what it is like every single day for many Australians. One such story that sticks in my mind is from Kathy and Greg Jones in Narrogin in regional Western Australia. Kathy and Greg are 60-year-old parents of a son with cerebral palsy. Their son is in a wheelchair and is fully reliant on his parents for everything. He is unable to walk or talk. Kathy and Greg, like many committed parents with a disabled child, often wonder, 'What happens when we are unable to care for our child? Once we pass away, where will our child live? How will he be looked after?' Without the NDIS, the answer to these questions and to many more is too difficult to contemplate by any parent. Kathy and Greg have commented that, once they know that the NDIS is on the way, they may begin to sleep at night again.

Another example is Jill, a tireless worker in disability support services in the city of Albany on the south-west coast of my electorate. Jill has described the astonishing amount of stress that families are put under when they are unable to access proper support for their disabled child. Under the current system, families have to bare their souls and participate in a very crisis-driven application process for support. Jill knows of families that simply cannot cope with the stress of not having support for their child. Some families have ended up with mental illnesses and within the mental health system from the stress. This, in fact, compounds the problem because, as we all know, mental health has its issues around funding and service delivery, particularly in regional and remote Australia.

Other families have considered handing their child back to the Department of Child Protection. This a notion that, to most, is incomprehensible and a decision that must be devastating. These levels of stress are echoed by participants in the Productivity Commission inquiry who noted that parents regularly contemplate suicide as they have been unable to find adequate support for their child.

My next story is of a very special Goldfields woman who gave me information about the NDIS in 2010 at my campaign launch in Kalgoorlie prior to being an elected member of this House. I have known Jo Russell for many, many years. For Jo the NDIS has been a very long time coming. Jo is the mother of three children and her eldest and youngest, Daniel and Megan, both have autism. Jo has dealt with disability service providers for over 20 years and I trust her when she says that the problem with disability care is that the system was not created and modelled by those who actually use it. I cannot summarise some of the information Jo has provided to me, so will read Jo's comments. She stated:

Too often, we have to repeat our stories over and over, only to be told we are not 'eligible' or that funding is insufficient for our needs. We have to create and recreate our stories of stress, misery, financial insufficiency and difficulties. Absolutely humiliating and hardly uplifting.

We are sick to the back teeth of service providers and organisations 'assessing' us, and determining what they feel is best for us.

Truthfully, it makes me want to vomit—so tired of the emphasis of service providers on doing things for and 'to' people, rather than 'with' people.

Disability assistance is seen more as a charity model—the terms used in disability language is revolting—we are known as 'clients'—actually we are PEOPLE, thank you!

Jo continued:

THEIR words include things like victim, support, care, crisis, assimilation, programmes, behaviours.

But the language of disability should include words like empowerment, rights and participation, choice, control, and self-determination, dignity, and assurance.

It is critical that we have a system that supports people to make their own decisions, chart their own course, call the shots, but needs to be accompanied by appropriate checks and balances on outcomes. And that system is the NDIS.

Jo added:

So that people with disabilities and their carers have the RIGHT to build the best life THEY can, through their own design and choice, with the help that is needed to get there. This is the NDIS.

Jo, I could not have put that any better myself and I am proud today to stand in this House and read your words. Jo is a strong advocate for not only her own children but also every other family or individual touched by disability in the Goldfields region. Keep up the amazing work you do, Jo. I am totally bewildered by how you do it all on two hours sleep a day.

On a personal note I have a niece with Down syndrome and have seen firsthand the unexpected difficulties that can arise for families including my own. Tess is a twin and she and Emma are now both 11 years old. My wife and I babysit Tess from time to time, and getting her out of the pool is like pulling teeth. Tess does not let me watch the footy when the Dockers are playing because her mum and dad have brainwashed her into only watching the Eagles. That is something that really bemuses me. Tess attends a wonderful school in Kalgoorlie which can cater for her needs and that of her classmates. Again I touch on the amazing work that carers and teachers offer our young students with disabilities. Tess is a great kid, with so much energy, enthusiasm and love to give. However, I know the NDIS will give her just that much more support for her to continue to grow as the gorgeous young lady she already is.

These stories fill me with mixed emotions. The first is to do with the love that families have within them. The second is disappointment that the current system has failed so many Australians. However, the strongest emotion must be the one of hope in all of us for the change that the NDIS promises to so many families and hope that this place can work to support people with disabilities. As politicians, as leaders, as community members, as members of families, we have a responsibility to work together to ensure the implementation of this program without letting politics get in the way. This cannot and must not be politicised.

The unavoidable truth is that this program needs both sides of politics to work together. Although the key players from government and the opposition should be congratulated on bringing this issue to the floor, the success of the NDIS will require ongoing collaboration, non-partisan commitment and funding security. The NDIS will require funding from this government and from future governments, even in a tight fiscal environment. The NDIS will require commitment to its implementation from this government and from future governments. For this reason alone, the amendment moved by the opposition leader should be absolutely endorsed. The most important issue in this debate in my view is that we must not raise the hopes of these very special people in our community only to fail them at the very last hurdle. In this respect, I support the bill and encourage all members to truly put aside party politics on this issue. We must keep politics out of the debate. We need to do what is owed to these families affected by disability. For these reasons, I support the bill. Thank you.