Steve Georganas (Hindmarsh, Australian Labor Party) Share this | Hansard source

I rise to support the National Disability Insurance Scheme Bill 2012. I want to commence my contribution with an account of a phone call I received from a constituent in my electorate in South Australia. This particular person—and I am sure we all get these types of phone calls and discussions with our constituents—was phoning not only on behalf of herself but also on behalf of her daughter of whom she was the principal carer. Her daughter has a physical disability and is reliant on assistance in and around the house. The daughter fell over in the shower one day and was taken by ambulance to hospital where she waited for assessment until the following day. She is incontinent, therefore, soiled the bed in which she continued to lay throughout that night. The next day she became frustrated waiting for the assessment and went to check herself out. Being incontinent, she requested a nappy, a blanket, anything she could use around herself. Before a staff person gave her something, again the same thing happened.

This lady's mother went on to say that disability agencies cannot meet this request or that request, but when push comes to shove they can meet some of the requests. Staff who visit the home to assist are not particularly well coordinated, nor is the equipment, or accessories to that equipment, that are made available. They are understaffed for tasks requiring two people, for example, and support is very, very awkward.

So what happens? This particular person's mother does what she can to help day in, day out, week in, week out, year in, year out. It is tough. It is absolutely, really, really tough, not just on this particular person with a disability, not just on her mother, but on this particular person's sister who also lives in the same house. The battles that are waged to draw in sufficient support to just get through one day for this particular person, the stress that is repeated again and again as this person strives to live her life, take their toll on all those concerned, all those around her—the person with the disability, her sister, her mother, carers, et cetera.

This is only one account of a household in my electorate of Hindmarsh. I am sure that each and every one of us has stories that they can share in this place. I am sure that there are many similar households in Adelaide, across the nation, in every state, in every city, in every town. There are hundreds of thousands of people whose lives are an exercise in endurance—enduring pain, enduring discomfort, enduring helplessness and dependency, and enduring the humiliation that comes from being unable to manage oneself or, as in the account I have just given, managing one's own bodily functions, which would be a terrible, terrible thing. There is the endurance of the disability support systems and agencies which, I am sure, do the best that they can with the available resources that they have to care for people. And there is the endurance of the absence of hope—the very different pain that comes from seeing with your own two eyes that society perhaps does not care, or that nobody cares bar a direct family member. This is an existence; it is not a life. This is an existence unbecoming of a member of our community or of our society. It is totally unsuitable for any one of us and inexcusable in its absence of both quality of life for the individual and level of care from a civilised community.

This is why we must support a complete reworking of the nature and the quantum of care that is accessed by members of our community that require it. It is right that we as a society embrace change for the good of members of our community. Our society's approach to such issues has changed radically over the years and over the decades. Without making light of it, it reminds me—and many of you may have read this novel—of Nikolai Gogol's Dead Souls, in which the hero passes through a rural Russian village and hears of a person who one day, years ago, went to bed and has not got out of it since. It is a cursory curiosity noted, I suppose, with a raised eyebrow or mild amusement but forgotten in an instant within the context of the story, but it is also perhaps a sign of the debilitating and untreated illness effectively ignored by this person's community in the 1800s in rural peasant life in Russia. But here today in 21st century Australia we do more, and we are recognising that we need to do a tremendous amount more still. We should not need anecdotes like that of my constituent to spur us to action. We should not need those horror stories and shock tactics. We should be able to look and listen much more attentively than that and act before a situation becomes so bad that it causes us to cringe.

The assistance that individuals receive is one side of this greater question: what do those in need need and want? Another side is the quality of life that by far the majority of us, I believe, take for granted. Late in 2012, Minister Shorten and I visited an organisation in my electorate in which people with disabilities come together and apply themselves to gainful employment. That is Orana Inc. at Netley. It does a great job in providing sustainable work to those who are able to receive training and perform one or more of a range of duties in this particular Netley factory. I thank Nicholas Mihalaras, Orana's CEO, for introducing the minister and me to so many of its employees that day. There are several businesses in and around Adelaide's western suburbs where people with disabilities work and through which people are active and gaining a sense of accomplishment. More than that, employment also provides routine and discipline that keep us as individuals moving and growing through our lives.

It is the control of people's own lives that has been lacking in far too many people's lives in the past, right around the nation, so we have before us a bill which will establish the framework of the National Disability Insurance Scheme and support the National Disability Insurance Scheme Launch Transition Agency move towards the launch of the NDIS in five sites around Australia from July this year, 2013. The first stage of the scheme will benefit more than 20,000 people with disabilities, their families and their carers living in South Australia, Tasmania, the ACT, the Hunter in New South Wales, and the Barwon area of Victoria. The bill sets out the objects and the principles under which the National Disability Insurance Scheme will operate. This includes giving people choice and control over the care and support they receive, ensuring that it gives effect in part to the United Nations Convention on the Rights of Persons with Disabilities.

The bill sets out the process for a person becoming a participant in the scheme, how participants develop a personal goal based plan with the agency and how reasonable and necessary supports will be assured to those participants. People will be able to choose how they manage their care and support and can receive assistance from local coordinators should they wish to do so. The bill also provides that the agency will be responsible for the provision of support to people with disability, their families and their carers and may provide funding to individuals and organisations to help people participate more fully in economic and social life.

People with disabilities, their families and carers will be key beneficiaries of the NDIS, starting with the launch of the first stage in mid-2013. In the first stage of the NDIS, the whole of the states of South Australia and Tasmania, including rural and regional areas, will be covered for young people with disabilities in the nominated age ranges.

I would just like to note, in concluding my remarks here today, that this bill reflects extensive work undertaken with the states and territories and with people with disability, their families and their carers, disability care workers, service providers and advocates on the design, funding and governance of an NDIS. The engagement process has included detailed consultation with the NDIS Advisory Group and NDIS expert groups and public engagement, which has been undertaken around the country by the National Disability and Carer Alliance. I commend the bill to the House.

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