In making a contribution to the National Disability Insurance Scheme Bill 2013, I start with a quote from French philosopher Simone Weil. She is a little-known philosopher, but I think what she says in this regard is particularly important. She says:
Equality is the public recognition, effectively expressed in institutions and manners, of the principle that an equal degree of attention is due to the human needs of all human beings.
Indeed, I think that is what the NDIS is set to implement. It is about creating an institution that practically implements our nation's commitment to meeting the needs of all its citizens.
Samantha Jenkinson, an awarded disability advocate from WA, says something very similar. She says:
… people with disability want, and expect, the resources they need to participate as fully functioning members of their communities to be available and accessible, as and when they are needed. People with disability want to work with governments to deliver a support system that achieves this—a support system that values their contribution and encourages their independence.
I think that really embodies what the NDIS is all about. To my mind, the NDIS should include the most basic and complex of human needs for people to be to have their needs met. We have known for too long that too many people with disability and their families have lived without being able to get their basic needs met. This can include housing, it can include shelter and it can include adequate food and health care. But it also includes a family life, it includes a social life and it includes a working life. It includes friendship, social interaction and intimate personal relationships. These are things that we all legitimately aspire to.
Implementing the NDIS should mean that we can give support so people with disability can have full and free expression and get their needs met. We know that the Productivity Commission described disability services in Australia as inequitable, underfunded, fragmented and inefficient, giving people with disability little choice and utterly compromising their lives. This includes people in Western Australia.
In making a contribution to this debate, I would like to talk about some WA perspectives. I have heard firsthand that people with disabilities and their families and carers in WA want to be part of this national scheme. I note that Mr Barnett, the Premier of WA, has signed on at COAG to work towards a national scheme. He says he is keen for a launch site in WA. But WA has not yet put forward a proposal that meets the requirements of the National Disability Insurance Scheme. I would really like to encourage the state of WA to keep taking steps forward to participate.
There are important parts of this debate that affect WA, because we have a quite well-operating Disability Services Commission. It is an agency that is there to meet the needs of Western Australian people with disabilities. It has some 70,000 Western Australians that rely on assistance for personal care, mobility and communication. It is recognised internationally because of its flexibility and because it allows for self-directed support. These are the kinds of things that are being adopted and embodied in the National Disability Insurance Scheme. Western Australia does need some improvement in that regard because the NDIS in fact envisages greater levels of autonomy than Western Australia's already lauded system allows for. Naturally there have been some groups in WA that have been protective. They want to make sure that when we do the NDIS, what the NDIS replaces in WA is equal if not better. I have every confidence that it will be, and I am here to encourage WA to get onboard.
From a WA perspective, it is equally important to look at who is missing out. I had a conversation with a couple of women, including Samantha Jenkinson and a friend of hers, about this. You look at the circumstances of people with disability and their needs. Their needs might be quite similar, but under the fragmented scheme we have at the moment the capacity to get their needs met is not similar. I will give you examples. Someone who has a car accident ends up with a compensation payout that they need to manage, and that then enables them to access the care and support they need. A second situation might be someone born with cerebral palsy, who would have an entitlement under the Western Australian Disabilities Services Commission for some care and support.
The third situation is someone with multiple sclerosis who, like the other two, cannot walk, and is unable to meet all of their personal care needs. They are ineligible for any kind of support, and they are the kind of people that very tragically end up in nursing homes in this country. This is a very real issue for a great many Western Australians who are currently excluded from getting the care and support they that need within disability services in Western Australia. This new scheme—should Western Australia come onboard—will help support those people. It is absolutely vital that however you acquire your disability, the quality of opportunity to access services and support is there for everybody.
I am really pleased that the NDIS puts at its heart self-directed services, allowing for opportunity for individuals, families and community to have a real say about how services are designed and delivered. At the heart of that should be people with disability. We need to break away from the traditional model of disability services by allowing flexibility for those who receive disability services—allowing people with disability to control the care they receive and the services they access.
Samantha Jenkinson gave a great example. She expressed her frustration and the frustration of other people with disability at their capacity to get the support and care they need when they want it. She gave a wonderful example of a service run by people with disability to be able to get after-hours care access to personal care and support to go out. It is a 6 pm to 6 am service run by people with disability, where you can call up at short notice and get access to a personal carer to take you out. You might want to go out for dinner, you might want to go to a concert, you might want to go nightclubbing or you might want to go visit family or friends, but you are able to define when and where you want to go out rather than needing to be at home by six o'clock when your carer has tucked you into bed. I know how I would prefer to live my life, with that flexibility and autonomy. This is what is embedded in this bill.
People with disabilities, their families and carers in WA want us to make good progress on this. They want WA to be part of this vital national scheme. There is some frustration amongst many that we are not yet making more progress in that regard, but I am pleased that the NDIS will take the great attributes of the WA system and apply them to citizens all over Australia.
I have to share a little bit of a personal story with you, and that is my experience of the Western Australian families that have experienced extreme stress because they cannot access services that meet their needs or at a high enough level of care.
There is a terrific program in WA that I would highly commend to senators, which is the Politician Adoption Scheme run by the Development Disability Council of WA. I have the great privilege of having been adopted into the Deery family, and I am sure that some of my Western Australian colleagues will have been adopted into families also. Aden in the Deery family is a young man with severe autism. I witnessed the trauma of his family when they were at absolute crisis point over many, many years because they were not coping with Aden living at home, and yet they could not find supported accommodation for him—he was not yet allocated a place. In order to get into disability services supported accommodation in WA, you pretty much first have to prove that you are at absolute breaking point, and at breaking point they were. Very fortunately, I was able to witness what a difference it made for Aden to be able to find supported accommodation and care. But it should be better than that. We should strive for people not to reach breaking point before their needs are met. I pay tribute to the Deery family in speaking to the NDIS bill this afternoon.
In closing, we need to stop the cruel lottery system that we have for disability services that I think the Deery family is a good example of. We need to look at the benefits of a long-term plan for people who we know will need ongoing care and support. There is no reason to lurch from crisis to crisis when we know that we will need a bucket of resources for each person with a disability and that we need to manage those resources over time.
Finally, this bill represents the kinds of values I want to be able to uphold as a citizen, as a senator and as an Australian. It brings with it the capacity to change lives; to change lives not just for people with disability but for their families—all of our families—for workplaces, for the community, for our relationships and friendships and, importantly, for our humanity, because we know that our needs and desires as human beings are all equally important.