Julie Owens (Parramatta, Australian Labor Party) Share this | Hansard source

I thank the member for Gilmore for moving a motion calling for a bipartisan approach to improving the provision and delivery of services to Australians living with severe and permanent disability and their families and carers. This is exactly what is needed in so many areas and it has been for such a long time—a comprehensive look at the way state and federal governments work together to deliver services and a clear recognition that this most vulnerable group in our community is more in need of being put first, above politics, than perhaps any other group.

I am pleased that the Rudd government moved very quickly on this. In fact, in the government’s first 100 days, the federal and state ministers for disabilities got together to progress negotiations on the fourth Commonwealth state/territory disability agreement and the development of an overarching national disability strategy. The national disability strategy will provide a foundation for national disability policy leadership which will continue beyond any individual government’s term. It is absolutely time to end the blame game and work cooperatively together for the benefit of the over 3.9 million Australians—that is, one in five Australians—who live with a disability.

In my first weeks as the representative for Parramatta—about three and a bit years ago—I was well and truly put in my place by one of my constituents about my responsibilities when it came to federal-state relationships. Her name was Elizabeth—she knows her last name and so do I. She wrote to me about a state matter and I responded by saying that it was a state matter. She wrote back to me in the strongest terms pointing out that that was my problem—that politicians make choices about what is or is not in their area of responsibility and that I should not impose my choices on her. She said state-federal divisions were my problem, not hers. I have to say that she had a point. It is not a perfect point and it is not always a practical point but, when it comes to people living with disabilities, it is the only practical approach. Families of people with disabilities already live with extraordinary barriers due to their disabilities. The rules, the extraordinary routines of care, the unpredictable nature of their needs and difficulties travelling or even moving about are obstacles to overcome just in moving through a normal day. These people do not need additional bureaucratic obstacles or governments creating divisions of responsibility based on anything other than how best to make it possible for people with disabilities and their families who care for them to do the things they need to do just to get through the day, let alone flourish.

There are many examples in my electorate of people trying to find services but being stuck in funding or service boxes that do not quite fit them or stuck between boxes and trying to find ways to live their lives within funding models that are rigid or inadequate for them. They are unclear of which level of government is responsible for what or, worse still, they do not know who is responsible. But they live somewhere in the gaps that are left after responsibilities have been allocated to one level of government or department. One of the most compelling of these is the families with children at Kingsdene School. It is a school with about 20 children. It is funded on a three-way agreement between the New South Wales Department of Ageing, Disability and Home Care, the then Commonwealth Department of Education, Science and Training, and Anglicare. Kingsdene is part of the lives of families with children with profound disabilities. Most of the students are non-verbal, and they cover the full range from preschool to age 17. They go to school to do things like learn to use a modified spoon or make friends without pulling their hair out. Kingsdene is unusual because it is a combined residential school facility, with the children staying overnight at the school during the week and going home on the weekends.

While the state funding is recurrent, the school has had to apply to the federal government each year without really fitting within the funding guidelines. The strain of not knowing each year whether the school will be able to offer a place for their child has had families at breaking point. Kingsdene is an example of an extraordinary service for people living with a profound disability but, because it provides a different kind of service from most other schools, it does not fit neatly into the funding boxes. If Elizabeth who wrote to me about state-federal responsibilities is listening, she will write me a letter tomorrow saying that I am in the government and the funding categories are my problem and should not be the problem of the parents of Kingsdene—and she would of course, once again, be absolutely right. In government we have to have rules because we are responsible for taxpayers’ money. But it is worth reminding ourselves today and every day that, in a perfect world, services would be delivered as needed, particularly to those in most need.

We are unlikely to reach the perfect world, but we can start towards it by removing the politics and the artificial divisions of responsibility that make life easy for governments and bureaucrats but harder for those who need help. We on this side have started it with the beginning of the development of the National Disability Strategy. We have a long way to go. I have met the parents of Kingsdene. They are good parents. I will no doubt face them again in a few months and they will want to know how we are going. (Time expired)

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