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Disability and ageing: lifelong planning for a better future

Speeches in Parliament
Rachel Siewert 6 Jul 2011

Senator SIEWERT (Western Australia—Australian Greens Whip) (17:10):  I present the final report of the Community Affairs References Committee, Disability and ageing: lifelong planning for a better future, together with the Hansard record of proceedings and documents presented to the committee.

Ordered that the report be printed.
Senator SIEWERT:  I table the report and I move:

That the Senate take note of the report.

It is with great pleasure that I table this report. This report contains some very important recommendations. It contains 15 recommendations and makes some points about some very important issues. The committee report has taken quite some time to develop and we had hearings in a number of locations around Australia, including Canberra, Melbourne, Sydney and Toowoomba. 
It is important to note that this report coincides with work being undertaken by the Productivity Commission into disability care and support. However, there is a significant difference between the work that we have done in this report and the draft report of the Productivity Commission. The focus of our committee report is on the lifelong and sustainable planning that assists carers of a person with a disability, helps them to plan for the future and particularly helps them answer the questions: 'What happens when I'm no longer here? What happens when I can no longer care for the person that I am caring for?'
As I said, the committee took evidence in a number of locations around Australia. We took evidence from people with disabilities, carers, carer organisations, peak bodies, service providers, and state and federal government departments. The evidence that the committee received suggested that the challenges facing the disability sector are substantial and that the existing system is not operating effectively. People
with disabilities, carers, service providers and governments all agreed that there are many inadequacies in the choice, funding and support options available for people with a disability.
Given that Australia is anticipating significant population ageing, which will be accompanied by a reduction in the availability of informal care and support, the committee is deeply concerned by evidence suggesting that little sustainable planning is taking place. Many carers are so consumed by their day-to-day caring role that they have not even begun to start thinking about planning. Others find the planning a considerable challenge and need support to manage what is a complex and multifaceted task.
In the report, the committee focuses on why it is critical that whole-of-life planning takes place. We are particularly keen to point out the importance of whole-of-life planning and I will also point out here that this was picked up in a previous report that this committee did into the CSTDA as it was then known—the Commonwealth State Territory Disability Agreement. When this committee did that inquiry we picked up and highlighted the need for whole-of-life planning and we have looked at it in more detail in this report. The report considers some of the major practical barriers to planning including access to information, accommodation support, availability of respite, appropriateness of assessment tools, and the difficulty of navigating the disability and aged care interface. In spite of the fact that the government provides limited planning support to people with disabilities and their carers, the committee heard many inspiring stories, frequently told by parent carers, documenting the work taking place in the community. Across Australia there are pockets of people doing the most extraordinary work, in the most part voluntarily, because they see the need.
The committee heard of disability advocacy groups who have established what they call 'supported living funds', 'circles of support' or 'circles of friends' to assist with the future care of their adult children with disability; of parents in Sydney who are setting up an 'intentional community'; of a group in Gunnedah who established a rehabilitation day program for mental health consumers; of a group of very active parents in Toowoomba who organised a letter campaign, successfully advocating for funding to establish a house for shared accommodation, the Anden—hearing that story was simply inspiring; of an individual in Hervey Bay who organised the council to provide accommodation where she can support mental health consumers in living independently; and of the important work in my home state of Western Australia by Perth Home Care Services and by Planned Individual Networks, commonly known as PIN, who have established microboards and networks of support to ensure that people receive lifelong planning support.
While it should be acknowledged that some of these initiatives have received some government funding, many are established, supported and funded by parent carers and are taking place independently of government. Many of the grassroots level, non-government initiatives identified in our report emerged in response to the lack of government support or the cumulative frustration of dealing, over many years, with complex and confusing government bureaucracies. Others emerged in response to service support which is often piecemeal, or where there was an absence of ongoing case management. Above all, these initiatives, frequently parent run, emerged in response to the frustration of dealing with bureaucracies that are simply not responsive enough, innovative enough or flexible enough to meet people's complex needs. Over and over again the committee heard that services are just not meeting the needs of people with disabilities or their carers.
In acknowledgment of these innovative planning schemes, the committee makes two significant recommendations. Firstly, it recommends that the government look to increase its support of these community based organisations that provide planning services. We believe this is essential. Secondly, it recommends that the government establish a national framework to give clear direction on how these organisations can ensure transparency and develop adequate governance arrangements. The committee envisages these guidelines also represent the beginning of an integrated and coordinated national approach to planning. It is really important that these innovative community organisations are given flexible support to provide their planning initiatives, but it is also essential, because of the very nature of the work that they do, that they meet the transparency and accountability requirements that we would expect, because these initiatives will be looking after the long-term needs of those living with a disability.
In addition to these recommendations, I would like to point out a couple of others. Of course, we believe all 15 are important, and I am sure my colleagues in the committee will highlight some more. We believe we have to solve the issue of portability of funding and services for people transitioning from the disability to the aged-care sector. We have to improve issues around portability of aides and support across state and territory boundaries. It just has to be resolved. It is not beyond the wit of this country to do this. We also need to look at issues around retirement from Australian disability enterprises. That is a key issue. There are many other important recommendations. Very importantly, the government needs to acknowledge the need for lifelong planning and to support this lifelong planning by investing in community based initiatives that make this happen.
Before finishing I would like to say thank you to, obviously, my colleagues on the committee. It is always a pleasure to work on the community affairs committees, whether it is the legislative or the references committee. I believe we work well together and do some very important work. I would like to acknowledge and say thank you for all the support and camaraderie we share. I would also very strongly like to say thank you to the secretariat, who have really moved mountains to get these reports done. They have had a tremendous workload over the last couple of months and continue to produce first-class work. Thank you very much to the secretariat. Very importantly, I want to say thank you for the hours of work that the community organisations, parents and carers put into our committee inquiry. These are people who are working day to day caring for people they love, and they took time out of their busy schedules to give us evidence, to write the submissions, and to come to our hearings and present evidence. These people sometimes struggle to get respite care on an ongoing basis or when they need it. They are the people that are doing it tough. We know that they need help and that there needs to be improvement in the services they receive. I thank them very much for the time and effort they put into ensuring that we got the evidence we needed to make the recommendations we have made.

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