Claire Moore (Queensland, Australian Labor Party) Share this | Hansard source

In 2004, pretty soon after I came to this place, I was very honoured to be engaged in a Senate select committee that was looking at the issues of poverty in our community. Throughout that process there were some extraordinarily confronting experiences, and people gave of their hearts, minds and lives—which is a common experience in our committee.

I will always remember evidence that was taken in the city of Ballarat, a beautiful city. A lady came to the front and talked to us. She expressed the fact that she was very nervous. She did not tell me her exact age, but she told me she was in her 80s. I remember my friend Steve Hutchins was sitting beside me. She looked at me and said, 'I am so tired, but I'm too afraid to die,' which was a fairly confronting statement. I always say people should go back and have a look at our committee reports and evidence because they are a snapshot of our Australian community. She went on to describe the fact that she and her husband of many years—her husband had recently died—had a son in his 50s who had Down syndrome. She was too afraid to die because she did not know what was going to happen to her boy.

That was in 2004, yet the Senate Community Affairs References Committee heard those same stories as we listened to evidence. We can do better. We are at quite an exciting time, because at the same time as this committee was looking at the lifelong planning needs of people with disabilities and their families and handed down its report—we took a long time to work out a title for it, and we came up with something catchy: Disability and ageing: lifelong planning for a better futurewe had the opportunity to look at the draft reports arising from the referrals that the government has made to the Productivity Commission on two key areas—there was a referral on the general area of ageing and a referral on the general area of disabilities in our community. The draft reports on these areas have been given to the government and government responses are due to come back into wider parliamentary and community discussion in the next few months. We hope that the work of the community affairs committee can add to the work of the Productivity Commission so that we can ensure that no longer will there be families in our community that are so tired, so lost and so afraid of the system that they are fearful of what will happen to their children.

I acknowledge the work of Senator Sue Boyce. Sue had brought a recommendation for an inquiry to our committee, and she was absolutely determined that we were going to act on it. That determination has been rewarded, because where we could we looked to build on work that had previously been done. As Senator Siewert said, a few years ago this committee looked at Commonwealth-state disability agreements and came up with a range of recommend­ations, some of which were part of the National Disability Agreement that the government brought in on 1 January 2009. We can celebrate the fact that there is now a national disability agreement; but when we read through the core elements of that agreement, we say that the states, the territories and the Commonwealth must work together to ensure that there is a better system for people with disabilities in our community.

The agreement goes through several topics. It talks about 'improved access to disability care, including consideration of systems that provide a single point of access.' How many times did we hear during the committee process about the need for a single point of access so that people would be able with confidence and without fear to contact one area from which they will be able to obtain information, support and guidance? Unsurprisingly, considering that it is in the national disability agreement, we have a recommendation from our committee saying that we should have a single point of access, and that is good.

The National Disability Agreement talks about there being 'a nationally-consistent assessment process and a quality assurance system', and the committee recommended that too. The National Disability Agreement also mentions the need for 'a renewed focus on early intervention and planning to ensure that clients receive the most appropriate and timely support.' The committee has recommended that also. In fact, we get a fair hint by looking at the cover of the committee's report that the committee think that that is a good idea as well.

The committee has recommended improv­ing the capacity of service providers to better develop and train care workers. That is a necessary ongoing measure, Madam Acting Deputy President Pratt, as you know. In any system that aims to provide care, we need to have trained, effective, caring, responsible workers so that that element of trust which is so intrinsically necessary to any government service delivery is put forward.

As Senator Siewert said with a degree of frustration, there is also the issue around consistent access to disability aids and equipment. It is ongoing, consistent and frustrating problem, and it is blindingly obvious that people who have disabilities in 2011 should have access to appropriate aids and equipment. It should not matter at what stage of the identification of their disability is at or whether they are covered by a state or a federal arrangement, they should have the best possible equipment and support so that they can have the most rewarding life possible.

Of all things in the National Disability Agreement, these are my personal favourites: the National Disability Agreement signed in 2009 is 'a commitment by all levels of government to work together to better measure the level of unmet demand for disability services' which promises 'continued reform of roles and responsibility in relation to community mental health disability services and aged care.' For me, one of the most revealing things about the committee process was that it showed that we have good policy. But we could have better policy, and through the introduction of the measures in the reports from the Productivity Commission on ageing and disabilities we can work to have the best possible policy for our community. We found consistently in the evidence we took, the submissions we received and in the general discussions that happened—at least after the hearings that I attended: people wanted to share with us; they wanted to talk with us—that people wanted to be involved. So the frustrating thing is that we have good policy but it is not being implemented. The core message for me is that we need to move to ensure that implementation is effectively monitored.

I am not saying that there are not good results—Senator Siewert referred to that, and our committee report mentions where there have been amazing successes and rewards. To be quite parochial, I mention here the Toowoomba Intellectual Disability Support Association—TIDSA—and Tony Lanigan, who is the chair of that organisation. He has been working with me and many people in this place for many years, talking from a parent's perspective about how a group of parents can get together and develop plans around the needs of their children and then consistently harry state and federal governments to ensure that they get effective funding. TIDSA has received some funding from the state government, and that organisation is a genuine success story. We need to have that success story replicated across all the communities in our country. The house that TIDSA has formed was described by some of the elderly people who came to the committee's hearing in Toowoomba as a life saver for them and their families, because they have a sense of confidence that their children will have a secure housing future and people to care for them. That is the kind of model that this report is hoping will be identified, imple­mented and rewarded through government policy.

The committee talked about access to the system, and consistently through the committee process we heard about the complexity of the system. That is true—the system is complex—but if we act on the National Disability Agreement, which talks about 'a commitment by all levels of government to work together to better measure the level of unmet demand' and if we look at how the reforms can operate, the system can become less complex. The focus should be on the individual and their family, which is the core aspect of the committee's report. I am going a little bit over our time, Senator Boyce, but we have it because there is no-one else here. The last chapter of our report looks at issues of lifelong planning and support schemes that are now in place. There are extraordinarily valuable processes in some parts of our country, which we put up as examples from which we can learn and hopefully build on in future modelling. When he came to see us, Mr Edward Birt from Life Without Barriers explained:

If you think about a system like person-centred planning, which is something that is talked about a lot at the moment in disability services, where the person's goals and aspirations are at the centre of what you are doing, their vision for what their life might look like is the driving force behind what we do, and every disability service standard around the country would say that is absolutely right: individual needs, decision making and choice, service access, valued status—the list goes on. They are all wonderful things. The legislation has it absolutely right, but I think that lack of funding and service options is a big problem.

What we learnt from the people who came to us is that there should be people-centred planning. We congratulate that; we want it into the future.