Rachel Siewert (WA, Australian Greens) Share this | Link to this | Hansard source

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.

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.

Claire Moore (Queensland, Australian Labor Party) Share this | Link to 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.

Sue Boyce (Queensland, Liberal Party) Share this | Link to this | Hansard source

I am not quite sure how far we are going to take this multi-partisanship. I had the same quote as Senator Moore marked to use! I would also very much like to thank the members of the Senate community affairs committee and the secretariat, who, as the previous speakers have mentioned, worked under extremely difficult circumstances with some changes of personnel going on at crucial times. I would like to thank them all for bringing this report to fruition.

The report has 15 recommendations. It was deliberately designed to complement the current work being done by the Productivity Commission on the National Disability Insurance Scheme. We very deliberately chose to have the word 'lifelong' in our title—that is, Disability and ageing: lifelong planning for a better future. The National Disability Insurance Scheme report looks at the current situation and the need for funding—it talks about a system that is not even a system; so underfunded and inequitable and broken is the current disability support 'system' that it does not even function as a system. The Productivity Commission's report was not looking at the exact question that so many parents and other carers lie awake at night wondering about—that is, what happens when I can no longer care?

This is a relatively new question in developed countries because up until not all that many years ago people with intellectual disabilities and people with physical disabilities were not likely to outlive their parents. The average life expectancy for a person with Down syndrome in Australia in the 1950s was 27. People no longer live in institutions; they live in the community. They have better nutrition as a result and a better sense of their own worth. They also benefit from the huge advances in medical technologies that have been made, which assist people in every area of their lives, including the pain management that some people with physical disabilities need to undertake regularly. So the life expectancy for people with disabilities has expanded past the span of their parents' lives.

Not only do we need to think about the fact that their parents are going to die—it is always a difficult term to use, but their parents are going to die—but also in many cases parents are going to get to the stage where they can no longer provide the level of care needed. They are just not physically strong enough any longer to assist their adult child with their needs. We are supposed to have a system that would offer respite and offer specialist support to assist families in those situations. It does not happen. Or, if it does happen, it happens in an ad hoc way that cannot be relied on and never quite meets the needs of the people who are doing the huge amount of caring that needs to happen.

Lifelong planning is the focus of this report—not service planning. I would like to quote from a Queensland organisation called Pave the Way. It goes on to make the distinction that parents of people with disabilities are used to planning from the time their children are babies, but that is primarily service planning. It is about trying to get your child to the right speech therapist or to the right podiatrist or into the right education program or into the right work system. It is about planning for the near term, the short term; it is not planning for what happens when you are no longer there. As both Senators Moore and Siewert have mentioned, there are many barriers to planning. Some of the barriers to planning are simply that people do not have the time. It takes quite a long time to sit down and plan what a good life will look like and who will support it when the carer cannot do so any longer. It is not only the issue of individual families finding time to do it, it is also getting the space to do it. You need respite care, probably, to undertake the planning.

In many cases families with children with disabilities—and this came out again in this inquiry—are quite socially isolated. Because of their need to care, their friendship groups have diminished more and more. So knowing people that you can even ask to become involved in helping to support your son or daughter becomes problematic. And then of course there is the question: what is the point of planning if there is nothing at the end to underpin that plan?

One of our recommendations here—which supplements the one about one-stop shops—is to have a look at improving the accessibility of information on government websites and updating the FaHCSIA website so that its information is up to date, comprehensive and navigable. I know that many parents regard up-to-date lists of services as cruel jokes in themselves, because you can get this great list of services but, when you go to use those services, they are booked out for years to come, or you do not meet the criteria, or they are a pilot program and they do not know if their funding will be going into the next month, and so it goes on. There are so many areas where that is not available.

I hope we have pointed out here that lifelong planning involves not just where you live or what you do or how much service support you have; it is also about who cares about the quality of that support and who cares about whether you are being abused or exploited in those situations. One of the examples that I found quite profound was from a group called Scope, a disability services provider in Victoria. They were talking about why people might have lost faith in the ability of the government system to provide accommodation. They said:

In the emergency housing area, if a crisis happens the person with the disability ends up going into respite care facility. Last year in the north-western metropolitan region 50 per cent of our respite places were blocked up—it sounds awful saying 'blocked up'—and were unable to be used because of crises that had happened in ageing carers' homes and the person with the disability had to take the place for a year or two years. That meant all the other people that wanted to use respite were not able to use it because 50 per cent of our places were taken up with crises.

I think that might give you a sense of why parents would be less than confident that the system is going to support them or that the services that they might find on a website are actually going to be available when they need them. We referred again to the culture of crisis which the Productivity Commission report brought out so firmly.

We have, as I said, made 15 recommend­ations. Some of the more important ones were around the difficulty that people have navigating between disability employment, disability retirement and premature ageing in the area of disability. This needs to be considered, perhaps in the same way that Aboriginal and Torres Strait Islander ageing is looked at. Another recommendation is that the government establish with the states and territories a succession planning framework that organisations can use to develop—and assist families to develop—lifelong plans. Our 15th recommendation is that recurrent funding be made available in the next budget to assist community run organisations and individual families to pursue disability planning. I very much hope that this will be pursued and I very much recommend the report to the Senate.

Louise Pratt (WA, Australian Labor Party) Share this | Link to this | Hansard source

Order! The time allotted for this debate has expired.

Sue Boyce (Queensland, Liberal Party) Share this | Link to this | Hansard source

I seek leave to continue my remarks later.

Leave granted; debate adjourned.