Claire Moore (Queensland, Australian Labor Party, Shadow Minister for Women) Share this | Link to this | Hansard source

It is a pleasure to join with Senator Rachel Siewert and also with Senator Nova Peris to talk on this committee report this afternoon and also, at the very start, to pay considerable tribute to Senator Linda Reynolds, who came into the Senate quite recently. Through working with some people she met in a visit to a young person in a nursing home, she was stimulated and challenged to take up the issues around this particular concern and has been tireless in working with our committee. It is just a shame that she is not in the chamber today, but I feel certain she will be talking on this report at a future time.

In 2005, I was a member of a community affairs committee that looked into the issues around quality and equity in aged care, and at that time there was quite a community push around the issues of young people in nursing homes. In chapter 4 of its report, that committee—which has become known as the Marshall committee in reference to its chair, Senator Gavin Marshall—made a number of recommendations. One which I think is particularly pertinent in this discussion is:

The Committee is strongly of the view that the accommodation of young people in aged care facilities is unacceptable in most instances. The Committee therefore recommends that all jurisdictions work cooperatively to:

That report was in 2005. We are now in 2015, and that same recommendation could be moved unchanged into the recommendations from this report. That is a frustrating element of the work we have done.

There are also some very rewarding and positive elements. One was looking back and seeing that, as a result of the work of that committee and other pressures at the time—I never think that our Senate committees alone can change the world immediately; I think they can change the world, but they often need a lot of help from other areas—there was a response from the Council of Australian Governments and our Australian government, and there was a five-year program put in place, Younger People with Disability in Residential Aged Care. That was initiated in February 2006, and it was an important program. The commitment was by COAG, and it looked to making changes and ensuring that governments in every state and territory, and the federal government, had the issue of the inappropriate housing of young people in nursing homes as a priority, and there was significant funding for that five-year period.

One of the issues, though, is always to look at the accountabilities and the reporting process. Now, in 2015, it is difficult to see exactly what the real responses and impact of that process were. We know that there has been an examination, and unfortunately the examination was able to say that, whilst for some people this particular process had a good outcome, for many the need was still there. This is what we saw in our committee.

We also looked at the very important area of the human rights infrastructure within which young people in nursing homes should be considered. We know that we are a signatory to a number of United Nations conventions, and particularly the United Nations Convention on the Rights of People with Disabilities. A core component of that human rights commitment is 'the equal right of all persons with disabilities to live in the community, with choices equal to others', and that signatories 'shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community'. That, in fact, is the hub of the process that we followed in our committee: to listen to people about whether in fact that right has been enshrined in our community. Unfortunately, it is clear that that is just not true.

As with all of the committees in which we are involved in this place, the most confronting and rewarding aspect is listening to people who have the generosity, courage and resilience to come and talk to the committee about their own experiences. Again, across a number of public meetings that we had, we were challenged and privileged to meet with young people, their families and their supporters—people who have dedicated their lives to ensure that there can be difference in this space. Consistently, whilst we heard some good stories about where there has been some progress, overwhelmingly what people were saying to us was that they did not feel as though they had the opportunity for inclusion in their communities or the right to have a place to call home.

One of the things I remember was the submission that we had from an organisation called JFA Purple Orange—a great name and a great submission. I do not know whether you would call it 'Purple', but I will. 'Purple' said in its submission to us:

Home is more than shelter; it is a place of identity and expression, sanctuary and safety, a place that fosters strength, wellbeing and revival. Home is intimately and inextricably connected to the person. People with disability need to have choice in the place and with whom they live rather than simply accepting an accommodation offer or not. Current accommodation offers rarely relate to social networks, location of family, recognition of culture, personal desires or ambition.

You take what you are given because you do not know whether you will ever get a chance for anything else again. We heard from a number people about their fears, and we saw their anger about their voices not being heard. They were not given a choice of a place to call home. What is there through the limited access that people have to appropriate housing for disability across this country indicates that there is no choice. There is desperation, there is need and there is an acceptance in some places that that is the best you can do. Our committee does not accept that limitation. We cannot, because we have a responsibility to the people who came to talk to us to join with their calls to say they must have choice and they must have safety.

Senator Siewert talked briefly about the importance of rehabilitation. The clearest memory I have of this particular committee was meeting with families of people with significant disabilities and hearing from them about the way they have dedicated their lives to ensuring their family members will have support We have heard that aged care is not the appropriate place to provide support for a young person—often it is the only choice, but it is not appropriate—and we heard the anger about the fact that, once a young person is confined to aged care accommodation, their needs and the desperate need they have for rehabilitation to help them becomes stronger. They want to become the best and most independent person they can possibly be, but that rehabilitation service is not available in aged care accommodation. I suggest that anyone who is interested look at the Hansard coverage of a number of our hearings, particularly one that we did in Melbourne, when we heard about the way people's lives have been completely impacted and the dedication of those around them.

We have made a number of recommendations but the core of our recommendations must be providing appropriate accommodation for young people with disabilities—and by this we mean people under 65, not just under 50 and not just under 30. We can celebrate that there have been changes, particularly in the younger cohorts. For people under 65, aged care is not the best option. This should be a priority for governments at all levels, to ensure that there is change and response.

We wait, impatiently, for the NDIS paper on housing. I believe it has been leaked and that a paper is available and it has gone out to states—it just has not come to us. We did not request this particular document—we begged for it. We have been doing that for months. As yet the housing paper around NDIS has not become public. We believe that we have to see within this paper a real commitment to ensuring that those recommendations from 2005 will not be shelved in 2015. That will ensure that young people will not be only able to be placed in aged care accommodation when they have a disability. The people who are already in that place should be supported and we should be looking at ensuring that no more young people are provided only with that option. I also want to say thank you to all the people who helped us. (Time expired)

Nova Peris (NT, Australian Labor Party) Share this | Link to this | Hansard source

The young people in aged care report is a timely contribution to the important issue for young people with a disability who currently live in or are at risk of entering a residential aged care facility. I am very grateful to have been a member of the Community Affairs References Committee for this inquiry. I am sure all Australians understand that any one of us could become disabled at any time and be in need of care. So it is something that matters to all of us, but it also matters because a good society, and a great country, makes sure that people who are vulnerable are properly cared for—and that is what is at the heart of the mission of all carers.

As Senator Moore did, I thank my colleagues in the committee—Senator Siewert, the Chair, and Senator Moore and Senator Reynolds. Senator Reynolds is not here today but she was very passionate about this inquiry. I acknowledge the generosity and passion of everyone we spoke with—thank you to all the witnesses. In particular I would like to thank the witnesses from the Northern Territory: Carpentaria Disability Services, HPA, Somerville Community Services, Darwin Community Legal Service, the Aged and Disability Advocacy Service, the Multiple Sclerosis Society, Step Out Community Access Service, the Anyinginyi Health Aboriginal Corporation and the Department for Communities and Social Inclusion

I also acknowledge the previous inquiries held into this important issue. I have visited aged care facilities in the Northern Territory and I have seen the professionalism of those who work with disabled people in our community—whether that be in aged care facilities or in the home—and I have nothing but the utmost respect for carers. These wonderful dedicated carers strive to make our society better by assisting those members of our community that are in need of care and support.

In the Northern Territory and throughout Australia during our hearings we were able to provide affected people, their families, their carers, service providers and state and federal government agencies the opportunity to talk about current policies and the inadequate systems that have led to young people being placed in this situation. We listened and heard clearly what those living this experience had to say, and I think it was vital that we do that, particularly at this time of transition with the rollout of the NDIS. Senator Moore has recently touched on what the NDIS means. We looked at the relationships between this community of people with complex needs and the agencies, organisations and other stakeholders.

We also heard about the lived reality of people with complex needs and we sought to make some sound recommendations in our report of what could be done—not yesterday, but now and into the future. As I said previously, this inquiry set out to answer some important questions around the inadequacy of the existing services, the numbers and distribution of young people in the aged care system, those outside of any system, and those that are not currently receiving any care.

Accessing this data was not easy, and this needs to improve. We heard that repeatedly throughout this inquiry. Governments need that data to plan the disability and support services well into the future. We also looked at the trends and the health and support pathways that are available and the things that are not available. The serious and pressing question that has loomed for some time is whether the aged care system is appropriate for young people with a serious disability. I echo what Senator Moore said: the evidence was clear and the situation is not acceptable. Our recommendations take into account the evidence which clearly demonstrates that residential aged care is inappropriate for young people—especially for people under 65 years of age—and that there is an undersupply of Specialised Disability Accommodation. As mentioned, we note that the inquiry took place during the transition to the NDIS and that 'person-centred care' is vital and is the way of Australia's future. But it would be remiss of us not to point out the concerns we have—concerns regarding the arrangements for significant capital to be used to build the facilities that are required to address the dire shortages of appropriate facilities and services.

The major guiding principle is that young people with disabilities need to be in appropriate accommodation where they can access the care and services that they need. This is what we base our recommendations on. I commend the report to the Senate.

Catryna Bilyk (Tasmania, Australian Labor Party) Share this | Link to this | Hansard source

I too rise to take note of the Community Affairs References Committee report into the residential care arrangements for young people with severe disabilities. I seek leave to continue my remarks.