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Disability Services – 30 November 2016

Senator REYNOLDS (Western Australia) (13:20): As we all prepare in this place to return home to spend Christmas with our family and friends, I ask all in this chamber and, in fact, all Australians to consider the plight of over 6,200 younger Australians who will spend this Christmas living in an aged-care facility and not at home with their loved ones—a distressing situation which, shockingly, need not be this way.

The facts are this: today, over 6,200 younger Australians between 18 years of age and 65 live permanently in residential aged-care homes. Forty-six per cent of these residents are under the age of 59 and, sadly, many are as young as 18 and in their 20s and 30s. In my home state of Western Australia alone, more than 500 Western Australians are inappropriately housed in these facilities.

Australia’s aged-care facilities, as good as many are, are designed to deliver the acute gerontology requirements of older Australians with an average age today of over 85. These facilities are not designed or equipped to house long term and support the very specific requirements of younger people who have, and should have, their whole lives ahead of them. While these facilities do provide basic shelter and care, they cannot and are not equipped to provide the individualised multidisciplinary health and rehabilitation support required for these younger Australians with complex requirements, never mind providing them with the quality of life that all younger Australians should rightly aspire to. Research into the matter is very, very clear: young people who live long term in aged-care facilities with the dying experience declining emotional, physical and mental health. But none of us in this place really needed the research to tell us this.

This is why I sponsored my first inquiry as a senator into the plight of younger Australians with physical and mental disabilities residing in aged care. It came about because two wonderful women, Bronwyn Morkham, the national director of the Young People in Nursing Homes National Alliance, and Dr Di Winkler, from the Summer Foundation, separately brought this situation to my attention. Initially, I found it almost impossible to believe that as a nation we could consign so many of our young people indefinitely to residential aged care. But, sadly, my research quickly demonstrated that this is, in fact, the situation in Australia.

After an exhaustive national inquiry in November 2014, the Senate inquiry reported back to the Senate in June 2015. The committee made a wide-ranging series of recommendations, which it believed would provide an interim solution for the next few years as the NDIS rolled out, nationally, to ensure that all those who wanted and needed to relocate out of these aged-care facilities could do so—so they could finally receive the health rehabilitation and disability support they so badly require and so they could move out into the home of their choice, which is something almost all other Australians take for granted.

We have a choice about where we live and what we do with our lives, which, sadly, is denied to these 6,200 Australians. A stroke, a car accident, a degenerative disease—and there, but for the grace of God, go any of us in this chamber and our families and friends. It is that simple. It could be any of us who find ourselves in this situation. There is also a financial burden placed on young people and their families. Many have children themselves and they have extended family members who find it challenging to visit their mother, father, brother or sister in such a facility.

Young people in nursing homes, sadly, are subject to the same income and assets assessments, relating to government assistance, as elderly residents of aged-care facilities. This can mean that a young person today is up to $1,000 worse off per fortnight than if they were already part of the National Disability Insurance Scheme. Sadly, some individuals decide, as a consequence, that the only way forward for them to afford the care they need is to divorce their partner. Others decide they have to sell their family home or, because of their circumstances, they lose their home, job and family. Even if they can find a way to get themselves out of residential aged care, they have no home to return to. Consequently, many end up living the rest of their lives in aged care.

The NDIS was created to solve problems exactly like this by better meeting the long-term requirements of people with a disability, their families and carers. This government has already put an additional $10 billion per year into the scheme to support, exactly, groups of people like this. Despite this, young people in nursing homes are not yet prioritised by state or territory governments in the NDIS rollout. This is a completely unacceptable situation given that there are now enough places in the NDIS to allow all young people in aged care to enter the scheme.

The Summer Foundation’s work with young people in nursing homes in NSW and Victoria showed that 98 per cent of the young people they worked with were eligible for the NDIS. Yet after two years of the NDIS being available in the trial sites, hardly any young people in aged care had entered it. Today I have written to ministers Porter and Prentice seeking a speedy government response to this inquiry and also recommending an additional five-point course of action on how to get these people out so that they do not have to spend another Christmas, next year, living in residential aged care.

The first recommendation is that we must reduce the bureaucratic hurdles required to enter the NDIS. They are very identifiable and eminently solvable. The second recommendation is that we must also commit to young people in nursing homes being among the first participants in the NDIS rollout. Again, it is very doable. The positions are available. States and territories simply have to prioritise this particular group in their individual states and territories. The third recommendation is that aged-care providers must be better prepared to move their young residents into the NDIS, which can be done through a campaign and provider workshops and a series of information. Again, it is very doable, and we can do it now. The fourth recommendation is that there needs to be a one-off initiative to fully connect all young people in nursing homes to the NDIS. The evidence is that many of them are still largely unaware of the NDIS and their eligibility and how they access the scheme. Again, it is something that is eminently doable with the desire and the will to do it.

The fifth and final recommendation the government—governments at all levels—must do is stop the pipeline of young Australians entering residential aged care, largely from hospitals or other facilities, where they complete rehabilitation for things like acquired brain injuries and degenerative diseases. At the state and territory level there are simply insufficient rehabilitation facilities. The only option is residential aged care, because they are not able to be taken care of, for their medical requirements, at home. This is very solvable, but to stop this we have to intervene now and stop people going into residential aged care.

Over the course of this inquiry and my advocacy in this area, I keep getting the feeling, from federal and state departments, that this is all too hard. The easiest option for them is to make everybody else and all these young people in Australia just sit back and wait, for another few years, while the full rollout occurs. Well, I am sorry, but it is not too hard and it is simply the wrong thing to do. We know who these 6,200 Australians are, we know what their needs are, we know what needs to be done and we know that over 98 per cent will eventually be eligible anyway under the NDIS. Why should they have to wait for bureaucrats to get their act together?

It is time for the NDIA, state and federal governments to act and prioritise this very discrete and very needy group of Australians. I will leave the Senate with this thought. What better present could we all provide than the certainty for these 6,200 younger Australians that they will not have to spend another Christmas in a nursing home? This will certainly be my New Year’s Eve wish this year, that we can work together to make this happen.

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