Statements by Senators – Disability Services -16 August 2017
Senator REYNOLDS (Western Australia) (12:43): Sometimes in this place you choose the issues that you bring to this chamber and sometimes they come to you. Today, I would like to share one that has come to me and my colleagues senators Moore and Siewert and others. In late 2014, I was made aware of the plight of over 7,000 younger Australians with disability who were forced to live in aged-care facilities because there was simply nowhere else for them to go. Initially, I couldn’t believe it was true that in this day and age young Australians with disability in Australia, with some of the highest care needs in our society, were forced to live in aged care. Sadly, it was very true. The first inquiry I initiated as a senator in this place, in December 2014, was an inquiry into this shocking situation and how my colleagues and I, one of whom is in this chamber today, could address the situation along.
In our Federation our reform processes are mind-numbingly complex and exhausting, and they defeat far too many, but I’m so happy that that has not happened in this case. In this place, we often consider the big nationwide programs—the numbers and the figures—but rarely do we share the stories of those who are impacted by the decisions we make every day in this chamber.
Today, I’m delighted to be able to share with you the story of one remarkable young Australian woman: Kirby Littley. Kirby and her parents Carol and Kevin Littley all join us in the President’s gallery today. Kirby is a testament to the benefits of the NDIS, but she is also a reminder of the need to get thousands of others just like her out of aged care. In relation to Kirby, when the Summer Foundation—who is also represented here today—first introduced me to Kirby and her parents, she was living in a residential aged-care facility as a result of multiple strokes following brain surgery. Until that point she had been a lively, independent and fun-loving young woman, and a teacher, but, following the strokes, Kirby was rendered unable to move, walk or talk.
Following further medical complications, and her resulting high-care needs, Kirby’s family were advised that the only option they had left for Kirby was to admit her to an aged-care facility. But she did not receive the care that she needed to get better and to reintegrate into society. But her wonderful parents never, ever gave up and they did not accept her diagnosis or what the doctors were telling them. They saw, as I saw when I first met Kirby in the aged-care facility, that there was a woman with a wicked sense of humour, who was a strong young woman, just bursting to get out of the shackles of her disability—that was just so clear. I’ve kept that in mind every single day we’ve looked at this issue here in this place.
Since entering the NDIS and getting out of an aged-care facility, Kirby’s life has changed dramatically. She’s been able to return home and her recovery and her quality of life have dramatically improved with the support of the NDIA and her carer—who is also here today—and the love, support and unwavering commitment of her parents. I was delighted to hear from Kirby yesterday that she’s now getting so much better that she’s actually doing personal training twice a week and she’s also volunteering back at work one day a week, which is fantastic. But this remarkable recovery, which still has a long way to go, would simply not have happened if she had remained in aged care. Her courage and her perseverance, despite the medical advice of the day, is a truly remarkable story.
It does remind us that today there are still over 6,200 younger Australians with disabilities who remain in aged care, with more than 2,000 every year still being admitted, even in the NDIS trial sites. In my own home state of Western Australia, there are at least 470 younger Australians still living permanently in aged care. But, I do want to commend Ministers Porter and Wyatt for their advocacy and support in seeking to speed up a resolution to this complex problem and for their work with their state and territory counterparts, where a lot of the responsibility for treatment, rehabilitation and health care still lies.
On a positive note, the NDIA is now working more effectively with the health and aged-care systems. There is still a long way to go, but things are improving. The NDIA is now in the process of establishing better interactions between hospital discharge systems and other agencies in order to avoid admissions into the aged-care system. This will allow over 28,000 people with a disability across this country to access affordable and accessible housing. The new SDA funding stream in the NDIS will fix an important and significant gap that had previously prevented people with a disability, people like Kirby, from living the life they desire in the home that they desire—something the rest of us take for granted.
The government and the NDIA have also done a great job in setting up this funding stream. Policy has been embedded as a core part of the NDIS, through a legislative instrument that was finalised in March this year. Now, wonderfully, we’re moving from policy design to actual implementation, but this is only part of the way along the journey. There is still a long way and many years to go. I believe our collective challenge in this place, along with the government, families and the NDIA, is to ensure now that the SDA delivers the required housing where it is needed. The sad fact is, even if all 6,200 were accepted tomorrow on to the NDIS and given packages, there would still be nowhere for them to go in terms of where they want to live and the support that they require. Unfortunately, they would still be required to stay in aged care until accommodation is available.
Last night the Summer Foundation and Youngcare outlined at a parliamentary friendship group how this policy can be effective in all of our communities. The Summer Foundation and Youngcare are leading by example and building new houses, building dozens of developments all around the country to show us how it can be done—and it can be done. The NDIS housing that has been built to date is a great start but it meets less than 10 per cent of the needs of all young people in aged care, so we now urgently need to work this at scale. There are models, thanks to Youngcare, Summer Foundation and others, that demonstrate that it can work and that it is financially viable. But, as I said, we need to now work this to scale.
Around $2.5 billion in new investment is needed to build the housing just for young people in aged care. An additional $9 billion is needed to build housing for other NDIS recipients who will get this payment. The NDIS does have funds to pay for this, and the market can deliver. We’ve already seen evidence of this on the ground. But to get it to this scale, the NDIA now needs to work much more closely with the market to ensure that the market responds and starts building these facilities where and when they’re needed. But I think the most important thing for the market now is certainty. It needs to know that there will be people, that it will still get financial support to give it the confidence to build. Markets can bear the risks involved in delivering housing, but they need to know these payments will continue beyond the next four to five years. Certainty on how prices will be reviewed is critical to get institutional investors and large-scale developers to commit funding to build this new housing.
But, in the interim, I believe every one of us in this and the other place can help all of these 6,200 people. Every single one of us have at least 20 to 30 of these people in lower house electorates and many hundreds in each of our states and territories. So what can we do? We can actually help by identifying those in our local areas and helping them to more quickly connect to health, aged-care and housing providers. We could also, on a case-by-case basis, just help them through the myriad state and federal agencies that are responsible for providing some of the support that they’re not getting. We can also, all of us, work with our state parliamentary colleagues to ensure that all of these services are delivered for all of these younger Australians while they are still in aged care to transition to a much better and a much more independent life.
I would like to thank Kirby, Carol, and Kevin for coming here, and also thank Summer Foundation, Youngcare, and the other agencies who have worked so hard on behalf of all of these people. But the fact that Kirby is here today, the fact that she is talking to us and travelling and doing all the amazing things she is now doing is not only a testament to the NDIA but it a testament to how wrong doctors can be and to the power of what can be done when we all come together and work together and look at the individual—for individuals like Kirby. It’s very humbling. We are making progress, but there is so much more to be done.