Monday, 9 September 2019
Private Members' Business
National Disability Insurance Scheme
It's good to note that we're in an energy-saving mood here in the Federation Chamber today. It looks like we have about 14 of our lights out. I hope that's some technical problem and not an attempt to cut down on our electricity bill. I move:
That this House:
(1) notes the Council of Australian Governments Disability Reform Council met on 28 June 2019 and resolved a number of long-standing issues, including the interaction of the National Disability Insurance Scheme (NDIS) with the health system;
(2) welcomes the council's agreement to a range of disability-related health supports that will be provided through the NDIS; and
(3) notes the:
(a) NDIS will fund disability-related health supports where the supports are required as a result of the participant's disability and assist the participant to undertake activities of daily living;
(b) types of health supports that will be funded by the NDIS include continence supports, dysphagia and nutrition supports, respiratory supports and supports for wound and pressure care; and
(c) approach agreed to by the council to fund disability related health supports under the NDIS recognises participants need to be placed at the centre of all decisions.
We welcome the progress that we are making on the NDIS. We should acknowledge that this is a $22 billion scheme that is unprecedented in our nation's history. Everyone on both sides of the parliament should be proud of the work that has been done so far but, in doing so, should acknowledge that there are still a lot of problems. There are still teething problems. Any scheme of such a size and involving such enormous transition will have problems. This government is doing everything it possibly can to work through those problems and to make sure that those Australians who are unfortunate enough to be struck down with some type of physical or intellectual disability are given all the support that they can get.
I was pleased to participate in a roundtable discussion with the Prime Minister and the Minister for the NDIS, Minister Robert, a fortnight ago here in Canberra. One thing that came up during those discussions is that it's very important, when our scheme goes forward, that we look not just at supporting the Australian with a disability but at supporting the whole family unit, whatever shape or form that family may take. Because, ultimately, the National Disability Insurance Scheme will be strongest if we make sure that that person is in with a strong family and is given all that family support. From our experiences when we speak with parents of disabled children, we all know the pressures that they are under. We see that separations in families with children with disability are far, far higher than in the rest of society. I know the number of mothers I speak with who take depression medicine because of the strain of bringing up their disabled child. We have to make sure our National Disability Insurance Scheme is focused on the family unit and on supporting the family unit because that is the best way to ensure that Australians with disability get the best possible care.
We've got to take the pressure off the carers. We've got to take the pressure off other family members. We've got to make sure that we're not simply focusing on material supports for the person with a disability but are looking at the family as a whole and concentrating on that family, making sure that we as a government are giving them all the support we can. But, ultimately, we can have all the goodwill that we want here, but we can only deliver this as long as this country continues to have a strong economy. That's why I encourage all members to continue to encourage the support— (Time expired)
For thousands of families across Australia—indeed, there are many in my electorate and, no doubt, in the member for Hughes's electorate and everyone else's electorate as well—the NDIS has become a critical part of everyday life. It's certainly opened many avenues for people who live with disability, helping to improve their way of life and, quite frankly, helping people reach their potential. When the Gillard government established the National Disability Insurance Scheme, as you will recall, it was certainly built on the belief that every person in our community, including those who live with a disability, deserve to know that their country is committed to building a society based on acceptance and inclusion. I know the member for Hughes well understands this, given his personal experience in the area of disability, but I think it's important that the scheme that we have, the NDIS, actually does address and deliver on those qualities. However, I think everyone must acknowledge that the implementation of the NDIS has not been without significant challenges. That's why it's cautiously welcomed that the government is in the process of rolling out a plan to address pressures on families, particularly those trying to access the Early Childhood Early Intervention pathways of the NDIS.
I know that raising a child under six is challenging, but raising a child with a disability places enormous pressure on families. I know that from personal experience. My office—and, no doubt, the offices of many members here—has been inundated with inquiries from parents about their waiting times. Many wait for months to access NDIS plans that would allow their young children to gain access to much needed early childhood support. Many parents have paid hundreds, if not thousands, of dollars in out-of-pocket costs while they wait for a review of their plan or wait for a plan itself from the NDIA for services such as speech pathology, other physical therapies et cetera. I hope the interim plans for these families, who are expecting to wait over 50 days, are being implemented without the same kinds of delays and inadequacies that we've seen, regrettably, in many facets of the NDIS. In theory, the plan will assist many young families and will allow them to pay crucial support services whilst waiting for the full NDIS plan to be delivered or, alternatively, waiting for their plan to be reviewed. However, I have to say I fear the same problems that have overwhelmed the NDIA may very well be apparent in terms of accessing early childhood pathways. I trust that these interim plans will not simply be a way of kicking the can further down the road, and I hope the government holds to its commitment to a six-month time frame for the full NDIS plan to be received.
Grace Fava—many around here will personally know her—founder and CEO of the Autism Advisory and Support Service, was certainly encouraged by the $10,000 interim package for families that has been announced. However, Grace herself has raised concerns about the efficiency of implementing this program, particularly when NDIA offices are currently overwhelmed with the number of cases already before them. It is important that we acknowledge that there is a need not just for funds to go into the NDIS plans but for more efficient services to be delivered and more properly trained staff—particularly staff who have an empathy for families who live with someone with a disability. In my electorate, these matters are certainly even more complicated, from the fact that mine is a most multicultural community and that people from culturally and linguistically diverse backgrounds find it very difficult to navigate the NDIA's system.
With the government's underspend on the NDIS last year of $1.6 billion, I would've thought that part of that money should've been put aside to be able to come back into helping those who need it, particularly families who live with disability—as opposed to the money being set aside to help support the government's budget bottom line. I think we can do better. We need to do better for families. And we certainly need to work for meaningful inclusion of people with disabilities in our society.
There's no doubt in my mind that the NDIS is significantly improving the lives of hundreds of constituents in my electorate of Bass, but I certainly recognise that improvements need to be made to address issues within the system as it continues to roll out. Tasmania commenced the full NDIS scheme on 1 July this year, and it is expected that more than 2,200 northern Tasmanians will be part of the service by 2020. I wholeheartedly support the Morrison government's NDIS Participant Service Guarantee and the opportunity it is providing to all participants, including those in northern Tasmania, to have their say.
It is a passion of mine, as the member for Bass, to work at realising the potential for genuine change through the NDIS for those I represent. Just a few weeks after I was sworn in, I hosted the NDIS roundtable in Launceston with the Prime Minister and the Minister for the NDIS, Stuart Robert. This was a great opportunity for a small group of participants and their families to directly address what is and what isn't working for them within the current system. I certainly know that the attendees who were there on that day felt that they were heard by the Prime Minister and Minister Robert, who have both continuously demonstrated that they want to see the NDIS improving the lives of Australians in meaningful ways, and that they are committed to ongoing improvements to the scheme.
There were some excellent examples from individuals and families represented at that event of how their participation in the NDIS has created significant benefits to their lives. One woman shared the incredibly powerful story of her daughter, who had been able to transition from institutional care and return to the family home as a result of the scheme and had had a demonstrated improvement in her health and wellbeing as a result. Another mother of a very young participant spoke of how early intervention services accessed through the scheme had benefited her and their family.
But of course the roundtable also presented an opportunity for participants to identify gaps and challenges that they have experienced, mostly around the interface with transport and health services. It's so important to hear directly from people about these issues so that they are able to be addressed as the scheme moves forward.
I'd like to take the time here today to say a sincere and generous thank you to Minister Robert, who has been a tremendous listener as we've discussed the NDIS challenges facing those in my electorate. More than that, he has been a true force for change in this area and has already solved a number of issues raised with me by my constituents. In one particular case I was recently contacted by a constituent advocating on behalf of one of her students who was having difficulty accessing equipment, resulting in significant inconvenience and loss of dignity for the young man. Minister Robert was very responsive and moved very quickly to rectify the problem. On behalf of that young man and his family, I say: 'Thank you, Minister Robert.'
A short time after that initial NDIS roundtable, I met with a local disability advocate in Bass, Jane Wardlaw, to discuss further opportunities to engage with NDIS participants. Those of us in the northern Tasmanian community who have been fortunate enough to cross paths with Jane will understand what a fierce and passionate advocate she is for so many. From our discussion, I've begun to organise, with Jane's help, a series of further roundtable discussions beginning at the end of this month and focusing on a few key themes that have been raised with me as areas of concern for participants in northern Tasmania. The goal of these forums is to focus on gathering valuable information on what is and what isn't working within the current system.
While it is vital for us as members of parliament to know what isn't working, it is also incredibly important to understand what is working, as lives have been positively impacted by the introduction of the NDIS. The first workshop open to NDIS participants and their families is set for late September, with further workshops planned for later in the year. A separate workshop for NDIS providers to provide their feedback is also planned. It is my intention to continue to engage proactively with participants, service providers, advocates and other stakeholders in the years ahead, as there is an incredible amount of positivity and goodwill amongst all of these groups and it is such a valuable opportunity to gather and provide that vital feedback so we can continue to grow and shape the NDIS to be the very best that it can be.
This motion highlights the ongoing issues with the implementation of the National Disability Insurance Scheme under this Liberal government. The member for Hughes is right to point out that the issues dealt with at COAG in June were longstanding—fundamentals like how the NDIS should interact with the health system. Why is this only being resolved now?
It was Labor that established the NDIS, and this came after many years of campaigning by people with disability and their families and carers. It promised to change people's lives for the better and enable Australians with disabilities to live the lives they wanted to. They have waited so long to escape an inadequate and fragmented system, to have the quality of life that they deserve. Labor listened to people with disability and stood with them on that journey to introduce the NDIS, the greatest social reform since Medicare. That is what is promised by the NDIS and what we in the Labor Party remain committed to seeing delivered.
While it is very important that the NDIS has had bipartisan support—and I acknowledge that—its implementation is not being prioritised as it should be under this Liberal government. There are serious, ongoing issues, the addressing of which I know a Labor minister would have made a top priority. The fact that Scott Morrison and the Liberals are proud of a budget surplus that is based largely on a $1.6 billion underspend on the NDIS tells you everything you need to know. That underspend does not represent good management; it represents people with disability not being able to access the supports they need.
It is devastating to speak with people who thought the NDIS was going to change their lives for the better but have in fact found it has made them worse. At NDIS forums and when talking with constituents, the burden that people with disability and their families carry is palpable. You can feel people's exasperation with systems that are not working, with the lack of transparency and personalised support, with dealing with a government whose underlining attitude to the NDIS, as it is with most social policy, is: What are these people trying to get? How are they trying to game the system? They are trying to get the support they need to live their lives and to participate fully in our community.
One constituent who has contacted me is the mother of a three-year-old girl who is unable to walk or stand. At the beginning of this year she applied to the NDIS to get her daughter a standing frame. Six months later there is still no word on when, or even if, her daughter will be granted this device. When you're three, six months is critical in terms of your development and learning, and this delay is completely unacceptable. I ask the minister and the Prime Minister to put themselves in the shoes of that little girl and her mother—or, indeed, the shoes of the countless other NDIS participants they must be hearing from—and see what it feels like for them. Stories like this are not uncommon and they expose the systemic issues within the NDIS. Many of these stem from the planning process.
The NDIS is a major reform and major adjustments are required, but many of the solutions seem obvious. No. 1, we need to remove the staffing cap on the NDIA. Why you would cap staffing on an agency that is delivering such a major reform is beyond me. To get the NDIS right we need an adequately resourced NDIA.
No. 2, people need to see their draft plans. Again, it is absolutely astonishing that this is not part of the process. This is fundamental to transparency and would reduce the need for further reviews. In my view, participants should also be able to have a contact person that they deal with each time they contact the NDIA, rather than a call centre model. NDIS plans are complex, not one size fits all, and this would make things a lot easier not only for participants but also, surely, for the NDIA. Most importantly, what is absolutely fundamental to getting the NDIS right is listening to what people with disability are saying. The NDIS is fundamentally about two things: choice and control. I urge the government to urgently prioritise fixing the NDIS so that it truly delivers choice and control to people with disability.
I'm very pleased to rise to speak on this motion, which, whilst well intended, really does miss some very fundamental issues that are more than evident now with the NDIS. I say at the outset that, after six years of Liberal governments fumbling the implementation of the National Disability Insurance Scheme, we on this side of the Chamber would welcome any improvements, particularly those around the funding of health supports and helping participants avoid getting stranded in hospital while waiting for vacancies to come up in appropriate forms of housing—and I'll go to that issue in a moment.
The very real fact is that the Liberals have ripped $1.6 billion from the NDIS. They are attempting to balance a budget on the backs of some of the most vulnerable people in our nation. This underfunding and imposition of a staffing cap has had very real flowthrough effects for people with disability and those who are caring for them. It has had an effect on the time frames, the quality and the amount of care that is able to be given, and the speed at which goods and services are able to be deployed to those who need them. Arbitrary rejections of participants needing wheelchairs and hoists are rife in the scheme, as are participants waiting for more than a year to get these simple but life-changing assistive technologies. As the NDIS is being rolled out, people are falling through the cracks. I'm in an area that was part of a national trial site, so I am more than three years ahead of many parts of the nation. In Newcastle, we see much of what is about to happen for others in the nation. There has been very consistent feedback from NDIS participants, providers and carers and state and territory governments about the very poor implementation that is happening now.
I would like to raise the case of a young woman, Casey Miller, 29 years old, who came to see me in my electorate office during the parliamentary sitting break. Back in 2013, when she was 23 years of age, she was diagnosed with a brain tumour due to treatment that she required when she acquired a brain injury. Devastatingly, Casey's latest prognosis is that her cancer is terminal and that she only has six to nine months to live. She no longer lives in Newcastle—in fact, she lives in the electorate of Lyne. I am writing to her now local member, Dr Gillespie, the member for Lyne, hoping that he will meet with Casey, because in the very limited amount of time that Casey has to live she is having enormous issues with the NDIS which need speedy resolution.
Casey has also put her mind to developing a proposal for housing that would ensure that people are no longer inappropriately housed in nursing homes. So often young brain-injury sufferers like Casey end up in aged-care facilities. She rightly says that that's not on. She has dedicated her time to developing this proposal around appropriate housing, yet she has entered the private rental system in the electorate of Lyne. She is trying to get some modifications to a bathroom so that she can have some dignity in the personal care that she requires in the remaining six to nine months that she has to live. I can't tell you the trauma that she is going through in order to get what most of us in this chamber would regard as a fairly basic right, to be able to attend to her own personal hygiene, to have a bathroom that is accessible in the remaining days that she has to live, to help improve her quality of life. At the NDIS she has faced obstacle after obstacle. I hope that the member for Lyne will meet with Casey, take up her case and ensure that she gets the bathroom modifications that are required to provide some dignity in her life.
On that note, we on this side of the chamber also note that some important issues around transport plans and respite were not considered at the last Council of Australian Governments Disability Reform Council. These are red-hot issues for people with disability, and I look forward to ensuring that the minister takes them up and follows through on his word to do so.