Tuesday, 11 May 2021
Questions without Notice: Take Note of Answers
Danher, Mr Liam
That the Senate take note of the answer given by the Minister for the National Disability Insurance Scheme (Senator Reynolds) to a question without notice asked by Senator Kitching today relating to the death of Mr Liam Danher and the National Disability Insurance Scheme.
Firstly, I'd like to say thank God we've got Minister Reynolds, because the former minister, Stuart Robert, the member for Fadden, had about as much compassion as a typical member of the Gold Coast white shoe brigade and should never have been in this portfolio.
Let's talk about Liam Danher. On 5 February this year Liam Danher, a 23-year-old man with a severe intellectual disability, autism and epilepsy, died of a seizure in his sleep while his parents were sleeping in the next room. Stop and imagine that for a moment: your beloved son, 23 years old, sleeping in the room next door, dies overnight. Why did he die? Because the National Disability Insurance Agency had given him the run-around for 18 months at the AAT and would not buy him a seizure mat, which would have indicated, by giving an alarm, when Liam Danher was suffering a fit. Liam's parents have said that their son's death could have been avoided if he had been provided with this seizure mat. This Cairns couple said that for two years they felt increasingly cut out of the care of their son as he moved from a state run service to the National Disability Insurance Scheme. Last July, with the Danhers increasingly worried their son might be having rare night-time seizures, his neurologist recommended purchase of the $445 mat which would detect a seizure and sound an alarm. The seizure mat was recommended by three of Liam's own treating professionals, including a neurologist, as well as his independent assessor and the agency itself—the same agency used to try to deny his appeal at the AAT.
Over the course of the 18-month appeal, the NDIA should have amended Liam's plan to include assistive technology funding so he could access the life-saving seizure mat. That's the point: it would have been life saving; it would have saved his life. This was an entirely avoidable death. What did the NDIA do instead of purchasing a $445 seizure mat? They used taxpayers' money to engage lawyers and barristers to assist in the trial, which went for 18 months, while Liam was unable to access legal aid, and the NDIA—wait for this—stopped his parents from representing him. It is disgraceful. The NDIA also flew an independent assessor to the family in Cairns to assess Liam as part of the AAT process. As if the trauma of losing a child to a preventable cause were not enough, the NDIA then contacted the family support coordinator, a week after Liam's death, requesting quotes for the seizure mat. You can imagine how upset the family was. Liam's mum, Tracy Danher, in her letter, which I'll seek to table, has said: 'It was just so distressing to receive that email. We had been waiting every day for that mat to be delivered.'
Pause for a moment and imagine that, just for a minute. How do the people at the NDIA sleep at night? I think that would be beyond most people's ken. To add insult to injury, the NDIA has still not contacted the family to offer an apology or even an acknowledgement of their son's passing, a fact which obviously Liam's parents find upsetting and cold. The minister has said in this chamber that she has apologised, but it seems unclear as to whether she was doing that in the chamber or had apologised when she had contact with Liam's father. I do hope those responsible at the NDIA and the minister are able to accept that a grave injustice has been perpetrated here and then find it within themselves to apologise to that grieving family in person—not only in the chamber but to the family—for the loss of that family's son due to an entirely avoidable bureaucratic nightmare.
Liam is of course the fourth NDIS participant who has recently died due to NDIS neglect and delay. I'm going to run through the other deaths quickly. Tim Rubenach died waiting for the NDIS to provide him with a safe wheelchair. Ann Marie Smith, who suffered septic shock, multiple organ failure, severe pressure sores, malnutrition and issues connected with her cerebral palsy, died sitting in her own faeces. David Harris died after his mental health supports were cut off by the NDIA. He was found dead in his Parramatta unit two months later by the police. I would ask the minister: what have the NDIA, the NDIS and the Quality and Safeguards Commission done? (Time expired)
I rise to speak to the motion moved by Senator Kitching to take note of answers to questions on the NDIS. As has been said by Senator Kitching and Senator Reynolds, the death of anyone and the death of any child is a great tragedy and not something that we want to see—particularly if it could have been avoided. We're all touched by this; we're all affected by this—none more so, of course, than his family and friends. I think we just have to acknowledge that it's not something we want; it's not something we'd ever seek; it's something that we're all incredibly saddened by and sorry for.
Having said that, talking down the NDIS is something that Labor does very often, very frequently, and very well. They're very, very happy to go on the attack—over what is, fundamentally, a scheme that this government should be incredibly proud of and a scheme that Australia should be incredibly proud of. There are not many countries around the world that have schemes equivalent to this. It's a very, very good safety net. It provides very, very good care for a lot of Australians.
Yes, it is tragic when someone on the NDIS passes away. It is very tragic and it's something that we want to avoid and not see occur. But I would ask those on the other side: how many lives has this scheme saved? How many lives has it improved the quality of—the lives of not just the people on the scheme but of their families? How much good has it contributed to Australian society? They can't bring themselves to acknowledge that, because it is not their scheme; it is our scheme. They can't bring themselves to acknowledge how well we administer this scheme. Yes, occasionally, something goes wrong—as, occasionally, something can go wrong in anything at all. Occasionally, things go wrong in medicine. Occasionally, things go wrong in aviation. Occasionally, things go wrong on our roads. Sometimes, these things are avoidable; sometimes, they may not be avoidable. But those sitting over there are knocking this whole scheme, for one tragedy. This is a tragedy—an absolute tragedy. But just sitting there and knocking a whole scheme that, overall, this government administers for the benefit of Australians, and, generally, for the great benefit of Australians, is just counterproductive.
Look at how much money this government spends on this scheme, and ask: how much money would they be spending on the scheme? They would be spending unlimited amounts, because they know how to spend; they don't know how to stop spending. So, yes, it would be great: give every person on the NDIS $10 million—fantastic! Who's going to pay for it? They don't have anything that's costed. They have no idea what things actually cost to provide. Well, we on this side do. We actually take all Australian taxpayers and all Australians into account, and we recognise that we have to be fiscally responsible, and we provide a scheme that we can actually afford. We provide a scheme that we can have a budget for. We know what it's going to cost and we recognise this.
And, by the way, we have a budget—not that anyone on the other side would know that we're actually handing down a budget tonight. Do you even realise that we're handing down a budget tonight that Australians are concerned about and which is going to affect Australians? You've not asked one question regarding the budget that we will be handing down—a good budget that we will be handing down, that's going to benefit all Australians—because you don't care. You don't care about Australians. You just care about yourselves. You just care about big-noting yourselves and making claims that you cannot live up to—because that's what Labor does. That's all Labor is capable of. (Time expired)
I'm really sad to say that that last contribution made no sense. Senator McMahon has obviously not been listening to the rhetoric coming from her own government. She certainly did not listen to the minister's response here today when the minister said it was fully funded. The scheme is fully funded. The very last thing—and it's very important that these matters be put straight—that the Labor Party would ever do is to talk down the NDIS. The Labor Party were the ones who created the NDIS, which is about people with a disability, about participants having reasonable and necessary support and services. That's what the NDIS is about. That's what the ALP created, and what this government has been doing is to create a bureaucratic nightmare where those supports and services are caught up in a convoluted process where either people are being denied those services or they are being delayed.
With the tragic case of the death of Liam Danher, that family had to jump through hoops. They had not one treating professional, not two treating professionals but three treating professionals who all said he needed it. Having said that, the NDIA sent an independent assessor, and what did they say? Yes, he needs it. But unfortunately Liam passed away.
The other thing Senator McMahon said was that we should be listening to the community. Well, she should take some of her own advice. With these new independent assessments that the government is rolling out to save costs, this is what is being said about them: roboplans and tick-a-box assessments. The minister said she's listening. Twenty disability organisations have launched a petition and a campaign against independent assessments. That's what's actually happening out there. Professor Bonyhady called them roboplans. We've had comment after comment from participants calling the process dehumanising. Is that really what you want your legacy to be? Is that really what this government wants its legacy on the NDIS to be?
There was a bit of a sigh of relief when the new minister was announced: maybe there would be a reset. Maybe she really would reset. She called a pause to look at the information and the consultation after the trials are completed. But there's no consultation. The trials are going ahead as they were already envisaged. There's been no change whatsoever. If the minister is listening to this debate, she really needs to go back to the drawing board, because what we have seen is that nearly every witness giving evidence to the NDIS joint standing committee has asked for the independent assessment trials to be scrapped and for the government to go back to the drawing board and have a proper look at any of the issues.
We know this government has been talking down the NDIS and talking about sustainability. When they first came out with the independent assessments, they talked about fairness. That wasn't washing with the participants nor the advocates nor the organisations in the disability sector, so now they talk about sustainability. But, of course, we know that the forecast on the cost of the NDIS was forecast four years ago. But here they are now coming out to say that somehow it's not sustainable. Well, four years ago— (Time expired)
Opposition senators interjecting—
Rather than being interjected against by those opposite, I would rather express the sympathies of this government to that family—but feel free to interject into those sympathies your own if you would like, Senator. Out of respect for that family, I don't think we should trawl through that individual case here in this place because all that seeks to do is politicise it. If you like, I can bring up plenty of ways to politicise some of the comments of your ex-leader. As the newspapers showed on the weekend, he allegedly called people who worked for the NDIS 'Oompa Loompas'. What sort of disrespect is that? That is awful. If that is the way one of your leaders talks about the NDIS and its workers, you should be disgusted. On this side, we are disgusted by any talk like that; it is awful. We're justifiably proud of the NDIS and the work we have put into it. That is why we—
Senator Keneally interjecting—
Would you like to call them a name too?
Thank you, Deputy President. We are justifiably proud of the NDIS and that is why we have committed an additional $13.2 billion until 2023-24 for disability support under the NDIS. This is in addition to the extra $3.9 billion included in the 2020-21 budget and bringing the total extra federal government NDIS funding up to $17.1 billion. Need I remind those opposite that tonight the Treasurer will hand down the budget, and I am sure he will have more to say on that.
It is fair to say that the NDIS has grown at a rate well beyond any initial projections. In its 2011 report, the Productivity Commission estimated that the NDIS would support 411,000 Australians and it would have a gross cost of $13.6 billion. We know 450,000 participants are now receiving NDIS support and it is projected that 530,000 Australians will access the scheme, with costs estimated to exceed $26 billion in 2021-22.
The Australian government is committed to delivering on the promise of the NDIS—that is, to provide people with a permanent and significant disability with true choice and control over flexible support packages to achieve their goals. The government is very serious about listening to the concerns raised by people with disability, their families and organisations around the country that support them before making any decision on proposed reforms in the shape of any draft legislation. It is fair to say that, since becoming the minister for the NDIS, Senator Reynolds has been consulting extensively with the disability sector, its participants and providers and state and territory disability ministers and will continue to do so. Those proposed reforms for the NDIS build on the Productivity Commission's original design for the NDIS as well as recommendations of other reviews and inquiries, particularly the 2019 independent review of the National Disability Insurance Scheme Act 2013—what was known as the Tune review.
The key aspect of the proposed reforms is the introduction of independent assessments to inform access and planning decisions, including the setting of a personalised budget. In April 2021 all governments discussed the shape of these reforms and key concerns that have been raised by the sector. This meeting, just last month, affirmed all governments have a shared vision and commitment to the promise of the NDIS. All governments have also agreed on the importance of further consultation occurring and having further conversations in July 2021, before any decisions are made. The government appreciates that participants and the disability community have concerns about these proposed improvements, and it is a lot of change. It is necessary to set up the NDIS for the future, so decisions on the reforms will be finalised following further consultation with the sector and evaluation of the current independent assessment trials. Thank you.
I also rise to take note of answers given by Senator Ruston on the NDIS. As we know from the debate in this place this afternoon, Liam Danher died of a seizure due to a lack of a seizure mat that would have alerted his parents to the fact that he was having a seizure so that they could intervene, as they had done in many instances in the past when he had had previous seizures. I want to place on record today my personal condolences to Liam's parents. Kevin and Tracy, I want to thank you in particular for your advocacy around this issue. At a time of grief and anger, you have been able to turn this into advocacy so that other people, I hope, do not have to suffer these injustices and traumas through the NDIS. For that I am deeply grateful.
I am also very concerned by this government's continuing use of so-called respect for privacy as a cover-all for every instance where people want to take their issues up in parliament and have their parliamentarians raise them. Time after time, this government simply hides out of respect for privacy or respect for the people concerned. The simple fact is that the parents of Liam want to be able to highlight how the system has failed their son. We know, as we dig deeper into the issue, that there might be deeper reasons as to why the government might want to gloss over these issues. The National Disability Insurance Agency's Martin Hoffman said at estimates that Liam's death was 'a complicated and terrible situation'. What is that designed to mask over?
We know that this young man died for want of a seizure mat that would have alerted his parents so that they could have rolled him into the correct position during a seizure so that he would not have needlessly suffocated. What we also know about this indeed complicated case is that the NDIA was fighting Liam's parents with regard to other elements of his care. In the past, under the previous system, they had been his primary carers and they had been paid as carers under that previous scheme. I would hate to think that a bureaucratic debate over the care arrangements and who under the scheme should be caring for Liam—I would have hoped that the scheme could adequately recognise that Liam was best cared for by his parents, as was evidently the case but for want of this mat—wasn't the issue being complicated in amongst this request for a simple mat. It had been advocated for and requested by a number of other specialists and professionals that had sought for Liam to have access to that mat so that his parents could be alerted during a seizure.
We know one of the key failings in the current assessment scheme and one of the concerns with this bureaucratic recasting of how disability is assessed is the fact that people's needs change. Their disabilities change. Liam's parents were evidently concerned that their son might be having more seizures. How were they supposed to find that out if these seizures happened at night when everyone was asleep? They were debating with the NDIA: 'How many seizures is he having? Do we really know? Do we really think he needs this mat?'
These are evidently very difficult issues, but they are also simple issues. We need a system that can respond to individual needs, as the NDIA is supposed to. We don't want to get bogged down by bureaucracy and legal fees when it comes to meeting the immediate and, as evidenced in this case, urgent needs of participants in the scheme.
Question agreed to.