Deborah O'Neill (NSW, Australian Labor Party) Share this | Hansard source

I rise today to make some commentary, in addition to that from those senators who have preceded me, on the National Disability Insurance Scheme Amendment (Improving Supports for At Risk Participants) Bill 2021. I will just reflect on Senator Hanson's comments—I'm not sure if she's still listening in—about the need for an individual story to enliven our imagination about what the NDIS is and isn't delivering. The constant struggle for a party of government—such as the Labor Party and those in government currently, the Liberal-National Party coalition—is to make the system actually meet the reality of human beings. The power of story in enlivening the imagination of the nation is something that we really need to be mindful of, because systems should serve people, not force people to comply with them.

This particular bill is aimed at addressing several of the recommendations of the very important Robertson review into the heartbreaking death of Ann-Marie Smith, an Adelaide women. I acknowledge the presence in the chamber of my colleague from the great state of South Australia—not as great as New South Wales, of course—Senator Farrell. I'm sure that he is very much apprised of the kind of life that Ann-Marie Smith would have been living as an Adelaide woman who sadly, as all of Australia now knows, died a horrific death after being left in a cane chair for a whole year. She died in a state of complete and abject neglect. I really want to acknowledge the dedication of my colleague in the other place the Hon. Bill Shorten, former leader of the Labor Party, to unearthing this story and making sure it came to public attention in his active support for the NDIS, which accords so strongly with the Labor values of never leaving one of our fellow Australians behind and of lifting everybody up. That is where the heart of this piece of legislation comes from—the acknowledgement of that individual's sad passing and her demise at the hands of a system in Australia that should have enabled her to live a better life but ultimately took her life. Let me be clear: no-one should ever perish as Ann Marie Smith did. No-one should slip through the cracks of society like that and die alone in pain and squalor.

This bill before us attempts to rectify some of those issues, but, as many of my colleagues have already indicated, we believe this bill should go much further than it does in the protection of at-risk NDIS participants. As we have seen with this government, there'll be an announcement about support for reports, and then you have to look at the fine detail of what is really going on. This is yet another example of the song and dance from the Liberal-National Party government, who have now had three iterations over eight years. In 2013, they stood up and said, 'We support the NDIS,' but over the period of their government they have failed to enable proper governance of this important part of Australian society.

This bill, in response to the Robertson review, implements only recommendations 1, 6, 7, 8 and 9 of the review. It's good that that is happening, but there are a few numbers missing in between. The recommendations that are being addressed in this bill are about ensuring that no-one ever suffers what Ann-Marie suffered and that all Australians, no matter how God created them, are able to live lives of dignity and safety, with the safety net that the NDIS is determined to provide.

The NDIS, I am proud to say, is one of Labor's greatest achievements, the crowning glory of the Gillard government. I recall, from my time as the member for Robertson in the other place, the celebration about what this potentially could deliver for people with a disability, who had for too long been sidelined and whose needs were ignored in this incredibly wealthy country that we call home.

The NDIS was slow to roll out but now services nearly 300,000 Australians. It helps them to live lives of fulfillment and dignity. But it needs reform. The sad reality is that the NDIS has been neglected and attacked by this Liberal-National government. They have inexplicably capped staff at the NDIA at 3,000 people. They also tried to cut $2 billion from the budget in 2016. Most recently they tried to ram through a process called 'independent assessments', which sounds innocuous enough when you look at it from a system point of view, but it was explicitly designed to cut costs via the method of cutting services to NDIS participants. Instead of establishing what the needs of an individual person are, which is at the heart of the NDIS, this was about saying, 'Give them all the same package and then just add a bit here and take it a bit there.' That is fundamentally flawed. People with disability are as unique and individual and have as varied needs as every person without a disability. There's no formula that you can ethically apply to the uniqueness of an individual person, and that is the genius of what's at the heart of the NDIS.

What the government were trying to do in that most recent attack was prop up the budget to help themselves get some sort of slogan for an election to keep themselves elected. But they were doing it by robodebting Australians who have a disability. It says everything about what's wrong with this government and its priorities and the people who they deem worthy of service and those who they deem should just take their turn and get what they're given graciously, even if that's way below what they need to survive.

I say to those listening to this debate this evening that the NDIS is not, and should not be, a political football. It can't be conceived of as a bank of savings that you make cuts to. This is about people, often with a degree of advocacy that might be contained because of their particular disabilities. The services of the NDIS are vital to the lifestyles and the dignity of all of its participants. We don't need, as in the words of the current minister, to get rid of natural empathy in the system. Minister Reynolds actually said that—'We need to get rid of natural empathy'—as if to care for a fellow human being is a flaw. Are we so incapable of designing a system that enables the proper care of people with disability that we've got to get rid of our empathy? That is absolutely, profoundly misguided. We need more empathy for one another. We certainly should expect more empathy from this government, more support and more services delivered efficiently, effectively, justly and with kindness to the people of Australia.

The bill addresses several of the recommendations of the Robertson review. It legislates a better exchange of information between the National Disability Insurance Agency and the NDIS Quality and Safeguards Commission, covering recommendations 1, 5, 7 and 9, as well as the disclosure of information to relevant state and territory bodies, which is recommendation 8. However, I do note that it was drafted without sufficient consultation with the sector or persons with disabilities. I mean, what would they know about what they need! A person with a disability surely is an expert in their own experience? Yet this government saw fit to proceed without proper consultation.

Let's be clear about what the NDIS was conceived as and against which standard it must always be considered: it's person centric in its approach, not system centric. I urge the government to conduct a more fulsome consultation on all future legislation in this space. This continuous failure to consult people with disability is glaring. I urge the government to engage with the sector and advocates in an empowering way to hear the voices of their knowledge, insight and wisdom rather than in a paternalistic way that serves the system over the people it's meant to serve. More specifically, the bill also clarifies the scope of reportable incidents and strengthens banning orders to ensure that those who have shown themselves unfit for the care of NDIS participants can never work in the sector again, and that means proper investment in record keeping and seamless coordination across the federation.

What this bill doesn't address is recommendation 2, and that's that vulnerable NDIS participants should have multiple carers so that the lives of these at-risk Australians are not held in one person's hand. That is not to indicate that there should be so many carers that no-one takes responsibility, which is sadly what can happen when you have a race to the bottom and you are just providing people with insecure work and they just shift around from place to place as the cheapest provider gets the job. We cannot descend into that, but there must be sufficient scrutiny provided by a range of carers to ensure people's health and wellbeing is at the core of anything that goes on and that they are properly cared for.

This bill also doesn't address Robertson's recommendation 3, and that was that vulnerable NDIS participants should have a specific person with overall responsibility for that participant's safety and wellbeing. Well, that's just commonsense. We all have somebody that we sign up as the person to be contacted if we are ever in an incident—the alarm on your phone, the indication that this is the person you should talk to: 'If there's anything wrong with me, you should check with this person.' It's just standard operating business for us. It should be happening for people with disabilities, but this government couldn't even be bothered to put that in the legislation. It's clear to me that an individual should be clearly identified by name and ideally introduced in person to the vulnerable NDIS participant and provide them with the care that they need. But, for whatever reason this government, which has so failed participants in our society who need the support of the NDIS, has deemed this important recommendation not worthy of their action.

Other recommendations that are ignored include recommendation 4, which suggests that a national commission creates an equivalent to state and territory based community visitor schemes to provide an individual face-to-face contact with vulnerable NDIS participants. And, aside from protecting the participants, this will give them regular socialisation and friendly faces. I'm sure it will do wonders for the participants' mental health, whether they're the receivers or the givers. In the end, what happens in relationships is we forget who is receiving and who is giving. That is really acknowledging the genuine equality of every human person and that disability is just another form of difference that we seek to embrace rather than position as something that sits outside our society, that's a burden rather than a natural part of the diversity of life that comes into being here on this great planet that we live on.

Recommendation 5 also urges the commission to conduct random check-ins and face-to-face assessments of vulnerable participants. That's just commonsense, but not to this government that chose to ignore it.

In light of sector criticism regarding the privacy provisions of the bill, Labor will move amendments to legislate a requirement for the commission to establish a process for the disclosure of information, as outlined by AFDO, and a sunset clause that treats the bill as an emergency measure by providing that amendments cease to take effect unless the government actually reports back to parliament after the conclusion of the safeguarding review in order to have the amendments re-approved by the parliament. This is like a brake and a check on a government.

If the government is really serious about protecting the lives and privacy rights of NDIS participants, then I urge them to support the amendments. Labor understands the genuine concerns of the sector and that their sensible recommendations should not go unheard. Labor is standing for this sector and for people ignored by this government.

In closing, I just want to acknowledge the amazing work of Save Our Sons, who are powerful advocates for young boys, in particular, who suffer the Duchenne muscular dystrophy disorder. I want to acknowledge the leadership in New South Wales of Graeme Kelly OAM, the president of the USU, who has adopted Save Our Sons as the charity that the union supports. I met young mums who had three little boys under the age of five, the first diagnosed at the age of five and the following two siblings also diagnosed with Duchenne. These are the families who need an NDIS to support them, and they deserve better than this bill.