Richard Colbeck (Tasmania, Liberal Party) | Link to this | Hansard source

The committee is considering the amendments on sheet 3832, moved by Senator Steele-John.

Jordon Steele-John (WA, Australian Greens) | Link to this | Hansard source

Here we are at the end of the road after one of the most brilliant, dedicated, energised, activated, connected, powerful campaigns that have been run by disabled people across the country—this great collective effort that we have been engaged in as a community. We come at last to the end of the road. We as disabled people are often born into a world that is not built for our bodies or our minds. We are made to feel like we are lesser and other. Often our interactions with government and people in power reinforce that. Sometimes we believe that ourselves. It is the work of every disabled person, throughout our lives, to push back on, to extract from, to free ourselves from that internalised belief and to move into our identity as disabled people.

Across the decades in Australia and across the world, there have been different words used to provide description for what community looks like when it's built in this way. What we talk about at this moment, in this time, is disability pride. As we come, in this moment, to the end of this road, I am filled with pride in my community and in the work that we have done together to push back on this bill, to provide evidence to the government as to the harm that it may do and the harm that it will do, to share our lived experience and our expertise, and to organise together in defence of our rights and of our friends. 4,500 or more of us gave evidence to the Senate inquiry. So many of us took time, effort, energy and emotional labour to give testimony, with everything else we had on our plate, or to organise rallies online forums to get the word out, to organise, to connect together.

We did such a good job. We have so much to be proud of. Disability pride drove us on. Disability justice was our goal. 'To leave no body or mind behind' were the words that bound us together, lifted us up and gave us power. People have connected and organised during the course of this campaign in ways that we have not seen before but will see again. The result of our pressure and our advocacy together has been, and is now in this moment, amendments to this legislation which we as a community have a right to claim as the result of our work.

The bill remains an existential danger to our lives and safety—that is not in dispute—but, as we come to the close of this debate, it is important to recognise that our effort and energy has borne fruit. Because of the work we have done together, we have been able to secure improvements to this bill. There is now to be an appeals pathway so that for the larger scale cuts that may be imposed by a minister, should they have impacts on the safety of participants, those participants can flag that and potentially find a way to have them reversed. There is a clearer definition of parental responsibility, recognising disability supports are different from ordinary responsibilities. There are whistleblower protections now within this legislation for people who report fraud to the NDIS. We have stronger protections around debts that can be raised by the NDIS, and there are expanded rights for reassessments from the NDIA. All of these things are the results of our collective pressure together. Every single one of them is a credit to the disability community and to our campaigning together.

I want to thank and I want to honour every single person that got involved with the Protect Our NDIS Alliance and Disabled People Against Cuts. You did so well. You did us so proud. I want to thank my team, who have worked so diligently with me for so long to fight this bill and get what improvements there were to be made and to raise alarm where it needed to be raised. Every day I get to come to work alongside some of the most brilliant people I've ever met, and I am grateful for it every single day. To every person out there right now feeling the heaviness of this moment, the toughness of this moment, know that we are not alone and that there is power in our community. And, though this bill is about to pass—and will pass—this parliament, our power does not pass away. It will continue to build among our community. We will put our arms around each other and support each other. We will ensure that the impacts of this legislation are laid at the doors of those responsible. We will continue to fight together and grow together and laugh together and build community and power together—because we fought these buggers so well.

A lot of people in this place thought this legislation would be easy work. We proved them wrong. We won time for additional scrutiny, for additional voices to be heard and for improvements to be made. That is something to be so proud of. And now we move forward together to the next opportunity to advance the rights of disabled people and our families, to move us closer to a community based on inclusion where things like consultation and co-design are not optional extras but things that government either does or pays an electoral price. In that spirit, I ask the minister: will the disability community be consulted on the implementation of these changes?

Jenny McAllister (NSW, Australian Labor Party, Minister for the National Disability Insurance Scheme) | Link to this | Hansard source

Thank you, Senator Steele-John, for your question. May I also acknowledge the contribution you've made just now, which responds to the continuing energy, organisation and campaigning that the disability community brings to the work of making the world a more inclusive place. We have appreciated very much our engagement with disability activists over the period since Minister Butler spoke at the Press Club about our plans to reform the scheme. We know that this is a challenging conversation for many people. We approach this very clear about our view, which is that this is a valuable scheme, an important one, and one that was fought for by disabled people. We want to do everything we can to make sure that it is sustainable and here for the long term.

Whilst we recognise that not all people within the disability community agree with the approach we have adopted, we are grateful for their engagement and the genuinely important information, feedback and suggestions that they have provided to us about operationalising these reforms in the best possible way. People have been generous with their time. You mentioned, Senator Steele-John, the amendments that have been circulated by the government that respond to some of that feedback. There are 33 amendments that have been circulated, and they include a range of changes which respond very directly to the feedback we received from the community.

I wanted to speak particularly about the escalation pathway that you referred to. Senators will know that we have been clear that we wish to safeguard against risk to participant health and safety. We've previously confirmed that participants requiring continuous 24/7 supports will continue to have these provided at all times. I know this was something you also were interested in, Senator Steele-John, and you indeed drafted an amendment which suggested an escalation pathway in support of that objective. You were kind enough to share that with Minister Butler's team, and that provided us with some very useful insights, which we have sought to build upon in the amendments that we have circulated. There are other amendments which I think respond to evidence we've received but are also aligned with areas where you did policy work, and we thank you for your engagement.

Your question goes to what happens now in terms of working with the disability community. Much of the architecture of this bill is a beginning rather than an end. For example, the bill establishes a clearer eligibility test for access. We've been very clear we wish to work with the disability community on how best to enact these provisions. Senators will know that we have established a technical advisory group to advise us on those thresholds. You should also know that that technical advisory work is working closely with the reform advisory committee, led by El Gibbs and Dougie Herd, and they are supported in turn by a range of excellent representatives from states and territories. We want the disability community involved in this work and thinking about this work. To that end, I did want to provide some reassurances to participants who might be worried about how these new access arrangements will work.

The first thing to know is that these arrangements will begin in January 2028. We do have time to work through this with the experts and with the disability community to make sure that we do put in place a fair and transparent way of establishing access. From January 2028, participants will begin to go through prospective functional capacity assessment—new participants on entry, and existing participants will be reassessed over time. As part of this, participants will be required to meet the definition of 'substantially reduced functional capacity' and other access changes as set out in this bill. It will mean demonstrating that you have access treatment that is likely to materially improve or alleviate the impact of the impairment through treatment, but those treatments must be ones that are regularly undertaken or publicly funded through the Medicare Benefits Schedule, the PBS and public hospitals, and I referred to this earlier.

The amendment we moved in the House means that, once you have established your eligibility under the new definition, you will not be required to retest eligibility through different planning cycles. I want to be clear about this, as I was earlier. This is about establishing a simpler, fairer assessment process to return the scheme to its original intent of supporting people with permanent and significant disability. This will mean more streamlined processes and a reduced administrative burden on people who are seeking to test their access to the scheme and for people who are already participants.

I look forward to the work of the technical advisory group and also the involvement of disabled people in a whole range of other areas where we will be seeking their involvement and advice. The government intends to consult on changes to the way that we organise supported independent living. This is an area of service provision where we consider the quality could be improved, where we're concerned about sharp practice and where we are interested to understand whether a commissioning approach could deliver choice, control and improved quality.

We will be interested in the views of the disability community in supporting implementation arrangements for an inclusive communities fund—resources to ensure that community clubs or groups' activities that are so important in the life of any community member are actually genuinely inclusive, welcoming and accessible for people with disability. We will want to hear from the disability community about the approach we intend to take to plan management and the approach we intend to take to support coordination. Of course, we are already working closely with disabled people on putting in place the new framework planning, as recommended by the independent review—a fairer, more transparent, more consistent way of providing resources to people with disability at the planning phase of their journey through the NDIS.

It's a reform agenda that will unfold over time, and we will be drawing on the insights and the public spirit of those many people in the disability community who advocated in the first place for the NDIS and continue to advocate for its success. I want to reassure the disability community that the government fully intends to honour our obligations to work closely with you through the implementation of these reforms through the coming years.

I'm conscious that there are other senators who may wish to move amendments or make a contribution, Senator Steele-John. Should you be ready for a vote to take place on the amendment that you have moved, let us know.

Jordon Steele-John (WA, Australian Greens) | Link to this | Hansard source

I thank the minister for her contribution. As we're short on time and I don't wish to waste the time that we do have on divisions, with the indulgence of the chamber, I will speak to some of my other amendments beyond the one that I have already moved if that is okay. Thank you.

It is important during this debate for me to name something, and that is that disabled people are not a burden. Let me say that again. Disabled people are not a burden. We should never, ever be made to feel as though we are a burden by our government or by the society that we live in. I say that because many people, during the course of this debate, while the government has been trying to push this legislation through, have shared with me that they have felt as though they are being talked about in a way that leaves them feeling like a burden, and that is just not okay. I've had people come up to me and say: 'I have been abused in the street. Somebody came up to me and said, "You're those people that are ripping off the NDIS."' People have been left traumatised and in tears, and that's not okay.

Regardless of what might live in the heart of any particular MP, we have to acknowledge that this legislation, the focus of this Labor government in pushing this legislation and the way that disabled people and our families have been talked about have contributed to discrimination and a feeling of burden in the community. This conversation about this legislation has been focused on financial burden. How many times have disabled people had to listen to politicians talk about how financially unsustainable the NDIS is? Again and again—while watching the parliament, at the behest of the government and supported by the opposition, not only letting the gas exporters off the hook but also continuing to sign us up to the AUKUS military agreement—some $368 billion on nuclear submarines—and bind us to the United States. Yet where is the conversation among the government or the opposition about the sustainability of that? It's not there, and it bloody hurts.

It hurts when you live your life feeling beholden to the goodwill of the government of the day. God, it's hard. And a lot of us had just begun to let a bit of that tension from our bodies go. When you require the support of somebody to do a thing that many people around you can do on their own, that requires a lot of vulnerability from you. When you require the support of a service to develop a skill or when you are in need of support, God, it takes a long time to be able and willing to accept that support, let alone to come to rely on it. Every time you need help and every time you can't do something yourself, many of us have a voice that says: 'You bloody burden. You broken thing.'

It's a personal thing and it's a personal journey for all of us to get out of it. But, for God's sake, the role of government should always be being the bugle calling out to that part of us that rejects those ideas. It should be calling up society to drive out those ideas and building systems that support people to come into their power and their independence and know that they are not a burden, that they matter and that they are equal. Nobody should be sitting in judgement of their support needs, that they need to try harder, do more, take the pain or the ache, or internalise the fear. That should be the role of government in this place.

Disability services are complicated, sure. They are complicated because we live complicated lives. But it would have been really good during the course of this debate if we could have also acknowledged that there is so much good that comes from creating a more inclusive society—moral good, social good and, yes, economic good. I will say it again: for every dollar that is invested in the NDIS, $2.25 is returned to the Australian economy in the form of economic activity. Cutting this scheme in the way the government plans to will cost 56,000 jobs. It will place them upon the shoulders of those family members already near burnout. There will be 94 million hours of additional unpaid care work. That will have huge social and economic impacts. It just will.

The Greens will always continue to champion disability rights in this place and push back against any policy that seeks to treat a disabled person or a family member as a financial burden or to frame them in that way. It's a practice that both parties have engaged with, and it's disgusting. There should be no place for it.

One of the most tangible things we can do is ensure that, when people in positions of power speak about these issues, they speak from a place of informed knowledge of the topic area and don't entrench ideas around mild and moderate types of disability when no such thing exists, talk about conditions in ways that are offensive or suggest that disabled people should be reduced to a budgetary equation.

When people speak in this place, it has an impact, so I want to ask the minister, on behalf of the government, what she would say to a disabled person that has been left feeling not like a person but an inconvenient budget line item by this debate.

Malarndirri McCarthy (NT, Australian Labor Party, Minister for Indigenous Australians) | Link to this | Hansard source

This government is very clear about the value of every Australian, and it's why, as a Labor government, we are proud of previous efforts by the labour movement and previous Labor governments to establish a scheme that is really unparalleled globally to support people with disability to live full and inclusive lives. We want this scheme to be here for the long term, and it's why we have taken the necessary steps to ensure that it retains its social licence.

I want to make this point. Talking about the cost of the NDIS is not the same as talking about the value of disabled people. The disability movement is a proud social movement. It engages questions of identity, of purpose, of belonging and of inclusion. These are big ideas. The NDIS is a government program. It should never be conflated with a community of people or a part of the Australian population, but it is a great human rights achievement. We are committed to maintaining the scheme because of what it means for people with permanent and significant disability.

We have to be able to talk about how it works. We have to be able to have honest conversations with the disability community and with the Australian community when we think things are going wrong. I do think that there are challenges with the scheme that need to be addressed, and we have tried to be upfront and honest about those with the Australian people. We want this scheme to be here for the long term. We want it to work well because we believe in it. We believe in the value that it brings to the lives of disabled people because we've seen it with our own eyes. These reforms are about making this scheme the best it can be and making sure that it is here in the long term.

David Pocock (ACT, Independent) | Link to this | Hansard source

Minister, I know we're running out of time. I do have a few questions. I first wanted to echo a few of the things that Senator Steele-John said. I'd really like to thank Canberrans for their input and guidance in my consideration of this bill. Hearing directly from Canberrans, listening to them, is the most important part of my job. I vote in this place on behalf of them and I've received hundreds of emails and calls to my office about this. I've had many people stop me on the street to talk about it and I held a town hall meeting on this bill that was attended by about a hundred people with disability and their loved ones.

I've heard, very clearly, the genuinely held fears and the uncertainty when it comes to what this bill will mean for the most intimate parts of their lives and what it'll mean for their families. I also heard, very clearly, that people do want reform. People with disability know better than all of us how poor governance, fraud and poor-quality services rob people of dignity and undermine the scheme. I voted for the second reading of this bill because I agree with its intent to reform the scheme, to ensure it is sustainable over the long term and to put it at the government's target growth rate of between five and six per cent. I think we all want this scheme to endure. It should become as foundational in our society as Medicare. That requires sustainability. It requires social licence.

The government has provided quite a long list of amendments, as have the Greens, and I've also introduced a few for discussion and consideration by the Senate. But, as I said in my dissenting report, there are some red lines in this bill for me. The biggest one was the support determinations and the indiscriminate cut of 50 per cent, the minister said, to social and community participation funding. I often hear that, on average, this measure will reset social and community participation funding to where it was a few years ago. I think the word 'average' does a lot of heavy lifting. It conceals that the people who are most at risk of isolation—people in SILS, people with intellectual disability and people with Down syndrome—use most of their SCCP funding. For them, a cut of 50 per cent will mean a lot for their lives.

I take the evidence of the Disability Discrimination Commissioner, Women with Disabilities Australia and the many witnesses at the inquiry and I thank the Senate for facilitating a longer inquiry into this. We heard that this will leave people in unsafe situations because it risks isolating them. We know that isolation increases the risks of violence, abuse and exploitation, and social and community participation is an essential safeguard against this. The indiscriminate nature of this cut means that we will not know its impact until harm happens, and I can't support that. Based on what I've heard from Canberrans, that is something that I cannot support, even though I support the intent of these reforms.

Minister, I note that this concern was raised by Senator Steele-John earlier. I heard your response and I understand the government's point of view. I'll leave it to you if you want to respond again to what I've just said, but I do have some specific questions, so I'll just move on to them. I've heard from lots of people in the community about how support determination will impact them. The Disability Discrimination Commissioner shared in the inquiry that she believed a cut of this magnitude across all plans would leave people in unsafe situations. Can I ask how the government will actively assess whether this policy is leaving people in unsafe situations, and how the government plans to respond if we do see more people being isolated and exposed to violence or exploitation.

Jenny McAllister (NSW, Australian Labor Party, Minister for the National Disability Insurance Scheme) | Link to this | Hansard source

Thank you, Senator Pocock, for the question. We have been speaking about this a little through the course of the committee stage. As you know, spending on social and community participation has grown very rapidly in recent years, and faster than other parts of the scheme. We are conscious that we do need to take steps to rein in growth in some support categories. We've thought carefully about the way to do that that will be safe and will allow people to meet all of their needs across the scheme. You heard me indicate earlier to the chamber that, amongst the things the minister must consider in making a support determination, he or she must consider safety and must take advice on safety in making such a determination. Total spending on SCCP alone is now $12 billion a year. That's tripled in just five years, and it now costs about the same as what we spend on the entire Pharmaceutical Benefits Scheme. We do think it's an area where we can rein in growth but do it safely.

I spoke at length earlier in the debate about an important safeguard that we are moving as a government amendment and the conversations that we've had in bringing that amendment to this chamber. I won't go over all of it again, but, in short, the safeguards will mean that support determinations don't impact supports that are essential to participants' health or safety, and that there is an escalation pathway where a person who requires continuous, 24/7 support is able to engage the agency. There are, of course, all of the existing mechanisms that are in place under existing arrangements for the CEO to vary a plan or for a participant to request a review of their plan when certain conditions are met.

The government will, of course, continue to engage with the disability community. This reform will roll out over time—not just the one we're speaking about but the other elements of the reform too. We will be engaging closely with the disability community to understand how those reforms land and, of course, to do further work to co-design elements that are signalled here in the legislation but not yet enacted.

David Pocock (ACT, Independent) | Link to this | Hansard source

Thank you. Minister. I have two further questions. I might just ask them both, given how across things you are, and then you could respond to both rather than chewing up the time of the Senate.

The first one is on reassessments. I'm trying to understand whether a person who turns 65 over the next five years and who will be reassessed against the new eligibility criteria will be removed from the NDIS. A quick case study to flesh it out a little bit: I've got a constituent, a Canberran, whose father is 63. The father, unfortunately, lives with severe early onset dementia. He lives in SIL with two others and requires significant help with activities of daily living. Over the next couple of years, this man will obviously turn 65. If he is reassessed under the new eligibility criteria in that time, will he be exited from the NDIS or will he continue on the NDIS if he meets the new definition of reduced functional capacity?

The second question, Minister, was on automated decision-making. I understand the perspectives that this strengthens the safeguards around ADM by virtue of adding safeguards, but, reflecting on the evidence tendered by the Human Technology Institute in both the submission and then the evidence under questioning—who were very compelling and described this as unprecedented in Australian law—I'm interested in why the government is doing this, given you are yet to implement recommendation 17.1 and 17.2 of the robodebt royal commission which go exactly to this. We saw the Senate today sent a very clear message on the use of ADM in aged care, raising more concerns about the IAT.

Jenny McAllister (NSW, Australian Labor Party, Minister for the National Disability Insurance Scheme) | Link to this | Hansard source

Thank you, Senator Pocock. You're being very courteous in seeking not to, as you describe it, waste the Senate's time, but I'm very happy to answer questions, and I think the Senate has time for your questions, so I don't think you need to worry so much. On the question around reassessments, the short answer is no. The gentleman in question will need to be reassessed. He will need to demonstrate that he meets the test set out as substantially reduced functional capacity and that it is permanent as described in the act, but the age related criteria will not be a feature of that assessment. All other things being equal, age would not be a matter that would be considered in that reassessment. It's difficult for me to speak about the other elements of the assessment, obviously, not knowing the gentleman in question.

In terms of the use of automation within the scheme, this is an important issue. For the first time, the bill introduces a series of protections and guardrails about the way that automation could be used in the NDIS. We are acutely aware of the failures of robodebt, and we do not intend to repeat the mistakes of past governments. In fact, the safeguards that are in the bill are designed to make it very transparent when automation is being deployed in the scheme and also to put in place a set of criteria that make it obvious how automation is being used in the scheme.

The bill does not allow a computer system to take any subjective action. Any evaluative administrative action must be taken in accordance with a standard operating procedure instrument, a SOPI. That instrument sets out the rules that a computer program must follow when undertaking an evaluative administrative action, and an evaluative administrative action can only be taken in circumstances where clear and objective criteria can be applied. If the circumstances are not objective enough to be assessed by a computer program, the bill requires that the action be taken by a human decision-maker. When making this standard operating procedure instrument, the CEO must be satisfied that this reflects how the CEO would make the decision and that the action is consistent with the NDIS Act and rules.

Further, administrative action can only be taken under designated provisions. There are a limited number of provisions that are designated in the bill that's presently before the Senate. Any new designated provisions, any expansion of that power, would need to be specified by the minister in a disallowable instrument, and so, in specifying new provisions that involve evaluative action, the minister must additionally be satisfied that it is appropriate to do so.

David Pocock (ACT, Independent) | Link to this | Hansard source

I have a follow-up on that. Thank you for the explanation. SOPIs aside, I was interested in the use of algorithms. When it comes to algorithms, the robodebt royal commission said that business rules and algorithms should be made available to enable independent expert scrutiny. Will all the rules and algorithms be made available to enable independent expert scrutiny, and who will undertake this independent expert scrutiny, given this is something that hasn't happened with the algorithm used in the IAT?

Jenny McAllister (NSW, Australian Labor Party, Minister for the National Disability Insurance Scheme) | Link to this | Hansard source

The SOPI will publish a set of business rules that will be able to be examined. As I indicated earlier, they will be a disallowable instrument.

In your earlier question, you asked about the whole-of-government response to automation. You'll be aware, I think, that the Attorney-General is leading the work to contemplate how automation might appropriately be used across the government. However, in this instance, we judge that, in bringing this bill forward, it is an appropriate and indeed necessary time to put some safeguards around the way automation is used in the NDIS. You will know that technology is increasingly used to deliver services; I've heard you speak about this in the past, and I think you would accept that, when it's used properly and well, it can help deliver decisions more quickly, consistently and fairly, and it can free up the skills and judgement of our public servants so they can apply their human judgement to other, more complex questions where human interaction matters the most. We are clear-eyed about the risks. This bill, for the first time in the NDIS context, sets out a set of parameters with significant transparency about where and how automation is being used in the scheme. In the first instance, it sets out a very limited number of circumstances where it would be used.

David Pocock (ACT, Independent) | Link to this | Hansard source

I'm still unclear whether—I don't know how you describe it—the underpinnings of the algorithm will be made available. The government says: 'Of course we'll be transparent. Of course we'll let you know the business rules.' But with the actual algorithm, what we're running into when it comes to Minister Rae and the IAT in aged care, which clearly is not delivering—the whole Senate agrees it's not delivering. When we ask to see the algorithm, we're told, 'No, we can't possibly make that public because then people could game the system, could game the algorithm.' This is exactly what the robodebt royal commission said: you need an expert body that can look at it. Will that be happening? Who will look at the algorithms that are used, and give Australians and the Senate the assurance that they're actually delivering for Australians on the NDIS?

Jenny McAllister (NSW, Australian Labor Party, Minister for the National Disability Insurance Scheme) | Link to this | Hansard source

Before I address this question, I'm not sure whether I spoke correctly earlier and I just want to clarify in case I made a mistake. In specifying new provisions where automation could be applied, the minister will be required to develop a disallowable instrument. A SOPI is not a disallowable instrument; it's a notifiable instrument—so it will be able to be inspected but not disallowed. The expansion of automation to a different area of decision-making within the act would be a disallowable instrument. I just wanted to clarify that for the Senate because I'm not sure I spoke correctly earlier.

This bill makes it clear that the CEO always has the power to override decisions that are taken. It requires the agency to notify a person that an administrative action was taken by a computer program or using a computer program. It requires the agency to publish transparently on the website and in its annual report the kinds of actions that have been taken. It requires, as we've just discussed in terms of the SOPI, the CEO to transparently publish a statement about how any discretionary task would be undertaken, and it only allows an automated decision where the particular decision has either been legislated or specified in an instrument that the parliament can disallow.

These are new and important transparency measures in relation to the use of automation in this scheme. We think it's important. The NDIA needs to use technology, including for some automated administrative actions. The NDIA currently processes more than 660,000 claims each day, and we're seeking to establish a clear legislated framework for safe and reasonable use of automated administrative action in clearly defined circumstances that include safeguards and ongoing human oversight.

Jordon Steele-John (WA, Australian Greens) | Link to this | Hansard source

Neurodivergent kids will be among those most impacted by these changes. There is so much concern right now in the community about what this bill will mean for neurodivergent kids. And that concern is valid because the government have said that they will be moving kids under the age of nine off the NDIS. Instead, there will be these things called foundational supports. Families have asked, 'What is a foundational support?' After literally years of asking this question, there isn't a clear answer. We had a press conference, a Press Club announcement, and the minister said: 'There's a program called Thriving Kids. Here are some ideas I have for what might be in it.' And that was kind of it. There have been working groups and thought papers published, but the reality is that right now we're sitting here and the state of Queensland isn't even yet on board with foundational supports. They're not on board with the idea. Not one state or territory can articulate comprehensively what they'll provide as foundational supports for kids removed from the NDIS, because Thriving Kids is just a tiny cohort.

We heard, again and again, evidence from the department that tens of thousands of kids will be removed from the scheme by these changes. Many of these kids have just started to succeed, grow and learn because of the supports they have been able to access under the NDIS. We have another example of the community being made to feel they're a burden, because we have heard, so much in this debate, that the number of autistic kids on the scheme is 'so much more than we expected' and they're 'a threat to the sustainability of the scheme'. How dare kids have the audacity to be autistic? How dare autistic people have the temerity to exist?

Everybody knew, when we set the NDIS up in the first place, that the figures given by the states and territories on the numbers of disabled people would be guesses at best. Why did we know this? Because they were numbers generated by the very broken systems that the NDIS was replacing. So you could add the fact that the data was incomplete—everybody knew the data was flawed—and that there would be more disabled people than expected and more kids with support needs than expected. So many people have shared with me over the course of this debate that they feel like they are being made to bear the cost of a miscalculation. There are more autistic kids in Australia than was estimated. Do you know what my answer to that is? Good! Neurodivergent kids are great. Autistic kids are great. Kids with ADHD are great. That should be celebrated, embraced and never talked about as a threat to a system. If you set something up and you find out there are more kids in need of support than you thought, the Australian answer should always be: right; how do we get to work to make this work. That's what the answer should be.

Is there a need to provide more support to neurodivergent kids in the classroom? Absolutely. Is there a need to provide neurodivergent teachers in the classroom? Absolutely. Is there more to do to make sure that the states and territories hold up what is still their responsibility to create accessible communities for neurodivergent kids and their families? Absolutely. But that's not what this bill does. This bill recreates and re-establishes the postcode lottery that existed before the NDIS—where you lived determined what you got. That'll impact everybody, and it will have a particular impact for neurodivergent kids and neurodivergent families. Everyone should have known that when they were putting the law together, because it is neurodivergent kids and families who are already falling through the cracks at the highest rates. It is these kids and these families who are already often most close to burnout in stress and distress.

The government's own investigations into the Thriving Kids program stated it really clearly. The government's approach to this and its engagement in this space has been woeful and has caused so much stress and trauma that was unnecessary. We sit here right now and nobody knows what a foundational support is. I spoke to somebody in one of the state based public services on the weekend who was deeply engaged in their state's process of building a foundational support. I said: 'Amazing. Can you tell me what it is? So many people want to know.' They don't know. You've got New South Wales over here doing a commissioning piece. Maybe some of this and some of that will be covered, but that won't be the same as what we will see in Victoria or in WA. There's so much unnecessary stress created by this.

Many people rightly expected that if folks were going to be shifted from the NDIS to a different type of support, that support would exist first before they were shifted. But that's not what this bill does. It gives power and begins the process of removal while there is still no clarity on what people are being removed to. That's where we are right now. From today onwards, the government will have to work to fix it. So I ask this very basic question: can the government guarantee that no autistic or neurodivergent child will be removed from the NDIS before like-for-like foundational supports are established in their state or territory?

Jenny McAllister (NSW, Australian Labor Party, Minister for the National Disability Insurance Scheme) | Link to this | Hansard source

Senator Steele-John, your question suggests that you don't know what foundational supports are or what Thriving Kids is, and I'm surprised that that is the case. There is a very long report from Professor Oberklaid that draws on extensive consultation and engagement with a very broad sector of the community and deep expertise in paediatrics to set up a framework that was adopted nationally for Thriving Kids.

It has four elements. The short version is that a good system that delivers well for kids with developmental delay or autism would include really good information for kids and their families, pathways to access services in their local community, support for parents—because parents are the first teachers of young children—and targeted supports for children who may have additional requirements. It's that model that was adopted by the states and territories. It's that model that underwrites the bilateral agreements that have been signed with all of the states and territories, other than Queensland, and it's those models which are driving and informing the implementation plans that have now been signed by all of the states and territories, except Queensland.

It might be of interest to those listening to this debate to, if you are deeply interested in understanding what the practical implementation arrangements will be, have a look at those bilaterals. They set out the kinds of actions that will be taken in each state and territory and they reflect the thinking that states and territories have done about the specific kinds of circumstances that exist in this very large continental nation, where we see all sorts of communities with quite different needs. It sets out the ways that states and territories actually intend to respond to those needs in making sure that we've got a consistent approach to supporting children that is tailored to the needs of local communities.

States and territories advise that they will be ready to start rolling out supports under Thriving Kids on 1 October. That's really important. There won't be access changes for children until January 2028, so we've got time to stand up a service system that will be ready for children from 2028. It's really important that states and territories who've signed their bilaterals are indicating that they're ready for this 1 October commencement date. These services will be stood up gradually over time towards that 2028 deadline. They won't be like for like, Senator Steele-John. We've made that really clear.

In fact, in initiating this work, we were conscious that the supports that were being provided through the NDIS for children with developmental delay, autism and low to moderate support needs were not necessarily aligned with best practice. It's why we asked Professor Oberklaid to consider these questions. It's why we asked him to work with a very wide range of experts not only to tell us what best practice would look like but, more importantly, to reassure parents what best practice looks like for this cohort of children. We want them to do well. We want parents to be supported. We want them to access supports that are consistent with all of the very good research and information we have about how to support kids.

I'm actually very excited about the kick-off for Thriving Kids in October. I think that there are going to be very important opportunities for families to connect with supports in the natural settings where they already visit, play and learn. There are real opportunities here for our communities. I do think, as I said earlier in this debate, that it's important that we deal with the facts as they are. Change is challenging and frightening. We can face it together, but it's best if we do so on the basis of what is true and what is actually happening.

Raff Ciccone (Victoria, Australian Labor Party) | Link to this | Hansard source

Minister—Senator Steele-John.

Jordon Steele-John (WA, Australian Greens) | Link to this | Hansard source

You nearly made me a minister then, which would've been a hell of a thing!

Raff Ciccone (Victoria, Australian Labor Party) | Link to this | Hansard source

I'd better be careful!

Jordon Steele-John (WA, Australian Greens) | Link to this | Hansard source

It is really important, I think, to acknowledge that, when we talk about this legislation, we need to consider the entirety of the communities impacted by this bill. One of the communities that I'm really worried about are Australians who play a caring role for, alongside and with disabled people, whether that is a paid or an unpaid role. During the course of the community's opportunity to feed back on this legislation, we have heard that this bill is going to be bad for carers. It's going to make life harder for carers. We've got to really engage with that reality because so many people who play caring roles in Australia are close to burnout or are struggling through burnout right now.

Government makes decisions often without thinking about the flow-through impacts on carers. This government, in this bill, will be cutting the supports currently available and currently funded to enable a disabled person to go outside maybe once or twice a week, to get their groceries, to see their family members who might live in another town and to go to the chemist and pick up their medication. If you're a disabled person that needs a support worker to go into the community, without that you can't go out. And what then? Often what then is that somebody who is a family member or a friend takes on the role of trying to support you.

We heard from many carers organisations during the course of the inquiry into this legislation. They drove it home to us clearly. They said carers are already stressed and struggling. They said unpaid care work is disproportionately done by women in Australia. They said that parents are struggling and that many parents who are older have felt the return of the fear that used to haunt the lives of so many. What will happen to my kid, my child, when I'm no longer here? What will that care and support look like? That is a stress that had eased for some Australians because of the establishment of the NDIS, and that stress and strain is now returning. Right towards the end of the inquiry, we got a piece of tangible research from the Australia Institute examining what the flow-through impact of this bill will be for those who play unpaid caring roles alongside disabled people. They found clearly that this bill will transfer 94 million hours of currently funded support work onto the shoulders of the carers of Australia—94 million hours. Just let that sink in.

And the impact doesn't stop at those who play unpaid caring roles; 56,000 people whose paid employment is to be a support worker will lose their jobs because of these cuts. The ripple effects of this will be terrible. The stress that it will create is beyond imagining. It's not beyond description, because it was described in painful detail for the government to absorb and to read. What wasn't talked about in any of the statements from the government that I've seen or in their impact analysis is the way that that stress and strain often tears at the fabric of the relationship between disabled people and our families. This is a very personal thing, but what often happens because the system lets you down, because there isn't the support that you need, is that people in caring roles do become stressed and do begin to burn out. We as disabled people feel and see that. Again, that plays into that internalised idea that we are ourselves a burden to our families, to the people that we love. That is not true.

What happens in those moments is that a weight is borne by the family member—not the weight of disability but the weight of a government system that doesn't fund the support for the family of the disabled person or for the disabled person themselves. The government drops the ball, the disabled person and their family picks it up, and the weight of doing that often leaves the disabled person feeling like they are a burden on their family. That is an awful dynamic to exacerbate. It takes entire lives to unpack the mental health impact of that. It's just so cruel to put people in a situation where they can't be alongside each other. It's just family members. Family is work. Family is work and effort, at times, for all of us. People fall out. There are different views. There are different life stages. That's the human experience—the human experience of disabled people and the broader society, and that's okay. That's living.

But we should never allow that to be added to by family members and carers having to play those caring roles beyond what they can sustain because the system is broken and the system doesn't recognise the work. And that's what this bill does. It fails to recognise the work. It makes the stress and strain worse. So, Minister, what would your government say to a carer or a support worker who tonight just can't figure out where they are going to find additional hours to care for their loved one once your government's cuts have come into effect?

Jenny McAllister (NSW, Australian Labor Party, Minister for the National Disability Insurance Scheme) | Link to this | Hansard source

Senator Steele-John, you mentioned in your remarks the stress and strain that is placed on parents who worry about a day when the NDIS is not here. The implication, of course, in speaking about that circumstance is that this bill will create the circumstances where supports are not there, and nothing could be further from the truth. This bill sets up the NDIS to retain its social licence and to operate in a sustainable way so it is here for the long term. It seeks to address precisely the concerns that you outline—that people should be able to be confident that the NDIS is here for the long term. As the government has argued, we are concerned that, at the moment, the social licence for the scheme is under some pressure. With the possible exception of the Greens political party, I don't think that the community broadly believes that a scheme that will cost $100 billion a year by the middle of next decade is a scheme that is operating sustainably, but that is the path that we are on unless sensible amendments are made to the operation of the scheme to ensure that it works as intended.

The NDIS, after these reforms, will still be here to support families. It will still be the Commonwealth's second-largest social program, after the age pension. Australia will still be spending twice the average OECD expenditure on disability supports. The reforms that are before the parliament are about making sure that these supports are here for people with disability. Of course, we recognise the role that unpaid carers play in supporting people with disability and, really, in the economy overall. It's why we've invested as we have in the National Carer Strategy and in the supports that we offer through the Carer Gateway, which includes counselling, peer support, coaching, tailored support packages, planned and emergency respite, skills courses, information, advice and assistance to navigate other services that can support carers in their caring role.

The proposed amendments are not intended to change the considerations relating to reasonable family care and other supports that are currently reflected in the supports-for-participants rules. Of course, we hope that people with disability will live rich lives embedded in family and community, with kin and with friends. The NDIS was always designed to interact with those informal systems of supports, which we hope are in the lives of all Australians. For children—by children, I mean people who are under 18—who are NDIS participants, parents are expected to provide the level of care and support that would ordinarily be expected for a child of the same age, and, where a child's support needs extend beyond what would be considered age-appropriate parental support due to their disability, those needs can continue to be considered in the context of the child's disability-related support needs and family circumstances.

We will monitor the impact of these reforms. We will continue to listen to community feedback. We will consider the needs of carers through our implementation of the National Carer Strategy. These reforms are all about ensuring that this scheme, in fact, is here to support people with disability and their families for the long term.

Jordon Steele-John (WA, Australian Greens) | Link to this | Hansard source

I want to pay tribute to the allied health professionals who have worked with such determination and showed such awesome solidarity alongside disabled people and our families in the fight against this bill. The allied health workforce is critical to delivering the supports that disabled people need. There's no better evidence of that than the testimony given by the peak bodies for allied health to the inquiry into this legislation. They spoke eloquently, professionally, from a place of deep expertise, and illuminated for the inquiry the risks and dangers of this bill. They pointed us to the fact that a piece of legislation—a key plank of which is the implementation of a functional capacity assessment for access to the scheme—in fact goes on to describe a functional capacity assessment which is not at all in line with what we have ever understood such an assessment to be or, indeed, even understood those words to mean.

I think it was Occupational Therapy Australia that put it quite bluntly. Their profession, they said, feels a deep sense of ownership over the very concept of a functional capacity assessment. In their view, it is their profession who, in the aftermath of the First World War, developed the very first theories and tools of occupational therapy, with the functional capacity assessment at the centre. They were trying to figure out how to enable returned soldiers to live well. This profession very rapidly came to the conclusion—the understanding, as so many disabled people inherently understand—that someone's function and capacity is a result of the interaction between their impairment or their difference and the environment in which they live, the social context in which they exist and the choices that they wish to make. These are the elements which make up a functional capacity assessment by its very definition—environment and social context.

Yet, what do we see in this legislation? Again, they pointed us straight at it. This is a functional capacity assessment which will not be required to take into consideration environment and social context. As Speech Pathology Australia said, 'What are we assessing in speech?' Speech is, by its nature, the result of social context. What would we be doing? The answer seems pretty clear: we would be co-opting the name 'functional capacity assessment' to mask what is actually a process by which a government assesses someone in the narrowest possible terms, attempting to create silos between their co-occurring disabilities, the environment in which they live and the social context in which they exist or may seek to exist for the purpose of reducing the funding they're able to access.

It didn't just end there. Of course, there are tens of thousands of allied health professionals across this country, and many of them are small and medium sized businesses. What government does—what the National Disability Insurance Agency does—in relation to the rates at which these professionals are compensated matters hugely to them. If it isn't done properly, their businesses go bust, their employees are out of jobs and the services they provide communities are unable to be provided.

They warned us. This is something that the Liberal Party should really open their ears to. They warned us that this bill puts too much power in the hands of government to set pricing. Government setting pricing, in some contexts, are things that the Greens have no problem with. But it does surprise me that we're about to see a piece of legislation rammed through that will let a minister in Canberra set the pricing that decides whether or not an Australian small business is able to survive, with the Liberal Party's support. Wow.

There is a better way to do this. One of the amendments we'll vote on later will set out the pathway forward. Pricing should be set by an independent arbiter, by an independent body. The kicker is that the government knows this because Minister Shorten commissioned a piece of research into NDIS pricing, and it came back and it sat on his desk and gathered dust. Everybody knows, though nobody has ever really been able to confirm, that what that report recommended was that there be an independent price-setting entity. Yet this government says no. They want to set pricing in line with their budget expectations, their bean counting, so that they can decide what the prices are, regardless of what that impact might be on the ability for allied health professionals to provide their services to NDIS participants. It is such a risk to give these powers to government in this way and in this sector.

I want to particularly acknowledge that there is a type of courage required by professional peak bodies and organisations when the time comes to confront government and say, 'No, wrong way, go back.' So many of these organisations have found and shown that courage. The result of your work is that we together won additional time for scrutiny of this legislation and some improvements through amendments. But also so many disabled people came to find common cause and share political action with the people who enable us to sit in the wheelchair that works for us, to get the modifications to our home that allow us to move around within it, to communicate with each other, our friends and our families, to live free of pain and to regain function where we choose. That coming together and joining of those communities is something that now has been forged into a permanent bond by this fight, and I thank every organisation for their effort and energy.

I will put this question to the minister. Minister, what is your government's response to an allied health professional who tonight watches the passage of this bill and fears for the people that they support, for the business that they run and for the community they serve?

Jenny McAllister (NSW, Australian Labor Party, Minister for the National Disability Insurance Scheme) | Link to this | Hansard source

Senator Steele-John raises a couple of issues in his contribution now. I think the first is relating to the approach taken to establishing tests for functional capacity. I think the government has been really clear that we seek expert advice on these issues. It's why we've established a technical advisory group. A good number of extremely distinguished individuals have agreed to join that group. They are presently working. I think they have met twice. They are engaging very deeply on the way that we should assess functional capacity for access to the scheme. I'll reiterate the remarks I made earlier about this. Of course a social program of this significance should have clear guidelines about what is required to participate and whether or not the program is suitable for your particular characteristics. We consider that legislating that is important. The independent review considered it important, and we are keen to hear from disabled people and experts in developing the necessary arrangements.

In relation to pricing, it's pretty unexceptional for a government to set prices for a social program. This is effectively a $50 billion expenditure of public money, and the government needs to establish a pricing regime in this context. I'd make this additional point: people with disability should not be paying more than other Australians for the services they are receiving, and that is the focus of the work that the NDIA has been doing recently.

The issue here is where a minister should seek advice when setting the price for a key social program. To date, the price-setting has been done by the board on the basis of advice provided by the NDIA. The bill before you proposes that the minister would set the price based on advice provided by the NDIA. Minister Butler is on the record agreeing that there may be merit in moving responsibility for that advice in time to IHACPA, but the preliminary work that IHACPA has done on this subject advises that this would be a long process. Our focus at the moment is on making sure that the prices paid by participants are fair, are based on evidence, are sustainable and, importantly, are in line with the prices that are paid in other sectors.

The evidence before us in recent years indicates that the prices being paid from within the NDIA are higher than in other sectors—higher than in aged care, higher than in the veteran sector, higher than the prices paid by some compensation schemes, higher than the prices paid by some insurance schemes. The NDIA has been working on benchmarking so that the price-setting they have been recommending to date to the board—and, in future, to the minister, should this legislation pass—is based on an analysis of the pricing that exists in other markets. We may differ on this, but we think this is a prudent way to approach things. It's a prudent use of public money, but it's also an important signal to the disability community that services provided to disabled people shouldn't attract a premium; they should be priced at around the level that other Australians pay for those services.

Malcolm Roberts (Queensland, Pauline Hanson's One Nation Party) | Link to this | Hansard source

Minister, government amendment IC116 revised has just been received by our office—it's been presented just this evening—wanting to insert into the bill part 7, titled 'Immunity from producing documents or information':

(1) A person is not required to produce a document, or disclose any information, matter or thing, to a court, tribunal, authority or other person or entity having the power to make such a requirement, if:

(a) the person is, or has been, a person mentioned in subsection (2)—

which I'll get to in a minute; it's all encompassing—

(b) the document, information, matter or thing has come to the knowledge, or into the possession, or to the notice, of the person because of:

(i) the performance or exercise of the person's duties, functions …

The following positions are listed:

(a) the CEO;

(b) a Board member;

(c) the Commissioner;

(d) a member of the Advisory Council;

(e) the scheme actuary;

(f) the reviewing actuary;

(g) an Agency officer;

(h) a Commission officer;

(i) a consultant engaged under section 171 or 181V;

(j) a person performing services:

(i) for the Agency under a contract with the Agency; or

(ii) for the Commission under a contract with the Commission.

If someone does something wrong while in one of these positions, or having been in one of these positions, apparently they do not have to disclose documents or information. How can that lead to accountability? I thought this was all about care. We're concerned about the care given to disabled people, we're concerned about the taxpayer on the hook and we're concerned about Public Service accountability. The way we read it, it means Senate estimates cannot seek information or documents from these people. The first question is: isn't fraud on your radar? The second question is: was this part of your deal with the LNP?

Jenny McAllister (NSW, Australian Labor Party, Minister for the National Disability Insurance Scheme) | Link to this | Hansard source

Senator Roberts, it might assist you if I talk through the background for this amendment that the government has brought forward. At the moment, the legislation that governs the NDIS provides very broad immunities, including for the categories of persons that you just alluded to in your question, and that's for a very good reason. It's because the NDIS Quality and Safeguards Commission and the NDIA hold deeply personal information about people with disability. To ensure that that information, which is personal in nature, is protected and that disabled people who participate in the scheme can be confident that their information is protected, there are very strict privacy provisions about what can be shared about an individual person.

On occasion, you may have heard me or another minister being asked about a particular person or a particular case and we declined to answer because, appropriately, a person's individual circumstances held by a government agency may not be disclosed except under very limited circumstances. However, the challenge that we've been observing is that some providers have been arguing that that immunity extends to them. So when a fraud investigation or some other form of investigation is underway, providers have argued that they are not required or compelled to produce those documents because of this immunity.

This amendment essentially seeks to ensure that regulators can compel providers to provide documentation for the purpose of performing their regulatory functions. It would also enable agencies such as the Australian Criminal Intelligence Commission or the National Anti-Corruption Commission to investigate serious and organised crime operating in the NDIS. It will prevent NDIS providers from claiming immunity from the production of documents under 67G of the act. So NDIS providers and their employees would not be able to use this provision of the act to refuse to provide information to a court, a tribunal or other law enforcement agency with the power to seek this information. For example, to date, providers have attempted to rely on this immunity to refuse to provide information during workplace health and safety investigations. Immunity would henceforth only apply to officers of the NDIA and the NDIS Quality and Safeguards Commission. There would be exceptions where disclosure was necessary for the purposes of the NDIS Act, the Royal Commissions Act, the National Anti-Corruption Commission Act and the Australian Crime Commission Act.

Malcolm Roberts (Queensland, Pauline Hanson's One Nation Party) | Link to this | Hansard source

Couldn't it simply, in the interests of openness, require redaction of personal details?

Jenny McAllister (NSW, Australian Labor Party, Minister for the National Disability Insurance Scheme) | Link to this | Hansard source

The amendment before us seeks to make sure that the privacy provisions are being used as intended, and, in doing so, it seeks to make it clear that they are not intended to be relied upon by providers who have in recent times sought to use these immunities to prevent them from being accountable for some of their obligations. As I indicated in my earlier answer to you, the immunities that apply to officers of the NDIA and the NDIS Quality and Safeguards Commission are subject to exceptions where disclosure is necessary, and I listed those. There are some purposes under the NDIS Act that enable or compel disclosure. The Royal Commissions Act is relevant; the National Anti-Corruption Commission Act is relevant, and the Australian Crime Commission Act is relevant.

Malcolm Roberts (Queensland, Pauline Hanson's One Nation Party) | Link to this | Hansard source

Couldn't normal redaction processes cover the personal confidential details?

Jenny McAllister (NSW, Australian Labor Party, Minister for the National Disability Insurance Scheme) | Link to this | Hansard source

I think the advice we have is no and that the protections that are in place that protect the personal details of disabled people who are participants in this scheme are an important feature of the operations of the scheme.

Malcolm Roberts (Queensland, Pauline Hanson's One Nation Party) | Link to this | Hansard source

I'm not alluding to any people in their current position, but, in the future, if a CEO, board member, commissioner, member of the advisory council or scheme actuary were to do anything wrong, they wouldn't have to disclose that information; is that correct?

Jenny McAllister (NSW, Australian Labor Party, Minister for the National Disability Insurance Scheme) | Link to this | Hansard source

The advice that I have is that, if an employee of the NDIA or of the NDIS Quality and Safeguards Commission does something wrong, they are accountable in all of the ordinary ways, including, of course, to the National Anti-Corruption Commission. These protections apply only to the disclosure of personal information about participants.

Malcolm Roberts (Queensland, Pauline Hanson's One Nation Party) | Link to this | Hansard source

Let me check my understanding: it's only to personal details, personal disclosure?

Jenny McAllister (NSW, Australian Labor Party, Minister for the National Disability Insurance Scheme) | Link to this | Hansard source

The act defines protected information, Senator, and I'm paraphrasing here, but, in general and non-legal terms, protected information generally refers to personal information about participants.

Malcolm Roberts (Queensland, Pauline Hanson's One Nation Party) | Link to this | Hansard source

As a senator, I ask questions in Senate estimates. I'm not interested in personal details. I wouldn't like to see that come out in public, so I agree with that, but does this impact, in any way, a senator's right to gain access to information or documents in Senate estimates or orders for production of documents?

Jenny McAllister (NSW, Australian Labor Party, Minister for the National Disability Insurance Scheme) | Link to this | Hansard source

Not unless it contains that protected information that we were speaking about earlier. Senator.

Malcolm Roberts (Queensland, Pauline Hanson's One Nation Party) | Link to this | Hansard source

What if I asked for with that with the personal details redacted? I'm not interested in personal details.

Jenny McAllister (NSW, Australian Labor Party, Minister for the National Disability Insurance Scheme) | Link to this | Hansard source

I think it would depend on the circumstances, Senator. The prohibition is on the release of protected information, and, if you made a request of that kind, the officer at Senate estimates would have to consider their legal obligations and make a decision which was specific to the document that you were requesting.

Malcolm Roberts (Queensland, Pauline Hanson's One Nation Party) | Link to this | Hansard source

Thank you, Minister.

Jordon Steele-John (WA, Australian Greens) | Link to this | Hansard source

Minister, on permanence within the bill and on the question of all appropriate treatments, which we covered a little bit earlier, it's correct, isn't it, that whether or not a treatment which the government has defined as appropriate is actually available within the state that a participant may live in is not to be considered by the minister when determining whether or not the treatment is appropriate?

Jenny McAllister (NSW, Australian Labor Party, Minister for the National Disability Insurance Scheme) | Link to this | Hansard source

Senator Steele-John, the premise of your question is not quite correct, and it's perhaps worth explaining it. At the moment, a person applying to become an NDIS participant needs to demonstrate that their condition is permanent, and the decision about that is made by a delegate. That will continue to be the case, and so your assertion that the minister makes that decision is wrong. What the bill does do is make it clear that the minister may, by rule, assign some treatments as being not appropriate. That also reflects current practice within the NDIA. For example, at the moment, the NDIA would routinely judge that requiring a person to have a cochlear implant was not a treatment that would be required prior to demonstrating permanence for a person who is deaf. It is anticipated that the rules that the minister could make would reflect those kinds of practices.

The government intends to consult in the making of such a rule and will also be interested in the advice of the technical advisory group in considering what kinds of treatments would be effectively excluded by way of ministerial decision-making. But the actual decision about whether a person has obtained all appropriate treatment would be made by a delegate and would include seeking advice from the treating medical professional.

Jordon Steele-John (WA, Australian Greens) | Link to this | Hansard source

Under the legislation, as it currently sits before us, the power is granted to the minister to make rules, including rules relating to the appropriate treatments that a participant will need to demonstrate they have undertaken before gaining access to the NDIS. Is that correct?

Jenny McAllister (NSW, Australian Labor Party, Minister for the National Disability Insurance Scheme) | Link to this | Hansard source

As I indicated in my answer earlier, that rule-making provision allows the minister to essentially establish a list of treatments that would not be required. It doesn't enable the minister to establish a list of treatments that would be required. Treating medical professionals will provide advice about whether a particular treatment would materially improve, reverse or alleviate the impact or impacts of a person's impairments. They'll also provide advice about whether there is a medical reason that a particular person cannot undertake a medical treatment that may otherwise be appropriate. Again, I say that we intend to consult closely with people with disability, representative organisations and the broader community about this, and we will also draw on advice from the technical advisory group to ensure that the guidance is clinically robust and reflects contemporary evidence.

Jordon Steele-John (WA, Australian Greens) | Link to this | Hansard source

I think, again, this just points to the disconnect here, because one of the things that's being missed, of course, is the horrible and unjustifiable nature of requiring somebody to undertake a treatment as part of a process of demonstrating that they have a permanent disability.

For the ease of explaining the problem to the MPs who will soon take a vote on this, I will use myself as an example. I have cerebral palsy. And, as somebody with cerebral palsy of the kind and type that I have, as a child growing up there were a number of different treatment options available. One of the treatment options—at least, it was an option when I was a kid—is to undergo a course of Botox therapy. That involves the injection of the substance into relevant muscles to induce looser muscular structures. The foot is then set at an elevated angle within a plaster cast mould, which remains on the foot and lower leg for a period of six to eight weeks. I should say that this is how it was done when I was a kid in WA. In fact, we take pride, as a state, in being a pioneer in this particular process and treatment. I underwent that treatment for five or six years, if not more, and I did regain functional capacity in that time. My range improved, and I was able to weight bear more. But, at around the age of 11 or 12, I had a bad reaction to the substance. Quite frankly, I got sick of spending three or four months of the year, often in the summer, with my legs encased in plaster cast—for eight weeks or more—all to slow a decline in my range, which, increasingly, was not that necessary for me as I transitioned from using a Kaye walker into a manual chair.

Now, as this bill is written and, without doubt, in line with the culture that has been set in the agency, they would look at my example and see somebody whose functional capacity had declined because he'd made the decision to stop a medical treatment that was available under Medicare. It was not a restrictive practice and I should have re-engaged with that treatment to regain my capacity and function before applying for the NDIS. But what is missed there is my choice and the choice of disabled people. What's been said in this debate is nonsense. The delegate will decide based on evidence from somebody's doctor, for the cohort—for the person, as far as the person fits within the cohort. These rules will not be written at a person-to-person level, taking on board their individual circumstances and whether they choose to undergo a procedure. They can't be. The closest law can get to that kind of specificity is crafting a series of legislative principles to guide individual delegated decisions. Oh, wait, that's the NDIS we're scrapping tonight, folks. That's what it was. That's what guided 'reasonable and necessary'. That's what guided 'choice and control'—distinct principles. Rules for cohorts cannot reflect individual personalised circumstances, and we heard that again and again from the inquiry, so many times.

The government might think I'm wrong. The government might think I've not read the policy or read the act. I'm a politician, but are you telling me every organisation that made a submission has also got it wrong? Some of the finest legal minds in the country have got this wrong, have they? People that have been looking at administrative law and fighting it out with participants in the ART day after day have got it wrong, have they? You've rocked up here with a piece of legislation that hasn't got a single friend apart from some questionable service providers that coughed up at the last second, and that's all because we've all collectively read it wrong, is it? Or is it more likely that your government was in need of money and in need of savings? Rather than taking on and taxing the gas exporters and threatening the bottom line of the very corporations that so many of the members of the government and of the opposition have integrated into their post-parliamentary career plans—rather than take those people on—you've decided to cut the supports of disabled people and stick your metaphorical fingers in your ears, as expert after expert warned you what this bill could do and is likely to do.

We had a lesson from the government through the course of this inquiry—a masterclass they gave us all, I think—in just saying things with no factual basis, with confidence, in an attempt to spook experts and media into not believing what was written before their very eyes when they looked at this bill. But I think that, deep down inside, many members know the truth of this law and what it will do. The only way I believe many members of this government and certain members of this parliament have been able to justify this legislation to themselves is to believe: 'Well, we would never do that. We could—the bill lets us do that—but we wouldn't. We're not those kind of people.' But you won't always be there, folks. These people over there—they'll be there again at some point. What will they do with these powers, I wonder?

Little by little, decision by decision, what might you end up doing under pressure the next time there's a global shock you didn't expect, that you couldn't have predicted? Will you, potentially, be asked to reach for just another little order to cut just a little bit more—just five per cent this time out of social and community participation, just another 15 per cent out of capacity building? At the end of the day, anything's justifiable if the dichotomy of thought is between the NDIS existing or not existing at all. Who pays the price of that concession? We do. Disabled people do. We pay with our lives and with our liberties. As I said at the beginning of this hour or more of debate, and as I said at the beginning of the day, you will pay an electoral price.

Jenny McAllister (NSW, Australian Labor Party, Minister for the National Disability Insurance Scheme) | Link to this | Hansard source

Senator Steele-John's substantive contribution was really seeking further information about the approach to permanence. I did note that Senator Steele-John spoke at some point about spooking people, and it would be important not to spook people when we talk about a reform to a scheme as significant as this scheme is to the lives of people with disability.

The point, which I've made repeatedly, that I'll now confirm for Senator Steele-John by way of reading from the explanatory memorandum, is that the requirement for a disability to be permanent is already a feature of the scheme, and it is already a feature of the NDIS rules. For example:

The National Disability Insurance Scheme (Becoming a Participant) Rules 2016 … set out … how to determine whether an impairment should be considered permanent, or likely to be permanent. Rule 5.4 provides that an impairment is, or is likely to be, permanent only if there are no known, available and appropriate evidence-based clinical, medical or other treatments that would be likely to remedy the impairment.

The independent NDIS review recommended to us that we clarify the arrangements for access, including in relation to permanence. The EM says of part 8 of the bill:

This Part inserts an approach to assessing permanence of impairments when determining whether a person meets the disability requirements or early intervention requirements. The intent … is to provide a clear definition of permanence including what constitutes appropriate treatment. Amendments also include circumstances which cannot be considered when determining whether a prospective participant has undertaken all appropriate treatment.

The explanatory memorandum goes on to talk about some of the principles that underpin this:

The NDIS was never intended to replace health, rehabilitation and treatment services which play a critical role in preventing lifelong disability.

I think that matters, senators. We ought not concede that, if a treatment is available and appropriate, and could substantially remedy or alleviate an impairment, we shouldn't seek to pursue that. The government is making very, very substantial investments in our national public health system to make sure that Australia's excellent public health system is improved further and that people can access the treatments they require.

Senator Steele-John's second part of his contribution and questions asserted that there's something wrong with the government thinking about the fiscal sustainability of a scheme of this kind. It implied that it was somehow grubby to consider public finances or to consider whether the scheme is sustainable. I think it speaks to the difference between our political parties.

When the NDIS independent review made its report, it quoted from some of the evidence it had received. I'll paraphrase it because I can't remember the exact quotation, but it was something like this: 'A human right that cannot be sustained is a right that is effectively denied.' The government's concern is that a scheme that has too much fraud, is much larger than it was ever intended to be, is projected to cost more than $100 billion a year by the middle of next decade and doesn't always deliver the quality of service we would expect for people with disability is a scheme that is at risk of losing its social licence. We have research that indicates Australians are worried about this. That's in a context where, actually, Australians are pretty proud of this. Australians fought for the NDIS to be created, and they were good allies to the disability community who campaigned in an amazing way for the establishment of this scheme. The government thinks that that fight was worth it, and that it is worth making these reforms to secure this scheme for the future.

I have said this often publicly, but I mean it so sincerely: I was alive as an adult before the NDIS, and I met with people who lived with disability and felt so keenly the absence of support in their lives. That was an emotional experience; it wasn't just a material one. It was a sense of exclusion and abandonment. I remember thinking at the time that if we won an election—and it's a while ago now—we had to do something about it. I was so proud when an earlier Labor government did do something about it. But it falls to a Labor government again to make sure that this scheme is around for the long term.

Back in April, Minister Butler went to the Press Club and laid out our proposed approach. We did that deliberately well ahead of the budget so that the disability community and the broader community would have time to engage with our proposals. We tried to explain the challenges, as we saw them, honestly to Australians and to set out our solutions. We tried to say that we thought that, under our reforms, the scheme would continue to grow, would continue to offer supports, would continue to offer choice and control, and would continue to be the second-largest social program in Australia after the aged pension. We asked people to engage with that. In the months since, there has been a lot of discussion and debate about our reforms. I am yet to hear a person say that they think $100 billion a year is a good number, or a sustainable number, for a program of this kind. I'm also yet to hear any credible alternative proposition to restore this scheme to a sustainable level of growth. It's on that basis that the government concludes that the reforms we are bringing forward are the right ones. We've thought about them carefully, we intend to implement them carefully, and, most importantly, we intend to implement them in close consultation and engagement with the disability community.