National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024

Submission 183

Senate Standing Committees on Community Affairs – Legislation Committee

Via email: community.affairs.sen@aph.gov.au

19th July 2024

Dear Committee Secretary,

Thank you for the opportunity to provide a brief further comment following the publication of our supplementary submission to the previous inquiry last night (Supplementary Submission 80.1, attached).

Given the delays associated with allowing the National Disability Insurance Agency right of reply to adverse comments meant this submission was not listed in the final report, or available for the public to read prior to submissions to the new inquiry closing, we ask that it is published in full appended to this letter, as a submission to the new inquiry. We have also included Submission 80 as background reading for the interested reader, to place the subject matter of Submission 80.1 in its full context.

Most importantly, we ask that the material and recommended amendments in Submission 80.1 are considered carefully as evidence for this inquiry’s report. In summary, these are:

• Nine recommendations addressing amendments needed to ensure procedurally fair review rights in compliance determinations and assessment of impairments
• A comprehensive draft Section 10, to place an individualised definition of “NDIS support” in the primary legislation
• An accompanying draft Section 10A, to provide guidance and protections for participants spending flexible funds, and fairness in auditing of spending

We had planned to make a brief submission addressing any matters raised in the anticipated reply from the NDIA (as discussed with members of the Secretariat team), but as the Agency ultimately declined to respond, including addressing questions around ethics frameworks, we are unable to do so thoughtfully in a timeframe the Committee could realistically consider our further contributions.

As such, we request the opportunity to appear as witnesses at one of the hearings next week in lieu of a meaningful further submission to this inquiry.

We reject the Bill in its current form and call attention to the deficiencies in amendments circulated to date, including the commentary on the so-called ‘whole person’ amendment in Cat’s personal submission (made on 12th July 2024).

This Bill is still dangerous. It requires serious and dedicated collaboration with the disability community to eliminate the harms it will otherwise cause, and to ensure the legislated objectives of the NDIS will not be lost in a misguided attempt to cut costs at the expense of real-life suffering.

That will take more time than we have, but we can make progress if the Committee listens to the concerns of the community and the solutions many of us have put forward, which are not yet being taken seriously.

Yours sincerely,

Cat Walker, Uli Cartwright & Kath Madgwick

National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024

Submission - Supplementary to Submission 80

Community Affairs Legislation Committee

National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024

Cat Walker, Uli Cartwright & Kath Madgwick

Supplementary to Submission 80

10th June 2024

Dear Chair and Committee,

When journalist Rick Morton reached out to Cat about including our submission in a story for The Saturday Paper, we were already working on a supplementary piece with draft amendments to Section 10 and essential further amendments creating more targeted review rights as a protection for participants impacted by adverse non-reviewable decisions.

Cat’s previously referenced work identifying NDIS parallels with Robodebt was informed by study of the proceedings, submissions and exhibits of the Robodebt Royal Commission through the lens of the themes and dangers she recognised from her own experiences with the NDIS and stories from the disability community. She has sometimes interacted with key Robodebt witnesses and advocates online, in solidarity with their experiences and the deeper change we are all waiting to see.

One of those advocates is Kathleen Madgwick, whose son Jarrad died by suicide shortly after receiving a provisional debt notice:

“Mr Madgwick’s “provisional debt” does not appear to have been raised through income averaging; it seems to have been based on the payslips that he provided. His case exemplifies a different aspect of the Scheme’s brutality: the bald online statement to someone in dire financial straits of a “provisional debt outcome” of $1795.85, with no indication of how it might be repaid…

Ms Madgwick did not think the events of 30 May 2019 were the only cause of her son’s death. There were other difficulties in his life: the severe financial stress he was under, his homelessness, and the break-up of a relationship. What does seem clear, though, is that finding out about the debt in the way he did was a precipitating factor…”

“What happened to Mr Cauzzo and Mr Madgwick lays bare the question of how government should deal with vulnerable people. The harmful effects of the Scheme were not confined to the raising of inaccurate or non-existent debts. The blunt instrument of automation used to identify and communicate the possibility of overpayment was inept at determining vulnerability.

Empathy could not be programmed into the Scheme.“ 1

We knew the article would highlight some of the many parallels with ‘Robodebt Governance’ referenced in our submission, because numerous legal experts had drawn similar comparisons.

None of us realised the article would be published on the anniversary of Kath finding her son.

1 Royal Commission into the Robodebt Scheme, Chapter 10: Effects of Robodebt on individuals, pp. 339-340, https://robodebt.royalcommission.gov.au/system/files/2023-09/rrc-accessible-full-report.PDF

Joint Submission to Community Affairs Legislation Committee (Supplement to Submission 80)

Cat Walker, Uli Cartwright & Kath Madgwick Page 1

National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024

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Submission 80 - Supplementary 183 Submission

As Kath commented on Cat’s post: “I feel like a failure because I have never been heard! I just fit the political agenda…

I fought in my darkest hours, and it seems like they were not listening.“

But as Commissioner Holmes said when senior public servant, Louise Macleod, expressed a similar feeling of failure: Commissioner Holmes: “Why should you feel like a failure when you clearly raised a lot of important issues that just weren’t taken up?” Ms. Macleod: “Because I couldn’t convince others.”

Cat and Kath spoke the following day.

After discussing some of the concerns we had raised in Submission 80, and outlining the direction of this supplementary submission, Kath accepted the invitation to speak up with us and insist the Committee – and the Minister – heed the lessons of empathy, fairness and duty of care that became Kath’s purpose in the wake of Jarrad’s death.

It is a massive failure of Government to demonstrate that their main takeaway from the Robodebt Royal Commission is little more than How to Cover Ministerial and APS Backsides.

This is evident in the copying and pasting of so many other strategies echoing Robodebt into the lives of NDIS participants (as explored in Submission 80 and prior submissions referenced), relying on staying in technically lawful but deeply problematic grey areas. Our supplementary submission presents evidence that the NDIA is already engaging in compliance activity which replicates some of the most damning features of the Robodebt playbook, relying on the absence of a reviewable decision to prevent legal appeals of claims deemed non-compliant - in the name of ‘sustainability’ and cracking down on ‘fraud.’ These participants are at risk of debts being raised which will never have the Agency’s fingerprints on them, and therefore will never be reported.

But the supposed savings and successful identification of non-compliance will be, especially because the validity of participant non-compliance determinations cannot be challenged. In fact, we saw it play out in real-time this week.

And we have been here before: At the level at which decisions about the Scheme were being made, attention was entirely centred on implementing it to ensure it achieved “success,” measured in terms of the numbers of reviews completed and the amount of savings achieved. The focus was on how to do this. There was no critical analysis or reflection on whether it should, or even could, be done. The alarm bells were ringing loud and clear for anyone who cared to listen, but they were falling on deaf ears. 2

In this context, the words ‘Scalable Integrity Responses’ should terrify everybody. We are ringing the alarm bells because we need to have a serious discussion about the dangers of compliance programs being scaled up and protections against the inevitable harm.

If the Committee has a moral conscience, now is the time to show moral leadership.

2 Report, Royal Commission into the Robodebt Scheme, p. 128

Joint Submission to Community Affairs Legislation Committee (Supplement to Submission 80) Cat Walker, Uli Cartwright & Kath Madgwick Page 2

National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024

Submission 80 - Supplementary 183 Submission

The concerns of advocates are being dismissed as anxiety and fear-mongering despite being echoed by legal experts

Advocates and legal experts are warning about real-life suffering if this Bill passes. The Government is not listening, instead weaponising vulnerability to dismiss our concerns as anxiety – as if we are not capable of following the implications to their perfectly logical conclusions, and making an assessment based on the facts and probabilities in front of us.

But none of the current messaging changes what the Bill actually says, or what it will have the power to do if the Senate allows it to pass without substantial further amendments.

We are being asked to trust that the raising of debts against NDS participants would “only be in extreme circumstances such as where a person has deliberately misused NDIS funding,” but without targeted review rights of whether funding has been misused, before a debt is raised. That is way too much to ask when we have seen the harms of Robodebt.

We are also being asked to trust in the promises of co-design publicised late last week. If we believed this framework sufficed, we would not have bothered making Submission 80.

It’s also way too much to ask when the Minister has refused to engage meaningfully with us.

At the DSS online community catch-up last week, the most popular question – with 55 up votes – was from Cat: “Many advocates have asked you to hit pause & co-design changes to primary legislation WITH us. Why are you still rushing this through before listening to us?”

The Minister’s response was to immediately imply that our concerns are rooted in myth:

This is gaslighting. This is silencing of lived experience. This is the unconscious bias we interrogated at length in Submission 80.

Legal experts of the highest caliber are asking this Committee for more time and closer attention to the inevitable harm and danger of this Bill.

So are we.

3 Statement attributed to DSS spokesperson in Exclusive: Shorten revives the Coalition’s failed NDIS reforms, hhttps://www.thesaturdaypaper.com.au/news/2024/06/01/exclusive-shorten-revives-the-coalitions-failed-ndis- reforms

Joint Submission to Community Affairs Legislation Committee (Supplement to Submission 80)

Cat Walker, Uli Cartwright & Kath Madgwick Page 3

National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024

Submission 80- Supplementary 183 Submission

Protecting participants from ‘Robodebt Governance’ in the NDIS

The Agency’s current approach to proactive compliance replicates multiple Robodebt strategies and consequences by lawful stealth.

We refer to Dr. Darren O’Donovan’s Submission 56 to this inquiry:

“We need to watch for the dangers of working out of a particular mental model for a participant: the deliberately non-compliant or evasion one. The Robodebt Royal Commission embodies the danger of a regulatory mental model centred on one particular, limited cohort resulting in imbalance and poor targeting impacting on the broader population. We need to avoid that with more careful design of these powers.

We should never forget that a central conclusion of that Report: the more administrative processes you run into unsupported people’s lives, the worse outcomes you will obtain.“

It is fitting, then, to start with the messages being placed in the public domain.

“Nothing in the legislation changes debt recovery” is a distraction: The issue is how much easier it will be for the Agency to raise a debt.

An important message we’ve heard this week – no doubt in response to the criticisms referenced in The Saturday Paper, ours included – is this one:

“To be very clear, there’s nothing in this bill that changes the debt recovery arrangements. They remain the same. What this piece of legislation does is it aims to prevent changes to plan amounts, which would prevent plans being inflated.“4

But this response deflects from the substance of the concerns raised, which were about the numerous ways in which the Bill creates traps potentially resulting in a debt being raised against a participant, in the absence of the most basic safeguard: Targeted review rights.

The strategic narrative around Integrity reforms this week threw participants under the bus along with providers, based on unsubstantiated claims.

Much of this submission, including the case study and commentary, was already drafted when Deputy CEO Integrity Transformation and Fraud Fusion Taskforce, John Dardo, gave evidence at the Community Affairs Estimates session on Monday 3rd June 2024.

Considering that he made some of his most inflammatory claims knowing he either would not or could not substantiate them, Mr. Dardo’s comments were dangerous. The headlines that followed were entirely predictable and reminiscent of those weaponised against Robodebt victims. As the Committee knows, Uli is a member of the Integrity working group, and rather than feeling on the same page, he was left dreading the media firestorm.

Mr. Dardo showed up to Estimates and wrote strategic cheques his “evidence-base” and “exemplars” couldn’t cash, at least not in the same news cycle.

Proof: Committee Hansard, Community Affairs Legislation Committee, Senate Estimates, 3 June 2024 (Mr Matthew Swainson, Acting Deputy Chief Executive Officer, Governance, Risk and Legal)

Joint Submission to Community Affairs Legislation Committee (Supplement to Submission 80)

Cat Walker, Uli Cartwright & Kath Madgwick Page 4

National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024

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Submission 80 - Supplementary 183

Submission

It would make little difference to public perception if Mr. Dardo produced the exemplars and evidence or provided more detail in response to questions on notice: He made these statements knowing the media would run with this narrative.

In doing so, he threw NDIS participants under the bus, because he provided no clarifying evidence or detailed statistics beyond the assertion that at least five percent of claims by participants are inconsistent with their plans, using only the most predictably inflammatory examples.

Mr. Dardo should have known better, because we have been here before. People were shamed and demonised, and people died. And yet he showed up at Estimates, in the middle of debate on the Bill, and threw rocket fuel on the fire.

What are we being told about current Integrity reforms, and why?

The additional commentary provided by Mr. Dardo at Estimates5 is intriguing in light of the concerns we intended to bring to the Committee’s attention. For example:

• “To give you examples, there are the prosecutions, but, even more important than that, in terms of the volume of the response that we’re implementing at the moment, there are the stoppers. There’s the stopping of payments where the providers are problematic or the claims are problematic. …

We’re stopping the claims, and we’re saying, ‘We’re not confident that this claim is legitimate; you need to provide evidence that it’s legitimate.’ …

If we can stop it before it goes out, we then don’t have to try and recover the money or raise a debt to recover the money. We need to get better at stopping it.“

• “What I would say is that what we can tell you with certainty is that the minimum error rate is five per cent. That’s the minimum error rate. Those errors don’t include identity fraud, fraudulent invoices, false statements, collusion and all the other stuff…

That is the minimum error rate.“

• “There would be thousands of cases where participants are claiming things that are not consistent with a plan…

[In] most cases our integrity work stops at the point where we establish that it wasn’t on a specific NDIS related claim…“

We keep categories at a broader level—whether the claim was inconsistent with the plan, or whether it was a duplicate claim or whether it was a claim that was withdrawn; there are other categories that we use. But we certainly have lots of exemplar detail for examples of things that are ticking over our risk typologies—the things that we’re looking for to try to stop.

“Prosecution is not the answer. It’s too late. We’ve got to get back to prevention…

If we don’t go back and tune the way the system is designed now—I can tell you now there is not sufficient judiciary to process the cases we have in the pipeline in the country. We can keep thinking that prosecution is the endgame. It can’t be prosecution. We’ve got to get to prevention.“,

5 Proof Committee Hansard, Community Affairs Legislation Committee, Senate Estimates, 3 June 2024 (Mr John Dardo, Deputy Chief Executive Officer, Integrity Transformation and Fraud Fusion Taskforce)

Joint Submission to Community Affairs Legislation Committee (Supplement to Submission 80)

Cat Walker, Uli Cartwright & Kath Madgwick Page 5

National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024

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Submission 80 - Supplementary 183 Submission

We’ve got to think more about how the money is flowing, what the evidence is that we require for somebody to receive the funds and how we substantiate that it has been used for outcomes…

We are hearing two main things here: That the Agency is actively stopping claims it deems non- compliant, and that they seemingly want to keep as much as possible out of the legal pipeline.

How is this pre-payment compliance review strategy working in practice?

The Request For Information relating to pre-payment review of a claim attached is one of many the parent nominee of an NDIS participant received in March and April 2024.

One of the claims reviewed was subsequently refused based on a single word in the invoice, despite collateral information aligning with a legitimate support anyone can use flexible funding for, but which is also specified in the plan in question.

Of note is the limited information requested to justify the claim and the absence of a direct phone number to the relevant branch or direct email to the integrity officer. The refusal letter explicitly highlights that it is a non-reviewable decision. Whoever determined these details certainly “turned their minds to” this choice.

Relevantly, executive briefing documents prepared for the February 2024 Community Affairs Estimates session refer to a “Robodebt Working Group” with the following brief description:

“The Agency has established and internal working group to consider the recommendations from the Royal Commission into Robodebt and how they will impact the delivery of legal services into the future.”

The following statement is attributable specifically to Cat and developed independently of any knowledge obtained by the authors through co-design:

“My greatest fear with the Robodebt Royal Commission was always that the findings would just teach the powers that be to stick to the letter of the law next time. The fact the NDIA’s response has been to reject all comparisons to Robodebt in public, while the sole reference to an internal Robodebt Working Group has a narrow focus on legal implications, is extremely concerning to me. I urge the NDIA and Minister to engage meaningfully with the broader human impacts of Robodebt culture, because good intentions aren’t worth much if we see the same harms. That should start with closer scrutiny of participant-directed compliance activities which are currently being scaled up before previous claims to ethics have been substantiated.

When this case and the associated correspondence from the NDIA’s Scalable Integrity Responses Branch were shared with me, my mind went straight to the Robodebt letters when I saw the limited information requested and that the only phone number listed was the National Contact Centre, because everybody knows they are powerless to connect us to a specific person or team when we need to contact them directly.

At the time of our initial joint submission on the NDIS Bill, we suggested an amendment to add targeted review rights for a Section 46 decision that an amount had not been spent in accordance with a plan, rather than just Section 182 decisions relating to debts.

When I saw the outcome of this case, I realised that if we do not also get an urgent amendment to add review rights for supposedly non-compliant claims which are never paid out, we could see the NDIA perpetrate Robodebt by lawful stealth, leaving providers to do the dirty work of debt collection for unpaid invoices bearing the participant’s name.

Joint Submission to Community Affairs Legislation Committee (Supplement to Submission 80)

Cat Walker, Uli Cartwright & Kath Madgwick Page 6

National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024

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Submission 80 - Supplementary 183 Submission

We need to be concerned about more than reversing the onus of proof here. This is also about reversing the onus of proof in the context of claiming flexible funds which have already been approved in a participant’s budget, but without asking for enough information, and being denied any recourse to appeal a claim the Tribunal or Federal Court might find the victim was entitled to receive all along. This is about business rules and behavioural strategies which sound far too much like Robodebt, and that started with a very human draft New Policy Proposal by a senior public servant who then spent the five years preceding the Robodebt Royal Commission in compliance at the NDIA.

If this was genuinely about payment integrity, the NDIA would ask for more information aligned with the self-management checklist and how the claim relates to the goals in our plans and our disability.

If this was fair, it would be reviewable.

In the context of a scalable behavioural compliance program, the fact claims are being cancelled without encouraging a meaningful explanation is also a behavioural strategy and somebody made a choice about this business rule.

So, who is responsible for the New Policy Proposal behind a scalable integrity program which can –only be achieved at scale with human input – to deflect criticisms around any automated features – by limiting the scope of information requested to justify the claims, outside the jurisdiction of the Tribunal it would otherwise overwhelm?”

The claimed “minimum five percent error rate” deserves significant scrutiny here.

It is not possible for an Integrity officer to make a fair, rational and individualised decision about whether a claim is consistent with a plan within the narrow parameters they are working with. This problem will escalate as this program is scaled up, because of the time constraints placed on the degree of human input: There simply will not be enough time to make an informed assessment.

Mr. Dardo made a very serious claim that at least 1 in 20 claims made by participants are not consistent with their plans, when the current proactive strategy relies on not conducting a fair review in the first place and operating in a space outside the jurisdiction of review rights. As such, the claimed five percent error rate cannot be substantiated as correct, because we do not know how many of this five percent would be overturned if open to review.

One must question whether this is the real motivation for restricting the definition of NDIS support. It would certainly be an attractive shortcut to more convenient compliance interventions, but that path is fraught and unlikely to achieve genuine savings if it denies participants access to many cost-effective and practical supports.

What’s the point of the Wedding Tax argument if we are forced into using those charging Wedding Tax just to have some confidence our claims will be paid out in a timely manner?

Why has the Agency’s new approach to Scalable Integrity Responses through pre-payment review for compliance been omitted from Section 45?

It is extremely concerning to realise that the pre-payment review plan rolled out by the Scalable Integrity Responses Branch in recent months – and protections against the scenario highlighted in this case study – has specifically been omitted from the new powers inserted at proposed Section 45(4), let alone from having an associated reviewable decision.

At present, we have a situation which allows the Agency to be judge, jury and executioner, potentially leaving participants without supports they may well be entitled to, no recourse to challenge the decision, and the risk of being pursued by private debt collectors on behalf of unpaid providers.

Joint Submission to Community Affairs Legislation Committee (Supplement to Submission 80)

Cat Walker, Uli Cartwright & Kath Madgwick Page 7

National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024

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Submission 80 - Supplementary 183 Submission

The Agency will report this as the number and value of “non-compliant” claims successfully stopped, without any mechanism for the validity of such claims to be scrutinised, which is exactly what happened at the Monday 3rd June 2024 Community Affairs Estimates session.

Would the Agency be so quick to call this a success if they waited until the payments were made and reported on the number and value of debts raised against participants?

That seems doubtful, and the fact remains that keeping the Agency’s fingerprints off of debts arising from cancelled claims for support already received could have dire consequences such as those we saw in Robodebt.

As the impacted individual put it:

“In addition this episode has taken a toll on my [partner] who has scrupulously accounted for expenditure over 10 years and now feels like [they are] somehow at fault and also worries if we can’t resolve this we will be saddled with the debt to the Service Provider (into several thousand dollars).”

If the Agency believed in the “integrity” of its Integrity program, it would have recommended it be legislated.

It is essential that the Committee recommends amendments to enable scrutiny and legal challenge of this approach, including robust review rights for all decisions that are currently taking advantage of a non-reviewable No Man’s Land to avoid scrutiny of compliance activities.

While we do genuinely appreciate Mr. Dardo’s stated focus on participant safety, particularly in the more extreme scenarios of exploitation he described at Estimates, we find it deeply concerning that this focus on participant safety does not extend to the far-reaching consequences of making decisions of claims being inconsistent with plans, at scale, with the narrow and inadequate parameters evidenced in this case study, and we cannot accept the claimed error rate on face value when these participants are unable to mount a legal challenge to overturn a decision that a claim was not consistent with their individual plan.

We should all know better by now, because we know what happened when Robodebt was scaled up without adequate safeguards for those it would impact:

At the level at which decisions about the Scheme were being made, attention was entirely centred on implementing it to ensure it achieved “success,” measured in terms of the numbers of reviews completed and the amount of savings achieved. The focus was on how to do this. There was no critical analysis or reflection on whether it should, or even could, be done.” 6

When all current reforms are being shaped to an arbitrary 8% target, a claimed “error rate” of 5% is a very attractive weak spot to squeeze perceived savings from. We therefore must ask the question: Is this current program about genuine compliance, or is it going harder as part of an overall push to reach this ultimate KPI through any means necessary?

As Kath put it when the three of us spoke:

“KPIs in compliance is inhumane, because people will do anything to meet their KPIs.”

6 Report, Royal Commission into the Robodebt Scheme, p. 128

Joint Submission to Community Affairs Legislation Committee (Supplement to Submission 80)

Cat Walker, Uli Cartwright & Kath Madgwick Page 8

National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024

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Submission 80 - Supplementary 183 Submission

Speaking to the overall failure of Government, the APS and the NDIA to heed the bigger lessons of Robodebt, Kath implored all to consider that:

“[The Government] doesn’t have a system that prevents harm in what they’re trying to do. You don’t go out and take a Mini to tow a caravan. That is a lack of duty of care.

If the system can’t cope and pick up vulnerabilities, don’t do it. If you want to do something, the system must be able to prevent harm.“

We would argue that this encompasses all the vulnerabilities examined in Robodebt, but also the more complex types of harm the Government and NDIA must consider in NDIS compliance initiatives.

This is because the implications for NDIS participants don’t stop at debts, and bringing compliance upstream creates substantial additional risk for participants which is playing out in an unlegislated, unreviewable and wholly invisible space, reported only as an unchallengeable error rate of claims successfully stopped.

We understand the Fraud Fusion Taskforce has an Ethics and Human Oversight Framework7, but still has not published this for public scrutiny. Many questions also remain unanswered regarding the ethics of using behavioural insights in NDIS compliance – imported to the NDIA by the same subject matter expert who made this a key feature of Robodebt – in the context of this specific population.

If enough of that work had been done, with full transparency and exploration of the potential impacts on vulnerable cohorts, Mr. Dardo might realise that many in a specific cohort he called out are likely having an involuntary flight or shutdown response as a direct result of their disability in the face of a perceived threat.

In fact, it’s eerily close to a scenario Cat predicted in her own submission to the Robodebt Royal Commission (referenced in our previous submission) when considering the implications for the NDS:

“We have other participants who haven’t understood what they should be claiming and when we approach them they cease contact and refuse to engage.

Then there are the vast majority of participants that are trying to do the right thing, and we have to figure out how we get the balance right so that we help the people who are trying to do the right thing get it right more often.“ 8 (emphasis added)

Yet, Mr. Dardo frames this group as behaving in a deliberately non-compliant way, by immediately comparing them to those “trying to do the right thing.”

Isn’t this exactly the “mental model” Dr. O’Donovan warned us all about in his own submission to this inquiry? Who is to say the former were not trying just as hard? Who is to say they are not in an involuntary spiral and at extremely high risk of becoming a suicide statistic?

Mr. Dardo has no right to imply otherwise without further exploring the implications of the value judgment he is making and enabling the validity of the associated non-compliance determinations to be tested. That might make his work harder, but we have been here before, we have seen the human cost, and we cannot afford to make the same mistakes.

National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024

[Provisions]

Submission 80 - Supplementary 183

Submission

5th June 2024 note: The Government has just introduced further amendments to Section 45 which capture some of the exploitation concerns raised, but which still only capture payments that would drain a plan or sections of a plan, and not all the other payments to be impacted by this “scalable” program. Why is that?

At the Estimates session on 3rd June, Mr. Dardo also made repeated references to needing to prevent rather than prosecute or audit, insisting:

• “There are weaknesses in the design of the system that need to be addressed. We cannot prosecute or audit our way out of this.” 9

That is not a good enough reason to deny participants these critical review rights. As NDIA Chief Counsel and Acting Deputy CEO of Governance, Risk and Legal, Matthew Swainson said while sitting on the same table:

• “The right to seek appeal of a government decision is a bedrock of our system of administrative review.” 10

At this point, it is worth revisiting the Robodebt testimony of whistleblower Colleen Taylor – awarded an Order of Australia Medal just today – of what she observed when the level of human involvement was restricted in favour of scale and savings, while still in the manual phase:

Ms Taylor became concerned about the inability of the process to identify all of the information necessary to properly investigate a discrepancy and calculate any subsequent debt, including information from employers and the recipient’s own departmental record. She considered that the changes “would result in a large number of debts being issued to people when they did not really owe a debt, or any debt they did have was lower,” and that “relying on averaging would not produce a result which was even close to right in many cases.”

Ms Taylor said:

“It seemed to me at the time that the purpose of the changes was to massively increase the number of debts being issued, to churn out debts on an industrial scale, based on the assumption that there were huge levels of debt which could be recovered. It also seemed to me that it was going to proceed despite the fact that many of the claimed debts would not be correct.”

In early 2016, Ms Taylor raised some of her concerns with departmental officers including her supervisor and the “Compliance Help Desk.” …

Ms Taylor expressed her earnest concern, “…as a Compliance unit, we should not be the ones stealing from our customers.“ When asked about that comment in oral evidence, she responded:

• “Well, if we know there’s no debt, and yet we’re sending a debt notice out to someone, isn’t that stealing?” 11

9 Proof Committee Hansard, Community Affairs Legislation Committee, Senate Estimates, 3 June 2024 (Mr John Dardo, Deputy Chief Executive Officer, Integrity Transformation and Fraud Fusion Taskforce)

10 Proof Committee Hansard, Community Affairs Legislation Committee, Senate Estimates, 3 June 2024 (Mr Matthew Swainson, Acting Deputy Chief Executive Officer, Governance, Risk and Legal)

11 Report, Royal Commission into the Robodebt Scheme, p. 126

Joint Submission to Community Affairs Legislation Committee (Supplement to Submission 80)

Cat Walker, Uli Cartwright & Kath Madgwick Page 10

National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024

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Submission 80 - Supplementary 183 Submission

Even in the context of cancelled claims rather than debts raised, Ms. Taylor’s perspective is an important one when discussing the Agency’s stated 5% error rate, with no scrutiny of the risk that some of these determinations may well be wrong, or the consequences for participants who are left out of pocket, in debt or without support if their claims are cancelled incorrectly.

The Government may have recognised her as Colleen Taylor OAM today, but did they understand what she was trying to teach them?

Critical amendments to create new targeted reviewable decisions

The following amendments to include new reviewable decisions are essential to place checks and balances on Agency overreach and misuse of non-reviewable decisions beyond the reach of the Tribunal and Federal Court. We ask the Committee to engage further with the legal experts at your disposal who can better pinpoint and refine the legal detail of these protections, and any further safeguards required.

Recommendation 1: Amend Section 45 to add a paragraph (5) capturing the full scope of the Agency’s current pre-payment review program, including that the Agency must request all information which allows a participant to demonstrate that a claim is made in accordance with the plan and/or that the support is an NDIS support for that participant.

Recommendation 2: Amend Section 99 to include any decision made under proposed Subsection 45(5) above to not pay an NDIS amount claimed by a participant.

Recommendation 3: Amend Section 99 to include a decision that a person has not complied with Subsection 46(1) in relation to an NDIS amount and an equal amount is a debt due to the Agency, made under Subsection 182(3).

Recommendation 4: Amend Section 99 to include a decision by the Agency to cancel a claim for an NDIS amount on the basis that, if the Agency made the payment to or in respect of the person, the person would be deemed not to have complied with Subsection 46(1) in relation to the NDIS amount and an equal amount would otherwise be a debt due to the Agency under Subsection 182(3), made under Subsection 46(1).

Recommendation 5: Amend Section 99 to include a decision that a support acquired or provided to a participant is not an ‘NDIS support’ for the participant, made under Subsection 46(1A)(b)(i).

Recommendation 6: Amend Section 99 to include a decision that a debt is due to the Agency on the basis a person is not entitled to an NDIS amount received, made under Subsection 182(1).

Recommendation 7: Amend Section 99 to include a decision that a person is taken not to have been entitled to the payment of an NDIS amount … as a result of a contravention of this Act, the regulations or the National Disability Insurance Scheme rules and/or a false or misleading statement or a misrepresentation, made under Subsection 182(2)(b).

Recommendation 8: Amend Section 99 to include a decision that one or more of the participant’s impairment(s) do not meet the disability requirements and/or early intervention requirements, made under Section 24 or Section 25 at the time a person becomes a participant.

Recommendation 9: Amend Section 99 to include a decision that one or more of the participant’s impairment(s) do not meet the disability requirements and/or early intervention requirements, made under any section or subsection of the Act, at any time after the person becomes a participant.

National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024

Submission 80 - Supplementary 183 Submission

Proposed amendments to Section 10: Definition of NDIS Support

Summary of recommended changes to protect the golden thread to

goals, outcomes and a life worth living

We appreciate the amendments introduced, but strongly object to the detail being left to the Rules. NDIS support should be defined clearly in the primary legislation with clear reference to the following legislative obligations:

• Sections 3 & 4
• Section 17A
• Section 31

Section 10 should limit the definition of NDIS support only to the extent that a support is the responsibility of another service system, or is not related to the participant’s overall disability.

Overall, Section 10 should:

• Encapsulate all the features of the current Act and Rules which enable supports to be individualised, to maintain the ‘golden thread’ to goals, aspirations, and a life worth living and capture the spirit and purpose of the NDIS in enabling participants to identify tailored, flexible and innovative responses to their individual support needs
• Define the link between support and need by the overall disability, not impairments
• Act as a checklist for spending of flexible funds, similarly to current self-management checklists and the “Can I Buy It” capacity-building resources developed by organisations such as The Growing Space

Recommendation 10: Amend Section 10 to enshrine the golden thread to

outcomes in the primary legislation definition of ‘NDIS support’

We are not lawyers, and we ask the Committee to create a platform for the legal experts who have contributed to this inquiry to engage with lived experience voices to define a Section 10 which captures this golden thread and enshrines it in the primary legislation. That said, the below is an attempt to illustrate some of the elements we must ensure are captured in the Act, and not left to the Rules.

10 Definition of NDIS Support

Supports that are NDIS supports

A support is an NDIS support for a person who is a participant or prospective participant if:

1. the support will assist the participant to pursue the goals, objectives and aspirations defined by the participant in the participant’s statement of goals and aspirations; and
2. the support is related to a need, barrier, or risk arising from the participant’s disability, including the collective or compounding impacts of the participant’s permanent impairments combined, or their interaction with other health conditions, the participant’s environment, or other barriers;

Joint Submission to Community Affairs Legislation Committee (Supplement to Submission 80) Cat Walker, Uli Cartwright & Kath Madgwick Page 12

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Submission 80 - Supplementary 183

3)

The support is likely to be effective and beneficial for the participant or prospective participant having regard to current good practice or other evidence of the likely benefit of the support, which may include:

• a) The lived experience of the participant, their informal supports, or peer support groups; or

• b) The evidence-informed advice of the participant’s treating professionals with regard to the individual needs and lived experience evidence of the participant; or

• c) Published and refereed literature and any consensus of opinion; or

• d) Anything the Agency has learnt through the delivery of the NDIS, which must be transparently published and available for scrutiny by the public and other experts; and

4)

The support is not more appropriately funded or provided through other general systems of service delivery or support services offered by a person, agency or body, or through systems of service delivery or support services offered:

• a) As part of foundational supports delivered by State governments, subject to: i. Co-design of proposed foundational supports and associated NDIS Rules; and ii. Delivery, successful implementation and practical availability of agreed foundational supports; or

• b) As part of a universal service obligation; or

• c) In accordance with reasonable adjustments required under a law dealing with discrimination on the basis of disability; and

5)

The support meets any of the following additional definitions of NDIS support:

• a) The support will give effect to one or more of Australia’s interdependent, interrelated obligations under the Convention on the Rights of Persons with Disabilities done at New York on 13 December 2006 ([2008] ATS 12) for that participant or prospective participant without imposing limitations on those rights; or

• b) The support is assistive technology, which will include any disability-specific or universal design technology or device that will help the participant or prospective participant: i. Do things the person cannot do because of their disability; or ii. Help the person do something more easily, safely, effectively, or independently, by eliminating or minimising a disability-related barrier or risk; or

• c) The support is a participant innovation project as defined by the participant in their statement of goals and aspirations and with an agreed flexible budget defined in their statement of participant supports;

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Submission 80 - Supplementary 183

d)

the support is a tailored, flexible or innovative response to the individual goals and needs of the participant or prospective participant; or

e)

The support will assist the participant or prospective participant to undertake activities, so as to facilitate the participant’s social and economic participation, or is otherwise likely to support the independence or social or economic participation of the participant or prospective participant; or

f)

The support enables the right of the participant or prospective participant to exercise control over their own life, including where they live and who they live with; or

g)

The support is likely to advance the inclusion and participation in the community of the participant or prospective participant with the aim of achieving their individual aspirations; or

h)

The support is likely to benefit the participant or prospective participant by:

• i. mitigating or alleviating the impact of the person’s impairment upon the functional capacity of the person to undertake communication, social interaction, learning, mobility, self-care or self-management; or
• ii. preventing the deterioration of such functional capacity; or
• iii. improving such functional capacity; or
• iv. strengthening the sustainability of informal supports available to the person, including through building the capacity of the person’s carer; or

i)

The support is otherwise declared by National Disability Insurance Scheme rules made for the purposes of this subsection to be an NDIS support for:

• i. participants or prospective participants generally; or
• ii. early intervention participants or prospective early intervention participants generally.

10A Protections for Participants When Spending Flexible Funding on NDIS Supports

1)

Before taking any action on the basis that a claim or NDIS amount received for a claim is, or would be, spent in contravention of Section 46, the Agency is to enable a participant the opportunity to defend the claim or NDIS amount received for the claim according to the criteria outlined in Section 10.

2)

In assessing the participant’s justifications under subsection (1), the Agency is required to take an individualised view of the unique circumstances and individual needs of the participant, the broader objectives of the NDIS Act, and the obligations of Section 31, which should be used as a guide when supports are not specifically defined in a plan.

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Community Affairs Legislation Committee

Joint Submission by Cat Walker & Uli Cartwright

Independent Advocates & NDIA Participant Reference Group Members

About The Authors

Uli Cartwright is a disability advocate, facilitator, public speaker and co-producer of his feature film, Life is a Battlefield, which documents five years of his life. Uli lives with multiple disabilities and is committed to using his lived experience and knowledge of foster care, group homes and health care to be able to improve practice and safeguards with a human rights and person centered lens, Uli is not afraid to stand up and be heard, to make some noise, and to tell it like it is – and how it should be.

Uli was appointed to the National Disability Insurance Agency (NDIA) Participant Reference Group (PRG) in 2022. His two-year appointment was extended through 2024. Uli is also a member of the Fraud Reform for Outcomes working group at the NDIA and a board member of Villamanta Disability Rights Legal Service.

Cat Walker is an experienced educator, speaker, and advocate for horses with invisible physical disabilities that mirror her own story. She brings this research background to systemic advocacy around the support needs of neurodivergent adults, invisible and multiple disabilities. Cat’s research and grassroots engagement taught her that evidence-based practice can be slow to catch up, and that lived experience evidence is important to make space for in defining ‘best practice’ approaches, even when it is hard to capture.

As a newly appointed member of the NDIA’s Participant Reference Group, Cat is committed to protecting the NDIS for future generations, and she hopes her autistic directness will be valued and met with equal directness by NDIA staff and Government alike.

As PRG members, our role is to represent and amplify the diverse lived experiences of NDIS participants, including guidance on policy and other projects.

However, we are not making this submission on behalf of the PRG or other NDIA reform groups. The opinions expressed within are our own and informed by those we have heard from the community. We have taken great care to honour our confidentiality agreements and ground our concerns in information already in the public domain. Commentary on Compliance and Integrity is developed independently of Uli’s co-design work on fraud, referencing prior published work by Cat and others.

We are speaking out because we are concerned that the voices of the hundreds of thousands of people with disabilities that we represent have been excluded from the development of proposed legislation which will have far-reaching impacts on our lives, and on our social and economic participation as members of the Australian community. We are asking the Government to treat co- design as a partnership, not an option or a PR exercise. We are calling for genuine co-production across agencies and Governments.

National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024

Executive Summary

Let’s start with Problem One: We, along with our fellow PRG members, were not briefed on this Bill until the day after Minister Shorten tabled it in parliament, despite being subject to confidentiality agreements just like the various concerned stakeholders referenced in media reports the week prior. This is a matter of temporal fact.

The Minister should have trusted us and all of our NDIA co-design and advisory colleagues with co-production of draft legislative changes.

The Minister should have trusted the public with an exposure draft.

Yet, as a group selected for our lived experience to represent and advocate for the entire NDIS participant cohort, we weren’t even trusted with an early briefing, let alone the opportunity to give feedback before it was tabled in Parliament.

This is a terrible way to begin “co-designing” NDIS Reforms.

Co-designing the Rules is not enough when this Bill locks in so many deeply problematic changes we will be stuck with.

We write to the Committee out of genuine concern, and to advocate for a path forward defined by true co-design, because we believe this is the standard of co-design the more than 646,000 NDIS participants we represent deserve.

We also believe this is the standard of co-design required to protect the human rights this Bill seeks to deny, and to ensure the lives the original NDIS Act asked them to dream of will remain in reach.

We ask that this co-design includes:

• Amendments to enshrine co-design – and the framework through which it will be conducted – in any changes to the NDIS Act. This framework must be co-produced with and endorsed by people with disability, not decided by the Government or NDIA.

• Trusting the Participant Reference Group (PRG) and Independent Advisory Council (IAC) with confidential involvement in co-production of critical changes to this Bill, and of all draft legislative instruments before these are presented to the States and the public:

  • Excluding the PRG from this process is a decision to exclude the representative voices of NDIS participants in decisions that will impact every facet of our lives.
  • Involving the PRG enables us to amplify the feedback we all receive from our networks: It allows us to ensure participant voices are included and advocate for their human rights to be upheld, under the protection of our non-disclosure agreements.

• Providing opportunities for the entire disability sector, including NDIS participants and families, to fully understand and respond to the implications of any proposed legislative changes and associated draft legislative instruments before they are tabled in Parliament.

National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024

Problem Two is that this Bill is incompatible with human rights, and co-opts the hard-won “reasonable and necessary” terminology to justify the selective denial of our human rights under the UNCRPD:

“To the extent that [the Bill] may limit human rights, those limitations are reasonable, necessary and proportionate to ensure the long term integrity and sustainability of the NDIS, for the benefit of all persons with disability who have access to the NDIS.”

The Minister’s words do not merely say that it is reasonable and necessary to prioritise budgets: The Minister is saying that it is unreasonable and unnecessary to uphold the human rights the Scheme was intended to give life to because of the ‘budget blow out’ narrative. By omission, the Minister is saying that denying NDIS participants the right to choose where they live and who they live with is acceptable for budget reasons. That our contributions to society are not worth investing in.

This is so offensive to the entire disability community that Minister Shorten should make a public apology.

Would it be okay to do to the general public?

Why is it okay to do to people with disability?

Problem Three is that this Bill locks in procedurally unfair processes which echo ‘Robodebt Governance.’ Making concerning elements lawful won’t make them ethical.

If passed in its current form, the Bill will create a horrific maze of red tape, extreme administrative burden, and excessive checks and balances for people with disability, with no rights to targeted review of decisions.

This will create so many hoops for those forced to navigate it to jump through that we will be unable to realise the overarching goal of living an uninterrupted, fulfilled life with our disabilities.

If our human rights say we are equal before the law, why must we carry such extreme administrative burdens? Why will we be forced to carry these burdens while simultaneously being stripped of our rights to be deemed the experts of our lived experience and disability support needs?

Our NDIS plans are legal contracts with the government. These contracts rule our lives. Why does this Bill ensure there are far greater consequences for us than there ever are for the Agency or the Government?

This Bill also locks in some of the most concerning risk factors for a Robodebt 2.0 scenario. This would destroy, and potentially end, the lives of participants. That may not be the intent of the Government, but the legal infrastructure will be there.

The Office of Parliamentary Counsel (OPC) confirmed this Bill was drafted by OPC on instructions from the Department of Social Services (DSS), with the contact’s sources believing the NDIA had some involvement. How much, we do not know.

However, the changes around dissecting out individual impairments for needs assessment, planning, spending and compliance reasons, suggest certain facets of the NDIA that have

National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024

upheld these policies have influenced said changes, some of which are in direct conflict with the recommendations of the Capability and Culture of the NDIA inquiry, which concluded that these practices were not only unlawful, but discriminatory:1

2.29 The NDIA’s distinction between ‘primary disability’ and ‘secondary disability’

has no basis in its governing legislation or the reality of participants’ lives. This section will consider the impact that this imposed differentiation, which operates as aorm of discrimination, has on participants. As a starting point, it can result in participants being denied supports for impairments that the agency determines are not related to their ‘primary disability’.

2.41 Ms Catherine Walker indicated that the entire concept of primary disabilities

was an ‘NDIA fiction’ that had no basis in legislation. She argued that this ‘fiction’ led to under-recording of multiple disabilities and therefore compromised disability- elated data not only in relation to participant supports, but also for the entire Australian population.

2.43 Villamanta Disability Rights Legal Service gave evidence that recording a

participant’s ‘primary disability’ would effectively determine which of their impairments would be supported and what levels of funding would be provided in their plan. It explained the impacts of this ‘cookie-cutter’ model:

“But people don’t come pre-packaged with a primary disability. People come with all sorts of complex situations, and one person with disability A is not the same as another person with disability A. Furthermore, … the agency is making their own decisions about what the most important condition is. Regardless of what doctors tell them, regardless of what the participant tells them, and regardless of repeated challenges, they are deciding, ‘No, your primary disability is hearing loss and the other conditions don’t even count.’ That is not what the legislation says, that’s not what the case law says and it’s not fair or reasonable. It’s not how people are.”

The Bill does not resolve longstanding systemic issues such as this. It just makes the underlying practices lawful.

If this Bill passes, those who voted for it will be signing away the human rights of an entire generation. Co-designing the Rules will never be enough to fix the irreversible damage, even if that aspect of co-design is done properly.

In lieu of going back to the drawing board and co-designing this Bill properly, amendments addressing the issues our submission raises are critical to protecting the spirit of the NDIS Act, the human rights of participants and their families and loved ones, and making the NDIS work better for those who need it, not just those administering it.

1 Capability and Culture of the NDIA, Report – November 2023, hhttps://www.aph.gov.au/Parliamentary_Business/Committees/Joint/National_Disability_Insurance_Sc heme/CapabilityandCulture/Report/Chapter_2_-_Capability_and_Culture

National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024

Table of Contents

• Statement of (In)compatibility with Human Rights ………………………………………………………….. 1

  • Misrepresentation of compliance with Article 4(3) …………………………………………………… 1

    • Article 19(a) “Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement” …………………………………………………….. 2

• Passing this Bill will prevent us from aspiring to a life worth living by killing the golden thread to goals and aspirations ………………………………………………………………………………………………. 4

• Unpacking parallels with Robodebt culture in the participant experience ………………………….. 5

  • Robodebt parallels drawn in previous inquiries…………………………………………………………… 5

  • The Bill doesn’t resolve the systemic multiple impairments issue. It ensures we are stuck with it, just without ‘Primary’ labels. …………………………………………………………………………… 6

  • Robodebt parallels and the dangers of algorithmic power in the proposed Needs Assessment and ‘Reasonable and Necessary’ budget ……………………………………………….. 8

• How do these proposed changes bring us closer to Robodebt 2.0? ……………………………. 10

  • Renaming the Compliance Branch to “Scalable Integrity Responses” without publishing an ethics framework does not inspire trust ……………………………………………………………………. 11

• Legislating NDIA accountability to participants …………………………………………………………….. 12

  • Participants need an enforceable equivalent to the Compensation for Detriment Caused by Defective Administration (CDDA) Scheme …………………………………………………………… 12

  • Participants need the Model Litigant Obligations to be enforceable, with disability-specific assessment and reasonable adjustments for 2(f) ……………………………………………………… 12

  • Adopting the wording of obligations on CEO regarding mental, physical or financial harm to participant as a duty of care test in planning decisions ………………………………………….. 13

  • Procedural fairness starts with adding targeted reviewable decisions to shift the balance of power in review rights ……………………………………………………………………………………………. 13

• Legislating NDIA, DSS and Government accountability in co-design ……………………………… 14

  • The Government’s idea of co-design has an unconscious bias problem ……………………… 14

    • You can’t remedy unconscious bias while actively selecting for it ……………………………. 15

      • The Government does not believe people with disability have the capacity to be involved in developing legislation about us …………………………………………………………… 15

• We don’t just need to be in ‘the room where it happens.’ We need to be in there doing the hard work. ……………………………………………………………………………………………………………. 17

  • What would good co-design look like? …………………………………………………………………….. 18

    • Commitment to co-design means clear accountability in the primary legislation ……….. 18

    • When it comes to drafting legislative changes, co-design looks like the Government “assuming that we can” ………………………………………………………………………………………. 18

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Co-design means putting ethics and compassion at the heart of the NDIS, and ensuring people with lived experience evaluate this performance indicator …………………………… 19

Co-design is about being the authors of our own stories, because our stories are not the Government’s to write or control ……………………………………………………………………. 21

Endnote regarding procurement of external co-design evaluation ………………………………. 21

The last word……………………………………………………………………………………………………….. 22

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Statement of (In)compatibility with Human Rights

While we believe dedicated interrogation of this Bill’s compatibility with human rights is required, we wish to highlight two aspects of the UNCRPD.

Misrepresentation of compliance with Article 4(3)

The statement of compatibility with human rights claims compatibility with Article 4(3) of the United Nations Convention on the Rights of Persons with Disability (UNCRPD):

“Article 4(3) of the CRPD seeks to ensure necessary consultation with, and active involvement of, persons with disabilities in the development and implementation of legislation and policies.”

“The Bill is compatible with Article 4(3) through the clarification and expansion of the NDIS rules which relate to the access criteria. The new NDIS rules will be designed and implemented with extensive consultation and co-design with the disability community. In addition, the methodology for working out the amount of funding in a participant’s plan will be developed and built with the disability community.”

Minister Shorten, that’s a massive leap from what Article 4(3) actually says. It talks about the development —and implementation of legislation. The Rules are delegated legislation. One might call them the implementation of the amended Act. This Bill is incompatible with Article 4(3) because this process was skipped for the legislation itself:

“In the development and implementation of legislation and policies to implement the present Convention, and in other decision-making processes concerning issues relating to persons with disabilities, States Parties shall closely consult with and actively involve persons with disabilities, including children with disabilities, through their representative organizations.”

In General Comment 7, the scope of Article 4.3 states that:

“53. To fulfill their obligations under article 4 (3), States parties should adopt legal and regulatory frameworks and procedures to ensure the full and equal involvement of persons with disabilities, through their representative organizations, in decision-making processes and the drafting of legislation and policies concerning issues related to persons with disabilities, including disability-related legislation, policies, strategies and action plans.

States parties should adopt provisions granting organizations of persons with disabilities seats on, for example, standing committees and/or temporary task forces by giving them the right to nominate working members to these bodies.“

Even in the absence of an exposure draft, the Government should have “closely consulted and actively involved” people with disabilities, including the Participant Reference Group.

The failure to observe these obligations for changes to the primary legislation should be reason enough to go back to square one and try again, with full compliance.

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Article 19(a)

“Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement”

The push towards having a shared model of NDIS supports funding, with 1:3 support arrangements flagged as the new funding benchmark for those with higher support needs, directly breaches Article 19(a) of the UNCRPD.

The intent to leave this aspect of support for independent living wide open in the primary legislation – so that this controversial NDIS Review recommendation can be pushed through in new Category A Rules – does not change the Government’s obligations. It merely conceals these intentions from adequate scrutiny in deliberations over the tabled Bill.

Likewise, the NDIS Review panel’s assertions that the 1:3 ratio will not force people to live together, and that supports can be shared across households, is completely unrealistic and disregards the essence of Australia’s obligations under Article 19.

This cannot work in practice without forcing people into segregated communities, and even in a scenario where such ‘separate’ homes are nearby each other, the 1:3 benchmark will inevitably lead to reduced quality of care and serious adverse outcomes when overworked supports simply cannot oversee everybody’s complex needs due to the limited amount of support time available to each participant, and time lost trying to monitor participants across locations.

This model will place the health and safety of participants at risk, whether they assert their right to live alone and experience substandard care due to the above constraints, or are forced to share with other participants against their wishes and experience negative mental health outcomes or difficulties expressing their needs in a living arrangement they did not choose.

It is sickening to read the Redbridge research published on data.ndis.gov.au which reveals that the Agency and Government intended to force this recommendation through regardless of what people with disability told the NDIS Review, instead focusing on how to successfully persuade the public into accepting the intended changes with greatest potential to restrict this human right under the UNCRPD:

Changes to Supported Independent Living… Proof Points Provide Qualified Tolerance for Otherwise Unpalatable Reforms

“After presenting respondents with the above proof points that provide vital, believable context of reforms designed to benefit participants, we were able to elicit a degree of qualified tolerance for reforms that would restrict… the amount of support high-need participants would receive (moving to a 1:3 care model for Supported Independent Living participants). That is, respondents do not like these reforms but they may be willing to tolerate them where there are certain compensating factors.”

National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024

“In relation to the Supported Independent Living (SIL) changes, these become more acceptable when couched in benefits around reducing social isolation and ensuring people don’t fall through the cracks.” 2

The specific messaging used to gain buy-in, as referenced on page 37 of this research report, is as follows:

• “This change would be balanced by: a) improvements in outcomes for many participants, as the 1:3 model offers increased social connection and reduces isolation and b) innovation in the way support is delivered so people can live independently but with shared care, and avoid the old ‘group home’ model of care.”

We appreciate that for some participants, the social benefits are real, but this should always be a choice, not a starting point that will be extremely difficult to contest. The argument that this does not amount to maintaining group homes falls over when considering the type of congregated communities that will result from enforcing this recommendation.

The 1:3 shared support model might as well be group homes by another name because it will make participants with high support needs choosing where they live virtually impossible, regardless of whether they get some aspect of choice over whether or not it is under the same roof as other people with high support needs.

2 Redbridge, NDIA Reform Communications Testing: Round Two Focus Group Research Report October 2023, pp. 26-27, https://data.ndis.gov.au/media/3966/download?attachment

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PassingthisBillwillpreventusfromaspiringtoalifeworthlivingbykillingthegoldenthreadtogoalsandaspireations

Theweakeningofthecriteriabetweenourgoalsandaspireationstosupportsandspendingwillmakeitimpossiblyhardtodedefendsupportsolutionswhichmightbeuniquetous:Itnmakesthescopeandreletionstoourgoalsembiguouswhere-line-by-linplanninghadeffectivelypre-assessedmanysupporagainstourgoaLs.

Themoment‘flexible’budgetsareimplemented,allspendingwilleasierdefend.

IfweregoingintroduceproposedSection10definitionofNDISSupportswemustbringthegoldenThreadthattiesSupporttothePurposeoftheNDIS.Wemustbringleparticipant’slivedexperienceevidenceofwhichtsupportsaremoseffectivebeneficialforthem.WeMustBringthefreedomfortailedandFlexibleResponsesTotheirindividualneeds.goalsandspireationsWhichenablethemeLiveALifeOfTheirChoosing.

IfouregoalsandaspireationsAreNotBroughtintoSection10.ourobjectivesAndAspirationsAreworthlessANDndisSupporsWillnotDoTherJobInBuildingThePathTOSocialandeconomicParticipation,andalifeworthliving.IfthevalidityOflivedExperienceEvidenceIsNoTBroughtIntoSectioN10,itWillyLikelyBeDeletedAllTogether.AndWeWilLBeeStuckWith“Evidenc-Based”supportsThatNeglectLivedExperienCeAnDThePowerImbalancesInherentinscientificResearchTHatHaveHistoricallyMaintainedSystemicableism.

IfwenarrowtheoperationalDefinitionOFassistiveTechnologyFrom“equipmenttechnologyandedevicesThatHelpYoudothingsyoucan’tdobeauseofyourdisability[or]thingsthathelpyoudosomethingmoreeasilyorsafelY”,participantswillbeunabletaccesscountlesssistivitemsThatfulfilthispurpose.

IfrecognitionofthecollectiveandcompoundingimpactsofmultipleimpairmentsisnoteXPLICITLYformalisedinsection24anDBrughtintosection10,participantswillbenuabletoidentifywhichsupportsmettheirneedswithouttakingascalpelToTheirlivedexperience.andtooFrightenedOfdebtsbeingraisedifyouareunabLeToDoSo.iftheprinciplesofSection31-especiallythefreedomfortailedAndFlexibleSupports-arenottBrougHtinTOSection10.participantsWillNotBedAbletodedefendThetailedandflexiblesolutionsTheycreateforthemselvEsasNDISSupportS.

ifweregivena‘flexible’budgetthatwilleberestrictedsoheavilybyotherparameters,wemustprotectthegoldenthreadtotheoriginalintentofthenDis.Ifwefailtodoso, whatsThepoint?ItWIllBeALifeSentenceOFAministrativeTrauma,nOtSupporForAlifeWorthLiving.

“Idon’tknowtheexactwordsbutallIknowIsyourlifeStops.It’sjust–youmayasybe–yousMayAsWellHaveYourIdentityStrippedReally… youJust–YouCan’tDoAnything.it’S–Yeah.YoujUstStopExistingInAnOddWayBecauseYounStillLive,youstilhavefreedoms,butyoudon’thafreedoms.” 3

3 Uli Cartwright, Disability Royal Commission Final Report, Volume 3: Nature and extent of violence, abuseneglectandexploitation,p.207

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Unpacking parallels with Robodebt culture in the participant experience

Robodebt parallels drawn in previous inquiries

As Dr. Darren O’Donovan pointed out in his commentary upon release of the Robodebt Royal Commission report:

“The report leans heavily into the importance of pursuing a deeper change in our political life. This reflects the arguments of advocates that even if it had been lawful, robodebt was still a scandal…

Welfare advocates in this country can now forcefully critique any government program that trades on stigma or vulnerability and ignores real-life suffering.

That will now forever be known as robodebt governance.“[4]

In previously published testimony to the Capability and Culture of the NDIA inquiry,[5] Cat stated:

“I once again challenge the NDIA’s repeated rejection of our legitimate concerns in the absence of any evidence whatsoever to support the NDIA’s claims that the echoes of Robodebt culture we are worried about are not worthy of closer scrutiny.”

“These are my personal, visceral, contemporaneous reactions to watching the [Robodebt] Royal Commission proceedings, reading countless exhibits and submissions, and the growing sense of dread I experienced as I saw parallels in NDIA processes, agency culture, and my own NDIS participant journey emerge…

This is about stopping anything like Robodebt ever happening again. It’s about substantiating claims to ethics, subject matter expertise, and legality. It’s about safeguarding participants from the NDIA. And that goes to the heart of this inquiry.

I ask the Committee to take the concerns raised by myself and others about these echoes of Robodebt culture more seriously than the NDIS Minister and NDIA have to date, and not to accept the casual dismissals of such comparisons in the absence of transparent and robust evidence to support these rejections or associated claims to ethics.“

We feel the same applies to this Committee’s assessment of this Bill, and how the proposed legislative changes will impact participants if it is passed in its current form. As Dr. O’Donovan rightly pointed out:

National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024

“Robodebt stands as a warning against rose-tinted visions of the rule of law, or any idea our institutions are inherently self-correcting.”

A prime example of the NDIA’s failure to self-correct is identified in a recent ANAO performance audit report6, which found the following:

Systemic issues arising out of complaints

“The reasons categories [of NDIA complaints] are included; the systemic issues are not explicitly identified. The reason categories in reports lack sufficient detail to understand what complainants are dissatisfied with.”

3.48 As discussed in paragraph 3.5, while the NDIA has standard reports on complaints data that identify the most common complaint reasons or issues, these do not adequately show causes or potential systemic issues to enable identification of areas for continuous improvement.

3.52 Regular and comprehensive analysis of complaints data is important as the broad range of potential reasons for complaints can indicate emerging trends or issues not readily apparent from analysis of other NDIA service delivery data alone. The NDIA’s linkage of data on complaints with Administrative Appeal Tribunal (AAT) reviews also requires further analysis as the reports containing these outcomes only identify areas requiring further investigations rather than identifying specific systemic issues.

A frequent claim by public servants and politicians at the Robodebt Royal Commission was that they “didn’t turn their mind to” questions of lawfulness, ethics and other potential adverse impacts. We observe that in this instance, it is much easier to claim one did not turn their mind to the impacts of systemic issues if systemic issues are not being properly captured, identified, and reported on.

There is a great deal of talk about “continuous improvement”, but very little input, let alone co-design, on how to achieve continuous improvement. It seems to be another approach to be seen as self-correcting, without taking accountability for mistakes and systemic issues by adequately capturing and reporting on them or co-designing solutions to them.

We are deeply committed to our roles in co-design, but acutely aware of its limitations. We therefore urge the NDIA and Government to make corrections where this Bill would allow that, rather than self-correct, a systemic issue could be made lawful: even if it causes harm.

The Bill doesn’t resolve the systemic multiple impairments issue. It ensures we are stuck with it, just without ‘Primary’ labels.

One parallel which has drawn significant scrutiny and comparisons to Robodebt in previous inquiries is the NDIA’s treatment of multiple impairments.

6 Management of Complaints by the National Disability Insurance Agency, Australian National Audit Office, https://www.anao.gov.au/work/performance-audit/management-complaints-the-national-disability-insurance-agency

National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024

Yet, the first legal “reform” shows the Government and NDIA intend to maintain the status quo, just lawfully and without ‘primary’ and ‘secondary’ categories. The impairments recognised will still be whatever the NDIA decides.

Below is a recent example of how the Technical Advice and Practice Improvement Branch is treating assessment of s24(1)(c) in practice; specifically, the refusal to consider the collective impact of impairments on a participant’s functional capacity:

“Due to her diagnoses of ASD and EDS, it is difficult to ascertain how the Applicant’s diagnosis of ADHD alone, has substantially reduced her functional capacity. As such, it is unlikely that the addition of a secondary disability for ADHD in the context of a primary listed disability of ASD, will alter support needs significantly for the participant.”

This is the Robodebt problem participants with multiple impairments are worried about. We are being asked to take on trust that Compliance will never try to “ascertain” whether various purchased supports are, for example, ADHD- or autism-related. The fears of participants are regularly echoed by advocates and legal experts, such as those who warned the NDIS Joint Standing Committee and NDIS Review about the compliance implications of this issue.

Now, it has been proposed as legislation, without addressing the absence of procedural fairness arising from the NDIA’s systemic mishandling of requests to have all permanent impairments recognised. The proposed legislation brings us closer to the Robodebt 2.0 scenario, but with legal cover for the harm the government will have increased scope to perpetrate on participants with multiple impairments.

From a participant point of view, the NDIA is abusing the absence of a separate reviewable decision for declined impairments to funnel participants into plans for only the approved impairments, and to prevent them reviewing the decision to decline some impairment(s) before planning.

This means they can only have declined impairments reviewed by proceeding with an initial plan recognising Impairment X (e.g., the ‘access met’ impairment according to the NDIA), and then have to submit a Section 48 change of circumstances request to add declined impairments – because planners never do at the initial planning meeting – or submit a Section 100 review of a reviewable decision request to appeal the entire statement of participant supports; which risks the whole plan being cut, or the participant being trapped in Tribunal proceedings for years, with impairment decisions being judged against Section 34 criteria (such as value for money) or used to deny certain supports as being related only to the declined impairment.

The entire time, the participant is vulnerable to Compliance audits resulting in a debt being raised if Compliance officers decide funds spent relate to the declined impairment rather than the ‘access met’ impairment.

From a purely financial point of view, drawing out such appeals processes as long as possible suits the NDIA’s bottom line, because the supports funded - or the overall budget, if this Bill passes - is based only on the accepted impairment, and there is no ‘backpay’ as such if declined impairments are ultimately accepted. The Agency can approve much lower

National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024

value plans, while the participant’s only escape from the cycle of appeals is to accept that not all permanent impairments are formally recognised.

In the short term, this looks like the Agency protecting Scheme sustainability.

However, this strategy can ultimately contribute to functional decline of the participant if critical supports for rejected impairments are delayed, or the overall level of basic Core supports underfunded while stuck in this appeals process. This makes such participants far more expensive to support in the long term.

The Agency frequently refers to ‘plan inflation.’ Whether inter- or intra-plan inflation, how much of this is truly ‘inflation’, and how much so-called ‘inflation’ is just participants fighting to get the funding they always needed and deserved in the first place, so their quality of life doesn’t get worse?

It is essential that the Committee advocates for amendments to this Bill which reflect the evidence heard in previous inquiries and the NDIS Review, and the need for this Bill to legislate NDIA accountability and procedural fairness for participants who meet the access threshold based on the collective - and often, compounding - impacts of all permanent impairments, not to legislate the unfair practices the NDIA, DSS and the Government have seemingly inserted into the Bill.

Participants with multiple and complex disabilities deserve to be considered as whole people, whose disabilities can be as much about the intersections between impairments as the impairments themselves.

Robodebt parallels and the dangers of algorithmic power in the proposed Needs Assessment and ‘Reasonable and Necessary’ budget

In their paper Unveiling algorithmic power: exploring the impact of automated systems on disabled people’s engagement with social services,7 which examines the abandoned Independent Assessments, the researchers identify the potential harm and epistemic injustice associated with the use of algorithmic tools to calculate disability support needs, and the inherent incompatibility with the social model of disability:

“Concerns about technology’s impact on resource allocation in disability support regimes include insensitivity to individual lived realities and reduction of disability to a score of bodily functionality. To avoid harm to disabled people, the research recommends an approach to assessment that better addresses contextual factors and lived experiences of disability.”

“Our findings suggest that disability is made legible through the use of proxy concepts from health and medicine, which has a number of political and ethical implications.”

7 Georgia van Toorn & Jackie Leach Scully (13 Jul 2023): Unveiling algorithmic power: exploring the impact of automated systems on disabled people’s engagement with social services, Disability & Society, DOI: 10.1080/09687599.2023.2233684

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For instance, the concept of functional capacity, while amenable to easy computation, reveals very little about the social dynamics of disablement. We show that this approach to the quantification of embodied difference overlooks and misrepresents the realities of disabled lives, while obscuring issues of social injustice and inequality. It also points to issues of epistemic injustice arising from the ongoing privileging of biomedical technoscientific approaches over alternative knowledge systems, including social and relational models of disability.”

We are being promised that the new Needs Assessment will be different to Independent Assessments, but the following concerns remain:

• We do not yet know how the proposed needs assessment tool will avoid the harm and inequity predicted if the earlier Independent Assessments had proceeded; we have only been promised it will be different.

• The approach outlined seems to default to a medical model in which the assessor will be required to assess participants only in respect of impairments meeting the access criteria. This is a significant departure from the ‘whole person’ needs assessment it is being marketed as.

• The approved impairment-based approach implies that the NDIA will continue pigeonholing participants with ‘primary disability thinking’.

• We do not know whether the data used to translate needs assessment into funding amounts will be the compromised dataset the NDIA has built over the past decade which relies entirely upon ‘primary disability thinking’ to decide what ‘similar disability-related needs’ should look like.

Other advocates have confirmed they have been advised that needs assessment will be undertaken by NDIA staff or contractors. Even if these assessors are allied health professionals, this path is fraught: How will such assessments be trauma-informed? Culturally safe? Tailored to individual communication needs? How will assessors account for involuntary masking of our struggles, or the delayed consequences of exertion?

Why should any agency assessor be deemed more qualified to assess support needs than the professionals who best know a participant and their daily struggles? When Independent Assessments were on the table, it was argued that the validity of a participant’s own professionals would be clouded by empathy. Yet, they are bound by professional codes. Isn’t the bigger conflict of interest the intention for Needs Assessors to simultaneously be Budget Setters?

“I view that the medical opinion that was relied on to put me into the original administration orders was uninformed - it was by a doctor that I felt didn’t know me or my financial decision-making ability, and it was a tick-box exercise.”

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Bill[Provisions]

IfIamgoingtohavemyrightstakenfromme,shouldnttheevidencesayingthatIcon’tmake decisionsbestrongerorbulletproof?Whywasitexpectedthathadtogetmedicalevidence sayingIcouldmakedecisions?”8

AsUli’saboveevidencetotheDisabilityRoyalCommissionaptlydemonstrates,itistoolatefora professionalwhodoesnotknowanindividualwellenoughtomakerashdecisionswithdireandlong- termconsequences.Infact,inthisinstance,therewasnevenanyfurtherassessmentundertakentohisfinancialdecision-makingability,orthishowthiswascallegedlyimpactedbyhisrecordedisability.

WefeelthisisthestrongestargumentagainsttheNeedsAssessmentbeingconductedy任何人otherthantheme dicalandaliedhealthprofessionalsaparticipanttrustsmostandchoosesforallthemselves.

HowdotheseproposedchangesbringuscloserToRobodebt2.0?

A5Dr.O’DonovanstatebeforetheRobodebtreportwasreleased:

“Robodebtusedbehavioural economicsapproachestoengineerfeelingsofshameandpreventlegalconsciousnessfromforming.Itgamedouradministrativelawsystemtooverwriteorrapturethedebtsoftosewho didcomplainwhilenothingchangedonthefrontline.

Itimposedanadministerativeburdenonthoseunabletocarryit.confidenttheywouldtriagetrauma andcop thedebt.”9

TheNDIAandtheGovernmentmustrecognizetheharms theycanperpetrate onparticipantswithouteverraisingadebthroughtheshearweightoftheadministrativeburdensweareforced tocarry,justtoaccesssupportwened.

AsMortimerJremindedtheAgencyintheFederalCourtdecisionknownasNDIavDavis:

“[Questions] oftheconstructionandoerationoftheNDISActshouldbeapproachedwithareasonable degreeofcommonsense.TheNDISActisbeneficialandremediallegislationdesignedtooerateinrelativelyhighvolumedeision-making,ina pragmaticcontext,andinrespectofpeople(andtheirfamiliesandcarers)alreadyfacingsgreatchallengesindaily lives.“10

8DisabilityRoyalCommission.EXHIBIT30-062STAT.0659.0001.0001-WrittenstatementofUliCartwright, hhtps://disabilityroyalcommission.gov.au/publications/exhibit-30-062-stat065900010001-written-statementuli-cartwright

9DarrenO’Donovan,Theculminationofyearsofsuffering:Whatcanyouexpectfromtherobodebtroyalcommissionsfinalreport?,https://theconversation.com/the-culmination-of-years-of-sufferingwhat-can-we-expect-from-the-robodebt-royal-commission's-final-report-202337

10National DisabilityInsuranceAgencyv Davis [2022]FCA 1002 (29August2022)

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Renaming the Compliance Branch to “Scalable Integrity Responses”

without publishing an ethics framework does not inspire trust

At Senate Estimates in December 2022, the Agency asserted that any compliance activities involving participants would be ethical, including the use of behavioural economics. However, Agency executives revealed at a February 2024 Estimates session that there had never been an ethics committee.

It is essential that a clear ethics framework with consideration of the potential risks and impacts on people with disability is published before participant-directed compliance activities are made “scalable” to ensure potential adverse outcomes are addressed now.

More importantly, this ethics framework must be co-designed to ensure all risks are captured, including the unique impacts of such behavioural approaches on people with different disabilities. Only then can ethics be claimed and should still be continually reviewed by the people it impacts.

We ask the Committee to consider this concern as a matter of urgency, particularly in the context of the risks we have identified in the proposed legislative changes.

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Legislating NDIA accountability to participants

Earlier this year, we and our NDIA Participant Reference Group colleagues finalised our Accountability Statement, which outlines what we expect from each other, but also from NDIA business teams who seek our advice.

It is disconcerting that we have no such accountability from the NDIA in the NDIS Act at present, but even more chilling that the proposed legislative changes ask for so little accountability from the NDIA in their dealings with participants, whilst holding participants to a higher standard and administrative burden than ever.

The question must be asked: Why are people with disability forced to prove our integrity endlessly, not only our disabilities? Why must we prove that we are worthy of living a normal life?

These practices reflect the Australian society’s perceptions of people with disability, but they also reflect a narrative the Government has cultivated and reinforced, while failing to protect participants and their families from the harms these administrative burdens and perceptions cause in our daily lives.

We propose accountability measures with legal teeth, such as the following, are explored.

Participants need an enforceable equivalent to the Compensation for Detriment Caused by Defective Administration (CDDA) Scheme

Unfortunately for participants, the NDIA is exempt from the CDDA Scheme due to its status as a Corporate Commonwealth Entity. We ask the Committee to research all legal avenues for participants to have access to financial recourse for administrative harms.

Participants need the Model Litigant Obligations to be enforceable, with disability-specific assessment and reasonable adjustments for 2(f)

The imposition of an “administrative burden on those unable to carry it, confident they would triage the trauma” that Dr. O’Donovan describes in relation to Robodebt is a burden NDIS participants and carers who have sought external review through the Administrative Appeals Tribunal are all too familiar with.

Contrary to Government narratives, participant accounts – and even AAT decisions – continue highlighting the litigious practices of NDIA representatives and legal counsel.

We note that Model Litigant Obligation 2(f) does not specify that the obligation not to “take advantage of a claimant who lacks the resources to litigate a legitimate claim” relates solely to monetary resources. We ask for greater protection of the energy, cognitive and emotional resources of participants who are frequently triaging enough NDIA demands in their daily lives before resorting to external review.

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Adopting the wording of obligations on CEO regarding mental, physical or financial harm to participant as a duty of care test in planning decisions

It is concerning that the only legislated positive duty of care on the CEO to prevent harm through planning decisions is to impose controls on how a participant’s plan is spent.

We suggest that an equivalent positive duty of care to prevent harm exists when “the participant would be likely to suffer physical, mental or financial harm” if the CEO or their delegate decides not to approve a recommended support, and that such a positive duty of care should also be made explicit in the primary legislation, as it currently is for plan management type.

Some associated recommendations include:

• Co-designing updates to risk matrix and planning risk assessments to include risk arising from the absence of Capital funding and approval for critical Assistive Technology supports.
• Legislating a ‘Ryan’s Rule’ type of participant-initiated escalation process with authority to fast-track urgent requests; including to intervene in AAT cases.

Procedural fairness starts with adding targeted reviewable decisions to shift the balance of power in review rights

A few notable omissions include:

• A decision to decline a specific impairment, at the time of being granted access or at any other time.
• A decision that a specific support is not an ‘NDIS support’ for a participant, or for a class of participant.
• A decision that a NDIS amount has been spent in contravention of Section 46, rather than the status quo of only being able to appeal the associated debt once raised.

We invite the Committee to explore the full list required to offer participants greater procedural fairness with the many legal experts who will no doubt be providing their own submissions.

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Legislating NDIA, DSS and Government accountability in co-design

Before we can talk about the co-design we want and need, we need to talk about why co- design isn’t working.

The Government’s idea of co-design has an unconscious bias problem

Co-design implies that two or more parties are designing something in partnership from the beginning, but the Government’s understanding of co-design seems to be something very different: A process designed to give the impression our voices are heard without ever truly listening, while controlling the conversation.

At its core, this unconscious bias is an attitudinal, cultural, ableist perception of people with disability which reinforces low expectations of our capacity.

In Government co-design, unconscious bias manifests as assumptions that keep us from contributing everything we have to offer. For example:

• The assumption that the ideas and skills of public servants are inherently superior to those of people with disability.

• The assumption that people with disability lack the skills and capacity to do the real work, rather than assist (or merely give feedback on) the work.

• The assumption that people with disability bring nothing else valuable to the table.

• The assumption that it is necessary to try and frame all feedback in a positive and constructive light.

• The assumption that we do not have the capacity or understanding, and that public servants do.

Unconscious bias also manifests as actions, such as:

• Asking for feedback after the important decisions have already been made.

• Pre-defining the scope and telling us what we are allowed to contribute, rather than asking us what we can offer.

• Those with the power to make the biggest decisions about us not taking participants seriously as “stakeholders.”

• “Deliverables” being determined by Government, agencies, senior executives and business areas, rather than giving participants the opportunity to identify projects that would have meaningful impacts for genuine “continuous improvement.”

• Asking people with disability to mark the work of public servants, rather than inviting us to do (and lead) the work.

• Treating people with disability as though we are lucky to have a chance to give feedback, rather than co-design as an opportunity for public servants to learn.

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You can’t remedy unconscious bias while actively selecting for it

These “capabilities” are from NDIA job descriptions published on Sunday 5th May, for EL1 and APS5 roles within the Service Guidance branch respectively:

• “Influencing: Using effective involvement and persuasion strategies to gain acceptance of ideas and commitment to actions that support specific work outcomes.”

• “Stakeholder Management: Communicate with and provide advice and recommendations to a wide variety of customers and external stakeholders. Some matters are likely to be contentious or complex issues that have scope for alternative interpretation requiring tact, persuasion and sensitivity within the application of guidelines.”

The fact these roles are selecting for a bias towards persuasion and gaining acceptance of predetermined ideas as the starting point for participant and stakeholder engagement is illustrative of Agency priorities and the power imbalance even when “co-design” of Operational Guidelines is undertaken: the Agency is selecting for people who can persuade stakeholders to do what they want, rather than people who are committed to listening to what stakeholders need them to do. Who says the Agency has identified the right outcomes?

This attitude is reflected in the Redbridge communication research11 on ‘palatable’ messaging for key NDIS reforms, which reflects the serious problems we have identified with co-design, on a much larger scale.

Why is the Agency more invested in communication strategies to persuade participants and the public into “qualified tolerance” for “unpalatable” reforms, than in changing its own behaviour and listening to the reforms we want?

Messaging is not the problem here. The one-way conversation is.

The Government does not believe people with disability have the capacity to be involved in developing legislation about us

At present, the Government, DSS and the NDIA are all overlooking the fact that people with disability – especially lived experience advisory groups such as the PRG – have so much more to offer and are capable of so much more than those in power believe, that they have totally misunderstood what co-design means and how their respective approaches to co- design need to change in order to be effective.

The simple fact is that we already know more about what is needed and how to do it than the Government does, and we are tired of the epistemic injustice every NDIS participant is familiar with, and the endless epistemic exploitation involved in the limited scope we have to be heard in defining potential solutions through existing co-design approaches which start from the unconscious bias that we have little to offer.

11 Other analyses: Community Research, https://data.ndis.gov.au/reports-and-analyses/other- analyses

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Would it be such a bad thing to let us into ‘the room where it happens’ if it meant we could — help fix the NDIS and ensure its sustainability?

Because the same powers that be who keep talking reform and systemic change seem to be the most resistant to letting us help them create the change we need.

This resistance comes from an attachment to outdated perspectives that the Government knows better than people with disability. This Bill is evidence that they do not.

When the Government admits that the first step in solving any problem is to admit that you have one, people with disability will be ready to partner with the Government to do the hard work of change. It is beyond time that the Government, DSS and the NDIA did that hard work with us, by dismantling the systemic ableism and bias that has kept us out of the most important conversations, and by enabling us to be stakeholders in a meaningful way.

The fact we are having trouble articulating our insights around the type of co-design we need into a framework that can be digested into a bureaucratic enough form to insert into legislation is part of the problem: This is, first and foremost, an ethics and human rights problem.

It is a problem rooted in the Government being unwilling to share power with people with disability, and unwilling to acknowledge both the value of our lived experience and our capacity to take part in the drafting of legislation that impacts the most intimate parts of our daily lives.

The Government would rather try to digest their view of how our daily lives should look intoureaucratic rules on their own, than listen to us about how it will impact our daily lives and their bottom line. The irony is that this Bill misses the mark by so much that it will likely cost Australia a great deal more in the coming decades, as a result of unmet needs.

Unfortunately, the divide between the Bill that was tabled and the legislative architecture we need to move forward with co-design of the Rules is so large that we see no practical solution other than the Government accepting the uncomfortable reality that they will need to collaborate properly – and transparently – with people with disability to rewrite this Bill from scratch with the lived experience expertise it always should have been shaped by.

Our strong impression is that the Government knew people with disability might tell them how many mistakes they had made or disagree with major changes, and that the Government cared too much about minimising that embarrassment and controlling the narrative to let us see a draft of this Bill.

This contribution of lived experience should be valued and amplified, not wasted, because in some situations and for some people with disability, this is the only participation they will have, and the only opportunity to make their voice heard. Collectively, we can all do better than that.

National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024

If the Government were not so defensive, they would discover that we can disagree productively. That we can use conflict as a valuable tool to find our way to the best outcomes.

That we know how to do so respectfully, with our focus firmly on the end goal: Not to convince or persuade people with disability to accept their stories being written for them, but to build the legislative and policy architecture we need for them to write their own, and for the NDIS to survive for future generations to do the same.

Conflict has been a deliberate part of our process in writing this submission and pushing each other to consider different perspectives.

We know it not only works but is essential.

We know it is the key to finding common ground.

The Government need not be afraid of negative feedback given fearlessly and in good faith.

It means we are ready to get to work, together.

We don’t just need to be in ‘the room where it happens.’ We need to be in there doing the hard work.

If the Government trusted the lived experience expertise of groups such as the Participant Reference Group, they would let us do the real work in partnership with them.

Between the two of us alone, we have substantial experience in campaigning for legislative changes and systemic change through scientific research and grassroots engagement.

We are just two members of 23 in the PRG. What other valuable skills and insight are the Government and Agency missing out on by underutilising groups like ours? We have knowledge that the Government never will because they have not lived it.

Groups such as the PRG have the diversity of skills and lived experience to achieve outcomes that would fix the problem once, first time around, because we will bring ideas nobody else in the room could ever put together, let alone transform into a solution.

We could have identified problems with this Bill before they were ever drafted, and fixed them long before it was tabled, because we know how to listen to each other’s perspectives and find compromises and solutions we might never have thought of alone.

We learn from, mentor, support, and push each other to be better, and to do better work.

If we are not in the room, doing the work, co-design is nothing more than a tokenistic gesture. If the Government intends to claim that subsequent legislative instruments are co-designed, they need to do it properly and break down barriers that prevent transparency, candid discussions, direct inclusion of lived experience such as the PRG, and barriers between agencies and the relevant sections of Government involved in developing the primary and delegated legislation.

This includes addressing the unintended consequences of Australian Public Service (APS) Code of Conduct constraints around impartiality, where the requirement to be apolitical can inadvertently become a barrier to dismantling systemic ableism and opening communication

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• channels between people with lived experience, agencies, the government, and the states,
• for more effective co-design beyond the scope of current NDIA and DSS approaches.

The status quo does not allow the co-design process to be transparent. It prevents everyone from ever being on the same page because too much is kept in confidence and siloed within co-design areas or withheld from people with lived experience entirely.

This means if you do not work for a particular area or agency, you never know what the intended outcomes are. Priorities always shift and there’s little trust due to control over communication between agencies, the government, and co-design participants. Every segment is far too risk averse when it comes to taking a leap of faith and facilitating open frank fearless conversation, for reasons as basic as wanting to avoid perceived breaches of impartiality requirements.

The result is that the outcomes we’re seeing in key areas - including the bill tabled in parliament - skew heavily towards political and budget motivations since they lack the hefty dose of reality that lived experience would have offered.

We believe specific processes need bypassing these constraints imposed by APS Code Of Conduct To facilitate Frank And Fearless Communication Between People With Lived Experience And every Area That Needs To Hear What We Have To Contribute.

We don’t have public servants’ constraints which makes us inherently frakner more fearless than they can ever be permitted to be.

What Would Good Co-Design Look Like?

Commitment To Co-Design Means Clear Accountability In The Primary Legislation

It Is Essential That A clear Co-Design Framework Be Embedded In The primary legislation As An amendment To This Bill Before The Government Starts Talking About New Class A Rules Because The Government Has Not Earned Required Trust For Us Take Promises That The rules Will Be Co-designed On Faith Alone.

This framework must be produced drafted with lived experience experts It Makes Sense Utilize IAC PRG Purpose take advantage existing infrastructure confidentiality agreements enable work completed timely manner. this requires no new infrastructure: it requires only effort connect relevant parts government agencies involved genuine commitment acknowledge listen expertise already access not utilising.

When comes drafting legislative changes co-design looks like government “assuming we can”

The governments unconscious bias problem boils down assuming lack capacity for most important work. point them brilliant Madison Tevlin’s viral video World Down Syndrome Day ask government assume that we can:

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Assumptions:

• Assume that we can expertly advise parliamentary drafters and DSS on the overhaul the proposed legislation demands, and the implications they have missed without our input: It is people with lived experience who immediately identified the biggest problems in this Bill and how to fix them.
• Assume that we are capable of expertly advising the Government throughout the drafting process for subsequent legislative instruments, so we get those right the first time: We ask the States to assume that we can, and insist that we do, before they are asked to approve these instruments.
• Assume that we are more invested in the sustainability of the NDIS than anybody else: As experts on our own lived experience and support needs, we know how to meet those needs most economically and effectively.
• Assume that we are just as invested in foundational supports because we care about all Australians living with disability and refuse to leave anybody behind: We know we cannot get NDIS reform right without building the foundational supports needed first.
• Assume that our ideas are just as valuable as those of public servants, and that lived experience advisory panels including the PRG are just as qualified to submit New Policy Proposals and Cabinet Submissions as public servants: After all, it was a public servant’s NPP that ultimately became Robodebt.
• Assume that lived experience advisers can engage in frank and fearless collaboration and compromise in the development of policy and legislation that directly affects people with disability: APS constraints of impartiality and the requirement to be apolitical are a significant barrier to our contributions being heard. If public servants are not fearless enough to put our feedback forward without weakening it, we need mechanisms to put our ideas forward formally ourselves.
• Assume that participant-led and participant-defined priorities and “deliverables” can get the Government where it wants to go, much faster and more effectively than the Government can without our direct input: Filtering our feedback through NDIA co-design and highly controlled DSS engagement is not sufficient. Nobody should be speaking for us, and too much gets lost in translation. Let us say what we mean, directly, to help the Government achieve the right solutions the first time.
• Assume that negative feedback and conflict is one of the most important ingredients of successful co-design: Assume that conflict means we are already invested in finding the solutions. Assume that we know how to fight fairly.

Co-design means putting ethics and compassion at the heart of the NDIS, and ensuring people with lived experience evaluate this performance indicator

As Uli puts it, “If my doctors didn’t co-design me, I’d be dead.”

In trying to capture what has informed his own approach to co-design for this submission, we talked about how one particular doctor approached his care:

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Some of the most important answers to “What would do?” we discussed in a co-design context are:

     1.  Talking to the people a decision will affect about the impacts before doing anything
        else and being transparent and honest about expectations.

     2.  Working together from the ground up to define the purpose of the work and the
          ethical, practical steps that will be least restrictive on the person's human rights,
       always ensuring that every step takes care not to limit other options for the person.

     3.  Explaining the implications and facilitating open and frank dialogue with everybody
        involved to ensure you have all the necessary information, big and small, before
      making a decision that will impact somebody.

     4.  Being very clear about what your purpose is in the situation, and what every single
       person brings to the co-design problem: Everybody would have a clear role, know
      where they stand, and know their work and their worth in the situation.

     5.  Taking great care to put the person a decision will affect in the driver’s seat, to the
     maximum extent possible.

     6.  Being humble, reflective, relatable, and ready to admit getting something wrong,
        especially when it is about keeping people safe; and respecting the integrity of
         relationships enough to break bad news personally and explain why.

     7 Never allowing other people or interests to influence a person’s decision.

     8.  Supporting the person to consider all perspectives and figure out the solution to a
      problem for themselves without influencing them, to ensure they can choose for
       themselves and be certain in their decision.

We believe that, at the heart of this discussion, this is the difference between the current NDIS Act and its intention, and the proposed legislative changes: The Bill that was tabled lacks the humanity of the original social model perspective and the ethical, compassionate approach to co-design that comes naturally to people like Uli who have lived it.

And we cannot make the NDIS work without it. Genuine co-design would have found a way to make this perspective part of the fabric of the NDIS, and we cannot move forward without a legislated commitment to doing this most important part of the work.

That commitment must legislate accountability in co-design from the Government, the
 States, and the Department of Social Services; not just the NDIA. That commitment must
begin with recognising the capacity of people with disability to lead this work and do it well,
because the Government cannot do it well without us.

                        "It’s what you’ve got to say that's the good thing."\n
                ~ Professor John Massie, Life is a Battlefield 12\n
   12 Life is a Battlefield, https://www.sbs.com.au/ondemand/tv-program/life-is-a-
 battlefield/1973886019956\n
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Bill[Provisions]2024

Co-design is about being the authors of our own stories, because our stories are not the Government’s to write or control

Co-design is a mechanism for us to take back control of our own stories. That might be a somewhat frightening concept for the Government to grapple with, but grapple with it, they must, because this is what compliance with Article $4(3) of the UNCRPD looks like in practice: Letting people with disability co-design the laws and policies that enable us to be the authors of our own stories and the captains of our own ships.

That is how we realise our own goals and aspirations as well as those of the NDIS Act.

It should matter to the Government because it is international law. But more importantly, it should matter to the rest of Australia, because this is how people with disability can achieve the level of social and economic participation that allows us to contribute and give back in the most valuable ways each of us has to offer.

Endnote regarding procurement of external co-design evaluation

On the 3rd of April 2024, the NDIA formally responded13to a written Question on Notice from the February 2024 Additional Estimates round regarding evaluation of co-design, confirming:

Question: In September 2023, the Co-Design Advisory Committee resolved to undertake a review of the co-design process.

a.What istimeframefor thereview?

TheCo-Designevaluationisexpectedtotake6months.

b.Willtheyproduceapubliclyavailablereport? TheCo-DesignAdvisoryGroupwillreceivethefinalevaluationreport.Asummaryoftheoutcomesofthereview willbe publishedonthenationalDisabilityInsuranceScheme website.

c.Whowasawardedthec forthereview? Theprocurementprocessforanindependentevaluationpartnerisnowcompletewiththesuccessfultenderer expectedtobenotifiedinthemidtolateMarch2024.Itisepectedtheworkforevaluationwillcommencebythe endof Marchor earlyApril2024.

d.Howmuchbudgethasbeenallocatedforthistreview? Thernational Disability InsuranceAgency has allocated $200,000 forthefcontract.

We do not yet know who has been appointed to complete this work but again ask: Why does our advice always take second place to that of those profiting from us, or making decisions and recommendations about us?

More importantly, why spend another $200,000 on external advice rather than asking those of us already involved in NDIA co-design what isn’t working, and how we can get it right?

13NDIASQ24-000032,$https://www.aph.gov.au/api/qon/downloadattachment?attachmentId=b7588f3f-bda3-4aad-91ab-d47ca147c949

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National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024

The last word

The following is taken from the webinar Team DSC hosted with administrative law expert,
 Dr. Darren O’Donovan, in response to tabling of the Bill14.

Three thousand people tuned in. These are the thoughts Dr. O’Donovan left us with.

      “Someone else said, I want the NDIS to support me well enough that I could go study under
          Dr. Darren O'Donovan...”

          “I’m actually a little bit choked up by that...

        Every year I walk in and I ask, where are the students with [disability]... I’ve worked the last
        couple of years in this course coordinator role where I’ve met so many students with
            disabilities seeking adjustments.

      So like, that’s the issue, isn’t it, you know? And that’s the change. That’s where we’re all
           trying to get to...

        That’s what we can unlock if we just keep the investment frame on things…

        Fundamentally, what you take away from today... Whatever the working method produces, if it
        underfunds the person, that’s an issue too…

       Because my fear would be that, you know, if there’s particular parts of the formula that are
        underperforming for particular people, those people start to slip up the level of need. And
     we get a very defensive Scheme then…

                  I wanted to end by saying to everyone, everything I said today doesn’t matter a jot compared
          to supporting people with disability… Because outcome is the thing that changes
         everything.”

As Uli put it at the end of his film, Life is a Battlefield:

       “People with a disability don't want to be treated like they’re disabled. We want to be
        treated like everybody else, because we are like everybody else, just unique...
      People with a disability have the right to live happy and meaningful lives, just like
      anyone else. It’s taken me a long time to truly appreciate and understand the support
          this world has given me...

     The NDIS gave me the flexibility with my funding to engage support workers that I
       chose. Choice, and control. This is the fundamental principle of disability care. And
                I was lucky enough to mould the support services that I needed to succeed...

          I’ve got a message for the world – a message of compassion, a message of trust, a
     message of care, and a message of kindness...

       For me, honestly, just waking up every day feeling more socially accepted than ever
        before, to have friends, to be a young adult, to tell my story and be speaking about
       issues I care about, this is MY achievement, and nobody can take that away from
       me.”

   14 The New NDIS Bill: Getting Across the Detail, Team DSC, https://vimeo.com/933559386

                               Cat Walker & Uli Cartwright                     Page 22