NDIA Accountability Project

Co-design concerns regarding NDIS reforms and participant representation

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Community Affairs Legislation Committee

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

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.

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.

Cat Walker & Uli Cartwright ii

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

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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’ have 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 o 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

Cat Walker & Uli Cartwright iv

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

Cat Walker & Uli Cartwright vi

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 fulfil 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.

Cat Walker & Uli Cartwright Page 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”

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.”

“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

Cat Walker & Uli Cartwright Page 3

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

The weakening of the criteria connecting our goals and aspirations to our funding and
spending will make it impossibly hard to defend supports solutions which might be unique to
 us: It makes the scope and relationship to our goals ambiguous where line-by-line planning
had effectively pre-assessed many supports against our goals.

The moment ‘flexible’ budgets are implemented, all spending will be harder to defend.

    If we are going to introduce the proposed Section 10 definition of NDIS supports, we must
 bring the golden thread that ties support to the purpose of the NDIS. We must bring the
 participant’s lived experience evidence of which supports are most effective and beneficial
  for them. We must bring the freedom for tailored and flexible responses to their individual
needs, goals and aspirations which enable them to live a life of their choosing.

    If our goals and aspirations are not brought into Section 10, our goals and aspirations are
 worthless and NDIS supports will not do their job in building the path to social and economic
 participation, and a life worth living. If the validity of lived experience evidence is not brought
 into Section 10, it will likely be deleted all together, and we will be stuck with “evidence-
based” supports that neglect lived experience and the power imbalances inherent in
  scientific research that have historically maintained systemic ableism.

    If we narrow the operational definition of assistive technology from "equipment, technology
and devices that help you do things you can’t do because of your disability [or] things that
 help you do something more easily or safely", participants will be unable to access countless
 assistive items that fulfil this purpose.

    If recognition of the collective and compounding impacts of multiple impairments is not
  explicitly formalised in Section 24 and brought into Section 10, participants will be unable to
 identify which supports meet their needs without taking a scalpel to their lived experience,
and too frightened of debts being raised if they are unable to do so. If the principles of
 Section 31 – especially the freedom for tailored and flexible supports – are not brought into
 Section 10, participants will not be able to defend the tailored and flexible solutions they
 create for themselves as NDIS supports.

    If we are given a ‘flexible’ budget that will be restricted so heavily by other parameters, we
must protect the golden thread to the original intent of the NDIS. If we fail to do so,
 what’s the point? It will be a life sentence of administrative trauma, not support for a life
worth living.

          “I don't know the exact words but all I know is your life stops. It's just - you
    may as well be - you may as well have your identity stripped really…

     You just - you can’t do anything. It’s - yeah. You just stop existing in an odd
     way because you can still live, you still have freedoms, but you don’t have
      freedoms.” `redacted`

   `redacted` Uli Cartwright, Disability Royal Commission Final Report, Volume 3: Nature and extent of violence,
 abuse, neglect and exploitation, p. 207

                               Cat Walker & Uli Cartwright                      Page 4

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 inquiry5, 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:

“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 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

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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

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

Cat Walker & Uli Cartwright Page 8

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.”

Cat Walker & Uli Cartwright Page 9

If I am going to have my rights taken from me, shouldn’t the evidence saying that I can’t make decisions be stronger or bulletproof? Why was it expected that I had to get medical evidence saying I could make decisions?” 8

As Uli’s above evidence to the Disability Royal Commission aptly demonstrates, it is all too easy for a professional who does not know an individual well enough to make rash decisions with dire and long-term consequences. In fact, in this instance, there wasn’t even any further assessment undertaken of his financial decision-making ability, or how this was allegedly impacted by his recorded disability.

We feel this is the strongest argument against the Needs Assessment being conducted by anyone other than the medical and allied health professionals a participant trusts most and chooses for themselves.

How do these proposed changes bring us closer to Robodebt 2.0?

As Dr. O’Donovan stated before the Robodebt report was released:

“Robodebt used behavioural economics approaches to engineer feelings of shame
and prevent legal consciousness from forming. It gamed our administrative law
system to overwrite or rapture the debts of those who did complain, while nothing
changed on the frontline.

It imposed an administrative burden on those unable to carry it, confident they
would triage the trauma and cop the debt.”9

The NDIA and the Government must recognise the harms they can perpetrate on participants without ever raising a debt, through the sheer weight of the administrative burdens we are forced to carry, just to access the support we need.

As Mortimer J reminded the Agency in the Federal Court decision known as NDIA v Davis:

 “[Questions] of the construction and operation of the NDIS Act should be
 approached with a reasonable degree of common sense.

 The NDIS Act is beneficial and remedial legislation designed to operate in
 relatively high volume decision-making, in a pragmatic context, and in respect
 of people (and their families and carers) already facing great challenges in their
 daily lives.” 10

8 Disability Royal Commission, EXHIBIT 30-062 - STAT.0659.0001.0001 - Written statement of Uli Cartwright, https://disability.royalcommission.gov.au/publications/exhibit-30-062-stat065900010001- written-statement-uli-cartwright

9 Darren O’Donovan, The culmination of years of suffering: What can we expect from the Robodebt Royal Commision’s final report?, https://theconversation.com/the-culmination-of-years-of-suffering- what-can-we-expect-from-the-robodebt-royal-commissions-final-report-202337

10 National Disability Insurance Agency v Davis [2022] FCA 1002 (29 August 2022)

Cat Walker & Uli Cartwright Page 10

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.

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.

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.

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.

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

Cat Walker & Uli Cartwright Page 15

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.

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 no one 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

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 is withheld from people with lived experience entirely.

This means that if you do not work for a particular area or agency, you never know what the intended outcomes are. Priorities are always shifting and there is little trust because of the level of control over communication between agencies, the Government, and co-design participants. Every segment is far too risk averse in the one way we need them to take a leap of faith and facilitate open, frank, and fearless conversation, for reasons as basic as wanting to avoid being perceived as breaching impartiality requirements.

The result is that the outcomes we are seeing in the areas that matter most – including the Bill that was tabled in Parliament – skew heavily towards political and budget motivations because they lack the hefty dose of reality that lived experience would have offered.

We believe we need specific processes to bypass these constraints and unintended consequences imposed by the 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 do not have the constraints public servants do, which means we are inherently franker and more fearless than they are ever 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 is 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 the required trust for us to take promises that the Rules will be co-designed on faith alone.

This framework must be co-produced and drafted with lived experience experts, and it makes sense to utilise the IAC and PRG for this purpose to take advantage of existing infrastructure and confidentiality agreements which would enable this work to be completed in a timely manner. This requires no new infrastructure: It requires only the effort to connect the relevant parts of Government and the agencies involved, and genuine commitment to acknowledge and listen to the expertise they already have access to and are not utilising.

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

The Governments unconscious bias problem boils down to assuming we lack the capacity for the most important work. We point them to the brilliant Madison Tevlin’s viral video for World Down Syndrome Day and ask the Government to “assume that we can“:

                               Cat Walker & Uli Cartwright                     Page 18

Assumptions

1.

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.

2.

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.

3.

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.

4.

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.

5.

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.

6.

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.

7.

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.

8.

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:

Some of the Most Important Answers to “What Would We Do?”

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

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

  • 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.

  • 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.

  • 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.

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

  • 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.

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

  • 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.”

~ Professor John Massie, Life Is A Battlefield 12

[12] Life is a battlefield, https://www.sbs.com.au/ondemand/tv-program/life-is-a-battlefield/1973886019956

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 responded 13 to 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 is the timeframe for the review?

The Co-Design evaluation is expected to take 6 months.

b. Will they produce a publicly available report?

The Co-Design Advisory Group will receive the final evaluation report. A summary of the outcomes of the review will be published on the National Disability Insurance Scheme website.

c. Who was awarded the contract for the review?

The procurement process for an independent evaluation partner is now complete with the successful tenderer expected to be notified in mid to late March 2024. It is expected the work for the evaluation will commence by the end of March or early April 2024.

d. How much budget has been allocated for this review?

The National Disability Insurance Agency has allocated $200,000 for the contract.

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?

13 NDIA SQ24-000032, https://www.aph.gov.au/api/qon/downloadattachment?attachmentId=b7588f3f- bda3-4aad-91ab-d47ca147c949

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.“