Dear Chair, Committee, and Secretariat,

I am drafting this submission in my personal capacity with two hours to go, completely burnt out by joint snap efforts facilitated by Villamanta Disability Rights Legal Service to equip other participants to engage with this inquiry in such a short timeframe.

More than 80 showed up to the first, with roughly 36 hours notice. A similar number showed up to the second, a 1pm event we hurriedly arranged the night before.

I want to note the incredible response we had to these webinars, which platformed lived experience, and the efforts of Villamarta to support people you otherwise would not have heard from to make submissions.

People who are already burnt out, overwhelmed, working with limited capacity, and feeling traumatised and vilified by media discourse, and, disappointingly, some of the commentary by parliamentarians.

Many still have not managed because of all these factors, or the impacts of their disability.

I hope the Committee takes seriously that the efforts of community to engage even with such time constraints for the extended inquiry submissions reflect the desire we had for a longer and more meaningful conversation which would have better upheld Article 4(3) of the UNCRPD.

The fact that many of us, myself included, are scrambling to say something before COB today after waking to a disgraceful attack on the community and a parliamentarian with a disability – by the same person the Minister shook hands with in an effort to get his Bill through on his timeline – is the height of epistemic injustice and systemic ableism.

We are talking about a Bill many have told you will harm, and potentially, kill people.

In an inquiry relating directly to the disability community, this Committee has a responsibility to make it safe and accessible, with consideration for the difficulty so many have with understanding how it will impact them and making their voices heard; and to represent the ‘affairs’ of the community it will impact, especially when we are under attack by some of your colleagues.

I’m relieved we get to continue the conversation, but I wonder how many more would have spoken up, given more time for the community capacity-building required to cut through the propaganda we have seen, and more time for fully-formed thoughts, rather than just those we have had time to triage.

I have spent more time examining the details than many in my position, and I still have had the capacity to examine every aspect of concern, triaging these according to my lived experience expertise and ability to comment thoughtfully.

I am saying this as someone engaged and informed about these changes, and confident enough to speak up about them, who has spent many of my limited usable hours since The Bill was tabled advocating for changes to avoid the harms that are glaringly obvious to those of us who will actually be living them.

How do you think the rest of the community feels at this point?

Especially those who felt they had not been adequately informed until it was almost too gate? Or those who will have just missed tonight’s deadline?

This is what I have had time for, cobbled together from some of the lived experience commentary I shared with my peers.

Please do us the courtesy of platforming more lived experience voices at the hearings, and considering more than two additional hearings if you have received more suggestions than anticipated.

Please do us the courtesy of making recommendations which more closely reflect the evidence received this time, because I can see the proportion of lived experience suggestions coming through.

I know how hard it was for many of them to speak up, and they deserve to feel seen and held in a way that has not yet happened in the national conversation around this Bill.

Fact-checking the “whole person” amendment: Let’s talk about Annika

I find the Annika example in the explanatory memorandum, addressing co-occurring Autism and ADHD, both darkly hilarious, and terrifyingly revealing.

Darkly hilarious, because this is the example I personally highlighted to one of Minister Shorten’s senior advisers – and separately, in a meeting with a senior executive at the NDIA – as having potential Robodebt-like consequences, back in May, as we did in Submission 80 to the previous inquiry.

Terrifyingly revealing, because it demonstrates exactly that problem and tries to sell it as a purported ‘solution.’

After that meeting, I broke this down (as requested by the adviser) in a follow-up email to the Minister’s office.

In the follow-up email they requested, I said:

  “Put simply, this Bill makes it easier for the Agency to raise a debt based on impairments they choose not to recognise, than it does for participants to have review rights specifically for recognition of declined impairments. As I said in the meeting, the Robodebt scenario may not be this Government’s intention, but the Bill makes it all too easy for a different Government to do it.”

The Minister formally acknowledged this email, but he still has not fixed the problem. Last week’s amendment has not resolved it, and on the most cynical read, could potentially be twisted to contribute further to this risk.

The Annika example, in particular, betrays that the Agency will not assess cumulative functional impact when determining which impairments meet the disability requirements at Section 24(1)(c), and the summary on the DSS website then makes it clear that funding will still only be for impairments meeting the criteria, after refusing to assess that part of the criteria fairly.

This makes the insertion of the “disability support needs” wording very interesting: Are we now going to be arguing over disability support needs that are not NDIS supports, versus NDIS supports, as well as NDIS versus health needs?

When I read it all based on my experience of NDIA decision-making, I see this as another way for them to argue over technicalities in an effort to exclude support needs. Everything we have seen so far demonstrates the complete inability to let go of primary disability thinking and consider people and their needs holistically.

Like many, it increases my suspicions that budgets will be based on the same old opaque Typical Support Package algorithms, repackaged with a limited ability to tweak under the pretense of individualising based on the needs assessment.

The DSS summary of this amendment says:

  "The intent of section 32L has always been that a needs assessment will assess
  a person holistically, looking at all of their disability related support needs,
   consistent with recommendations of the 2023 Independent Review into the
   National Disability Insurance Scheme (NDIS Review).

  While the assessment itself is holistic, funding for supports under the NDIS can
   only be provided in relation to impairments that meet the disability or early
   intervention requirements.

   This approach is consistent with the original intention of the NDIS, to provide
    disability supports to Australians with permanent and significant disability as
   part of a broader system of available supports and is consistent with
  recommendations of the NDIS Review.

       It makes it clear the method for calculating a participant’s reasonable and
  necessary budget should recognise that a range of factors may impact a
   participant’s support needs."

They are not making any explicit legislated commitment to funding the needs arising from those complexities, and differentiating “disability support needs” from “NDIS supports” is not particularly reassuring.

The Annika example, in particular, makes me so concerned because it implies slightly bumping up the budget generated for Autism by the undefined ‘tool’ and ‘method’, due to the compounding impact of ADHD, but that ADHD itself has been deemed not to meet the disability requirements, based on some fictional unicorn assessor being able to determine – accurately! – that it is Autism causing the “substantial” impact on self-care and self-management, and that ADHD only has some impact in those domains which doesn’t mean the substantial threshold all over again on its own.

(To understand the futility of such an assessment, I refer you to the ‘Disability Soup’ analogy in Submission 86.1 to the Capability and Culture of the NDIA inquiry.)

What happens when some genius decides to retrospectively say, “Actually, we think that it was all ADHD all along, but you weren’t approved for that, Annika. Pay it back,” and Annika doesn’t have the capacity or support to fight it and retrospectively demonstrate that ADHD should have been considered as meeting Section 24(1)(c) when the collective impact was considered together with Autism?

After all, NDIS supports are being defined by impairment; not by disability, as Disability Discrimination Commissioner, Rosemary Kayess, so eloquently pointed out to this

Committee.

If this Committee won’t honour the expertise of Commissioner Kayess on this issue, it feels somewhat futile to keep trying, but I feel I must, because the gravity of this issue for those it will impact is not being taken seriously:

How many Annikas would die by suicide if they didn’t think they would win that fight?

Or if completely incompatible definitions of NDIS support are imposed on the Autism ‘class’?

Based on a completely unrealistic assessment that claims to know what percentage of each moment of struggle in an average day is Autism, and what percentage is ADHD, and what percentage is compound interest?

It’s all cognitive (in the real world, I disagree with that view, because there are likely also significant sensory impacts, for example), but they are explicitly refusing to assess the disability requirements based on the collective impact of one messy cognitive impairment that cannot be untangled for the sake of an algorithm, arising from BOTH neurodevelopmental diagnoses.

You only need to read the Robodebt Royal Commission report and recommendations to understand how very real the risk of outcomes as adverse as suicide is for all the real- life Annikas who could find themselves in this situation if we do not properly build procedural fairness into this Bill.

Our suicide risk is already extraordinarily high. The Government has a duty of care to consider that in the delivery of disability-related legislation and services.

As such, it is also a factor this Committee should consider when weighing the seriousness of the risks being highlighted to you, and the lack of safeguards against the cruellest and most cynical interpretation of the legislation before you.

This is not a Bill we can – or should be asked to – take on trust and ‘intent’, and it is not a Bill the Senate should pass on that basis. It must be considered based on what it actually says, and the power it has to do harm, especially without robust and targeted review rights.

Is this a Bill that will lead to a life worth living, or the life sentence of administrative trauma we talked about in Submission 80 to the previous inquiry?

I acknowledge Submission 16 from the Justice and Equity Centre, just published.

However, I am still inclined to take the more cynical view of the proposed amendment, because my bitter and traumatic lived experience engaging with the NDIA around this issue as both a participant and informal support (explored at length in submissions 86, 86.1 and 86.2 to the Capability and Culture of the NDIA inquiry, and cited in both reports) leads me to consider the Agency’s past behaviour as the most reliable predictor of how these changes will impact us in practice.

I have previously testified to those Senators also sitting on the Joint Standing Committee about being driven to suicidal ideation by the operational practices this Bill seeks to make lawful for participants with multiple permanent impairments.

Why should NDIS participants live in fear of Robodebt-like consequences for no better reason than the Government artificially dissecting our lived experience of disability into false pigeonholes, without even having targeted rights to review of a decision to exclude some impairments as not meeting the disability or early intervention requirements?

Fixing the NDIS means fixing procedural fairness problems so participants can live their lives and achieve the intended outcomes, rather than living in fear and under so many constraints good outcomes are impossible.

Recommendations and amendments requested

I expect the delayed joint supplementary submission (to Submission 80) that I made with Uli Cartwright and Kath Madgwick to the previous inquiry will be published by the time this submission is considered, presumably as Supplementary Submission 80.1 or similar.

I refer to the list of reviewable decisions we requested in that supplementary submission and urge the Committee to facilitate amendments which ensure all participants have these fair rights to review, along with the individualised definition of Section 10 (and its companion, Section 10A for assessing compliance) we proposed.

I believe the amendments we requested in that supplementary submission are still required, having considered the proposed ‘holistic’ amendment.

I wish I had time to make further commentary on that amendment, but this is what I could manage.

As discussed with the Secretariat, should there be further commentary to add relating to that joint submission once we have read the Agency’s reply next week, we will make a further brief submission as we did not receive the reply before the deadline for submissions to this new inquiry.

Lastly, I wish to make my views clear on whether the Bill should pass.

I do not believe the Bill should pass in its current or amended form.

I believe the consultation timeframe has still been too constrained for meaningful input from the community, and the lack of transparency over the drafting process and other changes in the pipeline does not inspire trust.

But I fear Parliament will not listen to the community, and will inflict this legislation on us anyway, rather than engage with community-led solutions.

The amendments proposed in our joint Supplementary Submission 80.1 to the previous inquiry are some of the safeguards I believe we need against the harms I am certain this Bill will cause if passed by the Senate.

If you will not reject the Bill in its entirety, I ask the Committee to at least ensure the Senate gives us these basic protections.