Submission 1597

Att: NDIS Amendments Senate Inquiry Members

I’m a NDIS participant since 2019 & a nominee for my NDIS-participant child since 2020. I self-manage the funding & administration for both plans. I’ll focus on my NDIS experiences in isolation.

I was forced to engage with NDIS when the scheme rolled out in my area. All the state funded community services I was engaged with at the time abandoned the sector, refusing to deliver services to anyone who didn’t have a NDIS package. In “selling” the scheme to me, the planner repeatedly & explicitly reassured me that I wouldn’t be worse off by switching from the state-based services to NDIS; that I’d have the choice to gengage with whichever service providers I preferred & that I’d have the control to change providers & direct the supports that best aligned with my personal goals & disability- elated needs. Within weeks of engaging with the scheme it became evident that the “no worse off” trope was completely false, by every measure; the only choice & control I had, with regards to service providers & the conditions of service delivery, was to take it or leave it. The one provider I was engaged with when the switch happened, abandoned all integrity as soon as the funding stream went from state-funded community services to federally-funded NDIS. I’ve been incrementally worse off ever since.

The package of proposed legislative amendments, taken in its entirety & at such a rushed pace, will cause broad harm to the NDIS community; to existing & prospective NDIS participants. The fortnight afforded for submissions is offensively inadequate. The disability community broadly opposes the proposed legislative changes. The disability community is exhausted by the relentless merry-go-round of turmoil & torment the Albanese government has subjected us to for the past 4 years, as it bludgeoned through some of the most consequential & catastrophic changes to social policy in modern history.

The proposed legislative changes enshrine into law the power for the minister du jour to change, tweak, abandon & ignore any concepts, rules, definitions or limits associated with the NDIS legislation, without oversight, warning or evidence; just the desire to claw back money in the interests of a balanced budget. Any system that can change overnight without scrutiny is unsafe. The proposals fail to define key concepts like “reasonable & necessary”, “severe & permanent disability”, “parental responsibility” & “everyday expense”, leaving gaping wounds in the legislation for NDIA to continue exploiting. The NDIS can’t rely on undefined criteria. To do so embeds a serious

Submission 1597

structural flaw into the legislation. NDIA has a longstanding history of unqualified staff exploiting & weaponising vague concepts in the legislation & applying internal operational procedures that are directly at odds with legislation; of making arbitrary decisions that contravene recommendations made by treating health professionals; & creating unfit-for-purpose NDIS plans resulting in participants having to endure the lengthy & often traumatising appeals process. Legislation that embeds a lack of clarification on key concepts, escalates both the risk of the agency’s incompetent decision-making as well as the catastrophic outcomes for participants & prospective participants.

Every aspect of the proposed legislative changes is of significant concern to me, both personally & for the disability community en masse. Nothing more so than the expectation that prospective participants will have to exhaust all available treatment options, regardless of any socioeconomic, geographical or other barriers a person may experience, establishes a reverse means testing instrument that will make access class-based. This is unreasonable & impossible for many to contemplate achieving. Eventually, only people with limitless access to money will be able to access NDIS; those without the means to exhaust all available treatment options, will be incrementally excluded. Accessing all available treatment options for any health or disability-related matter in Australia is highly exclusionary due to the exorbitant costs associated with private healthcare & the excessive waiting lists associated with public healthcare. Most Australians are at the mercy of a postcode lottery where it comes to any publicly provided or subsidised service. The government seeks to embed instruments of inequity into the NDIS legislation that will exacerbate the already chronic levels of multilayered inequality in Australia. Moreover, there’s a fundamental cognitive dissonance between the claim that participants are regarded from a whole-person perspective. The NDIA has traditionally weaponised concepts such as: “primary & secondary diagnoses” & “access disability” to deny funding for multiple, coexisting & fluctuating impairments. Unqualified NDIA staff don’t have the skills or training to discern which impairments correlate with which disability; they cherry-pick information, disregard & devalue lived experience & overrule the recommendations of treating health professionals & experts. All this incompetence at NDIA is exceedingly costly yet the government turns a blind-eye to it all.

The proposed amendments to the NDIS legislation give god-like powers to the minister, to decimate the scheme further, purely in the interests of budget-balancing, with explicit instructions to disregard the safety, wellbeing & human rights of participants. Based on my NDIS-related experiences & observations, NDIA has always sought to disregard the legislation, in its operational conduct. Amongst other things, this has

Submission 1597

resulted in an escalating AAT/ART case load, where tribunal members have consistently overturned NDIA misfeasance. Of the cases that don’t make it in front of a member, many are dragged through the process for months-years, by NDIA’s lawyers who demonstrate a flagrant disregard for the model litigant obligations they’re bound by, only to have them offer a settlement the day before the hearing. It’s astounding that yet again, our government has blinkers on when it comes to NDIA’s ongoing misconduct, misfeasance & malfeasance, including the conduct of the lawyers it employs. If there’s bloated spending, blow-outs & the NDIS is deemed “out-of-control”, the inefficiency is first & foremost, coming from within the agency.

NDIA is characterised by chronic systemic & cultural failure; the deliberate &/or incompetent creation & administration of inadequate & incorrect plans; & such longstanding & comprehensive failures with all legislated timeframes that the government now seeks to amend the timeframes rather than enforce the existing ones. Nevermind the timeframe failures impacting actual vulnerable human beings. NDIA can’t or won’t abide by the legislated timeframes, so the legislation must be changed to fall into line with NDIA’s misfeasance.

The government is seemingly indifferent to NDIA’s misfeasance & malfeasance & its negative impacts on the disability community. NDIS legislation was changed under Bill Shorten, aligning it more closely with NDIA’s general culture of legislative disregard. Still, this didn’t discourage NDIA from behaving badly. In fact, it emboldened it, making NDIA’s appetite for the destruction of disabled people, more ravenous. NDIA doesn’t wait for legislation to pass; it simply operates as it sees fit & waits for the legislation to catch up. As if this isn’t frustrating enough, the government’s response to the escalating caseload at AAT/ART is to effectively castrate the tribunal where it comes to NDIS matters. The only decision AAT/ART members will be able to suggest (indeed, suggest, not direct or enforce) to NDIA is that it runs the same assessment using the same information, a third time, to see if the results are different. This seems like the definition of stupidity & certainly not cost effective.

The unfit-for-purpose bastardisation of the i-CAN assessment is being designed to exclude, erase & fail as many cohorts as possible. NDIAs weaponised approach to assessments & planning consistently highlights how woefully unqualified, unskilled & inexperienced NDIA’s workforce is in making critical, often life or death decisions, about vulnerable people’s lives. A multilayered, multi-agency system of failure has been established, that literally sets people on a merry-go-round to nowhere. The only conclusion I can draw is that the government intends to discourage people from seeking

Submission 1597

the reasonable & necessary support they require to exist, or die trying. The appeals process will be a complete sham; costly, unfair & entirely devoid of due process.

The cuts to social & community participation will likely result in my death. My disabilities cause me to be severely isolated & unable to leave my house without support. Every minute of support I receive is utilised to its maximum potential, whatever that looks like on any given day. I don’t function like a machine; my state of existence isn’t predictable day-to-day. The proposed amendments create a situation whereby many disabled people will be at risk of reduced funding by virtue of the unpredictability of their impairments & ultimately at risk of severe & dangerous isolation. For many participants, the NDIS is their lifeline & often the only connection they have to other people. I fall into this cohort, existing in poverty, in a rural location with no friends, family or community connections.

If my social & community participation funding were to be slashed by 30-50%, rationed at 3-monthly intervals & not rolled over at the end of start of each ration period, I wouldn’t be able to plan & budget my funding effectively to accommodate for the nuances of life. I’m perpetually having to navigate support & therapy healthcare providers being unavailable at short notice, going on leave, getting sick, quitting & moving on. The premise of “rationed funding periods” operates from the assumption that a person’s unique life circumstances, needs & priorities, occur as neatly portioned events that never deviate from the schedule & aren’t impacted by the needs & priorities of external forces. Applied indiscriminately, it’s punitive, isolating, disempowering, unfair, unreasonable, unwarranted & unjustified.

Senior NDIS bureaucrats sat before the senate in 2023, assuring the committee that rationed funding periods, if legislated, would only ever be applied as a last resort, under specific circumstances & where a participant has demonstrated an inability to budget or presents as being at risk of non-compliance due to things like exploitation, prior bankruptcy or health issues. The reality of this is that NDIA commenced applying rationed funding periods indiscriminately, on every new plan generated, whether there were issues with the participant’s budgeting or not. Subsequently, reversing these decisions has been made very difficult & arbitrary. Reversing or correcting any of NDIA’s astoundingly high rate of “errors” is always difficult, arbitrary & drawn out as long as possible, at great expense to participants. NDIA is never held accountable for this & so it continues & worsens. I would challenge the senate committee or any politician to make progress in any area of need under such circumstances, rationing the crumbs that most NDIS participants are allocated.

Submission 1597

My social & community participation funding enables me to do in-person grocery & other shopping & to attend healthcare appointments. I previously used this funding to facilitate visiting my elderly, advanced-dementia suffering mother, but a NDIA worker told me visiting my mum was an everyday expense & that the support I required to do it was ineligible for funding. I was told that although my Core funding was completely flexible & sufficient to accommodate the legitimate costs associated with the support I required to visit Mum, it wasn’t considered a reasonable & necessary use of my funding. The fact that visiting my mum forms part of my goals, is deemed irrelevant. The fact that I wouldn’t need support if I wasn’t disabled, also irrelevant, because it doesn’t relate to the disability &/or impairments that NDIA has decided are my “primary disabilities”. With this in mind, I know I’ll never see Mum alive again, or likely be able to attend her funeral.

The proposed amendments do nothing to address the rampant misconduct running through the NDIS service provision network, both registered & unregistered. The most egregious sharp-practices I’ve personally experienced have all been at the hands of registered providers. None of my existing providers are registered because providers being registered is a red flag for me. I’ve been subjected to every kind of sharp-practice that any provider could dream of. Because I’m self-managed I’m able to catch & stop any issues as soon as they become evident. The safeguards in place for reporting NDIS fraud & misconduct have been completely useless in every situation I’ve faced. The end result is a shrinking pool of service providers available to me because I won’t accept misconduct or fraud. The systems in place to administrate NDIS invoicing & compliance are so unfit-for-purpose; so confusing, clandestine & convoluted that unless a participant is self-managed, they can’t see what is going on with invoicing. This facilitates immeasurable non-compliant spending, & although participants are the farthest removed from this behaviour, they’re the ones who endure the consequences of it. The proposed amendments to the NDIS legislation do nothing to address any of this; they do nothing to address price gouging, over-servicing, coercive practices, quality control, service delivery deserts, rural & regional inaccessibility or providers being able to charge separately for various forms of travel & transport costs that the agency summarily refuses to allocate dedicated funding for.

The commodification of disability service delivery has effectively thrown Australia’s disability community to the wolves of the market, with no support, advice, advocacy or demonstrable rights. NDIS continues to languish under the indifference of this government, with disabled people being blamed & punished for its dysfunction, whilst

Submission 1597

corporate providers devour all the independent providers & grow bigger, stronger but rarely better. My experiences at the mercy of NDIS providers & the absence of support from NDIA, NDIS Quality & Safeguards & the Fraud Fusion Taskforce, have resulted in the metastasisation of my impairments across every aspect of my being. The safeguards in place are unfit-for-purpose; they haven’t mitigated misconduct amongst the existing registered provider cohort so mandating registration across the sector will likely see this arrangement continue, at great cost to the scheme & far greater cost to the disability community. The government’s approach is to punish disabled people rather than addressing provider misconduct & the toxicity of the market generally.

The proposed legislative changes erode people’s Human Rights & Disability Discrimination Act Protections, presenting an undeniable pivot away from the UNCRPD, specifically:

• Article 5 - equality & non-discrimination
• Article 7 - rights of children with disabilities
• Article 12 - equal recognition before the law
• Article 13 - equal access to justice
• Article 17 - respect for physical & mental integrity
• Article 19 - independence & inclusion
• Article 20 - personal mobility
• Article 23 - respect for home & family
• Article 24 - education
• Article 25 - health
• Article 26 - habilitation & rehabilitation
• Article 28 - adequate standard of living

In practice, NDIA has been pivoting away from upholding the commitments outlined in the UNCRPD at least as long as I’ve been dealing with NDIS. As with previous legislative changes to the NDIS Act, the government seeks to align the law with NDIA’s conduct, rather than force NDIA to operate within the law.

Submission 1597

The proposed amendments to the NDIS Act also risk breaching the Disability Discrimination Act 1992, specifically:

• Section 5 - reasonable adjustments, comparative & less favourable treatment
• Section 4 - direct discrimination
• Section 6 - indirect discrimination
• Section 11 - unjustifiable hardship
• Section 24 - provision of goods & services

Having been involved with the legislative changes since their inception around mid- 2022, with the “Getting the NDIS Back on Track” Act 2024, I’m deeply cynical about the senate committee process. I watched & participated in hours & hours of senate committee hearings, consultations, inquiries & roundtables. When the legislation was passed in 2024 it was abundantly clear that the government’s commitment to “consultation & co-design” was entirely disingenuous. Feedback provided by disabled people throughout the consultation process was summarily dismissed & the “evidence” used to justify the changes that were ultimately passed into law, was flimsy, lacking credibility & cherry-picked. Upon reflection it seems that decisions had already been made, cheques signed & ink dried, on deals that would decimate the premise of “choice & control”; stripping the scheme of due process, fairness & dignity; & that the consultation period that lead to the passing legislation, was largely performative. The current proposals to change the NDIS legislation - the “Integrity & Safeguarding Act” Amendment 2026 & the “Securing the NDIS for Future Generations” Amendments Bill 2026, continue with the tradition of denying disabled people access to due process, fairness & dignity.

Feedback from the disability community should be considered the most important information taken into account when considering NDIS legislation, yet we’re subjected to villainisation, gaslighting & a weaponised agency that shows a flagrant disregard for the legislation & the people at the mercy of it. I’m confident that the consultation process is again performative; that the disability community is being humoured with a 14-day window to collectivise our outrage, yet I fear decisions are already made, deals done, ink dried. This idea has made me wonder whether I should contribute a submission at all. I’ve concluded that despite the cynical process, the indifference & indignity of all of this, if my submission is nothing more than a demonstration of

Submission 1597

solidarity with my community, then it’s worth risking physiological collapse in order to contribute.

The changes proposed will result in immeasurable harm & preventable deaths. For me, The frustration, exhaustion & almost constant state of heightened anxiety about the ongoing weaponisation of NDIS, is physically, psychologically & spiritually unsustainable. Knowing that the rules can change at any time, leaving me unsupported at the drop-of-a-hat, has created a cycle of unresolvable anxiety for me. Any of the goals I dreamt of achieving; any of the opportunities I could have grabbed for; any hope I had of becoming a functioning, participating & independent member of my community, have long since evaporated. It’s a genuine challenge to remain hopeful enough to continue getting out of bed each day. I increasingly wish not to wake up. The silent solidarity of knowing so many others are in a similar position & headspace as me, is often what keeps me going.

Each relevant review leading to the establishment of the NDIS, the Productivity Commission’s 2011 Inquiry, the NDIS Review 2019, & the Disability Royal Commission, happened because the existing systems providing support services to the disability community, were fractured & failing disabled people across Australia. The consistent themes brought to light in each of the reviews were that people with disabilities were living in crisis; the families of disabled people were overwhelmed to collapse by unpaid care; both market & public service delivery was inconsistent & unaffordable to the most in need of it; & people’s basic human rights were frequently disregarded. The NDIS was intended as a direct response to these findings. It was supposed to be a rights-based, insurance-driven system designed to facilitate funding for individualised support packages, early years intervention, with a focus on choice & control, building capacity & independence, promoting & upholding disabled people’s dignity & their right to be free from discrimination. This is a far cry from the realities of the NDIS today.

Any new or amended legislation must honour & uphold the core findings of those foundational reviews & inquiries. They must not erode the principles that justified the creation of the NDIS in the first place. The NDIS Bill must focus on the real issues identified repeatedly across all reviews: fraud, price gouging, market failure, and provider exploitation. These are the areas where reform is urgently needed - not in restricting participant rights, limiting plan reviews, or narrowing eligibility. To weaponise, sideline & revoke the basic rights disabled people have fought long & hard for, the rights that Australia has pledged its commitment to upholding, protecting & promoting,

Submission 1597

send the overt message that disabled people don’t matter. Existing under the weight of my government’s contempt, is beyond challenging.

I implore the senate committee to amend the proposed suite of amendments to ensure it protects participants, supports carers, upholds human rights & remains true to the original intent of the scheme: that people with disabilities could be participating members of their communities & broader society, however that looks, with equal standing in employment, education, housing, & social participation. Passage of the proposed amendments disregards the founding principles of the NDIS; it will further weaponise an already deeply problematic scheme. Passage of the proposed amendments will see a continuation of the failure to address the legitimate sources of dysfunction that plague NDIS: NDIA’s operational misconduct & its disregard for due process, & the toxic culture of sharp-practices that providers (registered & unregistered) are able to perpetrate without consequence. Expecting disabled Australians to absorb the impact of this reform is unhinged & unconscionable.

Thank you for considering my submission.