Lifelong neurological condition and access to NDIS supports (Participant experience) | External submission

Submission 980

Submission to the Senate Standing Committees on Community Aﬀairs re: NDIS Amendment Bill 2026 25 May 2026

Summary of concerns and requests

In summary, the concerns I have and my requests of you are outlined in the below table:

Issue Requests (I ask the Committee to:…)

1    This Bill requires that a participant          ●   Entirely remove Part 8 from Schedule 1.

demonstrate they have completed “all - OR

appropriate treatment” to remain eligible     ●  Remove clause (5)(b) from item 89

for the NDIS. It fails to deﬁne              ●  Amend the Bill so that treatment only counts as ‘appropriate’ if

‘appropriate’ in a manner that reﬂects it is genuinely accessible to that person given their location, both accessibility and aﬀordability and it ﬁnances and medical circumstances.

ignores the reality of conditions which       ●   Explicitly articulate in the legislation that autism is a

are lifelong and do not have curative permanent, lifelong neurological condition for which no treatments. (Schedule 1 Part 8) curative treatment exists.

2    This Bill will force women out of the         ●  Remove subsections 34(1G), 34(1H) and 34(1J) from the Bill

workforce and keep them there; it is a       ●  Commission modelling of the eﬀect on carer workforce

serious step backwards in Australia’s participation if the proposed funding reductions are gender equality eﬀorts (Subsection 34 + implemented

cumulative eﬀects)                     ●   Require a gender impact assessment of all proposed changes

before this Bill proceeds.

3    This Bill requires every funded support      ●   Restore the NDIA’s obligation to fund support for the whole

to arise directly from the speciﬁc person, not just an isolated diagnosis. impairment a person was assessed for, - AND

which does not reﬂect the reality of the      ●  Remove item 31 from Schedule 1, Part 3

complex interactivity that many disabled     ●  Remove 17B(2) from item 65 in Schedule 1, Part 6

people with co-occurring conditions - OR

experience (Schedule 1 Part 3 + 6)          ●  Remove the word “directly” from item 31 (Schedule 1, part 3)

and item 65 (Schedule 1, Part 6) and any other places it’s used to limit access to NDIS supports for the whole person

4    This Bill limits the need for               ●   Expressly state and limit which groups of support the

transparency, removes vital appeal ministerial support determination power in subsection 34A can rights and provides for changes by apply to

Ministerial instrument which, in the         ●   Explicitly stipulate that the subsection 34A determination

hands of less progressive future power be subject to a procedural fairness regime, including governments, will be used to further gut consultation with DPOs, a public-facing risk and impact the NDIS and cut vital lifelines to people assessment before the instrument is made, and disallowance in need (Section 34A + Schedule 3 Part pathways in Parliament

2)                                  ●   Explicitly include the following in Schedule 3 Part 2 (the

automated decision-making provisions): ○ individual review rights against any automated decision ○ a statutory requirement for traceability and free-text reasoning ○ independent audits of automated decision-making patterns ○ a sunset clause requiring re-authorisation of any automation rule.

Submission 980

Submission to the Senate Standing Committees on Community Aﬀairs re: NDIS Amendment Bill 2026 25 May 2026

Detailed submission

Dear Senators Cox, Steele-John, Ananda-Rajah, Antic, Askew and Brown

As a Queensland resident, a participant of the NIDS, a writer, a worker and a single mother to a disabled child, I implore you to please reject the Bill in its current form. I urge you to push for the signiﬁcant and material changes that would be required to ensure these amendments do not risk:

enshrining human rights abuses into Australian law
increasing suﬀering for disabled people
driving disabled people and their families further into poverty
the lives of disabled people in this country. Please ﬁnd below a detailed submission outlining my most pressing concerns with the NDIS Amendment Bill 2026 as it currently stands.

Your role as Senators is critical to the fabric of our democracy. This is one of those times we are relying on you to do your job with strength and courage. Please do not let this rushed and poorly-considered amendment through your quality gates.

Issue 1: This Bill requires that a participant demonstrate they have completed “all appropriate treatment” to remain eligible for the NDIS. It fails to deﬁne ‘appropriate’ in a manner that reﬂects both accessibility and aﬀordability and it ignores the reality of conditions which are lifelong and do not have curative treatments. (Schedule 1 Part 8)

The concern In its current form, The Bill allows treatment to be considered “appropriate” even if a person cannot aﬀord it or access it where they live. Furthermore, in item 89, clause (5)(b) would allow the NDIS to revoke the permanent status of a participant’s disability on the entirely subjective and arbitrary basis that certain treatments might improve the impacts of the impairment. Is it not the impacts of a person’s disability that the NDIS exists to support?

Indeed, it is often the very supports granted through the NDIS which do provide some relief from the impacts of a person’s disability. This Bill would mean people are expected to privately fund the supports and treatments which make life worth living, which are very often not aﬀordable or accessible. The circular logic built into this section of the Bill has the power to undermine the entire NDIS and grant planners the permission to entirely strip people’s necessary and vital supports away from them.

My story My disability is a lifelong neurological condition. There is no evidence-based treatment that will reverse, cure or materially remove it. Therapies such as exercise physiology, occupational therapy and psychology support me and people like me to build skills and manage daily life. They do not and cannot eliminate the underlying condition.

Before I was granted access to the NDIS, I was spending 24% of my annual salary on my health and disability. This included privately funding just two modalities of treatment (psychology and exercise physiology), neither at the frequency that I really require. With the increased cost of living and skyrocketing mortgage interest rates, I could not possibly sustain this, and access to the new treatments that the NDIS has aﬀorded me (e.g. occupational therapy) are simply out of the question. 2

Submission 980

Submission to the Senate Standing Committees on Community Aﬀairs re: NDIS Amendment Bill 2026 25 May 2026

Under this rule, I could be told I have not tried ‘appropriate treatment’. Not because I have refused it, but because it does not exist within reach.

According to the NDIA’s own consultation documents, analysis with Disability Support Consultants conﬁrms the agency has already pre-determined that most individuals with my disability will receive mid-range funding, regardless of individual need. That certainly reﬂects my own experience.

In my planning meeting just two months ago, my planner told me me “exercise physiology is never funded for your disability category” (my own clinical treatment team provided evidence otherwise) and that she would not be including any psychology in my plan either as I could access it via other ‘mainstream’ avenues (i.e. Medicare, which as you are aware only partially subsides psychology and only for short-term, clinical treatment of acute mental health conditions. My requirement is for long-term capacity building of speciﬁc disability-related impacts, which is the purpose of the NDIS and is beyond the scope of general community health services).

I had to point out that the NDIS Act stipulates that people with a disability and their families and carers should have certainty that people with disability will receive the care and support they need over their lifetime and that the NDIS is required by law to fund the full, necessary support. I had to remind the planner - and I remind you now - that leaving participants with a substantial gap payment when a Medicare plan can only partially subsidise a maximum of ﬁve and ten sessions a year respectively (for exercise physiology and psychology), is a direct contravention of the Act.

The planning meeting was deeply traumatic. I was pushed to the verge of meltdown when the planner accused my advocate and I of making her ‘feel bullied’ because I was ‘coming at her with all this legislation’. I was dumbfounded. The planner was unprepared for me being prepared - a tale as old as time; disabled people being underestimated - so she levelled this accusation at me. It was an outrageous example of DARVO in action by a government bureaucrat (DARVO = deny, attack, reverse victim and oﬀender; the common coercive control tactic wielded by abusers).

In that traumatic meeting, I had to ﬁght my guts out to get less than a quarter of what I require for each of those supports to maintain and build capacity. These amendments in the new Bill will see stories like mine increase exponentially, doing unspeakable damage to the lives of countless disabled people. It is inherently traumatic trying to navigate this world with a disability; the NDIS should be helping protect people from trauma, not inﬂicting it.

My request The ‘appropriate treatment’ rule adds a further barrier on top of a system that is already rationing support. I ask the Committee to:

Entirely remove Part 8 from Schedule 1.

OR -

Remove clause (5)(b) from item 89
amend the Bill so that treatment only counts as ‘appropriate’ if it is genuinely accessible to that person given their location, ﬁnances and medical circumstances.
explicitly articulate in the legislation that autism is a permanent, lifelong neurological condition for which no curative treatment exists.

Submission 980

Submission to the Senate Standing Committees on Community Aﬀairs re: NDIS Amendment Bill 2026 25 May 2026

Issue 2: This Bill will force women out of the workforce and keep them there; it is a serious step backwards in Australia’s gender equality eﬀorts (Subsection 34 + cumulative eﬀects)

The concern Through new provisions in subsections 34(1G) and 34(1H), this Bill would create a legal presumption that parents are responsible for providing supervision, personal care, transport, emotional support, behavioural support and other day-to-day assistance to their children with disability. Under subsection 34(1J), the NDIS would be directed to ignore the pressure this places on families when deciding whether to fund a support.

Families are already experiencing the consequences of this approach. During a Senate hearing on eligibility reassessments, CYDA CEO Skye Kakoschke-Moore shared this account from a family: “We were told that because my son was under 18 that everything was deemed parental responsibility. I was told that if I couldn’t fulﬁll my parental responsibility that I’d be reported to the department of Children’s Services.” These provisions do not reﬂect the reality of raising a child with complex disability needs. They reﬂect a policy decision to transfer costs from the NDIS onto families, and onto women in particular.

Beyond these speciﬁc provisions, the cumulative eﬀect of the proposed changes in this Bill on primary carers will be profound, especially on women. The NDIA’s own quarterly data (March 2025) shows that carer employment rose six (6) percentage points (from 46% to 52%) with access to the NDIS. This is not a coincidence. Formal support enables primary carers to participate in paid work. When support is cut, that participation is reversed. This is the direct, documented relationship between NDIS funding and workforce participation for carers.

Primary carers of disabled people are disproportionately women. In 2018, there were an estimated 860,000 primary carers of people with disability in Australia. The majority are women. These carers consistently report reduced or ceased paid work, reduced superannuation, physical and mental health decline and long-term ﬁnancial disadvantage they do not recover from.

The proposed changes in this Bill including pre-set funding tiers, the requirement to demonstrate ‘appropriate treatment,’ and the diversion of children under 9 oﬀ the NDIS, will each individually increase the care burden on families. Together, they will push more primary carers, predominantly women, out of the workforce entirely.

My story My disabled child does not yet have access to the NDIS – we are jumping through the hoops right now. As these changes loom, I am terriﬁed he may not end up getting access at all.

As the impacts of having an unsupported disability for him have grown, I have had to signiﬁcantly reduce my working hours. I was previously working four days per week, and am now working just two. I am not able to return to full-time work while I am providing the support the NDIS should be funding. If those supports never do kick in, I will never return to my previous work capacity.

As well as a reduced contribution to the Australian economy (which I genuinely do want to participate in), I have personally lost income, career progression and superannuation I will not get back.

My request 4

Submission 980

Submission to the Senate Standing Committees on Community Aﬀairs re: NDIS Amendment Bill 2026 25 May 2026

This is a gendered economic harm. It is a deeply disturbing inclusion and demonstrates a sexist and callous disregard for children, parents and families and a deeply misogynistic perception of the work of caregiving, which falls disproportionately on the shoulders of women. Women have been ﬁghting hard for generations to have this work acknowledged, valued and remunerated. We’re still a way oﬀ all of those things, and this Bill would be a signiﬁcant step backwards; pushing that invisible labour back into the shadows.

I ask the Committee to:

remove subsections 34(1G), 34(1H) and 34(1J) from the Bill
commission modelling of the eﬀect on carer workforce participation if the proposed funding reductions are implemented
require a gender impact assessment of all proposed changes before this Bill proceeds. Issue 3: This Bill requires every funded support to arise directly from the speciﬁc impairment a person was assessed for, which does not reﬂect the reality of the complex interactivity that many disabled people with co-occurring conditions experience (Schedule 1 Part 3)

The concern Very few disabilities exist in a vacuum. Many disabled people have comorbidities that exist in a complex web of interactions that cannot be neatly separated into distinct boxes. For example, research published in the Journal of Autism and Developmental Disorders (Guan et al., 2021) conﬁrms that the majority of autistic people have at least one co-occurring condition. These are not separate issues. They are part of the same person.

Indeed, all the ways in which we categorise humans and their health / mind ailments are simply made up.

You could categorise the books in a library by any number of systems. Why don’t we order them within their genres by book title instead of author surname? Why don’t we order them by how many words/pages they have so people can browse by size like we do with clothes? Why don’t we colour code them? We’d have very pretty libraries if we did it that way. The Dewey decimal system is just one possible way of categorising and ordering books in libraries. It’s the system we’ve all collectively fallen into step with, but it doesn’t make it necessarily the right one, or the only one.

People and our bodily experiences are just the same. Within the full spectrum of human experience, you could categorise our conditions in any number of ways. The ICD and DSM happen to be the ones we’ve fallen into step with, but as evidenced by the fact that they are both constantly evolving, we know these categories and what’s inside them are not ﬁxed.

Under this Bill, the NDIA could determine that life-changing supports a person needs in order to function and thrive in this world would not be funded as they do not arise speciﬁcally from the one diagnosis under which they managed to gain entry.

This is not a theoretical risk. Many autistic people, for example, are already being told their co-occurring conditions are not part of their NDIS-recognised impairment.

This knowledge is forcing people to edit their story, dishonoring their true experience because of the knowledge that it will not be seen as valid by a rigid system whose true goal seems to be minimising ﬁnancial outlay. 5

Submission 980

Submission to the Senate Standing Committees on Community Aﬀairs re: NDIS Amendment Bill 2026 25 May 2026

While people may have several interacting conditions which, taken together, are disabling for them, the level of red tape and diﬃculty involved in proving eligibility for the scheme means many people end up entering the scheme on the basis of only one of those conditions. Applicants live in fear that mentioning a diﬀerent condition which may not be considered a ‘disability’ will have planners arbitrarily deciding that certain support needs relate speciﬁcally to that condition and not to their ‘primary’ assessed disability.

For example, where do you draw the line with executive functioning challenges for someone who has AuDHD (Autism and ADHD together)? Currently, the ‘whole of person’ approach provides some level of protection from arbitrary line-dawing. Under this new Bill however, if an applicant was applying under their autism diagnosis, there would be nothing to stop a planner from saying, “oh, you don’t need core supports to keep your house clean; it’s only messy because of your ADHD, not your autism. We don’t support your ADHD, that’s not a disability.”

My story I am Autistic. I also have ADHD, anxiety, impaired mobility with chronic muscle tightness, delayed auditory processing and chronic fatigue. On top of this, I live with several autoimmune conditions that create frequent pain, fatigue and metabolic dysfunction. All of these conditions interact constantly and cannot be separated into neat categories. There are overlaps in functional capacity limitations between all of these conditions. Almost all of my symptoms and challenges could be put into multiple boxes. Yet I am only assessed and ‘approved’ for my Autism diagnosis.

The supports I have fought for (such as occupational therapy, exercise physiology, psychology and support work) address needs that cut across all of these conditions at once. Under this Bill, the NDIA could determine that this support does not ‘directly’ arise from my autism diagnosis and therefore should not be funded. My presentation would not change. My needs would not change. But my funding could be removed because a bureaucrat with a pen decides any number of those needs results primarily from one of those other conditions.

The same will be true for my child who is also autistic and has ADHD, a sensory processing disorder and anxiety. His co-occurring conditions cannot be separated from his autism. Under this new Bill, we risk not being able to access the supports he needs as certain elements of his presentation may be deemed as not ‘directly’ arising from his autism diagnosis.

My request When conditions co-occur in a disabled person, they are not separate issues, they are part of the same person. I ask the Committee to:

Restore the NDIA’s obligation to fund support for the whole person, not just an isolated diagnosis.

AND -

Remove item 31 from Schedule 1, Part 3
Remove 17B(2) from item 65 in Schedule 1, Part 6

OR -

Remove the word “directly” from item 31 (Schedule 1, part 3) and item 65 (Schedule 1, Part 6) and any other places it’s used to limit access to NDIS supports for the whole person.

Submission 980

Submission to the Senate Standing Committees on Community Aﬀairs re: NDIS Amendment Bill 2026 25 May 2026

Issue 4: This Bill limits the need for transparency, removes vital appeal rights and provides for changes by Ministerial instrument which, in the hands of less progressive future governments, will be used to further gut the NDIS and cut vital lifelines to people in need (Section 34A + Schedule 3 Part 2)

The concern In its current form, the Bill leaves the operational detail to NDIS rules and ministerial instruments that are still to be drafted. This is by design; it lets the government move faster, but it removes parliamentary scrutiny on the precise detail. This uncertainty and ambiguity is seriously concerning to the disabled community.

What we do know, is that Subsection 34A grants new powers for the Minister to cut funding without legislative oversight, without transparency and, importantly, without appeal.

This is a violation of our human rights and a gross overreach of power that, when delivered to future governments who may hold even more hostility towards disabled people, will undoubtedly lead directly to the deaths of disabled people. It is eugenics in action. If you let this Bill proceed with this clause intact, the blood will be on your hands.

Australia is a signatory to the Convention on the Rights of Persons with Disabilities (CRPD). The NDIS Act’s objects clause (s 3) refers speciﬁcally to implementing the CRPD. Several provisions of the proposed Bill are at tension with CRPD principles:

Any approach that reduces the funding base for community participation without compensating supports is a contravention of Article 12 (legal capacity) and Article 19 (living independently and in the community)
The express exclusion of ministerial support determinations from merits review (new subsection 34A) is a contravention of Article 13 (access to justice)
The rushing of this Bill through parliament and the powers granted to the Minister under it are contravention of Article 4(3) (involvement of persons with disabilities through their representative organisations in decisions aﬀecting them). While you have consultation ﬂagged for later this year, no results of that consultation can or will reverse these powers once this Bill is passed. There is also no guarantee that such consultation will be genuine and we will not know that until after the fact.

The Statement of Compatibility with Human Rights for the Bill argues each measure is “compatible” with the relevant human rights, with proportionate restrictions. Several legal commentators have already begun contesting these claims.

Furthermore, I have serious concerns about the ‘no appeal on an algorithm’ provision which we already see happening in aged care, with heartbreaking impacts.

Schedule 3 Part 2 of the Bill authorises the use of automated decision-making for four speciﬁed discretions: subsection 33, subsection 45, subsection 45A, and subsection 45C. The Explanatory Memorandum says these are aimed at ‘high-volume payment integrity and plan reconciliation’, not at budgeting and access, but it also acknowledges that new framework planning will rely on ‘computer assisted decision making’ (Schedule 3 Part 2).

Submission 980

Submission to the Senate Standing Committees on Community Aﬀairs re: NDIS Amendment Bill 2026 25 May 2026

As NDIS Legal Scholar, Dr Darren O’Donovan has pointed out:

“This Bill permits the use of machines for four discretions…There are a lot of holes in these provisions as a scheme for governing future automation. These general provisions could be used as an authorisation framework for using algorithms to take discretionary administrative action, restrained only by the provisional generic statements of [oversight].”

Recommendation 17.1 from the Robodebt Royal Commission was that there should be a consistent legal framework for automation in government services. That framework has not been built, and this Bill is being introduced into that gap.

The Bill does provide some mitigations including a requirement to be authorised by rule for any speciﬁc automated decision (other than s 33, 45, 45A, 45C which are pre-authorised); and obligations on the agency to “ensure” the system meets various policy goals. None of those obligations create individual review rights.

My story As an autistic person with ‘bottom up processing’, I need to understand the details of something in order to make sense of the whole.

When decisions are made by soulless computers who cannot truly understand my lived experience, when appeal rights are taken away, and when Ministerial directives can be made under the cover of darkness with no requirement to inform the public, navigating the NDIS will become an even more traumatic experience than it already is.

This lack of transparency, oversight and agency – and the knowledge that if a decision is made that doesn’t reﬂect my circumstances I’ll have no way to appeal it – will create very real psychological impacts for me and people like me.

My request It’s critical that you ensure this legislation is written in a way that protects disabled people from the whims of cruel and ableist governments in the future. You must also ensure it does not contravene our rights under International Human Rights law to be included in the design of the system (legislation) and of our own individual supports (planning and appeal).

I ask the Committee to:

expressly state and limit which groups of support the ministerial support determination power in subsection 34A can apply to
explicitly stipulate that the subsection 34A determination power be subject to a procedural fairness regime, including consultation with DPOs, a public-facing risk and impact assessment before the instrument is made, and disallowance pathways in Parliament
explicitly include in Schedule 3 Part 2 (the automated decision-making provisions): ○ individual review rights against any automated decision ○ a statutory requirement for traceability and free-text reasoning ○ independent audits of automated decision-making patterns ○ a sunset clause requiring re-authorisation of any automation rule.

Submission 980

Submission to the Senate Standing Committees on Community Aﬀairs re: NDIS Amendment Bill 2026 25 May 2026

A ﬁnal plea

I lived for 40 years not knowing I was disabled - such is the curse of invisible disability. In place of that knowledge and the community I was denied, I was instead handed all sorts of other (incorrect) explanations for my pain, discomfort and struggle. The closest explanation that ever ﬁt – the one that kept being delivered over and over again by experiences and people and systems – was that I was just ‘not built right’. Self-blame and self-hatred ﬂowed downstream from that belief.

My diagnosis and subsequent permission to identify as disabled is relatively fresh. I have only been on the NDIS since late March this year. Already, the supports I’ve been able to access have been life changing. The prospect of those being torn away or throttled at any time at a Minister’s whim is genuinely terrifying.

I feel like I’ve been climbing a cliﬀ-face for years and I’ve ﬁnally grasped the hand that’s been lowered down to pull me to safety. But just like that scene in The Lion King with Mufasa and Scar, that hand is about to be whipped away with a menacing laugh. Will I be left clinging to the cliﬀ face, hands all bloodied and bruised, my only hope to be rescued by a pack of hyenas? Or will I plummet into the stampede?

This story is yours to write, Senators. Please, do not be Scar. You are better than that.

Yours in hope