Submission 2048

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission from a sole parent carer of a child with complex disability May 2026

This submission is made by the sole parent and full-time carer of a 14-year-old daughter with autism, ADHD, anxiety, complex PTSD, and postural orthostatic tachycardia syndrome (POTS). It identifies eight provisions in Schedule 1 of the Bill that carry serious risk for families with complex, fluctuating, and invisible disability and offers concrete legislative recommendations for each. The submission draws on direct lived experience, including hospital refeeding admission during severe autistic burnout, to illustrate the human cost when disability support is misunderstood, underfunded, or wrongly denied.

Part 1: Lived Experience

I am asking policymakers to understand something that is difficult to see from the outside: my daughter’s disability is real, serious, and life-limiting - even when she appears to be coping.

What the outside world sees

From a distance, my daughter can appear articulate, intelligent, and capable. She can sometimes smile, hold a conversation, complete schoolwork, bake cookies, or walk into a shop and purchase something. These moments are real, but very infrequent. They are not the whole picture.

Behind each of those moments is a cost that is invisible to most observers: severe shutdown, inability to speak, inability to eat or drink, worsening medical symptoms, and complete physiological and emotional collapse, sometimes lasting days.

What I do, every day

My daughter has a complex array of neurodevelopmental, medical, and mental health conditions, but her disability is at the core of everything I manage. She does not reliably experience thirst or recognise her body’s signals. She cannot independently regulate her eating or drinking in many circumstances. When distressed, she can stop eating almost entirely, consuming as little as 400–800 calories per day. Her form of emotional regulation involves skin-picking, friction burns, and cutting, and I have to support her by staying steady no matter what.

I monitor her continuously for:

• hydration and nutrition - she will not drink unless prompted
• POTS symptoms, which can cause her to faint or lose sensation in her extremities, particularly severe in summer
• self-harm and suicide risk
• emotional regulation and nervous system state
• medication compliance
• sensory overload and shutdown
• medical deterioration caused by dysregulation or inadequate intake

Submission 2048

Submission 2048

She attends school part-time, in a very small and supportive environment. Even there, the effort of masking and coping means she frequently returns home unable to speak, unable to eat, and emotionally collapsed for the rest of the day. People see a child who sometimes attends school and is friendly and well-behaved. They do not see the physiological crash that follows.

The impact on our family My younger child has been profoundly affected by years of living alongside high and unpredictable care needs. My two children no longer speak to each other. As a sole parent, I cannot adequately meet both children’s needs because my older daughter’s safety requires continuous prioritisation.

I have had extended periods away from work, including approximately 14 months nursing my daughter through severe autistic burnout and recovery following refeeding treatment, and 2–3 week blocks when she has had other hospital admissions or severe periods of shutdown. My employment and income have been significantly affected. I have the capability to contribute to society as an experienced public servant, but despite an extremely lenient workplace, I am limited in what I can contribute and I cannot work reliably.

I am no longer coping emotionally. I experience profound social isolation. I have no co- parent, no shared caregiving, and no meaningful opportunity for rest or recovery or to rebuild relationships. When I am distressed, I rely on helplines because there is no one to call.

My greatest fear

I am struggling physically and psychologically and am scared I could require

hospitalisation myself. If that happens, and without anyone who can care for her, my daughter could enter state care, despite the fact that even specialised clinical facilities have struggled to keep her medically stable. What happens to children like her when their sole carer collapses? Do they simply cycle through emergency departments, refeeding admissions and institutional care while accumulating more trauma?

Part 2: What the NDIS has made possible and what this Bill puts at risk My daughter has funding for therapeutic supports, support workers, and community access. This funding has enabled her to access community programs, experience co-regulation during activities such as catching public transport, visiting shops, or attending an art class, receive support for basic personal care, and participate in the community with someone other than me.

Without this support, she would isolate completely at home. She requires relational support to participate in community activities and as she grows through adolescence towards adulthood, doing those activities with her mum does not support her independence. The support worker relationship is different. It is peer-like and allows her to experience life similar to a normal teenager her age.

She has had six support workers. Only one has been able to develop the trust and rapport that allows her to eat, drink, and engage in activities in the community. That relationship took three months to build. It is irreplaceable.

This is the support that this Bill puts most directly at risk. The provisions in Schedule 1 that codify parental responsibility, prioritise cheaper alternatives, and restrict access to

Submission 2048

individualised supports are aimed precisely at the kind of funding that has made a real difference for us.

When I ask what this Bill will cost, I am not asking what it will save from the NDIS budget. I am asking what it will cost our family, our health system and our community when that support disappears.

Part 3: Summary of Provisions and Recommendations

The following table maps eight provisions in Schedule 1 of the Bill to their real-world impact for families like mine, and the specific amendments needed to protect those families.

                                                               4

Submission 2048

Issue | Bill Reference | Real-World Impact | Recommendation

| — | — | — | — | Ministerial power | Schedule 1, Part 4 | The Minister can reduce any support category funding determinations must be across all plans subject to parliamentary disallowance, time limits, and individual impact assessment before application. | Ministerial determination power decree simultaneously with no parliamentary vote, and no expiry date. Community participation spending, the support most valued by our family, is specifically flagged.

Evidence hierarchy | New evidence hierarchy | Peer-reviewed research is prioritised over clinical disadvantages complex autism regulation-based supports for PDA and complex autism are under-researched and at risk of refusal. | Explicitly recognise lived experience evidence, family evidence. Highly clinician observation, and longitudinal participant-specific outcomes alongside published research.

Unscheduled reassessment | Tightens unscheduled reassessment criteria | Gradual deterioration (worsening burnout, declining school attendance, increasing isolation) may not meet significant and thresholds. | Accessible reassessment pathways must exist where caregiving load increases or informal care becomes unsustainable, not only at crisis thresholds. Trapping families in inadequate functional capacity change.

Treatment-first requirement for permanence | Amends permanence criteria | Requires all appropriate treatments to have been tried before impairment is considered permanent. Financial barriers and geographic distance are explicitly excluded as valid reasons for not accessing treatment. | Neurodevelopmental disability remains permanent. Access recognised as relevant to the permanence determination.

Submission 2048

Part 4: Provision-by-Provision Analysis and Recommendations

Issue 1: Financial sustainability as a legal test for support

Schedule 1, Part 6 — amends section 3(1)(d) of the NDIS Act For the first time in the history of the scheme, the Bill embeds financial sustainability as a legal condition on whether support is funded. The amended section 3(1)(d) will state that the NDIS provides supports only ’so far as is consistent with the financial sustainability of the scheme.’ This changes the operative question from: “Does this person need support?” To “Does this person need support enough to justify the cost within a financially constrained scheme?”

This distinction matters enormously for families like mine. We often need support to prevent collapse. Systems typically fund only once collapse becomes undeniable, by which point intervention is far more expensive, takes longer and is less effective.

Preventative support, relational support and carer stabilisation are the supports most likely to be deprioritised under cost-containment logic. They are also the supports most likely to keep people out of hospital, out of child protection and out of crisis.

Recommendation:

• The legislation should explicitly state that preventative supports are legitimate, cost- effective NDIS outcomes.
• Maintaining family stability and preventing carer collapse should be recognised as valid NDIS outcomes - not merely parental preferences.
• Financial sustainability must not override participant safety or the sustainability of informal care arrangements.

Issue 2: Supports must arise ‘directly’ from impairment

Schedule 1, Part 3 — amends section 34 and section 17B(2)(a) The Bill inserts the word ‘directly’ into the requirement that funded supports arise from a participant’s impairment. One word. No definition. No guidance from the government on what it will mean in practice.

For my daughter, this creates a dangerous fragmentation trap. Her autism, POTS, eating difficulties, emotional dysregulation, burnout, and shutdown do not occur in separate, neatly attributable categories. They interact continuously. The autism causes the dysregulation. The dysregulation worsens the nutrition and hydration. The dehydration worsens the POTS. The POTS and nutritional decline worsen the burnout. The burnout prevents school attendance. The lack of school attendance worsens mental health, which combined with autism increases avoidance. The lack of interoceptive awareness prevents her from understanding how to support herself.

These are not parallel problems with separate funding streams. They are a single, interconnected set of conditions that comprise her disability. Under a strict reading of clearly,’ a planner or automated system could argue that anxiety does not arise directly from autism - it arises from the isolation that arises from the communication difficulties that arise from the autism. That is two or three steps removed from ‘clearly.’

The risk is a structural game of responsibility-shifting: education says school participation is a health issue; doctors say emotional regulation is a psychology issue; disability systems say supervision is parental responsibility. The family is trapped between systems while the child deteriorates.

Submission 2048

Recommendation:

• The legislation should explicitly recognise that supports arising from interactions between co-occurring impairments remain NDIS-fundable.
• Compounding disability, where one condition worsens another, must not be used to fragment responsibility across systems.
• The government must publish guidance before this provision takes effect on what ‘directly’ means for complex, multi-diagnosis presentations.

Issue 3: Functional capacity assessed without supports or environment

Schedule 1, Part 1 — new definition of functional capacity

The Bill introduces a new statutory definition of functional capacity that requires assessment without assistive technology, without home modifications, without help from other people, and excluding personal and environmental circumstances.

In principle, assessing baseline disability without existing supports provides a truer picture of underlying need. In practice, this provision sits alongside every other provision in this Bill — and the government has not explained how the rest of the Bill will fund what an accurate assessment reveals.

The deepest contradiction is this: the functional capacity assessment in Part 1 excludes the impact of other people. But the parental responsibility provisions in Part 6 use the presence of those same people to justify not funding what the assessment reveals.

The participant is assessed as if alone. Then funded as if supported. They get the worst of both positions.

For my daughter, a snapshot assessment might record that she can technically speak, technically eat, and technically perform tasks. It would not capture:

• that she cannot sustain these functions without continuous scaffolding
• that the post-activity collapse can last hours or days
• the masking cost that produces delayed and severe burnout
• the inability to eat or drink independently without prompting in all contexts, and frequently not at all away from me
• the seasonal deterioration when POTS and dehydration become severely debilitating in summer
• the inability to generalise any skill across different settings and relationships.

Recommendation:

• Functional assessments must explicitly consider sustainability over time, not isolated performance.
• Post-activity deterioration, recovery burden, environmental dependence, and seasonal variation must be assessed as part of functional capacity.
• The government must resolve the internal contradiction between Part 1 and Part 6 — a participant cannot simultaneously be assessed as if unsupported and funded as if supported.

Issue 4: Parental responsibility codified in law

Schedule 1, Part 6 — new parental responsibility provisions

The Bill codifies parental responsibility as a factor the CEO must consider before approving funded supports. Parents are legally presumed responsible for supervision, personal care, transport, emotional support, behavioural support and assistance with activities of daily

Submission 2048

living. The CEO must not approve a support if its primary purpose is to reduce parental burden below what is reasonably expected.

I understand the intent. But the effect, applied to families like mine, would be to legally normalise extraordinary caregiving labour as ordinary parenting.

What I provide is not ordinary parenting. I cannot name another parent of a 14-year-old who must continuously prompt their child to drink water because the child cannot recognise thirst. I do not know other parents whose child cannot independently eat safely, recognise heat or cold, or attend school without physiological collapse afterwards.

The care I provide - continuous co-regulation, medical monitoring, safety supervision, and crisis prevention - is disability support work. Classifying it as parental responsibility does not make it ordinary. It makes it invisible.

The NDIS was not created because families were not doing enough. It was created because they were doing too much - because parents were leaving the workforce, destroying their health, and burning out completely trying to fill gaps the state refused to fund. The Productivity Commission’s own modelling showed that investing in formal supports reduces the catastrophic cost of informal carer breakdown. This provision risks legislatively reversing that founding rationale.

Recommendation:

• The legislation should define the threshold between ordinary parenting and disability-level care with reference to medical complexity, intensity, and sustainability.
• Carer burnout and unsustainability must be recognised as participant risk factors, not merely personal circumstances.
• The preservation of carer capacity must be explicitly recognised as essential to participant wellbeing and long-term system sustainability.

Issue 5: Ministerial power to cut funding categories by decree

Schedule 1, Part 4 — ministerial determination power The Bill gives the Minister power to reduce the funding for an entire category of supports by a set percentage, applied across every NDIS plan simultaneously, by legislative instrument. No individual assessment. No consideration of specific participant needs. No parliamentary vote. No expiry date.

The Bill explicitly states this power is valid even if the result is that a participant’s plan no longer covers the full cost of their reasonable and necessary supports.

The Minister has specifically flagged community participation spending as the category driving unsustainable growth. This is precisely the category of support that has made the greatest difference for our family - the funding that allows my daughter to access the community with her support worker, the one person outside our household she trusts.

The individual planning principles at the heart of the NDIS Act are built on the premise that support is determined by what a specific person needs, not by what a budget line can afford. A ministerial determination that cuts community participation by 50% across all participants does not make an individual assessment. It makes a financial decision dressed as a planning decision.

Recommendation:

• Ministerial funding determinations must be subject to parliamentary disallowance.

Submission 2048

• Any determination that reduces support categories must be subject to time limits and mandatory review.
• Where a determination would reduce a participant’s plan below the level previously assessed as reasonable and necessary, an individual review must be available.

Issue 6: Evidence hierarchy disadvantages complex autism

Schedule 1, Part 6 — new evidence hierarchy for support decisions

The Bill introduces a hierarchy of evidence for support decisions, placing peer-reviewed published research first, individual clinical evidence second, and prior plan outcomes third. Supports can be refused where the evidence base is limited.

Many supports that are genuinely effective for autistic children — particularly those with complex, PDA, or demand-avoidant profiles — are under-researched, highly individualised, and reliant on co-regulation rather than clinical intervention. PDA profiles are poorly represented in mainstream research literature.

The support worker relationship that took three months to build and now allows my daughter to eat, drink, and leave the house is not supported by a randomised controlled trial. It is supported by the evidence of her life: her food intake logs, her school attendance records, her hospital admissions, and the clinical observations of her treating team. That evidence is real. It should count.

Recommendation:

• Lived experience evidence, clinician observation, and longitudinal participant-specific outcomes must be explicitly recognised alongside published research.
• The absence of peer-reviewed evidence for a support should not be sufficient grounds for refusal where participant-specific evidence demonstrates benefit.

Issue 7: Unscheduled reassessment now requires proof of substantial decline

Schedule 1, Part 2 — tightens unscheduled reassessment criteria

The Bill tightens the threshold for requesting an unscheduled plan reassessment. Only a ‘significant and ongoing change in functional capacity that substantially reduces the ability to perform daily activities’ will now qualify. The government’s stated rationale is that one in five plans are currently reassessed annually, with an average 20% increase in value. It describes this as unsustainable growth. But this framing misidentifies the cause: these reassessments are NDIA employees correcting other NDIA employees’ work. Plans are being found to be wrong. Participants are using the only mechanism available to correct them.

Making it harder to correct a wrong plan does not reduce the cost of wrong plans. It redirects it from an internal administrative process to an external legal one, or to the health system, the mental health system, and child protection.

For families experiencing gradual deterioration - worsening burnout, declining school attendance, increasing social isolation, incrementally worsening eating and drinking difficulties - none of these changes may individually meet the ‘substantial reduction’ threshold. But together they represent a family moving toward collapse.

Recommendation:

• Accessible reassessment pathways must exist where caregiving burden increases or informal care arrangements become unsustainable — not only when the participant demonstrates substantial functional decline.
• The 90-day response period for reassessment requests is too long for families in escalating crisis; a 30-day maximum should apply in cases of carer risk.

Submission 2048

Issue 8: Treatment-first requirement for permanence, regardless of access

Schedule 1, Part 8 — amends permanence criteria

The Bill tightens the permanence threshold by requiring that all appropriate treatments available in Australia have been tried before an impairment is considered permanent. The Bill explicitly states that individual financial circumstances and geographical location do not make a treatment inappropriate.

In plain English: if a treatment exists in Australia, it is appropriate. The fact that you cannot afford it, that the nearest clinic is six hours away, or that the public waitlist is two years long does not matter.

For autistic children, this creates particular risk. Autism is lifelong. It is not cured by treatment. But autistic children often improve somewhat with the right support, may partially recover from burnout, and may gain skills slowly over time. The danger is that partial improvement - often achieved precisely because NDIS-funded supports are in place - becomes evidence that those supports are no longer required.

Improvement does not mean the disability has been treated away. Improvement often happens because support exists. Removing support to test whether the improvement was real is not a cost-saving measure. It is a risk to the child’s safety.

Recommendation:

• The legislation should explicitly clarify that fluctuating or partially improving neurodevelopmental disability remains permanent.
• Capacity gains achieved through NDIS-funded support must not be used as evidence that support is no longer required.
• Financial barriers and geographic inaccessibility must be recognised as relevant to whether a treatment is ‘appropriate’ for the individual.

Conclusion

I am not asking for luxury or unlimited funding. I am asking policymakers to understand what happens when families carrying profound invisible disability are left without enough support until they collapse.

The current NDIS system already relies heavily on exhausted parents absorbing unsustainable levels of care. If these reforms further narrow access to support for complex, fluctuating, autistic disability, the result will not be reduced need. It will simply shift costs elsewhere:

• hospitals and emergency departments
• mental health crisis services
• child protection and out-of-home care
• lost workforce participation from parents who can no longer work
• family breakdown
• accumulated trauma that shapes a child’s entire life trajectory

The NDIS should not only ask what supports cost.

It should ask what happens when they are absent.

Submission 2048

I urge the Committee to amend the Bill so that disability-related supports are not excluded simply because they resemble activities that could be undertaken by parents and to ensure that decisions reflect the intensity, complexity and sustainability of support needs experienced by children with multiple interacting disabilities.

My daughter is a wonderful, intelligent, and deeply loved child. But love alone is not enough to sustain a family under this level of chronic strain and isolation. Australia cannot continue replacing genuine community and care with exhausted parents operating alone until they collapse.

I once said to a friend: even though they say it takes a village to raise a child, we don’t have one. The NDIS is my village. It is all we have. Please do not make changes that will take that village away.

redacted

Submission lodged May 2026.