Submission 3311 — Name Withheld — NDIS Future Generations Bill

Submission to the Senate Community

Affairs Legislation Committee

Inquiry into the National Disability Insurance Scheme Amendment

(Securing the NDIS for Future Generations) Bill 2026

Submitted by:                 - parent and primary carer of              , NDIS participant

Date: 1 June 2026 Publication: I consent to this submission being published with my name.

Executive summary

I oppose the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 unless it is substantially amended, and I am deeply concerned about the disability savings built into the recent Budget. I am not against reform. I am against reform that makes life harder, riskier and more degrading for disabled people and the families already holding everything together. For people with complex, high-intensity support needs like my son , the proposed changes — especially category-wide funding reductions through support determinations, ministerial caps and pricing powers, narrowing of the reasonable-and-necessary test, curtailed reassessment rights, expanded plan suspension and revocation powers, and the removal or severe limitation of merits review — will cause immediate and foreseeable harm. The Bill treats daily living supports as if they are optional categories that can be cut back, rather than the continuous scaffolding that keeps people safe, well and included in ordinary life, and it weakens the safeguards that protect participants from catastrophic underfunding. This submission explains why those changes matter for , sets out targeted drafting fixes, and asks the Committee to recommend them.

Personal context

I am ’s parent and primary carer. He is 18 and an NDIS participant with profound and permanent disability.

has complex physical, medical and communication disabilities. He lives with severe cerebral palsy and everything that comes with it. He is PEG fed, doubly incontinent, non-speaking, at risk of seizures, and needs full support with mobility, personal care, communication, safety and every part of daily life. He cannot do the things most people never have to think about without skilled help. That is the real life this Bill is being written over.

Our family is already beyond breaking point. ’s care is skilled, physical, relentless and constant. He needs help with transfers, positioning, PEG feeding, medication, dressing, continence care, communication, seizure monitoring, transport and every part of the day. He

cannot be left safely without trained support. Every day is built around keeping him safe, well and included in the world. So when governments talk about tightening plans, narrowing flexibility and delivering savings, what I hear is that families like mine are expected to absorb even more until something finally gives.

What makes this worse is the belief that tighter rules, standardised processes and automated decisions will somehow manage complex disability better. Families like ours are already spending enormous amounts of time feeding the system with reports, reassessments, forms, phone calls, evidence requests and follow-up, while still doing the actual care. When the system gets it wrong, the damage does not stay on paper. It lands on disabled bodies, exhausted carers and families already stretched past capacity. That is why review and appeal rights matter.

A very real example of the danger of standardised or automated decision-making is what happened with ’s speech pathology funding. The planner told us that because got a new speech generating device, he would need less speech pathology. That was wrong. has complex communication needs, dysphagia and mealtime support needs. A device does not replace the speech pathologist who helps keep him safe, supports his communication, updates worker guidance and develops low-tech backups for when the device cannot be used. Because of that decision, his speech pathology funding was exhausted and we do not now have an up-to-date mealtime assistance plan or current PODD communication book. We urgently need to onboard a new support worker after one left suddenly, but our provider cannot do that safely without a current plan. So the result of this “efficient” decision is that I am now covering five of my son’s shifts a week myself, unpaid.

Our care plans explicitly record unpredictable overnight airway risk and the need for flexible, responsive staffing. As one clinical note states: “The new planning periods severely limit how [the participant] can be safely supported overnight as this cannot be predicted.” A fixed percentage reduction to community supports will not reflect that unpredictability and will create unsafe gaps.

The Government says this is about sustainability. From where I stand, it is cost-shifting dressed up as discipline. Cutting, narrowing or delaying support does not make need disappear. It pushes the cost onto unpaid carers, hospitals, schools, overstretched providers and an already strained health system. These are not savings. They are deferred costs, transferred pain and avoidable harm.

It is especially misleading to suggest the government can cut categories like participation funding and call that sustainability. For , support does not stop at the front door. The same care that keeps him safe at home is often the care that makes school, appointments, transport and community life possible. These cuts do not reduce need. They just push the shortfall back onto families.

The human reality: daily living supports are continuous

Daily living does not stop at the front door. For many participants, the supports labelled social and community participation are the same continuous supervision, clinical care and communication facilitation delivered in the home. A percentage cut to that category does not reduce need; it creates gaps in a continuous chain of care.

’s lived example is clear: PEG feeding five times daily; 2:1 transfers for toileting up to six times per day; repositioning and circulation care every 45–60 minutes; and continuous AAC facilitation. These supports operate across school, transport, appointments and community activities. Removing or capping community participation funding forces families to fill clinically dangerous gaps.

The foreseeable harms are increased risk of pressure injury, aspiration and choking, preventable hospitalisation, carer breakdown, loss of community participation and loss of dignity.

Ministerial caps and pricing powers — why this matters for

The Bill gives the Minister power to set caps, maximum intensities, worker-to-participant ratios and price limits that can override what a planner has found is actually needed. In practice, that means a planner can agree needs a certain level of funding to stay safe, but a ministerial cap or price can still force us to buy less than that. For a person who needs 2:1 transfers, multiple PEG feeds, communication support and unpredictable overnight interventions, that does not reduce need — it creates a predictable clinical shortfall. If caps or pricing rules are going to reduce what people can actually get, they should be set openly, published properly, and come with a clear explanation of their impact. There also needs to be a straightforward exemption where clinical evidence shows the cap would leave essential supports underfunded. A planner’s finding that a support is reasonable and necessary must not be overridden or hollowed out by a ministerial cap, price or other instrument set in an opaque or unreviewable way; any cap or price that reduces an individual’s funded supports below the assessed cost must be published with impact analysis and treated as a reviewable decision, with participants retaining access to independent merits review and the tribunal able to substitute a decision where necessary to protect safety.

Functional capacity testing is a blunt instrument for complex disability

The Bill’s proposed functional capacity test treats disability as if it exists independently of supports, assistive technology and environment, and as if one tool can measure all disability fairly. That is not how complex disability works. ’s ability to participate safely and meaningfully depends on trained workers, AAC, PEG feeding, equipment and careful

positioning. A test that ignores those supports will under-count his real needs. Any new tool should be published in draft, co-designed with disabled people and families, properly tested, and independently reviewed before it starts. It should also be required to assess people in the context of their real lives, not in a vacuum.

Reassessments, contactability and emergency pathways

The Bill extends reassessment decision timeframes to 90 days, removes deemed-decision protections, and allows plan suspension where a participant is “not contactable” after undefined “reasonable attempts.” That combination is dangerous for people who communicate via AAC or eyegaze and for participants whose support needs can change quickly when health or safety risks escalate. We already see the NDIA failing to use nominated communication methods. This Bill would turn that failure into a pathway to suspension and possible loss of supports. For families like mine, delay is not just frustrating. It can mean unsafe care, missed supports, and preventable harm.

Concrete fixes demanded:

1. Emergency reassessment: insert a statutory 14-day emergency reassessment pathway triggered by a treating practitioner, nominee, support coordinator or participant certification of imminent safety risk; a missed 14-day deadline operates as a deemed decision in the participant’s favour pending final determination.

2. Restore 21-day default: restore the 21-day decision timeframe and the deemed-decision safety net for all other unscheduled reassessments.

3. Contactability rules: define “reasonable attempts” in the Act to require documented contact attempts across every communication channel the participant has nominated (phone, email, SMS, nominated worker, support coordinator, AAC/eyegaze facilitation) and require welfare checks where contact attempts fail. Pause any suspension clock for hospitalisation, medical incapacity, communication breakdowns attributable to disability, and short-term travel. Remove any direct revocation pathway that bypasses the suspension period.

4. Enforce use of nominated methods: require the NDIA to record and demonstrate that it attempted contact using the participant’s nominated communication supports before any adverse administrative step is taken.

Automated decision-making and evidence hierarchies

The Bill expands automated decision-making and puts too much weight on general research while downplaying lived experience and the evidence of treating clinicians. For rare conditions and highly individualised supports, that kind of research often does not exist. Missing research should not become a reason to deny something a person clearly needs. No

automated decision that reduces supports should take effect without a human review, a clear explanation, and a real right to challenge it. The criteria and pathways used in those decisions should also be independently audited and made public.

One-off ordered items carryover at plan renewal

The Bill’s automatic plan renewal provisions risk wiping out one-off items that are already in train at the end of a plan, such as a wheelchair on order or a home modification that has been quoted but not yet built. That is an obvious drafting problem with immediate real-world consequences. If a one-off item has been quoted, ordered or otherwise actioned before the plan ends, it should carry over into the renewed plan until it is delivered and claimed, or for 12 months after renewal, whichever comes first.

Parental responsibility and adults living at home

is 18, at school and living at home. To suggest parental responsibility substitutes for funded supports ignores the scale, intensity and clinical nature of the care families already provide. I am also deeply offended by the addition of the word “substantial” to the Act, as if families are not already doing substantial care every day, often to the point of exhaustion. That wording does not recognise reality. It minimises the unpaid labour families are already carrying and makes it sound as though more can simply be extracted without consequence. That framing normalises cost-shifting onto carers and is inconsistent with the NDIS’s purpose.

Ordinary household costs versus disability-specific items

If the Committee wants a real example of how nice-sounding policy turns into human suffering, look at what happens when disability-related continence items are brushed off as ordinary household expenses. wears nappies full time. He is doubly incontinent. He is 18. When he soils himself, this is not a small inconvenience and it is not the same as buying baby wipes for a toddler. He is a grown young man with an adult body and pubic hair, and if there is no proper adult change facility — which is often the case — he can be left sitting in his own faeces while it dries into his skin and hair. He needs adult-sized, pH balanced wipes, gentle cleansers, barrier foams and protective creams because without them his skin breaks down. Without these products he becomes red, raw, inflamed and sore, sometimes to the point of bleeding. Then sitting in his wheelchair hurts. Cleaning him hurts. Moving him hurts. Calling these items general household goods is not a harmless administrative choice. It shows a complete failure to understand disability, continence, dignity, infection risk, skin integrity or what care actually involves.

Recommended amendments and requests to the

Committee

I am not saying the NDIS should stay exactly as it is. It does need reform. But reform should start with basic competence, common sense and real consultation with the people who have to live with these decisions. Slow this down. Go back to basics. Deal with fraud and waste properly. Lift the quality of decision-making. Respect complexity. Listen to disabled people, carers, advocates, clinicians and providers from right across the disability community, not just the voices that fit neatly into policy language. And keep the safeguards that matter, including the right to review and appeal poor decisions, because too many wrong decisions already cause real harm.

1. Restore merits review: Amend proposed section 34A so that any support determination that reduces an individual participant’s funded supports below the amount found to be reasonable and necessary is a reviewable decision. Ensure the tribunal retains full merits-review powers, including the power to substitute a decision.

2. Protect continuous daily living supports: Create automatic exemptions to any percentage reduction for participants whose plans document high-intensity or continuous supervision needs (including but not limited to 24/7 supervision, 2:1 hoist transfers, tracheostomy or airway management, PEG feeding with multiple daily feeds, and documented unpredictable overnight airway risk). Require the Minister to publish an impact statement and cohort-specific risk assessment before any determination.

3. Emergency reassessment pathway and restore timely reassessments: Insert a statutory 14-day emergency reassessment pathway for imminent safety risks; restore the 21-day decision timeframe and the deemed-decision safety net for other unscheduled reassessments.

4. Communication-sensitive contactability rules: Define “reasonable attempts” to require documented contact attempts across every communication channel the participant has nominated (including AAC and eyegaze facilitation), require welfare checks where contact attempts fail, pause suspension clocks for hospitalisation and communication breakdowns, and remove direct revocation without a suspension period.

5. Constrain automated decision-making: Defer ADM for plan content, claims, payments and pricing until legally enforceable safeguards are enacted: mandatory human review of adverse ADM decisions before they take effect, enforceable SOP publication requirements, independent auditing, and accessible appeal pathways.

6. Narrow transitional powers: Limit Schedule 5 Henry-VIII powers to narrowly defined transitional matters, shorten the duration, require mandatory consultation with the disability community before any rule is made, and make any rule affecting review rights subject to parliamentary disallowance.

7. One-off ordered items carryover: Amend section 50A so that one-off funding that has been quoted, ordered or otherwise actioned at the plan end date carries over into the renewed plan until the support is delivered and claimed, or for 12 months after renewal, whichever is earlier.

8. Transparency, monitoring and workforce impact: Require quarterly public reporting on plan suspensions, revocations, reassessment timeframes, claim reversals, ADM outcomes and unmet-need indicators; require an independent post-implementation review within two years with cohort-disaggregated safety metrics; and require a regulatory impact statement on workforce viability before any pricing or cap takes effect.

9. Debt and record protections: Extend the claim window for participants and self-managers to six months; require the NDIA to demonstrate non-entitlement before raising an automatic debt; and add statutory defences for reasonable record-keeping failures.

10. Nominee protections: Add a ‘reasonable steps’ defence for nominees and remove exposure to direct civil-penalty orders where nominees act in good faith.

Do not let support determinations or funding cuts start until these safeguards are in place and have been independently tested. Extend the consultation and implementation timetable so the rules, tools and systems are properly designed, trialled, audited and co-designed before they take effect.

Conclusion

This Bill treats disability as if it can be managed by cuts, caps and tighter rules, instead of recognising the real lives of people who need continuous support to stay safe and well. For families like mine, that is not an abstract policy choice. It means communication breakdown, choking risk, preventable hospitalisation, carer collapse and the steady loss of ordinary life. If Parliament is serious about securing the NDIS, it needs to keep review rights, stop caps from overriding what people actually need, design assessment tools around real life, guarantee fast emergency reassessment and communication-sensitive safeguards, and make sure one-off items do not disappear at plan renewal before any of these changes take effect.

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