NDIS Bill Will Exclude Australia’s Most Vulnerable

The Profound Autism Network (PAN), a carer-led, evidence-driven advocacy organisation for profoundly autistic Australians and their families, today urges the Senate to scrutinise and amend critical provisions in the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026.

Profoundly Autistic Individuals to be Excluded from Life-Changing Supports

MEDIA RELEASE

For Immediate Release

Sydney, Sunday 17 May 2026

New subsections 1E and 1F inserted into the Bill create a rigid evidence hierarchy. The NDIA CEO must now give the greatest weight to research that is “published, peer-reviewed and generalisable”. The CEO is explicitly permitted to refuse support if there is limited or no such generalisable evidence, even when strong participant-specific outcomes or clinical evidence exist.

“Profound autism is not rare, but it is chronically under-represented in research,” said a spokesperson for the Profound Autism Network. “The overwhelming majority of published autism studies focus on verbal, lower-support-need children, typically young boys from English-speaking, Western backgrounds. People with profound autism, those with high support needs, co-occurring intellectual disability, minimal or no speech, and significant safety and health vulnerabilities are largely invisible in the ‘generalisable’ evidence base.

“Under these new rules, many supports that keep our loved ones safe, healthy, and participating in daily life, including certain sensory, communication, behavioural, developmental, and psychosocial interventions, risk being deemed ‘not effective and beneficial’. This is not evidence-based policy; it is policy that ignores the very group with the highest needs.”

The Bill also contains no requirement for an independent research council or expert panel to assess the quality or applicability of evidence; all decisions on what counts as “generalisable” rest solely with the NDIA CEO and staff.

The Profound Autism Network acknowledges the need for NDIS sustainability. However, sustainability must not come at the expense of the most vulnerable participants. A one-size-fits-all evidence threshold that fails to account for profound autism’s heterogeneity will inevitably reduce access to reasonable and necessary supports for those who need them most.

The Senate Community Affairs Legislation Committee inquiry into the Bill closes for submissions on 29 May 2026 — just 12 days from today.

The Profound Autism Network calls on:

• All Senators to amend the Bill to include explicit safeguards for high-support-need and under-researched cohorts;
• The NDIA to develop clear, transparent guidelines that recognise practice-based evidence, participant outcomes, and lived experience alongside published research; and
• Peak bodies, clinicians, and families to make submissions highlighting the real-world impact on profoundly autistic Australians.

Media contact: CEO@profoundautismnetwork.org Profound Autism Network Website: profoundautismnetwork.org

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About the Profound Autism Network

The Profound Autism Network is a carer-led, evidence-driven movement working for systemic change in Australia. We advocate for the recognition of profound autism as a distinct high-support, high-vulnerability profile and for NDIS, education, health, and community services that meet the safety and inclusion needs of profoundly autistic people and their families.

NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026

New NDIS Bill Puts Autistic Children and Families at Serious Risk. Therapy caps, stricter access, automatic plan renewals, and increased parental burden will hit profoundly autistic individuals for generations to come.

NDIS Bill Risks Irreversible Harm to Profoundly Autistic Children

MEDIA RELEASE

For Immediate Release

Sydney, Saturday 16 May 2026

The National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 represents one of the most significant regressions in disability rights in Australia in over a decade. This Bill dismantles core protections for the most vulnerable NDIS participants, profoundly autistic children, while providing zero meaningful risk triage, mitigation strategy, or independent oversight.

The Profound Autism Network calls on the Senate to reject the Bill in its current form.

The Bill Dismantled: Key Provisions and Their Direct Impact on Profoundly Autistic Children

1. Flawed Functional Capacity Definition (Schedule 1, Part 1) The new definition in proposed section 9B requires assessment of what a child can do without assistance and in a context that excludes, as far as possible, the impact of the person’s environmental and personal circumstances. For profoundly autistic children, whose functioning is profoundly shaped by sensory, routine, and social environments, this is an artificial and punitive test. It will systematically understate need during access decisions and reassessments.
2. Severe Restriction on Plan Reassessments (Schedule 1, Part 2) Proposed section 48A limits unscheduled reassessments to only significant and ongoing changes in functional capacity or narrow life circumstances. Profoundly autistic children experience fluctuating and escalating needs, including developmental stages, puberty, behavioural changes, and co-occurring conditions, that frequently fall outside this rigid test. Families will be locked into inadequate plans with almost no pathway to seek adjustments.
3. Automatic Plan Renewals Without Scrutiny (Schedule 1, Part 5) Proposed section 50A forces automatic 12-month renewals of old framework plans. This removes any active review of current needs. For children with profound autism, whose support requirements can change rapidly, this mechanism guarantees under-funding over time.
4. Ministerial Power to Impose Therapy Caps (Schedule 1, Part 6 – new subsections 33(2EA) and 33(2EB)). The Minister can now set hard maximum funding amounts, maximum intensity (hours per week or year), and staffing ratios for therapies via legislative instrument. The explanatory material claims this will only occur where research shows more does not add benefit, yet the Bill contains no requirement for independent expert review of that evidence, no public consultation, and no appeal mechanism. Profoundly autistic children who require higher-intensity supports will be directly affected, with no safeguard against arbitrary caps.
5. Shift of Substantial Care onto Parents (Schedule 1, Part 6) The Bill introduces an explicit legal presumption that parents are responsible for substantial care and support, including supervision, emotional and behavioural support, and daily living assistance. The NDIS must not fund supports whose primary purpose is to reduce parental burden. This is a direct attack on families already at breaking point. It will increase carer burnout, family breakdown risk, and institutionalisation pressure.
6. Impairment-Based Approach Offers No Protection in Practice Although the NDIS remains impairment-based rather than diagnosis-based, and multiple impairments can technically be considered, the Bill’s restrictions on reassessments mean families cannot easily trigger a whole-person review. Even if additional impairments are identified, the stricter direct link, evidence thresholds, and funding controls make it far more likely that supports will be scrutinised or reduced rather than expanded.

Critical Failures: No Risk Triage, No Mitigation, No Independent Oversight

The Bill contains no published risk assessment of its impact on profoundly autistic children. There is no triage process to identify those at the highest risk of harm from reduced supports. There is no mitigation framework for the shift of burden onto families or the downstream pressure on state systems.

Most alarmingly, there is no independent oversight mechanism. No expert panel, including any role for the Administrative Review Council or similar body, no mandatory monitoring or public reporting on outcomes for high-needs children, and no requirement for independent review of therapy caps or functional capacity application. Decisions with life-altering consequences are left almost entirely to the NDIA and the Minister.

This is not responsible reform. It is legislation by assumption, the assumption that sustainability justifies removing protections from the most disabled children in Australia.

Call to Action

The Profound Autism Network urges the Senate Community Affairs Committee to reject the Bill in its current form, demand a full published risk assessment focused on profoundly autistic children, require the establishment of an independent expert oversight panel with lived experience, clinical and legal representation before any changes are implemented, and remove or substantially redraft the parental responsibility presumption and therapy cap powers.

Profoundly autistic children and their families cannot afford this experiment.

For further comment or interview: CEO, Profound Autism Network Email: CEO@profoundautismnetwork.org

About the Profound Autism Network The Profound Autism Network is a national alliance of families, clinicians, and advocates supporting children and young people with profound autism and high support needs. It exists to ensure their voices are heard in policy and law-making that directly affects their lives.

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NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026

This FAQ reflects the bill as introduced and the current government policy direction. Details (especially therapy caps and Thriving Kids design) are still being developed. Parents should treat this as a significant reduction in flexibility and prepare accordingly.

Harsh Realities for Parents of Profoundly Autistic Children

MEDIA RELEASE

For Immediate Release

Sydney, Saturday 16 May 2026

Will profoundly autistic children be protected under this bill?
No. While children with high and complex support needs are more likely to stay in the NDIS than those with moderate needs, the bill still removes flexibility and increases pressure on families. Automatic plan renewals, restricted reviews, therapy caps, and stronger parental responsibility rules will apply.

What happens to plan reviews and adjustments?
Unscheduled reassessments are now heavily restricted. You can only request one if there is a significant and ongoing change in functional capacity or specific circumstances (living arrangements, education, or informal supports). In practice, this makes it much harder to increase support when your child’s needs change or behaviours escalate. Most plans will simply roll over automatically every 12 months with limited ability to adjust.

Will my child’s therapy hours be capped?
Yes, they can be. The Minister can set maximum funding amounts, maximum intensity (hours per week or year), and staffing ratios for therapies. These caps can apply even to high-needs children if the government decides research shows “more does not add benefit.” Once set, plans generally cannot exceed these limits, regardless of what you or your child’s therapists believe is needed.

How will the new parental responsibility rules affect us?
The bill creates a clear legal presumption that parents must provide substantial care and support. This includes supervision, emotional and behavioural support, and daily living assistance. The NDIS is now less likely to fund supports whose main purpose is to reduce the burden on parents. In reality, this means less respite, less in-home support, and a greater expectation that families absorb more of the caring load.

Will it become harder to justify support for my profoundly autistic child?
Yes. Supports must now arise directly from the impairment that meets access criteria. Many supports that help with co-occurring issues (anxiety, sleep, behaviour that affects the whole family) or that partly relieve parental load will face greater scrutiny. Stricter evidence rules also apply — published research will be prioritised over clinical judgement or family reports.

What does the new functional capacity definition mean in practice?
It measures what your child can do without any assistance and tries to ignore environmental and personal factors. Even for profoundly autistic children, this definition can be used during reviews and may be used to argue that certain supports are not needed. It makes real-world functioning harder to argue for.

Can funding still be cut for high-needs children?
Yes. The Minister can make determinations that reduce funding percentages for groups of supports across plans. Automatic renewals and therapy caps add further mechanisms to limit spending. Profoundly autistic children are not exempt from these sustainability measures.

What happens if my child’s behaviours or needs worsen?
You will have limited options to get more support quickly. You must prove a “significant and ongoing” change in functional capacity that meets the strict new tests. Many families will be forced to manage escalating needs with existing (or reduced) funding while carrying a greater share of the load themselves.

Will the NDIS still fund the level of support my profoundly autistic child currently receives?
Not necessarily at the same level. Between restricted reviews, automatic renewals, possible therapy caps, and the push to rely more on parents and informal supports, many families should expect pressure to do more with less. The system is being redesigned to spend less overall.

What should parents of profoundly autistic children do right now?

Document everything in detail — functional impacts, behaviours, therapies tried, and what happens when supports are reduced.
Prepare for fights over evidence. Clinical reports alone may not be enough if they conflict with the government’s chosen research.
Assume plan reviews will be harder and plan accordingly.
Expect less respite and family support funding, and start considering how you will manage without it.
Watch closely for future Ministerial determinations on therapy caps and funding reductions — these will be legally binding.
Connect with other parents of profoundly autistic children. Collective pressure and shared information will be necessary.

What is the harsh reality?
Even for profoundly autistic children, this bill reduces flexibility, makes it harder to increase supports when needed, introduces the possibility of therapy caps, and explicitly shifts more responsibility onto parents. Families will face more bureaucracy, stricter evidence requirements, and greater pressure to manage complex needs with less formal support. The system is being tightened, not expanded.

The any good news in this bill for profoundly autistic children?
The main stated protection is that high-needs children should remain eligible for the NDIS rather than being moved to Thriving Kids. However, this does not protect funding levels, flexibility, or the amount of support families receive. The bill prioritises scheme sustainability over maintaining current levels of individualised support.

For further comment or interview: CEO, Profound Autism Network Email: CEO@profoundautismnetwork.org

About the Profound Autism Network The Profound Autism Network is a national alliance of families, clinicians, and advocates supporting children and young people with profound autism and high support needs. It exists to ensure their voices are heard in policy and law-making that directly affects their lives.

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