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:
Location: , Victoria (East Gippsland - regional) Capacity: Parent and carer of an autistic child
INTRODUCTION
I am writing as the parent of a child diagnosed with Level 2 autism spectrum disorder. We live in , in East Gippsland - a regional community with limited access to disability and early intervention services. I am not opposed to reform of the NDIS. I support efforts to make the scheme sustainable, and I am broadly encouraged by early intervention programs for children with autism and developmental delay. My concerns in this submission are specific and practical and relate to provisions in the Bill that will create disproportionate hardship for families in regional and remote Australia.
CONCERN 1: THE PERMANENCE TEST IS THE WRONG FRAMEWORK FOR A LIFELONG NEUROLOGICAL CONDITION
Part 8 of the Bill redefines “permanence” so that access to the NDIS will only be granted when all appropriate treatment to remedy or alleviate an impairment has been undertaken. This framing does not make clinical sense when applied to autism spectrum disorder.
Autism is not a condition that can be treated in the conventional meaning of that word. It is a lifelong neurological difference. There is no intervention - pharmaceutical, behavioural, or otherwise - that removes autism or reverses the underlying neurology. What early intervention and therapy can do is help a person develop skills and strategies that improve their ability to function and participate in daily life. That is valuable. But it does not change the permanence of the condition. A child who has completed speech therapy and occupational therapy is still autistic. The question was never whether autism could be cured - it was always what support that person needs to live well.
The “exhaust all appropriate treatment” test implicitly assumes that treatment might resolve the condition, making NDIS support unnecessary. For autism, that assumption is false. Applying a permanence test designed for conditions that may respond to treatment - a broken bone, an infection, a surgically correctable impairment - to a lifelong neurological condition produces outcomes that are not just unfair but medically unsound.
The original purpose of the NDIS was to ask: given that this person has a permanent disability, what support do they need to participate in life? The Bill’s new framing asks something closer to: have you tried hard enough to not need us? For autism, those are not equivalent questions. The first is appropriate. The second is not.
RECOMMENDATION
The Bill should explicitly provide that the “all appropriate treatment” requirement does not apply to conditions for which no treatment exists that can remedy or resolve the underlying impairment. For autism spectrum
DISORDER
Specifically, the determination of permanence should be based on clinical evidence of the diagnosis and its functional impact, not on whether the family has exhausted a treatment pathway that does not exist in any meaningful sense.
CONCERN 2: THE TEST DOES NOT ACCOUNT FOR REGIONAL ACCESS
Even setting aside the clinical incoherence described above, the practical application of the “all appropriate treatment” test creates a separate and serious problem for regional families. The Bill’s explanatory materials make clear that distance and cost will not be considered in assessing whether treatment has been “appropriately” accessed.
We live in , in East Gippsland. As a family managing a child’s autism diagnosis, we do not yet know what specific treatments the NDIA would consider we must exhaust before our child qualifies for support. That is precisely the problem. We do not know whether those treatments are available locally, in Traralgon, in Melbourne, or somewhere else entirely. Depending on where they are available, we could be looking at a significant round trip - potentially several hours each way - repeated over months, before eligibility is even considered.
This uncertainty is not a minor administrative inconvenience. It determines whether a family in a regional area can realistically comply with the eligibility requirements at all. Excluding distance and cost from the assessment does not make those barriers disappear - it simply makes them invisible to the decision-maker.
RECOMMENDATION
Part 8 should be amended to require that the assessment of whether “all appropriate treatment” has been undertaken must account for geographic accessibility, including travel time and distance, and the practical availability of services within the applicant’s region.
CONCERN 3: THE DEFINITION OF “APPROPRIATE TREATMENT” IS UNDEFINED,
DEFERRED, AND POTENTIALLY HARMFUL
Even for families who accept that some treatment pathway must be demonstrated, a separate problem remains: the Bill provides no definition of what qualifies. The detail is deferred entirely to a future legislative instrument - one that will be made after the Bill has passed, with no further opportunity for parliamentary scrutiny.
For children with autism, this ambiguity creates a serious risk. Some pharmaceutical interventions that technically exist for autism-related symptoms are associated with significant adverse effects, are not routinely recommended for young children, and many clinicians actively advise against them except in specific circumstances. The Bill as written provides no clarity on whether families may be required to trial such interventions before qualifying - or whether a qualified clinician’s recommendation against a particular treatment on safety or wellbeing grounds is sufficient to satisfy the threshold.
Leaving this definition entirely to a future ministerial instrument is not acceptable for legislation of this consequence. Families need to know what is required of them before this Bill becomes law - not after.
RECOMMENDATION
The definition of “appropriate treatment” should be included in the legislation itself, not deferred to a future instrument. At minimum, the Bill should explicitly provide that a treatment is not “appropriate” where a qualified clinician has recommended against it on the basis of likely adverse effects, or where the potential harm to the individual outweighs the anticipated clinical benefit.
CONCERN 4: MINISTERIAL POWER TO EXCLUDE IMPAIRMENTS REQUIRES
INDEPENDENT OVERSIGHT, NOT A SINGLE DECISION-MAKER
Part 9 of the Bill grants the Minister the power to declare, by legislative instrument, that any support constitutes an alternative support for any impairment. If such a declaration is made, individuals with that impairment have an excluded condition and lose NDIS eligibility. This power is not limited in scope - it applies to any impairment and any support the Minister nominates. It requires no parliamentary vote and is subject to no defined criteria about whether the alternative support is adequate, accessible, or even operational.
This is a significant governance concern. Decisions about whether an alternative support is a genuine and sufficient substitute for NDIS access are not minor administrative matters. They directly determine whether people with disability receive support at all. Concentrating that power in a single ministerial decision, with no independent assessment and no requirement to demonstrate that the alternative is actually accessible to the people being redirected, is not an appropriate way to make decisions of this consequence.
The problem is compounded for regional and remote families. A ministerial determination that an alternative support exists says nothing about whether that support is available in East Gippsland, or regional Western Australia, or anywhere outside a metropolitan centre. A person losing NDIS eligibility because the Minister has declared an alternative support exists - when that support is in practice hours away or not yet operational in their area - has not had their needs met. They have simply been administratively excluded.
RECOMMENDATION
The power to designate alternative supports and exclude impairments from NDIS eligibility should not rest with the Minister alone. The Bill should establish an independent advisory board or panel - including people with disability, clinicians, and regional community representatives - with a mandate to assess proposed alternative supports against defined criteria before any exclusion takes effect. Those criteria should include: whether the alternative support is evidence-based and clinically appropriate for the impairment in question; whether it is demonstrably available and accessible across all geographic areas affected; and whether it has been independently evaluated as providing equivalent outcomes to NDIS support. No exclusion should take effect until those criteria are met.
CONCERN 5: THE BILL PLACES A COMPLIANCE BURDEN ON FAMILIES THAT IS NOT
EQUALLY DISTRIBUTED
The Bill’s eligibility mechanisms - particularly the requirement to exhaust all appropriate treatment before permanence is confirmed - place the burden of compliance squarely on families. It is families who must identify what treatments apply, locate providers, travel to appointments, persist through a process that may take months, and then demonstrate to the NDIA that they have done enough. The Bill does not account for the fact that this burden is not equally distributed.
The practical cost is substantial. Accessing early intervention or specialist services from a regional location involves fuel, time off work, and the sustained physical and mental load of managing a young child with complex needs across long distances - potentially multiple times a week, over an extended period. For families already under financial pressure, or where a parent has their own health challenges, or where there is only one parent managing everything, the compliance pathway the Bill creates is not realistic. These are not edge cases. They are a significant proportion of the families most likely to need NDIS support.
There is a harder point that also needs to be made: not all parents are in a position to navigate complex systems effectively on behalf of their children. Some are dealing with their own disability, mental illness, or crisis. Some are simply not engaged. The children in those families did not choose their circumstances, and a support system that requires sustained, capable parental advocacy as a precondition for access will leave those children with nothing. The children most likely to fall through are not randomly distributed - they are disproportionately children already living with disadvantage and intergenerational hardship.
RECOMMENDATION
The government should commission and publish an equity impact assessment of the proposed eligibility changes before the Bill passes, specifically examining outcomes for children in regional and remote areas, children from low-income families, and children whose parents have limited capacity to engage with complex administrative processes. The NDIA should also be required to provide proactive outreach and navigation support to families in these cohorts, rather than placing the full burden of compliance on families alone.
CONCLUSION
I support a sustainable NDIS and I support reform. What I cannot support is legislation that achieves sustainability by shifting the burden of access onto the families who are hardest to reach, applying a permanence test that does not reflect the clinical reality of autism, or concentrating consequential decisions about eligibility in ministerial instruments with no independent scrutiny.
The five recommendations above are targeted and practical. They would not undermine the Bill’s objectives - they would make the Bill’s operation fairer and more grounded in the actual experience of autistic children and their families, in regional communities and elsewhere.
The committee will hear from policy experts and peak bodies. What I can offer is what the Bill looks like from a regional community, with a young autistic child and genuine uncertainty about what compliance with these new eligibility requirements would even mean for our family. I hope that is useful.