Submission 2908 — Name Withheld — NDIS Future Generations Bill | External submission

Name not to be published with submission

Submission on the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Introduction

I am a 39-year-old Autistic woman (assessed as level 2 across both domains at time of assessment) with multiple co-occurring conditions. Being diagnosed as Autistic under the DSM-V criteria, I have a legally recognised disability in Australia.

I am part of the generation of AFAB Autistic who were not recognised as having support needs. This resulted in years of incorrect diagnoses, undergoing various treatments and medications to which I was treatment-resistant and many had harmful and lasting side effects. Misdiagnoses include: complex eating disorders, anxiety, panic disorders, GAD, OCD, PND, PNA.

I have been a Paediatric nurse for 20 years, worked in disability and out of hospital strategy. I have undergone Inklings Practitioner training therefore when I say I do not believe programs like this are suitable for Autistic parents, I say this with firm understanding of the intent and delivery of this program.

I am the proud mother of two wonderful Autistic children with complex support needs including being non-speaking. They are both NDIS participants aged under 8. They receive capacity building (therapy) support funding, one receives funding to have his AAC screen repaired, if necessary, once per year. We do not get respite, support worker hours, consumables or support coordinator funding as the NDIA claim this is all parental responsibility. My child with the least complex needs on formal FCA was identified as requiring 22.5 hours additional care to typically developing peers of the same age, my other child was deemed closer to 80 hours. This child is currently unwell with a vomiting illness. He struggles to protect his airway. He cannot call out to me for help. I have been sitting awake overnight to ensure he does not aspirate. This is not typical “parental responsibility” for a child his age.

These children are the absolute light of my life and I sacrificed applying for NDIS as I never wanted my having support to mean theirs would be decreased. Instead, I opted to self-fund my supports. Because of this, I desperately attempted to continue my 20-year career in healthcare however upon disclosure of my diagnosis and request for a flexible working arrangement to enable me to work and meet the complex need of my children, I began experience sustained workplace discrimination. I have been unable to return to work for 12 months now, with a complete loss of income and being required to obtain reports from my therapists to determine I am capable of empathy and other appalling autistic stereotypes.

The isolation and discrimination from a workplace I gave 20 years of dedicated service to and having won various awards for my skills, a workplace that falls under the South

Australian Autism Charter and the Disability Discrimination Act has taken an extraordinary toll on both my mental and physical health, now having cPTSD and hyperadrenergic POTS, MCAS, hEDS added to my already exhaustive list. In the meantime, as someone who is not an NDIS participant, I have lost the income that paid for the therapies I was self-funding, only further impacting my functional capacity. As I still have a position, I am ineligible for unemployment payments.

Last year I was planning to take my life due to being unable to manage my life. Once a “high achieving” (IQ >145) but ”overly dramatic” primary school child, I am now begging for financial assistance from friends to not lose my home and essentially unemployed. Crisis systems are unable to help as they don’t know how to find solutions for respite for my children to assist my recovery.

I am part of the huge population of skilled workforce now acting as informal carers either un or underemployed as we devote our lives to those we care for. I am stuck. My life is a warning of what happens when support isn’t provided until crisis.

I am the granddaughter of German migrants who refused institutionalisation of their disabled son. They had left a country where he would have been admitted to a “Kinderfachabteilung” and been subjected to the T4 program. Where people with disability experienced eugenics-based anhilation after strong media -based positioning of the disabled population as “Ballastexistenzen” (“burden existences”) or “nutzlose Esser” (“useless eaters”). Where people with disability were portrayed rather than contributing to society, as drains on the economy for the general population. Posters that read “60.000 RM kostet dieser Erbkranke die Volksgemeinschad auf Lebenszeit. Volksgenosse, das ist auch dein Geld!” (translation: “60 000 Reichsmarks is what this person suﬀering from a hereditary defect costs the People’s community during his lifeime. Fellow ciizen, that is your money too.”)

These past few months disabled Australians have been hearing similar phrases from media personal and society at large. I hope the parliament can stop to reﬂect with empathy on the impacts of this bill beyond my review below.

Executive Summary

I support the long-term sustainability of the National Disability Insurance Scheme (NDIS), efforts to address fraud and misuse, and reforms that improve service quality and participant outcomes.

My concern is not with the objectives of the Bill, but with whether several provisions are likely to achieve those objectives in practice.

The Government has stated that this Bill implements recommendations arising from the Disability Royal Commission and the Independent Review into the NDIS. However, I am concerned that several provisions appear to restrict access to support before the broader reforms recommended by those processes have been implemented.

As an Autistic Australian, my primary concern is that the Bill repeatedly treats disability as something that can be assessed separately from environment, family circumstances and support systems. For Autistic people, this is often impossible.

Several provisions raise particular concerns:

proposed section 9B assesses functional capacity while excluding environmental and personal circumstances;
proposed subsections 34(1G)–34(1J) assume substantial parental capacity without adequately recognising multigenerational disability;
proposed subsection 24(5) requires “all appropriate treatment” before an impairment can be considered permanent;
proposed paragraph 34(1)(g) shifts responsibility to mainstream systems and foundational supports that frequently do not yet exist in practice;
proposed section 34A grants broad ministerial powers to reduce funding categories; and
proposed sections 48A and 50A may reduce the Scheme’s responsiveness to fluctuating disability while limiting review rights.

Individually, these provisions may appear reasonable. Collectively, they risk increasing reliance on families, narrowing understandings of disability and reducing access to support before alternative systems are capable of meeting need.

I urge the Committee to amend the Bill to ensure sustainability is achieved in a manner consistent with the Disability Royal Commission, the NDIS Review, the National Autism Strategy and Australia’s obligations under the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD).

The future of the NDIS will not be secured through cost control alone. It will be secured by maintaining a Scheme that enables disabled Australians to participate fully in society and access supports that reflect the realities of their lives.

Concern 1: Proposed Section 9B – Functional Capacity and Environmental Context

Proposed section 9B requires functional capacity to be assessed without assistance from other people, assistive technology or modifications and in a context that excludes, as far as possible, environmental and personal circumstances.

I am concerned that this approach is inconsistent with contemporary understandings of disability and autism, particularly Brofenbrenner’s Taxonomy where the biopsychosocial impacts of disability are clearly identified as resulting from systemic gaps between each of the ecosystems surrounding an individual. Autism affects each of the three family members under this roof in vastly different ways and we each interact with different systems.

The UNCRPD recognises that disability arises through the interaction between individuals and the barriers they encounter within society. Similarly, both the social and biopsychosocial models of disability recognise that disability cannot be understood solely by examining an individual’s impairment in isolation.

For Autistic people, environmental factors are often central to how disability is experienced.

An Autistic person may be able to attend school, maintain employment or participate in community life because supports and accommodations are already in place. These may include sensory adjustments, communication supports, workplace accommodations, support workers or informal support provided by family members.

Removing those factors from consideration risks creating an artificial assessment of functioning that does not reflect everyday reality.

Autism is also highly heterogeneous. The Autism CRC has observed that pronounced heterogeneity exists across every aspect of autism. The same Autistic person may function well in one environment and experience substantial disability in another.

This does not mean disability is absent. It means disability is context-dependent.

I am particularly concerned about the impact of this provision on Autistic women and girls, who are more likely to mask Autistic traits, develop compensatory strategies and have their support needs underestimated. A framework that prioritises observable functioning while excluding context risks further disadvantaging people whose difficulties are already less visible.

While proposed section 9B appears intended to improve consistency in decision-making, I am concerned it may instead reduce accuracy. A person’s ability to perform a task during an assessment does not necessarily mean they can perform that task consistently, safely or without significant support in everyday life.

In practice, this provision may underestimate support needs, delay access to assistance and increase the likelihood of burnout, mental health deterioration, educational disengagement and family stress.

Recommendation

Amend proposed section 9B so that assessments of functional capacity explicitly consider environmental factors, accommodations, assistive technology, support networks and fluctuating support needs.

For Autistic Australians, disability cannot be accurately understood in isolation from the environments in which people live, learn, work and participate.

Concern 2: Proposed Subsections 34(1G)–34(1J) – Parental Responsibility and

Multigenerational Autism

Proposed subsections 34(1G)–34(1J) establish principles regarding parental responsibility and indicate that the NDIS should not fund supports that primarily reduce responsibilities that would ordinarily be expected of a parent.

I understand the principle that parents should undertake ordinary parenting responsibilities. However, I am concerned that these provisions do not adequately recognise the realities of autism and disability within families.

The provisions appear to assume a non-disabled parent with the capacity to coordinate services, attend appointments, advocate within multiple systems, support educational participation and absorb additional caring responsibilities.

For many Autistic families, this assumption does not reflect reality.

Autism is highly heritable. Autistic children frequently have Autistic parents, Autistic siblings or other family members with disability or neurodivergence. Support needs therefore often exist across an entire household rather than within a single individual.

This concern is particularly important given the broader evidence regarding autism and family outcomes in Australia. The 2022 Senate Select Committee on Autism concluded that “life outcomes for Autistic Australians are unacceptably poor” and emphasised that Autistic Australians and their families often experience significant difficulties accessing appropriate services and supports. The Committee also recommended that any National Autism Strategy be person- and family-centred and address whole-of-life needs across the lifespan.

These outcomes do not affect individuals alone. They affect entire family systems, including parents, siblings and carers who frequently provide substantial unpaid support when formal systems fail to meet need. Carers of Autistic people report some of the highest levels of psychological distress, loneliness and dissatisfaction with their caring role compared with other caring groups.

This is particularly important because support needs do not operate in isolation. An Autistic child who requires assistance with emotional regulation, communication, daily living skills or school engagement may be supported by a parent experiencing their own executive functioning challenges, sensory sensitivities, mental health difficulties or disability-related barriers.

The practical effect is that the capacity of the family to provide support may be significantly lower than policy assumptions suggest.

The 2022 Senate Inquiry into Autism recognised that Autistic Australians experience poorer outcomes across education, employment, health and social participation. These outcomes affect not only individuals but entire families and support networks.

Today’s Autistic children frequently become tomorrow’s Autistic adults raising Autistic children of their own. Programs like Inklings are designed with the expectation the parent will engage and interact as an allistic person.

For this reason, I am concerned that the Bill focuses on the support needs of the individual child while giving insufficient consideration to the capacity of the family system supporting that child.

I am also concerned by assumptions that mainstream parenting supports can fill gaps left by reduced disability supports.

Many parenting programs rely on communication styles, social expectations and service delivery models that may be inaccessible to Autistic parents. Group-based programs, telephone-only services and highly abstract parenting guidance may be theoretically available while remaining practically inaccessible. The last 12 months, I have only rarely been able to leave my property. I have lost the capacity to drive. My children found playgroups terrifying and the toll for me as an Autistic adult attending such over-stimulating settings would impact my capacity to parent my children for days following. I cannot manage any audio phone calls due to auditory processing disorder. Online programs do not allow for me to ask questions, clarify points or consider the “bottom up” cognitive style of Autistic people.

The existence of a service does not mean it is accessible.

The Disability Royal Commission warned against excessive reliance on unpaid family care and recognised that many disabled people rely on family members for essential support. I am concerned that these provisions may unintentionally increase that reliance by

transferring responsibility from formal support systems to families that are already operating at capacity.

Recommendation

Amend proposed subsections 34(1G)–34(1J) to require consideration of:

parental disability and neurodivergence;
cumulative support needs within households;
multigenerational disability;
fluctuating family capacity; and
the accessibility of alternative parenting and family supports. Support decisions should recognise that Autistic children often live within families where disability is shared, support needs are cumulative and participation depends on the wellbeing of the entire household.

Concern 3: Proposed Subsection 24(5) – “All Appropriate Treatment” and Autism

Proposed subsection 24(5) provides that an impairment is not considered permanent unless “all appropriate treatment” has been undertaken.

I am concerned that this provision creates a particular problem for Autistic Australians because autism is a lifelong neurodevelopmental disability with no cure and no clear endpoint at which treatment can reasonably be considered exhausted.

The Bill does not define what constitutes “all appropriate treatment”, how long treatment must be undertaken, or how decision-makers will determine when sufficient treatment has occurred.

For autism, this creates an unclear and potentially unlimited threshold. The Senate Select Committee on Autism recognised that Autistic Australians and their families often face substantial barriers accessing the services and supports they require and concluded that maintaining the status quo was “simply not an option”.

A legislative requirement to demonstrate that “all appropriate treatment” has been undertaken risks creating further barriers for families already navigating workforce shortages, long waitlists and significant out-of-pocket costs.

The Autism CRC has identified a broad range of evidence-informed interventions and supports that may be appropriate for Autistic people at different stages of life. These include speech pathology, occupational therapy, psychology, social communication interventions, parent coaching and educational supports.

The practical question is therefore simple: when has enough treatment been undertaken?

Without clear safeguards, Autistic people may be required to demonstrate not only that they are disabled, but that they have exhausted an extensive and potentially open-ended

list of interventions before that disability can be recognised as permanent. This realisically would require hundreds of thousands of dollars outlay in exhausing all “treatments”. This is out of reach of the majority of families of Auisic people.

This risks disadvantaging families based on factors outside their control.

Access to autism-related services varies significantly depending on location, workforce availability, waiting lists and financial capacity. Many families face years-long delays accessing assessments and therapy. Others simply cannot afford to privately fund years of intervention.

At current NDIS therapy rates, the cost of attempting a broad range of evidence-informed autism interventions could amount to tens or even hundreds of thousands of dollars over a person’s lifetime. Families should not be required to demonstrate that they have the financial capacity to pursue every available intervention before disability support becomes available.

I am also concerned about interventions that remain controversial within the Autistic community. Applied Behaviour Analysis (ABA), for example, remains the subject of significant debate, with many Autistic adults and Autistic-led organisations raising concerns regarding compliance-based approaches and their long-term impacts.

Participants should not be placed in a position where access to disability support depends upon undertaking interventions that they reasonably consider inappropriate, ineffective or potentially harmful.

Most importantly, the purpose of the NDIS is to support participation and address the functional impacts of disability. It is not to require people to prove that every possible treatment option has been exhausted before support can be accessed.

Recommendation

Amend proposed subsection 24(5) to clarify that autism is a lifelong neurodevelopmental disability and that permanence does not require exhaustion of every available intervention.

Participants should not be disadvantaged by treatment costs, workforce shortages, service availability or a decision not to undertake interventions they reasonably consider inappropriate or harmful.

Concern 4: Proposed Paragraph 34(1)(g) – Foundational Supports and Mainstream

Systems

Proposed paragraph 34(1)(g) provides that supports should not be funded under the NDIS where they are more appropriately provided by another government service, community support or mainstream system.

In principle, I agree that the NDIS should not replace education, health or community services.

The question is not whether other systems should provide support. The question is whether those supports are actually available.

This is where I am concerned that the Bill departs from the intent of the Independent Review into the NDIS.

A central recommendation of the Review was the creation of foundational supports available outside the Scheme. The Review did not recommend simply reducing access to the NDIS. It recommended building a broader support ecosystem so that people could access appropriate assistance without needing to enter the Scheme.

The sequencing of these reforms matters.

The NDIS Review envisaged foundational supports first, followed by a reduced reliance on the NDIS for supports that could be effectively delivered elsewhere.

This Bill appears to allow the opposite outcome. Participants may lose access to NDIS funded supports before alternative supports are consistently available, adequately funded or accessible.

For Autistic Australians, this distinction is critical.

Many Autistic people and families continue to experience significant barriers in mainstream systems, including workforce shortages, lengthy waitlists, regional service gaps, fragmented service pathways and limited autism expertise.

The existence of a service on paper does not mean that service is available in practice.

This issue is particularly relevant for Autistic children. Schools are often assumed to provide supports that many families struggle to access. Likewise, mainstream parenting and family services are frequently assumed to be available despite often being inaccessible to Autistic parents because of communication, sensory or executive functioning barriers.

When mainstream systems fail to meet need, responsibility does not disappear. It is transferred. 10 years ago “social admissions” were allowed at tertiary paediatric centres. These days they are not and result in reporting to Child Protection services. Carers Australia and their State and Territory arms do not have appropriate funding or the resources carers are begging for. We don’t need more parenting courses, we need genuine support.

Most often, it is transferred to families. The Disability Royal Commission recognised that many people with disability rely on family members, friends and support workers to provide essenial supports and warned against systems that leave disabled people dependent on informal care because appropriate formal supports are unavailable. The Commission’s broader reform agenda emphasised paricipaion, inclusion and reducing barriers across mainstream systems rather than increasing reliance on unpaid family care. This is paricularly concerning given the Senate Auism Inquiry’s ﬁnding that life outcomes for Auisic Australians remain unacceptable poor and require systemic, whole-of-life reform rather than further barriers to support.

The Disability Royal Commission warned against excessive reliance on unpaid family care. I am concerned that proposed paragraph 34(1)(g), combined with the absence of fully implemented foundational supports, risks increasing precisely that reliance.

Recommendation

Amend proposed paragraph 34(1)(g) so that responsibility cannot be transferred to another system unless that system is demonstrably available, accessible, adequately funded and capable of meeting the participant’s needs.

The NDIS Review recommended building supports around disabled people before restricting access to the Scheme. The implementation of this Bill should follow that same principle.

Concern 5: Proposed Section 34A – Ministerial Powers and Executive Overreach

Proposed section 34A allows the Minister to determine that funding for certain classes of supports may be reduced below 100 per cent of their cost, including supports that have already been recognised as reasonable and necessary.

I am concerned that this provision represents a significant transfer of decision-making authority from Parliament to the Executive.

The NDIS is one of Australia’s most significant social policy reforms. Decisions about what supports disabled Australians can access should be subject to robust parliamentary scrutiny and public accountability.

While legislative instruments are subject to some oversight, they do not receive the same level of parliamentary debate, public scrutiny or opportunity for amendment as primary legislation.

My concern is not limited to the current Government. Proposed section 34A creates powers that will be available to future governments regardless of their policy priorities.

This is particularly relevant given the stated purpose of the Bill: securing the NDIS for future generations.

Security requires more than financial sustainability. It also requires certainty.

Autistic people and their families often make long-term decisions about housing, education, employment, family life, assistive technology and home modifications based on assumptions about future support arrangements. The broader the power to alter support categories through ministerial determination, the greater the uncertainty surrounding those decisions.

I am also concerned by the principle that a support may be recognised as reasonable and necessary, yet not be fully funded.

Many supports commonly accessed by Autistic participants are preventative in nature. They help maintain participation, reduce family stress, support education and employment, and prevent escalation into crisis. Reducing access to these supports may generate short-term savings while increasing long-term costs elsewhere.

Recommendation

Remove or substantially amend proposed section 34A.

At a minimum, any decision to reduce funding for categories of support should require parliamentary scrutiny, public consultation and publication of a disability impact assessment.

If the objective of the Bill is to secure the NDIS for future generations, then future generations should be able to rely on a Scheme that is not only financially sustainable, but also transparent, accountable and predictable.

Concern 6: Proposed Sections 48A and 50A – Fluctuating Disability, Reassessment and

Review Rights

Proposed section 48A introduces new requirements before a participant can request reassessment of their plan. Proposed section 50A introduces automatic plan renewals and provides that renewed plans are not reviewable decisions.

While these provisions appear intended to improve administrative efficiency, I am concerned that their combined effect may make the NDIS less responsive to the realities of autism.

Autism is a lifelong disability, but support needs are not static.

Many Autistic people experience periods of increased support need associated with life transitions, loss of informal supports, mental health deterioration, Autistic burnout, changes in employment or education, or changes in family circumstances.

These changes may be significant without being permanent.

This concern is recognised in the DSM-5 itself, which states that autism severity levels may vary by context and fluctuate over time. The DSM-5 explicitly cautions that severity categories should not be used to determine eligibility for services because support needs are influenced by both environmental demands and available supports.

I am concerned that proposed section 48A sets a threshold that may require participants to experience substantial deterioration before reassessment becomes available. This risks creating a system that responds to crisis rather than preventing it.

For Autistic people, early support is often the difference between maintaining participation and experiencing burnout, educational disengagement, unemployment or mental health decline.

I also have concerns about the interaction between automatic plan renewals and reduced review rights.

Automatic renewals may be appropriate where support needs are genuinely stable. However, autism frequently involves changing support needs across different life stages. A participant may remain eligible for the NDIS while requiring very different supports because of school transitions, entry into employment, leaving home, parenting responsibilities or burnout.

The provision that renewed plans are not reviewable decisions raises additional concerns regarding procedural fairness.

Review rights are an important safeguard within the NDIS. They recognise that circumstances change, information may be incomplete, and decisions may not always reflect a participant’s actual needs.

Taken together, proposed sections 48A and 50A risk creating a Scheme that is less responsive to changing circumstances while also limiting participants’ ability to challenge decisions that affect them.

This appears difficult to reconcile with the Disability Royal Commission’s emphasis on autonomy, participation and supported decision-making.

Recommendation

Amend proposed section 48A to explicitly recognise fluctuating disability, Autistic burnout and changing support needs.

Remove proposed subsection 50A(4) and preserve participants’ rights to seek review, reconsideration and independent merits review.

A sustainable NDIS should be responsive to changing need. Participants should not be required to reach crisis point before support adjustments become available.

Overall Recommendations

I respectfully recommend that the Committee amend the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 as follows:

Amend proposed section 9B to ensure functional capacity assessments consider environmental context, accommodations, assistive technology, support networks and fluctuating disability.
Amend proposed subsections 34(1G)–34(1J) to require consideration of parental disability, multigenerational disability and cumulative household support needs.
Amend proposed subsection 24(5) to clarify that autism is a lifelong neurodevelopmental disability and that permanence does not require exhaustion of every available intervention.
Amend proposed paragraph 34(1)(g) so that responsibility cannot be transferred to mainstream systems unless those systems are demonstrably available, accessible, adequately funded and capable of meeting need.
Remove or substantially amend proposed section 34A to ensure significant funding decisions remain subject to parliamentary scrutiny and public accountability.
Amend proposed sections 48A and 50A to recognise fluctuating disability and preserve participants’ review rights.
Implement foundational supports before restricting access to NDIS supports, consistent with the sequencing recommended by the Independent Review into the NDIS.
Undertake an autism-specific impact assessment of the Bill before implementation, including impacts on Autistic children, Autistic adults, Autistic women and girls, Autistic parents and multigenerational Autistic households.

Conclusion

I support the long-term sustainability of the NDIS and recognise the need for reform.

My concern is that several provisions of this Bill may have unintended consequences for Autistic Australians and their families.

Throughout this submission, I have argued that autism is a lifelong, heterogeneous and context-dependent disability. Support needs are shaped not only by the individual, but by their environment, family circumstances and access to appropriate supports.

Several provisions of the Bill appear to move in the opposite direction by separating disability from context, increasing reliance on unpaid family care, restricting access to support before foundational alternatives exist and reducing the Scheme’s responsiveness to changing need. This is paricularly concerning given the Senate Auism Inquiry’s ﬁnding that life outcomes for Auisic Australians remain unacceptably poor and require systemic, whole of-life reform rather than further barriers to support.

I am particularly concerned that Autistic children may be assessed in isolation from the realities of Autistic family systems, and that Autistic adults may be expected to navigate increasingly complex requirements despite the very executive functioning and communication challenges that create their need for support.

The Government has stated that this Bill is intended to secure the NDIS for future generations. I support that objective. However, a sustainable NDIS should not be measured solely by expenditure. It should also be measured by its ability to support participation, inclusion, independence and long-term wellbeing.

I respectfully urge the Committee to amend the Bill to ensure that sustainability is achieved in a manner consistent with contemporary understandings of autism, the recommendations of the Disability Royal Commission and NDIS Review, and Australia’s commitment to the rights and inclusion of people with disability.

Future generations deserve an NDIS that is not only financially sustainable, but also fair, responsive and grounded in the realities of disability as it is actually experienced.