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

Date: 25th May 2026

Recipient: Committee Secretary, Senate Standing Committees on Community Affairs PO Box 6100 Parliament House Canberra ACT 2600

Dear Committee Members,

Re: National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Thank you for the opportunity to provide feedback on the above-mentioned legislation. In this submission, I will:

• Outline my concerns regarding the proposed changes;
• Provide lived experience of the impacts of the proposed changes as a parent, child representative, nominee and carer of two participants.

Context

I am the mother of two NDIS participants — one child and one adult — and I act as both a child representative and nominee. Both of my daughters live with profound and rare neurological disabilities. Their rarity has meant that securing appropriate and meaningful support through the NDIS has been an exhausting and relentless battle from the very beginning. At every stage, the burden has fallen squarely on me to prove the severity of their disabilities and justify their right to adequate support. Despite providing extensive medical evidence, specialist reports, functional assessments, therapy recommendations, and countless hours of documentation, both of my daughters were repeatedly and significantly underfunded. It should never require families to fight through the Administrative Appeals Tribunal in order to receive plans that genuinely reflect their needs — yet that is exactly what I was forced to do. Before my daughters’ diagnoses, I was a highly experienced and dedicated Special Education teacher with more than 25 years in the profession. Teaching was not simply a

career to me; it was my vocation.

I was passionate about my work, highly skilled, and had every intention of continuing my career long term.

That life changed completely when my youngest daughter was diagnosed at just eight months old. I initially took leave from teaching to ensure she could access the intensive therapies and interventions she required to maximise her development, build capacity, and mitigate the lifelong impacts of her disability. At the time I believed that I would eventually return to teaching once she started school.

However, during that period, my eldest daughter was also diagnosed with a significant disability. The reality of caring for two children with complex and profound support needs made returning to my profession impossible — even once both children were attending school.

The care burden extends far beyond day-to-day parenting. A substantial portion of my life is consumed by the administrative demands associated with disability and the NDIS itself: coordinating appointments, sourcing reports, managing therapies, completing paperwork, advocating with providers, responding to reviews, navigating systems, and constantly fighting for supports that should never have to be fought for in the first place. The workload is relentless and far exceeds anything required of parents of typically developing children. This experience is not unique to my family. It is the reality faced by countless carers across Australia.

While I understand and support the principle that the NDIS must remain sustainable for future generations, sustainability cannot come at the expense of participants and the families who hold the system together through unpaid labour, advocacy, and sacrifice. The proposed changes to the NDIS have created widespread fear, uncertainty, and distress amongst participants, carers, and families. This has been made significantly worse by the lack of transparency and detail surrounding what these changes will actually look like in practice, how they will be implemented, and who will be involved in decision-making. Families who are already overwhelmed are being left to navigate confusion, anxiety, and instability without clear information or reassurance.

People with disability and their families deserve a system that is transparent, fair, compassionate, and genuinely responsive to their needs — not one that forces them into constant crisis and adversarial battles simply to access the supports required to live with dignity.

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Cuts are not based on a participant’s actual needs. They are blanket reductions imposed in the name of scheme sustainability. Even more concerning is the proposal to grant the Minister sweeping powers to reduce or remove additional categories of support at their discretion, without any genuine right to independent review or appeal. Participants and families will effectively be stripped of procedural fairness and denied meaningful avenues to challenge decisions that profoundly affect their daily lives and wellbeing. The threshold for what constitutes appropriate support will also be lowered. Rather than focusing on what is “reasonable and necessary” for an individual participant to live safely, independently, and with dignity, the emphasis shifts toward what is considered “reasonable” for the financial sustainability of the Scheme. This represents a fundamental departure from the individualized approach that the NDIS was founded upon.

The consequences of these changes will be devastating.

  Reducing community access supports will further isolate people with disability from

society and undermine their mental health, independence, and quality of life. Participants who rely on these supports to engage in everyday activities will be forced into impossible choices: attending medical appointments, buying groceries, participating in their community, maintaining friendships, or simply leaving the house. What most Australians take for granted will become inaccessible luxuries. These cuts will also place unsustainable pressure on informal supports, particularly ageing parents and carers who are already stretched beyond capacity. While some may argue this burden is manageable when participants are children, the long-term reality is far more concerning. As participants reach adulthood, these reductions will strip away independence, autonomy, and opportunities for meaningful participation in society. The message these reforms send is deeply troubling: that the sustainability of the Scheme matters more than the actual needs, dignity, and humanity of the people it was created to support. Participants risk being reduced to budget liabilities rather than recognised as individuals with rights, aspirations, and lives of equal value. My adult daughter currently accesses community supports that enable her to participate in ordinary activities that any other 20-year-old would undertake — attending appointments, accessing the community, developing independence, and maintaining social connection. Importantly, she is able to do this without relying entirely on her mother, in a safe and supportive environment that promotes autonomy and dignity. Without this funding, that independence disappears. She would become entirely reliant on me to take her everywhere she needs or wants go, well beyond what should reasonably be expected of informal supports. This would

not only be inappropriate and unsustainable but profoundly demeaning for a young adult striving for independence. It would rob her of autonomy, damage her mental health, and reinforce the harmful belief that she is a burden rather than a valued member of society.

That is not reform. It is abandonment.

Cap any support, for any group of participants, at any time

The Minister will be granted extraordinary powers to determine, by legislative instrument:

• The maximum amount of funding that can be allocated for any support or
  

  category of supports;

• The maximum intensity, frequency, and duration of supports;
  

• The maximum worker-to-participant ratios for specific supports or classes of
  

  support.

These caps may be applied broadly across the entire Scheme or selectively to targeted groups of participants. While the Government states these limits will be informed by “published, peer-reviewed evidence” regarding what is considered “appropriate and beneficial,” the underlying purpose of these reforms is clear: to constrain NDIS expenditure by imposing hard funding limits, regardless of the actual needs of participants. This represents a profound and dangerous shift away from individualized support and toward a rationed, one-size-fits-all system. Under these changes, participants may receive less support than independent professionals, therapists, specialists, and functional assessments have already determined they require. In effect, financial caps will override clinical evidence and lived reality. The question will no longer be: “What does this person need to live safely and meaningfully?” but rather: “What is the Government willing to pay?”

That distinction matters.

Because once arbitrary limits are imposed, disability support ceases to be based on human need and becomes dictated by budgetary tolerance. This will disproportionately harm participants with complex disabilities, high support needs, and significant assistive technology requirements. Reports, assessments, and equipment prescriptions are not simple administrative tasks. They are highly detailed, time-intensive documents requiring specialist expertise and many hours of professional

work.

Yet under capped funding arrangements, therapists and clinicians will increasingly be forced to spend limited hours completing mandatory paperwork and compliance requirements rather than delivering the therapy and interventions participants actually need.

Participants with complex equipment needs will be particularly disadvantaged. The more complex the disability, the more documentation is required to justify supports, creating a system where those with the highest needs are punished simply for existing within a bureaucratic framework that demands endless proof of disability.

The burden will once again be shifted onto families.

Families will be expected to absorb the gap between what participants genuinely need and what the Scheme is prepared to fund — financially, emotionally, physically, and practically. Parents and carers already stretched beyond capacity will be forced to fill the shortfall created by government-imposed caps, often at enormous personal cost.

Most alarmingly, these powers will sit almost entirely with the Minister of the day.

There will be no meaningful legislative oversight. No independent safeguard. No requirement to genuinely consider individual participant circumstances. No avenue for participants to challenge decisions that may fundamentally impact their safety, independence, and quality of life. One person will effectively have the authority to determine the value of a disabled person’s support needs — deciding what level of care, therapy, supervision, independence, and participation in society is considered financially acceptable.

That is an extraordinary concentration of power.

And it sets an extremely dangerous precedent: that the lives, dignity, autonomy, and opportunities of people with disability can be reduced to a financial equation.

People with disability are not line items in a budget. They are human beings entitled to live safe, meaningful, connected, and dignified lives. Any reform that prioritizes cost containment over human need fundamentally undermines the purpose and integrity of the NDIS itself.

The Minister can set maximum dollar amount for support

The proposed Bill grants the Minister the power to unilaterally set maximum prices for supports across the NDIS. These prices may vary depending on the type of support, provider, or participant category. This is a significant and deeply concerning departure from

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the recommendation of the NDIS Review, which proposed that pricing should instead be determined independently by the Independent Health and Aged Care Pricing Authority — not controlled by a government minister.

Concentrating this level of power in the hands of a single Minister removes independence, weakens accountability, and creates enormous risk for participants.

Equally alarming is the complete lack of transparency built into these proposed changes.

   Participants’ plans will no longer clearly specify how many hours of support they are

funded for. Funding calculations, pricing structures, and support caps will effectively be concealed within internal documents and administrative systems that are not publicly accessible. Participants will be expected to navigate an increasingly complex system without being given the basic information required to understand what supports they can access, what those supports cost, or how quickly their funding is being depleted.

   This creates a system where people with disability are expected to manage invisible

budgets with hidden rules.

  The risk of participants unknowingly overspending their funding is not hypothetical

— it is inevitable. Participants and families could exhaust funding without warning, not because supports were excessive or unreasonable, but because critical pricing information and funding limits were deliberately withheld from them.

That is not transparency. That is not informed choice and control. That is not participant empowerment.

      It is a system designed in a way that shifts risk and responsibility onto disabled

people while simultaneously withholding the information required to make informed decisions. The lack of public disclosure around dollar amounts and pricing caps fundamentally undermines one of the core principles the NDIS was founded upon: choice and control. Participants cannot exercise genuine choice if they are denied access to the information necessary to make decisions about their own supports. Families cannot effectively budget or plan. Providers cannot operate with certainty. Participants will be forced to make critical decisions blindly, while the Government retains all the information and all the power. For participants with complex disabilities, communication impairments, intellectual disabilities, psychosocial disabilities, or limited support networks, these risks become even greater. The very people the Scheme was created to protect will be the most

Vulnerable System

The result is a system that becomes increasingly opaque, restrictive, and adversarial — one where disabled people are expected to carry the consequences of hidden decisions made behind closed doors. The NDIS was created to empower people with disability, not to trap them within a system lacking transparency, accountability, and fairness. These proposed changes move the Scheme further away from participant-centred support and closer to a cost-containment model where financial control is prioritised over human need.

Whole Of Person Approach

The proposed Bill seeks to insert a single word into the legislation — “directly.” While this may appear minor, the implications are profound and potentially devastating for people with disability. Under this change, supports will only be funded if the need is considered to arise “directly” from a participant’s eligible impairment. This new test will fundamentally redefine what participants are allowed to access under the NDIS and will become the basis upon which supports are approved or denied. This represents a dangerous shift toward a highly medicalised and reductionist approach to disability. People with disability are not collections of isolated diagnoses that can be neatly separated into categories for administrative convenience. Human beings do not function in disconnected parts. Disabilities, particularly complex and neurological disabilities, are deeply interconnected, overlapping, and cumulative in their impact. The introduction of a “directly arising” test creates an artificial and harmful distinction between conditions, impairments, symptoms, and functional impacts that, in reality, cannot be separated.Many disabilities involve multiple co-morbidities, secondary conditions, and interacting impairments. Yet under these proposed changes, participants risk only receiving support for the narrow aspects of their disability that bureaucrats determine meet the qualifying criteria, while other equally disabling impacts may be excluded.This means participants will no longer be viewed or supported as whole people.Instead, they risk being reduced to diagnostic categories and technical interpretations about which aspects of their disability are considered sufficiently “direct” to deserve assistance.

**That approach is not only clinically flawed — it is fundamentally dehumanising.

Both of my daughters live with multiple rare, complex neurological conditions. Their disabilities overlap and interact in ways that profoundly affect every aspect of their functional capacity, independence, communication, safety, and daily life. It is impossible — and medically nonsensical — to attempt to dissect which specific limitation belongs to which diagnosis or determine whether one impairment arises “directly” versus indirectly from another.

The end result is the same: profound disability and significant support needs.

The proposed legislation ignores this reality entirely.

It also raises serious concerns about who will be making these determinations and whether they are remotely qualified to do so.

Who decides what “directly arising” means in practice?

Will decision-makers possess detailed clinical knowledge of rare disabilities, eurological conditions, genetic syndromes, psychosocial disabilities, intellectual disabilities, and the countless ways impairments interact across a person’s life? Will they understand how fatigue, cognitive impairment, behavioural impacts, sensory needs, mental health, communication barriers, physical limitations, trauma, and medical complexity intersect? Or will deeply complex human realities be reduced to simplistic administrative interpretations made by people with no meaningful understanding of the participant’s lived experience?

Because that is the real danger of this legislation.

It creates a framework where supports can be denied not because a person does not need them, but because someone decides the connection to the participant’s qualifying impairment is not “direct enough.” This will inevitably lead to arbitrary decision-making, inconsistent outcomes, increased disputes, and enormous harm to participants with complex disabilities. Most concerning of all, this change shifts the Scheme even further away from its original purpose: supporting people with disability to live ordinary, meaningful, and dignified lives. Instead, participants will be forced to continually justify, defend, and medically prove every aspect of their existence in order to access basic supports — all while**

Navigating a system increasingly designed to restrict access rather than respond to genuine need.

Plans will be auto renewed

Participant plans will be automatically renewed, and any unspent funding will be forfeited. While this may appear administratively efficient, the reality is deeply concerning and potentially devastating for many participants.

These automatic renewals fail to account for the complexity and unpredictability of disability.

They make no distinction between ordinary underspending and legitimate delays associated with high-cost items such as assistive technology, specialised equipment, or home modifications — processes that routinely take months due to assessments, quotes, approvals, supplier delays, building requirements, and installation timeframes. Participants who have acted responsibly and are simply navigating complex systems risk losing critical funding through no fault of their own.

This is particularly harmful for participants with significant physical disabilities, complex medical needs, or extensive assistive technology requirements, who already face substantial delays in accessing essential supports.

Even more alarming is the fact that renewed plans may occur without any meaningful consultation with the participant at all.

Under this model, a participant’s plan could simply roll over for another 12 months regardless of whether their circumstances, functional capacity, health, living situation, risks, therapies, informal supports, or support needs have changed.

This fundamentally undermines the principles of participant-centred planning and individualized support that the NDIS was supposedly built upon.

Disability is not static.

Children grow and develop. Conditions deteriorate. Medical needs change. Informal supports break down. Participants experience mental health crises, behavioural changes, hospitalisations, transitions into adulthood, changes in education, employment, housing, and family circumstances. Yet under these proposed changes, participants may be trapped within outdated plans that no longer reflect their reality. For children in particular, this approach is profoundly inappropriate.

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A child’s developmental, therapeutic, educational, behavioural, and functional needs can change dramatically within a 12-month period. Automatically renewing plans without proper reassessment risks leaving children without critical supports during the most important developmental years of their lives.

The same applies to participants with multiple, chronic, degenerative, fluctuating, or complex disabilities, whose needs cannot simply be “rolled over” through an administrative process designed for convenience rather than care.

Most concerning of all is that the avenues for fixing these problems are also being stripped away.

Participants will only be able to access reassessments or plan variations in limited and exceptional circumstances. In other words, participants may be locked into inadequate plans while simultaneously losing the ability to meaningfully challenge or change them.

This creates an extraordinarily dangerous imbalance of power.

Automatic plan renewals are also proposed to be non-reviewable decisions, making participants may have no effective right to appeal or seek independent review of a renewed plan that fails to meet their needs.

This raises critical questions:

• Where is the participant in participant-centred planning?
• Where is the consultation?
• Where is the choice and control?
• Where is the individualized consideration the NDIS promised? Participants are being excluded from decisions about supports specifically designed for their own lives.

Even more troubling is the lack of clarity surrounding the Minister’s powers to alter renewed plans. It remains unclear what changes may be made to a participant’s supports, funding, categories, or budgets during the renewal process, and whether participants will have any genuine right to challenge those alterations.

A renewed plan that contains reduced funding, altered supports, or changed conditions should absolutely be treated as a new decision subject to full review rights. Anything less undermines procedural fairness and strips participants of basic legal protections.

At its core, this proposal shifts the NDIS further away from individualized support and toward an automated administrative system where efficiency and cost containment take priority over human need, participant voice, and lived experience.

Changing Principles

  People with disability are not files to be automatically processed once a year. Their

lives, needs, and circumstances are dynamic, complex, and deeply personal. Any system that removes participants from decisions about their own supports fundamentally fails the very people the NDIS was created to serve.

Changing Principles

  The proposed Bill fundamentally redefines the meaning of "reasonable and

necessary“ supports — a concept that has always been central to the purpose and integrity of the NDIS.

These are not minor administrative amendments.

  The Bill removes existing sections entirely, replaces core provisions, inserts new

legislative tests, and rewrites the very objects and principles underpinning the Scheme itself. In doing so, it radically alters the philosophical foundation of the NDIS: shifting it away from individualized support based on human need and toward a system primarily governed by financial constraint. Most significantly, the Bill replaces the long-standing reference to “reasonable and necessary supports” with “NDIS supports… consistent with the financial sustainability of the Scheme.”

That change is profound.

  For the first time, the legislation explicitly elevates the financial sustainability of the

Scheme as a central consideration in determining what disabled people are entitled to receive.

This fundamentally changes the purpose of participant planning.

  Under the current framework, supports are intended to reflect the participant’s

individual circumstances, functional capacity, goals, lived experience, and genuine support needs. The focus is on the person.

  Under the proposed framework, supports will increasingly be shaped by what the

Government considers financially sustainable. The focus shifts from: What does this person need to live safely, independently, and with dignity? to: What level of support can the Scheme afford to provide?

That is not a subtle policy adjustment.

It is a complete reframing of disability support in Australia.

These changes strip participants of genuine choice, control, and meaningful involvement in decisions about their own lives. Participant goals become secondary to cost containment. Individualized planning becomes subordinate to budget management. The practical effect is deeply dehumanising. People with disability risk being reduced from individuals with unique lives, aspirations, strengths, challenges, and support needs into financial liabilities to be managed within expenditure targets.

The proposed amendments further entrench this shift by introducing principles requiring the CEO to prioritise Scheme sustainability when making planning decisions, including by:

• Funding only supports that are deemed to arise “directly” from impairments meeting access criteria;
• Emphasising the role of informal and community supports;
• Reinforcing that participants are responsible for ordinary day-to-day living costs;
• Ensuring funding is distributed “fairly and consistently” across participants with supposedly similar needs.

On the surface, these principles may appear reasonable. In reality, they create the framework for a far more restrictive and standardised system where individual complexity is overridden by generalized assumptions, funding caps, and administrative interpretation.

The Government has openly justified these changes by arguing that courts and tribunals have interpreted the existing legislation too favourably toward participants and prospective participants. It claims those decisions have “expanded” the Scheme, increased costs, created inconsistencies, and placed pressure on long-term sustainability.

That justification is deeply troubling.

What the Government describes as an “unintended expansion” is, in many cases, simply disabled people successfully asserting their rights to supports they genuinely need in order to live safely and participate in society.

The implication is clear: the problem is not that participants’ needs are illegitimate — the problem is that too many participants have succeeded in proving them.

My daughters are not line items in a government budget.

Changes to Requirement for an Impairment to Be ‘Permanent’

The proposed Bill introduces deeply concerning provisions that could prevent people with disability from accessing the NDIS if there are treatments available that may improve or reduce the impact of their impairment. Most alarmingly, the legislation introduces a requirement that a person must have tried “all appropriate treatment” before they can access the Scheme.

Under the Bill, “appropriate treatment” is broadly defined as treatment that:

• Is evidence-based;
• Can reasonably be expected to materially improve, reverse, or alleviate the impact of an impairment;

• Is regularly undertaken in Australia.

At first glance, this may appear reasonable. In reality, these provisions are extraordinarily broad, medically complex, and dangerously open to interpretation.

The practical consequences could be devastating.

These changes create a significant barrier to accessing essential disability supports and fundamentally alter the purpose of the NDIS. Rather than recognising disability based on a person’s functional capacity and lived experience, access may instead become conditional upon whether a participant has pursued every treatment option deemed “appropriate” by decision-makers. This shifts the Scheme away from supporting disabled people and toward policing their medical decisions. The requirement to undertake “all appropriate treatment” fails to recognise an essential reality: treatment does not equal cure. Many treatments may marginally improve symptoms while a person still remains profoundly disabled and substantially impaired in their daily functioning. Others may only slow deterioration rather than restore functional capacity. Some treatments take years to show limited benefit. Others carry serious risks, painful side effects, financial costs, emotional trauma, or reduced quality of life. Yet under these proposed changes, people may be denied access to critical supports simply because they have not exhausted every possible medical intervention. This is particularly alarming for people with progressive, degenerative, neurological, genetic, psychosocial, or complex chronic conditions, where treatment may only modestly delay decline rather than meaningfully restore independence or function. It also creates enormous uncertainty around who determines what constitutes “appropriate treatment” and how those decisions will be made. Will decision-makers have specialist medical expertise? Will they understand rare disabilities and complex neurological conditions? Will they appreciate the risks, burdens, side effects, and long-term consequences associated with particular treatments? Or will participants be subjected to rigid bureaucratic interpretations about what they “should” be willing to endure in order to qualify for support?

Most disturbingly, these provisions undermine bodily autonomy and the fundamental right of people with disability to make informed decisions about their own healthcare. People may refuse treatment for many legitimate reasons:

• because the risks outweigh the benefits,
• because the side effects are intolerable,

• because the treatment is invasive or traumatic,
• because it conflicts with their personal values,
• or because it simply is not appropriate for their individual circumstances.

Under this legislation, refusing treatment could effectively become grounds for denying access to disability support.

That is an extraordinary and dangerous precedent.

No person should be forced into medical treatment — or coerced into accepting risky procedures — simply to prove they are “disabled enough” to deserve support.

The fact that these requirements will also apply to early intervention is particularly concerning.

Early intervention exists specifically to provide support sooner, reduce long-term impacts, build capacity, and avoid greater support needs later in life. Requiring participants to first exhaust all possible treatment options before accessing early supports completely undermines the purpose of early intervention itself. Instead of intervening early, the system risks delaying support until impairment, family stress, and functional decline become even more severe and costly. These changes will inevitably restrict access to the NDIS and disproportionately harm people with the most complex conditions. If such provisions are introduced at all, the wording must be extraordinarily narrow, carefully defined, and subject to strong safeguards to prevent harmful, unfair, and unintended outcomes. My own daughters live with multiple rare and complex neurological conditions. One of my daughters experiences refractory epilepsy — a severe form of epilepsy that does not respond predictably to treatment. Under these proposed laws, would she be required to trial every available medication, even those carrying debilitating side effects that could significantly worsen her quality of life and functional capacity? Would she be expected to undergo invasive procedures or surgery, despite there being no guarantee of meaningful benefit, simply because others with different clinical presentations have pursued those options? And if we refused treatments that we believed were unsafe, harmful, or medically inappropriate for her specific circumstances — would she then be denied access to the supports she needs to live safely and with dignity?

That is the impossible position these reforms place families in.

Parents and carers will be forced to make medical decisions under the shadow of losing essential disability support.

Instead of making choices based solely on what is safe, ethical, and clinically appropriate for their child, families may feel pressured into pursuing treatments out of fear that refusing will jeopardise access to the NDIS altogether.

That is not informed choice. That is coercion through conditional support.

No family should ever be forced to choose between protecting their child’s wellbeing and securing the supports they need to survive. There is also a serious and deeply troubling question about what happens when treatment technically exists, but is not realistically accessible to the person.

• What happens if the treatment is prohibitively expensive?
• What happens if it is only available privately?
• What happens if there are years-long waiting lists?
• What happens if the participant lives in a rural or regional area with little or no access to specialists?
• What happens if the treatment requires extensive travel, relocation, or financial resources that families simply do not have?

Would those individuals then be denied access to the NDIS because they were unable — not unwilling — to access treatment? If so, this creates a profoundly inequitable system where access to disability support becomes dependent not only on disability itself, but on wealth, postcode, gography, and privilege. People with disability should not be penalised because they cannot afford expensive treatments or because they happen to live outside metropolitan areas. This proposal risks creating a two-tiered system: one for those with financial means and access to specialised healthcare, and another for those who are disadvantaged by cost, location, service shortages, or systemic barriers.

The consequences of that would be devastating. Participants could be locked out of essential disability supports, not because they do not meet functional criteria, but because they lacked the financial capacity or geographical access to pursue treatments deemed “appropriate” by the system.

That is not fairness.

That is structural discrimination.

It would disproportionately harm vulnerable families, low-income households, regional and remote communities, and participants with rare or complex conditions requiring highly specialized treatment options that are often difficult or impossible to access. Access to the NDS should never depend on whether a family can afford private healthcare, travel interstate for treatment, relocate closer to specialists, or absorb enormous out-of-pocket expenses simply to prove they deserve support. Disability support is a fundamental necessity — not a privilege reserved for those with the financial means to navigate an inaccessible healthcare system.

Test for functional capacity

The proposed Bill seeks to legally redefine “functional capacity” and, more significantly, grants the Government the power — with agreement from states and territories — to create NDIS Rules that determine who can access the Scheme by establishing:

• Criteria for assessing a person’s functional capacity; and
• Standardised tools used to measure that capacity.

This represents one of the most significant and concerning shifts proposed within the legislation.

In practice, these changes appear designed to introduce a standardised assessment tool that will determine whether a person is considered sufficiently disabled to qualify for access to the NDIS. The is a fundamental departure from the current system, where access decisions are informed by comprehensive evidence from treating professionals — doctors, specialists, psychologists, therapists, and allied health practitioners who know the participant, understand their disability, and have firsthand knowledge of how their impairments impact daily functioning and quality of life. Under the proposed model, the expertise of treating professionals risks being replaced by a standardised assessment framework designed to categorise people through rigid criteria and scoring systems. Even more alarming is the fact that the NDIA will also use these tools to reassess existing participants and remove them from the Scheme if they no longer meet the prescribed threshold.

Concerns About Standardized Assessments in NDIS

This creates enormous fear and uncertainty for current participants and families.

People who have already established eligibility, built supports around their plans, and rely on the NDIS for their safety, independence, and daily functioning could suddenly face reassessment under a completely new system designed around standardisation rather than individual reality.

The fundamental flaw with standardised assessments is that disability cannot be meaningfully reduced to a universal checklist or “tick-box” exercise.

Disability is complex. It is nuanced. It is deeply individual.

No single assessment tool can adequately capture the full spectrum of disability, especially for people with rare, fluctuating, psychosocial, neurological, degenerative, tellectual, or multiple co-occurring conditions.

Standardised assessments inherently favour simplicity over complexity.

They are designed to measure what can easily be quantified, not what is necessarily most important. As a result, they risk overlooking the lived realities of people whose disabilities do not fit neatly within predetermined categories, scoring systems, or narrow functional descriptors.

Participants with complex presentations, masking behaviours, fluctuating capacity, trauma histories, communication barriers, cognitive fatigue, sensory needs, or intersecting disabilities are particularly vulnerable to being misunderstood, underestimated, or excluded altogether.

This approach strips power away from the professionals who actually know the participant and places it into the hands of an impersonal administrative process.

The people best placed to understand a participant’s disability are the clinicians and therapists who have worked with them over time, observed their functioning across environments, documented their needs, and witnessed firsthand the impact of their impairments on daily life.

Yet under these reforms, their expertise risks being secondary to a standardised assessment tool created by bureaucratic systems that may never truly understand the participant as a whole person.

That is deeply concerning.

Most troubling of all is the complete lack of transparency surrounding these proposed assessment tools.

There has been no meaningful information provided about:

• What the assessment tool will actually look like;
• Who will design and validate it;
• Whether it will be evidence-based and independently reviewed;
• How cultural, linguistic, developmental, psychosocial, neurological, or complex disabilities will be appropriately assessed;
• Whether participants, families, disability advocates, clinicians, or people with lived experience will be genuinely involved in co-design;
• Or what safeguards will exist to prevent people from being unfairly excluded from the Scheme.

Participants are effectively being asked to place their futures, supports, and lives into a system that has not been properly explained, scrutinised, or transparently developed.

That is unacceptable.

A poorly designed standardised assessment tool has the potential to exclude vulnerable people from essential supports, reduce disability to arbitrary scoring systems, and create widespread inequity across the Scheme. Most concerningly, it shifts the NDIS even further away from individualized support and toward a system focused on gatekeeping, cost control, and administrative efficiency.

People with disability are not statistics to be measured against rigid benchmarks. They are human beings with unique lives, challenges, strengths, goals, and support needs that cannot be accurately captured through a one-size-fits-all assessment process.

Any system that prioritises standardisation over genuine understanding risks failing the very people the NDIS was created to support.

Conclusion

Where is the equity in any of this? Where is the fairness? Where are the human rights of people with disability within these proposed reforms?

What Is Being Proposed

What is being proposed fundamentally dismantles the principles upon which the NDIS was created — choice, control, dignity, individualised support, and the right of people with disability to participate fully and equally in society.

These reforms do not strengthen the Scheme. They fundamentally weaken it.

They shift the focus away from human need and toward financial containment. They reduce people with disability from individuals with rights, aspirations, and inherent worth into budgetary considerations to be managed and restricted.

The language throughout these reforms is deeply revealing. “Sustainability” has become the overriding priority, while the voices, lived experiences, and wellbeing of participants are increasingly treated as secondary.

Disabled people are not disposable. Their lives do not carry a price tag. Their worth cannot and should not be measured against government expenditure targets.

Yet this Bill repeatedly places financial sustainability above the safety, dignity, autonomy, and human rights of people with disability.

It strips away genuine choice and control. It removes safeguards and review rights. It centralises extraordinary powers within government. It reduces transparency. It increases barriers to support. It places participants under constant scrutiny and suspicion. And it shifts an unbearable burden back onto families and carers who are already carrying more than most people could ever imagine.

Families and informal supports are not an unlimited resource. Parents, carers, siblings, and loved ones already sacrifice careers, financial security, physical health, mental wellbeing, relationships, and their own futures in order to support disabled family members within a system that is already extraordinarily difficult to navigate — even when appropriate supports are in place.

These reforms will push many beyond breaking point.

The Consequences

The consequences will not simply be administrative. They will be human.

There will be increased isolation. Increased mental health deterioration. Increased family breakdown. Increased carer burnout. Increased crisis presentations. Increased neglect. Increased trauma. And for some people, the consequences will be fatal.

That is not alarmism. That is the predictable outcome of systematically reducing supports, removing safeguards, and placing vulnerable people into increasingly restrictive systems.

Most disturbing of all is the extraordinary concentration of power these reforms place into the hands of the Government of the day — and specifically, the NDIS Minister.

These changes grant sweeping powers to alter supports, funding structures, pricing, access requirements, assessment processes, and participant entitlements with limited oversight and reduced accountability.

Checks and balances are being eroded. Independent review mechanisms are being weakened. Participant protections are being stripped away.

That should concern every Australian.

Because disability does not discriminate.

It does not care about age, income, profession, education, status, or circumstance. It can happen at birth, through illness, through accident, through trauma, or in an instant that changes a life forever.

Any Australian could one day rely on this Scheme. Any family could find themselves needing the protections that are now being dismantled.

My daughters deserve better than this.

They Deserve Recognition

They deserve to be recognised as human beings with value, dignity, rights, potential, and individuality — not as financial burdens to be minimised.

And every person with disability in this country deserves a system that sees them as worthy of support, inclusion, autonomy, and respect.

The true measure of a society is how it treats its most vulnerable people.

These reforms risk taking Australia backwards — toward a time when people with disability were hidden away, excluded from community life, denied autonomy, and viewed as problems to be managed rather than citizens with equal rights.

We should be moving toward greater inclusion, compassion, equity, and humanity.

Not away from it.

I ask every decision-maker supporting these reforms to consider these simple questions:

• How would you feel if this were your child?
• Your sibling?
• Your partner?
• Your parent?
• Or you?

Thank you for taking the time to read my submission,

Yours Sincerely