SUBMISSION TO THE SENATE COMMUNITY AFFAIRS LEGISLATION COMMITTEE

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

NDIS Participant

Phone:

31 May 2026

TABLE OF CONTENTS

• 1. Executive Summary ………………………………………………………………………… 2
• 2. About Me and Why This Bill Matters ………………………………………………….. 5
• 3. Human Rights, Autonomy and the Purpose of the NDIS ………………………. 7
• 4. Consultation, Co-Design and Democratic Participation ………………………… 10
• 5. Functional Capacity Assessments (Part 1) …………………………………………. 12
• 6. Access Eligibility and Permanence Requirements (Part 8) ……………………. 15
• 7. Supports Arising Directly from Eligible Impairments (Part 3) …………………. 18
• 8. Ministerial Determinations & Reductions to Support Categories (Part 4) …. 20
• 9. Plan End Dates, Funding Flexibility & Suspension Powers (Parts 5 & 7) …. 22
• 10. Interaction with Other Service Systems and Cost Shifting (Part 9) ………….. 24
• 11. Compliance, Fraud and Enforcement …………………………………………………. 26
• 12. Recommendations and Safeguards ……………………………………………………. 28
• 13. Final Position and Closing Statement …………………………………………………. 31

APPENDICES

Appendix A – Personal Impact Statement …………………………………………………………….. 34 Appendix B – Understanding Hypermobile Ehlers-Danlos Syndrome ……………………………… 39 Appendix 3 – Summary of Key Issues And Recommendations…………………………………. 44

Submission prepared in response to the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026.

EXECUTIVE SUMMARY

I make this submission as both an NDIS participant directly affected by the proposed reforms and as a disabled Australian mother and journalist living with severe, permanent, and complex disability.

I support the objective of ensuring the long-term sustainability, integrity, and effectiveness of the National Disability Insurance Scheme (NDIS). A sustainable Scheme is essential for current and future participants, and there is legitimate public interest in ensuring public resources are used appropriately and effectively.

However, I am deeply concerned that the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 risks creating unintended structural exclusion for people with rare, complex, fluctuating, degenerative, and multi-system disabilities.

The Bill introduces substantial reforms relating to:

• Functional capacity assessments;
• Access eligibility requirements;
• Permanence criteria;
• Support eligibility;
• Funding structures;
• Plan end dates and reassessment mechanisms;
• Plan suspension powers;
• Compliance and enforcement measures; and
• Administrative governance arrangements.

While each reform may appear administratively rational in isolation, their cumulative effect risks shifting the Scheme away from a person-centred model grounded in functional participation and toward a more standardised administrative model focused on categorisation, reassessment, eligibility control, and expenditure management.

My concern is not whether the NDIS should be reformed, but how that reform is undertaken.

The critical question is whether the proposed changes strengthen the Scheme while preserving its foundational purpose: providing the supports necessary for Australians with permanent and significant disability to participate fully in family, community, and economic life on an equal basis with others.

Page 3

In particular, I am concerned about provisions that:

• Introduce standardised functional capacity assessments that may fail to adequately capture fluctuating, degenerative and invisible disabilities;

• Require support needs to arise directly from specific impairments used to gain Scheme access, creating challenges for people with complex multi-system conditions;

• Expand powers to reduce funding categories through Ministerial determinations;

• Introduce legislated plan end dates and restrictions on the carry-over of unused funding;

• Create new plan suspension mechanisms that may disproportionately affect participants experiencing periods of illness, hospitalisation, or reduced capacity;

• Tighten permanence requirements through treatment-based eligibility criteria; and

• Increase reliance on administrative processes that may not reflect the realities of lifelong disability.

The success of the NDIS should not be measured solely by reductions in expenditure growth.

It should also be measured by whether disabled Australians remain able to:

• Live safely in their communities;

• Avoid unnecessary hospitalisation;

• Maintain family relationships;

• Participate in society;

• Exercise autonomy and choice; and

• Live with dignity and purpose.

I live with severe Hypermobile Ehlers-Danlos Syndrome (hEDS), a rare and progressive genetic connective tissue disorder causing recurrent joint dislocations, spinal degeneration, chronic pain, neurological complications, mobility impairment, and significant functional limitation.

I am also the mother of a young child.

The NDIS enables me to live safely in my community, participate in family life, fulfil my role as a parent, and avoid unnecessary reliance on hospitals and crisis services.

Page 4

As a participant living with a complex, fluctuating, and multi-system disability, I am concerned that several provisions within this Bill may disproportionately affect people whose impairments do not fit neatly within standardised assessment frameworks or narrowly defined categories of support.

My experience demonstrates both the importance of sustainable disability support and the potential consequences when administrative systems fail to adequately reflect the realities of complex disability.

The NDIS did not give me luxury. It gave my son his mother back.

I respectfully submit that securing the future of the NDIS should not be understood solely as controlling expenditure growth.

It should also mean protecting the ability of Australians with disability to remain active members of their families and communities.

The true test of this Bill is not whether it produces administrative efficiency.

It is whether Australians with permanent and significant disability remain able to live, parent, participate, and belong.

This submission supports reform that improves integrity and sustainability while preserving the foundational principle upon which the NDIS was built:

Disability supports should be determined by functional need and meaningful participation, not by administrative convenience or increasingly narrow categorisation.

2. ABOUT ME AND WHY THIS BILL MATTERS

I am a 32-year-old mother living with severe Hypermobile Ehlers-Danlos Syndrome (hEDS), a rare genetic connective tissue disorder that causes recurrent joint dislocations, spinal degeneration, chronic pain, neurological complications, severe fatigue, mobility impairment, and progressive functional decline.

I also live with Postural Orthostatic Tachycardia Syndrome (POTS), have a history of Stroke and seizure with related neurological complications, and experience chronic pelvic pain associated with suspected endometriosis.

My condition is lifelong, incurable, and highly unpredictable.

My skeletal instability is so severe that it causes recurrent daily dislocations affecting multiple joints, including my shoulders, hips, kneecaps, and ribs. These events occur so frequently that, out of sheer necessity, I have had to learn to relocate many of these joints myself. This is not an occasional medical event but a routine part of everyday life and a constant reminder of the progressive nature of my condition.​

Even ordinary activities such as dressing, showering, preparing meals, carrying groceries, or interacting with my child can trigger dislocations, acute pain, and further injury - with each further degenerating and weakening my condition.

On some days I can participate in daily activities with support. On others, I struggle to shower, prepare food, leave the house safely, or complete basic tasks without significant risk of injury.

I am also the mother of a young child.

Before my disability progressed, I worked as a journalist, travelled extensively, surfed, skied, camped, and lived a full and active life. Following the birth of my son, my condition deteriorated rapidly. At what should have been one of the happiest periods of my life, I found myself increasingly isolated as my body progressively failed.

I could not reliably lift my son. I could not safely absorb the sudden movements that are part of ordinary parenting. Activities many parents take for granted—running through a park, carrying a tired child, taking them to the beach, or simply catching them when they fall—often carried significant risk of injury and preventable deterioration.

As my son grew, all he wanted was for his mother to join in.

More than anything, I wanted to be able to say yes.

Instead, I spent much of his early childhood bedbound and terrified - managing repeated dislocations, surgeries, hospital admissions, and the consequences of a disease that was steadily taking me further away from the life I wanted to live.

Page 6

Before receiving NDIS support, there were periods where I went without meals because I could not safely prepare food. I went without showers because personal care had become physically overwhelming. I became increasingly isolated, while my husband attempted to balance being sole income earner, parent, and carer, often travelling internationally for work while carrying responsibilities that would ordinarily be shared between two healthy adults.

The strain on our family was indescribably immense.

But the NDIS changed that trajectory in July 2025.

Through assistance with daily living, domestic support, community participation, mobility support, and practical assistance that enables me to continue participating in family life, I have experienced fewer injuries, fewer hospital presentations, greater independence, and significantly improved quality of life.

The NDIS did not cure my disability.

It gave me the support necessary to live safely with it.

Most importantly, it gave my son his mother back.

Today, after less than one year of NDIS support, I am able to participate in family life in ways that were previously impossible. I can be present for the moments that make up a childhood—trips to the park, afternoons at the beach, family outings, medical appointments, and everyday life.

Support workers help me avoid tasks that would otherwise cause injury and preventable deterioration, allowing me to reduce preventable harm, slow further physical deterioration, and conserve enough energy to be a mother rather than merely a patient.

This experience is directly relevant to the reforms proposed by this Bill.

My disability does not fit neatly within administrative categories. Pain affects mobility. Mobility affects parenting. Fatigue affects self-care. Instability affects community participation.

Every aspect of my disability interacts with every other aspect.

That is why reforms relating to functional assessments, support eligibility, permanence requirements, reassessments, and participation supports are not abstract policy questions for people like me.

They have the potential to determine whether disabled Australians remain able to participate in family life, maintain independence, and continue living safely within their communities.

Page 7

Human Rights, Autonomy, And The Purpose Of The NDIS

The National Disability Insurance Scheme is often discussed in terms of funding, expenditure, and sustainability.

While these considerations are important, they should not obscure the purpose for which the Scheme was created.

The NDIS is not merely a funding mechanism.

It is part of the social infrastructure through which disabled Australians exercise autonomy, maintain family relationships, participate in their communities, and live with dignity and independence.

For many participants, NDIS supports are what make the difference between community participation and isolation, independence and dependence, stability and crisis.

In my own case, NDIS supports have enabled me to remain an active parent, reduce reliance on hospital services, maintain my safety at home, and participate more fully in family and community life despite living with severe and progressive disability.

The proposed reforms should therefore be considered not only through the lens of administrative efficiency and financial sustainability, but also through their impact on the lives of the people the Scheme exists to support.

Australia is a signatory to the United Nations Convention on the Rights of Persons With Disabilities (CRPD).

Several principles within the Convention are directly relevant to the reforms proposed by this Bill.

Article 19 recognises the right of people with disability to live independently and participate fully in the community.

Article 3 recognises the importance of individual autonomy, dignity, and freedom to make choices.

Article 4(3) requires governments to closely consult with and actively involve people with disability in decisions affecting them.

These obligations extend beyond the provision of services.

They also require governments to promote respect for the dignity, worth, and equal rights of people with disability, and to challenge stereotypes, prejudice, and discrimination.

The way governments speak about disability matters.

Page 8

Legislation does not operate in a vacuum. Public understanding of disability is influenced by political rhetoric, policy priorities, and the messages conveyed through legislative reform.

As someone who worked in the media, I have been troubled by the extent to which public discussion about the NDIS has become dominated by expenditure figures and isolated examples of misuse, while the everyday realities of disability, caregiving, and participation are often overlooked.

In recent years, public debate about the NDIS has increasingly focused on sustainability, expenditure growth, and fraud. While these are legitimate policy considerations, there is a risk that discussions framed primarily around cost can unintentionally contribute to a perception that disabled people are an economic burden rather than equal citizens entitled to participate fully in Australian society.

As a former journalist, I have been deeply concerned by the way disability is increasingly portrayed in public discourse. Media reporting frequently highlights large spending figures or isolated examples of misuse without adequately distinguishing between provider misconduct, administrative failures, and the legitimate support needs of participants. This can create a distorted public perception of the Scheme and of the people who rely upon it.

The question before Parliament is not whether public funds should be spent responsibly. They should.

The question is whether efforts to control expenditure remain consistent with Australia’s commitment to equality, inclusion, and the rights of people with disability.

The question is whether Australia remains committed to the principle that disabled people have the same right as every other Australian to participate in family life, education, employment, community life, and civic life.

Legislation that affects disability support therefore carries significance beyond administrative arrangements. It communicates how society understands disability, whose participation is valued, and the extent to which Australia is willing to uphold the rights recognised under international law.

These principles are not abstract aspirations.

They reflect the understanding that disability support is not simply about meeting basic needs. It is about ensuring disabled people can participate in society on an equal basis with others.

This is particularly important when considering reforms that affect access to supports, assessment processes, planning arrangements, and community participation.

The success of the NDIS should not be measured solely by reductions in expenditure growth or administrative efficiency.

It should also be measured by whether disabled Australians remain able to:

Page 9

• Live safely in their communities;

• Participate in family life;

• Maintain meaningful social connections;

• Exercise autonomy and choice;

• Avoid unnecessary hospitalisation or institutionalisation; and

• Pursue lives of dignity and purpose.

A sustainable NDIS and a rights-based NDIS are not competing objectives.

In fact, they are mutually reinforcing.

Supports that prevent deterioration, reduce hospital admissions, maintain family stability, and enable community participation often reduce reliance on more expensive systems of care.

Protecting the long-term sustainability of the Scheme is therefore important.

However, sustainability should not be achieved through reforms that unintentionally reduce the Scheme’s ability to fulfil its core purpose: supporting Australians with permanent and significant disability to participate meaningfully in everyday life.

The future of the NDIS is not only about the future of a government program.

It is also about the place disabled Australians occupy within Australian society.

The central question before the Committee is not simply whether the Scheme becomes more administratively efficient.

It is whether, following reform, it continues to function effectively for the people whose lives depend upon it.

10

4. CONSULTATION, CO-DESIGN, AND DEMOCRATIC PARTICIPATION

The National Disability Insurance Scheme is one of the most significant social policy reforms in Australian history.

The changes proposed by the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 affect fundamental aspects of the Scheme, including access eligibility, functional assessment, support eligibility, planning arrangements, funding mechanisms, reassessment processes, and participant rights.

Given the breadth and significance of these reforms, meaningful consultation with people with disability is not merely desirable—it is essential.

People with disability are not passive recipients of disability policy.

They are experts in the lived reality of disability and in the practical operation of the systems designed to support them.

While the Government has undertaken consultation throughout the broader NDIS reform process, there remains significant concern within the disability community regarding the pace, complexity, and cumulative impact of the changes being implemented.

Many participants continue to experience uncertainty regarding how key reforms will operate in practice, particularly those relating to functional capacity assessments, support eligibility, planning frameworks, and reassessment processes.

This uncertainty is especially significant for participants with complex, fluctuating, degenerative, or multi-system disabilities, whose circumstances may not align neatly with standardised administrative frameworks.

The success of any reform depends not only on legislative design, but on implementation. Policies that appear coherent in principle can produce unintended consequences when applied to the realities of everyday life.

For this reason, people with disability must remain actively involved in the development, implementation, monitoring, and evaluation of NDIS reforms.

This is consistent not only with good public policy, but also with Australia’s obligations under Article 4(3) of the Convention on the Rights of Persons with Disabilities, which requires governments to closely consult with and actively involve people with disability in decisions affecting them.

Reform undertaken with disabled people is more likely to succeed than reform undertaken for disabled people.

Page 11

The Committee should therefore ensure that ongoing implementation of the Bill includes robust mechanisms for participant consultation, transparency, review, and continuous evaluation of real-world impacts.

This is particularly important where reforms introduce new assessment frameworks, planning mechanisms, eligibility criteria, or administrative powers that may have significant consequences for participants’ ability to access and maintain supports.

The long-term sustainability of the NDIS depends not only on financial stewardship, but also on maintaining the confidence and trust of the people whose lives depend upon it.

12

5. FUNCTIONAL CAPACITY ASSESSMENTS (PART 1)

One of the most significant reforms proposed by the Bill is the introduction of a legislated framework for assessing whether a person has substantially reduced functional capacity for the purposes of NDIS access and eligibility.

The objective of creating a more consistent and transparent assessment framework is understandable.

Consistency can improve fairness, reduce uncertainty, and help ensure that participants with similar levels of disability are treated equitably.

However, consistency or standardisation should not be confused with accuracy.

For many people with complex, fluctuating, or multi-system disabilities, functional capacity cannot be adequately captured through a standardised or snapshot assessment process.

This is particularly relevant for conditions such as Hypermobile Ehlers-Danlos Syndrome.

My disability is not static.

My level of functioning changes according to injury events, cumulative physical load, pain severity, neurological symptoms, fatigue, and environmental demands.

A task I may be physically capable of performing once may not be something I can perform repeatedly, safely, reliably, or without significant deterioration afterwards.

This distinction is critical.

The relevant question is not simply whether a person can perform a task.

The relevant question is whether they can perform that task:

• Safely;
• Reliably;
• Repeatedly;
• Within a reasonable time; and
• Without causing significant deterioration to their health or functioning.

Many disabilities are characterised by delayed consequences rather than immediate incapacity.

Page 13

A person may appear capable during an assessment while experiencing substantial pain, compensating through adaptive strategies, or knowingly exceeding their physical limitations in order to complete requested tasks.

The consequences may only become apparent hours or days later.

As an example, for people living with hEDS, this phenomenon is particularly common.

A brief assessment may not capture:

- Recurrent joint dislocations and subluxations;

- Post-exertional deterioration;

- Cumulative injury risk;

- Chronic fatigue;

- Fluctuating neurological symptoms;

- Structural degeneration over time;

- Potential for life-threatening complications

- The need to carefully ration physical activity throughout the day; or

- The long-term consequences of repeatedly exceeding physical limits.

There is therefore a risk that standardised assessment frameworks may systematically underestimate disability in participants whose impairments are variable, invisible, episodic, or difficult to observe within a limited assessment period.

This concern is not unique to hEDS.

Many neurological, autoimmune, chronic pain, and other complex conditions present similar challenges.

The Committee should carefully consider whether the proposed framework adequately accommodates participants whose disability is characterised by fluctuation, unpredictability, cumulative impairment, or delayed functional consequences.

In particular, assessment processes should recognise that functional capacity is not simply a measure of what a person can do on their best day, or in a controlled environment.

It must reflect what a person can do safely and sustainably in the context of everyday life.

The NDIS was established to respond to real-world disability, not theoretical capability.

Page 14

Assessment frameworks that fail to capture this distinction risk excluding participants whose needs are genuine, substantial, and ongoing, but whose disabilities do not fit neatly within standardised administrative measures.

I respectfully submit that implementation of the functional capacity framework should include explicit safeguards requiring assessors to consider:

• Fluctuating and episodic disability;
• Post-exertional symptom exacerbation;
• Cumulative injury risk;
• Safety and sustainability of activities;
• The reliability and repeatability of functional performance;
• The interaction of multiple impairments; and
• The practical realities of daily living outside a clinical assessment environment.

Without such safeguards, there is a significant risk that participants with complex disabilities may be assessed according to what they can occasionally achieve rather than what they can realistically sustain.

For people like me, that distinction is the difference between participation and exclusion.

6. ACCESS ELIGIBILITY AND PERMANENCE REQUIREMENTS (PART 8)

The Bill proposes changes to the assessment of permanent impairment, including consideration of whether all appropriate treatment has been undertaken, whether further treatment is likely to materially improve impairment, and whether the impairment is likely to be lifelong.

The objective of ensuring that the NDIS remains focused on permanent and significant disability is understandable.

However, the practical application of these provisions raises concerns for people living with complex, degenerative, genetic, and incurable conditions.

There is an important distinction between treatment, management, and cure.

Many disabilities can be managed to some extent.

That does not mean they cease to be permanent.

Nor does it mean that treatment will materially improve a person’s long-term functional capacity.

This distinction is particularly relevant for Hypermobile Ehlers-Danlos Syndrome. hEDS is a lifelong genetic connective tissue disorder.

There is no cure.

There is no treatment capable of restoring normal connective tissue function.

There is no intervention that can prevent the underlying disorder from existing.

Instead, treatment is typically directed toward managing symptoms, reducing complications, slowing deterioration, and preserving function for as long as possible.

Many people with hEDS spend years cycling through physiotherapy, pain management, rehabilitation programs, surgeries, specialist consultations, assistive technologies, and other interventions.

These treatments may be necessary and beneficial.

However, they do not remove the permanence of the disability itself.

For participants with conditions such as hEDS, there may never be a point at which treatment is considered “complete.”

New complications emerge.

Additional injuries occur.

Different interventions become available.

Management strategies evolve over time.

Without careful implementation, there is a risk that participants could become trapped in an ongoing cycle of proving they have exhausted every available treatment option despite already living with permanent impairment.

This creates several concerns.

First, it may place substantial financial, physical, and psychological burdens on participants who are required to repeatedly demonstrate that further treatment is unlikely to produce meaningful improvement.

Second, it may disadvantage participants with rare, poorly understood, or medically complex conditions where treatment pathways are uncertain or continually evolving.

Third, it risks creating a system in which access depends less on the permanence of disability and more on a participant’s ability to continually navigate medical and administrative processes.

For people with significant disability, this can become a form of disability-related labour in itself.

The central question should remain whether a person’s impairment is permanent and whether it results in substantially reduced functional capacity.

The existence of ongoing treatment should not be interpreted as evidence that a disability is temporary.

Indeed, many of the most permanent disabilities require ongoing treatment throughout a person’s lifetime.

In my own case, I continue to engage in extensive medical treatment, rehabilitation, and pain management.

I undergo these interventions because they help me preserve some level of function and quality of life.

I do not undertake them because there is a realistic prospect of curing my disability.

The fact that I continue to seek treatment does not make my condition any less permanent.

It reflects the reality of living with a progressive and incurable disorder.

Page 17

The Committee should therefore ensure that implementation of the permanence provisions Clearly recognises the distinction between treatment that manages disability and treatment That is reasonably expected to remove or substantially reverse disability.

Participants should not be required to repeatedly prove permanence simply because they Continue to pursue appropriate medical care.

A person should not be placed in the impossible position of choosing between accessing treatment and demonstrating eligibility for disability support.

The NDIS was established to support people living with permanent disability.

For many participants, permanence and ongoing treatment are not contradictory concepts.

They are the reality of everyday life.

Page 18

7. SUPPORTS ARISING DIRECTLY FROM ELIGIBLE IMPAIRMENTS (PART 3)

The Bill proposes that funded supports must arise directly from the impairment or impairments through which a participant gains access to the NDIS.

The objective of ensuring that NDIS funding remains connected to disability-related needs is understandable.

However, this provision raises significant concerns for participants living with complex, multi-system conditions where impairments interact, overlap, and cannot be meaningfully separated in practice.

This is particularly relevant for Hypermobile Ehlers-Danlos Syndrome. hEDS is not a single-system condition.

It is a connective tissue disorder that affects multiple body systems simultaneously and creates a cascade of interrelated functional impacts.

My disability cannot be neatly divided into isolated categories.

Chronic pain affects mobility. Mobility limitations affect parenting. Fatigue affects self-care. Joint instability affects community participation. Neurological symptoms affect endurance. Reduced physical capacity affects household functioning, social participation, and family life.

Each aspect of my disability influences every other aspect.

The functional consequences I experience arise not from a single impairment operating in isolation, but from the cumulative interaction of multiple impairments occurring simultaneously.

This is the reality for many people living with complex disability.

The practical impact of disability often emerges from the combined effect of several impairments rather than from any one condition considered independently.

A support that enables safe parenting, community participation, mobility, or daily living may be responding to the interaction of pain, fatigue, instability, neurological symptoms, and functional limitations all at once.

Page 19

Attempting to identify a single impairment as the direct cause of a support need may not reflect clinical reality.

There is therefore a risk that a narrow interpretation of this provision could create artificial distinctions between impairments that are inseparable in everyday life.

Supports that are clearly necessary to address functional limitations may become vulnerable to dispute simply because their relationship to a particular impairment cannot be easily isolated.

This would be particularly concerning if participants are required to demonstrate a direct and exclusive connection between individual supports and specific impairments.

For people with complex disability, functional needs rarely arise in such a linear way.

The NDIS has historically focused on the functional impact of disability rather than requiring participants to separate interconnected aspects of their condition.

This approach better reflects how disability is experienced in practice.

In my own case, the supports that enable me to remain safe at home, reduce injuries, participate in family life, attend medical appointments, and engage with my community are responding to the combined effect of multiple impairments.

Their value lies in the functional outcomes they achieve.

They cannot always be attributed to a single symptom, diagnosis, or body system.

The Committee should therefore ensure that implementation of this provision maintains a strong focus on functional need and recognises the cumulative and interacting nature of complex disability.

Participants with multi-system conditions should not be disadvantaged because their impairments are interconnected rather than easily separated into discrete categories.

The purpose of disability support should remain the same: to address the real-world functional consequences of disability and enable meaningful participation in everyday life.

That objective is best achieved by recognising disability as it is experienced, not as it appears within administrative classifications.

20

8. MINISTERIAL DETERMINATIONS AND REDUCTIONS TO SUPPORT CATEGORIES (PART 4)

The Bill introduces provisions allowing the Minister to make determinations that may reduce funding for specified categories of supports across groups of participants.

The objective of ensuring the financial sustainability of the Scheme is understandable.

However, there is concern that broad powers to reduce funding categories may unintentionally undermine the individualised and participation-focused nature of the NDIS.

The NDIS was not established solely to fund personal care or respond to crisis.

It was established to enable people with disability to participate in ordinary life.

For many participants, supports relating to community participation, capacity building, social connection, skill development, and independence are not secondary or discretionary supports.

They are fundamental to achieving the objectives of the Scheme.

There is a risk that these forms of support may be viewed as less essential than supports associated with immediate physical care needs.

However, this distinction does not reflect the reality of living with disability.

Participation is not a luxury.

Community inclusion is not a luxury.

Maintaining relationships, parenting, accessing education, developing skills, engaging with society, and participating in everyday life are not optional extras.

They are the very outcomes the NDIS was designed to support.

In my own life, supports that facilitate community participation and family involvement have had a transformative impact.

These supports allow me to leave my home safely, attend appointments, participate in my child’s life, maintain social connection, and remain engaged with my community despite severe disability.

Without such supports, the consequences extend far beyond reduced participation.

Isolation increases. Physical and mental health deteriorates. Family relationships come under greater strain. The risk of crisis and hospitalisation increases.

Page 21

The long-term costs to individuals, families, and government systems can become substantially greater than the cost of the supports themselves.

This is particularly important for parents with disability.

Supports that enable disabled parents to participate in family life are not merely supports for the individual.

They help preserve family stability, strengthen parent-child relationships, reduce carer burden, and improve outcomes for children.

For me, the NDIS has not simply improved my quality of life.

It has enabled me to remain an active participant in my son’s childhood. It has allowed me to continue fulfilling my role as a parent despite living with a severe and progressive disability.

The NDIS did not provide luxury.

It provided the practical support necessary for me to remain connected to my family and community.

When considering mechanisms that may reduce support categories, it is important that the value of these supports be assessed according to their real-world impact rather than assumptions about whether they are essential.

Supports that enable participation often prevent far more expensive forms of intervention later.

They reduce reliance on hospitals, crisis services, mental health systems, and informal carers.

They strengthen family functioning and support long-term independence.

A sustainable NDIS should not be achieved by reducing the very supports that enable people with disability to participate in society.

The Committee should ensure that any future exercise of these powers remains consistent with the fundamental purpose of the Scheme and does not disproportionately affect supports that promote participation, inclusion, independence, parenting, and community connection.

Protecting the future of the NDIS should mean protecting the outcomes the Scheme was created to achieve.

For many participants, those outcomes are found not only in survival, but in participation.

22

9. PLAN END DATES, FUNDING FLEXIBILITY, AND PLAN SUSPENSION POWERS (PARTS 5 AND 7)

The Bill introduces legislated plan end dates, changes to funding arrangements, restrictions on the carry-over of unused funds, and new plan suspension mechanisms.

These reforms are intended to improve consistency, accountability, and administrative clarity within the Scheme.

While these objectives are understandable, there is concern that increased rigidity within planning and funding arrangements may create unintended difficulties for participants whose disability is complex, fluctuating, or unpredictable.

My disability does not follow a predictable pattern.

Periods of relative stability can be interrupted by acute injury, significant deterioration, surgery, hospitalisation, or prolonged recovery.

Support needs can change rapidly.

At times, I may require substantially more assistance to remain safe and maintain basic functioning. At other times, support utilisation may be lower because I am recovering well, have additional informal support available, or have temporarily adapted to changing circumstances.

This variability is not evidence that support is unnecessary.

It is a normal feature of many complex disabilities.

For this reason, flexibility within planning and funding arrangements can be critically important.

The proposal preventing the carry-over of unspent funds raises particular concern for participants whose support needs fluctuate significantly over time.

A participant may have periods where less support is required, only to experience sudden deterioration later in the plan period. The inability to retain flexibility within funding arrangements may reduce a participant’s ability to respond to these changes without administrative delay. This is especially relevant for conditions characterised by injury cycles, episodic deterioration, surgery, recovery periods, or unpredictable functional changes.

In such circumstances, flexibility is not a matter of convenience.

It is a safeguard against instability.

Similarly, legislated plan end dates and increased reliance on reassessment processes may create additional administrative burden for participants living with permanent disability.

There is a legitimate distinction between reviewing whether supports remain appropriate and repeatedly requiring participants to re-establish the existence of a lifelong condition.

For people with permanent and significant disability, repeated reassessment can become a substantial burden in itself.

Participants may be required to obtain new reports, attend assessments, gather evidence, and navigate administrative processes despite there being little prospect that the underlying disability will significantly improve.

For many participants, this process consumes time, money, energy, and resources that could otherwise be directed toward maintaining health, independence, and community participation.

The Bill’s plan suspension provisions also warrant careful consideration.

Participants with severe disability may experience periods of hospitalisation, medical crisis, cognitive overload, communication barriers, mental health challenges, or reduced capacity to engage with administrative processes.

For some participants, responding promptly to correspondence or administrative requests may be significantly more difficult during periods of illness or deterioration.

There is therefore a risk that participants could be disadvantaged not because they no longer require support, but because their disability temporarily limits their ability to engage with administrative requirements.

Appropriate safeguards should ensure that participants are not penalised for disability-related barriers to communication or engagement.

Any suspension mechanism should prioritise participant protection and continuity of support, especially where there is evidence of ongoing disability and vulnerability.

The Committee should ensure that implementation of these provisions maintains sufficient flexibility to accommodate the realities of fluctuating and complex disability.

Planning arrangements should recognise that support needs do not always occur in neat or predictable patterns.

Administrative systems function best when they are capable of responding to the realities of disability rather than requiring disability to conform to administrative expectations.

For participants living with lifelong disability, certainty and continuity are not luxuries.

They are essential components of safety, stability, and meaningful participation in everyday life.

24

10. INTERACTION WITH OTHER SERVICE SYSTEMS AND COST SHIFTING (PART 9)

The Bill includes provisions relating to the interaction between the NDIS and other service systems, including compensation schemes and supports that may be available through alternative programs.

It is reasonable that responsibility for supports is allocated appropriately between government systems.

However, participants should not bear the burden of navigating disputes between agencies or be left without essential supports while questions of responsibility are resolved.

For people living with significant disability, delays in support provision can have immediate and serious consequences.

Access to necessary supports should not depend upon a participant’s ability to navigate complex administrative boundaries between multiple systems.

More broadly, consideration should be given to the risk of cost shifting.

Reducing access to disability supports does not eliminate the underlying needs that those supports address.

The need remains.

The question is simply which system ultimately bears the cost.

In my own case, NDIS supports reduce injuries, assist me to manage dislocations safely at home, reduce reliance on hospital services, support my ability to parent, and help me remain living safely within the community.

For people living with rare conditions such as Hypermobile Ehlers-Danlos Syndrome, avoiding unnecessary hospital presentations is not merely a matter of convenience. Many healthcare professionals have limited familiarity with the condition, and inappropriate management can increase the risk of injury, complications, and medical trauma. Supports that enable participants to safely manage disability at home where appropriate can therefore improve both participant safety and health system efficiency.

In my own experience, support workers often help me manage recurrent dislocations, mobility limitations, and functional deterioration at home, preventing situations that might otherwise result in emergency department presentations or hospital admissions.

Without these supports, the consequences would not disappear.

They would be transferred elsewhere.

Page 25

More presentations to emergency departments.

More hospital admissions.

Greater reliance on specialist medical services.

Increased pressure on family carers.

Higher rates of mental health deterioration and crisis intervention.

Potentially greater reliance on residential or institutional forms of care.

This is not unique to my circumstances.

Many NDS supports function as preventative interventions.

They prevent deterioration before it occurs.

They reduce the likelihood of crisis.

They enable people to maintain independence and remain connected to their families and communities.

As a result, they often reduce costs in other areas of government expenditure.

A disability support system should therefore be evaluated not only according to what it costs, but according to what costs it prevents.

The long-term sustainability of the NDIS cannot be assessed in isolation from the broader health, social services, mental health, aged care, and family support systems with which it interacts.

When considering reforms intended to improve sustainability, the Committee should ensure that any reduction in expenditure within the NDIS does not simply result in increased expenditure elsewhere.

A genuinely sustainable system is one that achieves better outcomes for participants while reducing overall demand on more intensive and expensive forms of support.

In many cases, timely and appropriate disability support is not only the most humane option. It is also the most economically responsible one.

26

11. COMPLIANCE, FRAUD, AND ENFORCEMENT

I support measures aimed at protecting the integrity of the NDIS and preventing fraud, exploitation, and misuse of public funds.

Public confidence in the Scheme is important.

Participants, providers, taxpayers, and governments all benefit when funding is directed toward legitimate supports and appropriate safeguards exist to address misconduct.

People with disability have as much interest in protecting the integrity of the NDIS as anyone else.

The future sustainability of the Scheme depends on public trust that funding is being used appropriately and effectively.

However, compliance systems must be designed carefully to ensure that efforts to prevent misuse do not unintentionally create barriers for participants with legitimate and complex support needs.

Participants living with severe disability often require:

●​  Multiple providers;​

●​ High levels of support utilisation;​

●​  Frequent interactions with the health system;​

●​  Significant coordination between services; and​

●​ Complex support arrangements that change over time.

These characteristics should not automatically be viewed as indicators of risk or non-compliance.

For many participants, they are simply the reality of living with complex disability.

There is a risk that increasingly compliance-focused systems may create unintended consequences.

Providers may become more risk-averse when supporting participants with complex needs.

Administrative requirements may increase.

Participants may find themselves required to spend more time justifying legitimate supports or navigating compliance processes.

Page 27

In some circumstances, fear of scrutiny may discourage participants from seeking supports they genuinely require.

This would be contrary to the purpose of the Scheme.

It is also important to recognise that discussions about fraud can influence public perceptions of disability.

Public debate often focuses on isolated examples of misuse while overlooking the reality that the overwhelming majority of participants rely on the NDIS for legitimate and essential supports.

Fraud should be addressed decisively.

However, the existence of fraud should not be used to justify assumptions that participants themselves are responsible for misuse, nor should it contribute to a culture in which people with disability are viewed with suspicion simply because they require support.

In many reported cases, misconduct has involved providers, intermediaries, or organised criminal activity rather than participants themselves.

Maintaining this distinction is important both for public confidence and for ensuring that compliance measures remain proportionate.

For people living with severe disability, the NDIS is not a source of discretionary spending.

It is the mechanism through which essential supports are delivered.

Compliance systems should therefore be designed to protect participants as much as they protect public funds.

Safeguarding should enhance access to appropriate supports, not create additional barriers to obtaining them.

The Committee should ensure that implementation of compliance and enforcement measures remains proportionate, transparent, and responsive to the realities of complex disability.

Participants with legitimate high-support needs should not be disadvantaged simply because their circumstances are more complex than those of other participants.

A strong and sustainable NDIS requires both integrity and accessibility.

These objectives are not mutually exclusive.

The most effective safeguards are those that prevent misuse while preserving the Scheme’s ability to support the people for whom it was created.

28

12. RECOMMENDATIONS AND SAFEGUARDS

This submission does not oppose reform of the NDIS.

Nor does it oppose efforts to improve Scheme sustainability, integrity, consistency, and accountability.

However, I respectfully submit that the Bill should be implemented with safeguards that ensure participants with complex, fluctuating, degenerative, and multi-system disabilities are not unintentionally disadvantaged.

To support both sustainability and participant outcomes, I recommend that the Committee consider the following safeguards and implementation principles.

Functional Capacity Assessments

• Ensure assessment frameworks explicitly recognise fluctuating, episodic, and invisible disabilities.
• Require assessment processes to consider whether activities can be performed safely, reliably, repeatedly, and sustainably, rather than whether they can be performed once in a controlled environment.
• Require consideration of cumulative impairment, post-exertional deterioration, fatigue, pain, and long-term consequences of activity.
• Ensure assessors have appropriate medical expertise and understanding of complex and multi-system disabilities.
• Ensure assessment frameworks and implementation guidance adequately recognise rare, poorly understood, and multi-system conditions, including those characterised by fluctuating function, cumulative injury risk, and delayed consequences of activity, whose disability may not be fully captured through standardised assessment tools.

Access Eligibility and Permanence Requirements

• Clarify that permanent disabilities may continue to require ongoing treatment and management.
• Ensure participants are not required to repeatedly demonstrate permanence where there is clear evidence of lifelong impairment.
• Recognise that treatment aimed at symptom management or preventing deterioration is not equivalent to treatment capable of removing disability.

**29

● Protect participants with rare, genetic, degenerative, and medically complex conditions from unnecessary reassessment of permanence.

Supports Arising from Eligible Impairments

● Maintain a strong focus on functional impact when determining support eligibility.

● Recognise that participants with multi-system disabilities may experience support needs arising from the interaction of multiple impairments rather than a single identifiable cause.

● Ensure participants are not excluded from necessary supports because their disability does not fit neatly within administrative categories.

Ministerial Determinations and Support Categories

● Ensure future funding determinations remain consistent with the objectives and principles of the NDIS Act.

● Protect supports that promote participation, inclusion, independence, parenting, skill development, and community engagement.

● Recognise community participation and capacity-building supports as preventative investments rather than discretionary expenditures.

Planning, Funding Flexibility, and Plan Suspensions

● Ensure planning arrangements retain sufficient flexibility to accommodate fluctuating and unpredictable disability.

● Consider mechanisms that allow participants to respond to periods of deterioration, injury, surgery, or increased support need.

● Minimise unnecessary reassessment burdens for participants with lifelong disabilities.

● Ensure plan suspension powers include safeguards protecting participants who experience disability-related barriers to communication or administrative engagement.

Interaction with Other Service Systems

● Ensure participants are not left without supports while responsibility is being determined between systems.

Compliance and Enforcement

• Ensure compliance frameworks remain proportionate and responsive to the realities of complex disability.

• Distinguish clearly between fraudulent conduct and legitimate high-support needs.

• Avoid creating administrative burdens that discourage participants from accessing necessary supports.

• Maintain participant protections alongside fraud prevention measures.

Human Rights and Ongoing Consultation

• Ensure implementation remains consistent with Australia’s obligations under the Convention on the Rights of Persons with Disabilities.

• Continue meaningful consultation with people with disability throughout implementation and review of the reforms.

• Establish mechanisms to monitor the impact of the reforms on participants with complex, fluctuating, and high-support disabilities.

• Ensure transparency, reviewability, and procedural fairness remain central to decision-making processes.

Collectively, these safeguards would assist in achieving the Government’s stated objectives of sustainability and integrity while preserving the NDIS’s foundational commitment to participation, inclusion, dignity, and functional support.

Reform is most likely to succeed when it improves administrative systems without losing sight of the people those systems exist to serve.

31

13. FINAL POSITION AND CLOSING STATEMENT

I support the objective of securing the NDIS for future generations.

A sustainable, accountable, and effective Scheme is essential to ensuring that future Australians with disability can access the supports they need to participate fully in society.

The long-term sustainability of the NDIS is a legitimate and important public policy goal.

However, sustainability should not be achieved through reforms that unintentionally reduce the Scheme’s ability to support the people for whom it was created.

Throughout this submission, I have sought to highlight the potential impact of the proposed reforms on participants living with complex, fluctuating, degenerative, and multi-system disabilities.

My concerns are not based on opposition to reform.

They arise from lived experience of how disability operates in practice, and from the reality that many participants do not fit neatly within standardised administrative frameworks.

The NDIS works best when it recognises functional reality.

It works best when supports are responsive to the way disability is actually experienced rather than how it appears on paper.

It works best when it focuses on participation, independence, dignity, and inclusion.

My own experience demonstrates the value of that approach.

Before receiving NDIS support, I spent years becoming increasingly isolated by a progressive and incurable disability.

I struggled to participate in family life, relied heavily on hospital services, and watched much of my son’s early childhood from the sidelines.

The NDIS changed that trajectory.

It reduced injuries.

It reduced hospital reliance.

It improved safety.

It strengthened family stability.

It enabled participation.

Page 32

Most importantly, it allowed me to remain an active parent despite living with severe disability.

The NDIS did not provide luxury.

It provided the support necessary for me to live safely, participate in my community, and remain present in my child’s life.

In doing so, it achieved precisely what the Scheme was designed to achieve.

This is why it is important that reforms be evaluated not only according to administrative efficiency or expenditure reduction, but according to their real-world impact on the lives of participants.

The success of the NDIS should not be measured solely by what it costs.

It should also be measured by what it prevents:

• Preventable injuries.
• Preventable deterioration.
• Preventable deaths.
• Preventable hospitalisations.
• Preventable isolation.
• Preventable family breakdown.
• Preventable exclusion from community life.

A sustainable NDIS and a humane NDIS are not competing objectives.

The most effective supports are often those that reduce long-term costs by preventing crisis before it occurs.

The future of the NDIS is therefore not simply a question of financial stewardship.

It is also a question of what kind of society Australia wishes to be.

A society that values the participation of people with disability, recognises the contribution of disabled parents, workers, students and carers, and upholds its commitment to equality, dignity and inclusion.

The future of the NDIS is not only about the future of a government program.

It is also about the place disabled Australians occupy within Australian society.

Page 33

The central question before the Committee is not simply whether the Scheme becomes more administratively efficient.

It is whether, following reform, Australians with disability remain able to live safely, maintain relationships, raise their children, participate in their communities, and exercise the same fundamental rights and opportunities as everyone else.

For people like me, the NDIS is not an abstract policy framework.

It is the difference between participation and exclusion.

Between safety and deterioration.

Between independence and crisis.

Between watching life happen from the sidelines and being able to take part in it.

I respectfully urge the Committee to ensure that implementation of the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 preserves the foundational principle upon which the NDIS was built:

Australians with permanent and significant disability should be supported to live ordinary lives, participate fully in society, and enjoy the same dignity, autonomy, and opportunities as every other citizen.

No mother should lose her place in her child’s life because her country decided she was too expensive to support.

Appendix A – The NDIS Gave My Son His Mother Back: The Human Cost of Disability Support Reform

My name is B. I am 32 years old, a mother, and I spend most of my life trying to survive a body that is literally falling apart.

I live with severe Hypermobile Ehlers-Danlos Syndrome (hEDS), a rare genetic connective tissue disorder that causes joints throughout my body to dislocate—often multiple times a day. I have also suffered a stroke.

It is a disease that tortures the people born with it; the NDIS is keeping me alive.

Instead of existing part-time in emergency rooms or residential care away from my toddler and husband, NDIS funding has allowed me to remain safely at home with the assistance of qualified support workers who help me manage my condition, including relocating dislocated joints before injuries escalate into medical emergencies.

I cannot begin to describe how different my life is after just one year of support.

Through Assistance with Daily Living—cooking, cleaning, laundry, mobility support, medication assistance, and help to continue in my role as a mother—I have significantly reduced the number of injuries I suffer day to day. For the first time in years, I have not just stability, but genuine joy in my life despite living with a degenerative and untreatable disease. hEDS causes progressive joint instability, spinal degeneration, disabling fatigue, mobility impairment, and widespread systemic complications. I suffered a stroke at 30. Over recent years, my condition deteriorated to the point where I now require daily assistance with tasks most people never think twice about—showering, dressing, preparing food, walking safely, caring for my son, or simply getting out of bed.

But my story is not only about disability.

It is about motherhood, isolation, and what happens when support determines whether someone gets to participate in life—or slowly disappear from it.

Before I became disabled, I lived a full and active life. I worked as a journalist across some of Australia’s leading media organisations. I travelled the world surfing and skiing, camped around Australia, attended music festivals with friends, and dreamed about the future I would build for my family.

Then, at what should have been one of the happiest periods of my life following the birth of my son, my hEDS rapidly progressed and my body began to deteriorate significantly. I found myself watching life happen to everyone else while my own body literally fell apart.

Page 35

I am the mother of a beautiful three-year-old boy whom I have not been able to properly lift in my arms since he was a newborn.

I lived for years without NDIS support before finally being approved in July 2025. During my son’s first two years of life, I was paralysed by fear and devastation, barely alive while watching my child grow up from the sidelines.

I frequently went without basic care. With little family support, and my husband suddenly becoming the sole income earner for a family drowning in medical expenses, he often had no choice but to travel internationally for work for weeks at a time.

Breastfeeding my son was often the only thing I could manage.

I went days without proper meals, showers, hydration, leaving the house, or meaningful human interaction. Our decade-long relationship was under immense strain. Instead of the blissful newborn period my friends experienced, I found myself suicidal, bedridden, isolated, and barely recognisable to myself.

As my son grew, all he wanted was for his mum to join in his world—to run, climb, jump, explore parks, visit the beach, and play. I wanted more than anything to give him those memories.

Instead, I spent my days in ambulances, hospital waiting rooms, spinal surgeries, rehabilitation, and recovery, unable to safely manage even ordinary moments of affection because something as simple as a hug, a hand-pull, or my toddler jumping into my arms could dislocate joints throughout my body.

The NDIS did not give me luxury.

It gave my son his mother back.

Now, after just ten months as an NDIS participant, I have finally begun experiencing life the way all people deserve to live—disabled or otherwise—with dignity, safety, companionship, and hope for the future.

People often imagine disability as inconvenience. What they do not see is the grief of slowly losing your role in your own life.

With support workers beside me, I can participate in motherhood again.

I can go to the park because someone can help push my son on the swing without me injuring myself. We can visit the beach—one of our favourite places—because even on my worst days, I still have support to help with bathing, meals, medications, mobility, and basic care so I can conserve enough energy to simply be emotionally present with my child.

Twelve months ago, the idea that my life could become not only survivable, but enjoyable again, felt impossible.

The thought of returning to a life confined to bed—slowly losing my husband and son to a world that no longer has space for me in it—is devastating.

Page 36

There is no standardised treatment for my condition. Much of my life has become an exhausting cycle of surgeries, hospital admissions, rehabilitation, experimental procedures, and pain management strategies that may or may not work.

I spend months each year in hospitals hoping the next intervention might stabilise my body enough to preserve some quality of life—or at the very least, stop my arms and legs from dislocating from my body.

Over time, my physical degeneration will inevitably worsen. I face increasing loss of mobility, likely permanent wheelchair reliance, and serious long-term complications associated with this disease, many of them life-threatening.

I have lost friendships because I became too sick to participate in the world.

I wave goodbye while my family leaves for outings my body cannot tolerate. I have missed birthdays, milestones, celebrations, and ordinary moments because disability, lack of support, or an inaccessible world made participation impossible.

The isolation is profound.

The emotional toll on families like mine is enormous. My partner works constantly and travels internationally for much of the year to support us financially, while also carrying the responsibilities of caregiver, husband, nurse, driver, and parent. Without external support, families are pushed beyond breaking point.

This is why the NDIS matters.

For people like me, the NDIS is not luxury or convenience. It is survival. It is access to basic human rights—food, hygiene, safety, mobility, healthcare, and connection to the world beyond our homes.

Support workers are the reason I can safely shower, prepare meals, attend medical appointments, and leave the house. They reduce injuries and falls. They help me manage dislocations at home so I am not constantly hospitalised. They help protect my body from the physical demands of caring for a young child and allow me sufficient time to recover from injuries and dislocations so I can spend meaningful time with my husband and child instead of sacrificing every ounce of strength simply trying to survive the day.

Most importantly, support gives disabled people dignity.

The public conversation around the NDIS often focuses on financial cost. Rarely does it acknowledge the human cost of going without it.

Without support, disabled Australians become isolated, unsafe, trapped at home, and increasingly dependent on exhausted family members. Relationships strain under the weight of caregiving responsibilities. Mental health deteriorates. Parents miss precious years of their children’s lives, while children can become burdened with caring responsibilities far beyond their age.

Page 37

The NDIS gives people like me the opportunity to remain active participants in our families and our communities. It allows me to be a mother—not just a patient—and to begin rebuilding a sense of identity beyond illness.

Perhaps one day it may even allow me to have another child: a child who will be safe, loved, and cared for because they were born into a country that believes disabled women deserve he same opportunity to build a family as anyone else.

Whether I receive ongoing NDIS support should never determine whether my family can safely grow like any other Australian family.

And yet, for many of us, it does.

Worse still, many disabled parents live with the fear that without essential supports they may lose the very things they are fighting to preserve—their independence, their health, their relationships, and even their ability to care for their children. Likewise, many parents of disabled children fear a future in which they can no longer provide the support their children need, leaving institutional care, hospitalisation, or crisis intervention as the only remaining options.

Reducing support does not eliminate need. Disability does not disappear when funding does.

When people lose access to preventative and stabilising supports through the NDIS, the consequences are often shifted elsewhere: to public hospitals, emergency departments, mental health services, aged care systems, housing services, child protection agencies, carers, and other government-funded programs. The costs do not vanish—they are simply transferred.

In many cases, early intervention and ongoing support through the NDIS prevents far more expensive outcomes in the future. It helps people remain healthy, safe, independent, employed where possible, connected to their communities, and able to care for their families. Without those supports, many people experience preventable injuries, worsening health, crisis admissions, family breakdown, homelessness, institutionalisation, and increased reliance on multiple government systems.

Far from reducing the burden on taxpayers, inadequate disability support often increases it. The belief that cutting support today will generate long-term savings is, in many cases, profoundly short-sighted. Taxpayers may appear to save money in one budget line, only to pay many times more through public services required to respond to the consequences later. Disability-related needs do not disappear when funding is withdrawn; they simply re-emerge elsewhere in the system, often at far greater human and financial cost.

A sustainable NDIS is important. But sustainability cannot be achieved by withdrawing the very supports that prevent greater costs elsewhere. True sustainability means investing in supports that preserve independence, reduce demand on hospitals and crisis services, strengthen families, and enable disabled Australians to participate in society rather than become increasingly dependent upon it.

Page 38

Disabled children are growing up hearing public debates that frame support as a burden and their needs as a cost. Families are left wondering whether their futures, their opportunities, and their dignity are viewed as worthy of investment at all.

Disabled people should not have to fight to prove that our lives are worth supporting. We should not have to justify our right to parent, work, participate in society, build relationships, or live independently with dignity and safety.

The NDIS is not simply a funding program. It is an investment in human potential, family stability, community participation, and fundamental human rights.

The debate surrounding the future of the NDIS is not ultimately about dollars and cents. It is about freedom, safety, dignity, and whether disabled Australians are afforded the opportunity to participate fully in family and community life.

For me, it will determine whether I can continue to be the mother my son knows today: present, engaged, safe, and hopeful for the future.

No mother should lose her place in her child’s life because her country decided she was not worth the cost.

Appendix B – Understanding

Hypermobile Ehlers-Danlos Syndrome (hEDS)

What Is Hypermobile Ehlers-Danlos Syndrome?

Hypermobile Ehlers-Danlos Syndrome (hEDS) is a rare, lifelong genetic connective tissue disorder that affects the body’s collagen and connective tissues.

Connective tissue is found throughout the body and provides strength, stability, and support to joints, muscles, ligaments, tendons, blood vessels, organs, skin, and other structures.

Because connective tissue exists throughout virtually every bodily system, hEDS is considered a multi-system disorder.

The condition is permanent, currently incurable, and often progressive.

There is no treatment capable of correcting the underlying connective tissue abnormality.

Management focuses on symptom control, injury prevention, rehabilitation, and preserving function for as long as possible.

How Does hEDS Affect Daily Life?

The effects of hEDS vary significantly between individuals.

For many people, symptoms extend far beyond joint hypermobility.

Common features may include:

• Recurrent joint dislocations and subluxations;
• Chronic musculoskeletal pain;
• Joint instability;
• Early degenerative changes affecting the spine and other joints;
• Fatigue;
• Reduced endurance;

**Balance and coordination difficulties;

**Nerve compression and neurological symptoms;

**Poor proprioception (reduced awareness of body position);

**Gastrointestinal dysfunction;

**Autonomic nervous system dysfunction, including Postural Orthostatic Tachycardia Syndrome (POTS);

**Pelvic instability and pelvic pain;

**Poor healing;

**Increased injury and deterioration risk; and

**Significant mobility limitations.

**High surgical risk

A more meaningful assessment considers whether activities can be performed:

• Safely;
• Reliably;
• Repeatedly;
• Sustainably; and
• Without causing significant deterioration.

For this reason, people with hEDS often experience challenges within systems that rely heavily on snapshot assessments or standardised measures of function.

Why hEDS Can Be Difficult to Assess

Unlike some disabilities that affect a single body system, hEDS commonly affects multiple systems simultaneously.

The practical impact of the condition often arises from the interaction of:

• Pain;
• Fatigue;
• Joint instability;
• Mobility limitations;
• Neurological symptoms;
• Autonomic dysfunction;
• Injury risk; and
• Functional restrictions.

These impairments do not operate independently.

Injury affects pain. Pain affects mobility. Mobility affects self-care. Fatigue affects participation. Instability affects safety.

As a result, support needs often arise from the cumulative effect of multiple impairments rather than a single identifiable symptom.

Page 42

This can make hEDS difficult to categorise within rigid administrative frameworks despite causing significant disability.

Treatment Does Not Mean Recovery

People living with hEDS frequently engage in extensive medical treatment throughout their lives.

This may include:

• Physiotherapy;
• Rehabilitation programs;
• Physical therapies;
• Pain management;
• Specialist medical care;
• Surgery;
• Mobility aids;
• Assistive technology; and
• Ongoing therapeutic interventions.

These treatments are important and may improve quality of life. However, they do not cure the condition. Nor do they restore normal connective tissue function.

The existence of ongoing treatment should therefore not be interpreted as evidence that a person’s disability is temporary or likely to resolve.

For many people with hEDS, treatment is directed towards slowing deterioration, managing symptoms, and preserving function rather than achieving recovery.

Parenting and Family Life

For parents living with severe hEDS, disability can affect many ordinary aspects of family life.

Tasks such as lifting children, carrying groceries, preparing meals, attending school activities, participating in play, driving, household management, and responding to unexpected situations may carry significant physical risk.

The impact of disability therefore extends beyond the individual. It often affects family relationships, parenting capacity, caregiver burden, financial security, and social participation.

Appropriate disability supports can help reduce these impacts and enable parents with disability to remain active participants in family life.

APPENDIX C – SUMMARY OF KEY

ISSUES & RECOMMENDATIONS

Submission to the Senate Community Affairs Legislation Committee

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

Who I Am

I am a 32-year-old mother living with severe Hypermobile Ehlers-Danlos Syndrome (hEDS), a rare genetic connective tissue disorder causing recurrent joint dislocations, spinal degeneration, chronic pain, neurological complications, mobility impairment, and progressive functional decline.

The NDIS enables me to live safely in my community, participate in family life, fulfil my role as a parent, and reduce reliance on hospitals and crisis services.

The NDIS did not give me luxury.

It gave my son his mother back.

Core Position

I support the objective of securing the NDIS for future generations.

However, I am concerned that aspects of the Bill may unintentionally disadvantage participants with complex, fluctuating, degenerative, and multi-system disabilities.

The effectiveness of the reforms should be assessed not only by whether they improve administrative efficiency or reduce expenditure growth, but by whether disabled Australians remain able to:

• Live safely in their communities;
• Participate in family life;
• Maintain independence;
• Avoid preventable hospitalisation;

Key Principles

• Avoid preventable deterioration;

• Exercise autonomy and choice; and

• Participate equally in Australian society.

Key Concerns

Functional Capacity Assessments

Standardised assessments may not adequately capture fluctuating, invisible, or episodic disability.

Assessments should consider whether tasks can be performed safely, reliably, repeatedly, and sustainably.

Permanence Requirements

Permanent disabilities can still require ongoing treatment and management.

Participants should not be required to repeatedly prove permanence because they continue to seek appropriate medical care.

Supports Arising from Eligible Impairments

Participants with complex multi-system conditions often experience functional limitations arising from the interaction of multiple impairments.

Support eligibility should remain focused on functional impact rather than narrow administrative categorisation.

Ministerial Reduction Powers

Supports relating to community participation, parenting, inclusion, and independence should not be treated as discretionary expenditures.

These supports often prevent more expensive forms of intervention and promote long-term participation.

Planning Flexibility

Participants with fluctuating conditions require planning arrangements that can respond to injury, deterioration, surgery, and recovery.

Flexibility is a safeguard, not a luxury.

Compliance and Enforcement

Fraud prevention is important.

However, compliance measures should distinguish between fraudulent conduct and legitimate high-support needs.

Key Recommendations

• Ensure functional assessments recognise fluctuating and invisible disability.
• Clarify that ongoing treatment does not negate permanence.
• Maintain a strong focus on functional impact when determining support eligibility.
• Protect participation, parenting, and community inclusion supports.
• Retain flexibility for participants with fluctuating support needs.
• Ensure plan suspension and reassessment processes include safeguards for vulnerable participants.
• Maintain ongoing consultation with people with disability throughout implementation.
• Ensure all reforms remain consistent with Australia’s obligations under the Convention on the Rights of Persons with Disabilities.

Final Message

A sustainable NDIS and a rights-based NDIS are not competing objectives.

The true test of this Bill is whether Australians with disability remain able to live, parent, participate, and belong within their communities.

The future of the NDIS is not only about the future of a government program.

It is also about the place disabled Australians occupy within Australian society.