National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2376
Submission on the NDIS Future Generation Bill 2026
Date: 31st May 2026
Name:
I am a: Family member / supporter, primary caregiver, and autistic AuDHD adult.
- Introduction / My Connection to this Issue
I am an autistic AuDHD mother and primary caregiver supporting three NDIS participants with significant and competing disability support needs.
I am the mother of three sons, aged 11, 13 and 27. I am also the primary caregiver of my 20-year-old non-biological foster brother, whom I have cared for since he was 15 years old. Three members of my household are NDIS participants.
My youngest son has a rare genetic syndrome, Mowat-Wilson Syndrome, as well as Autism Spectrum Disorder, intellectual disability, epilepsy, and a chronic bowel condition that requires daily invasive bowel irrigation. He is non-verbal and requires 24- hour supervision and support. His support needs are so significant that he requires 2:1 support during all waking hours to safely manage his medical, behavioural and community access needs.
His disability is not confined to a single diagnosis or support area. It affects every aspect of daily life, including communication, safety awareness, emotional regulation, continence, medical care, learning, community participation and personal care. He experiences behaviours of concern that can place himself and others at risk and requires constant supervision to remain safe.
My middle son, aged 13, is diagnosed with Autism Spectrum Disorder, ADHD and Oppositional Defiant Disorder.
My foster brother is diagnosed with Autism Spectrum Disorder, intellectual disability and diabetes and requires substantial daily support, including 1:1 assistance to maintain his health, independence and participation in everyday life and the community.
All three people I care for have different and constantly competing support needs. Supporting one person does not reduce the needs of another. Every day involves balancing multiple appointments, therapies, behavioural support requirements, medical needs, educational needs, community access requirements and crisis- prevention strategies across three separate NDIS participants.
Our family life is very different from what most people would consider typical. We work incredibly hard to create stability, safety and opportunities for each person in our
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2376
household. Our goal is the same as every other Australian family: for each person to have the opportunity to pursue their own goals, participate in their community, develop independence where possible, and experience a meaningful and ordinary life.
The supports funded through the NDIS are not luxuries in our household. They are life- sustaining and are the very foundation that allows this stability to exist.
Without appropriate supports, the consequences are immediate and significant. My youngest son has previously absconded from our home during the night and gone missing for several hours, requiring emergency intervention. He faces substantial risks associated with impaired danger awareness, medical complexity, behavioural escalation and vulnerability in the community.
Community access, supervision and a well-trained, skilled support team are critical safety measures, not optional lifestyle activities.
Finn’s support needs are persistent, intense and relentless, every day, across all environments.
I am making this submission because the proposed amendments to the NDIS Act have the potential to directly affect the safety, wellbeing, community access and quality of life of all three people I care for, as well as my own capacity to continue in my caregiving role.
I am concerned that changes which reduce support flexibility, restrict community access, increase reliance on informal carers, narrow eligibility pathways, weaken participant safeguards, or disadvantage people with rare conditions could have devastating consequences for families like mine.
In our circumstances, disability supports are what prevent crisis, family breakdown, social isolation, hospitalisation and long-term harm.
I am also deeply concerned about any reduction in a participant’s ability to appeal NDIA decisions regarding their funded supports. For many families, review and appeal processes are the only protection available when decisions do not accurately reflect a participant’s needs. Removing or weakening these safeguards risks leaving highly vulnerable people without the supports they require to remain safe, healthy and connected to their communities.
I am submitting to ensure that the lived experience of families supporting people with profound, complex and lifelong disability is properly considered before these changes are implemented.
While I support the goal of ensuring the long-term sustainability of the NDIS, I am concerned that aspects of the proposed reforms relating to support determinations, funding flexibility, evidence requirements, review rights, decision-making processes and
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2376
participant safeguards may have unintended consequences for people with the highest and most complex support needs.
Throughout this submission, I outline how these proposed changes may affect participants such as my youngest son, as well as the families and support systems that rely upon the NDIS to prevent crisis, support inclusion and maintain safety, stability and quality of life.
3.1 Community Access is a Necessity, Not a Luxury
One of my greatest concerns regarding the proposed changes to the NDIS is the reduction of community access supports and the increasing perception that community participation is a luxury, discretionary or lifestyle support rather than an essential disability support.
For my family, and particularly for my youngest son, community access is not a luxury.
It is a necessity.
As outlined earlier, my youngest son lives with Mowat-Wilson Syndrome and multiple complex disabilities requiring intensive 2:1 support throughout his waking hours. His support needs are persistent, intense and relentless across all environments.
For him, remaining inside the home for extended periods is not simply an inconvenience. It can have significant consequences for his emotional regulation, behaviour, wellbeing and safety.
Community access plays a critical role in helping him regulate, engage with the world around him and safely meet his sensory, emotional and developmental needs.
As a family, we have learned through years of lived experience that regular access to the community is one of the most important preventative supports available to us.
My son generally requires opportunities to leave the home environment at least twice each day to support regulation and reduce escalation.
These outings are not recreational activities.
They are therapeutic, preventative and essential.
When my son has access to appropriate community participation and support, the benefits are significant.
Community access helps him regulate emotionally and behaviourally. It provides opportunities for movement, sensory regulation, learning, communication, routine- building and positive engagement with the world around him.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2376
When he is well-regulated, there is a noticeable reduction in distress, behavioural escalation and risk. He is better able to participate in activities, tolerate transitions, engage with support staff and experience a broader quality of life than would otherwise be possible.
The benefits extend beyond my son.
When he is supported to access the community and maintain regulation, the entire household functions more effectively. There is greater stability, reduced stress, fewer incidents, improved safety and more opportunities for other family members to participate in their own activities, relationships, education and community life.
For my older son, my foster brother and myself, community access support for my youngest son creates opportunities to experience aspects of ordinary life that many families take for granted.
It reduces isolation, increases safety and helps preserve family relationships.
Without access to the community, I would expect a significant increase in dysregulation, distress and behaviours of concern.
The likely consequences would include:
• increased physical aggression
• increased risk of injury to family members and support staff
• increased property destruction within the home
• increased social isolation
• increased stress on the entire household
• reduced quality of life for all family members
• increased risk of caregiver burnout
• increased risk of family crisis and breakdown
These impacts would not be experienced by my son alone.
They would affect every person within our household.
My older son would experience increased restrictions on his ability to participate in age- appropriate activities and opportunities. My foster brother’s own support needs could become secondary to crisis management. I would become increasingly confined to the home and further isolated from my community, relationships and support networks.
The consequences of reducing community access supports are particularly significant for families supporting people with high and complex needs. Community participation
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2376
often functions as a preventative support that reduces the need for more intensive interventions later.
I am concerned that proposed reforms may result in community access being viewed primarily through a financial lens rather than through the lens of disability support, regulation, inclusion and safety.
When supports are assessed solely by their cost, there is a risk that their true value is overlooked.
Community participation is not simply about attending activities.
It is about maintaining wellbeing, reducing behavioural escalation, preventing isolation, supporting inclusion, preserving dignity and enabling people with disability to participate in ordinary life.
There is also a broader benefit to community participation that is often overlooked.
When people with significant disabilities are able to access their communities, the benefits do not flow only to the participant and their family. The wider community benefits as well.
My son is a valued member of our community. When he is supported to leave the home and participate in everyday life, people have the opportunity to see him as a person rather than as a diagnosis or a collection of support needs.
They see his personality, his strengths, his interests and the unique ways he engages with the world around him.
Over time, community members become familiar with him. Relationships develop. Understanding grows. Acceptance increases.
This creates communities that are more inclusive, more compassionate and more informed about disability.
I do not believe people with profound disabilities should be hidden away within the four walls of their homes because community participation is viewed as an optional expense.
My son has as much right to be present in his community as any other Australian.
His participation enriches not only his own life but also the lives of the people around him.
Community access creates opportunities for connection, understanding and belonging. It challenges misconceptions about disability and helps build communities where people are valued for who they are rather than excluded because of their support needs.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2376
The true value of community participation cannot be measured solely in financial terms. It should also be measured in human terms: inclusion, dignity, belonging, understanding and the contribution that people with disability make to the communities in which they live.
For many participants, including my son, community access is one of the very supports that prevents crisis from occurring.
I strongly urge the Committee to recognise that community participation is not an optional extra. It is an essential support that contributes directly to safety, wellbeing, inclusion and quality of life.
3.2 Increased Reliance on Informal Supports and Family Capacity
One of my greatest concerns regarding the proposed reforms is the increasing reliance on informal supports and assumptions about family capacity.
Throughout discussions surrounding the future of the NDIS, there appears to be an underlying assumption that families can absorb increasing levels of responsibility when formal supports are reduced, restricted or removed.
My lived experience tells me otherwise.
Families are not an unlimited resource.
As outlined earlier in this submission, I am an autistic AuDHD mother and primary caregiver supporting three NDIS participants with significant and competing support needs.
My role extends far beyond parenting or family support.
On any given day I may be coordinating support workers, behaviour support implementation, medical appointments, allied health services, school communication, transport, daily living supports, risk management, incident responses, bowel care routines, medication management and crisis prevention strategies.
This level of responsibility is not occasional.
It is constant.
It exists every day, across multiple people, across multiple systems and across multiple environments.
There is often a misconception that when family members provide support, that support is somehow free.
The reality is that informal care comes at a significant cost.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2376
The cost may not appear on an NDIS budget, but it is paid through caregiver exhaustion, financial disadvantage, social isolation, reduced workforce participation, relationship strain, declining health and diminished quality of life.
In my family’s circumstances, many of the supports currently funded by the NDIS are not replacing family care.
They are preventing family collapse.
Without appropriate supports, the consequences do not simply fall upon me.
They affect every person within the household.
My younger son would lose access to opportunities that support his development and wellbeing. My foster brother’s needs would become increasingly difficult to meet. Crisis management would begin to take priority over participation, growth and quality of life.
I am particularly concerned that the proposed reforms may underestimate the cumulative effect of caring for multiple people with disability simultaneously.
Each person I support has unique needs, risks, goals and support requirements.
Supporting one person does not reduce the needs of another.
In many cases, those needs compete for time, attention, resources and energy.
There is no point at which disability takes a break.
The support requirements continue regardless of whether family members are exhausted, unwell, overwhelmed or experiencing difficulties of their own.
I am also concerned that reforms may fail to recognise the practical limits of family capacity.
I am AuDHD and have my own support needs. However, my concern is not that I personally have a disability.
My concern is that no person, regardless of whether they have a disability, can be expected to absorb ever-increasing levels of disability-related responsibility indefinitely.
There appears to be an assumption within some policy discussions that families can continue to take on additional responsibilities whenever formal supports are reduced.
This assumption does not reflect reality.
The issue is not whether a family can manage in the short term during a crisis.
Most families will do whatever is necessary to keep their loved ones safe.
The real question is whether families can continue doing so safely, sustainably and indefinitely.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2376
The answer is NO.
Many families will do whatever is necessary to keep their loved ones safe.
That willingness should not be mistaken for unlimited capacity.
When formal supports are reduced, the burden does not disappear.
It is transferred.
Initially, it is transferred onto caregivers, siblings, family relationships and household stability.
However, when those informal systems eventually become overwhelmed, and they will, the burden is transferred again.
It is transferred to hospital emergency departments, mental health services, child protection systems, crisis response services, policing services, acute healthcare systems, education systems and other government-funded support systems.
These systems are often already operating under significant pressure and were not designed to replace disability supports.
In many cases, they become involved only after a crisis has occurred.
This creates a reactive system rather than a preventative one.
The NDIS was never intended to operate as a scheme of last resort after crisis occurs. It was intended to provide disability-specific supports that prevent crisis from occurring in the first place.
The NDIS was established because disability-related support needs are distinct from healthcare, crisis intervention, child protection and emergency response.
Its purpose was to provide the disability supports people require to live safely, participate in their communities and pursue meaningful and ordinary lives.
Reducing disability supports does not remove disability-related needs.
It simply shifts responsibility and costs elsewhere.
I am concerned that the proposed reforms risk creating greater long-term costs, greater pressure on other public systems and poorer outcomes for participants and families.
A sustainable NDIS should not be achieved by transferring disability-related responsibilities onto families or other government systems that are neither designed nor resourced to carry them.
I urge the Committee to ensure that any reforms properly recognise both the value and the limitations of informal care.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2376
The question should not simply be:
“Can families do more?”
The question should be:
“Should families be expected to carry more, and at what cost?”
For families such as mine, the answer to that question has profound implications for safety, wellbeing, sustainability and quality of life.
3.3 Rare Conditions, Individual Circumstances and Evidence Requirements
Another significant concern I have regarding the proposed reforms relates to the increasing emphasis on evidence requirements and the potential consequences this may have for participants with rare conditions and highly individualised support needs.
My youngest son has Mowat-Wilson Syndrome, a rare genetic syndrome.
Like many rare conditions, there is limited peer-reviewed research available, particularly regarding the practical realities of daily support needs, behavioural presentations, long- term outcomes and the effectiveness of specific interventions.
This is not because these needs do not exist.
It is because rare conditions, by their very nature, affect relatively small populations and often receive significantly less research attention than more common disabilities and health conditions.
I am concerned that any reforms which place increased emphasis on standardised evidence, published research or generalised disability frameworks may unintentionally disadvantage participants with rare and complex conditions.
My son’s needs cannot be understood through a diagnosis alone.
His disability is the result of the interaction between multiple factors, including his rare genetic syndrome, Autism Spectrum Disorder, intellectual disability, epilepsy, communication impairment, chronic medical needs and behavioural support requirements.
It is the cumulative impact of all of these disabilities and conditions working together that creates his support needs.
The reality of our family’s daily life is not determined by one diagnosis in isolation.
It is determined by the interaction between all of them.
No single research paper can adequately capture the complexity of his circumstances.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2376
No single diagnosis can fully explain the level of supervision, support, risk management and intervention required to keep him safe and well.
In situations such as ours, some of the most valuable evidence comes from sources other than published literature.
This includes:
• treating specialists
• allied health professionals
• behaviour support practitioners
• educators
• support workers
• family members
• years of direct observation and lived experience
Together, these sources provide a comprehensive understanding of what supports are required to keep my son safe, healthy and able to participate in daily life.
I am concerned that reforms may unintentionally elevate certain forms of evidence while diminishing the value of lived experience and clinical expertise.
Participants with rare conditions should not be disadvantaged because there are fewer published studies available about their disability.
The absence of extensive research should not be interpreted as an absence of need.
In many cases, families supporting people with rare conditions become the experts in that condition through necessity. They spend years observing patterns, identifying risks, trialling strategies and working alongside clinicians to understand what supports are effective.
This knowledge is valuable.
It should continue to be recognised and respected within NDIS decision-making processes.
The NDIS was designed to be person-centred.
That principle is particularly important for participants with rare conditions, complex presentations and highly individualised support needs.
I urge the Committee to ensure that reforms do not create barriers for participants whose needs may not fit neatly within standardised evidence frameworks.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2376
People with rare conditions deserve the same opportunity to access appropriate supports as any other participant, regardless of how much published research exists about their disability.
The NDIS should continue to recognise that lived experience, clinical expertise, functional impact and individual circumstances are often the most meaningful forms of evidence available when supporting people with rare and highly complex disabilities.
3.4 Prevention vs Crisis
A recurring concern throughout the proposed reforms is the risk that disability supports may increasingly be viewed as something that should only be provided once there is evidence of significant harm, deterioration or crisis.
I believe this approach is fundamentally flawed.
The purpose of disability supports should not be to respond after a crisis has occurred.
The purpose should be to prevent crisis from occurring in the first place.
One of the most challenging realities for families supporting people with significant disabilities is that successful preventative supports often become invisible.
When a support prevents a hospital presentation, a police response, a child protection intervention, a behavioural crisis, family breakdown or serious injury, it can be easy for decision-makers to conclude that the support was not necessary.
The reality is often the opposite.
The crisis did not occur because the support was working.
Many of the supports my family relies upon today exist because we have already experienced what happens when needs are not adequately recognised, understood or addressed.
Over many years I have learned that there is a significant difference between a person appearing stable and a person being safe.
Stability is often the result of intensive support, planning, supervision and intervention.
It should not be mistaken for evidence that those supports are no longer required.
My youngest son’s life provides numerous examples of why prevention matters.
He has a history of significant safety risks, including absconding from our family home during the night and remaining missing for several hours. He has substantial vulnerabilities associated with impaired danger awareness, communication difficulties, behavioural dysregulation and medical complexity.
Events such as these are not simply distressing for families.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2376
They carry genuine risks to life and safety.
I have also personally experienced the consequences of systems responding to the symptoms of unmet disability needs rather than the cause.
At one point, concerns were raised regarding my son’s wellbeing and care, resulting in involvement from child protection services.
The reality was not that my son lacked a committed caregiver.
The reality was that he was a child with profound and complex disability-related support needs whose needs exceeded the supports available to him and our family at the time.
The underlying issue was not neglect.
The underlying issue was inadequate disability support.
This experience reinforced for me how quickly unmet disability needs can become the responsibility of other government systems that were never intended to replace appropriate disability supports.
Rather than asking why families are struggling, there must also be consideration of whether families have been provided with the disability-specific supports required to safely meet the needs of the person they are caring for.
When disability support systems fail to respond early, other systems are often left to manage the consequences.
I have also experienced situations where concerns were raised repeatedly before serious consequences occurred.
In my son’s educational setting, concerns regarding safety, supervision, support implementation and risk management were repeatedly identified and communicated.
Despite those concerns being raised, significant problems continued to occur.
The eventual outcome was not improved safety.
The outcome was escalating distress, repeated incidents, injuries and a level of chronic stress that had profound consequences for our family.
One of the lessons I have learned through these experiences is that responding only after a situation has reached crisis point is rarely effective and almost always more costly.
The human cost is higher.
The emotional cost is higher.
The financial cost is often higher.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2376
The impact on participants and families is often long-lasting.
I am concerned that aspects of the proposed reforms may unintentionally encourage a system in which participants are required to demonstrate increasing levels of deterioration, risk or harm before support needs are recognised.
This creates the perverse situation where families are effectively required to prove crisis in order to access the supports that would have prevented the crisis from occurring.
For participants with complex disabilities, this approach is dangerous.
Supports such as community access, behavioural supports, support workers, capacity- building interventions and specialist disability supports are often preventative in nature.
Their success should not be measured by whether a crisis occurred.
Their success should be measured by the fact that a crisis did not occur.
While cost-effectiveness is an important consideration in any public system, there are some outcomes that cannot be meaningfully reduced to financial calculations alone.
The health, wellbeing, safety, dignity, inclusion and quality of life of people with disability have inherent value.
These outcomes are not simply budget items.
They are the very reason the NDIS exists.
A participant’s opportunity to live a meaningful and ordinary life, to be included in their community, to experience relationships, to feel safe and to have the same opportunities as other Australians cannot be measured solely by cost.
These outcomes should remain central to all decisions regarding the future of the Scheme.
The NDIS was established to improve outcomes, increase participation and support people with disability to live meaningful and ordinary lives.
It was not established to wait for preventable harm before assistance becomes available.
I urge the Committee to ensure that any reforms preserve a strong preventative approach to disability support.
Prevention protects participants.
Prevention protects families.
Prevention protects communities.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2376
And ultimately, prevention is one of the most cost-effective ways to ensure the long- term sustainability of the NDIS itself.
3.5 Participant Rights, Reviews, Appeals and Accountability
Another significant concern I have regarding the proposed reforms relates to participant rights, review mechanisms and access to independent decision-making processes.
I strongly believe that review and appeal rights are not optional features of the NDIS.
They are essential safeguards.
No government system should have the power to make decisions that profoundly affect a person’s safety, wellbeing, quality of life and future without those decisions being subject to review.
Accountability is not a weakness of a system.
It is one of its greatest strengths.
I am deeply concerned about any changes that may reduce, restrict or weaken a participant’s ability to challenge decisions regarding their disability supports.
For many participants and families, review processes are the only mechanism available when decisions do not accurately reflect a person’s actual needs.
My family is living proof of why these safeguards matter.
My youngest son has been an NDIS participant for many years.
Throughout that time, his plans have been reviewed repeatedly.
This has not occurred because I have sought supports beyond what is reasonable or necessary.
It has occurred because his plans have repeatedly failed to adequately reflect the reality of his disability-related support needs.
At no point have I sought reviews because I wanted more than my son required.
I sought reviews because he was not receiving the supports he needed to remain safe, participate in his community and live a meaningful and ordinary life.
The ability to challenge decisions has been one of the most important protections available to my family.
If review mechanisms had not existed, my son would have received significantly less support than he ultimately required.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2376
The consequences of that would not have been theoretical.
They would have affected his safety, wellbeing, participation and quality of life, as well as the wellbeing of every member of our household.
In many ways, my family has survived because review rights existed.
Those review rights provided a pathway to challenge decisions that did not accurately reflect need.
They provided accountability.
They provided oversight.
They provided an opportunity for evidence to be reconsidered.
I am currently involved in external review proceedings regarding my son’s supports.
This process is time-consuming, emotionally exhausting and financially costly.
Families do not undertake these processes because they are easy.
Most families undertake them because they believe there is no other option.
The reality is that many participants and families do not have the resources, knowledge, confidence or capacity to navigate complex review processes.
This makes it even more important that strong review rights remain available.
The answer to this problem is not to reduce accountability.
The answer is to improve decision-making while preserving the safeguards that protect participants when mistakes occur.
I am also concerned about any movement towards increasingly standardised or automated decision-making processes.
Participants with complex disabilities, rare conditions, communication impairments and highly individualised support needs cannot always be understood through standardised frameworks, data points or generic assumptions.
My youngest son’s needs are not defined by a single diagnosis.
They are the result of a complex interaction between multiple disabilities, medical conditions, risks, support requirements, family circumstances and functional impacts.
No automated process could fully understand the realities of his daily life.
Human judgement remains essential.
The more complex a participant’s circumstances are, the more important it becomes that decisions are made by people who can consider the full context of a person’s life.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2376
The NDIS was established as a person-centred scheme.
Person-centred decision-making requires more than policies and frameworks.
It requires listening to participants, families, clinicians and those who know the person best.
I urge the Committee to ensure that participant rights, review mechanisms and independent oversight remain central to the NDIS.
The power to review decisions is not a burden on the Scheme.
It is one of the protections that helps ensure the Scheme operates fairly, transparently and in accordance with its purpose.
We should never create a system that has the power to make life-changing decisions without meaningful accountability.
Strong review rights do not weaken the NDIS.
They strengthen it.
3.6 The Proposed Reforms Risk Undermining the NDIS’s Commitment to Ordinary Lives, Inclusion and Human Rights
One of my concerns regarding the proposed reforms is that the cumulative effect of these changes may gradually shift the focus of the NDIS away from supporting people with disability to live meaningful and ordinary lives and towards a narrower focus on cost containment, administrative efficiency and minimum levels of support.
I recognise the importance of ensuring the long-term sustainability of the NDIS.
However, sustainability should never come at the expense of the fundamental principles upon which the Scheme was established.
The NDIS was created because people with disability have the same rights as every other Australian.
The right to participate in their communities.
The right to develop relationships.
The right to pursue interests and goals.
The right to experience belonging.
The right to make choices about their lives.
The right to live meaningful and ordinary lives.
These principles are not optional extras.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2376
They are central to the purpose of the Scheme.
I am concerned that some of the proposed reforms may unintentionally result in disability supports being viewed through an increasingly narrow lens, where supports are assessed primarily according to cost rather than their broader impact on a person’s life.
This is particularly concerning for participants with significant disabilities and high support needs.
Historically, many people with profound disabilities were excluded from community life, segregated from society, hidden away from public view or denied opportunities that other Australians take for granted.
The NDIS represented a significant shift away from that approach.
It recognised that people with disability should not merely survive.
They should have the opportunity to participate, contribute, belong and be visible within their communities.
For my youngest son, this principle is incredibly important.
Without appropriate disability supports, his world becomes significantly smaller.
His opportunities become more limited.
His participation decreases.
His visibility within the community decreases.
His ability to experience an ordinary life becomes increasingly restricted.
This is not what the NDIS was intended to achieve.
My son has as much right as any other Australian to be present in his community, to access public spaces, to build relationships and to experience the world around him.
His life has value.
His participation has value.
His inclusion has value.
Importantly, the benefits of inclusion do not belong solely to the individual participant.
Communities also benefit.
When people with disability are visible within their communities, understanding grows.
Acceptance grows.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2376
Relationships develop.
Misconceptions are challenged.
Communities become more compassionate, inclusive and representative of the people who live within them.
I do not believe people with significant disabilities should be hidden away within the four walls of their homes because participation is considered too expensive or because supports that enable inclusion are viewed as less important than other forms of support.
The true success of the NDIS cannot be measured solely through budgets, expenditure figures or administrative efficiencies.
The health, wellbeing, dignity, inclusion, participation and quality of life of people with disability are not simply financial considerations.
They are the reason the Scheme exists.
Some outcomes cannot be meaningfully measured in dollars alone.
The opportunity for a person to feel safe, valued, connected, included and able to live a meaningful and ordinary life has intrinsic value.
As the Committee considers these reforms, I urge it to ensure that the NDIS remains firmly grounded in the principles of human rights, inclusion, participation and dignity.
The future success of the Scheme should not be judged solely by what it costs.
It should also be judged by the lives it enables people to live.
3.7 The Impact of the Proposed Reforms on Families, Siblings and Household Sustainability
One aspect of the proposed reforms that concerns me is the extent to which the broader impact on families may be underestimated.
While the NDIS is designed to support individual participants, the reality is that disability support decisions often affect entire households.
When appropriate supports are available, the benefits extend beyond the participant receiving them.
When supports are reduced, restricted or removed, the consequences also extend beyond the participant.
In my family’s circumstances, the impact of disability is experienced across an entire family system.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2376
I am the primary caregiver of three NDIS participants, each with their own complex, significant and competing support needs.
The wellbeing of one family member is often closely connected to the wellbeing of others.
When one person’s disability-related support needs are not adequately met, the consequences are rarely isolated to that individual.
The effects ripple throughout the household.
This can result in increased stress, reduced opportunities, social isolation, disrupted family relationships or complete relationship breakdown, increased caregiving demands, increased reportable incidents and reduced quality of life for multiple people at the same time.
What is often overlooked in discussions about disability supports is that when one person’s needs are not adequately met, other family members inevitably pay the price.
My oldest son, now an adult, grew up alongside a sibling with profound and complex disabilities. He witnessed the realities of disability, caregiving, crisis management and advocacy from a young age. Like many siblings of children with significant disabilities, he experienced a childhood that was very different from that of his peers.
My middle son continues to live with the reality that family resources, time, attention and opportunities are often influenced by the needs of others within the household. While he has his own disability-related support needs, often, opportunities, activities and family experiences are limited or not possible because the household is responding to crisis, risk or the intensive support needs of another family member.
My foster brother also has significant support needs that require ongoing attention, planning and support. His needs do not pause when another family member requires urgent intervention. They continue to exist alongside the needs of everyone else in the household.
This is the reality of supporting multiple people with disability within a single family. Disability support needs do not occur one at a time. They occur simultaneously.
When one person’s supports are reduced, restricted or inadequately funded, the consequences are rarely contained to that individual. The impact is felt across the entire household and can affect the wellbeing, opportunities, safety and quality of life of multiple people at once.
Reduced respite, community access and disability supports do not only affect disability-related outcomes. It also affects a person’s ability to maintain relationships, family connections and social participation. In my circumstances, the availability of appropriate supports is one of the few things that makes it possible to maintain
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2376
meaningful relationships outside my caregiving role. Without those supports, isolation increases and opportunities for connection diminish further.
This is one of the reasons I am concerned about reforms that may place greater pressure on families to absorb additional responsibilities.
Families are not made up of unlimited resources.
Siblings are not support systems.
Parents are not inexhaustible.
People with disability who live together do not become less disabled because another family member requires support.
Every person within a household remains entitled to safety, wellbeing, participation and the opportunity to live a meaningful and ordinary life.
I am particularly concerned that the cumulative impact of support reductions may be underestimated for families supporting multiple people with disability.
In my household, reductions to one person’s supports do not affect only one person.
They affect everyone.
When one person’s support needs are not adequately met, other family members often miss out on opportunities, activities, relationships, attention and support.
Over time, this can create significant and long-lasting impacts on siblings, caregivers and family functioning.
The NDIS has played an important role in helping families like mine create stability where stability would otherwise be difficult to achieve.
While the Scheme rightly focuses on participants, I believe reforms should also recognise that disability support decisions can have significant consequences for family sustainability and household wellbeing.
Supporting a participant effectively often protects the wellbeing of many other people at the same time.
When families remain stable, everyone benefits.
When families break down, everyone is affected.
I urge the Committee to consider not only the impact of these reforms on individual participants, but also their impact on the families who support them and the households in which they live.
Disability does not occur in isolation.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2376
The effects of disability support decisions do not occur in isolation either.
3.8 High-Complexity Participants Cannot Be Supported Through One-Size-Fits-All Approaches
A further concern I have regarding the proposed reforms is the risk that increasing standardisation within the Scheme may unintentionally disadvantage participants with the highest and most complex support needs.
Many of the proposed changes appear to be aimed at creating greater consistency, predictability and sustainability across the NDIS.
While these goals are understandable, I am concerned that highly complex participants may be disproportionately affected when systems become increasingly reliant on standardised approaches, general assumptions or broad funding frameworks.
My youngest son is an example of why individualised decision-making remains essential.
He has Mowat-Wilson Syndrome, a rare genetic syndrome, as well as Autism Spectrum Disorder, intellectual disability, epilepsy, significant communication impairment, chronic constipation requiring daily invasive bowel irrigation and complex behavioural support needs.
He is non-verbal and requires intensive supervision and support throughout every day.
His support needs cannot be understood through any single diagnosis.
They cannot be understood through a checklist.
They cannot be understood through a standard funding model.
They cannot be understood through comparison with an average participant.
His support needs arise from the interaction of multiple disabilities, medical conditions, risks and functional impairments that affect every aspect of daily life.
The reality is that participants with highly complex needs often fall outside standard categories.
Their needs are frequently more intensive, more variable and more individualised than those of the broader participant population.
This does not make their needs less legitimate.
If anything, it makes careful individual assessment even more important.
I am concerned that aspects of the proposed reforms may unintentionally create barriers for participants whose circumstances do not fit neatly within standardised frameworks.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2376
For participants like my son, small reductions in support can have disproportionately large consequences.
A reduction in support is not simply a reduction in hours.
It may mean increased risks to safety.
It may mean increased behavioural escalation.
It may mean reduced community participation.
It may mean increased family stress.
It may mean increased pressure on healthcare, education, child protection and other government systems.
For highly complex participants, support needs are often interconnected.
Removing support in one area frequently creates consequences in many others.
This is why decisions regarding participants with complex needs must continue to be based on individual circumstances, functional impact and evidence from the people who know them best.
I am also concerned that broad assumptions regarding family capacity, community supports or alternative service systems may fail to recognise the realities faced by participants with profound disabilities.
Families supporting highly complex participants are often already operating at the limits of what is sustainable.
There is rarely unused capacity available to absorb additional responsibilities.
The NDIS was designed as an individualised scheme because disability is individual.
Participants with the most complex needs require a system that is capable of recognising complexity rather than attempting to simplify it.
I urge the Committee to ensure that any reforms preserve the ability of the NDIS to make genuinely individualised decisions based on the specific circumstances of each participant.
Participants with rare, complex and high-intensity support needs should not be disadvantaged because their circumstances are more difficult to fit within standardised frameworks.
The true test of any disability support system is not how well it serves the average participant.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2376
It is how well it serves those whose needs are the most complex, intensive and difficult to meet.
Those participants deserve the same opportunity to live meaningful and ordinary lives as every other Australian.
3.9 The Cost of Underfunding is Greater Than the Cost of Support
A recurring theme throughout the proposed reforms is the need to improve the long- term sustainability of the NDIS.
I support the goal of sustainability.
However, I am concerned that discussions regarding sustainability often focus on the cost of providing supports without adequately considering the cost of failing to provide them.
In my experience, underfunding disability supports does not eliminate need.
It simply relocates the consequences.
The support needs remain.
The risks remain.
The disability remains.
The question is not whether those needs will be met.
The question is who will ultimately bear the cost when they are not.
Throughout this submission I have described examples of what can occur when disability-related support needs are not adequately recognised or addressed.
The consequences can include increased behavioural escalation, increased reportable incidents, injury, property destruction, social isolation, family breakdown, reduced community participation, school disengagement, increased pressure on healthcare systems, involvement from child protection services, police responses and other crisis- driven interventions.
None of these outcomes are cost-free.
In many cases they are significantly more expensive than the preventative supports that may have avoided them.
My family has experienced firsthand the reality that inadequate disability supports often create costs elsewhere.
Those costs may be borne by hospitals.
They may be borne by schools.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2376
They may be borne by child protection systems.
They may be borne by policing services.
They may be borne by mental health services.
They may be borne by carers, siblings and families.
But they are borne somewhere.
The idea that reducing disability supports automatically creates savings is, in my view, an oversimplification.
What often occurs instead is cost shifting.
Responsibility is transferred from a disability support system specifically designed to meet disability-related needs to systems that are responding after problems have already escalated.
This approach is rarely efficient.
It is rarely effective.
And it is rarely humane.
I am also concerned that the financial costs associated with review processes, reassessments, repeated planning meetings and ongoing disputes are often overlooked.
When participants and families repeatedly need to challenge decisions because supports do not reflect actual needs, this creates additional costs for participants, the NDIA and the broader system.
A more effective approach is to make accurate, person-centred decisions as early as possible and ensure that participants receive the supports they genuinely require.
The most sustainable system is not necessarily the one that spends the least.
The most sustainable system is the one that achieves the best outcomes while preventing avoidable harm, crisis and escalation.
While cost-effectiveness is important, the value of disability supports cannot be measured solely through financial calculations.
The health, wellbeing, dignity, safety, participation and quality of life of people with disability have inherent value.
These outcomes are not simply expenses.
They are investments.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2376
Investments in people.
Investments in families.
Investments in communities.
Investments in long-term stability.
I urge the Committee to carefully consider not only the cost of providing disability supports, but also the far greater cost that can arise when those supports are absent, delayed or inadequate.
The true cost of underfunding is rarely found in a budget line.
It is found in the consequences that follow.
It is also important that discussions regarding the sustainability of the NDIS acknowledge the significant economic contribution the Scheme makes to Australia.
Public discussion often focuses on the cost of the NDIS, but far less attention is given to the economic activity, employment and workforce participation that the Scheme supports.
The NDIS is not simply an expense.
It is also a major contributor to Australia’s care and support economy.
The Scheme supports employment for disability support workers, allied health professionals, behaviour support practitioners, support coordinators, therapists, educators and many other workers whose roles exist because people with disability require support to participate in everyday life.
The NDIS also enables many family members and carers to participate more fully in employment, education and community life because they are not required to carry the full burden of disability support alone.
In discussions about sustainability, it is important that both sides of the equation are considered.
The economic contribution of the NDIS, the jobs it supports, the workforce participation it enables and the broader social value it creates should form part of any assessment of the Scheme’s long-term impact.
A sustainable NDIS should not be viewed solely through the lens of expenditure.
It should also be understood as an investment that generates social, economic and community benefits across Australia.
3.10 Nothing About Us Without Us – The Importance of Genuine Co-Design
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2376
One of my strongest concerns regarding the proposed reforms is the extent to which people with disability, their families, carers and those with lived experience are meaningfully involved in the design, implementation and evaluation of changes to the NDIS.
The disability community is not simply a group of service users.
We are the people who live with the consequences of these decisions every day.
People with disability, families, carers and advocates possess knowledge and expertise that cannot be obtained through policy documents, financial modelling or administrative data alone.
Lived experience is expertise.
I strongly believe that any significant reforms to the NDIS should be genuinely co- designed with people with disability and those who support them.
The principle of “Nothing About Us Without Us” has long been recognised within disability rights movements both in Australia and internationally.
It reflects a simple but important truth:
People with disability should not be excluded from decisions that directly affect their lives.
Meaningful consultation is not the same as co-design.
Seeking feedback after decisions have effectively been made is not the same as involving people in developing solutions from the outset.
People with disability and families are uniquely placed to identify unintended consequences, practical implementation challenges and alternative approaches that may not be visible to policymakers.
This is particularly important because disability is not a single experience.
The disability community is incredibly diverse.
Participants have different diagnoses, support needs, communication styles, cultural backgrounds, living arrangements, family structures and goals.
What works for one participant may be entirely inappropriate for another.
This diversity is precisely why lived experience must be included in reform discussions.
Policies developed without adequate input from those directly affected risk creating unintended harms, gaps in support and outcomes that fail to reflect the realities of everyday life.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2376
Many of the concerns raised throughout this submission are examples of issues that people with disability, families and carers are able to identify because we experience them firsthand.
We understand the practical realities.
We understand the consequences when systems fail.
We understand the difference between what appears effective on paper and what actually works in practice.
I urge the Committee to ensure that people with disability, families, carers and representative organisations remain central to all future NDIS reform processes.
Co-design should not be viewed as an optional extra.
It should be viewed as an essential safeguard against poor policy outcomes.
The voices of people with disability must not merely be heard.
They must be listened to.
And they must influence the decisions that are ultimately made.
Nothing About Us Without Us should remain a guiding principle of all future NDIS reform.
- Recommendations
Based on my lived experience as the primary caregiver of three NDIS participants with significant and competing disability support needs, I respectfully recommend that the Committee:
Recommendation 1
Ensure that community access and community participation supports continue to be recognised as essential disability supports and are not reclassified, restricted or reduced on the basis that they are recreational, discretionary or lifestyle supports.
Recommendation 2
Ensure that participants with profound, complex and lifelong disabilities continue to have access to the level of support required to safely participate in their communities, maintain relationships, regulate their behaviour, and experience meaningful and ordinary lives.
Recommendation 3
Preserve the individualised nature of the NDIS and ensure that participants with rare conditions, high-intensity support needs and complex presentations are not
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2376
disadvantaged by standardised funding approaches, generic frameworks or one-size- fits-all decision-making.
Recommendation 4
Continue to recognise lived experience, functional impact, treating clinician evidence, allied health assessments and long-term observations as important forms of evidence when determining disability support needs.
Recommendation 5
Ensure that participants with rare genetic conditions and uncommon disabilities are not disadvantaged by limited peer-reviewed research or standardised evidence requirements.
Recommendation 6
Maintain a strong focus on prevention by ensuring participants can access supports that reduce the likelihood of crisis, behavioural escalation, family breakdown, hospitalisation and involvement from other government systems.
Recommendation 7
Ensure that reforms do not rely upon assumptions that families, carers or informal supports can absorb increasing disability-related responsibilities indefinitely.
Recommendation 8
Require decision-makers to consider the broader impact of disability support decisions on family sustainability, sibling wellbeing, household functioning and long-term caregiving capacity.
Recommendation 9
Preserve strong participant rights to internal review, external review and independent appeal processes so that participants and families can challenge decisions that do not accurately reflect need.
Recommendation 10
Ensure that any use of automated or standardised decision-making processes includes meaningful human oversight and individual consideration, particularly for participants with complex or high-risk support needs.
Recommendation 11
Ensure that legislative reforms remain consistent with the original purpose of the NDIS by supporting people with disability to live meaningful and ordinary lives, participate in their communities and experience the same opportunities as other Australians.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2376
Recommendation 12
Recognise that reducing disability supports does not eliminate disability-related need, but often transfers costs and responsibilities onto families, hospitals, education systems, child protection systems, mental health services and other government- funded services.
Recommendation 13
Consider the broader economic contribution of the NDIS, including workforce participation, employment creation, support for the care economy and the prevention of more costly crisis-driven interventions.
Recommendation 14
Ensure that people with disability, family carers, nominees, advocates and lived- experience experts are meaningfully involved in the design, implementation and evaluation of future NDIS reforms in accordance with the principle of “Nothing About Us Without Us.”
Recommendation 15
Assess all proposed reforms against a central question:
“Will this change improve or diminish the ability of people with disability to live safe, meaningful and ordinary lives?”
Where there is a significant risk of harm, exclusion, isolation, reduced participation or poorer outcomes, additional safeguards should be implemented before reforms proceed.
- Closing Statement
Thank you for the opportunity to provide this submission.
I have made this submission not only as a caregiver, but as someone who has spent many years navigating the realities of supporting people with significant disability every day.
I am the primary caregiver of three NDIS participants with complex and competing support needs.
My youngest son lives with Mowat-Wilson Syndrome, Autism Spectrum Disorder, intellectual disability, epilepsy, significant communication impairment, chronic constipation requiring daily invasive bowel irrigation and complex behavioural support needs. He requires intensive support and supervision throughout every day and will continue to require substantial support for the remainder of his life.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2376
My middle son lives with Autism Spectrum Disorder, ADHD and Oppositional Defiant Disorder.
My foster brother lives with Autism Spectrum Disorder, intellectual disability and diabetes and requires substantial daily support to maintain his health, wellbeing and participation within the community.
I am also autistic and AuDHD.
Everything contained within this submission is based on lived experience.
These are not theoretical concerns.
These are concerns grounded in years of navigating disability systems, advocating for supports, responding to crises, coordinating services and working every day to ensure the people I care for have the opportunity to live safe, meaningful and ordinary lives.
I support the long-term sustainability of the NDIS.
I support accountability.
I support ensuring that public funds are used responsibly.
However, I am concerned that aspects of the proposed reforms may unintentionally create greater barriers for participants with the highest and most complex support needs.
I am concerned about reforms that may increase reliance on informal carers, reduce access to preventative supports, restrict community participation, disadvantage people with rare conditions, weaken review rights or increase the use of standardised approaches that fail to recognise individual circumstances.
The people most affected by these decisions are often the people least able to advocate for themselves.
My youngest son cannot explain his support needs to a planner.
He cannot describe the consequences of inadequate supports.
He cannot advocate for his own safety, wellbeing, inclusion or future.
Others must do that on his behalf.
That responsibility is one I take seriously.
Families like mine are often the only voice many profoundly disabled people have within policy discussions such as these. That is why lived experience must remain central to NDIS reform.
The NDIS has changed the lives of many Australians for the better.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2376
It has enabled people with disability to participate in their communities, develop relationships, pursue goals and experience opportunities that previous generations were often denied.
I hope that as these reforms are considered, the Committee remains focused on the people whose lives will ultimately be shaped by these decisions.
The success of the NDIS should not be measured solely by what it costs.
It should also be measured by what it makes possible.
It should be measured by the opportunities it creates.
The lives it improves.
The families it supports.
The crises it prevents.
The dignity it protects.
And the meaningful and ordinary lives it enables people with disability to live.
I respectfully ask the Committee to ensure that any reforms preserve these principles and continue to place the rights, wellbeing, participation and humanity of people with disability at the centre of the Scheme.
Thank you for considering my submission.