Submission to the Senate Community Affairs Legislation Committee

Submitted by

Role Mother, primary carer and advocate for and Recommendation The Bill should not be passed in its current form. Request I request the opportunity to appear before the Committee and speak to my lived experience, with my son’s voice included in a safe and appropriate way. Publication / privacy This submission contains sensitive personal and medical information about children. I ask the Committee to treat it sensitively and contact me before publishing identifying details if redaction or name-withholding is available. Date 28th May, 2026

Dear Committee Secretary and Members of the Committee My name is . I am the mother, primary carer and advocate for my two children, and , who are both NDIS participants. I am writing as a mother who lives every day with the reality that NDIS decisions are not abstract policy decisions. They decide whether my children are safe. They decide whether our family remains together and stable. They decide whether I can keep caring, keep working, keep advocating and keep my children out of crisis. I respectfully ask the Committee to recommend that the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 not be passed in its current form. I understand that the Committee has invited submissions that address the provisions of the Bill. I also understand that personal experience is welcome where it explains how the provisions may operate in real life. That is what I am trying to do. I want the Committee to see what these provisions may mean for a family at the severe and complex end of disability support needs. I understand the need to protect the NDIS. Families like mine need the NDIS to survive. We also need fraud, exploitation, sharp practices and unsafe providers to be addressed. But a scheme is not protected by making it harder for profoundly disabled people to receive support, harder for families to request reassessment when life changes, easier to reduce supports, easier to suspend plans, and easier for administrative systems to override lived reality. That does not secure the NDIS for future generations. It risks abandoning the people and families the NDIS was created to protect.

My family’s reality My son is almost 15 years old, almost 6ft tall and 98kg. He lives with a profound and complex disability. He has Level 3 Autism Spectrum Disorder with severe communication impairment, moderate intellectual disability, significant anxiety with rigid and self-injurious behaviours, complex ties and motor stereotypies, challenging behaviours since adolescence including aggression when overwhelmed,

Restricted Diet and Feeding Risks

restricted diet and feeding risks, chronic sleep disruption, and a history of congenital skull defect with cranioplasty. also presents with severe rigid, OCD-like patterns and oppositional or ODD-type behaviours that can be misunderstood by systems as refusal or poor behaviour. In our home, these are disability-related presentations. They are part of how his autism, intellectual disability, anxiety, communication impairment and sensory dysregulation show up in daily life.

On 18 May 2026, Consultant Paediatrician reviewed and described him as having “high complex care needs”. He noted that requires constant supervision and prompting for all activities of daily living. He confirmed that requires immediate adult supervision with feeding, bathing and toileting, and that his current NDIS supports are clearly inadequate given the severity of his care needs, which will be lifelong. is not a small child. At that review he was 179.5 centimetres tall and 98.5 kilograms. He has always been in the 99th percentile for his age. When he is dysregulated, overwhelmed, anxious or unsafe, the risk is immediate and serious. His behaviours are not malicious. They arise from severe disability-related impairments in communication, judgement, impulse control, anxiety, sensory processing and understanding of danger. In practical daily-care and safety terms, his cognitive ability is comparable to that of a two-year-old, but he is in the body of a large adolescent.

Recently, I left the bathroom briefly and returned to find face down in the bath. That is the level of risk we live with. This is not theoretical. It is not ordinary parenting. It is a nearly 15-year-old boy who can become unsafe in the bath within moments. has recently had a meal time assessment which shows a 75% chance of choking on his food. Not long ago he snuck a kiwi fruit he was eating into his bedroom and then I saw him run to the bathroom where I found him choking, turning blue trying to dislodge the fruit from his throat. He is so big, I was unable to do a Heimlich maneuver (which is no longer best practice) and I was only just lucky enough to have the strength to use the 5“ and 5“ method. Soon he will be too big for me to control him to enable that method too. How many typical parents still have to monitor their 15yo son eating something simple like a piece of fruit? Is that reasonable?

I still have to help him dress each day, brush his teeth for him, adjust his clothes and often have to wipe ’s bottom when he goes to the toilet. Each day for today and the rest of his life I will have to supervise bathing, hygiene, dressing, meals, transitions, transport, community access and emotional regulation. I still and always will, have to manage choking risk because he has poor food pacing and requires feeding supervision. I still and always will have to manage early waking, chronic sleep disruption and the exhaustion that comes with beginning the day at 4.30am (sometimes if I’m lucky it’s a sleep in to 5.30 am) after already carrying a full day of care 7 days per week.

At what point does the NOIA accept that this is beyond ordinary parental responsibility? At what point does a planner look at a mother still wiping her nearly 15-year-old son after toileting, teaching him all the things fun teenage tricks his body is doing at this age - that he doesn’t understand and to be honest, most almost 15yr old boys would be MORTIFIED for their mother to be teaching them about, whilst still supervising him to prevent drowning in a bath, still managing feeding risks, still protecting another disabled teen child in the same home, and say: this family needs more support, not more scrutiny? ’s current NDIS plan is $130,495.28 over two years. That is approximately $65,247.64 per year, or less than $180 per day, for a child with lifelong disability who requires immediate adult supervision across daily living, personal care, feeding, bathing, toileting, community access, transport and safety.

On paper, that amount may sound large to someone who does not live our life. In reality, it is a small amount compared with the level of support required across two years of profound disability. It is not support for convenience. It is support for safety, dignity, personal care, behaviour, family preservation and crisis prevention.

At the time of Dr ’s review, ’s supports included weekly physiotherapy and one evening per week of support worker assistance. Our family had no respite. Dr specifically recorded that the family urgently needs review of support services, including additional regular home supports and respite.

is also disabled and also needs to be protected My daughter is 16 and is also an NDIS participant. She lives with Autism Spectrum Disorder Level 2, ADHD and sensory processing difficulties. has her own disability, her own needs, her own dignity and her own future. But is constantly affected by the intensity of ’s support needs. When ’s supports are unstable, suffers. When we are in crisis, withdraws. When I am forced to manage without sufficient support, misses out. She is too often the quiet child in the background of a household shaped around risk and survival. I watch her shrink into herself and slowly isolate herself from our family because of her brother. The NDIS must understand the whole family impact of severe disability. If ’s plan is inadequate, ’s safety and wellbeing are also affected. If supports are harder to access, reduced, delayed, suspended or administratively burdened, the harm is not limited to one participant. It spreads across the family.

There is no informal support network behind us Government systems often speak about “informal supports” as though every family has a hidden safety net. We do not. My closest family member who desperately wants to help us is my darling father, . He lives in New Zealand. He loves us deeply and wants to move to Australia to support us. He sees what we are living through. He sees the exhaustion, the fear, the constant strain, and the fact that we are trying to hold together a family under circumstances most people could not imagine. But immigration is complex, expensive, uncertain and overwhelming. Even though my father wants to come here and help us, that is not something our family can simply make happen. It is not a practical or reliable substitute for disability support. It is not a contingency plan that the NDIS can assume exists. There is no grandparent around the corner who can practically or are physically capable to step in. There is no relative who can safely take over ’s care. There is no extended family safety net that can take overnight, help me recover, support
or give and me any kind of break. I do have an auntie who lives approximately two hours away. She loves , but she is over 70 years old, physically small, and understandably too frightened of the practical risks to care for him on her own in any capacity. This is not a criticism of her. It is the reality of asking an elderly relative to manage a nearly 15-year-old boy who is physically large, profoundly disabled, unpredictable when dysregulated, at risk of absconding, and dependent on others for intimate personal care.

I also have three close friends who love us and whom I trust as people. They would like to help. They have good intentions. But they do not have the ability to safely cope with ’s support needs. They are too scared to care for him without me there, because he is too big, his behavior can be unpredictable, and they know they would not be able to manage if something went wrong.

When was little and small enough to physically guide, carry or contain, people tried to help. But even when he was small it was too much and now that he has become physically bigger - once he was over about 5 foot 2 - that offer of informal help disappeared. It did not disappear because people stopped loving him. It disappeared because the risk became too great for untrained people.

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We tried relying on goodwill before, just 5 minutes watching him on a kids jumping castle at our local surfclub. absconded and was found10minutes later having taken a stranger’s food and running 100m down the beach heading to the waters edge unsupervised. That is the reality. Good intentions, when people are ill-equipped, can lead to catastrophic events. For most families, babysitting is an ordinary option. For families like mine, there is no option to simply get a babysitter. There is no casual person who can safely step in.

It breaks my heart to hear people I love say they are frightened of caring for . is not a monster. He is my boy. He is a child with profound disability who needs skilled, trained and properly funded support. The fact that people are frightened does not mean he is bad. It means ordinary informal support is not safe or realistic for him.

The people who truly understand this level of disability because they live it themselves are usually too far away, too exhausted by their own families, or carrying the same kind of impossible load. I cannot shift our burden onto another family already surviving their own crisis. Nor should the NDIS assume that families like mine can patch together safe care from goodwill, friendship and fear.

There is just us. And that is why the NDIS is not optional for families like mine. It is the structure that prevents collapse. I am a working mother, but I cannot work away from home I am a working mother and I work from home. I could never safely work away from the house. My children’s needs do not fit around ordinary employment, ordinary family life, or ordinary assumptions about resilience. I am the mother, the carer, the advocate, the person wiping, washing, supervising, preventing, calming, documenting, requesting, appealing, chasing providers, protecting , supporting and trying to keep working because our family still needs income. Please do not assume that because I keep going, I am coping. I keep going because I have no choice. My husband ’s role and his upcoming surgery My husband is the . Professionally, he delivers seniors living and aged care communities, including retirement living, community facilities, residential aged care, dementia care, high-care and palliative care environments. In his professional life, helps create communities built around a continuum of care. That means designing and delivering places where people can age in place, where support increases as a person’s needs increase, and where care is planned, structured and built into the environment rather than left to chance. The projects he manages professionally can range from approximately 50 units to 800 units and from $50 million to $1.5 billion in value. These figures relate to his professional responsibilities, not resources available to our family. His professional world understands that vulnerable people need proper planning, safe environments, skilled support, continuity, risk management and care systems that do not collapse when needs become complex. That is what makes our own family situation so painful. spends his professional life helping build care communities for older Australians, including people living with dementia, high-care needs and palliative care needs. Yet in our own home, with two disabled children and one child with profound, severe and complex needs, we are constantly fighting for

The Very Things Any Proper Care System Should Understand

The very things any proper care system should understand: continuity, safety, planning, dignity, skilled support and a backup plan when things go wrong.

is having a hip replacement on 2 June 2026. This is not a minor detail. After surgery, he will not be able to safely chase if he absconds. He will not be able to quickly intervene if becomes unsafe. He will not be able to lift, redirect, block, physically support or manage the level of risk that can arise in our home within seconds.

This is not because is unwilling. It is because the physical reality of our family’s care needs is beyond what any parent should be expected to manage without proper funded support.

A father awaiting hip replacement is not a sustainable backup plan.

Families like ours are the severe and complex cohort the NDIS must not fail

I believe our family sits within the less-than-one-per-cent cohort of severe and complex disability families. Whether that is described statistically as less than one per cent or simply as the extreme end of support need, the point is the same: laws must be designed with families like ours in mind. We are not an ordinary family asking for ordinary help. We are a family with two disabled children, one child with profound and lifelong support needs, serious safety risks, no meaningful informal support, a father about to lose physical capacity through major surgery, and a mother working from home because she cannot safely leave the house. The NDIS must be strong enough to hold the families at the edge, not only the participants who are easier to administer.

We are stared at, judged, and then forced to keep proving the obvious Everywhere we go, we are stared at and ogled. We know we are not the norm. We do not need strangers, planners, politicians or systems to remind us that our family looks different. But this is our normal. This is our family life. This is my son and my daughter.

’s disability is visible in the way he moves, communicates, regulates, reacts and needs support. We live with the public gaze. We live with people watching us, judging us, avoiding us, fearing what they do not understand, and sometimes staring at our family as though we are a public spectacle rather than a mother, father, daughter and son trying to get through an ordinary day.

Then, after living with that visibility and vulnerability, we are subjected to harsher scrutiny and impossible standards by the very system that says it exists to provide equity, equality, inclusion and an ordinary life.

Where is the equity if families like mine must keep proving what is already obvious, permanent and lifelong? Where is the equality if our children’s disability is only accepted after we produce yet another report, letter, assessment or specialist opinion? Where is the ordinary life if our family spends precious time, money and energy documenting disability instead of living around it safely?

Why are we repeatedly sent back to doctors, paediatricians, specialists, therapists and assessors when is not sick in the ordinary sense? is disabled. We are not seeking a cure. We go because the NDIS keeps demanding verification of significant, permanent and lifelong disability that is already known, diagnosed, documented and lived every hour of every day.

It feels like an insatiable demand to prove, and re-prove, what every clinician, teacher, therapist and parent already knows. It turns lifelong disability into an endless administrative test. It forces families to

Why this Bill frightens me

This is our normal. It is not a performance. It is not exaggeration. It is not a crisis invented for an NDIS review. It is the ordinary life of a family raising children with significant, permanent and lifelong disability.

Why this Bill frightens me

The Bill speaks about functional capacity, plan reassessments, impairment links, support determinations, plan renewal, reasonable and necessary supports, plan suspensions, permanence, other service systems, fraud measures, record keeping, pricing, automation and new framework planning. To some people, those words may sound administrative. To families like mine, they are the difference between support and collapse.

Schedule 1, Part 1: Functional capacity must not become a blunt tool

I support fair, evidence-based assessment. But I am deeply concerned that functional capacity assessment could become a blunt tool that fails to understand complex disability. ’s disability is not simple. His size can make him appear more capable than he is. His moments of progress can be misunderstood as independence. The fact that he can sometimes follow a simple instruction does not mean he is safe. The fact that he is continent does not mean he can manage toileting hygiene. The fact that he can shower with prompting does not mean he is safe in the bathroom. The fact that he can use short scripted phrases does not mean he has functional communication. Any assessment must include clinical evidence, school evidence, allied-health evidence, carer evidence and lived reality. It must be conducted by people who understand profound autism, intellectual disability, communication impairment, anxiety, sensory dysregulation and behaviours of concern. It must not be reduced to a short appointment or a standardised score.

Schedule 1, Part 2: Unscheduled reassessment must remain available before families collapse

The Bill would tighten the criteria for unscheduled plan reassessments. This is frightening for families like mine.

Schedule 1

Part 3: Complex disability cannot be split into neat impairment boxes

I am concerned about strengthening the link between a participant’s eligible impairment and the supports funded if this is applied rigidly.

s needs arise from the combined effect of autism, intellectual disability, communication impairment, severe anxiety, rigid behaviours, sensory dysregulation, sleep disruption, motor ties, feeding risk and behavioural complexity. In real life, these cannot be separated into neat diagnostic boxes. A rigid approach risks forcing families to prove which diagnosis caused which support need, instead of looking at the person in front of them. The support need should be assessed by functional reality.s requires immediate adult supervision because of the whole impact of his disability.

Part 4: Social, community and capacity-building supports are not luxuries

The Bill would allow Ministerial determinations to reduce funding for groups of supports, including social, civic and community participation and capacity-building daily activities. For my children, these supports are not optional extras. For s, supported community access is how he practises safety, regulation, transitions, communication, tolerance of change and being in the world without harm to himself or others. For `, community participation is part of preventing isolation and helping her live as more than the sibling of a profoundly disabled brother. Reducing these supports risks trapping disabled children and families inside the home. It risks increasing isolation, behaviour escalation, carer burnout and crisis presentations. That is not sustainability. It is cost-shifting.

Part 5: Unspent funds should not automatically be treated as unnecessary funds

The Bill would introduce plan end dates and provide that unspent funds from a previous plan will not carry over to the renewed plan. Families with complex disability do not spend funds neatly. Workers get sick. Providers cancel. Behaviour may make a support impossible for a period. The right therapist may not be available. The market may not have appropriate skilled workers. Families may be too exhausted to coordinate everything. Funds may be held for planned intensive support, school holiday risk, respite, equipment, therapy blocks, dental or medical procedures, or major transitions. Unspent funds do not always mean supports were not needed. Sometimes they mean the market failed. Sometimes they mean the family was drowning in care and administration. Families should not be punished for that.

Schedule 1

Part 6: Sustainability must not override individual need

I understand that the NDIS must be sustainable. But sustainability cannot mean that the families with the highest support needs are expected to absorb more risk.

The primary question should remain: what does this participant need because of disability to be safe, supported, included and able to live with dignity?

If scheme sustainability becomes a reason to reduce support below what is actually required, then it is not sustainability. It is harm deferred into families, hospitals, schools, child protection, police, mental health systems and crisis accommodation.

Schedule 1

Part 7: Plan suspension would be devastating for families in crisis

The Bill would allow the NOIA to suspend a plan where contact attempts have been made and an adequate response has not been provided, and could allow participant status to be revoked after a period of suspension if contact has not been made.

Please understand what this means in real family life.

A parent might miss letters because they are managing crisis. A carer might be in hospital. A family might be dealing with surgery, sleep deprivation, school crisis, family violence, homelessness, mental health stress, language barriers, disability, email failure, provider collapse or sheer exhaustion. A participant may be unable to respond because of cognitive or communication disability.

Suspending a plan because a family did not respond adequately risks punishing the most overwhelmed families first.

No plan should be suspended for non-response unless there has been genuine, repeated, disability-informed, human contact through multiple methods, including contact with known nominees, carers, support coordinators and advocates, and specific safeguards for children and people with intellectual or communication disability.

Schedule 1

Part 8: Permanent disability should not have to be proved again and again

I am concerned about tightening the meaning of permanence where an impairment can be treated. ’s autism, intellectual disability, severe communication impairment and lifelong functional dependence do not disappear because he receives therapy, medication, behavioural strategies, exercise, diet support or routines. Treatment may improve function and reduce risk. It does not remove the underlying disability or the need for support.

Families like mine have already spent years proving disabilities that are permanent and significant. Disability support is not the same as medical treatment. The fact that we continue to seek every possible support for does not mean his disability is temporary.

For established lifelong disability, repeated specialist verification should not be the default. Fresh evidence should be required only where there is a genuine and specific reason, not simply because a plan cycle has ended or a planner wants another letter. Otherwise the Scheme wastes Medicare, specialist time, family money and carer capacity on proving permanent disability that has already been proved.

Schedule 1

Part 9: Other service systems must be real, not theoretical

I am also concerned about eligibility being affected by access to other service systems. Other systems often exist on paper but not in practice. Education, health and community services are stretched. Schools do not provide daily disability support. Health services do not provide ongoing

Schedule 2: Fraud measures must target exploitation, not crush families

I support action against fraud. Fraud harms participants and families. Unsafe providers, sharp practices, over-servicing, inflated costs and misuse of funds must be addressed. But fraud control must not turn self-managing families and exhausted carers into suspects. Record-keeping obligations, civil penalties, debts and 90-day claim timeframes may be manageable for large organisations with finance teams. They are much harder for a mother managing two disabled children, no respite, sleep deprivation, personal care, school issues, medical appointments, providers, work and constant safety risk. Families acting in good faith need plain-English guidance, administrative support, grace periods, proportionality and the ability to correct genuine mistakes without being treated like fraudsters. I also support stronger safeguards for participants most at risk of abuse and exploitation. requires support from people who are skilled, safe and properly screened. But registration changes must not shrink already thin markets or remove the few workers who can safely support complex participants.

A mother working from home because she cannot safely leave the house is not evidence that the family

is coping. It is evidence that the family is doing everything possible to prevent collapse. Please do not call the Scheme sustainable if sustainability is achieved by pushing risk back onto mothers. Please do not mistake carer exhaustion for capacity. Please do not assume informal supports exist where they do not. Please do not design reforms around an average participant while leaving the most severe and complex families exposed.

My request to speak to the Committee I respectfully request the opportunity to appear before the Senate Committee and speak to my lived experience as a mother, primary carer and advocate. I would also like my son ’s voice and presence to be included in a way that is safe, respectful and disability-informed, if the Committee considers that appropriate. I can only attend if he is with me as my husband will be recovering from major surgery and physically unable to care for . I am willing to appear by video or in person if that is possible. I do not ask because public speaking is easy. It is not. I ask because the lived reality of families like mine cannot be fully understood through budgets, administrative summaries or standardised forms. I want the Committee to see the human reality behind this Bill. I want the Committee to understand that my son is not a budget line. My daughter is not a secondary consideration. My family is not an informal support system that can simply absorb whatever government reform removes.

People must not speak over families they do not understand I am also asking the Committee to be careful about who is allowed to speak for families like mine.

There are people who are supposedly speaking on behalf of NDIS participants, carers and families who could not possibly imagine what we live through every day unless they have lived at this severe and complex end of disability. They may speak in policy language about sustainability, eligibility, informal supports, parental responsibility and reasonable supports. But they do not live the reality of finding a nearly 15-year-old child face down in the bath. They do not live the reality of wiping a teenage son after toileting. They do not live the reality of sleeping lightly because a child may wake at 4.30 am, abscond, ochke, lash out when overwhelmed, or become unsafe within seconds.

I also ask the Committee to understand that the phrase “informal supports” can sound simple only to people who have never had to ask a trusted friend to care for their child and hear fear in their voice. It can sound simple only to people who have never had to plan for what happens when a nearly 15-year-old with the cognitive ability of approximately a two-year-old is physically stronger than most adults around him. It can sound simple only to people who have never had to accept that love is not the same as safe care.

That is why families like mine must be heard directly. We should not be spoken about as a cost pressure, a budget risk, an administrative category or a problem to be managed. We are the people living the consequences of every decision made about the Scheme.

The most painful part is that we are not only planning for today. Every day, and I have to think about what happens when we are no longer here.

Who will keep safe in the community if he becomes overwhelmed because there is a traffic jam and he has a meltdown that the public doesn’t understand? Who will explain to police that this 6ft man

• child is NOT a risk to others, he just needs space to calm down? Who will keep safe in the bath? Who will help him with toileting and hygiene? Who will supervise him when he eats so he does not choke? Who will understand his communication, his anxiety, his routines, his sensory needs and his triggers? Who will protect and make sure her life is not swallowed by crisis? Who will love my children as whole people when I am gone?

These are not distant or abstract questions. They sit with me every day. They sit underneath every NDIS review, every therapy report, every support-worker roster, every failed provider arrangement, every funding decision and every proposed legislative change. Families like mine are not only asking for help with this week. We are trying to build a safe future for children whose disability will be lifelong.

This is why the NDIS must remain a lifelong disability support scheme for people with significant and permanent disability. It must include proper planning for adulthood, housing, care continuity, safeguards, respite, supported decision-making and the transition that must happen when parents can no longer carry the whole system on their backs.

Please do not let people who have never lived this reality speak over the people who do. Please hear directly from the families at the severe and complex end of the Scheme before laws are passed that may decide our children’s safety, dignity and future.

What I ask the Committee to recommend I ask the Committee to recommend that the Bill not proceed in its current form. If the Bill proceeds, I ask that it be substantially amended to protect the most severe and complex participants and their families.

1. Participants with profound, lifelong and complex disability must not be disadvantaged by standardised functional capacity tools.
2. Carer evidence and lived experience must be treated as essential evidence, not anecdotal background.
3. Participants with clearly established significant, permanent and lifelong disability should not be forced into repeated doctor and specialist appointments merely to re-verify the same disability for each plan cycle.
4. Unscheduled reassessments must remain available where there is urgent risk, carer breakdown, puberty-related change, provider failure, school crisis, family crisis, surgery, injury, loss of informal support or safety concerns.
5. Supports must not be reduced through broad determinations without individual consideration of disability, risk, family capacity and safety.
6. Social, community and capacity-building supports must be recognised as essential for many participants, not treated as optional extras.
7. Plans must not be suspended or participant status revoked without strong human safeguards, multiple contact methods, nominee and advocate involvement, and protections for children and people with intellectual or communication disability.
8. Families must not be punished for administrative non-response where disability, crisis, carer burden, surgery, provider failure or system failure contributed.
9. Mainstream or foundational supports must not be treated as replacements unless they actually exist, are available, appropriate, timely and capable of meeting the participant’s needs.
10. Record-keeping, debt and claim-timeframe rules must not unfairly penalise self-managing families acting in good faith.
11. The NOIA should not require repeated full medical re-verification of severe, permanent and lifelong disabilities unless there is a genuine evidence-based reason to believe the participant’s disability or functional support needs have substantially changed.

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Fraud and sharp-practice measures must target exploitation, overcharging and unsafe providers, not ordinary families trying to keep their children safe.

Automation must not be used to make or drive decisions about complex planning, access,

reassessment, suspension, debt or funding reduction without meaningful human review.

Families in the severe and complex cohort must be given a direct voice in reform, including parents who are planning for the safety, housing, care and dignity of children with lifelong disability after their parents are no longer here.

Informal supports must not be assumed unless they are actually available, physically capable, willing,

safe, trained and able to manage the participant’s disability-related risks in real life.

The Senate should not pass reforms of this scale without genuine co-design with people with

disability, families, carers, advocates, clinicians and the severe-complex cohort.

Closing

The title of this Bill refers to future generations. and are part of those future generations. They are not theoretical participants. They are real children with real disability, real vulnerability, real needs and real futures. They deserve to be seen in this process. I am asking the Senate not to pass a law that makes life harder for the families already carrying the heaviest load. I am asking the Senate not to mistake carer exhaustion for capacity. I am asking the Senate not to assume that informal supports exist where they do not. I am asking the Senate not to build a system that protects budgets by placing more risk onto disabled children and their families. Families like ours are rare, complex and often invisible. But we are exactly the families the NDIS must not fail. Please do not allow people who could not imagine our daily life to speak over families like mine.

Please do not make law for the severe and complex cohort without hearing directly from the severe and complex cohort.

Please understand that when parents like us talk about support, we are also talking about what happens when we die, when we become too old, too injured or too exhausted to keep doing the impossible. We are trying to build a future where our children are safe when we are no longer here to protect them.

Please do not build a disability system on the fiction that families like mine have unpaid, safe, capable care waiting in the background. We do not.

Please reject this Bill in its current form. Please listen before harm is done. Yours sincerely,

Mother, primary carer and advocate for and [insert phone] [insert email]

Sources and evidence referred to in this submission

This submission summarises relevant personal and clinical information. I understand that the Committee does not require medical reports, NDS participant plans, court documents or correspondence with the NODA or NDIS Quality and Safeguards Commission, and that such documents may be returned if provided. I have therefore summarised the relevant clinical evidence rather than attaching the full medical report, unless the Committee asks for further material.

• Senate Community Affairs Legislation Committee inquiry page for the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026.
• Australian Government Department of Health, Disability and Ageing, NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026 fact sheet, May 2026.
• Consultant Paediatrician , letter dated 18 May 2026 regarding , summarised in this submission.