SUBMISSION TO THE SENATE

Standing Committee on Community Affairs

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

Submitted by:

Date: 29 May 2026

Contact: Ph: email:

Executive Summary

I am the mother of , an eight-year-old little girl living with multiple rare and complex medical conditions who relies on the National Disability Insurance Scheme for her safety, daily care and quality of life.

I am writing this submission not as a policy expert or legal professional, but as a mother who has recently lived through one of the most unimaginable traumatic experiences. The events of May 2026 were made even harder by the fact that we— , her family and care team—weere caught in a system that says its core values are to value people, grow together, aim higher and take care.

Earlier this month, became critically unwell with severe respiratory complications and was urgently transferred to Sydney Children’s Hospital (SCH) in Randwick where she was intubated. After weeks at SCH she was well enough to be transferred to Wollongong Hospital to continue her recovery.

When was transferred, our family entered a series of distressing interactions with the NDIA about whether her existing, fully funded 24/7 carers could continue supporting her while she remained in Wollongong Hospital.

We were not asking for additional funding.

We were simply asking for the continuation of ’s already approved support so the highly trained carers who know her complex needs and signals could remain beside her during a life-threatening medical crisis.

We were told this was a matter of ‘parental responsibility’, with the implication that because had been admitted to a public hospital, responsibility for her care now sat with NSW Health and hospital staff. In reality, neither our family nor the team at Wollongong Hospital could be expected to provide the highly specialised, 24-hour care needs to stay safe.

You do not need to be a medical professional or a frequent visitor to our hospitals to know the system is under immense pressure. We could not reasonably expect nursing staff to learn ’s highly complex care needs and remain constantly available across an entire shift.

For nearly a week, we faced enormous stress, uncertainty and fear while trying to advocate for

our daughter. After disappointing interactions with the NDIA—having our case refused initially,

then granted a short-term grace period—we were broken. We contacted Members of

Parliament, including our local federal member, Carol Berry, and the NSW Health Minister, Ryan

Park, and spoke publicly to fight for common sense and compassion to prevail.

Eventually, after significant pressure and public attention, temporary approval was granted for a

12-month period.

But no family should ever have to fight that hard, especially while their child is lying in a hospital bed.

Throughout this experience, we heard from many other families of children with severe

disabilities and complex medical needs who shared similar stories. Some described dangerous

gaps in care caused by rigid policy interpretations and bureaucratic delays. Others shared heartbreaking accounts of children deteriorating in hospital because the right support was not available when it was needed most.

This experience changed our view of the system entirely.

What became painfully clear to us is that the system already lacks flexibility, humanity, and practical understanding for families managing high-risk complex disability care.

And, simply, that is why this Bill frightens us so much.

We are deeply concerned that further tightening eligibility, reducing support, centralising decision-making powers and increasing bureaucracy will place even more pressure on vulnerable children and families who are already operating at breaking point.

The NDIS was created to support people with disabilities to live safely and with dignity. Any reform must strengthen those protections, not weaken them.

Any reform should take a holistic view of the system—how it works for participants, carers and families, and how pressure may shift into other parts of the health system, including public hospitals and doctors’ practices. These challenges do not disappear simply because

governments change settings or processes. Given what is at stake for the health and lives of so many people, I do not believe the consultation process has been adequate.

While we understand the need for accountability and vehemently support long-term

sustainability within the scheme, we believe these reforms are moving too fast and without

adequate consultation with the people whose lives will be most affected.

Families like ours are already exhausted. Our carers and public health systems are under

pressure. We must do better, and this Bill is not that.

We urge the Committee to carefully consider the real human impact of these proposed changes before passing legislation that may unintentionally place vulnerable children at greater risk.

About

     is an intelligent, beautiful and incredibly resilient little girl who has overcome more

challenges in her eight years than most people face in a lifetime. My husband and I, and our

other children, are so proud of . As a human being, she is as unique and rare as the

reasons she is an NDIS participant.

    lives with multiple rare and complex medical conditions and requires around-the-clock

care and support. One of her conditions is so rare that there are fewer than 20 documented

cases globally—she is exceptionally special, and there is significant nuance in her care requirements.

    ’s health is not simple or predictable. Her condition can change rapidly and carers who

support require specialised knowledge of her routines, communication, respiratory risks, medical equipment and emergency responses.

Her support workers are not simply providers of casual assistance. They are an essential part of the team that keeps her safe. It has taken years for her core team to learn ’s needs, and as her mother, I know she trusts them and feels safe with them. That trust gives my husband and me the reassurance we need to care for and provide for our three children.

When was hospitalised, the suggestion that these carers could simply be removed because she was technically inside a医院 ignored the reality of complex disability care. It

dismissed the value of specialised carers, overlooked the importance of continuity of care,
added to the workload of NSW Health staff, and placed at greater risk.

For example, while I had returned home to see my other two children and spent hours pleading with NDIA staff, my mother sat by ’s bedside. My mum is extraordinary, but she is not a medical professional. During that time, experienced an avoidable event that led to ICU staff being called to attend. Her care team would have recognised the warning signs and intervened before ’s respiratory situation escalated.

The stress and trauma this medical event caused , my mum and our family was indescribable, and mainly because it was avoidable.

The emotional toll of this period has been enormous, but it has also given me a reason to advocate for change—for and every other participant, family and care team. At times, we felt completely unheard.

As parents, we were trying to focus on helping our daughter survive and recover while simultaneously fighting a bureaucratic battle over existing support funding.

No parent should ever be placed in that position.

No child should be put at risk because of flawed policy or regulatory settings.

Concerns Regarding the Bill

Our concerns about this Bill are not theoretical.

We are worried because we have already experienced firsthand how inflexible systems and delayed decision-making can place medically vulnerable children at risk.

We are particularly concerned about:

Increased rigidity around eligibility and assessment processes.
Greater Ministerial powers with reduced transparency and oversight.

Reduced flexibility for participants with complex and fluctuating needs.
The possibility of support reductions being implemented through administrative decisions rather than individualised clinical understanding.
The lack of genuine consultation time provided to families and participants regarding these significant reforms is important. The current system is already extremely difficult for many families to navigate. Any changes need to address the pain points and issues that create inefficiency in a system meant to make life easier.

These reforms will make it even harder for children like to receive safe, consistent support.

Rather than addressing the system’s existing problems, they risk creating new ones.

The Importance of Continuity of Care One of the biggest lessons from our recent hospital experience is that continuity of care matters. For children with severe and complex disabilities, trusted carers are not optional extras. They are a critical part of the child’s safety system. Removing experienced and trusted carers during hospital admissions may appear administratively reasonable on paper, but in practice it can create distress, confusion, communication breakdowns, and increased clinical risk. Families should not justify the importance of continuity of care during medical crises. The system should already recognise this and take a human-centred approach to designing the processes that participants and their families are required to navigate. We strongly urge the Committee to ensure any future reforms protect the ability for medically complex participants to retain continuity of support across hospital, home and community settings.

Recommendations

We respectfully ask the Committee to consider the following:

Ensure continuity of funded disability supports for medically complex participants during hospital admissions where clinically appropriate.
Strengthen safeguards and appeal rights before introducing any new functional capacity assessment framework.
Delay major structural reforms until genuine consultation with participants, families and disability advocates has occurred.
Ensure all future NDIS reforms remain grounded in the original principles of dignity, choice, flexibility and participant wellbeing.
Require greater parliamentary oversight of Ministerial powers affecting participant supports and eligibility.
Include stronger protections for participants with rare, complex and fluctuating conditions whose needs may not fit standardised assessment models.
Ensure comprehensive engagement with health ministers and public service leaders so that solutions and reforms are designed holistically, rather than treated as another jurisdictional or ministerial portfolio issue.
Ensure that Members act in accordance with the values of public service, use inclusive language, and avoid debate that leads to ‘othering’ and shame for participants and their families.

Conclusion

Families like ours are not asking for luxury or special treatment.

We are asking for safety, compassion, common sense and dignity.

The National Disability Insurance Scheme (NDIS)

The NDIS has been life-changing for many Australians, including . But systems designed

to support vulnerable people must never lose sight of the human beings behind the paperwork.

When governments discuss “sustainability”, “efficiency” and “cost pressures”, we ask that they

also remember the exhausted parents sitting beside hospital beds fighting for their child.

Because behind every policy decision is a real family living with the consequences.

Thank you for considering our submission and for taking the time to hear directly from families

living this reality every day. I would welcome the opportunity to provide further advice and

engage with the Standing Committee members and/or relevant Ministerial offices at this critical

moment.

Mother of

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