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

Submission 3975

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

Submitted to: Senate Community Affairs Legislation Committee Submitted by: Date: June 1, 2026

My name is and I am ’s sister and ’s aunt.

I am writing this submission because I am deeply concerned about the proposed NDIS reforms and the impact they will have on my niece, her parents, and countless other Australian families caring for children with profound disabilities and complex medical needs.

As ’s aunt, I have had the privilege of watching her grow and witnessing the incredible love and dedication her parents have shown every single day. I have also witnessed the enormous challenges they face and the extraordinary demands placed upon them simply to keep safe and alive.

      is a beautiful little girl living with profound and permanent disabilities. She requires intensive

support every day and every night. Her life is shaped by severe cerebral palsy, medication-resistant epilepsy, profound intellectual disability, bulbar dysfunction, vision impairment and other complex medical conditions that affect every aspect of her functioning.

Unlike most children her age, cannot walk, talk, swallow safely, communicate her needs, feed herself or protect her own airway. She relies entirely on others for every aspect of her care.

When people discuss NDIS funding, support hours and policy reform, it can sound like numbers on a page.

For our family, it is not.

It is ’s life.

It is the difference between a child remaining safely at home with her family or facing increased medical risk and instability.

It is the difference between exhausted parents receiving the support they desperately need or being pushed beyond their capacity to continue safely caring for their daughter.

I have watched my brother and dedicate their lives to ’s care.

I have watched them spend countless hours managing appointments, therapies, hospital admissions, support workers, equipment, medications and ongoing medical emergencies.

I have watched them put ’s needs ahead of their own time and time again.

I have also watched the toll this has taken.

The exhaustion is constant. The stress is relentless. The emotional burden is enormous.

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

Submission 3975

The reports submitted regarding redacted’s care clearly document severe caregiver burden, increasing medical complexity and escalating support needs. Despite this, the family has already experienced funding reductions.

From the perspective of someone who knows this family well, these reductions are difficult to understand.

The reality is that redacted’s needs are increasing, not decreasing.

Her disabilities are permanent. Her medical risks are significant.

The support requirements identified by her treating professionals are based on genuine need, not convenience.

When funding is reduced, the need does not disappear.

The responsibility is simply transferred onto already exhausted parents.

The proposed reforms create significant concern that families like ours may face further reassessments, stricter eligibility requirements and additional reductions in support despite overwhelming evidence of need.

I worry deeply about what this means for redacted.

I also worry about what it means for redacted and redacted.

No parent should be expected to carry such extraordinary responsibility without adequate support.

No family should have to live with constant uncertainty about whether the supports keeping their child safe will continue.

Children like redacted cannot advocate for themselves.

They depend on their families and communities to speak on their behalf.

As her aunt, I am asking the Government to listen to the voices of families living this reality every day.

Please consider the human impact of these reforms.

Please consider the evidence provided by redacted’s treating professionals.

Please recognise that behind every funding decision is a real child and a real family doing everything possible to provide the best life they can.

I strongly urge the Government to protect children with profound disabilities, support family carers, and ensure the NDIS continues to provide the essential supports that allow vulnerable children like redacted to remain safe, healthy and cared for at home.