Submission Opposing the Proposed NDI Bill

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

To Whom It May Concern,

My name is and I am ’s grandparent.

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

As a grandparent, there is nothing more difficult than watching your grandchild face extraordinary challenges and knowing there is very little you can do to ease their suffering. Equally heartbreaking is watching your own child struggle under the relentless demands of caring for a medically fragile child while fighting every day to secure the support their family needs.

    is not simply a child with a disability. She is a little girl with severe and permanent disabilities requiring intensive support every hour of every day. She lives with Hypoxic Ischemic Encephalopathy, Severe Quadriplegic Dystonic Cerebral Palsy, medication-resistant epilepsy, profound intellectual disability, bulbar dysfunction, cortical visual impairment, kyphoscoliosis and multiple other complex medical conditions.

She cannot walk, talk, swallow safely, communicate her needs, reposition herself, feed herself or protect her own airway.

Every day her parents face the reality that ’s life depends on constant monitoring and intervention.

When I hear discussions about reducing funding, reassessing participants or tightening access to the NDIS, I do not think about budgets or policy. I think about .

I think about a little girl who experiences dozens of seizures every day.

I think about a child who requires frequent airway suctioning to prevent aspiration.

I think about the reality that without adequate support, the risks to her health and safety increase dramatically.

Most importantly, I think about the people who carry the burden of that responsibility every day—her parents.

As a grandparent, I have watched the impact that caring for has had on both and .

I have watched them sacrifice almost every aspect of their own lives to ensure receives the care she needs.

I have watched them spend countless hours attending appointments, coordinating therapies, training support workers, advocating with government agencies, managing medical crises and fighting for supports that should never have been questioned in the first place.

I have watched exhaustion become normal.

I have watched stress become constant.

I has watched their lives become centred entirely around keeping their daughter alive and safe.

The reports submitted in support of ’s NDIS needs clearly document escalating care requirements, severe caregiver burden, significant carer burnout and the need for intensive support. Despite this, the family has already experienced reductions in funding.

As a grandparent, this is incredibly difficult to understand.

How can supports be reduced when the evidence shows that needs are increasing?

How can families be expected to absorb more responsibility when they are already carrying so much?

How can parents continue to provide safe care when funding reductions remove the very supports that make that care possible?

The reality is that cuts to support do not reduce disability.

They do not reduce seizures.

They do not reduce aspiration risks.

They do not reduce the need for supervision.

They simply shift more responsibility onto already exhausted families.

The proposed reforms create significant fear that further funding reductions, reassessments and stricter eligibility requirements will place children like at even greater risk.

Families caring for children with profound disabilities already face enormous emotional, physical and financial pressures.

Many are surviving only because the NDIS provides essential supports that allow their children to remain safely at home.

If those supports are reduced, the consequences will not be measured in spreadsheets.

They will be measured in:

• increased hospital admissions,
• worsening mental health,
• family breakdown,
• caregiver collapse,
• and reduced quality of life for children with disabilities.

As a grandparent, I worry not only about ’s future, but about the wellbeing of her parents.

No family should be forced to choose between their own wellbeing and their child’s safety.

No parent should be pushed beyond their limits because the support system intended to help them has been weakened.

I urge the Government to listen to the voices of families, carers, grandparents and professionals who witness these realities every day.

Please protect children like .

Please protect the families who care for them.

Please ensure that the NDIS continues to provide the support necessary for Australia’s most vulnerable children to live safely, with dignity and the best quality of life possible.