Submission to Senate Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDSI for Future Generations) Bill 2026

Hello,

I am writing to make a submission to the Senate Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026.

I am writing as the parent and primary carer of my 14-year-old daughter, who lives with a rare genetic condition causing profound and permanent disability. I also work in the disibilty sector. I live on the Central Coast in New South Wales.

My submission is based on my lived experience supporting my daughter as an NDIS participant and my observations from working in the industry.

I am deeply concerned about the proposed changes to the National Disability Insurance Scheme (NDIS) legislation and what these reforms may mean for children and young people with the highest and most complex support needs.

My daughter’s disability is severe, lifelong, and medically complex. She presents with severe cerebral palsy classified as GMFCS Level 5 and MACS Level 5. She is a full-time wheelchair user with no independent mobility or functional hand use. She is non-verbal, incontinent, and has a moderate to severe intellectual disability. She also experiences epilepsy and has significant dysphagia, placing her at ongoing and serious risk of aspiration and choking.

She is entirely dependent on others for every aspect of daily life.

She requires assistance with:

• All personal care tasks including bathing, toileting, dressing, continence care, and hygiene
• Transfers and positioning to prevent injury and pressure-related complications
• Feeding and drinking support to minimise aspiration risk
• Medication administration and epilepsy monitoring
• Communication interpretation and emotional regulation
• Mobility and safe transportation
• Accessing education, therapies, appointments, and the community

Due to the complexity and intensity of her care needs, she requires two-to-one support in many situations to ensure her safety and dignity. This is not an optional support or a matter of convenience. It is a clinical and practical necessity. Managing seizures, behaviours associated with communication frustration, physical transfers, and aspiration risks cannot safely be undertaken by one person alone in many environments.

The proposed changes to the NDIS legislation create enormous fear for families like ours because they appear to move further away from an individualised, needs-based system and toward one that prioritises cost containment over human impact. Families caring for children with profound disabilities are already under extraordinary emotional,

Concerns Regarding Proposed Reforms

The possibility of reduced funding, narrowed definitions of “reasonable and necessary” supports, or increased barriers to accessing essential care places vulnerable children at unacceptable risk.

I fear these reforms fail to recognise the realities faced by participants with permanent and severe disabilities. My daughter’s needs are not temporary. They will not improve with age, nor can they be reduced through independence-building measures that may apply to participants with lower support needs. Her condition is lifelong and degenerative in its functional impact. She will always require high-level support and supervision.

The NDIS has been life-changing for families like ours because it acknowledged that disability support is not a luxury — it is essential infrastructure that enables safety, participation, dignity, and survival. The supports my daughter receives are what allow her to:

• Remain safely cared for at home with her family
• Participate in her community and access experiences outside of medical settings
• Attend appointments and therapies safely
• Maintain her health and wellbeing
• Prevent avoidable hospital admissions and medical complications
• Preserve her dignity and quality of life

Without appropriate supports, the consequences are serious and far-reaching. Reductions in care would not simply create inconvenience — they would create direct risks to her health and safety, including:

• Increased aspiration events and choking incidents
• Poor seizure management outcomes
• Higher rates of hospitalisation
• Physical injury during transfers and care tasks
• Increased social isolation and exclusion
• Significant carer burnout and mental health deterioration within families
• Increased reliance on emergency health and crisis systems

Families like ours already provide unpaid care around the clock. We coordinate therapies, medical appointments, equipment, medications, advocacy, education support, and complex behavioural and physical care every single day. We do this because we love our children, but we cannot do it alone. The NDIS was designed to support families, not replace them as unpaid disability systems operating beyond exhaustion.

I am also deeply concerned about the growing public narrative surrounding the NDIS that frames participants as financial burdens rather than human beings deserving of equal opportunity, safety, and inclusion. Children with profound disabilities are among the most vulnerable members of our community. Policies that restrict supports in the

name of sustainability risk stripping away their basic rights and placing impossible pressure on carers and families.

I urge the Government to ensure that any changes to the NDIS legislation:

• Protect participants with permanent and profound disabilities
• Preserve individualised funding based on genuine functional need
• Recognise the necessity of high-intensity and two-to-one supports where clinically appropriate
• Avoid introducing additional administrative barriers that delay or deny essential care
• Meaningfully consult with families, carers, disability advocates, and medical professionals
• Prioritise participant safety, dignity, and wellbeing over cost-cutting measures

For families like mine, the NDIS is not about luxury or excess. It is about survival, safety, and ensuring our children can live with dignity in their own homes and communities.

I ask you to carefully consider the real-world consequences these proposed changes may have on children with profound disabilities and the families who care for them every day. We need a disability support system grounded in compassion, evidence, fairness, and an understanding of complex care realities.

Thank you for taking the time to hear our experience and concerns. I sincerely hope the voices of families like ours are not overlooked in decisions that will profoundly affect the lives of vulnerable Australians.