Submission to the Senate Community Affairs Committee

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

Submitted by

Parent, and full-time carer of

Introduction

Thank you for the opportunity to provide this submission regarding the proposed changes to the National Disability Insurance Scheme (NDIS).

I am the parent and full-time carer of my son, , who lives with profound disability, quadruplegic cerebral palsy, refractory epilepsy, developmental delay, and complex medical needs. requires around-the-clock care and support for every aspect of daily living.

Our family relies heavily on the NDIS to access the therapies, equipment, supports, and services that allow to live safely and with dignity. I am deeply concerned about the impact these proposed legislative changes may have on children like and families already under immense physical, emotional, and financial pressure.

About

     is a young child with lifelong and permanent disabilities. He is PEG-fed and requires full

assistance with mobility, feeding, communication, medication administration, positioning, transfers, and personal care.

   experiences complex and unpredictable seizures despite multiple anti-epileptic

medications. His epilepsy significantly impacts every aspect of daily life and requires constant supervision and monitoring for medical emergencies.

In October 2025, underwent major orthopaedic surgery, including bilateral hip reconstruction, VDRO surgery and DEGA osteotomy procedures. His recovery required extensive rehabilitation, specialised equipment, therapy supports, and ongoing medical care.

   attends numerous appointments with specialists, therapists, surgeons, and hospital

teams. His needs are not temporary and will not improve to the point where support is no longer required. Despite this, families like ours are repeatedly expected to prove disability and justify essential supports.

The Daily Reality of Complex Disability

Caring for a child with profound disability extends far beyond typical parenting responsibilities.

Our daily life revolves around:

administering medications multiple times per day
monitoring and managing seizures
PEG feeding and nutritional management
repositioning and physical care
transporting safely to therapies and appointments
coordinating specialists, therapists, and support providers
managing mobility equipment and assistive technology
advocating constantly for access to services and funding

The physical and emotional demands are relentless. Sleep deprivation, exhaustion, stress, and burnout are common realities for families caring for medically complex children.

The NDIS is not a luxury for families like ours. It is essential for our child’s safety, quality of life, and ongoing development.

Challenges Accessing Supports Through the NDIS

While the NDIS has provided important supports for , accessing and maintaining those supports can be an exhausting and adversarial process.

Families caring for children with profound disability are often forced into repeated assessments, reviews, administrative processes, and appeals simply to maintain supports that healthcare professionals already agree are necessary.

One of the greatest challenges we have experienced is the ongoing need to continually prove permanent disability and justify basic supports.

There also appears to be a significant lack of understanding surrounding epilepsy and medically complex disability within decision-making processes. Although ’s epilepsy has a major functional impact on his daily life, safety, care needs, and development, epilepsy is not always recognised appropriately within the NDIS framework.

I am also concerned about the increasing separation between what is considered a “medical” responsibility versus a disability-related support. Families caring for children with severe epilepsy and complex medical needs often fall into gaps between systems, leaving parents to fight for essential supports that directly affect safety, hospitalisation risk, and quality of life.

Concerns About the Proposed Legislation

I am deeply concerned that the proposed changes may create additional barriers and uncertainty for participants with complex and lifelong disabilities.

My concerns include:

increased decision-making powers without sufficient safeguards or transparency
reduced flexibility in accessing individualised supports
stricter interpretations of what supports are considered NDIS responsibilities
additional administrative burden placed on families already under extreme pressure
reduced access to therapies, early intervention, and assistive technology
the risk of medically complex children falling through gaps between health and disability systems
increased fear and uncertainty for families relying on essential supports

Families caring for children with profound disability should not be forced to live in constant fear of losing supports that are critical to their child’s wellbeing and safety.

The Impact on Families

The emotional, physical, social, and financial impact of caring for a child with complex disability is enormous.

Many parents reduce work hours or leave employment entirely due to caregiving responsibilities. Families experience financial hardship, social isolation, mental exhaustion, and ongoing stress attempting to navigate systems that are already incredibly difficult to manage.

For many carers, there is little opportunity for rest or recovery. Every aspect of life becomes centred around managing appointments, therapies, medications, equipment, paperwork, and daily care needs.

Despite these challenges, families continue advocating because our children depend on us completely.

Reforms to the NDIS should reduce stress and improve support access for vulnerable families — not create additional fear, uncertainty, and barriers.

What Needs to Change

I urge decision-makers to:

recognise epilepsy and medically complex disabilities more appropriately within the NDIS
ensure children with profound and permanent disabilities are not subjected to unnecessary reassessments
protect access to therapies, assistive technology, equipment, and early intervention supports
improve transparency and accountability surrounding funding decisions
reduce administrative burden on families already under immense pressure
genuinely consult with people with disability, carers, and families before implementing major reforms
ensure the NDIS remains flexible enough to meet highly individual and complex support needs

Conclusion

Families like ours are not asking for luxuries. We are asking for the supports necessary to keep our children safe, healthy, included, and able to participate in life as fully as possible.

Children with profound disability and complex medical needs should not become collateral damage in attempts to reform the NDIS. Behind every policy decision are real families navigating exhausting caregiving responsibilities, financial pressure, medical complexity, and constant uncertainty.

I urge the Government to genuinely listen to families living this reality every single day before implementing reforms that may create greater hardship for some of the most vulnerable Australians.

The NDIS has the power to change lives for the better when it is accessible, flexible, and responsive to individual needs. Any changes must protect the dignity, safety, and wellbeing of participants rather than create additional barriers for those already struggling to navigate an incredibly complex system.

Please do not lose sight of the real people behind these policies.

Thank you for taking the time to consider our family’s experience and concerns.

Sincerely,

Parent and full time carer of