Submission 1864

Submission to the Senate Community Affairs Legislation Committee

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

I am writing as the parent of a young woman living with quadriplegia following a catastrophic spinal cord injury sustained in 2022.

At just 14 years old, my daughter suffered a complete C4/5 spinal cord injury in a mountain biking accident while on holiday in and pursuing her dream of one day competing as an elite cyclist. Prior to her injury, my daughter was an active, ambitious and highly motivated young person with a strong future ahead of her.

Following the accident, my daughter spent weeks in intensive care fighting to breathe without a ventilator and began the long process of rehabilitation and adjustment to permanent quadriplegia. Despite the severity of her injury, my daughter has demonstrated extraordinary resilience, determination and commitment to rebuilding her life and maintaining her independence wherever possible.

Living with quadriplegia affects far more than mobility. My daughter is paralysed from the chest down and has no functional use of her hands. She also lives with permanent loss of bladder and bowel function, impaired temperature regulation, and impaired blood pressure regulation caused by damage to the autonomic nervous system.

As a result, my daughter faces ongoing health and safety risks that require careful daily management and significant physical support. She requires extensive assistance with personal care, eating, drinking, dressing, transfers, continence management, transport, physical access, and participation in everyday activities.

Tasks many people perform independently — getting out of bed, showering, dressing, using the bathroom, preparing food, eating, drinking, studying, travelling to university, opening doors, handling materials, or participating in community activities — require significant planning, physical assistance, and support worker involvement.

These supports are not optional conveniences. They are the essential supports that allow my daughter to safely participate in education, maintain her health and dignity, avoid serious medical complications, and live as independently as possible.

While rehabilitation and therapy can improve quality of life, strength, confidence, and independence within existing limitations, they do not reverse a complete C4/C5 spinal cord injury. My daughter’s need for significant daily support is permanent and lifelong.

Submission 1864

Now 18 years of age, my daughter is studying a Bachelor of Arts at the on an assured pathway to the Juris Doctor. Her goal is to contribute meaningfully to society through higher education and a future professional career. However, achieving this depends heavily on continued access to appropriate NDIS supports.- My daughter requires significant daily support with mobility, personal care (including 3 hourly bladder management), food preparation, eating, drinking, blood pressure management, pressure care, transport, physical access, and participation in education and community life. The supports she receives through the NDIS are not discretionary or recreational. They are the supports that make it physically possible for her to live safely at home and leave the house to attend university, engage socially, participate in the community, and live with dignity and independence.

I am deeply concerned that the proposed amendments to the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 may result in substantial reductions to social and community participation funding and further reductions to core supports for participants with severe and permanent physical disabilities such as quadriplegia.

For my daughter, a reduction of up to 50% in social and community participation supports would have devastating and immediate consequences. Without adequate support workers and participation funding:

• her health and safety will be put at risk
• attending university may become impossible,
• community participation would significantly decline,
• social isolation would increase,
• mental health risks would rise,
• her ability to participate in future employment would reduce
• and her independence would be substantially reduced.

These are not hypothetical concerns. For a person living with quadriplegia, participation supports are often the difference between engaging meaningfully in society and being confined to home. They should not be viewed as discretionary lifestyle supports. They are reasonable and necessary supports that enable basic participation in ordinary life. For participants like my daughter, appropriate NDIS supports are not only a matter of dignity and inclusion, they are also a practical investment in long-term social and economic participation.

The NDIS was established to support Australians with permanent and severe disabilities to live ordinary and meaningful lives. For my daughter, this means being able to pursue higher education and associated career, contribute to the community, maintain friendships, and build a future despite living with permanent physical disability.

I am also concerned that increasing reliance on standardised assessments, generic planning frameworks, or automated funding approaches may fail to recognise the realities of participants with lifelong and highly complex physical disabilities. My daughter’s needs are permanent, individualised, and clinically significant. They cannot be accurately understood through broad assumptions or standardised budget caps.

Submission 1864

Our family has already experienced situations where the realities of quadriplegia were poorly understood within planning discussions. At one point, an NDIS planner suggested that because my daughter had received physiotherapy supports, she should now be able to independently manage her 3 hourly bladder care, which requires fine motor hand function.

This demonstrated a fundamental misunderstanding of quadriplegia and the permanent nature of injury. A complete C4/C5 spinal cord injury results in permanent loss of hand function, paralysis, and loss of autonomic bodily functions, including bladder and bowel control. Physiotherapy cannot restore hand function nor achieve independent bladder management where-the physical neurological function required does not exist.

Experiences like this highlight the risks of funding decisions being made without sufficient disability-specific expertise or an adequate understanding of complex neurological disabilities. They reinforce the importance of ensuring that participants with severe and permanent disabilities are protected from inappropriate assumptions, generic assessment frameworks, or pressure to demonstrate unrealistic “improvement” in conditions that are lifelong and non-recoverable.

The Government has repeatedly stated that reforms to the NDIS are intended to ensure the Scheme returns to its original purpose of supporting people with permanent and severe disability. Public statements by Minister Butler and other Government representatives have reinforced this principle as a key justification for reform.

However, it is concerning that the legislation does not appear to contain explicit safeguards confirming that participants with severe and permanent physical disabilities — including people living with quadriplegia — will be protected from significant reductions to essential supports.

For families like ours, this creates substantial uncertainty and anxiety. If the stated purpose of reform is to preserve the Scheme for people with severe and lifelong disability, then the legislation itself should clearly reflect that intention. At present, there appears to be a disconnect between the public rationale for reform and the absence of specific legislative protections for participants with permanent high-support needs.

There is a serious risk that reforms intended to improve sustainability may create unintended consequences for participants with severe and permanent physical disabilities.

Reductions in supports may ultimately result in:

• increased risk and unsafe environments and living conditions,
• increased hospital admissions and secondary health complications,
• deterioration in mental health and wellbeing,
• reduced educational and future employment participation,
• and greater long-term costs to the healthcare and social support systems.

I respectfully ask the Committee to consider the following amendments and safeguards:

Submission 1864

Explicit protection for existing participants living with severe and permanent disabilities

The legislation should contain explicit protection for current participants with severe and permanent disabilities, whose functional impairments are lifelong from arbitrary reductions to core supports and participation funding where support needs remain clinically unchanged.

Explicit protection for social and community participation supports that have productivity value.

The legislation should prevent arbitrary or blanket reductions to participation funding where supports are directly linked to education, employment, volunteering, independent living outcomes.

Requirement for individualised human decision-making

Funding decisions for those with existing severe and permanent disability should not rely primarily on automated systems, standardised algorithms, or generic assessment tools without meaningful human review and consultation with participants and their families.

Preservation of review and appeal rights

Participants with severe, permanent, complex disabilities, like quadriplegia must retain access to independent review mechanisms where funding reductions significantly affect safety, education, independence, or participation.

Mandatory consultation with disability communities

The Government should be required to consult directly with people living with severe and permanent disabilities, families, carers, disability advocates, and allied health professionals before implementing major changes to planning frameworks or support categories.

My daughter has worked extraordinarily hard to rebuild her life after a devastating injury. She is pursuing university studies and a future legal career despite living with quadriplegia. The NDIS has played a critical role in making this future possible.

I urge the Committee to ensure that reforms aimed at sustainability do not unintentionally remove the essential supports that allow people like my daughter to participate fully in Australian society, pursue education, and live with dignity and independence.

The success of the NDIS should not be measured solely by reducing expenditure. It should also be measured by whether Australians with severe and permanent disabilities are able to study, participate, contribute, and live with dignity. For my daughter, the right supports make that possible.

Thank you for considering this submission.