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 redactedand 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 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 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,pysical access,

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 pysical assistanc eand support worker involvement . rhese supports are not optional conveniences.Theyarethe essentialsupportsthat allow m y daugherto safely participatein education maintain h erhealth anda ndignity avoid serious medical complications and live as independentlyas possib le. wile re habilitation a n d therapy can improve qualityoflife strength confidence an dindependence within existing limitations they do nor reversea complete C4/C5 spinal cord injury.My daughters need for significan tdailysupportis perman entanda ndlifelong .

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

Submission 1864

Now 18 years old, my daughter is studying Bachelor’s Arts at [redacted] pathway leading towards Juris Doctor degree. Her goal includes contributing meaningfully society via education & future professional careers, dependent heavily continued access appropriate NDIS supports. My daughter requires daily assistance mobility personal care including hourly bladder management), food preparation eating drinking blood pressure management pressurized transport physical accessibility participation in educational activities social life. The support she receives under NDIS not discretionary recreational they physically possible her live safely home leave house attend university engage socially participate community dignified independent. Deeply concerned proposed amendments National Disability Insurance Scheme Amendment Securing NDIs Future Generation Bill result substantial reductions Social Community Participation Funding further reduction core supports severe permanently disabled such quadriplegia. For my daughter a potential up to %50% cutback on Social Community Participation Support would have devastating immediate consequences without adequate support workers and funding:

• Her health safety will be put risk;
• Attending University may become impossible;
• Community participation significantly decline;
• social isolation increase mental health risks rise; her ability partake employment reduce; -and independence substantially reduced. These are no hypothetical concerns for person living with Quadriplegic participation supports often difference between engaging meaningful Society confined Home should viewed as discretionary lifestyle supports reasonable necessary enable basic participations ordinary lives participants like My Daughter, appropriate NDIS Supports dignity inclusion practical investment long-term social economic participation The NDIS established supporting Australians permanent severely disabilities Ordinary Meaningful Lives For My Daughter means pursue higher education associated career contribute communities maintain friendships build future despite living Permanent Physical Disabilities I also concern increasing reliance standardised assessments generic planning frameworks automated funding approaches fail recognize realities Participants lifelong highly complex physical disabilities needs permanent individualized clinically significant cannot accurately understood broad assumptions or standardized budget caps.

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

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 hourly bladder care which requires fine motor hand function. This demonstrated fundamental misunderstanding about quadriplegia’s permanence due to injury. A complete C4/C5 spinal cord injury results permanently loss手function paralysis autonomic bodily functions including bladder bowel control Physiotherapy cannot restore hand function nor achieve independent bladder management when physical neurological function does not exist Experiences like this highlight risks funding decisions made without sufficient disability-specific expertise or adequate understanding complex neuro disabilities They reinforce importance ensuring participants severe permanent disabilities protected from inappropriate assumptions generic assessment frameworks pressure demonstrate unrealistic improvement conditions lifelong non-recoverable The Government repeatedly stated reforms intended ensure scheme returns original purpose supporting people with permanent severe disability Public statements Minister Butler other representatives reinforced principle key justification reform However legislation appears contain explicit safeguards confirming participants severely and physically disabled living quadruplegia will significant reductions essential support For families our creates substantial uncertainty anxiety If stated purpose preserve scheme people severe lifetime then itself clearly reflect intention Present there disconnect public rationale for reform absence specific legislative protections participants high-support needs There serious risk reforms improve sustainability may unintended consequences participants severe permanent physical disabilities Reductions in supports ultimately result increased

• Increased risk unsafe environments living conditions,
• Increased hospital admissions secondary health complications,
• Deterioration mental wellbeing education future employment participation, and greater long-term costs healthcare social systems I respectfully ask Committee consider following amendments safeguards:

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 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\npermanent disabilities whose functional impairments are lifelong from arbitrary reductions \nto core supports participation funding where support needs remain clinically unchanged.
• Explicit protection for social community participation supports productivity value: The legislation should prevent arbitrary or blanket reduction participatation funding wherere\nsupports directly linked eduction employment volunteering independent living outcomes.- Requirement individualised human decision making:Funding decisions those existingsevereand permanen disabilityshould rely primarily on automated systems standardised algorithms generic assessment tools without meaningfulhuman review consultation participant families. -Preservation of review appeal rightsParticipantswithseverepermanents complexdisabilitie like quadriplegia must retain accessindependentreview mechanismswherefundingreductions significantly affect safety education independenceorparticipation. -MandatoryconsultationdisablecommunitiesThe Government be require consult direct peopleliving severepermanent disabilties family carers disable advocates allied health professionals before implementing major changes planning frameworkssupport categories. My daughter has worked extraordinarily hard to rebuild her life after devastating injury She is pursuing university studies future legal career despite livingquadriplegic The NDIS played critical role inmaking thisfuture possible I urge Committee ensure reforms aimed sustainability do not unintentionally remove essentialsupports allowpeople mydaughter participate fully Australian society pursueeducation live dignity and independencethe success theNDIS should measured solely by reducing expenditure It also measure whether Australians severe permanent disabilities able study partcipate contributelive withdignity Formydaugther right supports make thatpossible Thank you for considering submission.