National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1010
Submission regarding the 2026 NDIS Bill and its impact on medically complex participants with lifelong congenital disability
To whom it may concern,
I am the parent and full-time carer of an 18-year-old National Disability Insurance Scheme participant living with profound, permanent and medically complex congenital disability.
My child has complex lifelong disability including OEIS complex, spina bifida, major skeletal malformations, bladder exstrophy, absent large bowel, permanent urinary and continence impairment, extensive pelvic reconstruction, chronic severe pain, osteopenia, psychological trauma, and multiple associated lifelong complications.
There is no corrective pathway.
My child has undergone 23 surgeries. Future surgical intervention can only manage complications, not improve or resolve their disability.
They are unable to independently:
• walk meaningful distances • drive • manage medications • coordinate care • communicate their complex medical history to clinicians • advocate for themselves in hospital or specialist settings • manage essential continence and medical supplies • sustain employment due to chronic pain and functional impairment They require a wheelchair for distance, ongoing support for mobility, and full care during periods of illness or physical deterioration.
They rely entirely on me for medication management, specialist communication, appointment coordination, therapy access, hospital advocacy, supply ordering, and daily health monitoring.
I also live with serious chronic health conditions including renal failure, autoimmune disease, permanent orthopaedic injury, recurrent kneecap dislocations, and significant ongoing medical needs. Our family is also caring for another child with Level 3 autism and has limited financial capacity. All specialist medical care for my child is interstate due to the rarity and severity of their condition.
The proposed 2026 NDIS Bill raises serious concerns for participants like my child.
Section 34A — Minister can reduce whole support categories
My child’s supports are highly interdependent.
Physiotherapy, occupational therapy, psychology, continence consumables and functional supports work together to maintain baseline functioning.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1010
If broad category reductions are applied, this could remove essential supports without adequate consideration of the cumulative impact.
For my child, reducing one category would trigger deterioration across multiple areas including mobility, continence management, psychological wellbeing and hospitalisation risk.
This provision risks arbitrary reduction of supports for participants with complex intersecting disability needs.
Section 33(2EA) — Minister can cap supports by cohort
Participants with rare congenital conditions do not fit standardised cohort assumptions.
My child’s support requirements are significantly higher than average because of:
• severe congenital complexity • interstate specialist care • prolonged mobility deterioration episodes • extensive advocacy requirements • lifelong multi-system involvement If support caps are imposed based on broad participant categories, my child’s essential supports could be restricted to levels that are clinically unsafe.
Administrative caps cannot appropriately account for rare and medically complex disability.
Section 34(1)(aa) — “Directly arising” test
This is one of my greatest concerns.
My child’s needs arise from overlapping congenital disability impacts.
For example:
• psychology supports are required due to disability-related trauma, infertility, medical trauma, body difference, social isolation and transition-to-adulthood impacts • physiotherapy supports chronic muscle locking and deterioration arising from structural congenital disability • carer-supported coordination is necessary because of the communication complexity created by lifelong medical trauma and extensive surgical history A narrow “directly arising” interpretation risks excluding legitimate supports simply because impacts are interconnected.
Complex disability does not occur in isolated categories.
Section 50A — Auto-renewal and loss of unspent funds
This provision creates major risk.
My child often requires equipment, approvals and specialist coordination across interstate systems.
Delays are common.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1010
If unspent funds are removed automatically, supports already in process could be lost before delivery.
This could affect:
• wheelchair provision • specialist equipment • home modifications • therapy blocks delayed by interstate coordination • consumables ordering continuity Once lost, delayed supports could not simply be restored.
For medically complex participants, delayed spending often reflects system complexity, not lack of need.
Section 48A — Restricted reassessment
My child’s condition is complex and variable.
Periods of muscle locking, pain escalation and deterioration can rapidly increase support needs.
If reassessment pathways are restricted, we may be unable to respond quickly to clinical decline.
This would place my child at serious risk of avoidable deterioration.
Sections 40A / 30(1A) — Suspension and revocation
Suspension of access or funding would have immediate severe consequences.
Without continuity of support my child would lose access to:
• physiotherapy preventing mobility decline • continence consumables • disability-related psychological support • functional capacity maintenance Even temporary disruption could result in significant physical deterioration and crisis-level escalation.
Section 9B — New eligibility test from 2028
This creates profound uncertainty.
My child’s condition is permanent and non-correctable.
However, because management is ongoing through surgery and specialist intervention, there is concern that participants like my child could be unfairly reassessed as though ongoing intervention suggests “treatability.”
Ongoing management does not equal potential recovery.
For congenital structural disability, treatment is complication management only.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1010
Eligibility reform must explicitly protect participants with lifelong congenital conditions.
Schedule 5 — Minister can alter operation without parliamentary scrutiny
Families caring for medically fragile participants need certainty.
Allowing substantial operational change without full parliamentary oversight creates instability and fear.
Our family already lives under constant medical uncertainty.
We should not also face policy instability that could remove essential supports with limited scrutiny.
Transitional provisions are not enough
Labelling arrangements “transitional” does not guarantee protection.
Families like mine need explicit legislative safeguards ensuring:
• no reduction of existing clinically necessary supports without robust individual evidence • preservation of delayed but approved supports • protections for rare and medically complex participants • clear review rights • recognition of cumulative and indirect disability impacts Impact on carers and families
The proposed changes fail to adequately recognise carer capacity.
I am already physically unwell and at breaking point.
Any reduction to my child’s supports would shift unsustainable burden onto a family already managing significant disability, illness and financial strain.
This would increase the risk of:
• carer collapse • participant deterioration • hospitalisation • crisis intervention • greater long-term system cost Conclusion
The NDIS was designed to protect participants with profound lifelong disability from exactly this kind of instability.
For participants with rare congenital complexity, support reductions do not create independence.
They create deterioration, crisis, and preventable suffering.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1010
I strongly urge amendment of this Bill to ensure medically complex participants with permanent congenital disability are explicitly protected from these risks.
Sincerely,
Parent and full-time carer