National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1110
Submission to the Senate Community Affairs Legislation Committee Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
My name is . I am a solo parent and the legal guardian voicing the perspective of my two children, who are both NDIS participants in the Moreton Bay region of Queensland. I am writing this submission on their behalf from a state of extreme carer fatigue and chronic burnout—having personally operated under a crushing load of physical and psychological exhaustion for the last four years. I have absolutely zero informal support networks, friends, or family backup. When considering this Bill, Parliament must look at it through the eyes of the vulnerable participants it is intended to support, and recognise that dismantling their safety nets guarantees the immediate, violent
breakdown of our family dynamic. My children represent two extraordinarily complex, high-risk, and intersecting participant profiles:
● The Perspective of a 12-Year-Old Participant with Angelman Syndrome: My son lives in a body dictated by a severe neuro-genetic mutation. From his perspective, the world is a place of profound frustration and silent vulnerability; he is entirely non-verbal, lives with a profound intellectual disability, and suffers from severe ataxia which makes his gait highly unstable and uncoordinated. His daily life is constantly interrupted by complex epilepsy, severe sleep architecture disruptions that keep him awake for hours in the middle of the night, dysphagia that creates constant choking risks, severe acid reflux, chronic constipation, and cyclical vomiting. Because he possesses an intense sensory-seeking drive and a total lack of danger awareness, his physical survival depends entirely on continuous, 1:1 physical support to prevent fatal falls and medical emergencies. ● The Perspective of an 8-Year-Old Participant with ASD Level 2 and ADHD (Ring of Fire Type): My daughter lives in a state of permanent neurological distress driven by severe global brain overactivity. From her perspective, everyday environments cause agonising sensory overload and severe emotional dysregulation, which manifest as unpredictable, explosive physical and verbal aggression. Her condition drastically impairs her impulse control and executive functioning. When this neurological overactivity intersects with high-risk behaviours, she becomes profoundly vulnerable to social and physical harm. She does not possess an internal emotional thermostat; her behaviour is a direct expression of neurological pain, requiring intensive, highly specialised Positive Behaviour Support Plans (PBSPs) and constant, trauma-informed supervision to keep her and those around her safe.
I completely oppose the Securing the NDIS for Future Generations Bill 2026 in its current form. This Bill treats disability as a line-item numbers game, completely blind to the fact that when you defund an unsupported solo carer, you drive them into the ground. If my children’s basic support needs are stripped away, the economic and structural consequence is absolute: I will be forced to completely forfeit my capacity to work, rely solely on the state through the Carer Payment via Services Australia, and ultimately face the total collapse of my family—resulting in the forced relinquishment of my children to state care. I urge the Committee to look past the administrative bureaucracy and confront how five core pillars of this Bill will actively endanger my family:
- Impact of the Securing the NDIS for Future Generations Bill 2026 on Social and Community Participation Funding ● The Participant Perspective: For my son, this cut strips away the trained human buffers who keep him physically upright and safe in public. For my daughter, it removes the specialised support workers who allow her to safely step outside her front door without escalating into public aggression. ● The Breakdown of the Family Dynamic: Halving this budget enforces absolute domestic confinement, transforming our home into a pressure cooker. This legislation will legally lock a
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1110
highly volatile, physically aggressive child into permanent close quarters with a profoundly vulnerable, non-verbal, ataxic brother who suffers from complex epilepsy. By stripping away the paid community access that serves as our family’s only physical safety valve, the government is guaranteeing a dangerous, highly combustible domestic environment where severe physical injury to the participants or myself is an absolute certainty.
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The “All Appropriate Treatments” Test and Mainstream Gatekeeping under the Securing the NDIS for Future Generations Bill 2026 ● The Participant Perspective: When my daughter experiences an intense neurological or behavioural crisis, she requires immediate, disability-specific crisis intervention and communication tools to safely co-regulate. ● The Breakdown of the Family Dynamic: This rule allows the NDIA to weaponise my daughter’s behavioural crises by labelling them “mainstream psychiatric or mental health issues” rather than disability needs. Mainstream services face severe capacity constraints, frequently resulting in multi-year waiting lists. Forcing an already exhausted, time-poor sole parent to navigate public hospital and mental health waitlists to “prove” all treatments are exhausted completely abandons a family during an active safety crisis, leaving a burnt-out mother to absorb the physical fallout of an unmediated neurological storm.
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Algorithmic Flattening via the New Standardised “Functional Capacity” Test in the Securing the NDIS for Future Generations Bill 2026 ● The Participant Perspective: My children’s safety relies on the scheme acknowledging how their distinct disabilities collide, overlap, and multiply under one roof. ● The Breakdown of the Family Dynamic: This Bill replaces detailed, custom reports from the specialists who actually know my children with a standardised, automated government checklist methodology that fails to capture fluctuating or multi-layered support needs. The funding algorithm cannot calculate compounding, intersectional risks. Because my son can physically take uncoordinated steps, the tool registers him as “mobile,” completely blind to his severe ataxic instability and high fall risk. It flattens profound medical and behavioural volatility into a generic, inadequate baseline budget, forcing me to maintain an impossible, permanent state of dual hyper-vigilance.
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Restrictions on Unscheduled Reassessments and Erosion of Appeal Rights under the Securing the NDIS for Future Generations Bill 2026 ● The Participant Perspective: Severe aggression, complex epilepsy, and genetic syndromes are inherently unstable. A participant’s needs can change overnight when a seizure pattern shifts or a behavioural baseline escalates. ● The Breakdown of the Family Dynamic: Limiting the capacity to request an unscheduled reassessment strips families of a critical safety valve. By treating our household as static and restricting urgent plan reviews to rigid “exceptional circumstances”, the NDIS is eliminating its emergency relief valves. When a safety plan fails or a medical crisis emerges, the system refuses to adapt. It legally transfers 100% of the physical, medical, and legal liabilities of an impending household tragedy directly onto the shoulders of a primary carer who has been running on empty for years.
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Automated Administrative Actions and Support Determinations under Section 34A of the Securing the NDIS for Future Generations Bill 2026 ● The Participant Perspective: This pillar represents the total administrative erasure of my children’s legal right to individualised, reasonable and necessary care based on their unique human needs. ● The Breakdown of the Family Dynamic: Entrusting budget generation and critical plan determinations to automated algorithms introduces a dangerous level of detachment from clinical reality. Automated decision-making processes lack the capacity for qualitative
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1110
discretion and contextual understanding. A faceless budget cap can instantly wipe out the specific funding that keeps my daughter regulated and my son alive, with zero legal recourse. It strips away our procedural fairness and legal recourse to fight for their safety, treating human survival as a line-item numbers game.
Parliament needs to know that you cannot run a high-risk, volatile, and medically fragile household when the sole active carer is trapped in a state of extreme fatigue and absolute burnout. If the goal of this Bill is to save the NDIS for future generations, it is achieving it by sacrificing the safety and survival of current participants. When you defund an unsupported solo carer, you break the entire family ecosystem. If these amendments pass and my children’s basic support needs are stripped away, I will be driven entirely into the ground, forced to forfeit my capacity to work, and left with no choice but to initiate a forced voluntary relinquishment of my children to state care. The Senate must realise that breaking a primary carer does not save money; it simply transfers a catastrophic financial and human cost from the NDIS to emergency health, federal welfare, and child protection systems. I urge the Committee to recommend the total rejection of this Bill. At a bare minimum, it must be amended to include ironclad, mandatory exemptions and emergency crisis-funding pathways for unsupported primary carers managing high-risk medical and behavioural intersectional participant profiles.
Sincerely,