National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2368
SUBMISSION TO THE SENATE STANDING COMMITTEE ON COMMUNITY AFFAIRS Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submitted by: Grandparents of a NDIS participant
- Who We Are
We are the grandparents of E, a 16-year-old girl with multiple complex and permanent disabilities. We are aged 75 and 79. Over the sixteen years since E was born, our family has worked together as a team — our daughter, who is a disabled single parent, as E’s primary carer, and ourselves providing support alongside her wherever we can. Our daughter is autistic and lives with Complex Post-Traumatic Stress Disorder (C- PTSD). She is E’s sole parent and sole carer, and she does a remarkable job under extraordinarily difficult circumstances. She is unable to work because E’s care needs are full-time. Her only income is the Carer Pension and Carer Allowance. She has no capacity to fund supports herself. We are writing this submission because we are frightened. As we age, our ability to assist is declining. We worry deeply about what happens to E — and to our daughter — if the safeguards that currently hold their lives together are weakened or removed.
- About E
E has been an NDIS participant since 2016. Her disabilities are permanent, complex, and profoundly affect every aspect of her life. E was born at 30 weeks gestation. During our daughter’s pregnancy, she experienced a massive haemorrhage at 20 weeks, which resulted in Hypoplasia of the Corpus Callosum. At birth, E suffered a bilateral brain bleed — an Acquired Brain Injury that has caused lasting structural damage. The combined effect of these events has resulted in the following diagnoses: • Asymmetric Mixed Diplegic Cerebral Palsy — affecting her balance, motor coordination, and muscle tone • Left Hemianopia — loss of peripheral vision on her left side • Continence difficulties • Epilepsy — currently not well controlled through medication • Autism Spectrum Disorder, Level 2 — significantly affecting her social skills, anxiety, sensory processing, behaviour regulation, and ability to adapt to changes in routine • Cognitive impacts affecting memory, problem-solving, planning, decision- making, and awareness of danger
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2368
E can walk short distances before she fatigues and falls become a risk. For any longer distance she uses a manual wheelchair, which she cannot self-propel and requires an adult to push. She will not be able to drive a car. Her functional capacity sits below the bottom 1% of people her age across all domains. E’s current NDIS funding covers Allied Health therapies (physiotherapy, occupational therapy, speech therapy, hydrotherapy, psychology, and continence nursing), continence products, orthoses, low-cost assistive technology, and funding for Social, Civic, and Community Participation and Daily Living supports.
- What These Supports Make Possible
E’s supports are not luxuries. They are the scaffolding of her life, and without them she would deteriorate — both functionally and emotionally. Her fortnightly Allied Health therapies help her learn new skills and retain the skills she has worked so hard to build over years. Without ongoing physiotherapy and occupational therapy, the gains she has made would be lost. Her speech therapy and psychology appointments help her manage the extraordinary challenges her brain injury and autism create every single day. Her Social, Civic and Community Participation funding has enabled her to do something most teenagers take for granted: belong somewhere. Her support worker accompanies her to a dance class each week, adapting the steps to E’s physical abilities, prompting her memory, supporting her balance, and helping her stay emotionally regulated. Through this and similar activities, E has built friendships with others who share her interests and her experience of disability. For a young woman who faces daily meltdowns and aggression driven by her autism — multiple times a day — this sense of belonging and connection is not a small thing. It is essential to her wellbeing.
- Our Concerns About Specific Provisions
Section 25A(2) — The Access Test and the Fiction of ‘Available’ Treatment For the past ten years, our family has had to repeatedly demonstrate that E’s disabilities are permanent. We understand why this is required, and we accept it. But the proposed change to section 25A(2) deeply concerns us. Under this provision, a treatment may be deemed ‘appropriate’ — and therefore counted as available to E — even if she cannot actually access it, whether because of geographic location or financial barriers. This is deeply unjust. It creates a legal fiction that could be used to decide E’s impairment is not permanent because there is a theoretical treatment somewhere that she cannot realistically reach or afford. E’s mother has no financial capacity to fund treatments privately. We, as elderly grandparents on fixed incomes, do not either. The idea that a treatment exists “out there” is cold comfort when it is genuinely out of reach. Access to the NDIS should be decided on the reality of a person’s life — not a hypothetical one.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2368
Section 34(1G)–(1J) — The Parental Presumption This provision creates a legal presumption that parents of children with disability automatically provide ‘substantial care and support.’ The NDIS can then use this presumption to reduce E’s funded supports on the assumption that her mother is covering what the NDIS does not fund. Our daughter is doing everything she possibly can. She is caring for E around the clock, without employment, on a Carer Pension. She is herself disabled. She is stretched to the absolute limit. The presumption that parents are quietly filling gaps is wrong in our family’s case, and we strongly suspect it is wrong in many others. Assuming parental capacity without individual assessment risks cutting supports from children whose parents are already at breaking point. In our case, the situation is further complicated by one unavoidable truth: we are 75 and 79 years old. We are not going to be here forever. As our health declines, our capacity to assist our daughter and E will diminish. When we are gone, that contribution — whatever it currently amounts to — disappears entirely. The NDIS plan needs to reflect E’s actual needs, not assumed family capacity that is already fragile and will one day be gone.
Section 25B(4) — Alternative Supports We are concerned about provisions that would allow the NDIS to direct participants toward ‘alternative supports’ in place of the scheme, even where those alternatives are not yet operational or do not meet a person’s individual needs. E’s needs are highly specific. Her disabilities interact with each other in complex ways that take a full multidisciplinary team to understand and respond to. A generic alternative support — even a well-intentioned one — could not replicate what her current allied health professionals provide.
Section 59B(4) — Automated Decision-Making We are deeply troubled by the proposal to authorise automated systems to make decisions about NDIS participants that involve ‘discretion,’ ‘evaluative judgement,’ and forming a ‘state of mind.’ No algorithm can understand E. It took years of work by a team of skilled professionals to understand the interaction between her brain injury, Cerebral Palsy , her epilepsy, her autism, and her daily lived experience. A computer that processes her case without that understanding could cause serious, irreversible harm.
Functional Assessments by Unfamiliar Assessors We are also alarmed by proposals requiring functional assessments conducted by strangers who are not part of E’s established allied health team. For a young woman with Level 2 ASD, severe anxiety, and significant difficulties with change and unfamiliar people, being assessed by a stranger who does not know her would be acutely distressing. She would struggle profoundly to understand what was being asked of her. There would be a real risk of physical and emotional harm — to E, and potentially to the assessor. Understanding E requires knowing her. That knowledge has been built painstakingly over years by the professionals who work with her consistently. An assessment conducted without that context would not produce an accurate picture of her needs.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2368
Schedule 5 — Transitional Protections We note that the transitional protections for participants affected by the access changes are not written into the Bill itself. They sit in a Ministerial rule-making window, are temporary, and cannot be renewed once the window closes. This gives us no confidence that these protections will endure. For families like ours, that uncertainty is deeply destabilising.
- The Human Cost
If E’s funding were reduced or removed, the consequences for our family would be catastrophic. The skills E has built over years of intensive therapy would be lost. She would become more isolated. Without her community participation supports, she would lose the friendships and sense of belonging she has worked so hard to develop. Her mental health — which is already fragile — would deteriorate significantly. For our daughter, who already has nothing left in reserve, a reduction in E’s supports would push her beyond what she can bear. She has no safety net beyond us, and we are old. We do not say any of this for dramatic effect. We say it because it is simply true, and because the Committee deserves to understand what the real-world stakes are for real families when legislation of this kind is passed.
- What We Are Asking the Committee to Do
We ask the Committee to take the following actions: • Reject or substantially amend section 25A(2) so that a person’s genuine inability to access a treatment — due to financial or geographic barriers — is taken into account when assessing whether their impairment is permanent. • Reject or substantially amend sections 34(1G)–(1J) to require individual assessment of actual parental capacity before any presumption of family contribution is applied to reduce a participant’s funded supports. Family circumstances change. Age, disability, and capacity must be assessed on their actual facts, not assumed. • Reject the provisions in section 59B(4) that authorise automated decision- making for decisions involving evaluative judgement about a participant’s needs and supports. Decisions of this complexity and consequence must be made by qualified allied health professionals. • Require that functional assessments be conducted by qualified allied health assessors with genuine knowledge of the participant, or with substantive input from the participant’s established treating team. Assessments by unfamiliar strangers are not appropriate for participants with complex communication needs, severe anxiety, or significant difficulty with change.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2368
• Write transitional protections into the Bill itself, not into temporary Ministerial rules. If these protections matter — and they do — they deserve the permanence of primary legislation. • Delay passage of the Bill until an independent review has confirmed that its provisions comply with Australia’s obligations under the UN Convention on the Rights of Persons with Disabilities and the UN Convention on the Rights of the Child, both of which Australia has ratified.
- Closing
We are not policy experts. We are an elderly couple who have spent sixteen years watching our granddaughter and assisting our daughter navigate a system that, at its best, has given E a life with real participation, dignity, and possibility. We are asking you not to dismantle what has been built. E deserves a future. So does our daughter. This Bill, as currently drafted, puts both at risk. We urge the Committee to listen carefully to families like ours before it proceeds.
Submitted May 2026