National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 1874
I am writing to you with urgent concerns for the proposed bill to change the NDIS. It’s hard to capture in words how important my son’s NDIS supports are to maintain his safety, health, development and quality of life but I will endeavour to do so succinctly, with reference to specific parts of the bill.
My son is seven years old and has Angelman syndrome which involves severe intellectual and physical disability, epilepsy, sleep disturbance and lack of speech. He is tube fed, uses a wheelchair and walker and is unable to complete any element of personal care independently. He relies on 1:1 assistance from a familiar adult trained in his care, feeding, communication, manual handling and health needs.
If Minister Butler reduces social, civic and community participation budgets by 50%, my son (and by extension, his two younger sisters) will not be able to leave the house unless both parents are available. One adult simply cannot safely supervise two- and four-year-old children and help him to mobilise, communicate, feed and stay safe in a public place. This would mean he can’t go to the pool or practise walking at the park, both of which are essential for his ongoing gross motor skills. Playing and socialising is essential for a child’s development and wellbeing; my son needs this as much or more than his peers but if this bill passes, our family will be virtually trapped at home outside of school hours, hidden from the community and socially isolated.
If the NDIA pushes further supports back onto parents as “parental responsibility”, the impact on our family would be significant and far-reaching. Already, even with support worker funding, we provide extensive and complex support to my son day and night. Even when he is not physically in my care, as his primary carer I carry the burden of indirect care: 6-10 hours a week of managing his NDIS supports and plan reviews; coordinating and communicating with therapists, health services and educators; ordering and claiming continence, feeding and therapy supplies; maintaining, repairing and trialling assistive technology and so much more. It is already exhausting and stressful managing a household of five, teaching, and my son’s therapy and medical appointments and care needs. I have gone from being a lead primary school teacher, to only doing minimal casual teaching, because so much of my day is taken up with this indirect care. If support worker hours were reduced, i would cease to work altogether and lose my registration. His sisters would also be affected, as i would have even less time to engage with them, take them to swimming lessons etc; it would be a constant tyranny of the urgent, struggling even to meet everyone’s basic needs for health and safety. I have already sustained manual handling injuries that have resulted in ongoing pain in my elbows, requiring physio and OT appointments for the past two years; with less support for this manual handling, these injuries would likely worsen and my capacity as a carer be reduced. Our informal supports cannot replace support workers for my son as his complex care needs require a lot of training and almost daily practice to maintain skills and keep up with frequent changes in needs. We already rely heavily on informal supports to care for his sisters while we take my son to his many appointments; they don’t have capacity to do more. When calculating support worker funding, the NDIA must continue to consider what is beyond the normal expected support for a typically developing child of the same age and must also consider the time burden of indirect care for the participant.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 1874
If only supports with peer-reviewed research behind them are approved, people with rare diseases like Angelman syndrome would be left in real danger of missing out on essential and effective treatments and therapies. There is often little to no research available for our rare community, and we rely on research into other similar conditions, such as cerebral palsy, or the professional experience of allied health workers. There must be allowance for this context, or people like my son will be disadvantaged and left unsupported purely due to having a rare disease. Where a participant has a rare condition and research is not yet available, the NDIA must accept evidence that supports this treatment for a comparable condition or situation, and the applied professional experience and insight of the allied health worker advising it. The risk of not providing appropriate treatment or support is that the participant has a worse outcome requiring greater support and financial cost to the NDIS or health system later on.