National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1305
Submission regarding NDIS Reform Bill 2026 – urgent concerns for a child with severe disability
Dear Minister Butler,
I am writing as the mother and primary carer of a 17-year-old son with severe and permanent disability.
I understand that the Government is trying to make the NDIS sustainable. I understand that fraud, poor practice, and unnecessary spending need to be addressed. However, I am deeply frightened that the proposed reforms may unintentionally harm families like mine, and children like my son, who have profound, lifelong support needs, and no realistic alternative to the NDIS.
My son has a severe intellectual disability. He is non-verbal, deaf, not continent of urine or faeces, and requires support and supervision 24 hours per day, every day of the year. He is now adult-sized, taller and heavier than both of his parents, and his support needs are increasing as he gets older and bigger.
He cannot be left unsupervised. He cannot independently manage his personal care, toileting, hygiene, safety, communication, community access, decision-making, meals, routines, or daily living tasks. He requires constant support from people who know how to communicate with him, understand his needs, keep him safe, and help him participate in life.
My son has only one year remaining at school. This is an urgent transition point in his life.
If he does not receive the right therapeutic supports now — particularly communication support, functional capacity-building, continence-related intervention, and planning for post- school life — his long-term support needs will be much higher. Without progress in communication and continence, he is likely to require higher levels of 1:1 support in day programs and community settings for the rest of his life.
This is not only devastating for him and our family. It is also more expensive for the NDIS and the community in the long term.
I am asking the Government to understand this very clearly:
Early and intensive support for a young person with severe disability is not waste. It is prevention.
It is what gives a young person the best chance to develop functional capacity before adulthood. It is what may reduce lifetime support costs. It is what may prevent crisis, family breakdown, institutional-style dependence, and permanent loss of opportunity.
My son has been underfunded for years. As his mother, I have been too afraid to ask for a review because I feared losing the small amount of support we already had. That fear is now much worse because of the media coverage and the recent announcements about NDIS reform.
I am exhausted. I am in carer burnout.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1305
I have continued to care for my son because I love him, but the reality is that I cannot safely or sustainably provide the level of support he needs without adequate NDIS support. He requires supervision and care every hour of every day. There is no “ordinary parenting” equivalent for this level of need.
If my son loses funding, or if his funding is reduced, I may lose my job and become a full- time carer for my adult son. That would place our family under enormous financial, emotional, and physical pressure. It would also shift the cost of disability support from the NDIS onto an already exhausted parent.
This is not sustainable. It is not fair. It is not safe.
I am particularly concerned that a standardised assessment process may fail to properly recognise the true level of support my son needs. My son may cope better when supported by familiar people, routines, prompts, visual supports, communication strategies, and careful planning. That does not mean he is independent.
Please do not mistake supported capacity for independent capacity.
If a person can participate only because support is present, that support is still needed.
If a young person appears calmer because their environment is structured, predictable, and supported, that does not mean the support can be removed.
If a parent has held everything together for years through exhaustion, fear, and unpaid care, that does not mean the family has capacity to keep absorbing more.
My son’s needs are significant, permanent, and lifelong. He is exactly the kind of person the NDIS was created to support.
I ask that the NDIS Reform Bill include clear protections for people with severe disability and very high functional support needs, including:
Protection from funding reductions where a person requires 24/7 supervision and support. Recognition that severe intellectual disability, deafness, non-verbal communication, continence needs, and adult-sized physical support needs create substantial daily support requirements. A requirement that assessments distinguish between what a person can do independently and what they can only do with support. Protection for young people leaving school, where the next 12–24 months are critical for communication, continence, daily living skills, post-school transition, and long- term support planning. Adequate funding for therapeutic intervention where it may reduce lifelong support costs. Adequate respite and short-term accommodation for families experiencing carer burnout. No removal or reduction of essential supports unless a safe, funded, available and appropriate alternative is already in place.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1305
Recognition that underfunding high-need participants does not save money — it creates crisis, carer collapse, loss of employment, and higher long-term support costs.
I am not asking for unnecessary support. I am asking for my son’s disability-related needs to be properly recognised.
I am asking for the chance to keep working, to keep caring, and to keep my family safe.
I am asking for my son to have the opportunity to develop as much functional capacity as possible before he leaves school and enters adult life.
I am asking that the NDIS does not reduce support for the people who need it most.
Please ensure that these reforms do not frighten exhausted families away from asking for help, and do not leave high-needs young people and their carers to carry impossible responsibilities alone.
My son’s future depends on the decisions being made now.
Yours sincerely,