Submission 2667
Submission — National Disability Insurance Scheme Amendment (Securing the NDIS
for Future Generations) Bill 2026
To the Committee,
I work full time in a high-powered job for a not- for profit, I am the mum of two boys. including my teenage son with Down syndrome, significant intellectual disability, hearing impairment and complex support needs. He is non-verbal and requires ongoing supervision and support for communication, emotional regulation, safety, and participation in everyday life.
I am writing because I am deeply concerned about the impact the proposed NDIS reforms may have on families like ours.
While discussions around the NDIS often focus on budgets, compliance, and sustainability, I ask the Committee to understand the lived reality behind those discussions. Families caring for people with significant intellectual disability are already stretched beyond capacity, and many of us are surviving only because of the limited supports we currently receive.
My son has a lifelong permanent disability.
Recently, my son experienced a severe meltdown because he genuinely believed he was physically turning into a werewolf and urgently needed medical help. Despite attempts to reassure him, he became overwhelmed, absconded from supervision, and placed himself in a dangerous situation without understanding the risks around him.
This was not “bad behaviour.” It reflects the reality of intellectual disability, communication impairment, emotional dysregulation, and limited ability to assess danger or distinguish imagination from reality when distressed.
Situations like this are exhausting, unpredictable, and require constant vigilance and support. They can also be frightening and distressing for him and the people who surround him.
At present, I can access only two hours of support per week. This is nowhere near enough to safely or sustainably support our family.
Recently, I have had to take increasing amounts of time off work because my son is refusing to attend school and cannot safely remain unsupported. We have worked endlessly with professionals and school staff to try to understand the cause of his distress and how to help him, but the situation remains ongoing and complex.
I work in a critical role in the not-for-profit sector, supporting a service that provides lifesaving products to Australians in need. Without adequate support, I fear I will be forced to leave the workforce to care for my son full-time. This would likely require us to sell our home and rely on government benefits.
The emotional impact of this is devastating.
My work is not only financial stability — it is also my identity, connection to the outside world, and one of the only forms of respite I have. I fear for my own long-term mental health and wellbeing if supports continue to reduce or become harder to access.
The impact of inadequate support also extends significantly to my younger son, who is 14 years old.
He is an exceptionally empathetic, responsible, and capable young person. He has developed a level of maturity and emotional awareness far beyond what would normally be
Submission 2667
expected at his age. He is respected and celebrated at school for his responsibility, kindness, and reliability.
While I am incredibly proud of him, this maturity has come at a cost.
Much of my time, emotional energy, and practical attention is directed toward managing the high and unpredictable needs of his brother. As a result, my younger son regularly misses out on ordinary childhood experiences and parental support that other children take for granted.
For example:
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I am often unable to assist with homework because I am managing behavioural distress or supervision needs.
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We frequently miss his away soccer matches because I cannot safely get his brother into the car or manage transport safely during periods of distress.
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Family activities are regularly disrupted or cancelled due to disability-related challenges and safety concerns.
My younger son has had to become flexible, understanding, and self-sufficient in ways that are not fair for a child his age.
The isolation experienced by families like ours is enormous.
People often assume families can rely on friends, extended family, or informal community supports, but the reality is far more complicated. Even if I had family nearby, I understand why many people feel unable to take on the level of responsibility required to safely support my son. His needs can be unpredictable, emotionally intense, and at times physically unsafe.
As a result, our world has become increasingly small.
Without adequate support, we are often reduced to home-based activities because safely participating in the community has become too difficult to manage alone.
This is heartbreaking because both of my boys have so much to contribute to the world around them. They deserve opportunities for connection, recreation, belonging, and ordinary life experiences like any other family.
Before my son’s support needs escalated, we loved camping as a family. It was one of the few activities that gave us freedom, connection, and joy together.
We can no longer do this safely.
During a camping trip, my son absconded and was at serious risk of drowning. Since then, the fear and supervision requirements have made camping impossible without additional support.
We now have a garage full of camping equipment we can no longer use, a painful reminder of the life and freedoms our family has gradually lost.
This is why disability supports matter.
Supports are not simply about “services” or “budgets.” They are what allow disabled people and their families to safely participate in community life, maintain connection, preserve
Submission 2667
mental health, sustain employment, protect siblings, and experience the same ordinary moments other Australians often take for granted.
I am deeply concerned that increased reassessments, tighter funding rules, standardised planning, and reduced flexibility will further disadvantage families already operating at breaking point.
I ask the Committee to ensure:
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lifelong disabilities such as Down syndrome are protected from unnecessary reassessment processes,
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support decisions remain genuinely individualised,
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Community participation and behavioural supports remain funded, THIS IS PARAMOUNT (please look up the original goal of Occupation Therapy-its history and why it was successful- MORAL MOVEMENT!)
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the impact on families and siblings is recognised,
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carers are supported to remain in the workforce,
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and families are not forced into crisis before receiving adequate support. Without adequate support, families like ours become increasingly isolated, exhausted, financially vulnerable, and invisible. Yes, we will go away for you.
NDIS cuts will make us disappear for your NDIS reports. But we will surface in other ways. YOU will see increased suicides stats (already happening), increased hospital beds occupations, increase impact on emergency services an impact to the already loaded mental health epidemic. Increase impact on government benefits such as Centrelink. NO ONE is coming to help us, and its terrifying.
Thank you for considering my submission.