National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 969
Sunday, 24 May 2026
The NaƟonal Disability Insurance Scheme Amendment (Securing the NDIS for Future GeneraƟons) Bill 2026
To the Senate Inquiry,
My name is , and I am wriƟng alongside my wife as the parents and full-Ɵmecarers of our daughter, C.
C is 14 years old and lives with profound disabiliƟes. She has been diagnosed with AuƟsm Spectrum Disorder Level 3, severe intellectual disability, ADHD, anxiety, motor Ɵc disorder, suspected epilepsy, and she is non-verbal. She requires 24/7 supervision and support for every aspect of daily life.
Our daughter cannot independently dress, shower, toilet, eat safely, communicate her needs, or understand danger. She is vulnerable every minute of every day. Even eaƟng is dangerous for C, because she overstuffs food and struggles to recognise choking risks. She cannot safely navigate the community without close supervision. Puberty has introduced enƟrely new challenges around menstrual hygiene, body awareness, emoƟonal regulaƟon, and personal care.
The NDIS has not given our daughter luxury or excess. It has given her stability, safety, dignity, and the ability to parƟcipate in life at all.
The support workers funded through the NDIS are not opƟonal extras. They allow C to safely engage with the community, follow rouƟnes, regulate emoƟons, and maintain her wellbeing. OccupaƟonal therapy and speech therapy are criƟcal because C is sƟll trying to learn basic life skills most people take for granted — safe eaƟng, communicaƟon, hygiene, emoƟonal regulaƟon, and expressing needs and consent.
Without these supports, our daughter will not “become more independent through resilience.” She will deteriorate.
Her psychiatrist has already warned that previous reducƟons in funding caused “significant behavioural difficulƟes and funcƟonal impairment”. He stated clearly that C “cannot afford to lose any of her current supports/intervenƟons or would be at high risk of deterioraƟon.”
These proposed cuts terrify families like ours.
Page | 1National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 969
Sunday, 24 May 2026
The National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
What many people do not see is the toll this takes on carers behind closed doors. My wife and I are both self-employed small business owners operating two stores while also caring for C full-time without support from extended family. Most weeks involve 14-hour days, 7 days a week, juggling paid work, unpaid work, business administration, therapies, appointments, supervision, and the endless responsibilities of caring for a child with profound disabilities.
The emotional and physical toll is immense. My wife- has developed high blood pressure requiring ongoing medication, and she also suffers from diverticulitis, which can leave her incapacitated for days or even weeks during flare-ups. Her most recent episode occurred in January
- Despite this, there is no option for us to simply stop. C’s needs continue every hour of every day.
There is also a broader economic impact that appears to be overlooked in these proposed changes. If C’s support worker funding is reduced or removed, one of us may need to step away from work entirely to replace those supports ourselves. As small business owners already under pressure from rising operating costs and increasing tax burdens, we genuinely fear we may be forced to close one of our stores. That would not only devastate our family financially, but would also result in staff losing jobs and a reduction in the taxes and economic activity our businesses contribute to the community.
We are not asking for special treatment. We are asking for our daughter to retain the supports that experts have already determined are necessary for her survival, safety, and quality of life.
Families like ours are already carrying enormous responsibilities. Reducing support does not make the disability disappear - it simply transfers the burden onto exhausted families and leaves vulnerable children at risk.
Please listen to disabled Australians, carers, therapists, and medical professionals before making changes that could permanently harm people who have no ability to advocate for themselves.
C deserves safety. She deserves dignity. She deserves the opportunity to live a meaningful life. Thank you for considering our submission.
Page I 2