National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 969
Sunday, 24 May 2026
The Na\u0357nal Disability Insurance Scheme Amendment (Securing the NDIS for Future Genera\u0357ns) Bill 2026
To the Senate Inquiry,
My name is , and I am wri\u0357ng alongside my wife as the parents and full-\u0357me carers of our daughter, C. -
C is 14 years old and lives with profound disabili\u0357es. She has been diagnosed with Au\u0357sm Spectrum Disorder Level 3, severe intellectual disability, ADHD, anxiety, motor \u0357c 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 ea\u0357ing 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 en\u0357rely new challenges around menstrual hygiene, body awareness, emo\u0357onal regula\u0357on, and personal care.
The NDIS has not given our daughter luxury or excess. It has given her stability, safety, dignity, and the ability to par\u0357ipate in life at all.
The support workers funded through the NDIS are not op\u0357ional extras. They allow C to safely engage with the community, follow rou\u0357ines, regulate emo\u0357ons, and maintain her wellbeing. Occupa\u0357onal terapy and speech therapy are cri\u0357ical because C is s\u0357ll trying to learn basic life skills most people take for granted — safe ea\u0357ng, communica\u0357ion, hygiene, emo\u0357onal regula\u0357on, 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 reduc\u0357ions in funding caused “significant behavioural difficul\u0357ies and func\u0357onal impairment”. He stated clearly that C “cannot afford to lose any of her current supports/interven\u0357ons or would be at high risk of deteriora\u0357on.”
These proposed cuts terrify families like ours.
National 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 2026. 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.