National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1314
SENATE SUBMISSION
NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026
About our family
My name is — I am the cousin of , who is 32 and has Cri du Chat syndrome. lives at home with my Aunt and Uncle in Cammeray. ’s NDIS funding allows her to have access to support workers, physical therapy, speech therapy and social and community programs - all of which are essential to her being part of a community of people who are facing similar life challenges as she is, but also as an active and valued member of our wider society.
Why I am concerned about this Bill
I am writing to oppose provisions of the NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026 that would directly harm our family and many others like us.
1. The 50% cut to social and community participation funding — the day program is not optional For adults with Cri du Chat syndrome living at home, the day program is not a leisure activity. It is a structured, therapeutic environment staffed by trained workers who understand our family member’s communication needs, behavioural profile, personal care requirements, and medical needs. It is where develops skills, maintains social connections, and has a life of her own outside of the family home. The proposed 50% cut to social and community participation funding — which is how day program attendance are funded — would directly reduce the number of days can attend. She cannot attend at a lower level of staffing. Her care needs have not changed. The provider cannot absorb a 50% funding cut and remain financially viable. If day program attendance is cut, will be forced to stay at home, without the social interaction that she craves and needs.
2. Parental responsibility assumptions I have watched my Aunt and Uncle take on the challenges of having a career and caring for her entire life. The level of care they provide is substantial, skilled, and ongoing, and one that is often not witnessed outside the family home. The Bill proposes to embed an assumption that parents will continue to provide ‘substantial care’, without any consideration of age, health, capacity, or the sustainability of the carer’s role.
More recently my Uncle has been diagnosed with Parkinson’s, which has left more of a burden on my Aunt and ’s younger sister to provide care for both and her husband. I have witnessed my Aunt and ’s younger sister take on the responsibility of being carers for in ways that respond specifically to her needs, whilst trying to balance their own health, mental health and careers. All of which are a juggle for those of us without the additional challenges of someone with Cri du Chat syndrome or any special needs.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1314
The NDIS was supposed to ensure that families like mine have backup, not that we were the backup. As my Aunt and Uncle both age and face health challenges of their own, reducing funded support is not a saving. It is the creation of a future crisis.
3. The Minister’s power to make further cuts (proposed section 34A) The Bill gives the Minister power to cut any support category by any percentage, at any time, without individual assessment and without the right of review. The 50% social and community participation cut is the first use of this power — but nothing prevents further cuts to core supports, supported independent living, or assistive technology. There is no floor. There is no independent check. This is an unlimited power over the lives of people with disability, with no equivalent protection for those affected.
What I am asking
• Reject the 50% social and community participation cut, or at minimum exempt people in structured day programs who have no alternative provision. • Remove proposed section 34A in its current form, or require individual assessment before any determination affects a participant’s plan. • Require the parental responsibility provisions to include consideration of carer age, health, and sustainability. • Maintain the right to seek plan review when a family’s circumstances change, including when a carer’s health declines.
My family’s story
is not just my cousin - I have always treated her as one of my sisters. I have watched her deal with the hardships of life (from the bullying at school to those that just don’t understand her as she has grown up) with a smile on her face and a level of positivity that no one can match.
The NDIS funding has allowed to access services that have enhanced her life and well being, and have assisted my family in providing her with a quality of life on par with those without special needs.
Her funding has allowed her to have access to support workers who help her grow and become more independent through life skills development like cooking, cleaning and shopping - things we take for granted as part of our everyday activities.
She also has access to physical and speech therapy, which has made a substantial and positive impact for her communication skills. These therapies have allowed her to have a voice in society and allow her to not be an “invisible” participant in our community.
I fear the biggest impact to ’s quality of life will be the 50% cut to social and community participation. She has for the last 5 years been an active participant in Stellar experiences, as well as Bus Stop Films. These two groups have been a huge part of her life, allowing her to be social, build friendships, have experiences that would seem out of reach and live a fulfilled life outside of the home unit.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1314
All of these services are not just essential for ’s development, well-being, happiness and day to day function, but allow my family (and those in similar circumstances) to have some respite and support in caring for those with special needs. It also gives all of us hope that , and those like her, will be able to live independent and fulfilled lives with or without us.
Yours sincerely,
Publication preference:Please keep my name private