National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 92
23rd May 2026
Good morning.
Right now, the NDIS means my 15-year-old daughter has a brighter future for transition out of school and into adulthood. She has Cohen Syndrome leading to significant functional impacts across all domains. She is functionally more like a six-year-old, although is less able to complete self-care tasks or consider safety risks than a typical six-year-old. Additionally, she is going blind, is a high falls risk and engages in behaviours which may lead to social and personal risk.
As a parent of a participant, I am keenly aware of the disparities between the funding historically given to others with less impactful disabilities, the providers who are profiting from those in need and the criminal infiltration occurring. Consequently, I agree with many of the proposed changes to the NDIS to ensure it delivers to its intended purpose and protects those who need it; however I feel there is a lack of clarity to what these changes might mean.
These are my concerns:
As a single parent currently studying at university for an undergraduate degree, my timetable changes every trimester. Without funds rolling over if unused, it will be very difficult for people like me to use funding flexibility to ensure safe supports are in place for our children at times when timetable changes force unavailability of informal care outside of school hours. Funds should roll over until end of plan dates and then be reabsorbed if not used, or day to day flexibility will be lost for participants. The change to PACE funding release had already caused significant impact to us when it was introduced to our plan earlier this year. This occurred simultaneously to my starting a long block placement, almost forcing an end to my studies after three years completed. Please do not underestimate the impact of these sorts of changes on families, the psychological repercussions of having no flexibility to support the ability to plan for and imagine the future, it is demoralising on top of already stressful life situations.
Social, civic and community participation support changes. This is unclear. For people living with multi disability, like my daughter with physical, intellectual and visual impairments; even with capacity building in place who are unlikely to ever engage in social civic and community activities unsupported. This would mean informal supports are further hamstrung in care giving by having to provide continual and never-ending side by side support to ensure the safety and
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 92
engagement of their loved ones; thus, never having time for their own social, civic and community participation, leading carer burnout, financial insecurity and depression. These supports are essential.
In summary, funding needs to be flexible for its time of use, and social, civic and community participation is absolutely necessary for participants.
Yours sincerely