National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 942
About me I am a 45 year old parent and carer of my son with severe disabilities
Current supports Therapy includes physiotherapy occupational therapy and speech therapy
Multiple support workers with years of experience with our families issues
Assistive technology includes eye gaze for communication and learning and a wheelchair a hydraulic bed with lift and side supports a hoist for manual transfers a standing frame for therapy related to a full spinal fusion Accessible vehicle A bath table with hydraulic lift and supports A suction unit for 24 hour a day tracheotomy support
Functional capacity and access
Assistive technology is absolutely essential for the day to support of my son
Without current supports in place our live would drastically change both mine and more importantly my sons health would decline rapidly it’s taken years to get to a level of care that has given him a safe and healthy as possible life and to lose it all would be nothing short of catastrophic Wheelchair modifications and repairs are essential we simply can’t live without it Sensory supports help my son communicate and be included Therapies are essential for his equipment adjustments and overall health in general also for communication and learning supports using his eye gaze
Disability supports on a daily basis
Support in the house has completely changed our life it’s given us access to the community which was not possible before due to the high needs and effort required for simple tasks Just going to the supermarket or a doctors appointment is impossible to do alone as someone must sit with my son while in the car to support the tracheotomy
A supported routine in the home with enough people to help with medical care and daily self care needs
Being able to participate in more social activities was impossible without current supports
Participant choice and control
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 942
Choosing providers is very important to maintain the current level of care in my sons life losing this would greatly impact his health and general wellbeing and also the mental effects of the change of routine which has been in place for years
Flexibility when needs change
As my son has grown his needs change rapidly and requires more support also post surgery there’s always more support needed or during the winter months when viruses and the flu is prevalent it’s important that someone understands how big an impact these things can have on someone with severe disabilities and a weak immune system
Reassessment rule’s changing would significantly affect supports during these difficult time periods and would have a huge impact on his health
The affect on me as a carer would also be significant and I would not be able to care for my son if I was burnt out and also the mental strain of dealing with everything on my own would be devastating
Being a single parent is also another issue for caring for my son I’m all he has and the support we have in place has allowed us to have some kind of normal life
When I have been sick having supports in place was very important
Extra support after his full spinal fusion was needed and we wouldn’t have got through without it
My son has grown comfortable with and trusts the current support network we have changing this would have a significant impact
Administrative processes
If the system becomes more complex with more paperwork more questions and assessments this would also create more stress and mental breakdowns and also delay the availability of the needed support
Evidence required for assessment in my case in very straightforward he has a permanent disability that requires life long care and can’t do anything for himself we should only have to prove this once and if anyone met my son they would see that and it would save a lot of stress and not to mention wasting time with too many questions that don’t relate to our situation
Overall it has taken years to get to a point where we can support my son effectively and also support our family the impact has been life changing