National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2893
Our child has a genetic condition that is so rare, that naming it will immediately identify them. For that reason, this submission needs to be anonymous.
This condition does not fit into the new cookie cutter NDIS. Whereas NDIS prefers a primary condition, they have a range of coexisting conditions that combine into their disability.
Their issues include, vision, hearing, co-ordination, gross and fine motor skills, learning difficulty, ADHD, extreme growth and poor muscle tone resulting in ABC Movement assessment in the 1 percentile range for their age.
Our child currently has 15 different doctors and therapists, all required to monitor and treat her condition, so that she will continue to improve/develop and acquire the skills she will need to hopefully live a normal life.
These impacts at financial, emotional and time cost to us, both in therapy expenses, but in the time and money in care and transportation. Looking after our child is our priority, however it comes at a cost. we lose two days a week, where we should be working, creating a financial strain.
We rarely get time to tend to the house, resulting in a mess that causes us a stress just looking at it, knowing that w will never get the time to tidy up.
It seems that NDIS guidelines are written by people that have zero experience at caring for someone that needs NDIS funding. Assistance for care-givers (parents) is non-existent, causing both mental and financial strain.
Please consider both the disabled and their carers in your decisions.