National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2118
SUBMISSION FOR NDIS
I am the mother of four adult children. Three have a very rare genetic disability called Congenital Disorder of the Glycosylation1a that affects every muscle in their bodies & which affects their speech, coordination & learning. It is similar to cerebral palsy.
They range in age from 43 to 53. They also have complex medical conditions.
My husband & I have had to fight every day of their lives for basic care for them.
To enable us to be available for their frequent emergencies & therapy sessions we have been running our own small businesses for around 40 years.
They are incredibly brave & loving people & very determined to contribute to society.
When they were little I set up a support group for families with children with disabilities in sheer desperation so as to get enough people to help lobby for basic therapy services for them.
When they were school age we lobbied to get a special education unit put in their primary & high schools.
They are all creative so 24 years ago we set up an art gallery for them which now displays their art & that of dozens of other local artists, including those with disabilities & indigenous artists.
We have nearly always funded their medical & therapy bills out of our own pockets, including the art gallery.
The NDIS has been the most incredible support for us! We have felt exhausted & despairing for so many years & now have support workers to share the burden.
We are devastated that this government is attacking the most vulnerable in our community! Please don’t penalize our children & so many of our friends’ children & their exhausted families.
Why not get rid of the fraudsters? Only allow Australian citizens or long term residents to be providers. Check they have no criminal background. The founder of one of the groups my children went out with was a convicted pedophile! He had been operating for 6 years!
Please register providers & make sure they have appropriate qualifications but don’t make more unnecessary red tape. Conduct frequent audits.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2118