National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 3308
To whom it may concern,
I am a 47 year old mother of two young men 16 and 18 and I am writing in response to the proposed NDIS changes that were released.
I am a trained educator, a small business owner, a carer for my 9o year old grandmother and I live with chronic pain, depression and undiagnosed ASD/ADHD. I am a solo parent. The boys’ father and I separated in 2017 and we have not seen him since. I have had very little family support over the years as my father only just retired and my mother and my brother live 6 hours away by car. I have no extended family which is why it has fallen on me to support my grandmother in her twilight years.
A is 18. His journey started when he was about 3 months old and I was noting huge developmental differences between him and his same aged peers. Due to the lack of awareness of the DSM 5 and preconceived notions about autism, A was not diagnosed until just shy of his 5th birthday in 2012. NDIS was being developed at the time and I received a FaHCSIA package to support funding his therapies. Even with that funding, I spent thousands of dollars on therapies to ensure that A had the best start to life. We were lucky to be past of the first wave rollout of NDIS funding and this has been a game changer. It has reduced the financial burden on myself (on the carers pension and receiving $13 a fortnight in child support). A was able to get all the supports and has successfully completed his schooling and is currently attending TAFE to hopefully start a career as an anime artist.
N is 16. I call him my alphabet soup child. Diagnosed ASD Level 1 when he was 5, the diagnosis was a precautionary one as he was showing concerning behaviours but didn’t fit all the criteria. As he has a brother and father on the spectrum (and the diagnosing specialist suggested also his mother) the diagnosis was given. Since that diagnosis, N has been diagnosed with Tourettes, PTSD, ADHD, ODD, Conduct Disorder and Kallman Syndrome. He has been spent much of his schooling suspended due to his behaviours and we are looking forward to being able to remove him from the public education system. The NDIS has meant that I have been able to give N all the supports he has needed to keep him out of behavioural schools. Even with all the improvements, his recent assessments show him functioning at ASD Level 2.
Even with an amazing NDIS package, support services have been hard to maintain. The number of providers who offer age appropriate supports is severly lacking. As they are older, their social and community participation budgets have been heavily relied on to give them independence. Their growth has been pleasing to watch and until the proposed changes were released, I was hopeful for their future.
For my family, the proposed changes will mean their funding is cut. Their current providers have all warned me as such. This will cause damage to our family’s health, wellbeing and autonomy.
No 18 year old should be forced to rely on his mother to help him out in the community. It is embarrassing. I have worked with enough young adults in my time to know what independence and autonomy from parents does for their brain development. Removing these supports will make A at risk of regression. Should he regress, he will be less likely to get a job in the future. Less likely to live independently. Less likely to contribute to society in a meaningful way.
For N , removal of supports put him at risk of regressing to behaviours that could land him in jail. Instead of being a productive member of society who has aspirations to work for Dreamworks, get married and have children, he could become a bigger burden on society. Having a lawyer for a mother, I am well aware of the outcomes for incarcerated persons.
For my grandmother, she will have no choice but to enter a nursing facility. My support means that she can live in her own home. She will become a greater burden on the system as we do not have the
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 3308
financial ability to have her anywhere but a state funded facility. This will cost more for the
government than N and A ’s support budgets combined.My mental health has deteriorated since the announcements were made. I am currently burning the candle at both ends. While the kids are at school, I am with my gran. I have not worked since A was 6 months old. Currently, I have $105 thousand dollars in superannuation and with no old age pension for me when I am in my 70s, removing supports and asking me to carry more of the workload will mean I can never create an income that will support me and when I get too old to care for my kids, we will ALL be government burdens.
The NDIS gives the government more than what it is losing due to fraud. Does an overhaul need to be done? Yes. I have been saying it for years as I have watched participants and providers abuse services and funding. Should we all be punished for the actions of a few? No… Society will be judged by how it treats its most vulnerable people.