National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 506
I am the carer and NDIS nominee for my 34 year old son.
He is autistic (level 2) with coexisting ADHD, treatment resistant depression and anxiety, agoraphobia, PTSD, expressive and reception language disorder. His functioning is low. His presentation is complex. He cannot independently engage in self-care or other daily living tasks. He receives the DSP. He is socially isolated. His only informal support is me, his mother. I am 69 years old. I am past carer burnt out. He has limited engagement with his father.
He experiences severe overwhelm and frustration which results in severe autistic meltdowns. He will scream for hours, throw and break items, damage property (in the former family home, every window and door was broken repeatedly) Photos can be supplied. To self regulate, he would bang his head repeatedly on walls and even windows which resulted in significant injuries and Emergency Department presentations.
Concerned neighbours called the police on a weekly basis. They would attend but there was nothing they could do as it was disability related severe distress and, in their words, “services need to step up”.
During one of these severe meltdowns, my son accidently set fire to the bungalow he lived in at the back of the family home. Everything was lost, and he suffered smoke inhalation and was taken to hospital then discharged to the street. He could not return to the family home as it was also affected by the fire and he was completely traumatised by this near death experience.
In desperation, we secured a small flat for him, but this only lasted a short time as neighbours complained about the noise and his behaviour and he had to leave. He was then homeless and could not cope at all so I travelled with him in motels.
During this time, he had a small NDIS package. It was obvious that the funding was no where near adequate. We spent 18 months going through the ART process to secure the support he needed to allow him to live safely and with dignity. We sold the family home to pay for the lawyers to assist in this process.
In February 2026, his plan was reassessed and he now has near adequate funding.
This has made a significant difference.
The funding for community access is critical to his wellbeing. Without it he is totally isolated and unable to leave the house. He then spirals downwards, becomes overwhelmed and can self-harm. He cannot attend medical appointments without a support person. Many services will not see him without a support person in attendance. He needs to build his confidence, communications skills and manage his distress and overwhelm so he can safely access the community i.e. going to shops, taking public transport, etc and he needs a support person to guide him with this. He is not safe in the community on his own. His distress can lead to erratic behaviour which can bring him to the attention of police which is a dangerous escalation.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 506
His current supports are working well, and he is beginning to venture out into the community with their support. This foundation needs to build on and continue.
Along side support workers, my son is working with an OT, Speech Pathologist, Positive Behaviour therapist and Psychologist. These are essential in building his capacity.
Without the continued current level of NDIS support my son would:
Be at risk of significant harm Risk of homelessness Risk of involvement in the Criminal Justice System Risk of death (suicide) Risk to the community
It is unsafe and impossible for me to take the place of NDIS supports. He can become dysregulated and volatile with me while he accepts and cooperates with the carefully chosen support workers and therapists. They have a good relationship with my son, and we can see the improvements in his daily function, and wellbeing. We need this to continue so as he can become more independent and able to live safely. An independent assessor from the NDIA assessed him as needing a minimum of 8 hours of one-on-one support every day to allow him to access the community, support the development of daily living skills, and allow him to live safely in the community. This is a bare minimum. They also assessed him as needing weekly OT, Speech Pathology, Psychology and Behaviour therapy. It is essential that these supports continue.
We, as a family cannot survive without the continued current level of support of the NDIS.