National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 1462
To those that will listen,
I am a disabled woman, married to a disabled man, with 4 disabled children.
Prior to the NDIS we were struggling. We had a lot on our plate and were close to calling it all quits. Then the rollout happened in our area and we saw a light at the end of the tunnel. It wasn’t a smooth process, there were a lot of tears and fighting to get to where we are now. We were ready to relinquish care of our profoundly autistic child. Then after an appeal he was finally granted a plan that supported his needs and our lives turned around.
Our children being supported meant both my husband and I can cope better which has led to neither of us needing to apply for NDIS for ourselves. It has led to me being able to return to work, full time work. Prior to NDIS I was relying on Centrelink carers pension.
If we lose our children’s supports, the cost to the government will be far worse. Two of our adult children would need to move into supported living. I would have to give up work and claim the pension again to look after the two younger children. My desk job in the public service is far less demanding than being at home looking after the children which would lead to a decline in my own health.
As well as the supports making our lives better, they have given us hope. The children thrived in intensive therapy when young. While still very much disabled, they are functioning at a higher level thanks to the therapies received. The non-verbal child learnt to speak. He went from total incontinence to now only night time accidents. Without the therapies when young their support needs would be even greater now.
I do not support the Bill.
The 50% cut to social and community participation would have a dramatic effect on my young adults. They already are so isolated. Prior to us finding supports for them, the decline in their mental health was intense. There were hospital admissions and suicide attempts. Once supports were found they improved dramatically. They feel connected to their community now. I fear if the cuts are made we will quickly go back to how it was and this will cost the health system a lot when we are back to hospital admissions.
Self-management is also important to us. We live in a regional area and there is limited supports available. If our workers have to register I fear we will lose them. It is not worth their time and money to register if they only work a few hours with 1 client.
The chance to appeal a decision being taken away is absurd. My child who was totally incontinent (and not at a young age, this was well into primary school), was given a first NDIS plan of $3000 for the year total. This wouldn’t even cover his nappies for the year. We had the chance to appeal. The person we had cover the appeal for him was a disgrace and told me the NDIS won’t cover nappies as it is just lazy parenting. Knowing that this child had both older and younger siblings who all toilet trained at the appropriate age. They did lose their job and we were
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 1462
given another chance to appeal which led to an appropriate plan. Had we not had that chance to appeal, I can guarantee you that relinquishing care would have been our next step.
Having an “algorithm” decide on a person’s future is not ok. We need people who understand disabilities. We also need to account for errors, whether it’s human error or computer error, they happened, and people need a chance to appeal that.
I agree that there are some changes needed, but taking away support from disabled people is not the answer. Investigating the fraud would be a better start.
The fear that families like mine are currently living with is not ok. Please listen to the disabled community and don’t ruin our NDIS.
Kind regards,