NDIA Accountability Project

Family experience of intellectual disability and ASD Level 2 requiring support coordination

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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submission 2254

Question Submission to the Senate Community Affairs Committee

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submitted by a person supporting a person with lived experience of disability

I write on behalf of my mother and 2 siblings in relation to our son/brother who has been on the NDIS scheme since its inception into our area 2014. Our son/brother has diagnosed intellectual disability and (thanks to the NDIS) a recent diagnosis of ASD Level 2 which explain so much about his presentation.

Our brother is 50 and for the first 38 years of his life had no supports other than what the family could offer and also approximately 5 years in a special school after struggling in mainstream school for the first 9 years of his education.

To compound matters, our father died prematurely and suddenly leaving my mother with 4 young children to raise.

Our brother went on to work in a supported employment which was great but the reality is that his functionality has always remained limited because there were no goals for him to work towards and no supports to help him achieve any goals.

All this changed for the better once our brother became an NDIS participant, and particularly changed in a positive trajectory once my mother had the benefit of support coordination.

In the last 12 years the change in our brother can not be overstated. He began to show signs of happiness. He began to smile. He began to interact with others. He began to be more sociable. He began to be able to express himself. He demonstrated more confidence in himself. He started to learn how to swim – a skill that most Australians take for granted. For the first time in his life, he began to have a few people he could call friends (outside of his family unit). He began to participate in community activities because he had the support to travel there and back. He began to feel like other people in that he could go to places to work at his ability.

Our brother is an absolute NDIS success story. Our mother who is quite elderly now, has always worried about her son particularly in the context of her other 3 siblings going on to get married, have children etc. Over the last 12 years these fears have

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submission 2254

been largely dissipated and for the first time we began to feel he will be supported and be ok.

Furthermore, our son/brother is the happiest version of himself that we have seen. Our brother has significant social and communication difficulties but with the support of the NDIS his goal is to now remain living in the family home independently. This is a simple, yet so-important objective, and one that I hope our policy makers can appreciate.

CONCERNS

  • The rate of change being proposed

  • Cut backs to social and community participation - an area that our brother has really needed support with

  • Changes to support coordination – a component of the NDIS that has really benefited our family; we had absolutely no concept of what services our brother needed nor how to access them prior to our sister being suddenly appointed Support Coordinator. Given the complexity of the scheme, someone like our brother cannot possibly manage without the dedicated support of someone in this role; (it has been difficult for our sister, and she has no intellectual disability)

  • The introduction of the iCAN tool to generate funding levels: Our brother is very good at masking what he can do when he actually can’t. We have a fear that the ICAN assessment will rate him at a much higher level than he is actually functioning with. Our brother learnt how to mask his disability to an extent capable of fooling the casual observer, such as providing vague responses to fool people into thinking he is coping fine, even to the extent of misrepresenting what he is capable of doing, or answering in ways as if he has understood what they were asking him, when he in fact has not comprehended any of the conversation

  • The impact all the changes will have on our brother who does not cope well with change

  • Anxiety around electronic plan development. It is like the robodebt scheme waiting to happen again.

CONCLUSION

We do support that changes need to be made to make the NDIS sustainable. However, targeting disabled people rather than areas of money wastage and those doing the wrong thing is not the way to go about it.