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

Submission 1426

May 28, 2026

(NDIS since 2019) Cri du Chat Syndrome

What will happen to – 50% cut to social and community participation from October 2026

will be at a loss and we as parents will be devastated.

What little social enjoyment she has managed to secure in her life will be shattered. There will be a feeling of betrayal and sadness toward the system that has let her down. She will not understand fully why she cannot participate in some of her group activities. She will feel alone, no longer being able to experience her somewhat limited social contact that was part of her life for the last 7 years. She has grown more confident throughout the introduction of NDIS. She is starting to feel she belongs and can participate like a “normal” person. This gives all of us hope.

The mental impact of this not only affects but her whole family. We are her aging parents. I am caring for my husband who has Parkinsons. I can barely cope with this care and I know since my husband’s illness is progressing, I am spending less time supporting . If this funding reduction happens, I will see myself in a very desperate situation. It is impossible to fully appreciate what this funding provides unless you are in our position. It gives us security and time to stop and breathe a little knowing this support is there to help in so many ways. It helps and us keep mentally sane.

It means I will have to be her friend and social companion for all the things that I myself may not wish to attend or do and I am already limited with my care commitments elsewhere. This is going backwards for and limiting her to explore her ongoing independence.

One of the most difficult things people with disabilities experience is loneliness and this funding reduction could put a lot of people in that position. This destroys their confidence and makes them isolated. It is soul destroying.

Please understand this social aspect is a whole part of ’s life and world. It’s a little world for her so please do not take any part of it away.

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

Submission 1426

Eligibility Reassessments from 2028.

I would find this type of reassessment to be very emotionally draining. I think eligibility should be based on medical diagnosis and not just on functioning capability.

My daughter was officially diagnosed at 3 years of age. At primary school level, she was again tested. I am told by her psychologist that she has a moderate disability, IQ of around 52.

might seem to be high functioning for anyone who spends about 15 minutes with her. She can function well on a task for a very short period of time under supervision. Is she functioning enough to lead a normal life?

The answer is NO. She would not be able to leave home and live alone. She does not pursue a career. She does not travel on her own. She most likely will not marry and definitely will not have a family. That to me is a normal functioning life for someone who is fully fledged.

Everyday we prepare to have her put together ready for 3 hours of work. Everything is stage managed. If anything unexpected happens during the day that is not part of her routine, she would struggle and not cope.

Why do we have to proof has a disability to gain access to funding. She should not have to be reassessed to be reminded of it. She has lived her whole life since birth in a “compromised” way already. It’s hurtful and humiliating.

I understand why these reassessments are going to take place. I have heard a lot in the media where people are abusing the system and claiming to be disadvantaged. In my very humble opinion people with medical genetic diagnosis should at least be spared that trauma. ’s condition is not curable nor can it improve. It can only be maintained at a level with whatever interaction and resources we expose her to.

I am truly grateful for the NDIS support which receives and sincerely hope the steps being taken in the future ensures the right people get the support they need.