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

Submission 3906

My name is Janet Judd, I am the plan nominee for my son Tom Cummins.

The ndis has meant our son can be as independent as possible from us.

Background to Tom.

He has Pura syndrome (a spelling mistake on chromosome 5) he is non-verbal, uses augmentative alternative communication (he has a normal IQ). He is non mobile (needs a wheelchair to access life with an attendant pushing him), and has a tube (PEG) in his stomach for all his nutritional needs. The only intentional movement he can make, is a nod or shake of his head indicating yes or no. He has multiple seizures each day and requires oral suctioning for increased saliva, to prevent him from developing aspiration Pneumonia.

With what seems insurmountable daily struggles, our son, with the assistance of his support workers, designed, raised money and launched an accessible platform for those with disabilities to view entertainment. (please see below photo). Without the NDIS (Social and community participation), Tom would not have been able to see the gaping hole in the lack accessibility at events. He has improved life for many.

I am very concerned about the changes to the proposed NDIS Bill .

1. The 50% cut to social and community participation would mean that my son, who is unable to move unaided, would be left alone. He would be at risk of dying due to his intractable epilepsy and increased oral sections.

2. The minister’s new powers to cut funding without an appeal are against the basic premise that the NDIS was set up. Choice and control and reasonable and necessary. It seems that all the power will be in hands of the minister and once again those people with disabilities will be considered second rate citizens. It feels like natural selection slowing seeping into our society.

My husband and I are in our early 60s, we have sacrificed our relationships and careers to look after our son, who we love dearly. He is our responsibility.

But who will look after him when we are gone, when the NDIS is crucified in this new BILL.

Please think very carefully about the vulnerable families who at the moment are not sleeping at night. They worry about how they will continue to look after their family

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

Submission 3906

member if supports are cut. Carers are already financially disadvantaged and they generally have less superannuation due to having to care for their family member. The financial burden is added to the physical and psychological burden.

Please consider getting choice and control back into the conversation. Reasonable and necessary are guidelines that can be used by all participants to know how they can best use their plan.

Regards Janet Judd