National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 3168
I am writing this on behalf of my 41 year old son, who has been an NDIS participant since commencement.
He is unable to manage his life due to significant intellectual disability and multiple disabilities which are lifelong, from birth, due to a very rare chromosome disorder.
My son needs a layer of people to manage his life. People with intellectual disability need these layers of supports (including support coordinator, plan manager to pay the bills, head support worker, support workers to manage him daily, circle of support, therapy and training supports.
He also attends an arts program four days a week.
I spend a significant number of hours every day coordinating his life, especially with continual changes to NDIS and a
tight budget and three-monthly funding. I am terrified that the expenses will exceed the budget. I feel people whoare managing their funding well and have lifelong significant disabilities should not be subjected to short funding periods. My husband has chronic health issues, and I have relatives needing our support which requires long distance regular travel.
We are very grateful to NDIS, as it has significantly changed both our son’s life and ours. We felt we didn’t need to worry what would happen to our son when we were no longer around.
The continual threat that funding will be cut is very stressful. We do agree there needs to be some changes. people and providers who are rorting the system should be removed.
Our son rents a unit, which we heavily subsidise and he is living there with his cat and support from support workers
He had his funding cut at the last assessment, and we have been juggling and getting by, but any more cuts would make it very difficult with insufficient funding for assistance with social economic and community participation as his arts program funding is under this support together with appointments, outings and shopping.
He would be isolated. in his unit by himself, most of the day as he can’t drive or go out by himself.
This is likely to cause more depression, stress, anxiety and safety than he already has.
It would severely affect his ability to attend his arts program and daily walking, which helps keep several health issues under control.
If improved daily living skills is cut it would affect his therapy and training as he was born with multiple disabilities
I-CAN assessment … my son will not be able to do the as he won’t be able to fully comprehend the questions and implications. He still has the mental ability of a child.
Thank you for considering our submission.