National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1650
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
My son is 19 years of age, diagnosed with Fragile X and ASD Level 3. He is non verbal and incontinent with high levels of challenging behaviours.
He is surely the sort of person that the NDIS was set up for. And yet our family has been gripped with anxiety since the government has announced significant changes to the NDIS scheme.
Concern 1: The messaging around these changes has been a net that catches all and even families like ours, living with lifelong and permanent disability is worried about what this means for us. This should not have been allowed to happen. The government should be re- framing its language and discussion and giving families in our situation hope and re- assurance, not scaring the living daylight of us.
Concern 2: Despite the fact that my son is so complex, up until recently he had a dismal NDIS plan. This was because our family is so overwhelmed with his presentation and behaviour that we had no energy left to engage supports. It is only when a support coordinator offered her assistance free of charge that things have slowly begun to change for us. My son ended up with a better plan but NO SUPPORT COORDINATION! It is my opinion that the delegate saw what we were getting free support coordination so took it upon themself to decide why pay for it when someone is doing it for free! How is this fair? I bet politicians would not work for free so why should our support coordinator? I should also explain that the reason this person reached out to us in the first place is because a relative became so concerned about our situation that she took it upon herself to request help for our family from this pro bono support coordinator. So, firstly, the commentary around getting rid of support coordinators is so off the mark because a good support coordinator makes a huge difference to a family who needs help to coordinate the huge maze that comes with a complex disabled person like my son.
Concern 3: The changes to the NDIS will cause harm and even death. This may sound alarmist but it is actually the truth that politicians may not want to hear. When that family in Western Australia murder/suicided the whole family unit it was very easy to understand how and why that happened. The family had reached out for help with the NDIS and other assistance but they got refused which left the family in the position where they felt that the only way out was to kill their autistic children, their pets and themselves. After the tragic event the NDIS made a statement saying that they should have reached out for help. They did reach out for help and were sent away/declined. Yes, there may be people taking advantage of the NDIS but the overwhelming majority are not. If one life is saved because of the current system then it is worth it. I appreciate that the NDIS is costing too much and from what I
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1650
have seen there are many places to cut back on expenditure….but to leave families without the support they need is intolerable. The changes will cause harm and death. I know this because I have lived experience of just how damn hard this life is. I know how isolating it is and how depressing it is.
Concern 4: The intention for the system to become automated is absolutely scary beyond words. As described above my family was put at significant risk because of isolation. And this was WITH the system supposedly being person centred. If we and other families slip through the cracks with the current system then it is truly distressing to even bear think about what is going to happen to families under an automated system. Over and above this concern is the worry about how one’s funding level is decided devoid of story and personal circumstances. If Robo debt taught Australia anything it is how the best intentions can easily twist the wrong way. Disability is far too complex to be leaving decisions to automation. Indeed just the thought makes us families feel less cared about because the new scheme will be sending the message that we are even more isolated with less human contact under the new system.
Concern 5: The changes are being rushed in without the opportunity to involve those living with disability to a respectable level. I am rushing this submission but how many families don’t have the respite, the language skills to write, the capacity to share their concerns. The short time frame given to us to submit our concerns is truly disrespectful and quite frankly disgusting!
Concern 6: The NDIS is making changes to the scheme before alternative systems of disability support are in place. This is surely criminal. It shows just how much money is being prioritised over disabled people.
Concern 7: The NDIS are already implementing the things described in the budget / budget commentary before the legislation has even been passed! How can I make such a comment with certainty? Because in our case Support Coordination was not approved despite us being living proof that without it our family was at high risk of harm. I also know of a person who last week had ALL HIS CORE Funds removed because of the new status of affairs. The legislation is not even in parliament yet – but this participant has lost all core funding! Utter disgrace and really concerning.
Concern 8: As described in the concern above the commentary about community participation being removed from plans is extremely concerning. My son has a companion card for a reason! He is a harm risk to himself and others when out in the community. He needs a disability support worker at all times! The only thing I can think is that the government are thinking we should go back to the pre-royal commission days and keep people out of the community! It is a major concern that blanket statements are being made over something so important.
On behalf of my family and our special son we submit this statement for consideration. But I must say I fear this will all fall on deaf ears because the powers that be do not understand
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1650
disability….not even close. They have no idea what it is like to walk in our shoes. Let me tell you that these are shoes I would not wish on any other family.
By all means look for cost cutting from those defrauding the system or abusing it but do not sweep us all up with the same broom because those of us living with genuine severe, lifelong and permanent disability have enough on our plates without this fear hanging over our heads.
We need to treat those living with disability with the respect such a job demands. We are dealing with enough. The current NDIS proposal tightens the screws on our life even more. We look around and see politicians charging flights to Engagement Parties (just one example) to the taxpayer. We see money being wasted everyway we look. Yes the NDIS can be improved to save dollars but the ways the government are putting forward do not pass the pub test.
Don’t rub salt into an already open wound. Stand up for those of us living with disability. Disability can happen to any family. It happened to us and to be targeted with funding cut back because it happened to us is most distressing.
We are disadvantaged enough. Don’t widen the gap even further!