National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1394
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 am extremely worried about government plans to cut funds under the NDIS - a scheme that has enabled my disabled son to overcome barriers, reduce risk and harm and improve his functionality and skills.
My son has an ASD LEVEL 2 and ADHS and as such is specifically the type of NDIS participant that the NDIS is targeting to remove from the NDIS Scheme – a scheme that has been a godsend when it comes to addressing his disability support needs.
Without doubt, the NDIS is the reason my son has built his functionality, been able to overcome barriers and achieve life and NDIS goals.
Prior to being accepted on the NDIS, was out of control. He would draw all over himself, he was impossible when it came to personal care/bathing/showering etc. He would run out of the bath/shower and I would have to chase me. What should have taken 15 minutes would take an hour and more patience than I can express.
Prior to being accepted on the NDIS, was without friends because he could not understand the pragmatics of language. He did not understand the “give and take” of relationship building and everything had to be on his own terms. would have massive meltdowns if things did not go his way or if there was a change to his schedule. He could not understand change and he could not reflect on how the other person may have been feeling during a conversation. My son came extremely close to being asked to leave mainstream school based on his behaviours and if not for the NDIS quickly funding intervention I have no doubt he would not have lasted in NDIS. While there is very little detail out about Thriving Kids I can only express that the NDIS was the perfect vehicle for my son and Thriving Kids would have to duplicate what the NDIS did for the same outcomes to occur in my opinion. This begs the question why change what is already has worked for us.
Prior to the NDIS my son had more behaviours than I can mention that were essentially barriers to living his best life. And in the process his behaviours nearly destroyed our family. and his brother could not be in the same room together and the strain on the family unit was unbearable. When you have a special needs child you become a special needs family and this was very true for us. Intensive work with therapists (Psychology, OT and Speech) has (and continues to do so) has slowly but surely improved his skills, his eating habits, his socialisation, his functionality, his ability to attend to self care and his daily living skills. It has been a slow process even though he has had intensive intervention. While has improved so much he has a long long long way to go and we are stricken with anxiety about changes to the NDIS scheme because we know first hand that should things change the path we are on at the moment then the strong foundations we are working towards will be
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1394
weakened and all the improvement made will collapse much like a house with bad foundations might do.
And that would be tragic because now that he is 15 our family can see finally see the intervention outcomes that are hopeful and promising. My son is always going to need support but the next 4 years are critical to keep the current core and capacity building supports happening. We want our son to be employed and as independent as possible. Should current supports remain in place that is very possible. If things change we have no doubt that our goal would feel like being “sabotaged” and as business people who pay a lot of tax and have done so for 45 years we will be forever frustrated that we got so close to where we think our son could be. We understand things have to change so the NDIS is sustainable but please apply changes for those new to the scheme. That is, don’t derail what is already in motion for NDIS success stories like my son. If was to be removed from the scheme I don’t think our family would be able to handle it because he has just improved so much.
At this point I want to add that I myself has diagnosed cancer and have been in treatment for the last 3 years. Not only can’t withstand any changes but neither can I as my treatment is very challenging and being able to call on core support carers has been instrumental in managing this horrid help condition. In any case is not interested in his father doing what he does achieve with carers.
I am extremely worried about changes to core support in the area of community participation. We are a family with little to no informal supports. We have a brother who has significant learning needs that impacts on his confidence, self esteem and mental health so he is not able to deal with let alone support him. It is not at all appropriate that it is I (his father) who takes him into the community because I do not see other 15 year olds being supported by their parents! We already feel like we are “different” because of all the layers that come with disability. It would be even worse if different expectations would come in play as having to do tasks that other parents of 15 year olds are expected to do. Without core support in the area of community participation my son would be isolated and lonely. My son needs to be out into the mainstream community particularly now that he is in a special school (ie not mainstream). All people need to be nestled in a social scene that is a reflection of society (a blend of disabled people, dark skinned people, people of various faiths etc). This is only possible if is supported to go out into the community with carers. desperately needs core support in the area of community participation to continue.
At this point I wish to add my extreme concern pertaining to the possibility of losing support coordination. When ’s disability support needs first started to rear it’s head my wife and I had no idea what to do and where to go for help. We had issues already with ’s older brother who has learning needs but what presented with was way different to just learning needs. If not for our support coordinator to set goals, work on goals, get the right people in, make changes when changes needed to be made, put in referrals, organise assessments and reports ….. etc etc I have no doubt that we would never have come so far. My wife and I are hard working business owners but we have no experience or knowledge of what a person like needs. To this day I ring up the support coordinator every week. I
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1394
appreciate that there are some bad eggs out there but it is important to point out that there are many amazing support coordinators out there too who are committed to achieving real outcomes with their clients. I would hate to see support coordination removed because it has been our life line.
I am extremely concerned about the automated system being touted. Nothing good can come out of an automated system is such a personal, individualised field like disability. To think that one’s plan would be in the hands of technology without being privy to one’s disability journey and hopes and aspirations is particularly stressful. My son things he is superman who can do anything and will say he can doe stuff he cannot do….so the thought that the technology will rely on ’s testimony is frightening. The ICAN assessment is not gold standard despite what the government will have us believe. We are extremely distressed that between technology and the ICAN assessment our son stands a high chance of being misunderstood and underfunded which would be devastating given we are so close to school exit stage. We need to get the transition from school to employment right or else will end up on welfare – which would end up costing the government a lot more money in the long run that his current NDIS funding.
Finally, we wish to comment on the messaging of the NDIS and express how much anxiety and distress it is causing. This is distress over and above what we already experience while living with disability. This is distress I as a cancer sufferer does not need. The government needs to be managing the messaging better afterall the legislation has not even gone through parliament yet.
These are all my thoughts for you to consider. My son is disabled enough. Our family is impacted every single day. Do not take the wheels out from under the cart at this critical time of his development and journey.