National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1616
Submission NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026
Wife, mother, carer
This submission is from the experience of caring for three people on the NDIS. I am the carer (informal support) for my husband who has Spinocerebellar Ataxia 17 (SCA17) a very rare autosomal dominant neurodegenerative disorder with symptoms that include ataxia, dementia, and involuntary movements like chorea or dystonia. I also care for our two children who are Autistic along with numerous other diagnoses and challenges.
I am deeply concerned about the proposed changes to the NDIS bill. As a carer I am already beyond my limits. In the past six years we have moved from a house on the Central Coast with two working parents and two children in child care / school to selling and moving further away, then selling again and downsizing more, neither parent working (husband cannot and I need to care for him whilst I await the right supports), Husband unable to drive nor be independent, One child becoming non- verbal and requiring homeschool, and a household where the father and his children can not be in the same room together. I am expected to care for my children and husband, but I am unable to physically split into three.
Whilst our situation is difficult and not normal, the support we have received has been life changing.
It took four years for my husband to receive a diagnosis, and therefore support. Four years of not working and finding everyday life like getting out of bed and showering difficult. Once we finally got NDIS support, we saw a huge turn around. The therapy and support he receives has slowed his decline. One of the biggest changes was providing him with purpose. Social participation and the ability to leave the house has improved his mood which then improved his cognition. Have purpose has seen him returning to some function like the ability to shower and dress with fewer prompts and supports.
The “crackdown” on social participation funding is alarming. As the carer of a person who has acquired cognitive and physical disability, the most impactful thing that has been providing purpose again. After no longer being able to work, then drive and with apathy making tasks difficult, my husband was unable to function with selfcare tasks. After receiving access to the scheme and having Support Workers he has purpose - a reason to get up, shower, dress and eat. His emotional wellbeing has improved his cognition. My husband will not participate in group activities. He would be too overwhelmed and struggle to understand. He does value his time out with a
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1616
support worker to get something at the shops, see a band or play pool. He wants to feel like his ‘normal’, not what others deem ‘social’. By cutting this, he will decline cognitively and functionally, which will result in more care required, and thus greater costs.
I also hold grave concerns for the proposal to move to a functional assessment where all are judged across the same criteria by NDIA employees is terrifying. As anyone who understands inclusion would know, equality is not equity. People are all different and unique, when you design without this approach it fits no one. This is most evident in the disability world. By taking this approach and denying human intervention and the right to appeal, harm will be created. We have already experienced planners who do not understand challenging impacts like apathy to a person. This is degenerative brain damage that cannot be taught and needs to be supported.
I also worry for my children. They are both Autistic and require support. I am doing all I can to help and prepare them to being functioning adults, but their disability means they require more support than myself. Therapy has been instrumental in helping my children (currently 9 and 12 years old). Like many neurodivergent kids, school has not been easy for my children.
My oldest finds schoolwork easy, but the social anxiety and hierarchical nature resulted in school trauma. This is clear evidence that when the fit is wrong, function declines. Close to five years ago he stopped being verbal outside of direct family. Due to not speaking and not the right supports I had to move to homeschool. Throughout this time, we have been working with therapists and more recently a support worker to gain back some speech and start to develop independence to return to school. In his last plan we had most of his support worker hours cut. We were told parental responsibility, but how do I work with him when the goal is to be away from me? Let’s not forget my husband cannot be in the same room, little own care. Without these slow steps to independence, school and communication, my son will not be functioning in society and will cost more to support. It is vital that the right supports and development happen prior to being locked out of the workforce.
My youngest child lives with Meunke Syndrome that has symptoms including bicoronal craniosynostosis, hearing loss, learning disabilities, as well as Autsim and ADHD. He is attending school but needs support. He is currently behind age level due to his disabilities but it working to catch up. Again, if support was cut now it would cost more in later life as he may fail to thrive.
Running the scheme based on purely financials and slowing growth through the removal of participants is harmful and goes against human rights. How can you predict the levels of disability and needs? Disability sits at 1 in 6 people in Australia, yet there is no where near this number on the scheme. Why are the current need for support so unfathomable? And the response that other schemes and support will exist, how and when? Should the schemes not be the first step before the removal?
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1616
The saying was “build it and they will come” not “send them of and it will be built”. The reality is that the needs will not disappear, they will be absorbed by me and others like me. Women mostly, who will lose their work, their super and any sense of self. This will also see further stress on our hospital systems.
A sure way to impact functional capacity is to not support and drive further stress. I can see that many who will return with lower capacity and need greater support due to these changes.
I also find it difficult to understand why this bill has been so focused on financials rather than care (and implementing changes from the Royal Commission) when it has shown that $1 spent returns $2.25 in economic growth. It seems to short sighted that we are claiming back money which will result in economic downfall, job losses and further functional impairment, which will cost more in hospitals, housing and pensions. Surely by addressing fraud and department waste the scheme could function to benefit people with disability and the greater society.
I am also gravely concerned about the impact of these changes on informal carer and the people they care for. You can love someone with all your heart but often disability can get in the way of this. It is hard work well beyond functional caring. Carers deal with emotional and mental workloads well beyond paid staff. The expectation on me as an informal carer of three has already resulted in losing a high- profile career and currently not working due to not having the supports my husband and children require. I am on 24/7 hypervigilant to prevent harm and even if one person I care for has support I am still caring for two more. The proposes to increase parental responsibility will break my further. Some things need to be taught externally. Sometimes parents need to be parents, not carers, educators, therapists. I have no doubt that these changes will create more carers burnout that will result in harm for both carers and or their loved ones. Recent homicides are not without reasons, yet this bill is sure to increase rather than support.
The system is by no means perfect and there are many areas of improvement that would result in saving money and providing a better experience for participates.
Where change can and should be based on our experience
- Improve the skill of the NDIA in understanding disability. Currently the staff do not understand the needs they are dealing with and often provide plans that are not sufficient. The point was always meant to be that people with disability understand their needs best. If planners listened and plans were based on the individual need, internal costs would plummet. Costs for internal reviews, tribunals, legal etc would all drop considerably. In our experience, our requests have been less than the cost to fight us. In addition, there has been supports not requested in the plan, and unable to be used as not appropriate for the person or family. Listen to the people.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1616
- Improve communications. There is no communication back to participates when Change of Circumstances are sent in. The NDIA are not reaching their deadlines, but no communications to inform this. There are no updates through the process, resulting in frustration, but also more emails to the one email address. This takes time and money from the team. Additionally, letter generations are all over the place. We sometimes receive (via mail) two to three conflicting letters on the same day. The cost to print and mail these letters to both the participant and delegate (at the same house) is ridiculous and confusing. This occurs even after requesting only one set and it to be digital.
- Improve the skill of the NDIA in sending out clear information that is error free. We have had so many mistakes from sloppy work that I’m not surprised that EVERYONE needs to go to internal review. We have had spelling issues, wrong names, mention of devices we did not request, paragraphs that make no sense and so forth. The worst experience was a plan that spoke of being for 50 years right throughout. In less than a minute you could see the issue. Yet obviously no one reviewed the work. We also had someone else’s letter attached to my husband’s file and sent to us. Again, no check that the correct file was attached, and no response to wanting to know if our data was also leaked.
- Timely responses on complaints. The NDIS Quality and Safeguards Commission is a good start, but there should also be an internal complaints avenue, and both need to be acted upon quicker. No participant wants to see fraud in the NDIS. Often, we do not feel listened to with complaints not being addressed or taking years.
- Clarity on plans and reviews. I have one child who has had their plan rolled every time since 2022 even though its only meant to be for one year. My other child had a review without any discussion and had vital funding removed ever though we were seeing great benefits and close to returning to school. My husband has a neurodegenerative disease, yet we are nearly three years fighting for home modifications to support him and maintain some independence (also saving costs for support workers). If it was clear the length of a plan, we would not have to go in for Change or Circumstances. Funny how children and neurodegenerative might have changing needs
- Better understand and support of informal care. The current process seems to discount the amount of impact and work being an informal carer is. This year alone there has been two homicidal cases by informal carers. By considering the family unit and the complexities of multiple disabilities within the family home supports might be better suited. If we had one planner who could understand why we are requesting something and why something else might not work, we might end up with plans that are usable and allow me to return to part time work, before I too require support.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1616
- Ban people and companies from operating. Don’t give chances, our lives are not worth it. If an organisation clearly breaches rules (that should include ethical conduct) then that organisation and any person with responsibility or direct contact should be banned.
I would like you to consider that we are just trying to live our best normal life. That disability has put many challenges for our family emotionally, mentally and financially.
I currently am writing this, not as a job, not being paid, not with time to spare, but in the crazy hours where I should try and get some sleep because I am so concerned. This is not a short-term role that I will move on from. This has now become my life, and it is hard. The proposed changes will make it a lot harder.
Please stop this bill and take the time required to consult constructively with people with disability and their carers. You will find that we are a pretty wily bunch with many ideas and ways to do things differently. We want a working sustainable NDIS more than anyone.