Submission on the National Disability Insurance Scheme Amendment Bill
2026 (Securing the NDIS for Future Generations)
Dear Committee,
I am a late diagnosed autistic and ADHD woman and my autistic daughters are NDIS participants, aged 6 and 9.
I do not support the NDIS Amendment Bill and ask that the Government withdraw the Bill.
I am deeply concerned that this Bill fails to recognise the inherently complex nature of neurodevelopmental disability, that standardised functional assessments will be insufficient to capture our day to day reality, and that the consequences of this Bill will exacerbate the inequalities and isolation already faced by families with disabled members.
In my lived experience, autism is a dynamic disability that often features fluctuating capacity, but by no means is it insignificant or impermanent. I spent the first three decades of my life under-diagnosed and under-supported. In addition to the personal cost of inadequate support, there is the tangible cost of regular mental health care plans, not earning enough to pay tax, lack of superannuation, and, given the link between chronic stress and autoimmune disease, ongoing treatment and care for the two autoimmune disorders I have developed.
My children need additional support. They have dynamic support needs, which will not disappear in adulthood, but I hope I can support them to live fuller lives than I have. I am worried that new functional assessments will not capture the nuance or reality of our situation.
My daughters are physically capable and verbally articulate (when their nervous systems are not overwhelmed). However, it is not easy for us to go anywhere. We have to think about how overwhelming an environment will be, how many people will there be, how loud will it be, how easy will it be to leave, will my child be safe if they elope or have a meltdown, how much capacity do we have to access this space / experience today, and how much recovery time will we need afterwards before attempting another activity?
Our energy levels are fluctuating. My children might be able to do a particular activity on one day but not the next, or in the morning but not in the afternoon, or in the afternoon but only after three hours of alone time with special interests. We have to plan our lives carefully and be constantly flexible. We might have to choose between a family lunch and a soccer game, or between a play date and a trip to the zoo. We are always making these choices. We might only be able to stay at the zoo or museum for an hour - because that’s our capacity - and after, need two or three days of very low or limited activity to recover.
My daughters are verbal. However, when they are overwhelmed they can become minimally verbal. They feel distressed because they can’t access the words they need in a moment when the cognitive and sensory load is too great. They may only be able to say one thing over and over, or make distressed sounds. If they can speak, they may express confronting feelings and
thoughts, such as non-existence fantasies, or the temporary desire to harm people they love and care for, or themselves.
My 9 year old has tactile sensitivities which make it difficult for her to wear clothes or shoes. Even in the winter months, she will only wear minimal clothes - and rarely anything warm enough. She has recently started to put her sensory compression tank on independently but usually needs assistance taking it off. Similarly, I don’t need to physically feed her, but she does require emotional support, a calm environment, and constant readiness to prepare safe food. I often need to prepare multiple options before she will find something she can tolerate, and I prepare food carefully according to her preferences. When she attended school, she could barely eat at all there due to the sensory load of the environment. This is not about fussiness even when she is hungry and wants to eat she may have difficulty doing so. This is naturally uncomfortable and distressing for her.
These are just a few examples from our lived experience.
Functional assessments must be capable of reflecting the challenges that our children face every single day, and the effort and energy it requires to do something that might seem fairly simple to other families. The NDIS has always required participants to demonstrate the way their disability impairs their functional capacity. I believe that any functional capacity assessments should take into account reports from health practitioners who have expertise in their given area and have observed, known and worked with the individual over an extended period of time.
This Bill is being presented alongside broader changes to the NDIS including the formation of Thriving Kids, and gives preference to support that is informal, community-based and cheaper. There is a lack of clarity and assurance regarding such support. We don’t yet know what options we will have, or if the support will be genuinely neuro-affirming and actually accessible to us. For example, it has been suggested that daycare centres, schools, and other community spaces that children already attend would be “ideal” places for them to access lower level support, but my children don’t attend those spaces because they are inaccessible, overwhelming and require significant recovery time. Will there be alternatives? My children have previously struggled with group therapy because they are often overwhelmed by more than a few people in the room. They benefit deeply from working consistently with one or two people.
I’m not taking my children away from school to attend therapies. Even with accommodations, school is currently inaccessible for my children. Our 1 hour OT appointment is one of few things we can reliably do outside of our own home every week. My children have developed positive relationships with their OTs. I believe they need the regularity of weekly sessions for this. My almost 6 year old still needs me to be present during sessions and they both sometimes need active support transitioning at the end. As their Safe Person, I am not dropping them off and going to get coffee. I am in the room.
I have done hundreds of hours of research, observed my children at every stage, and been actively involved in their care every single day of their lives. Parents in the autistic community have done huge amounts of work to understand the best ways to support our children. I am not opposed to online resources, which, if done well, could help the next generation of families. However, I do believe we deserve more than online resources and websites that tell us less than we already know.
I don’t think that there has been enough genuine consultation with the disabled community around the changes to what will be considered “permanent” disability. Good reform should not risk creating more harm for vulnerable Australians, leaving gaps in the support participants receive, or increasing the likelihood of disadvantage where intersectionality is at play, for example, for disabled BIPOC people. The reassessment process should be more responsive and flexible rather than less. A responsive NDIS would help to ensure that funding is used as effectively as possible, leading to positive outcomes for participants.
The language around “reasonable and necessary” supports should be protected, while references to these supports needing to be “consistent with the financial sustainability of the Scheme” should be removed. A scheme that was intended to centre and support the individual lives of disabled people should not shift the focus to being less expensive, at the cost of participants’ quality of life and autonomy. This Bill represents a significant shift in who has power, and how much of it they have, within the NDIS process. No one person should have sweeping powers to make decisions that will affect the daily lives of vulnerable Australians.
The Eastham decision and the “whole of person” concept should be protected. From my personal experience as an AuDHD woman with anxiety, it can be very difficult to untangle my multiply neurodivergent brain to understand which challenges arise from autism, which from ADHD and which from anxiety. They are all part of the one brain, interacting and affecting the one person, who is experiencing real impairment. My daughters’ ADHD traits frequently interact with their autistic traits. Sometimes it may allow them to appear more social or less rigid, but it also creates additional distress every day as they navigate life with a brain that is complex and doesn’t always respond well to “autistic strategies” or “ADHD strategies” alone.
The well-being of a child is directly influenced by the well-being of their family. This should influence decisions regarding “what is reasonable to expect of family, carers, informal supports and the community”. Families should not need to be at crisis point in order to access support, nor should they be afraid of losing future support. As a mother, I have unlimited love for my children, but unfortunately I don’t have unlimited capacity. At times, I have been pushed well beyond my capacity. It is devastating to be unable to parent in the way that you want to; for me as an autistic mum that might look like reduced verbal capacity, reduced ability to animate my face, being unable to plan or attempt outings, needing to ask my children to give me space when I’m overstimulated, having to do the bare minimum around the house due to fatigue etc. I am fortunate that my husband has flexible work, and can usually step in when I am experiencing an autistic shutdown, or recovering from a meltdown.
When care work - care that is substantially more than what parents of non-disabled children are expected to perform - is placed solely upon parents and informal supports, there is a significant risk of families falling through the cracks and of disabled children missing out on very beneficial support. Furthermore, it reinforces the inequality that is already faced by families with disability. I have had to turn down professional opportunities. Many families have to reduce work hours, resulting in less income. In a culture that rewards wealth building and individual success, it feels like we will be left behind. This is also gender inequality when the majority of unpaid care work is performed by women. We can and should be making care work more visible and more valued; these changes will do the opposite.
This Bill fails to recognise the isolation of the nuclear family and the compounded isolation of the disabled nuclear family in Australian society. It fails to see how much we are already doing with how little support. This Bill fails to recognise that when people are undersupported, the cost turns up somewhere else.
In conclusion, I support NDIS reform where there is genuine and thorough consultation with the Australian disabled community, and a commitment to leave no one behind, regardless of the relative visibility or invisibility of a person’s support needs. Disabled Australians and their families deserve the opportunity to live good, full lives. In light of my own experiences and the concerns I have mentioned, I do not support the NDIS Amendment Bill. I ask the committee to consider my lived experience, a small part of which I have shared in this submission, when they are reviewing the Bill.