Hi,
I would like to submit the following concerns about the above Bill.
Background
I am the mother of a 27 year old who is on the NDIS and has been living in SDA with 1:1, 24/7 support for nearly four years. I am in my early sixties, have ASD myself, (not supported) and have retired due to the burnout experienced caring for my son while trying to manage a household, support another son with ASD, and participate in the workforce.
My son ‘R’ has multiple disabilities for which he has gained access to the NDIS. These are ASD, Intellectual Disability, Vision Impairment (He is fully blind in his right eye and has limited vision from his left), Deafness, and other sensory/speech. As well as this, he has spinal abnormalities and club feet, neither of which is supported by NDIS. I have concerns that any AI assessment tool will not be able to recognise and appropriately fund him with these complexities. His needs are much more than the sum of each of his disabilities.
R is non-verbal, can’t read or write, and uses Auslan and key word sign to communicate. We currently self-manage his funding, and employ a small team of three to support him. As you can imagine, R’s needs are quite complex, and he frequently exhibits Behaviours of Concern when anxious, distressed or sore, mainly biting those around him, or biting or hitting himself until he bleeds or bruises. I suffered many bites while he lived at home, one requiring a tetanus injection and another of us being escorted from the local hospital to our car by Security, to ensure my safety. It has taken a long time for us to find a good team to work with R. And my husband and I have no social circle – it is difficult to deepen friendships by inviting someone around for a barbecue when you, and they, know they are at risk of being bitten.
I understand the need to rein in spending under the NDIS, and I support the NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026, however with some changes. My biggest concern is the power being invested in the Minister to make changes without the oversight of Parliament, and without the participant having any recourse to appeal. I will outline my other concerns below.
The Minister will be permitted to make rules and determinations to set maximum funding, maximum intensity and maximum worker-participant ratio for particular supports or for different groups of participants. And there will be no way to appeal these decisions s34A.
With R’s deafness, he is unable to hear someone approaching him or calling his name; he needs always to be approached carefully from in front from his left side, otherwise his anxiety and hence his behaviours of concern skyrocket. This concerns me as there is no way that R would be able to access the community with less that 1:1 support, so were worker-participant ratios to change for social and community participation, he would be stuck in his home 24/7 unless I was available to take him out. And were the minister to decide that SDA will have a minimum ratio of 1:2 or more, I have high concerns for the safety of R and those around him. Are any housemates with disabilities likely to have the capacity to do this each and every time? I am extremely doubtful.
The outcomes of his behaviours of concern include him biting staff, fellow occupants and himself, and is likely to result in the risk of the use of restrictive practices such as chemical restraints (to keep him calm), physical restraint (to move him away from others) and seclusion (to keep him away from others), all of which will impact significantly on his quality of life. In his current situation, the supporters ask him to please go to his room to calm down, and are able to lock themselves in their room if he refuses or they are concerned about being their safety – not an option in a shared support situation.
The Minister may not permit self-management as an option in future.
This is tied in with the issue above. Self-managing R’s funding has enabled us to have consistent staff, introduce them to R slowly to manage his anxiety about change, train them in Auslan and the Positive Behaviour Support strategies that have proven to work well with him, and train them to meet his sensory needs. Our three casual employees work consistent 24-hour shifts, in blocks of up to three days to suit their lifestyle and commitments, and also suit R. His supports are more stable (One employee has worked with him for nearly four years and another nearly two years), and R has only to manage the anxiety of four shift changes per week, rather than potentially 28 (As you would be aware, people with ASD struggle to deal with change). We pay above award wages, and still manage to save the NDIS 15% per year over the cost of a provider.
If R has to share overnight supports, I can’t see how we can self-manage this proportion of his funds, and I believe we would lose the team we have spent years establishing. I have not been able to find a provider willing to take R on due to his need for Auslan, his behaviours, and his complexities, which would make sharing supports problematic. If there was one, it would be a niche provider, and unlikely to be on a list of pre-approved providers the NDIS could source, which creates huge problems for R. He would lose the consistency and stability of his supports, and there would be a real risk of a provider sending supporters unable to communicate with R, increasing his behaviours of
concern, and hence the risk of Restrictive Practices such as chemical or physical restraints and seclusion.
The increasing use of AI to make decisions, manage claims, and the risk of honest mistakes being treated as attempted fraud, all with no avenue to appeal.
Without human intervention, there is an increased risk of honest mistakes being treated as attempted fraud or reported incorrectly. In one claim I made last year, I accidentally typed an amount for an invoice of approximately $7003.34 (our wages bill for that week) and the decimal point didn‘t register, so the amount requested was $700,334, 100 times what I was requesting be reimbursed. It was over R’s budget for the year, and the claim was rejected on the grounds that the amount requested didn’t match up to the amount on the invoice, however I found out last week that the payment system would have treated this as an attempt to make a fraudulent claim, which is obviously ridiculous! And this honest mistake would have been included in your statistics about people trying to ‘rip off the system’.
I have concerns that, under s59A of the new Bill, my honest mistake would, if it occurred in future, be treated as ‘providing false or misleading information’ and I would suffer a civil penalty for it with no way to appeal. Can you assure me that there will be enough human oversight that cases such as this will not be considered as ‘fraud’?
And I have concerns that the automated decisions and algorithms do not have the ability to make decisions about appropriate supports for NDIS participants with complex disabilities such as R.
Conclusion
Thank you for reading this letter. I am hoping that I have given you a couple of insights into the difficulties of someone with complex disabilities, and the concerns facing those attempting to support them. I am asking you to please consider my concerns above, and reconsider the NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026 until it addresses the issues I have outlined:
· Remove the Ministerial power to cut funding or make huge changes without the oversight of Parliament or the right of appeal
· Make sure that self-management remains an option for participants and families
· Ensure human oversight of any automated decisions and algorithms by people who are knowledgeable about disability and its impacts.
Life is difficult enough for myself and R without the proposed changes.