01/06/2026
Topic: Submission on NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026
Enquiry
To Whom it May Concern,
I am writing in my capacity as a sibling and the plan and correspondence nominee for an NDIS participant with high support needs. Upon reading and hearing about the proposed amendments to the NDIS Act 2013, I am concerned about the impact these changes will have on my family member’s NDIS supports and her rights to dignity and autonomy in her daily life.
My sister’s NDIS supports have allowed her to live a life independent of family, as a woman in her 30s. Prior to joining the NDIS she had been cared for solely by her mother since birth. The NDIS has allowed my sister — we will call her S — autonomy, and the ability to choose who supports her in her daily life. This has also allowed her to have family relationships that do not revolve around personal care especially, as any adult would prefer! With her NDIS supports, S has the ability to live a fully inclusive life. It enables her to safely access the community with her chosen Support Workers, which includes attending doctors appointments, Allied Health therapies, completing everyday activities such as food shopping, as well as attending family outings and events that meet her recreational interests.
When supports are reduced due to funding cuts (which S has already been affected by), S becomes distressed, her behaviours of concern increase, and she becomes resistant to personal supports provided to her when they are not by the people she has chosen, is familiar with/has had in place for more than seven years. S is not able to communicate verbally, and she shows her opinions and wants by use of behaviours. Said behaviours can span from physical and verbal aggression, to self-harming in the form of refusing hygiene, eating and drinking. This is especially alarming when it then impacts her health, and inevitably causes more behaviours of concern.
Plan reviews and reassessments are frustrating and stressful on a number of levels. On S’s end, while she is not aware of the technical aspects of the NDIS, she is sensitive to the emotions of the effect on myself as her family and informal support. When said cuts from previous Plan Reviews have gone through on S’s plans, she has been impacted by a reduction of supports, reliance on myself as a support when she does not want me to assist, as well as reduced Civic and Recreation funding limiting her access to the community, to being barely able to cover doctors appointments. This is isolating and demoralising to have her access to social engagements so restricted. She has been reduced from 1:1 care, to an unjustified 1:3 ratio without consultation or
discussion, with adequate evidence and reports provided. She can not live with others, and does not want to live with others. This should be her choice.
Behind the scenes, myself as informal support, Nominee and Guardian for S, I am bound by my love for my sibling and the wish to make sure she has what she needs for a happy and fulfilling life. Plan reviews are stressful and traumatising, because you spend hours and hours getting the requested reports and letters from the specialists that the NDIS ask for, for ‘evidence’ of what has already been a) proven with Scheme access requirements and b) supplied each time a plan comes around from the treating OT, Physio, Behaviour Support Specialists, and other relevant specialists, only to have the proof of the requirements for care for your person rejected due to ‘not enough’ evidence, or the supports that have been requested and endorsed by multiple providers ad nauseam as ‘not value for money’.
I do not have a life of my own due to my commitment to my sister, and the time and immense amounts of energy required to address what feels like an endless stream of reviews and appeals purely to try and get my participant funded as recommended for her level of severe and permanent disability. This is also not to mention the repeated episodes of chasing up information that feels like it is being purposefully mismanaged by the NDIA since S’s (previously properly funded) Plan was first cut in 2022. This is also further compounded by a lack of trust in the system. We are told that we can appeal a decision if we feel it is not correct, but the process now feels like any request for repeal is arbitrarily rejected. You get your hopes up, that what you have provided (again, ad nauseam) was enough this time, only for your hard work and the wear to amount to nothing when the Plan is once again not enough, despite evidence provided being to the contrary.
I watched our mother burn out after caring for S for thirty years. With the help of the NDIS prior to the cuts, before her death from ill health caused by stress, she was able to see S fully funded and thriving with her chosen supports. Since then, it has been a constant fight of advocacy and bureaucratic arguments that has depleted any trust I myself have in the system. I as S’s family feel like I am letting her down because I can not get the people involved in ‘managing’ an ailing and broken system to not treat my person as a burden, an inconvenience or that she ‘costs too much’ and is not ‘value for money’.
I am faced with the looming fear that I will be forced to take over permanent care for my sibling if her funding needs continue not to be met, and with no level of reassurance that what she does get will not then be cut further. That I will be going against her choice and wishes for me not to care for her. That in thirty years’ time I will also die from preventable stress-related illness because a system that was supposed to help has done nothing but hurt and traumatise and psychologically injure those who rely on it. Additionally, being guardian for S presents its own stresses and challenges, being that I need to balance my responsibilities to her safety and wellbeing with my anger and personal distress at what she is entitled to but is not getting.
As far as I am concerned, the National Disability Insurance Agency has been in repeated and knowing breach of the Convention of Rights of Persons with Disabilities, of which Australia is a signatory. That the rights of my sibling have been put below the Agency’s bottom line. The unpredictability of the proposed cuts, and the unknown of the scope of the plan for them is traumatising and disrespectful in the extreme, and shows a clear lack of responsibility to the Australians that live with disability and their families.
With these proposed amendments, if they are to go through, the Agency and the Australian Government are going to be complicit in not only harming Persons with Disability and their families, but will (and have already been) responsible for people dying. This is unacceptable
I ask Parliament to reconsider the passing of this Bill, and add my voice in calling for full and involved co-design and discussion with the Disability Community on handling the sustainability of the NDIS. I fully understand and endorse the need for the Scheme to remain financially viable in both the short and long term, but it can not and should not be done without those it will affect the
most.
“Nothing About Us, Without Us.”
Yours respectfully,