June 1st, 2026
To the Community Affairs Legislative Committee,
I have been an NDIS participant since November 2024. My current situation related to the NDIS demonstrates what could well become the norm if the majority of the proposed changes to the NDIS are enacted, and I will not mince my words. It is nothing short of horrific. Whilst I would have loved the opportunity to put forward a concise, well structured document; unfortunately due to the lack of consideration to the reality for people with a disability and the constraints that we are up against, we were not allowed adequate time to complete the task. Emotionally, I am not alone in feeling as though the government only sees us as liabilities and that this time constraint could be a tactic to silence us. We will not be silent. We have to fight for every single aspect of our lives down to our most basic needs. We will not stop fighting for our right to live with dignity, and to thrive rather than merely surviving.
The NDIS plan I am currently funded under was an initial plan designed to give me the minimum possible supports whilst I collected evidence requested by the NDIS to prove that I needed more than what was initially allocated. It has now been 18 months, and my plan is yet to be reassessed. From my side, this is due to the initial underfunding of support worker assistance resulting in my not having the capacity to complete these tasks as well as basic survival. In addition, I have had to fight against unscrupulous providers promising they could deliver services that they did not, despite being paid for them. The unscrupulous providers see dollar signs on our foreheads and nothing else. This is what needs to be addressed. So many of the other proposed changes are not only unnecessary, but have the potential to be incredibly damaging.
As of last week, I have no more funding in my core budget for support workers. My support coordinator has attempted to escalate the review, and this has been rejected
four times. We were told that as long as there was money in my core budget, my review would not be allocated to a planner. Even when the amount got to the point that I only had a weeks worth of funding left. How is this ok? Essentially the initial tone was “we don’t believe you need these supports, prove us wrong”, and now the tone is “unless you are at deaths door, we don’t give a damn.” I feel completely worthless and am terrified for how I will survive until the NDIS actually looks at all of the documents that they requested and paid for, and to reassess my plan. I fear that my next plan will be inadequate again and I will be left to suffer alone behind closed doors. None of this behaviour makes any sense to me, and it is certainly not efficient in any way. I am at risk of hospitalisation if my plan is not reassessed. This is not cost effective for the government and is extremely detrimental to me. It simply does not make sense, yet this is the reality.
One component of the proposed changes is that we should be accessing alternative government and community supports, however, there aren’t any. Unless you have the NDIS, there are no supports accessible unless you have private wealth. Before applying for the NDIS I looked everywhere for help. The disability employment service and Centrelink social worker had no suggestions. No disability service would help me unless I was already funded. I have no informal supports. If this change comes into effect without consideration that there are no other supports available for us, the impact will be severe and people like me will die. We don’t want to die. We want to thrive as equal members of the community.
A society is judged by whether disabled people are allowed to participate in life, not merely survive behind closed doors. I am not only house bound, but couch bound due to the impacts of my disability. My private rental home does not allow for wheelchair use. Whether I am able to live in an accessible property is not a decision that is up to me, and that is a horrible reality to live in. Before I developed my disability, I was able to choose where and how I lived, worked, socialised and participated in my community. I no longer have the power to make these decisions, and it is slowly killing me. The detrimental impact on my mental health is so severe that, like many, I have considered death as the only option. This is horrendous for all of us that experience this emotional spiral. These changes will lead to more of us experiencing this. Please do not do this to us. We are amazing. We are valuable. We deserve to live with dignity like those without a disability.
The budget allocation for the NDIS should not be based on cost saving, but on need. And I mean our needs as whole and complete individuals that are valued. Not merely as a medical definition. These do not define us. So many life altering disabilities are dynamic and fluctuate. We may be able to do something one moment, but not the next. These disabilities are also often under researched, and thus the proposed changes to what is meant by “reasonable and necessary” will impact negatively on those with under researched disabilities. I fall into this category of under researched disability. I fear for what this means for my quality of life in the future.
I wish so much that we were afforded a reasonable amount of time to provide input to these proposed changes. I wish I could have written a more thorough submission. That I had the opportunity to provide meaningful input as an NDIS participant. However, once again, our needs were not considered here and the Labor government that I voted for to save the NDIS should be ashamed of themselves. These aren’t your values. This isn’t what you stand for. Go back to your core values. Go back to the original core pillars of the NDIS. You are not the party that prioritises the big dollar end of town. You look after us. The people, including the most vulnerable.
I would welcome the opportunity to provide further input if asked.