Submission 2416
Submission to the Senate Community Affairs Legislation Committee
National Disability Insurance Scheme Amendment
(Securing the NDIS for Future Generations) Bill 2026
Hi, my name is B
I am making this submission as a person living with long-term mental health conditions and neurodevelopmental disorders who has only recently, after nearly three decades, begun to access the diagnosis and supports that have made my life navigable for the first time. I do not represent any organisation. I represent the experience of someone who has fought silently against conditions that put me at extreme risk of self-harm and suicide, who has rebuilt capacity only to have it taken away again by mental and physical conditions, and who is now finally engaging with services that work.
I am sensitive to barriers. I do not seek to squeeze in above others or clear a threshold I may not meet. I will only seek support knowing it is abundant and understanding. The programs I currently engage with, and those who had offered my only chance at further diagnosis, are at risk under this Bill.
My experience has taught me that open, understanding, and abundant supports are what allow people with mental health and behavioural conditions to end up with the support they need, even if it takes time to get there. Strict criteria based on limited assessment with steep thresholds would have prevented me from ever discovering, through preliminary diagnosis testing after months with different specialists and a recurring counsellor, that I test extremely high for OCD and that I waste enormous amounts of time and mental energy performing compulsions I had come to normalise. Steep thresholds would have prevented me from learning that my diagnosis of anxiety and depression, first received at twelve years old growing up in violent and sexually abusive family relationships, may have had its treatments repeatedly undermined by other conditions long undiagnosed. Every time I tried to seek treatment over decades with the few answers I was afforded by this system, I felt extreme frustration, blindsided by hidden complications, never seeing my efforts or commitment result in lasting wellness.
During initial appointments I have always felt the fear and conditioning of my upbringing push me to behave and present myself well. I feel deeply compelled to soothe even medical professionals, assuage others’ worries, and hide any perceived weaknesses I struggle with. If key medical professionals had not taken me at my word, the one time after months of seeing them I could quickly squeak out a truth about my thoughts and behaviours, and they had not maintained their commitment to understanding and exploring supports, I would not have made it this far.
My physical environmental conditions have also always framed my health conditions. Fears around finances, leaving the house, being cornered by an abuser, and even internal compulsions can be obscured by poverty, homelessness, and social isolation in ways that legitimise, explain them away, or remove the trigger entirely so an issue that occurs when conditions are manageable is hard to identify when I am unwell or unhoused (and vice versa).
I have met with services, specialists, and supports throughout my adult life. Those with the funds and passion to provide specialised education-based delivery have helped offset the debt left by an individualist, isolating culture that stigmatised and overlooked generations of behavioural conditions in my family, and allowed me and my sister to be traumatised without anyone knowing or intervening. I hope our current health system recognises the tireless work of these professionals as ultimately positive, even if it has meant uncovering more needs that require additional funding than if it were all still ignored.
On the flip side, I have met many people driven by metrics, bonuses, and paychecks who, without the education or care, have been gifted decision-making positions as arbiters of my connection to support and welfare regardless of how much I needed either.
Submission 2416
At different points over 15 years, I have engaged with a Disability Employment Service, an Employment Service, and an Inclusive Employment Australia service, and have mostly faced experiences that worsened my health and obstructed my journey to better health and lasting engagement in society.
At the DES provider I was told during my initial interview, “well you have both arms and both legs so it can’t be that bad,” and in the same interview ordered to sign an agreement and told I could not leave until I did. I cried and objected in a panic until a supervisor stepped in to rectify as best they could, telling me I could go. I left feeling re-traumatised. It took around 6 months to feel safe leaving my house, and years to seek support from a similar service.
Years later, having been automatically kicked off DES for not using it, I saw a more generalised Employment Service. Session after session, I was offered positions with almost double the required hours that I had agreed I could work. When I said flatly that I was not comfortable to take any of those on and that I needed to be sent positions closer to the hours I was required to do, another job search coach came over and screamed at me: “You’re part-time ready, that’s fifteen hours weekly, you have to shut up and take one of these positions.” Before I could reply that my agreement was for eight hours, the job coach continued to scream over me about how I was going to lose my welfare payment. Again, this brought me to tears. I walked out and again a supervisor chased after me apologising, saying it was a misunderstanding and if the coach knew I had triggers making me sensitive to that treatment they would not have treated me that way. My conditions, compulsions, and isolation again spiked.
More recently, with an IEA provider, I have thankfully been with a community based counsellor and GP who, after a few months of trying to meet the provider’s ever-changing demands, practically ordered me to use a medical exemption and stop seeing them. My counsellor plainly said she had seen my growth and how many more commitments, job search and volunteer, I had taken on and until then had been moving in the right direction, but my experiences with the IEA provider were triggering panic attacks, self-doubt, and regression in my progress.
At one session with the IEA provider I was told, “everyone has a bit of anxiety and depression, it isn’t an actual barrier.” At another I was told I should quit the volunteer position (which months later would turn into an employment opportunity) because it was time to do a paid position and if I didn’t start now I’d be unprepared and flounder when it came up. I was told I was hampering my job coach’s statistics. I was lied to about things I had said: after one week saying I felt a lot of pressure at my volunteer position because so many others relied on our work there, the next fortnight it was worded as “you said you were bored and you want to quit.” No one was ever accountable, even when it took six sessions to actually meet my job coach, where most other appointments until then just involved a stand-in apologising as I was forgotten in their systems, pretending to type on a keyboard for a few minutes then saying we were done. Once sessions with my job coach started I was immediately told I was behind and had wasted too much time not progressing. Toward the end of this time, I asked to speak with the team leader but when I came in for that session my job coach said they wouldn’t see me and my benefits were going to be cut. Thankfully I had my medical exemption in hand by then.
I believe these are symptoms not of a system that isn’t cruel, narrow, or metric-based enough. I believe these interactions were symptoms of the metric based, box-ticking race we are put into by underqualified people who hold our very food and housing as the threat to make us keep up. In my life I have engaged with employment services because I genuinely wanted to build confidence, yet it is only when I have been on a medical exemption, away from the disarray and stress of these services, that I have found rewarding and fitting employment. I so wish that instead of panic, expectations, and inhuman, unhelpful printed lists of other services I’m directed to navigate myself if I need them, they had the time and training to help me find the right work and remain employed while connecting to broader supports and being part of my health journey rather than a detriment to it.
Submission 2416
After seven months volunteering in the same two positions, the boss of one of them asked me to let him apply for a grant to begin paying me. He said he had come to understand that my anxieties around employment didn’t reflect my performance and that he would tailor the position however he could to help ease me into it. Despite my past traumas around employers this felt incredibly worth it, and I have now been paid for the work I do with them for almost three months. There was a fortnight where I increased my workload capacity too quickly and felt burnt out. Perhaps a previous IEA provider would have described it as me floundering. But my supports, from counselling to my GP to my now boss, were understanding and patient, and after a heavily reducing capacity for two weeks and some goal resetting, I am now back to around the same capacity that once burnt me out and managing it much better. The hours I work now, even on busy fortnights, are still below the minimum benchmark set by IEA and employment agencies that need to be met for coaches to get their bonuses and for me to get the welfare I use to survive. I would still be told I’m behind. But I am finally almost there, and have continued to trend in the right direction.
Even when I am not working for pay, I volunteer elsewhere and do neighbourhood clean-ups weekly to reduce trash flow into waterways and beautify the block. Businesses around me know me now. The local community hub all beep and wave as they come and go from their many different events, and other neighbours appear to be pitching in too. I have also made contacts with marginalised groups like the elderly, low income, and diverse communities, providing outreach when needed. These things come easily for me, whether it’s their flexible nature or the different feeling of being wanted and paid in respect versus being cornered and expected. But these things are not recorded on the profit and loss statement of the government viewing disability welfare recipients. The flow-on effects of helping us connect to our community go so far beyond what is currently recorded, and so I believe the flow-on effects of straining those connections will too.
This system can be exploited but exploitation can also be implied where it is not, where patience, misdiagnosis, and the fog of non-linear progress exist.
Sweeping measures will hurt those who need it and who wish to contribute, recover, or even just exist. I have waited approximately five months for services whose first appointment will be at the end of this year (11 month waitlist). Without continued contact with my supports until then I may no longer be in a position to access these services when the time finally comes, or those services may have had to cut back or close entirely.
The proposed changes appear to do the opposite of targeting individuals and organisations that are exploiting the system, instead tightening definitions and removing funding across the board. The justification for these changes suggests more funding to prevention of exploitation and more understanding of who is or isn’t benefitting constructively from the scheme, not broad cuts that leave the most vulnerable and invisible to absorb the cost.
I urge the Committee to consider that reform which harms current participants to protect future ones is not protection. It is risk transfer.
This Bill affects people who are the least able to pivot, mentally and physically, from what it takes away.
Thank you for considering my experience and submission, B