National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submission 3727

I am a 31 year old single woman living with ASD2 and hEDS. I have struggled with the symptoms and complications of these conditions since childhood. Due to my mother also having both of these conditions, I was not officially diagnosed until adulthood due to my mother thinking it was just normal, since she had grown up with the same issues, as did her mother. From the age of 19-27 I was in a domestically violent, controlling and emotionally abusive relationship. My reason for staying in the relationship so long was because it was the only support I was receiving for my disabilities. My only sibling lives overseas, my mother is legally blind and my father is her sole carer. If I left the abuse I would have zero supports available to me.

In 2022 at age 27 I finally made the decision to leave, thanks to the reassurance and support from my doctors that I would be able to get the supports I needed from the NDIS. Since then, it has been a non-stop battle to gain access for over 4 years now. Every time I provide what the NDIA are requesting of me, they give me something new that they need, constantly moving the goalposts and gaslighting me when I have written evidence to the contrary. This whole ordeal has had devastating impacts on my life. It has cost me relationships with friends, family and partners. It has cost me my full-time job that I had successfully held for 7 years, and many jobs that I have tried to maintain since. It has cost me the relationships and rapport I had built with my treating team. When in reality if the NDIA had offered me any form of support when I first applied, I would have been able to maintain my employment and actually keep contributing to society. Instead, I have been forced to stop working as I can’t even meet my basic hygiene, food and home maintenance needs let alone have a job at the same time.

My access request is currently before the ART and luckily I am represented by an advocate. After hearing the proposed changes, I had to have a very serious conversation with my advocate about whether we even bother continuing to fight for access. It has been over 4 years now and I am terrified I will finally gain access, only to be kicked straight off along with the other 160,000 proposed people. To be blunt, if that were to happen, I would commit suicide. The process over the past 4 years has been dehumanizing, isolating, and overall detrimental to my physical and mental health. I have utilised every other support program available to me but there are none. I was once told by the NDIA to contact my LAC to be referred to a more appropriate program than the NDIS. I did exactly what they told me, only to be told that the appropriate program IS the NDIS. I am so sick of constantly being handballed from agency to agency, jumping through every hoop I’m asked to. I don’t have any fight left in me.