12/11/2025
The NDIS.... a grateful opportunity for support and also a gigantic source of anxiety and frustration for many. Where understanding of what it is like to live with permanent disability seems to fall on uneducated ears.....
I have found myself listening to a podcast this past week on DCEO with Brene Brown. She has made such a difference to my life and my learning to be ok with vulnerability over the years and becoming more grateful for anything i have in my life. So Im feeling like it is a good time for me to get vulnerable for a moment.
Full disclosure... have I ever been a NDIS participant? No I have not but I work with people who are. I also have parents with disabilities who could have been but never ventured down that path because of the level of PTSD of dealing with the system for decades. I am now venturing into the aged care system with one of them. That is no joy either.
While I have not been with the national disability insurance scheme as a participant, because it wasn't a thing for psychosocial disability until 2019. I have been a participant in an insurance scheme that was within my employment contract being salary continuance insurance. Very different in some senses but identical in others.
When I became unwell and unable to work or do much of anything really I became an employee who had to access salary continuance insurance. It was 75% of my income which was not a lot as I had only been working part time because my life was already unravelling. However I was grateful. I also felt awful. A friend at the time said to me.... you have given so much of yourself to your work (when i was full time) and now it is time for it to give back to you. That in itself gave me permission to do whatever needed to be done. And by that I mean allow the breakdown to happen. I had no idea how much it would take from me or how hard it was going to be to rebuild myself from nothing. Now I realise that we are all a walking work in progress and that is OK.
I had regular GP and Psychologist visits and I did that for 2 years before they decided they would send me off to see a Psychiatrist. That was terrifying but I basically gave myself to the process by then and was super honest and did everything she said I should do. Think here all kinds of medications, a couple diagnosis, all kinds of different therapies all while seeing my GP and my Psychologist still. Being unwell had become a full time job. It was HARD! And excruciating most of the time. Who I was or known myself to be had completely changed. I do think now I am a better Kristy than the one who went in for so many reasons.
I do not know what it is like to apply for NDIS funding or have a NDIS plan. I do know what it is like to be funded by an insurance scheme. I don't know what it is like to have an OT come and do a functional capacity assessment on me. I do know what it is like to be sent to insurance scheme paid Psychiatrists to assess my sanity, to take a magnifying glass over my entire life and determine if I am sick or defrauding a system. I remember this insurance company would send me to a different one of these Psychiatrists every 12 months or so maybe even less. One appointment I went to and the Psychiatrist had a huge stack of paper which was basically every single thing I had ever said or done both with Doctors but also anything I had ever posted on social media. Violated much. Then I'd have to go to another one down the track.
These appointments made me feel so much worse about myself. They would set me back months in my recovery journey. They were awfully painful and super stressful.
The insurance company would call me every now and then to check in. Which was also scary. It made me feel like I had to justify myself over and over again. I am thinking if you're reading this you may start to see some similarities to the NDIS. So while I am not an NDIS participant I do my best to try and relate.
I remember the last person they paid for me to see.... and I'll note here that not once did they pay for me to actually access help. That was entirely my responsibility to pay for all the Doctors visits, Psychologist and Psychiatrist visits and also pay for all the different therapy groups or one on one's I had to attend. They only paid for what I felt was to prove I wasn't really unwell. Anywho.... the last one they sent me to was someone who made me do all of these tests to check my intelligence, my memory and whatever else. I had been so stressed just trying to find the place that I was not in a good place to start. They had paid this Psychiatrist person to fly into Adelaide to assess me. Just me. By this time I firmly held a mood disorder diagnosis. It was an awful experience. I eventually heard from the insurance provider and had a complete breakdown. I told them that they were making me worse not better by sending me to all of these people. These people treated me like I was nothing, like I was faking my illness, like in all reality I was just another number in their day to day. They did not care about me as a human let alone my wellbeing or my trauma. It was an experience I would not wish on my worst enemy if I had one. It was the last time they ever sent me to one of these Doctors and to give my case worker some credit she was a bit taken back upon hearing what my experience was like through all the tears.
It has come up for me recently personally and professionally, seeing how many people who need support and need the NDIS (and aged care) and how the NDIA is making people jump through hoops to justify their disability whether it be physical or psychosocial. I've seen providers do the wrong thing and many be amazing. Mostly I've seen so many people talk about how they feel about what the NDIA is making them do and how they make them feel that it brings up a lot of feelings for me. It is truly awful. It makes me wonder if the NDIA actually realise that by making people jump through their hoops every year or less that they are actually setting people's recovery back which in turn increases the financial cost to the overall scheme???
It is like we as a society have taken decades to see disability differently by seeing the person for who they are and not for their disability, yet the people with the most power to help are still getting it so wrong (in many cases but i do recognise not all). It is absolutely mind boggling to me and that is putting it nicely.
My lived experience in mental health and trauma and this insurance area and my personal experience with stigma around mental illness has made me who I am today. It is seeing what my parents have had to go through. It is what made me sit up, stand up and say back in 2015 when I started my bushfire mental and emotional wellbeing recovery work and then again in 2017 when I said I just cant do this anymore I need to do something to make a difference so others dont go through this alone like I am and in 2019 when I started my Peer Work study and 2021 when I finished my studies. I am going to work in mental health and disability. I am going to be that person that sees people for who they are and not for their diagnosis, their disability or their trauma. It made me study peer work over psychology or counselling. I wanted to walk with people in their experience of life and to support their recovery journey knowing I see them for who they are. My lived experience makes me who I am but it is not all I can be and if anyone has shown me that it is all the people Ive met on my recovery journey, my parents and the people I have worked for. Its the people who can say me too and it is OK to be yourself.
Juggling living with a disability is hard enough without juggling an insurance scheme as well. So anyone who sees this please know if I see you or you see me i see you for all that you are and can be. You're amazing just as you are and thank you for what you bring to the world. You're world view and unique lived experience makes life a better place to be. And for that I am grateful 💙
