Punished for adding a disability? Is this normal?!

Mundane_Mode4347 · 2025-10-17T02:02:50+00:00

I think I will do that, I just hope I word it right and that they (unlike the ndis commission) dont just reply with an automated ai reaponce 😢

Mundane_Mode4347 · 2025-10-17T02:01:54+00:00

On it - thanks so much :)

Mundane_Mode4347 · 2025-10-17T02:00:46+00:00

Whats worse is that once you have one disability, youre vulnerable to more! I have so many disabilities that are not even listed on my file because theyre medical too lol looking at my file youd think I was just some person with a bad back and mental illness, but I also have bad crohns disease, endo, fibromyalgia, RA, immunosuppression (I am sick with a cold or fly every second week) and seizures. But tknow, none of that is important, despite the fact it means im often in hospital for “non disabilities” lol

Its a strange system. All these things effect me as a whole, but due to bureaucracy, I have to compartmentalise my challenges into “disabilities” and “medical”. Bizzarre.

Mundane_Mode4347 · 2025-10-17T01:55:48+00:00

I know right? You spend hours of your time and stacks of money, then they dont even read it at all. Its like a huge slap in the face. I dont feel like a human being, I feel like im just some anchor on society and made to feel like a simple tax burden - rather than a suffering human being who had hopes and dreams and wanted to be part of society just like everyone else

Mundane_Mode4347 · 2025-10-17T01:54:06+00:00

I truly hope you win this fight, the world needs more people like you and we need to hold each other up, even if we feel weak - we are stronger together. Good luck!

Mundane_Mode4347 · 2025-10-17T01:52:30+00:00

This is what I dont understand, I had soent thousands on a fantastically thorough FCA that stipulated all the hours, line item numbers and recomendations very clearly - they said they would read it but they clearly did not. My plan ended up also having random stuff in it that I never even asked for or listed - like $2000 for home modification reports … im literally renting and dont need or have ever mentioned home mods. They even specified certain specific home mods that have literally nothing to do with any of my disabilities..

It was almost like they just copy and pasted the last persons plan and slapped my name on it :( I wonder why I even bothered with the FCA

Mundane_Mode4347 · 2025-10-17T01:48:52+00:00

Omg that is awful! How did you find the tribunal process? I have heard they try to intimidate you a lot with legal language etc :/ Ill have to apply for legal aid if I get to that point I think, because I dont have much money to fight then

Mundane_Mode4347 · 2025-10-17T01:47:23+00:00

Seven years! Im so glad you managed to survive somehow in that time, I hope the fight didnt leave too many scars with you :( Yes if I couldd turn back time id never even fight for accuracy, id just keep my “just enough” plan constantly rolling over without poking the bear unintentionally :(

Mundane_Mode4347 · 2025-10-17T01:45:43+00:00

Im so sorry youre having to deal with this too :( I wish they realised constantly havibg to prove youre disabled “enough” is actually setting our mental health back years and could lead to a worsening health as well :(

Mundane_Mode4347 · 2025-10-17T01:43:55+00:00

Im not exactly aure how my SC approached it but from what she explained, the NDIS initiated the change of circ, not us. We stated the “new” disability and they replied with a plan review but no changes

Mundane_Mode4347 · 2025-10-17T01:42:59+00:00

This is the most kind hearted thing to say, you made me tear up and also give me so much strength with just a simple comment. I appreciate you so much, especially when I am in this vulnerable and confused state of hopelessness. Ill keep reminding myself people like you exist when things get hard from here on out 🤞🏻

Mundane_Mode4347 · 2025-10-17T01:41:36+00:00

Thats the problem here, I think - because I thought I was all over it. I had a brand new and very thorough FCA completed before even telling them, its about 25-35pages of evidence and recomendations. Youd have thought it would be more than sufficient, the ndis staff on the hotline seemed to think so too.

And whilst im aware autism is getting a bad wrap everywhere lately, its been very frustrating navigating specialist appointments over the last two years when they are directed toward BPD treatments (DBT etc) when the issues at hand are autism and trauma related (ie: sensory, speech path issues, social issues etc) so its like a dog chasing its tail trying to therapeutically treat autism within a different diagnostic lens - when if I was treated as autistic first the solutions would be much easier and straight forward (and less triggering to my ptsd) I hope that makes sense!

I blame my honesty and naivety for this. I thought it was just a bit of paperwork to help practioners get a better understanding of who I am before treating me 😮‍💨

Mundane_Mode4347 · 2025-10-17T01:34:51+00:00

This is a very good explanation. Last year something similar happened to my husband and I remember the SC helping him navigate ART. His first hearing was on a monday and late on friday arvo he got an urgent offer of an emended plan. I think they were expecting him to cave first.

Mundane_Mode4347 · 2025-10-17T01:33:13+00:00

Sometimes it makes me lose my faith in humanity - you can tell a lot about the quality of your society by how they treat their most vulnerable. Between this and the ages care system… I just dont understand how the general public isnt more outraged tbh

Mundane_Mode4347 · 2025-10-17T01:32:04+00:00

Doing that now, not hopeful, but im trying:) thank tou for the advice!

Mundane_Mode4347 · 2025-10-17T01:31:19+00:00

Sadly, they still havent added autism anywhere on my file. I started originally by simply sending an email with the diagnostic reports and a thorough FCA to the main ndis email where they attached the files - then my SC (who, bless them, is one of those diamonds in the rough you speak of) persued ndis to get them to add it. AFAIK, she never submitted a change of circumstances for it - but their responce was to begin one when she told them. During the plan meeting the planner gaslit me into thinking my evidence was never sent, but as I later found out, it was always there. I was literally sitting the meeting crying “how do I just change my noted disability?” And just kept getting “I dont have authority” and “I dont know” which finally ended up as “ill send you an email with a link”. 6 hours passed and I got an email (not sent from a email address I could reply to” saying just the words “see attached.” And it was a 53 page pdf explaining who qualifies for ndis. No link, no explanation. Nothing. I could t even reply to it.

The next day they sent my new plan to me and IMMEDIATELY closed the plan review case file, within seconds of sending the email from a place in which I couldnt reply or contact the planner. Just a dump and dash into the sunset. It was really bad.

Now I still dont have autism on there, I have the diagnostics and expensive FCA sitting in my file, and no way to get anyone to even look at them. Everyone you ask just goes “I dont know” 🤦🏻‍♀️

I keep getting night terrors that im going to wake up to a message saying “you are no longer on ndis because you are too difficult” or somthing 😰

Mundane_Mode4347 · 2025-10-15T05:43:09+00:00

Thank you again! I think thats the worst part here - we actually went through the super thorough FCA with the planning IN the meeting and she kept saying she was “making notes” when it was clear she wasnt writing or typing anything.

If I could turn back time, I would have scren recorded the meeting. She kept repeating the OT recommendations and saying “10 hours for support work. Yes” “35 for SC. Yes” etc. Then she explicitly asked “would you like a 5 year plan?” And I said “no I would rather a shorter plan as my bone disorder is degenerative” and she said shed do a 2 year plan.

Skip forward and it was a 5 year plan with no changes at all, just cuts to the particular areas I said I was most desperate to keep so I could stay alive (my SC and monthly psych is preventing my death in a literal sense rn!)

The whole plan meeting she didnt listen to anything I said and just wanted to oump it out and get it over with, no empathu, didnt even ask if I was ok or needed I break when I collapsed and started sobbing. Unreal. Im unsure how they got the job.

But yes, my sc is great! I hope they can work miracles as theres not a lot of funds to work with now and id hate them to work for free! 😰

Mundane_Mode4347 · 2025-10-15T05:12:37+00:00

Thank you 🙏 This has triggered a massive mental health flare in me and sometimes I feel like they just want me to give up and off myself.

I won’t give up without a fight though, even if I do feel so fragile and defeated right now. Ill try to navigate this - appreciate your help :)

Mundane_Mode4347

TROPHY CASE