Thankyou for extending this opportunity . I am writing specifically against the proposed changes to the NDIS definition of permenence and treatment and requesting a separate inquiry into how NDIS permenence and treatment is defined and determined.
If the current definition of permenence and treatment is tightened it will be far worse than what it currently is, and far worse than what I’ve experienced in my life already . It will be made even less appropriate for women and women with disabilties .
Below is a my experience of the current definition so far:
A Fortnight ago my male treating neurologist withdrew my long term migraine treatment .
I’ve been experiencing disabling migraines ever since I could remember .
I have been on Botox injections with the neuro for 10 years and it is the only treatment that doesn’t cure my migraines but reduces the agony of my migraines in the and its side effects I can tolerate.
When I first started Botox my GP was really against it because of concerns it would leak and was really angry at me for agreeing to go ahead . He knew I had no choice and was very desperate or be dumped by my neurologist . It fractured our doctor patient relationship . I couldn’t win either way . Fracture my relationship with my GP or my specialist or fail Access to DSP and NDIS .
For a total of 20 years DSP and NDIS disagreed with my GPs professional opinion and it caused a growing rift between my GP and I to the point he started to refuse to help me reapply and didn’t want to get involved with anything involving DSP and NDSP. The only way I could get access to DSP.aftet 17 years and NDIS after 10 years was ti appeal externally no one would support me to meet the definition of permenence or treatment and I was too disabled Sue to medical negligence .
What happens like me we can’t find a neurologist or specialists in the city because all their books are enclosed or they don’t want to see anyone with chronic migraines or other invisible disabilties such as ME, POTs, or EDS?
What happens when there is conflicting opinions and egos between our doctors and between our doctors and government assessors ? Will we be blocked from accessing DSP & NDIS like I was because we can’t get the care and the treatment we need to meet the new higher definition of permenence and treatment or will we be dropped from DSP and NDIS all together ?
Are disabled people like me always going to be blocked from DSP & NDIS because their own “expert” disagrees with our own GP or disabled people are far⁹22²¹¹¹ too complicated so no one will be willing to help us meet the definition of permenence and treatment? It’s hard enough just finding a GP to agree to take on
all your complex care these days , most GPs Certainly don’t want to take on DSP or NDIS beaucracy .
In all my experience working with doctors I’ve never seen so many doctors pick and choose the highest paying or least complicated patients. When my GP retired no one in his clinic would take me because I’m too complicated and can’t afford their fees . Like workers comp and Insurance, there’s also a growing number of Doctors and specialists who are refusing to get involved with DSP & NDIS .
When I mentioned at my appointments I had some reactions to my Botox injections for weeks at a time my neuro would tell me it wasn’t due to my treatment or the injections. I had the clinical background and knew otherwise. I was just too ill too disabled , too frail , too worn out and too scared to say anything in fear if retribution or he was in a bad mood and refused to treat me.
He kept pushing expensive migraine treatments injections that were unsafe for me and I also couldn’t self inject due to my disability .
if I didn’t keep having treatment I would not meet the DSP and NDIS eligibility criteria because every few months the goalpost changes .
As years went by my neurologists aggressive bed side manner became intolerable and his threats to cease my Botox treatment became more traumatising . I still couldn’t find another neurologist to replace him after a decade of trying desperately. No other neurologists had their books open or were taking new patients
over the past two decades. I had to get second opinions out town . All suggested I gofor the new safer oral alternative he was pushing me to also take as break through medication . The down side it was not subsidised on the PBS and it was $40- 50 a tablet a day ! I could not afford to take this every day and had to go without to afford buy a pack of 4 it came in as I’m on a pension living day by day .
Is this the new higher definition of NDIS permenence and treatment we must meet or meet again ? I live in the city and the public system wouldn’t take me . The male public and private neurology consultants over the past 30 years said it was in my head. Some of them highly revered . Yet they all missed my EDS ME MCAS and POTs. For past 10 years I couldn’t find a new treating neurologist . Under the past and current and proposed definition of permenence and treatment disabled women like me were always ineligible for DSP and NDIS . Will we always continue to be ineligible for DSP and NDIS when the NDIS criteria if treatment and permenence is tightened up ?
If I needed a female specialist due to trauma culture or religion I didn’t find any as the one female neuro I found in 30 years retired shortly after.
All the male neurologists I tried to see in the past refused to see anyone for DSP and NDIS .
Based on the new proposed criteria I wouldn’t meet the eligibility for DSP and NDIS?
Two weeks ago my neuro refused to give me my 3 monthly Botox treatment and my treatment had worn off 6 weeks ago. I’d already been experiencing out of this world migraines for 6 weeks . It permeates my sleep , communication, my vision, my function, my entire day . There is no quality of life and I wanted to crawl under a rock and die .
I had another fall .
This same neurologist who pushed me to have self injections of a monoclonal antibody (MABs) before they were even approved on the PBS like clockwork pushed it again last appointment. Again he would not answer any questions or allow me to ask so i could not make a fully informed decision . I asked about the serious mab reactions he shut me down and said there were none and they were not MABs but receptor blockers . I asked about the systemic impact of the injections and he said they were localised . MABs stay in your body for 3 to 6 months. To me it’s frightening and like having covid vaccines . To which I had really serious adverse reaction to and many other treatments . I was also still recovering from a previous fall . I politely declined and made excuses avoiding any conflict . I could not make a informed decision and I could not afford it . He became passive aggressive and angry.
I was always silenced and could not ask any questions in fear of reprisal and when I did get one in he would fob me off, get upset, tell me off like a child (we’re the same age see) , wouldn’t answer, or tell me to make a seperate appointment . He would never discuss the impact treatment has on my disabilties , take them in to account , or consider how these new treatments will impact me and my quality of life, or my disabilties.
I had to put up with similar behaviour from my previous specialists who were also male, and also the ones before them since I was a teenager. I could not speak out for fear of any reprisal or repercussions from them and culturally we could not .
Will all this mean I will constantly be living in fear I will not be eligible for NDIS every time there is a “new” or experimental treatment or if I have no doctor to go to ?
It is for the above reasons I do not agree to passing of this bill as it will mean I have to be constantly reassessed and re exposed to treatment, new treatment, or experimental treatment that I know nothing about and you all know nothing about ( there is no longitudinal studies in women of child bearing age or fertility in women ) for the rest of my natural life in order to stay on DSP and NDIS .
Why do we need to keep reproving our disability like criminals every year our invisible disabilties and health related disabilties don’t just magically disappear when we’ve had it all our life, it’s also a waste of resources and tax payer funding ?
The harmful narrative that government staff keep spinning that pain is cureable when you’ve been so disabled by it most of your life , your specialists and doctors have already spent half your life trying to help you and you spend the next half proving to the government with 20 self paid functional reports that for a small number of people do not respond to pain treatment .
If you change the permenence and treatment criteria for one program you will also change it for all others.
More treatments will make me sicker, frailer, and more disabled than I already am . I have no quality of life . NDIS allow me to stay alive and do nothing else .
I had to put up with similar behaviour from my previous specialists who were also male, and also the ones before them since I was a teenager. I could not speak out for fear of any reprisal or repercussions from them and culturally we could not .
Will all this mean I will constantly be living in fear I will not be eligible for NDIS every time there is a new treatment or if I have no doctor to go to ?
As a result I live with chronic daily migraines and am severely disabled by it . I could no longer work and was not eligible for DSP or NDIS because I did not meet the criteria for Treatment and Permenence for over 20 years . Will this mean young women who live in the city like me in the future will never be eligible for NDIS because you have to meet medical permenence and treatment every year even though disabilties are about significant reduced function ?
My DSP and NDIS assessors never had any medical experience. One was a councillor I think and another a exercise physiologist . My neurologist and pain specialists including ones before them would not support my application for any disability support , or for DSP and for NDIS . How will we ever meet the new permenence and treatment eligibility if we can’t even get a specialist and if they don’t even understand health related disabilties ? We certainly won’t if our external review rights are removed ?
I heard what the NDIS ministers , policy writers , and CEO said at Senate and everyone will just be rejected and have to keep reapply without any external review rights . Without external appeal rights it took 20 years to get DSP and NDIS of constant reapplying without any external appeal !
In my 20s I had tried every approved and unapproved medicines . Even experimental . It affected my FERTILITY but nobody cared they were male and white . I was just a disabled female of a different culture who they could manipulate, traumatise, experiment on and try to “cure”. They didn’t not care my body could not
cope any longer and never asked me what my aspirations and goals in life were and if I did they did not care .
In my 30s instead of finishing my PhD , getting married, having children, travelling, visiting family, going on holidays, breathing fresh air every day , living a wonderful life and a wonderful career like yourselves . I was not only battling my male neurologist and specialists but also the government system . To be constantly told I have a mental health problem when I didn’t and that it is all in my head. One specialist even called and apologised to my doctor and retracted their letter and referral to their mental health team . For 20 years I was made to sign contracts with male councillors like a naughty child ! I used to be a well respected professional .
Inexperienced DSP and NDIS assessors telling me I didn’t meet the eligibility criteria when they didn’t even understand what my neurological disabilties were . I had to fight my OTs for 20 years to include all my impairents / disabilties . They all said they were pros even but obviously not they were also not trauma or culturally centred. Not one captured my physical disabilities and neurological problems including injuries being bed ridden for 20 years . Even the IME OT dispensed a dementia and mental health assessment on me!
To meet the NDIS and Disability treatment and permenence criteria I was told I needed to see a councillor for my neurological and physical disabilties. It was apparent after 10 applications these free organisations and gov assessors didn’t know how to apply and assess anything else except psychosical and Autism I had a Lp 16 administered on me Vineland ados.
My Frankenstein journey - my first male specialist wanted to have experimental wires implanted into me for my migraines like Frankenstein . Unapproved by the TGA and not listed on the PBS . Never mind I was of child bearing age and had a wonderful career they were intent in destroying . The Frankenstein neuro stimulating implants was a career and money spinning bonanza . They told me never to go on Centrelink as once I start I can’t get out of the viscous cycle never mind that I had no income or food and couldn’t work . They also won’t support Centrelink applications . That’s how privileged men and medicine became . They made me buy insanely expensive imported vitamins from the US and compounded experimental health alternatives to prove I was being compliant when I couldn’t afford them as I hadn’t worked for years and didn’t have income . I had nerve block treatments with this pain specialist numerous times and feared I would not wake up as there was complications . I was bedbound for months after in bed. I could not lift my head . It was “never due to the nerve block “. My last procedure with him I was so scared I wouldn’t survive , he was under investigation . I was freaked out about anymore procedures . He still continued to pressure me to undergo this experimental implant but he would not answer my questions . History repeating itself . The same cycle of medical abuse. All his patients now had to attend the public hospital for a compulsory full day brainwashing you’re not in pain pain management course because of him being investigated making me even more concerned about what he did to his patient . I had already been to many over the course
of 20 years but everyone seemed to think theirs was more survival. As I couldn’t even sit up or get through a hour let alone a day i was discharged from the hospital and his care like I was a drug seeking addict , which I never was . I recently found out I have EDS and that would explain my difficulties with Anesthesia foreign bodies and reacting badly to most treatments . Also my wounds won’t heal properly so my whole body would be scared like Frankenstein at 30 if I had been forced to have the neural implants ! This was the level of treatment and permenence my assessors deemed I needed to meet in order to be eligible for DSP and NDSP !!! If they tighten up the permenence and treatment criteria I would not be alive to write this and if I did live I would be scarred like Frankenstein!!!
I still needed migraine treatments and that’s how I came under the “care “ of the doctor who would gaslight abuse and traumatise me for the next decade. I had to make many excuses and avoided discussions about the neural implants until I was simply exhausted ran out of excuses . He would not listen to my goals and aspirations . I did not want to be constantly experimented on and made sick by it , my body was worn out after 30 years of medical abuse . .
My final diagnosis in 2026 vEDS- I had mitral valve prolapse (yes severe chest pains for 30 years no cardiologist would see me) , ME , POTs , MCAS and hEDS. They were all missed by all my male doctors and specialists until my 50s. I pushed and pushed for answers and kept being referred from one male abusive specialist to another.
I failed access to DSP for almost 20 years because my assessor and complaints officer said I never had the neural stimulation surgery . The Frankenstein surgery !
In my 30s and 40s I had trouble conceiving because I was forced to take so much chemical medication for my migraine and pain 20 years worth . Not all medications had been adequately tested on women of child bearing age and others did not have enough long term data. Some were considered teratogenic .
In my 40s I was refered to my last neurologist for Botox treatment . Even thought it was helping he would cajole gaslight and bully me into trying to use unapproved experimental treatment that hadn’t even been approved by the TGA at the time. I know because I worked on those new research treatments and how little lifelong data they had on women of child bearing age or disabled women . Again I sought second opinions from anyone out if town , they all supported me in continuing to use Botox rather than monoclonal antibodies due to my past medical history . I could not find a new neurologists in town most had closed their books and u was on every waitlist . My Botox neurologist would not allow me to ask any questions about any of these new expensive experimental unapproved treatments.and it’s impact on my disabilties . I was constantly reminded that he was the boss and if whatever treatment he prescribed i need to have! He wanted me to me to fork out alot of money every quarter for treatment I could not afford ! He would berate me . I was patronised . I was Scolded. I was traumatised . Would he be in a good mood or bad mood this session . I was
silenced by him for ten years. I lived in fear of seeing him every 3 months . I even asked a stranger who volunteered at the private hospital I had seen over the years if they would come with me to my appointments as a witness but they couldn’t take time off to help me . I was that desperate and scared . I sought multiple second opinions and they all said Botox was the safest course of treatment and they wouldn’t advise anything else . All other neurologists had closed their books or would not take on someone with my complex disability history . I made all the excuses my doctors and I could find and when I had my last fall with head strike 2 years ago my goal was simply to just survival . My body was exhausted . I was too disabled and unwell to take on anymore experimental or new treatments . Their treatment efficacy wasn’t wonderful or any more survival than what I was on . There was no reason to change my Botox injections I’ve had for 10 years as it was working just as well as the “new” treatments the latter I could not flush out of my system they last for months in my body . I shared my concern my serious adverse reactions , that I would react badly like I did with my covid injections when I could not lift myself upright for weeks .
I’m now in my 50s I was not eligible for NDIS because they assessed my chronic pain and migraines under mental health not neurological or physical .
My NDIS case manager a NDIS co-director and TAB (2 males ) said pain is cureable and its all in my head !
I tried desperately for 10 years to find a new neurologist . All were males. I was yelled by 1 neurologist like a child because with chronic daily migraines pain fog and disabilties they did not receive my referral and I did not remember to bring a copy of my referal . He accused me of Botox shopping. I could not ever go back to him .
I had to appeal to gain access to dsp and NDIS . I’ve spent 20 years in medico legal tribunal courts and hearing to gain access to any support .
The NDIS reforms seem to only focus on Autistic people and chemical restraint autistic people are subjected to what about the rest of us? Disabled Women of other cultures of child bearing age with chronic pain ? How about other disabled woman with chronic pain like myself who are subjected to government and medical abuse . Will the rules change for us? will we be constantly subjected to chemical restraint everytime someone comes up with a new experimental treatment until we’re 6 feet under ?
When you have cancer you have the right to say enough and the treatment stops and you go into palliation or be supported to the end of life with pain medication . Why has no one else ever asked me? Why can’t I have this choice as a severely disabled woman with chronic pain ? Why can’t I be supported by NDIS ?
I am in my 50s now! Robbed of my fertility and ribbed of 30 years of my life . When do I get a say in my body and say stop its tired it’s making me more disabled sicker and frailer just to keep meeting the eligibility section 24b permenence and treatment eligibility criteria - no
more experimentation stop DSP and NDIS just stop experimenting with people’s lives !
Yes it is human experimentation. The same thing our fathers, uncles, and grandfathers fought against in world war II and the evey reason the Declaration of Helsinki principals regarding ethical human experimentation was established in 1964 by the world medical association .
One day when I lose my mind will you keep pumping me with more experimental treatments for dementia ! I’m so worn out exhausted tired and done I wish VAD was offered for chronic pain .
I urge you to seek review of all current and proposed definitions of treatment of disabled women especially with chronic pain . Implement parts of the declaration of Helsinki .
I implore anyone who has daughters, nieces , grandaughters, female friends . I urge you to change all these laws. As we know from world war 2 being exposed to experimental treatment affects the 3rd generation of women your grand daughters if you haven’t been subjected to chemical restraint .
The current and proposed DSP and NDIS eligibility definition of permenence and treatment are dangerous for women with disability, even more for women of indigenous and multi cultural background. Dangerous to our health and safety. To our human rights. To our fertility. To our future .
Politicians , policy writers and TAB without medical experience should not be determining the eligibility of disabled women . DSP eligibility is now assessed by a INDEPENDENT external medical company Sonic . As someone from a clinical background who has decades of clinical experience government staff who determine define and assess these criterias must have a clinical background it is medical negligent to have decisions made by staff who have no scientific or clinical background but because the recruitment criteria is as low as having “lived experience” ! People with no formal education making medical decisions destroying disabled women’s lives .
I also don’t really see why DSP and NDIS disability criteria is being assessed medically . Since access is no longer defined by medical diagnosis then permenence and treatment should not apply or be a measure of disability .
The determination of medical permenence and treatment to meet eligibility must be removed or determined by a independment committee comprising of key opinion experts in their medical field who are apolitical. Similar to how members are selected to update medical guidelines and include lay and disabled committee members. A percentage just be disabled women . Hiring a committee member
or Board member simply because they’re disabled with no medical experience will be negligent .
The current and proposed DSP and NDIS eligibility definition of permenence and treatment are dangerous for women with disability, even more for women of indigenous and multi cultural background. It is Dangerous to our health and safety. To our human rights. It exposes women with disability to increased likelihood of chemical infertility , other illness and diseases , reduced life expectancy. It exposes disabled women to sterility , medical bullying, gaslighting , abuse, trauma , segregation , isolation and to our generational future.
Thankyou for reading my submission.