Submission 2208
Attention: Committee Secretary, Senate Standing Committee on Community Affairs
Submitted by email: community.affairs.sen@aph.gov.au
Date: 28/05/2026
My name is Alex, I am an NDIS participant and Disability advocate. I’m 26 years old and I have been quite Disabled since I was 15 years old. I have multiple medical conditions, with the most relevant being Autism spectrum disorder level 2, Multiple sclerosis (relapsing remitting) and Hypermobility spectrum disorder.
In February 2024 I was finally approved for the NDS after a long battle. They would only accept my Autism, for which I had one diagnostic report. I had countless reports for both HSD and MS. At the time, I was barely functioning, I couldn’t keep up with house chores, I couldn’t leave the house more than twice a week, and I could barely even get through a shower due to POTS.
It took another 12 months of fighting, continuous complaints and very specifically worded letters and emails from me and my team of doctors to finally get MS and HSD added to my NDIS, and then another 12 months of the same to get them to do a plan review and add the appropriate supports for such things to my plan so that I could actually use them.
The NDIS already has an extremely high burden of proof in order to get on the scheme, most people only get approved by submitting countless reports from multiple specialists and provide an in-depth comprehensive FCA (functional capacity assessment)
To get approved myself I had to submit a full Autism diagnostic report, a full comprehensive FCA from a qualified OT (Occupational therapist), letters from my GP, Physiotherapist, Neurologist, Rheumatologist, Cardiologist, Pain specialist and a letter I put together explaining which treatments are for what condition/s (because they couldn’t even decipher that much themselves- completely untrained staff decide our fate)
One of my conditions is on list B (Multiple sclerosis) “List B: Conditions that are likely to result in a permanent impairment”
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And yet, it still took over 12 months of back and forth and a full FCA in order to gain access to the NDIS for MS. I had to very clearly demonstrate a severely reduced functional capacity in order to get access. The idea that certain diagnosis gains you entrance is simply not true, list ‘A’ is the only such case of that and even then, you have to have a specific amount of evidence, you can’t just say “I have this disability now give me money”.
I know SO. MANY. People who have severe and life altering Disabilities that have not been able to access the NDIS due to the stringent criteria and barriers to access, yet continually the government wants to make it HARDER to access the NDIS, a move that is absolutely not reflected by the opinions of the Disabled community as a whole.
After finally receiving support, my world has changed so much for the better. I have multiple support workers who I employ independently, who help me to attend doctors’ appointments, do groceries, cook, clean and everything else in between.
Now that I actually have support, I have a job for the first time in my life. I’m able to actually go to the supermarket in person and choose out my groceries like the average person, I’m able to attend multiple doctors’ appointments in a week and still do other things. I’m able to do things I love more often such as gardening on my small balcony, instead of spending every waking minute just simply trying to survive.
I find the continuous attack on the NDIS and the media slog to paint the NDIS in a negative light a continual war on disabled people, and I’m not alone. I know many people who are seriously Disabled, can barely function, who are continuously knocked back by the NDIS and refused help. Yet the government’s answer is to continually make things harder, to tighten the reigns, to kick more people off the scheme when there are still so many who can’t even get on.
I see people in my community continually mentally distressed by these changes; scared for their lives, scared for the lives of those they know. I see people wondering how they will survive if their supports get cut, how they will go back to not being able to do anything if their supports get taken away. I see my support workers frustrated because they see the needs of
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their clients and worry what will happen when they end up with not enough hours to get the supports they need to have to survive.
Yet I see the mainstream media and the average joe celebrate our downfall continuously.
The new changes are particularly terrifying.
I just fought to get my community participation budget raised, as it was one of the only budget categories I completely depleted in 2025.
I don’t use it to go to the movies.
I don’t use it to go for coffee with my support workers.
I use it for going to doctors appointments at the hospital.
I use it for going to the supermarket and the pharmacy, to get things I need to survive.
If they cut my budget by 30%, that’s 30% less times in the year I can go outside my house and do important things. I’m going to break down the funding that I have. I have funding for 104 days of Community access for 12 months. That’s only 2 days a week. Two days a week I am able to leave the house with the safety of a support worker. If they cut that by 30% that leaves me with about 1 and ½ days a week I can use support work outside of my home. How is that enough time to even go to Dr’s appointments, go to the supermarket, go to the pharmacy, each week, let alone do literally anything else.
But hey, even if I did want to use my budget to go to the movies or for coffee with my support worker, that’s my right to do so, Disabled people deserve to do more than just go to doctors’ appointments and do the bare minimum to survive. If I can only do recreational activities with the help of a support worker, then I need that support and that should be okay.
The push to change to mandatory registration of supports also concerns me. I use all of my support workers completely as independents, and I always have from day one. I have heard NOTHING but absolute horror stories from people I know about support work agencies. Employing my supports directly means;
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- I always get the same person, know who I will be getting and when
- No annoying middleman who takes a big cut of the fees, all the money actually goes directly to the person who is helping me
All I have heard from friends about agencies is that they continually cancel shifts at the last minute, send whoever they want to shifts, have ridiculous cancellation policies yet find it acceptable to cancel on a Disabled person 1hr before a shift. And they take a huge cut of the fee for the privilege. And these are the so called ‘registered’ providers who are ‘doing the right thing’ and ‘the way forward for the NDIS’ (why they want everyone to be registered) The NDIS continually doesn’t even act on complaints that people put forward about registered providers, whether it be fraud, abuse, ever you like. Continually ignored, ‘not enough evidence’ is the response most people get. What is the point of forcing everyone to register when the NDIA and the NDIS quality and safeguards commission don’t even act on most of the complaints they receive. What does that actually do to fix any of these problems.
I also have a lot of concern over the removal of whole-of-person assessment, replaced by single eligible impairment consideration (Schedule 1 Part 3). I have three very distinct medical conditions, as do a lot of Disabled people, it’s quite common to have more than one, a fact the NDIS completely understands. Each of my three conditions affect me in VERY different ways, to force me to choose one would mean that there are whole areas of my life that aren’t getting support, and would ultimately reduce my functional capacity. I can’t get psychology supports under physical disability, which I rely on for my Autism to help me process things, problem solve and go through/learn coping strategies for emotional distress related to being Autistic. My meltdowns have gone down DRASTICALLY since receiving this support on a regular basis, something I could not do beforehand due to being too poor to do so, on the DSP.
My Multiple sclerosis creates problems such as numbness in my legs, bradder issues, cognitive issues and temperature dysregulation, all things that are very difficult to manage on my own without the proper supports in place. I could NOT receive these supports under my Autism or my Hypermobility disorder diagnosis. My Hypermobility disorder brutally
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affects my joints, my joints are slowly breaking down due to frequent subluxation. I could not receive joint braces, mobility aids, or home modifications related to my loss of range of movement or other supports related to the condition under my MS diagnosis because it does not cause these symptoms. The notion of trying to separate these things and only allow support for ONE of them is absolutely barbaric and it WILL have an immediate negative effect on people who are forced to lose supports when only able to pick one condition. My functional capacity would go very backwards very quickly without the supports I have now. For the first time in my life I actually feel more akin to a regular member of society, I’m able to go outside more, work from home, attend appointments, with ease instead of suffering through it all.
I am EXTREMELY concerned about the I-CAN assessment tool and have been since it was first announced. This tool will absolutely not capture people’s conditions fairly or accurately. My own experience with NDIA staff over the last few years has showed me that they absolutely would not have the knowledge or experience necessary to carry out an assessment like this in a reasonable manner. My own FCA contained EIGHTY ONE PAGES. Including information from a WHODAS, Spider questionnaire (Hypermobility specific screening tool), Bristol Impact of Hypermobility Questionnaire (BIoH), Fatigue Severity Scale, Lower extremity functional scale and an Upper extremity functional scale. It also included over 4 hours of face-to-face time in my home with my OT and then many more hours collating all the information together and writing up the report. The fact that any of you think that all of that can be achieved by ONE tool, administered by someone not medically qualified in an hour- can do the same thing- is absolutely abhorrent and downright laughable.
I have absolutely no love for the I-CAN whatsoever, especially as someone that has rarer/misunderstood conditions (Hypermobility spectrum disorder) trying to get access for that condition was a NIGHTMARE due to staff being so uneducated, and that was despite the fact that I had multiple reports from multiple treating professionals who SPECIALIZE in the disorder and yet the NDIA/S still couldn’t get their head around it and grant me access despite the fact it’s been disabling me for over 10 years. There
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was a decent paper trail of 10 years of treatments and troubles, at one point a staff member even told me “there is no evidence of Ehlers danlos syndrome” yeah no shit, because that’s not even the condition I was applying for! So of course there isn’t!. HSD and EDS are very closely linked but very much distinguished as two separate things and it was very clear in all my documentation that I was applying for Hypermobility spectrum disorder and not EDS. Yet they still couldn’t even get that. And you somehow expect these types of staff to administer an assessment to people when they can’t even work out something that would take a 3 minute google search? It is an insult to disabled people across the nation.
None of these changes will actually really do anything to fix the real core issues of the NDIS. The NDIS continues to present fake solutions to the problems they create which in reality only continue to punish disabled people and take away our choice and control over our own lives. they set the price guide. They set the entire thing up. Yet somehow it is OUR fault that it isn’t going the way they want? We are simply using the system that they set up the best we can in order to survive.
Everything in this amendment is an insult to Disabled people across the country and is downright infringing on our rights as human beings. You want to take away our autonomy, our independence, Our right to review decisions, to question things. Won’t let us have more than one disability when medically that is quite uncommon, and don’t seem to care one bit what actual medical professionals say or want.
One easy way to cut money would be to stop spending hundreds and thousands of dollars every year fighting AGAINST disabled people at the ART with lawyers; but not by stopping people from going to the AAT at all- but by just giving people the supports they asked for in the first place. It would genuinely just cost less to fund the supports than to spend millions trying to prevent people from accessing supports. Especially when the AAT just often ends up siding with the participant and awarding what they asked for; ultimately just wasting tons of money and resources on both sides. But sorry, I forgot, the average tax payer in this country has a grudge against anything they see as a ‘hand out’ because we live in a dystopian society where it’s not okay to help the disadvantaged. Cool system we have here.
Submission 2208
Signed Angrily,
Alexandra Paine.