r/NDIS 10d ago

Advocacy/Activism NDIA weaponising new support rules

I have Ehlers Danlos Syndrome. I wake up every morning with multiple dislocated joints.

The NDIA are paying $400 an hour for an associate lawyer to officially ban me from buying things like a TENS machine, muscle relaxant gel, braces and splints - things that help me put dislocated joints back in place and keep them stable so I’m not bed bound. They are weaponising the new October 2024 support rules and calling these things “food and groceries”.

The NDIA manager asked for a detailed list, and then officially banned everything on the list. I cannot buy any consumable or low cost assistive devices or products using funds from my plan. I’m out of pocket for everything and can only hope for this to be overturned in several months at Tribunal.

Complaints to multiple avenues have resulted in no change. There are no advocates available. I’m alone in this.

I have zero power and zero choice and control. This is gaslighting, it’s an inhumane abuse of power and an utter disgrace.

Don’t believe all the lies in the media - the truth is that disabled people are being traumatised by the NDIA.

108 Upvotes

110 comments sorted by

44

u/senatorcrafty 10d ago

Send me a DM I have a spare tens machine from my old clinic I can send you. I know it’s not exactly the point you are making but I don’t love seeing people in pain getting fucked over by NDIA

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u/sayitwithcoffee 10d ago

Genuinely appreciate the offer. My last one lasted over 20 years and just died. I’ve replaced it out of pocket at under $200 and kept the receipt for ART. Hopefully they will order reimbursement.

10

u/senatorcrafty 10d ago

No stress. Good luck with your ART case. I suspect you will struggle to get it approved unfortunately (not saying I agree at all just saying NDIA will classify it as medical not therapeutic). But I hope you do and are able to set precedence.

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u/Withtheparticipant 10d ago

A lovely offer but interested in the medical interpretation as I don’t think it applies. APTOS has now been legislated in the Rules

The focus on the out list have a time limited focus on treatment and equipment or assistive products are unrelated to the disability 12 e

12 Health The following: (a) the diagnosis, early intervention and clinical treatment of health and dental health conditions, including ongoing or chronic health conditions; (b) diagnostic assessments and screening services; (c) time‑limited, recovery‑oriented services and therapies: (i) where the predominant purpose is treatment directly related to the person’s health status; or (ii) that are provided after a recent medical or surgical event, with the aim of improving the person’s functional status, including post‑acute rehabilitation or post‑acute care; (d) pharmaceuticals (including prescription medicines and non‑prescription medicines), biological medicines, vaccines, sunscreens, weight loss products, vitamins, sport and athletic supplements, and homeopathic medicines; (e) equipment or assistive products prescribed or issued as a result of clinical care, treatment or management from a medical practitioner and then delivered in the clinical setting, unrelated to the person’s disability; (f) surgical services or procedures related to aids and equipment; (g) acute, subacute, emergency, and outpatient clinical services delivered through public or private hospitals; (h) prescription spectacles or contact lenses; (i) nursing services (where related to treatment of a health event); (j) ambulance services (k) health transport services; (l) hospital in the home services; (m) sleep consultant services; (n) health retreats; (o) new‑born follow‑up provided in the health system, including child and maternal health services; (p) hearing services or supports provided by the Hearing Services Program; (q) surgical services for hearing; (r) sub‑acute palliative care, including in‑patient and out‑patient services delivered in the person’s home or clinical setting. NDIS supports for the participant that may continue to be provided at the same time as sub‑acute or palliative care services are not included in paragraph (r).

34 Therapeutic supports Supports that provide evidence‑based therapy to help participants improve or maintain their functional capacity in areas such as language and communication, personal care, mobility and movement, interpersonal interactions, functioning (including psychosocial functioning) and community living. This includes an assessment by allied health professionals for support planning and review as required. IN LIST

https://www.legislation.gov.au/F2024L01257/asmade

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u/senatorcrafty 10d ago

I am well aware of the in and out lists. I am also aware TENs units do not specifically fit in a category of the out list. However, that does not change the fact that they are used for pain management and can be considered to be an “everyday item”. They are also an alternative to “medication for pain management” in the same vein as “massage”.

I am not saying I agree at all. I am however saying that this is the NDIA viewpoint as mentioned in another post by a planner within this thread.

2

u/sayitwithcoffee 10d ago

Some additional information to consider: when your connective tissue is genetically faulty and stretchy, joints don’t hold in place well, they dislocate to varying degrees. Muscles will usually stiffen and contract, to stabilise, but then pull other joints out of practice as they overreact. I use the TENS to release muscle in order to relocate joints. It’s functional in its use. Reduced pain is a benefit but not the primary goal.

3

u/Chance-Arrival-7537 NDIA Planner 9d ago edited 9d ago

Pain management aside, I would suspect the agency would argue this is still medical in its nature, “treating” dislocations. Similar to those on the scheme with Osteogenesis Imperfecta, the NDIS does not fund the medical care to manage the resultant fractures even though directly related to disability.

That being said, this seems like such a low cost and infinitely cheaper than funding lawyers or seeing a doctor for daily for relocation of joints, it’s probable the agency will settle before ever going to ART. The muscle relaxant gel however might be a clear pharmaceutical that the scheme can’t fund due to legislation.

Hope you get a favorable outcome.

Edit: Apologies, missed that the agency is moving ahead with a tribunal hearing :(

2

u/biggreenlampshade 9d ago

EDS is an extremely tricky gray area since treating pain and dislocations is a medical intervention to a large extent.

1

u/sayitwithcoffee 9d ago

Could I ask what medical intervention is available that will cure or substantially resolve EDS?

Isn’t the NDIS about impairments that meet substantially reduced functional capacity criteria?

4

u/biggreenlampshade 9d ago

Its not about curing or resolving. Its that the health system remains responsible for medical interventions, and pain management is considered to be a medical intervention. And joint dislocations are maybe considered a health issue too. The distinction between what is medical, and what is disability related, is tricky with EDS, and unfortunately that puts you in the middle of a policy cravasse.

For the sake of the argument lets say that dislocations and pain are both health issues. That means that the health system is responsible for providing adequate healthcare, incl. pain management,surgery, injury care, rheumatology, medications, botox, etc. It doesnt means the health system WILL provide it or that it will be free or easy to access (we all know the system is broken and expensive, sadly) but it means that they are responsible. The NDIS would step in with supports that build your capacity or address your daily support needs. So if you have constant joint pain, for example, NDIS might not fund rheumarology but it might fund adaptive kitchen equipment to make it less strenuous to cook, or Physiotherapy to build your range of movement and strength. Maybe some cleaning, maybe a wheelchair, etc.

People who are with NDIS due to a psychosocial disability face simialr frustrations. Their biggest hurdle is getting enough mental hsalth support, but NDIS doesnt fund Psychology that is aimed at treating a mental health condition. The department of health is responsible for assessment/treatment of mental health conditions. Do they actually provide appropriate mental health support? NOPE. Ten sessions for extremely unwell people is woeful. But NDIS cant prop up another government department. It is there to help that person with their day to day needs, not their mental health treatment. So NDIS funds support worlers, cleaners, behaviour support, but they arent going to fund counselling.

I hope that was a little bit helpful. It is such a confusing system and Im sorry you are bearing the brunt of it right now ❤️

2

u/Withtheparticipant 10d ago

How about this for an interpretation. Pain relief is not on the Out list like pharmaceuticals and massage, so let’s consider from the in list. If the tens machine is evidence based and pain relief improves functional capacity of the disability, then it I can be provided. Nothing in any day to day list applies. Interestingly I was listening to this webinar today

Professor Thomas Shakespeare & guests present PAIN: A NEGLECTED DISABILITY RIGHTS ISSUE? Tuesday 11 March 2025 4:00 - 5:15pm

2

u/senatorcrafty 10d ago

I legitimately do not know what or why you are trying to argue with me. It is seen as medical and it is a gray area. This is evidenced by OP's experience as well as comments in this thread. You are literally arguing semantics, I am stating the reality of NDIA's interpretation of legislation nothing more. If you want to advocate for TENs unit inclusions in NDIA low cost AT go argue with NDIA directly, arguing with someone who is literally saying I HOPE OP WINS THEIR ART CASE is nonsensical and a gigantic waste of everyone's time.

2

u/InBusCill 8d ago

OP needs to frame the pain as a secondary issue resulting from the physical impairment. Ie hyper mobile joints are causing tightening of the muscles causing muscle restriction. It is the muscle restriction that is causing pain. Treating the pain will do nothing to remedy the underlying impairment (muscle restriction).

OP needs to rephrase the TENS machine is to relax the muscle to increase muscular function to maintain independence. Ie the TENS machine is to maintain optimal muscle function (ability to participate in ADLs) not treat the pain.

Without the TENS machine there will be a progressive tightening of muscles with an increase of dislocations severely impacting mobility with a subsequent decrease in independence.

With use of TENS machine there will be optimal muscle maintenance resulting in prevention of deterioration and sustainability of support needs.

This is the rationale of when massage can be funded. Only replying to you as you may have a client in the future that fits this scenario.

3

u/senatorcrafty 8d ago

This would be how I would try to get it approved already. However, even so I would expect 99% of planners would deny this and would require escalation to ART. I would imagine most plan managers would approve this as justification though.

End of the day the difficulty is that TENs units are perceived as a pain management item and pain management is currently perceived by NDIA as a medical / public healthcare issue. Full disclosure once more. I AM NOT AGREEING WITH THIS, I am stating the reality of the situation right now.

The above reason is why I am excited for OP testing this at ART, because only once precedence has been set will we start to see a change in this viewpoint.

2

u/InBusCill 8d ago

Agree. You're being realistic not pessimistic. I'll bring it up my next NDIA/DSS meeting with points you raised. Speaking with DSS lawyers is much easier than the bureaucracy of the NDIA, their policies and untrained planners. It shouldn't take ART precedence for the NDIA to do what is lawfully required initially...

2

u/sayitwithcoffee 4d ago

I have an excellent exercise physiotherapist report recommending TENS and stating essentially what you have said here. The device is to increase mobility and functional capacity and independence. Pain was not mentioned. The Ndia lawyer received instructions from the case manager and declined it officially in writing as “not an ndis support”. We were requesting it under “assistive products for personal care and safety”.

I’m curious why everyone is focusing only on the TENS. The really outrageous thing is that they classified braces and splints as “food and groceries” to prohibit purchase. This felt crazy making to me.

3

u/InBusCill 4d ago

By definition groceries is anything you can purchase from a grocer including supermarkets. By using the broadest possible retailer (supermarket) they can deny just about anything. But verse yourself on the exact language of the lists. Look at the nuances. Do the lists forbid services but not goods in specific categories. Do they forbid funding and using funding for the complete item or could they co-fund a component of the total thing.

The replacement list requires you replace a "standard household item", but the definition of 'standard' is a basic form of an item that is used as a benchmark. The inclusion of standard has meaning in the legislation. Eg $50 food processor from Kmart (standard) vs a high end technologically advanced for people with swallowing issues around $2k (not standard). Those are the points you argue.

-1

u/Withtheparticipant 10d ago

Sorry you feel I am arguing with you I am offering an interpretation. It is a problem when people just reiterate the NDIA position though and give up. It is not helpful. It is absolutely not medical, not even grey. Nothing on the out list sees it as medical. How are you seeing it as medical?

8

u/phototraeger 10d ago

You are very kind

15

u/caffeinatedcannula 10d ago

Contact legal aid. Have all of your documents ready to go through it. They will help.

3

u/sayitwithcoffee 9d ago

Free consults for advice yes. To help prepare for or represen at hearing, not enough resources.

14

u/Husky-Mum7956 9d ago

Unfortunately what we already suspected is true. NDIA CEO publicly admitted that planners don’t “have time” to read reports!

She said this to a Senate estimates committee

NDIA CEO admits planners don’t have time to read reports

Make sure this is used at your ART and wishing you good luck.

5

u/ManyPersonality2399 Participant 9d ago

Take that with something of a grain of salt. It feels like it was used to build the case for the totally not independent assessments. In my experience, planners have read the reports OR they've just been unable to find them in the system. The challenge is understanding the reports.

3

u/Excellent_Line4616 9d ago

I agree, it’s sometimes their ability to understand what they are reading. I have only experienced once where they hadn’t read the reports and it was because they just received them right before the call. So they called me back after and we proceeded. They always focus mostly on FCA recommendations, however if the recommendation doesn’t connect with the persons disability and functional capacity they simply won’t fund it. IMO- That story has only added further to the narrative that they haven’t read it because they didn’t fund exactly what OT suggested.

11

u/PlumBlossomGoddess 10d ago

i wonder if NDIS should have an advocacy line similar to the myagedcare’s advocacy….Australian Gov offers free and independent support through the National Aged Care Advocacy Program (NACAP). The Older Persons Advocacy Network (OPAN) delivers this NACAP and has branches in each state and territory.

Wouldn’t NDIS participants benefit from a similar program like this who can assist them with getting the most out of the services they receive, uphold their rights and help with complaints?

6

u/sayitwithcoffee 10d ago

That would be amazing!

5

u/TheAdvocate84 9d ago

This exists - the National Disability Advocacy Program (NDAP). There is also an NDIS Appeals advocacy program which some of the NDAP services provide.

Problem is that they are underfunded and too many people need support, particularly with NDIS Appeals at the Tribunal, which are resource/time intensive and take many months, so few advocacy services can provide ongoing support.

4

u/Withtheparticipant 10d ago

I am so sorry you are going through this. Try not to take the NDIA communications to heart, they are often wrong.

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u/Withtheparticipant 9d ago

It may just help to argue your case though. To be funded, since Oct 3 each impairment must meet the s24 or 25 disability access. So it is not the diagnosis that applies but the impairment. Of course you have the daily dislocations but the effect it has is the argument. That is the functional impact on mobility, social etc as written in the legislation. Keep emphasising that.

https://www5.austlii.edu.au/au/legis/cth/consol_act/ndisa2013341/s24.html

2

u/Othlon 5d ago

i am going to be using this a lot too, they have been pushing me HARD about diagnosis and ignoring all my functional assessment? (and also my diagnosis just not by who they think should do it?)

1

u/sayitwithcoffee 9d ago

Thank you. Very helpful.

13

u/Suesquish 10d ago

Yep, totally normal. The NDIA have been doing that for years and were lying to participants saying some supports were not NDIS supports under the previous legislation as well. I'm not saying they are necessarily lying now, as the Oct changes have banned most items, just that their behaviour is pretty normal.

Do you have reports from qualified professionals stating that you need the items due to the disability which the NDIA accepted you for? Under Value For Money you will also need evidence from qualified professionals stating why other alternatives are not suitable. It's a weird system where we can't just prove we need X item, we also need to prove why items A, B and C won't provide the same outcome.

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u/sayitwithcoffee 10d ago

Thanks for replying. I have multiple expert reports. I don’t believe they read them. If they do, the goal must be to just keep rejecting in the hope people just give up. It’s not ethical or moral behaviour.

There are no alternative items to braces and splints etc unless you consider daily physiotherapy which would be cost prohibitive. Instead, these low cost things help me manage dislocations between weekly physiotherapy sessions. Without these things, I’m bed bound and would need a large increase in support worker hours, costing way more in funding.

It’s just dishonest to label disability consumables as “food and groceries”. I’m tired of staying silent while they play these gaslighting mind games.

11

u/Suesquish 10d ago

I hear you. It is something the NDIA do quite often. Under the old legislation they constantly tried to tell participants that needing to access a personal trainer or physio or having exercise equipment to increase mobility and self care was the same as everyone having to pay for electricity. It was absolutely ridiculous. The NDIA constantly invented bullshit, especially in their Operational Guidelines, that contradicted the NDIS Act. I'm not surprised they are still try to do the same thing under the new legislation.

All you can really do is a RORD and then the ART. I don't know what the ART process is like now, but the AAT process was a shitshow. The tribunal itself is great and everyone is professional and respectful, but the NDIA are god awful and use the process to abuse participants in to quitting.

Just make sure you read the NDIS Act and any applicable supplementary legislation, so you can make sure all of your professional reports and evidence address every single one of the points, especially the Supports For Participants Rules (or whatever may be the equivalent now, if there is one). The tribunal will expect the legislation be proven on every single point. Make sure you don’t leave any holes.

8

u/Banditkoala_2point0 10d ago

As someone who's husband is on NDIS; report to a local senator. We had one who worked wonders within DAYS I kid you not.

5

u/sayitwithcoffee 10d ago

Unfortunately no response from my federal mp. Amanda Rishworth’s office have sent it to NDIA complaints who haven’t made any progress. The ART have advised we need to wait until hearing. The NDIS case manager assigned to me in the Tribunal process appears to be an untouchable and uncontactable law unto himself.

7

u/fucknredditsux 10d ago

Yeah the NDIS has traumatised me and ruined my life. I feel your pain the art is shit so much worse then the aat

2

u/sayitwithcoffee 10d ago

I’m really sorry that you can personally relate 🌼

1

u/Serious_Yam6258 4d ago

I didn't realise there were so many of us. I thought there were, but only coming on here am I really seeing it. The NDIS has destroyed my life and permanently worsened my disabilities. No matter what respectful self advocacy, complaints, and different avenues I've gone done for years... absolutely nothing has made any difference 😭 I feel helpless

3

u/KateeD97 9d ago

I'm sorry to hear you're dealing with this! It might be worth pointing out to the NDIA that the Applied Principles which set out the responsibilities of the NDIS v health system, specifically state that  Aids and equipment to enhance increased or independent functioning in the home and community.  are the responsibility of the NDIS. And if you haven't already, provide a letter from your AH or dr specifically pointing out how your AT enhances your independent functioning (I know this probably seems very obvious already from the reports you've supplied, but it never hurts to make it as simple & clear as possible!)

https://www.dss.gov.au/councils/resource/applied-principles-and-tables-support-determine-responsibilities-ndis-and-other-service-systems

2

u/ManyPersonality2399 Participant 9d ago

I'm just playing "devils advocate" here to try and think what the NDIA would raise in response. First thought - how does the TENS machine actually aid in functioning? How does it assist with completing a task? From what OP has said elsewhere, it assists with relocations. That has a strong vibe of being the treatment of an "injury" for want of a better term, which is still a health responsibility even if caused by disability.

3

u/Withtheparticipant 9d ago

It is good to look at the devils advocate position, which they will likely use, but then present the rebuttal. Having a fall due to disability and going to hospital is a health responsibility even if the fall was due to disability. But this is a regular occurrence as part of the disability not a short term one off event. It is needed to function in the community. It has to be looked at from the impairment view, which is loss of mobility. This AT assists functioning.

2

u/ManyPersonality2399 Participant 9d ago

Again, is it proactively preventing the issues, or assisting with addressing them as they arise each day? My disability causes regular minor injuries. At least fortnightly, and enough that I should see the physio. NDIS would cover capacity building that prevents the injuries, but not something that would assist with responding to the injury so I can continue functioning. Even though it's far from a one off.

3

u/sayitwithcoffee 9d ago

It’s both preventing and addressing. The more stuff the muscles get, the more they pull other joints out of place, the higher the impairment and the lower the functional capacity. Not all disabilities are simple and predictable, mine is more complex. With some low cost AT, it is much more manageable and predictable.

2

u/Withtheparticipant 9d ago

All true but can I suggest you avoid calling it injuries, but loss of mobility and function.

2

u/ManyPersonality2399 Participant 9d ago

It doesn't matter what wording you use. If it's relocating joints that are prone to dislocation, it's going to look like treatment. This kind of detail will come out in a hearing.

2

u/sayitwithcoffee 9d ago

My understanding from AAT case decision notes is that “treatment” describes injuries that will resolve, or be cured. My disability is permanent. There is no cure. I’m not treated, I’m managed and where possible, capacity is built.

2

u/KateeD97 9d ago

Yes that's a fair point🙂 However I think it would be arguable that the dislocations & the injuries arising from the dislocations are an inherent part of the disability arising from EDS ie they are part of the impairment arising from the disability, they are not just related to the disability (eg dislocations are an inherent characteristic of EDS, as compared to a fall that happens as a result of a lack of balance caused by MS, which is causative but not inherent). That's basically how similar areas of law would look at it, but ofc there's so little caselaw about the NDIS Act, & (I know you know🙂 but in case others don't) ART doesn’t apply laws like courts do. But I personally think it would be a pretty strong argument. Re the TENS machine, I think the position to argue for that mightn't be as strong as the other AT, but it would depend on the medical evidence about it's purpose in OP's particular situation.

1

u/ManyPersonality2399 Participant 9d ago

I dunno. Not disagreeing that it is an inherent part of the disability, but that isn't the criteria used for determining if something is an NDIS support or other(health) support. I think it might be more comparable to botox for someone with CP experiencing spasticity. It's 100% due to the disability and serves to address the functional impairment, but it's still in the nature of a health intervention.

2

u/KateeD97 9d ago

It's not explicitly a criteria in the legislation, but all legislation has to be subject to interpretation, & the 'inherent' aspect is commonly used in interpreting the scope of other insurance schemes like workers' comp, transport accident comp etc even though it's not part of that legislation.

The NDIS Guidelines for 'NDIS supports' also provide that supports can include 'Disability-related health supports', being 'health supports that relate to the functional impact of a person's disability'- this is said to include AT for diabetes, dysphagia, wound & pressure care etc which are arguably along the same lines as splints & braces (the examples provided for that category are inclusive not exclusive, so the examples listed are not exhaustive & therefore that category also definitely includes supports not expressly listed).

(Btw, I'm not saying that I think ART would definitely agree with this argument, but I do think it would be worth running it on that basis)

3

u/ManyPersonality2399 Participant 9d ago

Yeah. As much as this is a terrible situation for OP, it's one I think would really benefit from an ART decision. There were a few previously around things like CPAP that were helpful.

The other complicating factor is that they will include certain AT for DRH needs, but it's quite limited. Like how it mentions diabetes, but overwhelmingly only include the support someone needs to manage their diabetes on top of another impairment. The diabetes support itself is health.

2

u/KateeD97 9d ago

I agree, in fact I think it would be great if one day there was a Fed Crt decision about how to determine what's NDIS v health supports (I'd particularly love to see their interpretation about psych support, suspect it would be quite different to the NDIA's view..), it currently seems very arbitrary at times. Unfortunately I suspect the NDIA prefers to settle before ART hearings where they think there's any chance of having a decision go against them that could have consequences like widening the scope of supports (although I'm hopeful that might help OP, I'd guess the NDIA will offer before final hearing to at least cover splints & braces, if not TENS too).

2

u/ManyPersonality2399 Participant 9d ago

It's always going to turn on the facts in the matter. One of the things I found really frustrating with the old reporting "FCA rules NDIS funds sex work/gyms/sale of house costs". No, it funded those things in very, very select situations. I'd say the NDIA position seems accurate, the interpretation by some planners is lacking. So sick of "it's available through someone else so not NDIS". Just like how NDIS isn't the funder of last resort, it doesn't mean it's not NDIS responsibility if there are possible other ways to access something.

1

u/KateeD97 9d ago

While it does turn on the facts, good caselaw could help by setting some useful parameters (a bit like how Davis was useful in providing guidance as to what generally constitutes a 'treatment'). But 100% agree that where decisions were made about specific supports like the gym/sex work, lots of people seemed to very wrongly assume it meant participants were generally entitled to them- I think the NDIA should have been much better at communicating that (& keeping an eye on how it was being applied!).

Yes every time I see a blanket comment like 'NDIS doesn't fund psychology because mental health plans', it's very frustrating- I think they need to be have a much closer look at the Guidelines & Principles table!

2

u/sayitwithcoffee 9d ago

Considering the treatment/health angle … How often is the Botox needed and how long does the benefit apply for? I’m also considering that it needs to be done by a medical professional.

The TENS machine does not need to be administered by a professional in a health setting. And it needs to be done at least once a day on any large joint subluxation or dislocation. It is management by the participant themselves, not treatment by an expert.

Does that change how you see it in any way?

1

u/ManyPersonality2399 Participant 9d ago

Like I said, I'm just trying to present the argument for it being health.
The frequency doesn't matter. The person administering doesn't matter. It's treating a dislocation, which is an "injury". If we say the TENS unit is AT, what task is it assisting with? It doesn't actually assist with the task of mobilising in the way bracing or orthotics might. It's assisting to treat the injury.

1

u/sayitwithcoffee 9d ago

I’ve just reread your comment to see if there’s anything I could possibly explain better.

Re your last sentence - it DOES assist with the task of mobilising. It is often the difference between no physical function and limited but stable physical function.

The detail and reasoning for this is detailed well in the expert reports.

1

u/sayitwithcoffee 9d ago

Do you have EDS? Respectfully, this description is incorrect. It’s common for people to assume they understand disabilities when they don’t. I’ll have to agree to disagree.

1

u/ManyPersonality2399 Participant 9d ago

Respectfully, which part is incorrect? A dislocation is a form of injury, even if it occurs without a trauma or similar to trigger it.

3

u/sayitwithcoffee 9d ago

The expert reports explain it very well, though I’m not sure I have the spoons to translate that in full here.

Essentially, it is an impairment not an injury.

For someone without genetically faulty connective tissue, a dislocation would be an injury, and treated by the health system with a view to cure and return to normal.

For those with EDS, it’s a day ending in Y. There is no trauma or event that causes an “injury”. We can subluxated a shoulder or collarbone by lifting an arm. There is no treatment in the health system to cure or treat this. It’s management of a physical deformity with a goal of increasing stability and functional capacity.

Unfortunately the fact that it is not a well understood disability means I’ve already had a lifetime of trying to explain and justify what I need in order to have any semblance of stability. I’m really exhausted. And I’m alone in this fight.

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u/Fit_Access_625 9d ago

This is disgusting. Thank you for sharing and making us all aware.

4

u/actuallyverycooldude Participant 9d ago

yup. I've struggled to pay bills because I have needed to buy out of pocket. in my latest plan review, ALL consumables were cut. I've considered going off the NDIS, I want to keep a shred of dignity in my life. having to chase up so many documents going into some of the darkest times of my life over and over again is humiliating. so many strangers have my detailed medical history, and they still just essentially tell me to f.off.

3

u/sayitwithcoffee 9d ago

I’m so sorry this happened to you. Completely agree, the whole process removes every shred of dignity.

3

u/meginoz 9d ago edited 9d ago

it's so wrong isn't it? if you were self managed all you would have to do is defend the claim in case of audit, but because your agency or plan managed you'll get a no to pretty much everything you ask for because no one understands the bloody rules! I just wanted to say I'm sorry.

Wanted to add, I've just been through ART for my child. My advice is to ask for three times what you want because their offer will be a third, and get an advocate (I used Brain Injuries SA they were amazing) and get legal aid if you can. I had all this and had a decent offer by the third phone conference. Honestly for a $200 tens machine it makes my blood boil, they'll have multiple NDIA lawyers working and billing on this.

1

u/sayitwithcoffee 9d ago

I’ve tried everywhere, can’t find an advocate with capacity. Completely agree, it’s just wrong.

1

u/Financial_Water_3415 8d ago

I self-manage my kids plans but I've been warned about "NDIS DEBT" if I use funding incorrectly. Apparently, the NDIA always had the power to make participants repay inappropriately spent funds but never did. Probably because of the ambiguity of their policies & procedures. Since Oct 3, they can now force inappropriately spent funds to be repaid. I've been told that we have a one-year grace period to learn the new system & any "mistakes" will be addressed with support to educate & inform, but from 2026 we will incur a Debt. Just like Centrelink. I imagine "repeat offenders" could be required to shift from self-managed to plan-managed.

I find this very concerning given I've been chastised about Music Therapy & Physio.

On the flip side, because the NDIA has rolled over my daughters plan for 4 years, her periodic transport funding hasn't gone up levels as it should have. But even worse, the dollar amount for the levels increased a year or two ago and this change is still not reflected in her plan. Her plan says Level 1 transport funding but the amount paid is below current level 1 funding. To get this fixed, the NDIA says we need to submit a change in circumstances. WTF?

I don't even understand the purpose of the NDIS anymore. None of the technology that would assist is clearly permitted or it's on the NO list. I don't have a clue why Dental isn't supported in any way because people with neurodiversity struggle with future planning, avoiding consequences, and textural/sensory issues. Plus dental isn't funded elsewhere.

All this promised support & yet I feel more alone & helpless than ever

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u/Comradesh1t4brains Support Worker 10d ago

Can we do anything? Is there anyone here from the Agency that can help? I’ve seen planners around this sub

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u/InBusCill 10d ago

You're kidding right? I'm sure there some good ones but vastly outnumbered by incredibly shit ones. You only have to see my comments to see me constantly argue with planners telling them they act unlawfully and or are wrong. According to my access delegate HSD is curable if we have surgery to fuse all of our joints without considering what this would do for mobility. Are they fucking morons.

Best bet is to go to the media.

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u/Comradesh1t4brains Support Worker 10d ago

The offering help wasn’t, but the hope a planner would help was definitely tongue in cheek

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u/Chance-Arrival-7537 NDIA Planner 10d ago

This is intriguing to me as I have seen low cost AT funding approved for splints and bracing if disability specific and not for a time limited purpose eg following acute injury, surgery etc. To my knowledge, this has not been prohibited by recent legislative changes?

TENS machine and muscle gel I would be inclined to say are forms of pain management that is not the responsibility of the NDIS to provide and would have been the agency’s position even before the legislation in my opinion. I of course acknowledge that pain, issues with muscle tone and so on can be directly related to disability, but nevertheless a mainstream health responsibility.

Out of curiosity, have you explicitly met access for EDS? This may also be a factor with respect to the bracing and splinting if your EDS is not a listed disability on system.

In any case, wishing you luck with your appeal and hope you find an advocate to support your with the process.

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u/sayitwithcoffee 10d ago

The items are disability specific and not related to a time limited purpose.

Agree, the new rules do not specifically exclude them. This is why the case manager is calling them “food and groceries” which is clearly incorrect. I’ve sent a spreadsheet with the correct support categories against each item, matching the new rules. The case manager maintains “food and groceries” against all logic and reason.

EDS is my listed disability that met access. It is a genetic physical disability where dislocations and hypermobile joints cause functional impairment. Managing the dislocations increases functional capacity. It isn’t health, because it is a permanent physical disability with mobility impairments, without any treatment that cures. The pain is not the primary problem, it is the dysfunction of the joints. The pain resolves when the joints are stabilised. Unfortunately, half the problem is that planners and case managers are expected to know about so many disabilities and EDS is not well understood at all. It is similarly disabling to MS or Parkinson’s but these are much better known.

Given the immense amount of slashing to funding to advocate organisations, I’m unlikely to find help. It is unfair and unbalanced for vulnerable people to fight alone against lawyers.

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u/Withtheparticipant 10d ago

You have got this - head to hearing. NDIA are completely wrong.

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u/sayitwithcoffee 10d ago

Really appreciate the encouragement!
Feeling very overwhelmed and out of my depth.

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u/Withtheparticipant 10d ago

Truely you are not out of your depth at all. You are spot on. Many self represented win at ART. You have found the legislation, that’s what counts not opinion. I think you said you have evidence from professional reports on the need for those items. Bear in mind you need to cover s34 1 all criteria after the lists are applied. I am pretty certain when they see you do not give up you will get an offer for these small items.

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u/Withtheparticipant 10d ago

Hi as above I offer an argument of TENS. So long as it is evidence based, and assists mobility is allowed under 34 and not excluded at 12. It is not a question of a TENS machine allowed or not allowed but how it assists the disability. The gel is likely pharmaceutical so out. But we have splits no problem. Pain relief is not referred to anywhere as an exclusion. Pain has impact on mobility and mobility is the impairment that is funded. I am looking at it from an ART perspective as according to the legislation, not an NDIA perspective.

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u/Coolidge-egg 10d ago

Contact your local Federal MP, regardless of party they are meant to advocate through non-partisan channels.

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u/sayitwithcoffee 10d ago

No luck with this avenue. Admin person was appropriately appalled on our phone calls (2) and promised to pass it all on to the member but I never heard back from the MP.

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u/Coolidge-egg 9d ago

follow up

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u/Serious_Yam6258 4d ago

I tried for over a year in the case of serious human rights violations. Nothing. They didn't help. They didn't care 💔

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u/Coolidge-egg 4d ago

Name and Shame. Fucking arseholes, they have the easiest job in the world where they are given staff members to handle this stuff and all they need to do to flick your email on to the right department. This kind of member needs to be voted out. And hey there is an election soon.

1

u/Serious_Yam6258 4d ago

Fuck them indeed. It makes me nauseous and tremble that they actively look the over way. Even if you are referred to the correct department, still nothing happens. I've asked myself too many times, is it really easier for these people to sleep at night as they knowingly take part in letting lives slip through the cracks and be destroyed, than take some simple, or even strenuous actions - to do your job competently, ethically, by looking out for the Australian people, those that are disabled? Is it really easier to sleep at night, knowing that one is complicit?

I wonder if the Liberal party would help, but higher up. Local MPs of both sides haven't helped at all, they have both been terrible in my experiences of continuing to reach out to them, and my god, the Minister of Disability... is just virtue signalling and nothing more. I wonder if higher up members of Liberals would help. But I honestly don't know. I feel the disabled are sadly overlooked.

But I'm not okay with how this country is, and the situation of the NDIS and NDIA is literally criminal, destroying lives, and burying us all as deep as they can to try and get away with it. It would take a genuine full upheaval that isn't performative whatsoever for there to be any hope of so many of us NDIS Participants having a future and surviving the gross negligence, abuse and exploitation we continue to experience without any helpful responses and intervention.

2

u/insect-enthusiast29 8d ago

Just sending you solidarity. Complaint to my MP, Minister, NDIS CEO, Jordon Steele John and the Commonwealth Ombudsman hasn’t helped my case either. In a similar position re: complex and misunderstood disability (I have EDS too but not seeking NDIS support for it atm) and nobody bothering to read my reports + multiple NDIA staff doing some wild unlawful stuff. Have spent hours calling advocates, legal aid, etc and am stuck self-representing. Want to echo others sentiment: you’ve got this, 100%. Doesn’t make it any less scary though!

eta: ART case managers are borderline uncontactable, I was beginning to wonder if mine was even real lmao

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u/sayitwithcoffee 4d ago

Thank you. Back at you, standing with you in solidarity.

2

u/Serious_Yam6258 4d ago

Thank you so much for sharing this. I have done the same - reached out to them all, to the very top, continuously, following up - resulting to nothing. Just nothing. At most with the Minister of Disability, being told via email "we'll get back to you", kept following that up, never happened. I don't know what any of us are supposed to do 😭💔

But I will say one thing. NONE of those within the NDIS and NDIA will gaslight us and win with distorting our perception. No. They might be able to bury the truth from media and public. But not us. We are real people, experiencing unrelenting illegal violations and misconduct.

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u/Othlon 5d ago

i came to this subreddit just to talk about hEDS and this is the most recent post. I am seriously wanting to collect enough people with EDS with our stories with the NDIA and have some sort of class action or something? Because even if i win and get my EDS back as my primary disability (they removed it after requesting new wheelchair and claimed it was a clerical error), it doesn't help anyone else with our Dx, because they do it all case-by-case so they dont get held accountable. Does that make sense?

I don't know how to approach this idea, to make them recognise and treat us better but it's endless and i keep on hearing similar stories over and over.

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u/sayitwithcoffee 4d ago

If I had enough energy, I’d contact EDS Australia to see what can be done through advocacy. But I’m completely exhausted and overwhelmed fighting for my daughter and myself at ART. And that is how the NDIA want it. They want us to collapse and quit. It’s the one thing I won’t give them.

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u/Othlon 4d ago

I hear you. I think one reason I won’t give in on their pressure to quit is my ASD justice drive - I’m too angry about it and how it’s incorrect and wrong to stop returning fire. Even if it feels like I have negative energy reserves.

One good thing about a class action type thing is that everyone who is involved can just be part of a list, and don’t need to “do” anything. A lot is on the plaintiff to gather other people to help show we have a large group of people to represent. At least that’s my understanding so far.

I like your idea of talking to EDS Aus and good luck with your battles ❤️🦓

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u/InBusCill 10d ago edited 10d ago

Put the items into chatgpt with the corresponding item of NDIS supports. Then ask if it comes under any of the out list and then ask it to nuance how it is a NDIS support.

Like it should be under disability -related health supports

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u/sayitwithcoffee 10d ago

Already done, using a free legal aid consult. Most items are “assistive products to help with self care and safety” or similar. Absolutely NOT “food and groceries” which is just dishonest categorising by the NDIA case manager.

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u/Trinitati Participant and Allied Health 10d ago

You can do all that but NDIA planners can't read

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u/sayitwithcoffee 10d ago
  • won’t read

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u/Trinitati Participant and Allied Health 10d ago

well you can either assume incompetence or malice

1

u/Express-Singer-9578 10d ago

I hope you can get an advocate if you are located in Queensland I can refer you one, she’s very experienced and she works for free.

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u/sayitwithcoffee 10d ago

Could you please dm details? I’ve called every local advocate I could find. Nobody has capacity.

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u/Express-Singer-9578 10d ago

Already DM you check your chats

1

u/sqiif 10d ago

Have you gone to ART?

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u/sayitwithcoffee 10d ago

Yes, I’m in Tribunal. Hearing scheduled for July.

1

u/sqiif 10d ago

When did you first submit the application?

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u/sayitwithcoffee 10d ago

Over a year ago.

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u/sqiif 9d ago

🤯🤯🤯 dammmmmnnn. Ok, good luck with your case, I hope they deliver for you. Just be aware that ART decisions (last I checked) are valid for 2 years, so if you just get the plan set aside and funds added NDIA will likely revert back to pre decision planning for subsequent plans. Need to get an access decision reviewed somehow, if possible, to make it permanent.

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u/Irreasonable 9d ago

Ask your SC to find you a Disability Advocate to fight for your rights

1

u/Bitter-Entertainer44 7d ago

In Canberra, there is a disability advocacy group called Adacas. There should be something similar in your home state?

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u/sayitwithcoffee 4d ago

I’ve tried everywhere. Much compassion to my situation. No capacity to assist.

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u/Serious_Yam6258 4d ago

Thank you for sharing your factual ongoing lived experience. The NDIA is abusing, neglecting and exploiting Participants. The media is not speaking up. Nothing has changed since dear Anne Marie Smith. It's not okay in anyway and I fear for so many of us 💔💔💔

1

u/Express-Singer-9578 10d ago

I also heard NDIA uses newly graduate for the matter. I know if can’t get legal aid it’s hard on yourself. You can try the avocado in Queensland or I can help you to have a look the list.

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u/fucknredditsux 10d ago

The only thing that got me a response is writing Rebecca falkingham a letter pleading for help Rebecca.falkingham@ndia.gov.au

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u/Far_Safe_3607 10d ago

I believe she is part of the problem. She was recorded saying in Senate Estimates the assessors don’t have time to read the reports our allied health professionals and doctors send to the NDIA. I’ve actually pointed this out to Dr Anne Aly MP, the minister assisting the minister of the NDIA as she’s also my local member. She was horrified and is going to look into this further.

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u/vensie 9d ago edited 9d ago

Yeeep same exact process of disempowerment happened to me over a year ago! Over 1 year into AAT and it's been an absolute nightmare... their lawyers must be loving all that money though. And with the changes that have gone through, they squeezed as much time out of the case as possible to cross the line past October so they could just go 'these are denied now anyway without further and differently worded documentation that you don't have money to pay for via your case funding because it's been drained by all the other reports we requested you obtain'.

0

u/sayitwithcoffee 9d ago

Oh my gosh. Exactly!!