24th September 2022

Personal Submission to the Inquiry into the Capability and Culture of the NDIA

My name is redacted, I have Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and this year I applied for access to the NDIA. ME/CFS is a complex neurological illness and not the same as having general chronic fatigue.

I have recently had my first access request rejected by the NDIA and am drawing on that experience to highlight some of the issues relevant to this inquiry. These issues have made my first access request an unnecessarily lengthy, onerous, and quite frankly emotionally unbearable process, which is doubly significant given that I am a disabled person in need of support.

Term of reference: Capability - the capability and culture of the National Disability Insurance Agency (NDIA), with reference to operational processes and procedures, and nature of staff employment.

Repeated (incorrect) advice across NDIA that a psychologist or psychiatrist is a relevant professional in the context of treating my disability (ME)

I contacted my Local Area Coordinator for assistance with applying as I have a cognitive impairment and was struggling with the paperwork, to be informed:
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            “I did some research in Chronic Fatigue Syndrome and found that one of the specialists 
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to treat it is psychologist. Therefore, I would strongly encourage you to obtain a Psychology report to show the agency how your disability have permanently impacts on your daily functional capacity.” (NB: this is a direct copy and paste, the spelling/grammatical errors were included).

These words (identically written but I believe without the grammatical errors) were also written to me later by the NDIS assessor who rejected my access request.
This indicates that guidelines within the NDIA on ME/CFS are wrong - a psychologist is not the relevant professional to treat the impairments caused by ME and is certainly not going to be able to provide an insight on loss of functional impairment in regard to the physical disability side of ME.
The impact of these errors is that I did not pursue getting help from the LAC, not only for this error in information but also because they didn’t outline how they could be of assistance (for example, can they assist me in filling out your access request form because I have a cognitive impairment? I don’t know as they never advised me).
Not having help with filling out paperwork is one of the main reasons why a year after I’ve started learning about the NDIS, I, as someone with cognitive impairment,

still hasn’t been able to put together a successful application in the extremely

specific language that the NDIA requires.

Not providing detailed reasons for rejection in access request process.

The NDIA assessors do not have to provide any details or evidence to substantiate their decision to reject access requests. For example (as in my case), I was rejected on the grounds of ‘permanency’ for ‘not having tried all available treatments’ in the context of an illness that doesn’t have any effective treatments available to it. I had no way of knowing what treatment(s), for which impairment(s) they expected me to have completed to gain access, or really whether they have any sound foundation for the rejection at all.
I asked the assessor for particulars about my decision so that so that I might address it at the review stage. In their first correspondence, the assessor merely said that I could request a review and restated what was in the original ‘access not met’ template email. This response to requests for further information is common NDIA practice.
This practice wastes both the agencies and applicants’ resources and time. It also means that an applicant doesn’t have the information required to improve their evidence/application when applying for a review, potentially leading to another ‘access not met’ decision.
This is neither a fair nor transparent process.

NDIS assessor belief that they can override a medical practitioner’s opinion of what treatments are safe/suitable for the applicant.

After sending a second email to the assessor to try and obtain specific information about my rejection (and therefore improve my evidence for a review), I was informed that there was:

          "Identified potential for me to benefit from further therapy interventions, (i.e.,
          further psychosocial therapy, psychiatric and neuro-rehabilitative support and
         physiotherapy)."

My medical practitioner had already addressed that psychological and physiotherapy based treatments were either going to be inappropriate or ineffective in my case, and psychiatric and neuro-rehabilitative support are completely irrelevant to my condition.

This indicates that the assessor was ‘guessing’ at ways to deny my access request (based on no guidelines or foundation) and that he had also rejected the detailed medical opinion provided to him and presumed to know better.
How is this lack of process and reasoning even possible from a government agency?
A second reason for denying my request was given, however for the sake of brevity I will only say that it was a conclusion that was not open to him to draw from the evidence my doctor had submitted, and in fact completely contravened explicit statements from my doctor that confirmed my illness was stable/didn’t fluctuate.

Based on constant reports from within my disability community and my own experience, assessors are untrained to deal with complex / health-based disability access requests and are inclined to outright reject them.

My access request was initially rejected because the two criteria (permanency and substantially reduced functional capacity) were not met. It is considered the norm, and in fact anticipated, to be rejected from the NDIA when you have my illness - and this is despite the ME community putting in significant effort to educate themselves about the complexities of applying for the NDIS when you have a health-based disability.
Ultimately, after two emails to the first assessor (trying to get further details) and then two complaint emails being sent, the Technical Advisory Board within the NDIA advised that I had in fact met the ‘Permanency’ criteria.
It took seven weeks from my initial ‘access not met’ decision for me to achieve this outcome, which is a correction on one criteria of the original assessor’s decision - indicating that assessors make errors/don’t take the initiative to get the right advice from TAB when reviewing access requests based on health-based disability and automatically reject them (with the pretty atrocious internal reasoning aforementioned).
If I had not filed two complaints, at the informal advice of a lawyer, then who knows when or if this incorrect finding as to the permanency of my condition would have been corrected. It may have been corrected at the review stage, or it may not have unless I’d filed these complaints. Not having a ‘permanent’ illness is one of the most challenging things to establish to the NDIA when you have ME/CFS and one of the primary reasons for rejection - so it seems that I got ‘lucky’ in this regard, whereas many others within my illness community wind up at the Administrative Appeals Tribunal trying to establish this criterion. The lack of consistency is concerning.
It also wasn’t until the ‘review’ stage that I was finally informed that I needed to supply more information, and from whom (specifically an allied health professional, not a psychologist after all). This was the first time I was informed that I needed

allied health input, and I’m not sure why this couldn’t have been stated at any time sooner in the process (or from the LAC I first contacted). Because ME/CFS falls under ‘other’ conditions on the ‘providing evidence of your disability’ NDIA webpage, this information was not clear to me at the outset.
The impact of this was to draw out the process significantly and delay my entire review – as I could have placed myself on occupational therapy waiting lists sooner had I known this was needed.
There is also confusion within the NDIA as to whether input from an allied health professional is necessary for an access request for those with ME. I initially applied without allied health input, as I know people with my condition who have been accepted without it. The reviewer insisted that allied health input was essential, and that certain information could not be provided by my GP, and if I had had known that this was a must-have from the outset – I would have worked to include this in my original access request.

A culture and processes that deny health-based disability as true disability

The NDIS is not set up to accept applications from people who experience disability because of health-based conditions like mine. This is the first thing that advocacy bodies for disabling illnesses will say when they are presenting a seminar on how to apply to the NDIS.
I have read (and re-read) at least 200 documents related to applying for the NDIS and I’m still in the process of preparing for my second access request.
The burden of translating a health-based disability into the ‘black and white’ view of disability that an NDIS assessor understands is unbearably burdensome to the applicant and a barrier to access.
If I had not received the advice of people with my illness who have previously navigated NDIS access, and especially how to translate my entire illness into ‘disability language’ that the NDIS finds acceptable, then I genuinely believe that I would have zero chance of getting onto the NDIS - given that despite all this education and information I was still rejected at the outset, and that I still failed to establish one final criterion at the review stage.
I commonly see in ME support groups that people want or need to apply for the NDIS, but they ‘don’t have it in them’, ‘don’t have the energy/capacity’ or can’t bear to reapply after failing to gain access the first time.

Assessors look for reasons to deny your access request, not to accept it.

My occupational therapy report prescribed complex assistive technology for me, including a power chair. At present, I don’t have a power chair because you need extensive occupational therapy advice prior to purchasing one and I figured that I may as well wait until I am on the actual NDIS (because I would also need a hoist for the car, house modifications, training in how to safely operate one etc).
I presently use a rollator (wheeled walker) around the house, but even such can barely walk with that, and only for very short distances (as stated in my OT report).
The fact that I did not currently have, or use, ‘prescribed’ technology was used against me, with the NDIA saying that a rollator (as well as other assistive technology such as a shower stool) was considered a ‘common household item’ and using a rollator didn’t show that I had substantially reduced functional capacity. For context, I am thirty-one years old.
It seems almost a ‘trick’ that the NDIA will play – insisting that you provide ‘detailed information as to how you get through a day’ and then for the many of us who don’t have adequate equipment or disability support, or who have dared confess the adjustments that we have made to our lives in order to meet (or still not meet) our most basic daily needs – this information serves only as fuel for the assessor to reject you.
This is unduly cruel to many disabled people who already experience neglect from within the medical system and society. They essentially experience that same level of disbelief and scepticism from the very scheme that is supposed to support them.

The impact of this

creates confusion and further mental work for the applicant and adds to the burden of applying, even more so for those with cognitive impairments. It is also stressful, because for example, if | receive a blank email —| will wonder, was it supposed to contain something important? Or if the assessor thought that my report wasn’t dated, did he discount it — or give it less weight?

8. The process of “attempting to contact people” by telephone

In my access request rejection letter, the assessor stated: “| attempted to contact you to discuss this decision, but | was unable to reach you.”

My application letter clearly states that I’m not able to use the telephone and that | request my correspondence in writing. This was ignored. Does this mean | missed out on receiving detailed information regarding the decision? | will never know.

According to members in the ME community the NDIA routinely does this. Clearly unacceptable from a government body that deals specifically with disabled people.

Difficulties applying for NDIA access with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome