Capability & Culture of the NDIA Inquiry
Supplementary Statement to Submission 86
Ms Catherine Walker
Background
I had hoped to provide the Committee with a positive update, but after my own issues were resolved (turns out that was predictably short-lived!) – and after receiving a written apology and having the opportunity to discuss some of these issues at length with senior staff – it rapidly became clear that this was just a way to make me pipe down, and that none of my feedback would change a thing. At this point, I think Yoda captures it perfectly:
Image Description: Screenshot from The Empire Strikes Back shows Yoda in a swamp, head bowed and ears downturned as he admonishes Luke Skywalker (offscreen):
“Always with you what cannot be done… Hear you nothing that I say?”
There were more reports of Ehlers-Danlos Syndrome rejections for the same and other nonsensical reasons. And then my loved one was granted access.
Dear Chair and Committee, I’m afraid we still have a LOT to talk about. I’ve summarised what I had time to in this statement, but invite you to chew over the attached email evidence, and to publish these redacted, as a taster of the Capability and Culture we are dealing with on a daily basis. Do these communications make you frustrated? Distressed? Angry? Yeah. Me too.
In my original submission, I said, “Unfortunately for the agency, this particular autistic has a special interest in research.” That means that, despite my communication difficulties, I have AQF Level 9 training in critically analysing bull****. Since nothing actually changed based on my Geelong testimony, I’ve extended those skills to interrogate various assertions by the NDIA and its employees.
19th April: As this is ongoing, a great deal of this remains in my attached responses to the agency, which has now wasted approaching a year of my life, and prevented me from completing this submission to my satisfaction. If any of this makes you feel the way I do, please call me as a formal witness. I’m done settling for anything less than the NDIS we were promised in the Act itself.
Supplementary Submission to Submission 86
Ms Catherine Walker
Page 2 of 14
Before we get to multiple disabilities, we need to talk about “Streaming”
According to the McKinsey Report1, “Streaming” is defined as follows:
"During the pre-planning phase participants are segmented based on 'streaming factors' that are
designed around workflow, to help the NDIA understand the amount of time required to keep a participant engaged in the participant pathway. These factors include behaviours of concern, involvement in multiple service systems (e.g. the justice system or Child Protection), and the level of informal supports. Participants are streamed into four categories – General, Supported, Intensive, and Super Intensive, with the greater the intensity the more time/effort required to be spent on participant.“
I only touched on streaming briefly in my first submission (see Recommendation 4 of Submission 86), but it had a significant impact in creating additional barriers for me not only with planning, but in getting past the stonewalling of the EDS issue.
The agency continues to defend the lack of transparency over streaming as an internal process. Participants are not meant to know about it, despite the previous CEO including a highly redacted version in a DRC submission and various released documents referring to its role in agency workflow planning.
I maintain that the agency has no right to hide behind deflections or “Certain operations of agencies” covers for internal administrative processes which directly affect participants, especially a process with such a huge impact2 as streaming.
This time, I’m including my 28th October complaint to the Freedom of Information branch from just before I testified to the Geelong hearing and addressed streaming in Recommendation 4 of my written submission, in which I address the public interest argument at length.
From a process and nature of employment perspective, streaming is a convenience measure for the agency, but one which has the impact of being anything from a huge inconvenience to a dangerous retraumatisation for vulnerable participants when they are denied sufficient time, accommodations, support or trauma-informed care. That’s a particularly huge problem with LAC partners, especially those that treat participants as time-restricted KPIs.
The issues I raised in Recommendation 4, and in detail in the attached 28th October complaint, predicted exactly the retraumatisation my loved one experienced when their openly disclosed streaming factors were overlooked and they were inappropriately assigned to LAC partners rather than an experienced and trauma-informed agency planner as requested.
1 https://www.ndis.gov.au/media/359/download
2 While not the focus of this statement, I trust the Committee is also aware of the impact of vulnerability indicator failures examined repeatedly throughout the Robodebt Royal Commission, because many of these factors are also relevant to other NDIA activities, such as Compliance. This is a matter I already raised concerns about as having Robodebt 2.0 potential in regard to multiple impairments in my original submission and testimony to the Geelong hearing, reinforced by the earlier testimony of Naomi Anderson, Principal Solicitor for Villamanta Disability Rights Legal Services. Given the Robodebt revelations since, I ask the committee to consider the implications of the difficulties I relate in having streaming factors captured accurately here — and the complete lack of transparency or accountability about what is recorded — in the context of potential Compliance disputes such as the multiple disability issue.
Supplementary Submission to Submission 86 (Ms Catherine Walker)
Page 3 of 14
In my original submission, I stated the following about my access assessor’s lack of care, diligence, honesty and integrity, regarding their dismissal of both Ehlers-Danlos Syndrome and my husband’s clearly defined role as a carer:
“I uploaded a new letter from my doctor on the 7th of October, the day after finally hearing from
the access assessor (whose justifications do not appear on the internal access decision records
received under FOI, only a one-line dismissal which doesn't even name EDS)...
My husband has been carrying an even heavier load when the burden on him was a significant
reason for applying; yet, I recently discovered through FOI that the access assessor ticked the
does-not-have-a-carer box despite claiming to read his Carer Impact Statement... To agency
staff who treat us as numbers, KPIs and preconceived profiles of diagnoses: How dare you.
To paraphrase the new NDIA chair: EVERY role in the NDIA is the most important role, because
of the huge impact your work — sometimes, just minutes of it — has on our lives.
The records I have show the access assessor seemingly considered 132 pages of compiled
evidence and dismissed everything except the automatic autism approval, just 23 minutes into
their workday.”
What I didn’t have time to address further, and what also hadn’t yet been resolved, was the fact the access assessor also streamed me to General – the lowest of four levels of support for the actual pre- planning process – stating that “No streaming factors apply.”
As I said in the attached complaint and request for corrections sent to the FOI branch on 28th October:
“This is also false, unless these factors have completely changed. My communication difficulties
are noted on the ARF, in my actual ASD diagnosis (Level 2, by definition, means "substantial"
support required“ in the domain of communication, and I’ve requested the kind of “substantial” support I need repeatedly since), and critically, in the clinical psychologist report and recommendations, including her recommendations for extra support during the planning process:
“A range of difficulties in conversation were identified... Cat at times prepares social
scripts for what to say when making phone calls as she finds it difficult to just be flexible
and adapt what she says to the other person and then respond appropriately.
Cat has challenges integrating verbal and nonverbal information at times during
conversations... There is a staccato, halting, quality to her speech at times and some
slowness in self-expression; the sense from Cat is that it's very important for her to get
things right and at times she struggles to find the right words. She has a strong desire to
be correctly understood... Cat does have a preference to communicate through text and
written word for clarity of expression and it's much hard [sic] for her to communicate in
phone calls or spontaneous conversation.”
And:
“The current situation is untenable given that her husband is her full time Carer but he
also has to work and the demands on him are not sustainable in the longer term. Also,
Cat is highly desirous of wanting to be able to support herself in her home environment.
In order to do this, given her complex medical [subsequently diagnosed as the incurable,
congenital connective tissue disorder which is the subject of the complaint in this FOI]
and mental health support needs [relating to Autism], Cat will require considerable
expertise from the NDIS to devise a highly tailored intervention plan and range of in-
house supports to assist her."
Supplementary Submission to Submission 86 (Ms Catherine Walker)
Page 4 of 14
Additionally, the fact my husband has been “doing the job of the NDIS” for years (while working a high-pressure job, just mostly from home in COVID years) is in my own statement, as is the fact I have no community support in such a tiny, isolated regional town and no other family support nearby.
So is the fact I have needed an advocate (e.g. in medical situations, which presents similar challenges to planning situations).“ The quoted section is specifically what was in front of the access assessor when they falsely recorded that no streaming factors applied to me. It begs the question: What is standard operating procedure for recording these factors if they are being ignored so often? Or is it intentional to treat streaming and access to agency planners as a finite resource one must fight for, because the agency cannot meet the demand with the current workforce if all participants had the opportunity to verify that all applicable streaming factors had been recorded?
After raising all this approximately nine times AFTER becoming aware of the streaming process and a leaked older version of the streaming factors (but not knowing how many requests were actually processed), I was finally restreamed to Intensive (the second highest level) following a detailed conversation with a senior NARB/NAT individual. She had pencilled me in as Supported based on the months of emails she had reviewed, and by the end of our conversation, agreed that Intensive was most appropriate.
I hoped I was genuinely being heard and that NARB/NAT would implement my feedback, including getting it right the first time and the issues I noted in my complaint and Recommendation 4, and also around some equivalent factors that are not on the current list. We spoke for well over an hour, which was only possible because I’d already said everything so many times I’d effectively memorised the script.
I subsequently received further confirmation of restreaming to Intensive and Ehlers-Danlos Syndrome being on my file from an Executive Complaints representative, also with this acknowledgement:
“I wish to apologise for any inconsistencies in our handling of your documents which led to you initially being streamed "General". Thank you for your patience at this time and we do apologise this process caused you and your family frustrations.”
I daresay “frustrations” is quite the understatement, but I appreciated this concession and was still hopeful the underlying issues would be addressed.
But absolutely nothing changed.
Once again, this falls on the lack of care and diligence that seems to be standing operating procedure within the National Access Team, even if it’s the subsequent LAC contact (and stonewalling from Complaints and Internal Reviews) that triggers the harm. However, the agency Operations teams are just as complicit in the way they never question bad decisions by the NAT when it comes to them for review; if anything, it seems like they double down.
To every delegate in the NDIA, I say: Would it kill you to listen to participants, whether you’re the first to see the evidence or the fourth person not questioning the first decision? Or are you too focused on your KPIs and rigid SOPs to care if you drive us to suicidal ideation? Why did you even join the NDIA?
When my loved one applied for access, I suggested they include their PTSD diagnosis in the email to highlight their need for a high level of trauma-informed AND autism-appropriate support and accommodations, and also direct the assessor’s attention to specific support needs noted by their doctor under the domain of Self Management on the Access Request Form. I didn’t suggest this to cherry pick
Supplementary Submission to Submission 86 (Ms Catherine Walker)
Page 5 of 14
Streaming factors and gain them any unfair advantage, but to try and protect them from the consequences of these factors being overlooked if they were not explicitly disclosed and highlighted. This is what was included in the body of their access request email to NAT@ndis.gov.au:
“Please note that I will need an advocate and extra time for my planning meeting with the support
of an experienced NDIA planner, due to the combined impact of autism difficulties and clinically
diagnosed PTSD which has already been triggered by (and delayed) the application process.
See treating professional notes under "self management" support recommendations on page 20
of the ARF.”
This is the specific comment their doctor had already made that should have immediately prompted streaming to Intensive (and thus, an agency planner) even without the cPTSD disclosure:
“Needs assistance arranging appts, interacting with 3rd parties of government departments,
etc.”
While I appreciate there may be some decent LACs out there, the very nature of dealing with an intermediary can be an additional barrier for autistic people, let alone autistic people with co-occurring complex PTSD, and the above difficulty with engagement also makes it essential to deal directly with the decision-maker.
I could grant a tiny bit of slack about the original streaming decision in my case, if not the repeated restreaming denials, because my factors were not front and centre even though the access assessor should have noted them if they had read my documentation properly.
But I cannot forgive the agency for dismissing such explicitly obvious and serious vulnerabilities disclosed upfront when it comes to my loved one; especially when I had predicted this exact scenario before my own streaming was even resolved, and reiterated this risk to participants to the senior employee who restreamed me. I will not forgive them until they fix this process and make it transparent, exactly as I recommended to the Committee and agency last year, because few people in my loved one’s position have someone who has already been through this on their side to hold the agency accountable.
My loved one is a genius. They are a wonderful, fierce parent. They fought for their own life and their child’s when the medical system nearly killed them both, and through years of gaslighting while two of three congenital disabilities were undiagnosed. These impacts resulted in their diagnosis of complex PTSD, even if autism predisposed them to this trauma in the context of systemic ableism.
Their neurodivergence is both a significant disability, and their greatest strength. They are the person I go to for new insights in the spaces our autistic special interests collide. They are passionate about inclusion and unafraid to call out discrimination of any kind.
They also need significantly more support and understanding than was offered to engage with the NDIS system without further trauma and psychological harm, and this has been further compounded by such a negative introduction. It took over 70 days just to resolve the streaming issue; even with my help and repeated pleadings for the agency to understand the harm they were causing my loved one when I knew a mistake had been made.
If my justifications for factors requiring Intensive support were agreed upon by one of the most senior individuals reviewing these decisions, I can tell you without doubt that my loved one should have been streamed Intensive at the bare minimum, from Day One — even if our factors differed slightly — and potentially Super Intensive for their initial plans, whether or not this linked them to the Complex team. That may yet happen after their planning meeting and a closer look at their situation, but, honestly:
Why couldn’t all of this just be straightforward and without further trauma?!
It also wouldn’t matter if they originally conceded my loved one should be Supported rather than General, because under no circumstances should the NAT ever have delegated their support needs to an LAC partner. They set both my loved one and the LAC up to fail, and my loved one has worn the consequences. By the time I was communicating with the agency on their behalf, they already felt like a victim of the NDIS, not a participant.
The LAC demanded they re-disclose the streaming factors already pointed out, to justify their restreaming request to the NDIA.
I’m ashamed to say I had exactly the same autistic reaction as my loved one: To comply under duress and help them over-explain, when they had every right to tell them where to shove it in the face of such absence of trauma-informed support.
The more I thought about it while we waited to hear the outcome, the more I felt I had let them down. Sure, the LAC had conceded there were factors and submitted the request, but this is exactly the kind of retraumatisation I predicted in my complaint to FOI last year about the lack of transparency over streaming.
Unbelievably, this was rejected, as was a repeat request submitted by the LAC’s manager.
By this time, I had been granted consent to communicate because my loved one didn’t feel safe engaging with the LAC who had seemingly ghosted them, and couldn’t deal with the unbelievable lack of care and diligence of the NCC when we were trying to process the third party consent and get reference numbers and updates for the streaming requests.
That led to the first formal complaint through Minister Shorten, forwarding the chain of NCC errors with it. This finally prompted an email from the LAC anyway with the rejection news. Once we had the reference numbers and outcomes, I advised the agency my loved one wanted no further contact from the individual or their organisation, and updated my request for formal explanation of the initial and two subsequent streaming decisions with the reference numbers.
This led to the email from an agency planning Team Leader via a No-Reply address, and my incredulous response (both attached). That response was initially intended to go directly to that individual. When I realised I had no way to reply directly, I added the notes in square brackets and sent it to the CEO’s office instead, because we were not only being told we weren’t owed any explanation for a non-reviewable decision, but that my loved one should proceed with a meeting with the LAC and discuss their trauma AGAIN.
For an excellent example of both questionable agency processes versus the NDIS Act and impact of agency processes on the participant experience, please examine my full response sent on Saturday 18th March.
We received a response from the individual discussed further in “Current communications” on Monday 20th March, confirming that my loved one had been assigned to the Intensive pathway.
20th April: I’ve just seen the new Participant Safeguarding Policy published today. I’m curious how all this was such a battle when so many of these issues are touched on in the policy. My loved one and I would very much like to know how feedback we have already provided will be used in any refinements relating to the factors we have raised and those from Recommendation 4, particularly in relation to autistic adults.
Ehlers-Danlos Syndrome (EDS) versus Section 24
The Committee knows exactly where I stand on this matter. I’m still waiting for a response sought from the Technical Advisory Branch on my behalf as to whether any changes have been made. I’m also still waiting for more detail requested on the statistics released in the FOI document attached, as this could not identify which part of s24 was deemed unmet.
21st April update: I’ve just had confirmation that an Information Commissioner Review will be commenced.
But on that document alone, the vast majority of rejected requests were from existing participants:
Of the 175 access requests listing Ehlers Danlos Syndrome that were rejected as at October
2022 when the disability criteria are not met, 164 of these were from participants attempting
to add or update their list of disabilities but were rejected since February 2021. We inspected these 164 rejected access requests and checked when Ehlers Danlos Syndrome was listed, during the period between June 2021 and October 2022 subject to data availability. During this period, 122 listed Ehlers Danlos Syndrome as the primary or non-primary disability to add to their existing list of disabilities but resulted in an ‘access not met’ based on section 24.
One wonders whether 164 is enough for a class action.
Permanence was never challenged for my loved one on EDS, but I don’t know if that’s just because we knew what had failed for me in getting past s24(1)(b), or whether the agency has moved to other strategies.
I was already suspecting as much after seeing two other existing participants battle to have EDS added, both seemingly accepted on permanence, but denied in an attempt to handball any impacts of pain back to the health system under s24(1)(e), and, seemingly, refusing to consider the collective impact of impairments under s24(1)(c). One of these examples is now pursuing external review. The other feels too utterly defeated to pursue AAT even after an offer of legal aid with experience in this area before the deadline passed. There are more. Suicidal ideation is very common:
Supplementary Submission to Submission 86 (Ms Catherine Walker)
Page 8 of 14
And I really want them to know the suicidal ideation we mostly see in our community is not because of “emotion” or some dramatic cry for help. We see it as literally the only solution left for us. Society currently loves pumping out the “if you need help, just ask” message but in our community, we have been asking/begging/pleading/working tirelessly to get help ….. and it doesn’t come.”
(Quote included with permission.)
Tell me, Committee: How does defeating us before we get to external review stack up against the Model Litigant Obligations?
I have consent to identify this individual to the Committee and NDIA only if the agency agrees to respond by addressing the underlying issue of recognising the collective impact of impairments already deemed permanent rather than further victimising them with a completely inappropriate and traumatising mental health response that fails to address the real problem or take responsibility for the NDIA’s role in compounding their distress.
As for the whole matter of pain and its relevance to Section 24: That is NOT what the Federal Court says. But one guess where Loved One and I are stuck now…
The agency’s legally questionable treatment of multiple disabilities, s24(1)(c), and that whole “Primary Disability” fiction…
What frustrates me so much about this issue is that it is so intuitively obvious, it’s in the Operational Guidelines for the “substantial functional impact” access criteria. The agency is breaking their own rules on this!
“If you have more than one impairment, we will consider them together, to see if they substantially reduce your functional capacity.”
My disability is not a bunch of different impairment buckets. It’s not even an impairment layer cake meeting a certain threshold in at least one mutually affected domain. It’s a disability soup, simmered to create interactions between different impairment ingredients, served up into several different bowls with different amounts in each, but at least one hitting a certain threshold, and seasoned with extra social barriers, systemic ableism, and manifestations unique to my life and context.
It doesn’t matter if the “standalone” impact of some impairments is minor compared to others to the external observer, or if they are weighted more equally: They are inseparable to me. And if one of those impairments has already met the “substantial functional impact threshold” in a particular soup bowl, or functional domain, the other impairments don’t need to fill a soup bowl of their own: If they have any impact whatsoever on a particular domain, and that soup bowl has already reached the line… it’s just topping up the same bowl. It might only be a few drops that appear to add little volume, but if those drops completely change the flavour… Can you really say it’s the same soup? No. The disability soup is fundamentally changed by the interaction of all the ingredients, and if a few drops change the flavour, thent also changes the nature of the support needs.
How can the NDIA, or any practitioner, or AAT member, or Federal Court judge, possibly try to separate impairments when they are working with soup and not raw ingredients? And how can they deny the functional impact of the “secondary” impairments if they complicate the impact of the accepted impairment in the same domain?
Supplementary Submission to Submission 86 (Ms Catherine Walker)
Page 9 of 14
It’s just more soup, and it’s the soup supports need to be targeted at, not raw ingredients, or they’re just targeting assumptions and not individual needs.
When will NDIA statistics and Typical Support Packages reflect reality?!! I’m sorry, Minister Shorten, but it’s just more Robo-Planning until you fix this, and it absolutely exposes us to Robodebt 2.0 as participants.
As at 18th April 2023, I’ve just quoted this analogy in response to the agency’s rejection of Loved One’s secondaries (including EDS) under s24(1)(c).
I’ve challenged both this treatment of s24(1)(c) AND the dismissal of pain as relevant, just as I challenged the separation of impairments under this when EDS was finally added for me last year, under Early Intervention, in a way that I felt uncomfortable about and now know I should have pushed back on.
But it was a Branch Manager. Would you have kept challenging with such a huge power imbalance?
Well, this time it was an Assistant Director performing a further review of a planning Team Leader’s decision.
And this time I did, on my behalf AND Loved One’s, because they brought my EDS case into theirs to reject Loved One, while completely misrepresenting my doctor’s evidence and revealing the huge omission upon which I agreed to proceed to planning last year: My EDS recognition was NEVER safe.
See the full email in the attachments. I will add any updates if received by Friday.
Multiple disabilities, Autism and ADHD
I desperately wish I had time for this, because ADHD matters too and is erased from current statistics. I invite any specific questions, and welcome the opportunity to give further evidence on this.
Multiple disabilities and Autism “Typical Support Package” algorithms
My original submission touched on the problems with the Autism TSP and the assumptions it seems to be built on. I have an active FOI request just extended until May 1st seeking the assumptions underpinning the TSP for adults with a primary disability of Level 2 Autism.
I do not have time to elaborate, but I have further concerns after seeing how this affected my own plan in ridiculous ways with ableist, autistiphobic assumptions about what I do and don’t need.
And I also want the Committee and the Australian community to understand that, when you hear such a huge percentage of NDIS participants are in the “Autism” primary disability category, you should ask which co-occurring conditions are erased from that statistic and our funded supports.
The entire concept of “primary” disabilities is an NDIA fiction that appears nowhere in the legislation and compromises disability-related data for the entire Australian population, not just our supports. It isn’t necessarily a case of more funding, but funding in the wrong categories based on dodgy assumptions and secret algorithms.
Supplementary Submission to Submission 86 (Ms Catherine Walker)
Page 10 of 14
Don’t you dare build or continue using an automated planning package that has not had my direct involvement and feedback on the assumptions these packages make about my experience of the world and what I need to live an ordinary life, without entrenched ableism and autistiphobia.
I am happy to give further evidence on this topic and update the Committee if my FOI request is successful.
More evidence of recording false information as standard operating procedure (even when there’s an evidence trail!)
In my original submission, it was the access assessor. Well, I’ve got more.
I didn’t have time to add the examples, but they’re all through my personal documentation. There are a few examples I could share in oral testimony that are illustrative of the deceptive practices that are standard operating procedure among even experienced agency staff.
We need to have full access to our files, and the opportunity to correct and call out bulldust for exactly what it is. This is our LIVES.
Current communications with the NDIA, responses received or outstanding, and other relevant matters
[This section was completed before the update we received and my response on 18th April 2023. I maintain that has been the exception to the rule. In fact, it’s quite sad to see someone doing the right thing, engaging genuinely and working extremely hard to address our concerns, only for everyone else – including senior staff – to uphold the same culture and employ all the same go-to NDIA wear-down tactics and sharp practices, all focused on one goal: Saying no, and forcing us to accept it.
I have given the agency a chance to respond before submitting this on Friday 20th and will add any updates or lack thereof at the end of my Conclusion paragraph.]
Supplementary Submission to Submission 86 (Ms Catherine Walker)
Page 11 of 14
I will be providing feedback to the relevant teams regarding this situation, and I really hope [Loved One]’s planning meeting is a positive experience for all.
Prior to closing your complaint, could you please let me know if you have any further concerns regarding this matter and I will endeavour to address for you.”
Poor had no idea what she was asking, because the email that came to the attention of Ms Falkingham’s office did not include the whole messy background of my loved one’s case, let alone my own.
Grace and tact have never been my strong point, as demonstrated in my autism assessment, but had responded appropriately and in good faith when so many since July 2022 had not.
So, I tried my hardest to respond with grace: To demonstrate the systemic patterns, and invite the agency to address them. I told the responses to each issue would inform this submission, but emphasised that I wanted to provide positive feedback – if the agency could produce evidence of tangible changes or explicit commitments.
I filled in, backtracking through my own case to demonstrate the pattern and issues that had not been addressed, not only allowing my loved one to end up in the same position, but forcing me to jump back in to fight the same fights all over again just weeks after my own case was resolved.
I raised the other outstanding matter of my loved one’s secondary disabilities (which I had not questioned earing my loved one couldn’t cope with that AND the streaming issue simultaneously), and four systemic issues. These, and the agency’s responses to date, are attached.
Unsurprisingly, could not respond before the weekend and checked in to acknowledge receipt.
But I was stunned at the next bit:
“Your knowledge of the NDIS and the support you are providing [Loved One] and us all at the agency should be commended. Thank you.”
I didn’t know how to respond to that, after so long. While I appreciated someone acknowledging this, I hadn’t laid out all my intense effort to learn what I was dealing with for a pat on the back, but to say: None of this is okay. I never should have been put in this position. Change it.
Instead, I just said thank you and awaited the next response, advising when we would be seeing loved one’s treating professional to gather further evidence.
’ follow-up advised further responses were in progress for some aspects, and responded where she could, ending with the following:
“As I mentioned in my email last week Catherine, your knowledge of the NDIS and the commitment you have in providing feedback and suggestions to help us improve the lives of people with a disability is a credit to you.
Your contribution is very valuable to the NDIA and I wanted to provide some information regarding a couple of groups you may consider joining, to support the NDIA even further.”
This time, I really didn’t know how to engage with her feedback. The suggested groups were Participant First, and the Participant Engagement Panel. I’m already registered with Participant First, which provides token payments for participation time, but I keep missing out.
As for the Participant Engagement Panel, how many organisations must I engage with to be heard on the range of issues I’ve raised? Energy is a huge factor in my disability. I don’t have capacity to jump through endless extra hoops just to be heard, especially on overlapping topics that don’t fall under any one organisation’s priorities.
Why can’t the agency just act appropriately on direct feedback?
And why should the agency get to take my knowledge and free labour for granted when I’ve been unemployed due to disability for five years (and underemployed for even longer), and have had the better part of a year consumed by inescapable back-and-forth with the NDIA, not only delaying access to supports (the core bullying tactic I called out in my first statement, where access to support was contingent upon compliance with their unfair processes which would inevitably prejudice my plan, any appeals, and potentially, Compliance disputes), but forcing me to deploy professional-level research experience — at the expense of further functional decline — to do their jobs for them in the face of repeated APS Code of Conduct failures, without being paid a cent?!
As I said in my original submission:
“I resent every hour these unpaid literature reviews bleed from my limited capacity while
NDIA employees draw generous salaries to ignore scientific evidence and professional
recommendations, and I want to see systemic change for my efforts.”
That was your choice, you might say. But, Committee, they really didn’t give me one.
What the NDIA didn’t realise was that they were putting someone in this position whose only successful past advocacy was related to…wait for it… Wider recognition of and adequate support for invisible congenital disabilities, with complex, systemic impacts. It doesn’t matter if that was in horses. The horses’ stories mirrored my own.
But I didn’t set out to be a professional disability advocate or activist. I just wanted access to reasonable and necessary support without being asked to do the impossible and be selectively autistic, in a reasonable timeframe, with reasonable accommodations!
My HELP debt was indexed to the tune of $1560 just before I was granted access in July. It’s about to go up another $2909, or thereabouts. That will make almost $7K in indexation since I graduated, because I haven’t been able to work since. I only made it to the finish line out of sheer desperation to secure the piece of paper to show for this debt, increased by the Neurodivergence Tax of multiple course changes before finding the right path.
The NDIA is apparently benefiting from the scientific research skills I’ve been unable to profit from, and am sinking into further debt over because of my disabilities.
I’m not eligible for DSP because of the partner income test that renders me completely dependent on my husband, but if I’d been able to have a whole-person planning meeting in July with expert help to implement supports rapidly, and if I hadn’t needed to jump right back in to support my loved one after my case was resolved, I might have more to show for this year than an almost $3K increase in my student debt and some kind words about the expertise gained that the agency was apparently lacking in its salaried workforce, even at the APS6 level. One could argue I’m even teaching some of the executive staff if any of my more targeted feedback leads to policy changes on issues I’ve personally called out and pursued, that they sought to maintain.
So, truthfully, while I appreciated ’s kind intent, I just wanted to shoot back exactly what I sent to the Committee the night before drafting this section so could forward it to the big boss:
Supplementary Submission to Submission 86 (Ms Catherine Walker)
Page 13 of 14
1. “Then pay me for my intellectual labour! Hire me as a Subject Matter Expert/Lived Experience Consultant!”
2. I never should have had to become an expert!
3. That just makes me more scared I will be punished in some plausibly deniable way — like losing Specialist Support Coordination and Intensive streaming with access to an agency planner that I really do need, no matter how well I can write about it — for demonstrating expertise in daring to stand up to them on [Loved One]'s behalf, let alone if it goes beyond internal review!
Because all I could think was:
This is consuming my life. Why the hell aren't they paying me for my expertise? Why is the first person in the agency to acknowledge this when I've been quoting research and case law at them since July?!
When I say consuming my life, I mean: This has interfered hugely with my plan implementation even after resolving my case and relocating temporarily to an area with more services, with a drastic four-month underspend I fear will result in cuts to supports I absolutely need and have not had capacity to engage with because no one else knew how to help my loved one.
I mean: My husband’s recorded comments pre-Geelong hearing lifeline, that I later submitted to my planner (but which are suspiciously absent on my PIA records), included quotes like “I’ve watched you recede into yourself through this process… You’ve been pushed into this little box where your entire day is spent researching, reading and diving into the NDIS policies to the point where you’re more of an expert than they are… And it’s become your entire world, because they’ve made it that way” and “I want to know who to bring my grief to when they drive you off a cliff and you kill yourself.”
I mean: I thought it was finally over, and then we started back at Chapter 1 of exactly the same playbook with my loved one, which hasn’t just been intensely stressful or interfered with my own support, but has meant fighting the same fight without recovering from the last one and triggering all the same emotional dysregulation, with an added layer of frustration and despair knowing that absolutely nothing had changed as a result of my feedback — with only the small mercy of knowing what would happen next but not being able to avoid it — and that my efforts to stop it happening again, especially to someone with my loved one’s additional vulnerabilities, were for nothing. They’d just made me go away, or so they thought.
I mean: The NDIA takes more than it gives, making us pay far too high a price for the supports we receive.
As I said to , I’ve never actually been assessed for PTSD, but my own engagement with the NDIA had brought me far closer to that diagnostic threshold before my loved one even sent in their access request, inducing ongoing physical reactions to Outlook notifications, driving me to suicidal ideation, and making me almost as easily triggered as my loved one in current interactions with the agency.
I’ve just memorised most the scripts and sources I used to survive the first time.
We need to call the NDIA’s behaviour what it is: Coercive Control
My loved one and I have discussed this in private extensively. I’m out of time to elaborate on this incisively, but I would welcome the opportunity to do so as a witness. We sure as hell feel like victims, and we have enough lived experience to know the signs, even though we remain more vulnerable to it as autistic individuals.
Conclusion
As I said in my first submission and statement of goals and aspirations, I’m writing myself a new story.
To the Committee, the NDIS Minister, Ms Falkingham, and the entire NDIA — especially those of you who have been around long enough to see all this happening and do nothing to change it — I once again ask: Who do you want to be in my story, and that of every other participant?
You get to choose which role you will play, and the agency gets to decide whether we write it together, or tell it at the RoboNDIS Royal Commission.
So choose wisely, because this story will be written.