NDIS Joint Standing Committee
Submission by Catherine Walker
31st March 2024
About the Author
Cat Walker lives in rural South Australia with her husband, horses, and Kelpie. Her disability is a mix of Autism, ADHD, Ehlers Danlos Syndrome, and the ways they interact.
Cat is an experienced advocate for horses with invisible disabilities that mirror her own story. She brings this research background to systemic advocacy around the support needs of neurodivergent adults, invisible and multiple disabilities. Cat’s horse work taught her that evidence-based practice can be slow to catch up, and that lived experience evidence is important to recognise even when it is hard to measure.
As a newly appointed member of the NDIA’s Participant Reference Group, Cat hopes her autistic directness will be valued and met with equal directness by NDIA staff as we work together to make the NDIS better and protect it for those who will come after her.
That includes holding the NDIA accountable through channels such as this inquiry. Opinions within are her own and based on her lived experience, evidence cited, or knowledge developed from her experiences engaging with the NDIS ecosystem.
Introduction
The following Day in the Life might read like fiction, but it is entirely factual: I asked ChatGPT to narrate this little glimpse into my world based entirely on months of redacted correspondence, the emails sent to the CEO and Minister that day, and the transcripts of the contemporaneous voice memos I took to document the impacts on my welfare and safety when I made it back to the house, to avoid drowning the Committee in emails.
I edited the results for accuracy and cohesiveness, but how ChatGPT interpreted the themes and events along the way was guided by the Terms of Reference for this inquiry, the legislative framework, brief notes on where in the voice memo transcripts I was mumbling or on the verge of tears, and the insights it drew from the previous correspondence.
The rest of the submission is my own work and interpretation.
The fact ChatGPT’s version of events feels so ridiculously dramatic without embellishing the truth speaks directly to the Terms of Reference and the NDIA’s failure to understand or respond to the experience—and safeguarding needs—of rural participants like me.
Who needs to die for changes to be made, including those completely overlooked by the NDIS Review?
Catherine Walker Submission to Rural NDIS Inquiry i
Who in the NDIA will be held liable when somebody does?
Because this safeguarding responsibility falls on the NDIA’s shoulders, not the Commission’s.
I am still waiting for the CEO to acknowledge that she truly understands this. The only direct response I’ve ever received to the systemic question missed the point. I’ll happily revise this statement if the CEO responds to the follow-up reproduced in Responsiveness of all NDIA staff to Section 31(j).
Given that ‘responsiveness’ is a theme of interest for this inquiry, and the consistent attempts I have already made to address these systemic issues through my current individual struggles, I have included a few other email extracts where they are directly relevant to the Terms of Reference.
Said repetitive correspondence didn’t start at the highest levels. I had attempted to escalate my change of circumstances request multiple times, continually highlighting the risks.
I had been using the current assistive technology (AT) in question at our Victorian property, but also when visiting my horses while they were on agistment and us in temporary accommodation at my parents’ house while we sold our Victorian property and hunted for something we could make work within a manageable distance from Adelaide for my husband.
We finally signed a contract just before getting my change of circumstances request lodged.
I knew I would be at risk from Day One, particularly as we were moving in just as Fire Danger Period commenced, and extreme weather with it.
When the Minister’s National Press Club Address was announced, I delayed plans to move the horses in and bought a ticket. The night before the NDIS Review report was published, I made one last call from my accessible Canberra hotel room: My plan would be extended the next day, and a desktop review would conclude I was safe based on flexible Core funding.
That could not be more incorrect.
Imagine my shock when I ended up seated next to the (now former) NDIS Commissioner, and Deputy Commissioners. I was still reeling from skimming the report, unable to find my words, until they asked what I thought of the Review as everyone began to leave.
All three disagreed with my main feedback—how much more vulnerable compulsory registration or enrolment at any level would make me in a thin rural market—and tried to convince me why they knew better. But when I changed the subject and queried them on the kinds of rural safeguarding complaints they receive, they were puzzled.
When I explained what was actually putting me at risk, they sprang into potential-critical incident mode and gave me one Deputy’s personal email address to follow up. The most important parts of that email are quoted in the Key Themes, Legal and International Context section, and are the focus of this submission.
But first, I invite you to imagine yourself in my shoes and world, on one dangerously hot day, almost seven weeks after that chance meeting.
Catherine Walker Submission to Rural NDIS Inquiry ii
A Day in the Life of a Rural NDIS Participant
As dawn breaks over the hills, Cat, a rural NDIS participant with multiple invisible disabilities, begins her day under the harsh Australian sun. The land is dry and the air, a furnace; the mercury is set to tip 40°C. Cat’s daily life is interwoven with the care of her horses, the stewardship of the land, and a fierce independence that rural living demands.
But today, like many days, is shadowed by an undercurrent of risk; a risk brought into sharp relief by the limitations of her current assistive technology, a twenty-year-old quad bike that poses the greatest lethal threat when she most needs it.
The months of communications to the NDIA had been clear and urgent: she is at much higher risk using the quad bike than someone without her disabilities, and the Side-by-Side Vehicle (SSV) recommended as the most appropriate rural mobility aid for her needs remained a plea unanswered, even after comprehensive occupational therapist assessment.
Traditional aids like rugged power wheelchairs were simply not equipped to safely handle the demands of her property, or address “all aspects of mobility” for Cat as outlined in Article 20 of the UNCRPD. Like the quad bike, they could not offer immediate sanctuary and self-care, vital for someone whose disabilities are exacerbated by weather extremes, exertion intolerance, and difficulties recognising physical needs. The SSV stood as the only genuine solution that could offer the independence and safety she desperately sought.
With no news on the AT request or the long-delayed plan reassessment, Cat reached out to the CEO of the NDIS that very morning, copying the email to the NDIS Minister’s office. Her email was not just routine correspondence, but a direct plea from a participant whose life hung in a precarious balance between autonomy and safety, an effort to cut through the red tape that had so far dismissed her legitimate concerns.
As the sun climbs, so does the danger. Today, Cat is also alone, because she could not in good conscience schedule a support shift when their long drive to the property through steep bushland could be just as lethal if a fire started.
Exactly as she had predicted in her email to the CEO that morning, Cat watches a grassfire break out nearby, a smoky haze against the blue sky. Though distant, the threat looms large, and the emergency app is slow to update. Alone, she heads out on the quad bike to monitor the situation in real-time, up on the ridge a short distance from her house. As the fleet of waterbombing aircraft descends, she updates the CEO and Minister with photographs, urging them to understand the reality of her daily life.
“Where are my safeguards?” she asks.
Sitting in the full sun, the quad bike becomes a bitter reminder of the countless emails sent, calls made, and the exhaustive expert advice provided in the hopes of securing the assistive technology which would give her both independence and safety in her home environment. Each attempt to convey the severity of her predicament seemingly dissolved into the black hole of bureaucracy, leaving her to face the harsh Australian climate without any of the safeguards the intersection of her disabilities and environment demand.
By the time the waterbombers appear to have the fire under control, Cat realises she has been exposed to the baking sun far longer than intended.
Catherine Walker Submission to Rural NDIS Inquiry iii
Retreating indoors, Cat confronts the aftermath of her exposure. Despite her best efforts to transition indoors to rest, as seemingly expected by the NDIA, her basic safety needs go unmet; even indoors, the impacts of her time outside are unrelenting.
For hours, Cat grapples with the heat’s consequences.
Her vision blurs; her thoughts tangle. Dehydration sets in, her core temperature rises, and cognitive disorientation takes hold, a stark reminder of her precarious situation. Profound exhaustion engulfs her. The simple act of getting water becomes a herculean task, one that she’s frustratingly unable to complete.
The voice memos recorded in these moments are a raw testament to the immediate physical and cognitive impacts of heat on a participant with disabilities and the urgent need for assistive technology that accounts for environmental conditions. In her own words, captured in the candid vulnerability of these recordings, the day’s events have hit her harder than expected.
A chilling realisation dawns: Her current state of compromise could be disastrous should another emergency arise.
It’s a situation that the clinically justified assistive technology—the SSV—equipped with a mister system, room to lay down in the shade, and stocked with essential disability-related supplies, could have mitigated by providing on-the-spot recovery, allowing her to maintain her vigilance without jeopardising her own safety.
As the day wears on, the lingering effects of the heat leave Cat incapacitated, illustrating the very real and immediate consequences of the NDIA’s inaction. Even in the relative safety of her home, she finds herself unable to administer medication, or to hydrate sufficiently.
Each minute back in the stifling heat is a minute closer to a crisis point. Sitting in the bathroom, the cool respite of the air-conditioned lounge room mere steps away seems as distant as the horizon itself; she is unable to move, too exhausted to address her basic needs. The agency that should be her safeguard in these moments is silent.
The eventual acknowledgment of her complaint by the Minister’s office brings no solace, only a further sense of abandonment by the systems put in place to protect her. There’s no check on her well-being, no swift action; just a bureaucratic echo in the vastness of her immediate needs.
This day in Cat’s life as a rural NDIS participant isn’t just another day; it’s a microcosm of the challenges faced by those the system is intended to support but designed not to capture or understand. It is a plea for the recognition that for some, the right support isn’t just about quality of life; it’s about life itself.
Catherine Walker Submission to Rural NDIS Inquiry iv
Table of Contents
Summary …………………………………………………………………………………………………………………… 1
List of Recommendations ………………………………………………………………………………………… 1
How will this submission address the Terms of Reference? ………………………………………… 3
What has changed since the inquiry into the Capability and Culture of the NDIA? …………. 3
What hasn’t changed? (Spoiler: Too much.) ………………………………………………………………. 5
Key Themes, Legal and International Context ……………………………………………………………….. 9
Defining Assistive Technology ………………………………………………………………………………….. 9
Core Theme: The biggest rural safeguarding gap is the one the NDIS Review completely failed to capture and that the NDIA refuses to own …………………………………………………….. 9
Section 31(j) versus Section 34 ………………………………………………………………………………. 11
Human Rights Context …………………………………………………………………………………………… 12
Safeguarding Participants from the NDIA: The NDIA needs to stop using one legislative obligation as an excuse while disregarding or outright breaching others ……………………… 12
So, what happened next? (Terms of Reference a, b, c, and e) ………………………………………. 13
Let’s Play Charades: The planning meeting …………………………………………………………….. 13
Implementation Meeting: Denial of supports, answers & duty of care …………………………. 14
The new Complaints policy: Fantasy versus Reality ………………………………………………….. 16
Fantasy 1: Person-centred risk assessment …………………………………………………………. 16
Fantasy 2: No wrong door & Fantasy 3: Communication ……………………………………….. 16
Responsiveness of all NDIA staff to Section 31(j) …………………………………………………….. 18
The NDIA’s approach to ‘consistency’ in serving rural, regional and remote participants is inconsistent with the NDIS Act and UNCRPD ……………………………………………………. 18
The NDIA doesn’t understand rural needs or the implications of s31(j) because the NDIA actively chooses not to. The CEO is enabling this. ……………………………………….. 19
The ongoing problem of multiple disabilities in the planning big picture ………………………. 20
Report Card: Effectiveness of the NDIA in serving rural, regional and remote participants ……………………………………………………………………………………………………………………………. 24
Rural participant choice and control over NDIS services and supports and relationship to obligations under Article 20 of the UNCRPD …………………………………………………….. 24
Unpacking what “all aspects of mobility” means for planning and safeguarding when multiple disabilities collide with rural environments ………………………………………………… 25
Availability and accessibility of NDIS services and supports, including safety impact of gaps in service availability ………………………………………………………………………………….. 25
Cost and durability of those services and supports ……………………………………………….. 26
Complaints handling and safeguarding experience of rural participants …………………… 26
Catherine Walker Submission to Rural NDIS Inquiry v
Impact of NDIA practice, policy and behaviour on rural participant safety, capacity building, social and economic participation and realisation of broader NDIS Act objectives …………………………………………………………………………………………………………. 27
Safety impact of NDIA reluctance to fund fit-for-purpose universal design technology for rural participants ……………………………………………………………………………………………….. 28
Final thoughts on (e) “any other related matters.” …………………………………………………………. 29
The NDIA is systemically breaching the NDIS Act and its legislated role in giving rise to Australia’s human rights obligations under the UNCRPD …………………………………………… 29
And so, once again, we come back to some of the more troubling themes addressed in my submissions to the Capability and Culture inquiry… …………………………………………….. 30
The NDIA is actively undermining my ability to pursue increased economic participation and genuine capacity building …………………………………………………………………………….. 30
The NDIA’s conduct, once again, is indistinguishable from coercive control …………….. 31
The epistemic exploitation never ends …………………………………………………………………. 33
If the worst should happen… ………………………………………………………………………………. 34
Catherine Walker Submission to Rural NDIS Inquiry vi
Summary
List of Recommendations
Recommendation: Participant-initiated risk escalation procedure
The NDIA should implement a participant-initiated escalation procedure akin to Ryan’s Rule, for situations of risk relating to NDIA administration, planning, or otherwise falling under NDIA responsibility and duty of care. This should include a dedicated independent complaint/risk investigation team reporting to the Office of the Participant Advocate.
Recommendation: Multiple disabilities
The NDIA should immediately cease the practice of assessing additional impairments against the access criteria in isolation when participants request secondary disabilities be added and implement Recommendation 1 of the JSC’s final Capability and Culture inquiry report to the maximum extent possible within current administrative processes without further delay. Further, that the NDIA immediately updates PACE to enable the National Contact Centre to record all claimed secondary disabilities or other health conditions with potential to increase a participant’s level of risk in daily life, regardless of assessment against the permanence criteria.
(See further commentary within, relating to impact of proposed legislative changes.)
Recommendation: Revising planning SOPs to include holistic risk assessment per ‘Operational Protocol for NDIS Participants At Risk’ and documented discussion of planning responses
The NDIA must immediately update the planning process to include a holistic risk assessment which reflects the obligations of NDIA staff per the joint Operational Protocol for participants at risk. All Standard Operating Procedures and Practice Guides relating to planning must be updated to reflect the need for a holistic risk assessment during the planning conversation, including specific prompts for understanding the unique risks faced by rural and remote participants, the need for genuinely flexible application of Section 31(j) of the NDIS Act, and the delegate’s obligation to record any risks raised by the participant, any supports requested to mitigate these risks, and the participant’s explanation of how this relates to their disability.
Recommendation: Compulsory documentation of decisions to overrule allied health assessments which state recommended AT is disability-related when denying under Rule 5.1(b) and/or (d).
This should also include compulsory documentation of decisions to overrule allied health advice which states recommended AT is required to mitigate risks to participant, particularly when delegates reject NDIA ownership of risk based on Rule 5.1(b)/(d) or s34(1)(f).
Section 34(1) checklists, and specifically, all inputs, associated interactions or internal notes recorded by delegates in assessing Rule 5.1(b) and (d) of the National Disability Insurance Scheme (Supports for Participants) Rules 2013, should require the delegate to record
Catherine Walker Submission to Rural NDIS Inquiry Page 1
justifications for overruling allied health assessments which state that a requested AT item is disability-related and most appropriately funded by the NDIS.
Delegates should also be required to record whether assessments state a participant is at risk in the absence of the requested AT. Further, if delegates reject NDIA ownership and duty of care relating to this risk, grounds must be documented and provided to the participant to enable legal recourse.
Recommendation: “Look for universal design solutions rather than disability specific solutions – these are likely to be more widely available and less expensive.”
(Every Australian Counts, NDIS Review consultation report, p. 14)
Recommendation: “The NDIS needs to engage with and communicate better with rural and regional services and people to understand the reality of life in a given area.”
(Every Australian Counts, NDIS Review consultation report, p. 29)
I am struggling to comprehend the cognitive dissonance between the intent to formalise alternative commissioning as an essential approach to culturally safe support in Indigenous communities, or tailored support in remote communities, and the more prescriptive approach to be imposed on everyone else telegraphed in the proposed legislation released at the end of March 2024; including those of us in “Rural” MMM5 thin markets.
Perhaps a broader alternative commissioning framework should be formalised to enable individuals to define their own support solutions, as well as local groups?
“Community commissioning: is where communities are empowered, or use cooperative approaches, to lead the commissioning process. Communities, rather than governments, determine the services and providers that best meet their needs. Community commissioning may be implemented using direct or integrated commissioning.” 1 (Blue emphasis added)
Recommendation: Emergency high-cost AT out of Core when supported by AT assessment recommendations, but only if it triggers an automatic plan reassessment and bars NDIA from pursuing Compliance action.
I had more than enough funding left in my last plan to purchase the AT in question outright. Please see commentary within on difficulties escalating my level of risk with Core funds available, repeatedly being advised to use my Core funds flexibly to mitigate risks, and DCEO McNaughton’s recent comments at Estimates again advising participants to use funds flexibly, despite the $1,500 limit on AT from Core. The current risk matrix still has not been updated to reflect Ombudsman criticisms from 2022 about the lack of an assistive technology specific risk, which means desktop reviews conclude people in my position are safe. This could kill us while waiting for a response.
1 NDIS Review, Alternative commissioning for remote and First Nations communities (p. 10) https://www.ndisreview.gov.au/sites/default/files/resource/download/alternative-commissioning_0.pdf
Catherine Walker Submission to Rural NDIS Inquiry Page 2
How will this submission address the Terms of Reference?
I had grand plans to structure this according to the Terms of Reference, but this submission is already overdue, and I’ve lost several additional days of progress because my brain refused to cooperate for the entire heatwave. (And subsequently, was entirely burnt out during and after the pointless internal review process.)
As such, Terms of Reference (a), (b) and (c) are largely addressed in my reflections on everything that happened once I got to the planning stage, as many points are relevant to all three. Some evidence falling under (e) “any other related matters” also comes up through the chronological account, while the remainder and additional themes of importance are addressed at the end.
As the proposed legislative changes dropped while I was finalising this submission, related commentary is added in bold red type.
What has changed since the inquiry into the Capability and Culture of the NDIA?
Two-year appointment to the Participant Reference Group
Yes, that’s right: The NDIA is actually paying me for my advice and intellectual labour once a month! It’s refreshing after my previous commentary on the economic impacts of these administrative battles, though it is a drop in the ocean against the protracted economic impacts of endless back-and-forth over my individual needs as a participant, addressed further under e) any other related matters.
Nonetheless, I am grateful to have a seat at the table during such a defining time for the future of the NDIS, and the PRG team are some of the Best Eggs in the agency. I will report back to this inquiry on any developments about rural issues I raise, or answers to questions of leadership, should these be forthcoming and approved for release.
We traded rural Victoria for rural South Australia
And since NDIA leadership are yet to take us up on the offer, my OT and I warmly invite any or all of you to complete a site visit if an Adelaide hearing is scheduled, or if any of you are passing through SA during this inquiry. Seriously! You’d be most welcome.
I have upskilled in self-advocacy to the extent that one Commission official complimented me on this, yet those close to me suspect I am being targeted for pushing back and for knowing too much
Newsflash: Everything I have learned and added to my NDIA Survival Toolbox is either already in the public domain, lawfully acquired under FOI, or a direct result of my lived experience engaging with this system as both a participant and an informal support.
The only confidential information I have access to is carefully controlled by the NDIA, and I am legally bound by a confidentiality agreement as a PRG member.
Catherine Walker Submission to Rural NDIS Inquiry Page 3
I just read way more legislation and policy than most non-lawyers, especially NDIA staff (or so it would seem), and especially when I can’t sleep. Which is often. This means I know my rights and will firmly defend them when they are breached.
NDIA staff rarely respond well to this, especially when it goes against their script.
I would also absolutely reject any suggestion that participants being well-informed in the absence of transparency equates to ‘gaming’ the system.
This is surviving the system.
This is about human rights, and upholding the law when the NDIA does whatever it wants and evades accountability for it. This is about expecting the NDIA to live up to the values claimed.
This is also about autistic survival in a system which is yet to relinquish the stranglehold it has maintained on my monotropic hyperfocus since July 2022, and which perpetually reinforces risk factors for autistic suicidal ideation, as interrogated at length across all three of my submissions to the Capability and Culture inquiry.
I had, however, brushed off concerns from loved ones that NDIA staff could be treating me with suspicion. That is, until a lengthy conversation with my internal review officer that repeatedly gave me mental whiplash, when something as innocuous as a fragment of information about funding decisions was treated as suspicious: The internal reviewer became accusatory when I mentioned I had the Home and Living calculator output, questioning me on where I got it as though I should not have access to this information despite receiving this lawfully under FOI.
Goodness, Committee… How dare a lowly participant seek clear and detailed justifications for Commonwealth funding decisions that appear to directly contradict evidence provided?!
But that’s not the worst anecdote from conversations with this delegate by far.
I did indeed lose Specialist Support Coordination
Just like I predicted in Submission 86.1.
I fully acknowledge I now have a strong knowledge of the NDIS. However, that means Level 2 Support Coordination adds no value whatsoever, and I have ongoing complex thin market and disability-related health needs, sufficient regular supports are not yet established, my housing needs are unresolved, I have no informal supports available for practical help with my husband no longer working from home, and I am perpetually operating from a cognitive energy deficit which means my knowledge and the ability to articulate it are not available on demand, let alone trying to maintain multiple attention streams.
Given the documented ‘challenging behaviour’ I have experienced from NDIA staff when I use the self-advocacy skills and knowledge acquired since becoming a participant to insist that they be accountable and fulfil their legal obligations, it’s also kind of important to have an experienced intermediary when they refuse to engage appropriately, even if it is to debrief, plan and script next steps so I can have another attempt.
Catherine Walker Submission to Rural NDIS Inquiry Page 4
What hasn’t changed? (Spoiler: Too much.)
NDIA Culture
This is evident throughout. The fact I’ve seen even worse NDIA behaviour since we last talked, when trying to address disability-related risks to my life, disgusts me. If there is one particularly illustrative anecdote to pull out of timeline order here, it’s another one from that internal review officer.
It’s the moment I asked if it was possible to expedite the AT aspect of my internal review decision since that was the immediate risk and was told I absolutely could: IF I withdrew all the other matters under review and relinquished my external review rights to those matters.
The impossible choice between autonomy and safety suddenly turned into an impossible choice between a chance of safety, and relinquishing my legal rights, with no guarantee that safety would be the outcome; a well-founded fear, given the mobility aid was indeed denied again.
I am absolutely appalled this was even suggested and question the lawfulness, compatibility with the APS Code of Conduct, and relationship to the Model Litigant Obligations.
But, above all, I condemn the NDIA for conduct so unethical that it would sooner endorse delegates placing the weight and consequences of such a decision on a participant at risk, than consider its duty of care and respond to all the evidence indicating this was the NDIA’s risk to address.
Even armed with knowledge of the law and my human rights, clinical evidence, and endless scripts to try and protect myself from the unethical and manipulative strategies I have experienced repeatedly in NDIA communications, I felt the pressure to say yes.
This is shameful. This has no place in review of Commonwealth social services funding decisions, especially for participants at risk. This is coercing participants to relinquish rights they may not fully understand. This should explicitly be made illegal. If it already is, higher authorities can audit my file for all the names.
Multiple disabilities
I’m sure the Secretariat and Committee are groaning as they read this.
Me too, and I am furious to be writing about it again, but the government and NDIA seem to be actively ignoring the final Capability and Culture report, acknowledging only the DRC and NDIS Review. This is despite the NDIS Review mirroring its leading recommendation:
“The committee recommends that the National Disability Insurance Agency assess people according to the totality of their disabilities and no longer require participants to nominate a ‘primary disability’ and ‘secondary disability’.”
If the Committee seeks a response from the NDIA on this matter, I ask you to insist they do better than using some vague suggestion of co-designing NDIS reforms carefully as an
Catherine Walker Submission to Rural NDIS Inquiry Page 5
excuse not to address the current problems. (Because the first legal “reform” shows they intend to maintain the status quo, just lawfully and without ‘primary’ and ‘secondary’ categories. The impairments recognised will still be whatever the NDIA decides.)
All the issues raised through the previous inquiry stand, as do the impacts on participants.
The NDIA continues to play outrageous power games with participants who have already met the threshold for access, and that whole risk of Robodebt 2.0 remains for every single participant with multiple disabilities.
They continue to breach their own published Operational Guideline and the new Internal Access Decision Tree released under FOI last year.
That whole ‘Disability Soup’ argument I made in Submission 86.1? That was crystal clear in this Decision Tree the entire time, and this policy document (released under FOI request 22/23-1046) was brand new at the end of 2022!
And then the proposed legislative changes dropped…
Committee, you recommended the NDIA consider the totality of our disabilities. So did the NDIS Review. The new bill merely locks in the current problematic approach to render it lawful.
This is bad, bad news for all of us who told you multiple disabilities mattered.
I will address this in detail in a separate submission on the bill to the Community Affairs Committee, but I ask you all to recall the Disability Soup analogy in considering the rural impacts outlined within, and what this will mean for people like me if the current approach of dissecting participants and blocking attempts to have all impairments reflected—and reported truthfully in NDIS data—is made lawful.
Chair, I watched you sitting behind Minister Shorten when the bill was released, and I was shocked when the Minister’s speech reassured everyone primary and secondary disabilities would be no more, only for the actual bill and explanatory memorandum to reveal the Minister and agency’s intention to make deeply unfair and problematic Operational Guidelines law without holding the NDIA accountable for their brutal and procedurally unfair approach to recognition of multiple impairments.
Catherine Walker Submission to Rural NDIS Inquiry Page 6
What use is ditching the primary and secondary labels if the NDIA is not only given legal authority to continue the power games—when they have actively been abusing this process for years—but allowed to dictate and audit spending based on their interpretation of impairment-related supports rather than overall disability as it impacts us individually?
How is this NOT going to end in a Robodebt 2.0 scenario and countless lengthy, traumatic, and costly court battles, especially if additional impairment decisions remain bundled with Section 34 decisions, rather than having rights to external review of only the decision not to recognise a particular impairment?
The recent government response to this recommendation of the previous inquiry states:
Final Report – The Committee recommends that the NDIA assess people according to the totality of their disabilities and no longer require participants to nominate ‘primary disability’ and ‘secondary disability’.
Australian Government response to Final Report recommendation 1: Noted
The Government notes this recommendation overlaps with Recommendation 3 of the NDIS Review to provide a fairer and more consistent participant pathway.
The Government is considering these issues further in response to the release of the final report of the NDIS Review in late 2023.
And this is what the NDIS Review said:
“The budget should be based primarily on support needs and intensity, rather than functional impairments… Focusing on support needs is also intrinsically more person-centred and strengths-based than the functional assessments and deficit based approach used currently… Focusing on the whole person, their circumstances and their support needs would also end the current unhelpful and inappropriate focus on establishing a primary or secondary disability. Budgets will be linked to support need not diagnosis.” (Final Report, p. 88)
“Often planners are restricted by the NDIA and its systems to focus on a limiting concept of a primary disability (which has only been maintained due to limitations of NDIA technology).
Evidence that does not strictly relate to the ‘primary disability’ diagnosis in the NDIA system is often not used. This is because supports will not be funded under the NDIS if it is not related to the participant’s disability.
The NDIA appears to take the view that a participant’s disability is the specific diagnosis or impairment that access to the NDIS was granted for. This is confusing for participants with multiple disabilities who justifiably understand their needs more holistically and expect the same from the NDIS.” (Supporting Analysis, p. 260)
So why is the Government’s solution to let the NDIA maintain the status quo, and, even worse, to specifically link funding and definition of eligible NDIS supports to individual impairments, rather than the overall disability and associated individual support needs?!
Catherine Walker Submission to Rural NDIS Inquiry Page 7
Chair, I urge you to call Minister Shorten in on the way he misrepresented the bill’s answer to this and the failure to engage with this Committee’s evidence and recommendations around the multiple disability issue, the complete lack of NDIA accountability and the associated impacts on participants and families.
I urge the entire Committee to advocate for amendments to this bill which reflect the evidence heard throughout the last inquiry and the need for this bill to legislate NDIA accountability and procedural fairness for participants, not to legislate the unfair practices the NDIA clearly has no desire whatsoever to change.
All we are asking for is to be considered as whole people, whose disabilities can be as much about the intersections between impairments as the impairments themselves. When it comes to rural participants like me, that understanding from all NDIA staff absolutely can be the difference between the life the current NDIS Act imagines, and fatal injury.
Catherine Walker Submission to Rural NDIS Inquiry Page 8
Key Themes, Legal and International Context
Defining Assistive Technology
The Assistive Technology Operational Guideline provides the following broad definition:
When we talk about assistive technology, we mean equipment, technology and devices that help you do things you can’t do because of your disability. Or things that help you do something more easily or safely. Assistive technology involves things designed to improve your daily life and help you do everyday things.
Interesting, then, isn’t it, that they would insist on trialing disability-specific options even when these have been deemed completely inappropriate and unsafe…
Core Theme: The biggest rural safeguarding gap is the one the NDIS Review completely failed to capture and that the NDIA refuses to own
It’s the one arising directly from NDIA planning decisions, that is completely invisible from NDIA risk assessment, reporting, and safeguarding approaches.
Per the original 12th December 2023 email to Deputy Commissioner:
I’ve copied the NDIA CEO’s office into this email … as I quickly realised this is unlikely to fall within the actual safeguarding scope of the Commission.
But that’s kind of the point, isn’t it? Such gaps in ‘visibility’ are an issue both agencies need to grapple with, because it isn’t an unregistered provider placing my life at risk, but an issue I told the NDIA about a year ago.
For the CEO office’s benefit, the discussion in question specifically refers to the failure of NDIA & NDIS Commission safeguarding scope to capture the fact I’ve been at ongoing risk of fatal injury using my quad bike as a mobility aid at my Victorian property, then visiting my two horses at their temporary agistment in SA, and now our new SA rural property. This is despite the NDIA being in possession of advice from a subject matter expert on rural safety and accessibility since November 2022 which addressed the specific dangers for someone with my disabilities and recommended a Side-by-Side Vehicle (SSV) as an appropriate and reasonable alternative.
…
The NCC phone call on 6th Dec was to check if any progress had been made amidst PACE delays, as my plan was about to rollover and I realised that, unless escalated, the safety issue might continue to go unnoticed if a desktop review concluded I was okay to wait because I have plenty of funding for urgent needs.
Except the most urgent need of all, because without express written approval from the NDIA, I cannot use leftover funds from barriers to supports in the last year for a high-cost capital purchase pending a trial and assessment, or flexible Core funding to rent the high-cost AT as a temporary safety measure and longer trial until a plan reassessment meeting can take place. I am more than happy to elaborate on why an
Catherine Walker Submission to Rural NDIS Inquiry Page 9
all-terrain power chair is not a safe or viable AT solution to whichever planner I end up working with this time, because that also would not be safe in my circumstances or allow me to manage the disability impacts adequately.
As I said in my final NDIS Review submission, the coroner would have a field day.
To put it in a broader safeguarding perspective, this is how I put it in a recent article for PWDA (which I actually sent to the CEO for comment on another aspect, but assume was filtered; see https://pwd.org.au/how-the-ndis-could-work-better-for-me/):
“Two main things make me unsafe in ways the NDIA just doesn’t understand.
Being autistic with a physical disability means I don’t always notice my body’s warning signs soon enough. I can get way too hot or hurt myself without realising. I experience countless increased symptoms including dizziness when on my feet for long. I forget to stop and rest.
This can be dangerous in Australian weather, especially in a rural area. I am in more danger when I am alone on a rural property. I am in more danger if I use my quad bike or farm tools when I am exhausted. I am more likely to die in a bushfire.
More suitable equipment would keep me just as safe on a rural property as someone without my disabilities, but the NDIA doesn’t think I need this equipment because they don’t realise what disability and safety means for me. They didn’t listen to a rural safety and accessibility expert and my doctor because the advice did not come from an Occupational Therapist.
The NDIA needs to realise that safeguarding means listening to what I need to overcome disability barriers to my goals without risking my life the first time I tell them, because I might not get a second chance.”
…
The systemic issue is that I’ve been flagging this for a year and remain at risk of death both because I can’t manage without the quad bike due to my disabilities and because my disabilities place me at higher risk, and the NDIA and NDIS Commission are more focused on assuming what people like me need to be safe (the other part of our discussion regarding unregistered providers and how essential many of us feel this choice and control is to our safety) than actually asking us what is making us unsafe right now.
…
I find it extraordinary that across 1500 pages, the NDIS Review final report and supporting analysis do not address rural safeguarding issues, in favour of dictating how supports will be delivered to us in thin markets while simultaneously gutting the choice and control rural participants are so reliant on around unregistered providers (which was where our conversation started in relation to how horrified I was to find out I would no longer be able to use local services and businesses without disclosing
Catherine Walker Submission to Rural NDIS Inquiry Page 10
my participant status, and how vulnerable that would make me feel starting over from scratch in a small rural community).
The supporting analysis at least references the ‘Every Australian Counts’ rural and regional focus group I took part in…but not the safeguarding issues raised! “Local needs and circumstances” must capture all needs including safety and flexibility, not just allied health.
The NDIS Review has hugely failed rural participants by fixating on one rural issue rather than addressing the broader gaps impacting us… Rural participants need rural solutions because city solutions just don’t cut it. For those of us on rural lifestyle properties, it is also a clear NDIS responsibility, not a JobAccess responsibility.
What’s the point of capturing information about a participant’s context if you don’t properly capture – and act on – things that could cost our lives solely because of arbitrary prerequisites for Capital funding which directly disadvantage rural participants?
The systemic solutions here – especially any which capitalise on rural ingenuity or applying rural risk assessments to buying second-hand AT from neighbours when waiting for an OT and NDIA approval could mean death – may, yet again, fall into the gap between the safeguarding scopes of the NDIA and NDIS Commission or its future iteration. As agencies, what are you going to do about it before someone like me gets killed?
…
Independence is meant to be a key factor in our goals and outcomes, and safety is your duty of care.
I will certainly be addressing these factors in the Joint Standing Committee’s new rural inquiry and look forward to responses from both of your agencies and discussing how you can have ‘visibility’ on risks like this, including clear escalation pathways and ownership when something like this does not fall into the Commission’s current scope or have any obvious pathway other than s48/s100 within the NDIA.
Spoiler: Ultimately, it was worse than the NDIA not taking ownership. The planning delegate outright rejected ownership of the risk once the Occupational Therapy assessment concluded the universal design option was indeed the most appropriate. And the rejection of responsibility didn’t end there.
Section 31(j) versus Section 34
How many planners can recite Section 31(j)? How many even know they have a legal obligation to, so far as reasonably practicable, “facilitate tailored and flexible responses to the individual goals and needs of the participant”?
This is another issue I have already raised (repeatedly) with the CEO, as noted in Responsiveness of all NDIA staff to Section 31(j), and which comes up throughout.
Catherine Walker Submission to Rural NDIS Inquiry Page 11
Human Rights Context
3 Objects of Act
(1) The objects of this Act are to:
(a) in conjunction with other laws, give effect to Australia’s obligations under the Convention on the Rights of Persons with Disabilities done at New York on 13 December 2006 ([2008]
ATS 12)
As CEO Rebecca Falkingham noted in evidence given during the 14 February 2024 Senate Estimates session, many changes recommended by the NDIS Review panel will require the NDIA, among others, to consider “what that means from more of an international obligations perspective as well. We’re really going to take the time to get that work right.”
However, my own experience demonstrates that NDIA staff—and policy-makers—routinely breach the “international obligations” it is their job to help “give effect to” under Section 3(1)(a) of the NDIS Act. This is explored further throughout, but especially in the section addressing Term of Reference (e). This is by no means an exhaustive analysis.
Safeguarding Participants from the NDIA: The NDIA needs to stop using one legislative obligation as an excuse while disregarding or outright breaching others
Please refer to the closing sections of Submission 86.1 to the Capability and Culture inquiry.
But I also ask the following questions of the Committee, and the Government as they consider the proposed legislation: We have an entire Commission to ‘safeguard’ us from providers. Who safeguards us from the NDIA? Particularly around time-sensitive risks and impacts the Ombudsman won’t see for months?
More importantly, how do we legislate a stronger duty of care on the NDIA and all delegates of the CEO, particularly around the safety impacts of planning decisions which fail to provide tailored and flexible responses to individual needs, such as in the potentially life-threatening rural contexts illustrated in this submission?
Because, by the time my internal review decision of the plan discussed in this submission was finalised, the CEO had been briefed (whether or not she had read the emails), and various senior staff were also aware of my situation, and I was advised the Acting Branch Manager of Reviews would sign off on the letter affirming the planner’s decision, after I questioned the NDIA’s duty of care one last time.
As in, leadership endorsed leaving me at risk of death, ignoring the written expert advice the risk of death was disability-related and the NDIA’s responsibility.
To borrow that beautiful line from The Juice Media: “Cool and normal!”
Catherine Walker Submission to Rural NDIS Inquiry Page 12
So, what happened next? (Terms of Reference a, b, c, and e)
And how did it even end up at internal review? Well, going back to the fire day, the result of those emails at least got the planning delegate moving.
Let’s Play Charades: The planning meeting
I finally received a request for a planning meeting the following week. At my request, I received the AT outcome the day before, along with the Home and Living decision that I’d been told was the reason for all the delays… Except that was dated 22 December 2023.
How long would I have waited without driving the point home that day?!
But I went straight to the Word document with the AT decision.
Declined. The kicker?
Next Steps: …
Physical trial of disability specific powered mobility device options should be completed to determine their suitability, should the participant require mobility support to independently access her home property.
I sent it to my OT with a rather incredulous comment and an invitation to respond if he could complete it before the meeting. He replied that night:
“I write with somewhat displeasure and loss of confidence in the NDIS system to say the least. I have clearly outlined risks with other items noted, so respectfully ask whoever made such decisions, complete a site visit and I will gladly demonstrate the failures of your recommended equipment. I will not do this with Cat in the mobility devices noted by your agency for safety issues noted. However, if said person feels qualified for such advice and demonstration, I’m happy to proceed with said person or myself in the chair…
As outlined in the AT request, such request has been explained to be the most effective personal mobility device, with multiple purposes. It may be the choice of NDIS to use words or categories that deny such, however professionally, the requested is clearly the most suitable for the need requested. What is a motor vehicle? An electric wheelchair has two to four motors, all electric, it can move people and goods from point A to B etc. …
I appreciate the next steps in an attempt to show a plan. Point one has been responded within. Point 2, suggesting physical trial I fully agree with. I complete such often, I have an outback scooter (as mentioned in the report) and a magic mobility X8 at my house.
I deemed such a trial unsafe.
This has been addressed in the report and within.”
I also sent him the Teams invite, as he had indicated he would be in the office the next day.
Catherine Walker Submission to Rural NDIS Inquiry Page 13
I sent the response an hour before the meeting, along with other written requests and important notes. She hadn’t seen it and was rather surprised when my OT joined us.
He spent around 50 minutes with us, leaving with the impression the delegate would follow up if she had any further questions. The whole meeting lasted almost three hours.
But the illusion of a meaningful and collaborative planning meeting to develop a plan “with the participant”, as required by law, was just that: An illusion. A charade.
Implementation Meeting: Denial of supports, answers & duty of care
The NDIS Act makes it clear that supports are not meant to be one size fits all. Yet, as one witness put it, there was “no individualised acknowledgement at all.”
I even pointed out this disconnect from my daily reality to the planning delegate during the implementation meeting: That this was just a day in the office to her, but life and death for me.
This was not my first encounter with this planning delegate. She played a major role in my Loved One’s battle as documented in Supplementary Submission 86.1 to the Capability and Culture inquiry.2
I knew the way she acted in the planning meeting was too good to be true, but despite my fears, I gave her the benefit of the doubt and tried unbelievably hard to meet her halfway. She even thanked me for engaging candidly and vulnerably at the end of the almost-three hour planning meeting. It was a nice speech.
But, predictably, my fears were realised when the plan came through, the delegate having never made the follow-up call to my OT that she had asked for.
I didn’t bother masking my directness at the implementation meeting. I insisted she stand by the decisions she had made and explain herself.
She couldn’t.
Having put her on the spot, but unwilling to let her off the hook when it is her legal obligation to substantiate her decisions, I suggested I give her the afternoon to gather her thoughts and respond via email.
Given this was an implementation meeting, I also asked her how she intended I “implement” the plan she had approved to safeguard myself in the absence of the recommended AT.
She couldn’t answer that, either, except to indicate she was rejecting NDIA ownership of the risk.
When I put the following quote to her and highlighted her obligations under it, she seemed completely unfamiliar with it and asked me to send it to her.
2 Supplementary Submission 86.1, Inquiry into the Capability and Culture of the NDIA https://www.aph.gov.au/DocumentStore.ashx?id=6ae287a3-8dbe-4d49-9029-6b92652ce370&subId=730004
Catherine Walker Submission to Rural NDIS Inquiry Page 14
Operational Protocol for NDIS participants at risk (“As agreed between the
National Disability Insurance Agency and the NDIS Quality and Safeguards
Commission, Date: July 2022”):
“…a person’s disability, combined with their individual circumstances, access to protective mechanisms and quality of supports might contribute to, or increase the potential risk.
At each stage of a participant’s interaction in the NDIS, consideration must be given to how the participant’s disability, personal history, personal circumstances and quality of supports might contribute to their level of risk and what the responsibilities of the NDIA and the NDIS Commission are to ensure that participant’s safety.“
I agreed and asked her to respond to this in the email, too, giving her the opportunity to highlight it as a systemic issue she could escalate if she felt she had failed this obligation, rather than a mistake to be owned by her as an individual. Hell, even if she had stood by the denial of NDIA responsibility, this was the perfect opportunity to put it in writing formally.
But the only implementation email I ever received was a generic script. When I responded to ask where the explanations we had discussed were, copying it to the Feedback inbox, I received a “Case Closed” notification.
She had not only evaded the only explanations for her decisions that mattered but shut down any recourse or escalation pathway via the complaint referred from Minister Shorten’s office. NDIA processes had deemed her unqualified assessment of the risk and who was responsible for it sufficient to overrule the experienced OT who had already provided substantial evidence the risk was disability-related and therefore the NDIA’s duty of care.
I stand by all my prior criticisms of NDIA complaints handling and premature closure thereof in my evidence to the Capability and Culture of the NDIA inquiry,3 but the Minister’s office let this slide, too.
This was my response to the notification the complaint would be closed following approval of the plan, which I copied to both Minister Shorten and the CEO:
Dear [Ministerial and Parliamentary Complaints Officer], please do not close this complaint or report back to Minister Shorten without further discussion following my implementation meeting at 1pm today. The Minister needs to know what has actually happened here. The new plan has increased my level of risk, not decreased it, because the $10K plus worth of funded reports have been directly contradicted in the planner justifications.
I will be making a complaint to the Australian Human Rights Commission on grounds of disability discrimination and human rights breaches under the UNCRPD if this is not resolved promptly.
3 Submission 86, Inquiry into the Capability and Culture of the NDIA https://www.aph.gov.au/DocumentStore.ashx?id=17030fe4-ceaa-43a5-8409-22cfcc00282d&subId=730004
Catherine Walker Submission to Rural NDIS Inquiry Page 15
I assume they took the last part as an “unreasonable” suggestion, because they closed it anyway, completely ignoring the ongoing risk based on the planner’s decision to reject the NDIA’s duty of care, let alone the agency’s “international obligations.”
But I wanted to make it clear the Ombudsman would not be my next step, because as we have previously established, autistic complainants like me have good reason to fear we will face the same discrimination in the Commonwealth Ombudsman’s handling of our complaints as is endorsed in its complaints handling guidelines, replicated throughout government agencies.4
The new Complaints policy: Fantasy versus Reality
The obvious NDIA response to criticisms of complaints handling would be to point you to the sparkly new Enquiries, Feedback and Complaints Policy, published just this February 2024, so I’ll save them the trouble. This policy was co-designed, and it shows. It’s great.
For example:
“Respectful: We recognise your safety and rights when you raise an issue. Our staff are accountable and will respond to you with empathy and understanding.”
And:
“When we receive your enquiry, feedback, or complaint, we need to: work out how we can answer your enquiry or resolve your feedback or complaint…
To do this we will consider… individual risk including participant safety risks.”
The problem is that frontline staff don’t seem to have received the memo. Or, as I put it to another senior staffer not involved in service delivery: This wonderful, co-designed policy is complete fantasy when I score my own complaints-handling experiences against it, including very recent experiences.
Fantasy 1: Person-centred risk assessment
This one is evident throughout. It is very concerning that the risk matrix still does not seem to have a risk assessment specific to absence of Capital funding for critical high-cost assistive technology despite criticism to this effect from the Ombudsman in 2022.
Fantasy 2: No wrong door & Fantasy 3: Communication
These fantasies star the line manager of the planning delegate, who responded to a request for contact when I asked the NCC to request the agreed follow-up from the planning delegate.
Per my response to acknowledgment of another MaSCO complaint (presumed closed):
4 Supplementary Submission 86.2, Inquiry into the Capability and Culture of the NDIA https://www.aph.gov.au/DocumentStore.ashx?id=c87e7e3c-ebcf-4d2b-bf8c-4e655c89ed92&subId=730004
Catherine Walker Submission to Rural NDIS Inquiry Page 16
I would very much like to see the interactions recorded by the [planning] delegate and her line manager, because I can’t imagine they demonstrate any duty of care or accountability on behalf of the NDIA whatsoever.
My attempts at self-advocacy were responded to with denial of all responsibility and gaslighting by the delegate, and I would characterise the line manager’s response to such attempts as ruthlessly and callously dismissive.
She clearly did not appreciate my deviating from her predetermined agenda of shutting me down and placing the responsibility of safeguarding on my support coordinator – with a plan that makes this impossible – by asking for accountability.
Some systemic feedback about participant communications that I’d also love you to capture… because this happens all the time and I’m sick to death of trying to finish my own sentences without being painted as unreasonable, when delegates never tolerate interruptions despite feeling perfectly entitled to steamroll our own attempts to talk as they see fit:
Whatever communication training delegates are receiving, especially for anticipated “difficult” conversations, is absolutely atrocious and clearly encouraging a culture where delegates freely breach their NDIS Act, UNCRPD and APS Code of Conduct obligations regarding their engagement with participants, not just their decisions.
If said training is also characterised through any kind of behavioural lens, it is also ableist and directly discriminatory against autistic participants such as myself.
Yes, even if it is endorsed by the Commonwealth Ombudsman. The DRC already found as much.
I should not put down the phone after speaking to a line manager, feeling triggered, scolded and traumatised for asserting my legal rights, when she could have instead said, “You know what, the internal review has nothing to do with me or my delegate anymore, but yes, I can escalate it for you or get someone else to do it.”
I strongly suspect the real reason she didn’t is because that would amount to the tiniest admission that perhaps her delegate did indeed make a huge mistake, and because that would also reflect poorly on her.
When my life, autonomy and human rights are at stake, that just is not good enough.
Deliberately rejecting the NDIA’s duty of care by making it my support coordinator’s problem – when the risks cannot be mitigated with Core funds – while simultaneously refusing to assist me with escalating the review to get it into the system, is extraordinarily irresponsible and reckless.
I did provide positive feedback in this email too: About the NCC operator and Team Leader who cleaned up this mess over several hours later that night.
As for the eventual overdue phone explanation of my Home and Living decision, which required a direct email to the Branch Manager of HaL Operations and still did not come from the actual decision-maker (apparently that’s just the way they do things), this was terminated
Catherine Walker Submission to Rural NDIS Inquiry Page 17
after the branch complaints officer refused to engage with my questions and then complained that the discussion was not productive.
It absolutely was not productive, but only because she was unable to answer many of my questions, and absolutely unwilling to elaborate on the shallow and poorly evidenced answers to others, or to acknowledge my request that I receive an explanation from the delegate who actually made the decision—as required by law—and not have the request misleadingly recorded as complete internally.
I’m still waiting for the information requested both under FOI and from said Branch Manager.
Responsiveness of all NDIA staff to Section 31(j)
The NDIA’s approach to ‘consistency’ in serving rural, regional and remote participants is inconsistent with the NDIS Act and UNCRPD
To date, CEO Rebecca Falkingham has never replied to any of my emails, though she did forward one sent halfway through a 3hr10min phone call to the National Contact Centre when attempting to have my internal review request properly triaged according to risk level, after the planning delegate had cut off my escalation options, and their line manager refused to assist, as noted in the No Wrong Door fantasy. I did, however, get the opportunity to ask the CEO a couple of questions at my first PRG meeting. This is from the follow-up I sent her, to the rural question, when I felt the answer had gone off-topic.
[What] about existing legislative obligations like Section 31(j)? The mechanism is already there. Your planning teams just seem unwilling, or perhaps afraid, to apply s31(j) when required.
That is an outcome that should be measured. It is just as important a test to be marked “met” or “not met” alongside any s34 checklist in PACE, which you keep telling us is made to be tweaked. Consistency is inconsistent with both the NDIS Act and UNCRPD if it indirectly discriminates against a particular group, and so many planning restrictions are agency inventions. The legislation is not the problem or constraint here.
Risks are another outcome that should be measured in plans, but again: Only certain risks are currently captured to the exclusion of all others.
When I challenged my planner on this, she acknowledged the risk but flat out refused to take any NDIA ownership of it, when the OT had provided clear evidence that it was the NDIA’s risk to address. My complaint was closed against my express wishes after she had approved the plan and sent a generic implementation email.
My follow-up, requesting she explain how the approved plan meets her obligations under the Operational Protocol for NDIS participants at risk as discussed during the implementation meeting, still has not been answered three weeks later, even after forwarding the bounced copy to the team inbox she had communicated from. I was completely cut off from any timely recourse, while remaining at risk.
…
Catherine Walker Submission to Rural NDIS Inquiry Page 18
I am not the only rural participant who has experienced this kind of indirect discrimination or been placed at risk by it.
So, I repeat the below invitation from my OT and I, regardless of the internal review outcome. He would genuinely love you to take him up on it, because this is much bigger than me.
Come out here yourself.
Bring as many colleagues as you like…
Understand the problem properly before you try to fix it.
Listen to the solutions we’ve already thought of.
The NDIA doesn’t understand rural needs or the implications of s31(j) because the NDIA actively chooses not to. The CEO is enabling this.
As my support worker, Jess, put it, having witnessed much of this play out over many weeks:
“They just aren’t getting the picture about what is compatible with your disability and environment.
With the rural power chairs that were completely unsuitable for your unique needs and challenges, it was like them recommending a wheelchair that couldn’t fit down the hallway of a participant’s city house, or prescribing someone a wheelchair with no brakes, and telling them to go down a ramp…
As simple as it sounds, a lot of [this] is just because they don’t acknowledge, understand – or even attempt to understand – rural participants and how your daily life is vastly different from someone who is living in the suburbs.”
(Included with permission.)
If it’s so obvious to everyone else, why does the NDIA refuse to engage with this?
I look forward to exploring this further if the CEO does indeed open up further conversation in this area, and I will certainly be raising further concerns arising from the interaction of proposed legislative changes with this issue in PRG meetings addressing the bill.
I will happily update the Committee on any positive changes or seek permission to do so if further engagement on the s31(j) issue and its relationship to rural needs occurs during confidential PRG work.
But I will not accept excuses that use Section 34 as a shield from other critical legislative obligations such as Section 31(j), especially when it risks grievous harm to rural participants like me, as a direct result of failure to act or tailor supports to individual needs.
I will not accept it from planning delegates, internal review officers, the National Contact Centre, or middle managers, and I expect a great deal more from the CEO in this area in the second half of her tenure. Starting with adding a Section 31(j) free-text justification and participant-scored outcome measure to the planning process in PACE.
Catherine Walker Submission to Rural NDIS Inquiry Page 19
The ongoing problem of multiple disabilities in the planning big picture
Sigh. Let’s get this one out of the way. Again.
(But please don’t tune out, given the scary implications of legislating the NDIA’s current approach rather than making it fair and MUCH easier to review separately.)
In my final evidence to the Capability and Culture inquiry, I challenged the misleading nature of the CEO’s official statement on multiple disabilities, and Deputy CEO Scott McNaughton’s equally misleading statements to the 2023 ADHD inquiry.
Shortly after these hearings, I had the opportunity to give evidence responding to the DCEO’s comments to the ADHD inquiry:
“My name is Cat. I’m a 34-year-old NDIS participant. I have a severe inattentive ADHD, first diagnosed in 1997 and confirmed by three adult ADHD specialists since. But if you ask the NDIA, my primary disability is autism, and my only secondary disability is Ehlers Danios Syndrome, which was already a huge fight to have recognised.
It isn’t as simple as taking Scott McNaughton’s advice to this inquiry and just advising the agency of co-occurring ADHD. I listed ADHD on my access request form. It was noted in the clinical psychologist’s autism diagnostic report. My treatment has been stable for 12 years, but the default for the NDIS is that only autism matters, when the reality is that ADHD can be just as disabling.
…
When it comes to the NDIS, I really want the media and the public to understand that when you hear that the cost of autism is blowing out, you need to ask which frequently co-occurring conditions … are erased from that statistic and the national conversation. Because this myth is feeding anti-autistic sentiment while denying the complex reality of our support needs.
… I ask the committee to press the NDIA on why they’re misleading Australia about the treatment of multiple disabilities and the current prevalence of ADHD in the NDIS, because statistically it could be anywhere between 40,000 and, more likely, up to 150,000 or more of us within the autism cohort alone. And if they audited our original access request, they would discover that many of us have in fact advised the agency that ADHD is part of our disability.
If we’ve already passed the threshold for access, we shouldn’t need another functional assessment for ADHD, because the applying to the NDIS guidelines say that multiple impairments will be considered together when assessing the impact, even if the agency is doing the exact opposite in practice.
And as head of national delivery, Mr McNaughton should either stop pretending he doesn’t know his division actively fights those [with] multiple disabilities and go looking for the tens of thousands of existing ADHD participants missing from his records. Or maybe he should just move on and let someone who understands
Catherine Walker Submission to Rural NDIS Inquiry Page 20
complex disabilities deliver an NDIS which is fit for purpose and advice on NDIS reform that is actually based on reality.
When the agency addresses the dishonesty embedded in the ADHD statistics quoted in this inquiry, then maybe we will get to productive conversations about how the NDIS can get ADHD support [right] for all of us, because the systemic NDIA bias against recognising ADHD at all does not change the reality of those who most need disability support for ADHD.” 5
So, what’s the current status of ADHD on my own file (keeping in mind, the permanence was accepted from the beginning)?
Well, remember that whole thing about PACE not being designed with the Primary Disability constraint in the CEO’s letter to the last inquiry? My recognised secondary disability is listed. But agency practices remain exactly the same.
In fact, I had made the Disability Soup argument over my loved one’s case to the very same delegate who handled my recent plan reassessment. When she started to feed me the exact line that she had fed my loved one and I last year during this planning meeting, I called her on it and cited the Decision Tree instructions. If she hadn’t figured out who she was talking to already, she surely did then. And predictably, she still didn’t add it. Here are some of the contentions stated in my request for internal review:
Impact and Contentions: The NDIA is deliberately misreporting and compromising national disability data assets, including my own personal data. This is wrong.
-
ADHD has always been reported as part of my disability and was accepted as permanent from the beginning.
-
Internal Access Decision Tree states that s24(1)(c) is to be determined on the impact of “permanent impairments combined”, not impairments in isolation.
-
I have since produced a Functional Capacity Report which acknowledges that ADHD is part of my overall disability.
-
It makes no difference to my funded supports except to emphasise the holistic view required when considering my support needs and the overall compound effect.
-
It makes every difference to me that my personal data is not falsely reported to Australia and used to further incite anti-autistic sentiment.
-
If you intend not to add ADHD to my listed disabilities, please review Deputy CEO Scott McNaughton’s evidence to the ADHD inquiry.
5 Committee Affairs References Committee Hansard, 26 September 2023, Barriers to consistent, timely and best practice assessment of attention deficit hyperactivity disorder (ADHD) and support services for people with ADHD
Catherine Walker Submission to Rural NDIS Inquiry Page 21
- If you still do not intend to add ADHD to my listed disabilities, please escalate this matter and a participant request for contact to DCEO Mr McNaughton himself. I’d like to discuss a few things.
Seriously, Mr McNaughton: You have access to my file. Drop me a line and lock in a good time for a phone call. And if not, at least do us the courtesy of admitting to what the agency is doing in practice, rather than gaslighting us on the parliamentary record while allowing this practice to continue unabated for approaching another year.
(Update: And now it has been proposed as legislation, without addressing the complete lack of procedural fairness arising from the NDIA’s systemic mishandling of requests to have all permanent impairments recognised.
Several of us warned the Committee about the Robodebt potential of this issue last time. This bill brings us closer to that scenario, but with legal cover for the harm the government will have increased scope to perpetrate on participants with multiple impairments.)
But Ehlers Danlos was approved for me eventually, right?
Yes indeed, and I confirmed it was still listed as secondary on PACE after my new plan was approved. So why on earth does the only further explanation for my Home and Living assessment provided to date state the following?
“This decision has been based on the evidence provided, with consideration of the personal care support guidelines, to determine the number of hours per day of person-to-person support you require in each domain, mobility, self-care, self management, as a result of your access met disability.”
Particularly when my comprehensive functional capacity assessment described my disability as arising from my combined impairments?
“Cat has a complex disability presentation of Autism Spectrum Disorder (ASD) Level
2, Ehlers Danlos Syndrome (EDS) and Attention Deficit Hyperactivity Disorder-
inattentive (ADHD).
Cat describes herself as an ‘Autistic Zebra’ and emphasises that the multiple diagnoses interact and negatively impact on her functional impairment.
Cat describes the conflicting traits of ASD and ADHD and how the features of each of these conditions impede her ability to perform and complete activities of daily living, self-management tasks and instrumental activities of daily living.”
Last I checked, Home and Living Operations is also under Mr McNaughton’s division. You’d think it’s pretty important for them to understand multiple disabilities, right? Especially those that have already been approved?
Update: ADHD was also denied under internal review. Including under s24(1)(b), despite permanence being acknowledged in 2022. I’m magically cured of the neurodevelopmental disability diagnosed in 1997, I guess?!! But here’s the exact wording from the technical adviser:
Catherine Walker Submission to Rural NDIS Inquiry Page 22
“Due to her diagnoses of ASD and hEDS, it is difficult to ascertain how the Applicant’s diagnosis of ADHD alone, has substantially reduced her functional capacity. As such, it is unlikely that the addition of a secondary disability for ADHD in the context of a primary listed disability of ASD, will alter support needs significantly for the participant.”
Oh, for crying out loud…
Am I meant to take on trust that Compliance will never try to “ascertain” whether various purchased supports are ADHD or autism-related, while this decision not only is contrary to internal guidance and the Access OG but permits the NDIA to continue compromising the integrity of Australian disability data – using my personal records?!
I don’t think so. Give me a call, DCEO McNaughton. Patch the Scheme Actuary in.
Image Description (ChatGPT-assisted): The image is a meme featuring a still from the movie “Mean Girls,” specifically the scene where the character Regina George is having a conversation in a high school cafeteria. The top text of the meme reads “So you agree…,” the text continuing below with “…the impacts of my multiple, intersecting disabilities are inseparable, exactly as I’ve said since 2022?”
This text is a satirical take on a response from the NDIA, suggesting that the participant has long argued for the interconnectedness of their disabilities, and it seems that the NDIA is now inadvertently agreeing with this perspective in their justification for refusing to recognise how ADHD impacts the participant’s functional capacity when considered together with the collective impacts of ASD and hEDS. The meme uses humour and sarcasm to point out the perceived inconsistency in the NDIA’s reasoning.
Catherine Walker Submission to Rural NDIS Inquiry Page 23
Report Card: Effectiveness of the NDIA in serving rural, regional and remote participants
I think we can agree it’s fair for me to call this a hard “Fail.”
Rural participant choice and control over NDIS services and supports and relationship to obligations under Article 20 of the UNCRPD
Clearly there has been no legitimate consideration of my choice and control, except to use it as a shield from accountability and duty of care, as demonstrated by the planning delegate’s line manager insisting that I could use my Core supports flexibly to mitigate the risks to my safety. It also is not any real choice when I am forced to choose autonomy over safety in the absence of appropriate mobility AT that considers “all aspects of mobility” arising from the intersection of my disabilities with each other and my home environment.
However, I also want to zero in on the relationship between Choice and Control under the NDIS Act, and the following extract from the UN’s List of illustrative indicators on personal mobility,6 published as a guide for assessing compliance with Article 20 of the UNCRPD, which is particularly noteworthy in examining the NDIA’s handling of my situation, as are the references noted and inserted underneath (inset):
Right to personal mobility
“20.1 Legislation enacted to recognize and ensure the right of persons with disabilities to personal mobility, including by ensuring access to mobility, vision, hearing and communication, devices and assistive technologiesi of the individual’s choice and tailored to their individual needs.”
i This includes all assistive technology and devices (e.g. wheelchairs, glasses, white canes and smartphones) that support persons with disability to move freely. See Special Rapporteur on the rights of persons with disabilities’ Factsheet on assistive devices and technologies, also A/HRC/34/58, paras 14, 80-81.
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A variety of persons with disabilities may require support to ensure their personal mobility with the greatest possible independence, including through mobility aids, devices and assistive technologies and forms of live assistance and intermediaries. In particular, persons with disabilities who live in rural and remote areas face significant challenges in accessing different forms of mobility support, which significantly limits their access to such basic services as health care and education.
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Article 20 of the Convention requires States to facilitate the personal mobility of persons with disabilities in the manner and at the time of their choice, facilitate their access to assistive technologies and forms of mobility assistance and intermediaries, and provide training in mobility skills to persons with disabilities and staff working with them. It also encourages
6 Article 20: List of illustrative indicators on personal mobility https://www.ohchr.org/sites/default/files/article-20-indicators-en.pdf
Catherine Walker Submission to Rural NDIS Inquiry Page 24
entities that produce mobility aids, devices and assistive technologies to take into account all aspects of mobility for persons with disabilities…”
Update: I’ve been having this argument with the NDIA for months, and what do I find in the proposed legislation? Mobility support is defined according to Article 20 (though omitting the “all aspects of mobility” part). Funny, that.
Unpacking what “all aspects of mobility” means for planning and safeguarding when multiple disabilities collide with rural environments
There is a clear tendency across the NDIA to consider mobility primarily through the lens of getting from Point A to Point B on legs or wheels, or transfers, and not much else. But, like the autism spectrum, mobility is not a linear spectrum. It is much more like a Venn diagram of various overlapping colour wheels. And rural environments have significant influence over that spectrum for me, particularly when considering orthostatic intolerance, thermoregulation, hydration and interoception difficulties, repetitive strain, executive dysfunction, and more.
The cognitive load of planning to survive all these things, especially when I am cognitively impaired when on my feet or in warm environments, is overwhelming. All of the steps involved in planning are already an exhausting conscious effort for me every day, even for the most basic indoor routines.
But it is impossible to plan for every scenario or to mitigate various risks without appropriate equipment to reduce mental and physical burdens, optimise my function and enhance my capacity to safeguard myself proactively. Cognitive loads interacting with adverse environments and physical compromise make me extremely unsafe and make attempts at self-safeguarding futile in the absence of a mobility aid that considers “all aspects of mobility” as the phrase applies to me.
My OT understood this immediately. The NDIA refuses to. But hey, it’s only my life.
Availability and accessibility of NDIS services and supports, including safety impact of gaps in service availability
Safeguarding means ensuring I can keep myself safe if I cannot access support on a given day, or all of that day. I have been exposed to this vulnerability repeatedly since the Day in the Life example despite all efforts to address the aspects within my control.
If I included every living-rural-while-disabled risk anecdote since that day, this submission would be double the length. One of these was the reason that I could not meet the original extended due date. I’ve been suffering the consequences of rolling increased post-exertional symptoms and musculoskeletal whack-a-mole from exceeding my safe limits constantly. The impact on cognition has been severe.
The short answer is that the NDIA cannot rely on ‘flexible’ Core supports in thin markets, and especially as a safeguarding cure-all to mitigate risks. I would welcome the opportunity to further explore what safeguarding looks like for me on these days as a witness.
Catherine Walker Submission to Rural NDIS Inquiry Page 25
Cost and durability of those services and supports
Have I mentioned, yet, that the universal design mobility AT is half the price of the disability-specific rural power chair the NDIA routinely funds for participants like me?
I know, right?!
But for other costs, provider travel is an important one. This was grossly underfunded for physiotherapy, as a participant who requires home visits as a direct result of my disabilities, and sufficient frequency to permit monitoring of subtle neuromuscular differences to enable me to progress safely and without further injury. Guess what that predisposes me to? More injuries when exceeding my safe limits outside!
Complaints handling and safeguarding experience of rural participants
See the GPT intro summarising all the prior attempts to escalate my overdue change of circumstances, or at least the AT request. See the reference to the planning delegate shutting down escalation pathways and closure of the complaint from Minister Shorten’s office. See the choice the internal reviewer gave me: Relinquish my rights to full external review and risk the expedited AT internal review being denied anyway. See the lengths I had to go to, just to have my internal review acknowledged in the system, including the phone call mentioned earlier, after the delegate’s line manager refused to help locate it (no wrong door, hey?):
Dear Rebecca [Falkingham],
I know you’re busy with many headaches, but if your assistant is reading these, you might want to know that the apologetic NCC staffer I’m on the phone with currently has now been trying to transfer me to their team leader who has the authorisation to escalate risks appropriately for almost 70 minutes.
I’ve pulled every other escalation lever my support coordinator and I have. I’ve followed the proper processes and submitted my urgent priority internal review request on Sunday night, with 6 documents of supporting evidence.
The OG says someone in my high risk position is meant to be contacted within 48 hours. It still hasn’t even been processed into the system.
We’ve had fires this week, and another nasty day forecast for Tuesday. When I get off the phone, it’ll be to get on that quad bike again. The risk of death or injury is ongoing, and as is well established by the OT evidence, the risk is disability-related and your responsibility…
We definitely do need to talk about this safeguarding gap more, but right now, I need you to take responsibility for it in the way your delegates have refused to, to address my safety, so we can actually get to that systemic conversation.
The delegate’s line manager essentially telling me to tell my support coordinator to wave a magic wand just doesn’t cut it.
Here’s the call log, by the end of which it had successfully been entered into the system. So much for DCEO McNaughton’s assurances at Estimates that the current backlog is being
Catherine Walker Submission to Rural NDIS Inquiry Page 26
triaged when subject lines indicating level and type of risk are sitting in the Enquiries queue. I had called the NCC the day before this. I had spoken to the planning delegate’s line manager earlier that day and asked her to assist. I didn’t dare move the entire time lest the call drop out. The whole time, I was terrified of saying the wrong thing to the Team Leader and being shut down as unreasonably persistent. He ultimately assessed it as Extreme on the risk matrix.
ChatGPT Image Description: The image displays a call log screen from a mobile phone. The top part of the screen shows the name “National Disability Insurance Scheme” followed by the phone number 1800 800 110. Below this is an icon indicating an outgoing call, with a timestamp starting at 4:56 pm and the call duration being “3 hours 9 minutes and 58 seconds.”
And yes, I got on the quad bike afterwards, as it was getting dark. It’s much harder to see the bumps then, even with high-beams.
Impact of NDIA practice, policy and behaviour on rural participant safety, capacity-building, social and economic participation and realisation of broader
NDIS Act objectives
It’s hard to pull this one apart, and much of this is addressed in “Final thoughts on (e) any other related matters.” But, ultimately, the NDIA has deliberately and knowingly left me at risk without critical AT, using justifications that have been comprehensively refuted with clinical evidence they refuse to respond to.
They have further made me unsafe by consuming so much of my energy and focus, leaving me even less to navigate the challenges of each day with.
This is dangerous.
This is reckless.
This should be criminal.
In the meantime, all these other pretty little objectives slip further out of reach. Please see further discussion of this in the final section and revisit my submissions to the Capability and Culture inquiry through the lens of the rural issues raised here for further evidence.
I also wish to comment briefly on disrespect. It’s harder to prove manipulative, gaslighting or other inappropriate communications when these examples are often less concrete. But here’s a concrete one.
Catherine Walker Submission to Rural NDIS Inquiry Page 27
When the internal review officer argued that the universal design SSV also had not been trialed on my property, and therefore could not be deemed safe and suitable, I reminded her that my support coordinator had explicitly been advised a showroom trial would be sufficient by the delegate processing my case earlier in December.
Her response, after a very long pause?
“Whatever.”
I kid you not. My support worker can verify this.
Safety impact of NDIA reluctance to fund fit-for-purpose universal design technology for rural participants
The safety impact of the current impasse is being forced to choose between relinquishing autonomy and independence—while still exposing myself to lesser injuries and cumulative damage—or multiple-times-daily risk of death or life-changing, serious injury. That’s it. That’s the impact.
Catherine Walker Submission to Rural NDIS Inquiry Page 28
Final thoughts on (e) “any other related matters.”
The NDIA is systemically breaching the NDIS Act and its legislated role in giving rise to Australia’s human rights obligations under the UNCRPD
The following more recent contentions on the lawfulness and ethics of business-as-usual practices in NDIA service delivery have already been shared with the agency. I share them here for public accountability, particularly in the context of evidence given to the previous inquiry.
Short plan durations prevent me from focusing on achieving my goals, cause inescapable stress, deny me any chance for economic participation, and discriminate against my inherent autistic traits
The stress of a 12-month plan is already causing me harm and preventing me from engaging in other activities, compounded by the unnecessary stress of an internal review that could have been avoided if expert advice was followed and the delegate had listened to what I actually needed during the almost-3 hour planning meeting.
This need is directly related to my disability and failure to accommodate it amounts to discrimination: I experience extreme difficulty transitioning between tasks and changing focus as a direct result of autistic monotropic traits. I require the accommodation of a three-year plan as a reasonable adjustment. There are no grounds for denying this which would outweigh the harm failing to provide this accommodation would cause me… Please just leave me in peace to pursue my stated goals.
And:
How has the decision to approve this statement of participant supports affected you?
Breaches of NDIS Act
Breach of Section 3(1)(a): “…give effect to Australia’s obligations under the Convention on the Rights of Persons with Disabilities…”
See ‘Breaches of United Nations Convention on the Rights of Persons with Disabilities’ under the contested SSV AT Decision.
(Referring to Articles 2, 19, 20.)
Breach of Section 4(11)(a): “Reasonable and necessary supports for people with disability should: support people with disability to pursue their goals and maximise their independence;”
The plan approved, particularly the denial of funding for [accessible housing needs] and of the urgently needed mobility AT (SSV AT decision) directly limits my independence and increases my dependence on other supports
Catherine Walker Submission to Rural NDIS Inquiry Page 29
which have already been underfunded. I cannot achieve my goals with the plan approved, I cannot make sufficient progress towards them in a twelve month plan even if the contested supports had been approved, and the plan approved has absolutely no regard whatsoever for the type of support I need to facilitate conservation of the precious little energy and focus left for working towards social and economic participation after meeting my basic needs.
This plan works against the overarching goals of the NDIS Act, and I am paying the price personally.
This is a plan that says: “Actually, the NDIA wants to keep you unemployed, isolated, and trapped in endless back-and-forth with us rather than allow you to benefit from genuine capacity building so you can give back to Australia through increased social and economic participation.”
I just don’t get it. I really don’t. All I want is to be left in peace with the supports I need to be safe, independent, and with enough headspace and energy leftover to improve my social and economic participation. Why doesn’t the NDIA want to give me a shot at being able to pay the taxes that fund the NDIS, or being able to pay off my student debt?
Breaches of Section 31 ‘Principles relating to plans’: “…maximise the choice and independence of the participant” and “facilitate tailored and flexible responses to the individual goals and needs of the participant.”
This is beautifully – tragically so, if anything happens to me – illustrated by the denial of the universal design SSV as the most appropriate rural mobility aid (the SSV AT Decision). I look forward to the NDIA’s justifications for failing to facilitate tailored and flexible responses to my individual needs in direct conflict with expert advice and your “international obligations” under the UNCRPD, as the CEO just referenced them, should this proceed to external review. If something happens to me before it gets that far, then I hope you have ensured you are willing to explain your justifications to my family and the coroner.
And so, once again, we come back to some of the more troubling themes addressed in my submissions to the Capability and Culture inquiry…
The NDIA is actively undermining my ability to pursue increased economic participation and genuine capacity building
Like I said earlier, it’s refreshing that the NDIA is finally paying for my advice a few hours a month, but it is a drop in the ocean, and it doesn’t change the impact of the unreasonable administrative burden I experience as a participant, particularly when forced into protracted review processes as a direct result of overruling funded expert evidence.
Catherine Walker Submission to Rural NDIS Inquiry Page 30
It’s exactly as I put it in the extract from my grounds for internal review, above: Why is the NDIA so determined to sabotage my genuine attempts at capacity-building and making economic participation accessible?
In fact, I first called this out way back in my November 2022 testimony:
“Even if my efforts to date have been successful, I want to know why the agency responsible for capacity building and eliminating barriers is so intent on further draining [mine] and creating even more barriers.
I have a right to choice, control and autonomy in all NDIS matters with reasonable accommodations and without being pushed closer to my known risk factors.”
Committee Hansard, Capability and Culture of the NDIA, 17 November 2022 (p. 39)
To add insult to injury, the internal review officer not only denied my request for a three-year plan again on internal review but did so on the grounds it would not be “effective and beneficial.”
Yes, Committee: The official decision letter says it is more effective and beneficial for me to be forced into another 12-month plan, despite the stated risk of substantial psychological harm and suicidal ideation in my grounds for review.
They didn’t quote that part, of course, but I read it out to them again on the phone and got nothing but evasion and deflection for my trouble. Cool and normal!
When I asked one of my other occasional supports for some feedback on the early drafts of this submission, I showed them Submission 86.1 for some additional background context to the events and impacts they had personally witnessed. Specifically, the “consuming my life” and “The NDIA takes more than it gives, making us pay far too high a price for the supports we receive” parts.7
Their observations?
That it must be overwhelming. That the people at the top don’t care and are not giving me due consideration of my specific circumstances on a case-by-case basis. That all of this is completely out of my control and should not be my problem, but I have to keep fighting because it’s the only chance I have of getting them to listen; yet still am not actually being heard. That it is putting immense pressure on me and making me worse when the agency is meant to be doing the opposite.
How many times do I have to say that this is not my job?
The NDIA’s conduct, once again, is indistinguishable from coercive control
I briefly touched on this in both Submission 86.1 and 86.2 to the previous inquiry and had already outlined this section when I saw the Attorney General’s new fact sheets on coercive control. Conveniently, these demonstrate some very concrete examples!
7 Supplementary Submission 86.1, Capability and Culture of the NDIA, pp. 12-14
Catherine Walker Submission to Rural NDIS Inquiry Page 31
Screenshot of Understanding how coercive control can affect people with disability fact sheet8
See: The widespread impacts of the current rural mobility aid impasse, despite OT evidence.
Screenshot of Understanding coercive control and economic and financial abuse fact sheet9
See: Everything I said about the economic impacts in Submission 86.1. Add countless missed advisory, PhD and other job opportunities, and whatever my HELP debt is indexed this year (it was almost $3000 last year).
8 Understanding how coercive control can affect people with disability fact sheet (Attorney General’s Department, 5 March 2024) https://www.ag.gov.au/families-and-marriage/publications/understanding-how-coercive-control-can-affect-people-disability
9 Understanding coercive control and economic and financial abuse fact sheet (Attorney General’s Department, 5 March 2024) https://www.ag.gov.au/families-and-marriage/publications/understanding-coercive-control-and-economic-and-financial-abuse
Catherine Walker Submission to Rural NDIS Inquiry Page 32
The epistemic exploitation never ends
In my final submission10 to the Capability and Culture of the NDIA inquiry, I touched on epistemic exploitation in my engagement with the NDIS. As Dunne and Kotsonis explain:
“Epistemic exploitation occurs when privileged persons compel marginalized knowers to educate them [and others] about the nature of their oppression…
Though some of these requests to ‘educate’ or ‘learn more’ masquerade as seemingly virtuous or innocuous epistemic inquiries, privileged persons underestimate or remain ignorant of secondary harms which stem from internalized epistemic obligations, oppressive double binds, and attendant emotional burdens oppressed knowers carry in relation to the ever-present possibility of ameliorating oppressor mindsets.”
Remember what I said about how hard I tried to meet the planning delegate halfway, despite my low expectations based on the history with my Loved One’s case? Only to be deliberately gaslit in the implementation meeting to evade responsibility?
I tried just as hard with the internal review officer, through the endless hours of tactics seemingly designed to try to confuse and entrap me, not only into relinquishing my external review rights to other contested matters, but also into additional changes of circumstances, or on-the-spot answers to out of context questions that had been addressed (repeatedly) in the $11,500 of funded expert reports. Need I point out how problematic the last bit is in verbal communication with an autistic participant?
But still, I did the arduous and demoralising ‘mask-my-autistic-a**-off and don’t-fall-into-any traps’ dance, for hours. And hours. And hours. While still making myself vulnerable but knowing full well it would probably make no difference, and that anything I said could be taken out of context and used against me. If the planning meeting was a charade, the internal review was a full-on stage production. What was the point when she clearly never intended to alter any part of the decision? Not even the plan duration as a critical reasonable accommodation and protection for my mental health?!
Committee, telling our stories repeatedly is exhausting. You all know this. Everybody knows this. It’s especially cruel when we are forced to do so in good faith, knowing we will likely have it thrown back in our faces. It’s even more exhausting when autistic communication with the NDIA is inherently traumatic and used against us, while masking comes at the cost of well-evidenced harms to autistic mental health and the exhaustion of trying to engage in neurotypically acceptable ways to have our basic needs met.
The emotional and intellectual labour of engaging in this fruitless internal review has burnt me out so hard that I’m rushing to complete this on Easter Sunday to meet the extended due date. I simply have not been able to comprehend what I had already written, let alone articulate the unfinished parts. I held off submitting in the hopes I would have good news and positive feedback to share. So much for that.
10 Supplementary Submission 86.2, Capability and Culture of the NDIA (p. 10)
Catherine Walker Submission to Rural NDIS Inquiry Page 33
Now, I must get straight to preparing for external review, while trying to get a submission on the proposed legislative changes AND the provider registration taskforce in by the last week of April, with the most important energy conservation strategy—being the most appropriate mobility aid according to my OT and the UNCRPD—denied, support coordination reduced, and with no ability to mitigate the risks whatsoever.
I’m so tired, Committee. So very tired.
And I feel like that’s the ultimate strategy: Keep them too burnt out to fight for their rights. Kick the ball further down the road, and trust that they’ll break before they catch up and hurl it back at the NDIA.
Thankfully, I have a few good people in my corner.
But I should be writing PhD scholarship applications, not a Statement of Facts, Issues and Contentions, or more submissions that come back to so many of the same old problems the NDIA refuses to fix. Especially by now, almost two years into my “participant journey.”
When does it end?
When do I get to increase my social and economic participation?
If the worst should happen…
The last thing I want to say about this saga for the moment is that, in the event of my (entirely predictable and avoidable) death, I would want this submission forwarded to the coroner and give my consent for anyone with access to send the original copy not protected by parliamentary privilege. I would ask the Committee to also authorise its use in such circumstances.
Let’s hope it never comes to that, because the day may yet come when I write the good news submission filled with positive developments I so badly want to…
Catherine Walker Submission to Rural NDIS Inquiry Page 34