NDIS Joint Standing Committee Inquiry

Submission by Catherine Walker

NDIS Participant

Introduction

It has now been 135 days since I was granted access to the NDIS, and I still haven’t had my planning meeting. The reasons for that paint a damning picture of the NDIA’s Capability and Culture, particularly as it impacts autistic adults and anyone with multiple interacting impairments. I’ve already said most of this to the NDIA. I’m speaking to you because either they refuse to listen, or are being instructed to stonewall me by their leadership teams. I’m hoping you will, because this doesn’t just impact me. While I may only have time for my personal account focusing on the impact and not my recommendations, I invite you all to read them, because these ten recommendations both illustrate critical Capability and Culture problems in the context of their wider impacts, and offer clear, systemic, actionable solutions.

My name is Cat, and I am an Autistic Zebra. My brain and my connective tissue both work differently, and my disabilities form a more challenging spectrum of their own. This drives the way I experience the world and my every interaction with it. Autistic because this is who I am, and Zebra—the symbol for Ehlers-Danlos Syndrome (EDS)—because my stripes connect me to my disability community and remind me of the need to care for my compromised body even when my needs are invisible. Autistic Zebra, because acknowledging the nature of this Autism-EDS interplay honours their impact on me and the way this manifests. If you’ve heard that EDS is just bendy joints, think again: This is a complex congenital malformation syndrome that impacts every system of the body, because collagen is everywhere, and research shows that neurodivergence may not only be developmentally linked to EDS, but presents stronger links between the expression of hypermobility, pain and autonomic dysfunction.1 In my case, all of this is further compounded by severe ADHD. I have said from the beginning that understanding this relationship must be the starting point for everyone involved in my NDIS journey. The problem is, EDS was not approved on my file when I was granted access for Level 2 Autism on the 5th of July, with no request for further information. Want to trigger an autistic meltdown? Tell them this two hours before their scheduled planning meeting, that it’ll be focused on autism supports only, and watch

them implode when emergency legal advice and advocacy is unavailable. That was the 21st of July, and I’ve desperately been trying to resolve this ever since, namely, the recognition of EDS2 as causing permanent impairment, BEFORE my planning meeting. The NDIA’s absolute refusal to meet me where I am, with multiple disabilities I was born with, is why I am speaking to you now.

I’ve been unable to work for approaching five years, after taking the maximum time to complete the Masters I wasn’t sure I would survive. I’ve only ever worked full time while living with my parents. I’ve been iced out of casual jobs for undiagnosed autistic traits like “resting bitch face” and not being bubbly and social enough. I wasn’t good enough with people to effectively build and sustain a client base, despite my constant masking and my skills rehabilitating horses. I kept practicing equine bodywork as long as I could for my most loyal clients, but it was undiagnosed EDS on top of autism impacts that made me stop altogether. I have been drowning for years despite knowing what I am capable of when everything aligns.

I have so many positive traits to contribute to the world, and I want to build a life with fewer barriers to make that possible. I WANT to be a success story.

But it seems like the agency just wants to wait me out and bully me into compliance with their broken, discriminatory processes and legally questionable application of the NDIS Act and Rules. They want me to shut up and accept the “autism supports”-shaped box and identity they have predetermined for me, in the desperate hope complying will lead to a successful request to add EDS to my file (but with no guarantee or timely information to support this – every bit of information I’ve received has been delayed and obstructed), and in the meantime, to draw a hard line between “autism supports” and “EDS supports” as if I can be selectively autistic and cut myself in half; as if being autistic doesn’t fundamentally influence every aspect of my lived experience, including EDS and my ability to manage the functional impacts.

They doubled down after multiple ministerial representations, ignoring escalated APS Code of Conduct matters and other requested outcomes. Their strategy is to ignore me and simply repeat the “can’t be changed until your planning meeting” line, now claiming the system won’t allow another impairment to be added beforehand. Which is odd, considering they already reviewed it three times before actually providing enough information for my doctor to respond.

I uploaded a new letter from my doctor on the 7th of October, the day after finally hearing from the access assessor (whose justifications do not appear on the internal access decision records received under FOI, only a one-line dismissal which doesn’t even name EDS). I re- uploaded it with a Change of Circumstances form on the 26th October. They have had further evidence for almost six weeks and now refuse to consider it, after at least two of the prior reviews did not look at the correct original evidence. They are punishing me for their administrative failures, and their excuses just don’t add up.

ADHD also was not recognised, but mirrors my autism support needs.

What is most extraordinary

What is most extraordinary is that this has nothing to do with the quanta of funded supports, only the conditions listed on file. But because the current planning operational guideline deviates from the Act and Rules to change the legislated wording from the overall concept of “disability”, to state that only supports for impairments meeting the access criteria will be funded, this leaves participants open to Robodebt 2.0 if ALL of their impairments are not listed, for supports which are perfectly reasonable under the Act and related court decisions. They aren’t just completely dismissing the common reality of interacting impairments, but are prejudicing audit procedures against anyone with inseparable functional impacts even if we’ve already met the access threshold.

Unfortunately for the agency, this particular autistic has a special interest in research.

Nonetheless, I resent every hour these unpaid literature reviews bleed from my limited capacity while NDIA employees draw generous salaries to ignore scientific evidence and professional recommendations, and I want to see systemic change for my efforts.

The impacts of NDIA capability and culture on the experiences of people with disability and NDIS participants trying to access information, support and services from the agency (CONTENT WARNING)

Now you have my backstory, I want to start with the impacts, because when you see how simple most solutions I recommend are, you’ll see just how toxic and broken the NDIA is, and how casually they harm participants and their families.

Suicidal ideation and thoughts of self-harm have thankfully been a rare occurrence in my life. Yet, I have approached my husband three times recently with such thoughts (and reported it to my doctor), as a direct result of the way the agency has handled my complaints and efforts to have EDS recognised so that I CAN proceed to a planning meeting without being asked to take a scalpel to my lived experience until I fit into the agency’s offensively narrow little autism box.

Newsflash: That isn’t how autism works, or EDS for that matter. It’s hard to put into words just how distressing this expectation is after going to so much effort to try and articulate all the complex interactions; after waiting so long to have three decades of undiagnosed hell validated; after realising that all the best parts of me come from my Autistic Zebra perspective on the world, and seeking to reimagine a life where that brings value to others

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to a role I can physically and mentally sustain. It was already distressing on the 21st of July, when I still had some faith this was an error and not a deliberate obstruction.

But what bothers me more is how easily actionable those thoughts might be for someone else without my one constant practical and emotional support, without the relative financial protection he has provided, without my white privilege, without a GP who has fiercely advocated for me for the first time in my life.

Autistic women are “13 times more likely to die by suicide than women who are not autistic.”5 The fact the agency can push someone in my isolated but nonetheless privileged shoes to suicidal ideation over what should be a minor administrative detail (and certainly never tied to a plan) — along with the fact no reviewable decision pathway exists because the Act doesn’t provide for my situation once an individual has passed the access threshold — should raise serious questions about the legality of the policies in use and the ethics of all in leadership positions who have perpetuated this dangerous culture at the expense of the people they were hired to help, when we are already at higher risk.6 But I fear the agency’s only response to this disclosure will be to inflict inappropriate behavioural interventions on me, rather than addressing their own behaviour.

My decision to fight the agency on their nonsensical refusal to provide a resolution pathway prior to my planning meeting, for a problem they created, has come at an enormous personal cost, but I also felt that if I could fight it, I must, because I know there are countless other participants who are not in a position to hold the agency accountable, and have no real choice except to comply with their abusive practices.

But even if my efforts to date had 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.

My husband has been carrying an even heavier load when the burden on him was a significant reason for applying; yet, I recently discovered through FOI that the access assessor ticked the does-not-have-a-carer box despite claiming to read his Carer Impact Statement. I am not just angry about that because such errors influence funded supports; I am absolutely furious that my husband’s lived experience as a carer and the pressures he has been under were so casually dismissed, when his mental health has suffered as much as mine juggling his roles of sole earner AND sole day-to-day informal support. To agency staff who treat us as numbers, KPIs and preconceived profiles of diagnoses: How dare you.

To paraphrase the new NDIA chair: EVERY role in the NDIA is the most important role, because of the huge impact your work — sometimes, just minutes of it — has on our lives.

The capability and culture of the NDIA, with reference to operational processes and procedures, and nature of staff employment

The records I have show the access assessor seemingly considered 132 pages of compiled evidence and dismissed everything except the automatic autism approval, just 23 minutes into their workday.

Most matters addressing the first term of reference are covered in my recommendations, but this one is especially illustrative now you have the context for my impasse.

This comes directly from a consultation paper submitted by Occupational Therapy Australia and published on the NDIS website7 which chose EDS as the example to assess permanence per the legislative criteria via the following proposed questions:

Is there a cure for the condition?
Will surgery resolve the condition?
Is there a medication or treatment which would remedy the impairment?
Is this a reasonable treatment expectation? Is it available and affordable for all Australians?
Will any treatment improve the functional capacity of the individual to the point of being unimpaired?
What is the expected trajectory of this type of condition/disability?

Example — Ehlers-Danlos Syndrome

a. There is no cure. b. Surgery may be required for the management of joint dislocation but will not remove the impairment; it will simply make the joint less painful and more stable for a short period of time. c. Medication and treatments are supportive only; they are not curative or likely to remedy the impairment. d. Treatment is not widely accessible or affordable.e. There are no evidence-based treatments to cure or substantially treat the type of condition/disability. Any intervention is supportive and capacity building; they are unlikely to improve the condition to the point of no longer being impaired.

f. Disability often worsens with age due to the accumulation of injuries and joint instability. Pain adds to the disability burden and increases functional impairment.

  Based on these questions, it is clear that a participant with Ehlers-Danlos Syndrome
     is likely to experience permanent and lifelong disability.

As I told the agency when I quoted it to them in my most recent complaint, this is exactly what my treating professional advised at the time of my access request, only the NDIA had already heard it from the peak body!

That complaint, like my first, was closed prematurely, to meet the Participant Service Guarantee deadline, without acknowledging this information or my other requested outcomes and concerns. They are misrepresenting these statistics and KPIs.

I have requested anonymised data for all access and additional impairment requests denying EDS on permanence since the agency published this consultation paper in February 2021, but am yet to receive the outcome. Unless every form received in this period is checked, this figure will under-represent the true numbers, because some participants may not be aware EDS is not listed, and for others like me, it was dismissed without ever recording “Ehlers Danlos” on my file.

Such maladministration, combined with the whole “Primary Disability” farce, compromises disability-related data and research for the entire Australian population (see Recommendation 3).

                   Recommendation 1

IMMEDIATE addition of Ehlers Danlos Syndrome (EDS) and Hypermobility Spectrum Disorder (HSD) to List B under “Congenital conditions – cases where malformations cannot be corrected by surgery or other treatment and result in permanent impairment but with variable severity“

This brings agency policy in line with ICD coding, the vast and growing evidence that these incurable, heritable disorders of the connective tissue fundamentally impact the entire body and require lifelong management, and the example already provided to the agency by the peak occupational therapy body, unequivocally demonstrating that EDS meets Section 24(1)[b] for anyone diagnosed with it. This still requires applicants to meet the substantial functional impact threshold, but acknowledges that there is no remedy whatsoever for the underlying connective tissue impairments, and no lasting remedy or prevention of the various secondary manifestations they cause at an individual level; only protective and palliative care and support. Unless the NDIA is sitting on a groundbreaking scientific discovery, they have no legal basis to deny the permanence of the underlying, systemic structural impairment of EDS or HSD for any individual.

Recommendation 2

Automatic acceptance of Ehlers Danlos Syndrome or HSD for any autistic participant who has already met the threshold for access and provides evidence of formal EDS or HSD diagnosis, and screening of all other autistic participants for EDS and HSD before approval of any Behaviour Support or Restrictive Practice interventions.

The NDIA’s continued reluctance to acknowledge that many autistic individuals have comorbid physical impairments — despite internal documents noting the association between autism and EDS — presents an ongoing risk of NDIA-perpetrated abuse and human rights violations. This is underscored by the focus on behaviour in autism supports at every level from LAC assumptions to IT processes, and the growing body of research linking neurodivergence, connective tissue abnormalities, pain and dysautonomia to shared developmental origins, differences in processing, and complex, widespread impacts on quality of life, function and participation outcomes. These are intrinsically linked disability support needs that MUST be identified and addressed before the use of behavioural strategies and certainly before ever using restrictive practices for what might be pain or autonomic dysfunction-induced distress.

Recommendation 3

The agency must urgently update TSPs and “primary disability” categories to dispel the dangerous and abusive myth that only autism is relevant for autistic participants and the pervasive belief that only “autism supports” are reasonable and necessary.

Physical comorbidities such as EDS are more common in us than anyone else. Outside known autism comorbidities, it is critical that policies and supports reflect the significant impact and interactions of autism with any physical condition, permanent or otherwise, and that autism in the presence of any comorbidity complicates the whole picture and creates different or additional support needs, often unique to the individual’s circumstances.

Failing to recognise this need is cruel to anyone in the “autism plus” category, and punishes those with the greatest communication difficulties most severely of all. Failing to capture these statistics accurately by perpetuating the “Autism as primary disability” myth silences and erases us, and compromises ALL disability-related data and research for the entire Australian population.

Recommendation 4

All streaming factors, minus their weighting, should be transparently listed as such on the Access Request Form, to ensure correct capture and appropriate support for the planning process, and avoid outright misrepresentation. Further, all participants granted access for Autism under List A must automatically be streamed to Intensive, in line with the support needs contained in the diagnostic criteria.

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It is unacceptable that these are not being recorded correctly, and are based on information in the ARF that does not directly align to the actual factors, or which is readily missed in other evidence. Likewise, applicants must have Choice and Control over whether they disclose these and when, due to the sensitive nature of some factors.

Despite the stance of the FOI branch, publishing these has no bearing on the quanta of funded supports, as access to support coordination is not determined until the planning process, TSPs are made for adjusting, and participants never get to see them anyway. An older version is already in the public domain, and they cannot have materially changed if the same categories are in use.

Failure to include these on the ARF, failure to capture them at access even when noted in other evidence, and failure to amend records and associated streaming when this evidence is pointed out, denies participants like myself access to reasonable communication accommodations and extra time for the planning process itself (don’t be fooled by my scripted speech; this has been a HUGE issue in my life as outlined in Appendix 1). This is a human rights violation as defined under Article 2 of the CRPD, in the agency responsible for upholding Australia’s commitment to the CRPD.

Recommendation 5

All planning questions must be provided in writing or in the participant’s preferred format for accessibility, whenever requested, and all participants must be provided access to a draft copy of the full plan including the participant’s statement, goals, and all answers recorded.

It is unacceptable that planners are changing goals and recording incorrect information or drawing erroneous conclusions which are then perpetuated through our records. It is explicitly against the law as defined in the NDIS Act to change statements prepared BY the participant. Likewise, it is unacceptable that we are not given the opportunity to fact-check, clarify or challenge any changes or omissions from the support needs discussed before these are submitted for final approval.

This can easily be achieved by eliminating the one-way document section in the portal so that we can download any document we have previously submitted and those uploaded by others, such as said draft plans.

Recommendation 6

Transparent access to all departments (including phone and email) and information.

This can be provided using the existing employee ID codes without publishing full names. The current system is an appalling barrier for everybody, but it is an unacceptable accessibility issue for self-represented autistic participants.

The contact centre must also be granted authority to transfer us to any department

Recommendation 7

All technical advice relied upon for internal decision-making processes must be transparently published on the NDIS website, including all processes for assessing the disability requirements for various conditions.

The current approach, with its inconsistent application and frequently obstructive approach to accessing further information justifying a decision, is an outrageous waste of public resources leading to unnecessary administrative and financial burdens, appeals and AAT cases. The information relied upon must be open to scrutiny and correction.

Recommendation 8

Immediate direction to all delegates and partners to cease denying “sensory” intervention supports for autistic participants and any other participant requiring additional sensory input as a result of or to live well with their disabilities.

(See also Occupational Therapy Australia’s Capability & Culture submission)

It is unconscionable that critical coping tools in any kind of “sensory” category are being denied for conditions in which sensory impacts are a huge feature (including both autism and EDS), when sensory-focused supports are essential for emotional regulation strategies AND physical protection or compensation for inadequate sensorimotor control. I need both, as do many other adults AND children. Blocking access permits unnecessary restrictive practices per OTA.

Recommendation 9

Autistic adults need a stronger voice in all aspects of the NDIA, including autistic-led co-design, not co-design by proxy.

While the lived experience of parents and carers of autistic children and adults is valuable advocacy, this is not the same as lived experience of an autistic person, unless they are also autistic. Individuals experienced in “working with autism” is not the same as our experience. Co-design for autistic participants, particularly adults, means autistic-led. We are a huge number and deserve the opportunity to define our own support needs, rather than be forced into little boxes built from assumptions. We cannot do this if our perspectives are constantly ignored or overridden. Make it happen, and make it accessible for all of us, however we communicate.

And then, hire more autistic adults. Appoint us to boards and committees. Adapt roles to

include us, rather than excluding us with discriminatory criteria (see: shared/open-plan offices with no fully remote option; interpersonal excellence for roles otherwise perfectly suited to an autistic person’s skills and experience).

                   Recommendation 10

Update the “Improved Relationships” capacity building category to provide disability- terated relationship counselling along with other therapies, AT support and capacity building relevant to the participant’s desired “Improved Relationship” outcomes.

With the exception of sustaining informal supports, the focus of existing categories is disgustingly discriminatory, largely targeted at autistic participants based on offensive and discriminatory assumptions, leaves no room to support the impact of other disabilities on relationships — including marriage and intimate relationships — and focuses on everyone else’s needs and not the participant’s.

This may come as a surprise to you, but: Sex is an ADL! Autistic people get married! Sometimes to neurotypicals, which calls for highly specialised, neuro-affirming relationship counselling as a disability support! Autistic people have sex and experience all kinds of disability impacts beyond learning about consent and protection, including figuring out what sensory joy and sensory no-thanks look like to us! Autistic people benefit from authentically autistic connection and want others to better understand us, not a one-way street of capacity building!

Then there’s every other disability impacting on relationships, sex and sensuality in myriad other ways. For me, it’s EDS too, because it isn’t just a musculoskeletal problem: It affects ALL my collagen, including my digestive system and its function, the integrity of my reproductive and genitourinary organs and the ligaments holding them in place, and all the other parts of my body I could use for alternative approaches to intimacy. The escalating impacts of EDS over time have also interacted with autism to create new disability support needs for equal participation and enjoyment of this fundamental part of human existence, and whether married for almost a decade, as I am, or exploring sexuality as a young disabled adult, or of legal age in any other consensual scenario over a disabled lifespan, disability- terated sex and intimacy supports and capacity building fall squarely under the NDIS umbrella.

It is completely inappropriate to refer the above examples to mainstream counselling services for highly specific disability support needs, and failing to provide disability supports to “eliminate discrimination against persons with disabilities in all matters relating to marriage, family, parenthood and relationships” violates Article 23 of the CRPD.

Conclusion

I wish to end my submission the same way I ended the Participant Statement of Goals and Aspirations I’ve waited 135 days and counting to share with the agency, but this time,

Speaking directly to the Committee, the NDIS Minister, the CEO, the Board, and every single NDIA employee:

    I am writing myself a new story, in which delayed diagnosis of dual disabilities is only

the prologue. And so, I ask you all: Who do you want to be in my story?

  The villain? The next series of barriers to overcome? Or the cheerleader? The one

with empty promises and platitudes, or the one who is actually in my corner and takes the time to understand the way I experience the world and the kind of help I need to contribute the way I desire?

Because the issues I have raised are basic justice issues. I’m asking you all to take a stand for justice.

Appendix 1: On communication accommodations and streaming

I am including some notes on communication from my participant statement, as I realise these struggles can never be appreciated from a scripted and rehearsed presentation. This is a window into my reality and the justifications for Recommendation 4, as there is nowhere to request this accessibility and support next to the interpreter box on the access request form. It is invisible from current streaming processes, despite primary mental health impairments being a streaming factor. Disabilities like autism need a streaming factor relating to communication and time accommodations, because the existing factors this fits into are not being applied.

The second thing you should know, is that the level of communication you are reading is very different to my ability to communicate in verbal settings where I am under pressure to respond in a timely manner with all the information the person requires to understand my needs.

This has been one of the most debilitating features of autism in my life, with very real negative impacts on my health and well-being. It is and will remain as relevant to my interaction with the NDIS system as it has been in the medical situations which delayed diagnosis of both autism and EDS for decades and finally drove me here.

I can and do speak, but verbal conversation is hard work and severely disadvantages me in settings outside family and friends, and this is rarely acknowledged or accommodated. I need WAY more time than people assume for processing information. I am more comfortable communicating in writing because it gives me a chance to express myself on more equal footing, despite the labour involved. However, nothing I have submitted came easily, even if my words read that way. [13 Oct: And as it turns out, my words were still misunderstood and taken out of context at access, leading to the three-months-and-counting delay in planning. Communication is ALWAYS hard for me, regardless of how it appears to others.]

Arriving at this point is the product of over six months [now ten eleven months] solely focused on getting recognition of my disabilities and other health concerns, after a decade in the dark as my capacity rapidly deteriorated and advocacy efforts failed. This has consumed virtually all of my limited capacity. As my husband said when I proofread this to him, it’s all I’ve done this year. The catalyst was discrimination in a medical setting. Again. These words do not demonstrate my capacity for self-advocacy so much as my research background and the sheer terror of knowing how likely it is I will choke on my words when advocacy matters [or that they’ll be misunderstood anyway!].

My mind goes blank. My social scripts evaporate. I can’t keep track of prepared notes AND follow the conversation.

On the surface, this looks like social anxiety, but it isn’t. It is an autistic reaction to systemic

ableism, reinforced by the trauma of how verbal advocacy has worked out for me historically and in the recent past.

It isn’t about my capacity to understand, but how my brain is wired for handling information. This is a major accessibility problem for me, and everyone wired like me. THAT is why I have gone to so much effort when the cost is incredibly high. That is why I insist my statement of goals and aspirations is included in my plan without alteration or abridgment. It’s because being understood matters, and I need all of you to understand me in a way your existing tools will not capture, or worse, will misjudge.

That is an autism need, but it is dramatically compounded by the fact that, as a recent consensus statement found, the full impact and nuanced picture of the other major contributor to my overall disability—a congenital connective tissue disorder with no lasting treatment and cumulative, widespread impacts on function, which requires a high capacity for self-care, facilitated by an equally high capacity for self-management, when mine is extremely compromised—is also notoriously difficult to capture: Even by experts, even when uncomplicated by the individual’s ability to self-report the way it manifests for them.

That’s before factoring in the evidence that neurodivergence is directly linked to the functional impact of EDS, which is in fact more severe in neurodivergent individuals.

Which means that after all this effort, I’m STILL stressing that my supports won’t reflect my needs, because the reality of my disabilities doesn’t fit neatly into your parameters, and neither do I.