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Eleven Compressed Blood Vessels and the NDIA Still Not Convinced.
Days Waiting: 239
Applications: 1
Reviews: 1
Appeals: 1
Case conferences: 2
Decision: Pending - Preparing For Hearing
How Disabled Is Disabled Enough?
After repeated encouragement from my healthcare team, I applied for NDIS support. Seven months later, after an application, an internal review, and now an ART appeal, the NDIA is still contesting my access.
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The reality is that turning my head can partially dislocate my neck, putting away a coffee mug can cut off blood flow to my arms, and multiple organs are prolapsing. At 33, not being able to work, drive or do every day tasks you used to, really does suck.
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Yet somehow, the biggest challenge isn't living with disability.
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It's proving that it exists.
The Path to Support​
27 November 2025
January 2026
March 16 2026
April 2026
May 19 2026
May - June 2026
May 27 2026
June 8 2026
June 26 2026
June 29 2026
July 03 2026
July 23 2026
I applied with:
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GP report outlining my diagnosed Connective Tissue Disorder, including multiple vascular compressions, cervical instability, associated comorbidities, extensive treatment history, and the resulting functional impact on daily living.
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Psychologist report detailing the impact of my conditions on mental health, coping capacity, and day-to-day functioning.
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Primary treating physiotherapist Functional Capacity Assessment, completed in the NDIA-preferred format (WHODAS 2.0), demonstrating severe functional impairment across 5 of 6 domains.
Application rejected.
GP report was not included in the evidence assessed.
Spent over an hour on the phone challenging advice that GP reports could not be used as evidence. They used my one, and only review on their mistake.
Internal Review Rejected
NDIA accepted I have hEDS but found my impairments were not yet "permanent" because further treatment options remained (physio). NDIA stated future applications would benefit from a Functional Capacity Assessment, despite one already being submitted with my application.
ART Case Conference Date Set
Submitted further evidence directly addressing the reasons for rejection:
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Another GP report.
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Osteopath report confirming permanent neck instability.
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Physiotherapist report confirming permanency and that physiotherapy is maintenance support, not treatment.
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Personal Impact Statement.
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Partner Impact Statement.
ART Case Conference Held
After an hour of discussion, no one could identify any specific gap in my evidence.
Sent a follow-up email requesting clarification (see here).
Ongoing Discussions with NDIA Lawyer
​Despite agreement that my Connective Tissue Disorder was permanent, questions continued regarding the permanence of the resulting impairments. See my last email sent, rebutting all NDIA's points and clearly demonstrating their lack of understanding of CTD's and consistent errors and misinterpretation of evidence.
Freedom of Information Request Lodged
Requested access to internal records and decision-making material after repeated concerns that the nature of my condition and impairments were not being accurately understood.
Complaint Lodged with ART
Raised concerns regarding procedural fairness during the case conference. See complaint here.
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Follow Up Email Sent
ART has not responded in 3 weeks. See email here.​​
Call with local MP representative
Spoke with a representative from my local MP’s office regarding my NDIS matter.
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Key takeaway: despite serious concerns around NDIA delays, procedural fairness, and repeated misunderstandings of medical evidence, there appears to be very little practical accountability for either the NDIA or ART.
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I was advised they cannot intervene in ART matters.
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I questioned who is holding these systems accountable when cases can drag on for months or years, emails take weeks for responses, and many NDIS decisions are later overturned on review or appeal. These delays are not harmless administrative delays. They directly impact vulnerable people’s health, safety, access to care, and quality of life.
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The representative showed empathy, but there was limited visibility into the scale of the issue and no clear pathway for intervention.
ART sent email setting next Case Conference
on the 23rd of July. My complaint to ART remains unresolved.
I have contacted ART and requested that my complaint be escalated, including that the facilitator from the previous conference not be assigned to the upcoming call.
Second Case Conference
Today's ART case conference was deeply disappointing. While I sincerely thank the ART Facilitator and the NDIA's external legal representative for their professionalism and compassion, I have formally asked the Tribunal to place my concerns regarding the conduct of the NDIA Agency Representative on the record. My concerns include the dismissal of my treating physiotherapist's Functional Capacity Assessment despite no legislative basis being identified for requiring an Occupational Therapist, the rejection of the NDIA's own preferred WHODAS 2.0 assessment tool, factual misunderstandings of my medical evidence, and statements suggesting a predetermined view of what evidence would be accepted. A redacted copy of my correspondence to the Tribunal is attached for transparency.
What Waiting Looks Like
I have decided to post daily (or as much as I can) until NDIA provide me access.
Began June 2026.​
Day 1
My sister drove from an hour away to pick me up. I slept over. She took me to my 30 minute appointment. My partner drove in peak hour (1.5 hours), to come get me after work.
All for one 30 minute appointment.
Day 2
My partner had to carry me out of a restaurant. My legs started not working (usual paralysis episode).
Day 3
I drank questionable milk, because I can't drive to pick up some milk.