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Eleven Compressed Blood Vessels and the NDIA Still Not Convinced.

Days Waiting: 196 

Applications: 1

Reviews: 1

Appeals: 1

Decision: Pending - ART stage

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

I applied with:

  • 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.

  • Psychologist report detailing the impact of my conditions on mental health, coping capacity, and day-to-day functioning.

  • 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:

  • Another GP report.

  • Osteopath report confirming permanent neck instability.

  • Physiotherapist report confirming permanency and that physiotherapy is maintenance support, not treatment.

  • Personal Impact Statement.

  • 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. 

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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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.

Day 4

My husband had to leave work early to take me to an apppointment.

Day 7

Colorectal surgeon says to continue pelvic floor physio, as surgery isn't a good option for CTD (likely to fail or relapse). But I can't, as those sessions are $150 and I have used my chronic care plan up.

Day 10

There has been a medical emergency in my family and I am unable to support or offer any help (as I can't drive).

Day 5

My husband told me he has no sick leave left. 

Day 8

I tried to spray the garden (crazy caterpillar infestation), but my right hand blew up (aggravated my vein compressions). 

Day 11

My older sister took me to Osteo and my younger sister picked me up.

Day 6

My sister visited for an hour, as she knows I get lonely being isolated at home.

Day 9

Thoracic Outlet specialist says to go back to physio. We are doing an MRA to check there are no clots or issues (as my subclavian arteries both occlude when I raise my arms). But I can't afford my TOS physio at this time (I have 4 different specialist physios).

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Disclaimer: I'm not a doctor — just a chronically ill woman navigating the medical maze with a healthy dose of sarcasm and lived experience. The content on this blog is for informational and educational purposes only and is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

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