NDIA Accountability Project

Impact of rare blood disorder diagnosis on NDIS access

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submission 2154

Dear Senators,

My name is Elyssa White, and I am writing to share my experience in the hope of improving the NDIS system for all disabled Austrnlians, and me.

I was born in Sydney on 25 November 1970 and, in 2011, I contrncted a rare and incurable blood disorder called Rickettsia Orientia, in Sydney.

Although we tried our best, while was bedridden for nearly 4 years, I was not co1Tectly diagnosed until 2018, by specialist haematologist Dr. Jane Freeman of the Sydney Adventist Hospital Cancer Clinic. I have been left with significant, pennanent physical and cognitive disabilities.

Despite my condition, my 2024 application for the NDISa€“suppo1ied by my specialists and GPa€“was rejected.

Since then, I have been passed between various ‘COS co-ordinators’ and “expe1is” without progress. I am cmTently working with Adrian Oa€™Malley at Disability Advocacy Services while awaiting a review.

I would like to pose the following questions regarding the cmTent system:

  • What are the medical qualifications of the individuals responsible for assessing applicants?
  • Is there a central database for applicants to ensure continuity of care?
  • How do outsourced agencies communicate with one another? I am concerned about how my data is shared, given the apparent lack of coordination and progress repo1iing between these entities.
  • Why have these essential tasks been outsourced, and what oversight exists for these private agencies?
  • What specific skills and qualifications do NDIA staff, such as Joyce Collins, possess to accurately assess complex cases like mine?

It appears that the involvement of too many disjointed agencies is detrimental to those the system is meant to serve. I strongly suggest a thorough review of the outsourced organisations managing these processes to ensure they are qualified and accountable, without comprising those in need.

I look fo1ward to your response regarding these concerns, and I consent to my infonnation being publicly available.

Sincerely,