Our reference: FOI 24/25-1950 (LEX ID 478)
29 August 2025
GPO Box 700 Canberra ACT 2601 1800 800 110
ndis.gov.au
Emily Lacey
By email: foi+request-13130-3423b4db@righttoknow.org.au
Dear Emily Lacey,
Your Freedom of Information request — Notification of Decision
Thank you for your correspondence of 8 May 2025, in which you requested access under the Freedom of Information Act 1982 (FOI Act) to documents held by the National Disability Insurance Agency (NDIA).
The purpose of this letter is to provide you with a decision on your request.
Scope of your request
You have requested access to documents about the National Disability Insurance Scheme (NDIS). Specifically, you requested access to:
“1. The number of current participants with “Postural Orthostatic Tachycardia Syndrome (POTS)” recorded as their Primary Disability/Impairment.
The number of current participants with “Postural Orthostatic Tachycardia Syndrome (POTS)” recorded as a Secondary Disability/Impairment.
The number of participants who have “Postural Orthostatic Tachycardia Syndrome (POTS)” recorded as their disability, with the “impairment category” recorded as:
a. Neurological
b. Physical”
Correspondence and additional information
On 29 July 2025 we emailed you advising that the relevant information could be located in the publicly available dataset “Participants count by diagnosis data” published on the NDIS website at the following link:
Participant datasets | NDIS.
As such, we sought your agreement to withdraw your request.
On 10 August 2025 you advised that the publicly available material did not satisfy the full scope of your request. Specifically, you stated:
“The data you’ve provided unfortunately doesn’t address my request in full. I think the “primary disability” number would likely be in alignment with my request (point 1), but its not totally clear whether the “reported disability” number would be the same as the “secondary disability” number (point 2).
Additionally, the data doesn’t include any information about the “Impairment Category” (point 3), which is assigned to each of a participant’s recorded disabilities (based on the “Reported Condition” and “Assessed Impairment” fields found in the “Disabilities tab” of a participant’s file).”
In light of your response, I conducted further consults with staff in our Analytics, Data and Actuarial Branch (ADA). ADA have since advised the following:
If the “reported disability” number is the same as the “secondary disability” number:
Please refer to the Participants count by diagnosis data rules (DOCX 93KB) for the definition of each column in the data cube. Specifically, ‘Reported’ numbers refer to primary + non-primary figures. Therefore, the secondary count can be calculated by subtracting the ‘Primary’ field from the ‘Reported’ field.
Information/data relating to the “Impairment Category” – which is assigned to each of a participant’s recorded disabilities:
‘Impairment Category’ is not an official and standard terms used across the Agency and the public reports. We recommend the applicant to refer to the 15 disability groups and ICD disability codes reported in the public data cube Participants count by diagnosis data (CSV 1.4MB) on the Participant datasets page on NDIS website for participants’ diagnosis data. Other than disability groups and ICD disability codes, ADA does not hold additional structured data on participants’ recorded disabilities.
Decision on access to documents
I am authorised to make decisions under section 23(1) of the FOI Act. My decision on your request and the reasons for my decision are set out below.
I have identified 2 documents relevant to the scope of your request. The 2 documents are publicly available via the above links to the NDIS website.
In reaching my decision, I took the following into account:
- your correspondence outing the particulars of your request;
- the FOI Act;
- the FOI Guidelines published under section 93A of the FOI Act;
- consultation with relevant officers of the NDIA.
Rights of review
Your rights to seek a review of my decision, or lodge a complaint, are set out at Attachment A.
Please contact us at foi@ndis.gov.au if you have any questions or require help.
Yours sincerely
Elizabeth (EFH599) Senior Freedom of Information Officer Information Release, Privacy and Legal Operations Branch Reviews and Information Release Division