Number of participants with Postural Orthostatic Tachycardia Syndrome (POTS)
Dear National Disability Insurance Agency,
I am requesting access under the Freedom of Information Act 1982 (FOI Act), to the following documents:
[ START SCOPE OF REQUEST ]
1. The number of current participants with "Postural Orthostatic Tachycardia Syndrome (POTS)" recorded as their Primary Disability/Impairment.
2. The number of current participants with "Postural Orthostatic Tachycardia Syndrome (POTS)" recorded as a Secondary Disability/Impairment.
3. 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
[ END SCOPE OF REQUEST ]
I look forward to your response.
Kind regards,
Emily Lacey
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(NDIA) Freedom of Information (FOI) team.
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Kind regards
Freedom of Information Team
Complaints Management & FOI Branch
General Counsel Division
National Disability Insurance Agency
E [11][NDIA request email]
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References
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Dear Emily Lacey,
Freedom of Information Request: Acknowledgement & Extension of Time
Request
Thank you for your request of 8 May 2025, made under the Freedom of
Information Act 1982 (FOI Act), for copies of documents held by the
National Disability Insurance Agency (NDIA).
Scope of your Request
You have requested access to:
"...1. The number of current participants with "Postural Orthostatic
Tachycardia Syndrome (POTS)" recorded as their Primary
Disability/Impairment.
2. The number of current participants with "Postural Orthostatic
Tachycardia Syndrome (POTS)" recorded as a Secondary
Disability/Impairment.
3. 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..."
Processing Timeframes
In accordance with section 15(5)(b) of the FOI Act, a 30-day statutory
period for processing your request commenced from 9 May 2025. This 30-day
period expires on 7 June 2025.
The 30-day period can be extended in a number of ways, including with your
agreement.
Extension of Time Request:
Unfortunately, it is currently taking us a little longer than 30 days to
process FOI requests due to a very high volume of incoming matters. I am
therefore seeking your agreement to a 30-day extension of time under
section 15AA of the FOI Act. If you agree to this extension, the new due
date for us to decide on your request will be 7 July 2025.
Please let us know if you agree by Friday 23 May 2025.
Explanation of Extension of Time Request:
The reason I am seeking an extension of time is to ensure I preserve your
review rights under the FOI Act.
FOI applicants are normally entitled to exercise a right of internal
review if they are unsatisfied with the outcome of an FOI decision.
However, this right of review lapses if a FOI decision is not made within
the statutory timeframe. This is because if an agency doesn’t issue their
decision within the statutory timeframe, they are deemed to have refused
the request for documents. If this situation happens, it will limit your
options for formal review to only contacting the OAIC.
You are not obligated to agree to this request, you would still retain
your review rights with our regulatory body OAIC (Office of the Australian
Information Commission).
Irrelevant Information
Section 22 of the FOI Act allows an Agency to redact information from
documents if that information would reasonably be regarded as irrelevant
to a request for access.
Given the nature of your request, it does not seem that NDIA staff
members’ surnames and contact details would be relevant to you. Can you
please send me a reply email confirming that such details are irrelevant
to your request for access?
Action Required
Can I please request a response regarding our request for a 30-day
extension of time, by Friday 23 May 2025.
Next steps
I have completed some preliminary work on your request; however, your
matter will be allocated to an authorised FOI decision-maker for any
further action. The decision-maker may need to contact you to discuss a
range of matters, including refining the scope of your request.
We will contact you using the email address you have provided. Please
advise if you would prefer us to use an alternative means of contact.
In the meantime, if you have any questions or need help, please contact us
at [1][NDIA request email].
Kind regards,
Mackenzie
Triage Officer – Triage and Early Resolution
Information Release, Privacy and Legal Operations Branch
Reviews and Information Release Division
National Disability Insurance Agency
[2][NDIA request email]
[3]NDIA logo
[4]LGBTIQA+ rainbow graphic
The NDIA acknowledges the Traditional Custodians of Country throughout
Australia and their continuing connection to land, sea and community. We
pay our respects to them and their cultures and to Elders past, present
and emerging.
Dear Emily Lacey
I apologise for the delay in providing you with a decision on this
request.
In reviewing the scope of your application, I believe it is publicly
available and published regularly by our Data Team here under Participants
by diagnosis [1]Participant datasets | NDIS. I have attached the
spreadsheet you can download from our website which lists:
o Report date
o State (including national under All)
o NDIS Disability Group Name
o ICD Disability Name
o Primary and Reported
A search of this spreadsheet shows 39 participants with POTS listed as a
primary disability and 157 reported as of 31 March 2025 under All. This
spreadsheet also goes back to 2020/2021 by quarter.
While I have not confirmed with the business area, this report appears to
be updated quarterly. Our areas are currently working on reporting for the
NDIA’s Annual and Quarterly reports, therefore I expect this data to be
updated shortly after those have been finalised and published.
As such, I believe this document satisfies your request, noting that POTS
is listed under ‘Other’ in NDIS Disability Group Name and not ‘Other
Neurological’ or ‘Other Physical’.
Could you please advise if you are happy to withdraw your request, or you
still wish for us to continue processing.
Kind regards
Patrick (PHO293)
Senior Freedom of Information Officer
Information Release, Privacy and Legal Operations Branch
Reviews and Information Release Division
National Disability Insurance Agency
E [2][NDIA request email]
[3]NDIA logo
[4]LGBTIQA+ rainbow graphic
The NDIA acknowledges the Traditional Custodians of Country throughout
Australia and their continuing connection to land, sea and community. We
pay our respects to them and their cultures and to Elders past, present
and emerging.
[5]Aboriginal and Torres Strait Islander flags graphic
Dear Patrick,
Sorry I haven’t gotten back to you sooner, my real life has been a bit hectic lately but hopefully getting back on track now.
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).
I wrote this request relying on the following relevant documents:
- FOI 24/25-0754 DOCUMENT 14: Applicant - record disability conditions and impairments (Exported on 2025-01-20)
- FOI 24/25-0754 DOCUMENT 3: Request a participant disability change (Exported on 2025-01-19)
- FOI 24/25-0754 DOCUMENT 1: Add a new primary disability (Exported on 2025-01-19)
- FOI 22/23-1219 DOCUMENT 1: Add or Change Disability (V6.0 2021-07-07)
- FOI 24/25-0883 DOCUMENT 15: Impairment categories guide (V1.0 2024-10-10)
- FOI 24/25-0883 DOCUMENT 1: Make an access decision - Post legislation changes (V9.0 2024-11-20)
So far as I can tell from reading these documents, a participants file includes the following as part of recording each “disability” (there can be more than one):
“The Disabilities tab must include all impairments that meet the requirements for disability,
early intervention or both as this affects planning.”
- “Reported condition”, ie. as it was written by the participant or the participants doctor in the access request/supporting evidence (“When a person with a disability applies to the NDIS, they will provide their impairment evidence. This is a reported condition. The person may have more than one impairment when they apply”).
- “Assessed Impairment”, ie. the agency's standardised name for whatever the reported condition is. This uses the NDIA’s internal impairments list to record the correct ICD code and name for the condition/impairment.
- A checkbox to select whether or not the disability is a “Primary Disability”. If this box isn’t checked, it is considered a “Secondary Disability” automatically.
- A checkbox to select “Is Verified”, meaning the condition/impairment has been accepted as meeting the NDIS eligibility criteria by “authorised delegates with relevant permissions” to do so.
- “Start Date”, should be recorded as “today’s date” (previously known as the “Effective Start Date”).
- “Onset Date”, ie. the onset date of the condition, included only “if known”.
- “End Date”, adding an end date changes the “Active Status” of the condition/impairment and removes it from a participants current NDIS eligible impairments (previously known as the “Effective End Date”).
In addition to that, each “Assessed Impairment” is now associated with/assigned a “Required impairment category” and “Optional impairment categories”, which I would assume are also recorded in the participants file somewhere.
The “Impairment Categories Guide” document (FOI 24/25-0883) states:
“This article provides guidance for an access delegate to:
• understand what impairment categories to select for a person that meets the eligibility
requirements.
[…]
Impairments categories guide
[…]
The following list provides you with information on:
• the condition
• the ICD 10 Code
• the required impairment category for access assessors to select
• optional impairment categories to select as relevant, based on evidence provided with
access request.
Conditions
[…]
Other
[…]
18. Postural Orthostatic Tachycardia Syndrome (POTS) – mandatory TAPIB
ICD 10 Codes: I49.8
Required impairment category: Neurological
Optional impairment categories: Physical”
I believe you misunderstood what I was referring to with point 3 of my request, as you said "noting that POTS is listed under ‘Other’ in NDIS Disability Group Name and not ‘Other Neurological’ or ‘Other Physical’." You're correct that an "Assessed Impairment" of "Postural Orthostatic Tachycardia Syndrome (POTS)" does fall under the "Other" disability group, but I was referring to the "Impairment Categories" as listed under each specific condition in the "Impairment Categories Guide" (as seen above).
For those reasons, I request that you please continue with processing my request using the original scope.
Kind regards,
Emily Lacey
Dear Emily,
Thank you for getting back to us and providing the additional information
in your below email.
We are making further enquiries with staff in our Data and Analytics
Branch in the hope of being able to answer your request.
If you have any questions in the meantime, please contact us at
[1][NDIA request email].
Kind Regards
Liz
Senior Freedom of Information Officer
Information Release, Privacy and Legal Operations Branch
Reviews and Information Release Division
National Disability Insurance Agency
E: [2][NDIA request email]
[3]NDIA logo
[4]LGBTIQA+ rainbow graphic
The NDIA acknowledges the Traditional Custodians of Country throughout
Australia and their continuing connection to land, sea and community. We
pay our respects to them and their cultures and to Elders past, present
and emerging.
[5]Aboriginal and Torres Strait Islander flags graphic
------------------------------------------------------------------------
From: Emily Lacey <[FOI #13130 email]>
Sent: Sunday, 10 August 2025 6:32 PM
To: foi <[NDIA request email]>
Subject: RE: FOI 24/25-1950 – Your Request for Information – Publicly
available information [SEC=OFFICIAL]
Dear Patrick,
Sorry I haven’t gotten back to you sooner, my real life has been a bit
hectic lately but hopefully getting back on track now.
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).
I wrote this request relying on the following relevant documents:
- FOI 24/25-0754 DOCUMENT 14: Applicant - record disability conditions and
impairments (Exported on 2025-01-20)
- FOI 24/25-0754 DOCUMENT 3: Request a participant disability change
(Exported on 2025-01-19)
- FOI 24/25-0754 DOCUMENT 1: Add a new primary disability (Exported on
2025-01-19)
- FOI 22/23-1219 DOCUMENT 1: Add or Change Disability (V6.0 2021-07-07)
- FOI 24/25-0883 DOCUMENT 15: Impairment categories guide (V1.0
2024-10-10)
- FOI 24/25-0883 DOCUMENT 1: Make an access decision - Post legislation
changes (V9.0 2024-11-20)
So far as I can tell from reading these documents, a participants file
includes the following as part of recording each “disability” (there can
be more than one):
“The Disabilities tab must include all impairments that meet the
requirements for disability,
early intervention or both as this affects planning.”
- “Reported condition”, ie. as it was written by the participant or the
participants doctor in the access request/supporting evidence (“When a
person with a disability applies to the NDIS, they will provide their
impairment evidence. This is a reported condition. The person may have
more than one impairment when they apply”).
- “Assessed Impairment”, ie. the agency's standardised name for whatever
the reported condition is. This uses the NDIA’s internal impairments list
to record the correct ICD code and name for the condition/impairment.
- A checkbox to select whether or not the disability is a “Primary
Disability”. If this box isn’t checked, it is considered a “Secondary
Disability” automatically.
- A checkbox to select “Is Verified”, meaning the condition/impairment has
been accepted as meeting the NDIS eligibility criteria by “authorised
delegates with relevant permissions” to do so.
- “Start Date”, should be recorded as “today’s date” (previously known as
the “Effective Start Date”).
- “Onset Date”, ie. the onset date of the condition, included only “if
known”.
- “End Date”, adding an end date changes the “Active Status” of the
condition/impairment and removes it from a participants current NDIS
eligible impairments (previously known as the “Effective End Date”).
In addition to that, each “Assessed Impairment” is now associated
with/assigned a “Required impairment category” and “Optional impairment
categories”, which I would assume are also recorded in the participants
file somewhere.
The “Impairment Categories Guide” document (FOI 24/25-0883) states:
“This article provides guidance for an access delegate to:
• understand what impairment categories to select for a person that meets
the eligibility
requirements.
[…]
Impairments categories guide
[…]
The following list provides you with information on:
• the condition
• the ICD 10 Code
• the required impairment category for access assessors to select
• optional impairment categories to select as relevant, based on evidence
provided with
access request.
Conditions
[…]
Other
[…]
18. Postural Orthostatic Tachycardia Syndrome (POTS) – mandatory TAPIB
ICD 10 Codes: I49.8
Required impairment category: Neurological
Optional impairment categories: Physical”
I believe you misunderstood what I was referring to with point 3 of my
request, as you said "noting that POTS is listed under ‘Other’ in NDIS
Disability Group Name and not ‘Other Neurological’ or ‘Other Physical’."
You're correct that an "Assessed Impairment" of "Postural Orthostatic
Tachycardia Syndrome (POTS)" does fall under the "Other" disability group,
but I was referring to the "Impairment Categories" as listed under each
specific condition in the "Impairment Categories Guide" (as seen above).
For those reasons, I request that you please continue with processing my
request using the original scope.
Kind regards,
Emily Lacey