Our reference: FOI 24/25-1220
GPO Box 700
Canberra ACT 2601
1800 800 110
27 March 2025
ndis.gov.au
Gemma Jones
By email: xxxxxxxxxxxxxxxxxxxxxxxxxx@xxxxxxxxxxx.xxx.xx
Dear Gemma Jones
Freedom of Information request — Notice of Decision
Thank you for your correspondence of 3 February 2025
(your correspondence), seeking
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 the following documents:
“I am requesting access under the Freedom of Information Act 1982 (FOI Act) to the
following documents and data regarding Rubinstein-Taybi Syndrome (RTS) and the
NDIS:
1. Any internal guidelines, policies, or decision-making frameworks currently in use
that outline support provision for participants with Rubinstein-Taybi Syndrome (RTS),
particularly in relation to its degenerative nature.
2. Documents that define or provide guidance on the assessment criteria and key
indicators used to determine funding levels and support needs for participants with
RTS.
3. The number of NDIS participants with a primary or secondary diagnosis of
Rubinstein-Taybi Syndrome.
4. Data on the average level of funding allocated to NDIS participants with RTS,
broken down by support categories (e.g., Core Supports, Capacity Building, and
Capital Supports)."
Expiration of time
The FOI Act provides 30 calendar days for the processing of an FOI request after it is
received. As your valid FOI request was received on 3 February 2025, the original due date
for your request was 5 March 2025.
On 17 February and 26 February 2025, we emailed you seeking your agreement to a 30-day
extension of time pursuant to 15AA of the FOI Act; to date we have not received a response
to these requests.
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On 3 March 2025, we submitted a request to the Office of the Australian Information
Commissioner (OAIC) for an extension of time pursuant to 15AB of the FOI Act. On 5 March
2025, we received a decision from the OAIC to decline our extension request.
Therefore, the due date to provide you with a decision on your request remains 5 March
2025, and as we were not able to complete your application by this legislated due date, your
application is regarded as a deemed refusal under section 15AC of the FOI Act.
Despite this, I have continued to process your application. I apologise for the delay and
confirm that you retain your right to seek external review of this decision. Details are set out
in
Attachment B to this letter.
Searches conducted
Searches were conducted by the following business areas for documents relevant to the
scope of your request:
• Analytics, Data and Actuarial (ADA); and
• Service Design; and
• Technical Advice and Practice Improvement Branch (TAPIB)
Decision
I am the authorised officer pursuant to section 23(1) of the FOI Act to make a decision on
this FOI request.
After reviewing all advice and information provided, I have determined that documents
relevant to the scope of your request cannot be located or do not exist. As such, I have
decided to refuse access to information relevant to the scope of your request pursuant to
24A of the FOI Act, details of why are set out in my statement of reasons at
Attachment A. Rights of review
Your rights to seek a review of my decision, or lodge a complaint, are set out at
Attachment B.
Should you have any enquiries concerning this matter, please do not hesitate to contact me
by email at xxx@xxxx.xxx.xx.
Yours sincerely
Patrick (PHO293) Senior Freedom of Information Officer
Information Release, Privacy and Legal Operations Branch
Reviews and Information Release Division
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Attachment A
Statement of Reasons
FOI 24/25-1220
_________________________________________________________________________
REFUSAL UNDER 24A
I have refused access to the information you requested under section 24A of the FOI Act on
the basis that documents are unlocatable or do not exist.
Relevant Law
Under the FOI Act, a person has a right to be given access to documents of an agency.
However, the right of access is subject to limitations, including grounds for refusal of access.
Section 24A of the FOI Act states that an agency may refuse a request for access to a
document if all reasonable steps have been taken to find the document and the agency is
satisfied that the document cannot be found or does not exist.
Searches for Documents
I engaged in consultations with the following business areas to obtain documents within their
possession which may fall within the scope of your FOI request:
• Analytics, Data and Actuarial (ADA); and
• Service
Design
As a result of these searches 25 documents were located, these searches were conducted
between 17 February and 20 February 2025 and were overseen by senior staff.
On 18 February 2025, we were advised that the following business area may also have
documents in their possession which may fall within the scope of your request, and a
subsequent search consultation was sent to:
• Technical Advice and Practice Improvement Branch (TAPIB)
As a result of this search, no documents were located, this search was conducted between
18 February and 26 February 2025 and was overseen by senior staff.
In total 25 documents were located by the above business areas. After reviewing these
documents, I have determined that they do not fall within the scope of your request.
Review of Documents and Advice by Business Areas
ADA
The search results from our consultation with ADA resulted in one document being provided
which is also available on the NDIS Data website here under
Participant diagnosis, goals
and plan management – Participant by diagnosis.
ADA advised that the ICD-10 code for Rubinstein-Taybi Syndrome (RTS) is
Q87.2 and that
when a search was performed using this code on the publicly available document, no results
were returned. I have also confirmed that no results were returned when I ran the search
myself.
Given that the searches using the ICD-10 code returned no results, I consider this document
not to be within scope of your request and I am satisfied that documents relevant to points 3
and 4 of your request do not exist and cannot be created given no participants on the NDIS
are currently listed as having RTS as a primary or secondary diagnosis.
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Service Design
Advice was provided by Service Design that they do not hold any documents specific to RTS
and instead hold documents relevant to priority access and planning pathways for
participants who have degenerative conditions, this being 24 documents they provided.
I have interpreted points 1 and 2 of your request as being for documents specific to RTS.
After reviewing the documents, I agree with the assessment that they are priority access and
planning pathway documents for participants who have degenerative conditions and make
no mention of RTS. Therefore, I am satisfied that these 24 documents do not fall within the
scope of your request.
17 of the documents provided were different versions of the Reasonable and necessary
supports | NDIS and Applying to the NDIS | NDIS Guidelines that are publicly available. The
remaining documents were around the topics of Life-Limiting Conditions, Terminal Illness
and Degenerative Conditions.
TAPIB
The search result from our consultation with TAPIB resulted in no documents being located.
This is consistent with the information provided by ADA that no participants on the NDIS are
currently listed as having RTS as a primary or secondary diagnosis.
Supports for Participants
It is noted that your request is for support provision, funding levels and support needs for
participants with RTS. NDIA delegates make assessments
Decision
In reaching my decision, I took the following into account:
• Your correspondence of 3 February 2025 outlining the scope of your request
• The provisions of the FOI Act including ss 15 and 24A
• The FOI Guidelines published under section 93A of the FOI Act, particularly parts
3.89 to 3.94 regarding sufficiency of search
• Consultation with relevant officers and business areas of the NDIA
Based on the search results from the relevant business areas and consultation with subject
matter experts, I am satisfied sufficient searches were performed by the relevant business
areas, and that documents relevant to the scope of your request cannot be found or do not
exist.
I therefore refuse access to the information under section 24A of the FOI Act on the basis
that the information cannot be found or does not exist.
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ATTACHMENT B
Your review rights
As this matter was a deemed refusal, internal review of this decision is not an option.
However, if you have concern with any aspect of this decision, please contact the NDIA FOI
team by email xxx@xxxx.xxx.xx or by post:
Freedom of Information Section
Complaints Management & FOI Branch
General Counsel Division
National Disability Insurance Agency
GPO Box 700
CANBERRA ACT 2601
Review by the Office of the Australian Information Commissioner
The FOI Act gives you the right to apply to the Office of the Australian Information
Commissioner (OAIC) to seek a review of this decision.
If you wish to have the decision reviewed by the OAIC, you may apply for the review, in
writing, or by using the online merits review form available on the OAIC’s website at
www.oaic.gov.au, within 60 days of receipt of this letter.
Applications for review can be lodged with the OAIC in the following ways:
Online: www.oaic.gov.au
Post: GPO Box 5218, Sydney NSW 2001
Email: xxxxxxxxx@xxxx.xxx.xx
Phone: 1300 363 992 (local call charge)
Complaints to the Office of the Australian Information Commissioner or the
Commonwealth Ombudsman
You may complain to either the Commonwealth Ombudsman or the OAIC about actions
taken by the NDIA in relation to your request. The Ombudsman will consult with the OAIC
before investigating a complaint about the handling of an FOI request.
Your complaint to the OAIC can be directed to the contact details identified above. Your
complaint to the Ombudsman can be directed to:
Phone: 1300 362 072 (local call charge)
Email: xxxxxxxxx@xxxxxxxxx.xxx.xx
Your complaint should be in writing and should set out the grounds on which it is considered
that the actions taken in relation to the request should be investigated.
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