ME/CFS - Treatments (second request)
Dear National Disability Insurance Agency,
For the second time I request a copy of all documents held or used by the NDIA to determine whether or not a person with the neurological condition Myalgic Encephalomyelitis (ME) is permanently disabled.
The information requested includes but not be limited to: the drugs, treatments, management regimes that the persons medical professional is expected to provide before making the determination that the condition is permanent.
Yours faithfully,
Julie Keys
Thank you for your email to the National Disability Insurance Agency
(NDIA) Freedom of Information (FOI) team.
Please note: due to a high volume of requests, our ability to respond to
you in a timely manner may be affected. We will action your request as
soon as possible and will endeavour to process your matter within the
legislative deadlines. We may need to seek your agreement to an extension
of time. We appreciate your understanding if this is required.
Participant Information
Did you know the NDIA has other ways to access the documents and
information that we hold?
Participants, Guardians and Nominees can obtain copies of some participant
information through our National Contact Centre (NCC). For more
information about what’s available through the NCC, please contact 1800
800 110.
Please visit our [1]Access to Information webpage to find out more about
accessing information through:
* The [2]Participant Information Access (PIA) scheme
* The [3]Information Publication Scheme (IPS)
* The [4]myplace portal for participants
* The [5]myplace portal for providers
Access to Data
You can also request data and statistics. Please visit our [6]Data and
insights webpage page for further information.
If you are able to obtain your information from a source listed above, you
can withdraw your FOI request by emailing [7][NDIA request email]
Further Information
Information about how to make an FOI request can be found on our website:
[8]Freedom of Information
Should you have a query unrelated to FOI, please contact the Agency by
email at [9][email address] or via webchat at [10]ndis.gov.au.
Alternatively, you can also contact us by phoning 1800 800 110.
Kind regards
Freedom of Information Team
Complaints Management & FOI Branch
General Counsel Division
National Disability Insurance Agency
E [11][NDIA request email]
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.
References
Visible links
1. https://www.ndis.gov.au/about-us/policie...
https://www.ndis.gov.au/about-us/policie...
2. https://www.ndis.gov.au/about-us/policie...
https://www.ndis.gov.au/about-us/policie...
3. https://www.ndis.gov.au/about-us/policie...
https://www.ndis.gov.au/about-us/policie...
4. https://www.ndis.gov.au/participants/usi...
https://www.ndis.gov.au/participants/usi...
5. https://www.ndis.gov.au/providers/workin...
https://www.ndis.gov.au/providers/workin...
6. https://data.ndis.gov.au/
https://data.ndis.gov.au/
7. mailto:[NDIA request email]
mailto:[NDIA request email]
8. https://www.ndis.gov.au/about-us/policie...
https://www.ndis.gov.au/about-us/policie...
9. mailto:[email address]
mailto:[email address]
10. https://www.ndis.gov.au/
https://www.ndis.gov.au/
11. mailto:[NDIA request email]
Dear National Disability Insurance Agency,
Since making this request I have found the TAB reference document at the following location.
https://www.righttoknow.org.au/request/t...
This TAB reference document includes references to a list of drugs that are NON curative and sometimes made available to people in the UK or the USA . The drugs are NOT generally prescribed in Australia as Australia's medical guidance has NOT kept up with the UK and the USA . I will modify my request.
Yours faithfully,
Julie Keys
Dear Julie Keys
Freedom of Information Request: Acknowledgement
Thank you for your request of 5 September 2024, 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:
“ For the second time I request a copy of all documents held or used by
the NDIA to determine whether or not a person with the neurological
condition Myalgic Encephalomyelitis (ME) is permanently disabled.
The information requested includes but not be limited to: the drugs,
treatments, management regimes that the persons medical professional is
expected to provide before making the determination that the condition is
permanent.”
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?
Processing Timeframes
In accordance with section 15(5)(b) of the FOI Act, a 30-day statutory
period for processing your request commenced from 6 September 2024. This
30-day period expires on 7 October 2024.
The 30-day period can be extended in a number of ways, including with your
agreement.
Unfortunately, it is currently taking us a little longer than 30 days to
process FOI requests. 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 6
November 2024.
If you do not agree and we are unable to process your request within the
30-day period expiring on 7 October 2024 , we will be deemed to have
refused your request and you will not have a right to seek internal review
of that decision. You will, however, retain your right to external review
by the Australian Information Commissioner.
Please let us know if you agree by 1 October 2024.
Disclosure Log
Subject to certain exceptions, documents released under the FOI Act will
be published on the NDIA’s disclosure log located on our website.
If you have any concerns about the publication of the documents you have
requested, please contact me.
Next steps
Your request will be allocated to an authorised FOI decision-maker. 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].
Regards
Mykal
Freedom of Information Officer
Complaints Management & FOI Branch
General Counsel 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
Good afternoon Julie
I am following up with you regarding our request for an extension of time
to manage your matter.
I note I have only recently been allocated carriage of your request and
the original due date for a decision is Monday, 7 October 2024. I advise
that I am working from Queensland, and 7 October 2024 is a public holiday
for the King’s birthday. As such, and in accordance with section 36(2) of
the Acts Interpretation Act 1901, which states:
o if an Act requires a thing to be done by a deadline that falls on a
public holiday or weekend, it can legitimately be done the next
working day.
your application is now due on Tuesday, 8 October 2024.
Extension
As it is unlikely I will be able to complete document searches and a
decision on access by this date, I respectfully request you agree to the
granting of a 21-day extension under section 15AA of the FOI Act, making
the new due date 28 October 2024.
Your agreement to the extension will mean your matter will not become
deemed and as a result your internal review rights will be upheld.
Could you please respond at your earliest convenience, or before 11.59pm
on 8 October 2024 and advise if you are agreeable or not.
I sincerely apologise for the tight timeframe for your response.
Kind regards
Jennifer (JFD472)
Senior Freedom of Information Officer
Government, Risk & Legal – Complaints Management and FOI
General Counsel Division
National Disability Insurance Agency
T: (07) 1800 800 110
E: [1][NDIA request email]
[2]Title: NDIS delivered by the National Disability Insurance Agency
[3]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.
[4]Aboriginal and Torres Strait Islander flags graphic
From: foi <[NDIA request email]>
Sent: Thursday, September 26, 2024 3:38 PM
To: 'Julie Keys' <[FOI #12014 email]>
Cc: foi <[NDIA request email]>
Subject: FOI 24/25-0309 – Your request for information – Acknowledgement &
Extension of Time [SEC=OFFICIAL]
Dear Julie Keys
Freedom of Information Request: Acknowledgement
Thank you for your request of 5 September 2024, 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:
“ For the second time I request a copy of all documents held or used by
the NDIA to determine whether or not a person with the neurological
condition Myalgic Encephalomyelitis (ME) is permanently disabled.
The information requested includes but not be limited to: the drugs,
treatments, management regimes that the persons medical professional is
expected to provide before making the determination that the condition is
permanent.”
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?
Processing Timeframes
In accordance with section 15(5)(b) of the FOI Act, a 30-day statutory
period for processing your request commenced from 6 September 2024. This
30-day period expires on 7 October 2024.
The 30-day period can be extended in a number of ways, including with your
agreement.
Unfortunately, it is currently taking us a little longer than 30 days to
process FOI requests. 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 6
November 2024.
If you do not agree and we are unable to process your request within the
30-day period expiring on 7 October 2024 , we will be deemed to have
refused your request and you will not have a right to seek internal review
of that decision. You will, however, retain your right to external review
by the Australian Information Commissioner.
Please let us know if you agree by 1 October 2024.
Disclosure Log
Subject to certain exceptions, documents released under the FOI Act will
be published on the NDIA’s disclosure log located on our website.
If you have any concerns about the publication of the documents you have
requested, please contact me.
Next steps
Your request will be allocated to an authorised FOI decision-maker. 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 [5][NDIA request email].
Regards
Mykal
Freedom of Information Officer
Complaints Management & FOI Branch
General Counsel Division
National Disability Insurance Agency
E [6][NDIA request email]
[7]NDIA logo
[8]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.
[9]Aboriginal and Torres Strait Islander flags graphic
Dear foi,
I am concerned that your are not able to meet the deadline given that this information should be readily available to NDIA staff who are making access decisions and hence easy to quickly provide under this FOI request.
I agree to a 7 day extension.
Yours sincerely,
Julie Keys
Dear foi,
I am still waiting for a response to this request.
Please advise when you intend to respond.
Yours sincerely,
Julie Keys
Good morning Julie
I confirm as per your email of 6 October 2024, which was in response to my
request to for a 14-day extension of time, that you agreed to a 7-day
extension of time under section 15AA of the FOI Act.
This makes a decision on access on your request due tomorrow – 15 October
2024.
I advise that at this stage, I have only had a response to my internal
document search requests from one department and I am waiting on responses
from another 2. This means I am unlikely to be able to review responses,
assess any documents located and provide you with a decision on access by
COB tomorrow 15 October 2024.
I request you provide me with a further 3-day extension, making the due
date as Friday 18 October 2024.
If you agree to the small extension, your matter will remain in time and
your internal review rights will be upheld. If you disagree, I am required
to continue processing your matter, but you will loose your internal
review rights.
Could I please ask you to respond to above by COB 15 October 2024 and
advise if you agree or disagree to the requested extension.
Kind regards
Jennifer (JFD472)
Senior Freedom of Information Officer
Government, Risk & Legal – Complaints Management and FOI
General Counsel Division
National Disability Insurance Agency
T: (07) 1800 800 110
E: [1][NDIA request email]
[2]Title: NDIS delivered by the National Disability Insurance Agency
[3]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.
[4]Aboriginal and Torres Strait Islander flags graphic
Dear Julie Keys
Thank you for your request for information.
Please find attached correspondence in relation to your request. If you
require this in a different format, please let us know.
Please contact us at [1][NDIA request email] if you have any questions or
require help.
Kind regards
Jennifer (JFD472)
Senior Freedom of Information Officer
Complaints Management & FOI Branch
General Counsel Division
National Disability Insurance Agency
E: [2][NDIA request email]
[3]Title: NDIS delivered by the National Disability Insurance Agency
[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: foi <[NDIA request email]>
Sent: Monday, October 14, 2024 7:53 AM
To: '[FOI #12014 email]'
<[FOI #12014 email]>
Cc: foi <[NDIA request email]>
Subject: FOI 24/25-0309 – Further Extension of Time [SEC=OFFICIAL]
Good morning Julie
I confirm as per your email of 6 October 2024, which was in response to my
request to for a 14-day extension of time, that you agreed to a 7-day
extension of time under section 15AA of the FOI Act.
This makes a decision on access on your request due tomorrow – 15 October
2024.
I advise that at this stage, I have only had a response to my internal
document search requests from one department and I am waiting on responses
from another 2. This means I am unlikely to be able to review responses,
assess any documents located and provide you with a decision on access by
COB tomorrow 15 October 2024.
I request you provide me with a further 3-day extension, making the due
date as Friday 18 October 2024.
If you agree to the small extension, your matter will remain in time and
your internal review rights will be upheld. If you disagree, I am required
to continue processing your matter, but you will loose your internal
review rights.
Could I please ask you to respond to above by COB 15 October 2024 and
advise if you agree or disagree to the requested extension.
Kind regards
Jennifer (JFD472)
Senior Freedom of Information Officer
Government, Risk & Legal – Complaints Management and FOI
General Counsel Division
National Disability Insurance Agency
T: (07) 1800 800 110
E: [6][NDIA request email]
[7]Title: NDIS delivered by the National Disability Insurance Agency
[8]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.
[9]Aboriginal and Torres Strait Islander flags graphic
Dear National Disability Insurance Agency,
Please pass this on to the person who conducts Freedom of Information reviews.
I am writing to request an internal review of National Disability Insurance Agency's handling of my FOI request 'ME/CFS - Treatments (second request)'.
The NDIA states that it has NO documents/information on how it determines whether or not a person is permanently disabled by ME/CFS.
I am of the opinion that information must exist somewhere within the NDIA that guides a planner/access staff member to make this decision. The opinion of the NDIA staff member is often at odds with the medical evidence submitted and the applicants clinical team.
I am of the opinion that such information must exist in order to support the NDIA staff members decision to refused people with access onto the NDIS on the basis of NOT being permanently affected despite medical advice to the contrary.
A full history of my FOI request and all correspondence is available on the Internet at this address: https://www.righttoknow.org.au/request/m...
Yours faithfully,
Julie Keys
Dear Julie Keys,
Thank you for your email, and my apologies that you were not satisfied
with the outcome of your FOI request.
Please note that due to the decision in your matter being made outside of
the 30-day statutory timeframe, you do not have internal review rights on
this matter. This is because once the statutory processing period elapses
we are deemed to have refused your request. We are therefore unable to
conduct an internal review of your request.
You do still retain your external review rights through the Office of the
Australian Information Commissioner (OAIC), you will find all the details
on how to begin that process in attachment B to the Notice of Decision
that you have already received on 17 October 2024, or by referring to the
OAIC website.
Again, my apologies.
Kind regards,
Rebecca
She/Her
Information Access – Triage and Early Resolution Team
Complaints Management and FOI Branch
National Disability Insurance Agency
[1][email address]
[2]NDIA logo
[3]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.
References
Visible links
1. mailto:[email address]
3. https://intranet.ndiastaff.ndia.gov.au/h...