Prader-Willi syndrome
Dear National Disability Insurance Agency,
Please provide all documents, research papers, disability snapshot document and assessment tools that mention or relate to Prader-Willi syndrome.
Yours faithfully,
Tessa Kelton
Thank you for your email to the National Disability Insurance Agency
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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]
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.
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11. mailto:[NDIA request email]
Dear Tessa Kelton
Thank you for your emails of 25 November 2025 with multiple Freedom of Information requests.
I'm sorry for the delay in getting back in touch on these matters. Unfortunately I've overlooked these in my list.
I just wanted to let you know that I am now processing all six of your matters and will aim to get decision letters to you as soon as possible.
Very sorry for the delay.
Kind regards
Cindy
Cindy - CGN062
Senior Freedom of Information Officer
Complaints Management & FOI Branch
General Counsel Division
National Disability Insurance Agency
E [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.
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.
-----Original Message-----
From: Tess <[email address]>
Sent: Monday, 25 November 2024 10:15 PM
To: foi <[NDIA request email]>
Subject: Freedom of Information request - Documents Related to Unlisted Genetic Disorders
[You don't often get email from [email address]. Learn why this is important at https://aka.ms/LearnAboutSenderIdentific... ]
Dear National Disability Insurance Agency,
Please provide all documents, in full, pertaining to Unlisted Genetic Disorders
1. All documents, policies, and internal guidelines that outline the assessment criteria and decision-making process used by the National Disability Insurance Agency (NDIA) for determining eligibility for individuals with genetic disorders not listed on List A, List B, List C, or List D.
2. Assessment tools and methodologies applied to evaluate these unlisted genetic disorders for NDIS access and associated funding decisions.
3. Any "disability snapshot" or related summary documents used in these assessments for unlisted genetic disorders.
Yours faithfully,
Tessa Kelton
-------------------------------------------------------------------
Please use this email address for all replies to this request:
Is [NDIA request email] the wrong address for Freedom of Information requests to National Disability Insurance Agency? If so, please contact us using this form:
https://www.righttoknow.org.au/change_re...
This request has been made by an individual using Right to Know. This message and any reply that you make will be published on the internet. More information on how Right to Know works can be found at:
https://www.righttoknow.org.au/help/offi...
Please note that in some cases publication of requests and responses will be delayed.
If you find this service useful as an FOI officer, please ask your web manager to link to us from your organisation's FOI page.
-------------------------------------------------------------------
********************************************************************** IMPORTANT: This e-mail is for the use of the intended recipient only and may contain information that is confidential, commercially valuable and/or subject to legal or parliamentary privilege. If you are not the intended recipient you are notified that any review, re-transmission, disclosure, dissemination or other use of, or taking of any action in reliance upon, this information is prohibited and may result in severe penalties. If you have received this e-mail in error please notify the sender immediately and delete all electronic and hard copies of this transmission together with any attachments. Please consider the environment before printing this e-mail **********************************************************************
Dear Tessa Kelton
Thank you for your emails of 25 November 2025 with multiple Freedom of Information requests.
I'm sorry for the delay in getting back in touch on these matters. Unfortunately I've overlooked these in my list.
I just wanted to let you know that I am now processing all six of your matters and will aim to get decision letters to you as soon as possible.
Very sorry for the delay.
Kind regards
Cindy
Cindy - CGN062
Senior Freedom of Information Officer
Complaints Management & FOI Branch
General Counsel Division
National Disability Insurance Agency
E [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.
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.
-----Original Message-----
From: Tess <[email address]>
Sent: Monday, 25 November 2024 10:15 PM
To: foi <[NDIA request email]>
Subject: Freedom of Information request - Documents Related to Unlisted Genetic Disorders
[You don't often get email from [email address]. Learn why this is important at https://aka.ms/LearnAboutSenderIdentific... ]
Dear National Disability Insurance Agency,
Please provide all documents, in full, pertaining to Unlisted Genetic Disorders
1. All documents, policies, and internal guidelines that outline the assessment criteria and decision-making process used by the National Disability Insurance Agency (NDIA) for determining eligibility for individuals with genetic disorders not listed on List A, List B, List C, or List D.
2. Assessment tools and methodologies applied to evaluate these unlisted genetic disorders for NDIS access and associated funding decisions.
3. Any "disability snapshot" or related summary documents used in these assessments for unlisted genetic disorders.
Yours faithfully,
Tessa Kelton
-------------------------------------------------------------------
Please use this email address for all replies to this request:
Is [NDIA request email] the wrong address for Freedom of Information requests to National Disability Insurance Agency? If so, please contact us using this form:
https://www.righttoknow.org.au/change_re...
This request has been made by an individual using Right to Know. This message and any reply that you make will be published on the internet. More information on how Right to Know works can be found at:
https://www.righttoknow.org.au/help/offi...
Please note that in some cases publication of requests and responses will be delayed.
If you find this service useful as an FOI officer, please ask your web manager to link to us from your organisation's FOI page.
-------------------------------------------------------------------
********************************************************************** IMPORTANT: This e-mail is for the use of the intended recipient only and may contain information that is confidential, commercially valuable and/or subject to legal or parliamentary privilege. If you are not the intended recipient you are notified that any review, re-transmission, disclosure, dissemination or other use of, or taking of any action in reliance upon, this information is prohibited and may result in severe penalties. If you have received this e-mail in error please notify the sender immediately and delete all electronic and hard copies of this transmission together with any attachments. Please consider the environment before printing this e-mail **********************************************************************
Dear Tessa Kelton
Thank you for your emails of 25 November 2025 with multiple Freedom of Information requests.
I'm sorry for the delay in getting back in touch on these matters. Unfortunately I've overlooked these in my list.
I just wanted to let you know that I am now processing all six of your matters and will aim to get decision letters to you as soon as possible.
Very sorry for the delay.
Kind regards
Cindy
Cindy - CGN062
Senior Freedom of Information Officer
Complaints Management & FOI Branch
General Counsel Division
National Disability Insurance Agency
E [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.
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.
-----Original Message-----
From: Tess <[email address]>
Sent: Monday, 25 November 2024 10:15 PM
To: foi <[NDIA request email]>
Subject: Freedom of Information request - Documents Related to Unlisted Genetic Disorders
[You don't often get email from [email address]. Learn why this is important at https://aka.ms/LearnAboutSenderIdentific... ]
Dear National Disability Insurance Agency,
Please provide all documents, in full, pertaining to Unlisted Genetic Disorders
1. All documents, policies, and internal guidelines that outline the assessment criteria and decision-making process used by the National Disability Insurance Agency (NDIA) for determining eligibility for individuals with genetic disorders not listed on List A, List B, List C, or List D.
2. Assessment tools and methodologies applied to evaluate these unlisted genetic disorders for NDIS access and associated funding decisions.
3. Any "disability snapshot" or related summary documents used in these assessments for unlisted genetic disorders.
Yours faithfully,
Tessa Kelton
-------------------------------------------------------------------
Please use this email address for all replies to this request:
Is [NDIA request email] the wrong address for Freedom of Information requests to National Disability Insurance Agency? If so, please contact us using this form:
https://www.righttoknow.org.au/change_re...
This request has been made by an individual using Right to Know. This message and any reply that you make will be published on the internet. More information on how Right to Know works can be found at:
https://www.righttoknow.org.au/help/offi...
Please note that in some cases publication of requests and responses will be delayed.
If you find this service useful as an FOI officer, please ask your web manager to link to us from your organisation's FOI page.
-------------------------------------------------------------------
********************************************************************** IMPORTANT: This e-mail is for the use of the intended recipient only and may contain information that is confidential, commercially valuable and/or subject to legal or parliamentary privilege. If you are not the intended recipient you are notified that any review, re-transmission, disclosure, dissemination or other use of, or taking of any action in reliance upon, this information is prohibited and may result in severe penalties. If you have received this e-mail in error please notify the sender immediately and delete all electronic and hard copies of this transmission together with any attachments. Please consider the environment before printing this e-mail **********************************************************************
Dear Tessa Kelton
Thank you for your emails of 25 November 2025 with multiple Freedom of Information requests.
I'm sorry for the delay in getting back in touch on these matters. Unfortunately I've overlooked these in my list.
I just wanted to let you know that I am now processing all six of your matters and will aim to get decision letters to you as soon as possible.
Very sorry for the delay.
Kind regards
Cindy
Cindy - CGN062
Senior Freedom of Information Officer
Complaints Management & FOI Branch
General Counsel Division
National Disability Insurance Agency
E [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.
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.
-----Original Message-----
From: Tess <[email address]>
Sent: Monday, 25 November 2024 10:15 PM
To: foi <[NDIA request email]>
Subject: Freedom of Information request - Documents Related to Unlisted Genetic Disorders
[You don't often get email from [email address]. Learn why this is important at https://aka.ms/LearnAboutSenderIdentific... ]
Dear National Disability Insurance Agency,
Please provide all documents, in full, pertaining to Unlisted Genetic Disorders
1. All documents, policies, and internal guidelines that outline the assessment criteria and decision-making process used by the National Disability Insurance Agency (NDIA) for determining eligibility for individuals with genetic disorders not listed on List A, List B, List C, or List D.
2. Assessment tools and methodologies applied to evaluate these unlisted genetic disorders for NDIS access and associated funding decisions.
3. Any "disability snapshot" or related summary documents used in these assessments for unlisted genetic disorders.
Yours faithfully,
Tessa Kelton
-------------------------------------------------------------------
Please use this email address for all replies to this request:
Is [NDIA request email] the wrong address for Freedom of Information requests to National Disability Insurance Agency? If so, please contact us using this form:
https://www.righttoknow.org.au/change_re...
This request has been made by an individual using Right to Know. This message and any reply that you make will be published on the internet. More information on how Right to Know works can be found at:
https://www.righttoknow.org.au/help/offi...
Please note that in some cases publication of requests and responses will be delayed.
If you find this service useful as an FOI officer, please ask your web manager to link to us from your organisation's FOI page.
-------------------------------------------------------------------
********************************************************************** IMPORTANT: This e-mail is for the use of the intended recipient only and may contain information that is confidential, commercially valuable and/or subject to legal or parliamentary privilege. If you are not the intended recipient you are notified that any review, re-transmission, disclosure, dissemination or other use of, or taking of any action in reliance upon, this information is prohibited and may result in severe penalties. If you have received this e-mail in error please notify the sender immediately and delete all electronic and hard copies of this transmission together with any attachments. Please consider the environment before printing this e-mail **********************************************************************
Dear Tessa Kelton
Thank you for your emails of 25 November 2025 with multiple Freedom of Information requests.
I'm sorry for the delay in getting back in touch on these matters. Unfortunately I've overlooked these in my list.
I just wanted to let you know that I am now processing all six of your matters and will aim to get decision letters to you as soon as possible.
Very sorry for the delay.
Kind regards
Cindy
Cindy - CGN062
Senior Freedom of Information Officer
Complaints Management & FOI Branch
General Counsel Division
National Disability Insurance Agency
E [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.
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.
-----Original Message-----
From: Tess <[email address]>
Sent: Monday, 25 November 2024 10:15 PM
To: foi <[NDIA request email]>
Subject: Freedom of Information request - Documents Related to Unlisted Genetic Disorders
[You don't often get email from [email address]. Learn why this is important at https://aka.ms/LearnAboutSenderIdentific... ]
Dear National Disability Insurance Agency,
Please provide all documents, in full, pertaining to Unlisted Genetic Disorders
1. All documents, policies, and internal guidelines that outline the assessment criteria and decision-making process used by the National Disability Insurance Agency (NDIA) for determining eligibility for individuals with genetic disorders not listed on List A, List B, List C, or List D.
2. Assessment tools and methodologies applied to evaluate these unlisted genetic disorders for NDIS access and associated funding decisions.
3. Any "disability snapshot" or related summary documents used in these assessments for unlisted genetic disorders.
Yours faithfully,
Tessa Kelton
-------------------------------------------------------------------
Please use this email address for all replies to this request:
Is [NDIA request email] the wrong address for Freedom of Information requests to National Disability Insurance Agency? If so, please contact us using this form:
https://www.righttoknow.org.au/change_re...
This request has been made by an individual using Right to Know. This message and any reply that you make will be published on the internet. More information on how Right to Know works can be found at:
https://www.righttoknow.org.au/help/offi...
Please note that in some cases publication of requests and responses will be delayed.
If you find this service useful as an FOI officer, please ask your web manager to link to us from your organisation's FOI page.
-------------------------------------------------------------------
********************************************************************** IMPORTANT: This e-mail is for the use of the intended recipient only and may contain information that is confidential, commercially valuable and/or subject to legal or parliamentary privilege. If you are not the intended recipient you are notified that any review, re-transmission, disclosure, dissemination or other use of, or taking of any action in reliance upon, this information is prohibited and may result in severe penalties. If you have received this e-mail in error please notify the sender immediately and delete all electronic and hard copies of this transmission together with any attachments. Please consider the environment before printing this e-mail **********************************************************************
Dear Tessa Kelton
Thank you for your emails of 25 November 2025 with multiple Freedom of Information requests.
I'm sorry for the delay in getting back in touch on these matters. Unfortunately I've overlooked these in my list.
I just wanted to let you know that I am now processing all six of your matters and will aim to get decision letters to you as soon as possible.
Very sorry for the delay.
Kind regards
Cindy
Cindy - CGN062
Senior Freedom of Information Officer
Complaints Management & FOI Branch
General Counsel Division
National Disability Insurance Agency
E [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.
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.
-----Original Message-----
From: Tess <[email address]>
Sent: Monday, 25 November 2024 10:15 PM
To: foi <[NDIA request email]>
Subject: Freedom of Information request - Documents Related to Unlisted Genetic Disorders
[You don't often get email from [email address]. Learn why this is important at https://aka.ms/LearnAboutSenderIdentific... ]
Dear National Disability Insurance Agency,
Please provide all documents, in full, pertaining to Unlisted Genetic Disorders
1. All documents, policies, and internal guidelines that outline the assessment criteria and decision-making process used by the National Disability Insurance Agency (NDIA) for determining eligibility for individuals with genetic disorders not listed on List A, List B, List C, or List D.
2. Assessment tools and methodologies applied to evaluate these unlisted genetic disorders for NDIS access and associated funding decisions.
3. Any "disability snapshot" or related summary documents used in these assessments for unlisted genetic disorders.
Yours faithfully,
Tessa Kelton
-------------------------------------------------------------------
Please use this email address for all replies to this request:
Is [NDIA request email] the wrong address for Freedom of Information requests to National Disability Insurance Agency? If so, please contact us using this form:
https://www.righttoknow.org.au/change_re...
This request has been made by an individual using Right to Know. This message and any reply that you make will be published on the internet. More information on how Right to Know works can be found at:
https://www.righttoknow.org.au/help/offi...
Please note that in some cases publication of requests and responses will be delayed.
If you find this service useful as an FOI officer, please ask your web manager to link to us from your organisation's FOI page.
-------------------------------------------------------------------
********************************************************************** IMPORTANT: This e-mail is for the use of the intended recipient only and may contain information that is confidential, commercially valuable and/or subject to legal or parliamentary privilege. If you are not the intended recipient you are notified that any review, re-transmission, disclosure, dissemination or other use of, or taking of any action in reliance upon, this information is prohibited and may result in severe penalties. If you have received this e-mail in error please notify the sender immediately and delete all electronic and hard copies of this transmission together with any attachments. Please consider the environment before printing this e-mail **********************************************************************
Dear Tessa Kelton
Thank you for your request for information on 25 November 2025, and I’m
sorry it’s taken so long to process your request.
Searches have shown that only one document relating to Prader-Willi
syndrome, which is from our disability snapshot library.
This document has already previously been released via FOI and so is
publicly available via the Disclosure Log.
As there are no further documents available, please advice if you would
like to withdraw your request.
Please find attached a copy of this document. If you need this in a
different format, please let me know.
Please contact us at [1][NDIA request email] if you have any questions or
require help.
Thank you.
Kind regards
Cindy
Cindy – CGN062
Senior 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
-----Original Message-----
From: Tess <[6][FOI #12375 email]>
Sent: Monday, 25 November 2024 10:07 PM
To: foi <[7][NDIA request email]>
Subject: Freedom of Information request - Prader-Willi syndrome
[You don't often get email from
[8][FOI #12375 email]. Learn why this is
important at [9]https://aka.ms/LearnAboutSenderIdentific... ]
Dear National Disability Insurance Agency,
Please provide all documents, research papers, disability snapshot
document and assessment tools that mention or relate to Prader-Willi
syndrome.
Yours faithfully,
Tessa Kelton
-------------------------------------------------------------------
Please use this email address for all replies to this request:
[10][FOI #12375 email]
**********************************************************************
IMPORTANT: This e-mail is for the use of the intended recipient only and
may contain information that is confidential, commercially valuable and/or
subject to legal or parliamentary privilege. If you are not the intended
recipient you are notified that any review, re-transmission, disclosure,
dissemination or other use of, or taking of any action in reliance upon,
this information is prohibited and may result in severe penalties. If you
have received this e-mail in error please notify the sender immediately
and delete all electronic and hard copies of this transmission together
with any attachments. Please consider the environment before printing this
e-mail
**********************************************************************
References
Visible links
1. mailto:[NDIA request email]
2. mailto:[NDIA request email]
6. mailto:[FOI #12375 email]
7. mailto:[NDIA request email]
8. mailto:[FOI #12375 email]
9. https://aka.ms/LearnAboutSenderIdentific...
10. mailto:[FOI #12375 email]
Emily Lacey left an annotation ()
Hi Tessa - You can find the Prader-Willi Syndrome "Disability Snapshot" here, it's DOCUMENT 18 and starts on page 234: https://www.righttoknow.org.au/request/a...