Privacy and Confidentiality of Records Policy


The mission of DS NSW is to support people with DS, their families and carers by providing high quality information, advocacy and support.  In order to do this the organisation is required to collect personal information about staff, Members, people with Down Syndrome and their families, and a range of professionals (health, education, etc.) before and during the course of their contact with DS NSW. 

The organisation is committed to protecting privacy and works in line with the Australian Privacy Principles (January 2014) contained within the Privacy Act.


To protect privacy and sensitive information collected in the course of delivering the DS NSW mission, DS NSW staff will:

  • Ensure all information provided is treated in a confidential way.
  • Ensure confidential information will be kept in a responsible and safe way that protects privacy.
  • Ensure that matters are managed appropriately and in accordance with relevant Standards


  • DS NSW will ensure that people who are supported and/or their guardian are aware of the type of information that will be collected and stored and what that information will be used for. DS NSW must advise people that they may view the information that is specific to them. Such information may be viewed at a time convenient to both the person we support and the representative from DS NSW. The person supported or that person’s guardian can request that any such information that is demonstrably inaccurate or misleading, be amended as appropriate or removed. 
  • Staff, Members and others who have had contact with DS NSW may seek access to the personal information collected about them.  However, there will be occasions when access is denied.  These occasions would include a situation where access would have an unreasonable impact on the privacy of others, where access may result in a breach of the organisation’s duty of care where individuals have provided information in confidence.
  • Prior to commencing work at DS NSW, staff must sign a Confidentiality Agreement (or as included in an employment contract) that they will not breach the confidentiality of Members and others who have had contact with DS NSW. 
  • All documentation that is related to personal issues must be kept in a secure location.  This documentation must not be left on desks, bookshelves, or any other location where others may have access. 

Sensitive Information

Sensitive information refers to information such as a person's racial or ethnic origin, matters pertaining to the Family Court, religious or health information and requires a higher level of protection.

Sensitive Information can only be collected with an individual's consent to do so and can only be used when informed consent is obtained at the time the information was collected.

The standards of the National Privacy Principles are followed to regulate the way personal and sensitive information is managed.

Fair Collection - Collecting Information

(a)    Personal information must only be collected and used specifically for the purpose of the organisation's function.  The information collected is limited to only the amount of information that is necessary for the organisation’s activities.Information is collected through conversation with staff in a professional capacity, forms filled out by the staff and Members, surveys and information provided by outside services such as health and education professionals.

(b)    This information should be collected in a fair and unobtrusive way with the knowledge and consent of the individual.  All information provided is given voluntarily.

(c)     People providing the information are given appropriate access to their information and are advised about the purpose of the collection of the information. 

Use & Disclosure

(a)    Personal Information: Disclosure of information should only be for the purpose for which it was collected. This is with limited exceptions, and can only be used for a secondary purpose when it relates specifically to the primary purpose of the collection of the information.

It is not a breach of confidentiality to discuss aspects of a family/child etc. with staff, e.g. staff meetings.  However, no such discussions should take place in front of others.

Emails addresses received from members may be used for fundraising purposes. 

(b)    An individual must give consent for alternative use or disclosure of the information.

No information about a member is to be given out without a written or verbal authority from the parent or legal guardian, or person concerned.  This includes phone numbers or addresses.

Before any information is given out, the identity of the enquirer should be clearly established.
Written confirmation is needed of their name, address, phone number and the reason the information is needed.

(c)     Sensitive Information can only be used when informed consent is obtained at the time the information was collected.

DS NSW will obtain permission from the person involved, their parents or guardians before disclosing personal and sensitive information to a professional.  This includes early intervention teachers, speech therapists, occupational therapists, doctors and counsellors.

Data Quality and Correction

(a)    We take all reasonable precautions to ensure personal information that we collect, use and disclose is accurate, complete and up-to-date. However, the accuracy of that information depends to a large extent on the information that is provided by the individuals.

(b)    We rely on Members to provide correct information, by advising of any changes to the initial information provided.  This to ensure that personal information remains accurate, current and complete.  Members have the opportunity to update information at any time as well as annually when memberships are renewed.

Data Security

(a)    We will protect personal information from misuse, loss, change, unauthorised access /disclosure.

Information about the use of medication and Accident reports related to activities is held in areas not readily accessible.

Access by other agencies

When working with other agencies in relation to child protection issues, relevant information can be shared.  Safety of children is more important than protection of privacy in these situations.  Coordination with other organisations is required and the information to be shared must relate to the safety, welfare and wellbeing of a child or young person.

Information can also be provided when required by medical or emergency services to ensure the safety and wellbeing of the people we support where they are unable to give consent and the legal guardian is unable to be contacted.

Information may also be disclosed against the person’s wishes if legislation requires information, if information is subpoenaed for court proceedings, or in a matter of overriding public interest.

Do you want to make a complaint? 

We value your feedback and take all complaints and general feedback about our staff and services seriously.  Any type of feedback offered to us is used to enhance our performance, service delivery and client satisfaction.

Ways to make a complaint.

If you can, we encourage you to contact Down Syndrome NSW directly to make a complaint either by phone or email.  This give us an opportunity to address the problem directly with you, while observing the Privacy and Client Safety Protocols that protect all of our membership. 

We will talk to you directly about your complaint and may ask you to complete a complaint form, which we will provide upon request.  When we have ascertained the nature of your complaint, it will be dealt with according to our External Feedback and Complaints Policy and Procedures, a copy of which can be sent to you upon request.

PH; 9841 4444

Make a complaint externally.

We encourage you to make your complaint directly with us but if you feel you would like to take your complaint outside our association, you can contact the Ombudsman Community Services Intake team, between 9am to 4pm on 02 9286 1000 or toll free on 1800 451 524 . You can also use the Online Complaints Form to submit a complaint for assessment.

Visit the Ombudsman


Implemented January 2014 | Reviewed March 2018




© 2017 Down Syndrome NSW

Reg Charity No. CFN11321 | ABN 39 023 586 389