Privacy Policy

Privacy, Dignity and Confidentiality




To outline MDNSW’s commitment to protecting the privacy, dignity and confidentiality of all clients and members.



This policy applies to the personal information of all MDNSW Clients, members and other individuals not in an employment relationship with MDNSW.

This policy does not apply to employee records when that information is collected is for employment purposes. It does not apply to the member and service records of an individual who may be an employee, but is also a member or client of MDNSW.  It also applies to individuals who apply to MDNSW for employment but never enter into an employment relationship.



This document is intended as a summary of MDNSW’s commitment to privacy.  If a situation arises that is not covered within this policy or if this policy is inconsistent with legislation, The Privacy Amendment, Private Sector, Act 2000 and other relevant legislation will take precedence over this policy.



Personal information is any information that is recorded with information that could reasonably be used to identify an individual. This may include a person’s name, address and telephone number.  Sometimes other information about a person’s services, disability or needs could be used to identify an individual without specific identifiers.  This is also personal information.

Sensitive information is a subset of personal information.  It means information or opinions about a person’s racial or ethnic origin, political opinions, membership of a political association, religious beliefs or affiliations, philosophical beliefs, membership of a professional or trade association, membership of a trade union, sexual preferences or practices or criminal record.

Sensitive information also includes health information.  For any organisation providing a health service, sensitive information includes all personal information and sensitive information defined previously.  It also includes: medical information, information about a person’s disability, admission and discharge dates, billing information and Medicare number, information generated by a health service provider (eg notes, opinions about an individual and their health.

A Client is a person who approaches the Association seeking information, support, referral, membership, advocacy or other services.



MDNSW provides a variety of services to support people with neuromuscular disorders and their families and carers and to help improve their quality of life.  Personal and sensitive information is a key element of our commitment to protect and enhance the dignity and quality of life of our clients.



MDNSW will obtain consent from individuals before personal or sensitive information is collected.

A Client may choose not to provide their personal or sensitive information to MDNSW or to decline to permit MDNSW to use their personal information for some or all of the purposes outlined in this policy.  If a client declines consent, MDNSW will inform them of any impact this may have on the ability of MDNSW to provide their service.  Failure to provide certain information or permit use of the information for certain purposes may prevent MDNSW from providing a service.


Collection, Use and Disclosure

MDNSW only collects personal or sensitive information that is necessary for its functions and activities.

MDNSW will only collect personal information by lawful means and will not collect information in any unreasonably intrusive way.

MDNSW will generally collect information directly from the client, but may also collect information from third parties including families, carers and other service providers.  Where information is collected from third parties, MDNSW will use its reasonable endeavours to:

  • Ensure the information is accurate
  • Inform the client of the information collected
  • Inform the client of the matters outlined below in the next subclause

At or before the time of collection (or if that is not practicable then immediately after collection) of personal or sensitive information MDNSW will take reasonable steps to ensure the person is aware of:

  • The identity of the organisation
  • Their right to access the information
  • The purpose for which the information is collected
  • The organisations (or types of organisations) to which the organisation usually discloses information of that kind
  • Any law that requires the particular information to be collected
  • The main consequence for the individual if all or part of the information is not provided.

MDNSW primarily collects personal information to:

  • Facilitate the distribution of information about neuromuscular disorders and relevant services.
  • Plan and provide services to clients
  • Facilitate the distribution of information about fundraising events and opportunities to donors and supporters.

Secondary purposes for which information is collected include to:

  • Inform clients of MDNSW’s products and services and other products and services that are likely to be of interest.
  • Keep accurate financial records of Association membership.
  • Keep accurate records of individuals and family members to whom the
  • Association is providing services.
  • Keep accurate records of individuals when the Association provides advocacy services on their behalf.

The Association undertakes to only use information collected for the purposes for which it is collected.

MDNSW may disclose personal and sensitive information:

  • Where that is necessary to provide the services
  • In an emergency where failure to disclose the information may cause adverse outcomes for the client
  • To organisations providing services for MDNSW such as providing legal, financial, reporting, surveying or research services provided those organisations also undertake to protect the confidentiality of that information.

Where information is disclosed to other organisations under the terms of this policy, the information provided must be kept to a minimum having regard to the purpose for which it is being disclosed.

Where a client is incapable of making decisions about the provision or disclosure a Responsible person as defined by legislation may make this decision on behalf of the client.

MDNSW encourages family support and communication between family members.  However MDNSW will not provide personal information about a client aged over 16 years to family members without the individual’s consent.

Information may be disclosed for other purposes permitted by privacy legislation including but not limited to where legislation requires that the information be released, MDNSW is subpoenaed to provide information for court proceedings, or there is an overwhelming public interest in disclosing the information.


Data Quality

The Association will take reasonable steps to ensure that the information collected is accurate, complete and up to date.


Data Security

The Association undertakes to keep the personal information it collects in a secure place.

The Association will grant access only to those staff and authorised volunteers who require that personal information as part of their job requirements.

The Association undertakes to destroy personal information when it is no longer required in accordance with our Document Retention, Archiving and Disposal Policy.



This privacy policy is available on the Association’s website  This policy is also displayed in the Association offices and copies are available on request.

The Association has in place a complaints procedure that is to be used to investigate and manage complaints regarding privacy and confidentiality.


Access and Correction

Apart from relevant staff who access information in the performance of their duties, personal information can be accessed and/or changed only by the person to whom it relates.

A copy of personal information collected by the Association can be obtained by contacting the Association’s administration section via:

Telephone, quoting membership or client number and address, or other means of verifying the individual.
A request in writing, quoting membership or client number and address.
When requested, a copy of your personal information will be posted within 30 days of the request being received.

Personal information can be amended via:

  • Telephone, quoting membership or client number and address, or other means of verifying the individual.
  • A request in writing quoting membership or client number and address, or by completing a membership renewal form.

Personal and sensitive information may be withheld from clients in situations where the Association considers that this information may cause serious threat to the psychological and/or physical health of the client.

Personal, health and sensitive information may also be withheld in other limited circumstances provided for in Privacy Legislation.

Where information is withheld for any reason, MDNSW will provide the individual a written statement of why the information has been withheld.

Personal and sensitive information will be supplied under the direction of an appropriate Association staff member. This information will not be unreasonably withheld.

If the person establishes that the information held by MDNSW is not accurate, complete or up-to-date, MDNSW will take reasonable steps to correct the information.

If there is disagreement about whether information is accurate, complete, or up-to-date, and the individual asks to associate with the information a statement claiming that the information is not accurate, complete or up-to-date, MDNSW will do so.



The Association does not use the identification or reference numbers of other organisations.


De-identified Data

MDNSW uses de-identified data to:

  • Report statistical information to funding bodies and donors.
  • Conduct research and service improvement initiatives.

This information is not personal or sensitive because it is de-identified.  When using data for this purpose MDNSW will ensure that no client could reasonably be identified from the data used even after primary identifiers have been removed.



Where it is lawful and practicable individuals may interact with MDNSW without identifying themselves.

Accessing member services and other direct services will not be practicable without individuals identifying themselves.


Trans-border data flows

MDNSW will only transfer personal or sensitive information about an individual to someone (other than MDNSW or the individual) who is in a foreign country if:

  • We reasonably believe the recipient is subject to a law, binding scheme or contract which effectively upholds principles for fair handling of the information that are substantially similar to the National Privacy Principles; or
  • The individual consents to the transfer; or
  • The transfer is necessary for the performance of a contract or pre-contractual measures between the individual and MDNSW; or
  • The transfer is necessary for the conclusion or performance of a contract concluded in the interest of the individual between the organisation and a third party; or
  • All of the following apply:
    • The transfer is for the benefit of the individual
    • It is impracticable to obtain the consent of the individual to that transfer
    • If it were practicable to obtain such consent, the individual would be likely to give it; or
  • The organisation has taken reasonable steps to ensure that the information it has transferred will not be held, used, or disclosed by the recipient of the information inconsistently with the National Privacy Principles.


Health and other Sensitive Information

MDNSW will collect health and other sensitive information about its members and clients in order to provide health services to them.

Health and other sensitive information will only be collected from individuals who are members, who have regular contact with us in connection with our activities, or who obtain health services from us.


Personal Dignity and Privacy

MDNSW provides services of a very personal nature.  Where MDNSW is assisting with dressing, undressing, bathing and other personal services, MDNSW will provide clients with as much privacy as possible to protect their personal dignity by closing door and using screens.  MDNSW will ensure all staff providing personal care services are appropriately trained and deliver services sensitively and professionally.



Only de-identified data that cannot reasonably be used to identify an individual will be used for research purposes.  Any research requiring identification of a client requires their explicit consent.


Donor Personal Information Disclosure

Personal information may be disclosed to third parties for marketing purposes: we may provide your contact details to other like-minded organisations to contact you with information that may be of interest to you. From time to time, we participate in data collectives where we share your personal information (other than sensitive information) with other organisations.

If you would prefer not to receive communications from other organisations, please let us know please contact us at Muscular Dystrophy NSW – 80 Betty Cuthbert Drive, Lidcombe, 2141 Tel: +612 9888 5711 and email:

Otherwise, we will only share your personal and sensitive information in accordance with your consent and instructions, as provided through the exclusions set out in the Australian Privacy Principles, or in accordance with the specific collection statement provided to you by us at or near the time of collection of your personal and sensitive information.


Opting out of direct marketing communications

Where we use your personal information to send you marketing and promotional information by post, email or telephone, you will have the opportunity to opt-out of receiving such information. If you do not wish to receive direct marketing communications from us, please contact Muscular Dystrophy NSW – 80 Betty Cuthbert Drive, Lidcombe, 2141 Tel: + 612 9888 5711  or via email: If you do not elect to opt out, we will assume we have your implied consent to receive similar information and communications in the future.


Updating your personal information

You may ask us to update or correct the personal information we hold about you at any time. We will take reasonable steps to verify your identity before granting access or making any corrections to your information. We also have obligations to take reasonable steps to correct personal information we hold when we are satisfied that it is inaccurate, out-of-date, incomplete, irrelevant or misleading for the purpose for which it is held.

If you require access to, or wish to update your personal information, please contact us at Muscular dystrophy NSW, 80 Betty Cuthbert Drive, Lidcombe, 2141 Tel: + 612 9888 5711 and email:



If you have any queries or would like to make a complaint regarding relating to our Privacy Policy or the manner in which we handle your personal information, please contact Muscular Dystrophy NSW – 80 Betty Cuthbert Drive, Lidcombe, 2141 Tel: + 612 9888 5711 and email: We endeavour to respond to complaints and queries within fourteen days of their receipt. If you are dissatisfied with our response, you may refer the matter to the Australian Information (Privacy) Commissioner (see ).

If you do not provide some or all of the personal information requested, we may not be able to offer you services or provide you with information about our causes, events, programs and projects.


Last reviewed: 24/02/2014