ROLL101 supports, endorses and practises all 10 National Privacy Principles, as detailed in Information Sheet 1A provided by the Australian Government Office of the Privacy Commissioner.

When someone joins or makes contact with the ROLLL101, we collect relevant personal details so that we can provide information and support. These contact details are added to our secure, restricted-access computer database. We do not share identifying information about members with any other parties unless we have written permission to do so.

More information on our privacy practices, which details how we treat and use the information provided to us, is presented in the document ‚What happens to your information‚ For further information, please contact the ROLL101 Office.

What happens to your information?

At ROLL101 Incorporated, we treat any information you give us, or we give you, with the utmost respect and confidentiality. Our privacy policy incorporates the Australian Government‚ National Privacy Principles, which include particular provisions in relation to sensitive information. The policy may be viewed on the ROLL101 website or obtained by contacting the ROLL101 office.

When you contact the ROLL101, we can talk to you without having to know your name or any personal details. We will make every effort to provide the information and support you need. If you prefer to remain anonymous, we will certainly respect that wish

What information might you be asked to provide?

There are three different levels of information that we may request from you.
1. Contact details
Simple contact details allow us to:
  • Inform you about services that are local to you and
  • mail or email information to you.
2. Basic personal information
If you choose to become a member of the ROLL101, we do need some basic information.
This may include such details as the name, birth date and general information about other family members. You are also welcome to provide additional information, as relevant, to help us meet your needs.
3. More comprehensive personal information
If you wish to obtain assistance from or through the ROLL101, we will require additional information, such as other services you receive, your particular issues and support networks, and more detailed health-related information. This information is stored securely and, as with any information we collect, is available only to the ROLL101 person who needs the information in order to offer a specific service (for example, the counsellor or Family Advocate).

Confidentiality and consent to share information

The information you provide is stored securely and is shared only in accordance with the ROLL101 privacy policy. Your information is available only on an ‚as needed‚ basis. In other words, other ROLL101 staff, committee members or group members are not able to access your information unless you have given consent.

Similarly, authorised ROLL101 personnel will only share your information with other people, including workers in other organisations, if you have given written consent or, if this is not possible, if you have given verbal consent that is documented at the next available opportunity. In this latter instance, we will send you a consent form and ask that you sign it and return it to us for our records.

Our Family Advocate is required by her professional Code of Ethics to keep professional notes of her contact with individuals and families. We intend that you experience openness, trust and respect in all your dealings with the ROLL101. You are entitled to ask for information about what has been documented. You are also entitled to see the contact notes, although the documents themselves remain the property of the ROLL101. You are not able to access information that relates to another person; you are only permitted to access information relating to yourself or your dependent children.

The two most common reasons for the ROLL101 to ask your permission to share information are:
  • So that families affected by a member suffering serious illness or catastrophic injury can meet and provide mutual support; and
  • So that the Family Advocate can adequately support you and advocate on your behalf ‚ for example, by making referrals to other services or obtaining relevant information from them.

Under what circumstances can my information be shared without my consent?

Information will only be shared without your consent in order to ensure safety in situations where you or another person may be in danger. Even in these circumstances, ROLL101 will endeavour to seek your consent or explain an intention to pass on information (for example, to an emergency service) if it is safe and appropriate to do so. We will also seek to avoid a situation escalating to this level if at all possible.

As you can imagine, it is highly unlikely that such situations will occur in your dealings with ROLL101. However, it is important that you are aware of this rare exception to our consent requirement.

Collection of statistical information

Much of the information that ROLL101 collects is compiled into statistical reports. The information helps us to identify gaps that we may be able to respond to in the future. Accurate and non-personal statistical information is also essential for informing health authorities and professionals. In addition, we rely on such information when applying for funding from government and other organisations.

Your personal identification is removed from all statistical records and reports, and all data is aggregated (for example, the data may show the number of people living in a particular state, but not the names or other identifying details of those people).

Are there any other ways my information may be used?

There are two other possible ways that your information may be used. Firstly, ROLL101 participates in forums, conferences and other educational opportunities in order to increase awareness of the impact of serious illness and catastrophic injuries on young children. On these occasions, it is often helpful to provide examples of real life experiences, as this gives more meaning to the technical and academic information that is being presented.

Secondly, our Family Advocate receives regular professional guidance in order to help her work most effectively and appropriately with ROLL101 individuals and families. This guidance is provided by a senior clinician with extensive experience in nursing, counselling and social work, particularly in the field of disability. As part of this process, the Family Advocate may sometimes discuss particular individual or family circumstances that she has encountered in her work with ROLL101.

In both of these circumstances, the purpose is to improve community awareness of the impact of serious illness and catastrophic injury and to ensure that the ROLL101 is able to offer you the most effective, respectful and accountable individual support possible.

Whenever the situation allows, we will ask for your consent before sharing your information in this way. Any shared information will be de-identified (so that you remain anonymous). As it is not always possible to seek your consent (for example, if someone attending a conference asks a question relating to an aspect of your condition), ensuring your anonymity is a priority.

However, if you do not wish to have your experiences shared under these circumstances, even with anonymity, please advise ROLL101 in writing. Your wishes will be respected.