* 1. Thank you for your interest in this research project. We’re looking forward to reading what you have to say about being a family member, carer, or other close associate of a person with lived experience of disability. Here’s the information that you need to know about the study. Please read this information, and if you’re happy to take part in the study, please complete the consent section.

What is the study about?
We are researching the way that the law responds to people who behave in ways that are viewed by some members of society as challenging, different or difficult. We are talking to a range of people and we are interested in your life experiences and thoughts.
Who is conducting this study?
Our names are Professor Isabel Karpin and Dr Karen O’Connell. We are both academics at the Faculty of Law, University of Technology, Sydney (UTS).

Why should I participate?
This research will allow us to consider whether the laws we have are working or whether they need to be changed. We will look at laws that have the effect of protecting or excluding people with disabilities and make suggestions about how they could be improved. Speaking to people who have experience as a carer, family member or other close associate of a person with lived experience of disability allows us to understand how the law affects people day to day. Your knowledge and expertise are very important to this research project. 

What does the survey involve?
The survey will involve approximately 30 minutes of your time. You do not have to say yes. Even if you agree, you can change your mind at any time and stop completing the survey without any consequences.

Are there any risks, costs or personal benefits?
There are no associated risks and no cost for you to take part. However, if you do experience any distress as a result of your participation, Lifeline (telephone 13 11 14) has trained volunteers ready to listen, and provide support and referrals if necessary.

Rights and confidentiality
The survey is confidential and there will be little risk to your privacy because the research has been carefully designed. The survey answers will only be accessible to us, and any information which could possibly identify you will be removed from any publication. No one, including the researchers, will be able to identify the survey participants. 

Our contact information
Want to contact us? Please do. Professor Karpin can be contacted on 02 9514 3179 or at, and Dr O’Connell can be contacted on 02 9514 8079 or at If you would like to talk to someone who is not connected with the research, you may contact the Research Ethics Officer on 02 9514 9772 or and quote this number: 2015000160.


If you’re happy to take part in the study, please tick YES to continue.

I have been informed of, and understand, the purpose of the study.
  • I have had the opportunity to ask questions about the study and am happy with the answers.
  • I understand that there are no known risks involved in the study.
  • I understand that I can stop participating any time without giving a reason and with no consequence for me.
  • I have been informed that all personal information will be kept confidential and any identifiable information will not be used in published material.