Annex II - Information Sheet & Free and Informed Consent Form

Information Sheet

This information is provided so that you can make a decision about whether or not you want to participate in this study. We are giving you a lot of information because we want you to be able to make the decision that is best for you.

Sponsors

The study is being sponsored by:

• [insert the names of each of the partner organizations of people with disabilities participating in the study, in alphabetical order, with a separate bullet point for each organization]
• Disability Rights Promotion International (DRPI) which is a research project based at York University in Toronto, Canada

Why are we doing this study?

We are collecting information about the lives and experiences of people with disabilities by talking directly to people with disabilities. We want to see if their human rights are being respected. The information we collect will be studied and reports will be written. The names of participants will not be mentioned in the reports unless they have given us clear permission to do so. The reports will be available to organizations of people with disabilities, other groups working to improve the lives of people with disabilities, the media and governments.

The reports made will be used to:

• let people know about violations of the rights of people with disabilities
• help stop human rights violations
• provide facts to back up arguments for changes in laws, policies, and programs to improve the lives of people with disabilities
• keep track of the steps that the government has taken or has failed to take in order to fulfill the promises it has made to people with disabilities when it signed agreements at the United Nations saying that it would protect, promote and fulfill the rights of people with disabilities

What will happen in this study and what will you be asked to do?

Our project is going to various countries around the world to talk to people with disabilities about their lives and their experiences.

If you agree to participate, you will be asked a series of questions about your life and your experiences. We will particularly want to know if your human rights have been violated and how they have been violated. In other words, we will want to know if there are unfair things that have happened to you which have stopped you from participating in society in the way that people without disabilities participate in society.

If you agree to participate, you will be interviewed by one or more people with disabilities who are members of a local organization run by people with disabilities. We call these people the monitors. We know that, in the past, people with disabilities have often been left out of research about people with disabilities. We think that it is only fair that people with disabilities play an active role in any research about them.

During the interview, the monitor(s) will take notes. If you give them permission to do so, they will also tape or digitally record the interview so that we can be sure to get all of the information you provide accurately.

Depending on the methods of communication that are used, the complete interview should take approximately 1 to 3 hours to complete.

After the interview, the monitor(s) will give all of their notes and the tape/digital recordings to the person in charge of the project who we call the Site Coordinator. The monitor(s) will not keep any copies and will not talk to anyone except for the Site Coordinator about what you said. The interview will be confidential.

The Site Coordinator will pass the notes and recordings of your interview to the researchers who will study them. Your name will not be on any of the information given to the researchers, they will not know whose information they are studying.

After looking at your information and the information from interviews with at least 50 other people with disabilities in your country, the researchers will write reports that will be given to organizations of people with disabilities, other groups working to improve the lives of people with disabilities, the media and governments. Your name will not be mentioned in the reports without your clear permission.

Are there possible negative things that might happen if you participate in the study?

There are no negative things that will happen to you by participating in this study. However, you may feel uncomfortable when you start thinking about some of the questions that you are asked. For example, you may remember some things that have happened to you that are not pleasant to think about. If that happens, you can take a break from the interview or, if you want, you can stop the interview completely.

If you want to continue to talk about these things, that's fine, too. If you feel upset about these things, you can ask the monitor(s) for the name of someone you can talk to about your feelings after the interview is over.

Are there good things that might happen if you participate in this study?

You may or may not receive any direct benefit from participation. You might find that it makes you feel better to talk about some of your experiences. Also, we hope that organizations of people with disabilities, the media and governments learn from the studies and reports that are made and take steps to improve the lives of people with disabilities in your country.

Can you decide if you want to participate in the study?

You are free to choose to participate or not to participate in the study and you may choose to stop participating at any time. Your participation is completely voluntary. Your decision not to participate in the study will not influence your ongoing relationship with any of the study sponsors, monitors or any other person or group associated with the project.

Can you stop participating if you don't want to continue participating?

If, at any time during the study, you want to stop participating, for any reason, just let the monitor(s) know and they will stop asking you questions. If you want to answer some questions, but not others, you can do that, too. It is entirely your decision.

If you decide not to participate in the study, or if you decide to stop participating in the study, we will not use your information for our research. Any notes or recordings made up to the point you decided to stop will be destroyed. No one will treat you any differently if you decide that you do not want to participate in the study.

Will your information be kept confidential?

The information you provide will be kept confidential within the limits of the law. Unless you specifically provide your consent, your name will not appear in any report or publication of the research. The notes and recordings of your interview will be safely stored in a place that is locked and will be destroyed at the end of the project.

Costs and Compensation

You may need some money to cover your transportation to the interview location and the cost of any disability-related supports or assistance that you will need in order to participate in the interview. If this is the case, please let the monitors know the details in advance and the Project Coordinator will make the necessary arrangements.

If you have questions about the study

If you have questions about the research in general or about your own role in the study, please feel free to contact:

[Insert Name & Contact Details of the Site Coordinator]

by regular mail:
by telephone:
by email:

OR

Dr. Marcia Rioux
Principal Applicant, Monitoring the Human Rights of People with Disabilities in Canada (DRPI-Canada)
Co-Director, Disability Rights Promotion International (DRPI)
Professor, School of Health Policy and Management, Disability Studies, Faculty of Health, York University

by regular mail: York University, 441 HNES Building, 4700 Keele Street, Toronto, ON, M3J 1P3, Canada
by telephone: +1-416-736-2100 extension 22112
by email: mrioux@yorku.ca

Free and Informed Consent Form

I have read and understood the preceding pages of this Information Sheet. The research procedures mentioned above have been explained to me and all of my questions have been answered to my satisfaction. I have been informed that I can withdraw from the study at any time without penalty and that, if I choose to do so, any data collected as a result of my participation will be destroyed. The potential discomforts that I might experience because I have participated in the study have been explained to me. I also understand the potential benefits of being a part of this study.

I know that I may ask now, or at any time in the future, any questions I have about the study. I have been assured that the records, transcripts, and tapes related to this study will be kept confidential to the limits of the law. I have also been assured that no information will be released or printed or made public that would disclose my personal identity unless I give permission for that to happen.

I hereby consent to participate in the study:
Printed Name of Participant:

Signature of Participant:

Date of Signature:

I hereby consent to having my interview recorded
Signature of Participant:
Date:

Signature of Principal Investigator:
Date:

Please Note: This research has been reviewed by the Human Participants in Research Committee, York University's Ethics Review Board, and conforms to the standards of the Canadian Tri-Council Research Ethics guidelines and the York Senate Policy on research ethics. If you have any questions about this process, or about your rights as a participant in the study, please contact:

Ms. Alison Collins-Mrakas
Manager, Research Ethics, York University
mail: 277 York Lanes, York University, Toronto, ON, M3J 1P3, Canada
telephone: +1-416-736-5914
email: acollins@yorku.ca

If you would like to contact the Human Participants in Research Committee, please send your correspondence care of Ms. Collins-Mrakas at the above regular mail or email address.

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