Informed Consent

Thank you for participating in our parent advocacy training for legislative change! 
Dear Prospective Participant,

Researchers in the department of Special Education at the University of Illinois, Urbana-Champaign and Boston University are conducting a research study about the effect of a civic engagement training for parents of children with disabilities. During this study, you will be involved in the following procedures:

(a) Survey: First, we would like for you to provide some background information about you, your child, your family and your experiences with special education and legislative advocacy. This questionnaire will take about 20-25 minutes to complete. We will ask you to complete this survey three times. You can complete the survey via a web-based survey or via hard copy.

(b) A focus group interview: Next, you will participate in a focus group interview for up to 60 minutes. The focus group interview will occur at the beginning of the civic engagement training. The focus groups will be audio-recorded. After you complete the focus group, we will send you a one-page summary of the focus group and ask you to review it for accuracy. This will take less than 10 minutes.

(c) Videotaped Testimonial: At the end of the civic engagement training, we will ask you to complete a videotaped testimonial. During the testimonial, you would be taped for three minutes about what you wanted changed in special education policy. We will send you your videotaped testimonial in case you want to use it in your legislative advocacy efforts. Also, we will post your testimonial on a University affiliated website so others can learn parent perspectives about special education policy.

Joining this study is completely voluntary. If you participate in the study, you will receive $20 in compensation. Specifically, you will receive a $10 giftcard at the end of the civic engagement training; after you complete the follow-up component of reviewing the focus group summary (which should take 10 minutes), you will receive another $10 giftcard.

We will use all reasonable efforts to keep your personal information confidential, but we cannot guarantee absolute confidentiality. When this research is discussed or published, no one will know that you were in the study. But, when required by law or university policy, identifying information may be seen or copied by: the Institutional Review Board that approves research studies; the Office for Protection of Research Subjects and other university departments that oversee human subjects research; and University state auditors responsible for the oversight of research. However, notes, tapes, and transcriptions collected during this study will be kept in a secure location for two years and then destroyed. Your name and any other identifying information will not appear in the journal publications, conferences, or any related dissemination materials.

The benefits to this study are that you are contributing to the research literature about the process of legislative advocacy. There are minimal risks to you as a participant in this study. It means that there are not anticipated to be any risks beyond those that exist in daily life. It is possible that participants may feel uncomfortable during the interview with an unknown researcher and/or being asked questions related to their personal stories and feelings about them. Every effort will be made to ensure that participants are comfortable and at ease if it is necessary during interviews. You may refuse to participate or may discontinue participation at any time during the project without penalty.If you have questions or concerns about this study, please contact Meghan Burke (217-300-1226; If you feel you have not been treated according to the descriptions in this form, or if you have any questions about your rights as a research subject, including questions, concerns, complaints, or to offer input, you may call the Office for the Protection of Research Subjects (OPRS) at 217-333-2670 or e-mail OPRS at 

You will be provided with a copy of this consent form for your records. Thank you for considering participating in this important study. 

By checking below, I certify that I am 18 years of age or older and I have read and understand the above consent form and voluntarily agree to participate in this audio-recorded interview and  video-taped testimonial.

Question Title

* 1. Check if you agree to participate in the study

Question Title

* 2. Check if you agree to have your interview recorded