Protocol Title: Project Civic LeAdS: Enhancing Civic Engagement of Culturally and Linguistically Diverse Families and Students with Disabilities: Legislative Advocacy in Special Education
Principal Investigator: Zach Rossetti
Description of Study Population: Parents/primary caregivers of school-aged students with disabilities
Version Date: February 11, 2021
The following information is provided to inform you about the research project and your participation in it. Please read this form carefully.
The purpose of this research study is to examine the effectiveness of a civic engagement training for parents of children with disabilities. Participants will be in this research study for 6 hours (during the civic engagement training). The first half of the civic engagement training includes a review of IDEA principles with emphasis on what parents want changed in the law, and the second half focuses on legislative advocacy. During this time, participants will make one or two visits to the training site (depending on whether the training occurs on the same day or two days).
Please read this form carefully. The purpose of this form is to provide you with important information about taking part in a research study. If you have any questions about the research or any portion of this form, please ask us. Taking part in this research study is up to you. If you decide to take part in this research study we will ask you to sign this form. We will give you a copy of the signed form.
The person in charge of this study is Zach Rossetti. Dr. Rossetti can be reached at 617-353-619 or zsr@bu.edu. We will refer to this person as the “researcher” throughout this form.
What should I know about a research study?Participation in research is voluntary, which means that it is something for which you volunteer. It is your choice to participate in the study, or not to participate. If you choose to participate now, you may change your mind and stop participating later. If you decide not to participate, that decision will not result in any penalty or loss of benefits to which you are otherwise entitled.
Why is this study being done?The purpose of this study is to examine the effect of a civic engagement training for parents of children with disabilities. We are asking you to take part in this study because you are the parent/primary caregiver of a student with a disability receiving special education services. About 180 parents of children with disabilities across six states will take part in this research study.
Who is Funding the Study?The study is funded by the Spencer Foundation (https://www.spencer.org).
How long will I take part in this research study?
We expect that you will be in this research study for 6 hours (during the civic engagement training). During this time, participants will make one or two visits to the training site, which is your local Parent Training and Information Center (or an alternate site where they hold their trainings).
What will happen if I take part in this research study?If you agree to take part in this study, we will ask you to sign the consent form before we conduct any study 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. A focus group is a small group of people who take part in a discussion about a selected topic. The focus group will be led by a member of the research staff. The focus group leader will ask the group members about their opinion of topic. The researchers will ask you and the other people in the group to use only first names during the group session. They will also ask you not to tell anyone outside the group what any particular person said in the group. However, the researchers cannot guarantee that everyone will keep the discussions private. The focus group interview will occur at the beginning of the civic engagement training. These 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.
We will assign you by chance (like a coin toss) to one of two study groups. Both groups will complete all study activities. One group will attend the civic engagement training before the other group. You and the researcher cannot choose your study group. You will have an equal chance of being assigned to either study group.
What are the risks of taking part in this research study?There are minimal risks to you as a participant in this study. It means 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. You may feel emotional or upset when answering some of the questions. Tell the interviewer at any time if you want to take a break or stop the interview. Every effort will be made to ensure that participants are comfortable and at ease if it is necessary during interviews. You may be uncomfortable with some of the questions and topics we will ask about. You do not have to answer any questions that make you feel uncomfortable. You may refuse to participate or may discontinue participation at any time during the project without penalty.
The main risk of allowing us to use and store your information for research is a potential loss of privacy. We will protect your privacy by labeling your information with a code and keeping the key to the code in a password-protected computer.
If, during your participation in this study, we have reasonable cause to believe that child/elder abuse is occurring, he/she must report this to authorities as required by law. The researcher will make every reasonable effort to protect the confidentiality of your research information. However, it might be possible that a civil or criminal court might demand the release of identifiable research information.
Reporting Suicidal Risk: If, during your participation of this study, we have reason to believe that you are at risk for being suicidal or otherwise harming yourself, we are required to take the necessary actions. This may include notifying your doctor, your therapist, or other individuals. If this were to occur, we would not be able to assure confidentiality.
You will be informed of any significant new findings developed during the course of this research which may affect your willingness to continue participation.
Are there any benefits from being in this research study?You may or may not benefit from taking part in this study. Possible benefits may include contributing to the research literature about the process of legislative advocacy. Others may benefit in the future from the information that is learned in this study.
What alternatives are available? You may choose not to take part in this research study.
Study Participation and Early WithdrawalTaking part in this study is your choice. You are free not to take part or to withdraw at any time for any reason. No matter what you decide, there will be no penalty or loss of benefit to which you are entitled. If you decide to withdraw from this study, the information that you have already provided will be kept confidential.
Audio/Video RecordingWe would like to audio/video record you during this study. If we are in-person, the focus groups will be audio recorded so we can transcribe them. The testimonials will be video recorded, and we will give you the edited videos after the training. We will display the videos on the project website. If we are not in-person both will be video recorded via Zoom.
If you are audio recorded, it will not be possible to identify you. If you are video recorded, it will be possible to identify you. We will store both of these recordings on our computer and only approved study staff will have access to the recordings. We will label these recordings with a code instead of your name. The key to the code connects your name to your recording. The researcher will keep the key to the code in a password-protected computer. Audio recordings of focus groups will be destroyed after we complete the written transcriptions.
Do you agree to allow us to audio/video record you during this study?
* must provide value
Yes
No
Participant's Initials:
* must provide value
How Will You Keep My Study Records Confidential?
We will keep the records of this study confidential by using a unique study ID for each participant. All data will be stored for three years in the locked office of the PI. The hard copy data will be stored in a locked cabinet in the locked office of the PI. Thus, only the PI and approved research staff will have access to the data. All electronic data will be stored on the PI’s computer. Only the PI and approved research staff will have access to electronic data. After the data have been linked, we will eliminate the real-name identifier.
We will make every effort to keep your records confidential. However, there are times when federal or state law requires the disclosure of your records.
The following people or groups may review your study records for purposes such as quality control or safety:
• The Researcher and any member of their research team • The Institutional Review Board at Boston University. The Institutional Review Board is a group of people who review human research studies for safety and protection of people who take part in the studies. • The sponsor or funding agency for this study • Federal and state agencies that oversee or review research • Central University Offices
The study data will be stored in the researcher’s locked office and password-protected computer.
Focus groups and social validity interviews will be audio recorded. The audio-recordings are for transcription purposes only (not for dissemination). The audio-recordings will be destroyed after the transcription is made.
Survey data will be collected electronically through RedCap. If paper surveys are completed, a member of the research team will fill out a corresponding electronic survey and destroy the paper survey. Survey data will be kept in an electronic data base using SPSS.
Testimonials will include both written and video data. Paper copies of testimonials will be scanned or typed into electronic form. The originals will be destroyed.
The results of this research study may be published or used for teaching. We will not include identifiable information on data that are used for these purposes.
Use of Your Study Information
Private information collected from you during this study will NOT be used for future research studies or shared with other researchers for future research, even if the information identifying you are removed from the private information.
Will I get paid for taking part in this research study?
If you participate in the study, you will receive $50 in compensation. Specifically, you will receive a $25 gift card 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 $25 gift card.
There are no costs to you for taking part in this research study.
If you are injured as a result of taking part in this research study, we will assist you in getting medical treatment. However, your insurance company will be responsible for the cost. Boston University does not provide any other form of compensation for injury.
Please call us with any concerns or questions about the research, or any research-related problems: • Zach Rossetti- 617-353-6419, zsr@bu.edu • Meghan Burke- meghanbm@illinois.edu • Monday-Friday, 9:00am-5:00pm
If you have questions about your rights as a research participant, or if you have any complaints or concerns and want to speak with someone independent of the research team, you may contact the Boston University Charles River Campus IRB at 617-358-6115. The IRB Office webpage has information where you can learn more about being a participant in research, and you can also complete a Participant Feedback Survey.
Statement of Consent
Name of Study Participant
* must provide value
Email address
* must provide value
Phone number
* must provide value
Who are you as the respondent?
Mother
Father
Legal Guardian
Other
In what year were you born?
1940 1941 1942 1943 1944 1945 1946 1947 1948 1949 1950 1951 1952 1953 1954 1955 1956 1957 1958 1959 1960 1961 1962 1963 1964 1965 1966 1967 1968 1969 1970 1971 1972 1973 1974 1975 1976 1977 1978 1979 1980 1981 1982 1983 1984 1985 1986 1987 1988 1989 1990 1991 1992 1993 1994 1995 1996 1997 1998 1999 2000 2001 2002 2003 2004 2005
What is your current marital status?
Married
Not Married
What is your highest level of education?
Some High School
High School Degree
Some College
College degree
Graduate degree
What is the overall annual income within your household?
Less than $15,000
$15-$29, 000
$30-$49, 000
$50-$69, 000
$70-$99, 000
Over $100,000
What race/ethnicity are you? Check all that apply.
If you marked other, please explain.
Which area do you want to complete the training in?
Washington DC Illinois New Mexico Louisiana Maine South Carolina
How many children with disabilities do you have?
1 2 3 4 5 6 7 8 9 10
What type of disabilit(ies) do they have?
1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26
What is your child's gender?
Male
Female
Non-binary
Prefer to self-describe
What kind of school does your child attend (public, private, homeschool, other)?
Public
Private
Homeschool
Other
If you marked other, please explain.
Which disability does your child have? Mark one or more.
If you marked other, please explain.
How much time does your child spend in the regular education classroom?
0-20%
21-40%
41-60%
61-80%
81-100%
A total score of independent skills
View equation Average score of independent skills
View equation
FREQUENCY: How often does this behavior usually occur? (check one)
Never
Less than once a month
One to 3 times a month
One to 6 times a week
One to 10 times a day
One or more times an hour
SEVERITY: How serious is the problem usually caused by this behavior? (check one)
Not serious; not a problem
Slightly serious; a mild problem
Moderately serious; a moderate problem
Very serious; a severe problem
Extremely serious; a critical problem
FREQUENCY: How often does this behavior usually occur? (check one)
Never
Less than once a month
One to 3 times a month
One to 6 times a week
One to 10 times a day
One or more times an hour
SEVERITY: How serious is the problem usually caused by this behavior? (check one)
Not serious; not a problem
Slightly serious; a mild problem
Moderately serious; a moderate problem
Very serious; a severe problem
Extremely serious; a critical problem
FREQUENCY: How often does this behavior usually occur? (check one)
Never
Less than once a month
One to 3 times a month
One to 6 times a week
One to 10 times a day
One or more times an hour
SEVERITY: How serious is the problem usually caused by this behavior? (check one)
Not serious; not a problem
Slightly serious; a mild problem
Moderately serious; a moderate problem
Very serious; a severe problem
Extremely serious; a critical problem
FREQUENCY: How often does this behavior usually occur? (check one)
Never
Less than once a month
One to 3 times a month
One to 6 times a week
One to 10 times a day
One or more times an hour
SEVERITY: How serious is the problem usually caused by this behavior? (check one)
Not serious; not a problem
Slightly serious; a mild problem
Moderately serious; a moderate problem
Very serious; a severe problem
Extremely serious; a critical problem
Does your child have any unusual behaviors that they may do over and over? For example, pacing, rocking, twirling fingers, sucking hands or objects, twitching (nervous tics), talking to self, grinding teeth, eating dirt or other objects, eating too much or too little, staring at an object or into space, or making odd faces or noises?
FREQUENCY: How often does this behavior usually occur? (check one)
Never
Less than once a month
One to 3 times a month
One to 6 times a week
One to 10 times a day
One or more times an hour
SEVERITY: How serious is the problem usually caused by this behavior? (check one)
Not serious; not a problem
Slightly serious; a mild problem
Moderately serious; a moderate problem
Very serious; a severe problem
Extremely serious; a critical problem
Does your child behave in ways that are offensive to others? For example, talking too loudly, swearing or using vulgar language, lying, standing too close or touching others too much, threatening, talking nonsense, spitting at others, picking nose, belching, expelling gas, touching genitals, or urinating in inappropriate places?
FREQUENCY: How often does this behavior usually occur? (check one)
Never
Less than once a month
One to 3 times a month
One to 6 times a week
One to 10 times a day
One or more times an hour
SEVERITY: How serious is the problem usually caused by this behavior? (check one)
Not serious; not a problem
Slightly serious; a mild problem
Moderately serious; a moderate problem
Very serious; a severe problem
Extremely serious; a critical problem
FREQUENCY: How often does this behavior usually occur? (check one)
Never
Less than once a month
One to 3 times a month
One to 6 times a week
One to 10 times a day
One or more times an hour
SEVERITY: How serious is the problem usually caused by this behavior? (check one)
Not serious; not a problem
Slightly serious; a mild problem
Moderately serious; a moderate problem
Very serious; a severe problem
Extremely serious; a critical problem
FREQUENCY: How often does this behavior usually occur? (check one)
Never
Less than once a month
One to 3 times a month
One to 6 times a week
One to 10 times a day
One or more times an hour
SEVERITY: How serious is the problem usually caused by this behavior? (check one)
Not serious; not a problem
Slightly serious; a mild problem
Moderately serious; a moderate problem
Very serious; a severe problem
Extremely serious; a critical problem
A total score of sense of empowerment
View equation The average score of the sense of empowerment
View equation At what level does the federal government currently fund IDEA?
5%
12%
40%
75%
Question 1- correct or incorrect?
View equation At the federal level, what are all of your dispute resolution options?
Due process and filing a complaint
Mediation only
Due process and mediation
Filing a complaint, due process, and mediation
Question 2- correct or incorrect?
View equation How often is IDEA reauthorized?
4 years
5 years
10 years
Not a specified number of years
Question 3- correct or incorrect?
View equation At the federal level, what age range does IDEA cover?
0-22 years old
3-14 years old
3-22 years old
3-26 years old
Question 4- correct or incorrect?
View equation What is the school's obligation to do with an evaluation at the private expense?
Accept it
Consider it
Reject it
Agree with part of it
Question 5- correct or incorrect?
View equation How long can students be suspended from school without receiving services?
0 days
5 days
10 days
No limit
Question 6- correct or incorrect?
View equation At the federal level, at what age does a transition plan need to be in place?
14 years old
16 years old
18 years old
22 years old
Question 7- correct or incorrect?
View equation Which option does not allow a school attorney to be present unless there is a parent attorney?
Resolution Meeting
Mediation
IEP meeting
Due process
Question 8- correct or incorrect?
View equation Which of the following terms are not in the law?
Mainstream
Inclusion
Least Restrictive Environment
Appropriate
Question 9- correct or incorrect?
View equation What kind of assessment precedes a behavioral intervention plan?
Functional Behavior Assessment
Evaluation
Reading Assessment
Teacher data
Question 10- correct or incorrect?
View equation 51. Have you visited a legislator (in-person visits only)?
Yes
No
a. If yes, how many visits have you made?
How many different legislators have you visited?
52. Have you shared a video of your concerns for the next IDEA reauthorization with anyone?
Yes
No
a. If yes, who have you shared it with?
b. How many people have you shared it with?
c. How have you shared it (e.g., facebook?)?
53. Have you e-mailed a legislator?
Yes
No
a. If yes, how many e-mails have you sent?
How many different legislators have you e-mailed?
54. Have you spoken to a support group or another group of individuals about special education?
Yes
No
a. If yes, who? How many people were in the group?
55. Have you written to the newspaper (or an alternate form of media including Facebook, twitter, etc.) about the IDEA reauthorization or special education?
Yes
No
a. If yes, how many forms of media have you used?
56. Have you told another parent about the IDEA reauthorization?
Yes
No
a. If yes, how many parents have you told?
57. Have you engaged in any other form of civic engagement about special education?
Yes
No
a. If yes, what kind of civic engagement and how many times?
58. Have you called your legislator about special education?
Yes
No
a. If yes, how many times?
62. Do you belong to or donate money to any groups or associations, either locally or nationally such as charities, labor unions, professional associations, political or social groups, sports or youth groups, and so forth?
Yes
No
63. Are you an active member of this group or any of these groups, (e.g. charities, labor unions, professional associations, political or social groups, sports or youth groups) a member but not active, or have you given money only? Mark all that apply.
64. Have you personally walked, ran, or bicycled for a charitable cause - this is separate from sponsoring or giving money to this type of event?
Yes, Have done it within last 12 months
Yes, But not within last 12 months
No, Never
65. Besides donating money, have you ever done anything else to help raise money for a charitable cause
Yes, Have done it within last 12 months
Yes, But not within last 12 months
No, Never
66. Many people are not registered to vote because they are too busy or move around often. Are you currently registered in your election district, or not?
Yes, Definitely
I think so
No
67. We know that most people don't vote in all elections. Do you vote in both national and local elections?
Yes, Always
Usually
No
68. Have you volunteered for a political organization or candidate running for office?
Yes, Within the last 12 months
Yes, But not within the last 12 months
No, Never
69. When there is an election taking place, do you try to convince people to vote for or against one of the parties or candidates, or not?
Yes, Always
Yes, Usually
No
70. Do you wear a campaign button, put a sticker on your car, or place a sign in front of your house?
Yes, Always
Yes, Usually
No
71. Have you given money to a candidate, political party, or organization that supported candidates?
Yes, Within the last 12 months
Yes, But not within the last 12 months
No, Never
A total score on the motivation scale
View equation An average score on the motivation scale
View equation
A total score of disability advocacy
View equation An average score of disability advocacy
View equation What personal qualities do you need to conduct civic engagement (e.g., legislative advocacy)?
Why do you want to conduct civic engagement (e.g., legislative advocacy)?
For the training, do you need accommodations?
* must provide value
Yes
No
What types of accommodations do you need?
Submit
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