Family Employment Systems Interaction Study - Phase 1.3

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Consent Form
Welcome and What This Research Study is About
You have been asked to participate in a study for individuals with intellectual and developmental disabilities (IDD) and their family members about employment. The purpose of this study is to find out whether Build Your Plan, a tool available through The Arc's Center for Future Planning, is helpful to individuals with IDD and their families who are interested in competitive employment.  Build Your Plan has been designed to help people develop a vision of employment and move from that vision to an employment outcome.  The study will last for six months as you use the Build Your Plan tool as a guide to plan for employment.

You are being asked to participate because you:
  1. Are an adult family member of a person with Intellectual and Developmental Disabilities who is at least 18 years old;
  2. Have family member with Intellectual and Developmental Disabilities, between the ages of 14 and 24, who may be transitioning from school and is interested in seeking competitive employment; 
  3. Have never used Build Your Plan before; 
  4. Play an active role in securing or supporting your family members' employment if he or she is already employed; and/or
  5. Have the ability to access the internet and complete the steps within the Build Your Plan tool offered through The Arc's Center for Future Planning.
As a small token of appreciation for participating in this study, you will be enrolled in a chance to win a $100 gift card from at the conclusion of the study.  The winner will be selected randomly at the conclusion of the 12 week study duration.

Pre-Test Survey
Once you have signed this consent form agreeing to participate in this study, you will be asked to register to use Build Your Plan.  To begin your registration process, you will complete a survey online, on paper, or over the phone.  The survey takes between 15-20 minutes to complete.  The survey asks questions about the experiences you and your family member with IDD have had while looking for competitive employment, and your attitudes and beliefs about competitive employment.  Once you have completed the survey, you will be given further instructions on how to register for Build Your Plan through The Arc's Build Your Plan account.  Your survey responses and registration information will be kept confidential and linked to an ID number.  Once you have completed this survey and the registration process, you will have access to the Build Your Plan tool.  For the purposes of the study, you will be randomly assigned to one of two groups of participants using Build Your Plan.  You will be assigned to either Group A, which will not receive our engagement strategy or Group B, which will receive the engagement strategy.  

What are my rights regarding this study?
You have the right to ask questions about the study before you consent via web or sign this form, or at any time after you have agreed to participate.  You have the right to end your participation in this study at any time.

If you have any further questions about this project, please call John Kramer at 617-287-4369 or email him at You can also contact the Institutional Review Board (IRB) at the University of Massachusetts Boston (617-287-5374) or if you have questions or concerns. The Institutional Review Board makes sure that when people take part in a research project, like you are being asked to, they are not being harmed in any way.

Data Privacy: Risks and Assurance of Data Protection
As with anything you do on the internet, there are inherent potential risks of unintended access to your data by other individuals.  To help mitigate the chances of this happening, this project is implementing the following:
  1. Your registration information will be de-identified; that is, it will be assigned and ID number and unlinked from your name.  The ID numbers and linked data will be stored on a password-protected computer accessible only to members of the research team. 
Information About Your Registration
Your registration with Build Your Plan will remain active for the duration of the data collection phase of the study.  At the conclusion of the study, you will be given the option to keep your registration active for another six months.  If you decide to end your participation in the study, your registration will remain active for the duration of the study and you will have the option to maintain your registration for another six months, but your data will not be included.