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Parent/Guardian Survey

Welcome!

We are so glad you are interested in our Family LifeCourse Group. This group is for parents or guardians of youth/young adults with intellectual and developmental disabilities (IDD). The purpose of this group is to utilize the Charting the LifeCourse: Daily Life and Employment Toolkit. LifeCourse tools are designed to support parents to develop a vision for their youth/young adult’s future.
The group will last for six months. Together we will use Charting the LifeCourse: Daily Life and Employment Toolkit as a guide to plan for employment.

You are being asked to participate because you:
  • are the parent or guardian of youth/young adult between the ages of 12 and 18 with IDD
  • actively use Facebook
  • wonder about the future for your youth/young adult including employment and daily living
  • are interested in learning how to take steps to make your vision a reality
What you can expect
First we will ask you to sign a consent form. Once you have signed this consent form, you will be asked to complete a brief survey. It asks questions about your expectations for the future, your attitudes and beliefs about inclusive options, and small steps that you may or may not be taking to reach future goals. Upon finishing the survey, you will receive instructions on how to join our private Facebook group!

As part of the Facebook group, you will receive an easy-to-digest portfolio of information delivered on a monthly basis from Charting the LifeCourse: Daily Life and Employment Toolkit, companion resources including worksheets, have opportunities to connect with other parents via monthly video chats and Facebook posts, and have regular access to experts in the LifeCourse tools and employment. All of these activities will occur over the next six months.  

First, let’s start with the consent form:

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 questions about this project, please call Jennifer Bose at 617-287-4353 or email her at jennifer.bose@umb.edu. You can also contact the Institutional Review Board at the University of Massachusetts Boston (617-287-5374 or human.subjects@umb.edu) if you have questions or concerns. The Institutional Review Board makes sure that people taking part in a research project, like you, are not being harmed in any way and are having their rights respected.

Data Privacy: Risks and Assurance of Data Protection
As with anything you do on the internet, there are some risks that outsiders could hack your account and access your data. To help prevent this, we’ve taken some steps to keep you and your data safe:
Your registration information will be de-identified. That means that it will be assigned an 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. 
The Facebook group you join will be private, and only people who have been invited will see anything you contribute. Private groups like this also cannot be found using Facebook's search function.
 
I HAVE READ THE CONSENT FORM AND/OR HAD IT VERBALLY EXPLAINED TO ME. MY QUESTIONS HAVE BEEN ANSWERED. MY SIGNATURE ON THIS FORM INDICATES THAT I CONSENT TO PARTICIPATE IN THIS RESEARCH STUDY.  *This question is required.