VANDERBILT STUDY OPPORTUNITY: Strengths, Spiritiuality, and Well-Being Among Young People with Austism or Intellectual Disabilities

This is a letter from Vanderbilt University inviting people who meet these criteria to participate in their study.

Dear Parents and Guardians,

We invite you to take part in a research study focusing on the strengths, supports, spiritual expressions, and well-being of young people with intellectual disabilities or autism in our state. Our goal is to learn more about the things that help youth and young adults with disabilities flourish and live a good life. We are inviting hundreds of parents across Tennessee to share their views on a survey as part of this research project. We will gather what we learn into a helpful guide that we will make available for free to you, other families, faith communities, disability organizations, and service providers across our state.

***You can participate if you are the parent or guardian of a young person with autism or an intellectual disability who is between the ages of 13 and 21.

If you choose to participate in this research, we will provide you a written survey to complete at a time and location most convenient to you. We anticipate it will take less than one hour to finish the survey. You will receive a $20 gift card for participating. The survey includes questions on the following topics:

• Background information about your child
• Your child’s support needs and community involvement
• Your child’s strengths in areas such as kindness, sense of humor, and self-determination
• The ways in which your child expresses his or her spirituality or religious faith (if applicable)
• Your child’s overall well-being
• Your views on your own family’s quality of life
• Your own congregational involvement (if applicable)
• Your views on the supports faith communities could provide to families of children with disabilities and the inclusiveness of your own congregation (if applicable)

You can skip any of the questions you prefer not to answer. And you can also change your mind about participating after receiving and reading the survey.

As you can see, we are interested in learning more about the religious participation, faith, and spiritual expressions of young people with disabilities. Very little is known about this aspect of the lives of people with intellectual disabilities or autism. For some young people and their families, this may be an important part of their life; for others, it is much less—or not at all—important. We strongly encourage your participation in this study wherever your views fall on this topic.

Your participation is completely voluntary and you can change your mind at any time. All efforts, within reason, will be made to keep your personal information confidential, but total confidentiality cannot be guaranteed. To minimize any risk that the personal information you share could be linked back to you or your family, we will take immediate steps to protect the confidentiality of your responses. Your survey will be linked only to a unique number and any identifiable information you include will be removed. As we will not use names, it will be impossible to identify you or your child when we write or talk about this study. All data will be stored on password-protected computers and in the locked project offices of Dr. Carter.

As with all surveys, a high participation rate helps ensure our findings and recommendations really do reflect the views of all families and young people across our state.

We encourage your questions about this project at any time by contacting Erik Carter at (615) 875-3398 or erik.carter@vanderbilt.edu. For additional information about giving consent or your rights as participant in this study, please feel free to contact the Vanderbilt University Institutional Review Board Office at (615) 343-4138 or toll free at (866) 224-8273.

Thank you for considering this invitation!

Regards,

Erik Carter, Courtney Taylor, Thomas Boehm, & Naomi Annandale

Disabilities, Religion, and Spirituality Program

Vanderbilt Kennedy Center, Vanderbilt University

HOW CAN YOU PARTICIPATE IN THIS PROJECT?

If you are interested in participating in this project, http://tinyurl.com/7nohlwx ,send an e-mail to Erik Carter at erik.carter@vanderbilt.edu, call him at (615) 343-4138, or send the following information by mail:

Name

Street Address:

City:

State:

Zip Code:

Telephone:

E-mail:

You can mail this information to:

Erik Carter, Department of Special Education, PMB 228, 230 Appleton Place , Nashville, TN 37203-5721.