Family Advocacy and Support Training (FAST)
A Project of PACER Center funded by the Administration on Developmental Disabilities as a Project of National Significance
National Family Support Survey
Consent Information
You are invited to be in a national research study of supports for families of youth with disabilities. You were selected as a possible participant because you are a parent or primary caregiver of a young person with disabilities between 12 and 22 years old. Please read this form and ask any questions you have before agreeing to be in the study.
The Family Advocacy and Support Training (FAST) Project is funded by the Administration on Developmental Disabilities (ADD) as a Project of National Significance (Grant number 90DN0269). FAST is a project of PACER Center in Minnesota in collaboration with Parent Centers throughout the United States and Territories and with the help of the University of Minnesota.
This survey is being conducted by: Sheryl A. Larson, Ph.D., and K. Charlie Lakin, Ph.D., University of Minnesota, Research and Training Center on Community Living. The FAST Project is coordinated by Shauna McDonald and Paula Goldberg, Executive Director, PACER Center.
Background Information
The purpose of this study is to learn about the information and supports young adults with disabilities and their families need to prepare for moving into adulthood.
Procedures:
If you agree to be in this study, we will ask you to complete the National Family Support Survey. You can complete and submit the survey on-line or you can provide your answers on paper and return it to Sheryl Larson, ICI @ University of Minnesota, 214 Pattee Hall, 150 Pillsbury Drive SE, Minneapolis, MN 55455. Larso072@umn.edu.
Risks and Benefits of being in the Study
Risks:
We do not anticipate there being any risks involved in completing this confidential survey.
Benefits:
You will receive no direct benefit from completing the survey. Your answers to the questions will help the Administration on Developmental Disabilities, parent centers, and researchers to understand the information and supports families need to plan for the transition of youth with disabilities into adult role. You may find that the questions cause you to think about topics you haven’t considered before, or to seek more information from your local Parent Center.
Compensation:
No compensation will be provided for completing the survey.
Confidentiality:
Your answers to the survey questions will be kept private. Reports describing the results of the survey will not identify specific individuals. Research records will be stored securely and only researchers will have access to the records.
Voluntary Nature of the Study:
Participation in this study is voluntary. Your decision whether or not to participate will not affect your current or future relations with the United States Department of Health and Human Services, the University of Minnesota, PACER Center or your local Parent Center. If you do participate, you can leave questions blank or decide not to submit your answers without affecting those relationships.
Contacts and Questions:
The researchers conducting this study are: Sheryl Larson and Charlie Lakin. You may ask any questions you have now. If you have questions later, please contact Sherri Larson at the Research and Training Center on Community Living, 612-624-6024, larso072@umn.edu.
If you have any questions or concerns regarding this study and would like to talk to someone other than the researcher(s), you are encouraged to contact the Research Subjects’ Advocate Line, D528 Mayo, 420 Delaware St. Southeast, Minneapolis, Minnesota 55455; (612) 625-1650.
You may keep this form for your records if you wish.
When you submit your responses to the survey you are saying you choose to participate in this study.
For more information about the Family Advocacy and Support Training Project, Contact Shauna McDonald at
PACER Center, Inc.
8161 Normandale Boulevard
Minneapolis, MN 55437-1044
952-838-9000 voice 952-838-0190 TTY
888-248-0822
Fax: 952-838-0199
pacer@pacer.org
www.pacer.org
If you would like to participate in this study, click the button below to begin the survey.