Dear Community Members with Ties to People with IDD;
I am Mary Ann Clute, MSW, LICSW, PhD. I am a social work educator, researcher and practitioner. I work with bereaved adults with IDD. “Intellectual disability is a disability characterized by significant limitations in both intellectual functioning and in adaptive behavior, which covers many everyday social and practical skills. This disability originates before the age of 18”(AAIDD, 2013). Adults are individuals over 18 years of age or at the age for your state to consider an individual as an adult. I am providing links to two surveys about adults with IDD, death understanding, preparation, and grief preparation and experiences with death/grief. Both surveys ask general information about death and grief and then, if relevant, the participants are asked about specific experiences. All guardians of adults with IDD and all self-advocates with IDD are welcome to participate. Agencies or advocates are welcome to assist participants in completing the survey. If assisting, please allow the participant to decline doing the survey, or decline answering any specific questions. I plan to use the information to help educate practitioners, families, caregivers and adults with IDD in death education, grief support and intervention. The surveys I have designed are completely anonymous. Answer selections are not tied to name, e-mail address or identity. This surveys have been approved by Eastern Washington University’s Institutional Review Board for Human Subjects Research The guardian survey link: For guardians of adults with IDD https://ewsusw.co1.qualtrics.com/SE/?SID=SV_3K1BjDNE3QjqN3D
I also developed a survey for self -advocates with IDD (those who function without help of a guardian) about death and grief. https://ewsusw.co1.qualtrics.com/SE/?SID=SV_4N7536TIA7yHwk5 . These surveys are active until May 30, 2015. Please feel free to share the links with your constituents, agencies and networks throughout the U.S.A. I very much appreciate your help.
Opportunity 2: Personality and Environmental Effects on Resilience for Adolescents with a Chronically Ill/Disabled Sibling
We are looking at traits of adolescents who have a chronically ill/disabled sibling. To qualify you must be between the ages of 12-18 and have only one sibling. The sibling of the participant needs to have a chronic illness/disability that is physical (not looking at mental illnesses for this survey).
The participant does not need to have an illness/disability, although this does not exclude them. The survey is online, and should take approximately 10-20 minutes. All participants will have a chance to win one of ten $10 Amazon gift cards that will be raffled when our survey is completed.
Every single response goes a long and we appreciate all the help! Ifyou have any questions, feel free to contact us at JNacht2@pride .hofstra.edu or LWater4@pride .hofstra.edu. Thank you!