The purpose of this toolkit is to present ways for you to better include individuals with intellectual and developmental disabilities (IDD) in research. It provides strategies to make the informed consent process go more smoothly for your participants with IDD. Individuals with IDD are often excluded from health-related research. Exclusion from research leads to reduced… Read more The Informed Consent Process for Adults with Intellectual and Developmental Disabilities
Category: Researchers
Why Take Part in Research
What is research and why is it important? Research is investigating a subject to discover new information, or to revise existing information. It allows us to better understand ourselves and the world around us. In the field of intellectual and developmental disabilities research, such inquiry can aid in understanding the role of genetics in development,… Read more Why Take Part in Research
How to Write a Social Story™ (for teachers)
Social Stories™ are effective methods to provide guidance and directions for responding to various types of social situations. The stories are used to describe social situations specific to individuals and circumstances while promoting self-awareness, self-calming, and self-management. Social Stories™ are not meant to change behavior; rather, they are meant to clarify social expectations. They may… Read more How to Write a Social Story™ (for teachers)
Conducting Family-Friendly Research
Communicating with families Use people-first language by referring to the person before referring to the disability or diagnosis; for example, “student with autism” instead of “autistic student.” Use family-supportive language to acknowledge the different forms that family constellations can take. Eliminate jargon by using familiar and understandable language; if you must use acronyms, be sure… Read more Conducting Family-Friendly Research
Home Visits
Home Visit Best Practices: Using the Elevate AIDET Principle Acknowledge all family members. Knock, smile, make eye contact, and be pleasant. Introduce yourself and your role. Duration. At the start, state how long the overall visit will take, and during the visit you may want to state the length of particular tasks. Explain all processes… Read more Home Visits
Confidentiality in Research
Confidentiality in Research at the Vanderbilt Kennedy Center (VKC) The people who make up the VKC interact with individuals and families through research, clinical services, information and referral, and community involvement activities. Throughout these many forms of interaction, sharing of personal and private information is inevitable. In recognition of the many disciplines within the VKC… Read more Confidentiality in Research