RTOI Webinar: Brighter Tomorrows: Supporting Families with Accurate Information About Down Syndrome

Tuesday, December 9, 2008
2:00PM EST
Location: Online

The overall goal of this project is to improve the capacity of practicing physicians and residents in pediatrics and obstetrics/gynecology to provide accurate, well-balanced information and supportive counseling to families receiving the news of a diagnosis of Down syndrome in their child, either at birth or in utero. This project that began at the request of parents of children with Down syndrome who felt that other parents and prospective parents could be helped if physicians knew how to provide a diagnosis of Down syndrome with up-to-date, balanced information delivered in an emotionally supportive fashion. Families recognized that, in the past, they had often been given this news with limited information, balance, and little sense of hopefulness for the future.

We will demonstrate the key features of both the Physician Tutorial and the 10 minute Physician Refresher Tool. We will briefly present the results of our effectiveness study of the Tutorial with 133 pediatric and OB/GYN residents across 16 programs nationally. Finally, we will describe the key elements of the Family Version of this project. The Family Version is a comprehensive website with sections including Commonly Asked Questions and Answers for New and Prospective Parents, Life Glimpses of Individuals with Down Syndrome and Their Families, and Resources for Families, in both English and Spanish.

Speakers

Harold Kleinert, PhD

Dr. Harold L. Kleinert is currently the Executive Director of the Human Development Institute - University Center for Excellence in Developmental Disabilities Education, Research, and Service at the University of Kentucky. He has directed a broad range of federally funded demonstration and research projects, especially in the area of education of children and youth with severe disabilities, including research focused on alternate assessment, peer tutoring, and service learning for students with developmental disabilities. His work in Kentucky led to the first fully inclusive educational assessment and accountability system in the nation.

Most recently, he has led projects designed to teach physicians, as well as medical, dental, nursing, and physician assistant students, how to provide high quality care to patients with developmental disabilities. His work with Brighter Tomorrows is designed to enable physicians to provide prenatal and newborn diagnoses of Down syndrome to patients with supportive, accurate, and up-to-date information. Brighter Tomorrows has also produced a Family Version (available in both English and Spanish) to support families at this critical juncture in their lives.

Carol A. Lunney, PhD

Carol A. Lunney earned her Ph.D. in Human Development from Vanderbilt University and is a Licensed Marriage and Family Therapist. She has a long-standing interest in medical communication relating to disabilities of all types. After many years teaching, counseling, and serving as an administrator at Centre College, she joined the Brighter Tomorrows project, first as a Research Assistant and more recently as Project Director for Brighter Tomorrows.

Discussant

Madeleine Will, Vice President of Public Policy
National Down Syndrome Society

Registration

Interested participants must register for this event.

Webinar Materials