HDI's National Center for Prenatal and Postnatal Resources: A Critical Time for Essential Information (KY UCEDD)

February 6, 2017

Given today's sociopolitical climate, now, perhaps more than any other time since the American eugenics movement, it's essential that there be conversations about personal and collective unconsciousness, the nature of prejudice, and scapegoating pertaining to citizens with disabilities. Much is at stake, including decisions made about the rightful place in society for people with disabilities - and in the minds of some, up to and including if there is such a place at all. While we need multiple ways of amplifying the voices of people with disabilities and their allies, accurate information about prenatal testing and its implications represents one critical dimension.

As prenatal testing labs compete to add more genetic conditions to their tests, families, patient advocacy groups, and providers are often left overwhelmed and confused when the results indicate a positive diagnosis. Companies reap tremendous profits from testing while leaving others having limited funds and resources to pick up the pieces afterwards. Not surprisingly, families often describe the experience of receiving a diagnosis as negative and isolating. Without accurate, balanced, and up-to-date information, prospective parents do not have the knowledge to make the most basic decisions impacting the life course for themselves and their family, or a way to envision life in an inclusive society.

The National Center for Prenatal and Postnatal Resources at the University of Kentucky's Human Development Institute oversees three medically reviewed programs that complement each other in providing important resources and information especially developed for new and expectant parents and medical professionals learning about a diagnosis of Down syndrome and other genetic conditions such as Turner syndrome.

1. Brighter Tomorrows' Resources for Medical Professionals offers an interactive tutorial to provide physicians with current knowledge about Down syndrome, as well as the communication tools to adequately support families and prospective parents at the point of the initial diagnosis of Down syndrome in utero and after delivery. This tutorial also includes virtual family cases. Both full tutorial and refresher courses are available.
   
   Funding and support for Brighter Tomorrows is provided by the U.S. Centers for Disease Control and Prevention (CDC), National Center on Birth Defects and Developmental Disabilities (NCBDDD), through a cooperative agreement with the Association of University Centers on Disabilities (AUCD).
   
2. Lettercase offers a library of print or digital resources in multiple languages providing accurate, balanced, and up-to-date information for new and expectant parents learning about a diagnosis of Down syndrome and other genetic conditions. Supported by the Joseph P. Kennedy, Jr. Foundation, these resources are unique in that they've been reviewed by representatives of the national medical and patient advocacy organizations. Expectant parents and medical providers can request free printed copies, and anyone can view the digital versions. Multiple copies may also be ordered from the bookstore (https://lettercase.hdi.uky.edu).
   
   
3. Down Syndrome Pregnancy provides honest, compassionate, medically-reviewed, and informative support for those preparing for the birth of a baby with Down syndrome. Down Syndrome Pregnancy is supported by tax exempt donations through the University of Kentucky Office of Development.

What's Next? Resources are being translated into additional languages and new booklets are in the works about additional genetic conditions.

For additional information contact: Stephanie Meredith, 404-828-0290,