Over the past two months, the Lettercase National Center for Prenatal and Postnatal Resources has provided training, support and resources to 11 local Down syndrome organizations across the U.S. to assist them in strengthening relationships with local medical providers and improving the diagnosis experience for expectant parents.
The Green River Area Down Syndrome Association is one of the organizations.
Each organization has received more than six hours of training, free nationally recommended materials for expectant parents and providers, and ongoing support and technical assistance.
GRADSA also received a scholarship funded through a cooperative grant from the Administration for Community Living as part of the Center for Dignity in Healthcare for People with Disabilities.
Each scholarship recipient receives training via learning modules, webinars and support calls and comprehensive ongoing support including customized medical outreach plans, ongoing webinars and connections with medical mentors in their local area.
In addition, each organization received free nationally-recommended resources supported by the Joseph P. Kennedy, Jr. Foundation.
Scholarship recipient Christie Ashby, the Medical Outreach Coordinator at the Green River Area Down Syndrome Association in Kentucky, said GRADSA was honored to be a recipient for the prenatal medical outreach grant.
“We are excited about having access to the training and resources for the next two-and-a-half years,” she said. “The direct guidance is very helpful in developing a strong medical outreach plan. We look forward to building our relationship with medical providers by using the resources and training provided from Lettercase. We also look forward to providing those materials to new and expectant parents with the goal of making a Down syndrome diagnosis a positive experience.”
Stephanie Meredith, Director of the Lettercase National Center for Prenatal and Postnatal Resources, said over the past 10 years they have seen tremendous growth in the number of high-quality, nationally recommended resources about Down syndrome and other genetic conditions, as well as organizations to support new and expectant parents online and in-person.
“We have also seen significant growth in prenatal testing technologies,” he said. “However, a recent study from the University of South Carolina showed that about half of women said they did not receive the support and information they needed when a diagnosis of Down syndrome was suspected.”
Meredith said one key challenge seems to be that many clinicians and expectant parents aren’t aware of these valuable resources available to them at the moment of diagnosis.
“Expectant parents also continue to indicate that they want to know about both the medical issues and also the life outcomes and supports and services available to people with Down syndrome and their families,” she said. “The goal with this initiative is to strengthen relationships between the medical and advocacy community so that expectant parents receive the full spectrum of support and information they need following a diagnosis.”