Mother and father with a baby with Down syndrome

Latest Fund for Excellence Awards: March 2019

The Human Development Institute (HDI) established the Fund for Excellence for the development of innovative programs, services or products to address the needs of individuals with developmental disabilities and their families, for which funding is not currently available. In the January, 2019 funding cycle, HDI awarded two Fund for Excellence projects:

Dr. Elaine Eisenbaum’s Music for All Inclusive Summer Music Camp, with Lindsey Mullis, Megan Jasperson, Dr. Chithra Adams, Dr. Olivia Swedberg Yinger, Austin Robinson, and Dr. Martina Vasil

Stephanie Meredith’s Prenatal and Postnatal Medical Outreach Modules to Improve the Genetic Diagnosis Experience for Families, with Dr. Harold Kleinert,  Julie Chien, and Angela Trepanier

“The Fund for Excellence gives HDI the ability to launch innovative and needed projects that are really collaborative in nature, as evidenced by our most recently funded round of applications. They foster partnerships across HDI, the University and beyond. These projects will yield important opportunities and resources to build inclusive communities,” said HDI’s director, Kathy Sheppard-Jones.

Dr. Eisenbaum’s summer music camp will develop, pilot, and evaluate an inclusive summer music camp for elementary school students with and without disabilities. The summer camp will also serve as a collaborative training opportunity for students in the HDI certificate programs, graduate music therapy students, and in-service music educators.

The music therapy faculty and HDI staff will work together to get focus group input, HDI universal design expertise, and to consult with music therapy experts in inclusion, to update existing curriculum for camp. Additionally, HDI will work with the music therapy faculty to integrate health messaging into the summer camp curriculum and into supplemental parent information. Although other summer music camps exist, to our knowledge, none offer music educators and music therapists the opportunity to collaborate and learn in a truly inclusive setting, and there is little research on outcomes of inclusive summer music camps.

Dr. Eisenbaum shares, “We are very excited for this opportunity to collaborate with the School of Music on UK’s first inclusive summer music camp. We anticipate that the evaluation data we collect this summer will help inform future camp curriculum and allow us to broaden our reach to serve more children and families in coming years.”

Ms. Meredith’s project will two develop prenatal and postnatal medical outreach learning modules for HDI’s new learning management system: one module for medical professionals and another module for parent advocacy groups.

The learning module for medical professionals  would make our current training for medical and genetics students more widely available with purposeful instructional design, and the President of the Association of Genetic Counseling Program Directors (AGCPD) has offered to help us share this resource. In addition, an online learning version of our current medical outreach training for parent advocacy groups will help us to share our training with even more parent advocacy groups. We currently support about 65 local Down syndrome organizations nationwide with resources and training to build relationships with local clinicians delivering prenatal or postnatal genetic test results, but we need a more streamlined way to train them.

The moment of a prenatal or postnatal diagnosis is sometimes called a flashbulb memory, a memory that parents remember with perfect clarity for decades, and this memory is often the first moment on a lifespan that can shape perceptions from the very beginning. Our goal is to make sure every parent feels supported and receives accurate, up-to-date, and balanced information in that defining moment. This training will help us empower clinicians and parent advocacy groups to make that moment and compassionate, supportive, and informed as possible. —Stephanie Meredith, Medical Outreach Director at HDI’s Lettercase: National Center for Prenatal and Postnatal Resources