Pregnant woman with toddler on a beach

Administration for Community Living funds Center for Dignity in Healthcare for People with Disabilities

The Administration for Community Living has awarded the University of Cincinnati Center for Excellence in Developmental Disabilities a $1.5 million grant to lead eight national partners, including the Human Development Institute (HDI) at the University of Kentucky, and other stakeholders in establishing a Center for Dignity in Healthcare for People with Disabilities (CDHPD). The CDHPD will develop and disseminate protocols to address and prevent healthcare discrimination that can impact Americans with disabilities across the lifespan.

ACL reports that “the Center will develop resources for medical professionals to address and prevent healthcare discrimination, including policies, protocols, and resources. They will also develop resources for reporting healthcare discrimination and advocacy in partnership with people with intellectual and developmental disabilities (I/DD) and their families.” The main areas of focus for the grant will be prenatal screening, organ transplants, mental health, ageing, and end-of-life issues for people with I/DD.

Continue reading

Six people in a group

The Intersection of Genetics and the Disability Rights Movement

HDI’s Medical Outreach Director, Stephanie Meredith, and colleagues, Dr. Kara Ayers Associate Director of the University of Cincinnati UCEDD; Dr. John Constantino, Director of the Washington University in St. Louis Intellectual and Developmental Disabilities Research Center, Dr. Igna Van den Veyver a leading Maternal Fetal Medicine Specialist from Baylor College of Medicine; Katie Stoll, Executive Director of the Genetic Support Foundation; and Dr. Marsha Michie, an anthropologist from Case Western Reserve University presented on the intersection of disability and genetics at the annual American Society of Human Genetics meeting in Houston, TX on Friday, October 18. This presentation was made possible by ASHG, in collaboration with the Association of University Centers and NICHD.
Approximately 300 medical professionals attended this session that discussed the value of technology, the need to remember the patients at the other end of tests, and the prioritization of our collective humanity. “Nothing About Us Without Us!”, was a core message of this presentation that identified tools and strategies to provide a forum for the voices of people with disabilities and their families, in conversations about genetics and medical practice. The meaningful dialogue focused on how to intentionally include the perspectives of people with genetic conditions (and their families) when creating guidelines and public policy–and to make that happen by acknowledging the painful history of stigmatization and abuse endured by people with disabilities throughout history and then building relationships with the medical community and putting humanity first. Continue reading

Parents with baby with Down syndrome

Fall Research Brief 2019

Adherence of cell-free DNA noninvasive prenatal screens to ACMG recommendations in providing patient education resources
Research Brief by Stephanie Meredith & Mark Leach

Cell-free DNA prenatal screens (also known as NIPS or NIPT) were released in the US by commercial labs eight years ago as screening tests for conditions such as Down syndrome, Trisomy 18, and Trisomy 13. When these screens were originally released in 2011, they were largely covered in the media as non-invasive prenatal diagnostic tests that could detect conditions with a simple blood draw. However, even though cell-free DNA noninvasive prenatal screens are more sensitive than traditional screening tests, there are still chances for false positives and, less often, false negatives. Therefore, they are considered screening tests and are not actually diagnostic (Mozersky, 2012). The introduction of this new technology and some of the confusion surrounding it prompted national medical and genetics societies to issue guidelines about the administration of these screens. Continue reading
Woman with brown hair smiling at the camera

HDI 50th Anniversary Spotlight on Stephanie Meredith

What I love most about HDI is the culture cultivated by Dr. Harold Kleinert and nourished by so many other great leaders here—to be kind and nurture partnerships while also taking a stand and sometimes taking risks to make sure we are addressing the most pressing needs for people with disabilities and their families. I will forever be grateful to Harold and HDI for taking a risk and being willing to support our prenatal project and give it a home because it was the right thing to do … even when we had almost no funding. That kind of vision and commitment to helping families is rare and wonderful in an organization as expansive as HDI.   —Stephanie Meredith, Information Services Director, KentuckyWorks Staff, and Program Director HDI National Center for Prenatal and Postnatal Resources

Continue reading

Megan McCormick, 30-years-old with Down syndrome; Clay Carroll, 22 years-old with Williams syndrome; and Andy Meredith, 19 years old with Down syndrome

Employment for Youth with Disabilities: Seeing a Brighter Future, HDI Seminar Recap

By Amanda Kelley Corbin

What are your hopes and dreams for your son or daughter’s future? It’s something every parent has pondered. And while the question is simple enough, the answers can be as complex and diverse as our children are. This is especially true when a child has a disability.

“Every child deserves to develop their talents and follow their dreams,” said Stella Beard, Assistant Director of the Kentucky Special Parent Involvement Network (KY-SPIN).

The goal of the Human Development Institute (HDI) Spring Seminar held on March 21, with nearly 100 attendees (online and in person) was to help parents develop their son’s or daughter’s dreams.

Stay tuned for the video to be uploaded in the next couple of weeks!

Continue reading