Woman with brown hair smiling at the camera

Medical outreach in action!

Stephanie Meredith is going to be busy soon. 

Meredith, HDI’s Medical Outreach Director, has been invited to be a part of several medical conferences in the US and Canada starting this month and continuing until April. 

In February, she travelled to and presented at the Down Syndrome Affiliates in Action Conference in Dallas, Texas, and she hopes to follow that with presentations at USC Columbia genetic counseling student cohort, the American College of Medical Genetics and Genomics in Toronto, the sixth congress on the ethical, legal, and social implications of genomic research in New York City and the International Society for Prenatal Diagnosis in Boston.

She will also be representing HDI at the American Academy of Developmental Medicine and Dentistry’s One Voice Conference in Chicago, and the Disability Policy Seminar in Washington D.C. 

With so many conferences in so many places, Meredith has a lot of opportunities ahead of her, and she’s excited to take advantage. 

Meredith is experienced in delivering the types of talks she’ll be giving in these conferences and has a different approach for each audience. 

“When I talk to the advocacy organizations, I’m teaching or training them on how to be methodical and diplomatic,” she said. “Are you actually capturing those families with Down syndrome in your area who have babies being born? How do we figure out whether you are or not? And where are your gaps? And I’m going to be talking about how to support families who have Black and Hispanic children with Down syndrome. We recently completed a research study that found that there was some implicit and explicit bias in those conversations.”

Stephanie will also be working on how to help medical professionals build up their best practices. 

“I talk about some of the ways in which bias can be present in conversations and what they can do to make those diagnosis conversations more supportive to families and also more equitable in how they talk about disabilities,” she said. “They’ll say, ‘Oh, I’m so sorry, your baby has this condition,’…we don’t need to frame it as bad news. It is likely unexpected news, but it’s not inherently bad news.”

She’s particularly excited to present to the American College of Medical Genetics and Genomics, where she will share the stage with some experts on disability and ethics, many of whom have disabilities themselves. 

“I’m even more excited that my colleagues are sharing their perspectives too,” she said. “I think that it’s really important, especially for geneticists and with the history of some of the discrimination against people with disabilities in genomics.”

Not only does Meredith have the opportunity to share her knowledge and help lift up others with lived experience, she also has the chance to experience a lot of different places in the process. It’s a great chance to travel and learn about new places and people. While she’s excited to see new places and try some new foods, she is also knows that traveling gives her the chance to learn more about the people she needs to work with. 

“When you’re doing community engaged work, it helps to have those personal relationships with people,” she said. “Sitting down and breaking bread with people and being in the place where they live helps you to have closer connections and a greater appreciation for what they’re dealing with.”

latino boy

Human Development Institute’s Stephanie Meredith receives PCORI Engagement Award to address health disparities as related to Down syndrome diagnoses in Black and Hispanic families

The Lettercase National Center for Prenatal and Postnatal Resources at the University of Kentucky’s Human Development Institute (HDI) has been awarded a prestigious Eugene Washington PCORI Engagement Award by the Patient-Centered Outreach Research Institute (PCORI). Beginning in July 2022, the $249,582 award will be distributed over the next two years to convene meetings to determine and share recommendations for disseminating research to new and expectant Black and Hispanic parents of children with Down syndrome.

The first year of the grant will be carried out in three distinct phases. In the first phase, HDI’s Medical Outreach Director Stephanie Meredith and her team will work with 10 Black parents and 10 Hispanic parents of children with Down syndrome, along with leaders from six Down syndrome advocacy organizations across the US. This phase, according to Meredith, is about giving each family the chance to share recommendations for disseminating research to Black and Hispanic new and expectant parents. Meredith’s team will ask questions to better understand recommendations for sharing research, as well as barriers to resources and information and what could be done to address these gaps.

“Everybody in the process is being paid equitably for their contributions,” Meredith said. “A lot of times families get brought in, and they are asked for their expertise but only get minimal reimbursement. No, we are treating them like the experts that they are. [These parents are] getting paid the same rate as the professionals for 20 hours of work.”

Meredith is currently pursuing her doctoral degree in Public Health at Georgia State University. In earlier research, she received 243 responses to a research study on the Down syndrome diagnosis experience, but there were very few responses from Black parents–far fewer than are representative in the population.

“That was my first area of concern,” she said. “In our classes, we talk a lot about social justice, health equity and the importance of making sure everyone has access to the information that they need to make their healthcare decisions.”

The second phase of the project will bring in health equity experts to analyze and identify themes in the parents’ discourse in order to make recommendations for better health equity practices and how to ensure families are receiving and able to access the research and resources needed at the point of diagnosis.

“Our health equity experts also represent all of the diverse groups that we are asking about. We tried to reflect diversity in all of the different teams,” Meredith said.

In the third phase of the project’s first year, Meredith and her team will work with an interdisciplinary team of medical professionals including pediatricians, geneticists, genetic counselors and obstetricians. This team will look at the parents’ feedback along with the recommendations from the health equity team. They will explore how they can integrate these recommendations into their current practices and then offer these recommendations to their own respective organizations.

The second year of the project is focused on the dissemination of recommendations to medical organizations and clinicians. The recommendations made by the medical professionals will be used by Meredith and her team to build a white paper for medical and advocacy organizations about how to implement those recommended strategies for research dissemination to Black and Hispanic new and expectant parents of children with Down syndrome into their practices.

Meredith and her team will also build a learning module housed within HDI’s online Learning Center. The learning module will be reviewed by all 36 members of the research team, including the family members from the first phase.

Throughout the PCORI application process, Meredith worked closely with Michelle Hoverston, who played a big role in preparing budget and proposal documents, and Harold Kleinert, who encouraged the PCORI application and provided vital assistance throughout the process. Meredith believes a large part of the reason HDI was awarded the PCORI Engagement Award is because she, HDI, and her partnering organizations have demonstrated commitment to public health equity and marginalized communities for many years. Meredith has worked with HDI since 2012 and is the director of Lettercase National Center for Prenatal and Postnatal Resources. She had letters of support from organizations that have partnered with Lettercase for over a decade. Meredith is also the mother of a child with Down syndrome, which she notes as a reason she is so personally invested in this research.

Mother and father with a baby with Down syndrome

UK Human Development Institute Resources Formally Recommended by American Academy of Pediatrics for Families of Infants with Down Syndrome

In a clinical report released on April 18, The American Academy of Pediatrics recommended resources administered by the University of Kentucky Human Development Institute to pediatricians across the nation. These resources are recommended to be distributed by pediatricians to families learning about a prenatal  diagnosis of Down syndrome.

The report directs medical providers to Lettercase: National Center for Prenatal and Postnatal Resources, which has been housed within the Human Development Institute since 2012. Lettercase offers both print and digital resources that provide “accurate, balanced and up-to-date information for new and expectant parents learning about a diagnosis of Down syndrome and other genetic conditions,” according to the program website at lettercase.org.

“The guidelines in this report are really the definitive recommendations for pediatricians,” said Stephanie Meredith, director of Lettercase. “So to be included in that, especially when there are just a handful of resources listed… It’s just a real honor.”

The Lettercase “Understanding a Down Syndrome Diagnosis” book was originally developed in 2008 by Meredith and her husband, Justin. Harold Kleinert, who was, at the time, Human Development Institute Executive Director, was the principal investigator of Brighter Tomorrows, a grant funded through the U.S. Center for Disease Control Cooperative Agreement with the Association of University Centers on Disability (AUCD) to improve physicians’ capacity to provide accurate information to families upon the diagnosis of Down syndrome in their child. Brighter Tomorrows, which is also listed in the American Academy of Pediatrics report as a resource for families, has now merged with Lettercase as one national center.

Meredith and Kleinert had a vision of the societal need they could begin to meet by bringing their resources together. Generally, according to Meredith, grant-funded programs have a natural shelf life, as grants come with finite funding usually dispensed over a set number of years; so while Brighter Tomorrows was initiated through a two-year development grant and a subsequent one-year national dissemination grant Meredith and Kleinert found funding for Lettercase through book sales and various other revenue streams.

“It was kind of this piecemeal hardscrabble program, but we’ve made it flourish,” said Meredith. “It’s been a labor of love for [the Human Development Institute] and the Joseph P. Kennedy, Jr. Foundation to support this program, because it was definitely driven by wanting to meet a need that families have, as opposed to just fulfilling the cut out terms of a grant… We figured out a funding structure because we believed in the purpose of what we were doing.”

The Human Development Institute is part of a nationwide network of University Centers for Excellence. The inclusion of the Human Development Institute in the American Academy of Pediatrics report positions the institute as a leading national resource. For Lettercase resources, click here. For more information on the Human Development Institute, click here.

b/w photo of infant with black hair

HDI to Host Prenatal Disability Education Summit

On May 13, 2022, the National Center for Prenatal and Postnatal Resources, housed at the UK Human Development Institute will host the Prenatal Disability Education Summit at the Residence Inn Baltimore at the Johns Hopkins Medical Campus. This event is sponsored by the Joseph P. Kennedy, Jr. Foundation (JPKF) and will bring together national medical, advocacy, bioethics, industry, and policy leaders to collaboratively identify current challenges and potential solutions in the ethical provision of prenatal screening for disabilities.

Leaders from five national obstetrics, genetics, and pediatrics organizations will meet alongside bioethics experts, industry representatives, academics in disability studies, and leaders from federal agencies and 12 national disability advocacy organizations representing multiple conditions that can be diagnosed prenatally. The event will be held in Baltimore at the Johns Hopkins Medical Campus.

JPKF Trustee, Alex Pender, says, “The Joseph P. Kennedy, Jr. Foundation (JPKF) is thrilled to sponsor and be a part of the Prenatal Disability and Education Summit. For more than 75 years, JPKF has pushed for progress, inclusion, and respect for people with intellectual disabilities. The Foundation has helped inspire and advance a wave of landmark federal legislation providing support and programs for the disability community, including the Community Mental Health Act, the Individuals with Disabilities Education Act, and the Americans with Disabilities Act. This summit is an important step forward to advance the way in which women and families are given a medical diagnosis at the early stages of pregnancy and will be pivotal in how doctors care for the women and children these practices will impact most.”

Stephanie Meredith, the event organizer and the Director of the National Center for Prenatal and Postnatal Resources says this event will be the first of its kind to bring together such a diverse coalition of stakeholders to discuss strategies for making sure that patients undergoing prenatal screening get the support and information they need when learning about disabilities.

Meredith shares that, “Research shows that patients continue to struggle to get information about disabilities that meets their needs at that vulnerable moment when receiving prenatal screening results. They want to know about the medical issues and genetics, but they also want to know what life is like for people living with these conditions and their families. This is particularly vital because people with disabilities are part of a historically marginalized population, so we must make sure discussions about disabilities are based on accurate and up-to-date information without being clouded by stereotypes. And the stakes are high because patients can experience lasting trauma when they don’t receive the information and support that they need.”

Meredith adds, “As prenatal screening efforts increase, we are heading into a looming public health crisis of genetic information without a sufficient infrastructure for patient education and support. That means the work of this interdisciplinary team is essential to ensuring that all stakeholders are working together to meet the needs of vulnerable families and to provide clinicians accurate and up-to-date information and training about disabilities.”

The Summit will:

  • Assess the current state of education about disabilities for expectant parents undergoing prenatal screening.
  • Review collaborative accomplishments since the last Down Syndrome Consensus Meeting in 2008.
  • Establish collaborative goals in the areas of public policy, organizational policies/guidelines, research, and ethical practices for the next decade to ensure that families receive accurate, up-to-date, and balanced information, resources, healthcare, and support they need following a diagnosis or screening results and to help families and clinicians better understand a more up-to-date vision of people living with disabilities.
  • Discuss best practices for building relationships between the disability advocacy and medical communities and discuss strategies for the education and training of medical and genetics professionals to better understand current life outcomes for people with disabilities.
  • Produce a directory of stakeholders who want to continue to work collaboratively on disability education in the prenatal setting

The primary sponsor of the event is the Joseph P. Kennedy, Jr. Foundation, and other vital sponsors include The National Parents First Call Center, a program of the Massachusetts Down Syndrome Congress, Down Syndrome Diagnosis Network, The National Down Syndrome Society, The Trisomy 18 Foundation, Sunflower Neonatology Associates, Case Western Department of Bioethics, and Genetic Support Foundation with support from the Kennedy Krieger Institute at the Johns Hopkins Medical Campus, and the Center for Dignity in Healthcare for People with Disabilities.

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.

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