Woman getting a bandage after shot

Southeast SuperHub Champions working to increase vaccine confidence 

Led by the Human Development Institute in partnership with Georgia State University, a coalition of advocates and community partners have taken on the important task of promoting vaccine confidence in the Southeast US. The COVID-19 Vaccine Information and Dissemination SuperHub for the Southeast region was organized with the goal to Increase vaccine access and uptake among the disability population in southeast region. As new variants of COVID-19 emerge, continuing the vaccine conversation is more important than ever.  

Barriers to vaccine uptake include hesitancy and access. Organizers of the Southeast SuperHub determined that members of the disability community can be the catalyst to increase the rate of vaccination among disabled people. Local Trusted Champions are in their communities discussing vaccine resources with those in their immediate circles in person and online. They are assisting with vaccine outreach and the dissemination of plain language resources developed by the Human Development Institute and Georgia State University. By having one-on-one conversations, Champions are helping to quell fears of the vaccine and answer questions with a personal approach. They are leveraging their status as trusted members of their communities to tailor the messaging to a local context.  

Champions are also breaking down barriers in vaccine access. The plain language resources disseminated by Local Trusted Champions are available in multiple languages, which are important as many members of the disability do not speak English as their first language. Additionally, champions have identified ways in which vaccine sites may not be accessible to wheelchair users, those who are deaf and hard of hearing, or who have limited vision.  

Local Trusted Champions are compensated for their efforts by a stipend and are asked to complete a Local Champion 101 training, as well as a course on Motivational Interviewing. They are also expected to track their data and report back to the SuperHub during monthly meetings. Recruitment of Local Champions is ongoing, and though the project will conclude on September 30, Champions’ efforts will make a lasting impact. 

For more information, contact Natasha.Collier@uky.edu.

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.

A group of high school campers sitting in UK Student Center

UK Human Development Institute Welcomes Kentucky High School Upperclassmen with Disabilities to Apply to its Summer Leadership Experience Camp 

The University of Kentucky Human Development Institute will host its Summer Leadership Experience camp for its sixth consecutive summer. The transitional experience camp, which will take place July 6-9, welcomes rising high school juniors and seniors with disabilities in Kentucky to apply. The camp, which is sponsored by Kentucky’s Office of Vocational Rehabilitation, offers both in-person and virtual options. The in-person camp is available to students who are current clients of the Office of Vocational Rehabilitation, and the virtual camp is open to students who are not.  

According to Teresa Belluscio, Human Development Institute disability specialist and Summer Leadership Experience director, the camp is perfect for students who are planning to continue their education after high school, whether through a university, community college, internship, apprenticeship or other special program or training. The camp is designed to introduce the students to new experiences they can’t get at home, such as navigating a college campus and sharing space with a roommate, while also providing practical information sessions.  

The information sessions are available in-person to students, as well as virtually to parents and virtual campers. In previous summers, representatives from UK’s Disability Resource Center have come in for panel discussions, teaching students how to navigate disability resources in university settings and how to set up accommodations. In another information session, a representative from the Kentucky Higher Education Assistance Authority came to talk to students about KEES money–scholarships available to all Kentucky students based on GPA and other metrics.  

“We want them to understand the financial piece, because most high school students really don’t,” Belluscio said. 

In a hands-on activity, campers are given a schedule of active UK courses and taken to the campus bookstore to track down the textbooks needed for each course. Students work together in small groups to locate each textbook and write down the books’ prices. Belluscio then leads a discussion on the various options for college textbooks–such as renting, buying used books and eBooks. Belluscio and camp staff help the students understand why you might choose one type of book over another depending on the course and your own needs. 

Students at the in-person camp stay in residence halls on UK’s campus and eat meals in a UK dining hall. The days are broken up with recreational activities, such as rock climbing at the Johnson Center. Evenings are filled with fun and motivational guest speakers. 

“A favorite is Cody–who is autistic, went to college, has a degree and built a business for himself as a magician,” Belluscio said. “He’s an all-time favorite. He did multiple sessions last year, from a magic show, to talking about living with autism, to how he built his business.” 

Campers are sent evaluations at the end of camp each summer. Cody, the magician, got the highest ratings last year. 

“So we know which sessions [the students] really liked and what they enjoyed,” Belluscio said. 

Applications for the Summer Leadership Experience are due May 15. The in-person experience is limited to 20 campers. For more information and to begin your application, click here

For more information, contact Teresa Belluscio at 859-257-1714 or teresa.belluscio@uky.edu

Written by: Court Cox