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.

Harold Kleinert with white hair and beard smiling at the camera wearing a pink shirt and blue tie.

HDI 50th Anniversary Spotlight on Harold Kleinert

I was absolutely blessed to have had the opportunity to work at HDI.  I cannot imagine a better organizational mission than that of HDI for what I had hoped for my own career  – to work with leaders in the field at both the state and national levels; to partner with families, self-advocates, teachers, and other professionals on the front lines of quality services;  and to have had the chance to have taught a wonderful set of students here at UK. —Harold Kleinert, HDI Director Emeritus

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Two men with Down syndrome working on their phones.

Spring Seminar: Employment for Youth with Disabilities: Seeing a Brighter Future

“As an employer, I’ve been fortunate to have employees with intellectual disabilities who meaningfully contribute to our programs, and as a mother, I have been so proud of my own son with Down syndrome as he has worked in the community at a grocery store and is also working toward a career as a photographer, and I don’t think these are isolated cases of what success can look like. People with intellectual disabilities have much to offer when given the opportunity!” – Stephanie Meredith

Our Spring Seminar on “Employment for Youth with Disabilities: Seeing a Brighter Future” was held on Thursday, March 21, 2019 from 6:30 – 8:30pm ET, and it’s available now online.

The seminar was held at the UK Coldstream Research Campus Human Development Institute Training Room 1525 Bull Lea Road, Lexington KY. A link to the live video stream of the seminar was sent to registrants. Continue reading

Two men with Down syndrome in a meeting.

Research Brief Fall 2017: A Statewide Community Conversation about Post-School Employment for Kentucky Youth with the Most Significant Disabilities

by Chithra Adams, Harold Kleinert, Kathy Sheppard-Jones, Amanda Corbin & Malachy Bishop

Young adults with disabilities face multiple challenges in obtaining successful post-school employment outcomes. This situation has remained relatively unchanged despite nearly 25 years of federal attention to the issue, including mandated transition services and a series of additional significant legislative responses. Recent research by Carter, Austin, and Trainor (2012) highlighted the severity of the situation, showing that “just 26% of recent graduates with severe disabilities were working for pay in their community up to 2 years after leaving high school” and 43% of those who were employed “held jobs in which most other workers had disabilities” (Carter et al., 2016, p. 398).

KentuckyWorks is a five-year systems change grant project designed to directly impact post-school outcomes for youth with intellectual and developmental disabilities in Kentucky. KentuckyWorks is a collaborative, multi-partner project that aims to impact youth outcomes within each of the state’s 174 school districts, and the target population is defined as all KY transition-age students with the most significant disabilities. The goal is to increase positive post-school outcomes (integrated employment, participation in post-secondary education, or both) for students with the most significant disabilities in the state by 20 percentage points over the five years of this grant.

Read the Research Brief.

Boy with Jacobsen syndrome

Research Brief Spring 2017

Having a Son or Daughter with Jacobsen Syndrome/11q Deletion Syndrome: Perspectives of Parents

by Stephanie Meredith, Anthony Lobianco & Harold Kleinert

Jacobsen syndrome (JS) is a rare genetic condition that often causes intellectual disabilities and health issues and has recently been added to various cell-free DNA prenatal screening tests. This condition often includes multiple physical features, a blood disorder, serious congenital heart defects in about 56% of patients, and a range of intellectual disabilities (ID). Individuals may also experience mild to moderate impairment in expressive language, vision problems, digestive issues; and common infections of the upper respiratory system [Grossfeld, 2004]. However, because JS is relatively rare, psychosocial research has never been performed on this population. Correspondingly, a patient education resource about this condition has not yet been published that reflects “the medical and psychosocial implications of the diagnosis” identified as a priority in the ACMG guidelines when providing information to prospective parents learning about screening results.

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