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Boy with Jacobsen syndrome

Research Brief Spring 2017

Published: April 13, 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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HDI Announces Applications Open for Developmental Disabilities Graduate Certificate

Published:

Applications are now open for the University of Kentucky’s Human Development Institute Graduate Certificate in Developmental Disabilities. The purpose of this Graduate Certificate is to prepare students from a broad range of disciplines to play a leadership role in providing services and supports for people with developmental disabilities and their families. In addition to classroom learning, students will also have the opportunity to participate in a practicum and learn directly from individuals with developmental disabilities and their families.HDI Announces Applications Open for Developmental Disabilities Graduate CertificateRead More…



Spring Seminar: “Serving Those Who Served Us: Understanding Military Culture and Disability Awareness in College”

Published: March 24, 2017

Student veteran success within higher education is dependent in large part on higher education’s understanding of military culture. Since the gap appears to be at its largest on campuses nation-wide, it is imperative that we make the effort to better inform those who are involved in student success. While military experiences vary widely, all veterans regardless of their experience come back to a culture that views them differently simply because of that service. – Tony Dotson

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Photo of iPhone with accessibility features open.

UK HDI announces new Universal Design class and certificate program

Published: March 20, 2017

The University of Kentucky’s Human Development Institute is offering a new undergraduate universal design class in fall 2017, HDI 350: Universal Design. Students from any discipline can take the HDI 350: Universal Design course. This interdisciplinary course provides students with an opportunity to learn about the foundations and principles of universal design. Additionally, after taking HDI 350, students who want to continue learning about universal design have the opportunity to enroll in the new universal design certificate program.

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Photo of people at the Kentucky Transition Summit

Kentucky Transition Summit Brings Community Together to Shares Ideas About Employment for Youth with Disabilities

Published: March 10, 2017

“The author Zig Ziglar was often quoted as saying, ‘the first step in solving a problem is to recognize that it exists.’  At the Kentucky Transition Summit we were joined by nearly one hundred-fifty concerned students, advocates, educators, administrators, and family members who took the first step by recognizing that we simply do not do enough to help our students with the most significant disabilities take their role in the workplace or in continuing education. They then took the next step by helping us identify four to five hundred ideas that could move us toward solving the problem.” Jeff White, KentuckyWorks Project Director

The Inaugural KentuckyWorks Transition Summit and Community Conversation took place on February 28 in Frankfort. Representatives from across the state packed into the large conference room at the Administrative Office of the Courts Building to begin a dialogue as to how to improve job outcomes for students with disabilities transitioning from school to the workforce. More than 150 participants, made up of educators, service providers, agency liaisons, parents and students, attended. Kentucky Transition Summit Brings Community Together to Shares Ideas About Employment for Youth with DisabilitiesRead More…



Andy Meredith with camera.

HDI Fund for Excellence Awarded for Expanded Photo Library to Improve Representation of Diversity, Employment, and the Lifespan

Published: March 7, 2017

HDI’s Stephanie Meredith and Harold Kleinert recently received the HDI Fund for Excellence award to expand our photo library of people with disabilities from diverse backgrounds for the entire Institute and also the National Center for Prenatal and Postnatal Resources. These photos play a critical role in portraying diverse people with disabilities across the lifespan as active participants in an inclusive world.HDI Fund for Excellence Awarded for Expanded Photo Library to Improve Representation of Diversity, Employment, and the LifespanRead More…



Minnah Farook Photo

Research Assistant Spotlight: Minnah Farook

Published: February 28, 2017

Article by: Bill Mazzoleni

Minnah Farook is currently a doctoral student in counseling psychology at the University of Kentucky. She is a research assistant for the KyPSO program. KyPSO stands for Kentucky Post School Outcomes. Minnah collects survey information and figures out reasoning for statistics.Research Assistant Spotlight: Minnah FarookRead More…



Photo of State Senator Will Schroder, Ashley Meier Barlow, Parent Allison Ball, KY State Treasurer Amanda Stahl, Advocate

Spring Seminar: “ABLE Accounts and other Financial Planning Tools: The Importance of Developing a Financial Identity”

Published: February 21, 2017

Millions of persons with disabilities and their families are often relegated to a life of poverty as a result of not being allowed to build even the most modest levels of resources. Persons receiving supports through Social Security, Medicaid and other publicly-funded programs are often disqualified from those supports if they have more than $2,000 worth of countable resources or assets.  –Carolyn Wheeler

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Man with Down syndrome working.

2017 KentuckyWorks Transition Summit & Community Conversation

Published: February 17, 2017

KentuckyWorks will be hosting two Kentucky events for family members, youth, professionals, and employers to discuss strategies for successfully transitioning students from high school to employment. A community conversation will be held at the Morehead Conference Center in Morehead from 5:30-7:30pm on February 27. A statewide transition summit, featuring national transition expert Dr. Erik Carter of Vanderbilt, will be held at the Administrative Office of the Courts in Frankfort from 9am to 4pm on February 28. All who are interested in participating are welcome to attend.2017 KentuckyWorks Transition Summit & Community ConversationRead More…



Photo of Jessica Gregory in a ballerina pose. She has brown hair and glasses.

Research Assistant Spotlight: Jessica Gregory

Published: February 11, 2017

Article by: Bill Mazzoleni

Jessica Gregory is a PhD student at the University of Kentucky. She is in her second semester studying school Psychology. She is originally from Kansas City, Missouri; however, she has been living in San Antonio, Texas for the past 8 years. Jessica moved to Kentucky for the PhD program at UK.

Jessica is currently at HDI working on the Quality of Life survey with Laura Butler. She obtains data regarding individuals who transitioned from Personal Care Homes. Jessica is interested in working with individuals whom have developmental disabilities. She did not receive any training about the special needs population during her Master’s Degree. Working at HDI gives her the opportunity to further her education.

Jessica stated, “I am really excited to be able to advocate for individuals who may not be able to advocate for themselves.”  She also added,” the more she works, the more she sees that there’s an extreme need for it.”

Jessica’s favorite flavor of ice-cream is chocolate chip cookie dough. Her favorite book would have to be one of the many books from the Star Wars series.