KYLEND Trainee: Meet Abby Wrightson. Abby has long, curly brown hair and is wearing an orange blouse, smiling for the camera.

KYLEND Trainee Spotlight: Abby Wrightson

Meet one of the LEND Trainees, Abby Wrightson!

Abby is currently a third-year student in the University of Kentucky’s Doctor of Physical Therapy program. Living alongside an aunt with Down Syndrome, she was able to witness some challenges of life with a disability and life as a caregiver. This led her to an interest in working with children and adults with neurodevelopmental disabilities.

Since middle school, it has been a goal of Abby’s to help people with disabilities function to their fullest capacity as children and through their transition into adulthood. She is also very passionate about providing better support to family members and caregivers of people with disabilities.

As a LEND Trainee, she hopes to grow the knowledge and skills to allow her to act as a provider and advocate for people with neurodevelopmental disabilities. 

Abby is currently enrolled as a trainee in the University of Kentucky Human Development Institute’s (HDI) Leadership Education in Neurodevelopmental Disabilities (LEND) program. LEND is a five-year grant from the Health Resources and Services Administration Maternal and Child Health Bureau in partnership with the University of Louisville and Eastern Kentucky University. 

These programs share the overall mission of improving the health of infants, children, and adolescents with autism and other neurodevelopmental disabilities. LEND aims to increase the number of professionals with the knowledge and skills to provide evidence-based screening and diagnosis, as well as support to individuals and families.Visit www.hdi.uky.edu/kylend to learn more. Contact the Kentucky LEND Project Director caroline.gooden@uky.edu with any questions or to schedule an informational session for your department and interested students!

Meet Cameron Tyrrell: He has short blonde hair and is wearing a black t-shirt looking to the side

KYLEND Trainee Spotlight: Cameron Tyrrell

Cameron Tyrell is a second-year doctoral student in the Special Education program at the University of Kentucky with an emphasis in Interdisciplinary Early Childhood Education (IECE). He obtained his Master of Education in IECE from the University of Kentucky, a Rank II certification in IECE, and a master’s degree in Gender and Women’s Studies. 

Cameron’s experience includes serving as a lead preschool teacher and a paraprofessional of children with and without disabilities through Fayette County Public Schools, Head Start, and other early care and educational settings. 

His research interests include family experiences and measuring the quality of early intervention services of young children at home and in preschool. Through being a part of the LEND program, he hopes to gain more clinical experience and understanding of service delivery for young children with disabilities outside of the classroom setting.

Cameron is currently enrolled as a trainee in the University of Kentucky Human Development Institute’s (HDI) Leadership Education in Neurodevelopmental Disabilities (LEND) program. LEND is a five-year grant from the Health Resources and Services Administration Maternal and Child Health Bureau in partnership with the University of Louisville and Eastern Kentucky University. 

These programs share the overall mission of improving the health of infants, children, and adolescents with autism and other neurodevelopmental disabilities. LEND aims to increase the number of professionals with the knowledge and skills to provide evidence-based screening and diagnosis, as well as support to individuals and families.

Visit www.hdi.uky.edu/kylend to learn more. Contact the Kentucky LEND Project Director caroline.gooden@uky.edu with any questions or to schedule an informational session for your department and interested students!

LEND Trainee Spotlight: Julie Caudill-Clark. She has long, ginger hair tied back and bright, green eyes. She is wearing a navy floral top and headphones, smiling for the photograph.

KYLEND Trainee Spotlight: Julie Caudill-Clark

Julie Caudill-Clark, a doctoral student in Eastern Kentucky University’s Educational Leadership and Policy Studies Program, is a current LEND Trainee. Her current studies focus on Special Education and she is completing requirements to become a Board-Certified Behavior Analyst (BCBA). She also holds a master’s degree from Roosevelt University in Teacher Leadership and Special Education. 

In her teaching positions, she has taught children with Autism at the middle and high school levels, earning her an Illinois Highly Qualified Certification in Secondary Education for grades 6-12 in English, Math, Social Sciences, and Special Education. She also holds a Kentucky Teaching Certification for these areas and is certified in ages 3-21 as a Special Education Teacher. 

Currently serving as Director of Disability Services and Testing for Hazard Community and Technical College, she supports all students with disabilities at all campuses. She determines accommodations students can use in classrooms. 

Also serving as Chair for the Disability Services Workgroup for Kentucky Community and Technical College System (KCTCS), she works with other Disability Service Providers to develop the Disability Services Handbook. Additionally, her and her team facilitate training and materials for Faculty and Staff guiding support provided to all students.

Julie serves on the Board for Kentucky AHEAD as the Chair for Membership. This organization provides training, networking and support to other Disability Service Professionals at the college level and allows us to improve services provided at Kentucky colleges and universities. 

Julie hopes to expand her knowledge and abilities while continuing work in Kentucky!

Julie is currently enrolled as a trainee in the University of Kentucky Human Development Institute’s (HDI) Leadership Education in Neurodevelopmental Disabilities (LEND) program. LEND is a five-year grant from the Health Resources and Services Administration Maternal and Child Health Bureau in partnership with the University of Louisville and Eastern Kentucky University. 

These programs share the overall mission of improving the health of infants, children, and adolescents with autism and other neurodevelopmental disabilities. LEND aims to increase the number of professionals with the knowledge and skills to provide evidence-based screening and diagnosis, as well as support to individuals and families.

Visit www.hdi.uky.edu/kylend to learn more. Contact the Kentucky LEND Project Director caroline.gooden@uky.edu with any questions or to schedule an informational session for your department and interested students!

KYPSO Logo

Going beyond the requirements, UK HDI’s Kentucky Post School Outcomes Center sets exemplary standard for improving students with disabilities transitional outcomes after high school

In 2020, Kentucky students with disabilities who had exited high school in the previous year were asked which resource in high school had continued to help them the most in their current post high school lives. Of the 2,256 responses, the top response (39.2%) was “a teacher, counselor or principal,” followed next by “vocational training” (20.3%). 

The question comes from a YOYO (Youth One Year Out) survey, part of a federal data collection effort regarding the transitional experiences of students with disabilities one year after their high school exit. In Kentucky, the data collection is facilitated by UK’s Human Development Institute (HDI) on behalf of the Kentucky Department of Education, through an initiative called KYPSO (Kentucky Post School Outcomes Center)

KYPSO works closely with Kentucky school districts to create the YOYO surveys, train the educators conducting the one-on-one surveys, aggregate each district’s data into one statewide dataset and, perhaps most importantly, work with school district administrators to interpret their district’s data and create further goals and plans of action. 

The data collected by each district plays an important role in both policymaking and district funding. Kentucky goes well beyond simply checking the boxes to meet the federal requirements, though. 

“Kentucky has done an excellent job of making secondary transition a priority,” Dr. Tony LoBianco, principal investigator and project director of KYPSO, said. “We have kind of served as a model for a few other states and how they go about doing this.” 

The federal requirements for post-school outcomes data are relatively small. States must report, on the state-level only, three data points, those being the percentage of those who are no longer in secondary school, had IEPs in effect at the time they left and were:  

  1. enrolled in higher education within one year of leaving high school 
  1. enrolled in higher education or competitively employed within one year of leaving high school 
  1. enrolled in higher education, competitively employed, enrolled in other education or training, or in some type of employment within one year of leaving high school. 

While some states are able to meet these requirements without conducting one-on-one student interviews in every district, either by taking a smaller sample from a few districts or by using other data sources to determine values for the mandatory data points, a quick look at a KYPSO annual report shows that Kentucky’s efforts are focused on far more than meeting minimum requirements. Interviewing students one-on-one engages Kentucky school districts in all phases of a rich and thorough data collection and reporting process, missing no opportunity to improve transition outcomes. 

“The general public should care about [this] because we’re providing data that tells us about what the future of our youth is going to look like. People should know what kids with disabilities are doing,” Dr. LoBianco said. “People directly in the field of education should care about KYPSO because we’re giving them direct information about their kids and what they could be doing better.” 

As critical as the data is, KYPSO staff are aware that raw data can’t always tell the full story, and they hope to bring forth their expert analyses into Kentucky school districts to continue supporting student transition into adult life. An important clarification Dr. LoBianco makes about the work KYPSO does is that people with disabilities are not a monolithic group.  

“There are so many different needs, and what may work for one person may not work for another person,” Dr. LoBianco said. “I also think sometimes it’s underutilized the amount of support that we can offer. There is really nothing more valuable for schools to do than to sit down with some experts and have plans for how they are going to help our youth transition to adult life… We’re here to help [educators] with that, and I hope they use it.” 

KYPSO’s public data page allows users to view data by varying demographic combinations and by disability category, showing distinctive differences in the transitional experiences among varying groups. One noted disparity is that, among female and male respondents, females tend to have higher post-secondary education rates, while males tend to have higher employment rates. Having access to consistent annual data allows researchers and educators to notice and address these systemic trends. 

“I would love for there to be the ability to follow up longer term. We don’t know what’s happening five years out… ten years out…” Dr. LoBianco said. 

While KYPSO does not have the funding for longer-term follow-up right now, Dr. LoBianco sees an opportunity for future research. YOYO surveys are highly effective at allowing special education researchers and educators to know what is happening in the immediate year after high school, but transition outcomes, as a whole, extend much further.  

If you have questions or would like to chat about transition resources, KYPSO staff can be reached by email at information@kypso.org.  

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.