March is Developmental Disability Awareness Month (DDAM). To mark this awareness month, UKNow will be featuring Casey and his involvement with the UK Disability Resource Centre and the Neurodiversity Education and Social Initiative (NESI) programme. Read on to find out more about how the University of Kentucky supports people with disabilities throughout the year.
LEXINGTON, Ky. (March 28, 2024) — When Casey was diagnosed with autism at age 3, doctors told his parents they’d be lucky if he went to college. Now, as he pursues his PhD, Casey is on a mission to challenge people’s assumptions about what people with autism can and can’t do.
Growing up in Massachusetts, Casey says he was always a bit mean. He always felt like he had to prove himself. For students diagnosed with autism, expectations are typically lower. Casey and his family resented that notion. Thanks to his parents’ support, his grit and determination, and his passion for STEM, Casey eventually enrolled at the University of Kentucky. Against all odds, he was able to push the boundaries he was given, not just in education, but in society.
“I’m lucky to have a family that has supported me in everything I’ve done,” Casey says. “They were the ones that spoke up for me before I was even capable of doing it myself. Their support helped me realize that I don’t have to give up because of my disability. I still can be anything I want to be, even though I have to work harder to get there.”
At UK, every student belongs. The University is committed to supporting them from the moment they become a Wildcat, through graduation and beyond. Students like Casey are offered additional support through the Disability Resource Centre (DRC).
Housed in the Office of Student Services, the DRC works with qualified students with disabilities to help them gain equal access to university programs and services that meet their unique needs. Through consultation and advocacy with administration, faculty, students, and university partners, the Center strives to responsibly represent the needs of students with disabilities to the campus community. Serving more than 3,500 individuals annually, the DRC plays a vital role in fostering a sense of belonging on campus.
Casey first became involved with the Democratic Republic of Congo when she came to the UK in 2019.
“When I first came to UK, I suffered from severe test anxiety,” Casey says. “After being diagnosed with generalized anxiety disorder at the counselling centre, I went to the DRC for support. They were very helpful during the first few years of the programme, but thankfully I’m now at a stage where I no longer need them.”
With help from the DRC, Casey was able to manage his test anxiety, but he still felt like something was missing: a community to belong to.Then he heard about a program offered by the DRC called NESI.
The Neurodiverse Educational and Social Initiative (NESI) was designed to complement existing services offered across the UK that are dedicated to giving neurodiverse students, including those on the autism spectrum and those with social anxiety disorder, a sense of belonging and educational opportunities. Staff-led and student-led, NESI brings together students weekly to participate in activities such as dinner, board games and tabletop role-playing games. These meetings include discussions on social topics and life skills. Students are also referred to other resources across the UK that partner with NESI to work with neurodiverse students.
“We found ourselves spending a significant amount of time supporting at-risk autistic students across campus, which was tied to a lack of belonging on campus,” said disability support consultant John Kaldora. “At the time, UK was focusing on helping students feel more like they belong, so we thought this program would be a great fit to fill the gap for students with autism and social anxiety.”
Kaldora’s motivation for founding NESI was based in part on his own experiences as an undergraduate.
“Like Casey, when I was screened for autism in my sophomore year, my parents were told I would never go on to college,” he said. “It was hard to find my place in the undergraduate program. Autistic educators are finding their way into higher education and autism support programs to give current and future students a better experience than we had.”
More high school students with autism are going on to college, thanks to new academic and emotional support services designed specifically for them. More than 66% of students with autism don’t traditionally attend college two years after high school, according to a study published in the journal Research in Developmental Disabilities. Other studies have found that only about 41% of students with disabilities, including autism, graduate with a bachelor’s degree. Today, there are more than 125 support programs for students with neurodevelopmental disorders, most of which are offered at four-year universities, and the number is growing, according to the College Autism Network.
“Developmental disabilities such as autism, ADHD and learning disabilities are often invisible, yet people with these disabilities are here,” Kaldra says. “They make up a significant percentage of our students, faculty and staff, and the sense of community support for them is essential to achieving equal access to the UK experience.”
Kaldra believes the more we can do to make the world more accessible to everyone, the less accommodations will be needed. That’s true for students like Casey.
“Sometimes I feel like I’m the only autistic person on campus, but I know that’s not the case,” Casey says. “These thoughts make me feel very lonely, and I think that feeling is exacerbated by the fact that I’m a graduate student. I think having an environment like NESI where I can interact with other neurodiverse people reminds me that I’m not the only person like me at UK. Other graduate students and staff, both current and past, are involved, and it’s reassuring to know that there are people like me that I can call friends and peers.”
Every March, the National Council on Developmental Disabilities (NACDD) and its partners come together to lead Developmental Disabilities Awareness Month (DDAM). This annual campaign focuses on how people with and without disabilities can work together to build stronger communities. This year’s theme is “A World of Opportunity,” focusing on the goal of eliminating barriers that people with intellectual and developmental disabilities face in community living.
Stories like Casey’s are important stories to tell, especially since March, and remind us that finding a sense of belonging and community isn’t one-size-fits-all. While some people excel in new environments and jump into the unknown, others need a little more support.
The DRC isn’t the only place on campus that advocates for students like Casey. The UK Human Development Institute (HDI) advances efforts to build inclusive communities, address inequalities, and improve the lives of all people who experience disabilities across the lifespan. Founded in 1969, HDI reports to the Office of the Vice President for Research and is part of a national network of University Centers of Excellence.
NESI partners with HDI’s University and Career Studies programme to provide programming opportunities for neurodiverse students taking part in certificate programmes for students with intellectual disabilities. According to Kaldora, “At NESI, we want to reduce the barriers to access as much as possible. Participants come from all over the UK, from CCS programmes to doctoral students like Casey, to faculty and staff. No formal diagnosis is required to take part in NESI.”
HDI, in partnership with the University of Louisville and Eastern Kentucky University, has been awarded a five-year Leadership Education in Neurodevelopmental Disorders (LEND) grant from the Health Resources and Services Administration (HRSA) Maternal and Child Health Bureau. LEND programs share a common overall mission of improving the health of infants, children, and adolescents with or at risk for neurodevelopmental and related disorders, including autism. The primary focus of LEND is to increase the number of professionals with the knowledge and skills to provide evidence-based screening and diagnosis, and support to individuals and families.
The HDI LEND Residency Program is currently accepting applications for the 2024-2025 academic year. We will accept a total of nine trainees representing graduate students, people with disabilities, and families of people with disabilities. Trainees will participate in community and classroom experiences, thoughtful discussions with interdisciplinary leaders in healthcare, and leadership opportunities. Applicants may apply for admission online by April 1, 2024. To learn more about LEND, visit https://hdi.uky.edu/kylend. To apply online, visit https://uky.az1.qualtrics.com/jfe/form/SV_5vAMf2dLWxdaRV4.
As DDAM draws to a close, Kaldora is calling for continued support for students with neurodevelopmental disabilities. Not only does he encourage students to get involved with the DRC, he also encourages faculty to contact the Center for Teaching and Learning Support (CELT) for more information on how to implement universal design into their classrooms.
Caldora regularly trains staff and faculty across campus on how to build and support skills that will increase the success and well-being of students with neurodevelopmental disabilities. Contact the DRC at [email protected] or 859-257-2754 to schedule a consultation to answer specific questions about recommended accommodations, student issues, alternative texts for course materials, creating inclusive classroom environments for students with disabilities, and how to incorporate universal design principles into educational experiences.
NESI will be held every Monday at 3:30 pm in the Gatton Student Center East Wing through April 22. Students, faculty, and staff are welcome to attend.
This program is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) as part of a grant totaling $2,273,238. 0% of the grant funding comes from non-governmental organizations. The content is those of the authors and does not necessarily represent the official views or endorsement of HRSA, HHS, or the U.S. Government. For more information, visit HRSA.gov.