Two national disability-related organizations representing professionals and families recognized the accomplishments of Vanderbilt Kennedy Center (VKC) researchers. Three VKC staff members received Arc of Tennessee awards.
Elisabeth Dykens, VKC UCEDD co-director, received NORD 2018 Rare Impact Award
Elisabeth Dykens, Ph.D., received the 2018 Rare Impact Award for Research of the National Organization for Rare Disorders (NORD). The NORD Rare Impact Awards were presented on May 17 in Washington, D.C., at their annual awards ceremony.
Dykens is professor of Psychology & Human Development at Vanderbilt’s Peabody College of education and human development, and is professor of Pediatrics and Psychiatry & Behavioral Sciences. She also is co-director of the Vanderbilt Kennedy University Center for Excellence in Developmental Disabilities (UCEDD).
Dykens is a clinical psychologist and leading researcher studying rare genetic syndromes, including Prader-Willi, Williams, Angelman, and Smith-Magenis syndromes, as well as more common syndromes, e.g., Down syndrome.
For over 30 years, Dykens has been a dedicated researcher, clinician, teacher, and public policy advocate working to improve the lives of children and adults with rare genetic syndromes and other developmental disabilities.
In her comments at the NORD Award Ceremony, Dykens said, “My passion for people with intellectual disabilities and rare disorders started with my own family. My father was a psychiatrist, and a perk of his job as a state commissioner of mental health was housing on the grounds of a large, state psychiatric hospital. I spent my adolescent years hanging out with patients in my back yard, moved by their struggles, bemused by their quirks, and in awe of their strengths. I learned firsthand that competencies coexist with disorders, and carried this lesson forward into my research.”
Dykens has led the field of intellectual and developmental disabilities to a new appreciation of genetic etiologies in behavioral research. Since she began this research in the late 1980s, she has come to be regarded nationally and internationally as an authority on behavioral phenotypes. Theoretically and practically, her research has made a significant contribution to understanding the unique patterns of development found in specific genetic syndromes and to developing interventions to improve quality of life.
Dykens was an early proponent of positive psychology in intellectual and developmental disabilities. Her recognition and promotion of positive characteristics of persons with rare genetic syndromes has offered a new lens with which people view the field.
Doug Fuchs, VKC Investigator, received Learning Disabilities Lifetime Achievement Award
The Learning Disabilities Association of America presented its biennial Lifetime Achievement Award for advocacy on behalf of children and youth with learning disabilities to Doug Fuchs, Ph.D. The award was presented in February 2018 at the organization’s national conference in Atlanta.
Fuchs is Nicholas Hobbs Chair and professor of Special Education and Pediatrics, and a VKC investigator.
For more than three decades, Doug Fuchs and Lynn Fuchs have conducted research on assessment and instruction, working much of this time in close collaboration with hundreds of teachers and administrators in schools systems in Middle Tennessee and in other states. Their published research has influenced teacher practice across the country. Over time, their research has honed in on how to improve learning of “non-responders,” the lowest 5 percent of students who are not getting their instructional needs met in either general or special education.
The Fuchs have played a leading role nationally in the development of Response to Intervention (RTI). A multitiered program of intervention, RTI starts by screening all children in the general classroom to identify students at serious risk for academic difficulties. Their research findings have provided substantial evidence for RTI as one of the best methods for identifying students with learning disabilities and for providing preventative education services.
The Arc Tennessee Awards
The contributions of three VKC staff members were recognized by The Arc Tennessee at their annual Awards Banquet at the Tennessee Disability MegaConference on May 23.
Janet Shouse received The Arc’s Public Awareness Award. Shouse is a program coordinator in the VKC University Center for Excellence in Developmental Disabilities, with a focus on health care for adults with intellectual and developmental disabilities and employment. She is the parent of a young adult with autism.
The Public Awareness Award recognizes the breath of Shouse’s advocacy. Among her noted accomplishments are the blog that she writes for TennesseeWorks. Examples of work that has generated high reader interest include articles on the ECF Choices Waiver Program, self-determination, and galvanizing advocates and self-advocates to engage in the annual Disability Day on the Hill.
In the award nomination, Shouse was characterized as “the perfect example of a parent turned advocate turned communicator turned connector turned resource. Janet is a helper. She is intelligent, compassionate, and articulate.”
Megan Hart, director of Tennessee Disability Pathfinder, received The Arc Tennessee Self-Determination Award.
With the encouragement of her family during childhood, Hart began making her own choices and following her own interests. She has become a strong advocate not only for herself as an individual with a disability but also an advocate for others.
At the university Hart attended as an undergraduate, she found she was challenged getting to classes and taking part in social activities because of lack of accessibility on the campus. She successfully advocated for more curb cuts, ramps, elevators, and other accommodations that benefitted others beyond herself and in the end improved that campus’ accessibility.
Hart’s career choices reflect her commitment to self-determination and advocacy. After completing an M.A. in human development counseling at Vanderbilt’s Peabody College, she worked as a community relations coordinator for the Technology Access Center of Middle Tennessee for 2 years, and then for 3 years as a funding specialist and council liaison with the Tennessee Technology Access Program. She joined Tennessee Disability Pathfinder in 2009 as education and training coordinator, and she became director of Pathfinder in 2012.
In the award nomination, Hart was described as having “the skills of a model advocate. She makes decisions about her own life and empowers others to do the same. She is knowledgeable about disability civil rights and responsibilities and helps educate others. She is a problem solver who listens and learns and reaches out to others.”
Preston Vienneau, administrative assistant at VKC TRIAD, received The Arc Tennessee Work Initiative Award.
Vienneau took part in Putting Faith to Work, a VKC pilot program in which a congregational team worked with an individual with a disability to identify work-related strengths and interests and employment opportunities. Vienneau’s interest in data entry led to his employment at TRIAD, where he enters data from 40 to 50 workshops per year, and he organizes materials for teachers, administrators, and families attending TRIAD workshops.
Vienneau’s supervisor wrote, “Preston is what TRIAD is all about. When I work with him, I realize that we are working to ensure people with autism spectrum disorders are living meaningful lives, which often means having a job they enjoy and that challenges them. We do what we do better because Preston is here showing us what our work aims to do.”
Vienneau is a self-taught artist and loves sharing art with his co-workers. In a past interview, Preston said, “I want people to enjoy art and for it to make them experience different feelings like happiness. Being able to bring people joy through my art is a wonderful thing.” His work has been shown at The ArtAble Collection of Village Green Hills, in the VKC art exhibition Coalesce, and in Emerging: Works of Three Young Artists with Disabilities at the Shimai Gallery at the Loveless Café.
Vanderbilt Dining Services received The Arc Tennessee Award for Inclusive Employer for its commitment to hiring individuals with intellectual and developmental disabilities.
Jan Rosemergy is director of VKC Communications and Dissemination.