VKC Member Meghan Burke, Ph.D., BCBA-D, is a professor of Special Education whose primary line of research includes developing and testing interventions to improve access to services among individuals with intellectual and developmental disabilities (IDD) and their families. While her research focuses on individuals with IDD and their families (primarily parents and siblings), most of her research specifically focuses on autism. For example, Dr. Burke is currently developing a measure to characterize service access among individuals with autism from low-resourced communities.
In the interview below, Burke shares what inspires her research, what she has learned through her work, and how membership with the Vanderbilt Kennedy Center helps her achieve her goals.
Tell me about your attraction to developmental disabilities research.
I have a personal connection to disability. I am the oldest of five children. My brother, Ryan, just turned 30 years old. He works two jobs for a full, five-day work week. He loves traveling and seeing musicals. He also has Down syndrome. When I was growing up, I distinctly remember seeing my parents advocate for Ryan. When Ryan turned 3 and aged into school services, the school refused to educate Ryan with his peers without disabilities. My parents filed due process against the school. During that time, I remember meeting with legislators to talk about inclusion, asking neighbors to sign a petition for inclusive preschool settings, and watching my father (who was also Ryan’s attorney) argue Ryan’s case at the 7th Circuit Court of Appeals. Watching my parents advocate for my brother inspired me to conduct research to ensure all families are able to access services for their loved ones with disabilities.
What are your current research interests?
Broadly speaking, my current research focuses on improving access to services for individuals with intellectual and developmental disabilities (IDD), especially individuals from marginalized populations. To that end, I have several research projects focused on developing and testing advocacy programs or family navigators. The purpose of an advocacy program or a navigator is to help families develop the knowledge, skillset, and empowerment they need to access services. Our goal is to help ensure that families can immediately access needed services for individuals with IDD.
Do you have a story about a research participant or a breakthrough that illustrates the impact of your work?
Right now, we are conducting a clinical trial of an advocacy program for Latino, Spanish-speaking families of transition-aged youth and adults with autism. The families complete a 24-hour advocacy program about adult services (e.g., vocational rehabilitative services, Medicaid waivers, special needs trusts). The program is facilitated by the fabulous staff at The Arc of Illinois. At the end of the program, we receive several thank you notes from families. One family wrote:
“Les estoy sumamente agradecida a la Dra. Meghan BURKE por su preocupación en capacitarnos a nosotros cómo papás de personas discapacitadas, a la Señora Rocío del Grupo Arco, a Gaby quien tan amablemente nos preparaba todos los recursos para que la transmisión siempre fuera perfecta y de alta calidad. Gracias a todos los ponentes, todos muy bien capacitados. Gracias a todos ustedes quienes hicieron a lo largo de estas semanas que hasta se me hicieron pocas, el capacitarme para ser mejor Advocate para conseguir los servicios que mi hijo es elegible y tiene derecho a ellos. También gracias a todas las mamás que semana con semana con sus comentarios y dudas, ayudaban a poner en la mesa circunstancias que a mí no se me hubieran ocurrido, y con las cuales todas aprendimos más allá de las ponencias.
“I am extremely grateful to Dr. Meghan Burke for her concern in training us as parents of disabled people, to Mrs. Rocío from The Arc, to Gaby who so kindly prepared all the resources for us so that the transmission was always perfect and of high quality. Thank you to all the speakers, all very well trained. Thank you to all of you for these weeks…to train me to be a better advocate to get the services my child is eligible for and entitled to. Also, thanks to all the moms who week after week with their comments and doubts, helped to put on the table circumstances that would not have occurred to me, and with which we all learned beyond the presentations.”
To me, this quote sums up the importance of the work we do with families.
What are your reasons for becoming a Vanderbilt Kennedy Center (VKC) Member? How does the VKC enhance the work you do?
The VKC is unlike any other center in the United States. VKC members are conducting innovative research to improve the lives of people with disabilities and their families. Everywhere one looks at the VKC, there is research that is shaping the field while also having a real impact on individuals in the disability community. I am in awe of my colleagues at the VKC. Reading about the work of others pushes me to think creatively and rigorously about my own work.
