This project is deeply personal to me, inspired by my experience growing up with a younger brother with diagnosed autism spectrum disorder. Throughout my childhood, I saw how a complex diagnosis can create barriers among a family and a need for individualized support. I am passionate about integrating lived experiences into education to authentically highlight the real-world challenges and perspectives of individuals with disabilities and their caregivers. By fostering collaboration, I hope to create a training module that enhances awareness, understanding, and ultimately the healthcare experience for all.

While genetic counseling training provides a strong foundation in the medical aspects of genetic conditions, there is often less emphasis on the lived experiences of individuals with disabilities and their families. This project aims to bridge that gap by centering real voices and stories, helping learners better understand the social, emotional, and day-to-day realities that extend beyond a diagnosis. By doing so, it encourages more holistic, empathetic, and patient-centered care.

Lived experiences offer insights that cannot be fully captured through textbooks or clinical guidelines alone. They provide depth, nuance, and authenticity, helping health care providers understand how conditions impact identity, relationships, and quality of life. Incorporating these perspectives fosters cultural humility and challenges assumptions, ultimately improving communication and trust between providers and patients.

This project was developed in close collaboration with a Community Advisory Board made up of individuals with disabilities, caregivers, and genetic counselors. Their feedback guided the structure, language, and content of each module. In addition, participant interviews were thoughtfully integrated throughout the course to ensure that their voices are not just included but centered as a core educational component.

This training is designed for genetic counseling students and practicing genetic counselors who want to deepen their understanding of disability and improve their communication and counseling practices. It is especially valuable for those seeking to provide more inclusive, patient-centered care.

I hope learners leave with a deeper understanding that disability is not solely a medical condition, but a lived experience shaped by social, cultural, and environmental factors. More importantly, I hope they feel more confident engaging in meaningful, respectful conversations with patients, recognizing everyone as a whole person with unique values, goals, and perspectives.