Six Modules for Enhancing Disability Education in Genetic Counseling
Course Objectives
Objective 1: Develop foundational knowledge of disability terminology and communication strategies to effectively engage with patients, families, and communities while recognizing systemic inequities and barriers to care.
Objective 2: Analyze the history and impact of the Disability Rights Movement to understand how social, political, and legal frameworks have shaped healthcare access, advocacy, and equity.
Objective 3: Examine social and lifestyle dimensions of disability, including accessibility, education, employment, healthcare disparities, and community inclusion, to appreciate their influence on health outcomes and counseling interactions.
Objective 4: Engage with first-person narratives of individuals with disabilities and their families to deepen understanding, challenge assumptions, and recognize the diverse lived experiences within the disability community.
Objective 5: Navigate complex family dynamics in genetic counseling encounters by exploring differing perspectives, emotions, and values within families, while applying disability-informed, empathetic communication strategies that center the lived experiences of individuals with disabilities.
Objective 6: Integrate disability-informed perspectives into genetic counseling practice by applying knowledge from all modules to case preparation, contracting, family histories, genetic education/testing, and psychosocial support, with the goal of advancing equitable, well-rounded care.
Start Here
Please begin by clicking on “Community Participant Introductions” below to read about each participant who was interviewed for this course. After reading the introductions, click “Course Overview” to come back to the course page. Begin the course by clicking on the first module below, read the objectives, and then select “Begin Module One.”
After completing module one, you will be prompted to continue to module two, or you may exit the course and return later to take the remaining modules.
Throughout the course, learners will see reflection prompts labeled with light bulbs. As a learner, you are encouraged to journal your responses to reflect on at the end of the course.
Module One: Terminology, Communication, and Considerations
Objective 1: Define and apply respectful, inclusive terminology related to disability. Learners will gain familiarity with key disability-related terms and concepts and will practice using language that aligns with best practices in disability etiquette and identity preferences.
Objective 2: Develop effective and culturally sensitive communication strategies. Learners will identify and implement communication approaches that promote autonomy, dignity, and trust when working with patients with disabilities and their families.
Objective 3: Recognize and reflect on systemic inequities and barriers experienced by the disability community. Learners will examine real-world examples and personal narratives to better understand the social, structural, and healthcare-related challenges faced by individuals with disabilities.
» Begin Module One
Module Two: Disability Rights Movement
Objective 1: Describe the historical context and key events that led to the development of the disability rights movement, including early advocacy efforts and landmark protests.
Objective 2: Identify major U.S. legislation and policies (such as the Rehabilitation Act of 1973 and the Americans with Disabilities Act of 1990) and explain their significance in advancing civil rights for people with disabilities.
Objective 3: Recognize the contributions of disability activists, organizations, and grassroots movements in shaping societal change and promoting equity, accessibility, and inclusion.
» Begin Module Two
Module Three: Frameworks of Disability
Objective 1: Examine the social and environmental factors that influence daily living, relationships, and participation for individuals with disabilities, including accessibility, technology, and social dynamics.
Objective 2: Reflect on video narrative stories that illustrate the different social and lifestyle aspects of disability, identifying how these lived experiences can inform culturally responsive, inclusive, and person-centered approaches in genetic counseling practice.
Objective 3: Differentiate between the medical, social, and biopsychosocial models of disability.
» Begin Module Three
Module Four: Lived Experience – Stories from the Community
Objective 1: Learners will hear and reflect on stories from individuals with disabilities to deepen understanding of how social, structural, and personal factors shape lived experience.
Objective 2: Learners will identify common experiences or core values that inform an individual’s lived experience.
Objective 3: Examine how the lived experience of a person with disability may influence health care interactions.
» Begin Module Four
Module Five: Navigating Family Dynamics
Objective 1: Examine how disability influences family relationships, caregiving roles, stress, and resilience within diverse cultural contexts. Learners will reflect on how family systems adapt to both the challenges and strengths that arise when a member has a disability and consider approaches to support these dynamics in genetic counseling.
Objective 2: Analyze how disability can shift caregiving roles, communication patterns, and emotional responsibilities within families, and identify strategies genetic counselors can use to support equitable involvement of all family members.
Objective 3: Recognize the impact of cultural values, stigma, and community beliefs on family responses to disability, and apply culturally responsive approaches that honor diverse family systems, traditions, and coping styles.
» Begin Module Five
Module Six: Disability-Informed Genetic Counseling in Practice
Objective 1: Apply disability-informed principles to each stage of the genetic counseling process, from case preparation through follow-up and resource provision.
Objective 2: Identify opportunities to promote autonomy, accessibility and dignity while navigating real-world clinical constraints and family dynamics.
Objective 3: Integrate lived experience, social context, and rights-based perspectives into counseling interactions to provide more equitable, person-centered care.
» Begin Module Six
Resources and References
Patient Resources
This page provides genetic counselors resources to give to their patients, categorized by certain patient situations.
Provider Resources
This page provides resources for providers to use or read when prepping for a patient with a disability or after they have had a patient with a disability, categorized by certain patient situations.
Project References
This page lays out all references use for this project categorized by each module.
Acknowledgments
Thank you to Joni, Hanna, Rachel, Rebekah, Sara and Nicholle who spent time sharing their lived experiences through video narratives. Their effort will make a huge impact on disability-informed care in genetic counseling.
Additional thank you to the members of the community advisory board who dedicated their time to share their thoughts and perspectives about the content of this course.
Thank you for completing Enhancing Equitable Care: Perspectives on Disability! Feel free to email your thoughts and feedback on these modules to hollaluc000@gmail.com.