Since its inception, the Brandeis Genetic Counseling Program has had a strong disability focus. Students begin their training with experiences that provide valuable insights from the patient perspective that we hope will strongly influence their interactions as a genetic counselor with individuals who have a disability or genetic condition. The incorporation of disability awareness into the curriculum includes:
We invite several guest speakers throughout the fall semester of the students’ first year as part of the “Disability Module”. Some of the speakers are professional experts in human development, special education law, and disability awareness and inclusion in education. Students also have a chance to engage in meaningful discussions with parents, many of whom are active in advocacy groups, who have a child with a disability or genetic condition. These parents share their own family’s experiences with healthcare professionals and educators. Through the stories of our guest speakers, students learn about the joys and challenges of each family’s life and how each derives meaning from their experiences.
Fieldwork in a Community Organization:
In the fall of their first year, students also spend approximately one day per week in a setting (see below) that offers services to individuals with disabilities which may include autism, blindness, Down syndrome, or intellectual or physical disabilities. The settings are multidisciplinary and include educational, vocational and medical services. Students may be assigned to work with one particular person each week, spend time in a specific classroom, or rotate through different classrooms or with different service providers. This experience provides students the opportunity to develop their comfort level working with children or adults who have a range of abilities as well as develop relationships with educators or other providers who offer valuable services.
In the spring of their first year, pairs of students are assigned to a Family Pal. Our Family Pals are energetic families who have at one least child with a disability or genetic condition and have graciously agreed to spend 2-3 sessions sharing their story with our students. These visits may occur at the family’s home or in a public place and give students the opportunity to peek into the lives of these families. They learn about what it is like to raise a child with special needs, and witness some of the day-to-day challenges they face. This experience gives students tremendous insight into the impact that having a child with a disability or genetic condition has on everyone in the family.
Students, in both their first and second years, return before classes begin in January to participate in two days of programming dedicated to further augment their exposure to the lived experiences of individuals and families with a genetic condition or disability. All of the activities include open dialogue between the students, faculty and invited guests, making it a meaningful learning experience for everyone involved.