Ep 171: Building Better Healthcare Through Disability Advocacy

Doreen Bestolarides, a nurse, advocate, and mother of a 36-year-old son with Down syndrome and congenital heart disease, shares how her family's experiences navigating healthcare inspired a lifelong commitment to improving care for people with intellectual and developmental disabilities (IDD). She recounts encountering stigma, misinformation, and lack of support after her son's birth, which motivated her to build parent support networks, advocate for better healthcare training, and develop educational programs for medical professionals. Doreen discusses her work with organizations focused on disability health, her efforts to educate clinicians about the unique needs of individuals with IDD, and her interest in palliative care after witnessing both inadequate end-of-life conversations and the importance of comfort-focused treatment. She emphasizes three key lessons: listen carefully to individuals, families, and caregivers; include people with IDD as central participants in their own care; and take action by applying knowledge and leading change, even in small ways, to improve health equity and quality of life for people with disabilities.