Ep 118: Redefining Quality of Life: A Parent's Perspective on Supporting Adults with IDD

Christine Clause, a dedicated mother and advocate, shares her profound journey of raising her son with developmental disabilities and her professional role at Neighbors Inc., a nonprofit in New Jersey supporting adults with intellectual and developmental disabilities (IDD). She recounts the challenges she has faced navigating the healthcare system, including a harrowing experience when her son was hospitalized with the flu and nearly died due to medical professionals' assumptions about his quality of life. Christine emphasizes the importance of family members asserting their knowledge and role in medical decision-making, and she highlights how showing a video of her son thriving in the community helped shift the hospital staff's perspective. She passionately advocates for better clinician education through programs like IntellectAbility's Fatal Five Plus training, which addresses preventable causes of death in people with IDD. Christine also underscores the need for family and staff training, the value of nurses in hospital settings, and the critical importance of recognizing individuals with IDD as people first. Her insights call for systemic change in healthcare and support services to ensure dignity, inclusion, and quality care for all individuals with disabilities.