Dawn Bailey, a family engagement specialist and advocate for children with complex medical needs, discusses the challenges of disaster preparedness for families like hers. Dawn shares her personal journey caring for her daughter who has significant medical requirements, emphasizing the inadequacy of standard disaster preparedness checklists for families with unique needs. Dawn highlights the need for policy changes and encourages families to continually voice their challenges to improve support systems.

Dawn is a mom of a daughter born with complex medical, cognitive, and physical conditions due to a rare genetic chromosomal abnormality, who had to navigate complicated and fragmented systems of care for over 19 years. As a result, Dawn has been committed to helping to improve the landscape of health systems and how they serve families and the community by sharing her lived expertise to improve care, programs, processes, data analysis, funding, and reimbursement models.

Resources

• Disaster and Families of Children with Disabilities: What Every Health Care Provider Needs to Know
• File of Life
• Disaster Preparedness for Children and Youth with Special Health Care Needs – American Academy of Pediatrics
• Policy statement–emergency information forms and emergency preparedness for children with special health care needs — Pubmed
• Disaster Safety for People with Disabilities – American Red Cross
• Emergency Kit Checklist for Families with Children and Youth with Special Healthcare Needs (CYSHCN) — CDC
• People with Disabilities — Ready.gov