Storytelling Guide

Please remember that no one knows your story better than you, and we encourage you to share your experiences in a way that feels authentic to you and your loved ones. 

• Child’s name, current age, age of diagnosis, and medical condition 
• Facts about the condition and its rarity or prevalence 
• Name of primary children’s hospital and distance from your home 
• Number of hospitals and providers you’ve visited 
• Number of tests, procedures, and/or surgeries your child has gone through 
• How your child is currently doing 
• Where you live 

Legislative goal: Support the Children’s Hospitals Graduate Medical Education (CHGME) program, which advances pediatric care and is the only bipartisan federal program that supports training pediatricians and pediatric specialists.  

• How many pediatric specialists does your child see regularly? 
• Why is having a specialized pediatric workforce important to you and your family? 
• Could you share a specific instance where you felt the specialized training of pediatric health care providers made a significant difference in your child’s treatment or care? 

Legislative goal: Protect and strengthen Medicaid, which is the single largest source of health care coverage for kids in the U.S. Further, CHA wants to ensure there is appropriate and consistent financing for the pediatric provider workforce.  

• What insurance does your family have? 
• If you have private insurance and Medicaid, how do the plans work together to meet your child’s specialized needs? 
• How would streamlining reauthorizations and paperwork for providers improve care for children with medical complexities s? 
• How many hours have you spent dealing with administrative hurdles to ensure your child gets the care they need? 
• Can you share an experience where timely access to care was crucial for your child’s health, and how Medicaid played a role? 
• How has having access to Medicaid and/or CHIP helped your child’s quality of care/life? 

Legislative goal: Address the mental health crisis facing our youth and advocate for robust investment into expanding children’s access to a full range of pediatric mental and behavioral health services, as well as to grow the pediatric mental and behavioral health workforce. 

• Does your child have a mental or behavioral health condition for which they receive treatment? 
• How does your health insurance coverage impact your child’s ability to get care? 
• What mental or behavioral health resources or treatments would help your child that aren’t readily available? 
• Have you faced any delays or other barriers in initiating mental or behavioral health treatment for your child? 
• Has your child’s medical condition affected their mental health and how has your children’s hospital provided support?