California Health Report & Mercury News • Oct 5, 2020
As Karla Garcia of San Francisco watched her third child grow, she had a feeling something was different.
At 4 months old, Brianna still couldn’t keep her head steady or lift it up when she was on her stomach, a milestone babies typically reach by 2 months old. She also didn’t hold her mother’s gaze or look intently at other familiar faces. That’s something babies normally do within their first month of life.
But when Garcia raised her concerns with Brianna’s pediatrician, the doctor said it was too soon to tell whether or not her daughter’s development was normal. It would take Garcia another year and a half of persistently demanding answers and seeking help before Brianna finally received an official diagnosis: She had a genetic, neurological disorder called Rett’s Syndrome, which can result in developmental delays and numerous health problems.
“The hardest part was feeling like the pediatrician was not listening to me,” said Garcia, who is originally from El Salvador and has two older children. “The wait before we got an actual diagnosis was really hard.”
Garcia is not alone. In California, parents who suspect their child has a developmental delay often wait months or even years to get a formal diagnosis and to obtain services, according to research by the First 5 Center for Children’s Policy. By the time these children receive treatment — which is often contingent upon getting a diagnosis — they may have missed out on a critical window of time during which interventions for disorders such as autism or Rett’s Syndrome can be most effective. These delays have likely become more acute during the pandemic, as families are less likely to be visiting doctors for check-ups and children aren’t interacting as much with early childhood professionals who can spot signs of developmental challenges, experts with the First 5 Center said.
Sep 8, 2020
Karla and Brianna’s story highlights the challenges that a lot of families face when dealing with the early identification and intervention system and the important role that support systems can play.
Sep 8, 2020
This report highlights six key areas in need of attention in order to create an EII system that is family-centered and effective.
Sep 9, 2020
A new interactive flowchart from First 5 Center for Children's Policy walks users through the complex paths a family enrolled in Medi-Cal must navigate before they receive support, and provides real family stories as examples.