New Tool Shows Challenges Families Face When Children Have Developmental Concerns

Alameda, CA - Families can wait months or years from the time they suspect their child has a developmental delay to the time they are screened or receive services. 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.

As part of the project, the Center interviewed Karla, a San Francisco mother who faced multiple roadblocks in receiving screening, diagnosis, and treatment for her daughter with Rett Syndrome, a rare neurological disorder. Various system breakdowns led to an eight-month delay between when Karla first raised concerns to her doctor and when her daughter got services--and another year-long delay before she got a diagnosis.

"For years, families have voiced their frustration with the state's early identification and intervention system when seeking screening and services for their children," said Sarah Crow, Managing Director of the First 5 Center for Children's Policy. "During the COVID-19 pandemic, families have fewer touchpoints with providers, so this difficult system may be even less accessible than before."

In California, 70% of children with developmental delays aren't detected until the child enters kindergarten. Here and nationally, the lag in detection is worse for children of color. A recent Pediatrics study found Black children with autism were diagnosed three years after their parents first raised concerns. When developmental delays are identified early, interventions are more effective and yield greater life-long outcomes. The time period between ages 0 and 3 is especially critical, as this is a period of exponential brain development when intervention can have a large effect.

Along with the interactive flowchart and family stories, a Key Takeaways report notes areas where system improvements could be made, such as expanding eligibility for early intervention; improving statewide data collection; and increasing accountability for managed care plans. The materials are meant to help policymakers and advocates better understand what families and providers are facing in navigating the early identification and intervention system, and point to where improvements can be made.

"For the first time in many years, California is about to write new contracts with its Medi-Cal managed care plans. It offers the opportunity to increase oversight, accountability, and services for young children if managed care plans are incentivized to prioritize little kids care--and hold them accountable if they do not," Crow said.

The suite of resources is available here.