According to the research by the First 5 Center for Children’s Policy, families often have to wait for months or even years before receiving the formal diagnosis necessary to begin receiving services. Such delays can be very detrimental to some children as there are often critical windows of time in which interventions for specific conditions such as Rett’s Syndrome or autism are most effective.
Notwithstanding the increases in postponements of services because of the pandemic that prevent children’s interactions with professionals or doctors, the chief reasons for delays are the bureaucratic inefficiencies and complexity of a state’s system for detecting and providing services to children’s developmental issues. Often, with little or no guidance, parents must deal with various health care providers, insurance programs, and special education departments, all of which have different eligibility criteria. One mother complained, “I felt like I had been shot out like a pinball and I just kept bumping into these different things that were kind of pushing me along.” It took two years before this parent obtained a diagnosis for her autistic daughter. This delay caused the loss of a critical period for the girl’s interventions that would have greatly benefitted her.
Unfortunately, there is often no cohesive system in which each department’s representative knows what the previous person has said and done. As an illustration of the complex issues that parents encounter in California, an interactive flowchart was created by the First 5 Center for Children’s Policy to show the various pathways that a family having a child under four years of age must navigate to receive support for a social-emotional or developmental health issue.
This chart does not include the first challenge of identifying a child’s problem and procuring a diagnosis. It does, however, illustrate several possible systems that a family may need to deal with, such as California Children’s Services, Medi-Cal, and Early Start programs. There are also local educational agencies, community-based programs, county mental health plans, and managed-care plans.
Taking steps to improve the system, California is expanding and clarifying early intervention eligibility. It is making improvements in its collection of statewide data and accountability for managed care plans. Developing preventative services for young children at risk for mental health or developmental problems has also been included. Sometimes, when a child is small, preventive services for young children with treatable problems can keep such conditions from becoming worse.