System and stakeholder coordination for enhancing early identification and early intervention for children with autism spectrum disorder and related developmental disabilities

The CDC's National Center on Birth Defects and Developmental Disabilities (NCBDDD) launched “Learn the Signs. Act Early.” (LTSAE) in 2004 to increase awareness of parents, health professionals, and early educators about developmental milestones and the importance of early identification of children with signs of autism spectrum disorder (ASD) and developmental disabilities. With the success of the “Learn the Signs” message, “Act Early” initiatives expanded through NCBDDD's collaboration with the Association of University Centers on Disabilities (AUCD) and the Maternal and Child Health Bureau (MCHB) of the Health Resources and Services Administration (HRSA). These initiatives bring together the systems of care to improve the lives of children identified to be at risk for developmental delays.

The Act Early Summits convened families, state agencies, policymakers, service providers, researchers, and other stakeholders with an active role in developmental disabilities to develop state plans using logic modeling guidelines from the Kellogg Foundation. Recent analyses of the state plans show common themes including increasing awareness about the LTSAE campaign and developing a common understanding of the opportunities and challenges to early identification and diagnosis. The state teams identified the needs and resources of the state to address barriers to identification, assessment, diagnosis, and intervention of children with ASD.

This session will address how states are confronting the many challenges in the current health care and educational systems for children with ASD and related developmental disabilities and their families. Through building and strengthening of the state team network, enhanced communication can be achieved among stakeholders.