Roles for State Maternal and Child Health Programs in Building Systems of Care for Children and Youth with Autism Spectrum Disorders

Background: The increasing incidence of children identified and diagnosed with autism spectrum disorders (ASDs) poses a major challenge to state maternal and child health (MCH) programs as they try to meet diverse and often complex needs of these children. Indeed, no one single agency can effect the system change needed to insure that that all children and youth with ASDs receive early and comprehensive screening, diagnosis and treatment. As a result, states have used this as opportunity to form and strengthen interagency and interorganizational partnerships and to develop new policies, programs, and financing mechanisms that could strengthen the system of care for all children and youth with special health care needs (CYSHCN). Methods: The State Public Health Autism Resource Center (SPHARC) convened a partnership group to develop strategies and approaches to help states build their systems of care for CYSHCN. At the same time, SPHARC collected data on state efforts and activities from the TVIS, a national survey of state MCH programs conducted by AMCHP, Act Early summit data, state autism implementation grantees, and select state interviews. Results: The result of this policy and research work is a policy framework that presents comprehensive roles for MCH programs along with best practices, data on state activities, and tools for state assessment. From this policy framework, MCH leaders at the state and local levels will have the tools and the data from other states to determine appropriate roles and approaches to take in building, improving, and sustaining these systems of care.