History of the Missouri Autism Research and Response Agenda

Missouri Autism Research and Response Agenda (MARRA) is an exciting collaborative effort to develop public policy that addresses the needs of children with autism, their families, and the agencies that provide services. The idea for MARRA began during hearings held by the Missouri Senate Joint Committee on Autism, sponsored by Senators Roseanne Bentley and Sydney Johnson. As a result of these hearings, Dr. Anne Deaton, Director, Missouri Division of Mental Retardation and Developmental Disabilities, Department of Mental Health organized a symposium that was held on May 6, 2002, in Jefferson City. The symposium addressed the State's need for direction in developing public policy that would encourage comprehensive and cost-effective services for children with autism and their families.

Symposium participants included representatives from the Missouri Autism Advisory Committee; the Department of Mental Health; Missouri State Senate; the Department of Social Services; the Department of Health and Senior Services; the Department of Elementary and Secondary Education; the Coordinating Board for Higher Education; University of Missouri, Columbia; University of Missouri, Kansas City; St. Louis University; Southwest Missouri State University; University of Missouri, St. Louis; and Washington University. In addition to these table participants, scores of individuals sat in the audience throughout the daylong proceedings.

The participants pointed out that autism spectrum disorders (ASD) constitute a unique and important public health problem. The prevalence of these conditions approaches one per cent of the male population, and they are associated with enormous costs in terms of disability and required state-supported services. Currently, there is not enough scientific information internationally, nationally, regionally, or within Missouri to address the most pressing issues related to ASD, including high-quality data on incidence, prevalence, and the effectiveness of specific interventions and treatments.

Participants urged symposium members to move Missouri forward by focusing on collaborative research efforts and coordinated dissemination of information regarding existing and future services throughout the State. In response to this mandate, a planning team and subsequent task force made up of symposium representatives convened a series of meetings over an 18-month period that led to the development of the "Missouri Autism Research and Response Agenda (MARRA)."

MARRA establishes a cohesive, integrated research agenda that, if made operational, can positively affect the lives of people with autism spectrum disorder ( ASD ) and their families. This research and response agenda synthesizes what is currently known regarding ASD in terms of assessment/diagnosis, promising practices/supports, etc., and also addresses key questions yet to be answered or adequately addressed in the current literature. The intent of the MARRA document is not to capture a one-time effort but to establish a framework under which collaborative partnerships between stakeholders, research institutions, and service providers can enhance the lives of people with ASD and their families. Formalizing the MARRA documents and establishing a State-wide commission devoted to the specific problems inherent in autism spectrum conditions would ensure that this important work continues throughout the 21 st century.

Key to this effort is the establishment and implementation of a statewide screening effort; the formation of a registry and voluntary database that is capable of tracking the progress of affected families over time; and the development of sophisticated interagency collaborations to improve information sharing. This research and response agenda can further support Missouri 's role as a national and international leader in research, education, service provision, and public policy implementation regarding ASD.