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About the Act Early Summit Project - older version

December 12, 2007

The National Center on Birth Defects and Developmental Disabilities (NCBDDD) at the Centers for Disease Control and Prevention (CDC) launched the "Learn the Signs. Act Early." (LSAE) campaign in 2004 to reach out to and educate parents, health care professionals, and child care providers about developmental milestones and the importance of early identification and intervention for children with signs of autism spectrum disorder (ASD) and related disabilities. The LSAE campaign can be credited with the creation and dissemination of tools and resources that have enhanced the quality and effectiveness of communication between parents and their children's health care and child care providers.

The impact of the LSAE campaign to date is evidenced by the results of national HealthStyles survey, which revealed parents who are aware of the campaign are significantly more likely to believe that the best time to get help for a child with autism is before 2 years of age. In addition, data from the 2004 and 2006 DocStyles surveys indicate that more pediatricians regularly screen for developmental delays (up from 87% in 2004 to 92% in 2006) and significantly fewer pediatricians advocate a "wait and see" approach when parents share a concern about their child's development (down from 30% in 2004 to14% in 2006). (Thomas & Kopfman, 2007)

Building on the success of increasing awareness among parents, health care professionals, and child care providers as a result of the LSAE campaign, AUCD proposed to assist NCBDDD in enhancing the capacity of states to respond to the increasing demand for evidence-based practices for children with ASD and related disabilities. AUCD proposed to work with NCBDDD to (a) convene two Act Early Regional Summits during Phase I, (b) support one-year of follow up work with state teams from these regions, and (c) disseminate materials from the regional summits and the state teams.

The Act Early Regional Summits will be a unique opportunity for key state leaders from the early detection and intervention community, including parents, state agencies, provider groups, autism and other related disability organizations, and relevant university personnel for the purpose of enhancing the capacity of states to respond to the increasing demand for evidence-based practices for children with ASD and related disabilities. The summits will build upon-and in some instances initiate-important relationships among key stakeholders in the field, provide forums to share important information, and serve as catalysts for the development of state teams on a regional basis.

One year of follow up support will be provided to state teams that will actively work to enhance the effectiveness of service provision and coordination for families and children with ASD and related disabilities. The follow up support will include ongoing communication on emerging and evidence-based practices and outcomes from other states, and will be intended to assist state teams maintain momentum in addressing relevant, state-level issues in ASD and related disabilities. Follow-up activities will provide an infrastructure for states to share practices, products, and planning efforts within their regions as well as across participating regions. Additionally, the state teams will serve as a mechanism for feedback to NCBDDD on the impact and utility of the regional summits and inform efforts to potentially expand this effort in future years.

Information from the summits and the outcomes of the work of state teams will be disseminated to the general public through a dedicated website linked to NCBDDD, AUCD, and the participating state entities. A small number of bound hard copies of the summit materials will be produced for archival purposes.

The expected outcomes of the Act Early Regional Summit project are:

  • Increased awareness of the LSAE campaign and its impact in the target regions.
  • The development of a common understanding among the stakeholders in each participating state of the opportunities, challenges, and barriers to addressing the needs of families and children with ASD and related disabilities.
  • The development of state teams that are effective in enhancing (or initiating, in some situations) state wide service provision and coordination for families and children with ASD and related disabilities.
  • The creation of a national web-based forum that disseminates promising and evidenced-based practices and other information that can be used to by stakeholders to problem-solve, strategize, develop innovative approaches in their states.