Act Early Summit Project: A National Perspective Connecticut Act Early Forum January 25, Learn the Signs. Act Early.

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1 Act Early Summit Project: A National Perspective Connecticut Act Early Forum January 25, 2011 Presented by Jennifer Bogin, AUCD Developed in collaboration with Georgina Peacock & Cheryl Rhodes National Center on Birth Defects and Developmental Disabilities Centers for Disease Control and Prevention Learn the Signs. Act Early. Does it really take a village? Diagnosis * Medical care * Early intervention * Therapies * Insurance * Education Self-determination * Transition * Housing * Employment * Community 1

2 Act Early Regional Summit Project Maternal and Child Health Bureau/HRSA Combating Autism Act Initiative (CAAI) National Center on Birth Defects and Developmental Disabilities/CDC Learn the Signs. Act Early. Campaign Association of University Centers on Disabilities Regional Summits Act Early Summit Project Improving system collaboration by bringing together key stakeholders in early identification of children with ASD and other developmental disabilities Act Early Regional Summit Objectives Increase awareness of the Learn the Signs. Act Early. campaign Develop a common understanding among stakeholders of opportunities, challenges and barriers to early identification and diagnosis Develop state plans to enhance state wide early identification, diagnosis and service provision and coordination Create a national web-based forum 2

3 2007 Chicago, IL 2008 Kansas City, MO Albuquerque, NM 2009 Nashville, TN Salt Lake City, UT The Bronx, NY Sacramento, CA Atlanta, GA 2010 Seattle, WA Baltimore, MD Providence, RI Indianapolis, IN Regional Summits The processbring together key stakeholders Pediatrics UCEDDs & LENDs Families Medicaid Legislature Act Early Regional Summit Providers (state and local) DD agencies Part C/ Early intervention Public Health/ Title V Autism Organizations DD Councils Challenges and Gaps Identified by State Teams Funding (budget cuts) Few well trained professionals Lack of services Use of nonevidence-based practices Long waiting lists for diagnostic and treatment services Disparities among diverse populations 3

4 Examples of State Plan Achievements Florida: Created a flow chart to help professionals in the state navigate the system Kansas: reduced waiting lists for diagnostic assessments Oklahoma: M-CHAT screening is now mandatory at 18 months within the Part C system New Hampshire: Implemented M-CHAT training for providers especially reaching out to homeless children and children living in poverty New Mexico: Created a navigation wheel to help families understand the different systems and how to access them and customized CDC materials New York: Ran public service campaign which included PSA's and customized CDC materials South Carolina: Set up master clinician training program; created a roadmap Massachusetts: held two state summits and has three taskforces around different topics West Virginia: set up a small non-profit focused on raising autism awareness in their state What we ve done. 11 summits across the country 49 states and 6 territories 800+ total participants 55 logic models developed 38+ Minigrants awarded 12 4

5 State Team Leader Survey Administered by CDC and AUCD Feedback received from 37 state team leaders who attended Act Early Summits in Phase I, II, and III On-line survey completed by 17 team leaders 31 team leaders completed survey via phone interviews conducted by AUCD Survey questions addressed: Impact of summit participation Post summit activities Use of LTSAE materials TA needs As a result of Summit participation: Key Findings The majority of state team leaders rated the summits as helpful or very helpful in: Most state teams have or are developing a state plan and continue to meet Coordination of state efforts improved or increased States have engaged in activities focused on awareness, education and training, and policy change Strengthening existing partnerships to improve early identification (94.1%) Improving early identification (86.6%) Establishing new partnerships to improve early identification (76.6%) Use of campaign materials increased Post-Summit Activities Education and Training Programs have been established for physicians Training of education and early intervention providers Disseminating Act Early materials and including in presentations Curriculum development and dental-medical learning collaborative Awareness Public awareness campaign built on Act Early PSAs delivered on local radio stations Awareness activities for parents Dissemination of materials to early childhood providers 5

6 Post-Summit Activities Policy Change State team has created task forces on education/training, clinical services, family/advocacy, legislation, and research. Each task force has begun work on specific state-wide projects Interagency collaboration and planning activities for improved agency coordination (Worked to assure) funding maintained for preschool pilot program Identifying ways to reach underserved communities and populations (young parents, Hmong community and others) before the summit we didn t really have a plan in our state. We didn t really have anything coordinated for children with autism. The summit gave us a purpose and brought us all together. Even though we thought we all knew each other, the summit allowed us to bring new people to the table. It turned out that there were really important people missing, having them there has helped a lot. Since the summit the people on the governor's council have been more open to our recommendations. I think it s because we are giving them a clear idea of what we can accomplish. The summit was a perfect kick start to screening and diagnosis in our state. Now that we have been brought together it is up to us to keep the momentum going. I ve sat through so many meetings where people are trying to help but have no direction creating the logic model and our state plan have made our time at the summit worth it. 6

7 Next steps Technical Assistance from AUCD and CDC SharePoint Sites (state & national) Listservs Topical Webinars Future meetings Funding opportunities Further work with states through AMCHP Act Early Grants (10) Work closely with HRSA state demonstration programs on awareness (4) Conclusions Summits have provided a forum to improve system collaboration Informed future directions for CDC s awareness and Act Early activities Strengthened partnership with the AUCD network Created the opportunity for synergy between HRSA and CDC For more information Learn the Signs. Act Early. campaign Act Early Regional Summits Jennifer Bogin at jbogin@aucd.org 7

8 Amazing things happen when people connect. 8