Act Early Initiative: Federal and State Collaboration for Improving Early Identification of Autism Spectrum Disorders and other Developmental

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1 Act Early Initiative: Federal and State Collaboration for Improving Early Identification of Autism Spectrum Disorders and other Developmental Disabilities

2 CDC s Learn the Signs. Act Early. Katie K. Green, MPH, CHES Health Communication Specialist

3 Purpose of the "Learn the Signs" Program To improve early identification of autism and other developmental disabilities so children and their families can get the services and support they need as early as possible

4 "Learn the Signs" Program Components Health education campaign Act Early initiative Research and evaluation

5 "Learn the Signs Health Education Campaign Aims to change perceptions about the importance of identifying developmental concerns early Gives parents, professionals free tools to help track development Promotes awareness

6

7 "Learn the Signs" Act Early Initiative Improves collaboration among early childhood systems in states In collaboration with HRSA, AUCD, AMCHP Act Early Summits convened key state stakeholders Catalyst for states to develop plans for improving early identification Supports state-level priority efforts such as awareness, screening, provider training

8 Act Early Initiative Act Early Regional Summits (Federal Level) teams; 800+ attendees Act Early State Teams (State Level) 2008-present 45 active teams Act Early Ambassadors (Pilot) Ambassadors

9 Act Early Ambassadors The Act Early Ambassador project is designed to develop a network of state-level experts to improve early identification practices

10 Role of the Act Early Ambassador The Act Early Ambassadors act as a community champion to increase awareness activities and improvement of early identification practices Ambassadors conduct two activities over their term chosen from within 5 areas: Education and training, Act Early state team enhancement, Partnership development, ACT Curriculum training, or Outreach/public awareness

11 Learn More! About the campaign: About the Act Early Initiative and Ambassador Program: Katie Green Thank you!

12 Act Early Ambassadors Pilot Adriane K. Griffen, MPH, MCHES Association of University Centers on Disabilities

13 25 Ambassadors in 24 States! Cohort 1: 18 months, $6,000 stipend 10 Ambassadors: HI, IL, MA, MT, NC, NM, OH, RI, TN, WI originally 12 months, extended to 18 months Cohort 2: 12 months, $4,000 stipend 15 Ambassadors: AZ, CA, CO, CT, DE, KS, MN, NE, NH, OK, SC, SD, UT, VA, CDC s Autism and Developmental Disabilities Monitoring (ADDM) Network

14 Act Early Ambassadors Accomplishments Increased awareness and use of ACT Curriculum and LTSAE materials Increased collaboration with State Act Early Teams (83% state teams still active!) All states now have an Act Early action plan Outreach to libraries, places of worship, and child centers.

15 Percent Ambassadors 100% 90% 80% 70% 60% 50% 40% 30% Percentage of Time Spent on Work Plan Activities during Ambassador Program Cohorts 1 & 2 0% 1-20% 21-40% 41-60% 61-80% % 20% 10% 0% Education and Training ACT Curriculum Training Work with Act Early State Team Public Awareness & Information Dissemination Partnership Building & Collaboration

16 Ambassador Quotes Networking with professionals at the state level allows for increased communication about how agencies/individuals can work together to achieve greater impact. The Ambassador project has put me in places to add value within communities This position has changed my career solidified my commitment and involvement in the area of early childhood and early identification in my state Act Early was included in discussions and planning efforts I scaled the scope of activities to fit my available time and resources.

17 Highlights from Ambassadors Virginia - Deana McGuire Buck, M.Ed. ADDM ACT Early Ambassador - Walter Jenner M.S., C.A.S.

18 Deana Buck

19 But where are my tiara and sash?

20 My Ambassador Goals: Early Intervention and Early Childhood Providers Community College Faculty Share resources with early childhood providers Infant & Toddler Specialist Network Head Start

21 My Ambassador Goals: Use Autism Training Curriculum in VA Establish relationship with VA Chapter, AAP Provide Training for Physicians Work with Autism Center for Excellence to develop content for residents Autism Chapter Champion

22 Challenges Took time to accomplish tasks Too many ideas, not enough time Some confusion about the role, but great opportunity to talk about Act Early Wanted to do more with ACT Opportunities Brought energy to our Act Early Team Expertise of other Ambassadors helped VA Institutional use of LTS: AE campaign

23 Learn the Signs. Act Early. A Partner and Resource in the Early Identification of Developmental Disabilities in Your Community A Program of the National Center on Birth Defects and Developmental Disabilities Centers for Disease Control and Prevention Learn the Signs. Act Early.

24 24

25 Being an Act Early Ambassador afforded me. Introduction to key stakeholders in the state Connections to other Ambassadors to bring expertise to VA I m Virginia s Act Early Ambassador and I d like to Appointed to serve on communities to extend reach of LTS:AE Opportunities to connect efforts (for child find, training, collaboration)

26 Not an Act Early Ambassador? Not to worry Share LTS: AE People LOVE materials; the quality is amazing - well designed and organized. Designed for specific populations Figure out how campaign can be used to meet their needs Use LTS: AE with families Post widget on your website; use campaign materials with families Post links to great resources on websites and social media Help Your Act Early Team Be part of state team to improve system Improve early identification efforts Connect agencies and providers in state or community

27 ADDM ACT Early Ambassador Goals Accomplishments Challenges Uncovered Opportunities

28 Autism and Developmental Disabilities Monitoring Network

29

30 Multisite, multisource, records-based surveillance methodology Screening and abstraction of records at multiple data sources in community All abstracted evaluations reviewed by trained clinicians to determine ASD case status

31 ADDM Network Identified Prevalence of ASDs Combining Data from All Sites Surveillance Year Birth Year Number of ADDM Sites Reporting 8-year-old Population Number of children identified with ASDs Prevalence per 1,000 Children (Range) ,761 1, ,578 2, ,335 1, ,038 2, ,093 3, ( ) 6.6 ( ) 8.0 ( ) 9.0 ( ) 11.3 ( )

32 ADDM Network ASD Prevalence Reports 2007: First reports in MMWR SS representing 2000 & 2002 surveillance years 1 in year-old children in these communities identified with ASD 2009: Second reports in MMWR SS representing 2004 & 2006 surveillance years 1 in year-old children in these communities identified with ASD Autism prevalence increased 57% between 2002 and 2006

33 Autism Prevalence March in 88 children have and ASD Boys 4-5 times more prevalent 1 in 54 boys

34 78 % increase over the previous 5 years

35 Earliest Known ASD Diagnosis Median Age and Proportion by Diagnostic Subtype ADDM Network, 2008 (Combining data from 14 sites completing 2008 surveillance year) Subtype of Earliest Diagnosis: Autistic Disorder ASD/PDD Asperger Disorder Distribution of Subtypes: 44% 47% 9% Median Age of Earliest Diagnosis: 48 Months 53 Months 75 Months

36 A perfect fit. Adding the ADDM sites Education and Outreach effort to the Act Early Campaign... To drive down the age of diagnosis Increase referral to early intervention

37 Becoming an Act Early Ambassador CDC AUCD MCHB Learning the Signs!! HHS HRSA AMCHP NCBDDD UCEEDs

38 Developing Workplans

39 Free materials Did I mention they were free??!!! Milestone booklets

40

41 You don t have to be an Ambassador to be involved..if you have a website add the Milestone Quiz widget link your website with the campaign share the Go out and Play Kit.be a campaign spokesperson in your community help distribute materials in your neighborhood...did I mention they were free

42 Join us

43 Learn the Signs, Act Early. Activities Association of Maternal and Child Health Programs SPHARC-State Public Health Autism Resource Center Act Early State Systems Grants Act Early Ambassadors

44 State Public Health Autism Resource Center (SPHARC) Increase the capacity of states, particuarly Title V programs, in developing and implementing systems of care for CYSHN with ASD through resource development, technical assistance and peer learning Act Early materials on website

45 Act Early State Systems Grants Goal: Develop systems-related activities connected to state plans with a focus on linkages to early childhood systems starts third cohort of 10 states (AS, CA, GA, MD, NJ, NH, NV, OR, VA, WY) Features 5 states which have not had previous Act Early state systems grant or HRSA autism funding. One year grants of $15,000

46 2013 Act Early Ambassadors 25 Ambassadors representing: Alabama, Arkansas, Arizona, Colorado, Connecticut, Hawaii, Illinois, Indiana, Kansas, Kentucky, Louisiana, Maine, Massachusetts, Montana, North Carolina, New Hampshire, Ohio, Oklahoma, South Carolina, Tennessee, Texas, Utah, Vermont, Virginia, & Wisconsin Activities Include: Continuing past activities or trying to re-boot state Combination of new and veteran ambassadors with an emphasis on partnerships and targeted projects. Strategies Include: Developing teaching component for identification, promoting universal screening, targeting specific parts of the state

47 Act Early Ambassador Activities Quarterly technical assistance calls in coordination with Act Early systems grants. Mentorship with past Ambassadors Evaluation of ambassadorship and dissemination of materials Close collaboration with AUCD

48 Treeby Brown (202) Who we are? AMCHP Act Early Team Jennifer Bolden Pitre (Ambassadors) (202) Michelle Jarvis (Act Early Systems Grants) (202) Contact us for more information or questions.

49 Want to learn more? Join us! Act Early Networking Session Tonight: Sunday, February 10, :00-7:30 pm Congressional B

50 Questions? Katie K. Green, MPH, CHES Adriane K. Griffen, MPH, MCHES Deana McGuire Buck, M.Ed. Walter Jenner, M.S., C.A.S. Treeby Brown

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