Autism Speaks & The Early Access to Care Initiative Jamitha Fields Autism Speaks Collaborators: Rosa Avila, Christina Bethell, Amy Daniels AUCD 2014 November 11, 2014 Autism Speaks & The Early Access to Care Initiative Jamitha Fields Autism Speaks Collaborators: Rosa Avila, Christina Bethell, Amy Daniels AUCD 2014 November 11, 2014

The bottom line: the earlier we can intervene in a child’s life, the better How? –Intensive behavioral interventions: trained therapist working 1:1 w/ child, multiple hours/week Evidence-based behavioral interventions can significantly impact a child’s –Cognition –Adaptive behavior –Social interaction –Language Mounting evidence of long term benefits The power of early intervention

The path to early intervention Surveillance ScreeningDiagnosis Early Intervention

The main challenges  Delayed diagnosis Large gap between age at which reliable diagnosis of autism can be made (24 months) and average age at diagnosis (4-5 years)  Ethnic disparities in identification and diagnosis Racial and ethnic minorities are identified less frequently and diagnosed later than white counterparts.  Culturally-specific barriers may compound structural barriers to care

Early Access to Care  Organization-wide initiative to lower the age at diagnosis and increase access to EI services  Focus on underserved populations  Awareness campaign with the Ad Council (PSA Central)

Early Access to Care

 Resources for professionals  y-access-care/professionals y-access-care/professionals  Screening events  Research to understand/address barriers to diagnosis/services in underserved communities with focus on culturally adapted:  Screening in primary care  Early intervention

Early Access to Care Outcomes to date: Over 10K individuals access M- CHAT-R/month Three community screening events Increase in inquiries by linguistic minority communities –Spanish M-CHAT-R –Calls to autism response team –Targeted community initiatives (NYC Korea Community Autism Project)

The DRC is a Child & Adolescent Health Measurements Initiative (CAHMI) project that aims to: centralized, user-friendly, interactive 1) Provide centralized, user-friendly, interactive access to standardized national, regional and state-level findings from national surveys on child and adolescent health and well-being. knowledge, capacity, and inspiration 2) Build shared knowledge, capacity, and inspiration for using data to stimulate and inform system change locally and nationally—especially among state health agency leaders and staff, family advocates and policy leaders. Data Resource Center (DRC) Goals

Leveraging national data to advance Early Access to Care CAHMI & Autism Speaks are collaborating to: Develop an easy to use web-based data query of the Survey of Pathways to Diagnosis & Services by April 2015 –“Point-and-click” interactive access to Pathways data –Quick-glance “Learn about the Survey” resources –Data and methods reports Develop an ASD web portal by April 2016 –Provide resources & information on ASD for families, policy makers, advocates, and researchers –Provide data briefs and a chartbook on ASD among US children

The Survey of Pathways to Diagnosis and Services, 2011 Goal: To help researchers & policymakers understand the processes by which learning and developmental conditions are diagnosed and treated Design: Follow-up survey of the National Survey of Children with Special Health Care Needs Mode: Telephone survey followed by a mailed Self- Administered Questionnaire Eligibility: CSHCN aged 6-17 years identified as having ever been diagnosed with ASD, ID and/or DD Sample: 4,032 completed telephone interviews

Results from Pathways Note: The Pathways survey was not administered in Spanish. Hispanic children with ASD from homes where Spanish is the primary language may be under-represented.

Results from Pathways

Early Access to Care Connecting with the community: Facebook: EarlyAccessToCare

Collaborators Child and Adolescent Health Measurement Initiative, JHSPH Christina Bethell, PI Rosa Avila Narangerel Gombojav Scott Stumbo Elsa Sweek Autism Speaks Amy Daniels Nicole Jones Families CDC Team Cathy Rice Brian Barger

Thank you! Thank you!