Coordinated and Integrated Data Systems for the Early Identification (CIDSEI) of Young Children with Developmental Delays or Disabilities

Project Background
In September 2020, the Centers for Disease Control and Prevention (CDC) provided federal funding for the Act Early Response to COVID-19 Project to support Act Early Ambassador-led/co-led Response Teams to develop, implement, and evaluate activities to facilitate ongoing early identification efforts during the COVID-19 pandemic. During Year 1 of the project, the CDC, along with the Association for University Centers on Disability (AUCD), conducted a needs assessment to better understand the impact of the pandemic on early identification in the 43 funded states and territories. Results from the needs assessment indicated the pandemic had highly impacted early identification efforts. Respondents also reported they lacked access to data which could inform them about children and family's receipt of early identification services and that this challenge existed prior to COVID-19 with the pandemic exacerbating the problem. The Coordinated and Integrated Data Systems for the Early Identification (CIDSEI) of Young Children with Developmental Delays or Disabilities project was developed to address this challenge.

Project Overview
The purpose of this project is to address system coordination and enhance the ability to track and monitor children with and or at risk for autism spectrum disorder (ASD) and other developmental disabilities (DD). This one-year project (2021-2022) will develop, implement, and evaluate activities to support states and territories to improve the collection, management, interpretation, and dissemination of early childhood data to guide their decision-making related to the CDC’s “Learn the Signs. Act Early.” program’s framework for early identification of young children with developmental delays or disabilities which consists of four steps - (1) parent-engaged developmental monitoring, (2) developmental and autism screening, (3) referral for services, (4) receipt of early intervention. This project will support work to investigate and leverage existing successful models (e.g., Help Me Grow) to produce tools and resources for communities to implement promising practices related to a CIDSEI. Emphasis will be on the successful use of tools within systems in under-resourced communities. AUCD is partnering with Help Me Grow’s National Center (HMG National) to carry out this work.

CIDSEI National Advisory Council
A national advisory council has been convened to inform this effort with representation from national organizations as well as federal agencies. The advisory council meet quarterly over the course of the project period.

CIDSEI National Advisory Council Members

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 Please contact Elizabeth (Betsey) Howe at [email protected] with any questions.

This effort was supported with funding from the Centers for Disease Control and Prevention (cooperative agreement 6 NU38OT000280-02-02).