The purpose of A Roadmap for Advancing Family-Engaged Developmental Monitoring (the Roadmap) is to introduce and describe family-engaged developmental monitoring (FEDM) a key component of a framework for children’s healthy development and family well-being that includes:

1. Developmental promotion
2. Family-engaged developmental monitoring
3. Screening
4. Referral
5. Receipt of services

The concepts presented in the Roadmap are based on the evidence-based assumption that children who may qualify for criteria-based developmental support programs like Individuals with Disabilities Act (IDEA) Parts C and B represent a subset of the children that are at risk for delay and adverse outcomes; therefore, universal processes should be in place to engage with families to promote positive development and proactively elicit concerns and risk factors.

The Roadmap is intended for use by providers and leaders at the program or system-level in the early childhood field (defined as all those that serve and interact with young children inclusive of medical, education, social service, community-based, faith-based, and other child serving sectors). The Roadmap offers opportunities to support family-engaged developmental monitoring at the program/practice and system-levels.

FEDM encompasses and expands upon the existing practices of developmental monitoring and surveillance in clinical and non-clinical settings to establish a shared understanding of best practice across the early childhood field and the families it serves. Inclusion of “family-engaged” in the terminology centers families as experts about their child and equal partners in the process. The expanded definition of FEDM codifies best practice, affirming a family-driven, asset-based approach that recognizes what is going well and identifies families’ priorities for their children, inclusive of risk factors like social drivers of health. The Roadmap includes evidence-informed strategies for both families and providers, and provides self-assessments to determine the extent to which providers, programs and systems are practicing FEDM.

Description: In January 2023, the HMG National Center released a new Roadmap for Advancing Family-Engaged Developmental Monitoring. The Roadmap presents family-engaged developmental monitoring as a key component of a framework for children’s healthy development and family well-being that includes developmental promotion, family-engaged monitoring, screening, referral, and receipt of services.

This roundtable discussion with the developers of the Roadmap and other affiliates across the HMG National Network focused on continuing to explore the concept of family-engaged developmental monitoring, its value, utility, implications for system-building, as well as potential applications and impacts. The roundtable discussion will help guide development of resources to support HMG affiliates and their local partners in utilizing the Roadmap and thinking around critical implications for system change.

Date: April 6, 2023

Session recording

Session slides

Resources:

• Read: A Roadmap for Advancing Family-Engaged Developmental Monitoring 
• Watch: Family-Engaged Developmental Monitoring 
• Watch: Coordinated and Integrated Data System for Early Identification (CIDSEI) 

The premise that family-engaged developmental monitoring (FEDM) supports developmental outcomes is grounded in theory, research, and federal guidance. Strengths of utilizing family-engaged developmental monitoring include:

• • Fostering protective factors
  • Creating a multi-faceted, longitudinal picture of a child’s development
  • Offering a more comprehensive cross-sector and whole-family approach carried out through ongoing and routine processes to address children’s needs early, regardless of the service setting
  • Increasing the likelihood of identifying children at-risk for developmental delay, allowing for timely connection to supportive services to support a healthy developmental trajectory
  • Being more culturally informed and accessible than screening, evaluation, and referral to traditional IDEA services

By clarifying the terminology and definition of FEDM and what it looks like in practice, the Roadmap can help programs and systems that serve families with young children to utilize FEDM strategies as part of their work in a more standardized way. The Roadmap acts as a first step on a path towards a coordinated and integrated data system for early intervention that fosters positive outcomes for young children and their families.

The premise that family-engaged developmental monitoring (FEDM) supports developmental outcomes is grounded in theory, research, and federal guidance.

Families observe the ongoing changes in the development and health of their children. This close relationship allows for family members to celebrate milestones and identify areas of concern in real-time. Additionally, families themselves know better than anyone else the impact of social and environmental conditions that their child and family experience from day to day. FEDM leverages the intimate knowledge families have of their children and circumstances, and pairs that with enhanced skills  to better understand and advocate for what their children need developmentally, socially, physically, and environmentally in order to grow to their fullest potential.

A focus on family-engaged developmental monitoring (FEDM) as a crucial, ongoing component of the framework for children’s healthy development and family well-being can help re-center power in the hands of families and is a focused strategy to support Black, Indigenous, People of Color (BIPOC) and other historically underserved or marginalized families.

A history of systemic racism and bias has impacted how BIPOC families interact with early childhood systems, such as the early intervention system. Children from families that are BIPOC, low-income, primarily speak languages other than English, or live in isolated communities are more likely to be impacted by social determinants of health that can in turn impact their developmental outcomes, and racism itself is a significant threat to healthy development and well-being. Families without ample financial resources and those living in areas with a scarcity of available services face barriers to access such as high cost, insufficient linguistic services, transportation, and other logistical obstacles on top of the biases that exist within the service system.

When families are centered in the prioritization, decision-making, and selection of services for their children, this expands early identification to be more inclusive and culturally appropriate. FEDM can be more culturally informed than screening, evaluation, and referral to traditional IDEA services given that it does not rely solely on methods or standardized measures that may not resonate with the family given the cultural and historical context. Moreover, leveraging targeted universalism, FEDM is an equity strategy that recognizes the community-based programs that historically and regularly interact with BIPOC families and their uniquely positionality to help support children’s healthy development and family well-being as trusted community partners. Systems practicing FEDM intentionally create strategic linkages between the family’s goals, concerns, and needs and the trusted community-based supports designed to serve them.

Family-engaged developmental monitoring encompasses a wide range of evidence-based best practices, including:

• Valuing families as the main source of knowledge and expertise related to their child’s health and development
• Affirming and reinforcing developmental strengths in the child’s life, thereby creating a positive feedback loop of family-driven activities that support positive developmental outcomes
• Utilizing monitoring tools such as the CDC’s Learn the Signs. Act Early. developmental milestone checklist to facilitate conversations
• Documenting the child’s current skills, abilities, and milestones, and any or all concerns about development or social drivers of health, and paying equal attention to both developmental progress and concerns
• Gathering and documenting both risk factors and protective factors in the child’s growth environment at the family and community-level, and asking caregivers if or how they see risk factors or protective factors shaping their child’s developmental progress
• Eliciting family priorities, especially when more than one need is identified or shared
• Asking caregivers longitudinal questions, such as how they see progress or concerns changing over time and revisiting priorities, questions, and concerns at later points
• Asking caregivers about what other programs or providers say about their child’s development; when useful, ask permission to share or request information with those programs to get a more varied perspective of the child or family across time or topics
• Continuing to monitor throughout screening, referral, and receipt of services (if screening and services are determined as appropriate by the provider and family)
• Recognizing and addressing cultural considerations and language access needs

The framework for children’s healthy development and family well-being offers a conceptual model of strategies that support positive developmental outcomes and identification of developmental delays or disabilities at the youngest age possible.

The framework is grounded in the research and literature on ecological theory, family centered practices, and developmental systems approach. It reflects an asset-based approach that prioritizes promoting positive developmental outcomes, and that families are leaders in their child’s development and health and should be engaged as such. The components of the framework include activities that support children’s positive and healthy development and, in doing so, allow for early identification of any developmental delays or disabilities that may emerge over time in young children.

The five components of the framework are:

1. Developmental promotion
2. Family-engaged developmental monitoring
3. Developmental and autism screening
4. Referral for services
5. Receipt of services

Why the CIDSEI project matters

This Coordinated and Integrated Data Systems for Early Identification (CIDSEI) project aimed 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 delay &/or disabilities (DD). The need for system coordination for tracking and monitoring children is to ensure their receipt of services and to make the processes effective and efficient to prevent unsuccessful linkage to supports and services or loss to follow-up.

About the project

The CIDSEI project developed from a needs assessment that indicated limited ability across the early childhood sector to use early identification data to ensure young children and their families received services when needed. To address this issue, over the course of 2021-2022 the CIDSEI project aimed to explore and enhance state and territory capacity to improve the collection, management, interpretation, and dissemination of data related to developmental progress and early identification of young children with developmental delays or disabilities. This work aimed to support states and territories in their efforts to better identify areas of improvement to inform policies and practice.

This project focused on the development, implementation, and evaluation activities that support state and territories in improving the collection, management, interpretation, and dissemination of data to guide decision-making related to the four steps of early identification of young children with developmental delays or disabilities. The steps of early identification include:

1. Parent-engaged developmental monitoring
2. Developmental and autism screening
3. Referral for services
4. Receipt of early intervention

The CIDSEI project was funded by the Centers for Disease Control and Prevention (CDC) and was administered through a cooperative agreement with the Association of University Centers on Disabilities (AUCD). The Help Me Grow National Center led a series of project deliverables as a contractor of this project.

Read this project description for more details

Purpose & Goals

The goal of the CIDSEI project was to identify:

challenges and barriers for data collection to determine what is required in states and territories for a CIDSEI,

which states are implementing components of a CIDSEI well,

develop, assess, and share materials and resources encapsulated within a toolkit to facilitate data sharing and information exchange across early childhood programs/systems.

The intent of the CIDSEI toolkit is to support the development of data systems across multiple states and territories and aid in the tracking and monitoring of young children with possible developmental delays or autism to ensure children’s receipt of vital services to enhance their development. 

AUCD

The Association of University Centers on Disabilities (AUCD) is a membership organization that supports and promotes a national network of university-based interdisciplinary programs.

These programs serve and are located in every U.S. state and territory and are all part of universities or medical centers. They serve as a bridge between the university and the community, bringing together the resources of both to achieve meaningful change.

AUCD supports this national network through:

Leadership on major social problems affecting all people living with developmental or other disabilities or special health needs

Advocacy with Congress and executive branch agencies that fund and regulate programs used by people with disabilities

Networking and partnering with other national organizations to advance the network’s national agendas

Promoting communication within the network and with other groups by collecting, organizing, and disseminating data on network activities and accomplishments

Technical assistance provision on a broad range of topics

Learn more about AUCD here: https://www.aucd.org/template/index.cfm

Help Me Grow North Texas

In response to the opportunity to partner with CDC/AUCD on this project HMG NC has engaged a HMG implementer, HMG North Texas, as HMG affiliate who will work with the HMG NC on the outlined deliverables for this project. HMG North Texas will leverage their current “Early Childhood Intervention“ (ECI) pilot in place, which has a focus on improving the collection, management, interpretation, and dissemination of data that includes monitoring, screening, referral and receipt of early intervention services for children with developmental delays, disorders and disabilities.

HMG North Texas has engaged a well-rounded team of leaders to support the project, including, their State Child Health Coordinator, Senior Directors overseeing local Part C, Home Visiting Connection Programs, their Centralized Access Point and Navigation Directors, and leadership overseeing current Community Alignment work associated with a local and complementary AUCD grant. Integral to HMG North Texas’s plan, will be implementing and testing a Referral Improvement Plan, resulting in an improved and efficient restructure to merge duties of the ECI Referral & Intake Team with HMG North Texas Navigators. Data gathered from North Texas’ implementation of the Referral Improvement plan, will additionally inform key recommendations in the CIDSEI Toolkit and plan.

Learn more about Help Me Grow North Texas here: https://helpmegrownorthtexas.org/

Council Members will harness their knowledge of materials and resources from their perspective organizations and projects to inform a toolkit for states and territories. The Advisory Council will communicate and disseminate this project’s findings and resulting toolkit.

Council Members include:

In March 2022, the HMG National Center invited a select group of HMG Affiliates to apply for a spot on the CIDSEI Affiliate Work Group. The HMG  work group is the final phase of this year-long project and is designed to bring HMG affiliate leaders to the table to co-develop and finalize a CIDSEI Toolkit and set of recommendation for system builders interested in enhancing or establishing their work related to the data collection and early identification.

Learn more about the CIDSEI Affiliate Work Group experience in this brief