BY MORGAN REISS
Historically, the field of early identification has been narrowly understood through the lens of early intervention: developmental concerns, delays, risk factors, and disorders must be identified and corrected as soon as possible in young children to re-align toward an anticipated developmental trajectory. The field has since evolved to recognize the importance of prevention and promotion through screening and surveillance measures to identify children before milestones are missed and intervention becomes necessary.
Another evolution is now burgeoning in our shared understanding of early identification that re-centers family goals and priorities for their child’s development and recognizes social drivers of health that influence healthy child development. However, disconnect around terminology, lack of evidence base, and funding to best support this shift hinders the field as a whole.
Much like how equitable and accessible local community systems integrate an array of supports and social services for families, that same level of intentionality and cohesiveness is critical to advance healthy child development at the national-level.
This is the first installment in a blog series on a project that leverages the combined power and reach of three national organizations and their networks to highlight and showcase the advancements communities are already enacting, but that need increased visibility and funding to truly transform the landscape of early identification.
The Centers for Disease Control and Prevention’s (CDC) “Learn the Signs. Act Early.” (LTSAE) program sought to improve the early identification of developmental delays and disabilities among young children during the COVID-19 pandemic by establishing Act Early Ambassador-led Response Teams made up of representatives from different early childhood programs. In the fall of 2020, the Association of University Centers on Disabilities (AUCD) and CDC conducted a needs assessment of the 43 Act Early Response to COVID-19 teams to better understand the impact of the pandemic on early identification efforts.
Among its findings, the needs assessment identified that early childhood programs and systems across the country faced formidable challenges in monitoring their own early identification efforts and assessing whether young children and their families did, in fact, receive services, due to both a lack of relevant data as well as the inability to connect data where it does exist.
In response to this finding, CDC’s LTSAE program funded the Coordinated and Integrated Data System for Early Identification (CIDSEI) project. Originally, there were two goals for this project. The first was to understand the current landscape of existing approaches to collect and connect data on monitoring, screening, referral and receipt of services – a set of activities our field commonly associates with the early identification of children with developmental concerns and delays. The second goal was to create a toolkit to support state, territory, and local early childhood programs in developing and implementing their own CIDSEI.
Early on in the pursuit of these goals, however, it became evident that there was ambiguity in the shared understanding of some key concepts: the difference between developmental monitoring, screening, and promotion; how families and providers are and should be working as partners in following a child’s developmental journey; as well as the importance of monitoring universally and routinely for all children regardless of whether or not a developmental concern may be present or anticipated.
But in order to enable the conditions for successful data sharing, there needs to be a fundamental restructuring of our broad understanding of early identification.
It was clear that before data collection and connection around early identification could begin, the CIDSEI project needed to shift its focus to first establish shared understanding of these concepts.
This blog is part of a forthcoming series on the CIDSEI project, culminating in the release of the forthcoming Roadmap for Advancing Family-Engaged Developmental Monitoring.
Below, we interview three driving stakeholders to better understand the partnership that led this project and its evolution:
• Cassandra Therriault, Program Specialist at the HMG National Center
• Elizabeth Howe, CDC/AUCD Fellow for the Act Early Response to COVID-19 Project at the AUCD
• Stephanie Walchenbach, owner of Waypoint Early Childhood Consulting and HMG National Implementation Expert
How did you/your organization come to be involved in this national partnership, and what unique perspective do you/your organization bring to the work?
Cassandra Therriault, HMG National Center: The goal of the CIDSEI project was to explore what it takes to understand, develop, and coordinate a system that captures data on all of the moving pieces of early identification: monitoring, screening, referral, and receipt of services. The HMG National Center was a natural partner for this project because we support local communities and states doing this work across the country already. The HMG Model is in tune with creating systems that make change on multiple levels, and our strength is leveraging what already exists to build out support for the needs of specific communities.
Elizabeth Howe, Association of University Centers on Disabilities: The AUCD is a national non-profit organization that supports university centers for excellence in developmental disabilities and addresses disability across the lifespan. When the COVID-19 pandemic began, it felt like we just lost access to children and families overnight. How do you identify children and families for early intervention services when services are closed? But the crisis also brought about renewed energy through a team approach to problem solving: there was a high level of concern, and there was money backing the work. We were finally able to implement the types of activities Act Early Response Teams wanted to do, and we knew we needed a more coordinated early childhood system and it needed to be done in collaboration with other organizations.
Stephanie Walchenbach, HMG Implementation Expert: I am an Implementation Expert for Help Me Grow and a former CDC LTSAE Ambassador, so I am familiar with the philosophy and values from both sides of the partnership aisle. I have long been invested in identifying ways to improve how we support child development, including moving developmental screening to a more relational experience. This has implications for data sharing and better understanding what families need. Tangibly, I work to re-define and re-examine how we put all the pieces of early identification into one picture, understand the differences in priority and language, and align where we talk about development and how. Shared understanding and shared value around the activity we’re measuring is an important, essential component of this process.
Why is coordination important for service provision, data sharing, and national alignment?
Cassandra, on resource coordination for families: For an early childhood system to be efficient, it needs to be inclusive, culturally relevant, and streamlined so that kids are able to access the services they need when they need them. Many existing early childhood systems are difficult for families to navigate because the system doesn’t work in a way that is easy to understand. The landscape of services is unorganized and inaccessible, so a model like HMG brings what is necessary from all other entities to families in a digestible way. It is imperative to identify developmental delays as soon as possible because we know that early identification increases the opportunity for valuable intervention, promotes a child’s developmental health, and can even improve life course outcomes. But we need to be looking broader than developmental delays too: the sooner we can understand a family’s goals and priorities, the sooner we can support the coordination necessary to assist in achieving those goals, which may include early identification.
Elizabeth, on data coordination for systems: There are many different programs that provide services to young children and their families, and each may have a different focus or reason for providing services. If we can begin to understand in a coordinated, centralized way what services families are engaged in, then we can reduce duplication of services and confusion for families.
Stephanie, on agency coordination on the national level: Each of the three organizations leading the CIDSEI project have a similar audience: people who care about early childhood, have an eye toward prevention, and an interest in services being family-centered and user-driven. Any one organization could have done a similar project among their own audience and had good learning come of it, but expanding to a partnership model allowed a much broader audience to use as a sounding board, get a better sense of what stakeholders are invested in, and resulted in less siloing. As we envision best practice, it’s a real strength to be more intentionally inclusive, and that’s something to model top-down. Because of these efforts, this project has been so much more about listening, observing, and teasing out what is happening in the field right now to be clearer as a field on what we do to support families upstream, and support this work as a whole.
There were three major partners in the CIDSEI project:
• Help Me Grow National Center
• Help Me Grow North Texas (unavailable for interview)
• The Association of University Centers on Disabilities
Other key partnerships:
- The CIDSEI Advisory Committee
At the onset of the CIDSEI project, an Advisory Committee was established to inform this effort with representation from several early childhood organizations. The Advisory Committee met quarterly over the course of the project period.
- The HMG CIDSEI Affiliate Work Group
From May-August 2022, the Help Me Grow National Center convened a work group of nine HMG systems to inform the development of this resource
- Centers for Disease Control and Prevention’s “Learn the Signs. Act Early.” Program
How did the project and partnership evolve as a result of the work on this project?
Elizabeth: The first phase of the CIDSEI project was all about exploring: reading websites, reports, and talking to people to make sense of what is out there now and what people are saying they need. Through this work we heard that accepting where families are is key to engaging them, and that early intervention may not be their main priority at a given time. So much of what came from this project emphasizes the critical importance of moving toward placing much more emphasis on intentionally ensuring families can get the help they need, when they need it, according to their priorities at the time.
Cassandra: In the early phases of the CIDSEI project, we found that developmental monitoring was being discredited by being considered the “first step” of early identification, because it really is happening throughout the process and in partnership with many different stakeholders in a child’s development. Not only must developmental monitoring be universal and routine, it also needs to recognize what’s going really well in the child’s development; a much more strengths-based and priority-based strategy. We began to realize that among the components of early identification, there wasn’t a clear definition or measurement strategy to developmental monitoring. Clarity on this can help us develop an approach to coordinated, integrated data sharing systems, but first we need to recognize families are partners in developmental monitoring throughout the entire process.
Stephanie: Key informant interviews revealed that stakeholders want to normalize programs that value shifting the narrative around early identification and intervention toward helping people live more optimally instead of working from a deficit-based place. We then need to convince funding and policy partners that this is a priority, but there is a missing piece to the story. Developmental monitoring is not clearly defined nor measured, and if this piece is more deliberately defined then we can systematically reflect, through funding priorities on a national level, the fact that parents will always be the most longstanding and consistent locus of care in their children’s day to day. For the people funding and setting policy around these things, families as partners in the process just isn’t as clear as it may be for people in our corner of the field.
Visit our CIDSEI project webpage to learn more.
This effort was supported with funding from the Centers for Disease Control and Prevention (cooperative agreement 6 NU38OT000280-02-02).
Morgan Reiss is the Policy & Communications Specialist for the Help Me Grow National Center at the Office for Community Child Health at CT Children’s Medical Center.