Identifying Children Early: Sharing Success Across the National Initiative

Posted on November 11, 2015


Mark Schalock - NCDB Data and Evaluation Coordinator

National Need

Analysis of the National Deaf-Blind Child Count has shown us that, over time, early identification and referral of children with combined hearing and vision loss continues to be a challenge for state deaf-blind projects and other systems of service and support.   This is important because experiences that occur during the earliest years of life critically impact children’s abilities to learn, move, and interact with others. This is especially true for children with severe sensory and multiple disabilities, for whom bonding, communication, incidental learning, social interaction, motor development and mobility are particularly challenging.   

Mark Schalock, Julie Durando presenting at Summit 2015 on National Child Count

                                      National Child Count Session, Summit 2015

Over the five year span covering 2010-2014, the average number of children identified with combined vision and hearing loss under age three across all states and territories has been 598, which represents 6.2% of the total number. Even more significant, an average of only 72 infants under one year of age have been identified across all states and territories. This represents less than 1% of the total of children, birth through 21, identified in the National Deaf-Blind Child Count. During this same period, 47 states/territories had one or more years with no children birth-age one identified. Only 7 states identified children birth-age one each year.  NCDB, through the Early Identification and Referral Initiative, has promoted the use of the online Self-Assessment Guide (SAG).  This tool allows state deaf-blind projects to analyze state and national data, gather information about systems (Part C, Medical, EDHI, Community) in their state serving children birth through two years old and reflect on specific issues that impact identification and referral of infants and toddlers with combined vision and hearing loss.

A National Response to a National Issue

The SAG we have today has its roots in work started nearly 10 years ago in NCDB’s Early Identification Work Group.  This work included substantial literature reviews and input from state projects, resulting in the publication of a summary report, Early Identification and Referral of Infants Who Are Deaf-Blind. 

To further this work, NCDB, in 2009, conducted a focus group with state deaf-blind projects from around the country to identify key issues and effective strategies related to early identification and referral. What was learned from this focus group provided much of the information used in the development of the first draft of the SAG.

The draft SAG was piloted with 8 state DB projects who gave great feedback on format, process and content that we were able to use in refining the SAG.  NCDB field tested this new version of the SAG with 9 states, also providing technical assistance (TA) to complete the guide and develop an action plan. Again, we learned much from this field test, further refining the SAG, including making it a fillable PDF with self-populating data tables.

This extensive literature review, combined with strategies from deaf-blind projects with consistently high referral counts, along with repeated piloting and field testing, has provided a set of effective practices for use with systems.  These practices are housed in the Self Assessment Guide Toolbox, for use by the national deaf-blind technical assistance (TA) network.

Evidence of Effects

As of the fall of 2015, a growing number of the 49 state/multi-state deaf-blind projects have utilized the self-assessment guide, have targeted a system, and are beginning to implement one or more of the four key evidence-based practices. Some of the most compelling information is coming from the nine states who initially participated in the pilot process. In 2011, the year before implementation, this group of states had collectively identified 138 infants and toddlers birth through two.   This represented 22.7% of the children in that age range identified that year. This past year, in 2014, their collective birth through 2 years of age number has increased to 209, which represents 35.3% of the total birth through 2 population.  The nine states who have used the SAG, created an action plan and targeted a particular system, are currently responsible for more than a third of the children identified in the current count.

As this work continues, more state deaf-blind projects are discovering that they can increase the impact of their limited resources by using data-based decision making to narrow their focus and identify the early intervention system with the highest potential and feasibility for impact. Through the implementation of recommended evidence-based practices related to building relationships, developing carefully targeted materials, being clear about the benefits of referral and consistently following up with referral sources, state deaf-blind projects are building their capacity to increase the numbers of infants and toddlers with combined vision and hearing loss who are receiving appropriate early intervention services.

                                                                                          Jennie Maschek on the value of targeting the message

Join, Learn, Share and Take Action

State projects are having success using the SAG and there are lessons to be learned from their experience. The national EI&R initiative is sponsoring a series of webinars featuring individual states sharing their efforts in improving identification and referral with targeted systems in their states.  The webinars are at the following dates and times:       

Part C

November 18, 2015 @ 11 PST

Medical Community

January 13, 2016 @ 12 PST


February 10, 2016 @ 12 PST

Community Programs

March 9, 2016 @ 12 PST

The state deaf-blind project presenters will share with you the progress they have made and how they have managed success- all with limited time and resources.  What's the desired outcome?  Increased sharing of ideas and resources so our child find numbers for children birth-two can continue to improve as a nation. 

Mark your calendars!  We look forward to you joining the conversation!

Comments (4)

NCDB scores again! Developing a tool like this is yet another way to use technology to solve the problem of limited resources that all states face. Early identification is key - it opens the doors for possibilities. Without early identification, our kids continue to fall through the cracks. It is my hope that all 49 states begin to use this tool, identify children, and implement appropriate educational strategies and services for the parents and the entire team, starting with the OHOA Modules. "I have a dream..."

Thank you to the team at NCDB and to all of the states that continue to be on the front of forward progress!

Barbara Martin

Posted Nov 17, 2015 by Barbara Martin

Very impressive data.

Lisa  Lawter

Posted Nov 14, 2015 by Lisa Lawter

Mark....thank you for the nice summary of work in the area of Early Identification and Referral. This was very helpful!
Sherri Nelson


Posted Nov 13, 2015 by SHERRI NELSON

Thank you for articulating both the need for our network to find a way to identify children early, and the highlighting a successful tool to do so, Mark. We are indeed thankful for all the work across time to get to this point - thankful to all those who developed this tool, the state deaf-blind projects that use it successfully, and are now available to encourage and support others. As more and more projects discover that they can increase the impact of their limited resources by using data-based decision making to narrow their focus and identify the early intervention system with the highest potential and feasibility for impact, we will have even more to celebrate - children found early and progress made in their lives - early!

Linda McDowell

Posted Nov 12, 2015 by Linda McDowell

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