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Initiative Background and Data Facts

Early Identification and Referral

This page was last updated on Jul 19, 2016 at 12:01 pm


Initiative Background

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 we know that 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 physical, communicative, cognitive, social, and emotional developmental domains are deeply intertwined. State deaf-blind projects are challenged to work with state systems and local communities to identify children with deaf-blindness in the first three years of life. Even when combined vision and hearing loss is recognized, challenges exist ensuring that referrals to appropriate services are made. 

This national initiative grew out of the work of the NCDB Practice Partnership begun in 2006 to address the lack of children birth through two identified in the annual child count. This work included substantial literature reviews and input from state projects, resulting in the publication of a summary report, Early Identification of Infants Who Are Deaf-Blind. In 2009, NCDB 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. This focus group provided much of the information that was used in the development of the first draft of the Self-Assessment Guide. This tool allows state deaf-blind projects to analyze state and national data, gather information about systems (Part C, EDHI, medical, community programs) in their state serving children birth through two, and reflect on specific issues that impact identification and referral of infants and toddlers with combined vision and hearing loss. The current initiative promotes a technical assistance process that can be implemented by state deaf-blind projects to improve early identification and referral outcomes and provide appropriate and effective intervention to infants and toddlers and their parents. This work concentrates on building partnerships within the National Deaf-Blind TA Network and the broader early intervention community, especially Part C. 

Data Facts - Impact of Improvement Process

As of fall 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 two number has increased to 209, or 35.3% of the children in that age range identified nationwide. The nine states who have used the Self-Assessment Guide, created an action plan, and targeted a particular system are responsible for more than a third of the infants and toddlers (birth through 2) identified in the current count.

Even more dramatic is the number of newly identified infants and toddlers added to the child count by this group of states as well as other states who presented their work as part of the EI&R webinar series this past year. Of the 349 newly identified infants and toddlers on the 2015 Deaf-Blind Child Count, 174 (49.9%) were from this group of 16 states. These states were especially effective in identifying infants under one year of age.  Nearly two-thirds of all infants (64.6%) newly identified in 2015 came from this group.

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