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Initiative Background and Data Facts

Early Identification and Referral

Initiative Background and Data Facts

Early Identification and Referral

This page was last updated on Dec 20, 2017 at 6:46 pm

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Initiative Background

Experiences that occur during the earliest years of life have a profound influence on a child's ability to learn, move, and interact with others. This is especially true for children with severe sensory and multiple disabilities for whom physical, communication, cognitive, social, and emotional developmental domains are deeply intertwined. A key responsibility of state deaf-blind projects is to work with state systems and local communities to identify children with deaf-blindness during the first three years of life so they can receive appropriate early intervention. 

This national initiative grew out of work begun by NCDB in 2006. Initial activities included substantial literature reviews and input from state deaf-blind projects and resulted 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 project personnel from around the country to identify key issues and effective strategies. This group provided much of the information used in the development of the first draft of the Early Identification and Referral Self-Assessment Guide.

Following the release of the Self-Assessment Guide, state deaf-blind projects asked for a companion resource that would help them enhance intervention for infants and toddlers. The Sooner the Better: A Framework for Training Early Intervention Practitioners on Deaf-Blindness was developed in response. It offers a collection of online resources that state projects can use to provide customized training and technical assistance to early intervention providers and families.

Data Facts

A total of 9,365 children are included in the 2016 National Child Count of Children and Youth Who Are Deaf-Blind. Of these, 564 are aged birth through two. 

Details about these infants and toddlers:

  • There are slightly more boys than girls
  • Nearly 6 in 10 are white
  • Almost all (95%), live at home with parents, extended family, or in foster care
  • Their identified etiologies reflect the broader birth to 21 population (nearly half have a hereditary syndrome or disorder)
  • At this young age, fewer have a documented vision or hearing loss than the overall population; instead, many have a suspected loss that requires further testing
  • A surprising number (6.7%) have cochlear implants
  • Many have orthopedic/physical impairments as well as complex healthcare needs 
  • About one in twenty are receiving intervener services

Details about newly identified children and youth included in the 2016 Deaf-Blind Child Count, as well as an evaluation of state deaf-blind project use of the Self-Assessment Guide, suggest the guide is having a profoundly positive impact on early identification in many states across the nation. Since its release in 2012, a number of state deaf-blind projects have used it to evaluate their early identification and referral efforts. They then used the findings to guide implementation of evidence-based practices to build the capacity of specific systems (most commonly Part C) to identify and refer children with deaf-blindness as early in life as possible.

Of the 1,265 newly identified children and youth on the child count in 2016, 329 (25%) were aged birth through 2. Of these, 199 (60.4%) were from 16 states that had used the Self-Assessment Guide

The greatest gains have been in nine states that participated in the Self-Assessment Guide pilot process in 2012. In 2011, the year before implementation of the process, these states had collectively identified 138 children aged birth to two—22.7% of children in that age range identified nationwide. In 2016, the same nine states had identified 212 infants and toddlers—37.6% of those identified nationwide. 


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