Introduction

This report is the 33rd edition of the annual National Child Count of Children and Youth Who Are Deaf-Blind, the first and longest running registry and knowledge base of children who are deaf-blind in the world. Begun in 1986 on behalf of the U.S. Department of Education, it represents a collaborative effort between the National Center on Deaf-Blindness (NCDB), its predecessors, and each state and multi-state deaf-blind project throughout the country, as well as projects funded in the Pacific Trust territories, the Virgin Islands, and Puerto Rico. Initially requested by the U.S. Department of Education as an examination of the discrepancy between the National Deaf-Blind Child Count and the Office of Special Education Programs’ (OSEP) annual counts of children and students with disabilities being served under IDEA Part C or Part B, the child count has expanded over time to inform the work of a range of OSEP-funded deaf-blind projects, including the current national, state, and multi-state technical assistance projects.

The National Deaf-Blind Child Count has been collaboratively designed, implemented, and revised to serve as a common vehicle to meet federal grant requirements for both the state and multi-state deaf-blind technical assistance projects and NCDB, as well as serve as a common data collection and reporting mechanism for use across the country. Consistent with the priorities under which NCDB, its predecessors, and the state and multi-state deaf-blind projects are funded, this national child count is used to help identify national and state technical assistance needs for children and youth who are deaf-blind, their families, and the service providers and systems that serve them.

The National Deaf-Blind Child Count is conducted each year to supplement OSEP’s Federal IDEA Part C and Part B child counts, which include children as deaf-blind only when deaf-blindness is their single disability. In contrast to OSEP’s Part C and Part B child counts, the National Deaf-Blind Child Count data is collected for children whose disability is solely deaf-blindness, as well as those who are identified with deaf-blindness and have additional disabilities. This is a critical distinction given that nearly 87% of the children and youth on the National Deaf-Blind Child Count have one or more additional disabilities. Consequently, most children who are deaf-blind or have deaf-blind intervention needs are not identified as such on OSEP’s IDEA Part C and Part B child counts.

Between December 1, 2017 and December 1, 2018, state and multi-state deaf-blind projects reported 11,081 children and youth were eligible to receive services. 10,638 children and youth were eligible to receive services from deaf-blind projects on December 1, 2018. Of these, 9,904 were both eligible to receive deaf-blind project services and were being served through either Part C or Part B of IDEA. Therefore, a total of 9,904 children and youth are included on the December 1, 2018 Deaf-Blind Child Count.

Across the United States, 647 infants (birth-2) and 9,189 children and young adults (3-21) were identified and reported as deaf-blind by the state and multi-state deaf-blind projects on the December 1, 2018 Deaf-Blind Child Count. An additional 68 students were reported by those projects, who by their respective state’s legislation or regulation, continue to provide services through the end of the school year in which the student turns 22 years of age. These individuals make up the total of 9,904 infants, children, and young adults identified as deaf-blind by the state and multi-state deaf-blind projects. This figure represents a slight increase from the previous year.

In contrast, the U.S. Department of Education (2018a) reports that 1,493 students (3-21) were identified as deaf-blind on OSEP’s IDEA Part B "Snapshot" Child Count. Due to the non-categorical nature of Part C, no infants or toddlers are reported as deaf-blind as they are all reported as developmentally delayed or at-risk by their state Part C lead agencies (2018b). This discrepancy of nearly 85% between the IDEA count of children and youth who are deaf-blind and the National Deaf-Blind Child Count is significant. State and multi-state deaf-blind project directors consistently indicate that most Part C lead agencies and state education agencies report their children and students with deaf-blindness as being developmentally delayed, multiply disabled, and/or visually impaired or hearing impaired, rather than identifying them as deaf-blind. Concerns about the under-identification of deaf-blindness and its resulting unique intervention requirements have been a consistent problem and one that often results in a lack of or delay in receiving appropriate intervention and instruction critical to children’s early development (Herbster, 2015; Muller, 2006; Purvis & Schalock, 2014). The opportunity for early identification, intervention, and provision of instructional services aimed at the unique needs of young children and students who are deaf-blind is a critical component that should not be lost.

In reviewing the child count data submitted over the years, it is notable that children who are deaf-blind are highly diverse. Clearly, children who are deaf-blind are as varied as the number reported, and the nature and extent of deaf-blindness in children is often misunderstood (Malloy & Killoran, 2007; McCormick, 2015; Schalock, 2018). These children represent one of the lowest incidence yet most diverse group of learners receiving early intervention and special education services (Muller, 2006). They are an extremely heterogeneous group whose sensory losses are often accompanied by additional physical or cognitive disabilities, complex medical needs, and/or behavior challenges. The level of complexity in the needs faced by this population requires continued evolution and adaptation in national, state, and local systems to provide needed services effectively.