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.

Data Elements in the National Deaf-Blind Child Count

Throughout the history of the child count, NCDB and its predecessors have continuously revised the child count language and reporting elements to a) remain current with IDEA Section 618 Part C and Part B data requirements, b) ease the data collection burden of the projects, and c) increase process and cost efficiencies.

Current data elements target both IDEA Section 618 requirements and the collection of information to guide state-specific and national technical assistance. Existing data elements have been broken out into specific Part B and Part C elements using Section 618 language. Reported data elements that are consistent with the IDEA mandated child counts include:

  • Race/Ethnicity
  • Part B and C Category Codes
  • Early Intervention Setting (Birth through 2)
  • Educational Setting (3-5 and 6-21)
  • Participation in Statewide Assessments
  • Part C Exiting Status (Birth through 2)
  • Part B Exiting Status (3-21)

Data elements have also been included to assist in developing state and national technical assistance initiatives (e.g., collection of demographic and needs assessment information). These include:

  • Gender
  • Etiology
  • Documented Vision Loss
  • Cortical Vision Impairment
  • Documented Hearing Loss
  • Central Auditory Processing Disorder
  • Auditory Neuropathy
  • Cochlear Implants
  • Other Impairments or Conditions
  • Living Setting
  • Intervener Services
  • Use of Corrective Lenses, Listening Devices, and/or Assistive Technology

Considerations for the Reader

When reading the information that follows, the reader should note that:

  • Although the IDEA definition is used as the common definition of deaf-blindness, each state or multi-state deaf-blind project has the discretion of establishing criteria for their own project services. This definition was modified for birth-2 to reflect Part C Early Intervention program services and infant-toddler outcomes.
  • The National Deaf-Blind Child Count is collected in a timeline similar to IDEA Section 618 data requirements. A point-in-time “snap shot” is used to reflect those infants, young children, and students identified and eligible for services from state and multi-state deaf-blind projects on December 1 of each year. Thus, in many instances, projects serve more infants, young children, and students over the course of the year than are reported on December 1.
  • Where cross-over exists, the language and reporting elements used in the National Deaf-Blind Child Count are consistent with those found in Section 618 of IDEA.
  • The National Deaf-Blind Child Count uses the IDEA Exiting data category differently than it is used in the Part B Children with Disabilities (IDEA) Exiting Special Education data collection. Exiting data is reported for ages 3-21 using these category codes on the Deaf-Blind Child Count. The IDEA Part B Exiting Special Education collection only collects data on ages 14-21.
  • The National Deaf-Blind Child Count data presented are based on aggregate data reported by each state and multi-state deaf-blind project. While the aggregated counts provide a national perspective, there is substantial variability in the individual state project data reports.

Contact Information

Questions may be directed to Robbin Bull at robbin.bull@hknc.org

References

Herbster, H. (2015). Special education eligibility and the category of deafblindness:Examining the perspectives of case coordinators. [Dissertation].

U.S. Department of Education. (2018a). IDEA Part C Child Count and Settings. [Data file].

U.S. Department of Education. (2018b). IDEA Part B child count and educational environments. [Data file].

Malloy, P., & Killoran, J. (2007). Children who are deaf-blind. Practice Perspectives - Highlighting Information on Deaf-Blindness. Monmouth, OR: National Consortium on Deaf-Blindness (NCDB), Teaching Research Institute, Western Oregon University.

McCormick, M. (2015). New to deafblindness? Five tips for administrators. TX SENSEABILITIES, Spring/Summer 2015, 10-13.

Muller, E. (2006). Deaf-blind child counts: Issues and challenges. Alexandria, VA: Project Forum at NASDSE. 

Purvis, B. & Schalock, M.D. (2014). Using evidence-based strategies and technical assistance to improve identification of infants and toddlers with combined vision and hearing loss. Visual Impairment and Deafblind Education Quarterly, 59(5), 20-24.

Schalock, M.D. (2018). The 2017 National Child Count of Children and Youth who are Deaf-Blind. Monmouth, OR: National Center on Deaf-Blindness, The Research Institute, Western Oregon University.