This report is the 34th edition of the annual National Deaf-Blind Child Count, the first and longest running count 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 state deaf-blind projects throughout the country, including multi-state projects and projects funded in the Pacific Trust territories, the Virgin Islands, and Puerto Rico.
Each year, the state deaf-blind projects collect data on children in their states (birth through 21) who are deaf-blind and submit it to NCDB. Data is collected using a timeline aligned with one the U.S. Department of Education’s Office of Special Education Programs (OSEP) uses to collect data on children (birth through 21) receiving special education services. For the OSEP data collection, each state designates a date between October 1st and December 1st on which they capture a point-in-time “snap shot” of children who are eligible for IDEA Part C or Part B services (U.S. Department of Education, 2020). Similarly, state deaf-blind projects use a point-in-time “snap shot” date of December 1st to capture the number of children eligible for their state deaf-blind project services. NCDB provides technical assistance to the projects to help them conduct their counts and compiles the data into this national report.
The National Deaf-Blind Child Count has been designed, implemented, and revised to serve as a common vehicle to meet federal grant requirements for the state deaf-blind projects and NCDB. Consistent with priorities under which NCDB and the projects are funded, it is used to help identify state and national technical assistance needs for children who are deaf-blind, their families, and the providers and systems that serve them.
The count also serves as an important point of comparison to OSEP’s IDEA Part B child count, which categorizes children as having deaf-blindness only when it is their single disability. In contrast, the National Deaf-Blind Child Count includes children whose disability is solely deaf-blindness, as well as those with additional disabilities. This is a critical distinction given that 87% of the children on the National Deaf-Blind Child Count have one or more additional disabilities. Consequently, most children with deaf-blindness are not identified as such on the Part B child count.
In 2019, state deaf-blind projects reported that 11,335 children were eligible to receive services from their projects at some point between December 2, 2018 and December 1, 2019, and 10,716 were eligible for services on December 1, 2019. Of these, 10,627 were eligible to receive deaf-blind project services and were being served through either Part C or Part B of IDEA. This is the official National Deaf-Blind Child Count and data for these children are included in all sections of this report, except for “Exiting Information,” which incorporates data from the cumulative total of 11,335 children served at any time during the year.
The 10,627 total includes:
- 658 infants and toddlers (birth-2)
- 9,867 children and youth (3-21)
- 65 (age 22) from states that provide services through the end of the school year in which students turn 22 years of age
- 37 (ages 23-26) from Michigan, which allows for the provision of services up to age 26 for students who meet state administrative rules eligibility criteria
In contrast to the 9,867 children aged 3 through 21 identified on the National Deaf-Blind Child Count, the U.S. Department of Education (2019a) reported that only 1,606 students in that age range had deaf-blindness. [Note: Due to the non-categorical nature of Part C, no infants or toddlers are reported as deaf-blind. Instead, they are reported as developmentally delayed or at-risk (2019b).]
The discrepancy between OSEP’s IDEA Part B child count and the National Deaf-Blind Child Count is significant. State deaf-blind projects consistently demonstrate through their reporting that most state education agencies report students with deaf-blindness as developmentally delayed, multiply disabled, and/or visually impaired or hearing impaired, rather than deaf-blind. Concerns about the under-identification of deaf-blindness have been a consistent problem that often results in a lack of or delay in receiving appropriate intervention and instruction critical to children’s early development and learning (Herbster, 2015; Muller, 2006; Purvis & Schalock, 2014).
Overview of Deaf-Blindness
Deaf-blindness is defined in IDEA regulations as:
Concomitant hearing and visual impairments, the combination of which causes such severe communication and other developmental and educational needs that they cannot be accommodated in special education programs solely for children with deafness or children with blindness.
This is a common definition of deaf-blindness used by state deaf-blind projects, but the projects also have the discretion to establish additional criteria for their services.
The population of children who are deaf-blind is one of the lowest incidence yet most diverse group of learners receiving early intervention and special education services (Muller, 2006). Their sensory losses are often accompanied by additional physical or cognitive disabilities, complex medical needs, and/or behavior challenges. Children are as varied as the number reported, and the nature and extent of deaf-blindness is often misunderstood (National Consortium on Deaf-Blindness, 2007; McCormick, 2015; National Center on Deaf-Blindness, 2018). The complexity of needs associated with this disability requires continued evolution and adaptation of local, state, and national services.
Throughout the history of the National Deaf-Blind Child Count, NCDB and its predecessors have continuously revised the language and reporting elements to a) remain current with IDEA Section 618 Part B and Part C data requirements, b) ease the data collection burden on state deaf-blind projects, and c) increase process and cost efficiencies.
Current data elements target both IDEA Section 618 requirements and information to guide state-specific and national technical assistance. Data elements aligned with IDEA Part B and Part C child counts include:
- Part B and C Category Codes
- Early Intervention Setting (Birth-2)
- Educational Setting (3-5 and 6-21)
- Participation in Statewide Assessments
- Part C Exiting Status (Birth-2)
- Part B Exiting Status (3-21)
Additional data elements collected to inform state and national technical assistance services and initiatives include:
- Documented Vision Loss
- Cortical Visual 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
Data Collection during the COVID-19 Pandemic
In 2020, many state deaf-blind projects found themselves abruptly removed from their work locations due to COVID-19, which limited their access to data systems and files. This created challenges for finalizing December 1, 2019 child count collection and reporting activities. Some projects were unable to obtain records needed to verify current details about children on their state counts. Thus, the National Deaf-Blind Child Count includes 2018 data for some children that was not confirmed in 2019.