Why a National Child Count
Why a National Child Count
The National Consortium on Deaf-Blindness (NCDB), and its predecessors including the National Technical Assistance Consortium for Children and Youth who are Deaf-Blind (NTAC) and the Teaching Research Assistance to Children Experiencing Sensory Impairments (TRACES) projects, have been conducting an annual National Child Count of Children and Youth who are Deaf-Blind (Birth -21) since 1986. This national child count, commonly referred to as the "Census", is conducted on December 1st of each year to supplement OSEP's federal Child Count, which includes children as deaf-blind when deaf-blindness represents their only disability. Since the majority of children with deaf-blindness do have additional disabilities they are not included in the OSEP Child Count as deaf-blind (Mueller, 2006). In contrast to OSEP's December 1 count, the Census data are collected for children with deaf-blindness in isolation, as well as those with additional disabilities. The Census represents the first, longest running, and most comprehensive registry of infants, young children, and students who are deaf-blind.
Through the years, the collection of deaf-blind specific child count data and its ensuing analysis has provided valuable information. It has assisted state and national deaf-blind technical assistance projects in the design of their services, as well as in meeting the requirements of their various funding agencies. It has also been used to: 1) identify national and state technical assistance needs and activities for children and youth who are deaf-blind, their families, and the service providers and systems that serve them; 2) identify research needs; 3) develop personnel preparation programs; and, 4) target national and state product development and dissemination activities.
The Census has grown throughout the years and now represents a comprehensive data set including:
- The specific number and ages of the infants, young children, and students (birth through 21) who are deaf-blind throughout the country
- The primary etiology of their deaf-blindness
- Any additional disabilities they may have
- The type and degree of their hearing and vision loss
- Their ethnicity
- Their IDEA classification, special education status and placement
- Their living setting
In 1992, Baldwin suggested that before beginning a detailed discussion of the numbers and descriptors of those who are deaf-blind, it is important to ask:
Why do we want to know this?"
The answer to this question remains as important today as it was when it was first asked. The continuance of the Census must not be thought of as simply the satiation of a grant or contract requirement, which once completed is shelved until the following year. In contrast, the foremost reason for continuation of the Census remains that posed by Baldwin in 1992:
"The real reason to gather all possible data on each and every person who is deaf-blind is to ensure that these people are getting the highest quality services that the professions have developed."
With this as the purpose, the discussions around collecting, and using the information collected, becomes extremely important and focused. NTAC, (now NCDB, the National Consortium on Deaf-Blindness) proposes that the Census be used to assist in answering the following:
- Who are the children and youth with deaf-blindness throughout the country, how many are there and what is the relationship of the Census to the IDEA Part B and Part C annual December 1 Child Counts?
- What is the extent of the vision and hearing losses of those reported on the Census and what additional disabilities do they manifest?
- Where are those reported receiving services and how does this impact technical assistance and training needs?
- Where are they living and how does this impact technical assistance and training needs?
As an initial attempt to answer these questions, NTAC conducted a comprehensive review and synthesis of Census information across 8 years, from 1998-2005. The information presented represents an ongoing data collection partnership between the State/Multi-State Deaf-Blind Projects across the country and NTAC.