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Spring 2000 Table of Contents
Versión Español de este artículo (Spanish Version)

By Nancy O’Donnell, Coordinator of the National Registry

Have you ever wondered how many deafblind people there are in the United States? For many years, there has been no way to answer this question for the "over 21" population other than educated guesses. Estimates have varied greatly. For example, in 1996, only 437 individuals were reported to be deaf-blind to the Rehabilitation Services Administration. On the other end of the spectrum, Schein & Delk determined that 356 people per 100,000 experience a combination of vision and hearing loss. In an effort to gain a more accurate count and an understanding of the needs of this population, the federal government recently authorized HKNC to maintain a national registry of those who are deaf-blind. We are very excited about this project!

Getting Started

Over the years, HKNC has collected information on the clients we have served through our programs at headquarters, in the field, through our affiliated agencies and from other agencies or interested individuals. This information, however, has not been available on a national basis. During the summer of 1999, we enthusiastically began the process of compiling this information into a national database. Beginning with records stored in our archives, we entered data on thousands of individuals. These records include the cause of their deaf-blindness, severity of hearing and vision losses, methods of communication, residential situations, employment status and training needs. We are currently working with a programmer to combine this information into one workable database.

When this database is operational, we will have a better understanding of the numbers of people with various syndromes that cause deaf-blindness, such as Usher, CHARGE and congenital rubella. We will be able to determine the most commonly reported methods of communication, the numbers of people using hearing aids or who have had cochlear implants, services that are available and services that are needed. All of this information will be accessible in national, state, and local profiles.

This type of demographic information is critical to agencies planning adult services for this population, to university programs preparing teachers and interpreters to work with those who are deaf-blind, to agencies providing residential and employment services, and to federal and state governments as they develop initiatives and priorities for funding.

The registry will not replace the current comprehensive system of collecting census information for children aged birth to 21, compiled by Teaching Research in cooperation with the State and Multi-State Deaf-Blind Projects. However, we will include anyone who is deaf-blind, of any age, on our registry. If you would like to register yourself or obtain an application for someone you know, you can request a copy of the registry form from Nancy O’Donnell at 111 Middle Neck Road, Sands Point, NY, 11050. Copies of the form are also available at our website: Special Projects – Registry.