Accessible Test

The National Registry for Children with Visual Impairments,

Birth to Three Years

(Continued)
Purpose

To establish a national registry of young children, birth to 36 months, by working with public and private agencies to collect standardized epidemiological and demographic data on young children with visual impairments. All data are coded to ensure confidentiality of children and families. Collaborating agencies will forward the data to a national registry center at the American Printing House for the Blind in Louisville, Kentucky.

Project Staff

Charles "Burt" Boyer, Project Coordinator

Deborah Hatton, Research Scientist
Conrad Reynolds, Technical Consultant

Erica Rucker, Research Assistant

Background

In 1995, the Model Registry of Early Childhood Visual Impairment Consortium Group (MRECVICG) was established to address the issue of data collection to ensure its consistent and systematic completion. The mission of MRECVICG was to develop and implement a model registry of birth to 3-year-old blind and visually impaired children, and to demonstrate the feasibility of a registry that could be replicated on a national basis. The MERCVICG was a high-powered committee representative of agencies serving children with visual impairments, departments of education, institutions of higher education, and the medical community.

In late 1998, four members of the MRECVICG developed a proposal requesting that the American Printing House for the Blind assume the project as a national project. Tuck Tinsley, Ed.D., President of APH, presented the proposal to the Board of Trustees and in June 1999, and it was officially announced that APH would assume the project. In August 2000, an Early Childhood Project Leader was employed in the Research Department by APH, and APH agreed to begin collecting data in January 2001. The Board is to be commended for approving the use of endowment funds to support this project.
Benefits of the project include:

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  Establish a centralized registry of children with visual impairments from birth to 3 years
  
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  Develop a database that will more clearly define the population of infants/toddlers who are blind and visually impaired as none presently exists.
  
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  Provide APH with a database to identify early trends in etiologies and demographics which will help give data and direction to APH for future research and product/materials development
  
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  Allow for the development of outcome research and stimulate studies by other professionals, e.g. education, medical, sociological.
  
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  Assist personnel preparation programs to be more responsive to the needs of the field based upon numbers of blind and visually impaired children, changing etiologies and geographical distribution of children.
  
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  Provide a natural transition from the centralized registry for children with visual impairments, birth to 3 years, to the Federal Quota Program.
  
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  Assist with program development, assessment/evaluation, pre-service/in-service training, funding, and advocacy.
  

The project coordinator continued efforts to add additional participants to the project. When the project was taken over by APH in 2001, there were eight states participating. Presently there are 26 states participating, and another five states have been trained to get involved. Most states have several agencies providing early intervention services to blind and visually impaired children, from birth to 3 years. With this in mind, there are presently 43 agencies participating. A total of 2,155 surveys were entered into the database as of December 31, 2004. Approximately 3,300 surveys are now in the database. An analysis was done on the 2,155 surveys, and a PowerPoint presentation developed. The project coordinator presented the data at several conferences during 2007.

In 2008, the project coordinator continued to encourage more states and agencies to participate in the project. The Project coordinator participated in several conferences and seminars to promote the project. An Advisory Committee was established to review the present status of the Babies Count Project, and to recommend strategies to improve the project in the future. Advisory Committee members included: Dr. Deborah Hatton, Tom Miller, Dr. Lee Robinson, Gail Cavello, Chris Tompkins, Mindy Ely, and Janie Blome. Some of the recommendations included the following:

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  To have data analyzed on an annual basis
  
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  To identify 12 to 17 items from the survey to be analyzed annually for each participating agency
  
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  To upgrade/revise the present database
  
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  To have a place on the APH Website just for Babies Count
  

The project coordinator for Babies Count did not complete the above recommendations from the Advisory Committee. Several new states joined Babies Count during FY 2008: Kansas, Texas, Montana, and Nevada. Interest in the project continues to be fairly high. Pennsylvania, Florida, and Michigan have shown a desire to get involved.

Work during FY 2009

The coordinator of Babies Count continued to work closely with states and agencies participating in the Babies Count Project. The agencies participating continued to collect and enter data into the database. Interest was shown from several states, but no new states were added during FY 2009. The following work was completed in FY 2009:

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  Twenty-two items were identified to be included in a report for each individual agency participating.
  
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  Improved entry time for surveys sent to coordinator of project
  
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  Better communication between coordinator and participating agencies was established.
  
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  Identified what materials should be part of a link on the APH Website.
  

Someone outside APH had done data entry into the database, but that individual was unable to continue working on the project. The project leader worked to identify an outside source to do this work, but efforts were not successful.

Work planned for FY 2010

The Babies Count Project continues to be important to the field, and to APH. During FY 2010, efforts will be made to re-define APH’s commitment to the project. This will include (1) identification of how best to analyze the data that is currently in the database, and (2) what data should continue to be gathered in the future. The process through which data is gathered and entered into the database will be reviewed. The electronic survey form will be reviewed and necessary changes made.