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Initiative Background and Data Facts

Family Engagement

Initiative Background and Data Facts

Family Engagement

This page was last updated on Jul 20, 2016 at 9:00 am


Initiative Background

Research focused on families tells us that when parents are involved in their child’s education good things can and do happen. Families want the best for their children and want to trust that service providers and educators have the information and skills to help them learn and grow. 

NCDB, state deaf-blind projects throughout the country, and leading national family organizations (the National Family Association for Deaf-Blind and the CHARGE Syndrome Foundation), partner to support parents of children who are deaf-blind and assist them in acquiring information, resources, and advocacy and leadership skills.  

Data Facts 

Children who are deaf-blind are widely dispersed across the United States and within states. The number in a given state is very small, ranging from 17 in Alaska to 938 in California. This leads to two primary challenges for families. First, they are often extremely isolated. It is rare for a family of a child with deaf-blindness to know of another family of a child with deaf-blindness in their community. They don’t have easy access to families in similar circumstances.

Second, because it is so rare, service providers typically have no or limited experience with children who are deaf-blind. This puts families in the very stressful position of needing to teach educators and other service providers about deaf-blindness and the unique needs of their child. This task is never-ending as children move from system to system (e.g., early intervention to pre-school) and from provider to provider throughout their educational lives.

The Family Engagement Initiative seeks to help families of children of different ages acquire the knowledge and skills they need to successfully advocate for their children. Ages of children on the current National Child Count are:

  • Early Intervention (564 infants and toddlers) 
  • Pre-school (1,181 children)
  • Elementary school (3,138 children)
  • Middle and high school (3,178 youth)
  • After high school (1,574)) 

Within those age groups, children are educated in a variety of settings:

  • Home (9%) 
  • Regular education classrooms (60%) 
  • Separate classrooms and separate schools (22%)
  • Residential facilities (4%)
  • Hospitals and nursing homes (5%)

Each setting brings its own unique challenges. Families need to be able to understand what each provides and determine the best match for their child.


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