A legacy disability fact sheet from NICHCY
Updated, May 2014
In This Publication…
There are approximately roughly 45,000 to 50,000 individuals in the U.S who are deaf-blind.  According to the 2007 National Deaf-Blind Child Count, over 10,000 are children under the age of 21. 
The word “deaf-blindness” may seem as if a person cannot hear or see at all. The term actually describes a person who has some degree of loss in both vision and hearing. The amount of loss in either vision or hearing will vary from person to person.
Our nation’s special education law, the IDEA, defines “deaf-blindness” as:
…concomitant [simultaneous] 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. [§300.8(c)(2)]
The National Consortium on Deaf-Blindness observes that the “key feature of deaf-blindness is that the combination of losses limits access to auditory and visual information.”  This can severely limit an individual’s natural opportunities to learn and communicate with others.
Finding Help for Children with Deaf-Blindness
Children birth to age 3 | Very young children (birth up to age 3) who are deaf-blind are typically eligible for early intervention services under the Infants and Toddlers with Disabilities program of IDEA (also called Part C). These services are extremely important to children with deaf-blindness and their families, for the services are designed to address the child’s developmental and learning needs. Parents are involved in deciding what services their child and family need to address the challenges of deaf-blindness. Services are either provided free of charge to families or on a sliding cost scale based on the family’s income.
To find the early intervention program in your area, ask your pediatrician or get in touch with the pediatric unit of a nearby hospital. Say that you’re looking for a referral to early intervention or Child Find for a baby or toddler. They’ll put you in touch with a program near you.
School-age children, including preschoolers | When children with deaf-blindness reach the age of 3, they transition into special education services under Part B of IDEA. Special education services are provided free through the public school system. Even if a child with deaf-blindness is not in school yet (for example, a four-year-old), the school system is still responsible for making sure that special education and related services are available to the child.
Because deaf-blindness causes severe communication and other developmental and educational needs, it’s very important for children with deaf-blindness to receive special education and related services to address their individual needs. You can find out more about these services and how to access them by contacting the local elementary school in your area.
Rather than duplicate the excellent work of others, the Center for Parent Information and Resources (CPIR) is pleased to connect you with an array of information and assistance already available on deaf-blindness. What’s listed below is not exhaustive, but will certainly lead you to the founts of experience and knowledge that will be very helpful in addressing the challenges associated with deaf-blindness.
We’ve divided the resource section into several parts to speed you to information relevant to your concerns. Browse all the resources or jump to the type of resources you’re looking for.
- About deaf-blindness
- Finding services in your state
- The experts on deaf-blindness
- In children’s early years
- School matters
- Transition to adulthood for youth who are deaf-blind
- For administrators
- In Spanish
FAQs about deaf-blindness.
What is deaf blindness?
How many children are we talking about?
Information about deaf-blindness. Personal insights and information from an individual with deaf-blindness.
How do deaf-blind people communicate?
The Deafblind Manual Alphabet.
Find what’s out there on your topic.
Search the world’s most comprehensive collection of books, articles, proceedings, videos and other materials about deaf-blindness.
Finding Services in Your State
State deaf-blind projects.
Every state has one. Find yours at the National Center on Deaf-Blindness.
Visit the American Association of the Deaf-Blind.
AADB provides a listing of state and local organizations for deaf-blind people and also a listing of service and rehabilitation agencies around the country.
The Experts on Deaf-Blindness
National Consortium on Deaf-Blindness (NCDB)
Helen Keller National Center for Deaf-Blind Youths and Adults (HKNC)
American Association of the Deaf-Blind (AADB)
In Children’s Early Years
For new parents: You and your baby.
Communication at home and in the community.
Helpful strategies and suggestions from parents and families with a child who is deaf-blind.
Communication fact sheets for parents.
Talking the language of the hands to the hands.
This publication examines the importance of hands for the person who is deafblind, reviews hand development, and identifies specific teaching skills that facilitate hand development and expressiveness in persons who are deafblind. Also available in Danish, Swedish, German, and Spanish, at the link below.
Considerations when teaching students who are deaf-blind (NETAC Teacher Tipsheet).
Deaf-blindness: Educational service guidelines.
This best practice guide is designed to help states, districts, schools and practitioners in supporting students who are deafblind and their families. Available in English and Spanish from the Perkins School for the Blind.
IEP development | Lots of resources in English and Spanish!
Enter at the link below, and select from a rich list of articles in English and Spanish related to the IEP.
Transition to Adulthood for Students Who Are Deaf-Blind
Transition toolkit: Enhancing self-determination for young adults who are deaf-blind.
More on transition planning for students with deaf-blindness.
Lots to pick from here, on the Transition landing page.
And more on self-determination.
National Deaf-Blind Child Count Maps.
The interactive map at the link below can help you find child counts of children who are deaf-blind in every state. You can also break the data down into subcategories, including: age , race/ethnicity, settings in which children are served, living settings, and participation in statewide assessments.
Working with students who are deaf-blind? Need to train staff and paraprofessionals? Here’s a entire page of brief tutorials. Also available in Spanish.
Resources in Spanish
Visit the National Center on Deaf-Blindness, where you’ll find a wealth of information in Spanish on deaf-blindness.
English/Spanish Specialized Deaf-Blind Glossary/Espanol Glosario Especializado En Sordoceguera.
1 | Gallaudet University Library. (2010). American deaf-blind population. Retrieved October 28, 2011, from: http://libguides.gallaudet.edu/content.php?pid=119476&sid=1029203
2 | National Consortium on Deaf-Blindness. (2008, September). The 2007 national child count of children and youth who are deaf-blind. Retrieved February 19, 2009, from: http://www.nationaldb.org/documents/products/2007-Census-Tables.pdf
3 | National Consortium on Deaf-Blindness. (2007, November). Children who are deaf-blind. Retrieved February 19, 2009, from: http://www.nationaldb.org/documents/products/population.pdf