About Deaf-Blindness

There are approximately roughly 45,000 to 50,000 individuals in the U.S who are deaf-blind. [1] According to the 2018 National Deaf-Blind Child Count, over 11,000 are children under the age of 21. [2]

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 Center on Deaf-Blindness observes that the “key feature of deaf-blindness is that the combination of losses limits access to auditory and visual information.” [3] 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.

Resource Section

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

FAQs about deaf-blindness.
http://www.aadb.org/FAQ/faq_DeafBlindness.html

What is deaf blindness?
https://nationaldb.org/library/list/3

How many children are we talking about?
https://nationaldb.org/library/list/7

Information about deaf-blindness. Personal insights and information from an individual with deaf-blindness.
http://www.deafblind.com/info-db.html

How do deaf-blind people communicate?
 http://www.aadb.org/factsheets/db_communications.html

The Deafblind Manual Alphabet.
http://www.deafblind.com/card.html

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.
https://nationaldb.org/library

Finding Services in Your State

State deaf-blind projects.
Every state has one. Find yours at the National Center on Deaf-Blindness.
https://nationaldb.org/members/list?type=State+Project

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. 
http://www.aadb.org/resources/resources.html

The Experts on Deaf-Blindness

National Center on Deaf-Blindness (NCDB)
http://www.nationaldb.org

Helen Keller National Center for Deaf-Blind Youths and Adults (HKNC)
http://www.hknc.org

American Association of the Deaf-Blind (AADB)
http://www.aadb.org

Deafblind International
http://www.deafblindinternational.org/

In Children’s Early Years

How to engage your child in the early years.
https://www.nationaldb.org/for-families/learning-resources/family-topics/engage-your-child-early-years/

Early interactions with children who are deaf-blind.
https://nationaldb.org/library/page/2062
Also available in Spanish and in Indonesian.

Communication at home and in the community.
Helpful strategies and suggestions from parents and families with a child who is deaf-blind.
http://documents.nationaldb.org/products/parent99.pdf

Communication fact sheets for parents.
https://nationaldb.org/library/list/14

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.
https://nationaldb.org/library/page/1930

School Matters

Considerations when teaching students who are deaf-blind (NETAC Teacher Tipsheet).
https://webapps.ou.edu/ods/cds/MADTools/print/pdf/tpshtdb.pdf

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.
https://nationaldb.org/library/list/38

Transition to Adulthood for Students Who Are Deaf-Blind

Transition toolkit: Enhancing self-determination for young adults who are deaf-blind.
https://nationaldb.org/library/page/2297

More on transition planning for students with deaf-blindness.
Lots to pick from here, on the Transition landing page.
https://nationaldb.org/library/list/59

And more on self-determination.
https://nationaldb.org/library/list/66

For Administrators

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.
https://nationaldb.org/childcount

DB 101.
Working with students who are deaf-blind? Need to train staff and paraprofessionals? Consult these two sections at the National Center on Deaf-Blindness for a wealth of information for both teachers and administrators:

Educational Practices
https://www.nationaldb.org/info-center/educational-practices/

Interveners and Qualified Personnel
https://www.nationaldb.org/national-initiatives/iqp/

Resources in Spanish

Visit the National Center on Deaf-Blindness, where you’ll find a wealth of information in Spanish on deaf-blindness.
https://www.nationaldb.org/for-families/learning-resources/recursos-para-familias/

English/Spanish Specialized Deaf-Blind Glossary/Espanol Glosario Especializado En Sordoceguera.
https://documents.nationaldb.org/products/esgloss.pdf

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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 Center on Deaf-Blindness. (2019, December). The 2018 national child count of children and youth who are deaf-blind. Retrieved September 10, 2020, from:
https://www.nationaldb.org/media/doc/2018_National_Deaf-Blind_Child_Count_Report_FINAL_a.pdf

3 | National Center on Deaf-Blindness. (2007, November). Children who are deaf-blind. Retrieved September 10, 2020, from: https://www.nationaldb.org/media/doc/Children_Who_Are_Deaf-Blind_a.pdf

 

See fact sheets on other disabilities