NICHCY Disability Fact Sheet 16 (FS16)
Updated March 2012, Links checked April 2013
In This Publication…
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 2007 National Deaf-Blind Child Count, over 10,000 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 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.” [3] This can severely limit an individual’s natural opportunities to learn and communicate with others.
Finding Help for Children with Deaf-Blindness
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, get in touch with the pediatric unit of a nearby hospital, or take a look at NICHCY’s State Resource Sheet for your state. We list the central contact for the early intervention system in every state. This office can put you in touch with a program near you.
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, NICHCY 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
- 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
About deaf-blindness
FAQs about deaf-blindness.
http://www.aadb.org/FAQ/faq_DeafBlindness.html
Overview of deaf-blindness.
http://www.nationaldb.org/NCDBProducts.php?prodID=38
Children who are deaf-blind.
http://www.nationaldb.org/documents/products/population.pdf
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.
http://www.nationaldb.org/ISLibrary.php
Finding Services in Your State
State deaf-blind projects.
Every state has one. Find yours at the National Consortium on Deaf-Blindness.
http://www.nationaldb.org/ppStateDBProjects.php
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 Consortium 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
Early interactions with children who are deaf-blind.
http://www.nationaldb.org/NCDBProducts.php?prodID=34
Communication at home and in the community.
Helpful strategies and suggestions from parents and families with a child who is deaf-blind.
http://www.nationaldb.org/documents/products/parent99.pdf
Communication factsheets for parents.
http://www.nationaldb.org/documents/products/communication-a.pdf
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.
http://www.nationaldb.org/NCDBProducts.php?prodID=47
The intervener in early intervention and educational settings for children with deaf-blindness.
http://www.nationaldb.org/documents/products/intervener.pdf
School Matters
Considerations when teaching students who are deaf-blind (NETAC Teacher Tipsheet).
http://wwwcms.hutchcc.edu/uploadedFiles/Student_Resources/Disability_Services/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. Copies may be purchased at www.perkins.org/publications for $25.00 a copy.
Teacher packet.
A selection of articles, fact sheets, bibliographies and state resources organized to provide information for the teacher who is new to the deaf-blind student.
http://www.nationaldb.org/NCDBProducts.php?prodID=48
Transition to Adulthood for Students Who Are Deaf-Blind
Transition planning for students with deaf-blindness.
http://nationaldb.org/documents/products/transition01-09.pdf
Self-determination for students who are deaf-blind.
http://www.nationaldb.org/documents/products/self-determ.pdf
National Transition Follow-Up Study of Youth Identified as Deafblind: Parent Perspectives.
http://www.nationaldb.org/documents/products/transition.PDF
For Administrators
Deaf-Blind Child Counts: Issues and challenges.
http://www.projectforum.org/docs/Deaf-BlindChildCounts-IssuesandChallenges.pdf
National Deaf-Blind Child Counts.
The National Deaf-Blind Child Count, reported by each state’s Project for Children and Youth who are Deaf-Blind, is collected annually on December 1 of each year and is a “snapshot” of the characteristics, educational settings and living arrangements of children and youth who fit the state project’s definition of being deaf-blind as of that date. The Annual Reports from 2001 through 2006 are available in PDF.
http://www.nationaldb.org/TAChildCount.php#Summaries
Psychological evaluation of children who are deaf-blind.
This fact sheet provides answers to frequently asked questions about psychological evaluations for infants, children, and adults who are deaf-blind.
http://www.nationaldb.org/NCDBProducts.php?prodID=40
Recommendations on the training of interveners for students who are deaf-blind.
http://www.dblink.org/pdf/intervener-train.pdf
Service delivery in rural areas.
Here’s a manual or blueprint for rural agencies to develop deaf-blind services in their local areas.
http://resources.pepnet.org/files/107_2009_5_18_18_08_PM.pdf
Resources in Spanish
Visit the National Consortium on Deaf-Blindness, where you’ll find many fact sheets and other resources available in Spanish.
http://www.nationaldb.org/ISProductos.php
English/Spanish Specialized Deaf-Blind Glossary/Espanol Glosario Especializado En Sordoceguera.
http://www.nationaldb.org/documents/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 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
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