Deaf-Blindness Overview
Deaf-blindness is a rare condition in which an individual has combined hearing and vision loss, thus limiting access to both auditory and visual information.
This page provides an overview and links to additional resources on the following aspects of deaf-blindness for children and youth:
For a quick look at what deaf-blindness is, how many children are affected, and how children who are deaf-blind learn and communicate, see
What is Deaf-Blindness?
Excerpted from Overview on Deaf-Blindness by Barbara Miles
It may seem that deaf-blindness refers to a total inability to see or hear. However, in reality deaf-blindness is a condition in which the combination of hearing and visual losses in children and youth cause “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" [34 CFR 300.8(c)(2)] or multiple disabilities. Children who are called deaf-blind are singled out educationally because impairments of sight and hearing require thoughtful and unique educational approaches in order to ensure that children with this disability have the opportunity to reach their full potential.
A person who is deaf-blind has a unique experience of the world. For people who can see and hear, the world extends outward as far as his or her eyes and ears can reach. For the young child who is deaf-blind, the world is initially much narrower. If the child is profoundly deaf and totally blind, his or her experience of the world extends only as far as the fingertips can reach. Such children are effectively alone if no one is touching them. Their concepts of the world depend upon what or whom they have had the opportunity to physically contact.
If a child who is deaf-blind has some usable vision and/or hearing, as many do, her or his world will be enlarged. Many children called deaf-blind have enough vision to be able to move about in their environments, recognize familiar people, see sign language at close distances, and perhaps read large print. Others have sufficient hearing to recognize familiar sounds, understand some speech, or develop speech themselves. The range of sensory impairments included in the term “deaf-blindness” is great.
Profiles
We hope you enjoy the following profiles of eight children who are deaf-blind (be sure to click through all the slides!). Thanks to all the kids and families who shared their photos and stories.
Causes of Deaf-Blindness
There are many causes of deaf-blindness. Those that are present or occur around the time a child is born include prematurity, childbirth complications, and numerous congenital syndromes, many of which are quite rare. Deaf-blindness may also occur later in childhood or during adulthood due to causes such as meningitis, brain injury, or inherited conditions.
It is not uncommon for the same conditions that cause deaf-blindness to also lead to additional cognitive, physical, or other disabilities and health care needs.
Percentage of Children who have Additional Disabilities
Additional Disabilities | % of Children |
---|---|
Cognitive | 64 |
Physical | 58 |
Complex health care needs | 51 |
Behavioral | 9 |
Other | 19 |
One or more additional disabilities | 87 |
Most Common Causes
The most common causes of deaf-blindness in children and youth in the U.S. are:
Complications of Prematurity
Hereditary Syndromes/Disorders
Examples:
- CHARGE Syndrome
- Usher syndrome
- Down syndrome (Trisomy 21 syndrome)
Prenatal complications
Examples:
- Cytomegalovirus
- Hydrocephaly
- Microcephaly
Postnatal complications
Examples:
- Asphyxia
- Severe Head Injury
- Meningitis
Vision and Hearing
The type and severity of vision and hearing loss differ from person to person. The tables below show the percentages of children and youth with each of the types of vision and hearing loss reported in the 2019 National Deaf-Blind Child Count.
Type of Vision Loss | % of Children |
---|---|
Totally blind or light perception only | 10 |
Legally blind | 23 |
Low vision | 33 |
Functional vision loss | 23 |
Progressive vision loss | 4 |
Further testing needed | 7 |
28% have cortical vision impairment
Type of Hearing Loss | % of Children |
---|---|
Severe to profound loss | 31 |
Moderate to moderately severe loss | 34 |
Mild loss | 14 |
Functional hearing loss | 12 |
Progressive loss | 1 |
Auditory neuropathy | 6 |
Further testing needed | 8 |
12% have cochlear implants
Learn More
Information About Hearing Loss
Hearing Loss in Children (Centers for Disease Control and Prevention)
Baby’s Hearing (Boy's Town National Research Hospital)
Auditory Neuropathy (National Institute on Deafness and Other Communication Disorders)
Auditory Neuropathy Parent Webinar, 35-minute video (Michigan Medicine)
Information About Vision Loss
Glossary of Eye Conditions (American Foundation for the Blind)
Selected Anomalies and Diseases of the Eye (Texas School for the Blind and Visually Impaired)
Types of Low Vision (Chicago Lighthouse)
Cortical Visual Impairment (Pediatric Cortical Visual Impairment Society)
CVI Now (Perkins School for the Blind)
Education
Because deaf-blindness significantly impacts a child or youth's ability to access information, communicate, and interact with other people, it has profound implications for educational services. The limited sensory channels available for learning necessitate developing a highly-individualized program for each child that addresses their interests and unique ways of learning. Sensory deficits can easily mislead even experienced educators into underestimating (or occasionally overestimating) intelligence and constructing inappropriate programs. Assessment is crucial every step of the way. (Miles, 2008)
Both the beginning and end of a child's education require special attention. It's important for children with deaf-blindness to be identified early in life when the brain is most sensitive to learning and begin receiving appropriate intervention as infants and toddlers. Once a child reaches age 14, it's time to begin careful planning and preparation for successful transition to employment, post-secondary education, and life in the community when they leave school.
It is critical that families and educators have access to training and support regarding the assessment and education of infants, children, and youth who are deaf-blind. Each state has a federally-funded deaf-blind project that provides information and assistance.
Learn More
![School building with flag flying in front.](/media/img/School.jpg)
References
Miles, B. (rev. 2008). Overview on deaf-blindness. DB-LINK: The National Information Clearinghouse on Children Who Are Deaf-Blind.
National Consortium on Deaf-Blindness. (2007). Children who are deaf-blind.
National Center on Deaf-Blindness. (2019). 2018 national child count of children and youth who are deaf-blind report.