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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:

The disability of deaf-blindness presents unique challenges to families, teachers, and caregivers, who must make sure that the person who is deaf-blind has access to the world beyond the limited reach of his or her eyes, ears, and fingertips. The people in the environment of children or adults who are deaf-blind must seek to include them—moment-by-moment—in the flow of life and in the physical environments that surround them.

- Barbara Miles

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

Learn more about the causes of deaf-blindness →

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 2018 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

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.

School building with flag flying in front.

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.