DEFINITION
Our nation’s special education law, the Individuals with Disabilities Act (IDEA) defines deaf-blindness as…
“concomitant 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.”
[34 Code of Federal Regulations§300.8(c), (2)]
OTHER DEFINITIONS
Although the term deaf-blind implies a complete absence of hearing and sight, in reality, it refers to children with varying degrees of vision and hearing losses. The type and severity differ from child to child. The key feature of deaf-blindness is that the combination of losses limits access to auditory and visual information. The deaf-blind community includes individuals who are congenitally blind with hearing loss, congenitally deaf with vision loss and congenitally deaf-blind, as well as those who were born sighted and hearing and became deaf-blind due to aging, illness or trauma. Many children with deaf-blindness may 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 may have sufficient hearing to recognize familiar sounds, understand some speech, or develop speech themselves.
(National Center on Deaf-Blindness, NCDB, 2017)
(Helen Keller National Center for Deaf-Blind Youths and Adults, HKNC, 2019)
TYPES
The severity and combination of vision or hearing loss varies among children with deaf-blindness. There are a variety of types of visual impairments listed on the “visual impairment/blindness” page on this website. Vision loss severities include visual impairment, light perception only, legally blind, low vision, or cortical vision impairment.
Types of hearing loss include conductive, sensorineural, mixed hearing loss, and central hearing loss. More information can be found on the “deafness/hearing impairment” page on this website. Hearing loss severities can range from severe to profound hearing loss, moderate hearing loss, mild hearing loss, to normal ranges of hearing.
(NCDB, 2017)
FACTS AND STATS
There are approximately 10,000 children (age birth to 22 years) in the United States who have been classified as deaf-blind. It is estimated that the U.S. deaf-blind population totals 45,000-50,000. People age 55 and over with combined vision and hearing loss comprise the largest group of people who are deaf-blind in the United States.
More than 90% of children who are deaf-blind have one or more additional disabilities or health problems, and some may be identified as having multiple disabilities rather than deaf-blindness. In these cases, the impact of combined hearing and vision loss may not be recognized or addressed. Some common additional disabilities include a cognitive disability, physical disability, complex health care needs, or a behavioral disability.
(NCDB, 2017)
CAUSES
There are many causes that increase the risk of deaf-blindness. Hereditary syndromes and disorders may include Down syndrome (Trisomy 21), Patau’s syndrome (Trisomy 13), Usher syndrome, Norrie disease, or the presence of several concomitant malformations. Causes that are present or occur around the time a child is born include prematurity, childbirth complications, and numerous congenital infections and syndromes (including syphilis, rubella, HIV, and neonatal herpes). Fetal Alcohol Syndrome also places the fetus at risk for developing multiple abnormalities that may increase risk for deaf-blindness. Deaf-blindness may also occur later in childhood or during adulthood due to causes such as meningitis, direct trauma to the eyes and/or ears, asphyxia, brain injury, or inherited conditions.
Many experts in the United States and other countries believe that the population of children who are deaf-blind has become more severely disabled over the past several decades. This may be due, in part, to advances in medical technology that have increased the survival rates for premature infants and children with very serious conditions, who are also deaf-blind.
The most common causes of vision loss in older adults are cataracts, glaucoma, age-related muscular degeneration, and diabetes/diabetic retinopathy. Although eliminated in babies in the United States, there is still a significant population of adults who are deaf and deaf-blind due to congenital rubella syndrome.
(HKNC, 2019)
(NCDB, 2017)
EDUCATIONAL IMPLICATIONS
Children with deaf-blindness require teaching methods that are different from those for children who only have hearing or vision loss. Hearing and vision connect a person with the world that extends beyond their personal body space. With limited distances for these senses, children who are deaf-blind may feel isolated in their ability to interact and learn from their environment. Ensuring functional and age-appropriate curricula that includes frequent and varied positive interactions with typically developing peers can help children with deaf-blindness more easily access their learning environment.
The National Center on Deaf-Blindness has compiled a Deaf-Blind 101 Resources page for parents and educators. Information regarding best-practice assessment, environmental, social-emotional, and motor-movement strategies are accessible here in English and in Spanish: https://nationaldb.org/pages/show/db-101-introductory-page
ORGANIZATIONS AND RESOURCES
Helen Keller National Center for Deaf-Blind Youths and Adults (HKNC)
www.helenkeller.org/hknc
141 Middle Neck Road
Sands Point, NY 11050
hkncinfo@hknc.org
Phone: (516) 944-8900
Authorized by an Act of Congress in 1967, HKNC is the only organization of its kind – providing training and resources exclusively to people age 16 and over who have combined vision and hearing loss. Students travel from across the country to the Sands Point, NY headquarters and regional offices throughout the United States for on-campus training in assistive technology, vocational services, orientation and mobility, communication, and independent living. Instructors are sensitive to cultural differences between students and different levels of hearing and vision loss and varying educational backgrounds. HKNC is also a leader in professional learning, “training the trainers” to work with the deaf-blind community. HKNC is the national division of Helen Keller Services, which also includes Hellen Keller Services for the Blind, a regional division serving the New York City/Long Island area.
National Center on Deaf-Blindness (NCDB)
nationaldb.org
141 Middle Neck Road
Sands Point, NY 11050
info@nationaldb.org
Phone: (503) 838-8754
As a national technical assistance center funded by the Federal Department of Education, NCDB works to improve the quality of life for children who are deaf-blind and their families by: 1) Creating visibility and direction for identified priorities through a range of practice, activities, supports, and partnerships; 2) Identifying and encouraging new innovations in local, state, and national practice and policy; 3) Promoting opportunity for reflection, debate, and constructive dialogue around ideas and developing practice; and 4) Maintaining a rich repository of content, history, and knowledge, easily available and shared by all who are a part of the community of deaf-blindness.
National Family Association for Deaf-Blind (NFADB)
nfadb.org
141 Middle Neck Road
Sands Point, NY 11050
NFADBinfo@gmail.com
Phone: (800) 255-0411
The mission of NFADB is to empower the voices of families of individuals who are deaf-blind and to advocate for their unique needs. Every person who is deaf-blind has unique abilities, goals and needs. This is true for families also. To address the uniqueness of deaf-blindness, we work side by side with families, friends and professionals to build community, provide parent education services, and develop collaborative relationships with national and state organizations for projects, referrals, and sharing of resources.
Last modified October 2019.