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Deafblindness

What is Deaf Blindness?

Deafblindness (or dual-sensory-impairment) is a unique and “low incidence” condition which brings enormous challenges to the individual and those who support them. Deafblindness has many causes. It affects people of all ages in different ways, and no two deafblind people are the same. Many people will not be totally deaf and totally blind but will have some remaining use of one or both senses.

There is a wide variation in the conditions of people who are Deaf-Blind:

Deaf and low vision
Deaf and limited peripheral vision
Deaf and blind
Hard of hearing and low vision
Hard of hearing and limited peripheral vision
Hard of hearing and blind

Who Is Affected

There are approximately 40,000 to 70,000 deaf-blind people in the United States aged birth to death.
The National Deaf-Blind Children Count Registry, sponsored by the National Technical Assistance Center, a program of Helen Keller National Center, estimates that there are 10,000 deaf-blind children in the U.S. aged birth to 21.

Conditions That Lead to Deaf-Blindness

Congenital Rubella Syndrome (CRS)

Between 1964 and 1965, there was a worldwide epidemic of rubella, also known as German measles. Pregnant women who contracted rubella in the first trimester of their pregnancy could pass the rubella virus to their developing fetus, causing the child to be born deaf, blind, with cardiac problems, developmental delays and other medical conditions. In the United States alone, approximately 20,000 children were born during this epidemic with two or more of these symptoms. This constellation of symptoms is known as congenital rubella syndrome, or CRS.¹

Usher Syndrome

People with Usher have a genetic condition which means they are born deaf or hard of hearing, then gradually start to lose their sight. The sight loss often begins in late childhood and is caused by an eye condition known as Retinitis Pigmentosa (RP). RP is a disease of the retina. The retina slowly degenerates and loses its ability to transmit pictures to the brain.The early symptoms include difficulty seeing in the dark and in different lighting conditions. Over time vision gradually deteriorates until tunnel vision develops.

Many people do not realise they have Usher until they begin to have problems with their sight. They will have grown up as deaf or partially hearing, and coming to terms with losing their sight as well can be very hard.

Normal Aging

Changes in sensory abilities are common to aging. A small number of people experience losses of both sight and hearing. Because the changes are often gradual, older people becoming deafblind may be surprising unwilling to acknowledge the level of functional impairment.

Looking at the Impacts

Functional impairments of people who are deafblind combine those of hearing limitations and sight limitations and vary along a very broad spectrum of intensity. Each individual will have a unique set of functional limitations and abilities.

Vision

Sight allows the sensing of light and the form, size, shape and color of visual stimuli.
These functions are very important for discerning objects for personal safety, for discerning people by sight, and discerning visual language and speechreading.
Vision impairments may affect reading, finding one’s way, judging distance, judging visual cues of danger in the outdoors, or judging safety in unfamiliar environments.

Hearing

Key functions that can be impacted by hearing loss include:

Hearing speech, including for some, the ability to differentiate speech within other sounds
Hearing emergency or informational notifications and recordings
Hearing abrupt changes in the physical environment, such as a fast car when crossing a street