About this factsheet

This factsheet is part of RNID's general range. It is written for people who would like to know more about deafblind people.

This factsheet looks at:

At the end of this factsheet we give you details of organisations you can contact for further information.

What is deafblindness?

The Department of Health says people are deafblind "if their combined sight and hearing impairment cause difficulties with communication, access to information and mobility". Deafblindness is sometimes called dual sensory impairment, dual sensory loss or multi-sensory impairment.

There are about 23,000 deafblind people in the UK. Deafblind people may not be totally deaf and totally blind - some will have some hearing and/or vision.

What is congenital deafblindness?

Congenital deafblindness is when a person is born deafblind.

What are the main causes of congenital deafblindness?

Rubella

Rubella (also known as German measles) is a very infectious disease.  If a woman has rubella early on in her pregnancy it can affect her developing baby. The rubella virus can damage cells in parts of the baby's body. The effects of the virus can vary, but hearing loss, sight problems and heart problems are common.

In the past, a likely cause of congenital deafblindness was a mother getting rubella  when she was pregnant, but because children and adults are now vaccinated against it, it is less common.

Other causes of congenital deafblindness

These days, medical conditions caused by premature birth and difficulties in labour are more common causes of congenital deafblindness. These conditions can be linked to rare genetic disorders or infections during pregnancy. Severe infections during early childhood can cause damage to the brain and deafblindness. Many children with deafblindness will have other disabilities, such as learning difficulties, epilepsy (fits), feeding problems, severe physical disabilities and difficulty moving around.

What help do congenitally deafblind people need?

Someone who was born deafblind has special needs that cannot be met by services for people who are only deaf or only blind. They may have other physical and/or learning disabilities. People with multiple disabilities need suitable services to meet their needs.

People born deafblind can have trouble communicating. They may not understand the concept of language because they have not been exposed to it. One-to-one work with deafblind children helps them understand the human interaction that is the basis of communication. Deafblind people may use symbols, objects of reference, sign language, Braille and other types of communication.

Deafblind children need the right kind of help to learn. Their mental and physical development may be slower if they are not being stimulated enough. It is important to start working with deafblind children when they are young and they may need support throughout their life.

What is acquired deafblindness?

Acquired deafblindness is when people become deafblind later in life. 

What are the main causes of acquired deafblindness?

There are many causes of acquired deafblindness. Usher syndrome is a common cause. There are increasing numbers of older people with sight and hearing loss. Some people who have been born deaf or blind may also lose their sight or hearing through accident or illness.

Usher syndrome

Usher syndrome is a genetic condition that causes deafness or hearing loss from birth, and sight loss over a number of years. The sight loss often starts in late childhood and is caused by an eye condition called retinitis pigmentosa (RP). As their sight loss gets worse it becomes difficult for someone with Usher syndrome to communicate, and to move about safely.

Usher syndrome is not connected to learning disabilities or other physical problems. It is an inherited condition that is passed down through the family. For a child to have Usher syndrome, both parents must either carry the affected genes, or have the same type of Usher syndrome themselves. 

Living with Usher syndrome

When someone finds out that they have Usher syndrome, the news can be devastating. They will have grown up with deafness or a hearing loss, and coming to terms with losing their sight as well can be very hard. People often feel isolated from their friends and family and can have emotional and psychological difficulties as a result.

With the right training and support, people with Usher can learn new skills to help them keep their independence. For example, they can learn to create the best environmental conditions so that they can use what vision or hearing they have. As their vision gets worse, many people with Usher will learn to use some form of tactile (touching) communication.

What help do older deafblind people need?

The largest group of deafblind people developed hearing and vision problems as they got older. Of all the people in the UK over 75 who have a visual impairment, around half will also be hard of hearing. But there is a lot of support available to help someone use their remaining sight and hearing.

The following groups of older deafblind people all need different types of help:

The problems created by dual sensory loss can make older people withdrawn, depressed and isolated. They may find it much harder to look after themselves, do the shopping, read their mail or enjoy their usual leisure activities. But with the right help, they can live fulfilling lives at home and in their community. Some local authorities provide guides who act as 'communicators' for a deafblind person and help them take an active part in everyday life. Depending on their needs, this may mean helping them to pay bills or interpreting at the doctor's.

What equipment is available to help deafblind people?

Deafblind people can get equipment to help them live independently. These include:

The charity Sense can give you more information about equipment for deafblind people

Further information

Deafblind UK

Sense

Further information from RNID

If you want to find out more about some of the subjects covered in this factsheet you may find our factsheet "Working with a interpreter or communicator guide for deafblind people (opens new browser window)" useful. You may also want to get our "Deafblind manual alphabet card (opens new browser window)".