What is deafblindness?

Code: D01

Deafblindness is a combination of both sight and hearing difficulties. Most of what we learn about the world comes through our ears and eyes, so deafblind people face major problems in communication, accessing information and mobility.

There are many causes of deafblindness. These include premature birth, birth trauma and rubella during pregnancy, which can cause babies to be born deafblind. Some genetic conditions result in deafblindness. And any of us can become deafblind at any time through illness, accident or as we grow older.

People who are born deafblind often have additional disabilities, including learning and physical disabilities.

There are approximately 242,000 people in the UK who have a serious impairment of both vision and hearing. Some of these people are completely deaf and blind, but many have some remaining use of one or both senses. This figure includes 214,000 people who are over the age of 75.

Congenital and acquired deafblindness

A person can be born deafblind (called congenital deafblindness) or acquire deafblindness later in life, and the needs and problems of these two groups are very different. Their needs, skills, aspirations and challenges will be as varied as any group of people.

Sense's specialist support and training helps deafblind people in many different situations to develop their potential to the full.

Congenital deafblindness - the main causes

Rubella

When Sense began its work in 1955, rubella in pregnancy was the main cause of congenital deafblindness. Thanks to vaccination, it is now much less common, although many people who were born deafblind before the vaccine was introduced still need specialist help and care. If a pregnant woman has rubella (or German measles) during early pregnancy, it can also affect the developing baby. It seems that the virus damages cells of parts of the baby's body which are developing at the time that infection occurs. The effects can vary enormously, but hearing loss, visual difficulties and heart problems, are common.

Other causes of deafblindness

Various medical conditions (including rare genetic disorders and infections during pregnancy) premature birth and birth trauma are now more common causes of congenital deafblindness. In addition, severe infections during early childhood can lead to damage to the brain, bringing about similar problems to those faced by people born with deafblindness.

Many of these children will also have a wide range of other disabilities - such as learning difficulties, epilepsy, feeding problems, and severe physical disabilities and mobility problems. Deafblind children need to get appropriate specialist help and stimulation as soon as possible. Otherwise, the experience of extreme isolation leads to further difficulties in establishing communication and developing learning skills.

What support do congenitally deafblind people need?

Deafblindness creates special needs that cannot be met by services for people who are only deaf or only blind. In many cases, people born deafblind also have other physical and/or learning disabilities. People with multiple disabilities require specialist services geared towards each individual's combination of abilities and impairments.

Communication can be an enormous challenge as people born deafblind have trouble grasping even the concepts of language, not having been exposed to it naturally. Intensive 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 communication systems.

All deafblind children and adults have the capacity to learn and achieve. Early intervention with continuing intensive educational support is the key to a deafblind child's future development, and continuing support may be needed throughout a person's lifetime.

Sense's specialist training helps people learn to use their remaining sight and hearing as much as possible. The capacities of other senses - touch and smell particularly - must also be developed to the full.

What are the main causes of acquired deafblindness?

There are many causes of acquired deafblindness. The genetic condition Usher syndrome is a common cause, and there are increasing numbers of older people with failing sight and hearing. And 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 which causes deafness or partial hearing from birth and sight loss over a number of years. This sight loss often begins in late childhood and is caused by an eye condition known as Retinitis Pigmentosa (RP). Over time, vision gradually deteriorates, leading to increasing difficulties in moving about safely and in communication.

Usher syndrome is not associated with learning disabilities or other physical impairments. It is an inherited condition which is passed through the family. For the child to be born with Usher syndrome, both parents must either be carriers of the affected genes, or have the same type of Usher syndrome themselves.

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

But with the right training and support, people with Usher can learn new skills which can help them to maintain their independence. For example, they can learn about creating the optimum environmental conditions so that they can best use what vision or hearing they have. As their vision deteriorates, many people with Usher will learn to use some form of tactile communication – known as hands-on signing.

Sense also helps to support groups of people with Usher who want to be in contact with others who have similar difficulties and aspirations.

Older deafblind people

The largest group of individuals who have sight and hearing problems are older people. Of all the people in the UK over 75 who have a visual impairment around half will also be hard of hearing as well. Having said this, the common perception that sensory loss in older people is an inevitable part of ageing should be resisted. Many older people's sight and/or hearing can be enhanced or maintained, and a great deal can be done to help someone to use the remaining sight and hearing that they do have.

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

• people who have developed a dual sensory loss as they have got older - the largest group
• people who have adapted to blindness or partial sight during their lives, and are now losing their hearing
• older deaf, or hard of hearing people, whose usual means of communication is speech or sign language and who are now losing their sight
• older people who have had a dual sensory loss for all or most of their lives.

The problems created by dual sensory loss can lead to older people becoming increasingly 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 pursuits and hobbies. And yet, with the right help, older deafblind people can live fulfilling lives both at home and in their community. Some local authorities for example, provide Guide-helps or Communicator-guides who act as 'communicators' for a deafblind person, helping them to take an active part in everyday life. This may mean helping them to go out shopping, or to sort out their bills, or interpreting at the doctors - depending on the needs of each individual. Sense is campaigning vigorously for improvement to services for older deafblind people.

Where can I go for help?

If you:

• would like to find out more about deafblindness, or the services for deafblind people in your area
• require information in alternative formats including braille, large print, audio or disk - or would like this factsheet to be translated into your first language - please contact Sense’s Information Team.

tel: 0845 127 0060
fax: 0845 127 0061
textphone: 0845 127 0062

email: info@sense.org.uk

This factsheet was produced by:

Sense
101 Pentonville Road
London N1 9LG

Copyright Sense 2009