Code: D01
Deafblindness is a unique disability. It is sometimes known as dual sensory impairment or multi-sensory impairment and is more than a combination of visual and hearing impairments. It is important to stress that many deafblind people may not be totally deaf and totally blind. Many of the UK's 23,000 deafblind people have some remaining hearing and vision. Some, though, have nearly complete loss of both senses. Someone is called deafblind when neither their sight nor hearing can compensate for the impairment of the other sense - in other words, they cannot function as a deaf person or a blind person.
95% of what we learn about ourselves and the world comes through sight and hearing. And because deafblind people lack these two `distance senses', they find that their mobility, communication and access to information are greatly affected.
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. It is important to emphasise however deafblind people are people first and foremost. 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
Medical conditions caused by premature birth and birth trauma are now more common causes of congenital deafblindness. These may be associated with rare genetic disorders or with infections during pregnancy. 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. Unfortunately, without the right kind of help, their mental and physical development may be slower than normal because of lack of stimulation. 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 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.
Sense also helps to support groups of people with Usher who want to be in contact with others who have similar difficulties in accessing information, and with communication and mobility.
For full details on how Sense helps people with Usher syndrome to live as full a life as possible contact Sense Usher services on: 0845 127 0060.
Older deafblind people
The largest group of deafblind people has developed hearing and vision problems as they get older. 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, you should contact the Sense Regional Adviser for your area.
If you require information in alternative formats including braille, large print, audio or disk then please contact the Communications department:
tel: 0845 127 0060
fax: 0845 127 0061
textphone: 0845 127 0062
This factsheet was produced by:
Sense
11-13 Clifton Terrace
Finsbury Park
London N4 3SR
Copyright Sense November 2003
