Deafblindness

Statistics

Overall statistics about deafblindness in the UK:

  • No. of deafblind people in the UK(1): 23,000
  • No. deafblind people for 100,000 of population(2): 40
  • Total no. of people with some degree of both sight and hearing impairment in UK (3): 250,000
  • No. of causes of congenital and acquired deafblindness: Over 100
Source: Sense


European Union deafblindness statistics:

  • In the European Union there are at least 150,000 deafblind people
Source: European Deafblind Network, 2006


American deafblindness statistics:

  • Helen Keller National Center maintains a national registry of people who are deafblind. Using this registry, they try to determine the number of people who are deafblind in the United States. The registry currently has about 11,000 people listed. Estimates of the number of Americans who are deafblind range from a low of 40-70,000 to a high of more than a million when we include adults who have lost their vision and hearing due to aging
Source: Helen Keller National Center, 2007


Canadian deafblindness statistics:

  • Of the roughly 69,700 Canadians (aged 12 and older) with combined hearing and vision loss (disabilities range from partial loss of both senses to total loss of both) in 2000/01, 56% were women and 44% were men. The vast majority (70%) were seniors, with about 15% under age 45 and another 15% aged 45 to 64
Source: Canadian Council on Social Development, 2004


What is it?

Two deafblind people communicating via deafblind manual alphabet.Deafblindness is a combination of both sight and hearing difficulties. There are about 23,000 people in the UK who have a serious impairment of vision and hearing. Some of these people are completely deaf and blind, but others have some remaining use of one or both senses.


A further 250,000 people experience some degree of dual sensory impairment, many in older age.

Definition of Deafblindness from the Department of Health
In March 2001 the Department of Health issued "Social Care for Deafblind Children and Adults" LAC (2001) 8 under Section 7 of the Local Authority Social Services Act 1970. This guidance gave new rights to deafblind people and placed new duties on local authorities. As part of this guidance, the Department of Health produced a definition of deafblindness. It stated:

"Persons are regarded as deafblind if their combined sight and hearing impairment cause difficulties with communication, access to information and mobility."


Causes

A person can be born deafblind (called congenital deafblindness) or acquire deafblindness later in life.

Congenital deafblindness
In the past, a likely cause of congenital deafblindness was a mother getting rubella (also known as German measles), when she was pregnant. Rubella is a very infectious disease, but because children and adults are now vaccinated against it, it is less common.

  • No. congenital rubella births reported 1971–1980(4): 447
  • No. rubella associated pregnancy terminations reported 1971-1980(4): 5,711
  • No. congenital rubella births reported 1991-2000 (following vaccination programme)(4): 38
  • No. rubella associated pregnancy terminations reported 1991-2000 (following vaccination programme)(4): 6

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.

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.

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 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.

Usher Syndrome affects 3 - 6% of the people in the UK who were born deaf or partially hearing.

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.
For further information on syndromes and diseases that cause deafblindness please click on the following link: List of syndromes and diseases that cause deafblindness.


Effects

Having a combined sight and hearing loss leads to difficulties in:


Communicating

A guide/communicator helping a dual sensory impaired person.People who are deafblind use many different methods of communication. The method chosen will depend upon the amount of residual sight and hearing remaining, the cause of deafblindness and how long the person has had a sensory impairment.

 

Of course, some deafblind people use a combination of methods to communicate.

Some of the main methods of communication include:

Significant objects of reference
Some people who are deafblind learn to use objects which symbolise a particular significant activity. For example, a person may use a cup to show that they want a cup of tea. Other people may use this cup symbol to offer the person a drink.

British Sign Language (BSL)
This is a language in its own right and is a visual means of communication using hand signs and facial expression. Often used by members of the deaf community; it follows its own word order and grammar.

Two people's hands communicating through BSL.

Finger spelling
In this means of communication the alphabet is represented by placing the fingers of one hand on the other in a variety of ways to represent different letters. This is used to complement signing systems (for names and places). It is not a signing system in itself.

Visual frame signing
People who are deafblind and have limited vision may be able to “read” British Sign Language signs, if the signs are presented within their remaining field of vision.

Hands on signing
Some people may use tactile or ‘hands on’ signing by placing their hands over the hands of the signer, so that they can feel the signs being used. People with Usher Syndrome may learn this form of communication as their sight reduces.

Makaton
This uses some of the main British Sign Language signs. No grammar is included within the Makaton system and some people find this easier to learn.

Signed English
This is a form of British Sign Language that is generally used as a teaching tool. A sign is used for each spoken word and is delivered by the teacher simultaneously with speech.

Sign Supported English
With Sign Supported English, the person who is speaking uses signs for the significant parts of the sentence spoken.

Deafblind manual alphabet
This method uses the slightly modified finger spelling alphabet where the letters are spelt out by positioning the fingers on the receiver’s hand. Both people using this method will need to be able to spell confidently.

Letter l in deafblind manual alphabet

Oralism/auralism methods
Some people who are deafblind use an approach which emphasises the use of spoken language together with lip reading and correctly fitted and adjusted hearing aids.

Block
This method is sometimes used where either person does not know the deafblind alphabet. Each letter of a word is spelt out in capital letters onto the receiver’s palm.

A drawing showing how to create letters in block

Print or Large Print
Some people who are deafblind, who are used to reading and writing as a means of communication, may request that words are written using print or large print.

Braille and Moon
These are both tactile means of producing text. Braille uses a series of raised dots to represent letters or groups of letters. Moon uses raised symbols many of which are quite close to ordinary block letters in appearance.

Tadoma
With this method the deafblind person feels the speaker’s lips and the speech vibrations from the speaker's throat.

 

Two people using tadoma to communicate.

Use of technology
Increasingly, deafblind people are making use of new technology to communicate. The types of technology that will be suitable will depend on the type and degree of visual and/or hearing impairment. Deafblind people may use computers, for example, to communicate in a large variety of ways. Examples include:

  • text on a disc can be printed out in large print for people with partial sight
  • text on a disc can be outputted onto a braille keyboard for braille readers
  • text on a disc can be read out by a voice synthesiser for people with partial hearing
  • people with multiple disabilities may be able to use computers for learning opportunities

Other examples of technological advances include:

  • an amplifier on a telephone
  • textphones - which are like telephones with a text display
  • loop systems for hearing aid users

This is only a very brief summary of some of the uses of technology. There are many more technological adaptations and more are being developed all the time.

Symbol Systems
Some communication systems can assist people to communicate. Examples include Blissymbols, Rebus symbols and Makaton symbols:

  • Blissymbols
    This is an abstract symbol language which is designed to meet the vocabulary needs of a person without speech. It combines other symbols - for example a symbolised picture of an ear can be combined with another symbol to represent “quiet”, or with a different symbol to represent “noisy”
  • Rebus symbols
    These are line drawings of objects or actions as well as some abstract symbols for use as a communication aid
  • Makaton pictures
    These are pictures and symbols linked to the Makaton sign vocabulary


Mobility

Deafblind person walking with a red and white cane.Finding the way from A to B can be difficult enough if someone has little or no sight, but it is so much worse when the person has little or no hearing to help them get their bearings. Crossing a road when you can neither clearly hear nor see the traffic is extremely dangerous. Also, quite a few deafblind people have the added problem of poor balance and have difficulty walking without someone beside them to steady them. Whereas blind people use a white cane to show they have sight problems, deafblind people use the same white cane but with red bands around it, which shows they have a loss of hearing as well as sight.


Accessing information

Deafblind people with a little sight need much larger print to be able to read it. Others who are blind need their information in a tactile form such as Braille or Moon which they can read with their fingertips. Those who have a little hearing left, may prefer to have information provided on CD or audio cassette.

There are a number of ways that information can be made accessible to deafblind people (Deafblind Scotland):


There are many products and devices available that will assist deafblind people with communication, mobility and accessing information:


Legislation

There are 2 UK laws that protect the rights of deafblind people:

The Disability Discrimination Act (DDA) 1995 covers everyone who has a 'physical or mental impairment which has a substantial and long-term adverse effect on the ability to carry out normal day to day activities'.

In May 2001, the government introduced Deafblind Guidance under Section 7 of the Local Authority Social Services Act to make sure deafblind people receive the support and services they require from their local authority.

Across Europe, the Written Declaration 1/2004 has been adopted. This means that the European Parliament has officially recognised that deafblindness is a separate disability and that deafblind people have the same rights as any other European citizens. This includes the right to the one-to-one support that deafblind people need to access information and many everyday activities.


Research

An example of a research project in deafblindness is the National Collaborative Usher Study.

The aim of this major study is to develop the next stage in our understanding of Usher syndrome by linking information about the type and severity of hearing balance and vision loss in people with Usher syndrome with the gene that causes their disorder. The National Collaborative Usher Study (NCUS) is in its final year (2007). Clinical and genetic information has been collected from 185 families and on over 220 individuals. Molecular diagnosis has been made on the majority of study participants. Further genetic analysis on certain families has yet to be completed. (Sense).

Further information on other research projects can be found at National Consortium on Deaf-Blindness: Research to Practice.


Further information


Acknowledgements

The above information was collected from the following sources:


Picture acknowledgements


(1) Defined as "people with a severe degree of combined visual and auditory impairment resulting in problems of communication, information and mobility"

(2) Figures based on a series of local surveys which were conducted in a number of areas and showed a fairly consistent pattern

(3) RNIB research

(4) Vaccination was introduced for schoolgirls in 1970 and since 1988 the combined MMR vaccine has been offered to all children in the second year of life

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