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Deafblindness

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Deafblindness



Introduction

A person is deafblind if they have a combined sight and hearing impairment that causes difficulties with communication, access to information and mobility.

These difficulties can occur even when hearing loss and vision loss are mild because the two senses usually work together and one would usually help compensate for loss of the other.

For example, a person who is deafblind may have problems hearing what someone else is saying, as well as finding it difficult to read visual cues, such as facial expressions or body language.

This is why deafblindness (sometimes referred to as dual sensory loss) has a significant impact on a person's life, even if they're not totally blind or deaf.

Deafblindness most commonly affects older adults, although it can affect people of all ages, including children.

 

What causes deafblindness?

There are many potential causes of deafblindness. It can either be present at birth (congenital) or develop later in life (acquired).

Four basic groups of people who experience deafblindness have been identified – those who:



are hearing and sight impaired from birth or early childhood



are blind from birth or early childhood and then later start to lose their hearing



are deaf from birth or early childhood and then later start to lose their vision



develop hearing and sight loss later in life 



 

Congenital deafblindness

Congenital deafblindness is often caused by genetic conditions, such as Down's syndrome or CHARGE syndrome (a rare condition that can affect various parts of the body including the ears, eyes, heart, nasal passages and genitals). 

Other possible causes of congenital deafblindness include: 



excessive drug or alcohol use during pregnancy



a viral infection during pregnancy, such as rubella (although rubella is now rare thanks to the childhood vaccination programme)



a premature or traumatic birth 



 

Acquired deafblindness

Acquired deafblindness can be the result of age, illness or injury. Most people with acquired deafblindness have been able to see or hear for most of their lives.

Some people are born without the ability to see or hear and then start to lose their other sense later in life. For example, someone born with a hearing impairment may develop a condition that affects their sight, such as glaucoma, when they're older.

Although someone with acquired deafblindness can often have a fairly good level of sight or hearing, the combined loss will still make day-to-day living difficult.

 

Testing hearing and vision

It's very important for the sight and hearing of someone who is deafblind to be accurately assessed. This will ensure that they receive the appropriate level of care and support.

 

Living with deafblindness

Deafblindness can be a challenging disability to live with. Each person will have a different level of hearing and sight loss, which means they'll have their own individual care needs.

In cases of congenital deafblindness, treatment may not be possible so care will aim to:



preserve any remaining sight or hearing the person has 



teach the person alternative or informal methods of communication, such as hand on hand signing or objects of reference 



help the person develop as much independence as possible – for example, by training them to use a long cane, a guide dog or a sighted guide 



In cases of acquired deafblindness, it may be possible to identify and treat the cause of the hearing and sight loss. Social care support and rehabilitation training may also help.

For example, cataracts (cloudy patches that develop in the lens of the eye) can sometimes be treated with cataract surgery, and mild or moderate hearing loss can often be improved with a hearing aid.

 



 

 

 


 


It's important to accurately and regularly assess a deafblind person's level of hearing and vision 


Help and support

Deafblind UK is a national charity that supports deafblind people and those with progressive sight and hearing loss.

You can contact Deafblind UK's helpline for information and advice on 0800 132 320 (both voice and text calls). You can also email them:info@deafblind.org.uk.

Sense is another UK-based charity that provides advice and support for deafblind people. Their helpline numbers are 0300 330 9256 and 020 7520 0972 (same numbers for textphone). Alternatively, their email address is: info@sense.org.uk.






 

 

 


 


 


Long-term conditions

Living with a long-term condition, including healthcare, medicines and support

 

 

 

 

Symptoms of deafblindness 

Levels of hearing and sight loss vary between individuals who aredeafblind.

 

Hearing loss

In deafblindness, hearing loss can occur from birth or may develop later after an infection or injury. In other cases, a person's hearing may gradually deteriorate over time.

Someone with impaired hearing may find that speech and other noises sound muffled and indistinct and they may not be able to follow and understand conversations, particularly when there's background noise.

A person with a hearing problem may also need to turn up the volume on the television or radio and ask others to speak loudly, slowly and more clearly.

 

Sight loss

A person who is deafblind may have developed a condition that gradually causes their vision to deteriorate. For example, they may have an eye condition such as:



cataracts – cloudy patches that form on the eye's lens



glaucoma – pressure changes inside the eye that damage the optic nerve (the nerve that transmits images from the eye to the brain)



retinopathy – a number of eye disorders that damage the blood vessels of the retina (light-sensitive tissue at the back of the eye) and can lead to vision loss



Common symptoms of conditions that cause progressive sight loss include:



eye pain 



blurred vision



halos around light sources



reduced night vision



difficulty seeing in bright sunlight or well-lit rooms



 

When to seek medical help

In cases of congenital deafblindness, hearing and sight loss are usually detected soon after birth during early routine checks.

Visit your GP as soon as possible if you notice any deterioration in your hearing or eyesight. They may refer you to a specialist for hearing testsor vision tests.

If eye conditions such as glaucoma and cataracts are diagnosed early, they can be successfully treated before they cause significant damage to your sight.

You should also visit your GP if you have repeated ear infectionsbecause they could increase your risk of developing hearing loss.

 

Causes of deafblindness 

There are more than 70 different causes of deafblindness.

The condition can either be present at birth (congenital) or develop later in life (acquired). 

 

Congenital deafblindness

In the past, rubella (German measles) was the leading cause of congenital deafblindness. Rubella is a highly infectious virus that can seriously damage a pregnant woman's unborn baby. In particular, the baby's eyes, ears and heart can be damaged.

However, since routine rubella vaccinations were introduced in 1988, and due to the success of the MMR vaccine, the number of babies affected by rubella has decreased significantly.

Problems associated with premature birth are now a more common cause of deafblindness. Smoking and excessive alcohol consumption are both major risk factors for premature birth, so you should avoid both if you're pregnant.

 

Acquired deafblindness

Acquired deafblindness is where a person is born without a hearing or sight impairment and then later loses both senses. Alternatively, someone may be born with a single sensory impairment before losing part or all of their other sense.

Acquired deafblindness can be the result of age, illness or injury.

Sometimes, a child who is born deaf can gradually begin to lose their sight. This can be caused by a condition called Usher syndrome, where the retina (the light-sensitive layer of cells that line the back of the eye) gradually deteriorates.

As you get older, your hearing will often start to deteriorate as the cells inside your ear become damaged and are unable to repair themselves.

A similar process can also happen with your sight. Over time, it can gradually deteriorate as the cells at the centre of the retina start to break down. This process is often referred to as age-related macular degeneration (AMD).

There are also a number of other eye conditions that can cause sight loss if they're not identified and treated at an early stage. Some of the more common ones include:



cataracts – where cloudy patches develop in the lens of the eye, making your vision misty or blurred; cataracts can usually be removed with cataract surgery



glaucoma – where the tiny drainage tubes in your eye become blocked, causing pressure to build-up inside the eye that can damage the optic nerve (the nerve that transmits images from your eye to your brain)



retinopathy – a number of eye disorders that damage the tiny blood vessels of the retina; diabetic retinopathy is a common complication of diabetes where the cells of the retina are damaged by high blood sugar levels



 

Diagnosing hearing and vision problems 

A deafblind person's level of hearing and sight should be accurately and regularly assessed.

How well a person can hear and see will affect the level of care and support they need.

Deafblindness can have a significant impact on a person's ability to live independently. For example:



the ability to make choices and take control of their life



health and safety



managing the daily routines of their personal and domestic life



involvement in education, work, family, social and community activities



 

Specialist assessment

As soon as deafblindness has been identified, a specialist assessment should be arranged by the local authority.

The assessment should be carried out by a specially trained professional who is able to identify the deafblind person's needs. During the assessment, the following criteria will be taken into consideration:



communication



one-to-one human contact



social interaction



emotional wellbeing



support with mobility



assistive technology



rehabilitation



The assessment will also take into account the person's current needs and those that will develop in the future. For example, it will be easier for a person who is deafblind to learn alternative forms of communication before their condition deteriorates.

It's important that the deterioration of one or both senses is identified at an early stage so that appropriate action can be taken. This is particularly important in the case of children.

A deafblind person should have access to services suitable to their level of hearing and sight and their individual needs. Mainstream services aimed mainly at blind or deaf people may not be appropriate for someone with a dual sensory impairment.

 

Treating or managing deafblindness 

Most cases of deafblindness present at birth (congenital) can't be treated. In certain cases, it may be possible to treat acquired deafblindness.

A child with congenital deafblindness will have their hearing and sight assessed by a trained specialist at an early age.

A total loss of hearing and vision is rare. How much a deafblind person can hear or see will determine the level of care and support they need.

People who are born deafblind will have little or no means of communication and a limited understanding of the world. This is because they've never had the opportunity to hear, see, or interact with what's going on around them.

People who acquire deafblindness may be able to remember hearing and seeing things and are more likely to have had access to language learning.

This means that communication methods used by deafblind people will vary greatly depending on the type of deafblindness they have and their level of hearing and vision.

 

Individual care plan

As part of the assessment, the specialist will identify the person's individual needs and requirements which will form a key part of their care plan. The care plan will aim to:



preserve and maximise any remaining sensory functions that the person has



teach them alternative communication methods such as the deafblind manual alphabet (see below)



help them to retain as much independence as possible – for example, by recommending they receive training to use a long cane or guide dog



Identifying a deafblind child's level of hearing and sight at an early age is vital to ensure their health, social and educational needs are met. The child's care and education will form an important part of their overall care strategy from early childhood to adulthood.

 

Communication systems

There are several communication systems used by deafblind people. Some are described below.

 

Deafblind manual alphabet

The deafblind manual alphabet is a tactile form of communication. Words are spelt onto the deafblind person's hand, using set positions and movement, such as touching the tip of their thumb with your index finger to spell the letter 'A'.

 

Block alphabet

The block alphabet is a simple tactile form of communication where a word is spelt out in capital letters that are drawn onto the deafblind person's palm.

 

Hands-on signing

Hands-on signing is a communication method that uses an adapted version of British Sign Language (BSL). The deafblind person feels what is being signed by placing their hands on top of the signer's hand.

 

Visual frame signing

Visual frame signing is another communication method that uses an adapted version of BSL. The signs are adapted to be signed in a smaller space to match the position and size of a deafblind person's remaining sight.

Hands-on signing and visual frame signing are often used by people with Usher syndrome after their vision has started to deteriorate, as they usually have BSL as their first language.

 

Braille and Moon

Braille uses a series of raised dots to represent letters or groups of letters. There are a wide range of Braille publications, as well as specially designed computers that allow you to type and print Braille documents.

Moon is a similar communication system to Braille, but rather than using dots it uses adapted capital letters that are simpler to feel.

 

Vision aids

In some cases of deafblindess, it may be possible to improve a person's vision using low vision aids, such as glasses, magnifying lenses and task lights. Specially designed items, such as telephones and keyboards, may also be beneficial to someone who is visually impaired.

The Royal National Institute of Blind People (RNIB) provides information about specially designed equipment to help with everyday tasks, including writing equipment, kitchen equipment and audio description (for describing television programmes). 

Most computers have settings for people with reduced vision. Free software can also be downloaded from Browsealoud that reads aloud the text of speech-enabled websites. Most public information sites are speech enabled.

Many libraries stock a selection of large-print books and 'talking books', where the text is read aloud and recorded onto a CD. The RNIB also offer a talking book subscription service, where books can be ordered and delivered directly to your home for a small annual fee.

 

Hearing aids and implants

A person's hearing can often be improved by using a hearing aid. Hearing aids use a microphone to pick up sound and an amplifier to make it louder.

Various types of hearing aids are available to suit different types of hearing loss. An audiologist (hearing specialist) will be able to recommend the most suitable type after testing your hearing.

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Treatable conditions

Some conditions that affect hearing and vision can be treated using medication or surgery. For example:



cataracts can often be treated by surgically implanting an artificial lens in the eye; 



glaucoma can often be treated using eyedrops and laser surgery;



diabetic retinopathy can be treated in the early stages using laser surgery; 



Accumulated earwax is one of the most common causes of hearing loss and can often be easily treated with ear drops.

Hearing loss caused by a middle ear infection (otitis media) can usually be treated with antibiotics. s media.

 


Deafblind UK

 

Deafblind UK is a national charity that supports deafblind people and those with acquired progressive sight and hearing loss.

For information and advice you can contact Deafblind UK's helpline on 0800 132 320 (voice and text calls). You can also email them:info@deafblind.org.uk