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Management - Deafblindness

It's not always possible to treat the underlying causes of deafblindness, but a range of care and support services is available to help people with the condition.

Most deafblind people will still have some hearing or vision. The level of care and support they need will depend on the severity of their hearing and vision problems.

Individual care plan

The individual abilities and needs of a deafblind person should be assessed soon after they're diagnosed. This will allow a tailored care plan to be drawn up.

The care plan will aim to:

  • preserve and maximise any remaining sensory functions the person has
  • teach alternative communication methods such as the Deafblind Manual
  • help the person retain as much independence as possible – for example, by recommending they receive training to use a long cane or guide dog or through the provision of a communicator guide
  • for young children, ensure their educational needs are met

Some of the main services, techniques and treatments that may be recommended as part of a care plan are outlined below.

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Communication systems

As deafblindness can make communicating by speech and writing difficult, alternative forms of communication may be necessary.

The main communication systems used by deafblind people include:

  • clear speech – speaking clearly is one of the most effective and common ways of communicating with deafblind people who have some remaining vision and hearing
  • Deafblind Manual – a tactile form of communication where words are spelt onto the deafblind person's hand using set positions and movements
  • block alphabet – 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 – an adapted version of British Sign Language (BSL) where the deafblind person feels what's being signed by placing their hands on top of the signer's hand
  • visual frame signing – an adapted version of sign language where the person communicating signs in a smaller area to match a deafblind person's field of vision
  • braille – a system that uses a series of raised dots to represent letters or groups of letters
  • Moon – similar to Braille, but uses raised lines and curves similar to the print alphabet

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Vision aids

For some deafblind people, it may be possible to improve vision using low vision aids, such as glasses, magnifying lenses and task lights.

Specially designed items, such as telephones and keyboards, may also help someone who is visually impaired.

The Royal National Institute of Blind People (RNIB) has more information about everyday living with vision loss. Read the RNIB's information about technology to help with everyday tasks.

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 offers a talking book subscription service, where books can be ordered and delivered directly to your home or downloaded free of charge.

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Hearing aids and implants

Some deafblind people may benefit from wearing a hearing aid. There are various hearing aid styles available to suit different types of hearing loss and personal preference.

Hearing aids use microphones to pick up sound from the environment, amplify it and deliver it into the ear canal so that it can be processed by the auditory system. An audiologist (hearing specialist) will be able to recommend the most suitable type of aid after testing your hearing.

For some people, hearing aids that deliver the sound into the ear canal are not appropriate. In these cases, hearing may be improved using a surgically implanted hearing system, such as a cochlear implant or bone anchored hearing implant.

While these still use a microphone to collect the sound initially, they then convert that sound into either an electrical signal or vibration, passing it to the inner or middle ear for processing by the auditory system.

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One-to-one support

Every deafblind person is entitled to help from a specially trained one-to-one support worker if they need it.

Depending on the person's situation, this may be a:

  • communicator guide – someone who works with people who have become deafblind later in life, to offer the support the person needs to live independently and act as an interpreter
  • intervenor – someone who works with children and adults who were born deafblind, to help them experience and join in the world around them as much as possible

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Treating underlying conditions

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

Some causes of temporary hearing loss are also treatable, such as earwax build-up or ear infections.

Support groups

If you're deafblind, or a friend or family member of someone who's deafblind, you may find it useful to contact a support group for information and advice.

Two of the main support groups for deafblindness in the UK are Sense and Deafblind UK.

You can contact Sense on 0300 330 9256 (voice and text calls), or by emailing: info@sense.org.uk.

You can call Deafblind UK's helpline on 0800 132320, text them on 07903572885 or email: info@deafblind.org.uk.

Page last reviewed: 25 May 2022
Next review due: 25 May 2025