This page tells you what deafblindness is, including the legal definition.
It also covers the different types of deafblindness, its causes in newborn children and adults, diagnosis, signs of deafblindness, treating the underlying causes and managing the condition.
You’ll also find a link to contact details for support from Sense.
On this page:
- What is deafblindness?
- Who does deafblindness affect?
- Types of deafblindness
- Other names for deafblindness
- What causes deafblindness?
- What are the signs of deafblindness?
- Diagnosing deafblindness
- Managing deafblindness
- Get support from Sense
What is deafblindness?
Deafblindness is a disability in its own right.
It means you have sight and hearing loss that affects your everyday life. Access to information, communicating with people and getting about on your own can be much more difficult.
Being deafblind doesn’t necessarily mean you are totally deaf and/or totally blind. Most people who are deafblind have some sight and some hearing.
Even with mild sight and hearing loss, you’ll still experience challenges because of how having both sight loss and hearing loss affects you.
The legal definition of deafblindness
In 1995, the Department of Health established a legal definition of deafblindness:
“A person is regarded as deafblind if their combined sight and hearing impairment cause difficulties with communication, access to information and mobility. This includes people with a progressive sight and hearing loss.”
Who does deafblindness affect?
Deafblindness affects people of all ages, including children and young people.
It is more common in older people, because our sight and hearing naturally worsen as we get older.
There are more than 400,000 people who are deafblind in the UK. It’s thought there will be more than 600,000 by 2030 due to our ageing population.
Types of deafblindness
There are two main types of deafblindness:
You are born with sight and hearing impairment, or it becomes apparent within the first two years of life.
This may be because of infections during pregnancy, premature birth, birth trauma (physical injury) and rare genetic conditions (conditions you inherit from a parent).
You develop sight and hearing loss later in life. Anyone can become deafblind at any time through illness, accident or ageing.
Sometimes, you can be born with either a hearing impairment only or a vision impairment only, but as you age your other senses also start to change or worsen.
Other names for deafblindness
Deafblindness is also known as:
- Dual-sensory impairment.
- Multi-sensory impairment.
Many people use these terms to mean the same as deafblindness.
Some people choose to use “deafblindness” to describe more severe sight and hearing loss.
Others prefer “dual-sensory” because they feel it describes more accurately how it feels to be deafblind.
Then there are others who feel “multi-sensory impairment” is more accurate.
This is because it may be about how your brain handles the information it gets from your ears and eyes, not about how your ears and eyes function.
What causes deafblindness?
There are many causes of congenital deafblindness and acquired deafblindness.
Causes of congenital deafblindness
Congenital deafblindness can be caused by:
- Problems associated with premature birth – birth before 37 weeks of pregnancy.
- An infection in a baby in the womb, such as rubella (German measles), toxoplasmosis or cytomegalovirus (CMV)
- Genetic conditions, such as CHARGE syndrome or Down’s syndrome.
- Cerebral palsy – a problem with the brain and nervous system that mainly affects movement and co-ordination.
- Foetal alcohol syndrome – health problems caused by the mother drinking alcohol while pregnant.
Causes of acquired deafblindness
Acquired deafblindness can be caused by:
- Age-related hearing loss.
- Usher syndrome – a genetic condition that affects hearing, vision and balance.
- Age-related eye problems, such as age-related macular degeneration, cataracts and glaucoma.
- Diabetic retinopathy – the cells at the back of the eye are damaged by high blood sugar levels.
- Brain damage from, for example, meningitis, encephalitis, a stroke or severe head injury.
What are the signs of deafblindness?
Signs of hearing loss/Deafness
Signs that you may have a problem with your hearing include:
- Not hearing someone if they speak to you from behind.
- Being startled because you didn’t hear someone coming into the space you’re in.
- Needing to turn up the volume on the television or radio.
- Avoiding using the phone.
- Delay in responding to people talking to you.
- Trouble following a conversation, especially when several people are talking or you’re talking to someone you don’t know.
- Commenting that people are mumbling or speaking too quickly.
- Not responding to noises around you, such as a knock at the door or the doorbell.
- Having to ask others to speak loudly, slowly and more clearly.
- Having to lean in very close to hear what’s being said.
Signs of sight loss
Signs you may have a problem with your vision include:
- Finding it harder to see clearly in low light or bright light.
- Often thinking that you need new glasses.
- Not recognising people you know, especially in unexpected situations.
- Difficulty reading facial expressions.
- Not responding to someone smiling at you.
- Relying on touch to find and identify items more than usual.
- Having to hold books or newspapers close to your face.
- Having to sit close to the television.
- Holding your head at unusual angles.
- Bumping into or tripping over things regularly.
- Difficulty moving around unfamiliar places.
- Getting anxious moving from one place to another, such as from indoors to outdoors.
- Not looking directly at people or making proper eye contact with them.
Spot the signs and get help
If you already have a hearing impairment/Deafness, and maybe wear a hearing aid or use sign language, look after your eyes. Watch out for signs that you are also developing sight loss and make sure you have regular eye checks.
If you already have a sight impairment and maybe wear glasses, use a cane to get around or have a condition such as glaucoma or cataracts, look after your hearing. Watch out for signs that you are also developing hearing loss and make sure you have regular hearing tests.
If you spot any of the above signs, speak to your GP as soon as possible.
The sooner deafblindness is diagnosed, the sooner treatment, if that is an option, or management of the condition can begin and the more helpful this is likely to be.
Early diagnosis will also help you to get quicker access to local support services.
If you are a parent of a pre-school or school aged child, make sure to ask for a referral to a relevant educational support service.
Find out about Sense services in your area.
It will also help you to plan for your future, including learning about different ways of communicating.
If you’re reading this information because you’re concerned about your child or someone else you know, and you notice any of the above signs, then encourage them to speak to their GP as soon as possible – for all the reasons given above.
Deafblindness may be detected soon after a baby is born or after tests carried out later in life.
If it isn’t and you are concerned about your baby, talk to your GP or health visitor.
If your baby is born deafblind, this will usually be picked up during newborn screening – a series of checks to see if your baby has any serious health problems from birth, including with hearing or sight.
Support is available. Speak to your GP or health visitor if you have any concerns about your child’s hearing or vision at any point.
Hearing and sight tests for adults
Because deafblindness is more common in older people, it’s important to have routine eye tests – normally every two years.
You can ask your GP for a hearing test at any time if you think you’re losing your hearing.
If you have both vision and hearing impairment/Deafness, you should be identified with deafblindness. You should also have regular checks afterwards, as the level of care and support you need might change depending on how severely each sense is affected.
Remember, another term maybe used to describe your condition. This maybe dual sensory impairment, multi-sensory impairment or that you have a vision and hearing impairment.
Councils in England and Wales have a responsibility to follow the requirements of the 2014 deafblind guidance.
This means that with deafblindness, your local authority must have a selected lead for deafblindness and assessments should be done by a specialist. This means:
- For a school-aged child, you can request an assessment for need in education by a qualified teacher of multi-sensory impairments.
- If you require a Deafblind Guidance assessment to look at your social care needs, this must be a specially trained professional to carry out the specialist assessment.
The Deafblind Guidance assessment will be to find out what your needs are in the following areas:
- One-to-one human contact.
- Social interaction.
- Emotional wellbeing.
- Support with mobility.
- Assistive technology.
The assessment will take into account your needs now and what they’re likely to be in the future.
Managing life with deafblindness
Treating underlying conditions
Some conditions that affect hearing and vision can be treated using medication or surgery:
- Cataracts can often be treated by surgically implanting an artificial lens in the eye.
- Glaucoma can often be treated using eye drops or laser surgery.
- Diabetic retinopathy can be treated in the early stages using laser surgery.
Care and support through an individual care plan
It’s not always possible to treat the underlying causes of deafblindness, but care and support services are available.
As a person who is deafblind, you should have access to services suitable to your level of hearing and sight, and your individual needs.
Services aimed mainly at people who are blind or deaf may not always be right for someone who is deafblind.
Following your assessment, an individual care plan should be drawn up to:
- Preserve and make the best of any remaining sight or hearing you have.
- Teach you other communication methods.
- Help you hold on to as much independence as possible, for example, by recommending you get training to use a long cane or guide dog, or by providing a communicator guide.
- If you’re a parent of a child who is deafblind, it will make sure their educational needs are met.
Vision aids, hearing aids, implants and other devices
A wide range of vision aids and hearing aids, implants and devices are now available. Find out more about these:
Get support from Sense
Sense has been supporting children and adults who are deafblind for more than 60 years. We can help you find the information and support you’re entitled to and all the information you need.
Everybody with a combined sight and hearing loss connects, communicates and experiences the world differently.
The approach to support we offer will vary, especially between the two main types of deafblindness explained above.
But with the right support, you – or your child – can lead a connected and fulfilled life.
Ask us how we can support you
If you or a loved one are deafblind, and would like some support, get in touch with our friendly team.
This content was last reviewed in April 2022. We’ll review it again next year.