An employee who has always lip-read and relied on good lighting tells their manager that the evening shift is becoming difficult. Their hearing has not changed, but their side vision and night vision have. The usual adjustments for hearing loss no longer cover the whole picture, because the person is now managing two senses at once.
That is the situation for many people with Usher syndrome, and for the occupational health, HR and case management professionals supporting them. The good news is that most of what helps is practical and inexpensive. It starts with understanding how the two sensory losses interact, then adjusting communication, lighting and routines around the individual rather than around a diagnosis. A visual impairment workplace assessment and a hearing loss workplace assessment, considered together, are often the clearest way to do that.
About Usher syndrome
Usher syndrome is an inherited condition that affects hearing and vision, and in some people balance. It is usually described as three clinical types. Sense and Retina UK both describe type 1 as profound deafness from birth, with sight loss beginning in childhood and balance often affected from an early age. Type 2 involves hearing loss that is less severe than type 1 and is usually described as moderate to severe, with sight loss appearing in the teenage years or early adulthood and balance generally unaffected. In type 3, hearing is typically normal at birth and declines during childhood or later, sight loss follows, and Sense reports that around half of people develop balance problems later in life. Some people do not fit these patterns neatly and are described as having atypical Usher syndrome.
The sources are not identical on timing. Retina UK places type 2 sight loss in the teenage years, while Deafblind UK says retinitis pigmentosa usually develops by the early twenties. That is a reminder that these are general patterns, and that each person’s course differs.
The sight loss follows a pattern similar to retinitis pigmentosa. Night blindness and narrowing of side vision (peripheral field loss) are typically the earliest signs, and central vision tends to be affected later. Hearing aids may help many people with type 2, while in type 1 hearing aids may not help and cochlear implants may be considered, according to Retina UK. Many people with type 1 use British Sign Language (BSL) as their main language, whereas people with types 2 and 3 often communicate through speech supported by hearing aids and lip-reading (Deafblind UK).
On numbers, the figures are thin and differ by source. Retina UK describes Usher syndrome as rare, affecting approximately four to 17 per 100,000 people and varying between countries. Deafblind UK says studies indicate around 10,000 people with Usher in the UK. These come from different sources and methods, so treat both as estimates rather than settled counts.
How Usher syndrome can affect work
The effect on work depends on the type, the stage, the role and the environment. Reduced night vision can make low-light spaces, car parks, unlit corridors and evening shifts harder. Narrowed side vision can mean missing colleagues approaching from the side, objects at head or floor level, or gestures made outside the central field. Glare may also cause difficulty, although the experience differs between people.
When hearing loss sits alongside this, the usual compensations come under strain. Someone who relies on lip-reading or signing needs to see the speaker or signer clearly, and that depends on light, distance and angle. Someone who relies on hearing needs to be able to locate who is speaking, which can be hard when side vision is reduced. Group conversation, meetings and informal chat are often where the combined loss shows most.
Fatigue deserves particular attention. Deafblind UK describes concentration fatigue as tiredness caused by the effort of concentrating, common among people with hearing loss and also affecting those with dual sensory loss. It lists constant listening effort, visual compensation such as lip-reading and sign, and video calls as contributors. Back-to-back meetings can therefore be more costly than they look on a calendar.
Because sight and hearing may change over time, Deafblind UK notes that people have to adapt repeatedly and develop new strategies. For employers, that points to adjustments that are reviewed as the person’s needs change, not fixed once and forgotten. None of this means a person is less capable or unsafe. It means the environment and communication arrangements need to fit.
No-cost and low-cost workplace adjustments
| Area | Suggested adjustment | Why it helps |
|---|---|---|
| Lighting | Even, glare-free lighting in work areas and corridors. Avoid seating the person, or a speaker, with a window or bright light directly behind. | Supports night and low-light vision and keeps faces and hands visible for lip-reading or signing. |
| Meeting set-up | Small groups, one speaker at a time, speakers identified by name, and seating in a circle or horseshoe. | Reduces the effort of locating and following who is talking when side vision and hearing are both reduced. |
| Communication preferences | Agree the person’s preferred method (speech, BSL, hands-on signing, deafblind manual or another) and record it in a short communication profile. | Avoids guesswork and means colleagues adapt to the person, not the other way round. |
| Getting attention | Agree a consistent, polite way to attract attention, such as a light touch on the arm, before speaking. | A person with narrowed vision and reduced hearing may not notice someone approaching. |
| Information in advance | Send agendas, papers and slides before meetings in a format the person can use, and give a summary afterwards. | Cuts the load of following in real time and supports those who miss visual or spoken cues. |
| Breaks and scheduling | Build short breaks between long meetings and avoid stacking demanding communication tasks. | Helps manage concentration fatigue. |
| Orientation | Keep walkways clear, tell the person when furniture or layout changes, and describe where things are when giving directions. | Supports confident movement, especially in low light or with reduced side vision. |
| Support in person | Where appropriate, consider communication support or a communicator guide for meetings, off-site visits or unfamiliar locations. | Makes communication and access to new places practical and less tiring. |
| Alerts and emergencies | Check that fire alarms, evacuation arrangements and visitor procedures work for someone with both sight and hearing loss, and agree a personal plan. | Ensures safety information reaches the person in a form they can use. |
What this means for occupational health, HR and case managers
Combined sensory loss is easy to under-assess if sight and hearing are looked at separately. A referral that asks only about hearing, or only about vision, can miss the way one loss increases dependence on the other. Where there is dual sensory loss, ask for both to be considered together, and ask what the person does now to compensate and what that costs them in effort by the end of the day.
A good workplace assessment report should set out the person’s preferred communication methods, how the environment affects them, and the practical changes that would help, in language a line manager can act on. It should sit alongside occupational health, audiology and rehabilitation input, not replace it. Visualise assessments are specialist and practical rather than clinical, and they focus on the barriers at work and proportionate solutions.
Consider timing too. Conditions that change over time call for reassessment when the person or their manager notices that the current arrangements are not working. Early involvement of vocational rehabilitation can support retention, as the Vocational Rehabilitation Association UK notes in its Deafblind Awareness Week material, which also points out that many barriers arise because workplaces are not designed with accessible communication, lighting, acoustics or technology in mind.
Hints and tips for the individual
Tell your manager what works best for you, including your preferred way of communicating and the lighting you find easiest.
Ask for agendas and papers in advance, and for a short summary after meetings.
Plan rest after demanding conversations or meetings, and say when you need a break.
Agree how colleagues should get your attention and how they should introduce themselves and say when they leave.
Ask about Access to Work if you need equipment, communication support or help with travel.
Keep a short written note of what has helped, so adjustments can be reviewed as your needs change.
Building awareness and communication
Sense offers practical guidance for people communicating with someone who has Usher syndrome. Say your name when you begin a conversation and say when you are leaving. Tell the person when someone else joins, who they are and where they are. When referring to something, say what it is and where it is. Warn the person about low furniture, obstacles and steps rather than assuming they can see them. In the dark, offer an arm and ask, without grabbing. Attract attention with a tap on the top of the arm and stay where you are. Let the person choose the distance for signing, lip-reading or fingerspelling, keep signs and fingerspelling at chest level, and avoid large movements.
Communication methods vary. Sense lists several, including clear speech and lip-reading, BSL, visual frame signing for people with reduced vision, hand-under-hand signing and the deafblind manual alphabet. The deafblind manual is a touch-based method in which words are spelled onto the hand using signs based on the BSL fingerspelling alphabet. Not every colleague needs to learn these, but knowing that they exist, and asking the person which they use, makes a team far more confident.
A communicator guide supports a deafblind person to communicate and get around. Action Deafness describes the role as using each client’s preferred communication methods and helping people access the community. In a work setting this may include off-site meetings and unfamiliar venues, though the arrangement depends on who provides the support and how it is funded. Colleagues benefit from simple awareness training so that adjustments are understood and used.
Legal rights and support
Under the Equality Act 2010, a person is disabled where they have an impairment with a substantial and long-term adverse effect on their ability to carry out normal day-to-day activities. For progressive conditions, Schedule 1, paragraph 8 may treat a person as meeting the test before the effect becomes substantial if it is likely to do so. Schedule 1, paragraph 5 generally ignores the effect of treatment and aids, such as hearing aids, although sight correctable by glasses or contact lenses is treated differently. Where the definition is met, the employer must make reasonable adjustments.
Access to Work, run by the Department for Work and Pensions, can provide a grant for practical support such as specialist equipment, support workers, travel costs and workplace changes. GOV.UK states that it does not cover reasonable adjustments that employers must legally make. It applies to people who live and work in England, Scotland or Wales, and Northern Ireland has a separate system. Check GOV.UK for the current position before advising an individual.
Whether the definition is met for a particular person depends on their circumstances, and this article is general information rather than legal advice. This article is also not medical advice, and anyone with concerns about their health should speak to their own clinicians.
Specialist charities can also help. Deafblind UK has taken on the Usher service previously run by Sense, and says it supports people affected by all types of Usher syndrome, including education about Usher and communication techniques and employment support. Retina UK runs a helpline, peer support groups and information about genetic testing.
Summary
Usher syndrome affects two senses and the way they support each other, so the best adjustments look at both together. Start with the person’s own account of how they communicate and move around, agree a few simple changes to lighting, meetings and routines, and plan for them to change over time. Most of this costs little. What it needs is early conversation, consistent habits and someone with the right specialist knowledge to join the dots.
Frequently Asked Questions
It can be, where the definition is met, and the progressive conditions provision may help in some cases. It depends on the individual's circumstances, so this is general information rather than a legal conclusion.
In general terms, type 1 involves profound deafness from birth, type 2 involves less severe hearing loss from early on, and in type 3 hearing is typically normal at birth and declines later. Sight loss starts with night blindness and narrowing of side vision in all three, and balance is more commonly affected in type 1.
There is no single settled figure. Retina UK describes it as approximately four to 17 per 100,000 people, and Deafblind UK says studies indicate around 10,000 people in the UK. Treat these as estimates.
Access to Work can provide a grant for practical support such as specialist equipment, support workers and travel costs for eligible people in England, Scotland and Wales. Check GOV.UK for the current rules and how to apply.
If you or someone in your team has combined sight and hearing loss and would like expert, tailored support to stay productive and comfortable at work, you can arrange a workplace assessment with us.
Sources
Sense, Usher syndrome: causes and diagnosis: https://www.sense.org.uk/get-support/information-and-advice/conditions/usher-syndrome/
Sense, Living with Usher syndrome: https://www.sense.org.uk/get-support/information-and-advice/conditions/usher-syndrome/living-with-usher-syndrome/
Sense, Deafblind Manual: https://www.sense.org.uk/information-and-advice/communication/deafblind-manual/
Retina UK, Usher syndrome: https://retinauk.org.uk/about-inherited-sight-loss/types-of-inherited-sight-loss/usher-syndrome/
Deafblind UK, What is Usher syndrome?: https://deafblind.org.uk/what-is-usher-syndrome/
Deafblind UK, Concentration fatigue: https://deafblind.org.uk/concentration-fatigue/
Deafblind UK, Deafblind UK expands services for people impacted by Usher Syndrome: https://deafblind.org.uk/?p=84459
Vocational Rehabilitation Association UK, Deafblind Awareness Week 2026: https://www.vrassociationuk.com/resources/deafblind-awareness-week-2026-reducing-barriers-and-strengthening-inclusion-through-vocational-rehabilitation
Action Deafness, Communicator Guide Job Description (2025): https://actiondeafness.org.uk/wp-content/uploads/2025/01/Communicator-Guide-Job-Description.pdf
GOV.UK, Access to Work: https://www.gov.uk/access-to-work
GOV.UK, Access to Work eligibility: https://www.gov.uk/access-to-work/eligibility
legislation.gov.uk, Equality Act 2010, Schedule 1, Part 1: https://www.legislation.gov.uk/ukpga/2010/15/schedule/1/part/1