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People with learning disabilities are more likely to have serious sight problems but less likely to be able to successfully access eye care services than the general population. Good eye care helps people to live healthier, more active and independent lives.
There is a legal obligation for eye care services to make reasonable adjustments to ensure that people with learning disabilities can access services in the same way as other people. This might include making practical adjustments to the environment or changes in the process. This guidance gives examples of reasonable adjustments and signposts resources that can be used to support people with learning disabilities with their eye care. There are also examples of changes that can be made to systems or pathways to improve the eye care of people with learning disabilities.
Important eye care messages1:
- adults with learning disabilities are 10 times more likely to have serious sight problems than other adults and children are 28 times more likely
- people with very high support needs are most likely to have sight problems. They may not know they have a sight problem, and may not be able to tell people - supporters, carers and teachers often think that people can see very well
- 6 in 10 people with learning disabilities need glasses and often need support to feel comfortable to wear them
- adults should have an eye test every 2 years, sometimes more often, children should have an eye test every year
- everyone can have a sight test, with the right support
- the biggest single cause of avoidable sight loss across the world is those with very poor eye sight not having glasses
It is a common misconception that sight tests are just about glasses. In fact, the sight test is also about eye health and identifying sight threatening conditions which can often be treated. Some types of sight loss have no obvious signs or symptoms and it is important that such sight problems are detected early through eye tests, to maximise the opportunity for treatment.
This guide contains information about eye care and treatment for eye problems for people with learning disabilities. It is intended to be of use to family carers and paid supporters that would help someone with accessing eye care services. It also aims to help eye care professionals to provide services that are accessible to people with learning disabilities.
Under the Equality Act 20102, public sector organisations have to make changes in their approach or provisions to ensure that services are accessible to disabled people as well as everybody else. This guide (an update from one on the same topic published in 2013) is one in a series of guidance looking at reasonable adjustments in a specific service area. The aim is to share information, ideas and good practice in relation to the provision of reasonable adjustments.
A search was conducted for policy, guidelines, research and resources that relate to people with learning disabilities and eye care services. This guidance sets out the findings of the research and includes case studies and examples of reasonable adjustments. It also describes the online resources found and where they can be accessed.
Thank you to everyone who shared their expertise, resources and contributed examples from practice to this guidance. Some people have consented to share their stories, but some names and details have been changed about individuals in case study examples to anonymise them.
3. Definition of learning disabilities
A person with learning disabilities has:
- a significantly reduced ability to understand new or complex information and to learn new skills
- a reduced ability to cope independently
These will have started before adulthood, with a lasting effect on development. This doesn’t include people with conditions such as dyslexia, in which they have a difficulty with one type of skill but not a wider intellectual impairment.
Public Health England (PHE) estimates that there were 1,087,100 people with learning disabilities, including 930,400 adults, in England in 2015. The number of people with learning disabilities recorded in health and welfare systems is much lower. For example, in the same year, GPs identified 252,446 children and adults as having learning disabilities on their practice-based registers3. Those on the registers are likely to be the people who have more severe learning disabilities or more obvious conditions causing it (for example Down’s syndrome).
4. Signs that a person has learning disabilities
Like the rest of the population, people with learning disabilities come in many shapes and sizes. Some look a little different (for example, a member of a healthcare team might notice a person with Down’s syndrome), but lots do not. It is quite likely to be fairly obvious if a person has more severe learning disabilities, and GPs, family carers or support staff may flag this up when making an eye appointment. However, eye health teams need to be alert to the larger number of people who have mild to moderate learning disabilities that may be less obvious and whose GP may not have recorded this. They are less likely to have someone supporting them when attending eye appointments. These people will still need, and are entitled to, support both in their treatment and understanding of their personal eye care requirements as well as in managing the administrative aspects of claiming exemption from payment for treatment.
It may be a sign that a person has learning disabilities if they have difficulty:
- reading or writing, for example when completing forms
- explaining symptoms or a sequence of events
- understanding new information or taking information in quickly
- remembering basic information such as date of birth, address, health problems
- managing money
- understanding and telling time
If someone has one or more of these difficulties, it is important to speak to them about their communication or support needs and check if they understand and remember information.
5. Definition of reasonable adjustments
Reasonable adjustments can mean alterations to buildings by providing lifts, wide doors, ramps and tactile signage, but may also mean changes to policies, procedures and staff training to ensure that services work equally well for people with learning disabilities. For example, people with learning disabilities may require clear, simple and possibly repeated explanations of what is happening, and of treatments to be followed, help with appointments and help with managing issues of consent in line with the Mental Capacity Act. Public sector organisations should not simply wait and respond to difficulties as they emerge: the duty on them is ‘anticipatory’, meaning they have to think out what is likely to be needed in advance.
All organisations that provide NHS or adult social care must follow the accessible information standard. The standard aims to make sure that people who have a disability, impairment or sensory loss are provided with information that they can easily read or understand with support, so they can communicate effectively with health and social care services.
6. The structure of eye care services
6.1 NHS Sight Test
This is the way most people get their vision and eye health checked and corrected or treated. In England the majority of examinations are performed by community optometrists based in practice settings under what is called the General Ophthalmic Services or ‘GOS’ Contract. People can also pay privately for sight tests if they are not eligible for an NHS sight test. The recommended sight test interval is usually 2 years for adults and one year for children but it will depend on clinical advice.
Usually, sight tests take place at a community optical practice, although there is provision for mobile sight tests where an optometrist can visit a person’s home (including residential care) or a day centre if that person has a disability which means they are unable to leave home unaccompanied. People may also receive their glasses from dispensing opticians, who have advanced competencies to dispense glasses, contact lenses and low vision aids.
SeeAbility has a national database of optometrists and opticians which includes important information about the practice and the facilities they have available for people with learning disabilities. This includes examples of reasonable adjustments they can make, such as splitting the eye test over multiple appointments or use of the Kay picture test.
6.2 Secondary eye care
People may also have their sight tested and vision examined in secondary (hospital or community clinic) care and in some areas these services may be provided in schools or day centres.
A range of eye care professionals treat people with learning disabilities in clinics, including:
- orthoptists specialising in eye movement disorders and vision
- hospital-based optometrists and dispensing opticians
- ophthalmologists – ‘eye doctors’ – who will undertake more complex treatment or surgery
- ophthalmic nurses to support treatment
People may also be able to have their glasses or other aids dispensed at hospital or a clinic, or they may be given a voucher for use at a community optical practice.
Some people with sight problems will be eligible to be certified as Sight Impaired or Severely Sight Impaired. This needs to be done by an ophthalmologist. Sight certification can help someone to access important social care services and specialist visual impairment support.
6.3 Screening programmes
Sight problems which are not picked up early on in life can lead to permanent damage. Because of this an orthoptic led vision screen within the ‘school entry health check’ for 4 to 5 year olds is recommended by the National Screening Committee, and is commissioned by local authorities. Public Health England’s service specification for the child vision screening programme does not recommend screening for special schools, instead they recommend more comprehensive and regular eye care. A vision screen is not a full eye examination and does not pick up all eye conditions4 and so a full eye examination is recommended for children with learning disabilities and autism.
Diabetes can cause sight loss (diabetic retinopathy) and so in 2003 an NHS Diabetic Eye Screening Programme which offers everyone aged 12 and over with diabetes screening once a year. However, this does not replace the need for a sight test, and not all elements of eye health are checked.
6.4 Annual health checks
People with learning disabilities aged 14 and over should receive an ‘annual health check’ at their GP surgery. This is an enhanced service that most GPs provide for which they receive an extra payment. The annual health check is a useful time to reinforce the importance of sight tests. While GPs are not responsible for sight tests, the template the GP uses when they carry out the health check has a section where people are asked about their eyesight. If a person has not had their sight tested recently then this should be added to the health action plan that is produced as part of the annual health check. This should include details, where relevant, of who will support the person to make the appointment and attend the sight test.
6.5 Glossary of eye care professionals
Optometrists are qualified to carry out examinations, to advise on eye care and recognise abnormal conditions. They prescribe and fit spectacles, contact lenses and low vision appliances (such as magnifying aids). They can work in private practices, high streets, hospital eye departments or health centres or community clinics.
Opticians (dispensing opticians) are qualified to fit and adjust glasses. Some are further qualified to fit contact lenses or low vision appliances from a prescription supplied by an ophthalmologist or optometrist. They work in high street premises or hospital eye departments.
Ophthalmologists/ophthalmic surgeons are medically qualified doctors who are concerned with the treatment of medical and surgical conditions of the eye. They work in hospital eye departments, health centres/community clinics or in private practice.
Orthoptists are qualified to diagnose and treat problems in eye movement and how the eyes work together, such as squints and double vision. They work mostly with children and people with neurological conditions and have specific skills that help them assess people with learning disabilities, such as assessment of functional vision.
7. Entitlement to free NHS optical treatment and glasses in England
Free NHS sight tests are available for eligible groups including:
- children and young people in full time education under 19 years of age and people aged 60 and over
- those who are registered blind or partially sighted (or in need of a complex lens voucher for glasses - this applies to very high-powered glasses)
- those who have diabetes and those suffering from or predisposed to glaucoma (for example a close family member with the condition)
- people in receipt of certain benefits related to low income and those in receipt of NHS certificates for help with health costs
Working age adults with learning disabilities may be eligible to receive a free sight test, but this is not an automatic right. If a person needs glasses, they may be eligible for vouchers which can then be used in whole or part to pay towards the costs of these.
People with learning disabilities may be less able than others to understand if their sight test should be free and have more concerns about paying for the test and, if they need them, glasses. They may need more support than other people to understand information about eligibility for free sight tests, including written information that is in accessible formats, such as easy read.
There is more information from the NHS about free eye tests and optical vouchers.
8. National policy
There is a national policy in place to prevent sight loss. As part of a public health framework, the rates of certified sight loss in each local authority are being measured each year and give an indication of reasons why people are losing their sight.
The NHS long term plan includes a commitment to introduce sight tests in special schools. Participating eye care professionals will require training and accreditation in relation to this.
The regulator for the optical sector, the General Optical Council, expects practices and optometrists and dispensing opticians to ensure adjustments to eye care services are made. Good practice guidance from Royal College of Ophthalmologists and the College of Optometrists detailed in Table 2 of section 13.
9. Eye health of people with learning disabilities
People with learning disabilities are at a greatly increased risk of sight problems at any age. Adults with learning disabilities are 10 times more likely to have serious sight problems than other adults and children are 28 times more likely1.
The sight problems that people with learning disabilities experience can include:
- high refractive errors
- squint/eye turn
- poorly controlled or involuntary eye movements
- developmental abnormalities of the eye
- damage to the optic nerve
- problems with how the brain processes vision (commonly termed cerebral visual impairment)
Specific conditions such as Down’s syndrome and cerebral palsy can increase the risk of sight problems and there is increasing evidence that autism is associated with poorer sight5 6. People with learning disabilities may be at a higher risk of certain problems, such as developing cataracts at an early age or keratoconus (where the shape of the eye’s outermost layer changes). Around 4% of people with learning disabilities may self injure and this can risk damage to eyesight or, in rare cases, cause blindness5 7.
A recent study of over 1000 adults with learning disabilities found vision problems to be the most common condition in those who had more than one health condition, or ‘comorbidity’8. Visual impairment is an even greater problem for those people with profound and multiple learning disabilities. Given the high rates of sight problems in this group it has been recommended that anyone with a profound or severe learning disability should be considered visually impaired unless proven otherwise9.
Although no national data is collected, studies show that people with learning disabilities are often missing out on eye care and treatment:
- a study of 100 people with learning disabilities showed 50% of them had not had a sight test in the recommended period10
- over half of people with learning disabilities have said they were not asked about their vision in their annual health check, despite this being in the National template11
- despite the substantially increased risk of sight problems in children with learning disabilities it has been shown that 44% of children in special schools had never had a sight test12
- SeeAbility has been running a campaign to deliver sight tests to children in special schools and these tests have shown that around half of the pupils have a problem with their vision
Diabetes brings an increased risk of developing the sight conditions of diabetic retinopathy or glaucoma. People with learning disabilities are more likely to have diabetes – at most ages they are roughly twice as likely to have diabetes in comparison to the people in the general population13. However, despite their higher rates of diabetes there are lower rates of retinal screening for this group14.
9.1 Impact of eye health problems
Sight loss affects people in many different emotional and practical ways including:
- a negative impact on quality of life, independence and mobility
- feelings of helplessness, fear and anxiety
- feeling cut off from society
- loss of employment opportunities
- financial impact
- difficulties in accessing services and transport
- increased likelihood of trips, falls or accidents
- visual hallucinations (in some people who have lost a lot of sight)
For people with learning disabilities who may already need help with activities of daily living, sight problems can make daily life more difficult still. Visual impairment has been shown to significantly decrease daily living skills, communication and language15. There is also a risk of depression and lowered self-esteem or self-confidence. If a person has a serious problem (such as a sudden change in vision or painful eyes) but cannot express this due to limited communication, there is evidence it might be a trigger for self-injury or behaviour that those around them find challenging5 16.
10. Barriers to good eye care and accessing eye care services for people with learning disabilities
There are many reasons why people with learning disabilities do not get the eye care they need. Some of these are related to lack of awareness about how a sight test might help a person, the importance of regular sight tests and the lack of specialist expertise of eye care staff. Some of the factors relate to problems that individuals face in coping with tests and treatment. There may also be practical issues around access to services.
10.1 Awareness and knowledge
A lot of people with learning disabilities will be reliant upon family carers or paid supporters to book and take them to, an eye test. Supporters may not facilitate someone getting their eyes checked for a number of reasons5 7 11 17 18, such as:
- they may not understand why eye tests are so vital, the extent to which glasses can correct vision and the importance of early identification and treatment of sight conditions
- it can be difficult to know what another person’s functional vision is like; cognitive limitations and communication difficulties can make it hard to recognise sight loss
- they may not realise the importance of routine eye tests even if someone does not have problems with their vision - eye tests can detect underlying health conditions
- they may assume the person can’t be tested if they cannot read or speak
- they may think the person they support could not cope with having a sight test - they might not be aware of the reasonable adjustments that could help
- family carers and paid supporters may not know if there are optometrists experienced in seeing people with more severe or profound learning disabilities – one study showed that in Berkshire there were optometrists who were experienced and skilled in working with people with learning disabilities, but they had very little profile amongst the learning disability community
- they may see no benefit in the person having an eye tests because they do not think the person would tolerate wearing glasses
- they may think there is no point in the person having glasses because they don’t read
- sight tests may be seen as a low priority - other aspects of healthcare might be given precedence over sensory checks which are seen as ‘non-life-threatening’
Research with health and social care professionals in the UK found that although the majority of respondents said they were responsible for the health and vision needs of someone with learning disabilities, more than half did not know how often they should visit an optician.
Sight tests for people who struggle to understand what is being done and may be uncooperative and anxious can feel challenging to those carrying them out5 17 . There may not be time during a standard-length appointment to support someone with learning disabilities to have a sight test. There are also barriers that are related to the lack of awareness and knowledge of eye care professionals, including:
- a lack of experience in interacting with people with learning disabilities can make eye care professionals unconfident or unwilling to treat them - sight testing people with learning disabilities may only be about 1% of an optometrist’s workload
- a lack of flagging on a person’s health records may mean that eye care professionals are unprepared when someone with learning disabilities arrives for an appointment
- many eye care professionals may not be aware of the easy-read information and other resources that could help them provide appropriate support for people with learning disabilities
- eye care professionals may need learning disability awareness training to help them gain the skills they need to provide better support to people with learning disabilities and knowledge of the reasonable adjustments that could be made to their services to make them accessible for people with learning disabilities
10.2 Individual characteristics
There may be cognitive, physical and behavioural difficulties that impact on a person’s ability to cope with an eyesight test or treatment for eyesight problems. These can include:
- not being able to recognise that they have problems with their vision or that their glasses are not the right prescription17
- not being able to communicate that they have eyesight problems7
- not understanding what is going to happen in a sight test
- limited communication making a sight test more difficult to undertake, for example finding it difficult to follow instructions
- struggling with an unfamiliar, busy environment
- not having the necessary literacy skills required for the standard assessments
- some specific aspects of a sight test may be problematic, such as eye drops, puffs of air for eye pressures and bright lights1
- not understanding the results of an eye test and what they are supposed to do next
- finding it difficult to get used to a new prescription or understanding when they should wear their glasses
Quality checking eye care
Speakeasy NOW is a self-advocacy group for people with a learning disability who live in Worcestershire. Their work includes a Health Checkers Project which is about people with learning disabilities assessing the health services that people receive, and the group has already looked at dentists, hospitals and GPs.
Gail Greer, of Speakeasy NOW reports on their recent work with looking at eye care:
We visited 12 local high street opticians plus the 3 specialist ophthalmology departments in Worcestershire hospitals. We spoke to a number of groups and individuals to gather their stories and experiences.
We found there was no easy-read information used by opticians and they weren’t aware these were available on the SeeAbility website. Opticians also tended to rely on online systems for feedback or booking home visits, that might not be accessible to most people with learning disabilities. There was a general willingness to make adjustments for people with learning disabilities if required and we heard good examples. All premises were wheelchair accessible but some had very little room for manoeuvre.
Visit Speakeasy NOW website
10.3 Factors impacting on access to sight tests and treatment
There are practical factors that may affect someone’s ability to attend eye care appointments or get the treatment they need. These include11:
- transport difficulties in getting to an appointment, such as a lack of public transport or lack of nearby parking
- premises that are not accessible to people in wheelchairs or with mobility problems
- poorly adapted testing methods, for example not using accessible tests (such as only using letter vision tests, and not having picture or grating tests available)
- lack of time – additional time may be needed to help someone understand what is happening, feel relaxed and to complete the assessments
- lack of referral to appropriate services due to their learning disability
- online booking systems that people may struggle to access or use
- having the necessary support to attend the appointment
- concerns about the cost of an eye test or glasses and problems understanding eligibility for optical vouchers
- difficulties with fitting glasses for people with learning disabilities - they may need adjustments to fit special facial characteristics, hearing aids or wheelchair headrests
- concerns from eye care professionals that the practice will not be paid for doing the test if they are unable to complete all aspects of the testing required under the NHS contract
- opticians may feel there are structural issues about the way they are reimbursed for sight tests that result in unintended disincentives for them to treat people who may require additional time
10.4 Consent and capacity
If there are doubts that a person can consent to a sight test or other treatment this can be seen incorrectly as reason not to proceed. Lacking capacity to consent should not be barrier to treatment or testing. In these cases, the Mental Capacity Act guidance should be followed. An eye care professional should make a decision about eye care or treatment on behalf of the person with a learning disability if they are unable to make the decision themselves. Easy-read resources (section 13, table 3) can be used to help people with learning disabilities make informed decisions about their eye care. The Mental Capacity Act sets out the law regarding capacity and consent and is underpinned by 5 principles which must be considered when assessing capacity:
- assume a person has the capacity to make a decision themselves unless it’s proved otherwise
- wherever possible, support people to make their own decisions
- don’t assume a person lacks capacity because they make an unwise decision
- if an eye care professional makes a decision for a person who doesn’t have capacity to do this themselves, it must be in their best interests
- treatment and care provided to someone who lacks capacity should be the least restrictive of their basic rights and freedoms
11. Adjustments at an individual level
With the right support, no one is ‘too disabled’ to have a sight test; many of the barriers identified in the literature can be mitigated by good support and reasonable adjustments. Some reasonable adjustments are helpful for most people, for example, almost everyone with a learning disability says what helps them at a sight test is being given enough time5 17. It is important to remember that reasonable adjustments should be personalised and must consider the needs of the individual. The provision of easy-read information is a common reasonable adjustment, but this may not be helpful to someone who is unable to read at all. This next section looks as what can help support people with learning disabilities have sight tests and get treatment for eye problems. There are some examples of how this can be done.
11.1 Preparing the individual and the environment
Ideally it is best to put reasonable adjustments in place to try to support someone to be tested in a local, community service. Referrals to hospital eye service can take a long time and are likely to involve travel and waiting in a busy environment14. Many adults and children with learning disabilities who access hospital eye services could be seen by community optometry services. Making community eye care services more accessible will also help young people who are discharged from hospital eye services when they become adults. Many people who are discharged from hospital services are not successful in finding the community eye care they require19.
Sending easy-read information about what to expect in a sight test can help prepare a person for their visit. This should include details about the procedures and use of eye drops for example. For some people, it may also be helpful to offer a visit in advance where they can meet staff at the practice and look at the room and the equipment5. The accuracy of assessments may be improved if the visual acuity charts that will be used have been made available prior to the assessment. This can provide an opportunity for the person to practice naming matching symbols, for example.
It may also be useful for someone who knows the person well to have completed the Functional Vision Assessment tool for people with learning disabilities before the sight test. This tool is written in plain English and guides a carer through a checklist assessing different aspects of a person’s vision. This has the benefit of encouraging supporters to pay greater attention to observing the functional vision of the person they support, as well as providing useful information for the assessment visit5.
The room in which the testing takes place should be quiet and spacious – it may require additional room to accommodate a wheelchair or to be able to assess visualmotor or visual-vestibular skills5.
Below is an example of how a specific service has been set up to ensure that all the reasonable adjustments an individual needs are put in place.
In 2016, an NHS England funded specialist sight testing service for people with learning disabilities was established in Greater Manchester. The service is for children and adults who are known by their GP or local learning disability team as having a moderate or severe learning disability. Accredited optometrists across the 10 local authorities in Greater Manchester provide longer appointments with all the reasonable adjustments people need in place. The pre and post eye test forms created by SeeAbility are used to share information and report the outcome of the eye test in an accessible way.
Further information on how to access the service is available.
The approach of the clinician is a crucial factor. Communication problems are one of the major barriers to people with learning disabilities having thorough and effective assessments. It is important that clinicians take the time to get a general understanding of the preferred method of communication of the person they are examining5. This can help them to use appropriate language and suitable assessment techniques.
Communication can be helped by speaking directly to the person, using simple language and giving sufficient time for them to understand, and respond to, any questions. For people with more profound learning disabilities it may be necessary to work with a carer to understand the responses and to recognise if the person becomes distressed. Taking time to get to know the person will help the clinician understand any specific needs the person may have in order to help them co-operate with investigations or treatment.
Leanne is a young woman with Down’s syndrome and learning disabilities. She was denied life-changing cataract surgery for years and her deteriorating vision was a huge concern for her family. Eating and getting out in the community were getting difficult for her but doctors were concerned she wouldn’t be able to cope with the aftermath of surgery. SeeAbility supported her on hospital visits and worked with the Consultant Opthalmologist and the acute learning disability liaison nurse to put reasonable adjustments in place. This required good communication with other hospital professionals including the safeguarding team and the anaesthetist. The Consultant said that the most important factor was taking extra time to communicate with Leanne, her family and the wider hospital staff. This enabled them to find out what Leanne would struggle with and to think how to address this. For example, Leanne’s aftercare included a steroid injection to replace the need for regular eyedrops.
With the support of SeeAbility and hospital eye care professionals, Leanne’s life has been transformed and she is much more independent. Following the eye surgery Leanne’s quality of life and behavioral problems have also improved.
A film about Leanne’s story is available here.
11.3 Making modifications to the tests
Li and others (2015)5 reviewed the literature around assessment modifications. There is more detail in their research paper but in summary these are some of the changes that can be made when testing:
- visual acuity - if a person cannot read letters then they can be tested using letter or symbol charts, for example, Kay pictures. For people with moderate to severe learning disabilities there are simpler tests that can be used, such as Teller acuity cards, Lea paddles or the Cardiff Acuity Test
- visual fields - eye movements and someone turning their head toward peripheral targets may be indicative of the extent of the ‘useful field of view’ (UFOV). Modified confrontation testing should also be considered. This might mean using a colourful small object as a fixation target, while presenting a visual stimulus in the peripheral visual field
- refraction – clinicians should rely on retinoscopy in order to assess the extent of refractive error in people with more severe learning disabilities. This ‘requires clinical proficiency and an ability to rapidly evaluate a fleeting retinoscopic reflex’ (p. 424)
- ocular health assessment – some people with learning disabilities will not be able to sit near fixed equipment for an examination. Therefore, there is a need for robust portable equipment, including a portable slitlamp and a binocular indirect ophthalmoscope
Below is an example from an optometrist of how she adapts her assessments and some of the strategies she uses to help people feel more relaxed.
Lisa is an optometrist who works for SeeAbility, providing sight tests in special schools. Lisa regularly tests children with profound and complex needs, such as Karen. Karen has a genetic condition called Cri du Chat syndrome that means she needs a wheelchair and has limited movements. She doesn’t talk and isn’t able to tell people if her vision is blurred. Karen communicates through eye pointing so clear vision is vital for her. Before Karen had an eye test via SeeAbility at her special school, no one knew that she needed glasses.
When a child is unable to sign or communicate, I use a number of techniques to find out what they can see and how well they can focus. This involves observing how they use their vision – Can they track a moving object? Do they notice objects in their peripheral vision? Can they distinguish pictures and colours on some of the materials we use?
We don’t need to be in a completely dark room, to use letter charts and for someone to sit still in a chair, for example.
I can get a look at how well a person might be focussing from a distance using my retinoscope.
Having someone present who is familiar with the person and learning more about what makes the person feel comfortable is important. It might be music or a favourite toy or object. Demonstrating and explaining everything I am going to do before I try to do it often really helps too.
And of course, it helps that school is a familiar place for the children we test. We can use the cosy corner of the school room for example.
The Bradford Royal Infirmary case study has identified a list of possible reasonable adjustments to help people access good hospital eye clinic care.
12. Adjustments at a service level
Reasonable adjustments can be put in place to meet individual need, but they may also relate to changes to policies, procedures and staff roles to ensure services work equally well for people with learning disabilities.
12.1 Training and awareness raising
Research has emphasised the benefits for eye care professionals of receiving training about working with people with learning disabilities5 17. The importance of learning disability awareness training for mainstream healthcare staff has been recognised by the government. It has been suggested that a lack of skills and knowledge about supporting people who have learning disabilities is a contributory factor to the inequality of life expectancy between people with learning disabilities and the wider population.
Audits of annual health checks for people with learning disabilities in one area prompted concerns that they were not accessing sight tests. A pilot project was initiated to address this. Central to their intervention was offering training to11:
- optometrists and opticians – this was a 3-hour evening session focussing on common eye conditions, communicating with people with learning disabilities, the barriers they face and strategies for engaging them
- carers and health and social care professionals – the training centred on the importance and relevance of eye tests to health and the impact of problems on peoples’ quality of life
- people with learning disabilities – a workshop was devised to help enable them to learn about eye care and find out more about how tests can be done using pictures and objects
Preliminary results of the evaluation suggested that there had been some improvements locally in terms of increasing numbers of people with learning disabilities having an eye test and being prescribed glasses for the first time. There was some indication that this was leading to a decrease in behavioural problems for individuals. The team concluded that it is necessary to work with a range of stakeholders in order to achieve positive outcomes.
Another evaluation of vision awareness training for health and social care professionals working with people with learning disabilities showed the training led to significant increases in knowledge around7:
- the greater risk of eye problems in this cohort
- the specific range of vision problems experienced more commonly by people with learning disabilities
- signs of sight loss
- confidence in recommending eye test referrals
- sources of reliable information about sight loss
This research study concluded that health and social care professionals who work within learning disability services can significantly benefit from additional awareness training on the vision health needs of those they support. There is also evidence that advice on the types of reasonable adjustments that can be made would be useful. For example, there appears to be low awareness of the possibility of home visits for disabled people20.
12.2 Access to sight tests and treatment
Many of the practical factors described in section 10.3 can be addressed through the implementation of personalised reasonable adjustments. Others require changes in systems and structures.
Whilst training can help eye care professionals think about the reasonable adjustments that an individual may find beneficial, such adjustments cannot be put in place in advance if it is not known that an individual has learning disabilities. Adequate flagging systems (for people requiring sight tests or diabetic retinopathy screening) can help staff be prepared and gives an opportunity for reasonable adjustments, such as the use of easy-read information and longer appointments to be put in place18.
Recently NHS England has issued guidance to help address some concerns about reimbursement for eye tests for people with learning disabilities. This includes allowing a practice to claim a sight test fee if they have made reasonable attempts to undertake the test.
The community Eye Care Pathway case study is an example of the development of a specialist care pathway to allow people with learning disabilities to access services and receive equality of care.
The adults with learning disabilities in South Devon case study is a pilot study in Torbay which explored whether people with learning disabilities were accessing the eye care they needed.
It is important that the Equality Act is adhered to and that people with learning disabilities are not discriminated against, irrespective of where they are seen. Concerns about the cost of glasses is a known barrier. An optometrist who worked in both hospital and community settings noticed a disparity between the 2 settings for the costs for glasses and challenged this:
Simon Berry has been a qualified optometrist for 20 years. He also blogs for the Down’s Syndrome Association for its vision month, to help parents understand more about eye examinations and frame fitting. Simon says:
I started my pre-registration at Sunderland Eye Infirmary and still work 2 sessions a week as a specialist optometrist. I set up my own optometric practice in Durham in 2002. Our practice has tried to specialise in children’s eye care but we also see adults with learning disabilities. I publicise my service on the SeeAbility website.
Working in the 2 environments of hospital and community practice can also mean you notice where things are going wrong for people with learning disabilities. I questioned why people were able to have frames for special facial characteristics under the hospital voucher system, but not under GOS.
This was an obvious inequality that affects people with learning disabilities from conveniently accessing the frames they needed. At first there was some reluctance at NHS England but we persisted and brought others on board with the campaign, including our local MP, SeeAbility and the Down’s Syndrome Association and are pleased to say the rules have now been changed.
Work is continuing in Durham to improve eye care locally for people with learning disabilities and further information can be found here.
12.3 Partnership working
Partnership working between mainstream health services, specialist learning disability teams and family carers or paid supporters of individuals can improve access to healthcare for people with learning disabilities. Pilling (2014)14 notes the benefits for eye care professionals of involving the community learning disability team in planning and attending diabetic retinopathy screening appointments.
The Bradford District Care Trust and Bradford Teaching Hospitals case study is an example of how community and hospital services can work together to improve patient care.
Only resources that are free to download have been included, although some of the websites may also include resources that are available to buy.
13.1 Resources for family carers or health and social care professionals
The SeeAbility website has resources suitable for use by carers, supporters and learning disability professionals including database of optometrists and dispensing opticians and a Functional vision assessment tool.
The RNIB website has resources including training packs and reports.
‘How social care staff can support people with learning disabilities to look after their eyes, teeth and ears’ is a short information sheet aimed at social care staff looking after eyes.
How social care staff can support people with learning disabilities to take part in screening programmes is a short information sheet aimed at social care staff with information about screening programmes, including diabetic retinopathy.
The Understanding the eye care and vision needs of pupils with special educational needs and disabilities guide is for teaching and support staff, SENCOs, therapists and health staff from mainstream and special schools.
Eye Health UK has resources including patient information leaflets, clinical fact sheets, posters and template press releases. These are not in an easy-read format but may be helpful for carers and paid supporters.
Resources from Moorfields Eye Hospital about a wide range of eye conditions are not in an easy-read format but may be helpful for carers and paid supporters.
13.2 Resources for eye care professionals
General information for eye care professionals including easy-read information the optometrist can give out as well as a form to use to provide easy-read feedback following an eye test.
A guide to help make optometry practice more accessible for people with disabilities.
Evidence on the need for national change to improve eye care for people with learning disabilities.
Diabetic retinopathy pathway for people with learning disabilities Screening Liaison Nurses for adults with a learning disability Cornwall Foundation Trust, Cornwall.
Guidance for optometrists about how to use tests and procedures that are appropriate to the needs of patients with learning disabilities.
Guidance about working and communicating with patients with learning disabilities and their carers includes training videos and links to further resources.
Guidance and support for ophthalmologists to enable them to provide insightful and quality treatment to patients with learning disabilities.
A self-assessment tool to support the provision of services for people with learning disabilities within community optometry. Visual Symptoms in Learning Disability (VSLD) 10 item questionnaire
An article presenting case studies of how the Visual Symptoms in Learning Disability (VSLD) questionnaire was used and validated.
Links to information about 6 areas of the country where SeeAbility has worked with local eye care services and the Local Optical Committee Support Unit (LOCSU) to improve access for people with moderate and severe learning disabilities.
13.3 Easy-read and accessible resources
A collection of SeeAbility’s easy-read eye care factsheets and forms. The topics covered include eye test forms, vision awareness, eye-test resources, wearing glasses and getting the right support.
Information from SeeAbility specific to eye tests including videos on why they are needed and how to prepare. One video uses Makaton.
An easy-read guide about diabetic eye screening for people who have diabetes and are aged 12 or older.
What is diabetic eye screening? Information about diabetic eye screening and a video showing what it involves.
Easy-read leaflet about diabetic retinopathy and why it is important that people who have diabetes are screened.
A short film about the work Future Directions are doing with SeeAbility to provide training about eye care to members of their ‘Supporting People into Community Employment’ group.
13.4 Free Apps to help people with eyesight problems
For Android devices
Giant Clock A clock with customizable display, the text and background colours can be changed as needed
Magnifying Glass allows phone to be used to magnify
Bluelight filter - Eye Care helps to reduce eye strain by reducing the amount of blue light eyes receive from devices
For Apple devices
Be My Eyes helps assist blind people with important, everyday tasks like reading labels, receipts and those really-hard-to-see product expiration dates. Can be used by supporters or individuals who can sign up to be assisted if they are vision impaired
Magnifying Glass with light can be used to magnify and light up small font
Hatton C, Glover G, Emerson E, Brown I. (2016) People with learning disabilities in England 2015. Public Health England ↩
McCullough S, O’Donoghue L and Saunders K (2016) Six Year Refractive Change among White Children and Young Adults: Evidence for Significant Increase in Myopia among White UK Children PLoS ONE, 11(1) ↩
Li JCH, Wong K, Park ASY, Fricke TR, Jackson AJ (2015) The challenges of providing eye care for adults with intellectual disabilities. Clinical and Experimental Optometry, 98(5), 420 to 429 ↩ ↩2 ↩3 ↩4 ↩5 ↩6 ↩7 ↩8 ↩9 ↩10 ↩11 ↩12
Zahidi AAA, Vinuela-Navarro V, Woodhouse JM. (2018) Different visual development: norms for visual acuity in children with Down’s syndrome. Clinical and Experimental Optometry, 101(4), 535 to 540 ↩
Dick J, Finlayson J, Neil J, Mitchell L, Robinson N (2015) Vision awareness training for health and social care professionals working with people with intellectual disabilities: Post-training outcomes. British Journal of Visual Impairment, 33(3), 227 to 238 ↩ ↩2 ↩3 ↩4
Kinnear D, Morrison J, Allan L, Henderson A, Smiley E, Cooper SA (2018) [Prevalence of physical conditions and multimorbidity in a cohort of adults with intellectual disabilities with and without Down syndrome: cross sectional study](8:e018292. doi:10.1136/ bmjopen-2017-018292. BMJ ↩
Van Splunder J, Stilma J, Bernsen R and others (2005) Prevalence of visual impairment in adults with intellectual disabilities in the Netherlands: cross sectional study (2006) Eye, 20, 1004 to 1010 ↩
SeeAbility (2015) LOCSU Learning Disabilities Eye Care Pathway: London pilot ↩
Donaldson LA, Karas M, O’Brien D and Woodhouse JM (2019) Findings from an opt-in eye examination service in English special schools. Is vision screening effective for this population? PLoS ONE 14(3) ↩
Evenhuis HM, Sjoukes L, Koot HM, Kooijmanet AC (2009) Does visual impairment lead to additional disability in adults with intellectual disabilities? Journal of Intellectual Disability Research, 53(1), 19 to 28 ↩
Desrochers MN, Oshlag R and Kennelly AM (2014) Using background music to reduce problem behavior during assessment with an adolescent who is blind with multiple disabilities. Journal of Visual Impairment & Blindness, 108(1), 61 ↩
Pilling R (2015) Screening for diabetic retinopathy in adults with learning disability: current uptake and adjustments to facilitate equality of access. British Journal of Learning Disabilities, 43(1), 62 to 65 ↩ ↩2
Hancock B, Shah R, Edgar DF, Bowen M (2015) A proposal for a UK Dementia Eye Care Pathway. Optometry in Practice, 16(2), 71 to 76 ↩