SIGHT PROBLEMS AND PEOPLE WITH INTELLECTUAL DISABILITIES
Laura Waite (UK)

Multiple Disability Service

RNIB'sta Multiple Disability Service is an information and practice development service for adults with disabilities who have issues relating to their sight. The service is targeted at the individuals with disabilities themselves and those who are in any way involved in their support.

The service aims to:

• respond to individual requests for information, on a wide range of topics
• produce fact sheets in a variety of user friendly format
• campaign to increase access to eye care and hearing care
• put people in touch with others doing similar work
• generate a newsletter for people involved with individuals with intellectual and visual disabilities

The Multiple Disability Service forms part of RNIB's Practice Support Team and collectively they seek to improve the quality of support offered to adults with disabilities by statutory services and the private and voluntary sector.

How to contact the Royal National Institue for the Blind

RNIB
Multiple Disability Service
224 Great Portland Street
London
W1W 5AA

Telephone: 020 7388 1266
Fax: 020 7388 3160

www.rnib.org.uk
www.rnib.org.uk/multdis

Introduction

Sight is key to communication, learning and movement. It co-ordinates other senses and helps people to understand what they have heard, touched, tasted or smelled. The more people can see, the easier it is for them to make sense of the environment around them.

Research demonstrates that people with intellectual disabilities are at higher risk of experiencing sight problems and while this information is slowly being filtered through to service providers and carers, there are still many people not receiving regular eye checks or appropriate help for an eye condition.

When people are not in possession of the necessary communication skills to verbalise to another that their eyes 'don't seem right' then there are many alternative ways that they may convey this, for example light gazing, adopting unusual head positions or avoiding tasks that involve close work.

Ignoring eye problems could be seen as a subtle form of oppression as it disempowers people. If our aim is to support people with intellectual disabilities to have as much independence and control over their own lives then it is paramount that we establish what they can see.

This web page aims to supply you with information about who is most at risk of having sight problems within the intellectually disabled population, how you can identify a sight problem and what you could do to help someone.

People with an intellectual disability who are most at risk of sight problems

The fact that someone has a learning disability automatically increases his/her chance of experiencing a sight problem. However, there are specific groups of people within the intellectually disabled population who are particularly at risk of developing certain sight problems:

People with Down's syndrome often experience:

• Refractive errors (the overall term used for conditions which affect focusing):
  
  
  • Hypermetropia - long-sightedness
  • Myopia - short-sightedness
  • Astigmatism - when the curve of the cornea is not symmetrical
    
    
• Nystagmus - an involuntary movement of the eyes
  
• Strabismus - squintsCataracts - a clouding of the lens
• Eye infections
• Keratoconus - a condition where the cornea stretches causing the tissue to thin and the centre to bulge

People with cerebral palsy often experience:

• Optic atrophy - damage to the optic nerve which is responsible for transporting visual information to the brain
• Cortical blindness - sight problems (not necessarily a total loss) that are as a result of damage to the part of the brain that processes visual information
• Nystagmus - an involuntary movement of the eyes

People with Rubella syndrome often experience:

People with rubella syndrome often experience:

• Congenital cataracts - clouding of the lens
• Microphthalmos - small underdeveloped eyes
• Inflammation of the iris (the coloured part of the eye)

People with Fragile X syndrome often experience:

• Hypermetropia - long-sightedness
• Strabismus - squints

People who communicate using behaviours that put their eyes at risk of damage:

For example:

• People who bang their head or face slap
• People who eye poke or eye rub
  
  

Older people often experience:

• Presbyopia - age related long-sightedness
  
• Difficulties with light/dark adaptation
• Age related macular degeneration - damage to the macular which is the part of the retina responsible for central vision; the vision needed for detailed activities and colour perception.
• Cataracts - clouding of the lens
• Glaucoma - caused by raised pressure in the eye

People from different ethnic origins may experience:

• Glaucoma - more prevalent amongst Afro-Caribbean and Asian people
• Sickle cell disease - this disease can cause problems in the retina and is more prevalent amongst Afro-Caribbean and Asian people
• Lupus - this disease can cause light sensitivity and is more prevalent amongst Afro-Caribbean and Asian women
• CMV retinitis - this is an eye infection affecting people with AIDS and is more prevalent amongst African people

People with diabetes often experience:

• Cataracts - clouding of the lens
• Temporary blurring - when a person develops diabetes they may have a period of blurred vision until the diabetes is under control
• Diabetic retinopathy - this is a condition that affects the blood vessels in the retina and can affect vision in a number of ways.
  

Identifying an eye problem

It is a commonly held myth that people can only have an eye test if they can read or talk. However, optometrists have been testing babies and small children for years. Simple observations by people who support an individual with an intellectual disability along with some patience and imagination from an optometrist can uncover a serious sight problem that can be successfully treated.

In some geographical areas 'specialist' vision services for people with intellectual disabilities may have been set up so it is worth finding out if there is one available in your local area.

Observations

A lot of information can be gathered initially through observing the individual, in terms of the appearance of their eyes and the way in which they interact with people, objects and their environment. It must be taken into account however, that when carrying out any observations many factors will affect a person's vision, for example the time of day, medication etc.

Appearance of eyes:

• No eyes at all
• Very small eyes
• Closed or partially closed eyes
• In-growing eyelashes
• Red eyes
• Eyes without a pupil - the round black central part
• Pupils which are 'off centre'
• Pupils that seem distorted or incomplete
• Eyes which look 'milky'
• Eyes which appear to 'rove' or constantly move
• Eyes which bulge, seem pointed or have an unusual shape
• Eyes which seem scarred or damaged
• Frequent eye infections or sticky eyes
• Frequent cysts or styes on the eye-lids
• One eye turning in or out - squinting
• Very fast eye movements - side to side, up or down
• 'Unusual' eye movements
• Watery eyes

Behaviour

• Frequent touching of eyes - for example poking or rubbing
• 'Light gazing' - appears fascinated by light
• 'Finger flapping' - enjoys flapping hand in front of eyes
• 'Unusual' head positions
• Moves head but not eyes to look at things
• Unusual head movements - for example, frequent head shaking
• 'Head rolling' - circular movement of head
• Puts hand over one eye
• Constant frowning
• Constant blinking
• Blinks at bright lights
• Avoids bright lights
• Avoids close work
• Draws very small pictures
• Draws very large pictures
• Seems to see some colours better than others
• Obvious problems in focusing
• Short attention span
• Poor self-care skills
• Poor communication skills
• Dramatic changes in behaviour - may become upset or anxious for no apparent reason
• Body rigidity - seldom seems relaxed
• Startled by noises

Responses to other people:

• Does not seem to recognise people - unless spoken to
• Does not make eye contact
• Peers at people
• Jumpy when approached without being warned
• Lack of regard for other people, environment etc
• Sees people wearing bright colours better
• Sees people some of the time, for example, when they wear certain colours.

Responses to objects:

• Closely examines objects
• Peers at objects
• Moves objects towards light
• Prefers object to be placed in a particular position - for example, on one side or the other, near, far etc.
• Preference for bright objects
• Sees bright objects on colour-contrasting backgrounds better- for example, a red plate on a white tablecloth
• Appears to see moving objects better than things that stay still.

Movement:

• Crashes into objects - such as doors, furniture
• Is anxious or unwilling to walk alone
• Finds it difficult to judge distances
• Seems clumsy and uncoordinated
• Walks better in well-lit areas
• Walks better in twilight-type lighting
• Finds it difficult to cope with changes in the environment
• Walks confidently indoors but reluctant to walk outdoors
• Constant looking down - for example for steps
• Feels their way around - for example, sliding feet to find steps
• Becomes confused/disorientated or becomes lost

For further information, please refer to RNIB's Focus Factsheet: 'Looking for eye problems in people with learning difficulties'.

Preparing for a sight test

For people who have difficulty understanding activity outside of their routine, sight testing can be a very scary experience. It may involve visiting an unfamiliar place, the use of complicated equipment, a stranger invading their personal space and the need for them to sit in the dark. Much anxiety however, can be reduced if those involved do some careful planning. Things that should be considered:

Who is going to support the individual during the appointment?

The key to a successful appointment often rests with the person who goes with the individual. It is paramount that they know the individual well and has an understanding of their communication needs and how they are best met. They also need to know such things as what might make the person anxious.

Medical information

It is important that information is gathered together prior to the appointment and should include details such as:

• Does the person have any historical eye problems?
• How does the eye problem affect them?
• Is there a family history of eye problems?
• What is the cause of intellectual disability?
• Does the person have any medical condition, for example diabetes, sickle cell anaemia?
• Does the person take any regular medication?
• Does the person wear glasses, if so what for?
• Has the person ever had eye surgery, if so what for?
• Does the person engage in behaviour that may put their eyes at risk?

Visiting the place where the assessment will be carried out

Opticians/Ophthalmology departments can be quite daunting environments. It can be very useful for an individual with intellectual disabilities to visit so that they can familiarise themselves with the surroundings and any equipment that may be used.

Meeting the ophthalmic professionals

It can be helpful for many people with intellectual disabilities to meet the professionals who will be involved in their vision assessment beforehand. This may include the receptionist in the opticians, an optometrist, an orthoptist, a rehabilitation worker, etc. It will also be beneficial if these professionals have information about the individual prior to the assessment and that some agreements are made about how the assessment should be carried out so that it minimises anxiety. For example, ensuring that the person does not have to wait in the waiting room for longer than five minutes, or being able to have a cup of tea during the appointment.

Sight testing

Medical History:

This is to establish:

• If there are any hereditary eye problems;
• If there has been any recurrent problems;
• If there are any issues that puts the individual at higher risk of a sight problem;
• If the person has any medical condition, for example diabetes, sickle cell anaemia;
• If the person takes any regular medication;
• If the person has ever had eye surgery;

What might be involved:

• A pre-appointment questionnaire;
• An 'interview' with the individual and their supporter at the beginning of the appointment.
  

Eye Health:

This is to establish:

• That both eyes are working together;
• That the health of the inside and outside of the eye is ok;
• That the eye pressure is normal.

What might be involved:

• The insertion of eye drops to have the back of the eye examined;
• A puff of air to check eye pressure (tonometry);
• A light shone in the eye and the request to look forward, up, down, right, left and to track.

Visual Field:

This is to establish:

• That there is no loss of sight on either side;
• That there is no central loss;
• That there is no tunnel vision;
• That there is no patchy vision.

What might be involved:

• Looking at a central dot of light and asked to count the dots around it;
• Moving an object from behind into the field of vision until the individual has become aware of it.

Visual Acuity:

This is to establish:

• The level of vision.

What might be involved:

• Reading a Snellen chart (chart of letters);
• Naming letters from a single book of letters;
• Identifying pictures from the Kay Picture Test (single line drawings)
• Identifying objects from the Sheridan Gardiner Miniature Toys Test
• Cardiff Acuity Test (preferential looking)

Functional Vision:

This assessment is ideally done within the individual's regular environments, such as home or their day service and is usually carried out by a social service rehabilitation worker for visually impaired.

This is to establish:

• The person's ability to use their vision for their everyday needs

What might be involved:

• Colour perception: Identification; Colour blindness; Contrasts
• Tracking
• Visual attention
• Head position for best vision
• Lighting: task and ambient
• Objects: mobility and location
• Ability to adjust to light changes

For further information, please refer to RNIB's Focus Factsheet: 'How to get the best out of sight testing for adults with learning disabilities', 'Questions to ask the optometrist after the eye test of an adult with learning difficulties' and 'Obtaining services for people who have sight problems and additional needs'.

Ways of supporting someone with intellectual disabilities who has sight problems

Assistance with a sight problem may include medical intervention or specialist equipment. However, simple changes in our behaviour or in the environment can be the most affective and cost nothing.

The following are some of the things that may be considered in the treatment of an eye condition:

Glasses

It is often believed that people with intellectual disabilities will automatically reject glasses. Yet many people have benefited from carefully prescribed and chosen glasses. Glasses should be introduced in a planned way and involve the individual wearing them for motivating activities (that are obviously appropriate to the function of the glasses, e.g. near vision) and should always be clean.

For further information, please refer to RNIB's Focus Factsheet: 'Glasses for adults with severe learning difficulties' and 'Making sense of prescriptions for spectacles'.

Surgery

Many people wrongly believe that eye surgery requires long periods of in-patient treatment, which is rarely the case. Some eye surgery can be carried out under local anaesthetic and be completed in a day, although this is subject to local variations and surgeons. With a multi-disciplinary approach and detailed planning, surgery can prevent deterioration of an eye condition and improve a person's quality of life. It should also be remembered that Government publications state that no one should be offered less favourable treatment because he/she has a disability.

For further information, please refer to RNIB's Focus Factsheet: 'Minimising problems in eye surgery for adults with severe learning disabilities' and 'Eye surgery support plan'.

Drops

Due to the increased risk of eye infections amongst certain groups of people with intellectual disabilities, it is common for them to be prescribed drops. Eye drops are also often required following eye surgery so it is worth including this in any plans for preparing the person. Preparation for eye drops can be done using a simple saline solution, which can be obtained from a GP or chemist. People also find eye drop dispensers very helpful and allow some individuals to insert their own drops.

For further information, please refer to RNIB's Focus Factsheet: 'Eye drops for adults with learning difficulties'.

Adapting the environment

If a person with intellectual disabilities is identified as having a sight problem they will require adaptations to their environments in order that they make best use of their residual sight. This area is usually tied in with a 'functional assessment of vision' (outlined above) and the local Rehabilitation Officer should be able to advise on this. Alternatively advice can often be sought from a local society for visually impaired people. Following a functional assessment, recommendations for environmental adaptations should be given on areas such as where to position objects, what lighting to use, and what are useful colour contrasts to maximise sight.

For further information, please refer to RNIB's Focus Factsheet: 'Improving environments for people with visual and learning disabilities'.

Registration

Each local authority in the United Kingdom keeps a register of blind and partially sighted people living in their area which is usually held by the social services department or the local voluntary society for visually impaired. The purpose of the register is to help local authorities provide the best service they can for people with sight problems but it can also act as a 'passport' to services, concessions and benefits.

To register, the person has to be certified blind or partially sighted by a consultant ophthalmologist. If the person is not attending an eye hospital/clinic then their GP should be asked to make a referral. If the person meets the criteria for registration a BD8 certificate (BP1 in Scotland, A655 in Northern Ireland) will be issued, a copy of which will be sent to social services and the Office of National Statistics. Someone from social services should then make contact to discuss the persons needs.

Conclusion

Given the incidence of sight problems amongst people with a intellectual disability it is paramount that:

• All those involved in the support of someone with intellectual disabilities are aware of the increased risk of sight problems.
• All those involved in the support of someone with an intellectual disability know how to access eye checks in their local area.
• All people with intellectual disabilities obtain regular eye checks
  (RNIB advises annual checks).
• All those involved in the support of a person with intellectual disabilities who has a sight problem should know the details of the condition.
• All those involved in the support of a person with intellectual disabilities should have an understanding of how they can adapt the environment and their own behaviour to meet the individual's visual needs.
  
• All those involved in the support of a person with intellectual disabilities know how to use and maintain any specialist equipment (e.g. people know what tasks a specific pair of glasses should be used for).
  

Further reading from RNIB's Focus Factsheet range

Sight issues:

• Access to eye care for adults with intellectual difficulties
• Looking for eye problems in people with intellectual difficulties
• How to get the best out of sight testing of adults with intellectual disabilities and/or no obvious means of communication
• Glasses for adults with severe intellectual difficulties
• Questions to ask the optometrist after the eye test of an adult with intellectual difficulties or who has no obvious means of communication
• Minimising problems in eye surgery for adults with severe intellectual difficulties
• Low vision services for adults with intellectual difficulties
• The role of rehabilitation workers for visually impaired people
• Understanding and using sight: issues for work with people with severe disabilities
• Hints on teaching skills to people with visual and intellectual disabilities
• Guiding blind people who are wheelchair users
• Challenging behaviour in visually and intellectual disabled adults
• Stereotypical behaviour in people with visual and intellectual disabilities
• Improving environments for people with visual and intellectual disabilities.
• Planning individual leisure activities for adults with visual and intellectual disabilities
• Encouraging and developing early communication skills in adults with multiple disabilities
• Eye drops for adults with intellectual difficulties
• Making sense of prescriptions for spectacles
• People with Down's syndrome and their eyes
• Focus Catalogue - lists all articles and features form past editions of Focus newsletter

Hearing issues:

• Looking for hearing problems in people with intellectual disabilities
• Making the most of hearing assessment and ENT referral for adults with intellectual disabilities
• The effects of hearing problems for people with intellectual disabilities
• Ways to help a intellectual disabled person with a hearing difficulty
• Getting the information you need from a hearing assessment (available shortly)
• Hearing aids and environmental equipment for intellectually disabled people (available shortly)
• People with Down's syndrome and their ears

FOCUS NEWSLETTER

Focus is a newsletter produced by RNIB Multiple Disability Service. It is written for people involved in the support of adults with visual and intellectual disabilities. If you would like a sample copy, please contact:

The Multiple Disability Service at RNIB on +44 (0)20 7388 1266.

Rebus & PCS symbols used with kind permission from Widgit Software Ltd, Tel: +44 (0)1906 885303

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