Publications Archive

Visability, Summer 1998, 23

Summary: For parents and professionals concerned with education of children with impaired vision

For parents and professionals concerned with the education of children with impaired vision

Editor: Karen Porter

Visability is published termly by RNIB Education Information Service.

The views expressed by contributors may not be those of RNIB.

ISSN 0961-9879

Focus on: Eye conditions

Editorial

Welcome to the Summer edition of Visability. Due to popular demand this issue focuses on eye conditions. Parents Yvonne Booth, Chris Timmis and Peter Attenborough offer their own perspectives on how aniridia, ocular albinism and coloboma affect their children. Claire Entwistle of the Nystagmus Network looks at how pupil Sam Jones deals with his nystagmus in the school environment.

From an ophthalmologist's perspective, Chris Lloyd outlines the causes and treatment of childhood cataract. Prue Dobinson explains the role of an orthoptist and reports on a recent Low Vision Awareness Day.

If you are thinking about investing in a new scanner, our technology article presents an overview of different systems and makes some recommendations. As more and more emphasis is placed on including visually impaired children in mainstream schools, this issue also features the first of a new regular column on inclusion matters.

The autumn edition will focus on further and higher education. Please contact me if you would like to contribute something on this or other topics.

Karen Porter, Editor

Viewpoint – Where you have your say

Literacy for all?

Reading is about receiving information in variety of forms, and can include listening to tapes and reading braille...

Reading is one of the fundamental blocks of learning.., enhances the chances of success at school and beyond...it's for life.

Just one of the descriptions of literacy arising from the National Literacy Strategy (NLS) and the National Year of Reading. Encouragingly it recoguises two of the literacy media used by visually impaired children. But are all the literacy initiatives truly inclusive of the needs of blind and partially sighted children? The NLS framework for teaching is based on three key assumptions:

  • that literacy standards need to be raised;
  • that on entering school, children are ready to learn how sounds are represehted by letters and to develop their appreciation of books of many kinds; and
  • that children are able to work independently and without supervision during part of literacy hour while the class teacher works with another small group.

What do these assumptions mean for visually impaired children? To ensure that literacy standards are improved we first need to establish the current literacy standards of visually impaired children. How do they compare with those of their sighted peers? An analysis of the Qualifications and Curriculum Authority (QCA) data relating to visually impaired children who use modified papers at Key Stage 2 would give part of the picture. But what about all the visually impaired children who use standard print? We need to establish a baseline for them too.

Whilst many children with impaired vision are at Level 1 at school entry not all of them are. The framework has yet to take account of children who have not come to an understanding that one object or shape can symbolise another. There will be many children with special needs for whom this is true. Which brings us to the third assumption, that the framework does not take into account the additional intervention, support and supervision required by many children.

So what do we do? Despite its seeming imperfections with regard to special needs the National Year of Reading and the £50 million National Literacy Strategy present the visual impairment education field with numerous opportunities to improve literacy standards and access to literacy materials for visually impaired children. The Department for Education and Employment will provide £750,000 pump- priming to support selected literacy projects. Specific funding priorities include people with sight difficulties, encouraging young adults, and the imaginative use of IT to promote literacy.

The challenge is to identify the actions needed to ensure that visually impaired children are included in the literacy initiatives and to maximise the opportunities to raise literacy standards.

What is the best way to use literacy hour? What are the best approaches to teaching the additional skills many visually impaired children need to become fluent readers and writers?

For example how should children be taught

  • to use Low Vision Aids?
  • ICT and keyboard skills?
  • how to study using audio sources?
  • the prerequisite skills for braille?

How can we guarantee children a Low Vision Assessment and an assessment of the Information and Communications Technology they need to access the written word?

How can parents be enabled to support the development of their visually impaired child's literacy skills?

You will have views on these and the many other questions raised by- government literacy initiatives, not just for visually impaired children in mainstream but for those with multiple disabilities too. A widespread consultation is planned later this term. We want to bring together the views on literacy of LEA visual impairment services, teachers in mainstream schools and those working in SLD schools and schools for visually impaired children, as well as voluntary organisations. A coordinated consideration will ensure the best possible response to government initiatives on literacy, and maximise the opportunities to raise literacy standards amongst visually impaired children and improve their access to literacy materials. Please make your views and those of the visually impaired children you work with known.

Mary McDonald, Policy Officer

News

Have a go day!

RNIB New College Worcester recently hosted a 'Have a go day'. It was held on Saturday 28 February and was open to any visually impaired youngsters aged 8 to 16 years to come and have a go at activities on offer. These included canoeing, orienteering, scientific experiments, information technology, living skills, languages, tandem cycling and arts and crafts. Many of the young people had not experienced activities like this before.

It was a fun day with 68 visitors who thoroughly enjoyed the experience. As a reminder of the day each participant was given a bright yellow 'Have a go day' t-shirt! We are hoping to make this an annual event, so if you came this year make sure you return, but if you missed this event, watch this space for details of the next 'Have a go day' and come and join in the fun.

Video for visually impaired learners

The increasing use of moving images in teaching is making life tougher for visually impaired students. The Scottish Sensory Centre and University of Birmingham have collaborated to produce an information pack that looks at making television, video, multimedia and the image rich internet work for blind and partially sighted pupils and students. This is available on the world wide web at: www.ssc.mhie.ac.uk/VI_Video/welcome.htm or for those without internet access, a CD-Rom version is available for £20 from Marianna Buultjens, Scottish Sensory Centre, Moray House Institute of Education, Holyrood Road, Edinburgh EH8 8AQ Tel: 0131-558 6501.

RNIB Vision 98exhibition

The only major exhibition for visually impaired children and adults in London in 1998, RNIB Vision 98 is on Tuesday 7 July at Kensington Town Hall, Hornton Street, London W8. Exhibition with seminars and workshops covering opportunities in education and employment. Includes a fun area for children. For further details contact Jennifer Makin, RNIB, 224 Great Portland Street, London W1N 6AA, telephone 0171-388 1266.

David Blunkett announces £23 million for multimedia portable computers for teachers

The British Educational Communications and Technology Agency (BECTa) is managing the initiative. Teachers involved in the initiative will receive multimedia portable computers, CD-ROMs and a year's connection to the National Grid for Learning. This will equip them to develop their ICT skills, aid them with their work and provide a resource for the curriculum. In addition, up to 220 multimedia computers will be provided for Literacy Coordinators appointed under the National Literacy Strategy; and up to 220 for senior teachers undertaking formal qualifications through the Teacher Training Agency (TTA).

Braille literature on bullying

The Carlton TV Trust have awarded the charity Kidscape £3000 to braille documents for children who are being bullied. Parents of visually impaired children who are being bullied at school can call Kidscape on 0171-730 3300 Monday - Friday from 10am to 4pm for confidential support and advice as well as brailled literature on what children and parents can do when bullying occurs.

Children's books on tape from Calibre

Calibre's new large print catalogue of tape books lists over 900 titles for children and young people. Titles available from Calibre range from classics like Alice in Wonderland and Peter Rabbit, through modern favourites like Stig of the Dump, to recent titles like Mennyms Alone and Weather Eye. There are suggested age categories to help children and their parents find books they will enjoy.

All Calibre books are recorded on ordinary cassettes, so they can be played on standard equipment - even a Walkman. All titles are unabridged. Membership is fi-ee to individuals. To receive a copy of the catalogue, or to find out more about Calibre's services for adults and children, please contact: Calibre, Aylesbury, Bucks HP22 5XQ Tel: 01296-432339 Fax: 01296-392599.

Revolutionary new white canes

A revolutionary range of canes for blind and partially sighted children has been designed by RNIB. For the first time ever canes will be available in modular form enabling children to choose a cane to match their specific needs and preferences - and which will grow with them. The changes to the design result from extensive research which showed that people wanted a more flexible, discreet, cheaper and comfortable range of canes.

The new long canes enable people to select individual shaft sections, different tips to suit them and even the colour of the handle! Children can now keep adding to their cane as they grow and if the elastic breaks or the shaft bends, people only need replace the broken section. The range also includes a telescopic symbol cane. The new symbol canes are much lighter in weight than previous versions and are telescopic so fit neatly into a pocket or bag when not being used. For further details on the range, please call RNIB Customer Services on 0345-023153.

Understanding coloboma

Peter Attenborough is the parent of 8 year old Jonathan who was born with bilateral coloboma and microphthalmia. He is also the Chairman of the Micro and Anophthalmic Children's Society (MACS). Here he describes finding out about Jonathan's eye condition and day to day living with coloboma.

Living with coloboma

It is probably one of the most joyous times in any couple's life when you have just become parents and are alone admiring your new 'perfect' child. It was only hours after Jonathan's birth that this joy was shattered for Gillian and I. The ophthalmologist really didn't know how to tell us that there was something wrong. 'I'm afraid your son's eyes have not formed properly and he may be blind. It is too early to tell just now, we won't know until he's older'. And with that, he left.

We did not know what to say to each other. A shock like that leaves you speechless. During the next 10 days of Gillian's hospital stay none of the hospital staff really said very much about it. That is apart from one consultant on her rounds with students. She had a lot to say about Jonathan but that was over Gillian's head to her students and in the sort of language set aside for the medical profession.

It was only as the weeks and months went by that we began to see Jonathan did have some level of vision. Even so, it is only over the past year or so that we have managed to get a reasonably good idea of what his actualvision is. He is blind in his right eye and partially sighted, with no vision above the mid-line, in his left. He also has nystagmus.

Day to day living with the condition changes with his age. When he was a baby we had to make sure he was not in bright sunlight which meant a routine car journey could be a nightmare. Sunblinds helped but a young baby is very inquisitive! I cannot remember how many sunblinds Jonathan got through. Another problem with blinds in a car is that when you turn left the sun is on the other side. Then came the toddling stage - we found that if it stuck out then Jonathan would find it...usually the hard way! He still bumps into things occasionally. Because he only has partial use of one eye, uneven ground can also be a problem. Stairs are not as much of an issue as they used to be but he still takes extra care when using them.

Given his level of vision, Jonathan copes extremely well and we are proud of the way he has overcome some of his earlier barriers. He attends a mainstream school and has a peripatetic teacher from the service of the visually impaired who visits him regularly and has made sure that he has been given the aids and assistance that he needs to help him achieve his best.

He also has auxiliary help in the classroom.

Jonathan has a younger brother and sister, Lee (5) and Jennifer (4) who realise he has a visual impairment and both appreciate that he sometimes needs extra help. Given their ages, they can be surprisingly helpful towards him. Our main concern at the moment is his independent mobility. It is difficult to keep making excuses to his friends when they call for him to go out to play. Our local society for the blind will soon be starting mobility training for him, this should at least give him a little freedom to be out with his friends. Mobility training will be an ongoing thing for many years to come. The most important lesson we have learned from our experiences with Jonathan is, if you make a big issue out of small achievements then the big achievements will come naturally.

What is coloboma?

That is a question that Gillian and I tried to find an answer to for a long time after Jonathan was born in 1989. You can ask your hospital, local library or even your GP for some literature and you probably won't get very far. When we asked our consultant, his reply was 'coloboma just means the eyes did not form properly when he was developing in the womb'. Basically, he was right and the sad truth about NHS clinics is that most consultants are hard pushed to get through the amount of patients they have to see in a day and don't have a lot of time to get into in-depth discussions about various conditions. That is no comfort to parents of a newborn infant with a congenital malformation who want to find out as much as they can about the condition.

So where did we go from there? For about 3 years we scratched around, getting bits of information here and there. Then, out of the blue, a Sunday newspaper got in touch and told us they were investigating clusters of children born with eye defects in rural areas. This opened up a whole new opportunity for us to find out more. Through publicity, local and national government funded investigations were set up around the UK into these clusters which, fortunately, put me in a position where I could pick the brains of some of the most knowledgeable eye specialists in Britain.

A 'normal' eye

A 'normal' eye

A 'typical' coloboma affected eye

A 'typical' coloboma affected eye

Coloboma comes from the Greek word which literally translates to mean 'mutilation'. I bet the person who thought up that label had a reputation for not beating about the bush! The eyes develop between the fourth and anywhere up to the fifteenth week of pregnancy (although they are usually finished at around 8 weeks). This is when the foetus is at its most vulnerable and when the interruption occurs. Coloboma is failure of the closure of the optic fissure (optic cleft) leaving a gap in all or some of the structures of the eye.

The condition occurs in about 1 in 10,000 births. It is usually apparent because of a mis-shapen pupil, the most common being a teardrop or cats-eye shape and the iris is sometimes low on the eye (see diagram). The amount of vision a person with the condition has varies considerably and depends on which structures are involved and how severely those particular structures are affected. Children with coloboma often have a dislike of strong light. This is because the pupils can't react to light in the normal way. They may also have the added difficulty of other damaged and sensitive eye structures which find it difficult to deal with the extra light. People with this condition should be checked regularly for glaucoma and detached retina as they can be more susceptible to these conditions.

Coloboma is one of a family of eye conditions known as the microphthalmia range of anomalies. The other conditions in this range are: anophthalmia (absence of eyes), microphthalmia (small eyes), congenital cataracts and congenital cystic eye. The specific gene(s) responsible for this part of the eye development have not yet been identified. There is research being undertaken in Scotland at the moment and one of its aims is to identify the gene(s) responsible. The outcome of this study should be known by March 1999.

Peter Attenborough, Parent and Chairman of MACS

What is aniridia?

Aniridia is a rare congenital eye condition characterised by the lack of an iris. Yvonne Booth, who has the condition herself, describes the symptoms of aniridia and how it affects her daughter Joanne.

As a child of the 60s, my parents were happy to accept what the 'experts' told them. At this time information of any sort was not readily available for parents, so I grew up with aniridia as a way of life, dealing with things the best way that I could. I have always believed retrospectively that had I been given the support and opportunities that visually impaired children are given today, I would have achieved much more academically. I have spent much of my adult life and I am still at present studying to reach my full potential. As an adult and a parent of a child with aniridia, I am so much more aware of the implications of the condition and also better equipped to ensure that my daughter receives the support and resources which will enable her to lead an active and independent life.

Aniridia is a rare eye condition which is congenital (present at birth). It is characterised by the absence of the iris although this description alone can be misleading since other parts of the eye such as the cornea, the lens, the retina and the optic nerve may be affected. The condition is usually bilateral (affecting both eyes) and manifests itself in two ways. Either it is hereditary in which case it will be passed from one generation to the next since a genetic problem would be present (this is the case in my family) or it is sporadic which means that the genetics of the affected person are altered during gestation making them the first in the family history to have the condition. In either case, there is a I in 2 chance of the condition being passed on to any children the aniridic may have.

The figures given for the prevalence of the condition vary from 1 in 60,000 to I in 200,000 in various parts of the world. The first known recorded case was in 1818. The lack of iris is usually not the major detriment of visual function. Poor visual acuity is more likely to be associated with absence of the macular reflex, optic nerve hypoplasia (where the nerve begins to grow then stops for no apparent reason before full development) and the potential development of cataracts, glaucoma and cornea opacification. Aniridics can be affected in many ways and to various degrees with visual acuity ranging from mild with correctable vision to very poor. Besides the above mentioned ocular abnormalities associated with aniridia, there is also another condition which is not so common but nevertheless a possibility which has to be looked for and monitored from an early age. This condition is known as WAGR Syndrome (wilms tumour, aniridia, genito-urinary malformation and retardation). The tumour is associated with a genetic fault along the short arm of the 1 lth chromosome and affects the renal area. Children with aniridia are usually given regular scans to ensure that the tumour is not present and if unfortunately it is, then a range of treatment including chemotherapy and surgery can almost certainly rectify the situation. Even though there is much information around today about many eye conditions, sadly aniridia is still a condition which has relatively little written about it, at least not in layman's terms and particularly not in the UK. Although some research has been carried out, as far as I am aware, no conclusive answers have been found.

When my daughter Joanne was born with aniridia, it came as no great surprise. We had been very fortunate that our first child Gareth had not inherited the condition, and although ideally we would have loved Joanne to have been born fully sighted, we accepted that the risk was worth taking. Since I have lived with aniridia as have other members of my family without too much distress, we were well prepared. What we were not prepared for were the other difficulties which Joanne experienced at birth. Because of a blood disorder I had, unknown to myself or anyone else until I was pregnant with Joanne, my blood cells severely affected Joanne's blood and as a result she had to have a complete blood transfusion at birth. This, along with an enlarged heart and a clicky hip meant that she was very poorly and so aniridia was the least of our worries. Fortunately she pulled through all of that and has hardly had a day's illness since. Sadly, two subsequent pregnancies ended in stillbirths because of the blood disorder (both girls did incidentally have aniridia).

Developmentally, Joanne was not too badly delayed. She took a while longer than would be expected to sit up unsupported mainly because she could not focus on anything in the distance and would therefore lean over to focus on the floor. She never crawled but would shuffle along on her bottom. In the early days she was regularly monitored by the paediatrician and the ophthalmologist and fortunately nothing unexpected was detected. She has since been checked twice a year by the ophthalmologist to ensure that no complications such as cataracts or glaucoma are developing and to date everything is just fine.

Educationally, Joanne has been well supported from an early age. She started off in a playgroup with no formal support but nevertheless well cared for. A Statement was prepared in time for her to start primary school where she received .2 classroom assistant support - this was increased to .5 by the end of primary school and .8 currently at secondary school. She has needed few other resources although at primary school she was given a computer which did help to a certain extent. However, she was always resistant towards it and once she moved to secondary school she chose not to use a computer other than as part of the curriculum. The local authority advisory teacher for visually impaired children had some input in the early stages but sees very little of Joanne now unless he is contacted by the school for advice.

Although there is a secondary school in Plymouth which has been resourced for visually impaired pupils, Joanne attends our local secondary school which has a unit for hearing impaired pupils. The school is very supportive of Joanne's needs and she has an excellent relationship with her tutor, her classroom assistant and the learning support team. The main difficulties Joanne experiences at school are in maths when using graphs and measuring angles. She also has difficulty with map work in geography and some experimental work in science, but she is conscientious, tries very hard and is always positive in all that she does.

In her daily life Joanne is confident in her ability to be independent whilst being responsible enough to realise that she needs certain aids to help her. For reading she uses a magnifying glass, for distance she uses a monocular and as protection from bright light she should wear tinted glasses, but being a typical teenager, she is conscious that she looks different and therefore takes every opportunity not to wear them. She does however know when she really needs to wear them for safety reasons and is realistic about it.

Joanne has a wide range of hobbies and interests which she participates in fully, again with the benefit of some aids. She is an avid football fan and attends as many matches as possible (equipped with monocular), she is a keen girl guide and has just begun her Duke of Edinburgh bronze award. She has several penfriends including one in the USA who has aniridia (they email each other) and she loves music and dance.

Yvonne Booth, Parent

Aniridia support group

There is no support group for aniridia although I have tried in the past to set one up. Through my work with LOOK, the National Federation of Families with Visually Impaired Children I have become recognised as the national contact by various organisations and I am happy for this to continue. I have a growing list of families with children who have aniridia and I have recently made contact with families in Canada, USA and Greece. I am currently reintroducing the idea of a support group or at least a regular newsletter. If anyone would like more information; please contact me: Yvonne Booth, 19 Bowhays Walk, Eggbuckland, Plymouth PL6 5SH Tel/fax: 01752-770797 email Ybooth8709@aol.com

The effects of nystagmus

Claire Entwistle describes the origins of the Network and how one young person, Sam his nystagmus in the school environment.

Fourteen years ago Sam Jones was a baby with nystagmus, colour blindness, photophobia and short sight. Like many parents of children with nystagmus, Sam's parents knew very little about the condition and were faced with hard decisions about their son's upbringing. Would it help to register him as partially sighted, what kind of school should he go to, and should he have a Statement of Special Educational Needs? His mother Vivien's idea of statementing was that it had to do with behavioural problems and she was understandably unwilling to put this label on her visually impaired son.

Vivien was luckier than most. Almost by chance, she met a small group of other parents at a clinic at the London Refraction Hospital (now the Institute of Optometry) and formed the support group Nystagmus Action Group (now the Nystagmus Network). Together they collected information about the likely effects of nystagmus on their children and worked their way through the registration and statementing processes.

The result for Sam was registration as partially sighted and a recommendation at the age of seven that he have a mainstream education in schools with a special visual impairment unit. Fortunately there was such a primary school locally and also a large comprehensive school to which he moved four years later.

The Vl unit in Sam's school at present serves about thirteen pupils out of two thousand. Children with very severe visual impairments have lessons there but others like Sam take part in the mainstream classes whilst receiving extra support from the unit. There is a room with CCTVs, enlarging photocopiers and computers which pupils may visit for one or more hours a week, and special staff are on hand to answer questions and help with school work. The unit also helps teachers produce lesson material in a suitable format for individual children.

One of the problems of living with nystagmus is that its effects vary from one person to another, and can even be different for one person at different times of day, so it can be hard for teachers to understand a child's needs.

It is not safe to assume that making everything bigger will solve the problem! Typical problems for schoolchildren with nystagmus are difficulty following blackboard work especially when it involves taking down notes, a slower reading speed because it takes them longer to 'scan' a page of text, and problems following visual demonstrations unless they are very close up. Children may have a particular position where they need to sit in order to see comfortably and they are unlikely to be able to share books. They may be light sensitive so that they are troubled by glare from overhead lights or reflections from windows. Nystagmus gets worse during periods of illness, stress or tiredness and some people with nystagmus get exhausted by the effort they put into focusing at an uncomfortable distance or for a long period of time. Children can be accused of inattentiveness or laziness in the classroom when they are simply tired.

A big advantage of the visual impairment unit is that Sam is able to ask for as much help, and the type of help, that he needs for different subjects and different teaching styles. In most cases the teachers give him lesson plans or handouts in advance of the class, and in large, dark print. This means he can read through the material comfortably beforehand instead of straining to follow blackboard work. If necessary Sam can ask for a classroom assistant to sit next to him and take notes, or for a teacher to go through the work with him later if he feels he has missed something. He is also allowed extra time in school and in public examinations, between 25%-50% depending on the examining body.

Games can be a big issue for children with nystagmus, although again the effects are different for different children. Following fast movement is often a problem, as is catching or hitting balls; throwing or kicking can be easier. On the other hand there are many sports which are not particularly affected by nystagmus. Sam is good at swimming, multi-gym and PE. He enjoys football but is not so good at badminton and hockey. At Sam's school the timetable allows for two hours a week of games and he spends one hour of this in the Vl unit, so he can just play the games he enjoys.

Like many young people with a disability, Sam prefers not to have attention attracted to it, and does not want all of his friends to be people with visual impairments. He tends to ask as little as possible for the more noticeable kinds of help, such as having a classroom assistant sit next to him in lessons. However, he does wear dark glasses and a baseball cap for his photophobia, and contact lenses to correct his refractive errors (nystagmus itself cannot be corrected with glasses or contact lenses), so it is obvious to most people that he has a visual impairment. The presence of the Vl unit in the school means that teachers and pupils are used to working with blind or partially sighted children, so Sam's situation is less unusual than it would be at some other mainstream schools. Sam is on friendly terms with other users of the VI unit but most of his friends are fully sighted.

Sam is doing extremely well at school and dealing effectively with his visual problems. He is in a school with excellent facilities and has access to his mother's wealth of knowledge about nystagmus and 'the system'. However, nystagmus is a complex condition and Sam still says that he sometimes finds it hard to make people understand what it is like having nystagmus and how best to deal with it.

Claire Entwistle, Nystagmus Network

    Parents, adults or professionals who would like more information are welcome to contact the Nystagmus Network helpline on 01392-272573, or speak to Claire at the office on 0181-968 6161.

Living with ocular albinism

Our son, Sebastian, was born in November 1992. The first hint that he might have a problem came four weeks later. The doctor said, 'your son's eyes have abnormal to-and-fro movements called nystagmus, but I am not sure what the problem is'. She referred us to a paediatrician and we went home to wait for the appointment.

It was an extremely anxious wait. We could not help ourselves guessing agonisingly about what the problem might be. Was Sebastian totally blind? Was it the first of a series of disabilities they would discover? Why had this happened to him? We had nothing to guide us, the future was an unknown.

The paediatrician made a tentative diagnosis of ocular albinism and, equally importantly, reassured us that Sebastian was otherwise healthy. She referred us on to an ophthalmologist who, at last, was able to start answering our questions.

Ocular albinism is a rare inherited condition affecting about one in 50,000 of the UK population. People with ocular albinism have the same eye problems as albinos (although without the lack of skin pigmentation). As the inside of the eye lacks its dark pigment lining, light bounces around inside the eyeball causing a blurred image. The retina fails to develop fully and visual clarity is significantly reduced, especially for distance vision which may be around 6/60. Sight is worse in bright light, which is also uncomfortable.

We have continued to attend the hospital and feel particularly fortunate in having seen the same doctor practically every time we go. She always sends us a copy of her letter to our GP. This summary of Sebastian's progress and her advice is very useful.

Sebastian was given eye patches to wear several hours a day for his squint. He would only keep them on if distracted, and my wife spent hours trying to keep him amused.

Even then the patch would be off as soon as her back was turned. As Sebastian became cleverer at the game, we found that it disappeared... to be discovered later stuck to the underside of his highchair!

When Sebastian was seven months old, we came into contact with our local authority's educational service for children. Their advisory teacher for visual impairment was very supportive and taught us about many of the important details. For example he could not see our facial expressions unless we were very close, so we had to remember always to use speech to communicate, and to address him by name. For maximum clarity of vision contrast is all important and he found felt pens easier to see than pencils. Dark glasses reduce contrast, so for outdoor use on all but the brightest days we switched to clear lenses and gave him a peaked hat to wear against the glare.

As Sebastian grows up we are constantly surprised how little his disability affects him. He rushes about the house as fast as the other kids. He draws endlessly and well, and enjoys picture books. He is mad about trains and cars, which we find rather heartbreaking as he will never be able to drive. He soon demanded a bicycle. After some initial hesitation we gave in and now, as we watch him racing with his sisters down woodland tracks, our fears seem ridiculous. He does, however, sit about eighteen inches from the television although at this range he enjoys it. Also he can quickly lose us in shops or in the park. We have to take care to keep within his range of vision and when necessary, to guide him back by calling him.

When Sebastian started at nursery school we again had much useful help from our local authority advisory teacher. We considered asking for a Statement of Educational Needs, but decided against this, at least for the moment, as he was getting all the help he required, which was advice rather than special equipment. He recently moved to an independent school and we persuaded the authority to agree that the advisory teacher would continue to visit. This has been arranged without the need for an expensive and time- consuming statement, and we feel that the local authority, and especially their advisory teacher, has been supportive to us.

Sebastian now has his place at the front of the class and is given an opportunity to look through the picture books before story time. He manages to read large print by holding the book close. He has his own black felt tip pen for drawing and writing. One continuing problem is a difficulty in recognising his friends in the playground now that they are all in uniform.

We still have anxieties about the future. How will Sebastian cope with the reading once he gets down to more serious studying? How will he deal with school sports? Will poor performance impair his friendships? Will he find a career that he enjoys...and get a job? How much of a problem will he find being unable to drive a car? How safe will he be cycling on the roads?

Some reassurance has come from the 'Albino Fellowship' self help group. We went to a meeting of the London branch and for the first time met others of all ages with albinism and ocular albinism. It was wonderful to talk to people with the same worries and to those who had successfully confronted the problems. We joined the fellowship and find it a friendly, positive group, and between meetings enjoy its entertaining and informative newsletter.

Another helpful support group is 'Look', the National Federation for Families with Visually Impaired Children. This has the advantage of a local branch and is thus a good way to learn about local facilities and services.

Recently I have searched for albinism-related topics on the internet. The RNIB website (www.rnib.org.uk/) has a wide range of useful and up-to-date information. The American National Organisation for Albinism and Hypopigmentation is at www.albinism.org/. Although American biased, it is informative and has a marvellous 'guestbook' full of comments by albinos and parents of albinos. Many parents write about their own children echoing what we feel about Sebastian. We forget about his visual impairment and see only what he really is...the most wonderful little boy, full of fun and character and mischief. We are very lucky to have him!

Chris Timmis, Parent

    The Albino Fellowship can be contacted at: PO Box 77, Burnley, Lancashire BB11 5GN Telephone helpline: 01282-771900 2-3pm Tuesdays and Fridays.

    LOOK is the National Federation of Families with Visually Impaired Children. For details of your local group, contact: LOOK, Queen Alexandra College, 49 Court Oak Road, Birmingham B17 9TG. Tel: 0121-428 5038.

Internet - Useful websites

These are some websites from both the UK and overseas we have found relating to specific eye conditions. New websites are appearing all the time so please let us know about any you have found useful!

Achromatopsia Network: www.achromat.org/

Information and support network for individuals and families concerned with this rare inherited condition, including both rod monochromacy and blue cone monochromacy.

Albinism: www.albinism.org/

Provides information about albinism and the American National Organisation for Albinism and Hypopigmentation (NOAH)

Battens Disease Support and Research Association: bdsa.org/

International support and research networking organisation for families of children and young adults with Battens Disease.

International glaucoma association: www.iga.org.uk/iga/

Offers patients and health care professionals a forum for the exchange of ideas.

Micro and Anophthalmic Children's Society: www.btinternet.com/-macsnet

Puts families in touch with others and raises public awareness.

Nystagmus Network: www.btinternet.com/~lynest/nyhome_n,htm

Self-help group for all those affected by nystagmus.

Parents place: www.rnlb.org.uk/parents/welcome.lhtm

RNIB forum for parents to exchange information and request help and advice. Includes an innovative discussion board for parents and carers.

RNIB's website also provides links to many other interesting websites concerning visual impairment.

All about childhood cataract

Chris Lloyd, Consultant Paediatric Ophthalmologist at Manchester Royal Eye Hospital, explores the causes and treatments for childhood cataract.

Infantile and childhood cataract is an important and interesting part of an ophthalmologist's work. Affected children need careful management. This condition while treatable, still causes visual impairment in a substantial number of children (15% of blind and partially sighted children in RNIB survey 1991) and has been shown to be the most common cause of partial sight or blindness amongst ten year olds in the UK.

In recent years there have been many improvements in the treatment of children with cataracts. Better understanding of the 'lazy eye' (or amblyopia), more sophisticated surgical techniques and advances in intraocular lens and contact lens technology have all helped. Early treatment and, by implication, early detection is vital. Paediatricians and General Practitioners specifically look for signs of this condition when examining babies. Hospital treatment includes surgical removal of the cataract, optical correction of the operated eye(s) (glasses, contact lenses or the insertion of intraocular lenses), and instructions about any patching therapy required. It is important for parents to understand fully the treatment programme required as this is very much an area where promoting visual development is a joint effort often involving a lot of hard work for the child's carers.

Causes of childhood cataract

Approximately one third of all cataracts in the newborn child are idiopathic (ie no identifiable cause found), and this proportion is much greater in the child with only one affected eye. Infantile cataracts are often inherited and these children may have slightly smaller eyes than usual. The parents and brothers and sisters of affected children are examined in every case as an apparently normal parent or sibling may have a visually insignificant partial cataract whilst the more severely affected child has a dense visually disabling cataract.

Rubella infection early in pregnancy is a cause of multiple congenital anomalies and cataracts (one or both eyes) may be present at birth or develop in the first year of life. Rarely, other infections during pregnancy can cause cataracts in the newborn.

Some metabolic disorders in the infant can lead to cataract formation. Most, such as Galactosaemia, a disorder of sugar metabolism, also result in very ill babies who fail to thrive. Cataracts are more common in young children with Down's Syndrome, a common chromosomal disorder, and this incidence increases in adolescence. A large number of other rare inherited disorders include cataract in childhood as one of their features, so many children with cataract, together with their families, are seen in hospital by a clinical geneticist who can help with diagnosis and provide advice about the risk of cataracts in future children. Some children develop cataract later in childhood. This can be due to a variety of causes including trauma, drugs, radiation and as a result of other eye problems eg retinal disease.

The clinical treatment of childhood cataract

Both unilateral and bilateral cataract in the newborn infant lead to visual deprivation (lack of adequate visual stimulation) during a critical stage of the child's development. This, if untreated, or even when treated late, leads to permanent changes in the visual areas of the brain and some loss of function. Research from several specialist centres has shown that surgery for dense cataracts in the newborn must thus be performed as early as possible to obtain the best visual results. In infants with a unilateral cataract, surgery is best performed well before the age of four months (and preferably before 6 weeks) and in bilateral cataract well before three months. Visual outcome can still vary markedly however, particularly in the child with unilateral cataract.

Less dense or 'partial' cataracts may not need surgery but usually require regular follow ups. Careful monitoring of vision is carried out using simple clinical methods (steadiness of gaze, any preference for one eye etc), special acuity cards and electrophysiological tests (which pick up signals from the visual system). Patching therapy is often necessary.

Difficulty in performing patching therapy is a major factor accounting for relatively poor visual results in otherwise uncomplicated eyes. Patching is not an easy task but is essential in treating an amblyopic (lazy) eye.

It is often difficult to determine the onset of a cataract and occasionally an eye expected to be very lazy will develop good vision after cataract extraction. This is usually due to it being a later onset (unnoticed) cataract rather than one truly present from birth. Similarly, cataract arising later in childhood (particularly after the age of 7) is less likely to lead to severe amblyopia in an otherwise healthy eye.

Surgery

Infants with visually significant bilateral cataracts undergo surgery at the earliest opportunity without jeopardising the child's general health.

Surgical techniques

Two techniques are commonly utilised for childhood cataract surgery:

a) Aspiration: in which some of the outer 'capsule' of the lens is left at the end of the procedure. This is most suitable for older children and in those in whom an intraocular lens is to be implanted.

b) Lensectomy- in which the whole lens is removed and some of the vitreous 'jelly' behind the lens. This is usually used in children under 18 months of age.

Operative and post-operative complications

Modern microsurgical techniques have reduced markedly the incidence of operative and post-operative complications in infantile cataract surgery but as in all surgical procedures they can occur occasionally.

Pupil abnormalities usually taking the form of an oval or off-centre pupil are quite common and mostly do not cause problems.

Glaucoma (raised pressure in the eye) is seen in up to 25% of patients after congenital cataract surgery. This usually requires treatment which may be surgical or medical (drops).

Squint (non-alignment of the eyes) is present in the majority of children after surgery for congenital cataract. A study from Great Ormond Street showed that in many cases the squint is relatively small and surgery was not necessary.

Retinal detachment is an uncommon but serious post-operative complication. It may occur within months of the initial surgery but most occur 20 to 30 years after surgery.

Infection inside the eye is very rare but potentially devastating postoperative complication. Many precautions are taken to avoid this.

Minor complications eg loose sutures are dealt with as they occur.

Post-operative care

The infant's eye(s) must be accurately optically corrected after surgery. This involves wearing glasses or a contact lens (even after an implant lens has been used), as eyes after surgery no longer have their own natural lenses to focus light entering the eyes. In our unit most infants are fitted with contact lenses which we have found to be well tolerated and safe. These are usually fitted within one week of surgery. In bilateral cases, the eyes are operated on within one week of each other, and the first eye is patched until the second eye has been operated on to prevent any early visual advantage being gained by one eye over the other. In unilateral cases no patching is commenced until the contact lens has been fitted. Daily wear soft contact lenses are used. Parents/carers are carefully instructed in lens insertion, removal and cleaning and are given spare lenses to avoid interruptions in their use following Ioss of a lens. They are instructed to remove the contact lenses and contact the department if their child's eyes become red, photophobic or develop a discharge.

Intraocular lenses are used more often by surgeons particularly in the correction of children with cataracts affecting one eye only. Good visual acuities can be obtained in some children, but in our experience many younger children with implant lenses still require careful optical correction with glasses or contact lenses. Many surgeons still prefer to reserve implant lenses for older children in whom the eye has largely finished growing.

Occlusion (patching) therapy

Good results in children born with bilateral cataracts have been possible for many years. Early surgery, regular monitoring of progress and careful occlusion where indicated, can help to overcome any difference in .visual performance between the two eyes. Electrical vision tests (eg Visual evoked potentials) or behavioural vision tests (eg Preferential looking), are used in our hospital to monitor this. Patching does not usually need',to be for very long (an hour or two daily) in the child who has had cataracts in both eyes.

The situation is different in the child with unilateral cataract in whom there is a great tendency for amblyopia in the affected eye. Aggressive patching of the normal eye is necessary in order to get an eventually good result in the eye which had a cataract. One study has shown that if occlusion is performed for less than four hours of the child's waking day, then the vision in the operated eye would lag well behind the 'normal' eye.

In children born with a cataract affecting one eye, we aim to patch the 'good eye' for around 50% of waking hours until the age of 6 to 8. Some parents, after discussion with their ophthalmologist, decide not to go ahead with this rigorous, lengthy and stressful regime in the knowledge that the vision in their child's unaffected eye will be essentially normal.

Conclusion

Cataract is the most common cause of blind and partial sight registration in childhood in Britain. Early treatment in affected infants produces the best visual outcomes. Regular attendance at a hospital ophthalmology department and substantial patching therapy are often necessary over several years. Good results are now possible in the infant and older children may be suitable for intraocular lens implants with good results.

Chris Lloyd, Consultant Paediatric Ophthalmologist Manchester Royal Eye Hospital

New research into sleep difficulties in children

In the summer edition of Visability last year, Caroline Smith gave a striking account of the sleeping difficulties expressed by her totally blind 6 year old daughter Harriet. Her experience illustrates the various unknowns regarding sleep problems associated with visual impairment. Clearly, this is an area which calls for careful research. There have been some important reports recently about adults with severe visual impairment but very little research has been undertaken in children.

Dr Gregory Stores and his group in the Oxford University Section of Child Psychiatry have begun a survey of the sleep disorders in visually impaired children. His team, which is based at the Park Hospital for Children in Oxford, is working in conjunction with colleagues in the Oxford Eye Hospital. For a given sleep problem (eg difficulty getting to sleep) there are various possible explanations or underlying disorders and it is important in the individual child to identify the particular disorder in order to choose the appropriate treatment.

For example, some sleep problems develop from the way parents handle bedtime or when the child wakes up during the night; others have a physical cause such as melatonin abnormalities which are thought to underlie the sleep difficulties in very visually impaired children. Additional possible influences on sleep patterns include other problems such as learning disability, epilepsy or hearing impairment - all of which are also being researched by Dr Stores'group. The overall aim is to understand the mechanisms by which sleep problems arise in children with each of these conditions (or combinations of them) in order to discover the most appropriate ways of treating or preventing them.

Dr Gregory Stores, Oxford University

Developing roles for the orthoptist and 1ow vision services

Prue Dobinson, Orthoptist at St George's Hospital in London, explains the role of an orthoptist, reports on a recent Low Vision Awareness Day and emphasises the need for better collaboration between health, education and social services.

What is an orthoptist?

It was over 60 years ago that an ophthalmologist first enlisted the help of his daughter to take on the time- consuming and sometimes frustrating task of testing children's eyes. Now, there are around 1000 state registered orthoptists practising in the UK. There are currently degree courses in Glasgow, Liverpool and Sheffield Universities.

Orthoptists have specialist knowledge of squints and related problems. A squint (strabismus) happens when a person's two eyes are not directed at the same point simultaneously because of imbalance in the eye muscles. A squint can occur at any age and may result in reduced vision in the squinting eye, double vision, discomfort, and a poor appearance. Treatment can be with glasses, covering one eye, surgery, exercises or drugs - alone or in combination.

Most orthoptists work in hospitals in areas such as visual fields and glaucoma monitoring clinics, paediatrics, specific learning difficulties (dyslexia), strokes, low vision work, neurology and endocrinology.

There is also a teaching role - for undergraduate orthoptists, doctors, medical students, optometrists, nurses and other therapists. Some orthoptists visit special schools and may undertake pre-school vision screening.

The training and overall role have evolved, from mainly squint and vision management, to include other ophthalmic skills, with investigation and treatment of children remaining important in our work.

Hospital eye clinics are staffed by a confusing array of people which can be difficult to understand. Consultant ophthalmologists are eye surgeons who have specialised in eye disorders for at least

6 years after qualifying as doctors. Their skills are supported by junior doctors (ophthalmologists in training) and clinical assistants (doctors who have additional qualifications and experience in clinical ophthalmology). The reduction in junior doctors'working hours has resulted in orthoptists and ophthalmic nurses taking increasing responsibility by giving support in implementing changes of practice, such as shared-care clinics, day-case surgery, and in providing more information to patients and ommunications with other medical, social service and education personnel.

Some clinics also include the service of optometrists (opticians who test for and prescribe glasses) and/or dispensing opticians who arrange to make up prescriptions for glasses and offer a choice of frames. Hospitals may offer a Low Vision Aid (LVA) service provided by opticians, optometrists and, more recently, by some additionally trained orthoptists or nurses. The LVA clinic will provide assessments for optical help such as magnifiers, binoculars or telescopic devices, advice on lighting and other aids for daily living.

Assessing visual impairment in infants

Vision testing in infants is not a precise science. The vision system is immature and the exact extent of visual disability cannot be predicted. If sight does not develop normally within the first few months of life then general development will be delayed, unless information is learnt through the other senses. Vision informs the infant of his or her place in the world. Early intervention enables parents to be shown how to activate their visually impaired infant to discover his or her hands and feet and to become aware of the environment, to promote motor development.

Personally, I have found that the advisory teachers for the visually impaired are invaluable in developing this area. We work together to share assessment information, with parental consent, so that they can be introduced to families immediately vision impairment is suspected. Unfortunately, not all education authorities support their work with children under 2 years of age. However, if parents form early bonds with their visually impaired infant, the development of mobility and social skills is most effective and, therefore, referral to the specialist teachers immediately low vision has been recognised, is beneficial.

Time, observation and deduction skills are essential to piece together the clinical assessment and the impressions of parents, carers and others. There have been notable advances in the development of understanding in this area, particularly from Scandinavia and USA.

Low vision awareness day

A multi-disciplinary conference, Low Vision - High Profile, was arranged at St George's Hospital, London, in December 1997. The guest speakers included Dr. Lea Hyvarinen, a Finnish Ophthalmologist, who has pioneered a whole range of tests and techniques particularly for assessing visual functions in infants, children and multiply impaired people. In this country the tests are not yet routine but should become part of the orthoptists' repertoire.

The Conference was called to raise awareness in health, education and social services of the issues revealed by an Audit of Low Vision Services in the South Thames Region. Orthoptists had gathered information from service users and providers. The results showed a gap between patient experience and their expectations of the service although elements of good practice were identified. Services were not equally accessible or available, and it became clear from the survey of past service users that few children had been referred for low vision aid assessment.

Altogether 120 representatives attended from the health, education and social service professions, as well as members of voluntary organisations. The conference provided an opportunity to learn from each other about the differences and similarities that unite, and frustrate, us in providing low vision services. It was also intended to stimulate greater interest and involvement from the professional groups to increase the relatively small numbers already committed to low vision work.

Optometrist and training consultant, Dr Michael Wolffe reviewed the development of services for the visually impaired throughout the NHS and concluded that there was more to low vision than poor visual acuity. He reinforced the case for multi-disciplinary working and rehabilitation and emphasised the need for more services to provide better access.

Barbara Ryan, low vision officer at RNIB, explained that the national statistics for visual impairment indicated that only 1-in-3 people who could be registered as blind or partially sighted were registered. Under-registration in children, particularly the multi-impaired, is greater. The numbers registered increased year on year but the available appointments in hospital-based low vision clinics were insufficient.

The ophthalmologists' role in the low vision team was discussed by Rosemary Robinson, ophthalmologist for the low vision centre in Birmingham (formerly BRIB, now known as FOCUS). She said that ophthalmologists were often the point of initial contact for patients with vision loss. In order to manage this responsibility sensitively they had to cope with their own feelings of inadequacy and failure before they could help the patient through this difficult time, but generally they had no formal training in breaking bad news.

Giving time for the diagnosis to sink in was important and it was good practice to offer a follow up visit within two weeks to answer questions as much of the initial information would not be absorbed.

A written summary or taped consultation was helpful.

The ophthalmologists' role included providing the initial and revised diagnosis, review of the medical care, an assessment of how the person managed in daily life and advice on registration. She said under-registration of visually impaired people was due to ophthalmologists' not raising the possibility of registration with patients, to their negative attitude to the process or to their ignorance of the criteria. Mrs Robinson said that ophthalmologists needed more training in aspects of low vision.

Professor Alistair Fielder, paediatric ophthalmologist at St Mary's and the Western Eye Hospitals, London, agreed that ophthalmologists had a difficult role in bearing bad news. He said that most children in his care had multiple impairments arising before or around the time of birth although they were often not identified until later. Only a small proportion had visual impairment which could improve with treatment. He stressed the importance of early registration. This meant that families were recognised as having a need and opened the doors to education and social services support. He agreed that services were fragmented and that medical and education information for parents should be improved. Each professional should implement inter-disciplinary communications.

Professor Fielder supported Dr Hyvarinen in recognising the need to quantify visual functions to improve general understanding of childhood vision impairment and to inform the family and other professionals. However he was less convinced that stimulation of residual vision could increase acuity.

Dr Hyvarinen works closely with parents and therapists to assess and enhance vision. Her assessments include motor and sensory functions with observations on the use of vision including the ability to communicate, orientation and mobility skills and activities of daily living under the effects of changing illlumination. She described the use of magnifying lenses at an early stage to stimulate the focusing power, particularly of hypotonic infants, who had been misdiagnosed as autistic.

David Brown, a specialist teacher and Head of the SENSE Family Centre, London, introduced awe-inspiring ways of discovering the sensory function and abilities of profoundly multi-impaired children.

Those who attended the Awareness Day recognised the value of inter-disciplinary meetings in understanding the roles of others providing services for visually impaired people. Collaboration is required to improve services and a need for further training in awareness was acknowledged.

Climate of change

Reading past issues of Visability clearly indicates the difficulties and frustrations felt by families of visually impaired young people. It is no consolation that there are similar problems at any age and there are far greater numbers of elderly adults and people with multiple disabilities. Much discussion has been generated about the need to improve the quantity and quality of services to people with reduced vision. Patients and parents have long felt angry about delays in diagnosis and treatment, the lack of sensitivity in breaking bad news and the need for written information to support the advice offered. The professionals and voluntary agencies involved with low vision are trying hard to respond to this need.

A recent Low Vision Consensus Conference, chaired by Lord Jenkin in March has resulted in the formation of a Low Vision Services Working Group. Wide consultation issought and it is projected that a document will be produced next year to guide future development of services.

Prue Dobinson Orthoptist, St George's Hospital

See-through braille

The ClearVision postal ending library was set up in 1986 and now has over 7500 children's picture books, fiction and non-fiction, adapted for sharing by braille and print readers. Most of our books have the brailled text interleaved on clear plastic sheets, a system developed by ClearVision in conjunction with RNIB in the early 1980s. This method of adapting print picture books has proved extremely popular, and has the great advantage that any braillist with access to a comb-binder, a guillotine and a Perkins Brailler can produce books in this format. RNIB now stocks the appropriate clear plastic brailling sheets (ref. BP50, cost £8.41 per 100 sheets) and binding combs are available from most stationery suppliers.

The disadvantage of all this, for ClearVision, is that books we have not produced are now being called 'ClearVision' books. If you are planning to make your own books in this format we are happy to give you any help we can, but we do ask you to use a different name for your books.

The ClearVision library is becoming increasingly well-known and now lends books to over 500 schools, public libraries and families throughout the UK. ClearVision is a registered trade mark and books are produced to exacting standards following detailed layout instructions. All our books are carefully checked by a professional proofreader.

ClearVision is a registered charity and does not sell adapted books. Quite apart from the copyright implications of offering such books for sale, with the number of ClearVision borrowers increasing all the time - 100 families have joined the ClearVision library over the past 12 months - we never have any books to spare!

Marion Ripley ClearVision Manager

    To contact ClearVision, telephone 0181-789 9575, or write in print or braille to ClearVision, Linden Lodge School, 61 Princes Way, London SW19 6JB.

Fringe poster competition

From its inception 19 years ago, the Fringe poster competition has inspired over 100,000 school children to put their imaginations to the test by conveying the true essence of the Fringe in one design. The experience is often the beginning of an arts-based career. Once again, the judges had the difficult task of deciding which design would be the icon for the Festival Fringe seen all over the world. The competition is open to school children throughout Scotland. This year 151 schools.took part with a total of 3,915 entries.

This year's lucky winner is 16 year old Andy Manzie, a pupil at the Royal Blind School in Edinbu.rgh. This isthe first time the competition has been won by a visually impaired pupil. Andy's remarkable poster design will be transferred to t-shirts, mugs and other Fringe memorabilia which tourists can buy from the Fringe Shop.

New publications

Understanding...eye conditions series

This series has been updated to include the following free titles:

  • Understanding cataracts
  • Understanding age-related macular degeneration
  • Understanding retinitis pigmentosa
  • Understanding diabetic retinopathy
  • Understanding retinal detachment
  • Understanding glaucoma

RNIB Student Information Pack

Available from the end of June, this pack contains a new and revised set of information sheets aimed at potential and current post-16 students who have a visual impairment. Also for staff in colleges, universities and other education environments.

Price £5.00. A4 Folder with inserts Print PR10600, Braille PR10601, Tape PR10602 ISBN 1 85878 157 4

Access technology 1998/99

Access technology is RNIB's biennial guide to Information and Communications Technology available to support visually impaired pupils and students in mainstream schools and colleges. It contains the latest information on products - hardware and software - including braille translation packages, embossers, screen enlargement programmes and screen readers. Up-to-date prices and specifications are included to enable comparisons to be made, and contact information for all manufacturers and distributors is provided. There are a number of specially commissioned articles on topics of current interest, including access to the internet for visually impaired pupils.

ISBN 1 85878 139 6. Price £12.95 plus £3.50 P&P. Available from: Book Sales Service, RNIB Education Centre: London, Garrow House, 190 Kensal Road, London Wl 0 5BT Tel: 0181-968 8600 Fax: 0181-968 3593.

A new Book Sales Catalogue of educational books and resources, many from overseas, will be available from the end of May from the above address.

Kids' summer specials

There'll be plenty to keep the kids amused during the summer holidays, thanks to two bumper publications being produced by RNIB.

Here Comes Summer promises hours of fun for 7 to 11-year-olds. It's bursting with puzzles, quizzes, jokes, things to make and do, short stories - there's also a great competition and a free give-away!

Scorcher! will help keep boredom at bay with young people (12 to 15 year-olds) and includes features on your favourite pop and soap stars, celebrity gossip, puzzles, quizzes, competitions and top films, videos and music being released during the summer months.

Both these publications are being produced in braille and on disk and will be available from the end of June. However, you can place your order now with RNIB Customer Services on 0345-456 457 (for the price of a local call).

For Here Comes Summer quote TC20527 for a braille copy and TC20528 for a disk copy. For Scorcher, quote TC20531 for braille and TC20532 for disk.

Each publication costs £0.75 UK subsidised and £2.00 UK cost. They are also available for export - price on application.

Video

New audio described videos from RNIB

Fans of Walt Disney's Classic The Rescuers can now join Bernard and Miss Bianca for another exciting adventure. Walt Disney's Classic The Rescuers Down Under has recently been released with audio description and is available from RNIB's home video service.

This animated adventure sees the two brave mice summoned to Australia. Their mission is to help a young boy struggling to save a great eagle from a ruthless poacher. There is danger at every turn, but a crew of local creatures, including Jake the kangaroo mouse, to lend a helping hand.

Walt Disney's Classic The Rescuers Down Under is the latest children's video to be released with audio description. June will see the release of another Walt Disney classic, Mary Poppins, starring Julie Andrews and Dick Van Dyke. James and the Giant Peach, based on Roald Dahl's best selling children's story, will also be available from June.

There are now forty titles available from RNIB's Home Video Service. Audio description is an additional narration describing action, body language and facial expressions which allows visually impaired people to follow what is happening. Audio described videos play on an ordinary video recorder and can be purchased or rented from RNIB Customer Services on 0345-456457.

If you would like a catalogue providing a full list of titles available contact Mary Flaherty, RNIB Holiday and Leisure Services, 224 Great Portland Street, London Wl N 6AA.

Anne Robson, RNIB Holiday and Leisure Services

Technology - Tried and tested: OCR reading systems

Blind people have been using Optical Character Recognition software to read the printed word since the mid-1980s. In those days machines such as the KurzweU Reading Machine cost in excess of £20,000 and could read only.a limited range of text styles with accuracy levels that would not be tolerated today. Character recognition technology has vastly improved since those early days and the cost has now dropped to a few hundred pounds for off the shelf standard systems. However, there is wide range of systems available - some are designed for blind users, some require you to have a PC with speech output and some can be bought on the high street or are given away free with many scanners. This article will hopefully give the non-expert an insight into what is currently available, what you can expect to be able to read and what you might need in terms of other equipment, training and cash to be able to make use of OCR technology.

All OCR systems basically consist of two elements, the OCR software which does the recognition of text and a scanner which takes a photo-like image of the document to be read. There are three different categories of OCR systems available to purchase - standalone systems, software systems designed for blind users and standard OCR software usually for Microsoft Windows PCs. All of these types are in use by blind people in education at home and in employment.

Standalone systems

These are designed specifically for blind users. They require no extra hardware or software, have built in speech output and are usually quite easy to operate. However, they do vary in design from custom designed readers that consist of one unit, to adapted PCs which consist of a PC system unit (with no monitor or keyboard), a separate flatbed scanner and a keypad. The following are the main standalone systems currently available. Standalone systems are more expensive than PC based systems as they also include the processing hardware as well as OCR software. Because of their ease of use and installation and no knowledge of computers being required, many people use standalone OORs at home. Training usually requires a few hours and is normally an additional cost.

Galileo

This system is a self-contained unit about the size of an office printer (60 x 415 x 170 cm). It is controlled by a set of easy to use raised rubber buttons on the top of the unit next to the scanner surface. Good quality speech output is provided through its built in Dectalk synthesiser. It is able to read all fonts from size 6 point to 32 point. In practice it will read good quality original print that is black on a white background with a high degree of accuracy (95% +). The accuracy of poorer quality print such as poor photocopies or faxes, newspapers, coloured text or coloured backgrounds is usually much lower. Items we have found impractical to read include telephone directories, some utility bills, and glossy magazine adverts. The Galileo has an internal 1 gigabyte hard disc for storing documents read and a useful 3.5" floppy disc drive for copying documents to PC compatible machines or reading documents that have been saved as text on a standard floppy disc. An optional extra is the facility to read other European languages.

Supplier: Techno-Vision Systems, Tel 01604-792777

Cost: approx £3,000, additional languages cost £500 each.

The Reading Edge

This is another self contained unit which measures 18 x 45 x 37cm. It has a separate keypad to control reading and scanning but is, like the Galileo, simple to operate. This system has a sloped front end called a book edge to facilitate the easier placement of thicker books on the scanner surface. The reading surface is positioned right to the edge of the front surface which makes it easier to read into the spine of some books. This extra facility is reflected in the higher cost of the system. Its reading ability is similar to the Galileo with the same limitations for poor quality text, magazines and coloured print. Speech output is via a built in Dectalk synthesiser.

If you do not require a book edge the higher cost of this system does not give you any additional benefits. Storage capacity is also lower as it uses a ROM chip rather than a disc to store documents. The storage capacity is 120 kilobytes (about 150 pages). An external 3.5" floppy drive is available as an optional extra at £450.

Supplier: Pulse Data International, Tel 01933-626000 or, Concept Systems, Tel 0115-925 5988

Cost: approx £3500

The Reading Companion

This system is based on a standard 486mhz PC system unit with a separate flatbed scanner. It has a separate keypad to control scanning and reading and again is fairly simple to operate. Speech output is via a Doubletalk synthesiser which is generally regarded as lower quality than the Dectalk. Storage of documents is on the internal 170 megabyte hard disc and a standard 3.5- floppy drive firms part of the system unit. Recognition is provided by Recognita software and its reading accuracy is acceptable for good quality print but lower for poorer quality print than the Galileo or Reading Edge.

Supplier: DMA Ltd, Tel 01844-292274

Cost: £2250

Kurzweil 1000

This system consists of a Pentium PC system unit, Kurzweil OCR software and a Hewlett Packard flatbed scanner. The specifications of the PC unit change rapidly with new models coming out every 6 months but it will incorporate a sound card, CD-ROM drive, hard disc and floppy disk comparable to an up to date Pentium multimedia PC. It is controlled by a separate keypad that plugs into the keyboard port on the system unit. Speech output is good quality and provided via a software synthesiser called Flextalk and the standard PC sound card. The reading accuracy is near to what is currently possible on any system. In my experience it is able to cope with multiple columns, tables and other complex page layouts better than other standalone systems. This is largely due to the fact that it uses more up to date OCR software. However, coloured prints, magazine adverts and very poor quality copies will still cause problems and won't be read accurately. Of course, as you are purchasing what is in effect a high end multimedia Pentium PC it would seem a pity not to be able to utilise it for other purposes than reading, perhaps sighted members of the family might want to use it as well for example. In which case it is sensible to buy a monitor, mouse and keyboard with it.

If you want to buy your computer elsewhere or already have one the Kurzweil is also available as software only. See section on PC based systems.

Supplier: Sight and Sound Technology Tel 01604-792 777

Cost: £2,200

Smart Reader

This is a self-contained unit but incorporates a standard Hewlett Packard scanner and purpose built system unit bolted neatly together. The unit measures 17 x 27 x 47 cm. It is controlled by an easy to use keypad which plugs into the unit but additionally has a slider control which is used to read through scanned text. The system uses a Dectalk synthesiser for speech output and an 850 megabyte hard disc to store documents. It does not have a floppy disc drive but one can be fitted on request. This is a fairly new system and on the one occasion I have tried it, its accuracy compared very favourably with the Galileo and Reading Edge.

Supplier: Professional Vision Services Tel: 01462-420751

Cost: approx £3,700

Software systems designed for blind users

A number of standard OCR packages have been adapted for use by blind people by simplifying or rewriting the user interface to make it easier to use with speech output. These systems are intended for people who already have a PC with their own speech system, or in some cases a compatible sound card. They are, therefore, cheaper than standalone systems. They are also more complicated to use than standalone systems but can be more versatile in terms of storage, editing scanned text and transferring documents to other applications and PCs. They are widely used by people at work and are cheaper.

OSCAR

This is an older system meant for a DOS based PC. It will of course run in a DOS session from Windows 95 or 3 but requires a DOS speech system to read the menus and scanned text. The PC needs to be a 486 and have 8 megabytes of RAM. The accuracy if this system is lower than more up to date Windows based OCR software. It includes a Hewlett Packard flatbed scanner and floppy 3.5- discs. Manuals are provided on audio cassette and on disc.

Supplier: Sensory Systems, Tel: 0181-205 3002

Cost: £795

The Reading Advantage

This software comes on a CD-ROM, it is a new package based on Xerox Imaging Systems Textbridge Pro. It requires a Windows 95 Pentium PC with 24 megabytes RAM, a x 6 speed CD-ROM drive and a Windows compatible sound card. No speech software is required. The reading accuracy is excellent or as good as any OCR software currently available and comparable with the Kurzwei11000 described in the stand alone systems section. Again, do not expect to be able to read everything you come across. Some non-standard fonts incorporating script or ligatures (overlapping text), some coloured texts and backgrounds and badly copied documents with partially formed characters are not accurately readable with any OCR software. I was able to read an article from the Guardian newspaper without any mistakes. It is able to read 6 European languages as well as English.

Supplier: Pulse Data International, Tel: 01933-626000

Cost: £750, no scanner supplied.

Kurzweil 1000 software

Also available on CD-ROM this is the PC based version of the stand alone system. Its functionality and accuracy is the same as that version as it uses identical software. You will need a Pentium PC with 24 megabytes of RAM, a Windows compatible sound card. A Hewlett Packard 5P scanner is provided. As with the Reading Advantage a speech system is not required.

Supplier: Sight and Sound Technology, Tel 01604-792 777

Cost: £725

Cicero

Two versions of this software are available, one for Windows 3 and one for Windows 95. The Windows 3 version requires a minimum of a 486 PC with 8 megabytes of RAM and a Dolphin synthesiser ie Apollo 2 or Juno. The Windows 95 version requires a Pentium PC with 16 megabytes of RAM and any SSIL compatible synthesiser. It is based on Recognita ver 3 and is accurate for good quality text, columns and simple tables. The low cost of this system make it a good buy compared to the Kurzweil and Reading Advantage but its accuracy on difficult to read print is somewhat lower.

Supplier: Dolphin Computer Access, Tel: 01905-75477

Cost: £225 Windows 3, £395 Windows 95, £595 with Hewlett Packard 5P scanner

Standard (Commercial) OCR Software

The problems once associated with access to Windows operating systems for blind users have now largely disappeared. Windows speech systems are generally regarded as being equal if not better than their old DOS counterparts. This has opened up the market for OCR software for blind users to include commercial software once considered inaccessible. Coupled with this price and accuracy of commercial software is much better than it was a few years ago. So this final category is beginning to become the predominant OCR software used by blind people who use computers in their employment or education. For all these systems you will need an up to date PC with speech output and be familiar with using Windows 95. Training is available from specialist trainers and from some of the suppliers quoted above. Installation can sometimes be a problem for a speech user and help with installation may also be required. Training and installation costs are high at between £200 to £350 per day so, if you have a colleague, friend or member of the family able to help, you could save yourself a lot of money.

Omnipage Pro (version 8) This OCR software requires a Pentium PC with 16rob RAM (more RAM is better for recognition processing speed). You will also need a scanner and Microsoft Word version 6 or later. It runs as a menu item and its reading accuracy is as good as any, again with the exceptions mentioned before. A possible problem for some users is the wealth of functions available and the complex visual interface which could make it difficult to use for inexperienced Windows users. It can read 8 European languages as well as English.

Supplier: Many of the suppliers above sell Omnipage at or around the price below. It is also available from most software suppliers eg Action Computer Supplies, Tel 0800-333 333

Cost: £324 (CD-ROM only)

Text Bridge Pro

This OCR software is comparable with Omnipage it has the same system requirements and is the same OCR software used by Reading Advantage described earlier.

Supplier: Most software suppliers, many of the specialist suppliers quoted above.

Cost: £315

Home users who are not computer literate may the last to benefit from the OCR technology advances but hopefully we Will see cheaper and better standalone systems as PCs and software drop in price and improve in performance. The OCR software described above are the major commercial packages available and are known to work with speech output. There are numerous OCR packages available, some costing a few pounds only, and as I mentioned in the introduction, given away free with some scanners. Many of these remain to be tested with speech, those that I have looked at tend to offer less functionality than the paid for versions but some are quite usable. My final advice is to ask suppliers for a demonstration before buying. Take along your own samples to read rather than rely on them showing you easy to read text. The RNIB Resource Centre in London has a range of systems to demonstrate and you may want to ring them to arrange an appointment (0171-388 1266).

Dave Sullivan, RNIB Technical Consultant EDTU

Content author: joanna.shaw@rnib.org.uk

Last updated: 20/11/2008 11:13

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