Publications Archive

Focus, November 1998, 25

Summary: Newsletter for staff working with people with visual and learning disabilities

Editorial
Access to eye care for adults with learning difficulties - RNIB's campaign
Reminiscence with people with learning disability
Forgotten lives: exploring the history of learning disability
New RNIB Information Service on Complex Needs
Choosing your new home

A Newsletter for Staff Working With People With Visual And Learning Disabilities

Editorial

This year brings two 50th anniversaries, which have special meaning for Focus readers.

Article 1 of the 50 year-old Universal Declaration of Human Rights states: 'All human beings are born free and equal in dignity and rights'. It is timely to remember the thousands of people with learning difficulties whose rights and wishes have been ignored, and whose lives have been impoverished. This is especially true of visually impaired people, who were often institutionalised in early childhood.

In this edition of Focus, John Eno-Daynes reminds us of how people with learning difficulties in hospitals lost contact with the family and friends they cared about. Reminiscence, he suggests, can help make sense of traumatic events. Whilst this theme continues in other parts of Focus, we also look to the future and ways to assist people make individual housing choices.

The National Health Service is also 50 years old. Its birth was welcomed enthusiastically by post-war Britain. But the new service diverted resources from disabled people into acute medicine, causing a decline in care in many long-stay hospitals. The NHS was designed to help everyone, yet it has often failed to provide even the most basic health care for people with learning difficulties who often have greater medical needs than the 'general population'. Mencap's new report, 'The NHS - health for all? People with learning disabilities and health care' highlights inequality, ignorance and discrimination. The NHS clearly is not for all - and it urgently needs to change.

Mencap found only 47 per cent received an eye test in the last two years. A total of 69 per cent people over 40 had not had a recent test, at a time when they risk developing eye problems associated with ageing. People commented on a lack of publicity about the importance of eye tests and how to obtain them.

RNIB intends to resolve this and in the autumn of 1998 launches its long-planned Access to Eye Care Campaign for people with learning difficulties.

Access to eye care for adults with learning difficulties - RNIB's campaign

Gill Levy - RNIB Information and Practice Development Officer on Multiple Disability/Complex Needs

One of the mysteries of my job is why there are so many staff, carers and volunteers trying desperately hard to support people with learning difficulties - without knowing if or what they can see. I recognise their commitment but I am constantly amazed that dedicated people are willing to waste so much time and energy.

Fortunately, most people contacting RNIB are optimists, who want service users to have the best possible eye care and support. Some callers regard it as 'a basic human rights issue'. However, I often get lectures on why people are denied eye care and I occasionally get sarcastic comments

if I ask if a person has had an eye test - especially if he or she cannot talk
if I mention glasses
if I suggest that eye surgery for people with learning difficulties is a possibility - and not tantamount to sadism.

Last month I was asked to telephone a partially sighted young man who had requested a little telescope to watch his local football team. 'Can you dispel this nonsense?' the worker demanded. I suggested that the teenager be referred to a low vision clinic, who could prescribe different magnifiers (including hand-held telescopes) and recommend lighting and techniques, which would help him use his vision more effectively. From the 'tutting' down the phone, I knew instantly that I had not pleased the worker.

I believe most staff can successfully advocate for the people they care for. Staff who are unwilling to speak up for people with learning difficulties may seriously damage their lives. Perhaps these workers should come with a health warning!

The RNIB Access to eye care campaign aims to raise awareness of the eye care needs of adults with learning difficulties. We want people to have access to quality services everywhere in the UK. It is their right to expect the best possible treatment like everyone else - and we obviously want the social implications of visual disability to be better understood.

People with learning difficulties

Approximately 40 per cent of people with learning difficulties have eye problems and the more disabled a person, the more likely he/she is to have a visual impairment.

I am regularly told by staff that their colleagues consider an individual so disabled that it does not matter if he or she can see anything. This is frightening - ignoring sensory problems is a particularly subtle form of oppression and abuse, condemning people to unnecessarily restricted lives. Vision is the key to learning, communication and movement. It is believed that 80 per cent of all information which sighted people receive is through the visual path so it is crucial that eye problems are identified and appropriate help offered.

The recent Mencap study, 'The NHS - health for all? People with learning disabilities and health care' found that 53 per cent of people with learning difficulties had not had a sight test in the last two years, either at a 'high street' optometrist/optician or with a specialist, although 57 per cent recorded wearing glasses. Wearing old glasses will not damage adults’ eyes, but may make them tired and achy.

Eye problems

People with learning difficulties are at far greater risk of being born with eye problems than the 'general population'. They may also be susceptible to 'normal eye problems'. Some years we are told of people who have totally blinded themselves by constantly rubbing eyes which are itchy or sore from hay fever, conjunctivitis or infections. It is disgraceful that hay fever should be a cause of blindness!

While most people of all levels of ability need glasses by the age of 40, people with learning difficulties often lose their focusing ability at an earlier age than 'ordinary people'. And they are also susceptible to all the eye conditions common in ageing - such as cataracts. As people grow older, they are likely to experience deterioration in their vision, but this could be a sign of a treatable eye condition.

RNIB recommends that everyone have an eye test every two years - or more frequently if their GP or optometrist/optician suggest. People of Afro-Caribbean and Asian origin should have a test each year.

The Patient's Charter states that 'you can expect a thorough eye examination which should include checks for any disease or abnormality as well as checking your sight'.

Eye-tests

Most staff contacting RNIB remember only a little about their own eye test. They often forget the optometrist/optician gathering information about their general health and their family history, or the time spent examining their eyes. Callers tend only to recall reading letters on the Snellen chart. They may have decided that there is only one way to test sight.

I suspect this is why it is often wrongly assumed that it is impossible to test the sight of some service users. No one is too disabled to have his/her sight tested - but many people are denied their rights. Professional testing is the only way to get accurate information about an individual's vision and it can identify sight-threatening conditions.

There are different parts to an eye test, and all should be carried out:

the optometrist should ask about a person's history and symptoms
an eye health check - to look for eye diseases or damage (inside and outside the eye), to ensure that both eyes are working together, and to test the pressure inside the eye
'visual field' tests - to make sure someone has 'all round vision' (peripheral vision)
tests to establish the level of vision ('visual acuity') - if a person is short-sighted, long-sighted or astigmatic (when the eyes are shaped like rugby-balls not footballs so the vision is affected) and the need for glasses or contact lenses for near and/or distance.

Eye tests for people with no obvious means of communication

RNIB is of course aware that it may be difficult to obtain an eye test for someone who does not speak or use sign - but it can be done. Optometrists/opticians and orthoptists (who usually work in eye clinics) have been testing the sight of babies and small children for years, using single letters, picture charts or techniques which do not require the person to co-operate.

The first optometrist I approached about sight testing of profoundly disabled people expressed surprise that there was a problem, saying 'I can test the sight of a dog'. He quickly pointed out that he was not devaluing people, merely showing that everyone could be tested. Many optometrists have subsequently told me 'where there's a will, there's a way'.

An increasing number of optometrists and their receptionists have made people welcome and taken time and trouble over an eye test. One optometrist with his own practice thoroughly enjoyed the challenge of testing a man with 'problem behaviour' and told me that it was a pleasant change from 'seeing boring Joe Public'.

Preparing the individual, the escort and the optometrist for the test frequently ensures a positive outcome. Our recently revised blue Focus Factsheet, How to get the best out of sight testing of adults with learning disabilities and/or no obvious means of communication, includes tips and advice from a staff in a wide range of services.

Finding optometrists (previously known as 'opticians' or ophthalmic opticians)

Optometrists are qualified to test sight and complete important eye health checks. They also prescribe and fit glasses - although this work may be also undertaken by a dispensing optician.

As part or our campaign, we are creating a directory of eye care services for adults with learning difficulties. We have sent a questionnaire to optometry practices nationwide to ask if they are willing to test people with profound disability. Over 400 practices have replied. This shows commitment; most optometrists will not cover their costs. People with limited communication skills usually need a longer appointment than 'ordinary' people and seldom buy expensive glasses.

The returned questionnaires include optometrists who can use Makaton or British Sign Language. Several optometrists have children of their own with learning difficulties or do voluntary work in 'special needs' clubs and centres.

Mencap has recommended a supplementary fee for optometrists undertaking this work. RNIB is discussing this, as there are implications for other 'groups' of people, such as people with dementia.

Mencap's survey of optometrists showed that, for the majority, people with learning difficulties constituted less than 1 per cent of their workload. One in eight had received some training in learning disability, although over half would welcome further training, particularly in communication. Roslyn Band, Mencap Policy Officer and I will be writing to the universities which run optometry courses to reach the professionals of the future.

RNIB regularly communicates with organisations involved with eye health, such as the Department of Health and the Association of Optometrists. We have raised the needs of adults with learning difficulties with the General Optical Council as part of their review of training for optometrists and dispensing opticians.

I recently had meetings at the College of Optometrists with colleagues from our Eye Health Unit. The College had already made children and adults with learning difficulties a priority group and is enthusiastically supporting our campaign. They will publicise our efforts to develop a directory of eye care services. RNIB Multiple Disability Services is looking at other ways of working with the College.

Orthoptists - one 'hospital route' to eye testing

Where staff cannot find a local optometrist, some GPs are willing to refer adults to hospital eye clinics where they may be seen by orthoptists. Orthoptists, who work under the supervision of consultant ophthalmologists (eye doctors), play a major role assessing children and can adapt techniques for adults. They are qualified to work with people with eye movement problems – such as squints or double vision.

Whilst some orthoptists perform most of the same tasks as optometrists/opticians (except testing for glasses and prescribing them), others are restricted in what work they may tackle. For example, some orthoptists will not complete the full range of eye health checks.

The British Orthoptic Society is supporting our Access to Eye Care Campaign and will circulate RNIB leaflets. In addition, orthoptists able to offer support will be listed in the directory of eye care services we are preparing.

Dispensing opticians

Opticians supply and fit glasses. This work is sometimes undertaken by optometrists in small practices - but the big companies often employ opticians.

The Association of British Dispensing Opticians has invited me to send them an article on glasses for adults with learning difficulties for their newsletter.

Ophthalmologists (eye doctors)

Eye surgery is increasingly available to people with learning difficulties in some parts of the country. However we are regularly told of adults who have been refused an eye operations, usually for cataracts or keratoconus (a condition more common in Down Syndrome than other people). It is obviously important that second opinions are sought.

We have had an initial discussion with a consultant ophthalmologist about approaching the Royal College of Ophthalmologists. We need to gather more background information before things can proceed.

An eye care information pack is now available from RNIB in London. Single packs are free. The pack contains seven Focus Factsheets, covering subjects such as looking for eye problems, sight testing, glasses, eye surgery and low vision. Please telephone Gill Levy at the RNIB, telephone 020-7388 1266. Additional copies are available from RNIB Customer Services at Peterborough, PO Box 173, Peterborough, PE2 6WS, telephone 0845-7023 153 (for the price of a local call).

Leaflets for service users

I am working with a professional illustrator to produce two short booklets for adults with learning difficulties about getting an eye test, and choosing and looking after glasses. As with all leaflets we produce, they will be circulated for discussion before they are commercially printed. We will get help and advice from service users.

A third leaflet on cataract surgery is planned next year.

Access to eye care and access to hearing care awareness training packs and conferences

These distance learning packs are based on a conference held at Aston Hall Hospital in April 1997. The 'script' of the eye care pack is now almost finished, and the supporting video on eye testing has been put out to tender. The access to hearing care pack is not yet complete.

Both packs will be piloted at conferences across the country, organised by RNIB or members of the RNIB Certificate of Multiple Disability Trainers' Network. The first two events will be held in South East England but more are planned.

Your help with our campaign

We very much hope that you will widely promote the campaign. We also need you to

recommend local optometrists/opticians
give us feedback on the optometrists in our directory
let us know when eye surgery is refused
tell us of successful outcomes of eye operations
keep us informed about eye care screening programmes or health initiatives in your area.

Please contact me to discuss how we might help you assist service users gain access to eye care. Gill Levy, RNIB Multiple Disability Services, 105 Judd Street, London, WC1H 9NE, Telephone: 020-7388 1266

Free eye tests for pensioners

As part of the Government's Expenditure Review, all pensioners will be eligible for free NHS eye tests from April 1999. RNIB has been campaigning for the reintroduction of free eye tests, particularly for older people, since 1989 when charges were imposed. (Most people with learning difficulties qualify for free eye tests.)

RNIB Eye Health Campaign research found that more than 500,000 older people were put off going for an eye test because of the cost.

This measure should help increase the early detection of potentially blinding eye disease. However, RNIB is concerned that some pensioners will have to wait till April 1999 for a free test and so not receive prompt treatment for unidentified eye problems.

For details on free NHS eye tests and help with the cost of glasses or contact lenses, please telephone or write to: RNIB Welfare Rights and Community Care Advocacy Service, 105 Judd Street, London WC1H 9NE, Telephone: 020-7388 1266

Reminiscence with people with learning disability

John Eno-Daynes, County Development Worker: Arts and Disability, Rethink Disability, Suffolk

I have been involved in reminiscence work for over ten years, working with a variety of groups of older people. I now believe that helping older people with a learning disability re-discover their past is a particular skill, which requires even greater sensitivity and imagination than other types of reminiscence work.

For so long people with learning disabilities were regarded as 'the mentally handicapped'. (Earlier labels sound even more offensive now.) They had little or no sense of themselves - as individuals or as an oppressed group of people - and they were not encouraged to look back and make sense of their lives. In short, their lives and their experiences were often viewed by others as worthless - of no interest to anyone.

Living in large institutions (only relatively recently called 'hospitals') people were kept out of sight and shut away from the world. Outside, all sorts of new and strange ideas developed and the world changed. Inside these closed 'communities' life went on as 'normal' - often very structured and ritualised. The institutions and the people who lived and worked in them were bound by bureaucracy and time-tables but in their own way the institutions offered a kind of security to some of the people.

Whilst there is a tendency these days to denigrate everything to do with the old institutions, there were often loving and close relationships among the patients themselves and among staff and patients. We must not, of course, forget that abuse was also common. However these friendships and attachments were frequently ignored when people moved into the 'community', and lost contact with one another. What might have been a joyful experience was often tinged with grief. When I have worked with people with learning disabilities, they have often wanted to talk about these affectionate and caring relationships, and also about the tasks they undertook within the institution.

Reminiscence work in a long-stay hospital

Staff were wary and sceptical when I began my first reminiscence project with people with learning disabilities in a large hospital.

We began in small groups of four and five. It was difficult to explain to participants that we were meeting together to talk and share memories and that was all; there was no hidden agenda. It was not a test - just a chance to have a conversation. People who have lived in institutions for many years are not used to being consulted, nor having a discussion. Unless they are alone with friends, they tend to talk to staff members or expect staff to speak for them. It was hard to get them to understand that I was only there to facilitate their conversations and not to lead or direct them.

I have found it important to establish the structure of the group quickly and how participants can work together. They need to feel relaxed and welcome and to know about the structure of the project, the sessions and the 'domestic arrangements': when the session starts and finishes, when there will be breaks for tea, where the toilets are, why they are attending the group and so on. It is important for the facilitator to know if they have asked to be there or if a staff member suggested they should attend. Reminiscing should be a voluntary activity rather than something one does for other people.

People with learning disability may have had no experience of talking in groups, so it is also useful to establish ground rules in the first or second session, not imposed by the facilitator but through discussion with the group. It may be that one or two sessions have to take place before ground rules can be set. Participants may not understand the concept of rules and that they are not imposed by the staff but they are essential for a successful and harmonious project. It may also be useful to write them down so that they can be kept for reference.

One way I begin reminiscence work is by demonstrating the importance of individuals' contributions. I ask people to bring something of importance to the first session; something they care about, or perhaps a thing they have made, a photograph, a toy, or an item of clothing. I can then ask them to share their thoughts about that object and begin to show them that their personal treasures and thoughts about these things matter to other people. People often need to be reassured that their feelings are relevant and important, just as their ideas and memories of the past are important.

This simple activity can be the basis of a reminiscence group. It is then easier to introduce the idea that people's thoughts about the past are interesting and special. The past and our links with it are important to all of us; they are a vital part of our understanding of the present and the future. It is our relationship with our past that helps us to make sense of who we are. Talking about the past in a secure and warm environment can help to validate experiences and make people feel good about themselves.

Initial session

The best initial sessions start by explaining the purpose of reminiscence and move on to using 'trigger objects' - things that remind us of people, places and events. Pictures, tapes of songs, videos and items of clothing can all be useful in helping people recall the past.

Reminiscence is partly about trying to stimulate memories through all the senses. While most people find that pictures and songs successfully jog their memory, it may be useful to use specific objects which can be held and felt, and also smells and tastes. These may be natural smells, such as flowers or bottles of essence, medicines, smells of cooking, bags of old-fashioned sweets.

Memories may just surface and be enjoyed and shared for what they are. However some people wish to record and denote memories by making things, like collages, which have been annotated with participants' specific memories.

We made up a collage of film stars that the group talked about. We wanted the collage to include some of the memories people had shared, so we wrote on it quotes from people in the group. For example next to a picture of Judy Garland, we put 'Maureen remembers her Mum taking her to see the Wizard of Oz at the cinema and they bought hot chestnuts afterwards'.

Participants may even choose to make something more permanent such as a tapestry or a tape of them singing all the songs they have remembered.

Individual reminiscence

Sometimes it becomes clear that an individual has a lot to share but is uncomfortable doing it within a group; he/she needs to work on a one-to-one basis.

It is important to ensure that such conversations take place at a specific time in a specific place. When working with one elderly lady I would collect her from the Villa where she lived within a large hospital. We would go to our 'special place' - a small interview room with a drinks machine next door. Every Wednesday we would spend an hour there and drink hot chocolate from the machine. This would be followed by a stroll to a cafe nearby when we would continue our conversation and drink tea.

It was the same every Wednesday for two years. To me the surroundings were not particularly inviting but Dorothy had chosen them. She felt comfortable and secure there, able to talk to me. She would tell me about things she liked that had happened that day, or the day before or fifty years ago. She might mention the good bits, the bad bits and the things she found confusing. Nothing was ever written down or taped because Dorothy did not want that. She simply wanted a confidante who would listen and not interrupt, and who would honour and help her to validate her story.

Staff often saw these sessions as 'minding' - a skive where I got paid to take someone to tea. My time with Dorothy was very relaxed, informal and comfortable, when she could share her important stories with someone she liked. The lack of pressure on her to conform and her feeling of being in control meant that she would talk about all sorts of things she had rarely chosen to reveal to other people in the past. There was an understanding between us that I would never break our trust and her confidentiality. This helped Dorothy to let go of some of her more difficult memories and fantasies.

Marigold's life story book

Another person was different. We shared similar little rituals in terms of the setting and the time. We usually met in the same room and went to the same Co-op cafe for passion cake and coffee. On the way we would have a squirt of a spray from all the 'smellies' in the Body Shop. However, Marigold wanted more from her memories than Dorothy. She had to write them down and explore them in a different way. She had a need to try and make more direct connections with the past. She wanted to contact members of her family, talk about the places she had lived and played and visited.

We began by having many conversations about her past and actively exploring them. Marigold is visually impaired and uses a wheelchair. Yet in our heads we walked around the bungalow where she had been brought up, looking at each room in turn and we drew plans on paper.

By the end of a year, I felt I knew the colours, smells and textures of that bungalow almost as well as she did. We talked about events, people and pets. She had no photographs from her past, except one of her mother. However, we gradually made a 'life story book' from drawings and snippets of conversation that had been taped and transcribed.

In time, the work became more intensive as Marigold prepared to move from the hospital into the community and make connections with the outside world. It was as if plans for this move made her want to remember and understand how things were when she had last lived outside the hospital. We wrote letters to various long lost relatives and acquired additional photos from the family album. Because of her poor vision, we enlarged them on the photocopier and on to acetates which could be projected on to a wall.

We made trips back to her former home. Even though the bungalow had been demolished years before, we visited the site and paid homage to Marigold's past and took photographs. Similarly, we visited her parents' grave and laid flowers, recording the whole process on video so that she could watch and 'revisit' the cemetery at any time. We took photographs from the TV screen when the video played and included these in her life storybook.

When we made our reminiscence trips we brought back very personal mementoes:

potatoes from the fields where Marigold had picked peas as a child with her mother. She cooked these potatoes in a pie for the people she lived with

a photograph of the post box she passed every day on her way to school
a photograph and recording of the person she met, who had worked with her Mum.

Gradually we built up a rich collection of very personal reminiscence material that could be used more and more intensively. It acted as a record for Marigold to keep, and one which she could choose to share with staff in her new home.

Marigold and I found the use of 'reminiscence documentation' can be useful for new staff in building relationships with service users. She has now been living in the community for three years and each time she has a new key-worker she can choose to share some of her past with that person. This helps to create a rich relationship over a shorter length of time than if the worker had to spend time getting to know a person 'with no history'. In fact her key-worker knows about Marigold's past from Marigold's perspective - rather than from the formal notes and observations made by staff.

Over time Marigold's reminiscences led to deeper conversations about religion, her philosophy of life, her attitudes to the things that matter to her. We began to work together in making representations of these thoughts through writing prose or poetry and visual arts.

She chose to share this on a general basis (leading at one point to an exhibition in a local gallery). This inadvertently demonstrated to the staff how reminiscence work could change other people's perceptions of us. 'Hidden depths' was the phrase used by one staff member, which we took to mean: 'what a surprise to think there is all that going on in the head of someone I regarded as a old blind lady with learning disability who sits in a wheelchair'.

Conclusion

I hope that this article has demonstrated the scope of reminiscence work. Reminiscence work with people who are old and who have additional disabilities requires sensitivity, imagination and creativity.

Over the years my faith in people with learning difficulties has always been honoured. They will show me the path to pursue if I listen, do not interrupt and take my lead from them. In the end, reminiscence work is more about being a good listener and a facilitator for the person's wishes.

Start talking and listening to people about their past and everyone has a rich seam of stories to share. Start talking and sharing now!

Simon Labbett, RNIB Community Arts Development Officer, writes:

Reminiscence work with older people has become a commonplace activity in the last 15 years. Work with people with learning difficulties is beginning to receive recognition, but is less documented. I am in the process of putting together an information pack on organisations and resources for reminiscence work, but in the meantime would recommend people contact Age Exchange.

Age Exchange (11 Blackheath Village, London, SE3 9LA, telephone 020-8318-9105) is a marvellous place to browse - a mixture of an old-fashioned shop and a museum, containing books and 'artefacts'. Age Exchange runs training courses in a variety of reminiscence-based activities, including ‘Reminiscence and learning difficulties'.

They also loan out boxes of objects based on set themes, such as 'at the sea-side', 'in the kitchen', 'born in the Caribbean'. However although the 'ready made' boxes of objects rarely fail to trigger memories and generate discussion, there is no substitute for collecting your own bits and bobs - preferably with the person you are working with. Unfortunately many adults with visual and learning disabilities have few possessions, but it is normally possible to gather enough information about their past experiences to help recreate sensory experiences.

I would welcome people contacting me to discuss reminiscence work with visually impaired people of all levels of ability.

Simon Labbett, RNIB Holidays and Leisure Service, 105 Judd Street, London WC1H 9NE, Telephone: 020-7388 1266

Forgotten lives: exploring the history of learning disability

Reviewed by Gill Levy, RNIB Information and Practice Development Officer on Multiple Disability

This is a fascinating book for anyone interested in the history of learning disability. It explores a long neglected topic from a variety of perspectives - so many perspectives that some readers have complained that it is too ambitious. However, I found all the material and illustrations interesting and it has helped me counter some of the myths about what used to happen to people before society's supposed 'enlightenment'.

Two major themes are highlighted by the contributors. Research on this subject is infancy and there is enormous scope for innovative work. The book includes many practical suggestions to help people who are setting out to do small scale historical research. I wish Forgotten Lives had been available when I began trying to find out why so little had been done for visually impaired people with learning difficulties - when a need had been identified over a hundred years ago.

The second theme is the relationship between the past and the present. The book shows how a history can help us understand the present lives of people whose experiences have been so different from our own. It illustrates clearly how attitudes and patterns of care, which exist today, are rooted in the past. This is certainly true for me in my work at RNIB - some days I think nothing has changed since the 1920s or 1930s.

Perhaps two chapters deserve special mention. Chapter 2 is Mabel Cooper's autobiography, which was constructed from tape-recorded interviews. It is one of the few recorded life stories of a person with learning difficulties. I hope there will be many more as the 'consumer's voice' is sadly lacking in most books and printed material over the years. Mabel describes the terrible noise when she first arrived at St Lawrence's at the age of 7 - 'you think you're going to a madhouse. When you first went there you could hear people screaming and shouting outside. It was very noisy but I think you do get used to them after a little while...'There were bars on the windows - 'it was just like a prison'. There were no toys for the many children and no school. People were not allowed to wear their own clothes and men and women were segregated on wards of 75 patients.

Mabel was fascinated by children when she left hospital. 'When I first came out of there, I thought the children were midgets'. Mabel was not used to seeing children running around, only children in wheelchairs. She had never been on a bus or a train, because residents were never taken anywhere. She describes her first impressions of 'the outside world' and her life since she left St Lawrence's, including her involvement with the Self-Advocacy Movement. She talks of her work preparing other people to move into the community.

Perhaps the reason why I find Mabel's words so painful to read is that she was in St Lawrence's in Caterham - the first long-stay hospital I visited in the 1970s. I had nightmares for months afterwards. I found it hard to believe that a so-called civilised country could treat human beings that way. I am still horrified. Other chapters in the book contain material which continues to shock - but sadly much of the information is horribly familiar.

Equally interesting is Andy Stevens's chapter, recording the history of an institution: the Royal Eastern Counties Institution at Colchester. He examines some of the methods involved in recording institutional histories and has gathered much of his material by talking to former patients or 'survivors of institutional treatment' and staff.

The Royal Eastern Counties Institution (later Turner Village and now New Possibilities NHS Trust) was run by members of the Turner family for decades. Andy Stevens explains the organisation of activities, and how patients were seen as a valuable source of labour.

Male jobs included working on the institution's own farm, mat shop and boot shop - but the highest status male patients were bricklayers' mates. On the female side, the highest status patients would be the matron's maids, but the 'higher grade' women were sometimes afforded a status almost equivalent to staff. Many worked as domestics outside the institution'.

Some of the 'more able' patients were responsible for the care of the 'lower grades' (an expression previously used about less able people), as was common in institutions. There were pecking orders for staff too - with different structures for the male and female staff.

Control was exercised in a variety of ways, with one small room (not often used) for segregating women. On the male side, however, 'violence by patients to nurses and vice versa was more common'. There was a punishment villa. Sexual behaviour was also carefully regulated - ensuring adult patients were seen as 'boys' or 'girls' was one of many ways to deny their sexuality.

This book does not tackle the thorny question of 'whose history is it?' Further books and conferences will consider this. Whilst some people with learning difficulties regard it as 'their history', I believe there is a role for historians and practitioners too.

My view - and that of the editors of the book - is that we can all learn from the mistaken policies of our predecessors. Segregated services continue for certain 'groups' of disabled people. Staff and parents contacting RNIB may complain that some small 'homes' are just as rigid and inflexible as larger institutions, with workers behaving as if they were on an 'old style' hospital ward. But I do not live in these places and I find it hard to imagine how people's lives must have been, which is why the voices of people with learning difficulties must be heard.

This book makes me wonder what happened to the children with learning difficulties I knew in my primary school and Girl Guides. They suddenly vanished 'to get special help' and were never heard of again. It makes me think about how unquestioning people have been - and how as children (and sometimes adults!), we accept that other people know best.

Scandals and crimes continue against people with learning difficulties - but what we know about are probably only a small fraction of the terrible things which actually happen. Much is hushed up or not reported. Little is said, for example, about the thousands of disabled people murdered by the Nazis. We do not know of the long-term emotional damage done by many of our services and people's suffering. We need to understand that some of the policy developments in this country were based on misconceptions: that at one time it was believed that people with learning difficulties presented such a risk to others that they should be removed from society.

As Paul Taylor reminds us in the foreword of this book: 'those who cannot remember the past are condemned to repeat it'.

I hope there will be many more books on the subjects covered by Forgotten Lives.

Forgotten lives is edited by Dorothy Atkinson, Mark Jackson and Jan Walmsley. It is published by BILD Publications and costs £18.95 plus 5 per cent postage and packing. ISBN 1 873791 84 4.

It is available from: BILD Publications, Plymbridge Distributors Limited, Plymbridge House, Estover Road, Plymouth, PL6 7PZ, Telephone: 01752-202300

Do they still have trams?

Andrew Holman of Values into Action has produced a slim little book about the experiences and views of former residents of a long-stay hospital and those people who are planning to move out.

The story is in two parts. The first section is the report of a consultation of people with learning difficulties who were facing 're-settlement'.

The consultation approach and process sought not to criticise hospitals or staff, but to find out the views of the people who live there. It was a process that overcame the greatest difficulty that residents suffer from - not their learning difficulties but their lack of information. The many years spent in hospital had left them unaware of many aspects of life outside the institution.

The second part contains the stories of two men who have moved out of hospital and now live in their own homes. This is what they wanted to say. What links the two parts of the book are common themes: the experience of people living in hospitals and how that affects decisions about the rest of their lives.

Do they still have trams? costs £6.95 plus £1.50 postage and packing and is available from: Values into Action, Oxford House, Derbyshire Street, London E2 6HG, Telephone: 020-7729 5436, ISBN 0 903945 42 8

Editor's notes: The information needs of many visually impaired people are often overlooked - especially people with learning difficulties. Much of the material for their sighted peers is never made available on tape or in other formats. Focus 22 contains information about writing for adults with learning difficulties, and taping it.

'Of black bags and ordinary lives', an article by Jean Collins of Values into Action, was published in Focus 12. This considers some problems faced by blind people in long-stay hospitals. Jean has also written three books on resettlement of people with learning difficulties from institutions. Details from Values into Action, address above.

Objects of reference

Keith Park - Greenwich Visual Impairment Service

Objects of reference have much to offer people of all ages with communication difficulties of one kind or another. However, in order to get started, a little planning is needed.

This is a brief introduction to the use of objects of reference. It includes a description of what objects of reference are, who uses them, and why and how they are used. All of the examples are of real people who are using objects of reference today as a means of communication in a variety of environments.

What are objects of reference?

Objects of reference is a term that describes the use of objects as a means of communication. Objects, just like words, signs and symbols, can be made to represent those things about which we all communicate: activities, events, people, ideas, and so on. Just like words, signs and symbols, objects of reference have to be chosen with care!

Who uses objects of reference?

For quite a long time, objects of reference have been one of the communication systems used by people who are deafblind or who have a visual impairment and learning difficulties.

They can also be used as a means of communication for people with communication disabilities, who do not respond to sign, symbol or photographs. They may also be used be used by people who have problems with short and long term memory, such as people who have Alzheimer's Disease.

Why are they used?

Objects of reference can be used for a number of reasons. They can be used as a 'bridge' to more complex forms of communication such as sign, symbol or word to help develop an awareness and an understanding of the environment, for example by knowing what is about to happen as an aide to memory, as a means of time-tabling or sequencing the activities of the day or week to help people make choices about the activities they wish to do And of course they can be used by people of any age.

How are they used?

Objects of reference have a common sense appeal in that they seem quite straightforward. For example, it might appear obvious to use a purse to mean 'we are going to the shops' or a seat belt to announce 'we are going out in the car'. Or is it?

Experience has shown that different objects can mean different things to different people. The following list of categories of objects of reference may help people choose the type of object most appropriate to the needs of the individual.

Here are some examples of the categories of object use.

1 Real life objects used in the activity

Examples: Dawn likes to have a bath. She is helped to feel and smell the bubble bath as it goes in to the water. The bottle of bubble bath is her object of reference for 'bath', and she uses it to help her understand what is about to happen to her.

Chris enjoys cooking. He has a wooden spoon that is kept on a piece of card. It is removed and given to him to indicate that the cooking activity is about to begin. He uses the spoon in the cooking, and when the activity is finished the spoon is replaced on the card until the next time it is used.

2 Identical objects not used in the activity

Djafir enjoys cooking. He has a wooden spoon, mounted on a piece of card, that indicates 'cooking'. The spoon stays on the card and is not used in the activity.

3 Objects with a shared feature

Lucy enjoys sitting in the swing chair, which is made of cane material. She has a small twig of this cane to indicate this special chair. When she wants to sit in the chair, she can take the piece of cane to someone. Lucy hands over the piece of cane, indicating her choice of activity.

Janet enjoys lying on the trampoline in her back garden. She has a piece of the cushion material that she can use to make a request to someone to help her get on to the trampoline.

4 Miniature objects

Nazma has a miniature spoon from the doll's house to indicate dinner. At school her teacher lays out a number of miniature objects each day to indicate the sequence of activities. Nazma uses a miniature brush for 'washing face and brushing hair', and a miniature car for 'going in the car'. Most of Nazma's objects are miniatures, and these have been chosen because she has demonstrated that she understands the connection between the object and the event.

5 Abstract objects

Jessie loves to go and play in the garden. He has an athlete's wristband, that is on a board next to the door, which is used to indicate 'going out in the garden'. When he wants to go out, he takes the armband from the board and gives it to his mother. She will then go outside with him for a few minutes. Jessie's mother has learned to put out the object of reference for going out in the garden only when it really is an option! It is not helpful to offer him a choice which she has no intention of carrying out!

These categories are only a guideline for choosing objects of reference. The important point to remember is that what is relevant to one person may not be relevant to another. This means that the procedure of selecting objects of reference may be different for each person. A person who uses 'real life' objects (category 1) may be not be able to understand abstract objects (category 5). It will depend upon the strengths and needs of each individual.

However, if one consideration is the category of object of reference, a second consideration is the reason for choosing the idea or concept to which the object refers. A useful rule of thumb is the MMF rule: this refers to choosing objects of reference according to what is Meaningful, Motivating and Frequent for each individual.

The MMF Rule: Meaningful, motivating and frequent

1 Is it meaningful?

One of the vexed questions with which schools have to wrestle is one of reconciling the demands of the National Curriculum to individual needs.

Katie attends a school for children with severe learning difficulties and participates in a number of activities that are described as being 'English', 'Maths', 'Science' or 'Religious Education'. Katie is a very active person who does not always like to sit still for tabletop activities.

To make a communication approach meaningful for her, whenever Katie is expected to sit at a table and participate - or even remain seated at the table - she has a string of beads. The beads represent 'sit down with the others and do things'. Initially she held this string of beads while seated at the table, but as time progressed she has learned to place the beads over the back of the chair and to co-operate with the group activity.

When the activity is finished, a member of staff holds out a 'finished box' to Katie. Katie drops her beads into the box and then knows that the activity is over and she is free to walk away. The teacher can classify the activity according to the requirements of the National Curriculum, and Katie can - and does - recognise the activity as 'sitting down to do work'.

2 Is it motivating?

One of the main reasons that we learn to communicate is to share information. Sharing information relies on people being motivated to communicate - it needs to get results and be rewarding.

Jill has never communicated at the meal table, but she becomes quite animated when she joins in the parachute games. She has an object of reference for 'parachute games' (a regular activity) which is a handle from the edge of the parachute material. Efforts to teach Makaton to Jill have met with little success to date, but she finds using the object for parachute games brings more results. She has little interest in learning to use signs or objects which other people think are more important - such as toilet and biscuit!

3 Is it frequent?

Objects of reference are most likely to be accepted as a form of communication by people if they are frequently used.

Geoff loves to go to football matches. For a variety of reasons, he can only go about twice a year, and so he does not have on object of reference for 'football match'. In fact, his carer suggests that it would probably be distressing for him to have one because it would remind him of the fact he cannot go as often as he would like.

Geoff goes swimming every fortnight, so he has an object of reference for this activity - his swimming trunks.

The three Cs: care, consideration and consistency

In conclusion, objects of reference have much to offer people with communication difficulties. However, many wonderful attempts at helping people with learning difficulties communicate are undermined by the very people who want them to communicate.

Using objects of reference, as a colleague recently said, requires the three C's: care, consideration and consistency. This refers to:

Care in thinking through the reasons for using them
Consideration of the factors involved in choosing them
Consistency in using them

To have a system of communication that gets lost or just fades away is obviously to be avoided at all costs - everyone has the right to a communication system and a voice and a choice.

Keith is happy for people to contact him to discuss the use of objects of reference with children and adults. His telephone number is 020-8316 1068.

New RNIB Information Service on Complex Needs

In August 1998, Sally Hardwick joined Gill Levy (Information Officer) and Vicky Costa (Information Assistant) at RNIB Information and Practice Development Service on Multiple Disability in London.

At the same time the Service will extend its brief beyond adults with learning difficulties to include people with complex needs.

RNIB is currently gathering information about gaps in existing services for visually impaired people. Gill Levy has identified four 'groups' of people who may benefit from the new service:

people with communication problems (including deafblind people)
people who might benefit from electric wheelchairs or who have 'special' mobility problems
people with mental health problems (including dementia) and behaviour which challenges services (often caused by head injury)
people who already have complex needs, but whose needs are changing as a result of increasing frailty, impairment or illness.

At the present time Sally Hardwick and Gill Levy are contacting a variety of organisations to discuss what problems they have encountered and how RNIB might help in the future. They would welcome advice and comments.

The Service is intended to be proactive. It aims to produce its own material and newsletters concerning people with complex needs, run workshops and other events as appropriate.

Multiple Disability/Complex Needs Services are now part of RNIB Social Services Team, joining colleagues who provide a range of services to local authority social services/social work departments.

Accreditation scheme for courses which teach physical interventions/restraint

John Harris of the British Institute of Learning Disabilities writes:

The use of physical interventions, or restraint, to manage challenging behaviours presented by adults and children with a learning disability, is a matter of considerable concern to professionals, care staff, family members and those responsible for developing and implementing government policy.

After the tragic death of Zoe Fairley (who died after being restrained on the ground by four careworkers), there can be little doubt about the importance of effective organisational policies. Good staff training is also crucial to ensure that the welfare and safety of service users is not put at risk when they are submitted to physical interventions. At Zoe's inquest, the coroner called for guidelines to be drawn up.

Following the publication of 'Physical Interventions: A policy framework' in 1996, the British Institute of Learning Disabilities and the National Autistic Society have been funded by the Department of Health to establish an accreditation scheme for courses which teach physical interventions.

We would like to hear from anyone who provides training on physical interventions/restraint for staff working with adults and children with a learning disability and/or autism.

We should also be pleased to receive comments from any individuals or organisations who have received training on the use of physical interventions.

John Harris, Chief Executive, British Institute of Learning Disabilities, Wolverhampton, Road, Kidderminster, Worcestershire, DY10 3PP, Telephone: 01562-850 251

Choosing your new home

Reviewed by Ian Crombie and Jim McLay - RNIB Springfield Service

Introduction

For most people, choosing a new home is one of the most important decisions they ever make. Because there are so many things to consider, it is never straightforward. People with a learning disability should be involved in making decisions about where they live - but the complexity of the task often seems to present insurmountable obstacles.

'Choosing your new home' has been designed to help people with a learning disability take an active part in deciding where they want to live. It has been based on the Life Experiences Checklist by Alistair Ager. The pack includes

Instructions
Sheets for summarising residential options
Sheets for identifying home choice priorities
Boxed set of 61 illustrated 'prompt cards'.

This step by step guide helps service users collect information about houses which may be suitable, and consider what is important to them. It suggests questions to ask staff and people living in the houses, including whether a month's trial period is possible.

The reviewers

Ian is 49 and has a very supportive extended family and close circle of friends whom he meets on a regular basis at the RNIB Springfield Service (a day service) in Glasgow. Jim works at Springfield.

Jim says that Ian lives a very happy and productive life with various interests, his favourite being his love of music which he can dance to. Ian agrees.

Since the death of his mother some years ago, Ian's life has been unsettled, and he has had to cope with much insecurity. At present Ian lives in a community hospital. This has been an emotional and confusing time for him. He lived with his mother in the family home, with all his personal possessions around him - his extremely large record and tape collection, radio, and television. He usually had the freedom to do what he wanted, with the support of his mother. Then suddenly this all changed and she was gone.

Jim feels that testimony should be paid to Ian for his strength, bravery, patience and understanding of his change in circumstances as well as his sense of humour and strong personality. Jim reckons that at 49 Ian is unlikely to change! Ian knows what he wants out of life and will work with his family and support staff until he gets it. It was therefore a great relief that Ian welcomed the news that he was to have his own home in the community after what seemed to everyone a period of endless waiting.

However it was not until they started to look at the 'Choosing your new home' booklet and cards that Ian and Jim realised the potential freedom and fun that the move might bring.

Jim felt the more they discussed and looked at the choices Ian had to make, the more excited they became.

As a staff member, Jim found it extremely pleasing to work with Ian, exploring Ian's vision of how he would like his life to be in the future. Jim viewed the booklet as informative and imaginative, saying that it seemed to raise all the issues which really mattered to Ian.

Initially Ian would reply to the questions and suggestions on the cards: 'Oh what a good question!' as he sat deep in thought. However it quickly became clear to both Ian and Jim that Ian was on the brink of regaining control of how he wanted to live his life, having had very limited choices recently.

At first Ian was slightly apprehensive. It took him a while to get used to the idea that not only were people asking him how he would like his new home to be, but these cards were suddenly making him think of questions he would like to ask but had never thought of. Jim felt that this was when Ian finally realised that there was going to be a new beginning.

Ian's responses to 'Choosing your new home'

Ian felt that section 3, which considers relationships, was one of the most important things to be discussed. When Ian and Jim addressed the subject of the staff in the house, Ian was pleased that staff would have time for private chats with him, which is extremely important for him.

It was also reassuring for Ian to hear that staff would support him in keeping in contact with his family and friends and that the people who are important to him would be welcome to visit him in his new home. Ian was also happy to hear that staff would support him with outings to the local shops and cafes for tea and so on.

Other important aspects the cards raised for Ian were that he would have his own front door key and his own room where he could have privacy. He liked the idea that there might be residents' committee where everything that happened in the house would be discussed; this really appealed to him.

Using the cards on a visit to his new home, Ian was also pleased to hear that he would have more control of his finances with the help of the staff and he would be able to buy his own clothes and go on shopping trips. He was also glad to hear that he would have a say on how the house was decorated. He even suggested he would help out with the decoration, as well as the general housework.

Jim's response

Jim felt the booklet was extremely useful in helping a staff member support a person with learning difficulties move into a new home.

Jim stresses that moving home is extremely stressful for everyone, but the 'Choosing your new home' booklet and cards break down the process into carefully detailed stages and questions. Things are much less stressful when you know what to ask staff and residents in the new setting and what to expect after you have moved in.

'Choosing your new home', by Biza Kroese, has been produced by the British Institute of Learning Disabilities in association with Dudley Priority Health. It costs £23.00 plus 5 per cent postage and packing and is available from Plymbridge Distributors Limited, Plymbridge House, Estover Road, Plymouth, PL6 7PZ, Telephone: 01752-202 300

Make your move

'Make your move' is a video guide to independent living, with an accompanying booklet, for people with learning difficulties. It also provides information for people's supporters, providers and purchasers.

The video is audio-described, making it accessible to visually impaired people, although the sound quality is sometimes poor so it can be hard to hear the script over the music. The booklet is written mainly in large print, with photographs which some people with low vision find easier to see than cartoons or line drawings. (Editor's note: Audio-described videos describe scenery, facial expression, body language and action during gaps when no one is talking in the video).

The video shows Shirley and Ron who play the roles of people who are unhappy in their current homes. They decide to travel around the country looking at how different people with learning difficulties have managed to get what they want. Ron, one of the stars of the video, is visually impaired. This is unusual - blind and partially sighted people with learning difficulties are often 'invisible' and not seen in books, videos and other material.

Shirley and Ron visit Charlie who has chosen to live alone with support; Jeremy and Jon who share a two bed-roomed house and Clifford and Jean who are a married couple who live in Wiltshire. The video shows other options too:

Anna, who now lives with Wendy, a former staff member in the group home where Anna lived.

Brian has higher support needs, but found it hard to live with other people who often got in the way of things he wanted. He now lives alone, and has support all day and night and has the support workers he chooses.

Kirk, who lives with his sister. She helps him organise his support, which is paid for by a version of Direct Payments. (Direct Payments are payments made by a local authority to an individual, whom it has assessed as needing Community Care Services. The local authority makes the payment instead of arranging the services it has assessed the person as needing).

The first part of the video shows real people who really are in control of their own lives, living in their own homes. The second part of the video and booklet asks three questions:

Who, if anyone, do you want to live with?
Where do you want to live?
Who should support you?

The booklet provides advice on further reading on assessment, housing and support in different ways, as well as renting and buying your own home and how to purchase support for individuals. It also lists organisations offering help and advice.

The video and booklet cost £30.00 for organisations and £10 for people with learning difficulties.

For further details contact Values Into Action, Oxford House, Derbyshire Street, London, E2 6HG, Telephone: 020-7729 5436

'Low support' options for people with learning difficulties

Most people with learning difficulties have little choice of housing and support options; residential care continues to dominate. This is a particular problem for people seen as a relatively low priority for community care packages, with few effective 'low support' alternatives to residential care being developed. The networks' provided by KeyRing offer one possible model for such services.

Research by Ken Simons found that this model provides reliable, affordable support in a way that is liked by those who use the service. We have outlined some of Ken's findings.

About KeyRing

Services provided by KeyRing are based on the idea of 'living support networks'. Small networks of up to nine people with learning difficulties are established in a particular neighbourhood, using ordinary social housing. Each individual has his or her own flat, all within walking distance of one another.

The process of starting a network begins with the appointment of a 'community living worker' whose role is to help people settle into the network, and to provide continuing support. In return for free accommodation (plus the payment of some household bills) the community living workers commit an average of ten to twelve hours a week to assisting members of the network. The community living worker lives as part of the network, in the same neighbourhood as the KeyRing tenants. Indeed everyone in the network will know where everyone else lives and will have his or her phone number.

The community living workers are themselves supervised and supported by network mangers, who also work directly with tenants. Mutual support by the tenants is encouraged and facilitated thorough a tenants' group in each network. KeyRing currently has 15 networks up and running, most of which are scattered across the Greater London area.

For many tenants, KeyRing provides the combination of housing and support which enables them to achieve their aspiration of living in their own home.

Living support networks appear to offer an effective way of helping people maintain their tenancies; for example, in longer standing networks, three-quarters of the original tenants are still in their flat.

Tenants saw the support provided by KeyRing as critical; few thought they could manage without it. The way the support is provided generally meets with the approval of tenants; none of those interviewed would have preferred some form of shared accommodation.

Many of the tenants had mixed relationships with local communities. As a result KeyRing had developed a range of approaches to help tenants manage these relationships.

Living support networks represent a relatively inexpensive option; most networks effectively pay for themselves through savings in residential care.

Even allowing for the other services used by tenants, KeyRing remains a relatively inexpensive option. The average cost per KeyRing tenant in a well-established network is just under £50 a week. If, on average, just over three out of the nine tenants would otherwise have been using residential care, the net savings made by their move into a KeyRing network would as a minimum pay for the whole network. Historically, this is almost identical to the proportion of tenants who joined KeyRing from shared living arrangements. Given that some of those joining KeyRing from other sources would have probably also needed a more expensive alternative had KeyRing not existed, then there is considerable potential for using KeyRing-style services to underpin a wider supported living strategy.

To obtain a copy of the full report 'Living supported networks: the services provided by KeyRing', contact: Pavilion Publishing (Brighton) Ltd, St Georges Place, Brighton, East Sussex, BN 4GB, Telephone: 01273-623 222

Quoting ISBN 1 900600 22 6, price £11.95 plus £1.50 postage and packing.

KeyRing produces two illustrated booklets in large print, one for staff and the other for service users. The booklets introduce KeyRing and the supported living networks and are available from: Carl Poll, KeyRing Living Supported Networks, 128-130 Curtain Road, London, EC2B 0ZZ, Telephone: 020-7739 1011

The Cost of Opportunity

It is often assumed that separate housing and support for people who have learning difficulties is the more expensive option. Equally, staff may believe that people who have very complex needs require residential and institutional forms of care.

Tony Ryan's new report challenges both of these assumptions. The report draws on a number of examples of housing and support arrangements as well as contacts with purchasers, providers and users of services.

It shows that people who have learning difficulties, including those who have really challenged services, can be supported in their own homes, resulting in more cost-effective and desirable housing support for all.

The report costs £12.95 plus £1.50 postage and packing and is available from: Values into Action, Oxford House, Derbyshire Street, London, E2 6HG, Telephone: 020-7729 5436

Editor's note: One major advantage to housing and support being provided by different organisations is that people should not need to move if their needs change. This book clearly shows how support can be increased or reduced when appropriate.

Some residential services are reluctant to continue to accommodate newly blind people - especially if they becoming 'challenging' following sight loss.

'Homes' have insisted that people move elsewhere, despite staff and management being aware that the individual is distressed and disorientated. They may be unwilling to obtain help from local authority specialist workers for visually impaired people. One ploy is to tell families that they are not registered for blind and partially sighted impaired people and so can no longer help the service user!

Housing options

Housing Options is an independent advice and consultancy service for people with learning disabilities, their relatives, housing and care providers and purchasers.

Housing Options exists to promote independent supported living including home ownership for people with learning disabilities.

Their part-time advisor is supported by a network of legal, welfare benefits, financial and other experts.

For further information, contact: Nigel King, Housing Options, 78a High Street, Oxon OX8 6HL, Telephone 01993-705 012

Your good health - a series of booklets for people with learning disabilities

The British Institute of Learning Disabilities have produced a series of ten illustrated and accessible booklets for people with learning disabilities.

This set of booklets offers information and advice on how to stay healthy and what to do if you are ill. The booklets have been prepared by health professionals, working closely with groups of services users. The topics covered reflect Department of Health guidance and priorities for health improvement.

Booklets in this series:

Exercise
Breath easy
Eating and drinking
Alcohol and smoking
Looking after your teeth
Seeing and hearing
Sex
If you are ill ...
Using medicine safely
Coping with stress

The booklets are easy to understand, with clear illustrations. They can be purchased as a set of 10 for £30.00 plus 5 per cent postage and packing. Alternatively they can be bought individually, with each booklet costing £5 plus postage and packing with exception of the booklet on Sex, which costs £8 plus postage and packing.

Available from BILD Publications, Plymbridge Distributors Limited, Plymbridge House, Estover Road, Plymouth, PL6 7PZ, Telephone: 01752-202300

Management committee members and volunteers needed for Change

Change is a national organisation representing people with a learning disability and a sensory impairment. It was founded to help people with visual or hearing impairments, or who are deafblind, to get the services that meet their needs.

Change is currently trying to recruit new management committee members. The committee meets in London once every eight weeks and is ideally looking for people who can attend these meetings as well as give further time to the organisation.

They are also hoping to make contact with adults with learning difficulties who would like to volunteer to help them in their work.

Further details from: Philipa Bragman or Karen Edmunds, Change, First Floor, 69-85 Old Street, London EC1V 9HY, Telephone: 020-7490 2668

Deafblindness - understanding and caring

Booklet from Council for the advancement of communication with deaf people (CACDP) - reviewed by Brian Peaker, RNIB's Social Services Consultant

The arrival of the CACDP practice guide is warmly welcomed.

It is aimed at staff working in residential homes and day care centres for older people. It would also be of immense benefit for Community Care (Home care) Assistants. Inevitably these staff will come across many residents or 'customers' who have a sensory or dual sensory disability. This booklet will help them to recognise, be aware of, and respond to dual sensory disability sympathetically and practically.

Everyone working in the field of deafblindness will recognise its value. It does not use jargon and I am pleased that there are good clear illustrations which portray positive images of deafblind people.

There is no legal definition of deafblindness. This booklet, however, describes deafblindness very clearly and shows that the term encompasses a range of people including those who are both hard of hearing and partially sighted.

The booklet describes the problems and needs of deafblind people very well. Likewise, there is a very useful section on communication. Staff working with older people will mostly encounter 'deafblind' people who have acquired a sight and hearing loss. More emphasis therefore on the use of lip-speaking techniques associated with hearing and low vision technology would have enhanced the otherwise very useful information.

It is especially pleasing to see that, as well as describing some communication methods; the booklet points up the need for deafblind people to be offered help with new methods of communication.

It would be hard to improve on the helpful, informative and practical chapters on 'Environment', 'Orientation' and 'Mobility'. The advice and information contained in those chapters can only enhance the opportunities for older deafblind people to have meaningful experiences of residential and day care.

This booklet is strongly commended to those agencies that seek to provide the best possible service for older people. The booklet costs £3 and is available from: CACDP, Head Office, Pelaw House, School of Education, University of Durham, Durham, DH1 1TA, Telephone: 0191-374 3607

New Beacon keeping you up-to-date with visual impairment issues

Keeping up-to-date with the field of blindness and partial sight can be a difficult task, but RNIB's New Beacon magazine can provide the information you need. New Beacon is published monthly, and includes news and views on issues concerning people with serious sight problems. It is essential reading, offering:

in-depth articles and analysis
a lively letters' section providing a forum for debate and discussion
news about key developments in the field
a leisure section
a notice board of events and news from around the UK.

Available in print, braille, tape and disk, the New Beacon is read by blind or partially sighted people, their relatives and friends, as well as by people who have a professional or voluntary interest in this field or simply want to keep up-to-date.

New Beacon is published every month (except August) and costs £1.70 per copy (£18.70 for a year's subscription) or £2.60 per copy for overseas customers (£28.60 for a year's subscription).

To order, contact RNIB Customer Services, PO Box 173, Peterborough PE2 6WS, Telephone: 0845-7023 153

RNIB Website

For the latest news and information, you may like to visit RNIB's Website - www.rnib.org.uk

Alternatively, RNIB Multiple Disability Services have their own section on the RNIB Website, which includes all Focus Factsheets. We are hoping to make this Website interactive so people can leave messages for us.

Do visit us! We can be found at: www.rnib.org.uk/multdis

Content author: sarah.barley@rnib.org.uk

Last updated: 20/10/2008 16:12

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