Publications Archive

Focus, May 1994, 12

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

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

© RNIB’s Information Service on Multiple Disability

Editorial

The 1960's television series, the Prisoner, has become a 'cult'. A suave young man is captured and arrives uncomprehendingly at a bizarre isolated community, where the powers that be - and we never discover who they are - fail to get him to reveal why he resigned from his top secret job. They keep saying to the Prisoner, known simply as 'Number 6': 'We want information'. We know that this man will never break; he is convinced that 'they' will misuse the information they so desperately want.

This edition of ‘Focus’ includes articles from information providers and demonstrates some positive and negative uses of information. Reading Jean Collins' article, one questions whether Peter Marriott's 32 years of institutionalisation might have been prevented if someone had obtained information on other placements and help from specialist workers for visually impaired people. Anna Tylor writes of how some visually disabled people's mannerisms may marginalise them in a sighted world, and about their need for information about alternative strategies, enabling them to chose to adapt their behaviour, or decide to be 'different'.

Chris Hatton and Eric Emerson's report of the national survey of local authority services for people with learning difficulties and sensory impairments is horribly predictable. They found no clear definition of the user-group, so services were planned without information on sensory impaired people. Yet a definition of blindness was enshrined in legislation in 1920, and were not 'mental handicap registers' set up to assist future planning - although information on sight and hearing is not always recorded?

Information gives people the power to label others. Jean Collins, points out that some agencies have identified their sensory impaired residents to make them 'special needs' prisoners. We do not believe in the old adage, frequently quoted to the Prisoner, Number 6, 'a still tongue makes a quiet life'. The debate on people with visual and learning disabilities needs to be conducted with the volume turned up - loud and clear - and in the community.

Of black bags and ordinary lives

Jean Collins - Assistant Director, Values Into Action

The development of community care as a replacement for institutional care has revolutionised the lives of thousands of people with learning difficulties. Between 1968 and 1993 the number of people living in mental handicap hospitals in England dropped from 65,000 to 16,000. That is an impressive achievement, affecting the lives not only of the people who were already living in hospital but also of those in the community who might, in previous times, have been assigned to one.

It is nonetheless sobering to calculate that the closure of 49,000 hospital places in 25 years represents an average annual reduction of less than 2,000. If that rate is maintained it will take at least until 2002 before the last mental handicap hospital finally closes. That means that some people are condemned to another eight years of confinement to a hospital with all the deprivation, lack of choice, privacy and degradation that involves.

To assess the progress being made in resettlement from mental handicap hospitals, Values Into Action (VIA), supported by the Joseph Rowntree Foundation, conducted research in England between 1991 and 1993. There are three reports from the research: When the Eagles Fly, 1992; The Resettlement Game, 1993; and Still to be Settled, which will be launched in April 1994 at a VIA conference on resettlement strategies.

A number of mental handicap hospitals have already closed and those that still remain are, of course, attempting to provide their residents with at least some of the living standards expected of the late 20th century. Hospitals, however, are intrinsically inadequate and unsuitable places in which to lead one's life. Life in mental handicap hospitals remains one of hardship and poverty for the majority of residents.

Personal possessions

Hospitals generally now provide their residents with some personal space, usually bounded by their bed and a wardrobe or cabinet. But this is easily invaded by others and subject to the gaze of passers-by. Moreover, it does not provide security - either for the residents or their few possessions. It is still a feature of mental handicap hospitals that residents habitually take their most valued possessions with them everywhere, even if only going to the toilet, for fear of having them stolen.

This reluctance to leave anything unguarded even for a moment often continues for considerable periods of time after people have left hospital. During the course of the research I met one man, for example, who continued to sleep with his photograph album under his pillow for nearly a year after moving into an ordinary house in the community. I also met a woman, now living in a flat, who still packs up her pens and books and takes them with her as she moves from room to room.

People's inability to acquire personal possessions legally is obviously a significant factor in the lack of respect for others' property so frequently shown in hospital. It is a combination of jealousy and of a lack of understanding about property rights in general: where personal possessions are uncommon, an understanding of the rights of ownership is unlikely to develop. One woman, for example, was well known in hospital for stealing other people's property. In the community, however, ready access to her own money and to the shops has enabled her to satisfy her need for ownership without resorting to theft. She has stolen nothing since moving into a shared house in the community, even though there is now a great deal more to steal.

In many hospitals residents' lack of personal possessions extends even to their clothing. Few people own their own clothes and have to share the common stock held by the ward on which they live. Under such circumstances pride of ownership and pride in appearance are impossible to achieve - people are very unlikely to feel valued or to nurture a sense of personal dignity and worth. Even where the policy is for residents to have their own clothing, as is the case in some hospitals, the quality and quantity of their clothes often leaves much to be desired. Looking after residents' clothes is obviously no easy task in typical hospital conditions.

Black bags

The research found that when people leave hospital to start their new life in the community they are most usually provided, not with a suitcase, but with a black, plastic bin-liner. After having spent perhaps 20, 40 or even 60 years of their life in hospital they carry out the whole of their possessions in a black plastic bag. Very often their new support staff actually find that the bag contains little that is personal, consisting in the main of a bundle of shared clothing put together for the occasion. One community staff member interviewed in the research commented 'The clothes in the bundle often don't even fit'. Another support worker summed up the experiences of many when she explained: 'People had so few belongings when they came. Their clothes were just awful. The first priority was to go shopping'.

Hospital standards are improving but the very nature of institutions differentiates between standards acceptable in ordinary life, and standards acceptable behind hospital walls. It was not until 1991, for example, that one hospital introduced a quality standard specifying that everyone should have his or her own tooth brush! It is all the more cause for concern, then, that the research discovered that some people will be denied the opportunity to enjoy ordinary life experiences not just for another eight years, but permanently.

Segregation

A number of mental handicap hospitals that have become NHS trusts are planning to develop segregated, on-site accommodation for particular categories of people with learning difficulties. These specially designated people include those who have visual or hearing impairments, epilepsy, physical disabilities, mental health problems or challenging behaviour, as well as those who are elderly. People who are unfortunate enough to have been given one of these labels in addition to that of 'learning difficulties' are increasingly likely to find themselves placed in segregated, often isolated, accommodation with others bearing the same labels.

Residual hospitals specialising in people who can be categorised as not 'ordinary' people with learning difficulties, and who are therefore deemed unsuitable for community care, are tending to call themselves 'centres of expertise'. This is in spite of the fact that elsewhere in England a number of local authorities, and NHS Trusts are developing teams of professionals whose specialist knowledge and expertise can be employed where it is needed - in the community.

People of all levels of need and ability have the right to be enabled to experience, to the fullest extent possible, the range of life experiences available to other people. This can only be feasible where people are living within, and as part of, the general community, and are not set apart in distinct and identifiable 'communities' of their own. Continuing segregation not only perpetuates the misguided belief that people with profound, complex or multiple disabilities are in essence 'different' from other people, but also provides a setting within which people may continue to feel and to be perceived as lacking in value and worth.

Disempowered residents and staff

Institutional settings that systematically disempower both residents and staff are not, of course, confined to large, traditional hospitals isolated in the countryside. They may also exist in 'ordinary' houses in the community, if the regime that controls the house is institutional in character. The research found that many people now leaving hospital are moving into supported accommodation staffed by the NHS trust which also runs the hospital from which they are moving. Whilst some trusts aim to shed their institutional attitudes and practices as they develop their community services, others are content to transfer into the community the structures and perceptions which characterise the hospital regime.

Institutional structures do not occur only in hospital or other health service dominated settings: they are equally likely to occur in local authority, private and voluntary sector homes unless specifically guarded against. There has to be an emphasis on flexibility in working practices and responsiveness to the wishes and needs of the residents. Institutionalism is least likely to occur where the aspirations and individuality of each person being supported is at the heart of the organisation's concern. And to achieve this services have to be designed to suit each individual, not provided on a standard model into which people are expected to fit merely because they are forced to carry certain labels. The following story, which was collected during the course of the research, demonstrates how a person's life can change when attention is paid to them as an individual.

Peter Marriott's experience

Peter Marriott (not his real name) went into hospital when he went blind at the age of 29. He lived there for the next 32 years until finally being offered a self-contained flat in an old people's home in 1992. From the moment he first visited the home, he was keen to move in, for three main reasons. Firstly, in hospital he had no private or personal space and therefore no peace and quiet. His greatest pleasure is listening to the radio, especially to football, but this he was unable to do because of the constant noise, interference and interruptions. Secondly, being blind he was unable to protect his food at mealtimes: other people stole the food from his plate. Those who lose food or drink to the more adept in hospital have to go without, since ward staff have no access to additional supplies. Thirdly, the prospect of having his own front door, behind which he would be in total control, was an offer he could not possibly refuse.

It has taken Peter a long time to believe that no one will steal his food. He now knows that it really is not necessary to hunch over his plate in order to protect it or to bolt down the whole meal in 20 seconds - a common defensive practice in hospital. He has also had to learn that it is no longer necessary for him to shout, swear and use vulgar language in order to attract staff attention. His confidence in his own ability and in staff readiness to help him has grown enormously. Whereas originally he would only move around whilst fiercely clutching someone's arm, he will now walk on his own responding to verbal directions.

The manager of the home says that Peter is now a changed person. He is much less agitated than when he first came and no longer takes any medication, although he was taking 100 milligrams of Melleril (an anti-psychotic drug) per day when in hospital. He is the only person with learning difficulties in the home and has been well accepted by staff and other residents. The staff in particular said that they enjoyed having Peter, partly because he is the only one of their residents who actually wanted to come - everyone else had to leave their homes - and partly because they have been able to help him expand his living skills and learn to enjoy life. The manager commented:

'His blindness is his biggest problem. He's wasted 32 years. With training he could have been a "sighted blind man". Only now is he beginning to learn how to live with blindness'.

Visually disabled people in hospital

There are many other people with visual and learning disabilities still waiting to leave mental handicap hospitals, whose needs are not being met. There is no room for complacency just because community care is now official policy. Vigilance is needed to ensure not just that all the hospitals do eventually close, but that the new provision being made in the community is individually designed to provide the ordinary life-opportunities that people want and need. Institutions, whether large or small, cannot satisfy people's right and need to be valued and respected members of the community.

Details of the work of Values into Action, publications and conference details are available from:

Values Into Action

Oxford House

Derbyshire Street

London E2 6HG

Telephone 071-729 5436

Visually disabled people and non-verbal communication

Anna Tylor, who has a visual impairment, runs a variety of programmes on presentation skills and personal effectiveness.

Why bother?

Good citizenship, we are told, comes from the home as well as school. Children learn by example. By and large their attitudes, as well as the way in which they express those views, are nurtured by the adults around them and practised on just about everyone they come into contact with on the rocky road to independent living.

So what of the children who find some of the lessons of growing-up blocked because of lack of visual ability? An obvious example comes in the form of so called 'blindisms' - not a scientific term, but one most readers will understand. This is the inappropriate, sometimes disturbing body language that some visually disabled people develop and which can indeed cause individuals to find themselves set apart. 'Blindisms' may prevent people from making the kind of active contributions to society, that as good citizens, they would like to make.

There are some fairly typical types of body language that many visually disabled people demonstrate: rocking, head rolling, clenched fists, tensed and raised arms and shoulders, tongue poking, eye rubbing and poking and hand wringing.

Jackie rocks back and forth and often rubs or pokes her eyes vigorously when she is around others, who feel unable to cope with such unusual behaviour.

Body language - non-verbal communication - is a subject near to the hearts of very many blind and partially sighted people as well as the professionals who work alongside them. People have long known that the inability to make eye contact can render taking turns in conversation difficult. However, people are becoming increasingly aware of the importance of body language, and that if they have mannerisms which sighted people find 'disturbing', they may find themselves socially marginalized. They may find it harder to get a job or form relationships in many places.

The causes of so called 'blindisms' are varied. People may have needed to entertain themselves in boring long-stay hospitals. Some are just 'annoying habits' - most of us fiddle with things, or have some behaviour which irritates others. Many blind people, however, complain that no one ever bothered to tell them that sighted people often find certain behaviours off-putting. People may never discover the wonderful range of rude gestures others can make with their hands!

Somewhere in between these two extremes come a number of other causes including self-gratification or obsession caused through lack of visual interaction and stimulation, and we should not forget stress. Sensory deprivation can be a phenomenally isolating and extremely frustrating situation to find oneself in. When coupled with other disabilities, it is no wonder that people have problems around self-expression and often find their contributions marginalized. The stress that visual disability induces can help create a vicious circle in which the individual finds self-expression difficult and is further frustrated by the responses he or she gets.

Coupled with unspoken communication, comes verbal communication. Just as in the fully sighted world, the two are not unrelated, but joined at the hip so to speak. People with no useful sight can't read the visual signals of others and may interrupt, pick an inappropriate moment to interject and build themselves a reputation for unreasonable and aggressive behaviour.

In meetings, Simon can't read body language and finds it hard to know when to speak, often leaving it until he can't bear to keep silent any longer. His contributions often come in the form of strident interruptions and while his contributions may be worthwhile he often finds himself being rebuffed because his style of delivery is interpreted as aggressive.

How to bother

Just as for all successful campaigns, a strategy is needed to encourage people to develop practical skills in order to successfully 'resolve' some of the difficulties that their visual disability presents. The most successful communicators, (whoever they are) have thought through their own needs as well as how those needs relate to other people, how best to present ideas and the best communicative tactics to ensure the message is received loud and clear, without misunderstanding. Where individuals develop understanding of how the sighted world communicates both verbally and non-verbally, effective skills - tactics - can more readily be taken on board and used.

So how does the teacher or carer begin to nurture good practice? By building on the universal interest in the self, it may be possible to channel the same energy that hitherto has been inappropriately directed, into an ultimately more rewarding form of self-expression. For the purposes of this article, we will concentrate on the needs of adults, as opposed to children.

Setting goals

For professionals, winning the support of those visually impaired people with whom they work, must be the first step of a planned approach to managing stress and developing good communication skills. Most of the work and the reward will come outside of the classroom or caring environment and is a widely recognised life skill.

In order to ensure that 'students', carers and teachers are not working at odds with each another it is important to set some goals, long medium and short-term goals, all negotiated and all realistically attainable. But where does one start?

Let's consider helping someone helping someone get a job and live independently. In order to achieve this, the person needs to develop life and work skills. There are many ways to do this, but for many blind and partially sighted people, developing communication skills, can be a useful way to enhance their chances of achieving long-term ambitions - so this becomes the medium-term goal.

People may need the help of a 'teacher' to define key areas and within each of these key areas, key components. For example, a person might decide that the two key areas to be considered were 'giving' and 'receiving' as a communicator. In order to be a 'receptive' communicator, an individual needs to develop active listening skills. The student needs to demonstrate that her attention has been 'caught' and that she is interested in the other person and what is being said. Then she needs to be able to respond appropriately - either verbally or non-verbally - timing her responses so that she does not butt in and appear rude, or cause awkward pauses, by waiting too long before she speaks. Developing active listening skills is a realistic attainable goal.

But there may be blocks to remove before people can reach their goals. Thinking of occasions upon which we communicate less effectively than usual, it is often when we feel, under pressure, tired, uninterested in what is going on or under threat. Simply, this boils down to stress. Let us now consider the physical expression of stress and how it might be resolved or managed.

Lindy Smith

Lindy Smith has no peripheral vision. She has very little useful central vision but can move about independently and confidently. As she is growing older, she often experiences feelings of vulnerability. This means that she increasingly finds herself in social settings that make her feel stressed, particularly in groups, where it is brought home to her that her hearing, already impaired, is not as useful to her as it once was. Initially she had responded with panic, tearful eyes, clenched fists, withdrawal and an ungainly exit, followed by a swift promise to herself never to put herself in that situation again. Inevitably she broke her word, but this time she was prepared, tensing and scowling before she entered the room. She had rendered herself unapproachable.

A friend, sensitive to her needs and her anxiety levels, suggested some techniques for managing stress that would enable her to continue a much-valued social life. They decided to concentrate on basic relaxation and movement, as in the Alexander Technique, and Lindy was to concentrate on using the parts of her body she wanted to use, and try to keep the other parts relaxed.

They talked through Lindy's social objectives - to feel integrated and comfortable in group settings - and decided to concentrate on the easiest ones first, feeling that if success could be obtained here then it would give a real boost. Together they worked through the problem areas and decided on a strategy for each areas of difficulty. They chose single simple issues, one at a time, and planned to tackle each issue systematically over a long period of time. They set these as their medium-term goals and importantly agreed that mishaps along the way were allowed.

In order to help their plans they tried to develop some very particular skills to manage stress and bring others on to Lindy's side, without setting herself up as an object of pity. Lindy and her friends would gather as much information in advance, so that Lindy was well prepared for group settings.

She also learned to initiate conversations, by asking open-ended questions - diverting attention from herself. She also needed 'active listening skills', to convince others that she was interested in what they had to say and eager to converse. By trying to listen carefully, she gave others the impression that she was concentrating on them and not thinking about something totally different altogether. Her rolling and rocking became less frequent and it also helped reduce the stress levels as it gave her much more to focus on. She also developed skills to manage her stress, breathing and breath control to help her concentrate and to keep the physical signs of her stress in check. This helped her to relax her hands, arms and shoulders, speak without losing her breath or concentration on what she was saying and took her energies away from the faces she used to pull. She needed to learn relaxation techniques, to become familiar with the different physical sensations of stress and relaxation. This also helped her to develop much more awareness of her own body and how it could be made to work in sync.

Although Lindy's is a very straightforward illustration of a planned approach to improved communication, it does illustrate the point that by helping people to understand the issues involved and working with them to find solutions, can yield big rewards. Who was the golfer that said that 'The more I practice the luckier, I seem to get?'

Steven Long

Steven Long is in his late thirties, has no useful vision, lives at home with his visually impaired parents. Most people perceived him as being extremely aggressive because of his constant rocking, facial contusions and talking in a loud inappropriate way. He is notorious for shouting the other person down and lashing out at furniture. He has never had a job and he goes to a local day centre from which he was banned once because of his uncontrolled and often unpleasant behaviour towards others. It was only when this happened did he realise how unpleasant he must seem to other people. He began to think about his communication skills and how he might develop them to more effectively achieve his aims.

His aggressive outbursts became less frequent as he began to understand the consequences of his actions and why he rocked, shouted and lashed out. Stress management techniques were suggested - particularly Yoga and breathing exercises. While they did not solve the problem entirely, matters improved considerably for both Steven and other centre users. Steps were also suggested so that Steven could let others know that he wanted to speak - he showed people that he always pulled his lower lip over his top teeth, and waited until there was a pause in the conversation to speak. He learned he could allow himself time - he could speak slowly, and think about what he wanted to say before continuing. Before, his words came out in an angry, directionless torrent, and he could not convey his feelings clearly. His contributions became more constructive and less apparently vitriolic.

Bottom line

Adults coming into the wider community for the first time, or those whose behaviour was accepted as being 'abnormal' and who found themselves set apart, now find themselves being encouraged towards managing mannerisms and body language as part of a larger strategy of fuller integration and contribution. Some are reluctant students and one can understand that old patterns are hard to break. We may decide that we should be accepted the way we are, but making others accept us is quite another matter! Whatever the rights and wrongs of these issues, they are almost certainly here to stay.

Developing an active approach to communication skills and self-management of some behaviour and gesture in blind and partially sighted people is not a social nicety to make the sighted community more comfortable but has real benefits socially. Using such skills enables people to have greater control and choice in terms of personal presentation, effective communication and just like anyone else, the realisation of personal goals. In the community at large, these are the skills that will help individuals develop their citizenship and help afford them equal access of opportunity.

If you would like further information about Anna Tylor's work please contact her on 081 769 8673.

Editor's note: RNIB's Information & Practice Development Service on Multiple Disability has produced a leaflet on 'Stereotypical behaviour in people with visual and learning disabilities'.

Services for People with Learning Disabilities and Sensory Impairments: Results of a National Survey of Local Authorities

While increasing attention is being paid to the situation of people with learning disabilities and sensory impairments, there is intense debate over how to define, identify, and provide appropriate services for this group of service users. Chris Hatton and Eric Emerson of the Hester Adrian Research Centre carried out a national survey of local authorities to find out how people with learning disabilities were identified, what current services were being provided, and what future services were planned.

The findings show that the majority of local authorities:

  • lack a clear definition of this service user-group
  • underestimate the numbers of people in this service user-group
  • lack effective information-gathering systems for gaining reliable prevalence estimates
  • report few specific policies or designated officers aimed at this service user group
  • report little investment in specialised services, with the voluntary sector providing a significant proportion of the specialises services reported
  • report a move towards greater specialisation in future service provision.

These findings reflect a general lack of clarity within local authorities about the most appropriate ways of defining, assessing need and planning, purchasing and providing services for people with learning disabilities and sensory impairments.

If you would like to receive a copy of the findings, please send a cheque for £1.50, made payable to the University of Manchester to:

Chris Hatton

Hester Adrian Research Centre

University of Manchester

Manchester M13 9PL

Telephone 061-275 3342

Fax 061-275 3333

From Advocacy to Zelleweger Syndrome: The Information Resource Centre of British BILD - how can we help you?

Linda Averil, Information and Resources Officer, British Institute of Learning Disabilities

'Do you have any details of floating harbour syndrome?'
'Do you know of anyone who has software which will help the adults I work with?'
'Can you let me have details of any resources concerning the expression of feelings?'
'Have you heard of someone called Rusch? Can you tell me what he/she has written?
'I've heard about a book but I don't have any details. I just know it has something to do with eagles! Can you help?'

These are just some of the questions we get asked during a normal working day at the British Institute of Learning Disabilities. As far as we are concerned in the Information and Resource Centre, each of these questions has the same answer - yes. We dislike saying no, and although there may be occasions when we cannot provide the information ourselves, we can always suggest a contact or another organisation that will be able to help.

We try to keep our resource centre up-to-date and visitors find it well stocked with material on all aspects of learning disability. With over 4,000 resources to choose from on the shelves, we can usually satisfy most requests from our members. As well as holding an up-to-date stock of books and reports, we also have a good selection of training packages, subscribe to over 70 journals, a video library and an extensive stock of leaflets and catalogues.

The basis of our information service is our extensive computer database. Within this we hold details of everything that has been written on the subject of people with learning disabilities since 1984 - and that amounts to over 21,000 individual references.

There are a number of opportunities available to our customers to access this resource. We make new information available each month through our bibliography - Current Awareness Service. This is available on subscription and is a monthly listing of new books, journal articles, audio visual materials and courses. As a back up to this service, we offer photocopies of selected journal articles listed and, of course access to the books and other resources through our library. Other customers may prefer information on a particular subject - for example, advocacy and we could satisfy this request through one of our 'ready-made' reading lists. We have 41 covering the most popular subjects requested. If our enquirer wants information on something that is not covered by our reading lists, for example Zelleweger Syndrome, we can offer a 'search' of the database where we will be able to compile a custom-made list of references.

So if you are working with people with learning disabilities, and need some information or assistance, we will always try to help you. You can contact us on 0562-850251, or alternatively, write to us at:

The British Institute of Learning Disabilities

Wolverhampton Road

Kidderminster

Worcestershire DY10 3PP

MENCAP PIMD Section - The next phase

Helen Mount, Co-ordinator, Mencap PIMD Section

The Mencap Profound Retardation and Multiple Handicap Project was established in 1985. Re-named the Profound Intellectual and Multiple Disability section (PIMD), it provides a range of services, which may be of interest to Focus readers.

We have done a national survey, published in 1988, on children and adults with profound disability, which highlighted seven topic areas. Now that the pilot and second phase workshops on these subjects have been successfully run in Manchester, the PIMD section is entering a new phase.

Workshops developed from the areas highlighted by parents/carers of people with profound intellectual and multiple disabilities in the survey were:

  • Communication and feeding
  • Dental care and healthy eating
  • Physical management
  • Management of challenging behaviours
  • Planning for leisure
  • Rights and entitlements: benefits and allowances
  • Planning for the future: wills, trusts and residential provision

Each workshop was put on twice and evaluated each time. It is from those evaluations that a workshop model has been developed in order that the information may be disseminated and workshops can be organised and run elsewhere in the U.K.

The workshop information and associated materials are currently being written up as training packages for anyone interested in running one or a series of workshops from the above topics specifically related to children and adults with profound and multiple disabilities. The packages will have the same format consisting of a ring binder containing three distinct sections. The first of these is an administrator's section, which deals with the practical aspects of organising such a workshop. The second section contains all the information the tutor will need to enable him/her to put on the workshop in the relevant topic area. The final section contains instructions for compiling essential information/hand-outs/work-sheets etc for the course participants.

The workshops were originally devised to assist parents and carers but interested professionals also attended most of them. These packages will therefore be of value to any organisations making provision for people with profound and multiple disabilities, especially special schools, day centres, hospitals or residential homes. The PIMD Section will also offer further advice and support in putting on workshops if required.

The first package on the ‘Development of Early Communication and Feeding Skills’ is in final draft form and is expected to be available any day now. The tutor's manual for this package has been written by Juliet Goldbart of Manchester Metropolitan University and Jennifer Warner of the University of Manchester.

Subsequent packages will follow at approximately three-monthly intervals and anyone interested in going on a mailing list for one or several of the packages should write to:

MENCAP PIMD Section

Piper Hill School

200 Yew Tree Lane

Northenden

Manchester M23 OFF

Planet - Play Leisure Advice Network

Judy Denziloe, Manager of Planet

Planet has now been in operation for almost three years, and life is fairly hectic! My diary for the last few days gives some idea of the range of our work:

  • display of play materials for parents and playgroup workers in Swindon;
  • visit by a young girl who has cerebral palsy who wanted to look at books and videos which will help her to understand her disability and which she can use with teachers in her (mainstream) school, who are having problems appreciating her abilities and how she can be involved in course work;
  • lecture to hospital play specialist students;
  • visit by two autistic young people and their keyworkers to try out equipment in the display room;
  • training day in Hereford on leisure for adults with learning disabilities, for staff in residential homes.

So what is Planet?

It is a national information resource on play, leisure and recreation for children, young people and adults with disabilities. We give information and impartial advice on equipment, activities and organisations. We also campaign to raise awareness of the importance of play, leisure and recreation in all our lives and the right of disabled people to enjoy the same range of services and opportunities as everyone else.

The number of enquiries in 1993 were double the number for 1992 and the types of enquiries were fairly evenly split into three groups:

  • 30% requests for general information about Planet and its services
  • 35% enquiries about visits to Planet (individual appointments, Open Days, Video Days), requests for Planet to do talks and displays around the country
  • 31% information wanted on specific subjects.

If you have a son or daughter who has a learning disability and a visual impairment, or you work with people who have, how might you use Planet? You might want specific information on a product, book or video, or general information on equipment and activities. You might like to visit Planet's resource centre, or to invite us to put on a display or video day in your area.

Whatever you want to know about play, leisure and recreation for people with disabilities, please do contact Planet and we will try to help.

Judy Denziloe

Project Manager

Planet

c/o Harperbury,

Harper Lane, Radlett

Herts WD7 9HQ

Telephone 0923 854861

Fun and games: practical leisure ideas for people with profound disabilities

A book by Judy Denziloe of PLANET - reviewed by Gill Levy, RNIB

Finding ways to help other people enjoy life can be very hard work! Many of us feel quite overwhelmed when trying to organise leisure activities for people with profound disabilities, who may lack experience of life, and spend much of their day being encouraged to do things which are 'good for them'. Yet all of us need to have fun, but planning entertaining activities for other people can feel a bit like arranging a marriage. Where does one start? What would that person enjoy?

Judy Denziloe has produced a book which aims to meet this need - and I think succeeds. It has an introduction that is both formal and informal: what play and leisure are, whether adults play, and issues such as age appropriateness. It also considers how to do things yourself, or persuade other people to create equipment for you. Most of the activities listed are low-budget, some costing nothing at all, while others use equipment. However, the book does not assume that people have either time or money to spare, and unlike many other books on leisure for people with learning difficulties, it assumes that staff may need 'visual prompts' to understand concepts. It is nicely illustrated by Gillian Hunter - my only regret is that there are not more illustrations for people like me who find it very hard to follow instructions.

One of the nice things about the book, is that the person who wrote it is so very accessible - people may contact PLANET, visit their resource room, or have Judy Denziloe to provide training/advice sessions.

'Fun and Games' can be ordered from:

Reed Book Service Limited

P O Box 5

Rushden NN10 9YX

£14.95 including postage

ISBN Number is 0 7506 0571 5.

Disability, learning difficulties and further education: call for evidence

The Further Education Funding Council (FEFC) has set up a committee to look at further education for students with disabilities or learning difficulties in England. The committee especially wants to know what students think and want. Later in 1994 it will organise meetings for students and other people with disabilities or learning difficulties to help it find out.

For now, the committee would like to hear from students, other people, organisations and groups who know about disabilities, learning difficulties and further education. So it is asking for evidence about:

a) what 'disability' and/or 'learning difficulties' means

b) assessing individual needs

c) how and if colleges cater for students' needs and the needs of communities

d) the way colleges plan and manage provision for students with learning difficulties and/or disabilities

e) how funding arrangements affect provision and individuals;

f) specialist support services for students

g) the role of local education authorities, social services and health authorities and how they work together

h) the quality of provision and the quality of individual students experience.

The committee will work for up to three years to review further education in England for students with disabilities and/or learning disabilities. It will give advice about what the council can do to make sure students with learning difficulties and/or disabilities can take full part in further education.

The committee would like to hear from the widest possible range of people, groups and organisations. This is an important opportunity for people to make their needs and wishes known and evidence can be submitted in writing, on disc, on audio cassette, on videotape, in braille, in pictures, photographs or using symbols from a recognised communications system - for example, Makaton or BLISS. It is important that people tell the committee how it could help them in their work, or what might be done to improve people's quality of life.

The committee may be overwhelmed with information, so people need to make their evidence succinct and practical, possibly outlining the problems they face, and offer solutions. Material sent well before the deadline, 1 August 1994, may receive more detailed consideration than late submissions.

If you would like to know more about the committee, or receive copies of the information pack, please contact Lisa Young at the Further Education Funding Council. Telephone 0203-863084.

RNIB News

'RNIB at Work'

RNIB has published a guide to its services, ‘RNIB at Work: A Directory of services for visually impaired people and professionals’. The guide, which lists RNIB services is available free of charge from RNIB Customer Services, P.O Box 173, Peterborough PE2 6WS. Telephone 0345 023153 (for the price of a local call). The guide is also available in braille or on tape.

Leisure grants

RNIB Leisure Service would like to remind ‘Focus’ readers that grants are available from them. The Outdoor Activity Holiday Grant Scheme caters for groups (not individuals) of visually impaired people with learning difficulties who are going on outdoor activity or adventure holidays.

The Home Based Leisure and Arts/Crafts Project small grants scheme is aimed at supporting initiatives to improve leisure and art/craft opportunities for people with visual and learning disabilities within their own home and/or local area.

Application forms for both these schemes are available from Alan Whetherly at RNIB Leisure Service in London.

Small grants for music projects

RNIB's Music & Leisure Service are able to offer small grants for music based projects aimed at organisations or individuals working with people with visual and learning disabilities. Music in this context covers musical activities in the broader sense - including movement or dance.

By necessity grants are usually small, usually between ,50.00 and ,70.00 and are intended as a method of part funding a development in conjunction with another organisation or organisations. They are usually, although not exclusively, one off payments.

For further details, please contact Simon Labbett, RNIB Music Officer at RNIB in London.

Reminder: Simon Labbett has produced an information pack: ‘Music for leisure for people with severe disabilities’. Single copies are free, additional packs are ,1.00 each.

RNIB Certificate in Multiple Disability

The cost of this course, £2,500 (or £250 per person trained) includes one week's residential training for the trainer, 15 module course books, trainers handbook, 3 videos, resource pack (worth £300), and 10 student file systems. This enables a nominated trainer to train 10 students within their own agency, or possibly sell places to other interested organisations.

Individuals who would like to undertake the course as a student, but whose employers have not purchased the Certificate, need to write to Mark Gray or Janice Evans (address below), stating the areas you are prepared to travel for training. RNIB will then keep this letter on file and will try to put you in touch with trainers in your area as and when they complete the training course.

For a full prospectus and application form please contact:

Mark Gray

c/o RNIB Vocational College

Radmoor Road

Loughborough

Leicestershire

LE11 3BS

Lynda Burgerman

RNIB Practice Support Team

58-72 John Bright Street

Birmingham

B1 1BN

Other News

Women in Learning Disabilities (WILD)

Women in Learning Disabilities (WILD) is a newly formed network of women service users, service providers, teachers and researchers. Its aim is to ensure that women's voices are heard, and women's issues addressed, in policy regarding people with learning disabilities, on conference platforms, in research, journal articles, books and in services for people with learning disabilities generally.

If you have any thoughts about the role of WILD, or ideas about issues that you feel should be addressed, please contact:

Ruth Townsley

WILD, c/o, Norah Fry Research Centre

32 Tyndalls Park Road

Bristol BS8 1PY

Telephone 0272 238137

Mobile Advice Vehicle and Information Service (MAVIS)

One of the Birmingham Royal Institution for the Blind's new services is a Mobile Advice Vehicle and Information Service, more commonly known as MAVIS. This outreach service travels around the City of Birmingham raising awareness of the range of services that BRIB provides for people with a sight disability. It also signposts information and services provided by other organisations. Although mainly a Birmingham resource, MAVIS can visit other locations, by agreement.

Visitors to MAVIS are given the opportunity to have 'hands on' experience of some of the daily living equipment that is available. As well as telling people about the services offered by the BRIB, MAVIS can also provide information in braille, large print, print and on tape. The vehicle carries a wide range of information in these formats. There is a private area available for people who require confidential information or advice. Ramps make the vehicle accessible to everyone.

If you feel that your organisation would benefit from a visit from MAVIS, or would like more information about the service, please contact:

Helen Connor

Advice and Information Officer

BRIB Resource Centre

48 Woodville Road

Harbourne

Birmingham B17 9AT

Telephone 021 428 5055.

Change of address

The Pro-Motion Project, set up to increase access to sport and leisure opportunities for multiply disabled people, has moved. Mark Leach, Development Officer can now be contacted at:

Pro-Motion

c/o UKSAPMH

Solecast House

13 - 27 Brunswick Place

London N1 6DX

Telephone 071 250 1100

Further information

Please note - we cannot guarantee that all the information in this issue is correct now, as it was written some time ago.

For further information, please contact:

RNIB Multiple Disability Services

105 Judd Street

London

WC1H 9NE

Telephone: 020 7388 1266

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

Last updated: 20/11/2008 11:13

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