Search for

Social Bookmarks

Booklet Encouraging and developing communication in adults with multiple disabilities

Introduction

If you are the parent or carer of someone with learning disabilities and a visual impairment you will be aware of the importance of touch as an intimate and powerful means of communication. Love, urgency, fun, anticipation can all be transmitted through touch. However, touch can also be confusing and unsettling if it is not used with sensitivity.

The person you care for will be attempting to make sense of a world in the context of imperfect or absent visual clues and learning disabilities. They will be dependent on consistent support from all their supporters to understand and develop communication strategies that work for them. Without this the world can appear confusing and random. The person may withdraw, become anxious or show distress through their behaviour - which may be challenging.

This factsheet aims to explore how successful communication strategies can be developed and used. It is based on experiences of parents, people with visual impairment and learning disabilities and their family carers and staff. It is also informed by research about how people with learning disabilities and visual impairments learn to communicate effectively.

Author

Helen Bradley, Consultant Clinical Psychologist (Learning Disabilities)

Worcestershire Mental Health Partnership Trust / Course Co-ordinator

Postgraduate Diploma / Masters in Learning Difficulties / Disabilities Severe, Profound and Complex.

School of Education

University of Birmingham

h.bradley.2@bham.ac.uk

with help from Gill Levy (Look Up) and Frances Harding (RNIB).

What is communication?

It is important to have a wide and flexible approach to defining communication. Communication is much wider than spoken language or signing. A person with multiple disabilities may face a number of challenges to developing their communication skills. For example:

She may be in an environment or have a life-style that does not often require or encourage communication.
Her visual impairment may range from total blindness to some useful vision. Visual means of communication, such as the sign system Makaton, may not be possible or may need careful planning to be effective.
She may have additional hearing difficulties.
She may not have reached a developmental stage where speech is processed and understood.
She may have physical disabilities that affect speech production and general movement or signing.
She may have difficulties in accepting and/or learning through touch.

A useful definition of communication is:

“Communication is the exchange of information by any means possible.”

Looking at communication in this way encourages the creative use of many methods - for example, speech, sign languages and systems, adaptations of formal signing (for example, to make visual signs tactile - such as making a sign on a person’s hand instead of ‘in the air’), touch, natural gesture, body clues, familiar routines, everyday object clues, symbols, tactile pictures, etc. This list is by no means exhaustive.

Why do people learn to communicate?

Communication is a highly effective way of getting what you want - for example, asking for attention, rejecting unfavoured activities, making choices, and so on.

Parents encourage their babies to communicate by being very responsive to their child’s early attempts to communicate. Even burps, giggles and body movements are treated as if they are attempts to communicate. People with multiple disabilities need the same enthusiastic responses to their attempts to communicate. For example, a young woman with multiple disabilities who attempts to attract attention with a particular body movement may abandon this method if it is ignored or misunderstood by staff or carers.

To want to communicate, people need to have a positive relationship with a familiar person. It must be an understanding, warm and supportive relationship. Babies are usually only expected to develop a relationship with a very limited number of adults but adults with learning disabilities, at an early stage of skills development, may be asked to cope with a variety of different people. They may need to establish a close relationship with a special person or key-worker who learns to understand their “inner voice” before any attempt is made to teach more formal methods of communication. Parents and other family members are an invaluable source of information about this inner voice and staff should build on this knowledge.

Stages in the development of communication

In order to understand the best methods of communicating it is helpful to look at the skills of a person with disabilities in the context of a developmental sequence.

Communication skills and needs

1) The person responds to her internal feelings - such as hunger, comfort, etc. She does not try to communicate or change the situation.

To have a close relationship with key carers.
To have clear routines.
To have a quick response to distress or happiness.

2) The person tries to alter a situation - e.g. to push an empty cup, to push someone away. They still do not intend to communicate.

To have one-to-one sessions doing enjoyable things that can be controlled. For example, the carer might rock the person in their arms, then stops and sees if the person does anything to restart the game.
To have behaviour treated as if it is intended to communicate - for example, when a cup is pushed away, carers interpret this as “I’ve finished”.
To have opportunities to act on the environment in everyday activities - for example, the cup is not automatically removed when empty, the person is encouraged to push it away when she has finished.
To have clear clues about what is about to happen next.

3) The person makes the discovery that she can alter other people’s behaviour - e.g., pulling a friend or carer over for a cuddle, waving a cup when thirsty, making a certain sound, e.g., “Eeee” when wanting attention.

To have lots of opportunities to try to influence carers, make choices, etc. The start/stop activities should continue and be developed.
For carers to respond quickly and consistently - e.g., the cup is filled when the person waves it around.
For the carers to accept the informal attempt at communication and help the person to develop a more advanced way to communicate - e.g., to fill the cup and help the person make a sign for “drink”.
To have clear communication about what is going to happen next.

4) The person uses formal communication - e.g., speech, signs, words, symbols, etc.

For all carers to understand and respond to the system and to use it themselves.
For systematic encouragement to extend the formal communication.

Communication and individual needs

People are unique. They will want and need to communicate about different things. However, there are certain basic human communication requirements - regardless of ability or disability.

Social relationships

Saying hello

“Hello” routines are vital - they tell people who is around.

Imagine a world in which people appear from nowhere and come and take you to places without ever telling you who they are. Some people accept this situation, being unable to control their environment or the people around them in any way. Others may become frightened and angry and demonstrate their anxiety through behaviour that supporters find ‘challenging’.

“Hello” routines may include special touches, special verbal greetings or special objects that are carried.

Andrea is blind. She cannot identify people’s voices, nor people saying who they are. Her key-worker would touch Andrea’s hand in a special way. In time Andrea showed that she recognised her.

John does not recognise his own name. He has been greeted by his older brother in the same way since he was a baby. Ben speaks into John’s ‘good’ ear and says “hello, John-boy” several times, slowly and clearly. John grins and pulls Ben forward, touching his hair.

Douglas who is profoundly deaf and blind has learned to recognise his key-worker by touching the special key ring that she always wears on her belt. He now smiles when she comes on duty.

The person needs to be greeted by their supporters in a consistent way. It is essential to give the person time to process the information about who is with them.

Adults with visual and learning problems may need some help in developing an effective age-appropriate method of greeting people.

Despite having adequate visual recognition skills ever since he was a young child, Joseph had stroked people’s bodies and hair whenever he greeted them! In his 20’s this caused some embarrassment. He was helped to take people’s hands instead, which was a more appropriate “hello”.

Saying goodbye

Saying goodbye is as important as saying hello. Many adults with learning disabilities have experience of people who are important to them vanishing from their lives, without warning or explanation. Just taking the person’s hand and helping them wave goodbye or signing “finished” may help them understand if you will not be back for a while. It also gives the person a polite method of asking you to leave.

Having an identify

People who are blind or partially sighted with learning disabilities may need some help to develop a concept of their own name and to recognise their own possessions. Some sort of tactile labelling can be very helpful.

Kathryn enjoyed exploring solid shapes, preferably with holes or dents in them. Her carers made a series of tactile badges, which they attached to her key possessions. The one on her bedroom door helped Kathryn to find her way to her correct room.

Having privacy

A loud knock may not alert people that someone wants to come into their bedroom. Family members and staff who feel uncomfortable walking in without giving advanced warning might consider flicking the light switch if the person has enough sight to see it. Alternatively they may need to flick a fan attachment on and off so the person feels the air movement.

Fan attachments to doorbells usually made specially for individuals.

REMAP ( http://www.remap.org.uk/) can make an adjustment to an ordinary doorbell and a domestic fan. They may provide this service free.

People can buy a standard alerting device from Sarabec (www.sarabec.co.uk, telephone 01642 247789), who will them modify it. The additional cost will be approximately £120.

Recognising friends, family carers and staff

People may require a well-thought-out method by which they can identify their family members, friends and carers. It can also be useful to consider a method that can be adapted to communicate advance warning about who will be coming to visit.

Trisha, who was deaf and blind, easily learned to recognise Helen because Helen always greeted her with a special “hello” gesture. Helen also encouraged Trisha to feel her special shape name she kept in her pocket. Later other carers would give the same shape to Trisha to hold while she waited for Helen to come and spend time with her.

Family members who regularly visit their relative in a supported living or care home situation may also appreciate being involved in this sort of system.

Activities and events

A world where things happen unexpectedly is frightening to anyone, but perhaps especially so to someone with limited sensory awareness or who cannot move away from frightening events.

A good clear routine which makes use of tactile clues, speech, gesture, natural objects and so on, is most important.

Mary has no vision, some limited hearing and very limited movement in her legs. She can hold objects briefly with a little hand-over-hand support from her carer. Her carers have worked out the following routines:

Hand massage: Mary loves a hand massage with lavender oil. To offer this to Mary, the carer gently strokes Mary’s hands and lets her smell a drop of oil on a tissue. If Mary smiles and waves her hands, the carer proceeds with the massage. If Mary scowls or tenses her hands the massage is left, and offered again later.

Washing hands: Before taking Mary to the sink her carer helps her feel and smell the soap. She makes a hand washing gesture hand-over-hand with Mary.

Drink: Before taking Mary for a drink, her carer touches her lips briefly and helps her feel an empty cup. Often Mary smiles at this point and her carer fills the cup. If Mary turns her head away after the first sip, she means “no thank you” so the carer helps Mary to put the cup down on the table. The carer then offers a different flavoured drink.

A clear, consistent routine is essential to help a person understand what is about to happen. If they know what is happening, they can choose whether or not they wish to participate.

Objects used to help people know what is happening next are called “objects of reference”.

Objects of reference need to be introduced one at a time, to avoid confusing the person. It is best to start using objects for activities that motivate the individual.

Mandy loves tea - so her family and staff immediately agreed to give her a special mug to feel before she was given tea. She quickly learned to link feeling the mug with having a cup of tea so another object of reference was introduced.

Objects of reference are most likely to be accepted as a form of communication by people if they are frequently used. This is a powerful technique that can be extended to less frequent events. Some people who have visual impairment and learning disabilities may appreciate the opportunity to know further in advance what they will be doing. An object calendar can be most helpful.

Matthew looked forward to weekends when the routine in his flat was more relaxed. His brother would come on Saturday evenings and they would go out.

Matthew’s signing was very limited and he had no speech, so he could not easily ask or choose what to do in advance. His key-worker collected objects to represent the various things he might do - e.g., a beer mat (pub), some wheels (roller-skating) and a polythene box (McDonalds).

Matthew’s brother helped Matthew choose which activity he wanted to do by helping Matthew put the chosen object in a box. Once Matthew was confident of the system, he started to choose an activity independently by putting an object in the box as soon as his brother arrived.

Calendar boxes can help build structure to a day - for example Brian’s day looked like this:

Duster and polish = stay at home and clear up
Knife and fork = lunch
Swimming trunks = swimming
Knife and fork = evening meal

Calendars can be used to describe part of the day, a whole day or weeks or even months. They can include information about visitors or enablers for different activities. People with some useful vision may cope well with pictures or photos. Some people will find symbols useful, as they are small and discreet. Some people prefer a hook where objects can be hung up.

Object calendars or boxes must be placed where everyone will use them and not be overlooked.

It is important to note that some people may not remember objects that are not regularly used - they may not associate the object with the activity.

Orienting in space

People with multiple disabilities are very dependent on carers communicating about key locations in the environment. People should not be moved or asked to move until they know who they are moving with and have been given some clue about where they are going. This also gives the person the opportunity to choose whether or not they wish to move.

People may be helped by an object to tell them what will happen next, if they do not understand speech, signs and gestures. Alternatively an object may be used as well as speech, sign or gesture.

The communicative function of landmarks in the environment needs to be highlighted.

Richard is always guided from his bedroom to the front door using the same route. He always stops for a moment at the top of the stairs to touch the rail and his carer signs “down”, hand-over-hand, before guiding Richard down the stairs. They always stop at the bottom of the stairs and the carer signs “walk” on Richard’s hand.

By the front door, the carer asks Richard to “wait” using the informal gesture of pressing Richard’s palms together.

Tactile pictures may also help where naturally occurring clues need augmentation.

Joe, Miles and Andrew enjoyed their move to their new flat. However, they needed help to find their way around. Staff made some door pictures for key locations.

Tactile picture of flannels = bathroom
Tactile picture of small cushion on frame = sitting room

Staff made a point of helping Joe, Miles and Andrew to find and touch the picture before entering the room.

Tactile pictures can be visually beautiful as well as a useful clue to location. They can be framed against a contrasting background - they need to be firmly glued on, in order to withstand being felt frequently.

A note in using touch

You may have noticed that some people with multiple disabilities are fearful or uncomfortable with certain forms of touch. This is called being “touch sensitive” or “tactile defensive”.

People who are tactile defensive need help to gradually become more confident. You can make a useful start by noting down all the sorts of touch they tolerate or enjoy, and any forms of touch they dislike. This list can be shared by all the carers.

Some everyday touches can be adapted to make them more acceptable.

Veronica who is deaf and blind hates her hands or hair touched. However, she does tolerate a firm and friendly press on her wrist as a way of alerting her to the presence of carers. She does not like people working hand-over-hand with her (where the carer places their hand over Veronica’s). However, she is happier if people work hand-under-hand - in this situation she chooses to place her hands over the carers to get information.

Sharing information

Hopefully this factsheet will have given you ideas to extend the communication strategies that you are already using.

However, consistency is the key. If you are a parent or brother or sister of someone with multiple disabilities, you will have a wealth of information about how to communicate with your relative. Make sure that other carers know and understand these communication routines.

Staff need to share their methods of communication with you. The ideal is a team of people who communicate with each other, so that communication works well for the person with disabilities across all aspects of their life. If the person starts using a new way of communication everyone needs to know, to celebrate and to decide together how to support the person to use and enjoy their new skill.