A lot to say!

A guide for social workers, personal advisors and others working with disabled children and young people with communication impairments

A LOT TO SAY!

A Lot to Say!

This publication offers advice and information to social workers, Connexions personal advisors and others working with children and young people who have communication impairments. It will be of use in a number of settings – health, social services, education, and private and voluntary sector agencies. It is aimed at professionals who are not specialists in communication impairments, but who have responsibilities to assess the needs, and seek the views, of this important group of children and young people.

Drawing on the expertise of both those who work with young people with communication impairments, and young people themselves, the guide: ● summarises what gets in the way of communicating ● offers practical advice about getting to know how

someone communicates and how to find out their views

● identifies how you can help someone maximise their

communication potential

● lists the resources available to those working with this

group of young people

● provides information on the legal framework concerning

communication, and identifies sources of funding

JENNY MORRIS

A guide for social workers, personal advisors and others working with disabled children and young people with communication impairments Jenny Morris

Produced by Scope with support from the Community Fund

A Lot to Say! A guide for social workers, personal advisors and others working with disabled children and young people with communication impairments This publication offers advice and information to social workers, Connexions personal advisors and others working with children and young people who have communication impairments. It will be of use in a number of settings – health, social services, education, and private and voluntary sector agencies. It is aimed at professionals who are not specialists in communication impairments, but who have responsibilities to assess the needs, and seek the views, of this important group of children and young people.

Drawing on the expertise of both those who work with young people with communication impairments, and young people themselves, the guide: ● summarises what gets in the way of communicating ● offers practical advice about getting to know how

someone communicates and how to find out their views

● identifies how you can help someone maximise their

communication potential

● lists the resources available to those working with this

group of young people

● provides information on the legal framework concerning

communication, and identifies sources of funding

A Lot to Say! A guide for social workers, personal advisors and others working with disabled children and young people with communication impairments Jenny Morris

Acknowledgements

A number of people shared their expertise and experience to make this publication possible, and/or commented on a draft. I am indebted to: Luke Clements Helen Cockerill Omar Dadi Mary Jones AntonyJulyan Louisa Malkolski Ruth Marchant Caroline McKeith Maresa McKeith Marcus Page Gretchen Precey Sandy Reilly Pam Robertson David Sage Victoria Siegler James Thomas Adam Walker Holly Williams

Š Jenny Morris / Scope Research Department 2002 Published by Scope, 6 Market Road, London N7 9PW. Printed in England.

ISBN 0946828423

Contents

1 Introduction

1

2 Barriers faced by children and young people with communication impairments

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3 Getting to know you…

9

Some general points

10

Starting points

11

Parents’ and other family members’ role

14

The role of support workers/teachers/friends etc.

15

The role of advocates and interpreters

15

Meeting with the young person

15

Other important things to think about when meeting with the young person

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Young people and meetings

20

Meeting with a young person who uses sign language

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Using jargon

22

Making it possible for a young person to communicate about something they don’t like or which they are unhappy or angry about

22

Seeking the involvment of a Speech and Language Therapist

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Some final points about gaining the views of someone who you can’t ask questions of

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4 Helping the young person get their human rights to communication

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Some important first things to find out

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Some important points

27

Looking in more detail at someone’s access to communication

28

If a young person is moving

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Communication is for life

31

What young people have said helps to maximise their communication potential

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5 Useful resources

34

Organisations

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Publications and resources

40

Some examples of consulting with disabled children and young people, including those with communication impairments

45

6 Communication: Legal and regulatory framework, and sources of funding

47

Under 16s

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Sixteen and over

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Chapter 1 Introduction

This booklet offers advice and information to social workers, Connexions personal advisors and others working with children and young people who have communication impairments. It is hoped that it will be of use in a number of settings – health, social services, education, and private and voluntary sector agencies.

For the purposes of this booklet, communication impairment means a reduced, disordered1 or lost ability to communicate using spoken language. A social worker or personal advisor carrying out an assessment or review, or developing a transition plan, will usually rely on talking to the person concerned in order to gather information about their needs, and help them to think about how those needs could be met.

This booklet aims to help you do your job in situations where the person you are assessing or supporting does not use spoken language, or uses it in a limited or disordered way.

The focus is on helping young disabled people make their transition to adulthood, although much of the information will also be relevant to those working with someone of any age with a communication impairment. Transition planning starts for young people who have a Statement of Special Educational Need at the annual review of their Statement after their 14th birthday. Legislation and guidance relating to transition planning gives young disabled people some important rights, as does the Children Act and various pieces of community care legislation and guidance. Section 6 of this booklet explains the legal and regulatory framework, which gives young disabled people some important entitlements as they grow into adulthood.

1 The term ‘disordered’ is used here to include children and young people, such as some of those with autistic spectrum disorder, who may use a lot of speech but in a way which is difficult to understand or interact with.

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Research tells us that many young disabled people are not getting the help they need in order to have a good quality of life. Young people with communication impairments are particularly at risk of a very poor quality life in adulthood.

This booklet summarises what we know about what gets in the way of maximising the communication potential of these young people, what helps, and what resources are available to those working with this group of young people. A lot of the information comes direct from young people themselves who were consulted about their experiences. The booklet also draws on the experiences of social workers, speech and language therapists and others. It offers advice about how to ensure that a young person with a communication impairment is as involved as possible in assessments, reviews and planning.

Obviously, there are professionals who specialise in communication and in particular types of impairment.

This booklet is aimed at those who are not specialists but who may nevertheless have an important role to play in ensuring that young people’s communication needs are met. Social work assessments, and assessments carried out by personal advisors, should cover the young person’s communication needs. Communication needs should also figure in reviews, transition plans and personal action plans. Social workers and personal advisors will also of course need to work collaboratively with specialists such as speech and language therapists. Knowing about the barriers faced by young people with communication impairments and the opportunities available to them will help this working in partnership.

You have a key role to play in enabling young people with communication impairments to access their human rights.

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Chapter 2 Barriers faced by children and young people with communication impairments Communication is the sending and receiving of messages between people. Language is one way of doing this and the language may be spoken, written, typed, signed, or represented through symbols or pictures. There are also a large number of other ways of communicating, apart from language. These include tone of voice, sounds (crying, laughing, etc), facial expression, using parts of the body (like pointing, turning away, etc). The term ‘augmentative and alternative communication’ (AAC) is often used to refer to communication methods which supplement or replace spoken communication. The ACE Advisory Trust says that AAC ‘may range from any movement or behaviour that is observed and interpreted by another person as meaningful, to the use of a code agreed upon between people where items have specific meanings, i.e. a language… AAC is both a means of accessing an educational curriculum and language in its own right. It is appropriate for individuals who have difficulty with receptive and expressive language due to physical, sensory or learning disability. It provides an opportunity to attain emotional, social, educational and vocational goals’ (Ace Centre Advisory Trust, 20012).

Because the majority of people use spoken language to communicate, those who don’t often find that their way of communicating is unrecognised and undervalued.

Language conveyed through signs and symbols depends on others understanding the signs and symbols. Language conveyed through using computers and suchlike depends

2 Ace Centre Advisory Trust, 2001. Developing augmentative and alternative communication policies in schools, Ace Centre Advisory Trust.

See Resources for contact details.

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on the equipment being available, appropriate and usable.

Young people with speech impairments may find that their communication is poorly understood.

Although almost everyone uses body movements and facial expressions to communicate, those who rely on these methods for their main way of communicating often find their communication potential to be unrecognised and misunderstood.

By the time you meet a young person who has a communication impairment (perhaps in Year 9 at the start of transition planning) they may have experienced years of their communication needs not being adequately met. Here are some of the barriers to communication, identified by young people themselves and by their parents, which you should be alert to: ● Children who have communication impairments often

experience very low levels of interaction (verbal and non-verbal) from other children and adults. ● When children and young people are treated as if they cannot

communicate they sometimes ‘switch off’.

Gwen has no speech and significant physical impairments. Gwen’s mother described how, at Gwen’s previous school, she spent most of the time asleep. It was only when she changed schools and teachers and other children started interacting with her that she ‘woke up’ and responded.

Barriers faced by children and young people with communication impairments

● If children’s communication is not responded to, they may give

up trying to ask or tell. They may also feel very frustrated and angry, and may be labelled as having ‘challenging behaviour’. ● Children who do not use speech may not have the same

opportunities as their peers to develop literacy. This will limit their access to methods of communication that rely on words.

‘Being able to read would have helped. I still can’t really read. I left school last year.’ ● Communication systems may not have important words or

meanings in them. For example, children may not have access to words, symbols or signs about private parts of their bodies.

It is also quite common for communication systems to have a limited range of emotions represented. ● Communication systems may not have the words that are

most important to the young person.

Laura, who uses a communication book, did not have the names of her best friends in the book. ● Young people may not have had a recent assessment of their

communication potential and needs.

Jacob’s parents explained that his last proper assessment was when he was eight [he is now 14] and they were told he had ‘profound communication difficulties’. They understand how he communicates ‘Yes’ and ‘No’ and wonder whether he would be able to use a computer of some kind to communicate. ● A young person may have been assessed as needing to use

a particular communication system but may feel this has been imposed on them and therefore resist using it.

Although the speech therapist had said Mark could be taught to use Makaton, he continued to prefer to use sounds, pointing and other body language to convey his wishes.

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‘I’ve got this Liberator3 which they say I should use but I hate the voice and how big it is. I wish other people would make the effort to understand me, or that I could have a person to facilitate my speech.’ ● If the school or LEA purchases

a piece of equipment the young person may only be allowed to use it at school. Or they may not be able to take it with them when they leave school. ● At school or college, a young person may only have access

to a communication system or equipment in the classroom and not in the playground, dining hall, corridors, student common room, etc.

‘I only had my Liberator in the classroom. I wasn’t allowed to use it anywhere else. They said it was because it might get broken.’ ● The young person and those assisting them may need

training in order to use a piece of equipment, or to update it.

Luke’s parents and school got charitable funding for an expensive piece of communication equipment but have not so far been able to sort out adequate training. ● Equipment can be inappropriate.

Bob explained that his first communication aid was a plastic board, which was too big and slippery and so it kept falling off his lap.

3 A Liberator is one form of Voice Output Communication Aid (VOCA). It has a keyboard and/or symbols board and a computer ‘speaks’ sentences inputted by the user.

Jake uses a VOCA (voice output communication aid) and would like to be able to choose a cool voice with a southern English accent (instead of a North American accent), and with different tones of voice so when he said ‘I’m really angry’ it sounded really angry.

Barriers faced by children and young people with communication impairments

● People helping the young person, in whatever situation, will

need to know how to use their communication system.

‘Every time Mary goes to [the respite care centre] I have to explain all over again how to use her communication book – because there never seems to be the same staff working with her.’ ● The child or young person may spend time in situations where

no-one understands how they communicate. They may move between situations without information being passed on about how they communicate. ● Sometimes close childhood friends can

be important advocates and interpreters for a young person with communication impairments. Changing services or leaving school can mean losing contact with these friends and thus a reduction in communication opportunities.

‘I’d known Charlie since we started school and he understood my speech.

There’s no-one here who understands me like he did.’

Here is a list of things that a group of young people with communication impairments said really annoy them about other people’s ability to communicate with them: ● They don’t wait for me to finish what I’ve got to say – it takes

longer for me to use my communication book than if I was using speech ● They pretend they understand what I’ve said ● They finish my sentences for me without asking me whether

that’s OK – sometimes it’s OK sometimes it’s not but they should ask me ● They talk to the person who is with me and not to me

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● They ask me more than one question at a time ● They act as if I’m six months old.

Perhaps the biggest barriers to communication are experienced by those children and young people who have significant cognitive impairments (‘severe learning disabilities’) and/or autistic spectrum disorder. They are often treated as if they have nothing to communicate.

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Chapter 3 Getting to know you‌

All the legislation and government guidance which tells social workers and personal advisors what to do emphasises the importance of finding out the opinions of young people and putting them at the heart of any decisions about their future.

In order to achieve this for someone with a communication impairment, there are all sorts of things to bear in mind.

The following advice comes from young people, speech and language therapists, social workers and others working with young people with communication impairments. Some of it is common sense, some of it comes from experience.

The advice is aimed at people who are not in day-to-day contact with the young disabled person but who have some responsibility (as a social worker, Connexions advisor, Leaving Care advisor, etc) for finding out about their needs and their views, and for ensuring that their needs are met and their views listened to.

This section of the booklet gives advice about how to ensure you can communicate with the young person and seek their views. Section 4 is concerned with how you might go about judging whether their communication needs are being met and their communication potential maximised.

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Some general points

4 Edge, James, 2001.

Who’s in Control?

Decision-making by people with learning difficulties who have high support needs, Values into Action.

Available from VIA, Oxford House, Derbyshire Street, London E2 6HG. Tel: 020 7729 5436 Fax: 020 7729 7797 www.viauk.org 5 Caldwell, Phoebe, 2000.

You don’t know what it’s like: Finding ways of building relationships with people with severe learning disabilities, autistic spectrum disorder and other impairments, Pavilion Publishing.

Never believe it if someone says to you ‘he can’t communicate’, or ‘it’s impossible to find out his views or feelings’. Always start from the assumption that a young person is at least capable of expressing a preference.

Everyone expresses preferences – likes, dislikes, happiness, discomfort, etc. If you can recognise how someone expresses a preference, or a dislike, you are receiving a message from them. That is communication and it can lead to the young person having choice and control in their lives if these messages are acted upon (see Edge, 20014 for a helpful report about the potential for people with high support needs to be involved in decisions about their lives and also Caldwell, 20005, for ideas about how to build relationships with people with significant cognitive impairments and/or autistic spectrum disorder).

It is always a good idea to find out if the young person has a way of expressing ‘yes’ and ‘no’ (and ideally ‘maybe’ and ‘don’t know’). If they do then there are huge opportunities for communication.

However, if you are told the young person won’t understand you if you ask them questions you can use other methods to gain their point of view. Of course, you will also gather information from those who know them well but there is no substitute for spending time with the young person and trying to see things from their point of view.

Getting to know you…

Don’t try to assess for yourself how much the young person understands, particularly if it is the first time you have met them and/or you can only see them infrequently. ‘It takes much more knowledge of an individual or of the client group and it’s hard to be really sure even with a lot of experience. It’s better to focus on what the young person is doing and the communicative intent behind it, rather than attempting to assess how much they understand’ (Speech and language therapist). Here is a list of things which it has been suggested are ‘indicators of communicative intent’ (see See What I Mean by Nicola Grove: details in Resources), in other words, if the young person does any of these things you can assume that they are actively trying to tell you something: ● Alternating eye gaze: where a person looks at you, then at

something or someone else, then back to you again ● Clear waiting for a response ● Active seeking of proximity: a person moves to follow, or sit

close to someone ● Systematic variation in behaviour: if you fail to respond,

the person will repeat, elaborate or change the behaviour ● Persistence and intensity of behaviour: if a person repeats

the same behaviour in different situations and with different people and seems to do so forcefully.

If someone is intentionally communicating in any of these ways it will be possible to have some form of a dialogue with them, particularly if you spend time with them and get to know them.

Starting points When a young person is referred to you, the referral will usually include information about their impairment or medical diagnosis. This is in fact not the information you need before meeting them for the first time. For example, someone may be recorded as having cerebral palsy but this doesn’t tell you

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anything about their communication – they may have no difficulty with speech or understanding, or they may have speech which is difficult for strangers to understand, or they may use a piece of equipment to enable them to talk, etc.

Another person may be recorded as having ‘severe learning disabilities’. But does this mean they use Makaton to communicate? Or behaviour and body language? So the following are useful questions to ask before even meeting them: ● How does the young person prefer communicating? ● What will I need to know or do in order to understand them?

Will I need someone else’s assistance?

You may also find the checklist at the beginning of section 4 of this booklet useful.

Don’t underestimate your own skills or ability to learn.

If the young person uses any form of sign language (such as Makaton), it will be easy to learn the basics of ‘hello’, ‘My name is…’, etc. If you can communicate directly with them at least at the beginning and end of your conversation it will help to build a relationship.

The Royal National Institute for Deaf People – RNID – has an interactive website for learning fingerspelling as well as leaflets with the manual alphabet and 100 BSL signs; see also Triangle’s communication handbook, Two Way Street, which lists all the different systems of communication – see Resources for details.

Getting to know you…

The information and advice in this booklet will help you prepare for meeting with a young person but once you know something about the way they communicate you may need to seek further advice and information. For example, the RNID publishes useful leaflets (in print and on the web) about communicating with people who lipread, how to find and work with a sign language interpreter, etc. (see Resources for contact details).

Part of your role will be to provide information to the young person, to help them make choices. You therefore need to find out what is the best way for them to receive information: ● Does information need to be in large print, Braille, on tape,

video, using pictures and/or symbols? ● Do I need to enable the young person to try things out so that

they gain the necessary information to make choices?

Don’t feel you have to start from scratch when thinking about producing accessible information. Lots of organisations can give you advice about meeting particular access needs.

For example, the RNID has produced a leaflet, Stop…before producing information for deaf and hard of hearing people.

Those teaching the young person may already be using a computer software package, which could be used to produce the information you need to give them.

Before meeting the young person for the first time, it is a good idea to send them information, in a format accessible to them, about who you are and why you are coming to see them.

Sending a photo, video, or tape can sometimes be helpful.

The young person will usually need to trust you in order to communicate with you and that trust will only come with time and familiarity. Yet your role will often require/assume that trust is built up immediately. This may not be possible and in this situation you may need to draw on the help of those who know the young person well.

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It is important that you take time to prepare for meeting the young person: try to think about the experience of the meeting from their point of view. You may be able to take some things with you which will aid communication: a thick black felt tip pen and pieces of card mean you can make instant symbols if required; taking along pictures of things you want to talk about with them can help. A disposable camera is a useful ‘aid’ – you can use it as a record of the meeting for them; or leave it with them for the young person to take photos of things they want to tell you about next time you see them.

Parents’ and other family members’ role Parents see their child through all the transitions they make and have a valuable role to play. They can be hampered in this role by: lack of information, low expectations (which are sometimes encouraged by professionals’ attitudes) and unhelpful attitudes held by some professionals. You can help parents to advocate for their child’s best interests by ensuring they have all the information they need and encouraging them to be ambitious for their child.

Parents may act as a facilitator for their child (for example helping you understand their speech, their behaviour or helping their child to use a communication system).

They may also advocate for their child’s interests. Both roles may be invaluable to you but it is important that parents are not used as a substitute for independent interpreters or advocates, if this support is important in the assessment and planning process.

Other family members may also be helpful to you in establishing communication and a relationship with the young person. Siblings may be a valuable source of information about preferences and experiences, and grandparents or other family members may also be an important resource.

Getting to know you…

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The role of support workers/teachers/friends, etc.

There may be someone in the young person’s life, apart from their parents, who is particularly good at communicating with them. It might help to find out who this is and enlist their help in your interaction with the young person. Children and young people should be consulted about who they want to help.

Friends can sometimes be particularly good at interpreting and advocating. However, like parents, support workers, teacher and friends should never be used as a substitute for independent advocates and interpreters where these are needed.

The role of advocates and interpreters Advocates and interpreters should be independent in the sense that they are not related to the young person and are not employed by their school, college, children’s home etc.

You will probably need to identify funding to pay for an advocate or interpreter.

A good advocacy or interpreting service will have a Code of Conduct6 or similar which sets out the role of the advocate or interpreter, making clear the boundaries within which they operate. Professional services like this will be an invaluable channel of communication between yourself and the young person, and may be an essential part of enabling you to assess, review and plan to meet the young person’s needs.

Meeting with the young person When meeting with the young person, try to ensure: ● that s/he knows who you are and what you are there for ● how long you will be spending with him/her and when/whether

you will come again

6 As part of the Quality Protects programme, the Department of Health will be issuing Standards for advocacy services in the summer of 2002.

The document will be posted on www.doh.gov.uk/ qualityprotects/

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● that s/he feels able to bring your visit to an end if s/he feels

s/he wants to – either for a short interval or completely.

You can do this by agreeing how s/he will let you know when s/he wants to stop ● that the young person feels s/he is going to get something out

of the meeting: what’s in it for them? ● that you are in a venue which helps rather than hinders

communication: is it private, comfortable, quiet? Is it somewhere that the young person feels comfortable in? ● that the meeting takes place at a time which is OK for

the young person. Is s/he likely to be tired if you see him/her at the end of a school day? Has s/he been taken out of a lesson or activity in order to meet you? ● that there is no background noise which is going to make

it difficult to communicate ● that you and they are in a physical position which aids

communication. Do you need to sit opposite or alongside them (you might need to sit alongside them in order to see what they are pointing to in a communication book for example)? Are you at the right level? Are you close enough for them to pick up what you are communicating/are you too close? Is the lighting level and direction right?

Ensure that you speak directly to the young person on meeting them, even if you are uncertain about how much they understand.

You will also need to plan for the meeting taking longer than it would if you were meeting with a young person who uses speech.

When communicating with the young person: ● don’t panic if you feel disempowered by uncertainty or

unfamiliarity or your own feelings of inadequacy

Getting to know you…

● don’t react to your feelings of disempowerment

by trying to take more control of the situation ● slow down and watch and wait ● don’t give in to the temptation to fill every pause

in the conversation. The young person may be preparing the next thing to say to you ● look out for other methods of communication,

such as facial expressions and gestures – these can tell you when someone has something to say, when they have finished what they have to say, and also important things about how they feel ● if someone is using a piece of equipment or

another person to help them communicate, avoid looking at the equipment or other person all the time – make sure you have eye contact with the young person and are picking up on any facial expressions or body language ● remember that people often have a tendency

to say ‘Yes’ to a question. Sometimes because this is what they think you want to hear ● make sure that you and the young person have a common

understanding of any words you are using ● if you think it’s possible to guess the end of a sentence ask

them if it’s OK to do this. Sometimes people welcome this because it speeds up conversation, sometimes they have too many experiences of people getting it wrong so they won’t want you to do this ● don’t assume you know what the young person is going to say

or what they want to talk about ● don’t assume that just because someone does not use

speech they do not have a lot to say.

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‘The most important thing is that people shouldn’t pretend to understand me when they don’t.’

It is embarrassing when you don’t understand someone – especially if they are trying very hard to tell you something.

Accept that you may feel embarrassed and inadequate.

Ask the person to try a different way of telling you something – by mime, gesture, showing, spelling out a word, for example.

Ask them if there is anyone who could help you understand what they are saying. If nothing works, acknowledge that you haven’t understood what they’re saying but promise to come back to it. Usually the longer you spend communicating with someone, and the more times you meet with them, the better you will be at understanding them.

‘People sometimes get it into their heads that they won’t understand me and that makes it harder for them to understand me. But I would say to them: don’t be afraid or embarrassed if you get it wrong.’

Getting to know you…

Other important things to think about when meeting with the young person Don’t introduce a new system of communication – e.g. a package for carrying out reviews using symbols or pictures – without checking out how this might fit in with the young person’s preferred method of communication.

If meaning is conveyed by facial expression or body language this will be lost to someone with a visual impairment or with a social/communication impairment (eg autistic spectrum disorders). When using speech we often illustrate or convey the meaning of what we’re saying by non-verbal means.

Someone who cannot see facial expression or body language will not pick this up (but they may pick up tone of voice).

If meaning is conveyed by tone of voice this will be lost to someone with a hearing impairment. Again, the exact meaning of spoken words can vary enormously according to the tone of voice in which they are said. Try to use words and phrases that are clear and unambiguous if you are meeting with someone who cannot hear your speech (but they may pick up facial expression and body language).

It isn’t just people with visual or hearing impairments who may find facial expressions or tone of voice difficult to pick up.

For some people with autistic spectrum disorder, understanding can be inhibited when the meaning of words has to be derived from additional cues such as gestures, facial expressions or tone of voice.

Figures of speech can be difficult for some people to understand or they may take them literally. Check out beforehand if this is likely to be a problem. It’s surprising how often we use figures of speech in everyday conversation (Afasic has published a list of 203 figures of speech compiled by children, see Resources for details).

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Abstract ideas or concepts can also be difficult for some people. Again check this out beforehand.

Short cuts can also be difficult to understand – ie where some of the message is expressed and the rest has to be inferred.

Don’t ask a question by using a negative, for example: ‘Don’t you want to go swimming?’ as it can be confusing to know what ‘Yes’ or ‘No’ means in response.

Never use double negatives when asking a question (e.g. ‘So you would never not go swimming?’). This can be surprisingly difficult! Also, don’t ask several questions at once (e.g. ‘Do you want a cup of tea, or coffee or a drink of orange?’) and never answer your own questions (e.g. ‘do you like Maths? No, I’m sure you don’t!’)

It can be difficult to always remember the impact of someone’s impairment on them. For example, if you are used to being able to see people’s faces clearly, you will be picking up messages conveyed by facial expression without even thinking about it. While you may know that the young person you are talking to has a visual impairment it is sometimes hard to keep being aware of how this might affect their interaction with you. It can be easy to underestimate or misinterpret someone’s ability to understand or co-operate if you do not keep in mind how their impairment affects them. So keep asking yourself how someone’s impairment may be affecting what they are picking up or how they are responding – rather than their ability to understand or their wish to co-operate.

Young people and meetings In principle young people should be present when their needs are being discussed, plans for their future drawn up, and reviews carried out. However, many young people find such meetings – as they are usually organised – disempowering and for some their presence is no more than tokenistic because meetings require a high degree of spoken communication skills. Be clear that a meeting may meet your,

Getting to know you…

and other professionals’, communication needs but not the communication needs of the young person. Adjust what you do so that everyone’s communication needs can be met.

Richard’s social worker spent time with Richard to see how he experienced the respite care placement: she was there when he arrived for a weekend and had a meal with him. She talked to his keyworker, his mother and also to his friend, who – unlike Richard – had a consistent way of indicating ‘yes’ and ‘no’ in response to questions.

She told them what she was going to say at the review meeting about Richard’s views and they agreed.

‘I emailed my social worker a list of all the things I wanted to happen in the next few months, and what I thought was stopping me. This was better than telling him face to face because it takes too long for him to understand what I’m trying to say. He emailed me what he was going to put down… I didn’t agree with some of it so I told him he hadn’t paid attention to what I’d written!’

Meeting with a young person who uses sign language Some important points: ● If you will need an interpreter, make sure you organise this

well in advance ● Don’t assume that a young person’s teacher or parent will act

as interpreter ● Find out how often the sign language interpreter needs

a break ● Look directly at the child or young person ● Don’t cover your mouth ● Address the young person, not the interpreter ● Use facial expressions and gestures – for example nod rather

than say ‘mmmm’.

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A Lot To Say

Using jargon People working in a particular setting often use words which have particular meanings within that setting, and which sometimes don’t make sense outside that setting. This can have one of two implications for communicating with young people. They may share the common understanding of the jargon, in which case it’s a good idea to use it. For example, the interviewer on one research project found that it was no good asking a disabled young man if he had had a meeting with workers to talk about his future. It wasn’t until the interviewer asked ‘have you had a review meeting’ that the young man understood what he was being asked about.

In other situations, however, a young person may not know what a particular word (or acronym) means, in which case using it can get in the way of communication.

‘The social worker kept talking about PCP [Person Centred Planning]. I didn’t know what she meant, I kept thinking she was saying TCP and it just made me think of sore throats and gargling!’

Making it possible for a young person to communicate about something they don’t like or which they are unhappy or angry about It can be very difficult for any of us to say that we don’t like someone, or to criticise the way someone behaves towards us. Young disabled people may find this even more difficult, particularly if they are dependent on the person for help in their daily life. Some things to bear in mind are: ● Be aware that the young person may not feel safe enough

to make a complaint or to express a negative opinion about a person or a service. ● It may be easier for them to give negative opinions about

‘safer’ things, like food, before moving on to more difficult areas. This is also a way of checking out your understanding

Getting to know you…

23

of how they communicate negative feelings (see the useful discussion in Lewis, 20017). ● On the other hand, don’t over-react to minor negative things –

they will then feel unable to tell you worse things.

If you are seeking the involvement of a Speech and Language Therapist (SLT) to help you in your communication with the young person and/or to carry out an assessment: ● find out what the involvement of the SLT service is or has

been with the young person ● give the SLT service plenty of notice that you need

its involvement: most SLT services are very over-stretched ● be aware that the young person may not have an SLT

allocated to them as an individual. The SLT service may be giving support to teachers or Learning Support Assistants ● each SLT service should have a specialist in augmentative

and alternative communication and it may be that this person’s involvement would be helpful ● if you want the SLT service to help you with an assessment,

review or interview with a young person, be clear what information you will be seeking from the young person ● if the speech and language therapist does not work in an

empowering way with the young person, don’t let this put you off. Seek out someone who specialises in augmentative and alternative communication ● some voluntary organisations may be able to offer important

advice and information (see Resources List).

7 Lewis, Maddy, 2001.

Learning to Listen: Consulting with children and young people with disabilities, Save the Children. Available from: Save the Children, 17 Grove Lane, London SE5 8RD, Tel: 020 7703 5400.

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A Lot To Say

Some final points about gaining the views of someone who you can’t ask questions of Even when someone has a high level of cognitive impairment (‘severe learning disabilities’) it is important to try to gain their point of view. You can maximise your chances of doing this by: ● spending time with the person and assessing how they

are experiencing things ● talking to those who know them well ● seeking the views of more than one person who knows

the young person ● paying more attention to the views of the people who treat

the young person with respect than those who do not ● finding out if there is someone close to them of their own age

who can tell you about the young person and their views.

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Chapter 4 Helping the young person get their human rights to communication

Social workers, personal advisors etc will have an important role to play in helping a young person maximise their communication, both in the short and in the long term.

Assessments, reviews, care plans, personal plans and transition plans should all address communication requirements. Experience shows that it can take a long time to sort out the necessary funding and provision of communication aids and support, so it is important that you focus on communication needs in the early stages of your work with young people.

Some important first things to find out When assessing whether someone’s communication needs are being adequately met, find out: ● how the young person prefers communicating: they may have

been given a particular communication system but this may not be what they use most naturally ● how they make choices ● how they indicate ‘Yes’ and ‘No’ (and, ideally, ‘don’t know’

and ‘maybe’) ● how they ask for basic needs to be met

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A Lot To Say

● how they attract attention ● how they ask for something that’s not there ● how they indicate that they don’t want something/have had

enough/want a change ● how they share experiences of interest to them ● how they express opinions and/or show their feelings ● how many people in his/her life are competent in

communicating with him/her ● how they socialise with their peers.

If the young person has a communication system (e.g. a communication book or equipment) find out: ● how do they access the communication system? ● is the communication system available to them all the time? ● how do they indicate that they want to use it? ● what do they think of their communication system? ● is there anything they would like to change about their

communication system? ● are there other access needs getting in the way of using

a communication system or piece of equipment, such as seating or mobility needs, suitability of computer keyboard, mouse or monitor, size of communication book, etc?

An occupational therapist’s assessment may be required to address these barriers.

Helping the young person get their human rights to communication

In addition, find out: ● does the communication system have the

words/pictures/symbols about the things important to the young person? ● what opportunities are there for adding

words/pictures/symbols and how often does this happen? ● is the communication system compatible with the young

person’s first language and with his/her parents’ first language? ● if the young person has more than one language does the

communication system accommodate this?

The young person will usually have many different ways of communicating. Their methods may vary according to what they are doing, their physical environment, who is around. Find out: ● are they able to communicate their wishes at all times –

e.g. in the shower, when they go to new places? ● do they have different access needs according to where they

are and what position they are in? For example, lying down in bed, when using transport? Are these needs met adequately?

Some important points ● Don’t assume that, just because a young person is in

a special school or specialist college, their communication needs have been properly assessed and responded to. ● Don’t assume that a young person has had necessary eye or

hearing tests recently. ● Check for obvious things, like whether a young person’s

glasses are cleaned regularly, or a hearing aid is switched on and working properly. ● Be alert to the impact of undiagnosed medical conditions

(including depression).

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A Lot To Say

● Be alert to the side effects of medication. Does medication

need to be reviewed?

Perhaps the most important point is to identify what is best for this particular child or young person. Research and theory may tell us what works for most, but it won’t tell us what works for this particular person. For example, research and practice tells us that many children and young people with autism respond better when there is routine and structure in their lives and respond poorly to change and uncertainty. On the other hand, this is not true for all children and young people with autism: ‘We need to be open to individual differences and not fall into autism stereotypes’ (Clements and Zarkowska, 2000, p.1338).

Looking in more detail at someone’s access to communication Although you are not a specialist, you can make a judgement about whether someone is being helped to maximise their communication potential or whether further assessment and/or assistance/equipment is needed.

Communication Matters (a national voluntary organisation – see Resources) suggests that these are the kinds of questions to ask in order to find out if someone’s communication system has a flexible enough vocabulary9: 8 Clements, John and Zarkowska, Ewa, 2000.

Behavioural concerns and autistic spectrum disorders, Jessica Kingsley Publishers.

9 The following advice is taken from Communication Matters leaflet Focus on…

What can I say?

Vocabularies for augmentative and alternative communication (AAC) systems, available from Communication Matters, see Useful Resources for details.

Does the vocabulary have words to help the person: ● start, end and control conversations (e.g. Can I ask you

a question? OK, I’m off now. I’d like to talk to you about…) ● say what you want, what you need, and how you feel

(e.g. I want to – or don’t want to – watch TV now. I need to go to the bathroom. I’m feeling a bit fed up just now.) ● clear up misunderstandings (e.g. That’s not what I meant.

I’ll say it another way.)

Helping the young person get their human rights to communication

● say things that you have never said before in your life

(e.g. Will you marry me?) ● talk about your interests (e.g. That photo has a good depth

of field.) ● ask questions (e.g. What did you do on holiday?) ● make positive and negative comments (e.g. I really like that.

I think that class is boring.) ● say things angrily, politely, cheekily (e.g. When are you going

to make that cup of tea – I asked you 10 minutes ago! Please can I have a cup of tea? I’ll die of thirst before you get round to making that cup of tea!) ● tell jokes (e.g. Knock, knock: Who’s there?…)

Communication Matters also suggests that an AAC user needs a vocabulary reflecting their: ● personality ● age ● culture ● gender.

Ruth Marchant from Triangle points out that ‘Young people who rely on an adult-controlled vocabulary often have little or no access to words or symbols around rights, safety, sexuality and private body parts. This reflects in part our general reluctance to address these issues with disabled young people, and also reflects gaps in many existing symbol vocabularies in these more difficult areas.’ The Signalong Group produce signs and symbols around personal safety aimed at adults; Triangle (see Useful Resources for contact details) and the NSPCC are working on a series of images on rights, safety, sexuality and private body parts which will be freely available on the internet.

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A Lot To Say

Communication Matters points out that everyone’s vocabulary is made up of: ● everyday words ● personal words, e.g. the places,

people and activities that are important to the individual ● special words, e.g. jokes,

specific interests, words about a job, hobby or school work, special events words, such as for a holiday, sports day etc.

It will be very important that the young person is involved in choosing what words are available to them, particularly for the personal and special words. It is also essential that words, particularly special words, are updated regularly.

Perhaps most importantly, think about what kind of language non-disabled teenagers use – does this young person have the means to tell someone to ‘piss off’?

These are all things that you can check when assessing someone’s needs or helping them to realise their aspirations.

If a young person is moving – between classes, schools, away from home, etc – their communication potential needs to be protected and promoted. Find out: ● if the young person has a communication system does it go

with them, wherever they go? ● how is information given to new acquaintances about how

the young person communicates? ● if the young person is leaving school or home, what

preparation is being made to meet their communication needs in the new environment?

Helping the young person get their human rights to communication

● what arrangements are being made to maintain their

communication with those important to them who they are leaving behind? ● if the young person has a communication system,

what arrangements are there for adding new words/symbols/pictures which will be needed in the new environment? ● what arrangements will there be in the new setting for

re-assessment of communication needs and upgrading, repairing and maintaining communication systems?

‘Communication passports’ are one idea for ensuring continuity in meeting communication needs (see Useful Resources ).

Communication is for life It is important never to assume that someone’s communication needs have been met once and for all. Young people in transition to adulthood will particularly benefit from regular checks that their communication opportunities are increasing. These opportunities will depend on: ● the confidence of the young person ● opportunities for meeting new people

and developing new interests ● continuing access to learning ● continuing updating of the young person’s

vocabulary to reflect what should be a period of many changes in their life (just as non-disabled young people’s transition to adulthood is usually dominated by change) ● communication needs being met in the context of new

experiences and new people

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A Lot To Say

● changes in experience of impairment (for example if

someone has a progressive condition where their physical or cognitive ability will decrease, or if their physical or cognitive ability improves in some way) ● advances in technology – email, instant messaging and

texting, for example, have opened up new channels of communication for everyone, and these channels can often be made accessible to disabled young people.

Transition plans should include action to be taken to increase communication opportunities and reviews should check how well this action is working.

‘When I moved from school to college me and my mum used direct payments to employ a facilitator. She comes with me to college and also sometimes if I go out with friends. When I see my social worker she asks me about making friends and what I do with them. I couldn’t have made new friends if I didn’t have Rachel [the facilitator].’

‘One of the things in Rosemary’s transition plan was for her to have the opportunity of going out and meeting new people, and also to have more people she could communicate with. Up until then she had to have myself or her father with her when she went out but we were put in touch with a project that provided a support worker, she’s only a few years older than Rosemary, and who goes out with her. We showed her how Rosemary communicates – by body language and sounds mainly – and now they really get on well together and Rosemary’s done things and met people that she would never have done if she had just been left with her parents.’

Connexions personal advisors can provide support to young disabled people up to their 25th birthday. When responsibility for providing support is passed to adult social services it will be important to ensure that communication needs continue to be addressed.

Helping the young person get their human rights to communication

What young people have said helps to maximise their communication potential ● My family always had high expectations of me – my mum

and granddad always expected me to learn to read. ● When I was young my mum would send me on errands

with a note. I got out and about as much as my brothers and sisters. ● People who listen to what I’ve got to say and act on it. ● I’ve always had lots of opportunities to choose. ● Having friends. ● I have a friend who helps me when I’m tired and can’t really

talk straight. I trust her to help me make sense. ● I like chatting with my best friend who really listens and I listen

to him. ● You need to try things out. I tried using a Liberator but it was

very big and heavy and not manageable. I then had a Delta Talker but my Lightwriter is best I think. ● I wish I’d had a mobile and computer when I was younger.

It’s made a big difference – now I can keep in touch with friends by email and by texting.

And finally…

An experienced social worker advises: ‘What’s most important is to believe in the young person’s potential or actual ability and to have on-going expectations of them. They need to know you have a genuine interest in getting to know them, in establishing communication with them, and to making a difference in their lives.’

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Chapter 5 Useful resources

If you are working with a child or young person with communication impairments, you may find it helpful to know about the following organisations and resources. The organisations’ own words have been used, where possible, to describe what they do.

Organisations ACE Centre – North ‘offers a wide range of services to support communication and learning through the use of Assistive Technology (AT) and Alternative and Augmentative Communication (AAC) systems and resources for children and adults with physical and communication difficulties.’ Serves the North of England – from the Midlands to the Scottish Border.

The ACE Centre – North Broadbent Road Watersheddings Oldham OL1 4HU Tel: 0161 627 1358 Fax: 0161 627 0363 enquiries@ace-north.org.uk www.ace-north.org.uk

ACE Centre ‘We are an independent charity whose role is to be a centre of information, support, and training for parents and professionals in the use of technology for young people in education who have communication difficulties, both in speaking and/or writing.’ Serves the South of England and Wales.

ACE Centre Advisory Trust 92 Windmill Road Headington Oxford OX3 7DR Tel: 01865 759800 Fax: 01865 759810 info@ace-centre.org.uk www.ace-centre.org.uk

Useful resources

Afasic ‘Afasic is the UK charity representing children and young adults with communication impairments, working for their inclusion in society and supporting their parents and carers.’

Afasic 2nd Floor 50-52 Great Sutton Street London EC1V 0DJ Tel: 020 7490 9410 Fax: 020 7251 2834 info@afasic.org.uk www.afasic.org.uk British Deaf Association 1-3 Worship Street London EC2A 2AB Tel: 020 7588 3520 Textphone: 020 7588 3529 info@bda.org.uk www.bda.org.uk

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British Educational Communications and Technology Agency [BECTa] ‘exists to further the use of information and communications technology (ICT), to raise educational standards and to improve the effectiveness of educational professionals and institutions.

Becta is the government’s lead agency for ICT in education and is charged with developing the National Grid for Learning (NGfL).’

BECTa Milburn Hill Road Science Park Coventry CV4 7JJ Tel: 024 7641 6994 Fax: 024 7641 1418 becta@becta.org.uk www.becta.org.uk

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A Lot To Say

CENMAC ‘is a central resource for pupils with physical disabilities supported by the inner London boroughs. We are a small team of advisory teachers with backgrounds in mainstream and special schools as well as specialist knowledge of how Information and Communication Technology (ICT) can be helpful.

The Director is also an Occupational Therapist. We assess the needs of pupils from nursery to the end of secondary education. Unlike other assessment centres, we loan equipment and train staff and pupils how to use it. We also take care of maintenance and review the situation every year.’

CENMAC Charlton Park School Charlton Park Road London SE7 8JB Tel: 020 8854 1019 Fax: 020 8854 1143 cenmac@greenwich.gov.uk www.cenmac.demon.co.uk

Circles Network ‘Circles Network is a national voluntary organisation based around the key principles of inclusion and person centred approaches. We provide unique personal support for people who are in danger of becoming socially excluded, or who are currently suffering the consequences of prior segregation and discrimination. We use the tools of Person Centred Planning to facilitate inclusion in the community, principally through the setting up Circles of Support and through our individual projects for specific areas of need.’

Circles Network Pamwell House 160 Pennywell Road Upper Easton Bristol BS5 0TX Tel: 0117 939 3917 Fax: 0117 939 3918 mandy@circlesnetwork.org.uk www.circlesnetwork.org.uk

Useful resources

Communication Matters ‘is a UK national voluntary organisation of members concerned with the Augmentative and Alternative Communication (AAC) needs of people with severe communication difficulties. It is also the UK Chapter of the International Society for Augmentative and Alternative Communication (ISAAC) and is a core member of the Communications Forum.’

Communication Matters c/o The ACE Centre 92 Windmill Road Headington Oxford OX3 7DR Tel: 0870 606 5463 Fax: 0131 555 3279 admin@communicationmatters.org.uk www.communicationmatters.org.uk

Foundation for Assistive Technology ‘The FAST database comprises a comprehensive index of assistive technology (AT) research and development, equipment manufacturers, researchers, charities, funders and other organsations. There is also a calendar of AT events. Users of AT are invited to submit an “I wish” for equipment they need that is not currently available.’

FAST Mary Marlborough Centre Windmill Road Headington Oxford OX3 7LD Tel: 01865 227599 Fax: 01865 227294 info@fastuk.org www.fastuk.org

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A Lot To Say

ICAN ‘is a national educational charity providing services for children, from pre-school to school-leaving age, with speech and language impairment.’

ICAN 14 Dyers Building Holborn London EC1N 2OP Tel: 0870 010 4066 Fax: 0870 010 4067 fmcmahon@ican.org.uk www.ican.org.uk Makaton Vocabulary Development Project ‘Makaton is a unique language programme offering a structured, multi-modal approach for the teaching of communication, language and literacy skills. Devised for children and adults with a variety of communication and learning disabilities, Makaton is used extensively throughout the UK and has been adapted for use in over 40 other countries.’

Makaton Vocabulary Development Project 31 Firwood Drive Camberley Surrey GU15 3QD Tel: 01276 61390 Fax: 01276 681368 mvdp@makaton.org www.makaton.org

National Deaf Children’s Society 15 Dufferin Street London EC1Y 8UR Tel: 020 7490 8656 Fax: 020 7251 5020 Information & Helpline: 0808 800 8880 (voice & text) www.ndcs.org.uk Royal National Institute for the Blind (RNIB) 105 Judd Street London WC1H 9NE Tel: 020 7388 1266 Textphone: 0800 515152 Fax: 020 7388 2034 helpline@rnib.org.uk www.rnib.org.uk Royal National Institute for Deaf People (RNID) 19-23 Featherstone Street London EC1Y 8SL Tel: 020 7296 8000 Textphone: 020 7296 8001 Fax: 020 7296 8199 informationline@rnid.org.uk www.rnid.org.uk

Useful resources

Sense, The National Deafblind and Rubella Association 11-13 Clifton Terrace London N4 3SR Tel: 020 7272 7774 Textphone: 020 7272 9648 Fax: 020 7272 6012 enquiries@sense.org.uk www.sense.org.uk Signalong Group works to ‘empower children and adults with impaired communication to understand and express their needs, choices and desires’.

Signalong Group Communication and Language Centre North Pondside Historic Dockyard Chatham Kent ME4 4TY Tel: 01634 819915 Fax: 01634 814417 www.signalong.org.uk

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Triangle ‘provides training, consultation and advice across the UK for professionals concerned with children with complex needs, including consultation and communication with children and young people. Information about different communication systems is freely downloadable from Triangle’s website and, from May 2002, images for vocabulary on rights, safety, sexuality and private body parts also.’

Triangle Unit 310 91 Western Road Brighton East Sussex BN1 2NW Tel: 01273 241015 Fax: 01273 891595 info@triangle-services.co.uk www.triangle-services.co.uk

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A Lot To Say

Useful publications and resources Augmentative Communication in Practice: An Introduction.

Overview of AAC, covering both low-tech and high-tech methods, concerning both children and adults.

Available from: The CALL Centre Paterson’s Land Holyrood Road Edinburgh EH8 8AQ Tel: 0131 651 6236 call.centre@ed.ac.uk Communication Matters Leaflets: Communication Matters produces a series of short leaflets, Focus on: Accessing communication aids and computers First Steps How to be a good listener Using symbols for communication What can I say?

What is AAC? See Organisations for contact details.

Communication without speech: augmentative and alternative communication. ‘This ISAAC book, written by Anne Warrick, is a highly accessible but very comprehensive introduction to Augmentative and Alternative Communication.

It contains lots of questions and practical tips such as vocabulary selection, assessment, education and vocational considerations, making communication boards, and includes excellent photographs and illustrations.’ £15 plus £1.50 p&p from Communication Matters (see above).

Developing augmentative and alternative communication policies in schools: Information and Guidelines. Produced by the ACE Centre Advisory Trust, ‘this document sets out to define Augmentative and Alternative Communication and the rationale behind it in the context of education and legal frameworks. In addition, it offers information and guidelines to local education authorities, schools and health professionals about meeting the highly specialised and individual needs of pupils with AAC requirements.’

Available from: ACE Centre Advisory Trust. Also on website (see Organisations).

Useful resources

Don’t Leave Us Out: Involving disabled children and young people with communication impairments,

by Jenny Morris, published by: Joseph Rowntree Foundation/ York Publishing Services 64 Hallfield Road Layerthorpe York YO31 7ZQ Tel: 01904 431213 Describes the process of interviewing young people who had communication and/or cognitive impairments. Includes checklists and covers gaining consent, planning visits, using facilitators and ‘being with’ young people as a means of finding out their views.

Enabling communication in children with autism,

by Carol Potter and Chris Whittaker, published by: Jessica Kingsley Publishers 116 Pentonville Road London N1 9JB Tel: 020 7833 2307 www.jkp.com An exploration of the communication capabilities of children with autism and the ways in which communication environments in schools can enable or disable them in their attempts to become spontaneous communicators.

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I’ll Go First: The Planning and Review Toolkit for Use with Children with Disabilities, Good Practice Guide published by: The Children’s Society Publishing Department Edward Rudolph House Margery Street London WC1X 0JL Tel: 020 7841 4415 Fax: 020 7841 4500 www.childrenssociety.org.uk Michelle finds a voice ‘This book is a story about Michelle, a young adult with disabilities who is unable to speak or communicate effectively. A number of events cause her to feel unhappy and isolated until she and her carers are helped to overcome the communication difficulties. Various solutions are explored, including the use of signing, symbol charts and electronic communication.’ £10 plus £1.50 p&p from Communication Matters.

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A Lot To Say

Multimedia profiling A multimedia profile ‘is a computer-based audiovisual diary (video, photographs, sound, graphics and text) of a person’s daily activities and personal history…

It is an empowering process that builds more equal relationships – increasing awareness of non-verbal communication to open up a deeper, user-led engagement with individual experiences and personal expression.’

Information available from: Acting Up Unit 304 Mare Street Studios 203-213 Mare Street London E8 3QE Tel: 020 8533 3344 Fax: 020 8533 5511 acting-up@ geo2.poptel.org.uk www.acting-up.org.uk

Personal Communication Passports ‘CALL has developed and pioneered Personal Communication Passports, a new way of documenting and presenting information about children and adults with disabilities who are unable to speak for themselves. Passports are being developed in a number of pilot sites.

The CALL Centre in Edinburgh (Communication Aids for Language and Learning) provides specialist expertise in technology for children who have speech, communication and/or writing difficulties, in schools across Scotland. http://callcentre.education.ed.ac.uk Communication Passports were also developed by the Futures Project, part of the Choice Initiative funded by the Foundation for People with Learning Disabilities. They are described in the report Everyday lives, everyday choices, pages 26-27 (published by Foundation for People with Learning Difficulties, 7th Floor, 83 Victoria Street, London SW1H 0HW Tel: 020 7802 0300).

Useful resources

Plain English Campaign leaflets on, for example, How to write letters in Plain English.

Available free from: PO Box 3 New Mills High Peak SK22 4QP Tel: 01663 744409 Fax: 01663 747038 info@plainenglish.co.uk www.plainenglish.co.uk The Pragmatics Profile of Everyday Communication Skills in School-age Children

by Hazel Dewart and Susie Summers, published by: NFER-Nelson Publishing Darville House 2 Oxford Road East Windsor Berkshire SL4 1DF ‘This is a tool for describing in some detail a child or young person’s communication methods. Using it would provide a comprehensive account of how the child communicates and what limitations they experience in communicating.’

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Royal National Institute for Deaf People (RNID) The RNID (see Organisations) produces a number of useful leaflets (available on the website or through the post) both about deafness and hearing impairment and about the different communication requirements of people with hearing impairments. Some examples are: Communication services for deaf people: outlines the different types of communication support that might be needed by someone who is Deaf or hearing impaired.

Communicating with deaf people who lipread Working with a Sign Language Interpreter Working with a lipspeaker Working with a speech-to-text reporter Lipreading – practical information Learning British Sign Language Basic British Sign Language: 100 illustrations of sign.

See What I Mean: Guidelines to aid understanding of communication by people with severe and profound learning disabilities,

by Nicola Grove, published by: BILD Wolverhampton Road Kidderminster Worcestershire DY10 3PP

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A Lot To Say

Talking Mats: A low-tech framework to help people with communication difficulties express their views ‘Talking Mats is a framework which uses picture symbols to help people with severe communication difficulties communicate about particular issues relevant to them. It has potential for a wide range of people, both children and adults. It provides them with a means of expressing their views more easily and is an approach, which may help them to think about issues in a different way. The package includes a booklet explaining how to use the mats, as well as several pages of examples to get you started.

There is also a video accompanying the booklet, which shows how three people used the Talking Mats.’

The package can be purchased by sending a cheque for £23.00 made payable to ‘The University of Stirling’ to: AAC Research Unit Dept. of Psychology University of Stirling Stirling FK9 4LA Tel: 01786 467645 Fax: 01786 467641 joan.murphy@stir.ac.uk www.stir.ac.uk/Departments/ HumanSciences/Psychology/aac/TM.htm

Two Way Street: Training video and handbook about communicating with disabled children and young people This is an unusual pack, developed in consultation with disabled children and young people, and designed to improve professional practice in communicating and consulting.

The video provides an accessible teaching resource, combining practical information with a clear value base of participation and empowerment. The accompanying handbook (also available separately) gives further information and details of the most commonly used augmentative and alternative communication systems.

For more information contact Triangle on 01273 241015 info@triangle-services.co.uk To order the pack (video and handbook) priced £55 or the handbook separately, priced £9.50, contact: NSPCC National Training Centre 3 Gilmour Close Beaumont Leys Leicester LS4 1EZ Tel: 0116 234 7223 Fax: 0116 234 0464 sferrar@nspcc.org.uk

Useful resources

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Some examples of consulting with disabled children and young people, including those with communication impairments Ask Us! CD-ROM of a consultation exercise carried out with young disabled people.

Available (£5 + 50p) from: The Children’s Society Publishing Department Edward Rudolph House Margery Street London WC1X 0JL Tel: 020 7841 4415 Fax: 020 7841 4500 www.childrenssociety.org.uk Lewis, Maddy, 2001.

Learning to Listen: Consulting with children and young people with disabilities Save the Children.

Account of a consultation with children using a respite care centre in the London Borough of Hammersmith and Fulham.

Available from: Save the Children 17 Grove Lane London SE5 8RD Tel: 020 7703 5400

Marchant, Ruth et al, 1999.

Listening on all Channels: Consulting with disabled children Triangle.

Describes how children and young people with learning difficulties were consulted about their experiences of a residential respite care service.

Available from Triangle (see Organisations).

Morris, Jenny. 1998a.

Still Missing Vol 1.

The experiences of disabled children and young people living away from their families The Who Cares? Trust Kemp House 152-160 City Road London EC1V 2NP Tel: 020 7251 3117 This report presents the experiences of 30 disabled young people who spent most of their childhood away from their families.

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Morris, Jenny, 1999.

Space for Us: Finding out what disabled children and young people think about their placements London Borough of Newham Social Services Department.

26 disabled children and young people were visited and information gathered about their experiences using a questionnaire adapated from a similar exercise with non-disabled children. The interviews/visits were carried out by social workers, voluntary sector workers and one education officer. This report summarises the experiences of children and young people in their placements and the final chapter reflects on the experiences of some of the interviewers in setting up and carrying out the visits.

Prewett, Beth, 1999.

Short-term break, long-term benefit: Family based short term care for disabled children and adults JUSSR/Joseph Rowntree Foundation. Available from: Joseph Rowntree Foundation The Homestead 40 Water End York YO30 6WP Tel: 01904 629241 www.jrf.org.uk Consultation with children and teenagers using family-based short-term care services formed part of a wider piece of work.

Triangle, 1999.

Tomorrow I Go: What you told us about Dorset Road, Triangle.

Children and young people with learning difficulties, many of whom also had additional communication impairments, were consulted about their experiences of a residential respite services. The report presents the views of the young people, using their own words, signs, symbols and drawings and is addressed to the young people involved. Available from Triangle (see Organisations).

Triangle, 2000.

Quite like Home: Young people’s views about residential respite care in Kent, Triangle.

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Chapter 6 Communication: Legal and regulatory framework, and sources of funding

This section attempts to summarise what legislation and guidance is helpful in terms of meeting needs relating to communication impairments, and also to highlight possible sources of funding.

1 Under-16s Children Act 1989 Disabled children are ‘children in need’ and the Children Act requires that local authorities ‘safeguard and promote’ their ‘welfare’; ‘promote the upbringing of [children in need] by their families; and give them ‘the opportunity to lead lives which are as normal as possible’ (Section 17(1); and Schedule 2, Part 1, Para 6). Assessment of, and action to meet, communication needs is obviously an important part of carrying out these obligations. Assessment of, and provision to meet, communication needs should not just left to the child’s school to deal with but should also be part of any social work assessment under the Children Act. Guidance issued under the Children Act specifies that disabled children and young people are entitled to be given information and to be involved in decisions about how their needs are met: ‘Children and young people should be given the chance to exercise choice and their views should be taken seriously… the social worker should make efforts to communicate with the child to discover his real feelings. All children need to be given information and appropriate explanations so that they are in a position to develop views and make choices.

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If the child has complex needs or communication difficulties, arrangements must be made to establish his views… Even children with severe learning disabilities or very limited expressive language can communicate preferences if they are asked in the right way… No assumptions should be made about ‘categories’ of children with disabilities who cannot share in decision-making…’ (The Children Act 1989 Guidance and Regulations, Vol. 6 Children with Disabilities, Paras. 6.6, 6.7.)

Special Educational Needs Code of Practice ‘Communication and interaction’ are one of the four key areas of need identified by the Special Educational Needs Code of Practice (para. 7.52). The Code lists the kinds of assistance that children may need: ● Flexible teaching arrangements ● Help in acquiring, comprehending and using language ● Help in articulation ● Help in acquiring literacy skills ● Help in using augmentative and alternative means

of communication ● Help to use different means of communication confidently

and competently for a range of purposes, including formal situations ● Help in organising and co-ordinating oral and written language ● Support to compensate for the impact of a communication

difficulty on learning in English as an additional language ● Help in expressing, comprehending and using their own

language, where English is not the first language.

There are three stages of action to address special educational needs laid down by the Code of Practice and a child or young person’s communication needs should be

Communication: Legal and regulatory framework, and sources of funding

addressed under all of them. Under the first stage, School Action, extra or different help is provided by the school (for example if a child needed a computer to enable them to do their work, or help from an extra adult). The kind of help to be provided and the goals to be achieved may be written down in an Individual Education Plan. Communication could be one of the key areas covered by the IEP (Code of Practice, para. 5.51). The second stage, School Action Plus, is where the school identifies that help and advice from outside the school will be necessary, for example assessment of communication needs by a speech and language therapist.

The third stage is when a child or young person receives a statutory assessment of their special educational needs and a statement is written of what the needs are and how they will be met. Communication needs may be recorded under both Part 3 of the Statement, which covers the help which the local education authority will provide, and Part 4, which covers non-educational needs which may be met by health, social services or other agencies. However, the Code of Practice states that, ‘since communication is so fundamental in learning and progression, addressing speech and language impairment should normally be recorded as educational provision, unless there are exceptional reasons for not doing so.’ (emphasis in original, para. 8.49).

The Code of Practice emphasises the importance of enabling all children, including those with communication impairments, to be consulted about their views (paras, 3.3, 3.7) and that schools and local education authority staff should receive information and training on consulting with children with communication impairments (para. 3.22). Information should be provided in a form accessible to children and young people and enable them to participate in decisions (para. 3.23). The Code of Practice also says that it is important to ‘avoid making assumptions about levels of understanding’ and to provide whatever help might be required by children and young people to enable them to make their views known and participate in decisions which affect them (para. 3.25).

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Children and young people who have a Statement of Special Educational Needs are entitled to have the Statement reviewed annually, and should be able to participate in the review, including attending at least part of the meeting.

The review should look at the goals which will have been set, assess progress, and agree new goals for the following year.

The annual review in Year 9 must initiate a Transition Plan, and address what assistance will be required in the transition to adulthood. Statements of SEN continue until a young person either leaves school at the end of Year 11, or until they are 19 if they stay on at school. Annual reviews and Transition Plans should both address communication needs (see also Disabled Persons Act 1986 below).

The SEN Code of Practice is available free from Department of Education and Skills, 0845 6022260 or on the website www.dfes.gov.gsi.uk/sen Special Educational Needs and Disability Act 2001 This Act is designed to ensure that disabled children and young people are not discriminated against in education.

There are two main parts to it, one relating to children with a Statement of Special educational need, the second concerning disability discrimination in education.

1 From January 2002, a child with a statement of special educational needs must attend a mainstream school unless that is incompatible with the wishes of the child’s parents, or the efficient education of other children (Section 316).

Schools and LEAs are required to take reasonable steps to prevent that incompatibility between the placement of a child with a Statement in a mainstream school and the efficient education of other children (Section 316A).

Communication: Legal and regulatory framework, and sources of funding

2 The Disability Discrimination Act is extended to every aspect of education. It requires all educational bodies: ● Not to treat disabled children and young people less

favourably than those who are not disabled ● Make reasonable adjustments to ensure that

disabled children and young people are not put at a substantial disadvantage.

For schools and LEAs, the provision of additional aids and services is not covered by the duty to make reasonable adjustment, as these are covered under the Special Educational Needs Code of Practice (see above); neither is the physical adaptation of buildings. However, Section 28D requires schools and LEAs to increase access for disabled children and young people, and access is defined broadly to include not just physical access to buildings but also access to the curriculum and the provision of information.

The provisions of the SEN and Disability Act are summarised in National Children’s Bureau Highlights Nos. 186 and 187, available from: NCB 8 Wakley Street London EC1V 7QE

Tel: 020 7843 6000 Fax: 020 7278 9512 www.ncb.org.uk

Disability Discrimination Act 1995 Disabled children are covered under this piece of legislation, which gives them important rights to access to goods and services. See the next section, Sixteen and Over, for details.

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Speech and language therapy and specialist assessments of communication needs The need for a specialist assessment of communication needs will usually be identified for children through the implementation of the Special Educational Needs Code of Practice – the need for a referral to the local Speech and Language Therapy service may be identified at both the School Action Plus stage and during the statutory assessment of SEN. It may also be helpful to refer a child to a regional specialist communication centre, some of which are listed in the Useful Resources chapter of this booklet. The Foundation for Assistive Technology has a database of charitable and commercial organisations on their website – www.fastuk.org or contact: FAST Mary Marlborough Centre Windmill Road Headington Oxford OX3 7LD

Tel: 01865 227599 Fax: 01865 227294 info@fastuk.org

Funding of communication aids and assistance in schools The Department for Education and Skills announced a two-year programme of £10m to be made available from 2002 for Information and Communication Technology to help ‘pupils with communication difficulties access the curriculum.

It will also help ease the transition of pupils to employment or further and higher education. The project will be managed by the British Educational Communications and Technology Agency (BECTa) on behalf of the DfEE.’ BECTa Milburn Hill Road Science Park Coventry CV4 7JJ

Tel: 024 7641 6994 Fax: 024 7641 1418 becta@becta.org.uk www.becta.org.uk

Communication: Legal and regulatory framework, and sources of funding

2 Sixteen and over Special Educational Needs Code of Practice As mentioned above, the annual review of a Statement of special educational needs in Year 9 must initiate a Transition Plan, and address what assistance will be required in the transition to adulthood. Statements of SEN continue until a young person either leaves school at the end of Year 11, or until they are 19 if they stay on at school.

Annual reviews and Transition Plans should both address communication needs.

Disabled Persons Act 1986 At the same time as initiating a Transition Plan in Year 9, the local education authority must consult with the social services authority to ascertain whether the young person is likely to require support from social services when s/he leaves school. Annual reviews of the statement and transition planning should involve all relevant agencies, including any specialist support that is likely to be required around communication needs.

Special Educational Needs and Disability Act 2001 As mentioned above, this legislation extends the Disability Discrimination Act extends to every aspect of education, including further and higher education. It requires all educational bodies: â—? Not to treat young people less favourably than those who are

not disabled â—? Make reasonable adjustments to ensure that young people

are not put at a substantial disadvantage.

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Unlike the case with schools and local education authorities, the provision of additional aids and services and the physical adaptation to buildings are not exempted so these must be provided by further and higher education establishments. For advice and information about the application of this legislation contact the Disability Rights Commission, or SKILL: DRC Helpline Freepost MID 02164 Stratford-upon-Avon CV37 9BR Tel: 08457 622 633 Fax: 08457 778 878 Textphone: 08457 622 644 ddahelp@stra.sitel.co.uk www.drc-gb.org/drc

SKILL 336 Brixton Road London SW9 7AA Tel/textphone: 020 7274 0565 info@skill.org.uk www.skill.org.uk

Connexions Connexions is an initiative intended to increase ‘participation and attainment’ for all young people aged between 13 and 19 (up to 25 if they have learning difficulties or are disabled).

Young people should be: ● Provided with help and support to prepare for further

education, work and adult life ● Offered advice and guidance on learning and career options,

and access to broader personal development opportunities ● Helped to raise their aspirations and motivation ● Helped to identify and address potential problems ● Helped to overcome existing barriers to participation.

Communication needs, and plans to meet these needs, should be part of the assessment carried out and plans made

by Connexions Personal Advisors who should refer to specialist services and co-ordinate and chase up responses.

Communication: Legal and regulatory framework, and sources of funding

Children Leaving Care Act 2000; Regulations and Guidance.

The aim of this legislation is to prevent young people in local authority care from leaving care until they are prepared and ready to leave. Young people in care who qualify under the legislation are entitled to be given the support of a Personal Advisor who will assess their needs, draw up a Pathway Plan and assist them with their transition to adulthood. The support should continue at least until they are 21 and may continue up until the age of 25. Young people should be fully involved in the assessment and Pathway Plan. The guidance says that local authorities should provide communication support to all young people who require it (Chapter 4, para 25).

Community Care legislation If someone appears to be in need of community care services then the local authority must carry out an assessment of their needs and take this assessment into account when deciding what response to make (NHS and Community Care Act 1990). Recently issued guidance makes it clear that communication needs must be covered in community care assessments (Department of Health: Fair Access to Care Services Policy and Practice Guidance, 2002). Needs can be met by either providing services or by making a cash payment to enable the person to purchase the assistance they require (Community Care (Direct Payments) Act 1996). The Carers and Disabled Children Act 2000 extended direct payments to 16 and 17-year-olds. If someone receives a total of ÂŁ200 worth of local authority services or direct payments per week, they may also apply to the Independent Living Fund for further cash payments to meet additional needs (which could also include equipment costs).

Independent Living Fund PO Box 183 Nottingham NG8 3RD .

Tel: 0115 942 8191

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Many areas have Personal Assistance Support Schemes (often called independent living schemes/centres) which help people to use direct payments and ILF grants. Contact: National Centre for Independent Living 250 Kennington Lane London SE1 5RD Tel: 020 7587 1663 Fax: 020 7582 2469 info@ncil.org.uk Guidance (Community Equipment Services: HSC2001/008: LAC(2001)13) has also been issued on the provision of Community Equipment (which includes communication aids), making more funding available and requiring the establishment of an integrated (ie health and social services) equipment service, a lead officer in each area with responsibility for planning to meet community equipment needs, and the drawing up of joint action plans.

Speech and language therapy and specialist assessments of communication needs Access to speech and language therapy for over sixteen-yearolds is through referral to local or regional NHS speech and language therapy service. A need for such a referral may be identified by a social worker in a community care assessment, or an assessment made by a Connexions or Leaving Care Personal Advisor. GPs can also make referrals. There are also private speech and language therapists: the Association of Speech and Language Therapists in Independent Practice has a database of those who are members of the Royal College of Speech and Language Therapists: ASLTIP Coleheath Bottom Speen Princes Risborough Bucks HP27 0SZ

Tel: 0870 241 3357 (answerphone) Fax: 01494 488590 asltip@awdry.demon.co.uk www.asltip.co.uk

Communication: Legal and regulatory framework, and sources of funding

Assessments may also be made at centres run by charitable organisations or commercial companies: the Foundation for Assistive Technology has a database on their website – www.fastuk.org or contact: FAST Mary Marlborough Centre Windmill Road Headington Oxford OX3 7LD

Tel: 01865 227599 Fax: 01865 227294 info@fastuk.org

Disabled Students’ Allowances Local education authorities can make grants to disabled students. These can come under one of three headings: Non-medical personal helper allowance; Equipment allowance; General allowance. Communication needs can be funded under these allowances.

Charitable funding to meet communication needs As with children, there are a variety of sources of charitable funding which might be available to meet communication needs. SKILL (National Bureau for Students with Disabilities) is a good source of information about possible sources: SKILL 336 Brixton Road London SW9 7AA

Tel/textphone: 020 7274 0565 info@skill.org.uk www.skill.org.uk

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Disability Discrimination Act 1995 Since 1996 it has been unlawful for a business or organisation providing goods or services to treat disabled people less favourably than other people for a reason related to their disability. Since 1999 they have had to make reasonable adjustments for disabled people, such as providing extra help or making changes to the way they provide their services (this includes communication issues). From 2004 they may have to make reasonable adjustments to the physical features of their premises to overcome physical barriers to access.

Also it is unlawful for an employer (employing more than 15 people) to discriminate against someone on the grounds of their impairment, and they are required to make ‘reasonable adjustments’ to premises, equipment and/or ways of working to address needs relating to impairment (unless they can give a ‘material and substantial’ reason).

The Disability Rights Commission provides information and advice about the implementation of the legislation.

DRC Helpline Freepost MID 02164 Stratford-upon-Avon CV37 9BR

Tel: 08457 622 633 Fax: 08457 778 878 Textphone: 08457 622 644 ddahelp@stra.sitel.co.uk www.drc-gb.org/drc

Access to Work Access to Work is a programme, run by the Department of Work and Pensions, which provides a range of assistance to enable disabled people to work. This includes assistance with communication and can take the form of: a person to help with communication (such as someone to interpret the disabled person’s speech, a sign language interpreter, or someone to assist in using equipment); and/or equipment (such as electronic communication aids, computers and computer software, etc). The assistance is not means-tested and is available through the local Employment Service.

Communication: Legal and regulatory framework, and sources of funding

The Human Rights Act 1998 Underpinning all the legislation, guidance and provision of funding is the Human Rights Act 1998, which requires central and local government, and agencies acting on their behalf, to ensure that certain human rights are not contravened. These include: Article 3. Freedom from torture, inhuman or degrading treatment. If a child or young person experiences a denial of communication, or is only enabled to communicate basic needs, this is arguably inhuman and degrading treatment.

Article 10. Freedom of expression. This means that people should not be blocked from holding and expressing their own views, or from receiving information.

Article 11. Freedom of assembly and association. This means getting together with other people – whether this is for leisure, learning, work, sharing ideas and plans, or campaigning and lobbying. If communication needs are not properly supported then this human right is blocked.

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