Including all children: finding out about the experiences of children with communication and/or...

CHILDREN & SOCIETY VOLUME 17 (2003) pp. 337–348Published online 3 January 2003 in Wiley InterScience (www.interscience.wiley.com). DOI: 10.1002/CHI.754

Including All Children: Finding OutAbout the Experiences of Children withCommunication and/or CognitiveImpairments

Practitioners and researchers have made progress, in recent years, in

seeking the views of children and young people. Less progress has

been made in seeking the views of young people with significant

communication and/or cognitive impairments. Drawing on the

experience of three research projects and one Best Value review, this

article details the lessons learnt, and action required, in order to find

out about the experiences of this important group of children and

young people. Copyright # 2003 John Wiley & Sons, Ltd.

Children Act regulations and recent governmentinitiatives such as Quality Protects make clear thatthose working with children should ‘ascertain their

wishes and feelings’ and take these into account when makingdecisions and providing services. Children and young peoplethemselves confirm how important it is to be consulted andlistened to (Hill, 1997a; Thomas and O’Kane, 1998; Shaw, 1998;Morris, 2000). Tools have been developed for doing assess-ments and reviews, and planning services, in ways whichinvolve children (Wheal and Sinclair, 1995; Children’s RightsOffice/Save the Children, 1997; Children’s Society, 1997;Dorbar/Hampshire County Council, 2000). There has beenless progress in involving children who have communicationand/or cognitive impairments (Social Services Inspectorate,1998; Morris, 1998b; Abbott and others, 2001).

Researchers have also changed their methodologies in order togather children’s views (Alderson, 1995; Hill, 1997b; Hurley,1998; Clark and Moss, 2001). Sometimes, children and youngpeople have become researchers themselves (Kirby, 1999;Alderson, 1999).

Children Act regulations make clear that the requirement toinvolve, listen to and consult with children covers disabledchildren, including those with significant communicationand/or cognitive impairment. Some local authorities are tryinghard to seek the views of disabled children (Save the Children/

Copyright # 2003 John Wiley & Sons, Ltd.

Jenny Morris

Correspondence to: Jenny Morris,

101 Calabria Road, London N5

1HX. E-mail:

[email protected]

London Borough of Hammersmith and Fulham, 2001; Essex Social Services/TheatreResource, 2001; see also Griffiths and others, 1999). Triangle, which works with childrenwith complex needs, has done pioneering work, helping local authorities to consult withthis group of children (Marchant and others, 1999; Triangle, 1999, 2000; Triangle/NSPCC,2001). In the research field, too, progress has been made. Some researchers includedisabled children in researching children’s experiences generally (Thomas and O’Kane,1999). Others focus specifically on disabled children, identifying how research metho-dologies need to be changed (Beresford, 1997; Ward, 1998; Stalker and Connors, 1999;Watson and Priestley, 2000; Davis and others, 2001). Some researchers have involveddisabled children and young people in advising, or doing, the research (Ash and others,1997; Educable, 2000; Children’s Society, 2001).

I have been involved in four projects which sought the views of disabled children andyoung people, including those with significant communication and/or cognitiveimpairments: three were research projects (Morris, 1998a,b, 2001; Abbott and others,2000, 2001) and one was part of a local authority’s Best Value review of placements forlooked after children (Morris, 1999). Some of the lessons learnt about how to includedisabled children and young people both as research participants and as advisors to aresearch project, were written up in a report published in 1998 (Morris, 1998c). This articledraws on all four projects to examine the specific issues around involving children andyoung people with communication and/or cognitive impairments.

Involvement of disabled young people in research Reference Groups

The three research projects each had a Reference Group of disabled young people withsimilar experiences to the research participants: of spending most of their childhood awayfrom their families; of social exclusion; of being at a residential special school. TheseReference Groups were involved at three key stages:

* deciding the information to be gathered, designing the information schedule andadvising how to gather information directly from disabled children and young people;

* commenting on initial analysis of information gathered and identifying key messages;* making suggestions for dissemination of the research.

Each member of these Reference Groups had their own access needs which had to be metin order for them to fully participate in the process. The facilitation process started longbefore the actual meetings. The young people were unlikely to attend meetings if we hadjust sent out letters and agendas in the normal way. For example:

* A printed letter may not be accessible to the young person* Letters may be opened by adults (parents, teachers, care staff) who make decisions on

behalf the young person* No easy access to paper, envelopes, stamps, postbox, telephone, e-mail* The young person may rely on others to organise transport, personal assistance and/or

communication facilitation* Other people may arrange something else to happen on the same day as the meeting,

without realising that the young person wanted to come to the meeting

338 Jenny Morris

Copyright # 2003 John Wiley & Sons, Ltd. CHILDREN & SOCIETY Vol. 17, 337–348 (2003)

* Other people may decide on behalf of the young person that they cannot come to themeeting: for example, staff in one residential home said that a young woman wouldn’tbe able to come to the meeting because she ‘will only just have come back from aweekend home with her family’.

The following actions made it more likely that people came to meetings:

* Making sure when informing people of meeting dates and venues that communicationmethods are chosen to suit each individual: for example, sending a letter on tape, inlarge print/Braille, video, using typetalk, text messaging, e-mail, the telephone, plainEnglish, pictures

* When relying on an adult to help a young person respond, trying to ensure that thisadult acts as a channel of communication, rather than on their own opinion aboutwhether the young person can come to the meeting and what help they will require

* Giving plenty of notice of the date of the meeting but contacting the young person closeto the date of the meeting in order to confirm that everything is OK

* Making clear that any costs incurred in attending the meeting will be reimbursed,including transport, personal assistance, communication facilitation. Making clear howto claim these expenses and making it easy

* Asking the young person what help they need to come to, and participate in, the meeting.Offering to organise transport, personal assistance and communication facilitation

* Paying the young people for coming to the meeting and asking each person what is thebest way to pay them—in cash, cheque, vouchers. Making it easy to claim the fee.

Young disabled people often have little control over their lives and other people makedecisions for them: this is even more likely when the person has communication and/orcognitive impairments (Morris, 2001). The barriers they experience to becoming involvedin a Reference Group often concern things which most of us take for granted (havingenvelopes and stamps and access to a postbox for example).

Attention to detail is vital. One young man, for example, lived in a hospital and stafforganised transport and assistance when he attended the first three meetings of theReference Group. On the fourth occasion, however, the key staff member was on holiday.We had not made contact with the young man to check that everything was going smoothlyand consequently did not pick up the problem and he did not attend the meeting.

Paying attention to detail was also vital to enable young people to participate in meetings.This included the physical environment of the venues, the assistance available and theway meetings were run. The experience of the first research project which involved aReference Group of young disabled people resulted in a Checklist covering both theseissues (Morris, 1998c, p. 65) but we continued to make mistakes. For example, youngpeople with communication impairments suggested we should spend more timediscussing things in pairs or threes.

Seeking the views of disabled children and young people abouttheir experiences

All four of the projects aimed to find out the views of disabled children and young people,including those with significant communication and/or cognitive impairments. None of

Experiences of Disabled Children 339


the projects was able to use the type of ethnographic fieldwork carried out by, for example,John Davis who spent five months in a special school (Davis and others, 2001). We couldonly visit children and young people for short periods of time, at most spending a daywith them, although we often visited more than once. We therefore maximised ourchances of gaining information directly from the children and young people by ensuringthat we were properly prepared.

We organised training days and, although most of us had experience of this kind of work,we all benefited from exploring together how we could maximise communication. Threeof the projects also held follow-up days to talk about the experiences of doing the work.Looking back over the four projects, there were a number of learning points.

The importance of the social model of disability

We had a clear understanding of the social model of disability and the training dayshelped to focus on its application to communication. We reminded ourselves of theimportance of separating out impairment and disability. The disabled people’s movementin Britain does not use the term ‘disability’ to mean impairment but to refer to thedisabling barriers of prejudice, discrimination and social exclusion.

This approach enabled us to separate out the child’s communication needs relating to theirimpairment (for example for sign language interpretation, a piece of equipment, or forpeople to understand their speech or behaviour) from the disabling barriers created byothers (negative attitudes, lack of equipment or relevant expertise).

We found it particularly helpful to separate out impairment and disabling barriers when wesought contact with potential research participants. When negotiating the involvement ofchildren and young people in the research, we dealt with adults acting as gatekeepers. Thisrole is important to ensure that we, as unknown adults, did not cause the child any harm.However, it was common to be told—when first making contact with a child’s parent,school, or residential home—‘You won’t get anything out of him’; ‘He can’t communicateso you won’t be able to interview him’. These comments do not give us any informationabout the child’s communication needs but they tell us that there are attitudinal barriers inthe way of both our need for information and also, probably, the child’s communicationpotential. In these instances, it was the adult’s attitude that had to be tackled first,particularly in order to find out what the child’s communication needs were.

We sometimes found significant gate-keeping barriers even when those setting up the visitto the child were social workers carrying out their statutory duty to review a placement.The following attempt by a social worker to visit a boy at a residential special school is oneexample:

I was informed that Abraham* did not communicate in any formal way, was non-verbal, hadchallenging and dangerous behaviour patterns that put others at risk. My visit would upsethim (he will think I have gone there to ‘take his teeth out or something’—he may rush to hisroom and have diarrhoea—he did not like strangers around and may provide them withmanagement problems) . . . . I requested to visit out of school time. I was told that since there isa ‘52 week curriculum’ there are no school breaks as such. I requested to visit after school and

340 Jenny Morris


was informed that at 4.00 there is a routine that would be upset by the presence of a strangerand that no visits were allowed after 6.00 for ‘reasons of protection’.

On the other hand, sometimes we were told: ‘He uses BSL’ or ‘She uses a Liberator’ or ‘Hedoesn’t have speech but he does have ways of indicating yes and no’. These useful piecesof information told us what skills we needed in order to communicate with the childconcerned.

Consulting with young disabled people about the information to be gathered

The research projects each used an Information Schedule, developed in consultation withReference Groups of young disabled people who had similar experiences to the researchparticipants. This helped us to cover issues of importance to the children and youngpeople and also meant that we were more likely to ask the questions in ways that weremeaningful to them.

The Best Value review had to adapt a questionnaire intended for looked after children as itwas not suited to disabled children. For example:

* Asking whether a child feels able to ‘talk’ at their reviews was not an appropriatemeasure of involvement for children who do not use speech.

* Questions about independence were all about doing things for yourself, and this is aninappropriate measure of independence for children and young people who usepersonal assistance or equipment for daily living activities.

There were also important issues in terms of disabled children’s welfare which were notcovered in the questionnaire, for example:

* Whether carers understood how the child or young person communicated* How the child or young person felt about the way carers provided personal assistance.

Gaining consent

The Reference Groups helped us understand what information children and young peoplewould want in order to decide whether to participate in the research. For example, theReference Group advising the research on disabled children and residential schools saidthat children would want to know:

* What questions am I going to be asked?* Will anything I say get back to staff or my parents?* What’s the point of doing the research? Is it going to change anything?* Why and how have I been picked?* What information do you already know about me and who gave it to you?* What skills/experience have you got?* Will I have a choice about where and when the interview happens?* Will I have a chance to have someone with me? Will I be able to choose who this

person is?* Can I say I don’t want to answer any of the questions, or stop the interview at any time?



The Reference Group also felt that participants would like to know that young disabledpeople had been consulted about how the research should be done, and that thisconsultation included those who do not use speech.

Each of the projects included gathering information from children whose level of cognitiveimpairment meant a dialogue with them was not an appropriate method of gainingconsent. Instead we developed other methods of gaining their consent to visit with them.The main way of doing this was to ask someone who knew them well how they indicatedthat they were happy or unhappy with a situation or person. We were then careful to acton this information when visiting with them. However, it is important to recognise theethical limits of this kind of situation. These children and young people may have‘consented’ to a researcher being with them but this was not consent to the informationwe gathered about them being used in the research. We had to rely, therefore, on seekingthe consent of an adult who firstly, was entitled to give consent on behalf of the child oryoung person, and secondly, who, we felt, would protect their interests.

Setting up interviews

When setting up interviews, we addressed the issues of privacy, finding a time whichwould suit the young person, assuring them of confidentiality, and being clear about whatwe would do if anyone disclosed an experience of abuse (see Morris, 1998c). In terms ofaddressing communication needs, we did not need information about diagnosis orimpairment but instead about what would assist communication.

We experienced three main barriers to identifying and meeting young people’scommunication needs:

* the person with whom we were negotiating access to the young person did not haveenough knowledge of their communication needs: this could sometimes be overcomeby making contact with someone who knew the young person better

* we were told that there was no point in our trying to include the young person in theresearch as, for example, ‘he won’t be able to tell you anything’

* the person with whom we were in contact very much wanted a child or young person tobe part of the research and underestimated how much assistance would be required tomake this possible—often because they assumed we would be happy to just askquestions of a parent or member of staff rather than seek information from the youngperson themselves.

The key learning points from all of these situations was the importance of asking lots ofquestions about someone’s communication needs, being persistent, and being prepared tofind, when we arrived, that the information was wrong or incomplete. An initial visit wasoften essential to confirm what we had been told over the telephone, and to find out, fromthe children themselves, what we needed to do to facilitate communication.

While interviews were not an appropriate method for gathering information aboutchildren and young people who had significant cognitive impairments (see below), we diduse this method with a number of children and young people who had significantcommunication impairments. In one example, which is fully described in Morris (1998c),

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a number of factors created a situation where a girl with no speech could be fully involvedin both consenting to being involved and in telling us about her experiences of residentialschool. These factors included: the researcher’s confidence with ‘total communication’; theteachers’ respect for the girl’s right and ability to choose whether to be involved and to‘speak’ for herself; and the time taken to check out her preferred method of com-munication and that the researcher understood her. One important feature of this girl’scommunication methods was that she did not use a smile to indicate ‘Yes’ but instead usedbody language, a switch or Rebus book. Unfortunately, a number of children and youngpeople interviewed in these research projects did not have appropriate ways of indicating‘Yes’ if they were communicating about negative experiences.

Apart from taking time, at the beginning of an interview, to check out issues aroundcommunication, we also made sure that the child or young person knew they could stopthe interview at any point. Sometimes we suggested they practised stopping the interviewso they and we would feel confident that this could be done if they so wished.

The experiences of setting up interviews with children and young people who hadcommunication impairments illustrated the importance of details such as:

* venue (whether it was comfortable, quiet)* timing (allowing more time, ensuring that the time suited the young person)* identifying any need for a facilitator and allowing time to organise this* checking that, if the young person used a communication aid, it was available and in

working order.

We also found it important not to introduce any new system of communication, such as apackage for carrying out reviews or assessments, without checking out first how it mightfit in with a child or young person’s existing system.

Asking questions

We also learnt a lot about how interviews should be conducted when a child or youngperson has a communication impairment. This included being very careful about thelanguage used (avoiding figures of speech for example) and how we asked the questions(such as avoiding using double negatives). We also learnt about how we should conductourselves and the following checklist is part of a longer list included in a guide written, inconsultation with young disabled people, for social workers, and others working withyoung people with communication impairments (Morris, 2002).

—don’t panic if you feel disempowered by uncertainty or unfamiliarity or your ownfeelings of inadequacy

—don’t react to your feelings of disempowerment by trying to take more control of thesituation

—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 havefinished what they have to say, and 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 eyecontact with the young person and are picking up on any facial expressions or bodylanguage

—if you think it’s possible to guess the end of a sentence ask if it’s OK to do this.Sometimes people welcome this because it speeds up conversation, sometimes theyhave too many experiences of people getting it wrong

—don’t rely on your tone of voice to convey meaning if you are interviewing someonewith a hearing impairment or autistic spectrum disorder

—don’t rely on your body language or facial expression to convey meaning if you areinterviewing someone with a visual impairment or autistic spectrum disorder.

We found it can be difficult to always remember the impact of impairment. Someone withno visual impairment, for example, picks up messages conveyed by facial expressionwithout even thinking about it. While an interviewer may know that the young person theyare talking to has a visual impairment it is sometimes hard to keep being aware of how thismight affect their interaction. It can be easy to underestimate or misinterpret someone’sability to understand or cooperate. We found it important to keep asking ourselves howsomeone’s impairment may affect what they pick up or how they respond—rather thantheir ability to understand or their wish to cooperate. Again, this demonstrates theimportance of the social model of disability—the clear separating out of impairment fromdisabling barriers helps address needs relating to both factors.

Adapting the research tool to suit the children concerned

It is common for children who have significant communication and/or cognitiveimpairments to be excluded from research because traditional research tools such asquestionnaires and interviews are inappropriate methods to gather information fromthem. This is sometimes the result of an explicit decision, as for example when oneresearch project concerning people with ‘intellectual disabilities from South Asiancommunities’ only included those who ‘were judged to have sufficient levels ofcommunicative skills to take part in the interviews’ (Azmi and others, 1997, p. 252).More often, the exclusion is implicit and happens in spite of the researchers’ intentions tobe inclusive. Claire O’Kane and Nigel Thomas, for example, found that the ‘participatorytechniques’ they used to gain children’s views about decision-making required a certainlevel of conceptual or physical ability and they were unable to include children who had‘severe learning difficulties’ (O’Kane, 1999, p. 155).

We have learnt that, unless there is a specific focus on including children and youngpeople with significant communication and/or cognitive impairments, they willinevitably be excluded. An important part of this focus must be adapting the researchtools to suit each child or young person.

Each research project used an Information Schedule with questions under a series ofheadings. We did not assume, however, that the only way to gather the information was toask each child the relevant questions. Instead, in a number of cases, the questions wereused as a way of assessing the child’s experience, using a number of sources of information.For example, one of the questions on the Information Schedule for the research on socialexclusion was: ‘Is there someone who you feel will always listen to you, if you’ve got

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something important that you want to talk about?’ Some of the young people included inthe research could not be asked a direct question because of their level of cognitiveimpairment. On the other hand, we did not want to rely on, say, a parent or keyworker tobe a proxy for the young person in answering this question; we wanted to get as close aspossible to their actual experience. We also recognised that the question itself might beinappropriately worded and focused instead on the meaning behind the question.

We therefore gathered information from people who were in daily contact with the youngperson—parents, teachers, keyworkers, friends and siblings. We also spent time with theyoung person in more than one setting. We did not rely on any one person to tell us theanswer to this question although we paid more attention to the views of anyone whoclearly liked/loved and respected the child or young person. Having written up notes ofinterviews with those who knew them well and notes of time spent with them—we askedourselves the question: ‘Does this young person have someone in their lives who theycould rely on to understand and listen to them, if they had some important experience orfeelings they wanted to share?’ Information gathered under other parts of the InformationSchedule was also important in answering this question, such as ‘How well are theircommunication needs met, how much privacy do they have?’ and so on.

‘Being with’ a child or young person as a method of understanding their experiences

This brings us to what we have called ‘being with’ as a method of gathering informationabout children and young people’s experiences. Sometimes this took the form ofstraightforward observation of what was going on in a situation; other times it involvedjoining in an activity, such as having a meal, or accompanying them on an outing. Thismethod was most informative when we were able to experience a range of settings with theyoung people. For example, Mark was visited at boarding school and then a few monthslater at a day centre which he attended, having left school. The school staff told us that Markdid not communicate at all and that there was no way of knowing what he was feeling. Ourobservation of him at school seemed to confirm this. In contrast, at the day centre there wasa high amount of interaction between Mark, the staff and other disabled young people,particularly between Mark and his keyworker. He also expressed his delight at going iceskating. The levels of communication and interaction with others displayed by Mark, oncehe started attending the day centre, were far higher than his parents had previouslyexperienced. This, and similar examples involving other young people, led us to concludethat some young people with high levels of support needs experience an extreme form ofsocial exclusion in that their needs and abilities to communicate are not recognised. ‘Beingwith’ them was the appropriate method for gathering information about their experiencesrather than the more traditional research methods.

Writing up the experience of sharing the same space and time as a child or young personwith significant cognitive impairments was also a way of ensuring that their experienceswere part of the research project or Best Value review. One example concerns a 14-year-oldboy who was at a residential special school. The research report set the scene for thedescription of what it was like spending time with him:

Howard’s school is in the countryside, occupying a large site with a number of hostels, ahospital block, school, staff housing and other large buildings. Each time the researcher visitedHoward the grounds seemed deserted and it was difficult to believe that there were over 200



children living there. The researcher described her visit to the hostel where Howard lives. ’Itlooks like an air-raid shelter from the outside. We go into a dark hall that smells like a hospital.There is a staff office directly in front: all glassed in and lots of filing cabinets and noticeboards.We hang up our wet coats: Howard’s in one cupboard and mine is very definitely put into theseparate staff cupboard.’

‘We go into what is apparently the lounge. It is stunningly bare. The furniture is grey plasticsofas and chairs, some in pieces. There is a TV and there are three torn up magazines on thetable. One wall is completely covered with rows of small wooden cupboards, which it seemsare all empty. There are some framed posters of animals up high on the walls which otherwiseare completely bare. There is a plastic wipe container with dusty plastic flowers tied to a pipeup high. There is no-one here, it is silent . . . . I sit on one of the sofas. I notice over my visits thatno member of staff sits on the sofas and I begin to feel I have broken a rule but I carry on sittingon the sofas’ (Morris, 1998c, p. 7).

Even when a child or young person can participate in an interview, spending time withthem when they are engaged in other activities often opens up more opportunities forfinding out about their views and experiences. As Ruth Marchant and her colleagues fromTriangle found, when finding out about children’s views of a residential respite centre:

Some of the best communication took place where the young people did other things at the sametime as communicating: for example, eating, drinking, playing, walking, being driven, watchingTV, listening to music, playing computer games, drawing’ (Marchant and others, 1999).

Conclusion

There is still a long way to go before social services practitioners consistently andcomprehensively ‘ascertain the wishes and feelings’ of children with communication and/or cognitive impairments. Researchers too are still learning how to be fully inclusive whenexamining the experiences of children. The two groups have a lot to learn from each otherand it is important that we share the detail of what works and what does not.

If we assume that children and young people are unaffected by physical, sensory orcognitive impairments, assessments and reviews, and research, will inevitably alwaysexclude important experiences. None of us wish to do this so it is important to confront thebarriers we experience to including disabled children in order that we can at least begin toaddress them. All four of the projects discussed in this article found that the mostimportant starting point is to assume that all children and young people—whatever theircommunication and/or cognitive impairment—have something to communicate. It is upto us to find ways of understanding their views and experiences.

Acknowledgements

I am indebted to the following young disabled people who were involved in threeReference Groups: Carl Aaronson, Ron Beard, April Bird, Leon Christie, Omar Dadi, JulietFraser, Cathy Gibson, Ann-Marie Mitchison, Kerry Parsons, Daniel Stivey, JimmyTelesford, Roy Thompson, Helen Tilbury, Adam Walker and Holly Williams.

Thanks also to those involved in carrying out interviews and visits: David Abbott, NasaBegum, Karen Castle, Maxime Cole, Merry Cross, Susan Hemmings, Zak Hussein,

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Margaret Kennedy, Perpetua Kirby, Ruth Marchant, Pippa Murray, Simon Stevens, KimTserkezie and Rosalie Wilkins.

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Contributor’s details

Dr Jenny Morris is a freelance researcher.

Endnote

*In this piece of work, as in the others referred to in this article, the children and young people’sanonymity was preserved and all names used are pseudonyms.

348 Jenny Morris


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