July 2001 - Ref 741
Consulting with disabled children and young people
Recent legislation and guidance across education, health, leisure
and social services strengthens the expectation that professionals
will consult with children and young people about decisions that
affect them, including disabled children and young people. The 'Ask
Us' project (led by The Children's Society) used a multi-media
approach to involve disabled children and young people in influencing
policy development on Quality Protects. 'Two Way Street' (led by
Triangle and NSPCC) produced a training video for practitioners to
build confidence and skills in communicating with disabled children
who do not use speech or language. An overview of the two projects
demonstrates that:
- Disabled children and young people had strong views about the
society they live in, how they are treated, services they receive,
their education, health and leisure. They wanted to be respected and
to have a say in things that affect them.

- Disabled children and young people wanted resources, equipment and
support so they could access everyday things which most children take
for granted:
- going out with friends;
- belonging to youth and sports clubs;
- going to pubs and clubs;
- going to the local park.
- The children and young people involved in 'Two Way Street' wanted
to challenge the negative assumptions they felt that many
professionals have about disabled children and young people. They felt
that too often, the focus is on young people's impairments and not on
the real barrier: adults who do not listen and do not try to
communicate 'on all channels'.

- The experience of those involved in the projects was that all
children can be included and enabled to express their wishes and
feelings. However, this needed sensitivity and openness to different
ways of communicating, and also required time and a willingness to try
a range of approaches.

- Multi-media tools provided an effective way to consult with
disabled children and young people about a range of issues, including
government policy. Both young people and staff who were new to the
technology learned the necessary skills quickly.

- Some disabled children rely on communication aids and/or people who
know how they communicate. But these aids and people are not always
available in all parts of their life (e.g. leisure time as well as at
school) or when they move or leave school. Young people in the
projects felt this was against their human right to express their
views.

Background
Listening to and involving children is a key principle across a
wide range of initiatives, policy and practice guidance, including:
- Revised Code of Practice for children with Special Educational
Needs (SEN);
- Quality Protects programme in England, Children First in Wales
and the forthcoming Strategic Framework for Children's Services in
Scotland;
- Valuing People (White Paper on learning disability);
- SEN Programme of Action;
- Sure Start Partnerships;
- Children's Fund;
- Connexions;
- NHS Plan;
- Framework for Assessment of Children in Need and their Families.
Consulting with children and young people has also been promoted in
good practice guides across a range of government initiatives,
including Early Years Child Care and Development Partnerships. The
importance of designing policies around the needs and priorities of
young people has also been recognised (it is a key strategic issue for
the Children and Young People's Unit).
Recent legislation and guidance across education, health and social
services has strengthened the expectation that professionals will
consult with children and young people about issues that affect them.
Yet previous research has suggested that many professionals fail to
consult with or involve disabled children, even where statutory duties
require authorities to ascertain children's wishes and feelings, as
in The Children Act 1989, The Children (Northern Ireland) Order 1995,
and The Children (Scotland) Act 1995. In addition, disabled children
and young people are often excluded from wider consultations around
local policy and planning, their neighbourhoods and communities.
'Ask Us' and 'Two Way Street' set out to address some of these
issues through supporting disabled children and young people to have
their say in policy, and through producing a training video for
practitioners on communication.
'Ask Us' : a multi-media consultation on children's services
In 1999, The Children's Society was approached to find a way to
enable disabled children and young people to influence Quality
Protects, the Government's programme for transforming children's
services in England. Importantly, the starting point of the
consultation was the wishes and feelings of groups of disabled young
people, rather than their views on proposals already worked out by
adults. The result was 'Ask Us' , a model of multi-media
consultation that involved over 200 disabled children and young people
across England, aged between 4 and 24 years old. Many of the children
and young people who participated have labels of severe learning
disabilities and challenging behaviour. Some do not use speech or sign
language; they express their wishes and feelings in other ways.
What did the consultation process involve?
The consultation happened over 3 months in the summer to allow
strong relationships to build between young people and staff. Children
and young people were consulted around five questions: What do you
enjoy? What do you want more of? What are your experiences of
consultation? What are your experiences of participation and of
services? What do you understand by inclusion? Audio-tapes, videos and
digital cameras were used to record the young people's work before
transferring it onto CD-ROM using Powerpoint software.
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Box 1: Examples of the 'Ask Us' projects
St. Christopher's Solihull: three young people led their own
research on the usefulness of helplines in local authority complaints
leaflets. They got some training on basic research methods, and led
the research at all stages. In the same project, four disabled
children and five of their non-disabled friends did an access audit on
eight local parks over one weekend. They called it "Can we go to
the park, mom?" and used videos, digital cameras and pictures to
record the results. The audit highlighted the inequalities experienced
by disabled children in accessing everyday opportunities and local
facilities.
Glenfield and Melton: workers used the resources to take children
and young people places - a barge trip, the local swimming pool, the
beach and the park - and record their responses when they were there.
Part of the money was used to pay a professional to adapt young
people's communication aids so they could take part more fully. This
was 'on the spot' consultation. It enabled children who do not use
speech or language to have their views included on the CD-ROM.
Space: young people helped to organise an Inclusion Festival over 2
days. They invited all the children from the local respite unit as
well as children from local special schools. The Festival offered a
wide choice of media and activities, such as archery, art, music,
dancing, song-writing, camping and a graffiti wall. Two young
researchers were 'roving reporters', asking other young people at
the festival for their views about inclusion.
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Six projects run by the Children's Society were involved (see Box
1). Each was provided with a budget to allow flexibility. This
resulted in a dynamic mix of processes, such as:
- Young people as researchers working on specific topics;
- Young people asking other young people for their views;
- Creative workshops with drama, animation, art and music;
- Song-writing and using recording studios;
- Puppetry;
- Video diaries;
- Discussions led by young people;
- Leisure activities and visits.
Lessons from 'Ask Us'
- It was important to give each project resources to use flexibly
and creatively.
- Young people were often involved in all stages of the
consultation.
- Given appropriate tools and support, all children, including
those who were labelled as having 'severe or profound disabilities'
and 'challenging behaviour', were able to express their views,
wishes and feelings.
- Using the multi-media approach has enabled the children and
young people to get their views across to a wider number of people,
nationally and in the areas they live.
- The approach meant children and young people living away from
their families could be included as well as those living in their own
communities.
- Young disabled people who were paid as researchers described
feeling valued and responsible; they enjoyed the work and felt they
benefited from meeting other disabled people and hearing their
stories.
- Careful monitoring of children's willingness to be involved was
needed where the difficulties of getting informed consent from some
children had to be balanced with not excluding them from taking part.
What disabled children and young people say in "Ask Us"
Children and young people identified a wide range of issues that
were important to them: leisure, friendships, social workers, review
meetings, growing up, bullying, discrimination and respect. A common
theme was that disabled children and young people enjoyed the same
things as other children and young people of a similar age. Yet they
were often denied these experiences through a lack of support,
resources and access, and through other people's attitudes.
Other important messages were:
- Disabled children and young people wanted adults to ask and
wanted adults to listen. They wanted to have a say in things which
affect them. They worried when they did not understand what was
happening.
- Disabled children and young people regularly experienced
bullying, exclusion and discrimination. They wanted to be treated with
respect. They wanted to be part of their communities.
- Some disabled children relied on communication aids and/or
people who know how they communicate. But these aids and people were
not always available in all parts of their life (e.g. leisure time as
well as at school) or when they moved or left school. Young people
felt this denied them their right to speak.
'Two Way Street': training for practitioners
'Two Way Street' is a unique training video on communication for
all professionals who encounter children and young people through
their work. The video shows children and young people (aged 3 to 19
years old) communicating with each other and with adults in different
ways, such as through behaviour, sign, symbols, body language, eye
pointing, facial expression, gesture, play, use of art, objects of
reference, speech, vocalisation and physical movement. Professionals
talk about the barriers to communication, and reflect on their own
experiences and early anxieties about working with disabled children
who do not use speech. Young disabled people share their experiences,
some good and some bad, and give advice to professionals on how to
communicate better.
How was 'Two Way Street' developed?
'Two Way Street' took just over one year to produce. A
consultative group involving nine disabled young people was involved
throughout: in the initial development of ideas; in deciding how to
approach other children to take part, and in preparation work in the
different settings in which filming took place. Most members of the
consultative group chose to take part in the video, in editing,
designing and launching the pack. One of the two project workers was a
disabled young woman who represented the consultative group, and
brought to the video her knowledge of disability rights, media, and
direct experience of many of the issues the video aimed to address.
Lessons from 'Two Way Street'
- Some young people had found it hard to get their views heard by
professionals, especially if they did not use speech or if their
speech was difficult to understand. They wanted to use the video to
assert the value of different communication methods.
- The children and young people's consultative group and the
employment of a young disabled woman as a project worker were crucial
in shaping the video and deciding the important messages to convey.
There were times when the views of the young people conflicted with
those of the adults and advisory group.
- It was difficult to find ways to make the process of thinking
about, making and then editing a video accessible to all those in the
consultative group.
- Including children who use sign language in a video about
disabled children had to be done sensitively to respect deaf politics
and identity as a cultural and linguistic minority.
- It was felt important to include disabled children and young
people from a range of minority ethnic backgrounds in the project and
on the video.
- Filming took a long time and careful preparation. Building
strong relationships between the children and those involved in the
project was important. Ensuring the film crew were sensitive to the
needs of the children and the issues helped make the project
successful.
What disabled children and young people say in 'Two Way Street'
The children and young people involved in 'Two Way Street' wanted
to challenge negative assumptions that many professionals have about
disabled children and young people. They felt that communication
should be a 'two-way street' (see Box 2); that too often, the focus is on young people's impairments
and not on the real barrier: adults who do not listen and do not try
to communicate 'on all channels'.
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Box 2: Hints and tips from young disabled people on communicating
"Don't blame us or have a go at us"
"We do have feelings"
"We're just like other children"
"Show respect, and don't patronise us"
"Take your time and make sure you understand"
"Talk directly to us, not just our parents, or our
carers"
"Don't be scared to ask questions"
"Really listen and understand"
"Make sure you really understand us because I have seen
carers, parents and other people who didn't even know or can't be
bothered to find out how we say yes or no. Sometimes people say later,
later, because they think we're asking for attention"
"Keep calm and get on with it"
"Don't be scared"
"Learn from young people"
"Show an interest in us, make it more than just a job"
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About the projects
'Ask Us': a national co-ordinator, Lynette Partington, developed
the methodology and ensured a consistent approach. The six projects
were based in Merseyside, Leicestershire, Yorkshire, Suffolk, Kent and
the West Midlands. The work was led by The Children's Society with
joint funding from the Joseph Rowntree Foundation. Close links were
maintained throughout with the JRF/Department of Health Quality
Protects (Disabled Children) Reference Group.
'Two Way Street': the work was led by Triangle and NSPCC
(National Society for the Prevention of Cruelty to Children) with
joint funding from the Joseph Rowntree Foundation. Triangle offers
Training and Consultancy on services for children with complex needs.
The pack was piloted with training groups across different
disciplines.
This overview of the two projects has been prepared by Dr Emma
Stone, JRF Senior Research Manager, Social Care and Disability.
How to get further
information
Ask Us CD-ROM – copies are
available at £5 each (plus 50p postage and packing per copy) from The
Children’s Society, Publishing Department, Edward Rudolph House,
Margery Street, London WC1X 0JL. Tel: 020 7841 4415; Fax: 020 7841
4500; order online at www.childrenssociety.org.uk.
A second stage of the work to produce a resource pack on doing
multi-media consultations is now in progress. For further information
on current work and on using the CD-ROM contact: Margaret Hart, Social
Work Manager, The Children’s Society, 8, Vine Street, Kersal,
Salford M7 3PG; Tel: 0161 705 7000; Fax: 0161 708 9482.
Two Way Street: Training video and
handbook about communicating with disabled children and young people
– copies are available at £55 (inclusive) from NSPCC National
Training Centre, 3 Gilmour Close, Beaumont Leys, Leicester LS4 1EZ.
Tel: 0116 234 7223; Fax: 0116 234 0464; or by email: sferrar@nspcc.org.uk.
For further information on Triangle services and consultancy: Tel.
01273 241015 or email: info@triangle-services.co.uk or visit the
Triangle website: www.triangle-services.co.uk.
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