The conversations project: a report to the steering group of the national review of services for disabled children and young people

We started the Conversations Project because we wanted to find out what
things were most important to disabled young people and what they thought
about the services and activities that they used and what they would like to
see developed. The project involved 65 disabled young people from across
Scotland. They were recruited from 10 organisations and were aged between
9 and 22; 39 were male and 26 female. The conversations took place in a
variety of places including schools, youth groups and short breaks centres.
Six main themes emerged from the young people’s discussions.
These were:
1. Consultation and participation
The young people felt that it was important they were listened to, and that they
understood the reasons for decisions that affected them.
Many of the young people who took part in the Conversations Project felt that
they were listened to. They felt that they had opportunities to put their views
forward and to say what they liked and disliked about many things. Many of
the groups the young people attended encouraged them to plan their own
activities and some young people were also involved in self-advocacy work
and had spoken at conferences.
The young people did not always agree with decisions that affected them but
generally understood why they had been made.
Not having the opportunity to put their views forward, or being provided with
explanations for important decisions, made young people feel frustrated and
lacking in control.
The young people wanted to be treated as individuals and for people not to
make assumptions about them based on their age or the fact that they were
disabled.
2. Involvement in activities outside school
Young people enjoyed a range of activities including swimming, computer
games and socialising with friends. They wanted to have ‘normal’ social lives
and to spend time with people their own age. However many of the children
who took part in the project did not experience this.
Difficulties with accessing public transport meant that many young people had
to rely on their parents or, in some cases, stay at home when not at school.
Some young people felt that there was not much for them to do in the local
area while those who did not attend school locally felt isolated as they did not
know other children where they lived.
Many of the young people talked about their positive experiences with groups
and clubs for disabled children and young people. These were an opportunity
for them to enjoy activities with others their own age.
3. Relationships
Having friends their own age was very important to the young people who took
part in the project. Groups and clubs gave people the opportunity to do things
with other young people but did not always lead to real friendships.
Various barriers to making friends were identified. Difficulty meeting up with
people outside of school was a common problem. The need to arrange
personal support or transport meant that some young people could not easily
get together with others. It also meant that they were often accompanied by
adults.
Some young people found school to be a lonely experience. Those who
attended a ‘special’ unit at a mainstream school did not feel that they were
part of the main school and other pupils were not always accepting of
difference. People who attended a special school had difficulty maintaining
friendships outside of schools.
Times of transition could make it hard to maintain friendships as people
moved away or went on to do different things.
4. Physical and attitudinal barriers faced by the young people
Access to transport was a major barrier mentioned by many of the young
people. There were practical difficulties using buses and trains whilst the
negative attitudes among some drivers had put some young people off using
public transport.
A lack of disability awareness was also highlighted and several young deaf
people had experienced poor deaf awareness in audiology services. These
issues could be addressed with better training.
5. Transitions
The young people needed more information about moving from school to
college, university or work.
The move from school to college made some people nervous. They were
often unaware of other options that might be available or how going to college
might benefit them in the long term. This meant they could not make informed
decisions about whether or not to go to college or what to study.
The transition from school to university had been positive for those who had
experienced it. However, some young people believed it would not be possible
for them due to their support needs. Again, better information is needed about
the options and support available.
6. Aspirations for the future
The young people expressed a variety of hopes and ambitions for the future.
They hoped to have their own homes and families.
They wanted to work and many had ideas about what jobs they would like to
do. They wanted support and guidance to achieve this.
Aspirations were often focussed on the short term. Young people needed to
be encouraged to think about what they might want to achieve in the long term
and the support that they would need to do this.
Conclusion
The young people involved in this study felt positive about many aspects of
their lives, including being listened to and the support they received from
voluntary organisations. However, many of the young people lacked
opportunities to develop friendships with people their own age and felt socially
isolated. More needs to be done to make sure that disabled young people are
fully included in their local community. Finally, the project showed that young
people did not always have the information they required to be able to make
informed decisions. If consultation is to be meaningful and young people are
to be able to have a greater say about their lives, then they need access to
advice and support.