THE RESEARCH
Title: The School Lives of Children and Young People with a Spinal Cord Injury
Authors: Abigail Knight and Pat Petrie with Patricia Potts and Maria Zuurmond
Institution: Thomas Coram Research Unit, Institute of Education, funded by The Back-Up Trust
Objectives
This research study was carried out by the Thomas Coram Research
Unit, the Institute of Education at the University of London between
January and July 2008. The study was funded by the Back-Up Trust, an
organisation working with spinally injured adults and children, as part
of its Schools Project.
The main purpose of the study was to explore the experiences of
children and young people with a spinal cord inquiry (SCI) in
mainstream school. This was to inform the Back-Up Trust's Schools
Project, which aims to improve the quality of school provision for
children with a spinal cord injury.
The study asked young people, parents and carers about their
positive and negative experiences. It also aimed to investigate
schools' experiences of working with young people with a SCI and the
challenges and factors that help them work effectively with these
children.
Methods
A qualitative approach was adopted for the study. There were 82
interviews with children, young people, parents, carers and
professionals, across all areas in England and Wales. Twenty-nine
children and young people between the ages of 10 and 18 were
interviewed: 15 boys and 14 girls. Most were of secondary school age
and were white British. Twenty-eight parents and carers and 25
professionals were interviewed. The vast majority of the professionals
were school-based and included teachers, teaching assistants and head
teachers.
Findings
Returning to school after their injury was, for many spinally
injured young people, an unsettling time where both the Environment and
people appeared unfamiliar. One of our interviewees, 14-year-old Sidra,
said: "It was hard. I was scared. I didn't know what to expect. I
didn't want to go back."
Children felt better about the prospect of returning to school when
they had been visited in hospital by school staff and friends. They
also appreciated being sent "get well" cards. This contact ensured
continuity and acted as a reminder that they were cared for and not
forgotten.
Having the opportunity to visit the school to re-establish
friendships and to test out disabled accessibility was also important
to children and their parents in helping them to settle back into
school.
Inclusion in school activities
Some of the schools visited for the study had physiotherapy rooms so
that children could benefit from having physiotherapy sessions at
school. However, some young people were missing out on lessons and
social times to have physiotherapy. Many young people also reported
feeling excluded at lunchtimes because the schools wanted them to leave
their lessons early so that they could get to the dining hall before it
became too crowded. Although this might have met health and safety
regulations, leaving before the end of lessons sometimes meant missing
the setting of homework and resulted in some young people feeling
singled out.
Some young people with a SCI experienced exclusion from PE and sport
at school. This was due to inaccessible play areas, such as fields and
gyms, and a lack of adapted equipment.
Transport and school trips
Many of the young people and the parents interviewed had experienced
problems with their local authority transport to and from school. These
problems included being picked up very early and being dropped off
late, or the taxi not turning up at all. The lack of flexibility with
transport was also a difficulty experienced by many. This resulted in
young people being unable to stay late for after-school clubs or to
visit friends.
A small number of young people had more flexible arrangements. The
driver would transport a friend or pick them up at a different time if
necessary. In most circumstances having the same driver helped. This
allowed a relationship to be built up between the driver and the
family.
Most of the young people interviewed had experienced difficulties
with going on school trips because Disability accessible coaches were
either unavailable or the cost was prohibiting schools from using them.
The role of the teaching assistant
The relationship between the teaching assistant and the young person
with a SCI was found to be a crucial one, but not one without its
challenges. Young people and their parents appreciated teaching
assistants who were caring but not over-protective, and who were
sensitive to the young person's need to socialise without interference.
Teaching assistants and social care workers have a broad role to play
in supporting children and young people with a SCI, which includes
practical tasks alongside listening and advocating.
Co-operation and information sharing
The study found many examples of an Occupational Therapist or
physiotherapist playing a central role in the young person's transition
back to school. However, generally there were still tensions evident
between health and education, especially in regard to the funding of
specialist equipment. A clash of attitudes about whether a child's
educational or health needs should be prioritised was also evident,
implying a lack of understanding by some professionals of the holistic
philosophy underlying the Every Child Matters agenda.
Partnerships between parents and schools were generally close and
positive. This was particularly apparent when the schools were not
defensive about what they did not know, and parents did not blame them
when things were not done as well as they would hope. Partnerships
worked well when both parents and schools were open and receptive to
learning, sharing information and expertise.
Independence and participation of young people at school
A wide range of factors determined the young people's levels of
independence at school. These included the accessibility of the
physical environment, the availability of suitable changing facilities
and the confidence of the teaching assistant in allowing the young
person more freedom.
Independence at school was also determined by the willingness of the
school to be flexible about health and safety rules and the
consideration of each situation in the light of the child's individual
circumstances. One school, for example, gave a young person a mobile
phone, which he could use in case of an emergency. This promoted his
independence as it meant he could move around the school freely, using
the lift and going to the toilet without assistance.
Some young people were regularly asked by the school for their views
about disability issues as well as about their own experiences at
school. One young person, for example, had been involved in the
planning of a new building at school from the perspective of a
wheelchair user. But for many young people there were no mechanisms at
school for giving their views outside their annual review meetings.
Attitudes towards disability
Above all, the school's ethos and its attitude towards disability
largely determined the quality of the school experience for spinally
injured children and young people. A positive attitude to disabled
children greatly affected young people's inclusion in whole-school
activities and their independence.
A secondary school teacher summed up the importance of the school's
attitudes to disability: "This is a huge school but the barriers are
few and far between because of the attitudes of the rest of the school
that sees disability not as different or strange. It's about inclusion
and it's about making sure the curriculum and the timetabling is
inclusionary too" (special needs co-ordinator).
Practice implications
Working in partnership The study highlighted the
importance of education, health and social care professionals working
closely to be able to meet the needs of the child or young person with
a spinal cord injury. It is recommended that regular meetings take
place to address issues such as accessibility, timetabling, school
activities and other needs. Ideally these meetings should involve the
young person, their family and professionals from the school setting
and relevant social care and health agencies. These professionals might
include the school's special needs co-ordinator, teaching assistant,
social worker, occupational therapist and physiotherapist. Meetings
such as these should take place prior to a young person's return to
school after their injury and at other transitions, such as between
primary and secondary school.
Recognising individuality Although the study
highlighted many common themes and experiences, it was striking how
individual many of the children's experiences were. Some children, for
example, benefited from having specialist equipment at school, such as
an adjustable workstation, while others felt that this restricted their
freedom and independence. Some young people appreciated having their
wheelchair pushed by their friends, whereas others did not. An
important conclusion from the study is that individual circumstances
and preferences need to be assessed carefully by those working with
disabled children. Again, this assessment needs to be carried out in
close communication and consultation with the child or young person,
parents and carers and other professionals.
The right to inclusion Underpinning all the
findings of the study was the importance of professionals' attitudes
towards disability and young people's right to inclusion. It is
important to emphasise that all children and young people, regardless
of disability, have the same opportunities as other young people, both
inside and outside school. As demonstrated by this study, specific
examples include the right to attend all school trips, be included in
PE and sport at school and to be fully included in the social life of a
school. It is not sufficient to say that disabled young people should
have the equal right to inclusion. This needs to be complemented by
careful forward planning, appropriate funding and the sharing of
information about SCI and its implications.
Links and resources
Abigail Knight is a senior researcher at the Children's Society
This article is published in the 2 October edition of Community
Care under the headline "Children with a spinal cord injury returning
to school"
