Children and young people with SEN and disabilities who attend residential special schools often many miles away from their parents face serious barriers to having their voice heard.
Some of these young people board on a part-time basis while others receive around-the-clock 52-week care.
They often have the most complex needs and they are among the least visible children in society, making it all the more important that we be attentive to their experiences, views and wishes.
Children should have their say, whoever they are, whatever their needs. Yet this is no easy task for children in residential special schools, especially for those for whom communication is limited or difficult. For children and young people with SEN and disabilities, decisions may more often than not be made for them, not with or by them.
In a recent project funded by the Office of the Children’s Commissioner, we sought to understand the realities of the lives and experiences of young people with SEN and disabilities – the good and the bad – of growing up in school.
We wanted to know how much they get to have a say in the decisions that affect their lives. We engaged with more than 80 children and young people, more than 100 teaching and care staff, and more than 30 parents in 17 different residential special schools across England.
Although children reported varied experiences, many painted a positive picture of their education and care. Overall, the findings suggested that, although many miss their families, the children participating in the research were happy in their current schools, felt part of the community engendered by the schools, and felt looked after and treated well.
This is important to recognise. Many of the schools also appeared to be doing an impressive job of eliciting children’s views, often in testing circumstances. But there were two instances in which young people’s views either were not elicited or were not listened to.
The first of these related to entry into residential schools. Few of the children who took part in our study were actively involved in choosing their current school.
One young woman with autism told us that she had “none, no choice at all. They just said, go to this school, so I got in a taxi one morning and they brought me to school ... I was scared.”
Many parents noted the adversarial nature of the system, that there was too much bureaucratic “red tape” involved in getting their child into the school that they felt best fit his/her needs.
This process, often involving one or more tribunals, placed much stress and anxiety on families, and often meant that the young people involved were simply unable to have a voice.
The second of these instances related to exit from these schools and transition to adult services. The school staff that we spoke to reported making many efforts to ensure that this transition was as smooth and successful as possible.
Yet they repeatedly noted that failures of the system, particularly delays in decision-making by local authorities, were preventing such success.
One staff member explained: “So we’ve got a guy and he’s going to be leaving in the next week and the placement has just broken down. It was identified before Christmas but wasn’t agreed and it still hadn’t been agreed by the local authority after seven months. And now it’s not happening.”
For this young man and for others in our study, having a say in their future lives – even as adults – appeared inconsequential.
Another 19-year-old man with moderate learning difficulties, Peter, described a similar difficulty. When he joined the school he was in foster care, with extremely limited and regulated contact with his birth family. In recent years, the school has offered a very positive work experience placement, developing skills in a trade that Peter is passionate about. His boss would have happily offered him some sort of employment had Peter been able to stay in the area. But this is not what has happened.
Peter’s home local authority – which is quite far away from the school’s local authority – decided that the best thing for Peter was to be moved back to his home authority at the end of his schooling.
However, when asked about what he would like to happen in the future, Peter was clear: “Staying here, staying here forever and in my work experience.”
He described being “scared of leaving” and “worried” about what was going to happen next. And he certainly had reason to be.
Peter had articulated very reasonable desires but these have not been listened to. Instead, Peter has been forced to return to a locality where he has no existing relationships and has therefore been denied his right to the only “family” life he might have. His voice simply was not heard.
Recent legislation has sought to turn this around. Under the current Children and Families Act 2014, local authorities have a duty to involve young people and their parents in educational decisions, giving them greater choice and control in the support and services they receive.
Whether such legislation allays these concerns remains to be seen. What seems clear is that some people in authority still presume to know what young people want, don’t listen to them – or possibly even worse – listen but don’t act on their wishes.
It is our duty to promote the rights of these young people to have a say in their education and in other decisions that affect them. It is also our duty to enhance their life chances and opportunities at every stage of their lives.
Our experience suggests that the vital precondition of doing so is to elicit their views and experiences – even for children with limited communication who face barriers to such participation.
We know it is possible. We now need to listen.
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Dr Liz Pellicano is director of the Centre for Research in Autism and Education (CRAE) at the UCL Institute of Education. Visit http://crae.ioe.ac.uk/