“A society where everyone matters”

by Jess Cahill & Yewande Akintelu-Omoniyi

This article is from the Summer 2017 edition of Inclusion Now. Join ALLFIE to receive three issues of Inclusion Now per year.

ALLFIE recently met Dame Christine Lenehan, Director of the Council for Disabled Children (CDC), which represents the national disabled children’s sector. We thought it would be an interesting time to talk to her as she has been working for the government on a review of residential special schools. Her report is due out in early winter.

We asked Christine how the review came about. She explained her own motivation:

“My first job as a professional was working on long stay hospital wards in the 70s and 80s. So that really left an imprint on me. In honesty I’d been trying to look at residential schools for quite a long time, and that’s partly because if children are a long way from home I want to know they’re there for the right reasons and in the right place and getting the right outcomes.”

As well as some political background, she explained that the review was partly triggered by her previous report this year on children in mental health inpatient services.

There are 324 residential special schools and colleges across the UK (“We can now tell you this, we couldn’t before we started.”). For the current review they visited 10% of these across the Ofsted spectrum, from “outstanding” to “requires improvement”, and talked to young people wherever they visited. They spoke to local authorities and looked at why some were placing a lot more children out of the area than others. And they put out a call for evidence, receiving around 130 responses from parents and other people, including from us at ALLFIE. At the time we met, they were digesting what they had found.

Christine talked about her impressions: “I think the strongest thing that comes out of it is that this is not a planned and coordinated system. I think the worst thing for the children and young people is that they repeatedly fail and that they internalise that failure. When you ask the kids “why are you here then?” they say “because I got thrown out of this school and I got thrown out of that school and I couldn’t live at home and I couldn’t do this and I couldn’t do that” and they see that as belonging to them. What they don’t see is this is a system that failed you, they see themselves as being failures of a system.”

“The phrase we use at ALLFIE is that children are being set up to fail,” we commented.

“Yes and I think that’s true. I think we saw a lot of that. The strongest thing that came out of that for me was just how powerful bullying is. We know that bullying is a really powerful dynamic but actually it was SO powerful for these groups of young people. They were very positive often about the schools they were in because they were the first places they hadn’t been bullied in.”

She also feels the mainstream is becoming less tolerant of disability, and that the effect of much of the positive work on inclusion that CDC did with ALLFIE, with similar organisations and with people like Richard Rieser around the time of the Disability Discrimination Act had been lost. “One of the things that shocked us was the amount of children who should have done really well in mainstream education and were not there because reasonable adjustments had not been made.”

“One of the groups of children we saw were children with autism, who were bright, able kids who were going to get 5 A to Cs, or they should have done, but people were just not making the adjustments. People were expecting them to be different than they were. They were young people with autism in massive schools without safe spaces. Often they would come out of that because their mental health wouldn’t cope, they’d get very anxious about it, or again they would do something, usually to do with behaviour, that would take them out of the school, and the minute they did that the future for them in terms of success would start to go down fairly quickly. Yet we know for many of those people fairly basic reasonable adjustments in schools can meet their needs.”

When ALLFIE submitted evidence to the review we were struck by how much people’s stories reflected huge forces which have shaped their lives negatively and left them feeling quite powerless, and we asked Christine what she thought those forces were.

“We’ve now got this huge array of different ways of running education whether it’s free schools or academies or local authorities. What we don’t seem to have behind that is a set of standards for all children.” She also identified that this had created a challenge in the system about who provides specialist services, such as peripatetic hearing impairment teachers, and who pays for them, where they were previously the responsibility of the local authority and a shared resource for all local schools.

Then the diversity of schools can lead to discrimination. “It appears that some chains of schools are excluding and other chains of schools aren’t. When there’s that narrow attitude of ‘how do I meet my targets? Well I don’t take children who aren’t going to hit them,’ then actually that’s fundamentally wrong.”

She also cited cuts to NHS services and social care, and not just education: “People have retreated back into their silos. The NHS does only what it has to do, schools only do what they have to do. The children we represent need really good creative joined up commissioning. We wanted to be clear that austerity bites.”

As well as individual factors which triggered a child being sent to residential school, whether a school exclusion, difficulties with their social care package or family breakdown, she was clear that local authorities were experiencing problems with capacity due to a bulge in the child population, and also lack of expertise which was often about poor planning in the system. “The best local authorities plan. They understand who their children are, they’ve got really good data, they understand place planning. Local authorities that are in more trouble just react: ‘Oh my god, what have we got to do here?’ Some of that is to do with the fact a lot of their staff have gone [due to cuts], but some will just always be better than others.”

We also discussed why some parents actively seek residential schooling for their child. Christine had found that some, particularly parents of autistic children, thought specialist provision such as the “24 hour waking day curriculum” would give their child the best chance in life, but there was also a group of parents who struggled with their child’s care and found residential schooling more acceptable, believing that it would meet all their child’s needs, rather than leaving them to battle with separate authorities themselves.

“We’re trying to untangle these things because they’re difficult. Families should get choice, they should be able to choose lives for their children, they should get the very best. But is the very best you want as a parent the very best you want as a child? Are they things that we have really good conversations about? I’m not necessarily sure they are. And if we decide we’re going to fund these children at this cost and we take it out of the local system, are we then putting less money in the local system for more children? I think there are some really difficult dynamics behind this.”

The report had not been written when we met so Christine couldn’t tell us exactly what her recommendations would be, but she did define for us what a good inclusive education system would look like for her: “I’m not saying it was perfect before, but I think we have moved away from a good inclusion system and I think one of the things we will want to recommend back to government is an inclusion strategy. I think a good inclusion system is an education system that sees its purpose not solely about academic achievements, although I’m not saying that’s not important, but about educating children to be part of a whole society where everyone matters. I think we have got a system that’s become increasingly narrow about defining a cohort of children that succeed, and if you define a cohort of children that succeed you in effect define a cohort of children who fail.

“There are some really good inclusive schools. The quote always in my head is from a head teacher from a school in the North East. ‘We may be an 800 place school but we have 800 individual children with 800 individual sets of needs and a good school meets 800 individual needs.’”

“One of the challenges we wanted to bring out in the review is that assumption that because a decision was made at 9 that your child should be in this school does that mean they’re there till they’re 18? Should we see more children going for what is needed and coming back again?” The review may propose that residential education should function more as a system of shared expertise, which a child attends temporarily with the aim of assessing them and returning them to their community with a package of support. “One of the other things that happens to children is when they move away and then become young adults they have real issues about friendship groups and circles, so should we assume that going away is for the whole of your childhood or should we ask some questions about that?”

“One of the most frightening things about the first review that I did was watching children come out of their community at nine, ten, eleven, twelve and never returning.” She was uncomfortably reminded of her past work in long stay hospitals and that era’s attitude that removing disabled children permanently from society was “kinder for them”.

However she also felt there was a balancing act to get right. “One of the things we got wrong when we closed hospitals and introduced inclusion is we forgot that people make friends with people like them. So you’d have one disabled person in an able-bodied environment and isolate them entirely, because actually they wanted to talk to people who shared the same views, who shared the same challenges. There’s something about how you build those friendships and those worlds without saying the answer is to put all the disabled people in this environment and they can all talk to each other.”

We also asked how CDC could enable children to understand that they have rights such as the right to mainstream education, and Christine explained that just telling people about rights is not enough – children and service providers need to understand how these work in practice, so CDC have produced toolkits for practical activities, and worked with a theatre company acting out some of those situations.

We were also interested in how she felt about the challenges of representing a sector which has often very mixed views. “I think we are on a road to citizenship for young people. I don’t think we’re anywhere near the end of that journey yet. And I think each generation that comes along has to challenge for the next. Organisations like ALLFIE, because they have disabled people at their heart in a way we don’t, are part of that challenge. Looking forward I think we will keep falling out with ALLFIE and I think it’s a really important thing that we do, provided in the end what we have is a constructive dialogue. You’re the essential grit in the machine. One of the things I’ve learnt in my career is the need to learn from disabled people about their experiences.

“I recognise regularly the frustration of the disabled people’s movement that things do not seem to progress in the way they need to and most of the time that frustration is one that’s shared. I might regret this but I would encourage organisations like ALLFIE to keep being frustrated and to keep pushing us to move and to change.”