Getting Political About Education

Having three children at school has freed up time for me to usefully spend on admin and being angry. We have to submit an application for Ben to go to secondary school next year (How is he old enough? Where did my baby go? Etc. etc.) It’s a straightforward form where we express a preference and the Local Authority then processes applications, consults with schools, reviews Ben’s Education, Health and Care Plan (EHCP), and allocates a school to him. 

But of course it doesn’t feel straightforward at all, because all decisions about education are set against a bleak landscape of onerous budget constraints. 

We would like Ben to move to the secondary campus of the school he already goes to, but this will require our Local Authority to agree to him continuing his education ‘out of borough’. Judging by the experiences of our friends with children slightly older that Ben, they might push for him to stay ‘in borough’, which is cheaper largely because the transport costs are lower. We’ll see… 

What makes it anxiety provoking is that it’s hard to trust that decisions about Ben’s education will be made on the basis of what is best for him rather than on the basis of squeezed budgets. Spending on education has fallen, and the amount of money given to Local Authorities to fund schools has dropped, while the number of pupils needing extra support has increased. Of course it has, because if schools are stretched then they need formalised funding (an EHCP) instead of informally supporting children within the standard offer of schools.

Ben’s EHCP sets out what he needs to learn and it’s worked brilliantly for him. It opened the door to his current school which has supported him well. The process to get him into school initially was horrific, but let’s save that for another time. So the EHCP process can, and does, work for some and Ben has benefitted hugely from his EHCP setting out what he needs and then matching the funding accordingly. But past success is no guarantee of future provision. We don’t know if the Local Authority will agree to Ben staying at the school that he has thrived in and if they don’t then we will have the option to argue our case against the Local Authority in front of the Special Educational Needs and Disability Tribunal.

The introduction of EHCPs was meant to solve the issue of funding for pupils with special educational needs but of course it has not, and parents take their cases to tribunal every day either to get the support their child needs or to get an EHCP in the first place. They have a good chance of winning – 92% of the appeals decided last year were in favour of the child, family or young person. 92%! So Local Authorities know they are likely to lose but take families to tribunal anyway. It is estimated that Local Authorities spent £40m spend in 2018/19 on SEND tribunals. By all accounts, going to tribunal is hugely stressful and expensive (if you can afford a lawyer) and the child or young person is left waiting for support.

Families are going to tribunal because it is the only way to get what their child needs in a system where there is almost no extra capacity. The number of pupils in special schools has increased, but mainstream schools are still trying to support pupils with special educational needs and insufficient funding. As the head of Max and Molly’s school told us, ‘A recent survey of 600 Headteachers showed that 94% found it harder to resource SEND than two years ago and only 2% felt top up funding was sufficient to meet Education Health and Care Plans.’ This kind of funding shortfall inevitably results in children not being taught as well as they could be, and those who could manage in mainstream schools with the right support moving to more specialist provision where they will. Which is a kind of segregation.

The effect of this creaking system on children and their families is awful but obvious. But even if you, like us, are lucky enough for your children to be in good schools, with really good teachers, it feels like you’re on the edge of a precipice. In England total school funding has fallen by 8% since 2010. Education spending as a percentage of gross national product has fallen from 5.8% to 4%. We know what the pinch of funding cuts feels like – the respite stays that have been withdrawn, the transport to playscheme that evaporated, the wheelchair appointments can’t keep up with the growth of Ben’s legs. My family has been insulated from the worst, but none of it feels secure. Perhaps we are just one decision away from Ben not being at the school he loves, or getting the help with communication that he needs. 

It doesn’t feel like the system isn’t set up to be fair and right, but rather is trying to keep going in almost intolerable scarcity and it needs to ration the resources it offers. It doesn’t offer additional help when it might be useful, it needs each person to prove beyond all reasonable doubt that the help is essential before the money can be released. 

This should fill us all with rage: for the pupils who aren’t getting the support they need, for the families that have to commit to stressful tribunal processes, and for schools that are struggling to give pupils educational support in a near impossible situation. I’ve written about this before here, and no doubt I will again, because it’s outrageous. The government are encouraging schools and parents to see SEN pupils as draining funds that could otherwise support more kids. They are overseeing a shift that encourages pupils towards special schools, not necessarily because that is the best place for them, but because that is the only place that might have appropriate support. That is a travesty for all our kids, who find themselves educated in less diverse, less inclusive schools.

Who knows what will happen with Ben’s secondary placement. I think it’s common to find a child moving to secondary school stressful but surely it doesn’t need to be this way. The system is set up to pit families against Local Authorities, schools against parents, and the dynamic is forever stacked against those with least power. Education is not this government’s priority and that’s exactly what it feels like.

Of all the things this government is doing to reduce opportunities, increase inequality and further demonstrate its disregard for disabled people, this is the one I am most angry about this week. It’s not fair on our children or their teachers.

Ben is 7!

Ben is seven! We celebrated with, amongst other things, an egg-free chocolate cake that I whizzed up in our blender and gave to Ben through his feeding tube.

 

With every passing year I sound a bit more like my mum: “I can’t believe you’re seven years old! I remember when you were just a baby!” But it’s true – I am genuinely surprised that we have been parents for seven years and that Ben is so big and tall.

As with all recent birthdays, James made a Ben-themed video of the past year and we watched it with our family, projected on to the wall. I would recommend this as a way not so much of celebrating the child’s birthday, though Ben and Max enjoy seeing themselves, but more as a way of congratulating oneself on another year of parenting. It is heartening to see how much children have changed and grown over the year, how much you have done with them, and ultimately how justified you are in feeling so tired.

The other thing that we realise when we (James) make these videos is that there is always way too much material. We have done too much fun stuff and taken too many photos and videos to fit into one short film. It makes obvious that Ben is living a full life, with variety and fun, surrounded by loving family.

 

 

Just after Ben’s birthday he had an appointment at our local rehabilitation centre where wheelchair services, assistive technology and other helpful services are based. There are always all sorts of disabled people coming in and out for appointments. I was sitting in reception with Ben and Molly, waiting to be called. Molly was a bit grumpy because she hadn’t yet had her morning bottle of milk, Ben was happy watching a screen showing footage from four security cameras. A lady in a wheelchair was pushed close to us (and I have written that in the passive deliberately, because the person pushing didn’t ask her where she wanted to wait). She was an older lady, I would guess in her seventies, immaculately dressed and made up. She smiled at us and after a few moments said (as is common):

“You’ve got your hands full!”

I smiled and we had a brief chat about how old the kids were, how cute Molly was, how much she liked milk. Then the lady asked, as she looked at Ben:

“Is he able to go to school?”

“Of course,” I said. “He goes to a brilliant school which he loves, don’t you Ben. We’re just here for an appointment.”

I could see the pity-look appearing so I was even more positive than normal about both Ben and his school. But as she was leaving she said:

“It’s so hard for these handicapped children. So hard for their families. I feel so sorry for them.”

It was one of those times when I felt like I didn’t have the words to be able to explain to her what our world is like, what Ben’s life is like, how we (try to) treat him. I have no idea how or why she uses a wheelchair, or how old she was when she first used it, but clearly she has lived a different experience.

It’s impossible in passing conversations like this to say all I want to, but later I felt so sad that she assumed Ben didn’t go to school, that his life is somehow unbearably hard, that it’s okay to talk about him like that right in front of him. Clearly being disabled in some way doesn’t automatically educate you in how to treat disabled kids in 2016 (or 2017).

I don’t want to minimise Ben’s challenges – loads of things are tough for him, almost nothing comes easily, and much is really unfair. And as a family we sometimes struggle when Ben’s disability makes things more complicated for all of us. But right now, as a seven year old boy, Ben is having a good life most of the time (and really, which child is having a good life all of the time? I mean every kid has to tidy up or eat Brussels sprouts or go home some of the time). He has loads of fun. He laughs most days. He is loved. He is learning. He is thriving.

By way of illustration, between his sixth and seventh birthdays Ben:

  • Had a baby sister: tolerated Molly’s wailing, put up with a third of our attention rather than half, learnt to deal with her grabbing onto his legs and pulling his hair. And then got a new baby cousin, Ralph, who also sometimes likes a bit of a wail.

 

  • Learnt to cycle his trike on his own: whizzed round in circles, racing Max and being unbelievably pleased with himself. He is still working on learning how to steer.
  • Made really noticeable progress with communication: starting to eyepoint using his communication book to tell us things, more reliably telling us yes and no.
  • Made huge progress on using his eyegaze computer: using it almost every day, knowing exactly what he wants to do, reliably choosing stories and then navigating through them like a pro, using communication software to create messages that were totally appropriate to the moment.
  • Went on holiday to Cornwall and France: first flight for three years, loads of swimming and beach time, hanging out with family and friends, getting tanned (and on one unfortunate occasion burned), getting a new passport.

 

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  • So many jokes with Max. So many lovely moments between these two boys.

 

 

  • Started staying at a children’s hospice for the occasional night, didn’t seem to be traumatised.
  • Moved house, again. Visited the building site to review progress and try out his new lift. Before he is eight he should have managed yet another move, his sixth since he was born.

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  • Began to be hoisted (rather than manually lifted) for most transfers between chairs and beds: coped much better with this than his mum.
  • Listened to lots and lots of audiobooks: his bluetooth speaker and ipod have become essentials wherever Ben goes, and there’s therefore been less screen time, developed a love for the books of David Walliams (except the highly emotional ending of Gangsta Granny) and late in the year Harry Potter.
  • Finished his first year at a new school: totally smashed it, participated in a whole school play in his walker, another year of loving learning, fascinated by the Great Fire of London.

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  • Was increasingly contented: Ben has spent the last year less fractious and generally happier. We spend less time flicking though films to find the one he is happy to watch, less energy trying to entertain him in public places so we can finish our lunch. This is probably connected to us having more (paid) help, and Ben getting older and more mature, helped – we think – by his surgery in 2015. As long as we explain what’s what is going on or is about to happen, Ben is noticeably more able to deal with unfamiliar or demanding environments. Long may it continue.

As we celebrate another year of Ben being our son, I am so very proud of this boy (and still so very sad that seven years ago he was still in hospital). He is such a joy to us all, so filled with patience and humour and determination. Happy New Year everyone – let’s all hope we come across more Bens, less pity and more positivity in 2017.

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Where kids go to school

Max started school in September. It has made me think a lot about how we educate kids with disabilities.

Max’s school is a short walk away from home. It is a typical inner city state primary. Unremarkable for being similar to lots of other schools in London. Remarkable for being like many other schools which are also educating loads of kids with different needs, languages and backgrounds. I have been consistently impressed by how they have calmly settled thirty new kids into school and appear to be totally in control, while I struggle to keep three kids in any kind of order at home. Max has been learning at a furious pace – generally uncommunicative about his day, he’ll then slip in some comment about how to spell a word, or write something, or tell us about numbers in a way that shows he is really soaking up the things he is being taught.

One of the reasons I liked the school when we originally looked round was because it seemed to accommodate difference well – it has specialist provision for pupils with autism, it has a dyslexia centre. It has the kind of diversity of kids you would expect of an inner London school. I believe these things are important.

(Sidenote: a teaching assistant who we loved at Ben’s old school once told me she chose her non-disabled daughter’s school based on it having a lot of kids with special educational needs and being well known for inclusion. People like that make the world a bit brighter.)

Out of the classroom, and purely by chance, it turns out we live on the same road as two other kids in Max’s year and as we all troop up and down the hill every morning we have got to know each other. So within weeks of starting school Max was being invited over, and James and I were getting to know other parents. We bump into parents from the school in other local places and stop for a chat. Apart from this being really fun for Max, it has meant us being able to ask for favours; when Ben was ill, another mum collected Max for me and brought him home. This is new to us and it’s brilliantly straightforward.

I was worried about Max starting at a school where no-one knew Ben. Of course I was wrong to be concerned – within the first few weeks he had described his family with accompanying photos: ‘Me and Ben are lying in bed. Ben’s disabled and my bed isn’t that big so he sleeps downstairs’. Within the first half term the whole class had watched videos of Paralympic athletes and discussed overcoming adversity. As the teachers said at the time, the kids were too busy being impressed with Jonny Peacock’s speed to notice his lack of leg. Max has the confidence to explain Ben’s disability when he needs or wants to and he knows it isn’t negative or something to be self-conscious about, it just is.

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So far Max’s school is everything we hoped it would be. It is enabling the small ordinary interactions of living in a community. And in that respect, it is really – and unavoidably – different to Ben’s school experience.

Ben goes to school five miles away. It’s a really good school, and he’s there because we think it’s the best school for him right now. It takes about an hour each way for him to travel there and back every day. That is not that unusual – kids at Ben’s school come from all over London, in every direction.

James, a carer or I take and collect Ben two days a week. We chose to do that, so we see his classroom and his classmates, and have chats with his teachers and assistants. The other days he gets a school bus, like almost every other child in the school since. We rarely bump into other parents at the school.

Years ago, we looked at Max’s current school as a school for Ben. They were willing to consider it, but he would have been the only physically disabled child in the school and they had no track record of teaching a child like him. We decided it was better for Ben to go to school further away that had proven expertise in teaching children like Ben, in helping them to communicate and in maximising their potential.

We think this was the right decision for Ben, but it means we removed him from his local community. It is only through our efforts to engage him in local activities outside school (and my reliably local family) that he will have any sense of belonging in our little bit of south London. As I have written about before, life is all about human connections and this is more important, not less, for children with disability for whom interacting is challenging.

In some ways this is where Max comes in, as an unwitting but ever reliable social conduit. He invites his friends over, and then Ben is surrounded by boys playing with helicopters. Those boys, and their mums, dads, sisters and brothers,meet Ben and then recognise him in the street. They ask questions and get to know him. We take Ben to the Christmas Fair at Max’s school, where he meets Max’s teachers, other parents and kids, and really enjoys the Salvation Army brass band (obviously).

As ever, the path of inclusion never runs smooth, and Ben couldn’t meet Santa at the fair because the grotto was up two small flights of steps. But never mind – Max told Santa he needed a present for his brother, who is disabled, and wasn’t there, and Santa handed it over. They both got books about the Lego movie so we are all now clear about exactly why Vitruvius (not that one) is so amazing.

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There’s an argument to be made that it makes sense to group children who need specialist input together (and no-one appreciates the expertise of really specialist teachers, speech and language therapists and technologists more than me). That it makes sense to have a critical mass of similar-ish kids in a school together. It’s kind of obvious, and I have sympathy with this point of view, not least because kids like to be with their peers and for some children, perhaps being the sole physically disabled kid in a school is not necessarily that bolstering an environment. I think it works well for Ben to be somewhere with kids that communicate like him, and professionals experienced in teaching kids like him.

It’s not good enough that at 8am every morning hundreds of children with special educational needs are being bussed around the city, sitting in traffic jams while they try to get an education, driving past the local kids who could have been their friends. It’s not good enough that the families of the kids on the buses don’t get to know local parents. How otherwise are they supposed to forge the kind of friendships that are based on mutual understanding of how you feel at 9am having used the cross voice at least five times to ask your child to put on their shoes/not get run over by a motorbike/stop walking on that bit of wall, when you have run to school as you tried to keep up with your child scooting too fast down a hill, and are now wondering if someone is going to give you a medal for remembering the bookbag?

Obviously, calmly loading your older child on to a bus arriving at your house at 8.15am can sound attractive in comparison to the 9am chaos, but is it right? Is it really the right way to organise an education system? Is it fair for disabled kids? And are we really doing right by our non-disabled children?

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(Unconnected, cheerful picture)