Posts Tagged With: SEND

1:1 or TA? Big difference.

I have a memory of going to a Wigan Athletic away game with my dad when I was little. It was at Wimbledon. We’d gone by train and we had to get a bus back to the station after the game,and there were crowds piling onto the bus. The driver shouted ‘hold on, I’ve only got 2 pairs of hands’, and after my dad explained it to me, we thought it was really funny.

What’s not funny, is that special needs schools often think they can share out the one to one support, meant for individual children, and specified in their statements or EHCPs. I wrote about how I wondered if support staff have 2 pairs of hands here: Legal Alien

“Another reason the school isn’t right, is because even when kids have a statement or EHCP with specified 1:1 written into it, the school don’t provide it. They say they don’t provide a named 1:1, but assure me the pupils who need 1:1 get it. I’m no mathematician, but if there are 10 kids in a class, with a teacher and 3 teaching assistants, and a child needs the toilet, that would potentially leave the teacher and 1 TA in the class. And whilst the pupil who needed the toilet has gone, with the 2 staff, another child needs some help from the TA, to turn a page in a book for example, that leaves no TA left to support the other 8 kids. And so on, and so on. There seems only one explanation for what happens if TAs are taken from the classroom to help a child: the other children don’t have support. They wait their turn to get help. They must be sitting waiting, doing nothing, because TAs cannot be in 2 places at the same time. This thing about not having ‘named’ 1:1s (which just means not having 1:1 all the time it’s needed) is bizarre. How can a TA feed 2 children at the same time? Does he/she have 2 pairs of hands? Can he/she help a child drink, at the same time as helping another child cut up his food? Can he/she spoon feed a child at the same time as stopping another one choking on the full sausage he’s put into his mouth and not chewed up properly? Can he/she take a child to the toilet when 2 other children are relying on her/him to feed them? The answer has to be no. But it must be happening, and each child who isn’t given the 1:1 support specified in their legal document is having to compromise like no other child of their own age without the same needs has to. My youngest son doesn’t have to wait to go to the toilet. At lunch time he gets his food and eats it and has time to play outside, just like the other kids. Why is it ok to expect the most vulnerable of our society’s children to wait unnecessarily to have their basic needs met, before they even begin to attempt to learn in a lesson?”
I’m not being flippant now, I’m being deadly serious: A boy fell down a flight of stairs at a Birmingham school and died on Tuesday (see here) There aren’t many details, which in itself is worrying, but the boy was in his wheelchair, was blind, and attended a special school for children with learning disabilities. Without details of what happened, where was his 1:1? Did he have a 1:1? If not why not? A teaching assistant can and, I agree, encourage children to work in small groups as well as individually, but if that TA is also the 1:1 responsible for a child’s safety, that TA doesn’t suddenly grow another pair of hands, eyes, ears, to be able to keep 2 or 3 children safe. Being in a special school doesn’t suddenly mean the environment is automatically safe. It doesn’t. And neither does it mean the staff in special schools are superhuman. They aren’t.

So when decisions are being made about whether a child’s 1:1 can be shared between other children, determine how many pairs of hands he or she has, and if it’s just the one, decide whether LA cuts would justify any of these children being left alone for a split second and getting hurt or worse still killed.

I feel so sad for this boy and his family, and I know my condolences won’t even scratch the surface for them. I can’t imagine how they must be feeling. I hope they get answers though, and that someone is held to account.

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Third person, twice removed


Where has the first person gone??  Why does it feel as though the person at the centre of SEN and disability has disappeared???

I occasionally feel annoyed if someone refers to my disabled son as ‘he’. Usually though if anyone does say ‘he’ in a conversation or letter/email, it’s because they are already using his name frequently so I know they don’t think of him as a thing and it would be excessive to use his name at every opportunity. There are other times, in conversation or in letters/emails, when Alfie’s name isn’t used. It wouldn’t usually upset me if I knew the person well enough to know it wasn’t intended in an offensive way. I would be upset, if I thought the person didn’t respect my son as a person and I didn’t know that person’s views or values of disabled people and that’s an easy situation to find yourself in. I suppose how it affects me depends a lot on how I’m feeing at the time too, and at the moment I’d be really upset if someone were to call my son ‘him’ or ‘he’.

The one that makes me angry though is when disabled people and children with SEND are referred to as ‘they’, and this subject has been done to death so I’m not going to explain why. If you don’t understand why, and you’re a chair of a governing board, just resign.

At the moment in SEND world I feel like some of ‘them’ are seen as a new phenomenomena*;like they’ve just popped up from somewhere, and no-one knows what to do with them but at other times, they are treated as though they’ve been around for centuries and the way they are treated hasn’t changed at all.

(See how awful it feels reading the last paragraph using they, them etc?)

I read an article tweeted by Jarlath O’Brien about 2 whistleblowers in Australia who’d exposed terrible treatment of disabled youngsters in schools, and the thing that stood out was way one of them had been told after they’d complained “My manager said all disability organisations, there is abuse. And if I can’t handle the abuse, maybe I need to consider my position in the disability industry.”

I could ask, “since when has there been a “disability industry”?” but the last 11 years of having to buy products and equipment for my son at ridiculous prices tells me: at least 11 years!! But not only products and equipment. It seems you can (and often have to) buy pretty much anything relating to SEN & D. My current educational outgoings for my youngest son, who doesn’t have SEND are for uniform, shoes and scented erasers yet Alfie needs a wheelchair, a ramp to get in and out of the house, home adaptations, a rise and fall bath and washbasin, changing bed, hoists, slings, special toilet that cleans the person, pull ups, special bed, orthoses (to keep his feet in correct position), wheelchair adapted vehicle, IT, support workers, [a school with staff who know how to teach and support kids with SEND], a solicitor who can represent my son when these things aren’t provided, and probably others I’ve missed out. All of these things cost money, and this is part of the industry. An industry which pays people a salary, and I’m not for one minute saying this is wrong or unscrupulous. Not at all. I’ve experienced unscrupulous companies and unscrupulous people within companies who could just as easily have been working on a job unrelated to disability, but I’ve experienced MDs of companies who seem to think disabled people should accept a poor standard of service without complaint. In fact I’ve experienced 2 examples of this very recently.

The experiences make me angry, because disabled people rely on these things and when the service is poor, have very few other options or companies they can go to. In other words, they often have no choice, and the company still profits without having to up their game for future sales. It’s like the cost of something is only ever important to the person or company/organisation selling or providing the service. What about the cost to the person on the receiving end? When did that start being irrelevant?  I’m increasingly feeling that LAs are considering themselves to be the victims of the SEND ‘reforms’ too, as if the children are somehow invisible.

Special Needs Jungle blogged recently about the botch up that is the SEND Reforms. And it really says everything it needs to. In particular, I agree with this “We need to put politics and self-interest aside once and for all for the sake of our children.”

Christine Lenehan of Council for Disabled Children also recently shared her views on the reforms, 2 years on. She talks about her early career, and how she’s watched and been part of the journeys of disabled children from long stay hospitals into the community, “However, I believe that journey is not yet complete”

I can’t help feeling, from an organisation funded so heavily by government, that this statement from Christine is absolute b#**#%*$. Whose journey is she talking about? It sounds like she is talking about her own journey. This should not be about her or the organisation, and this is not a journey. This is an absolute nightmare in which families are stuck. They are not meandering along in any meaningful direction. They have been stuck on the latest ‘journey’ for 2 years. What examples are there of any other children other than those with SEND, who don’t start a journey in the autumn term and finish it at the end of a summer term. Then they start a different journey in the next autumn term, and so on. Children with SEND have no beginning and no end because they are on someone else’s journey. Usually a LA officer’s, inexperienced TA’s, or teacher’s, the course of which can change several times, causing a diversion and serious delays for the child whilst the adult gets off the ride.

Ms Lenehan goes on to say. “Looking ahead…….just because the journey of the SEND reforms has been difficult and challenging, don’t forget why we’re are doing it……..we will always be pushing, testing and challenging government….” The article isn’t clear how CDC are doing that. When I push, test and challenge LAs, Ofsted and DfE, I don’t get a knighthood. I get pushed back, tested and challenged.

Finally, (sorry this has been so long) and I think on a more positive note, someone in a Facebook group I’m a member of posted a link which really struck a chord, and put into words very nicely what I believe we should be doing when it comes to research and advocacy and generally educating people about SEND.

“If there’s someone that can speak to a lived experience that you cannot, do not take up that space.” Amani Al-Khatahtbeh

The subject is about diversity in Hollywood, but it can be applied to all situations where we don’t listen to the ones who have the lived experience. We should be giving the first person the floor and be reminded that they are the ones who can provide the most useful feedback: authentic, and undiluted by the journey!

*is it phenomenom or phenomena? Is there a consultant for this (can I afford their fees???)

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Outrage to action

I have been astonished by the reaction to my last couple of blogs: Legal Alien described how my son, Alfie had been prevented from having a part in his Y6 leaving assembly, and about how the secondary school he was meant to be going to had a habit of lining non-mobile pupils up in neat rows at playtime, with no interaction. Recollections was about how Alfie came home from his last day at primary school with a virtually empty leavers book. No memories, no future.

I feel these 2 blogs have really touched a nerve, and I think one of the reasons so many have commented and shared is that it’s something everyone can relate to; not just parents of kids with SEND. Teachers, parents and grandparents of kids without SEND, those who don’t have kids have been equally outraged about a disabled boy who has been ignored. About disabled kids who can’t speak or move, who have been left at playtime doing nothing. It’s easy to picture, and those who have an ounce of kindness would struggle not to feel sad doing so.

The thing is though, if I’d blogged about how I’d been stitched up at tribunal by an Educational Psychologist and a Physiotherapist, or how the LA didn’t follow directions from the judge, or how the LA have just removed the amount of 1:1 my son needs at school from his EHCP, not many people would be interested. Less would be outraged. Not because they don’t care, but because not many people know how the SEND system works, what the jargon means or that there is a ‘system’ in which parents have to jump through hoops to even enter sometimes. Through no fault of their own, they think children and young people with SEND go to a school of their parents’ choice, get the support they need, and it’s that simple. But it’s not!

What I hate about the SEND Minefield by Debs Asplands beautifully describes the issues parents of children with SEND face, and if you add these stresses on to the feelings parents have when their child is completely ignored at the end of their primary school years, the reality is pretty grim.

Local Authorities and schools have a legal duty to make sure what a child needs in order to learn and grow into a valued member of society is provided, but too often this doesn’t happen and some of the reasons are too complicated to explain. They are often too complicated for parents to challenge, and when a cash strapped LA pays for very expensive solicitors and barristers to make sure a parent has no chance of successfully challenging the injustice, the child suffers. The family suffers. Parents break up, brothers and sisters feel neglected, debts pile up to pay for legal help, mental health is affected, and the list goes on.  (Katherine Runswick-Cole talks here about the horrendous experiences parents have faced at tribunals.)

I’m currently in a position where I can access legal help to challenge injustice for Alfie’s education. I’ve not always been able to, and the last 2 tribunals broke us as a family. It’s so unfair that local authorities use tax payers money to fund (often disreputable solicitors and barristers just to ‘win’ against parents, with no regard for the child at the centre, and I believe LAs should also fund (using the same tax payers money) solicitors or barristers instructed by parents, to represent parents, to level the playing field.




I know this idea sounds unrealistic, and it is, because tribunals shouldn’t be like criminal courts, where barristers and judges talk about cross examination and examination in chief. [And a lot of the time, none of the tribunal panel or legal representatives will have even met the child being dissected!] There shouldn’t be solicitors and barristers in the tribunal room, but LAs will fight to the end and often the 11th hour just to deny the child his or her right to an education that will create opportunities for them to reach their potential. Not even exceed it. Just to not be forgotten and ignored.

I think everyone should be asking local authorities why they shell out so much on solicitors and barristers instead of investing the money in education, and if my petition reaches 10,000 signatures before December, the government will hopefully respond to my idea of making LAs fund the parents’ legal fees as well. Let’s face it, no one is going to agree to making LAs spend even more money they allegedly don’t have, but what the petition could do, is make people talk about the failings our children with SEND are having to deal with and hopefully do something about it instead of constantly sticking their heads in the sand, and waiting for things to bed in.

Please sign, and ask others to sign as well. You don’t have to be a parent of a child with SEND. Anyone with an ounce of kindness can sign.

Make Local Authorities fund legal representation for kids with special educational needs and disabilities to get a decent education.

Thank you.

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Well, yesterday was my son’s last day at primary school, and all the Y6 kids got a book in their leavers assembly to record their memories in.  

My son can’t read or write, so depends on his TA for everything.  

The kids all signed the book which was nice, and the family support workers Rachel and Kate wrote a lovely message, but apart from that, the rest of the book speaks volumes.  It shows that my son has no friends.  It also shows that the staff have made no effort to help him make friends.  He has left school with not one phone number or email address.  Not one.  

His teachers, teaching assistants, headteacher, office staff, dinner ladies haven’t written a message. I think this shows what they think of Alfie, but more importantly, it shows that no one has thought, or made the effort to take Alfie round school to get his book signed, which is most upsetting.  He can’t do this by himself.  He can’t do much by himself, and he’s completely dependent on someone else to create opportunities for him.  He’s been denied the opportunity to keep in touch with the kids from primary school, and I know there are some kids there who absolutely loved Alfie, and showed kindness and genuine respect for him.  I’m not going to try to understand why no-one thought to do this.  It’s completely unacceptable, but it goes on, clearly.  

Here are the highlights from my son’s leavers book. 

The most upsetting thing about that book, is this picture and caption on the first page.  Oh the double-whammy-negative-irony.  For kids like Alfie, it’s too easy for them to stand alone and often it’s not because it’s easy for them, it’s easier for the adults who should be doing everything to create opportunities.  I’d really love for my son to be part of a crowd, and decide for himself if he wants to just go with the flow, or be a pain in the arse like his mum, but I doubt he’ll ever be able to make that choice.  

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Legal Alien

Dear Ofsted

It’s almost the end of my son’s primary phase of education. He has no school to go to in September because he is disabled by the people who are meant to help him learn.

[The school’s mentioned in this post are not in Wigan]

The school we thought was the right one, and where my son had a place, has proved not to be the right school. At break times, the pupils in wheelchairs are lined up on the playground like cars on a forecourt, and left, very neatly in a row doing nothing and interacting with no-one. I saw this with my own eyes, and I also saw staff from a feeder primary leave 3 of their wheelchair dependent pupils in a lovely semicircle, unable to mobilise, on the playground, while they went inside for a brew. This was part of their transition to secondary school.

Another reason the school isn’t right, is because even when kids have a statement or EHCP with specified 1:1 written into it, the school don’t provide it. They say they don’t provide a named 1:1, but assure me the pupils who need 1:1 get it. I’m no mathematician, but if there are 10 kids in a class, with a teacher and 3 teaching assistants, and a child needs the toilet, that would potentially leave the teacher and 1 TA in the class. And whilst the pupil who needed the toilet has gone, with the 2 staff, another child needs some help from the TA, to turn a page in a book for example, that leaves no TA left to support the other 8 kids. And so on, and so on. There seems only one explanation for what happens if TAs are taken from the classroom to help a child: the other children don’t have support. They wait their turn to get help. They must be sitting waiting, doing nothing, because TAs cannot be in 2 places at the same time. This thing about not having ‘named’ 1:1s (which just means not having 1:1 all the time it’s needed) is bizarre. How can a TA feed 2 children at the same time? Does he/she have 2 pairs of hands? Can he/she help a child drink, at the same time as helping another child cut up his food? Can he/she spoon feed a child at the same time as stopping another one choking on the full sausage he’s put into his mouth and not chewed up properly? Can he/she take a child to the toilet when 2 other children are relying on her/him to feed them? The answer has to be no. But it must be happening, and each child who isn’t given the 1:1 support specified in their legal document is having to compromise like no other child of their own age without the same needs has to. My youngest son doesn’t have to wait to go to the toilet. At lunch time he gets his food and eats it and has time to play outside, just like the other kids. Why is it ok to expect the most vulnerable of our society’s children to wait unnecessarily to have their basic needs met, before they even begin to attempt to learn in a lesson?

At this right school, that’s now the wrong school, parents aren’t involved in setting targets in the IEP. The targets are set, and sent to parents. They can be reviewed at the annual review, the SENCO and head of year told me.

At this wrong school, after 4 transition sessions of 2 hours each, and no-one attempting to find out the practicalities of how my son eats and goes to the toilet (because the transition sessions were between 10am and 12pm, which didn’t coincide with lunchtime, or toilet time) the SENCO seemed surprised when we raised concerns about the lack of readiness for starting in September.

This isn’t a mainstream school. It’s a special needs school, rated outstanding by Ofsted. A school in which staff stand around chatting, eating bananas on the playground, while the Ford Fiestas are lined up quietly and neatly on the forecourt. Obviously they didn’t think anything was wrong, and presumably Ofsted would have seen that when they inspected, and they didn’t think it was wrong either. It kind of undermines the inspection system in my view. Well, actually no it doesn’t. The inspection system is what it is and doesn’t need this to undermine it. The people inspecting clearly think it’s ok for non mobile, totally dependent kids to be lined up like that. No one trying to engage these kids to play a game, not talking, not singing, not pushing them around the playground to see what the other kids are up to and joining in. So as long as you have people rating a school outstanding, based on the things I saw in 2 visits, it has to be happening all over, and not just in this school. It must be, and this is why I’m not submitting a complaint to you. You cannot change the SEND landscape by inspecting schools in the way you do. Your inspectors need training. You need training from parents who are experiencing these unacceptable, disgraceful practices and you need to understand why it isn’t ok to not involve parents in setting targets, and why it’s not ok to abandon profoundly physically and learning disabled children in a playground unattended and uncared about.

Yesterday, my son was in his end of Y6 performance. ‘Pirates of the curry bean’. For months he’s been watching different versions on YouTube, reciting lines in the middle of the night when he wakes up all excited. But he didn’t have a part, because they (the school) couldn’t get him on the stage (in his wheelchair). When we bought our tickets, the TA was shocked and ‘worried we’d be disappointed’. She wasn’t wrong. I was utterly heartbroken and livid at her, at the teacher, at the headteacher. My son never disappoints me, ever. My son said ‘welcome to the show’ at the beginning, and ‘thanks for coming’ at the end. He didn’t get a mention and an applause at the end, when each of the actors were called out for their part in the production. My husband told me this, because I had to leave the room shortly after 2 of the children lifted a wheelbarrow on to the stage and playfully pushed each other around on stage in it, talking about cockles and mussels. My immediate thought when I saw this (which was funny and the children were amazing!) was how the teachers who’d organised the production found it more important to have the wheelbarrow scene in than have my son on stage. I also remembered a photo I’d seen some time ago, of Tanni Grey-Thompson sat in a wheelchair somewhere in London, campaigning for better wheelchair services.



My husband attempted to explain why what happened last night was unacceptable, and the teacher told him she hadn’t thought of getting a ramp so he could access the stage. I don’t need to say anything more on that. Do I? I really hope you can understand the severity of this without me spelling it out to you.

Again, I’m not going to make a formal complaint.

I’m not making formal complaints about these two schools because it will achieve nothing. Selfishly, I’ll breathe a sigh of relief tomorrow, when my son gets home at 3.30. It is selfish, because I know other children will receive the same treatment in the future, but I really don’t believe I can make any difference whatsoever. The only thing it would do is make me ill.
I think the word I want is ‘systemic’. I know many parents contact you with similar and often worse stories of discrimination against disabled children in our schools, and I suppose what I’m asking is that you do something about it. My son will be at home with me in September, and I know he’ll be safe and happy, but he should be at school, making friends, experiencing the world and I will never come to terms with the reason he isn’t. There are many children who can’t stay at home because the school they thought was suitable isn’t. They have to attend schools which have such low expectations and aspirations for their futures, and it’s frightening.

The origin of the word ‘alien’ is:

Middle English: via Old French from Latin alienus ‘belonging to another’, from alius ‘other’.

My legal alien, an 11 year old boy who has every right to be at school and doing what he wants to do, but can’t because he will always be seen as no-one’s responsibility. An ‘other’.


When will Ofsted see that children like my son are being denied so much and having their futures taken from them?

Yours sincerely

Diane Kay

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Why did I dob Baker Small to the Solicitors Regulation Authority?

3 things have happened in the space of 7 days that have made me livid, so I had no option but to complain about BS:

1) Last week, a man came to my house to demo a wheelchair adapted vehicle for my son. He was from a very successful firm who specialise in vehicle conversions for physically disabled people (my son is a wheelchair user). Long story short I had to report him to the police because he accidentally showed what I thought was a naked disabled girl on his computer instead of a rear telescopic ramp system. The police have assured me it wasn’t a disabled girl, but the beginning of a porn film involving an ‘oriental’ young woman. The police are confident his taste in porn is adults only, and I’m still waiting for an apology from the company, and details of how the guy has been disciplined. Apparently he needs to watch porn because his job takes him away from home a lot. My heart bleeds.

I’d like the man to be sacked. Bit harsh you might think, but if he needs porn to get through his days, he’s not the kind of person I trust to visit potentially vulnerable people. Also, he compromised me and my family. The lack of any apology from the company suggests they are hoping I will just forget about it, but why should I? The way I felt, thinking he had photos of children (disabled and naked) just made me sick, and it made me want to go and collect both my children from school and lock ourselves away for the rest of our lives. When I found out it was an adult, those feelings didn’t leave me, because it was a stark moment of reality – my son and children like him are not safe.

2) When I saw Baker Small’s first couple of tweets I was livid. A couple of years ago I had a brief Twitter convo with him and he was comparing a child’s provision to cars. Enough said. Probably a Jeremy Clarkson fan. Anyway, admittedly I was a bit childish in one of my tweets to him on Saturday night, when I asked him if he was still breastfed, but I was gobsmacked at how little he seemed to care about the impact his comments were having, like a young child who can only but speak the truth because they have no filter. And although I knew to be wary of him, it clicked on Saturday night that he thought he was completely untouchable. Just like LA staff I have dealt with do. Somehow they know they can do or say whatever they want, and there is no comeback because the only option for parents is to go to the tribunal. The maladministration dished out daily by LAs goes unchallenged because a body such as the LGO (Local Government Ombudsman) won’t touch it because there is another means of action i.e the tribunal, and the tribunal are not interested in the shenanigans of LAs, just the decision. They’ve got us all ways, so when BS started shooting his mouth off, I had to report him. Just like the fella who thinks its ok to expose me and my family to his ‘medicinal’ porn. I’ve had enough.

3) This happened today, but has been on my mind for the last couple of weeks: 5 parents and I (all from Wigan) met with the Chief Executive, Director of Childrens Services, and two Assistant Directors from Social care and Education, at the Town Hall. Almost 2 years to the day, after we appeared on BBC Regional news telling our stories of how our disabled children had been abused, mistreated & neglected in school. The Chief Executive was given the right to reply, and she sat in the BBC studio and told viewers we were wrong, that judges had cleared the council of any fault. Utter BS. So, 2 years on, we met with them to present this report:

No Candour, No trust, No closure, No learning.

I think the findings are scathing. I think we have been treated like dirt, and when the Chief Executive was asked today if she’d go on TV and publicly apologise to us, she declined. You see it’s still about the reputation of the council. It doesn’t matter that 6 families were portrayed as troublemakers and difficult just because Wigan Council didn’t know their arses from their elbows, just as long as the public don’t know the truth.

Well this is the truth:

• SEND law is not adhered to in LAs

• No one is ever accountable

• Parents who challenge are labelled ‘difficult’ or ‘never satisfied’

• LA staff show their dislike of parents

• It’s personal

• The child ‘disappears’

• The gloves come off

• It’s about ‘winning’ the tribunal

• LAs use tax-payers money to fund external solicitors and barristers (why the hell can’t their in house solicitors do it? More to the point why can’t a LA officer present the case at tribunal?)

• The tribunal becomes focussed on legal rules and legal point scoring so god help an unrepresented parent. Provision for the child is less important.

• The child loses out

• The family breaks down

• Years of children’s lives are being lost whilst this goes on; time they’ll never get back.

• What could the money LAs use to fund legal representation be better spent on? It’s not rocket science.

I guess that’s it. I’ve had enough of being treated like an unreasonable consumer with faulty goods that no one wants. I’ve had enough of people making a shed load of money at the expense of some little kid who deserves and is entitled to the same opportunities as his/her peers. I’ve had enough of the way parents’ battles have become the norm, something to be expected, par for the course. Parents of children with no SEND do not have to fight for basic provision to ensure their child is in a position ready to learn, but our kids have to feel grateful for someone to take them to the toilet, or let them go on a school trip. Enough’s enough.

I hope Baker Small can tell some more truths now, about the real conversations he and LAs are having about parents, and how they prepare for their ‘win at all costs’ tribunal. It’s time for change and I’m sad that it’s taken the stupidity of a solicitor to get the issues faced by parents of children with SEND being discussed seriously. But they are being talked about now so let’s hope we get some action!

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Stress in carers of disabled people

I’d like to collect the research on stress in carers or ‘caregivers’ and see how much of it attributes the stress to  the way we are treated by public bodies. A lot of the small amount I’ve read seems to confirm that carers need a break, they need support etc and that the psychological effects are significant.

I did a very brief list in my head, of the last 11 years, just jotting down the major stress points. The first 18 months were horrendous, and scoring out of 10, my son and I both had top marks for ‘difficulty to care for’ and stress levels.

But as I went through the years in my head, I realised that I couldn’t have 10 as the maximum score, because there have been times when I’ve felt more stressed than I did back at year 1, when I thought things were the worst they could be.

I couldn’t draw it, so I’ve put it into a chart (didn’t really know what I was doing, and some of the figures are in ££s, which I can’t suss out how to change, but never mind. Maybe it’s a sign that all things equate to ££ in this game??)

Just for clarity, I consider zero to be what I’d have scored with my second child, but that’s not to say I think anyone having a non disabled child has it easy.  Each score has a very wide range from start to finish!

The majority of the increases in my stress, haven’t been as a result of my son’s ‘condition’, health or illness; they’ve been because of unavoidable interactions with public bodies.  Later on in the expedition, Alfie became very difficult to care for, because of his ‘behaviour’, which increased my stress levels, and which we now know was as a result of the ‘behaviour’ of public bodies.  

The upshot, is that at a time when my son is really coming into his own, (and yes, he is still hard work to care for) and his care needs are quite stable, my stress levels don’t seem to be adapting to the positive experiences his progress brings.  I’m in the mysterious world of EHCP land at the moment, and this is what is causing the stress I’m currently experiencing.   I shouldn’t be experiencing this stress, because I’ve got support, I have respite, I’m getting more sleep than I’ve had in the last 10 years.  Public bodies who treat parents like me with contempt, flout the law, bend the rules, move the goalposts are adding to the stress we accept as normal (when it really is far from normal!) and often adapt to because it’s stable and we’ve learned to cope at this level (even though it could be much better) and they are killing us.  Cutting our life expectancy by years.  

Research should be done into why public bodies are being allowed to kill unpaid, (usually) family carers.  Many carers know the system inside out, but we are in a no win situation which makes us powerless.  Public bodies rely on parents/carers giving up, and there are times when I feel like doing, but I never will, because I couldn’t live with myself if I did.  Research should be done into why public bodies are allowed to get away with what they do, and I really mean local authorities, although other public bodies are just as bad.  Again, the disabled person is portrayed as the ‘problem’ and that’s rubbish.  It’s the people behind the services who are the problem.  The cuts don’t help, but let’s call a spade a spade, there are just some horrible people who find it easy to make things as difficult as possible for others, and that kind of attitude is never changed by funding.  Perhaps the research would cover the thought processes of such people.  

Is anyone interested in conducting this research?  

Please let me know.  

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Ever Decreasing Circles

I read the article by Laura McInerney in the Guardian about the high percentage of excluded pupils who are also disabled and/or have Special Educational Needs (SEN), and the difference in exclusion rates between mainstream and special needs schools, and due to it being summer holidays I didn’t manage to share my thoughts before the newspaper closed the article for comments. I really want to though because so many of the comments remind me of the ones left for the Secret Teacher blog piece from May this year called “I’m all for inclusion in principle, but it doesn’t always work”.  (I wrote about this here)

The particular comments which spring to mind from Laura’s article and the secret teacher piece are those which generally blame the child, so my first thought is that no amount of funding can change things when people (including teachers, headteachers and other participants in the ‘SEND system’) continue to demonise children who don’t fit neatly into the stereotypical ‘Special Needs Child’ box. It’s too easy, and dangerous to have a ‘mainstream’ vs ‘special needs’ culture, because it allows views of those with the potential to discriminate to go unchallenged, and let’s be straight, it’s discrimination when disabled children or children with SEN are treated like they don’t belong in a mainstream setting, just because the things that disable a child or prevent a child from learning are not being addressed. I think by always talking about funding when highlighting the numerous barriers faced by pupils with SEND just keeps the fire burning and we will keep on going around in circles.

As I understand it, mainstream schools are expected to fund the first £6k of a pupil’s SEN provision. What happens then is anyone’s guess in many schools, but what should be happening, either alongside the consumption of this £6k ‘pot’, or after it’s been used up (which is usually far too late), is a thing called statutory assessment.
1. Is this a fluid process where everyone is proactively preventing failure and planning for success by requesting/undertaking a statutory assessment? Not always.

Shift over to special schools, where funding is different, and pupils must have (had) a statement or be attending for the purposes of being assessed. It might have been that the special needs school received a fixed amount per place, which was there whether a child filled that place or not. It could be that staff who work in special schools have 2 pairs of hands, and can feed, hold resources, take to toilet, clean and dress 2 pupils at the same time, as is my theory for why 1:1 support often ‘isn’t necessary’ in special schools. This would be a major saving of funds.
2. Did/do special school pupils all have statements/EHCPs? No.

So if pupils (in any type of school) don’t have statements or EHCPs, which should detail specifically what the childs’ needs are and what provision is required, the funding element is irrelevant because at the point of ignoring and consequently not acting on a child’s SEN, that child is not receiving what he or she needs, to be on an equal footing. And equal footing doesn’t mean being the same, it means having the right support, when they need it, to make the most of the opportunities available to other children.

3. What is the reason for 1 and 2 above ie. pupils not being assessed or not having statements/EHCPs, other than not having SEN? Because it is allowed to go on, repeatedly, even though parents complain and appeal. Nothing is done about it.

If discriminatory and stereotypical views are allowed to prevail about where a disabled child/child with SEN ‘belongs’, (and in my view the slant of people with such generalised views is usually towards special schools), then views of what kind of ‘behaviour’ is appropriate must also be swishing round in there too. For example, a child who ‘makes noises’ is not going to be seen as being ‘disruptive’ in a class of, say, 10 children, 5 of whom also ‘make noises’. ‘It’s just what ‘they’ do’. However, in a class of 30, one child ‘making noises’ might be singled out as being disruptive, because that isn’t behaviour displayed by the majority (especially if the view of the school is that a child with those kinds of behaviours doesn’t belong in a mainstream school).

Ofsted don’t help either. Inspectors are not always highly skilled in assessing the area of SEN. In a special needs school, pupils could be sat around smoking pot and it would pass as outstanding because the kids were all very calm and relaxed. A disabled adult once told me he used to go to the cinema and he was able to just go in to see whichever film he wanted to, without paying, because no-one ever approached him for his ticket. Same goes for Ofsted. Because inspectors often don’t know much about equality duties, stuff just happens, and it goes unchallenged.

The bottom line for me is that until we get some accountability, which doesn’t involve parents having to go to a tribunal or initiating a judicial review, nothing will change. If LAs are not penalised for failing our children, they will not bother to assess. They won’t bother to issue a statement or EHCP. They won’t bother to specify provision. They won’t bother to ensure the provision is received. They won’t review the provision. This increases the chance of a child being ‘disruptive’, and excluded, and everyone breathes a sigh of relief because the opportunity to speak up on behalf of a vulnerable child who could lose someone their job has passed. ‘Behaviour’ can be in many forms, and not all behaviour requires changing. Often, dangerous behaviour is simply because needs are not being met, but there are a number of steps that can be taken to prevent behaviour which becomes so distressing for the child that it ends up in exclusion, and they don’t involve funding: Tolerance, compassion, empathy, advocacy, friendship, respect. These things can’t be funded. People can’t be forced to be tolerant for example, but they can be held to account if they aren’t.

This is not about money and I’m worried the issue of ‘inclusion’ is becoming far more complicated than it needs to be; it’s about guts, courage and fearlessness, and I’m not talking about the child. If every parent, teacher, SENCO,headteacher, journalist, lawyer, came together collectively to stop what is I believe an out of hand situation, we might have a better chance of creating some new statistics.

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