Posts Tagged With: Disability

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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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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Can he self-propel? Hell yeah!!!

In my ‘About’ page I explain briefly why I’m writing this blog. Thinking about it now, I’m writing it because I know about 5 people read it and some show their appreciation or sympathy by retweeting! Which is more than can be said for communications I direct at Wigan Council, who, despite promising things will change following an independent panel finding them to be a bit shoddy, don’t really seem to be cottoning on.

During the stage 3 panel review into the way allegations we made against staff who worked with my son were handled, it became apparent that the Council were so afraid of me, that they couldn’t do their jobs properly:

“When things don’t go as they want, there are emails sent to as many ppl as possible and ppl were wary of and couldn’t do their job as they should as were thinking of ways of working to avoid conflict. Ppl need to be aware that’s how they come across.”

Of course, the investigating officer could provide no evidence of my menacing behaviour, so that theory was laid to rest quite early in the review.

Katherine Runswick-Cole wrote a piece for the #107days campaign, called The #Motherblame Game and it hits home how, regardless of our situation, parents (specifically mothers in Katherine’s piece) are being blamed left right and centre for a system which is failing to provide an adequate, never mind good, level of service to our disabled kids. If you’re not in denial, you’re inconsiderate. Inconsiderate to the feelings of council staff who have an infinite length of rope with which to save (or hang) themselves, just because when parents complain about poor service, it’s us who are portrayed as the difficult ones.

In December 2014, I informed the council that my son’s seat on his stairlift was too small. Almost 5 months later, my son is still far too big for the stairlift chair (notice how I’ve shifted the blame onto a 10 year old. Even better, cos he hasn’t got the communication ability to complain!!!) and quite soon, he will quite possibly slip off it, mid staircase, and be strangled by the harness. But I won’t complain, because that would be me, just being difficult. Never satisfied, that’s me.

Anyway, Wigan Council, I’ve been in touch with an old mate of Elvis, who put me in touch with a bloke who still has a rocket seat from the 1960s. He says he can have it shipped over in less than 4 months, so don’t bother with the stairlift, this looks a bit more promising.


Photo courtesy of :

Flying Into The Future – The most comprehensive website on Rocket Belts and Jet Packs

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Perks of being a parent governor

Following on from my earlier post about Wigan council claiming that a group of families’ desire to raise awareness of failings in safeguarding procedures was politically motivated, I’m reminded of a couple of incidents during my short lived term as a parent governor at Wood Fold Primary School.

The first one happened during a full governing body meeting in an autumn term, where an item on the agenda was to decide who had what roles on the governing body.  As I had quite a bit of experience of SEN, and I was an Advice Line Volunteer for IPSEA ( I expressed an interest in being the governor for SEN.  (This is how it went, you said what you fancied, and if the person who was already doing it didn’t want to do it any more, the job was yours -skills analysis was to be a thing of the future). The parent governor who had been doing the SEN governor role for the previous year said she wanted to carry on as she’d learned a lot and was enjoying it.  She had no SEN experience as far as I knew. So I said ok, what about the governor for equality, that sounds just up my street? Again, considering I have the experience, certainly in the area of disability, but a passion for equality generally, it appealed to me.  It was then, that one of the other governors asked ‘could it not be seen as a conflict of interest?’ [because you have a disabled son].  I said I believed equality was everyone’s responsibility.  Later, when I thought about it more, I realised what she meant:  the risk of ensuring the school met its equality duties to pupils, staff and the general community meant that people protected by the Equality Act 2010 might just be treated fairly and without discrimination.  I can see now how that can be considered as a conflict of interest.  Not.

The second incident happened in July 2013, at the governing body meeting where I am claimed to have brought the school into disrepute.  (That’s for another time.) The LA had sent a memo out to all governors in Wigan advising them of the new SEN processes that were being followed from that September, as Wigan was a pathfinder council.  I’d queried the information provided by the pathfinder Lead, that children who didn’t require a certain level of funding or one to one hours would have their statements ceased to be maintained, and I’d received a bizarre response, expressing delight that I agreed with the new process!!  I raised concerns with the LA governor services that governors were being given duff information, and received a response along the lines of ‘not my problem’.  So, back to the governing body meeting, I explained my concern that children would slip through the net and as a governing body we could be failing in our duty towards children with SEN if a statement was ceased for the reasons being spouted.  At this point, the Chair of Governors asked me “so how does this affect you?”, seemingly implying that my son would be adversely affected by this illegal practice and that was my main concern.

What I can’t get my head around is why people are so despicable in thinking that a disabled child might receive something ‘better’ or ‘more’ than a child who doesn’t need extra support, and specifically relating to my position as a governor, how I could somehow get ‘perks’ that would advantage my son so much that it would disadvantage the other children.

More generally though, why is it that such unpleasant cynicism can be used to dismiss any form of positive action to ensure disabled children are not harmed, or that they receive the education to which they are entitled to and have a right to?  Has equality really moved forward?

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