Posts Tagged With: SEN

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.

http://www.bbc.co.uk/news/uk-33595627

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http://www.rightwheelchair.org.uk

 

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’.

http://www.oxforddictionaries.com/definition/english/alien

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’.

image

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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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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PCFs: don’t believe the hype

The DfE published its final, definitely, positively, are you sure?, absolutely last one, “The Special Educational Needs and Disability Pathfinder Programme Evaluation: Final Impact Research Report July 2015” recently.

It claimed to have listened to over 600 families who have been involved in trialling the reforms, proposed (and implemented, before the final impact was known, clearly) as part of what eventually became the Children & Families Act 2014. It’s not clear though, how these families came to be the chosen ones. I’m sure it must have been cherry picking season in Wigan at the time though.

I’ve tweeted quite a bit about how Wigan Council actively prevented my involvement in the pathfinder work. The council, and some parent/carers in Wigan also actively prevented a Parent Carer Forum (PCF) being set up. (There is no PCF in Wigan, not even a very small one).

If you read the SEND Code of Practice, PCFs are mentioned repeatedly, as a way of obtaining views of parents and to ensure they are involved in decisions about services. There is even an organisation dedicated to all things PCF: The NNPCF (National Network of Parent Carer Forums), which is funded by central government. Contact a Family: also support PCFs, by administering a yearly grant to every PCF in England. The £15,000 grant, which is funded by the DfE, is to “strengthen parent carer forums, so that parents can participate in planning and making decisions about services in the area.”

I’ve stopped asking now, because it is virtually impossible to get information from Wigan Council, but a couple of years ago, when Contact a Family were also concerned about Wigan’s lack of PCF (even though they were still giving the council the grant money), I was told it was better it goes somewhere, instead of nowhere.

What I do know though, is that Wigan Council have a ‘Data Hub’, which is another title for a children’s disability register, and if you’re a member of the Data Hub (there is no membership scheme, and it is simply a list of families of disabled children in Wigan), you’re automatically a member of the PCF (which doesn’t exist, because it’s the Data Hub, which is essentially a children’s disability register, not a PCF, because it’s just a list of names!!).

Quite new on the scene, is Wigan’s Parent Participation Development Group, which is hosted by a charity called Embrace, and has a brand/logo of ‘Up’ which stands for Understanding Participation.

I think (but there’s nothing to confirm it) this is now Wigan’s PCF, but as the logo suggests, participation is still a difficult concept and I’m not sure when, and how, completion of the ‘understanding’ bit will conclude, and/or its success will be measured. A recent email from the Parent Participation Co-Ordinator, was a flyer about a local country show*, so I reckon the group must be at level one, module A of the journey to understand participation :

Module A- Understanding Participation – what I participated in this summer.

• In pairs, ask your partner what they participated in this summer. How did it make them feel? What did they learn from it? How would they do it better next time?

Example: This summer I participated in the country show. I got as far as the road, but then the wheelchair got stuck in the cow pats and had to be excavated by a tractor.

• Each pair will then feed back to the rest of the group on behalf of their partner.

• On completion of this module, learners can move on to Module B:

Module B – Understanding Participation: Have you really understood it?


• No one will pass this module, so just return to Module A, this time titled: ‘Understanding Participation: What I participated in this Christmas.’

 

Nick Peacey’s discussion paper ‘A transformation or an opportunity lost’, published for RISE (Research and Information on State Education) also mentions PCFs “Encouragingly, there are Parent Carer Forums in every local authority to support such collaborative development. But the Forums need LA staff to talk to and the latest information suggests that cuts may be making this less easy (NNPCF, 2015). But the model has potential: it could allow, for example, comparative study of provision, outcomes, admissions and exclusions of pupils with SEND across a group of LAs working with parents’ forums and, ideally, disabled student groups” and I think this illustrates the status PCFs seem to have when reports/papers/survey results are published about the SEND reforms. PCFs do not represent parents’ and disabled children/young peoples’ views. They may represent some of those views, but in my opinion, PCFs are being used by the DfE to weaken parents/children/young people’s views because unless you are a ‘member’ of one, your voice is not heard.

I recently asked for more information  from a Wigan councillor, who holds the portfolio for children and young people, about a project to improve the statutory assessment process, asking if parents had been involved. Her response was that she wasn’t sure, and some of the professionals involved have disabled children, but in any case I am always welcome to be involved in the Parent Participation Development Group (the set up I described earlier). Well thanks for that, but I already have a pretty good understanding of what participation should be, and it isn’t the Wigan way, that’s for sure. More importantly though, parents should not be expected to join a particular group just to have their voice heard. Yes, a PCF could be a good vehicle for obtaining views, but not being a member of a PCF (or any other set up claiming to be a PCF) should not exclude you from having your voice heard.

*The flyer advertising the country show was emailed out to parents who are on the ‘Data Hub’ mailing list. What it has to do with participation in the sense of collaboration and strategic input I do not know, but the great thing is, the accessibility at the show for disabled visitors is not even geared towards participation in the sense of simply attending a country show as the website describes: “Disabled Access – Please note that the show is held on grasslands.” I guess that means wheelchairs may get stuck in the muck. So, is this what the Parent Participation Co-Ordinator is being paid for? If so I’d love to know where the funding comes from for a role which seems to be more of an announcer of activities not everyone can participate in.

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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 (https://www.ipsea.org.uk) 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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