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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Love Pies, hate disablism!

There was a protest in town yesterday; an anti-immigration march by The National Front and a counter march by anti-fascists. I love this person’s simple, but effective message:

 

image

 

I remember being with the kids in a quaint little patisserie in town recently, buying some of the local pastry based delicacies, and a woman, with a man of a similar age who I think was her husband, was in the queue next to us. Alfie began to flirt: he reached out, tugged gently at her coat sleeve, tried to get in her handbag, asked what her name was, kissed her hand. It was all very pleasant then she said to me “aw, ent thee appy” (translation: aw, aren’t they (disabled people) happy).

Loads of you will have had these experiences which make your heart sink. The thing is, she was quite frail, and Alfie liked her, and he asked her “what’s your friend’s name?”  She didn’t hear/understand, so I said to her friend (husband) “he’s asking what your name is”, but before the man could speak, the woman told us. “His name’s Jim. He’s not from round here”, so I imagined a scenario where they might have met during the war, when he’d escaped Germany, and he didn’t speak good English, or something like that, but no, she continued to inform me “he’s from Tyldesley.”

I couldn’t bring myself to say anything, (Alfie was pick pocketing someone else at this point) because I realised she wouldn’t have understood why I was offended by her comment. I felt a bit sorry for her, and it was one of those ‘choose your battles’ moments. We were hungry for our pies, and I felt hypocritical because I always bang on about how we should all defend equality, but she was a nice person who was actually not bothered that Alfie had drooled on her hand when he kissed her. She wasn’t bothered that he was probably groping her in unusual places from his wheelchair seated position, and she didn’t appear to be in a position of authority or responsibility which could influence the local authority’s actions under the Equality Act 2010. Unlike the leader of Wigan council, Peter Smith (Lord Smith of Leigh).

Last night, I looked on Twitter to see if the leader had commented on the anti-immigration protest in town yesterday. There was no mention of immigration or the protest on his Twitter feed, but he had tweeted this a few weeks ago:

“@Lord_PeterSmith: Gt visit to Hunter Lodge fantastic work with challenging but rewarding people. Really supportive & caring staff! Thanks for invite & lunch.”

Guessing who these ‘challenging but rewarding people’ probably were, I googled ‘Hunter Lodge’…….

“Hunter Lodge in Marsh Green, Wigan provides services that meet the needs of people who have a physical disability, a sensory impairment, or a brain injury.
It offers a friendly, relaxed environment, where staff develop a programme with each member, which includes access to further education, community mapping, social and cultural activities and work-based tasks.”

http://www.wigan.gov.uk/Docs/PDF/Resident/Health-Social-Care/Factsheets/HunterLodgeDec11.pdf

So the leader of Wigan Council thinks disabled people are there to reward the staff (presumably being paid) who support them? And as if that isn’t enough, the disabled person quite possibly pays for the privilege of making others* feel good about themselves? This confirms to me that the pie shop woman’s comment was totally to be expected. When we have people hanging around in parliament, and leading councils, who believe disabled people are there to make others feel good, what hope is there of disabled people ever being seen as equal in value? If people in these positions are consistently allowed to get away with comments like these, how can anyone expect regular people on the streets to treat disabled people with respect?

Apparently Lord Smith also welcomes refugees, as long as other towns take their fair share. Maybe if they were disabled refugees, there’d be more of a feel good factor about it???

*I’m not suggesting staff at Hunter Lodge think this way.

 

 

 

 

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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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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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To laugh or cry

Today is significant for more than one reason:

My boys are going to the summer fair at their new school, where I suspect they might buy something for their Grandad Michael’s birthday, which is today.  Happy Birthday!!

Also today, in 1994, my younger brother, who was 17, died of leukaemia.

Paul Guy

image

 

Today also marks the day Connor Sparrowhawk died, in completely different circumstances.  Connor (aka LB) drowned in an NHS hospital because he had a seizure and was having a bath unsupervised.      From Connor’s death, a few campaigns have been born, which have resulted in increased awareness of the injustice dished out to learning disabled people and their families, and the lack of importance placed on the voices of both the learning disabled person and their family.  Please read and watch the film about Connor here #107days . So funny but sad.

Sara, Connor’s mum reckons it’s a wild dream to imagine a day when learning disabled people are just seen as the same as anyone else, so much so that we wouldn’t need to refer to people as learning disabled.  At this moment in time, I agree.  I think we are crazy to think that our ‘learning disabled’ people are close to being respected and valued equally, and this feeling is partly to do with the despondency I am feeling right now.  A despondency which is overshadowing a brand new chapter for my son, in a school which is refreshingly transparent and down to earth, with staff who call a spade a spade, and above all show compassion and a reluctance to fit my square son into a round hole.

I attended my sons disability discrimination hearing a few weeks ago, and the decision from the panel was heartbreaking to say the least.  My son’s treatment by staff at his previous school was not discriminatory, according to the panel.  The school has an outstanding rating for goodness sake.  How can an outstanding school possibly use discriminatory practices??? (They also said in so many words)

When I read the decision, I wasn’t heartbroken because I’d ‘lost’ the appeal.  I was heartbroken because it was clear from reading what I did that the panel do not consider my son to be human, and there are two particular points which make me think this.

1. The panel say my son wasn’t discriminated against when his TAs chat, in his presence, about whether it’s been ‘hard to entertain him’.  The reason the panel give, is that my son showed no distress at this comment. (Here is the audio clip entertaining a disabled child)

So, if a person being discriminated against cannot, by virtue of their learning disabilities, recognise that they are being discriminated against, show distress about it, and/or voice their concerns, is it ok to just allow it to continue???!!! Where would this end? This says to me “as long as someone doesn’t know, or can’t protest, it’s ok to do it” and I don’t need to say any more about that.

2. The panel say I have exaggerated the distress my son was experiencing when he was forced to go outside for 20 minutes, against his wishes, and without a coat on a day with a recorded temperature of 9 degrees.  (Here is the audio clip Playtime distress ) .  Bear in mind this is only 6 minutes of the full 20 minutes of distress.

I presume the panel listened to the same recording as everyone else, so it follows that they do not believe my son was in distress, or the level of distress isn’t serious enough to take action.

I can’t help thinking that if a non learning disabled child had been in that level of distress, he or she would have been able to do something about it and each and every adult who witnessed it would have been extremely concerned at the level of distress the child was in.  But what’s more, going off what the panel think in point one, that my son wasn’t distressed by the way he was spoken about, and conversely, how distraught he was in this point, what does it take for a child with my son’s level of need to be treated like a human being??  There is only one thing that can explain these 2 perverse views, and that is my son is somehow considered incapable of feeling, therefore cannot be human.

What does it take for people to stop defending the actions and protecting the reputations of large organisations?  In my experience, they are more than capable of doing it for themselves, so why not concentrate efforts on protecting the child?

I think we can achieve the goal of removing the gulf that currently divides learning and non-learning disabled people, but it needs us all to realise that the kind of treatment my son has experienced, and the neglect that caused Connor’s death is just the tip of the iceberg.

Parents and families are still seen as ‘amateurs’, ‘trouble makers’, ‘complainers’, but I tell you something, you’d have a far bigger mess on your hands without us.

 

for Paul Guy and Connor Sparrowhawk who both died on 4th July.

Paul Guy in his Iron Maiden phase.

Paul Guy in his Iron Maiden phase.

LB

LB

 

 

 

 

 

 

 

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Creation of Monsters

I can’t really think of any vaguely amusing spin on this blog today. I try to add some humour in my blogs as a self preservation thing; “if you don’t laugh you’ll cry” etc, etc, but this one is different. It’s about demonising disabled children, and I just can’t think of anything funny which would decrease the pain I feel when I experience first hand, or when I read about this practice which is often being disguised as ‘Inclusion’.
These monsters, who are being created mostly, in my opinion, to relieve people of their duty to do their jobs, include:

1. My son

2. Chris, a young man with autism from Wigan, who is still being abused in an institution that can’t meet his needs, and denying his family access to visit.
Bring Chris Home Petition

3. The child with Down Syndrome, featured in the ‘Secret Teacher’ article in the Guardian yesterday Inclusion but not at any cost

I had my son’s SEN tribunal hearing on Monday, and I’m not sure how it went really. The sad thing is that what I am asking for mostly cost nothing, and if it does, could have been provided to at least a hundred kids by now, and counting, with the money being wasted on a barrister to represent the LA. (But that’s another story).

When I reflected on the hearing on the train going home, what struck me was that no-one in the room had anything good to say about my son. Seriously, not one person needed, or wanted to know what my son was really like: how decisive he is, how strong willed and funny he is, how gentle and immature he is, what his goals are, how high his expectations are, what his likes and dislikes are, what kind of people he responds well to, and more.

The focus of the LA was to describe a 10 year old boy, who has been out of school for over a year because of the way he was treated in his former school, in such a way that makes him not human. He was the ‘problem’ that needed to be resolved, and the LA, including witnesses from the NHS physiotherapy service did nothing to highlight the failings of the provision which causes my son’s ‘behaviour’. No, the Educational Psychologist, who recommended ‘Co-Operative Learning’ to the former school, which keenly sent all staff on training in its use, hasn’t challenged why it was never used to help all children’s participation in class. No, the Physiotherapist or OT have never challenged the school on why my son was left in his wheelchair all day with no opportunities for a change of position, as per their own recommendations. Yet the Ed Psych, out of the blue, provides a report which suggests other options might include various special needs schools. And the Physiotherapist and OT remain silent on the non-use of equipment they provided, and the lack of any opportunities for my son to have a change of position. So by these people keeping schtum, my son is allowed to be demonised. His behaviour is just ‘how he is’. WRONG – my son’s ‘behaviour’ reflects other people’s skill, knowledge and in every case, their compassion, and if these are missing, what hope does he have now, or in the future of being seen as just another person, in society, in his community, who is worth just the same as everyone else?

Chris, the young man from Wigan who is currently in an ATU that has been found to have abused him, has autism. His needs are not being met, but instead of allowing his family to take him home, where, with professional help, they can support him to live a good life, they are all being subjected to an horrific nightmare. No, Chris is dangerous. He’s violent. No bloody wonder!! Chris is in hell.

I was saying to someone the other day that what has happened to Chris, could so easily happen to my son, and thousands more, because our kids are not in control of their behaviour. Their behaviour is caused by a lack of skill and understanding of how to meet a child’s needs. Not deliberate, but as a child develops and learns more, his responses change and his needs are constantly changing. It’s also caused by a lack of wanting to meet those needs too. If someone believes a child should be in a special school and not in a mainstream school, the needs which are somehow (and inappropriately) being seen to support this child going to a special school, could easily escalate if the people responsible for meeting these needs don’t believe it is their job to meet them. When this happens, there is a fine line which can become impossible to reverse back over, once a child is not being listened to. Decisions are being made based on behaviour due to unmet needs, the action plan makes the behaviour worse, and so on.

The ‘Secret Teacher’ blog in the Guardian yesterday made my stomach sink. Worryingly, with a whistleblowing system that is not fit for purpose, and a funding system that doesn’t fund, I suspect that this is the view of many teachers out there.

I have to say, whenever I read the word ‘integration’ in anything related to disabled (children or adults), I cannot agree with anything the writer says, because I’ve made my mind up that this person is someone who sees disabled people as add-ons who don’t really belong, and who are perhaps being over ambitious expecting to participate in life. Integration was a word just fizzling out of use when I began having to fight for my son’s  ‘inclusion’ and I thought that was a good thing, but clearly people still use it, as does the Secret Teacher.

I now hate the word ‘inclusion’ too. Why are we giving society permission to include a person in life or not? Who the hell are we to say who can and can’t be included?

The secret teacher seemed to blame the child for his behaviour, and not the staff who obviously couldn’t deal with his needs, and this is the bit I can’t get over. The teacher also criticised the parent too, which doesn’t surprise me because we know nothing about our kids do we?? *sarcasm* and in this blog, the child is demonised. Again.

How are we meant to educate people that disabled kids are here to stay and they have as much right to be here when the grown up refuses to take responsibility for the child? Disabled kids need support, and whatever that level of support is, it doesn’t matter if the bricks stopping the rain coming in are mainstream or special needs, because the person providing that support is the one who will prevent that child from drowning.

At the end of the day, if an adult is allowed to blame a child, and consequently create a monster, no amount of funding or training or resources in the world can support that child to succeed. Isn’t it about time we start to look at the attitudes and views of adults choosing to work with children like my son, like Chris, and like the child in the Secret Teacher piece? When recruiting staff, are we asking the right questions? Do potential candidates see disabled children as equal in worth? Do they believe in ‘integration’? Do they think disabled children should all go to special needs schools? These are the unasked questions that many working in schools would answer differently to, and for different reasons, and it’s a subject we are still allowed to discuss openly. What if we discussed whether or not children from different cultural backgrounds should be allowed to attend a mainstream school? We’d be done for racism, so why are we still having the debate about where children should go to school? The options of mainstream or special needs are only there because we allow them to be, and if there isn’t a fair and humane way of deciding if one is more appropriate than the other, then there should be just one school which must meet the needs of all our children, and if it doesn’t it’s the school’s fault, not the child’s. By categorising the school, we are categorising the child and when you do that the child ceases to be a person, and could quite quickly become a monster.

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Anti-austerity, minimalistic purge.

I can’t write at the best of times but I have to purge before Monday or I’ll end up in Billinge*.  I also need to do it quick or I’ll end up in Leigh**. So, to save time for anyone who is daft enough to read this, here is a quick rundown of the week just gone.  No dates or specifics, but generally in chronological order.

  • Stayed up all night to watch general election
  • Start with a cold
  • Disability discrimination claim – gov body missed their deadline to respond.
  • Postman delivers a card telling me there’s a letter at sorting office with not enough postage and I need to pay £1.74
  • Some words like bastards and wankers are said to the card.
  • Find out the documents which I should have received at 3rd bullet point were sent first class post on 6th May. Find out the legal team at the council had emailed them to the tribunal, but decided not to email me. N.B.  Card requesting payment for postage still identity unknown but very strong suspicion of who it is.
  • Disability discrimination claim – the barrister representing the governing body is using the ‘tendency to physical abuse’ card*** so in response I’ve asked staff currently working with my son to fill in a short questionnaire about how often he has physically abused them.  I find out they have been ‘ordered’ not to write any comments about my son.  Strangely they have never been physically abused by my son.
  • I shoot the messenger and tell the staff they should grow some balls and ignore what they have been told, and tell them I don’t want staff working with my son who are afraid to speak up. Cried all afternoon.
  • Interim Director of Children’s Services visit us at home to apologise for the cock up regarding the safeguarding issues we had, and which led us to remove our kids from the school involved in the discrimination claim.   Seems genuinely sorry, but it’s easy to apologise for people who have quietly ‘retired’ or gone on to pastures new. We’ll see…
  • I apologise to the staff who I sent packing, and I think they understand where I’m coming from.
  • Disability discrimination claim- the tribunal emailed me the documents I should have had on 6th May, and the council’s legal team resend them by recorded delivery which I receive the next day (4 days after the deadline)
  • SEN tribunal – LA send their position statement for Monday’s hearing.  They won’t put details about my son’s continence/toileting needs in the statement, even though the words come from a specialist urology nurse in a children’s hospital.  Tax….payers…..money…..used…..to pay staff from Wigan council to argue the toss about something that is as simple as the right to pee and poo, on a toilet, when one gets the urge!!!
  • I went to the sorting office to pay the unpaid postage, thinking the letter might not be from the LA.  It might be from the hospital or it could be a big lotto win or something.  2 weeks ago the LA had missed another tribunal deadline because they sent the document 2nd class and to be honest I didn’t really think they could be that incompetent to make another ‘postage’ mistake.

As you can see, the only markings on this envelope are in the top right hand corner and they appear to resemble early Stone Age cave paintings, said to be made using charred fragments of mushroom remains, which we now know were eaten by Stone Age people.

Here is a carving which, translated, means “Under no circumstances deliver that letter to the intended recipient.  Delay until at least the Bronze Age”


Photo courtesy of http://www.thehistoryblog.com/wp-content/uploads/2011/09/Rouffignac-finger-flutings.jpg

Here’s a fab blog called ‘Crazy about Mushrooms‘, which tells all about the Red Lady, who loved mushrooms.

Ok, I feel much better now I’ve got that off my chest.  The envelope, was in fact the document from the legal team at Wigan Council, representing the governing body of the school who discrimInated against my son.  So next time anyone in Wigan gets poor service, and the ‘cuts’ are blamed, remind staff of the money the council are saving by using traditional methods of communication.  And at least they don’t use email, which is so much, er, well, cheaper still.

* Billinge was a hospital where nearly every baby in Wigan was born up until about 10 years ago.  It also had a psychiatric unit.

**Leigh hospital also has a psychiatric unit.

Both of these places are often referred to, inappropriately, to imply someone has mental health issues, and as people like Katie Hopkins, Michael Gove and other Stone Age characters have been in the news last week for their lovely views on really important things, I just wanted to test the water and see if we are all becoming desensitised to decency and being good people who actually care about our people or are we all being so badly affected by austerity measures they make us into complete and utter @rseholes?

***’tendency to physical abuse is an exclusion detailed in the Equality Act 2010 which basically means if someone is physically abusive, they are not discriminated against if for example, they are excluded from school, or inappropriately restrained, even though they might have, for example, autism or ADHD.

Worrying case law ……http://www.education11kbw.com/2015/01/25/discrimination-tendency-to-physical-abuse/

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NSPCC’s take on ‘prevention is better than cure’…

Last year, a group of parents (including me) ‘found’ each other because we all had one thing in common: our disabled child had been harmed in some way, by staff at 2 different schools in Wigan.  Our story was on the local BBC news, but I’d say the airplay the BBC gave the council was slightly disproportionate to what they gave to us parents.  The Chief Executive sat in the studio and told a pack of lies.  I don’t know who’d given her the information she confidently gushed, but the BBC didn’t challenge her.  Apparently judges (???) had decided in all our cases that there was no blame to be had by Wigan Council, and all our cases had been thoroughly investigated (????) which was completely wrong.

Soon after this, the NSPCC published a report called ‘We have the right to be safe’ Protecting disabled children from abuse and we contacted the authors, asking them to help get someone to listen to us and to take action.  More generally we expected them to use the information we were telling them, which is what they just written about, in a proactive way instead of writing a report telling everyone how at risk disabled children are and just leaving it at that.

Sadly, the NSPCC believed Wigan Council, who told them that I was taking legal action (which wasn’t correct), but even more disappointing was that the NSPCC seemed to hang on to this lie, in order to provide a reason for them not being able to engage with us.

Here is the original email we sent to David Millar and Jon Brown, who are the authors of the report, and following are some excerpts from the subsequent emails:

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___________________________________________________________________________________________

Dear Diane,

Thank you for your e-mail, which clearly raises some important matters. As you will have seen from our recent report, the NSPCC is committed to promoting the safeguarding of disabled children and promoting their wellbeing. We will look into this further and come back to you as soon as possible.

Yours sincerely

David.

David Miller (10/11/14)

________________________________________________________________________________________

Dear David

Many thanks for your swift response.

Are you in a position to indicate how you will be looking into this? I ask only because up to now, people only get as far as asking the local authority, at which point the LA tell them what they want to hear and the case is closed.

This is part of our frustration so I hope you will be able to keep us in the loop with details.

Thanks again

Yours sincerely

Parents as named below. (10/11/14)

______________________________________________________________________________________
Dear Diane,

………. You may recall that John Cameron suggested to you on 16th October that one possible way forward would be for the NSPCC to convene a meeting with Wigan, yourself and other interested parents to discuss further any outstanding concerns you have. While Wigan council are more than happy to attend any meeting that may help move things forward, as suggested by Mr Cameron, because of the impending action you plan to take that meeting would appear to be somewhat premature.

I would suggest that we re-consider meeting as a group, which Wigan would be more than pleased to be in attendance, following the outcome of any action being taken by yourself.

Yours sincerely,

David.

David Miller
Development Manager: Disabled children (12/11/14)

___________________________________________________________________________________________
Dear David

I am extremely concerned about the extent of misinformation being provided by Wigan Council. …………..
………..You mention impending action, which I take to mean I am taking action. You also mention action I am considering; which one is it?

It appears to me that regardless of our justifiable and significant concerns about the way 6 different disabled individuals have been treated, the option and right that any of us have to achieve justice for them …………is being used as a very poor excuse for not meeting with us.

I am not prepared to say whether or not I am, or intend taking legal action as I feel the role of the NSPCC is entirely outside of that process…………..

I am extremely concerned with your lack of concern about what is happening in Wigan and as a parent, to know that my son, and other children could be harmed again without consequences is absolutely devastating.

Yours sincerely

Diane Kay (12/11/14)

___________________________________________________________________________________________
Dear Diane,

Thank you for your e-mail……We suggested a meeting between concerned parents and Wigan Council in the hope that we could help ensure that you have a positive relationship with Wigan and to see if the NSPCC could assist in helping both yourself and Wigan find a way to address your concerns. Wigan Council are happy to attend such a meeting in the future but understandably after any further action that is being considered by you has run its course. We would still be able to facilitate this…………. Additionally it is my understanding that Ofsted undertook an inspection of the school, possibly as a result of your expression of concerns to them, and you may be aware that their findings were that the school achieved an outstanding grade.

I appreciate that the findings of Wigan, Ofsted and the response you have received from the NSPCC fall short of your expectations, but presently we feel there is nothing more we can usefully do at this time.

Yours sincerely,

David.

David Miller
Development Manager: Disabled Children
NSPCC

(18/11/14)

_________________________________________________________________________________________
Dear David

Thank you for your reply.

………You seem to be happy to ignore my concerns and those of 5 other families, which is a real issue.

As I said in my last email, any legal action I might be considering/be taking/be looking into should not prevent you meeting with the council and the other parents………..
As you have mentioned legal action twice now, please could you tell me exactly what information has been given to you as I believe lies are being told by Wigan Council about me.

Finally, are you suggesting that disabled children who attend an ‘outstanding’ school are safe from abuse? Doesn’t this just reinforce the dangerous myth that people don’t abuse disabled children? I consider this to be an irresponsible response, and for what it is worth, I believe Ofsted have swept issues under the carpet to save reputations……..

Yours sincerely

Diane Kay. (18/11/14)

____________________________________________________________________________________________
Dear David
I am one of the parents involved in this seemingly fruitless quest we find ourselves in, in trying to get help for these vulnerable children we have.

I can only reiterate and echo what Diane Kay has said to you in that in my case LADO also did not fully investigate my case either. No evidence of any investigation into the abuse of my son was ever given to me anyway, it simply did not happen. All six families here share this experience; complaints made, alleged investigations carried out, but no action taken or complaints were deemed to be unfounded despite hard evidence in most of our cases.

These six families have come together on discovering that we have shared the same traumas with our children; 5 at one school, and 1 at another, but all under Wigan borough and all swept under the carpet.

I thought ‘no organisations reputation was more important than the children in it’, but we are all living proof that that statement is certainly not true.

Lastly, I have to say that I am exasperated by the fact that because a school is deemed as being ‘good’ or ‘outstanding’ by OFSTED, then the NSPCC stance is that that overrides and obliterates any safeguarding issues anyone ever may have had in regard to their children in that school. I speak from personal experience in telling you categorically that a few boxes ticked on paper DID NOT mean that my child was safe; he wasn’t.

Sincerely

Janet Houghton (18/11/14)

______________________________________________________________________________________________

Here is some wording from the child friendly version of the ‘We have a right to be safe’ report, but I’m really struggling to believe these words are not just tokenistic.  When the NSPCC choose to ignore 6 adult parents, all articulate and able to convey concerns about safeguarding in a very clear way, what hope in hell do these children have, who are completely dependent on the adults who might abuse them, to speak up and stop the abuse?

image

Many disabled children are completely unaware that they have rights, and the key findings of the report seem to point very much to children who must have some understanding of the dangers, and are able to participate and interact to learn ways of protecting themselves:

image

These activities are great, but what about the disabled children who rely totally on adults for their daily care, and are unable to self report, or are unaware of abuse happening, or are aware but can’t communicate their fears and concerns? In a civilised, caring society, an adult would do the right thing and prevent such abuse happening, but we all know that doesn’t always happen, and the reasons for that are varied.

In the ‘We have the right to be safe’ report, I felt the emphasis is placed more on abuse from family members, or people involved with the child outside of school, and I think it is very naïve of such a large organisation like the NSPCC not to place as much emphasis on abuse of disabled children which happens in schools. As a parent of a disabled child, this offends me because the message I take from that is: ‘parents are perceived as capable of harming their child, but people (often) paid to care for them in schools are not.’
Children, whether disabled or not, but more so if they are disabled, are at risk of abuse from adults in positions of trust in schools. Fact. Yet this reality isn’t being explicitly publicised. Large charities which are being given huge opportunities to tackle inequalities for disabled children seem to be afraid of going to the mucky end of the very long barge pole they rarely use.
So, is the message I’m hearing, that parents are perceived as more capable of harming their disabled child than an employee in a school is, one that can be addressed? I think so. And it shouldn’t be difficult to do, but it is, as long as parents are seen to be dots in an enormous landscape that is a child’s life. We are the most important people in our child’s life most of the time, yet often our views and concerns are given little weight. In my previous blog piece called The Answer is no. Now, what’s the question? I talked about the lack of respect given to parents’ views (specifically in relation to SEND tribunals, but can be in any situation), and the NSPCC are amongst a group of large, influential organisations who have ignored concerns made by six families in Wigan, relating to abuse of disabled children in schools. OFSTED and the DfE have been equally as inactive.

So what next? The NSPCC write and publish a report about the risk of abuse of disabled children, they acknowledge the myth that needs busting about people not abusing disabled children, yet when 6 families contact them to tell them what has gone on in Wigan, to their disabled children, the NSPCC fall silent. Instead of listening, and believing 6 parents, they take advantage of a misleading piece of information, provided by the council presumably to imply ‘don’t get involved, it’s a bit messy’, and they back right off, report in hand.

Serious question: how can you ignore 6 families who say their children have come to harm in school, and how can disabled children be safe when people in positions of power refuse to listen to parents?

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Biancaaaaa!!

A very special baby has been born today.  My 8 year old asked “whose baby is it, Prince Charming’s?”  That’s my boy. 

Let’s face it, the birth experience Kate has just had is far removed from what most women go through.  The editor of Majesty Magazine, Ingrid Seward, is in the BBC News 24 studio, talking all things royal.  She said earlier that Kate would be in a private room, with access to ‘wet nurses’ (WTF??), 24 hour room service and general luxury.  
This article from the Guardian – The Royal Baby: A winner in Britain’s infant mortality lottery says it all.  Children are dying from poverty, but I also think the continued dismantling of the NHS will only add to the mortality rates. 

I know the royal family are loved by many, but why does this (then unborn) baby have more right to life than the rest of the babies being born every minute in this country?    During the discussions on BBC News 24, it was clear that no risks would have been taken with this mother and the baby.  Everything would have been done to the letter.  No expense spared.   And that’s what I think is wrong.  One baby’s life is no more valuable than the next, but the difference in life chances is immense.  

In 2005, when my son was born, there wasn’t even an obstetrician on duty in the hospital when I went in with reduced foetal movement.  Granted it was after midnight, but I can only assume staffing levels haven’t improved much since then.  

What was really funny, and I hope the BBC will show it, was when the newsreader, Maxine Mawhinney said to Ingrid Seward, “they might call the baby Carole…………………………………………………………

  


after Kate’s mother”.  Mrs Majesty nearly fainted!   Not that there’s anything wrong with the name Carole.  I know one who works in Debenhams and she’s lovely.  

(This was meant to be a piece about my experience with the NSPCC, but I lost the content due to a technical error, so I’ll do it another time).

I’m pleased for the couple though really, but no more pleased than I’d be for any other couple who I don’t know.  





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A right grand SEND reform day out

Mythology is an essential on the job spec of many LA job application forms I’m sure of it! Great blog by bjpren and useful info about the myths spouted by LAs regarding SEND.  Give it a read!

bjpren

Yesterday I had my yearly darn good jolly down to London to do a bit of training and to discuss what’s going on out there – most frequently urban myths which have circulated from somewhere unknown, or directly from LAs. Now, personally I would question why an LA would put in print something that has no basis in law and masquerade it as correct, but unless someone acts on it, these myths remain. I posted a bit about transport a few weeks back and the letter of response from the DfE, which is a good example of how misinformation can get corrected.

A bit of housekeeping before I go on a ramble – I do need to point out that, although I volunteer for a large charity, I do not speak for them, I am posting my own thoughts on various subjects. I need to make that quite clear. I…

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