Posts Tagged With: person-centred

Third person, twice removed

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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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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)

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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)

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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?

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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:

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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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