Information disclosure within the SEN system: your stories

[inappropriatelyemployed]

I have what I think is some very interesting news about a possible campaign.

I have met with leading international privacy lawyers who are prepared to act for free in relation to raising the issue of unlawful information sharing between LAs and their NHS colleagues in the SEN process. This will include issues of disclosing reports to Tribunal without consent, passing on information without consent, discussing our children to fix up reports and inaccurate information in reports, etc

They have said they will organise a meeting with the ICO and throw their weight behind lobbying for the issue of clear guidelines.

The firm are prepared to do all the leg work for this as a pro bono project. They are looking for case examples of these practices so we can compile a dossier.

I know some of us have been on the receiving end of some very shoddy practices.

Can you PM me if you would like to get involved by sharing your story? This would be treated confidentially and used just to lobby the ICO. it could be anonymised if you would prefer

[outragedandappalled]

Perhaps we should wear badges such as ' I know the Sencop', 'Honk' and ' 'I'm part of the MNSN massive'. It might help us to be taken seriously

[outragedandappalled]

Or even one such as ' SEN campaign for fairness and justice'. That'll put the wind up 'em.

[StarlightMcKenzie]

I think 'Oppressed' is more accurate.

'SEN Parents, Know Your Place!'

Take away their hope and power and demand they show appreciation for any small concession. Treat them with pity and raise your status as 'provider'.
Be part of this evangelical culture and teach parents of children with disabilities to trust in us and we will deliver what we know they need, not what they want. Reward those who have faith, send those without straight to he'll!

[inappropriatelyemployed]

Absolutely Star, absolutely. You will be driven out of the ranks of the 'deserving parents' for heresy!!

[StarlightMcKenzie]

It's gone already.

Has the page been removed or was your link wonky.

I hope deleted, because that shows that people are out there and they are taking some bloody notice.

[inappropriatelyemployed]

Sorry no here

[Summerloading]

Following my earlier post on co-production and pathfinders, see this report from CA Family re strengthening parent participation,

www.cafamily.org.uk/media/656462/pp_monitoring_report_low_res_for_web_2013.pdf


particularly this excerpt

We asked forums if they received additional funding to support their participation work. The amounts vary significantly, and there is not always clarity about whether the additional funding is purely to support participation,or whether forums have been commissioned to deliver support and / or services. In the few areas where there is significant funding (over £40,000) our intelligence would suggest that these forums are also now delivery agents for the funder.

"Delivery agents"?

[MumuDeLulu]

Actually, I think good practice does need to be highlighted. There is lots of propaganda, but real provision is so bad, that for most of us the 'rotten apple' is the norm. Our point of reference is a barrel of decomposing fruit.

It's precisely because the whole system stinks, that examples of real-world acceptable work are so badly needed. If you'd never seen a good apple, someone else would need to tell you what they look, smell and taste like.

[inappropriatelyemployed]

Ok fine, but if all you do is highlight good practice and not put it in context than you are as bad as the LAs who tell you all about how well regarded they are by other people or schools who tell you how great Ofsted think they are.

There is clearly a place for highlighting good practice but in a world where bad practice is the norm, is that the right focus? Doesn't it make parents feel, again, like no one is really listening?

It's not like other areas will suddenly say - oh look, that blog thinks Xcounty is good, let's change our practices.

Also, I am sorry if this offends but I really think it is a bit patronising to say we wouldn't know what good practice looks like (by your apple analogy). Really I find that very offensive.

I know exactly what good practice should look like - which is why I know I am not getting it.

[MumuDeLulu]

I think books and blogs are probably ok too . Blogs rarely make much money, and low-circulation specialist books need to be publicised, and sell, otherwise the publishers won't even consider the next author.

Btw, while suggesting we should define, describe and disseminate good practice, I really don't think posing for BFF photos with ministers, nor becoming financially entangled with LAs are good ideas in any way.

At this point I'd normally suggest a read through Bad Pharma for the risks to objectivity posed by becoming an industry insider. Given Ben Goldacre has now had his pic taken with Gove, perhaps make up your own mind.

[inappropriatelyemployed]

Sorry I am getting angry about this now. There are precious view avenues for parents to get their voices heard. They are silent. Absolutely silenced by this system.

This isn't against you Mumu at all honestly. Just the system and the way it violates parents private space and lives and then sits on them to keep them quiet. Then to see the organisations and 'advocates' who should be shouting about this, canoodling with Ministers and talking only about good practice makes me

I take your point about Goldacre too.

[MumuDeLulu]

Sorry to offend you IE. I totally agree that any 'individual good practice' should be looked at with an explicit acknowledgement of its rarity. Not 'Mumushire are ace'. More, 'One particular SLT in Mumushire uses up-to-date, evidence-based programmes when setting her SMART targets'. Or 'Every VI child in Mumushire gets accessible computing equipment, and a weekly session with a properly qualified specialist VI teacher'.

Context is everything, and I should have stated that.

When I started, I didn't know what 'good' SEN practice would be. I was a Victorian pauper, agreeing that my fecklessness caused the SEN, grateful for my dc's dollop of gruel. In RL I still constantly meet people who've never thought they could expect better than the sloppy, lazy, incompetent service they've grown used to.

Yes, they do know it's rubbish. But often they don't realise quite how bad it is, nor that (say) 10% of the professional staff serving SEN dc are actually refusing to collude with the constant lies, and insisting on doing a reasonable job regardless. And those staff are being driven out; having their good work publicly acknowledged may give some small protection.

[MumuDeLulu]

Two legs good, four legs bad

[MumuDeLulu]

meaning that whatever we say, it'll probably be twisted

[inappropriatelyemployed]

Sorry Mumu too. I'm just being pissy because the level of this poor pratice astounds me.

It's also that none of these 'big' organisations or 'names' are remotely bothered about my contact or retweeting my stuff about the campaign save for Anna Kennedy.

I'm concluding that their job is not to ruffle feathers but to not help spread the word about a legitimate campaign supported by a firm of lawyers is baffling.

[StarlightMcKenzie]

'Yes, they do know it's rubbish. But often they don't realise quite how bad it is'

I think one of the reasons for this is that they believe the rubbishness lies in the limited availability of the services, rather than the quality. They feel that if their child had MORE then they would be understood better, get appropriate intervention etc.

In reality, those of us who have fought hard for more, realise too late that more crap is just that. Then you start the battle for an alternative to the crap, but because you have 'more', changing is a)expensive to match and b)you have no friends left in the LA from your battle for 'more'.

[StarlightMcKenzie]

I don't think parents DO know what good practice looks like tbh, because they are encouraged to consider their child's needs in regards to what the LA want to offer. They are told that what is provided is the best they can expect to get. Words such as cuts, limited, high level, lucky etc are banded about and the parents become grateful for 'anything'.

Most don't and can't challenge provision because by doing so they risk being cut off completely. I often think of it as that condition where hostages 'befriend' their captors in order to cope and because that is the only thing they feel they are able to control i.e. their level of 'likedness' in the hope of an odd 'favour'.

[StarlightMcKenzie]

Most can't kick and scream and hit their heads against a brick wall for long. To get any sustenance at all you have to be compliant and show gratitude, and if you pander a few egos you might get a bit more. But complain about the quality of it and you'll risk months of abuse.

[tryingtokeepintune]

Agree with starlight in that most parents don't know what good practice is.

I remember being so pathetically grateful to the LA while they were denying my ds the right to minimal support and tell me how lucky I was. I remember how I tried to appease the school all the years they wre stealing from my ds, using his TA in order to save money.

Thank goodness for sites like this.

[StarlightMcKenzie]

And most TEACHERS don't appear to know what good practice is.

[tryingtokeepintune]

But why should they when parents would accept most things they say and defer to their expertise.

[inappropriatelyemployed]

I see your point but I'm sick and tired of the 'accentuate the positive' line - it's like some kind of Stockholm syndrome, if we work with them, and encourage them they'll get better by osmosis.

They won't. Why? Because it is about money and careers and self-perpetuating bureaucracies that only give a crap about how parents think in so far as it reflects on their own auditing criteria.

I'm tired of big charities buying into this as it helps justify their own existence (or provides funding). We hear enough about evaluations that tell LAs how great their work is, or their SLT service is, or Bills before Parliament supported by charities tied to their success or parental advocates groups telling us to look at good practice when they are too wimpy to start shouting about bad practice.

My point is - if you don't know what 'good practice' is perhaps, as you guys have pointed out yourselves, it's because you don't realise that the services your child is being offered are crap.

But if you know what the law says, you realise how crap things are because LAs ROUTINELY act unlawfully.

So, you could approach it two ways: accentuate the positive and start a campaign talking about how good things can be when they are actually almost universally, shit, in the hope that (a) parents might self-refer and question their own provision and (b) other LAs will see the error of their ways.

But, seriously, what is the point of that when we know that the reality is, if you are looking for examples of 'good practice', they will be individual based - indeed, point is proven by the limited examples of 'good practice' on the SN Jungle website. And, actually, I defy anyone to find an example of an LA which doesn't routinely pursue unlawful SEN policies or which measures the outcomes of its interventions or which demonstrates a clear understanding of the Equality Act etc etc. ?

Or you can at least let parents tell the truth about their experiences in the hope that someone might pay attention and that, in the meantime, parents will see they are not alone.

If it looks like shit, and smells like shit, it's probably shit.

So why concentrate on the occasional petal of apple blossom?