Last Friday – 4 July – was a peculiar day.  The first anniversary of LB’s death somehow sharpened up the edges of the sorrow, so that it cut in more keenly.  At the same time, being part the visible wave of support for him and his family was an uplifting experience.  In case you missed it, on the 4th, people were invited to change their social media profile pictures for a specific one of LB – this one:


– and explain why to anyone who happened to be reading.  As far as I know, there’s no way to track how many people changed their profile pictures, but during the day, my social media feeds went significantly monochrome, and the 107 days site took over seven thousand hits – 7,226 to be precise – compared with its usual daily average of around 550.  On Twitter, somebody said their notifications looked like ‘a Connor Sparrowhawk chorus line’ and #justicefor LB and #107days evidently high-kicked their way into a great many people’s consciousness.

I’ve learned a lot during #107days, quite a lot of it about stuff that is apparently supposed to happen but often doesn’t (person-centred planning/care, transition management, family involvement, encouragement of dudes’ aspiration).  I also heard a lot more than I wanted to, about how the same-old, same-old attitudes I saw twenty-whatever years ago still persist, to discount, dismiss, and ignore dudes.

One thing I haven’t found is a clear, coherent, comprehensive, comprehensible source of good information.

For example, in pursuit of a clearer picture of what’s happening in Grenouille’s area of Dude World, I’ve just been on a local Authority information day about the Education, Health and Care Plans that will be issued in place of Statements from 1 September this year.

(Just so’s nobody starts hyperventilating – if your child has a Statement, it won’t be whisked away on 1 September and replaced with an EHCP.  At some point over the next three years, probably at one of your child’s Annual Reviews, the Statement will be re-cast as an EHCP.  Until then, your child’s Statement will stand and carry on as it has done up to now.  Anybody who applies for formal support for their child on or after 1 September and whose child is deemed eligible, will get an EHCP.)

The info day was curate’s egg of an event, and illustrated very clearly how some people whose bread and butter is dealing with dudes’ affairs, don’t have a clue what life is like in Dude World,

The first session was on Personal Budgets, and was given by what I presume was a Council accountant.  I felt quite sorry for the poor man; obviously used to giving presentations to fellow-officers and maybe to councillors, he had equally obviously not been helped to think about pitching his spiel appropriately to a different audience.  His Powerpoint slides were dense with text and jargon – funding streams, top-slicing, notional costs.  But some of the parents of dudes present had dudesome characteristics of their own, including a refusal to pretend to understand jargon and a willingness to state their views bluntly.

The Council  bean-counter found himself being heckled – “What’s that supposed to mean?  This is far too complicated!”

“It’s intended to make things more transparent,” said the Council officer, placatingly.

“Transparent?  Well, I don’t see it, mate.  You need to make it simpler!”

“Yes!” said the Council officer, eagerly trying to steer the conversation in the direction he wanted it to go.  “This will make it simpler!  A single budget instead of multiple funding streams!  A one-stop shop!”

“Hmph,” said the parent.  “Well, we all know that it doesn’t matter anyway.  At the end of the day, the Council will just go ahead and do what they feel like, no matter what we say.”

As hilarious and excruciating as the episode was, the parent was making an important and valid point.  I’m sure that, from that parent’s perspective, the prospect of EHCPs does feel like being subjected to a familiar bait-and-switch trick.  They see a shiny new system being dangled in front of them, twinkling with promise of making things better for their child.  But they find that, as they suspected, the system is too complicated to follow.  It is a reasonable, experience-based expectation that the next thing will be someone saying, “Since you can’t manage this, we’ll have to manage it for you.  Here’s what’s going to happen,” and once again they will have to like what is handed down to them, or lump it.

One of the other people there – also asking the awkward questions – was an IPSEA volunteer.  IPSEA, if you haven’t already come across it,  is an organisation whose full, what-you-see-is-what-you-get name is ‘Independent Parental Special Educational Advice’.  I don’t have enough superlatives to praise it.  It has been my constant go-to ever since we began to have contact with education services for Grenouille, and it became apparent that my natural, inbuilt arsiness was proving no longer enough, on its own, to get the provision G needed.

The IPSEA website gave me the ammunition I needed to keep shooting for a properly quantified Statement for G, with types and amounts of provision specified in precise detail. The organisation helped us into and through the Tribunal process – including by arranging the pro bono services of a barrister – when protracted negotiating over drafts had got us precisely nowhere.  It gave me what I needed to feel able to threaten judicial review when the Statement wasn’t being implemented.  I’ve referred numerous parents to IPSEA, and I know that, just as I did, they have found the people at IPSEA to be endlessly helpful.  (When I grow up, I want to be just like them….)

The website is easy to navigate, its principal sections being ‘What you need to know’ ‘How we can help’ and ‘Hot topics’, with easy-to-follow menus and subsections on the section pages.  The language is clear, non-technical and easy to read, although not Easy Read.  The advice given is very carefully matched to specific situations – for example, in considering exclusions, there are 17 – yup, count ’em seventeen – different advice sheets, so that the parent can pick exactly the right one, depending on how long their child is excluded for, and what the child’s SEN situation is – whether they have ‘no statement’, a ‘good (quantified) statement’ or a ‘bad (unquantified) statement’.  And then there’s another 17 sheets for children in Wales, because the legal framework is slightly different there.

It sounds hellishly complicated, but because the path through to the right sheet is laid out in short, clear steps, it is easy to find what you need.  The cut-the-crap attitude is great too, because it is so targeted at what its audience needs.  Parents whose child has been excluded, or refused a statement, are parents in crisis.  A panicking parent needs concise, precise information; they haven’t got time to assimilate, much less mull over, any unnecessary information.

Crucially, IPSEA is not funded by any government or public bodies, so it can afford, morally, to be kick-ass in defending dudes’ education rights.  An example is the IPSEA contribution to the recent Haining v Warrington judgment, which parents will be able to use in future to challenge cost-based decisions made by local authorities.

IPSEA will doubtless be expanding their website to cover the altered, extended and new rights under EHCPs, but I think we could all do with a similar website to deal with dudes’ post-education rights – in employment, housing, healthcare, financial and judicial matters (amongst others).

Mark Neary pulled together some of the legislation relating to dudes’ rights to live unfettered lives in his stonking ‘Home Rights’ blogpost.  That sort of information, along with citations of relevant case-law including the Nearys’ own landmark judgment, could be the end-point of a ‘What you need to know -> Housing -> Your right to choose where you live’ track.  I see the final choice on each track as being either an ‘Easy-Read’ or an ‘Extended-Read’ version of the same information, so that the site is dude-friendly as well as supporter-friendly.

It would, of course, be a huge job; it would need lawyers, learning disability specialists, database and website designers/programmers, all to work together to make it as useful and comprehensive as possible.  But if pulling all the information together is going to be difficult for a group of highly-trained professionals, how in the name of the wee man are dudes and their families/friends supposed to do it individually?

Justice for LB surely demands that systems’ ‘Divide and Rule’ mantra be overthrown by the #107days principle of ‘Unite and Conquer’.  Anybody up for contributing?