Sloven Towers and Ordure Hall.

Tags

#justiceforLB, adult LD services, Connor Sparrowhawk, local authority, Ordure Hall, Sloven Health

For nearly two years, since the preventable death of Connor Sparrowhawk, (aka ‘LB’) the organisation under whose ‘care’ he died – Southern Health NHS Foundation Trust – has been making responses of quite monstrous carelessness and crassness.  Its actions have earned the central organisation of the Trust the richly deserved nickname of ‘Sloven Towers’.

There really is a tower!

It started by immediately categorising LB’s drowning in a hospital bath as a ‘natural death’; continued with failure to ensure that remaining patients were safe (two months after he died, the Care Quality Commission failed the unit where LB died on all ten heads of inspection); moved on to putting pressure on LB’s family to stop causing trouble for the Trust; invented a slew of (specious) obstacles to further investigations; scrabbled around for last-minute ways to delay publication of the independent report that found LB’s death was preventable; tried to bully LB’s mother into compliance with Trust preferences and employed smear tactics against her; and most recently, stuck a barrister up in front of the coroner at the pre-inquest meeting, to repeat the long-discredited ‘natural death’ canard and argue that there was therefore no need for a jury.

The coroner, commendably, gave the Trust’s arguments short shrift, and a jury inquest is expected in October.

However, while Sloven is front and centre in the responsibility frame for failing to prevent LB’s death, they are not alone.

LB was admitted to the NHS hospital where he died – an Assessment and Treatment Unit or ‘ATU’ called Slade House, which has since been closed down – because there was not enough support available for him to stay at home safely.  LB, who had autism and learning disabilities, had seemed unsettled in the months before his admission, and his unhappiness had resulted in escalating episodes of behaviour that was dangerous to himself and others.  His mother hoped and expected that the ATU would be able to find out the underlying causes of LB’s behaviour, and help him learn ways to manage his stressors in everyday life.  She also hoped that LB’s time in the ATU would provide an opportunity for Oxfordshire County Council, the body responsible for providing suitable community support to LB, to come up with meaningful help for his return to the outside world.  What little service had previously been offered for LB was not adapted to his needs, and the only alternative offered was the Direct Payments scheme.  The DPs had proved as useless as the Council support, providing money that was unusable, since services or support of a kind that would be helpful to LB were simply not available for purchase by families.  If, when LB’s mother pleaded with them to put something more appropriate in place, OCC had provided the services that would have enabled LB to stay at home, his mother would have continued to ensure his bathing was supervised for safety.  He would not have drowned.

But OCC are also responsible in other respects.  The Council, through its Director of Social and Community Services, was part of the Oxfordshire Clinical Commissioning Group.  The CCG was the body that awarded to Sloven Health the contract to provide learning disability and mental health services.  If Sloven were providing an inadequate service, then it was partly the responsibility of the Commissioning Group for failing properly to scrutinise and monitor the contract.  Let’s not forget that according to the CQC, services at Slade House two months after LB’s death were still so grossly inadequate as to be immediately dangerous to the remaining patients.  But it was worse than that: the CCG had been aware since January 2013 that Slade House wasn’t up to scratch.  It was just that nobody had done anything about it.

OCC also had responsibility for LB’s safety through its membership of the Oxfordshire Safeguarding Adults Board.  The Safeguarding Board should have applied the Deprivation of Liberty Safeguards procedure to LB once he was no longer ‘sectioned’ but was still being held behind a locked door.  It didn’t.

Finally, OCC had the duty to assess LB’s needs and provide the services that would enable him to be safe when he came home.  After a very short time in the ATU, it became evident that being there was not helpful to LB; he was losing motivation and skills; he wasn’t getting any helpful therapy, and he wanted to come home.  But if he came home before the right support was in place, he and his family would find themselves back in exactly the same situation as they had been in prior to his admission.  OCC’s Adult Social Care foot-dragged over assessing and organising support, meaning LB’s discharge was delayed… and delayed.  And while ASC faffed around doing not a lot, LB was trapped in an environment that was so unsafe, he ended up dying there.

So Oxfordshire County Council has responsibility for three areas of failure that led to LB’s death: the inadequate provision of social care which led to him needing admission to the Sloven facility in the first place; the failure of the joint bodies of which the Council was part to provide proper oversight or safeguarding; and the continuing failure to organise suitable social care in the community that inordinately delayed LB’s discharge and left him exposed to unnecessary, and ultimately fatal, risk.

Up until recently, OCC has been very quiet.  Then at the end of March, out of the blue, the Director of Adult Social Services sent LB’s mother a copy of an ‘independent’ review that Oxfordshire had commissioned from a social care consultant.  The council had not told LB’s family that the review was underway or asked for information from them.  It had instead, without family consent or even knowledge, allowed its ‘independent’ reviewer full access to LB’s confidential social services records. The DASS finished by telling LB’s mother that the report – about her own son – was ‘confidential’ to the Council and must not be shared beyond her immediate family without written permission of the said Council.  Dr. Ryan didn’t share the report’s contents at that stage, but she did share the fact of its existence – and also shared the menaces that had accompanied its disclosure.

However, Dr. Ryan’s day-to-day blogging of her interactions with various organisations involved in LB’s (non-)care make it difficult to believe there could be much in the report that isn’t already in the public domain.  Someone commented, ‘I found a copy of the OCC report just lying by the side of the track’ – and added a picture to prove it.

The commenter was quite right.  The threatening tone about breaching confidentiality was, of course, so much spurious claptrap, but when Dr. Ryan protested about the way the report had been created and communicated, she was given more condescending and inaccurate manure.  At one point, the Council tried to explain away the breach of confidence with regard to LB’s records by saying that when preparing the report, the consultant was within the circle of confidentiality because they were working for the Council – thereby blowing their own ‘independence’ argument out of the water.  And the reliability of the finished product was equally bogus.

The report itself proved to be a confection of irrelevance, self-serving half-truths and flat-out lies.  Besides omitting directly to contact LB’s mother Dr. Ryan, the reviewer had also failed to make use of relevant non-OCC documentation that was in the public domain, in particular  Dr. Ryan’s blog, which covered the entire period.  Instead, it seems, the reviewer had taken OCC’s apparently somewhat sloppily compiled records and treated them as though they were in themselves complete and impartial.  A initial trawl through the review showed a number of glaring errors, but in order that this misrepresentation should not come to be treated as a definitive statement of what happened with LB and social care, Dr. Ryan has had to go fine-tooth-combing through the statement, her correspondence and her writing from 2013, to find documentation for a line-by-line rebuttal of the errors.  It has been a time-consuming and soul-wrenching process.  In 23 pages of supposedly independent and impartial reporting, there were 61 examples of provable factual error, opinion presented as fact, or tendentious commentary.

These 61 perversions of fact and truth could have been avoided if Oxfordshire had undertaken a transparent process, or put the report compilation out, with LB’s family’s agreement, to someone truly independent who would have taken account of more than the defensive accounts given by Local Authority officers desperate to cover their backs.  What was produced instead was worse than manure, an unspeakably stinking slurry of shitespeak, smear, and innuendo.  It was textbook Sloven, raised to the nth power: arse-covering untruths, broadcast at random without a thought or a care for the terrible additional damage they would do to an already pulverised family.

Oxfordshire County Hall is an unprepossessing lump of a building: a quadruple-decker sandwich of grubby concrete and dark glass.  For administrative as well as architectural reasons, it will evermore be for me,

Ordure Hall.

End of the Line.

Tags

adult LD services, independent living, institutions, learning disability, local authority, social enterprise, true stories, voices of disability

Upset and furious to find out that yesterday, one of my favourite places in Auld Reekie closed. Today, it is holding its farewell celebration for staff and clients. After 25 years of superb, sensitive, supportive and scrumptious service, the Engine Shed, a multifaceted social enterprise that trains young learning-disabled adults in its various businesses (a café, a bakery, a tofu production unit, an outside catering service and a conference centre) is having to close after Edinburgh Council withdrew funding.

The Engine Shed provided learning-disabled school and college leavers with a pathway to employment via an individually-tailored, time-limited, graduated training programme that linked on to external employer placements and then paid employment. All this while offering the citizens of, and visitors to, the Athens of the North, delicious vegetarian food and cheerful service. The model had a well-documented success rate for people with learning disabilities over the last quarter of a century, but Edinburgh City Council will now fund only one model of employment support for young LD adults, whereby individuals are ‘placed in work and then supported’. Bish, bash, bosh. Complete bosh, in fact. Where will suitable work placements will be found, after five years of national austerity, for learning-disabled youngsters with no prior training or experience?

Disabled workers, even those with years or decades of training and experience, have problems finding work. It’s worth remembering that two years after Remploy closed, 75% of its employees are still out of work and having to deal with the horrors of fitness to work assessments, Jobcentre Plus requirements and a callously draconian sanctions regime.

The Engine Shed is near Holyrood Park, where I spent many a happy Fringe Sunday watching acts ranging from the sublime to the ridiculous, swiftly bypassing the plain tedious. One of my favourite Fringe acts was a local one, Edinburgh Renaissance Band, a group of eccentric virtuosi who bring long-forgotten tunes to life on a variety of nearly-forgotten instruments: viols, lutes, sackbutts, cornetts, gemshorns, crumhorns, shawms, and one that always brought a happy smile to my face, a delightfully peculiar thing called – with good reason – a rackett. It looks like the offspring of a deformed oboe and a bottle-gourd and produces low, buzzing notes like a basso profundo bumblebee trapped behind a windowpane.

The other evening, Grenouille and I were – unusually – the only ones in the house, E and Papa being out doing Big Boys’ Stuff. G and I wound our way peacefully through the necessarily lengthy bedtime routine, and after bath-pj’s-medicine-supper-teeth-book-cuddle, I got G up and running on the overnight machines and went down to the kitchen to do the dishes. Once I’d turned the taps off, it was very quiet. Over the swish of the dishcloth, I could hear what sounded like a rackett, playing something that resembled ‘Old MacDonald Had a Farm’. I paused, pan and cloth submerged in the suds, and listened. It was definitely ‘Old MacDonald’, but what on earth was it being played on? Eventually it dawned on me that it was G, happily humming down the ventilator tube to make it vibrate. Probably does it every night, but normally there’s too much other noise going on immediately after tuck-in time for the performance to be audible.

Add your own conclusions here about how difficult it is for learning-disabled people to get themselves heard. Myself, I have a nasty feeling that the former and potential clients of the Engine Shed are going to find themselves pushed well beyond the fringes of the working world. I hope they have a riot of a party today.

***

P.S. There are two ‘Save the Engine Shed’ petitions running – one to the City of Edinburgh Council here and one appealing to the public for support here.

Edinburgh readers can ask their local MP to intervene by using this email link.

Common Trials: Out of the Mouths…

Tags

appropriate vocabulary, institutions, learning disability, local authority

Had trouble getting Eldest out of the door to school this morning.  Not because he was up late, or dawdled over shower and breakfast, or even because Grenouille was causing a holdup (a not-infrequent obstacle to progress).  He needed to get something off his chest before he was ready to go and focus on academics.  So I walked round the house with him, listening, as he packed his bag, tied his tie, gelled his hair, wiggled his feet into his shoes, and talked non-stop.

Yesterday an outside speaker had come to give a talk for the weekly PHSCE afternoon.  She explained that her job as a senior social worker involved supporting people who had suffered abuse and hate crimes.  In her allotted hour and a half she would, she said, be focussing on the groups most likely to suffer abuse and crime, but that did not mean, she said, that such things did not happen to other groups, and she named some of the minority groups whom she would be touching on in passing, but not talking about in any depth.

Seventy-five gruelling minutes later, she invited questions.  The very first one was along the lines of, “You said that you would be giving us an overview of the topic but you haven’t mentioned any of the minority groups in your talk.  What proportion of the total do those groups constitute, and do they come in for broadly similar abuse to the majority, or is there a qualitative difference?”

The speaker had lots of facts and statistics at her fingertips.  The minority groups accounted for about 15% of the reported incidents.  It was assumed that this broadly reflected the proportions in the unreported totals as well.  She gave figures for the minority groups and some (gruesome) examples of incidents.  The data suggested that on the whole, those minority groups were slower in coming forward and suffered worse injury.  However, it was necessary to focus on greatest need, which meant on the majority.

You don’t get away with assumptions in front of E’s schoolmates.  They may be kids of varying abilities, but it’s one of the great strengths of the school they have all, without exception, been rigorously trained in ethics and encouraged in critical thinking.  The questions multiplied.  “Why do you think it is reasonable to assume that the unreported proportions are similar to the reported ones?”  “If people in the minority groups take longer to come forward and have suffered worse injuries, doesn’t that suggest your assumption is dodgy?”   “How do you justify measuring ‘need’ by incident numbers, not seriousness?”

I think the speaker may have got a bit flustered at this point, because she gave replies that acknowledged that the data were arguably flawed, and that the seriousness of minority abuse was probably discounted, but then said that this ‘wasn’t important’.  I gather a bit of a hubbub promptly broke out and the Head of Year diplomatically decided that there wasn’t time for any more questions, as he needed the last five minutes to thank the speaker for her time and input.  As a result, E never got to put the point he was burning to make, which was that calling the experience and needs of any particular group, minority or majority, ‘not important’ was, basically, outrageous and unacceptable.

I agreed with him, but asked him to remember that because of his family situation, he has extra sensitivities.  I wondered whether maybe the speaker was trying to say something about ‘statistical significance’, couldn’t find the precise words she needed, and so, under pressure, used an inappropriately vague one?

E glared at me.  “If she couldn’t find the right words, then she should have just shut up.”

I tried again.  “Or perhaps she meant to say ‘not paramount’ and got mixed up?”

E still wasn’t having any of it.  “Somebody at her level would only say the wrong word if, somewhere at the back of her brain, she was thinking it”, he said, flatly.

He pulled his keys off the hook and half-turned on the doorstep.  Suddenly, he looked tired, sad, and much older.  “I know I’ve got extra sensitivities.  But as far as I’m concerned, the moment she let that ‘not important’ out of her mouth was the moment she stopped being a social worker and started being a git.”

The Transport Policy.

Tags

institutions, local authority, medication, rights-based provision, Special Needs Education, true stories

 Food for thought on why people with disabilities (and their families) need a rights-based approach to provision.  And how big institutions will try to grind people down even with those rights in place.  A True Story, in the form of a contemporaneous letter, from the year that Grenouille moved  up to secondary school.  Getting there involved a lengthy journey each day to an out-of-county school, mostly along remote rural roads.

 Ah, transport. Bless ’em.

Notification arrives in early August saying that G will be taken to school next year by Such-and-Such taxi company and will need to be ready to rock’n’roll at 8 a.m.  No mention of an escort.

So, I phone the transport department.

Me: “Hello, thank you for letting me know about G’s taxi for next year.  I wonder, could you tell me please about what is being done to train G’s escort in the necessary emergency health protocols?”

Transport Person: “G doesn’t need an escort.”

Me:  “Oh? I went to G’s Statement review a couple of weeks ago, and everybody was in agreement that owing to medical needs and other difficulties, a suitably trained escort was vital.”

TP:  “They (meaning the Authority SEN team) haven’t told us that. I’ll have to contact them.”

Me:  “Thank you. On the assumption that my information is correct, can you tell me please what sort of training the escort will get?”

TP:  “Oh, we don’t train escorts.  We used to, but under our new policy, the Authority doesn’t do that.”

Me:  “Indeed?  So what happens if a child becomes ill on the journey?”

TP:  “The driver phones 999.”

Me:  “But my child carries diagnostic kit and treatment in case of feeling unwell.  Are you saying that instead of helping G to use it, the taxi people will call out an ambulance or paramedic from an already overstretched major-emergency service?”

TP:  “Yes.”

Me:  “Well, quite apart from calling 999 being a ridiculously inappropriate use of public resources, particularly since it may well occur several times a week, may I point out that this is a safeguarding issue?  If my child doesn’t get treated until a paramedic makes it to wherever along Rural Road the taxi is, there is a risk that G will be a lot more unwell by the time of getting treatment than if treated straight away.  Doing nothing will actively contribute to making the illness worse, and G can become seriously unwell very rapidly.”

TP:  “It’s up to you or the school to make sure G’s OK to travel before leaving.”

Me:  “Indeed I will, and I am absolutely sure the school will, but it’s a 45-minute journey and that’s plenty of time for G to become ill, even if everything’s fine on setting off. G needs someone in the car whose principal responsibility is to help in case of illness.”

TP:  “Well, we can make you a parental grant. That’s like, a mileage allowance, and you drive.”

Me (starting conscious deep breathing):  “I’m afraid that’s not acceptable.”

TP:  “Oh, do you work? <sounds of rustling paper> It doesn’t say anything about that here.”

Me (on a breath about the volume of an Olympic swimming pool):  “Well, not that it’s relevant or any business of the Authority’s, but I can assure you that I work extremely hard, and taking three hours out of my day Monday to Friday to shuttle my child to and from school is not possible.  And as it happens, one of the jobs I do is to get up to check on G’s health during the night, and provide treatment if need be, and after nights when I’ve had only three or four hours’ sleep, I’d be in no fit state to drive to Schooltown and back twice in a day.”

TP:  “That’s all we offer.”

Me:  “Look, if you won’t train an escort and I won’t provide parental transport, you HAVE to find another option.  You know as well as I do that you have a statutory duty to arrange APPROPRIATE transport for children with disabilities.”

TP (reluctantly):  “Well, the only other option is a private ambulance.”

Me (with unsuppressed incredulity):  “Really?  That sounds unbelievably over the top for a child who just needs help with monitoring and maybe taking some simple-to-administer medication – but if it’s the only appropriate thing you have to offer, I’ll take it.  Thank you.”

TP (panicky):  “Er, um, er, er, I’ll have to…”

Me:  “No, seriously, I’ll take it.  No problem.  Look forward to getting the revised notification letter.  Byeee!”

Put the phone down and laughed until my middle hurt.  Didn’t hear from them during the next few days, and didn’t dare call back until I could feel confident of doing so without giggling down the phone line. Made my week, so they did.

But when I still hadn’t heard after ten days, I wrote it all down and sent a letter of complaint to the Authority’s SEN team.  They folded.  Of course they folded.  Game-playing gets kinda difficult when you have no cards in your hand.  It was agreed that G would have a taxi and a trained escort, and that I would facilitate training alongside a local paediatric nurse.

Got back home late evening on the last Friday in August, after a fabulous fortnight’s holiday in Cornwall, to find a message on the answerphone, date-stamped that afternoon: “Hello, this is Claire from SEN Transport, I’m just checking to see that you know about the training meeting for G’s taxi escort on Monday, please phone me on this number:  xxx”

So at 9 a.m. Monday I hit the phone.  Claire is not in the office.  No-one in the office knows where she is.  She has not left any notes of her schedule.  Nor do they know when or where the meeting is, although they think she may be on her way to it.  And of course they have no idea what contribution, if any, G and I are expected to make to the meeting. I deep-breathe like a steam-engine and persist, until at 9.35 I finally learn that meeting is at 10 a.m. on the paed. ward of Local Hospital.

After a mad (and, I regret to say, slightly sweary) scramble, arrive on the dot of 10 with G in tow, but paed. ward does not know which room the meeting is using…. although they are super-helpful about finding out.  Swan in five minutes late:  “Hi, this is G, who I’m sure would appreciate the offer of a chair.  I’m Kara and I’ll be back just as soon as I’ve managed to locate some change to feed the parking meter before my car gets clamped.”  Wish I’d had a camera to record the expressions!

Return to find G ensconced, but nobody has thought to make a space for me, so I stand and glare until someone cops on.  Then suggest saccharine-sweetly to Claire that if one is making in-absentia arrangements near close of business on a Friday for an event near start of business the following Monday, it makes sense to give the absent people FULL information?  As in, if one is disconcerted by an answerphone, the sensible and courteous thing to do is ring off, collect one’s thoughts and full information, and then ring back and leave a second, comprehensive message?  Nobody minds a second message on the answerphone, but being forced to do a sort of by-phone, against-the-clock scavenger hunt for info first thing on a Monday is, well, let’s say, unnecessarily irritating?  Sure a different approach will be greatly appreciated!  Claire pinkens, squirms and mumbles.

After which, the children’s nurse gives Claire and some other random Transport manager bod (still not sure who he was!), the two drivers (one regular, one relief) and two escorts (ditto) the standard emergency health protocol 101, with curlicues from G and me.

The escort is brilliant – lovely glam-granny type, turns up on the first day armed with a tote full of things like clean, damp flannels sealed in a plastic bag, and a roll of kitchen towel, so she can do cleanups if necessary.  Simples! – not nuclear physics!

The cream of the joke for me, though, comes later when I hear from the SENCO that as a result of my pointing out their statutory obligations, the Authority has had to rewrite its SEND transport policy so that it properly supports all children with any disability.  Bahahahahah!  Serves ’em right, the chancers!

Hope that’s brightened your day a little, H (and all of you).  I am so OWNING these Supermummy knickers at the moment!

Love, hugs and gales of righteous laughter

Kara

Peter and bereavement.

Tags

adult LD services, local authority, true stories

Another unexpected story.

When we moved to our present house, Peter was one of the first people to greet us.  He chatted about the previous owners, asked lots of questions about us, advised us on some local facilities: (“Do you like a pint?  Don’t go to the Bell, it’s not a pub for a lady.”)  He was a delightfully friendly and cheerful dude and would always pop over for a natter whenever he saw me clipping the front hedge or working in the garden.

In his late forties, Peter lived with his elderly mother in the family home – a three-bedroomed Local Authority house in the estate across the road.  He did the physical work around the house and garden under his mother’s direction, and night carers came in to see to his Mum when he went to bed.  About a year ago, his Mum became very ill.  We were awoken several times by the blue ambulance lights flashing across the way while a stretcher bumped out of Peter’s front door, and Peter’s conversations became less frequent, shorter and more worried.

I haven’t seen Peter around lately, but yesterday, I bumped in to him in the centre of town, looking uncharacteristically morose, and we had a long chat.  His Mum died in mid-February.  I hadn’t known, and expressed regrets both for his loss, and for not having realised that his Mum had died, “Although I did notice I wasn’t seeing you around this Spring”.

Peter tells me that’s because he isn’t living in the area any more.   As a single man, he wasn’t allowed to stay in a three-bedroomed house.  The Council has moved him to a one-bedroomed bungalow in another part of town.  Peter didn’t want a bungalow; if he had to move to somewhere one-bedroomed, he would have preferred a flat, but all three offers he was made were for bungalows and he had to take the third one or he would have been made homeless.  He is particularly incensed by the fact that the bungalows are all wheelchair-adapted, with ramps and level-entry showers –  he feels that he is being written off (“I’m only 50 and there’s nothing wrong with my legs”) and also that ‘some poor old soul’ who needs these adaptations is missing out on them.  But, he says, the Council was desperate to lay hands on the three-bed house and moved very quickly to prevent him under-occupying a family-sized property.  I make noises of agreement that February to May seems like a pretty swift move.

Peter says that actually, he’s been in the bungalow for the best part of three months.  His Mum’s carers helped him register her death, and the Council said it would pass the information on to other relevant departments, to save Peter struggling with difficult paperwork.  The Council were certainly very efficient in passing the news on to the Housing Department, because Peter got his termination and resettlement notice four days after his Mum died.

He and the rest of his family were still in the middle of arranging the funeral.

The brothers and the beer money

Tags

#107days, adult LD services, care in the community, learning disability, local authority, schoolroom centre stories, true stories

This post is long, but try as I may (and I’ve been trying for a week, now) I can’t find a way to split it into smaller chunks that will still be authentic.  Despite what I said yesterday about stories needing to be shaped, sometimes true stories just flat refuse to slot obligingly into a conventional space.  Unlike stories made up from imagination, whose characters and events can be chopped and changed and turned inside out to fit, the real people in true stories demand, and are owed, their due place.  In writing, as in life, the Soutar brothers have stubbornly resisted attempts to cram them into a predetermined pigeonhole.

It took me some after I joined the schoolroom centre to be sure which of the brothers John and Alec I was addressing if I saw one of them on his own, and I wasn’t the only member of staff to find it difficult.  When they were side by side, you could see that John was a little more pinch-faced and sharper-featured than Alec, but when they were apart, it took a moment or two to be sure.  In spite of their peas-in-a-pod-ness, the brothers were not twins.  John was the elder, and he was far more taciturn in manner.  Most of the time, John was barely monosyllabic.  When you spoke to him, you were lucky to get an “Iphm” in return.  Alec wasn’t what anybody could call talkative, either, but he was more excitable than his brother, and could appear aggressive if he thought he wasn’t being listened to.

As young men in the 1960’s, both brothers had worked as labourers ‘doon at the docks’, helping to shift crates and sacks of cargo, and sweeping out warehouses between consignments.  Alec enjoyed the occasional reminiscence about incidents from his working life: “John, d’ye mind on the time when….?”

“Iphm”.

Containerisation had been the death of manual jobs on the docks.  As Alec put it, ‘wan loon wi’ a crane, workin’ by his lane self’ could move volumes of cargo that had once required hundreds of pairs of hands.  As I understood it, the brothers had been out of regular jobs ever since.  They shared lodgings and a mutual atmosphere of simultaneous solidarity (against the rest of the world) and intermittent antipathy (between themselves).  Like all the trainees, they survived on Housing Benefit and Income Support, or ‘the Broo’, as out-of-work benefits are known in Scotland, from the days when the payments were dispensed by the Employment Bureau.

Having had a working life, neither of the brothers was taken in by the ‘pay packets’ handed out by the Centre.  Alec especially made no bones about finding it insulting that the Centre should try to kid him on that an amount that wouldn’t even buy you a pint of heavy, was a week’s pay.  He took the money, of course; for people as close to the breadline as he and his brother were, any cash was welcome, but would mutter about when he had been doing a real job for real wages.

“Proper man’s work, proper pey, no’ sweetie money fur bairns.”

The ‘pay packet’ was a repeated insult to Alec’s self-esteem, and we staff were careful not to offer further injury to his pride.  We made sure to let him know that we had heard and understood him, by repeating his own words (or a paraphrased version of them) back to him.  We didn’t try to persuade him if he was resistant, and if we wanted him to do something, we would frame the request as him doing us a favour.

The supervisor had no truck with such an approach, and on her – mercifully infrequent – visits, freely castigated the brothers as ‘that lazy pair’.  She would demand to know why they were loafing about with their hands in their pockets instead of sanding down desks (or whatever), as they were supposed to be.  John simply turned his back on her, but Alec would be spitting with fury after she left: “Yon bitch ca”s this work!  She widna ken work ef it bit her erse!  Ah’m a workin’ man, Ah’ve daen proper man’s work! Proper man’s work fur proper pey!  Ah’m no’ takin’ orders fae that bitch o’ a wumman!”

“You’re not for being told what to do, and I’m not for you getting away up to hi-do and roaring about the place.  Maybe if we put our heads together, you could help me find a way to sort the problem, Alec?” said the manageress, thoughtfully.  “What if…. ”  She called over one of the male care workers, Dave, and they went into huddle with the brothers.  To judge by the cackling, whatever was being plotted appealed strongly to the brothers’ sense of humour.

“So we’re agreed, then?” said the manageress, as she emerged from conclave.

“Oh, aye, mistress!” said Alec enthusiastically.  “An’ ‘hank you!”

The manageress laughed.  “She aye comes and nips my head after she’s clapped eyes on you two; if she doesn’t see you, we’ll all get some peace!  You’ll be doing me a favour.”

“Oor pleasure!” said Alec, gallantly.

“Iphm!” said John, sounding as unimpressed as ever, but he looked slyly amused.

Thereafter, the supervisor’s arrival was the cue for Dave to remember that it was time for the brothers to ‘return that video’, and they would all put on their coats and exit nippily through the side door.  The video shop was next to a little cafe, where the three of them could sit at the back by the counter, drinking tea out of thick white mugs, while the brothers smoked the poisonous skinny roll-ups they favoured and ran surveillance on the Centre entrance.  As soon as the supervisor’s car drove away, they would saunter back over, grinning conspiratorially and evidently buoyed up by having got one over on authority.

Alas, a video swerve wasn’t possible the day that Alec came in with a letter from ‘the Broo’, which he couldn’t read.  In convoluted officialese, it summoned him to an interview to answer allegations concerning infractions of benefit regulations.

“Do you have any idea why the Broo want to talk to you, Alec?” asked the manageress. Alec didn’t, so she let him go into the workshop and phoned his social worker.  The social worker had no information either, but undertook to make enquiries and said he would accompany Alec to the interview.

The manageress frowned.  “Dave, you’ll need to walk Alec down to the DSS.  If he thinks he may be in trouble, he’ll just go AWOL and then this stushie will only get worse.  And I want you -” she swung round on me – “to go with them and keep tabs on what’s being said while Dave deals with keeping Alec calm.”

We walked down to the DSS office on the appointed afternoon, with Alec muttering apprehensively between us.  The social worker met us at the office doorway, his face sombre, and we climbed the stairs to the big, dusty-grey, crowded waiting room with the glassed-in interview booths at the front.  The social worker took a numbered paper ticket from the circular red dispenser and after a long wait, the indicator machine clacked over to Alec’s number.  We crowded into a booth, but when the DSS clerk saw the letter, he buzzed us through a door at the side into a sort of corridor lined with more booths, and directed us to one of these for a ‘private’ interview.

Another DSS clerk appeared behind the glass, shuffled papers, and then laid out what can only be called the case for the prosecution.  Alec, it seemed, had been seen working in town, and his benefits were going to be docked.  Mr. Soutar, said the clerk, had a prior record of transgressing the rules on casual working.  She addressed Alec loudly and distinctly.

“YOU REMEMBER, MR. SOUTAR, WHEN THERE WAS ALL THE TROUBLE ABOUT THE TATTIE-HOWKING?”

“Ah’m no deif,” grumbled Alec, neatly evading the question of his work on the potato harvest.

The clerk’s lips pinched.   She turned to the social worker again.

“Mr. Soutar has had the situation explained to him in terms suitable to his understanding – YOU KNOW, DON’T YOU, MR. SOUTAR, THAT IF YOU EARN ANYTHING, YOU HAVE TO TELL US RIGHT AWAY?”

“Aye,” said Alec.

“So no further allowance can be made for his mental handicap.”

Dave and I were puzzled as to when this alleged working could have happened, since  Alec had been attending the Centre every day, but the clerk said that Alec had been observed by DSS staff several times in town, working in the evenings.

Alec was indignant.  “Ah’m no’ workin’!  Ah wis jist helpin’ ma pal cry the papers.”

In the late afternoon of each day, casual newspaper-sellers collected bundles of the local evening paper from the printworks and hawked them across town from makeshift pitches in doorways.  To attract customers, the vendors called the headlines out in a characteristic, but generally incomprehensible, ululation.  This peculiar noise was (I presume) the origin of the term ‘crying the papers’.  Alec had been taking part of his friend’s bundle, so that the man had, in effect, had two pitches, meaning that his papers sold out quicker.

“So you were receiving money!” said the DSS clerk.

“An’ Ah gie’d it a’ tae ma pal,” retorted Alec.

“Your pal didn’t let you keep any of the money?” said the DSS clerk.

“Ah didna want it,” said Alec.

The social worker and the DSS clerk had a bit of a sharp argument at this point as to whether Alec’s pal could be deemed to be employing him, and whether helping someone out unpaid constituted ‘working’, with the social worker telling the DSS clerk, in so many words, not to be such a nitpicking fool.

“So you receive no money afterwards?” persisted the clerk.  “You are not rewarded for your time or labour?”  Alec looked blankly at her.  “Tell me again what happens,” said the clerk.

“Ah cry the papers.  Ah gie ma pal the money.  We go tae the pub an’ he staun’s me a pint.”

“Payment in kind!” said the clerk, triumphantly.  “We take this sort of thing very seriously!  Claiming Income Support whilst working constitutes fraud, which renders you liable to loss of benefits and fines of… “

“Hang OAN a minute!” said the social worker.  The arguments broke out again, louder.  At last, the DSS clerk agreed to seek authority not to pursue the matter, provided Alec stopped helping his pal with the papers.

The social worker took us back to the Centre.  “I’ll need to come in to reinforce this with Alec.”

With the manageress, we went into the office, where the social worker tried to impress on Alec that he could not work for payment in cash or kind.  Alec, who had been frightened and subdued in the DSS offices, was still frightened, but felt safe enough, in more familiar surroundings, to become loudly assertive.  “Ah’m NO workin’!  A pint’s no’ pey!”

“But you heard the Social Security lady say it is pay, didn’t you?” said the social worker.

As usual, contradiction wound Alec up.  “Yir a” talkin’ bollox!  Ye bunch o’…”   The obscenities spilled out at top volume.  To add to the confusion John came bursting in to find out what was upsetting his brother, contributing his own shouts of “Oi!  Oi!  Oi!” to the hubbub, until Dave persuaded him that he could best help Alec by staying quiet.

The social worker stood rather helplessly by the door.  “I’m sorry, Alec.  I ken you were just doing your friend a good turn.  But rules are rules….”

“Fuck AAFF!” bellowed Alec, by now not merely beside himself, but far past reasoning or even hearing.  He was crying, shouting, punching the wall and thumping the furniture, so that only fragments of sentences were audible.  “Bliddy weemen! … man’s work … wisna working … pocket money … on’y helpin’ … “

The social worker made to speak again, but the manageress shook her head at him.  We all stayed still and silent.  Slowly, the phrases ran down into hiccups and snorts.  At last Alec drew a long, shuddering breath, drew his sleeve across his face and looked round.

With his face smeared with tears and snot, he still had a dignity about him as he said, jerkily but with resignation, “Ah’m no’ tae help ma pal oot or the Social will stop ma Broo.”

“That’s about the size o’t, Alec,” confirmed the social worker.

“An’ Ah canna let ma frien’ staun’ me a pint.”

“Not without losing some of your money.”

“Ef Ah wis still a workin’ man, naeb’dy wid stop him staundin’ me a pint.”  Alec stared unseeing in front of him and his tears began to flow again.  He said, “Nae job.  Nae money.  An’ nae frien’s.”

The social worker said, “You can still be friends with your pal.”

Alec didn’t spare him a glance; his eyes stayed fixed on nothing.  “No, Ah canna.  Ye canna be pals wi’ someone ef’n ye canna help them oot an’ they cannae treat ye.  Helpin’ oot an’ treatin’ is whit pals dae.”

Dave moved to sit opposite, so his face was in Alec’s line of sight.  He said quietly, “You feel you’re being forced to give up your friendship.  You can’t afford to be friends with your pal any more because you will be docked money if you do the friendly thing and help him out.  Or if he does the friendly thing and buys you a drink.”

Alec focussed on him and nodded miserably.  “Aye.  An’ it’s no’ fair.”

“No’ fair,”  said John’s voice, unexpectedly.  “Basterts.”

Common Trials: No-fun and Games

Tags

#107days, local authority, Special Needs Education

Having vented my spleen over the Annual Review random medical appointment, I phoned to cancel it.  Even had I felt inclined to take Grenouille, it wasn’t at a convenient time, since it clashed with another appointment (howls of ironic laughter, Bruce).  I also asked the admin person what the point of the visit was supposed to be, and, as she couldn’t tell me, told her not to bother scheduling another one until I had spoken to the doctor – and only then if I agreed it was a worthwhile use of time.

The doctor phoned shortly before the would-have-been appointment was due.  She sounded youngish, pleasant enough, but I could feel my defensive-posture muscles tensing again at the tone of her voice when she said, “I understand you’ve been asking about the purpose of this appointment”.  My side of the dialogue promptly started to twin-track itself in my head.

“Well, yes.  Given the amount of medical information that’s contained in Grenouille’s Statement paperwork, I’d have thought there was more than enough to be going on with.  And, forgive me, but if there is a query about some particular aspect of Grenouille’s health, then I’ll be consulting with the appropriate specialist, not with someone unknown to whom I have received no referral.”  And yes, I am being passive-aggressive.

The doctor said, “Ah.  So G already sees a number of doctors.”

That was news to you, eh?   Not impressed.  “Yes, and….?”

“Well, we offer an annual appointment to all special needs children in our area, just in case there’s something that the parents want to bring up.  It’s really for the benefit of children who don’t see a doctor regularly, not those who have regular treating clinicians.”

In other words, this is a fishing exercise for enough material to cover the arse-cheek marked ‘Safeguarding’?  Seriously not impressed.   “I see.  Well, rest assured that between G’s appointments with the GP, the local hospital, the secondary referral centre and the supra-regional tertiary referral centre, G sees an ample sufficiency of doctors.  And if the Local Authority wants a medical report for the Annual Review, I suggest you recommend them to look in the files and write to G’s supervising generalist at Local Hospital, who is responsible for co-ordination of all the other elements of G’s care.  I know there is a letter from Dr. W. in the LA files, because she copies me in on all correspondence related to G.”

“Doc-tor Dubb-ell-yew, Lo-cal Hos-pit-al”, says the doctor, evidently writing the information down.

And now I am kicking myself for feeling I need to propitiate the LA by spoon-feeding them Dr. W’s name.  For needing to present myself as reasonable, when the LA doesn’t bother.  For making life easy for them, when they have a track-record of making things so bloody difficult for me.  For being a patsy.

I have an unpleasant sensation of having been tripped up in a game whose rules I haven’t read, and whose moves I suspect but don’t understand: a gigantic swirling vortex of Blind Man’s Double-Bluff.  But then I remember that there is a rule-book and that the smart thing to do is work out the game, then refuse to play it.

Because this isn’t about playing games.  It’s about me helping the LA, and the LA helping me, to help Grenouille.

Isn’t it?

Common trials: The goblin and the ogres.

Tags

#107days, Down syndrome, local authority

I was seven when we moved from the town to the country.  I missed my best friend Ria, but village life offered many compensations and soon I had far too much going on for her absence to make a huge gap in my days.  My favourite new activity was ballet classes – white dress, pink sash and hairband, ribboned pink leather practice-shoes, lining up heavy wooden high-backed chairs in the Village Hall for an impromptu barre – which is where I met Vicky.

Vicky’s Mum and mine agreed to take it in turns to sit through the lessons and walk us the mile home.  One week we would be accompanied by my Mum with my little sister in the pushchair, and the next it would be Vicky’s Mum wheeling her sit-up-and-beg bike with Vicky’s little sister in the child seat behind the saddle. One sunny afternoon, Vicky’s sister had asked to get down, and was trotting along the pavement in front of us.   I said something about how little Naomi’s walking was coming on, and Vicky gave me a funny look.

“How old do you think my sister is?”

I thought about it.  Naomi was only slightly taller than my sister and didn’t speak as well as her, so… “Three?”

“Nope.  Ten.  She’s ten.  I’m the youngest in our family.”  I looked at Vicky walking gracefully, dancer-fashion, with her feet at ‘ten to two’: skinny as a twig and my height despite being nine months younger than I.  I looked at the rounded, stumpy figure of Naomi, trundling along towards home.  It didn’t make sense.  Ten?

“She’s a Mongol”, said Vicky.

This didn’t make sense either, and I said so.  Mongols were people who came from the steppe-lands between Russia and China, like the Huns in Peter Dickinson’s The Dancing Bear, not schoolfriends’ little big sisters.  Vicky laughed.  “Not a Mongol from Mongolia.  It’s just that her eyes look like a Mongolian person’s.”

I had never noticed.  “So why is she so little?”

Vicky shrugged.  “She just doesn’t grow.  She will never grow up – she will always have the mind of a child.  The doctors say she’ll be stuck at a mental age of two.  That’s why she doesn’t come to our school.  I don’t mind.  If she weren’t like she is, I wouldn’t be here.  Mum says she would have stopped at two kids, if Naomi had been all right”.

In later chats with my mother, Vicky’s Mum, a slightly brusque lady at the best of times, made no bones about her feelings for her middle child.  “She didn’t feed when she was born.  That enormous tongue of hers just lolled about, she couldn’t suckle.   I thought she would just quietly slip away in a week or two.  Would have been the best thing for everyone.  But there was this nursing sister on the ward who took her off and kept giving her bottles.  I could have slaughtered that nurse.  She had no idea of how much trouble she was going to cause me.”

I did not understand the more pragmatically infanticidal statements in this part of the conversation, but the tone in conjunction with the body language gave me an impression of complex feelings of hurt, resentment, guilt and anger behind the words, so I picked out what seemed like a safer topic.  “Naomi has a big tongue?”  Another thing I hadn’t noticed.

“Oh yes.  One of the reasons she doesn’t talk properly.  That and her deafness.  When she was a baby, her tongue hung out of her mouth.  Looked awful.  I thought, that nurse may have landed me with a defective baby to bring up, but I was damned if it was going to look an idiot as well as be one.  Every time that tongue poked out, I poked it back in again.  She got the idea eventually.”

Naomi didn’t start school until she was ten or so.  Prior to that, she had been one of the ‘deemed ineducable’ children, given no schooling or educational therapies.  Unsurprisingly, she never learned to read or write, and her speech remained difficult to follow if you weren’t used to it.  But she got into a routine of day-centre, activities, outings with peers and support workers.  She moved into a Mencap group supported living facility in her early thirties, and was very happy there.

After fifteen or so years, the prevailing wind in social care swung round against such housing, funding arrangements changed, the facility was closed and Naomi was ‘decanted’ into a smaller establishment.  She missed her friends; the support in the new place was reduced; she found it difficult to stick to a sensible routine without help and prompts; and she drove the other residents half-crazy by having her television on at full volume in the wee sma’ hours, so that she could watch – and hear – it in bed, without having to wear her deaf-aids.  The new place eventually evicted her.  She went into an adult foster care placement, then another, then a 24-hour supported place.  Each time it was further from home and away from the people and places she was familiar with.  Vicky has spent, and still spends, substantial chunks of time negotiating with funding authorities, care providers, and clinicians, trying to make marginal improvements to her sister’s situation.

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Vicky and I started our own families in the same year.  She had every antenatal test under the sun for each of her pregnancies, because after a lifetime of watching her sister and her family struggle, she didn’t want to have to do it over again.  I didn’t have any tests apart from 20-week scans, because my partner and I had decided that we were going to welcome whichever babies came to share our lives.  It was just as well that we had had that conversation in advance, since second time round Grenouille showed up, with a non-Down’s genetic rearrangement and rather more health problems than Naomi ever had.  Eldest was still a slightly shaky conversationalist when Grenouille was a baby, but loved big words and, shooting for ‘sibling’, informed a relative that “Mummy has had my goblin”.  It seemed inadvertently apt for my little changeling.

But from starting out in Naomi’s same second-sibling position, Grenouille has had a very different experience, although I can’t guarantee that it won’t end up in a similarly miserable place.  Loved to bits by all the family and adored by Eldest, treated with patience and to welkin-ringing cheers for every achievement, Grenouille has flourished.  On the official side, there were early-intervention physios, OTs and speech therapists; a Portage worker, then an Early Years peripatetic teacher; Makaton sign-language from babyhood to pave the way for the spoken language that didn’t emerge until age five or six; a one-to-one aide at nursery and dedicated TA support at school; a Statement of Special Educational Needs; a differentiated curriculum to fit a spiky ability profile.  The therapists and school staff have all been wonderful (it helps, of course, that Grenouille deploys an irresistibly charming personality) and with a – very – few notably regrettable exceptions, so have the healthcare people.  I can’t help but speculate how different Naomi’s life would have been, given similar chances and supports.

The Local Authorities, on the other hand (four and counting…), have been pretty uniformly awful.  I have written reams of letters, amassed lever arch files stuffed to bursting with documentation, made countless telephone calls, sat through a five-hour SEND Tribunal, had to argue annually over support hours, educational therapies, transport provision and reasonable adjustments to allow time to access extra-curricular activities.  I have done a complete research project on how to apply to the High Court for Judicial Review – although (thankfully, since legal action ain’t cheap) so far the mere threat of Judicial Review has sufficed.  The idea that responsibility for Grenouille’s educational future will transfer to this bunch of incompetents at age 16,  is too hideous to contemplate, never mind that they might be able to cut us, Grenouille’s family, out of the loop altogether once Grenouille hits blow-out-eighteen-candles day.  The Authority staff don’t understand Grenouille, they don’t understand Grenouille’s condition or needs, they don’t seem to understand the legal weight of some of their responsibilities.  Worst of all, they give every indication of not having the faintest conception of the extent of their own ignorance, nor even of the possibility that they might be ignorant in some respects.  They get things wrong, and no sooner have they been set to rights about whatever-it-is, than they go and screw up on the next thing.  I don’t know whether the awfulness of local authorities is a continuing echo of the attitudes that disabled Naomi even more than her extra 21st chromosome, or whether the dire attitudes we have encountered in relation to Grenouille have been specially new-minted, all shiny for the 21st century; but either way they are unacceptable.

It’s debatable whether Grenouille is a goblin, but some of the statutory authorities have the definite appearance of ogres.