Four Hours With Franklin.

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Now that E is away at University and unlikely to be occupying his room for more than a couple of weeks at a time, the children’s Papa – a tidy soul to the core – has ambitions to turn the space a little more guest-friendly, by turfing out some of E’s more juvenile possessions.  The practicalities of this aspiration have in the first instance fallen to me. To anyone who knows me, it will be no revelation to be told that I am absolutely useless at throwing things away.

How do I know whether E is still attached to the Lego star-cruiser that he so laboriously constructed eight years ago and which has been poised for takeoff from the top shelf of the bookcase ever since?  I dare not even touch it, lest I accidentally dismantle one of its delicate protrusions and put myself permanently in the dog-house.  Ditto the Airfix, the sporting trophies, the Warhammer sets.

“Just go through the books, then”, said P.  Nope.  While P sees a rummage through bookshelves as an chance to winnow out any that haven’t been read for a while, I see it as an invitation to reacquaint myself with old friends.  One doesn’t put old friends out the door.  From The Very Hungry Caterpillar to The Tale of Samuel Whiskers, to Wolf Brother, to Smith, to The Hunger Games, to King Hereafter, E’s bookshelves are a coded chronicle of his life with us, and each of them is still a darn good read.  So having pulled all the books off the shelves and replaced them, I settled down, slightly guilty, very exasperated, and in need of cheering up and soothing, with a couple from his mid-primary-school stage: Mij Kelly‘s Forty-Eight Hours With Franklin and Franklin Falls Apart.

The thing with good books, I find, is that on re-reading, you come across bits that resonate as new, because you have changed in the interim.  I first read Three Men In A Boat in my very late teens, on a Scotland-to-London train, disrupting the entire carriage with honks and snorts of mirthful recognition at the posing, mock-heroics and ineptitude of the young-adult heroes.  Twenty years later, with the benefit of knowing my brother’s personality-plus Jack Russell, I read it again and was convulsed by the contributions to expedition-packing – long-forgotten – of Montmorency the terrier.

Re-reading Franklin, the adventures of an accidentally-animated shop dummy, I laughed again, as I expected to, but I also began to see another layer that didn’t appear to me ten or twelve years ago.  Franklin, born into the world of humans as a six-foot baby, has no understanding of people or how things work, which leads him to repeated close shaves with law-enforcement.  He doesn’t talk, although he learns to repeat sounds, words and phrases that he hears.  He is literal-minded.  Asked to lend a hand, he does what any sensible shop-dummy would do: unscrews one of his at the wrist and passes it over.  He relies heavily on his flesh-and-blood siblings, Gertie and Joe, to protect him from the consequences of his unwittingly disastrous actions. They understand, from a knowledge of his past, what his probable intentions are and what his apparently out-of-context repetitions of stock phrases mean.  They know that when he says, “Ow, ow, ow, motorbike stars”, he means his legs are hurting and “Body no Perkins, body cow”, means actions were stupid (like the cows) but not malicious (like Mr. Perkins).

Well-meaning adults, such as Joe and Gertie’s parents, don’t quite get this, at least not until they have spent time with Franklin and begun learning to understand him.  And even then, the parents get it wrong, initially thinking only of how presenting papers on Franklin to international conferences will enhance their standing as scientists.  Strangers, pardonably, think Franklin is weird or rude when he addresses them as ‘Podgy’.  They aren’t to know this is his attempt at complimenting them for being a ‘prodigy’.  And some strangers, learning just how different Franklin is, see him as an opportunity for money-making: as a freak-show exhibit; as a subject for containment and study; as a tabloid newspaper headline.  In pursuit of their own aims, they ignore or dismiss Franklin’s rights to bodily integrity, autonomy and self-determination.

Echolalia, language differences and communication difficulties.  Incomprehension of the world around him.  Reliance on others’ attunement.  At risk of exploitation and/or incarceration.  Not quite human.  Sounds very familiar, doesn’t it?

Perhaps that’s why there was never a third Franklin book.  Perhaps, having created her living mannequin and seen him evolve, maybe without her realising it, into someone who looks very like an adult with learning disabilities and autism, Kelly just couldn’t imagine a future for him.

P.S. The Franklin books are long out of print, but occasionally resurface second-hand.
They are available together as an e-book called The Franklin Files.

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Chains of Love.

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More satisfactory news for #JusticeforLB recently.  The Slade House site, which Southern Health had been intending to retain in its property portfolio, with a view to selling it off and keeping the profit, is being returned, lock, stock and barrel, to Oxford Health. Thank the entity – or epithet – of your choice for that.

Keeping Slade House for Oxford wasn’t part of the original Connor Manifesto, but as Southern decided – or were pushed – to cut and run from providing services in Oxfordshire, the fate of the site grew in importance.  Sloven, although demitting from healthcare in Oxfordshire, still intended to hold on to all the Oxonian physical assets that had transferred to them at the start of the contract.  But this time, it wasn’t only #JusticeforLB howling, “You have got to be kidding me!”  Oxfordshire residents and local politicians were equally outraged. Under no circumstances could it be morally or ethically acceptable that Sloven would get away with (1) taking over a faltering service, (2) running it down further until it killed a patient, (3) using that failure as a pretext for ceasing to provide services, but (4) still keeping hold of the assets needed for alternative service provision.  Yet the drafting of the contract with Sloven had been so sloppy that, in strict legal terms, Sloven’s retention of the real estate was a distinctly plausible outcome. The Justice Shed began contingency planning for protests, should it ever look like happening.

Under pressure from patients, from local residents, from the press and from politicians, Southern Health eventually conceded that, in the circumstances, insistence on pocketing all the windfall gains from a patient’s death wasn’t tenable.  Nevertheless, the wholesale return of the Slade House site was still by no means a certainty.  As recently as April, Southern were still haggling to put conditions on the return of the site, so that they could take a cut of any profitability, were the site to be decommissioned subsequently.  Continued intervention, not least from outgoing MP Andrew Smith, finally got the matter resolved in Oxford’s favour.

Just glad I don’t have to chain myself to the fence‘, wrote Connor’s mother.

I know she would not have been alone there.  Whether #JusticeforLBers would have been able to encircle the whole site, Greenham-Common-Style, I’m not sure, (while smaller than the Common, it’s still a fair old skelp of ground) but I know we’d have had a good crack at it.  In any case, it seems there were enough people who cared sufficiently about LB, to form a virtual chain around the site and protect it.  A chain of love, if you like.

The question now, of course, is what should be done with it from here on?  On Horspath Driftway, at the southern end of the Slade House site, there is – or was when the Google  Earth images were taken – a sign saying ‘Oxford Health and Wellbeing Centre’.  If only, eh?  But it might be a good place to start.  The Connor Manifesto says that for all dudes – Oxford-based or not – there should be:

  • An effective demonstration by the NHS to making provision for learning disabled people a complete and integral part of the health and care services provided, rather than add-on, ad hoc and (easily ignored) specialist provision
  • Proper informed debate about the status of learning disabled adults as full citizens in the UK, involving and led by learning disabled people and their families, and what this means in terms of service provision in the widest sense and the visibility of this group as part of ‘mainstream’ society.

Back when LB was in the Unit, the struggles, headaches and sheer bloody terror of ‘transition to adult services’ was something I understood only with my head; not, as now, with my churning gut.  G was pre-adolescent, still very definitely a child, rather than a ‘young person’; the transition of the time was the move from primary to secondary school.  But as Pagnol says, “Le temps passe, et il fait tourner la roue de la vie comme l’eau celle des moulins”*.  It’s not just E who has grown and changed: G is at the threshold of ‘transition’ and we have been introduced to a new actor in the production of ‘The Life of G’: the 14-25 Officer.

I have to say, I do not know what this person is for.  Allegedly, he is there to smooth G’s path through ‘Preparing for Key Transitions’ and ‘Preparing for Adulthood’, but so far has contributed nothing: merely collated the documentation of a few things that were already being done elsewhere (and better) by other people.  I’ve asked, repeatedly, for an outline of post-16 options, and been told it’s up to me to scope all that stuff out.  So what’s the point of this officer?  He seems neither use nor ornament.

Equally, I am having trouble with the NHS.  I’m told that as G is not in a special school, paediatric services will cease at age 16.  Never mind that the blasted EHCP – including the H-for-Health component – runs on to 19 or even 25.  Never mind that said EHCP is novella-length, or that G sees so many different health professionals that we need a lever arch file with about two dozen dividers in it to keep track of all the appointments.  Never mind that the twice-yearly consultations with the developmental paediatrician are the only place where I can feel that here is another person, besides myself, who has an overall – if not finely detailed – view of all G’s health needs and direct lines into the secondary-sector specialists that G needs.  Nope.  Immediately G reaches blow-out-16-candles day, all this will fall to the GP (lovely person, but 10-minute appointments can’t substitute for the hour and a half or so that the paediatric reviews get) and the Learning Disability Community Nursing team.

That’s another thing.  Learning Disability ‘medicine’ is embedded firmly in mental health services.  You can’t get a consultant in Learning Disability as such, only a psychiatrist.  Children’s learning disability services are part of CAMHS and they don’t seem to deal with learning disability unless the child also has autism and/or behavioural problems.

And there’s the rub.  G isn’t autistic and doesn’t – at present, at any rate – have any mental health problems.  G is learning-disabled.  G has normal teenage anxieties about fitting in and being part of the group and what-will-I-be-when-I’m-grown-up.  Any additional difficulties with that are not due to mental illness, but to developmental delay that means G isn’t as proficient as the typical teenager at processing those anxieties (and goodness knows, it’s not easy even for the most ordinary and laid-back teenager).  All G needs to stay on top of things is extra time: more time to think about stuff, more time to get responses out, a bit longer to ease into being an adult.

It’s always been the same.  I can remember various, ahem, discussions with various professionals during G’s infancy, during which I was criticised for, allegedly, seeking my own gratification by keeping G over-dependent on me.  Not pushing hard enough for whatever the flavour-of-the-month goal was: weaning; walking independently; having support withdrawn at nursery; and similar things that G wasn’t yet ready for.
My conversation-stopper was, “You do know that G’s genetic condition causes developmental delay, don’t you?  What do you think that means in real life?”
“Erm, well, G’s development is, um, delayed?”
“Obviously.  AND?”
“Er, not quite sure what you are getting at….”
“It means <pause while I mentally insert, ‘you nincompoop’>, G needs to be a baby for a bit longer.”
And of course, when G was good and ready, all those things happened: but on G’s schedule, not anyone else’s.   I just wish there were somebody now willing to work with, rather than on, G.

I hear that since Cheshire West got a pasting in their DoLS case over P, an adult with Trisomy 21, the West Cheshire health bods have appointed a specialist health facilitator for learning disability.  This person will tap into mental health services if they are truly needed, but is primarily concerned with the overall health care of learning-disabled young people and adults: building a person-specific system, based on the presumption-of-capacity provisions of the Mental Capacity Act, to ensure that during ‘transition’, each learning-disabled person’s health-care and communication support needs are fully documented; that they are plugged in to appropriate health support systems; and that if they have to go into hospital at any time, full and accurate information goes with them, to prevent them being put at risk by ignorance.  If only there had been something of the sort for LB, so that the staff would have had his epilepsy, and What Not To Do, set out for them in unmistakable terms.

Apparently, the West Cheshire person holds the only such rôle in the country, so I presume that elsewhere, dudes with physical health problems are potentially still as much at risk as LB was.  But maybe the Slade House site could be repurposed – whether by reuse or by sale –  to provide a permanent Connor Sparrowhawk Learning Disability Health Facilitation Service in Oxfordshire.  And maybe it could, by example, spread learning disability good practice to every Health Trust.

I don’t know if Connor’s family would see that as a worthwhile memorial to their Laughing Boy.  I just have a picture in my head of the love that they have for him, forming the first link in a chain that would wind on endlessly, through other loving families and dudes, into the future.

 

LB: Another Day…In Court.

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It was confirmed yesterday that the Health and Safety Executive are going to prosecute Southern Health for the failings that led to Connor’s death.  To paraphrase Norman Lamb: Good, and about bloody time.

Still can’t get my head round why the Crown Prosecution Service did not pursue a corporate manslaughter charge: the inquest jury found that serious management failures at Slade House contributed to Connor’s death, so presumably the resulting breach of Southern’s duty of care towards him was deemed insufficiently ‘gross’.  Call me naïve or thick but I can’t see how much grosser it can get, than having systems which allow a clinically vulnerable person, carelessly, in defiance of known diagnoses and of recent events confirming clinical risk, to be put into a situation with a high potentiality of death.  Especially given that the risk, and the death, actually eventuated.

However, the Health and Safety Executive seems to have a good track record of holding companies, and their directors and senior managers, to account.  More slog for LB’s family, seeing this one through, on top of the wildly inappropriate General Medical Council (GMC) and Nursing and Midwifery Council (NMC) approaches to involving families in disciplinary proceedings.

I watched the news coverage of the announcement.  But as Huw Edwards launched into the introduction:  “…Connor Sparrowhawk, who was eighteen….” and the familiar images of LB as a giggling toddler and an ice-cream-eating teenager played over, I had an almost physical sensation of a bit of my mind slipping sideways.

Eighteen.  That can’t be right.  LB is three years older than E; he was in Year 13 when E was still in Year 10.  LB was a young man and E was still a baby-faced, coltish boy, lanky and spindly, with what appeared to be more than the standard complement of knees, elbows and shoulder-blades; still in school uniform, still to sit GCSEs, still to graduate into a ‘business dress’ chain-store suit and Sixth Form, still to choose and sit his A-Levels, still to make decisions about where to go next.

Now, E is an undergraduate. At nearly 20, with a full set of whiskers and (following a recent student-prank-gone-wrong) a No. 1 crop, he looks nearer 30.  He’s playing sports three times a week and hitting the gym in between, and even if his sixth-form suit hadn’t developed peculiar pinkish patches after repeated dry-cleanings, he still wouldn’t be able to wear it, as his chest and shoulders have packed on an extra six inches of muscle since he left school.  He’s revelling in having left behind the write-a-mark-a-minute constraints of A-levels, in being able to pursue his academic interests and do the research needed to back up his hypotheses, in finding a circle of like-minded mates for study and leisure, in being responsible for his own schedules, meals, laundry, and employment for spending-money.  So if E is this mature young man, Connor, surely, is approaching his mid-twenties?

Of course, he isn’t.  And it hits me all over again.  While LB has been an ongoing presence in so many lives, and while I have continued to think of him as older than, and therefore somehow growing up ahead of, my own son, Connor has in fact stopped.  Stayed as he was on that brilliantly sunshiny morning, forever an eighteen-year-old schoolboy, about to visit the Oxford bus company.

It’s not that I don’t know.  It’s just that the enormity and awfulness of the realisation seems new and raw, every time.  And as I remember to gasp in another breath, and blink away the prickle of tears, the screen is filled with an image of Connor’s mother, talking to the BBC’s Michael Buchanan.

“He should never have died.  And I… just miss him so….He’s left an unimaginable hole in our lives.”

*****

Appallingly, Connor is not the only one remaining in the same place.  Southern Health is still, still, overclaiming (otherwise known as outright lying) about its actions. “Tonight,” said Huw, “the Trust has apologised again to his family”.  However, and to whichever bit, of Connor’s family the Trust apologised, it didn’t include doing so, in words, to Connor’s mother.

If Sloven can’t get that right, after nearly four years, they can’t be trusted on any of the alleged improvements they’ve made, either.

No learning. No honesty. No Trust.

See you in Court, Sloven.

 

Taking Liberties.

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I can’t pretend to be a Deprivation of Liberty Safeguards (DoLS) aficionada. But a little research reading reveals that the current ‘acid test’, in England and Wales, for assaying whether a person is subject to a Deprivation of Liberty is: if the person is ‘subject to continuous supervision and control and not free to leave’, she or he is deprived of her or his liberty and therefore needs the Safeguards applied, to ensure that the Deprivation and any restrictions or restraints used to enforce it are in the person’s Best Interests.

If a person lives in a care home or hospital, the Local Authority is responsible for checking that the Deprivation is in the person’s Best Interests and authorising it accordingly (a ‘Standard Authorisation’), but if they live in some other place – supported living, Shared Lives houses, children’s homes and residential schools, or even their own home – and are ‘subject to continuous supervision and control and not free to leave’, then any Deprivation of Liberty (and associated restrictions or restraints) has to be scrutinised and authorised by the Court of Protection.

Deprivation of Liberty was one of the lynchpin issues in Hillingdon v Neary.  Steven Neary was placed in an ATU; he was under (theoretically) continuous supervision and control and he was not free to leave the Unit; on the occasions when he managed in practice to elude the ‘supervision’ and escape the control, he was sought and brought back by main force.  Besides the physical restriction of being kept behind a (mostly) locked door and not being allowed to pursue his normal activities, Steven was also subjected to pharmaceutical restraint in the form of high doses of Risperidone.

Since he has been living in his own home, with a round-the-clock support team consisting of his father, Mark, plus a number of paid support workers, Steven has been able to direct his own life.  He decides where he wants to go and when; if he expresses a wish to do something out of routine, his support team facilitates that, whether it’s an unscheduled trip to the shops or dropping in on a family member.  If he wants some time to himself, his supporter(s) will go into a different part of the house, respecting his need for space and privacy while still being available should he need their presence. He is also no longer subject to pharmaceutical restraint, having been weaned off the Risperidone because of the terrible damage it was causing to his physical health.

So while Steven is still subject to continuous supervision, it is questionable whether he is, any longer, subjected to ‘control’.  He is the one in control, his decision-making is supported in accordance with the Mental Capacity Act provisions and his right to make unwise decisions is respected.  He is also arguably ‘free to leave’, even though he would still, in leaving, be subject to continuous supervision, as his support person would go with him to ensure his safety and that of people he may encounter outside the house.

However, the Local Authority has a duty to assess people who ‘may be’ deprived of their liberty, so Steven’s new Social Worker is coming round to do a ‘Community DoL’ assessment on Thursday.

I can’t see that Steven is being deprived of his liberty, but I think there is someone in Steven’s setup who, in practical effect, is being deprived of liberty.  Not, as I say, Steven – he is supervised, but he has a measure of control, and if he wishes to leave, his team enables, rather than preventing, his leaving.  Not the support workers, who have freely entered into a contract to provide services to Steven at certain times in return for remuneration, and who are at liberty to leave and seek alternative work should they so choose.

No, the person who is deprived of freedom is Steven’s father, Mark.  How does officialdom manage this?  By exploiting the fact that Mark loves Steven, while denying Mark’s family relationship to Steven: Mark is classified officially as Steven’s ‘live-in carer’.

When our neighbour across the road developed Alzheimer’s, her nearest relatives – a nephew and niece-in-law – organised live-in-carers for her.  They were called ‘Caring Companions’; they came via a regulated provider; they did two-week turn-about stints with a mandatory two hours off in the afternoon of every day; they were generously paid; and they got the other two weeks a month entirely to themselves, with absolutely no further duties.

Mark, on the other hand, has to be available to Steven at all times when the paid support workers are not present.  He can’t nip out when the notion takes him, if that would leave Steven unattended. There is no provision for short-notice respite to cover illness, for a regular daily break, or even for a block of sleep once in every twenty-four hours.  In addition, Mark is obliged to do a great deal of real administrative work – 115 hours last year, or more than 3 full-time working weeks in 37.5 hours-per-week Local Authority terms – and carry the responsibility of being an employer, all for a financial reward of £0.  He can’t choose whether to support Steven without jeopardising Steven’s liberty and entire way of life.  His liberty to choose when he will support Steven is also curtailed by a social care budget that won’t stretch to the actual costs of providing Steven with appropriate, least restrictive care.

In my view, Mark is, in practical terms, deprived of liberty.  He’s a prisoner of conscience.

On World Social Work Day, that’s a discomfiting thought.

Silly.

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Been reading H.E. Marshall’s Our Island Story with G, in an attempt to supply some sort of chronological framework for the chunks of historical knowledge that G has acquired in school, but has trouble situating in their wider context.  The book, which originally belonged to one of my grandmothers, is a product of unashamed Empire and is hence more than slightly cringeworthy in places, but it has some cracking good stories in it, and is written in short chapters at a level that G can follow without getting bored.

I want G to be able to think critically about ‘facts’ presented (in almost-post-Brexit Britain, an idea of the jingoistic Edwardian nonsense to which some Brexiteers seem to be harking back, can only be a useful addition to the critical-thought armoury), so we’ve been reading a chapter and then discussing it.  We decided, for instance, that the explanation for Stonehenge (that Merlin magicked the stones into position) was not very believable, and we went and did some looking-up to find out how the place is thought actually to have been built.

Today’s chapter was about King Alfred learning to read as a boy; how books, still handwritten on parchment (cue research into and discussion of differences between paper and parchment), were rare and hugely valuable; how Alfred and his brothers competed to be the first to master reading; and how Alfred loved reading ever afterwards.  The chapter is illustrated by a vaguely Pre-Raphaelitish colour plate of an adult Alfred reading what appears to be a blank broadsheet newspaper.  He has a white sheet crumpled in his hand and more on the table in front of him, while other sheets spill off his lap to lie, unheeded, on the floor.

G contemplated it.

“The story said writing was bound in books.  That’s not a book.”

“You’re right, it’s not.”

“That looks like paper, not parshmin.”

“Top-notch observation, G.”

“And books were ‘spensive, so people took care of them.  He’s not taking care.”

“Again, my lovely, can’t fault your logic.”

G stared at the plate for a bit longer.

“Someone’s done silly drawing.”

*****

*****

Petra: Rolling Rocks Uphill.

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Week Two of #7DaysofAction for ATUs has come and gone, and there seems to be very little good news.  When I wrote the end-of-week summary piece for Week One, back in April, I was quite optimistic that Education, Health and Care Plans would in future supply support to ensure that young people would be diverted away from ATUs before they ever got near one.  However, EHCPs do not seem at all to be working as envisaged, being frequently late in arriving and often inadequate when they do.  Then this week, I heard a story to make anybody despair.

Petra is a 20-something mum-of-three.  She has an eight-year-old son, a six-year-old daughter, and a five-month-old baby, and the two older children are both struggling in school.

Petra herself had a mixed experience of school.  She loved learning, but she had trouble writing things down in the way teachers like them arranged.  At secondary school, she especially enjoyed history and English, but again, her written work meant she ended up in bottom sets for all subjects.  Most of her fellow-pupils in these groups were noisy and disruptive.  Petra, a quiet and unassuming person, could neither quell their boisterousness nor study well in the midst of it.  Although she sat a full sweep of GCSE’s, she was ungraded in every single paper and left school without a qualification to her name.

When her son was born, he was found to have a heart defect.  His sister was hospitalised with repeated infections as a baby, and was very slow to walk.  By the time the little girl was four, she was still in nappies and didn’t speak a word.  And by then, her big brother was behaving in a way that was hard to manage.  He slept very little: four or five hours a night; and when he woke up, he woke the whole house up.  Neither child appeared to have any concept of danger, so Petra needed to have eyes in the back of her head.  That’s difficult when you are permanently exhausted.

Social services became involved.  Huge meetings were convened in Petra’s living-room, with every chair and all of the floor occupied by strangers.  Petra and her partner were sent on parenting courses and workers dropped in to watch how they managed the children.  Petra felt criticised and scrutinised.  She did everything that she was told to.  But it made no difference to how the children acted.

Eventually, Petra’s doctor arranged for her daughter to have genetic testing.  The tests came back showing her daughter had a genetic difference.  The rest of the family were tested.  Petra’s son had the same difference – and so did she.

Petra’s own Mum says she spent Petra’s entire childhood voicing her worries about her sweet, slowly-developing daughter, in vain.  She was told, repeatedly, that she was an over-anxious mother.  Now, way too late for help,  Petra was finally diagnosed with a learning disability arising from her genetic condition.  The Adult Speech Therapy service at last assessed Petra’s communication and wrote a report explaining her difficulties, and what services should do to help her understand.  Petra took the report to various departments, trying to find someone to listen to her concerns about her children.  No-one in the Local Authority seemed to hear.

Petra may not have passed any exams, but she knows how to use IT and social media.  Via the internet, she found a support group for people with the condition that she and her children have.  She got information, advice and – a new experience for her – found friends.  With support from her internet friends, and a great deal of effort, she managed to get a Statement of Special Educational Needs for her daughter.  But there were continuing problems.  Her daughter’s behaviour was increasingly hard to understand and manage; she insisted on routines and had great difficulty moving from one activity to another.  If anything was not to her liking, she would kick off into epic tantrums that involved constant screaming, destruction of anything breakable in the vicinity, and physical attacks, for hours on end.  Her daughter’s paediatrician ascribes all this to her genetic condition, but a locum paediatrician described it as autistic behaviour.  Two years later, Petra is still trying to access a formal autism evaluation for her girl, while enduring physical assaults from her daughter that are becoming more serious as the child grows bigger and stronger.

In the meantime her son has been falling further and further behind his classmates.  Now in Year 4, he cannot even manage Reception-level work.  He doesn’t understand how to play with other children in a give-and-take way.  He has no friends and Petra worries he will be picked on and bullied for his oddities.  In July 2014, she wrote to ask for a Statement for him, but her Local Authority told her they were not doing Statements any more because EHCPs were starting that September.  Petra asked, through the school, for him to be given an EHCP assessment.  He has not yet been assessed for an EHCP.  He still has no concept of danger, and is over-friendly to strangers, to his mother’s considerable alarm.  He sleeps no more than he ever did and whiles away the wee small hours, either with tormenting the rest of his family, or with destroying his bedroom: disembowelling pillows and mattresses, picking the paper off the wall and dismantling his toys and furniture.

With all this to contend with, Petra and her partner did not intend to have any more children.  They did not realise baby number three was on the way until relatively late on in the pregnancy, and then they were in a horrible quandary.  It was too late for a medical or surgical termination of the pregnancy.  The option they were told about was a ‘partial-birth’ abortion, which would only be offered if the baby was disabled.  This baby would have the same 50/50 chance of inheriting the same condition as the elder two, but Petra decided she couldn’t face giving birth to a dead baby.  In the end she and her partner didn’t bother with an amniocentesis, held their breaths and hoped.

Petra asked for genetic testing for the baby immediately after birth.  The hospital doctor first tried to dissuade her, then simply failed to send the blood samples off for processing.  Petra, in a near-zombie state from caring for a non-sleeping newborn alongside her two non-sleeping children while recovering from a C-section, had to ask, cajole, insist, and finally take the baby for a second, wholly unnecessary blood draw.  It confirmed what she already feared from observing her infant: the baby also had the genetic condition.

Petra asked for help.  Her partner, as exhausted as she, was suffering seizures brought on by tiredness, her wider family were for various occupational and geographic reasons unable to offer much practical support, and the summer holidays were looming: six weeks without even the respite afforded by six hours’ school, five days a week.  More people came and sat on Petra’s sofa and took notes.  And then… nothing.  No holiday clubs.  No respite care.  No suggestion of what support might be available or forthcoming.  Petra limped through the summer holidays, feeling increasingly hopeless and desperate.  Things came to a head of sorts at the first weekend of the autumn term, when the children, probably stressed after a week of lessons, ran amok.  Petra phoned the emergency social work team and an adult social worker came out to see her the following week.  A friend from her internet group sat in on the meeting and it was agreed that Petra needed a multi-disciplinary team to help her co-ordinate the many health, education and social care professionals involved.  She needed help to care for the children and get them out to school on time, and above all, she needed respite care for the children so that she herself could get some rest.  But organising those things would be the responsibility, not of the adult social work team, but of children’s services.

So yet again, nothing happened.  Half-term arrived, and once more, there was nothing for Petra.  She was offered a meeting with an organisation that runs parenting skills courses and ‘child behaviour support’ programmes, but when she attended, was told it was an obviously inappropriate referral as they had nothing relevant to offer.  No practical help.  No care for the children.  No rest for herself.

I have to admit I am baffled.  How can a household containing four disabled people, including three young children with disabilities, and a fifth person with a serious health condition, get no social care at all?  Why, when the Authority has been ‘involved’ with the family for years, does Petra have to keep going on the same weary round, knocking at the same closed doors?

Why is Petra, as a learning-disabled adult, not entitled under the Care Act to support that will promote her well-being in respect of her personal dignity, her physical and mental health and emotional well-being, and her domestic, family and personal relationships?  Why has she never been offered advocacy services?  Waking night care?  Weekend and holiday respite?  Short breaks?

Why are the children, all of whom have a genetic condition that in nearly every case causes learning disabilities alongside communication and health problems, not all acknowledged to have Special Educational Needs as defined by Section 20 of the Children and Families Act?  Why has no-one from the Authority supported Petra to get EHCP provision for her son?  Why is the genetics service refusing to make any referrals for the baby before December?

Petra, according to her internet friends, is at the end of a stretched-to-the-extreme and frayed-to-snapping-point tether.  She is trying very hard to do it right, but she can’t manage some of the things that have been suggested, like applying for Direct Payments.  Last weekend, they say, she was talking about asking to have the older children taken into care.  Her friends persuaded her to call Social Services’ out-of-hours line again, and once again she got no immediate help… but the following day she got a call from her GP, saying that he had been contacted by the service and told she was unwell and mentally unstable.  Petra, furious, shamed and frightened, assured him that it was ‘just because she had been a bit tired’, got off the phone and back online and swore that was the last time she would ever, ever ask for help.

Unless someone can suggest a way to sort this out fast and effectively, I’ve a nasty feeling that the next time her Authority’s Social Services department hears from Petra, will be when she shows up with her older children, their suitcases and a speech along the lines of, “You’ve been telling me for years that I should do better and don’t need help.  Well, I can’t and I do.  Since you’re so clever, it’s your turn to see how you get on. Let me know how it goes.”

Who could blame her?  I am generally a fit and healthy person; I have just one disabled child, who has high medical needs and learning disabilities but is mostly well-behaved; and in spite of all that, some days I am on my knees.  I can’t imagine looking after three children with disabilities, two of whom are bouncing off the walls 19 hours a day, never mind doing it all as a person with a disability myself.

And then what?  In ten years’ time, will both the children be in, or on their way to, ATUs?  I wouldn’t bet against it.  Yet I would equally put money on it being avoidable, if  just a little support were put in to keep the strains on this family at a manageable level.

That no help is forthcoming is chokingly, nauseatingly shameful.

Pharmacy Tales.

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More repeat-prescription mayhem.  G has had a bit of kit routinely updated, and the new machine needs different consumables.  Our GP’s surgery, like all its peers, is under the cost-cutting cosh, and has been leery, lately, about the quantities of expensive consumables that G requires on a monthly basis.  As it happens, I had ordered an extra quantity of these particular consumables in August, to see us through the holidays, and we had rather a lot still left the following month.  So when, in September, I wrote the request for the repeat prescription to be altered, I added that in the interests of reducing waste, I would carry on using the old kit until all its consumables were finished, but in the meantime, could they please add New Consumables to, and remove Old Consumables from, the repeat prescription list.

Unfortunately, someone at the surgery seems to have taken this as a cue to spring-clean G’s repeat-prescription list of other things too.  G is prescribed Emergency Medicine, which is there to be used if other things fail.  It’s not something G can afford to be without, but it is, thankfully, not something that needs to be used very often.  So we need Emergency Medicine to be on the repeat prescription permanently, but unless G has an unlucky spell, we only have to replenish it when the stock goes out-of-date. The diligent doctor who altered the consumables prescription seems to have removed anything that hadn’t been ordered in the previous three-to-six months from the repeat.

So I wrote another letter, explaining why Emergency Medicine needed to go back on the repeat, even if it is only ordered once every eighteen months or so, and handed it in along with the October requests.  And, with dispiriting inevitability, when I went to collect the prescriptions, the Emergency Medicine was there, but nothing else.

The pharmacy is in the ground floor of a big block that also houses the surgery, several other practices, and various community services, so I headed out to the stairs and went up to the GPs’ floor.  The receptionist was adamant that the prescriptions had been issued, so I went back down again… nope.  Back up to the GP’s once more, where further enquiries revealed that prescriptions had indeed been issued – but not since mid-September.  The receptionist promised to get the October requirements organised as soon as possible, and I trekked back down to the pharmacy, where I buttonholed Sharon, the lovely pharmacy assistant who has been an invaluable ally in previous battles, and asked if she could give me a call when the prescription came through.

Sharon gave me The Look.  “Stuffed up G’s prescription again, have they?” she said.

“Er…”

“C’mon, you need to come and speak to my mate Brónach.  Brón!”  She led me over to another counter.  “Brón! Can you take this lady’s details please and call her when G’s prescription comes in?  They upstairs have made a pig’s ear of the repeats and she’s been up and down like a bride’s nightie…”

Brónach looked horrified.  “Shazza!  You can’t say that in front of a customer!”

Sharon flapped a hand dismissively.  “I can in front of this lady.  Known her for years.  Not the shockable kind, are you, duck?”

I smiled and shook my head.  I didn’t mention that the version of the saying with which I was familiar was even cruder.  Echoing down a decades-long tunnel, from the schoolroom centre to my mind’s ear, I could hear the broad Scots accent of salty-tongued ‘trainee’ Maggie , commenting derisively: “… up an’ doon like a hoor’s drooers”.

The Palace and the Pigsty.

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E goes up as an undergraduate in a couple of weeks.  He didn’t manage to get a place in Hall, and the prospect of him spending his first year in digs was somewhat daunting.  I had visions of an insanitary Young Ones-style flat, but student accommodation these days is considerably more recherché than it used to be.  A trawl of student lettings websites came up with some truly palatial purpose-built apartments.

student-studiostudent-studio-kitchen

Even the ‘shared houses’ have gone way, way up in the world:

student-sitting-3   student-kitchen-4stdent-postgrad-bedstudent-postgrad-bed-2student-postgrad-bath

Very nice.  Lucky lads and lasses, these privileged ones.  Rob Mitchell, Calderdale’s Principal Social Worker (of the Year 2015, no less), taking his own son up for the first time, was also mulling over chance, privilege and good fortune:

Sara Ryan, who has more right than most to an opinion, replied, “You don’t. You just hope with all your heart.”

Mark Neary’s son, Steven, is also in search of somewhere new to live, as his ‘secure temporary’ housing is due to be demolished early next year for redevelopment.  In Steven’s case, though, the search is complicated by his autism, which means that his potential choices are restricted to social housing.

Mark has been bidding for every available social housing property for which Steven might be eligible (very few, as it turned out) and was getting close to despairing of finding something suitable before Demolition Day, when he was offered a direct allocation of a flat for Steven in “an exclusive and stylish new collection of studio, one and two bedroom apartments set within the leafy suburb of Cowley, Uxbridge, surrounded by picturesque parks and plenty of idyllic countryside walks … the perfect combination of peaceful countryside living within a town environment.”

A walk past the place and a peer-through-the-ground-floor-windows inspection confirmed that it was nearly ready for occupation, with carpets and white goods already installed.  The mock-ups of the flat interiors suggested that these affordable flats, like the student ones, could be positively luxurious.  Mark was overjoyed to accept the offer.

So maybe Rob is too cynical?  People with autism, like their student contemporaries, get offered modernity and comfort suited to their needs?

packet-kitchen-sitting packet-bedroom packet-living

The keys were due to be handed over to the Housing Association five weeks later.  Five days before that, Mark found out – quite by chance – that there was a hitch.  Nobody could quite say what, though later rumour suggested major problems with the electrical installation.  But the upshot was that to be sure of getting Steven a new place to live before he became homeless, Mark had to go back to bidding for other, non-direct-allocation housing.

Steven was offered first refusal on another flat – except he wasn’t, because Mark had to make the decision for him before there was time for Steven to see the place.  It wasn’t right for Steven, and with much trepidation, Mark turned it down.

The next flat was the right size and in the right place, but, said the Housing Manager, a bit of a mess.  That proved to be an understatement.  Mark considered it a ‘pigsty’; I think RSPCA officers might have condemned it as unfit even for pigs.

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Mark is swearing off hoping.  Hope, the one thing left in Pandora’s box, and the only thing that wasn’t a curse.  Yet in the face of inevitable let-down, hope can be a curse, one that dooms a person to make poor decisions, or renders them unable to call out wrongs, or causes irretrievable delay as hope prevents action.  And don’t think you can escape by abandoning  hope: the sneaky blighter will turn and rend you with claws of guilt for giving up.

Looking at pictures of the flat, you can see exactly why Mark renounced hope, even before Hillingdon Council declared that Steven was expected to move in immediately; and refused to let Mark have time, permission or a rent-holiday to do the flat up to suit Steven’s needs and tastes.

 And no, I don’t think Rob Mitchell is taking too sour a view of matters social care.  If anything, he’s understating the case.

The End of the Paralympics?

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Been following the #RioProblems hashtag?  Zika, sewage-polluted seas, serious transport problems, empty stadia, fart-flavour green diving pools…  Well, curb your indifference, folks, because it’s about to get worse.  Last week, as the Olympics were ending, news began to seep out of that many athletes might not receive funding to attend the Paralympics, eliminating up to 40 of the smaller competing nations: ‘Situation ‘precarious’ over travel grant delays’, said the BBC.  What might this mean for the future of Paralympic sport?

Come the weekend, headlines emphasising the scope and scale of the calamity were widespread:

BUMPY START: With the Olympics done, it’s time for the Paralympics—which are looking like a disaster

Rio 2016: Hosts ‘spend money meant for the Paralympics on Olympics’

There should, suggested some, be a transfer of monies in the other direction:

Rio 2016: Paralympics ‘should be helped by International Olympic Committee’

And finally:

For disabled people like me, it’s clear that the Paralympics are nothing more than an afterthought

I thought that four years ago.

I loved the London Games, although I was torn between being pleased that the whole Games, Olympics and Paralympics, was a sellout; and bitterly disappointed that despite bidding for a great many tickets for both Games, we didn’t get to attend any events at all.  I was delighted that my friend’s daughter, newly wheelchair-dependent, got to go to two events, was treated like Royalty and saw the top athletes in her preferred wheelchair sport.  We watched as much of the TV coverage as we could and thoroughly enjoyed it.  But there was a niggle, nevertheless.  I’ve just dug out the piece I wrote back then; and notwithstanding Oscar Pistorius’ descent into homicidal criminality a short five months later, I think it still stands.  Comments welcomed.

The End of the Paralympics?

 6 September 2012 at 21:44

Yayy London 2012!  Yayy the biggest and most-widely-watched Paralympics ever!  Yayy 7/7 Underground bombing survivor and double amputee Martine Wright, competing in the sitting volleyball!  Yayy sexy cyborg runner Oscar Pistorius, fresh from contributing to South Africa’s achievement of a seasonal best in the Olympic men’s 4 x 400m relay final!  Only three more days of this fabulousness, and the London Paralympics will close down.  But the Paralympics won’t be ending… yet.

Commentators have been keen to tell us how wonderful it is that it has taken a mere 64 years for the Paralympic movement to grow from a handful of injured WWII ex-servicemen at Stoke Mandeville spinal hospital, having a wheelchair archery competition on the opening day of the 1948 London Olympics, to today’s 4,294 participants from 164 countries.

Prime Minister David Cameron and London Mayor Boris Johnson placed great emphasis on the fact that Paralympic tickets have sold out just as the Olympic ones did (all too well aware of that, BoJo and Dave me old muckers, as we didn’t manage to lay our mitts on a single one).  Channel 4, which is screening the games, (since the BBC got the Olympics), produced cheeky ads saying, “Thanks for the warm-up” and “Now meet the superhumans”.  The opening ceremony featured Sir Ian McKellen and Stephen Hawking CH CBE FRS FRSA, and, like the Olympics opening ceremony, had themes referencing Shakespeare’s ‘The Tempest’.

But.

I watched the Paralympic cauldron being lit, and not only was it déjà vu, it was rather cut-price déjà vu at that, since the Paralympics have fewer competing nations, so this cauldron had fewer components than the Olympic one.  The torch used to light it, incidentally, was the same design as the Olympic one – but the silver of a second-place award, instead of gold.  The Paralympic flag originally had five curved ‘agitos’ symbols, in the same bright colours as the Olympic rings, but the International Olympic Committee objected, and the ‘agitos’ have been reduced to three and their hues muted.  Despite Seb Coe’s avowal that “We want (London 2012) to change public attitudes towards disability, celebrate the excellence of Paralympic sport and to enshrine from the very outset that the two Games are an integrated whole in every way”, it is evident that the Paralympics are still seen as the poor relation, the second-rater, the inferior to be patronisingly condescended to.  Sound familiar?  Anybody with experience of what Frankie Miller calls ‘disability world’ will recognise it instantly.

Listen to the Paralympians themselves, being interviewed.  “I’ve been training for years for this moment.” “It’s brilliant having achieved this (medal).  Training is horrible sometimes, so hard, but now it’s all worthwhile”  “We’re not ‘supercrips’, we’re athletes”.

Quite.

At one point during the opening ceremony, the Channel 4 commentator referred enthusiastically to ‘Team GB’.  Then hastily followed up with, “Sorry, I mean ‘Paralympics GB’”.  I don’t shout at the TV very often – honestly – but that had me bellowing.  Paralympians DO NOT go into the arena representing their disability, they go out representing their COUNTRY.  Just like Olympians.  Why the hell shouldn’t Paralympians be entitled to call themselves part of ‘Team GB’?  (Let’s leave to one side the fact that it should be ‘Team UK’ or ‘Team GB and Northern Ireland’…).

The Paralympics made great viewing.  This year’s may have been the biggest, and, for all I know, the best Paralympic Games ever – but I wish it were the last.  I would prefer never to see another.  I want to see the Paralympics and the Olympics fully integrated (and, what’s more, be buggered to any ‘Special Olympics’ ghettoisation).  I realise that it will cause huge logistical problems to accommodate all the athletes simultaneously and provide enough facilities for everyone, but problems are there to be solved, people, have a little ambition!  Of course, it’s too late for Rio, where the preparations are already underway for 2016, but we really ought to see the Usain Boltalike of 2020 foreshadowed or followed by twentytwenty’s Jonnie Peacock-equivalent, the Marianne Vosses and Sarah Storeys of eight years hence competing in different events but the same time-frame.   I want to see Olympic wheelchair fencing and Olympic blind football. 

Long, long before ‘the Paralympics come home to the UK’ for a third time, I want elite sportspeople with disabilities to be off the fringes and getting well stuck in to the middle of things, right beside and in amongst all the other elite athletes, where they belong.  I want the Olympics living up to their declaration that “The practice of sport is a human right. Every individual must have the possibility of practising sport, without discrimination of any kind and in the Olympic spirit, which requires mutual understanding with a spirit of friendship, solidarity and fair play…. Any form of discrimination with regard to a country or a person on grounds of race, religion, politics, gender or otherwise (my emphasis) is incompatible with belonging to the Olympic Movement.”

So yes, I want the Paralympics not just to end, but to be ended.  Abolished.  Included.  Different is Good, and Difference must be seen as an integral part of all the other Good things.

7 Days, Take Two.

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The September 2016 #7DaysOfAction is cranking up.  From 7 dudes last time, the campaign is currently up to 35, and seeking as many more people and families as care to come forward.

The people who have come forward so far have been asked three questions:

  1. How did you come to be admitted to an ATU?
  2. Since when, or how long for if you’ve left?
  3. How far away from home were /are you?

Most people were admitted for reasons other than specific needs for assessment or treatment:

ATU Admission

Assessment and Treatment Units are supposed to be short-term placements to get a person who is having a wobble onto an even keel and ready to return to their place in the outside world.  Only one of the people spent less than six months in a Unit.  He did not, however, return to his place in the outside world.  After three-and-a-half months, he died in the said Unit, owing to neglect by Unit staff and management.

ATU Detention

About half the people in ATUs were taken a hundred miles or more from home.  Most shockingly, one currently-detained person’s family had been kept for three months in ignorance of his location and still did not know his whereabouts, so had no way to check on his welfare.  He has vanished into the system.

ATU Travel