Alarming.

Tags

(un)accountability, autism, care in the community, charities, coroner, court proceedings, independent living, inquest, institutions, learning disability, true stories, voluntary organisations

Another week, another inquest. Actually, this week, two of the ghastly things: Oliver McGowan‘s in Bristol and Danny Tozer‘s in York.  The Bristol Post is doing a sterling job of summary reporting of what was done to Oliver and how it is being presented in court (big shout-out to the Post’s education reporter, Michael Yong, whose coverage of this epitomises local journalism at its finest).

Meanwhile, George Julian is live-tweeting Danny’s inquest.  There are grim similarities between the treatment of both these young men, and also with what was done to Connor Sparrowhawk.  All three had epilepsy, autism and varying forms of learning disability.  All three had their epilepsy discounted, being treated as though its symptoms were behavioural or mental-health problems, rather than signs of a physical brain malfunction.

Danny’s epilepsy manifested itself as tonic-clonic seizures, the sort that used to be called ‘grand mal’.  It was known that if one of Danny’s seizures lasted more than five minutes, he needed medical attention, and it was also known that he was susceptible to seizures at any time.  The logical inference to be drawn from this was that Danny shouldn’t be unobserved or unmonitored for more than five minutes at a time, but the implication seems to have eluded the people supposed to be looking after him.  He was routinely left for ‘fifteen to twenty minutes’ in the morning for ‘private time’ (masturbation).  Danny’s Mencap ‘independent living placement’ (rebadged residential home) had installed a seizure monitor in the form of a movement-detector placed under his mattress, linked to a remote audible alarm.  But when went off during Danny’s ‘private times’, this appears to have been assumed to be due to his movements while masturbating, rather than to any resulting seizure activity.  It also ‘was going off frequently throughout the night’, according to John Andrews, the waking night worker who gave evidence yesterday.  He reported the fact to his managers.

The alarm, appropriately for an emergency warning, was loud: “Like a fire alarm”, according to Angela Stone, one of the day workers.  Inconveniently loud.  “It was going off disturbing everyone” said Ms. Stone.
So the engineers were called to ‘tweak’ the monitor.
“It was a case of getting the settings right”, explained Ms Stone, adding, “I don’t know where I’ve got the word settings from.”
That suggested that some, at least, of the people working with Danny misunderstood the gravity of his condition.
Ms Stone was categorical: “I felt <bed> was a safe place for Danny, we had the mat, we knew that worked, he wasn’t seriously epileptic.”
Myself, I can’t imagine in what universe repeated tonic-clonic seizures are considered ‘casual’ epilepsy.

There was no mention, yesterday, of what clinical advice, if any, was provided to the engineers to ensure the revised settings were still suitable to keep Danny safe, nor any mention of a medical opinion being sought about the ‘frequent’ alarms.  Tellingly, when Danny was found in bed, grey and not breathing, on the morning of his death, the forceful, rhythmic activity of cardio-pulmonary resuscitation did not trigger the system.
“It suddenly struck me after everything was over”, said Ms. Stone, “We’d not heard the alarm go off. I couldn’t get my head around why we hadn’t heard the alarm go off.”
In a gruesomely farcical passage, she described herself and her manager checking the alarm:
“So Rachel, the manager, and I went to Danny’s room to look at the mat, that was the first thing that occurred to us, something had happened, something was wrong. The mat was on, the light was green.  Rachel showed me how you had to move around in a certain way to set the alarm off, and the alarm went.”
“Who got on the bed?” asked the coroner.
“Rachel,” said Ms Stone.  “I didn’t have a clue how to do it.”
Nope. No clue.
Is it possible that the sensitivity of the mat’s ‘settings’ been so narrowed as to render the sensor useless for practical clinical purposes?

Jo Fannon, Danny’s 1:1 worker on the morning of his death seemed nearly as uninformed.
The Tozers’ barrister, Ben McCormack asked her, “You mentioned earlier that the only time you’d heard it was when he was having private time, was there any chance anyone would have turned it off?”
“No,” said Ms Fannon, “You’d never turn it off.”
“Had it ever been set off by someone sat on the bed talking to Danny?” asked Mr. McCormack.
“No,” said Ms. Fannon. “It required momentum.”
Mr. McCormack persisted.  “You mentioned it was changed, were you aware of the defects, what was wrong?”
“I wasn’t aware of the defects,” said Ms Fannon, “But it was replaced.”

I may have mentioned that G uses a number of machines.  They alarm from time to time.  If they do, I NEED to know why, in order to be sure that the action I take is appropriate and also to be aware for the future if there is a pattern of events.  If there is a pattern of events, I need to know the underlying causes: Is G unwell, or is there an intrinsic flaw in the tech?  Machines provide information.  Some do a limited amount of analysis for you, within human-defined parameters and algorithms.  They do NOT replace thinking, and they are absolutely pants at intuition and human empathy.  It’s more than regrettable that some people don’t seem so hot on these human functions either.

Now, we all know there are numpties who will take the battery out of their smoke alarm because their inability to master Toast-Making Without Charring means inconvenient decibel-levels.  But I was trying to imagine what staff would have done if a real fire alarm had gone off.  And I bet it wouldn’t have been to call out the engineers to modify the noise.

“Hi, Maple Avenue here, can you send out engineers to turn the fire alarm down? Keeps making a helluva racket. We want it so it only goes off if the fire moves in a certain way, with a bit of momentum.”

Quite apart from anything else, they’d have been as at risk as the residents of getting fried.  Because it would have been their lives on the line, and not just Danny’s, they’d  have dialled 999 for the Fire Brigade, straight away, no question.  So why were the engineers, not the emergency (medical) services, called for Danny?  Did he as an individual not matter?

It’s worse than alarming.  It’s terrifying.

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Lego Lessons.

Tags

care in the community, family, true stories, voices of disability

Grenouille got a load of fancy Lego for Christmas.

Does it make me sound antediluvian to say that my kids’ Lego is not at all like the primary-coloured 2/4/6/8-spot blocks I remember playing with?  It’s all movie tie-ins; you have to follow whole books’-worth of immensely complicated diagrams in order to achieve the final creation.  Eldest has a Star Wars battle cruiser still reposing on the shelves in his now-abandoned-except-in-the-holidays bedroom, while G is making something from the ‘Lego Ninjago Movie’.  Yeah, me neither.  G and New(ish) Support Worker took themselves off to see this Ninjago caper one Saturday afternoon, and I haven’t the foggiest what it’s all about.

Anyway, along with the massive main item, G has a crowd of tiny Lego figures, mostly vaguely Oriental-looking, and one of them is carrying two buckets, each smaller than the lid of a toothpaste tube, one at either end of a shoulder-pole.  The buckets/pole combo did not come ready assembled, although the buckets themselves already had their handles on.  Unfortunately, push the buckets onto the pole the wrong way, and the handles detach; as G discovered this afternoon.

“Mu-um!  Can you help, please?  Fix this?”

I sat trying to wrangle a centimetre-long handle onto the minute bucket.  I’d get the tiny dimple on one end of handle lined up over the pinpoint-sized cone on the side of the bucket, but it would slip off before I could get the other end to click into place.  After several unsuccessful minutes, I said, “Blimey, G, this is really difficult!”

G regarded me with a weary air and sighed.

“Welcome to my world.”

*****

*****

Meet Mr. Matty.

Tags

#justiceforallthedudes, adult LD services, care in the community, intellectual disabilities, learning disability, true stories

Today, I have the honour to introduce to you, Mr. Matthew ‘Matty’ Brandon, aka ‘Mr. Smiles’.

Matty grew up in Saskatchewan, with a couple called Chris and Shannon Gardiner, who have looked after him ever since he was a small boy.  Matty has multiple disabilities, including cerebral palsy and autism.  He is non-verbal and needs his routines. So as he approached adulthood, Chris and Shannon devised a life for him where he could continue to live at home, attend a day programme, and get family-based respite care at weekends, to allow them to have a break and to broaden Matthew’s base of support. But in 2012, when he was 21, Saskatchewan Provincial government agencies decreed that as an adult, Matthew should move into residential care in a group living facility for people with intellectual disabilities.

The Gardiners fought long and hard to keep Matty out of the group facility, which they knew would not cater for his needs, and with which he would not cope.  But they could not stop the State juggernaut.  Matty was to be removed from the only home he could remember and dumped in unfamiliar surroundings with people he did not know and whom he could neither understand, nor induce to understand him.  However, after Matthew was injured, physically and psychologically, during the transition process, the Gardiners put their foot down and kept Matthew at home.

Saskatchewan responded by cutting off Matty’s funding.  The Gardiners, enmeshed in a bureaucratic nightmare, strapped for cash, but determined to give Matty a good life, began looking for ways to keep him occupied for free.  They also began building an online community for him, as well as an offline one.  They found their local library, which was good – interesting but not too noisy.  They set up a Facebook page to show all the things that made Matthew’s life enjoyable and worthwhile.  Then one day they discovered that their local Royal Canadian Mounted Police Depot Division – the RCMP cadet training school – held a ‘Sergeant Major’s Parade’ every Tuesday, which the public could view.  They were not sure if Matthew would cope with all the noise (the parade involves a brass band), but they gave it a whirl.  And Matty loved it.

Soon, the parade became the highlight of Matty’s week.  He would video it on his iPad and play the videos over and over.  Fair play to the detective skills of the RCMP, it did not take them long to clock that the same striking-looking, tall, burly young man was turning up to every parade and paying the closest of interest.  And having noticed him, they began to ask questions, then think about what they might be able to do to enhance his experience.  First, he was invited to meet individual Mounties.  Then, at the end of the parade, he was invited to tag along at the back, escorted by a couple of senior officers.  The Depot staff would give him occasional gifts of RCMP memorabilia. On his 25th birthday, bursting with incredulous pride and wreathed in the widest of his famous smiles, he was made an honorary cadet, with a full uniform specially tailored for him.

Then he got to meet the horses of the Musical Ride.  Not only has Matty been having a whale of a time, he has also, just by showing up and joining in, educated a generation of RCMP recruits about interactions with people with learning disabilities.  Like Steven Neary’s contribution to UK Human Rights law, Matty’s contribution to Saskatchewan civic life should not be dismissed or underestimated.

After several years of intense negotiation, the Gardiners succeeded in – well, I’ll let Chris tell you:

“Matty now receives SDF (Self Directed Funding), has his own agency and we were able to define and create delivery on what you see here on the page year round. Something “Person Centered” and a life plan that works for one of Saskatchewan’s most vulnerable citizens. We are thankful for this, only wishing it might have been easier a process in working with the system but are hopeful that the work put into Matty’s file makes it easier for others of similarity in the future to endure less trauma and challenge moving forward where transition planning occurs.”

With a framework of the predictable, Matthew is able to cope with the occasional surprise.  The Gardiners continue to introduce new experiences at intervals.  Matty has two friends, Sami and Nick, who take it in turns to host him in their homes at weekends, to give the Gardiners a break and to ensure that when the day comes that they have to step back from caring for him, there are other, familiar people around who can pick up the baton and run with it.  Matthew’s online community continues to grow, which is an important part of securing his future welfare, as in State care he would be subjected to a draconian ‘confidentiality’ regime that would obliterate him from view.  While the Depot parades have been a highlight of Matthew’s week, the regular posts about him, with photos and videos of him enjoying his time at the Depot, have been a highlight of mine for years now.  Do mosey on over and make his acquaintance here.  It’ll brighten your week too.

Matthew still needs all the support he can get.  Chris reports this week that:

“With Shannon away for a visit with her family/friends in her home town … and with me requiring a bit of focused time here at home with “must do” projects, our special man spent a couple extra nights away at his friend Nick’s. This time apart … replenishes all of our energy levels to a workable place and is why we designed it to be family focused, with us, or apart from us with friends he has built trust and harmony with. The goal is to make it so fluid that we all become interchangeable units of the same body, a transitional reality that needs to be in place in case any of us fall from ability to serve Matty’s best interests at any point in time. Both Nick and Sami have been along for the ride, a roller-coaster at times, and both have built beautiful trusting relationships with Mr Smiles, adding to this wonderful thing we have so carefully put in place together. Tonight I celebrate this irreplaceable effort but condemn a recent development which has created disharmony to it by an apparent policy glitch someone seems to have made their mission to see through. If they got their way, Matty would have to part ways with both Sami and Nick, an outcome that would be so very contrary to all the work both have put into the SDF project and Matty’s “Person Centered” program. As we have been through this before, we will not tolerate some arbitrary bureaucratic interference which ends in reckless harm where Matty is concerned and is why we are dropping this potential risk here with our many friends in case we have to fight back after it has gone too far. “

Sigh. It seems that Whistler’s Mother’s twin – or possibly clone – is alive, and well, and acting the interfering old trout in Saskatchewan.

Love and Affection and Dirty Words.

Tags

assessment, care in the community, fostering, human rights, mothers, social work, true stories

Read a couple of good blogs this week on love and social care.  In case you missed them, here are Damn – Forgot My Mantra from Mark Neary and The Saturday Boy from Rob Mitchell.  In both, ‘love’ and ‘friendship’ seem to be social-care dirty words.  Actually caring about somebody, rather than just doing care-tasks for them, is frowned on: inappropriate personal involvement.  I remember the former student at the 2014 LDS conference talking about how a gentleman for whom she undertook a direct-service rôle had referred to her as ‘a friend’ and she had corrected him.  She couldn’t, she told him, be a friend while she was paid to spend time with him.

I don’t think the attitude would be much of a surprise to the general public.  Second Youngest Uncle and his other half don’t have children (unless you count the half-dozen-plus canine ‘fur babies’ who have landed in their lives from time to time – rescue dogs all) but 2YU has had the idea of fostering and/or adoption in his head for the best part of twenty years.  And now that he and R are settled in their dream house – a six-bedroom former vicarage near the sea – they are in a position to offer the sort of home they would like to.  So the week before last, they went to an open evening at a fostering agency, to see what it entailed and whether they might be considered.

The lady running the evening gave a bit of a talk on how the process worked, and asked the participants – about 30 people, mainly couples – what they thought foster-children would need from them.  Structure, said someone.  Routine, said someone else.  Predictability.  A sense of safety, said a third. A healthy diet of foods they liked, suggested a fourth.  And activities.  The suggestions kept rolling in; but Second Youngest Uncle, he told me, was getting twitchier and twitchier.  All this talk of foster-parenting and foster-families and nobody was mentioning the most important thing of all.  Was it a dirty word?  Were people afraid that if they said ‘love’, it would be misconstrued?  If he said it, would he be given the bum’s rush out the door for inappropriateness?  But then he realised that if love wasn’t permitted as part of the deal, he wouldn’t want in anyway.  Eventually, he put his hand up and when the agency lady turned to him, he said, rather self-consciously and tentatively, “Affection?”

The agency lady flung her hands wide and practically shouted, “Yes!  Thank-you!  LOVE!  Children need LOVE!  They need hugs and pats-on-the-back and to sit on someone’s lap for a cuddle when they’re upset!  Now, you may be worried about what’s acceptable and what’s not, and certainly there are boundaries that you must observe, but we will teach you appropriate ways to demonstrate affection.  You will not need to keep your kids at arm’s length, quite the reverse!”

Later on, an experienced foster carer gave a warts-and-wonder account of his time as a foster-dad: the stomach-sinking feeling when things didn’t go well, and the huge joys when they did.  He spoke of his distress when one long-term foster-child was returned, despite his forcefully-expressed misgivings, to a precarious home situation; only to re-enter care fairly soon thereafter, for the same reasons as before, but carrying an even bigger burden of trauma.  If you are prepared to open your heart to children in need, you must, he warned, be prepared to have it broken at times.  On the other hand, several of his former foster-children have kept in touch after leaving care, and come back for big occasions and the odd Christmas, bringing girl- or boy-friends, then partners and even babies.  He never imagined he would end up with foster-grandchildren, and they are the most delightful bonus.

The day after Second Youngest Uncle had spent an hour debriefing over the phone to me about the evening, Grenouille’s Children’s Social Worker came to visit.  When we started in on the EHCP process, far too long ago, one of G’s expressed wishes was to be able to go out and about, maybe at the weekends, without having to drag Dad or Mum along everywhere. And, said G, I would like my helper to be a young person, like E (one of the medical respite carers, an early-twenty-something) not somebody middle-aged like my TAs.  So G now has a PA, very energetic and up for all G’s notions… but at least twice the age G was thinking of.

A second person needs to be recruited to cover all the assessed hours, so this time, said G, could it PLEASE be a young person?  T is great, but I want to feel like I’m going out with a friend, not a parent!

I did wonder if the f-word would give the CSW the collywobbles, but it did not appear to.  “Of course!”  said the CSW.  “Somebody your age doesn’t want to be going out with – well, not an old fuddy-duddy, it wouldn’t be fair to say that, but someone who is fuddy-duddy age!  I’ll speak to the recruiter and see if we can get a younger person for you.”

G smiled broadly and after a bit more chit-chat, the social worker asked to have a look at G’s bedroom.  I sensed my frown-muscles twitching, in much the same way, no doubt, as Second Youngest Uncle’s had been.

“Why do you need to see G’s bedroom?  The support workers won’t be working in there – they are for going-out, not staying-in.”

“Oh,” said the CSW, “It’s just a box-ticking thing – I have to see the child’s bedroom – not every time, I know G has a lovely room, but I have to check it at intervals.  Actually, G, I should say, can I see where you sleep,” – she turned to me, “…I once got a child to show me their room, but when I asked where they slept, it turned out to be in an old airing-cupboard.”

I felt my eyebrows rebound up towards my hairline.  “Would you like to inspect our airing-cupboard as well?  I guess it would be big enough for a bed, if it weren’t already full of hot-water-tank and linen-shelves!”

“Oh, no,” the CSW assured me.  “Just the bedroom.”

“Well, actually,” I said, abandoning sarcasm as a lost cause, “I think this bedroom-inspection thing is a bit of a cheek.  G is a child in need by reason of disability, not because there are child-protection concerns.  Given that, I don’t see why you need to go into the private areas of our house.”

“It’s literally so I can tick a box.  Seen the child?  Tick.  Spoken to the child?  Tick.  Seen where the child sleeps?  Tick.”

“I still don’t see why you need to go up there.  The medical respite carers are in there once a fortnight when they do an evening stint and put G to bed.  They have safeguarding responsibilities like any other professionals; do you not think that they would report it if there were anything amiss with G’s sleeping arrangements?”

“I don’t mind,” interjected G.  “It’s my room and I don’t mind.”

“Okay,” I said, reluctantly.  “It is your room, as you say.”

Inspection made, the CSW departed, but I still felt niggled.  “Not that you could have done anything about it,” said an acquaintance, when I voiced my irritation.  “If you’d refused, it would have been, obstructive mother, what’s she hiding?  Red flag on the file!”

Yes, I thought, that is what has got me so narked.  It’s the coercion behind the intrusion.  It may be G’s room, but it’s MY bloody house, and if I don’t want a damned social worker walking up MY stairs and along MY landing to inspect G’s room for no better reason than to tick a box, why can’t I sodding-well refuse permission without eliciting suspicion?  It may seem a relatively trivial reason to invoke them; but where, exactly, are my bloody Article 8 rights?

In our house, the dirty words are not ‘love’, ‘affection’ and ‘friendship’.

They’re ‘box’ and ‘tick’.

Taking Liberties.

Tags

adult LD services, care in the community, Deprivation of Liberty, DoLS, independent living, Mental Capacity Act

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.

The Palace and the Pigsty.

Tags

adult LD services, care in the community, independent living, Local Authorities, true stories

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.

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

  

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:

1/2 Taking my son to Uni. Reflecting on what it must be like for those whose children rely on social work & social care.

— Rob Mitchell (@RobMitch92) September 10, 2016

2/2 How do you trust the state to care for the most cherished & loved person in your life, when they narrative is continued failure?

— Rob Mitchell (@RobMitch92) September 10, 2016

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?

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.

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.

Here Come The Girls.

Tags

#justiceforallthedudes, care in the community, independent living, institutions, kindness, Local Authorities, NHS

Six weeks ago, I was wondering, “where are the girls?”.  A couple have emerged onto social media since.  Although neither is in exactly the same situation as the lads who featured in The ATU Scandal #7DaysofAction, I am noticing same old themes of waiting until a situation turns into a crisis, counterproductive provision, failures to keep safe, the dangers and indifference of total institutions, isolation, the powerlessness of loving families, the difficulties of leaving an ATU, financial skewing that makes it advantageous for mental-health provision to hang on to people and disincentivises Local Authorities from bringing them home, and terrible, all-pervading, stress and fear for inmates and families alike.

Sophie doesn’t have a learning disability, as far as I am aware, but she does have bipolar disorder.  She is currently in St. Andrew’s hospital in Northampton.  This hospital, a very large one headquartered on the old Northampton ‘lunatic asylum‘ site, is not actually part of the NHS; it is a private institution with charitable status that bids for NHS contracts.  Sophie’s family, who live in Middlesex, have concluded that the hospital is not suitable for Sophie.  According to the petition for her transfer, it’s making her life and her family’s life hell.  The family have tried everything they can think of to get her home, but “nothing works”.  Her family believe she is treated badly where she is and is not kept safe.  Sophie has managed to self harm on many occasions, sometimes very seriously.  Her family are ‘desperate’ to have her closer to home so that they can support her.  They say: “Sophie is 21, she is a beautiful, caring, lovely young lady who just wants to be with her family.  She suffers with bipolar but she is not a criminal, so she should not be locked away like a prisoner.  To be honest, prisoners have a better quality of life than Sophie does in St. Andrew’s.  She doesn’t receive basic human rights and is not kept safe.  We need her closer to her loving family.”

The second young lady is not in an ATU – yet.  Her name is Emily, she is 19 and profoundly disabled by her autism and learning disabilities.  She needs 24-hour, 3:1 care.  For the last few years, she has been living in a residential school with visits to her parents’ home in Shropshire, but in less than three weeks, when term ends, she will have aged out of the school system.  So far, she doesn’t have anyplace else to live either, despite her family’s long-running and increasingly frantic efforts to find her a home of her own with proper supports.

They have been through all the hoopla of trying to secure her a liveable income (which was initially denied) and a house.  They have been asking their Local Authority and Social Work departments for help and support, which has been in very short supply and seems mostly to have consisted of ‘signposting’ to providers.  Wrong boxes were ticked by official form-fillers, meaning that Emily has missed out on some potentially suitable houses.  Those which were offered are all unsuitable for one reason or another – too far from family, too small, too insecure.  The only currently empty property which, according to Emily’s swathe of professional therapeutic and medical reports, is suitable, is said to be in leasehold limbo between the Council and the Housing Association.  Apparently, it will not be made available to Emily anyway, because it is earmarked for adults returning from ATUs.  But if Emily doesn’t have somewhere of her own to live in two-and-a-half weeks’ time, she will end up in an ATU.  Her family have been told that, absent a home of her own, there will be no other options.

Let’s just think about that for a minute.  Emily’s education, health and social care professionals have known for nearly two decades that Emily will always need care and support.  Her 18th and 19th birthdays can have come as a surprise to no-one.  Yet there has been no forward planning for the end of her schooldays.  Unless someone does something very soon, Emily will be placed in a facility intended for (a) assessments (which have already been done – exhaustively), and (b) treatment (which she doesn’t need and which can’t help her since she has autism, not a mental illness).  She will be in uncongenial surroundings that will be very likely to exacerbate her difficulties with making sense of the world, and she probably will be subject to the forensic, carrot-and-stick, behaviour-modification-restraint-and-heavy-medication regimes that have left too many dudes in a terrible state; and the prospects of which have Emily’s mother in agonies of terrified apprehension.

Yesterday, whilst her father was travelling to visit yet another far-flung shoebox property remote from Emily’s family and home town, the car encountered a pothole that has left it inoperable due to suspension problems.  It’s not the only thing that is breaking down.  If Emily ends up in psychiatric care, I fear her Mum may just be driven to join her, as the strain is very obviously getting to within a whisker of being too much for her.

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Health and Capacity.

Tags

#7DaysofAction, #justiceforallthedudes, assessment, autism, care in the community, learning disability, Local Authorities, NHS

So I was doing some background reading for a piece I was writing for #7DaysofAction and it involved trying to get a good grasp on the Mental Health Act 1983 (as amended by MHA 2007) and the Mental Capacity Act 2005 as they apply to ATUs and other NHS provision, in order to understand how what has happened to so many autistic young people came to happen.

For a non-lawyer, it was a bit of a brain-melt.

The Mental Capacity Act is intended to protect people who lack capacity to make their own decisions.  If there is a reason to suppose that a person is incapable of making a particular decision because of a cognitive impairment, then someone else can be designated to make that decision in the person’s best interests.  The decision-maker has to take into account the person’s preferences and ensure that in each case, the decision made is the ‘least restrictive option’.  When it comes to decisions around where a person should live, there’s a whole extra layer of protection – the ‘Deprivation of Liberty Safeguards‘ or DoLS – intended to make sure if a person is in hospital or a care home, that person lives in the least restrictive environment that can meet their needs.  The Safeguards require the professionals making the decision to show that the proposed restrictions on the person’s liberty are in his or her best interests, and to arrange for the person to have independent support (an Independent Mental Capacity Advocate, or IMCA) to help evaluate and challenge the restrictions.

So far, so good; but the DoLS require the organisation which is applying for a DoLS authorisation to restrict someone’s liberty, to certify that the person ‘has a mental disorder’; and to consider whether they should instead be considered for detention under the Mental Health Act.  The MHA is much more wide-ranging than the MCA; while the MCA is exclusively concerned with capacity, the MHA provides for a plethora of situations in which people may need to be compulsorily treated for a mental illness, including where they are a danger to themselves or others, and where they have committed or are accused of a crime.  Although the statutory guidance under the Act – the Mental Health Code of Practice – says that the person receiving treatment should be involved in its planning, that his or her wishes should be taken into account, that family and/or carers should be involved unless the patient asks for them not to be, and that treatment should be given the least restrictive way possible, this sits uneasily with the forensic, criminal-justice parts of the Act.  Patients are also supposed to have support from an Independent Mental Health Advocate (IMHA) to enable them to understand their rights and  to support any appeal to Mental Health Tribunal against continued detention.  Yet even when the person is detained under civil provisions, the treatment regime for patients with learning disabilities seems to have a strong forensic flavour, along the lines of: demand complete compliance with a regime of generic treatment and prescribed behaviours, unmoderated by any reference to the person’s particular condition(s) and needs; and apply restrictions and sanctions for any failure to comply.  Look at what is happening, today, to Eden and Jack.

The Mental Health Code of Practice was extensively revised in 2015, in the last few months of the Coalition government.  It now contains a whole, separate chapter on learning-disabled and autistic people and the relevance of the Mental Health Act to their care.  It is explicit that inpatient services are not relevant to people with autism or learning disabilities who are not mentally ill; that long-term residence in NHS care is not appropriate.  It contains the phrase, ‘hospitals are not homes’ and is clear that behaviour is communication and that ‘challenge’ is often incorrectly construed as the person being challenging, when it is actually the environment that is challenging the person.  The 2015 Code says that the Mental Capacity Act should be considered and applied along with the MHA; no more MHA automatically trumping MCA.  Read it for yourself.  Chapter 20.

‘Treatment’ is often not appropriate or even applicable: what people need when they are finding the everyday world difficult to navigate, is support.  And a person doesn’t need to be in hospital to get support.  In most cases it can be perfectly well provided in their own home.

A year on, the recommendations of the Code of Practice are taking far too long to trickle down into practice, which is why I am delighted to see that five families are collectively challenging the lawfulness of their autistic and/or learning-disabled family member being detained under the Mental Health Act when it is not (or is no longer) true that:

(a) he is suffering from mental disorder of a nature or degree which makes it appropriate for him to receive medical treatment in a hospital; and
…
(c) it is necessary for the health or safety of the patient or for the protection of other persons that he should receive such treatment and it cannot be provided unless he is detained under this section.

I wish the dudes and their families all the best and have everything crossed for a definitive win, because at the moment, MHA culture seems to be eating policy and strategy for breakfast, elevenses, lunch, afternoon tea, dinner and supper.  Here’s hoping the law will prove a lot chewier.

Dr. Crapshite Revisited.

Tags

adult LD services, appropriate vocabulary, care in the community, kindness, learning disability, medication, voices of disability

I must be spending far too much of my time reading off electronic devices these days, because I was thumbing through my copy of There’s Always Something or Other With Mr. Neary, and when I had read the 1 September 2012 entry, my first impulse was to start jabbing the page with a forefinger to add a comment.  Oops.

One of my more eccentric computing tutors used to say that if paper had been invented after the silicon chip, everybody would think it was the bees’ knees.  “You don’t need batteries!  You can build your own basic matrix from plant fibres!  You can write to it with a carbon stick!  And the refresh time is up to a thousand years!”  As this was well before the invention of the tablet computer, he didn’t add, “But however hard you poke at the side of a book, you won’t find a backlight for reading under the bedclothes!”  I have to remember that for myself.

Anyway, the piece in question is about Steven Neary’s twice-a-year visits to the psychiatrist.  The trick-cyclist seems to be a rather unpleasant fellow; when Steven proffers his hand, as he has learned it is polite to do, the psychiatrist refuses to shake it.  He then avidly notes the distress that this can cause Steven and blames Steven’s resulting behaviour on his father and support workers for ‘failing to set boundaries’.

If Mr. Neary senior remonstrates with him, the psychiatrist  goes into Sly Game Playing Mode:  “It looks like the conflict increases your anxiety, Mr. Neary”.

I want to ask Dr. S., “That being so, why are you provoking conflict?  What are you getting out of making Steven miserably disoriented and his father stressed?  It doesn’t seem a very professional way to act, more a sociopathic/sadistic one.  Quite apart from professional considerations, to refuse to co-operate in a conventional exchange of courtesies is simple oikish bad manners.  You’re being plain rude.”

Steven’s father once tried to let Steven down gently by suggesting that Dr. S. had a sore place on his hand, but it didn’t help, as Steven then wanted to see the scab.  I have a fantasy in my head of Mr. Neary telling Steven the truth, and reminding him in the consulting room: “Dr. S. doesn’t shake hands, remember, Steve?  Dr. S. doesn’t shake hands because…?”

“Because he’s an arsehole, Dad.”

An Outbreak of Sanity.

Tags

care in the community, Down syndrome, LB Bill

Good news from the north-west: the Calvert family have won their case to have family member Mike offered a home in his own community.

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Mike was born with Trisomy 21, and has led a full and productive life, working for 20 years in a local factory that produces labels and packaging.  A few years ago, he had to give up his job when he began to develop dementia and limitations on his mobility.  Michael is a gentle, kind and loving man, but at age 47, he now has high care needs, which his immediate family are having increasing difficulty with meeting in full.  Reluctantly, they have come to the decision that it is time to seek twenty-four-hour, paid-for, care for Mike.

Mike’s mother Marilyn and his younger sister Jennifer had found a ‘fantastic, ideal’ place for Mike in his hometown of Wigton, just around the corner from his friends and family, and everything looked to be falling nicely into place until the local commissioners for care refused to give approval for Mike to live in the Wigton home.  They suggested that a place in Workington (22 miles away) or Maryport (16 miles) might be suitable.

For anybody with dementia, being removed from the familiar is unhelpful and disorienting.  For Mike, who has lived all his life in Wigton, staying local was vital. The family decided they had to go public with the story, and were overwhelmed with support in Wigton.  Local news organisations picked up the story after Jennifer started an online petition in mid-December 2014.  Over 155,000 people (thank you each and every one) supported her call for Mike to be cared for near his friends and family.  “He needs us and we need him”, said Jennifer.

On 19 January, the commissioners met to reconsider their decision.  They concluded that Mike could go to the place that his family had found, one street over from his mother’s house.  The family have found campaigning for Mike’s future while still caring for him ‘exhausting’.  “This has been a hard fight and it’s taken a long time”, said Jennifer.  “I just want to say thank you, thank you to everyone – the support is what’s kept us going.  We still have to give Mike up and give him to other people, but at least we know we’re giving him to the right place for his future.”

That the Calverts have felt they needed to mobilise tens of thousands of supporters, simply in order for humane common-sense to prevail, is abominable.  It should be an obvious given that the wishes of people with disabilities and their needs come before marginal financial savings.  For the sake of families in situations similar to the Calverts’, the LBBill needs to become law as soon as possible, so that people with disabilities no longer have a fight on their hands in order to get the living arrangements that they (and their families) want and need.

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