Men at work: Day 105

LB went to the farm yesterday for the first time in weeks. He’s timetabled to go every Monday and Friday but has consistently refused. Even though he always enjoys it when he’s there and works hard.

Apparently he’s been interested in the decorators, carpet fitters and electricians who’ve been working at the unit for the last few weeks. Yesterday it was turn of the gardeners.

“You hear that sound LB?”, asked his support worker.
“Yes,” said LB.
“What is it?”
“Lawnmower.”
“No, it’s the sound of men at work.”

And that was it. Bowl of porridge (or two) and off to work. Beautifully done.

 

‘Am I mainstream now Mum?’

We passed the 100 day mark this week. 100 days. 100 days of incarceration (though not according to some involved in this story who insist the locked door isn’t stopping LB leaving the unit). Let’s park that detail for now. And the emotions associated with this experience.

Leaving sounds are being made. Most vocally by LB. The slow wheels of social care are groaning into a ‘lets talk about potential provision at some vague meeting at some unspecified point in the near-ish future’ position’. I suspect (sadly) this may be quite something in social care activity terms in the case of young dudes like LB.

Incarceration came about because there was no care or support available. This (incarceration) has given us – er, I’m making some unsubstantiated assumptions here that Goffman would possibly be proud of – a slightly better position in terms of access to support. I’m less than optimistic about what that support might look like, given anecdotal and other information, but the bar is set so low from where we are, support of any shape that actually supports, is progress.

Reading between the lines (because nothing is transparent here) unnamed people (in health/social care/education?) are aware that LB is ready and in need of support to enable him to be released from the (I’m assuming) costly provision he’s been an inmate of for the last 100 or so days. Not that he’s locked up or anything.

Now there’s the rub. For the first time, we’re insisting on effective and appropriate support. This position makes me feel slightly heady, slightly hysterical, hugely enraged but mainly sad.

But hey. What about LB? How’s he doing?

Three things jump out this week.

1. He attended the ‘feelings’ group which was progress after the first meeting when he turned up, gave everyone the finger and left.

2. He’s asked me repeatedly this week if he’s mainstream now.

3. When I ring and they pass the phone to him, he has a nifty exchange with me – ‘Yeah, right’ ‘Yeah, cool, see you then.’ ‘Right, yes, cool, yeah’.

I’d take these three things as a sign that there is some shaking down in his mind of who he is, and what he wants.

C’mon social care (if you hold the power here). Let’s act on that and create him a space in which to live productively. And, while I’m at it, can I chuck back into the mix the feelings of siblings who are offered no support, and, if under 16, not allowed to visit their brother or sister on site?

It shouldn’t be like this.

Squashing, starving and filling the dishwasher

LB wants to come home. And we haven’t got support yet to have him home. The care manager is looking into options. The unit have pretty much reached the end of the road in terms of helping him. They’re upping his activity level, encouraging him to empty the dishwasher and creating some social stories.

An email from the care manager last week states;  “There is a meeting currently being arranged I understand it’s the 8 July but no time has been set yet to discuss in more detail this option [support].”

Eh?  Seriously? July 8th? No time set?

Just in case anyone has forgotten, this is an 18 year old young dude. How long is it going to take to put some sort of appropriate support in place? To enable him to come home? What value is being attached to his life? [Well I’d guess crap all to the last question].

At the weekend, LB succumbed to bear hugs from both Rosie and Owen and, just as uncharacteristically, said ‘I miss you so much’.

Heartbreaking.

Today when I visited, his room had been painted. All the posters, photos, drawings and detritus built up over the last few months, were removed and piled up on a cupboard. He was kneeling on the floor. Flicking through a truck magazine on his bed. Surrounded by white walls and nothingness. Even his unwanted, unsought after ‘space from home’, was open to destruction. Timetabled to fit with some tendered/purchase ordered, person discounted process. He wasn’t happy.

It’s as if any semblance of family life, of anything and everything we’ve tried to create and achieve (including filling the dishwasher) is at the mercy of some peculiar and arbitrary non-space between health and social care, between learning disability and mental health. A space created through the provision of no effective support/care and mediated through a bizarre emphasis on  ‘choice’, thoughtlessness and the vagaries of what’s called “service provision” despite not really offering a ‘service’.

In one of those funny twists of fate? coincidence? general shite? I got an email reminder today about a new university wide autism interest group. The first meeting is on Thursday afternoon. On the distribution list was Dr X (who I’ve now re-named Doc Dire). The one who suggested we did the hunter gatherer diet and holding therapy all those years ago. There is no evidence to support the former (still) and there are, according to Autism Research, “numerous personal accounts of the damage caused to people with autism and other conditions” in relation to holding therapy. So, the advice from the experts* from yesteryear was to starve LB and squash him. And now he’s waiting in limbo, for some faceless people to “set a time” to discuss future support “in detail”.

Marks out of 10 for health and social care provision over the years?

Let’s not go there.

*The other advice from Doc Dire was to avoid support groups because they were just filled with a bunch of moaning women. Hilarious.

Choice, cake and a chat group

ryan5-306A couple of weeks ago, a support group for unit patients was set up. LB received an invitation to attend this group which was to be held on the Friday afternoon in the living room. That evening when I visited, I asked the staff member how the group had gone. Bit of a disaster, it turned out; everyone chose not to attend.

The choice agenda in practice. Kind of hilarious.

The following week, the group ran again, this time with the addition of cake. LB turned up, ate cake and chatted. A lot apparently. Of both.

The group is now called the Cake and Chat group. Well, for LB anyway. I’m not a big jargon person (I hope), but I think this is probably a rocking example of person-centred thinking.

 

 

The logic of care

As luck would have it, I’ve been reading Annemarie Mol’s ‘The Logic of Care’. Just in time for the response to my NHS complaint about the events leading up to LB’s admittance to the unit to plink through the letter box.

These events are recounted on this blog in some detail but can be summarised as, er, a complete lack of care. Mol argues that the current emphasis in health (and social care) on choice is inadequate. This, too, is timely. Choice schmoice if you ask me. She’s concerned that an emphasis on choice leads to things becoming fixed and constrained; the circumstances in which we make our choices, the alternatives we choose from and so on. And choice is tied to individual responsibility. Instead we should pay attention to the actions of care. We should be doing things. Collective practices and attempts to make life more liveable.

Well I’m liking Mol’s interpretation largely. So, what about the response to our complaint? It has been investigated. Key people have been interviewed. The initial findings were further challenged and we have a detailed and considered letter. I don’t want to go into the details of this here as there are some outstanding issues, but I do want to draw attention to a phrase that is explicit and implicit throughout the letter; ‘the clinical care and support was satisfactory and of the standard of care that would be expected from the service’.

Now in Mol’s research, when people complained about their healthcare, they were not stories relating to a lack of choice, but experiences of neglect, of feeling abandoned. That nobody cared. Our experience of the period leading up to LB’s admittance to the unit was that health and social care didn’t care. The two professionals I howled down the phone to that Friday afternoon, after LB had punched his teacher in the face, didn’t care. But they weren’t the only non-carers. There was a structural and systemic lack of care across the health and social care board.

But we apparently experienced the ‘standard of care expected from the service’. Whose expected standard of care is the glaring question here? Based on what criteria? What we experienced was nothing that could be remotely daubed as “care”. And, as always, I’m left with my litmus test of wanting to ask the people involved during that period; ‘Can you just, for a moment, imagine if this was your child? Experiencing this level of “care”? What do you think you would feel?’

So, we’re left with a misplaced (or mis-used) choice agenda and a system in which the expected standard of care equals no care. Luckily for us, there was a supporting cast of dazzling carers; family, friends, Charlie’s Angels, head teacher, school nurse, cake-makers, neighbours, twitter buds, colleagues, and random strangers. That’s what care looks like. Collective attempts to make lives more liveable.

Losing count – around Day 90

At the moment I feel a bit beaten with knowledge of awful practice/terrible processes in the broader ‘learning disability’ world and the implications of these for people (in social, economic and health terms). Aside from research evidence, I know a lot of young (and older people) whose lives are, at best, less than adequately supported or enabled. A Facebook transition parents forum (I largely lurk on, sorry) consistently details examples of poor support, battles and misery. For example, from three days ago;

Nothing gets easier. R is suposed to be leaving school officially end of June but we have no agreed care in place (not my fault). One of the day care places (2 days a week) is having major alterations and have said they cant take him until 15 august and the other day care choice (2 days a week) doesn’t start until 31 July, so I am going to be left looking after R once he has left school on 18 July. Whilst trying to work and also caring for my mum. Jolly hockey sticks!!! They all know R is leaving school,have known for years so why people cant get their bloomin acts together and sort it for him I don’t know. Plus I have to find some part time employees to help with the other day a week and transport to and from respite etc and the bloomin paperwork. I am positively frazzled. And if I hear the words you are no longer responsible for him any more I am going to spit!!!!!

I know I keep saying this, but support is shite or non-existent. Aspiration is a dirty word. Jargon laden processes work to effectively crush young people and parents’ hopes and expectations over time until the most basic/cheap and soul destroying ‘life outcome’ – unproblematic weekly burgers and extensive television viewing [by unproblematic I mean without upheaval or disruption in care provision/budgets] – become the default (or even sought after) position. The independently supported no-life. I’m calling it a life outcome rather than lifestyle because the latter implies some choice. And really, this isn’t about choice. An outcome of the burger/tv existence is, of course (these things ain’t rocket science), the health inequalities detailed in Emerson’s depressing read (and countless other reports).

We took LB for an Indian buffet again today. He was cheerful, very chatty (well largely to himself and, unfortunately, with the waiter*) and ate numerous plates of nosh. He bounced down the Cowley Road after to Honest Stationery and Tesco for some shopping. His good mood disappeared the split second he realised it was time to go back at the unit. (Though he managed not to punch himself in the face today).

He wants to come home. We want him to come home. But now we’ve had a break from the pre-unit experience of cobbling together after school cover – through daily shuffling of commitments and working late into the evening (and trying to ineffectually defuse anxiety) – we want effective support in place first. Not a big ask? Nope, you’d think not.

But what has also emerged loud and clear through the knowledge we’ve gleaned from various sources (most importantly experiential sources) is that not only is there a paucity of support options forget aspirations, silly, but once any form of ‘support’ is in place, possible alternatives disappear. One friend spent six years trying to move her daughter from an inappropriate supported living space, nearer to home.

I’m beginning to feel more human today after several disturbed nights this week. The Care Plan Approach meeting left me with a fear that LB would be dispatched to any available ‘room’ in any craphole provision by the social care/health machine. That he would “choose” to move to [fill in the location here] to live with his peers, eat burgers and watch tv. For the rest of his shortened through an unhealthily lived life. This fear, in some ways, works to make a ‘local’ version of this no-life infinitely more appealing.

I’m beginning to think that our experiences of learning to live with a vibrantly different child (in good and sometimes not so good ways), that originally sparked the writing of this blog, have been transformed by the sledgehammer experience of “transition”. The equivalent of some kind of crap horror/slasher low budget film that you can’t wait to switch off. If you have the choice.

*Unfortunately given his new 1970’s type sit’com’ type Indian accent in asking for his coke.

The walk and the talk

Yesterday I got home about 7pm. I rang the unit to ask if LB wanted me to visit that evening or today. I don’t feel I have to see him every day, but I like him to know that we’re around.

The staff passed LB the phone and I asked him the question.

Today“, he said, straightaway.
Are you sure?” I asked,one eye on a bottle of wine chilling in the fridge.
Today, Mum, today“, was the firm answer.

When I turned up at the unit, the staff were surprised to see me. He’d given the phone back to them and said I wasn’t coming. Funny. Or is it?

The unit team have produced a communication care plan for LB which is stuck on his bedroom wall. The first objective is;

  • The family need to phone if they want to come. If LB doesn’t want them to come, staff to suggest to try again on a different day.

Mmmm.

The Department of Health only days ago published a joint statement with various partners about post-Winterbourne care for learning disabled people, which included a recognition of the learning disabled people in other NHS-funded hospital care. A commitment was made in the Winterbourne View concordat “to ensure that by 1 June they will all have had their care reviewed and a personal care plan developed, built around their particular needs, taking into account the views of their family carers”. [italics added]

Now, these things (as usual) ain’t rocket science, but I would have thought LB’s communication care plan could have started with any one of a billion objectives that would support and facilitate his communication with others. Starting with this one is kind of problematic to me, as it sets us up as a problem, or an obstruction to LB’s development. An issue that emerged in the very early unit days.  Given that only a few months ago, LB was a typical teenager, living with his family, I’m not sure what sense he makes of it, which may be why he told the staff I wasn’t coming, having told me I should. The communication plan is on fire, clearly.

But then, as with most of these things, there is a helluva lot of talking the talk, but little walking the walk. It doesn’t matter what grand statements are made at the top, if they ain’t going to translate into practice. And the irony is, I/we/carers are forced to become ‘problematic’ to try to get some walking done.

Choice anyone?

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The Unit. Day 78

I was away for five days last week. It seemed kind of good timing as LB was a lot more like his old self. I was at the Nordic Network of Disability Research (NNDR) conference in Finland where several papers were about choice, autonomy and learning disabled people.

Rich took my mum and Owen to see LB while I was away. He was fairly disengaged and not doing much. Going to see him yesterday evening, after this break, was pretty disheartening. It made me want to toss the whole choice/autonomy agenda in the nearest skip.

His anxiety levels/aggression and hostility have seemingly reduced. Fab.  At the same time, he basically spends every day watching DVDs. Unless there is the option of a trump card outing, a ‘b’ card; burger or bus museum. This is in contrast to his school timetable a few months ago.

We’ve consistently said/thought/believed/argued that LB, and dudes like him, should lead a productive life. [I’m seriously boring myself now saying this over and over again with no sniff of a productive life anywhere in sight round this way, but I refuse to give it up]. Outside of some small and hugely oversubscribed/or hidden away pockets of brilliance, there ain’t much substantive choice for young learning disabled people. Especially with current cuts and welfare reform.

Call me a crappily cynical old baglet (yep, please do, because I’d love to be proved wrong), but it strikes me that the ‘choice/autonomy’ agenda is a bit of a cheap and effective tool really. It doesn’t cost much to ‘choose’ to watch DVDs all day, with an occasional ‘b’ outing. The long term implications (outside of cost – health, social, emotional and political) of people leading lives like this are too enormous to even begin to wince at.

One of the presentations at NNDR (twitter feed #nndr2013), was by Alan Roulstone who talked about choice, autonomy, community and  risk. One of his conclusions was the importance of engaging with a “realism that never lets go of ambition” and “ambition that never lets go of realism”.  He was weighing up risk and vulnerability in terms of hate/mate/(and general neglect) crime, but I wonder if his focus on ambition is a bit ambitious in reality [sorry]. Ambition, for learning disabled people, is a bit of a stretch. And way too pricey.

There is a new realism for LB though. About doing very little with very little expected.

Choice and enthusiasm

Beginning to find our way around this choice issue with LB at last. Or just picking up the techniques we used for years before ‘choices’ were relayed through and monitored by a third person.  Yesterday I rang the unit and asked if LB wanted to go out somewhere today. Yes. Good.

This morning, after much thought and discussion with Rich about where to take him (we don’t want to go too far down the route of endless treats and no sniff of dishwasher-land), we agreed the bus museum would be a good plan. A ‘bus museum plus’ plan. A pleasure and pain model.

I picked him up from the unit at 12.

“Where do you want to go then LB?”
“Bus museum.”
“Ok. We’ll go to the bus museum. And then we’ll go to Sainsbury’s after to do the shopping.”
“Sainsbury’s after?”
“Yep. Bus museum followed by Sainsbury’s shopping.” End of.

Nearly four hours of watching mechanics and enthusiasts in action, with a vintage bus ride thrown in. And then a packed Sainsbury’s at closing time. All done joyously.

Don’t you just love buses?

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The Unit. Day 67

Bit of a gap in posts for various reasons, none of which relate to LB. For once. Anyway, LB’s life is currently reflecting Candy Crush. Groundhog day at level 125. [Yes you Candy Crushers, suck it up.. it’s a therapeutic tool for me at the mo’ and getting to 125 has taken many, many night time/early morning hours. And I’m STUCK]. The choice offering is interfering in LB’s (non) school attendance. Decisions made in the weekly community team meeting about going to the farm to work are sunk by him being given the option to say ‘no’. So he’s been unit-bound since the buffet lunch last Sunday.

Not a big surprise really. Give any teenager the choice of school/work or doss off, most would choose the latter. But most teenagers aren’t offered that choice. And most would eventually realise that they have to do something productive. The adult space opening to LB is looking alarmingly like a version of day-centre-life.

I’m sure I’ve mentioned an article about an Oxford based learning disabled man’s (Rob?) long term experience of a day centre that was in a Sunday mag years ago. Rob? said if they finished their task of sorting screws (or whatever it was) before the end of the session (probably around 3pm), the staff tipped the trays out so they could start again.  The futility of this activity was piercing. The article could have been (I wasn’t as up to speed in those days) heralding the increase in self-advocacy groups and advent of direct payments as I think Rob? went on to be an early member of My Life My Choice. These developments were great but we all know (well those of us who look at reality rather than the rhetoric *cough cough*) that this shift has been largely superficial. There are the lucky few  who have fallen into an exceptional (but still cash strapped) social enterprise or individual setting. Most are unemployed, unfulfilling any potential they have. Eh, what’s that? Remploy? How many ex-Remploy employees have found new jobs? Naw, let’s not go there…*

I think introducing choice has erased discipline for young dudes like LB. The number of injunctions he took out against the dishwasher, as his allocated family task, was hilarious, but the job got done. School similarly have been easing sixth-formers into working environments, trying to help them understand that work is a part of life. But once you take that discipline away, you’re left with yawning space to fill. With DVDs, trips to the shops or fast food restaurants and hanging around.

That’s it for now, really. Unless anyone has any hints about cracking level 125 ?

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* http://www.guardian.co.uk/society/2012/nov/23/remploy-workers-new-jobs-labour