Tag Archives: personalisation

The Unit. Day 42

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The excitement of the trip to the bus museum had worn off by the time we visited yesterday evening. LB was in his room, subdued, having chosen not to go to the farm (again).

Choice eh? Very, very important that learning disabled people can make these choices, we’re told. Unlike many other people, who have no choices in their everyday lives. Yeah, it’s so much better that LB is able to choose to laze about in his bedroom all day (again), than get a good day’s exercise, sunshine, fresh air, hang out with different people and be productive. My arse.

Of course loads of people would choose the room-laze option over working. But they wouldn’t be given that choice on a daily basis. They’d have to (if they could) do something productive. And more than likely want to after a few days.

I’m getting pretty naffed off with this choice charade as you can probably tell.

Anyway. Back to yesterday evening.  LB’s bedroom was snug and comfy, with the evening sun shining in. He sat leafing through his Yellow Pages, with bus magazines spread across the floor. Jug of squash on the desk. It was calm and peaceful.

“Do you like it here, LB?” Asked Rich.

“Not really, no”, he replied, without looking up.

Throwing ‘money’ at a ‘problem’

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I’ll say it again.  I just don’t get the workings of the Mental Capacity Act in practice.  It just seems obfuscation* gone out for a night on the tequila to me. Out of necessity. I kind of understand the thinking behind direct payments (DP) though. Enabling/empowering people to buy in appropriate support/assistance (without having to rely on local authority provided support that can be constraining/limiting/inappropriate and sometimes patronising).

The early signs for me that DP were a bit flaky appeared at a series of meetings with some colleagues a year or so ago, in which an anecdote circulated involving a someone who chose to use his/her DP on Reiki sessions. This caused raised eyebrows. I didn’t understand why. If the Reiki made a difference to that person’s life, what was the problem? So what if there’s no evidence base to support the use of Reiki? It was probably more, or at least as, effective as a ‘turn in’ service involving a 10 minute visit from a carer at 6pm to get someone ready for bed. When they weren’t ready for bed.

Of course, some sharpish regular blog readers will be hopping up and down by now, hands up in the air to interject; BUT THAT’S WHAT LB’S DOING IN CHOOSING NOT TO GO TO THE FARM!!  Erm.. No. Not exactly. Let’s not drag LB’s choice-making into this particular discussion for now, eh?

So. DP. A good thing. In principle. If people are allowed (or able) to buy in the support/assistance/services they need. And there lies the problem.

We chose to have direct payments, I don’t know how far back. It was such tiny amounts at first, it covered a session at after school club each week for a couple of years. And then when LB turned 18, it increased to just about cover about 5 after school club sessions a week. At almost the same time, things deteriorated to the point that he could no longer go to after school club.

Cripes. What to do? Pay for an assistant to cover the time instead using DP? Yep. Way to go. This was our November time thinking. But the aggressive behaviour increased, inversely affecting the (small) pool of potential ‘assistants’/assistance we could draw on. On an almost weekly basis we crossed potential and actual past carers off a tiny list of possible support. This was sad in itself given some were young people who’d known LB since he was a pup.

The Christmas “CRISIS” and events of the weeks after left an empty list. At the same time, the Care Manager increased the amount of DP paid into the ghost account. Within an impressively quick turnaround.

Ironically, while the original intention, for us, to plump for direct payments, was to be able to organise everyday ‘ordinary’ support for LB (ie. support not drenched in learning logs, private care provider-ville, and agency crap), his ‘decline’ meant that all we could hope to arrange was the ‘official’ type care, and that takes time to put in place. One of several care providers I contacted during this period, eventually replied weeks after my original email to say;

  • This is potentially support we could provide. I do not have enough support staff to accommodate this currently, but we could recruit specifically for this purpose. Our hourly cost is £14.47/ hour. Would you like to discuss this further?

I replied to say that LB had actually been sectioned in the interim and she sent a reply about how advertising for the right person might take time and did I know when we would want the support to commence. No words. As usual.

This is where the problem lies. In Social Care Towers, it must have appeared that our particular case (one of many) was under control. A wedgey of money had been flung at it. In practice, Rich and I were cobbling together working at home, rearranging/cancelling meetings and making do. This is a privileged position which we both recognise. But not without costs and risks. And limits.

What I’ve learned is; throwing money, in the form of direct payments, at a ‘problem’, is not a solution. Money doesn’t equate to ‘support’. Money is only ‘money’ when there’s something it can be exchanged for. And really that something should be meaningful, effective and consistent. Direct payments shouldn’t equate to a ‘get out’/ ‘ignore’ clause for effective social care provision and attention.

*Gotta ‘fess up to googling the spelling of this.. it basically means (deliberately?) making understanding difficult.

 

Fairer Charging?

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In another twist you couldn’t make up, LB got a letter today from Oxfordshire County Council; he has to pay £63.45 a week towards his care, under the Fairer Charging Scheme. I called the guy who explained what it meant but I was too tired to take it in. We left it that LB would pay the backlog that had built up since November when he entered adult non services.

I mentioned it to Rich when he came in from work.

“What care???” he asked, baffled.

“Er. Good point. I dunno, I’ll ring him back and ask him.”

In an almost comedic conversation, cheerful chappy at the Council said that LB has to pay the County Council this contribution towards the cost of his care because he gets a direct payment of £151 per week. This is sitting in a bank account. The fact that we ain’t been able to buy any care is irrelevant. Can we use the direct payments to pay the contribution towards the non care? [I know, my brain nearly melted at this point]. No, that’s not allowed.

In effect LB will be paying the Council for the care we’ve provided.

Direct payments that aren’t used will eventually be reclaimed, and then LB can ask to have the money reimbursed. Now my brain is pretty foggy at the moment, but this whole process is beginning to whiff a little bit.

Update: Payment is being delayed while chappy speaks to the direct payments team about reclaiming the direct payments. This personalisation business is a lark. No care just aggravation.

Limits and horse-shite

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Well the light hearted, fun chit chat involving LB and his unusual take on the world, that partly inspired this blog, seems pretty distant now. I’m glad I captured some of it on these pages. It’s currently masked by reasonably regular extremes of behaviour that are unpredictable, aggressive and deeply upsetting. The trouble is, there isn’t any real (effective, valid, meaningful) support to deal with this.

I got a call at the beginning of a meeting in Manchester on Monday, after a Mother’s Day that included, in equal measure, horror and lovely, lovely love stuff. LB had had a serious meltdown? crisis? situation? at school. It sounded awful and his teachers and the school nurse were understandably shocked and upset by it. I could only say, standing in the corridor, trying not to cry with the futility of the situation, ‘I don’t know what to do’.

Cripes. Well who does know? Who should know?

Er, health professionals? Highly trained specialists who have the relevant knowledge to help LB and guide us through this.

No. Not really.

Trouble is, they won’t say that.There is a faux professionalism that involves sticking to a script that is irrelevant. Without that script there is nothing. LB’s unusual behaviour challenges, tests or confounds the boundaries of their knowledge. And this, in turn, is complicated by the resources available. This is not a comfortable situation for anyone, so we go through the motions in a performative way. Questions asked. Answers given. And they (pick your health professional) ease out of our home. No further forward. No change.

Tomorrow it’s the turn of the (learning disability service) psychologist, who was passed the baton by the (learning disability service) psychiatrist (who did nothing). Our GP embraced her contribution this afternoon in an obviously appalling situation.  I promised to be open-minded when I meet her.

“Can you prescribe something like a horse tranquilliser as well, maybe with a dart gun, for those particularly tricky moments?” I asked. “No,” he coughed, “this can’t be resolved through medication. LB needs help to learn strategies to manage his behaviour, aggression and anxiety. That is the role of the psychologist.”

“Ah, okeydokes,” I said, leaving his office, with my promise taking a hammering.

Choice and autonomy my arse

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At the moment our lives are becoming increasingly [hahahaha] complicated as LB has become very anxious and distressed. We’re in a big old hot pot, dealing with support and services underpinned [big fanfare] by the gov’s personalisation agenda. Key principles; Choice and autonomy.

Well this sounds like the baby. Choice and autonomy.. lovely, lovely, lovely. Let’s have a little looky at how this is shaping up eight weeks on;

Social Services. After a complete meltdown that resulted in LB out of school for a couple of weeks, the Care Manager acted instantly to organise a wedge of emergency direct payments for us to buy care. Good. We can choose what type of emergency support we want. Unfortunately, the kind of people who may be willing and able to hang out with a 6ft tall, young man who may, or may not become aggressive, are not that much in supply (and hugely in demand). So in practice, not so good. The alternative is the Respite Centre with the snooker table. Complete fail. CM also offered to organise a round table meeting. Good. And, after a particularly alarming incident (Episode A), has given me an emergency number to call. Good. Unfortunately, if we call that number we are opening a window for LB to potentially be sectioned. ‘Mmm. Well I’m sure they will do what’s best for him in that situation‘…I hear you think. Not really. ‘What’s best for him’ relies on what’s best for him being available. Not a mental health unit over a hundred miles away in Norwich where two of his class mates have spent months. There is no in-county support for young learning disabled people. That is a complete fail.

Health. The GP instantly prescribed anti-depressants over the phone without hesistation. Good (in the sense he took our concerns seriously, not that LB is now on more medication). After LB mumbled something about suicide near some professional type person, he was whizzled into a same day appointment with a psychiatrist. Good. (Well a bit weird that the concerns we have are largely ignored but one word gets instant attention). The psychiatrist asking LB if he felt suicidal was a complete fail. Never, ever put ideas into that boy’s head like that. She then, after a telephone appointment 6 weeks later, discharged him. Not so good. ‘Why are you discharging him?????’ I asked, seconds after I’d told her about Episode A. ‘He was referred to me because of the concern about suicide, now that is no longer a concern, the psychologist will help him to manage his anxiety.’ Not so good [and given our experience with psychologists over the years (star charts anyone?) suspect this detour will be a complete fail].

So what are we left with? Money to pay for care. No care to buy. And no one doing anything to help LB become less anxious.

Choice and autonomy? Feels a teeny bit flaky to me. Can we have some action?

A building with a snooker table

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LB’s been off school a week now. Unmanageable distress associated with school, which manifests itself in violent outburst (towards himself and others), has led to a kind of informal home arrest. Home where he is largely a chill pill. Home which ain’t ideal when we both have full time jobs.

School are going to try to sort out some way of him returning part time. The plan was for him to stay at school until July 2014. A ‘mental health’ referral has been made with no one involved optimistic that this will happen within 4-6 weeks.  The care manager (who had discharged him after success at panel finger nail blackboard towards the end of last year) called today to sort out some sort of interim ‘care’ for him.

“Well he can go to respite pretty much straightaway…”
“What do you mean by respite?”
“He can go to Saxon Way. Into respite. I can get the manager to call you.”
“Sorry, I don’t understand. What is it exactly?”
“Well it’s a building.”
“Eh?”
“It’s a building with a snooker table and other stuff to do. He can stay there or maybe the staff will take him out into the community. Or if you prefer, some staff can come to your home and look after LB there. The advantage is, it’s pretty much an instant solution.”

So, after apparently huge shifts in the organisation of social care in the UK, the development of aspirational thinking around person centred care, and having spent 16 years in education, LB is consigned to a building with a snooker table. At the first hurdle.

I don’t get it. What about his future? His life? His capacity to be meaningfully productive in some way? He’s 18 years old and should be looking forward to the start of his adult life, some type of employment and everything that comes with that. Not written off and stuck in a day centre waiting for a half arsed referral to fictional mental health support. Seriously?

I must be missing something.

Surely.

‘That letter’ and non-standard mothering

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So here’s the gig. LB is 18. Increasingly unhappy at school. Deteriorating in emotional well-being. The space for him to be happy seems to be steadily narrowing. Like those rooms on Tomb Raider with moving walls, or the ledge Batman stands on.

We work full time. Luckily with flexible employees/jobs that allow Rich to leave work at 1pm to collect LB from a residential school trip in Devon when it goes tits up, or one of us to be home at 3.15pm most of the week, with some help from family. This also means that we spend quite a lot of the weekend working.

We have a care manager. Or we did, briefly, until she organised the 2 hours of direct payments five days a week to cover after school ‘adult child care’ and discharged us indefinitely. ‘Successful at panel*’, she called it. Trouble is, ‘adult child care’ ain’t readily available. And two hours after school doesn’t solve the increasing problem LB has coping with school.

Things are not going well.

I met with a good friend this week who has a 25 year old daughter in a residential setting. She always amuses me with her refreshing, no nonsense, cut through bullshit, type approach to her and her daughter’s social care experiences (which have been up and down). This time she turned her focus onto LB. It was time to write ‘that letter’, she said, as we noshed on the early evening menu and glugged house white.

If we didn’t write ‘that letter’ to social services, saying we wanted LB to live independently when he finished school in summer 2014, he would get lost from the system. We needed to have ‘that letter’ on file. So it’s recorded. We didn’t want to be scrabbling around in crisis, in five years time, desperately trying to engage with social services and no space to be given any choice in his living arrangements.

This week I’m a respondent at a workshop on ‘Changing Models of Motherhood’. The session is about ‘non standard mothering’. I’m uncomfortable with that term for all sorts of reasons. I want to call it ‘different’, ‘hindered’, ‘frustrated’, ‘hampered’, ‘unsupported’ mothering. ‘Non standard’ implies a benign, though less valued, type mothering but one that is somehow still within the gift of the mother/child relationship.

LB’s current distress relates to external factors and is compounded (or created) by a lack of appropriate, timely, responsive rather than reactive support. I don’t want to write ‘that letter’. For me, it goes against what I consider to be ‘good mothering’, non standard or whatever. It seems harsh, punishing, unfair and I worry it will expel him to some, as yet unknown, space. A kind of containment.  Experiences of social care so far have been pretty mediocre to downright crap. For example, the council funded sessions of peer buddying to take LB out and about, and the care agency sent a man in his fifties because there were no other staff available. I know that the rhetoric around choice and personalisation is hollow. There ain’t a meaningful choice.

So, writing ‘that letter’ fills me with dread. I know its got to be done. But I still don’t know why it does. It shouldn’t be this crap.

*And I still don’t know what ‘panel’ is.

Transition (a steady descent)?

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Here’s a photo I love of LB  at his last but one residential school trip in Devon. The one before last week when he had to be collected at a halfway point on the motorway, half way through the week. Because he was distressed, anxious and lashing out at a staff member.

OLYMPUS DIGITAL CAMERA

I’m not sure if I’m posting this photo to hold onto his obvious enjoyment/happiness during the trip, facilitated by school staff who consistently push the boundaries with the kids, or whether I’m posting it as a record of transition (which I’m increasingly interpreting as a steady descent) into ‘adult services’. It’s probably a mangled combination of both.

I don’t understand how we allow (stop? prevent?) this descent. This change from a reasonably happy dude to someone who finds themselves at odds with life. The circumstances around LB’s current anxieties are, at the same time, specific, random and seemingly  ‘irrational’. So difficult to understand and make sense of.

Lashing out at people, and demonstrating intense upset is hugely upsetting for everyone involved. It’s happened sporadically (but memorably) in the past, but it’s uncharacteristic for LB to be so consistently unhappy. He’s pretty much had a much loved role in our family. He’s happily bypassed years of bickering, fights, wanting to win, score, or just be heard. He’s always occupied his own space, peppered with youtube and Eddie Stobart (and, thankfully in the past, Keane). For the last couple of months, he’s been unreachable, different, anxious, unpredictable and unhappy. And fucking irritating.

I was kind of pleased the GP today resisted referring LB to mental health services. He said it was medicalising a problem that wasn’t medical. I agree with that. And appreciate his refreshing approach.

But how do we stop the descent. How we get the happy surfer dude back? And who will help. It shouldn’t be like this.

Doreen and Sam

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I met up with Doreen this morning on the bus to work this morning. Doreen worked for social services for 20 years as an escort and took LB to school for about 2 years five or six years ago. We loved Doreen.  She was sitting with Sam who was on his way to work in the café at Oxford Brookes. It turns out Sam used to go to LB’s school so we did a lot of catching up with different kids from the past.

D: Oh yes, we used to pick up Ben T at Radley Way and then go on to Rose Hill for Sarah H, she was a funny one and then back to Barton for Tom L. Then there was James C…
S: James C? Awww… you’re kidding me! I know James C from Anjali Dance Group.
D: Yeah, James C and then Donna T, do you remember? She was at Saxon House for a while.
S: Donna T? Yes. Oh you’re kidding me!  [hehehe]
D: And then there was Terry W…
S: Terry W? You’re kidding me!  Oh you’re kidding me right! I know Terry W from Mencap.
D: Terry W yes. I saw him recently in town. He came over and gave me a great big bear hug, as he does. But the person he was with told him off for talking to strangers. He said to her ‘That ain’t no stranger. That’s Doreen’.  I don’t know.  I see ‘em now and they’re all so grown up, but I still got photos of a lot of a lot of ‘em.  Anyway, I’m getting off here. Nice to see you both.
[…]
S: Do you know Joan M?
Me: Yep, I know Joan M. Do you know Danny F?
S: Danny F? You’re kidding me! I know Danny from Mencap.  Mencap.  Terry W. was in town. Why did the carer do that? They were wrong. Terry knew the lady sitting here. He knew her and they were wrong to say ‘don’t talk to strangers’. She wasn’t a stranger. Fucking outrageous. They were wrong. Do you know Daisy?

Beyond shunned, trust and what?

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LB’s now been back from his five day PGL adventure for three days. And all we know is that he was ‘shunned’ by the boy he shared a room with, he went abseiling and ate chips. He says he had a good time. He says his room mate scared him. He says he had to sleep with the light off, which also scares him. He says he doesn’t want to go again. But then he didn’t want to go in the first place.

Oh, and I also know there was a ‘staff change’ on the Saturday in the middle of the trip.

This was LB’s first ‘adult’ holiday. It was organised by a care provider company who seem to have a good reputation. As I wrote earlier, there was no choice involved. We haven’t been shown any evidence of the ‘quality’ of this company (or any other company for that matter). The local authority obviously use this company but that don’t mean diddly squat. The company has glossy brochures. A bouncy, cheerful worker does home visits and gets the forms signed. A cheerful woman picked him up and dropped him off. There is a cracking performance of bright, breezy and cheerful. But what do we really know? There’s that screaming question; Why should we trust you?

Maybe I’m being overly protective. Maybe LB went off, had a great time and loved every minute. I hope so, but that’s not the point. It just ain’t good enough. I know, historically, learning disabled people have had a crap deal, but the current context of Winterbourne, the crapheap that is the CQC, the increase in hate crime against disabled people, and so on, is hugely concerning. LB, like many other dudes like him, is vulnerable. He doesn’t have a malicious bone in his body, is loyal, loving and great company. But he doesn’t have any resources to defend himself.

I don’t like this discourse of ‘care providers’ when profit is often be the motivating factor in their operation. What ‘care’ are they providing? Are they ‘caring’ or is it more about containment? I have no personal issue with the particular company that was involved in this holiday. I have a broader issue with the way in which LB has already taken his first step into adult (almost) services and already the foundation of lack of information, choice and control is laid.

Oh, and a ‘staff change’ during a five day holiday with a group of young people like LB, in my book, is a complete fucking no no.