Mr Sad from Sadfordshire

Such a sad time at the moment.

Steven got banned from Virgin Active yesterday. he started to have a meltdown just as they arrived and hit out at one of his friends. I wrote recently that a couple of the women from the water aerobics group had started a petition to have Steven removed because of the noise he makes in the cold shower. I guess that Steven unfortunately, gave the manager the ammunition he needed to instigate a ban.

This post isn’t a criticism of the club – the manager has made a decision and that’s that. He may have made the right decision – he may have been a bit more tolerant and negotiated a trial period. I don’t know. Even one of my closest friends text me last night to say: “I’m with the gym on this one”. So, who knows? It’s done now.

My sadness is that it brings about another loss for Steven. When we run through his timetable for Tuesdays and Thursdays, he reels off a list of his friends that he is looking forward to seeing there. In particular, he is very close to T, the guy he caught yesterday. Despite a 50 year age difference, Steven has built a phenomenal relationship with T in the five years he has been going to the pool. Every year, T buys him a Christmas present and back in 2010, without asking, T wrote a testimonial of Steven for the court case. We spoke on the phone this morning and he was really upset by the ban and asked me if he could still pop over to see Steven at Christmas. Writing that brings a huge lump to my throat.

But for all his other friendships at the club – they’re finished. And that has been the pattern for most of Steven’s life. Neighbours move away; support workers leave abruptly – it’s that awful situation that we all experience in life where someone is more important to us than we are to them. As the day has wore on, two of Steven’s other friends called me to express their dismay over the ban. One told me something very interesting that I’m sure fed into the manager’s decision. He said: “We were talking and obviously Steven is getting more difficult if he needs three workers with him”. We’ve had an extra worker this week because it’s a new guy on induction for two weeks. But an assumption was made, and a helpful assumption in justifying the position.

There’s also a terrible ache about the massive difficulty for Steven to take his place in the community. Last week, I wrote that a learning disabled person doesn’t enter the community from the outside – they are the community. But it’s hard to be part of the community, if some members of that community are hostile to you and don’t want you there. I’m sure the women from the water aerobics group’s lives are much cosier now they don’t have to experience Steven shouting when he gets under the iced water bucket. From a cold shower to a cold shoulder in 24 hours. It all leaves the unanswerable question for me – how does Steven carve out a place for himself in the world? Do we take the Hillingdon line and lock him away for fear of what he might do? If not, how does he find his place?

I got the ban letter from Virgin Active when I got home tonight. Steven has breached their club rule that applies to getting drunk and starting a fight. Don’t really know what to say to that.

Tonight, the Mencap pool reopens. It is the safest place in the world but it doesn’t count in the context of this post. Sometimes it can be chaotic there but there’s always a tolerance there. And a humanity. And nobody judges. But that’s a very tiny oasis for two hours, twice a week – the rest of the week is a tightrope of tension as we navigate the “normal” world.

When I spoke to the manager at the club yesterday, I found myself telling him how Steven’s anxiety about the move/non move has been increasing. In the last week, the anxiety has started to seep out from the night times into the daytime. Steven is needing extra reassurance before he goes out of the house that he’s coming back home and not going to be carted off to the unit. I stopped myself short though – he wasn’t interested. And perhaps the manager and my friend are right. Perhaps one man’s anxiety is irrelevant in the greater scheme of a swimming pool community living an undisturbed life. In disability law, we have “reasonable adjustments” but as events at the club have shown. some adjustments are too unreasonable for some. It won’t ever change, so that’s why that sort of pain, that sadness, that loss will always be present in our life.

I was going to end there but on the way home from work I nipped into the cafe for a coffee. At a nearby table was a disabled woman in a wheelchair and her carer. The disabled woman was eating a poached egg on toast in a rather haphazard manner. Two women on the table, kept tutting and rolling their eyes and eventually called the waitress over and asked her to move the woman and her carer. The carer was brilliant and pointed out that if they were unsettled, perhaps they should move. That only served to outrage them ever further and then my bus came, so I don’t know the outcome. But it struck me as familiar.

How do we live together?

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Ask The Family

I remember Ask the Family from the 70s. Robert Robinson with his splendid comb over. Kevin wasn’t Kevin – he was Master Wilkinson. Audrey wasn’t Audrey – she was Mrs Wilkinson. Except when Robert Robinson was feeling a bit cheeky and then she might be called Mother Wilkinson. Even back in 1972, it all felt very quaint – a peculiar nod to a bygone era.

Christ – if only we had Robert Robinson today working in the adult social care field. In 2013, you don’t get quasi respect – you get totally ignored.

I’ve been trying to write a chapter on “Families” for the Carespeak book. Four days later, I’m still staring at a blank piece of paper. I want to try and put some historical perspective on it – has it always been the case that families of adult learning disabled people are invisible? If not, when did it change?

And I don’t understand the rationale behind the policy (because a policy is what it feels like – it surely isn’t natural to be so dismissive of people with a wealth of experience and knowledge).

I get confused by the very mixed messages. On the one hand, we hear daily of how the mental capacity act is abused in order for the powers to get their own way. Mental capacity assessments and best interests are manipulated to suit a particular agenda. Yet on the other hand, we are given all this stuff about independence and choice and that now the person is an adult, they should be exercising their independence and choice. But time and again, we learn that the independence and choice agenda is an illusion – a smokescreen for efficiency savings and other murky agendas.

Perhaps families have to be sidelined. The illusion couldn’t sustain itself if Families were welcomed into the picture. Things will start to get a bit real at that point. The person’s history has to be erased because you can’t create an illusion with a whole 18 years plus of history to factor in.

All that still doesn’t really explain for me, the downright hostility to families at times. Those of you who follow Sara Ryan’s blog will recall LB’s communication plan and how the number one point of the plan excluded the family. Why? What on earth does that hope to achieve? I’ve mentioned before that whilst Steven was at the unit, I was absent from his “patient passport” – his keyworker was listed as his next of kin. Besides being totally wrong (I am still alive) – it was hugely disrespectful. And liable to send Steven into a massive panic about what had happened to his Dad.

It’s all cobblers anyway. The adult social care world would be up shit creek if families stopped doing what they do. I’ve been learning about “deflators” recently. I’m not exactly sure what they are but it seems that many LAs, when working out an individual’s personal budget are looking at the amount of care provided by the family and “deflating” the care plan and budget in accordance with this input. Apparently, this is unlawful but it is now very commonplace. There is a sick irony there too – whilst “deflation” is taking place, the whole adult social care industry continues to massively inflate. The industry goes into inflation, whilst the people they are meant to serve, are subjected to deflation.

I might just have three blank pages in the book under the title of “Families”. That would be the truest picture of how the adult social care world views families.

Deprivation of Sleep Safeguards

Sleep is a bit thin on the ground in the Uxbridge house at the moment.

Steven is still pretty distressed about the move/non move and it always comes out at night time (usually about 1 in the morning). The meltdown can last from between half and hour to three hours, and even if I wanted to, it would be impossible to sleep whilst he’s in meltdown.

But I have safeguards in place – or so I thought.

On Sundays and Wednesdays, the support agency is contracted to supply a worker from 6am. This is to enable me to go back to bed after letting them in and to try and catch up on some much needed sleep. There is never a problem with Wednesday as the support worker stays on and does a full shift through to the afternoon. Sunday is different – we only need someone from 6 to 9. Until June 2012, it was never a problem – we had a regular worker who lived locally and he never missed a shift. Unfortunately he had to leave last summer and it has been a nightmare since getting someone to work the shorter shift.

In some respects I don’t blame the support workers. Who would want to travel across London for a three hour shift and get paid about £25? I am cross with the agency though. Today has been the second Sunday running where nobody has turned up and I’ve received the usual apologies from the agency. I want actions to speak louder than words.

The agency makes a 100% profit on every hour they provide support. For the two nightshifts a month, they make just under a 200% profit. I’m not sure of the exact figures but knowing the amount of hours they are contracted to do, they are raking in the money for themselves.

Perhaps they could pay the workers extra for working Sundays. Perhaps they could help the workers out with travel. Perhaps they could take the service they are meant to be providing seriously and not think that a weak apology lets them off the hook.

I’m left with the thought that I’ve got to wait another seven days before I can try and catch up on some sleep. I don’t expect any news on the housing front in the next week, so I’ll still have to deal with Steven’s anxiety, draining the tank even more.

I was meant to be going to stay with my friend last night but had to call it off as something came up that I couldn’t get out of. It is galling that if I’d have gone, I would have got my lay in. I also wonder what would have happened when the guy who would have done the night shift expected to leave at 6am but would have been stuck because his replacement hadn’t turned up.

Sometimes safeguards don’t work.

All Quiet On The Front at Weston

Nobody wants to talk to me…….

At the housing benefit tribunal on 9th August, the judge said that he would deliver his judgement by 16th (a week ago). I still haven’t heard anything. I phoned the tribunals service again today only to be told that the judge has been given a deadline of 9th September. I’m trying to stop myself reading too much into this. I can’t stop myself. Surely if he was going to dismiss the appeal on the grounds that Hillingdon submitted, he would have done that by now. That would have been the easiest, quickest option. I can’t stop hoping that he recognises the “exceptional circumstances” of the case and is having plenty of discussions in order to present a judgement that reflects that. And hopefully, expose Hillingdon’s duplicity again at the same time.

Talking of Hillingdon. It looks like we’re staying in the flat for the forseeable future. The housing manager has gone on holiday until September and the colleague he handed our case over to has also gone on holiday now. There’s nobody around. Again, I start to let my mind wander. Has this latest delay been orchestrated until after the tribunal delivers its judgement? Supposing the appeal is upheld – that would look pretty bad on Hillingdon, that they had made another wrong decision that has set off a whole series of events, culminating in Steven losing his home. Perhaps, suitable properties are still thin on the ground after eleven months. Perhaps it’s a damage limitation exercise on their part.

Leicester county council don’t want to speak to me either. Or rather they don’t seem to want to pay me for the DoLs conference I spoke at on 13th June. I’m still waiting for payment plus the reimbursement of expenses two and a half months later. Apparently, the council’s payments function is outsourced to a private company and the department who commissioned my services don’t have access to the company who makes the payments! I’m told the “system” shows paid but they cannot make direct enquiries as to what has happened to it. Checkmate. And no cheque mate. But that’s leaner, more efficient services for you.

I always thought that systems are there to serve people. In all of these things I couldn’t be more invisible or mute.

Flip Reverse It

One thing has bothered me since I wrote the piece for the BBC website about the language of the social care world. In the article, I quoted someone from within the field who told me once that the reason why phrases like “accessing the community” are used is because there is a lot of pressure on staff to present everything the learning disabled person does as having a value. This was borne out from several of the comments on the BBC Ouch page where many professionals from the social care world echoed this belief – they may not agree with the language but it is important to promote the value of a learning disabled person’s life.

This is total bollocks.

I’ve started to write the Carespeak book and a recurrent theme through every chapter is that it is important to consider that the complete opposite of what is being presented to you may be the actual reality. For example, if you are having “independence” bellowed at you, you may find yourself feeling more restricted than ever. One of my favourite therapy books is “The Shadow in The Helping Professions”. The book explores the hidden agenda that may be at play, which is always an important aspect to reflect on. One of my closest friends has a brilliant operating position that “there is always a part of ourselves that is up to no good”. Once we acknowledge that, it is fine. The book makes a similar point – be alert to the shadow being in force when something is being forced upon you.

This weekend, I was reading a blog by a woman with three children, one of whom has autism. In her son’s care plan, she was bemused by the statement that her son is “engaging with rebound therapy five times a week”. This was news to her! It took her a while to decipher the code but eventually she realised that it related to the trampoline she’d recently installed in the garden. Rebound therapy has value – playing on the trampoline doesn’t.

By reclassifying the family activity of trampolening into rebound therapy, a whole industry springs into action. Social workers, care plan coordinators, psychologists, behaviourists all suddenly have a purpose. And that for me, is where the value bit comes in – it boosts their purpose, justifies their salaries. Calling it rebound therapy doesn’t add any extra value to the service user but by heck, it makes the system feel like they’re offering something valuable. And therefore, by default, the people in the system become valuable. It’s a self-perpetuating, self important illusion. A very normal family activity that the young lad gets an awful lot out of has suddenly become a vehicle for the sustaining of a whole industry.

I had a problem with Steven’s old social worker back in 2009. She wanted Steven to attend citizenship classes instead of going to his water aerobics group. “What did you learn at the citizenship class today?” having much more value than “who did you chat to at the water aerobics group?” And I think it was problem that we,as a family, organised the water aerobics group for him – she could claim no part in this part of Steven’s life. He went to the citizenship class once – didn’t understand what he was doing there, got terribly anxious and had a meltdown and never went back again. Compare that to the pleasure Steven gets at water aerobics when he’s chatting away to his elderly friend Sid, as they bop away to In The Navy. Something with “value” may not be remotely valuable to the person.

I don’t want to compromise Steven’s quality of life and the things he finds valuable, by enabling someone else to think they are adding value to his life when really it is about pumping up their own sense of value.

Steven Neary & Boy George

Steven is fascinated by the relationship between Boy George and Jon Moss, the Culture Club drummer. Steven is always keen to build up an extensive back story to a picture, song lyric or video clip. In the narrative of this Culture Club relationship, Steven has built up George as a demanding figure, expecting Jon to pander to his every whim (which may not be too far from the truth).

This all began after Steven watched the DVD of the Culture Club 25th anniversary concert. During the encore of “Bow Down Mister”, George looks across to Jon, and says: “Bring it down Jonny boy”. For some reason, Steven finds this line hysterically funny – even after 100 viewings. I’ve tried to explain what George meant but that only compounds his mirth. Wiping away tears of laughter, Steven says: “Don’t be silly Dad – Drums are noisy – can’t have quiet drums”.

I have a vinyl copy of George’s solo single, “Sold”. On the sleeve, George has blood on his neck. True to form, Steven invented a whole story for the picture, whereby George had cut his neck on some very sharp violin strings. And the dialogue in Steven’s story is: “Plaster please, Jonny boy”.

I found a copy of the 1983 Culture Club Annual in a charity shop. In it, there is a photo of a gentrified looking Boy George sipping a cup of tea, probably sending up his famous quote. Not only does Steven flesh out this photo with a full list of the foods that were served at this feast, but he casts Jon in the subservient role again with the line: “Milk and two sugars please Jonny boy”.

Last night we watched the video of “Do You Really Want To Hurt Me”. In one scene, George emerges from a swimming pool, fully clothed. After much tut tutting, Steven ordered: “Trunks please, Jonny boy”.

I love these stories and Steven’s imagination. They bring a tiny ache as well as they highlight the two Stevens: the one that he really is and that everyone knows, and the Hillingdon version. In the many lever arch files I have of professional reports, these sort of stories never get a mention and yet they contain everything you need to know about Steven’s thinking, his humour, his communication – basically his world view.

Never mind – it’s their loss. “Valuing people, Jonny boy”.

Blessed

Woooooh – what a week. I’m just about coming up for air.

I’ve managed to deal with the mental strain of Hillingdon’s actions for the last year; I’ve learned how to get by on very little sleep and very little food. But the physical exertion of Thursday has left me knocked for six. Three years ago I was lifting very heavy weights in the gym but that feels like an awful long time ago. Humping furniture around for 12 hours had me flat on my back.

Quick news update before the events of Thursday – still no news about the housing benefit appeal. And still no news about the housing for Steven. The housing manager who has been dealing with the case since September went off on leave a week ago. And on Friday, the woman he handed our case over to, has also gone on leave. So, I don’t expect to hear anything until he comes back on 2nd September.

Thanks for all the advice about the hole. I got a builder mate to come and have a look at it – the council couldn’t have been less interested and I reasoned there was no point telling the landlady as she would do nothing as well. My mate reckons it is not as serious as it looks and will hold up until long after we move – and that’s good enough for me. I know how it was caused – two years ago we had a leaking toilet that spread all through the living room ceiling and down the wall. It took the landlady over three months to repair it. Obviously, the filthy water has come through the bathroom wall to my bedroom wall next door and caused the damage. To be honest, I couldn’t give a monkeys – I guess that’s the price you pay as a landlord when you turn a blind eye to urgent repairs.

The support workers turned up at 6am on Thursday and we immediately started to dismantle the flat. The day before, one of them said to me: “Mark, I know we are on duty but could you entertain Steven for an hour. We have a plan”. So, as Steven and I settled down to a double bill of Mr Bean, there was lots of banging and crashing and basically, they cleared the very large cupboard under the stairs. Come thursday, we were able to store a sofa, a mattress, two bed bases and a dining table chair. It was like the wardrobe in Narnia.

Whilst Steven and the guys went swimming I did the weekly shop at Sainsburys and when I got back, I dismantled the other bed frame. The flat was clear by 1pm.

At 2pm, Steven’s new furniture arrived. With Steven it is best to get very sturdy stuff and this stuff weighed a ton. I’d forgotten that I’d ordered a splendid cross between a writing bureau and computer work station, but we just managed to fit it into the living room. I keep sitting at it, feeling like a proper writer.

By 6pm, everything was sorted and apart from a rancid mattress propped up over the hole in my room and the horrible split PVC armchair in the living room, the flat looks great. I can really picture what our new place will look like.

I pulled something in my shoulder in the morning and by evening the pain was agony but it didn’t seem to matter as we had an Abba session reclining on our new sofas. And for the first time in ages, Steven slept for seven hours straight through on his new bed.

And here we stay, for the next week? month? year? until Hillingdon pull their finger out. They are bound to throw a few more hand grenades in because I don’t think they’ve got their pound of flesh yet. But until then, I’ll move between the writing bureau and sorting my DVDs into favourite order on the new shelf unit. Steven will sit on his new sofa and watch Take That on his new TV.

I love the way, Steven picks up the language of the support workers. When the guy who does most of the weekday shifts, leaves on Friday night, Steven always says to him: “Goodnight Alan. Be blessed”.

There’s something about our relationship and the great support I get from all the people (that means YOU) fighting our corner, that despite Hillingdon’s tactics, perhaps Steven and I are blessed.