Living In A Box

First the good news. I have found somewhere for Steven and I to live. It’s available from mid May and I can afford the rent without having to rely on Housing Benefit. It also means that Steven’s compensation money will not have to be used to pay any rent. It’s also within about 25 minutes walking distance from my work, so I will save on travelling expenses.

Thats the end of the good news. The bad news (and theres quite a bit of it) is that it’s only a studio flat. One room and a small kitchen and shower room. It boasts a dressing room but I can’t quite see where that fits in. Steven can have the bed which pulls down every night and I’ll buy a sofa bed for myself. The room is very pokey, so they’ll probably only be room for an armchair, the TV and a storage system for all Steven’s DVDs and CDs. I’ll flog my DVDs and I’ll trade in the PC for a laptop. It’s ironic because the whole flat would probably fit into one of the rooms we had at Center Parcs last week.

Goodness knows how we’ll manage with the lack of space. I think Steven will find it very difficult. He likes having his own space and that is going to be very hard. We’ll have to stop the overnight respite as well because there won’t be anywhere for the support worker to sleep. Although to be honest, as a result of the fairer charging policy, it wasn’t really worth having the respite – having one night out was costing quite a bit and that’s before I even set foot outside the door.

Hillingdon will be persuing their application to manage a private tenancy on Steven’s behalf. I had an interesting conversation with a housing lawyer, who felt it is scandalous, that someone with such high level needs as Steven is being forced into private housing, but that’s their local housing policy for you. I’m fascinated to see how they present Steven to potential private landlords in order to secure a tenancy. I guess it will be the complete opposite to 2010. Then, in order to get their way, they had to spin Steven in the worst possible light. Now, they’ll have to present him as unproblematic. It doesn’t matter; to them the spin is everything.

I think we’ve got some tough times ahead.

Update 26th March 2013:

I heard back from the landlord of the studio flat today via the estate agents. He will not be offering us the tenancy as he doesn’t think the flat is suitable for a disabled person. I don’t know whether there’s anything discriminatory there but he’s right. A studio flat is wildly unsuitable but I haven’t got much choice. That’s the third place we’ve been turned down for now – I think the council have really underestimated how difficult it is to get a privately rented property when one of the occupants is LD.

I also had an email from the council – they also think the studio flat is “unsuitable and too limited”. No shit Sherlock. They just don’t get it. We’re only in this horrible position because of their rigid interpretation of the law and their own local housing allocation policies.

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Why Risk Assessments Are So Risky

photo (12)We’ve just got back from a week’s break at Center Parcs. It was a wonderful experience. There was me, Steven and two of his support workers. We had an “exclusive executive villa”, which meant we had our own spa pool, steam room and games room. Four bedrooms, each with their own en-suite facilities (bath, toilet, a grazing yak). Too bad that we had the villa at the furthest point of the site, meaning a good 35 minute walk to any of the facilities. We needed the exercise and by crikey, we got it. By the third day, Steven was flagging and he wanted a day in. So, we just had two two-hour sessions in the spa pool, with his new Muriel’s Wedding Soundtrack CD seranading our bubbling.

The support workers were fantastic – they wouldn’t let me lift a finger. They took charge of night-times, so for the first time in about two years, I had some unbroken nights sleep. I can’t tell you how stange it feels to wake up feeling sprightly, having had seven hours un-interupted sleep. I also observed the support workers as we were going about our business on the park (or accessing the parc community). They know exactly what to do when faced with situations that Steven might find anxiety provoking. He’s always troubled by screaming babies and in order to enter the Subterranean Water Paradise, we had to walk through the “Buggy Bay” – literally over a hundred buggies parked, of course alerting us to the possibility that they were probably going to be over a hundred toddlers inside the Subterranean Water Paradise. And there were.

Of course, if Steven had still been in the positive behaviour unit, he wouldn’t have got beyond the buggy park. In fact, he probably wouldn’t have even been allowed to set foot in the whole park. On their assessment scale model, a buggy park would have scored “an intolerable risk”. End of activity. He wouldn’t have been allowed to do his favourite holiday activity; going down the water slides and flumes because the risk assessment would have considered the possibility of a meltdown at the top of the flume, putting others at risk. He wouldn’t have been allowed to go out for a meal at the wonderful Forresters Inn – they served their drinks in glasses (not plastic beakers) and glasses would have been classified as a potential weapon. The village shop would have been out of bounds – too confined a space. A walk around the lake would have been out of the question – Steven might have decided to run into the lake and he is too big and strong for anyone to stop him. And climbing up two steps (slippery ones!) to get into the spa pool would ahve been a complete no-no.

If you think I’m exaggerating, one day I’ll post a copy of one of Steven’s many risk assessments and you’ll see that no stone is left unturned in assessing the risk of Steven living a life.

Needless to say, nothing untoward happened. Myself and the support workers know that if we are walking along a footpath and a howling baby starts coming in the opposite direction, you engage Steven in an in-depth conversation about Take That and he doesn’t even notice the child. He’s not going to have a meltdown on the wild water rapids because he is too busy singing “Yes Sir, I Can Boogie” in his excitement. Etc etc etc.

But when everything is assessed so microscopically for its potential risk, of course a risk is going to be found. Thankfully, I’m prepared to take the risk of finding a grazing yak on my personal snooker table and being subsequently head butted by said yak. And in the process, Steven might just have a life worth living.

The Price Of Trauma

I’ve had a bit of a change of heart after the last three nights. Ever since the court case, I’ve always been very uneasy on the subject of damages. I loathe the compensation culture that exists in this country. I let the Official Solicitor persue the subject of Steven’s damages and tried not to get involved. I went against advice from my barrister and didn’t persue any damages for myself. And since Steven received them three weeks ago, and the whole housing situation and the manipulative way Hillingdon are treating his damages, I’ve actually been thinking about giving them back. The damages are proving more trouble than they’re worth.

However, the last three nights have been awful. Steven has had no more than four hours sleep each night since Tuesday; I’ve probably had about three hours. He’s been waking up about 11pm, in a terrible state of upset and anxiety. This morning at 1.30, it all came out.

On Fridays Steven goes to a day centre. It is run by the positive behaviour team and Steven often bumps into the manager there. We’ll call him John Green, for the sake of argument. This is the same man who in 2010, cancelled Steven’s holiday to Somerset two weeks before we were due to go as the positive behaviour team had decided Steven was too great a risk to be unleashed on the good folks of Burnham on Sea.

So, I’m sitting on Steven’s bed as he’s trying to rip his duvet up and he’s sobbing. Eventually, he grabbed me in a bear hug and said he didn’t want to go to the day centre today. I kept reassuring him that he didn’t have to go if he didn’t want to and then after an almighty sob and scream he shouted: “Don’t want John Green tell Steven Neary can’t go to Center Parcs”.

I spent two hours reassuring him that we ARE GOING to Center Parcs and nobody is going to stop us and eventually he fell asleep at 3am.

I got back to bed but haven’t slept for the many thoughts running round my head. One of the worst is the question; when will the trauma ever end for him? Has it now mapped out a life for him of distrust and uncertainty? No matter how much he trusts me, Steven has learned that Dad can be trumped. There are people more powerful than Dad who can make huge decisions in his life. Even if we plan something together (and the trunks, birthday presents and snacks have been in the bag for over a week, Steven is checking the bag at least 10 times a day), he knows that someone can come along and change all those plans. I don’t see an end to that.

I am raging. I keep thinking of all those pointless meetings over the last three years with the in-house psychologist and the positive behaviour team and the amount of energy they have put into denying that Steven has suffered any lasting effects of 2010. They couldn’t give a toss about him; it’s all about accountability. But if they acknowledge that, the damages may have been higher. Money drives again.

I can manage the next three days. I’m expeccting the next three nights to be the same and Steven’s distress will only abate when we’re on the road on Monday morning.

But it will be temporary. There will be something else that is important to him. Something else that will cause great anxiety because he’ll be terrified that it will be taken from him again.

Of All The Job Interviews, In All The World

A friend of mine sent me the link to a job advert on Hillingdon Council’s website. It is for a “Positive Behaviour Manager – Children’s Services” and is actually based at the same place where Steven was held in 2010. My mate dared me to apply for the job. So here, with minimal fabrication, is a transcript of my interview with Deidre Tressell – Deputy Director of Person Centred Transformation (South):

Deidre: Welcome Mr Neary. First of all, can you tell us what experience you’ve had of dealing with challenging behaviour?

Me: Well….. I had to deal with you kidnapping my son for a year. That was pretty challenging.

Deidre: Ooops. My bad. Never mind. Lessons have been learned. Lines have been drawn. Bla bla bla. And how would you work with a child displaying inappropriately challenging behaviour?

Me: I’d congragulate them on being abe to communicate their feelings. And then I’d make sure that all the people involved in working with them were trained in tuning in and relating to the person.

Deidre: So, your emphasis would be on the professionals, rather than the service user?

Me: All the time. They’re the ones finding the behaviour challenging after all. Seems a good place to start.

Deidre: A novel idea Mr Neary but self reflection is not our modus operandi. At Hillingdon, we have a proven track record using a model where every aspect of the service user’s life is broken down. The goal is to take away every coping mechanism they have and rebuild them the Hillingdon way.

Me: Sounds intruiging. Does it work?

Deidre: Every time. They completely collapse. And we meticulously log their breakdown and use it as evidence to send them to a permanent placement, usually many miles away.

Me: And some other schmuck authority will pick up the bill for their care?

Deidre: Exactly. You’ve been doing your homework Mr Neary. You’ve been reading our policies. We call that one a transformation pathway.

Me: And my job will be to nudge people along that pathway?

Deidre: In the best person centered way of course. Talking of which, how would you empower the service user by facilitating their person centred plan?

Me: I guess I’d start by asking them what they’d like to do. What they want from their life……

Deidre: Oooh, risky. You may end up having to say “no” to everything they ask for. Try again..

Me: Perhaps I could suggest to them it would promote their independence better than instead of going to the gym, which they have asked to do, they could stay in the residential unit and watch re-runs of Hetty Wainthrop Investigates. It would also give the staff more time on Facebook too.

Deidre. Excellent. We encourage creative person centred planning like that. The service user has to realise that they have many choices we can empower them with.

Me: Thank goodness there are so many television channels these days.

Deidre: Let’s get on to the main part of the job specification. At a conservative estimate, 95% of your time will be spent compiling in depth risk assessments and writing risk management plans. Can you meet that criteria Mr Neary?

Me: I suppose my ideas on risk may be considered a bit radical. I like the quote that all life carries risk and what’s the point of making someone safe, if they only end up miserable.

Deidre: Sounds like the wooly theory of someone with no knowledge of extreme challenging behaviour.

Me: It was a High Court judge actually.

Deidre: We find our assessment processes extremely successful. If they’re thorough enough, we can practically prevent someone doing anything. Think of the cost savings in that. Remove all quality of life and contain them; that way you get plenty of raw data about their challenging behaviour. That’s what we’re here for.

Me: Yes, I can see that but what about DoLs in those cases?

Deidre: Dolls are playthings Mr Neary – we encourage more worthwhile pursuits. Where do you stand on social stories? Do they have a place in promoting self directed support, whilst underpinning the risk management plan?

Me: I’m getting the hang of this now. You could have a story called: “Mopping The Floor Of My Residential Unit Is Great”. That point would need to be repeatedly emphasised until the client was brainwas…., erm, receptive to the idea. Perhaps, for balance, we could have a few pages like; “Going to the cinema is bad becuase I might choke on some popcorn”. That sort of thing.

Deidre: Super. We’ll introduce you to the speech therapist. You’ll get on like a house on fire. Good care costs mr Neary, in these austere times, how can we manage that?

Me: Ummm. Provide cheap bad care? Or no care?

Deidre: Good Lord no. No, the answer is to get them to pay through the nose for their care. That’s the beauty of personal budgets and the fairer charging policy. We give with one hand and grab straight back with the other. Perfectly equitable.

Me: More to go round then? For all the service users?

Deidre: Well there’s more to go round but we can’t have the users exhausting the piggybank. Since the introduction of personalisation, the management team has grown fivefold. Get a carer to agree their indicative budget and it’s a healthy bonus for the whole team.

Me: I bet you sing a daily hymn to the RAS.

Deidre: One final question. Do you believe there should be specific measures in place to work with the challenging behaviour of someone with autism? And is there a case for shitloads of anti-psychotics in their care plan?

Me: I know this one. I’d write a 36 page report without any reference to autism whatever and conclude with the learned wisdom: “If you know 1 person with autism, then you know 1 person with autism”.

Deidre: Shake my hand Mr Neary. I can see you feeling quite at home here.

I start next Tuesday after my two hour training course: “Everything you ever need to know about the Human Rights Act, The Mental Capacity Act and the Deprivation of Liberty Safeguards”

A Different Kind of Trumping

This was wonderful. After my post on Saturday about social care trumping, I encountered another kind of trump this morning.

I went to the bank to draw out a large sum of money to pay the two support worker’s wages for the holiday and the car hire to get us there and back. I had my cheque book and several proofs of ID. That wasn’t enough. I had to go through a whole series of security questions. And then, they wanted a full explanantion of what I would be using the money for. It was the same as when I paid the damages award in two weeks ago; loads of questions about where the money came from. I didn’t want an argument and had nothing to hide, so told them the whole story. Her hard outer shell disolved and she said: “That’s lovely Mr Neary. I’m sure it won’t be a problem but I’ll just have to check with my manager”.

Whilst she was gone, two chaps came up to the next counter. They had no cheque book or ID but wanted to withdraw £80,000 in cash to pay for some fairground equipment!

Trumped.

A Game of Social Care Trumps

Here’s a question for you. Is there any area within the social care field where money isn’t the trump card? Is there any argument that can be put forward that isn’t going to be trumped by money?

I’ve been thinking a lot about trumping recently (I must sort out my appalling flatulence). In the ongoing saga of our probable homelessness, Hillingdon’s argument is that their housing allocation policy of non eligibility to social housing for anyone with capital over £30,000 trumps their duty of care towards a vlunerable person. Forget the moral dimension of the situation; Steven only has the capital because of the illegal act in 2010. A LOCAL policy takes precedent over the threat of an extremely vulnerable adult becoming homeless. It also trumps a High Court best interests judgement as well. There aren’t many people I’d guess who would consider it in Steven’s best interests to be forced to become a private tenant and have to use all of his damages award to pay his rent. Trumped by money. Trumped by local policy. Fuck the ethical element and the human being at the core of its game.

I was able to use the money trump myself once. Hillingdon’s reluctance to provide any respite for Steven except at the unit where he was unlawfully held for a year, was couched in terms like “encouraging independence”, “flexibility” etc. They also brought into the debate “an equitable service for all service users” and woe betide you if you try to challenge that with a person centered argument. Anyway, after weeks of pointless negotiation becasue we weren’t allowed to discuss the real agenda (money), I managed to get the support workers to agree to do overnight home respite for a ridiculously small fee in comparison to the figures we weren’t talking about. I submitted a proposal and we never talked about independence, flexibility or equitability again. Money talks.

For the past 18 months, I have been following the sad local story about Hillingdon’s plan to close its three day centres and replace them with one smaller hub. (The word “hub” should immediately be a money alert sign). Everyone knows that what it really is all about is money and in all probablility, in a year’s time, some impressive looking blocks of flats will appear in the place where the day centres used to be. A hardy group of parent carers challenged the plan and just before it was about to come before the court, the council backtracked and said they would extend the consultation period. A few months on, the consultation period is over and the three day centres will soon be rubble. For some strange reason, I get sent the minutes of the monthly meetings between the parent carer group and the council managers. It’s absorbing reading; it’s like a 2013 version of The Kings New Clothes. The council’s line, of course, is that the new arrangements at the hub will increase the service user’s independence and the accompanying personal budget will empower them choice and flexibility wise. It doesn’t hold up to any scrutiny whatsoever. One service user spent her time at her day centre preparing her meals for the evening, whilst at the same time enjoying the friendships she has built there. Sounds pretty cool to me. Now, she’ll spend the same time window shopping in Argos. And by the time she has paid for the support worker’s wages and their lunch out of her personal budget, she won’t have anything left to actually go into Argos and buy something. But then again, that’s the beauty of personal budgets. So the meeting goes into incredible detail about peripheral stuff and money never rears its formidable head. It’s conjuring tricks at their finest. It’s like discussing Martha & The Muffins’ greatest hits without any reference to Echo Beach.

Steven has a bizarre card game of Coronation Street trumps. We don’t understand the rules but an Albert Tatlock trumps a Hayley Cropper. I’ve been embroiled in social care systems and their double speak for ages and I still haven’t found my Albert Tatlock that can trump their money card. Especially when their money card is disguised as an independent, flexible Curly Watts.

Afternoon Tea With Coolio

I heard Steven chatting to his support worker whilst he was in the bath this morning – “Steven Neary’s got a very busy hard work today”.

And he was right. This was his gruelling day:

– Watched an episode from the 1993 quarter finals of Gladiators.

– Off to Virgin Active for his water aerobics and spa pool.

– Changed the sheets on his bed.

– Did a complilation music tape that he’s been planning since the weekend. “Going to have Coolio and Bucks Fizz”.

– Watched the Fawlty Towers episode with Mr O’Reilly, the builder. Running commentary throughout.

– Over an hour and half on the computer looking for clips of Moby.

– Catalogued the photos of his grandmother by dress colour.

Interestingly, he didn’t include loading up the washing machine and doing the washing up as part of his hard work day.

As he got out of the cab after swimming, the driver asked Steven what he had planned for the afternoon:

“It’s a big busy. Got Coolio. It’s a marvellous musical montage”.