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Steven Neary & Sting

Two Christmas Play stories. I find them really distressing to write but they do end with a Steven, Monday joke.

Yesterday evening, Steven dug out an old video from his schooldays. This one was from 1997 (so, he would have been 7) and that Christmas, the school put on “Children’s TV Favourites” for its Christmas Show. Steven’s class did Bananas In Pyjamas and Steven was over the moon to get one of the main parts – B2. Steven was loving watching it back, giving a running commentary to his support worker on who all the main players were. I found it too upsetting to watch and slinked off to the kitchen and protected myself by cleaning the kitchen cupboards. What was so distressing for me was how the 17 years since have treated the class of 97. Over half of them are either dead, trapped in ATUs, stuck in so-called independent living flats, or in residential accommodation hundreds of miles from their families. All that innocent joy as a class of bananas sang their hearts out to “we’re coming down the stairs” has been stolen by the stinking, dis-interested world of adult social care. Those kids deserved SO much better from the world.

On to today. Steven’s history with Sting goes back to the 1999. That year the school put on “Millennium Here we Come” and Steven’s class did the moon landing.They entered the stage to “Walking On The Moon”, so Steven became interested in The Police. In the programme for the production, Steven is listed as “Neil Armstrong” but ask him and he said: “Steven Neary’s playing Sting”.

This morning Steven turned up at the Arts centre for his morning music session. Yesterday, we did a compilation tape for him to play back today. We have been working through the alphabet and have reached artists beginning with P (The Pet Shop Boys, Puff Daddy, Peters & Lee). The first track was “Every Breath You Take”

Steven: Dad – Sting’s playing a ……?

Me: It’s a double bass Steve.

Steven: A Bass! Like a pizza base.

He found this idea hysterically funny – “Sting. Don’t get pepperoni on your double bass. You’ll make your fingers all saucy”

Thank goodness he has got support workers who are as caring and interested as those staff in Bananas in Pyjamas. I know, that whilst I’m away later, if Steven starts to get anxious or worked up, one of them will say: “Steve – tell us your Monday joke about Sting” and everything will be all right.

One Man’s Safe Care is Another’s Maximum Expenditure Policy

I’ve been feeling so bloody low since Wednesday. First up was the news on Tuesday that my request for extra nights won’t get to Panel. I was advised that the LA now operate a policy whereby when deciding on funding a care package, they compare with cheaper options that they feel will still meet the assessed needs. I was given the example of a recently opened block of “independent supported living flats” where at nights, there are two support workers present per nine residents. This is obviously cheaper than 1:1 in someone’s own home. Then the following evening around 7pm, I came past the same flats and noticed all the lights were on. Nobody was in the communal room. One support worker was sitting on a chair in the passageway, reading a paper. All the residents must have been in their rooms.

What kind of life is that? Where is the engagement? Steven is very busy between 7pm and 9.30pm. He does lots of shared things during that time, either with me or with his support worker. We do lots of talking at that time of night. I think he would be totally freaked out if he was left alone in his flat from 7pm until whenever the support arrives the next morning. I think he would be very very scared.

Two years ago, Lucy Series wrote the following blog post about Worcestershire Council’s brazen plan to operate a “maximum expenditure policy” – http://thesmallplaces.blogspot.co.uk/2012/11/we-were-right-to-be-worried-about.html The bottom line is that anyone with care needs that cost more than a residential placement would only get their needs met up to the level of the placement, or be forced to go into a residential placement. This was their statement on the plan:

‘It was noted that application of the policy could result in services being delivered that would not be people’s first choice about the way they receive care. In such circumstances there will be a range of options discussed with service users, including arrangements liked shared living, assistive technology and other types of appropriate support to meet assessed eligible needs rather than expectations. This aims to balance available resources with the duty to meet assessed eligible need and to do so in a way that was transparent, equitable and enables the best use of resources. It is expected that this will lead to an agreed positive outcome in most cases. An appeals process will be available if required

Shocking deception and use of language to cover the true situation, isn’t it? But it looks like it’s catching on. I’m not sure how they can square an assessed need of 1:1 support at all times with 2:9 support in a supposed “independent environment”. And of course, if the person has to move into a residential placement because their needs WON’T be met at home, there is no way they will get 1:1 support there either.

A couple of years back, there was the infamous case of Kensington & Chelsea where, fed up with paying for night time support for a client, the LA “reassessed” her needs and decided that her night time needs could be met with incontinent pads (she wasn’t incontinent). (the full judgment is here – http://www.bailii.org/uk/cases/UKSC/2011/33.html). It was totally cynical to argue that her needs were still met but sadly, the court agreed with the Royal Borough.

These decisions are important because they shift the social care foundations. Forever on the lookout for a loophole, LAs seize on these decisions and push the boundaries even further. Humanity and decency are long forgotten ideals. Compliance with the Mental Capacity Act a forlorn hope. Nothing is pure enough in it’s intent that it can’t be manipulated into an abhorrence like a maximum expenditure policy.

And then today, Chris Hatton posted the following link on Twitter – http://vitalguard.ie/?_module=page&_view=default&id=about-us&menuid=27. A lovely, heroic company who’ve built a “seclusion room contactless monitoring” system. Every single word in that “system” chills my bones. But why should it, the people in the independent living flats the other night might just as well have been in a seclusion room. The residents had a “contactless” evening and night. Don’t dare hope for your loved ones in these places to be engaged – being monitored is the best we can aspire to.

All this horror has got inside my head. I keep fantasizing about what is going on behind the locked doors of those flats. Would the support worker ever put his newspaper down and go and talk to one of the residents? And I keep getting pictures of Steven in one of these places. Frightened. Lonely. But he wouldn’t be there for long. He wouldn’t;’t be able to cope with the anxiety of the situation. His behaviour would deteriorate and he’d end up in a locked ward or the criminal justice system.

And it wouldn’t matter to anyone because the maximum expenditure policy hasn’t been breached

The #LBBill is all about allowing people to live in their own home or a home of their choosing. Faced with the likes of Worcestershire CC, Royal Borough of Kensington & Chelsea and Vitalguard, we’ve got one heck of a job on our hands.

Erring Again

I was just listening to the Radio 5 Live discussion about Lord Freud’s remarks about disabled people. I suddenly realised that it was 2 years ago today that I was interviewed by Victoria Derbyshire on the same show about Hillingdon’s decision to stop my housing benefit, which led to over a year of terrible stress whilst Steven and I faced the prospect of becoming homeless.

Yesterday, 14 months after the Lower Tier tribunal rejected my appeal, I received notification that the Upper Tier judge had allowed my appeal:

“The decision of the first tier tribunal contained an error on a point of law. Accordingly, I allow the appeal and I set aside the tribunal’s decision”.

The case rested on Hillingdon’s assertion that half the value of the matrimonal home was available to me. I could collect my half share (despite the fact, my very sick wife was living there) and that share disallowed me from housing benefit.

The judge gave Hillingdon’s valuation and decusion short shrift:

“As a matter of common sense, it seems unlikely in the extreme that a purchaser would pay just under half the vacant possession of a property for a half interest that would not enable him to occupy the property without first obtaining some sort of court order against a person suffering from paranoid schizophrenia who was in occupation of a former matrimonial home, bought for the purpose of being a home, and who might be entitled to a property adjustment order. If the tribunal wished to find as a fact that the value of the claimant’s interest was £109k, it was incumbent on the tribunal to give adequate reasons for a finding which was so far from inherently probable”.

So, we won. I dont feel any sense of victory. I dont feel joyous. I feel a confusing mixture of exhaustion and anger.

Twice in four years, Hillingdon have made unlawful decisions that have had enormous impacts on me and my family. There will be no consequences for them for this latest ” erring”, just as there wasnt for their illegal detention of Steven for the whole of 2010. Their err is met with a shrug of the shoulders.

And it feels like we’re about to face another battle. In my last blog post, “Cheap Nights”, I wrote about how Steven may be prevented from living in his own home, after I’ve gone, because they could find a cheaper way of providing his care, regardless of his best interests.

I was feeling pretty down anyway after reading the judgment but on the way home from work last night, the bus pulled up by the supported living flats that the social worker talked about on Tuesday. It was just after 7pm. All the lights were on. Nobody was in the communal room. There was one guy, probably a support worker, sitting on a chair in the passageway, reading a paper. Where were all the residents? I guess they were all in their flats, on their own, trapped there for the rest of the night. Nobody to talk to. Nobody interested. I cried. That scenario would terrify Steven.

To err is human. But Hillingdon’s two errs, were completely devoid in seeing anyone human in their decisions.

Cheap Nights

I had an update review of my carer’s assessment this morning.

Before I launch, I just want to point out that I’m not knocking the social worker. She is cool and in a way, is only the messenger. The problem is with the dodgy policies that she has to work with.

Regular readers will know that I am in the process of buying a flat with the purpose of using it three nights a week so that I can try and get some decent sleep. The other purpose is to transfer my workplace to the flat, saving enormously on the rent I currently pay for my work.

At the moment, Steven’s care plan states that he needs 1:1 support 24 hours a day (2:1 support whenever he goes out). In addition I receive 42 nights a year respite allowance. For the last few months, I’ve been so ground down with tiredness that I’ve been making the respite allowance up to 52 nights (1 night a week) out of my own pocket.

Anyway, at today’s meeting, the social worker announced that. although my request hasn’t come before Panel yet, the management will only agree to submitting a proposal for two nights per week. Obviously this is more than the current allowance but 1 night short of what I had asked for. Therefore, the revised care plan will work on the assumption that I will be doing 5 nights per week.

Where it gets sticky is when she told me that the policy is to compare the cost of a package in the person’s own home compared to the cost of a package elsewhere. Best interests don’t come into this at all. She used as an example of a cheaper package, the new supported living flats that have recently opened near my workplace. Each resident has their own flat with its own front door. All of them have support needs similar to Steven’s. However, their night time arrangement is very specific. They engage two night time support workers to cover nine flats. I’m not sure how that works practically because presumably the resident is in their flat behind their front door. I guess the support staff have keys to each of the flats and let themselves in to check up on the residents throughout the night. Or perhaps each flat has Telecare? I don’t know. But the point is, this sort of night time care works out cheaper than 1:1 in the home, albeit that I’m only asking for three nights.

Interestingly before we got onto this, we talked about the future and I told the social worker that once I’ve passed away, Steven will have the new flat that will become his. But depressingly, it looks like he may never get the chance – either to stay where he is now or move to my flat. Both of them would require a night worker 7 nights a week, and if they won’t pay for three, they are hardly going to pay for seven.

All this makes we want to jump off the nearest cliff. We talked about how much Steven struggled with communal living the year he was held in the Unit but that won’t matter in the future. No matter how much he loves and thrives in his own home, he won’t be allowed to live there because it is seen as too expensive.

Independent supported living is nothing of the sort. Each of the residents of those flats might as well be in a communal residential home. It’s pooled budgets. It’s pooled resources. It’s pooled lives.

I am so scared of the future.

The Support Business

I managed a lay in this morning. It was nice. Dozing but every now and then, refreshing twitter to see what the world had to say. There was another interesting conversation taking place between the positive behaviour people and some people who are less positive about the subject.

I know I’m biased after Steven’s dreadful year in the positive behaviour unit but by and large, I fall into the camp that prefers a wider scope to therapeutic intervention than just focusing on behaviour. Sara Ryan popped into the conversation and likened PBS to a cult. That’s how 2010 felt to me – like Steven had been kidnapped by a cult for a year.

Meanwhile, Steven was downstairs with his support worker listening to a compilation tape that we compiled yesterday afternoon. The theme of the tape was “people who have died”. Steven was educating his pal – “Ian Curtis was sad cos Peter Hook pinched his Aero”.  There was fantastic engagement. It got me thinking, how it would be passed through the behaviour funnel. At the Unit, Steven’s conversations were often dismissed as “inappropriate”. That was hard for him because they often refused to engage with him in a Basil Fawlty conversation – I think they saw it as “not sensible enough”. But is this behaviour?

I’d hate to be defined purely by my behaviour but at the Unit, behaviour was all that mattered. I’d like a different frame. Steven is a human being. Steven has autism. Steven is a guy in his early twenties. Behaviour comes into it, but so does thoughts, feelings, life experiences, dreams – all the things that make us human. I remember being told by the manager of the Unit – “all behaviour is trying to communicate something”. He is probably right but rather than endless interpreting, why not try listening? If you engage with Steven, talk to him, listen to him, try to understand him, then his communication is pretty clear.

It seems to me that much of this is about self importance – I have a model that explains everything. 90% of the time with Steven, is about being with him, talking, sharing, relating. I like to think that it is these moments that give him meaning to his life. There are times when he is in meltdown that a different kind of support is needed but hopefully, it comes from a loving, interested in him, place. I’ve read many times that it is pointless trying to analyse behaviour during a meltdown – the communication is “my anxiety has reached unbearable level. I can’t process anything. I can’t see or hear you”. It used to make me cross when the professionals at the Unit got out their notebooks during these meltdown times. Especially as the only consequence was that they used it as evidence to detain him.

As I lay in bed, a million things were going on for me – a million thoughts, several swirling, conflicting feelings, some meditations, some dreams. But not a lot of behaviour.

I am all those things. And so is Steven and all learning disabled people.

An Alternative Social Care Dictionary

The other day on the train i eavesdropped two guys entertaining themselves by composing an “alternative” handbook for their business. They found their own ideas hilarious. I had no idea what their work was because the language was beyond me. But it got me thinking.

Yesterday I posted several tweets offering my contribution to an Alternative Social Care Dictionary. It must have struck a chord because I got 78 new followers in 2 hours. It got a fair bit of criticism as well with people commenting that I was too cynical, unfair or didn’t understand some of the things I was writing about. The last point, I felt, proved my point. That most concepts and language in social care is impenetrable. I’ve also learned over time that the actualisation changes around the country. So personalisation in Dunstable is a very different kettle of fish to personalisation in Dudley. Social care doesn’t travel very well.

So sorry if I offend or am talking out of my arse but here is my first compilation (please feel free to add your own):

Service User – a different species to me, possibly not quite human.
Carer – Schmuck.
Person Centred Care – system centred care
Choice – you’ll get what’s offered.
Independence – you’re on your own now.
Working in Partnership – Dont worry, we wont ask you for your views or experience of your loved one.
Placement – a container, usually hundreds of miles from your home.
Inclusion – we’ll take you to watch someone swim at the baths.
Local services – Costas.
Accessing the Community – spending 3 hours in Costas with 4 other people from your supported living flat.
Fairer Charging Policy – Bingo. We can charge them for spending 3 hours in Costas.
Transparency – the mist thickens.
Candour – I’m channelling Pinocchio, or its none of your godamn business.
Assessed Needs – what I think you are like.
Best Interests – our view of what your life should be like.
Therapeutic Intervention – fistfulls of anti psychotic meds.
Positive Behaviour Support – dont be autistic.
Indicative Budget – the Poundland of care packages.
Fairer Access to Care Services – loser.
Commissioning – we cough up for the cheapest support, run a mile and then bunker down in silence.
Resource Allocation System – how we convert your life, beliefs and aspirations into a monetary value.
Day Centre – historic 1970s building, now a block of luxury flats.
Panel – the masonic lodge of the social care world.
Putting People First – after the service, the commissioners, the providers and Uncle Tom Cobbley.
Challenging Behaviour – not being listened to or understood.
One Page Profile – you try writing your autobiography on a postage stamp.
Pooled Budgets – buy one get one free.
Risk Assessment – we can find a reason to stop you doing anything.
Personalisation – Phew, got rid of another annoying statutory duty.
Hubs – Go on, you try and make a pie in the swimming pool.
Community Integration – a walk around the precinct before a Fanta in Burger King.
Care Champion – someone we couldnt make redundant so weve given them a nice badge instead.
Carers Assessment – we’ll waste an hour and a half of your life and have a good chuckle at your raised expectations.
Multi Disciplinary Teams – tea and bickies.
Behaviour Management Plans – how we restrict your personal growth.
Continuing Care Assessments – where we haggle over who foots the bill for your existence.
Circle of Support – how your friends can save us a fortune.
Community Programme – a reminder you will always be on the outside.
Service Provider – a person who has nice holidays in Dubai.
Transition – Shit. They’ve hit puberty. Can we send them to Wales?
Empowerment – dont ever forget, who has the power here.

Shrink Wrapped

This post is inspired by Sara Ryan’s post yesterday about the Psychiatry of Intellectual Disability Conference.

I have no idea why Steven goes to see a psychiatrist three times a year. We get an appointment letter about three weeks beforehand and Steven dutifully goes off with his support workers for a 10 minute appointment.

Steven has never been diagnosed as having a mental illness. In fact, all the post appointment reports, remark that there was no sign of any mental health problem.

I don’t get to see the reports unless I ask for them. They are a closed communication between the psychiatrist, the GP and social services. They always follow the same format. They start with Steven’s physical presentation and comment that he is well turned out and clearly looks after himself. We then get a paragraph about sleep; a paragraph about behavior and a conclusion about medication. Thank you. See you in four months.

Was Steven mentally I’ll in 2007 when he was first prescribed rhisperidone? I don’t think so. He was having a developmental crisis triggered by the impending leaving school. In hindsight, I think he was being quite prophetic. Our experience with adult services has been complete hell and has caused much mental distress to all of us.

What about 2010? There was a whole team of psychiatrists involved then, doing umpteen mental capacity assessments on Steven. But all of them sailing past the obvious that their decisions were causing such distress for Steven.

And since 2010, Steven clearly experiences some trauma from being kept away from his home for a year and whatever he encountered in the Unit. But we’ve never been able to get any of the professionals to recognize that trauma because obviously they were completely implicit in causing it.

So, back to the start. What is the point of psychiatry for the learning disabled? Clearly, people with learning disabilities can be as prone to mental illness as the rest of the population. But it seems to me, that even without a mental health diagnosis, many people with a learning disability find themselves caught up in the mental health system. I’ve never read anything that satisfactorily explains why this happens.

One of the aims of #LBBill is to remove autism and learning disability from the mental health act. I suspect this will be the most contentious part of the Bill because so many people have a huge investment in keeping it there (for all the wrong reasons). It might stop the contrivance of the MHA where people suddenly find themselves under a mental health section in order to keep them in a hospital or an assessment or treatment unit. Only this week,at a fringe meeting at the Conservative party conference, Jeremy Hunt said that the majority of people were in units for “clinical reasons” and subsequently, moving them on was difficult. For what its worth, I think that’s bollocks.

So, can anyone answer my question – why does having a learning disability seem to automatically earn you a one way, lifelong, ticket to a psychiatrist?

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