Service Without A Smile

I’ve spent the last two days ploughing through the draft copy of Steven’s FACS assessment. It is dispiriting reading. To see this lively young man’s life reduced to a series of scores from 0 to 5 rots the soul. In fact, I don’t recognise his life from the document at all. If it’s meant to be a potted summary of who he is, it fails miserably. But then the whole process of care assessments exist as an entity that has precious little to do with the person being assessed. And waiting in the wings is the knowledge that these 0 to 5 scores will be totalled up and fed into a computer and Steven will change from being a score to a monetary value. From a human being to a score of 276 to a cash sum in two simple steps. It seems to me that these assessments are a con – first and foremost they are an instrument for cutting costs, disguised as a service to the person needing care. Secondly, they are food for the large care industry to justify its existence. Somewhere, way down the pecking order, comes the service user and what the exercise is promoted to be about.

Talking of service users, the next phase of the FACS assessment is to have a “one to one meeting with a support planner to review appropriate services for the service user to access”. Support planner? Que? I’d like to see that job mimed on What’s My Line. Even if we leave the mystery of what a support planner is all about to one side for the time being, we’ve still got the second half of the sentence to wade through and decode. Appropriate services? Are there any? What is a service in the adult social care world of 2013?

At the last meeting of my local parent/carer group, some of the following professionals turned up – “Team manager for adult services”, “Team manager for disability services”, “Category manager for outreach services”, “Service Participation manager”, “Carers services champion”. So many people. So many services? When you get down to the nitty gritty of these meetings, you find alarmingly that there aren’t any real services being offered. The Category manager for outreach services talks proudly of its “partnership working” with organisations with snazzy names like Dimensions and Aspirations but try and pin her down to what these “services” actually consist of and you could cut the awkward atmosphere with a spoon. The minute a services engagement manager is appointed, you just know that services have become disengaged. Is this equation a truism – the more service managers employed = the less services available? If you’re going to have 20 senior services managers, you’re not going to have much money left for actual services.

So what happens is the machine starts to feed on itself even more – more services managers are engaged to reinforce the illusion that services actually exist. At school, I had a rather paranoid football coach – when a free kick was awarded against us, he would have all 10 outfield players lined up in the wall – “Most important thing lads – we’ll block the goal from the buggar’s view”. Social care line up all their services managers in the wall in the hope we can’t see through, above or around it. Trouble is, one toe punt, in the form of an innocent question like “So, what services are you actually offering” and the wall collapses.

The truth is, services packed their bag and left the building a long time ago. I’m a bit old fashioned but I don’t see something that is a statutory duty, like assessing someone’s care needs as a service. It’s a duty. We have to wise up to this. I keep hearing people forlornly hanging about for a service that isn’t going to arrive. Trapped in the illusion. Lets forget the idea of services being provided – the only way is to provide our own services. I’m not talking big jobs here – not necessarily collective action. All the things that Steven does during the week have been found by him, me or his support workers. When he goes to the Arts Centre for his music session, we don’t think about it in terms of availing himself of a service – he’s sorted something he wants to do out for himself. He pays his money and gets on with his business of the day. It’s very liberating because we don’t have to engage with the “services” lie – he can realise his own aspirations without the input of Aspirations.

Wouldn’t it be fabulous if that was something we could all aspire to?

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Shirley Bassey & A Fancy

You may want to learn this off by heart. Just in case you happen to be in Cowley over the next three days and bump into a large autistic man who wants to engage you in conversation about his plans for the festivities. I’ve had to learn it and so have all the support workers, so I don’t see why you should get off lightly……

“Sunday – Uncle Wayne and Auntie Jayne are popping in with Christmas presents.
At night time, watch Christmas Top of the Pops with Wizzard and Chip Richard

Monday – Mark Neary’s going to get the Christmas potatoes.
Have a nice fancy at Southlands
Watch Toy Story 1 – To infinity and beyond

Tuesday – Go for a massive swim with Alan & Chris
Alan and Chris are going home early when Mark Neary is cooking the turkey
Watch Toy Story 2 with Big Al dropping his Wotsits on the floor. Get a bowl Al, you messy man”
Mark Neary will put the Christmas crisps and chocolates on the kitchen side bit by the Frosties”
Julie Neary will come for her sleep over.
Go to sleep and rest myself so I’m all fitter for Christmas Day”

Wednesday – Alan’s got a day off – Mark Neary’s doing my bath.
Open Christmas presents of a Mr Bean surprise, A Men Behaving Badly DVD, A Shirley Bassey CD & DVD, A massive
Abba Surprise. And 28 more surprises.
Watch our new DVDs and listen to our new CDs
After lunch, we can eat our Christmas Cheeselets and Christmas Maltesers and sing Goldfinger.”

And as the pre big day anxiety cranks up, we’re probably repeating that script (penned entirely by Steven) over 50 times a day.

Arses and Elbows

This has been my week.

I came home from work last Saturday at lunchtime to find a court summons from Hillingdon for non payment of council tax for the period 1st November 2013 to 31st March 2014. Ironically, it arrived exactly 3 years on from the day I received Hillingdon’s care plan that they were submitting to the Court of Protection for the hearing on 21st December 2010. This is the care plan where they were planning to send Steven permanently to a hospital in Wales, under section. Most people send cards at Christmas – they send letters that threaten the very core of my life.

The bill totalled £479 and this included court costs of £125. Astute readers may realise that the 1st November (the date they say I defaulted from) may ring a few bells. This is the date we moved home and became Cowley men. My heart sank. In theory, it should have meant a simple phone call and everything sorted. But I know from experience that it would be a long, stressful slog.

On Monday morning I spent over an hour in conversation. It took half that time for any acknowledgement from them that I had notified them about the move. Eventually, they admitted that I had informed them three times and had made the final payment on 5th November. End of story? Not that simple. Whilst they acknowledged that I was now living elsewhere, they said they had to keep the account on the old flat open because I hadn’t proved that I had moved from there. How could I do that? A Polaroid of my carpet slippers under the new bed in the new house? Apparently, the final gas and electric bill wasn’t sufficient as proof but they couldn’t tell me what would be acceptable. Trade secrets?

I emailed Steven’s social worker and the housing manager who fixed up the move and asked them to intervene. To his great credit, the housing chap did and he sent me an email later that day to say the account on the old flat had been closed and that I’d receive a new bill if there was anything outstanding. No further action required.

I dont know why (past balls ups?) but I phoned them again yesterday to confirm what the manager had told me. It wasn’t that I didn’t trust him but I wanted something from the actual department dealing with the summons. The woman confirmed that my account was now closed but that I still owed £88.19. I asked her what that related to as I’d paid the bill right up to the day of our move. She announced that it was for “amended court costs”. That threw me – “But we’re not going to court. It was your error”, I suggested. She went to speak to her manager and told me that “under the circumstances we have decided to waive the court costs”. I think I was meant to express my gratitude at this point but something niggled me – “The costs were £125 the other day. What changed? £88.19 is a very specific figure”.

You can probably guess the tag line. “Actually, your account is £36.81 in credit Mr Neary – would you like the credit transferred to your new account?” We’d already had a long discussion about how the new account is in Steven’s name, so I asked for the money to be refunded directly to me. “Oh – that takes between 8 to 12 weeks to process. Have a nice day Mr Neary. Is there anything else I can help you with?”

In seven days, I’d gone from having to appear in court on 7th January for a debt of £479, to the council being in debt to me to the tune of £36.81. I didn’t feel quite in the right frame of mind to complete a short customer satisfaction survey!

Meanwhile, I’ve been trying to sort out Steven’s “mentally impaired discount” on the new house. Everything I’ve provided has been rejected: his DLA letter; the last letter from the psychiatrist; my deputy order from the CoP. I even cheekily sent the first two pages of Justice Jackson’s judgement that covered the nature of Steven’s disability. None of that is sufficient proof. Like the situation with my council tax, I got the social worker to intervene, which thankfully she did, and all of a sudden, the matter is resolved. Or it will be – these discounts take between 8 to 12 weeks to assess. So in the meantime they expect Steven to pay the full amount. Cheers.

One thing that strikes me is the Bubble. Both problems needed internal input to resolve – nobody from the outside world was trusted. It must be horrid to go to work every day knowing that you’re not going to trust a soul you speak to from the outside world. But within the Bubble, everyone is safe and comfortable.

It’s all a bit balls really.

Logging Unreality

Wow. My blog post from Sunday – “Logging Reality” has drawn some fantastic comments, both here and on Facebook and Twitter. It seems like I’m in the minority amongst parents and carers in my actions to rid my house of all the reporting logs, ABC charts and SMART forms. Most parents and carers like to have a record compiled by their support staff, usually in the form of a daily diary. There has also been several comments that see these records as a safeguarding issue – they are seen as protecting the person if things go wrong.

I guess part of my resistance to the logs is the scars of the experience of 2010. I sat in a courtroom in 2011 where one aisle was blocked off by boxes of social care records from Steven’s year in the Unit. Thousands and thousands of pieces of paper and I didn’t recognise my son from any of them. All the recording done at the Unit seemed to serve two purposes. The main one was the gathering of evidence to support the council’s plan that Steven needed to be moved away. As the judge said, there was no analysis of these records – there was no consideration that there might have been a different option to their plan. So, basically the records were contrived to support an agenda. The second purpose is along the same lines. It was to present the Unit in the most favourable light and show they were doing everything they could to “transform” Steven. Small examples, like I’ve quoted before, was the recording of food. I wasn’t allowed to read any of the records whilst Steven was there – some nonsense about breaching other people’s confidentiality. But every now and again when they weren’t looking, I’d sneak a look. “Blimey Steven – you had steak and brocoli for tea last night”. “Not brocoli – threw it in the bin”. So, the records became about showing a false reality of what they wanted to be seen to be doing for Steven. It ran and ran, even after Steven came home. One day, browsing the home logs, the social worker commented: “He’s only eating carrots now. He was eating a much wider variety of vegetables at the unit. Why are you not keeping that up?” See what I mean? And to reply: “But he wasn’t actually eating a wide variety of vegetables – you were dishing them up but he wasn’t eating them” is massively problematic because the subtext to the brocoli is – your records are based on a lie. A little bit too exposing.

But I digress. Steven has just gone swimming and when he gets back, he will give me an overview of the morning. He’ll tell me which cab driver drove him there, which friends he saw at the pool, what drink he had after swimming, and whether he had his “silly or sensible head” on. I don’t think Steven thinks he is giving me a report. I imagine it’s like any other family when one member comes home after time out and likes to talk about what they’ve been up to. Thankfully, Steven has the language to do that, so we can engage in his phenomenological experience of the trip – rather than a second hand, fettered account from someone else.

I found out on Sunday night after posting the blog that the agency are now insisting the support workers file a report after their shift and send it to the agency. That’s fine with me. I don’t have to be part of the process. And the support workers can continue to devote their time with Steven to engaging with him, rather than making notes. I can see though, that in taking the position I am, it causes big ripples amongst the professionals. They want to be seen as doing something – and they are but what they record is the sterile stuff. In taking a stand, I suppose I’m challenging the whole nature of what the professionals see as having “value”. And trying to rid our home of concealing a hidden agenda behind what could be a useful tool. Tomorrow morning, I get a lie-in whilst Steven and his support worker listen to a C90 tape and dance their hearts out. I come downstairs later and they are both dripping with sweat. It’s fabulous and I know that Steven thoroughly enjoys this time. When we used to have the reports, this wonderful moment became condensed into a tick box called “facilitated physical activity”. The heart and soul ripped from one of Steven’s favourite events of his week. We used to have a support worker who wrote the most fabulous reports, one of my favourites being: “Steven oozed with delight as he sang Heartbeat to his friend Dave at the Mencap pool”. A few weeks at the Unit and that was soon knocked out of him.

If I believed that these reports had a single value to our life, then obviously I would encourage them. But as things stand, and because I need to hold on to some semblance of trust, I prefer our life lived rather than recorded.

Logging Reality

Several months ago I made the big decision that I was not going to allow any more logs to be compiled or kept in our house. You may remember that the social care team and positive behaviour team wanted us to keep records of everything – what Steven ate each meal, what he got up to during the day, what he talked about, and their biggest interest was in recording every aspect of Steven’s behaviour. I had four lever arch folders of logs, written over an 18 month period and nobody ever seem interested in the content of them. It was recording for recording sake. When I took them to meetings, the only outcome was that we should even more logs – they cry always being that the logs didn’t contain enough information for the professionals to carry out any analysis. Analysis of what? Why?

I snapped one day. I read the log and saw the following entry: “Steven enjoyed good interaction with his father, with plenty of communication”. We’d been watching a 1993 episode of Gladiators. Lots for Steven to talk about. I can tease him about his crush on Jet. He’s made up a whole back story to the bit where Wolfman removes one of the contenders shorts whilst doing Hang Tough. He likes to discuss why Fash is wearing his blue jacket today and not his yellow one (“Got a bit of jam spilled on it”). And every order John Anderson barks out, he expects me to repeat. But the coldness and lack of detail of the report pissed me off. Even more so, was the judgement phrase “good interaction”. Petty perhaps but in that moment, we said goodbye to logs.

In the last couple of weeks, the professionals have started to wobble about the absence of logs. The social worker came to do her FACS assessment. She asked for a “quick look at the logs”. I reminded her that we didn’t keep them anymore, so she asked about “incidents” recently. I told her (truthfully) that we’ve only had 1 one “incident” of Steven hitting out in the past seven months. She asked for details and meticulously wrote down chapter and verse. I asked her why she hadn’t recorded the fact there had only been a single incident (especially considering, 3 years ao, the Unit were recording 10 per week). A couple of days after this, the support agency were inspected by the CQC. The inspector phoned me for feedback and the one thing he seemed bothered about was the lack of recording. I told him that I didn’t object to staff reporting their day, I didn’t want them to do it in my home and keep the records there – if they wanted to file a report after their shift and keep it in the agency’s office, that is fine by me. The inspector was thrown by this and we had a discussion about the use of these records and do they add anything at all to Steven’s life. The inspection (that produced a good report) has rattled the support agency and they have been putting some pressure on me to reintroduce the logs. I’m resisting. This has got through to the staff and they keep asking me when I plan to start them up again, even the direct payment worker, who has got nothing to do with the agency. But I’m going to hold firm. For a good reason.

There might actually be a link between the stopping of the logs and the fact that we’ve only had 1 “incident” in seven months – the timings fit. Just perhaps, because the staff are spending less time recording, they’ve got more time to actually engage with Steven. The other morning, I went downstairs and Steven and the support worker were at the dining table eating their Frosties and porridge. Steven was educating the support worker about the career of Aled Jones, from Walking In The Air through to Daybreak. It was a lovely moment. A few months back, that wouldn’t have happened. Steven would have been sat on the sofa eating his Frosties, whilst the support worker would have been sat at the table, writing that Steven was eating Frosties. A small moment perhaps, but it strikes me as significant.

In the process of logging reality, you end up creating a different reality. An unhealthy detatchment sets in, both in the language and in the relational. It feels much more beneficial to have Steven, I and the support staff, living a reality that we might share, rather than removing oneself from the reality to report it in a sterile fashion. It’s a weird irony, that in recording a person’s reality this way, you end up taking all the reality out of their experience. Surely it is far better to have people really engage with Steven and actively take part in his life, rather than be a bystander who observes, judges and records. I guess the social care world is slightly frightened of authentic engagement – it starts to make the learning disabled person human and that would never do.

Tell Me Why – I Don’t Like Tuesdays

Tuesdays are starting to piss me off. It shOuld be a good day. It’s my day off work. I get two hours in the morning whilst Steven is out swimming. And I get two, interrupted hours in the evening when he’s doing his music DVD session. Time to switch off and have some “me time”. Well, that’s the theory.

Yesterday, I was up until midnight trying to deal with all the bureaucratic bullshit that is part and parcel of being a carer. And that was after spending the four hours free time up to my eyeballs in the tasks.

First task was to try and sort out Steven’s council tax. Hillingdon don’t want to acknowledge that Steven is disabled and therefore qualifies for a “severe mental impairment” discount. The December payment, astonishingly was debited from my account (even though the council tax account is in Steven’s name) and was more than double what I’d been paying at the flat. I checked with them and he has to apply for this discount. The social worker has written to them, I’ve sent them the psychiatrist’s report, I’ve shown them the court judgment from 2011 but none of these things are considered suitable as evidence of disability. Stalemate.

Next job was to try and sort out a threatening letter from the tax office, informing me that I’d underpaid the support worker’s NI contributions up until October. I’m sure that I haven’t. But you try and get a full breakdown from the tax office and how they have calculated this debt – they can’t do it. So, how can I pay a bill for £265 from the direct payment account when I’m not sure what I’m being charged for. Another stalemate.

I took a short break to order Steven some new socks and try and mend the new hoover which someone has carelessly broken. Steven likes new socks for Christmas as it puts him on a par with Mr Bean.

The next big job was to complete the Court of Protection annual review form. This is the first one I’ve had to do since being appointed Steven’s property and affairs deputy. It’s a scary form because the whole tone is having to prove my suitability as a deputy. And I’ve got to write reams about how Steven’s damages have gone down in order to set him up in his new home. It’s quite tricky trying to condense all the twists and turns of Hillingdon’s machinations over the housing situation, into one half page box.

And that was my day off. Council tax, direct payments, the tax office and the office of the public guardian. All because I’m the father and carer of a disabled man. Good job I didn’t have any plans.

Chemical Dosh

Result!

I wrote to Steven’s psychiatrist ahead of yesterday’s six monthly check up, suggesting that now might be a good time to consider reducing Steven’s medication. I was extremely polite and focused on two factors: Steven’s calmness and maturity and his growing weight. I emphasised the first as I know the professionals get a bit twitchy when you suggest that medication may be linked to weight increase – they don’t like it. Steven has been on one type of tablet for seven years and the other for five years and in that time his weight has doubled! Food intake decreased and exercise increased but still his weight has doubled.

The psychiatrist agreed. We’re going to have a three month period of halving the medication and if that goes well, then we’ll look at cutting it out altogether. It would be fantastic to start the new regime tomorrow but I have to bear in mind that this is a tricky time of year for Steven. As well as the usual Christmas anxiety (“Dad – don’t forget a Shirley Bassey DVD for Christmas Day”), there is also the anniversary of Steven going away at the end of the month. This is also a tricky one for the professionals because they don’t like acknowledging that there has been any ongoing trauma caused by the year long unlawful detention. So, we get pushed in the direction of “typical autism anxiety about change” and gloss over the fact that everytime Steven goes out of the door, he seeks reassurance that he is coming back in again. This gets heightened every December and January. Therefore, I’ve decided to leave the medication adjustment to mid January. I’m confident it will be fine. I’m not entirely convinced that the medication has any impact on his mood/anxiety at all. It did to begin with but over time, Steven has become much better at managing his own anxiety.

Yesterday, I heard a story that chilled me. A colleague has an 19 year old son with autism and epilepsy. The family have been trying to get a care package arranged for him for the past 18 months but have got nowhere. A professionals’ meeting was held on Wednesday and the family were informed that because of a couple of incidents at college, they want to section the lad in a mental health assessment and treatment unit. My colleague is, of course, familiar with our story but also the horrendous death of LB at one of these places. She is terrified. Even more so because none of the professionals can give any indication of what might be achieved from this plan.

And there’s the nub. Medication. Assessment & treatment units. They’re about containment. They are warehouses. But they’re dressed up as something else. A glossy pamphlet with absolutely nothing contained within. Nobody it seems in the decision making process has the energy or inclination to consider an alternative way of dealing with the situation other than medicating and containment. I’ve written many times before on this blog – something happens to our young dudes in late teens. An overwhelming tsunami of anxiety. But how about we look at it as a developmental crisis – not a medical model. In Steven’s case, it passed. He came through it, even though it meant he spent a year away from his home and has doubled his weight.

There has to be a better way of supporting our guys through this difficult phase.