Champagne After DoLs

Dear newly appointed Category Manager Service Lead for Reablement and Outreach Services

Congratulations on your recent promotion. Golly – what an extremely long (horizontally) job title you’ve got. It’s taken nearly a whole line on my page. Never mind, I’m sure this is natural law – the more you earn; the longer your job title. Who’d have thought during all those meetings we had that year when you unlawfully deprived my son of his liberty, that three years on, you’d be in such an exalted position with no mud sticking to you whatsoever.

I read about the latest upward surge in your career path this morning and quite by chance, I happened to be in the town centre a couple of hours later and saw some of your service users availing themselves of your outreach service. I’m sure the pouring rain had a lot to do with it but what a bedraggled lot they looked. I stopped to chat as I was being waved at by one of the young guys who used to attend the same school as my son. He was in Burger King with a group of his peers and a couple of enablement champions. I guess I caught him at the wrong moment because he was getting a trifle agitated. He’d only been sitting there for two hours and in that time had positively engaged in the activity of drinking a cup of Fanta. I remember his fondness for Star wars, so we had a chat about Obi Wan Kenobi. Funnily enough, in the process, I was able to reable the champions as well, as it allowed them to fully concentrate on their game of Candy Crush.

You’d think these autistic dudes would show more gratitude wouldn’t you – the cold and the rain being a small price to pay for being able to access the council’s new non building based drop in facilities.

At least tomorrow will be different, or at least drier,as the champions are taking the group to a room in one of the local churches. I used to work there, so I know the place well. So, although there will be absolutely nothing for him to do there, at least he’ll be able to swap that horrid sugary Fanta for a nice cup of water from the cooler. A full day of outreach activities and he’ll be back home for the lunchtime edition of Loose Women.

As I left my hungry friend, I chuckled at the amusing coincidence – the charges my friend and his group are paying for their exciting outreach opportunities are probably going a good way to paying for your handsome salary. A win win for everyone.

Keep up the good work. I’m sure when my friend dries out, he’ll thank you for enabling a new phase of his independence.

Yours sincerely

Percy Nalisation

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The Annual Staff Appraisal

Well, well, well. After months of haggling and more tactical manoeuvres than the D Day landings, I have finally got the council to agree to a Personal Budget for Steven that sort of meets the two missions of my proposal. The first was to try and secure Steven’s budget for the forseeable future. I know that in the fragile world of adult social care that is impossible but it does feel like we’re on a stronger footing than we were a few weeks ago. The second mission was to try and cut out all the middle men making huge profits out of Steven’s care. That has very nearly been achieved. The support agency have gone. The cab firm will be paid cash fares from now on as opposed to their high charging account fees. The council have agreed that I don’t have to use a payroll company to manage the support workers’ wages – I can do it myself and save about £50 per month which would have gone into the payroll company’s pockets. The only agency left that will make a profit out of Steven is the company that supply the pre-paid cards that is the council’s prefered method of managing the budgets. The card company make 50p everytime a transaction takes place. I was planning on paying the support workers weekly – there are five of them – and their pay would have to go straight from the card into their bank accounts. At 50p per time that would have cost £10 per month. The council expressed their “disappointment” at having to add this fee to the budget (which is ironic as for the last few months they’ve paid thousands of £s to the profits of the support agency). They wanted me to pay the staff monthly and they would include £2.50 in Steven’s personal budget to cover this. So, what I’ll do is transfer one lump sum once a month from the card into an account I’ll set up just for the wages, and then pay the workers directly from that account. Only one transaction from the card means the perpaid card company makes a profit of …… 50p per month. I’m a stubborn old bastard when it comes to issues like this. But it feels good that in a space of a few weeks, we’ve gone from the prospect of Steven’s package being slashed because the costs were too great, to the new position where only 50p goes to the vultures.

Now that’s sorted, I’ve got to turn my attention to being an employer. So, over the next few days I’ve got to draw up contracts of employment, job descriptions, set up the tax accounts etc, bloody etc. There are other things too. When they were trying to dissuade me from taking this on, the support planner remarked that I’d have to cover all sorts of other things like training, supervision, annual appraisals.

Annual appraisals? I’ve been working on this already and my plan is quite simple. I’m not too fussed if the workers aren’t totally up to speed on manual handling techniques, so I’ll set them an annual test on how well they understand Steven and have engaged in his world. Steven knows all the answers, so he will be head of marking. Anyone who gets more than 50% from their examination gets a Steven selected bonus (probably a bag of Frazzles) and those who get less than 50% will move into Benefits Street. Fair enough, I think.

Here are the questions for the first appraisal:

Q1: What colour hats did The Rubettes wear for Sugar Baby Love?
Q2: What did Basil Fawlty serve his dead guest for breakfast?
Q3: Who does Steven think that Chris (one of the support workers) looks like in Abba? (A clue – it’s not Anna Frid, although Chris does look fetching in an A line frock)
Q4: Whose concert was Mark Neary at in 1979, when he was thrown into his chair by one of the bouncers?
Q5: What is Mr Murphy’s profession in Camberwick Green?
Q6: What was Norman Cook eating in the video to Me and the Farmer?
Q7: What cheese snack did Tony try to tempt Debbie with in Men Behaving Badly?
Q8: What animal did Paul Heaton ride in Good As Gold?
Q9: What were then names of Mr Bean’s two New Year’s Eve guests?
Q10: What fate befell Steven when he was walking to the Pizza Hut in the summer of 1995?
Q11: How many nipples does Madonna Have? (Steven’s answer may surprise you)?
Q12: What were Fred Elliott’s dying words in Coronation Street?
Q13: What does Steven serenade Dave with everytime he sees him at the Mencap Pool?
Q14: What song were Take That performing the night Steven made his escape from the Positive behaviour unit?
Q15: What station did Brenda Nicholson get off at, the day in 1997 when she saw Steven Neary eating some Jellytots?
Q16: What did Auntie Rose say to Steven when he declined her offer of a Penguin biscuit?
Q17: How many men in Cowley look like Boy George (from his Karma Chameleon days)?
Q18: Can you tell which of the Proclaimers is Craig and which is Charlie?
Q19: What do you say when someone farts in the kitchen (but not in any other room of the house)?
Q20: What did Robbie Williams say when introducing Meat Loaf on the 1993 Christmas edition of Top of the Pops?

That should do it. That should sort the men from the boys.

P.S. I’m not going to post the answers just yet. You never know, a support worker may be lurking and I don’t want to give them a heads up.

P.P.S. Steven has just taken the examination himself and got 100%. He’s set a very high benchmark for all that follow.

P.P.P.S I might just get to like being an employer.

The Personalisation Tidal Wave

I’ve reached the end of my Personalisation line. I’m going to try and erase from the dictionary inside my head all those buzzy words like: personalisation, in control, inclusion, person centred plans, the choice agenda. In their own way, they are very laudable but I just can’t reconcile the jazzy brochures I read on the subject with my experience and the many stories I read in the various carers groups I belong to. There seems to be a chasm between the pictures of the young woman with downs syndrome at the ice skating rink and the stories I hear of people who don’t even get out of the starting blocks when it comes to individual care plans and personal budgets. I cannot bear to read any more stuff from “The Tidal wave Towards Inclusion” group when I know that thousands of people are scrambling around for small crumbs. Less of a tidal wave – more a small dribble of piss. I do not understand how some people can talk about using their personal budget to fund adventure breaks in Iceland whilst the majority cannot get the funds to enable them to be supported going to Iceland to buy a black forest gateau.

If you need care, the way I see it is that there are four options open to you. Steven’s care plan is pretty straight forward – he needs 2:1 support when he is out and about; he needs 1:1 support in the home and he needs specialist transport to get him out and about. He’s not fussed about adventures in Iceland – he is more than happy going swimming and going to the gym. That shouldn’t be too difficult surely. This is what I see the four options available to him (and me as his carer):

Option One:
Go for a full personal budget and organise the whole shebang yourself. That sounds very liberating and few people could argue with that from an “in control” perspective. The main drawback with that option is that in order to have support to go swimming, you suddenly find yourself becoming an employer. That opens up a world of tax returns, employment contract law; recruitment procedures; arranging training and supervision. Tasks that take up valuable time. In my average week, I get 2 hours on a Tuesday morning and 1 1/2 hours on a Friday evening when I’m neither caring or working. Most Friday evenings are now taken up with tasks pertaining to being an employer.

And what happens if you don’t have anyone to organise being an employer for you? Then quite simply, you cannot avail yourself of personalisation. There is nobody around to take on the jobs expected of you when you are awarded your personal budget. Option One disappears.

Option Two:
You give up on the idea of managing things yourself and throw the whole lot over to commissioned services. You are spared the hassle of being an employer but you are also spared any semblance of choice as well. And the, as I’ve recently found out, you discover that the agencies commissioned to support your son swimming, charge such astronomical fees, the budget is always fragile because commissioners will inform you that such high cost support is unsustainable. They won’t tackle the providers – you become the problem for having such high cost needs. I’ve been very caught up in the moral and ethical side of commissioned services. It really sticks in my throat that so many people are making so much money out of Steven’s disability. But if you can park your morals, then Option Two may seem a better option.

Option Three:
Give up work and do the whole care yourself. Try and get by on the state Carers Allowance and don’t bother social care for support. I guess they’d like that. It might even be termed “personalisation” but it’s not really a winner in the long term.

Option Four:
Put the person you care for into a home and avoid the whole issue of Personalisation. I’ve never read a single story about a person in a home receiving a personal budget and having the freedom to decide how to use it. In a care home, it seems to me, you are reliant on the staff employed by the home to provide your life inside and outside of the home. I remember a story from Steven’s time in the Unit. Our local swimming pool reopened after a seven year closure. It was a big event with both an indoor and outdoor pool. Steven still had his own support workers at the time, so off they went and Steven was able to fully engage with everything the pool had to offer. Another resident wanted to go but had to wait until there were sufficient people on shift to facilitate this. And when he went, he wasn’t allowed to swim – he went “to look” – an observer of other people living their lives. Not very stimulating perhaps but it gets you out of the employer/ moral dilemma situation.

I’d really like there to be a fifth option. One that could open the doors to people needing care and their carers. One that respected the tough job carers have and not expect them to take on board yet more arduous tasks.

If I want to go the gym, I can just pack my kit in my bag, fill up my protein shaker and poodle off down the road. If Steven wants to go to the gym, I have to become an employer or pay a company £16.85 an hour to take him there. If any of the personalisation experts reading this know how Steven can get to the gym in pretty much the same fashion that I would go there, please let me know…..

Where Personalisation Fails (Part 73)

Yesterday, I nearly did a complete u turn in my “Push for Personalisation”. Since we moved last November, I’ve put an incredible amount of energy into trying to secure Steven’s support package so that it is the very essence of what Personalisation is meant to be about. Being in control. Tick. Choice. Tick. It’s still a long way from being realised and yesterday I got to the point of asking – “what’s the bloody point?” Will it make Steven’s life better? Not really – his life is pretty good already – this personalisation plan is more about clinging on to something that already exists as its foundations are very fragile. Will it make my life any easier? No – quite the opposite. It will involve far more time and energy from me. It’s about two things really. One – a possible futile attempt to secure Steven’s present and future in the face of constantly changing processes and cuts. Two – it’s an ideological drive on my part. Cut out the middle men making huge profits off the back of Steven. This is also showing up as futile as well – I’ve got rid of two middle men, only for two more to instantly step into their shoes. This is Planet Social Care – there will always be people in for the fast buck.

I received a letter from HMRC yesterday – a penalty notice for “not submitting a fully completed return” last year. £800 fine. First I’d heard of it. It’s far too complicated and boring to go into all the details but last year I collected a long paper trail of correspondence and phone calls trying to get the necessary forms the HMRC require. It was impossible. In the ned, I submitted the P35 and sheets of all the detail that would have gone on a P14 if HMRC had supplied them. I spoke to a woman on the phone yesterday and she acknowledged that I had submitted all the information they need but not in the correct format. My only option now is to appeal the penalty and that will stop more accruing and she will send me all the forms out and we’ll have to start all over again. How I find the £800 is anyone’s guess. The direct payment account won’t cover it. I certainly don’t have the personal funds to repay it.

Let’s just remind ourselves why I have to manage a payroll and received direct payments. It’s so Steven can go to the gym and swimming. It’s so Steven is supported at home whilst I’m at work. It’s so I can have four hours off from caring every other Monday. To achieve that fairly simple level of “personalisation” is fraught with obstacles and needs triathlon type energy resources.

I get sort of two hours free on a Saturday evening. I say “sort of” because Steven does a two hour music dvd session and he often needs help cueing up the tracks – “Dad – want Kid Creole, singing Annie I’m Not Your daddy?” “It’s on the blue one Steve – press ‘down’ nine times and then press ‘enter'”. I had plans for my two hours last night. Not big plans. I was going to rewatch Field of Dreams – my favourite film. I’ve been flagging with all the effort of securing the personal budget and needed the uplift of hearing Shoeless Joe say “If you build it, he will come”. I had to forget all that and concentrate on the appeal letter instead.

I’m not ashamed to say that I cried. Tears of frustration. Tears of entrapment. Another precious two hours wasted having to try and secure an illusion. The illusion of Personalisation.