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The Drugs Don’t Work

It’s a big week. The final week of Steven’s medication reduction. Next Wednesday he’ll be off the anti-psychotics completely.

He was first given them towards the end of 2007. He was on 2mg a day at the time. When he went into the Unit, they doubled the dose to 4mg within the first two weeks of him being there. He’s been on the same dose ever since. Since 2007, his weight has doubled and as I wrote about recently, it has started to seriously affect his health.

Thank goodness the psychiatrist has taken the issue seriously and has been fully on board in reducing them. We’ve been reducing them by .5mg a day since the visit to the clinic and getting the diagnosis. Today, Steven didn’t have any meds this morning and will have .5mg tonight. One more week and they’ll be out of his life.

Already, we are noticing a big change. It’s difficult for me to see because I’m with him every day, but people keep telling me that the weight is falling off him. When he came into my bedroom this morning to talk about Mr Bean, it was striking how much his puffy face has gone down. I ordered Steven some new summer pyjamas last night but they may be too loose in a few weeks time.

And he’s so full of beans. Steven is like Tigger at the best of times. At the moment, he’s like Tigger on steroids and whizz. Everything seems maximised. His usual excitement about life is on full volume. There’s been a couple of meltdowns and they have the volume turned up as well. It’s like a switch has been flicked and the whole Steven is returning.

Steven is downstairs at the moment having his usual Wednesday disco session with Alan. A couple of months ago, Steven would manfully try to dance but have to sit down after two songs. They’ve been going full pelt for over half an hour now. I’ve put on some of the fastest songs – Sylvester doing “You Make Me feel Mighty Real” and The Cartoons doing “Doodah” but he’s up for it.

On another day, I’ll reflect on what the hell the last five years have been all about. A developmental crisis about leaving school has led to over six years of sedation, a year in an assessment and treatment unit and huge weight gain. The overkill could have killed him.

Carespeak & Care Plans

Sorry – I’m back on Carespeak again.

Yesterday, I posted a section from Steven’s final care plan. Although there is nothing particularly wrong with it, reading it back makes me cry. I find it so sad that a vibrant young man’s life can be distilled into 12 sheets of paper, with no room for any aspiration or uniqueness at all.

Here is the final paragraph again – “Outcomes”

1. To maintain physical health and well being and appropriate levels of hygiene.

2. Continued 2-1 support with day to day activities and accessing the community (via direct payments on the prepaid card). To be able to access resources in the community safely and to maintain personal safety and wellbeing. To have meaningful participation in activities that aid development and reflect Steven’s personal choice.

“Outcomes” is a funny word. I’m pretty sure that Steven doesn’t think of his life and what he does in terms of outcomes. It’s not a concept that I apply to my life either. Does anybody get up in the morning and think about their outcomes for the day?

There are a couple of points about the language of the whole 12 pages that really strike me. Firstly, there is a total assumption that the reader will understand all the jargon contained within it. There is no attempt to pass the report through the Plain English machine before posting. Back foot time. You have to keep asking what certain words mean and that creates a weird tension. Secondly, the plan reveals a whole set of attitudes that the professionals have about the learning disabled and it’s not very encouraging. It’s like the person becomes a non human exhibit – a project to be experimented on.

So what of some of the key words of the above paragraph? I wish they would drop this “accessing the community” stuff. Steven is the community. “Accessing” it means that he is on the outside of it, waiting to be given admittance. That reveals a strong attitude – “this is ours and you are not part of it unless we allow you to be”. And he can access “resources”. Does he? I think he goes to the gym and goes swimming and has a marvellous music session at the Arts Centre. Does calling these things “resources” make them sound more important? Does it make it sound like the LA have some sort of stake in them – like they’ve provided these resources? Everything Steven does has nothing to do with “service provision”.

What is with the stress on “hygiene”? It seems such an odd thing to have as number one “outcome”. Has Steven ever presented as being unhygienic? Yes, he might struggle is he was left completely to his own devices but why does it merit such emphasis as to appear as number one?

“Safety” and “safely” in the same sentence shows that Hillingdon haven’t let go of that picture they built of Steven back in 2010. Whilst you can’t argue with a desire to keep a vulnerable person safe, I don’t think that was why it warranted two mentions here. It was a harkback to their reports of 2010 for court and their “belief” that Steven could be dangerous. It doesn’t matter at all that there has been no incidents of aggressive behaviour since Steven left the Unit. Unfair and unworthy.

Finally, there is the usual stress that anything Steven does must be “meaningful”. Steven’s life does give him meaning but I don’t think it’s the same sort of meaning that the social care world has in mind. We’ve been to the Mencap Pool today. That means a lot to Steven – the place is full of love. And love makes it safe. But I don’t think the lA had love in mind when they’re talking about things being meaningful. Of course, in that word, we also see revealed that someone is judging what is meaningful and what’s not. Applying a set of values that may have nothing to do with Steven’s values.

“Meaningful” is linked in with “development”. That cranks up the pressure slightly. Not only must what he does be meaningful but it must also develop him as well. Steven reminded me last night whilst watching Toy Story that Woody taught him how to change batteries. That wouldn’t go on a care plan. It’s all about measurement. Everything Steven does has to be measurable in terms of his development. What a way to live a life.

And there we have it. That is Steven’s care plan. Nothing about love. Nothing about fun. Nothing about aspiration. Nothing about relatedness. Nothing about being human. I guess the RAS couldn’t handle ideas like these.

Bun Fight at the Personal Budget Corral

I’m two weeks into the Personal Budget universe now. Admittedly, I’d spent hours (days?) in the weeks beforehand calculating all the figures. But I have to say, it has not been arduous at all.

Last week, it took me 40 minutes to pay five lots of wages, transfer money to pay the cab fares and allocate the funds for the monthly tax bill. It probably took me that time because (a) I have never done online banking before, and (b) I was having to set all the support workers’ bank details up for the first time. Today it took ten minutes!

And I want it to stay this way. The beauty for me is that I can do the wages in the small chunks of free time I get. Today, Steven and his support worker were watching the horse racing (Steven likes counting how many jockeys have red hats on), so I thought, as I had half an hour before starting tea, I’d get cracking on the wages. So, the support workers will get paid a day early – who gives a monkeys. It was convenient for me.

So, why am I standing by for a bollocking? Well – I was notified the other day that at the end of May I have to attend the 6 week review of the personal budget. Attending will be the social worker, the support planner, and my favourite person, the direct payments manager. I’ve asked if Uncle Tom Cobbley can come as well. They will draw up an agenda.

I can guess what will be on it.

1) Why am I disobeying orders and transferring the money from the prepaid card into the direct payment bank account and paying the workers and the cab firm from there? I’ve only done one transfer so far at a cost of 50p. But the main reason again is convenience for me. I may have weeks where, at my only free time, I don’t have internet access and have to do the wages by telephone transfer. Also, it takes up to four days for the money to get from the card into a bank account. There may be some weeks where I am pushed for time and I don’t want to pay the support workers late because of that. It takes two hours to get the money from my account into the support workers’ accounts as opposed to four days via the card. It’s a no brainer to me.

2) Why am I refusing to submit the support workers’ personal bank account statements along with all the other paperwork Hillingdon expect from me? Well, for starters, it’s none of their damn business. I checked with the information commission who agreed that it was “excessive”. When I set up the bank transfers, the records show the worker’s initials, their NI number and the pay period. Their full names, dates of birth and addresses will be on their contracts, which the council also insist is their right to “examine”. What more do they want?

I’ve reread the personal budget several times (and got a few other people to read it too) and there is no mention that the only way to pay people is directly from the card. There is also no mention that the workers personal bank statements must be submitted for scrutiny. But when Hillingdon say something is their “prefered” way, woe betide you, if you have another preference. I learned that lesson back in 2010.

Let’s wait for May. I’ll stick to my guns which may set about a collision course. I’m not sure whether the entire FACS assessment is reviewed at this stage as well. The support plan lists the two most important outcomes to be achieved by the personal budget as:

1. To maintain physical health and well being and appropriate levels of hygiene.

2. Continued 2-1 support with day to day activities and accessing the community (via direct payments on the prepaid card). To be able to access resources in the community safely and to maintain personal safety and wellbeing. To have meaningful participation in activities that aid development and reflect Steven’s personal choice.

Not a lot to it, is there? Certainly no scope for snow boarding in the Alps.

Whatever Happened to Bruce Foxton?

I wish I’d been in the car to swimming yesterday. We’re in the second week of the new contract with the new cab company and I have to say, I’m really impressed. All the drivers are going out of their way to click with Steven. None more so than Mack, yesterday’s driver.

Despite his love of music, Steven doesn’t normally like music in a car and will ask the driver to turn the radio off. However, yesterday as he sat down, “Speak Like A Child” was playing.

“Mack – it was Style Council’s first song of Speak Like A Child”.

Mack, who obviously knows his stuff replied:

“You know Paul Weller then Steve?”

“Yes. The Jam are all gone. We’ve got the Style Council now”.

They sang for a bit and then Mack said:

“So The Jam have all gone then Steve. I wonder whatever happened to Bruce Foxton?”

“Bruce Foxton’s gone to a new work in a pub. And Rick Buckler’s a lollipop man now”.

Which may, of course, be true……

Systems & Carers

Three short stories today about systems. To me, the stories are linked by an inflexibility that may serve the system but leaves the person caught in the system despairing. Dealing with systems takes an awful lot of time and energy. But I’ve realized as I try and extract myself from the many systems that I’m trapped in, that removing oneself from the system takes just as much time and energy, if not more. The systems don’t want to let go of you – you validate its existence and provide fuel for its upkeep.

Firstly, I finally got paid for the Birmingham conference. Not by Birmingham university that ran the conference. They are still holding out for me to prove who I am before they release a payment. And in the process they’ve lost my birth certificate. Very kindly, the woman who booked me, paid me from her own company and she’ll chase up the Uni to reimburse her. And I’m still waiting for the full payment for the Halifax conference. Perhaps I’m being unreasonable – I keep hearing that it’s important to have the carers’ voice at these events but it sounds like platitudes when there is little recognition of the needs of the carer – in this case, the financial realities of carers.

Secondly, Steven went with his support workers three weeks ago for his latest psychiatrist’s appointment. This was arranged following my letter requesting a review of the medication, in the light of the diagnosis of Steven’s liver problems. She was very supportive and agreed to a reduction programme and would write to the GP with a timetable. Not to me, even though I’m the person administering the meds. The surgery told me that they can’t discuss the matter with me as Steven is an adult. I wrote to the GP last week, pointing out that if I’m kept in the dark about the plan, the reduction programme is unlikely to get off the ground. Eventually they agreed to give me a copy of the fax the psychiatrist sent them. It can’t be emailed or sent through the post – I have to collect it tonight during my respite evening out. “Oh – and can you bring proof of your identity with you”. We’ll forget the fact that I’ve been with the surgery 20 years.

Finally, the personal budget saga. I’m sticking to my guns because my preferred way of managing the budget works best for me. It will piss Hillingdon off because my way doesn’t fit in with their distrusting, 24 hour surveillance system of running a personalisation scheme. But what the heck! Yesterday, I had an unexpected free hour, so I thought I’d see how long it takes to set up individual payments from my direct payment bank account to the support workers’ accounts. And at the same time, I could set up the ” real time” tax payments as well. Admittedly, I’d worked out all the figures beforehand but it took me just over half an hour – 5 transfers to each of the support workers; a transfer to my account to cover the cab fares and an HMRC payment. I felt quite chuffed and reassured that it will only get quicker in the future. And the prepaid card company only made 50p out of Steven, rather than the £3.50 if I’d done each transaction, the Hillingdon way, directly from the card. Hillingdon don’t like it because I’m bucking their system for auditing what I’m doing. They don’t get that a carer’s life is full of snatched hours like these.

I realized after that awful telephone lecture from the direct payments manager the other day that on one level, she was talking to me like I was a member of staff (on another level, she was talking to me like I was a rancid turd). And that gives the game away. For their “let’s outsource everything” systems to work, they can’t let go. personalization, I think they see as just another outsourced service – in this instance, outsourced to a parent or carer. So, the carer running the budget is seen as an employee, albeit, an absolute nuisance employee.

What I feel all three stories have in common is that none of these systems acknowledge or respect the realities of life as a carer. Two things that bind most carers I know are a dire shortage of time and low incomes. It doesn’t matter if you, the carer, think that personalization is the best thing since sliced bread. It demands a lot of your time, just for it to work on even the most basic level. Most carers that I know don’t have that time, nor the energy, to engage with personalization, even if it could have a beneficial effect on the person they’re caring for. For personalization to work, the carers have to be on board – it can’t work without them. And the professional agencies should be doing everything they can to make the carers’ role in this as easy as possible. By the way, I’m saving for another post the question of how personalization can possibly work for someone who doesn’t have a carer. I’m not convinced that personalization even reaches those people in care homes who haven’t got anyone to take on this massive workload for them. Sadly, far from trying to make personalization easier for the carer, my experience reveals the opposite. Additional hurdles are placed in your way, simply because you are a carer. Over the last few weeks, I’ve spoken to five different professionals involved in Steven’s budget but none of them have told me basic, really useful information. Like, it takes three working days from a payment off the prepaid card arriving in the recipients account.

Yesterday, one of the Get Steven Home group suggested that the time I spend on the payroll is “chargeable services”. Hillingdon would fall about laughing at that suggestion. They are willing to outsource to a private company who will charge you for managing your payroll. They are willing to let a card company make money out of ” providing an intervention service”. They are willing to commission care agencies that make 100% profits out of care packages. But a carer is expected to take on a huge burden of work for free – out of love.

I wonder whether the big Carers charities would be interested in taking up the reins on this one. After all, we’re coming up for National Carers week. Oh no, silly me. Most of them are in it too – reliant on the big systems for substantial parts of their funding.

A Personalisation Dusk

I can’t believe I’m writing this post less than 24 hours after the “A Personalisation Dawn” post. I just want to scream. AAAAAAAAAAAAAAAAAAAGGGGGGGGGGGGGGGGHHHHH.

Yesterday, the council loaded the personal budget onto the prepaid card. They have a really weird system where 25% of the annual personal budget is paid in the first month and all subsequent 11 payments are for a lesser amount than a normal four weekly figure.

I transferred a large sum of money from the prepaid card into the old direct payment bank account to cover: 1) the support workers’ wages for this week, 2)the cab fares for this week and the next four weeks, 3) the support workers wages for the next month that I will be paying on a weekly basis. My plan was to transfer this week’s wages from the DP account into the workers’ accounts on Friday afternoon. And then do the same for the next four weeks. I get 1 1/2 hours free time on Friday whilst Steven is at the Mencap pool, so this seemed to be a good time to get the job done.

This afternoon I received a phone call from Hillingdon’s Direct Payments manager. It was not pleasant. I felt like a naughty schoolboy. She had checked the account (after one day!!) and noticed that I was conducting the prepaid card not in accordance with Hillingdon’s policy. It is against the policy to transfer wages into an account and pay them from there. All support workers wages must be paid straight from the card into their bank accounts. At 50p a transaction. I was to transfer the money straight back onto the card. The council cannot audit or monitor the prepaid card any other way.

I tried immediately to transfer the money back onto the card and then learned something else that nobody had bothered to tell me. Monies transferred from the card into an account take three days to get there. So, by using Hillingdon’s system, I won’t be able to pay the support workers on Friday as they are expecting. She phoned me at 3.55 and a transaction has to be done by 4pm for that day to count in the “three working days” timescale.

In the last month, I’ve met or spoken to the social worker, the support planner, the direct payments officer, someone from the local disability charity who the council commission to “provide personal budget support”, the fairer charging officer and an agent from the prepaid card company. Not one of them told me that I couldn’t transfer the funds into the DP bank account. Not one of them told me that the funds take three working days to clear. Six fucking people and I’m doing their job for them. All they have to do now is monitor, audit and provide non-existent support.

I checked the personal budget contract that I’ve just signed. Nowhere does it mention that the wages have to be paid direct from the card. It mentions that Hillingdon’s prefered option of payment is using the prepaid card but nothing else. So surely if it suited me better, we could forget all about the card and they pay me as they have done for the last seven years. I could do the wages at a time that suited me. I could foster the good relationship I have with the support workers by paying them on time and when they do an urgent shift I can pay them immediately. And I can save quite a bit of money on the charge the card company levy for each transaction.

Another thing the direct payment officer said that worried me because it seems a real breach of data protection to me. She said that she would regularly ask to see the support workers’ bank statements to make sure that their account details match the ones showing up on the card account. Is that okay? I’m their employer – not the council. Is it right to ask my staff to handover their bank statements, which of course will have lots of other private transactions on them. I can’t believe they’re allowed to do that.

Of course this is all about trust and control. I’d hate to work in an environment where the culture was so distrustful and controlling. All those people who’ve been involved so far have nothing to do anymore – I’ve taken the whole load off their hands. Their sole role is to monitor, audit and bully. It’s very unpleasant.

I’ve written to all the people who’ve had their finger in Steven’s pie. I didn’t know who should be the main person I address it to because nobody seems responsible. That’s another thing about all this and must be the shadow side of social care emerging again – nobody is accountable so they make the carer overly accountable. For things the carer couldn’t possibly know unless one of the professionals tells them. And if the carer does something they don’t like, insidious little threats creep into the game.

I don’t think anything Hillingdon are doing is about Personalisation. It’s their way of cutting support packages whilst maintaining and growing the massive internal and external industry that has prospered out of the personalisation agenda.

It really does stink.

A Personalisation Dawn

It’s D Day. Day one of our great Personalisation adventure. Today is the start of Steven receiving a personal budget to meet his care needs. I arranged for a lone piper to play Colonel Bogey outside my window this morning to herald this new dawn but he got held up on the Piccadilly Line.

It all started back in November when Steven had his Fairer Access to Care Services assessment and I was told that his budget would have to be cut as it was too expensive. After a bit of digging, I stumbled across the shocking fact that the agencies commissioned to provide the services were making a 54% profit out of Steven’s care. They were trousering over half the money the council were allocating for Steven. But under the Fairer scheme, it was seen as okay for Steven to have a huge cut in his budget whilst the providers continue to take their cut. Welcome to the world of adult social care 2014.

I put a proposal together where I managed the whole budget, cutting out both the support agency and the cab firm. I would pay the support workers direct, which was a real winner for them as I could pay them an extra £2 an hour more than the agency paid them. Same with the cab firm – I could pay the drivers a cash fare and do away with hefty account charges.

After much toing and froing, the council agreed. I saved them a third of what they had previously been paying out. And I saved Steven losing out of any of his activities or support workers. BUt almost immediately, another set of middle men came into the picture, wanting their cut of Steven’s money. The council load their personal budgets onto prepaid cards and everytime the card is used, the card company take a cut. The council also expected me to use a payroll company to administer the wages and surprise, surprise, they also take a slice of the budget as well. When councils made the decision to outsource practically all its functions, it left the door open for the vultures to see a rich feed from our disabled dudes.

I’m a stubborn bastard and having got rid of one lot of middle men, I couldn’t entertain a new lot moving in. I said that I would manage the payroll myself. And to stop the card company creaming, I’d make one transfer a month from the card into the old direct payment account and pay all the wages and cab fares from there. The card company make a profit out of that of …… 50p per month. I can live with 50p a month.

Over the past few weeks, I’ve written employment contracts, negotiated salaries, haggled over the cost of the cab fares (The old cab firm stuck rigidly to their figures, so it has meant we start with a new cab firm today), designed time sheets and payslips, set up tax accounts on the HMRC website, wrestled with the issue of employers national insurance contributions, planned supervision and training for the support workers, sat passively through a fairer charging policy assessment and had more meetings with interested parties than you can imagine.

I’ve been trumpeted by the personalisation Evangelists but it doesn’t feel like a success at all. It feels like bloody hard work – partly through my own obstinacy but mostly through the incredible bureaucratic systems that don’t feel the slightest bit helpful.

In one fell swoop. I’ve gone from being a Dad and a carer to an employer of five staff, and all that entails. I can see why personalisation fails – it is too complicated, too hard work, too time consuming.

And let’s remember what this is all about. I have become a major employer so that Steven can go to the gym and the swimming baths and have support for times when I’m at work.

So he can have a life basically.


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