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The Personal Budget Review

May 27, 2014

This morning we had the review of the Personal Budget – 8 weeks post implementation. I can’t say that anything especially bad happened. It was the usual stuff of extraordinary controlling behaviour and total lack of understanding of the life of the person receiving the budget or of the person they’re expecting to manage the budget. I wrote some headlines about the meeting on the Get Steven Home facebook group and someone commented they felt really “despondent” after reading it. Spot on word. Since getting home this morning, I’ve felt very flat, very tired and very sad. All the symptoms of despondency I guess.

I suppose if you live round here, personal budgets can work but it relies on you being able to do two things: (1) you have to accept that the whole system is based on distrust, and (b) you have to accept that the main selling points of personalisation, i.e. choice and flexibility, are an illusion.

I can see that personal budgets are completely inaccessible for people without a carer. I can see that personal budgets are completely inaccessible if you want to have some control over how you live your life and use your budget. I can see why many people chose not to avail themself of a personal budget – the distrust you encounter and the sheer volume of work generated by them is probably not worth the effort. For a personal budget to work you have to accept that you have no control over the allocation or the expenditure of the PB and that you will be agreeing to a level of surveillance not seen since 1984.

I arrive for the meeting with all the records I’ve kept over the past eight weeks – bank statements, pay slips, tax records, contracts, the log book for the taxi cabs, time sheets. The recurring theme throughout the meeting was: “but how do we know you’ve done what it says here?” The bank statements show the amount, date of payment, name of worker and their national insurance number – The council wanted proof that the money actually went into their accounts – “The money could have gone anywhere from your account”. The same with the pay slips – “How do we know that this money was paid to them?” What can you say to that? What am I doing with the money if I’m not using it to pay the support workers? Do they really think I’ve invented five imaginary support workers and am funding a jet set lifestyle out of the PB?

The log book for the cab fares wasn’t good enough, even though it was their idea originally. Same old, same old again. The log book shows the journey, the fare and the signature of the cab driver to show he received the fare. Once again, the refrain was “but how does this prove the money actually went to the cab firm?” They now want the cab firm to issue an invoice, which I think takes us into contract territory, for which there will be a charge.

They weren’t happy about me doing one off payments to the workers. I pay them on a Monday for the work they did the previous week. I normally set up the online banking payments at the end of the week and put a payment date of the following Monday. It takes me about half an hour. Last week, one of the workers had to take a day off suddenly, so I had to ask one of the other workers to cover his shift. Because I’d already set the payment up for that week, I did a one off payment, also paid on Monday to cover the additional shift. I was told that is against the “rules” – if I miss a pay run, then it will have to wait for the next one. So, the guy would have had to wait two weeks for a shift that he agreed to do at short notice. It seemed so petty and absolute nonsense but epitomised the incredible control the council still want to have.

I’d done the same thing three weeks earlier and that led us into another discussion where I’d broken “the rules”. The only downside of Steven coming off the medication is that he is sleeping less and we had three nights running where we got about 4 hours sleep (over the three nights). I was flat out, so tired that I could barely string a coherent thought together. I booked myself into an airport hotel (I had to reassure the council that I didn’t use the budget to pay for the hotel). Because I’d already used my respite allocation for the month, I shaved three hours off the normal weekly support hours to pay for a worker to do an overnight. That is not allowed. Respite allocation is for respite only. Normal weekly support hours is for normal weekly support. I can’t make a best interests decision and move funds around in the one off interest of Steven’s care needs.

That upped the control levels a bit higher. They now want to see the time sheets monthly. They will scrutinise them to see that the hours the workers sign for match the hours I specify on the payslips (which I’ll also have to submit monthly). They then want to see the bank statements monthly, so they can match the time sheets and the pay slips with the bank statements. There is a big irony here – not so long ago, the council would be doing all this work themselves but now they’ve shipped it out to their punters by expecting them to manage a personal budget, they can’t let go. Our council taxes are paying for this massive amount of surveillance.

I don’t see any choice. I don’t see any flexibility. I don’t see anything person centred about all this. It’s just a stinking cesspit of distrust and control. Someone said to me earlier that this is all projection on the council’s part and I’m sure they’re right. The personalisation scheme is run on a total lack of integrity, but rather than own that, it gets projected onto the poor service user and the person managing the budget for them.

Next month, I’m speaking about personalisation at a conference. I wish I had the balls to finish today’s meeting with: “Thank you so much for giving me so much material to use in my talk”.

Where do I go from here? I have to do it in a way that works for me as I’m the person who has suddenly been landed with all this extra responsibility. And I’ll do it in a way that works for Steven. And works for the support staff. And if that isn’t good enough, or I continue to break the rules, so be it. We can always go back to the old way of managing the care package – I might get a few hours back each week to do something more interesting and less stressful. It does strike me as so sad that the stress isn’t managing the budget – that’s a piece of piss. No, once again, the huge stress is the attitude and behaviour of the people who are meant to be facilitating personalisation.

Update (28th May)

This is last night’s dream. I was with a group of people, visiting a place rather like Kew Gardens. The Guide took us to a hothouse. We were not allowed to go inside as he said it was quite dangerous but we could view the action from outside. There were a number of triffid like creatures inside the hothouse. The Guide asked for a volunteer to go inside the hothouse for a demonstration of how the plants reproduce. A young lad in a wheelchair put his hand up. He was taken inside and left close to one of the larger plants. Suddenly the plant turned round to reveal it had a large sprinkler type attachment halfway up its body. The sprinkler started to spray heaps of shit all over the lad in the wheelchair. When the plant had finished the lad was wheeled out to clean up. The rest of us continued to watch from the outside and the plant started to grow and also, little pods sprung from it and formed into baby triffids. The Guide explained that to grow and reproduce, the plant needed to shit and spread its shit.

I love my dream world.

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From → Social Care

11 Comments
  1. anonymouse permalink

    Its the quango…. SAFEGUARDING…. generates jobs….gives them power to humiliate us, not to respect us, failure to see how amazing we are, no credit to us just humiliation.

  2. simone permalink

    It seems to me in the 21st century the only jobs that are created and survive are ones that are to do with severelence, control and paperwork. Gone are the days that jobs deliver on supporting us to have lives, have meaningful experiences and feel we are part of the community etc. I see it everywhere. On two occasions when it was quiet in a leisure centre and supermarket, the customer assistant somehow gets really uptight about something – the wrong bit of paper surrounding proof of benefit claiming – the poor woman must have brought a file of paper. In a supermarket I could see (without my glasses) on that a couple of blokes were over 18 years of age – but she was examining their ID for about 10 minutes. It was then my turn – everything stopped because I had 2 packets of aspirin and lemon sip….

    inclusive captailism on Newsnight – inclusive special schools – can it ever be!

  3. Shirley Buckley permalink

    Mark God inHeaven help us all. Where do you go????

  4. Weary Mother permalink

    Mark, If ever a LA was saying ‘dont mess with us”, surely Hillingdon is? Pay back time?

    Absolutely inhuman. Perhaps if they were to come and stay with you and Steven for a couple of days they just might get the picture…but perhaps not.

    Your 107 days are so moving. Only someone who has had to fight in the hail and storm of such disrespect and opposition, and at the same time see their son/daughter so hurt and so vulnerable and so frightened, can connect with how much it must cost you to revisit this. I was a hollowed out shell, and whimpering with anger and exhaustion when I went to the ‘independent panel’, it had taken so long and taken so much just to be heard, and then even more torture to appeal to the Ombudsman, Reliving and writing down again and again, the abused nerve end feelings of failure (to protect my son despite all I was) was like hitting each memory bruise with a hammer.

    You are a very courageous man,

    You know what I mean.

  5. Shirley Buckley permalink

    Mark Ivejust taken a step back, read your blogs again, and what? I am having to expend all my energy on not cracking up. There is nothing else to do. You won in Court and as weary mother wrote pay back time. No one can even wobble the SS’s powers. Martin has been deprived of his liberty for seven years now, the LA know this and that it is illegal (more than illegal, because to be illegal there has to be something legal, which there isn’t) He has been annihilated by them.

  6. Amanda permalink

    I had a small direct payment for my son – monitoring was quarterly and could be done by post or email – sounds like they are really piling it on and being vindictive. After the first quarter of monitoring they just asked to see the bank statements (annotated so show the expenditure) but told me to keep the receipts and time sheets just in case just in case they needed to see them…what are they doing with you? Sounds horrendous.

  7. Sally permalink

    This does sound vindictive in the extreme, with a great deal of goal post moving. It should be clearly and simply agreed on before the system starts up, what the different categories are, what’s the criteria for each, how expenditure is to be recorded.It should be made as straightforward as possible. There should also be room to adjust things according to circumstances-as Steven is sleeping less, funds need to be moved around a bit so that you can get some sleep.
    I too am sick to death of being ignored by disabled services most of the time-and then a nasty letter demanding evidence of XYZ will arrive as if the system has been in close contact.As if I am an unsatisfactory, perhaps thieving junior employee.I have responsibility but no power. If they are that fussy about how things are done, perhaps they could go back to employing staff to do it themselves.
    Imagine this at any other workplace. You run, say a cafe, but decree that the customers should buy, prepare and serve the food themselves. You then march around criticising and threatening the job they are doing. Surely you would be told do do it yourself? To take your nose out given you handed the work over? Or asked what you are paid for, given you aren’t actually providing much of anything?
    Now, there’s an idea..

    • Pauline Thomas permalink

      Absolutely spot on.Sally. Who was the person who thought it was a good idea to privatise care? It was much better and fairer when the LA’s provided the care and staff. I wonder how many MPs. and local government politicians have shares or business interests in care companies ? It would interesting to know.

      Care companies exploit their staff. They are expolited so that the business man can make huge profits. That is what we have come down to. To profit from vulnerable people is acceptable in this day and age.

      Mark is being victimised. Hillingdon are bullies. Where are his champions? He needs a union. We had them once in the form of charities for the disabled. Where are they now? Hold on a minute they are being funded by the government and the LA’s. Can you imagine the government funding the railway union or any other unions? No it just does not happen. We have no champions, get used to it.

  8. I’m a recent follower, just speechless and horrified to know you’re be treated in this way. I dont have experience of direct payments or personal budgets. I wish with all my heart this wasn’t happening to you and Steven or anyone else, but since it is I’m glad to be educated about it by your moving and eloquent blogs. I would rather that than be in the dark. As far as I’m considered the more people make themselves aware of this the better; knowledge is power after all. I admire you very much and wish you well.

  9. Argh! How horrendous and over-the-top from Hillingdon. All I can really say is, it isn’t that bad everywhere. I work for Hampshire and we don’t ask for half of what u’ve been ordered to produce. Just keep swimming and if all else fails u can move to Hampshire! Ha ha

  10. Carol permalink

    Hi Mark, I have just been directed to your blog by a reference from a paper that has been written by Dr Jenny Morris OBE. Jenny has been involved in research and policy development on disability issues for 30 years. I am studying a level 4 diploma in Housing Practice which entails doing several papers on independent living. I must say I am outraged and appalled by your experience with your LA. I manage housing for older people and look after 113 residents at the moment, I am a great advocate for independent living, especially older people as I feel they get a raw deal from SS. The recent Care Act gives people an entitlement to a personal budget, parents like you that are only trying to do what is best for your Son don’t deserve to have prats like that working for local council and the politicians in their ivory towers who have no grasp on ‘reality’ want to spend a day in the life of Mark before they start to pass ‘pie in the sky’ legislation that is made to win votes and not change lives!

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