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.