The Hidden (Emotional) Costs of a Personal Budget
I’ve ben tweeting today about my latest dilemma with the Personal Budget. I keep swinging between resentment and a feeling of guilt that I’m being too greedy.
When we were first told that we had to have a personal budget, I asked for three nightshifts a week. The LA “awarded” two. Since, I’ve had my own flat, we’ve actually had a support worker present on six nights per week. Two are paid for out of the Personal Budget. On Saturday, a friend stays over and takes charge if there are any problems. On Tuesday, the support worker ends his shift at 6pm. He starts again at 6am on Wednesday. He choses not to go home as he has a long travel but stays over. I pay for two further shifts out of my pocket at £130 per week. I’m running out of money, so this is not sustainable.
Why is this important to me? I’ll be 57 in a couple of months. I have less energy than I used to have. If I don’t get a decent night’s sleep, I’m good for nothing the next day. I have a job where I have to be very attentive. I have a caring role where I need to have my brain switched on at all times so I can respond to Steven’s very detailed conversations. Dealing with “Services” is incredibly draining – 1000 times more so than caring for Steven. Dealing with Steven having a meltdown is a piece of piss compared with having to work out your tactical approach to having a Fairer Access to Care Services Assessment. Having someone work nights really works. For months now, I get about six hours sleep each night and Steven has learned that if he needs anything in the night, he sorts it out himself or asks a support worker.
So, why don’t I just go back to the care planner and ask for the Personal Budget to be increased. the answer in one word is fear. I have been warned and know that it has already happened to several people in the borough, that if the costs of living in one’s own home are deemed “unreasonable” by the council, the person will be moved into a supported living placement. Much cheaper because the resident’s budgets are automatically pooled (whether they want to or not) and both day and night support is shared between all the residents in the flats. Even though Steven would hate this and he would be at risk, it would undoubtedly be a cheaper option.
The only thing that I’ve found ever works in discussions with the LA is money. Getting respite in the first place was down to me making a strong financial case for it. Steven is only still allowed to live in his own home because I was able to demonstrate a huge financial savings from the old arrangement of commissioned agency support. Best Interests, the Care Act & Wellbeing don’t even come into it.
Harking back to my last blog post “What Happened to Sad”, I learned through bitter experience in 2010, that it is very risky to express an emotion or bring an emotional element into your argument. If I cried over what they were doing to Steven, it was recorded for their witness statements as “Mr Neary is too emotionally needy of Steven”. If I expressed any anger, it went down in the statement as “Mr Neary is unable to work co-operatively with the professionals”. So, eventually I shut up and didn’t express any emotion at all but that was viewed in the witness statements as “Passive aggressive”. Life is emotional. A carer’s life can be extremely emotional. But best not to express or allow emotions to enter into the negotiating a care package arena.
I’ll get it sorted. If I move some hours here and cut some hours there, I think I’ve got enough to cover one other night, leaving me only having to fund one night myself. That’s okay. I don’t need to ask and run the risk of having Steven’s life turned upside down. Of course, because the Personal Budget is so micro managed by the LA, I have to be careful about how I present the changes. There is nothing “flexible” or about “choice” with our allocation. Every penny of the budget has been “awarded” for something specific and moving money from day support to night support will probably be seen as breaking the contract. To be honest, I don’t care. I can feel so weary by the surveillance and the bureaucracy that in a perverse way, the weariness becomes part of my suit of armour. I’m neither worn down or worn out but it could easily happen.
Please. Let’s not call this Personalisation. Or being in control. Or person centred Care. Or choice.
It ain’t any of those things.
From → Social Care