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.