I’ve reached the end of my Personalisation line. I’m going to try and erase from the dictionary inside my head all those buzzy words like: personalisation, in control, inclusion, person centred plans, the choice agenda. In their own way, they are very laudable but I just can’t reconcile the jazzy brochures I read on the subject with my experience and the many stories I read in the various carers groups I belong to. There seems to be a chasm between the pictures of the young woman with downs syndrome at the ice skating rink and the stories I hear of people who don’t even get out of the starting blocks when it comes to individual care plans and personal budgets. I cannot bear to read any more stuff from “The Tidal wave Towards Inclusion” group when I know that thousands of people are scrambling around for small crumbs. Less of a tidal wave – more a small dribble of piss. I do not understand how some people can talk about using their personal budget to fund adventure breaks in Iceland whilst the majority cannot get the funds to enable them to be supported going to Iceland to buy a black forest gateau.
If you need care, the way I see it is that there are four options open to you. Steven’s care plan is pretty straight forward – he needs 2:1 support when he is out and about; he needs 1:1 support in the home and he needs specialist transport to get him out and about. He’s not fussed about adventures in Iceland – he is more than happy going swimming and going to the gym. That shouldn’t be too difficult surely. This is what I see the four options available to him (and me as his carer):
Go for a full personal budget and organise the whole shebang yourself. That sounds very liberating and few people could argue with that from an “in control” perspective. The main drawback with that option is that in order to have support to go swimming, you suddenly find yourself becoming an employer. That opens up a world of tax returns, employment contract law; recruitment procedures; arranging training and supervision. Tasks that take up valuable time. In my average week, I get 2 hours on a Tuesday morning and 1 1/2 hours on a Friday evening when I’m neither caring or working. Most Friday evenings are now taken up with tasks pertaining to being an employer.
And what happens if you don’t have anyone to organise being an employer for you? Then quite simply, you cannot avail yourself of personalisation. There is nobody around to take on the jobs expected of you when you are awarded your personal budget. Option One disappears.
You give up on the idea of managing things yourself and throw the whole lot over to commissioned services. You are spared the hassle of being an employer but you are also spared any semblance of choice as well. And the, as I’ve recently found out, you discover that the agencies commissioned to support your son swimming, charge such astronomical fees, the budget is always fragile because commissioners will inform you that such high cost support is unsustainable. They won’t tackle the providers – you become the problem for having such high cost needs. I’ve been very caught up in the moral and ethical side of commissioned services. It really sticks in my throat that so many people are making so much money out of Steven’s disability. But if you can park your morals, then Option Two may seem a better option.
Give up work and do the whole care yourself. Try and get by on the state Carers Allowance and don’t bother social care for support. I guess they’d like that. It might even be termed “personalisation” but it’s not really a winner in the long term.
Put the person you care for into a home and avoid the whole issue of Personalisation. I’ve never read a single story about a person in a home receiving a personal budget and having the freedom to decide how to use it. In a care home, it seems to me, you are reliant on the staff employed by the home to provide your life inside and outside of the home. I remember a story from Steven’s time in the Unit. Our local swimming pool reopened after a seven year closure. It was a big event with both an indoor and outdoor pool. Steven still had his own support workers at the time, so off they went and Steven was able to fully engage with everything the pool had to offer. Another resident wanted to go but had to wait until there were sufficient people on shift to facilitate this. And when he went, he wasn’t allowed to swim – he went “to look” – an observer of other people living their lives. Not very stimulating perhaps but it gets you out of the employer/ moral dilemma situation.
I’d really like there to be a fifth option. One that could open the doors to people needing care and their carers. One that respected the tough job carers have and not expect them to take on board yet more arduous tasks.
If I want to go the gym, I can just pack my kit in my bag, fill up my protein shaker and poodle off down the road. If Steven wants to go to the gym, I have to become an employer or pay a company £16.85 an hour to take him there. If any of the personalisation experts reading this know how Steven can get to the gym in pretty much the same fashion that I would go there, please let me know…..