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The Personalisation Tidal Wave

February 5, 2014

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):

Option One:
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.

Option Two:
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.

Option Three:
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.

Option Four:
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…..

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15 Comments
  1. Sally permalink

    Mark I have never seen the options set out so well or so clearly.
    Please, please publish this. The MENCAP and NAS magazines would print it.Even the most weasly rose- coloured -glasses advocate of personalisation would be floored by your points.
    Is there ary chance of you appearing in open debate in a public forum? So far the Personalisation crowd appear to promote the idea as sole speakers-and perhaps condescendingly take a couple of timd questions from Carers in the audience. I had more of a Question Time format in mind.

    • I dont think I would be invited Sally. Its not the message the Personalisation posse is trying to promote

  2. Liz. permalink

    Did you see this:

    http://www.bbc.co.uk/news/uk-26021026

    Left me more than a bit bewildered.

  3. ParentCarer permalink

    I have been down that road forget all the buzz words they don’t have choice as there is nothing to choose from. I have let. The council .manage the budget and it is a big one as it includes 5 days in a specialist unit and 15 hours of 1-1 bsupport in the community from the specialist unit. I tried the 1day a week in the community with. Direct Payments and it was fine to start and after a while they could not send a regular carer and the money was sitting in an account and could not be spent and I was doing that day for free I decided enough of that. As you said they know his needs and what he wants so they can facilitate it they just want us to take on more work for no real benefit.

    • Pauline Thomas permalink

      We are on option three but without the carers allowance. We are pensioners who have not yet retired from our caring role. The brutal truth is that it has got a lot harder now we care 24/7. Our peer group are enjoying retirement, we are struggling for a half decent quality of life for our son and ourselves.

  4. Isabel permalink

    I support people on similar options and various permutations and totally agree with the sentiments of the writer. I really dislike the term personalisation. I prefer self-directed support. This is because any institutional employee e.g. social worker or health worker could “personalise” my/your support and I/you would still not be in charge. You would still have to accept someone elses “personalisation” of how your support needs should be met, for, they are “profesionals” and “know best”. And aspirations? Oh, them… oh yeah… “the social bit”. In my experience, people’s aspirations get “personalised” too, by a profesional who certainly does not know best i.e. ignored.
    The role of any advocacy (not only independent advocacy but profesional paid social and health workers and others too) has to be to ensure individuals are truly in charge when needs are assessed and plans made and implemented. When push comes to shove, this means to “fight people’s corners” and expose the hipocrisy of local authorities, not just the governement. Local authorities’ decision makers do have choices about what they do, it is not enough to blame the goverment for “putting them in this position” regarding cuts. Need I remind anyone of the inexcusable nazis or enslavers who were just “following orders”?
    Do start me off on people with communication impairments and people with invisible long term conditions…
    Off the soap box, not off the subject. May I kindly invite the collaborative building of an immense platform made entirely of soap boxes intended to uphold the voices of all who are silenced, ridiculed and dismissed.

    • Sally permalink

      I think Mark’s point (made in 1) is that this is a group of people who can’t do this for themselves. OK, so then either they miss out-or their parents do it-knowing that when they drop dead there will be nobody to take their place.

      This self directed support idea surely works best when the person in question can self direct-can take full control, weigh options, set short medium and long term goals,delegate (and weight up to whom) look at the big picture, oh, and manage staff, payroll etc and commision and compare services.
      That doesn’t sound like anybody I know with LD/autism.Yes they can probably express preferences but as to fitting them into all the other things, that takes someone who is more able, and cares about the best possible way to marry up everything.
      If the person can’t communicate their preferences easliy, it takes a person who knows them and can deduce what might make them happy.Then do all the spade work and monitoing for the rest of thier lives to make it happen.

      My son. for example, would like to spend every last penny on chocolate and would give his money to anybody who asks. He would walk out the door and into the road with the vague idea of a swim without at all understanding the processes which are needed to engage support workers.He doesn’t understand money, tax,bills, the difference between a friend or employee, what an Agency is,that you will need a warm coat in Winter, that you can’t go into a shop and just take what you want etc etc.I’m spelling it out because so much of this deal rests on the assumption that he can do all that, or someone unpaid ,not employed ,certainly not vetted if there at all-can.

      I think its another example of a good concept used as a Trojan horse for service cuts. We’d all very much like our LD young people’s wants and wishes at the front of any arrangements made for them. For years they were ignored.OK-they are now asked to do the lot themselves. That’s called personalisation. They can’t-so if they don’t happen to have immortal parents ready willing and able to do the work this option, as Mark says, disappears. Here’s my fear. The other choices are being quietly taken away. Watch any worker plugging Personaliation squirm when you ask: “And if my son hasn’t got anybody to do this for him? Will you? Will he have a named worker?
      I am sick of services presenting non involvement as “respecting the LD person’s independence”.

  5. ParentCarer permalink

    My son could not direct his own support so it does not matter to him what you call it and certainly could not be in charge. Choice Is a lovely ideal but does not happen in reality they are just given the assumption of choice. They don’t have a choice regarding who supports them it is who the agency can send. You could do the caring yourself and send the support worker away that is not much choice. People who could self-direct would probably not meet the eligibility criteria for support.

  6. Weary Mother permalink

    The personalisation concept starts and ends with an assessment of need. If we are not here to ensure the assessment process is fair eg not bounced on the day, on our vulnerable people, by strangers who have a brief to reduce support eg costs, our people will at this point fall off the edge. Without family and with no access to an advocate to help them through the assessment, and then through a long challenge on these cuts, (even were there such a thing as an independent (and resilient) advocacy service; one that is not in thrawl to their funders, eg the LA)…our sons and daughters are well and truly scre…d. Personalisation is a mirage perpetuated by the well paid people who ought to know better, and who should be ashamed, very ashamed.

  7. Christina permalink

    Hi Mark, I am a professional within this “personalisation” world and wanted to ask the “If you were in charge for the day, what would you change?” question? I find your blog extremely insightful and it is helping identify many areas for me that need to be improved and provided in a flexible way. Thank you

  8. Pauline Thomas permalink

    Anon Carer has blogged on the Foundation for People with Learning Disabilities forum wanting to know why your balanced and very accurate blogs on personlisation are not published widely and also why is’nt Mark a Key Speaker at every conference on commissioning. I must say I could not agree more. It is a big ask Mark, but would you do it? Though I suspect these career social care people would be too frightened of the truth.

  9. anonymous permalink

    THE FIFTH OPTION… WHICH IS ALLOWING PARENTS THE FUNDAMENTAL RIGHT AND FIRST OPTION TO BE INCLUDED AND EMPLOYED BY THE SERVICE USER, TO CHOOSE AND BE SUPPORTED AND PAYED IN FULL SHOULD THEY HAVE TO GIVE UP/JUGGLE THEIR WOKING CAREERS TO SUPPORT A FAMILY MEMBER WHEN THEY REACH ADULTHOOD AND IN NEED OF A CARE PACKAGE NO MATTER HOW MANY HOURS IS NEEDED.

    THEN THE QUALITY OF LIFE AND SAFETY NET WOULD BE MAINTAINED WITHOUT THE FEAR OF LOVED ONES BEING REMOVED FROM HOME.

  10. jen permalink

    so sad that we have got this so wrong – it was never meant to be like this it was meant to make things work by including families, giving people choices, creating better solutions to having a life like going swimming – so choice and control for everyone. But to have this with an enormous number of different levels of responsibility – so option one direct payment (all the responsibility) – option two managed account (less responsibility but still has some) option three a trusted provider to manage the support whether they provide all the support or not (small amount of responsibility – mostly checking the provider is doing what you want) and last one the council manage it ……. it is a good idea – we just have to keep pushing for it …… it is the only idea so far that has really looked at power sharing rather than it all staying with the professionals and organisations. For that reason alone we need to keep pushing ….. for me going backwards is not an option.

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