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A Few Choice Words

October 8, 2013

Choice. Social Care Choice. Choice with a capital C, even when it’s in the middle of a sentence. (In the Carespeak book, I advise to be very wary of everyday words that are given capital letters – the fanfare probably means the result will be predictably underwhelming. An unexpected capital letter is likely to mean a sleight of hand).

(1) “What would you like for pudding – rhubarb crumble or wild berry cheesecake?”
(2) “Where would you like to go for your holiday – Cannes or Skegness?”
(3) “I’ve got a spare ticket to a Chris DeBurgh concert. Would you like it?”

Choices (1) and (2) are pretty straightforward and are the kinds of choices we make a thousand times each day. Regrettably, most choices in the social care world resemble the choice in (3) – go to the Chris DeBurgh concert or stay at home and listen to Lady In Red on a loop.

Read any social care literature and “Choice” is everything. Here is my all time favourite social care quote:

The proposed changes enable service users to have more Choice and Independence through offering care and support tailored to their needs”.

It’s all there in that one sentence isn’t it. In the game of social care bingo, that statement is your full house. I marvel that one sentence can induce in me a deep belly laugh and rabid rage. And two capital letters mid sentence! Casting your alarm to one side, doesn’t that statement sound absolutely fabulous. Read it and you assume that the LA are introducing a range of new services that will give the service user a new menu of options they wouldn’t have considered before and opening up new doors to a more fulfilling life.

Wrong. That actual statement was part of an announcement that the LA were closing all of its day centres. So, before we even learn what new options are on offer, one existing choice has been eliminated from the menu. Those people who had previously chosen to go to a day centre – to meet up with their friends; to learn something; to provide routine; to boost their quality of life – have immediately lost a choice.

But all is not lost surely – we’re talking capital C’s here – what is being offered in its place must be infinitely superior. Here we go then – the alternative “service” or “Choice” is to take advantage of a “non building based drop in facility”. I know. That takes some decoding. Let’s not focus unduly on how you can drop into a non building – we need to hold on to our sanity. Day centres are out and our new choice is a non building based drop in service. Or? And here we hit a problem with the “Or?” because there doesn’t appear to be an “or”. No other option. Correct me if I’m wrong but surely a “Choice” means being presented with at least two options. Technically, I know that’s not correct. “Would you like cauliflower?” “No, thank you”. I’ve made a choice on the basis that I don’t like cauliflower. But as cauliflower was the only option, I am left without a vegetable. That is what “Choice” really means in the social care world – this or nothing.

One of the current “Choice” trends is to Take an existing facility and rebrand it as a hub. The idea of “Choice” breaks down completely if the current facility has a specific function – like a swimming baths. No matter how inclusive you may want to be, the only choice on the table at the swimming baths is to swim. You can’t paint there. You can’t cook a meal there. Your choice is either to swim, to watch other people swimming or not go and “avail yourself of the hub’s facilities”. In other words – no choice.

Another favourite “Choice” vehicle is that service users are offered the choice between personal budgets or directly commissioned services. Almost certainly, you will be nudged in the direction of personal budgets under the guise that they offer you more choice in how your care needs are met – a choice within a choice (we’re really flying now), provided you make the right choice. So, I exercise my independence and chose to have a personal budget, only to find that I can’t actually purchase any support with that budget. I’ve lost count of the number of people I know for whom their personal budget is sitting in a bank account, unable to be used because there is no appropriate service available. Eventually, the unspent money will be claimed back by the LA and you may even be charged for this non existent service. Choice is the great liberator. Steven isn’t bothered who takes him swimming – whether its is a directly commissioned agency worker or a PA employed with his personal budget. He just wants to go swimming – the choice is meaningless.

All this choice business is based on the assumption that choice is good for us – we welcome choice. Steven doesn’t like choice. He doesn’t really understand the concept of choice. I’ve learned through bitter experience that some choices can activate a meltdown, as I’m sure it does for a lot of autistic people. “What crisps would you like tomorrow Steve – Frazzles or Chipsticks?” is guaranteed to throw him into an anxious space. I’m not sure how he hears the question. It’s the “or” that causes the problem. Frazzles? Chipsticks? I’d like both thank you very much if they’re on offer. If I opt for one, what happens to the other one? If the choice is between two favourable items, it triggers real unsettlement. On the other hand: “Would you like a packet of Quavers or a packet of Shit”? is easier. One good option. One – er- shit option. So, nine times out of ten, I make the choice and put a packet of Chipsticks in the kitchen cupboard and Steven is happy – I’ve removed Frazzles from the equation and anxiety is kept at bay.

This reaction makes total sense to me when viewed through an autism prism. The most important need in Steven’s life is routine – a predictable certainty that makes the world a safer place. Introducing choice also introduces uncertainty. I might think that it would marvellous to have a takeaway pizza on a Tuesday night but if Tuesday is lamb chops night, the pizza turns a treat into a threat.

So, we have two major problems with “Choice”. We are forced into a position of accepting that choice is good for us – it increases our Independence and automatically means that our care can be tailored exactly to meet our needs. The two halves of that claim don’t hold up for me at all. On several levels. If, like Steven, I am unsettled by choice, you have just compromised my main need by introducing a choice. My needs may be better served by not having a choice or by someone else making that choice for me. Is it a gauge of our independence, that the ability to choose between A and B, is as good as it gets? And that leads to the second problem – think how psychologically damaging it is to be presented with a choice between A and B, when in reality there is only an A. B doesn’t exist. That is the worst con of carespeak – the persistent presentation of something that isn’t actually there. The word “choice” implies that things are opening up – your life could be expanded by the “choices”. Shamefully, the reality is contraction with the appearance of expansion.

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From → Social Care

14 Comments
  1. Kay permalink

    Hobson’s choice.

    “Where to elect? There is but one.
    ‘Tis Hobson’s choice: take that, or none.”

    A form of manipulation with at least five centuries of dishonourable history.

    The thing is, the heid high yins of social care (in Hillingdon and elsewhere) are not primarily mandated to provide ‘choice’. Their task is to provide *care*. Care is only acceptable if it is tailored to meet needs.

    If ‘choice’ fits into care provision as a secondary agenda, then fine, but where a person, like Steven, NEEDS to have predictability and reliability, then offering ‘choice’ is not responding to their needs. It is running directly counter to their needs. Insisting on imposing ‘choice’ on someone for whom choosing is an unpleasant and anxious experience, looks – to a neutral observer – remarkably like abuse. Making a person deal with ‘choice’ whilst actually removing any alternatives looks not only abusive, but fraudulent as well.

  2. Weary Mother permalink

    Every year, in reviews comes up the work word. Would you like a job? ‘Yes please’ my son has said for many years. He just ignores the question now. He has Down’s, over the years he has developed other disabilities, but learned a lot..

    Run the clock back 30 years, ‘Would you like a job’, SW. ‘ Yes please, I would like to work in an office and wear the suit I wore to (his sister) wedding, with a tie like dad’. son said.. Pause for tight laughter, and an isn’t he cute look from worker…..

    ‘Would you like to learn how to do cleaning’, S Worker . Pause to see if the laughing lady has listened to him. ‘No thank you’. ‘…… ‘(son). Who has an O’ level in art ())apart from the writing bit) and has lot of other interests.

    ‘Would it be possible for ……… to be a post boy I say (explain what post boy does) in an office in the suit he has from his sisters wedding’. Gleam in son’s eyes,big smile! Sympathetic look at clearly deluded mother, by S worker.

    So son goes with his mates from the centre to learn how to clean the council residential homes. Until they were assessed as no longer needing to go to work, some of his mates were still being trained how do do this. Too polite or too disabled to say what my son did with his feet, after one ‘training’ session……………………

  3. Pauline Thomas permalink

    If this is ‘valuing people’, I would like to know what it would be like if they decided to ‘devalue them’

  4. From the Wild Wood permalink

    Hi Mark and Steven! today I was going to have a Rant – definitely a Capital Letter, Upper Case and ,most probably, Multi-Storey Rant but, as usual, in your own inimitable way, you have hit the nail on the head and neatly summarised the Through the Looking Glass world of SS Speak – thus saving my keyboard from serious abuse and danger of combustion: many thanks and all best wishes to you both

  5. “We`re talking capital C`s here.” Yes we are and without using the swear word too. Great post. As usual you`ve got to the `hub` of the matter and exposed carespeak for what it is.

  6. Sally permalink

    Brilliant .
    Its obvious that the various managers have attended the same staff training to package cutbacks , excuse mistakes and transfer responsibility. As a parent it is revolting to be subjected to such PR speak, offered because they either think we are stupid and gullible-or they have convinced themselves its true. The removal of a service is always presented as a choice, sorry, Choice, whether in mental health or learning disability. There is never the choice to keep what your child has.
    Choice. Action. Independence. Resource .Support-the four horsemen of the cutback!

    Part of the illusion of Choice is the phoney consultation about changes to services. This is always the most cynical exercise. It goes like this:
    .Suggest a need (or Need) for improvements as if service users are braying for it. Any little criticisms can be presented as total dissatisfaction with current arrangements-but no evidence is needed. You can say “lots of people”have problems with the Day Centre, and not be required to produce them-or you can do a very small and biased survey. (“Do you want more exciting outings? Yes? Is the Day Centre perfect? No? Right, get rid of it then.”)
    Finally there are consultations-make sure these are at times when the most argumentitive parents can’t attend. Listen with deep and phoney empathy . Present the Changes as wonderful-you are there to “explain” that to the dullards. Say you will give feed back to the powers that be.
    Send everybody a letter saying that their objections are groundless. Close the Day Centre.

    I was recently at such a consultation meeting and asked f there was anything anybody there could do or say to prevent the closure. There wasn’t. They were then asked why they were insulting us with the meeting. No response….

    • Weary Mother permalink

      Sally an Mark,

      I regognise everything you have said here. Sally we have had exactly the same experience re hollow day care closures, ‘hubs’ on the offing, and empty ‘consultations’.

      I spent all day yesterday as I have done for more than two years, this time, in conversations with solicitor and others. It is a full time life knackering job. I have no other life. This has gone on and on and on and on, with occasional respites all my son’s adult life. As his disabilities have increased, seriously exacerbated by deaf ears and neglects, his assessment of need has been hacked back to even more dangerous levels. Only by going to external agencies have the LA been forced, always so reluctantly and temporarily, to apologise etc.

      I do know my way around the systems. And yet I am ground into the floor. We commentators are not just Mr and Mrs angry. We fully understand all the constraints (and, the too often daft dogma), and we fully understand that very many good people in the care services are as weary and frustrated as we are, and would like to provide more and better care.

      But it is the dishonesty and weasel words. The patronising ‘who do you think you are’ shock when we know what we are talking about; the insulting pats on the head by people who could not match our children for honesty and integrity; the managers aggressively protecting their team when things go wrong, instead of trying to improve things etc etc.

      It all takes our our energy and our health, and it ram raids our vulnerable sons and daughters of their lives and rights as human beings. OK, I suppose I am Mrs Angry!

      • Weary Mother permalink

        Weary mother to self

        Silly me, forgot to ask, and slapped wrists to all the people with learning disability who came up with the idea / option to close their day centre, lose their friends – just to go bike riding.

      • Sally permalink

        Dear Weary mother here’s how you ask:
        1.Don’t ask-just say lots of people don’t find it satisfactory-you’re not on oath., or,
        2.Innocently ask what they like about the Day Centre as if planning next year’s timetable. They will say :see their friends and list various activities they most like..Then you say that they can see their friends-people anyway- and go to activities without a silly old Day Centre.Close it.
        or,
        3.if not brave enough for the outright closure you crave, just fragment the Day Centre’s services around the Borough, if at all possible requiring several changes of bus.A group run here, a meal there…then notice that not as many people are now using the services. Suggest that’s because they want independence. Close the services down.
        or,
        4. Close the day centre-temporarily !-for renovation, suggesting a crummy and inadequate mish mash of services as a subsitiute. Stall stall stall the Day Centre’s reopening. Later, in the quietest way possible-page 43 of a newsletter is good-say the Day Centre is no more….easy!!

    • Kate permalink

      Sounds exactly like what has been happening with a “service provider” here in Australia in the last couple of months.
      My young daughter used to attend therapy once a week for the last couple of years but now they want to be more flexible and give us more choice.
      This means she hasn’t been to her regular weekly session because it’s not happening however they ask me to come in to meetings (supposedly for them to find out more about our needs and tell us how the services they offer are now more flexible) at times I can’t attend due to work or caring for 3 young children (am told it is not appropriate to bring the children along as it is disruptive to the discussion but they can’t arrange the meetings while my children at school) despite knowing clearly that I work part time and am not able to attend that day.

      They have now offered their alternative “more flexible” therapy at times that we can’t get there. They are still getting funding for providing services though…we’re just the bad guys for not making the effort to turn up and access the services though.

  7. Nichola permalink

    Mark, just seen the mealy-mouthed ‘transformation newsletter’ from my sister’s day centre. This is my email to the key worker at the day centre:

    [email starts] I have just caught sight of the ‘transformation newsletter’. This is a terrifying document which attempts to dress up the dismantling of essential services in the language of ‘choice and control’. This initiative has already had an impact in London – I see the casualties of these heartless policies every day. People with LD nursing a drink for hours on end in a cafe that is big enough for them to not be moved on, or just dragging around shopping centres with a ‘support’ worker. [My sister], like most people with LD, will not benefit from such a scheme. The lack of accountability, lack of structure and the scope for indifference should set alarm bells clanging in the heads of everyone who works in the care industry.

    Two questions:
    1. When is [day centre] closing?
    2. Where is the new community link building likely to be and will it be fit for purpose – ie, will people be able to do all the activities they enjoy such as cooking, sport, gardening, art/craft etc in the building itself? Or will it be Launchpad in another guise, where people ‘access the community’ with an agency support worker attached to the community link building?

    [My sister] loves the routine and the stimulating timetable Fernmount offers. She loves seeing lots of different people regularly every weekday, too. I realise this is a national, government-driven policy, but it is a retrograde step that will damage and blight the lives of thousands of people — the polar opposite of choice and control.[email ends]

    Mark, I am enraged by this nonsense newsletter with its oxymoronic phrases and silly flow charts about this ‘very exciting Launchpad’, Day Opportunities Co-ordinators and Person Centered Facilitators (why the capital letters?). It mystifies and saddens me that people who work in the sector collude with this rubbish.

  8. Pauline Thomas permalink

    After they closed down my son’s day centre in 2006 the rise in mental health problems in the LD community began to rise. It rose steadily for the next five years. A FOI from the relevant health authority confirmed this. I wrote to my MP. I contacted the Dept of Health. I wrote to Royal Mencap. I blogged on the disability forum. My husband brought it the notice of various carers forums which were attended by officers of our LA. Not one single person in authority have bothered to pursue why this is happening. The response from the DoH was that it could mean anything. Surely if no one in charge is going to look how on earth are they going to find out why these nmbers are rising. It bothers me because if this was happening to any other section of our society there would be an almighty outcry, but somehow no one seems to want to know when it affects our loved ones. Not even the bodies representing us are bothered. Now that really hurts.

  9. You’ve put “Shit” with a capital S there. Is that a euphemism too?

  10. Mandy permalink

    As a caregiver of a disabled daughter who set up a social care agency because the existing choices were care provided byagencies at their time with tasks they were allowed to do when they could send the staff or me giving up my job tonnage Personal assistants who were cheaper but may or may not turn up didn’t want to work weekends evenings or nights and I was supposed to manage this for free I fully agree choice in social care language means do it our way or no way for as little money as possible and providing you are safe the quality of how you live your life doesn’t matter a jot

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