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Choice – Andy Williams or A Jigsaw

August 16, 2014

Another of those tense, awkward moments looming. Whilst Steven was away in 2010, the staff at the Unit introduced him to a day service run by the positive behaviour support team and he has been going there every Friday since. I’ve writen before about how nervous his four hours there each week leaves me. The staff at the day centre are the same as the ones at the Unit and I fear Steven’s actions being misinterpreted and the whole nightmare of 2010 starting up again. There are four other regular service users who go and Steven doesn’t really interact with any of them, so anything can happen and each week, I breathe a huge sigh of relief when he gets home and the support workers report a trouble free day. There is nothing to do at the Centre – I’m not even sure what its purpose is. Steven takes his ingredients for his pepperoni pizza there every week and makes it sometime during the day. But the rest of the time, he sits and watches the TV. There are jigsaws. And colouring books, that I wouldn’t say were old, but when I say that Steven asked what colour to do Alma Cogan’s hair, you’ll get the picture.

For three weeks running, the cab has arrived to take Steven to the centre and each time he has chosen to stay at home. The support workers try to persuade him but Steven is quite adamant and once the empty cab drives off, he gets on with the day that he has obviously planned. On Friday, he started by pulling his chair up to the CD player and put on Andy Williams’ greatest hits. An hour later, he went out in the kitchen and made his pizza and then got the support worker to help him make a corned beef sandwich. Steven then announced: “want to go to the pub for orange juice, some minstrels and Erasure on the jukebox”. Off they went. And when they returned, Steven chose an old Brookside video and watched that until it was time for tea and swimming. Sounded like a packed, enjoyable day full of positive behaviour without the support of the specialist positive behaviour team.

Then I worry. Suppose Steven decides he doesn’t want to go back to the centre (I wouldnt blame him). Would I be congruent when the PBST ask why? I just know that it will be very tricky and very exposing to announce Steven is giving up the centre because he gets bored.

Then I race on and speculate what would happen if all the service users follow Steven’s lead and decide to give the place a miss. That would be extremely challenging. The Council see the place and the PBST as one of the stars in its crown. A lot of jobs are tied up in keeping the star alive. What would happen to all those people if everyone voted with their feet?

Perhaops this is why “choice” in the social care world always feels nothing of the sort. Steven has already made an independent choice and chosen Andy Williams over a Pingu jigsaw. But it’s not really a choice any of the professionals would want him to make. In doing precisley the thing that the council trumpets (choice and independence), Steven ratches up the tension. Sod it.


From → Social Care

  1. Carbolic permalink

    “Then I worry. Suppose Steven decides he doesn’t want to go back to the centre (I wouldnt blame him).”

    Erm…..I hate to break it to you…..I think Steven has already decided he’s not going back.

  2. In what parallel universe is going to a place you don’t want to go, to be with people you don’t want to be with and do things you don’t much want to do seen as a good choice, showing independence and reinforcing positive behaviour?

    This is my problem in a nutshell – and it ain’t easy. I do repeatedly explain that part of being an adult is accepting that sometimes you have to do things you don’t want to do – but those aren’t choices exactly, are they? My daughter has been fortunate in recent years, for complicated reasons. She HAS been able to make choices, and has blossomed in confidence and some real displays of maturity and independence.

    Our children may be legally adults at 18, and if they want real independence,no good parent is going to obstruct that. But calling what is offered independence can do a lot of harm.

  3. If the Council seems to be struggling to understand the notion that Steven can, and is entitled to, exercise choice, perhaps you could offer to facilitate a CPD study day for the PBST, on the meaning of supported decision-making under the Mental Capacity Act. At your standard rate, of course. Plus travel expenses.

  4. Mark I live this and it reminds me of a Christmas. Every year the hospital staff in the group home let people down. They cried off sick to get paid double but get colleagues to cover also on double. Trick to go in for half an hour! I couldn’t stand these horrible people. I tried to find them out and report them but they were flaming crafty and the hospital just ignored it anyway.Short of lying under a bed( which one of my friends did once but that is another story) how could we just undo this crap, flagship service.
    So this Christmas people I knew volunteered to have people in their own home. I swear to you no one went back! The most brilliant coup for three people! No going back no staff needed. New homes for J, J and R I could have danced all night. That horrible E support worker, leader if the gangs face was a picture. I can expose it now as sooooo many years ago. Ha ha ha. Go for it Stephen and be the pied piper that takes the others with you.

  5. anonymous permalink

    What is the rationale behind 18 workers going through someone’s home on a weekly basis?

    Could this have something to do with keeping people in employment? when one expressed concerns….ignored…. Ps, care package was for the workers and how to keep them on a rota and happy…..

    When a care provider informs you that he is running a business and his business comes first and each time you have a telephone conversation with care provider you can hear him splashing about in his bath surely safeguarding concerns should be taken seriously? Is it not the responsibility of the LA to ask how things are?

    You could turn the situation round and the service user (now a much hated word what service? oh yes the sickness service) becomes the risk and to safeguard take P peacefully from his own home and stick them in a ATU…for treatment against their wishes???

    If I told what care providers calculated profit was per month you would be shocked when none of Ps needs were being met…..Austerity….What a load of Bullshit.

    • Pauline Thomas permalink

      Anonymous this austerity myth was carefully orchestrated to make people believe that we have no money left for good care. It was a manufactured lie to give credence to the carving up of social care and handing it on a plate to private care providers. What happens to say a company that makes biscuits when the profits are down? They make the packet smaller but still charge the same price. What happens with a care company when profits are down? They cut 10 minutes off the time allotted to care for the old/disabled person and still charge the same. The tragedy is that one money saver is a biscuit and the other is a human being.

      Mark your son is growing up and deciding that crap day services will not be tolerated. My son did the same. The powers that be decided to close his day centre down, but not before cynically deciding to run it into the ground first and then say that no one wants to go there anymore. In a way they were correct, no one wanted a day centre with no canteen, no trips out and a skeleton staff that was not interested any more. The new regime now is that most service users (I hate that description), needs to employ a carer to accompany them everywhere they go, whether they like it or not. My son hates that. Your son Mark needs the support staff and clearly gets on well with them. My son liked going to the day centre in the borough transport with drivers and escorts who he liked. He enjoyed the sessions and the staff that were there. (incidently staff that were employed with rights and a pension). My son is in his forties and he did not want to change. Where was choice? Your son and my son have entirely different care needs but they both have the right to choose what is right for them, just like any other citizen. The problem is because their care is provided by the State, the money allotted to them has go through many layers of bureaucracy, each taking a slice of the cake, before our loved ones pick up the crumbs. Just look at the Bubb and co lot and the minutes of their meeting to know that nothing has really changed in spite of their protestations about rights and autonomy for our loved ones.

  6. Weary Mother permalink

    My analogy to explain LA Adult Care Service, to friends who are outside our community,, has been a frozen pea factory ……..

    where the ‘machinery’ is constantly updated and polished at increasing cost, with the frozen pea technicians paid increasingly to study and identify ways to improve freezing peas….

    but increasingly fewer/no frozen peas (or any peas) coming out the other end.

  7. Kay permalink

    Having just got going fluently with the PA team for my son the question has come up as to which building based resources he might like to access. The leisure centre, pub and cinema are a no brainer for him but when it comes to what we call the non special special needs building based services being put forward a gloom descends and he starts clenching his fists and looking like his world might end shortly…….Go Steven! 🙂

  8. I don’t blame Steven for opting out. The centre sounds dull and unstructured, two things which most people hate, especially if they have ASD.Of course there should be more going on. There should be an interesting range of activities, and a cheery timetable of these out each week. There should be named workers attached to each activity. People attending should be encouraged to suggest what they would like to do at regular planning meetings. There should always be something to look forward to and to prepare for. We all know what a good day centre looks like. The enraging thing is that such a place is not all that more expensive to run. It’s mostly a question of care ,planning and imagination.
    I know its worrying to have to say one’s young person just doesn’t want to make use of such a place because the fear is that rather than improve the place they will just withdraw the option. You could try asking how anybody from the LA would like to sit for several hours with some old puzzles and a pizza every week.It just takes an understanding that people who are Learning disabled/autistic need fun and interest too.
    Even if they improve things anybody who has opted out will be hard to entice back.Once someone with ASD has decided they don’t want to go to a place it is hard to reverse that.Its maddening that this is not understood.Why can’t they just admit the centre is dull and poorly planned, improve it, and then launch an energetic campaign to persuade the people who have opted out to give it a try?

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