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Lady Hale Returns To Cowley

May 9, 2017

I was going to write a very different kind of post today to the one I’m actually publishing. I’ve been reflecting a lot on how Steven is very much king of his castle in his own home. I’ve noticed everyone is using a new language to reflect the fact that for a large chunk of the week Steven and I are living separate lives. The other day, one of the support workers asked me about one of Steven’s mates – “Does he live on his own like Steven?” The next day, one of the other support workers asked me to get a new mop and said, “You could bring it when you next visit”. Even Steven sees things the same way now. We were discussing our trip to see an Abba tribute band and Steven wanted to know if I would be staying after the theatre – “Dad’s coming for two sleepovers next week?”

Another sign of how settled Steven is but also demonstrates how he cannot quite shake off the trauma of 2010 happened on Sunday. He overheard me talking to the support worker about the old house. Immediately, Steven went into a panic attack. “Steven Neary’s not moving again. Steven Neary’s staying in the new Cowley house forever and ever”. It took well over an hour to reassure him that he is staying put.

That’s what I was going to write about. Then this morning I got an email from his social worker about the Community DoLS. It’s ten weeks now since the assessment that led to the decision that Steven is being deprived of his liberty in his own home. We haven’t heard anything since. No paperwork; no court date. Until today. The email was asking to arrange a date to carry out a mental capacity assessment.

My heart sank. I know that mental capacity assessments have to be decision specific, so assumed the decision would be the same as the ones Steven had back in 2010 – does Steven has the capacity to decide where to live? Even before I clarified the matter, I started girding my loins. In my view, Steven is quite capable of stating why he wants to live in his home and why he doesn’t want to live anywhere else. He could come up with quite a list in both the pros and cons columns.

But I was wrong. That’s not the decision that Steven’s capacity will be assessed on. I sought clarification and got an immediate reply:

“The decision is whether Steven has the capacity to consent to the care and support he receives, which amounts to a deprivation of his liberty”.

Every word of that sentence makes my skin itch. How will that be presented to him? “Steven – do you mind Michael going with you to Jay’s sweet shop to buy your Frazzles?” “Steven – is it okay for Dad to order your tickets for the Abba Gold show?” “Steven – do you consent to Alan doing your haircut on Thursday?”

Don’t forget, under their reading of a Community DoLS, all those normal aspects of a decent care plan for Steven to live his life equate to him being deprived of his liberty. The problem with a capacity assessment is that it will expect Steven to understand that going swimming with Francis and Das means in the nonsensical, bureaucratic world of social care he is deprived of his liberty. I don’t understand it. It’s beyond my capacity. So, it’ll be beyond his capacity too. But the process of deciding he lacks the capacity to see his life through a bureaucratic lens is likely to retraumatise him.

I’ve already written back to the social worker to say that I will not be taking part in this exercise when she visits. The time she is suggesting, there are two support workers on duty and I’ll leave it up to them. That may sound chicken but I can’t support Steven through the process of the assessment. Nobody can. He will get distressed because he won’t understand what is being asked of him. My job is to help him with the distress, after the event. To try and reassure him that the meeting was a pointless activity & that he can stay in his Cowley house forever and ever.

What I really want to do is to write back and say, “LEAVE HIM FUCKING ALONE”.

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21 Comments
  1. So let me get this straight – receiving care and support is technically a deprivation of liberty. That’s utter nonsense, you could far more convincly argue that not providing care and support for somebody to do the things they want to do is a deprivation of liberty. Which would make pretty much every Local Authority in the country in breach of the MCA.

    • Yep. They’ve lost the plot completely. Going to a concert with two support workers and Dad is a deprivation of his liberty!

  2. I was only half way through reading this, and thought pretty much go on to say…” I’m having trouble understanding this, so how on earth is Steven going to understand this? ”
    To me it feels like some kind of abusive act from them to put him through the assessment, as the assessment process will be clearly detrimental to his wellbeing!?!?
    You couldn’t make this stuff up could you?
    Thanks for sharing your knowledge and writing about your experiences.
    Sounds like ‘Team Steven’ is doing really well. Kay x

  3. Hi Mark, just realised I commented from my son’s account by mistake!!! Could you delete my comment under the ‘Joe’ account please. I’ve redone it under mine. Thnx

  4. Gillian Wood permalink

    MLB, exactly what I was going to say, thank you. I’ve had similar difficulties with my son, there is such a fine path to tread between care and neglect, support and abuse, and as parents/carers we face unending battles in trying to ensure the person we care for and about has a stimulating, enriching and fulfilled life. The current care crisis which seems to ignore those with disabilities and focus entirely on the elderly does not help one bit!

  5. shirley buckley permalink

    Read Conor Sparrowhawk on the BBC

  6. simone aspis permalink

    Hope I have not misunderstood what u are saying – is the LA saying that Steven having support amounts to deprivation of liberty? It sounds like if Steven does not get the support he would be deprived of his liberty because he needs the support to have the same freedoms that non disabled people take for granted – spontentiousity – so is the LA are saying that if Steven was on his own without support then this would not be a deprivation of liberty because in theory he can come and go without support.

  7. Emily permalink

    Would it help if a petition was set up under the heading “leave him fucking alone”. I’d sign fir sure.

    • simone aspis permalink

      thanks Mark – I would not want the same misunderstanding that I had last time!

  8. What utter stupidity!! Compare the life Steven has with Finola Moss’ blog which highlights the kind of DOL that nobody wants to address. Absolutely criminal!! 😡

    • Yes. Let’s remember them too every time.
      The completely silenced ones. Totally financially abused.
      Those who can’t speak out – left in their rooms, not taken out, not interacted with in a meaningful way, not fed or dressed properly, families unable to really help as also cruelly deprived of their liberty to be involved in their lives as they should be and had been previously.
      It’s the stuff of horror films.
      Not seen, not heard, no one but family interested, no advocacy, purely profited from as commodities – and that’s in the ‘community’.
      Imagine living like a totally vulnerable elderly person .. most of your life, not just at the end.

  9. simone aspis permalink

    I suspect what the LA want to reduce Steven’s care package under the guise of promoting his theoretical independence ..

  10. It’s a nightmare so know where your coming from mark so frustrating .

  11. Joan permalink

    Mark l am getting desperate trying to track down the Gladiator videos going back to 1995 with wolf and Saracen and the rest. I remembered you mentioning that Steven was into them. I can’t get them on Amazon or EBay may be you can help. My son will not accept that he won’t get it for his birthday and DVD’s won’t do. Do you know where l can buy them? Thanks

    • Sorry Joan, I don’t. I check Amazon once a week for the one that Steven is missing but they are always listed as “unavailable”. I spend an obscene amount of time browsing in charity shops too!

      • emily permalink

        HI Mark, Please let me know which season/episode you are missing of Gladiator. Here in Cyprus we have a large expat community that donate videos to the thrift and charity shops. Also are you looking for VHS or DVD. I would happily send it over to you and Steven. Max and his episodes of Sesame Street are scratched and often stick but we can still replace them. If anyone is ever looking for “stuff” that is discontinued they often pop up over here due to the aging expat community 🙂

      • It’s the one from the 1993 series with Wolfman on the cover.

      • emily permalink

        I’ll keep an eye out and if successful I’ll contact you to send it over. Fingers crossed

  12. simone aspis permalink

    Ebay or a fanclub maybe?

  13. Joan permalink

    Thanks Mark l will have to keep looking. Tell me about the obscene amount spent on videos ad recorders. If anyone can help l am willing to pay he does not mind which ones a s long as it is about the gladiators.

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