The Cliff Edge

It was Steven’s annual Care Plan Review yesterday. The first one carried out by the new social worker. I’ve met her a couple of times about the housing issue but she hadn’t met Steven yet. She wanted to meet him and the support workers without me for the assessment. I was okay about that. I trust the support workers to accurately present our reality. And after years of these assessments, I know that the final outcome will bear no relation to our reality. The social worker is great, so this is no reflection on her. It’s the knowledge that, (a) it’s a form filling exercise and the form is astonishingly narrow in its reach, and (b), whatever is written is completely at the mercy of Panel. That anonymous bunch of people for whom the £ is king.

Steven was disappointed that the last support worker had left. He liked her. She became known as the Pet Shop Boys lady. This was after she carried out the mental capacity assessment to determine if Steven has the capacity to manage a tenancy. It went like this:

“Steven – do you know what rent is?”

“Yes. It’s a Pet Shop Boys’ song”.

” Steven – you will be a tenant. Do you understand?”

“No.Steven  Neary is Steven Neary. Neil Tennant is a singing man in Pet Shop Boys”.

Steven has been been very anxious and destructive all week. It might be the stopping of the medication. It might be anxiety about the house move. It might be that he knows that assessments can turn his life upside down. It was probably all three. I find the pre assessment anxiety unbearable. I threw up twice yesterday morning. I couldn’t concentrate on anything. I comfort ate. Steven broke a light and a lampshade in the living room on Wednesday. I became obsessed about fixing it and replacing it before the social worker’s arrival. It’s daft really. If only we could let go of something we’ve got absolutely no control over.

I think it’s impossible not to get anxious and the only thing to do is to ride the waves of anxiety for the duration. I keep reminding myself that the assessment is nothing to do with Steven at all. The picture it paints is not him. The life it portrays is not his life.

It’s simply the annual walk along the cliff edge. We don’t want to be on that walk but we have no choice. We could be pushed onto the rocks below in one swift sweep of a bureaucratic pen.

It doesn’t matter. It’s nothing to do with us.

8 thoughts on “The Cliff Edge”

  1. Oh Mark, I’m with you on this one…so out of control makes you feel ill and there’s not a lot that we can do tho change things….wish there was, then there would be some very happy young people wouldn’t there?

  2. The degree of scrutiny Stephen is subject to is ridiculous and your blog illustrate the time and resource wasting, anxiety producing lunacy of the whole thing.

  3. So wrong that a group of social workers and council management have been given the power to wreck havoc on people’s lives.

    Many parents of children with LD/autism have steered their loved ones through education and maybe college and then fell off the cliff into the arms of the social services. It is like being in the lions den with the Roman Emperor deciding with his thumb if you live or die.

  4. Ah Mark Hun Steven made me laugh about the pet shop boys. My fave band. Lol.
    As for his anxiety who would not be anxious with all of that. I agree with you the 3 would put him in that position poor Steven.

    And poor you. It’s so hard and difficult to relax in those kind of situations.
    But mark you doing s fantastic job
    Well done.
    You are in father in a million. Most fathers would just run way. You are a hero dad friend and campaigner. Keep going. God bless you. Leo

  5. I am so sorry you are feeling so anxious and for bloody good reason. And poor Steven is upset too.

    It’s astounding that the intense distress and strain these assessments bring is never acknowledged.

    Have you ever seen the TV movie “The Lost Prince? ”
    It’s about one of the present Queen’s uncles who had epilepsy and autism, was hidden at home then put in a cottage on the Estate (Oh for an Estate ) with his Nanny, his only friend.
    There is a very good scene in which the Nany is taking the child to yet another assessment. He is staring out of the carriage window with interest-he doesn’t usually get out and about. She is saying nervously “-and if they ask you which animal is the smallest , say ant. Can you remember that? Say ant. You are safe with an ant. Can you remember?”
    I have always remembered that because it perfectly captures all of our intense anxiety before such assessments. Please try to hold it together. Please do this. Please don’t do that. Oh God, what will the outcome be?
    Do,you know when you can expect to hear from the panel?

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