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Through The Keyhole

October 6, 2016

7.58 am. I’ve just woke up. I had a night at my flat to try and recharge my batteries and slept for nine hours. I’ve been trying to reflect on the last four weeks but it’s too early to get any perspective on the task of turning a shithole into Steven’s forever home.

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People keep telling me that I should feel a sense of achievement. A sense of pride. I don’t really feel that. I really like the flat. I love the cosy quirkiness. It’s great watching Steven marking his territory and getting used to his new surroundings. “Dad – I’m going up to the toilet. (Laughs). No more stairs. Can’t go up to the toilet”. It’s been bloody hard work and I don’t think pride comes into it.

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We’ve had such fantastic support. Jayne and Wayne have done more than I could ever thank them for. The support workers have gone beyond the call of duty. All those wonderful people who gave money through gofundme have helped enormously to create Steven’s new home. And it’s been great how some of the people who’ve contributed to the move have really seemed to have understood Steven and pulled out the stops – Maxine & Debbie the gardener’s, Roy the decorator, Luke the removal man, Bradley the TV aerial man. Normal people with an understanding and humanity that we seldom get with social care services.

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The council continue to create daily hurdles. I’ve had two letter about non payment of rent. Housing Finances won’t speak to Housing Benefit, so I have to act as an unnecessary middle man between the two. Tenancy Management have sent two nagging emails about the new Pay to Stay initiative and want Steven’s income details that I supplied to their colleagues just four weeks ago. The Housing Manager was meant to visit last Wednesday to discuss outstanding issues (broken outlet pipe, gap in front door, light in bathroom that keeps going out) but she didn’t turn up and we haven’t heard a peep from her since. I keep thinking of Sir James Munby’s observation that the State is the servant and not the master. He’s right but old fashioned. His statement presupposes there are services. But the last four weeks have shown that there aren’t any services anymore. Just lots of people trying to be very important and justify their jobs. Apart from the social worker who has been a great advocate, everyone else has been a time wasting hindrance.

 

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Steven’s housing advocate is still fighting for him to be given a lifelong tenancy. Even though he’s been in temporary accommodation for three years, the council’s policy is that all new tenants are on a “probationary” year. It’s nonsense, of course. Another pointless policy designed to let you know where the power really lies. We’ve got an appeal in. But the damage is done. How can anyone ever feel really settled? In a year’s time, will the £7k that I’ve spent building Steven a forever home be money wasted? Steven talks about “living in the Cowley house forever and ever” but I don’t know whether he believes that. Since he was transitioned into adult services 8 years ago, he’s been moved five times, each time the move has been determined by the State.

So for now, we’ll just admire the view of the green (both inside and out) and get on with trying to live a meaningful, happy, fulfilled life.

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And rely on Mr Bean to look over us:

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11 Comments
  1. Tracy permalink

    Trying not to swear. They just have no compassion or common sense, do they? Thank God for the ordinary tradespeople who helped you.

  2. Eve smith permalink

    Really hope this is the start of good things to come and you and Steven get the peace and quiet you deserve…xx

  3. God bless Mr Bean & provide him with any additional support whenever needed – especially with regard to officialdom.

  4. Cathy Hodge permalink

    Glad to hear that Steven is happy, in his new home.
    Shame if had to come with the complications of dealing with social services.
    What a damn headache that was (or still is).
    Wouldn’t it be nice, if all the paperwork and phone calls could just go away.
    Maybe one day, social services will improve. In the meantime, i’m grateful that you had access to some very wonderful but ordinary mortals to help you with the big move, much better than dealing with the services Gods, in my opinion.

  5. Pauline Thomas permalink

    I love the makeover and Steven looks relaxed and happy on the sofa with Mr. Bean watching over him.

    It is a shame that the services that keep quoting the mantra ‘that it is all about the disabled person/service user/patient’ do not actually mean it. The separate social service departments should all be joined up but that means that someone has to join it all up and most times that person does not exist.

    • weary mother permalink

      Perhaps the familiar words …..’Adult and Family Well Being’… so untruthfully promised on LA letterheads should be redacted.

  6. second only to the photograph displaying Steven’s obvious happiness in his home , the photographs showing the two matching shades and blinds are so lovely. Mums, Dads , Aunties, Uncles and friends make sure the shades go up and the blinds/curtains are hung to tuck the home in after a move. Non existent services can mean boxes and bare bulbs/ windows for months and as for the ‘ visit ‘ for snagging and making sure you are ok , that is anyone’s guess. Long may Steven be supported by those who love him.

  7. conrad wells permalink

    Seeing the pictures of before and after and hearing how ordinary people have shown more humanity than the officials that are supposed to have Stevens best interests at heart. The happiness shown on Stevens face with Mr bean over him like a larger house elf made us laugh and finished off a good day. Its those moments when you see that happiness, or the thanks from one of the dudes or something they say or do that makes me glad to be part of their lives. Thank you to Steven and yourself for an end of a good day.

  8. They ought to be paying you for doing it up! Amazing job.

    Five moves, and they still won’t let you rest easy.

  9. Clare Palmer permalink

    I am so amazed by what you and the others have achieved. I hope you are able to get some R & R for yourself.

  10. ” I keep thinking of Sir James Munby’s observation that the State is the servant and not the master. He’s right but old fashioned. His statement presupposes there are services. But the last four weeks have shown that there aren’t any services anymore. Just lots of people trying to be very important and justify their jobs. Apart from the social worker who has been a great advocate, everyone else has been a time wasting hindrance.”
    So true.
    The odd person cares. Which isn’t enough.
    I don’t know if it was on your blog or another where I also quoted Sir James Munby’s ‘..servant and not the master..’, but it honestly doesn’t feel as though anyone in services does any work.

    It’s all sitting and chatting. No one’s made anything nice happen, accompanied me, ever assessed my son’s opinion, etc.
    Some good support staff did cheer him up in hospital occasionally, and take him out, but I needed to be there too.
    There’s no resolving in a timely way, only transferring work or even guilt or confusion to others, especially families. I’ve seen it for several long years.

    So no one’s being served, unless a person can speak and say what their care is like.
    Only support workers carry out anything, the good ones anyway, as the bad ones are paid but unmonitored.

    Why is there no revolution?
    The work ethic in this country is I feel a root cause of care failures. Only in physical health have I ever really seen actual work.
    People (most people, not all) don’t care for others by nature, my GP said to me, as he said the culture isn’t right. It frightened me when he said I was the only one trusted to care for my son.

    So parents or real carers, are so significant here (unless they also don’t care), and ‘natural support’ is more powerful than anyone ever admits.
    Rather than merely referring to family as ‘relatives’, ‘visiting family’, etc., we can fill this gap in lack of care, with some negotiating.
    Let’s force history to change a bit, by negotiating.

    Sorry I’m not concise.

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