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Compare & Contrast

June 7, 2014

On Wednesday, I wrote a post for the #107days blog called “The Cast”. I’ve no idea why but for some reason, it has attracted four times the views of any other of 81 posts I’ve written as part of the campaign. It was quite a simple post, where I listed all the people appointed by Hillingdon during 2010 to work on Steven’s case. The list was as follows:

1 social worker
1 social work manager
1 support planner
1 transition manager
1 Head of Services
1 Head of Residential services
1 Positive behaviour support manager
1 Deputy positive behaviour support manager
4 psychiatrists
1 keyworker
1 linkworker
2 psychologists
4 best interests assessors
1 Safeguarding lead for DoLs
6 Locum borough solicitors
3 speech and language therapists
1 Learning Disability Community nurse
2 Occupational therapists
approx 20 Unit support workers
1 Dietitian
And the commissioned agency on a 100% mark up for every hour they provided a support worker to work with Steven.

Since Wednesday, I’ve been observing Steven going about his business and been struck between the contrast of all those professionals who think they have something valuable to add, and how Steven is capable of managing his time and doing what interests him. The last week has been potentially tough because several of the normal, reliable routines have gone out of the window. I’ve taken the week off work to get on with sorting out the funeral, all the paperwork and the old marital home. So, I’ve been around at home more than I would be, especially on Thursday and Friday. Also, the health club where Steven goes for his Tuesday and Thursday spa is closed for refurbishments, so he’s had to do alternative activities.

I do find it entertaining, watching Steven entertain himself. He usually doesn’t like other people involved when he’s doing something unplanned. On Thursday afternoon, I got back from the funeral directors and Steven was perched on a chair in front of the CD player, working his way through his four disc Abba CD set. The support worker told me that he’d been at it for over an hour. All in all, he sat there for three hours, giving a running commentary to himself of each song. Yesterday, I had the horrific task of going back to start sorting out the house. I arrived back home about ten minutes before Steven got back from the day centre. I brought home 14 photo albums, so when Steven got home, he spent the next three hours before swimming, reading through each album. He only called for me when he needed my input for times, like the snap at Weymouth. He pointed to a pinsize man in the distance of the picture and wanted to know what his name was and the colours of his trousers and whether he’s been stung on the knee by a jellyfish. There were several of those back stories created during the session. It was the same this morning. I went into Uxbridge to meet my friend Mary and got a phone call from home. Steven had sorted out his Smash Hits 1999 Party video (hosted by Steps) and he wanted to tell me a good H from Steps joke. When I got home at midday, the support worker told me that Steven had been busy all morning – after the video he went off to the computer and spent an hour searching Youtube for clips of Carry On films. The worker told me that he tried to be involved but Steven sent him away with: “Steven Neary wants to do Charlie Hawtrey talking on his own”.

I’m really proud he can do all that. When he was in the Unit, they correctly identified that unfilled time and space is problematic for Steven. An autism expert had sent me some stuff about sensory underload, which fitted very much my experience of Steven when he has nothing to do. I found it interesting that an overload or an underlaod, can both easily lead to the same outcome – a meltdown. BUt what the Unit got terribly wrong was that they couldn’t acknowledge that they were creating the unfilled space. All the things I’ve mentioned above weren’t available to Steven – no computer, no DVD player. And the things that were available (a video player), he couldn’t use when he wanted to – he had to negotiate the use with staff and other residents. And worse than that, the Unit, and in particular, the social worker, put value judgements on anything Steven did. Creating a story around a photo was seen as valueless, whilst learning to load the washing machine was seen as tremendously valuable.

So, in not providing the opportunities for Steven to get on living his life, or by placing judgements on the things he wanted to do, they then created, what they saw as a need for all that external input. Utterly self serving. They couldn’t see that lying on the sofa with nothing to do or nobody to talk to about the things he wanted to talk about set off a meltdown but they employed all those people in trying to find a solution. I have to admit, I still get angry when I think about how, not only was that such an abuse of Steven, but also, what a collosal waste of money and resources.

If any of those people in that list above were to become a fly on our wall, they wouldn’t recognise Steven. But then neither, would they see the part they played in that.

From → Social Care

  1. Everything yo say is common sense why haven’t the authority got it? Such a waste of resources

  2. Sally permalink

    It is remarkable when staff can’t see that perhaps they have unwittingly set up the conditions for a meltdown. Was its a lack of resources or imagination?

    I am all for people being helped to learn how to do tasks which help them deal with the world and gain a bit of independence, such as setting the washing machine or making a sandwich. I can see that being less utterly dependent on others to meet your needs is a good thing and staves off meltdowns caused by the frustration of others not being able to met your needs . Well and good. But from what you say there were great blank periods left in Steven’s day which he was expected to fill with very little resources and no thought given to what exactly he would do.
    If, for some reason, the tv/computer couldn’t be used as much as he liked-really couldn’t-then they should have thought about what else he could do with the time that he’d like. And structured the fun in.

    There’s a missing bit.There was no structured fun. Its incredible that it is still assumed that soneone with LD can occupy themselves for long periods with no assistance. Its rather like the help kids with LD/autism are offered at school which usually stops at lunch and playtimes. Yes, this person who requires one to one in the class can suddenly manage long blank periods with noise and difficult contact with others. A miracle! Good Heavens, though, the child is in meltdown. What on earth could that be about?

  3. Adam permalink

    You’re an amazing father. My close friend, who is autistic, linked me to some BBC articles on Steven and yourself after I linked to one today on autism’s costs to society/the country. . It’s quite interesting. Anyway, it amusingly eventually led here. I am really impressed at all you do for your son. He is lucky to have you. I think what you experienced goes beyond just autistic “care” however. We no longer have personnel but human resources. We have had those big scandals over the care for elderly people and those with behavioral or learning disabilities. It’s no loner customer assistance but support – presumably for those “things” that buy/use a service. In some ways it is kind of scary. I am really happy to see you bringing back the human element and reminding people that different people are people too! Steven may see the world from a different lens or perspective, and I won’t claim to know what that is, but he still sees the world and experiences it. Lives it. I think this can easily get overlooked when all we worry about nowadays is the cost of things. We only have health and safety to avoid liability lawsuits later on and to avoid loss of efficiency for when someone is injured and the cost to pay for their medical care (especially in America) as well as to hire and train someone new. I wish you all the best with the ups and downs of life – not your unique circumstances – but life. I’m glad that after reading your blogs you seem to be in a much better place than in 2010. Take care ^^

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