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The Great Housing U Turn (Part Two)

August 4, 2013

Two days on from the news – where am I?

Still reeling actually. I know that I am meant to be prostrate with gratitude that Hillingdon have saved us from homelessness next week. I am hugely relieved but I’m also very uncomfortable with what’s happened and cannot lock my anger in a nice contained box. It was November 2012, 9 months ago, that I sat in a meeting with the assistant director of housing, who took down all of Steven’s details and promised to get on to it there and then. All this last minute stuff is bullshit.

First and foremost, here is yet another decision that has taken no account of Steven. For the past three months, we have been preparing him for the move. Every single meeting I have ever had with the psychologist and the positive behaviour team, the same mantra has been used – “preparation is the key to keeping Steven’s anxiety down”. Steven has been fine about moving but what has led to the massive anxiety he has been experiencing is that I’ve never been able to tell him where we’ll be moving to, or when. The arrival over the last three weeks of people viewing the flat has increased that anxiety considerably. And now, after Friday’s decision by the council, the one bit of certainty (moving mid August) has gone. You may remember that he started to pack his Gladiators videos into boxes – now they will have to come out again. But for how long? The bottom line about the decision to remain in this flat until they find somewhere suitable is, is that really in Steven’s best interests?

Secondly, I’ve had lots of contacts from our my legal friends and it is now clear that Hillingdon have breached the Data Protection Act by entering into negotiations with my landlady without my knowledge or consent. Even if they genuinely felt they were doing it for the best, you can’t sideline people that way. That message came out loud and clear from Justice Peter Jackson’s ruling back in 2011 but clearly hasn’t been heeded. Steven and I are nowhere in this. There must be a serious amount of money changing hands to come to this agreement and that sticks in my throat too. For the last year, I’ve heard lots of pious statements about “equitable processes” and “fairness to all” but the outcome of this decision is that Hillingdon must be paying far more money than they have done at any time since I first claimed HB back in 2009.

I’m annoyed about Steven’s new furniture. I don’t want to have to keep it in some damp storage garage (that the council will charge me for) until they find Steven a home. That could be months. Buying Steven his furniture was a crucial part of our preparation for the move – he helped chose his new bed and bedroom furniture and was very excited about that. It was galling last night as we did his Goodnight Basil & Manuel routine, to see him struggling to get comfy on the landlady’s broken old bed. What I want is for the landlady’s furniture (what there is of it) to go into storage until we move and for Randalls to deliver Steven’s furniture here.

Lastly, their joint decision leaves me in real financial hardship again. Since the housing benefit was stopped, I’ve lived on something on toast for six days a week because money has been so tight. No financial assessment has ever been done because the council wouldn’t do one. Instead they came up with an arbitrary figure and I’ve had to try and find that for the past 10 months. This new arrangement prolongs that financial agony. I’d like them to either do a proper financial assessment so we get a figure of how much I can actually afford, or they charge us the going rate for a 2 bed social housing property. That was what we were expecting this month anyway. The council and the landlady can then come to one of their cosy arrangements about how the rest of the rent is paid.

In a Panglossian world, I will win my housing benefit appeal on Friday and stick two fingers up to them and go off and find my own property for us to live in. An unfurnished place, close to Steven’s relatives and the places he goes to during the week. A place that has Steven’s best interests at the heart of the decision making process.


From → Social Care

  1. Claire permalink

    Just had a thought – would it help if people reading your blog started petitioning Hillingden council on your behalf?

    • Possibly. But I want to hold off until after the appeal tribunal on Friday. That could change the landscape considerably.

  2. Jekyll and Hyde, smoke and mirrors – bottom line is they haven’t changed. Remember your gut feeling.

    • Which gut feeling was that Nicola? I have so many!

      • “Steven and I are nowhere in this”

        Seems clear enough to me…if they could just put aside all the process/tickbox/institutionalised disablism for a minute, they would see the remarkable young man who communicates through song and has a loving family, and maybe work with you to make his life a little bit better. It would definitely be cheaper than going through the legal processes again…

  3. blimey this is all so crazy stupid, and it’s tempting say, so Hillingdon – but maybe it’s sheer chance that I know of some local history involving another Hillingdon person in need of better support…?

  4. anonymous permalink

    Dear Mark,

    You may have already seen this.. I would just like to share this with you and your readers….


  5. Weary Mother permalink

    Mark, you are so brave.
    Like all parents of very vulnerable sons and daughters, we worry about what will happen when we are no longer here. I am an older parent, my son is middle aged. Like Hillingdon my son’s :LA has form in the way it refused/es to take on ‘learning’ from it’s huge mistakes; mistakes that continue to cost us our energy and happiness and years of our lives,,And in my son’s case years damage from neglect and worse, despite all my energy, intelligence.etc. It also took/takes my health. Yet I am terrified of this LA, and I am a well educated and usually resourceful woman. My son’s LA does not learn and it is well know for it’s ‘culture’. A number of the people, council, members and officers, who were in charge when really bad things to a lot of learning disabled people, are still in post. How can some LA’s hide so successfully in the shadows when the NHS etc is more open to scrutiny?. How do they get away with it, over and over., and how do they sleep at night?……………….

  6. p.j. aka robin banks permalink

    p.j. here.Please contact me on 0207.274.5591/07969.301964.reg’d your financial situation.
    I can put a fundraising night on in balham anytime to help.

  7. Lynne permalink

    Mark, I have spent a long time reading your blogs……I’m left feeling depressed, upset, angry, anxious, downbeat and generally just pissed right off. So I honestly have no comprehension of how you deal with everything that’s going on at this time in yours and Stevens lives… you’ve dealt with all of this total crap. How these people can have the word “care” in their job description/title is beyond belief!! The housing authority are an absolute joke, and they had no right discussing you and Steven with anyone without your knowledge and consent. Who do these people think they are?! I don’t have a child with a disability, but I have had dealings in the past and not too distant past again, with social services….and the people that they deem fit to be “looking after” someone elses kids. I cannot use the term “carers” in this incidence….as “care” was most certainly not given. I used to think that people who complained about social services, were just moaning for the sake of it or because they had failed their kids themselves, therefore social services were needed. Oh how bloody wrong was I?! I was a fool!! I hate being wrong…especially about something this huge, and to find out how wrong you are, in the way that I did, could possibly be called Karma. I was never one to criticise or judge anyone….I just didn’t know how corrupt and devious and fucked up the system was. I don’t understand why your HB was stopped, it makes no sense whatsoever….I really hope and pray that you win your appeal…and I have a feeling that you will. The way that you and Steven have been treated by the housing alone, is a disgrace….they knew full well that they wouldn’t have a house for you in time, but they left you both hanging, wondering what was going to happen and when. My son in law has a sister who has “learning disabilities”…..nothing more than that term is used when describing her, this I find strange…but what do I know. She is in her mid 20s and a really sweet girl, but she has her strict routines and any change to these routines…cause her to become anxious and constantly ask questions, until she is given an answer that she finds acceptable. She goes to a centre a few days a week….and its mixed with lots of different kinds of people with different kinds of “learning difficulties”….there have been some strange goings on in this centre, and nothing ever gets sorted out. She is very vulnerable to males…and takes any kind of attention (like a simple “hello” and a smile) as meaning that they like her and want to take her out on a date. As you can imagine, there have been a few scary times….as she insists on going to meet people sometimes, and has also disappeared from a pub, while out with her mum. On that occasion the police took some persuasion to actually try to find her….as she was judged by them as being an adult. We tried and tried to impress upon them how vulnerable she was, she was eventually found in some guys house….we still don’t know to this day, what actually happened between them. What I don’t get, is why her and her mum don’t have some sort of social work involvement….as her mum, in not only my opinion has some “learning disabilities” and doesn’t always make the right decisions regarding her daughters safety and well-being. I’m not saying that social work could perform miracles, but perhaps they could link them both in with better resources. Oh I dunno….I’m just thoroughly disillusioned by the social services and housing authorities, having problems with them myself at the moment. There’s always somebody who “forgets” to press a key or click on something….and we’re facing eviction again! It won’t happen but it doesn’t stop me from making myself sick with worry and getting very little sleep. When I think about my life and worries or concerns…..and then think about yours and Stevens….I realise that I’m having a very easy time of it now. I’ll be following your journey and praying for victory for both yourself and Steven….I’m also very much looking forward to your book. I’m sure its going to be very eye opening for lots of people… have such a great way with words and turn of phrase, I love that you swear and your sarcasm is almost as good as mine haha!! God Bless both yourself and Steven. Fight the good fight Mark….cos I know that you can win 🙂 xxx

  8. Jolanta permalink

    I think your blogs are inspiring if that is posisble when you are highlighting such injustice. Your latest blog should be read by every Director of Adult Services, politician and organisation running services in the land. i run one and you have taught me a lesson – I need to dump the jargon and tell it how it is.
    I wish our heartfelt good wishes were enough to give you/our young people a future. But they’re not, so we have to keep pushing and spreading the word. Your one blog makes up for so much rubbish spoken.

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