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What Do Points Make?

June 18, 2016

Completely out of the blue, a potentially suitable house for Steven came up on the council’s property search website on Thursday. It’s the first one since the first week in February.

I got into an immediate flap & heard myself saying to one of the support workers, “but I’m not sure I know the rules of the game”. Because that’s what it is, a game. A very cruel game. This is how it works.

Anyone can make a bid, regardless of your banding. Steven is a Band B! That’s better than a C but not as good as an A. The bidding game starts at 1pm on Thursdays and closes at 4pm the following Monday. Your bid isn’t acknowledged, so you have no idea if you’ve bid correctly. I bid by text first. But panicking that it hadn’t registered, I did a phone bid too. Oh blimey – has my second bid cancelled out my first bid. Will I be punished for over bidding?

Sometime on Tuesday, the bidders are grouped off. The Top Five and The Next Five. If you’re outside the top ten, you don’t hear a dicky bird. The Top Five are invited to a viewing. The Next Five sit and wait and hope that one of the Top Five drop out. It’s a false hope. If you’re number 8, you might as well be number 888. You haven’t got a cat in Hell’s chance of being successful. All you can do is sit at home and stick pins in models of numbers one to seven. If the Top Five all decide they like the place, then a Panel from the housing department decide your fate. You can make a supporting statement as to why you should be chosen. Rather in the same way that Big Brother nominees can appeal to us not to evict them.

If you’re chosen as the winner (” You can’t beat a bit of Bully”), you have to move fast. You sign the contract and get the keys and start being charged rent the next day. Decorating? Utilities? Removal van. All got to be organised in a day.

Coincidentally we’ve already got a meeting with housing and adult social care arranged for Tuesday. Steven’s fabulous advocate is coming and will be pushing their Care Act duties. The timing is good. If we’re number four, the meeting could move us from out of the medals into the gold medal position. Often in game shows, the person lying last going into the final round comes through to win – “It’s the Double Money round”.

At the moment I have no real idea if the house is suitable. All I know is that it’s got 2 bedrooms (tick) and the street. It’s about a mile from where Steven currently lives. I’ve been in pointless planning mode since Thursday. “Buggar. There’s no fish and chip shop close by. Have to buy a bike so the support worker can ride to The Golden Plaice on Thursday evenings”. ” Shall it be blinds or curtains?” “What sort of packing will I need for the Mr Bean cardboard cut out?”

Pointless pondering because we may be number 7. Or number 215. Or I may have done my bid wrong. Or the Head of Panel may have got out of the wrong side of bed that day.

And I haven’t told Steven yet as I don’t want to cause him unnecessary anxiety. But on Tuesday, I may have to tell him that we’ll be moving by the end of the week!

“Steven Neary – come on down”.


From → Social Care

  1. Mary permalink

    Location & surroundings are usually left out of the picture in offers of social housing…but so important …after all its how most people chose their house, alongside the what actual building is like. Is this with a Housing Association…in theory they can be more creative/adaptable? Seems mad that its all so rushed when there’s so much else to consider, and you are doing most of it, alongside being the main carer with oversight…

  2. Moving in straight away? What about reasonable adjustments, transition, planning? Request housing benefit to cover the transition period, in Stephen’s best interest to make the move as smooth and successful as it can be..but good luck with the bidding process first!

    • better to grab the keys, an offer is such a rarity. I assisted someone who accepted an offer/keys in Dec 15 they waited as instructed patiently for adult social and community mental health to orchestrate assistance .None materialized , both agencies claiming the other had lead responsibility and that the move was a work in progress for weeks. The person moved chaotically in March 16 when they were advised by adult social to go it alone . Only the housing department offered support by way of keeping the property open to them for so long and allowing discretionary rent payments whist two properties were ‘ occupied ‘. It is a case of getting yourself to the front of the queue and then getting in quick sharp.

  3. lIA permalink

    Hahaha Mark. Bullet Pointing is not a bad idea. X

  4. Jsyne knight permalink

    Isn’t is the mist diabolical of systems so well exposed by you
    I think of that poor homeless guy in the street and know why he’s still there
    Got to go through one hell of a screening before he even gets the privilege to bud
    People don’t realise Mark till they have to do it
    Well if they turn you down that’s another story not for here at the moment

  5. So if a LD/autistic want to live in his/her own home, they need a house/flat , this cannot be bought by them or apparently even their parents in view of present problems with Deputyships etc.

    As Shirley attests even if they or their parents had the money to buy,

    So they are left at the mercy of non-existent/ scarce social housing of any type and location they can get,?

    Yet they cannot have their own home within their parents home, or an extension or in the garden.

    Why ? To aid away from family at 18 living ?

    • simone permalink

      Flameross – why can not parents buy their adult child a house? – Why does deputyship make a difference?

      • There’s no reason at all. I’d do it like a shot if I could afford it. Would remove all the LA bureaucratic hurdles in an instant.

      • Because without it they cannot decide where their child lives if he is incapable. And to get deputyship parents need approval which they are rarely getting as LA HSC want to maintain control so their commissioned care services are used ,so that profit can be made and control over services maintained.

  6. Probably worth writing yourself and also asking Steven’s advocate to write about Stevens situation and his urgent need of a new home. Also local connection should help. Also follow up phone calls to housing manager to make sure he has all the info you send. I do hope Steven’s bid is successful.

  7. simone permalink

    Accessible housing came available for a disabled friend as a result of disabled people squatting three days by occupying an unused council property backed by a campaign that included articles being published in the national housing press – the council soon got its “ass” in gear! I even had the head of housing contact me (outside London) as I was handling the press whilst local activists took action…… I see Nicky’s campaign for housing as been posted onto DPAC’s website Disabled People Against Cuts campaign (took over the Disabled Peoples Direct Action Network). Other forms of campaigning maybe needed to get beactratrics assess in gear! Good luck Mark and Steven.

  8. simone permalink

    Fanmoress I thought it was the court of protection NOT the LA decides on Deputyship – Why would not the court not approve someone as Deputy if she or he decides to buy a home for their disabled son or daughter. And even if you do buy the home there is no guarantee that the LA will pay for the PA support that will enable the person to live there. It seems that increasingly supported living includes both accommodation and support workers – I see there is a number of Housing Associations as well as LD charities that are busy bundling packages together that includes accommodation and support staff. So therefore making it even harder for people with LDs to live in a non rented home regardless who brought it, parents, child etc

  9. Shirley Buckley permalink

    Please everyone note what Finola is saying. Since 2003 my plans were to buy Martin his own home, so he had security of tenure. Simple. Martin has Lennox Gastaut syndrome epilepsy. He needs 24/7 care from trained and competent carers. The LA have to write the Care Plan. I can not move Martin into his home without a care plan. The LA then declare that Martin lacks capacity, so he cannot decide that he wants to live in his own home. Martin is then declared to lack capacityby the Court of Protection. The CoP then declares that Martin lacks capacity to decide on his contact with me, so the LA can decide this using “best interests”. They continually threaten me with stopping all contact with Martin if I dont do what they say. In CoP from 2006 until 2014. Judge declares that it is in Martin’s best interests to stay in residential care home in Wales( I live in Solihull) permanently with no reviews. Because the judge states Martin lacks capacity the OS represents Martin, and without even talking to Martin, states that Martin would be upset by reviews (the OS has never met Martin). Martin has stated categorically, with full capacity, and in writing, that he wants to live in ahis own home, in Warwickshire, with a team from Allied Health Care looking after him. Martin asked me to be his deputy as he had been advised by the CoP that he was allowed to have one (actually as he has capacity he does not need one) The Court rejected my application (in the meantime the Court lost all the papers and it took me months of struggle until they found them), and turned down my appeal. All judgments in the public domain. READ THIS AND BE WARNED. Finola can give you all the legal side if this – AS SOON AS YOUR CHILD HAS BEEN DECLARED TO LACK CAPACITY YOU LOSE ALL YOUR RIGHTS.

    • Care Plan
      What is care and support planning? Everyone’s needs for care and support are different, and needs can be met in many different ways.
      The care and support planning process is there to help decide the best way to meet the person’s needs. It considers a number of different things, such as what needs the person has, what they want to achieve, what they can do by themselves or with the support they already have, and what types of care and support might be available to help them in the local area.
      The planning process takes place with the local authority and the person, any carer they have and any other person they ask the authority to involve. Where the person lacks the capacity to ask, any person who appears to the authority to be interested in the adult’s welfare should be involved. This process will decide how to meet the needs of the person, and the local authority must do everything it reasonably can to reach agreement with the person as to how their needs should be met.
      The local authority must produce a plan that sets out the detail of what was agreed.
      This is where it all started to go wrong.
      The Law informs opinion. You just have to make sure that opinion is correct. Otherwise from here it snowballs and opinion informs opinion, the mental capacity opinion is in complete in error and therefore the CoP ruling would be unsafe and should thrown out.

  10. everything crossed for Steven, a house with a small garden area offers great potential for holidaying at home if that is ever a preferred option and stairs are great exercise. So much improvement to health and happiness can be achieved with a permanent home which is something some housing managers fully appreciate and actively support.

    • if Steven/yourself can make a statement/presentation illustrating that the built environment of the new property offers Steven greater choice and control over his immediate surroundings it may add a bonus ball to Steven’s B priority. Really go for it, an extra toilet for exclusive use may be a preference , private space to have over visitors ( other than those paid to support ) Kitchen space if cooking is enjoyed but needs support. Anything important to Steven that nudges that B.

  11. Shirley is probably typical, of the many parents, who have tried to fight the system for years and got no where.

    As she states, and is a painful witness to, the court only rarely will give Deputyship to a parent or family member, and if they do, it can be withdrawn at any time, and is reviewed in any event annually.

    The government, courts, LA HSCTs act with one purpose, and this was the reason, the MCA was drafted over 10 years ago, and that is to revolutionise Adult Social Services, so that all disabled/disordered, are placed totally in the residential care and control of private bodies chosen by the state, and subject to whatever services they are given..

    At 18 parents lose all control over what happens to their children, and if their children are declared,, as is routinely happening, illegally on blanket continuing, retrospective capacity assessments, to be incapable, they also have no rights, as to who they see, where they live, or their care and medication etc.

    Even if they have signed a Lasting Power of Attorney in favour of their parents making such decisions, should they become incapable, this will be voided by COP retrospectively, on the grounds of their incapacity at the time they signed it.

    All this is illegal, as the MCA provides capacity assessments and capacity, are time and decision specific ie only relate to a specific decision, that needs to be made without delay in a persons best interests, if a person has been found incapable of making it at that time, after all practical steps have been taken to assist him to make it.

    • Shirley Buckley permalink

      Finola Absolutely everything in your above reply is correct Everything has happened to Martin. He is trapped. Way back in the days of “Valuing people” we had it all set up with a Housing Trust in Oxfordshire, Martin had viewed the house – no Care Plan, no house. I know personally of cases where the deputyship is withdrawn specifically because it gives the deputy too much power. Today has been absolute hell plus 100%. The LA have decided Martin is not eligible for Continuing Healthcare, in spite of the fact that from 2008 to 2011 they stated categorically in Court that he was eligible, and threatened Bucks with a judicial review if they refused.

      • Once your disabled/epileptic/autistic/ unable to protect themselves child, reaches 18, their parents lose all rights over their own child, and even worse, the child loses all rights, because a court illegally declares they are forever ‘incapable’.

        They become legally, a non person ie they lose legal competency.

        You are right Shirley, this is permanent hell for those who need care, they have no freedom for life, and their parents. They are lynched, as is their property and there appears no accountability.

        And, where you have no accountability we are in the wild west, and anything can be done to the vulnerable.

        Who will protect them, if their parents cannot ?.

        And how did all the many charities for years well funded, allow this atrocity to happen.

        I know of no other country in the world where it does.

  12. There used to be a way of getting a mortgage based on benefits through an organisation called My Safe Home. the house is ‘bought’ by the person, not the parent. Also there are ways of setting up trusts to share ownership…you probably already know all about this however. There are very small specialist HAs too…one near my sister’s place helps families set up homes for theur relatives & might be able to advise

  13. Shirley Buckley permalink

    Mark I will willingly lend, or give, you £100,000 one hundred thousand pounds to buy a house for Steven. Read the above. At one time I wanted to buy through a Trust four flats for inividuals with epilepsy and their carers. No co-operation from the LA, only questioned my financial status.

  14. how about contacting Meath Epilepsy Trust…for ideas/advice…have personal contact. They are very innovative…

    • Shirley Buckley permalink

      I know Meath from way back around 2000. A really lovely dedicated place. But this is residential care, I don’t know if they do supported living now, but I believe it would only be local if they do. Correct me if I am wrong

  15. They do Supported Living too, and offer very good training for care professionals/others regarding management of/living with epilepsy. Inspiring organisation. Their CEO used to be OPs Director with charity which used to run my sister’s place. Gd organisations need inspired leadership…and he knows it from both sides, also as parent. Mentioned them as I’m pretty sure they’d give advice. Also as one of only 2 specialist places in UK for ppl with severe epilepsy & Learning disabilities, do take non local people…

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