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Well & Truly Transitioned

August 2, 2013

For all the new followers of this blog, here is the timeline since Steven was “transitioned” into adult services:

October 2007:

Steven struggling with his last year at school. Refuses to attend – “I’m a man now”. Medication prescribed for the first time.

November 2007:

First meeting with Transition (Theres always something or other with Mr Neary) Manager. Shocked that she is suggesting residential placement.

January 2008:

Against our better judgement, Steven has four months at positive behaviour unit. Completely thrown by how we are sidelined.

May 2008:

Steven comes home with support package.

June 2008:

Incident whilst out at airport. Support worker leaves Steven unattended for at least 15 minutes. Police called and Steven arrested. No charges pressed. Social services cancel contract with support agency.

July 2008:

Unable to come up with mew support package, Steven returns to unit as a day client.

August 2008:

Steven assaulted by member of staff at unit. Cover up begins – we are not told it is a staff member – implication it was another service user. Thankfully CPS prosecute – guy found guilty.

September 2008:

New support agency found. New package in place. Lasts two weeks. Agency withdraw from contract – they cannot find swimming staff to support Steven at pools. I have to take 2 months off work – no support at all.

November 2008:

New agency found – great workers. Steven’s “community established”.

June 2009:

Transition manager informs me professionals meeting has been held and big concerns about my wife’s mental health. If things don’t change, Steven will be taken into care. “I guess you’ve got a big choice to make Mark – your wife or your son”.

August 2009:

Steven and I move to Uxbridge house.

December 2009:

I am ill and arrange for Steven to go for three days respite at his usual respite centre. A day later, transition manager moves him to positive behaviour unit. It takes a year to get him back home.

2010:

Fours DoLs are served on Steven. Social services planning on moving Steven to hospital in Wales permanently.

December 2010:

Judge terminates the DoLs – Steven free to come home immediately.

March 2011:

Contract with agency cancelled again with less than 24 hours notice. I take a month off work – no support. Contract reinstated a month later

June 2011:

Judge declares all four DoLs had been unlawful and Steven’s article 5 & 8 human rights have been breached by actions of 2010

August 2012:

Steven awarded damages – not paid out until February 2013.

September 2012:

Council stop my housing benefit. Wont consider Steven for social housing because his damages exceed their housing allocation limit. They want Steven to take over tenancy from me and use his damages to pay rent.

August 2013:

Dues to leave flat. As at 2nd August – no home available.

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From → Social Care

16 Comments
  1. Meg permalink

    Good god Mark.
    No wonder you are angry at the system. That they were so quick to take Steven into residential then couldn’t provide decent basic support is bad enough. That Steven should be expected to fund your accommodation out of the damages awarded him for the authorities appalling judgement is criminal in my book.
    I wish I could say, hand on heart that your and Steven’s story is unique, an exception, but it isn’t. I wish you both luck and peace for the future

  2. Our son is 18 and just starting on his adult journey. Four months in and he has been sectioned. He has the mind of a child yet the ‘adult’ rules prevail. Who is to say what determines his age? Physical, mental, educational, social, emotional. They are all different. I am angry for you Mark, angry for a lot of people in this situation.

  3. Emily permalink

    Agreed Meg. What Mark and Steven have had to endure is shocking and appalling. The system, truly (for want of a better word) sucks!!!!! Steven has been let down by the system and Mark as his father can only watch. Continue to shout Mark….shout loud.

  4. Sally permalink

    Mark, I am so sorry. Keep going.
    What strikes me as a fellow parent of an autistic son is that the solutions you have been offered are nonsensical, knee jerk, not thought through and not coordinated. Its simply whatever crosses their tiny minds at the time.
    In other areas like Health, at least in theory, there is a consultant who is responsible for your case who is meant to be accountable for all choices. In Learning Disability they have fragmented and parcelled out services (under the guise of value for money blah blah) so that nobody is responsible.What was once pulled together by a case manager and consultant, is now pulled together by nobody. The current awful mess also assumes carers will work unpaid as managers, payroll supervisors, social workers, etc etc with no pay and no authority forever.It is sold as having control over your child’s arrangements. If you think you really do have power, see what happens when you want something other than what’s offered.
    The other master stroke of the current Goverment is to shift all responsibility to the Local Authority who are expected to run services as they please on a reduced budget. David Cameron,when reluctantly made to hear of various injustices towards the disabled expresses vague empathy but makes it clear that its the responsibility of whichever local authority it is-the buck goes no further.
    Example:in our situation,the Learning Disability team had a cut off point of 70 IQ points.
    Our Borough didn’t then employ anybody who was qualified to do an IQ test.
    My son’s estimate was 74 points. LD refused him. We were told to go to social services, social services said they are meant to be a short term intervention, and had no resources for the disabled.Each team insisted it was the other’s job.I had to leave my work.
    He is now under the LD team after 2 years of arguing. My point is that anybody not in the system would assume it was very straightforward to get registered and get help, because on paper its all there-just like Steven’s housing.
    Here’s an idea-what about a TV show in which the most obstructive and smug housing/CAHMS staff are required to live with someone with autism for a few months and complete a few tasks-say, arrange support staff, get educational help, argue about PIP.
    Parents of the disabled will pretend to be social services staff ,and be especially unehlpful shifty, patronising and go for lengthy breaks.(Any volunteers for this?)

  5. Mark Grainger permalink

    Mark – as the parent of a 15-year old severely autistic son, your story of Steven and yours battle with the ineptitude and “jobsworth” attitude of the social care system fills me with with dread for my
    possible future situation. It’s only knowing that people have been through this battle before that makes me feel that I’m not on my own with my situation. I can only hope that those with a supposed
    interest in your situation get their thumbs out of their arses and provide you with a proper house to
    bring Steven up in. Love the blog by the way. Keep fighting the fight Mark.

  6. Nichola permalink

    Thank you for the timeline, Mark. I was up to date on your blog to April 2012 having caused myself a numb bum reading everything in one sitting on Monday night. Two things leap out about the inhumanity of the system – first, families being sidelined and second, the tyranny of market forces in the provision of care.

    My sister could only afford a live-in support worker with the DP award, which was totally inappropriate as the scope for neglect and indifference was vast. The second agency, which we fought to get funding for, was a specialised LD outfit – again, it was incapable of providing suitable people and those it did employ carved up the package to meet their needs rather than my sister’s.

    I don’t want to bang on about our battles, my point is that we are forced into becoming employers on top of everything else but when it comes to exercising any of the rights of an employer, the system kicks in and processes mangle the quest to change things. The LD agency took exception to my close monitoring of the ‘service’ they provided. I read and questioned everything. The next time I was at the house all the records had been locked away! As an employer I was denied access – in the family home – to information about medication, time sheets, rotas, logs and household expenditure.

    The biggest thing though, was fear. Fear, as you have expressed, that I was regarded as a problem and that other ‘housing options’ (shared lives, residential) might have to be considered if I upset the myriad players in the care industry.

    Meanwhile, nothing changes and no lessons have been learned. Those unaccountable jobsworths at Hillingdon are causing unimaginable distress and damage to Steven and you. Mark, you know all there is to know and how to tackle the state behemoths, but If you think I can do anything to help, no matter how small, please don’t hesitate.

  7. Bill permalink

    I very rarely participate on online discussions, but after reading the BBC webpage mention, I started watching Mark’s blog. You can’t help but become angry at the way forms, tickboxes, systems and a few jumped up ‘senior’ individuals have become the ‘process’ that we are expected to accept as the best way to handle these things. This is the model in not just social services, but in virtually every government or local authority department that I come across.

    What Mark has done here is fantastic. Simply by documenting his own and his son’s story and experience in real, heartfelt words, he has brought the eyes of a huge number of real people onto the way these organisations structure and manage themselves, Often, the focus of much of the management of these organisations and departments has moved completely off what should be the main concerns, and has become ever more self serving. If they were businesses, no real ‘customers’ would go near them with a bargepole. (Note: I’m not having a go at the regular staff, there are some great people doing a thankless task that many of us simply couldn’t do, but that soon gets ‘processed’ out of them)

    One of the previous posters asked if the departments involved were reading this blog – you bet they are. So perhaps they will let their line managers know that many eyes are watching, and are appalled by what they are seeing. Yes, by sticking to the process, the department managers won’t believe that they have done anything wrong. I would suggest that they have a long hard think, and wonder whether they have simply missed the point.

    So, Mark and Steven, good luck to you both in your own fight. What you have done in support of your son is fantastic.

    Oh, just one more thing. Fantastic wish list! We could all learn a bit from that.

  8. Gill permalink

    Thank you for the timeline Mark, I hadn’t realised the ridiculous and heartless suggestion from the benefit office.
    I expect you have already gone down this road, but have you discussed the money situation with a solicitor? My father set up a trust fund for my brother’s inheritance before he died, so that my brother’s money would not be eked away by authorities in just such a manner.
    I’m no expert, but so far, it seems to be working.

  9. Gill permalink

    Btw, I will be among the many people from your blog followers thinking of you today

  10. Hi I think yours is the famous high court case that set a precedent and the judge said your son was entitled to a “full family life”. I have had problems over my daughter (which can’t be detailed here) but she distressingly died before I could do anything.

  11. Weary Mother permalink

    The film ‘One flew over the cuckoo nest’ was on TV the other night. We all know the story; an inspirational man goes into the mental health system mentally healthy and is destroyed by blinkered people and a cruel system, just for seeing the patients as normal men and challenging their/it’s stupidity and inhumanity. See any parallels here in the way we parents are treated.

    Every time a horrible injustice or supreme incompetence is uncovered in Public systems, there is shocked horror and promises of ‘learning from our mistakes’. No one is ever held responsible above the level of ‘shop floor’. And as Mark has found when you challenge this system, your card is well and truly marked. Worse your disabled child ‘s card is well and truly marked. So we become terrified of raising our head over the parapet ever again. Mark you are a brave and inspirational man.

  12. I agree with Weary Mother (one to another) – Mark you are inspirational and you have done such a lot to bring the plight of families of learning disabled people to the attention of the public. Since the argument “A full family life” was put forward it has been used in lots of cases with success I think. It was one we were hoping to use but events took over….

  13. david permalink

    The propaganda here on pg 2 is shocking: http://www.hillingdon.gov.uk/media.jsp?mediaid=28926&filetype=pdf

    Debbie lost her day centre but that’s okay, she can go into the community and walk dogs. For free. Lets hope she doesn’t have challenging behaviour, autism, incontinence, any physical disabilities or need other 1:1/2:1 support otherwise she is buggered pardon the French.

    http://hillingdonlink.org.uk/wp-content/uploads/downloads/2011/12/Hillingdon-LINk-Response-to-Transforming-Adult-Social-Care-2011.pdf

    The above tells a different story.

    I have a mild ASD and I am glad that when I turned 18 I lost all my support. I’d rather sit at home bored at the weekends than go through the nonsense that you and Steven have to go through. It makes me count my blessings that I am fairly “non-disabled”; I just have problems making friends and “accessing the community” for leisure. Not that there is any leisure facilities anyway! I’m not from Hillingdon, I’m from the land of Haggis and Irn Bru (and deep-frying everything) 😉

    PS: I have been following your blog since Feb this year (subscribed by RSS and it sends updates directly to my email client Thunderbird so I never miss out!). I first heard your story on the BBC news website when the judgement had been delivered and Steven freed from the concentration camp. Hopefully I’ll also sometime soon get around to buying your books as they’ll be a good read as you have a very good writing style; it’s unique, honest and humorous but serious

    • David – that is a stunning find. I have never heard of Hillingdon Link before. Reading the service user/parent’s comment’s is very distressing as you know that nothing positive whatever will come from them. The first link makes me want to vomit. Thanks for the links. Mark

      • david permalink

        It seems to me that the consultation process was run by the Mafia; the boss makes the decision and the rest have to hear and obey. This ITV London Tonight clip further backs that up: http://www.youtube.com/watch?v=oGtUJdyIhEk

        No consultation, no letters, folk just pushed out into the community completely regardless of their needs. That statement at the end from the council, that’s got all the carespeak lingo that there ever was contrived all in one sentence. It’s full of smoke and mirrors. It’s absurd, but totally expected and nauseating. It’s like the sick and twisted meeting of Lewis Carrol and George Orwell as carers and the cared-for traipse off on a merry jaunt through a nightmare world where black is white and nothing is what it seems.

        I really hope that your housing problems are sorted out finally very soon and that Steven (and you!) aren’t distressed any more than you already have been with the don’t-care in the community system.

        David

    • Sally permalink

      David,I can’t believe the revolting propaganda in the first link you found!
      It would be good to ask Hilingdon to produce the happy individuals quoted-the parent who now thinks the day centre closure was just fine as now “every day’s a holiday”! Bet they made it up.
      I am desperate for there to be day centres and sheltered employment for my son when the time comes. He needs enjoyable, meaningful activity with friends who are at about his level of ability and kind workers who are trained and supervised, in a familiar place
      .I don’t want him to sit in shopping malls with bored workers. I don’t want to have him at home for all but a couple of hours every day for the next 60 years-and to have to staff and plan those couple of hours. It is revolting that the council are selling the closure of the day centres (the propaganda doesn’t say that the girl isn’t going to the centre any more because they’ve shut it!) as introducing choice. We’ve been here so often. if we have choice, can we choose for the day centre to remain? No?
      I defy any parent of a disabled child to read the first link David gives without throwing up in disgust.

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