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Knife Edge Decisions

December 20, 2014

It will be four years ago tomorrow that I sat in the Court of Protection and heard Justice Mostyn announce that Steven could come home immediately, ending 359 days of an illegal deprivation of his liberty. Somedays it feels like five minutes ago; other days it feels like a lifetime ago.

Today, I received a complimentary copy of the latest edition of Autism Eye. They covered our case back then and today saw a brilliant article that introduced the LBBill and included Steven’s story as well as Josh Wills and Claire Dyer. It also had great statements from Simon Duffy & Steve Broach. Seeing the story laid bare again in a few paragraphs brought home something that I’m aware of everyday and something that hits me in the gut every time I read about a similar story to Steven’s of a young man or woman being wrenched from their home and being dumped in an assessment and treatment unit, hundreds of miles from their homes. The gut puncher is how fragile everyone with a learning disability is to these grotesque State interventions. And once done, how neigh impossible it is to retrieve the situation and bring the person back home. This stuff is, of course, the meat of the LBBill and is, I guess, what drives most of the people pledging their support to the Bill.

It absolutely terrifies me how unvalued the life of a learning disabled person is. At best, a couple of multi disciplinary team meetings will normally be all that it takes to stop a person’s life in their tracks and send them to one of their worst nightmares. In the article, Duffy talks about the timing of these actions. I’ve written about it many times before but nobody within the system seems to want to acknowledge its truth. Difficulties often arise during late adolescence, at a time of change or impending change from leaving school, common hormonal surges at this time (regardless of a learning disability) and perhaps worst of all, the “transition” from children’s services to adult services. Nothing can prepare you (person or their family) for the barrenness of that experience. Everything you believed was safe about your family life becomes unsafe overnight. From being the main (often only) person making best interests decisions for your child, you suddenly become a peripheral figure in the decision making process, if you are included at all. The history and knowledge of the previous eighteen years counts for a big fat zero. And when you are feeling at your most shaky, you will be judged in a way that you have never experienced before.

That it is the backdrop to these horrendous life changing decisions. One day, at your lowest and most exhausted, a professional with pitch up and tell you that the routines you provide to help your autistic son manage life is restricting his development. You are told that, at 18, he has to become more independent. And even though six months earlier you were attending a training event arranged by the school about understanding meltdowns, you are now told by adult services that your son is being “controlling” and that the meltdowns (although they don’t acknowledge them by name) are a learned behaviour to either get out of something or get his own way. But do not despair parent because we have the answer – an unspecified period of time in an assessment and treatment unit receiving a rigid model of positive behaviour support and as many anti-psychotics as Boots can spare.

These knife edge decisions really stick the knife in. Like a social care Patrick Bateman, the knife action is quick, clean and permanently wounding. The huge chorus of professionals that have suddenly become involved don’t give a fuck. In fact, they will probably be quite satisfied by their actions. The commissioners have done a deal for the cheapest service they could find, sent the person packing and probably won’t have anything to do with the removed person ever again. A name crossed off the list. The providers are licking their lips at the thought of a lucrative, long term block contract and as they won’t be scrutinised, they can do damn well whatever they want. Individual staff may get bonuses and/or awards for hitting the right outcome targets. The charities can keep up their profile be every now and again, exclaiming how unacceptable all this is.

A friend was telling me the other day about her 18 year old son. He doesn’t have a learning disability. He is lost – turned down for university, dumped by his girlfriend, and struggling to deal with the inevitable loss of a large section of his mates now that he has left school. He’s been drinking a bit too much. He’s got himself into a couple of fights. But he and the family will be left to work through this existential crisis. He won’t be taken away to Northampton (he lives in Devon) to an assessment and treatment unit. He won’t be forced to embark on a positive behaviour programme. If he’s unlucky, his GP may give him a Diazepam habit. It will all be very different to the learning disabled person because my friend’s son isn’t the cash cow that my son is and his lack of disability will keep the power driven from his door. It’s not very fair.

Steven is a ball of excitement and anxiety at the moment as he awaits Thursday. All his thoughts are geared to his Christmas morning bath (with “some new bubbles and squirty”), Then it’s a new Mr Bean dvd, a Bjork CD and a Basil Fawlty surprise. In amongst all this will be turkey, trifle, Cheeselets and Maltesers. This Christmas, 3500 learning disabled person won’t be having any of that. Their families will be trekking hundreds of miles across the country on Christmas Day for an hour long visit that may be cancelled at the last minute if the person has been “too challenging”. In 2010, I was having to plan how to get to Wales on Christmas Day if the court ruled in the council’s favour. The visit would have been cut short and I would have been asked to leave because Steven wouldn’t have been able to cope with the loss of everything he knows about Christmas and would have meltdown.

In 2015, let’s all make the LBBill become a reality. Let’s reclaim some of the power and blow away the concept that learning disabled people aren’t quite human and that gives the State carte blanche to do whatever they like.

I’m in. Are you?


From → Social Care

  1. I’m lost in admiration, lost for words, except to say all power to you and others like you. I want to shout your stories from the roof tops and make others listen. Change must happen. With very best wishes to you and Steven.

  2. Rebecca permalink

    Would be possible for you to do a post outlining practical steps an ordinary person can take to move this bill forward? Maybe in a “if you have 5 minutes, do this; if you have 30 minutes, do this” etc format . Thanks.

  3. Weary Mother permalink

    This year end things are really really bad for adult people with learning disabilities. Whether they live at home, in ‘so called (un) ‘supported’ living or locked away in these shameful new age bins. We used to hear the phrase ‘granny farming’ in the past, but never was there such a bonanza to get rich quick on this seam of powerlessness and vulnerability.

    This last year for my son and I, has been one long trail from meeting to meeting often accompanied by a solicitor, to draining meetings with LA. Then the long long empty weeks, months filled with stress/crises and the deafening nil response, from LA. Without our brave dogged solicitor I believe my son would be dead.

    Our care manager has done her very best, but has been unavailable for much of the year, from sickness, I assume. We are not the only casualties.

    Over the last three years our young solicitor has helped things to become, for moment to moment, less dangerous. But it has been a grinding, ‘who will blink first’ situation with ‘letters before claim’ having to be used before any, and always temporary, improvement .

    You relate so movingly yours and Stevens shared abuse; a history that is always with you both. Our solicitor understands my anger and frustration but says to achieve, we must ‘move on from..history’. She is really excellent, and half seriously pleads me to ‘be nice’ in our LA meetings.

    After a decade of abuse the Ombudsman finding for us and LA eventually admitting all, is history. Done and dusted. But my destroyed son, is…..and always will be…destroyed … this ‘history’.

    And nothing has changed. We still have the too real prospect of the next dodgy assessment… the next heartless jobs worth that can take it all back. …and we will have to start all over..again.

    I look at my increasingly vulnerable son, and I ache for him and….. I continue to fight for him.

    For us .NONE OF IT IS HISTORY it is all ……now ……….

  4. Eloquently said Mark, though worrying that so many don’t have a Mark to fight & speak out – which makes the #LBBill essential – so I’m in. Are the rest of you? We need all people’s rights really being upheld – professionals under the law should involve families in major decisions. The flaw seems to be the inclusion of people solely by virtue of a learning disability/autism in the Mental Health Act such that a psychiatrist and AMHP can section them even though they don’t know them. Then action seems to run out as they then can’t find a ‘treatment’. The disgust we all feel to find that the ‘treatment’ of Stephanie Bincliffe who died was being “treated” with years of seclusion, lack of exercise and fed to death it seems, let alone of Connor being left in the bath for hours or of Chris in Calderstones restrained face down, his mother imagines in the mud which is the nearest he has to a garden.. I wonder about the accountability of the MH Tribunal and the Managers’ meetings – are they equipped with the right knowledge and skills to judge whether people’s mental health needs are indeed being met in the least restrictive way as the law demands? How can this be true when we know with the right help and support, the vast majority of people currently incarcerated in assessment and treatment units can be supported and get the right “treatment” in the community with people who care (and there are providers who care and work well with people who have challenged just as much) and who have the skills and work WITH families. This all feels like a function of people – professionals – who fail to care, fail to get past behaviour, fail to understand it or even try, fail to listen to families and people who do, fail to have any humility about the limits of their professional skills, fail to know what’s possible in the community – and worryingly don’t have community experience being incarcerated themselves in the institution. But one of then issues must be them being unwilling to let go of the power they have in such a place within the comfort of justification of the legal framework that over-relies on their judgement – I wonder if many of them would survive outside in the community? We need action urgently…. so all please support #LBBill and #JusticeforLB and join your voices to those in the LDA trying to bring us all together to have a single more powerful voice to DEMAND our government and the next one deals with this. surely we should have an amazing electoral power if we all joined our voices? We must also let the public who don’t know of the shocking facts of what is being done to people’s families. Stephanie’s treatment at least would be prosecuted if her family had done this to her!

  5. You have my deepest respect and admiration how can we support putting an end to this cruel and inhuman treatment? Wishing you and your family the very best Christmas and New Year x

  6. I’ve been a care manager of people with learning disabilities for 3 years. All of the people and families I work with…(and I stress…work with)…have been happy with the support they receive in their supported accommodation. Caring for people is not a money maker for the local authority, its one of the biggest expenses for a local authority, so in my experience if a family are managing and are fit and healthy, the local authority are usually happy for the person to remain in the family home. That’s my experience anyway. Though there is that flip side of families who believe they are acting in their loved one’s best interest but are actually causing them unintentional harm or disadvantage. At the centre of this is a person being argued over. Obviously I cannot comment on your experience as I don’t know all of the details and I know that not all services/care managers/authorities/”professionals” are the same or have the same beliefs; but I am a massive advocate of carers and do my best to challenge professional practice that I disagree with. I hope that if I ever find myself in a situation of family vs local authority that I am able to put the person in the centre of it all and do what is right. The knowledge and experience that families/carers have is vital to the person’s well being after all. Best wishes for the future.

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