Knife Edge Decisions
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