Got My Eye On You

I’ve reached the conclusion that as part of the deal of being a carer is that you find yourself showing alarming traits of fear and suspicion. I don’t believe that caring automatically sets off a paranoid state, so what is behind this? My feeling is that everytime I read or hear a carer displaying fear or suspicion, they seem totally justified in feeling that way.

Two stories have popped up for me over the past couple of days.

Firstly, I was reading a post from a carer that I have an awful lot of respect for. She had been out Christmas shopping with her father, who she is the financial deputy of. The father wanted to get her a present. My friend, who manages all his money became very nervous about being party to buying a present for herself out of his money, even though he was asking her to do so. Her mind immediately leapt to what would the Office of the Public Guardian make of this. I understand this all too well. Last year was the first time I was inspected after becoming Steven’s property and affairs deputy. He had received his damages from Hillingdon and also moved into his own property during the year. I had spent a few thousand pounds furnishing the house for him. When I cam to fill in the official forms, I became very anxious. What would the official view be of this expenditure? Would they say that I had been wasting his money? Worse, would they say that I had been misappropriating his money? I ended up handing in a five page report, with a detailed explanation for each thing that I had brought. The inspection went well but as I sit at my desk, typing this blog, this year’s report is lying beside me. The same anxiety rises up. How will it be viewed that I paid for Steven’s holiday? Will I be told off for spending £100 to replace the support worker’s glasses that Steven broke? Stupid fears but that’s what happens when you become so answerable to the State.

The other reminder of the carer’s state came when I was reading some of the feedback for the #LBBill. There is a constant theme running through most of the feedback on each of the clauses. People want watertight definitions of everything. What is a home? What is a community? What does residential mean? How do you define a carer? I understand totally where this comes from. Everyone commenting has at some point in their caring life fallen foul of the State ignoring, manipulating or abusing the law for their own ends. There is a lot of finger pointing in the social care world but nothing more threatening than when the State starts wagging its finger at the carer. Most people who have been on the receiving end of a Fairer Access to Care Services assessment, or have been through a RAS, or have been subject to the Fairer Charging Policy will want as little wriggle room for the State as possible. All these processes seem to have as a starting point: how do we get out of this rather than how do we make this work.

18 months ago the BBC published a piece I wrote about the differences between my life and Steven’s life under the spotlight of the social care world. I can add another to my list. Next week, I’ve got to go and buy a cooker for my flat. Nobody will scrutinise this event. But if I buy Steven the new Take That CD, I will have to demonstrate that I have used his money to do so, in his best interests.

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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?

When Is A Care Plan Not a Care Plan?

Rather unexpectedly, I felt that today might be a good day to reintroduce an occasional feature of this blog – the Saturday Riddle. Previous riddles have been tongue in cheek affairs but this one is deadly serious, prompted by one of the most upsetting news stories of the year:

The Riddle is:

Q: When is a care plan not a care plan?

A: When it’s a guideline.

Yesterday, on Radio Oxford, the formidable Phil Gayle interviewed Phil Aubrey Harris who is Southern Health’s director of social care. The interview focused on the inquest findings the day before into the death of Nico Reed, a young man who died in 2012 in one of Southern Health’s supported living services. Nico’s care plan stated that he needed 20 minute observations as several physical issues he had could put his life in danger. On the day of Nico’s death, there was one support worker attending to 4 severely disabled people and the records showed that there had been a gap of between 45 minutes to an hour between Nico’s observations. Mr Aubrey Harris repeatedly talked about “with hindsight” but Mr Gayle stuck to his guns and continually pointed out that hindsight wasn’t needed – the care plan was quite clear. It was at this point, that the Sloven man threw in the audacious idea that a “care plan is just a guide”.

A care plan is just a guide????????????

No it isn’t Mr Aubrey Harris. A care plan, done well, should be a very clear statement of the care someone needs. And when specific figures are quoted in a care plan, they are there for a reason. Someone has decided that an exact time needs to be given to the specific issue that the plan is addressing.

You might accuse Mr Aubrey Harris of wriggling. You might say that he is covering his organisation’s arse. I might say that he is perpetuating the abuse that led to Nico’s death. A company commissioned and paid an awful lot of money to provide care reveals once again that their reputation comes kilometres before the needs of their “customers” and the feelings of the people left bereaved.

Where does this “guidelines” bollocks end? Supposing you have been assessed as needing 24 hour care and that is subsequently written into your care plan. The commissioning service will pay the provider for providing 24 hour care. But in your world, this is just a guideline and you decide the person can be supported on 16 hours care per day. They are left alone for the other 8 hours. Too off the wall? For me, it’s the logical progression of providers deciding that an assessed care plan is open to flexibility.

I’m being kind. The statement from Mr Aubrey Harris has nothing to do with flexibility. It is about cutting costs by cutting corners. They put in a tender to win the contract and obviously set their profit margins too low (for their board). The tender was accepted and then someone must have nudged them and told them that the shareholders won’t be too chuffed to get such a poor reward. I suspect the viral quality team got together to decide how they could turn this problematic situation around. And inevitably, the end user carries the can.

I’m struggling to get my head around the implications of “guidelinegate”. In all the discussions about #LBBill, I’ve always assumed that, although the care providers make huge profits at the expense of our family members, they were at least providing the care they were commissioned to provide. Now that idea has gone of out of the window. Everything can change when in the hands of greedy providers and care plans aren’t worth the paper they’re written on.

The commissioners mustn’t get off lightly either. Do they just sign the contract, hand over the dosh and then retire into the night? Imagine I commission a window cleaner to do upstairs and downstairs of my house at £20 a time. The window cleaner sees this contract as just a guide, cuts costs by not having a ladder and just cleans the downstairs windows. I would see it as my job as his commissioner to whomp his backside and would probably cancel our contract on the spot.

Another galling aspect of all this is that if the boot was on the other foot, there is no way that families would be able to get away with providing such awful care and going against written care plans. When Steven was in the Unit, I’m not sure if he had a care plan – I certainly wasn’t part of drawing up one. He had umpteen “behaviour management plans” and a big part of the council’s case in court is that they didn’t believe I would follow these behaviour plans. I would have been castigated if I’d suggested that these meticulous positive behaviour plans were just a guideline. But then families are not part of the gang.

There is so much else about the coroner’s verdict that chills to the bone. Southern Health took an executive decision that Nico’s family would not be told the nature of his death for over a year. In fact, even then, they found out by accident – not through the candour or humanity of the provider.

It also sets off enormous alarm bells about the realities of supported living. So popular at the moment but so at risk of being abused by both the commissioners and the providers. A prime vehicle for the cost cutters and the profit trouserers.

There has been lots of twitter discussion about the radio interview and for most people, it is clear that Mr Aubrey Harris is first and foremost a businessman and showed very little understanding of what he was being asked about. We shouldn’t be surprised. Care is big business. It’s not about care. Nico was a cost unit. A unit that could be trimmed to allow lucrative bonus schemes and money to go towards self nominated awards.

This is Care 2014.

18

One of the aims of the #LBBill is to push the State to be more acknowledging, more respectful of the input of families & allies into the lives of disabled people, post 18. The current attitude of the State is pretty piss poor. The most common responses of the State towards families range from being totally ignored, humoured, to being met with suspicion or downright hostility.

This attitude doesnt make any sense to me. Surely all the evidence is that families become even more important post 18. Just supposing that on the person’s 18th birthday, every family announced that they were downing tools. The State would implode.

For people with autism, routine is so crucial and for the most part between the ages of 5 and 18, that routine is provided by the routine of school. When school ends, a whole new routine needs to be built and it is solely down to the family to facilitate and maintain the new routines. Nobody else can do it. And it becomes a lifetime’s job from 18 until the family carer is no longer around.

At 18, you get caught up in the lie that is “transition into adult services”. There are no services. There is no transition. But you become distracted by this imaginary process at a time when your energy needs to be focused elsewhere – helping your 18 year old build a new life. I remember Steven’s old social worker, Whistler’s Mother, giving me a wad of handouts of ” things Steven might like to get involved with”. Most of them had been photocopied so many times they were unreadable. Most related to children’s services. A handful related to events he could do once or twice a year. Out of 60 odd pages, there wasn’t one that could be used to build a new routine.

The reliance on families by the State is huge. I’ve written many times before that for personalisation to work, the expectation on the family’s input is massive. You become an employer. You have to run a payroll. You have to recruit staff. Nobody else will do it. If families didn’t do it, personalisation would collapse.

A family member’s life changes dramatically when your son or daughter hits 18 as well. I was lucky, being self employed, that I could chose the hours I worked. But overnight, I suddenly had to reduce my working hours considerably. There was no support and Steven needs 24 hour support. Even with his “gold standard package”, I still can’t work more than 25 hours per week.

The other problematic area is that a whole lifetime of experience suddenly counts for nothing. Knowledge, memories, built relationships are suddenly seen as threatening rather than the foundation stones they should be. It is deeply confusing for the family because, on the whole, during childhood your input is valued by the State. Upon the arrival of an 18th birthday card, you become a nobody in a nothing system.

This isn’t meant to be a whinge post. I love my role in Steven’s life and know it couldn’t be any other way. But roll on #LBBill and a day when the State recognises the reality of life for the over 18s of the social care world and their families.

It Never Abates

Steven has two great fears. One has arisen every Christmas since 2010. The other fear is a constant. The first fear is about being taken away from his home “for a long break after Christmas”. The other is about me falling ill. Put the two together and it is a recipe for the most unimaginable stress and anxiety.

Sunday evening, I knew that I was going down with a cold. When I woke up yesterday it was full pelt. Steven is alerted straightaway because “Dad is talking in a different voice”. I tried to describe the word “hoarse” to him once but he got terribly confused that I had swallowed a horse! I left early for my respite evening and curled up on the sofa under a duvet and had an erratic sleep between 6pm and 6am.

Tuesday is a full on day in the Cowley house. When Steven gets back from swimming, we do a compilation tape for his disco tomorrow. He expects me to sing along and repeat back his narrative story to each song. Then we watch a Gladiators video and I am expected to play the part of John Sachs (the commentator), John Anderson (the referee) and Fash (the compere). And to round the day off, Steven runs through the Mr Bean video he watched yesterday, describing in the most minute detail every scene from the show. You can probably imagine that my voice, croaky at the start, had descended into an inaudible rasp five hours later. This leaves Steven beside himself with anxiety. Crying. Hitting himself. Hitting me. Screaming. Throwing anything he can lay his hands on. Needless to say, my verbal reassurances make the anxiety worse as I have no voice.

At times like this, my fury with social services launches like a rocket. They kept him away for a year for “assessment and treatment” and he came home with post traumatic stress. Only I’m not allowed to call it that. As the council’s in house psychologist put it – “He’s not been fighting in a war”. At most, she would acknowledge “a degree of anxiety” but dismissed the idea that the Unit may have played any part in the causation. The council have maintained that position – “we’ve done nothing wrong Guv” since 2010, probably under the advice of their legal department who possibly feared a bigger damages settlement.

Their position completely blocks off seeking external input into the issue though. I don’t think I’d want to seek their help anyway but I couldn’t bear sitting in a room with the speech therapist and the positive behaviour team again as we discuss possible material for a social story to help Steven with his “separation anxiety”. Or they might get the psychiatrist involved, who will inevitably introduce a new cocktail of anti psychotics. Or worse still, God forbid, the positive behaviour team, ever on the lookout for a new specimen, might suggest another period of assessment & treatment.

The PTSD ( for that’s what it is) is there all the time. Day in and day out, Steven (and me and the support workers) find our best way of dealing with it. But when the two major triggers collide, we know it’s a time for hard hats and battened hatches.

Roll on January.

P.S. I just wanted to add that this is a rant post, a get it off my chest post. I’m not looking for advice. Each time I post something like this, I am inundated by the positive behaviour crowd across the country offering their words of wisdom. Not today please chaps.

A Search For Bono

Another question of grave importance has just arisen for Steven as he listens to U2 during his Sunday morning music session:

“Dad – Bono hasnt found what he’s looking for. Bono’s looking for his what Dad?”

“Dunno Steve. Perhaps Bono’s looking for his socks?”

“Not socks Dad. Bono’s socks are on Bono’s feet”.

” Dont know Steve. What is Bono looking for?”

” Bono’s looking for his blue Walkers salt and vinegar square crisps”.

“Has Bono found them Steve?”

“Bono’s crisps are in Simon LeBon’s belly. Bono is cross”.

Dilema sorted, Steven carries on with his session, occassionaly muttering, ” fucking Simon LeBon”.

New Routines

It’s been two weeks since the furniture was delivered to my new flat and I was able to start working and “respiting” there. I’ve done two weeks of work there and four overnight stays and it is definitely going to take some getting used to. In the change of a calendar leaf, I suddenly have a very different life to the one I had in November.

I’ve been staying at the flat on Monday nights as that has been my regular respite night for the past couple of years. I arrive there about 2pm and return to Steven’s at 10am the following day to get on with the housework before he returns from swimming. I chose Wednesday night as my second night at the flat. It is my late night at work (finishing at 8pm) and I normally don’t get home until 8.45. Steven usually takes himself off to bed about 9.30, so we don’t have much to do with each other on Wednesdays, so that seemed a good day to chose for the second respite.

Wednesday this week was great. My last client cancelled, so I was free from 7pm. I phoned home to have an end of the day chat with Steven and then the rest of the evening was mine. I made some dinner and then had half an hour in the bath. I then took the duvet off my bed and snuggled up on the sofa to watch The Apprentice with a can of lager and a packet of Jaffa Cakes. This may sound rather mundane to some but I can’t begin to describe how different it is for me. Everything I do in the flat, I find myself asking the question – “Good grief, when were you last able to do that?” Half an hour in the bath, uninterrupted is unheard of at home. I can’t remember the last time I managed to watch an hour long TV programme all the way through without having to engage in a Mr Bean or Take That conversation at the same time. I didn’t have to multitask. It was pretty prefect.

The next morning, I woke up at 6.45am and rang Steven straightaway to go through his plans for Thursday. Once I’d done that. I felt at a loose end. At home, there is always something to be done or someone (Steven or a support worker) who wants a chat. I did the impossible – I went back to bed until 8.30. I then did the support worker’s wages online (again without interruption) before my first client arrived at 10am. And all this against the backdrop of the traffic up and down the river – the barges and the swans!

Yesterday afternoon I finished work and didn’t have to be home for three hours as Steven had gone to the Mencap Pool. Ignoring the voice in my head (Dad – I don’t like Mr Poirot – let’s watch Gladiators), I settled down to watch Hercules exercise his little grey cells in Evil Under The Sun. Today, I got to work and went round with the hoover and duster and changed the bed sheets before starting work.

I apologise if this sounds ridiculously self indulgent. But I can’t quite get used to how things have changed so quickly. I have more energy. I have more patience. I have more sleep. I keep noticing and being startled by how some things will never be the same again. The big things – yesterday I picked up the family Christmas cards and felt so sad to realise that for the first time in 33 and 20 years respectively, I wouldn’t be buying a “Wife” or “Mum” card. And the little things – I can leave a Cornetto in the freezer and return two days later and find it is still there.

The novelty will wear off. I will dust less. I won’t notice the ducks. I will have worked my way through my Lewis boxed sets. But for now, I can feel I can breathe in a way that I haven’t been able to for years.