Silly DoLS Talking

After 16 months of assessments, changes of social workers, endless paperwork, yesterday I finally got the completed paper work for the Community DoLS. I’ve written at length about the process before and hopefully, this will be the last post on the matter.

As a quick reminder, the concept of Community DoLS came about as a result of Lady Hale’s acid test ruling in the Cheshire West Supreme Court appeal. A person is now deemed as being deprived of their liberty, regardless of where they live, as long as they meet the two acid drops of the acid test – are they free to leave and are they under constant supervision? If they aren’t free to leave their own home and are under constant supervision then they are being deprived of their liberty. That kicks in those two lengthy and cumbersome processes: the mental capacity assessment and the best interests decision.

In Steven’s case, the mental capacity assessment has been the most time consuming. For ages, the big question that nobody seemed to be able to answer was: does he have or lack the capacity to do what? In the end, having decided that it was the very substance of Steven’s care arrangements: the 24/7 support in the home and the 2:1 support when he goes out that was the deprivation of his liberty, the focus of the capacity assessment became “does he have the capacity to consent to his care arrangements?”. If the answer turned out to be that he lacks capacity in this area then the professionals would have to make a decision as to whether it is in his best interests to have these care arrangements and whether they were the least restrictive for his care. Considering they had already agreed to the care plan long before the Community DoLS appeared in the ballgame, the second aspect of the process seemed to be a foregone conclusion to me.

Are you keeping up? Have you got the capacity to take all this in? It could be you one day!

So, the paperwork has been completed and the bottom line of the assessments are that they have decided that Steven lacks the capacity to consent to his support arrangements but it is in his best interests and the least restrictive option for his care to have those support arrangements in place. Through the acid test lens, the very stuff that gives Steven his liberty is now seen as depriving him of it and the paperwork will shortly go to the Court of Protection for its authorisation.

I’ve already tweeted several of the highlights/lowlights of the report but I feel they deserve greater analysis as this is the process that every learning disabled person in the country will be going through at some point in the near future (if they already haven’t done). I want to say that I’m not knocking the capacity assessor or the best interests assessor at all. They were tasked with an impossible mission. They were both meeting Steven for the first time. They were allocated about an hour to do the interviews. They were just pawns in this very silly game. And at the end of the day, they did both arrive at the only conclusion they could have done under these circumstances.

But. The assessments and outcome say nothing about Steven at all. He has so much more going for him than either assessor was able to elicit. Anybody that knows Steven will read the assessment and despair at how so many points were missed to really engage with him and would have given him and evens chance to display his understanding and wisdom. The fact that the assessments sail right pass the real Steven is no comment on him at all.

Here are some direct quotes from the report with my thoughts:

“I asked ‘Where do you live?’ Steven said ‘Cowley House’ and pointed at the floor. I then asked him where is Cowley near? Despite offering this question a few times, Steven repeated his previous statement”.

Okay, Steven was able to say where he lives. I don’t understand what the question about where is Cowley near has got to do with anything. Does geography come into a mental capacity assessment? Steven knows that his house is near to Uncle Wayne’s and Jay’s sweet shop but I don’t think he would have answered that from the way the question was phrased. Has being able to judge distance got much to do with demonstrating your mental capacity?

“I asked Steven if he lived with other people. Steven said yes. I asked who these people were. Steven said “Mark Neary and Des and Alan and Chris Young. I asked Steven ‘who cares for you?’ to see if I could help him make a distinction between these two concepts. Steven mentioned many of the same people above. I repeated the question and Steven repeated his response”.

What is the correct answer? Those people do live with Steven, in his eyes. They eat and sleep in Steven’s house during the week. Steven is remarkably comfortable in his own skin and doesn’t see himself as dependent on others. He certainly doesn’t carry the emotional baggage that people carry when they need to rely on others for support. To him, life is much more straight forward – these are people in my life who I do things with.

“I asked who takes Steven swimming. He said ‘Michael and Alan’. I asked Steven whether he would be safe to go swimming by himself. He said ‘no’. I repeated this question and he said ‘yes'”.

He gave the correct answer. He does go swimming with Michael and Alan and he knows that he can’t go by himself. Asking the question is dodgy psychology. Steven is very eager to please. He probably assumed that he had got the answer wrong first time and was being given a second stab at it. I dunno but that strikes me as a little cruel.

“We talked about cookery. Steven gave me the answer first that he cooked his meals and when I asked him a second time he said that staff did so. The support staff pointed out that both are true; Steven is able to use the microwave by himself but freshly prepared meals are made by staff”.

Thank goodness that the support workers were able to point this out. Without their intervention Steven’s reply would have been filed away in that category of not understanding the question.

“We talked about what Steven would do if there was a fire in the house. Steven became distressed at the idea of a fire and did not pay heed to my question about what he might do in such an instance. I moved on from this questioning after reassuring Steven that there was no fire in the house at the moment”.

This one seriously pisses me off. For two reasons. I accept that the assessor couldn’t have foreseen that his question would have caused distress. The fact that he mentions it in his report suggests though that he still doesn’t realise that it was his questioning that caused the distress. Steven does know what to do in the event of a fire. Anyone with even a tiny knowledge of him will know that he follows the Basil Fawlty procedure to fire safety. Many years ago we were on holiday in a caravan. It had a gas cooker which we had never used before. I was outside on the sun lounger one afternoon when I heard him shout: “Fire. Fire. Everybody out now please” and he proceeded to lead Julie by the hand out of the caravan. He thought the gas ring was on fire and demonstrated that he knew the premises needed to be evacuated. But of course, when you take your life cues from Basil and Mr Bean, you’re hardly likely to be seen as such during a mental capacity assessment.

“I showed Steven a picture of bleach and cleaning products. I asked Steven to identify them and he said ‘soap’. I asked Steven who used them in the house and he said ‘Des’. I asked Steven if he used them and he gave different answers on the first and second occasions I asked”.

Again, Steven gave the correct answer. Des bleaches the kitchen floor every Monday afternoon whilst Steven is watching his DVD. And another example of asking the same question more than once. It just seems destined to trip the person up.

At this point in the assessment, the assessor returned to earlier themes. Steven slips into echolalia. To me and the support team we know that is a sign that Steven is tired or tense or both.

“I asked about going out – again he told me who took him but did not respond when I asked if he was safe to go out alone – repeating my question back to me”.

Tortuous, isn’t it?

Then came the first bit of humanity during the whole assessment. Thank goodness we’ve got Des on our team:

“I asked the support workers whether there was any other way I could communicate these questions. Des said that Steven understood much of what i was saying but that I wasn’t giving him enough processing time”.

I cried when I read that paragraph. Thank you Des. He’s right. It can take Steven a couple of hours, a couple of days, a couple of months to process stuff. Putting pressure on him or trying to trip him up isn’t going to speed up his processing time and ability.

The final paragraph reads:

“Whilst Steven seemed to indicate that he was happy with his care and support and his home, he did not understand the information relevant to the decision which he would need to weigh to make a decision to the question at hand”.

Does that make sense to anyone? It’s very clumsily phrased. Whatever it means, it feels like the whole assessment was geared to produce that outcome.

There’s been some very supportive feedback on social media. This from Rob Mitchell:

“The failure is that the assessor hasn’t enabled Steven as per Principle 2. A series of questions aimed at catching him out, proving incapacity, ticking the box, keeping Steven in his place & moving on.”

And this from Dicky Biscuit:

“It’s the BIA’s skills at communication being tested not the P’s. Considering the power imbalance betwen P and the BIA, BIA asks a question and gets an answer. BIA asks question again (Why??). P, unsure if 1st answer displeased BIA, gives a different answer. BIA finds incapacity.”

In a year’s time the whole thing will start all over again. I imagine that Steven won’t see either assessor before then so any chance of building a relationship and getting a better understanding of how he operates won’t happen.

I was discussing the report with the support worker this afternoon and we were both unhappy with two references within the report to Steven becoming “distressed”. How can we make this silly process less distressing for him next time? The truth is we can’t.

Steven heard us talking and wanted to know more. I was at a loss. And then true to form, Steven came to my aid. He dismissed what I was saying as “silly talking”. That gave me the idea. Next year we’ll say: “A man is coming this afternoon to play a silly game and do some silly talking”. He can cope with that. It should take some of the tension away. We had to explain Gladiators to him in much the same way when he got worried that Hunter was really trying to take the contender’s head off with his pugel stick. It’s not real. It’s a silly game. Just like a Community DoLS.

Only I know that it is real. It’s abusive. It’s disrespectful. And it’s the type of practice that leads directly to the way learning disabled people are treated as horrifically presented in the #LeDeR report.

But who gives a toss when there’s paperwork to be done.


16 thoughts on “Silly DoLS Talking”

  1. When my Dad had a mental capacity assessment after a stroke that left him with aphasia and when some of his adult children thought he would really be better in a ‘home’ (ie not in his own home with my other brothers looking after him) the assessor fired questions at him relentlessly. Oh yeah, he also turned up much much later than the arranged appointment time and Dad had elected not to have his dinner until he’d been, which didn’t help the situation any.

    Dad was found to lack of capacity to make the decision about where he wanted to live and the decision appeared to be based on gems such as his blank look when asked if he enjoyed watching X Factor! We didn’t even have a TV in the house when we were growing up and Dad really only ever used it for watching videos and DVDs of operas and suchlike, rows of which were on the shelves had the assessor bothered to look around him.

    ‘So you don’t watch X Factor? Aha! then you obviously lack the capacity to decide where to live and it will clearly be in your best interests to move into a residential home where your ignorance of contemporary TV shows will be speedily rectified, whether you like it or not!’

    Fortunately, the decision was subsequently overturned in the Court of Protection but only because we were around to help Dad fight that particular battle.

    So, yes, it could happen to any of us and I just hope there’s someone around to fight my corner when it does.

  2. At least Stephen’s assessment was to prove incapacity. Martin’s CoP judgments Judge Parry 8th August and 16 October 2017 was to prove capacity.- a RPR 2 lawyers 2 expert witnesses and I think 5 barristers.- Ive lost count. Joy oh joy Martin does have capacity but it fluctuates, so he doesn’t come under DoLs.. He is still deprived of his liberty but without any safeguards. DoLS is, dont we all know, not fit for purpose.

  3. Reminds me of the time I was asked to assess a man for detention because the psychiatrist had asked if he ever thought about leaving the ward. Of course he answered yes. Needless to say I wouldn’t sign the form. One very annoyed psychiatrist

  4. Mark our loved ones have been programmed into ‘people pleasers’ because that is the only way they can can through their lives without too much stress. They have had to learn the hard way that is simpler to let other people make decisions for them, because going against the status quo means they would be labeled ‘challenging’. Being ‘challenging’ means being medicated for your own safety and more importantly for the safety of others. Being medicated can give them more problems in that they cannot accurately or properly describe the awful side effects they now feel. That makes them more ‘challenging’ and they find themselves on a never-ending conveyor belt.

    I do not know the answer to how to test for capacity in a more humane way. but I do know that my son can sometimes come out with such profound statements about life and then alternatively become so repetitive and silly.

    I do know that when my son was three years old, he would cry daily because he did not want to go to nursery school. (It was a special needs nursery). I took the advice of the manager in charge (the wrong advice I now believe) that because my son was handicapped (that was the way he was described 43years ago), I should persevere and make him stay for his own good. I took her advice. I thought she knew best. I have two other children, one older and one younger than my disabled son, both of them refused nursery and I let them choose not to go. It haunts me still that I never gave my disabled son the same choice over his life at the time.

    1. Pauline I shred a tear – My parents gave my brother choices over education. They thought about his interest in sport, paid for independent education and common entrance exams and titution etc. I was forced to attend a special school against my wishes (paid for by the STATE) – no one even checked to see whether I was assessed properly, got an education that was stimulating and indeed on par on what my brother got. I would have died for his education, the broad curriculum, extra curricular activities etc that my brother got. That is why I believe that disabled pupils must have a right to m/s education – disabled childrens’ education should never be left in the fate of parents. Never, never should it be parents preference -it would certaincy spare you of being coesed into making the wrong decision by professionals. If we had no segregated education then parents like you and my folks would have been spared from making the wrong choice. My parents would not agree with me – they do not like me expressing my view on segregated education and it has affected the equality of resources between myself and my brother – but hay principles are principles – can’t put a price on the wonderful job I have at ALLFIE and Free Our People Advocacy.

      1. Pauline can I please give you a big cyber hug for being so brave and honest with sharing your experience and reflections with us about sending your child to special school and not giving him the same choices as your other non disabled children. You are so wonderful in being so brave in sharing with us all – Please accept a big hug XXXX

  5. Dont beat yourself up Pauline. I too, made mistakes of listening to others. If I had that time again id never ever have sent son to his ‘special’ schools. Hed have been better at home with me. They made him worse. Late buses, other kids kicking off , padded rooms, thick teachers. My son still rants about those days ‘Michael , hands down ,or youll go to the blue room’. It was all an exercise in extreme anxiety and stress. Its just awful to think he got nothing at all positive out of it.

  6. Lisa and Pauline – so true I am a special school survivor – I know many others who have not even survived special school, ended up in the psychratric system. I wrote to the Secretary of State for Education asking Sir Keith Joseph whether he could get me out of special school as my parents made me stay there against my WISHES. Please feel free to contact me via the Alliance for Inclusive Education – our fab website is Passinate about inclusive education.

  7. Yes, it’s horrible for some children and depends too much on luck, and kind staff are the thing that matters most.
    Special school was actually the only good service my son had – mostly good – although he was stressed some days. He was mostly non-verbal but loved reading and writing and science, etc., and the daily routine, and staff showed off his work to visiting inspectors, and they liked him.
    But if he wasn’t interested, it would have been awful, as every day was curriculum-led. But he came home to his sanctuary and that was his comfort.
    Even today, he thinks about us all the time and we about him – and are together 3-4 times a week.
    His fellow pupil was quite distracted all the time and not a ‘model pupil’, and sometimes I saw staff ignore or act irritatedly towards her – she would link arms with me whenever I popped into school and I feel so angry for her. During transition at age 16, she was interested in a Writing With Symbols handout she was given that no one was bothering helping her with and she pointed at it showing it to me instead of her staff – very telling.
    Only 5 years later she lost her mother who was devoted to her – she had a master’s degree and used to ring me every other day, and always said ‘We come as a package. You can’t talk about her without talking about me, or me without talking about her’. She would have been furious to know she was going to suddenly die in her fifties and leave her precious daughter as they were ‘joined at the hip’, she said.
    I think the greatest job is to serve our children. We had limited choices, full stop. I’m focussing on now.

  8. So very true FF2016. It is luck and kind staff. So very hard for those deemed ‘hard to place’. Surely a therapeutic environment with a programme that gradually de sensitises ‘triggers’ as opposed to avoiding them ,would be beneficial to our young ones. Is it really rocket science i wonder. I really hope that girl is doing ok now ?

    1. Lisa I do not understand what u are saying – difference between desensitises and avoiding triggers (of behaviour) sounds very interesting if I understood what u meant – please explain

  9. LIsa and `Simone thank you for your lovely words. However I need to explain myself better.

    My son’s nursery placement was not a terrible place. In fact the people working there were wonderful. It was the fact my son was not emotionally ready to leave me for four hours a day at that time in his young life. With hindsight I would have spared him so much grief if I had listened to my heart and not to the manager. It was my decision at the end of the day but it was the wrong one. It took ages for him to trust me that I was not going to leave him.

    Incidentally I did eventually take him to the local playgroup and stayed with him but it became blatantly obvious that he could not keep up with his peers. It was remarkable though that no other child treated him differently. One little boy did ask me why my son did not walk properly. I told him he was handicapped. He said “I know Andy Capp”. I had to stifle a chuckle, his parents were obviously Daily Mirror readers!

    Simone it is so sad that you could not have had the same chances to be educated more richly like your brother. I am sure your parents thought you would be more sheltered and cared for in a special school and did not realise at the time that it was the wrong choice for you. Incidentally I have to say that my son’s 12 years spent in his ESN school was the best years of his life. He loved every minute of it. Surrounded by people who really cared and he thrived.

    Going from school to a day centre was. as one parent put it, ‘like falling off a wall’. Not the staff’s fault, just that education commanded bigger budgets than social care. He did eventually get to like the day centre because a lot of his peer group were there too. He did several stints in the local colleges. They were great, but of course, not many people with LD come out of college with a promise of paid work.

    Simone, Dame Warnock was a great believer in non-segregated education but had to admit, very honestly, years later, that it was not a success for a lot of people. Some students felt that they were different, they could not keep up and some students with LD did not thrive at all. Dame Warnock said that the reformers had their hearts in the right place at the time but it was not a runaway success for everyone and in fact was quite harmful to some students.

    Valuing People was rolled out at being the best thing since sliced bread but again many people, who could not take change, were psychologically harmed when local councils were slashing and burning all their day centres in favour of hubs and ‘out in the community’ themes. Again it proved successful in meeting some peoples needs but on the other hand sent many people into depression which, at the end of the day led them to be on medication. The ‘one size fits all’ does not work. It should never be all or nothing.

  10. Pauline, for me I did not experience that my parents thought it was about being sheltered and cared for. I felt little was done for me other than place me in a segregated provision whilst growing up. Pauline it is interesting that you allowed your non disabled children at 3 decide whether to attend a nursery or not – and yet they “should” have been more emotionally ready than your disabled son who would be less emotionally ready to cope with nursery. It’s like all that around independent living. Disabled people at 14 are expected to be thinking about independent living and yet not their non-disabled peers. My nephew is 21, he is not thinking about Independent living. It almost feels that there is pressure on disabled people to be prepared at a much younger age, such as going to school, getting a job, becoming independent etc..

    1. You had a negative experience, but not all do. But you are a lot more able than many.
      I know that pushing my son into nursery for a year before special school was a good experience as he quickly grew to love the toys and routines, and the non-disabled children all wanted to be his friend – they were all lovely at that age. A boy who was an elective mute and withdrawn used to put an arm around my son as he arrived, and only sit with him as I think he felt he had something in common (I hope he’s okay now as he had milder difficulties and might have improved). Three year olds are so perceptive.
      My son also always let two little girls hold his hand at storytime, and had a 1:1 classroom assistant who wrote a daily diary that deserved an award.

      Being a child was the best part. I agree post-school is like falling off a wall.

      Lisa, I don’t know how the girl I described is as a woman now. She was in our life for 16 years.
      If I met her, she’d look around to see if her mother had come back and I’d hate to see her search. I know she’s thinking of no one else.
      And she’ll never know her mother wrote incredible poetry about her, that she occasionally showed me, but probably hid it. I used to say it would make her famous and how it’s discovery would help her daughter. I will write to her son about it.

  11. Pauline do not get me going about Warnock – a big U-turn and she also believes in assisted suscide as well Do not get me going on the joke around valuing people either!

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