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.