Lady Hale Returns To Cowley

I was going to write a very different kind of post today to the one I’m actually publishing. I’ve been reflecting a lot on how Steven is very much king of his castle in his own home. I’ve noticed everyone is using a new language to reflect the fact that for a large chunk of the week Steven and I are living separate lives. The other day, one of the support workers asked me about one of Steven’s mates – “Does he live on his own like Steven?” The next day, one of the other support workers asked me to get a new mop and said, “You could bring it when you next visit”. Even Steven sees things the same way now. We were discussing our trip to see an Abba tribute band and Steven wanted to know if I would be staying after the theatre – “Dad’s coming for two sleepovers next week?”

Another sign of how settled Steven is but also demonstrates how he cannot quite shake off the trauma of 2010 happened on Sunday. He overheard me talking to the support worker about the old house. Immediately, Steven went into a panic attack. “Steven Neary’s not moving again. Steven Neary’s staying in the new Cowley house forever and ever”. It took well over an hour to reassure him that he is staying put.

That’s what I was going to write about. Then this morning I got an email from his social worker about the Community DoLS. It’s ten weeks now since the assessment that led to the decision that Steven is being deprived of his liberty in his own home. We haven’t heard anything since. No paperwork; no court date. Until today. The email was asking to arrange a date to carry out a mental capacity assessment.

My heart sank. I know that mental capacity assessments have to be decision specific, so assumed the decision would be the same as the ones Steven had back in 2010 – does Steven has the capacity to decide where to live? Even before I clarified the matter, I started girding my loins. In my view, Steven is quite capable of stating why he wants to live in his home and why he doesn’t want to live anywhere else. He could come up with quite a list in both the pros and cons columns.

But I was wrong. That’s not the decision that Steven’s capacity will be assessed on. I sought clarification and got an immediate reply:

“The decision is whether Steven has the capacity to consent to the care and support he receives, which amounts to a deprivation of his liberty”.

Every word of that sentence makes my skin itch. How will that be presented to him? “Steven – do you mind Michael going with you to Jay’s sweet shop to buy your Frazzles?” “Steven – is it okay for Dad to order your tickets for the Abba Gold show?” “Steven – do you consent to Alan doing your haircut on Thursday?”

Don’t forget, under their reading of a Community DoLS, all those normal aspects of a decent care plan for Steven to live his life equate to him being deprived of his liberty. The problem with a capacity assessment is that it will expect Steven to understand that going swimming with Francis and Das means in the nonsensical, bureaucratic world of social care he is deprived of his liberty. I don’t understand it. It’s beyond my capacity. So, it’ll be beyond his capacity too. But the process of deciding he lacks the capacity to see his life through a bureaucratic lens is likely to retraumatise him.

I’ve already written back to the social worker to say that I will not be taking part in this exercise when she visits. The time she is suggesting, there are two support workers on duty and I’ll leave it up to them. That may sound chicken but I can’t support Steven through the process of the assessment. Nobody can. He will get distressed because he won’t understand what is being asked of him. My job is to help him with the distress, after the event. To try and reassure him that the meeting was a pointless activity & that he can stay in his Cowley house forever and ever.

What I really want to do is to write back and say, “LEAVE HIM FUCKING ALONE”.