Restricted

It’s that time of the year again. Or that time of every two years. The renewal of Steven’s Community Deprivation of Liberty order.

This one didn’t feel painful in the least. One hour on Tuesday morning for the mental capacity assessment. One hour on Thursday afternoon for the best interests meeting. And then, 20 minutes yesterday afternoon to read the final report. The whole thing has reignited Steven’s anxiety about being able to “live in the Cowley house forever and ever”, but we’ll deal with that.

I actually enjoyed the mental capacity assessment because it demonstrated how much Steven’s confidence has grown since the last one. The assessor did the usual annoying thing of repeating the question that he’s just asked. In the past, this has really thrown Steven. You can see him thinking, “Oops. Did I get it wrong first time?” I enjoyed this little exchange:

Assessor: “Steven, do you go to the shop on your own?”

Steven: “NOOO.”

Assessor: “Why do Alan and Des go with you to the shop?”

Steven: “Alan carries the milk back to the Cowley house.”

Assessor: “And what might happen if you went to the shop on your own?”

Steven: “Steven Neary might get knocked over by a car.”

When the assessor asked the same questions, five minutes after asking them the first time, Steven didn’t hesitate or become flustered, but said exactly the same thing as he said first time around. I felt so proud of him.

Two days later we had the best interests meeting. This one was on Zoom. Steven was watching a Top of the Pops DVD in the living room, so I dialed in to the meeting from my tablet in my bedroom. The two support workers did the same from Steven’s bedroom. It produced a strange stereo effect. I could hear them on my tablet and I could hear them from the next room. It all went swimmingly until the final question, which initially was directed to Michael:

“So, Michael. To conclude, would you say that all the restrictions on Steven’s liberty that are in place, are in his best interests?”

Silence….

“I’ll let you think about that. Alan, do you have a view about the restrictions?”

Silence…..

I started to laugh. One of those awkward, embarrassed, the-king-has-got-no-clothes-on laughs. The silence went on uncomfortably long. At one point, Alan asked, “Restrictions?” but we were all struggling. I had to speak up:

“The thing is it’s the word ‘restrictions’ that throws us. There’s not a single aspect of Steven’s life that we ever frame as being restricted. We don’t see Des going to the shop with Steven as a restriction. We don’t see Michael cooking a Toad In The Hole as a restriction. We don’t see Alan doing Steven’s shave as him being restricted. Three months ago, you did Steven’s care plan reassessment and all these things were seen as positive. They were all aspects of his care arrangements that give him his independence; give him his liberty. It’s hard for us to suddenly flip them over and see them as restrictions on Steven’s liberty.”

So in order to get the whole process over and done with and for the assessor to get on with completing the forms for the Court of Protection, we all agreed that the many “restrictions” on Steven’s life are in his best interests and are the least restrictive option for his care. Boxes ticked. The council can now pay the extortionate Court fee and we don’t have to think about Community DoLS for another two years. Of course, there’s a part of me that would love to challenge all this nonsense. I know that there are several legal bods chomping at the bit to get a Judge to look at this pantomime. I actually believe that Steven has the mental capacity to understand (most of) and consent to his care arrangements. I don’t believe his liberty is being restricted in any way whatsoever. On the one hand, it sticks in my throat that I’m colluding with the debacle, but on the other hand, I have neither the energy or enthusiasm to launch a court challenge over what is a principle. The reality is nothing bad is going to happen to Steven as a consequence of the Community DoLS. Nothing good comes from it either. It is meaningless. Two stressful hours every two years and for the rest of the time, he’ll get on with the business of living his life.

After the assessor left, I showed Steven an advert on Facebook for a concert next June with Paul Heaton & Jacqui Abbott and The Proclaimers. I told him that we could get tickets. He was beside himself with excitement. He even told the Iceland delivery man about the concert.

Next June, as we sit at Doncaster FC singing “Give me one last love song to bring you back. Bring you back”, I can’t imagine any of us thinking that we are being restricted.

One thing’s for sure. If Steven was in any other type of living arrangement (an ATU, a residential home, supported living), he wouldn’t get within sniffing distance of Craig and Charlie.

4 thoughts on “Restricted”

  1. Seems unfair to many supported living, to suggest they would not go; my son in supported living is supported to numerous events (and yes his support worker was happy to sit with a 25 year old at nursery rhymes live!) and his current team are great at seeking out events to book. Supported living should support the person to whatever they would like. No issues there for my son.

  2. That’s brilliant, Natasha. That’s certainly not the case round my way. There’s a block of 25 supported living flats just down the road from us. At nighttime, they only have 2 staff covering all 25 flats. It wouldn’t be possible for someone requiring 2:1 support to be able to go out with those rota arrangements.

  3. Not my son. Not for many others. There is post code lottery regarding many aspects of health and social care. And like much else, access to events like this wonderful evening, depends often upon whether individual has family to ensure a full, happy and safe life. For many only basic aspects of life such as food, roof and bed can be guaranteed. Certainly not the relstionship, level of support and continuity of care needed to provide wonderful experiences. When my son was injured and spent some weeks in a very pleasant unit he found all the permanent residents were ready for bed at 7pm. Two night staff came on then and that was it…..care wise.

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