Keeping mum, irony and shifting capacity

It’s a tricky one, this capacity business and parenting. I deeply believe that capacity should be presumed and agree (and welcome) that “unwise or eccentric decisions don’t themselves prove lack of capacity”. I also worry that this has led to instances in which the wellbeing of learning disabled adults is compromised because “capacity” is so difficult to demonstrate in practice.

There was a roundtable discussion about Winterbourne yesterday with a range of learning disabled people (I assume/hope there were learning disabled people present), families, community groups, government ministers, policy makers and service providers. This was live tweeted by various people (see #winterbourne to follow the discussion). Families cropped up early in the discussion and there seemed to be a call to involve families rather than treat them as a problem.

winterbourneImportant, much needed discussion, but I was struck by the irony of going to visit LB with the threat of him deciding he no longer wants to see me, hanging over my head. It is quite a blast to go from being the full time carers, with very, very little support over 18 years to suddenly being removed from the equation. We have to ask for any snippet of information. The outcomes of a team meeting on Monday remain unknown to us. Again, ironically, in an attempt to not appear a batty, desperately protective mother, I didn’t ask to attend this first meeting. When the default position is the young person has capacity (without capacity being tested), the positioning of family members within the structure of the mental health service is a bit anomalous. And anomalies are odd and out of place.

Fran came round yesterday afternoon, armed with useful information from a brilliant workshop she’d been to on capacity. It was run by Luke Clements, who is an expert in this area. “He was absolutely brilliant”, she said. “Ah, him? I updated the literature review for his disabled children and the law book a few years ago. My supervisor was the co-author.” Is that ironic? I’m not sure. My research at that time was about mothers and going out in public with dudes like LB. The real irony is that LB can’t go out anymore. And my role as a mother is now contested.

1 thought on “Keeping mum, irony and shifting capacity

  1. so good to have found your blog. My son is 36 now and has just had to move care provision (again). Anyway more of that when I have time, but just wanted to agree as to the brilliance of Luke Clements (I went to a Mencap workshop for families where he was the main speaker), and the shifting sands of parenthood of an adult with LD – sometimes I have been treated as if I am part of his life – so far his new home seems very good on this – but ignored at other crucial points.
    wish I had known or managed to form a similar supportive group years ago
    thank you for blogging

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