Day 32 was adopted by Lucy Series. Lucy has blogged about LB before, including shortly after he died. Lucy offered to adopt a day and blog for us, you can read her full post here. This is what she had to say:
What happened to LB, and to LB’s family, raises so many issues it’s difficult to know where to start. Today I want to take up one theme from the Connor Manifesto: ‘Prevention of the misuse/appropriation of the mental capacity act as a tool to distance families and isolate young dudes’. I want to talk about what families can do about this issue under the current law, and then what kinds of broader changes people might want to campaign for.
Lucy’s post provides context and information about the Mental Capacity Act and the role that families can play, when supported and enabled to do so. It also directly focuses on what parents and family members can do if they feel shut out:
Under the MCA, families need to know that there are several points at which they should be involved in decisions about their relatives:
- People should not be found to lack mental capacity unless all practicable steps to help a person to make a decision for themselves have been taken without success. In the MCA Code of Practice, Chapter 3 discusses ways of supporting people to make a decision, and one suggestion is that families should be involved in helping a person to make a decision for themselves.
- If a person has been found to lack mental capacity, and a best interests decision has to be made, decision makers must consult with families involved in caring for a person or interested in their welfare if it is ‘appropriate’ and ‘practicable’. In emergency situations, it might not be, and sometimes if there are serious safeguarding concerns it might not be appropriate to consult family, but most of the time it will be and families should be involved. Ambitious about Autism, Mencap and the Challenging Behaviour Foundation worked with Irwin Mitchell Solicitors to develop a tool to help families members who feel that they are being pushed out of decision making.
- Sometimes families can find it hard to access information about a relatives’ care or treatment by services. If the person has mental capacity, then they can consent to them being given access to the information. If they lack mental capacity, families will have to show that it is in the person’s best interests for them to be given confidential information about their treatment.
- Where families dispute the outcome of a capacity assessment or best interests decision made by professionals, there are some things they can do, although unfortunately there are no ideal solutions. They should start off by voicing their concerns to decision makers. If that fails, they could consider making a complaint through the authority’s complaints system (and ultimately, if they are not satisfied with its outcome, they can complain to an Ombudsman for health or social care). If the public body or the family are able to finance it, it may be useful to involve an advocate or a mediator. Or, if the dispute is serious and intractable, they may need to consider applying to the Court of Protection. Some guidance on this is available here.
Lucy goes on to discuss the ridiculous misuse of the Mental Capacity Act as a tool to exclude families, and she introduces the UN Convention on the Rights of Persons with Disabilities and Supported Decision Making. It’s really worth reading the whole thing. Thank you.
#107days 
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Thanks for the intro George. If people would prefer to read the long version in HTML form, I’ve posted it over at The Small Places:
http://thesmallplaces.wordpress.com/2014/04/20/107-days-day-32-recognising-support/
If anybody wants further information about these models of supported decision making, or the CRPD in general, don’t hesitate to get in touch.
L x
May I remind people that it’s not just the Mental Capacity Act that is used to distance families and to exert control over disabled people’s lives, but the Mental Health Act as well. I am currently in contact with a family whose daughter, who is 20 years old and autistic, is being held under section 3 because the unit staff insist they need it to control “challenging behaviour”, including escape attempts, which is curiously much less of a problem when she is out with her family, or home. They have also proposed to transfer her to a secure unit 180 miles away, something her family have managed to hold off while they challenge the section, but if they are unsuccessful then she may be transferred against her, and their, will.
The MHA presents a minefield of potential abuses, but it should in my opinion be modified to specifically exclude autism, so that psychiatrists do not have such control over the lives of disabled (and not mentally ill) people.
I don’t really think there is much prospect of autism being excluded, given that it is often some of the characteristics of autistic behaviour that lead to the most intractable issues. You are quite right to construct as an issue of “Who controls?” though.
My daughter has not been diagnosed as autistic – brain damaged from birth injury – but take her away from the home she loves, and her “challenging behaviour” would likely be really something. So, quite likely, would mine be if subjected to such a level of control.
To most adults, the prospect of your PARENTS controlling your life once you are an adult would be appalling. Quite rightly, we live in a society that places a very high value on independence and autonomy. But it isn’t that simple, is it?
There was a poem doing the rounds recently. I would applaud the spirit and aspirations of the young man who wrote it, and I sincerely hope the freedoms to choose are working well for him. I had a bit more trouble with the people who cheered him on. Basically, he wanted what most of us want – the freedom to get up when he liked, go to bed when he liked, buy a hundred pair of shoes if he wanted to, be free of institutional restraint. Who could argue with that? Except how many of us HAVE that? In reality, buying a hundred pairs of shoes might just come into conflict with eating when he liked. Or at all.
If you lost capacity tomorrow, who would you want in control? Where do you turn for support? For most people, the State is the last resort. Why are families of adults with LD so stuck for other options?
There aren’t any simple solutions. But it shouldn’t be about who has the POWER to identify your best interests.
I have read this with great interest – and a lot of frustration as well. I will go back and read it again, and follow up the links, because I do think it does point to the most important central issue. As a deputy, I take very seriously the idea that I should attempt to act in my daughter’s best interests. As her mother, I don’t take it for granted that I automatically get that 100% right, and I would very much welcome the kind of genuine support that meant I could discuss things with others – but I do tend to be fairly outraged at the idea that someone designated a best interest assessor can automatically come up with better answers. On what grounds? Vague assumptions of how my daughter ought to live, what she ought to want? People with the kind of disabilities my daughter has are not easy to get to know. I will say again, I do not insist that parents always know best – but they nearly always know a lot more than most! Unless there are strong arguments to the contrary, or obvious safeguarding issues, that should be taken a lot more seriously than it is.
At 18, our children are legally adults, and should have the same rights and opportunities as any other adult. But that should not be regarded as a way of excluding their families. The situations we find ourselves dealing with are far too complex for that to make any sense.
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