I’m not sure how many parents of young adults with learning difficulties like the Mental Capacity Act and I suspect that I’m one of the few that do. I also suspect that may change one day because I don’t like many of the things that are done to families in its name. But right at this moment I like its principles. I like them, because I believe that if they are applied in the spirit in which they are written and if the social and health care provision provided in support of those decisions is sufficiently funded, then they can go a long way toward reducing the breakdown of care for people with learning difficulties in their community.
And when its used in this way it’s not about risk or wisdom it’s about control.
I remember reading something that Mark Neary wrote about the changes that young adults with learning difficulties and ASD go through between the ages of 16 -18. And there is a change and it may not always be exactly at that age but it happens and it’s important. It’s the age at which all young adults want to take control of their lives and it doesn’t matter if they are disabled or what their disability is. It’s the age at which their existing relationships will be challenged, when long established boundaries will no longer seem relevant and a new assertiveness takes hold.
It’s in this context that I think that the principles of the Mental Capacity Act are relevant for families and not just social workers (I’ve amended the text a bit a lot to make it sound a bit less formal):
- We should assume that our young adults have the ability to make their own decisions (even if every ounce of our previous experience with them is screaming that they can’t ) because often they can ;
- We should do everything we can to help them to make their own decisions and only if we’ve done that should we consider the idea that they may not be able to make that decision for themselves (otherwise it will be really easy for somebody to come along and challenge what you as a family are doing) ;
- Young adults make decisions that people in authority like parents and social workers think are unwise – and we need to get over it;
- If people do have to make decisions on a young adult’s behalf then those decisions have to be made in the person’s best interests and not because its convenient for everybody [family][service providers] [social workers][politicians] else;
- If people are making a decision on somebody else’s behalf its probably best to do it in a way that is least likely to piss them off.
To be honest and sort of joking aside, I think the essence of the 5 principles of the MCA are what we try and do anyway. Its what most of us try and do with our other teenage children. When they are ready to make their own decisions we let them. In the process of helping them mature we do everything we can to help them to make their own decisions. They often make decisions we think are unwise, and despite all of that we sometimes make the judgement that they are not ready to make a decision. And if we do have to do that, we do our best to mitigate the impact of the decision that we have had to make on their behalf.
Of course many of the decisions are different. The choices that a twenty year old man with ASD and severe learning difficulties will make are not the same as those that another twenty year old might make. His ability to act independently is different, as is his ability to assess and manage risks to his own well-being. But it doesn’t mean that tomorrow he won’t be able or willing to do, what he couldn’t or wouldn’t do yesterday. What is the same is his need to take increasing control of his life and his choices and the 5 principles of the MCA can help him to do that.
However, there is another problem because it’s not just families that stop young adults from exercising more control over their everyday lives. Choices and opportunity do not exist in a vacuum and often choices are denied to a young adult with learning difficulties because a particular choice doesn’t fit into an existing pattern of service provision or doesn’t reflect best value for a local authority.
The risk then is the risk of no choices and no funding to support those that there are. The unwise decision maker is not the young person, the parent or even the social worker it’s the politician that thinks that you can save money on local social care provision without it having a knock on impact on emergency healthcare placements for young people with challenging behaviour.
And when that happens I’m not such a fan of the Mental Capacity Act because then it can be used for a whole different agenda that has nothing to do with its principles.
The Tired Optimist 