Uses & Abuses: The Mental Capacity Act & Families

The Mental Capacity Act (MCA) seems to have taken over my thoughts a lot of late. For the last couple of weeks I’ve been putting together a guide for Families for Dimensions.  It’s cropped up with lots of families I’ve worked with and most recently for one of G’s housemates. It was a key part in some of the “Transition” training I was doing with professionals in Buckinghamshire this week. Then of course, there’s Connor and the way the MCA was used as an excuse to alienate and distance his family, deprive him of his liberty and then use the choice and control line. All documented in Sara’s brilliant blog.

I have to say from the outset that I’ve always been a big fan of the MCA. I like that no assumptions are made about people lacking capacity unless it can be proven. So many assumptions have been made about G throughout his life and even though his lack of capacity to be able to make decisions has never been questioned (known syndrome and IQ of less than 20!) I like the fact the starting point was to prove it.

I like the five principles of the Act. The fact that all practical help should be given before anyone is treated as not being able to make their own decisions and that that any decision should be made in his best interests. I like the fact the Act enshrines basic human rights and freedoms granted to everyone else, that any decision made on behalf of another must be the least restrictive and the fact that people are allowed to make unwise decisions (just like the rest of us)

As a person centred thinker I also love that the decisions G can make about his own life are respected and encouraged. What he eats (bit of an issue at the moment but for another post maybe!), what he wears, what he does with his day, who supports him. And, that the Court of Protection is ensuring that I manage his money properly.

In saying all this I can completely understand why the Mental Capacity Act scares some families shitless!  ….and rightly so in many cases.

I remember feeling physically sick when G was around 16 and letters started arriving addressed to him rather than me. Partly this was because I didn’t really understand the Mental Capacity Act then and partly it was that as the mum of someone with his level of learning disability I was struggling to imagine that anyone could treat him as an adult. I’d always thought of him as a kind of Peter Pan character (never growing up, not the flying and hanging around with fairies you understand!)

As time went by and through person centred planning I’ve learned to see him differently and appreciate the fact that however immature his behaviour and level of understanding is, he is a young man not a kid any more (even though he needs as much protection and supervision as an 18 month old). What we have to do is to stay involved so we can be part of any decisions that are made for and about him, build a good relationship with the people who provide his support (which we’ve done) and see things from his perspective by using person centred approaches.

For me, the problem has always been the way the Act is used, abused and interpreted rather than the Act itself, but it’s also in the way families of people with learning disabilities are often judged and treated by those interpreting it that leads to confusion and its misuse. This abuse is often rooted in misconceptions and stereotypes of the “pushy parent”

Practically all my work in recent years has been around working with families and what is missing here (as well as being missing in so many aspects of working with families) is the complete lack of understanding of families of learning disabled children and adults. Despite the fact that we probably all belong to a family our families are often perceived as different. Whether G had a learning disability or not I would hope that, just like his sisters, he would seek my advice, support and counsel on important issues in his life. This is how it works in families. I’m 50 and still talk stuff over with my parents even though the final decision is mine.

People are often very quick to judge us too, without understanding where we’ve been on this journey and what we’ve had to deal with to get where we are.

The fact is…It comes as a massive shock to many of us that when our child becomes an adult they are treated as being able to make their own decisions. We’ve spent years making decisions on their behalf, often without question and then suddenly this all changes. Some of this is because for years we’ve have been constantly made to focus on everything they can’t do in order to get the support they, and we, as families need –  Benefits forms, statements of special educational needs and health or social care support. Some of us will have been informed at the time of diagnosis that our child would never be capable of living an independent life or that they have a mental age or 18 months, 5 years, 11 years etc. i.e they will always be a child. Bit odd then that when they leave home and are supported by others we’re told they capable of making decisions and have choice and control over their own lives and many families struggle with this for obvious (to those of us who’ve lived this) reasons.

There were many, many shocking things in the report into Connor’s death that made my blood boil but one comment that stood out to me was this one….

“Then on the Friday afternoon [S3] came on duty and that was it, it was all change. He sat down in the living room and spoke to me and said ‘you do realise you can’t just turn up, he’s an adult and you’ve got to understand that’.”

 7.18 S3’s description of this meeting was:…when she talked about visiting I said I will need to check that that’s okay with [CS]. She has made much of – and I understand why – this issue of whether or not she had the right to information and the right to visit. [CS] was an adult.” 

This assumption that because Connor was an adult he wouldn’t need his family any more is ludicrous…(apart from the fact he was just 18 and had learning disabilities) many of us still rely on our families whether we have learning disabilities or not. But, it’s the kind of “back off Mum, we’ve got him now” “professional knows best”attitude that often underlies such assumptions and judgements that are far too common place…. and it’s this that needs to change. 

So many generalisations and judgements are made about us. here are just a few so you get the picture….If we keep our child at home with us we are at best “over protective” or unable to “let go” at worst we’re “controlling” and living off their benefits.  If they live away from us, whether in their own homes, residential care or college, we’re uncaring and selfish. If we visit them too often and take a big interest in everything they do, we are “interfering”…. (and “over protective, controlling, unable to let go”). Don’t visit enough and we simply don’t care.

I’ve heard all these judgements (and more) made about families over the years and although I’ve also met some parents who have made decisions about their child that I didn’t personally agree with I’ve yet to meet one family who wasn’t doing what they felt was right for their loved one. Misguided, misinformed or simply ignorant of other ways of doing things they may well have been, but they were doing it with the best intentions. This is not to say there are not bad parents out there either, of course there are, just like in any other group…there are some horrible people out there. However as with other walks of life these are the exception rather than the rule.

For me the lack of understanding of families, their experiences, their journey and all the generalisations and assumptions are at the heart of why the Mental Capacity Act has been and continues to be so abused. Along with the lack of information given to families, there is a culture of seeing families who stand up for the rights of their kids as “difficult parents” without a second thought about how they would feel if this was their kid. And, there is little understanding of why we worry so much. The fear and anxiety we have when handing over the care of our loved ones to others…fear that can easily be justified when  you see what happened to Connor, what happened at Winterbourne View and countless other cases. And, while there is some fantastic practice out there, some brilliant stories of good working relationships (my own experience with G’s Provider included and lots of stories I’ve heard about through Dimensions) There’s a long way to go until this culture changes across the board in all services, agencies and organisations that work with us and our kids, but we have to keep trying.

So, as much as I’m a fan of the MCA I almost cheered this week when I heard that the House of Lords have put together a report containing key recommendations to the Government. Nine years on since it was written and seven years since it was implemented, the question is… “Is the Mental Capacity Act working as intended?”

From where I’m sitting the simple and resounding answer to that is NO! and I’m delighted it’s being looked at again.

Our friend Cathy Score (Community Care Lawyer) is doing some work for us (OXFSN) at the moment and she’s written this brilliant summary of the report to save you reading through the whole thing.  HL MCA Report Summary (1)