107 Days: Day 32 – Recognising support

If you haven’t been following the 107 days of action campaign for Justice for LB, get over there and get inspired.  Today’s blog post is my small offering for day 32, a shorter version of this post can be read over there.  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.

What is the Mental Capacity Act 2005?

The (mis)use of the Mental Capacity Act 2005 (MCA) to distance families and isolate people is a serious issue.  A lot of the evidence to the House of Lords Select Committee on the Mental Capacity Act 2005 (MCA) reported that families felt excluded from supporting their relatives in making decisions, the final report concluded that:

The general lack of awareness of the provisions of the Act has allowed prevailing professional practices to continue unchallenged, and allowed decision-making to be dominated by professionals, without the required input from families and carers about P’s wishes and feelings.

So how is it that families are being excluded using the MCA, and what should be done about this?

Lots of families haven’t heard of the MCA.  The MCA says that where a person has ‘mental capacity’ they should be allowed to make decisions for themselves, but that if the person lacks the mental capacity to make a decision, then others can make it on their behalf in their best interests.  Who gets to assess capacity and make best interests decisions?  Well, it depends on what the decision is.  Basically, unless a person has a court appointed deputy or has made a Lasting Power of Attorney, then whoever is proposing a course of action related to their care or treatment has to assess the person’s mental capacity to make decisions about it and – if they conclude that they lack mental capacity – decide whether it is in their best interests (s5 MCA).

Sometimes of course it is families who are providing care, and technically (although they may not realize it) they may be acting under the MCA.  But formal health and social care services are arranged and provided by health bodies, local authorities and care providers, and in those circumstances it will typically be they who make decisions about whether or not a person has the mental capacity to choose whether to consent to that service or treatment, or whether it is in their best interests.  A lot of people mistakenly believe that if a person cannot make a decision, then their ‘next of kin’ gets to make decisions for them; this is not the case.  It is in some other countries (for example, in some parts of the USA and Canada), but in England and Wales it is most often up to those arranging or providing care or treatment.

Families can feel shut out at two points.  Their relative’s mental capacity to give or refuse consent might be assessed without their input.  One issue raised by the House of Lords in their report on the MCA was that the ‘professionalisation of capacity assessments, conducted by those with no established link to the person concerned’ can lead to problems communicating with the person and supporting them to make decisions. This might mean that a person is judged to lack mental capacity simply because the assessor did not know how to communicate with the person properly.  Mark Neary has talked about this (and here).  But the evidence to the Committee also contained horror stories of people with disabilities appearing to consent to measures such as having all their teeth removed, where their families had not been involved in supporting them to make that decision and in fact it had not been properly explained to them.

The second point at which families can feel shut out is where assessors decide that their relative lacks mental capacity and a decision should be made in their best interests.  Under the MCA, best interests decision makers have a legal duty to consult with those engaged in caring for a person or interested in their welfare if it is ‘practicable and appropriate’ (s4 MCA).  The evidence to the House of Lords Committee suggested that often families were not being adequately consulted.  Even when they were, there were difficulties where families and professionals disagreed over the right way forwards.

What can families 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:

  1. 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.
  2. 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.
  3. 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.
  4. Where families dispute the outcome of a mental 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.

Where a person is found to have mental capacity to make decisions, families may also feel shut out.  Sometimes families like LB’s are told that they are no longer allowed to be kept informed about their relatives’ care because the person has mental capacity.  LB’s family were made to ring ahead and seek permission each time they visited, staff said ‘you do realise you can’t just turn up, he’s an adult and you’ve got to understand that’.

But look, this is just rubbish.  The MCA doesn’t mean that a person has to have a barrier erected around them to keep their families out.  Most general hospitals and care homes don’t operate permission seeking rules like this any time a person wants to visit a relative.  Most people want at least some of their family to be kept informed about what is happening to them.  There are ways of setting this up so that it can happen on a consensual basis without these barriers which can make families feel excluded and the person themselves feel isolated.  For example, a person could be supported to write or sign a “to whom it may concern” letter naming people who they are happy to be given information about their care and treatment.  Or they could be asked at the outset if they are happy for family to visit freely.  Or family could visit, and if the person refuses to see them then of course nobody should force that upon them.  The worrying thing is, services should be encouraging people’s families to be involved and supporting them, and a marker of several abuse scandals (including Winterbourne View) has been keeping families at arm’s length.

A common concern of families giving evidence to the House of Lords was that their relatives were not being supported properly when making decisions.  Sara wrote about this in a blog post a year ago about LB:

LB isn’t making a decision in a vacuum; the choices offered, the way in which they’re presented in terms of the language used and the way it’s structured, the relationship between LB and the choice offerer, the implications of the decision made for that person, LB (and others) all feed into a complex set of interactions that can mean that the choice isn’t really a choice at all.

Giving somebody a ‘choice’ isn’t the same as supporting a person, it isn’t the same as respecting a person, and it isn’t the same as giving them control over their lives. Antaki and colleagues found that staff in care services often offered (well intentioned) choices that were actually actively disempowering, for example asking somebody whether or not they would like to go to the toilet at the start of a meeting (the implication being that going to the toilet was within the gift of staff, not just something a person could get up and do if they wanted to).  In another study, they found that staff often offered choices in confusing ways and communicated them poorly.  For families, watching from the sidelines, it must be extremely frustrating to watch their relatives being offered and making ‘choices’ which may have been explained poorly or which, in fact, aren’t really choices at all.  Especially when, as Sara pointed out in her blog post:

There is a constraining kind of meta-level control always present which means that, ultimately, LB can only really decide what he’s allowed to decide. If he makes a decision that isn’t perceived to be in his best interests, the swat mental capacity team come in and stop him from making that decision.

Whilst I firmly believe that people with disabilities should be supported to be in control of their lives, being in control of one’s life is about so much more than ‘choice’.

So.  I’ve talked about what families can do if they feel they are being shut out of assessments and decisions under the MCA.  But in my view, the MCA itself is part of the problem.  It casts people into two binary positions: either they are found to have mental capacity, even if they may have been offered little support to make truly informed decisions, or else they are found to lack mental capacity, in which case families have only a relatively weak ‘right’ to be consulted by professional best interests decision makers.

Where do we go from here?  If you are interested in campaigning for a better system, which properly recognizes and strengthens people’s naturally occurring support networks, then read on…

The United Nations Convention on the Rights of Persons with Disabilities and Supported decision making

The United Nations Convention on the Rights of Persons with Disabilities (CRPD) was signed in 2006 and has been ratified by the UK.  It is a legally binding human rights treaty, although as yet it only has ‘persuasive authority’ in the UK courts, which simply means that people cannot directly enforce their CRPD rights.  The CRPD was an enormous breakthrough in the human rights of people with disabilities, and people with disabilities were heavily involved in drafting it.

Article 12 CRPD is the right to equal recognition before the law.  It says that people with disabilities should be recognized as persons before the law.  This might sound like an obvious thing to say, but in some places people with disabilities are not recognized as persons at all, they are denied opportunities to be officially registered and treated as non-persons for official and legal purposes.  It also says that people with disabilities should enjoy ‘legal capacity’ on an equal basis with others; this essentially means that they should be able to make legally recognized decisions.  It also says that people with disabilities should have access to the support they need when exercising legal capacity (making legal decisions or performing legal acts, such as signing contracts), and that there should be safeguards to offer protection against undue influence and conflicts of interest and ensure that supports respect their rights, will and preferences.

What does all this mean?  Well, to a certain extent we’re still working this out, although the CRPD has a United Nations Committee whose job it is to monitor the Convention and they have recently issued guidance on Article 12 (called a ‘General Comment’).

The General Comment says that people should stop making ‘best interests’ decisions on behalf of people with disabilities, and that instead they should try to work out, as best as they can, what the person’s ‘will and preferences’ are or might be.  Michael Bach and Lana Kerzner wrote a report for the Law Commission of Ontario, where they emphasized that families often play a crucial role in helping to work out what a person’s will and preferences are, because they hold personal knowledge of their history, likes and dislikes, and also their preferred mode of communication.  The shift to will and preferences, over objective ‘best interests’, is in some ways a shift to recognizing that a person is not a ‘medical object’ or a social problem to be solved, they have a history, a story, a personality, and those that know them well and love them often play a critical role in understanding them.  These are shifts which are happening in some places under the MCA already to some extent, but not nearly far or fast enough.

The other key development of the CRPD is the move towards supported decision making.  Remember I mentioned earlier how people were often offered choices in unhelpful ways by people who did not really know how to communicate with them?  How people might be treated as having agreed to something because it wasn’t explained to them properly, or they hadn’t been helped to think it through?  How people might be treated as unable to make decisions because they weren’t given the right support to understand them?  Well, these are the problems that supported decision making tries to address.

The MCA does go a little way towards supported decision making.  It says that you can’t treat a person as lacking mental capacity unless the assessor has taken all practicable steps to help them to do so without success.  But the trouble is, the assessor often isn’t the best placed person to help them to make the decision.  They may not have very much time.  They might not know them very well.  The person might not like them and may not want to talk to them.  It’s also a very atomized way of thinking about support – potentially there might be a different supporter for each different time their capacity is assessed, and ‘rights’ to support only kick in if somebody thinks you might lack mental capacity without that support.  And even then, support is only required where ‘reasonably practicable’, and in today’s overstretched services, how ‘practicable’ is it?

The CRPD takes us beyond a binary ‘mental capacity’ approach, and says that people are entitled to support for decision making regardless of whether others think they have or lack mental capacity.  The General Comment sets out some principles for what supports should look like.  Sometimes it’s just as simple as services offering information in an accessible format.  But supported decision making is also about allowing a person to nominate a trusted support person, who then becomes legally responsible for helping that person to access information to make decisions, to help them make the decision itself and communicate it to others.  Think how powerful that would be for people who rely upon their intimate support networks to make everyday decisions and then suddenly find themselves cut off from those networks – as LB did.  Their chosen supporters would have legal recognition as supporters.  Services couldn’t shut them out, couldn’t deny them information, couldn’t go off and make best interests decisions for the person, because the supporter’s role is to ensure that person has access to the information they need to make decisions for themselves, and to help services to understand the decisions that they have made.

There are lots of ways of setting up supported decision making.  It could just be informally done – systems like ‘circles of support’ are in some ways a bit like this.  But supported decision making is different in some ways to other types of person centred planning – as somebody put it to me recently, the person themselves is very much in the driving seat regarding who they choose to support them, what areas of decision making they want support in, and how they want to be supported.  There have been some very successful pilots of informal supported decision making programs, for example in South Australia.  For people without close family, and who may be mistrustful of reaching out for support from formal services (perhaps because of a history of being let down in the past, or coercive treatment), the Swedish Personal Ombudsman scheme has been extremely successful, especially for people with mental health problems.  The scheme is a highly consensual model of professional support (social workers and lawyers are often Personal Ombudsmen), based around building trust and long term relationships.  An economic analysis found that over several years it saved a huge amount of money (up to 17 times the cost of the service) because it reduced crises and helped people to get the most out of other support services by co-ordinating them and pointing out their weaknesses (read more here).

But sometimes, having a support person get formal legal recognition is really important.  It would be important where family and friends are having difficulties getting services to recognize their role as supporters and are being shut out – in a physical sense or in terms of information.  Some countries have very well established legal systems for recognizing supported decision making.  A lot of these schemes were set up by families and people with disabilities together, they are grass roots models which were developed to deal with the kinds of problems of exclusion and a lack of recognition of naturally occurring supports that we are experiencing here.

For example, in British Columbia in Canada, the Representation Agreement Act 1996 allows people to nominate a ‘representative’.  Representatives must help the person to make the decision, or – if they can’t do so – to make decisions in accordance with their best interpretation of what the person would want.  These agreements involve a minimum of bureaucracy, although people can register them if they want to with an organization called Nidus.  Nidus has published some research on how people with disabilities and their families experienced these agreements, which have had very positive findings.

Several Canadian states have frameworks called something like ‘assisted decision making agreements’ and ‘co decision making agreements’.  The Republic of Ireland is about to introduce them (I wrote about that here), and some Australian states are contemplating it as well.  Assisted decision making agreements allow a person to formally nominate a trusted support person (say a friend or relative) and place that supporter under a duty to help the person access information, make decisions, communicate their decisions to others and (crucially) ensure that those decisions are implemented.  Co decision making agreements are a bit more formal.  They allow somebody to nominate a co decision maker, and from the point that the agreement kicks in, decisions are only legally binding if both parties agree.  Why would a person want an agreement like this, you might wonder? Well, they might be useful for somebody who is generally happy to let a trusted person make decisions on their behalf, but they want to be able to veto decisions that they don’t like.  Or they might be useful for a person who sometimes regrets the decisions they make, and who wants a trusted person to sign off on them.

For some people, where there is nobody who is (yet) able to understand their way of communicating, Michael Bach and Lana Kerzner have proposed ‘facilitated decision making’, which means that the people who know the person best have to make their best guess at what the person wants, or would have wanted, and that is seen as a form of ‘support’ as well.  They have an ongoing duty to help the person develop ways to communicate their will and preferences in whatever ways they are able to.  These ideas have started to trickle down into case law in other countries, for example this judgment by New York Surrogate’s Court judge Kristen Booth Glen.  In an article about her experiences of working in this way, she describes:

‘… the emergence of a real person, one who is learning autonomy and living with dignity… Now, as I conduct guardianship hearings involving young people who have been labeled “severely retarded” and who do not speak-but who, if you watch carefully, are constantly communicating feelings and choices to their trusted family members – I begin to see the spark that Quinn describes. I wonder how much more fully these apparently “totally incapacitated” young people could live their lives in a society that provided them and their caretakers with the supports necessary for them to enjoy and exercise that full legal capacity which, as Quinn writes, “is only the tool by which the ‘person’ asserts him or herself in the lifeworld-in the myriad of tiny daily transactions that make up who we are.’

We also need to talk about how to ensure that supporters themselves get the support they need.  Supporters are sometimes involved in helping people who are going through crises, people who they care about very much, and helping a person in those circumstances can be distressing and challenging.  Some of these pilots – such as the South Australia pilot – offered support to supporters as much as the people they were supporting.  It might be possible to set up peer networks of supporters, to provide facilitators to offer guidance in challenging situations.  There are also issues around safeguards against undue influence and other forms of abuse, and each of these models address those in different ways, but I don’t want to get too bogged down in detail here today.

My point is simply this: there are lots of options out there, if we just looked.  The MCA was originally drafted in the 1990s and it was a progressive instrument for its time.  During its passage through parliament (a decade later), disability organizations lobbied for the inclusion of progressive things like independent advocates and recognition that people should be supported to make decisions.  These formal supported decision making systems are in many ways a natural progression from that.

It would be great to see campaigners and NGOs start to look into these systems of supported decision making, to see how they might be useful for ensuring that people are not disconnected from the support they rely upon to make decisions for themselves, and that support is given proper recognition.  Of course we need more – much more – than legal recognition of supporters, we need to make sure that people actually live in communities where they are surrounded by their natural support networks, and where they can forge new connections with friends, neighbours, colleagues and partners.  Disability rights isn’t about shutting people off from their families and other supporters, being an adult isn’t about making decisions in splendid isolation.  It’s about recognizing that all of us love, connect, depend upon each other, and finding ways to honour and sustain that.

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One thought on “107 Days: Day 32 – Recognising support

  1. A very interesting critique of how far the MCA needs to travel to really move towards recognising the system is deaiing with a real life human being whose life will not have been lived- from cradle to grave- without a myriad of others, from close family, friends, to formal tate support systems. Yet only those who have spent the bulk of their lives in relationship with the person in need of support will really have the full picture of that individuals likes, dislikes, attitudes to things etc. to be able to realistically facilitate decision making meaningfully. Sometimes support staff who have had long contact with the disabled person will gain the ability to communicate meaningfully to gain trust and faciitate decision making also, Problems arise when famiies are in conflict with the system or seek to challenge the ‘care’ system personnel. Here is where the CoP/ MCA tend to take what the ‘professionals’ report as the basis of fact. Families are unable to challenge at present. It is this in the UK that is creating the division and disrust of the MCA system which fails to accept families’ perspectives on an equal footing to the professional view.
    Also the state machinery of social services will often fabricate a case against family PoA’s they are in conflict with regarding decisions on behalf of P, sometimes leading to removal of the PoA and making P subject to their control. How can this be prevented in the case of supporting legal capacity if it is hard to do so when PoA’s have already been given legal rights to act on behalf of P when needed, but do not agree with LA’s views and may be sidelined /’removed’?
    These power imbalances are the heart of the problem for people with disabilities and their families; Mark Neary’s publicly reported experiences highlight this all too well, as do the other people about whom you have written.

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