United Nations Committee publishes draft General Comment on legal capacity and human rights

The United Nations Committee on the Rights of Persons with Disabilities is the monitoring body (and the body that hears complaints) for the UN Convention on the Rights of Persons with Disabilities (CRPD). One of the most important provisions of the CRPD (to me, and probably to readers of this blog as well) is Article 12 – the right to equal recognition before the law. The drafting of Article 12 was said to be among the most controversial of all the Articles of the CRPD, and it has posed some of the greatest problems for ratification by states. The core issues are whether or not states can use what the Committee calls ‘substituted decision making’ mechanisms, and what 'supported decision making' regimes might look like.

In their most recent session, the Committee published a draft General Comment on Article 12, which aims to throw light on the Committee’s position regarding equal recognition before the law and legal capacity. It is a very important document, and the Committee are inviting comments on it before a final version is adopted, to be submitted before the end of January 2014.

MCA Committee - first evidence session

The House of Lords Select Committee on the Mental Capacity Act has published the transcript of its first evidence session, heard last Tuesday 18th June.  This opening session heard from government officials, including John Hall (Deputy Director of Family Justice), Nick Goodwin (Deputy Director of Court Tribunal Fees), Anne-Marie Hamilton (Director of the Social Care Quality and Safety Branch, Department of Health) and Claire Crawley (Senior Policy Manager, Adult Safeguarding, DoH).   The evidence is pretty long (43 pages) and full of interesting discussions - ranging from the Mental Capacity Act (MCA) and the deprivation of liberty safeguards (DOLS) to much broader issues like the conditions care staff work in, the support available to family carers, the role of the Care Quality Commission (CQC) and more.  There were a few bits of the evidence session that were of particular interest to me, but it is well worth reading the entire thing if you're an MCA or obsessive.  Overall, I think the Committee asked some pretty good questions, and there was some pretty persistant probing of officials by some members - it will be interesting to see how these issues get taken up in later evidence sessions.

[Edit 27/06/2013: The second evidence session has just been published, with evidence from Richard Jones, Kirsty Keywood, Nicola Mackintosh and Katie Johnston. It's fiery stuff - well worth a read.  I don't have time to write about it today... maybe on my flight home tomorrow!]

UN Special Rapporteur calls for an end to involuntary treatment and detention justified by mental illness... or does he?

The UN Special Rapporteur on Torture and other Cruel, Inhuman or Degrading Treatment or Punishment, Juan E. Méndez, issued a report and a statement* to the UN Human Rights Council on 4th March this year, in which he discusses medical interventions which override a person’s choices on disability related grounds – including involuntary treatment and detention.  He places them in the context of the UN Convention on the Rights of Persons with Disabilities and discusses their relationships with inhuman and degrading treatment and – in some cases – torture.

UN Convention on the Rights of Persons with Disabilities as the ‘new normative paradigm’ for interpreting norms around torture, inhuman and degrading treatment
The Special Rapporteur’s report and statement are firmly grounded in the normative ordering of the UN Convention on the Rights of Persons with Disabilities (CRPD). Contrary to some recent suggestions that treaties like the UN CRPD simply ‘replicate’ the rights contained in other treaties for people with disabilities, the UN CRPD contains some radical departures from other human rights norms, especially in the area of involuntary treatment and confinement of persons with mental disabilities. The Special Rapporteur stated that ‘the Convention on the Rights of Persons with Disabilities offers the most comprehensive set of standards on the rights of persons with disabilities, inter alia, in the context of health care’ [61]. As we shall shortly see, he is critical of other human rights standards which permit involuntary treatment and confinement of persons with disabilities.

Thought provoking papers on capacity

I came across two fascinating papers this week that I thought I'd share, both of which have interesting implications for that slippery concept we call "mental capacity".  The first was a case report by a medical team who had 'established capacity'* in a patient with partial locked in syndrome (Carrington, S. & Birns, J. (2012) 'Establishing capacity in a patient with incomplete locked-in syndrome', Progress in Neurology and Psychiatry 16(6) p 18-20 - happily the paper is FREE!).  This is one of the first papers I've seen on the communication aspect of mental capacity.  As Tom O'Shea and I were pondering on Twitter, I wonder if this test would have come out differently if the man had been making decisions which his treating team disagreed with.  The paper is also of interest in connection with advance decisions, because whereas before his stroke the man had indicated he would not have wanted to live with partial locked-in syndrome, following his stroke he not only wanted life-sustaining treatment, but he wanted to be resuscitated in the event of cardiac failure.  A lot of the debates surrounding Tony Nicklinson's request for assisted suicide assumed that nobody would want to live in his shoes (yes Polly Toynbee, I am talking about your particularly offensive article), yet a survey conducted last year actually found that a majority of people with locked in syndrome were happy and only a minority wanted to end their lives.  The point (for me) about Nicklinson was about his autonomy to do something non-disabled people would be able to do independently.  We should approach with extreme caution the assumptions people who haven't experienced a condition first hand make about quality of life.  This, of course, has a bearing on the ongoing DNAR debates, but that's another post for another day.

Interesting articles on capacity and deprivation of liberty

There are several brilliant pieces of writing about mental capacity and deprivation of liberty readers might be interested in.

The first is a blog post by Mark Neary relating 'a complete work of fiction' which describes the difficulty a person may have in challenging a detention if it isn't authorised under the DoLS.  The problem is that often authorisation is never sought by managing authorities, or it might be sought but later on revoked because the supervisory body decide it's not actually a deprivation of liberty because the person has nowhere else to go, or their assessors hadn't heard the person object - even though everybody else has, or because the restrictions are 'necessary', or whatnot (assisted, no doubt, by the high level of uncertainty and contradiction in Article 5 case law).  Without a DoLS authorisation there's no more advocacy rights, no more legal aid, no more permission-free routes to the Court of Protection to challenge it.  So getting there requires a huge level of determination and awareness of the legal process, not to mention a hefty injection of your own cash - which you might never see again because of the general rule on costs in the Court of Protection.  Basically, there's a technical right to challenge this "non-detention", but it's pretty inaccessible and comes with a huge price tag.  Cynical supervisory bodies could revoke DoLS authorisations as a particularly sneaky chess move where litigation looks likely, and those deprived of the safeguards will struggle to have recourse against this.  And as Mark points out - and particularly for older people - sometimes by the time these cases actually get heard, a person may have been detained for so long that the odds are stacked against them being released from detention to return home due to skills lost to institutionalisation, declines in health or even homes sold to pay for care or lost tenancies.  Frankly some certainty as to the scope of Article 5, to help detainees and their supporters argue forcibly that the DoLS should apply, cannot come soon enough.  In the longer term, the whole approach will have to be rethought.

A challenge: Re-imagining capacity

Here’s a challenge for you. Is it possible to re-imagine the way we ‘do’ capacity under the Mental Capacity Act 2005 (MCA)? In the years to come, as we confront the challenges posed by the United Nations Convention on the Rights of Persons with Disabilities (CRPD), we will surely have to undertake this task as it casts doubt on many current practices under the MCA (amongst other legislation). One of the most fundamental challenges posed by the CRPD is whether or not imposing ‘substituted decisions’ on disability related grounds is ever permissible; it is this challenge that potentially sets the MCA on its head. I have to confess that I am deeply torn over this. I am not sure the MCA is as bad as some of the caricatures of it that I have read, particularly when one takes into account some of its more enlightened case law, but neither do I think it is as progressive – or indeed safe – as many of its users and supporters would claim. 

But here is the challenge: how else would you do it? A couple of weeks ago I was chatting about the CRPD at the Essex Autonomy Project event on Capacity Assessments: Ethical, Political and Metaphysical Issues. Frustratingly I couldn’t attend Peter Bartlett’s talk on the CRPD, but even before the second day the CRPD crackled in the air. It came up in Tom O’Shea’s talk on the Metaphysics of Mental Capacity (which was great - blog version of it here) and there were discussions over lunch. Chatting about it with people more closely involved in implementing the CRPD than I am I came to feel that one of the key problems with the debate so far is that it is still in such esoteric and abstract realms. There is still very little written about what implementing the CPRD would mean in practice, in detail, particularly in the context of the MCA. So this post is a appeal for an informal, imaginative, but grounded way to explore the 'paradigm shift' of the CRPD.

The legal establishment and the "right" to Independent Living

[Update 01/08/2012: Neil Crowther drew to my attention that a subsequent case relating to housing benefit, Burnip v Birmingham City Council & Anor (Rev 1), rejected the approach of the court in NM v Islington towards the CRPD, discussed below.  In Burnip the court held that the CRPD was a legally binding treaty, and if there was any uncertainty in how domestic anti-discrimination laws should be interpreted, he would use the CRPD as an aid to interpretation.  The ruling in Burnip is reassuring for supporters of the CRPD, but less reassuring are the efforts of the government's own counsel to attempt to marginalise the CRPD's relevance by reference to its maturity and chronology (see paragraphs 19-22).  It seems extraordinary, and rather depressing, that a government should seek to distance itself in this way from a treaty that it has itself ratified!]

It's sad but ironic that the day before the Joint Committee on Human Rights (JCHR) launched its report on the rights of disabled people to independent living under Article 19 of the Convention of the Rights of Disabled Persons, the legal establishment confirmed that it was going to ignore the most important treaty on human rights for disabled people for a bit longer.  In R (NM) v London Borough of Islington & Ors [2012] the claimant was in prison and had "significant learning disabilities" [2], and two councils were squabbling over who would have to assess and meet his community care needs when he came up for parole.  NM had sought judicial review of Islington's refusal to conduct a community care assessment under s47 NHS and Community Care Act 1990, and they were refusing on grounds that he was not 'ordinarily resident' in Islington.  He failed in his claim, and I won't discuss the detail of the court's analysis of domestic community care law here (although Allan Norman of Celtic Knot has done a great job of that here and pointed out the flaws and worrying consequences of the ruling).  What is interesting is that the claimant had hoped to rely in part on Articles 19 and 26 CRPD - the right to independent living (19) and the right to habilitation and rehabilitation (26).  From paragraphs 98-107 the court considers whether the CRPD can be relied upon in domestic courts and concludes it cannot because:

Is Article 12 keeping you awake at night?

Because if you are at all interested in issues around mental capacity and human rights (as I tend to assume readers of this blog are), then Article 12 of the Convention on the Rights of Persons with Disabilities (CRPD) should be giving you pause for thought.  Article 12 is the right to equal recognition before the law of persons with disabilities.  It has been described as the core of the CRPD, and also as a 'paradigm shift', a 'war of ideas' and a 'clash of creeds' (see Quinn, more on this paper below)  Article 12 stands firmly within the tradition of the social model of disability – with a view of disability as a phenomenon that arises out of social barriers, prejudice and discrimination, in contrast to individualised and medicalised accounts.  On this model, what we call ‘mental incapacity’ arises through a combination of discriminatory attitudes and a lack of supports to assist people with disabilities in decision making. Both of these, being social phenomena, are remediable if we undertake work to challenge oppressive attitudes and ensure resources to support decisions are available.  In the final analysis, the strength of Article 12 may rise and fall with the strength of the social model of disability – which, despite its very important insights, is not without its limitations (see Shakespeare, 2006).  In the meantime, however, there is much to be learned from the debates around Article 12, and I hope to explore them more fully in this blog in this post and others yet to come.