Today's legal capacity conference... in 100 (or so) tweets

If you couldn't make it to today's conference on Supported Decision-Making, organised by the Centre for Disability Law and Policy and Amnesty Ireland, then fear not!  For I live-tweeted the whole event in a twitter marathon and have 'storified' it so you can read it here without even needing to venture onto Twitter.  So, if you want to know what Gabor Gombos, Gerard Quinn, Cher Nicholson, Maths Jesperson, Rory Doody, Ignacio Campoy Cervera, Aiofe Day and Colm O'Gorman had to say about supported decision making, legal capacity and the Irish Law Reform process, then read on!  Amnesty will also be posting videos of the event on their website, here.

It was a brilliant day, really thought provoking.  I think the best thing about today was moving away from talking about problems towards discussing solutions.* I'm busy wondering how we can persuade some enterprising UK and/or Irish NGOs to set up a supported decision making pilot modelled on the South Australian project, or getting mental health teams to look into commissioning projects modelled on the hugely successful (and money saving...) Personal Ombudsman scheme...  Any thoughts?  If you want to read more about the amazing Personal Ombudsman scheme, I've just found a link to another presentation (doc) by Maths Jesperson which covers a lot of the same ground as today's talk.

*I don't mean the problems should be ignored, it's just that sometimes it feels as if this is the only conversation we are having, and we lose sight of the exciting work that is being done on supporting decision making.

Donate to Action Aid for the Bangladesh factory collapse victims

This isn't about capacity or care, but it is about human rights.  I'm sure you've all heard about the collapse of the garment factory in Bangladesh this week, killing at least 300 people and injuring over 2000.  Inspectors had warned that the factory was unsafe only the day before and requested evacuation and closure.  The factory supervisors refused, the workers continued to produce clothes by Primark, Bennetton, Monsoon and other high street brands in the West, and the factory collapsed the next day.

In the short term, the priority is clearly to get aid to the trapped and injured workers, and their families.  Victoria Butler-Cole (of 39 Essex Street fame) has set up this great 'Tax your T-Shirt' site where you can donate to Action Aid to support victims of the disaster.  There are, however, much more fundamental questions about the rights of workers who make the clothes we wear.  If you are interested in finding out more about who is making your clothes, their rights and how you can help to improve conditions in the global garment industry, you could check out the work of Labour Behind the Label (you might want to see what the brands you buy are doing to improve working conditions).

When is a Direct Payment, not a Direct Payment?

Direct Payments were introduced in the 1990's, after much lobbying by disability campaigners, to allow users of local authority care services to receive cash in lieu of state-arranged services to meet eligible needs under the many and various community care laws.  The idea was to give people greater choice and control over the way their support needs were met - so, for example, instead of relying block-contracted or local authority providers of domiciliary care, a person could use the cash to employ a personal assistant (PA) - giving them control over important things like who supported them, when, and on what terms. (If you've never dealt with a domicilliary care provider, you might not appreciate what a struggle it can be just to get them to send you somebody you like, or at least don't mind, and at a time that is convenient to you.  You might get a multitude of workers turning up at all hours of the day except the ones you want, staying for 15 minutes while you explain your particular care needs, then having to bugger off again to travel halfway across town (worker unpaid for that time, more likely than not) to offer somebody else a choice between having a wash or having breakfast as they're running late.  Did working in domicilliary care leave me cynical?  Well, it's not just me, see the EHRC report on home care services).

To return to the topic, direct payments are bloody brilliant for some people, but they don't work for everyone.  In particular, they're not brilliant for people who aren't able to manage the complex accounting, commissioning and employment (if they use a PA) side of things, or haven't got anyone else willing to do so on their behalf.  Various people have raised 'safeguarding' concerns about privately arranged care, but they're too complicated to discuss here.  Also, even though Direct Payments were about giving people more choice and control, you might find that the level they're set at is so low the only 'choice' you have is the cheapest service on the market.  And, increasingly it seems, local authorities are finding ways to continue to exercise a degree of control over how you spend the money...

Human Rights will be in touch

[Update 05/05/2013: Since this post, events have moved on.  The court has published a transcript of an earlier hearing of the case, and Lord Judge and Munby LJ have issued this guidance on committal hearings.  The guidance reiterates that all committal hearings should either be held in public or it should be stated in public that a person has been committed - including their name and details of why.  This was already what the court rules required, and this was what Cardinal J did in this case (read on for more details), but the new guidance also states that committal hearings should be listed (I have no idea if this case was) and that an anonymised transcript should be produced at public expense and posted on Bailii.  This, I think, is a very welcome development.  Before jumping to any conclusions about Wanda's case from what you read in the press, I strongly urge you to read this transcript of the earlier hearing.]

Whatever you think about Wanda, that has to be the best voicemail message of all time.

Yes, belatedly the Daily Mail has cottoned on to a case that has been on MHLO since at least last November (at least, that's when my complicated case cataloging system says I added it).  Wanda Maddocks was jailed by a Court of Protection judge for breach of various court orders in relation to her father, who was in a care home under a deprivation of liberty safeguards authorisation (incidentally, unlike the MHA, there is no offence of helping a person under a DOLS authorisation go AWOL).  The Daily Mail would have you believe 'that it is only thanks to persistent inquiries by the Mail that we know of her fate at all — for the court heard the case in secret and chose not to publish the ruling containing details of her sentence.'  This is a somewhat bizarre claim to make, not only because the judgment was published on MHLO (albeit not on BAILII until today), but even according to the Mail the judge 'ordered the doors of his courtroom in Birmingham to be unlocked and told ushers to announce in the corridor that members of the public were free to come in.'.  What the judge didn't do was ring the press - and neither did Wanda herself, by all accounts, since the Mail only cottoned onto the case eight months later.

What orders did Wanda breach?  According to the judgment there were two:

On 19th May District Judge Owen made an order that the respondents should not encourage JM to leave or to ask to leave his placement, or discuss with him the possibility of moving back home, or remove him from the jurisdiction of the court. The reason why that order was made was because there was a history on one occasion of John Maddocks being removed from the Home where he was situated and, indeed, taken to Turkey for a short period. That, I think, in contravention of Deprivation of a Liberty safeguards order. [4]

and

On 19th May District Judge Owen made a fuller order restraining, inter alia, Wanda Maddocks, the third respondent, from using or threatening violence against her father or any employee of the applicant or the AH home, or instructing, encouraging or in any way suggesting any other person should do so. She was further forbidden from intimidating, harassing or pestering her father or any employee of the applicant Local Authority or the AH home. It is mistyped as AR home in the orders, but that matters not as she knew full well what was involved. [5]

Taking Stock (book your place!)

Every year, Cardiff University and Manchester University, together with Irwin Mitchell and 39 Essex Street, put on a conference called 'Taking Stock', which reviews developments under the Mental Health Act and Mental Capacity Act.  I went in 2011, kicked myself for not attending in 2012, but am planning to go this year.  The conference always has a great blend of academics, legal practitioners, usually a judge as well, and guest speakers.  Last year's speaker was Ruby Wax (who you probably know as a comedian, but who has also experienced depression herself and set up Black Dog Tribe in response).  This year, Professor Elyn Saks will be speaking. Professor Saks is a mental health law academic, but she has also spoken about her own experiences with schizophrenia - most notably in this TED talk.  Hopefully I'll see some of you there!

Event: Supported Decision-Making in Theory and Practice - Ireland's Capacity Bill

If you are interested in the debates about reform of legal capacity legislation in the wake of Article 12 of the UN Convention on the Rights of Persons with Disabilities, then you should hot foot it over the Irish Sea (or not, if you're already in Ireland) for a fabulous one day conference on supported decision-making in theory and practice on 29th April 2013.  The conference is organised by Amnesty in conjunction with the Centre for Disability Law and Policy, NUI Galway (where I'm currently working), but I'm not just promoting it because I work here, the line up is fantastic and anyone with an interest in this area is sure to find it interesting.

The context, of course, is that Ireland are in the process of introducing new legislation to replace the nineteenth century ward of court system.  Draft bills from 2008 looked a lot like the Mental Capacity Act 2005, and it's fascinating (given that most NGOs in England seem to think the MCA is the best thing since sliced bread) to see that it has met with tremendous resistance in Ireland from a broad coalition of NGOs, inspired by Article 12 CRPD.  If you haven't a clue what I'm on about regarding Article 12 CPRD, you should read this submission by the Centre on the draft mental capacity bill, and (if you have access to it) you should read the paper by Dhanda (2006-2007, Legal Capacity in the Disability Rights Convention: Stranglehold of the Past or Lodestar for the Future. Syracuse Journal of International Law and Commerce, 34, 429.)

The event is especially exciting as it includes speakers who have been involved in the drafting and interpretation of the treaty, including Gábor Gambos who sat on the UN CRPD Committee.  The mid-morning sessions include two speakers with first hand experience of promoting supported decision making.  Cher Nicholson worked with the Office of the Public Advocate in South Australia on a project which trialled supported decision making for people who might otherwise have been subject to guardianship orders (read about it here).  Maths Jesperson has experience of the Swedish Personal Ombudsman system - which is often mentioned in writings on Article 12, but there aren't any evaluations of it published in English so I'm especially excited about hearing about it first hand.  The afternoon speakers will consider supported decision making in the context of children.

There are also spaces in the programme for facilitated discussions and a hefty 45 minutes given over to questions and answers.  So all those burning questions about the support paradigm, what Article 12 means, and so on, can be aired then.

Hope to see you there!

The programme is as follows:

9:00: Registration

9:30: Registration Colm O’Gorman (Executive Director, Amnesty International Ireland) opening address

Morning Session: Will and preferences in the UN Convention on the Rights of Persons with Disabilities

9:45: Gábor Gambos (former member of UN Committee on the Rights of Persons with Disabilities)

10:15: Gerard Quinn (Director, Centre for Disability Law and Policy, NUI Galway)

11:00: Tea and Coffee

Mid-morning session: Theory to practice: supported decision-making in everyday situations

11:20: Cher Nicholson (Co-coordinator, South Australian Supported Decision Making Project)

12:05: Maths Jesperson (Swedish Personal Ombudsman system)

12:35: Facilitated group discussion

13:00: Lunch

Afternoon session: Supporting will and preferences, including in children

14:00: Domestic speaker TBC

14:30: Ignacio Campoy Cervera (University of King Carlos III, Madrid)

15:00: Questions and answers

15:45: Gerard Quinn – wrap up

16:00: Close

When? Monday, 29 April 2012, Radisson Blu Hotel, Golden Lane, Dublin 8

How much? €50 per person; €10 unwaged.

BOOK HERE

There's always something or other with Mr Neary

Some of you might recall that infamous line from Neary v Hillingdon (paragraph 56), that 'something or other' being in that case that his son was unlawfully detained.  I have read a tremendous amount of research about carers of people with learning disabilities - often critically considering their attitudes towards risk, empowerment, and so on.  Much of that research seems to take at face value that social services actually do what they say on the tin, that the values of Valuing People, Putting People First and so on are delivered upon and carers are just being awkward and obstructive to those goals.  I find a lot of this research incredibly frustrating, as it seems inattentive to the realities for people grappling with the systems which are supposed to be implementing person centre care.  Following up on his brilliant book Get Steven Home, Mark Neary has written a second book describing his experiences of grappling with the adult social care system in general.  It covers many of the topics discussed in his excellent blog.  You can purchase the book here.  I'll leave it to Mark, in typically entertaining and poignant fashion, to introduce it...

I wrote Get Steven Home in 2011 and the response was phenomenal. It still knocks me sideways when I hear that the book is essential reading on several social work courses. My motives at the time of writing the first book were pretty selfish; they were trying to make up for 35 years. When I started my A Levels, my plan was to go to university and study English and Politics and then hopefully get a job in journalism. Then at 16 my mother died and I told myself that my place was at home. It took three and a half decades to finally get something in print but the impact has been so rewarding.

No longer early days

It is now four years since the deprivation of liberty safeguards came into force in England and Wales. The DoLS are complex, cumbersome, badly drafted, poorly understood, but they are no longer new. In those four years, some areas have really taken up the challenge of the DoLS with gusto, developing expertise and applying them with a real passion for human rights and a solid understanding that the very point of DoLS is to create a space where their own decisions can be scrutinised, questioned and held to account. It is not a comfortable space to work in, to be sure, but there are practitioners out there who do it extremely well. But as the CQC’s most recent monitoring report on the DoLS, published last week, showed – this is still not the picture across the country, far from it. And after four years, I do not think we can pin these problems on 'teething troubles' any longer, and hope they will just sort themselves out.

What did CQC’s latest report say? Oh... same old, same old, really. The DoLS are really complicated and they found evidence of poor understanding of them in care homes and hospitals.  Compliance with the MCA itself is pretty poor too – capacity assessments not conducted or (weirdly) outsourced to relatives; “best interests” decisions do not betoken a process compliant with s4 MCA. Restraint isn’t identified as such, and so measures are not taken to scrutinise it, restrict its use and apply the DoLS where necessary. There are huge regional variations in rates of application and authorisation, and whilst some providers and supervisory bodies might like to tell themselves that low levels of DoLS applications and authorisations reflect excellent practice, the CQC slapped that explanation down: