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Eleanor Roosevelt, 1958

'Where, after all, do universal human rights begin? In small places, close to home -- so close and so small that they cannot be seen on any map of the world. Yet they are the world of the individual person... Unless these rights have meaning there, they have little meaning anywhere. Without concerted citizen action to uphold them close to home, we shall look in vain for progress in the larger world.' Eleanor Roosevelt, 1958

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Saturday 21 May 2011

Why are there no deprivation of liberty safeguards in supported living?

The deprivation of liberty safeguards were drafted in the aftermath of the ‘Bournewood judgment’ (HL v UK), where the ECtHR commented on the “dearth” of regulation and safeguards for the detention of people who lacked mental capacity, in comparison with those detained under the Mental Health Act.  The safeguards are set out in Schedule A1 of the Mental Capacity Act 2005 (MCA), and apply to detention in care homes and hospitals. The DoLS provide a set of administrative and legal procedures to ensure that anyone deprived of their liberty has access to safeguards to allow them to challenge the lawfulness of their detention, and ensure restrictions are proportionate and necessary.  A question that has bothered me since researching the safeguards is why they only apply in care homes and hospitals when increasingly care in the UK is provided through alternative structures like supported living (usually for adults with learning disabilities) or extra-care housing (usually for older adults).


Some time ago I requested the responses to the government’s various consultations relating to the safeguards, and it looks as if I wasn’t the only person who felt these structures should fall within the scope of the safeguards.  Responding to the original ‘Bournewood Consultation’ in 2005, the British Psychological Society wrote:
The BPS has some concerns about the assumption that extending the framework to include care homes as well as hospitals will be sufficient.  With the expansion of community care over the past decade, people with cognitive impairment are now cared for in a broader range of placements including packages of care into their own home or into non-registered community homes.  The BPS believes that the principles underpinning this consultation should be applied to all people who lack mental capacity and not just people resident in hospital or in registered care homes
In response to the same consultation, Age Concern wrote:
We agree that, although the case which has lead to this consultation was in relation to deprivation of liberty in hospital, it could equally apply to those who lack capacity and who are in care homes. Given the current trend towards extra care housing we recommend that the Department of Health considers other types of housing care when formulating these proposals.
The most strongly put submission on this point was by the Commission for Social Care Inspection themselves, responding to the Department of Health and Ministry of Justice formal consultation on the deprivation of liberty safeguards (cp23/07):
We made the point in our 2005 formal response to the Bournewood proposals that deprivation of liberty can occur in social care settings other than care homes, yet people subject to this in other settings would not benefit from the safeguards.  Our joint investigation with the Healthcare Commission into services provided for people with learning disabilities at Cornwall Partnership NHS Trust revealed deprivation of liberty issues in many of the supported living houses.  Although these were found to be operating as care homes, it indicated that the local monitoring and governance arrangements did not identify this as unlawful deprivation of liberty.  The expectation that outside of hospitals and care homes, such cases will be brought to the attention of the Court of Protection could be over optimistic.
Partnerships in Care also suggested that when the government estimated figures of how many people might need the protection of the safeguards they include services like supported living and rehabilitation centres, in addition to traditional residential care and hospital services.  Despite these expressed concerns I could find no mention of the issue in the government’s own reports on the consultation process, so I went digging with the Freedom of Information Act...

The basis of the decision not to extend the DoLS to supported living

I wrote to the Department of Health seeking information on what the decision not to include supported living in the DoLS framework was based upon. You can read the full response to my request here if you want. However, to summarise, this is what I have found out.
  • The Department of Health did not base its decision not to extend the DoLS framework to ‘supported living’ or ‘extra care’ services on any research, nor does it hold any research on this topic, and it is not aware whether any such research exists. 
  • The reasoning underpinning the decision was as follows: 
“The Deprivation of Liberty Safeguards were designed to address a specific problem - that was highlighted by the ‘Bournewood’ case. The Government amended the Mental Capacity Act 2005 specifically to address people who were living in a hospital setting or a care home setting. The Government did not include supported living because it considered it less likely that severe restrictions would be placed on people in supported living arrangements, who would tend to lead more independent lives.” 
  • There is no written correspondence or minutes of any meetings giving more detail as to why the government considered it less likely that deprivation of liberty would occur in supported living arrangements. It’s always difficult to draw conclusions from a lack of documentation, but it does seem as if the issue raised during consultation was not pursued in any significant way. 
  • I also asked if the government had based its original decision on any estimates of the numbers of people who might be deprived of their liberty in supported living. Rather bizarrely, the DH responded to this question by giving me a copy of a ministerial briefing dated March 2011 on the P & Q ruling, which you can read here. This has sections redacted out under the s35(1)(a) FOIA exemption, on the basis that it pertains to the formulation of government policy; this despite the fact the DH later states they have no intention of reviewing the scope of the DoLS. I’ve appealed their response to this question, since any statistical data which formed the basis of an already taken government decision (and this decision was taken during the passage of the Mental Health Act 2007), is subject to a limitation on that exemption. It is possible the decision was based on some statistics of the scale of supported living use, but their response doesn’t really make this clear. 
  • I also asked if the DH were keeping track of how many cases of deprivation of liberty were occurring outside the DoLS but being authorised by the Court of Protection. They responded that they were not. I can’t see any obvious reason why this data could not have been collected from supervisory bodies when they submit their quarterly DoLS data
So in essence, the picture seems to be this: despite several consultation respondents – including the regulator for social care themselves – expressing the view that supported living should be included in the DoLS, the DH decided not to.  They based this decision on an assumption that people in supported living would be subject to less restrictions.  They did not commission or seek out any research to confirm this assumption, nor do they hold any records suggesting they engaged in meetings or correspondence checking this assumption out further.  It’s especially concerning that they took this approach at the very same time as one the most serious recent cases of large-scale deprivation of liberty and abuse of adults with learning disabilities was uncovered in Cornwall, in supported living accommodation (CSCI, 2006). 


Can a person be deprived of their liberty in supported living?

In short, yes.  Out of the published Court of Protection cases, Salford CC v JG (2008) was the first to authorise deprivation of liberty in supported living accommodation.  Because the safeguards don’t apply, the court set out guidelines for detention in settings outside the scope of the DoLS, which included a requirement that the public authority seek authorisation from the Court of Protection under s16 Mental Capacity Act (MCA), and the court must review the authorisation at least annually.  This clearly has enormous implications for legal costs and staff time, far surpassing the procedure under the DoLS.  The strain seeking authorisation directly from the court would place on both supervisory bodies, the Official Solicitor and the courts themselves is mentioned in several judgments (Re RK (6-13), P & Q (4-5)).  It seems to me highly likely that this alone would act as a disincentive to Article 5 compliance.

In the case G v E (2010) Baker J found that E had been unlawfully deprived of his liberty when he had been removed from the care of his foster mother on the basis of safeguarding allegations, and placed in supported living accommodation.  Baker J commented that:
Mr. Y, the manager of X Ltd, did not accept that his organisation was depriving E of his liberty. He thought he was improving his quality of life, and he may well be right. In my judgment, however, the current care provision for E undoubtedly deprives him of his liberty. Staff at Z Road exercise what the Official Solicitor describes as complete control over E's care and movements, and over assessments, treatment, contacts and residence. As Mr. Allen points out, the concrete situation is that E is currently confined to Z Road except when he is escorted to school or on visits or activities, and has no space or possession that is private or safe from interference or examination. Miss Street, counsel for the Official Solicitor, observed that E is unable to maintain social contacts because of restrictions placed on access to other people, including family members, and a decision has been made by the local authority that he will not be released into the care of others, or permitted to live elsewhere, unless such a move is considered appropriate. In assessing whether he is at liberty, it is also important to note that E has been prescribed Haloperidol, a neuroleptic medication, to reduce his agitation and more challenging behaviour. He has no control over the administration of that medication.
The court’s judgment appeared to rest on the ‘complete control’ exercised by the care provider.  However, following the P & Q in the Court of Appeal, a court hearing the case today would probably be more likely to find that E was deprived of his liberty because of his objections, not because he was subject to ‘complete control’ of care staff.  The P & Q judgment emphasised that deprivation of liberty was not so much related to the degree of control exercised over someone, or a lack of choice, but to do with the ‘normality’ of the setting and whether they objected to their confinement there.  The Ministerial briefing on the P & Q judgment emphasised that P and Q were subject to similar levels of restrictions as other people in supported living.  However this emphasis ignores the equally important ‘objections’ aspect of the ruling.  I can think of no a priori reason why a person should be any less likely to object to their confinement in supported living than a care home, and even if there were one – this evidently formed no part of the reasoning behind the DH’s decision to exclude those settings from the DoLS.

Is supported living a ‘normal’ setting?
In P & Q Wilson LJ found that the more ‘normal’ a setting the less likely deprivation of liberty was to be occurring in it.  For Wilson LJ care in the family home was the most ‘normal’ (even for an adult - another debate for another day), he then went on to say:
... even when the person lives in an institution rather than in a family home, there is a wide spectrum between the small children's home or nursing home, on the one hand, and a hospital designed for compulsory detentions like Bournewood; and it is in my view necessary to place each case along it. [28]
A few years ago the Joseph Rowntree Foundation (JRF) produced an excellent research paper on supported living (‘Support for Living’).  One of their findings was that the degree of independence and choice experienced by people in supported living varied significantly, and a key factor was whether they lived alone or in shared accommodation.  Where a person lived on their own support staff were more likely to regard it as the person’s own home, and respect their rights accordingly.  Where a person lived with several others in supported accommodation support staff were more likely to slip into practices and attitudes reminiscent of residential care, depleting people’s choices and independence.  They commented:
'Worryingly, there were also indications that the rapid expansion of self-styled supported living schemes, following the sudden availability of Supporting People monies, may have diluted the meaning of ‘supported living’. Schemes based on shared tenancies with accommodation-based support were sometimes little different from the registered care homes they had replaced. This was particularly true where services ignored some of the key legal and ideological differences between supported living and care homes – for example, the importance of tenancy rights; the belief that staff should not have offices in people’s homes; the belief that tenants should control access to their own homes.'
The dilution of the principles of supported living has also been commented on by Peter Kinsella of Paradigm UK.  He emphasises that the original vision of supported living was to give people with learning disabilities the same choices and rights that adults living in their own homes would have; in essence as ‘normal’ a life as possible.  Rights to choose where they live, who they live with, who supports them and how, what happens in their own home, support to exercise the same rights and responsibilities as other citizens.  These ideals underpin the ‘Reach Standards’ (www.paradigm-uk.org) which informed the Department of Health’s vision of supported living set out in Valuing People.  However, the findings of the JRF cast doubt on the extent to which they have succeeded in that.  In particular it was noted that people in shared accommodation often exercised little choice over where they lived or who they lived with, and whilst they might have some role in the staff recruitment process they found no instances where people could choose who supported them.  They also found that whilst support staff emphasised the ‘responsibilities’ of tenancies, policing ‘tidiness’ for instance, they rarely emphasised the ‘rights’ of tenants.  They found examples of supported living where staff had offices in what was supposed to be a person’s own home, and staff holding front door keys that they used to let themselves in without necessarily seeking permission or limiting this to emergency situations.

Interestingly, this is an issue that was brought up in the G v E case by counsel for G, Kerry Bretherton.  Bretherton argued that since E lacked capacity to enter into a tenancy agreement, and since ‘staff have unrestricted access to his room and provide necessary services’ E could never have ‘exclusive occupation’ of the property which underpins tenant’s rights of possession. In the event the issue was not taken up in the Court of Appeal because E had moved back to his foster carer, but it caused a small stir in social care circles.  If the courts had agreed with Bretherton that these circumstances cast doubt on the validity of a tenancy, it could have far reaching consequences for the future of supported accommodation for people who lack capacity to enter into a tenancy agreement.  Especially for those who, like E and like MEG, are subject to a high level of supervision and control and effectively lose the ability to exercise autonomy over who enters their home, and what occurs in their home (see this article for more discussion).  If you’re interested in this issue, you can read more about tenancy rights for people in supported accommodation at the Real Tenancy Test, and there is also some discussion over what the CQC regards as a ‘true tenancy’ in their information on registered locations (p5-6).  (Interestingly, it looks as if the CQC used to take a tougher line on this in their earlier guidance than their revised guidance would suggest).

In any case, the findings of the JRF suggest that whether supported living delivers the promise of a ‘normal life’, with the ‘normal’ rights and choices an adult would expect to exercise over their home and day to day, very much depends on the practices of the staff – not the legal status of the establishment.  The fact a person lives in a ‘normal’ property, as opposed to a purpose built care facility, does not necessarily mean staff had relinquished those practices which restricted choice and independence in traditional residential care establishments.  The key is in the detail of the degree to which a person exercises choice, experiences privacy and is free from the control of staff.  In my personal opinion, the degree of control exercised by staff over MEG in her care home suggests her life is far from ‘normal’, and she is at heightened risk of excessive restrictions on her rights in comparison with people who require less support.  The fact this is necessary to keep her safe is neither here nor there in whether Article 5 is engaged or not, but is only relevant to the question of best interests.  Evidently the courts did not feel the same way, which must have come as a great relief to the Department of Health, and one wonders if there was a degree of circularity between the original decision not to include supported living, and decisions by courts that care in supported living would generally not require authorisation for detention.

Do people in supported living need safeguards?
The effect of the decision in P & Q will be that fewer people in supported living will be found to be deprived of their liberty on the basis (quite possibly misguided) that it offers them a more ‘normal’ life than people in large detaining institutions.  However, there will still be people – like E – who are deprived of their liberty not because of the ‘normality’ of their life, but because they object to their placement there.  For people in this position, unless the detaining authorities recognise that they are deprived of their liberty and seek authorisation from the courts, they will have few opportunities to challenge the lawfulness of their detention.  Without the safeguards there is no right to request that supervisory bodies assess whether they are deprived of their liberty or not.  Without authorisation under the DoLS no ‘representatives’ will be appointed, and they will have no automatic entitlement to legal aid.  Although the courts should review the situation annually as a result of the JG judgment, there is no permission and fee-free mechanism for the detainee or their family to bring the case before the courts.  Although IMCA’s can be appointed for a range of reasons, including a change of accommodation, there is no duty to consider whether a person deprived of their liberty outside the scope of the DoLS is in need of a specialist DoLS IMCA.

We have no idea how many times public authorities or care providers have sought permission from the Court of Protection to deprive someone of their liberty in supported living.  The Department of Health does not keep track, however the Court of Protection was able to tell me that permission to detain has been sought under s16 MCA a total of 56 times by December 2010.  This is a very low figure, and may well include multiple requests in relation to the same person or settings other than mainstream supported living (for instance, where a person is cared for in their own home by staff paid for out of a compensation settlement, or extra care housing).  Aside from the cost and time disincentives to applying for authorisation, it seems very possible that the widespread ignorance of the DoLS is compounded in supported living as it was never a target of the DoLS implementation and education campaign.  Indeed, in G v E the managing authority of the care home appeared entirely ignorant of the DoLS, as did the staff arranging E’s care – it was only the involvement of an IMCA in the safeguarding proceedings that alerted the authority to the issue.  The combination of ignorance and cost disincentives means it is highly probable that there will be people who are unlawfully deprived of their liberty in supported living accommodation in contravention of Article 5.  However because there are a lack of safeguards available to these detainees, the chances of public authorities receiving a legal challenge in these cases will remain relatively low, creating little pressure for improving compliance or reform of the DoLS.  The reality of the situation for people deprived of their liberty outside the scope of the safeguards is that the ad hoc ‘procedure described by law’ is inaccessible, unwieldy and expensive.  For these detainees, the situation doesn’t seem much better than it was in Bournewood all those years ago.

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