This blog is my contribution to airing issues in those areas in which I have usefully overlapping expertise: Autism, Law, Education, Social Care, Health and Criminal Justice.
Some of my Care Act focussed posts are also available on my guest blog at Schwehr on Care
But here I also blog about broader issues.
Feel free to contact me if you would like to discuss any of the issues I raise further or if you have questions or topics you would like to see me post about here.
Meanwhile under the radar ...
While the mainstream media are distracted by Brexit, the government is continuing to rush the Mental Capacity (Amendment) Bill through parliament. The Bill had its second reading in the Commons yesterday.
The good news is that there was a brief debate in which Barbara Keeley (the Shadow minister) gave a well informed speech setting out the Bill's serious flaws in detail and calling for the government to rethink or at least pause the legislative process to allow proper consultation and revision of the Bill.
The bad news is that the government pressed on regardless and the Labour amendment seeking a delay was defeated. The Bill has now progressed to the committee stage.
During the Bill's progress through the Lords, it has been amended in several key respects. The current state of the Bill is as follows:
- The new name - Liberty Protection Safeguards
- NHS responsibility for authorising deprivations of liberty in NHS-funded care
- Requires that the arrangements are necessary and proportionate to the risk to the person themselves
- Now extends to 16 & 17 year olds
- Now uses “mental disorder” rather than “unsound mind”
- Now states explicitly that the adult must be consulted with and their wishes and feelings considered, although it is only a “have regard” duty (which falls a long way short of UNCRPD compliance)
- Now enables Local Authorities to decide whether they or Care Home Managers arrange the assessments and statement, rather than it automatically being Care Home managers for care in Care Homes
- Now says assessments can’t be carried out by someone with a financial conflict of interest
- IMCA decision now made by the LA rather than the Care Home Manager but still on a 'best interests' basis, not a right
- Possibly slightly extended requirements for AMCP to carry out pre-authorisation review e.g. Contact restrictions, covert medication, family objections
Serious concerns remain
- Proposed Role of care home managers is still an “inherent conflict of interest” (Care England) and conflict of interest for commissioning bodies is not addressed at all
- Although local authoritoes can now decide whether to allow care home managers to arrange the assessments and statement, that decision is likely to be affected in the real world by lack of resources because no funding has been made available and shifting the responsibility to care home managers also shifts the cost burden. Local authorities may not have much of a choice.
- Conflict of interest largely left to regulations (which we have not yet seen!). The 'prohibition' on conflict of interest is also a negative rather than positive duty and there is no enforcement mechanism. Essentialy this makes it useless in practice because it means it would fall to the adult to challenge via Judicial Review.
- Pre-authorisation review can still be just a paper exercise not requiring a visit to the setting or actually meeting the adult
- IMCA duty has “appropriate person” get out clause – see Care Act advocacy for how well (or otherwise!) this works in practice
- The promised statutory definition of “Deprivation of Liberty” has not yet made public. There has to be a considerable risk that the government will propose a definition that will move backwards in terms of disability rights from the Cheshire West position
- The fundamental risk remains that, for many people, there will be no meaningful independent scrutiny of their human rights
- The Bill still lacks crucial aspects of the original Commission proposals. In particular it lacks:
- amendment to the MCA requiring that best interests decisions "must give particular weight to any wishes or feelings ascertained"
- restricting the s.5 defence for professionals around important decisions
- power to make regulations introducing supported decision making
- civil cause of action for unlawful deprivation of liberty against private care providers
- The Bill offers nothing on the highly problematic MHA/MCA interface and the government will not wait to coordinate it properly with the proposed reform of the Mental Health Act
- Finally, the Bill still fails to reform MCA to protect Article 8 rights
Overall, despite some improvements as a result of amendments, the Bill remains fundamentally flawed and provides completely inadequate protection for human rights. To quote Barbara Keeley MP:
"Although the deprivation of liberty safeguards need reform, and I agree that they do, the Bill deals with none of the challenges that have been outlined and creates some new problems that cannot be solved simply with further amendments. I am afraid we feel that the Government cannot be relied on to make the necessary changes during the remaining legislative stages given the resistance that they showed to making important changes in the House of Lords. On the contrary, the transformative spirit of the Law Commission’s draft Bill has been squashed, and the measures that would place the best interests of the cared-for person at the heart of the new system have been reduced.
The Government should have enacted the Law Commission’s proposals in full through the 15-clause Bill that was drafted, but instead we have this five-clause Bill. Why did they not simply bring forward the Law Commission’s proposals? The inescapable conclusion that we have come to from reading the Bill is that the Government are more interested in cost saving than in the best interests of cared-for people."
- The government appears (at least in the press release) to have adopted the Law Commission's proposed titling of the reformed system as the "Liberty Protection Safeguards". Names matter. This is to be welcomed because it highlights the positive protection of rights, rather than perpetuating the current confusion. However, see the caveats below about whether the system is worthy of the name!
- Responsibility for authorising deprivations of liberty in hospital or CHC funded will shift to the NHS (as proposed by the Law Commission). This is to be welcomed because it should lead to the NHS engaging more seriously and effectively with issues of capacity, necessity and proportionality when arranging care which involves significant restrictions
- The conditions for authorisation include that the arrangements are necessary and proportionate
- The major concern is that the Bill delegates almost all the responsibility to care home managers rather than the responsible body where (as in the majority of cases) the care is mainly in a care home. This is seriously worrying given that the vast majority of care home managers are employees of private companies (rather than public bodies) which may well have conflicting and competing interests to those of the adults whose DoL is being authorised. Their decisions may be open to challenge on Human Rights grounds (see s.73 Care Act), but this is wholly inadequate protection.
In particular the Bill allows care home managers to:
- provide all the information to the responsible body, including capacity and mental health assessments
- decide who they think appears "to have appropriate experience" to determine whether the arrangements are necessary and proportionate
- decide whether they think the person is or isn’t objecting (and therefore whether they should be referred to an Approved Mental Capacity Professional (AMCP) - an extension of the BIA role
- consult with all the interested parties (meaning that family members may not be heard by anyone else)
- review the authorisation
- decide whether the person is entitled to an Independent Mental Capacity Advocate (IMCA)
- choose the “appropriate person” (equivalent of the current Relevant Person's Representative role - i.e. a key protection for the adults rights).
This essentially leaves adults in care homes at serious risk of their being no meaningful independent scrutiny of whether care is being provided in a way which is consistent with their Human Rights.
- The Bill ignores and fails to enact very important aspects of the Law Commission proposals, particularly:
- the proposed amendment to S.4 MCA to require that best interests decisions "must give particular weight to any wishes or feelings ascertained" (which would have brought the MCA a step closer to UNCRPD compliance)
- restricting the s.5 defence for professionals around important decisions to provide additional safeguards for Article 8 rights and ensure that steps are taken to support decision making and properly consult the person and their family
- the proposed regulation making power to enable supported decision making (a vital step towards UNCRPD compliance)
- the proposed right to bring civil proceedings for unlawful deprivation of liberty against private care providers (a vital protection against the potential conflict of interests between private care providers and disabled adults - which would be even more vital if huge power is given to care home managers as the Bill proposes)
- The proposed safeguards apply only from 18 years upwards. This maintains the status quo under DOLS and ignores the Law Commission's recommendation that the safeguards apply from age 16 (in line with the MCA). This is particularly concerning given the recent and highly problematic case law which essentially allows young people between 16 and 18 years of age to be deprived of liberty on the basis of parental consent (with the resulting divergence in applicability between non-disabled and disabled young people given that the latter are more likely to lack Gillick competence as a result of disability).
- Although necessity and proportionality are required as a condition of authorisation the Bill does not specify in relation to what purpose of detention necessity and proportionality are to be considered (dropping the Law Commission's link with risk of harm. Given that (in 2(1)(a) the arrangements are "for the purpose of enabling the care and treatment of a person", this has the potential to allow Deprivation of Liberty to be authorised on other grounds. It is hard not to envisage the risk of slippage here into considerations of organisational and reputational risk and/or cost, convenience and efficiency of care delivery weighing on the assessment of necessity and proportionality.
- The Bill does not offer a statutory definition of Deprivation of Liberty despite strong support for this from the (probably too recent) Select Committee recommendation in favour of such a definition
- The Bill does not change the status quo on the dividing lines between the Mental Health Act and the MCA. Presumably, in line with the Government's response to the Law Commission proposals
Institute of Mental Health, University of Nottingham, 26-27 June 2018
This conference brought together legal professionals, researchers, mental health professionals, philosophers and ethicists and people with lived experience of mental distress (including many people with identities in more than one category).
Day one started with a plenary on the effects of austerity which focussed on human rights. Extensive commentary of the impact of massive cuts to multiple aspects of the welfare state (benefits, legal advice, education, social care, mental health services) on vulnerable groups, including those with psychosocial disabilities.
This was followed by an array of tempting parallel sessions. I attended one focussed on Mental Capacity.
Alex Ruck Keene (Barrister) and Camillia Kong (Philosopher) gave a preview of their forthcoming book on working with a practical ethical framework in Capacity Assessment under the Mental Capacity Act (MCA). They seek to persuade practitioners to reject a “thin” version of autonomy and instead recognise and engage with the importance of an individual’s full circumstances and relationships (including relationship with the assessor). They argue assessors have an ethical role and should focus on restoring/increasing capacity to promote an individual’s true autonomy.
Paul Hutton (Psychology researcher) spoke on supporting treatment decision making (focussing on those with psychosis but potentially with broader relevance). He noted the degree to which capacity assessors are actually influenced by the perceived wiseness of the patient’s decision and the degree to which the patient agrees with their diagnosis. Turning to supporting decision making, he identified important basic supports such as providing patients with simplified information and ensuring information is repeated. However, he also proposed that metacognitive training and training on information gathering prior to decision making may reduce impulsivity in decision making and increase decision making capacity.
Jim Rogers (Social work researcher) closed out the session with his research on the factors that influence judgements of capacity made by different groups of professionals, highlighting Mark Neary’s description of his son Steven’s latest capacity assessment by way of example. His research found that Best Interests Assessors (BIAs) rated ethics as an important consideration but this was much less true of other professional groups. Interestingly professionals recognised the influence of normative considerations (i.e. social and ethical norms around how the patient ‘ought to’ use or weigh information) but often did not reference the two-stage MCA test or the causative nexus at all (that the mental impairment must be the cause of the patient’s functional incapacity).
The afternoon drew to a close with a marathon plenary on the United Nations Convention of the Rights of Persons with Disabilities (UNCRPD). In lieu of a member of the UN Committee on the Rights of Persons with Disabilities (invited but sadly unable to attend), we were offered an impressive panel comprising members of both the UN and European Committees on the Prevention of Torture (Margret Osterfeld and Georg Hoyer respectively); a UN special rapporteur on the right to health (Dainius Puras), a member of the working group which developed General Comment 1 (Eilionoir Flynn), and a member of the National Survivor User Network with an extensive track record in the field of human rights and mental distress (Dorothy Gould). There was broad support amongst the panel and most of the audience for the UNCRPD goal of equal treatment before the law, but also realism in terms of the need to set intermediate goals seeking to reduce (prior to eliminating) the use of compulsion in the care and treatment of those with psychosocial disabilities and/or mental distress. Some the dilemmas around practical implementation of the UNCRPD were discussed, with particular reference to the background of austerity politics and reductions in services. Risks were identified around: restoring capacity/competence of mentally disordered offenders leading to them being held in prisons instead of hospitals and receiving even worse treatment; patients “rotting with their rights on” where the elimination of coercion was used to justify failures to provide services; that merely removing the impairment requirement from MH and MC law would not eliminate discrimination unless accompanied by the provision of alternatives to coercion (such as ‘crisis houses’ and other good quality, user-led community services). Nevertheless, many panel members (and some members of the audience) argued passionately that striving for the goal of disabled people being and remaining the architects of our own lives is vital to avoid inadvertently endorsing discrimination (by accepting lesser goals of “increasing” autonomy or rights). Whilst the importance of law as a foundation was recognised, it was also strongly argued that we must not wait for changes in the law before starting to change the practice. Good practice examples mentioned included: the Swedish Personal Ombudsman service; the Gateway peer support project; and the Voices project. A final note acknowledged the importance of looking at who is not in the room and making discussion accessible to all groups of service users (which would include less verbal autistics and those with intellectual disabilities).
Day two featured a succession of tough choices between parallel papers. In the first session I resorted to running between rooms in order to hear Mat Kinton (Mental Health Policy Adviser, CQC) propose ways forward from the difficulties created by the current legal position around Conditional Discharge, Community Treatment Orders (CTOs) and Deprivation of Liberty (DoL) as a result of the MM & PJ cases (Supreme Court appeal decisions awaited in both cases). Unsurprisingly anecdotal reports suggest that some professionals are resorting to reassessing individuals previously judged to have capacity to consent to DoL as lacking capacity, in order to access Conditional Discharge for them under DOLS arrangements. Unfortunately the proposed ways forward were not particularly palatable and included extending the Mental Health Act beyond hospitals to authorise deprivation in the community or the use of leave of absence rather than discharge powers (despite the conflict with the MHA Code of Practice on this). Jack Clayton-Thompson (Law researcher) spoke eloquently on capacity as a lifelong project and a vehicle for autonomy which recognises the role of wider social constraints (such as lack of service provision) in limiting autonomy. Referencing Rosie Harding’s research on supporting everyday decisions, he argued for the importance of supporting disabled young people and adults to learn from bad decisions and develop their decision-making capacity. Finally Paul Skowron (Law researcher) tackled the important but extremely difficult issue of the meaning of “best interpretation of will and preferences” (in General Comment 1). He argued that ‘best’ requires us to go beyond a search for the ‘true’ interpretation to acknowledge the process of interpretation and the role of the interpreter. Whilst acknowledging the danger inherent in this approach of producing clandestine ‘best interests’ decisions, he proposes the use of human rights to underpin an open process of interpreting will and preferences in which an interpreter is required to justify how they are interpreting/influencing the person’s will and preferences rather than claiming to know what the person wants better than the person does.
The following session kicked off with Lucy Series (Law researcher) considering how the purpose of the MCA came to be seen as empowerment. Tracing the development of the Act through the original Law Commission focus on issues of consent to medical treatment, the lack of powers for courts to resolve disputes, calls from LD charities for private law guardianship to empower family members and the lack of powers to intervene in situations of abuse and neglect, she highlighted the lack of any original focus on empowerment and instead recognised the MCA as a response to a “spectre of potential liability” for families and care givers acting without formal legal authority in relation to adults who lacked capacity to make their own decisions. This perception of a lacuna (gap in the law) led to the extension of law into areas of everyday life where it had not previously been – actually quite a paternalistic agenda. She identified a late stage in the development of the MCA that repurposed the proposed Act to an anti-infantilising agenda, but as a result of the originating purposes the final Act focussed on providing a shield against potential liability rather than addressing the political question of whether family or professionals should be the substitute decision maker.
Hope Davidson (Law researcher) continued the mental capacity law focus providing an analysis of the Assisted Decision-Making Capacity Act 2015 in Ireland and comparing it to the MCA. She highlighted some changes made late in the legislative process which appear to have shifted the Act away from full UNCRPD compliance and closer to the English MCA model. In particular, the addition of ‘in so far as is practicable’ to the requirement on a person intervening to “give effect, in so far as is practicable, to the past and present will and preferences of the relevant person, in so far as that will and those preferences are reasonably ascertainable” and the addition of “for the benefit of” to the requirement to “act at all times in good faith and for the benefit of the relevant person”. She argued that the overall effect of these changes is to temper and limit the degree to which a person intervening is required to “give effect” to the will and preferences of the adult and instead brings in an element similar to the concept of “best interests” in the English MCA – a construct specifically prohibited by the UNCRPD.
To round off the session we were treated to Peter Bartlett (Law researcher) on how far it might be possible to progress towards Supported Decision Making under the current MCA framework (given the remote prospect of imminent full UNCRPD implementation in England). He began with an analysis of the influence of the UNCRPD on Best Interests decision making in the Court of Protection: highlighting the Court’s engagement with P’s will and preferences, but also raising the caveats of the limited force of the UNCRPD in English law and the tendency in DOLS (rather than BI) cases to go against P’s expressed wishes and preferences. Also highlighted was the tendency for the views of family members to be perceived as biased without recognising that professionals and service providers also bring values to supporting an adult’s decision making and may have conflicts of interest.
The final parallel session considered the case law on capacity to consent to sexual activity (which essentially requires understanding of the mechanics of the act, pregnancy and STDs) and offered the critique that this is a medicalised view of sex which sidesteps the social dimension of sexual intimacy – particularly around consent. Importing a sociological perspective drawing on Nussbaum’s Capabilities approach, Jaime Lindsey and Rosie Harding (Sociolegal researchers) argued that the current approach focusses on the concerns of society around disabled adults engaging in sexual activity rather than those important to the individual and thus tends to justify restrictions rather than entitle adults to support to develop their capacity in this area.
This was followed by Rachel Clawson’s presentation of research from the My Marriage, My Choice project on the forced marriage of adults with Learning Disabilities. She highlighted widespread lack of awareness and understanding of the law on capacity to marry, with families, faith/community leaders, registrars and even some social care professionals often believing that families could make a decision to marry on behalf of a disabled adult.
The final plenary session of the conference focussed on reform of Mental Health law and featured Simon Wessely (Chair of the Independent Review into the Mental Health Act), who sadly was unable to stay for the full session. He set out the broad remit of the review including concerns about rising rates of coercion in mental health treatment, BME discrimination in mental health and the interfaces between the Mental Health Act and both the Criminal Justice System and the MCA. However he also highlighted the current lack of legislative time and money and expressed the view that legislative change alone has limited potential to fix problems. He went on to express the goal of the review in disappointingly limited terms as being to ‘improve the way people are treated and increase dignity and respect’ combined with ‘trying not to make things worse’. Members of the audience sought to engage him on a variety of issues. I raised the issue of the inclusion of Autism and Learning Disabilities in the current definition of mental disorder which he, summarily, dismissed as beyond the scope of the review (despite the statement in the Interim Report that this was “One of the key issues raised in our engagement to date” and the clear inclusion in the terms of reference of “any additional issues with the functioning of the act identified via consultation”). This is a fairly strong indication from the Chair that the review is not willing to address this issue at all.
Other members of the audience expressed concern that the issue of autonomy appears to be taking a backseat and that the review is very focussed on a beneficence view of concepts such as ‘dignity’. Simon Wessely was also tackled on the failure of the review to endorse binding Advance Directives. He justified this by arguing that, elsewhere in the world (such as Ontario), this has led to detention without treatment. Peter Bartlett responded that (as he is from Ontario) he disagreed and pointed out that focussing solely on occasional cases ignores the benefits of autonomy to the majority of patients.
Diana Rose (Professor of User-Led research, Institute of Psychiatry, King’s College London) spoke powerfully of the impact of coercive treatment combined with service cuts on the lives of Mental Health service users. She argued for a culture shift in mental health treatment, away from wards and coercion towards peer support, supported decision making and small safe places in the community, seeing the potential for this to be framed by legislative change.
Colin McKay (Chief Executive, Mental Welfare Commission for Scotland) spoke last and, unfortunately, after Simon Wessely had left. He engaged positively with the possibility of removing Autism and Learning Disability from the scope of Scottish Mental Health law, highlighting the Mental Welfare Commission’s concerns about the lack of progress on inappropriate detentions in Assessment and Treatment Units (ATUs). He outlined some of the key developments in Scottish Mental Health law including the separation of detention from compulsory treatment and the requirements of the Mental Health (Scotland) Act 2015 for ethically justifiable grounds for compulsion based on Significantly Impaired Decision Making Ability (a similar concept to capacity), benefit, risk and necessity, stronger advocacy provision and greater weight for advance decisions. However he also acknowledged that levels of compulsion in mental health care have not fallen in Scotland (although they are lower than England).
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