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.
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).
In the matter of D (a child) 
Keywords: Deprivation of liberty, mental capacity, consent, children
The pendulum has swung back again on the law surrounding deprivation of liberty for 16 and 17 year olds. The Court of Appeal has reversed the judgment of Keehan J, holding that parents can authorise the deprivation of liberty of 16 and 17 year olds.
The case concerned D who was born in April 1999 and had ASD, ADHD, Tourette’s and significant behavioural difficulties. D was being cared for in a situation in which he was subject to continuous supervision and control (thus meeting the Cheshire West acid test as being deprived of his liberty). D had been assessed by his treating consultant as lacking capacity to consent to his residence or care arrangements or to any deprivation of liberty.
In a series of judgements, Keenhan J considered D’s situation through his residence in a series of specialist residential placements under s.20 arrangements with the local authority and with the full approval and consent of his parents. He held that parents can consent (benignly and in the interests of the child) to the confinement of a child under 16 in circumstances which would otherwise amount to a deprivation of liberty, but that parental consent was insufficient to lawfully authorise the confinement of 16 and 17 year olds.
Munby LJ held that, where a child of 16-17 cannot make the relevant decision for themselves, the consent of someone with parental responsibility is sufficient to mean there is no DoL that needs authorisation, even if the other elements (the acid test and imputability to the state) are met. Essentially that the parents of a 16 or 17 year old can give substituted consent on their behalf if they lack the capacity to consent themselves.
Munby LJ was at pains to reject the local authority’s argument about the consequences to public resources of decisions around Deprivation of Liberty, stressing the importance of both the substantive and procedural requirements of Article 5 in protecting fundamental rights.
There were 3 grounds of appeal:
(1) That it was wrong to say that a parent cannot consent to arrangements which would otherwise amount to a deprivation of liberty for a child who has attained the age of 16;
(2) That it was wrong to say that the arrangements for D were attributable to the state;
(3) That D’s Article 5 rights were already sufficiently protected by the monitoring requirements of s.20 Children Act.
Addressing ground (2) the issue of state imputability, Munby LJ, had little difficulty rejecting the appeal on that ground and agreeing with Keehan J that the involvement of the state was comfortably of a degree which, at least, triggered the positive obligation to uphold Article 5.
He also concluded with little difficulty that the monitoring arrangements provided under s.20 Children Act (Regular Looked After Child Reviews chaired by an Independent Reviewing Officer) were insufficient to satisfy the requirements of Article 5 and rejected ground (3).
The bulk of the judgement focussed on ground (1) i.e. the issue of whether a parent can provide valid consent to confinement in conditions which would otherwise constitute a deprivation of liberty on behalf of a child of 16 or 17.
Munby LJ began his analysis by considering the situation of a typical young child living with their parents in a private home, reasoning that the child was under complete supervision and control and not free to leave (thus satisfying the Cheshire West “acid test”) but also accepting that the child was not deprived of his or her liberty within the meaning of Article 5. Recognising that, in those circumstances, Article 5 would not be triggered because the state was not involved, he proceeded to consider a hypothetical child living with local authority approved foster-parents in circumstances where (for whatever reason) the child’s own parents could not or had not consented to the placement. In those circumstances, he argued, the state would be involved but the parents had not consented and the foster carers lacked the authority to consent. Did it follow that the child was therefore within the meaning of Article 5 deprived of his or her liberty, and, if not, why not?
[It is rather difficult to seek how the hypothetical foster child is truly a helpful basis for reasoning, since the judgement does not mention the independent judicial scrutiny provided in the process of seeking a Care Order in order for a child to be placed with foster parents without the consent of a parental responsibility holder.]
Munby LJ found that Nielsen v Denmark (1988) 11 EHRR 175 (which concerned a 12-year-old child) provides that there are circumstances in which the consent by a "holder of parental authority" – in domestic terms, someone with parental responsibility – will provide a valid consent to confinement in circumstances which would otherwise constitute a deprivation of liberty. Those circumstances, although "extensive", are not "unlimited.", but he saw them as circumscribed by two factors: (a) whether the parent was motivated by the child’s welfare and (b) whether the child had ‘Gillick’ competence to consent on their own behalf.
Applying this reasoning to the facts, Munby LJ allowed the appeal on ground (1), concluding that D was not Deprived of his Liberty within the meaning of Article 5 because D’s parents were clearly motivated by his welfare and D did not have Gillick competence to consent on his own behalf.
In terms of practicality this judgment will undoubtedly be a great relief to many local authorities.
The position it creates is one where, for decisions regarding an illness and some form of protective treatment:
- Under 16: a parent can consent, regardless of capacity and regardless of views of the child.
- An under 16 year old Gillick competent child can ALSO consent. Or refuse, but parent can consent over the top of him or her.
- Over 16 and has Gillick competence: child can consent. Parent cannot intervene to refuse.
- Over 16 and lacking Gillick competence parent can consent using PR.
The question which remains somewhat unclear is how and when the MCA may also apply with regard to 16 and 17 year olds.
The Court of Protection could, presumably, be called upon to rule on whether a 16 or 17 year old has Gillick competence to consent. It would also be reasonable to conclude that the court would have a best interests role above that of the parents’ consent in cases where a young person thought not to be competent was determinedly expressing disagreement with a parental decision (either to consent or to refuse) – and, in the case of a child refusing care or treatment, the MHA would in any case provide a more appropriate framework for compulsory detention.
What is less clear, however, is the exact relationship between decisions made under the MCA (i.e. through a best interests process), in which the parents would be merely best interests consultees, and decisions made by parents on behalf of a 16 or 17 year old young person lacking capacity – particularly where that young person may not be able to express (or even form) their own view.
The profound difficulty with this judgement is that, essentially, it is founded on the retreat of parental authority at the pace of the child’s development of capacity to consent on their own behalf i.e. the concept of Gillick capacity. Beyond the age of 16, this sits very uneasily indeed with the Mental Capacity Act. The MCA applies from age 16 upwards. So how is this apparent conflict to be resolved?
Munby LJ’s judgement does engage with the issue of the MCA to some extent. He points to the a lack of specific provision in relation to those aged 16 or 17 in the MCA (presumably a reference to the applicability of DOLS only to those 18+) and the fact that the MCA makes no statutory provision for the role of those exercising parental responsibility. So, if the MCA alone governed the issue for 16 and 17 year olds, parents would have no status beyond that of being (along with others) Best Interests consultees. From this, he draws the conclusion that the intent of the MCA was to leave the matter to the common law i.e. the Gillick principles. (para. 127)
In para. 125, Munby LJ unpicks what he sees as the wrong assumptions underpinning the original judgement (of Keehan J) and identifies these as:
- his approach does not give effect to the fundamental principle established by Gillick: namely that, in this context (see paragraphs 79-85 above), the exercise of parental responsibility comes to an end not on the attaining of some fixed age but on attaining 'Gillick capacity'.
- because none of the statutory provisions upon which he relied bears either expressly or by implication upon the matter in hand which, to emphasise the obvious, is to do with the ambit and extent of parental responsibility and nothing else.
He concludes that these are errors because they would imply that “one is no longer, in the case of the 16-year old, within the scope or zone of parental responsibility” (para. 134). With due respect to Munby LJ, I am not convinced that this is so. The acknowledgement of some degree of differentiation accorded to 16 and 17 year olds by the MCA (and a range of other legislation and international conventions) does not imply that parents have no “parental responsibility” for 16 and 17 years, rather those legislative provisions acknowledge the reality that parents have limited parental authority over 16 and 17 year olds by reason of their proximity to attaining full majority at 18.
It is to my mind not irrelevant to note that the facts of the original Gillick case concerned the capacity to consent of, specifically, children under the age of 16 to contraceptive or abortion advice or treatment. The age of 16 in that case being crucially relevant as the age of consent to sexual activity and, as such, assuming that typically developing 16 year olds will have developed capacity to consent to sexual activity and, further, developed the capacity to consent to medical treatment and advice around it. So, the original principle established by Gillick dealt with the speed and age at which a child’s own consent or refusal could override that of the parent at ages less than the age of 16. Throughout the Gillick judgement it was clear that from age 16 up, young adults were presumed have capacity to make their own decisions around sexual activity and medical treatment related to it.
Even more importantly, the principle underpinning Gillick and quoted in Munby LJ’s judgement was as follows:
"It is, in my view, contrary to the ordinary experience of mankind, at least in Western Europe in the present century, to say that a child or a young person remains in fact under the complete control of his parents until he attains the definite age of majority, now 18 in the United Kingdom, and that on attaining that age he suddenly acquires independence. In practice most wise parents relax their control gradually as the child develops and encourage him or her to become increasingly independent.” (Lord Fraser of Tullybelton at pages 171-172)
The whole point of Lord Fraser’s argument was that it was not wise for parents to exercise ‘complete control’ over older children in order to prevent a sudden transition to full independence at age 18 and that this control should be relaxed as the child developed. In my view, it is clearly relevant whether the child/young person is actually on such a trajectory or not (as a result of their disability). It is one thing for parents to exercise gradually diminishing control over a child to support their development and quite another to maintain complete control over a child at a point very close to adulthood precisely because they may never or only at an age beyond 18 develop the capacity to take their own decision at all by reason of a disability.
Munby LJ refutes arguments of discrimination essentially on the grounds that all children under 18 lack full majority and that parents retain some parental responsibility right up until the age of 18. This is, of course, true. However, what is not dealt with explicitly is the reality that a far higher proportion of disabled children will attain maturity and competence at a later age (or never) than is the case for non-disabled children. If that difference is dealt with simply by contending that parents must retain the power to take decisions for their children until they develop the maturity and skills to do so for themselves, then it is difficult to see how that can possibly not result in disabled children being treated as ‘younger’ than non-disabled peers of the same age – a form of paternalism now widely recognised as discriminatory.
It is to be hoped that the Supreme Court will have the opportunity to consider the matter further.
Full judgement: http://www.bailii.org/ew/cases/EWCA/Civ/2017/1695.html
A reminder that accountability can't be contracted out
A recent Local Government Ombudsman decision should give pause to cash strapped councils who are hoping that contracting out as many social care functions as possible to third parties will outsource their responsibilities. An elderly woman with dementia lost a third of her body weight whilst living in the Care Home she had been placed in by her local council. Administrative errors and a lack of co-ordinated oversight on the part of the council meant that they had failed to react and address the quality of care in the home, despite complaints from the woman's family and a CQC inspection report which had criticised poor record keeping at the home. The Ombudsman upheld the family's complaint against the council.
The case highlights that, despite the appalling financial situation facing most councils, the monitoring of council contracts with third parties to whom they outsource functions must go beyond a "race to the bottom" focus on fees, fees, fees. The LGO's decision recommends that future Contract Monitoring visits to the Care Home should look into:
- nutrition care plans, food and fluid charts and weight charts;
- falls monitoring, falls risk assessments and falls/mobility care plans; and
- care plans for activities and records of activities on offer.
That shouldn't be news to any council. Good practice in contract monitoring must include awareness of early indicators of institutional 'early warning' signs which should trigger safeguarding procedures. What is needed to achieve that effectively is good communication between Commissioning and front line Social Care. Those councils whose Commissioners still sit secure in an ivory tower with their calculators and bottom line focus, remote from the reality of the social care front line, must start to listen.
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