ZK (Landau-Kleffner Syndrome: Best Interests)



Judge: HHJ Burrows

Citation: [2021] EWCOP 12

Summary

In this case, the court considered the residence and contact arrangements for a 37 year old man, and the place within those decisions for his wishes and feelings.

ZK had, as a child, developed Landau-Kleffner Syndrome (also known as acquired aphasia with epilepsy).  ZK was not deaf but not unable to understand aural language.  Until September 2020, he lived with his mother.  In 2017, concerns had been expressed about whether he was to be married, leading to a Forced Marriage Protection Order application.  This led to proceedings before the Court of Protection, during which it became clear that, despite ZK’s profound communication difficulties, it was possible for him to make progress in language development.

By September 2020, ZK was consistently expressing a wish to leave the home he shared with his mother. He expressed the wish to leave quickly. He did not wish his mother or family to have notice of his move. The Local Authority conducted a best interests meeting on 11 September 2020, having assessed ZK as lacking the capacity to make the decision. The decision was to move him out. In his evidence, ZK’s nephew, HM, described the shock and sadness it caused to the family when, on the day of the ‘removal.’ ZK “just did not return from his community activities.”  HHJ Burrows indicated that he understood that,

  1. […] and I can also see how that has caused ill-feeling towards the local authority and SLP, and its personification, the Managing Director, (MD).

 

  1. However, I am not satisfied on the basis of the evidence I have read and heard that the removal was improper, either in the fact that it happened at all, or the in the way it happened. There is clear evidence that ZK wanted to move from his mother’s house and into a supported arrangement of some sort. He was assessed as being incapable of making that decision and a best interests decision was made. Consultation with, and notification to, the family would have been ideal as well as compliant with the provisions (and philosophy) of the MCA. However, there were good reasons why that could not and did not happen in this case.

The separation after removal was sanctioned by the court (it is not clear from the judgment why an application was not made in advance).

The case then returned to HHJ Burrows for him to consider whether it was in ZK’s best interests to remain away from his family home and, indeed, to move to a new placement, or for him to return to his family home and their care.   By that point, it was clear that there had been a big improvement in ZK’s communication skills, a view “shared by everyone who knows ZK and has known him for some time, except his family. In evidence given by HM, ZK’s nephew, he was unable to see the improvement in his uncle’s ability to communicate, his engagement with others or his happiness. I do not think HM was being wilfully blind or churlish in what he said. I am quite sure that he and the rest of ZK’s core family genuinely believe him to be unchanging, entirely incapable of anything but the most basic communication, and that he will remain the same in the future” (paragraph 13).

HHJ Burrows was at pains to emphasise that whilst there was before him sufficient evidence to displace the statutory presumption of capacity, capacity was in ZK’s case a subject requiring “serious consideration and scrutiny in view of [his] progress,” and the court would be returning to revisit the situation with the benefit of a jointly instructed expert.

HHJ Burrows was able to dispose of the question of deprivation of liberty easily, identifying that the arrangements for him at the placement crossed the line to confinement to which ZK could not consent (but also noting that “even if he were to reside at home with a package of care provided mostly or entirely by his family, he would also be deprived of his liberty there” (paragraph 22).

In terms of ZK’s best interests, the position was starkly set out.  On behalf of the local authority and the Official Solicitor (for ZK) it was argued that “ZK is doing extremely well where he is, doing what he is, and he wants to remain there. To deny him that wish and send him back to his family would be a serious blow to his confidence and self-esteem, as well as a serious restriction on him continuing to do what he wishes to do” (paragraph 26).

On behalf of the family, three points were made.

First, that the removal had been illegal.   HHJ Burrows did not accept that this was the case:

  1. An assessment was made of his capacity to make that decision and he was found to be lacking. The Local Authority, with statutory responsibility for ZK’s social care then had to decide what was in his best interests. ZK’s clearly expressed wishes and feelings were given considerable weight alongside the other factors outlined in the evidence. They then had to decide whether and if so, how they would put into effect what they decided was in his best interests- namely, to leave his mother’s home. In the circumstances as I see them, from the evidence, their actions were entirely in keeping with the MCA. There was an element of subterfuge because that was what was demanded by ZK himself. It was regrettable. It caused and continues to cause rancour. However, it was not unlawful.

Second, the removal was the cause of a lack of trust towards the family towards the statutory body.   HHJ Burrows identified that this was right, but that the law was clear:

  1. […] Where a decision has to be made about care arrangements for a person who is unable to make a choice for himself, that decision must be made in hisbest interests. It is plain to me that, objectively viewed, ZK benefits hugely from his engagement with SLP. It is also clear to me that he enjoys that engagement. It would be a significant blow to him if he were suddenly spending considerably less time with the carers and support workers than he presently does. This is not just about recreation or even learning a language. To ZK it is obvious that BSL is the way in which he has been able to engage with and participate in the world. His inquisitiveness, humour and the way he behaves underline the sheer excitement he derives from the world. That should come as no surprise since that was promptly removed from him by his disorder when he was a young child, the MD drew the analogy with a 3-year-old, learning about the world and endlessly asking “why? why? why?” to every new puzzle that experience brings. That seems to me to be an accurate and useful comparison.

Third, it was submitted that the question to be asked was “why not home?”:

  1. […] She referred me to FP v GM & A Health Board[2011] EWHC 2778 (COP) at paragraphs [20] and [25] in support. That case was about an elderly man with dementia who was in hospital. The issue before the Court was whether he should go home or to an EMI Nursing Home. Mr Justice Hedley considered how Article 8 of the European Convention was relevant to the interpretation of the role of the Court of Protection when making best interests decisions about residence. A person is entitled to family life unless the deprivation of family life can be justified under Article 8(2). In that case, the person at the centre wanted to go home. Hedley, J. thought the starting point in that case was “why should [P] not go home?” As I read the judgment, what Hedley, J was doing was to formulate the question he had to answer in that case, on its facts, in a simple and straightforward way. In this case, the situation is very different. ZK has been enabled to leave his family home, at his own request in order to have a more independent life, and he expresses clear wishes to remain where he is. To formulate the question as Ms Jackson suggests serves no practical purpose. To regard it as a legal presumption in this case would be entirely wrong. With regard to Article 8 of the convention, ZK has a right not an obligation to have a family life (emphasis added)

HHJ Burrows found, in looking at all the relevant factors as required by the best interests test, that he was “unable to shift the focus of my considerations of ZK’s best interests from the fact that his wishes and feelings seem so clear and consistent. Or, put another way- using Ms Jackson’s terminology “why not let him do what he wants?”  He continued:

  1. Mr Karim, Q.C. [for ZH] refers me to Article 8 of the European Convention as well as the UNCRPD and the need to maximise individual autonomy. He is right. The whole purpose of the MCA is to enable those whose capacity is absent, seriously inhibited, or just emerging to be a participant in making decisions for themselves as much as possible. In this case, ZK is learning how to communicate with the wider world. He seems to like what he sees. He now has the linguistic tools to comprehend things, to ask questions, to express his views, to reflect, to ruminate, to agree and disagree and to make light of things. He is learning how to be autonomous.

 

  1. It is my firm view that if ZK were to be ordered to return home to whatever package of care could be put together for him at his family home at the present time, it would not serve his best interests. There is suspicion and hostility towards the local authority and SLP. I am quite sure that the family does not really comprehend what has happened to ZK, and the extent of his actual and potential abilities. Within a home environment, overseen by family members, the care plan involving SLP (or any equivalent body) would soon turn to conflict.

HHJ Burrows was at pains to emphasise that this was not to rule out a future move home.  Indeed, it might well be that with the development of ZH’s communication skills, along with his sense of autonomy, there could come a time when he would be able to make that decision for himself.   That was, however, some way down the line.

As regards contact, HHJ Burrows identified that the family’s access to ZH should be regulated by what ZH wanted, with regular reviews of the contact plan in light of his wishes and feelings.

A procedural point arose as to expert evidence.  HM, a litigant in person, raised the issue of whether he should be required to fund part of the jointly directed expert report, as he asserted he had too little income and capital.  HHJ Burrows accepted his evidence, and directed that the cost should not be split so as to include a contribution from him.  More fundamentally, however, HHJ Burrows identified that he could not see why he needed to be a party, because he was “simply another person putting forward the same arguments as his grandmother. I am minded to discharge him as a party, but direct that he be provided with documents in the case, that he be invited to attend future hearings, and to contribute his views on his uncle’s best interests by email in advance of the hearing as he has done until now” (paragraph 37).

Comment

This judgment is of very considerable interest for a number of reasons.   The first is that the court was led so squarely by ZH’s wishes and feelings which were being asserted, it seems, despite strong familial pressure to the contrary.   The second is the neat formulation of a point sometimes forgotten, namely that Article 8 ECHR gives a right to (respect for) family life – it does not impose an obligation upon the person to have a family life with those who they may not wish to.  The third is the extent to which the court identified that ZH was on a trajectory towards greater autonomy, and considered it its duty to seek to support that trajectory.

The fourth point is HHJ Burrows’ rejection of the argument that ZH had been unlawfully removed from his home.  Not least in light of some observations of Sir James Munby faced with one too many situations where the person had been removed against their will without any application to court, there has been a distinct degree of fuzziness as to whether (and when) such applications are required.  This fuzziness is discussed here; this case reinforces the point reached in the paper that an application is not required (even if it may well be very advisable if there will otherwise be an impact upon ongoing relationships) if the primary reason for removal is to give effect to the person’s wishes and feelings.

The last point which bears highlighting is HHJ Burrows’ unfeigned disgust for the fact that at least some of those who had in the past worked with ZK had taken the attitude that a General Practitioner had in March 2017, namely that he wished to confirm that ZK is “mentally retarded, deaf, dumb, unable to speak and unable to express his feelings due to Landau Kleffner Syndrome” (paragraph 4).   HHJ Burrows was at pains to record his (remote) judicial visit, the detail of which merit reproduction to show just how wrong this was.  Whilst ZK might be unable to understand aural language, HHJ Burrows was clear that:

  1. […] is certainly not unable to express his feelings. With the benefits of learning a non-aural language, ZK has developed a curiosity and inquisitiveness which is matched by his appetite to communicate with others including, on that occasion, me. He seemed to me to derive great pleasure from communicating and to enjoy the company of those who were with him.

 

  1. ZK’s communication was, on the face of it, hard work for him. It consists of a combination of methods: he signed (using British Sign Language- BSL); he used a pen on paper to write messages- he is literate. He occasionally referred to the screen of his mobile phone, where he would display a relevant image. All of this was relayed to me by his intermediary and a signer. When I met him I wondered how frustrating it must be to have to go through all that just to communicate. On reflection, however, I realise that for someone who for many years, before he was introduced to sign-language, was unable to communicate very effectively at all, this process is intensely liberating.

 

  1. Having discussed a number of subjects with ZK for around 30 minutes I was, and remain, entirely unconvinced that the term “mentally retarded”, ignoring its offensiveness, applies to him.

CategoryBest interests - Contact, Best interests - Residence, Best interests Date

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