Alex RKThe case of TW v Middlesbrough Council [2023] EWCOP 30 raises an important issue about diagnosis in the context of Learning Disability (the term being capitalised for reasons which will become clear) especially in the presence of profound deafness.
For many years, professionals concerned with a man Katie Gollop KC called ‘Tony’ had supported him on the basis that he had a mild learning disability. However, in the context of an application determining questions of residence, internet and social media,[1] that diagnosis was called into question by expert evidence provided by Dr O’Rourke, a consultant clinical psychologist, in May 2022 after she undertook psychometric testing and identified that Tony’s IQ was in the low average range, meaning that he did not meet one of the three mandatory diagnostic criteria. Conversely, she was equally clear that Tony’s ability to understand information relevant to the matters in issue, and to comprehend the consequences of his decisions, meant that in relation to the relevant matters, he functioned as if he has a Learning Disability.
As Katie Gollop KC identified at paragraph 3, by the time that the application came before the court in June 2023, the parties had had the benefit of MacDonald J’s decision in North Bristol NHS Trust v R [2023] EWCOP 5 for some months, explaining why a formal diagnosis of a mental health condition or brain injury is not a necessary prerequisite to a finding that a person lacks capacity to make a decision about a matter for purposes of the MCA 2005. However, at paragraph 4, Katie Gollop KC explained that:
that the lack of a formal diagnosis of Learning Disability was actively causing Tony problems in his everyday life. Tony has a long history of using the internet to access images of child sexual abuse. (I am grateful to the Official Solicitor for alerting me to the fact that it is not appropriate to refer to “child pornography”, and that this is the preferred and appropriate term.) The latest discovery of such behaviour was in November 2019 when police were involved and removed three internet enabled devices. Tony’s care was transferred to the Council’s Forensic Disability Service and its Forensic Social Care Team in around February 2021.
It had been intended that Tony move to ‘Placement 2,’ a five bedded residential care home exclusively for male adults at risk of coming into contact with the criminal justice system as a result of their offending behaviour. Tony had visited Placement 2 on a number of occasions and expressed a desire to move there. However, Placement 2’s registration with the Care Quality Commission required that its service was accessible only by male residents with Learning Disability. In light of Dr O’Rourke’s conclusion, Placement 2’s position was that it would not accept Tony unless he had a formal diagnosis. Further, Tony’s continued access to the Forensic Disability Service was in jeopardy because there was doubt about whether it could properly be said that he has a mental health disability at all.
At the end of the hearing, Dr O’Rourke was asked whether she would endorse a formulation that in the context of having an IQ on the fourteenth centile, Tony has a longstanding impairment of the mind or brain, acquired before his eighteenth birthday as a result of prolonged deprivation of communication, education and life experience, which was best termed “a functional learning disability” (it is not entirely clear whether it was one of the parties, the judge or Dr O’Rourke who came up with this term). She said that she would. This, on its face, appeared to satisfy Placement 2, although it is not entirely clear whether it would also satisfy the Forensic Disability Service. The parties all therefore agreed that Tony lacked capacity in the relevant domains, but Katie Gollop KC agreed to give a written judgment because the evidence revealed “some unhelpful differences of approach to the diagnosis of Learning Disability amongst healthcare professionals, and the case concerns the effect of deprivation on mental development in the context of profound deafness.”
This meant giving a pen picture of Tony. He was born with cerebral palsy which affected the movements of his head, trunk and hands in particular. He was also born profoundly deaf. In 2017 he fractured his spine and he had been a wheelchair user since then. He deployed a variety of methods of communication including British Sign Language, some Makaton, and other signs of his own devising which he supplemented with occasional written notes. He had some useful speech sounds and lip patterns. He therefore had some communication with hearing people generally, but opportunities for exchange of information and development of understanding were better with someone who had some BSL qualifications, and optimal with a person who was BSL fluent. He had been placed into care of the local authority by his parents when a small baby; and between birth and the age of 20, went to nurseries and schools as far apart as Leeds, Sussex, Kent and Clwyd, Wales. Though he was taught a form of signing, all of these establishments were for hearing children because priority was given to meeting his physical rather than his communication needs. Tony therefore grew up with no exposure at all to his deaf peers. When he went aged 20 to live in a facility for deaf people, he was described as lacking an identity.
Issues around Tony accessing images of child sex abuse started in 2014, and included, in 2021, assessing by a group of professionals from the Adult Learning Disability team, including an interpreter and a social worker who knew him well and who was able to sign, completed an assessment of his capacity to use the internet. The group agreed that he was unable to understand and weigh up the consequences of looking at such images and took the view that functionally he had a learning disability. The police were involved and a COP9 application form recorded in the judgment stated that Tony was served with a Sexual Risks Order[2] and that there were court hearings.
Dr O’Rourke, an expert in the field of mental health and deafness, assessed Tony’s capacity in accordance with the 2015 Guidance on the Assessment and Diagnosis of Intellectual Disabilities in Adulthood published by the British Psychological Society (“the BPS Guidance”). As Katie Gollop KC identified at paragraph 17.
Of note is the fact that the BPS Guidance deprecates the use of screening tools, and reliance on just one part of the assessment process. Further, it recommends that “a judgement as to whether or not an individual has an intellectual disability should only be made when all three components of the assessment are carried out by an appropriately qualified professional, who is able to justify their opinion in accordance with this guidance. This would reduce confusion for individuals, families and services.” The appropriately qualified professional will be a psychologist.
The three criteria necessary to an assessment of learning disability are:
a) a significant impairment of intellectual functioning; and
b) a significant impairment of adaptive behaviour (social functioning); with
c) both impairments arising before adulthood.
Dr O’Rourke’s conclusions on capacity in her initial report were that:
a) Tony’s nonverbal skills were within the normal range;
b) however his acquisition of knowledge and skills was poor as a result of deafness leading to lack of access to information and learning;
c) that lack of access is not unusual among deaf people but it had been exacerbated in Tony’s case as a result of him being in schools for hearing children in his formative years and thus without access to effective communication with his peers;
d) consequently, he had poor understanding of matters that would be understood by most individuals with his nonverbal skills
e) that inconsistency was explained by educational and experiential deprivation, not organic impairment;
f) the fact that his intellectual potential was within the normal range raised the question of whether the diagnostic test of the MCA was met.
In July 2022, Dr O’Rourke provided answers to questions put by the parties. By this time, she had had access to additional records and the 2014 WAIS scores. She explained that on proper analysis of the 2014 test results, and when she administered the updated tests in 2022, he scored in the low average range for IQ, on the fourteenth centile, and therefore did not meet the criteria in the BPS Guidance for a diagnosis of Learning Disability. She elaborated on this: “The fact that he can learn computer skills, adapt his signing to meet my needs, understand humour and answer questions involving ‘why?’, all support the notion that he does not have a learning disability. However, there are clear deficits in understanding of more abstract and complex matters and impairments in adaptive functioning, most notably a lack of insight into his own needs and matters concerning risk.” She went on to say that “this discrepancy and his very obvious difficulties in adaptive functioning are a result of lack of access to formal and incidental learning, lack of opportunity and impoverished linguistic environments which did not afford him the opportunity to develop.”
As Katie Gollop KC noted, two other clinicians considered that Tony could be diagnosed with a Learning Disability, the first being a GP assessing him as part of the DOLS process (but who then backed down advising that it was not within her expertise to make a diagnosis of Learning Disability), and the second being a psychiatrist, who diagnosed a mild Learning Disability, although with an explanation of how he reached that conclusion. This led Katie Gollop KC to comment that:
26. The reported diagnoses of the GP and psychiatrist, in the face of Dr O’Rourke’s assessment of IQ, are important because they illustrate the confusion identified by the BPS Guidance, and the pertinence of the recommendations it makes with regard to the need for assessment of Learning Disability to be made by a trained psychologist in accordance with the Guidance. When Dr O’ Rourke was asked how she thought it was that a GP and a psychiatrist disagreed with her expert opinion, she said that in her experience most (though not all) psychiatrists are not trained to administer the WAIS tests, and may not be fully cognisant with them or fully appreciate their significance.
27. It may be that some healthcare professionals assume an IQ below 70 where the adaptive behaviour criterion is clearly met. Alternatively, there may be a linguistic issue. The term “learning disability” may be being used as a descriptor of functional incapacitous decision making, without an intention to connote a formal diagnosis. Whatever the explanation, the present case demonstrates there will be occasions when P’s welfare is compromised if there is confusion about whether all three criteria are met, and a lack of robust evidence supporting any diagnosis. Further, if the practice of referring to a person provided with adult social care as having “mild learning disability” where that person’s IQ is properly assessed as being over 70 is widespread, that practice may undermine the validity of the diagnosis. It may mean that the potential of people who have the capability to gain capacity is not being maximised, or that their strengths and weaknesses are not being analysed in the way envisaged by the BPS Guidance (see paragraph 5.7) with deleterious effect. It may perhaps be helpful if healthcare professionals recording that a person has a learning disability (with or without capital letters) go on to state whether that assessment is “within BPS Guidance” or “outside BPS Guidance”.
On the basis of the evidence before her, Katie Gollop KC expressed herself satisfied that Tony lacked capacity in the relevant domains, and in relation to each decision:
30. […] the inability exists by reason of an impairment in the functioning of his mind or brain. The impairment, which operates as a functional learning disability, is the result of stunted mental development, occurring before the age of 18 years, as a result of prolonged deprivation of communication, education, social learning and life experience, in combination with institutionalisation. That impairment renders Tony unable to understand why accessing images of child sexual abuse is wrong, the potential consequences for him if the police are involved, and the harm caused to children directly and to wider society indirectly by his actions when he is allowed unrestricted, unsupervised internet access.
Amongst the orders that Katie Gollop KC made in consequence were:
33. […] interim orders which permit support workers to supervise Tony’s access to the internet and social media, and prevent him from accessing images of child sexual abuse, or any other material they consider may be illegal or which may make those viewing or possessing the images liable to criminal prosecution. I declined to accede to the Official Solicitor’s application to bring what were described as “crime adjacent” images of children within the ambit of that interim order. I was told that in the past, when Tony has access to a device with software that prevents him from accessing images of child sexual abuse, he may seek out pictures or video of, for example, children in swimming costumes in a paddling pool. It appeared to me that viewing or possession of such images may not be unlawful, that such a measure could be unduly restrictive, and in any event may be difficult to justify in circumstances where Tony is currently choosing not to use a screen at all whilst supervised. This is a matter that is properly ventilated and determined at the final best interests hearing, where a proposed Care Plan is likely to be available.
Comment
Amongst the many troubling issues that the case shines a light on is the ‘gatekeeping’ function of diagnosis as access to services. Debates about whether or not diagnoses are ‘valid’ or ‘stigmatic’ are vigorous and very heated. But for so long as services are diagnosis-based, as this case illustrates, not having a formal diagnosis can be as problematic as having one. And, indeed, it is not entirely clear whether such matters as access to the Forensic Disability Service were going to be solved in Tony’s case by the judge’s ingenious creation (or endorsement) of a concept of ‘functional learning disability.’
The case also highlights the vital, and potentially disabling, role of environment. Had Tony been brought up in an environment which responded to his communication needs, it is likely that the picture before the court regarding his capacity would have been very different – indeed, it may well have been the case that his circumstances would have been sufficiently different that court involvement simply would not have been needed.
[1] The proceedings initially started as a s.21A challenge by Tony to the restrictions in place upon him at his current placement, but were clearly then reconstituted more broadly.
[2] Parenthetically, it would have been interesting to understand whether there had been consideration of whether Tony could understand the conditions placed on him by the Sexual Risk Order, because they should only be granted where this is the case.
