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Background Adults with intellectual disability experience increased rates of mental health disorders and adverse mental health outcomes. Aim Explore childhood risk factors associated with adverse mental health outcomes during adulthood as defined by high cost of care, use of psychotropic medication without a severe mental illness and psychiatric hospital admissions. Method Data on 137 adults with intellectual disability were collected through an intellectual disability community service in an inner London borough. Childhood modifiable and non-modifiable risk factors were extracted from records to map onto variables identified as potential risk factors. Logistic and linear regression models were employed to analyse their associations with adverse outcomes. Results We showed that the co-occurrence of intellectual disability with autism spectrum disorder and/or attention-deficit hyperactivity disorder (ADHD) were associated with psychotropic medication use and high-cost care packages. However, when challenging behaviour during childhood was added, ADHD and autism spectrum disorder were no longer significant and challenging behaviour better explained medication prescribing and higher cost care. In addition, the severity of intellectual disability was associated with higher cost care packages. Ethnicity (Black and mixed) also predicted higher cost of care. Conclusions Challenging behaviour during childhood emerged as a critical variable affecting outcomes in young adulthood and mediated the association between adult adverse mental health outcomes and co-occurring neurodevelopmental conditions, that is, ADHD and autism. These findings emphasise the need for effective early intervention strategies to address challenging behaviour during childhood. Such interventions for challenging behaviour will need to take into consideration autism and ADHD.

Background After the rapid implementation of digital health services during the COVID-19 pandemic, a paucity of research exists about the suitability of remote consulting in people with intellectual disabilities and their carers, particularly for neuropsychiatric reviews. Aim This study examines when remote neuropsychiatric routine consulting is suitable for this population. Method A survey was conducted of people with intellectual disabilities and their carers, examining their preference between face-to-face and video consultations for ongoing neuropsychiatric reviews within a rural countywide intellectual disability service in Cornwall, England (population: 538 000). The survey was sent to all adults with intellectual disabilities open to the service on 30 July 2022, closing on 30 September 2022. Participants were asked to provide responses on 11 items predesigned and co-produced between clinicians and experts by experience. The entire service caseload of people had White ethnicity, reflecting the ethnic demographics of Cornwall. Responses received without consent were excluded from the study dataset. Results Of 271 eligible participants, 119 responses were received, 104 of whom consented to having their anonymised data used for research analysis. There were no significant differences between preferences and age and gender variables. There was no statistically significant difference regarding preference for the reintroduction of face-to-face appointments (52.0%) compared with video consultations (48.0%). Travel distance (>10 miles) to the clinical setting was important but did not outweigh benefits for those preferring a face-to-face appointment. Conclusions This study offers insights into the factors that influence preferences about what type of neuropsychiatric appointment is most suitable for people with intellectual disabilities.

Formal Language: In this essay, I reflect on the systematic exclusion of people with intellectual disabilities from philosophy even as their personhood is subject to ongoing philosophical debates. Theorizing this disenfranchisement as a form of epistemic oppression, I consider it in the context of the invalidation of disabled perspectives more broadly and characteristics of knowledge-production that confer credibility in philosophy. I end with a call for transformation through the framework of disability justice. I include an Easy Read summary, a plain language companion, and discussion questions, which restate my argument in simplified language and invite dialogue, demonstrating how philosophy might resist epistemic gatekeeping and imagine knowledge-production otherwise. Plain Language: This essay is about philosophy and intellectual disability (ID). People with ID do not get to do philosophy very much. Some reasons they are left out are: – Disabled people are not believed when they talk about their lives. – The way we write in philosophy makes it hard for people with ID to join. I think we should change how we do philosophy. I wrote a summary that is easy to read. I wrote questions to talk about together. I want to think about how to do philosophy better. Easy Read Summary: Philosophers are thinkers. They think about how the world is and how it should be. They think about intellectual disability (ID). Some thinkers say people with intellectual disabilities (ID) are worth less than other people. Most people with intellectual disabilities (ID) do not get to say what they think. We can change how we think by including people with intellectual disabilities (ID). We can believe what people with intellectual disabilities (ID) say about their lives. We can write and speak in simple ways. We can give people help thinking and making decisions. We can include people who do not speak or write. We can think as a community. [ABSTRACT FROM AUTHOR]

SUMMARY: On average, 49–63% of people with intellectual disabilities and/or autism spectrum disorder (ASD) are prescribed psychotropic medications to treat psychopathology, including psychiatric illness, behaviours that challenge and the core symptoms and associated behaviours of these developmental disorders. In many cases, psychotropics, particularly antipsychotics, are used off-label without a proper indication, particularly to manage behaviours that challenge. The RCTs show moderate evidence supporting the efficacy of low-dose risperidone and some preliminary evidence for aripiprazole in treating behaviours that challenge among children with ASD and/or intellectual disabilities. The RCT-based evidence for the other psychotropics is equivocal, so no definitive conclusions can be made on their efficacy. Polypharmacy and the use of high doses of antipsychotics are prevalent in this population, leading to the risk of adverse events and drug–drug interactions. Despite various national and international guidelines, and government initiatives encouraging reduced psychotropic use, there is little evidence of this happening; on the contrary, the use of antidepressants, mood stabilisers and benzodiazepines may be increasing. A concerted multi-agency effort is urgently needed to address this significant public health concern of the overmedication of people with intellectual disabilities and/or ASD. [ABSTRACT FROM AUTHOR]

SUMMARY: Almost a quarter of people with intellectual disabilities have epilepsy. This life-long condition adversely affects their health, safety and well-being and carries an increased risk of sudden unexpected death in epilepsy (SUDEP) in this population. This commentary considers what not only health and social services but also communities and people with intellectual disabilities themselves can do to improve outcomes. [ABSTRACT FROM AUTHOR]

Background An increasing number of children, adolescents and adults with intellectual disabilities and/or autism are being admitted to general psychiatric wards and cared for by general psychiatrists. Aims The aim of this systematic review was to consider the likely effectiveness of in-patient treatment for this population, and compare and contrast differing models of in-patient care. Method A systematic search was completed to identify papers where authors had reported data about the effectiveness of in-patient admissions with reference to one of three domains: treatment effect (e.g. length of stay, clinical outcome, readmission), patient safety (e.g. restrictive practices) and patient experience (e.g. patient or family satisfaction). Where possible, outcomes associated with admission were considered further within the context of differing models of in-patient care (e.g. specialist in-patient services versus general mental health in-patient services). Results A total of 106 studies were included and there was evidence that improvements in mental health, social functioning, behaviour and forensic risk were associated with in-patient admission. There were two main models of in-patient psychiatric care described within the literature: admission to a specialist intellectual disability or general mental health in-patient service. Patients admitted to specialist intellectual disability in-patient services had greater complexity, but there were additional benefits, including fewer out-of-area discharges and lower seclusion rates. Conclusions There was evidence that admission to in-patient services was associated with improvements in mental health for this population. There was some evidence indicating better outcomes for those admitted to specialist services.

Introduction The research field of disability and mental health is politically and socially relevant, because the psychological well-being of people with intellectual disabilities has often been trivialized in therapy and legislation. Since the pursuit of mental health is coming into focus due to removal of stigma and emerging awareness, people with disabilities must have equal opportunities to choose their place of residence and get suitable psychosocial support. Objectives Our aim is to investigate the influence of assisted outpatient treatment (AOT) on the quality of life and resilience of people with intellectual disabilities who are living self-determined. Methods A participatory mixed-methods design is chosen as it enables the greatest possible standardization and allows a high flexibility. The project will be divided into three parts: A systematic literature search to gain knowledge about the field and to estimate the sample size, a pre-post-comparison of the WHOQOL-BREF to evaluate AOT in terms of self-perceived quality of life and a focus-group of handicapped people to reflect the study results with attention on resilience. Results To foster the doctoral thesis, several questions can be discussed: 1) How is the relation of disability and mental health to be described? 2) What might be the pros and cons of self-determined living? 3) Which steps need to be taken to implement AOT more often? Conclusions The topic is relevant in the public health sector and the results could help to sensitize professionals and the general society regarding to participation in everyday life. The recommendations developed may serve to implement comparable forms of housing. Disclosure No significant relationships.

Aims and method Adverse effects are a common concern when prescribing and reviewing medication, particularly in vulnerable adults such as older people and those with intellectual disability. This paper describes the development of an app giving information on side-effects, called Medichec, and provides a description of the processes involved in its development and how drugs were rated for each side-effect. Medications with central anticholinergic action, dizziness, drowsiness, hyponatraemia, QTc prolongation, bleeding and constipation were identified using the British National Formulary (BNF) and frequency of occurrence of these effects was determined using the BNF, product information and electronic searches, including PubMed. Results Medications were rated using a traffic light system according to how commonly the adverse effect was known to occur or the severity of the effect. Clinical implications Medichec can facilitate access to side-effects information for multiple medications, aid clinical decision-making, optimise treatment and improve patient safety in vulnerable adults. [ABSTRACT FROM AUTHOR]

Effective communication skills are essential for all healthcare professionals. Specialist teaching on communicating with people with intellectual disabilities is often lacking, resulting in poorer healthcare and worse outcomes than in the general population. Working with professionally trained actors with intellectual disabilities, we developed an interprofessional workshop that sought to provide authentic communication skills training to enable healthcare students from various disciplines to communicate effectively with patients of all abilities. In a survey, students reported that they found the workshops rewarding and confidence-building, and that they learnt more about the roles of their interprofessional colleagues. [ABSTRACT FROM AUTHOR]

This paper is an introduction to adaptations to make cognitive behaviour therapy (CBT) more accessible to people with intellectual disabilities. It is intended to inform therapists who may work with people with intellectual disabilities in mainstream services. The paper describes adaptations that consider neuropsychological processes, such as memory, and executive functions, such as planning, problem solving and self-regulation, and identifies that these factors are not unique to people with intellectual disabilities. We describe adaptations based on a review of literature describing CBT for people with intellectual disabilities (Surley and Dagnan, 2019) and draw on clinical experience to give examples of adaptations where possible. The paper particularly emphasises the generalisability of adaptations used with people with intellectual disabilities to therapy with wider populations and suggests that CBT therapists working in mainstream services will have the skills to be able to adapt therapy for people with intellectual disabilities. Key learning aims: (1) To overview the evidence base supporting the use of CBT with people with intellectual disabilities. (2) To describe the epidemiology of intellectual disability and discuss its implications for the generalisability of adaptations discussed in this paper. (3) To describe a range of adaptations to make CBT more accessible people with intellectual disabilities. (4) To consider whether such adaptations are part of the skill set of CBT therapists mainly working with people without intellectual disabilities. [ABSTRACT FROM AUTHOR]

In the context of theological interpretations of disabilities, I am arguing for the concept of "strength in weakness." So far, a "theology of weakness," which portrays people with disabilities as pointedly illustrating universal human weakness, has played a very prominent role in the field. I argue that this theological interpretation of disabilities should not be the dominant one. I trace the alternative model of "strength in weakness" in discussing writings by the apostle Paul and describe how it is supported by the anthropological concept of intercorporeality. Yet first, the article discusses Stanley Hauerwas's theology of disability, which is not only a very pointed theology of weakness but also repeatedly associates disabilities with suffering. Since at least the latter aspect is in contrast with widespread self-perceptions among people with disabilities, a theology of weakness amounts to a "narrative prosthesis" (David Mitchell and Sharon Snyder). By contrast, Paul suggests that weakness can allow for distinct strengths. To flesh out distinctive competences of people with intellectual disabilities, I then discuss Maurice Merleau-Ponty's concept of intercorporeality. Intercorporeality denotes a human competence more generally, but I suggest that it is often partly eclipsed by social norms. However, people with intellectual disabilities often pay less attention to social norms, which helps explain a distinctive intercorporeal competence among people with intellectual disabilities. Reduced attention to social norms can imply a distinctive strength. [ABSTRACT FROM AUTHOR]

Background There are no previous whole-country studies on mental health and relationships with general health in intellectual disability populations; study results vary. Aims To determine the prevalence of mental health conditions and relationships with general health in a total population with and without intellectual disabilities. Method Ninety-four per cent completed Scotland's Census 2011. Data on intellectual disabilities, mental health and general health were extracted, and the association between them was investigated. Results A total of 26 349/5 295 403 (0.5%) had intellectual disabilities. In total, 12.8% children, 23.4% adults and 27.2% older adults had mental health conditions compared with 0.3, 5.3 and 4.5% of the general population. Intellectual disabilities predicted mental health conditions; odds ratio (OR)=7.1 (95% CI 6.8–7.3). General health was substantially poorer and associated with mental health conditions; fair health OR=1.8 (95% CI 1.7–1.9), bad/very bad health OR=4.2 (95% CI 3.9–4.6). Conclusions These large-scale, whole-country study findings are important, given the previously stated lack of confidence in comparative prevalence results, and the need to plan services accordingly.

Background There is limited empirical information on service-level outcome domains and indicators for the large number of people with intellectual disabilities being treated in forensic psychiatric hospitals. Aims This study identified and developed the domains that should be used to measure treatment outcomes for this population. Method A systematic review of the literature highlighted 60 studies which met eligibility criteria; they were synthesised using content analysis. The findings were refined within a consultation and consensus exercises with carers, patients and experts. Results The final framework encompassed three a priori superordinate domains: (a) effectiveness, (b) patient safety and (c) patient and carer experience. Within each of these, further sub-domains emerged from our systematic review and consultation exercises. These included severity of clinical symptoms, offending behaviours, reactive and restrictive interventions, quality of life and patient satisfaction. Conclusions To index recovery, services need to measure treatment outcomes using this framework.

This is a systematic review of systematic reviews of secondary health conditions, health promotion interventions, and employment in people with intellectual disabilities. Articles were included if they reported a systematic review of health and employment, secondary health conditions, and health promotion interventions for people with intellectual disabilities. The methodological quality of the included reviews was reviewed using the A MeaSurement Tool to Assess systematic Reviews quality rating system, a measurement tool to assess systematic reviews. Twenty-five systematic reviews were included. There was evidence that people with intellectual disabilities (ID) were at elevated risk for secondary health conditions, health promotion interventions can improve physical and mental health conditions, and employment is associated with better health-related quality of life. Health promotion intervention to help people with ID engage in health promoting behaviors can improve health and their ability to find and maintain employment. [ABSTRACT FROM AUTHOR]

SUMMARY: Despite numerous UK government policies aimed at reducing the number of autistic people and people with an intellectual disability in mental health hospitals, little progress has been made, with many experiencing lengthy stays that offer little therapeutic benefit. Once admitted, people are at risk of restrictive interventions and significantly delayed discharge, resulting in trauma. This article draws on the cases of four people to illustrate the limitations of current mental health system approaches to the challenges experienced by autistic people and people with an intellectual disability. The importance of relational working and listening to people is explored, and we demonstrate how this can facilitate the provision of bespoke housing and care packages to enable a successful return to life in the community. Finally, we offer recommendations on the changes urgently needed to ensure that autistic people and people with an intellectual disability can live ordinary lives in their own homes, with timely and effective support from mental health services when needed, just like everyone else. [ABSTRACT FROM AUTHOR]

SUMMARY: Up to a fifth of people with intellectual disabilities display challenging behaviour that has a significant impact on their health and quality of life. Psychotropic medication does not appear to confer any clinical benefits beyond risk reduction in acute situations. However, very few non-pharmacological treatments have clear evidence of clinical and cost-effectiveness and there is therefore often a dearth of advice as to which components or interventions would be helpful. To our knowledge no single model has been developed to provide a clear path from understanding the behaviour to the implementation of a therapeutic approach for such a complex clinical problem. In this article we describe a stepped-care model that needs to be further operationalised in the assessment and management of behaviours that challenge in adults with intellectual disabilities. [ABSTRACT FROM AUTHOR]

Sleep is vital for our physical and mental health. Studies have shown that there is a high prevalence of sleep disorders and sleep difficulties amongst adults with intellectual disabilities. Despite this, sleep is often overlooked or its disorders are considered to be difficult to treat in adults with intellectual disabilities. There is a significant amount of research and guidance on management of sleep disorders in the general population. However, the evidence base for sleep disorders in adults with intellectual disabilities is limited. In this review paper, we look at the current evidence base for sleep disorders in adults with an intellectual disability, discuss collaborative working between intellectual disabilities psychiatrists and sleep medicine specialists to manage sleep disorders, and provide recommendations for future directions. [ABSTRACT FROM AUTHOR]

Summary: Antiseizure medications (ASMs) are the second most widely prescribed psychotropic for people with intellectual disabilities in England. Multiple psychotropic prescribing is prevalent in almost half of people with intellectual disabilities on ASMs. This analysis identifies limited evidence of ASM benefit in challenging behaviour management and suggests improvements needed to inform clinical practice. [ABSTRACT FROM AUTHOR]

Introduction: Intellectual disability (ID) is a neurodevelopmental disorder of etiologically diverse conditions starting in childhood characterised by impairments in intellectual and adaptive functioning. Although life expectancy is still lower compared with the general population, the number of people with ID growing old is increasing. Consequently, age-related mental health (MH) disorders, such as dementia, are becoming a common comorbidity of ID. Objectives: Description of the challenges related to the provision of appropriate healthcare for elderly persons with ID and MH disorders. Method: Review of the recent literature based upon a comprehensive search of medical databases using the keywords: intellectual disability, mental health, dementia, Alzheimer's disease, Down's syndrome and age. Results: ID is associated with a higher prevalence of physical and MH disorders across all ages, while clinical diagnostics and management of dementia are made complicated by the comorbidity rate. Elderly people with ID, especially those with Down's syndrome (DS), more commonly develop dementia than their age-matched counterparts without ID. For peoplewithDS and Alzheimer's disease (AD) the survival time was related to the age at diagnosis of AD, severity of ID, anti-dementia medication, history of epilepsy and living status. Conclusion: Elderly people with ID have greater early-onset multimorbidity and a prevalence of dementia which is up to five times higher compared to the elderly non-ID population. Their care is more challenging, and their diagnostics requires a comprehensive approach, including ID-appropriate neuropsychological evaluation. Specialist services for elderly persons with ID and MH disorders are, however, sparsely available and should be established. [ABSTRACT FROM AUTHOR]

SUMMARY: Attention-deficit hyperactivity disorder (ADHD) is a common neurodevelopmental disorder with a higher prevalence rate in people with intellectual disability compared with their peers without such disability. The classic presentation is that of inattention and/or hyperactivity and impulsivity, but these symptoms can manifest differently in people with intellectual disability. Despite a higher prevalence, the rate of diagnosis and treatment of ADHD in intellectual disability remains low. This article discusses the clinical presentation of ADHD in people with intellectual disability and the relationship between ADHD and other comorbid conditions, such as autism and bipolar disorder. Pharmacological and non-pharmacological interventions are discussed from a practical and a clinical point of view. [ABSTRACT FROM AUTHOR]

SUMMARY: Genomic medicine is an evolving medical specialty that uses genomic information about an individual as part of their clinical care (e.g. for diagnostic or therapeutic decision-making). It has rapidly grown since the completion of the Human Genome Project in 2003. In England, the National Health Service's Genomic Medicine Service is considered to be the first national healthcare system to offer whole-genome sequencing as part of routine clinical care. Already, genomic medicine is making an impact in the fields of oncology, pharmacology, rare and undiagnosed diseases, infectious disease and neurology. In this article, we present a useful tool kit for clinicians working with individuals with intellectual disability, autism spectrum disorder and epilepsy. This article provides evidence for the importance of genetic testing, conveys an understanding of the range of genetic tests available and their diagnostic yields and how these apply to intellectual disability, autism spectrum disorder and epilepsy. Our simple tool kit gives information on when to refer to a clinical geneticist and where to find resources for clinicians and parents on genetic testing. [ABSTRACT FROM AUTHOR]

SUMMARY: Pica is a condition associated with a number of physical and mental health diagnoses. The potentially fatal consequences of pica and the links with significant physical health problems are not always recognised. Pica is like other forms of behaviour that can challenge: clinicians must seek the underlying cause and treat this first, before primarily pursuing a behavioural form of treatment. In this article, we discuss the associations, consequences, assessment and management options available for pica to guide professionals. Pica often presents in a way individual to the particular patient, so tailoring of assessment and treatment is important. [ABSTRACT FROM AUTHOR]