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An introduction and overview of intellectual disability. The American Psychiatric Association (APA) diagnostic criteria for intellectual disability (DSM-5 criteria) are covered: Deficits in general mental abilities; Impairment in adaptive functioning for individual’s age and sociocultural background which may include communication, social skills, person independence, and school or work functioning; All symptoms must have an onset during the developmental period; The condition may be subcategorised according to severity based on adaptive functioning as mild, moderate, or severe. The chapter also covers the role and evidence base for medication and key issues when prescribing for people with intellectual disability.
People with intellectual disability are more likely to experience mental health difficulties, and their treatment responses may differ from those in the general population. This book, written by leading clinical practitioners from around the world, provides comprehensive guidance on prescribing for people with intellectual disability, as well as general information on their clinical care. The guidelines have been conceived and developed by clinicians working in intellectual disability services. Combining the latest evidence and expert opinion, they provide a consensus approach to prescribing as part of a holistic package of care, and include numerous case examples and scenarios. Now in its fourth edition, this update reflects the changes in prescribing practice; it places emphasis on clinical scenarios and case examples and includes input from service users and their families. This is a practical guide for busy clinicians, and a valuable reference for all primary and secondary healthcare professionals.
In every country, and in every language, a significant proportion of children struggle to master the skill of reading. In 2014, The Dyslexia Debate examined the problematic interpretation of the term 'dyslexia' as well as questioning its efficacy as a diagnosis. Ten years on, The Dyslexia Debate Revisited reflects on the changes in dyslexia assessment and treatment over the last decade, including the introduction of dyslexia legislation in many US states. Addressing the critical responses to their original challenge of the dyslexia construct, Julian G. Elliott and Elena L. Grigorenko also consider why, despite scientific critiques, existing dyslexia conceptions and assessment practices continue to be highly attractive to many professionals, individuals, and families. Based on current scientific knowledge, the authors strive to promote a shared understanding of reading difficulties and emphasize the importance of providing timely and appropriate intervention and support to anyone who faces difficulties with learning to read.
Edited by
Roland Dix, Gloucestershire Health and Care NHS Foundation Trust, Gloucester,Stephen Dye, Norfolk and Suffolk Foundation Trust, Ipswich,Stephen M. Pereira, Keats House, London
The phrase ‘complex needs patient’ is often used by clinicians to describe a patient who presents with challenges and needs that require management approaches that are resource intensive and multi-focused. These individuals are often passed from service to service, with high costs to services across the board. In this chapter, we seek to define ‘complex needs patients’, recognising that for many clinicians the phrase refers to those individuals who present with severe mental illnesses together with other comorbid challenges including, but not limited to, serious physical illness, substance misuse or addiction, social problems including a lack of support, homelessness as well as problematic, absent or abusive relationships and the presence of another comorbid mental illness. This chapter explores the possible aetiological factors of complexity as well as its background and characteristics and discusses useful treatment modalities. Lastly, it considers the impact that the Covid-19 pandemic has had both in terms of disease presentation and the impact it has had on services.
Relationships and marriages between couples with intellectual disability are to be celebrated, as is the longer life expectancy now enjoyed by many with intellectual disability. However, dementia disproportionately affects people with intellectual disability, especially people with Down's syndrome. Research into experiences of couples without intellectual disability who are affected by dementia suggests that a relational perspective provides health and social care professionals with information to support the wellbeing of both partners. This dyadic perspective is missing for couples with an intellectual disability where one partner has dementia. There is currently no evidence base informing how each partner may best be supported. This scoping review, with three separate searches, aims to address this gap. The first search sought to establish if any studies had explored the experiences of couples with intellectual disability where one partner has dementia. After determining that no studies have been published to date, the review explores what is known about relationships in the context of dementia (N = 8) and in the context of intellectual disability (N = 10), in second and third searches. Different ways to approach care and support in relationships among partners, staff and other family members were identified and it was evident that support could act as a facilitator as well as a barrier to people and their relationships. While the lives of couples affected by dementia appeared to remain largely private, couples with intellectual disability had a high involvement of staff and family members in their life. Potential implications for future research with couples with intellectual disability affected by dementia are discussed, highlighting the importance of exploring how couples navigate emotional complexities and changes in their relationship, while understanding that the context in which the lives of people with intellectual disability take place and relationships happen is different.
This article evaluates the impact of volunteering with a music education project for children and adults with learning disabilities on the professional development and career trajectory of music students at a Conservatoire in the United Kingdom. A mixed-methods online questionnaire captured the impact of volunteering with Melody Music Birmingham. Findings suggest that volunteering was a powerful aspect of the respondents’ learning, potentially influencing their career choices, perceptions and attitudes. Further training and experiences for Conservatoire students in engaging with, supporting, and delivering music-making for people with learning disabilities are recommended.
In this chapter I outline the features of common neurodevelopmental disorders (NDD), the link between NDD and special educational needs and disability, and types of school attendance problems that occur for young people with NDD. I discuss common contributing factors to problems with school attendance for young people with NDD at the individual and school levels. Suggestions for promoting attendance and understanding attendance problems for young people with NDD are discussed throughout. Young people with NDD are at higher risk than their peers of having many of the risk factors for poor school attendance: low academic achievement, sensory difficulties, physical health problems, poor social or academic skills, co-occurring conditions, difficulty verbally communicating anxiety or frustration, being bullied, having difficulties with relationships, and low self-esteem. School absences in these young people may be due to a multitude of reasons, embedded in complex social conditions including family and school factors. Adaptations to the school environment and individually focussed cognitive and behavioural approaches adapted to the needs of young people with NDD are most likely to help in addressing problems with school attendance. Effective management, support and treatment of symptoms due to NDD is likely to improve the school attendance of these young people.
Primary care interventions for people with common mental health problems in England are primarily delivered through Improving Access to Psychological Therapies (IAPT) services. One of the priorities for IAPT services is to reduce inequalities in access and outcomes for potentially disadvantaged populations. This paper uses national data from the years 2012–2013 to 2019–2020 to present a comparison of service process and therapy outcomes for people with learning disabilities. Annual data for people with learning disabilities, people with other recorded disabilities and people with no recorded disabilities were extracted from a publicly available, national data source. Data are presented graphically with relative risk calculated for each variable and year, and show a broadly similar pattern of waiting time access for people with learning disabilities and people with no disabilities, and a broadly similar proportion of people with learning disabilities and people with no disabilities who finish treatment. However, people with learning disabilities have poorer clinical outcomes than people with no disabilities. We discuss adaptations to IAPT processes and therapy provision that may further support people with learning disabilities’ access to IAPT services.
Key learning aims
(1) To describe how IAPT services record disabilities, and in particular record whether a person identifies themselves as having a learning disability.1
(2) To explore the differences in processes and therapy outcomes for people with learning disabilities compared with people with no disabilities and people with other disabilities.
(3) To understand adaptations to IAPT processes and therapies that may make IAPT services more accessible to people with learning disabilities.
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.
Ireland has an ageing population of persons with intellectual disability (ID), autism spectrum disorder (ASD) and both (ID/ASD). Despite this, little is known about the prevalence of ASD and its effect on functional outcomes, psychiatric comorbidity or diagnostic issues in an older population with ID. This article reviews the literature on older adults with ID/ASD and identifies opportunities for future research in this population.
Method:
The authors searched the Medline, Pubmed, Embase, CINAHL and PsychInfo databases using the search terms using key words: (older adults) AND (ID OR mental retardation OR learning disability) AND (autism OR ASD). After excluding articles for relevance, a scoping review was carried out on the results retrieved.
Results:
Of the 1227 articles retrieved from the literature on ID and autism/ASD in older adults, 85 articles were relevant to an adult population with ID/ASD. The data were collated and are presented covering domains of diagnosis, prevalence, psychiatric comorbidities and functional outcomes.
Conclusions:
Despite increased prevalence in childhood ASD in the last 20 years, there is a lack of research regarding adults, especially older adults, with ASD, up to half of whom will have some level of ID. The existing literature suggests that older adults with ID/ASD may have reduced functional independence, increased psychiatric comorbidity and psychotropic prescribing and more behavioural presentations than the older population generally or those with ID only. There is a need for longitudinal data to be collected on this ageing population so that care and management needs can be met in the future.
To explore the lived experience of delivering or receiving news about an unborn or newborn child having a condition associated with a learning disability in order to inform the development of a training intervention for healthcare professionals. We refer to this news as different news.
Background:
How healthcare professionals deliver different news to parents affects the way they adjust to the situation, the wellbeing of their child and their ongoing engagement with services. This is the first study that examined the lived experience of delivering and receiving different news, in order to inform the development of training for healthcare professionals using the Theoretical Domains Framework version 2.
Method:
We conducted qualitative interviews with a purposive sample of 9 different parents with the lived experience of receiving different news and 12 healthcare professionals who delivered different news. It was through these descriptions of the lived experience that barriers and facilitators to effectively delivering different news were identified to inform the training programme. Data analysis was guided by Theoretical Domains Framework version 2 to identify these barriers and facilitators as well as the content of a training intervention.
Findings:
Receiving different news had a significant impact on parents’ emotional and mental wellbeing. They remembered how professionals described their child, the quality of care and emotional support they received. The process had a significant impact on the parent–child relationship and the relationship between the family and healthcare professionals.
Delivering different news was challenging for some healthcare professionals due to lack of training. Future training informed by parents’ experiences should equip professionals to demonstrate empathy, compassion, provide a balanced description of conditions and make referrals for further care and support. This can minimise the negative psychological impact of the news, maximise psychological wellbeing of families and reduce the burden on primary care services.
The majority of people with intellectual disabilities (ID) and psychiatric disorders access mainstream mental health services across Europe. However, only 56% of countries provide postgraduate psychiatric training in ID according to a survey across 42 European countries. We explore the challenges of ID training and make recommendations for education and health policymakers.
Drawing on a 2010 analysis of the reform and costs of adult social care commissioned by Downing Street and the UK Department of Health, this paper sets out projected future costs under different reform scenarios, reviews what happened in practice from 2010-19, explores the impact of the growing gap between need and funding, and explores the relationship between future spending and economic growth. In the process, it identifies a ‘lost decade’ in which policy makers failed to act on the warnings which they received in 2010, draws attention to the disproportionate impact of cuts on older people (compared to services for people of working age) and calls for urgent action before the current system becomes unsustainable.
Twelve intellectual disability psychiatry trainee representatives and 13 training programme directors were surveyed to assess the current state of training, to establish what motivated specialty trainees to choose intellectual disability psychiatry, and to explore issues that might affect retention.
Results
The combined survey response rate was 83%. All trainees had chosen intellectual disability psychiatry after experience in either their personal or working life. Overall, specialty trainees were satisfied with their training; the majority felt supported to meet training requirements. Trainee isolation was the main concern for current trainees.
Clinical implications
Recruitment for specialty training in intellectual disability psychiatry is acknowledged to be a concern for workforce planning and could affect access to and quality of psychiatric care for people with intellectual disability. The results of this survey could be used as a guide to improve efforts to attract trainees. Acknowledging and reducing trainee isolation could improve trainee morale.
Over 2.4 million children in the public school system are diagnosed with a learning disability, including dyslexia and developmental dyscalculia. Previous research has shown that some teachers are unaware of the importance of working memory in a student’s academic and social realm and what working memory deficits may look like in the classroom. The relationship between learning disabilities, working memory, and behaviour problems were examined with tailored recommendations for improvement to provide insight for classroom educators. Three children from the United Kingdom, all of whom were 8 years old and presented with symptoms of learning disorders and low working memory profiles, were selected for case studies. Measures of working memory, behaviour, and academic attainment were included. Results from their standardised assessments indicated that each child had below average working memory, as well as low scores in arithmetic, writing and spelling skills. Each child also exhibited some type of behavioural problem, such as inattention or hyperactivity. Implications of the impact of their working memory profile on their academic outcomes and behaviour are discussed. Recommendations, such as Response to Intervention (RTI), are included for classroom educators to bridge the gap between research and practice.
Individuals with additional needs, such as learning disabilities, face a crisis of unemployment in the United Kingdom (UK). Many of these individuals encounter few adult services that are in place to address their support needs. Supported work internship programs are one attempt to address this crisis. One such program for young people with learning disabilities is the Project SEARCH model. Though a number of research studies have explored the efficacy of the Project SEARCH model, the reported markers of success (e.g., subsequent employment rates) have not taken into account first-hand participant experiences. The current study aimed to establish whether participant views were consistent with the previously reported, positive, quantitative measures. We explored the views of seven interns, aged 17 to 24 years, with various learning difficulties, and three job coaches who were involved in the program from September 2017 to June 2018. Semistructured interviews were conducted and analysed using thematic analysis. Participants revealed meaningful experiences for those involved, positive self-development, and renewed aspirations for the future. The value of a strong and consistent support network involving family members, job coaches, coworkers, and supervisors was highlighted. The study also found ongoing challenges associated with the scheme. These centred on concerns that interns’ abilities were being underestimated, the impact of a reduction/withdrawal of support at the conclusion of the program, and the barriers to finding subsequent competitive employment for interns. The research highlights the value of eliciting participant voice within research, and discusses how the findings can be used to further develop supported work internship programs.
In recent years, concerns have been raised that too many patients stay for too long in forensic psychiatric services and that this is a particular problem in those with an intellectual disability.
Aims
To compare the characteristics, needs, and care pathways of long-stay patients with and without intellectual disability within forensic psychiatric hospital settings in England.
Method
File reviews and questionnaires were completed for all long-stay patients in high secure and a representative sample of those in medium secure settings in England. Between-group analyses comparing patients with and without intellectual disability are reported.
Results
Of the 401 long-stay patients, the intellectual disability and non-intellectual disability groups were strikingly similar on many sociodemographic, clinical and forensic variables. The intellectual disability group had significantly lower lengths of stay, fewer criminal sections, restriction orders and prison transfers, and higher levels of behavioural incidents and risk assessment scores.
Conclusions
In spite of similar offence histories and higher risk levels, those with intellectual disability appear to be diverted away from the criminal justice system and have shorter lengths of stay. This has implications about the applicability of the Transforming Care programme to this group.
Two case reports of people with severe intellectual disability (ID), Autism and challenging behaviour are discussed here to describe the presentation of attention-deficit hyperactivity disorder (ADHD) in people with ID. Both cases highlight how the diagnosis of ADHD can be missed and the behaviours attributed to ID and autism, which could lead to using ineffective treatment strategies. The case reports illustrate the importance of the diagnosis and treatment of ADHD in people with ID and how it can make a difference to their clinical presentation and quality of life.
Current policy and practice directed towards people with learning disabilities originates in the deinstitutionalisation processes, civil rights concerns and integrationist philosophies of the 1970s and 1980s. However, historians know little about the specific contexts within which these were mobilised. Although it is rarely acknowledged in the secondary literature, MIND was prominent in campaigning for rights-based services for learning disabled people during this time. This article sets MIND’s campaign within the wider historical context of the organisation’s origins as a main institution of the inter-war mental hygiene movement. The article begins by outlining the mental hygiene movement’s original conceptualisation of ‘mental deficiency’ as the antithesis of the self-sustaining and responsible individuals that it considered the basis of citizenship and mental health. It then traces how this equation became unravelled, in part by the altered conditions under the post-war Welfare State, in part by the mental hygiene movement’s own theorising. The final section describes the reconceptualisation of citizenship that eventually emerged with the collapse of the mental hygiene movement and the emergence of MIND. It shows that representations of MIND’s rights-based campaigning (which have, in any case, focused on mental illness) as individualist, and fundamentally opposed to medicine and psychiatry, are inaccurate. In fact, MIND sought a comprehensive community-based service, integrated with the general health and welfare services and oriented around a reconstruction of learning disabled people’s citizenship rights.
Offenders with an intellectual disability pose a major challenge to Intellectual Disability Service providers in the Republic of Ireland. This is especially so as no national Forensic Intellectual Disability Service currently exists.
The Forensic Intellectual Disability Working Group of the Irish College of Psychiatrists was established in order to take steps to address this issue by establishing the level of need for a Forensic Intellectual Disability Service in Ireland and developing a college position paper.
No previous study has been carried out to measure offending behaviour amongst persons with an intellectual disability attending mental health services in Ireland.
Methods
A postal survey was undertaken targeting the lead clinicians of all Intellectual Disability Psychiatry, General Adult Psychiatry and Forensic Psychiatry Services in the Republic of Ireland. This survey requested anonymous data regarding service users with an intellectual disability and offending behaviour in this population.
Results
Data relating to 431 service users was returned. Those reported to engage in offending behaviour were predominantly young males. Assault was the most common offence type. A significant number of serious offences such as unlawful killing, sexual assault and arson were reported.
Conclusions
There is an urgent need for the development of a Forensic Intellectual Disability Service in the Republic of Ireland. The current efforts of the National Forensic Mental Health Service to establish such a service by the creation of a post of Consultant Forensic Psychiatrist (special interest in intellectual disability) are to be welcomed.