Safeguarding and Ethical Practice for People with Intellectual Disability

This chapter will outline the legal and practical principles that inform safeguarding and ethical practice for people with intellectual disability (ID) in the UK. The legal foundations for practice are discussed, drawing first on their foundations in international human rights law, the impact this has had on domestic law and the development of legislation to protect the rights of those with ID. Next, the current policy and principles that underpin ongoing practice are discussed, beginning with the particular history of people with ID and how understanding of ID has since evolved. Case examples are provided throughout to demonstrate these concepts in practice.

Models of Service Development and Delivery for People with Intellectual Disability

It is important to ensure that people with intellectual disability (ID) have access to high quality healthcare services. There is a wide variation in the availability of services and service delivery models globally for people with ID. Reasons for these variations are examined including availability of workforce resources and the development and availability of specialist resources. Tracing the development of services across the world, the chapter goes on to review the ongoing debate on access to generalized healthcare services versus the role of specialist services. We review advantages and disadvantages of different service delivery models. While these models have evolved in response to the political, cultural, and economic environment, it is important that any development of service delivery model signs up to basic underlying principles of person-centred, right-based, and outcome-focused approach. This should be undertaken in partnership with service users and carers in the spirit of co-production and with the underlying principles of choice, inclusion, rights, and independence. Any service development should also ensure that it would meet the complex health needs of people with ID as described in the tiered model of services with an efficient use of available resources. It should be sustainable through development of skills, competencies, and capabilities of the workforce and agencies that work with people with ID. There are number of examples across countries of innovative service provisions by public, private, and voluntary sectors as described in the chapter and it is important that we learn from those models. Advocating should be an integral aspect of any service delivery; we should be constantly advocating globally for high quality healthcare based on the best available evidence for people with ID.

Visual and Hearing Impairments and their Impact on the Mental Health of Adults with Intellectual Disability

Visual and hearing impairments, congenital or acquired, are much more common in people with intellectual disability (ID) than the general population. These can be missed or diagnosed with delay if professionals rely just on the subjective reports by the families/care givers rather than objective screening and assessment. People with ID might be unable to complain about a visual or hearing impairment due to their communication difficulties. Therefore, diagnostic overshadowing might occur whereby these conditions might present with atypical signs and symptoms (e.g. loss of skills, isolation, and challenging behaviours) which could be attributed to dementia, depression, or other mental health problems. There has also been an overrepresentation of autistic-like features and autism spectrum disorder reported in people with visual and hearing impairment. Raising awareness of these comorbidities in people with ID will therefore facilitate early diagnosis and implementation of appropriate management strategies that can improve service provision for this vulnerable population.

Behavioural Phenotypes

This chapter describes the concept of behavioural phenotypes with examples of genetically-determined neurodevelopmental syndromes which are associated with particular developmental trajectories and specific comorbid risks for challenging behaviour or mental ill-health. Potential neural and other mechanisms that might explain the observed genotype/phenotype associations are explored as are treatment modalities including a focus on novel syndrome specific treatments. The chapter is primarily aimed at trainees, clinicians, and clinical researchers and, for this reason, is about those aspects of the behavioural phenotypes that impinge negatively on a person’s health, well-being, and quality of life.

Schizophrenia and Related Psychoses in People with Intellectual Disability

Individuals with an Intellectual Disability (ID) have an increased prevalence of Schizophrenia Spectrum Disorders (SSDs). The complex interplay between the symptoms of SSD and the individual’s level of development often give rise to atypical presentations. This is more so in individuals with a significant ID. Current classification systems may not adequately cover all the conditions experienced by individuals and may not be entirely captured under SSDs. It is important that the clinician gathers appropriate information from all relevant sources, including family, carers, educational establishments, and day care providers. Evidence for interventions in ID is sparse and treatment guidelines are based on evidence from the general population, which need to be extrapolated with caution, bearing in mind individual characteristics. The management of SSDs in ID requires a holistic approach, which takes into account their level of ID, sensitivity to medication, side effects and drug interactions and consideration towards other therapeutic modalities such as individual supports or CBT. The social aspects of management play a vital part in the treatment programme and the involvement of family and carers is crucial.

Types of Mental Disorders in People with Intellectual Disability

Mental disorders are common in people with intellectual disability, with a reported point prevalence of 36% in children and young people (including challenging behaviours), and 40.9% in adults (or 28.3% excluding challenging behaviours). People with intellectual disability experience all types of mental disorders, some more commonly than the general population, e.g. autism, attention-deficit hyperactivity disorder, schizophrenia, bipolar affective disorder, and dementia. Challenging behaviours are also common, and have no clear general population equivalent. Multi-morbidity of mental and physical disorders is typical. Mental disorder assessments are complex due to multi-morbidity and polypharmacy, in addition to impairments in communication, understanding, vision, and hearing, and the need to work with family and paid carers as well as the person with intellectual disability. Mental disorder classificatory systems have been developed for people with intellectual disability, in view of under-reporting when using general population manuals: DC-LD was designed to complement ICD-10, and DM-ID 2 to interpret DSM-5.

Family Experiences of Psychiatric Services for their Relative with Intellectual and Developmental Disabilities

Accessing treatment for a relative with intellectual and/or developmental disabilities requiring assessment or treatment from services can be extremely difficult for families and carers. Adverse past experiences can significantly affect the development of trust and relationships with present services and professionals. Listening and acknowledging families’ past and present concerns, alongside providing transparent information and reassurance about their relatives’ care, provides a foundation for starting positive relationships. Families are valuable in helping clinicians understand their patients fully and this helps the recovery process. Services have a duty to work collaboratively with patients’ families, in order to improve treatment outcomes including quality of life. Occasionally, there may be concerns in relation to the patient being the victim of familial financial, emotional, physical, and/or sexual abuse. In such instances, safeguarding processes must be followed.

Pharmacotherapy for Mental Illness and Behaviours that Challenge in People with Intellectual Disabilities

Psychotropic medications are widely prescribed for people with an intellectual disability (ID) both for the management of mental illnesses and behaviours that challenge. It is generally agreed that people with ID are as likely or more likely as the general population to develop mental illnesses and therefore this has to be treated actively. However the appropriateness and extent of prescribing medication to manage behavior that challenges is a matter of debate and legitimate concern. This chapter summarizes the evidence in this field and sets out a practice framework to minimize the risk of inappropriate prescribing practice.

Bipolar Affective Disorder in Intellectual Disability

People with Intellectual Disability (ID) experience Bipolar Affective Disorder (BPAD) at a rate probably similar to that of the general population, though diagnosis may be delayed or missed owing to numerous factors, including communication deficits and atypical clinical presentations, especially in those with more severe ID. BPAD is caused by an interaction of genetic and environmental factors, and associated with numerous other forms of psychiatric and physical illness. Diagnostic criteria used for the general population may have clinical utility for those with milder ID, though ID-specific classification systems may be more useful in those with moderate-severe ID. There has been limited research regarding treatment of BPAD in individuals with ID. However, NICE guidelines have recommended treatment in line with that of the general adult population. Treatment decisions should be a collaborative process wherever possible, involving the patient, carer, clinician, and other health professionals. Factors specific to the individual patient should be taken into account in any subsequent therapeutic approach, including the acceptability of blood test monitoring and comorbid illness, among other factors.

Attention Deficit Hyperactivity Disorder (ADHD) in People with Intellectual Disability

People with intellectual disability (ID) are more susceptible to mental disorders including mental illness and developmental disorders, such as autism and attention-deficit hyperactivity disorder (ADHD). The identification of comorbidities is an important task for the clinician as, in addition to clarifying the diagnosis, it carries implications for the treatment and prognosis. This chapter aims to explore the association between ID and ADHD and review the key research findings. The validity of the diagnosis of ADHD in ID is considered. The assessment issues relating to the diagnosis of ADHD in this population are discussed. The questions around treatment and management are summarized and, finally, the clinical implications are highlighted.