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Background: Given the much greater COVID-19 mortality risk experienced by people with intellectual disabilities (ID), understanding the willingness of people with ID to take a COVID-19 vaccine is a major public health issue., Method: In December 2020 to February 2021, across the United Kingdom, 621 adults with ID were interviewed remotely and 348 family carers or support workers of adults with ID with greater needs completed an online survey, including a question on willingness to take a COVID-19 vaccine if offered., Results: Eighty-seven per cent of interviewees with ID were willing to take a COVID-19 vaccine, with willingness associated with white ethnicity, having already had a flu vaccine, gaining information about COVID-19 from television but not from social media, and knowing COVID-19 social restrictions rules. A percentage of 81.7% of surveyed carers of adults with ID with greater needs reported that the person would be willing to take a COVID-19 vaccine, with willingness associated with white ethnicity, having a health condition of concern in the context of COVID-19, having had a flu vaccine, being close to someone who had died due to COVID-19, and having shielded at some point during the pandemic., Conclusions: Reported willingness to take the COVID-19 vaccine is high among adults with ID in the United Kingdom, with factors associated with willingness having clear implications for public health policy and practice., (© 2021 The Authors. Journal of Intellectual Disability Research published by MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disibilities and John Wiley & Sons Ltd.)

Background: Little is known about the health and well-being of the 'hidden majority' of parents with mild intellectual disability (ID), who are less likely to be in contact with disability services., Method: We sought to add to knowledge in this area by examining the health and living conditions of parents with and without intellectual impairment in a large contemporary nationally representative sample of UK parents aged between 16 and 49 years old (n = 14 371)., Results: Our results indicated that, as expected, parents with intellectual impairment were at significantly greater risk than other parents of having poorer self-reported general, mental and physical health. They were also at significantly greater risk of experiencing higher rates of household socio-economic disadvantage and environmental adversities and lower rates of neighbourhood social capital and intergenerational support. Adjusting risk estimates to take account of between group differences in household socio-economic disadvantage eliminated statistically significant differences in health status between parents with and without intellectual impairment on all but one indicator (obesity). Further adjusting risk estimates to take account of between group differences in neighbourhood adversity, neighbourhood social capital and intergenerational support had minimal impact on the results., Conclusions: That controlling for between-group differences in exposure to socio-economic disadvantage largely eliminated evidence of poorer health among parents with intellectual impairment is consistent with the view that a significant proportion of the poorer health of people with IDs may be attributable to their poorer living conditions rather than biological factors associated with ID per se., (© 2015 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.)

Background: In the UK those paid to support adults with intellectual disabilities must manage two potentially conflicting duties that are set out in policy documents as being vital to their role: protecting service users (their duty of care) and recognising service users' autonomy. This study focuses specifically on the support of people with the genetically determined condition, Prader-Willi syndrome (PWS). Due to the behaviours associated with PWS, the support of this group of people vividly illustrates the tension between respect for autonomy and duty of care. This article explores how support workers working in a residential group home managed their competing duties of managing risk and promoting independence in practice., Methods: An ethnographic study, comprising of qualitative observations, semi-structured interviews and documentary analysis, was undertaken to investigate the work of support workers in a UK residential group home specialising in the support of adults diagnosed with PWS. The study focused on how support workers attempted to reconcile the tension between protecting service users from the risks associated with the syndrome and acknowledging service users' autonomy by enabling independence., Results: Findings demonstrate that risk was central to the structure of care delivery at the group home and support workers often adhered to standardised risk management procedures. The organisation also required support workers to promote service users' independence and many thought acknowledging service users' autonomy through the promotion of their independence was important. To manage tensions between their differing duties, some support workers deviated from standardised risk management procedures to allow service users a degree of independence., Conclusions: There is a tension between the duty of care and the duty to recognise autonomy at the level of service delivery in residential homes. Support workers attempt to manage this tension; however, further work needs to be done by both residential services and policy makers to facilitate the reconciliation of the duty of care with the duty to recognise service users' autonomy in practice., (© 2011 The Authors. Journal of Intellectual Disability Research © 2011 Blackwell Publishing Ltd.)

Background: There is a need for research to promote an understanding among service developers on why people with intellectual disabilities (ID) are referred to offender services in order for them to receive appropriate assessment and treatment. Previous studies investigating referrals into forensic ID services have concentrated on referral sources and administrative variables such as legal status., Aims: To construct a predictive model for choice of service referral based on a comprehensive range of information about the clientele., Method: We conducted a case record study of 336 people referred to community services and 141 to secure provision. We gathered information on referral source, demographics, diagnosis, index behaviour, prior problem behaviours and history of abuse., Results: Comparisons revealed 19 candidate variables which were then entered into multivariate logistic regression. The resulting model retained six variables: community living at time of referral, physical aggression, being charged, referral from tertiary health care, diverse problem behaviour and IQ < 50, which correctly predicted the referral pathway for 85.7% of cases., Conclusions: An index act of physical aggression and a history of diversity of problem behaviours as predictors against the likelihood of community service referral suggest that professionals have similar concerns about people with ID as they do about their more average offending peers; however, the more severe levels of ID mitigated in favour of community referral, regardless. Offenders with ID tend to be referred within levels of service rather than between them, for example, form tertiary services into generic community services.

Background: Supporting men and boys with an intellectual disability (ID) to meet their penile hygiene needs is perhaps one of the least acknowledged but most confronting issues facing care staff. The delivery of intimate hygiene can be a challenging topic particularly as it has been drawn into the emerging sexuality discourse and the ongoing abuse narrative. Compounding this challenge is the lack of guidance in intimate care for support staff. In addition, whereas the male with an ID outnumber the female, female care staff greatly outnumber male staff. Whether this situation affects outcomes for men and boys with an ID is unknown but it is an issue which should be examined., Method: This paper reports data from two separate studies, one quantitative the other qualitative, which sought to explore penile hygiene as a male health issue., Results: Results show the practice of care staff to be inconsistent, the views and values of care staff to be divergent. Some patterns and contextual differences were identified depending upon the gender of care staff. An emerging dialogue described some of the positive contributions that male staff make to men and boys with an ID., Conclusions: The penile health needs of men and boys with an ID are being compromised by a lack of guidance, training, knowledge and limited gender-sensitive care.

Background: The publication of the DSM-III (American Psychiatric Association (APA), 1980) prompted a significant increase in interest and research on personality disorder (PD), and the concept has subsequently been incorporated into mental health legislation in the developed world. Despite this, such research on people with intellectual disability (ID) has been sporadic, with widely varying results. The present study addresses a number of criticisms directed at previous research., Method: DSM-IV (APA, 2000) diagnoses of PD were made on 164 participants with ID on the basis of four independent sources of classification., Results: Reliability data for each PD was acceptable and alpha was .74 or above, with the exception of schizotypal PD (.63). Exploratory and confirmatory factor analyses were conducted, with the former revealing a 4-factor solution accounting for 58.9% of the variance, and a 2-factor solution accounting for 37.2% of the variance emerging for the latter. The factors were orthogonal, and we called the first factor "avoidant/rumination/inhibited" and the second factor "acting out"., Discussion: We review these findings in relation to previous research on PD and alternative frameworks for the understanding of personality. We hypothesise consistencies between these findings and previous work on personality and ID. A number of drawbacks to the research are discussed, including a caution on the pejorative nature of a diagnosis of PD in an already devalued population.

Disabled people are amongst the most excluded in society, while people with learning disability have the lowest rates of employment. Supported employment promises to address the gaps, but it is a new approach, one whose development has been incremental. The present authors explore some of the features of agencies providing employment support to disabled people, together with their managers' views. This paper describes semistructured telephone interviews with the managers of 31 employment support agencies. The survey sought to understand the types of service provided, the staff and caseload numbers, the training offered, and the targets used. The authors also asked the managers what would help them in delivering employment opportunities to disabled people. The responses of the managers highlight gaps between current policy and practice. Particular attention is given to the use of targets, fragmented funding and what managers consider is required to improve employment opportunities for disabled people. Managers endorsed the vision expressed in current policy, and identified numerous obstacles to its implementation in employment support. Taken together, their views can be used to guide the development of supported employment.

Statement of the Problem: The prevalence of epilepsy in people with an intellectual disability (ID) is apparently higher than in the general population. The outlook for individuals with both epilepsy and ID depends on the presence of any associated conditions. However, there have been few epidemiological studies of the prevalence of epilepsy and associated problems within a representative adult ID population to inform the development of policy., Method: This was a population-based prevalence study using the Leicestershire Learning Disability Register. Prevalence was estimated from the number of individuals with reported epilepsy identified from structured home interviews with carers. Associations with epilepsy were investigated for a range of defined physical, mental and skill attributes. Logistic regression was done with and without adjustment for age, sex and level of understanding to identify specific and holistic links respectively., Results: The prevalence of epilepsy was 26%. Among those with epilepsy, 68% experienced seizures despite anti-epileptic medication. Epilepsy showed a significant association with low levels of understanding. Specific morbid associations included wetting (adjusted odds ratio 2.7), soiling (2.2), walking (2.5), daily living skills (1.6), poor speech (2.2), lack of empathy (1.5), mood swings (1.5), being uncooperative (1.6), seeking attention (1.7) and disturbing others at night (1.9). Holistic associations included a wider range of physical and mental problems and global skills deficits., Conclusions: The high prevalence, associated morbidities and global skills deficits make epilepsy care for adults with ID important and complex. Specialist epilepsy services for this population need a multidisciplinary skills mix.

Background: Previous reports have suggested that South Asian and white UK populations have different prevalences of intellectual disability (ID), related psychological morbidity and service use. The aim of the present study was to compare these rates among South Asian and white adults in Leicestershire, UK., Method: This cross-sectional study is comprised of two parts. The analysis of prevalence is based on data from all South Asian and white adults known to the Leicestershire Learning Disabilities Register in 1991, with population denominators being drawn from the 1991 census. The other analyses use data collected from the most recent semi-structured home interviews, carried out between 1987 and 1998, with 206 South Asian and 2334 white adults., Results: The prevalence of ID in adults in Leicestershire is 3.20 per 1000 in South Asians and 3.62 per 1000 in whites. Among adults with ID, South Asians have similar prevalences of disabilities to whites and significantly lower skill levels. South Asians show similar levels of psychological morbidity, but make significantly lower use than whites of psychiatric services, residential care and respite care. South Asians use community services as extensively as whites, but feel that they have a substantially greater unmet need, especially with regard to social services., Conclusion: South Asian and white populations have similar prevalences of ID and related psychological morbidity. Culturally appropriate services for South Asian adults may need to focus on skill development and community care.

Despite the difficulty of defining behaviour disorder, most previous studies have reported a high rate of behaviour disorders in people with intellectual disability (ID). The aim of the present study was to establish the overall rate and types of behaviour disorders in a population-based sample of adults with ID. The other aim was to explore the possible risk factors that are associated with the overall rate as well as different types of behaviour disorders. One hundred and one adults with ID aged between 16 and 64 years were randomly selected from a sample of 246 such adults, i.e. those who were known to the Vale of Glamorgan Social Services Department in South Wales, UK. Thirteen behaviour disorders were rated according to the Disability Assessment Schedule. Background data on subjects were also collected, and were subsequently analysed to assess the relationship between different risk factors and behaviour disorders. Sixty-one subjects (60.4%) had at least one behaviour disorder of any severity or frequency. Twenty-three per cent of subjects showed aggression, 24% self-injurious behaviour, 36% temper tantrum, 26% overactivity, 29% screaming, 38% attention-seeking behaviour, 20% objectionable habits, 18% night-time disturbance and 12% of subjects showed destructiveness. Statistically significant associations were seen between the rate of overall behaviour disorder and the use of psychotropic medication, and between family and group home residence. The rate of aggression was significantly associated with the use of psychotropic medication. The rate of self-injurious behaviour was significantly associated with the severity of ID, female gender and poor communication abilities. The rate of temper tantrum was significantly associated with the use of psychotropic medication. Twenty-four subjects showed severe or frequent aggression, destructiveness, self-injury or temper tantrum, and 11 individuals showed real challenging behaviours. Severe behaviour problems were significantly associated with female gender, severity of ID, the presence of a history of epilepsy and attendance at day activities.

The reported prevalence of psychiatric illness among adults with intellectual disability (ID) varies widely between 10 and 39%; however, many methodological problems exist. The aims of the present study were to establish the prevalence of functional psychiatric illness among adults with ID who live in the community, in order to compare the overall rate and types of psychiatric illness between the population with ID and the general population without ID, and to establish the risk factors associated with psychiatric illness in adults with ID. The study was done in two stages. In the first part, a trained psychiatrist interviewed 101 randomly selected adults with ID and their carers using the Mini Psychiatric Assessment Schedule for adults with Developmental Disability (Mini PAS-ADD) to screen for psychiatric caseness. Out of these 101 adults, 90 had sufficient communicative abilities that made the administration of Mini PAS-ADD possible. A second trained psychiatrist interviewed 19 out of the 20 adults who were diagnosed as psychiatric cases according to the initial Mini PAS-ADD interview. This psychiatrist interviewed patients and their carers in line with the full PAS-ADD interview. The second psychiatrist was blind to the initial diagnoses made according to the Mini PAS-ADD questionnaire. A final psychiatric diagnosis was made according to International Classification of Diseases - 10th Revision (ICD-10) criteria. Some 14.4% (95% confidence interval = 7.4-21.4%) of the cohort had a psychiatric diagnosis according to ICD-10 criteria: 4.4% had schizophrenia, 2.2% depressive disorder, 2.2% generalized anxiety disorder, 4.4% phobic disorder and 1% delusional disorder. The overall rate of functional psychiatric illness (point prevalence) was similar to that found in the general population (16%). However, the rates of schizophrenic illness and phobic disorder were significantly higher in the study cohort compared with those in the general population (0.4% and 1.1%, respectively). Increasing age and the presence of physical disability were significantly associated with the occurrence of psychiatric illness. Out of the 11 remaining adults with severe ID, two (18%) had a diagnosis of a psychiatric illness (one mania and one anxiety disorder) according to the Diagnostic Assessment for the Severely Handicapped (DASH) questionnaire.

The aim of the present paper is to describe and compare services for adults with intellectual disability (ID) and mental health needs in five European countries: Austria, England, Greece, Ireland and Spain. A framework and structure for collecting information about service provision was designed. This information was collected through a mixture of interviews with service providers, questionnaires and a review of the research literature within each country. Information was collected on historical context, policy, legislation, assessment, treatment and the structure of services for people with ID and mental health problems. Overall, the needs of those with additional mental health needs have not been specifically addressed at a national level with perhaps the exception of England and Ireland, although there are still gaps in services in these nations. Normalization has been adopted in each of the five countries, and there are moves toward deinstitutionalization, integration and inclusion. Families and self-advocacy groups have grown. The pace of this change varies between and even within countries. The main findings of the study include: unclear policy, trends for legislative changes, increased prevalence of mental health problems, inadequate generic service provision, a need for specialist mental health services, a need for improved interconnections of services, and a need for training developments. Policy and legislation in the five European countries under consideration tend to separate the disability aspects of people with ID from their mental health needs. Consequently, the service needs of this group remain largely invisible. This might be a direct reflection of policy clarity and legislation, or could be the result of a failure to implement existing guidelines. This has a detrimental effect on the lives of people with ID, and their families and carers.

There is an increasing focus on the nutrition of people with intellectual disability (ID), but less interest in the range of eating disorders (EDs) that they may exhibit and the bio-psycho-social impact of these conditions. Despite diagnostic and methodological difficulties, psychopathology and ED research studies suggest that 3-42% of institutionalized adults with ID and 1-19% of adults with ID in the community have diagnosable EDs. Weight surveys indicate that 2-35% of adults with ID are obese and 5-43% are significantly underweight, but the contribution of diagnosable EDs is unknown. Such data and case reports suggest that EDs are associated with considerable physical, behavioural, psychiatric and social comorbidity. Review papers have focused on the aetiology and treatment of pica, rumination, regurgitation, psychogenic vomiting and food faddiness/refusal. Emerging clinical issues are the development of appropriate diagnostic criteria, multimodal assessment and clinically effective treatment approaches. Key service issues include staff training to improve awareness, addressing comorbidity and access issues, and maintaining support for adults with ID and EDs, and their carers. Research should confirm the multifaceted aetiology and comorbidity of EDs. Then multicomponent assessment and treatment models for EDs can be developed and evaluated.

Previous studies have reported that the rate of prescription of antipsychotic medication for people with intellectual disability is far in excess of the expected prevalence of psychoses for this population. Recent research identifying factors which predict the use of psychotropic medication suggests that challenging behaviour may play a key role in determining the receipt of antipsychotic medication. The present study reports the prevalence of psychoactive medication receipt for 500 people with intellectual disability living in different forms of residential provision in the UK. Variables which predict the receipt of psychotropic medication are also identified. The results show differences between forms of residential provision in rates of medication receipt. Analyses of predictors of psychotropic medication receipt suggest that, whilst the receipt of antidepressants is predicted by symptoms of mental ill health, the receipt of both antipsychotics and hypnotics/anxiolytics is predicted by variables related to challenging behaviour.

Previous research has found an unmet need for oral care among people with intellectual disability. The key factors which have been indicated are low expectations, fear of treatment, lack of awareness among carers and problems in accessing dental services. The withdrawal of many general dental practitioners (GDPs) from the National Health Service (NHS) may have exacerbated the latter problem in the UK. The aims of the present study were: (1) to assess the extent of unmet clinical needs in a group of adults with intellectual disability living in the community who were not in contact with the Community Dental Service (CDS); and (2) to explore their perceptions of teeth and contact with dentists to identify how oral care can be improved. Interviews were completed with subjects and/or carers and a dental examination was completed. There were higher levels of untreated caries (decay), and gingival or periodontal (gum) problems among the sample than in either the general population, or in a previous survey of CDS users at day centres and residential facilities. The subjects were largely unaware of dental problems, and used the appearance and absence of pain to judge the condition of their teeth. They depended greatly on their carers for decision-making and support with regard to visiting the dentist and tooth-brushing. Carers requested training in oral care and the use of dental services, and support in dealing with clients who have problems tolerating tooth-brushing. The subjects had experienced a wide variation in the treatment provided by dentists, but had not found it difficult to access a dentist despite recent reductions in the availability of NHS dental care. They expressed a particular need for a good relationship with their dentist and for their dentist to have personal skills in relating to people with an intellectual disability. Dental screening checks and oral care training for carers should be made easily available. Care plans should include tooth-brushing and dietary issues for all clients who have their own natural teeth. There are significant training issues for dentists in developing personal skills in total communication, disability awareness and attitudes which value people with intellectual disability.