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BACKGROUND: The Annual Health Check (AHC) program, as part of a Directed Enhanced Service (DES), offers an incentive to general practitioners (GPs) in England to conduct health checks for people with intellectual disabilities (IDs). The aim of this analysis was to estimate the impact on healthcare costs of AHCs in primary care to the NHS in England by comparing adults with ID who did or did not have AHCs using data obtained from The Health Improvement Network (THIN). METHODS: Two hundred and eight records of people with ID from THIN database were analysed. Baseline healthcare resource use was captured at the time the first AHC was recorded (i.e., index date), or the earliest date after 1(st) of April 2008 for those without an AHC. We examined the volume of resource use and associated costs that occurred at the time AHCs were performed, as well as before and after the index date. We then estimated the impact of AHCs on healthcare costs. RESULTS: The average cost of AHC was estimated at £142.57 (95%CI £135.41 to £149.74). Primary, community and secondary healthcare costs increased significantly after the index date in the no AHC group due to higher increase in resource utilisation. Regression analysis showed that the expected healthcare cost for those who have an AHC is 56% higher than for those who did not have an AHC. Age and gender were also associated with increase in expected healthcare cost. CONCLUSION: The level of resource utilisation increased in both (AHC and no AHC) groups after the index date. Although the level of resource use before index date was lower in the no AHC group, it increased after the index date up to almost reaching the level of resource utilisation in the AHC group. Further research is needed to explore if the AHCs are effective in reducing health inequalities.

Background Support staff of adults with intellectual disability (ID) play an important role in promoting independence in home and community settings. However, little is known about the types of behaviours staff should use to promote independence and instruments that assess such behaviour do not yet exist. The aim of this study was therefore to develop and initially validate a reliable questionnaire that measures the degree to which support staff display behaviours that promote independence in people with ID. Method The Leiden Independence Questionnaire for Support Staff (LIQSS) was constructed to measure the extent to which support staff promote independence in people with ID. The LIQSS was completed by 142 staff members working with people with ID. For the psychometric evaluation of the LIQSS, a principal component analysis was performed with an oblique rotation in all items. Next, the principal component analysis was performed with a forced three‐component extraction, and three sub‐scales were computed. To assess internal consistency, Cronbach's α was calculated for each of the sub‐scales. Results The LIQSS was found to consist of three internally consistent (Cronbach's α was respectively 0.92, 0.79 and 0.76) and meaningful components: (1) communication, agreements and coordination; (2) positive encouragement and tailoring; and (3) supporting independent performance. The final 22 items had factor loadings between 0.44 and 0.91 on their corresponding component and a minimal difference in loading to the other factors of 0.20. Conclusions The LIQSS appears to be an instrument with positive face validity and reliability (internal consistency) that assesses the degree to which support staff promote independence in people with ID. To increase the instrument's value for both scientific research and clinical practice, studies should focus on the further validation of the LIQSS.

A meta-analysis of prevalence and cohort studies conducted over the last 30 years was carried out to identify risk markers for challenging behaviour shown by individuals with intellectual disabilities (IDs). A total of 86 potential studies was identified from the review, with 22 (25.6%) containing sufficient data to enable a statistical analysis to be conducted. Results indicated that males were significantly more likely to show aggression than females, and that individuals with a severe/profound degree of ID were significantly more likely to show self-injury and stereotypy than individuals with a mild/moderate degree of ID. Individuals with a diagnosis of autism were significantly more likely to show self-injury, aggression and disruption to the environment whilst individuals with deficits in receptive and expressive communication were significantly more likely to show self-injury. In most cases, tests for heterogeneity were statistically significant, as expected. The meta-analysis highlighted the paucity of methodologically robust studies of risk markers for challenging behaviours and the lack of data on incidence, prevalence and chronicity of challenging behaviour in this population.

BackgroundGiven the much greater COVID-19 mortality risk experienced by people with intellectual disabilities, understanding the willingness of people with intellectual disabilities to take a COVID-19 vaccine is a major public health issue.MethodIn December 2020-February 2021, across the United Kingdom 621 adults with intellectual disabilities were interviewed remotely and 348 family carers or support workers of adults with intellectual disabilities with greater needs completed an online survey, including a question on willingness to take a COVID-19 vaccine if offered. Results87.0% of interviewees with intellectual disabilities 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. 81.7% of surveyed carers of adults with intellectual disabilities 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.ConclusionsReported willingness to take the COVID-19 vaccine is high amongst adults with intellectual disabilities in the UK, with factors associated with willingness having clear implications for public health policy and practice.

BackgroundThe active involvement of people with intellectual disabilities in research, or inclusive research, is relatively common. However, inclusive health research is less common, even though it is expected to lead to appropriate healthcare and increased quality of life. Inclusive health research can build upon lessons learned from inclusive research.MethodA total of 17 experts on inclusive (health) research without intellectual disabilities and 40 experts with intellectual disabilities collaborated in this consensus statement. The consensus statement was developed in three consecutive rounds: (1) an initial feedback round; (2) a roundtable discussion at the 2016 International Association for the Scientific Study of Intellectual and Developmental Disabilities World Congress; and (3) a final feedback round.ResultsThis consensus statement provides researchers with guidelines, agreed upon by experts in the field, regarding attributes, potential outcomes, reporting and publishing, and future research directions, for designing and conducting inclusive health research.ConclusionsConsensus was reached on how to design and conduct inclusive health research. However, this statement should be continuously adapted to incorporate recent knowledge. The focus of this consensus statement is largely on inclusive health research, but the principles can also be applied to other areas.

This article poses the question, 'Who is the expert?' in relation to people with intellectual disabilities. It begins with an exploration of what it means to assert moral authority in relation to people with IDs, and makes the argument that 'experts' who draw moral boundaries, define conceptions of the 'good' and quality of life for people must consider how to occupy this position responsibly. It then considers a second form of authority - epistemic authority - and explores the moral responsibility that accompanies the practice of putting forth knowledge claims about ID. This involves acknowledging three potential problems: distancing, oppression and dehumanization. The article concludes with questions that point towards greater interdisciplinary dialogue regarding authority, responsibility and the role of the expert.

Background Staff working within secure services for people with intellectual disabilities (ID) are likely to work with sexual offenders, but very little attention has been paid to how they think about this sexual offending behaviour. Method Forty-eight staff working within secure services for people with ID were recruited and completed the Attribution Style Questionnaire in relation to the sexual offending behaviour and challenging behaviour of men with mild ID. Attributions towards challenging behaviour and sexual offending were compared and relationships between level of ID and seriousness of the sexual offence were explored. Results The results indicated that staff attributed sexual offending as more external to the staff group than they did for challenging behaviour. Sexual offending behaviour was also seen as more stable, and less controllable by people with ID than was challenging behaviour. Sexual offending was also attributed as more uncontrollable by the staff group than challenging behaviour. There was a significant negative correlation between general intellectual functioning and several attributional dimensions regarding sexual offending, but not challenging behaviour. Sexual offending that was coded as more serious was attributed as universal and uncontrollable by the staff group. Conclusions The differences between staff attributions regarding challenging behaviour and sexual offending potentially relate to the decision-making processes involved in deciding whether or not to involve criminal justice agencies when someone with ID commits a sexual offence. Further research within this area is warranted.

Objectives To compare the nature and prevalence of use of procedures employed to treat and manage challenging behaviours across two approaches to providing community-based supported accommodation for people with intellectual disabilities (ID) and severe challenging behaviour: noncongregate settings where the minority of residents have challenging behaviour, and congregate settings where the majority of residents have challenging behaviour. Setting Community-based supported accommodation for people with ID and challenging behaviour. Design Longitudinal matched groups design. Main outcome measures The nature and prevalence of use of procedures employed to treat and manage challenging behaviours. Observed and reported severity of challenging behaviours. Results Both types of settings were associated with low prevalence of use of behavioural technologies for the reduction of challenging behaviour (less than 15% of participants). In contrast, high proportions of participant received antipsychotic medication in both noncongregate (56%) and congregate (80%) settings. Congregate settings were associated with the increased use of physical restraint as a reactive management strategy, with over half of participants being in receipt of physical restraint by two or more members of staff. Discussion Changes in reported and observed challenging behaviour over a 10-month period were slight. The use of evidence-based behavioural technologies for the reduction of challenging behaviour may have led to better outcomes.