Search

Many people with intellectual disabilities have complex health needs that are not met by the Australian healthcare system. The Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability (the Commission) looked at the failings of the healthcare system and the improvements needed. Services provided by allied health professionals are one part of the healthcare system. This article describes the evidence the Commission heard about the unmet allied health needs of people with intellectual disabilities, the resulting harms caused, and the recommendations to address these. Despite identifying unmet allied health needs, the Commission heard evidence predominantly about nursing and medical care, although many of its recommendations were applied to the entire health workforce, including allied health professionals. The article reflects on the challenges of implementing the Commission's recommendations and the risk that positive change in health outcomes for people with intellectual disabilities may not be achieved. [ABSTRACT FROM AUTHOR]

ABSTRACT Background Methods Findings Conclusions Individuals with intellectual disabilities often require various supports in their everyday lives. Many access both acute and intellectual disability services depending on their needs. Previous research has highlighted suboptimal experiences of care provided in acute services. Joint working between both services has been recognised as a measure of improving healthcare for this group. Although there is some evidence regarding this issue from the perspective of acute service providers, further research is required to understand the perspective of intellectual disability service providers.Ten nurses working in various roles in intellectual disability services across Ireland took part in semistructured interviews. The data were analysed using thematic analysis.Issues with inter‐service communication and insufficient policies, protocols and pathways were found to negatively impact joint working. Acute services seemed to have a limited understanding of the role and capacity of intellectual disability services. Acute services do not always identify the individual needs of the people in their care. Despite this, there were examples of joint working taking place that benefited those with intellectual disabilities.Joint working needs to include improving communication between both services, co‐developing policies, protocols and pathways and appointing acute care liaison nurses. [ABSTRACT FROM AUTHOR]

Introduction: This research focuses on the barriers and supports that influence the development of affective-sexual relationships as perceived by a group of people with intellectual disabilities. Method: 14 adults with intellectual disabilities participated in the study, and focus groups were conducted over 4 sessions. These were recorded and transcribed. The results were grouped into 7 themes: policy, professionals and services, families, friends, partners, the disabled people themselves and society. Results: Participants criticise the lack of knowledge about disability policy; they emphasise that they do not receive enough support from professionals, while describing the rules of support services as limiting; families are perceived as conditioners of sexuality; they highlight the difficulty of forming friendships and denounce society's prejudices, among others. Discussion: In recent years there has been a paradigm shift towards recognising the right of people with intellectual disabilities to have intimate relationships, but they continue to face denial of their "intimate citizenship". Analyses and changes in different areas of people's lives are proposed in favour of greater respect for Convention on the Rights of Persons with Disabilities (CRPD), especially in relation to sexuality. [ABSTRACT FROM AUTHOR]

People with intellectual disabilities commonly experience violent, abusive, and restrictive contexts, particularly those who are at risk of behaviours that challenge, behaviours that often are a sign of trauma, fear, pain, and loss of power. For example, the use of physical restraint and psychotropic medication to manage behaviours labelled as challenging is prevalent in services for people with intellectual disabilities, and has a negative impact on their wellbeing and quality of life. The Australian Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability has recommended a reduction in the use of restrictive practices, and that they only be used as a last resort. However, there is a risk that a narrow focus on behaviours labelled as challenging and their management through legislation, procedures, and authorisation by writing behavioural support plans fails to properly address the concerns of people with intellectual disabilities at risk of behaviours that challenge. There might not be enough incentive for the system-wide change required to properly meet the needs of this specific group. The closure of group homes, as recommended by the Commission, is appealing, given that abusive and restrictive practices are repeatedly uncovered in these settings. However, this might add to the precarious situation unless significant social change is made. Instead, perhaps more feasible, a plan to enable group homes become truly a home, safe and with highly skilled support available, should be developed. A framework based on the concept of capable environments might aid in this endeavour. [ABSTRACT FROM AUTHOR]

People living in rural areas of Australia are significantly disadvantaged, compared to metropolitan dwelling peers, in accessing basic support services. Australians with intellectual disabilities living in rural areas are at specific risk of further disadvantage. This article examines the findings and recommendations of the Disability Royal Commission through the lens of rurality. A frequency analysis of key words relating to rurality indicated an interesting trend in relation to the term "remote" which had a higher count rate than either "regional" or "rural". This finding may indicate that issues from non-remote rural locations were less well represented. The Final Report included many examples from people with intellectual disabilities or their carers regarding the lack of vital services in rural areas, and specifically highlighted the need to introduce a "provider of last resort". Problems with support were also identified following domestic violence and rape, and concerns noted regarding the provision of public transport in rural areas. The Final Report contains 222 recommendations, of which 11 contained a specific focus addressing a rural issue, and these are briefly discussed. It is unfortunate that, in some key support areas, there appear to be an implicit expectation that the remaining 200+ recommendations will all apply evenly across Australia, irrespective of location. Nonetheless, the Disability Royal Commission should be commended for their inclusive approach to involving people with disabilities living in rural areas which led to the reporting from rural people with intellectual disabilities and their carers regarding the issues that they have faced. [ABSTRACT FROM AUTHOR]

The Final Report of the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability has heightened national focus on the experiences of people with disabilities. The Commission made important progress in recognising that violence, abuse and neglect occurs in all the places that people live their lives. Attention is now on how governments and communities will prevent and respond to entrenched and difficult problems. The recommendations may not go far enough to dismantle the siloed approaches that cause abuse and make it difficult to respond effectively for people with intellectual disabilities, who face particular barriers. This article uses research on domestic and family violence experienced by children and young people with intellectual disabilities to illustrate this risk. Without transformative responses by governments and communities, the systems and structures that enable violence and abuse across sectors will not be adequately addressed. [ABSTRACT FROM AUTHOR]

Traditionally, people with disabilities have been excluded from the decision-making and governance of organisations that provide disability-related services. From a human rights perspective, people with disabilities should be involved in all decisions that affect their lives. This article is exploring the Disability Royal Commission's (the Commission's) findings on the inclusion of people with disabilities in the decision-making and governance of disability service providers, with a particular focus on findings that relate to people with intellectual disabilities. An analysis of the Commission's findings and recommendations was undertaken, with reference to relevant Public Hearing reports and other Commission publications. During the public hearings, the Commission was critical of disability service providers that did not include the perspective of people with lived experience in their decision-making and governance. The Commission recognised the capacity of people with intellectual disabilities to undertake governance roles, provided they receive necessary support. The Commission made several recommendations to increase the leadership of people with disabilities within disability-related organisations, including policy development and co-design roles. While the Commission supported the involvement of people with disabilities, including intellectual disabilities, in the governance of disability services, specific recommendations to guarantee, facilitate and resource such inclusion were missing. [ABSTRACT FROM AUTHOR]

This editorial introduces a two-part Special Issue on the Disability Royal Commission and People with Intellectual Disabilities in Australia. The Commission was established in 2019 to investigate violence, abuse, neglect, and exploitation of people with disabilities. The Commission's Final Report, delivered in 2023, included 222 recommendations, some of which were not unanimous. The report covers a wide range of issues and includes the perspectives of people with disabilities. The Commission's work involved public hearings, private sessions, and community engagements. The report has generated controversy, as it focuses on negative experiences and poor-quality services, without exploring positive experiences and factors contributing to good quality services. The text also discusses the challenges faced by governments in responding to the Commission's recommendations and mentions the release of the Independent Review of the National Disability Insurance Scheme (NDIS), which intersects with the Commission's recommendations. The text provides guidance on accessing the Commission's publications, submissions, public hearings, and other resources. It introduces the articles in Part 1 of a Special Issue that critically analyze the Commission's findings and recommendations on various topics related to people with intellectual disabilities. The text concludes by mentioning that Part 2 of the Special Issue will include additional articles on education, health, and Positive Behaviour Support. [Extracted from the article]

This systematic review synthesized the literature on digital health interventions for the promotion of physical activity (PA) among people with intellectual disabilities and/or autism. From an initial screening of 553 records, 10 studies underwent full-text review. Data were extracted relating to study, intervention, and sample characteristics and PA-related findings. Methodological quality was evaluated using the Crowe Critical Appraisal Tool. There were mixed findings pertaining to the effectiveness of digital health interventions for promoting PA among these populations. Positive results were reported for three of five active-video-game interventions, two of three social-media-based interventions, and one of two e-learning/multicomponent interventions. Digital health interventions can potentially be effective for promoting PA among people with intellectual disabilities and/or autism. However, the large variation in the samples and intervention types and a reliance on pre- and quasi-experimental research designs suggest that inferences should be made with caution and additional research is needed. [ABSTRACT FROM AUTHOR]

This study aimed to investigate the disaster or emergency coping skills of people with intellectual disabilities and the factors that affect these skills. The panel survey on the lives of people with disabilities from the 3rd dataset (2020) of the Korea Development Institute for the Disabled was used for this analysis. Response data from 275 people with intellectual disabilities aged 10 years or older were analyzed. Differences between disaster or emergency coping skill levels and sub-questions of skills, according to the general characteristics of people with intellectual disabilities, were identified, as well as factors affecting the level of disaster or emergency coping skills. The results show that the coping skills level was low; among the sub-questions, the use of fire extinguishers and awareness of the location of fire extinguishers or emergency bells in the event of a disaster or emergency were also low. Factors affecting the level of coping skills were found to be the level of education and experience in comprehensive disaster coping training. The results of this study suggest that training and education on disaster or emergency coping skills for people with intellectual disabilities are necessary and that programs should be developed for this purpose. [ABSTRACT FROM AUTHOR]

Background: The aim of the study was to identify the variables of the internal compensatory mechanisms that differentiate the body build and posture of people with Down syndrome (DS) from the intellectual disability (ID) population. It was assumed that gaining knowledge in the abovementioned aspect will allow for a better understanding of the limitation of the kinesthetic abilities of people with ID and DS and simultaneously enable to optimize the process of planning and interventions to improve physical activity in this population with the adequate use of theirs strengths in the biomechanical and morphofunctional systems. Methods: The methodology of this systematic review was developed according to the PRISMA guidelines. A search of PubMed, EBSCO, Scopus databases was conducted to identify all studies on DS/ID and the body build and posture from 2003 to 2023. Results: 395 articles were assessed to determine eligibility, while 22 studies met the inclusion criteria and were subjected to detailed analysis and assessment of their methodological quality. The differentiation of the body build and posture in DS population can be induced by both internal and external compensatory mechanisms. It is difficult to confirm the direct effect of the intrinsic variables that impact the body build and posture in the ID population, excluding people with DS. Conclusions: Compared to other ID, the intrinsic differences in the body build and posture in DS individuals were induced by gender, age, and level of ID. The tendency for diversity between DS and other ID populations in body build and posture may be determined by the presence of the third copy of chromosome 21 in DS group. Internal compensatory processes may be induced mainly by abnormalities in the structure of the cervical vertebrae and feet. IQ should not be used as the only variable that identifies the population of people with ID. [ABSTRACT FROM AUTHOR]

For example, only 28% of people with intellectual disabilities had weekly contact with someone who did not have an intellectual disability outside of their home setting (Bigby, [1]). Disability policy is increasingly dominated by the social model of disability and dismantling barriers to physical and social inclusion. People with intellectual disabilities are not obviously part of these policy conversations, which are dominated by those without cognitive impairments; and it is not clear who represents the people with more severe and profound intellectual disabilities (Bigby, [2]; Possibility, [12]). [Extracted from the article]

Overmedication of people with intellectual disabilities, particularly when psychotropic medications are used for challenging behavior (CB) in the absence of a psychiatric disorder, is a significant public health concern. Support staff play a pivotal role in influencing the prescribing process. Staff views and attitudes toward medication use for CB are therefore of paramount importance. We have conducted four focus groups involving support staff (n = 8), home managers (n = 5) and trainers (n = 3), two of which primarily explored participants' experiences and views on using medication for CB and medication withdrawal. Some participants felt medication use was justified, but others saw that as a form of chemical restraint. Most agreed that polypharmacy of psychotropics might lead to side effects. Some acknowledged the lack of shared decision-making involving people with intellectual disabilities and their families. There was universal anxiety about withdrawing the medication. All agreed on the need for more medication-related information. [ABSTRACT FROM AUTHOR]

Background: Despite growing recognition of their right for inclusion in society, people with intellectual disabilities are often excluded from mainstream services, or experience poor service outcomes. Method: Taking a relational approach that considers the interpersonal relations and interactions that occur in mainstream service settings in Australia, this paper examines the features of services that research participants considered more inclusive. Results: Relations between service users with and without intellectual disabilities, mainstream service staff and disability support workers in inclusive mainstream services were characterised by; respect; warm, welcoming and convivial interpersonal engagement; active listening; proactive assistance; flexibility; mediation to create a safe environment; and collaboration and shared responsibility by both mainstream staff and disability support workers in supporting a service user with intellectual disability. Conclusions: Building on these results, we put forward a set of principles for facilitating inclusion of people with intellectual disabilities in mainstream services. [ABSTRACT FROM AUTHOR]

The present study aimed to explore the situation of people with intellectual disabilities and their families during the first three months of the Russian invasion in Ukraine. Utilising a snowball sampling procedure, five participants were recruited to participate in this descriptive qualitative study. Thematic analysis was used to analyse the interviews. Five overarching themes emerged from the data: 1) The physical and mental well-being of people with intellectual disabilities was threatened due to a lack of fulfilment of basic needs; 2) People with intellectual disabilities experienced difficulties in finding safety within air-raid shelters; 3) People with intellectual disabilities and their families could only flee the country with help and support; 4) Creative solutions were developed to help keep in touch with and support people with intellectual disabilities and their families; and 5) Fear regarding the quality of life of and support for people with intellectual disabilities in the near future. Point of interest: This research is important as it raises attention for the vulnerable position of people with intellectual disabilities and their families in Ukraine during the war. People with intellectual disabilities experience difficulties when trying to access the safety of air-raid shelters. This study showed how people with intellectual disabilities and their families depend on help and support to be able to flee the country. During the war, people find creative ways to support people with intellectual disabilities and their families. People fear for the future quality of life and support for people with intellectual disabilities in Ukraine after the war. [ABSTRACT FROM AUTHOR]

Background: People with intellectual disabilities commonly experience multiple barriers to 'going out'. Aims: This paper explores what barriers prevented people from going out, and if the extent and nature of going out changed over time for people with intellectual disabilities as the COVID‐19 pandemic progressed. Methods: Data are drawn from a wider study that explored, at four time points, the experiences of people with intellectual disabilities through the COVID‐19 pandemic in the United Kingdom. Findings: The number of people leaving the house for almost all reasons increased over time through the pandemic, except for some outdoor participation and exercise. However, there was a significant decrease in outdoor exercise at the final time point of the study. Reliance on other people and a lack of availability of support were identified as barriers. Conclusion: A combination of factors restricted the extent to which people were going out even after COVID‐19 protections were lifted. [ABSTRACT FROM AUTHOR]

Background: People with intellectual disabilities remain disadvantaged in many aspects of everyday life. Capability approach is an underused approach in social care research and has at its core the importance of having capabilities or opportunities to do what we value. We use this approach to explore how people with intellectual disabilities can be supported to lead flourishing lives. Methods: Interviews and focus groups were conducted with 50 people with intellectual disabilities and 28 family carers. Data were analysed using an adapted template approach and conceptual analysis. Results: Our analysis led to the identification of one overarching theme; 'Doing what you love and growing' and sub‐themes; 'Choice, opportunity and empowerment', 'Being out in the world' and 'Lowered expectations and static lives'. Conclusion: People with intellectual disabilities can lead capability‐deprived lives. Methodological and practice innovation is needed to better understand what people value and ensure they have capability sets that enable flourishing lives. [ABSTRACT FROM AUTHOR]

Background: Caring for people with intellectual disabilities can be a challenging task, but it can also bring about positive experiences for family caregivers. The present study aimed to explore these positive experiences and shed light on the ways in which family caregivers of people with intellectual disabilities can find meaning and fulfillment in their roles. Methods: This qualitative study used conventional content analysis to explore the positive experiences of family caregivers of people with intellectual disabilities. Sixteen family caregivers from rural areas in southeastern Iran were purposively selected to participate in the study. Semi-structured in-depth interviews were conducted to collect data. The interviews were audio-recorded and transcribed verbatim. The data were analyzed using the method proposed by Graneheim and Lundman. Results: The data analysis resulted in the emergence of a single theme, which was achievements of providing care for people with intellectual disabilities. This theme was comprised of four main categories: a new outlook on life, family caregivers' peace of mind, strengthening of family ties, and improvement of social status. The provision of care for people with intellectual disabilities created positive changes, affecting family functioning and care provision for people with intellectual disabilities. Conclusion: It is recommended that families of people with intellectual disabilities focus on these positive experiences and share them with other families who may be struggling with a recent diagnosis of intellectual disability in their child. [ABSTRACT FROM AUTHOR]

While mental disorders have been broadly researched in people with intellectual disabilities (ID), comparatively less attention has been given to the conceptualisation of good mental health for this population. To capture existing concepts, definitions and measurement approaches of good mental health a systematic literature review was conducted following PRISMA guidelines. The search was carried out in eleven databases, using various synonyms of (i) intellectual disability, (ii) mental health, (iii) wellbeing, (iv) definition, and (v) assessment. A total of 2,046 datasets were identified, of which 37 met the inclusion criteria and were analysed using reflexive thematic analysis and content analysis. Results show four main themes: (1) environment, (2) absence of mental illness, (3) physical health, and (4) psychosocial functioning. The fourth was the most dominant theme and was further divided into five sub-themes: (1) emotionality, (2) interpersonal relations, (3) realise own potential, (4) personal resources, and (5) overall appraisal of life. Our findings reveal different conceptualisations of wellbeing, which is a vital part of good mental health, but highlight a notable research gap in the actual definition and conceptualisation of good mental health for people with ID. [ABSTRACT FROM AUTHOR]

In Europe, large numbers of people with disabilities are willing to work but have problems finding a job. One of the barriers to this is job complexity, particularly for those with low education, low IQ, or cognitive impairments. Digital technologies might help. Specifically, cognitive support technology (CST) has the potential to make jobs less complex and thus more accessible. CST may concern step-by-step digital instructions presented with monitors, tablets, smart phones, beamer projections, or near-eye displays. Based on cross-case evaluations, we aimed to define the success factors in the process of technology selection, development, and implementation. Four cases, situated at public social firms which offer jobs to people with disabilities, were selected. In each case, the optimal form of CST was selected. A qualitative analysis of subjective experiences of work accessibility, performance, usability, and acceptance was applied. The results were positive for most participants in most cases. Once installed, the CST was successful in simplifying jobs. A proportion of the workforce for which a specific job had been considered too complex was able to perform that job when supported by CST. Moreover, a majority of people judged the usability of the technology positively. For the consecutive steps of selection, development, and implementation, we ended up with eleven factors of success; these included, among others, shared and transparent decision making (in technology selection), the iterative and active involvement of workers to optimally adjust work instructions (in technology development), and explicit attention for psychosocial barriers (in technology implementation). [ABSTRACT FROM AUTHOR]

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]

Background: Evidence from the UK from the early stages of the covid-19 pandemic showed that people with Intellectual Disabilities (ID) had higher rates of covid-19 mortality than people without ID. However, estimates of the magnitude of risk vary widely; different studies used different time periods; and only early stages of the pandemic have been analysed. Existing analyses of risk factors have also been limited. The objective of this study was to investigate covid-19 mortality rates, hospitalisation rates, and risk factors in people with ID in England up to the end of 2021. Methods: Retrospective cohort study of all people with a laboratory-confirmed SARS-CoV-2 infection or death involving covid-19. Datasets covering primary care, secondary care, covid-19 tests and vaccinations, prescriptions, and deaths were linked at individual level. Results: Covid-19 carries a disproportionately higher risk of death for people with ID, above their already higher risk of dying from other causes, in comparison to those without ID. Around 2,000 people with ID had a death involving covid-19 in England up to the end of 2021; approximately 1 in 180. The covid-19 standardized mortality ratio was 5.6 [95% CI 5.4, 5.9]. People with ID were also more likely to be hospitalised for covid-19 than people without ID. The main determinants of severe covid-19 outcomes (deaths and/or hospitalisations) in both populations were age, multimorbidity and vaccination status. The key factor responsible for the higher risk of severe covid-19 in the ID population was a much higher prevalence of multimorbidity in this population. AstraZeneca vaccine was slightly less effective in preventing severe covid-19 outcomes among people with ID than among people without ID. Conclusions: People with ID should be considered a priority group in future pandemics, such as shielding and vaccinations. [ABSTRACT FROM AUTHOR]

Are behavioural and cognitive-behavioural interventions effective on outwardly directed aggressive behaviour in people with intellectual disabilities? Problem behaviours, such as aggressive conduct, are a major issue for individuals with intellectual disabilities and their caregivers. Carer training in mindfulness-based positive behaviour support versus positive behaviour supp... Two studies compared carer training in mindfulness-based positive behaviour support (MBPBS) to training in PBS. [Extracted from the article]

The assessment of well-being is crucial for measuring the effects of psychosocial interventions in people with intellectual disabilities. The aim of this study was to adapt and validate a measure of integrative well-being, the Pemberton Happiness Index (PHI) to use it specifically for this population. The Pemberton Happiness Index was first tailored to individuals with intellectual disabilities (PHI-Intellectual Disabilities). Then a sample of 130 adults with mild-moderate intellectual disabilities completed this adapted version alongside other well-being and affective measures. The psychometric properties of this new PHI-Intellectual Disabilities were shown to be very good (i.e., internal consistency, convergent and incremental validity). The study provides initial evidence of the reliability and validity of a brief measure of well-being that can be used for both applied and research purposes specifically for adults with mild-moderate intellectual disabilities. [ABSTRACT FROM AUTHOR]

The COVID-19 pandemic has had significant consequences for all areas of human life. This particularly applies to people with intellectual disability (ID) whose functioning and living environment are associated with many specific risk factors. The review is to determine what difficulties and changes in the psychosocial functioning of people with ID have been brought about by the COVID-19 pandemic and what factors may be important in dealing with them. Twenty studies focused on the experiences of people with ID during the COVID-19 pandemic were analyzed. All of these were qualitative (n = 16) and mixed-method studies (n = 4). The COVID-19 pandemic has caused significant changes in the lives of people with ID, mainly in the organization of support and services. This has had important consequences for their psychosocial functioning. There has been a decrease in competencies and social integration, and an increase in difficult behaviors and mental problems. The challenges related to the COVID-19 pandemic have also resulted in positive changes: people with ID have developed technology skills and personality traits such as responsibility for themselves and others. People with ID have mastered safety habits to a varying degree. It is important to support them in the time of the COVID-19 pandemic, maintaining a balance between protecting them from risk and ensuring their autonomy. [ABSTRACT FROM AUTHOR]

In Anglophone countries, the 40% of people with intellectual disabilities who show challenging behaviour, mental health problems, or both, are usually offered behavioural rather than emotional interventions. Yet much of their distress has originated in emotionally damaging personal histories, since children with intellectual disabilities are much more likely to experience adverse childhood experiences that predict significant mental health problems in adults. This clinical research review addresses that. It raises two issues: first, provision of effective support to parents (considered elsewhere); and second (the focus of this article), how services for distressed adults can address the untapped potential for development and growth in their emotional lives. A key finding in favour of an attachment perspective is that the emotional development of people with intellectual disabilities lags significantly behind their cognitive development, and their level of emotional rather than cognitive development predicts challenging behaviour. Two attachment assessments that can frame intervention have been considered: the Scale of Emotional Development–Short; and the Adult Attachment Projective Picture System. Related system changes necessary for services to implement attachment-informed interventions were then identified: specialisation rather than eclecticism, ensuring that trauma-informed care is applied with fidelity, and staff stability. [ABSTRACT FROM AUTHOR]

This study assessed the usability of three readily available Personalized Thermal Control Systems (PECS)—an electric blanket, a small personal fan, and a large pedestal fan—among individuals with intellectual disabilities living independently in energy poverty conditions in Chile. The research aimed to identify the primary usability challenges that affect the adoption and operational effectiveness of these technologies and, consequently, their potential to enhance thermal comfort. Results indicated that devices with more advanced control features, i.e. the large pedestal fan, presented the most significant usability challenges, followed by the electric blanket and the small personal fan. Key usability issues included poor visibility, inadequate material choice, ineffective communication, bad affordance, and inadequate levels of touch sensitivity of the control interface in these PECS. The study also showed a large variance in the level of adoption of the PECS among participants, thereby indicating that users have different individual attitudes, ranging from passive acceptance to proactive exploration and use. To conclude, this study advocates for the necessity of developing easily operable PECS that cater to the specific needs of individuals with intellectual disabilities, thereby supporting their autonomy and improving their quality of life in thermally comfortable environments. • Usability barriers impact PECS adoption for disabled users. • Main issues relate to visibility, material, feeback, affordance, sensitivity. • Mayor usability problems led to passive acceptance or lack of use. • Better usability led to proactive use and empowerment. [ABSTRACT FROM AUTHOR]

Background: Previous research has shown that people with intellectual disabilities have limited sexual knowledge, which can be essential for developing positive sexuality. This study aimed to check the validity and reliability of an assessment tool (SexKunn) for measuring the sexual knowledge of people with intellectual disabilities in Norway. Further, we aimed to identify potential knowledge gaps among the participants and highlight their potential impact Methods: 37 people with intellectual disabilities completed one assessment. 20 participants then completed a retest. Clinicians' (n=23) views on the assessment tool were measured to obtain face validity. Positive and negative agreement analysis was used to identify potential dimensions in the data. Results: A weighted Cohen's kappa for the test and retest of the overall scores was considered to be substantial. The clinicians described an acceptable face validity regarding high positive value scores and low negative burden scores. They also suggested improvements. The study identified that the participants lacked knowledge about female genitals, hygiene, appropriate touching/sexual acts with friends/intimate partners, and contraception. Conclusions: The SexKunn is a feasible assessment tool to measure sexual knowledge in people with intellectual disabilities. A lack of sexual knowledge of people with intellectual disabilities may violate their sexual rights. [ABSTRACT FROM AUTHOR]

Data from the World Health Organization indicate that the unemployment rate for people with disabilities can reach 80% in some countries. In Western societies, employment for people with physical or sensory disabilities is settled through inclusive practices in ordinary settings, according to the interests of the person. In the case of people with intellectual and developmental disabilities, it is frequently developed through segregating and not very emancipatory practices, which severely restricts professional development options. This article develops the state of the art regarding research on the professional development of people with intellectual and developmental disabilities. The different studies are classified according to the six main models of professional development, where trends and main contributions are observed. Results show a low number of investigations, with a predominance of the sociocognitive approach, which is focused on self-efficacy. The conclusion highlights the need to investigate from an emancipatory perspective, which contributes to overcoming the barriers and promotes practices that advance towards social justice and equity for people with intellectual disabilities. [ABSTRACT FROM AUTHOR]

Caregivers of people with intellectual disabilities may feel overburdened in their work and experience negative psychological consequences. The purpose of this instrumental study was to determine the evidence of internal structure and reliability of the Zarit Caregiver Burden Interview scale. A total of 398 family caregivers, including women and men, participated (M = 47.33, SD = 10.44). The structure of the scale was evaluated by factor analysis and the McDonald Omega coefficient was used to estimate reliability. Sixteen models of the scale were tested, differing in number of items and factor structures. A model of 15 items and 4 dimensions (overload, competence, social relationship, and interpersonal relationship) obtained acceptable fit (χ2 = 184.72; p < 0.001; CFI = 0.95; TLI = 0.94; RMSEA = 0.055; SRMR = 0.05) and reliability coefficients above 0.70 in their dimensions. It is concluded that the Zarit scale is valid and reliable for use in caregivers of people with intellectual disabilities. [ABSTRACT FROM AUTHOR]

COVID-19 pandemic is a public health issue. From 2019 to 2022, 4.5 million people died from the COVID-19 epidemic. Consequently, COVID-19 has put a significant strain on every single creature in this world. COVID-19 has been associated with lockdown, thus resulting in lockdown related inequities towards most people in this world, with unanticipated consequences for people with disabilities. Building in this debate, this paper aimed to discuss on the impacts of COVID-19 on the physical health of People with Intellectual Disabilities. Based on the Prisma protocol, this systematic literature review examined 28 publications from Web Sources of Science and Scopus.The study identified three themes regarding the impact of COVID-19 on the physical environment of people with intellectual disabilities namely mental health, social isolation, severe health problems, socioeconomic and psychology. This study has significant implications in understanding how PWID are impacted by COVID 19 and urged that early preventative measures should be taken since People with Intellectual Disabilities are considered a vulnerable population, therefore it is crucial to ensure that their health status are sustained. [ABSTRACT FROM AUTHOR]

This study analyzes the relationship between the employability competencies acquired after completing an employment training program at university and the subsequent access to employment of young people with intellectual disabilities. To do this, the employability competencies of 145 students were analyzed at the end of the program (T1) and information was gathered on their career path at the time of the study (T2) (n = 72). Sixty-two per cent of the participants have had at least one job since graduation. Job competencies increase the probability of accessing and retaining employment in students who graduated at least 2 years before (X 2 = 17.598; p <.001; r2 =.583). These results compel us to complement employment training programs with new opportunities and greater job accessibility. [ABSTRACT FROM AUTHOR]

Background: Access to housing for people with intellectual disabilities is often constrained by lack of choice, control and can often be inappropriate or unsafe. To enable people to remain at home and participate in their occupations, a collation and review of theories and models supporting good home environment design offers a view from which practice could be advanced. Method: A scoping review was used to map the literature on theories and models on home environmental designing, which can have influence on the occupational performance and participation of people with intellectual disabilities. The theories and models found were analysed using the lens of the Person-Environment-Occupation-Performance model. Results: Four themes supporting the understanding of environmental home design that can influence participation and well-being were found. These were offering safety and comfort; providing control and choice to manage stress; offering skill acquisition for continued learning and interest; and the person–environment interaction for function and participation. The themes are discussed in relation to participation in occupation and well-being for people with intellectual disabilities. Conclusion: The study contributes knowledge to practitioners and stakeholders on theories and models of home environment design which could support the occupational performance, participation and well-being of people with intellectual disabilities. [ABSTRACT FROM AUTHOR]

Background: Although the current preventive measures relating to COVID-19 can lead to challenges in the daily work of direct support workers (e.g. keeping 1.5 m distance), it remains vital to uphold the principles of person-centred care when working with older people with intellectual disabilities. The current study explores the extent to which direct support workers have been able to apply a specific form of person-centred care (i.e. integrated emotion-oriented care, or IEOC) when working with older people with intellectual disabilities during the COVID-19 pandemic. Method: Six direct support workers from five facilities serving older people with intellectual disabilities in the Netherlands participated in this qualitative study. They participated in a two-hour focus group, which was transcribed verbatim, and the transcript was analysed thematically. Results: Three themes emerged: (i) the negative impact of changes due to the COVID-19 measures on service users; (ii) the adaptation of direct support workers to changes due to the COVID-19 measures; and (iii) putting the needs and wishes of service users first. Conclusion: This study provides first impressions into the experiences of direct support workers providing person-centred care to older people with intellectual disabilities during the COVID‐19 pandemic. [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]

Changing disease patterns and improved life expectancy have resulted in a growing cohort of older Australians with an intellectual disability, with the provision of end-of-life care to this group only recently emerging as a priority area. Particularly in rural settings, where the availability of both specialist and general local services may be limited, end-of-life care support remains under-explored. The current project aimed to specifically examine end-of-life care provision in rural areas, the focus of this article being individual quality-of-life during the end-of-life stage. The study used a focus group interview model with 22 rural disability support workers from either New South Wales or Queensland, who had direct experience in providing end-of-life care. An advisory committee, composed of people with intellectual disabilities, carers, and service providers, offered overall project guidance. Participants elaborated on factors that contributed to quality-of-life during end-of-life care. Verbatim transcripts of the focus groups were thematically analysed by the team, and three thematic categories identified: availability of services; individual needs; and untreated pain. Specifically, participants noted concerns about the unavailability of health services, inflexibility of funding support, artificial government barriers, and a widespread lack of pain relief for individuals. We conclude that end-of-life support people with intellectual disabilities in rural areas has to trade off the ongoing delivery of quality-of-life activities against the increasing need for health care, which itself is subject to accessibility issues, and which is exacerbated by the more general funding challenges seen across all locations with the National Disability Health Insurance implementation. [ABSTRACT FROM AUTHOR]

The focus on the relationship between supporting staff and people with intellectual disabilities will go beyond only providing people with disabilities with high-quality, effective care. The article by Clegg and Lansdall-Welfare ([1]) addresses the complexities of working with people with intellectual disabilities and the challenges related to reducing problematic behaviour such as self-harm, aggression, and violence. [Extracted from the article]

Diagnosing dementia in people with severe/profound intellectual (and multiple) disabilities (SPI(M)D) is complex. Whereas existing dementia screening instruments as a whole are unsuitable for this population, a number of individual items may apply. Therefore, this study aimed to identify applicable items in existing dementia screening instruments. Informant interviews about 40 people with SPI(M)D were conducted to identify applicable items in the Dementia Scale for Down Syndrome, Behavioral and Psychological Symptoms of Dementia in Down Syndrome II scale, Dementia Questionnaire for persons with Mental Retardation and Social competence Rating scale for people with Intellectual Disabilities. Among 193 items, 101 items were found applicable, categorized in 5 domains: behavioral and psychological functioning (60 items), cognitive functioning (25), motor functioning (6), activities of daily living (5) and medical comorbidities (5). Identifying applicable items for people with SPI(M)D is an essential step in developing a dedicated dementia screening instrument for this population. [ABSTRACT FROM AUTHOR]

Abstract\nPoints of interestThis paper unveils the story of Wilhelm, an individual with intellectual and physical disabilities in the context of eugenics practices during the Nazi regime. The findings of the singular case study are presented in a storytelling format, for contextual understanding, and to help everyone better comprehend the challenges faced by individuals with intellectual disabilities. Wilhelm’s story has been discussed through the lens of social justice shaping his world into one in which violence was justifiable. Lessons have been drawn to advocate for ongoing evaluation of social justice concepts, guided by criteria that reflect the realities and voices of the individuals involved. Additionally, we seek to enhance possibilities to unveil stories and honor the memory of individuals with intellectual disabilities who endured the atrocities of the Nazi era.Exploring the untold stories of people with intellectual disabilities during the Nazi era helps us understand their experiences, ensuring their voices are heard, remembered, and honored.By sharing a personal story, this research helps everyone gain a clearer picture of the struggles faced by individuals with intellectual disabilities.This work sheds light on a lesser-known part of history, showing how the Nazi regime’s eugenics policies impacted individuals with intellectual disabilities and their families.By learning from the past, this research deepens our understanding of the systemic discrimination these individuals have faced and inspires efforts to rethink social justice in ways that truly reflect their experiences and needs. [ABSTRACT FROM AUTHOR]

Background: In people with intellectual disabilities and/or autism spectrum disorder, oral midazolam (OM) is very effective as premedication for facilitating medical treatment. In this retrospective study, we investigated the optimal dosage of OM for premedication. Methods: Patients with intellectual disability and/or autism spectrum disorder who were given OM as a premedication were selected from anaesthesia records. The primary outcome variable was the dose of OM (mg/kg) required to produce an adequate sedation. Results: The mean OM dose required was 0.32 ± 0.10 mg/kg. The required OM dose decreased significantly as age and weight increased, and age and weight were also shown to be significantly associated with the dose of OM in the multivariate linear regression analysis. Conclusion: The dosage of OM to achieve adequate sedation should decrease as the patient ages. Furthermore, adequate sedation can be achieved with even lower doses of OM in obese people. [ABSTRACT FROM AUTHOR]

Background: Research into befriending for people with intellectual disabilities is limited. This study aimed to explore the impact, mechanisms of change, and limitations of a befriending scheme for adults with intellectual disabilities and/or autism. Methods: Participants were recruited using convenience sampling. Thirteen individuals with intellectual disabilities and/or autism were interviewed and data thematically analysed. Results: Four themes were generated: 'Something fun for me'; 'A good connection'; 'Increasing independence'; and 'A life less quiet'. Befriending had direct benefits through the activities undertaken and the befriending relationships themselves being fun and reducing isolation. Befriending facilitated belonging, improved access to mainstream activities, and fostered independence by providing safety and support. The importance of shared interests and external support for the relationship was highlighted. Conclusions: Positive outcomes of befriending were found, supporting existing literature and revealing new information from the voices of participants with intellectual disabilities themselves. [ABSTRACT FROM AUTHOR]

For example, acquiring, storing, and disposing of medication (medication management), route, frequency and monitoring for adverse reactions (medication administration), and communication and medication review (administration). Legislative limbo leaves the disability sector walking a tightrope to avoid potential medication harm towards people with intellectual disabilities. In a recent systematic review, Sheerin et al. ([5]) identified a limited number of practice frameworks for administering medication; no assessment tools for medication management in settings for people with intellectual disabilities were found; and only one specific framework (the Tasmanian medication framework) was identified. [Extracted from the article]

Formal language: This paper discusses inclusive research and epistemic justice by using an example of a published study the authors conducted on intellectual disability and sexuality in supported living environments. Our study addressed taboos and pushed boundaries in content and methodology through two ways of inclusive research: (1) the second author of this paper who has an intellectual disability was a main researcher in the study; and (2) we interviewed people with intellectual disabilities about their own experiences as well as their desired solutions to obstacles they face in their supported living environments. Their input was centralized in the final research report. This method challenged the epistemic injustice of who have historically not been 'allowed' to produce knowledge in research. This paper offers historical insight into epistemic injustice as well as relational approaches from critical disability studies and non-Western understandings of disability that 'rethink' disability and that can thus promote epistemic justice in academic theory. By addressing both practice and theory in this paper, we aim to contribute to the growing body of inclusive research and to the epistemic justice of people with intellectual disabilities. Plain language: (1) Epistemology = thinking about knowledge, producing knowledge, sharing knowledge. (2) In history, people with intellectual disabilities have often been excluded from participating in this. This is called epistemic injustice. It is caused by the discrimination of people with intellectual disabilities (ableism). (3) Performing inclusive research with people with intellectual disabilities challenges this. It contributes to epistemic justice. Researchers and interviewees with intellectual disabilities can bring knowledge from lived experience into research. (4) Knowledge from lived experience has not always been valued in traditional research. That means we also need to think differently about 'knowledge', and about 'disability' and its 'value'. (5) Discrimination based on disability has a long history. For instance: during colonialism by European countries (starting in the 15th century), false ideas about 'poor health' and 'low intelligence' were already used to justify slavery. People with disabilities have often been locked away or even killed because they have been seen as 'less valuable'. These ways of thinking still exist. They influence our understanding of 'epistemology' because they decide whose way of thinking and way of life is valuable or not valuable. We need to change this way of thinking. (6) Some academic fields that help are critical disability studies, indigenous studies, and feminist posthumanism. These fields challenge ableist ways of thinking. They can help us understand disability as something that is not negative or less valuable, but simply part of what makes us human. [ABSTRACT FROM AUTHOR]

Abstract\nPoints of interestThe online learning resource ‘Every Moment has Potential’ (2015) aimed to teach direct support professionals about the values underlying active support, especially choice and control. This is unsurprising: these values anchor disability rights activism and policies. However, accompanying videos meant to illustrate choice and control offer a more nuanced story. My qualitative analysis brings in Lori Marso’s concept of freedom in the encounter to theorize four kinds of encounters in active support relationships: encounters that treat people as people; encounters that encourage surprise and spontaneity; encounters of mutual and safe touch; and challenging encounters. I aim to question critically the explicit values alongside the practices of active support. Plus, by using online YouTube videos as analysis, I hope to encourage more creative ways to include people with severe and profound intellectual disabilities in academic work, especially theoretical and philosophical work about intellectual disability.Support workers help people do things, like cook, clean, shop, and have fun.Some people say that support workers should help people with disabilities make choices.I watched videos that showed support workers helping people with intellectual disabilities to see if this was true.Helping people make choices is good, but good support workers help in other ways, too.Good support workers treat people with intellectual disabilities like people. They help people with intellectual disabilities have fun. They try new things together. And support workers and people with intellectual disabilities can use physical touch with each other in good and safe ways. [ABSTRACT FROM AUTHOR]

This research investigated the views of different stakeholders regarding the specialist mental health service for people with intellectual disabilities (ID) in Singapore. Interviews were conducted with mental health professionals, family carers and service users with ID. Framework analysis was adopted to identify common dominant themes among the different participant groups. Analysis revealed four themes 1) Giving choice and autonomy; 2) Training to become competent; 3) Respect and 4) Part of the community People with ID living in Singapore have limited opportunities to express their choices and autonomy especially when it comes to treatment planning. Family carers have a significant influence on the level of community presence of their relatives with ID. Participants identified employment for people with ID as a way to improve public perceptions. There was no mention of people with ID developing social relationships. Recommendations are discussed in the context of current service provision. [ABSTRACT FROM AUTHOR]

The aim of this study is to validate a Spanish version of the Impact of Event Scale on People with ID (IES-ID). IES-ID was administered to adults with ID (n = 120), analyzing internal consistency, inter-rater and test-retest reliability, criterion validity, construct validity and feasibility. Good internal consistency was found in the total of the scale (α =.91). Test-retest and inter-rater correlations yielded excellent level of agreement in the total scale. Criterion validity was significant. Regarding construct validity, the factor analysis yielded three well-defined factors and the model fit of the confirmatory factor analysis appears to be very good. Finally, the feasibility was also very good. The Spanish version of the Impact of Event Scale for People with ID (IES-ID) showed adequate indexes of feasibility and reliability to assess the severity of PTSD symptoms in adults with borderline to moderate ID. [ABSTRACT FROM AUTHOR]

Background: People with intellectual disabilities are often left out of research on important topics. This exploratory study investigated their views on barriers and facilitators to accessing care at end of life, both at home and in a hospice setting. Method: This qualitative study used reflexive thematic analysis. Two focus groups were held via Zoom with a total of four participants. Results: Three themes were produced: Unsettling Transitions, Maintaining Familiarity, and Respecting People's Wishes. Keeping things as unchanged as possible at end of life was highlighted as an ideal. Respecting people's wishes and education were highlighted as facilitators to good end of life care. Conclusions: The themes identified in this study highlight the fears and wishes of this population with regards to receiving quality end of life care. Training for staff and families, as well as advanced care planning, could focus on enhancing facilitators and decreasing barriers for this population. [ABSTRACT FROM AUTHOR]

This article demonstrates the important role family narratives can play in providing ethical, person‐centred support for people with severe intellectual disabilities living in supported accommodation. Focusing on the story of Daniel, a 65‐year‐old man residing in a group home in Australia, I illustrate, through the lens of his mother Arleen, how family narratives foreground those with intellectual disabilities as holders and makers of memories, offering valuable social and narrative contexts for their ethical treatment. I conceptualize family narratives as evolving frameworks that give meaning to the lives of people, both individually and as a group, grounding shared and individual ways of being and understanding through the passage of time. In a time where the disability sector increasingly emphasizes personal autonomy and choice for service users, I argue for an embodied understanding of ethics, of paying the other their due, by attending to the stories that constitute people as relational beings. This is particularly relevant in the context of consumer‐oriented support, which can drive individualizing, one‐size‐fits‐all approaches to a person's ethical treatment. Such narratives have the potential to influence professional practice and promote a more connected approach to person‐centred support that recognizes the embodied and relational dimensions of our lives. [ABSTRACT FROM AUTHOR]