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Long-COVID (also known as post-coronavirus-19 syndrome) is a term used to describe symptoms that people experience following their recovery from the COVID-19 virus. The severity of long-COVID is well recognised, with healthcare providers commissioning services to diagnose and treat those affected, as well as funded research into the condition.We performed a systematic search for relevant articles but were unable to find any research on long-COVID in people with intellectual disabilities. Due to the lack of data, we have only been able to make extrapolations from what is known about the condition within the general population.We provide an overview of long-COVID and its potential relevance to people with an intellectual disability. We have focused specifically on symptoms or signs, prevalence, risk factors and treatments of the condition in this group, highlighting areas for clinical practice and future research from a psychosocial perspective. We raise serious questions about our current understanding and the availability of the evidence-based to inform treatments tailored towards this population.This is the first report that we are aware of on the topic of long-COVID in people with an intellectual disability. The lack of research is preventing us from gaining a greater understanding of how the condition impacts people with an intellectual disability.

Background: Professional support for people with intellectual disabilities is increasingly delivered remotely. Understanding what support workers do to support people with intellectual disabilities remotely, and how they do this, is therefore important. The purpose of this study was to gain insight into the remote support practice of the support staff of the Dutch service DigiContact. Methods: A qualitative study was performed in which we followed an inductive-iterative process and used different sources of information: documents, interviews with people who are supported by DigiContact and their caseworkers, and interviews with DigiContact support workers. Findings: Seven themes were constructed and described. Four themes reflected the support activities of DigiContact support workers, and three themes reflected qualities that guide how the support is provided. Conclusions: A remote support context can bring both challenges and opportunities to the practice of supporting people with intellectual disabilities. The findings can be useful for service organisations who are contemplating the adoption of remote support initiatives for people with intellectual disabilities.

© 2021 The Authors. This is an open access article under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

The transition from adolescence towards young adulthood, and from living in parental care towards independence, is potentially challenging for all young people (Barry, 2005; Booyens & Crause, 2014; Dhillon et al., 2011; Philipps, 2014; Young et al., 2011). Research around the world has consistently shown that this transition is especially difficult for young people who grew up in residential or foster care (Mann‐Feder & Goyette, 2019; Mendes & Snow, 2016; Stein & Munro, 2008; Van Breda, 2018), who are referred to as care leavers. Similarly, research on the transitions of young people with intellectual disabilities and/or autism towards adulthood shows the transition to be more complex than for nondisabled young people (Gauthier‐Boudreault et al., 2017; Young‐Southward et al., 2017). However, far less research has been done on the transitions of care leavers with disabilities. The small body of available research in this area indicates the transition from care is even more difficult for young people with disabilities, due to both the possible challenges impairment may create for the young person and the lack of support systems for disabled young people in society (Cheatham et al., 2020; Harwick et al., 2017,2020; Kelly et al., 2016; Mendes & Snow, 2014; Roberts et al., 2018; Snow et al., 2016). This study focuses on young people with intellectual disabilities and/or autism spectrum disorder (ASD) who grew up in South African Child and Youth Care Centres (CYCCs). CYCCs are residential care homes for children who have been removed from parental or kinship care by the child welfare or child protection system, due to concerns about the adequacy of care and protection of the children. Some CYCCs have onsite schools (Department of Social Development, 2010). However, few CYCCs make provision for children with intellectual disabilities and/or autism, opting rather to make use of special schools in the local community. The COVID‐19 crisis, which is likely to reverberate through the coming years, has raised additional challenges for all young people transitioning to young adulthood. This is due to the lockdowns and their negative impact on national and global economies and educational institutions, potentially delaying learners’ transition into employment. Many job opportunities such as apprenticeships have evaporated because of workplaces closing or reducing staff. The freedom of movement to explore, socialise and mature that is typical of young adulthood has been substantially curtailed, keeping young people housebound and isolated. Research on the impact of COVID‐19 on youth transitions is rapidly emerging, though much of it is conceptual and not based on interviews with young people (Blustein et al., 2020; Jackson, 2020; Settersten et al., 2020). Research on the impact of COVID‐19 on care leaving is beginning to emerge, initially in the form of online pieces (Canning et al., 2020; Coram Voice, 2020; Ward, 2020) and in grey literature reflecting research findings (Baginsky & Manthorpe, 2020). Academic publications on care leaving during COVID‐19 (Crawley et al., 2020; Kelly et al., 2020) and on disabled young people during COVID‐19 (Ameis et al., 2020) are only beginning to emerge, and attention has not yet been given to the impact of COVID‐19 and lockdowns on the care leaving journey of care leavers with intellectual disabilities. This paper's authors initiated a longitudinal study in South Africa of the care leaving journey of young people with intellectual disabilities and/or autism in October 2019, with the intention of regular interviews with a group of care leavers and their caregivers over the following 12 months, to narrate their journey towards greater independence. In late March 2020, however, the country was locked down with stringent public health restrictions (Arndt et al., 2020), many of which remain in force at the time of writing. Our study was consequently undermined, not only by the inability to continue face‐to‐face interviews, but also by the structural limitations on our participants’ move towards independence, which was the focus of our study. The aim of this paper, therefore, is to explore the implications of COVID‐19 and its associated lockdown periods on the experiences of leaving CYCC care among this group of care leavers with intellectual disabilities and/or autism at 18 years of age, drawing on their own and their caregivers’ perspectives. This will shed light on a rare event in global history, where young people's movement into adulthood is being curtailed due to a public health crisis. In the following section, we briefly review the literature on the transitional experiences of care leavers with disabilities, located within a critical social model of disability. Following the account of our methodology, we present three themes that emerged through our analysis of the data. We then discuss these findings, outline key limitations and present lessons for improved services to care leavers with intellectual disabilities during a pandemic like COVID‐19.

Background: There is relatively little published data that report the experiences and views of family carers of people with intellectual disabilities who display challenging behaviour who are prescribed psychotropic medication. / Materials and methods: An online structured questionnaire was created by the Challenging Behaviour Foundation, a UK charity, and family carers of people with intellectual disability. Questions concerned the management of challenging behaviour and asked family carers about their experiences and views on the use of psychotropic medication. Responses were gathered between August and October 2016. Results are summarised using descriptive and inferential statistics and descriptive analysis of free‐text comments. / Findings: Ninety‐nine family carers completed the survey. Family carers reported gaps in the holistic and proactive management of challenging behaviour. Whilst some felt involved in decisions around psychotropic medication prescribing, others described feeling marginalised and lacking information and influence. The decision to prescribe psychotropic medication evoked complex emotions in family carers and medication use was associated with mixed outcomes in those prescribed. Family carers identified areas of good practice and those areas where they believe improvements are needed. / Conclusions: Psychotropic medication should be only one option in a multimodal approach to challenging behaviour, but this may not always be reflected in current practice. Greater effort needs to be made to ensure that services are equipped to provide optimum care and to embed shared decision‐making into routine practice.

Accessible Summary Lots of people with intellectual disabilities in the UK are given medication to manage their behaviours and the NHS wants this to stop. In Cornwall, we wanted to see how often we give medication to people instead of other health care such as communication or occupational assessments etc. We found that around half the people we work with because of their behaviours get medication to manage their feelings and many do not get other assessments. We want to change this in Cornwall and stop over medicating people by learning from this study. AbstractBackground The use of psychotropic medication to manage challenging behaviours of people with intellectual disabilities is a contentious issue which NHS England has now focused on. This paper looks to evaluate this within the multidisciplinary context. Method Records of clients (n = 106) open to a Community Intellectual Disabilities team for care relating to challenging behaviours were examined. Those recommended psychotropic medications in the absence of a mental health diagnosis were scrutinised for supporting MDT assessments. Results Over half the clients with challenging behaviours were being prescribed psychotropic medications and many of those had very few MDT assessments to inform care. Conclusions This study demonstrates the extent psychotropics are used in the absence of MDT informed support for people with intellectual disabilities and behaviours that challenge. A vision to simply withdraw such medication might be simplistic. Local MDT plans are in development to systematically reduce reliance on this type of restrictive practice.

Accessible summary Some people who find it hard to manage their emotions can be helped by a therapy called Dialectic Behaviour Therapy (DBT). Some studies show that DBT might help people with an intellectual disability. We ran a group to see if DBT helped people coming to the group to feel better and manage their difficult feelings more easily. Group members brought their support staff to the group. We asked people what they thought about the group and asked them to fill in some questionnaires to see whether they felt better. The group seemed to help people, even after the group ended. We think DBT might be a useful treatment for people with intellectual disabilities. AbstractBackground A growing body of evidence supports the use of Dialectic Behaviour Therapy with people with an intellectual disability. Various adaptation have been used in studies exploring the efficacy of this intervention. Method A Dialectic Behaviour Therapy DBT skills training group was attended by people with an intellectual disability and their support staff. Standardised measures of psychological well-being, overall functioning and psychological distress were taken before and after the group and at 4 months follow-up. Qualitative interviews were conducted and analysed using thematic analysis. Results Results suggested an improvement in all areas for three of the four participants, which were largely maintained at follow-up. Conclusions This study adds to the growing literature supporting the use of DBT with people with an intellectual disability. The role of support workers in supporting generalisation of skills is considered. Ideas for improving the quality of future studies are considered.

© 2017 The Authors. British Journal of Learning Disabilities published by John Wiley & Sons Ltd. This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

© 2016 John Wiley & Sons Ltd Accessible summary: We talked to people with intellectual disabilities and their carers about being healthy. Sometimes it was difficult for people with intellectual disabilities to take part in activities that would help keep them healthy. Being active is not just about doing special sports and activities. It can be part of everyday life. People with intellectual disabilities could become more active and be healthier with help from their carers. Abstract: Background: The prevalence of obesity, inactivity and related morbidity and mortality is higher amongst people with intellectual disabilities than in the population in general, an issue of global concern. This research examined the perspectives of people with intellectual disabilities and their carers, on exercise and activity. Materials and Methods: Qualitative data were collected via interviews and a focus group with people with intellectual disabilities and their paid and family carers, recruited via state-funded community-based day centres in Scotland. Results: Three barriers hindered service users with intellectual disabilities from regular involvement in physical activity: (i) acceptance of an inactive lifestyle by carers; (ii) restrictions on activity due to paid carer preferences and resource limitations; (iii) communication issues between family carers and paid carers. Barriers were based on assumptions made by paid and family carers, so there is potential to increase activity by changing attitudes, improving communication and reconceptualising activity as integral to everyday living, rather than as additional exercise requiring special resources. Conclusions: Carers should be supported to promote physical activity in a variety of ways to enhance the motivation of service users, to encourage them to engage with physical activity as an integral part of a healthy lifestyle and to transfer this to their lives beyond day care.

Accessible summary Both good and bad things can happen when people use the Internet, and people with learning disabilities are not using the Internet as much as other people. Worry about the bad things that can happen online might be one reason people with learning disabilities are not supported to access the Internet as much as other people. We wanted to find out what people without learning disabilities believe about these good and bad things for people with learning disabilities. We wanted to find this out because the way people without disabilities think about the good and bad things online might affect how people with learning disabilities are treated. We found out that people without learning disabilities think that both the good and bad things are more likely to happen to people with learning disabilities when they use the Internet. Abstract Background: Information and communication technologies, with the Internet at the forefront, have the potential to enhance the knowledge, service, employment, development and social interactional opportunities available to people with intellectual disabilities. Despite this, people with intellectual disabilities are not accessing the Internet to the same degree as people without intellectual disabilities. Issues of safety, risk and protection online for people with intellectual disabilities have yet to be adequately investigated, and these currently serve as reasons given for hindering people from gaining online access. Materials and Method: This survey aimed to gauge the views people without intellectual disabilities have of risks and benefits of using the Internet for themselves and for people with intellectual disabilities and to compare self-ratings of risk and benefits to ratings for people with intellectual disabilities. Results: The survey findings indicate that, with only a small number of exceptions, both the risks and benefits of being online were believed to be greater for people with intellectual disabilities compared with those without intellectual disabilities. Greater use of the Internet was associated with increased perception of benefits to being online for both people with intellectual disabilities and for participants. Conclusions: Perceptions of increased benefits suggest more needs to be performed to improve online access whilst a perception of increased risk may help to explain the reduced inclusion of people with intellectual disabilities in the online world.

Background: This paper reports quantitative and qualitative follow‐up data from three participants who attended a Dialectical Behaviour Therapy (DBT) group for people with an intellectual disability.Materials and Methods: Quantitative data regarding psychological well‐being, psychological distress (measured using the Psychological Therapies Outcome Scales; PTOS) and quality of life (measured using the Health of the Nation Outcome Scales—Learning Disability; HONOS‐LD) are reported for pre‐group, post‐group and at 6‐month and 2‐year follow‐up. Interviews were conducted with participants post‐group and at 2‐year follow‐up. Data were analysed using thematic analysis.Results: Improvements in scores on measures of psychological well‐being, psychological distress and quality of life appear to be maintained at 6‐month follow‐up, but scores at 2‐year follow‐up suggest a return to baseline. Qualitative self‐report data suggest a number of interesting ways participants adapted and individualised techniques from the group, as well as suggesting possible barriers to maintaining change in the longer term.Conclusions: Clinical implications are considered to improve effectiveness of similar interventions, as well research implications in order to improve knowledge about the longer term impact of group DBT interventions.

Accessible Summary Pathologic aerophagia is a rare but important medical condition that occur more frequently in people with intellectual disabilities. It is characterised by repeated air swallowing resulting in progressive abdominal distension and flatulence, and sometimes it can cause serious and life-threatening complications. Here, we present a literature on diagnosis and management of pathologic aerophagia and describe presentation of this condition in a 23-year-old male diagnosed with severe intellectual disability and autism. Abstract Background: Pathologic aerophagia (PA) is characterised by excessive swallowing of air resulting in significant abdominal distension or belching. This is a relatively rare condition in general population but has been reported in up to 8.8% of institutionalised patients with intellectual disability. In severe cases, this can cause volvulus and ileus, and even intestinal perforation. Currently, there is limited information on this potentially life-threatening condition, particularly for people with intellectual disability. In this study, we aim to present a literature of diagnosis and management of PA and describe a case of PA in an adult with intellectual disability and autism. Methods: A literature search of electronic database was performed using specific keywords. Results: Apart from a few small controlled trials on pharmacotherapy, most of the studies were case series or uncontrolled studies. The understanding on pathophysiology is incomplete but is thought to involve a reflex-induced movement of upper oesophageal sphincter and may be associated with anxiety or stress. A comprehensive history and physical examination as well as an abdominal radiograph may be helpful in diagnosis. Medications that are helpful include antacids, anti-reflux drugs and benzodiazepines. Surgical treatment may be required in severe cases. A case of an adult patient with intellectual disability and PA is discussed to highlight the challenges in diagnosis and management. Conclusions: PA is not uncommon in people with intellectual disability and can pose challenges in the assessment and management. Further studies are necessary to provide evidence-based treatment guidelines for the management of this condition particularly in patients with intellectual disability.

Accessible summary People with Down syndrome and intellectual disabilities are more likely to get dementia when they are older. This is an illness where people become forgetful and confused. Sometimes people with Down syndrome start to behave strangely at the start of the illness. They have difficulties solving problems or have changes in their behaviour. This is called executive functioning. We looked at some different tests to see whether they could help us understand whether someone was having problems with their executive functioning skills. We found that the tests can be useful and that we should be using them with more people. We think that we need to wait for a longer time before finding out whether they can tell us whether someone has dementia or not. This is important for people with intellectual disabilities as we need to find the right tests to help us diagnose dementia as early as possible. Summary The following article details a piece of service development work undertaken as part of the Plymouth Down Syndrome Screening Programme. The work aimed to review the use of three measures assessing executive functioning skills used within the Programme as well as with people without Down syndrome. Three tasks assessing executive functioning (the Weigl, Cats and Dogs, and verbal fluency task) were evaluated. The Weigl task was removed from the Programme and analyses due to floor effects and difficulties in administration. Correlation analyses showed relationships between the Cats and Dogs task and two other measures, cognitive skills as reported by carers and object memory. No relationships were found between the verbal fluency task and other measures. A full consideration is given to these findings, and implications for future practice are considered. Further data are needed to make full conclusions about the value of the tasks in predicting dementia in people with intellectual disabilities and people with Down syndrome. Further recommendations concerning the development of the assessment of executive skills are also considered.

Accessible summary This research aimed to find out how people with intellectual disabilities are treated by the public, from the viewpoint of people with intellectual disabilities. A total of seven focus groups were used to collect stories from 41 adults with intellectual disabilities attending one agency in Dublin. The stories were about how they have been treated in everyday life. The findings show that some people have been treated very well, but many other people have not been treated well. Summary Attitudes towards people with intellectual disabilities have traditionally been very negative, resulting in people with intellectual disabilities being treated badly by other. This claim was explored by conducting focus groups with adults who have an intellectual disability to find out about their everyday experiences in different places and using different services. Participants reported being treated well by some people and in some places, but being treated less favourably by other people and in other places. Being treated well happened in their home, in college, in work and in their services. People were treated less well when they were out and about, using public transport, in school or work.

Accessible summary • People with intellectual disability have often been involved in research, but not in the analysis of data. • One reason might be that not many people with intellectual disability have received training in research. • This paper describes a project in Austria. In this project, we have looked at the experiences of people with intellectual disability during transition from school to work and in working life. • We have collected their life stories over a period of 2 years. • To assist with the analysis, we have formed a reference group. • In this group, twelve people with intellectual disability look and make sense of the life stories together with the non-disabled researchers. • We think that this helps the project to become more aware of things that are important to people with intellectual disabilities. • This is because researchers with disabilities have the insider perspective. They know how it is to live with an intellectual disability • In this paper, I show the life story of a woman who tries to hide her intellectual disability. • I show how the reference group has worked with the life story and what they found out. Summary Despite considerable achievement in inclusive research, people with intellectual disabilities have been largely excluded from the critical area of data analysis and theory development. Next to the undoubted complexity of these tasks, this can partly be attributed to higher demands of representativeness that are used to judge the validity of disability research as well as missing training opportunities for people with intellectual disabilities. The paper presents data from the first core research project in German-speaking countries that was carried out within an inclusive framework. Within the FWF (Austrian Science Fund) financed project ‘Experiences of participation in the (vocational) biography of people with intellectual disability’ at the Department of Education at the University of Vienna, the research team aimed at involving people with intellectual disability in an accompanying reference group in the process of co-construction of theory through the shared analysis of the collected qualitative data: life stories and narratives of people with intellectual disability. This paper seeks out to show the added value of this approach both methodologically and practically.

Accessible summary • People with intellectual disabilities are living for longer than ever before and are experiencing the deaths of their friends and other service users. • This study describes the experiences of people with intellectual disabilities who have lived through the death of a friend or service user from the point of view of staff from intellectual disability and palliative care services. • It is important to understand the experiences of people with intellectual disabilities to try and help people cope with the deaths of their friends. • The study shows that it helps to include people with intellectual disabilities when their friends become unwell and to talk openly with them about what is happening. Summary Research is lacking on the effect of the deaths of fellow service users on people with intellectual disabilities. This qualitative study formed part of a project which aimed to describe the provision of palliative care to people with intellectual disabilities in Ireland and to assess the population’s palliative care needs. We report on findings from 16 focus groups held with staff in which participants described their perception of the experiences of people with intellectual disabilities when other service users die. Interviews were analysed using Framework Analysis. The findings highlight the emotional impact of the death of a friend on people with intellectual disabilities. Situations where staff facilitated the involvement of services users are described, and the study points to the benefits of this approach. Possible barriers to involvement are highlighted. The findings affirm the importance of ensuring that people with intellectual disabilities have a good understanding of the concept of death to alleviate the bereavement experience.

Accessible summary • People with intellectual disabilities are still not being listened to by services. • When upset, people with intellectual disabilities are often seen as mentally ill. • This paper describes a procedure [repertory grid] for understanding how people with intellectual disabilities make sense of their experiences. Summary Many people with intellectual disabilities are still not being listened to by the services providing them with care and support, and when they become upset and frustrated, they are all too readily regarded as being mentally ill. To help people with intellectual disabilities describe and make sense of their experiences and feelings in a non-judgemental manner, and without the need for these experiences to be interpreted and explained, this paper describes the use of an adapted repertory grid procedure developed from George Kelley’s personal construct psychology. Although such an approach has been identified as being particularly suitable for working with people with intellectual disabilities in a person-centred manner, little information has been presented and to remedy this, this paper presents an outline of PCP, its application with people with intellectual disabilities and two case reports to illustrate its use in clinical practice.

Accessible summary • In Europe many children are living in lone parent households. These families often require extra support. • This study used information from a national database of people with intellectual disabilities for the years 1996, 2001 and 2006. • We found that there are now many more lone parents, particularly for children and young people under 20 years of age, who have intellectual disabilities. This rise is also found amongst parents whose children do not have intellectual disabilities. • People with intellectual disabilities are still less likely to have a lone parent than people who do not have intellectual disabilities. • More research should be done on the needs of lone parents. Summary The National Intellectual Disability Database that operates in the Republic of Ireland is unique in Europe and provides an opportunity to examine trends over time for a total population in excess of 25 000 people with intellectual disabilities and their care arrangements. This paper describes the changes over a 10-year period in the proportion of children and adults living with lone parent carers and comparisons are drawn with demographic changes as reflected in the national census of 2001 and 2006. Since 1996, the proportion of children and young people under 20 years of age with intellectual disabilities living with lone parents has doubled: in 2006 nearly one-in-five were in lone parent households. These figures are lower than for the general population although they reflect similar demographic trends. The increase in lone parenting is more marked amongst people who have mild rather than moderate to profound intellectual disabilities and for those families living outside the Greater Dublin area. The implications for providing equitable and supportive family-centred services to this population of parent carers are discussed.

i?½ Older people with intellectual disabilities have been telling their life-stories in Ireland. – People remember being taken away from their family and community. People talk about sad memories of times in institutions. – People talk about the kindness of friends and family. – These stories tell staff that older people want to talk about their past and need help to do this. Doing life-story work will help staff to find out what older people who are in services in Ireland need to make their lives meaningful and comfortable. This article draws on life-stories told by older people with intellectual disabilities for a research study in the Republic of Ireland. Research participants recalled their experiences of confinement, coercion and exclusion that resulted from their being labelled as having intellectual disabilities. Participants also recalled the positive interactions with workers and family members that sustained them during these difficult times. Extracts from these narratives show how past medical and social processes interlinked to classify members of this group as 'deficient' or 'lacking' in some way. Life-stories collected in this project illustrate the value of a narrative approach to exploring how services might begin to enhance the quality of support currently provided to older people with intellectual disabilities. However, life-story work in a service setting is far from straightforward, and support is needed for staff involved in this process.

Accessible summary • Most adults with intellectual disabilities in Ireland live with their parents. • In this research some parents worked with us as researchers. We called them co-researchers. • They talked with groups of other parents about what life is like for them and how well services support them. • The co-researchers learnt new skills, and have started to talk with service providers about how they can support families better. Summary This paper evaluates a participatory action research (PAR) approach to conducting family research in Ireland. Drawing on PAR methodology it describes how parents of people with intellectual disabilities were recruited and trained to facilitate focus groups of parents in Ireland, in order to create an evidence base to support improved dialogue between parents and service providers. Its findings are that a PAR approach has considerable potential to contribute to improved understanding of the realities of family life with an adult with intellectual disabilities, particularly if plans to create a dialogue with service providers and to build sustainable networks of parents are included in the project.

This paper demonstrates the effectiveness of the multi-element behaviour support (MEBS) model in meeting the rights of persons with intellectual disabilities and behaviours that challenge. It does this through explicitly linking the multi-element model to the guiding principles of a human rights based approach (HRBA) using a vignette to demonstrate the link. The guiding principles of a HRBA are express link to rights, participation, empowerment, nondiscrimination and accountability. The background assessment and functional assessment phase of the MEBS process enables the identification of rights infringements while the MEBS plan addresses those rights. The accountability tool in the MEBS model, which is the periodic service review, is then used as a measure of implementation of the MEBS plan and consequently the enabling of rights. Implications in relation to the rights of those supporting persons in receipt of MEBS and those living with the person receiving MEBS are also highlighted: 'In each situation we confront, a rights based approach requires us to ask: What is the content of the right? Who are the rights claim-holders? Who are the corresponding duty-bearers? Are claim holders and duty bearers able to claim their rights and fulfil them? If not how can we help them to do so? This is the heart of a human rights based approach.' (Robinson 2003:1)

The COVID-19 pandemic has placed enormous strain on health systems around the world, undermining the mental health and wellbeing of healthcare workers. Supporting people with intellectual disabilities may be particularly challenging for workers, as some people with intellectual disabilities may have a limited understanding of the pandemic, and find it challenging to adhere to the restrictions imposed by public health guidelines such as social distancing, lockdowns and change in usual routine and activities. In addition, many people with intellectual disabilities have increased vulnerability to more negative effects of COVID-19, with significantly higher mortality rates. Although there is emerging research on the mental health of healthcare staff during this time, there has been little specific work on the mental health of staff working with people with intellectual disability, particularly a lack of qualitative research.The current study employed semi-structured interviews with 13 healthcare workers (12 women and 1 man) who were working with people with intellectual disability during the COVID-19 pandemic. The interview data were analysed using thematic content analysis.The participants spoke in depth about the challenges of the working environment, the impact of providing care during the pandemic on staff mental health, supporting staff mental health and wellbeing and learning for the future.Systematic efforts are required to protect the mental health of this staff cohort, as well as encouraging resilience and successful coping among staff themselves.

Accessible Summary The NHS Constitution states that all patients should have opportunity to take part in approved research This study asked clinical researchers how they include people with intellectual disabilities and/or autism in research Many barriers were identified that relate to making mental capacity judgements Many researchers agreed new resources that support consent and capacity judgements for research would be helpful and gave some ideas about what could help . AbstractBackground Adults with intellectual disabilities and/or autism are often excluded from participating in health and healthcare research. Understanding study information, which is an important aspect of demonstrating capacity to give informed consent, can be a particular challenge. This study surveyed clinical researchers to discover: (i) their experiences of assessing mental capacity for research; (ii) what methods they used to facilitate the inclusion of adults with intellectual disabilities and/or autism; and (iii) their views about a proposal to develop new resources to facilitate mental capacity judgements with adults with intellectual disabilities and/or autism for informed consent for research. Methods Clinical researchers in North East England who conduct research with NHS patients with intellectual disabilities and/or autism were invited to participate in a 22-item self-completed semi-structured questionnaire survey, either online or on paper. Results Twenty-one clinicians completed the survey (response rate 30.4%). Participants reported on 18 research studies which included people with intellectual disabilities and/or autism. In many studies people who lacked capacity to give informed consent were excluded, and often shortcuts were taken in judging capacity. Limited adaptations to support capacity were used. Respondents welcomed the proposal of developing assistive resources that could support capacity judgements and informed consent to research. Conclusions To improve access to research for people with intellectual disabilities and/or autism, researchers need robust methods to facilitate informed consent and mental capacity judgements. Future research should determine which assistive resources show potential to support informed consent and capacity decisions, and whether such resources could improve inclusion in research.

Accessible summary Going online is important because we can learn, meet people and get information. But some actions by others or by ourselves can be harmful. We wanted to find out how people with intellectual disabilities in Spain go online and the problems they have using the Web. We asked 77 adults with intellectual disabilities and 68 caregivers to answer questions about how people with intellectual disabilities use the Web. We found that people with intellectual disabilities prefer smartphones to go online and that they listen to music, watch videos or chat with friends online. We also found out that sometimes they have problems such as receiving insults or being blocked. AbstractBackground Internet offers opportunities to people with intellectual disabilities, but it also involves some risks. The aim of this study was to explore these issues considering caregivers and people with intellectual disabilities’ perspectives. Materials and Methods A descriptive, cross-sectional study was conducted. The sample consisted of 77 adults with intellectual disabilities and 68 caregivers from a Spanish service provider organisation. Results Compared to previous research, findings show an increasing use of electronic devices such as smartphones and the Internet by people with intellectual disabilities. Some online risks (e.g., being insulted, being threatened, someone using their personal information) and undesirable behaviours of this group (e.g., insulting, threatening or flirting with someone who did not want to) were also identified. Differences between the responses of people with intellectual disabilities and their caregivers were found with regard to people with intellectual disabilities’ online behaviour. Conclusions It is important to design, validate and implement strategies to promote risk management and positive risk-taking actions for people with intellectual disabilities.

Accessible summary Siblings often play important roles in the lives of people with intellectual disabilities. This study suggests that young adults who have siblings in residential care can feel isolated in their experience. Adolescence appears to be a turning point and a time when siblings become aware of future caretaking responsibilities. There is a need for support for siblings of children and adults with intellectual disabilities who live in residential care. Abstract Background: Siblings often play significant roles in the lives of people with intellectual disabilities. This study aimed to give voice to young adults whose siblings have an intellectual disability and are in residential care. Materials and Methods: Six participants were interviewed, with interpretative phenomenological analysis methodology employed. Results: Emergent themes included family and sibling relationships and concerns for the future. However, ambivalence, in terms of conflicting feelings within participants themselves, was striking. Dissonances within narratives included identifying as ‘one family’ whilst living apart, experiencing guilt while being supportive of the residential placement, and emphasising the normality of the sibling experience whilst also feeling different and isolated. Conclusion: These findings reflect the particular complexity of sibling relationships when the person with an intellectual disability lives in residential care. There is a need to understand more about the perspectives of siblings, and the influence that residential care may have upon these.

Accessible summary This paper is a summary of research on the support people with disabilities get from their friends and family. The research is mostly about people with intellectual disabilities, but there is also some research on people with other disabilities. The main findings in the research are as follows: People with intellectual disabilities have small groups of supporters. These supporters are family, friends with intellectual disability and people who work in services. People with disabilities say that services could provide more support for making and keeping friends. There are projects that have helped people with disabilities make friends and be a part of their community. More research is needed on these projects. Policy makers, services and other people who deliver services should put more efforts into supporting people with disabilities to make friends in their community. Summary The purpose of this review was to identify the available evidence base on role of natural supports in promoting independent living for people with disabilities. A search of peer-reviewed literature identified 30 core papers and 16 contextual papers which addressed issues relating to natural supports and their role in facilitating independent living. The papers reveal that the evidence base is limited and focuses heavily on the social networks of people with intellectual disabilities, which typically comprise family, other people with disabilities using services and staff members. People with disabilities themselves call for greater support in establishing and maintaining social relationships in the community. Some initiatives such as peer-based support and befriending schemes are reviewed, mindful that few have been formally evaluated. The issue for policy makers is whether, following decades of deinstitutionalisation, efforts to physically locate people with disabilities within their local communities have come at the price of social inclusion.

Accessible summary A national survey of over 1000 people took place in Ireland in 2001, 2006 and again in 2011. In 2011, half the people in the survey thought that people with intellectual disability or autism had the right to sexual relationships. In 2011, one-third agreed that people with intellectual disability or autism should have children if they wished. People's attitudes towards people with intellectual disabilities were similar to their attitudes towards people with mental illness. More people in the survey agreed that people with physical or sensory disabilities had the right to have sexual relationships and have children compared with people with intellectual disability. People in the survey were more likely to agree with the right to sexual relationships for people with intellectual disabilities if they: ○ lived outside of Dublin; ○ were single; ○ had more people in their own social networks; ○ were comfortable living near people with intellectual disability. People need to know more about what people with intellectual disabilities hope for from relationships. People need to know more about the supports that are in place: ○ to help people with intellectual disabilities make choices about sexual relationships ○ to protect people with intellectual disabilities against abuse. Summary Limited progress has been made in supporting people with intellectual disabilities to form intimate relationships. A critical factor that has been rarely researched is the attitude of the general public which likely has a significant influence on public policy on this issue. Unique to Ireland, are the five-yearly national surveys commissioned by the National Disability Authority that recruit representative samples of over 1000 adult persons. On three occasions in the past 10 years, respondents were asked to rate their agreement that people with various disabilities and with mental health difficulties had the right to fulfilment through sexual relationships and to have children if they wished. Secondary analysis of the 2011 data set identified those persons who were more likely to be in agreement and also the concerns raised by respondents. The findings are discussed in relation to priorities for future research and actions needed to reduce the stigma associated with disability or mental ill health.

Accessible Summary This is the second time that the British Journal of Learning Disabilities is publishing a special issue focused in Ireland. Intellectual Disability Studies at University of Limerick (IDS@UL), the National Institute for Intellectual Disability, the Inclusive Research Network and the Centre for Disability Law and Policy have worked together on this special issue. We present recent work about intellectual disability done in the Republic of Ireland focused on four important topics: ○ Rights ○ Professional work and services ○ Health and well-being ○ Inclusive research Many people wrote pieces for this issue: ○ People with intellectual disabilities created poems and shared their experiences in interviews. ○ Academics sent in research papers about rights, relationships, support, sexuality. ○ Professionals wrote about their work in education, health and services. ○ Students reviewed two books about people with intellectual disability. The Convention on the Rights of Persons with Disabilities is central to all of the work in this issue. We encourage readers to think about how the Convention can be used to improve policies and support services that affect the lives of people with intellectual disabilities.

Accessible summary •Self-Directed Support is the latest system of social care giving vulnerable people in the UK a budget instead of a service provided by local authorities. •There is a lack of evidence to demonstrate how people with intellectual disabilities access information and make choices about Self-Directed Support. •Self-Directed Support is not yet available to all individuals with an intellectual disability. •There is a need for further education and training for professionals and support staff to ensure that people who have intellectual disabilities are assisted to make informed choices about care provision. Summary A systematic literature review was conducted between September 2010 and April 2011 and published earlier in this journal, paper 1. The findings indicated that few studies of Self-Directed Support focused specifically on people with intellectual disabilities. The range of individuals' ability and distinction between adults with or without legal capacity have not been addressed. It is clear that Self-Directed Support is not, as yet, a viable option for all individuals with an intellectual disability. However, some who have accessed it reported an improvement in their quality of life. For Self-Directed Support to succeed for people with a wide range of intellectual disabilities, the level of awareness of its existence, and the potential barriers in relation to uptake, must be identified and addressed. This paper suggests possible strategies to maximise access to Self-Directed Support and identifies areas in which further research is required.

Accessible summary We wanted to show how we try to give the voice of persons with learning disabilities. We have used video as the means by which we can collect and show what people with intellectual disabilities say. We learnt • Video is a tool that offers persons with learning difficulties the opportunity to express their experiences. • Video can help make people with intellectual disabilities more visible and can help us listen to what they have to say. Summary Our work, based on two pieces of research, aims to show how we try to get the voice of persons with learning disabilities. In both pieces of work, the second of which is still under progress, we have used video as the means by which we can collect and show what people are saying in the context and situation in which they find themselves. As we seek to defend, the video is a tool that can help make certain people more visible (as well as those with learning disabilities) and can help us listen to what they have to say, broadening our knowledge as to the circumstances in which they find themselves or the kinds of relationships we establish with them.