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People with learning disabilities are living longer. Older people with learning disabilities should be included in policies and plans that are for all older people. National plans and policies for older people often do not say anything about older people with learning disabilities, and it is hard to know whether older people with learning disabilities are benefiting. People who plan services locally often do not have good information on older people with learning disabilities. Using the Equalities Act 2010 could help people who plan services and write policy to think about older people with learning disabilities but this is not happening at the moment. People who work with older people with learning disabilities should be aware of policy for all older people, so that older people with learning disabilities do not miss out. This paper seeks to explore the opportunities and challenges generated by current policy, guidance and legislation in England relating to older people, in terms of the practical implications for older people with learning disabilities. Using the broad themes housing, employment, social inclusion and isolation, care and support, and promoting better health and well-being, this paper discusses potential practical opportunities and concerns for older people with learning disabilities arising from policy and legislation such as current initiatives regarding integration, personalisation and the dementia policy. Consideration is given to the implications of changing policy and practice for both current and future generations of people with a learning disability as they reach older age. This discussion paper concludes that whilst there is potential for older people with a learning disability to benefit from policy and practice aimed at improving the lives of older people generally, the tendency for policy to be targeted at specific groups without adequately considering the diversity of those groups often leaves those with a learning disability at the margins of being able to make the most of changes. [ABSTRACT FROM AUTHOR]

UK social care policy has "traditionally" sought to minimise organisational and sector boundaries through cooperation and partnership. This discussion paper argues that there is a case for a social care system based openly on separation of powers to address the conflicts of interest that inevitably exist between the actors—notably local authorities and service providers. Such systems, with "guardrails" to separate the actors, and "checks and balances" to keep them stable, have been developed over centuries in other spheres. Furthermore, if disabled people are to be considered as participants with rights, rather than mere recipients, they should be recognised as the third main actor in the system, also with powers that are protected and constrained. This paper takes a 50‐year retrospective view of these issues in terms of policy affecting people with learning disabilities, focusing on three policy episodes in the UK. First, the 1970s, with a system unbalanced by powerful medical professions, and an absence of self‐advocacy. Second, care management in the 1990s, which ducked the spirit of Sir Roy Griffiths' vision of a lively provider market. Third, the adoption and degradation of Personal Budgets. The learning from UK and international individualised funding programmes is too complex to be certain which ingredients are the keys to success. However, there are strong arguments, and substantial evidence, to suggest that Personal Budgets will not truly succeed until they are built on a structure that determines not only what councils and providers can and should do but also where they must not interfere. Accessible summary: •It is a nice idea that everyone involved in social care—the council, the service providers and people with learning disabilities—all want the same thing. If that is true, then they all need to work together as closely as they can.•But it is not really true. Council staff who do assessments and people who run services see things from different viewpoints. A person who wants support services will see things another way. That does not mean that anyone is a bad person, and a lot of the time they will want the same thing. But we are all human, and sometimes we pretend we are doing what we should do, when actually it is what suits us.•If you need a Personal Budget, the council may try to say you do not need much support, because that will save money. The support provider may want to tell you when you will get support, because it makes life easier for them, not you.•So maybe we should be more honest, and organise the system so that people have the power to do their job, but do not have the power to interfere when they should not. Disabled people should be part of this system, so that they have some power as well. [ABSTRACT FROM AUTHOR]

The authors responds to a comment on their paper "Decommissioning Normal: COVID-19 As a Disruptor of School Norms for Young People With Learning Disabilities" that is published within the issue. Topics covered include the ways on how the Glasgow Disability Alliance (GDA) managed to help people with learning disabilities during the pandemic, and their agreement with the comment that changes should be made to services for children with learning disabilities.

Background: The advantages of including people with learning disabilities in research teams have been well described, but it is rare for researchers with learning disabilities to be employed at a university. This paper explores the extent to which university recruitment procedures are accessible to job applicants with learning disabilities. Methods: We present reflections on the process of recruiting a Research Assistant with a learning disability onto a university research team. The recruitment process is described from the perspectives of the employee, line manager and Human Resources representative. Findings: The recruiting manager and Human Resources representative had to make adjustments to a wide range of standard processes, including centralised online recruitment systems that were difficult to navigate, inaccessible job descriptions and difficult application forms. Finding workarounds to ensure reasonable adjustments were made was time‐consuming. The employee needed significant support from within his own networks to cope with the application process and had concerns about the potential impact of fixed‐term job contracts on future benefits. Despite our efforts, procedures remained difficult for the applicants to navigate. Conclusions: Employing researchers with learning disabilities is important. Fundamental changes to job application systems are required, including easy‐to‐understand information, alternative formats of application forms, and support available where needed. Flexibility from the Human Resources departments is key. They will need support from teams with experience working with people with learning disabilities. Accessible summary: It is important that people with learning disabilities are involved in research, but not many people with learning disabilities have a job at a university as part of the research team.We can learn from examples where people with learning disabilities applied for a university job. One example is Richard Keagan‐Bull, who got a job as a Research Assistant at Kingston and St George's University of London.What was it like to advertise for the job, apply for the job, and get the job? In this article, three people talk about this: Richard (who got the job), Irene (his manager) and Maria (who sorts out the paperwork and computer systems at the university).They found that the university's systems for finding and employing new staff were too complicated for people with learning disabilities. They had to make many changes to it, such as writing an easy‐read job advert and asking easier questions on the application form.This all took a lot of time. Irene and Maria made things easier but didn't always get it right. Richard still found it all quite complicated. They wrote this article because they want other universities to learn from their mistakes. They hope that more universities will employ researchers with learning disabilities.People might lose their benefits when they start a job. Research jobs at universities are usually only for a short time (1 or 2 years). It can be hard and stressful to get back onto benefits. This may put people off doing these jobs.You can see an easy‐read version of this paper in Supporting Information Appendix 4. [ABSTRACT FROM AUTHOR]

Accessible Summary: Two young men who have learning disabilities were students at a college. While they were there, they were sexually abused by people who were meant to care for them.When they tried to tell people, some people would not listen. Some people listened but could not understand them.They became mentally ill because of the abuse. Then, some people started to listen and help them tell their stories. Then, the police and the courts said that the two young men could not give evidence in court because of their learning disabilities.This paper matters because it writes about ways to protect people with learning disabilities from people who abuse them. We need to try and help people who have been abused to tell their stories. We need to make sure those stories are listened to. Two young men disclosed emotional, sexual and physical abuse while attending college and living with Shared Lives carers in the UK. This paper provides a narrative account of the period when the two men were exposed to the abuse, the disclosures, the investigation and the legal and safeguarding investigation outcomes. A second paper describes the therapeutic response and outcomes for the men. A review of the literature on abuse and learning disabilities highlights the difficulties in conducting research in this area. Authors find significant barriers exist to disclosing abuse and to being believed. Prosecutions are rare despite evidence that abuse may be widespread towards people with learning disabilities. This paper considers the narrative experience of the two young men, the barriers they faced to being heard and believed and how their personal accounts were discounted and eventually lost to the investigation. Lessons for practice are considered for learning disability mental health and social care professionals, education, police and legal services. Further research suggestions are made. [ABSTRACT FROM AUTHOR]

The article describes the process of recruiting a researcher with a learning disability at a United Kingdom (UK) university. Topics discussed include how the editors choose the paper, the job application process, and how the team works together. The support needed by people with learning disabilities when they apply for a job is also mentioned.

Accessible summary: Music is often part of our lives.We asked parents what music is like for children and young people with profound learning disabilities at home.People listened to music more than they made music at home.Music is used for different reasons.Music can help families feel more connected. ​ Background: Music is weaved within our cultures; it is ever‐present within daily‐life and can considerably influence our mood, well‐being and relationships. This study explores parental perceptions of the role of music in the home‐lives of children and young people with profound and multiple learning disabilities in the UK. It considers parental views of how listening to and making music can shape the mood and behaviours of their child and their relationship. Methods: Using a mixed‐method explanatory sequential design and cross‐sectional survey methodology, the study collected data from parents and carers of children and young people with profound and multiple learning disabilities. Data were collected from an online questionnaire (n = 48) followed by online one‐to‐one interviews (n = 10). Findings: Parents reported that children and young people with profound and multiple learning disabilities more frequently listen to music than make music within the home. They also stated that music is used for enjoyment, to support mood‐regulation and to add structure to the lives of young people with profound and multiple learning disabilities. Parents finally reported that listening to music together helps families feel more connected and strengthened their relationships. Conclusion: This paper outlines the positive role music may have in the home lives of people with profound and multiple learning disabilities and their families. [ABSTRACT FROM AUTHOR]

Accessible summary: A supported internship is a work placement for people with disabilities that includes spending some time at work and some time at school or college. It usually lasts for a year and people get extra support in the work placement.We wanted to find out how supported internships for people with learning disabilities helped them to feel like they belong in workplaces and society.We found that the supported internships we studied did help people with learning disabilities to feel like they belong. The interns developed self‐confidence, they were able to talk to people more easily, and they learned that they were good at things. This was because the people they worked with saw them as individuals who were able to do helpful things. It was also because of the feedback they got at work and how they worked in different departments.We think there should be more supported internships because they help people with learning disabilities to take the next step in life more confidently. Researchers need to find out more about how supported internships can help people to be socially included. Background: Obtaining employment for young people with learning disabilities remains challenging, and people may not be able to experience work that offers them the opportunity for broader and deeper social inclusion. Supported internships (SIs) offer a possible solution to this problem, providing a bespoke, structured study programme designed for students with disabilities. Methods: This paper explores, through an ecological systems approach, the experiences of three graduates, six interns, two job coaches and three colleagues, from a long running SI in a large private‐sector organisation that delivers utilities in the midlands in the UK. The organisation has many different departments and interns work in several of these, including the mailroom, reprographics, catering, health and safety, reception, and customer services. The researchers conducted small focus groups and interviews with the participants described above. Findings: Thematic analysis identified three core phenomena of relevance to understanding the relationship between the SI programme and interns' experience of deepened and broadened social inclusion. The first theme illustrated positive changes to interns' and graduates' self‐concept (e.g. self‐determination) and participation, the second captured accounts of reciprocity in relationships, and the third contained insights into the SI practices that were relevant to improved social inclusion. Conclusions: The SI did lead to the broadening and deepening of social inclusion for interns and graduates. The person‐centred ethos of the SI, personalised approaches to workplace adaption and feedback policies were practices that began to emerge as implicated in this impact. Positive developments to self‐concept emerged as important in building interns' and graduates' capacities for participation. The study also demonstrated that an ecological systems approach is useful as a basis for conceptualising and investigating changes to the amount and quality of social inclusion, as experienced by people with learning disabilities. [ABSTRACT FROM AUTHOR]

Accessible Summary: This paper shows what people with learning disabilities can get out of enjoying books and reading even when they cannot read words easily.The writers think about how people with learning disabilities can be helped to enjoy books. They say that this can happen through reading with other people, enjoying lots of activities about books and making books part of their daily routine.The writers also think about the way that books and stories help us to learn about the world and the people in it.The writers are annoyed about the way that enjoyment of books by people with learning disabilities has been ignored by people.This matters to people with learning difficulties because enjoying books, even when we cannot read words easily, can give us good feelings and help us to learn and develop. This paper presents the findings of an original research project commissioned by BookTrust, a respected UK charity that gifts books to children, young people (CYP) and their families. It explored the impact and modus of pleasurable engagement with books among CYP with severe and profound learning disabilities and applied a critical, phenomenological stance on what it means to read through drawing on "inclusive literacy" as a conceptual framework. Data were collected from four local areas in England and included 43 CYP aged 4–14. In keeping with a phenomenological stance, it employed interpretivist methods involving 13 deep‐level interviews with families to include observations and structured play; 13 observations of CYP sharing books with others in home, play or school settings, and interviews with 27 practitioners working in a range of organisations (e.g., Portage service and advisory teams). Findings were that books had a positive impact on well‐being, social inclusion and development. CYP were engaged in enjoying the content of books through personalisation, sensory stimulation, social stimulation and repetition. This affirmed the theoretical and practical approaches espoused by "inclusive literacy" but made a critical and original contribution to our understanding of the special place that books occupy as ordinary artefacts of literary citizenship among this cohort. The benefits of volitional reading among CYP who do not have learning disabilities are well known, but the authors urge publishers and policymakers to recognise CYP with severe and profound learning disabilities as equally important, active consumers of books who have much to gain from reading for pleasure. [ABSTRACT FROM AUTHOR]

An introduction to the journal is presented that focuses on issues related to people with learning disabilities, including experiences of people with intellectual disabilities in Ireland when moving home using an inclusive research approach, whether communication partners of children and adults with developmental disabilities in Australia can learn and retain a basic Key Word Skills vocabulary, and attitudes amongst British support staff towards sexuality and adults with learning disabilities.

People are living longer, and policymakers are talking about 'active ageing'. Active ageing can mean older people being still physically active, still working and still being involved in their local communities. Most policy makers do not talk about people with learning disabilities and active ageing, but this paper does. We also say that people with learning disabilities should be involved in inclusive active ageing research. People (with and without learning disabilities) are living longer. Demographic ageing creates challenges and the leading policy response to these challenges is 'active ageing'. 'Active' does not just refer to the ability to be physically and economically active, but also includes ongoing social and civic engagement in the communities of which older people are a part. Active ageing should apply to all citizens, including the experiences of older people with learning disabilities. This literature based paper explores the focus of active ageing discussions in relation to the general population drawing comparisons with the experiences of older people with learning disabilities. It points out that older people with learning disabilities and their experiences are largely missing from broader policy discussions of active ageing. The paper concludes by arguing for inclusive research in active ageing which takes account of the concerns and interests of older people with learning disabilities. [ABSTRACT FROM AUTHOR]

An introduction is provided which discusses articles within the issue on the theme of citizenship, vulnerability, representation and consent for people with learning disabilities.

Accessible summary The governments in the UK want people with learning disabilities to have a voice about what happens in their own life and also in policy., One way of doing this is through research. This paper looks at two inclusive research projects, which were about people using direct payments and personal assistants. The projects both employed people with learning disabilities., Each of these projects made a training pack from the research, so that they would help people with learning disabilities and their supporters. They also had some effects in ways that were not planned, because the government wanted to learn from them about inclusive research., All research seems to have most effect when there are many voices seeking change, including those of policy makers themselves., Inclusive research is a way of achieving 'choice and control'. But just like with direct payments and personal budgets, the best way in these projects was to have good support from other people who will listen to you, and help you decide things for yourself., Summary Participation, voice and control have long been central concerns in the research at Norah Fry. This paper focuses on inclusive research relating to choice and control, as experienced by people with learning disabilities who use personal budgets and direct payments, and aims to question how the process of inclusive research can be linked to wider outcomes. The paper gives a brief overview of two studies carried out by Norah Fry Research Centre, which were in partnership with self-advocacy groups and employed people with learning disabilities, between 1999 and 2007. Both in research and in everyday life, we question individual notions of 'choice and control', showing how relational autonomy was at the heart, both of the process of the inclusive research and also of the outcomes and findings. However, all social research seems to have greatest impact when there is a 'bandwagon effect' of policy and practice initiatives. The discussion considers how the impact of inclusive research designs can be at policy, practice and 'direct' user level and is often achieved by people with learning disabilities having a voice at the dissemination stage. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

An introduction is presented in which the editor discusses articles in the issue on topics including the health risk of children with Down syndrome, the benefits of regular physical activity, and foot care.

Accessible summary: Children with learning disabilities often have problems with their eyesight.We tested the eyes of nine children and checked whether they needed glasses or bigger print.We found that when they got what they needed to see better, their behaviour improved.This is important because children with learning disabilities need to be able to see as well as anyone else. Background: Children with identified special educational needs are at higher risk than other children of having visual needs that are not adequately met. This paper evaluates the impact of addressing the visual needs of these children on behaviour and academic achievements in a number of case studies. Method: Nine children (4–11 years of age, from four classrooms), who attended a special school in a medium‐sized town in the UK, took part in the case studies reported here. The children were part of the Special Education Eyecare (SEE) Project. Six of the children were selected because they had unmet visual needs at baseline and required bespoke interventions to meet these needs; the other three children were selected because their visual needs had been met prior to the study and no further adjustments were needed. Repeated direct observations were conducted to assess the impact of the intervention on the children's behaviour in the classroom. The observer was "blind" with regard to the visual needs of the participants. Parents and teachers completed the Strength and Difficulties Questionnaire (SDQ) for each child, before and after the intervention. School files were analysed to assess effects on academic achievement. Findings: Subsequent to the implementation of bespoke visual adjustments, for example prescription of spectacles or changed seating in classroom, significant and sustained changes were observed with regard to the children's behaviour (i.e., increased engagement with peers and/or teachers and decreased off‐task behaviour). Strength and Difficulties Questionnaire scores showed improvements regarding total difficulties, emotional difficulties, hyperactivity and prosocial (kind and helpful) behaviour. Due to highly variable data in school files, the effects on academic achievement were inconclusive. Discussion: The case studies reported here explored changes in behaviour of children with identified special educational needs after their visual needs were met. Findings show a positive overall effect on the behaviour of these children. [ABSTRACT FROM AUTHOR]

This paper is about working with people with learning disabilities to develop a research (or 'finding out') study. We worked with people from Reach, a group-advocacy project, which is part of Assist in Staffordshire, to write clear and simple information sheets and consent forms to help people with learning disabilities and dementia to participate in a research study. We also worked with members of Reach to create appropriate, clear and simple interview questions to ask people with learning disabilities and dementia about their experiences. Working alongside people with learning disabilities helps to ensure the work is fit for purpose. There has been an increase in inclusive research in the learning disability field; however, this has not been reflected within learning disability and dementia research, where little is known from the perspective of people with learning disabilities. This paper will define inclusive research, explore reasons for the dearth of inclusive dementia research, and identify the challenges of conducting dementia research involving people with learning disabilities. Examples of working with people with learning disabilities to develop elements of a PhD research study will be detailed and critically discussed. These experiences aided the creation of accessible material about dementia for a PhD research study. Subsequently, this helped to overcome challenges of communication within the research study and helped to promote the participation of people with learning disabilities and dementia. Sharing these ideas about how we worked together will help others who are seeking to engage and achieve more inclusive research practices with marginalised populations. [ABSTRACT FROM AUTHOR]

An introduction is presented in which the editor discusses articles in the issue on topics concerning people with learning disabilities, including use of psychotropic medication to manage behaviours, active adult life as independent living, and disabled persons' emotional experience of bereavement.

This article examines the 50 year history of the British Journal of Learning Disabilities, which was launched as Apex, the Journal of the Institute of Mental Subnormality, in 1973. Changes in language and terminology are tracked and the journal is placed in the context of wider policy and social developments. Three general phases are identified in the trajectory of the journal: the hospital period, the shift to community care, and the post‐institutional period. The journal was not entirely anti‐institution in its earliest days, and each transition through its different phases is gradual rather than abrupt. The enduring continuity of the journal's commitment to interdisciplinarity, eclecticism and practice‐based research is evident throughout, and some of the controversies that have arisen from this approach are examined. The conflict between the desire to include people with learning disabilities in the journal and the academic demands of journal production is described. Accessible summary: This article is about the history of the British Journal of Learning Disabilities, which is 50 years old this year.It used to be called the Journal of the Institute of Mental Subnormality and later Mental Handicap. The article shows how language keeps changing over the years.The journal began when most people with learning disabilities lived in mental handicap hospitals, and then continued while the hospitals closed and care in the community began.The journal has always tried to help improve services in a practical way. It has struggled to include people with learning disabilities as writers and co‐researchers, but is now making some progress. [ABSTRACT FROM AUTHOR]

Accessible Summary People with learning disabilities should be included in research that is about them., There is a law in England and Wales called the Mental Capacity Act that has rules that researchers must follow., This paper shows how one researcher used those rules to ensure people with learning disabilities were able to be involved in a research project., Summary This study describes the experiences of a researcher negotiating consent with people with learning disabilities to become participants in a research study. The study was about how the Mental Capacity Act ( MCA) was applied to everyday decision-making in social care settings. However, before data collection could begin, the researcher had to follow the principles of the MCA and the requirements of ethical research practice. The study reports on the important role of gatekeepers in allowing (or preventing) access to potential participants. However, gatekeepers did not always act in a manner in keeping with the first principle of the MCA. Additionally, the dilemmas for a researcher in assessing participants' capacity to consent to the study are described, as are three approaches followed which supported people to decide for themselves. [ABSTRACT FROM AUTHOR]

Accessible Summary People with learning disabilities have a right to be given easy information about research which is about their lives. At the Norah Fry Research Centre, we have tried to do that., We have employed a person with learning disabilities Julian Goodwin. In this paper, he looks back at the importance of the work he has done., We think about the questions and difficulties in making information about research 'easy'. For instance different people with learning disabilities need different types of information., Easy information is changing, and we need to look forward to better ways of getting research messages out to people with learning disabilities., Summary This paper discusses the provision of easy information about research to people with learning disabilities, their families and supporters. We explore some different ways we have used over the past 25 years, to make sure that research has the greatest impact both in the UK and abroad. We discuss first the process of providing easy-read versions of research at the Norah Fry Research Centre, where two of us, Goodwin and Townsley, worked on a series called Plain Facts funded by the Joseph Rowntree Foundation. We have always used different media such as audio, but more recently, have started to use video as a way of getting information out to people with learning disabilities. We aim to present the 'easy information' work done at Norah Fry, to reflect on its impact, and set it within the context of the move towards accessible information more generally, questioning some of the premises about 'impact' on which accessible information is based. [ABSTRACT FROM AUTHOR]

Accessible summary People with learning disabilities find it difficult to get their health checked and to get information about their health., Community learning disability nurses play an important role in supporting people with learning disabilities to stay healthy., Community learning disability nurses support people with learning disabilities to get their health checked and to get information about their health., Summary International studies have shown poor uptake of public health initiatives by people with learning disabilities. In addition, studies have shown that people with learning disabilities experience poor access to public health services. The contribution of community learning disability nurses in meeting the public health needs of people with learning disabilities has evolved differently across the UK resulting in conflicting understanding of this role. This paper reports on a study that explored and explained the contribution of community learning disability nurses in the implementation of public health policies for people with learning disabilities. The study demonstrates that community learning disability nurses are involved in health surveillance, health promotion, health facilitation, health prevention and protection, health education, and healthcare delivery. [ABSTRACT FROM AUTHOR]

Accessible Summary: Domestic violence abuse is when people hurt family members or partners with their words or actions, take their money or try to control them. It is against the law to do this. We wanted to know more about how many people with intellectual disabilities are being violent in their relationships. Forensic Community Learning Disabilities Team (CLDT) noticed more people were being referred to the team because they had been violent in their relationships. The Forensic CLDT looked at their referrals to see how many people were violent in their relationships. They also looked at referrals for their local Community Learning Disabilities Teams to see how many people were violent in their relationships. The research showed that more people who were referred to the Forensic CLDT needed help for violence in their relationships in 2015. The CLDTs also had referrals for people who were violent in their relationships. It is important to understand more about people with intellectual disabilities who are abusive in their relationships so we can help them. Abstract: Background: Domestic violence abuse (DVA) has been identified by the UK Government as a priority to address. Whilst there is a growing body of research into perpetrators of DVA from the mainstream population, there is scant research into perpetrators of DVA who have an intellectual disability. This lack of an evidence base suggests there may be a group of individuals for whom there is no suitable treatment approach. A Forensic Community Learning Disabilities Team (FCLDT) completed a multiservice evaluation of their service and sector CLDTs to obtain a measure of local unmet need. Materials and methods: A retrospective review was completed for referrals to the FCLDT and four of their sector CLDTs for 2014 and 2015. A record sheet was designed for the process of data collection and the analysis of referrals. Results: In regard to the FCLDT, 14% of the total referrals made to the FCLDT in 2014 referenced DVA perpetration and the figure rose to 26% in 2015. For CLDTs, 1.9% of the total referrals made to the CLDT in 2014 and 3.18% in 2015 referenced DVA perpetration. Conclusions: A significant proportion of referrals to the Forensic CLDT relate to the perpetration of domestic violence abuse. A proportion of Sector CLDT referrals made reference to behaviours that, according to the Home Office definition, would be classified as domestic violence abuse, but was infrequently referred to as such. The paper considers these findings in the light of the Home Office definition and its application to people with intellectual disabilities. [ABSTRACT FROM AUTHOR]

Accessible summary:: “Learning disability” replaced the outdated term, “mentally handicapped” in the UK over 20 years ago. Recently, some services and professionals have been using the term “intellectual disability” instead. In America, “intellectual disability” has been chosen to replace the old term, “mental retardation.” There has been lots of explanation why this has happened. In the UK, there has not been much explanation. It is important to know what terms mean and why they are being used because their use affects the lives of people with learning disabilities. This article looks at what different people in the UK think about term “intellectual disability.” Abstract: Background: The term “intellectual disability” is increasingly used to refer to people with learning disabilities in British learning disability policy, practice and research. This change is undoubtedly a reflection of the changing international context. The inclusion of the term “intellectual disability” has been particularly pronounced in countries such as the USA. By contrast, this change has been relatively silent in England. Methods: In light of this, the paper explores the discussions of 12 focus groups conducted with professional and lay groups working in or influencing learning disability research and practice in England. Each focus group was asked the following two questions: Have you heard of the term “intellectual disability” and how do you feel about the term “intellectual disability?.” Discussion and Conclusion: Thematic analysis of the discussions identified four dominant themes: dislike and disbelief; ambiguity; tautology; and fear. It is concluded that more explanation is required in order for researchers and practitioners in England to understand this semantic change. [ABSTRACT FROM AUTHOR]

Accessible Summary: Some clients in learning disability services have problems in their relationships with people. Some clients with learning disability have broken the law and live in hospital. For clients in hospital, treatment can be learning about managing behaviour, feelings and relationships.  This treatment is given by different professionals. This treatment is important to help stop these clients getting into trouble with the police again. An important part of treatment is to help clients understand their experiences in relationships. This case study is about Oliver, and how psychologists and an art therapist worked together to help him.​ Abstract: Background: Clients with attachment issues are over‐represented in learning disability services. Forensic inpatient services are no exception. Treatment pathways comprise multidisciplinary interventions, and skills‐based treatments are considered vital to recovery and maintenance of prosocial and adaptive behaviour and reduction in risk. An important aspect of treatment is the psychological intervention to enable clients to understand their early experiences and the way this may have impacted on later relationships and behaviour. Without exploring the difficult early lives that many clients in forensic inpatient services have experienced, skills‐based treatments and attempts to facilitate discharge may not be effective. Materials and methods: This case study presents the theoretical background of attachment, autism, learning disability and sexual offending that informed the collaborative multidisciplinary psychological treatment offered to one man with learning disabilities and autism in a secure forensic setting. Results: The introduction of Art Psychotherapy enabled the client to explore his history and the potential internal barriers to his therapeutic progress. Issues of safety and belonging, previously unexplored with this man, were uncovered and these themes were incorporated into his risk formulation and treatment plan. Conclusions: The paper reflects on the specific contribution of Art Psychotherapy in specialist services, and the importance of the collaborative relationship between the Art Psychotherapist and the ward Multi‐Disciplinary Team. [ABSTRACT FROM AUTHOR]

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. Abstract: Background: 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. [ABSTRACT FROM AUTHOR]

Accessible summary When people report being sexually assaulted they can be examined by a specially trained doctor to see how the assault might have affected them. They may also ask for help from a counsellor or other specially trained support workers. These staff might belong to a sexual assault referral centre ( SARC)., This study reports findings from work that staff from St Mary's SARC in Manchester did so that they could improve the services they offer to people with learning disabilities who have been sexually assaulted., A staff survey showed that staff thought they might not always recognise if a person had learning disabilities or another learning difficulty like dyslexia. We wonder if knowing the difference is as important as knowing how to support people well. Looking at patient notes showed that patients with learning disabilities received less follow-up care than patients without learning disabilities., This study describes the first step that the SARC team took to improve their service. Improvements have been made based on these first findings, including some of those recommended by staff in their surveys. These will be reported in another paper to see if they have made a difference to people with learning disabilities., Abstract Background People with learning disabilities are more likely to experience sexual abuse and less likely to access support than the general population, this is due to a range of variables at the individual, societal and service-delivery level. This study presents a service evaluation of St Mary's Sexual Assault Referral Centre, Manchester to explore its ability to provide meaningful support to people with learning disabilities and to identify ways to improve its responses. Materials and Methods The service evaluation had two components: (i) A staff survey to elicit self-perception of the knowledge and skills required to meaningfully support people with learning disabilities who attended the centre following an allegation of rape or sexual assault (ii) An audit of patient notes to compare service delivered to patients with a learning disability to those without. Results Forty-two members of staff (over 75% response rate) completed the survey which found a lack of differentiation between learning disabilities and other types of neurodiversity. The majority of responders reported having enough knowledge about learning disabilities to do their job and feeling confident in their abilities. Nonetheless, all the staff reported that they would like more learning disability training. An audit of the patients' notes found people with learning disabilities accessed fewer follow-up care services than people without learning disabilities. Conclusions The results identify areas for staff training to improve meaningful support for people with learning disabilities alongside a note of caution against a focus on labelling. By introducing more accessible support a diverse group of people can benefit. [ABSTRACT FROM AUTHOR]

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, . Abstract Background 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. [ABSTRACT FROM AUTHOR]

It is important to be aware of hearing loss as it affects everyday life and gets worse with age in all adults. Many people with learning disabilities do not have their hearing checked, and families or carers often struggle to notice hearing problems. This study summarises previous research on hearing loss and old age for people with learning disabilities. Large numbers of older people with learning disabilities were found to have hearing problems, but smaller numbers were aware of this before testing. Everyone with learning disabilities should be aware of how important hearing is and have regular checks, especially before they reach old age. Hearing loss has a significant impact on living well and on communication in all adults, with the numbers affected increasing with age, and adults with learning disabilities being at particular risk. A review of the literature on hearing loss in older adults with learning disabilities was completed. A significant increase in hearing loss with increasing age in this group was demonstrated, at a greater level than in the general population. Prevalence rates have been the main focus of research, with few considerations of access to hearing assessment or benefits of rehabilitation such as hearing aids, or the effect that age has on living with hearing loss. With advances in audiology services and increased life expectancy of those with learning disabilities, further research would be valuable. In addition, all health and social care services should consider actively promoting hearing assessment and rehabilitation. Individuals, carers and families should also take action, not only when concerns around memory arise, but proactively for all. [ABSTRACT FROM AUTHOR]

Accessible summary This paper looks at the friendships of Ben, (not his real name), a 10-year-old boy with autism and learning disabilities, in his mainstream school., Ben was able to name his friends and showed that he understood some important things about friendship., Adults in the school said that Ben was very keen to have friends and that some of his friendships had lasted for over a year., The study focused on the importance of listening to children with autism and learning disabilities and on the need to highlight their social strengths., Summary Whilst progress has been made in understanding the friendships of children with autism, research on the friendships of children with additional learning disabilities remains extremely limited. In this research, a qualitative case study approach provided a rich description of the friendship concepts and capabilities of Ben, a 10-year-old boy with autism and severe learning disabilities within the context of a mainstream primary classroom in the United Kingdom. An innovative activity-based strategy was used to gain Ben's own perspectives in relation to friendship. Findings revealed that Ben exhibited a strong desire to have friends, believed himself to have some, demonstrated some understanding in respect of degrees of friendship and displayed a commitment to friendships over relatively long periods of time. Methodological, developmental and capacity perspectives informed the discussion, with a case being made both for a greater focus on the friendship capabilities of children with autism and learning disabilities and their more direct inclusion in the research process. [ABSTRACT FROM AUTHOR]

Accessible summary Parents with learning difficulties often face lots of barriers to being the best parents they can. They often do not have the support they need., The Norah Fry Research Centre ( NFRC) found out how to support parents with learning difficulties. It developed a network to help professionals work with parents with learning difficulties., Some professionals are working well with parents. Many professionals do not have the time, training or support they need to work with parents in a more positive way., Summary This paper considers the impact of research and development work around parenting by adults with a learning difficulty undertaken at the Norah Fry Research Centre ( NFRC) since 2005. It discusses how our understanding of the support needs of parents with learning difficulties grew through an initial mapping study which led to the concept of 'Parenting with Support'. It then discusses the development of the Working Together with Parents Network which has endeavoured to continue to draw together and promote positive support for parents with learning difficulties and how the subsequent research at NFRC has been undertaken with a desire to further understand and support the development of this positive practice. It describes how this work has supported professionals already aware of parents with learning difficulties' support needs and but has yet to engage with the far wider range of professionals and agendas involved in supporting vulnerable families. [ABSTRACT FROM AUTHOR]

Accessible Summary The Norah Fry Research Centre is named after Norah Fry who was one of the first women to stand up for people with learning disabilities., Over a 100 years ago Norah Fry visited people with learning disabilities and their families in Bristol and Somerset to find out what they needed to enjoy better lives., She wrote reports about what she had found and people wrote down what she said should be done to make life better., When she died she left money to the university to be used for teaching and for finding out more about the needs of people with learning disabilities and those who were mentally ill., We can now look back on the changes that she wanted to make and the problems she faced in trying to bring about change., Summary This paper explores how Norah Fry's concerns of 100 years ago have been relevant to the work of the Norah Fry Research Centre. In 1898, Norah Fry began to investigate the social conditions and educational needs of people with learning disabilities living in Bristol and Somerset. In reporting her findings to a Royal Commission in 1905, she set out her vision for the future. For over 50 years, she was a champion for people with learning disabilities. She canvassed support for schools for those excluded from education; she led campaigns to close the parish workhouses; and she sought to establish new patterns of residential support. This account of Norah Fry's life and legacy explores the results of the social investigations which she carried out, the policies that emerged from her work and the resistances she encountered in working for change. [ABSTRACT FROM AUTHOR]

Background: During the Covid‐19 pandemic, there has been a worldwide increase in the use of digital technology. Many people with learning disabilities have learned new digital skills, taken part in online activities, and kept in touch with family and friends using video calls. However, the experiences of digital participation or nonparticipation for the people with profound and multiple learning disabilities (PMLD) is less understood. Method: Between December 2020 and August 2021, family carers or paid support workers of adults with PMLD completed an online survey around the experiences of the person they care for during the Covid‐19 pandemic, including questions on Internet use. We draw on the findings of this UK‐wide study to explore the digital participation of the people with PMLD during the pandemic. Findings: Around half of the people with PMLD had Internet access at home. Around half of the participants interacted with others on video calls like Facetime or Zoom and most commonly used the Internet for being with family and friends online and streaming TV and films. In the event of another lockdown, 27.5% of the people supporting someone with PMLD said they would like support with technology to make seeing friends and family easier. For some the people, digital participation during the pandemic was not beneficial enough to want to continue when restrictions eased. For others, the new online experiences had the potential to be developed in their postpandemic lives. Conclusion: Around half of the people surveyed participated in digital activities during Covid‐19. Future attention is needed to afford more people opportunities, and respond to access barriers experienced for the people with PMLD and those that support them. Accessible summary: During the Covid‐19 pandemic, a lot of people with learning disabilities used the Internet more than they had done before. Before this research, we did not know very much about how people with profound and multiple learning disabilities might be able to use the Internet.Family carers or paid support workers of people with profound and multiple learning disabilities filled in an online survey about their experiences during the Covid‐19 pandemic. This included how people with profound and multiple learning disabilities used the Internet.The researchers found that around half of people with profound and multiple learning disabilities in the study had Internet access at home. People with profound and multiple learning disabilities mostly used the Internet for being with friends and family online and for streaming TV and films. Around half of people with profound and multiple learning disabilities used video calls (like FaceTime or Zoom).If there is another pandemic, and people cannot go out, more help with technology is needed so that people with profound and multiple learning disabilities can see their family and friends online. This is very important for people who do not live with family.Some people thought digital participation was useful during the pandemic, but they preferred to see people in‐person. For others, being online was a new way of being with other people that they wanted to carry on using or make better. [ABSTRACT FROM AUTHOR]

An introduction is presented for the special issue, dedicated to research surrounding the work of the Norah Fry Research Centre of the University of Bristol, England, highlighting contributions by Kerrie Ford, Val Williams, and Beth Tarleton,

Background: This qualitative study explored the attitudes and experiences of Hong Kong Chinese parents/carers relating to the sexual needs of their child with intellectual disabilities. Methods: Semi‐structured interviews were conducted in Hong Kong with seven parents/carers applying Interpretative Phenomenological Analysis to explore their experiences of and attitudes towards the sexual needs of their adult child with intellectual disabilities. Findings: Data revealed three salient variations in participants' attitudes towards the child's sexual needs: concern, reluctance and prohibition. Participants' anxiety about discussing sexuality was evident. Most participants further displayed a layer of feeling that combined 'love' and 'grief'. Based on Goffman's dramaturgical perspective, participants exhibited front stage and back stage behaviours that are believed to be strongly influenced by stigmatisation and collectivist culture. Conclusion: Various levels of intervention to reduce stigma are identified and discussed. This study also highlighted the role of caring professionals in generating awareness of the cultural impact on the family and the need to carefully address the subtle feelings experienced by family members with intellectual disabilities. Accessible summary: People with intellectual disabilities experience physical changes and wide‐ranging sexual expression. Their parents are among the most important influences on the development of their sexuality.This study investigated the experiences and attitudes in Hong Kong of parents/carers with an adult child with intellectual disabilities regarding their child's sexuality.We considered what mattered most to parents/carers in three areas: They have had less concern with sexuality, they were hesitant to talk about sex, and were not allowing their adult child with intellectual disabilities to have sex or romantic relationships. Parents/carers were also anxious about discussing sexuality and displayed feelings that combined 'love' and 'grief'.Stigma should be reduced. Caring professionals should also be aware of the cultural factors that impact the feelings of people with intellectual disabilities and their parents. [ABSTRACT FROM AUTHOR]

Accessible Summary: We wanted to understand more about how people with learning disabilities are building active community lives to help belonging.We spoke to 39 people from 29 different support organisations, 7 local authority representatives and 43 people with learning disabilities.They said belonging was about having the time to connect with other people in "everyday" places, being part of a supportive network and having the right choice and information.Belonging is like a cake. It needs the right ingredients. These ingredients include the right combination of people, places and times.Because of cuts to funding, many people with learning disabilities lack the right support, choice and information to access their communities. This is not belonging. Background: This journal article draws on findings from a research project that examined how people with learning disabilities and their allies were seeking to build a sense of belonging. We wanted to focus on the concept of "belonging" in the context of personalisation and reduced government social care funding. Specifically, we sought to understand how people with learning disabilities and their supporters were coming together to "self‐build" networks of support including friendship clubs and self‐advocacy groups to enable a greater sense of belonging in their local communities. Methods: Qualitative interviews were conducted with seven local authority representatives across four case study areas in the UK, as well as 39 staff across 29 organisations providing a range of day and evening support and activities. We also talked to 43 people with learning disabilities across the four areas about their experiences. Findings: Our findings demonstrate how belonging involves a complex configuration of actors, places, times, relationships and institutional roles (much like the ingredients in a cake). The ways in which belonging intersects with agency and choice was also identified as an important and novel finding of our study. Conclusion: While belonging is often presented to people as a desirable and realisable outcome of social inclusion policies, cuts in funding and a lack of appropriate support frustrate people's desires to meaningfully belong with other people in their local community. This demonstrates the importance of supporting social environments that meet people's needs for social connectedness and belonging. [ABSTRACT FROM AUTHOR]

Accessible summary Those who support people with learning disabilities should listen carefully to what they have to say., Whilst sharing life stories can be a good way to listen to someone, not everyone is able to talk about their story., Here, four people who have a learning disability share their stories by singing, taking photographs or making a scrap book, and looking for themes in their work., The four people enjoyed their work and found that sharing it with others was a helpful way to let people know something about their lives, their skills, and what is important to them., Summary The experiences and opinions of people with learning disabilities are often ignored or devalued. Oral and life history projects allow individuals to communicate their own opinions and experiences. This process can lead to more meaningful interactions between those with learning disabilities and support workers. Whilst the interview techniques often employed by life history projects may not be appropriate for those with limited verbal abilities, alternative methodologies such as photography, drawings, music and poetry may be adopted. The current study demonstrates that a life history approach incorporating creative techniques can provide valuable information about the beliefs, experiences and values of people with learning disabilities. Therefore, creative forms of communication should be encouraged to promote personalised care and greater representation in learning disability research. [ABSTRACT FROM AUTHOR]

My name is Paul Christian. I am a Black British man with learning disabilities. The lives and experiences of Black people with learning disabilities are under ‐ represented in the UK history of learning disability. This article explains my involvement in activism to change this and shares the learning from these projects. It discusses the process of co‐writing and why research is needed to record and share the experiences of Black people admitted to the former institutions and the importance of accessible information about Black history, race and racism. Accessible summary: My name is Paul Christian. I am a Black British man with learning disabilities.We do not know much about the lives of Black British people with learning disabilities in the past. This article explains work I have begun to change this.It describes three pieces of activism in support of the Black Lives Matter movement. It shares learning from these projects and ideas for next steps. It tells the story of how I met Sue my co‐author and explains how we wrote this article together.This study is important because it shows more research is needed to understand the experiences of Black people admitted to long stay institutions. It demonstrates how people with learning disabilities are coming together to learn and talk about Black British history, discrimination and race, and to take action to stop racism. It encourages people interested in co‐writing to try it out. [ABSTRACT FROM AUTHOR]

Accessible Summary: This research explored the experience of four fathers of autistic children who also have learning disabilities.Fathers' experiences as carers are increasingly recognised in the literature; however, the studies of parental experience tend to centre mothers. The current research builds upon the recent and important focus upon fathers' experiences.The fathers in this study sometimes felt helpless and unable to fulfil the traditional role as protectors and providers, but they also had strong feelings of closeness with their children and developed new identities through the challenges and joys they experienced alongside their children. Background: This small study explores the lived experience of four UK‐based fathers (one black British, one white Polish and two white British) caring for at least one child with a dual diagnosis of learning disability and autism. The key aim was to get as close as possible to understanding the experience of these fathers in their role as carers. Methods: The study makes use of interpretative phenomenological analysis (IPA) as an approach to gathering (via interview) and making sense of the fathers' experiences. Findings and discussion: We co‐constructed three themes following analysis of the interview transcripts: "fatherhood: not doing enough, not doing it right"; "crossing worlds: relearning how to communicate and reclaiming fatherhood"; and "uncertain futures." We found that, for these fathers, the experiences of anxiety and helplessness were balanced with the appreciation of their value as protectors, their shifting sense of identity and of their closeness with their children. Relationships were central throughout. Conclusions: The exploration of fathers' experiences helps to highlight the less‐measurable, nuanced aspects of the joys and challenges of caring for children with dual diagnoses of learning disability and autism which might be used to enhance the support provided and to inform new approaches. [ABSTRACT FROM AUTHOR]

Accessible summary: People with learning disabilities who are vegetarian or vegan in this study choose not to eat meat because of their love of animals, the concern for their welfare and a dislike of them being killed to eat.People with learning disabilities in this study did not think other people with learning disabilities are aware that animals are killed for meat and do not have the information to make an informed choice about eating meat.Participants in this study have supportive staff and families who help them to cook and eat a vegetarian or vegan diet.Some people with learning disabilities worry about the healthiness and fat content of meat, and also diseases that animals may have which go into meat. Background: Adopting a vegetarian diet is becoming increasingly popular within the UK, for reasons such as perceived health benefits and concerns over animal welfare. The study explores attitudes towards vegetarianism/veganism among adults with learning disabilities. Materials and Methods: Semi‐structured interviews were conducted with eight people with learning disabilities who did not eat meat across the UK. Results: Participants who adopted a meat‐free diet did so predominantly for animal welfare. Participants cared passionately about the welfare of animals but were reluctant to advocate their lifestyle to other people with learning disabilities, where they are in the minority for their dietary choices. Participants felt most people with learning disabilities were not made aware of the reality that animals are killed for food and that they should have accessible information to make an informed choice about whether to eat meat. Conclusions: Holding the identity as a vegetarian could potentially facilitate integration into mainstream organisations where people hold similar ethical beliefs; however, this is unlikely unless organisations increase their inclusivity such as providing accessible information. [ABSTRACT FROM AUTHOR]

Accessible Summary: Becoming an adult can be a difficult time. We wanted to find out what it is like for parents who have a son or daughter with an intellectual disability. Ten parents were interviewed. They were asked questions about being in their family, helping their son or daughter, and support services for people with an intellectual disability and their parents.Things that mattered the most to parents: Many parents were confused about what to do when their son or daughter became eighteen years old. They were worried about the future. Independence was important. Parents found it hard sometimes helping their son or daughter to be more independent. Getting more help and talking to other parents.Services and staff can help by: Working together in a better way to help parents. Setting up support groups for parents to talk together and learn from each other. Writing better plans with every person with an intellectual disability. Background: Transition to adulthood is an important time for young people and may be a particularly challenging time for people with intellectual disabilities. However, there has been little research in the UK regarding the experiences of parents who have son or daughter with an intellectual disability transitioning to adulthood. Method: The study used interpretive phenomenological analysis to explore the lived experiences of ten parents who had a son or daughter (aged 18–25 years) with an intellectual disability. Half of the sample also had a diagnosis of autism. Results: Three superordinate themes were generated from the data: (a) Transition: The Good, the Bad and Unknown; (b) Striving for Independence; and (c) Supporting the Supporters. Parents experienced many difficulties and uncertainty related to their role, their son/daughter's independence, navigating services for their son/daughter and accessing support for themselves. Conclusions: Increased collaboration and consistency from statutory services is required in addition to providing emotional support to parents and facilitating parent support networks. [ABSTRACT FROM AUTHOR]

Accessible summary: Young children with Down syndrome often have serious health conditions, such as heart or thyroid problems.It is important that health professionals follow guidelines to make sure that these health conditions are diagnosed and treated.We asked parents of children with Down syndrome aged 0–5 years whether their child had received health care as set out in the guidelines.Parents reported that guidelines were mostly followed at birth and for diagnosed health conditions. Guidelines were less likely to be followed after birth and for checking for undiagnosed health conditions. Background: Children with Down syndrome have an increased risk of serious health conditions, particularly in early childhood. Published guidelines promote the identification and monitoring of health issues and adherence could reduce health inequalities, yet there is limited research about the extent to which health monitoring occurs as recommended. This study aimed to investigate the health monitoring of children with Down syndrome aged 0–5 years in the UK. Materials and Methods: Twenty‐four parents of children with Down syndrome with a mean age of 32 months (10–65 months) participated. They completed a questionnaire about their child's healthcare usage, diagnoses of health conditions and whether health checks had been completed at birth and since birth. The results of the questionnaires were charted and compared to the schedule of checks produced by the Down Syndrome Medical Interest Group UK. Results: Children with Down syndrome had high usage of health services and reported significant health issues. There was high adherence to published guidelines for the majority of health checks at birth, although 38% of children had not received all recommended checks. Not all health domains had been monitored since birth for all children, particularly breathing and blood (excluding thyroid). With the potential exception of sleep apnoea, diagnosed conditions appeared to be monitored. Conclusions: This study suggests that health monitoring after birth and screening for nondiagnosed health conditions is variable for children with Down syndrome. Further research should examine convergence of these findings with medical records and clinicians' experiences across the UK. [ABSTRACT FROM AUTHOR]

Accessible Summary: People with learning disabilities have unmet health needs. Annual health checks were brought in to improve health care, but do they work? The research shows checks lead to more tests for illness and illness being identified. A lot of people still do not see their doctor, and not all doctors do health checks. Future research needs to understand how people with disabilities feel about seeing their doctor or nurse, and how doctors and nurses feel towards them. Abstract: Aim: To explore the benefits and disadvantages of annual health checks for people with learning disabilities, including: What are the rationales and outcome measures for health checks? How well do health checks meet the needs of people with learning disabilities? What areas does research in this topic need to focus on in the future? Background: Health consultations are an interpersonal activity that influence health outcomes and attitudes towards self and health professionals for people with learning disabilities. Annual health checks have been introduced to improve health inequalities for people with learning disabilities. Method: A narrative literature review of health care for people with learning disabilities was undertaken to evaluate health care for this population, and specifically the outcomes from annual health checks. Findings: While annual health checks have made some improvements in terms of health outcomes, attendance for appointments is still low, provision is variable and experiences of health checks for people with learning disabilities are under‐researched. Conclusions: Service user‐led research into their health experiences is needed. Research into the attitudes and experiences of health professionals in relation to people with learning disabilities is needed. Healthcare inequalities are only being partially addressed—improvement is needed in terms of service user experience and engagement. [ABSTRACT FROM AUTHOR]

Accessible Summary People with learning disabilities talked about what it was like to move out of hospital. People talked about how important their relationships with other people were. People wanted to feel comfortable with new members of staff so that they felt safe and happy in their new home. People talked about how moving out of hospital changed how they thought about themselves. When they were in hospital, people sometimes thought that they were “bad.” But after they moved, some people started to think that they were a different person. It is important for everyone to think about how they talk to people when they are in hospital, and when they have moved out. People can do really well living in their own home, rather than in hospital. Abstract: Background: People with learning disabilities are moving out of hospitals as part of the Transforming Care programme, although thus far their views on how they have experienced this have not been researched. Materials and Methods: A qualitative design was used to explore how people with learning disabilities experienced moving as part of Transforming Care. Eleven people took part in semi‐structured interviews; they were supported by Key Support People (n = 9) who knew them well. A social constructionist Grounded Theory approach was used in analysis. Results and Discussion: People reported that their relationships with other people, including friends, family and staff, played a significant role in how they experienced the move. Moving was also an opportunity for people to shift their ideas about who they were as a person and opened up a wider array of stories about their identity. Conclusions: A number of recommendations are discussed, relevant for staff working in this field to support positive transitions out of hospital. [ABSTRACT FROM AUTHOR]

Accessible summary: Four people with learning disability talked about what it was like when someone they cared about had died. They said that it was important they were included, but that it was hard. They said they carried on loving the person after they died and that they missed them. Abstract: Background: Bereavement is a universal experience, yet little research has explored the lived experience of bereavement for people with learning disability (PWLD). Materials and methods: Four PWLD were interviewed about their experience of bereavement. Data were analysed using interpretative phenomenological analysis. Results: Four themes were identified: “Needing to know: Being included,” “Struggling to say: The emotional experience,” “Love after death: A continuing relationship” and “Missing their presence: The wider impact of death.” Conclusions: PWLD should have the opportunity to make informed choices about their level of involvement and to develop their emotional experience. PWLD should be supported to develop a continued bond with the deceased and the wider impact of their loss recognised. [ABSTRACT FROM AUTHOR]

Accessible summary: Dementia is an illness caused by damage to a person's brain. People with learning disabilities, especially people with Down's Syndrome, are more likely to get dementia, and when they are younger. We talked to people working in community learning disability teams to find out what they thought about services and support for people with learning disabilities and dementia and carers. Screening and assessments mean that people get diagnosis and support more quickly and other problems are picked up. More appropriate housing and support is needed so people can stay at home for longer. Research needs to look at the best ways to support people with learning disabilities and dementia. It is important to find ways to involve people with learning disabilities and dementia and carers in meetings about their support and future research. Abstract: Background: Dementia prevalence rates are higher amongst people with learning disabilities than the general population. People with Down's syndrome are at even greater risk of developing dementia and of developing dementia at an earlier age. This study, conducted as part of a wider service evaluation, explored community learning disability team perspectives on screening, pathways, training, information and supports developed to improve services for people with learning disabilities and dementia. Methods: A focus group was held with health and social care professionals working in community learning disability services. Thematic analysis was used to analyse the data. Results: The dementia screening, pathways and processes had become embedded in practice, leading to a common framework, an efficient, multidisciplinary, proactive approach, earlier detection and diagnosis of dementia and identification of other health needs and issues. This avoided crisis situations supporting people to remain at home longer. Training and information were felt to improve care quality and reduce caregiver anxiety. People with learning disabilities and caregivers were involved to varying extents. External influences impacting on support included the availability, appropriateness, cost and effectiveness of different models of service provision. Conclusions: Service developments have been made as a result of the findings which suggest that dementia pathways and supports improve service provision and outcomes for people with learning disabilities. It is important to develop the evidence base on the effectiveness of different service models for people with learning disabilities and dementia. Future studies need to gather views of people with learning disabilities and carers. [ABSTRACT FROM AUTHOR]

Accessible summary We wanted to find out what adults with learning disabilities who receive challenging behaviour services thought about challenging behaviour and the services they receive., We met with people in small groups and talked with them about challenging behaviour., There were barriers to attending the groups like services not having enough staff or transport., People in the groups told us what they thought of words like challenging behaviour, what they understood about challenging behaviour services, and what it was like meeting with them., Abstract Background Following scandals such as Winterbourne view, Department of Health, (A national response to Winterbourne View Hospital, 2012) seeks changes in challenging behaviour services. A key part of this change is ensuring people with learning disabilities who use challenging behaviour services have more personalised support and their voices are heard. Materials and Methods This article describes a study that used focus groups to explore challenging behaviour and challenging behaviour services with people with learning disabilities who used community-based challenging behaviour services. We analysed the focus groups using thematic analysis. Results We found three main themes: Engaging with service terminology: the language of Challenging Behaviour; Locating and Framing behaviour; and Engaging with Professionals. Conclusion People with learning disabilities who receive challenging behaviour services are able to participate in focus groups and tell us about their experiences. Further consideration is required concerning how people with learning disabilities experience their engagement with challenging behaviour services. This study has led to a larger study currently in progress. [ABSTRACT FROM AUTHOR]

Accessible summary Most physical activity (PA) studies exclude individuals with severe and profound intellectual disabilities, and the reasons for these exclusions are unclear. Therefore, this study explored the practicalities of recruiting and measuring adults with intellectual disabilities, including those with severe and profound intellectual disabilities., Each individual and their carer or family filled in a questionnaire where they were asked about their PA over the previous 7 days; thereafter, they were given an accelerometer for 7 days to measure their physical activities., Four things were found to be important for this type of study: (i) where participants lived; (ii) what was used in measuring their PA; (iii) their reported PA was similar to what their family/carer reported; and (iv) it was also similar to what was measured., The study showed that it is possible to measure PA irrespective of the intellectual disability severity and that adults with intellectual disabilities can tell you about their PA and so can their relatives/carers without the need for expensive equipment., Abstract Background Few studies have measured physical activity ( PA) levels of adults with intellectual disabilities using both objective and subjective methods, but none included individuals with profound intellectual disabilities. To inform effective measurement of PA across the disability spectrum, this study explored: the feasibility of measuring PA levels using the International Physical Activity Questionnaire-short version ( IPAQ-s) and a wrist-worn 7-day accelerometer; examined the level of agreement between instruments/raters; and established the recruitment rate. From the literature reviewed, no study has investigated these issues. Materials and Methods Two-hundred adults with intellectual disabilities from a local authority lists in UK were invited to participate. Participants were administered an accelerometer for seven days and the IPAQ-s (self and carer-reported). Results Twenty participants with mild to profound intellectual disabilities (20-70 years) were recruited. The response rate was significantly different between home (16%) and residential homes (4%): χ2(1) = 7.7, p < .05. All participants completed the IPAQ-s but only 15 completed 7-day accelerometer. Self and carer-reported PA had perfect agreement on IPAQ-s, and agreements between instruments using PA guidelines was substantial ( k = 0.6, p < .05). However, mean moderate-vigorous PA min/week differed between measures at 145 and 207 from IPAQ-s and accelerometer respectively. Conclusions Recruitment demonstrated a need for better engagement with residential homes. While both the IPAQ-s and accelerometers can be used to evaluate PA levels, the IPAQ-s was more acceptable and carer report was accurate, but it underestimated absolute moderate-vigorous PA levels. These findings indicate that IPAQ-s can be used to measure PA levels, including in those with profound intellectual disabilities. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Accessible summary Essential Lifestyle Plans are a good way for people with learning disabilities and their support workers to tell people about things they like to do, such as listening to music., These plans also tell people about the things that they need, like what medicine they may need to take., Sometimes it is not easy to put the things we like to do at home into these plans because there are lots of things we do every day., People need to think carefully about how the things we choose to do at home can be put into Essential Lifestyle Plans that are written for us and with us., Abstract Background: Person-centred planning, which commonly becomes formalised within services for people with learning disabilities through an Essential Lifestyle Plan ( ELP), was intended to help place the choices of individuals at the forefront of service provision. However, beyond UK government policy rhetoric, scholars have raised issues regarding the capacity of person-centred planning to empower people with learning disabilities to make choices about various aspects of their lives. This article assesses these debates, paying attention to the relationship between ELPs and choices made in relation to leisure activities. Materials and Methods:To examine leisure activities and choice-making in depth, the article draws upon ethnographic research conducted with four adults living in a supported living scheme. It focuses upon their domestic musical activities, connecting data derived from participant observation with the contents of ELPs. Results:This study found that person-centred planning underplayed processes involved with articulations of musical choice and also the peculiarities of the settings in which choices were made. It also found that leisure preferences expressed in ELPs did not effectively convey the richness and sociocultural significance of everyday domestic musical activities within the supported living scheme. Conclusions:Person-centred planning should not be divorced from social context, relationships and differing degrees of dependency. Domestic leisure activities such as listening to music, while not necessarily 'meaningful' in the terms laid out in UK policy discourse, can become crucial resources for social bonding for people with learning disabilities. Thus, they should be considered carefully as part of a dynamic, socially situated and person-centred planning process. [ABSTRACT FROM AUTHOR]