Accessible Summary In the UK very few people with learning disability and/or autism and their family‐carers have a paid job although a lot of them may wish to work. National plans from the Government have not helped to change this. This article talks about a consultation we did on adults with learning disabilities and/or autism who attend day centres and their family‐carers. We asked about their current situation, their employment and the barriers to work. We found out that very few people with learning disabilities and/or autism or their family‐carers were employed. We found that there were lots of things stopping people with learning disabilities and/or autism and family‐carers from being able to work. We conclude that disability theories like the “social model of disability” need to go back to looking at inclusion, citizenship and independence, based on the real life experience of people with a learning disability. The government needs to provide strong plans to help people with learning disabilities and/or autism and family‐carers get into work. “Co‐production” networks should be set up between people with learning disabilities and families to support employment. AbstractBackgroundOnly 5.9% of working adults with a learning disability are in paid employment and their family‐carers are similarly likely to be unemployed, as they continue to take on an extended caring and advocacy role as the welfare state retreats. Despite social policy efforts to stimulate employment for people with a learning disability, there has been little or no progress. Changes in the language of welfare benefit departments seek to use the words once heralded as success for the Disability rights activists and proponents of the social model: such as Inclusion, independence and citizenship. A new definition of the social model of disability utilising Hannah Arendt needs to redefine the “private” sphere of the lived experience of people with a learning disability to allow for a better understanding of the inter‐dependencies that exist between people with a learning disability, their family carers and a wider support network.Materials and MethodsEmpirical data were collected in a mixed methods study while undertaking a consultation on the future of day services for people with a learning disability in a Local Authority in the north of England, UK.ResultsThe results reveal high levels of inter‐dependence between people with a learning disability and their carers, combined with the continued financial struggle as a lived experience of caring. The study found that barriers in providing care and support restrict the rights of people with a learning disability and their carers to secure employment.ConclusionsThere is a need to reconceptualise the social model of disability to more closely resonate with the lived experiences of people with a learning disability and their carers. A newly revised theoretical approach should incorporate the "private" sphere of live acknowledging the inter‐dependent, co‐produced relationships, between people with a learning disability and their carers to support and enable employment for both people with a learning disability and their carers under the Care Act 2014 (Department of Health, 2014).

Accessible summaryMindfulness helps us to “slow down” and notice how we are thinking and how we are feeling. When we notice our thoughts and our feelings, we can choose to do the things that help us to feel better. We wanted to know what people with learning disabilities thought of mindfulness. Nine people with learning disabilities told us what they thought about mindfulness.We found out that:People enjoyed mindfulness activities and the chance to socialise with other peoplePeople showed some understanding of mindfulnessPeople could do the mindfulness activitiesAbstractBackgroundA growing body of research supports the efficacy of mindfulness‐based intervention programmes (MBPs) for people with intellectual disabilities. Existing literature calls for focus on the experiences of people with intellectual disabilities participating in MBPs.Materials and MethodsThis study explored the experiences of nine adults with intellectual disabilities attending an eight‐week group MBP delivered within the community. Two audio‐recorded group discussions and seven semi‐structured interviews were thematically analysed.ResultsThemes were as follows: participants’ experience of the group as a meaningful and enjoyable activity; opportunities for socialisation, sharing, friendship and support; the significance of participant–facilitator relationships; and how participants understood and experienced the mindfulness exercises and concepts.ConclusionsSome understanding of mindfulness was evident, and participants demonstrated an ability to engage in mindfulness exercises. Findings inform the development of effective MBPs for people with intellectual disabilities.

Accessible summary This paper is about how parents adjust to parenting their child who has a developmental disability. We spoke to parents about their experiences and developed a theory to help explain how parents adjust when their child has a developmental challenge. As well as describing the stress, that parents experience, this theory also captures the fulfilment and sense of purpose that parents experience as they parent their child. This research is important because it helps explain what happens for parents after their child's diagnosis and provides suggestions on how services can improve to help families. AbstractThis paper describes a study exploring the parental response to the diagnosis of their child's developmental disability. A classic grounded theory methodology was used to analyse data comprising 19 interviews and 11 memoirs written by parents. The theory explains how parents adjust to champion their child, who has been identified as having a developmental challenge. At the heart of becoming a champion is a psychological process in which parents refine their perspectives on disability awareness, their aspirations and parenting capacity as they develop their championing skills. Refining perspectives and championing are influenced by two factors: the nature of the child's challenges and service factors. The theory of Confident Championing offers a multivariant model that explains the dynamic nature of the adjustment process, capturing both the stress and the fulfilment and sense of purpose that parents experience.

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. AbstractBackgroundThis 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.MethodsThe study makes use of interpretative phenomenological analysis (IPA) as an approach to gathering (via interview) and making sense of the fathers' experiences.Findings and discussionWe 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.ConclusionsThe 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.

Accessible summary This article presents part of the research project we carried out on the importance of social relationships and loneliness in young people with and without intellectual disabilities. We interviewed 23 young people during our research which was developed over more than a year and a half. Social relationships are important for young people both with and without learning disabilities. A person may want or need to be alone, but nobody wants to feel lonely. We wrote this article collaboratively. People with a intellectual disabilities do not often contribute to written papers. AbstractThis article presents the results of a project carried out by a group of researchers with and without intellectual disabilities on the importance of social relationships and loneliness. We wanted to find out about the experience of loneliness in young people with and without intellectual disabilities and know whether this was an important issue for them too. We interviewed a total of 23 young people during our research which was developed over more than a year and a half. This article has been organised into three parts. In the first part, the two academic researchers outline the concept of inclusive research highlighting the value of recognising and making the experiences of people with intellectual disabilities visible. Following this, the four authors describe how the research group was formed and the methodological decisions that were made. Finally, we report the results of the research and the main conclusions. The young people with and without disabilities we interviewed told us that nobody wants to feel lonely. We believe that it is important for other researchers at the university to recognise our work and be encouraged to implement inclusive research processes.

Accessible Summary In the past 30 years, many people with (intellectual) learning disabilities have been moved out of large “institutions” and into their own home in their local community These people are now often between 30 and 50 years old We asked people with learning disabilities aged between 30 and 50 and who are living in their local community what things, including work, that they enjoyed doing We asked people with learning disabilities aged between 30 and 50 and who are living in their local community whether they felt that they could make decisions about their life We found out the things that make their life good, and also what might stop people enjoying their life We learnt that people with learning disabilities should receive more support to assist them before they retire We learnt that people with learning disabilities still need more support and choice around who they live with AbstractBackgroundThis study investigated perceived quality of life (QoL) of community‐dwelling middle‐aged adults (30–50 years) with an intellectual disability and/or developmental disability living in rural or urban areas in New South Wales and Queensland, Australia. The specific aim of the current paper was to provide a descriptive evidence base of QoL and its specific domains by various key demographic characteristics of middle‐aged individuals. This cohort is likely to have either experienced or reached adulthood during and after large‐scale deinstitutionalisation in Australia.Methods and proceduresA cross‐sectional design was utilised, based on the QoL‐Q survey, testing domains of satisfaction; Competence/Productivity; Empowerment/Independence; and social belonging/community integration. The survey included demographic questions and was distributed to participants through disability support agencies across two states. The final sample included 291 respondents.ResultsThe overall QoL‐Q scores ranged from 3.0 to 29.5 (Mean = 20.4, SD, 4.1), with considerable variation in mean scores both across and within domains. The two demographic areas that showed greatest predictive value for QoL were work status and accommodation issues. The loss of agency and control in choice of co‐residents influenced perceived QoL for empowerment and independence domain of QoL‐Q.ConclusionsThe findings highlight QoL issues associated with policy decisions and support programmes for middle‐aged adults. The two key recommendations arising from the project are that future planning for post‐retirement or reduced working hours needs to commence at a much younger age than currently expected, and more attention needs to focus on facilitating individual decision‐making and choice within shared accommodation options.

Accessible summary People with learning disability who are living independently can find it hard to live well on their limited income. We interviewed 20 adults with learning disability who were living independently. They told us that living independently meant that they had choices. They also told us that it was difficult to afford things like going to dentists and doctors or going on holiday. Some liked to manage their own money while others liked having other people help them manage their money. Governments need to make sure people with learning disability are getting the support they need. AbstractBackgroundWithin Aotearoa New Zealand (ANZ), disability policy is directed at increasing choices for disabled people. However, funding to individuals remains insufficient to address wider social inequities that exist. While people with learning disability enjoy the freedom of living independently, they can be at risk of poor health outcomes and limited opportunities to fully engage within their community.MethodThis qualitative research explored the experience of living independently with 20 adults with learning disability within ANZ. Taking a constructivist perspective, interview transcripts were analysed to develop an understanding of their experience. Multiple readings resulted in comparison and contrast of data. The researchers discussed developing themes before settling on final themes.ResultsWith regard to money management, two themes were identified. The first illustrates the challenges of managing a budget, while the second highlights what people's limited budgets meant in terms of how they were able to live.ConclusionThis research reinforced previous studies whereby people with learning disability place a high value on having choices. However, it also demonstrated that social inequities within ANZ are not being addressed, as without other financial support, people on a benefit struggled to afford medical and dental care, or holidays and other leisure activities.

Accessible Summary Pharmacists are an important source of support for people with learning disabilities, healthcare professionals and carers. Pharmacists can support carers and healthcare professionals to manage medicines in line with stopping over‐medication of people with a learning disability, autism or both principles. Healthcare staff and carers were interviewed to see how they felt about working with a pharmacist and how this helped them to look after people with learning disabilities. Healthcare professionals and carers felt that the pharmacist was very helpful and listened to them. AbstractBackgroundThe issues surrounding the prescribing and monitoring of medications for people with learning disabilities and behaviours deemed to be challenging, and are complex in their management for patients, healthcare professionals and carers. The aim of the study was to explore the impact of the pharmacist independent prescriber on a medication clinic for people with learning disabilities and challenging behaviours from the perspectives of healthcare professionals and carers in a UK mental health Trust setting.Materials and MethodsQualitative methods were used to provide an understanding of the participants' interactions with the pharmacist in the context of the medication clinic. Individual, semi‐structured interviews were carried out with staff and carers, audio‐recorded and transcribed verbatim. A thematic analysis was carried out to identify themes which illuminated the participants' experiences. Recruitment took place December 2017–August 2018.ResultsNine participants took part (six staff and three full‐time carers). Eight themes were constructed from the data: five from staff and three from the carer cohort: being open to innovation and change in collaborative practice, challenging traditional norms in collaborative approaches to person‐centred care, proactive empowerment via maximisation of expertise and resources, supporting and empowering informed decision‐making, encouraging collaborative debate around medication, establishing authentic and interactive dialogue, gaining trust of the pharmacist independent prescriber's role in the management of patients and feeling empowered to challenge ambiguity and inconsistency in prescribing practice.ConclusionThe pharmacist independent prescriber is a valued asset, with high levels of interaction between all staff, carers and an integral aspect of services provided.