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The history of disability policies in Hungary is one of legal progress since the 1990s and EU-funded investments since 2004, yet mixed outcomes for disabled people. To date this paradox remains unexplored, especially how it plays out in the lived experiences of disabled people and their families. This paper aims to fill this knowledge-gap by exploring disabled people’s experiences of independent living over the past three decades in Hungary. Based upon 53 life course interviews – 34 with disabled people and 19 with family members – we identify seven barriers to independent living in Hungary, which create an adverse environment. We also highlight a number of facilitators that help people to overcome or mitigate this adverse environment. In the conclusion, we discuss trends in Hungarian disability policies that impact opportunities for independent living. Results suggest decades of human-rights inspired legal progress has made little difference in people’s lived realities.

Choice and control are pivotal in UK Government policy for achieving personalisation of social care for people with learning disabilities; however, little is known about the role care management plays in supporting people with learning disabilities finding social care services. This article explores that the support care managers provide people with learning disabilities, how care managers source and use information to offer choice in relation to accommodation and support, with a focus on people receiving managed budgets. Qualitative interviews with eight care managers from two local authorities in the South East of England were analysed using thematic network analysis, producing three global themes. The first ‘shaping choice’ describes the role of the care management process and assessments have in determining opportunities for choice. The gathering and interpretation of quality information is explored in the second global theme, highlighting the role of visiting settings to understand their quality. ‘Choice in principle’ is the third global theme, whereby the factors shaping choice come to be seen as choice akin to that anyone else has. These findings have implications for future policy and practice in relation to care management for people with learning disabilities.

This chapter provides an overview of how the situation of people with intellectual disabilities transformed in Hungary during the twentieth century. Focusing on four main historical periods – pre-1945, state socialism between 1945 and 1989, the era of post-socialist transformation from 1990, and the current period following Hungary’s European Union membership in 2004 – it highlights the development of policy and practice, and their impact on people. The chapter mostly draws on historical sources, and the analysis of published data and research. In addition, three vignettes illustrate some ‘typical themes’ in the life trajectories of individuals with intellectual disabilities and the various forms of exclusion they face in contemporary Hungary. Although the country underwent major political and societal transformation in the twentieth century, the exclusion of people with intellectual disabilities – and their families – remained a constant feature across historical eras and political regimes.

Migrant care workers play a significant role in meeting the escalating demand for social care in the UK. Workforce shortages create opportunities for new migrants to enter the social care workforce. This scoping review aims to identify and synthesise available evidence on the contribution of migrant workers to the provision of home care in the UK focusing on care worker and service outcomes as well as sustainability, and identify challenges and gaps in the context of Brexit and changing immigration policies. Twenty-two articles were identified for inclusion in the review and extracted using a structured format. The analysis presents a narrative description and synthesis of the research. Findings from the reviewed articles were grouped into five main themes: migrant, user and employer outcomes, effect on workforce, and sustainability—and 15 sub-themes that were described in detail. Much of the existing research on migrant care work is qualitative and focuses on migrant outcomes. The review identified some important gaps in research, namely, the impact of immigration status on migrant care worker outcomes, the cultural and psychological adaptation of migrant care workers to care practices, and the emerging UK live-in care market. Implications of findings are discussed in the context of post-Brexit immigration system.

© 2020 The Authors. British Journal of Learning Disabilities published by John Wiley & Sons Ltd Direct payments can help people with learning disabilities or autism to have good support. Often, family carers manage the direct payments for people who would find this very difficult. We asked family carers who managed direct payments to tell us why they decided to do this and what their experiences were. Family carers told us they found managing direct payments difficult and stressful at first, but this got easier over time. They also said that direct payments helped their family members to have more person-centred support. Abstract: Background There are a growing number of people with learning disabilities and autism who access personal budgets in the form of direct payments in England. Although they are often involved in decisions about their support, personal budgets are usually managed by someone else, typically a parent. This study examined the experiences of carers who manage personal budgets for adults with learning disabilities or autism with a particular focus on the challenges of securing suitable support and implications for their own well-being. Methods This was a qualitative study using a descriptive phenomenological approach to investigate the lived experiences of family carers who manage personal budgets. We conducted semi-structured interviews with 13 family carers. Interview transcripts were thematically analysed using the framework approach. Results Our analysis identified five main themes. The first theme relates to why carers decide to take up a personal budget in the first place and their initial expectations. The second theme, restricted choice, highlights the difficulties in securing adequate support and services in the context of what are often described as “complex needs.” The third and fourth themes relate to the tasks involved in managing a personal budget and the challenges associated with the dual role of the carer as a parent and a “professional.” The fifth and final theme, mixed emotions, describes the impact on the subjective well-being of carers. Conclusions Family carers indicated that the benefits of personal budgets outweighed the difficulties and stress inherent in managing them. They need adequate support to ensure that personal budgets deliver personalised and self-directed support and greater well-being, and are sustainable arrangements.

Background This study reports the experiences of developing and pre-testing an Easy Read version of the Adult Social Care Outcomes Toolkit (ASCOT) for self-report by people with intellectual disabilities. Methods The study has combined survey development and pre-testing methods with approaches to create accessible information for people with intellectual disabilities. A working group assisted researchers in identifying appropriate question formats, pictures and wording. Focus groups and cognitive interviews were conducted to test various iterations of the instrument. Results Substantial changes were made to the questionnaire, which included changes to illustrations, the wording of question stems and response options. Conclusions The process demonstrated the benefits of involving people with intellectual disabilities in the design and testing of data collection instruments. Adequately adapted questionnaires can be useful tools to collect information from people with intellectual disabilities in survey research; however, its limitations must be recognized.

User choice and personalisation have been at the centre of health and\ud social care policies in many countries. Exercising choice can be especially\ud challenging for people with long-term conditions (LTC) or disabilities.\ud Information about the quality, cost and availability of services is central\ud to user choice. This study used systematic review methods to synthesise\ud evidence in three main areas: (i) how people with LTC or disabilities and\ud their family carers ?nd and access information about the quality of\ud services; (ii) how quality information is used in decision-making; and\ud (iii) what type of quality information is most useful. Quality information\ud was de?ned broadly and could include formal quality reports (e.g.\ud inspection reports, report cards, etc.), information about the characteristics\ud of a service or provider (e.g. number and quali?cations of staff, facilities,\ud etc.) and informal reports about quality (e.g. personal experience, etc.).\ud Literature searches were carried out using electronic databases in January\ud 2012. Thirteen papers reporting ?ndings from empirical studies published\ud between 2001 and 2012 were included in the review. The majority of\ud papers (n = 9) had a qualitative design. The analysis highlighted the use\ud of multiple sources of information in decision-making about services and\ud in particular the importance of informal sources and extended social\ud networks in accessing information. There is limited awareness and use of\ud ‘of?cial’ and online information sources. Service users or family carers\ud place greater emphasis on general information and structural indicators.\ud Clinical or quality-of-life outcomes are often dif?cult to interpret and\ud apply. Trust emerged a key issue in relation to quality information.\ud Experiential and subjective information is highly valued and trusted.\ud Various barriers to the effective use of quality information in making\ud choices about services are identi?ed. Implications for policy and future\ud research are discussed.

Purpose – The purpose of this paper is to reflect on Vesala et al.'s (2014) findings on the occupational identity of staff and attitudes towards institutional closure. Design/methodology/approach – This commentary reviews some of the research around staffing, organisational hygiene and service management in countries that have already implemented deinstitutionalisation, and draws out some key considerations for countries and organisations that are planning the transition from institutions to community-based care. Findings – There is increasing evidence around approaches that are more likely to lead to positive service user and staff outcomes. Particularly person-centred active support and practice leadership have emerged as effective approaches in facilitating organisational change and high-quality services. Originality/value – Some of the experiences and practices in post-deinstitutionalisation countries around active support and practice leadership can provide valuable considerations for planning institutional closure programmes in countries currently implementing deinstitutionalisation.

PurposeThe purpose of this paper is to provide a commentary on the previous paper in this issue “Changes in the provision of residential care for adults with an intellectual disability: a national longitudinal study”.Design/methodology/approachThe commentary outlines some of the challenges and potential drivers of deinstitutionalisation and community living including the United Nation's Convention on the Rights of Persons with Disabilities.FindingsThe paper finds that the UN Convention and the practice of international organisations that fund investments in social care can potentially drive the replacement of institutions with community‐based services for people with intellectual disabilities.Originality/valueThe argument for deinstitutionalisation and community living needs to be maintained more broadly rather than being focused on certain countries or regions. Community living for people with intellectual disabilities should be a global agenda with an emphasis on the human rights of people.