Community reintegration for people with psychiatric disabilities: challenging systemic barriers to service provision and public policy through participatory action research

People with psychiatric disabilities represent a growing group within the population of nursing home residents in the USA. Despite a preference for living in community‐based settings, the availability of supportive services for community living is hindered by barriers at both the service provision and public policy levels. Therefore, understanding and responding to the community living and participation needs of people with psychiatric disabilities is a highly relevant area for action research. This paper discusses a participatory action research endeavor carried out in collaboration with key personnel at Centers for Independent Living who work to provide community reintegration services for individuals with psychiatric disabilities. The events of this 15 month partnership are extensively described, analyzed and discussed. Findings reflect the critical need for communication, dialogue and action to support people with psychiatric disabilities in the community.     

Caring for people with intellectual disabilities in poor rural communities in Cambodia: experience from ADD International

The burden of care for a disabled relative traditionally falls on women: mothers, wives, sisters. In Cambodia, Khmer culture is strongly structured around the family unit within which both the role of women and discrimination towards people with disabilities are sanctioned by social hierarchy, perceptions of weakness, and the concept of karmic merit. This article explores the impact of ADD International's project in Cambodia to support people with ‘intellectual disabilities’ – that is, learning disabilities – and aims to assess how this work affected carers, the majority of whom were women.     

Political and economic determinants of expenditure on day services for persons with intellectual disabilities or autism

This study investigates whether the Swedish national entitlement legislation, which is known to be one of the most developed in Europe for persons with intellectual disabilities or autism, accomplishes its aim to provide equal quality of day services independent of location. We estimated a reduced-form model of demand and supply-side determinants of a latent quality variable for day-service programmes using panel data on expenditure per attendee for the 290 Swedish municipalities 2004–2012. We found that expenditure per attendee is among others affected by changes of the local tax base and outcome in elections to the local assemblies. These results imply that rights of persons with intellectual disabilities with regard to equal quality of day services independent of where they live are not fully honoured in budget allocation decisions made by local governments.     

The Emergence and Attributes of Second-Generation Community Support Systems for Persons with Serious Mental Illness

Abstract

This paper examines the original model of community support for people coping with psychiatric disabilities and illuminates four emergent factors that are bringing about what the author identifies as second-generation community support systems. The author discusses the important role of recovery in refraining the purpose and aims of second-generation community support systems and draws implications for how case management can function within these systems to make them more responsive to recipients.     

Community orientation of services for persons with a psychiatric disability. Comparison between Estonia,Hungary and the Netherlands

This article explores the way mental health services and social services are orientated on assisting people with a psychiatric disability to participate in different areas of community life. A large research project about community participation in three different countries (Estonia, Hungary and the Netherlands) confirms the findings of other studies that – regardless of geographical location – people with a psychiatric disability have difficulty fulfilling social roles in the community. They are often faced with fewer opportunities than other citizens, due to their health problems, stigma, discrimination and poverty [World Health Organisation. (2011). World report on disability. Geneva: WHO]. An important objective of social work is to help people find their way in society. Surprisingly enough, in all three countries, most social workers are mainly focused on solving individual problems, and not on community participation. Shifting the focus starts by having a clear awareness of the notion of community participation. Social workers have to work both on supporting individuals to find their way in the community (individual support), and on supporting social networks in the community to accommodate persons with a disability on the basis of equal and valued citizenship (community support).     

Learning how to be (a) patient: visual analysis of accessible health information leaflets for people with intellectual disabilities

Creation of jargon-free Easy Read health texts, incorporating carefully chosen words and images, is promoted as a way of removing health access barriers for people with intellectual disabilities. Using a social semiotic framework, this article explores the social construction of the patient with intellectual disabilities within a sample of adapted health texts, focusing on the visual images used. Images were coded and analysed according to dimensions suggested by Kress and van Leeuwen’s work on ‘visual grammar’. Images highlight the inclusion of patients with intellectual disabilities in mainstream healthcare settings. However, these patients are depicted as being inserted into somewhat idealized healthcare routines that are pre-determined and micro-managed through to completion. Consideration of risks and choices associated with healthcare use are downplayed. The article concludes that the care of patients with intellectual disabilities continues to constitute potential trouble for mainstream healthcare providers, rather than being an expected aspect of everyday practice.     

Voting barriers and solutions: the experiences of people with disabilities during the Dutch national election in 2017

Exercising the right to vote at elections is frequently denied to people with disabilities. In this study, we examined the voting behaviour of individuals with physical or learning impairments and the barriers they encountered during the national elections in 2017 in the Netherlands. A survey design was chosen to allow large-scale questioning of both target groups. Over 90% of people with physical impairments voted and respondents found that voting was accessible. Voter turnout among people with learning impairments was much lower (46%). They experienced difficulty to prepare themselves and at the polling station. The Netherlands seems well on the way to achieving an inclusive environment for people with physical impairments. Recommendations are given about accessibility for all and for exploring alternative methods of voting such as proxy voting and tailoring information and procedures to the needs of people with learning impairments.     

Living on a knife edge: the responses of people with physical health conditions to changes in disability benefits

Abstract

This article documents the experiences of people with a physical health condition or disability who have experienced a loss of or change in disability benefits under the welfare reform programme in the United Kingdom. A theoretical model was constructed using in-depth interviews and grounded theory methods. The findings show that participants experienced the benefits system as dehumanising, and felt that they lived in a judgemental and invalidating society, where they were perceived as ‘scroungers’ and faced discrimination from others. These experiences negatively affected their mental and physical health and well-being. They also negatively affected participants’ identity, leading to experiences of shame, hopelessness and social isolation. However, many participants attempted to resist these negative impacts (e.g. through seeking support or taking political action). The findings demonstrate the significant impact of benefit changes on well-being and identity, thus highlighting important implications for claimants, and staff in healthcare, the benefits system and government.     

Social support,the presence of barriers and ideas for the future from students with disabilities in the higher education system in Croatia

This paper examines how students with disabilities in Croatia perceive support, experience barriers and propose ways forward for equality of opportunities in the higher education system. In qualitative interviews, students were satisfied with the informal support they received from family and friends but dissatisfied with the formal support they received from universities and the government. Obstacles to inclusion included: inadequate transport and finance to attend university and minimal adaptation of buildings, toilets, lifts, classrooms and dormitories. Students proposed: investment in adapting buildings, personal assistants, educational grants and transport; coordination within the formal systems from national government to universities and non-governmental organisations; and measures to increase disability awareness for academics, professionals and other students within higher education. The situation for students with disabilities in Croatia is a reminder for those working in countries where policy and practice is relatively advanced that many disability battles are still to be won in newer nations.     

‘..It takes a lot of brain space’: Understanding young carers’ lives in England and the implications for policy and practice to reduce inappropriate and excessive care work

This qualitative study, undertaken in England, explored young carers’ perspectives on the nature of their caring responsibilities. The findings are significant, particularly in the context of England's Care Act 2014, which seeks to prevent children engaging in ‘excessive’ or ‘inappropriate’ caring. Our research placed children at the heart of the debate on what constitutes appropriate care. The findings raise key questions regarding effective implementation of contemporary child policy, duties of care towards children in caring roles and priorities for child protection and family support policy and practices, with the potential to inform thinking around child's well-being in wider contexts.     

“We believe in you,like really believe in you”: Initiating a realist study of (re)engagement initiatives for youth not in employment,education or training with experiences from northern Sweden

Due to a scarcity of rigorous evaluations and to commence a realist study addressing the lack of knowledge about the workings of interventions directed towards "NEET" youth, this research aimed to understand how and under what circumstances (re)engagement initiatives are expected to facilitate the social integration of young people who are in a situation that prevents them from entering into studies or work. By conducting the first phase in realist evaluation, qualitative interviews with five managerial stakeholders from two northern Swedish initiatives and reviews of documents were carried out for data collection. Using thematic analysis and retroductive reasoning, an intervention-context-actors-mechanisms-outcomes configuration was developed to elicit an initial programme theory that explained how the initiatives were presumed to operate and under what contextual contingencies. The results indicate that the intervention is expected to improve the youths’ wellbeing and engage them in work or studies by strengthening their competence and confidence in a caring and collaborative context. To incorporate the diverse voices and heterogeneous experiences of youth themselves, and ascertain whether the intervention works as intended, for whom, in what conditions and why, the results now need to be tested in selected cases and refined in subsequent phases of evaluation research.     

Space,People, Interventions and Time (SPIT): A Model for Understanding Children's Outdoor Play in Post‐Disaster Contexts Based On a Case Study from the Triple Disaster Area of Tohoku in North‐East Japan

Play in the outdoor environment is important for children as part of their childhood and is particularly important for children in a post‐disaster situation. This article explores issues around outdoor play opportunities in the Tohoku region of north‐east Japan, 13 months after the triple disaster of earthquake, tsunami and nuclear power plant failure. A model of space, people, interventions and time (SPIT) is used to understand the situation in this unique case study.