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This collection of original essays, from both established scholars and newcomers, takes up a recent debate in philosophy, sociology, and disability studies on whether disability is intrinsically a harm that lowers a person's quality of life. While this is a new question in disability scholarship, it also touches on one of the oldest philosophical questions: what is the good human life? Historically, philosophers have not been interested in the topic of disability, and when they are it is usually only in relation to questions such as euthanasia, abortion, or the moral status of disabled people. Consequently disability has been either ignored by moral and political philosophers or simply equated with a bad human life, a life not worth living. This collection takes up the challenge that disability poses to basic questions of political philosophy and bioethics, among others, by focusing on fundamental issues and practical implications of the relationship between disability and the good human life

The right to access and benefit from health related rehabilitation is firmly grounded in several international human rights documents including among others in the Convention on the Rights of Persons with Disabilities which requires States to "…organize, strengthen and extend comprehensive habilitation and rehabilitation services and programmes, particularly in the areas of health…". This pronouncement presents new challenges at the level of policy design and service development but also for evaluation. Documented disparities in access to rehabilitation and the increasing demand for public accountability exert pressure upon health systems to assess progress in fulfilling their commitments under international human rights law. Human rights however is a vague concept, capable of multiple interpretations and its evaluation is therefore problematic not only for those involved in monitoring and evaluation but also for health professionals who may have a limited understanding of how human rights can be applied in patients care. This presentation discusses the tripartite duty of States to organize, strengthen and extend comprehensive rehabilitation services and programmes and proposes an evaluation framework. It is informed by and extends a previous analysis of the legal provisions contained in the Disability Convention with respect to rehabilitation and espouses a contemporary person-centered approach to rehabilitation care. The rights based framework is intended to inform future research on the development of relevant metrics and indicators to improve human rights monitoring and reporting.

Background: The rising prevalence of disability due to noncommunicable diseases and the aging process in tandem with under-prioritization and underdevelopment of rehabilitation services remains a significant concern for European public health. Over recent years, health system responses to population health needs, including rehabilitation needs, have been increasingly acknowledging the power of law and formal written policies as strategic governance tools to improve population health outcomes. However, the contents and scope of enacted legislation and adopted policies concerning rehabilitation services in Europe has not been synthesized. This paper presents a concise overview of laws and policies addressing rehabilitation in five European countries. Methods: Publicly available laws, policies, and national action plans addressing rehabilitation issues of Sweden, Italy, Germany, the Netherlands and the United Kingdom were reviewed and descriptive documents analyzed. Actions found in national health policies were also evaluated for compliance with the key recommendations specified in the World Health Organization's Rehabilitation 2030: Call for Action. Results: Across countries, legal and policy approaches to rehabilitation planning varied in scope and reach. While all countries entitle citizens to rehabilitation services, comprehensiveness of coverage varied. Health legislation of Germany and Netherlands recognizes access to rehabilitation as a human right for persons with disabilities, while Sweden and the United Kingdom acknowledge its importance in disability laws for achieving substantive equality for persons with disabilities. Regarding policies, in all countries but Italy, targeted universalism remains the predominant strategy governing rehabilitation services, as demonstrated by the lack of comprehensive, national action plans for rehabilitation addressing the general population. Nevertheless, references found in disease specific policies indicate a solid consensus that rehabilitation remains an integral ...

AbstractThis brief report proposes strategies to support qualitative research with people with intellectual disabilities on topics related to death and dying. We prepared a scoping review on methodological approaches used for qualitative research on death and dying involving participants with intellectual disabilities and a study on perceived barriers and facilitators to accessing end of life settings, conducted with co‐researchers on an online video communication platform. Through conducting these two studies, we found three strategies that we believe will increase the uptake of this research for policymakers, funding bodies and other researchers. The strategies concern research agendas, structured methodological guidance, and allocation of funds. When planning out qualitative research projects about death and dying topics, people with intellectual disabilities must be on the research agendas on topics related to death and dying. To realize this obligation, stakeholders would benefit from structured methodological guidance. The design, planning, and conduct of such studies would benefit greatly from such guidance and would ideally result in the uptake of this type of research. Additionally, proper funding taking into account needed but time‐consuming accommodations for participants is necessary. These strategy options aim to increase the amount of qualitative research that includes people with intellectual disabilities as participants.

Globally, disability represents a major challenge for health systems and contributes to the rising demand for rehabilitation care. An extensive body of evidence testifies to the barriers that people with disabilities confront in accessing rehabilitation services and to the enormous impact this has on their lives. The international legal dimension of rehabilitation is underexplored, although access to rehabilitation is a human right enshrined in numerous legal documents, specifically the Convention on the Rights of Persons with Disabilities. However, to date, no study has analyzed the implications of the Convention for Rehabilitation Policy and Organization. This article clarifies states' obligations with respect to health-related rehabilitation for persons with disabilities under the Convention. These obligations relate to the provision of rehabilitation but extend across several key human right commitment areas such as equality and nondiscrimination; progressive realization; international cooperation; participation in policymaking processes; the accessibility, availability, acceptability, and quality of rehabilitation services; privacy and confidentiality; and informed decision making and accountability. To support effective implementation of the Convention, governments need to focus their efforts on all these areas and devise appropriate measures to monitor compliance with human rights principles and standards in rehabilitation policy, service delivery, and organization. This article lays the foundations for a rights-based approach to rehabilitation and offers a framework that may assist in the evaluation of national rehabilitation strategies and the identification of gaps in the implementation of the Convention.

AbstractBackgroundPeople with intellectual disabilities are often left out of research on important topics. This exploratory study investigated their views on barriers and facilitators to accessing care at end of life, both at home and in a hospice setting.MethodThis qualitative study used reflexive thematic analysis. Two focus groups were held via Zoom with a total of four participants.ResultsThree themes were produced: Unsettling Transitions, Maintaining Familiarity, and Respecting People's Wishes. Keeping things as unchanged as possible at end of life was highlighted as an ideal. Respecting people's wishes and education were highlighted as facilitators to good end of life care.ConclusionsThe themes identified in this study highlight the fears and wishes of this population with regards to receiving quality end of life care. Training for staff and families, as well as advanced care planning, could focus on enhancing facilitators and decreasing barriers for this population.