Disability & Society最新文献

英文中文

Progress on deinstitutionalisation and the development of community living for persons with disabilities in Europe: Are we nearly there? 欧洲残疾人去机构化和社区生活发展的进展:我们快到了吗?

IF 2.4 2区社会学 Q2 REHABILITATION

Disability & Society

Pub Date : 2022-05-30 DOI: 10.1080/09687599.2022.2071676

Jan Šiška, J. Beadle‐Brown

Abstract Following the publication of the UN Convention on the Rights of Persons with a Disability, the rights and situation of people with disabilities have once again become a focus of national, European and international policy and advocacy. Mansell et al., (2007) identified that there were over 1million people with disabilities in Europe living in institutions of over 30 places in size and almost 1.4 million in some form of residential care. This paper reports findings from a review of national and international sources of data on living situation for 27 European countries as of 2019. Although there had been some changes, especially for children and especially in countries where EU structural funds had been used, there were still 1.4 million people living in residential care, with many still for more than 30 people. People with intellectual and developmental disabilities were those who were most likely to still be in residential services. We consider some of the potential reasons for these findings and discuss what might be needed to really advance deinstitutionalisation. Point of interest People with disabilities have the same rights as everyone else to live in the community. This paper looks at where people with disabilities live and how this has changed over time. We found that many people with disabilities still live in institutions and that the number had not changed much since 2007. There have been more changes for children than adults. Fewer children now live in institutions. People with intellectual disabilities are most likely to still live in institutions and least likely to be living and participating in the community. Many countries in Europe still do not have good information about where people with disabilities live and whether they have choice and control or are active citizens. There was more change in countries which had received money from the European Union. However, in many countries, there were no plans for how to help more people to live in the community.

摘要《联合国残疾人权利公约》发表后，残疾人的权利和处境再次成为国家、欧洲和国际政策和宣传的焦点。Mansell等人（2007年）发现，欧洲有超过100万残疾人居住在30多个地方的机构中，近140万人接受某种形式的寄宿照顾。本文报告了对截至2019年27个欧洲国家生活状况的国家和国际数据来源的审查结果。尽管发生了一些变化，特别是在儿童方面，尤其是在使用了欧盟结构性基金的国家，但仍有140万人居住在养老院，其中许多人仍有30多人。有智力和发育障碍的人最有可能仍在寄宿服务中。我们考虑了这些发现的一些潜在原因，并讨论了真正推进去机构化可能需要什么。利益点残疾人与其他人一样享有在社区生活的权利。本文着眼于残疾人的居住地，以及随着时间的推移，这种情况是如何变化的。我们发现，许多残疾人仍然生活在机构中，自2007年以来，这一数字没有太大变化。儿童的变化比成年人大。现在住在收容机构的儿童越来越少。智障人士最有可能仍然生活在机构中，而最不可能生活和参与社区。欧洲许多国家仍然没有关于残疾人生活在哪里以及他们是否有选择权和控制权或是积极的公民的良好信息。从欧盟获得资金的国家发生了更多变化。然而，在许多国家，没有计划如何帮助更多的人生活在社区中。

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引用次数: 5

Announcement of doctoral theses 博士论文公告

IF 2.4 2区社会学 Q2 REHABILITATION

Disability & Society

Pub Date : 2022-05-28 DOI: 10.1080/09687599.2022.2072586

引用次数: 0

‘… they had interpreted “disability” as referring to a patently visible disability’: experience of a patient group with NICE “……他们把‘残疾’解释为明显可见的残疾:NICE患者群体的经历。

IF 2.4 2区社会学 Q2 REHABILITATION

Disability & Society

Pub Date : 2022-05-04 DOI: 10.1080/09687599.2022.2060804

J. Barman-Aksözen, F. Granata, M. Aksözen, Cornelia Dechant, R. Falchetto

Abstract Erythropoietic protoporphyria (EPP) is an ultra-rare genetic disorder characterised by intolerance to visible light. Starting in early childhood, people with EPP suffer from social isolation, impaired educational and occupational opportunities, and low quality of life. Afamelanotide is the only effective and approved therapy for EPP. In England, its cost-effectiveness is currently assessed by the National Institute for Health and Care Excellence (NICE), which in 2018 issued a negative recommendation for funding. Stakeholder organisations, including our patient organisation, submitted appeals against the recommendation, which were upheld in all possible grounds. Moreover, the appeal panel expressed concerns about whether the evaluating committee discriminated against people with EPP and suggested that it seek guidance regarding the Equality Act 2010. However, three years later, the identified issues have not been addressed and patients in England remain without treatment. Afamelanotide represents another example for the trend towards a loss of fairness in NICE decisions.

摘要红细胞生成性原卟啉（EPP）是一种极其罕见的遗传病，其特征是对可见光不耐受。从儿童早期开始，EPP患者就遭受社会孤立、教育和职业机会受损以及生活质量低下的折磨。阿法美拉诺肽是唯一有效且经批准的EPP治疗方法。在英格兰，其成本效益目前由国家健康与护理卓越研究所（NICE）进行评估，该研究所于2018年发布了负面的资金建议。利益相关者组织，包括我们的患者组织，对该建议提出了上诉，并以各种可能的理由予以支持。此外，上诉小组对评估委员会是否歧视EPP患者表示关切，并建议其寻求有关《2010年平等法》的指导。然而，三年后，已确定的问题仍未得到解决，英格兰的患者仍然没有得到治疗。Afamelanotide代表了NICE决策中失去公平性的趋势的另一个例子。

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引用次数: 2

Poverty alleviation for people with disabilities in China: policy, practice, exclusionary effects, and ways forward 中国残疾人扶贫：政策、实践、排斥效应和前进道路

IF 2.4 2区社会学 Q2 REHABILITATION

Disability & Society

Pub Date : 2022-04-25 DOI: 10.1080/09687599.2022.2065464

Yuan Wang, C. Qi, Yu-hong Zhu

Abstract Adopting an approach that differs from practices in other countries, China has made many achievements in reducing poverty for people with disabilities using two successful types of policies and a unique political mobilization mechanism. However, inconsistencies between the policies and their implementation in the Chinese policy environment has produced new exclusionary effects, hindering the process of social integration for people with disabilities. These obstacles need to be addressed.

摘要中国采取了不同于其他国家的做法，通过两种成功的政策和独特的政治动员机制，在减少残疾人贫困方面取得了许多成就。然而，这些政策与其在中国政策环境中的实施之间的不一致产生了新的排斥效应，阻碍了残疾人的社会融合进程。这些障碍需要解决。

引用次数: 4

Volunteering and the response to COVID-19 in the UK 英国的志愿服务和应对COVID-19

IF 2.4 2区社会学 Q2 REHABILITATION

Disability & Society

Pub Date : 2022-04-24 DOI: 10.1080/09687599.2022.2067469

R. Fish, R. Hibbin, Cheryl Simmill-Binning

Abstract This article provides an insight into the voluntary sector’s response to the COVID-19 pandemic in one UK region, using qualitative evidence from a rapid evaluation study with leaders of volunteer agencies. We picked out the information relevant to services that disabled people access, as a way to provide a snapshot of the issues experienced during the various lockdowns, as well as participants’ concerns for the future of volunteering in the UK.

摘要本文利用来自志愿者机构领导人的快速评估研究的定性证据，深入了解了英国一个地区志愿部门对新冠肺炎大流行的反应。我们挑选了与残疾人获得的服务相关的信息，以提供各种封锁期间所经历问题的快照，以及参与者对英国志愿服务未来的担忧。

引用次数: 1

Livestreaming: exploring the obstacles and possibilities of digital usage for people with disabilities 直播：探索残疾人数字使用的障碍和可能性

IF 2.4 2区社会学 Q2 REHABILITATION

Disability & Society

Pub Date : 2022-04-20 DOI: 10.1080/09687599.2022.2065465

Zhongxuan Lin, Jiawen Tang, Heng Hui

Abstract The rapid development of information and communication technology (ICT) has had increasing influence, both positive and negative, on people with disabilities. How does ICT impact people with disabilities and what are the subjective experiences, feelings, attitudes, and understanding of people with disabilities under this influence? To address these questions, we conducted experiential and experimental research – one of the authors, Hui Heng, a visually impaired person, conducted a total of ten livestreams of his daily commute – to explore and experience vividly the obstacles and opportunities of ICT usage in a creative way. We argue that this experiential and experimental livestreaming demonstrates people with disabilities’ right to be seen and people without disabilities’ right to observe and recognize the diversity of our society.

摘要信息和通信技术的快速发展对残疾人产生了越来越大的积极和消极影响。信息和通信技术如何影响残疾人？在这种影响下，残疾人的主观体验、感受、态度和理解是什么？为了解决这些问题，我们进行了体验和实验研究——作者之一、视障人士惠恒对他的日常通勤进行了总共十次直播——以创造性的方式生动地探索和体验ICT使用的障碍和机会。我们认为，这种体验式和实验性的直播展示了残疾人被看到的权利，以及非残疾人观察和认可我们社会多样性的权利。

引用次数: 0

Announcement of doctoral theses 博士论文公告

IF 2.4 2区社会学 Q2 REHABILITATION

Disability & Society

Pub Date : 2022-04-13 DOI: 10.1080/09687599.2022.2059836

引用次数: 0

A call to collect and analyse recordings of personal independence payment assessments 呼吁收集和分析个人独立付款评估记录

IF 2.4 2区社会学 Q2 REHABILITATION

Disability & Society

Pub Date : 2022-04-11 DOI: 10.1080/09687599.2022.2060805

J. Webb, Saul Albert

Abstract Recent UK policy changes enable claimants to record their Personal Independence Payment (PIP) assessments, presenting an opportunity to study how they are produced interactionally. Disabled people have often reported feeling disempowered by PIP assessments, and these assessments are notoriously inaccurate – the vast majority are overturned in the claimants’ favour upon appeal. Given the quality of claimants’ lives often depends on their outcome, it is urgent to learn how the assessment process yields so many successful appeals. Here we analyse a small sample of one PIP assessment recording, uploaded to YouTube by the claimant, to show the importance of understanding these high-stakes interactional situations. We intend for this to show the importance of looking at the interactional detail of PIP assessments, which have hitherto been hidden from scrutiny because of the difficulty of obtaining recordings of assessments.

最近英国的政策变化使索赔人能够记录他们的个人独立付款(PIP)评估，提供了一个机会来研究他们是如何产生互动的。残疾人经常报告说，他们被PIP评估剥夺了权力，而这些评估是出了名的不准确——在上诉时，绝大多数评估都被推翻了，有利于索赔人。鉴于索赔人的生活质量往往取决于他们的结果，迫切需要了解评估过程如何产生如此多的成功上诉。在这里，我们分析了一个PIP评估记录的小样本，由索赔人上传到YouTube上，以显示理解这些高风险互动情况的重要性。我们打算这样做是为了表明研究和平执行方案评估的相互作用细节的重要性，由于难以获得评估记录，这些评估迄今未受到审查。

引用次数: 0

Ataxia and me – living within a neurological hierarchy 共济失调和我——生活在神经系统中

IF 2.4 2区社会学 Q2 REHABILITATION

Disability & Society

Pub Date : 2022-04-09 DOI: 10.1080/09687599.2022.2034110

Tallulah Clark

Abstract By its very nature, the term Neurodiversity promotes the concept of biodiversity, the wonderful realm of neurocognitive functioning. Why is it that a paradigm that sets out to celebrate and give voice to those belonging to the neurodiverse community ostensibly silences those with rarer conditions? Having a rare neurological condition often intrinsically means living within the neurodiverse community alongside those with more prevalent ailments yet simultaneously living diametrically opposed. More uncommon and misunderstood manifestations are often demonised and condemned as they deviate from what society deems as normal. The neurodiverse community has been limited to those with more prevalent and understood illnesses due to a lack of awareness surrounding other neurological disorders such as ataxia. This article questions the presence of a hierarchy within the neurodiverse community highlighting how it can often exacerbate feelings of inadequacy and shame for those with rarer conditions.

摘要从本质上讲，“神经多样性”一词促进了生物多样性的概念，即神经认知功能的奇妙领域。为什么一种旨在庆祝和表达神经多样性群体成员声音的范式表面上让那些患有罕见疾病的人沉默了？患有罕见的神经系统疾病通常本质上意味着与那些患有更常见疾病的人一起生活在神经多样性的社区中，但同时又截然相反。更不常见和被误解的表现往往被妖魔化和谴责，因为它们偏离了社会认为的正常。由于缺乏对共济失调等其他神经系统疾病的认识，神经多样性群体仅限于那些患有更普遍和更容易理解的疾病的人。这篇文章质疑神经多样性群体中存在的等级制度，强调它如何经常加剧那些患有罕见疾病的人的不足感和羞耻感。

引用次数: 0

Plasma and CSF NfL are differentially associated with biomarker evidence of neurodegeneration in a community-based sample of 70-year-olds. 在一个以社区为基础的 70 岁样本中，血浆和脑脊液 NfL 与神经退行性变的生物标志物证据存在不同的关联。

IF 1.9 2区社会学 Q2 REHABILITATION

Disability & Society

Pub Date : 2022-03-05 eCollection Date: 2022-01-01 DOI: 10.1002/dad2.12295

Anna Dittrich, Nicholas J Ashton, Henrik Zetterberg, Kaj Blennow, Joel Simrén, Fiona Geiger, Anna Zettergren, Sara Shams, Alejandra Machado, Eric Westman, Michael Schöll, Ingmar Skoog, Silke Kern

Neurofilament light protein (NfL) in cerebrospinal fluid (CSF) and plasma (P) are suggested to be interchangeable markers of neurodegeneration. However, evidence is scarce from community-based samples. NfL was examined in a small-scale sample of 287 individuals from the Gothenburg H70 Birth cohort 1944 study, using linear models in relation to CSF and magnetic resonance imaging (MRI) biomarker evidence of neurodegeneration. CSF-NfL and P-NfL present distinct associations with biomarker evidence of Alzheimer's disease (AD) pathology and neurodegeneration. P-NfL was associated with several markers that are characteristic of AD, including smaller hippocampal volumes, amyloid beta (Aβ)₄₂, Aβ_42/40, and Aβ₄₂/t-tau (total tau). CSF-NfL demonstrated associations with measures of synaptic and neurodegeneration, including t-tau, phosphorylated tau (p-tau), and neurogranin. Our findings suggest that P-NfL and CSF-NfL may exert different effects on markers of neurodegeneration in a small-scale community-based sample of 70-year-olds.

脑脊液（CSF）和血浆（P）中的神经丝蛋白（NfL）被认为是神经变性的可互换标记物。然而，来自社区样本的证据却很少。在哥德堡 H70 出生队列 1944 研究的 287 个小规模样本中，使用线性模型对 NfL 与 CSF 和磁共振成像（MRI）生物标志物神经变性证据的关系进行了研究。CSF-NfL和P-NfL与阿尔茨海默病（AD）病理和神经变性的生物标志物证据存在不同的关联。P-NfL与一些具有阿尔茨海默病特征的标记物相关，包括海马体积较小、淀粉样β（Aβ）42、Aβ42/40和Aβ42/t-tau（总tau）。CSF-NfL与突触和神经退行性变的测量结果有关，包括t-tau、磷酸化tau（p-tau）和神经粒蛋白。我们的研究结果表明，P-NfL和CSF-NfL可能会对基于社区的小规模70岁样本中的神经变性指标产生不同的影响。

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引用次数: 0

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