Ageing, Health, and Social Care: The meaningful engagement of autistic people with learning disabilities in supported living services in Scotland

老龄化、健康和社会关怀：苏格兰有学习障碍的自闭症患者有意义地参与支持性生活服务

• 批准号: AH/X012573/1
• 负责人: Mary Stewart
• 金额: $ 6.45万
• 依托单位: Heriot-Watt University
• 依托单位国家: 英国
• 项目类别: Research Grant
• 财政年份: 2023
• 资助国家: 英国
• 起止时间: 2023 至 无数据
• 项目状态: 未结题
• 来源: https://gtr.ukri.org/projects?ref=AH%2FX012573%2F1
• 关键词: Ageing; Health; Social; Care; meaningful

Older autistic people with learning disabilities are not having their human rights met. There are inequalities in health and social care provision. Autistic people with learning disabilities are rarely involved with the design of services, but rather, services which are designed for non-autistic people are offered. Autistic people are increasingly using a range of media to have their views heard. There is a growing movement which rejects the medical/deficit model of autism, a model which suggests that the autistic person requires 'fixing' or 'training' to meet the 'typical' norm. This can lead to the autistic person being labelled as abnormal, stigmatised, and potentially excluded from society. Models are evolving such as human rights-based models focusing on inclusive practices and understanding the lived experience of the autistic person to design and develop services. Human rights implementation is a process and does not occur overnight. Part of that process will be to ensure that autistic people with learning disability are part of the decision-making process regarding service provision as they age and their lived experiences can direct and shape health and social care so that they can age well. The project aims to use film and art to support autistic people with learning disabilities direct the discussion in relation to planning and designing care provision as they age. By using these creative methods, we aim to support autistic people with learning disabilities to direct a discussion around what happy and health ageing looks like for them, to understand the impact of these discussions on others, and to raise awareness and support discussion with providers and the wider public.The project will have three main activities. The first will be to create a documentary film which will be led by a team of autistic filmmakers. Autistic people with learning disabilities (aged 55+) will be interviewed by the autistic interviewer on the experience of ageing in supported living services. Adapted and individualised interview methods will be used, allowing for a focus on visual cues and alternative means of communication.The second activity will involve showing the film within supported workshops. One will be online, and one will be face to face. The film will be used to help initiate a dialogue around ageing, aspirations, concerns, and care provision for older autistic adults in supported living arrangements. Autistic adults with learning disabilities and care providers will be asked to contribute. There will be a "wall" /canvas similar to a graffiti wall upon which participants can add to the dialogue. Participants can contribute directly to the "wall" themselves or can be supported to contribute by an artist. To allow all contributors time to process the discussions, there will be the facility to send in contributions after the event (e.g. by sending in a comment, photograph, or drawing). These will be collated by the research team, and the artist will add these to the visual record. The third activity will involve sharing the film and artwork across Scotland in a range of venues both online and in person with service providers, policy makers and the wider public.We aim to understand the impact of engaging with the project and the activities on communities through a process of monitoring and evaluation. For instance, service providers and policy makers may desire to adapt their services and service provision, and the wider public may become more aware, and knowledgeable about older autistic people with learning disabilities and their aspirations for ageing well.We will communicate the findings of the project through the documentary film, the artwork, as well as a film which will document the process of creating the documentary film (like an "out-takes" film). We will produce academic journal articles and present the findings to relevant communities including academic, health and social care, and policy makers.

有学习障碍的老年自闭症患者的人权没有得到满足。在提供保健和社会护理方面存在不平等。有学习障碍的自闭症患者很少参与服务的设计，而是提供为非自闭症患者设计的服务。自闭症患者越来越多地使用各种媒体来表达他们的观点。有一个日益增长的运动，拒绝自闭症的医学/缺陷模型，一个模型，这表明自闭症患者需要“修复”或“训练”，以满足“典型”的规范。这可能会导致自闭症患者被贴上不正常的标签，被污名化，并可能被社会排斥。各种模式正在演变，例如注重包容性做法和了解自闭症患者的生活经验的基于人权的模式，以设计和开发服务。人权的落实是一个过程，不会一蹴而就。这一进程的一部分将是确保有学习障碍的自闭症患者在他们年老时参与有关服务提供的决策过程，他们的生活经历可以指导和塑造健康和社会护理，使他们能够健康地度过晚年。该项目旨在利用电影和艺术来支持有学习障碍的自闭症患者，引导讨论如何规划和设计随着他们年龄的增长而提供的护理。通过使用这些创造性的方法，我们的目标是支持有学习障碍的自闭症患者围绕他们的幸福和健康老龄化进行讨论，了解这些讨论对其他人的影响，并提高认识和支持与供应商和更广泛的公众进行讨论。该项目将有三个主要活动。第一个是制作一部纪录片，由一个自闭症电影制作人团队领导。有学习障碍的自闭症患者（55岁以上）将接受自闭症访谈员的访谈，了解在辅助生活服务中的老龄化经历。将采用适应性和个性化的采访方法，重点关注视觉线索和替代沟通手段。第二项活动将包括在支持的研讨会上放映电影。一个在线，一个面对面。这部电影将被用来帮助启动围绕老龄化，愿望，关注和照顾老年自闭症成年人的支持生活安排的对话。患有学习障碍的自闭症成年人和护理提供者将被要求做出贡献。将有一堵类似于涂鸦墙的“墙”/画布，参与者可以在上面添加对话。参与者可以自己直接为“墙”捐款，也可以得到艺术家的支持。为了让所有贡献者有时间处理讨论，活动结束后将提供发送贡献的设施（例如，通过发送评论、照片或绘图）。这些将由研究团队整理，艺术家将把这些添加到视觉记录中。第三项活动将涉及在苏格兰各地与服务提供商、政策制定者和更广泛的公众在线或面对面分享电影和艺术品。我们的目标是通过监测和评估过程了解参与项目和活动对社区的影响。例如，服务提供者和政策制定者可能希望调整他们的服务和服务提供，而更广泛的公众可能会更多地了解和了解患有学习障碍的老年自闭症患者及其对老年生活的期望。我们将通过纪录片，艺术品，以及一部记录制作纪录片过程的影片（如"out-takes"影片）。我们将制作学术期刊文章，并将研究结果提交给相关社区，包括学术，卫生和社会保健以及政策制定者。