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Navigating, Feeling and Living 'SEND': Parent and Practitioner Experiences of Raising Autistic Children at a Time of Austerity

导航、感受和生活“发送”：父母和从业者在紧缩时期抚养自闭症儿童的经验

基本信息

批准号：
ES/X005577/1
负责人：
Rosalie Warnock
金额：
$ 12.62万
依托单位：
University of Oxford
依托单位国家：
英国
项目类别：
Fellowship
财政年份：
2022
资助国家：
英国
起止时间：
2022 至无数据
项目状态：
已结题

来源：
https://gtr.ukri.org/projects?ref=ES%2FX005577%2F1
关键词：
Navigating Feeling Living SEND Parent

项目摘要

The aim of this fellowship will be to develop and disseminate the key findings from my doctoral research. Titled Navigating, Feeling and Living 'SEND': Parent and Practitioner Experiences of Raising Autistic Children in a Time of Austerity, my research is geographically novel and politically timely. Drawing on a four-month institutional ethnography with a London borough special educational needs and disability (SEND) team and repeat narrative interviews with 15 parents in the same borough, I have examined how parents of autistic children navigate SEND and social security support, and SEND professionals engage with parents, at a time of austerity. I have shown how austerity impacts on both managers and 'street level bureaucrats' in the SEND system, and on families across the socio-economic spectrum, to evidence what has long been suspected but not proven: that children in different families are unequally placed to access limited SEND services. My research contributes to understandings of austerity, welfare bureaucracies, everyday family life, care, disability, and emotional geographies. My key findings are:1. That everyday life is lived through the welfare services we need to survive. This means that care isn't just a private matter - rather, parents rely on networks of care and support to help them to care for their child/children.2. Not all parents are equally able to access SEND support on behalf of their autistic children. SEND is a universal welfare service (it isn't means-tested) but austerity means resources are limited. Parents have to learn how best to access help, often through trial and error. While all parents work extremely hard to navigate SEND services, they don't start from equal points - which means they don't achieve equal outcomes. Underlying structural and systemic inequalities therefore mean families across the socio-economic spectrum are differentially affected by austerity cuts to SEND services. 3. Emotions matter in encounters between SEND practitioners and parents. I show how, even when practitioners and parents are both trying to stay calm, emotions often still run high. This can influence outcomes, with lasting consequences.4. Parents who care for autistic children are 'parent carers': they are engaged in lots of different kinds of 'work' to look after their child. Their care workload is greater than would typically be expected for a 'neurotypical' child and this requires additional time, effort and mental and physical energy. I argue that parent carers need better state support to manage this.I will use this fellowship to share these key findings with academic audiences (via three single-authored peer reviewed papers, based on my thesis chapters, and conference papers), and via public engagement activities (blog posts, a policy briefing document, video summary, and parliamentary evidence submissions). I will build academic networks by co-organising a conference on 'the geographies of invisible disabilities and everyday care,' presenting at other conferences, and by co-authoring two more papers (one with Jennie Middleton, and one with Dr Morrison, Professor Johnston and Dr Frawley). I will share my findings with academics and members of the public as a visiting researcher to the University of Waikato, NZ, and at Imagine Better (a disability community organisation) in Hamilton, NZ. In doing so, I will forge international research connections and help to start discussions on comparative access to SEND support in the UK and NZ. I will contribute to capacity building amongst junior researchers by running methods training workshops, teaching, and (where appropriate) mentoring. Finally, I will undertake initial participatory scoping research with autism/ADHD family support groups in Oxfordshire, serving as public engagement, public capacity building, and preparation for a Leverhulme grant application.

这个奖学金的目的是发展和传播我的博士研究的关键发现。标题导航，感觉和生活'发送'：在紧缩时期抚养自闭症儿童的父母和从业者的经验，我的研究在地理上是新颖的，在政治上是及时的。利用为期四个月的机构人种志与伦敦自治市特殊教育需求和残疾（SEND）团队，并重复叙事采访15名家长在同一个区，我已经研究了自闭症儿童的父母如何导航SEND和社会保障支持，以及SEND专业人士与父母互动，在紧缩时期。我已经展示了紧缩政策如何影响SEND系统中的管理人员和“街道一级官僚”，以及整个社会经济范围内的家庭，以证明长期以来一直被怀疑但未被证明的事情：不同家庭中的儿童不平等地获得有限的SEND服务。我的研究有助于理解紧缩，福利官僚，日常家庭生活，护理，残疾和情感地理。我的主要发现是：1。每天的生活都是通过我们生存所需的福利服务来度过的。这意味着照料不仅仅是一件私事-相反，父母依靠照料和支持网络来帮助他们照料子女。并不是所有的父母都能平等地代表他们的自闭症儿童获得SEND支持。SEND是一项全民福利服务（它不接受经济状况调查），但紧缩意味着资源有限。父母必须学习如何最好地获得帮助，通常是通过试验和错误。虽然所有的父母都非常努力地浏览SEND服务，但他们并不是从平等的点开始的-这意味着他们没有实现平等的结果。因此，潜在的结构性和系统性不平等意味着社会经济领域的家庭受到紧缩削减SEND服务的不同影响。3.情感在SEND实践者和父母之间的接触中很重要。我展示了，即使练习者和父母都试图保持冷静，情绪往往仍然很高。这可能会影响结果，并产生持久的后果。照顾自闭症儿童的父母是“家长照顾者”：他们从事许多不同的“工作”来照顾他们的孩子。他们的护理工作量比“典型”儿童通常预期的要大，这需要额外的时间，精力和精神和体力。我认为，家长照顾者需要更好的国家支持来管理这一点。我将利用这个奖学金与学术观众分享这些关键发现（通过三个单一作者的同行评审论文，根据我的论文章节，和会议论文），并通过公众参与活动（博客文章，政策简报文件，视频摘要，和议会证据提交）。我将通过共同组织一次关于“隐形残疾和日常护理的地理学”的会议，在其他会议上发表演讲，并共同撰写另外两篇论文（一篇与Mr. Middleton合作，一篇与莫里森博士、约翰斯顿教授和弗劳利博士合作），建立学术网络。我将作为新西兰怀卡托大学和新西兰汉密尔顿的Imagine Better（一个残疾人社区组织）的访问研究员，与学者和公众分享我的发现。在此过程中，我将建立国际研究联系，并帮助开始讨论在英国和新西兰获得SEND支持的比较。我将通过举办方法培训研讨会，教学和（在适当的情况下）指导来促进初级研究人员的能力建设。最后，我将在牛津郡与自闭症/ADHD家庭支持团体进行初步的参与性范围研究，作为公众参与，公共能力建设和Leverhulme赠款申请的准备。