Power Andrew
Institute for Health Research, Bowland Tower East, Lancaster University, Lancashire, UK.
Health Soc Care Community. 2009 Feb;17(1):92-8. doi: 10.1111/j.1365-2524.2008.00807.x. Epub 2008 Sep 17.
The aim of this article is to examine the experiences of families with young adults with learning disabilities trying to access services. The landscape of disability services for this group is made up of day care, special vocational training and respite places. It aims to identify the extent of an implementation gap between government rhetoric and the degree to which services are characterised as being non-supportive interactions on the ground. Using Ireland as a case study, during a time when the economy is booming and government rhetoric claims unparalleled developments in allocating resources and extra respite 'places', this article identifies the main challenges faced by family carers associated with accessing appropriate services for their disabled adult child, in their attempt to achieve greater independence. This article reports the findings of a qualitative study in which individual semistructured interviews were held with family carers (n = 25) and representatives from national carer organisations (n = 6) in Ireland. These were people caring for an adult (18-30 years) with a learning disability and their experiences were also useful in cross-checking the carer organisation interviews. The findings show that there is limited flexibility, choice and availability in meeting the preferences of the service-users, and throughout the study, services were characterised as being non-supportive interactions. This is not simply symptomatic of a lack of resources. Despite improved funding, supportive attitudes and flexibility are still crucial in meeting user requirements at the level of delivery; thus highlighting that often the system works for the system, not for the user.
本文旨在探讨有学习障碍的年轻人的家庭在获取服务方面的经历。为这一群体提供的残疾服务包括日托、特殊职业培训和临时照料场所。其目的是确定政府言论与实际服务之间的实施差距程度,实际服务在很大程度上被视为缺乏支持性的互动。以爱尔兰为案例研究,在经济蓬勃发展、政府宣称在资源分配和额外临时照料“场所”方面取得空前进展的时期,本文确定了家庭照料者在为其残疾成年子女获取适当服务以助其实现更大程度独立的过程中所面临的主要挑战。本文报告了一项定性研究的结果,该研究对爱尔兰的家庭照料者(n = 25)和国家照料者组织的代表(n = 6)进行了半结构化的个人访谈。这些人照料的是一名患有学习障碍的成年人(18至30岁),他们的经历对于核实照料者组织访谈的内容也很有帮助。研究结果表明,在满足服务使用者的偏好方面,灵活性、选择和可得性都很有限,而且在整个研究过程中,服务都被视为缺乏支持性的互动。这不仅仅是资源短缺的表现。尽管资金有所增加,但在服务提供层面满足用户需求时,支持性态度和灵活性仍然至关重要;因此凸显出该系统往往是为系统本身服务,而非为用户服务。