Spangenberg Karlien, Corten Lieselotte, van Rensburg Winnie, Kilian Elizma, McKenzie Judith, Vorster Hein, Jelsma Jennifer
Children with Severe and Profound Intellectual Disabilities Inclusive Education Outreach Team, Western Cape Department of Education, South Africa.
Department of Health and Rehabilitation Sciences, University of Cape Town, South Africa.
Afr J Disabil. 2016 Sep 23;5(1):237. doi: 10.4102/ajod.v5i1.237. eCollection 2016.
The Western Cape Forum for Intellectual Disability took the South African Government to court in 2010 on its failure to implement the right to education for Children with Severe and Profound Intellectual Disability. Subsequently, multidisciplinary teams were appointed by the Western Cape Education Department to deliver services to the Special Care Centres (SCCs). Initially, minimal information was available on this population.
The purpose is to document the process of developing and validating a database for the collection of routine data.
A descriptive analytical study design was used. A sample of convenience was drawn from individuals under the age of 18 years, enrolled in SCCs in the Western Cape. The team who entered and analysed the data reached consensus regarding the utility and feasibility of each item.
Data were collected on 134 children. The omission of certain items from the database was identified. Some information was not reliable or readily available. Of the instruments identified to assess function, the classification systems were found to be reliable and useful, as were the performance scales. The WeeFIM, on the other hand, was lengthy and expensive, and was therefore discarded.
A list of items to be included was identified. Apart from an individual profile, it can be useful for service planning and monitoring, if incorporated into the central information system used to monitor the performance of all children. Without such inclusion, this most vulnerable population, despite court ruling, will not have their right to education adequately addressed.
2010年，西开普智力残疾问题论坛就南非政府未能落实重度和极重度智力残疾儿童的受教育权一事将其告上法庭。随后，西开普教育部门任命了多学科团队，为特殊护理中心（SCCs）提供服务。最初，关于这一群体的信息极少。
旨在记录开发和验证用于收集常规数据的数据库的过程。
采用描述性分析研究设计。从西开普特殊护理中心登记的18岁以下个体中抽取便利样本。录入和分析数据的团队就每个项目的实用性和可行性达成了共识。
收集了134名儿童的数据。确定了数据库中某些项目的遗漏情况。一些信息不可靠或难以获取。在确定的评估功能的工具中，分类系统和表现量表被认为是可靠且有用的。另一方面，儿童功能独立性测量量表（WeeFIM）冗长且昂贵，因此被舍弃。
确定了要纳入的项目清单。除了个人资料外，如果将其纳入用于监测所有儿童表现的中央信息系统，对服务规划和监测可能会有用。若不纳入，这一最弱势群体，尽管有法庭裁决，其受教育权仍无法得到充分保障。
