Abstract
BackgroundThe 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.ObjectivesThe purpose is to document the process of developing and validating a database for the collection of routine data.MethodA 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.ResultsData 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.Discussion and conclusionsA 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.
Highlights
The second United Nations (UN) Millennium Development Goals included the achievement of universal primary education (UN) by 2015, which encompasses children with disabilities
For millions of children with physical and intellectual disability this goal may not be close to realisation, despite various UN Declarations affirming their rights to education
The DSM-5 (American Psychiatric Association 2013) stipulates the following specifiers in terms of the severity of intellectual disability: The various levels of severity are defined on the basis of adaptive functioning, and not IQ scores, because it is adaptive functioning that determines the level of supports required
Summary
The second United Nations (UN) Millennium Development Goals included the achievement of universal primary education (UN) by 2015, which encompasses children with disabilities. For millions of children with physical and intellectual disability this goal may not be close to realisation, despite various UN Declarations affirming their rights to education. Children with more severe and profound disabilities have been especially disadvantaged. Within the Western Cape (WC), there are estimated to be approximately 3000 children with severe or profound intellectual disability (CSPID) (Kleintjies et al 2006; McKenzie, McConkey & Adnams 2013a). Kleintjies et al defines profound intellectual disability as having IQ levels below 30. 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.
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