Original Research

The validation of an educational database for children with profound intellectual disabilities

Karlien Spangenberg, Lieselotte Corten, Winnie van Rensburg, Elizma Kilian, Judith McKenzie, Hein Vorster, Jennifer Jelsma
African Journal of Disability | Vol 5, No 1 | a237 | DOI: https://doi.org/10.4102/ajod.v5i1.237 | © 2016 Karlien Spangenberg, Lieselotte Corten, Winnie van Rensburg, Elizma Kilian, Judith McKenzie, Hein Vorster, Jennifer Jelsma | This work is licensed under CC Attribution 4.0
Submitted: 27 October 2015 | Published: 23 September 2016

About the author(s)

Karlien Spangenberg, Children with Severe and Profound Intellectual Disabilities Inclusive Education Outreach Team, Western Cape Department of Education, South Africa
Lieselotte Corten, Department of Health and Rehabilitation Sciences, University of Cape Town, South Africa
Winnie van Rensburg, Children with Severe and Profound Intellectual Disabilities Inclusive Education Outreach Team, Western Cape Department of Education, South Africa
Elizma Kilian, Children with Severe and Profound Intellectual Disabilities Inclusive Education Outreach Team, Western Cape Department of Education, South Africa
Judith McKenzie, Department of Health and Rehabilitation Sciences, University of Cape Town, South Africa
Hein Vorster, Children with Severe and Profound Intellectual Disabilities Inclusive Education Outreach Team, Western Cape Department of Education, South Africa
Jennifer Jelsma, Department of Health and Rehabilitation Sciences, University of Cape Town, South Africa


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Abstract

Background: 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.
Objectives: The purpose is to document the process of developing and validating a database for the collection of routine data.
Method: 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.
Results: 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.
Discussion and conclusions: 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.

Keywords

database; profound intellectual disability

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Crossref Citations

1. Intellectual disability rights and inclusive citizenship in South Africa: What can a scoping review tell us?
Charlotte Capri, Lameze Abrahams, Judith McKenzie, Ockert Coetzee, Siyabulela Mkabile, Manuel Saptouw, Andrew Hooper, Peter Smith, Colleen Adnams, Leslie Swartz
African Journal of Disability  vol: 7  year: 2018  
doi: 10.4102/ajod.v7i0.396