Monitoring educational participation in children with severe to profound intellectual disability in rural districts of the Western Cape: A descriptive analytical study

Master Thesis

2018

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Subsequent to a High Court ruling, educational support was made available to children with severe to profound intellectual disability in the Western Cape in the form of multi-professional outreach teams. Neither the attainment of learning outcomes nor indicators of educational performance have been reported for those receiving these services. The use of the P scales, which were developed in the United Kingdom to specify educational attainment targets, have been piloted by the outreach teams. However, the reliability and responsiveness to change of these scales needed to be established within the Western Cape context. This research aimed, firstly, to develop a profile of the children in receipt of support from the rural outreach team through the use of a record review, which could inform future service delivery. The second aim was to validate the P scales in the context of rural districts in the Western Cape. The third was to document the nature, content and frequency of intervention by the team. The fourth aim was to identify variables that might be associated with the attainment of learning outcomes. The study population of 498 children had a mean age of 9.9 years and 60% were male. Afrikaans was the home language for most (68%), followed by IsiXhosa (28%). Only 29% lived with both parents, 33% with a single parent, and a high number were in foster care (13%). The most prevalent associated health condition was found to be cerebral palsy (27.9%). Many presented with more than one condition, frequently involving epilepsy. Prominent aetiological factors were classified as maternal and child (25%) or congenital and hereditary (23%) conditions. Chronic medication was used by 37%, but information on other medical procedures was largely unavailable. Children (62%) received additional therapeutic services from the Western Cape Department of Health (62%) and other therapists, including students. The need in terms of wheelchairs and buggies was met, but access to standing frames was limited. Transport was largely available through the special care centres. Where the classification systems were applied, most children were found to be mobile, with good hand function. However, most children were “seldom effective” in communicating their needs. For all subject areas measured by the P scales, peaks were observed at P1(ii) and between P4, P5. Reliability, internal consistency and responsiveness of the P scales were established through a longitudinal study design, using two routinely assessed scores of 83 participants - done at least one year apart. The internal consistency (reliability) (Cronbach’s alpha) was very high in the whole sample (.99) but somewhat lower in the children with a higher performance level (.71). The scale was responsive and the Sign test indicated improvement in every item across time, with at least 39 of the 83 children improving from the first to the second assessment. Known group validity was determined by comparing P scale scores to scores across the different levels of the three routinely applied classification scales [gross motor (n=181), manual ability (n=181) and communication (n=177)]. In every case, the scale item score was significantly associated with the level of the corresponding classification system. Concurrent validity, using the Vineland Adaptive Behaviour Scales II as the gold standard with 41 participants, was demonstrated. Each item was significantly correlated with the relevant specifying performance attainment targets of the Vineland Adaptive Behaviour Scale item (range rho=.61-.84). Feasibility and acceptability of the P scales were determined by twelve professionals in the field. Eight reported them to be useful. It was concluded that selective, routine use can be valuable in tracking learners’ performance. A descriptive analytical longitudinal record review of 83 participants was used to establish which factors were related to educational performance over a period of at least one year. Age, language concordance, medical conditions, independent mobility, effective communication, comprehensive support and individual intervention from Western Cape Education Department team members did not emerge as significant indicators of change in participation ability of this study population. Recommendations include the following. The high number of children in need of medical support implies that there should be good working relationships between teams, centres and communitybased services from Department of Health. It is imperative that rehabilitation services remain in place, with optimal use of additional services and interdepartmental communication on the operational level to ensure that every child receives the necessary therapeutic support. The P scale scores indicated that there were two groups of children, those with very limited performance (P1) and those with improved ability to participate (P4, P5). As their support needs are likely to be different, this should be factored into the programmes and training of support staff. It is strongly recommended that all children receiving support from WCED should have their information entered using the same data base and this information should be amalgamated centrally to inform future planning of services and training within the region. The P scales indicated that, when used within the context of the rural team, these scales were both valid and reliable. It is therefore recommended that a similar approach to administration, namely collaborative scoring after training on assessment procedure, be adopted throughout the province. It was also encouraging that the P scales were responsive to change and approximately half of the children showed improvement over a period of six months or more. The high correlation between the scales in children with the most profound impairments implies that it might be sufficient to administer only one or two of the four scales in this group. The P scales have the potential to be rolled out alongside the newly developed Learning Programme for Learners with Severe to Profound Intellectual Disability. With the emphasis on educational performance, it could become the standard assessment tool. The instrument would then need to be validated within a larger context, with training of administrators and standardisation of the assessment process a prerequisite.
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