Choosing How We Describe the Development of Children with Severe Disability

The aim of this chapter was to make recommendations to the Griffiths III community of practice, who requested advice on the reporting of children’s development below the floor of the test so that individual strengths and needs can be described. In children with severe disability, the test floor effects seen in standardised tests lead to a standardised score of 1 or less thus displaying a flat profile that obscures a child’s individual strengths and needs. Grouping of these children together in an amorphous group leads to the use of a pseudo-diagnostic term, for example PMLD (Profound Multiple Learning Difficulties) which offers few clues to the child’s real strengths and needs. A child’s strengths can be used as building blocks to structure communication and learning programmes to meet the child’s needs.

Following an earlier Scoping study and a larger literature study, this chapter presents the third stage of the investigation.

Phase 3 was carried out retrospectively, using the same methods as the preceding phases, but in the opposite direction, to confirm quality control. Peer reviewer comments and key elements from the Scoping Review and key words from the publications were tabulated. Data analysis included a change of perspective to that of the child and their individual rights with respect to the literature themes already described in Phase 2.

The scoping review produced no replicable evidence to answer the practitioners’ questions using the scoping review methodology of pre-determined research questions.

This study has confirmed that there is little specific guidance in the literature but that advances in computational advances for homogeneous populations and especially disaggregated data offer some solutions. For our research and clinical practitioner community using Griffiths III, a qualitative assessment of skills and needs is recommended for children who display a flat developmental profile because the parametric test is not appropriate for them. The analysis is possible at the individual item level enabling assessment of the child’s ability at items of differing constructs.

The use of disaggregated data to draw attention to problems specific to certain subsets of results is advised, as is a greater balance between broad biopsychosocial models and standardised modes of assessment. This knowledge is vital to support the child in communication, socialisation and education. This will ensure that the child’s right for their individual strengths and needs to be described together with a plan for management may be met within both educational and health settings.