A survey on feasibility of ICF-CY use to describe persisting difficulties in executing tasks and activities of children and adolescent with disability in Italy

Background: The criterion for the provision of disability benefits to people under 18 in Italy is the presence of persistent difficulties in carrying out the duties and functions of their own age; however, no national guidelines are available to support the Disability Commissions in assessing such difficulties. Objective: This study identified the different kinds of persisting difficulties in performing tasks and activities of children and adolescents with disability in Italy. Methods: We used a protocol based on a selection of 55 categories taken from the Activity and Participation components of the International Classification of Functioning, Disability and Health - Children and Youth version. Problems were represented dividing children by age groups, and categories were selected as relevant if reported by 20% of the cases as very severe/complete problems. A count-based methodology was chosen and categories were counted at the level of domain, showing differences related to age groups. Count-based complexity and severity indexes were calculated, reflecting the global amount of problems and the portion of very severe/complete ones. Results: Out of 415 children with disability enrolled in the study, 290 had persisting difficulties, with those referring to domestic life, major life areas and learning being the most common, and with specific age-related trends. The highest number of problems was reported for children in the 4- 6 year age group. Conclusions: Our approach is meant to foster a way toward understanding disability and functioning as a continuum, based on the amount and severity of difficulties that children may have, as opposed to a categorical, diagnosis-based approach.