15 Better care for children with developmental disorders

The study focused on an analysis of data about children with developmental delay up to the age at which they start kindergarten (2,200 new cases annually) in the Canton of Zurich. The children concerned were characterised in terms of clinical, demographic, and environmental factors. The children’s activities, their participation, and the way they access the early intervention system was also studied. It subsequently was established which children received which treatment and how the children’s condition changed over time. Finally, the needs of affected families and their satisfaction and experience with the healthcare system was studied.

Developmental disorders such as specific language impairment, mental retardation, social delay, motor disabilities or behavioural disorders are among the most common disorders encountered in early childhood. It is vital to identify and treat these disorders at an early stage to avoid late complications and improve the children’s participation. The University Children’s Hospital in Zurich and the cantonal hospital in Winterthur each have a specialised centre where affected children are documented, and the necessary measures coordinated.

The aim of the study was to characterise in more detail the children with developmental disorders in early childhood who are recorded in the central register, to analyse the processes in which they are documented and treated and to understand the needs of the affected families. This data register is the only source of its kind in Switzerland that can generate more knowledge about the system and the way early intervention services for children with disordered development are used.

The study showed that the Zurich system for assessing special educational needs for preschool children with developmental disorders was rated very highly by professionals and families with affected children. Children with developmental disorders and language development problems are identified and referred to therapy centers early in the Canton of Zurich. However, there is a need for optimization in the number of available therapy places as well as in the geographical accessibility of pediatric practices and therapy centers.

Significance of the results for research and practice

The Zurich register established within the framework of the study and the resulting findings can be used to shape the political decision-making of the support system for children with developmental disorders in the first few years of life. In addition, the results can be used to develop decision-making aids for experts regarding needs-appropriate, effective, and cost-effective treatment and care for the children concerned. Last, the results can also provide other cantons with information on how to better support affected children.

Preschool Children with Developmental Delay: The Standard of Care Evaluated