Down syndrome – a challenge for Latvian health care and education system

¹ Liepaja Regional Hospital, Latvia
² Liepaja Children Palliative Care Team, Latvia
³ NGO Dizhvanagi, Latvia
⁴ Rıga Stradiņš University, Latvia
⁵ CSCC “Kurzeme” branch “Liepaja”, Latvia
⁶ Liepaja University, Latvia

^* Corresponding author: julijacirule@yahoo.com

Abstract

Down syndrome (DS) is a genetic disorder. From 1997 to 2015, 473 DS patients were born in Latvia. Prenatal diagnosis allows terminating pregnancies with high risk of DS. The aim of our research was to assess the impact of environmental quality (family and extra-familial care) on the child's development, range of services for DS patients, and to identify the optimal early support system. Families and specialists were interviewed to analyze differences between children in families and institutional care clients. State financial support for a DS child in the family is less than to a child in institutional care, and does not provide adequate rehabilitation services. Conclusion: the environment (family/institution, available resources, and rehabilitation services) where the child grows up after the birth, determines both their quality of life and level of independence development. If the somatic problem-solving path is clear, then social integration needs to be improved. Support of inter-professional teams for the families is necessary immediately after the diagnostic statement in order to ensure a more favourable family environment and to reduce the risk of institutionalization. Despite the potentially higher early intensive rehabilitation costs, in the course of time we can predict that it will provide an economic effect on the state and improve the patient and their family's quality of life.