Suivi de la prise en charge scolaire et médicosociale des enfants inclus dans le registre des handicaps de l’enfant de Guyane : entre théorie et réalité

Introduction

In France, to benefit from appropriate medical, social and educational care, children with autism spectrum disorders must obtain a referral from the Maison Départementale des Personnes Handicapées (MDPH), and these notifications must then be implemented. In French Guiana, social and territorial inequalities in health are omnipresent. However, there are no data on the care of adolescents with Autism Spectrum Disorder in French Guiana.

Aim and methodology

The aim of the project was to explore the educational and medico-social pathways of children included in Guiana's autism spectrum disorder register since 2016 (who were living in Guiana in 2016 and whose ASD had been diagnosed before their 8th birthday) by means of a telephone interview and data collection at the MDPH. We included 52 young people aged 11 to 18, including 40 families contacted by telephone. The results obtained through the variables collected show that, despite a diagnosis made before the age of 8, only 29 young people (out of 47 completed) benefit from medical, social and educational care that coincides with the recommendations of the current Commission des droits et de l’autonomie des personnes handicapées (CDAPH).

Results

Of the 52 young people monitored, at least nine – or 17.3% – were not receiving any form of education. Thirty one young people were receiving medical, social, health and/or educational care at the time of the survey, compared with 16 who were not receiving any, mainly because they had been on a waiting list for an average of five years. In addition, 34% said they were not satisfied with the overall care their child received, mainly because of staff shortages.

Conclusion

In conclusion, in French Guiana, there is a significant gap between what is recommended to parents for their teenage child's care and what is actually possible.