Abstract

Introduction: Access in France to early diagnosis and care for the most severe, but infrequent, Neurodevelopmental Disorders (NDD), autism spectrum disorder and global developmental delay, in children aged 0–7 was improved through measures implemented in 2019. However, there are no such measures for specific learning disorders (SLD), attention, motricity and language disorders (SLDD), despite their annual incidence of between 5 and 8%.Method: We describe the design of a new type of organization and financing of care for SLDD including evaluation procedure, as well as other factors, mainly at the prevention level that will contribute to local and national policy for this frequent health problem. This in response to a national call for projects, commonly called Article 51, targeted innovation in healthcare delivery and funding in the context of medium-term national reform. This provides project stakeholders with the opportunity to set up and implement “bottom-up” projects, mainly using local professionals. A joint initiative by the regional Health Authorities of the Occitanie region, the French Social Security system and a non-profit Association (Occitadys) proposed an experimental new structure of NDD care and funding.Discussion: We here discuss the design of this experiment that aims, over two to three years, to alleviate families' financial burden of care and establish a regional three-tier care system with respect to evaluation, re-education and rehabilitation care. Our approach may benefit SLDD health-care planning, and addresses the questions of prevention, early detection and care-design for families, taking local and socioeconomic disparities into account.

Highlights

  • Access in France to early diagnosis and care for the most severe, but infrequent, Neurodevelopmental Disorders (NDD), autism spectrum disorder and global developmental delay, in children aged 0–7 was improved through measures implemented in 2019

  • Evaluation will be mainly external, and designed in collaboration with the different partners, according to a reference guide linked to Art 51 [49]

  • The organization of TSLA care in France relies mainly on two different providers: private practice for the first care level, with the role of general practitioners (GPs) and pediatricians, together with reeducation that is massively based on private practice, with SocialSecurity coverage only for speech therapists and orthoptists: all other re-education/rehabilitation is mostly paid directly by the families

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Summary

Introduction

Access in France to early diagnosis and care for the most severe, but infrequent, Neurodevelopmental Disorders (NDD), autism spectrum disorder and global developmental delay, in children aged 0–7 was improved through measures implemented in 2019. The second kind of organization covers specific developmental and learning disorders, including speech (SLI), motricity (DCD), attention (ADHD) and specific-learning disorders (SLD), which we here group together using the French acronym TSLA (Troubles Spécifiques du Langage et des Apprentissages: SLDD), as in a recent French national policy document [7]. A number of coordinated care networks have been developed in various French regions, mainly based on local initiatives and often supported by Regional Health Agencies (Agence Régionale de Santé: ARS). These networks are covered by a National Federation: the Fédération Nationale des Réseaux de Santé Troubles du Neurodéveloppement et des Apprentissages de l’Enfant/Adolescent (https://www.federeseauxdys.org/). Two national expert reports subsequently appeared, covering intellectual developmental disorders [11], and developmental coordination disorders [12]

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