Rousseau MC., Dagois JF., Lausecker C., Humbertclaude E., Dominique A., Hamouda I., Auquier P., Billette de Villemeur Th., Baumstarck K.
Journal of Policy and Practice in Intellectual Disabilities. 2021; doi.org/10.1111/jppi.12384.
The healthcare pathway of persons with complex developmental disabilities differs by country, depending both on the specificities of the associated healthcare system and the related societal views. In 2017, the French National Organization of Solidarity for Autonomy entrusted to a group of French experts with a specific mission to analyze three European experiences.
The aim of this article is to report the similarities and differences in the healthcare pathways of persons with complex developmental disabilities between France and two other European countries, Italy and Norway. The three countries present different health policies and different ideologies for the care management of persons with complex developmental disabilities.
A group of six French experts (including a neuro-pediatrician, an occupational therapist, a specialist of physical medicine and rehabilitation, a responsible member of a residential facility, a family caregiver representative, and the administrative coordinator of the French Polyhandicap Federation) traveled throughout Italy and Norway (3 and 4 days, respectively). Standardized forms were used to collect information, including dedicated structures, care delivery, dedicated physicians and other healthcareworkers, human and financial aid, place of the caregivers, and preventive and therapeutic actions.
Law and health policies, funding, care coordination, and education differ between the three countries (France, Italy, and Norway) and in their effect on the lives of patients and their families.
The three different society models for modalities of care for persons with complex developmental disabilities may have consequences on the lives of patients and their families. This work may help to optimize the level of care according to both patient and family characteristics.
© 2021 International Association for the Scientific Study of Intellectual and Developmental Disabilities and Wiley Periodicals LLC.