How can we better provide medical care for children and adults with multiple disabilities? What support should be put in place to promote their learning and social life? But also how can we prevent institutional or family mistreatment of these very vulnerable people, think about their end of life, etc.? These are some of the subjects explored in a collective Inserm expertise on multiple disabilities, commissioned by the National Solidarity Fund for Autonomy, published on June 11. Twelve experts from different backgrounds collaborated for three years, consulting 3,400 scientific sources, to produce a report of more than nine hundred pages, accompanied by numerous recommendations. Interview with doctor and researcher Mickaël Dinomais, head of the physical medicine and functional rehabilitation department at Angers-Capucins University Hospital, one of the twelve experts.
What is a multiple disability?
It is a clinical picture, a syndromic entity and not a disease, which combines very severe intellectual and motor deficiencies, linked to damage to the brain during its development. This results in restrictions, also very severe, on communication, mobility and autonomy. Other impairments may be present: sensory deficits, epilepsy, behavioral disorders, etc. It should be noted that this term “multiple handicap” is French-speaking and does not really have an equivalent in Anglo-Saxon literature. In France, there was a desire to specify in the definition that the brain lesion occurs during its development, which explains the specificity and complexity of the clinical pictures.
The causes are numerous: genetic anomaly, event occurring during intrauterine life (toxic, infectious, vascular, etc.), at the time of birth (mainly asphyxia), or in the first years of life. The causal etiology is only found in 40% to 50% of cases. The situations vary greatly from one person to another, but there is a commonality of needs. Another French particularity, the term “polyhandicap” has been included for a long time, initially in a circular and a decree in the 1980s then in a legislative decree of 2017, probably for reasons of administrative categorization, but also so that these particularly vulnerable people are not forgotten in medico-social support and care.
How many people are affected in France?
You have 74.83% of this article left to read. The rest is reserved for subscribers.
