Choose where you want to live
In 1997, AFM-Téléthon launched an experimental home-service programme in a subsidized housing unit in Angers (France), Gâte-Argent, with various partners including the town's subsidized housing office. At stake: to demonstrate that people suffering from neuromuscular disease, deprived of movement and with respiratory assistance could live at home in complete safety. Until now, these people, who need help with every aspect of daily life, and rapid treatment in the event of problems (particularly respiratory), had no other choice than to live with their family or in hospital, or at one of the rare reception centres which accepts patients with tracheotomies.
A system combining independence and safety
At Gâte-Argent ten apartments are reserved for these individuals. They are fitted out for people in electric wheelchairs (maximum accessibility, space, safety, remote control for lights, doors, windows, etc.). For routine care and daily activities, patients call on district nurses and home-help services. But in an emergency and in the absence of these helpers, there is a permanent safety office in the building, where nurses are on duty day and night.
"A member of society in the full sense of the term!"
Thirteen years later, the experiment has largely proved its worth. Suffering from spinal muscular atrophy, Christine has lived at Gâte-Argent since 1999, with her husband who suffers from Duchenne muscular dystrophy. Like the other tenants, she praises the solution: "Without this structure we couldn't have been independent. Here we live like everyone else - in total safety, because at the slightest problem the nurse is immediately there, but without the complexity of hospital or the constraint of having a third person constantly with us. We are members of society in the full sense of the term!"
A concept which could be emulated
"Gâte-Argent was designed for people suffering from a neuromuscular disease, but the concept is generating interest for other diseases involving severe disabilities or highly-dependent elderly people," said Jacques Martin, manager of the residence safety office. "We recently met with others designing this type of project to explain to them how it works here."