In: Philippe Camberlein ed, La personne polyhandicapée. La connaître, l’accompagner, la soigner.
Paris, Dunod, “Guides Santé Social”, 2021, p. 1273-1297. DOI : 10.3917/dunod.colle.2021.01.1273.
Chapter 71 – Research and multiple disabilities
Boutin, A., Billette de Villemeur, T., Hully, M., Plivard, C. & Rousseau, M.
Knowing people with multiple disabilities and their environment, and developing research on multiple disabilities, are essential to adapting their support and promoting their access to a satisfactory quality of life.
Research into multiple disabilities is needed to gain a better understanding of this particular and serious disability, which is still under-studied. Multiple disabilities raise a host of medical questions – how can we improve the state of health of these people? How to combat medical complications? – but also: how can we stimulate their awareness and their ability to acquire skills and communicate? How can we improve their quality of life and support them? What kind of reception and care facilities are available?
Other questions arise, the answers to which influence the way in which people with multiple disabilities are accepted, respected and accepted as stakeholders in community life. What role do they play in family life, schooling, access to culture and citizenship?
These questions lead to other essential, more philosophical and ethical ones, such as their participation in our common humanity, with the ensuing consequences for the nature and scope of their rights, and the way in which these rights are implemented and respected.
Knowledge of multiple disabilities, people with multiple disabilities and their family, professional and social environments is essential to adjust the support offered to them, to best meet their needs and expectations, and those of their family and professionals, and thus facilitate their participation and harmonious inclusion in their environment…