Chapter 1 of the book “La personne polyhandicapée – 2e édition : La connaître, l’accompagner, la soigner”. P. Camberlin and G. Ponsot. Coll. Guide Santé Sociale. January 2021. Dunond: Malakoff
Chapter written by Gérard Ponsot and Anne-Marie Boutin
Mediation/Education :
A person with multiple disabilities is first and foremost “a person”. It is vital to recognize it as a full-fledged member of society. This means moving away from exclusive approaches and valuing our contribution.
Multiple disabilities are characterized in particular by extreme restrictions in autonomy, severe motor impairment and severe or profound mental deficiency which, because of their interaction, limit the social participation of people with multiple disabilities.
Depending on the etiology, there are three types of polyhandicap: fixed congenital polyhandicap, or progressive congenital polyhandicap, and acquired polyhandicap, with different consequences in terms of severity, the person’s incapacities, the feelings of those around him or her, and the support provided. What’s more, there is a close link between multiple disabilities and rare handicaps: recognizing this relationship is essential to understanding the unique challenges involved in managing them.
Multiple disabilities are the result of a combination of three factors:
- organic: brain damage
- subjective: how the person feels about their disability
- environmental: aggravating or limiting
These three factors need to be taken into account on a regular basis in order to create a global, individualized project that meets the needs of the individual (personal fulfillment, quality of life, etc.). Individualized care must integrate aspects such as care, education and access to social life, adapted to the specific needs of each individual.
The social inclusion of people with multiple disabilities presents both challenges and opportunities for society: promoting their active participation is a major challenge.
Multiple disabilities require adapted measures in a number of areas:
- Heavy physical and intellectual dependence
- Severe to profound intellectual disability
- Communication
- Behavioral and psychopathological disorders
- Motor difficulties and orthopedic consequences
- Medical fragility
- Epilepsy
- High vulnerability to routine and specialized medical care
- Listening to and exchanging ideas with family and friends
- Auditory and visual sensory deficits
- Psycho-developmental aspects
Scientific work is attempting to establish communication with people with multiple disabilities and provide reliable information to those around them about their medical situation.
Highlighting the realities of multiple disabilities, the issues involved in caring for them and the importance of an inclusive society raises strong ethical issues concerning end-of-life decisions for these people.
Today, people with multiple disabilities are living longer thanks to advances in medical care, even if their life expectancy remains influenced by the complexity of their impairments, often associated with motor and cognitive problems. Significant advances in healthcare and prevention (better therapeutic approaches and increased support) have improved their quality of life and longevity. As a result, support needs are evolving, and it’s becoming crucial to offer appropriate support to people with multiple disabilities, particularly those who are advancing in age.
For further details, we invite you to read the chapter written by Gérard Ponsot and Anne-Marie Boutin (2021).
