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Profound multiple disability

Profound multiple disability combines significant physical dependence and significant intellectual disability, most often present since early childhood. The person needs help with almost every everyday action, and rarely communicates through speech.

Even so, they perceive, feel and react. A look, a change in breathing, a tensing up or a smile carry messages that the close circle learns to read over time.

Each person with a profound multiple disability has their own language: a certain sound means "I am in pain", a certain way of turning the head means "more", a tension in the arms signals that the environment is becoming too strong. This vocabulary is written down nowhere, it is passed on from one close person to the next.

Hence a very concrete difficulty: with each new person who steps in, a change of carer, a stay in a care facility, a hospital admission, this whole code has to be explained again from the beginning. Without it, a signal of pain risks being mistaken for mere agitation.

A varied reality, never fixed

Profound multiple disability covers very different situations depending on each person's motor, sensory and communication abilities. Some people move around in an adapted wheelchair, others not at all; some see and hear well, others also have sensory particularities. What these situations share is the need for attentive and continuous support, and the importance of knowing the person well in order to help them well.

What really helps

  • knowing in advance the signals specific to the person (pain, pleasure, tiredness, refusal),
  • respecting their pace, without rushing care or mealtimes,
  • setting up a stable, calm and predictable environment,
  • relying on suitable communication tools (pictograms, eye gaze, switches) when they exist.

Possible accommodations

Depending on age and level of autonomy, support is organised around dedicated structures and arrangements:

  • At school: an individualised schooling plan (PPS, in France), human support (AESH, a teaching assistant for students with disabilities, in France), shared schooling with a medical and social facility, adapted equipment.
  • At work: for adults, a day care centre or a specialised facility rather than ordinary employment, with follow-up organised via the MDPH (the local disability office, in France).
  • In daily life: human assistance, positioning and mobility equipment, stable reference points and clear handover of habits to each person involved.

Explanations based on your profile

Choose a profile to read the matching explanation.

Profound multiple disability explained to a Child

0–12 years old

Multiple disabilities is when several things make life harder all at the same time.

The person finds it hard to move their body, as if their legs and arms don't respond well. They may also find it hard to speak or to understand words.

But they feel things very clearly: they see your smile, they feel it when you touch them gently, they understand your love. It's as if their heart speaks louder than words.

These people need help with everything: eating, getting dressed, moving around. And above all, they need your presence, your gentle voice and your smiles to feel good.

Help others understand

Living with the Profound multiple disability: the context set, the conversation freed.

You write your profile just once. At every new school year, every new team, every new caregiver, you share the QR code, no need to start over from scratch. The conversation continues, it just begins from a different point.

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