Communication and Intellectual Disability

Introduction

"To effectively communicate, we must realise that we are all different in the way we perceive the world, and use this understanding as a guide to our communication with others."
— Anthony Robbins

Communication is important in every aspect of life. In medicine, it is fundamental — without it, diagnosis and treatment become impossible. Good communication skills enable clinicians to identify problems more accurately, achieve greater patient satisfaction, and reduce their own work-related stress.

Methods of Communication

• Verbal communication — spoken language
• Non-verbal communication:
  • Written communication
  • Visual communication
  • Body language, facial expressions, gesture
• Augmentative and Alternative Communication (AAC) systems:
  • The Picture Exchange Communication System (PECS)
  • Makaton (simplified sign language and symbol system)
  • British Sign Language (BSL)
  • Communication passports and hospital passports

Research by Mehrabian and Ferris found that in face-to-face communication, words (verbal content) account for only 7% of communication, the voice tone (vocal quality) accounts for 38%, and body language (visual/non-verbal) accounts for 55%. This is a particularly important finding when communicating with people with intellectual disability (ID), as non-verbal channels of communication often carry far more meaning than spoken words.

Why Is Communication with People with Intellectual Disability Important?

Some clinicians may feel that communicating with a person with ID is time-consuming and inefficient. However, thoughtful communication with the individual themselves — alongside listening carefully to their families and carers — is essential to good clinical care. The principle is simple: "It is better to get it right rather than to get it fast."

People with intellectual disability have a higher prevalence of many medical conditions compared to the general population, including epilepsy, hypothyroidism, dementia (particularly in people with Down's syndrome), poor dental hygiene, and sensory impairments. Communicating effectively with people with ID is therefore essential to accurately diagnosing and treating these conditions.

The General Medical Council (GMC), in its guidance Good Medical Practice, states that clinicians must share information in a way that patients can understand, and must "make sure, wherever practical, that arrangements are made to meet patients' language and communication needs."

Benefits of Effective Communication

• Improved understanding and management of physical and mental health conditions, as clinicians can build better rapport by recognising the person's developmental age and conducting the assessment at an appropriate level
• Holistic package of care — addressing the social, educational, and financial needs of the patient
• Prevention of harm — there is a history of avoidable deaths in people with intellectual disability arising from failures of communication and clinical indifference. The Mencap report Death by Indifference (2007) highlighted six cases of people with ID who died unnecessarily while in NHS care due to institutional discrimination and poor communication

How to Communicate with People with Intellectual Disability

"The true sign of intelligence is not knowledge but imagination."
— Albert Einstein

It is essential to involve the person with intellectual disability at every stage of the consultation as fully as possible. This can be challenging due to unfamiliarity, anxiety, stigma, or the severity of the person's disability. Creativity and flexibility are key. The following tips are guidelines rather than strict rules — what works for one person may not work for another.

Practical Tips for Communicating with People with ID

• Speak to carers first to gather background information. Find out about the person's likes and dislikes, their preferred methods of communication, known triggers for distress, and the terminology they use to describe pain or discomfort. In emergency settings such as A&E, this conversation may be brief but is still valuable — a patient with moderate or severe ID is likely to have arrived with a carer who can provide essential context.
• Introduce yourself clearly and explain simply why you are speaking to them.
• Choose the right setting. Communicate in a place where the person is most comfortable — their day centre, residential home, or familiar clinical area. Avoid busy, noisy, or overwhelming environments where possible.
• Pay attention to what you wear and how you present yourself. Colours, uniforms, or accessories can unexpectedly cause distress. One of the authors recalls a patient who became very upset on seeing a blue jumper — removing the jumper immediately resolved the situation. Be attentive and flexible.
• Allow more time. The Mencap report Treat Me Right! noted that many people with ID and their carers felt that longer, more accessible appointments would significantly help them feel less rushed and more able to express themselves.
• Use simple language. Start the conversation with something the person likes to talk about to establish rapport. Ask short, simple, jargon-free questions. Use familiar, everyday words.
• Use appropriate facial expressions and body language. These carry most of the communicative load. Be warm, open, and non-threatening in your posture.
• Set a comfortable pace. Give the person ample time to answer and express themselves. Do not rush, interrupt, or finish their sentences.
• Offer alternative communication methods. Some people have better written skills than verbal skills — offer pen and paper. Use drawing, pictures, or symbols if verbal communication is difficult.
• Use PECS (Picture Exchange Communication System) or Makaton symbols to facilitate communication if appropriate.
• Use communication passports and hospital passports. These documents contain information about the person's communication style, preferences, health history, and care needs, and can be invaluable in both planned and emergency care settings.

Communication Aids and Systems

PECS — Picture Exchange Communication System

Developed by Bondy and Frost (1994), PECS is a form of augmentative and alternative communication (AAC) that uses pictures to facilitate communication. The person selects a picture representing what they want to communicate and exchanges it with another person. It was originally developed for children with autism spectrum disorder and has been adapted for use with adults with ID. PECS helps individuals who have limited or absent verbal communication to express wants, needs, feelings, and information.

Makaton

Makaton, developed by Margaret Walker (1972), is a language programme that uses symbols, signs, and speech to enable people with communication difficulties to communicate. Unlike British Sign Language, Makaton is used alongside spoken English rather than as a replacement for it. It uses a carefully selected, structured vocabulary and is widely used in schools, care settings, and increasingly in healthcare. Basic Makaton training can be obtained by any healthcare professional and significantly improves communication with people who use the system.

Books Beyond Words

The Books Beyond Words series, edited by Professor Sheila Hollins (Royal College of Psychiatrists), is an invaluable resource for people with learning and communication difficulties. These books use pictures rather than words to address difficult subjects in an accessible and sensitive way. Titles include Going to the Doctor, Getting on with Epilepsy, When Mum Died, and many others. They can be used by clinicians to facilitate discussions about medical topics and procedures, and are available through the Royal College of Psychiatrists publications.

Speech and Language Therapists

Speech and Language Therapists (SLTs) play a crucial role in assessing and treating speech, language, and communication problems in people with intellectual disability. They also work with people who have eating and swallowing difficulties (dysphagia). SLT assessment can help identify the most effective communication methods for an individual and inform reasonable adjustments to clinical care. Whenever communication is significantly impaired and time allows, a referral to or consultation with an SLT is strongly recommended.

Mental Capacity and Supported Decision-Making

The Mental Capacity Act 2005 (England and Wales) provides the legal framework for supporting and making decisions for people who may lack capacity. Key principles include:

1. Presumption of capacity: Every adult must be assumed to have capacity unless it is established otherwise. This is particularly important for people with ID — having an intellectual disability does not automatically mean a person lacks capacity to make decisions.
2. Supported decision-making: Every practicable step must be taken to support the person to make their own decision before a finding of incapacity is made. This includes providing information in accessible formats (Easy Read, pictures, symbols), involving advocates, and consulting familiar carers.
3. Right to make unwise decisions: A person with capacity has the right to make decisions that others consider unwise. Capacity is not about making "good" decisions.
4. Best interests: Any act or decision made on behalf of a person lacking capacity must be in their best interests and must be the least restrictive option available.
5. Least restrictive option: The option that least restricts the person's rights and freedom of action should always be preferred.

Capacity Assessment — Functional Test

A person lacks capacity to make a specific decision if they are unable to:

• Understand information relevant to the decision (in plain, simple language)
• Retain the information for long enough to make a decision
• Use or weigh up the information as part of the decision-making process
• Communicate their decision by any means available

Capacity is decision-specific (a person may have capacity for some decisions but not others) and time-specific (capacity can fluctuate). Impaired capacity must be established both as a diagnostic threshold (does the person have an impairment of mind or brain?) and as a functional test (do they fail one or more of the four functional components above?).

Advocacy

An Independent Mental Capacity Advocate (IMCA) must be appointed for people lacking capacity who have no family or friends to support them when important decisions are being made about serious medical treatment or changes in residence. For people with intellectual disability facing complex health decisions, an advocate plays a vital role in ensuring the person's wishes and values are heard and represented, even when they cannot fully articulate them.

Reasonable Adjustments

The Equality Act 2010 places a legal duty on NHS organisations to make reasonable adjustments for people with disabilities, including intellectual disabilities. Reasonable adjustments in healthcare may include:

• Longer appointment times (flagged on records using a Learning Disability flag)
• Appointment letters in Easy Read format
• Accessible information about procedures and treatment options
• Annual Health Checks (offered to all adults with a learning disability on GP registers)
• Hospital passports shared with all clinical staff
• Liaison learning disability nurses available in acute hospital settings
• Environment modifications (quiet waiting areas, reduced waiting time)

The STOMP Programme

STOMP stands for Stopping the Over-Medication of People with a learning disability, autism, or both. It is an NHS England programme that highlights and aims to address the inappropriate prescribing of psychotropic medications — particularly antipsychotics, benzodiazepines, and antidepressants — to people with intellectual disabilities and/or autism, often for behavioural reasons rather than a diagnosed mental health condition.

Key messages of STOMP:

• Psychotropic medication should never be used as a first-line treatment for behaviour that challenges
• Behaviour that challenges is a communication — it almost always has a function and an underlying cause that should be explored and addressed
• All clinicians prescribing psychotropic medication to people with ID or autism should regularly review whether the medication is still necessary and appropriate
• Non-pharmacological approaches (positive behaviour support, environmental modification, communication strategies) should be tried first
• Patients, families, and carers should be actively involved in decisions about medication

STOMP is complemented by STAMP (Supporting Treatment and Appropriate Medication in Paediatrics), which applies the same principles to children and young people.