Communicating with people with learning disabilities

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I have been a learning disability nurse since 1994. Over the years, I have encountered many colleagues who asked me how to communicate with people with learning disabilities who present in their services.  My initial response would be to communicate with the person how they communicate with you, but I recognised that this might not be that straightforward for many.

Pausing for a moment, I feel it is necessary to clarify to whom I refer when I identify people with a learning disability. Society identifies people using a variety of terms. In the U.K., we use the term learning disability. Internationally, people may have an ‘Intellectual Disability’ or an ‘Intellectual and Developmental Disability’; people may also refer to themselves as learning having a ‘learning difficulty. The use of the term ‘learning difficulty’ adds further complexity. In the U.K., this term is generally used in the educational environment when referring to developmental learning disorders such as Dyslexia or ADHD.  

The formal definition in the U.K. – 

Learning disability includes the presence of:

● A significantly reduced ability to understand new or complex information, to learn new skills (impaired intelligence), with;

● A reduced ability to cope independently (impaired social functioning);

● which started before adulthood, with a lasting effect on development. (Department of Health, 2001)

Person-first language

When communicating with a person with a learning disability, it is essential to start the communication using person-first language. The term learning disability is a label. A label only ever describes one aspect of a person, a person with a learning disability is always a person first. 

This video from the Special Olympics explains the term Person first language.

Labels are for jars

The learning disability rights movement has campaigned to recognise that ‘Labels are for Jars’, not people. Some labelling is necessary to ensure people’s health and care needs are correctly identified and provide opportunities to access the necessary support. For more information, please read ‘Changing Labels’

It is essential to recognise that people with learning disabilities are not a homogeneous group. People are unique; people will present with different levels of learning disability mild, moderate, severe, profound or provisional (you can read about these in the ICD11) and will experience a variety of health needs-, short- and long-term conditions and complex health needs. The combination of the level of learning disability and complexity of health and care needs can, unfortunately, lead to diagnostic overshadowing.

Learning disabilities: Diagnostic Overshadowing 

“Diagnostic overshadowing occurs when all the changed or unusual behaviours are attributed to the intellectual disability or, conversely, everything is attributed to a psychiatric disorder without due acknowledgement of the impact of one on the other” (R.C.N., 2018).

When diagnostic overshadowing occurs, the presenting signs and symptoms of the health need may be missed leading to an inaccurate assessment of need and potentially the incorrect intervention or treatment being provided.

I hope that you now have a better understanding of who I am referring to in this blog. 

So, back to communication.

Communicating with people with learning disabilities

Communication is the conduit between the individual and the world. It is the very cornerstone of identity formation, social engagement and human relationships (Bunning, 2009:46).

We communicate with others from the moment we draw breath. Our early, preverbal communication consists of vocalisations and cries as infants communicate with the world around them. We pay attention to these communications and bring our interpretation to them; we try and work out what the infant is saying to us. 

Verbally:

through spoken words, the language, dialect, and vocabulary used, the pace and intonation during delivery, simplicity and complexity, clarity and brevity, congruence, timing and relevance, adaptability, credibility, humour all influence our interpretation of what the person is saying.

Non-verbal:

through our body language; gestures, touch; movement; our posture and gait and behaviour. Our facial expressions and how we use eye contact; how we present ourselves through our appearance. These are highly complex and require that we pay close attention to hear what the person is saying through their non-verbal communication. 

Behaviour:

is part of non-verbal communication, and the behaviours exhibited are open to interpretation. The National Institute for Health and Care Excellence (2015) recognises that ‘behaviour that challenges’… 

“…may serve a purpose for the person with a learning disability (for example, by producing sensory stimulation, attracting attention, avoiding demands and communicating with other people). This behaviour often results from the interaction between personal and environmental factors, including aggression, self-injury, stereotypic behaviour, withdrawal, and disruptive or destructive behaviour (NICE, 2015:5).

It is also essential to recognise that,

Behaviour that challenges’ is not a diagnosis” (NICE, 2015:5).

Please refer to the National Institute for Health and Care Excellence Pathway for further guidance on Learning Disabilities and Behaviour that Challenges.  

The person may have a sensory deficit, hearing or visual impairment, and wear a hearing aid or glasses. Communication will be impaired if either is missing.  

Considerations when communicating with someone with learning disabilities

Considering a person’s cognitive and literacy skills is essential: do they read, and what do they read? Does the person write? How do they write? And how complex is their writing?  

Do they recognise pictures, objects of reference, or are they reliant on a person who knows them well to interpret their communication or to scribe for them?

It is essential also to be aware of the person’s preferred language. They may communicate in a language other than English.

The person may use augmentative and alternative communication (A.A.C.) methods to support or replace spoken communication. A.A.C. methods include a wide range of techniques and resources, which include sign language and symbol systems, word boards, communication boards, picture books, and specialist equipment, communication systems Rebus symbols, Bliss symbols, photo-cards, Makaton sign language and British Sign Language often with an individual variation from the textbook system.

People with a profound level of learning disability have complex communication, which requires personalised approaches. They are likely to use early/preverbal and non-verbal communication. Strategies such as Intensive Interaction and A.A.C. methods can assist us in communicating with the individual. 

Note: use the person’s communication style; for example, this may be eye contact, facial expressions, body language. Communicate in a language they understand; this may require the assistance of an interpreter. Never assume a person cannot communicate.

Barriers to effective communication

A literature search on ‘barriers to effective communication’ will reveal barriers at many levels in many environments and cultures; these have been occurring over many decades. 

On an individual level, the barriers may include difficulties being understood by those around us, including health and care workers or difficulties understanding information being communicated. Information may have been presented so that the person does not understand, and this may manifest in expressed frustration at being misunderstood. For some people, this frustration can manifest in a change in their behaviour.  

I invite you to pause and reflect on your own experience where the recipient has not understood your communication. 

How did you respond? What change occurred in your behaviour?  

Some of the behaviours you identified may have been a challenge for those around you. At different times in our lives, we have the potential for our behaviours to present a challenge to others around us.

It is important to remember that behaviour is a form of communication. We all use behaviour in our communications. Our behaviours are open to interpretation. Sometimes people around us may not understand what we are saying through our behaviour. 

My current barrier

My current barrier is font size. If I don’t have my reading glasses, I won’t be able to read no matter how important the message is. If the written message contains and instructions, then I won’t be able to follow them. I am confident you will be aware of barriers to effective communication you have experienced yourself.

A breakdown in communication, such as text that is too small for the person to read, may result in unprepared or uninformed about the hospital/clinic/service/ treatment/procedure. They may lack the necessary information to reach an informed decision and consent to treatment. It may also have implications for the persons’ family, friends, health, and care provider.  

A communication breakdown can be distressing for all involved. It can also place people at significant risk of harm.

Individually we have a responsibility to break through these barriers and do what we can to achieve effective and successful communication with the person with a learning disability from our first encounter.

As Shea stated:

“From the first moment in which they see, hear, smell and touch each other, the clinician and the patient begin the engagement process…Even as simple a gesture as a handshake can lead to lasting impressions…Engagement refers to the ongoing development of a sense of safety and respect from which patients feel increasingly free to share their problems, while gaining an increased confidence in the clinician’s ability to understand them…”(Shea 2016; p.10)

Checking understanding

Regardless of who we are communicating with, individually, we will interpret what we see or hear the person is saying and sometimes we will misinterpret what is being said.

What is important is that we check our understanding with the person. Familiar people, such as family members or care providers, who know the person well are also vital resources to assist our understanding of what the person is saying.

Many people with a learning disability will have a ‘Hospital Passport’ or ‘Communication passport’. A comprehensive up to date ‘Communication’ section within these passports will help overcome some of the communication barriers. When you meet someone for the first time, it is good to ask them if they have a passport and show it to you.

Five good communication standards

In 2013 the Royal College of Speech and Language Therapists developed a Good Practice Standards for commissioners and providers. The standards identify the reasonable adjustments required to implement good communication within a hospital and in community settings with people with a learning disability and for those with a learning disability who also have autism.  

Standard 1: There is a detailed description of how best to communicate with individuals.

Standard 2: Services demonstrate how they support individuals with communication needs to be involved with decisions about their care and their services.

Standard 3: Staff value and use competently the best approaches to communication with each individual they support.

Standard 4: Services create opportunities, relationships and environments that make individuals want to communicate.

Standard 5: Individuals are supported to understand and express their needs in relation to their health and wellbeing. (RCSLT, 2013) 

“Implementing good communication is proactive and ethical as it prevents reactive and unethical restrictive interventions, …. Failure to make reasonable adjustments to meet communication needs will mean people with learning disabilities will continue to be vulnerable to a range of risks.” (RCSLT, 2013:2). 

To support the implementation of the standards, Leicester, Leicestershire, and Rutland Learning Disability Partnership Board co-produced a video, Gimme 5 Available at: http://vimeo.com/99419580  

Top tips for communicating with people with profound and multiple learning disabilities (PMLD)

1. Use communication methods in everyday life

2. Get going straight away − try different things out

3. Be creative − keep trying different things and don’t give up!

4. Create a communication passport so that other people understand how the person with PMLD who you support communicates

5. Remember − it doesn’t have to be expensive

6. Understand the communication that’s going on already

7. Share your own top tips with others

(Mencap, 2009:13)

Communicating pain or distress

Think for a moment about how you identify your pain. How do you communicate pain to others?

How do you know when a person you are working with is presenting with pain or distress?

As health and care workers, it is vital that those responsible for prescribing or administering analgesia know when to administer it. 

How does a person with a learning disability communicate they are in pain or distress? 

For people who communicate non-verbally, you will need to look for the signs and draw on information from others who know them well. A person who communicates verbally may tell you they are in pain using speech, sign language, A.A.C. They may also show you where the pain is and they may be able to tell you how they are feeling to indicate distress. 

The following questions (N.E.S., 2017: 79) may assist in the initial identification of pain or distress.

  • Is the person complaining of pain?
  • Is the person demonstrating the effects of pain (wincing or other bodily movements or simply holding themselves in a different manner)? 
  • Have the person’s vital signs changed (this includes temperature, respiration and pulse)? 
  • Does the person have discharge from their eyes, ears or nose? 
  • Does the person have bruises or other marks on the body?
  • Is the person maintaining weight? 
  • Has there been a change in the person’s mood or behaviour? 

These questions asked of the person and a person who knows them well may provide valuable information as part of an initial assessment. A more comprehensive assessment will assist in providing an accurate interpretation of the signs presented as the person communicates their pain or distress.

Distress recognition tools, e.g. the (DisDAT) to help identify when the person may be in distress 

Summary

Health and care workers play a vital role in meeting the health needs of people with a learning disability and acting as agents of change to reduce inappropriate labelling and diagnostic overshadowing.

Health and care workers must work together to overcome barriers to communication within health and care settings.

Effective communication requires that you make time to communicate effectively.

Take the time to learn how the person communicates and access the tools or support you need to communicate effectively, whether that is using accessible health promotion materials or objects of reference, pictures, symbols, gestures, body language, sign language, or communication passports.

Remember that people with PMLD have complex communication, which will require personalised approaches. 

Include the person in conversations about them. You may also include their family and people who know them well in the conversation. 

Ensure you put the person first.

Contact details for Jillian:

Jillian Pawlyn SFHEA | Field Lead – Learning Disabilities | Lecturer in Nursing, Learning Disabilities

Module Chair KYN210 Understanding nursing: knowledge and theory

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