Communication passports and total communication: how to record the way someone actually communicates

Most of the people I support do not use speech as their main way of communicating, and almost all of them are communicating constantly. The gap between those two facts is where services fail people. A communication passport and a total communication approach close that gap by writing down, in one place, how this person tells you they are in pain, what they want, what they have had enough of, and how you should talk to them so they understand.

The short answer

Every person in a learning disability or autism service should have a communication passport: a short, first-person document that says how they communicate, how you should communicate with them, and what their signals mean. Total communication is the approach behind it, which means using every available method at once rather than picking one. The passport is only useful if it is current, if it travels with the person, and if a bank worker on their first shift can read it in three minutes and get it right. This article covers what goes in a passport, the main methods including objects of reference, Makaton, PECS, Talking Mats and intensive interaction, and how to record pain, choice and distress for someone who cannot tell you in words.

What is a communication passport?

A communication passport is a short personal document, written in the first person, that describes how someone communicates and how others should communicate with them. It is not a professional report. It is a practical handover written for the person who has just walked into the room.

The idea came out of speech and language therapy work in the 1990s and spread because it solved a real problem: the information about how someone communicates was scattered across assessments nobody read. A passport pulls it into two or three pages, in plain language, with photographs, written as if the person is speaking. It says things like: if I take your hand and pull, I want you to come with me. If I rock and hum, I am content. If I rock and press my fist into my jaw, something hurts.

A good passport is specific and observable. It never says non-verbal, limited communication or challenging behaviour. It says what the person actually does and what it means, because the reader has to act on it today.

What is total communication?

Total communication is an approach that uses every available means of communication together, speech, signs, symbols, objects, photographs, writing, gesture, facial expression, technology and the environment, rather than choosing one method and expecting the person to fit it. The responsibility for successful communication sits with the service, not the person.

In practice it means a support worker speaking in short sentences while signing the key words, showing a photograph and pointing at the thing. It means the daily plan on the wall in symbols as well as words. It means giving someone time, which is the single most common failure, because most people with a learning disability need longer to process what has been said than the average conversational pause allows.

Total communication is also a legal expectation, not just good practice. The Accessible Information Standard requires NHS bodies and publicly funded adult social care providers to identify, record, flag, share and meet the information and communication needs of people with a disability or sensory loss. That is five separate duties, and most services do the first and skip the other four.

Why the passport is the most important document in the file

If I could keep only one document for a person with a severe learning disability, it would be the communication passport, because every other plan depends on it. A care plan is useless if the worker cannot tell whether the person is agreeing or complying. A pain protocol is useless if nobody recognises the pain.

Consider what goes wrong without it. Distress is read as behaviour and gets a behaviour plan instead of a dental appointment. A person is recorded as refusing a shower when they were actually saying not yet. Consent is recorded because the person did not object, which is not the same thing at all. A hospital ward sedates someone who was frightened rather than agitated. Every one of those is a communication failure written up as something else.

Who writes a communication passport?

The person writes it, with support. In practice it is put together by the people who know them best, usually a keyworker and the family, with a speech and language therapist involved where there is a complex or changing picture, and the person themselves contributing in whatever way they can.

It should not be written by a professional who met the person twice. The detail that makes a passport work, that Priya only takes her tablets if you put them on the left side of the tray, that Marcus signs finished when he means stop, comes from people who have watched for months. The SALT's job is to check it is accurate, to add technical detail about what the person can understand as opposed to what they can express, and to stop the team over-claiming.

Family involvement matters especially for people who moved into services as adults, because parents hold twenty or thirty years of signal vocabulary that nobody wrote down. Ask them directly: what does it look like when he is happy, sad, in pain, frightened, bored? Write the answers in their words.

What goes in a communication passport, section by section

A working passport has six parts, and it should fit on two or three sides of paper. Longer than that and nobody reads it.

1. About me. Name, what I like to be called, photograph, a few sentences about who I am, not my diagnoses.
2. How I understand you. Short sentences, one instruction at a time, key word signing, objects, how long to wait, what confuses me. Be honest about receptive understanding, because teams routinely overestimate it.
3. How I tell you things. My words and what they mean, my signs, my sounds, my gestures, my facial expressions, my behaviour. Set out as a signal and a meaning.
4. How I say yes and no. This deserves its own section because so much depends on it, including consent.
5. What I need you to do. Practical instructions: get to my level, do not stand behind me, use my aid, give me the object before you move me.
6. Getting it wrong. What happens if you misread me, and what to do to put it right.

Then a short table of signals is worth more than pages of prose, because it can be scanned. Something like: hand flapping near face means excited or overloaded, check the noise level. Pushing the plate an inch forward means finished. Going very still and quiet means frightened, not calm.

Communication approaches at a glance

Objects of reference

An object of reference is a real object used consistently to represent an activity, place, person or event, so that handing someone a towel means we are going for a bath and a seatbelt buckle means we are going out in the car. It is the most concrete form of communication and often the first to work.

The rules are simple and services break all of them. One object means one thing, always. The object must be given before the activity, with enough time for the person to process it, not while you are already moving their wheelchair. The object should be part of the activity where possible, so a swimming object is the actual swim bag rather than a plastic fish. The set must be the same at home, at the day service and on respite, or it means nothing.

Record the set as a list with photographs on the person's record, with the meaning and the date each object was introduced. When people move service, the objects should move with them, and I have seen more than one set thrown away in a clear-out because nobody knew what they were for.

Makaton

Makaton is a language programme that uses signs and symbols alongside speech, signing the key words of a sentence in spoken word order, so speech is supported rather than replaced. It is the most widely used signing approach in UK learning disability services.

The two things that go wrong with Makaton are inconsistency and staff confidence. If two people in a house sign and four do not, the person's signing stops, because nobody answers. The fix is organisational: Makaton foundation training for everyone who works with a person who signs, a sign of the week on the kitchen wall, and the person's personal sign list in the passport, including home-made signs, because almost everyone who signs has invented some.

Record signing properly. The passport should list the signs the person uses to express themselves, separately from the signs they understand, because those are very different lists and teams routinely confuse them.

PECS

PECS is the Picture Exchange Communication System, a structured six-phase programme in which a person learns to hand a picture to another person in exchange for what they want, then to build sentences and eventually to comment. It teaches the function of communication, not just vocabulary.

The phases run from a simple exchange, to travelling to find a partner, to discriminating between pictures, to building an I want sentence strip, to answering what do you want, to commenting on what they see. Knowing which phase someone is at matters, because a team that treats a phase two person as though they are at phase four will get nothing and conclude that PECS does not work.

PECS needs to be run the same way everywhere, which is where services fall down. If the book is left in the flat while the person goes to college, the programme stops. Put the phase, the vocabulary and who is responsible for the book on the record, and make the book part of the leaving-the-house checklist.

Talking Mats

Talking Mats is a visual framework that helps someone express views by placing option cards along a scale under a topic, so that a question like how do you feel about where you live becomes a set of pictures the person can physically sort. It is particularly good for reviews, capacity assessments and decisions.

It works because it removes the memory load and the pressure of a conversation, and because the result is visible: a photograph of the finished mat is evidence of the person's views in a way a note saying he seemed happy is not. Take that photograph, attach it to the record, and refer to it in the review.

Use it carefully. The options you offer shape the answer, and a mat done badly can produce a false record of consent. Record the exact question, the options offered, who supported, and anything the person did that did not fit the mat.

Intensive interaction

Intensive interaction is an approach in which the worker joins in with the person's own sounds, movements and rhythms, echoing and responding, to build the fundamentals of communication: attention, turn-taking, eye contact and shared enjoyment. It is used with people at a pre-intentional or early intentional stage.

It looks like doing nothing, which is why it gets squeezed out by task-focused shifts, and why managers have to protect it. If the plan says twenty minutes of intensive interaction a day, that time has to be in the rota like any other support, or it will not happen.

Record it simply: how long, where, what the person did, what you responded to, how they reacted, and how it compared with last time. Over months those records show progress that nothing else captures, and they are powerful evidence at a review, because they show the service working on the person's life rather than their tasks.

Aided communication, symbols and devices

Aided communication covers everything from a laminated choice board to an eye-gaze speech-generating device, and the rule is the same throughout: the aid has to be available, working and used. A device in a drawer is not a communication system.

Specialist AAC services assess and provide the higher-tech equipment, and access varies by area. Where a person has a device, the service's job is unglamorous: charge it, mount it where they can reach it, take it out with them, keep the vocabulary updated, and make sure every worker can use it. Put charging on the daily task list and put the device on the outing checklist, because the most common reason a device is not used is that it was flat.

Low-tech aids matter as much. A choice board with today's two real options, photographed and attached to the person's record, is often more useful than an app nobody has been trained on.

Easy read, and what actually makes it easy

Easy read is a format that pairs short, simple sentences with a supporting image, one idea per line, in a large clear font, designed so that a person can follow it with support. It is a format, not a translation, and most easy-read documents in circulation are neither easy nor read.

The rules that matter: one idea per sentence, active voice, no jargon, no metaphors, numbers as digits, dates written in full, a picture that illustrates the point rather than decorating it, and text at 14 point or larger. Test it with the person, because an easy-read document that has never been read to anybody is a document produced for the file.

In practice, every person should have an easy-read version of their care plan, their health action plan and their house agreement. Keeping those in step with the professional version by hand is the part that fails, which is one reason to hold both versions in the same record. Our guide on how to write a person-centred care plan covers the plan itself, and person-centred care plan examples for learning disability services shows what the easy-read version looks like next to the professional one.

How do you record how someone communicates pain?

Record pain communication as a baseline and a change: what this person looks and sounds like when they are comfortable, and what specifically changes when they hurt. Without the baseline, a new worker has nothing to compare against, and pain gets recorded as behaviour.

Structured tools help. DisDAT, the Disability Distress Assessment Tool, is designed exactly for this: it records the person's usual appearance, sounds, habits, posture and mannerisms in a content state, then the signs of distress, so any observer can spot a difference. The Abbey Pain Scale is useful for people with advanced dementia. For some people a simple faces scale works. Whichever you use, the output belongs on the person's profile, not in an assessment folder.

The passport should carry a plain pain section that says things like: when Jordan's shoulder hurts he holds his left arm tight to his body, stops using his right hand to eat, and goes quiet at mealtimes. Then the protocol: check the mouth, check for constipation, check the ears, offer paracetamol 1g as prescribed, record the response after an hour, and call the GP if two doses in a day do not help. Diagnostic overshadowing, where a new symptom is put down to the learning disability, is one of the biggest killers in this population, so the record should make it hard to shrug something off.

Distress, behaviour as communication and the overlap with PBS

Behaviour that services find difficult is almost always communication, and the two documents that explain it are the communication passport and the positive behaviour support plan. They should be written together and they should say the same things.

The passport says what the signal means. The PBS plan says what to do about it. If the passport says that Marcus pacing the hallway means he is anxious about a change, the PBS plan should have pacing as an early warning sign with a named response. If they disagree, the team follows whichever they read last, which is the worst of both.

ABC recording is where the two meet in daily practice. A well-written antecedent column often turns out to be a communication record: he was told no, the music was loud, someone stood behind him. Our guides to ABC charts and a worked PBS plan cover the mechanics of both.

Recording choice and consent for someone without speech

For a person without reliable speech, a record of consent must say how the question was asked, what the person did, and why the worker read that as agreement. Recording that the person consented, with nothing else, is not evidence of consent and will not survive a capacity challenge.

The practical standard I use is this. Say how the choice was presented: two objects offered, a photograph shown, a Talking Mat, a spoken question with a five-second wait. Say what the person did: reached for, pushed away, looked at for several seconds, turned away, said the word. Say what that means for this person, referring to the passport. And say what was offered as the alternative, because a choice of one is not a choice.

Consistency across a team matters more than the method. If three workers interpret the same gesture three ways, nobody knows what the person wanted, and the record is worse than useless. That is why the yes and no section of the passport should be the one part every worker can quote.

Jordan: choice at the front door

Jordan, 29, has cerebral palsy and a moderate learning disability, uses around forty Makaton signs and a symbol board, and is very clear once you know him. His records said he refused activities four times in one week.

What was actually happening was that he was being asked at the front door, with his coat already on, whether he wanted to go swimming. He signed no, which was read as refusal of swimming. When staff started offering the choice an hour earlier, with two photographs and no coat, he chose swimming most weeks. He had not been refusing swimming. He had been refusing the way he was being asked.

Two changes fixed it. His passport gained a line: ask me about an outing at least an hour before, with two pictures, and give me time to answer, because if you ask me at the door I will say no. And the daily record gained a field for how the choice was offered, so the same pattern could be seen next time rather than becoming a note about non-engagement.

Priya: pain that looked like refusal

Priya, 46, has Down's syndrome and early onset dementia. Over six weeks she became reluctant to eat, pushed staff away at personal care and started sleeping badly. The house discussed whether her dementia was progressing.

Her DisDAT record, which described her content state in detail, showed three clear changes: she had stopped humming while being dressed, she was holding her right jaw, and she had begun refusing hot drinks she normally liked. A dental examination under sedation found two abscessed teeth. After treatment, the humming came back within a fortnight.

That is diagnostic overshadowing caught, and it was caught only because someone had written down what Priya was like when she was well. The lesson for the service was to review the DisDAT baseline annually and after any significant change, and to treat any change in a documented content-state signal as a health question before it is anything else.

Marcus: a passport nobody used

Marcus, 34, has a severe learning disability and is autistic. He had a beautiful twelve-page communication passport produced by a SALT student. Nobody had read it, because it was twelve pages and it lived in the office.

The rewrite cut it to two sides. Page one: who I am, how I understand you, how I tell you things, how I say yes and no. Page two: my signals table, my objects of reference, what to do if you get it wrong, and three photographs. It went on the front of his electronic record so it opens before anything else, printed in his flat, in his bag, in his hospital passport and at the day service.

The test I now use for any passport is this: hand it to someone who has never met the person and ask them to tell you three things the person does and what they mean. If they cannot after three minutes of reading, the passport is too long. Holding it on the person's profile rather than in a folder is exactly the kind of thing a learning disability care management platform should do by default, so the passport appears on every worker's phone before the daily notes do.

Where the passport must live and travel

The passport should exist in at least five places: the front of the person's electronic record, printed in their home, in the bag that goes out with them, with the day service or college, and inside the hospital passport. A single copy in an office is the same as no copy.

Hospitals are where it matters most and where it is least likely to be read, so the communication information should be on the first page of the hospital passport rather than buried behind medical history. Our guide to hospital passports covers the format and how to keep them current.

Every copy needs a date. The most dangerous passport is the confident, well-designed one that is three years out of date, because staff believe it. Version control is a boring problem with a boring solution: generate every printed copy from the record, never type a second version, and log who received it. If you run supported living software across several houses, that log is also how you prove the day service and the family got the current version.

Keeping it current: what should trigger a review?

Review a communication passport at least annually, and immediately after any of these: a hospital admission, a new diagnosis, a change in hearing or vision, a new medicine that affects alertness, a change in the person's signals, a move, a bereavement, or any incident where a worker misread the person.

That last trigger is the one services miss. An incident in which someone became distressed because a worker did not understand them is a communication passport review, not just an incident form. Build the link into the incident process: a tick box asking whether communication contributed, and if yes, a task to review the passport with a due date.

Hearing and vision deserve particular attention. People with learning disabilities have much higher rates of undetected hearing loss and visual impairment, and a person whose communication has deteriorated may simply have stopped being able to hear you. Annual health checks should cover both, and the passport should record what aids the person uses and whether they are working.

Training staff to use it

Reading the passport should be part of induction for every worker, bank and agency included, before their first shift with the person, and it should be signed off by name and date. Training in the methods the person uses, whether that is Makaton, PECS or intensive interaction, should follow within an agreed period.

Shadowing is the part that actually teaches it. A new worker reading that Marcus signs finished when he means stop will not really understand until they see him do it. So pair the passport with a shadow shift and a short competency conversation: show me how you would offer Jordan a choice, tell me what Priya looks like when she is content.

Record the sign-off against the person, not just against the worker, so a manager can answer the question every inspector asks, which is whether the people on shift tonight have read this person's communication plan. Decent care planning systems let you attach that acknowledgement to the plan itself, so the evidence is a report rather than a folder of signatures.

What does an inspector ask about communication?

Inspectors ask staff, not managers. The usual questions are: how does this person tell you they are in pain, how do you know when they have had enough, how do you offer them a choice, and where is that written down. A worker who can answer those without looking anything up is the strongest evidence a service can produce.

They will also look for the Accessible Information Standard in practice: is the communication need recorded, is it flagged so it cannot be missed, is it shared with the GP and the hospital, and is it met. And they will look at whether the person's own voice appears in their records, in their words or their signals, rather than only professional summaries.

Expect questions about consistency too. If the passport says one thing and the PBS plan says another, or if three workers describe the same signal differently, that is what gets written up. The evidence inspectors look for is a team that speaks about a person in the same way because they are all working from the same document.

Common mistakes

• A passport that describes deficits rather than what the person does and what it means.
• Twelve pages nobody reads instead of two pages everybody does.
• Confusing what the person understands with what they can express.
• One copy, in the office, never printed, never taken out.
• No date, no version control, and a second copy typed by hand at the day service.
• Methods used inconsistently, so signing or PECS dies out because nobody responds.
• Recording consent without recording how the question was asked.
• Treating distress as behaviour without checking pain, hearing, vision and the mouth.
• A device left uncharged, a PECS book left at home, objects thrown out in a clear-out.
• Never updating after a hospital stay or a change in the person's signals.

Final conclusion

A communication passport is the document that makes every other document work. Write it in the person's voice, keep it to two sides, say what the signals mean rather than what the person cannot do, and be honest about the difference between understanding and expression. Use total communication, meaning everything at once, and give people time. Record pain as a change from a described baseline, record choice by saying how the question was asked, and review the passport whenever somebody misreads the person. Get that right and the rest of the care plan has something solid to stand on.

Frequently asked

What is a communication passport?

A communication passport is a short document written in the first person that describes how someone communicates and how others should communicate with them. It sets out their signals and what those signals mean, how they say yes and no, and what a new worker should do. It is usually two or three pages with photographs.

What is total communication?

Total communication is an approach that uses every available method together, speech, signs, symbols, objects, photographs, gesture, writing and technology, rather than expecting the person to use one method. The responsibility for making communication work sits with the service, not the person.

What is the difference between Makaton and PECS?

Makaton uses signs and symbols alongside speech, signing the key words in spoken word order, so speech is supported rather than replaced. PECS is a structured six-phase programme in which the person exchanges a picture for something they want, which teaches the function of communication. Many people use both.

How do you record that someone with no speech is in pain?

Record a baseline of what the person looks and sounds like when they are comfortable, then record what specifically changes. Tools such as DisDAT and the Abbey Pain Scale structure this. Put the baseline and the changes on the person's profile, with a protocol saying what to check and when to call the GP.

Who should write a communication passport?

The person, with support from the people who know them best, usually a keyworker and the family, with a speech and language therapist checking accuracy and adding detail about receptive understanding. It should not be written by a professional who has met the person twice.

How often should a communication passport be reviewed?

At least annually, and immediately after a hospital admission, a new diagnosis, a change in hearing or vision, a new sedating medicine, a move, a bereavement, a change in the person's signals, or any incident where a worker misread them.

What is the Accessible Information Standard?

It is a standard requiring NHS organisations and publicly funded adult social care providers to identify, record, flag, share and meet the information and communication needs of people with a disability or sensory loss. Most services record the need and then fail to flag, share or meet it.

What are objects of reference?

Objects of reference are real objects used consistently to stand for an activity, place, person or event, such as a towel meaning bath time or a seatbelt buckle meaning a car journey. One object means one thing, it is given before the activity with time to process, and the same set is used everywhere the person goes.

Sources

• NHS England: Accessible Information Standard (DCB1605)
• Royal College of Speech and Language Therapists: guidance on communication and people with learning disabilities
• Makaton Charity: guidance on the Makaton Language Programme
• Talking Mats: guidance on using the framework in health and social care
• Northern Ireland Cancer Network and St Oswald's Hospice: DisDAT Disability Distress Assessment Tool
• Care Quality Commission: single assessment framework and Right support, right care, right culture
• Mencap: communication and involving people with a learning disability
• NICE guideline NG93: Learning disabilities and behaviour that challenges, service design and delivery