Reading time: 23 mins

Your rights as an AAC user

It is important that you know your rights as an AAC user. This is a resource I’ve pulled together for AAC users, their families in the UK, specifically around the Mental Capacity Act, Deprivation of Liberty and Safeguarding.

Nothing about us without us

As an augmentative and alternative communication (AAC) user, you have the right for your views and your voice to be heard in all decisions relating to how you choose to live your life, your care and support, just like everyone else. There should be ‘nothing about you without you’, in other words, no decisions about your health, social care or finances should be made without your input.

I’ve written this as an AAC user, drawing on my lived experiences and my studies in social policy at both the undergraduate and postgraduate levels. This is my personal take on legislation, and my advice is to always seek impartial advice if you have concerns about your situation, as we are all unique.

This guide is broken into 3 sections

Section 1: About AAC and AAC users

What is AAC, and who uses it?
Key information you need to know.

Section 2: Mental Capacity

The United Nations Convention on the Rights of Persons with Disabilities.
The Mental Capacity Act, assessing capacity, your rights to make your own decisions, and deprivation of liberty.
Advance statements, advance decisions, lasting power of attorney, the Court of Protection and the duties of professionals.

Section 3: Safeguarding

Safeguarding and everyday life
Using AAC and making a disclosure

N.B.

Legislation in the United Kingdom can be tricky as many decision-making powers are ‘devolved’. This means the 4 home nations; England, Northern Ireland, Scotland and Wales, can have slightly different rules and regulations.

Section 1:

About AAC and AAC users

What is Augmentative and Alternative Communication (AAC)?

First and foremost, AAC is your voice, whatever format, method, or mode you use. Those around you should always make certain that you have access to your resources and that they are charged and positioned correctly.

‘AAC resources are described as the [….] tools and strategies that an individual uses to solve everyday communication challenges’ (Burkhart, 2011).

There are four different types of AAC people use to communicate, individuals change communication strategy depending on their environment and situation: using body language, facial expression, eye movement, support from a communication partner, use of communication books and boards, or powered voice output communication aids (VOCA). These methods can be used simultaneously or discretely, but whatever method of communication individuals choose, all are equal and valuable (Robinson, 2026). Powered AAC, when introduced around 40 years ago, was originally categorised into two types of VOCA: specialised devices with single or multiple pre-recorded messages versus those with dynamic screens storing multiple pages of symbols, graphics or text (Communication Matters, 2026). However, evolving mainstream technology means touchscreen tablets with text-based communication software are being used by new cohorts of AAC users, such as those with autism, some of whom may not need specialised assessments for complex language and access solutions to communicate (Murray et al., 2024; Young, 2018).

Who uses AAC?

Four groups of individuals use AAC (Murray et al., 2024); their conditions include:

Neurological disabilities such as cerebral palsy, autism, and childhood apraxia of speech.
Acquired conditions include traumatic brain injury and stroke.
Progressive conditions impacting communication, such as muscular dystrophies, Parkinson’s Disease, and dementia.
Short-term or transient conditions due to surgery, selective mutism or anxiety.

As AAC users, we are just like the rest of the population; we come in all shapes and sizes. No one should assume that using communication resources or mobility equipment means a lack of cognition, an inability to take part in sporting activities, or that they take medication daily. Many AAC users are fit and healthy individuals leading fulfilling lives, we may work, have been to university, live independently and have our own families. It is important that those around us and providing services assume and presume our competence, treating us as equals.

Key information for AAC users

In my book, I recommended that all AAC users consider having a document for education and health care providers that outlines how they communicate, the equipment they use and how to charge it. This should also include key contacts and, if appointed, names of nominated advocates (Moulam, 2027) or attorneys.

AAC is essential for anyone who has little or no speech; it is your voice, your way of being heard, listened to and understood. However, it is also a high-value resource, especially when you take into account the cost of technology and other equipment, as well as the time and effort required to create and personalise your resources. If these are broken or lost, they often cannot be replaced immediately, which might make communication more challenging.

Many hospitals and care settings advise you not to take expensive technology when you are admitted; this does not mean leaving your essential communication resources at home. Your AAC device is your voice, and you will want to be heard. When you are admitted to stay, you should ask for your essential communication resources to be noted on your admission records. Then ensure your resources are photographed alongside the admissions paperwork and records. This becomes a record of what equipment you use, take with you and what you own/use in the event of loss or damage (Moulam, 2027).

What the law says:

Communication is a human right, your voice matters, you have the right to be heard, always.

Section 2:

Mental Capacity

Overview

In the United Kingdom, your rights are mandated by the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) because we have ratified the treaty.

Article 12 (2006) means all people, including those who use AAC, have ‘Equal recognition before the law’.

The UNCRPD differentiates between:

Mental capacity or decision-making skills, and
Legal capacity the right to hold and exercise individual rights.

Whatever your situation as a disabled person, you have the right to make your own decisions because everyone is equal before the law.

In the UK, the Mental Capacity Act (MCA) (2005) was updated in 2019 and is currently under consultation again in 2026. The MCA applies to anyone over the age of 16 and is there to protect and empower anyone who may lack the mental capacity to make their own decisions about their care and treatment.

There are different safeguards in place to support your decision-making. You might lack the capacity to make decisions about complex financial issues, but you could easily be competent to make decisions about your everyday life, your health and your care.

Some people may lack capacity permanently or temporarily if they have certain conditions. These may include dementia, a severe learning disability, a brain injury, a mental health condition or a stroke. On occasions, this ability may fluctuate, e.g. if you are unconscious through an accident or anaesthetic.

The Mental Capacity Act states:

We must assume everyone can make their own decisions unless proven otherwise.
We must help people to make their own decisions.
Making an unwise decision is not a reason to assume someone is lacking in capacity; this is something anyone can do.
Any decision made for someone who lacks capacity must always be in their best interests.
Treatment and care for someone who lacks capacity should be the least restrictive of their basic rights and freedoms.

Mencap has produced an easy-read guide to the Mental Capacity Act.

Making your wishes known to others

The MCA states that if you can make a decision and express your preferences for your future care and treatment, you should plan for this in advance, in case there comes a time when you are unable to make your wishes known. Make sure you formally appoint a trusted person to make any decisions in accordance with your wishes and best interests, or appoint an independent advocate.

There are various ways to do this, including:

Advance statements

An advance statement is a written statement that sets down a person’s preferences, wishes, beliefs and values regarding their future care. It’s not legally binding, but your wishes must be considered in any decision made about you. More information is available from the NHS

An advance decision

This is also known as an advance decision to refuse treatment, an ADRT, or a living will. This is a legally binding decision that allows someone aged 18 or over, while still capable, to refuse specified medical treatment for a time in the future when they may lack the capacity to consent to or refuse that treatment. More information is available from the NHS

Lasting Powers of Attorney

You can grant a Lasting Power of Attorney (LPA) to another person (or people) to enable them to make decisions about your health and welfare, including consent to medical treatment, and/or decisions about your property and financial affairs. LPAs are legally binding documents that allow your appointed Attorney to make decisions on your behalf, but only once you are unable to make decisions for yourself. Separate legal documents are made for each of these decisions, appointing one or more attorneys for each.

When acting under an LPA, an attorney (the appointed person) must ensure the MCA’s statutory principles are followed by checking whether you have the capacity to make that particular decision for yourself – if you do, the welfare LPA cannot be used, and you must make the decision yourself. More information is on the Government website on about Power of Attorney

You may wish to take a mental capacity assessment at the time you make an advance statement, advance wishes and/or a lasting power of attorney. The benefit of this is that no one can later question that you did not know what you were agreeing to or signing when the decisions were made. If you make an advance decision, you may wish to consider letting your family, friends and carers know about it.

The Court of Protection

The Court of Protection oversees the operation of the Mental Capacity Act and deals with all issues, including financial and serious healthcare matters, concerning people who lack the mental capacity to make their own decisions. The court also tries to resolve all disputes when the person’s carer, healthcare worker, or social worker disagrees about what’s in the person’s best interests, or when the attorneys’ views conflict regarding property and welfare. The court hears important cases, such as whether the NHS should withdraw treatment, whether a serious medical treatment decision is in a person’s best interests, or whether it’s in a person’s best interests to be deprived of their liberty. Cases can be brought to court by family members, as well as by advocates and professionals involved in the decisions.

Professionals’ duties under the Mental Capacity Act

The Mental Capacity Act applies to all professions – doctors, nurses, social workers, occupational therapists, healthcare assistants, and support staff. These staff and their employers have a duty to ensure they know how to use it. Most trusts and local authorities will have a Mental Capacity Act lead who provides specialist advice on how the Act works.

Assessing mental capacity

There is a 2-stage test for mental capacity, which takes into account of a variety of factors:

The ability to make a specific decision when needed, taking into account that some people might be able to make some types of decisions but not others, e.g., managing your financial affairs is different to managing your care and day-to-day support. An assessment must also take into account fluctuating mental capacity over the course of a day due to fatigue, medication, or other factors.
Whether you have an impairment of the mind or brain as a result of illness, accident or external factors such as alcohol or drugs.

This means you may need to be allowed time to make the decision yourself, and other people can only make the decision for you if it is clear you are unable to understand 1 or more factors:

To understand the information relevant to the specific decision.
To retain the information long enough to make the decision.
Use or weigh up the information as part of the decision-making process.
Communicate your decision in any way.

This means it is important that if you use AAC, you have access to your usual resources and support in making and conveying your decision. This includes:

Always having access to your communication aid, communication book, and any visuals you usually use. Any electronic or powered devices must be charged and ready to use.
Being seated appropriately to use your resources, or having your access adapted so you can use them if you need to recline or be laid down.
Having a trained communication partner who is familiar with your communication, this might be a family member, someone from your support team, or a professional who knows you. In the event this is not possible, then you might be supported by a professional used to working with the AAC resources you use and who understands the complexities of AAC access, e.g. an AAC specialist from the NHS regional assessment centre.

Help to make your own decisions

Before deciding if a person lacks capacity, it’s important for professionals to take steps to enable you, the AAC user, to try to make the decision yourself. For example:

Do you have all the relevant information you need?
Have you been given any information about alternatives?
Could information be explained or presented in a way that’s easier for you to understand, e.g. using a familiar symbol set, signing if they use BSL or Makaton, the use of plain language, using visuals including diagrams, reading aloud the options or having access to a text reader?
Have different methods of communication been explored with you, such as non-verbal communication? Are professionals and others familiar with your yes/no signals, e.g., eye movements, facial expressions, or body language?
Have professionals had the discussion with you and your familiar communication partner present? This could be a family member, carer or advocate. It is not enough to discuss a situation only with a family member and not include you.
Are there particular times of the day when your understanding is better than others? AAC users frequently experience fatigue; some people find it easier to communicate at different times of the day, e.g. after breakfast when you are refreshed and nourished. Make sure they check with you frequently that you are OK to continue, and that if you need a break or ask for a time out, it should be honoured.
Using AAC is not the same as having natural speech. It can take longer for some AAC users to process information; some people have to ‘translate’ any message they hear into their own AAC language (a bit like speaking a second language), process this and then recode the information to programme a communication device. Outputting your message is then a physical task which takes additional energy, coordinating the right body parts to make yourself understood.
Often, the types of decisions being considered are life-changing. We would not expect anyone else to make this type of decision without taking time to think and consulting their family and friends. You should not expect to make an immediate decision; give them time to process what is happening, understand the options, ask others for their opinions, and be given the time you need.
Thinking time and space are important for everyone. A professional should provide everything you need and then leave you with someone you trust to discuss any matter further. If possible they should provide you with information in advance in writing so if needed a communication partner can help you understand it and give you time to make a decision before a meeting. If necessary, chunk the decision meeting into a series of shorter meetings.
If you use symbols or rely on someone to spell new words for you, it is important that you are provided with the support you need to pre-programme your communication resources with the vocabulary relevant to the decision you need to make.
Identify any locations where you may feel more at ease. For instance, if you are on a hospital ward it may be too noisy or too bright to use AAC effectively, is there a quiet room where you can be undisturbed and pull down a blind, so sunlight does not reflect on the AAC screen?
Always ask whether the decision can be delayed until you are better able to make it. For instance, when you return home.

You can still be judged not to have capacity, yet be able to make your own decisions

There are recent changes around Deprivation of Liberty (see below) which means your views, opinions and ability to make decisions should still be taken into account even if you have been judged not to have mental capacity.

What happens if you are judged not to have capacity?

Is the decision in your best interests?

If someone lacks decision-making capacity and the decision needs to be made for them, the MCA states that it must be made in the individual’s best interests. The MCA sets out a checklist to consider when deciding what’s in a person’s best interests. It says they (those consulting you) should:

Encourage participation: make every effort to permit or encourage you to take part.
Identify all relevant circumstances: try to identify the things you would take into account if they were making the decision themselves, e.g. where do you live now, and how are you usually supported, can this decision still work and if not, why not?
Find out your views, including their past and present wishes and feelings, and any beliefs or values, and check that you have this documented.
Avoid discrimination: do not make assumptions on the basis of age, appearance, condition or behaviour
Assess whether you might regain capacity – if they might, could the decision be postponed?

It’s vital for professionals to consult with others for their views about your best interests if, for some reason, you cannot contribute. In particular, they should consult:

Anyone previously named by you.
Anyone engaged in caring for you.
Close relatives and friends, for a child, this would normally be a parent or guardian.
Any attorney appointed under a Lasting Power of Attorney.
Any deputy appointed by the Court of Protection to make decisions for you.

Finding the least restrictive option

Before anyone makes a decision or acts on behalf of someone who lacks capacity, they should always question if they can do something else that would interfere less with your basic rights and freedoms. This is called finding the “least restrictive alternative”. It includes considering whether there’s a need to act or make a decision at all.

Any decision or action must still be in the best interests of the person who lacks capacity. Sometimes it may be necessary to choose an option that is not the least restrictive alternative if it is judged to be in your best interests. For an AAC user, it is best to plan in advance; your wishes count, so ensure they are documented.

Deprivation of liberty

In June 2026, there was a new Supreme Court Ruling (DHSC, 2026) on the assessment for DoL. This specifically states that being assessed as lacking mental capacity is no longer a criterion for determining whether DoL should take place. The definitions for DoL now say:

A person can give valid consent if they are conscious of their environment, have a basic level of understanding and are capable of expressing a view that they accept and/or are happy with the situation.
This applies in hospitals and care homes for those over 18, and for children and those over 18 who have a legal Deputy appointed by the Court of Protection.

Deprivation of liberty should now be assessed using multiple factors:

the type of restrictions (for example, locked doors, physical control, supervision, sedating medication, social isolation and so on)
the duration of those restrictions
the effects of the restrictions on the person
the manner of implementation of the restrictions
whether the person objects (attempts to leave, refusal to take medication, physical restraint or 1-1 support for behaviour, the use of sedation to ‘manage’ a situation
how far removed the case is from the situation of detention in a prison cell
the relative normality of the arrangements (for example, greater restrictions would be required at home in order for deprivation of liberty to arise)
the purpose of the arrangement, for example, whether the arrangements are for care and protection, rather than punishment or coercion.

For there to be a deprivation of liberty, there must be an element of restriction being imposed on a person against their will. This means that it is unlikely to be a DoL if a person’s liberty is constrained by their own illness, condition or impairment. For example, if someone’s physical disabilities prevent them from leaving a particular setting and they are unable to form any desire to leave, this will likely not be considered a deprivation of liberty.

This poses a concern for AAC users, particularly those who use mobility equipment e.g. if you are unable to leave a hospital bed without assistance, need to be ‘helped’ into a powerchair, and need AAC to be mounted so it is accessible then will you be able to demonstrate your intent to leave and have a voice to object, remembering of course that all the equipment needs to have been charged?

If you or your advocate suspect a deprivation of liberty may occur, talk to the care provider and then possibly the local authority. They must always make sure a DoL assessment takes place, and the AAC user’s family, carers, or advocate are present.

Section 3:

Safeguarding and everyday life for AAC users

Safeguarding is the process of protecting your health, well-being, and human rights, enabling you to live safely, free from harm, abuse, and neglect.

This means society and those supporting you have the responsibility of creating safe environments, implementing preventative procedures, and responding appropriately to your concerns, particularly if you are under 18 or you are an adult with some form of disability.

Safeguarding means that we all have an equal right to respect, dignity, and to feel safe at all times. Children and vulnerable adults must be kept safe from harm, abuse and/or neglect always (Social Care Institute for Excellence, 2021). It does not mean you should live in a cotton-wool environment, but that your well-being comes first, and if there is an issue, it is treated with urgency, taken seriously, and dealt with through due process.

As an AAC user, you have the same rights and entitlements as everyone else. It is important that those who support you in both your home and the wider community understand that having a communication impairment does not mean you have misunderstood a situation, or that you are wrong if something happens. Just because you use AAC does not mean a naturally speaking person should have a more powerful voice.

Sadly, 3 groups of people are more at risk than the general population, these are older people, disabled people and those with communication impairments as perpetrators often think you may not know you are experiencing unacceptable treatment and you will find it difficult to complain or raise an issue.

There are 6 safeguarding principles for professionals working with you

These are empowerment, prevention, proportionality, protection, partnership and accountability.

Empowerment

I am asked what I want, knowing that I am heard, listened to and understood.

You, as an AAC user, should know your rights and be able to identify when something is not as it should be. When you are empowered, it is much harder for a perpetrator to say, ‘you misunderstood’.

Prevention

I am provided with clear information about abuse and neglect in a way I can understand. I know when things are not right, and I know how to get help.

It is always better to attempt to prevent action before harm happens.

Always make sure anyone working with you has a Disclosure and Barring Service (DBS) enhanced check. If you are unsure, ask their employer and ask to see their record of when they were last checked. If you are the employer, you should ensure you obtain a DBS check as part of the appointment process when taking on new people. But remember, the check is only as good as the day on which it was taken.

A second way of preventing issues is to ensure all staff working with you know what safeguarding means, what it means for you, and that you have in place processes and procedures to raise an issue. For instance, that you have trusted people who support you and whom you confide in, that in the event of a safeguarding issue, and you alerting people, then it will bring trusted people to your home.

Another strategy for an AAC user is to consider the different types of abuse or neglect below and ensure you have vocabulary available to use if something happens that you think is unacceptable. All AAC users should have easy access to saying “no,“ “stop,“ and “don’t do that,“ and feel able to use these words when needed.

Saying no is never easy for an AAC user as we often want to keep on the side of those people we rely on to make things happen in our lives.

What 3 words is a strategy that can support you in getting help when you need it. Your safety is always paramount. Consider having a few keywords that are known to people you trust, and if you use them they will immediately come to find you. These are simple words that can be slipped into any conversation to alert others to the fact that you feel unsafe or in danger. This might be asking about a non-existent friend, a pet who is no longer with us, or when you can do a specific activity (that those you trust know you don’t like). If you use these words verbally, in a message, or an email, then the recipients should take immediate action for you.

Proportionality

I know the professionals I work with will act in my best interests and will be as least intrusive as possible

Taking action in a proportionate way is important; this means approaching things in the least intrusive way possible. Sometimes accidents and mistakes happen, especially with new staff. Maybe they are rushing and clumsy, or maybe they didn’t fully take on board the instructions the first (second or third) time. Always ask yourself if what is happening is a one-off or due to a lack of training and education. When there is a minor issue, raise this with the staff member promptly, with someone to support you if you need, e.g., they have been clumsy. If you have provided training already then check if there is a pattern to what is happening, could it be the result of a misunderstanding and is more training needed.

If something happens that is more serious, and you feel there is an issue due to abuse or neglect, then you must take action. Talk to someone you trust and agree on what needs to happen to resolve the situation.

Protection

If I report abuse or neglect, I know I will get the help and support I need to take part in the process so I can share my views and feelings.

As an AAC user, you are likely to have people around you whose job it is to help you be safe. Their role is to be there for you, to take action if needed, and to represent your interests if abuse or neglect occurs.

Abuse is physical, emotional or mental harm.

Neglect is not being provided with the care or support you need.

It is important to understand the different actions that can cause abuse or neglect, and how this makes you feel. These actions, unfortunately, can happen to anyone, not just AAC users.

Partnership

I will feel confident that any information I share with professionals will be kept confidential and shared with others only where necessary, and that they will work together in my best interests.

When you have a disability, and especially if you use AAC, it is the role of all those around you, including in the community, to ensure you feel safe. This partnership approach means social workers, health professionals, teachers, care workers, and others should all be working in your best interests, being aware of any potential risks to your safety and reporting abuse or neglect if they see it.

Accountability

I understand the role of everyone in my life and what they should do

If a safeguarding incident occurs, the local social services team has a duty to investigate with everyone involved. You do not need to receive funding or services from social services; they have a responsibility for all adults in their area with a disability, including those who use AAC.

Types of abuse and neglect (SCIE, 2023)

Physical abuse includes:

Assault, hitting, slapping, punching, kicking, hair-pulling, biting, pushing.
Rough handling.
Scalding and burning.
Physical punishments.
Inappropriate or unlawful use of restraint, restricting movement (e.g. tying someone to a chair).
Making someone purposefully uncomfortable (e.g. opening a window and removing blankets).
Involuntary isolation or confinement.
Misuse of medication (e.g. over-sedation or refusing to administer it).
Forcible feeding or withholding food.

For an AAC user, this might include withholding access to an AAC resource until you comply with an action or leaving you somewhere without your AAC resources.

Boundaries are important when someone is working with you as an AAC user. Make sure you share with people the best way to support you, for instance, not to lean over your chair or crowd you with their body if they are trying to look at your screen.

Sexual abuse includes:

Rape, attempted rape or sexual assault
Inappropriate touch anywhere
Non- consensual masturbation of either or both persons
Non- consensual sexual penetration or attempted penetration of the vagina, anus or mouth
Any sexual activity that the person lacks the capacity to consent to
Inappropriate looking, sexual teasing, innuendo or sexual harassment
Sexual photography, or forced use of pornography or witnessing of sexual acts
Indecent exposure

No one should use your AAC resources to access pages or page sets that refer to intimate body parts, except with your consent and then only for a valid reason.

Whilst not directly related to your use of AAC, ask those supporting you to wear suitable clothing, as they may often need to be close to you or lean over; low-cut tops, short skirts, and sweaty armpits are not always welcome.

Psychological or emotional abuse includes

Enforced social isolation – preventing someone from accessing services, educational, and social opportunities and seeing friends
Removing mobility or communication aids or intentionally leaving someone unattended when they need assistance
Preventing someone from meeting their religious and cultural needs
Preventing the expression of choice and opinion
Failure to respect privacy
Preventing stimulation, meaningful occupation or activities
Intimidation, coercion, harassment, use of threats, humiliation, bullying, swearing or verbal abuse
Addressing a person in a patronising or infantilising way
Threats of harm or abandonment
Cyber bullying

There are many ways an AAC user might experience psychological or emotional abuse. Often, this is an unintended consequence of being in a situation where others have not considered your needs.

Removing your communication resources or not providing them for you to use is abuse because you have had your voice removed. This, in turn, can prevent you from expressing your wishes or having an opinion. In the Mental Capacity section, there was a reference to being able to communicate your decisions as a criterion for judging capacity. For this reason, you must always have access to your AAC resources.

AAC users frequently experience being addressed in a patronising or infantilising manner. Unfortunately, in wider society, there seems to be an association between disability and communication impairment with cognitive impairment. Whilst this should not happen it may be worth having some pre-programmed words or phrases that you can share to indicate you understand, people do not need to shout or use signs, they should talk to you age appropriately. You may also agree with people who directly support you on what they can say and how they can model good communication strategies to indicate to others that they are not acting appropriately.

Neglect and acts of omission

Failure to provide or allow access to food, shelter, clothing, heating, stimulation and activity, personal or medical care
Providing care in a way that the person dislikes
Failure to administer medication as prescribed
Refusal of access to visitors
Not taking into account individuals’ cultural, religious or ethnic needs
Not taking into account the educational, social and recreational needs
Ignoring or isolating the person
Preventing the person from making their own decisions
Preventing access to glasses, hearing aids, dentures, and similar items.
Failure to ensure privacy and dignity

Types of neglect and acts of omission might also fall into the physical and emotional abuse categories. For an AAC user, this could be failure to provide you with access to your AAC resources, not listening to your wishes, or not providing you with a safe space when you wish to discuss something of a private nature.

Neglect and omission include not looking after your communication and other assistive technology resources, making sure they are clean, charged, well-maintained, and in the right place at the right time. This includes help with programming an AAC device or providing suitable vocabulary if needed.

Any of these actions can be down to many factors: poor training, laziness, or just not caring. If it is a persistent issue, question whether it is a training issue or requires more formal action.

Financial or material abuse includes:

Theft of money or possessions
Fraud, scamming
Preventing a person from accessing their own money, benefits or assets
Employees taking a loan from a person using the service
Undue pressure, duress, threat or undue influence put on the person in connection with loans, wills, property, inheritance or financial transactions
Arranging less care than is needed to save money to maximise inheritance
Denying assistance to manage/monitor financial affairs
Denying assistance to access benefits
Misuse of personal allowance in a care home
Misuse of benefits or direct payments in a family home
Someone moving into a person’s home and living rent-free without agreement or under duress
False representation, using another person’s bank account, cards or documents
Exploitation of a person’s money or assets, e.g. unauthorised use of a car
Misuse of a power of attorney, deputy, appointee-ship or other legal authority

There are many different ways a disabled person may be subject to financial or material abuse. A key one for AAC users is a staff member ‘borrowing’ their communication device to use it for their own purposes, e.g. a teacher to make the class laugh, or a staff member wanting to use it to surf the net.

Discriminatory abuse includes:

Unequal treatment based on age, disability, gender reassignment, marriage and civil partnership, pregnancy and maternity, race, religion and belief, sex or sexual orientation (known as ‘protected characteristics’ under the Equality Act 2010)
Verbal abuse, derogatory remarks or inappropriate use of language related to a protected characteristic
Denying access to communication aids, not allowing access to an interpreter, signer or lip-reader
Harassment or deliberate exclusion on the grounds of a protected characteristic
Denying basic rights to healthcare, education, employment and criminal justice relating to a protected characteristic
Substandard service provision relating to a protected characteristic

All disabled people, including AAC users, have protected characteristics under the Equality Act (2010). This means you cannot be discriminated against because of your disability, or that you use alternative ways to communicate. You are entitled to be treated the same as the rest of society, with respect and equal opportunity. The UK 2010 Equality Act and your rights are based on the UNCRPD (2006) – see the Mental Capacity Act section above.

Just because you happen to use AAC does not mean you should be denied the same healthcare, education, employment or legislative rights as the rest of the population. Sometimes ‘things’ happen because people are not aware of what they should do and how they should act and do things with good but misguided intent. Other times, there may be intent behind actions. All education, health and social care professionals should have been trained in treating all disabled people equally, including AAC users, although unfortunately, this is not always the case.

There are other types of abuse and neglect, but these are not directly related to AAC use.

If something happens to you and you do not feel this is right, then you must tell someone you trust what has happened and how it made you feel. Sharing this information is called disclosure.

AAC and disclosure

Having a communication impairment and using AAC can make sharing your concerns more challenging than for other people. Everyone can find it difficult to communicate when they are stressed, ill, feeling guilty or afraid, in these circumstances it can be hard for anyone to find the words they want to say. Using AAC can make this even harder if physical symptoms make your body spasm, go floppy, you find it difficult to focus or don’t have available the vocabulary you need to tell someone you need help.

To disclose, you need:

Access to suitable vocabulary.
Knowledge that you will be taken seriously.
Knowledge that you will be heard and action taken.

There are 3 steps family members, support staff, and professionals can take to help you.

Empower you through you:

Knowing your rights.
Knowing how to raise an alarm.
Feeling able to speak out.
Knowing you will be listened to.
Knowing that action will be taken.

They prioritise you in all situations, e.g. in a meeting professionals should

Let you set the agenda order – if you have something you need to say, you may not want to wait until the end of the meeting, especially if the person you want to talk to then rushes off.
Always ask if there is anything else you want to add at the end of the meeting.
Allow sufficient time for the meeting.

They always pause and be patient

They should ask you their question.
Know that using a communication aid takes longer, so provide you with processing time to consider your answer and then allow you to use your device.
Know how to be patient and attentively wait for an answer to any question. They should pay attention to you, sit quietly without fiddling or talking to others.
Do not assume that looking around or being deep in thought means you have no response.
Allow for breaks, time out, or reschedule a discussion if needed.

Ultimately, your rights as an AAC user matter.

References:

Burkhart, L. (2011). What is AAC? [Online]. Toronto International Society for Augmentative and Alternative Communication. Available at: https://isaac-online.org/english/about-aac/ [Accessed 29 May 2024].

Communication Matters (2026). About AAC systems. https://www.communicationmatters.org.uk/about-aac-systems/#elementor-toc__heading-anchor-3 [Accessed 10 March 2026]

Legislation.Gov.UK (2005) Mental Capacity Act 2005 https://www.legislation.gov.uk/ukpga/2005/9/contents [Accessed 10 March 2026]

Department of Health and Social Care (2026) Guidance: UK Supreme Court 2026 judgement on what constitutes a deprivation of liberty https://www.gov.uk/government/publications/changes-to-the-definition-of-deprivation-of-liberty/uk-supreme-court-2026-judgment-on-what-constitutes-a-deprivation-of-liberty [Accessed 23 June, 2026]

Legislation.Gov.UK (2019) Mental Capacity Act 2019 Amendment Act https://www.legislation.gov.uk/ukpga/2019/18 [Accessed 10 March 2026]

Mencap (2018) Mental Capacity Act Easy Read Guide. https://www.mencap.org.uk/sites/default/files/2018-02/Mental%20Capacity%20Act%20-%20Easy%20Read.pdf [Accessed 10 March 2026]

Moulam. B. (2027) The Ultimate Lived Experience Guide to AAC: How to live audAACiously. London, UK: Jessica Kingsley Publishing.

Murray. J. et al (2024) AAC clinical guidance. RCSLT. www.rcslt.org/speech-and-language-therapy/clinical-information/mental-health-adults [Accessed 10 March 2026]

NHS (2026) Mental Capacity Act 2005, https://www.nhs.uk/social-care-and-support/making-decisions-for-someone-else/mental-capacity-act/#:~:text=It%20applies%20to%20people%20aged,home%20or%20have%20major%20surgery. [Accessed 10 March 2026]

Robinson, H. (2026) Working with AAC: A Guide for Supporting Augmentative and Alternative Communication Users. Abingdon, UK: Routledge.

Social Care Institute of Excellence (2023)

Social Care Institute of Excellence (2026) Mental Capacity Act reform stalled: urgent action needed as system unravels https://www.scie.org.uk/news/detail/mental-capacity-act-reform-stalled-urgent-action-needed-as-system-unravels/ [Accessed 10 March 2026]

Young, C. (2018). Complex Disability Equipment – Communication Aids (Specialised AAC services). Redditch: NHS England.

Please note: The year of my book is not a typo; it will be published in November 2026, and in the publishing world, this means it becomes a 2027 publication!