Early in 2026, I was shocked to learn of the events surrounding support for Lucinda Ritchie (BBC, 2026), who lives in Sussex. It was upsetting to read her story. Lucinda had been in hospital, and the NHS had decided that rather than allowing her to return to her own home, she would be placed in a nursing home an hour away from her family. This took place entirely against Lucinda’s wishes and emphasised the importance of planning for the future as an AAC user.

What made me take action?

Lucinda is someone I have met in passing, and in many ways, she is similar to me. She has studied at the postgraduate level, uses eye‑gaze to communicate, and has her own fully adapted home. The main difference between us is that I have 24/7 personal assistants, whereas Lucinda has apparently received 24/7 trained nursing support. Nevertheless, I could see that without access to AAC or essential communication support, it might be easy for a similar situation to happen to any AAC user.

What Lucinda experienced on so many levels is wrong. From the press reports, it seems she was receiving legal advice and had people fighting her corner, but where were the supposed safeguards so people like us can be heard, treated equally before the law, and have our views heard?

Changes to the law

Further to this, there has been an immediate change to the law (June 2026) with a Supreme Court ruling (DHSC, 2026) around the definition of Deprivation of Liberty (DoL). The new judgment relies on a multifactorial assessment, so it is much more complex than before. This relies on assessing the individual’s specific situation and taking into account the type, duration, effects, and manner of implementing restrictions on the person.

This means the views of an AAC user must be taken into account in decision‑making, especially to ensure they are ‘content’ with their situation; specifically, the ruling says that being compliant does not mean consent. An assessor must take into account whether the individual has difficulty expressing their wishes due to sedation, medication, fear of consequences, feeling pressured, or a belief that they do not want to be a burden on others. When assessing wishes and feelings, consideration should be given to what the person is communicating both verbally (if they are able) and through their actions and behaviour. For example:

  • do they appear happy or unhappy?
  • are they trying to leave, or are they distressed in any way?
  • are they able to express a view?

This is particularly concerning, as we know how hard it can be to make yourself understood when you are ill or stressed, or if you rely on the ‘goodwill’ of a care team for your day‑to‑day support.

This new legislation applies to anyone over 18 in a hospital or care home, and anyone over 18 and children living in the community where they have a Deputy authorised by the Court of Protection for Care.  So, in other words, the worst-case scenario is that as an adult AAC user, you might go to the hospital, and your life might change.

What might this mean for AAC users?

Add these two scenarios together, and I had some concerns and began to consider my own situation. As an example, under the new legislation, if a physically disabled person is unable to leave a setting independently due to illness, condition, or disability and cannot demonstrate a desire to leave, it will not be classed as deprivation of liberty. So in my own case, if I was in hospital I cannot get out of a bed on my own, into my powerchair without assistance; I struggle to make myself understood without AAC and a trained communication partner who can ready my body language, eye movements and facial expression; so without full access to the resources — 1‑1 assistance, charged powerchair and charged AAC mounted in a way I can access it — then potentially I risk falling into this category of being unable to demonstrate a desire to leave or an assumption I consent to an intervention.

Creating a Lasting Power of Attorney

As a family, we had completed Lasting Power of Attorney (LPOA) paperwork with my grandma a few years ago. It was done just in case it was needed, as she aged, she might no longer be able to make her own decisions. It turns out that now she has advancing dementia; this was a good call. I can see it has come in really useful for my mum, helping her coordinate her support and liaise with outside agencies. Tough call — I realised this was something that might be useful for me in the future. It’s quite a hard situation to recognise, even more so to think about.

Taking your own legal advice

I took some legal advice about the process. LPOA needs to be verified by someone who is not an attorney (the attorney is a person you nominate in the LPOA and who acts in your interests – see below). This can be someone who has known you for at least two years, or someone with relevant professional skills, such as your GP, a healthcare professional, or a solicitor. The solicitor recommended that I retook a Mental Capacity Assessment — not that anyone who knows me doubts my cognitive ability, but to ensure that if the LPOA is ever needed, there was evidence I was of sound mind, knew my own wishes, and was not influenced by anyone during the process of drawing up the documentation.

An LPOA is completed at a time when the individual is capable of making decisions and is then held on file by the Office of the Public Guardian until it is activated by those you have previously nominated to act for you, in my case, initially my parents, but we have already identified other people for the future as I know they won’t be around forever.

This isn’t an easy task

The point of this blog is that facing this reality is a really hard topic to deal with, and I wanted to raise awareness with other AAC users and their families. I’ve discovered it is a huge task thinking about what you want, or might not want, later in life or if things change in your life. For this reason, I’ve decided to record the process (not the personal details) but the steps we are going through in the hope it helps others.

Planning for my own future needs

First, I needed to decide what I did and didn’t want for my future. I already have some documents outlining the support I need on a day‑to‑day basis, and since COVID, I have kept a detailed document covering my medical needs. I also have a chapter in my upcoming book, ‘How to Live AudAACiously’, about using AAC in health and care settings.

Based on these, I set about adapting what I had and soon found myself adding all sorts of personal information, e.g. if I am in hospital I must always have access to my AAC devices, which must be charged overnight.

Some of the communication requests are based on ‘what if this happens’ scenarios. For example:

  • Having the input from the specialist AAC team at the Regional Assessment Centre to ensure mounting is provided to use eye‑gaze in a hospital bed.
  • Always having a trained communication partner available (family or team) and not being expected by consultants, hospital managers or others to make ‘life‑changing’ decisions without my family or a trained communication partner of my choice present.
  • For a prolonged hospital stay, the ward team and other key professionals should receive communication‑partner training.
  • There were plenty more!

But more than this, I thought about what steps I might want to take regarding my long-term care, deprivation of liberty (DoL), my desire to recover in my own home rather than be placed in a care/nursing home, what I feel about Do Not Resuscitate notices, and more.

Who is an attorney?

Then I have had to think about who my attorneys would be. These are the people who will carry out my wishes, either temporarily or on an ongoing basis. You can give a temporary LPOA if you are having surgery or have an illness from which you will recover. But in the case of a more catastrophic event of a long‑lasting nature, who would be the people I would trust to look after my best interests? It is also possible to change all this in the future if your life circumstances change, but I’m guessing there will be more cost for more capacity assessments.

What are your rights?

Meanwhile, I’ve also created a document using my policy hat. This is ‘Your rights as an AAC user: A resource for AAC users, their families and support networks – The Mental Capacity Act, Deprivation of Liberty and Safeguarding’. This is quite a chunky guide written from an AAC user’s perspective, pulling the things I think are important into one place.

These are my personal views. I would recommend that if you have concerns, you take professional advice about your own circumstances.