Not for the first time, and probably not the last either, I was recently asked about decision making.  The question was:

What is the best way for professionals to ask for, and include, your thoughts and opinions in their decision making?”

My personal thoughts led me to write this.  Whoever we are, whether we use AAC or not, we all want to feel we have a say in our own lives.  ‘Nothing about us without us’ as a concept means no decision or opinion, however big or small, that affects an AAC user as an individual, or collective, should be made without their input.  Originating in the disability world in relation to independent living it can be applied to all decision making. I first came across this phrase when working with the European Network for Independent Living (ENIL).

When any decision directly impacts an individual’s life, the final decision that informs others should rest with the AAC user, not a researcher, professional, or family member.  Professionals who may be making decisions that impact the lives of individuals or groups or about services available to them, should not assume they know what AAC users want.

In order for an AAC user to have an informed opinion on any topic, there must be robust processes in place to ensure they have the support, time, information and resources to make their own decision(s) and form opinions for themselves.

This can be achieved by:

Adopting the human rights model of disability:

Start by presuming competence; all AAC users can, with the right resources and support, share their thoughts and opinions.

Governments, organisations and individuals have a duty to remove barriers and provide the necessary support for full inclusion and equal participation of all citizens. This is the basis of the UNCRPD (2006), which was ratified by the UK Government in 2008 and acknowledges the imperative of AAC for individuals to share their thoughts, feelings and make their own decisions.  This right to be heard and have their views taken into account is implicit within UK legislation.

Providing Peer Support

Broaden the horizons of AAC users to help prepare for decision making and sharing their opinions in their own right.  Provide peer mentors and role models throughout education and adult life.

It is very easy to lead the direction of decision making if the AAC user does not have the knowledge of what options are available to them.  From the earliest opportunity, the UNCRPD states AAC users should be supported in school by others with lived experience as peer mentors and role models.  Teachers and staff must also be provided with training communication partners to work with AAC users; giving them the opportunity to learn and understand what options for their future lives are available to them.

Approaching decision making from a co-production perspective

Stay focused on ‘nothing about us without us’ and resolve to share power with AAC users.  Co-production starts with a shared vision; that AAC users should be involved in every step of the decision making process from co-creation of projects through to dissemination of results and findings.

Empowering others means sharing power at every stage of the fact-finding and decision making process. Initially this may feel scary for a professional. Whilst the ‘book’ may stop with a principal researcher or service provider, if a professional or other person leads a project or activity with no lived experience of using AAC, then it may not be reflective of what the AAC user might want or wish for themselves.  Even when a researcher or decision maker has lived experience of using AAC, it is important to remember that everyone is a unique individual, and viewpoints will vary.

The Our Futures Project (2025), a Communication Matters 2-year project, found that what AAC users want for themselves was often different from what others thought they needed or should have.  This included family members, support workers, professionals and suppliers.

 Co-production can be achieved through the following steps:

Allowing preparation time:

An AAC user needs:

  • More time to formulate their views and opinions than other people. This may be because it is a new or different situation for them, one they have not had to think about before.
  • Thinking time to do their own research, weigh up options, discuss with trusted advisors, formulate opinions, programme their device and be ready for a meeting. For transitional life events, preparation may be months or years, even for smaller decisions or activities; planning and preparation time may take longer.
  • No surprises! Always allow for a pre-meeting to set the scene, send key information in advance, including the questions you want answers to.

Respect

During any session, show respect for the AAC user by:

  • Remaining aware of any power dynamic at play between yourself, naturally speaking participants and AAC users. In part this may be created because of professional experience and roles, but often because of the ability of any speaking person to communicate spontaneously, explain in full and when needed elaborate a point.
  • Allowing an AAC user to use their own communication resources that they are familiar with.
  • Providing time for each interaction, including breaks when needed. If you cannot finish in the time set aside, return for a further session to complete the work to ensure you have the fullest picture.
  • Actively listening by not interrupting, observing body language, eye movement, signs and facial expression, leaning into the silence and valuing cognitive processing and physical output time. Then, not just about hearing the words but listening to the meaning of what is being said by the AAC user. Remember, all communication is multimodal; it is more than a paper or a powered resource.
  • Clarifying their intended views and opinions.
  • Agreeing jointly on your shared understanding of the point they have made and honouring this outside the meeting or activity in your work.

Using AAC users’ opinions in professional decision making

Endeavour to always hold the views and opinions of AAC users in your mind when making decisions that impact them.

Remain faithful to what was agreed in a meeting or activity on a specific topic or way of working.  If it does not fit with policy, your research ideas, or intended project outcomes, this must be acknowledged.  Making a decision that is different to the one shared by the AAC user may mean you lose credibility with them and potentially the wider AAC user community.

If you, as a professional, have conflicting views from different AAC users, then note this in your work.  Everyone is entitled to their own opinion, and these should be accounted for in decisions.

Every AAC user is different, just as every human is unique. 

Besides needing AAC to communicate, those asking the questions should take into account gender, race, ethnicity, cultural background and wider disability and sensory conditions.

Decision makers should remain unbiased

Whatever your role in a professional capacity, always avoid your own bias and aim to be impartial.  When AAC users share their lived experiences and views, these are more important than the opinions of others who do not use AAC.

This may cause some concern if you are conducting an activity or research where a funding body is looking for a particular result, or where existing policy is at odds with the views of an AAC user.  This might be addressed by:

  • Ensuring funding and decision-makers know that the involvement of AAC users in activities and projects and results will be reflective of their views.
  • Endeavouring to remove bias from the start of any project or activity by including AAC users in co-creation, then co-production of the project.
  • Ensuring any report and decision making authentically reflects what AAC users want. If you use quotes, reference the AAC user (anonymously or by name).
  • When there is an opportunity, always include an AAC user who has been involved throughout the project or activity in any dissemination events. It is so much more powerful to hear the voice of an AAC user than to quote them.