AAC users are the most important part of any AAC team, yet we are too often left out of team decisions. When at all possible, the AAC user must have the final decision-making authority in the team. Even if we are not able to make the final decision, our thoughts, feelings, and input must be considered. “Nothing about us without us” cannot be an empty statement; AAC teams must work to include and center AAC users in every decision.
It is important to include AAC users in team meetings about them. This means all AAC users, not just those who are “old enough” or “advanced enough” to participate. Even if an AAC user is not old enough or experienced enough with their device to speak much at the meeting, including them shows them that they are a core part of the team. Including the AAC user teaches them that their perspective and thoughts matter.
AAC users have a right to be included in the decision-making process for decisions about us. Too often, we are left out of the process because people assume we can’t understand or have nothing to say.
Include AAC users in team meetings
Think about inclusion from a lifetime perspective. Children grow up to be adults. Adults generally have more control over their lives and services than children do. AAC users don’t stay children forever. “Someone else will always make the decisions for them” is not a realistic or respectful answer to the question, “How do we ensure AAC users develop the ability to make decisions about their own communication and services?” Even if an AAC user can’t communicate their decisions in a way people can understand now, they may be able to in the future. Including AAC users in team meetings, even when they are young children, can help foster the ability to make choices and the ability to communicate those choices.
Additionally, conflict in teams often arises from situations where team members are not able to agree on what is best for the AAC user in question. Having that AAC user present to share their own perspective of their needs and preferences can give meetings much more direction and ensures that decisions are made based on what truly works best for their needs.
However, throwing someone into a team meeting without enough preparation–on their end or the rest of the team’s–probably won’t have the best results and won’t give them a real opportunity to contribute. Learning to navigate these kinds of meetings and advocate for yourself in front of professionals is a skill that needs lots of practice and support. It doesn’t develop overnight.
Talk to the AAC user about what these meetings will involve. Go over information like:
- Why is the meeting happening?
- Who will be there?
- What will the meeting be about?
- Why is it important for them to attend?
Just like the idea of a formal team meeting can feel stressful for the professionals and family members in attendance, the same applies for the AAC user. Especially if this is the first time they are being invited, they may feel apprehensive. There are strategies that you can use to help them know what to expect. For example, social narratives, stories, mini practice meetings, and so on, may help them feel more comfortable with the idea. But in the end, it is their choice whether to attend. It’s never something that should be forced on them.
Think through the potential barriers that might interfere with their ability to participate in the meeting. The AAC user may have less experience with these kinds of meetings than the rest of the team does. They likely will need more time to communicate than the others at the meeting. They may have trouble following along with the conversation, especially if there is a lot of unfamiliar technical language and acronyms being used. All of these can prevent them from participating fully.
Once you’ve identified potential barriers, come up with some strategies that could reduce these barriers. For example, maybe you decide that for each question, everyone goes around the table and takes a turn answering rather than everyone jumping in at once. Maybe you help the AAC user compose some messages in advance that they can share at the meeting. Maybe you assign one team member the job of listening for any potentially unfamiliar or confusing terms and jumping in to explain what those terms mean so that everyone can follow along. These kinds of strategies can benefit everyone, but most importantly, allow the AAC user to share their voice.
It is also important to seek AAC user input outside of formal meetings. AAC users, to the maximum extent possible, should have control over their own devices. If the team is making a change to an AAC user’s device, the AAC user should be consulted for their thoughts on the change.
Take, for example, device customization. If you are customizing an AAC user’s device, you should ask for their input whenever possible. Let’s say you’re adding words to an AAC user’s device to talk about different toys and games. You could show them different toys and games (or pictures of different toys or games) and ask them to choose which ones they like. You could also watch the AAC user while they play and see which toys and games they gravitate to. You can also engage other team members, like parents or teachers, to do this, but it’s important to try and engage the AAC user directly.
Center the AAC user
No matter how someone shares their thoughts, whether it’s through words or through actions, during a formal team meeting or outside that context, their perspectives matter. Keeping the AAC user’s perspective at the center of team meetings and decisions gives the team direction. Perhaps most importantly, involving the AAC user in team collaboration shows them that their voice is valued and builds their self-advocacy skills, skills that will benefit them for the rest of their life.