by Alicia Alverson, MS, CCC-SLP, ATP (speech/language pathologist); NWACS board member

reading time: 7 minutes

Wow! 2022 is wrapping up. We were busy at NWACS this year covering the Communication Bill of Rights. This sparked a lot of great conversation. And provided new information for our blog. We dove into the conversations that are materializing around equity and access to communication. We renewed our torch of advocacy at NWACS. In this post, you will find a review of the Communication Bill of Rights and helpful tips related to each right. If you’d like to review the history, see our intro post.

How can you use the Communication Bill of Rights?

• to help AAC users with self-advocacy

• to guide SLPs, OTs, teachers, and other professionals in creating environments that foster AAC users’ rights

• for families to understand and advocate for the rights of their AAC users

• to display in schools, medical settings, and more

• to ensure we are treating individuals with disabilities and differences equitably

There are a variety of Communication Bill of Rights posters available:

• National Joint Committee for the Communication Needs of Persons with Severe Disabilities (NJC) – this is the poster we have been referencing this year.

• A symbolized and adapted version by Kate Ahern

• A symbolized and adapted version by Katie Tierney

• An adapted version by Oxfordshire Total Communication

• An English and Spanish poster on Teachers Pay Teachers

The Communication Bill of Rights is a reminder that at the center of every conversation involving an AAC user, should be the AAC user. Their communication has power. Their communication is valid. Their communication is important. Their communication is valuable. Their communication matters. Their communication is their communication.

To summarize, according to the NJC, all people with a disability have the basic right to communication to relay their basic needs. In addition, each right guides us to foster environments that allow full communication participation, in all daily interactions and interventions, by people with disabilities (Brady, A., Bruce, S., Goldman, A., et al., 2016). Some common themes that appeared among the rights were:

• Opportunities for building and respecting autonomy are realized when respecting these Rights.

• It is critical to ensure access to a variety of relevant vocabulary for a variety of communication interactions in AAC users’ systems.

• Honoring multiple means of communication is important and needed.

• Communication partner coaching is an essential part of ensuring AAC users’ communication rights are respected.

• Making sure AAC users are aware of their Communication Rights.

• Teach, teach, teach, teach, teach!

• Give time. AAC users need time and patience from their communication partners so they can relay their intended message. We are used to a conversational pace that moves quickly. This can be prohibitive to an AAC user to say the things they want to say.

Let’s summarize a few key points from each Right.

• Provide and foster opportunities to build and engage in social relationships.

• Teach vocabulary use for a variety of social settings.

• Always acknowledge requests. Honor when possible. Explain why when not possible.

• This means not hiding vocabulary that a user wants but can't have. Instead have conversations and use the teaching opportunity to help the user understand why.

• Important for self-advocacy.

• Refusal isn’t just saying “no”. It could be communication like, “not right now”, “I’m not ready”, or “this isn’t working for me.”

• There are imperative safety reasons to be sure AAC users have the skills and tools to refuse. It allows them to say “no”, “stop”, or “I don’t like that” in uncomfortable, dangerous, harmful, or abusive situations.

• Helps to promote and build emotional competence.

• Teach vocabulary around emotions.

• Ensure access to relevant vocabulary describing feelings.

• Dynamic assessment can help to determine the number of options to offer, the presentation method, and the selection method when presenting choices.

• When offering choices in a limited field, it is crucial to remember that there is a possibility the AAC user’s choice is not available. Offering a “something different” option can be powerful.

• The power of choice helps AAC users to develop self-determination.

• Making comments and voicing thoughts allows AAC users to participate in meaningful conversations. To have meaningful social interactions.

• Teaching and fostering commenting allows AAC users to interact with their world. Form opinions about their world. Fostering their self-identity.

• Create opportunities for AAC users to comment by creating time, space, and an expectation of thought-sharing and participation (McLemore, L., 2022).

• Show interest in AAC users’ thoughts. Help the AAC user find ways to assert themselves in conversation.

• This teaches and fosters information transfer. Which is needed for daily social interactions to deliver messages, share news, report problems, and direct care.

• Create opportunities to teach AAC users how to ask questions. And foster situations where they can ask questions.

• Inform AAC users about people in their lives. Have conversations about losses, temporary and permanent. This can provide opportunities for the AAC user to process what is happening and communicate about it.

• Inform AAC users about the events in their life - whether routine, special, stressful, or general changes to their schedule. When AAC users have time to process what is coming ahead in their life, they may have less stress surrounding new changes.

• Visual supports, like visual schedules and calendars, can be a supportive tool to use to talk about events.

• Communication partner instruction and coaching is an intervention.

• Best practice interventions can

  • increase conversational turns

  • independence

  • message length

  • use of a variety of words

  • frequency of communication for AAC users

• Ensure access to AAC any time communication needs cannot be met alone with spoken language – whether for part-time or full-time use.

• It can take a lot of energy to communicate using an AAC system. When users' communication goes unacknowledged and/or not responded to, this can be frustrating for the person trying to communicate.

• Acknowledge and respond to communication to combat learned helplessness.

• If you didn’t understand all or part of a message, communicate what you did understand. Work with the AAC user to repair the communication breakdown using their preferred communication methods.

• When you cannot grant an AAC user’s request, explain why. Give alternatives or a time frame for when it’s possible.

• Have a plan for charging, backing up, and updating high-tech devices.

• Multi-modal communication supports are crucial to maintaining access to AAC in all environments. Think rain, pool, power outages, bed, medical appointments, hospital, etc.

• Paper-based backup systems can be good tools for access when high-tech AAC use is not possible.

• Ensure access to communication at all times.

• Environmental supports may be helpful in understanding activities, tasks, and conversations. Think visual schedules, calendars, task sequences, social stories.

• Be an active listener. Clarify and confirm messages when you may not fully understand them.

• Model to teach language and communication. Model how to be an effective communication partner. Coach others on how to be an effective communication partner.

• AAC users need access to the words they want and need to say – even when they are “taboo”, “uncomfortable”, or “too adult.”

• It is developmentally appropriate to learn “bad” words.

• Disabled people are at a higher risk of being victims of violent crimes, assault, and abuse. Such crimes are less likely to be reported. Disabled people need relevant words to report anything that has happened to them.

• Disabled people have the right to be active conversation partners at medical appointments, care conferences, IEP meetings, and any conversation around them.

• Make time and space for AAC users to be active parts of conversations. This promotes their self-identity, autonomy, and agency.

• If you are using a disabled person’s or AAC user’s name or 3rd-person pronouns (i.e., he, she, they) in front of them, while talking about them to another person, you are probably speaking about instead of with an AAC user.

• AAC users may speak a language different than or in addition to English. AAC systems need to account for this. Manufacturers are getting better about providing a greater variety of culturally and linguistically diverse options. But there are still needed improvements.

• AAC needs to be culturally appropriate. Not just translated into a different language.

• AAC services need to be delivered in linguistically and culturally respectful ways. Culture also includes disabled culture.

Thank you everyone for joining us this year to discuss the Communication Bill of Rights. We hope these conversations provided better representation for AAC users and disabled people. We hope service providers found helpful takeaways in each article to support the Communication Bill of Rights for all disabled people. We feel renewed in our spirit of advocacy and understanding and hope you do too.

You can find all of our Communication Bill of Rights blogs here.