Augmentative and Alternative Communication (AAC) Peer Support Project | OHSU

Augmentative and Alternative Communication (AAC) Peer Support Project | OHSU
University Center for Excellence in Developmental Disabilities
University Center for Excellence in Developmental Disabilities
Members of the AAC Peer Support Project Steering Committee and Consortium met at the Assistive Technology Industry Association (ATIA) event on January 30, 2025, to present our work on AAC peer support models. Pictured from left to right: Kirk Behnke, Tracy Rackensperger, Yonit Hagoel-Karnieli, Jill Tullman, Lateef McLeod, Amy Goldman.
A screenshot from the February 2025 AAC User Meeting on Zoom. Pictured from left to right: Patrick Regan, Tracy Rackensperger, Jordyn Zimmerman, Michale Fondacaro, Alyssa Zisk, Jan Staehely, Kevin Williams, Lateef McLeod, Grant Blasko, Mateo Moreno.
Who we are
The AAC Peer Support Project formed a Consortium of AAC users, researchers, providers, and representatives from disability and self-advocacy organizations located across the U.S. Our goal was to develop recommendations for a national plan about peer supports for people who need or use AAC.
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"Who was involved?"
A Message from the Project Director:
Welcome to the webpage for the Augmentative and Alternative Communication (AAC) Peer Support Project.
This group worked together from March 2024-March 2025 to develop recommendations for a national plan for enhancing peer supports for people who need or use AAC. I often say that this project is magical within the field of AAC.
We invite you to explore our webpage and examine our findings and recommendations on peer supports and activities to support everyone who needs or uses AAC.
~Dr. Melanie Fried-Oken
When you finish reading about our work, we would appreciate your feedback so we can improve this webpage. Please take a short
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Melanie Fried-Oken, Ph.D., CCC-SLP, Professor Emeritus of Neurology, Pediatrics, Biomedical Engineering and Otolaryngology at OHSU
Partners:
CommunicationFIRST
Administration for Community Living (ACL)
(funder)
Association of University Centers on Disabilities (AUCD)
(contractual partner)
Findings and recommendations of the AAC Peer Support Project
Explore the final written report that describes the findings and recommendations for a national plan about peer supports for people who need or use AAC:
Final Written Report
(9.29 MB)
Executive Summary
(2.93 MB)
Plain Language Summary
(2.27 MB)
If you need help accessing these reports, please
email us for assistance
What was the goal of the AAC Peer Support Project?
Our goal was to advance the use of peer support models for people who use or need Augmentative and Alternative Communication (AAC) through the creation of a nationwide, comprehensive, consensus-based approach. We sought to answer:
What peer supports exist for AAC users now?
What peer support models exist outside the field of AAC that may be applicable to AAC?
Can we create a nationwide resource for developing peer support models for people who use or need AAC?
What did we do?
Conduct a survey of AAC users and peer supports
Identify and present different peer support models and discuss their outcomes
Conduct a systematic literature review
Identify barriers and opportunities, with attention to multiply marginalized communities
Examine models, approaches and activities for AAC advancement
Build consensus on initial findings and recommendations
Draft a final report on our findings and recommendations for a national plan
Survey of AAC users
To AAC Users within the U.S., we asked:
What tools and techniques do you rely on for expression?
View a poster of the
tools and techniques results
View the
plain text version of the tools and techniques poster
What are your experiences with peer supports?
View a poster of the
experiences results
View the
plain text version of the experiences poster
View the
full written report
To national AAC community members, we requested:
Descriptions of peer support models that you have experience with, inside and outside the AAC field
View the
models results
Scoping review of publications and presentations about AAC peer supports
View the
scoping review
Word cloud results from a survey asking: "What words come to mind when you think of peer support?"
A graphical display of word frequency that emphasizes words that appeared more times in the survey. Some of the words that were submitted most frequently include trust, respect, friendship, empowerment, community, honoring everyone, no judgment, shared experience, having each other's backs, reciprocal, camaraderie, and learning from each other.
What is AAC?
AAC stands for Augmentative and Alternative Communication. This means all the ways people communicate without talking. AAC is ways people who can't speak all the time or can't speak at all can communicate.
AAC users discuss AAC peer support
AAC Peer Support Consortium Presentation Bob Williams - August 28, 2024
AAC Peer Support Consortium Panel Discussion: Barriers to Organic AAC Peer Support - January 8, 2025
AAC Peer Support Project: Overcoming Barrers to AAC Peer Support - February 12, 2025
Watch more videos on the AAC Peer Support Project YouTube Channel:
AAC peer support is a community where AAC users come together in a safe space to share their positive and negative experiences. It is built on trust and respect, fostering open and honest communication, and involves sharing ideas, activities, and frustrations to manage life’s challenges and validate all forms of communication. Key elements are:
Reciprocity:
Mutual exchange of support and understanding.
Connection:
Building friendships and a sense of belonging.
Empowerment:
Encouraging independence and interdependence.
USSAAC Blog: AAC Peer Support Models
Core values of peer support
The core values of peer support are the foundation of this project. Peer support:
can be offered, received, and is reciprocal
is about being seen, heard, and valued
can be one-time, episodic, or ongoing
can be brief or comprehensive, depending on the availability and expectations of the persons needing the support and the skills and responsibilities of the persons offering support
disrupts oppression
recognizes and sustains community as comprised of acts of belonging and sharing, not mere coordinates on a map
spurs pride and a sense of resilience in ourselves, our community, spelling it out, and taking action
can include membership to many different and diverse peer groups for each person
This graphic shows peer support components modeled in the shape of a tree. The trunk is AAC peer support. The roots are the core values of peer support. The branches are the different peer support models, approaches, activities, and projects. The leaves are the different experiences that happen in peer support. The seeds (or fruit) are the outcomes of peer support, which are planted and spread more peer support. The forest with many other trees is like our communities, which include all different kinds of support. The environment around the tree is like our society.
Other tools and resources that resulted from this work
How to prioritize AAC users in discussions during virtual meetings
The Consortium developed guidelines for virtual meetings between AAC users and people who can rely on speech. These guidelines prioritize AAC user perspectives in discussions and the consortium agreed this empowered people who use AAC. A member told us,
“I can honestly say that this consortium has been the most accessible meeting I have attended, and it is not even close."
We are pleased to share the guidelines for others to use or adapt for their meetings.
Download the
Consortium Discussion Guidelines
Sample assessment tool for evaluating AAC peer support activities
The Consortium recommends that the AAC community should define evaluation frameworks for AAC peer support activities. Rather than focusing on increased access to or use of AAC, evaluation efforts should prioritize subjective quality of life measures (i.e. sense of self, choice, autonomy, agency, privacy, trust, camaraderie, well-being). To support this, a sample self-assessment tool was developed to help individuals reflect on their personal goals and assess how well an AAC peer support activity aligns with their needs.
Download the
sample self assessment tool
(also available on page 33 of the
final written report
).
Who was involved?
The Steering Committee
The roles of the Steering Committee were:
To ensure that AAC users were integrally involved in the work this project is doing
To review the products and deliverables from each workgroup and the national plan
Members:
Tracy Rackensperger
Lateef McLeod
Jordyn Zimmerman
The AAC Peer Support Consortium
This project was led by a consortium made up of AAC users, researchers, providers, and representatives from disability and self-advocacy organizations located across the U.S.
Organizations represented in the AAC Peer Support Consortium
ALS of Michigan
Aphasia Community Center, Inc.
Ask Me, I'm an AAC User
Assistive Technology Act Programs, ACL
AssistiveWare
AT Lab, Community Vision
Autism Society of America
Autistic Self Advocacy Network
Beyond the Chair
Bridge School
Bridge School's Bridging Communities Through Alternative Communication (BCTAC)
Co-founder of Camp ALEC
CommunicationFIRST
Center on Youth Voice, Youth Choice
Disability Advocate
Disability Voices United
Georgetown Univ. National Center for Cultural Competence
IHDD Georgia UCEDD
ImpAACt Voices
Institute for Community Inclusion, Univ. of Massachusetts Boston
ISAAC
Jill Tullman & Associates
NASDDDS
National Alliance for Direct Support Professionals
National Aphasia Association
National Association of Councils on Developmental Disabilities
NCIL: National Centers for Independent Living
OHSU UCEDD
Oregon Family to Family Health Information Center
Portland State University Universal Design Lab
PRC-Saltillo ambassador and training program
RERC on AAC
SABE
San Francisco State University
Supported Decision-Making Initiatives, Center for Public Representation
TASH Communication Access Community of Practice
The Arc of Ohio
USSAAC
Waisman Center, University of Wisconsin UCEDD
Wyoming Institute for Disabilities and WY AT Resources (WATR)
Quotes from Consortium members
"I look forward to this meeting every week. I learn from my peers, especially those who use AAC. I never lose my excitement for the project when we are together. I hope we can keep this group going after the grant ends."
"I love how we all work together! I want our group to go on after the grant wraps up. We're just starting our work, and there is more to do."
"It feels like we have gotten a lot done, and also this is just the beginning of a movement across the U.S. and probably further to open doors for AAC users to get more than language supports."
"So proud to attend a meeting that was about the experiences and opinions of AAC users rather than talkies. Moved the power where it should be for the final product."
"So happy to move this agenda forward, taking back our power, we are fully AAC-tivated!"
"I always feel empowered to make big changes in society after I meet with this dynamic group!!"
"There are times when it feels like I lucked out and was in the right place at the right time. I feel like that with this consortium. I feel very honored and humbled to have had the experience to work with all of you."
Connect with us about this project
Work on this project spanned from March 2024-March 2025. If you would like to receive more information about the AAC Peer Support Project, email us at
ucedd@ohsu.edu
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