AAC Counts: The Urgent Need for Better Data About People with Speech-Related Disabilities
People in the United States who cannot rely alone on speech to be heard and understood are not counted in any systematic manner by federal or state governments. Failing to accurately track our characteristics, access to services and supports, and unmet needs makes it impossible for policymakers and advocates to appreciate and address the challenges, barriers, and intersectional discrimination we grapple with each day.
Not counting those who struggle most to have a voice renders an already insular class of people even more invisible and powerless.
Despite the government’s collection of data on people with the two other main types of communication disabilities—hearing and vision—there is shockingly little data about people with speech-related disabilities. The National Academies of Sciences has reported that data on individuals with significant communication disabilities are limited and based on disability prevalence rates, not population estimates, making it impossible to know anything about our demographics or living conditions.
We also know that due to health disparities, Black Americans and other people of color are more likely to experience stroke, ALS, Parkinson’s, and other conditions that may require them to use augmentative and alternative communication (AAC), and face added difficulties in obtaining it. It is difficult to design and implement effective policies for a population without information on their diversity, commonalities, and unmet needs. How effective are the billions of dollars devoted to programs purporting to serve us? Improving the life opportunities of people requiring AAC will remain nearly impossible if the data to guide these efforts are not collected, analyzed, and effectively used.
In January 2022, California-based Ability Central announced it was awarding the Disability Rights Education and Defense Fund (DREDF) and CommunicationFIRST a $75,000 grant for the one-year AAC Counts Project. Because Ability Central is a California-focused foundation, this project initially will focus on California data. We hope and expect that the resources and recommendations that are produced from the one-year project will lay the foundation for addressing this data inequity issue on a national level.
The AAC Counts Project will take place during 2022 and will:
- Catalogue existing prevalence and demographic data on Californians and others who require AAC (click here for a working draft summary as of May 2022 of previously compiled prevalence data);
- Analyze how existing data can be used and improved to better understand and meet their needs;
- Produce a high level demographic profile of this cohort; and
- Produce recommendations and options for improving the quality of such data so that it can help inform and enhance policies and programs affecting these individuals and their families.
The results and recommendations will be shared publicly in a variety of formats, including a webinar, at the conclusion of the project.
Save the date!
We will be releasing the results of this year-long project in a public webinar on February 23, 2023, from 11:30-1:00 Pacific US time / 2:30-4:00 Eastern US time. Check back soon for registration details!
We count the things we care about in society. We must begin to count people who cannot rely on speech alone to be heard and understood.
- Bob Williams, CommunicationFIRST Policy Director
- Tauna Szymanski, CommunicationFIRST Executive Director
- Mary Lou Breslin, DREDF Senior Policy Advisor
- Susan Henderson, DREDF Executive Director
- Sylvia Yee, DREDF Senior Staff Attorney
- Alyssa Hillary Zisk, PhD
- Steven Kaye, Professor at the Institute for Health & Aging and the Department of Social and Behavioral Sciences, University of California, San Francisco
Thought Leader Panel
The AAC Counts Project will be advised by a diverse group of Thought Leaders, including:
- Alixe Bonardi, MS (bio) (Human Services Research Institute, former director of National Core Indicators survey of people with I/DD)
- Yoosun Chung, PhD (bio) (George Mason University special education department, full-time AAC user; USSAAC Board of Directors)
- Melissa Crisp-Cooper (bio) (California-based, full-time AAC user with health policy background)
- Charles Ellis, PhD (bio) (University of Florida Department of Speech Language and Hearing Sciences; research focuses on acquired speech disabilities and minority health disparity issues)
- Tawara Goode, MA (bio) (Georgetown University, National Center for Cultural Competence)
- Clarissa Kripke, MD (bio) (University of California San Francisco, family member of adult full-time AAC user, medical doctor who works with young adults with I/DD)
- Saili Kulkarni, PhD (bio) (San Jose State University special education department)
- Charlie Lakin, PhD (former Director of the National Institute on Disability, Independent Living, and Rehabilitation Research and of the Research and Training Center on Community Living at Institute on Community Integration at the University of Minnesota)
- Gloria Soto, PhD (bio) (San Francisco State University professor of education focusing on AAC and multiculturalism)
- Hari Srinivasan (bio) (PhD student in neuroscience, Vanderbilt University, full-time AAC user)
- Bonnielin Swenor, MPH, PhD (bio) (Director of The Johns Hopkins Disability Health Research Center)
- Sahar Takshi, JD (bio) (Equity and Elder Rights Staff Attorney, Strategic Initiative to Advance Equity at Justice in Aging)