DSPs Using and Supporting Technology Use
CommunicationFIRST: Speaking up for Access to Augmentative and Alternative Communication
Author
Bob Williams is the co-founder and Policy Director of CommunicationFIRST .
Bob Williams, author
CommunicationFIRST is the nation’s only organization led by and focused on advancing the rights and interests of the estimated 5 million children, working-age persons, and older adults who must rely on communication tools and support to be heard and understood. These tools, strategies, and support are called augmentative and alternative communication (AAC).
See Us. Hear Us. - Bob Williams (English): https://www.youtube.com/embed/jFgx2ywRrk8?feature=oembed
CommunicationFIRST’s most recent See Us, Here Us film tells Williams’ story. Born with significant disabilities in 1957, he escaped the most insidious forms of discrimination many like him endured — institutionalization, being barred from school, and worse. From a young age, Williams has relied on multiple ways to communicate besides spoken language: gesturing, pointing, typing, and speaking words that others might comprehend. For 30 years, he has used a speech-generating device throughout his life and career.
“Almost all of us make simultaneous use of an array of expressive means of communication every day,” he notes. “People who need AAC are no different.” Often, individuals are denied access to necessary communication tools and/or the personal support they need to communicate. High-tech speech-generating devices are rarely sufficient on their own to meet the effective communication needs of an individual. According to Williams, direct support professionals, family members, and others must “play powerful frontline roles in enabling individuals who need AAC to effectively communicate and live life fully.”
“Speech-generating devices and similar technology are often necessary. But technology does not communicate. People do. Direct support professionals (DSPs) create the bridge, making this possible.”
“Speech-generating devices and similar technology are often necessary. But technology does not communicate. People do. Direct support professionals (DSPs) create the bridge, making this possible. All too often, however, this vital fact continues to be overlooked by providers, service systems, and Medicaid,” Williams adds.
Disparities in Access to AAC
According to 2018-2019 National Core Indicators - Intellectual and Developmental Disabilities (NCI-IDD) nationwide survey results, about one in five respondents reported using some method other than their speech to express themselves. Of this group who use some other method than their speech to express themselves, 75% were said to use gestures and body language as their primary means of expression. Only 1% were said to have a communication aid. An overwhelming 62% were labeled to have “severe” or “profound” intellectual disabilities. About 70% had mobility disabilities. Disproportionately, about half spent their days in segregated settings. Such individuals were likely to have fewer friends and make fewer choices. These data demand a deeper dive into why and how we can change the status quo. Moreover, NCI-IDD respondents who are Black, Indigenous, and People of Color have been more likely than White respondents to need AAC to express themselves.
Change is desperately needed…
Change is needed for racially and linguistically diverse individuals and others who require AAC and are denied it.
“There is an increasing and troubling body of research documenting widespread disparities shared by many people who need communication tools and support to be understood,” Williams said. “This is a problem for all of us that never gets talked about, much less addressed. It should be a starting point for larger efforts that empower everyone to communicate with each other.”
“Technology can help end the exclusion and isolation that silence imposes. But there is no substitute for people who listen and make a great effort to understand a person who most others ignore. Listening and understanding is not easy; it takes hard work, time, and empathy.”
References
Hiersteiner, D., Engler, J., Bershadsky, J., Bradley, V., Fay, M.L. (2014). What do NCI data reveal about individuals with intellectual and developmental disabilities who communicate nonverbally? 
National Core Indicators-Intellectual and Developmental Disabilities. (2020). National report 2018-19 demographics, table 21.
National Core Indicators- Intellectual and Developmental Disabilities. (2018-19). NCI-IDD In-person Survey. Human Services Research Institute and National Association of State Directors of Developmental Disability Services. [Secondary analysis completed by HSRI staff- available upon request]. Deidentified NCI-IDD data are available to researchers and the public for secondary analysis through data request process.