The following is a summary of the findings from my Masters research at Laurier. Next term will be my last term, and I will be preparing the information to submit the research for publication. I welcome your feedback and I'm happy to talk about this at length! ;)

I am pleased to announce that I just received ethics approval for my research at Laurier. I will be examining the barriers to full participation and learning for students with complex communication needs (CCN) in Ontario public schools from the point of view of their parents. For more information and to express your interest in participating, please see the description of research.

Please note, the newly-released style guide by CommunicationFIRST recommends moving away from the use of the CCN label, and instead use the phrase "people who cannot rely on speech alone to be heard and understood." I welcome this conversation and I highly recommend reading "The Words We Use." My decision to use the CCN label in the research proposal was based on the accepted terminology in past published literature, and was submitted for ethics review before the publication of "The Words We Use." I hope to weave this topic into my written report when finished the research. I welcome your feedback!​

​As described in last month’s newsletter, an attitude barrier refers to a mindset or behaviour of anyone who works directly or indirectly with a student. In the context of the Participation Model, this is specific to students who use augmentative or alternative communication (AAC) systems due to communication disabilities. I am writing about this barrier first because it is the rate-limiting step (to use a term from my chemistry-teaching days!). If we cannot get past the attitude barriers, our work on the other barriers will be pointless.
A common myth about students with complex communication needs (CCN) is that they cannot understand or cannot hear what you say. People commonly speak down to them, speak too loudly or talk baby talk. Even more commonly, people speak to their support workers about them in front of them. Students with CCN often have multiple disabilities caused by some kind of neurological condition. They are distinct from the Deaf community in that they can hear. And they encompass the full range of intellectual abilities. In the case of our daughter who has Rett syndrome, she can understand everything you say to her. However, these students are often labelled with intellectual disabilities due to the system’s inability to provide appropriate accommodations for psychological assessments.
Let me give you an example. When our daughter was four years old, she was assessed for her cognitive functioning. There was no eye-tracking technology then. She could not speak and she could not point. The psychologist observed her and had a lot of questions for us as parents. One question was, “Can she turn the door knob to open a door?” Due to her movement disabilities, she could not. Yet, this was documented as a cognitive disability, which meant she did not know how to open the door. I protested that she probably did know how, but was not physically able. But that was not how the testing worked. We had no proof that she knew how. The burden of proof was on us.
Regardless of perceived or actual cognitive function, all students can and should be at school to learn. Students who cannot speak with their mouths have historically been among the most isolated and underestimated of all students, with limited access to participation and learning in schools. My literature reviews have revealed a wealth of evidence about how to teach and include students with CCN in all aspects of school life. To participate in school and to learn academics, students must have a way to communicate with each other and with their teachers and support staff. Yet, there is limited evidence of successful AAC implementation in schools. In the United States, the National Joint Committee for the Communication Needs of People with Severe Disabilities (NJC) reviews literature and maintains documents “to guide practitioners and family members toward implementing current evidence-based practices” (Brady et al., 2016, p. 121). Arguably, its most powerful document is the Communication Bill of Rights. It lists 15 fundamental rights for people with CCN (p. 123). Yet, there is a disconnect between these rights and the experiences of people with CCN. 

​There is an excellent article from 2006 called “Who May Be Literate?” by Kliewer, Biklen, and Kasa-Hendrickson. It examines the “denial of literate citizenship for people with perceived intellectual disabilities” (p. 163). They demonstrate a long history of low expectations for people with complex disabilities. They also provide a really interesting discussion about the burden of proof about “who may be literate” and argue that a “seismic shift [is needed] in the moral fabric of how people with disabilities are understood” (p. 186). The entire paper is an explanation of attitude barriers, but the notion of disability stasis especially resonates with me. It describes the fixed mindsets which still prevail in education systems today.

​Our family has the privilege of living in a country with free education and healthcare. We live in a time when the technology has been invented for our daughter to use her eyes to talk. There are documented best practices to teach her to read and write and communicate. The pathway to expressing her thoughts is literacy. She can type letters on a keyboard with her eye gaze. The letters spell words and the computer “speaks” the words out loud. Throughout her school years, more than one professional wondered what would be the point of teaching her literacy. As a parent, I had to explain why she had a right to learn literacy in school!
We must promote growth mindsets. I work for a day when students with CCN will attend schools where all educators understand the point of teaching literacy* to all students. When they think of the Right to Read, they will not overlook the learning potential of students with complex disabilities. Let’s take the burden of proof off the shoulders of our most vulnerable students. Let’s get this seismic shift started!

References
Brady, N. C., Bruce, S., Goldman, A., Erickson, K., Mineo, B., Ogletree, B. T., Paul, D., Romski, M. A., Sevcik, R., Siegel, E., Schoonover, J., Snell, M., Sylvester, L., & Wilkinson, K. (2016). Communication services and supports for individuals with severe disabilities: Guidance for assessment and intervention. American Journal on Intellectual and Developmental Disabilities. 121(2), 121-138. https://doi.org/10.1352/1944-7558-121.2.121
Kliewer, C., Biklen, D., & Kasa-Hendrickson, C. (2006). Who may be literate? Disability and resistance to the cultural denial of competence. American Educational Research Journal. 43(2), 163-192. https://doi.org/10.3102/00028312043002163

I have really enjoyed the inquiry-based learning focus of the Master of Education program at Laurier. I have had the chance to explore a broad scope of research questions, and to narrow down my search to dig deeper into the research. Broadly, my research interest is accessible education for students with complex communication needs (CCN). You will see me use the CCN acronym as a substitute for the more commonly-used term, "nonverbal" because CCN is used in the academic literature, and because "nonverbal" implies that the student is "without words." More on the complexities of these terms in a future post!
For students who have limited or no speech, it's vital to focus on augmentative and alternative communication (AAC) to include them in the classroom community and to enable their full participation in learning. A speech and language pathologist (SLP) typically assesses students, sets communication goals, and prescribes one or more types of AAC. This can be a form of technology, such as our daughter's eye-tracking computer system, but it can be many other things, as well. In their new book, Fundamentals of AAC, Hall et at. (2022) provide the following definition which highlights the kind of interaction needed for engagement in education:

Practitioners and researchers have done a great job of documenting the best practices for implementing AAC use in schools, and we should be grateful for this knowledge. That said, the research-practice gap is also well documented. The knowledge of how to do it exists, but it is not happening in most schools. This may not come as a surprise to those of you who have been advocating for better staff training and AAC implementation. The SLPs tend to make really helpful recommendations, but there is a breakdown in building capacity in most schools. There are several reasons why AAC best practices are not yet a natural part of every school.
To organize my research, I have taken advantage of The Participation Model, first developed by Rosenburg and Beukelman in 1987. It was adopted by the American Speech-Language=Hearing Association in 2004. It is most commonly attributed to Beukelman and Miranda (2013), and can now be found in the latest edition of Augmentative & Alternative Communication (2020) by Beukelman and Light. 

The Participation Model focuses on what's preventing participation so that we can find ways to remove those barriers and promote participation. Access barriers are related to the student's disabilities while opportunity barriers are related to the environment. My research focus is on opportunity barriers, but you can have a look at some of my commentary on access barriers at this link if you want to know more.

I've been learning more about each of the categories of opportunity barriers and the numerous examples of each. I took a course in policy analysis, for example, and I look forward to sharing more in future posts. I'm currently doing an independent study on mathematics education for students with CCN, a relatively under-researched topic. In the spring, I will begin my own research into the stories of parents about access to education for their children who use AAC. Stay tuned!​

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