Part 4 of 5 Children with Complex Communication Needs

In Europe and other areas of the world, the common term to refer to a neurologically-based visual impairment is CVI. In North America, the term Cortical Visual Impairment is used to de- scribe this same population of children; however, Roman-Lantzy (2019) argues that these two terms are not synonymous. She writes, “Cerebral visual impairment is a term used to describe a broad spectrum of visual processing disorders (Lueck and Dut- ton, 2015), whereas the term cortical visual impairment adheres to a stricter set of criteria that are associated with medical and educational visual impairment” (2019). The CVI Range Assess- ment is a tool that is designed very specifically for cortical visual impairment and is therefore not designed (nor appropriate) to be used with all children who have cerebral visual impairment. As a practitioner, this is where things can appear to be quite complicated. Perhaps, as Wagner, Hanser and Musselwhite state, CVI is “frequently undiagnosed and unrecognized” (p. 31) be- cause the field uses CVI to refer interchangeably to two different things. The question remains, how does one know which version of CVI we are seeing in the child? GATHERING OUR INFORMATION: VISION From a vision perspective, the TVI is charged with determin- ing what and how a child sees, typically by conducting a Func- tional Vision Assessment (FVA). For children who have low vision as a result of an ocular visual impairment and who also have spoken language, standardized approaches (e.g., vision charts) can be used to good effect to obtain fairly accurate measures of acuity, contrast sensitivity, color vision and depth perception. On the other hand, when a child has CCN and limited expressive communication, these standardized approaches are ineffective and often impossible to use. Instead, the TVI must rely on other assessment skills and strategies in order to determine functional vision. For a child with significant disabilities, CCN and suspect- ed CVI, the FVA might involve the following: • Comprehensive medical/file review, documenting any/all known or commonly associated neurological risk factors for cerebral visual impairment.

ed that they can use this tool with fidelity. This is important because, as mentioned above, this tool is best used for a specific subset of children and someone with the Endorse- ment would likely know when it should be used and when it should not be used. As the other articles in this series have so articulately pointed out, this tool is built around 10 commonly seen characteristics, and the CVI Range tool eloquently maps out where the child is functioning across all 10 characteristics. With planned, sequenced intervention strategies, these characteristics can and often do improve over time in a fairly predictable way. This information can then be taken and applied directly to informing the best presentation of the child’s literacy materials and the ideal format of their AAC system. CCN AND THE PROVISION OF AAC Successful implementation of AAC involves both the peo- ple with CCN and their communicative partner(s) (Perry et al., 2004). As the complexity of the disability increases, so does the complexity of communication needs and of finding appropriate AAC solutions, and “people with disabilities must also rely on the skills of others to help them to be a part of a conversation” (Iacono, 2014, p 83). Furthermore, provision of AAC supports and services for children and youth with CCN must not only provides a means by which they can communicate, but also provides a pathway to language development and language competence (von Tetzchner, 2017). We know that for all children, language learning is an active process that begins at birth (or before) and continues throughout life. Providing communication for every child is based on the foundational belief that every child com- municates and is capable of learning symbolic language (Howery, 2017). The field of AAC recognizes that children with CCN need ac- cess to representations of language (AAC) to support both their expressive and receptive language development. This means that they need to see their systems being modeled and used by others in order to develop their own communicative com- petence and growth in language (Dada & Alant, 2009; Harris & Reichle, 2004). And that modeling alone, while important may not be sufficient (Soto et al, 2020). In addition, there is a growing recognition that children and youth with CCN, no matter what the etiology, need access to a robust language system which somewhat simplistically may be thought of as meaning at least 100 words organized in an understandable, predictable manner (categorically, pragmatically or semantically) using a consistent and meaningful symbol system (Ahern, 2015). In order to com- municate beyond the here and now, and to grow and use lan- guage , children with CCN must have access to enough words, in a well thought out system, in order to engage in all of the various functions of language (requesting, refusing, declaring, questions, commenting, etc).

• Assessment of ocular vision.

• Extensive interviewing with the parents and school-based team, beginning with a CVI screening tool such as the one that can be found at https://www.teachcvi.net. This tool will be especially valuable to teams where CVI is perhaps sus- pected but remains undiagnosed. • In an ideal world, the TVI (or another team member) will have completed the CVI Range Endorsement offered by the Perkins School for the Blind (or at the very least had some additional professional development with this assessment tool). Someone with the CVI Endorsement has demonstrat-

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