Children With Cortical Visual Impairment and Complex Communication Needs: Identifying Gaps Between Needs and Current Practice

Sarah W. BlackstoneFei LuoJesse CancholaKrista M. Wilkinson and Christine Roman-Lantzyhttps://doi.org/10.1044/2020_LSHSS-20-00088

Abstract

Purpose

This scoping study sought to establish a baseline for how well the needs of children with cortical visual impairment (CVI) who use augmentative and alternative communication (AAC) are currently aligned with the services available to them. CVI is the most common cause of visual impairment in children today, and AAC methods rely heavily on vision. Yet, the prevalence of CVI in children who use AAC methods is not yet known, and there is virtually no research concerning use of AAC with children with CVI. Our overarching goals were to identify barriers and suggest priorities for improving outcomes for these children.

Method

Surveys were distributed anonymously online to professionals from multiple disciplines in different school-based settings and to parents of children with CVI who use AAC.

Results

School-based professionals identified many barriers, including a lack of knowledge and skills about CVI and about AAC, limited access to training and experts, and concerns about services being delivered in isolated silos with limited time allotted for inter-professional collaboration and planning. Parent reported that their children (Mage = 11 years) continued to rely predominantly on body-based forms of communication and lacked access to symbolic language, which, in AAC, is primarily visually based.

Conclusions

The barriers to services identified by school-based professionals indicate a need to develop and disseminate reliable information about CVI and AAC, both at a preservice and in-service level and, while doing so, to respect the diversity of stakeholders who need this information, including parents. Future research on what types of AAC approaches support the development of language and communication skills for children with CVI is essential.

Children with complex communication needs who are unable to produce intelligible speech frequently rely on augmentative and alternative communication (AAC: see Beukelman & Light, 2020, for thorough considerations of AAC technologies and interventions) to express their needs, wants, and preferences; ask questions; establish friendships; and participate in their families, classrooms, neighborhoods and communities. These children are a heterogeneous group whose disabilities range from mild to severe and are caused by a myriad of medical diagnoses, both congenital and acquired. The AAC methods they use often include a combination of gestures, facial expressions, manual signs, and body postures (unaided AAC), as well as photos, pictures, pictographic symbols, words/phrases, and letters that support their development and use of language and literacy skills. These aided AAC “language symbols” are typically displayed on communication boards, books, grid-based displays, keyboards, digitized and synthesized speech-generating devices, tablets, smartphones, and/or computers. During social interactions, these children select symbols using a body part (e.g., pointing with a finger, eye gaze), switches, and/or interfaces designed to accommodate for their motor, sensory, and/or cognitive challenges (Beukelman & Light, 2020).

Cortical Visual Impairment

Most AAC methods rely substantially on vision (Higginbotham et al., 2007Wilkinson & Jagaroo, 2004). For this reason, special consideration must be given to constructing AAC for children with visual impairments. Ocular conditions related to the eye itself can cause blindness and clearly impact a child’s ability to use AAC. However, the leading cause of visual impairment in children today is cortical visual impairment (CVI; Good et al., 2001Jan et al., 2006). CVI is a brain-based visual impairment caused by damage to, or atypical structures of, visual pathways and/or visual processing centers of the brain (Huo et al., 1999). CVI is associated with “unique visual and behavioral characteristics that affect a person’s ability to understand what is seen” (American Conference on Pediatric Cortical Visual Impairment, 2012–2013Roman-Lantzy, 20182019). Children with CVI often have other associated neurological conditions (Huo et al., 1999), including cerebral palsy.

CVI is considered an underreported, underdiagnosed, and undertreated condition (Gardo, 2005Good et al., 19992001Jan et al., 2006Khetpal & Donahue, 2007). Although prevalence data for CVI in the United States remain unknown, Nielson et al. (2007) have suggested that at least 10.5% of children with developmental disabilities may have CVI. The National Center for Education Statistics (2020) reported that 7.1 million school-aged children received special education services in the United States in 2018–2019. Although that estimate includes children with specific learning disabilities, the National Center for Education Statistics estimate, combined with the estimate of CVI prevalence (Nielson et al., 2007), suggests that up to 700,000 children in the United States who receive school-based services may have diagnosed or undiagnosed CVI. This is consistent with arguments from Hoyt (2019), who called CVI a “public health concern of high significance,” stating that “Cortical visual impairment (CVI) is an epidemic.… In the most conservative estimates…60% of the kids seeking service for visual impairment in northern California have some form of CVI.” The increasing prevalence of CVI in western nations is thought to reflect substantial advances in perinatal care practices over decades, increasing the survival rates of at-risk infants.

In terms of service provision for children who have CVI, Jackel et al. (2010) surveyed 80 parents of children with CVI to get information about (a) if, and how, a diagnosis of CVI was obtained; (b) what educational supports parents had received for their children with CVI; and (c) how parents had perceived those supports. Parents reported that they felt they had to fight to get a diagnosis of CVI and that they were “on their own” in learning about visual impairment, finding appropriate services for their children, and educating their children’s teachers and other service providers about CVI. In a follow-up survey a decade later, Jackel (2019) reported that parents were now more likely to get a timely diagnosis of CVI from a medical professional (ophthalmologist, optometrist, neurologist), but they continued to raise concerns about the lack of support their children received in their educational programs. Parents rated their child’s Teacher of the Visually Impaired (TVI) as “competent” but rated their children’s teachers (regular and special education) as “not competent.” Other service providers fell between “competent” and “not competent” at an equal rate.

Few assessment and intervention protocols are available to professionals that enable them to assess and track progress in vision function over time. Yet because of brain plasticity and other factors, many children with CVI can be expected to recover at least some functional vision over time (Hoyt, 2003Huo et al., 1999Hyvarinen, 2006Roland et al., 1986Swaminathan, 2011). One tool for measuring progress is the CVI Range (Roman-Lantzy, 2018), a functional vision assessment tool with established reliability (Newcomb, 2010), which offers a helpful guide to educational and clinical programming for children with CVI (Blackstone & Roman-Lantzy, 2019Howery & Barros, 2020).


Implications of CVI for AAC Service Provision

To date, virtually no research attention has been given to the implications of CVI for the construction and delivery of AAC tools, technologies, services, and interventions. Boster et al. (in preparation) conducted a scoping literature review asking what research evidence exists to support decision making for individuals with CVI who use AAC tools, strategies, and technologies. They reviewed seven major databases and found a substantial compendium of published research in CVI and, separately, in AAC. However, of these large bodies of literature, only eight intervention studies in five journals1 have included study participants with a diagnosis of CVI who use AAC. Of these, two were case studies and seven were single-subject designs (four ABAB; three multiple-baseline). Participants ranged in age from 3 to 17 years. In all eight studies, a single outcome measure (i.e., switch activation) was examined. Although some accommodations for vision were noted (using tactile symbols, large fonts and high contrast backgrounds, as well as arranging the environment, modifying academic materials, etc.), no study reported information about the CVI diagnosis or considered how CVI characteristics might have influenced participant selection, study design, and/or study outcomes. None of the studies provided information on how to assess and track functional vision or use the results to modify and adjust AAC intervention.


Purpose

Understanding CVI and that it will impact learning, language acquisition and communication are necessary for the development of effective educational and clinical approaches, including AAC service provision (Edelman et al., 2006Roman-Lantzy & Lantzy, 2010). Yet, virtually no research exists concerning best practices in this regard. Given the lack of existing information, an important step in this process is to identify the relation between the needs of children with CVI who require AAC and the services available to them. The current study surveyed school-based professionals who currently serve these children and parents of children who have CVI. Obtaining perspectives from both groups was important to gain insights not just from those who are providing the services, but from those who are receiving those services (see Crais et al., 2006, or Mandak et al., 2017, for examples of similar approaches). Two other groups (community-based professionals and academic faculty) were surveyed; however, here, we focus solely on services for children in schools.

The first aim of the study was to obtain information from school-based professionals from multiple disciplines who work with children with CVI who use AAC. We sought to learn more about their perspectives on the state of service provision for these children and identify gaps between needs and services. Survey questions focused on (a) barriers school-based professionals face in providing services to children with CVI who use AAC, including the knowledge base of these professionals; (b) opportunities provided by employers of school-based professionals in areas relevant for services delivered to students with CVI and AAC; and (c) priority areas to consider in improving services in educational settings for these children.

The second aim of the study was to obtain the perspective of parents of children with CVI on their child’s services, including the types of services their child received and their perspective concerning their child’s use (or nonuse) of AAC for communication, and their perceptions of accommodations and barriers to success. This component of the research builds on other efforts to solicit parent perspectives on barriers and supports for AAC use by their children with significant communication disabilities, including parents of children with cerebral palsy (O’Neill & Wilkinson, 2020) and those of children with Angelman syndrome (Calculator, 2014). Parents have unique insight into their children’s skills and the way that AAC does or does not integrate into their existing family structures. Survey questions addressed (a) current educational programs children were enrolled in and types of services received; (b) current communication methods children most frequently used (body-based, nonelectronic, electronic), including language symbols children understand and use; and (c) information about intervention strategies and their perceived effectiveness, as well as barriers to success.


Method


Survey Development

To better understand the needs of children with CVI who require AAC and the services available to them, two surveys were created (see Appendices A and B). Although surveys/interviews have been used to examine parent perspectives on the use of AAC technology by children with complex communication needs (Calculator, 2014O’Neill & Wilkinson, 2020), to our knowledge, no previous surveys have addressed children with CVI who use AAC. As a result, the item construction process for each survey began with a literature search. Questions were developed using a collaborative and iterative process involving the project staff and professionals who had extensive experiences working with children with CVI who use AAC. An advisory council, composed of professionals in speech-language pathology, vision, education, psychology, and statistics, reviewed versions of the surveys for usability and relevance, and questions were refined accordingly. The final question selection, the response type for each question, and question presentation order were decided based on the likelihood questions would help identify current gaps between the needs of children with CVI who use AAC and the services available to them.

There were 12 questions in the survey for school-based professionals (see Appendix A). Questions 1–4 asked respondents to provide background information about their location, professional roles, credentials, and work setting(s). Questions 5–7 asked respondents to provide information about the ages and diagnoses of children they currently serve in the schools. Questions 8 and 9 aimed at obtaining information on in-service/continuing education training in CVI, AAC, and/or CVI and AAC offered by employers. Questions 10 and 11 focused on identifying barriers faced in delivering services to children with CVI who use AAC. Question 12 asked respondents to select three top priority areas they thought would improve services for children with CVI who use AAC.

There were 18 questions in the survey for parents (see Appendix B). Questions 1–5 asked about basic information such as medical and educational diagnoses. Questions 6 and 7 elicited information about the children’s current educational program and services being provided. Questions 8–11 were used to obtain information on the AAC methods and language symbols that their children currently were able to understand and use. Questions 12–15 asked parents about the educational and clinical strategies being used with their children, and Questions 16–18 provided parents with the opportunity to share additional information.

From the questions, two online surveys were developed using REDCap electronic data capture tools hosted at the Vanderbilt University Data Core Services (Harris et al., 20192009). Different response types were used in the surveys. Some questions required a single-choice response (e.g., residing state). Some questions required multiple-choice responses (e.g., medical diagnoses, student populations served). Some questions required a Likert style response. For example, parents were asked to rate if they believed the school team took their child’s AAC and CVI needs into consideration (1 = none of the time through 5 = most of the time). A few questions required a text response such as the job title for the school-based professionals. If “Other” was listed as one of the choices, the respondents were asked to provide a text response to specify “Other.”


Procedure

All procedures used in the study were approved by an independent institute review board before the distribution of the surveys. Given that little is known about the gaps and needs of children with CVI who use AAC, nonprobabilistic convenience sampling was adopted. Respondents were recruited via two methods. The first method was an e-mail invitation with a link to the survey sent to school-based professionals and to parents whose e-mail addresses were available to the researchers. The second method was a link to the survey posted on professional presentations, professional websites, and social media.

The survey was open from March 7, 2019, until June 15, 2019. Two additional surveys were submitted after June 15, 2019. The results from these surveys were included in the data analysis.


Participants

A total of 272 participants responded to the surveys, including 209 school-based professionals and 63 parents. Of the 209 school-based professionals from 35 states, 92% reported providing direct services. Table 1 illustrates different disciplines represented in the survey.

With regard to work settings, over half of the school-based professionals (62%) reported they worked for a public school system: 45% worked as itinerants while 18% worked at a single site. The rest reported working in other settings (special education school, school for the blind, etc.). These professionals had caseloads that included clients in elementary schools (79%), middle schools (66%), preschools (65%), high schools (57%), infant/toddlers (24%), and postsecondary school/other (29%). Most school-based professionals reported having children on their caseloads with cognitive impairments (89%), complex communication needs (87%), CVI (86%), motor impairments (84%), and language impairments (85%). American Speech-Language-Hearing Association’s (ASHA) most recent 2020 SLP Schools Survey (2020) indicates that 63% of speech-language pathologists (SLPs) report serving students who use AAC. There were no data that addressed vision issues. Although clearly further research is warranted to confirm, we believe that our sample is likely to be representative of professionals serving children with CVI who use AAC.

Participants reported providing services to children/youth with diverse medical histories. The most frequently selected diagnoses were cerebral palsy (77%), chromosomal abnormalities (58%), and autism spectrum disorder (58%). Other diagnoses selected were common to the medical histories of children with CVI and children who use AAC (Blackstone & Roman-Lantzy, 2019). More than 30% of respondents indicated they worked with children with a history of perinatal hypoxia, periventricular leukomalacia, cerebral vascular accident, neonatal stroke, structural abnormalities, and intraventricular hemorrhage.

A total of 63 parents participated in the survey. Among them, 56 parents reported living in 22 different states. The average age of their children was 11 years (range: 2–34 years). Most children (89%) were between the ages of 3 and 18 years. The remaining were toddlers (2%) and adults (7%; ages 24–34 years). Most parents (91%) indicated their children had received a CVI diagnosis from a medical provider at a mean age of 3.9 years (SD = 3.8 years; range: 0–15 years). Eighty-four percent of parents also reported their children had been diagnosed with speech/language problems requiring AAC at a mean age of 3.3 years (SD = 2.7 years; range: 0–15 years). Nearly half of the parents reported that, in addition to CVI and complex communication needs, their children had a diagnosis of cerebral palsy and/or cognitive impairment.

Most parents (80%) indicated their children currently attended school. Of these, about half (49%) were enrolled in a special education classroom. Others were attending a preschool, regular education classroom, a school for the blind, a private school, or were home-schooled. Parents also reported their children received supportive services from many different specialists with a frequency that varied from no service to daily service, as shown in Table 2.

More than half reported their children received daily services from special educators and weekly services from an SLP, occupational therapist, and/or physical therapist. Far fewer reported their children received weekly services from a vision educator or orientation/mobility (O&M) specialist. In fact, 47% of the parents reported their children received no services from O&M specialists and 21% of parents reported their children were not receiving services from a vision educator. Results also showed that vision educators and occupational therapists were somewhat more likely than other professionals to provide “consult only” services.


Data Analyses

All responses from school-based professionals and from parents were collected and stored in REDCap (Harris et al., 20192009). Data were exported to the software R (The R Foundation for Statistical Computing) and SAS 9.4 (The SAS Institute) for complete data analysis.

Most responses were categorical in nature (e.g., state of residence, medical diagnoses given a prespecified list) with the rest as ordinal (e.g., body-based method child uses to communicate: never, seldom, sometimes, often) or quantitative (e.g., age or Likert style scales such as rating of significance of barriers to access to resources and materials: from 1 = not a barrier to 5 = very significant barrier). A few responses were open-ended text (e.g., “Other specify”).

The mean and standard deviation were obtained for quantitative variables. Student t tests (two-sample or paired) were carried out when comparing means. For categorical data, standard frequency distributions were constructed for univariate variables and RxC contingency tables were constructed for cross-tabulated multidimensional data.

For the ease of interpretation and analysis, responses using Likert style scales were first grouped into smaller classification levels before calculating standard frequency distributions or contingency tables. For example, for barriers to service provision, school-based respondents were given eight barriers to services for children with CVI who require AAC and asked to rate each on a scale of 1–5. Responses were then grouped into classifications of minimal barrier (1 or 2), somewhat a barrier (3), or significant barrier (4 or 5). All statistical hypothesis tests were carried out using a 0.05 significance level.

The responses to open-ended questions were analyzed using the following steps. First, the responses were reviewed by two researchers independently to identify general categories. Second, the two researchers discussed the resulting categories until they achieved 100% agreement. Last, the standard frequency distribution of the obtained categories was calculated.

Because all surveys permitted respondents to choose not to respond to specific questions, sample sizes sometimes varied across items within and between survey groups. As a result, only percentages were reported.


Results


Barriers to Service Provision

Of the 209 respondents who ranked the barriers, 52% ranked time limitations as a significant barrier. Access to resources/materials or access to experts was also ranked as a significant barrier by 42% and 40% of respondents, respectively. Lack of knowledge about CVI was ranked as a significant barrier by 35%, and lack of knowledge about AAC was ranked as a significant barrier by 30% of respondents. Teaming and access to assistive technology equipment were ranked as significant barriers by 35% and 34% of respondents, respectively. The two barriers that received the lowest ranking as significant barriers were support from administrators (ranked as significant by 24% of respondents) and support from parents (ranked as significant by 16% of respondents).

In a related question, school-based professionals were asked to “agree,” “disagree,” or select “don’t know” in response to four statements: (a) “Monitoring progress is essential to progress”; (b) “Speech-language pathologists don’t know enough about CVI”; (c) Teachers of the Visually Impaired don’t know enough about AAC”; (d) “Occupational therapists need to know more about AAC and CVI.” Clear majorities of respondents agreed with each of these statements (90%, 83%, 67%, and 78%, respectively). Respondents also were asked to respond to seven statements related to Individualized Education Programs (IEPs) and classroom practices. Figure 1 shows that most agreed that “planning for children with CVI who use AAC in classrooms is difficult” (75%), “IEP teams lack the knowledge they need to develop and implement appropriate IEPs” (63%), and teachers lack the time (47%), skills (62%), and resources (58%) they need to serve students with CVI who use AAC. About half agreed “it is difficult to measure progress” for these students and that personnel lack administrative support.

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Training Opportunities

In response to the question about whether their employers had offered training opportunities relevant to children who use AAC, children with CVI, and/or children with CVI who require AAC, 189 respondents responded. Sixty-one percent reported their employer offered opportunities related to children who used AAC, 47% reported their employer offered educational opportunities related to CVI, and 31% reported their employer offered educational opportunities related to children with CVI who require AAC. A follow-up question asked how useful respondents considered the training they had received. In response, 45% of respondents rated the training as “very useful” and 30% rated it as “not useful.”


Priorities Toward Improving Service Delivery

School-based professionals were given a list of eight priority areas to select from and could also select “other.” They were asked, “If you could prioritize areas/actions that would improve services for children with CVI who use AAC, what THREE priorities would you select?” from the choices provided. Of the 175 who responded to this question, top priority areas selected were as follows:

  1. Access to training/in-services on effective CVI assessment tools and intervention strategies (53%).
  2. Access to materials and equipment staff needs to implement effective CVI/AAC programming during school-based activities (51%).
  3. Ongoing access to team members who can guide programming for students (preschool through high school) with CVI who use AAC (46%).

Other priority areas professionals selected were providing environmental accommodations in classrooms (32%), yearly assessments of students with CVI who use AAC with results reflected in IEPS across subjects (28%), longitudinal studies documenting outcomes and informing practice (21%), and outside expert reviews of current practices (12%).


Perspectives of Parents of Children With CVI Who Use AAC

The results from the survey for parents showed their perspectives in the following three areas: AAC methods, language symbols understood and used, and accommodations.


AAC Methods

Several survey questions asked parents about AAC approaches their children currently use. For example, they were asked to answer “What body-based, non-electronic and electronic methods of communication does your child use and how often does your child use these AAC methods?” Figure 2 illustrates that the majority of parents reported that their children depended primarily on body-based methods to communicate, with between 64% selecting the use of body postures and 96% selecting use of vocalizations often or sometimes. Parents also reported that speech (51%) and manual signs (35%) were used often or sometimes. In contrast, as shown in Figures 3 and 4, less than half of the respondents reported that their child used either nonelectronic and electronic AAC methods often or sometimes, with the greatest number of parents reporting that their child used nonelectronic commercial AAC products (47%) and simple speech-generating devices (46%) often or sometimes.

Figure 2. Body-based methods and frequency of use reported by parents.
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Figure 3. Nonelectronic AAC methods and frequency of use reported by parents. AAC refers to augmentative and alternative communication.
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Figure 4. Electronic AAC methods and frequency of use reported by parents. SGD refers to speech-generating device.
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To compare between-communication methods (viz., body-based, non–electronic-based and electronic-based), a summative score of item responses within each method was calculated on combined item categories. The categories “Often” and “Sometimes” were combined and given a score of 1, and the categories “Seldom” and “Never” were combined and given a score of 0. All items were summed within method across respondents. The summative score measures the preponderance of “Often/Sometimes” combined response. Descriptive statistics established the body-based summative score to be 4.8 (SD = 1.4), higher than both the nonelectronic AAC methods at 1.6 (SD = 1.7) and the electronic AAC methods at 1.4 (SD = 1.1) along with paired differences between groups. A paired-samples t test was performed to test that mean differences between methods and showed body-based methods were used significantly more often than both nonelectronic (Students’ t = 11/05, adjusted p < .001) and electronic AAC methods (t = 14.94, adjusted p < .001). However, nonelectronic AAC methods were not used differently than the electronic AAC methods (t = 0.75, adjusted p = 1.0).


Language Symbols Understood and Used

Parents were asked to identify the types of language symbols their children currently understood and used. Figure 5 presents the data from parents who responded. Not all parents responded to each type of language symbol listed on the survey. For instance, only 33 out of 63 parents selected personal photos as language symbols that can be understood and/or used by their children. Among these 33 parents, 91% indicated their child understood personal photos while 64% indicated their child was able to use them to communicate. Similarly, of the 26 parents who selected commercial symbols, 85% indicated their child understood them and 69% used them. Of note is that very few parents indicated their children (Mage =11) were able to understand and/or use text (e.g., letters, words, or phrases) to communicate.

Figure 5. Language symbols understood and used reported by parents. Multiple selections were possible for this item. Only single-item responses are shown.
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Accommodations

Forty-seven parents responded to the question, “What accommodations does your child’s team make to help your child access and use AAC approaches to communicate?” The parents were given a list of possible accommodations including “Other” to select from. Of these, parents indicated that the team limited the number of symbols on a display (66%); considered the display background (57%); used color (51%); used lighting, such as tablets (51%); considered access issues (51%); provided communication partner support (49%); highlighted symbols (38%); selected symbols that represent concepts meaningful to the child (38%); considered how to arrange symbols on a nonelectronic or electronic display (30%); and taught the meaning of symbols (30%). Parents also reported accommodations to support access to educational materials and instruction, including “positioning of desks/workstations in the classroom” (70%), adapting materials (62%), and considering environmental factors like lighting and noise (51%). A minority of parents reported that teams provided ongoing assessments or modified materials/strategies as needed.


Additional Information

This question was open-ended and did not require a response. We asked, “What is/is not working for your child at home, in school and in the community?” Only 41% of the 63 parents responded regarding home, 33% regarding school, and 17% regarding community. Those that responded focused on what was “not” working. Parents wrote in their text responses that they were concerned that teachers and service providers lacked the knowledge, training, resources, and support needed to work with their children. Only 23% of the parents indicated their children always had a way to communicate. In response to the question “What is the biggest obstacle to your child using AAC?”, many pointed to AAC-related obstacles (42%), team issues (32%), and AAC/CVI concerns (24%).


Discussion

The results obtained from the two surveys demonstrated not only the perspective of school-based professional but also that of parents with children with CVI who use AAC. School-based professionals reported existing barriers to providing services to children with CVI, such as time limitation, access to resources or materials, and a lack of training opportunities needed to gain knowledge to work with children with CVI who use AAC. They expressed the need for CVI assessment tools and effective intervention strategies, as well as materials and equipment to implement effective interventions. The parents of children with CVI who use AAC reported their children depended primarily on body-based methods to communicate. Fewer children understood and used symbolic language, such as pictographic symbols or text. Parents also reported some accommodations provided by the IEP team (limiting the number of symbols on a display, considering the display background, etc.).

CVI is the leading cause of visual impairment in children today in western nations, and the unique characteristics of CVI substantially affect a child’s ability to understand what is seen (American Conference on Pediatric Cortical Visual Impairment, 2012–2013Roman-Lantzy, 20182019). When children with CVI have complex communication needs that require AAC interventions, the effects of these visual challenges are likely amplified, given that many AAC interventions rely on visual forms of communication supports (Wilkinson & Jagaroo, 2004). An understanding of how AAC services are, or could be, integrated with the services of vision specialists and other professionals is urgently needed to optimize communication outcomes for these children (Blackstone & Roman-Lantzy, 2019Boster et al. in preparationHowery & Barros, 2020).

This survey solicited information from key stakeholders in service provision, including professionals from a variety of disciplines and school settings, as well as from parents of children with CVI. Clear patterns emerged, including (a) a gap between the services needed by children with CVI who use AAC and the services available to them; (b) lack of knowledge and skill needed to work with these children, likely due to a lack of access to the training and the experts needed to gain knowledge and skills; and (c) parents reported overwhelmingly that their children predominantly used body-based forms of communication and had limited understanding and use of symbolic language, which, for children who use AAC, is primarily visually based. The study also highlighted multiple barriers faced by school-based professionals and parents, including how to gain knowledge concerning CVI and AAC, how to gain access to appropriate resources, materials, assistive technologies, and knowledgeable professionals, and time. We will discuss each of these and conclude by suggesting priorities for actions that could improve outcomes for children with CVI who use AAC.


Gaps Between Needs and Services

A gap emerged concerning the availability of services based on children’s needs. Ninety-one percent of parents who responded reported that their children had a diagnosis of CVI, and 84% had complex communication needs requiring AAC to communicate. Yet, while a majority of parents reported that their children received services from SLPs, occupational therapists (OTs), and physical therapists (PTs) on a weekly basis, 42% of the parents indicated their children received “consult only” or “no” services from a TVI and 47% indicated their children received “no” O&M services at all. This finding is consistent with reports from Jackel (2019Jackel et al., 2010), in which parents reported being “on their own” in terms of learning about and accessing services for CVI. However, the finding takes on particular urgency for the children in this study who require AAC, given the critical importance of the effects of CVI for learning and successful use of visual forms of AAC. Most respondents, including both parents and professionals, expressed concerns about the lack of knowledge and training related to CVI and AAC currently available to service providers and parents. Professionals agreed that “SLPs don’t know enough about CVI,” “TVIs don’t know enough about AAC,” and “OTs don’t know enough about CVI and AAC” to “support children with CVI who use AAC to communicate effectively across environments,” making implementation of IEPs difficult. Fewer than half of the professionals reported receiving employer provided training in CVI (47%). Even fewer reported receiving training in both AAC and CVI (31%).

This finding is consistent with reports from Mazel et al. (2019) and indicates that professional training has not expanded beyond specialty-specific content and/or within-specialty training. Yet, interprofessional education and practice are part of the recommendations from ASHA (n.d.) and, likely, other professional organizations. Without interprofessional training, the AAC specialist is likely not to have received training on how to best design the AAC system for the visual needs of the child with CVI, while the TVI specialist may have had little training in assistive technology supports for communication. Our results illustrate one way in which such interprofessional training and practice could have a substantial impact on clinical and educational outcomes.

The parents of children with CVI who use AAC provided essential information about their children’s use of AAC. A substantial majority of parents reported that their children primarily used body-based methods to communicate in school, at home, and in the community; this is especially concerning given the ages of their children (2–34 years; mean of 11 years). Parents also indicated that their children did not understand or use traditional AAC approaches very often or at all (e.g., graphic symbols, nonelectronic books/boards, tablets, speech-generating devices, phones, or computers). Also, many reported their children did not understand or use visually based language symbols such as photos, pictographic symbols, letters, and/or text to communicate. Other researchers have solicited parent perspectives on the use of AAC tools and technologies focused on children with Angelman’s syndrome (Calculator, 2013) and cerebral palsy (O’Neill & Wilkinson, 2020). Whereas their results alert professionals to barriers families face in supporting the use of AAC approaches in everyday life, our study raises more basic concerns. Parents reported that their children with CVI who use AAC, many of whom had completed years of schooling and therapeutic services, relied primarily on body-based methods to communicate and thus are probably not able to communicate with multiple partners, across contexts, and about topics of interest to them. The limited use of visually based language symbols may also make it difficult for these children to acquire literacy skills.

Parent reports indicated that current forms of AAC interventions are not promoting receptive and expressive language development of children with CVI who require AAC. Since AAC as an intervention strategy has a substantial evidence base (e.g., see Beukelman & Light, 2020), it seems likely that the issue lies with a poor fit between the AAC design and the skills/needs of children with CVI. The vision of children with CVI can and should be expected to improve over time with appropriate interventions (Hoyt, 2003Hyvarinen, 2006Roland et al., 1986Swaminathan, 2011). Tailoring the design of AAC materials and interventions to the specific characteristics of children with CVI would likely improve intervention outcomes. Direct research is needed to examine these possibilities.


Barriers to Service Provision and Potential Solutions

Both groups cited a lack of team collaboration as a barrier. SLPs, OTs, TVIs, and teachers often continue to practice in isolated silos, delivering essential services under the constraints of tight schedules, with limited time for consultation, collaboration, and planning, all of which are essential for these children. Thirty-two percent of parents also reported issues related to collaboration among IEP team members. For example, not all team members (e.g., TVIs) were involved in addressing AAC issues and that, sometimes, when CVI and/or AAC intervention strategies were recommended, these strategies were not implemented in all settings (i.e., school, home) and/or by all service providers.

Although most professionals said they recognized parents as essential partners and team members, many parents reported they did not feel included or supported. This is consistent with other reports concerning family-centered practices, where there is often a disconnect between the perceptions of professionals and parents as to whether or not the professional is engaging in family-centered practice (e.g., Crais et al., 2006Mandak & Light, 2018a2018b). Parents also noted that they lacked guidance to support their children at home and in the community. ASHA emphasizes the centrality of the family in services for children (ASHA, 2004). Greater attention to the role of the family, guided by ecological family systems theory (Bronfenbrenner, 1979Mandak et al., 2017), is clearly needed, as is research into how these approaches can benefit AAC intervention in CVI.

Actions that might improve outcomes of children who rely on AAC were identified by respondents. Most of these recommended actions related to barriers that they had identified previously. For instance, professionals suggested the need for access to preservice and continuing education on CVI assessment and intervention strategies, as well as how to support the use of multiple AAC approaches for children with CVI at home, in school, and in the community. They also suggested a need for better access to ideas, materials, and equipment during school-based activities; for organizing teams with members who have relevant expertise (e.g., TVI); and for access to yearly vision assessments of CVI to ensure that team members understand the improvement (or lack thereof) in vision and many other challenges faced by children with CVI. Finally, longitudinal studies that could demonstrate effective ways to assess and support children with CVI who use AAC across domains (e.g., language development, literacy, numeracy, communication, participation, mobility) were also identified as a priority.


Conclusions and Future Research

Addressing the priorities identified in this study will take concerted and coordinated efforts in training, research, and information dissemination. Most respondents, including both school-based professionals and parents, indicated they lacked knowledge and training related to AAC and CVI. This suggests there is a need to develop and disseminate reliable information about CVI and AAC. While doing so, to respect the diversity of those who need it, information must be made available in multiple formats and on multiple platforms. Already a limited number of web-based learning materials exist (e.g., Perkins eLearning, Paths to Literacy, Pediatric Cortical Visual Impairment Society, PrAACtically Speaking, The Bridge School). It is necessary to provide inviting, easy-to-access articles about CVI and AAC, just-in-time instructional videos that demonstrate strategies, materials and methods, modules that schools can use in in-service or parents’ trainings and professors can use in their classrooms. Research that ends up in peer reviewed journals should be made available to key stakeholders to read and then be shared with team members and other stakeholder groups.

There is also a critical need to target undergraduate and graduate programs tasked with preparing the next generation of key professionals. Because content about CVI and AAC is relevant across multiple disciplines, the value added by family involvement and interprofessional collaboration should be highlighted. Because CVI is the leading cause of visual impairment in children today, most professionals will be likely to encounter children with this diagnosis in their classrooms and/or on their caseloads. Graduates of these programs should therefore leave school with a basic awareness and understanding of what CVI is and how both ocular and brain-based impairments can impact learning, language development, communication, socialization, participation, and the quality of a child/client/student’s life, especially children with CVI who use AAC.

Building an evidence base is essential. Single-case examples/case studies are useful in describing these children, their needs, and “what works” for them over time. To understand more about the language development of children with CVI, however, researchers should consider studying children with CVI who use their natural speech. Tools that can assess children’s functional vision (e.g., the CVI Range) can be used to examine the relationship between language development and functional vision to better inform practice for these children.

Research that helps develop initiatives that reach beyond “traditional” AAC solutions and the technologies of “now” is also needed. One potential avenue is examining the role(s) of eye-tracking devices in supporting the development of vision and language in the future. Research is also needed to explore best practices for children with CVI who have different levels of functional vision, at different ages and ability levels. For example, what are effective strategies to represent language for children with CVI who use AAC across the age span, taking into account their degree of CVI impairment? What AAC tools and strategies are most effective in providing access to language, literacy, communication skills, and active participation in everyday life (from early childhood through high school)? Results from these studies can help reveal what AAC strategies, tools, and technologies are most effective along the way, and how to measure their effectiveness.

Many survey respondents indicated there is a need for research that documents student progress over time and across developmental areas. Schools that serve children with CVI who use AAC are particularly well placed to conduct such studies, as they can document relevant progress and interventions. All authors are in some way affiliated with The Bridge School in Hillsborough, California, which serves students with severe speech and physical impairments who require some form of AAC to access language and communicate effectively. More than 60% of their students have had a diagnosis of CVI. A study is currently underway to examine trends in service provision and in child progress with AAC and other developmental areas (language, literacy, communicative competencies, math, etc.), before and after the implementation of CVI-specific AAC interventions (Blackstone & Luo, in preparation). This approach will help reveal potential best practices for children with CVI that could be scaled for uses within other schools and that could guide future experimental research.


Limitations

This study represents a first step toward identifying issues currently impacting the service delivery and outcomes of children with CVI who use AAC. Results of the study relied on descriptive data from a small sample of professionals who work with children with CVI who use AAC and an even smaller sample of the parents of these children. There is a risk that these samples were not representative of each group, perhaps due to selection bias; clearly, further research is warranted. However, despite this limitation, the study clearly documents a need for actions focused on improving AAC services and begins to provide a foundation from which to ask more and better questions and to develop and test more specific hypotheses, which lead to evidence-based practices and improve the outcomes of these children.


Achnowledgments

We wish to acknowledge Ability Central Philanthropy for their support and partial funding. Our deep appreciation goes to Vicki Casella, Executive Director of The Bridge School, as well as to the staff, students, and families who inspired this work. Finally, we wish to thank Mary Ann Romski, Rose Sevcik, and Frank DeRuyter for their support and participation in this project.


Appendix A

School-Based Professional Survey

Basic Information

1. In what state do you work? (single-choice response): list of 50 states

2. What is your current job title/What are your credentials (e.g., CCC-SLP, TVI, OTR, CVI Range endorsed, Ph.D., M.S., etc.)? (text response)

3. In what type of school setting(s) do you work? (multiple-choice response): public school district, itinerant; public school district, single site; private school; school for the blind; special education school; charter school; state agencies (e.g., regional centers, California Children’s Services, SELPA in CA); other

4. Do you currently provide direct services to children? (single-choice response): yes; no; other

Information About Ages and Diagnoses of Children Currently Served

5. What student population do you serve? (multiple-choice response): infant/toddlers; preschool; elementary school; middle school; high school; postsecondary; other

6. Please indicate the categories that describe students on your caseload. (multiple-choice response): complex communication needs; visual impairments (ocular); visual impairments (CVI); motor impairments; hearing impairments; cognitive impairments; language impairments; CVI who require AAC; medically fragile; behavioral issues; other

7. Please indicate (from the list below) the medical diagnoses of children/youth with whom you work that have CVI and/or use AAC approaches (multiple-choice responses)

  a. Congenital conditions: asphyxia; perinatal hypoxic-ischemic encephalopathy, hypoxic-ischemic encephalopathy; intraventricular hemorrhage (IVH); periventricular leukomalacia (PVL) and other white matter disorders; cerebral vascular accident, cerebral nervous system; infections that affect the central nervous system; TORCH infections (toxoplasmosis, rubella, cytomegalic inclusion disease, herpes simplex); structural abnormalities; metabolic conditions; cerebral palsy; autism spectrum disorder; chromosomal anomalies; unknown; other

  b. Acquired conditions: acquired hypoxia; open-head injuries related to blow to head or gunshot wound; closed-head injury related to vehicle accidents, shaken baby syndrome; contusions, hemorrhaging in multiple locations of the brain, concussion; childhood infection, meningitis, encephalitis, and so forth; tumor that can affect brain function; surgical treatment (of tumor); cerebral vascular accident (CVA); other

Training Opportunities

8. Does your current employer offer in-service/continuing education training opportunities in the following areas (single-choice response):

  a. Children/youth with severe communication impairments who use AAC: yes; no

  b. Children/youth with CVI: yes; no

  c. Children/youth with CVI who use AAC: yes; no

9. How would you rank the usefulness of training opportunities (Likert style scale): 1 = not at all useful; 3 = somewhat useful; 5 = very useful

Barriers

10. Rate the significance of barriers you/your colleagues face in delivering services to children with CVI who use AAC (Likert style scale): 1 = not a barrier; 3 = some barrier; 5 = very significant barrier

  a. Time limitation

  b. Access to appropriate resources and materials

  c. Knowledge about AAC (assessment and treatment)

  d. Knowledge about CVI (assessment and treatment)

  e. Access to experts/continuing education opportunities

  f. Access to appropriate equipment/assistive technologies

  g. Administrative support

  h. Coordinate team approach to assessment and treatment of children with CVI who use AAC

  i. Support from parents/guardians

  j. Please rate any additional barriers

11. Please respond to the following statements about students with CVI who use/could benefit from AAC (single-choice response): agree; disagree; don’t know

  a. Speech language pathologist who work with children who use AAC don’t know enough about CVI

  b. Teachers of the visually impaired who work with children with CVI don’t know enough about AAC

  c. Occupational therapists who work with children need to know more about children with CVI who use AAC to help with issues related to accessing communication, learning materials and the environment

  d. Planning for children with CVI who rely on AAC in classroom is difficult

  e. Teachers don’t have time to implement the IEPs of children with CVI who use AAC

  f. Teachers don’t have resources to implement the IEPs for children with CVI who use AAC

  g. Teachers don’t have the skills to implement programs for children with CVI who use AAC

  h. Teachers, instructional assistants and/or therapists in schools today lack the administrative support they need to implement programs for students with CVI who use AAC

  i. It is difficult to measure progress toward IEP goals for these students

  j. Monitoring progress in a student’s functional vision is essential to the development of meaningful programs for students with CVI who use AAC

  k. IEP teams lack the knowledge to develop an appropriate IEP and/or implementation strategies to meet the unique needs of students with CVI who use AAC

  l. Other

Priorities

12. If you could prioritize areas/actions to improve services for children with CVI who use AAC, which THREE would you select? If you feel your priority area is not included, feel free to add one by checking “Other” and specify (multiple-choice response):

  a. At least yearly assessment of students with CVI who use AAC with results reflected in IEPs across all subject areas

  b. Outside review of school’s current practices conducted by a team of experts familiar with current research/literature and best practices for students with CVI who use AAC

  c. Access to materials and equipment staff needs to implement effective CVI/AAC programming during school-based activities

  d. Provision of environmental accommodations in classrooms that address individual needs of students with CVI who use AAC

  e. Longitudinal studies that document effective clinical/education practices that result in positive outcomes for students with CVI who use AAC across domains (e.g., language, literacy, numeracy, communication, participation, mobility, etc.)

  f. Ongoing access to team members (preschool through high school) who can guide programming for students with CVI who use AAC

  g. Access to training/in-service on effective CVI assessment tools and intervention strategies

  h. Other


Appendix B

Parent Survey

Basic Information

1. What state do you live in? (single-choice response: list of 50 states)

2. How old is your child? (text response)

3. Please indicate if your child has any of the following educational/medical diagnoses? Select all that apply (multiple-choice response): cerebral palsy; cortical visual impairment; deaf/hearing impaired; blind/visually impaired; cognitive impairment; speech/language impairment; behavioral disorder; infection: congenial/acquired; hypoxic-ischemic encephalopathy (HIE); white matter damage (PVL); chromosomal abnormality; genetic condition; structural abnormalities; metabolic conditions; autism spectrum disorder; unknown; other

4. Has your child been diagnosed with CVI by a medical provider? (single-choice response): yes; no

  How old was your child when a medical provider diagnosed him/her with CVI? (text response)

5. Has your child been diagnosed with a speech/language problem requiring augmentative and alternative communication (AAC) approaches? (single-choice response): yes; no

  How old was your child when he/she was diagnosed with a speech/language problem requiring augmentative and alternative communication (AAC) approaches? (text response)

Current Educational Program

6. Is your child currently participating in an educational program? (single-choice response): yes; no. Please indicate the type of the educational program? (single-choice response): preschool; regular education class; special education class; school for the blind; private school; home schooling; other

7. Please identify services your child currently receives from specialists and the frequency of these services (single-choice response): none; daily; weekly; monthly; consult only

  a. Speech-language therapist

  b. Vision educator

  c. Occupational therapist

  d. Special education teacher

  e. Orientation and mobility specialist

  f. Physical therapist

  g. Behavioral therapist

  h. Other

Current communication

8. What body-based/no-tech methods do your child currently use to communicate? (single-choice response): never; seldom; sometimes; often

  a. Gestures (e.g., head shake—yes/no, reaching, pointing)

  b. Manual signs (e.g., drink, more)

  c. Vocalizations (e.g., laughing, squealing, babbling)

  d. Facial expressions (e.g., happy, anger, sad, questioning)

  e. Speech (e.g., recognizable words/word approximations)

  f. Body postures (e.g., head down/up to indicate interest)

  g. Movement toward person/object (e.g., going toward or away)

  h. Other

9. What nonelectronic (low-tech) AAC methods does your child currently use to communicate? (single-choice response): never; seldom; sometimes; often

  a. Photos/symbols placed strategically in environment (e.g., kitchen, bathroom, etc.)

  b. Communication book(s) with symbols/photos/text

  c. Communication board(s) with symbols/photos/text

  d. Eye-tracking board (e.g., ETRAN) with symbols/photos/text

  e. Commercial AAC product (e.g., PODD, PEC, etc.)

  f. Other

10. What electronic (high tech) communication methods does your child currently use to communicate? (single-choice response): never; seldom; sometimes; often

  a. Simple AAC device with digitized speech output

  b. Complex AAC device with synthesized speech output

  c. Tablet with communication app

  d. Smart phone with communication app

  e. Computer with software

  f. E-mail, social media

  g. Other

11. What types of language symbols (e.g., speech, text, photos, etc.) does your child currently have access to? (multiple-choice response): understands; uses

  a. Spoken words

  b. Objects

  c. Photos (personal)

  d. Photos (generic)

  e. Graphic symbols (commercial)

  f. Graphic symbols (noncommercial)

  g. Text (letters)

  h. Text (words/phrases)

  i. Other

Current Intervention Approaches

13. I believe my child’s school team takes into consideration my child’s CVI and AAC needs throughout the school day (Likert style scale): 1 = none of the time; 3 = some of the time; 5 = most of the time

14. What accommodations does your child’s team make to help him/her access and use AAC approaches to communicate? Select all that apply. (multiple-choice response):

  a. Communication partner support

  b. Use of lighting (light box/tablet)

  c. Highlighting graphics/symbols

  d. Consideration of how to use color

  e. Consideration of display background

  f. Limiting number of symbols on a display

  g. Arranging symbols on a display

  h. Making sure access to communication tools is easy

  i. Teaching my child the meaning of symbols

  j. Selecting symbols that represent concepts that are meaningful to my child

  k. Don’t know if accommodations are being made in the classroom

  l. Don’t know if accommodations are being made in therapy sessions

  m. Other

15. What is the biggest obstacle to your child’s ability to successfully use AAC? (text response)

16. What accommodations does your child’s team currently make to support his/her access to educational materials and instruction? Please check all that apply. (multiple-choice response):

  a. Positioning of my child’s desk/workstation in classroom

  b. Consideration of contextual variables like lighting, noise throughout the day

  c. Adapting materials so my child can use them

  d. Providing ways for my child to communicate at all times

  e. Providing ongoing assessment and modifying materials/strategies, as needed

  f. Keeping our family informed

  g. Providing useful ideas, accommodations and strategies for use at home/in the community

  h. Other

Additional Information

17. What other comments would you like to make about what is/is not working to support your child with CVI to use AAC approaches at home? (text response)

18. What other comments would you like to make about what is/is not working to support your child with CVI to use AAC approaches in school? (text response)

19. What other comments would you like to make about what is/is not working to support your child with CVI to use AAC approaches in the community? (text response)


Footnote

1Augmentative and Alternative Communication (4), Language, Speech and Hearing Services in Schools (1), Journal of Developmental and Physical Disabilities (1), Disability and Rehabilitation: Assistive Technology (1), and Journal of Visual Impairment and Blindness (1).


Author Notes

Disclosure: The authors have declared that no competing interests existed at the time of publication.Correspondence to Sarah W. Blackstone: sarahblack@aol.com

Editor-in-Chief: Holly L. Storkel

Additional Resources

We recommend

  1. Supporting Families of Children Who Use AACJudy Seligman-Wine, The ASHA Leader, 2007
  2. AAC With Energy—EarlierBeth E. Davidoff, The ASHA Leader, 2017
  3. Perspectives, SIG 12, Vol. 3, Part 4, 2018SIG Perspectives, 2018
  4. Cochlear Implant Collaborations Aid School Success: Parents, Schools, and Implant Centers Build Winning PartnershipsTeresa A. Zwolan et al., The ASHA Leader, 2006
  5. Project Building Bridges: Training Speech-Language Pathologists to Provide Culturally and Linguistically Responsive Augmentative and Alternative Communication Services to School-Age Children With Diverse BackgroundsPatti L. Solomon-Rice et al., SIG Perspectives, 2018
  1. A parent-centered approach to autism diagnosis in early childhoodMichael E. Mintz, World Journal of Pediatrics, 2018
  2. Many Answers to Why Children Don’t Adhere to Daily Asthma Medication​​By staff, US Pharmacist, 2018
  3. How online ADHD-related information affects Chinese parents’ decisions?Xiao-He Yu et al., World Journal of Pediatrics, 2018
  4. Painless Chronic Pancreatitis Linked to Exocrine InsufficiencyEndocrinology Advisor, 2020
  5. AACE: Why Physicians Delay the Start of Insulin in Type 2 Diabetes PatientsDiabetes In Control, 2013

Article was originally posted LSHSS-20-00088 for Language, Speech, and Hearing Services in Schools.
https://pubs.asha.org/doi/10.1044/2020_LSHSS-20-00088

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