Imagining the Future: Increasing Collaboration Among Pediatric Medical Providers, School Based-SLPs, AAC Specialists, Educators & Parents
There are days when I feel like I am not making any progress. I was having one of these days when I reached out to a good friend and she encouraged me to carry on despite my slump. So, I have decided to continue blogging on the issue that is of utmost importance to me, even before I hone my writing skills to a level acceptable to myself (and the general public) .
I believe that the issue of importance is one of civil rights. Specifically, the rights of all individuals with disabilities, their parents, their friends, the people who support them and their communities. We can look back over the last 100 years and pat ourselves on the back for the progress we have made, but we need to be cognoscente that these are short term wins (Kotter, 1996) and we have a long road ahead.
I tend to focus on the wrongs that are being committed against individuals with disabilities and I am comfortable with the words discrimination, abuse, failure to educate and neglect when we consider many aspects of the care and education of this diverse, heterogeneous population that we identify as disabled, handicapped, presenting with special needs or other labels deemed fitting. However, talking and thinking about the civil right's issues that surround these individuals makes people feel uncomfortable. If we are to be exposed to their realities, it seems we only have the stomach for uplifting stories, usually stories of how a “typically developing” person did something great for someone with a disability. The alternative, an event we find seriously surprising; a person with a disability does something “typical”.
I started a Facebook page for my pending nonprofit Augment Oregon and immediately began to recognize a pattern. When I posted a rant, no one responded by checking the coveted LIKE button. When I posted a quote or link with a picture, a happy smiley picture of a child with or without a disability, I got significantly more “LIKEs” than without. I get that exposing ourselves to the unfortunate realties for others can make us feel sad, this due to the amazing ability we humans have, empathy. And, experiencing empathy when it isn’t a pleasant feeling is something we can tolerate for only so long, in small doses if you will.
I have been fortunate to know many individuals who work with individuals with disabilities and they are so positive and hopeful about the future and the potential impact of their work. I observe them carefully, quite honestly wanting to experience their rosy outlook for myself. But, I have to be true to my own experiences and the need I feel to present my observations despite the fact that they are not always the happy story we want to hear. There is room for both perspectives, the one that celebrates the wonderful events that are occurring and are improving the lives of individuals with disabilities, but also the events that are or are not happening that contribute to a population that has not yet, in my opinion, seen their rights fully realized.
I have a professor who, on more than one occasion said, you are experiencing “culture” when you experience something shocking and no one else around you even bats an eye. More often than not, this has been my experience as an educator in the k-12 public school system and as a member of American society as a whole. I was appalled when Diane Sawyer (whom I respect) said of the Pope, “…he even kissed a disabled man.” Was everyone else watching the news that night appalled as well? Did they even notice? Or worse, did they think kissing a man with a disability was something to revel at? Do we still believe that disability is contagious?
As my husband and I watched a Toast to 2013 on T.V. New Year’s Eve, we watched a story of how a high school basketball coach allowed a teenager with disabilities to play the last few seconds of a basketball game. He shot a basket and scored for his team in the final moments before the game buzzer rang. I want to understand this; he got to play a few minutes of an entire season? That’s it? All the nondisabled people, for lack of a better term, gave up a few minutes and are heroes on the nightly news? I saw the look of pure joy on the student’s face, it was a valuable experience for him, but am I the only one that thinks we can do better? Way better?
I am raising a daughter with special needs. I can create a world that that tells her she was born perfect, just the way she was meant to be. I can include her in every aspect of our lives, I can have high standards for her and I can provide experiences as well as accommodation and tools to help her access those experiences when needed. But, I have to let her walk out our door. To date I have completely failed to get many influential people in her life to support my vision for her. Why? Because we live in a culture that has yet to respect the value of every individual. People with disabilities are victims of abelism (Hehir, 2005), a phenomenon that is often subtle and hard to capture in the moment, but it is there, a duplicitous form of discrimination imposed on those with disabilities by able bodied or “typical” persons, often resulting in unnecessary barriers laid in their paths.
My hope in blogging about the civil rights of individual with disabilities and the realities of abelism is to change what we see when we encounter people with disabilities. We can challenge our preconceived notions, we can base our beliefs on education and research and the inherent value of every person, but have to be willing to see, first.
Hehir, T. (2005). New Directions in Special Education: Eliminating Abelism in Policy and Practice. Campbridge, MA: Harvard Educational Publishing Group.
Kotter, J. P. (1996). Leading change. Harvard Business Press.
Why is early augmentation for children who are low-verbal or non-verbal so important, and the 'wait-and-see' approach unethical?
Why is early augmentation for children who are low-verbal or non-verbal so important, and the 'wait-and-see' approach unethical?
"From birth, the social forms of child-caretaker interactions, the tools used in human society to manipulate the environment, the culturally institutionalized patterns of social relations, and language operating together as a socio-semiotic system are used by the child in cooperation with adults to organize behavior, perception, memory, and complex mental processes. For children, the development of language is a development of social existence into individual persons and into culture. (John-Steiner and Tatter, 1983, p.83)."
The inability to engage with language learning in a feedback loop, meaning the ability to both understand it and produce it, in a social and meaningful context, impacts not just language development itself, but cognition and behavior as well.
What Do Kids Tell Use About Assistive Technology Use?
I believe that children (all people, really) who might benefit from the use Assistive Technology such as a Communication Device, ultimately tell us what tools they need and how they will use them for their own benefit. When we attempt to support people in this process, we have to be acute observers and be willing to follow their lead.
I was born without a left hand. Prosthetics available to me and my parents were quite simplistic at the time and did not resemble a hand (I had a hook, shown here in the picture). I hated it, I was more capable without it, but the therapists and MDs advised my parents to use it. They believed that it made me look more "normal" and that in time, it would help me. At the age of 12, I was finally able to convince my loving parents and intelligent doctors that this was indeed not something I needed.
I have met many individuals with an arm similar to mine. Some were born this way, as I was, and others lack of a hand resulting from an illness or accident. Many of these people do not find a prosthetic device useful, again like me, while many others do. It was ultimately a personal decision for each of us.
As a speech-language pathologist assisting children to use assistive technology such as a Speech Generating Device (SGD), this personal experience is a reminder to me that although I am the specialist, the child ultimately knows themselves best. My job is to introduce the child to the tool- the communication system or systems, model their uses over time, with different communication partners, and for multiple communicative purposes. Only then, can the child decide how assistive technology is going to work for her. Successful assistive technology use or integration is a process, often iterative. We don't know what is going to work until we try. We have to be willing to reevaluate frequently and we have to respect what the child ultimately deems beneficial for themselves.
I see many of us struggling with AAC and AT implementation and use. Children, their families, their teachers and even the specialists- speech-language pathologists. It has been my experience, that when I put my direct teaching strategies aside, model the use of the communication devices, up the fun, and follow the child's lead- communication happens.
Let the child choose the assistive technology that works best- for them.
Dropbox is FREE and can be used with your computer, both PC and Mac, tablet computer and any smart phone. Once you create an account you can share files with anyone else who has an account.
Dropbox is one of several file sharing options that is promising to make collaboration between teachers, teachers and related services professionals, students and their families and more, an easy and affordable way to integrate technology into the k-12 educational setting.
File Sharing offers many exciting ways to increase the integration of the necessary technologies that help kids with special needs learn.
It was recently brought to my attention that the Oregon House Bill 2013 (HB2013) http://gov.oregonlive.com/bill/2013/HB2013/ included language related to Augmentative and Alternative Communication (AAC). Although the Bill is in its infancy and is subject to revisions, Section 10(b) currently reads:
"The program must ensure that each preschool child with a disability has access to a comprehensive plan for communication that allows the child, by the age of three years, to engage in expressive and receptive communication across all learning, home and community settings. The plan may allow for communication orally, by sign language, by assistive technology or by augmentative communication."
The initial reaction to this piece of legislation is that it is redundant because IDEA section 300.105 Assistive Technology provides for these devices and services:
(a) Each public agency must ensure that assistive technology devices or assistive technology services, or both, as those terms are defined in Sec. Sec. 300.5 and 300.6, respectively, are made available to a child with a disability if required as a part of the child's--(1) Special education under Sec. 300.36;(2) Related services under Sec. 300.34;or
(3) Supplementary aids and services under Sec. Sec. 300.38 and 300.114(a)(2)(ii). (b) On a case-by-case basis, the use of school-purchased assistive technology devices in a child's home or in other settings is required if the child's IEP Team determines that the child needs access to those devices in order to receive FAPE.
Representative Sara Gelser http://www.leg.state.or.us/gelser/ has initiated the language in the bill that addresses AAC. I recently had the pleasure of attending a public hearing regarding the bill and hearing Rep. Gelser speak specifically to the intent of section HB2013, 10(b). Although she agreed that the bill’s language was redundant, she indicated that it was necessary because she knows three year olds, five year olds and twelve year olds who are not yet augmented.
I remain torn about the necessity of this language considering its redundancy, but I am not at all in disagreement with Rep. Gelser’s observations regarding the lack of comprehensive communication systems for our most complex communicators. I believe the field of AAC has made great strides, that technology is affording complex communicators viable communication devices and strategies like never before, but it is time to step up our efforts. Providing effective AAC services requires a multi-disciplinary approach, and both the success and the failures of implementing successful AAC services never rests on the shoulders of one individual or agency alone. We need to improve pediatrician identification of communication disorders, increase their referrals to the necessary speech-language therapy services and coordinate and monitor these services through good care coordination and/or a medical home. We need to increase the pre-service AAC instruction that speech-language pathologists receive before entering the field. We need to improve the education pre-service teachers and current teachers receive regarding Assistive Technology as well as language acquisition to support our most complex communicators in the least restrictive of settings. Lastly, we need to step up our efforts to include parents in every step of the process to support their child in their journey from novice to expert with their comprehensive communication system.
I am optimistic about the future of Oregon’s students who require the use of Augmentative and Alternative Communication. Open and honest discussions about Oregon's need to increase access and use of AAC devices and services among the agencies and individuals posed to address the problem is the first step. And it is an exciting step!
The American Speech and Hearing Association (2005) estimates there are over two million people currently living in the United States with a severe communication disorder necessitating the use of an Augmentative and Alternative Communication (AAC) device and/or service. These devices and/or services provide augmentation for a person’s speech by improving their overall intelligibility or provide for an alternative to speech if they are not capable of producing speech as their primary mode of communication (Beukelman & Miranda, 1998). The first AAC device was genius; it allowed individuals who were unable to use their hands the ability to produce written language with a typewriter. Vanderheide (2002), in an article called, “A Journey Through Early Augmentative Communication and Computer Access” suggested that a man named Reg Maling, in the year 1960, was the first inventor of this device. It was called the Patient Operated Selector Mechanism or POSM and consisted of a typewriter that was accessed via a sip-and-puff controller. The last half-century of innovation and research have made significant improvements upon such inventions as the POSM and improved the lives of individuals who depend on AAC devices and strategies. Advances in computer technology, the creation of education and civil laws with provisions for Assistive Technology (AT) and increased demands in the marketplace have resulted in companies now producing hardware, software, applications and accessories that support the diverse needs of these users.
The Clackamas Educational School District’s (CESD) Life Enrichment Educational Program (LEEP) provides educational programming to students who require AAC devices and services. As an employee of LEEP, I provide comprehensive speech and language therapy services to forty students as a licensed Speech and Language Pathologist and AAC Specialist. The students who attend LEEP are diverse, but share the common characteristic of presenting with complex communication needs. According to Justice (2006) complex communication needs result from impairments related to speech, language and/or cognition. These individuals are rendered unable to produce speech, or their speech intelligibility or reliability is compromised secondary to such disorders as Cerebral Palsy, Autism Spectrum Disorder (ASD), apraxia or dysarthria. As a result, the individual may benefit from AAC devices and strategies (ASHA, 2005). These devices and strategies, at their most basic level, provide an individual a way to express a want or a need without the use of spoken words. Instead, the individual communicates by selecting a written word, a symbolic pictorial representation, a manual sign (such as American Sign Language), a miniature representation of an object or an object that represents the word.
There is a category of AAC devices referred to as Speech Generating Devices (SGD). These devices produce audible words and phrases at the command of their user. The tablet computer called the iPad™, when paired with the dynamic communication App called Sonoflex, create such a device. It is one of the most technologically sophisticated SGDs available to date. Sonoflex uses Picture Communication Symbols (PCS) that consist of color line drawings representing single words or phrases. These PCS allow individuals who cannot yet decode words, or are not likely to develop this literacy skill, a way to translate their thoughts and ideas into a symbolic form that can be spoken. PCS are designed to have a high degree of saliency and, visually appear as similar to their referent as possible. Sonflex provides organization for the PCS, much like an other semantic networking tools described by Jonassen (1995) designed to emulate the structure of human memory with an emphasis on semantic memory. This is accomplished by organizing PCS into categories and sub-categories, similar to the building of schemata. Schemata are a construct for how our memory system networks and interrelates knowledge as described by Rumelhart (1980). This strategy assists the student in locating stored PCS to produce expressive language quickly and as grammatically accurately as possible. Sonoflex color-codes PCS by their part-of-speech and makes use of a strategy called forced syntax, similar to the Fitzgerald Key. For example, pronouns appear on the left, followed by verbs, adjectives and nouns. The student does not need to use this strategy, he ultimately has an infinite capacity to combine words into sentences and generate novel utterances. Sonoflex essentially provides a PCS database that can potentially reduce the student’s cognitive load (Jong, 2009; Kirshner & Erkens, 2006) as they engage in the complex task of translating their thoughts into words, phrases and sentences with the stored PCS.
Consider the following example. A student, I will call him “Joey,” uses the SGD described. He takes the SGD to the cafeteria at school and speaks to the cafeteria helper by selecting the following PCS with his finger tips: “I” then “want” then “lunch” then “hamburger” then “please.” The helper hears his request and fills his order. He then carries his hamburger over to a group of his peers, selects several PCS and says, “What’s up everyone?” This example demonstrates a level of communication competence. It is an example of what the LEEP seeks to achieve with its students, but, rarely in fact does. So, what do LEEP students who use AAC need, to achieve this level of competence, given a SGD with the affordances the iPad with Sonoflex provide?
Teachers and parents are charged with the day-to-day realities of educating students who use SGDs. Some teachers have the responsibility of learning a different communication system for each user. This can be a daunting task when considering factors such as: teacher retention, teaching-assistant training and retention, student transition between grade levels, changes to technology and time allotted by districts for staff training. Light & McNaughton (2012) have suggested that teachers and caregivers do not necessarily understand how to teach students how to use their AAC devices, how to teach their students with complex communication needs language skills or what to expect from students who use these devices, without receiving direct training themselves. I have observed teachers initiate communicative interactions with students by speaking to them with words, with an implicit expectation that these students will understand those words, and respond appropriately using sign language, PCS or written words, without the benefit of receiving a model of these alternative communication methods. The SLPs in the LEEP do provide training to the teaching staff regarding SGD use. Could the teacher’s epistemological beliefs about language acquisition, as it relates to student use of SGDs be fundamentally different than that of the SLP? If so, what should the SLP do to make these implicit beliefs between the two professions explicit and find common ground?
Hypotheses on the process of language acquisition have been theoretically grounded in the research of Behaviorists, Nativists, Cognitivists, Social-Communicativists and Connectionists (James,1990). Poll (2010) argues for a theory characterized by finding a middle ground between Nativist and Social Interactionist Theory, that focuses on the learning capacities within the child as well as the language input from the environment that that child receives. The works of Vygotsky and Piaget are at the heart of this theory. Both argue in varying degrees: that children are born with some innate ability to learn language, children are active in their construction of knowledge through the use of artifacts and symbols, and knowledge is gained in a social context by interacting with the environment and with people (James, 1990; Vygotsky, 1978). In summary, the leading theories suggest that children do not learn language and cognitive skills by simply watching and listening to adult models, that they need to interact with those adults, the environment in which they occur, and with the artifacts or symbols that they are associated with. This could also be explained while considering a traditional feedback loop; when some of the output is returned as input. Consider the following example. A child points to a cat and says, “Dog.” His mother attends to his point and says, “That is a cat.” The child repeats mom and says, “Cat.” Based on the theory of schemata construction (Rumelhart, 1990) the child said “Dog” because the cat fit his prior schema for “Dog” which included furry, four legged animals. Because the child could speak, his mother was alerted to his misconception of “Dog” and provided him feedback, his conception of “Dog” was instead a “Cat”. In this verbal exchange with his mother, the child likely used the new information provided by his mother and the artifact, the presence of a cat, to reconstruct his schema to include cat within the concept of furry, four legged animals. Please consider the diagram below:
If language can be likened to a feedback loop, then both the understanding and the production of language are necessary for its acquisition. Vygotsky (1978) suggests that the interactions children have with language and their environment affect or become a part of the childs thinking. Jonassen (1995) suggest that language can be thought of as a cognitive technology. He encourages his reader to try to imagine learning to do something complex without the benefit of language. For the purpose of this paper the acquisition of language will be considered a cognitive task. A cognitive task or activity as described by Kim & Reeves (2007) typically involves varying degrees of social, symbolic and physical aspects. Language can certainly be social, is symbolic in nature and has a physical aspect; it can be heard and or seen (when written down). Researchers continue to study how cognition and language are related; there appears to be agreement that there is a relationship (James, 1990).
Students can engage in a cognitive learning task with technology, such as a computer, to offload some of the cognitive demands of the task (Jonnasen, 1995). This is one element of a cognitive tool. Students can learn from the technology they engage with (Jonassen, 1995) by looking up words and concepts they do not understand in educational Wikis, for example. Students can also learn with the technology. The student and the technology each fulfill an essential role for a specific task that would otherwise be impossible without this partnership (Jonassen, 1995). Consider an example of such learning with technology as opposed to from it. The student uses computer software that allows for the generation of cognitive maps (Jonassen, 1995). The user brings his knowledge to the computer, but the computer program provides him a way to represent his knowledge in a way that then allows him to manipulate the information for higher-level cognitive tasks such as analyzing the information to develop new insights. This example demonstrates technology used as a cognitive tool. When the student works with the technology, the technology affords him enhanced performance on the task as well as the possibility of lingering cognitive changes positively associated with learning (Kim & Reeves, 2007).
If language is one of the most compelling cognitive technologies as Jonnasen (1995) suggests, used to express ourselves, but also as a cognitive technology to construct our knowledge about the world we live in; the SGD is the ultimate cognitive tool. I would argue that it meets Kim & Reeves’ (2007) three characteristics of a cognitive tool. First, the technology provides affordances to the student that could not exist without the tool (Kim & Reeves, 2007). The SGD provides the student with access to spoken words. It allows the student the ability to communicate with his peers symbolically. Without the tool, the student with complex communication needs does not have access to words to express himself and must resort to some other inferior method such as pointing to make his wants and needs known. Another characteristic suggests that the user and the tool share the demands of the cognitive task (Kim & Reeves, 2007). The SGD provides the symbols and the organization needed to assist the student in retrieving words to create phrases and sentences to communicate for its various pragmatic functions; to greet, request, protest, inquire, inform, and question. It is a sophisticated database. Lastly, the partnership between student and cognitive tool must provide evidence of learning as a result of the student’s use with the tool (Kim & Reeves, 2007). If language is learned in a feedback system, if students construct their language and cognitive skills by interacting socially within their environment, with artifacts and symbols, then the SGD provides the symbols deemed essential to this learning. The student now has all the components of the language learning feedback loop. Anecdotally, I have observed increased receptive language and cognitive skills as a result of this partnership between student and SGD when used as a cognitive tool. What I need now is empirical evidence to back up my observation.
Every student in the LEEP program requires the use of AAC in some form. The iPad is quickly changing these students’ access to SGD’s. If individuals with complex communication needs were provided with a SGD for use as cognitive tool, and not just for making simple choices, and it was integrated into every language and cognitive task asked of the student, not intermittently throughout the student’s day, the result would be increased communicative competence. It has been argued that students require access to a SGD to construct their language and cognitive skills, and that increased receptive language and cognition will improve the student’s ability to use the SGD to communicate for all pragmatic functions.
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