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Empowering Literacy for AAC Users with UFLI: A Summary

3/29/2025

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This is a summary of the YouTube video linked above:

Welcome to a deep dive into literacy and AAC (Augmentative and Alternative Communication), focusing on a structured phonics program known as UFLI (University of Florida Literacy Institute). This approach has proven transformative for students with complex communication needs, and I'm excited to share insights and practical strategies that can help make literacy accessible for all.


Understanding the Importance of Literacy
Literacy is a fundamental human right. Every individual, regardless of their communication abilities, deserves the opportunity to learn to read and write. Historically, denying literacy has been used as a tool of oppression, undermining the rights of marginalized groups, including people of color and women. For individuals with disabilities, particularly those who rely on AAC, the stakes are just as high. We must advocate for their right to literacy, ensuring they have the same opportunities as their peers.

The Science of Reading: A Foundation for All Learners
The science of reading is not merely a curriculum; it's a comprehensive body of research that explores how the brain learns to read. Drawing from fields like developmental psychology and neuroscience, it provides evidence-based strategies that benefit all learners, including those using AAC. Misconceptions often lead educators to believe that non-verbal students cannot learn to read. However, research shows that all students can benefit from systematic and explicit reading instruction.
Five Key Elements of Reading Success
  • Phonemic Awareness:** The ability to hear and manipulate sounds in words is crucial. For instance, learners should be able to segment sounds in words like "bat" or blend sounds to create words.
  • Phonics: Understanding the relationship between sounds and written letters (graphemes) is essential for decoding and encoding words.
  • Comprehension: This involves understanding language, including reading comprehension.
  • Fluency: The ability to read with speed, accuracy, and expression.
  • Vocabulary: Knowing the meaning of words is vital for comprehension.

UFLI: A Structured Phonics Program
UFLI Foundations offers explicit and systematic instruction for reading skills, making it suitable for all ages, including older students and adults. The program's structure is designed to build on previously learned skills, ensuring that students progress in a logical and coherent manner.

Adapting UFLI for AAC Users

In my experience as a special education teacher, I've found that adapting UFLI for AAC users is not just beneficial, but essential. Here are some strategies that have worked in my classroom:
  • Pacing: I adjust the pace of lessons to accommodate the unique needs of my students, often taking more time to explore each concept.
  • Visual Supports: Using visual schedules and other supports can help students stay engaged and understand the flow of the lesson.
  • Choice and Interaction: Providing arrays of choices helps students engage actively. Limiting options can also aid focus for those who may be overwhelmed by too many choices.
  • Modeling Language: AAC devices can be used to model language structure and encourage students to practice using their devices in reading and writing activities.

Why Reading is Essential for AAC Users
Reading opens doors to leisure activities, personal expression, and deeper understanding of the world. For AAC users, the ability to spell and decode words enhances their capacity to communicate effectively. Many AAC systems may only offer a limited vocabulary, but through reading, students can expand their linguistic horizons and gain confidence in their communication abilities.

Implementing Literacy Instruction
Integrating literacy into daily routines is crucial. I recommend at least two hours of literacy instruction daily, spread throughout various activities. This doesn't mean sitting down for two hours straight; rather, it involves embedding literacy into different parts of the day, whether through shared reading, writing activities, or vocabulary discussions.

Common Misconceptions about Literacy Instruction
Many educators mistakenly believe that listening comprehension or simple sight word recognition constitutes literacy instruction. In reality, true literacy encompasses much more. For example, using programs like Edmark or PCI for sight words alone will not lead to genuine reading skills. Students must be taught to decode and understand the structure of words to become proficient readers.

Success Stories: Transformative Outcomes with UFLI
I've witnessed incredible progress among my students using UFLI. One student, EJ, transitioned from random letter strings to writing coherent invitations. His mother expressed immense gratitude, noting that UFLI was a game changer for her child. This success reinforces the belief that all students can learn to read when given the right tools and support.

Resources for Educators and Parents
For those interested in exploring UFLI or adapting literacy instruction for AAC users, I encourage you to access the UFLI manual and associated resources. The program offers a wealth of materials, including lesson plans, assessments, and activities designed to engage learners effectively.

Additional Tools and Supports
  • Visual Supports: Incorporate visual schedules and graphic organizers to aid comprehension.
  • Decodable Texts: Utilize decodable books that align with the skills being taught in UFLI
  • Collaboration: Encourage collaboration among educators, parents, and support staff to create a cohesive learning environment.

Conclusion: Advocating for Literacy Rights
As we advocate for the right to literacy for all individuals, especially those with complex communication needs, let’s remember that every learner is capable of growth. By employing structured programs like UFLI and adapting our approaches to meet the needs of AAC users, we can ensure that literacy becomes not just a possibility but a reality for every student.

If you have questions or would like to share your experiences, please reach out. Together, we can create a more inclusive and literate society for all.

Made with VideoToBlog using Kate Ahern Literacy and Learners with CCN Using UFLI AAC in the Cloud 2023
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How I Teach Picture Book Vocabulary

12/8/2024

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Teaching vocabulary has multiple purposes when working with students who use AAC to communicate. These purposes include vocabulary for receptive and expressive communication, including for reading and writing as well as person-to-person communication.  Picture books are important tools for teaching vocabulary for all purposes.  This is how I teach vocabulary from picture books we read aloud during shared reading:
  • Select words from the book you will be reading. Words should be level 2/3 words.
  • Use a graphic organizer to present the word, definition, definition using only words found in common AAC systems, a sentence, and a video clip or image.
  • Say, type/write the word, and spell it.
  • Ask the kids to guess what it means. Allow plenty of wait time for them to think, look at the video/graphic and make a message with AAC. The more you so this the more they will participate and make connections.
  • Share the full definition as you enter it in the organizer.
  • Using a common AAC system (or more than one if you have time) model how they could say the meaning of the word with their AAC system. (Paraprofessionals/peers could do this on individual devices so more kids see their own device modeled.)
  • If you have time ask for a sentence and write it down. If not, create a sentence yourself.
  • Review the word, definition, how to say it with AAC and the sentence one more time
  • While reading have your kids do a movement or hold up a sign or something when they hear a vocabulary word.
You need to present a word and have the student have experiences with a word many times for them to "own it". If a word reoccurs in another book you can do it again. Presenting vocabulary this way teaches tier 2/3 words using tier 1/2 words meaning - that makes it differentiated for different levels of language learning. Try to use motivating videos, images and sentences. Connect them to the students lived experiences. My students ask to do vocabulary!
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What did you think of the book?

2/24/2024

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When I first started virtual teaching of learners who use AAC (most of whom also have neurodevelopment disabilities) lots of parents (and students) were surprised when I asked, “what did you think of the book?” after every book we read.
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For speaking folks it is usually the first question we ask when talking about a book, “oh I just read The Women by Kristen Hannah.”

“Really? How was it?”would be a usual book readers conversation starter.

However, for most alternative communicators that isn’t a question they hear. They are read to or read books themselves and are asked comprehension questions about books, but no one ever asks what they thought. Many parents were shocked to realize they don’t ask their AAC using kid if they liked a book and why.
Most of my students have been with me long enough now that they answer, “what did you think of the book” before I ask it. Often times it is mostly, “like” or “I like it” as a response. Some kids I push a little further and ask them why and others often give apt reasons. We just wrapped up learning about World War Two and many books were tremendously sad or brave or unfair. Many of my students noted these things.

To anyone who doesn’t work with or know a child who uses a speech device this might not seem like a big deal but, trust me, it is. People underestimate my students; they infantalize my students; they commit ongoing educational neglect against my students. No one expects them to comment on the bravery of Anne Frank or the sadness of a child exposed to the Hiroshima bomb dying after making 1000 paper cranes or to comment that it isn’t fair how Jackie Robinson was treated.

They definitely don’t expect my students to further comment something along the lines of, “makes me think, my old school, seclusion, segregation, not fair”. So it is important for the world to know that my students DO comment on books and make deep and important connections with them - even books that are considered to be “beyond” them. I’m not saying every child makes every inference and deeply connects with every book - but typical kids don’t do that either.

I am saying that my students deserve to learn about Anne Frank and the holocaust, and Pearl Harbor and Hiroshima, and Jackie Robinson and Josephine Baker because all of these topics are things we expect everyone to know about. They do not deserve a (whole freaking) lifetime of Brown Bear, Brown Bear and The Very Hungry Caterpillar (you would not believe how common this is - preschool books their whole lives). They deserve to be asked their opinions and to be taught how to share their opinions. They deserve teachers who want to hear their opinions.
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Step In

12/7/2023

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When you see a child having what you view as an “attention seeking behavior” you have two choices. You could decide you can “fix” that behavior and step away and ignore them. Or you could think, “they’ve got my attention, now what do they need?” If you chose the second one you will likely find they are seeking a connection for some reason - perhaps to get another need met, perhaps out of fear, perhaps due to a lack of skills to get the connection in another way. Then you can step towards them, co-regulate and show them how to express their needs safely and without fear of judgment.

Both choices on your part have long term consequences beyond that moment and that interaction. Ignoring may work, if your definition of “work” is only that it decreases the “attention seeking behavior”. Let’s be clear, most of us were trained to take this view. This view is rooted in ABA and oversimplified views of antecedents, behaviors and consequences.  It is not backed by neuroscience or attachment theory.

Being ignored can lead to feeling unheard, it can lead to social anxiety, it can lead to sadness and depression, in short, it can be traumatizing. Ignoring tends to be called, “limited caregiver responsiveness” in developmental and attachment research.  That research is clear that having needs ignored and letting distress be unattended to is detrimental. 

There is an idea that you can ignore a behavior and not the individual, but this just isn’t true. You are either ignoring the individual while they are engaging in the behavior or you are creating cognitive dissonance by acting as if the behavior isn’t happening while you interact. Ignoring someone who is distressed and expressing it in unpleasant or even dangerous ways sends the message that their distress doesn’t matter, that in order to get their needs met they must pretend to not be distressed.  We forget that the individual likely doesn't have the skillsl to better share their distress - or they would be using them.

The other option is to step in to co-regulate by recognizing their distress, joining them in that space as a calming presence, and working with them to reach a place of less distress. When you do this you teach them that they and their feelings are valuable. They feel seen and heard. They learn that they deserve to feel safe and regulated. They also learn how to begin to regulate themselves. When you pair this with learning coping skills at times when they already feel calm and regulated they begin to learn to recognize their emotions and use tools to stay in control even when distressed.

So many of the children I work with, who are all non-speaking and use speech devices, and often have other disabilities, were in educational settings that caused significant educational and emotional (and way more often than anyone would believe physical or even sexual trauma). In their previous settings they were ignored in times of distress. This is nearly universal in their experiences.  When they became distressed they were ignored by those who were supposed to be caring for them.  Oftentimes, the only way to end the ignoring was for them to become regulated without assistance AND for them with some demand (such as sitting quietly or doing a task).  Being ignored in those times taught them either to be louder, more demanding and more aggressive or taught them help was never coming and left them passive. Or it left them vacillating between the two.

Chronically being ignored just further ingrained a belief that their distress would never stop or that they should just accept, without struggle or complaint, their own distress while being sure to not let it bother anyone else. Ignoring is gaslighting in that it creates a false reality of whatever the person in power says is reality. Ignoring is detrimental because it becomes internalized that if someone doesn’t pay attention to you then you are doing something wrong and you need to change, creating constant anxiety. Ignoring is traumatic.

For individuals who are non-speaking and who have other disabilities, these behaviors are often the only communication they can access at that moment of distress. This may be because they don’t have the physical tools to communicate, because their communication partner doesn’t understand their communications or because at that moment they don’t have the physical or emotional ability to use the tools they do have. They often need someone who knows them well to step in, acknowledge their feelings, assist them in decreasing their distress and assist them with communicating in a calmer and safer way. Ignoring doesn’t do any of that.

Professionals and providers of services to individuals with disabilities, as well as caregivers, must begin to challenge the paradigm of assuming our first job is to “fix” the behavior of people who are distressed.  We have to let go of the overly reductive idea that when an individual “acts out” in a way that gains “attention” we must avoid “reinforcing the behavior” by not responding.  When we allow ourselves to live within that construct we are limiting our ability to teach new skills; we are taking all of the power from the individual and using it to deny them connection and co-regulation; we are removing their agency and replacing it with trauma. It is difficult to let go of the God like position of deciding how to fix and change another person and, instead, be present in their distress, help them achieve better regulation and help them grow into a place where they can better navigate their feelings and the ups and downs of being a human being.  But it is essential. 




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FC/RPM/S2C?

12/3/2023

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How to spot pseudoscientific practices of Facilitated Communication, Rapid Prompting Method and Spelling2Communicate in highly edited documercials:

1) The vocabulary used by the proponents of these systems and in the propaganda often differs from that used in the AAC field in that they like use “type”, “typer”, “spell”, “speller”, “board”, “letter board”, “stencil”, “keyboard” instead of AAC, AAC user/AAC device/system.  AAC users, of course, get to self-define and chose how they wish to be referred to, I am not talking about that, I am talking about the speaking people who are trying to sell these programs. 

2) There are never any long camera shots showing the individual typing, instead there are short edited bursts of filming, with the camera focused on the hands 

3) There aren’t full body shots showing the individual in the center of the frame communicating without someone touching them

4) The keyboards/letter boards/stencils/ipads are held aloft by someone other than the individual. They often move about as they are held in midair. Sometimes you can clearly see the board movement anticipating the next letter or the individuals hand/finger staying still as the board moves under it  (try drawing a box around them in editing software or dry erase marker to check)

5) The individual is never given any personal space/bodily autonomy when they are using their keyboard/letterboard/stencil/ipad

6) Someone is holding the individuals hand/arm/shoulder/shirt or other part of their body as they “spell” (or in one video some is holding the end of a stick and moving the child like a marionette)

7) The individual may not look at their target, even peripherally, while they touch it (or aim to touch it). It is actually next to impossible to hit a letter on a board held aloft if you don’t look (if an AAC system is still and static and the user is experienced at it they might be able “touch type” without looking but usually that isn’t the case in the propaganda videos). Try it. You can't ‘touch type” without looking on an unstable keyboard. 

8) The individual often has their wrist limp and their finger dangling, it is very difficult to type like this or they sort of repeatedly peck their arm/hand without much aiming, try it out on a still keyboard and one held aloft, it’s very hard.

9) The individual rarely, if ever, has had any literacy/grammar instruction. Usually they went from severe educational neglect to spelling and writing in full sentences immediately (note: some 6-14% of autistics are hyperlexic so this alone isn’t telling, but S2C and other programs insist all autistic don’t need quality literacy instruction, this is a blatant lie, look into Science of Reading), there maybe excessively poetic language even for simple yes/no questions.

10) The “facilitator” doesn’t confirm letter by letter or word by word or even at all, as is recommended, they also don’t need to write down what letters are touched to understand, often despite the “speller” not using capitalization, using spaces or punctuation. Try it, it is really hard to decode something letter by letter in this way, especially quickly. (On a personal note my sister had a brain injury later in life and used an AAC book. When she spelled she would get so frustrated with how hard I found it to decode as she pointed that she would spell dyslexic backwards - I didn’t know was what she was doing for years!)

Some other serious concerns about autonomy include that facilitators/helpers ignoring multi-modal communication of wanting a break, to move, to stop etc. Often times, especially in RPM and S2C, ABA based compliance training techniques are used such as restricting movement, timers to force sitting while they are “spelling”, and other means to force the individual to use only condoned means of “communicating”.  Rarely do you see the individual demsontrating high regard of or ownership of their board/ipad. 

Photos taken from:

📸 Watch this video on Facebook https://www.facebook.com/share/v/pZ2E4xxwdFgHKCyw/?mibextid=rOHFeQ
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Revisiting the Adapted AAC Prompt Hierarchy:

11/10/2023

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Seven Years Later
Seven years ago I wrote about and created a new prompt hierarchy, designed for use with those who have apraxia.  Soon after Shelane Neilsen collaborated with me to create a visually more appealing Adapted Prompt Hierarchy. Quickly translations began appearing, at first with or Shelane's my consultation and, eventually, without it.  Eventually new versions appeared, usually copying my premise, and often times my exact language, sometimes with credit or consultation and most times not.  Sometimes these were sold by others.  They are making money off of work I have deliberately only offered for free.  Work I've only offered for free because it is so vital to what we do as AAC caregivers and practitioners. 

The Adapted Prompt Hierarchy came into being because of my experiences observing a traditional, ABA based hierarchy used with AAC learners.  Those prompt hierarchies always started with an adult who had something specific that they thought the user should say.  It was assumed the adult was always correct in their choice of what should be said and no other response was acceptable.  As a means to that end the prompts had the end goal of encouraging, and if that didn't work, forcing the individual to say what they adult wanted them to say.  Such procedures ignored the humanity and human rights of the AAC user to be in charge of if, when and what they communicate.  These procedures, especially physical prompting, could create learned helplessness.  Furthermore, AAC users are taught that the AAC system doesn't belong to them, it is merely a tool that someone else is in charge of, that they can be pressured or forced to use to say anything someone else wants, regardless of their desires.  This may make the AAC system aversive, which will limit the success of it's use.
The major ways this Adapted Prompt Hierarchy for AAC is different from other prompt or cue hierarchies are the following:
  • Aided Language Input (aka Aided Language Stimulation, Partner Augmented Input, modeling) is the umbrella under which all other intervention occurs.  It is a setting event for learning AAC. 
  • This model focuses on maintaining the humanity and autonomy of AAC users.  It safeguards AAC and communication as a choice.  
  • It suggests use of a pause of a minute or more.  Many prompt hierarchies suggest mere seconds.  This is often not enough time for AAC users to process language, formulate a response and use their AAC system to say that response.  The amount of wait time should be based on the individual AAC user.  Data can be collected to determine the average wait time needed for many different types of responses to determine how long to wait. 
  • This prompt hierarchy completely eliminates hands on prompting - including partial, full physical, hand over hand and hand under hand.  No one should be touching an AAC user or their system while they are communicating.  Ever. There is a myth that hand under hand prompting is acceptable if the user consents and can withdrawn at anytime.  However, any physical prompting sends the message that the adult knows better than the child what to say and teaches the child to accept being physically manipulated to communicate.  This is what we want to avoid.  There may be some exception for Deafblind AAC users, but even then physical prompting is discouraged. 
  • Other prompt hierarchies focus on getting an AAC user to say what the adult wants them to say, but this prompt hierarchy focuses on helping the AAC user figure out what THEY want to say. 

​As well as their being a plethora of research supporting Aided Language Input as a primary intervention in AAC and a recommended best practice, there is also research indicating passive observation is better than using physical prompting in individuals with intellectual or developmental disabilities. 

Additionally, seven years ago I had begun to work with a number of individuals who had been assaulted at school.  I had to wonder how being forced to communicate specific messages using hands on prompting (be it hand over hand or hand under hand)  created an easier target for abuse. Especial since these individuals were also subject to hand over hand prompting for other tasks, physical restraints and they were given rewards for allowing others to do things they found invasive or for allowing their bodies to be manipulated.  Certainly, hands on prompting, compliance based education and therapies and the inherent ableism in forcing a disabled person to do undesired activities was grooming disabled children and adults into being easier targets for abuse. 

In my original post, I went into great detail about the studies that show that individuals with disabilities are abuse at exponential rates compared to non-disabled individuals.  The statistics have not gotten any better in seven years:
  • Adults with developmental disabilities are at risk of being physically or sexually assaulted at rates four to ten times greater than other adults. (From Sobsey, Dick (1994). Violence and Abuse in the Lives of People with Disabilities The End of Silent Acceptance? Maryland: Paul H. Brookes Publishing Company.)
  • Sixty-eight (68) to eighty-three (83) percent of women with developmental disabilities will be sexually assaulted in their lifetime, which represents a 50 percent higher rate than the rest of the population (Pease & Franz 1994, Warick, Jason (1997).
  • According to one study in 2000, approximately five (5) million crimes were committed against persons with developmental disabilities in comparison to 1.4 million child abuse cases and one (1) million elder abuse cases. (From Joan Petersilia, Ph.D., When Justice Sleeps: Violence and Abuse Against the Developmentally Disabled.)
  • More than ninety percent (90%) of people (both male and female) with developmental disabilities will experience sexual abuse at some point in their lives. Forty-nine percent (49%) will experience ten or more abuse incidents. (Valenti-Hein, D. & Schwartz, L. (1995). The Sexual Abuse Interview for Those with Developmental Disabilities. James Stanfield Company. Santa Barbara: California)
        (https://shorturl.at/rwyV7)

Certainly, when the hierarchy was first shared seven years ago there was a backlash.  Some caregivers, but mainly paraprofessionals and professionals, could not conceive of a world where what an AAC user communicated was up to the AAC user.  Talking about abuse against those with complex communication needs and developmental or intellectual disabilities caused great upset.  There was a lot of push back about the rates of abuse reported being untrue, despite experts saying they were actually low.  Many practitioners doubled down on using hands on prompting. Slowly, but certainly some practitioners have begun to see the risk in using physical prompting and compliance based programming.  Most and more parents and other stakeholders are demanding their child's interventions NOT be based in compliance training and instead support neurodiversity.  Using the Adapted Prompt Hierarchy supports neurodiversity in many ways.  It supports communication autonomy by allowing the child to decide if, when and how they communicate.  It supports physical autonomy by avoiding any hands on prompting.  It allows for extended wait times of a minute or more to allow neurodiverse brains time to process what is happening and form a response.  

The Adapted Prompt Hierarchy for AAC is designed to create autonomous communicators who make their own choices surrounding what they wish to communicate, while offering them supports in choosing what to say,  

Please contact us if you wish to translate this into another language.  We will be happy to assist.

​Download file here.
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How Many Buttons?

11/4/2023

1 Comment

 
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One of the frequent things we see in the field of AAC is a struggle to determine how many buttons per page to start with on a new AAC system.  Though there is a myth that one should start small and have a very limited system at first this is no longer best practice, best practice is to consider the users ability to  "Perceive and Access" the buttons on the system.

Perceive and Access
Start with as many buttons, the maximum, the user can perceive and access (often times called "see and touch", a brilliant approach from the folks at AssistiveWare, but perceive and access is more accurate as it includes visual needs, fine and gross motor needs, memory and working memory needs, alternative access and more).

This means determining the skills needed to perceive the buttons including vision and visual scanning for most users, but also memory and working memory (especially for those using indirect selection like switches) and hearing for those using auditory supports for access.  

As perception issues are considered, access is also considered.  How will the individual make selections?  Will they use direct selection like their finger, a stylus, a joy stick, eye gaze or head tracking? Will they use switches?  What supports will be used for the selection method? Do they need the button they are about to select to enlarge or change color? Do they need an auditory preview or auditory scanning? If switch scanning will be used how many options are they able to recall during a scan?  Can they do row/column or group/item scanning? Are they able to use their cognition and executive function to make selections while they hold their whole message in their head? Overall, how many buttons per page can they access - remembering that less is not necessarily easier! Less buttons per page means more navigation.  More navigation increases the need for executive function skills, working memory, attention span and patience of both the user and communication partner.

(One place to start is watching the individual use other technology or do other activities.  Can they navigate YouTube? Find the X to close the video? Visually scan over selections and make a choice? Yes? Then chances are you can go pretty small with the buttons, which means more buttons per page.)

When you base the size of the system on what they can perceive and access you meet visual and fine motor needs because you chose based on criteria that includes what can be seen and what can be selected.  Once all these factors have been considered and tried a decision should be made to use as many buttons as they can perceive and access WITHOUT considering if they know the words and symbols on the buttons, if they can combine words or anything else beyond perception and access.  They will learn the symbols, words and the system as a whole because we will teach it to them.

​Like all children the AAC user must be exposed to exponentially more words than they can currently "say" as they learn to communicate.  In the case of AAC this is done using aided language input (aka modeling). They need words to prove they can use words.  This is important to understand as the old belief was that they have to prove they can use words to get more words added to their communication system.  That myth's time has passed.  You also need words to model. You can’t model what’s not there! We might hide/mask words, use "progressive language" features or similar during learning activities (though I don't), so that we can have a smaller number of words during the activity, but then return the system to full access. Using these features ensures the buttons stay in the same location as buttons per page changes and a new motor plan doesn't have to be learned for each increase. 


There are some other things to think about when you decide to give a user a limited number of buttons per page:
  • you limit the language they can use and since language is about connection there is less to use to connect with others which minimizes motivation
  • you are attempting to mind read to know what they might need and since no one can mind read you will be wrong
  • you make assumptions about their ability and, worse, others seeing the limited vocabulary start to perceive the user as unable to use more language and doubt their cognitive abilities, stigmatizing them
  • you cause them to need to learn a new motor plan everytime you increase the grid size, limiting progress
  • you make words transactional as the student must earn the right to have words
  • “proving ability” becomes next to impossible since you need words to prove you can use words
  • you are allowing the needs of the caregivers/stakeholders to outweigh the needs of the user as often concerns about "too many buttons" are based on the erroneous idea that if the stakeholder is overwhelmed then the user must be

​Remember, when you choose how many words someone "deserves" you are choosing the size of their world.  Choose carefully!
See also:
AAC through a Language Lens
https://blog.mycoughdrop.com/aac-through-a-language-lens/
​
Choosing a Grid Size by AssistiveWare
https://www.assistiveware.com/learn-aac/choosing-a-grid-size
Grid Sizes by Liberator AU
https://shorturl.at/eoFW9   
Prepare for AAC Use by Fluent AAC
https://www.fluentaac.com/prepare-for-aac-use 
What is beginning AAC? by Jane Farrell 
​https://www.janefarrall.com/what-is-beginning-aac/
1 Comment

FrankenSystems

10/22/2023

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FrankenSystem is the name for an AAC system which has been highly edited or customized by a stakeholder (caregiver, teacher, ABA practitioner, therapist, etc) without regard for a set of internal rules, visual cues and standards that exist underlying robust AAC systems. 

​Such systems tend to lack consistency between buttons, pages and sections. The visual cues (color coding, fonts, font styles, button shapes) built into most robust systems are ignored.  There is usually a mix of various symbol sets, clip art and photos without a logical basis for when/what purpose they are used. There may be an over reliance on photos based in the debunked idea of a “representational hierarchy” in AAC. These photos can lead to over or under generalization and use of the system as a photo album instead of communication system. Images used may be blurry, difficult to distinguish from the background or lack clear meaning. 

A FrankenSystem will use the same symbol on different buttons, on different pages, to speak different messages so that the user doesn’t understand what will happen when they activate the button. It may use navigational icons, such as next page, go back or home, on communication buttons and not just navigation buttons. 

FrankenSystems may have a mix of colors, buttons sizes and images which are unpleasant to look at, at best. They are often aesthetically displeasing, and, not to put to fine a point on it, ugly. 

​Please note that AAC users, especially adult AAC users, who customize their own system may do so anyway they wish. FrankenSystems are imposed on AAC users, not created by AAC users for themselves

Many people may not understand the work that went into creating the leading AAC systems (like PODD, WordPower, Unity, LAMP WfL, Proloquo, Proloquo2Go, Avaz, etc). Linguists, SLPs, educators, AAC users and stakeholders and many others spend years creating these systems. They typically have very specific and meaningful reasons for why things work they way they work. Most systems use the latest research in their designs to ensure the systems are based in what works best.

As people who unwittingly create these FrankenSystems often have no exposure to the design and rationales lying behind the vocabulary set up they don’t realize what they are doing when they over customize the program.  AAC System creators/designers and sellers MUST do a better job informing their customers how and why their systems are designed the way they are. 

​Beyond that, these individuals who do this over customization are just working too hard! They would like be better off if they did basic customization of people, places, preferred items/things, personal information, and relevant slang and then watched a movie, had a glass of wine or otherwise rested so they can use their energy on the things that help AAC users become more competent - like aided language input (modeling) and literacy instruction. 

A FrankenSystem is often:
  • created by very well meaning but inexperienced person(s)

  • created by someone who desperately wants to DO something to help, but who does not fully understand what they are doing 

  • created by a person who does not understand the system they are adapting

  • created by a person who thinks the vocabulary system included is “too” something (too hard, too many words, too hard to see)

  • attempts to replace core and content words with phrases and full sentences without regard for when and why it is appropriate to do this

  • attempts to turn a robust communication system into a stimulus response machine or into a means of requesting only, with an over abundance of nouns (“noun town”)

  • may be created over years by multiple people who do not communicate with each other (too many cooks in the kitchen)​
We should avoid creating and implementing a FrankenSystem because:
  • it disrupts a consistent system that will become more useful and important as the AAC users skills grow
 
  • it is often designed to make the AAC user appear very fluent before they have mastered the skills and at the same time they limit the ability to gain those skills
 
  • the AAC user will have difficulty knowing what a button will do when it is activated
 
  • the motor plan and ability to rely on motor memory is often disrupted

  • the color coding and other cues to navigate the system are often inconsistent making it hard to use 
 
  • once the system it is based on becomes out of date or the device/app is taken off the market the user will be without the system they know - many adults who use AAC end up in this position!
 
  • it is unpleasant to look at, especially for the long term

    ​How to avoid creating and implementing a FrankenSystem:
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  • always search for words before you add them, make sure you aren’t adding content that is already there
 
  • before you make serious changes or program more than a word or two have conversations with knowledge people and other stakeholders including the user
 
  • keep a shared document or notebook with all stakeholders that has an explanation of the system and its internal rules, design, visual cues and features, so that any changes being made can match the system 


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 What to do if a user has a FrankenSytem:
  • determine if the system meets their needs and if stakeholders are satisfied with the system. If it is used well and everyone is satisfied you may not need to make any changes or may seek to move the FrankenSystem closer to following the standards of the robust system it is based on (if it is based on one), by editing the system
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  • consider offering and modeling the original robust vocabulary while still having the FrankenSystem available . This can be accomplished in many systems but having a button in each vocabulary to switch user or profile so the different vocabularies and easily be toggled back and forth (much like we do for bilingual AAC users). Over time the user will likely move more and more towards the robust system, but return to the customized system when needed. 

  • train the AAC user and stakeholders on the design, internal rules, visual cues and rationale of the original robust app to aide in their understanding of why it would be a better choice, use visual helpers and quick start guides as support for them
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Presume Potential

6/24/2023

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Something that happens to me all the time when I talk about what my students can do is people assume I only accept the “high functioning” kids. They ask questions about how what I am teaching is "advanced" and their students would not be able to do it. It infuriates me!

Well folks my students couldn't do it before either! My students didn’t have these skills. I taught them. Now they do. That is how teaching works.  

I take any student who shows up. The only child I actually turned down for my home school academy I turned down because we would not have been challenging enough. I have never, ever turned down a child because I didn't think they could learn! When we say "presume potential" this is what it means. No matter where you perceive a child to be "functioning" you KNOW that they are capable of learning, of progressing. And as a teacher you do EVERYTHING possible to both meet them where they are AND raise the bar gradually. If you are setting the bar so low they could trip over it I am not even sure you can call yourself a teacher! 

The truth is I am a last resort. If a kid is “easy” or “high functioning” they aren’t going to end up working with me because the school/hospital/etc will be fine for them. It's the kids who are deemed "hard", "challenging", "difficult" and (the one label I hate the most) "low" who end up with a private provider like me, usually after years of educational neglect. And that educational neglect comes from low expectations and assumptions of inability to learn. This oldie, but goodie graphic from Practical AAC holds true. Change your perceptions of the individual and you change everything!

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"Spellers" Propaganda

5/7/2023

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There is a new dangerous, propaganda movie about a cousin to the debunked and dangerous Facilitated Communication method going around. It’s called “Spellers” and is based on Spelling2Communicate which is essentially the same thing as Rapid Prompting Method. 

Facilitated Communication is holding the hand, arm or another part of the body of a non-speaking person and “helping” them communicate by pointing to letters. In Rapid Prompting Method (RPM) and Spelling2Communicate (S2C) a helper holds the letter board instead of the body of the non-speaking person. Evidence shows, overwhelmingly, that neither of these methods is safe because inevitably the person doing the holding, accidentally or on purpose, becomes the communicator. This has been proven in study after study since the 1980s. It is set, peer reviewed and accepted science. 

Knowing this, plus our knowledge about interrupting bodily and communication autonomy and it’s impact on increasing vulnerability to abuse means we should never, ever touch a non-speaking person or their communication system while they are communicating. Ever. (There are very rare exceptions for Deafblind people.) Repeat NEVER TOUCH AN AAC USER OR THEIR AAC SYSTEM WHILE THEY ARE COMMUNICATING. There is even a study showing passive observation leads to better results than physical prompts! So hands off!

These methods are associated with horrific stories of false abuse allegations ripping apart families and actual abuse when non-speaking people are believed to be consenting to sexual activity using these methods, such as published in a story in Slate Magazine. (To be clear non-speaking people can and do consent to and have fulfilling sexual lives. However, if consent is given using these methods it must be questioned, for safety sake.) 

All of these methods have been condemned by major groups like ASHA, ISSAC and others. 

The only “study” Spelling2Communicate proponents offer is an incredibly flawed study that used head mounted eye gaze tracking to supposedly prove spellers look at what they touch before touching it. This study had no control group. We do not know what someone typing without someone holding up their spelling board and moving it (be it by accident or on purpose) looks like on eye tracking. If we don’t know what confirmed literate individuals in a control group look at the study has no basis. How can we possibly tell if someone is looking first before touching without a control? Beyond that flaw, the study ignores the evolutionary imperative for the human eye to look at movement and relative movement. Such flaws make the study useless. 

Let me be very clear. Non-speaking people have an absolute human right to communication. All non-speaking people should be assumed to be capable learning to understand and communicate AND given the interventions and tools they need. The presumption of potential to read, write and communicate is essential. As a field we must start there. But we cannot end there. We cannot assume that without instruction in reading, writing and spelling students will magically communicate through hands on assistance or manipulation of their communication board. These debunked programs and methods stem directly from our failure to properly understand and intervene with children and adults whom are non-speaking. Our mistakes and utter failures caused this mess. If we eliminated educational neglect of non-speaking students and insisted every single child who needs AAC gets AAC, along with intensive and consistent, science based interventions to learn to read, write and communicate we wouldn’t be here. 

But here we are. I grieve for the people being subjected to these methods which are unlikely to work though proponents use the rare success story to convince desperate parents and caregivers to commit to bogus methodologies. I also grieve for all the kids who aren’t being given communication and literacy intervention and instruction because they are trapped in the tyranny of low expectations that create the educational neglect that is rampant. 

I wish someone would make a movie about some of the many, many AAC users who became AAC users through scientific based interventions. The power of communication is undeniable. But, we have better ways than these questionable at best methods. We need to spread the word and the science to all so that every voice is a heard voice.

Links
Stop FC and RPM
Facilitated Communication. Org
ASHA Statement on RPM and S2C
ISAAC Statement on FC, RPM, S2C


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    Kate Ahern, M.S.Ed.

    Accessible education teacher focusing on students who communicate using AAC.  

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