#AACreadtoMe Contest

The AAC through Motivate, Model and Move Out of the Way Facebook Group is having Summer Reading Contest. The goal of the contest is two fold: to have professionals and caregivers practice modeling and to create a free, online library of videos of storybooks being read aloud with AAC modeling happening during the reading. Please note: there doesn’t need to be AAC users present during the video - although it is not prohibited. The contest begins July 1, 2018 and closes August 1, 2018.

The hope is that we will see videos posted of many robust AAC systems both electronic and non-electronic and many different and wonderful kids books. AAC related companies have been asked to donate some prizes (still looking for more! Message me if you have something to donate!). One prize will be given for the best overall video, and two will be randomly selected. Other prizes may be added!

Here are some suggestions for your video;

Remember

• There are a few ways to model while reading, the simplest is to model the action of the reader and comments, such as, turn the page, look, cool

• This contest is looking for the modeling of core words (or common phrases) during the reading. For example, Marvin K. Mooney will YOU please GO NOW! (Modeled words in caps.)

• Your video should be useful for the AAC user(s) in your life. This contest is intended to be beneficial to the participant in that way. So model the language level or ability needed, it will be assumed whatever language level you model is appropriate for your situation.

• We are not looking for videos which show the symbols for the words in isolation, we are looking for modeling that allows the watcher to see how to locate the targeted words - so please do NOT just read a book with symbols pasted in or use video editing to just add the symbols to the screen while you are reading, also do not use a board or page created just for that book (this includes downloaded or commercially available pages or boards just for that book). The goal is to teach kids to use the words they have already.

• If at all possible use an AAC system which is not totally unique to your user. For our purposes it would be better to use a common core word display than an electronic system that has been made from scratch or is so customized it no longer operates like it was originally designed. (An exception is if many people are using the same highly customized system - as sometimes happens in small, disability specific communities). However, if the choice is a unique and very highly customized system or no video at all, then use the customized system!

Selecting a Book

• Look for a picture book with clear language at the language ability you wish to model

• Aim for a book which length won’t exceed the potential attention span of the target /AAC user(s)/audience

• Look for a theme that works with your curriculum, theme unit, or has targeted core words and other variables relevant to your setting

• Read the book through, make sure you are comfortable with the story and that you like it, if you don’t enjoy reading it listeners may not enjoy hearing it!

Getting read to video

• Pre-read the book

• Select target words for each page. These are the words you will model

• Consider putting those words on a post it or writing in pencil on each page

• Decide on how you will end - will you offer your opinion and model it? Will you model a question to the audience?

• Rehearse - read it and model the targeted words, learn where they are

• Film the reading of the book, be sure to state the full title and author, show the pictures to the camera and model as you go

• Upload to YouTube and/or Facebook with the tag #AACreadtoMe and the name of the AAC system you will be using to model (such as Avaz, Proloquo2Go, LAMP, Unity 45, CoughDrop with Core Word 60, TouchChat with WordPower 42, PODD book 20, etc)

Advanced Options

• Pick a rhyming book

• Use fun/dramatic voices

• Use props or puppets

• Wear a costume

• Decorate the story reading area

• Have a live audience

  
  

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Taking a Stand Against the FC Come Back

Facilitated Communication, recently rebranded as Supported Typing, is an unethical and means physically supporting, oftentimes unknowingly physically forcing, individuals with complex communication needs to communicate by pointing to letters on a piece of paper, board or keyboard. FC, as it is known, has been condemned by the American Academy of Child and Adolescent Psychiatry, American Academy of Pediatrics, American Psychological Association, American Association on Intellectual and Developmental Disabilities, American Speech and Hearing Association, International Society for Augmentative and Alternative Communication, The Association for Behavior Intervention International, The Federal Trade Commision, the entire Swedish public education system and many others.  See a list here: https://en.m.wikipedia.org/wiki/Facilitated_communication#Organizations_that_oppose_facilitated_communication

It can be correctly argued that FC has been fully debunked starting in the early 1990s and with over 50 more studies since which clearly and irrefutably shown many, and in some cases all, of the messages are actually written by the facilitator.  The scare research validating it is deeply flawed. It can also be correctly argued that FC is dangerous with false allegations of abuse sending families using FC into a tailspin with the legal system and, occasionally, leading to other facilitators feeling it is appropriate to accept consent for sexual activities from communications that facilitator is "facilitating". It should also be noted with abuse rates of those with complex disabilities up into the high nineties any practice which trains, expects or insists that a person with a disability allow another person to manipulate/touch their body, especially without their consent, is problematic and may be part of grooming these individuals to be abused.

Many proponents of FC argue that some FC users become independent. This is true, in a few notable cases, but there is no evidence these individuals would not have learned literacy and to communicate through other methods. Nor is there evidence that even a small percentage can of FC users find similar success. Without such success FC creates a very small world for the the vast majority of people using FC to communicate. A world limited by their access to a facilitator where every word will be doubted because of the methodology being used. This is a shame since we have so many other wonderful, valid and independent ways for those who need alternative ways of communication to create and share authentic messages.  It is also a shame since individuals who could be communicating freely are held hostage to the system of FC unless they are one of the few who becomes autonomous. 

Another important point, as educators, therapists, and doctors and is that FC does not align with best practices in communication, literacy, occupational therapy or education. No typical child would be taught to read by being physically made to touch letters on a board. No typical child would be expected to master language by being assisted to touch letters to spell without modeling of langauge or ongoing exposure to others using this method. No typical child would be expected to accept someone near them and touching them, nearly all the time. Why is it ok for children who cannot speak?

It isn't. FC is a highly problematic, debunked and unethical means of offering communication to someone who doesn't speak. We must demand all individuals with complex communication needs be given robust AAC systems without prerequisites, be exposed to thousands of hours of aided language input, be taught to read and write using the latest research in literacy instruction and be included in their communities.  We must, at the same time, stand up to the resurgence of FC, and its cousin RPM.  We must stand up despite the bullying and harassment FC supporters dump on those who stand for truly presuming competence and potential. For over ten years I have written this blog and never have I taken a public stand on this, fearfully of the harassment and accusations and believing ultimately science and respect would win out. 

Now I take a stand and I ask you to sigh this petition to ask New England College to cancel the FC training  on their Concord Campus and ask MGH and its Lurie Center to stop promoting this dangerous and unethical practice. 

How can you take a stand?

Sign this petition!

Email the president of Massachusetts General Hospital and ask him to stop the Lurie Center, part of his hospital, from promoting FC pslavin@partners.org

Email the president of New England College and ask her to cancel the upcoming FC training. president@nec.edu

UPDATE: The training  was held. The Lurie Center/MGH requested I remove that post, I refused. I heard later that the SLP who listed her Lurie connection on the advertising was let go from the center. 

More:

Watch the original Frontline expose: https://m.youtube.com/watch?v=CzCGux7qD1c 

Read this excellent article by Slate: http://www.slate.com/articles/health_and_science/medical_examiner/2015/11/facilitated_communication_pseudoscience_harms_people_with_disabilities.html 

See DLM on ways to teach individuals with CCN to communicate, read and write: http://dynamiclearningmaps.org/ 

Accessible Communication Bill of Rights

People who know me know that I talk about the AAC or Communication Bill of Rights all the time.  All. The. Time. 

I talk about it when training teachers, parents/caregivers, therapists and paraprofessionals. I teach directly about the AAC Bill of a Rights with my AAC using students.  I program specific messages about the AAC Bill of Rights onto my clients’ AAC Systems so they can self-advocate quickly when needed. I talk about it when I teach about AAC and behavior because often times “challenging behavior” is an indicator that the AAC Bill of a Rights is not being respected.  Years ago, I revised the AAC Bill of Rights into various common symbol sets used in the USA and colleagues followed suits in their own countries. 

There are currently two versions of the full text of the Communication Bill of Rights available, the 1992 version and the 2016 version.  Both have the basic and vital information.  I adore them both. They frame all I do in my work with individuals with complex communication needs. I honor and respect those that created both versions. Their work was and is visionary and incredibly impactful.  However, the truth is, both versions of the Communication Bill of Rights are largely inaccessible to lower level readers and some individuals with intellectual or cognitive disabilities. 

That is because the 1992 version of the Communication Bill of Rights measures at about a grade 9 Flesch-Kincaid Reading Level; the 2016 version, despite being designed to be clearer, measures at an 11th grade Flesch-Kincaid Reading Level. (Those measures are only reflective of the enumerated text of each document and were calculated on the Readability Formulas website.)

To some degree, both Bill of Rights, though especially the 2016 version, are inaccessible to the average American, and since it is reported that the average American reads at a grade 8-9 Level.  In fact, 1 in 5 Americans is reported to read at a fifth grade level and below.  This means that some caregivers, some direct care workers, some friends and family and some AAC users are not able to access the incredibly important ideas in the Communication Bill of Rights. Those who use AAC need all of those people to be able to read and understand their rights. 

The Communication Bill of Rights are also (both versions) inaccessible to same age peers in our elementary and middle school classrooms, peers who could can play a dramatic role in the lives of their friends who use AAC.  

Finally, there is the population of AAC users themselves.  It is well known that AAC users have in the past, and are still today, often educationally neglected.  They are often, if not nearly always, excluded from literacy instruction. If they do receive literacy instruction it is frequently sight word based or “functional/survival reading”. This means a large portion of AAC users cannot read the Communication Bill of Rights, which is written in the first person, because it is speaking from the view of the AAC user; the AAC user who probably can’t read it. (Which is our fault as a field and NOT a reflection of the AAC user’s ability to learn to read.) To bring the irony to its pinnacle the final right in the 2016 version is, “The right to have clear, meaningful, and culturally and linguistically appropriate communications.” (Emphasis mine.) 

To be fair, the Communication Bill of Rights wasn’t created for caregivers or direct care workers or children or AAC users. The updated version included information on how practitioners, specifically practitioners, could use the document to advocate for communication supports and services, promote inclusion and encourage broader community acceptance. Clearly the intended audience was practitioners. I can’t think of a better way for this practitioner to advocate for communication supports and services, promote inclusion and encourage broader community acceptance than to work towards a more accessible version of the Communication Bill of Rights.  

So let’s do it. Let’s make a clear and meaningful Communication Bill of Rights, an Accessible Communication Bill of Rights.  One that can be read by the average American, by the 1 in 5 Americans that read at or below a fifth grade level, by students from grade three and up.  Let’s add symbols to support understanding for those who need them. After all, it is October, AAC Awareness Month! What better way to create awareness than to make the Communication Bill of Rights more understandable to more people?

The following Accessible Communication Bill of Rights measures at a 3rd Grade Flesch-Kincaid Reading Level. 

I am a person with a communication disability. I communicate using a communication system or device. This is can be called my book, my talker or my AAC.  These are my rights:

1.  I have the right to my own friends and social life.

2. I have the right to ask for what I want, who I want or where I want to go. 

3. I ALWAYS have the right to say, “no”!

4. I have the right to say what I feel. 

5. I have the right to make my own, real, choices. 

6. I have the right to say what I think, how I want to say it. 

7. I have the right to ask for, get and give information about myself, my life, my schedule or anything that changes. 

8. I have the right to know about the people in my life and everything happening to me. 

9. I have the right to have EVERYTHING I need to be able to communicate and to be taught how to communicate.

10. I have the right to be heard and answered, even if I can’t have what I want. 

11. I have the right to have my communication system (and other tools), to have them working and to be with people who know how to set up, use and fix my communication system.

12. I have the right to be part of my community, in the way that works best for me, and for my communication to be as important as everyone else’s. 

13. I have the right to be treated with respect. 

14. I have the right to be talked with and not about.  

15. I have the right to be talked with in a way I understand. 

Accessible Communication Bill of Rights SymbolStix 

Accessible Communication Bill of Rights with Picture Communication Symbols

Note: I reworded each of the 15 points myself, attempting to use clear, simple and understandable language. I revised the sentence lengths numerous times as they impact readability, but many of the rights have multiple important points. I used the website Rewordify to check for difficult to understand words and phrases and remove them from the text. If you wish to test the original text of the Communication Bill of Rights Rewordify is a way to locate the difficult words and phrases, make vocabulary lists to pre-teach and make other modifications. 

Switch Skills Resources

The world of assistive technology has come a long way since this blog started!  More and more often our students have the option for direct selection, the fastest way, on a communication system.  For many users options such as integrated conductive touch screens, head trackers, adapted joysticks and trackballs, and especially eye gaze tracking, have made switches less necessary in our field.

Still, switches have a place in our assistive technology tool kit.  For learners with access needs that preclude direct selection through any possible means our next option is usually switch access.  We tend to start with a single switch for cause and effect, yet few of our learners really need to learn cause and effect.  If the child drops something, catches her head under her headrest, or does anything else for the entertainment of it or to seek attention the she already understands cause and effect.  A few runs using a switch to turn on preferred music or a fun toy and you are ready to move on to other switch purposes.

At this point it is vital to begin with the end in mind.  What will the child ultimately use switches for?  If it is for communication, the most important thing we teach, then forego any extraneous steps when you look at a switch progression or heirarchy of skills.  Your student doesn't need to learn to press and hold or turn on and turn off if ultimately you are seeking the student pressing and releasing a switch as part of a switch scan.  Don't let these extra skills slow down communication access!  You can develop them later, or program the communication system to eliminate their need.

It will be important to decide if your student will be using a one or two switch scan, also called an automatic scan or a step scan.  In general an automatic or single switch scan requires to student to look and/or listen for the item needed and activate the switch with accurate timing for that item.  A step scan or two switch scan requires the learner to use one switch as a mover and one as a chooser.  With the mover switch the child progresses the scan and with the chooser he chooses the item he wants.  In essence this decision is about is the child or will the child be more accurate if asked to time an activation of a single switch or if asked to coordinate the movements of two switches without worries about timing.  It is important to work with your team on switch placement, type of switch and how switch use will be taught - with attention to keeping the end in mind.  Here are some resources that can be used:

Articles about Switch Use

• Facilitating a Two Switch Scan (OCALI)
• SteppingStones to Two Switch Scanning by Linda Burkhart  
• Switch Progression Roadmap

Switch Use On Various Platforms

• Switch Use on iOS Devices by Assistiveware 
• Switch Use on Android 
• Switch Accessible Apps on iOS

Paid Software, Subscriptions and Apps for Teaching Switch Use

• Attainment (Windows, iOS)
• Judy Lynn Software (iOS, Android, Kindle, Windows; 1 and 2 switch options)
• Switch Trainer Pro (iOS)
• Switch in Time (Mac)
• HelpKidzLearn (online subscription works on all browsers allowing Flash (including Puffin Browser on iPad, individual iOS and Android apps) 
• Shiny Learning (subscription, downloads for Windows, iOS Apps) 
• Ginger Tiger (subscription for switch games and early learning)
• Marblesoft (Windows and some Mac based software, some iOS apps) 
• Zyrobotics (switch educational games, iOS and Google Play)
• List of switch accessible apps on iOS 
• Another list of switch accessible app on iOS

Free Switch Activities Online or Download (Cause and Effect unless otherwise noted)

• Priory Woods Videos  
• Priory Woods Videos Revamped
• Shiny Learning Free Section
• Dice (put cursor over "roll" and set switch to left mouse click)
• SENICT Software Members Area (currently free, may change) 
• SENSwitcher (download, very early cause and effect)
• Special Bites Freebies and Special Bites Free Online Games
• Papunet Games (select the image of the switch from the side tool bar to only be shown switch accessible games, timing and other more advanced switch skills) 
• Tarheel Reader Easy Adapted Books
• Tarheel Game Play Adapted Videos (beginning two switch scanning)
• Tarheel Typer
• Doorway Online (Includes switch accessible elementary level activities)

Create Your Own Switch Scanning Activities and use Sharing Sites

• Boardmaker Online
• Choose it Maker 3 Online 
• Clicker 7

Switch and Switch Interface Vendors

• Ablenet Switches and Interfaces  
• Adaptivation 
• ASL Mechanical Switches, Electronic Switches  and Interfaces
  
• Attainment 
• Compusult
• Crick 
• Don Johnston 
• Enablemart (highest prices, but sometimes school district preferred)  
• Enabling Devices Switches and Interfaces
• Eneso
• Inclusive TLC 
• Key Technologies
• Orin
• Zygo Switches and Interfaces 

When "Functional Skills" Aren't

In special education for children and young adults with significant disabilities we often assume that functional skills is our most important goal.  Yet, we often don't spend a whole lot of time thinking about what functional means or which skills are actually functional for our learners. This is the dictionary definition of functional:

func·tion·al

ˈfəNG(k)SH(ə)n(ə)l/

adjective

adjective: functional

1. 1.

   of or having a special activity, purpose, or task; relating to the way in which something works or operates.

   "there are important functional differences between left and right brain"

   • (of a disease) affecting the operation, rather than the structure, of an organ.

     "functional diarrhea"
   • (of a mental illness) having no discernible organic cause.

     "functional psychosis"
2. 2.

   designed to be practical and useful, rather than attractive.

   "she had assumed the apartment would be functional and simple"

   synonyms:

   practical, useful, utilitarian, utility, workaday, serviceable; More minimalist, plain, simple, basic, modest, unadorned, unostentatious, no-frills, without frills; impersonal, characterless, soulless, institutional, clinical "a small functional kitchen"

3. 3.

   working or operating.

   "the museum will be fully functional from the opening of the festival"

   synonyms:

   working, in working order, functioning, in service, in use; More going, running, operative, operating, in operation, in commission, in action; informalup and running "the machine is now fully functional"

4. 4.

   Mathematics

   relating to a variable quantity whose value depends on one or more other variables

   
   

In this definition, the part that applies to functional skills for our learners is "2. designed to be practical or useful." Functional skills should be practical and useful.  They should be skills our students will use over the course of their education and their lives. Often times these functional skills are futher broken down into activities of daily living/domestic skills, social skills, community skills, and self-determination.  Perhaps the best reference for functional skills I've ever used is the Syracuse Community Reference Curriculum. If you are looking for a good source for functional curriculum is is one place to turn.  Yet, it should never replace access to the general education curriculum.

Ironically, self-determination is often under emphasized in some functional skills curriculums.  Some such curriculums actually teach students skills that increase their likelihood to be abused or mistreated in addition to ignoring self-determination, for exaple curriculums that teach "accepting no" or "tolerating distress".  If a functional skills increases the likelihood of abuse or even just unhappiness as an adult it isn't actually functional.

When we are working with children who have developmental or intellectual disabilities but no additional physical or sensory needs it is easier to assess that child and design an educational program to teach skills which are practical and useful in addition to the general education curriculum.  This become more challenging when we are working with children with complex physical and/or sensory needs and/or complex communication needs.  Those children are much more difficult to assess and it is easy to fall into the trap of believing that just because a child cannot be assessed they are not capable of learning and progressing in the general education curriculum.  Over and over we hear stories these days of such children being underestimated and denied an education.  We need to ask ourselves, "if this student writes a book someday, what chapter do I want to be in?"

These students with complex bodies and communication needs may still need to be taught some practical and useful skills.  However, parts of the curriculum typically considered practical and useful/functional, such as hand washing, setting a table, or dressing cease to be practical and useful for some of these students.  Especially if our first response to physical and sensory challenges is turning to hand over hand methodology.  This is because some of our most complex students cannot physically do these tasks independently and we don't think about changing the activity instead of stepping in and forcing the child to participate physically.  It is, of course vital that these students be able to participate as fully as possible in these activities or alternatives to these activities.  A student who cannot wash his own hands need to be able to know when to ask to have his hands washed, ask to have his hands washed and participate as much as is needed.  He also needs to know to be sure those who care for him wash their hands and be able to request they do so.  A student who cannot physically set a table still needs to understand a table setting and know how to ask for table items they might need.  A child who cannot physically dress herself needs to be able to notice when she needs to change her clothes, choose clothes, and direct someone to find her clothes and assist her in dressing.  We need to analyze what would make each activity practical and useful for the child and then teach those skills.  However, none of these practical and useful skills and adaptations eliminates the needs for access to the general curriculum.

Some questions to ask ourselves about functional skills:
1) Are we teaching "functional skills" because we have never considered teaching the general education curriculum to this student?  For 99% of children in our schools the general education is functional.  Learning to read, write, do mathematics, learn from what we read and understand our history, society and world around us is functional.  These skills will allow typical children to understand and participate in their own lives.  Learning these skills is also functional for our learners with very significant disabilities.  The importance of what is taught doesn't disappear because our learners have complex needs.  Learning about Einstein means the child, typical or disabled, has a shared understanding of a scientist and political figure.  It means a child can understand a reference to Einstein such as, "It doesn't take an Einstein."  Learning the general education curriculum gives the child a schema to understanding.  In terms of neurology learning complex ideas such as those found in the general education curriculum  create news neuropathways which can then be reused and strengthened.  It gives the child a social currency that matches typical peers.  Have we really considered teaching general education content to our kids?  This is an area where those of us in the field of education for children with severe or multiple disabilities should take our cues from teachers of the blind and visually impaired.  Such teachers do not see a functional skills curriculum as a replacement for an academic curriculum, they see it as an extension of the general educational curriculum.  They call this the Expanded Core Curriculum. 

2)  Are we teaching literacy, the ultimate "functional skill"?  We use literacy skills all day everyday.  We wake up, check our phones for texts and the news - reading those things.  We read the buttons on the remote, the coffee maker and go through our morning routines.  We write a note to partner or child.  We read the messages on signs on the way to work.  Not just the road signs, but all the signs.  Here in Massachusetts the latest LED road sign messages have been "Use your blinkah!"  Even if you aren't the driver that's fun.  Maybe you see a sign for sale on something you love, or a potluck dinner or an upcoming civil event - my town just had a Yankee Doodle Parade.  How can our kids beg mom to go to the parade if they can't read the sign about it? Once we get to work we might read a bulletin board.  We might check our email.  And we aren't even at 9 am yet! Nothing is more functional, nothing is more of a life skill, than literacy.  By this I do not mean community signs and environmental print.  That isn't literacy.  Literacy is the ability to encode and decode words.  If you can encode and decode words you can read community signs and environmental print, these skills are gained through literacy.  Literacy is also a civil rights issue.  It always has been.  One of the ways one group of people exerts oppressive power on another group is to bar the teaching of literacy.  In the case of our students it is more a lack of expectation for our students, a lack of knowledge on now to do it and, to some degree, neglect.  I was tempted to say benign neglect, but it isn't benign.  It is malignant to not be taught literacy.  It is disenfranchising.  If all children except those with disabilities are taught how to read that is discrimination.  Maybe some of our kids will age out of school at 21 and they won't know how to read, but it should never be because we didn't try teach them every single day they were at school!  

• Center for Disability and Literacy Studies 
• Project Core

 4)  Is this student capable of physically doing this "functional" task independently? If not, is working on an unattainable skill the best use of the time this student should be spending time learning?  Is it practical and useful for the child to spend time working on something they will not physically accomplish?  For example, if you have a student who is physically not able to hang up her coat because of her physical challenges should a portion of each day be spend forcing the child to hang up her coat via hand over hand methodologies.  Would her time be better spent working on some of the other skills that are typically being used during arrival or coming in from recess?  Perhaps she could be focusing on socializing with peers during the transition.  Perhaps her time would be better spent learning to direct someone else to hang her coat and put away her bag or take out her notebook.  

5) How does this functional activity teach communication skills?  Communication is the most vital skill we teach to children with multiple disabilities and complex communication needs.  It is possible to incorporate true, child generated communication into every single activity we do in schools, from functional skills to the general education curriculum.  True, child generated communication is not activating a voice output switch with a pre-recorded message that the child had no part in creating. A fact of communication is that your partner doesn't know what you are going to say!  Switches can't do this, in fact sometimes when we use voice output switches it is sometimes the child who doesn't know what she is going to say!  That is so backwards! Every student should have access to a robust communication system.  Communication partners should be using those systems to speak to the child every time they speak to the child.  We should be targeting vocabulary and communication skills at one step beyond what the child can currently do.  Making every activity a communication activity is a quick way to make a curriculum functional.

#seemeseemyaac challenge video

This past week in the Facebook group AAC through Motivate, Model, Move Out of the Way we held a challenge for folks to post one picture each day of AAC users with their AAC systems "in the wild" (in everyday use, preferably out in the world). It was an overwhelming success with hundreds and hundreds of pictures posted from around the world! Posts included some in Dutch, Norwegian, French and Spanish as well as English! The above video is the "long cut" and this is the "short cut".

You can see pictures from the campaign by searching for #seemeseemyaac on Facebook and other social media platforms. The campaign was such a success that another challenge is being planned for July!

Meanwhile, #seemeseemyaac is an ongoing event! Post pictures of your AAC users "in the wild" and add the #seemeseemyaac and join in the fun and inspiration!