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The Communication Interchange - A place for the developmental disabilities community to exchange ideas, information, and resources

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A place for the developmental disabilities community to exchange ideas, information, and resources.

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AssistiveWare’s online learning - AssistiveWare

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Are you an SLP looking for AAC training? Are you new to using an AAC app? We have online learning perfect for you. Connect with our AAC experts in live webinars or learn at your own pace with online video.

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WHAT IS AAC?

Augmentative and alternative communication (AAC) includes all forms of communication (other than oral speech) that are used to express thoughts, needs, wants, and ideas. We all use AAC when we make facial expressions or gestures, use symbols or pictures, or write.

MEMBERSHIP BENEFITS

USSAAC relies on the support of its members to sustain the organization. Benefits include:

Free access to the USSAAC webinar series with free ASHA CEUs

Priority as guest author on the SpeakUP blog

Discounts to the biennial ISAAC conference and the annual ATIA conference

NEW MEMBER BENEFIT

The United States Society for Augmentative and Alternative Communication (USSAAC) has developed a toolkit to promote emergency preparedness for people who use augmentative communication tools and strategies and their families.

Free access to the USSAAC Disaster Preparedness Toolkit for all new members.

Includes templates, emergency plans, communication tools, what to include in an AAC Go Bag and more.

Content is delivered via text to your mobile device or WhatsApp.

Disaster Preparation for People Who Use AAC and their Families

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Augmentative and alternative communication (AAC) includes all forms of communication (other than oral speech) that are used to express thoughts, needs, wants, and ideas. We all use AAC when we make facial expressions or gestures, use symbols or pictures, or write. USSAAC relies on the support of its members to sustain the organization.

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National Joint Committee for the Communication Needs of Persons With Severe Disabilities (NJC)

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The NJC promotes research, demonstration, and educational efforts, including both inservice and preservice, directed to helping persons with severe disabilities communicate effectively. The Committee consists of eight interdisciplinary member organizations, including ASHA.

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Participatory Research – Academic Autism Spectrum Partnership in Research and Education

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Autistic people may take part in research in many ways, including as Scientists, Community Partners, or Study Participants.

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Accessibility options: Click through the slides or download a PDF
Watch the video or get the transcript
or Scroll down to select what you want to read.

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Experiences and perspectives of communicating using augmentative and alternative communication (AAC)

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Experiences and perspectives of communicating using augmentative and alternative communication (AAC)

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You may want to start by writing your ideas in a separate document. This can help make sure you don't accidentally lose your work, and gives you the freedom to edit. You can tell NIDCD whatever is important to you, as much or as little as you think they should know.

We'd like to keep track of the ideas AAC users submit to NIDCD so we can follow up as necessary, so please email a copy of your comments to: info@communicationfirst.org. You may not receive a response from either NIDCD or us, but you can be sure your comments will be read!

Although the field of AAC has existed for more than 40 years, it has yet to make much of a change in our lives. Too much of the research funded by the federal government relating to AAC and people who cannot rely on speech to be heard and understood has not led to meaningful improvements in our lives:

Most of us still lack access to robust, language-based AAC.

Most of us are segregated from the rest of society.

Most of us are denied meaningful educational and employment opportunities.

Most of us live in poverty.

Most of us have almost no agency, autonomy, or decision-making power over our own lives.

Most of us will be abused at least once in our lifetimes.

We still do not have very effective tools that allow most of us to be understood. We also continue to be routinely excluded and isolated from society and denied educational, social, living, and employment opportunities that our peers without expressive communication disabilities enjoy. The reasons for this are widespread discrimination, ableism, and bias and misperceptions about us.

What research will have the greatest positive impact on our well-being? What research will make the biggest difference in our lives? We need to help the government understand these questions.

Language matters, whether it's in conversations or publications. Terms such as "nonverbal" and "minimally verbal" can do real harm, directly or indirectly, to people who need AAC. CommunicationFIRST's Words We Use resource goes into detail about this and other terms, both helpful and harmful, and presents some alternatives.

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Research Priorities of AAC Users | CommunicationFIRST

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We encourage as many AAC users as possible to share your research priorities with NIDCD.

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Communication Agency for Autistic Adults

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Communication Agency for Autistic Adults

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Communication Agency for Autistic Adults

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Pat on the lap + eye rub = I'm sleepy and I'm ready to cuddle.

Mouth open wide + finger inserted = I'm hungry woman. Feed me NOW.

Right fist to left shoulder + pointing = I love you.

This is our language. Our secret language. Our language of love, formed from my daughter's need to communicate with me and my need to understand her. It has been the language we speak for the past five years, with American Sign Language, Spanish and English mixed in. But mostly, it's been our language of love. When she was diagnosed with Bilateral Schizencephaly at 10 months of age, I was told it would impact her production of speech and ability to communicate. I was told she would have some level of mental retardation. I was told this dread and that dread and all I could say was, "Not on my watch." I drove all over town five days a week so that I could one day give those doctors the finger. I refused to let them place limits on her future before she got to live it. She was my child to guide. And thus, we formed our love language.

As these last five years have gone by, I have watched her excel and shatter every limitation doctors once tried to place on her. We've been through just about every therapy under the sun, and if I told you that being dead broke and choosing between diapers and paying a utility bill just so I could have enough gas money to get her to therapy wasn't worth it, my tongue would fall out for lying. It has been five years since her diagnosis, and she is currently learning to walk independently. She is feeding herself, and imitating sounds and word approximations. What they said she would struggle with, she is knocking out of the park. And I couldn't be more proud. At therapy, we continue our love language with fist bumps after every successful pincer grasp, elbow bumps after an extended period of unsupported sitting and strutting like peacocks after a stroll around the clinic. She is a superstar in therapy, rarely complaining, and always ending with a pat on my lap and a rub of the eyes. "Mommy, I'm sleepy and I am ready to cuddle." And of course I oblige -- she's speaking my language.

But I have to tell you, there is a part of me that is unapologetically sad. She is having all of these wonderful, glittering successes, and yet I find myself at the crossroad between being overjoyed and wistful. You see, while she's been making all of these strides, we've managed to hold on to our secret language -- gestures and looks, pointing and lap pats. When no one else knows what she is trying to say, I know. When no one else knows what she is asking for, I know. When no one else can figure out why she's crying, I can. Most of the time, it takes about two seconds, and she knows that if no one else knows her, I know her. But now there's a communication device. It's got pictures that correspond to words, and when she presses one this computerized robot voice tells me what she wants. And if I'm being honest, as much as I love it, it's starting to form the rugged, zig-zag crack at the top of my heart. Now, instead of looking at me and then glancing at the bowl of oranges to tell me she'd like some fruit, there is a button that says "fruit." Instead of patting my lap and rubbing her eyes to tell me that she's sleepy and ready for cuddles and bed, there is a button that says "sleep." This device is granting her so much independence and the ability to speak her mind. It is opening the gateway to conversation for us. It is giving her the skills to one day be able to say "Mom, you're being a real bitch right now and I wish you'd just go away." And as much as I dread that day, I also can't wait for it. I love the fact that my daughter will one day be able to tell a boy he's cute, or a girl she's cute, or a boss he's being a creep, or a teacher that he/she is disproportionately focusing on the role men have played in the civil rights movement. I can't wait to get the note home that says "your daughter is talking too much in class" (actually, yes I can, but I'm going to assume you know what I mean). However, right now, while she's 5 years old and learning the motor planning to tell me she's sleepy or hungry or wants to watch television.

I just want our secret language. I want to hold onto it for all its quirky, silly nuances that only she and I know about. It's selfish, I know. How dare I want us to keep this little gem of communication we've created? How dare I expect her to forgo her own advancement to appease my aching mommy heart? How dare I want my baby to stay my baby forever?

But alas, we didn't go to every therapy under the sun for nothing. So, I'll watch her grow, I'll listen to her punch the buttons and tell me she's hungry/thirsty/sleepy/anything, and I'll applaud her as she gives her graduation speech, 13 years from now, on her communication device. But for now, while she's 5, I'll hold on to any moment I get to share our secret language. Every sparkly-eyed glance. Every wry smile. Every lap pat and eye rub that says, "Mommy I'm sleepy and I'm ready to cuddle." Our language doesn't need a device. It's ours -- glance for glance. And no series of letters strewn together could ever aptly communicate our language of love.

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My Daughter's Speech Therapy Is Breaking My Heart

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Pat on the lap + eye rub = I'm sleepy and I'm ready to cuddle. Mouth open wide + finger inserted = I'm hungry woman. Feed me NOW. Right fist to left shoulder + pointing = I love you. This is our language. Our secret language.

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Supportive and Responsive Communication Partners

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Supportive and Responsive Communication Partners

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Communication Access: Supportive and Responsive Communication Partners

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Understanding Where to Start and Taking the First Step

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Understanding Where to Start and Taking the First Step

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Communication Access: Understanding Where to Start and Taking the First Step

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Communication Access: Increasing Communication Access and Improving Communication Support

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Communication Access in the Digital World Slides

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Communication Access in the Digital World Slides

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TASH Workshop #4: Communication Access & Support in the Digital Age

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Communication Access and Support in the Digital Age Pascal will intro

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The importance of Social Media for AAC Users

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The importance of Social Media for AAC Users

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Conversation isn't just about what we say: it's how we say it, including all the nonverbal cues and intonation that we use to express humour, irony, or irritation. For many people, this makes face-to-face interaction exhausting. One described how Facebook deepened and improved their friendships because they "can only handle seeing my friends a few days out of the month."

"Using AAC in a group of people in a room is actually quite difficult, but posting in a group on Facebook - is more simple." ~ Trish Duffy, AAC user

Social media allows the AAC user to control the physical environment when communicating, reducing access barriers. One user, who struggles to process speech when there is background noise, can better understand their speaking friends when they also communicate with written text. Many complain that their AAC is often difficult to understand in noisy social environments, so they feel more understood on social media.

"Social media lets me connect to ALL of my friends, stay in touch, and maintain relationships. I was doing that even when we all lived in the same city because I can still really only handle seeing my friends a few days a month. Facebook and Twitter have let me really connect with them better." ~ Darla Burrow, AAC user

Negatives of social media

Social media can be a negative experience for anyone. It is easy to misconstrue a written message without the nuance of facial expressions and gestures to indicate if a comment was meant as irony or sarcasm. Some researchers have found that it can enhance the sense of loneliness, isolation or grief if a person is dealing with difficult medical issues and feels cut-off from the life they had before disease. Some AAC users told us that they prefer the social closeness of face-to-face communication.

Personal choice

Ultimately, our goal is for every person to communicate with others on their own terms. AAC users need access to social media so that they can decide for themselves if it is helpful and positive.

Which social media platforms are best?

Each social media platform improves access to communication in different ways.

Facebook is the best platform for finding communities of peers with the same interests, experiences, or disability. This creates the opportunity to both receive support and become a mentor who supports others. We heard from AAC users with a variety of diagnoses, from developmental disabilities like autism to neurological and autoimmune diseases like MS, that social media had allowed them to find a community of others who share both their challenges and their strategies and solidarity.

The Twitter platform values short, concise messages. It is more tolerant of errors in spelling or grammar. This makes it particularly helpful for AAC users whose access method is very slow or accuracy on a keyboard is challenging. AAC users who struggle with large blocks of text report that Twitter has nice bite-size chunks that they find accessible.

Many AAC users appreciate having a "soapbox" to share their opinions, advice, and information on a range of issues. This may allow these users to have more opportunities to set the topic of conversation. Twitter, Facebook, and blogging are excellent platforms to have your say.

Some people with communication impairment, such as those with aphasia, find photographs and video more accessible than text-based platforms. Instagram and Facebook rely heavily on photographs, which are highly-contextual and accompanied with photo captions.

How can we improve access to social media for AAC users?

AAC users should have access to social media. There are a number of factors that can support this access.

First, an AAC user has to have the technology support. They need access to a device or computer. They also need access to the internet. Research shows us that disability can be a risk factor for decreased access to the internet. Some may need tech support to create accounts and learn how to use the social media platform.

Many AAC systems, like Proloquo2Go, simPODD, and Proloquo4Text integrate well with social media for creating posts. Any messages written in the message window of Proloquo2Go and simPODD or the text pad of Proloquo4Text can be shared directly to platforms like Twitter from within the app. Other messages, comments, or responses can be written in the AAC and then copy and pasted into the social media platform. This is a very powerful way for the AAC user to compose messages in the way that suits them best before adding to social media.

Teams, including Speech Therapists, need to increase the support and focus of using social media for AAC users. Practicing using social media and taking time to make a plan for how social media could be beneficial is important. We all need to understand that social media can be an essential form of AAC and it should be included as part of every AAC users' support plan. For example, perhaps participation on social media could be included in a disability support plan, by creating a Facebook page for an adult living in care to stay in touch with family members and friends.

Students who use AAC can begin exploring social media as part of their individual education plans. As teams plan for the student to transition from school to life after school, they can also plan for how the student will be supported to maintain friendships and broaden their community on social media. Peer buddies can be involved to help the student set up and maintain their social media presence.

Summary

Social media is its own form of AAC. When AAC users have access to different social media platforms, it can open a world of possibilities and enhance the communication and relationships with the people around them.

Links & references:

Canon & Light (2015) "My world has expanded even though I'm stuck at home." Experiences of individuals with ALS who use AAC and social media. American Journal of Speech-Language Pathology. 24, 680-695

Hartmann, A & Sheldon, E. (2019). Just Ask: What we can learn from AAC users. [Blog post]

Paterson, H. (2017) The use of social media by adults with acquired conditions who use AAC: current gaps and considerations in research. Augmentative & Alternative Communication, 33(1), 23-31.

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The importance of social media for AAC users - AssistiveWare

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Discover the importance for people using Augmentative and Alternative Communication (AAC).

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How to be a respectful communication partner

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How to be a respectful communication partner

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The AAC users we interviewed shared ten specific strategies or insights that seem the most universal.

1. Good communication partners respect the effort AAC takes

For most people, AAC is more demanding than speech. (A minority of AAC users find speech more difficult than AAC.) Using AAC is labor-intensive. When we speak the words of our first language, we usually think only about the idea we want to express. The individual words just "come out." Using AAC requires far more conscious effort than unimpaired speech. Each individual word has to be generated. For some AAC users, the motor coordination to select or compose a single word is a massive effort. Good communication partners respect this effort. They show their respect by accepting communication in whatever form or combination the AAC user selects: gestures, vocalizations, facial expressions, AAC, and more.

2. Good communication partners are patient and wait

AAC takes more time. A lot more time. The average person speaks 2-3 words per second, or between 150-170 words per minute. An expert typist can produce 75 words per minute, but the average person can type fewer than 40. Most of us can only type one-quarter as fast as we can speak. Most AAC users are not producing messages in ideal typing environments, and many have additional challenges that slow their speed of production. Some AAC users, like some speaking people, need additional time to consider what they want to say. The average AAC user can produce about 15 words per minute. Good communication partners are patient listeners. After they greet the AAC user or ask a question, they wait as long as necessary to hear the response. A common message we heard was "give me time and space so I don't feel rushed."

3. Good communication partners help manage noise

AAC affects how we experience noise. Most AAC systems that generate speech have a limited range of volume. Volume on an AAC device cannot fluctuate as easily as speech, which can range from a whisper to a shout in the same sentence. A noisy cafe, work space, or classroom can drown out the AAC volume. In addition, many AAC users told us they are extra sensitive to background noise. They struggle to process speech in loud environments. Good communication partners help manage noise. This might include taking a conversation into a different room or selecting a different cafe to meet for lunch. It might mean moving a conversation from real-time to having it by email, instant message, or on social media. This could level the playing field if both communication partners are typing or using AAC.

4. Good communication partners help manage physical space

AAC changes how we experience physical space. Bright sunlight can make it difficult to view the device screen. AAC users may require regular access to electrical outlets to charge the device. The table or desk might need to be larger, to hold the usual laptop or meal, plus an AAC device. The AAC user may require extra room to type or select icons. Standing while using AAC can be more difficult than standing and talking if the device needs to be supported. Many AAC users have additional access needs, such as wheelchairs or medical devices. Some may find it difficult to even leave the house. Good communication partners try to find the spaces that are the most accessible to the AAC user.

5. Good communication partners watch the person, not the device

AAC changes the timing of messages and how messages are delivered. For example, an AAC user might contribute to a conversation by touching the screen of their iPad. They might construct the message, then activate speech, so that their message plays in the next moment. Speech is simultaneous with thought for speaking people, but there is a delay for the AAC user because they are speaking with or through a machine. The AAC user then has to activate facial expressions as their message plays, rather than their expressions naturally being simultaneous with their speech. Good communication partners learn how important it is to watch the AAC user's face rather than their device while the message plays. They learn to allow for these changes in the timing of messages.

6. Good communication partners pay attention to the message and other cues

AAC (like all printed messages) is more easily misunderstood than speech. With speech, many of us can easily convey sarcasm, questions, humour, and irritation. Our tone of voice and rate of speech changes when we express an opinion versus make a flippant remark. We emphasize key words to convey meaning. The three words, "You like that", can shift from a simple remark, to a question, to a statement of disbelief or horror, just by emphasizing a different word and shifting the tone. Digital voices are much less flexible. Good communication partners are attentive and observant. Rather than jumping to conclusions about what a person means to say, they look for different cues. They actively consider different meanings, and ask clarifying questions if needed.

7. Good communication partners do not dominate the conversation

AAC changes the routine of conversation. Conversation is a dialogue between two or more people. It is constructed together. It is not an interrogation, with one person asking questions while the other person responds. It is not a monologue, where one person just observes and listens. Speaking people usually have the advantage in conversations with AAC users. It is easy for a speaking person to dominate a conversation, such as swiftly changing subjects while the AAC user is still generating a message. Good communication partners actively try to level the playing field. They seek ways to explicitly pass control of the conversation to the AAC user. They also allow time for the AAC user to take their turn in the conversation.

8. Good communication partners respect an AAC user's voice

Using AAC is deeply personal, the same way that our voices are deeply personal. Our voices are a reflection of our identity. They can reflect our age and cultural background, how we express our gender, how we were educated and where we live. We would expect an American teenager to sound very different from a Dutch child or an Australian retiree. Shaping our voice is a key part of how we express our identity. There are many more options today for the voices used in AAC, but we still lack digital voices for most regional accents and across a range of identities. AAC users need more people to advocate for more voice options. The design of an AAC device is often impersonal. It is a machine. Some use digital voices, while some use the recorded voice of other people. Imagine being a teenager who sometimes speaks with your mother's voice, other times with your sister's voice, and sometimes with your teacher's? Some AAC users may be reluctant to adopt the AAC device as an extension of their own voice. They may need to spend a lot of time ensuring that the voice and the words truly reflect them as a person. Good communication partners learn how the AAC user feels about their voice and respects those feelings and limitations.

9. Good communication partners ask

AAC can become an extension of an AAC user's voice. They may find it invasive if other people try to touch or use their AAC.One AAC user compared this to someone opening your mouth and trying to dig around in your vocal chords! The individual vocabulary, pre-programmed messages, and the history stored in the device, may all be deeply personal. Good communication partners will ask before trying to look at, touch, or use an AAC users device. Some AAC users may prefer you use your own device rather than touch theirs.

10. Good communication partners accept that communication is on the AAC users terms

AAC is a revolutionary and transformative technology. It can move someone from isolation and powerlessness, to connection and autonomy. It can also be very limiting and imperfect. The best AAC is rarely as expressive, flexible, or individual as speech. AAC users may have a love-hate relationship with their technology. Some are afraid to become dependent on it, because they fear what happens if their AAC is taken away, broken, or not available. Good communication partners do not impose their own feelings about how the AAC user "should" feel about their technology. They do not insist the person use their AAC, or not use it. Instead, good communication partners are so interested in what the AAC user has to say that they accept all communication, however it is expressed and however long it takes to convey.

"My partner is my favorite person to communicate with. He's very understanding and I never feel judged by him. If I'm using speech and begin to struggle he will prompt me to get my iPad out (I often forget). He waits for me to type or find symbols in Proloquo2Go.

He is completely understanding of how I may switch back and forth between AAC and verbal speech. It doesn't faze him or make him value one form of communication more than the other.

He values me communicating, however that may be. He listens."
~ Oliver Waite, AAC user

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How to be a respectful communication partner - AssistiveWare

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The AAC users we interviewed shared ten specific strategies or insights that seem the most universal. For most people, AAC is more demanding than speech. (A minority of AAC users find speech more difficult than AAC.) Using AAC is labor-intensive. When we speak the words of our first language, we usually think only about the idea we want to express.

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Most people with complex communication needs share four things in common:

They cannot rely on speech alone to meet their communication needs

They likely use, or would benefit from, some form of technology to communicate

They face barriers to express their ideas - barriers that go beyond the specific technology they use to communicate

They would benefit from Augmentative and Alternative Communication (AAC) supporters, allies who are committed to improve their access to communication

Download the "Barriers to Communication" checklist
Identify barriers and find solutions.

When Sofia was ill and went to the hospital, she asked her friend Alex to come with her. Alex explained to the hospital staff that Sofia uses AAC and needed them to wait patiently for her to type her answers. Sofia felt that Alex's support changed how the staff of the hospital treated her. She felt she received better care as a result.

Daniel has moments of "overwhelm" where his brain feels foggy. He can become easily distressed when something goes wrong. In these moments where he struggles to explain what he needs, his friend Jessie is a great support. Jessie reminds Daniel to use his AAC. Jessie prompts Daniel to open his folder of phrases that something is wrong. Jessie offers suggestions of what the problem might be so that Daniel can just indicate yes or no. He helps piece together whatever Daniel is able to express so that he can interpret for others what is happening. With Jesse's support, Daniel feels more understood.

Samuel loves his classical literature class. But he began to just observe the discussion rather than try to participate. His friend Taylor saw that the teacher often missed Samuel's efforts to raise his hand, or didn't notice he was drafting a response. Taylor offered to raise his hand whenever Samuel indicated he had something to say. With this support, the entire class learned to wait for Samuel's contribution.

AAC supporters are persons who help problem-solve with the AAC user to support their communication. Researchers have described this role as an "AAC facilitator." Others might refer to them as an AAC supporter or ally. Whatever we call it, AAC supporters are people who are willing to take action to support an AAC user to be heard.

Supporters recognize that using AAC is hard work. Their support is provided in solidarity. They do not speak for the person. They directly ask the person (whenever possible) how they want to be supported. Supporters simply help level the playing field so that the AAC user can speak for themselves.

Many people fill informal roles of AAC supporter. If the AAC user is still in school, then their AAC supporters are likely classmates, parents, therapists, or teachers. If they are an adult, then it may be a friend, partner, sibling, or disability support person. Most people who fill this role don't even know there is a name for it. Most supporters fill some part of the role, some of the time, rather than committing to support the user's communication across all contexts.

Most AAC users have inconsistent support. This means they may only be heard in some places, some of the time. Every AAC user would benefit from a plan to select and train one or more people to be their AAC supporter, as needed, and on their own terms.

You might already be an AAC supporter!

You have done some of the work of an AAC supporter if you have ever:

researched communication options for yourself or a family member who cannot rely on speech alone, such as comparing apps;

advocated for a school team to provide AAC to a student;

noticed that a classmate does not have their AAC and asked the teacher to wait while you helped retrieve it;

prompted a student or client to finish their message so that others can hear from them;

modelled the use of an AAC system to a classmate who is just learning AAC;

asked a disability support organization to refer someone for AAC support;

helped answer questions about how the person communicates during an AAC assessment;

encouraged your friends to wait politely while the AAC user constructs a message;

explained to someone in customer service that the person uses AAC and will talk with their device;

attended medical appointments or other important meetings with an AAC user, to help ensure that their questions were all answered and that they were involved in their own decisions;

programmed messages into an AAC system on behalf of the AAC user.

The AAC supporter helps carry some of the work of accommodation in a world that is often inaccessible to people with a range of communication disabilities. They work directly with the AAC user to ensure this support is on their own terms.

Who could be an AAC supporter?

AAC supporters can be anyone! They are often friends or classmates, parents or adult children or siblings, partners or spouses, or disability support staff.

AAC supporters should:

know the AAC user well, and spend a lot of time with them, so they can notice barriers to communication;

with the AAC user, identify problem and brainstorm possible accommodations;

advocate for solutions.

In formal spaces, such as schools or workplaces, most AAC users need a designated AAC facilitator. This should be someone with a level of authority to make changes as needed, such as adding accommodations to an individual education plan or ordering equipment or staff training.

What does an AAC supporter do?

If the AAC user is a student, then a supporter is often a classmate who helps arrange the AAC within reach, alerts others if the person is constructing a message, and encourages classmates to wait for a response. The ideal AAC facilitator might be an administrator, teacher or therapist who has the kind of flexible schedule to move around the school and negotiate solutions with the adults in the environment.

An adult who has recently lost speech needs an AAC facilitator. This person can ensure there is a referral to AAC assessment, that a range of AAC solutions is considered, and that AAC is obtained and effective. They may watch webinars to learn how to program new messages into the AAC, ask tech support for help, and ensure support staff keeps it charged and available. They might help the person create a blog to stay in touch with friends or join Facebook to find a community of others who face the same challenges. They might train others how to communicate best with the person who has lost speech.

Long-time adult AAC users likely have friends, partners, and others who are informal AAC supporters. These users might consider where they are currently most able to communicate, and where they still face barriers. Those places where communication is still difficult might benefit from requesting an AAC supporter.

Do it yourself

Behind most successful adult AAC users appears to be...themselves. In interviews with over two dozen AAC users, we only found one adult who could describe anyone in their life who fills the role of an AAC facilitator. This should concern everyone in the field of AAC. Beukelman, Ball & Fager (2008) found that it is rare for an AAC user to be effective as their own facilitator. It's more common for AAC users to respond to the ableist barriers they face by changing their own behavior, reducing their AAC use, and simply communicating less.

We can only guess how many AAC users are silenced by the barriers to being heard. As one person said, "I communicate less when I don't have the support of those around me." By themselves, AAC users cannot solve access issues that are not under their direct control, such as changing the format of a workplace meeting or how a teacher leads a discussion. If others have been reluctant to accommodate them in the past, they may be hesitant to ask their employers, friends or family for additional accommodations. This is where an AAC supporter can help level the playing field. Accommodating AAC is not special treatment: it is simply necessary to ensure the AAC user can fully participate in all aspects of their lives.

Questions to ask

Have you thought of all the potential barriers an AAC user may face across different environments? Have you thought about how you can help create a more accessible communication environment? Have you identified another person in that environment who could volunteer to help problem-solve those barriers?

Download the "Barriers to Communication" checklist
Identify barriers and find solutions.

Summary

The AAC supporter removes barriers so that the AAC user can be heard. Do you know someone who could be an AAC supporter? Share this article and checklist with them today!

Links & references

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How to be an AAC supporter - AssistiveWare

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Most people with complex communication needs share four things in common: They cannot rely on speech alone to meet their communication needs They likely use, or would benefit from, some form of technology to communicate They face barriers to express their ideas - barriers that go beyond the specific technology they use to communicate They would benefit from Augmentative and Alternative Communication (AAC) supporters, allies who are committed to improve their access to communication Download the "Barriers to Communication" checklist Identify barriers and find solutions.

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The following is the text from a speech delivered by NYU Professor Kristie Patten Koenig at the Doctoral Convocation Speech for NYU Steinhardt, May 11, 2017 First, on behalf of the faculty I w…

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The Most Important Three-Word Phrase

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Reducing Vulnerability for Nonspeaking People

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Reducing Vulnerability for Nonspeaking People

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People with any form of disability are more vulnerable to a range of abuses. They are particularly vulnerable to assault. According to the US Justice Department, people with disabilities are twice as likely as people without disabilities to experience sexual assault. People with developmental or intellectual disabilities are seven times more likely to be sexually abused than people without a developmental disability. Females are the most at-risk; women with developmental disabilities are 12 times more likely to be sexually assaulted than women without a developmental disability (NPR, 2018). The combination of communication and developmental disabilities significantly increases the risk of abuse: "the more severe the speech problem, the greater prevalence of sexual abuse." People who cannot rely on speech may be perceived by their assailants as a "low-risk, easy target" for abuse.

5 key factors that make AAC users more vulnerable

1. Power differential

Many people with disabilities require support with daily living. Many systems of providing support give more power to the care provider than the person receiving care. Nearly half of all physical and sexual abuse is committed by paid care providers. Family members are the next most common offenders. Just like in the general public, most sexual abuse is committed by people who know their victims well and have a personal relationship with them. All people are safest where the power differential is lowest. The power differential changes when AAC users have the power to direct, hire, and fire their support staff.

2. Physical isolation

Formal, paid disability support services have been identified in multiple studies and criminal justice statistics, as "a place of risk." (The Roeher Institute, 1994; NPR, 2018; Cadwallader et al, 2018) The third most frequent group of offenders against people with disabilities are other people with disabilities, "clustered with their victims" (Sobsey and Doe, 1991) in formal disability services setting like separate schools, classrooms, and care facilities. These separate settings often have fewer potential witnesses to report behaviors of concern from caregivers of from other clients. AAC provides more opportunities for more people to report abuse they experience or witness.

3. Smaller social network

Many people with disabilities have a small network of friends and family. Most of their interactions may be with support staff. AAC users are safest when they have a strong social network of people who know them well, see them often, and can effectively interpret subtle messages that something is wrong. AAC can strengthen and broaden a person's social networks, reducing their vulnerability.

4. Reduced choice and control

Many children and adults with disabilities are socialized to be compliant. This discourages them from speaking up when they don't like something. People with disabilities often have less choice and control over their lives, including where they go during the day and who provides their care. They often have reduced privacy. Person-centered planning and supported decision-making all maximize choice and control for the AAC user.

5. Reduced ability to report

Many AAC users only have access to the words and messages that others have provided and taught them to access. This can make it difficult for them to report abuse. AAC users may need to be explicitly taught and encouraged to refuse or say no. They should be encouraged to report on their satisfaction with the care they receive. All AAC users need access to the words that can describe abuse, such as words for private or sexual body parts.

Prevention and proactive attitude

There are a couple of strategies to prevent abuse and safeguard the AAC user.

Teach AAC users to speak up

The process of supported decision-making protects and supports the autonomy of people who are at risk of not being heard, such as people who are learning to use AAC. AAC users may need training and support to exercise their own autonomy, to make their own decisions, and to share them. They need to learn from experience that when they speak up or appear critical, this self-advocacy is valued and heard.

Teach AAC users how to refuse, reject, and say no. These are essential communication functions and are included in the Communication Bill of Rights. We can teach AAC users, by our example, that we value their communication about what they don't like or don't want.

Model consent with AAC users. Ask their permission before touching their AAC, their body, or providing support.

Teach supporters to interpret behaviour

AAC users, like many people with a disability, are at risk to be perceived as demonstrating "challenging behavior" when they assert themselves, try to express that something is wrong, or when they refuse to comply. Teach all those who support the AAC user to listen carefully to the potential meaning behind behaviors that may appear challenging. Aggression, avoidance, and withdrawal can all be possible symptoms of abuse. If an AAC user suddenly avoids people or places they once enjoyed, investigate what has changed.

Lou Brown, a legendary disability right advocate, summarized the research like this: "people with disabilities are safest in wide open spaces, with people who know them well, who have no power over them. They are most vulnerable in separate spaces, with people who have power over them, and no competent witnesses." Let's reduce the vulnerability and ensure the safety of all AAC users.

Links and References

Thornberry & Olson, (2005). The Abuse of Individuals with Developmental Disabilities, Developmental Disabilities Bulletin.

Shapiro, (2018). Special Series: Abused & Betrayed, National Public Radio.

Sheldon (2018). "Wide Open Spaces", IMPACT: Feature issue: Inclusive Education.

Fitzsimmons (2009). Combating violence & abuse of people with disabilities. Brookes Publishing.

World Health Organization, World Report on Disability, 2011.

Peckham (2007). The vulnerability and sexual abuse of people with learning disabilities. British Journal of Learning Disabilities.

Hughes, Bellis, Jones, Wood, Bates, Eckley, McCoy, Mikton, Shakespeare, & Officer, (2012). Prevalence and risk of violence against adults with disabilities: a systematic review and meta-analysis of observational studies. Lancet.

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Safe and secure: reduce vulnerability for nonspeaking people - AssistiveWare

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People with any form of disability are more vulnerable to a range of abuses. They are particularly vulnerable to assault. According to the US Justice Department, people with disabilities are twice as likely as people without disabilities to experience sexual assault.

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The Syracuse University School of Education prepares thoughtful and socially just leaders who bridge scholarship and practice. We enhance student learning and success, physical activity and health, and mental health and wellbeing across communities through collaborative partnerships and multifaceted inclusive approaches.

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School of Education - Syracuse University

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The Syracuse University School of Education prepares thoughtful and socially just leaders who bridge scholarship and practice. We enhance student learning and success, physical activity and health, and mental health and wellbeing across communities through collaborative partnerships and multifaceted inclusive approaches.

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But You Dont Look Sick? support for those with invisible illness or chronic illness

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Please take the time to read Christine Miserandino's personal story and analogy of what it is like to live with sickness or disability.

The Spoon Theory

by Christine Miserandino www.butyoudontlooksick.com

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn't seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don't try to explain this, how could I ever expect her to understand. If I can't explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said "Here you go, you have Lupus". She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn't have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a "loss" of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn't understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of "spoons". But when you have to now plan your day, you need to know exactly how many "spoons" you are starting with. It doesn't guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started yet. I've wanted more "spoons" for years and haven't found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said " No! You don't just get up. You have to crack open your eyes, and then realize you are late. You didn't sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don't, you can't take your medicine, and if you don't take your medicine you might as well give up all your spoons for today and tomorrow too." I quickly took away a spoon and she realized she hasn't even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn't want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn't even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your "spoons" are gone, they are gone. Sometimes you can borrow against tomorrow's "spoons", but just think how hard tomorrow will be with less "spoons". I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on "spoons", because you never know when you truly will need them. I didn't want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn't have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn't even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can't do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn't want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly "Christine, How do you do it? Do you really do this everyday?" I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can't forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, "I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared."

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day's plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count "spoons".

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can't go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said "Don't worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don't have room for wasted time, or wasted "spoons" and I chose to spend this time with you."

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn't just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don't take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my "spoons".

© Christine Miserandino

*We have English, Spanish, French and Hebrew translations of "The Spoon Theory" available.

You may NOT publish or re-print this article without the written permission of Christine Miserandino and ButYouDontLookSick.com. Thank you.

The Spoon Theory Large Poster - $22.99

The Spoon Theory Small Poster - $18.99

Most importantly, get one for yourself!

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The Spoon Theory written by Christine Miserandino - But You Dont Look Sick? support for those with invisible illness or chronic illness

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Please take the time to read Christine Miserandino's personal story and analogy of what it is like to live with sickness or disability. Click HERE to download "The Spoon Theory" in PDF format. The Spoon Theory by Christine Miserandino www.butyoudontlooksick.com My best friend and I were in the diner, talking.

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Listen, Acknowledge, Include | Glenda Watson-Hyatt | TEDxSFU

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Remove Barriers to Communication with AAC

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Remove Barriers to Communication with AAC

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Designing AAC Research and Intervention to Improve Outcomes for Individuals with Complex Communication Needs

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TASH 2020: Communication and Self-Determination for Everyone

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TASH 2020: Communication and Self-Determination for Everyone

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TASH Communication and Self-Determination for Everyone

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Communication and Self-Determination for Everyone TASH Communication Access Workgroup Introductions

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Podcast: AAC as a Tool for Self-Determination

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Podcast: AAC as a Tool for Self-Determination

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Many people who cannot rely on words to speak struggle to be understood. Loved ones and support people often do their best to apply what they know of the person's preferences to the planning process, but may fall short because they lack a direct way to ask the person what they think.

Augmentative and Alternative Communication (AAC) methods can provide access to communication and serve as a tool to directly understand the thoughts, preferences and choices of people with significant disabilities and communication barriers.

AAC technology can support us to understand a non-speaking person even before the person can use the technology themselves.

In this audio version of a live presentation, Erin Sheldon, M.Ed., provides an overview of AAC as a tool for self-determination and supported decision making.

Erin presents practical tools that can be used by family, friends and professionals starting today.

Genia: Welcome to the Good Things In Life Podcast, the podcast that helps parents of kids with intellectual disabilities to build good lives in their community. I'm your host Genia Stephen. I'm an imperfect parent with a perfectly clear vision of where my son and other people with disabilities belong, right in the heart of community with everyone else. This week's podcast episode is a recording of a live event presented by Erin Sheldon titled Using AAC as a tool for self determination and supported decision making: how to stop guessing what people want. If you don't know, Erin Sheldon earned her graduate degrees studying the educational needs of students with Angelman Syndrome.

Genia: Erin conducts professional development workshops and webinars for educators and therapists on the assistive technology, communication and literacy needs of students with significant disabilities including Angelman. She has published journal articles, book chapters, and manuals for educators. Erin is the CEO of Integration Action for Inclusion: Ontario's parent association for school inclusion. She works for Assistiveware, which is a company that makes and distributes AAC software. And Erin is the mother to two girls - Maggie, a 16 year old with Angelman Syndrome and Ella. Now, the response to this live presentation was really positive. Speech language pathologists, educators and parents had been emailing in to tell me how very helpful it was. So, go to goodthingsinlife.org/031, download the slides and handouts, grab a coffee and a pen and enjoy.

Erin: The intention and being in this field until Maggie was born and it just seemed, it was just what I had to do in order to make sure that her her needs were met. So, this talk today, this topic about supporting autonomy with AAC, really I contacted Genia after she did that amazing series on supported decision making because my daughter is, she's just turning 16, she's going into grade 11 in high school and we've been thinking for several years about how we would support her to make her own decisions as she approaches adulthood. But what I kept finding in the literature, if you just read up on supported decision making was kind of if a person can communicate, then here's how we do it. And if they can't communicate, then we just do our best to interpret them.

Erin: And the people around them really end up making the decisions for them. And so, what I've been trying to figure out for the past year or two is where's that middle ground? How do we make sure that we are actually teaching students the skills they need to be able to make their own decisions? And how do we, regardless of how old someone is and whether they're still in school, how do we move past that point where we're trying to make the decisions we think that they would make, are there, what can we do to improve their autonomy as much as possible regardless what levels of skills they have with technology? So, just to get some common terminology going before we keep going, what is AAC? I imagine you already know what that is, if you've signed up for this, but if you haven't, it's anything that it's any technology or strategy that augments speech.

Erin: So, just the fact that I use my hands is I'm augmenting speech. I can't help it. But it's also anything that's an alternative to speech. And we all know what AAC is because we all use it. If you've used the chat window, you are using an alternative to speech. If you've ever sent a text message or posted a Facebook status update or sent an email, then you have used an alternative to speech and you abused AAC. And what I've heard from many adults who use technology to communicate is that the way they think of it is that everyone uses AAC. AAC is completely universal. Every gesture we use is ace is AAC. What's not universal is speech. Some people cannot rely on speech to meet their communication needs. And so, just think of it that way as AAC is a more universal way that we all communicate together.

Erin: And so, AAC might be something that has voice output. Like if you use an iPad with an app and when you press a button, you hear a voice then it, then that's for as output. AAC can be visual symbols. So, you press a symbol that represents where it's like I and you. And do and don't. It can be photographs and it can be selected and letters of the alphabet cause the alphabet is really just a symbol set, right? Each letter just stands for a different sound and we put those together to form words. It might have hardware like an iPad and it might be a printed book, like a Pod Book, a pod communication book. And so, you know, all AAC has something if someone says, you know, reuse an iPad for this student to communicate, that doesn't tell you very much.

Erin: That just tells you what the hardware is, but we don't really know what words they have access to. And it might be, is as simple as just using social media. So, robust AAC is different than just any form of AAC. If someone says, for example, my son has a pecs system that too, they see, then we would probably say back, that's great. So, he's got a way to request things but that's probably not robust AAC because we don't know from that that the person can say anything anytime, anywhere to anyone. And so, our goal with robust AAC is that you can generate just about any message. It's really only robust AAC. If there's a symbol system, there has to be some form of symbols. Photographs by themselves are not AAC all alone because have you ever seen a photograph of tomorrow or a photograph of yesterday or a photograph of even a photograph of I'm scared or a photograph of, I had a nightmare.

Erin: Have you ever seen a photograph of dead, right? What would that look like? Would we really want to use that? But, dead and death are words and concepts that we need to be able to communicate about. And so, it's not robust if there's not a symbol system. It's not robust if there's not a really broad range of words that we can say in order to meet a really broad range of communication needs. So, if I referred to robust AAC or anything we see really in today's session, we'll be assuming that you've got something more robust than a peck system or a photograph system. And really for in terms of supporting our sons and daughters or whoever else, we're supporting AAC as a second language. We can think of speech as a first language that most people can use and AAC as a second language.

Erin: And if we're trying to teach AAC to someone, we really do need to think of it as a second language. It's usually a visual language. So, if you can't generate words out of your mouth, then you need an alternative. And the most common alternative is a visual language. And we can think of AAC as the second language and as the shared language that that if our son or daughter can't speak with us, then we need to think about a shared way where we can both communicate. And that's really where we're thinking about AAC. If a person cannot rely on speech, then they need an alternative to speech or they can't meet their communication needs. If they're learning to use AAC. And especially if they have very early skills and they haven't yet learned different symbols for different things, then they really need a second language environment with AAC where they're seeing other people communicating with an alternative to speech.

Erin: And I think most importantly, if you have a son or daughter or a student or a client who it's not clear that they understand speech, there's many reasons why they might be struggling to understand speech, then they really need AAC. And they really need us to use it with them because they might need a visual language and a visual language, which is much more stable. And as I put it here on the slide, less fleeting than speech. Speech moves very, very fast. Every word is fear and gone is as quickly as it's said. And so, if we believe that someone is really struggling to comprehend speech, then we need to provide a visual language systems. So, you can read more up on AAC. I'm not going to go into it more deeply than this. I will talk a little bit about AAC modeling. And when I talk about modeling, I mean it's us as speaking people using the AAC system in order to demonstrate how it's used and how we create that kind of second language environment. And so, then the other question that I just want us to think about as we go into this is what do I mean by autonomy? And go ahead and say something in the chat about what you think of when you think of autonomy.

Genia: Erin, just while you're waiting for people to respond there, you've got an apple colors toolbox there on the screen that's blocking part of your slides. I'm not sure if it's there intentionally or not.

Erin: Well, colors. Oh, hold on a second. I don't see it on mine. Does it, is it this thing?

Genia: It's gone now.

Erin: Alright. Sorry about that. I just give the answer. So, does anybody have any comments about what you think of when you think of autonomy? Having your own sense of agency? That's from Molly. Karen saying, say what I want, when I want to, whom I want. Those are all perfect. The things I would add to that are self-governance, right? Being in control of your own life, in control of your own self. Having choice and control over your own life. Being understood. And I think being understood, I'll get into that a little bit because it's not enough to just have the words to say what you want to say, but those words also have to be understood by other people. We know that for example, being able to say words by itself means nothing if other people aren't listening.

Erin: I think the Me Too movement has really shown us that, that you can have all of the words, you can be a completely verbal person with a very large vocabulary, but if you're not listened to and heard and understood and people aren't acting on what you're saying then they're limiting your autonomy. So, the old way, and this is just my interpretation as a parent, when I was introduced to AAC, it seemed that this is how the speech pathologist assumed autonomy develops. That we start by having the students select the correct objects. I say, where's The cup? And you hand me the cup. And then once they've figured out that, then we say, show me the picture of the cup or show me the picture of the cat or the dog and you get it for them. And then we say, show me the symbol of the dog or the cat.

Erin: And then I say, you know, you reach for something. And I say, you know, that kind of next step is, you know, say I want, you know, put it together. I want, I want [inaudible] or I want eat or drink. And I think our thinking was that if we just tell people what to say and how to say it, that they would eventually get to this point of graduating where they can now say anything to anyone. This is just my interpretation of what our field of assistive technology and AAC seemed to think was happening. The problem with this way of thinking is that we, what we're really doing is teaching compliance, right? Selecting the correct object structure, selecting the correct picture structure, selecting the correct symbol. But all of these are really about following somebody else's directions. And we're assuming that if, if you learn to comply was what I tell you to do, then that will get you to a point where you cannot say anything.

Erin: And it also presumed that we know what the correct answer is. If I say, use your words, say I want pizza on your device, I'm assuming that I know that you want pizza. And we might not always be correct with that, but this is, if you just look at how we've often done speech pathology, speech therapy, this is kind of what it's looked at. The issue being, we have no evidence that learning to comply teaches you to speak for yourself. And in fact, we actually have a lot of evidence to the contrary. We have ample evidence that learning compliance makes you more vulnerable. So, our goal is self-governance, right? Having choice and control and ownership of our own life so that we can be understood and we can go do what we want to do with whom we want to do and say what we want to say all of that.

Erin: But we have to figure out a way to do it that isn't based on, I'm going to teach you to have power over your life by making you comply with what I tell you to do. And the reason this is so important is that our sons and daughters and students and clients, because of their disabilities, they're already more vulnerable. The US Department of Justice estimates that just having a developmental disability for example is associated with a three times risk of being physically abused or assaulted and a five times risk of being sexually abused. Women with a developmental disability are even more vulnerable. Depending on the study that you look at, anywhere from 40 to 80% report that they've been assaulted by the time they become adults and half of them more than 10 times. So, we really have to question things.

Erin: That assumptions that learning to comply can somehow teach you autonomy. We know that within women with developmental disabilities, more than 40% of women with developmental disabilities who had been sexually assaulted were actually non-speaking. And the research showed that the more severe their speech problem, the greater their risk of abuse. And the issue was that they were seen as an easy target if they can't use speech. So, there's a number of things that heighten the risk factors for vulnerability for people with disabilities. And one of them is having reduced choice and control. One of them is social isolation. And both of these together are really common with our sons and daughters. One of the things that we often end up teaching people with developmental disabilities or range of disabilities is reduced choice and control, rewarding them for compliance and punishing them for speaking out.

Erin: And in fact, there's actually a lot of research that when people who are nonspeaking try to express a negative opinion, it's very likely to be interpreted as a challenging behavior and as a problem that needs to be extinguished as opposed to an opinion that needs to be, that has the right to be expressed and that we need to support that expression. And we know that if you're nonspeaking it's very difficult for you to give testimony to what happened. You're off, you're usually considered an incompetent witness. And so, if you don't have a symbolic way of talking about what's happened to you, then you're just at heightened risk. So, all of that to say that if our goal is to teach people to be autonomous, then they need to experience choice and control from as young an age as possible. They need to experience that when they express a negative opinion that's valued, that that's actually what we want to hear.

Erin: That there's no correct answer of how you feel about something. The only correct answer is really only what you know as the person experiencing it. And so we can think of kind of a new framework for thinking about how we expand autonomy. And this is just my working model based on the literature and supported decision making. And supported decision making is just a structure that supports a framework that supports people to have more autonomy. And it seems to start, from what I can tell, reading the research and trying to apply this myself is it starts with a foundation of supporting people to express preferences. We want to know what they like and what they don't like. And we need to hear that. We need to hear their opinions and support them to be as clear as possible and support other people to hear that when they do.

Erin: We need to then kind of that next more sophisticated step is we understand that they're saying they don't like this or that they're saying that they'd like this. Can they affirm it, somehow? Can they show us their agreement? Can we make sure that we are correctly understanding them? And build in some safeguards to make sure that we are putting tools in place for them to tell us if we're getting that right. And then one of the next steps is, okay, so we understand what you like and we know what we don't like, but we need more details. We need to be able to elaborate on our preferences and describe them. Or they, they're really in danger of having them be oversimplified, right? If I, for example, can tell you that my daughter really loves swimming, I know that she really likes swimming. But if I can't elaborate and describe that, then we could build in a structure where she go swimming at the YMCA twice a week without understanding that chlorine pools are actually much more challenging.

Erin: An indoor pools are actually much more challenging and much more difficult and can be really overstimulating because of the acoustics and the smells and that there's certain people we like to swim with and activities we like to do when swimming. Right. And we need to figure out how to elaborate on those and describe them or we risk saying because we know the person likes this, we're going to put this into place, but they're not really going to have as much choice and control over it as they could. Ideally, we support people to be able to compare their options and begin to rank their preferences because comparing things is actually a really important step of decision making. You know, if we ask someone what do you want to be when you grow up, what kind of job do you want to have? How do you want to contribute? There might be a hundred things that we want to do. We need to find out what they really want to do, what they most wants to do. And really a decision making is being able to compare different options and then select one. And so, I'm going to show you strategies for all of these including strategies for how we can expand someone's authority.

Erin: So, from what I can tell, my best guess is that autonomy starts with supporting people to express their preferences and their opinions. And the more clearly that they can express their preferences and opinions, the more that we can rank their preferences, understand what they'd really like, understand what's absolutely non-negotiable to them, understand what they really don't like and what is nonnegotiable that cannot happen to them as opposed to what sort of myth. That's fine. We can take these preferences and opinions and help us understand what's really working for them and what's not working for them. What do we need to problem solve? What do we need to change? And we can ask more about what's really important to this person to make sure that we're building this into their life. So, you saw my little stair step of how I think we tend to think of autonomy is something that we kind of earn our way to.

Erin: And what I want us to think about is how can we actually support a person's autonomy no matter how they communicate, no matter how early they are in their communication abilities. That you might be extremely emergent, that's just a term we use in AAC field, extremely emergent where the way you communicate is entirely with your body and with kind of spontaneous reactions to things. We can support your autonomy at that stage. You might get to a point where you can select symbols on an AAC system, right? Most of our folks do. They can get to that point. We can support your autonomy there, that as you move across and kind of move through these different stages of getting into more and more specific ways of communicating, we can support your autonomy at each stage. The trick is that the earlier you are in your communication skills, the more you have to be interpreted by other people.

Erin: And so, it's really the structures we put in place for how you're interpreted, that is the most likely to move you through these different stages because getting to the point where you can just use symbols and the alphabet to type a message, you don't need it. You need very little interpretation after that point. Right. So, that's really what we're trying to do is get people to a point where we don't have to guess as much. And what we can do is become a lot more strategic, you know, how we can guess. So, stage one, if we kind of think of different stages that sort of move us through here, I think stage one is supporting the person to express their likes, their dislikes, their opinions. That's the person. It's also supporting everyone else. We can call all of us their communication partners, their community, their family, how to be consistent in how we understand that person when they're expressing preferences and how we act upon the person's preferences. And the most useful tool to help us do this as a communication chart.

Erin: Now, I used to think that a communication chart like this, any of you guys for speech pathologists have already seen this before. A lot of you have seen this if you've done person centered planning. A communication chart says kind of at this time when this happens, when the person does this, we think it means this and we need to do that. And so, a classic example with my own daughter is when everyone's been quiet and seated like in class, or she's actually here with me and we're in Maryland at a course, everyone's quite and seated. When everyone stands up, she alerts and looks around and often starts doing this or she starts doing this. And when this happens, we think when she's doing this, we think it means that she's trying to figure out what's happening next. We think it expresses some confusion, but also some curiosity.

Erin: This seems to be more about confusion and this seems to be more about anxiety that she's trying. She doesn't understand what's going to be expected of her. And so what we need to do is use her AAC and explain what's going to happen next. So, it's called the communication chart. There's a lot of examples. And I used to think that these were only for people who couldn't communicate in another way, but when I did a series of interviews with adults who can type any word they want to communicate any message, they just don't rely on speech, what I heard was even though they can type any message, they feel frequently misunderstood. And when I talked with some of them about communication charts, they're reactions was kind of like, "Where has this been all my life?" But some of them even started writing up their own communication charts to hand them out to friends and coworkers and colleagues because there were often things that they were doing that were being misunderstood and that were kind of difficult to explain.

Erin: And so, regardless where someone's at, they might really benefit from [inaudible] chart. If any of you have intimate partners or parents or anybody like that, you might find that there's times when you kind of wish there was a communication chart that said, you know, when mom enters the kitchen and sighs because all of the recycling is still on the counters and nobody's managed to put it in the bins, we think it means that she's frustrated that we haven't been sorting our own recycling and that what we all need to do is make sure that after we empty a milk carton that we put it in the recycling bin. That kind of thing. Right? So, all of us can use a little bit of support with making sure we're understood. When my own daughter Maggie was very little, we, I had a very detailed communication chart for her because of the number of times and ways that she was misunderstood.

Erin: So for example, when she was two, I went into her day care center and she had been barricaded in the corner. And when I asked, "Why? What's going on?" They said she had bit someone and she was frantically biting anything she could get. And we didn't figure out what had happened until I opened up her lunch box and she had never been fed. So, someone had left sick that day. Someone else had taken over and in the mix of people coming and going, she had never been fed. And I realized it actually needs to be written down that if she bites someone she might be very hungry and you need to feed her. So, this is kind of what her very earliest communication chart look like. And at this point when she had these very early ones, she was experiencing medical issues like epilepsy and pain from reflux and migraines that were very easy to misunderstand.

Erin: And so, it was a very long and detailed communication chart. But there's a of examples out there. These are, I think most of these examples are from Helen Sanderson Associates, which is that person center planning organization. And you can be completely verbal but still really benefit from having communication charts that just help make sure that everyone is interpreting you in a consistent way. And the reason that I focus on consistent interpretation is that our folks, for them to go from communicating more spontaneously to communicating in a much, in a more consistent way, they need all of us to be consistently interpreting them. If sometimes we get it and sometimes we don't, then they're not experiencing a lot of success. And it's really hard to stay motivated and key trying to make all the rest of y'all understand what it is that I'm trying to say.

Erin: And so, the more that we build in consistent structures for how we hear and understand the person, the more experience that they have with being successfully understood and it just make, it just provides the foundation for them to communicate more. So, you know, Maggie's communication chart at this age now that she's a teenager and is just so much more [inaudible] in a lot of her communication sets this up. So, really what I think about in communication charts is wherever someone is being misunderstood, we need to build a communication chart for them and we can support them to express their preferences in a lot of ways. I really discourage all of us from asking questions, "Are you frustrated?", "Are you angry?", "Are you, do you want this?" That life to a non-speaking person can feel like a constant interrogation. And so, we can just invite the expression of preferences using declarative statements rather than questions.

Erin: So, a declarative statement is, "I think you like that." I'm stating the obvious, I'm just stating what I see and I'm also mapping language onto what you're doing. So, if you're someone at an early language level, I'm going to give you the words that explain what's happening and that will help you develop more of the internal language and then be able to express the language. And we'll use strategies like verbal referencing. So, "You're laughing, I think you like that." I'm referencing with my words and what it is you're doing. And I'm going to use strategies like AAC modeling, right? So, where it says in all capitals LIKE then I might model the word "like" on their communication system or in a pod book more to say I like that and go into that. So, you know, follow that through to be able to show the person, here's how I'm understanding you.

Erin: And here's how you could actually say it more symbolically if I'm getting it wrong. And what that's also doing is teaching the person to understand why we think that they're communicating what they're communicating. And we're teaching them how we're interpreting them. "If I get it wrong, maybe you're laughing because you think this is really boring and stupid", and you're laughing. And if I say, "Oh, you're laughing. I think you like that", then I'm actually giving you information and you can use that information over time to go, "I better not laugh at this because everybody misunderstands me when I do." And so, we're helping them to self-govern we're helping them to change their own behavior in response to how we interpret them. But if we don't use verbal referencing, then they don't understand why when they're laughing and discomfort and we did black with them and don't do anything about it, what it is that's happening.

Erin: And number of people with disabilities have said, I can't see my own face. So, I don't know what my face is doing that makes you react the way you are. With verbal referencing we can tell them, "Here's what your body is doing, here's what your face is doing that's making me think what it is that I'm interpreting." And so, we're just providing a tool for them to be able to shape how they're being interpreted by them, by us. I hope that makes sense. The next stage is we're using verbal referencing. We're saying, we're telling them what I think you're communicating. We're creating a space for them to start to correct us. Right? So, this is kind of affirming and denying, creating a space for them to be able to say, "Yes. You're actually understanding me" or space to say, "No. When I'm laughing like that, I'm actually trying to tell you something else."

Erin: We're using the strategies and now creating an invitation for them to let us know if we got it right. And we can use this in a lot of ways, right? So, if we're supporting a person to, with personal care, if we're supporting a person to eat, we can say, we can invite them to tell us to affirm or deny whether we even did a good job, right? And we can teach them from the very beginning that your right to support is your right and your right to support on your own terms as your right. And I'm going to create space that invites you to let me know if I'm doing it well or not. And that's a strategy we can use through all of these. So, we're going to invite a response. So, if I say, "Oh, you like that, you know, you're laughing. I really think you'd like that."

Erin: And you look at me with that kind of a shared smile, I can say, "Oh, you're nodding and smiling. I think I got that right." And help teach them, "Here's how you can let me know whether I got it right or not." Well, one of our tricks, one of the things I see, the pitfalls that I see as falling into is we try to reduce things to limited choices or to false choices. And we set people up to think that rather than affirm or deny it's what we're doing is expecting that they can just make a choice and that because they made a choice that therefore they had autonomy. It's not really a choice if we haven't listed all of the options. So for example, if I say to you, "Hey, it's lunch time. Do you want a ham sandwich or a turkey sandwich?"

Erin: It's not a real choice if you choose a ham sandwich, that's a selection you selected from a field of two. But it's not a real choice if what you really wanted was something else. It's definitely not a choice if you're a vegetarian and the only things you're being offered are to meet options. If you refuse to make a choice, it's really easy for all the speaking people to go, "She doesn't understand choice-making yet." When in fact, what you wanted was something that wasn't actually offered to you. So, we really have to be clear on what is an authentic choice. It's only a choice if you can ask for something that wasn't offered to you. If you're choosing between what's been offered to you, then that's a selection, right? If you go to a restaurant, you look at a menu, you select from the menu, but it's not a real choice unless you got to choose the restaurant.

Erin: If you got to choose the framework within which you would be making that choice, it's only a choice if you can choose to say, "No. None of these." It's only a choice if you can say, "Ah, something different." It's only choice if you can say, "Yeah, I think I want a ham sandwich, but tell me more about it." Or "Yeah, I want to have a sandwich, but I want it on a rye and with mustard and no tomato", right? If you've got more choice and control over how you want it. So, it's only a choice and it's only autonomy if it's on your own terms. So, if you've got someone, for example, who really only expresses a preference between things, if you hold up two options, then what we want to introduce is here's one option and here's something different. It might just be a single symbol.

Erin: It can actually be anything, but it just stands for the concept of different, and I can say, "Do you want a ham sandwich or do you want something different?" "No, you're not looking at the ham sandwich. I think you want something different." "So, here's a turkey sandwich. Do you want a turkey sandwich or do you want something different?" "You're not looking at the turkey sandwich. I think maybe you want something different. What else do we have? We've got a pasta salad. Do you want the pasta salad or do you want something different?" And then maybe that's it and we can say, "I'm sorry. That's all we have. I don't have anything else different. These are the three options we have." That's one way that we can build real choice and control into choice making is make sure that every time we ask someone to make a choice, we're giving them the option of something different.

Erin: If the person can choose from a bigger field, then maybe we've got the ham sandwich and the turkey sandwich and something different. And tell me more. So, let me tell you more about each of these. I don't see you making a choice between them. So, let me tell you more about them. The ham sandwich is like this, the turkey sandwich is like this. Or I can tell you what would the other options are. We might use the same framework for thinking about what classes we want to enroll in the fall, or which friends we want to invite over for an activity, or which movie we want to go see. But what we, the real key is making sure that we're not creating this false choice of "Do you want to watch Spiderman or Black Panther" without providing the option of something different. And I created this as, this was just a laminated, like a table mat.

Erin: That we were using with one girl just to prompt the people around her to make sure that they were always offering authentic choices. And she wanted the word "but" because she was being put in a position of making choices, like, "Do you want to go swimming with your mother or do you want to go to Nana's?" And she wanted to be able to say, "I want to go swimming but only if my sister's also coming or if my sister's not coming." Or "I want to go to Nana's, but only mom's coming too." And she was really struggling and just demonstrating a lot of behaviors cause she wasn't being understood, that she wanted to put conditions on the choice. And so, we introduced the symbol for "but". And that was just a prompt now for her team to get her family to get out of her communication system and try to figure out what were the conditions that she was trying to put on the choice in order to have more choice and control over it.

Erin: So, when we get people to, when we're trying to get them to affirm or deny, one of our real tricks is we have to avoid interrogation. We don't want to keep making them repeat themselves. It's like, "So, do you want to go swimming or do something different? Oh, you want to go swimming? Say, yes you want to go swimming. You want to go to swimming?" We can just focus on making declarative statements at that point. "You've chosen swimming and you want to go swimming? Oh, you're looking at me. Okay, I think you want to go." It doesn't have to be incredibly formal, but we need to teach them that I'm interpreting you and you are in a position to give me feedback on whether I'm doing a good job on that and whether or not you actually feel understood. And some ways that we can better support that is use their communication system, make sure they have ways in their system to say things like, "I don't understand "or "You don't understand or that isn't what I meant."

Erin: That they need these messages in their system and they need us to use them for us to say, "I don't understand. I can tell something's wrong, but I don't understand what it is. Maybe it's this. You're not looking at me. Maybe it's this. I heard your voice. You used your voice. Okay. So, maybe this is what's wrong. It's too noisy. Do you understand that? Did I get that right? You're looking at me, you're looking at, I think I got that right. That something's wrong is too noisy. Right?" And we're modeling ways that they can help us understand whether we're understanding them or not, whether they're being correctly interpreted. The next stage is, so I'm not suggesting that we start all this right away with someone who's very early in language, but just be thinking of kind of a roadmap to move people along to more autonomy is teaching folks to provide a response, really inviting them to respond in a way that expands with a why.

Erin: "So, I hear your voice, I see you're upset. Something's wrong. You're turning away. You're covering your ears. I think it's too noisy, right? So, I'm helping you understand how you can communicate that something's wrong, you don't like this and it's too noisy." Or "I see you smiling and reaching. Wow, I really think you liked this a lot." And I'm providing some of the language that helps you expand, but it's not just that you like sandwiches or cookies or Spiderman that you like it a lot. And how mean this language, being able to be more specific and to expand on your message helps you go from being someone who likes swimming to a swimmer or someone who likes course spec writing to being a writer or someone who likes Spiderman to being a fan, a marvel fan. Right? It's the more that people can expand on their message and start to explain what they like a lot versus just a little helps us understand what is it about them uniquely that really makes them a whole person, right?

Erin: A person with their own interests and opinions and roles. You know, such as the role of being a marvel comic fan, like half of us have become with all the latest movies out there. And one of the tools that can help us do this is think about a receptive communication chart. I often see teams where they've developed different strategies for expressive, right? That's that first communication chart I showed you, when Maggie does this, we think it means this and what we should do is this. A receptive communication chart makes sure that we are planning, that we're putting enough energy into making sure that the person understands us and we're not just putting the burden of understanding on them. So, when we want to tell the person something, how do we do this and what are the technologies or tools we use to make sure that they understand us?

Erin: And this is particularly important with anyone who we think is struggling with comprehending speech. There's a number of reasons of sensory processing reasons, auditory processing reasons, intellectual disability, all kinds of things can make it harder to understand speech, particularly because speech is so, just so fleeting, right? It comes and goes so quick. If you didn't catch the word the moment it was spoken, then you missed it. And so, we can make sure that we've got consistent structures in place so that everyone knows how to communicate in a way that helps the person understand us. So, this is just an example of a communication chart, a receptive communication chart from Helen Sanderson Associates. When we want to let Kyle know that it's time to get up, here's how we do it. We knock on his bedroom door and then we open it. That kind of thing.

Erin: So, just take the time with your school team, with your support team, with your family to make sure that we all have a consistent way of making sure that the world makes more sense to this person and that we're building in structures for them to understand more abstract things that happen. So for example, with my own daughter was all of her sensory processing issues, I think it's very difficult for her to be a body emotion on her way to do something and then have to process language while already walking and thinking about something else. We had, you know, just one incident we had, she was riding the bus everyday to school, the regular city bus, and I was riding the bus with her. And there'd been construction on our street and our bus stop had moved and I hadn't warned her about it.

Erin: And so, we're trying to walk down to the bus stop and I realize the bus stop has moved. I hadn't warned her. She was so bound and determined. She knew exactly where she was going. She knew how to get there and all she could comprehend at that moment was that I was trying to stop her from getting to the bus. I was trying to explain, "No, the bus stop has been moved and we need to go." But in that moment it was just really difficult for her to process language. And the bus ended up coming and missed us went on because we weren't in either stop. She burst into tears. I burst into tears. I hadn't been able to explain this fairly abstract idea. And so, what we know is that to make sure that Maggie really understand something that abstract, we need to tell her ahead of time whenever possible.

Erin: Tell her ahead of time. Ideally tell her when she seated and she's not trying to organize her body to go do something else. Use her AAC, use her high-tech AAC so that she has visuals, right? She can see the symbols moving across that "I'm telling you something, it's happening right now. There's been a change or something different, right? I need you to listen to me and see this." And then use partner assisted scanning to make sure that she understands, which is like, "Okay, did you understand that? So, we're going to go somewhere else. Are you ready to go? Are you ready to go or go somewhere different?" That kind of thing. When it's things like she needs to make an important choice, like what courses she's going to take in high school in the fall, it's a false choice. If we just sit her down and say, "Do you want to take drama or do want to take music or you want to take social studies?" That is a false choice because she needs weeks to think about that kind of thing.

Erin: She might need to visit the different classrooms. We probably need to record some kind of video of what each of those abstracts choices look like and we need to review them frequently over several weeks so that maybe a month after we started the process of course selection, she's really had all the information that she needs to understand what her options are, understand where her choices are for us to do things like use verbal referencing and modeling when she's watching the videos of her different options to say, "Oh, I think you really liked drama. You know, I think we know from your past experience of drama you really liked drama. I'm looking at you, you're watching the history lesson. You don't seem interested. I don't think you like that. I don't think that's the class you want to take. Let's see what our other class options are." That kind of stuff.

Erin: So, it's just making sure we have a consistent and thoughtful and strategic way of making sure that the other person understands the options that we're putting in front of them rather than creating these false choice things where we're just like, "Oh no!" We asked her what question she want to take, she touched that picture, therefore we're all going to assume that that was really her decision. One of the next stages, the second to the last is introducing the concept of ranking. That all of us have things we really, really like. Things that are completely non negotiable. They're just very important to us. For me, waking up in the morning and having espresso. To help wake me up that I actually started with black tea, a cup of black tea, and then I move on to espresso that's really important to me that it's not a good life if I don't get to have that.

Erin: I also, I mean I like tea, tea's good, that's not as important to me, but that's actually a really important routine. When we have access to language, like most and least or worst and best or favorite or love versus like and meh and okay, then we can start to communicate so much more nuance about what's really important to us, what we really like and don't like. And so, we need to use that language and introduced structures to help people use that language as they're thinking about what's working for them. And so, you know, it can be as simple as teaching, "What do you think, what did you think of that movie? Was that a thumbs up? Was that okay or was that a thumbs down? What did you think of how I supported you at meal time? Do I get a thumbs up or was I just okay?"

Erin: We can, if we introduce this, if we introduce these kinds of structures where we're asking folks to respond and rank and critique, then we are creating a situation where they expect to give their opinion on they're being supported. And we can get to a point where maybe we started out in kindergarten where we were talking about "Did you really like dinner or was it just okay?" To as an adult, "Do you really like the support person or are they just okay?" And be able to take that information to understand who should be supporting them and when and which activities are the most important to them. And there's a lot of ways that we can do it, but what's, the structure that's, you'll see me talk about talking maps in a minute where I'm kind of stealing this from, the structure that seems to make sense is choose a topic like classes in school.

Erin: And now choose what it is we're ranking, what are the classes we really like in the classes we don't like in the classes that are okay. Or what are the classes or activities that are really working for me and what's not working for me and what's just sort of okay. And always provided in the same structure that this sort of the positive, the like is always on the same side and then not like as over here. The working is here and the negative is here. Always providing that same structure so that we have a routine for how we choose a topic. And then we think about how to rank and we can use photographs. We can use symbols to say, you know, "So, what do you think of this class? Do you like this class? Is it just okay? Do you not like this class?"

Erin: We can use verbal referencing. "I think you really like drama because I see how you smile and run into the classroom. I don't think you like gym as much because you stand at the doorway, right?" So, we can move these away around and show them why we're interpreting that this is something they really like and this is something they don't like. And we're creating, even if we're only modeling this and they're not participating in it, we're creating a structure for them to go, "Oh, the fact that I hesitate at the door going into gym is making them think that I don't like gym when in fact I'm really just trying to organize my body because I'm excited about gym." And it just gives them some information and it starts to give them a way to be able to correct us and be like, "No, I actually like gym. I'm just being misunderstood when I express it."

Erin: So it's just thinking about structures and thinking about language that allows people to really express nuance in the things that they like. And I'm not going to, I have a video here but I'm not going to show it right now. If you just Google talking, that's on YouTube, you can see it just a very formal process. It assumes people are symbolic that they can use visual symbols, it assumes that they're at a point where they can use the paths up to ranking. It's a very evidence-based process for involving people in decision making. And what I think we can do for our folks who are more emergent than that is take that structure and teach it rather than waiting for people to get to that point before we use it.

Erin: And what you'll see with the talking maps approach is just what I talked about a slight ago, that there's always a topic that we introduced this very familiar routine, develop a routine of when we're choosing, when we're talking about something and whether you like it or not and whether it's working for you or not, we always use this same routine. So, here's our topic, here's our ranking system. Whether you know, "Yes, I like this", "No I don't" or "Sometimes I like it" and we're going to move images around to be able to indicate what we thought about them. So, last stage that we can think about is how we're really expanding somebody's authority and their right to make more decisions that were really protecting their right to make more decisions. And one of the tools that can help us do this is a decision making profile.

Erin: And what a decision making profile is, is just a consistent structure for how we support the person to express decisions. And again, this is a tool from Helen Sanderson Associates. So, we think about, it can be what we know about the person that inviting them to respond as much as possible. How do, oh, I don't know what just happen. Hold on, I think I just lost my shared screen. It appears that my keynote suddenly crashed. So, hold on. I now reload it. No idea what happened there. But it's just a structure to be thinking about what is this person showing us that they need in order to really participate in decisions so that we put that structure into place every time we ask them to be involved in a decision. Now hopefully this is working and your now seeing my screen again. Sorry about that. So, it's just, if the person is very emergent and they're not yet using symbols and words to help us understand this, then this is us using our best guests. Here's what we think so far. And I don't know why, I'm sorry, but my keynote is crushing and it just crushed again.

Erin: I am going to wrap this up and move us onto questions. I'll just talk through what that last slide was because I don't understand what my computer is doing. But the last tool I was going to show you is called a decision making agreement. And what a decision making agreement does is we built this profile of what we understand the person needs, they need a lot of time, right? That's usually one of the most essential thing. They need a lot of time to be able to consider their options. They need visuals. They might need to go personally experience something. They might need video. They might need, they might be best at making decisions in the morning, right? Or they might be best at making decisions on the evening. They might just depending on their biology and their own kind of cycles, you know. Just, you can imagine how any of us would feel at 6:00 AM and we've just woken up.

Erin: If somebody asked us to make a really big decision, we'd probably say, "Come back to me after I've had my coffee." And that's really what a decision making profile is meant to be. And then our next goal is to put a decision making agreement into place. I'm going to try to not actually put play on my keynote. I'm just going to try to show it to you this way and see if that helps. A decision making agreement means we have taken an inventory of all of the decisions that we're making for this person and that they're making. We've kind of listed what are these important decisions. For some people it's really important to their quality of life to be able to choose what they eat today or whether they take a bath and when they take a bath or whether they take a bath or a shower and what they wear. And other people, we all know people who could care less what they were on any given day, right?

Erin: So, we're trying to figure out what are the decisions that this person has shown us are important to them. And we're going to be structured about how we agree that they must be involved. And we're going to be really clear about who has the final decision making authority. And what we're thinking about is that as the person grows older and becomes an adult, we're gonna keep trying to shift that final decision making authority to them as much as possible. So, here's just a really simple version of the decision making agreement. This is for my own daughter Maggie. One of the things that we realized was really important to her all the way back by late elementary school was having the right to decide whether to enter a room or whether to leave a room, that she was experiencing a lot of anxiety if she felt she was trapped in a space and didn't have the right to leave.

Erin: And so, we agreed that she had the right at school to stay in a room or to leave a ,room. And we put this in place in part because we felt it was important for her safety that she needed to learn from a very young age. That she always had the right to say, "I'm leaving. This isn't working for me and I'm going." And so, how does she decide that she's going to enter a room or leave everything? She votes with her feet. She would just get up and go. How are we going to respond? We're going to invite her to stay and encourage her to stay cause we really want her to be part of it. And then we're going to offer choices of where she can go because she has the right to leave the room, but that doesn't mean has a right to go anywhere she wants to.

Erin: And so, it's just having a formal structure for how we deal with these things. As she's gotten older, she's weighed in on things like her placement. She found a class at school that moved at a slower pace and that had other students who were non-speaking who were using technology to communicate. It wasn't an inclusive classroom, but she made it very clear that she wanted to spend at least part of her day in that classroom, that she wanted to be with other non-speaking people. And so, we had to take that input. Now I don't allow her to decide what her placement at school is. I'm her mother and I actually get to make that decision. But here's how she gives input and here's how we hear from her about whether her placements were working and here's how we negotiate that. So, decision making agreements can be about anything from what we were or where we're going to go or how we spend our money, but it's just putting a more formal structure into place and it's about constantly asking is there a way that we can move more choice in control to the person themselves.

Erin: So, I'm going to leave it there cause we are up for time. I'm just going to show you three, the ideas that we talked about here are actually written up as articles that you can read and share. If you go to this AssistiveWare website, I, like I said, I worked for a AssistiveWare and I create materials for families and educators and speech pathologists. If you go to the Learn AAC section of the AssistiveWare website and you look under the section called AAC for everyone. There's a list of articles that are around the themes of autonomy, advocacy and safety and so you can see a lot of these there.

Genia: I hope that you found this helpful. All of the resources that Erin mentioned are included in the show notes at goodthingsinlife.org/031. If you're interested in learning more from Erin, then sign up for her upcoming live free online presentation titled Creating a positive student experience for Maggie using role theory. Focusing on the role of student has allowed Erin to understand her daughter Maggie in more complex ways. It's changed your priorities and made her a more effective advocate. Understanding the rule of students has meant that as her mother, Erin can work with school teams and in their home to maximize Maggie being accepted for who she is as an individual and also as a student. This is created authentic opportunities for friendship for Maggie and a more meaningful education. In this presentation, Erin will explain what and how she implemented role theory and supporting Maggie to be a successful student in their community school.

Genia: This presentation promises to offer actionable, practical insights into how you can do the same. Interested? Go to goodthingsinlife.org/august7. That's goodthingsinlife.org/august7. Can't attend live? No worries. I'll send you the replay if you register. Now, next week's episode is a little bit different. I'm speaking with Andrea Askowitz, author and writing instructor about the power of storytelling in advocacy. Andrea and I get pretty honest and raw. It includes some adult language and content so have your ear buds handy next week. Until then, have an excellent week. And I hope to see you on August 7th at Erin's presentation. Take care.

To get an email about new podcasts so that you never miss an episode sign up here.

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Special thanks to Erin Sheldon for joining me this week. Until next time!

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Using AAC as a tool for self-determination and supported decision making

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Many people who cannot rely on words to speak struggle to be understood. Loved ones and support people often do their best to apply what they know of the person's preferences to the planning process, but may fall short because they lack a direct way to ask the person what they think.

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International Society for Augmentative and Alternative Communication (ISAAC)

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A Discussion of Empowering  Autonomy and Self in Individuals with AAC Needs

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Self-determination is a life changer for the person and a game changer for the system. At its core is the revolutionary idea that people with disabilities are in charge of their own lives, not the professionals or systems that support them. We believe that self-determination will not only encourage individuals and families to "think outside the box" about the kinds of lives they could lead, but it will also stimulate discussion on how the traditional system can become more person- centered and provide more choice and control for the people they serve.

The Principles of Self-Determination

Freedom, which includes the ability of adults with developmental disabilities to exercise the same rights as all citizens; to establish, with freely chosen supporters, family and friends, where they want to live, with whom they want to live, how their time will be occupied, and who supports them; and, for families, to have the freedom to receive unbiased assistance of their own choosing when developing a plan and to select all personnel and supports to further the life goals of a minor child.

Authority, which includes the ability of a person with a disability, or family, to control a certain sum of dollars in order to purchase services and supports of their choosing.

Support, which includes the ability to arrange resources and personnel, both formal and informal, that will assist a person with a disability to live a life in his or her community that is rich in community participation and contributions.

Responsibility, which includes the ability of participants to take responsibility for decisions in their own lives and to be accountable for the use of public dollars, and to accept a valued role in their community through, for example, competitive employment, organizational affiliations, spiritual development, and general caring of others in their community.

Confirmation, which includes confirmation of the critical role of participants and their families in making decisions in their own lives and designing and operating the system that they rely on.

The Story of California's Self-Determination Law

In 2012, six ordinary people met and did an extraordinary thing. While at a restaurant across from the Burbank Airport, they sketched out a plan on the back of a napkin to pass a law for self-determination to ensure freedom, authority and choice to individuals with developmental disabilities. The six people included Judy Mark and Connie Lapin, parents and co-chairs of Government Relations of the Autism Society of Los Angeles; Michal Clark, parent and then executive director of a regional center that was part of the self- determination pilot project; Marnie Clark, self advocate; Harvey Lapin, parent and longtime disability activist; and Catherine Blakemore, Executive Director of Disability Rights California.

The six agreed that the developmental services system was broken and that change was needed. They were aware that the federal government, through its funding of community Medicaid services, was moving the states towards person-centered service models that allowed consumers more choice and control. Although California had a successful self-determination pilot program that began in 1998, attempts to pass legislation to expand this program had not yet been achieved.

The initial six formed "The Dream Team" but were soon joined by Allen Erenbaum, parent and attorney; April Lopez, parent and member of the State Council on Developmental Disabilities, Mark Polit, parent and SEIU staff, and Cathay Liu, parent and service broker in the pilot. There was clear agreement that the program would be voluntary and statewide, include diverse, underserved communities, and be open to all individuals with developmental disabilities served by regional centers. The team mobilized and went to work.

It was apparent that to succeed, a bipartisan effort was needed. In December 2012, Harvey Lapin

called Senator Bill Emmerson, a colleague in the dental profession, and asked him to have a conversation. Harvey and Connie met the Senator in his local district office in San Bernardino, where he readily agreed the plan was a significant bipartisan issue and offered to author the bill. Many wonderful legislators enthusiastically united over the effort and agreed to be co-authors, including Senator Jim Beall and Assemblymembers Bob Blumenfield, Wesley Chesbro and Holly Mitchell. The authors introduced Senate Bill 468.

Some groups thought that the bill had no chance of passage. But they underestimated the sheer will of the self-advocates and family members. No opposition challenged the bill as it moved through the Senate. SB 468 passed easily in the Senate Human Services Committee and unanimously on the Senate floor. As the bill moved into the California Assembly, however, those interested in keeping the status quo started to get active. No group ever officially came out in opposition to SB 468 - it would be politically incorrect to argue publicly against it - but some questioned the need for self- determination during a hearing in the Assembly Human Services Committee. Yet even those questions didn't damper the clear enthusiasm for the bill, and it passed without a single "no" vote.

The bill was then sent to the Appropriations Committee and put on "suspense," which means the cost of the program would have to be determined before moving forward. At that point, those wanting to maintain the status quo attempted some behind-the-scenes maneuvering and tried to make the case for a $6 million cost for the bill, which would have essentially killed it. But the authors and sponsors had compelling evidence - backed up by the Department of Developmental Services (DDS) - that the Self-Determination Program would actually bring in almost $3 million dollars a year in additional federal funds stemming from the match from the pilot participants. The bill passed unanimously out of the Appropriations Committee and on the Assembly floor.

It was then time to put pressure on Governor Brown to sign the bill. The Governor was known for vetoing bills with little explanation, so those same folks from the Burbank restaurant had one final hurdle. They reached out to thousands of self-advocates and family members to encourage them to let Governor Brown know the importance of self-determination to them. It was reported that the Governor's Office received more calls to sign Senate Bill 468 than any other health-related bill. Governor Jerry Brown signed this groundbreaking legislation into law on October 9, 2013. It was an incredible celebration for the disability community.

The credit for the passage of the Self-Determination Law must be shared with the hundreds of self-advocates and family members who made calls and wrote emails pushing for its passage, such as David Oster, a self-advocate who called the Governor multiple times every day. Great recognition must also be given to the tireless hours and commitment of Catherine Blakemore and Evelyn Abouhassan of DRC and the incredible guidance from DDS Director Terri Delgadillo. The disability community couldn't have asked for a better author than Senator Bill Emmerson, along with his amazing staff, Teresa Trujillo and Joe Parra, as well as other legislative staff who helped steer the bill, such as Mareva Brown, Peggy Collins, Lyn Shaw, and Sydney Kamlager. Also in

the legislature, the bill had essential support to push it over some significant hurdles from Assemblymember Mike Gatto, Dario Frommer, Bob Hertzberg, and Andrew Govenar.

Overview of California's Self-Determination Program

"The Dream Team" has remained passionately involved in the implementation of the law as members of the DDS Self-Determination Workgroup. The group began meeting in December 2013. It has often been a frustrating 5 1⁄2 years since the law was passed, but the Self-Determination Program is finally here! Unfortunately, none of the "Dream Team" members were selected for the phase-in of the program, but they remain committed to staying active. They want to ensure that the Self-Determination Program is successful so that, one day, their children, and every person with developmental disabilities in California, can benefit from freedom, choice and control over their lives.

California's Self-Determination Program (SDP) provides individuals with autism, cerebral palsy, epilepsy, intellectual disabilities, and other developmental disabilities and their families with more control and flexibility over the services and supports they need. Self-determination is a voluntary regional center program that provides participants with an individual budget, which they can use to purchase the services and supports they need to implement their person-centered plan (PCP) and Individual Program Plan (IPP). For example, participants and families may purchase services from traditional providers or local businesses, hire support workers directly, or negotiate unique arrangements with groups and individuals in their communities.

Eligibility
The SDP is based on a 20-year old pilot project in which almost 200 individuals participated in a test of self-determination in five regional centers. The pilot program has been a resounding success and, after many attempts, it is finally being expanded throughout California.

The Self-Determination Program will be phased in over three years. On October 1, 2018, DDS randomly selected the first 2,500 participants based on geographic and racial/ethnic diversity. On June 5, 2021, the program will be available to all eligible individuals on a voluntary basis with no limit on the number of participants.

To be eligible for the program, you or your family member must:
Implementation at Your Regional Center

Have a developmental disability and currently be receiving services from a California regional center OR be a new client of a regional center

Be over the age of three or, if under, be qualified for services through the Lanterman Act

Live in the community and have free choice in your life. You are not eligible if you live in a licensed long-term health care facility, unless you are using it to transition from that facility

Learn More about the Self-Determination Program

You can continue to participate in the Self-Determination Program even if you move to another regional center. If you voluntarily choose to leave the Self- Determination Program, you can go back into the traditional regional center system, but you cannot return to the SDP for at least twelve months.

Each regional center is required to have a Self-Determination Local Advisory Committee. They are responsible for oversight and monitoring progress of the Self-Determination Program and can make recommendations for improvement to DDS. They are mostly self-advocates and family members who are appointed by the regional centers and the regional offices of the State Council on Developmental Disabilities. The Clients' Rights Advocates of Disability Rights California are also a part of the committees. The committees' meetings must be put on the regional centers' websites, and everyone is welcome to attend. The local committees will be working with the regional centers to hold the orientations and ongoing trainings of the participants and the general community. The State Council on Developmental Disability also convenes a statewide advisory committee, made up of the chairs of the 21 local committees, to identify best practices, design effective training materials, and make recommendations for improvements in the Self-Determination Program.

Attend meetings of your regional center's Self-Determination Local Advisory Committee.

If you have been selected as a participant, you can start creating your person-centered plan before your orientation and hire an independent facilitator using regional center funds. Ask your service coordinator!

If you weren't selected as a participant in the first selection, there will be future random selections as some participants drop out of the program. If you didn't sign up for the lottery in the first round, you can be part of future random selections if you attend an informational meeting and have your name submitted.

Join the Disability Voices United's email list and Facebook page to find out about our activities and advocacy around the Self-Determination Program. Sign up at Disability Voices United.

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Self-determination is a life changer for the person and a game changer for the system. At its core is the revolutionary idea that people with disabilities are in charge of their own lives, not the professionals or systems that support them.

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The original Pragmatics Profile of Everyday Communication Skills in Children was written by Hazel Dewart and Susie Summers. This revised version has been created with the permission of NFER - Nelson. This Profile should be used with individuals who have used AAC in the past, are currently using AAC, or where you feel that an individual is using informal modes of AAC and you wish to introduce more formal methods.

This resource is free to download. There is one version which can be used in two ways:

1. Print & Fill - download, print and fill in by hand

2. Auto Entry - download and fill in electronically with Microsoft Word

To cite this work:
Martin, S., Small, K., and Stevens, R. 2024. The Pragmatics Profile for People who use AAC - Second Edition (First Published 26 Sep 2017). Available at: https://acecentre.org.uk/resources/pragmatics-profile-people-use-aac/.

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The Pragmatics Profile for People who use AAC | Ace Centre

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Ace Centre is a charity specialising in Augmentative and Alternative Communication (AAC) and Assistive Technology (AT). Free Advice Line 0800 080 3115

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TASH 2019: Communication Access is a Social Justice Issue

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TASH 2019: Communication Access is a Social Justice Issue

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Communication Access is a Social Justice Issue

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TASH Presentation Slides 2018: Research to Practice

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TASH Presentation Slides 2018: Research to Practice

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Communication Supports and Strategies:  Research to Practice!

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Businesses, organizations and government services in Canada are legally obliged to make their services accessible for all people who have disabilities. This section contains information for front line staff, managers and policy makers on ways to make their services accessible for people who have disabilities that affect their communication.

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Businesses, organizations and government services in Canada are legally obliged to make their services accessible for all people who have disabilities. This section contains information for front line staff, managers and policy makers on ways to make their services accessible for people who have disabilities that affect their communication.

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Check out Caroline's tips!

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TIPS

PRODUCTS

Check out the new products we have available.
Visit the page today!

PRESENTATIONS

Presentation Handouts available afterEvents ! (for a limited time)

Augmentative/Alternative Communication Intervention

Professional Development DVD's

Six DVDs are available to support your learning. DVDs include:

Six Professionally videotaped trainings (35 - 55 min) and Handout Study Guide

Get Yours Today! Visit Our Products Link.

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tools for communication with special needs kids

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TIPS PRODUCTS Check out the new products we have available. Visit the page today! PRESENTATIONS Presentation Handouts available afterEvents ! (for a limited time) Augmentative/Alternative Communication Intervention Six DVDs are available to support your learning. DVDs include: Six Professionally videotaped trainings (35 - 55 min) and Handout Study Guide Get Yours Today!

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Communication Supports and Strategies: Research to Practice

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What is supported decision-making?

It is a process to maximize and protect autonomy for people with a range of disabilities. First, it ensures that the person with a disability is deeply involved in decisions about their own life. Second, it recognizes that support to make decisions is natural. We consult with loved ones and colleagues, such as consulting with our partner before we accept a new job or getting a second opinion before a big purchase. What matters is that the final decision is our own. This drive for choice and control is a basic human right.

Presume competence

Supported decision-making is founded on the presumption of competence. In the field of communication, we sometimes think of this as "presume all people can learn to use AAC." This idea is incomplete. Presuming competence means that every person can express opinions and be supported to make their own decisions. It's not a skill: it is the quality of being human. It is not conditional.

Why is this important?

In the past, people who struggled with communication or cognition were considered incapable of making decisions. A substitute decision maker (e.g., a guardian) was appointed to make decisions for them. This substitute decision maker was expected to make decisions for the person in the person's own best interest. But deciding what is in someone's "best interest" can be complex and subjective.

Today, the United Nations and the disability rights movement have rejected the idea of substitute decision making. All over the world, people are moving away from substitute decision-making and towards supported decision-making. We ask what support the person needs to make their own decisions: it is a right.

Who might need supported decision-making?

Anyone who is at risk of being considered incapable to make their own decisions is a candidate for supported decision making.

Some people might struggle to understand information: they might need extra time and extra tools to stay focused and consider their options. They may need help to understand the consequences of different decisions.

Some people may need their choices to be presented as visuals: photos, drawings, or in a written list. Some people may be able to make important decisions some of the time, but not all of the time, such as someone with a mental illness or addiction.

What if the person cannot yet use AAC?

Supported decision-making understands that communication happens between two people. The responsibility to be understood should not be placed with the person with the communication disability; it is a shared responsibility. When a person has very significant communication disabilities and cannot yet communicate with words or symbols, it is their responsibility to express preferences, such as what they like or don't like. It is the responsibility of their communication partners to interpret this communication and act on it, to expand the person's choice and control. People who cannot yet communicate in words or symbols require the most support with decision-making.

Who supports the decision-making?

Parents, family members, friends, and trusted support staff come together with the person with a communication disability. They share their knowledge of how the person communicates and what support they need to make decisions. They form a circle or network.

For people with the most significant communication disabilities, research shows that the people who know them the most intimately are the most responsive to what that person expresses. These people are the most likely to take action to support the other person to have choice and control. They are also the most likely to interpret the person accurately. For example, less familiar people are more likely to interpret an unusual behaviour as "challenging," while someone who knows them better will interpret the same behaviour as distress, frustration, or an expression of pain and discomfort.

Specific tools and strategies for supported decision-making are explained in more detail in ' 3 Practical strategies to support choice and control for all people.'

Three examples of successful supported-decision making

Sara

Sara is new to her AAC. She uses it to make requests and to say the names of classmates or family members. When Sara is asked to select a friend to invite over to play after school, she tends to select the first option, or all of them, or to just agree with every option. Sara's mother doesn't think this reflects her daughter's true preferences. Instead, she has noticed that Sara shows much stronger preferences if they sit together and look at photos and videos of her school friends. Her mom models AAC messages such as "like", "love", and "best." After taking the time to talk about each friend, Sara clearly indicates which friend she wants to invite over. Sara's mom feels that these selections are more authentic. She sees that her daughter needs more time and support to express what is most important to her.

Daniel

Daniel loves his job at a local store. After receiving a promotion and a raise, Daniel decided to move out of his parent's home. He began looking for an apartment to rent. Daniel's parents worried he would be cheated by greedy landlords. They encouraged him to look at a variety of supported housing facilities where Daniel would have staff to help with meals, housekeeping, and budgeting. Daniel was frustrated that his family didn't trust him to live alone. Daniel used his AAC to reject their suggestions and insist he wanted to move out. Daniel's disability support worker introduced Daniel and his family to a supported decision-making process. Together, they identified:

what qualities Daniel is looking for in his new home,

what tasks he might need support with, and,

which decisions Daniel will make independently (such as how to spend his earnings), and which decisions Daniel will make in consultation with his parents (such as when to sign a lease on his new place).

In the end, Daniel decided to share an apartment with an old friend. He enjoys inviting his parents over for dinner at his place.

Anna

After Anna's stroke, she could no longer live independently at home without a lot of support. Her family members could not agree on next steps: Anna's sister wanted home care staff so Anna could stay in her own home. Her son wanted Anna to live in a nursing home with 24-hour care. Her daughter wanted to take Anna in to support and care for her. Anna could no longer speak, and she struggled to participate in these discussions. She became agitated whenever any of these options were discussed. The speech therapist introduced Anna and her children to a supported decision-making process to identify what was most important to Anna in her new home. Using photographs and line drawings, Anna showed interest in living in a social environment with other people her age. She prioritized this social interaction over staying in her own home. She wanted to visit with her children and grandchildren, but she did not want to live with them. Anna's family realized that none of their options were what Anna really wanted. Together, they found an assisted living home. Anna enjoys her regular visits with her daughter but is satisfied to return to her small, quiet bedroom. She participates in a range of activities and she enjoys the group meals with other seniors.

Links & References

AssistiveWare (2019). 3 Practical strategies to support choice and control for all people [Learn AAC article]

Carney, Bigby, & Douglas, (2018). Supported decision-making for adults with cognitive disabilities. International Journal of Law and Psychiatry: Volume 61, November-December 2018, Pages 64-75.

Center for Health Care Transition Improvement. Guardianship & Alternatives for Decision-Making. [Website]

Devi, Bickenbach, & Stucki, (2011). Moving from Substitute to Supported Decision-Making. Alter: Volume 5, Issue 4: October-December 2011, Pages 249-264.

The National Resource Center for Supported Decision-Making [Website]

The National Resource Center for Supported Decision-Making. EVERYONE has the right to make choices. [PDF - Brochure]

United Nations. United Nations guidance on Legal Capacity and Supported Decision-Making.

World Health Organization, (2011). World Report on Disability, 2011. [Endorses supported decision-making over substitute decision-making]

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Supported decision-making when you cannot speak - AssistiveWare

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Supported decision-making is a way to maximize the autonomy of people who need support to communicate. Discover how here.

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Access to Free Speech for All Act: Full Text

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Access to Free Speech for All Act: Full Text

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Ask Me, I'm an AAC user! (24 Hour Rule!) | Facebook

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This is a Group where AAC users are the authority on AAC and here AAC users, SLPs, support staff, doctors, parents, family, and others who are interested in AAC, can ask questions and get advice and...

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From TASH Communication for ALL 2017

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http://ryanduncanwood.net/

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Teaching Conceptually Referenced Core Vocabulary

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Teaching Conceptually Referenced Core Vocabulary

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Scaffolding Conversation for Early Communicators

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Scaffolding Conversation for Early Communicators

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Literacy Instruction (Light & McNaughton)

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Literacy Instruction (Light & McNaughton)

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Home :: Literacy Instruction for Individuals with Autism, Cerebral Palsy, Down Syndrome, and Other Disabilities

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Research-based guidelines for early intervention designed to maximize the language and communication development of young children with complex communication needs including those with autism, Down syndrome, cerebral palsy and multiple disabilities.

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Welcome to a new post in the School Year of Core Vocabulary Words series! Each of these posts, guest authored... [Read More...]

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Welcome to a new post in the School Year of Core Vocabulary Words series! Each of these posts, guest authored... [Read More...] How can we strengthen our AAC teams and position them to best serve individuals with complex communication needs? In today's... [Read More...]

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Alternative and augmentative communication gives voice to thousands of people who might not otherwise be heard. Supporting these communicators is a community effort, and requires collaboration between practitioners, family members, developers and, well, all of us!.

It's easy to get stuck in the same-old, same-old, but when that happens we miss opportunities to change the lives and support the growth and independence of AAC users. Every communicator, from part-time to full-time AAC use, can benefit from a fresh set of ideas. As part of that goal, CoughDrop is sponsoring a free conference June 25 - 26 from 12-6 ET each day which gives everyone connected to AAC the opportunity to refuel, increase understanding, and collaborate with others in order to strengthen the entire AAC community.

We invite you to take part in this AAC focused, online conference with sessions addressing a large variety of topics. The event will also include fun activities, inspirational stories, and even some fun surprises!

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Alternative and augmentative communication gives voice to thousands of people who might not otherwise be heard. Supporting these communicators is a community effort, and requires collaboration between practitioners, family members, developers and, well, all of us!.

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Home " Everybody Communicates: Toolkit for Accessing Communication Assessments, Funding, and Accommodations " Everybody Communicates: Toolkit for Accessing Communication Assessments, Funding, and Accommodations

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Everybody Communicates: Toolkit for Accessing Communication Assessments, Funding, and Accommodations

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Home " Everybody Communicates: Toolkit for Accessing Communication Assessments, Funding, and Accommodations " Everybody Communicates: Toolkit for Accessing Communication Assessments, Funding, and Accommodations

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A group for those that use Tobii Dynavox devices! This is not the official Tobii Dynavox group, but for parents and users of the device that want to meet, connect or talk to others who use these...

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People with any form of disability are more vulnerable to a range of abuses. They are particularly vulnerable to assault. According to the US Justice Department, people with disabilities are twice as likely as people without disabilities to experience sexual assault. People with developmental or intellectual disabilities are seven times more likely to be sexually abused than people without a developmental disability. Females are the most at-risk; women with developmental disabilities are 12 times more likely to be sexually assaulted than women without a developmental disability (NPR, 2018). The combination of communication and developmental disabilities significantly increases the risk of abuse: "the more severe the speech problem, the greater prevalence of sexual abuse." People who cannot rely on speech may be perceived by their assailants as a "low-risk, easy target" for abuse.

5 key factors that make AAC users more vulnerable

1. Power differential

Many people with disabilities require support with daily living. Many systems of providing support give more power to the care provider than the person receiving care. Nearly half of all physical and sexual abuse is committed by paid care providers. Family members are the next most common offenders. Just like in the general public, most sexual abuse is committed by people who know their victims well and have a personal relationship with them. All people are safest where the power differential is lowest. The power differential changes when AAC users have the power to direct, hire, and fire their support staff.

2. Physical isolation

Formal, paid disability support services have been identified in multiple studies and criminal justice statistics, as "a place of risk." (The Roeher Institute, 1994; NPR, 2018; Cadwallader et al, 2018) The third most frequent group of offenders against people with disabilities are other people with disabilities, "clustered with their victims" (Sobsey and Doe, 1991) in formal disability services setting like separate schools, classrooms, and care facilities. These separate settings often have fewer potential witnesses to report behaviors of concern from caregivers of from other clients. AAC provides more opportunities for more people to report abuse they experience or witness.

3. Smaller social network

Many people with disabilities have a small network of friends and family. Most of their interactions may be with support staff. AAC users are safest when they have a strong social network of people who know them well, see them often, and can effectively interpret subtle messages that something is wrong. AAC can strengthen and broaden a person's social networks, reducing their vulnerability.

4. Reduced choice and control

Many children and adults with disabilities are socialized to be compliant. This discourages them from speaking up when they don't like something. People with disabilities often have less choice and control over their lives, including where they go during the day and who provides their care. They often have reduced privacy. Person-centered planning and supported decision-making all maximize choice and control for the AAC user.

5. Reduced ability to report

Many AAC users only have access to the words and messages that others have provided and taught them to access. This can make it difficult for them to report abuse. AAC users may need to be explicitly taught and encouraged to refuse or say no. They should be encouraged to report on their satisfaction with the care they receive. All AAC users need access to the words that can describe abuse, such as words for private or sexual body parts.

Prevention and proactive attitude

There are a couple of strategies to prevent abuse and safeguard the AAC user.

Teach AAC users to speak up

The process of supported decision-making protects and supports the autonomy of people who are at risk of not being heard, such as people who are learning to use AAC. AAC users may need training and support to exercise their own autonomy, to make their own decisions, and to share them. They need to learn from experience that when they speak up or appear critical, this self-advocacy is valued and heard.

Teach AAC users how to refuse, reject, and say no. These are essential communication functions and are included in the Communication Bill of Rights. We can teach AAC users, by our example, that we value their communication about what they don't like or don't want.

Model consent with AAC users. Ask their permission before touching their AAC, their body, or providing support.

Teach supporters to interpret behaviour

AAC users, like many people with a disability, are at risk to be perceived as demonstrating "challenging behavior" when they assert themselves, try to express that something is wrong, or when they refuse to comply. Teach all those who support the AAC user to listen carefully to the potential meaning behind behaviors that may appear challenging. Aggression, avoidance, and withdrawal can all be possible symptoms of abuse. If an AAC user suddenly avoids people or places they once enjoyed, investigate what has changed.

Lou Brown, a legendary disability right advocate, summarized the research like this: "people with disabilities are safest in wide open spaces, with people who know them well, who have no power over them. They are most vulnerable in separate spaces, with people who have power over them, and no competent witnesses." Let's reduce the vulnerability and ensure the safety of all AAC users.

Links and References

Thornberry & Olson, (2005). The Abuse of Individuals with Developmental Disabilities, Developmental Disabilities Bulletin.

Shapiro, (2018). Special Series: Abused & Betrayed, National Public Radio.

Sheldon (2018). "Wide Open Spaces", IMPACT: Feature issue: Inclusive Education.

Fitzsimmons (2009). Combating violence & abuse of people with disabilities. Brookes Publishing.

World Health Organization, World Report on Disability, 2011.

Peckham (2007). The vulnerability and sexual abuse of people with learning disabilities. British Journal of Learning Disabilities.

Hughes, Bellis, Jones, Wood, Bates, Eckley, McCoy, Mikton, Shakespeare, & Officer, (2012). Prevalence and risk of violence against adults with disabilities: a systematic review and meta-analysis of observational studies. Lancet.

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Safe and secure: reduce vulnerability for nonspeaking people - AssistiveWare

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People with any form of disability are more vulnerable to a range of abuses. They are particularly vulnerable to assault. According to the US Justice Department, people with disabilities are twice as likely as people without disabilities to experience sexual assault.

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AAC and Literacy in Supported Employment

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AAC and Literacy in Supported Employment

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20 Years of Communication Intervention . . .

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20 Years of Communication Intervention . . .

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Putting People First (Technology and AAC)

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Putting People First (Technology and AAC)

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Erickson 2017 comprehensive literacy instruction

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A Supportive Communication Partner
© 2005 Paula Kluth

Open any textbook on autism or disability and you will find several pages and perhaps several chapters dedicated to improving the communication skills or capacities of students with autism. Less common, however, are pages and chapters dedicated to the necessary skills, attitudes, beliefs and abilities of his or her communication partner.

This paradigm or view of seeing "communication improvement" as a task for only one person in the communicative act is puzzling as communication is undoubtedly a social act. Therefore, supporting a student's communication involves more than engaging in an assessment or encouraging their participation in a small group discussion. Supporting communication also involves reflection, self-examination, and collaboration with each individual student. The following strategies may help any teacher, family member, or support person as they work to understand, listen to, and communicate with students with autism.

Don't Insist on Eye Contact

In schools, in the work place, and in society in general, eye contact is understood as a "tool" that aids communication. Unfortunately, many with autism find use of this "tool" irritating or even painful. This inability to use (or preference to avoid) eye contact can cause a myriad of problems for the individual with autism. Because eye contact is an expectation for most communication partners, those who do not use it may be seen as impolite, sneaky or distrustful, uninterested, or incapable of attending to a communication act.

Of course as many with autism will share, eye contact for these individuals is not related to listening or attention, except, of course, that avoiding it (for some) can increase their ability to listen or attend. Wendy Lawson (1998), who has Asperger's syndrome, claims that making eye contact with a speaker can make the interaction confusing and cause comprehension difficulties:

How much easier it it to hear someone if you can't see his or her face. Then words are pure and not distorted by grimaces and gestures. I can listen better to the tone of someone's voice when I am not confused by the unwritten words of their facial expressions. (Lawson, p. 97)

Jasmine Lee O'Neill (1999), another woman with autism, offers similar advice and insight about the use of eye contact:

Autistic people often glance out the sides of their eyes at objects or at other people. They have very acute peripheral vision and a memory for details that others miss. Gazing directly at people or animals is many times too overwhelming for the autistic one. (O'Neill, p. 26)

In fact, some individuals purposely avoid eve contact as a strategy for enhancing communication. As one man told me, "I can only participate effectively in conversation if I'm looking at the floor".

Consider Voice Volume and Tone

Any teacher can attest to the powers of the voice. When I taught high school, I often found that the best way to get the attention of a noisy room of teenagers was to sing. When I taught kindergarten, I often gave directions in a silly falsetto voice. Both of these variations in my voice caught students off guard and appeared to capture their interest.

Playing with voice volume, quality, and tone can be a tool in connecting with any student, including those with autism.

One variation in voice that seems unusually helpful is whispering. Many individuals autism and many parents of learners with autism have reported that whispering (Gerland, 1996; Gillingham, 2000) is a useful communication tool that can be used both for conversing and calming an individual. As a teacher, I often used whispers to give individual students directions or to reinforce key points. I also used it, however, whenever a child was struggling emotionally, physically, or behaviorally. Oftentimes students could be calmed by reassuring words shared in a hushed tone. Gunilla Gerland (1996), a woman with autism, indicates that whispers are extremely helpful in connecting with others: "[Unlike loud voices,] whispers came rushing at me from a long way off, always straight into my head, easily passing through all the passages in my ears, sliding directly up into my mind and rousing it. (Gerland, 1996, p. 31-32)

Experiment with Indirect Communication

Many individuals with autism feel uncomfortable having direct conversations or engaging in direct interactions (Williams, 1992; 1998). For example, I once worked with a student, Buddy, who hated to be greeted directly. If he happened to answer the door when I visited his house, he would often slam the door in my face or run directly into the bathroom and lock himself in. His behavior would change dramatically, however, if I avoided greeting him, looked at the floor, and handed him a card that read, "Hi Buddy". In these instances he would step aside, let me enter, and join me in the family dining room.

Donna Williams, a woman with autism, shares that she prefers to interact and socialize in ways that are more indirect or detached: "The best way I could have been given things would have been for them to be placed near me with no expectation of thanks and no waiting for a response. To expect a thank-you or a response was to alienate me from the item that prompted the response" (1992, p. 216). Williams (1998), suggests that teachers use costumes, foreign accents, conversation-songs, rhymes and puppets to cultivate interactions that "encourage expression in a way that allows some degree of personal distance". Williams suggests that these props and activities help students "develop self-awareness in a self-controlled and self-regulated way" (p. 306). Indeed, Junee Waites (2001), the mother of a man with autism, shared in her book, Smiling at the Shadows , that she couldn't get her son to engage in household routines until she sang to him. If she was sweeping the floor, for example, and wanted him to help, she would croon, "We're sweeping the floor, sweeping the floor!" Waites reported that she used this strategy across situations and environments and that it was wonderfully successful.

In addition to singing, there are a variety of other ways to make communication less direct. If a student does not want to read in front of the group, perhaps giving her a toy microphone or a special hat will give her the confidence and inspiration to do so. If a student does not like to answer peers who wish him a good morning, the entire class might say hello through handshakes, high-fives, or by learning greetings in other languages. Written communication (e-mail, communication cards) and gestures (sign language, holding up a hand to indicate "wait") can also be used for students preferring indirect communication.

Help Students Understand Language

Many students with autism have difficulties understanding some types of language. For instance, students may interpret language quite literally. I learned just how literal some students are when I took one of my students swimming. As Tom entered the pool area, he began walking straight for the deep end. I shouted at him to "turn around" as he got to the edge of the pool, thinking that he would know to turn his back to the water in order to climb down the metal ladder leading into the water. I was puzzled, but quickly understood when Tom began twirling in circles. He was "turning around" as I had asked.

Another young woman, Rio, had a difficult time hanging out in the school cafeteria because all of off her teenage peers spoke in slang. She often had to ask peers to "interpret" their conversations. On the suggestion of one of her homeroom classmates, she began keeping a diary of all of her translations and added to the volume whenever she encountered a new word or concept. While the diary began as a communication tool for Rio, it had the unintended benefit of bringing her closer to her peers; students often approached Rio to share new terms they had learned or to review the diary for language they themselves didn't understand.

Students with autism may need help interpreting figurative language like idioms (e.g., sitting on the fence, hold your horses), jokes or riddles, metaphors (e.g, he was on fire), phrases or slang expressions with double meaning, and sarcasm (e.g., saying, "good work" to someone who has just tripped). Teachers might offer support in the following ways:

Double-check with all students to make sure directions or questions are understood

Providing opportunities for students to learn about language (e.g., present a "metaphor of the week")

Use visuals help students remember the meanings of figurative language (e.g., draw a picture of an angry person literally "flying off" of a handle)

Encourage the student to keep a personal dictionary or encyclopedia of puzzling language, every time the individual is confused by a word or the use of a phrase, explain it and have them add it to their dictionary

References

Gerland, G. (1997). A real person: Life on the outside. Souvenir Press, London , UK

Gillingham , G. (2000). Autism: A new understanding. Edmonton , Canada : Tacit Publishing.

Lawson, W. (1998). Life behind glass. Philadelphia , PA : Jessica Kingsley.

O'Neill, J.L. (1999). Through the eyes of aliens: A book about autistic people. Philadelphia , PA : Jessica Kingsley.

Waites, J., & Swinbourne, H. (2001). Smiling at the shadows: A mother's journey through heartache and joy. New York : Harper Collins.

Williams, D. (1992). Nobody nowhere: The extraordinary biography of an autistic. New York : Avon .

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Permission is granted for non-commercial use of this article; you may copy and share with others. As a courtesy, please email me to share how it was used: pkluth@paulakluth.com. Please inquire before reprinting for a large group or for use in a newsletter or other publication.

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Paula Kluth - A Supportive Communication Partner

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A Supportive Communication Partner © 2005 Paula Kluth Open any textbook on autism or disability and you will find several pages and perhaps several chapters dedicated to improving the communication skills or capacities of students with autism. Less common, however, are pages and chapters dedicated to the necessary skills, attitudes, beliefs and abilities of his or her communication partner.

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The mission of the Communication Technology Education Center (CTEC) is to connect people of all abilities through augmentative & alternative communication (AAC), so that they can give voice to their own journey.

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Considerations for the Provision of Services to Bilingual Children Who Use Augmentative and Alternative Communication

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2. From Goals to Growth: The Essential Elements Of An AAC System
By Maureen Nevers, M.S., CCC-SLP, Licensed Speech-Language Pathologist, Augmentative Communication Consultant
This webinar introduces Maureen Nevers and helps families, caregivers and educators understand the components of an AAC system and learn specific practices to increase the quality of an AAC system.
Handouts: Goals to Growth presentation | Top Recommendations | Resources

3. Does Your App Measure Up? Evaluating AAC Supports
By Maureen Nevers
This webinar provides simple guidelines for participants to determine how well their current communication system matches the features of a robust communication system.
Handouts: Does Your App Measure Up? | Printable Materials

4. Aided Language Stimulation - Make It Interactive and FUN!
By Dr. Caroline Musselwhite, CCC-SLP
Introduces Dr. Musselwhite, who describes what aided language stimulation means and helsp families understand how modeling AAC systems can be FUN for the whole family! She explains why modeling language on children's communication systems is important, and how to model on devices, iPad apps or paper systems.
Handouts: Aided Language Webinar | Model Core Language

5. Ready, Set...: Your Toolbox to the Training Series
By Erin Sheldon
You have watched the beginning webinars and you have selected an AAC system: a system with plenty of vocabulary for all parts of speech to communicate a range of messages. You are ready to start modeling the system to provide aided language stimulation to your child.
Handouts: Ready, Set Handout

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2. From Goals to Growth: The Essential Elements Of An AAC System By Maureen Nevers, M.S., CCC-SLP, Licensed Speech-Language Pathologist, Augmentative Communication Consultant This webinar introduces Maureen Nevers and helps families, caregivers and educators understand the components of an AAC system and learn specific practices to increase the quality of an AAC system.

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Access to Free Speech for All Act: 1 Page

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Access to Free Speech for All Act: 1 Page

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This article describes simple tools and strategies to support every person to understand, compare and express their preferences as they make decisions. These strategies apply even if they are still learning to use words or Augmentative and Alternative Communication (AAC) to fully express themselves.

What does supported decision-making include?

In ' Real choices, real control: support for decision-making when you cannot speak ' we explain the process of supported decision-making. It aims to help AAC users to discover and share:

Who they are as an individual and what makes them unique;

What is important to them, what is not negotiable and what they prioritize in their life above all else;

Who they want help from to make decisions;

What communication partners need to know about how the person communicates so that they can respond in a way that is respectful and acted upon;

What support is needed so they fully understand the information and choices given to them;

What decisions they can make for themselves, and which decisions they need support with;

When they need this support, e.g. regularly and daily, or occasional?

Three steps

Supported decision-making focuses on giving a person more autonomy, i.e. choice and control. It can be divided into three steps: expressing preferences, prioritizing them, and taking action.

Step 1: Expressing preferences

Discovery

Supported decision-making starts with discovering how the person expresses what they like, don't like, and what is most important to them. This ensures the person is heard when they express preferences, positive or negative: I like this, I don't like that. Every person expresses preferences, but sometimes very subtly. The more subtle and unique a person is in their communication, the more likely it is that others will make decisions for them instead of with them.

Some people may not yet express preferences using words or AAC, but in other ways:

sounds and vocalizations, like a happy squeal for joy or a groan for discomfort

gestures, such as reaching for what they want or pushing away what they don't

facial expressions, such as a smile or grimace

body movements, such as turning towards/away from what interests/disinterests them, or walking away from an unpleasant environment.

How to increase expressions of preference

Maximize opportunities for the person to express preference across the day. Set goals that the person will express preferences (likes and dislikes) more times across the day. Ask the person to reflect on their different activities and experiences, indicating LIKE or NOT LIKE. Carefully observe the person in these activities: what were they expressing?

Support the person to become more transparent and consistent in how they express preferences. Use the person's AAC to describe how you interpreted their actions. Model what words they could use to express their preferences. "You laughed during the show, I think you LIKED it."

Keep a chart or log on what the person responded to so that it can be used to develop a more detailed profile of preferences.

Support more communication partners to interpret this behavior as an expression of preference. Tools include communication passports, gesture dictionaries, and communication charts.

Model the person's AAC to reflect what they are expressing: "I see your smile and I hear your laugh. I think you LIKE this. I THINK you LIKE this a LOT!"

Introduce a ranking scale. Model the use of a ranking scale when talking about preferred and non-preferred activities. Provide visuals to help the person indicate MOST and LEAST. A simple "thumbs up/thumbs down", or ranking 1, 2, or 3 stars, can help set priorities and clarify preferences.

Maximize opportunities to express preference and rank the options. The person with communication disabilities can be encouraged to regularly reflect on each part of their day. Ask them what they thought of different activities: if they LIKED it or NOT and what they liked MOST and LEAST.

Build the infrastructure that allows this person to understand, compare, and express choices. Create a framework, chart or other aid to support the decision-making and to document the choices.

Sara expresses preferences
During the school holiday concert, Sara fussed and covered her ears. Her support staff used Sara's AAC to model "I think you DO NOT LIKE this, it is too LOUD" on her AAC. Sara vocalized, which her aide interpreted as agreement. The aide then offered Sara the choice to STAY at the concert or GO to the library. The aide indicated both "STAY" and "GO" on Sara's AAC, then waited for Sara to respond. Sara smiled and got up to leave the concert. The aide modeled, "You have decided to GO" as they left for the library. The aide noticed a trend that Sara was becoming more expressive about how she feels in noisy locations.

Step 2: Prioritizing

Ranking preferences

It is crucial that we support the ability to rank preferences: expressing concepts such as MOST and LEAST, or FAVOURITE. Ranking activities allow people to compare one decision against another. It helps involve the person in choice-making and establish priorities.

Strategies that support ranking preferences include:

Model the person's AAC to reflect what they are expressing: "I see your smile and I hear your laugh. I think you LIKE this. I THINK you LIKE this a LOT!"

Introduce a ranking scale. Model the use of a ranking scale when talking about preferred and non preferred activities. Provide visuals to help the person indicate MOST and LEAST. A simple "thumbs up/thumbs down", or ranking 1, 2, or 3 stars, can help set priorities and clarify preferences.

Maximize opportunities to express preference and rank the options. The person with communication disabilities can be encouraged to regularly reflect on each part of their day. Ask them what they thought of different activities: if they LIKED it or NOT and what they liked MOST and LEAST.

Build the infrastructure that allows this person to understand, compare, and express choices. Create a framework, chart or other aid to support the decision-making and to document the choices.

Anna rank orders what is important to her
Anna was faced with the decision of where to live after her stroke. She had always assumed she would age in her own home. However, after her stroke, she could no longer drive. She was frustrated living far away from friends and the activities she most enjoyed. Anna's speech therapist helped Anna and her loved ones use a prioritizing procedure. The goal was to identify what is important to Anna, which is somewhat important, and what is not important.

Supporting comprehension
Anna was provided with line drawings that represented everything from eating and cooking to noise levels and personal care. She indicated which specific items were very important to her, or were somewhat important to her, or were not important to her at all. Anna found that the visuals helped her retain her focus on the idea and helped her rank items more easily.
This process helped Anna's family decide that Anna was likely looking for a quiet assisted living facility where paid staff could provide care and meals, and where Anna could join in a range of activities with other seniors.

Step 3: Taking action

Create a framework

The final essential step of supported decision-making is to turn preferences into actions. One tool is to document them in a decision-making agreement: this is simply a framework that explains how the person will be involved in decisions about their life. In Anna's case above, deciding where she would live was a shared decision. The decision-making agreement illustrated how Anna would participate and what support she needed. Below, the example of Samuel shows how he uses his decision-making agreement to develop his personal support plan. This plan will ensure that the staff person who supports Samuel in school will respect the decisions that Samuel will make for himself.

Samuel takes action
Samuel is preparing for life after school. Like many of his classmates, Samuel hopes to attend college. He is excited for a traditional student experience. He wants to live in a dorm and attend classes with friends. Samuel knows he will need support with daily living. He wants his college support person to be more like a peer or employee than the educational assistant who supported him in high school. It is important to Samuel that the future support person does not infringe on Samuel's right to experience daily college life. Together with his school transition team, Samuel prepares a daily support plan and decision-making agreement. His support person will help him get dressed and bathed each day, but Samuel will select his own clothes and the foods he will eat. His support person or a peer will accompany him to class and ensure his AAC is in reach, but Samuel will decide when, where, and how he communicates with it. He is very clear: he does not want to be prompted to use his device. That decision is now his alone. Samuel's transition team even goes so far as to write the job description and hiring announcement for Samuel's future support person. These documents make it clear: Samuel's staff must respect the boundaries between supporting Samuel and directing him.

Links and references:

Auckland Disability Law, Supported Decision-Making in Action (PDF), New Zealand

CALL Scotland. Create personal communication passports and Passports book. [Resources & templates]

Funk & Drew (2017). Realizing supported decision-making and advance planning: pilot training for people with disabilities, their supporters, and service providers. World Health Organization.

Helen Sanderson & Associates. Communication Charts. Includes a simple PDF template to make your own chart.

James & Watts, (2014). UNDERSTANDING THE LIVED EXPERIENCES OF SUPPORTED DECISION-MAKING IN CANADA: Legal Capacity, Decision-Making and Guardianship (PDF), Law Review of Canada.

Sinclair, Field, Williams, Blake, Bucks, Auret, Clayton, & Currie (2018) Supported Decision-Making for People with Dementia (PDF), a manual that is relevant to any disability group.

Zangari, C. (2018). On the Same Page: Helping Team Members Recognize and Respond to Unconventional Communication Signals. [Blog post that includes a template to create "How I Communicate" Books].

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3 strategies to support choice and control for AAC users - AssistiveWare

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All people who struggle with communication can be supported to make their own decisions. Discover tools and strategies that can help with this.

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quality indicators for assistive technology

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guiding the provision of quality at services

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assistive technology assessment process planner

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effectiveness of assistive technology use

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guiding document for including assistive technology in the iep

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delivery of assistive technology services

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delivery of quality assistive technology

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QIAT - Quality Indicators for Assistive Technology - Indicators

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Quality Indicators for Assistive Technology

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This website is no longer being updated! To visit this page on my current website, please use the following link:
http://thiswayoflife.org/talknotspeak.html
Please update any links you have to this site.

A lot of people are uneasy and unsure of the proper etiquette when talking to someone who doesn't use traditional real-time speech to communicate. Most non-traditional communicators go out of their way to overlook most transgressions of etiquette, but it can be a sign of tremendous respect to modify your own communication style to help both you and the non-traditional communicator better express your thoughts.

Below, a list of common tips is presented. However, all non-traditional communicators have their own preferences, some of which may differ from this list. For people you spend significant time with, it's always best to ask them personally what you could do to help the communication process. A simple, "Is there anything I could do differently while talking to you, to make it easier for both of us to communicate?" can go a long way! After all, more important then any of the suggestions below is your respect for the other person.

Tips for Better Communication

As with all people, assume they are intelligent until they prove otherwise!

Be patient - almost all non-traditional communication methods are extremely slow

Take turns speaking - say a short amount and then give the other person time to speak; Be careful about interrupting; Try not to talk about more than one idea at a time

Don't fill the "silence" while the other person is composing a thought with more of your own speech, allow both parties to say a reasonable amount

Don't ask them to "perform" for you by asking them to say certain words or asking questions just to watch them communicate - do not treat people like zoo exhibits

Speak normally (tone, volume, speed unless asked to do otherwise

Don't worry about saying they 'speak' or that you are 'talking' to them

Let the person know if you don't understand something

Offer to find someplace to sit or remain stationary if the person is trying to type or write

In group situations, give non-traditional communicators time and the opportunity to enter conversation - most have trouble 'timing' communication to occur during extremely short pauses

Don't 'take advantage' of the communication difference (for example, don't refuse to read a written message as a way of silencing disagreement)

If someone uses an interpreter or assistant, address communication to the communicator, not the assistant or interpreter

Don't touch people's communication devices

Extensive question and answer sessions about their communication methods can be annoying to many; ask if the person minds before engaging in extensive questioning

If you notice someone typing or writing or otherwise composing a thought, give them a chance to say something when you are done speaking

Ask before assuming the person would like you to finish her sentences

Don't pretend there is no communication difference!

The best communication is when both parties remain calm, relaxed, and interact mostly as they would if both parties spoke normally

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