Power through Partnership: Lessons Learned in AAC Team Leadership

Dana Nieder, MAT, MA, CF-SLP, AAC-mom

About Us

Partnership

Family

AAC user

SLP Teacher & staff

Everyone’s an Expert: SLP SLP • Typical language

acquisition & development

• Areas/scope of language • Communicative

Functions • Morphology • Syntax • Semantics

• Data collection & analysis

• Therapeutic activity planning & implementation

• Subconscious expertise • Techniques and

activities for eliciting language

Challenges: • Data-driven • Experience

Everyone’s an Expert: Teacher/Staff Teacher/Staff • Classroom routines and

activities (vocab, communicative opportunities)

• Academic knowledge: unit-specific vocabulary, etc.

• Classroom culture (pragmatics, vocab)

• Relationships

• Academic planning, scaffolding, and instruction

• Subconscious expertise: observations, relationships, etc.

Challenges: • Numerous responsibilities • Supporting many learners

simultaneously

source: NeONEBRAND on Unsplash

Everyone’s an Expert: Family Family Knowledge of their child: • Likes/Dislikes • Motivations

/Aversion • Nonverbal

communication • Life/environment

***Most meaningful generalization***

• Subconscious expertise • Sensory • Exposure to

concepts & vocabulary

• Access/positionin g

Challenges:

• The uninvolved/resistant family • The overinvolved/self-directed family

source: School Specialty store

Familial Resistance to AAC Previously

provided with misinformation

Negative impact on

speech

Pre-requisiteskills

AAC hierarchy

Lack of AAC knowledge

Lack of trust in professional

suggesting AAC

So many cooks in the

kitchen

Minimization of family input

Lack of meaningful

outreach/training

Advocacy demands

exceed capabilities

Past AAC attempts/failur

es

Medical management

School/”other” advocacy

Overestimation of their ability to

understand/predict

Natural phase of parenting

Can be seemingly supported by observations

Difficult to disprove (without access to

language)

Presence of “some speech”

Belief that their child is unable to use AAC

No previous recommendations

Lack of exposure to AAC users

Lack of exposure to similar AAC users

Other: family, culture, tech stigma, tech overwhelming, $

“Overinvolved” families

• Consider the source • Access • Disintermediation – Positive outcomes – Negative outcomes

• Role release

Parents Knowledge of their child: • Likes/Dislikes • Motivations

/Aversion • Nonverbal

communication • Life/environment

***Most meaningful generatlization***

• Subconscious expertise • Sensory • Exposure to

concepts & vocabulary

• Access/positioning

SLP • Typical language

acquisition & development

• Areas/scope of language • Communicative

Functions • Morphology • Syntax • Semantics

• Data collection & analysis

• Therapeutic activity planning & implementation

• Subconscious expertise • Techniques and

activities for eliciting language

Teacher/Staff • Classroom routines and

activities (vocab, communicative opportunities)

• Academic knowledge: unit-specific vocabulary, etc.

• Classroom culture (pragmatics, vocab)

• Relationships

• Academic planning, scaffolding, and instruction

Subconscious expertise: observations, relationships, etc.

Partnership: Building a Team

Everyone needs to feel: • Invested

– Perceive – Believe

• Empowered • Valued

– Heard (and responded to) – Recognized

• Supported

Supporting Team Members

source: Clarinta Subrata on Unsplash

Supporting Team Members

Beginners (dependence)

Intermediate (interdependence)

Advanced (independence)

Getting Started Expand/Diversify Build Leaders

Invest, Empower, Value, Support

Supporting Beginners (dependence)

Beginner

Invest

Perceive Necessity of AAC system

Believe Capability • user • family

*Leader

Empower

View successful AAC users & communication partners

Active coaching

Value

Listen to (and then address) hesitations and concerns.

Emphasize importance of their role

Support

Tailored vocabulary

Specific (simple!) activities & materials

Coaching

• Perceive the need for AAC – Mind readers

– Robust system: needed to disprove – Out of sight/Safety – Highlight something possible with AAC

that isn’t possible without it – Vocabulary shouldn’t be situation-specific

• Believe that AAC use is possible – Dispel false beliefs – Acknowledge the challenges

Special note for professional leaders: • Lead gently, but enthusiastically • Understand that families hear a lot of

recommendations • Plant seeds • Focus on the child, not the system

Special notes for parent leaders: • Perceive:

• developmental norms: vocabulary size, communicative functions

• Believe: • videos of home use (or photos or stories),

shared enthusiastically

*Hook one professional

• I see a bus! • I like that bus! • That bus is yellow! • That bus is big! • That looks like my school bus! • That is not my school bus! • I want to go on that bus! • I have a toy bus that looks just like that! • I want to play with my toy bus! • Look at the wheels on that bus! • That looks like the bus from (movie/book/show)! • I had fun riding the bus to school today! • Did you see that bus? • Is that my school bus? • Can I ride on that bus? • Is there a driver on that bus? • Can we sing the Wheels on the Bus? • Something happened to me on the bus.

Are you pointing to those leaves because of their colors? Or the way that they swirl when they fall, like water in a toilet bowl?

Or did you do an art project at school today with leaves, one that I won’t find out about until it comes home three weeks from now, faded and with holes from being stapled to a bulletin board . . . when I’m helpless to connect the two?

Or, wait, is it not the leaves at all . . . is it that car? Or the lady in the pink coat crossing the street?

Or maybe you’re pointing because we parked next to that tree the other day and I stepped in gum over there and you laughed and laughed?

I’m not your voice.

I clearly cannot be it.

-Dana Nieder, “I’ll be her microphone”, Facebook

Supporting Beginners (dependence)

Beginner

Invest

Perceive

Necessity of AAC system

Believe

Capability • user • family

Leader

Empower

View successful AAC users & communication partners

Active coaching

Value

Listen to (and then address) hesitations and concerns.

Emphasize importance of their role

Support

Tailored vocabulary

Specific (simple!) activities & materials

Coaching

• Empower: – Exposure to models of

success • AAC users • Modeling/Aided

Language Stimulation

– Coaching • Valued: Validated and address

doubts/fears/concerns – First, acknowledge. Than,

reframe. – troubleshooting

• Parent/Teacher/SLP

AAC Users: • Maya Finds Her Voice • Felix Finds A Voice • We Speak PODD YouTube

Channel (search YouTube!)

Modeling/Aided Language Input: • AAC: Video Examples of Implementation/Aided Language Input,

Pinterest board by Lauren Enders, MA CCC-SLP • Take-A-Look-Tuesday: Aided Language Input/Modeling

(Uncommon Sense) • And this video of modeling even when it’s mostly to yourself

(search YouTube!)

Supporting Beginners (dependence)

Beginner

Invest

Perceive

Necessity of AAC system

Believe

Capability • user • family

Leader

Empower

View successful AAC users & communication partners

Active coaching

Value

Listen to (and then address) hesitations and concerns.

Emphasize importance of their role

Support

Tailored vocabulary

Specific (simple!)activities & materials

Coaching

Concrete tools • Meaningful

vocabulary – (core & highly

motivating fringe) • Concrete activity

ideas • Sample Activities:

– Meal/snack time – Book reading – Cooking – Art – Any discrete activity:

map it out! • Coaching

Tailored Vocabulary: • Core Word Classroom by AssistiveWare • A Year of Core Words by PrAACtical AAC • AAC Implementation: Where Do I Start? by Heidi LoStracco, Speak for

Yourself blog *includes “Building Language: Where Do I Start” brainstorming chart

Professional Leaders & Parent Leaders: • Identify opportunities that already

exist. • Make it easy. • Make it errorless. • Check-in and celebrate!

Pool Noodle Robot & book

Supporting Beginners (dependence)

Beginner

Invest Perceive

Necessity of AAC system

Believe

Capability • user • family

Leader

Empower

View successful AAC users & communication partners

Active coaching

Value

Listen to (and then address) hesitations and concerns.

Emphasize importance of their role

Support

Tailored vocabulary

Specific (simple!) activities & materials

Coaching

• Technology and Language Center, Inc. (TALC) webinars: SMoRRES and Partner-Augmented Input; Communication Partner Instruction in AAC by Jill Senner, PhD, CCC-SLP and Matthew Baud, MS, CCC-SLP – training & poster available under “Links

and Downloads” section of website

source: Autumn Mott Rodeheaver on Unsplash)

• PRC’s Implementation Classes (live webinars-CEUs) • Angelman Syndrome Foundation’s Communication Training Series (on

demand webinars) • ReAACtion Therapy and Proof of Competence by Heidi LoStracco, MS

CCC-SLP

Prompt Hierarchy Rachael Langley, MA, CCC-SLP

source: online

Parent Leaders: • Keep it specific to your child • “An SLP recommended” . . . • Sponsoring training • Don’t dump, trickle • Check in (and give advanced warning)

Professionals: • “One thing that I’ve seen other

families do” • Connect families

Social M edia

Facebook Pages • PrAACtical AAC • USSAAC • CALL Scotland • Lauren Enders,MA, CCC-SLP • Rachael Langley, AAC

Specialist

• Hold My Words • We Speak PODD • Fine Motor Boot Camp • Uncommon Sense

Facebook Groups • User groups for each

app/company • AAC for the SLP • AAC (Alternative Awesome

Communicators) • AAC through Motivate,

Model, Move Out of the Way

• TalkingAAC Professional Learning Page

• Angelman, Literacy and Education (Including Alphabet Therapy)

Instagram • AACiswhereitsAT • PrAACticalAAC • TalkAACtome • FirstcoffeethenSLP • Lotsacomptons • WeSpeakPODD • AACchicks • AACtivists • UncommonSenseBlog

Other • AAC in the Cloud 2017 • Chapel Hill Snippets: activities, printables • POWER AAC Modules, developed by PaTTAN with Gail Van Tatenhove, CCC-SLP • USSAAC • CALL Scotland • CDAC (Canada) • Jane Farrall • Special Crafts for Special Kids

Supporting Intermediates (interdependence)

Intermediate

Invest

Perceive

Areas of potential growth

Believe

Growth/fl uency are attainable

Empower

Review and build upon past successes of AAC user/communication partner team

Value

Emphasize success

Listen for new challenges

Support

Share the long term plan!

Gently push (complacency)

Trackers/challenges

• Ongoing monitoring and assessment ofcommunicative needs across contexts

• Widening the focus:– Expanding language – Communicative functions– Communication breakdown & repair– Self-advocacy training

• As focus widens, acknowledge & celebrate your current location on the road

• New challenges: slow/inconsistent progress,plateaus, lack of urgency, overwhelmed by thebreadth of communication, (sometimes) speechdevelopment (augmentative/alternative). Seek to establish goals as a team.

Communicative Functions

Areas of Language

Supporting Intermediates (interdependence)

Intermediate

Invest

Perceive

Areas of potential growth

Believe

Growth/flu ency are attainable

Empower

Review and build upon past successes of AAC user/communication partner team

Value

Emphasize success

Listen for new challenges

Support

Share the long term plan!

Gently push (complacency)

Trackers/challenges

• Increasing goals/expectations: – Vocab/Syntax/Morphology

• Increasing sophistication of modeling

• Vocabulary challenges – Communicative functions

(previous slide) – Using additional features of the

system• Search function,

keyboarding, etc.

• Re-investing check-ins – Modeling challenges/trackers

• Progress Monitoring and nudges

• Introduction to programming (for the user)

• Exposure to higher level AAC users (for the user and the communication partners)

• Linguisystem’s Communication Milestones Guide

• Brown’s Stages of Syntactic and Morphological Development

• Handbook of Language and Literacy Development, Canadian Language & Literacy Research Network

• Communicative Competencies (Dr. Janice Light & Dr. David McNaughton) article • presentation (with strategies!): (last presentation linked

on Monday, 7/21/14)

SLP leaders: Share your goals (with an open mind)

Parent leaders: Ask, suggest, delegate.

Sample vocab/core word challenge

Source: Rachael Langley, MA, CCC-SLP via PrAACtical AAC

• Core Word Classroom: Planning for Core Words by AssistiveWare

• Learning to Speak AACtion Plan by Heidi LoStracco, MS, CCC-SLP of Speak for Yourself

• “Core Word of the Week” Words and Activities by Center for AAC and Autism

Monthly Modeling Tracker (source: Dana Nieder, Uncommon Sense)

21 Days of Modeling Challenge (source: Dana Nieder, Uncommon Sense)

Supporting Experts (fostering independence)

Expert

Invest

Perceive Self-assessment

Gaps in mastery/auto nomy

Believe Communication autonomy is obtainable

Empower

Pass the reins: programming, maintenance, social media, messaging, etc.

Value

The AAC user (with support, as needed) is now the team leader.

Support

Troubleshooting in community

Facilitate AAC community/leadership.

• Total communication in all contexts – Identify gaps – Check on communication partners – Communication modality self-selection

Supporting Experts (fostering independence) Invest

Perceive Believe

Empower Value Support

Self-assessment Communication Pass the reins: The AAC user Troubleshooting in Expert autonomy is programming, (with support, community

Gaps in obtainable maintenance, social as needed) mastery/autono media, messaging, is now the team Facilitate AAC my etc. leader. community/leadership.

• “What can I help with?” “What would you like me to focus on?”

• Pragmatics (across all contexts) • Programming & Use of additional features

– Text/email/social media

• Relationships with AAC mentors & community

• Opportunities to provide outreach and mentorship to less experienced users, professionals, and families

Invest Empower Value Support Perceive Believe

Beginner Necessity of AAC

system

User capability

View successful AAC users &

communication partners

Active coaching

Listen to (and then address)

hesitations and concerns.

Emphasize importance of

their role

Tailored vocabulary

Specific (simple!) activities &

materials

Coaching

Intermediate Areas of potential

growth

Growth/fl uency are

attainable

Review and build upon past

successes of AAC user/communicati

on partner team

Emphasize success

Listen for new challenges

Share the long term plan!

Gently push (complacency)

Trackers/challeng es

Expert Self-assessment

Gaps in mastery/au tonomy

Comm. autonomy

is obtainable

Pass the reins: programming,

maintenance, social media, messaging, etc.

The AAC user (with support)

is now the team leader.

Troubleshooting in community

Facilitate AAC community/leade rship.

When Things Break Down

• (Universal) Stressors/Fears/Frustrations: – Having

knowledge/experience/ opinions devalued, doubted, or discounted

– Not being (really) heard

– Being asked/required to do things that we don’t think we can do

– Families: Wasting time

ASHA’s Position Statement (2005): Roles and Responsibilities of SLPs With Respect to Augmentative and Alternative Communication: “Integrate perspectives, knowledge and skills of team members, especially those individuals who have AAC needs, their families, and significant others in developing functional and meaningful goals and objectives.”

• Presume sincere good intentions. Really. • Listen (without response). • Acknowledge. • Ask about what they need. • Speak about priorities in your domain. Ask

about their priorities. See if there are ways to work together.

Navigating roadblocks: – Give them an “out” – Create a “trial” – “We have nothing to lose” – Refocus on the AAC user – Gather evidence of success/ease of

implementation first – Families: speak specifically about your child – Which approach has the potential to cause

more damage, and which approach has the potential to yield more success?

Responding to a pro’s “no”s: Common Sense Approach

If you hear:

You can respond . . .

“too young”

We start speaking to babies at birth. He’s not too young to start having language modeled in an accessible way.

If we start “too late” we are losing communication learning time-if we start “too early” nothing is lost.

“too old” There’s not an age when people stop learning.

If we don’t try, we are denying her the fundamental human right to communicate.

“too behavioral”

If communication is not in place, the only way to communicate is through behavior. His “behaviors” are proof that he needs a better communication system, not a reason not to provide one.

With a communication system, his “behaviors” may decrease---without one, they almost certainly will not.

If you hear

You can respond . . .

“too cognitivelyimpaired”

Nonspeakers are notoriously underestimated during formal testing, even when tests are used that have been designed for nonspeakers. The only way to determine true cognitive level will be to provide a robust language system and listen to what he has to say.

How we will ever know if he’s “smart enough” to use big words if we never provide him with big words?

“too motorically impaired”

• For people with use of their hands, but trouble isolating a finger or pointing, there are keyguards, targeting squares, or even gloves.

• Many children see an increase in fine motor ability and hand control from using an app/device.

• For people without reliable hand use, there are switches that can be activated with other body parts, or systems that work with eye gaze.

Our inability to solve an access issue indicates that we need more help—not that this person isn’t a “candidate” for communication .

If you hear You can respond . . . “let’s start small and work our way up”

• He can’t learn to really use language without having access to real language.

• When we speak to infants and toddlers (who are learning typical speech) we use all of our words---not just 20 selected words.

• He has the right to learn a language system that will last---not to be re-taught every year.

• This approach will make him constantly prove that he is ready for the next step, a model of AAC implementation that was rejected 20 years ago. He shouldn’t have to earn words---he should be immersed in them.

Responding to a pro’s “no”s: Academic Approach

Per Communication Bill of Rights: “Each person has these fundamental

communication rights: • request desired objects, actions,

events and people • refuse undesired objects, actions,

or events • express personal preferences and

feelings • ask for and receive information

about changes in routine and environment”

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

• In addition to providing an alternate method of communication, AAC is a viable intervention approach that can stimulate the development of language skills and speech.

• Negatives behaviors decrease as functional communication increases

• AAC should be introduced before the child reaches frustration level.

• AAC Myths Revealed TobiiDynavox: series of handouts dispelling AAC myths, with examples and research citations. Some topics include: – Myth: AAC Will Keep Someone from Talking – Myth: Low Tech AAC is Necessary Before Providing a Speech

Generating Device – Myth: Some Speech Means AAC is Not Needed – Myth: AAC is the Responsibility of the SLP Alone – Myth: Too Cognitively Impaired to Benefit from AAC – (and more)

• AAC Modeling Intervention Research Review *research article* by Sennott, Light, & McNaughton (2016)

• Modeling, AAC Style by Dr. Carole Zangari (PrAACtical AAC) *links to 4 research articles

• Annotated Bibliography of Project Core; Center for Literacy and Disability Studies at UNC Chapel Hill

• Myth of Augmentative and Alternative Communication Pre-requisite Skills by Heidi LoStracco, MS, CCC-SLP, Speak for Yourself

Responding to a pro’s “no”s: Turn the Tables

• How do you think this system will allow for access to the functions of language beyond requesting? (commenting, arguing, joking, asking, etc)

• How will this system address morphology and syntax?

• How will this system grow? Will it require vocabulary reorganization as it grows? Will we need to switch systems when his vocabulary reaches a certain size?

• How will he be able to truly communicate without having access to all of the words, all of the time? (Ex. If he is eating lunch and wants to talk about the art project from this morning, how could he do that?)

When All Else Fails

artist: J. Howard Miller

• Ask what the next step will be if you reject their recommendation.

• Look into obtaining a private AAC/AT evaluation (local hospitals are a good starting point).

• Research your state’s AT/AAC Lending Library.

• Are there local (or not local) organizations that provide grants or devices?

• Can you do this on your own first, and then push it in to the school?

Uncommon Sense: niederfamily.blogspot.com

Facebook: “Uncommon Sense Blog”

Twitter: @UncommonBlogger

Instagram: @uncommonsenseblog

email: uncommonfeedback@gmail.com

Artist: Mohamed Ghonemi