Empowering Communication: Starting the AAC Journey

Becca is at the beginning of her AAC journey, and we couldn't be more thrilled. I had been asking about the use of such a device since her days in Early Intervention, but she wasn't ready for a tablet at the time. Her speech therapist at the time started her with a very simple communication board, and while she was able to grasp the concept of using pictures to make requests, she had very little patience to actually use the communication board effectively.

Of course, at the time, Becca was barely three years old. Now, three years later, she has the ability (and a whole lot more patience) such that she is able to match pictures to their real-life counterparts. And it was precisely this combination of patience and ability that encouraged our current speech therapist to submit a request for a formal evaluation for Augmentative and Alternative Communication (AAC).

AAC means all of the ways that someone communicates besides talking. People of all ages can use AAC if they have trouble with speech or language skills. Augmentative means to add to someone’s speech. Alternative means to be used instead of speech. Some people use AAC throughout their life. Others may use AAC only for a short time, like when they have surgery and can’t talk.

There are a lot of different types of AAC. No-tech and low-tech options include things like

• gestures and facial expressions,

• writing,

• drawing,

• spelling words by pointing to letters, and

• pointing to photos, pictures, or written words.
  

High-tech options include things like

• using an app on an iPad or tablet to communicate and

• using a computer with a “voice," sometimes called a speech-generating device.
  

A person may use different types of AAC because there are many ways that we all communicate. An AAC system means all of the tools of this type that a person uses.

The Evaluation Process - Who is a Candidate for AAC?

A candidate for AAC is anyone whose communication needs are not met by natural speech, regardless of age or diagnosis, and who can benefit from using AAC to express themselves. 

Who can benefit from AAC? 

• Individuals with congenital or acquired disabilities that impact their ability to communicate. 

• People who have limited, unintelligible, or no speech. 

• Individuals with conditions like Autism, cerebral palsy, developmental apraxia of speech, developmental delays, genetic disorders, intellectual disability, aphasia, or traumatic brain injury, among others. 

• People who have difficulty expressing their needs, wants, ideas, thoughts, questions, fears, and pain. 

AAC is not just for non-verbal individuals: AAC can be used to supplement or replace speech, depending on the individual's needs. 

There are no prerequisites for AAC:  Anyone with communication difficulties can benefit from AAC, and there are no behavioral or cognitive skills that need to be demonstrated before AAC can be introduced. 

AAC can be temporary or permanent: AAC can be used as a temporary aid or a permanent addition to a person's communication. 

AAC can improve communication and participation: By using AAC, individuals can communicate more effectively, express their thoughts and emotions, and participate in everyday activities. 

AAC can be used across settings: The appropriate mode of communication depends on the needs of the individual and their communication partners. 

Once you have established that your loved one may be a candidate for assistive technology, the next step is to request an evaluation. The process for getting this done may be different depending on the age and circumstances of the individual who will be evaluated. In Becca's case, she has a speech therapist that she works with 5 days per week at school. This is the person who submitted the request on our behalf, and the evaluation was conducted by the NYC Department of Education. However, if you are looking to evaluate a child who is not yet of school age or an adult who is no longer in school, you will have to work directly with a speech therapist to request and conduct the evaluation.

The Evaluation

The actual evaluation is designed to gauge readiness for assistive technology. Some of the skills that the evaluator is looking for include:

1. Can the individual isolate his or her finger to independently point to or touch the tiles on the device?

2. Is the individual showing interest in the device?

3. Can the individual match the picture to its real-life counterpart?

4. Can the individual imitate an action after it has been demonstrated?

The evaluator will first conduct an intake assessment to learn as much as possible about the individual being evaluated. The evaluator will consult with the family, caretakers, and the therapists to get an understanding of how the individual currently communicates, and to get a sense of their overall functioning and whether they are a good candidate for assistive technology. When Becca had her intake appointment, we were asked about how she communicates her needs and her wants, how she communicates approval or disapproval, her attention span and ability to match and complete puzzles, how she interacts with her peers - all of these gave the evaluator a sense of her functioning so that they can begin to think through which device would work. For instance, people who have trouble moving their arms or fingers will have a different recommendation than someone who can easily touch or manipulate a screen. There are many ways to use an AAC system besides touching it. The speech therapist conducting the evaulation might work with occupational therapists (OTs) and physical therapists (PTs) to find the best way for each person to use their AAC system, once they have identified the best fit.

There are many different kinds of AAC - some requiring no technology at all, some that are static boards with actual tiles that are physically swapped out, some that are high-tech dynamic software-based solutions. And even within those high-tech solutions, there exist many different software solutions with varying degrees of complexity. Simpler solutions may offer very large tiles on one screen to enable the individual to more accurately identify the tile. However, these simpler solutions may limit an individual's vocabulary since there are fewer tiles to choose from. The most complex solutions, like Proloquo2Go have extensive options, but may require additional planning as the individual has to not only learn to navigate the various screens to find the words they want, but may need to press the tile more than once to get the device to speak on his or her behalf.

For Becca's evaluation, three "devices" were tested: a communication board with six icons or "fields", a plastic board with tiles that could be swapped out like puzzle pieces, and an iPad tablet. On the iPad, two softwares were attempted - one complex software that required a bit of motor planning, and a mid-level software solution that speaks on Becca's behalf once she presses the tile the first time. The evaluator came with preferred activites (all things Baby Shark!) and used them to prompt Becca to make requests: "more", "go", "now". We found that she did much better on the app where the device spoke on her behalf the first time she pressed the tile, and grew a little more impatient with the app that required her to press the tiles multiple times before it would speak. However, she showed great interest in the software and, more importantly, demonstrated that she understood the concept of using the tiles to communicate what she wanted.

After the evaluation was completed, the evaluator made a recommendation on a software solution that can be a good fit to start. She recommended TD Snap, a product by myTobiiDynavox. This software allows users to change the size of the tiles to include more or fewer icons on the page at once, icons are color-coded by category, there are customizable tiles that can be used to add additional words as needed, there are prebuilt phrases that can be used to communicate a variety of ideas, and the software evolves with the user. As Becca learns to read and write, she will be able to type any phrase into the software and the device will read it back.

The evaluator provided some tips for how to best implement the device. The goal is to use the device to enhance communication, but not to replace all communication with the device. Research shows that AAC can assist people with delayed verbal communication start to speak, and can help teach people how to read and write. As we communicate with Becca verbally, we also press key tiles so that she can make the connection of the verbal communication with its pictorial equivalent. Just this week, she was having a snack in the car and had been using the tablet to ask for more, but at one point she actually said the word "more" as she had been hearing it so frequently on her device. And as her understanding continues to improve and as she continues to grow in her language skills and her imitation skills, those connections may facilitate her own verbal communication moving forward.

The Importance of Advocacy

I have seen two heartbreaking stories in the news recently - both involved special needs children who were suing their education departments because they were graduating from high school without the ability to read or write. Their learning disabilities had gone completely unaddressed despite the fact that they had IEPs and had been entitled to services throughout their entire schooling.

For anyone who may be navigating these evaluations and requests for assistive technology or AAC devices through your education departments, if the evaluations are taking too long or the devices are not coming within the specified time frames, follow up. Speak to the school administration, and if the concerns remain unaddressed, escalate to the school district. The district wants to hear from parents and will do what they can to assist. You may have to do some digging to find the best person to whom to address your concerns, but it is worth the extra few minutes of your time.

And this doesn't go just for AAC devices - but for any service on your child's IEP. These services are mandated, and schools are required by the Individuals with Disabilities Education Act (IDEA) to provide a Free Appropriate Public Education (FAPE), which means that they MUST provide the services outlined in the IEP. There is no reason why we should see students graduating with disabilities that were never accommodated. This is where the advocacy from the parents, families, and caretakers comes in.

If your child would benefit from an AAC device, but you are unable to secure the evaulation from the school, escalate to the district to expedite. They will work with the school on your behalf to ensure that your child gets the services he or she needs.

For younger children or adults - advocate to your medical provider, to your speech therapist, to the insurance - do the research and see what is possible. Most insurance companies cover the costs associated with the AAC devices as these are a necessity - and a game changer - for many individuals who are nonverbal, minimally verbal, or otherwise have communication challenges.

We are still at the beginning of our AAC journey, but I have already seen the benefits. Becca is working on greetings and other social phrases, and has already kicked me out of her bedroom. And I was elated. The best is yet to come!