Too much difficulty

The difficulty may be too great for the person to benefit from assisted communication.

You must have heard one of these comments:

- "It looks like she doesn't want to communicate ."
- "It looks like she doesn't want to communicate ."
- "He can barely move, so how can he use assisted communication?"
- "Tests show very poor cognitive skills ."
- "His disease is progressive. When he needs assisted communication, he will no longer be able to use it. Why even bother with that?"

From these comments, we can read the attitude that a person's difficulty may be "too great" to be able to use assisted communication at all - or at least to be used with something more advanced than very simple forms of assisted communication.

Because of such statements or assumptions, assisted communication often remains unavailable, its application is delayed or its use is limited. What happens when a person has limited or no access to functional communication for a certain period of time? In that case, we will notice:

Why would anyone restrict access to assistive communication devices or software to people with communication disabilities?

There are three possible reasons:

Skills needed to use assisted communication

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It is assumed that there are several predispositions, i.e. necessary skills. First, we will look at cognitive predispositions .

The belief that individuals must have certain cognitive skills to be able to use assisted communication probably originates from research into how children acquire language, that is, speech. For example, children usually demonstrate some of these cognitive skills in the period of acquiring language and speech:

- understanding cause-effect relationships, - understanding the concept of a means that will lead to a certain goal, - awareness of object permanence (objects exist even when we cannot see them , hear or touch), - and others. Many extend this relationship to other fields as well and claim that children, and even adults, cannot use assisted communication for speech if they do not have the above cognitive skills developed.

Kangas and Lloyd (1988) analyzed various studies on early language development and concluded:

- Cognitive development and the emergence of language and speech are interconnected, but not causally .

- Sometimes language skills appear before the expected cognitive skills have been developed .

These statements justifiably call into question our choice to withhold or delay the introduction of assisted communication by conditioning it on the development of cognitive skills. Kangas and Lloyd (1988) claim that "communication experience can also be a means of expanding cognitive skills" .

Is it considered that adults also have to meet certain prerequisites?

Not all assumed prerequisites are based on the stages of children's speech and language development. Those who hold that these prerequisites must exist may not necessarily state so, but the end result is denial, delay, or limited access to assisted communication.

For example, some therapists will not start assisted communication unless they have exhausted all other options first. This stems from the desire to recover as much natural speech and language as possible. However, in reality, "assisted communication can be an important tool for therapy, but also an auxiliary mechanism by which an individual will reach functional communication. It is important to consider assisted communication as a part of therapy, and not as an alternative or last choice" (Fager et al., 2007).

Another prerequisite that some advocate is that there must be an absence of natural speech before the introduction of assisted communication. All too often, people with amyotrophic lateral sclerosis (ALS) are not assessed for the possibility of using assisted communication until their speech becomes completely dysfunctional. This means that these people will not have a functional way of communication for a certain period of time. To prevent this, it is recommended (Ball et al., 2002) that an assessment for assisted communication be made when the speaking ability of a person with ALS falls to 60% of typical (190 – 200 words per minute).

People who have some speech preservation may not be considered candidates for assisted communication simply because they still have some speech preservation. However, often the meager vocabulary of people with apraxia of speech is too limited to meet their needs. The same is true for people with Parkinson's who may understand one or two known communication partners – and often only sometimes. Due to the last remnants of functional speech, they are denied the help of assisted communication.

Expectations

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Access to assisted communication is sometimes limited, delayed or unavailable due to certain expectations .

What are the expectations?

Recovery after a stroke or brain injury usually takes place in a very short period of time. Therefore, it may happen that the introduction of assisted communication waits until the end of this period instead of using it as part of the therapy from the very beginning. It may also happen that the question arises whether it makes sense to introduce assisted communication at all after a long period has passed since a stroke or brain injury.
In order to recommend assisted communication to someone, the person must be able to use it independently. This attitude ignores the fact that none of us communicate independently. Communication does not happen in a vacuum. Even the most skilled speaker sometimes needs a little help to remember a word, being asked questions to clarify what he said or using reminders to remember some details. We count on the people we communicate with to interact with us to establish meaning (co-construction) and to provide help/support when needed. This also applies to people with cognitive and language disabilities. Moreover, research confirms co-construction in people with aphasia. "One of the strategies to reduce the frequency of interruptions in communication between persons with aphasia and their communication partners is to establish common spaces of communication for the construction of messages...It is crucial that those who interact assume joint responsibility for formulating, expressing and confirming communicative intentions " (Hux et al., 2010). Kagan's (1998) protocol for assisted communication for people with aphasia follows the principles of message construction.
Individuals should have consistent access to a communication device (eg, a finger tap to have the device speak a message) before the device is fully deployed. Just as it is thought that "communication experience can help in the development of cognitive skills" (Kangas and Lloyd, 1988), which we have already analyzed, communication experience can help in the development of motor skills or control. Some people need more time to understand and/or learn the motor patterns needed to operate a communication device, either by looking, pointing, or scanning. Others are constantly improving their motor skills. Although we want to know if consistent access to the device is possible, it does not need to be perfected before introducing the communication device.
It takes a long time for users to get used to communication devices. This expectation particularly affects people with ALS because time is extremely important to them. Medical staff or doctors may decide that there is no reason to consider a communication device that requires waiting months. In the US, the process of obtaining funding does not take as long as one might expect, especially for the most common sources of funding for people with ALS – in the US, it is Medicare or private insurance.

How to overcome different expectations that affect access to assisted communication?

The Life Participation Approach to Aphasia (LPAA; Chapey et al., 2000) provides a general model that emphasizes the re-engagement of individuals in life. Using this approach, people with aphasia and their family members identify important life goals. For example, a life goal just after a stroke might be to communicate effectively with medical staff. A life goal for the same individual later in the recovery process might be to return to volunteering. During therapy, all participants will work on everything necessary to achieve this goal. This could include scripts for interacting with medical staff, improving reading skills to find names on staff lists, and using a communication device to communicate daily needs/topics with caregivers and medical technicians.

In short, LPAA recognizes that people with aphasia want to re-engage in life in a very specific and unique way . Therapy focuses on the skills and tools needed for this. Expectations such as those mentioned above must remain in the background in order to work on life goals and re-engage individuals in important activities.

Although LPAA is specifically designed for people with aphasia, it can certainly be applied to people with different diagnoses. Ultimately, assisted communication enables individuals to “participate in life situations and connect with the world around them” (Beukleman, Garrett, & Yorkston, 2007).

Skills needed to work with communication devices

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Some argue that high-tech communication devices are unsuitable for people who do not demonstrate the general prerequisites for using assisted communication that we have already discussed, as well as skills such as knowledge of symbols, categorization, the ability to navigate from one page to another, adequate memory, etc.

The belief that such capabilities are necessary, especially for high-tech devices, could be based on two things stated by Romski and Sevcik (2005):

High-tech communication devices are by their very definition complex. They have the ability to store thousands of messages, symbols and photos that can be used in many different ways, the ability to access the Internet or communicate by e-mail. Fortunately, people with complex communication needs do not need to experience this complexity. These devices can be personalized in such a way that their interface (i.e. screen layout, organization of symbols) is intuitive and easy to master. As a consequence, today's communication devices do not require a “sophisticated set of cognitive skills” (Romsky and Sevcik, 2005).

Concerns about the complexity of the device also affect therapists and family members. When they have the proper tools to learn about a communication device and how to teach someone how to use a new device, anxiety and frustration can be reduced, or even eliminated.

High-tech communication devices are expensive. To avoid expensive referrals, some healthcare professionals will first choose a low-tech aided communication device until the individual demonstrates the required skills. However, in the US, a family rarely pays for a high-tech communication device themselves. Most of the cost of communication devices (when recommended) in the US is covered by Medicare, Medicaid or private insurance companies.

The third problem concerns independence.

High-tech communication devices should not be recommended for people who need help navigating the device, understanding all the symbols, or putting together sentences. However, as we concluded earlier, we all rely on others to cooperate with us in order to establish meaning (co-construction) and to provide us with help/support when needed . If this is true for verbal people, why would we ask people with complex communication needs to communicate independently?

Furthermore, some researchers and health professionals have concluded that the specific characteristics of communication devices such as speech output to gain attention or as a speech model, display and organization of vocabulary, the ability to easily add new words, compose and store messages in advance, similarities to electronic media with a screen (e.g. . television, game consoles), the ability to add images and sound, and different selection methods** and opportunities for feedback (e.g. audio and visual) may be more suited to the abilities and needs of individuals, of varying degrees of ability and difficulty, than low-tech means such as communication boards and a book.

Assisted communication for everyone who needs it

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In this text, we explored the consequences of the claim that the difficulty may be too great for a person to use assisted communication. Such assumptions limit, delay or deny access to assisted communication. On the contrary, the consideration of assisted communication should be based on the strengths and needs of individuals and the characteristics of the assisted communication tools that complement them . Now let's continue our search for facts about cognitive abilities and assisted communication as nicely stated by Mirenda (1993):

"...breathing is the only relevant prerequisite for communication. Breathing means life, and life means communication. Very simple."

"...we understand that everyone can communicate and, in fact, everyone communicates in some way, if they have something important to say. In other words, communication is neither a right nor something to be learned - it is inevitable: people cannot help communicating."

We must work to ensure that everyone who could benefit from it has access to assisted communication, regardless of diagnosis or level of difficulty.

*Definition: Assisted communication includes communication tools and techniques that are used independently or in combination, to replace communication for people who have difficulties in verbal or written communication. Assisted communication includes non-aided techniques (eg pointing, gestures), low-tech aids (eg communication books and boards) and high-tech communication devices (eg devices and computers with speech output).

**Definition: Selection method - a method of physically accessing keys, buttons, fields, or areas. Selection is most often done with fingers, but it can also be done using different parts of the body or equipment (eg pointer, mouse, joystick, switch).

Multimodal communication system – use of different modes for independent and mutual communication including speech, vocalization, facial expressions, body language, gesticulation, signs, pointing, low-tech assisted communication and high-tech assisted communication. All of us who can speak use a multimodal communication system in our interactions.

LITERATURE:

Ball, L., Beukelman, D. and Pattee, G. (2002). Augmentative and alternative communication clinical decision making for persons with ALS. Perspectives on Augmentative and Alternative Communication , 11(1), 7-12.

Beukelman, D. and Mirenda, P., (2005). Augmentative & alternative communication: supporting children & adults with complex communication needs, 3rd ed. Baltimore: Paul H. Brookes Publishing. 111-131.

Beukelman, D., Garrett, K. and Yorkston, K., (2007). Augmentative communication strategies for adults with acute or chronic medical conditions. Baltimore: Paul H. Brookes Publishing. 12.

Chapey, R., Duchan, J., Elman, RJ, Garcia, LJ, Kagan, A., Lyon, JG, and Simmons Mackie, N. (2000, February 15). Life Participation Approach to Aphasia: A Statement of Values for the Future. The ASHA Leader.

Fager, S., Doyle, M. and Karantounis, R. (2007). Traumatic brain injury. In D. Beukelman, K. Garrett, and K. Yorkston (Eds.), Augmentative Communication Strategies for adults with acute or chronic medical conditions (pp. 131-162). Baltimore, MD: Paul H. Brookes.

Hux, K., Buechter, M., Wallace, S. and Weissling, K. (2010). Using visual scene displays to create a shared communication space for a person with aphasia. Aphasiology , 24(5), 643–660.

Kagan, A. (1998). Supported conversation for adults with aphasia: methods and resources for training conversation partners. Aphasiology, 12, 816–830.

Kangas, K., and Lloyd, L. (1988). Early cognitive skills as prerequisites to augmentative and alternative communication use: What are we waiting for? Augmentative and Alternative Communication , 4 (4), 211-221.

Mirenda, P. (1993). Bonding the uncertain mosaic. Augmentative and Alternative Communication , 9 (1), 3-9.

Romski, M. and Sevcik, R. (2005) Augmentative communication and early intervention: Myths and realities. Infants and Young Children , 18(3), 174-185.

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