At Pennsylvania’s Initiative on Assistive Technology (PIAT), part of what we do is to assess the communication needs of individuals with significant disabilities. These individuals often live in the community and receive supports from teams of caregivers. Direct service providers work hard to maintain their health and provide access to activities outside the home. This allows people with disabilities to lead lives of greater freedom when compared to the once pervasive use of institutional settings, such as Pennhurst.
Too often, however, adults who are functionally nonverbal do not have a way to communicate. Individual communication is not perceived as a priority. We often hear, “I know exactly what he/she wants”. We also hear, “she/he throws tantrums, or engages in self injurious behaviors when frustrated.” These are two sides of the same coin. Behavior is communication. We must ask ourselves, when people lack access to effective communication, can they be said to be living self-directed lives?
One pervasive myth is that individuals who are nonverbal do not have anything to say. It is assumed that it is okay if only their immediate caregivers understand them. This should not be seen as acceptable.
What if that person doesn’t want to have a cheese sandwich for lunch for the 20th day in a row? What if their health status changes, and they are in pain? What if their caregiver becomes ill, or goes on maternity leave?
Let’s be clear: nonverbal adults do communicate. Everyone communicates, whether it be by gesture, sign, or facial expression. However, it is NOT sufficient if they can only be understood by a select few people. Or if their caregivers must infer communicative intent based on behaviors.
In the state of Pennsylvania, the statistics are grim. A vast 67% of those who do not communicate effectively by speech still DO NOT have a formal communication system in place. Even living out in the community, their human potential remains greatly restricted. They cannot order their own food at a restaurant, speak with their doctors, choose their work, or act as self-advocates. A link to the Everyday Lives document can be found here: http://www.dhs.pa.gov/cs/groups/webcontent/documents/document/c_241391.pdf
Another dangerous assumption is that someone with complex communication needs does not need, or cannot learn, a robust communication system. When we only provide access to a few words, we deny access to language. This is especially true when we restrict a communication system to mainly nouns. If all we can do is request, we’ve lost the ability to reject, comment, ask, greet, and describe.
Take a moment to watch this video by Chris Klein. As an adult with cerebral palsy, he lives by himself. His means of communication? An AAC device that he accesses with his big toe.
Another example of an individual with CP leading an everyday life is Sara Pyszka. She was one of the empowerment speakers at Temple’s summer AAC institute, ACES, in 2016. This video is from college. She has now written a book, “Dancing Daisies”, and has also authored a musical. She uses her communication device to direct her own care.
These videos are not meant to “inspire”, but rather to show that people with complex needs can lead fulfilling lives when they have the means to communicate.
Imagine the following scenario. What if you see someone in a wheelchair, out in the community, without a communication device? What would you assume about their abilities? Would you presume competence?
The assumption of inability is a dangerous one. It places limits on our interactions with people with disabilities. A much safer assumption is to presume that all can learn, and all can communicate, given the appropriate tools.
This assumption of inability becomes intertwined with another AAC myth; that our novice AAC user should be able to learn use their device without training or support. “I just hand my consumer a device, and they will know what to do.” This is quite the oxymoron.
Yes, people can handle a robust system and yes, they will need support in order to gain skills. We cannot expect someone to become an effective communicator without effective communication partners! They are learning a new language.
There are three broad stages to selection and implementation of any new communication system:
- We match the needs of the individual with the features of a speech generating device (assessment)
- The individual needs time to try out that system to see if it truly matches their needs (to try before you buy, check out http://disabilities.temple.edu/programs/assistive/atlend/ )
- The device is acquired and customized to best meet that person’s communication needs (acquisition)
How communication partners approach their role during all of the above stages, plays a vital part in how quickly skills are acquired, (or how quickly the device is “abandoned”).
It is not our job to make someone use their SGD. If we approach communication as a demand, we are likely to be met with resistance. And anxiety may become associated with the task.
So, how do we support skills acquisition with a new system? How do we support learning any new language? We model communication, and treat it as an opportunity for social engagement. Communication is all about building relationships.
Many adults with intellectual disabilities now live in the community. They may reside in small group homes, or CLAs (Community Living Arrangements). Life in a CLA is often highly scheduled, or routinized. This is understandable. People without communication may suffer from anxiety if their daily routines are not predictable. Anxiety may lead to what are seen as “negative behaviors” (think: behavior = communication).
Routines are valuable, but the danger therein lies in the lack of opportunities to make choices in the context of these routines. The ability to choose a food, a companion, or an activity, lies at the heart of living an everyday life.
Modeling communication on a speech generating device is an excellent way to offer choices. “Let’s see, do you want to go to the mall, or go to the gym today?” “Should we cook chicken, or burgers for dinner?” By modeling, not only are we offering people control over their everyday life, we are also showing them how to navigate their device, to find their vocabulary and learn how it works.
By modeling phrases and sentences, we are showing them how language grows. To do this, we need a robust communication system that contains high frequency, everyday words. These are words, such as make, do, eat, up, down, more, yes, and no. These words are often called Core Vocabulary. The following video illustrates the importance of these core words.
By providing access to language, we are opening the door to leading an everyday life. Even mundane decisions, such as whether to wear the blue socks, or the purple, form an important part of this.
In 2014, Pennsylvania’s Office of Developmental Programs formed the Information Sharing and Advisory Committee (ISAC), to discuss policies and practices to support people with disabilities. In their 2016 edition of Everyday Lives, the number one recommendation in the Values In Action document is to Assure Effective Communication. Recommendation number two is to Promote Self-Direction, Choice, and Control. These two recommendations go hand in hand.
The importance of effective communication cannot be underestimated. People with complex communication needs are far more likely to experience abuse and violence over a lifetime. “Placement of people with disabilities in institutions also increases their vulnerability to violence. In these settings and elsewhere, people with communication impairments are hampered in their ability to disclose abusive experiences” (WHO, 2017)
The following video, recorded by Gail Van Tatenhove, illustrates the need for adults with CCN to have the means, and the words, to report abuse and neglect.
We have come a long ways since the days of mass institutionalization. The road ahead needs to be paved with access to communication. All deserve the right to communicate to the best of their individual potential. Everyone should have the right to a self-directed, everyday life.
Violence against adults and children with disabilities. (n.d.). Retrieved November 27, 2017, from http://www.who.int/disabilities/violence/en/