Presentation Proposal Accepted
Siobhan and the Wizard of Ounces
Siobhan’s speech generating device is worn out and malfunctioning. The race is on to find a replacement, but nothing available suits her needs.
Communications Support Vital
Joseph Karr O’Connor, Linda Karr O’Connor, and Siobhan live in Santa Monica, California. Linda and Joseph help support Siobhan’s use of the Picture Exchange Communication System (PECS) protocols and Augmentative and Alternative Communication (AAC) systems.
We share from a parents’ perspective the struggle to ensure that Siobhan, now 26, keeps communicating.
Virtually every non-vocal person with developmental disabilities can acquire functional communication during 22 years of education. If every student left school with functional communication skills, the adult services world would become one where functional communication is supported and expected. Instead it is not and it is up to the family to provide support.
Despite the availability of low-cost, research-based communication methodologies which are successful if properly implemented, adults with cognitive disabilities who are non-vocal are often left with nothing but grunts and gestures to express their wants and needs. This is a deprivation of human as well as educational rights, and places them in potential danger as they resort to unwanted behavior to attempt to communicate. Siobhan is one of the few educated in functional communication. For her own well being, safety, and greater enjoyment of life, support of her communications systems are vital.
Acquiring A New System
Siobhan’s communication depends on implementing PECS protocols through the use of speech generating devices (SGDs). She is using a Tobii Dynavox Xpress, a model that is sadly discontinued. The Xpress is malfunctioning and held together with tape. The race is on to get an evaluation to prove to insurance that she still needs an SGD, evaluate systems, do trials, choose a system, submit the funding request to insurance, purchase the system, have it delivered, and do the configuration.
From experience we can say that the device should be small and light enough for Siobhan to hold with one hand and talk with the other. Form factor is an aspect of hardware design which defines and prescribes the size, shape, and other physical specifications of components. A small form factor is critical for Siobhan. It is most unfortunate that SGD form factor design has been engulfed by the design characteristics of the Apple iPad. “Just like an iPad!” chant the sales team. That is not the form factor Siobhan is looking for. A new device should be light and portable.
Linda and Joseph attended PECS training presented by Lori Frost and Andy Bondy in 1997. Siobhan started using her first SGD, a DynaVox DynaMyte 3100, in 2003. From the experience gained through years of experimenting with symbol libraries it is essential that a new device must have a license to use Picture Communication Symbols (PCS).
A person’s voice is unique and distinct. As Siobhan grew we changed the voice to best represent her age. A few years ago after some experimentation we settled on an adult voice that actually has an attitude, Susan by Loquendo. This voice or an approximation of it is essential to the way we percieve Siobhan to be. A new device should have a license to the Loquendo voice pack with the Susan voice.
If you are vocal, how many hours a day do you use your voice? The Xpress has interchangeable batteries so when power is low another one can be swapped in. This provides extended use. Unfortunately new systems have built-in batteries that only last a portion of Siobhan’s talking day. A new SGD should have interchangeable batteries.
An essential component of a new system is software. The software that runs on the device should be easily and quickly configuable. We often have to update photos of new people in Siobhan’s life, add a word, and change the function or location of a button. One essential feature is the ability to do a word count so we can determine if usage is up or down. If communication is up we know that our methodologies are working, if down we need to pinpoint the cause and devise and implement a strategy to encourage communication. A new device should have word count as a software feature.
In addition to the software that runs on the device, there is also companion computer software. This can provide a way of downloading the device database, editing the screens, and uploading the new version to the device. Bonus points if it is platform agnostic. Special mention if it includes backing up to a remote server. A new device should have flexible and powerful computer software.
We are very fortunate to live within driving distance of the Center for Applied Rehabilitation Technology (CART) at the Rancho Los Amigos National Rehabiilitation Center in Downey, California. CART provides a number of services and one of them is evaluations for AAC systems. Carlene Yonemori and team members did a speech evaluation of Siobhan and recommended that she continue use of AAC systems. They then made some suggestions about new systems and with our input selected potential systems. They arranged for trials of the systems. Then Siobhan met the Wizard of Ounces and the magic happened. But you’ll have to come to our presentation to hear all about it. See you there!