In a recent New York Times article by Ashlee Vance describing the challenges faced by individuals with communication disorders who struggle with insurance companies and their funding of Augmentative Communication, we find a common mission.
The following is our story, but in reality, it is the story of countless families who face unnecessary obstacles in their efforts to provide a higher quality of life for their loved ones.
Alex was two years old when he started losing his language skills as well as other developmental milestones. Months later he was diagnosed with Autism. After eighteen months of intense effort at teaching him sign language, with minimal progress, we turned to PECS (Picture Exchange Communication System) which dramatically improved his ability to communicate his wants and needs. At age five, Alex was still nonverbal and we decided to try an Augmentative Communication Device (AAC). After a lengthy wait period, Alex was evaluated and a device recommended based on his needs and abilities. Then began the lengthy process of determining who would pay the nearly $10,000 price tag. Should it be the family, private insurance, the public schools, or the Department of Developmental Disabilities? Eventually we received our device, and after the initial excitement, the limitations of the system became evident. It was cumbersome, heavy, and fragile. The pictures were not easily identifiable for Alex, as he had significant visual processing problems. While it provided another avenue of communication, it fell far short of our expectations. Talking with other parents who were using similar devices with their children, we realized that we were not alone in our frustration.
My husband Fredi and I began to imagine what an ideal system would look like. The ideal system would be more versatile so that pictures could be customized. If desired, photographs of specific items rather than generic figures could be uploaded. The format of the pages could be altered as needed. The AAC would not be device dependent, but, instead, would be a system that could be accessed on a variety of computer operating systems. Finally, the cost would not be so prohibitive that it discourages families from trying an AAC system, and insurance companies and schools would be more willing to fund it.
While Alex was the inspiration, my husband Fredi was the ignition for the process that developed into Alexicom Tech. After exploring the technical possibilities and becoming convinced that there was no reason why a more effective system could not be developed, he brought this idea to his friend and work associate Karen Suhm. With a Ph.D. in Physics and a background in Engineering, Karen had the skills, persistence, and ingenuity to bring the idea to its full capacity. Along with the expertise of two speech pathologists, Staci Neustadt and Marti Baio, Karen made the system user friendly and versatile. This talented group of people turned the idea of a more effective, more accessible AAC into a reality that will benefit individuals, families, schools, medical facilities, group homes and nursing homes.
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We recently beat out DynaVox, the leader in AAC devices, to provide services to the Phoenix Union High School District Special Needs Department. A major advantage that helped win the contract is that with Alexicom Tech, there is no need to purchase additional computers. Our service is not device-based; it is internet-based but not internet dependent due to its off-line publishing capacity.
With Alexicom we are able to use pictures that we know Alex can identify and comprehend. Many autistic children have great difficulty generalizing from the specific item that they interact with in their lives to a general picture or symbol. We can use a photograph of his dog, Kiko, or find a near exact photo of his red ball on the internet to use in his pages, rather than the generic pictures that are typically used in communication boards.
With Alexicom we can use a more portable computer at home and in the community. At school, his communication boards are projected onto the Smartboard which empowers him to communicate more during circle time, etc.
Alexicom Tech will continue to evolve to meet the needs of a diverse population of children and adults with communication disorders.