A non-verbal boy with multiple disabilities communicated independently for the first time at age 16, using a Hummer, an external neckband device that translates humming sounds into language on a computer. For his first word, he chose the name of his educational assistant, the one who had been helping him for many years. When he realized it worked, he quickly typed his second word, “Doom 3”, the name of a computer game he wanted.
Another fellow with multiple disabilities communicated his first word at age 26. It’s hard to imagine what his life was like until then, or how his mother must have felt, unable to communicate with him for so many years. His first word was “MUTHER”, all the more astonishing because nobody knew until then that he had acquired any language skills.
These are a few of the many stories of disabled people who are now able to communicate, thanks to the breakthrough pediatric rehabilitation-engineering program led by Dr. Tom Chau. He is a biomedical engineer at the Bloorview Research Institute in Toronto and the Canada Research Chair in Paediatric Rehabilitation Engineering. Chau says, “pediatric rehabilitation engineering is so important, because it is a fundamental human right to be able to communicate and indicate personal preference.”
Nearly 50 million Americans have disabilities. Chau says, “Post-natal care has increased over time, so there are more and more children who have profound, multiple disabilities who 25 years ago would not have survived past the age of two, but are now able to live long and near-normal life spans.” Their needs are complex, so they need new technologies to help them engage with their world.
Chau and his team perform a detailed assessment to determine the labile channels for a child – the changes that occur when the child tries to communicate. He says, “We leave no stone unturned. Regardless of their inability to communicate through speech and gestures, we look to see if their body is communicative in some way.” The team then designs an external, non-invasive device that the child can activate, using either a mechanical or physiological switch. Devices can be engineered to read brain activity, spikes in skin electricity, residual motor activity, changes in heart rate, or fluctuations in breathing patterns.
Jacob, an eight-year old born with a rare neurological disorder, could only previously communicate yes or no by moving his head or opening his mouth. Now, he can scroll and select from a menu of phrases read to him at a low volume on an iPhone. When he finds the phrase he wants, he hits a switch with his cheek, and the iPhone reads his choice aloud at a volume his communication partner can hear. Now he can tell his mom, “I want a great big hug.”
Chau says there are about two-dozen children using the Hummer device right now. By vibrating their vocal folds, they produce periodic sound that is easy for the device to distinguish from other neck noises like coughing or swallowing. Children who use the Hummer can use it all day, unlike mechanical switches, which many find tiring by midday.
Recently, Chau’s team launched the Infinity Communication Access Lab at Sunny View Public School in partnership with the Toronto District School Board. A unique initiative, this embedded lab in a school setting allows the research, development and testing to be linked to school curriculum. Researchers will track a host of standardized measures to determine the impact these new technologies have on the children’s daily life, social life, self-esteem, and academic progress.
Chau says the future lies in the collaborative efforts of the bright minds who bring energy and passion to the field of pediatric rehabilitation engineering, from various industries like aerospace, kinesiology, physiology and automotive. His mission is to keep the research moving forward, to ensure that disabled children have the opportunity to develop to their maximum potential.
CONNECT THE DOTS
Watch this video to see how Jacob’s iPhone device works. Visit the Bloorview Research Institute at the Holland Bloorview Kids Rehabilitation Hospital, to learn more about devices that can give disabled kids a voice. Click here to learn about the first major book published on this subject, Pediatric Rehabilitation Engineering: From Disability to Possibility, evidence-based and clinically informed, co-edited by Dr. Tom Chau.
Originally published on GE Healthy Outlook, July 1, 2011. Copyright Jane Langille.