BUENOS AIRES — Sheila Levi and her son, Ian are chatting through Tobii.
The 7 year-old suffers from chronic encephalitis, which affects his language and motor skills, making him unable to communicate through language.
But this new Swedish eye-tracking computer, simply known as Tobii, is giving Ian a voice by allowing him to communicate with the world by selecting sentences and objects on a screen through his eye movements.
A wink is enough for Ian to chat with his mother, write a sentence or play a game.
Levi says Ian’s confidence and independence have changed radically thanks to Tobii.
“The peace of mind I get as a mother is very important. Right now, what has changed with Ian is that he can play on his own, turn the television on, share a moment with his brothers, play music to them or tell what he did. He can take the device to school, raise his hand and speak with the device. Ian’s classmates say that he can speak. Ian speaks with the Tobii (device) and with his eyes. This has changed Ian’s self-confidence, it was strengthened.”
According to Levi, who is also the president of the Gecenym (Spanish acronym for Knowledge and Management of Neurological and Mobility Illnesses) Foundation, an independent institution that provides assistance to persons with neurological diseases, one out of 300 newborns in the world suffer from chronic encephalitis.
Ian is one of the lucky few who benefits from this revolutionary tool since he was 4 years-old. But Tobii’s use is so far very limited. It’s still relatively unknown and virtually unaffordable to many.
“The main barrier is that therapists and families do not know that this is a real possibility in our country (referring to Tobii device). The second obstacle we overcame is the cost issue. Initially, the Tobii cost 30,000 euros ($32,730). Today, it costs 13,000 euros ($14,183). The cost dropped almost one third. Families buy it directly in its country of origin and the foundation helps them to import it. But not all the families can afford it so social insurances and the state need to support them because this changes radically the life of a person, a family and society as a whole,” Levi says.
Ian’s family had to join forces to collect the 30,000 euros, which felt like buying a car, Levi recalls.
Now, her foundation is teaching professionals across the country how to use the technology, like the therapists of the Centre of Integral Rehabilitation and Neurological Education in Buenos Aires.
This private institution has just one Tobii device for the 31 children it cares for, due to the high cost of the equipment.
Four-year old Eluney Rodino is one of the children stimulated by Tobbi and the therapists agree that the children’s improvement is noticeable.
“It was a very important change for us. One very important thing is the smile on childrens’ faces when they manage to use the device and the independence that it gives them, because usually when they have to make a signal or hit a switch, they often need the assistance of an adult to help them adjust their motor skills. With this device (referring to Tobii), no one needs to help them. This gives them a degree of independence that I believe makes them very happy. And the waste of energy and their tiredness is smaller,” says Natalia Ibarra, phono-audiologist at the centre.
The foundation also helps families with a certificate of disability to import the Tobii device from Sweden without paying Argentina‘s prohibitive customs’ fees.
This eye-tracking technology also allows disabled children to be integrated in standard school classes.
Ian attends a community school every morning, helped by his teacher who sits next to him in the classroom with the Tobii device, allowing him to learn the days of the week, like any other child in the classroom.
Dr Claudio Waisburg, a child neurologist at the Institute of Cognitive Neurology in Buenos Aires, says that these new technologies bring a brand new understanding of how the human brain works.
“With the improving knowledge of the brain, with the advance of neuroscience, with the changes of the techniques to better understand how the brain works, how it communicates, how neurons relate to one another, one can better understand how interventions cause changes in our brain structure. This does not mean that our brain used to evolve differently but today we understand better how it changes thanks to specific interventions that are geared towards stimulation,” he explains.
Levi and her Gecenym Foundation presented a draft resolution to the Parliament in October 2015 to ensure that every child, regardless the level of disability, could play with classmates in Argentina, using technological tools like Tobii. But its high cost requires health insurances, which need to be approved in the parliament by no less than three commissions – disability, health and budget – before being voted.
This video was produced exclusively for The Associated Press on January 20, 2016. Click here to watch it.
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