Marquette Senior High School student Daren Hillier has always had a lot to say, and thanks to assistive technology, now he can.
Daren, 17, was diagnosed with severe spastic quadriplegia, a form of cerebral palsy, when he was 8 months old. Despite being non-verbal, he found ways to communicate.
"Daren has used his eyes to communicate from a very young age," explained Shelby Hillier, Daren's mother. "He will look up for 'yes' and look down for 'no'. He also is very visually aware of his surroundings and will use his eyes to let you know what he wants or needs."
Although he had a limited way to communicate, Daren and his parents, Shelby and Kurt, wanted more. "We always said it was like Daren was trapped in a body that didn't work," said Shelby. "You could always tell he wanted so much to tell you what he was thinking. He is a very smart young man."
Daren, now in the 11th grade, has been mainstreamed in regular education classes since kindergarten, with a full-time aide to assist him. When Daren was in elementary school his speech therapist recommended a device called a DynaVox, a speech-generating device that Daren could use with a switch to select things he wanted to say and do.
In conjunction with the speech therapist, the Hilliers worked through Marquette Alger Regional Service Agency (MARESA) and UCP Michigan's Upper Peninsula Assistive Technology Center to acquire a variety of switches and educational software that Daren uses in school. The AT Center is funded by MARESA and the Michigan Department of Education, and works with students, among others, to provide AT assessments, equipment, and training.
Shelby credits the AT Center Manager, Sara Menzel, with helping them through the process of equipping Daren with ways to use the device at school. "She was very helpful in getting this done," Shelby said. "It worked out very well for Daren, and he was able to take tests, talk to his friends and even give his book reports and speeches in front of the class with his DynaVox."
Over the years, however, Shelby said the DynaVox became more difficult for Daren to use as he got into middle & high school and his spasticity grew worse. There were also many significant improvements in available technology during that time.
In September of 2009, Daren went back to see Menzel, who set up an evaluation for Daren to try out the Tobii P10, a multi-function, eye-controlled communication device. Daren met with Jared Koski, a speech therapist working with Marquette Alger RESA and the AT Center.
Shelby was extremely happy with the results.
"Let me just say, he did amazing!" she exclaimed. "He was flying through the evaluation and loving how easy it was for him to use this device to talk. We knew we had to get one of these for him to be more independent."
The family once again started the long process to try to acquire the Tobii P10 for Daren. Medicaid denied the request almost immediately, but Menzel advised the family to appeal the denial and ask for a review, which they received that June 2010.
"We pleaded our case about how much this device was needed for Daren to become more independent and do better in school by being able to communicate with his peers & teachers," Shelby explained.
The denial was reversed, and shortly after, Daren received his Tobii P10. "If I could give anyone advice who needs help with AT equipment, it would be to not give up, keep fighting for it," Shelby added.
Shelby said that Daren loves the device, and mastered it right away. "He can now tell me what he's thinking, what he wants to do, eat, wear, how he's feeling," she explained. "It has opened so many doors for him to be able to express himself and not have us try to guess what he is thinking." She said Daren also loves playing games with the device, and she appreciates the fact that he can do it on his own, without assistance from his parents.
"The most positive thing that came out of Daren's assessment is that he was able to show everyone how smart he really was by himself," Shelby said. "He was so proud of himself that day, and as a parent, that is the greatest gift."
The UP AT Center works with people of all ages and all disabilities, including struggling students. In addition to providing individual AT services, the AT Center is available to the community as a resource and regularly hosts informational workshops for area schools and other groups.
Locally, the AT Center provides services to school districts in Marquette and Alger counties through funding from MARESA. The Center also works with all U.P. Intermediate School Districts through funding from the Michigan Department of Education, Office of Special Education and Early Intervention Services.
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