When Adler Utzman, 10, wants to ride his bike, needs to go to the bathroom or is feeling hungry for a cracker, he can say so. Two years ago, communicating these everyday pieces of information was impossible for the boy.
Adler can say just 12 words with his voice, but through a special app on an iPad, he is able to say much more. Adler has speech apraxia, cerebral palsy and some developmental disabilities. For years, he said nothing. Adler’s mom, Stephanie Utzman, had no way of knowing what Adler wanted or was trying to communicate throughout the day. It was frustrating for them both. But through technology, she gained a window into her son’s mind.
Adler has been using the iPad for about two years and it’s integrated into his life at home and at school. Utzman says they refer to the device as his voice and he uses it to direct his day. Through a special app designed for speech, for instance, he can touch the phrase “I want” and then an image of his bicycle and the iPad will speak these words for him. “This is a huge step for Adler,” she said.
Inspired by her own experience, Utzman started a nonprofit called Adler’s Voice to help other children who cannot speak. The group began about two years ago under the umbrella of the Central Oregon Disabilities Support Network and has helped 40 local families purchase devices — almost always iPads — and apps to help children who are almost completely nonverbal to communicate.
Last month, Utzman got exciting news. Adler’s Voice received a $40,000 grant from Meyer Memorial Trust and the nonprofit will be expanding services to help families throughout the state.
Heidi Nelson, of Bend, said many people assume her daughter, Scarlet, lacks intelligence because she uses a wheelchair and has trouble speaking. But as soon as the 10-year-old begins to speak through software on her iPad, that perception changes dramatically — and people can see her for the “vivacious, intelligent, fun-loving” girl she is, according to Nelson.
Scarlet experienced a stroke when she was 18 months old that gave her cerebral palsy and affected the speech center of her brain. Scarlet can speak, but people who are unfamiliar with her speech patterns can have difficulty understanding her.
Scarlet brings the iPad with her everywhere she goes and uses it to speak for her. “She can say exactly what’s on her mind — it’s really surprising for people,” said Nelson. “I just feel like it’s opened up a whole world for her to communicate with everyone out there. It’s really made our lives easier.”
Nelson said before Scarlet began using an iPad several years ago, “we didn’t know how much she was understanding or if she could read.” Turns out that Scarlet was understanding “everything,” according to her mom, and aside from physical challenges, is intellectually and developmentally on track.
“I think (the iPad) changes the way the world views Scarlet,” said Nelson.
Through Adler’s Voice, Scarlet was able to upgrade her iPad, allowing her access to new functions, like FaceTime and other new software. Nelson said having a child with a disability can be very expensive, between equipment and therapy. “There are never enough resources to have everything you need,” said Nelson. She credited Adler’s Voice for providing a much-needed service.
For the first two years, Adler’s Voice received most of its funding through the Cow Creek Umpqua Indian Foundation, which awarded the brand-new nonprofit a total of $20,000. Utzman says the group received some other donations as well, but most of the funds came through the Cow Creek grants. But iPads and the apps needed to transform them into effective communication tools are expensive and are not covered by insurance. The grant money went very quickly as families in need sought help.
In order to qualify for a device, the child must be referred by a medical professional such as a speech and language pathologist. The family must also meet income requirements, currently set at 300 percent of the federal poverty level. The nonprofit has also loaned out iPads to several families and offered training to 75 parents, caregivers and professionals to help them use an iPad as an alternative augmented communication device.
This work has been deeply meaningful for Utzman. When she found out that Cow Creek had declined their grant application this year after giving them funding for two straight years, she felt down. “I was feeling more than a little discouraged,” she said.
Although she had applied for the Meyer grant, she did not feel optimistic about the chances. “If you don’t have someone in your life who can’t communicate, you don’t know how hard it is,” she said. She knew, too, that many organizations were seeking funds to provide basic needs, like food and shelter. Would people funding the grants see iPads as frivolous?
Utzman had put so much into Adler’s Voice and she felt it was disappearing. “OK, this is my dream. It’s wiped out. It’s gone,” she said.
So when she received an email from Meyer Memorial Trust, she assumed it was bad news. Instead the email said the grant was being fully funded. “I was shocked. I was completely floored,” said Utzman.
Dianna Hansen, the executive director of CODSN, had a more optimistic view, based on Utzman’s abilities. “I had more confidence in her,” said Hansen.
With the award, however, comes a lot of work.
Currently a small committee reviews all applications received by Adler’s Voice. Utzman estimates the group approves about 80 percent of the applicants.
But Utzman is concerned about parents and schools committing to the device. It can take weeks, even months, for a child to learn to effectively communicate with an iPad or other device. One of the biggest issues Utzman sees is abandonment. People want the device for their child, but then do not fully implement it.
“I don’t want to award something that is not effective or is not used,” Utzman said.
She is working with the committee now to refine the application process with this issue in mind. Hansen says they are working on developing a contract that requires parents to attend trainings. “This is not something you just give a child and say, ‘Here you go, you’re good to go,’” said Hansen. “In cases we’ve seen that haven’t been as successful, the family isn’t putting time in for the kid to learn it and respecting it as a tool.”
But when families do implement the iPad effectively, Hansen says the results are exciting. “It’s just really amazing to see,” she said. When children cannot communicate, people can “presume their intelligence is really low … giving them a tool to communicate proves how smart they are,” said Hansen.
Utzman suspects the $40,000 will go quickly and wants to make sure it is used to the fullest. About $10,000 will go to pay her salary to run the program — the remainder will go to funding devices, apps and training. “I think it’s going to be very, very easy to spend the money,” said Utzman.
Hansen says the group will definitely continue to pursue additional funding.
Another challenge is making sure family members, including other children, understand that the iPad is not a toy. “That is that child’s voice,” said Hansen. “It isn’t a toy, it’s a tool.” This means no other apps on the device and no other children allowed to use it.
While the group will now open the application process to children around the state, Utzman believes there are still children in Central Oregon who need help and the priority will be to first fund applications from families in Central Oregon.
Adler’s Voice has also changed Utzman. “I have become a stronger person. I wanted to do it because there were parents who felt like they had no hope. I want to help them see the potential with their children,” said Utzman.
She knows what it feels like to have given up hope about being able to communicate with a child. And she knows what it feels like when that child can now communicate his desires. “I believe in it. I believe every child deserves to be heard,” said Utzman.
— Reporter: 541-617-7860, firstname.lastname@example.org