Pine-based charity gives children with disabilities tools to communicate
Haley Guiste has spent most of her 14 years struggling to let her family know what she wants.
The Indiana Township teenager can't speak — she has cognitive challenges, cerebral palsy and a seizure disorder.
Does she want to go inside or outside? Is she hungry? Is she in pain?
They were questions Haley's family couldn't answer.
“She wants to tell us something and she doesn't know how,” said her mother, Julie Guiste. “She used to go through screaming phases where she'd scream uncontrollably because we just didn't know what to do with her.”
Haley now can ask questions and her family can answer them with the help of an iPad equipped with an audible communication app. The Guistes received the tablet computer from Variety the Children's Charity, based in Pine, as a part of the organization's “My Voice” initiative to aid children and teenagers with developmental disabilities.
With help, Haley can tap an image on her iPad and the device speaks a phrase or word describing what she wants to communicate.
“She's enlightened by it,” Julie Guiste said. “... She can tell us if she wants to go outside, if she wants to go inside.”
Each iPad is customized with a specific app that fits the child's needs as determined by a speech pathologist. The group has given out 50 this year, said Variety CEO Charlie LaVallee.
Many developmentally disabled children use iPads and tablet communication devices at school but don't own one, making it hard to continue learning and language progress when they're at home, especially in the summer. Variety's aim is to bridge that gap, LaVallee said.
“Are children supposed to turn their voice off at 3:30 when they go home?” he said. “We're trying to ... equip these parents to enable their kids to live as full a life as possible.”
Dozens of speech apps are available and more than 50 companies market them nationwide, but some are more sophisticated than others, said Dr. Sarah Wallace, an assistant professor of speech language pathology at Duquesne University. Apps often use photo or word images that children can tap, prompting the device to say a word or phrase, to ask a question, or to respond to one, she said.
Speech technology has been around since the late 1980s. With the advent of iPads, speech tools became more mobile. Some critics fear the iPad tools will be too much of a crutch, preventing a child from learning to speak, she said, but the iPad opens the door for conversations.
“If you're sitting at home on your computer and selecting that [image], you're missing out on the rich social interactions that happen when you can take this iPad and other ... devices out into the community and interact with peers and teachers and people in the grocery store,” she said. “All those help us develop that language.”
In most cases, there will be a learning curve for children to use the devices effectively, Wallace said. Variety teaches families and expects them to practice.
The organization started a signature bike program in 2012 and has paid for more than 750 adaptive bicycles, at $1,800 apiece, LaVallee said. Each is custom-made.
The group currently has 150 bikes sponsored and is looking for families to receive them, he said. Variety sponsors a Halloween party each year and gives away adaptive strollers. Households must meet its income requirements — up to four times federal poverty levels — to be eligible for an adaptive bike or an iPad.
The group, founded in Pittsburgh in 1927, serves 22 counties in Western Pennsylvania and 10 counties in West Virginia.
The charity took in more than $1 million in donations in 2012, according the most recent disclosure forms filed with the Internal Revenue Service. Donations nearly doubled from 2008 to 2014.
Katelyn Ferral is a Trib Total Media staff writer. Reach her at 412-380-5627 or email@example.com.