A device to help those with autism and other conditions communicate has been excluded – and then included, and then excluded again – from health insurance coverage in Washington. At issue is the process by which insurers decide what’s covered and why, which doesn’t always reflect scientific consensus.
By Michele Solis
Kaya Kesim is a little shy when meeting a stranger, retreating behind the legs of his mother, Katie Kesim. But no amount of gentle greeting, coaxing, or even clowning will elicit a reply from this brown-eyed 4-year-old, because Kaya doesn’t talk.
“After he turned one, he stopped talking altogether,” says Kesim. Soon after, he was diagnosed with autism.
But Kaya can communicate. He uses a speech-generating device, or “SGD,” which at first glance looks like an Etch-a-Sketch, its gray touch screen framed by red plastic. He carries his SGD around and uses it to request snacks, sing songs, and play.
“It has saved us a lot of temper tantrums,” says Kesim. “He used to beat his head on the wall repeatedly out of a lot of frustration.”
Life without communication is unimaginable for most of us. SGDs offer a means of communication to those with neurological conditions such as cerebral palsy, amyotrophic lateral sclerosis (think Stephen Hawking), stroke, and autism, which is a developmental disorder marked by social and communication difficulties. In giving Kaya a voice, his mother says, the device has not only decreased his meltdowns, but it has increased his social inclusion at school and his language comprehension.
Yet even as autism awareness in particular grows, some Washington health insurance companies have refused to cover SGD costs, calling the devices “investigational,” which implies that they haven’t been shown to work for autism. This riles parents and professionals alike.
Marci Revelli, a speech language pathologist who works with many different patients at Children’s Hospital in Seattle, says that these policies unfairly discriminate against those with autism. “Why are we just picking on this population?” she asks.