(NEW YORK) — Zachary Stewart, an 11-year-old who goes by the name of “Bubba,” has been thrown out of two schools and has even been punched in the head during ballet class — all for having the behavior problems associated with autism.
But one of the worst blows to his family is a financial one. His insurance company in his home state of Utah does not pay for diagnosis or treatment of autism — a spectrum of disorders that now affects 1 in 88, with five times as many boys than girls.
The bills for Bubba’s therapy cost $150 a session, and he does at least one a week.
“We still rent,” said Blythe Stewart, 34, of Murray Lake. “We had over $25,000 in savings to make a down payment on a house. Our entire savings was drained. We have claimed bankruptcy twice. Our credit score is 500 and we can’t qualify for a mortgage.”
Bubba is unable to eat certain foods and he has to have particular kinds of clothes because of his sensory issues, all of which add up, said his mother.
“His grandfather nicknamed him ‘Thumper’ because he rocked so hard he’d bang his head on the high chair and the crib,” said Blythe.
The Stewarts have considered moving out of Utah.
“But it’s impossible because of our financial situation,” she said. “I’ve lost more jobs because my son has a meltdown or has an accident in the bathroom at school, and a lot of employers are not understanding about this.”
Tuesday, on International Autism Awareness Day, 32 states have required state-regulated health insurance plans to cover autism according to Autism Speaks, an organization that advocates for families.
Autism spectrum disorders are developmental disabilities that can cause significant social, communication and behavioral challenges, according to the Centers for Disease Control and Prevention (CDC). Treatments include behavioral, occupational and speech therapy, and experts say early intervention is critical.
Bills to mandate coverage for care are moving along with success in Hawaii, Minnesota and Nebraska, but Autism Speaks is pushing for a law in all 50 states and calling on Congress to mandate all companies not under state jurisdiction to authorize care.
Many companies who self-insure, like Microsoft and Oracle, have already voluntarily done so, according to Autism Speaks spokesman Rick Remington.
“We are calling on the president for a national plan for autism,” he said. “Prevalence is on the rise, and we are calling out the government to say enough is enough.”
Copyright 2013 ABC News Radio
Daniel Lombardi, Deseret News
Jennifer Graham, Deseret News