Cathy and Cesar Martinez noticed an abrupt change in their 20-month-old son, Jacob, in 2005.
Within months, he lost all language skills. He would no longer make eye contact with others or respond when his name was called.
He stopped playing.
He spent most of his time sitting in the corner, banging his head against the wall.
When Jacob was diagnosed with moderate to severe autism, his parents immediately began private speech and occupational therapy for Jacob.
"We saw minimal progress, if any, at all, that first year," Cathy Martinez said.
They sought out a local pediatric behavioral psychologist specializing in autism spectrum disorders, who recommended a treatment called Applied Behavioral Analysis, which is based on theories that behaviors can be taught through a system of rewards and consequences.
It would cost $62,000 a year.
"She warned us that insurance will not pay for autism treatment in the state of Nebraska," Martinez said. "We left feeling devastated, that a treatment existed that could help our child, but our insurance refuses to cover it."
On Tuesday, the Legislature's Banking, Commerce and Insurance Committee discussed a bill (LB505) that would require insurance companies to pay for autism diagnoses and treatment.
The bill's sponsor, Sen. Colby Coash of Lincoln, said Nebraska is one of 18 states that do not require insurers to do so.
"Science has clearly proven that autism is a neurological disorder that can respond extremely well to treatment, especially early intervention therapy," Coash said. "The time for coverage is long overdue."
Autism is a disorder of neural development characterized by impaired social interaction and communication, and by restricted and repetitive behavior.
The increasing number of people diagnosed with autism makes it the fastest-growing serious developmental disability in the United States. No one knows what causes autism. Research indicates autism is triggered by "environmental factors" and possible genetics, but exactly what those factors are remains unknown.
There is no cure for autism, although medical professionals agree the earlier the disorder is diagnosed, the better the results. Early intervention and behavior therapies can help children overcome some aspects of the disorder.
The Centers for Disease Control estimates that one in 88 children have autism spectrum disorder.
Coash said Nebraska families with autistic children are “either left without coverage, left bankrupt seeking treatment or even leave our state to find treatment elsewhere.
"Thirty-two other states require coverage, including our neighbors Iowa, Missouri, Kansas and Colorado," he said. "Now is the time to ensure our Nebraska families obtain effective treatment for autism, and this bill is the vehicle.”
Coash's bill would require up to $70,000 a year in coverage for behavioral health treatment, such as Applied Behavioral Analysis, for the first three years of treatment. The limit would be $20,000 annually thereafter until the age of 21.
As for the Martinez family, they spent some $250,000 on Jake’s ABA program from 2006 through 2011, and eventually had to file bankruptcy.
"The benefits to our child and family far outweigh the monetary cost and the embarrassment of filing bankruptcy," Cathy Martinez said. "Our son, who once sat in a corner slamming his head against the wall, now can independently toilet, write his name, eat with utensils, play games with other children, dress himself, add and subtract, brush his teeth, get a haircut and type sentences and reports at school. Jake can look me in the eye again and responds when we call his name.
"It’s time to put Nebraska’s children before big business," she said. "It’s time to do the right thing for Nebraska."
The bill was opposed by the Nebraska Insurance Federation and the city of Omaha, among others.
Ron Sedlacek, representing the Nebraska Chamber of Commerce and Industry, expressed concerns about the affordability of such "mandated benefits."
"Who's going to pay for it?" he said.
He also said it was not clear how such a plan would play out under the new federal health care law.