Sale to benefit autistic boy

Seven-year-old Ethan Lanham plays with his toy truck in his parents' Fillmore home Wednesday.

Fillmore resident Julie Lanham is thrilled every time her son Ethan calls her "mama" without being prompted. But that doesn't happen very often.

The 7-year-old has autism and is essentially nonverbal. When he does speak, he is limited to about 10 words.

Autistic children have difficulty with communication and social skills. Twenty years ago, between four and five children in every 10,000 had autism, which is a developmental disorder. A 2007 Centers for Disease Control study found that 1 in 150 children now have the disorder. Some experts say the rate is as high as 1 in 144 in Indiana. Other studies say it's even higher.

Ethan's inability to communicate has always frustrated his parents.

"If he has a headache, all he can do is cry; he can't tell you what's wrong," the boy's father Ken Lanham said.

So when Ethan was able to quickly adapt to an electronic communication device his special education teacher at Central Elementary School borrowed, the Lanhams jumped at the chance to finally give their son a voice.

Unfortunately, the family cannot afford the $2,200 hand-held computer, a Saltillo ChatPC, which will allow Ethan to learn to "talk" using pictures and typing words. And after several months of appeals and letter-writing last year, the Lanhams' insurance provider Anthem Blue Cross and Blue Shield refused to pay for the device.

But Julie Lanham, who does not work so she can stay home to take care of Ethan, knew she had to do something to help her son, so she organized a rummage sale at the family's home to raise money for the device and help educate the community about autism. The sale will take place from 9 a.m. to noon Saturday at 14 Putnam St. in Fillmore and will include a table with information about autism.

The original plan was to sell the toys and clothes Ethan has grown out of, but when friends and neighbors heard of the sale, they insisted on pitching in. Julie now has a garage full of donated items for Saturday.

"The support from the community has been amazing," she said.

Despite legal protections passed by the General Assembly in 2001, educators and autism experts say it's common for health insurers to deny families of autistic children coverage for the therapies that doctors say they need.

The problem is so pervasive that Dr. John Rau, a pediatrician at the Indiana University School of Medicine, said he is surprised when a patient's insurance covers treatment and therapy for autism.

"Autism is truly the 800-pound gorilla in the room with insurance companies," said Susan Moreno, editor of the MAAP Newsletter, a Crown Point, Ind.-based publication with resources and information on autism that reaches 10,000 families nationwide.

Anthem first denied coverage for Ethan's communication device Aug. 1, 2006, on the grounds that it was not medically necessary. The company asked for a report from a speech therapist to prove that Ethan was undergoing therapy for a severe speech impairment, according to the letter from Anthem.

Four days after receiving the family's appeal and a letter from Ethan's speech therapist, the insurer sent another rejection, this time on the grounds that autism is a "developmental delay" and not covered under the policy. Speech generating devices like the ChatPC are only covered for treatment of impairment from "surgery, disease, a congenital anatomical anomaly, or prior treatment of a disease," according to the letter.

In the Lanhams' final appeal, Ethan's speech therapist, his doctor, his special education teacher Mandy Long and the coordinator of special education for Putnam County Lucy Wieland, all wrote to Anthem, expressing their opinions that the company's decision was neither medically or educationally sound.

In her letter, Long detailed how quickly Ethan learned to use the ChatPC.

"After only a few days, Ethan was able to use the device to tell his mother what he wanted to eat for breakfast and to answer questions in class," she wrote. "He had never been able to do these things!"

In spite of the appeals, Anthem rejected the request a third time, again on the grounds that Ethan's autism did not meet the criteria for coverage.

Rau, who specializes in autism and speech delays, said once an autistic child learns to effectively communicate by one method, such as an electronic speech generator, the child can usually be taught other forms of communication -- sign language, for instance.

But Wieland said the longer Ethan goes without learning to communicate, the less likely he is to express himself at all.

Moreno called it "ridiculous" that the Lanhams have had to resort to selling their possessions in order to get a device for Ethan that his doctor and teachers said could significantly increase his development.

"They're taking away his educational potential," she said. "Every day that he doesn't have the communicator, he's losing developmental time."

A spokesman for Anthem in Indianapolis did not return several phone messages seeking comment.

One other recourse the Lanhams have is the Indiana Department of Insurance, which certifies all insurance agencies in the state, reviews customer complaints and helps mediate claims.

Carol Mihalik, the chief deputy commissioner, said she is interested in reviewing Ethan's case. Often, when the department gets involved and rules that a claimant was unfairly denied coverage, the insurance company will look at similar past claims to bring their policy payouts into line with that ruling, she said.

But Julie Lanham's concern is not about fighting the insurance company; it's about giving Ethan every opportunity she can.

"I just want to give him a voice," she said. "He comes first."