Max Frazier, 4, grabbed the Dyna Myte 3100 off the coffee table and punched a couple of pictures on the keyboard.
“Hi, my name is Max,” an electronic voice said, “and this is my talking device.”
Max smiled.
His parents said that smile is worth the yearlong fight against their insurance company to get their son the speech-augmentation device. Max has a nerve condition that prevents functional speech.
Parents of children with unique health needs, such as Cornelia and Rick Frazier of Kansas City North, have long battled insurance companies over money for treatments and equipment — even if the measures were prescribed by doctors.
The parents’ stories often portray insurance companies as greedy and uncaring. But insurance industry representatives say their hands often are tied by the coverage terms of insurance policies.
So a Kansas City agency, the Children’s Benefits Service for Families, is getting both sides to the negotiating table. The agency has organized a committee of parents, social service agencies, employers and health insurance companies to study the problem and to try to increase access to health care for special-needs families.
The project, paid for by the U.S. Department of Health and Human Services, is called ECHO: Enhancing Child Health Outcomes for Children with Special Health Care Needs.
Samara Klein, executive director of Children’s Benefits Service, doesn’t want the new panel to be perceived as “good guys and bad guys.” Klein hopes the group’s work will change adversity into partnership.
And that would make her agency’s job much easier.
“We help a few hundred families a year,” Klein said. “There are thousands out there.”
Joy Wheeler, administrator of FirstGuard Health Plan, an HMO that provides health coverage to 70,000 residents of Missouri and Kansas, said the criticism directed at insurance companies is often unfair.
“It’s easy to say that insurance companies are mean and evil when they decline to pay, but sometimes those things just aren’t covered by the policy,” Wheeler said.
She poses the question: Who wants to volunteer to pay higher monthly premiums for health insurance so co-workers can get coverage for their special-needs children?
Becky Kacirek, ECHO project director, understands insurance companies’ financial concerns but said the companies must be more willing to help families whose children have cerebral palsy, autism and other diseases that require special treatments.
The disease puts stress on parents, Kacirek said. Financial worries make matters worse.
Typical treatments include speech therapy, occupational therapy, medical beds, wheelchairs and — as in Max Frazier’s case — speech-augmentation devices.
“These aren’t about life and death, but they are about quality of life,” Kacirek said.
Wheeler, the FirstGuard administrator, agrees, but said those treatments often aren’t included in group policies, which typically are designed for families with no special-needs children. Additional coverage usually means higher premiums, Wheeler said.
Wheeler, who serves on the ECHO task force, thinks improvements can be made. For starters, she would like for insurance companies to be notified immediately when a special-needs child is added to a policy.
“We usually don’t know anything about this child until the parents file a claim,” Wheeler said. “We want these kids to get what they need.”
Perhaps, she said, special-needs children could be “pooled” by insurance companies.
Klein said Max Frazier is a good case study of fights that could be prevented.
Max was less than a year old when his mother knew something was wrong with her son. Tests showed that he had “myelin disorder” — he lacks the fatty covering on his nerve fibers. The result: Messages from his brain often don’t reach their destination.
In September 1999, doctors recommended the Dyna Myte 3100, which would allow Max to communicate by pointing to pictures.
But the family’s insurance company declined to pay $6,500 for the device, saying that Max’s condition was developmental rather than medical.
Max’s family argued that Max’s brain was fine — it was the lack of myelin that caused his inability to speak.
For a year, the sides traded phone calls and letters. The insurance company insisted that Max be examined by other doctors. Rick Frazier, a fifth-grade teacher, said he often spent his 25-minute breaks talking with insurance company representatives.
The Fraziers eventually reached their limit.
“We’ve done everything you’ve asked. … What more could you want?” Cornelia Frazier asked the insurance company. “This is our son.”
Last month, nearly a year after the claim was filed, the company agreed to pay.
“They (the insurance company) gave up because they knew his mama wasn’t giving up,” Cornelia Frazier said.
But the Fraziers say it was a hollow victory because the company never admitted it may have been wrong.
“We didn’t educate them; we wore them down,” Rick Frazier said.
The administrator for the Fraziers’ HMO said the company does not comment on policy holders. But the administrator, who also serves on the ECHO task force, did say that decisions can be changed during appeal processes.
Wheeler doesn’t work for the company that insures the Fraziers, so she was unable to explain the company’s behavior.
“If it’s covered — pay it, it’s easier that way,” Wheeler said.
