The Legislature recently passed a bill that would make Wisconsin the first state in the country to require insurers to cover the costs of giving deaf children cochlear implants, but some members of the deaf community are waging a furious last-minute battle to try to persuade Gov. Jim Doyle to veto it this week.
Deaf critics of the bill say that the implants are dangerous, expensive and a threat to their unique community's identity, culture and sign languages, and nearly 500 have signed a petition asking Doyle not to sign it.
Being deaf is not a medical disorder, and they do not need to be fixed, they say. "The notion that being deaf is an affliction and an abomination which alienates one from society and leaves (one) dependent and isolated is a myth," the petition reads.
Several of these critics and an interpreter were expected to show up at Doyle's office Tuesday with the petition. "We really have to make a lot of noise, to let people know who we are," said Darrell Roby, a Middleton landscaper and the president of the Madison Association of the Deaf, in an interview. "We want people to understand what deaf culture is about."
The bill has reignited a bitter divide within the deaf community over exactly what deaf culture is really about, however.
It is a debate that first gained national attention with the 1986 release of the movie "Children of a Lesser God," in which a hearing teacher, played by William Hurt, fell in love with a young deaf student, starring deaf actress Marlee Matlin, and tried to persuade her to learn oral language and join the hearing world. The conflict portrayed in that movie is at the heart of the dispute today over the Wisconsin bill.
The mandate would require insurance companies to pay not only for children's implants, but for their hearing aids and related treatments. The bill would affect only the third of Wisconsin's population currently covered by private insurance. Self-funded insurance plans are not subject to the state law, and most public insurance plans already cover the devices.
One part of the deaf community, especially hearing parents desperate to communicate with their deaf children, see implants and hearing aids as a promising new technology. Implants can turn sound into electrical impulses that activate the hearing nerve, allowing some deaf to hear. These parents hope the devices can help mainstream children who might otherwise be locked in silence.
Before Sara, 3, got hearing aids last fall, she could only speak "gibber-jabber," recalls her mother, Monica Dull of Waunakee, who was among a procession of parents who testified last month for the bill. "She would get so frustrated she couldn't communicate that she would bite her hands," Dull said in an interview. Since Sara got hearing aids last fall, Dull said, her daughter's speech has taken off. "The first thing Sara says when she gets up in the morning or after her nap is 'hearing in.'" Dull and her husband also speak sign language with their daughter.
Ann Brensel of Fort Atkinson testified that even though her family was covered by expensive health insurance, the policy refused to cover the implants, calling them "cosmetic." "I just didn't understand that the insurance I have paid thousands of dollars in premiums for could be so cold about helping a child," Brensel told legislators. Abby, now 4, needed to wait nearly two years before she could get an implant and suffered significant language delays as a result, her mother said. "We lost precious time," she said. Abby can now dance to music and hear and recognize her name and her mother's voice.
But deaf critics of the legislation argue that the devices don't always work and are invasive and an insult to their unique identity. They say that requiring the deaf to use speech rather than sign language to communicate is a form of discrimination. "Many of us in the deaf community see cochlear implants as a big threat to our culture," said Roby, 38, who used a video phone and a sign language interpreter to speak to a reporter.
Roby is the fourth generation in his family to be born deaf. His parents, grandparents and great-grandparents were all deaf, and he grew up communicating in American Sign Language. It wasn't until his parents pulled him out of public school in Madison and sent him to the Wisconsin School for the Deaf in Delavan, where classes were taught in sign language, that he flourished.
"It opened a whole new world for me," he said. "I became a leader and the class president." He believes that even children who receive cochlear implants won't thrive unless they are also taught American Sign Language, like him. The petition asks that insurance be forced to cover the costs of providing ASL materials, therapy and support to children as well.
Other critics have complained that the bill would drive up insurance costs for small businesses and employers already struggling with hefty premiums.
Rep. John Nygren, R-Manitowoc, noted in an interview last month that the cochlear implant bill is just one of several insurance measures being pushed by his Democratic colleagues in the Legislature this year. "When you look at the costs, it may not seem like much, but when you add them up altogether there is a big concern that we could be pricing people out of their ability to get health insurance," he warned.
A financial analysis recently submitted by the state Office of the Commissioner of Insurance to the Legislature, however, would suggest otherwise.
About 200 babies are born in Wisconsin each year with hearing problems that might require a hearing aid or implants, according to the report. A total of 2,137 students in the state public school system are deaf or hard of hearing, and 713 of them are deaf and may have an implant. Hearing aids cost more than $4,000 per child, and implants and related therapies could cost upwards of $50,000 to $60,000. Using these figures, the report calculated the total cost to the state insurance industry to come out to around $3.2 million a year. But when you take into account the $8 billion the insurance industry collects annually in health premiums, the report estimated that the mandate will end up costing each privately insured person only 17 cents a month in additional premiums.
That figure is even less significant, state officials noted, when you compare it to the costs of special education services for children who don't receive the devices. "Basically what was happening was that insurance companies were shifting these costs onto taxpayers," said state Sen. Julie Lassa, D-Stevens Point. "When a child does not get access to cochlear implants or hearing aids at a young age, it adds to the costs of special education and vocational rehabilitation later in life."
Yet the most powerful arguments made by those in the deaf community who oppose the bill are not economic. They are personal.
Mat Fowler, a 32-year-old carpenter who lives in Rothschild, was the second child to receive a cochlear implant in Wisconsin way back in 1990, he said in a videophone interview. He was 14 and did not want the implant, but agreed to try it. "I wanted to prove my love for my parents," he said. His parents are not deaf. Receiving the implant was a "culture shock," Fowler said. Suddenly he felt tremendous pressure to succeed and communicate in entirely new ways. When he was 18, he said, he took the external part of the implant off. Just last year, he underwent surgery in Milwaukee to remove the internal portion. He and his wife, who is deaf, have three sons. All three can hear and are doing well. They are bilingual, able to communicate in both spoken and sign languages.
Fowler says he opposes the bill, but can see the arguments on both sides.
"It's very conflicting for me," he says. "I see families who are heartbroken when they find out their baby is deaf. But I also worry that they will be given false hopes with the implants."
*SIGN THE BILL!!*
I am in Italy where the National Health Service paid for EVERYTHING, one less drama to deal with economically. Parents have the right to choose, FACILITATE that choice!
To write a letter to the governor in SUPPORT of this bill, clickhere.
Please help circulate the news on the Blogosphere by posting in support of this bill...Generate some NOISE.