MANVILLE: New law will help families like Jake Whitenight’s

By Eileen Oldfield, Staff Writer
   When Lynn Whitenight called her family’s insurance company six days after her son, Jake’s, birth in 2006, she was stunned.

Family still facing


insurance hurdles
   Despite being born with health conditions affecting his hearing and other health complications, Jake Whitenight’s prognosis for surgeries to correct his hearing loss is good, his mother, Lynn, said.
   ”A successful surgery for him would be to be able to hear between zero and 30 decibels, unaided, (with a normal hearing range being zero to 25 decibels),” Ms. Whitenight said. “If he has a good result, he is expected to not need hearing aids.”
   An October 2008 visit with doctors who will correct his atresia and the bilateral microtia (see main story) said Jake’s an almost perfect candidate for the surgeries, Ms. Whitenight said. Several CT scans and other tests revealed no problems with facial nerves, which can form improperly in some cases of atresia. In addition, the tests found Jake has an ear canal on his left side, though the bone plate blocks the canal.
   ”They were jumping up and down because they haven’t had such a good candidate in 10 years,” Ms. Whitenight said. “He is solid for surgery on the left side on Aug. 10.”
   His second atresia surgery, to create an ear canal on his right side, is scheduled for November. Two surgeries, set for February and August 2010, would create an outer right ear and correct the formation of his left ear. The surgeries, Ms. Whitenight said, would allow him to wear the glasses he needs for an iris coloboma, or keyhole-shaped iris.
   Despite the family’s delight over the positive predictions, insurance will not cover the surgeries, Ms. Whitenight said.
   Since the specialists certified to perform the atresia surgery are in California, their insurance company considers them out of network. The microtia surgery is considered cosmetic, meaning the insurance company will not cover the costs. Since the surgeries and anesthesia would occur in a hospital, rather than at the specialist’s office, Ms. Whitenight believes the family could appeal those costs.
   The family is working through the Let Them Hear Foundation (www.letthemhear.org) regarding the insurance policies, Ms. Whitenight said.

   While Jake, born without outer ears or an open ear canal and other complications, lay in the Neonatal Intensive Care Unit at St. Peter’s University Hospital, Ms. Whitenight soon discovered her insurance carrier deemed the devices that would allow him to hear her voice “cosmetic.”
   ”When I originally called, and they said that to me, I laughed,” Ms. Whitenight said. “I thought that I was being given more misinformation.”
   ”I couldn’t believe there was someone reading a manual, telling me that it was not medically necessary for him to hear,” she added.
   Soon, a law signed Dec. 30 by Acting Gov. Richard Codey will require insurance companies to pay for children’s hearing aids.
   Grace’s Law, which becomes effective March 30, is named for 9-year-old Warren resident Grace Gleba. It requires hospital, medical and health service organizations, commercial insurers, health maintenance organizations, health benefits plans, the State Health Benefits Program, and the NJ Family Care Program to cover the costs of hearing aids for children 15 or younger.
   According to the law, a licensed physician or audiologist must deem the hearing aids medically necessary, and insurers may limit the benefit to $1,000 per hearing aid for each hearing-impaired ear every 24 months. Though parents can choose hearing aids priced over the $1,000 limit, they would pay any additional costs rather than insurers.
   Jake was born with bilateral microtia, which can also cause malformed or missing outer ears, and atresia, which causes a bony plate where the ear canal would normally form, and requires bone-conduction hearing aids, which transmit sounds through the bony plate.
   ”The amount they cost (Jake’s hearing aids) way exceeds what it (the law) covers, but it helps,” Ms. Whitenight said. “It’s an outstanding victory.”
   Jake’s hearing aids cost approximately $4,500 each, Ms. Whitenight said, so the $1,000 per hearing aid should help defray the cost. Since Jake wears his hearing aids externally, rather than hearing aids sitting in the ear canal, the aids do not need to be replaced to fit a growing ear canal. The units do need repairs when necessary, however, Ms. Whitenight said.
   Though Somerset County’s Early Intervention Services helped cover the cost of Jake’s hearing aids, Ms. Whitenight feels the law will help families who don’t have access to the services.
   ”We’re fortunate he’s aided, but there are so many people who are unaided,” Ms. Whitenight said. “This is for children who can’t get (county or private) aid.”
   ”Nobody takes it into effect until it hits them at home,” Ms. Whitenight said. “It is something where, unless you need to know, there’s just so much going on in the world.”
   The Whitenight family, of South 21st Avenue, Manville, first learned about Grace’s Law in October 2006, when Ellen Hanson, an audiologist at the Summit Speech School, mentioned a petition started by a former student’s family, for a law requiring insurance companies to cover hearing aids.
   Immediately, Ms. Whitenight found the petition online and called Grace’s mother, Jeanine, to pledge support for the petition and the cause.
   ”I cannot tell you the number of letters I wrote, the number of Borough Council meetings I went to, to get something passed, on a town level, to help him out,” Ms. Whitenight said.
   The borough did pass a resolution supporting Grace’s Law on Jan. 6, 2007, almost a year before its submission to the state Assembly.
   Efforts to pass the law brought the Whitenights to the state Assembly, to voice their support for the law. Though she’s not easily intimidated, Ms. Whitenight said testifying in Trenton was a jarring experience.
   ”I have never been more intimidated in my life than when I had to go testify in Trenton,” Ms. Whitenight said. “Understanding what it takes for people in Trenton to pass laws was a real eye opener for me.
   ”We were just not going to stop supporting it and making people know what it was about until something got done,” Ms Whitenight added. “It just goes to show that the more people who know about it the more successful you are about getting things accomplished.”