Law would aid hearing-impaired kids

From: Today's Sunbeam, NJ - 02 Mar 2003

By TERRENCE DOPP
Statehouse bureau

TRENTON -- Jeanine Gleba's daughter Grace was born to have a law named after her.

Born with moderate to severe hearing loss and wearing hearing aids in both ears, the 3-year-old Washington, Warren County, girl has inspired a movement in New Jersey to require health insurers and Medicare cover the costs of the devices.

The bill, dubbed "Grace's Law," has received support from lawmakers as far away as Salem and Bergen counties.

"As a parent this is awful. Your child can't even hear you say 'I love you,'" Jeanine Gleba said. "The main thing is communication."

The hearing devices, which amplify sounds, cost between $2,000 and $5,000 each. While most insurers cover the $50,000 to $60,000 cochlear implant therapy, Jeanine Gleba said Grace has too much hearing to receive the permanent treatment but not enough to hear fully.

The legislation has been bogged down in legislative committees. Assemblywoman Bonnie Watson Coleman, D-Mercer, chairwoman of the Assembly Appropriations Committee, said through a spokesman no date for action is yet scheduled but called the issue a priority.

"The bill is at the top of her to-do list," said Richard McGrath, spokesman for Watson Coleman. "This will be one of the first things the budget and appropriations committees look to do. We've been overwhelmed by the state's fiscal crisis."

The Gleba family and others affected see the matter as vital.

According to the American Speech Language and Hearing Association, prelingual hearing loss in children -- that which strikes before they learn to speak -- leaves children without normal development of speech and communications skills. By some estimates, those suffering from pre lingual hearing loss will suffer a 39 percent degradation in their quality of life. Sen. Stephen Sweeney, whose 10-year-old daughter has Down syndrome and wears hearing aids, is sponsoring.

"They are very expensive. Thank God I have the ability to afford to pay for them but others don't," Sweeney. "It's a shame to deny others to learn."

Jeanine Gleba agreed.

"There are so many repercussions to this," she said.

Her mother put Grace's hearing loss, which was discovered within days of her birth, in plain terms: Without her hearing aid she can hear a vacuum cleaner next to her but not normal conversations in a room.

And for growing children, the earpiece that holds the amplification portion of a hearing aid needs to be replaced every three months at a cost of $60 each. The actual amplifying device lasts three to five years, meaning Jeanine and husband Bill pay nearly $10,000 to treat their daughter.

To help Grace, the family travels 60 miles each way to drive her to school each day at the Summitt Speech School in New Providence.

Assemblyman Michael Doherty said he stands behind efforts to pass Grace's Law.

"I have sympathy for anyone with a disability and I want to make them as whole as possible," Doherty, R-Hunterdon/Warren, said.

Copyright 2003 Today's Sunbeam.