Assembly listening to needs of Warren County toddler

From: The Express Times, PA - 01 Mar 2003

Bill offers help for those who can't hear.

By TERRENCE DOPP
The Express-Times

TRENTON -- If Jeanine Gleba's daughter Grace could hear, she'd hear they're talking about her.

Grace was born with moderate to severe hearing loss and has worn a hearing aid in both her ears. The 3-year-old Washington 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 Gloucester and Bergen counties.

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

The hearing devices amplify sounds and cost between $2,000 and $5,000 each.

Jeanine Gleba said most insurers cover the $50,000 to $60,000 cost of cochlear implant therapy. But Grace has too much hearing to receive this permanent treatment and not enough ability to hear fully.

Legislation to bridge this treatment gap has become bogged down in legislative committees.

A spokesman for Assemblywoman Bonnie Watson Coleman, D-Mercer, chairwoman of the Assembly Appropriations Committee, said no date for action is scheduled but nevertheless considers the issue a high priority sidetracked by more pressing budget problems.

"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 with this disorder see the legislation as vital.

According to the American Speech Language and Hearing Association, prelingual hearing loss in children -- meaning the hearing loss strikes before they learn to speak -- leaves children without normal development of speech and communications skills. By some estimates, those suffering from prelingual hearing loss will suffer a 39 percent degradation in their quality of life.

State Sen. Stephen Sweeney, whose 10-year-old daughter has Down syndrome and wears hearing aids, is sponsoring the legislation.

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

Jeanine Gleba agreed.

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

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

For growing children, the ear piece that holds the amplification portion of a hearing aid must 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.

The family also 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," said Doherty, R-Hunterdon/Warren.

Copyright 2003 The Express-Times.