The Passage of Grace's Law in NJ 

Nine-year-old Grace Gleba has worn a hearing aid in each ear since she was 3 months old. Without them, a shout sounds like a whisper to Grace, who was born with a severe sensorineural hearing loss. And as a result of her mother’s crusade to require insurance coverage for hearing aids for New Jersey children, other youngsters in the state will be able to distinguish between shouts and whispers too. Grace’s Law went into effect on March 30, 2009.

“There are a lot of decisions when you first find out your child can’t hear,” says Jeanine Gleba, Grace’s mom. “One of the decisions is what form of communication you want your child to have. There’s total communication [which uses sign language, voice, finger spelling, lip reading, and more]. There’s oral. There’s sign language.”

Because there’s no family history of hearing loss, the Glebas chose the oral approach, hoping to amplify what little their daughter could hear to a level that would allow her to develop normal language and speech. So when Grace was 12 weeks old, her parents had her fitted for hearing aids. That’s when they discovered their insurance company didn’t provide coverage for the devices.

Hearing things
“It was ludicrous, when you think of so many things they [insurance companies] do cover,” Gleba says. “We would argue that this is a prosthetic device. This is a wheelchair for the ear. We had every argument, but [the insurance company] just considered them cosmetic—and a luxury item.”

Grace’s first pair of hearing aids cost about $1,600. The most recent pair, bought last year, had a $4,000 price tag. And that doesn’t include the cost of replacing the ear molds every six months, or the batteries every two months, or the simple wear and tear a child can inflict on an expensive piece of technology.

“Why wouldn’t they be covered, especially for children, because those are the critical years of language and development?” Gleba says she asked herself. “How can you deny somebody the opportunity to hear and communicate?”

When Grace was an infant, only 12 states required insurance companies to pay for hearing aids for children. Jeanine Gleba decided it was time for New Jersey to become the thirteenth. Year after year, she took her case to state lawmakers in Trenton, with Grace sitting on her lap as a toddler, then testifying on her own as she grew older. “Putting a face to it is really what made the difference,” Gleba says.

Other families with hearing-impaired children joined the effort. The children enlisted their classmates to write to Governor Jon Corzine and state legislators, urging them to pass hearing-aid legislation. And this year, their efforts paid off: the passage of Grace’s Law comes almost 10 years since Jeanine and Grace Gleba began their fight.

A fair hearing
Grace’s Law requires all state and many private insurers to cover up to $1,000 per hearing aid every 24 months for medically eligible children aged 15 and younger. However, with the exception of the State Health Benefits Plan, the law does not apply to self-funded insurance plans (employers with self-funded plans are exempted from state mandates by ERISA, the Employee Retirement Income Security Act). In addition, hearing-aid coverage did not automatically kick in for everyone on March 30; individual coverage becomes available when an employer renews the company’s health benefits.

Hearing loss is the number one birth defect in America. Each year in the United States, more than 12,000 babies are born with a hearing loss, according to the Centers for Disease Control and Prevention (CDC). The CDC estimates the direct and indirect costs for a hearing-impaired person will total $417,000 over his lifetime.

“If not treated at an early age, hearing loss can impede speech, language, and cognitive development, which can, in turn, lead to the need for costly special education services later on in life,” State Senator Barbara Buono, a prime sponsor of Grace’s Law, was quoted as saying in the online bulletin NJ Senate Democrats. “A thousand-dollar hearing aid today can save hundreds of thousands of dollars down the road and help a hearing-impaired child live a full and happy life.”

Case in point: Grace is an honor-roll student who serves on her school’s student council. She loves gymnastics and cheerleading and thinks her hip-hop dance class is “cool to do.” And she sings in the school choir, something that would have been unimaginable had she never been provided with hearing aids. “I like when I get chosen to sing a solo,” she says.

“Hearing aids have made all the difference in the world for Grace’s life and lifestyle,” adds her mom. “The effect is immeasurable. She is able to live and function normally in every aspect of her life. Most of all, she is able to hear and speak and be so successful in all that she does.”
 

The Causes and Effects of Hearing Loss

Conductive hearing loss occurs when there is hole in the eardrum, fluid in the middle ear, or wax in the ear canal—all of which can usually be treated with medicine or surgery, says Boys Town National Research Hospital, a specialized facility in Omaha, Nebraska that treats hearing loss and disorders. Sensorineural hearing loss, which usually cannot be helped by medicine or surgery, occurs with certain infections before birth, from a lack of oxygen during birth, or from genetic causes; a hearing aid can help in most cases.

While an estimated 1.4 million youth have hearing loss, only 12 percent wear hearing devices, according to a national study recently released by the Better Hearing Institute (BHI). Untreated hearing loss among young people was shown to lead to social, emotional, behavioral, and learning difficulties, according to the study. Three out of four parents indicated their child experienced “minor” to “serious” problems due to their hearing loss.
 

New Jersey Mandate

In New Jersey, all babies born in hospitals receive the noninvasive Universal Newborn Hearing Screening (UNHS) test within days of birth (unless parents object on religious grounds). If hearing loss is identified, audiological evaluations follow, and the child may be enrolled in Early Hearing Detection and Intervention (EHDI) programs.

If a child is not screened within one month of birth, the average age at which hearing loss is identified in children is 2 to 3 years old, according to the Centers for Disease Control and Prevention (CDC). By that point, the CDC says, you should have started seeing signs of delay. Be on the alert if your child:

• Does not turn to the source of a sound by 3 to 4 months of age.
• Pays attention to vibrating noises or noises that can be felt, rather than heard.
• Does not say single words, such as “dada” or “mama,” by 1 year of age.
• Turns her head when she sees you, but not if you call her name. This is usually mistaken for not paying attention or ignoring, but could be a partial hearing loss.
• Hears some sounds but not others.

If you suspect a hearing loss, bring any concerns to the attention of your pediatrician. Diagnosed and treated early enough, children with hearing loss can learn to communicate to their fullest potential.

Mary Ann McGann lives in New Jersey and is a senior writer at family.

Photograph by Tim Larsen.

May 2009

Local Resources

Bloomfield Institute Of Physical/Occupational Therapy

website

825 Bloomfield Ave.
Verona, NJ 07044
973-239-1176

230 Broad St.
Bloomfield, NJ 07003
973-680-1971

Childworks Therapy Center

32 Gibraltar Drive
Morris Plains, NJ 07950
862-219-5678
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Creative Speech Solutions

151 Summit Ave.
Summit, NJ 07901
908-598-0228
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Signs Of Success Agency
39 Broadway Lane
Fairfield, NJ 07004
973-882-1725
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Speech and Hearing Associates

Located in Avenel, Cliffside Park, Martinsville, Park Ridge, Randolph, and Secaucus
800-742-7551
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Sperling-Ratiner Speech Pathology

272 Main St.
Metuchen, NJ 08840
732-321-1780
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