April 14, 2009 Feature

A Mom With a Mission

Grace's Law in New Jersey Requires Insurance Coverage of Hearing Aids

Beginning March 30, New Jersey insurance companies will be required to cover $1,000 per hearing aid every 24 months for children 15 years old or younger for new insurance plans. For existing plans, the law takes effect on the renewal date.

Acting Governor Richard Codey's signature of the bills (S-467 and A-1571) into law on Dec. 30, 2008 (Gov. Jon Corzine was out of town), culminated a legislative effort that won the support of 57 sponsors in both houses of the state legislature. The new law is the result of numerous bills that had been introduced in six legislative sessions since 1999.

The subsequent ceremonial signing with Gov. Jon Corzine marked the end of a nine-year advocacy effort led by Jeanine Gleba in Washington, N.J., on behalf of her 9-year-old daughter, Grace, and the one in every 1,000 children born in the state with hearing loss who need hearing aids.

Mom with a Mission

Grace was fortunate to be identified in 1999 through voluntary newborn hearing screening efforts; mandated newborn hearing screening took effect a year later. When Grace's moderate-to-severe hearing loss was later confirmed, Jeanine Gleba took steps to obtain early intervention services on her own, contacting the Summit Speech School in New Providence, where Grace received services throughout her preschool years.

Gleba contacted her insurance company about coverage for her daughter's hearing aids, but learned that they were not covered under the self-funded plan unless the hearing loss was due to illness or accident.

"I couldn't believe that my ex-employer—a large telecommunications company—would deny my daughter hearing aids," she said. Gleba filed a 1999 complaint with the Equal Employment Opportunity Commission, which ruled in her favor a year later.

During Grace's first year of life, Gleba read a newsletter article about hearing aid insurance legislation. When Gleba contacted the legislator involved, he referred her to Carol Granaldi, who founded the initial movement to enact hearing aid insurance legislation in New Jersey. Granaldi became a mentor, friend, and inspiration to the Glebas.

"I was a mom with a mission," Gleba said. "It burned me up that insurance companies denied hearing aids for children with hearing loss. What good is newborn hearing screening if children can't get proper amplification?"

Gleba knew nothing about the legislative process. Supporters encouraged her to testify at committee meetings, and soon she was selected to attend an advocacy summit hosted in Washington, D.C., by the AG Bell Association for the Deaf and Hard of Hearing. Gleba came back armed with advocacy strategies and began to mail flyers with updates and advocacy action items to supporters. With the advent of the Internet in the 1990s, Gleba sent out e-mail bulletins, established a Web site with the help of a volunteer, and launched an Internet petition that garnered 8,400 signatures.

Over the years more families joined the grassroots advocacy efforts, which gained media coverage from local and national TV and radio outlets. Last May a Better Hearing and Speech Month event at the Summit Speech School was attended by legislators, who were presented with certificates recognizing their support. In October 2008, the Grace's Law team fielded one of the largest teams in the country at the New Jersey Walk4Hearing, raising $7,200 for the Hearing Loss Association of America.

Overcoming Obstacles

Despite the growing momentum, there were huge obstacles. Because of New Jersey's dire financial situation, it is nearly impossible to pass legislation with fiscal implications, and any proposed mandate required review by an advisory commission. ASHA weighed in with public testimony to the commission, which completed a study—at a cost of $25,000 to taxpayers—and determined that this legislation would boost the cost of premiums by only 0.07%. Yet insurance companies continued to oppose any mandate.

Not once did Gleba miss a committee hearing, and in the early years, she and Grace often were the only ones to testify. As a result, in 2002 a committee chair amended the bill to be known as "Grace's Law."

"I became too involved to quit," Gleba said of the nine years spent advocating for the bill. "Every time I wanted to throw in the towel, something would happen that gave me hope."

In 2008 the legislation passed the full assembly, and the growing group of advocates focused efforts on the senate, gaining sponsors from every district. The strongest voices in support were Grace and the other children who benefitted from hearing aids and early intervention and were able to speak clearly to win passage of the legislation.

Even with the new law, people who have self-funded insurance plans are learning that those plans are exempt from the mandate. Under the Employee Retirement Income Security Act (ERISA) of 1974, self-funded health plans are exempt from state insurance laws.

"It's a national problem," Gleba said. "We need insurance industry reform to make hearing aids a standard benefit."

For more information on Grace's Law, visit www.graceslaw.com.

Susan Boswell, assistant managing editor of The ASHA Leader, can be reached at sboswell@asha.org.

cite as: Boswell, S. (2009, April 14). A Mom With a Mission : Grace's Law in New Jersey Requires Insurance Coverage of Hearing Aids. The ASHA Leader.


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