Award for Grace’s Law
AG Bell presented the 2013 AG Bell Award of Distinction to Jeanine Gleba for her advocacy effort to pass Grace's Law-New Jersey's hearing aid insurance mandate-at a reception at the New Jersey Chapter of AG Bell at their Annual Meeting held on Sunday, April 27. The law is named in honor of her daughter, Grace, and requires all health insurers in New Jersey to provide up to $1,000 coverage for each hearing aid prescribed for children age 15 and younger.
The AG Bell Award of Distinction recognizes an individual or organization outside the professional fields of education or (re)habilitation of individuals with hearing loss who has made an outstanding contribution to hearing loss issues.
"Jeanine Gleba is an inspiration to grassroots advocates everywhere. She exemplifies the type of leader that is honored with this award," said Emilio Alonso-Mendoza. "I am beyond honored to receive this prestigious award," Gleba said. "This was always about righting a wrong and giving these children a voice of their own and improving the quality of life for any person with hearing loss."
Jeanine Gleba's daughter, Grace, was born with a severe sensorineural hearing loss in each ear, which was discovered during a voluntary hearing screening that was performed when she was born in 1999 (mandated hearing screening in New Jersey took effect the following year). When Gleba began her journey to obtain early intervention services for her daughter, she found out that her employer's self-funded health plan would not cover the cost of hearing aids for Grace. Gleba filed a complaintwith the Equal Employment Opportunity Commission, which ruled in her favor a year later.
Gleba lives in New Jersey where approximately 1 in 1000 children are born with a hearing loss. With newborn hearing screenings required by law in her state starting in 2000, and the subsequent identification of hearing loss for manychildren at birth, Gleba felt that newborn hearing screening by itself was futile if children with hearing loss could not get appropriate and affordable amplification.
Gleba initiated a grassroots advocacy effort. It took nine years, and numerous bills that had been introduced in six legislative sessions since 1999, until her legislative effort won the support of 57 sponsors in both houses of the state legislature, which was then signed into law on December 30, 2008.
She used strategies gathered from an advocacy summit hosted by AG Bell to garner support for the bill. Strategies included
- mailing flyers with updates and advocacy action items to supporters;
- creating and sending e-bulletins;
- building a website with the help of a volunteer;
- launching an Internet petition that garnered 8,400 signatures;
- harnessing the support and enthusiasm of other families;
- participating in awareness and fundraising activities related to hearing loss; and
- attending any committee hearings related to the bill.
Despite opposition from insurance companies and a general unwillingness among legislators to pass any legislation with a fiscal impact, the bill finally passed the full assembly in 2008, gaining sponsors from every district in the state.
Gleba continues to work for expanded hearing aid coverage for children. Her dream is for insurance coverage for hearing aids to become a reality on the national level and to be standard inclusion for all policies.
To learn more about Grace's Law download the free e-book, "Warrior Mom's Guide to Passing a Law" at www.graceslaw.com.