It has been nearly 10 years since New Jersey enacted “Grace’s Law,” which requires insurance coverage for children age 15 or younger to receive hearing aids.

 

As we mark Better Hearing and Speech Month in May, this law still serves as a shining example of what can be done by one New Jerseyan on a mission to right a wrong. And, in this era of highly-political, ever-changing health care policy in Washington, it remains an example of the humanity and compassion that politicians must include in the debate.

 

I want to focus on Jeanine Gleba, of Warren County, whose daughter, Grace, began wearing hearing aids at three months old. Gleba took a crash course in state politics six months later, when she learned the family’s health insurance company would not reimburse the costs for Grace’s hearing aids, now upwards of $3,000 per aid.

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Others had expressed similar concerns; proposed bills had come and gone through the state Legislature over the years. Gleba packed up her daughter and headed to Trenton in 2002, when they were the only ones in attendance to voice support for one of these bills.

 

If this legislation had a chance, Gleba realized it was time to get more involved. She contacted state lawmakers, sharing her story and ultimately having a bill named in honor of Grace. Getting the legislation passed through Trenton became Gleba’s one-and-only hobby, as she watched Grace’s Law get re-introduced on four separate occasions and face resistance from the health insurance lobby and business groups worried it would drive up costs.

 

From meeting to meeting, Gleba watched the wheels of progress in Trenton move painfully slow.

 

Grace was also a key voice in the discussions and was there when Gov. Jon Corzine signed Grace’s Law on December 30, 2008, ensuring future generations of children can receive the gift of hearing to help succeed in school and to build lifelong friendships.  NJSHA was pleased to be an advocate through the entire legislative process.

 

Today, Grace continues to advocate for the importance of hearing aids. She now wants to pursue a career in the field of audiology. In September, Grace will be attending Penn State University to study honors courses in Communication Sciences and Disorders. 

 

Grace’s Law remains a little-known law and its existence needs to be amplified.  As a member of the New Jersey Speech-Language-Hearing (NJSHA) Association, I am proud that we supported the Gleba family through the legislative process.  Grace’s Law is ideal to note, and to celebrate, because it recognizes the critical importance and basic right that all children should be able to hear. 

 

As an audiologist, I work with children who are struggling in school and in social settings because of hearing problems. Even in this modern day, with Grace’s Law and other stop gaps in place, I am dismayed and daunted by the number of children with untreated hearing loss.

 

The story is not over for Grace’s Law.

 

In 2010, with the passage of the Affordable Care Act (ACA), Grace’s Law was defined as an “essential health benefit” in New Jersey. Grace’s Law was originally passed with a coverage limit of $1,000 per hearing aid. But, under the ACA, that limit was removed with the critical patient protection prohibiting lifetime and annual caps on insurance benefits.

 

Gleba is doubtful New Jersey will enact any new hearing aid legislation any time soon, as the ACA requires any state that adds any additional mandate to pay for the expense. I agree with her; the state will be hard pressed to consider legislation that would cover all people, not just children up to 15.

 

There is also the “Repeal and Replace” debate raging on Capitol Hill, which puts into question if Grace’s Law will remain an “essential health benefit” and targets many other pre-existing conditions, as well. Regardless of one’s political affiliations, patients with pre-existing conditions must be protected and have access to affordable, quality healthcare for their medical needs.

 

Gleba will be closely watching bills in Washington and Trenton, as will NJSHA. It is important that many other citizen advocates recognize the power they have to make real change on behalf of their loved ones. In this highly-charged political climate, their voices are more important than ever. More importantly, our elected officials should not make hasty decisions without first listening to the citizens they represent and the patient-centered organizations also speaking on their behalf.

 

The author, Marykate Vaughn of Cranford, is a member of the New Jersey Speech-Language-Hearing Association.