Interview with Jeanine Gleba

Carolyn Smaka: Welcome Jeanine, and thank you for your time today.

Jeanine Gleba: Thank you, Carolyn.

SMAKA: For readers who may be unfamiliar with Grace's Law, can you please give some background?

GLEBA: I'd be happy to. My 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. She has worn hearing aids since she was 3 months old. During the process of obtaining hearing aids for Grace, I very quickly found out that insurance companies are not required to offer any assistance to individuals who need hearing aids. Since it's not required, many don't, or they limit hearing aid coverage to their most expensive plans. We live in New Jersey, where approximately 1 in 1000 children are born with a hearing loss and, now that newborn hearing screenings are required by law, many are identified at birth. It's wonderful that children are being identified earlier than ever before, but what good does that do when the cost of assisting the child is prohibitive for many families? Grace's Law is now a law in New Jersey that requires all health insurers in the state to provide up to $1,000 coverage for each hearing aid prescribed for children 15 years old and younger, with the exception being self-funded plans which are protected federally under Employee Retirement Income Security Act (ERISA) and do not have to follow state mandates. Getting the law passed was a long process over many years, but it was finally signed into law on December 30, 2008.



NJ Gov. Jon Corzine and legislators meet with NJ children who have testified over the years in support of Grace's Law at a special ceremonial signing of the law.

SMAKA: It is hard to understand why a basic treatment for hearing loss would be denied by most insurance plans;especially in light of the fact that cochlear implants, which are far more costly than hearing aids, are covered.

GLEBA: That was always one of our arguments in our persuasive letters to legislators and in our testimony. We should not diminish the fact that cochlear implants are covered, but why not cover hearing aids as well?

The signing of Grace's Law is a huge victory for children with hearing impairment. I hope more states follow suit. You need to understand that, over the years, the terms of Grace's Law were watered down. Many people don't know that there are still hearing aid bills languishing in New Jersey, even one of that has no age restriction. That was the first bill I was involved with. Later on, someone introduced a bill, which would have allowed full coverage for hearing aids for children age 18 and younger. I became involved with that one too. Another bill was introduced for children 12 years old and younger. Eventually the bills were combined. When the bills were combined, Grace's name stayed on the bill but, in the end, the age limit was set at 15 years, and rather than full coverage, the benefit was set at $1000 per hearing aid. While it's better than nothing, it is not a lot when you consider the cost of hearing aids, and especially when you consider that some states offer full coverage. However, the children's bill was the only bill to move out of committees.

The requirements for hearing aid insurance benefits should be addressed on a federal level. I fully support the Federal Hearing Aid Tax Credit (www.hearingaidtaxcredit.org), but it simply is not enough. It is only a credit, and a $500 one (per ear) at that. Hearing aids average over $2500 per aid now. Plus, it is only for dependents and those who are 55 and older. Due to age, a large portion of the population is not eligible for the tax credit, and it only makes a small dent in the overall cost of hearing aids. However, I recently learned that a Senate bill has been introduced in the House that would cover all ages so that would be much better! I realize that every little bit helps, but I don't understand why we don't push for full coverage on a federal level for hearing aids, which are often the only treatment for hearing loss.

SMAKA: Tell me about the process of getting Grace's Law passed. I have no idea of what it takes to pass legislation.

GLEBA: It is an incredibly complicated process and, like you, most people don't understand how it works. When we started, I had no idea either;my understanding of how a bill becomes a law was based on the song "I'm Just a Bill" on the show "Schoolhouse Rock" from when I was a kid. It entails much more than just writing up a bill and then presenting or testifying. There is a long process involved. Before there is a vote, the bill has to be posted in a committee, which can take a long time, particularly if the bill is referred to several committees. Once a bill is posted, the process of passing it must be completed in a single legislative session, which only lasts two years.

Let me give you a breakdown of what needs to get done in a two-year legislative session. In January the bills get introduced, but not much is done immediately after that because the first priority in a given year is the state budget. The legislators work on the budget, have budget hearings, and there are public meetings on the budget until it passes. At that point, which is usually sometime in June, the legislators go on summer break, which sometimes can extend into the fall. You are not guaranteed to be seen immediately once summer break is done either because, if it happens to be an election year, the legislators are usually busy working on their campaigns. This cycle repeats yearly. So, in a two year legislative session, there are really only 2 or 3 small windows of opportunity to get anything posted. With Grace's Law, what would happen to us is that we would start in January of the first year of the legislative session, and then we would possibly be stalled for a year. Finally, the bill would get some movement, and the next thing you know it is December of the second year, and the legislative session is over. When a new legislative session begins, no matter where the bill left off in the last session, the process starts over again. Approximately five years ago, Grace's Law passed the full assembly, but the bill was stalled in the senate for a year, and then the legislative session ended. In January of the next year it had to be reintroduced and the process had to start all over again. It was very, very frustrating.

SMAKA: I'm assuming you also appealed with your insurance company to cover Grace's hearing aids, so you were dealing with that frustration as well. What did you find most frustrating - fighting the insurance company or dealing with the legislative process?

GLEBA: The first time we fought the insurance company for her hearing aids it was a very long process, and while we won in the end, it was difficult working on Grace's Law at the same time. Thankfully, the insurance company battle was not one that we had to fight often, since Grace's hearing aids lasted for years. I was unsuccessful in my fight to get her most recent pair of hearing aids covered, though, and we had to put out the full $4000 cost of the hearing aids. That was a thorn in my side;it was very frustrating and annoying but, at the same time, it was very motivating for me to keep working on getting Grace's Law passed. To answer your question, probably the most frustrating thing was the legislative process because, the way their calendar worked, getting a bill posted was so hard and all the way through the legislative process was difficult. There were times I felt like my and Grace's testimony was falling on deaf ears, and it seemed that the bill would not move through.

One of the reasons why Grace's Law so hard to get passed was because it would cost the state money. The state would have had to appropriate money (small change compared to the billions in the budget) because the bill was amended to include the State Employees' Health Benefits, and there was a tier in the New Jersey Family Care program that did not cover hearing aids. Given the financial crisis in New Jersey, it was a battle to get any bill passed that would come at a cost to the state, no matter how small the cost. I think if it had not cost the state money, it would have passed a lot sooner.

SMAKA: Did you ever feel like giving up?

GLEBA: Oh yes. There were many times that I wanted to throw in the towel, but it reached a point where I couldn't quit. What kind of example would quitting set for my three children? I wanted them to see that you can't quit just because things are difficult;that you have to fight the fight for something that's right. Whenever I would write an appeal for hearing aids and Grace's Law, it wasn't only for my daughter, but because the current state of hearing aid coverage was just wrong. It was the principle. How could anyone deny a child the opportunity to listen, hear, and speak? There is so much research supporting the notion that hearing aids should be considered a medical necessity. I had to set an example for my own children.

Motivation also came in the form of the many comments on the petitions and letters I received from other parents that would tug at my heartstrings. I really appreciated the gratitude and encouragement. A couple of years ago, after we were on ABC World News Tonight, we were contacted by parents from other states, and many had a heartbreaking story to tell. One letter was from a woman who had four children who needed hearing aids, but she couldn't afford hearing aids for all of them. This means that she had to pick which of her children could have hearing aids, and who would have to do without. What kind of decision is that for a mother to have to make?

During particularly discouraging times, I would pray for signs that I was doing the right thing, and then suddenly something positive would happen, like the bill might be posted after not being posted for a year and a half, or we'd get great press coverage. That would give me hope. Even thought I knew things could stall again and that the press might die down after a while, things like that kept me going.



Shaking hands with NJ Gov. Jon Corzine after the law is enacted.

SMAKA: One thing I've noticed in press coverage of Grace's Law is how you always graciously thank others who have supported you.

GLEBA: I definitely want to continue to express my gratitude to everyone who has helped us through all the stages of getting Grace's Law passed. However, we also need to remember that Grace's Law is one small victory within a much bigger fight. We need insurance companies to cover hearing aids, not just in New Jersey, but across the country. I am happy to offer advice and help those in other states who are going through the same struggle right now, but it's such a shame that every state individually has to go through all this to get hearing aid coverage. What people also have to remember is that, except maybe for two states, coverage is only extended to children. Hearing loss is a lifelong problem, and these children with hearing loss will continue to need hearing aids into adulthood. They should not be forgotten just because they grow up. Nor should adults be punished because they either can't afford an insurance plan that covers hearing aids, or their employer refuses to pay for it, as plans that include hearing aid coverage are usually more expensive. It should be a standard benefit no matter what the plan. What I really want to get out right now is that it's a national problem, not just a problem for children or the elderly, but a problem for everyone who needs hearing aids and their families.

SMAKA: What advice would you give other parents or people who are struggling to get hearing aid coverage in other states?

GLEBA: Most importantly, if they're going to go the legislation route, they need to get a lot of people and advocacy groups involved. If they can form a coalition of individuals and groups working together, that can make a difference. A lot of states that were successful prior to New Jersey had that. I felt that was our weakest point;we never really had the powerful voice that comes from a strong coalition. As a result, we also didn't have any funding either towards the cause. Any mass mailings or the major event we had in 2008 were funded out of my pocket and from a handful of other mothers. So we were limited in what we could do to raise awareness. So at points in time we were probably also competing against the deep pockets of insurance lobbyists.

It is also important, when introducing a bill, to have a legislator or lawmaker to help push the bill because, ultimately, it is the lawmaker who posts these bills and moves them through the legislature. I don't know what it's like in every state, but we had many roadblocks in New Jersey, particularly political differences within the legislature and the ongoing financial crisis. Where I live, the district's legislators are Republican, but despite some of them having become sponsors of the bill, they couldn't do much to help push the bill through because it was a Democratic bill. However, the fact that it was a Democratic bill was in our favor because New Jersey is primarily Democratic. It is helpful to have a powerful lawmaker in your corner that has a lot of influence and the power to make decisions.

Another tip, especially if you're putting forth a children's bill, is to start out asking for no age restrictions. One reason for this is that there is precedent in other states like Rhode Island for bills with no age restriction to be passed. The other more important reason for no age restriction is because as the bill goes forward and is revised, the terms might get watered down. If it doesn't look like a bill without age restrictions will get passed, it can always be changed to a children's bill. On the other hand you have better odds of movement if it is just a children's bill since that seems to be the trend across the other states that have mandates.

It is also beneficial to have a name and a face to go with the bill. I don't necessarily mean having the law named for a particular person, but to have children there to testify, or just be in the room when testimony is given is very powerful. With Grace's Law, initially it was only Grace and I testifying. As we grew, other families joined us in Trenton, and I think watching Grace helped give some of the other kids confidence to speak. It's very intimidating to go into these rooms, and sit in front of a microphone and speak, but children's testimony and presence can have a huge impact.

Getting press is also very important;on TV, in the newspapers, and on the Internet in order to raise awareness and have a form of contact. Part of my process for Grace's Law was sending out action alerts to the list servs for the various deaf organizations, and I would always tell people to please forward. I had a huge distribution list, and I would also send the information to the principals of the deaf and hard of hearing schools in NJ, and ask them to send it to all the families. They could ask families to write letters, make phone calls, and of course ideally we wanted them to come testify, but we knew very few people would actually come testify.

This leads me to another point. In addition to getting children to testify or be present during testimony, it's important to get people out in large numbers during testimony, just to stand in the room as a presence. As I said, at the very beginning of this process in New Jersey it was just Grace and I testifying. And when other families came, it was literally only a handful of families, but their presence made a difference. I had to take days without pay when I had to go to Trenton and testify, and I understand that people are busy and have other commitments. But, if you're not there and there is no one to support the bill, what message does that send to the lawmakers? They may wonder if there is a point in passing a bill that no one seems to care about. Numbers show the legislators that there are citizens - voters - who have a vested interest in seeing a bill get passed.

SMAKA: After all you've learned in getting Grace's Law passed, do you think insurance coverage for hearing aids will become a reality in other states or on a national level?

GLEBA: I think there will eventually be some kind of insurance benefit across the country for hearing aids, at least for children. This year alone many states in addition to New Jersey, passed legislation for insurance coverage for hearing aids. I'm not sure about my dream where hearing aids are a standard inclusion for all policies, but I would like to think that will eventually happen. I do have hope that this will be addressed on a national level, especially since now federal employees have hearing aid coverage. I'm definitely more optimistic than pessimistic.



NJ Acting Governor Richard J. Codey signs Grace's Law on 12/30/08 in the presence of children who testified on behalf of the law.

SMAKA: Since Grace is now nine years old, and she just got new hearing aids last year, will she be able to benefit from the legislation that she worked so hard to pass?

GLEBA: Well, I think she'll get to benefit once when she needs her next pair of hearing aids.

SMAKA: I think what most inspires me about you is that you managed to do all of this while being a working mother of three - amazing! What is next for you - a book about your experiences?

GLEBA: Actually, a few people have recommended that. I don't know if a book will ever come to fruition, as I would need to find time to write it. If I ever write one and it gets published, I'll be sure to let you know.

SMAKA: Lastly, I want to ask you about Grace who is the same age as my son. What has she been doing since her law passed, and what does she want to be when she grows up?

GLEBA: She's in fourth grade now and like most fourth grade girls, she wants to be an actress/singer when she grows up. Although, she was very inspired by her third grade teacher, so she's also interested in being a third grade teacher.

SMAKA: Where can we direct people for more information about Grace's Law and what you went through to get it passed?

GLEBA: They can visit www.graceslaw.com. The Web site has the history of Grace's Law, links to articles, and there is a link to my blog there as well.

SMAKA: Thank you again for your time, Jeanine, and congratulations on this momentous achievement.

GLEBA: Thank you, Carolyn, I've enjoyed speaking with you.