Nine-year-old Grace and her mom, Jeanine Gleba, are true trailblazers. They have fought for - and achieved - a landmark New Jersey legislation, aptly named “Grace’s Law,” which mandates all health insurers in the state to provide up to $1,000 coverage for each hearing aid prescribed for children 15 and under, with the exception of self-funded ones which are protected federally under Employee Retirement Income Security Act (ERISA) and do not have to follow state mandates.
That is a big accomplishment, especially considering that passing any law is a difficult and time-consuming process that requires patience, determination and a large dose of perseverance (read below). Thankfully Jeanine had all three.
Kids with hearing loss falling through the cracks
Here’s a truly sad statistic: an estimated 1.4 million youths in this country have hearing loss, but only 12 percent wear hearing devices, according to a national study released by the Better Hearing Institute.
While all newborns in the U.S. are routinely screened for hearing loss, most private insurers don’t cover hearing aids. According to the Hearing Industry Association (HIA), as of June 2009 there are 14 states (including, thanks to Jeanine, New Jersey) that require some level of mandatory health insurance coverage for children’s hearing aids and in January 2010 that number will rise to 16 when laws are enacted in two additional states. But what do you do if you live in the other 34 states?
According to American Speech-Language-Hearing Association, between one and six per 1,000 newborns in the U.S have congenital and – if left untreated, potentially debilitating -hearing loss. The routine screening is undertaken because early identification and treatment of a child’s hearing impairment is crucial in preventing a wide range of future learning, emotional and social problems.
In fact, research has shown that children who don’t receive early intervention for hearing loss will cost, over their lifetime, nearly $1 million in special education, lost wages and health complications; the cost to schools alone is an estimated $420,000.
Yet, even in the face of this compelling evidence, neither health insurers nor most states provide adequate coverage for hearing aids. True, there are some private organizations, such as Quota International and Siemens Hearing Instruments Inc. that partner in Sound Beginnings to help financially-strapped families obtain hearing aids for their children. However, a vast majority of parents must pay for the hearing aids (average cost: $1,000 to $4,000) themselves, which is a big strain on many families, especially in these economically trying times. As Jeanine Gleba says in an interview on AudiologyOnline, “It’s wonderful that hearing impaired 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?
|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|
A long battle starts
When newborn Grace was screened for hearing loss, a severe sensorineural loss in each ear was discovered. The girl has worn hearing aids since she was three 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,” Jeanine relates. “Since it’s not required, many don’t, or they limit hearing aid coverage to their most expensive plans. One of the arguments in our testimonies and letters to legislators was that cochlear implants are covered, but why not cover hearing aids as well?”
Jeanine says fighting the insurance company was energy draining and time consuming but “thankfully, this 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. 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.”
How a bill becomes a law – maybe
Getting a legislation passed, Jeanine says, 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.”
But the slow process wasn’t the only source of frustration for Jeanine. “The way their calendar worked, getting a bill posted was hard. 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.”
Another civic lesson for the family was the behind-the-scenes compromises involved in getting the law off the ground and on the books.
“Over the years, the terms of Grace’s Law were watered down,” Jeanine says. “There are still hearing aid bills languishing in New Jersey, even one 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. 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.”
Quitting was not an option
Jeanine admits that there were many times throughout the long-drawn and often frustrating process when she wanted to throw in the towel. “But it reached a point where I couldn’t quit,” she recalls. “What kind of example would I be setting for my three children?”
During particularly discouraging times, Jeanine recalls, she 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 and keep me going.
” What also helped her stay the course, she says, was seeing the bigger picture – the injustice of the current system and her chance to bring in a positive and meaningful change. “Whenever I would write an appeal for hearing aids and Grace’s Law, it wasn’t only for my daughter,” she says. “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.”
Outpouring of support also helped keep Jeanine on the right track, she says. “Motivation came in the form of the many comments on the petitions and letters I received from other parents. I really appreciated the gratitude and encouragement. 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 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?”
|Grace shaking hands with NJ Gov. Jon Corzine after the law is enacted|
Like many hearing health advocates, Jeanine believes hearing aids funding should be handled on federal rather than state level. She says she supports 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) and, 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,” she points out. “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.”
Jeanine’s grassroots efforts in her own state, however, have paid off (the bill was signed in December 2008) and now Grace and other New Jersey children can benefit from her action. Parents too can draw inspiration from her experience. For example, when fighting what she calls “deep pockets of insurance lobbyists,” it is important to:
- Get a lot of people and advocacy groups involved. Forming a coalition of individuals and groups working together can make all the difference.
- When introducing a bill, have a legislator or lawmaker help push the bill and move it through the legislature. “It is helpful to have a powerful lawmaker in your corner who has a lot of influence and the power to make decisions,” Jeanine says.
- Start out asking for no age restrictions 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,” Jeanine suggests. “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 and can have a huge impact.” 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 visible presence.
- Get media’s attention in order to raise awareness. Also, send out action alerts to deaf organizations and activists in your state; ask them to write letters, make phone calls, and, ideally, testify.