Naturally, Lisa Adams was worried when she found out her twin infant sons, Nathan and Paul, were born with moderate hearing loss. She became even more concerned when her children’s audiologist, Amal Awdeh, AuD, explained how poor hearing during such a critical time in development could severely impact their budding language skills.
But Adams was quickly comforted when Awdeh explained how far hearing aid technology had come in recent years—with the right equipment, medical and educational teams supporting them—the twins’ speech would most likely develop just fine.
Paul and Nathan were fitted with hearing aids on loan from Boston Children’s Hospital, a practice that allows doctors to find the perfect match of hearing aid to patient before anything permanent is obtained and fitted.
(Click here to support the Caroline Bass Fund at Boston Children’s, which helps fund our loaner hearing aid project. Please write Caroline Bass Fund in the ‘designation’ section.)
After a year Paul and Nathan’s growth was consistent, and doctors were pleased with the progress they were making with the loaner aids, so Adams took her sons to be fitted for their own hearing aids. The visit went well, right up until it was time to process payment.
“We were ready to leave when the woman behind the desk asked for my credit card,” remembers Adams. “I gave her my insurance card assuming she misspoke. Unfortunately, she hadn’t.”
It was then that Adams first learned that most Massachusetts insurance providers didn’t cover hearing aid costs, even for children.
Paul and Nathan’s hearing aids cost $2,500 apiece, suddenly leaving Adams and her husband with a $5,000 bill. And considering the average hearing aid only has a shelf life of three to five years, the couple quickly realized they’d be spending that sum every few years, a tremendous added cost for family with three young children. (Nathan and Paul have an older brother Philip, born just 19 months ahead of them.) She was worried not only about the burden buying hearing aids would have her family, but on every family in Massachusetts that had a child with hearing loss.
“Raising young kids is expensive,” Lisa says. “Having so many extra costs thrust on you in an instant could be overwhelming for anybody.”
But Lisa Adams is not the type of woman to be overwhelmed for long. Rather than accept what she saw as an injustice, the former lawyer began researching states with laws requiring insurance providers to cover hearing aids. She met with lawmakers, medical professionals from Boston Children’s and parents. Armed with reams of information Adams helped draft a bill requiring local insurance providers to cover hearing aids.
Despite all her work, the bill failed to gather enough support to pass the State House committee to which the bill was first assigned for review. Adams realized that if she were to get her bill passed, she’d need more help. She made flyers asking parents if they’d like to join her cause and hung them in the offices of nearby audiologists and speech-language therapists, as well as schools and hospitals.
In a week’s time seven mothers answered the call, and held their first meeting in the back of Panera Bread restaurant in Burlington, Ma. That evening the Massachusetts Hearing Aids for Children Coalition (MassHAFCC) was born.
Each woman brought a unique set of talents to the table, and the effort to raise support for a new bill focusing on children, grew exponentially. The second bill was drafted but again failed to pass. But this time Adams felt empowered by the support of the other MassHAFCC members, making her more determined than ever.
“Working with so many talented and dedicated people kept me going,” Adams says. “Not only were we rallying around this great cause, we were rallying around each other.”
The coalition regrouped, and decided they needed a stronger online presence to gather the full support their bill needed. In addition to near weekly meetings Adams was attending at the State House with fellow coalition members, the MassHAFCC launched a blog, Facebook page and strengthened their connection to parents’ groups online. The response was the extra kick the group needed.
“The ramped up online presence was huge,” Adams says. “At first we were dispersed throughout the state, but when we engaged social media we connected with parents from all over. It quickly led to increased support inside the State House.”
The team at Boston Children’s Audiology Program, which treats the children of all the coalition members, provided invaluable help throughout the process. Aside from emotional support, the team presented data at the State House proving that children with untreated hearing loss cost school districts thousands of dollars a year in support services, and identified the ways untreated hearing loss negatively impacts quality of life for children.
Brian Fligor, ScD, Director of the Diagnostic Audiology Program at Boston Children’s Otolaryngology and Communication Enhancement Department, even simulated the hearing loss, and benefit from using hearing aids, for five of the children of MassHAFCC parents —Paul, Nathan, and three children of Coalition member Michelle Dardeno—which he played for lawmakers to demonstrate how the children’s hearing is affected when they don’t have access to hearing aids.
Use the following links to hear Fligor’s simulation.
|Click here to listen to how someone with typical hearing hears a sentence.|
|Now click here to hear how Paul and Nathan hear the same sentence, without their hearing aids.|
|Click here to listen to how Paul and Nathan hear that same sentence with their hearing aid.|
Thanks to the impactful testimony of coalition members and Fligor’s simulation, the bill passed the Senate in August of 2012, and was ceremoniously signed into law by Massachusetts Governor Deval Patrick on September 27, 2012.
“Dr. Neault, Dr. Kenna and Dr. Fligor were hugely supportive,” Adams says. “Having our providers stand behind us like that meant everything. The data they provided, and legwork they did convincing legislators this bill was important was extremely impactful. We couldn’t have done it without them.”
At the signing, Pamela O’Brien, a young mother whose infant daughter requires the use of hearing aids, thanked the Governor, MassHAFCC and the team from Boston Children’s for their help, the emotion echoing clearly in her voice. O’Brien was laid off while pregnant with her daughter Avery, and learned about her baby’s hearing loss on the same day she received her last paycheck. Under the new law Avery’s hearing aids will be covered by insurance starting this January, just weeks before the contract on her loaner aid is set to expire.
“When we found out that Avery had a hearing loss and how much the hearing aids would cost, we were completely overwhelmed,” O’Brien said as she fought back tears of gratitude. “I knew it was going to be a lot of hard work to get her the heading aids, but I can’t thank you enough because you did the work for us.”
In response Adams says she and the other coalition members are just glad that that going forward families will no longer have to face the fear and financial uncertainty they did.
“Seeing the Governor sign the bill was thrilling,” she says. “But knowing that people in Massachusetts no longer have to do without just so their children can hear is what really makes all the work worth it.”
To speak with a member of our Otolaryngology and Communication Enhancement team, please call: 617-355-6460