18th ANNUAL EARLY HEARING DETECTION & INTERVENTION MEETING
March 3-5, 2019 • Chicago, IL
Award Winners 2017
Congratulations to Lisa Adams and Janel Frost, winners of the inaugural 2017 EHDI Family Leadership Award!
On behalf of my colleagues at Boston Children's Hospital and the families of children who are deaf or hard of hearing in Massachusetts, I nominate Lisa Adams for the EHDI Family Leadership Award. In my 35 years of working in pediatric audiology in Massachusetts, I have been privileged to become acquainted with the efforts of many extraordinary parents of children with hearing loss who help other families both individually and through organizations. Lisa Adams truly stands out in every dimension. She not only spearheaded a major legislative accomplishment but also engages other parents and charges their batteries so that they can participate and grow new skills in ways they never thought they would be capable. In all her activities, she remains humble, empathetic, and positive, always ready to receive and give useful information and to share credit for accomplishments.
Lisa Adams is an attorney who has practiced labor and employment law and works as an attorney/writer for the Massachusetts Commission Against Discrimination. She and her husband are the parents of three boys, two of them being twins who are hard of hearing and who are in the seventh grade. From the time she realized that her infant twins' hearing aid dispensing practice was asking for her credit card rather than her insurance card when they asked for her "card", Lisa began advocating for health insurance coverage for children in. In 2009 she co-founded the Massachusetts Hearing Aids for Children Coalition (Mass HAFCC). She formed an effective relationship with the staff of the primary legislative sponsor of the bill, engage other parents to be relentless in their efforts, and succeeded. On August 6, 2012, I had the great privilege of being present when Governor Patrick signed Chapter 233 of the Acts of 2012 into law, mandating hearing aid coverage by health insurance. The roomful of cheering patients, including the mother of a tiny babe in her arms only weeks old and tearful with relief that the baby's hearing aids would be covered, eased years of pain for me from giving difficult news twice in short succession: that their child need hearing aids, and that they cost far more than many young families with stretched credit cards could afford.
Lisa did not rest after the bill was signed into law. She learned the eccentricities of deductibles, co-pays, ERISA plans, bundled fees, etc. and turned them into understandable language on the Mass HAFCC site. She was elected to the Board of Directors for the Mass. AG Bell Association to run the Bell's Kids program. I see her at nearly every activity that I attend for the support of individuals with hearing loss, actively helping, networking, and sharing her remarkable positive energy.
I was delighted to learn recently that Lisa Adams has been appointed to one of the two coveted "public" seats on the 18-member Advisory council to the National Institute on Deafness and Other Communication Disorders (NIDCD). She has a four-year appointment and will attend her first meeting next week. I can think of no better person for this role, because of the way she uses her unique combination of legal skills, persistence, and understanding of the needs of children and families. I have no doubt that she will educate herself about research grant procedures beyond baseline before she even begins this new role, and she will bring the family perspective to the NIDCD table.
The Michigan Hands & Voices Board of Trustees nominates Janel Frost for the 2017 EHDI Family Leadership A ward, for her tireless efforts within the Michigan EHDI system to: 1) create a state chapter of Hands & Voices, and 2) for her advocacy to improve educational planning for Michigan children who are deaf or hard of hearing.
Janel's son, Mason, was born prematurely in 2001 and spent his first four months in the hospital. He had nine surgeries as an infant, and was identified as hard of hearing. As Mason grew, Janel became involved in parent support activities in Michigan. But in 2012, there was only the Guide By Your Side™ program within EHDI, running without a state chapter of its parent organization, Hands & Voices™. There were no parent leaders interested in establishing a state chapter. Recognizing the need, Janel stepped up. As a Parent Guide in the Guide By Your Side program, Janel had seen firsthand that not all families received the opportunities that had been provided to her. This fueled her drive to start and grow the Michigan chapter of Hands & Voices. Janel began to inspire others to get involved. She worked closely with the EHDI program to find small pockets of money to host events. She recruited parents and individuals who are deaf and hard of hearing. A board started to form. Janel became the Director. Under her leadership, bylaws were written, corporate papers were filed, 501c(3) status was achieved, budgets were prepared, and grant funding was obtained.
Because of her tireless efforts, Michigan Hands & Voices now has 130 paying members, and 700 Facebook members. The number of events and trainings has risen from one to 10-15 per year. The chapter now directly assists approximately 150 families per year. Not content to just direct the chapter, Janel pushed to add another program. Moved by watching families struggle to find support when working with schools, Janel led a group to obtain funding, and started the Michigan Hands & Voices ASTra™ Advocacy Support & TRAining program. As ASTra Coordinator, Janel oversees eight lay-advocates. ASTra is on track to help about 25 families in the program's first year. Janel is also working closely with the Department of Education to improve the educational process statewide.
Janel Frost worked without pay the first three years of developing the chapter, and she donated materials - or acquired donations - to get things done. She worked mostly before breakfast and at nap times because she was also simultaneously managing her in-home childcare business.
Now Janel has taken a pay cut to be available to Michigan Hands & Voices almost full time. Janel's magic not only lies within the hard work and long hours she puts in, but more so in her talent to engage and energize a group of volunteers toward a shared goal. Janel has created a strong foundation that future parent leaders will be able to build upon. Ultimately, Michigan families benefit the most from Janel's commitment, now and in the future.