Over the last few years, I have wondered if each of us with a deaf or hard of hearing child is somehow uniquely qualified to be their parent. As a Parent Guide and Follow-Through Guide with Texas H & V, I admire so many of you. I find myself humbled by the observation that many of the tools and resources we need to raise our children are in place. I remember a mom whose sister was a Deaf Ed teacher, or the parent who was a speech therapist, or the mom whose job required her to work closely with early intervention. Everything we need is here, sometimes waiting to be discovered, both around us and in us. We often don’t see it, especially when we first receive the news that our child is deaf or hard of hearing.
Learning that our first-born son had a hearing loss three years ago was the most heart-wrenching moment of my life. Worrying about all that he might miss and fearing he may feel isolated was excruciating. We felt some relief knowing that hearing aids were available to make the world more accessible for him. Despite having “good” insurance coverage we learned that this equipment was not covered by our plan. Feeling angry and devastated, we appealed three times and provided mounds of research to support the letter of medical necessity for hearing aids. We were denied repeatedly. Much to our shock we learned insurance companies in Texas are not required to cover these for children. (See map of states with legislation.) I remember reading stories of passionate parents who started grass-roots efforts to change the legislation in their states. I said to myself, “Someday (maybe) I will feel ready to tackle this in Texas.”
At the spring 2015 National EHDI meeting, I participated in the Texas Stakeholder’s Meeting where we talked about statewide goals and efforts around early identification and intervention. The discussion turned to current legislation that impacted these efforts and a desire to create connections with legislators who would champion these bills. A deaf adult suggested a Representative that had worked on these issues in the past. The person suggested was my neighbor. With an unsteady voice and fear for what I was volunteering to do, I offered to reach out to him. Could I speak on behalf of our community and our children? Other than voting every four years, I had never been actively or even passively involved in legislative efforts. I felt uniquely unqualified to play this role. Much like the feeling I had when the Audiologist confirmed that our son was hard of hearing, I was overwhelmed and intimidated. I did what I do in these situations; I took that first step into the unknown because my son was counting on me.
Karen Ditty, VP of Governmental Issues for the Texas Academy of Audiologists (TAA) and a Texas H & V board member, trailblazed previous legislative efforts to mandate insurance coverage for children’s hearing aids. We were both in that meeting and together with Kellie Berger, the Chapter President for Texas H & V, we got to work. In reflecting on the past session’s efforts, the team realized it was critical to have parents and kids take a leading role. We needed to bring the voices and stories of those that were directly affected by the lack of access to hearing aids. TAA was already working with a lobbyist and had found a Representative to author the bill. Step one, check and only an infinite number more to clear in the remaining two months of the session.
I was unfamiliar with the process or the hurdles ahead, so I asked lots of questions. After making contact with my neighbor, I talked with his staff about what we could do. 1) Call our district Representatives and ask for their support. 2) Petition the members of the Insurance Committee and ask for a public hearing 3) Repeat this process through each stage and committee until it reached the House for a vote. 4) Simultaneously find support in the Senate. At times, we heard vastly different messages from legislative staff: some aides educated and others discouraged. We knew at any step our bill could be “killed” and we would have to wait two more years to try again.
Berger started an online petition to show support for House Bill (HB) 2979. We watched with exhilaration as signatures grew, first to 100 and eventually over 3000. Social media drove the numbers up as we emailed parents, friends, family members, and professionals to share the petition with everyone they knew. We posted updates on Facebook and started a private page to facilitate sharing of information and lists of contact numbers for all the Representatives. We wanted to make it as easy as possible for people to show their support. And show their support they did!
A small group of parents emerged as the grassroots steam engine we needed to move this bill forward. Each person brought something unique and crucial to this effort. One parent set up a website to make it easier to coordinate next steps and requests for action. We needed repeated calls and emails to Representatives, first at the local level and then to those on the committees that would review the bill. We asked supporters to show up on the day of the hearing to give testimony and cast a card in support of the bill. Despite having almost no notice of exactly when that hearing would happen or how to find it in a labyrinth of hallways, we had parents at-the-ready to make the trip to the Capitol.
On the day of the hearing, a small group of parents, their deaf/hard of hearing kids, professionals and advocates waited nearly the entire day for their moment to speak. One of these parents, employed by a major insurance provider, shared much-needed statistics and insights on the cost of adding aids to consumers’ benefits. A soft-spoken hard of hearing teen came with her mom and delivered a moving testimony that prompted an offer by another legislator to co-author the bill. A father who drove in from Houston offered powerful observations and exhorted the committee to take action. His wife managed to get an unbelievable amount of press in just a few days by sharing their family’s story. Our “little Bill that could” made it out of the first committee unanimously.
We learned that most bills start moving through these steps far earlier than ours, and that even well-supported bills take at least two to three sessions to pass. We now had less than a week to pass through the Calendars Committee, to be voted on by the House and to move to the Senate. Parents stayed hopeful and determined amidst many discouraging messages about how unlikely it was that our bill was going to be heard.
HB 2979 was placed on the calendar towards the very end of the list. We celebrated that victory with more calls to gain support. There was only two days for all the bills on that calendar to be heard. We knew it was a long shot, but our motto was “go big or go home.” This was personal. We were passionate, tenacious and increasingly united in the idea that we needed to be advocates for our children. At home, we practice these skills by working with our kids’ schools, medical professionals, language facilitators, and even our own families. We usually don’t realize all that we have gained until we are put to the test.
The feeling of the clock ticking was a familiar one. I often worry that I have a limited amount of time to make the right decision or take the right actions concerning my child. Much of the time, I have no idea what the trail ahead looks like. Watching our bill move through the session, conquering one challenge and then immediately meeting another, felt so much like parenting.
Several controversial bills on the calendar required extensive debate leaving little to no time for the rest of the bills, including HB 2979. Feeling the palpable disappointment of the parents with us and online, I thought of a last ditch effort to make this happen. I called on a childhood friend who works as a policy advisor to the Governor to see if there were any stones left unturned. He looked for possible bills to attach ours to in the final hours of the session. He was empathetic but unable to stop the clock. In the end, HB 2979 was not heard before the House because time simply ran out.
Being the parent of a d/hh child pushes us to develop advocacy muscles until a child can find their own. At our best, we learn to be patient but tenacious, flexible and ready to change course. These principles apply to everything from learning language to getting what our children need from an IEP. The skills that are refined in us as we walk this path are the same ones we need to change legislation. In Texas, our experience helped us uncover gifts, relationships, information and a common goal to serve our children. Working together on this legislation stretched each of us in different ways. We will take what we have learned, make adjustments and create a momentum to see this through in the next session.
When faced with a challenge as parents or advocates we often feel overwhelmed with the “what if’s” and the “why us” questions. Although it’s sometimes difficult to see, I think we find the gifts and experiences we need when we open our eyes to them. I am grateful for all the families I meet and often find myself thinking, “You have so got this! Look at all that you already have in place!” Meeting parents that are further down the road and have found their way gives us hope. When we put one foot in front of the other each day, we come to see the ways in which our children are teaching us and guiding us. Who knew that the lessons we have learned as parents would prepare and inspire us to affect legislation?
http://www.infanthearing.org/legislation/hearingaid.html#children Details on how to contact your legislators, talking points, sample letters, advocacy points, and status of hearing aid mandates by state
http://www.asha.org/advocacy/state/childcoverage/ Model bill created by the American Speech-Language-Hearing Association
http://www.houstonchronicle.com/local/gray-matters/article/Fighting-for-kids-hearing-aids-in-the-Texas-6261757.php Newspaper story on Texas legislation
http://www.chron.com/opinion/outlook/article/Wittels-Texas-Legislature-puts-process-politics-6295733.php Opinion piece by parent Stephanie Wittels Wachs
http://www.houstonchronicle.com/local/gray-matters/article/Children-s-hearing-aids-aren-t-cosmetic-6246667.php Article on the Wachs’ family story and Michael Wach’s testimony
http://www.letamericahear.org: Website with resources for advocates interested in hearing aid and cochlear implant coverage legislation.
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