Going Big on Health Care With the Little Lobbyists

Letters From the Trenches are letters written by activists for activists, highlighting some of the work that’s making a difference in our world. Our latest installment is written by ElenaHung, mother and co-founder of Little Lobbyists


On June 11, after kissing my kids goodnight, I went to my friend Erin’s house and we sat around her kitchen table with our friend Michelle, eating leftover birthday cake. We spent the next few hours laying out our plan to save the Affordable Care Act.

I had no idea then that just a few weeks later I’d be meeting and lobbying Senators face-to-face, speaking at a Senate press conference, and rallying an energetic crowd on the Capitol steps.

During the weeks that followed, my friends and I often said to one another: go big, or go home.

We went big.

This is my story.

I am a mom.  Three years ago, I had a great pregnancy and an amazing birth. I was thrilled to meet my baby girl, and then 15 minutes after she was born, she was given 100% oxygen support and rushed to the NICU, where she remained for the next five months. During that time, she was diagnosed with conditions affecting her airway, lungs, heart, and kidneys, resulting in three major surgeries, countless medical procedures, and consultations with over a dozen specialists. I was quickly thrust into the world of “complex medical needs” and took a crash course on how to advocate for my baby. I have been advocating for her ever since.

Plans to repeal the ACA and cut Medicaid directly impact my family and families like mine. We have been following the health care discussion all year; we have called and emailed our legislators; we attended health care rallies and forums. Once my friends and I heard the Senate GOP’s plan to fast track its health care legislation in June – a bill discussed and drafted in secret behind closed doors – we knew that we had to do more. We don’t have policy expertise or lobbying experience, but we do have a primal instinct to protect and fight for our kids.

So, around that kitchen table that late night, we hashed out the blueprint for what we were going to do. We wanted to take advantage of the fact that we were just a Metro train ride away from Capitol Hill. And we were convinced that if lawmakers saw our kids – if they just met them and saw that they were children who were thriving because of proper medical care – we could start a real conversation about what health care means.

As Maryland residents, both of our Senators are Democrats and staunch supporters of the ACA. For us, calling them wouldn’t change the minds that needed to be changed. But we had heard from other families like ours across the country that their GOP Senators were incredibly difficult to reach. The office phones would ring and ring and they couldn’t get through. They would leave messages and nobody would return their calls. They would email and wait for a reply that never came. A majority of the Senators were not hosting town hall meetings either. These families were desperate to communicate with their Senators and were doing everything they could, but despite great efforts, they were not getting through.

So we thought – maybe we could help them get their message across. Maybe we could show up at their Senators’ offices in person and hand-deliver their stories with photographs of their children, and explain how repealing the ACA and cutting Medicaid would devastate these families, their constituents. Maybe we could change hearts and minds by telling our stories. We decided to have one “lobby day” when we’d go office to office, with our kids and all their medical equipment in tow, to help put a face to the health care discussion.

News reports at that time suggested the Senate would be voting at the end of June, so we settled on June 20 and gave ourselves one week to get organized for our lobby day on the Hill. Michelle and I immediately got to work; we put out a call for health care stories on Facebook in our various family support groups. The stories didn’t come right away, but we didn’t let that stop us. We reached out to people individually and explained what we were trying to do, and kept asking and asking. Ultimately we got almost 100 stories for our first lobby day, which we put in a big binder and carried with us. We made extra copies of the stories to hand-deliver.

We also reached out to Family Voices, who helped us have meaningful policy discussions and advised us on the logistics of navigating the Senate Office Buildings. We were fired up for our lobby day and decided to go big and call the media. The Washington Post and Vox answered, and accompanied us on some of our office visits.

On that first lobby day, June 20, we met with our own Senator Van Hollen, who reiterated his support for the ACA and his commitment to protect our families. We also met with Leader Schumer, who spent time interacting with our children and listening to our concerns. His staff was also incredibly supportive. And we were thrilled to run into Senator Warren in between appointments, who encouraged us to keep speaking up and telling our stories.

Needless to say, it was an amazing experience to meet with and talk to some great leaders in the Democratic party who supported our families. But as the day wore on, we were running out of time to deliver all the stories we had, and we were getting frustrated that we weren’t able to meet with more GOP Senators and staffers. Michelle and I quickly decided we had to come back the next day. So we did. And that led to another day after that. And another, and another. As we went on, more families joined us. We realized we were just getting started. We said “let’s go big.”

All told, between June 20 and July 28, 16 families came to the Hill on behalf of our group – which we had named “Little Lobbyists.” We brought our kids with us every time. From that first lobby day to the day the “skinny repeal” bill was defeated, we had collected 225 stories from families in 46 states, and we spent 14 days on the Hill, visited all 100 Senate offices, had meetings with staffers from 33 Senate offices (Republicans and Democrats), and met 20 U.S. Senators. Considering we had initially planned for just one lobby day, that was pretty big.

And other “big” things happened, too. In mid-July, the Senate Democrats hosted a press conference and asked Michelle and I to tell our stories to a room packed with reporters and cameras. Another late afternoon, I found myself on the Capitol steps in front of an energetic crowd; Senator Booker handed me the bullhorn so I could share my daughter’s story while Senators Warren, Schatz, Murphy, and Blumenthal stood next to me. Our advocacy was featured in The Washington Post, TIME Magazine, The Rachel Maddow Show, and countless other media outlets. Michelle and I were also interviewed on The Bill Press Show in a segment dubbed “Health Care Heroes.”

Before the Little Lobbyists, I didn’t really consider myself an activist. I read the news, I attended the occasional rally, and I donated money to causes that were important to me, but I never did anything big like this. I have been asked by Small Deeds Done to share some advice for fellow activists like you. While I am still pretty new to this, and I have a lot more to learn, here is what I know so far:

GO BIG. Every chance you get, go big. Dream big and plan big. Take every idea you have that starts with “can we do this?” and turn it into “let’s do this!” We asked families to share their children’s medical details and concerns with us, and they did. We asked U.S. Senators to speak with us about health care, and they did. We asked the media to highlight parents visiting Senate offices with their kids to fight for health care, and they did. Go for it.

Find your voice. What is your story, and how will you tell it? I struggle with the exact words at times. I am not a health care policy wonk, and I cannot recite all the data and numbers from memory, but I do know my story. I am the expert on my daughter and her medical needs. I am an expert on the life of a medically complex child and what access to affordable, quality health care means. That is my story. I also know I communicate better on paper than on video. I prefer emailing and texting to calling. I choose rallies over protests. Sometimes my comfort zone is in person one-on-one, sometimes it’s online to whoever is following. That’s what works for me. And sometimes that changes, and sometimes I have to push myself out of my comfort zone. Find what works for you. Know your story. Then tell it, and keep telling it.

Take care of yourself. I am not going to lie; advocacy is hard work. Our Little Lobbyists families all have full-time jobs or take care of our kids all day. Many of us stay up late into the night almost every night to work on advocating for our kids. We sacrifice family time and take personal leave from work to be on Capitol Hill. None of our families are paid for volunteering our time and talents. Remember to refuel so that you have the strength to keep fighting. Get some sleep, eat a good meal, spend time with loved ones, and enjoy some fresh air.

Remember your manners. Conversations worth engaging come from a place of respect. Be civil and be kind. Find common ground with those who disagree or are unaware and build on that. If you find hurtful words from strangers who do not want to get to know you or your cause, scroll on. Ignore the trolls. Save your time and energy for your advocacy.

Network! There are a lot of amazing people who are fighting the same fight as you. A lot! Get to know them. Exchange phone numbers. Get connected on social media. Schedule a coffee date. Share tips and resources. Collaborate on a project. I am beyond thrilled and humbled to be in the same company as my new friends: an army of warrior parents (especially Natalie Weaver who inspired me to share my story publicly); brave patient advocates who are speaking up; members of ADAPT and other disability rights organizations who have been fighting this fight long before me; advocacy groups like MoveOn.org who lead us in this fight; the media and all the talented photojournalists who help put a face on health care; the policy experts who guide us through the numbers and data; and the Senators and their staffers who fight for us from within the Capitol. There are too many to name here, but I love every single one of my new friends!

Connect with your community (AKA Network, Part 2). Know that your work can also lead to amazing connections in other ways. Recently the mother of a 3-month old girl reached out to me. Her daughter was just diagnosed with tracheobronchomalacia, the same condition that my daughter has; and like my daughter was at that age, she was in the NICU awaiting a life-saving and scary surgery. That mom Googled her daughter’s condition and found a video of me sharing my story. As she and I corresponded about her experience, I was transported back in time. I know what it’s like to sit in that NICU room and drown in fear and loneliness, and I remember wishing then that I had someone to talk to. I was able to be that someone for this mom, and that, to me, was just magical. Remember who you are fighting for.

Be prepared. Be on the lookout at all times for ways you can fight for your cause. Say yes to everything. Show up. Take advantage of every opportunity that comes your way. Rehearse your elevator speech. On July 27, a group of Little Lobbyists families and I attended a late night impromptu MoveOn.org health care rally right outside the Capitol. We were cheering on and listening to all the speakers, which included senators and longtime activists. An hour and a half in, I get a text message from Ben Wikler, the Washington director of MoveOn who was also emceeing that very rally (he multitasks very well!), and he asked if I would speak. I did not expect that at all; I had just spent ten long hours lobbying on the Hill that day and I was tired, but I said yes. Two minutes later, Ben handed me the mic, and I stood before a fired up crowd of health care advocates and talked about the power of sharing our stories. Be ready when you get the mic.

Don’t give up! There will be hard days. There will be painful losses. There will be moments of despair. Power through. Persist. Families like mine think back to when our kids were in the NICU and in and out of hospitals. There were lots of hard days there – really, really impossibly hard days. But we carried on because we couldn’t give up on our babies. We didn’t have a choice, and we had to keep going. In a way, we have learned persistence in a more intimate manner than most people, and we carry it in everything we do. Take a breath, and then get back up. You got this.

In these three months, I have heard from countless other parents with children who have complex medical needs. They have reached out to me to talk about hospital stays, surgeries, therapies, medical care, and this unique life of ours. They have reached out to say that the Little Lobbyists empowered them to contact their elected officials. They say that Little Lobbyists inspired them to share their stories publicly. I love that we are encouraging others to not only be part of a community of families, but to also be part of a community of activists. You can be part of that community of activists, too.

Share your story. Share it with friends, family, neighbors, co-workers, classmates, … everyone. Contact your Senators, your Representative, and your Governor and share your story with them, too. Remember, they work for you and need to hear from you. Reach out to the media, especially local media. Write an op-ed. Speak up. And don’t stop.

We still have a lot of work to do on health care and advocating for our kids. Looking back, it’s amazing to think of how much we accomplished in such a short amount of time. And right now, we are planning to go even bigger.

Please join us.

With love, in solidarity,

Your fellow activist,

~Elena

Elena is the co-founder of Little Lobbyists, a group of families advocating for children with complex medical needs. For more information, please visit www.littlelobbyists.org, join the Facebook group Little Lobbyists, and follow on Twitter @LittleLobbyists. Elena can be reached at elena@littlelobbyists.org

 

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