Posts in On Capitol Hill
You're The One You've Been Waiting For, by Laura Hatcher
 Finding my voice with the Little Lobbyists.

Finding my voice with the Little Lobbyists.

I know a lot of people say they don’t like to “talk politics.” I was once one of them. I was informed, I cared, and I voted, but talking about politics just seemed too icky.

So I surprised myself a little when I decided to begin visibly and vocally engaging in politics. Aside from a term on middle school student council (one year as president, thankyouverymuch), it wasn’t something I saw in my future. I’m a graphic designer who loves helping people communicate but doesn’t particularly like conflict. I design, teach, and try to help create a more beautiful world, work which has always fulfilled me.  

Until, suddenly, it didn’t seem like enough. A little over a year ago, the political powers-that-be began to overtly threaten my disabled son Simon’s health care, education, and civil rights. Our country had changed in a scary way. I lost the privilege of sitting on the sidelines believing everything would be “okay.” A privilege I’m sorry to say I’d taken for granted the previous 8 years.

I do have some prior experience diving headfirst into dark water, ever since a doctor told me there was something “very wrong” with my baby's brain. Any parent of a medically complex child could tell you some variation of the same story: their baby was sick and the pediatrician couldn’t help, so they sought out specialist after expert specialist. Farther and deeper they searched until they found someone with answers. Perhaps, like me, they even found themselves plunging into previously unfathomable depths (shout out to NIH Undiagnosed Diseases Network!). But ultimately, on this voyage we each discover that there’s no one better than ourselves to navigate these unchartered waters with our children.

One day you realize the expert you’ve been waiting for is you.

You read the wonky medical journals and memorize the vocabulary. You even train the residents about your child's conditions (OMG so YOUNG!). You learn how to separate fact from BS and you refine your advocacy – polite but very firm – until you have just enough fire glinting in your eyes for folks to know not to cross you. You will get what your child needs whatever it takes.

It turns out those skills are exactly what you need to be an effective political activist.

Instead of medical journals, you read equally wonky policy articles and memorize some new vocabulary (bad news: still lots of acronyms, good news: less Latin!). You train staffers (OMG why are they all so young?), separate fact from BS, and advocate with the same firm, fiery, politeness. You will get what your child needs whatever it takes.

It also turns out that both physicians and politicians are just people you need to communicate with.

Sometimes the communication is icky. Some people can’t, or won’t, help you. Some will lie to you. Others will tell you like it is, but admit they don’t actually care much.

But, sometimes, it isn’t.

Sometimes, people will listen, tell you like it is, care, and help you. You’ll see the fire in your eyes reflected in their own. You’ll learn they’ve been fighting for you all along and it’s stories like yours that inspire them.

Our stories are powerful. These are our truths which we hold to be self-evident. The love of a parent for a child; of an American for justice, freedom, and equality. It’s not a perfect union, but a work in progress we must all participate in.

Sometimes, people cry with you. The first Senator I visited, Debbie Stabenow from Michigan, had tears in her eyes as she took my hand to tell me she was so happy to meet us, but so sorry we were there because our government is threatening our vulnerable children.

 Meeting Senator Stabenow (Simon requested snacks... fortunately she had lots of Kellogg's cereal on hand! Did you know Kellogg was based in Michigan?)

Meeting Senator Stabenow (Simon requested snacks... fortunately she had lots of Kellogg's cereal on hand! Did you know Kellogg was based in Michigan?)

Sometimes, people race to be at your side, the way Senator Wyden ran to meet us the cold, rainy night of the “People’s Filibuster” of the GOP Tax Bill.

 Senator Wyden talking about the impression our kids with complex medical needs made on him at the night time People's Fillibuster. He was very kind and very, very tall.

Senator Wyden talking about the impression our kids with complex medical needs made on him at the night time People's Fillibuster. He was very kind and very, very tall.

Sometimes, people give you hope. I’ll never forget shaking Senator McCain’s hand and thanking him for his vote against the repeal of our health care. His face was bruised from battling cancer but his gaze was strong and steady as he told us he cared about us. He said he prays for our families every day, and we pray for him and his.

 My husband Brian shaking hands with Senator McCain. This is Brian's "wow" face. Because, wow. Also, it was Halloween and we went trick-or-treating in the Senate (as one does) and that is a giant seahorse costume we made for Simon's wheelchair. He was Aquaman. I don't always wear a Wonder Woman crown, just as needed. I'm thinking about keeping it in my handbag...

My husband Brian shaking hands with Senator McCain. This is Brian's "wow" face. Because, wow. Also, it was Halloween and we went trick-or-treating in the Senate (as one does) and that is a giant seahorse costume we made for Simon's wheelchair. He was Aquaman. I don't always wear a Wonder Woman crown, just as needed. I'm thinking about keeping it in my handbag...

Sometimes, people embrace you. Senators Schumer, Casey, Booker, Warren, Duckworth, Harris, Bennet, Cortez Masto, Hirono, Murray, Reed, Kaine, Murphy, Hassan (whose own son has cerebral palsy just like mine), Warner, Van Hollen, Cardin, Schatz, Baldwin, Gillibrand...have literally embraced our kids. (If you noticed a blue tint… well, friends, unfortunately that’s just how it is right now. Though not from lack of effort on our part, I promise. Yes, we will keep trying.) These legislators fight for our “Little Lobbyists” because as constituents they are their children, too.

 Senators Warren and Duckworth meeting some of the Little Lobbyists. So much love and so much cuteness right there.

Senators Warren and Duckworth meeting some of the Little Lobbyists. So much love and so much cuteness right there.

 Senator Murray invited us to visit for the holidays. I loved learning that she started her political career as a "mom in tennis shoes" advocating for education as a preschool teacher. The kids loved the candy canes. (If you look closely by my feet -- I'm the gal in the Santa hat -- you'll see Simon lying on the floor. He had a small seizure while taking this photo. One second after saying "cheese" his service dog Tigger brought me his meds and we treated him right there, on the floor of a Senate office. We Little Lobbyists keep it real!)

Senator Murray invited us to visit for the holidays. I loved learning that she started her political career as a "mom in tennis shoes" advocating for education as a preschool teacher. The kids loved the candy canes. (If you look closely by my feet -- I'm the gal in the Santa hat -- you'll see Simon lying on the floor. He had a small seizure while taking this photo. One second after saying "cheese" his service dog Tigger brought me his meds and we treated him right there, on the floor of a Senate office. We Little Lobbyists keep it real!)

Sometimes, people empower you. Leader Pelosi has invited me and many other parents to tell our stories at her press conferences. She carried our children’s names with her into the House of Representatives. My family’s story is now part of the permanent Congressional record. She even warned her colleagues not to “trip on Simon’s wheelchair” as they try to get between a special needs mother and the care her child requires. That’s on the record, too.

 Just a mom giving a speech in the Capitol at Leader Pelosi's press conference. You can watch  my speech here .

Just a mom giving a speech in the Capitol at Leader Pelosi's press conference. You can watch my speech here.

Leader Pelosi needed no explanation, premise, or pitch when it came to protecting our kids. She’s championed our children with complex medical needs and disabilities in every way she can. She’s a mother and a grandmother. To me, she demonstrates the impact of women in office -- they understand and vote for what our families need. Leader Pelosi knows our children and they know her, not as a political powerhouse, just as one more badass mama who loves them and protects them.

 Leader Pelosi thanking my daughter Olivia for being a great big sister and standing up for what she believes in. Yes I am crying, you would too.

Leader Pelosi thanking my daughter Olivia for being a great big sister and standing up for what she believes in. Yes I am crying, you would too.

 Leader Pelosi getting a hug from Little Lobbyist Charlie. No, our kids could not be any cuter.

Leader Pelosi getting a hug from Little Lobbyist Charlie. No, our kids could not be any cuter.

So, to all my fellow badass mamas (and papas) of kids with complex medical needs and disabilities who are already fighting and wondering what more they can possibly do, I see you. I know you’re the captain of a ship on choppy seas, made worse by the tempest our government’s created. It is terrifying to think of weathering this storm alone. So don’t.

There’s a light in this lighthouse and people who will row to shore with you. Just one year ago, we came together as Little Lobbyists, and we’re continuing to grow our fleet. Families like ours are all over this country – connecting, calling, writing, showing up. We learn, share, and communicate with each other and our legislators so our children will have the more just and beautiful future they deserve.

You already have all the skills you need. You’re the one we’ve been waiting for. Join us.

 Some of our Virginia Little Lobbyists families meeting with Senator Tim Kaine.

Some of our Virginia Little Lobbyists families meeting with Senator Tim Kaine.


There are many ways to support Little Lobbyists and get involved!

If you are the parent or guardian of a child with complex medical needs and/or disabilities, share your story with us here. If you would like to learn more and stay in touch, connect with us here. If you would like to donate to help us continue our work, please click here.

Thank you!





 

 

Our Letter to U.S. Senators on the Graham-Cassidy health care repeal bill

Below is a copy of the letter that we have been delivering to U.S. Senators regarding our opposition to the Graham-Cassidy bill:

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September 18, 2017

Dear Senator,

Little Lobbyists is an organization of families with one thing in common: we all have medically complex children requiring significant medical care.  Our mission is to advocate on behalf of the millions of such children across the country to ensure that their stories are heard and their access to quality health care is protected.  We have visited your office previously and hand-delivered the stories of medically complex children in your state whose health and future would have been jeopardized by the legislation under consideration at the time.

We write again because the pending Cassidy-Graham health care bill poses similar danger to the millions of medically complex children in this country, thousands of whom live in your state.  We ask that you stand up to protect our children, and demand that Congress do the same.   

Our current health care laws can and must be improved, about this there is no debate.  However, the Cassidy-Graham bill departs from recent good faith, bipartisan efforts and attempts a massive upheaval of our health care system without input from policy experts or those who would be most affected by its provisions.  In particular, the Cassidy-Graham bill undermines three protections in current law that are vital to the health and well-being of medically complex children and their families:  

  • Decreased Medicaid funding through “per capita caps” and “block grants”.  Private insurance frequently does not cover home/community-based care (such as private duty nursing) and therapeutic care.  Medicaid fills this gap, which allows medically complex children not only to live at home, but to thrive.  Cassidy-Graham’s upheaval of Medicaid will cut billions of dollars nationally from the program relative to current law, with no guarantees that the funds must be spent on the same population.  Under such funding restrictions, optional Medicaid programs, such as the Katie Beckett Medicaid waiver program created by Ronald Reagan to help families care for their medically complex children at home, will likely be among the first eliminated.  In short, under Cassidy-Graham, the vital safety net that Medicaid provides our children is slowly pulled away, with families like ours left to worry constantly whether it will be there when they need it.    
  • Eliminating the ban on annual/lifetime limits.   Many of our children accumulated millions of dollars in medical bills in their infancy before they ever left the hospital.  Under the ACA, insurance companies were prohibited from kicking our children off of insurance plans when their care reached a certain dollar amount.  Cassidy-Graham would allow states the ability to waive these protections.  This means that parents across the nation sitting bedside in Neonatal Intensive Care Units will once again have to worry not only about whether their child will survive, but also whether the hospital stay will leave them bankrupt.
  • Eliminating the ACA’s pre-existing condition protections.   Medically complex children are frequently born with multiple pre-existing conditions.  Protections against discrimination on the basis of these conditions give us the security that our children will not one day be denied affordable insurance because of conditions they were born with.  That security is stolen by the Graham-Cassidy bill, giving states broad authority to waive these protections.  This is contrary to the Republican Party’s own platform, which provides that “individuals with preexisting conditions who maintain continuous coverage should be protected from discrimination.”

We have heard politicians over the past few days tell us that the Cassidy-Graham bill will increase “flexibility” and “choice” for Americans.  That is flatly untrue for our families.  Rather, the bill’s provisions will fundamentally disrupt the safety net that our families depend on, likely leaving us only one unthinkable choice: incur debt far beyond our means, or forego medical care that will keep our children alive and able to achieve their God-given potential.

As we said at the outset, our nation’s health care laws can and must be fixed.  But it is unjust, immoral, and contrary to any reasonable meaning of “pro-life” to pass a health care law that makes it harder for medically complex children to access the care they need to survive and thrive.  Our children have done nothing wrong.  They do not lack personal responsibility; indeed, they show more strength, bravery, and resiliency in a single hospital visit than many people do in their entire lives.  They are just kids who, through no fault of their own, need a little help.  

You can help them now.  Stand with our children.  Hear their stories.  Work with us to ensure their access to health care is not diminished.  We will make ourselves available anytime of any day to discuss our concerns with you in person, and to assist in any way we can toward the goal of a health care system that works better for all Americans. 

Sincerely,

Elena Hung
Michelle Morrison
Co-Founders, Little Lobbyists

Austin Carrigg, Anna Kruck Corbin, Laura LeBrun Hatcher, Ben Zeitler
Steering Committee, Little Lobbyists