Our letter to U.S. Senators regarding Graham-Cassidy

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


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

I Chose Life

I chose life.

I chose life when my husband and I planned to have a baby.

I chose life when we celebrated the two little lines on the pregnancy test.

I chose life when I started to eat healthier, took my prenatal vitamins every day, and eagerly attended every appointment with my midwife.

I chose life at my 20 week ultrasound, when the doctor referred me to a maternal fetal specialist.

I chose life when the maternal fetal specialist said something was not quite right with my baby’s heart.

I chose life when we met with the genetics counselor, who used words like “abnormal” and “atypical” and “syndrome” and “termination.”

I chose life when I was labeled “high-risk” and scheduled for weekly monitoring.

I chose life when I had a million conversations with my doctors and midwives and prepared for every possible scenario.

I chose life when I was induced at 39 weeks because my baby stopped growing and her movements slowed down.

I chose life with each contraction in labor — gentle mild ones over three hours, crazy intense ones over twenty minutes — and when I brought her into this world with three quick pushes.

I chose life when I held her in my arms and kissed her moments after she was born.

I chose life when the neonatologist examined her at bedside and then rushed her to the NICU.

I chose life the next morning when the cardiologist recommended we transfer her to the cardiac ICU at the local children’s hospital.

I chose life when I sent her on her way, armed with the name Xiomara, which means “ready for battle.”

I chose life when we did Kangaroo care every chance we got in that hospital room full of life-saving machines.

I chose life when I handed her over to the surgeon who would perform her heart surgery when she was 11 days old.

I chose life when I pumped breastmilk for her round the clock for months on end.

I chose life when I attended rounds with the doctors every single day and obsessively Googled every new medical condition discussed.

I chose life when I walked her down to the OR to get her tracheostomy and feeding tube placed after she was unable to breathe and eat on her own after nearly three months.

I chose life when I did my trach care training and learned how to care for her medically.

I chose life when my husband and I took turns sleeping at her bedside in an uncomfortable hospital chair for 169 nights straight.

I chose life when we finally brought her home for the first time on a cold December day.

I chose life with every scary 911 call and terrifying ambulance ride that followed.

I chose life when I gave her manual breaths with the AmbuBag every time she turned blue and stopped breathing.

I chose life with every suctioning of the trach, every tube feeding, and every nebulizer treatment.

I chose life every time I forced myself to get back up after breaking down.

I chose life when I fired every therapist, home nurse, and doctor who didn’t have her best interest at heart.

I chose life when I powered through after days without a shower or sufficient sleep.

I chose life when I researched every therapy, medication, program, doctor, and procedure that could possibly help her in any way.

I chose life when I fought with our health insurance to cover the care she needed.

I chose life when I applied for Medicaid on her behalf to prevent our family from financial ruin.

I chose life when I gathered documents and applied for grants to pay for “non-covered benefits.”

I chose life when I helped her with her physical therapy exercises all day long, every single day, so she could finally hold her head up on her own at 8 months old.

I chose life as we learned sign language together so we could communicate.

I chose life with every new therapy toy or medical equipment acquired.

I chose life when we turned occupational therapy exercises into fun games every day.

I chose life when my husband and I attended one doctor appointment after another…after another after another.

I chose life when we loaded up the car and drove 9 hours to Cincinnati Children’s Hospital because they have the best Aerodigestive program in the country.

I chose life every three months when we drove to CHOP in Philadelphia because her pulmonologist there specializes in kids on home mechanical ventilation.

I chose life when my husband and I did her trach care every night and trach change every week to help prevent infection.

I chose life when I lugged her ventilator, oxygen tank, pulse oximeter, feeding pump, suction bag, and emergency bag everywhere we went.

I chose life when we enrolled her in a pre-k special education school program so she could socialize with her peers.

I chose life when we went to story time at the library and waved to the animals at the zoo and and played on the swings at the playground and splashed around in the kiddie pool and cheered loudly at baseball games and watched Sesame Street together.

I chose life when I fought for every chance for her to just. be. a. kid.

I chose life when I met my U.S. Senator and looked him in the eye as I told him why he needed to fight tooth and nail for my daughter.

I chose life when my friends and I walked the halls of the Senate office buildings all summer on behalf of medically complex children across the country in desperate need of access to affordable quality healthcare.

I chose life every single time, every single day. I am still choosing life for my daughter.

The Cassidy-Graham health care repeal bill does not choose life.

It chooses to allow states to discriminate against those with pre-existing conditions, to eliminate essential health benefits, and to bring back the lifetime coverage cap.

It chooses to cut billions of dollars from Medicaid and fundamentally change and weaken the program resulting in millions of Americans losing coverage.

In short, it chooses to threaten the quality of life of the most vulnerable amongst us, including our children.

If you support this bill, you don’t get to call yourself pro-life.  If you support this bill, you are not choosing life.

I chose life.  If you also choose life, join me in this fight.

~ Elena

I’m Jackson, and I speak for the children.

A speech by Jackson, age 12, given at the #ProtectOurCare rally on September 6

 Good morning. My name is Jackson Corbin and I am 12 years old. My brother, Henry, and I have Noonan’s Syndrome which means we have a lot of health issues and we spend a lot of time at the doctor.

I love the Dr. Seuss book, The Lorax. My favorite line is “I am the Lorax and I speak for the trees.” I love how confident the Lorax is and how he knows he must speak for those who cannot. I think I’m a lot like the Lorax. I’m Jackson and I speak for the children.

Henry and I have been coming to Capitol Hill since March fighting for healthcare. In July, we teamed up with the Little Lobbyists to help them fight too. We visit Members of Congress to tell them stories of children with medical complexities. Most of these children can’t come to speak for themselves. Some live too far away to come to Washington
D. C., some are too sick to travel, and some children are unable to speak at all. But that doesn’t mean they shouldn’t be heard.

You may wonder why kids think they have the right to stand up and speak for their healthcare. You may think we don’t belong on Capitol Hill. Well, we might be kids but we’re still Americans.

When we hear our Members of Congress talk about repealing the ACA or cutting Medicaid, they’re threatening our lives, our liberty, and our pursuit of happiness.

In six years I get to vote and, believe me, I will remember all of this. I will remember the Senators who heard our stories, smiled, patted us on the head, then turned around and voted to take our care away. I will remember you.

No matter how long it takes, I will keep fighting until all voters and all Members of Congress understand the importance of the ACA to children with medical complexities in the United States. The ACA/Medicaid gives our parents the opportunity to focus on our care, our education, and our well-being without having to worry about how they will pay for our medical bills. We deserve the chance to be healthy, to grow up, and to lead this country one day.

I want to thank all of you for fighting for us. We cannot do this alone. It’s so important that we work together to fight against anything that hurts the poor and the sick.

I told you that I love the Lorax and, actually, I have a second-favorite line from the book. My Mom says it to me and Henry every time we make the long drive from Pennsylvania to Capitol Hill. I want to share it with all of you and I challenge each of you to say this to yourselves every single day: “Unless someone like you cares a whole awful lot, nothing’s going to get better. It’s not.”

Let’s save the ACA, save Medicaid, and protect our care!

Help send supplies to children who are medically complex impacted by Hurricane Harvey

For the most up-to-date information on Harvey relief efforts, visit Protect TX Fragile Kids.


As I’m sure you’ve heard, portions of Texas have been devastated by flooding from Hurricane Harvey.  As parents of children with complex medical needs, this terrifies us; we know first-hand how crucial medical supplies are to keeping our children alive and safe, and relief organizations are often ill-equipped to handle specialized medical needs.

Last year, when Louisiana was devastated by flooding, medical supply companies were incapacitated.  Children with complex medical needs were at increased risk for illness and infection due to the compromised air quality as a result of the toxic flood waters.  A year ago, before Little Lobbyists existed, many of the families who are now part of Little Lobbyists banded together, collected pediatric medical supplies, rented a U-Haul and drove them down to Louisiana, where they were distributed by the Trach Mommas of Louisiana to local families with children who had lost all their medical supplies in the flooding.

This year, Little Lobbyists are partnering up with Trach Mommas of Louisiana, Protect TX Fragile Kids, The Parker Lee Project, Advocates for Medically Fragile Kids NC, and Moms of Trach Babies to help out our friends in Texas.  We need to move quickly.  We are collecting pediatric medical supplies and are connecting with local families and organizations in and around the Houston area so that supplies can be distributed to the children who need them.

How you can help:  Donate medical supplies or funds!  

If you’d like to make a monetary contribution:

If you have medical supplies to donate:

Medical supplies must be unopened, unused, and unexpiredFor suggestions on packing and organizing your supplies, click here.

  • If you are in Texas and have surplus supplies, Texas drop-off locations are on this map.  

  • The Parker Lee Project is no longer accepting donated supplies

  • We are no longer accepting donations in the Washington, DC area.
  • You may ship or deliver supplies to Trach Mommas of Louisiana at the following address:

Trach Mommas of Louisiana
11725 Industrialplex Blvd Suite 3
Baton Route, LA 70809

Deliveries are by appointment only.

If you want to volunteer to distribute supplies locally: 

If you are in Texas, please fill out this form to help us plan.

If you are in Louisiana, please fill out this form to help us plan.

 

If you have questions, please email Elena Hung and Michelle Morrison at contact@littlelobbyists.org and we will direct your question to the appropriate individual.

Thank you!!

The moment we realized people were listening

When you spend day after day walking the halls of the Senate Office Buildings, telling your stories and those of other families like yours, you spend a lot of time wondering if anybody is listening, if anything you’re doing is making a difference. There’s a lot of self-doubt in putting yourself out there: is there any point in speaking up? Is putting our children in the public eye really worth it?

We had meeting after meeting and went into one office after another. We told our stories with sympathetic staffers; we met people who nodded at all the right times and who told us they cared about our children. We spoke with the press and told our stories at rallies and press conferences. We shared stories on Twitter, and watched the retweets and likes pour in. And yet, in spite of it all, several weeks in, we found ourselves wondering, “Is anybody listening? Is all of this effort making any difference at all?

We had been keeping careful track of our office visits. We have a spreadsheet and pages of color-coded notes. We knew who we had visited, in which offices we were able to meet with a staffer, who the staffer was, and whether or not we had followed up. We were also keeping track of the senators we had met. A few of them we wrote in parentheses, because they were chance hallway encounters, and we didn’t figure that really “counted.”

One of those chance encounters was Senator Jack Reed, from Rhode Island. On our first day on Capitol Hill, our two families were in the Senate Democrat media center recording our story for #AmericaSpeaksOut. Senator Reed came in while we were there. He came up to us, greeted us, greeted our kids (“Hi, I’m Jack!”), he asked about our kids, and we told him a little bit about our stories and what we were doing. We showed him our binder. But because it was only a chance encounter and not a planned meeting, and because we didn’t have any stories from families in Rhode Island to share with the senator (yet), we wrote his name in parentheses on our list, figuring it didn’t count as a “real” meeting.

A month later, we stopped by Senator Reed’s office. His staffers recognized our children Timmy and Xiomara and said to us, “You met the Senator, didn’t you? About a month ago? He kept talking about meeting you, and he spoke about your kids on the Senate floor the next day.”

We dropped off some materials, thanked them, and left. We piled our kids into an elevator down the hall (no easy feat!) and were about to head downstairs when one of Senator Reed’s staffers ran down the hall. “The Senator just came back,” she said, “and we told him you stopped by. He wants to see you.” And so we headed back–he did, indeed, remember us. We chatted with the Senator for a few minutes; he asked about each one of our children; we thanked him for his support; he thanked us for sharing our stories.

That evening, we went home and searched on YouTube for Senator Reed’s Senate floor speech from the day after our initial encounter. And sure enough, he did talk about our children. A chance encounter, a meeting we thought was so inconsequential that we were writing it in parentheses, and a U.S. Senator told our stories on the floor of the Senate.

That’s when we realized that people are listening. That’s when we realized that when you tell your story, you never know where it will end up, or what the impact will be. And that’s when we truly began to understand the importance of what we are doing and the power of stories.

Senators Collins and Murkowski have both spoken about stories they’ve heard from their constituents and the impact those stories have had on them. We have heard on multiple occasions the impact our stories have had, and we have seen that a personal story has the power to influence a national debate.

And that is why we keep saying, “Speak up. Share your story. Your voice matters.” Because your voice does matter. Your story matters. And when you send your story out into the world, you never know where it will end up or the power that it will have.

~by Michelle

 

 

 

Jeff Flake Looked Me in the Eye and Then Voted to Take Away My Daughter’s Healthcare

Guest post by Austin, from Arizona

Many have praised Senator Jeff Flake’s recent piece in Politico as an act of courage. As an Arizona constituent, I only wish that courage was matched in his recent votes. In the piece, he wrote “too often, we observe the unfolding drama along with the rest of the country, passively, all but saying, “Someone should do something!” without seeming to realize that that someone is us.”

And yet, Senator Flake voted “yes” three times on the attempts to repeal the Affordable Care Act, and in so doing, cut Medicaid by $772 billion. His last yes vote was hours after meeting with my family, his constituents from Arizona, in his DC office.

In that meeting, we shared my daughter Melanie’s story with the Senator. We shared how when we brought Melanie home from Hawaii in 2012 she was in congestive heart failure. We shared how our delight and excitement about our new daughter soon turned to an unimaginable fear.

Imagine for one moment you were us: 3 days after bringing your infant daughter home, you are told that she needs open heart surgery. That surgery would need to occur within the next two weeks – and to receive that surgery, you need to put a deposit down of 10 percent of the estimated cost. Imagine that number is one million dollars, and in order for your child to live, you need to come up with $100,000 – and remember this needs to happen within a week. Imagine hearing that over the course of thirty minutes, during which you are inundated with forms outlining expected fees. Imagine that even though you have what is considered to be the best healthcare insurance in America, Tricare, you cannot get her enrolled quickly enough to cover the procedure – even though her life is literally at stake.

That was the story I shared with Senator Flake. I then told him that due to the passage of the Affordable Care Act, Melanie was saved; thanks to Medicaid, we made the payment.

Doctors predicted that our little girl would never walk or talk, and that we shouldn’t put much faith in her having a bright future. But as Senator Flake saw with his own eyes, the doctors were wrong. Against all odds, today she runs around, plays with her siblings, climbs bunk beds when we aren’t looking, and gives all the sass any soon-to-be 5 year old can give.

In Senator Flake’s office that day, I told him how fundamental the ACA was to our family. How, the ban on lifetime caps is the only way to guarantee my child life, how terrifying it is to allow insurance companies to discriminate against those with pre-existing conditions, and how vital Medicaid is to my family. I appealed to him as a parent and as an American. I asked him to do more than vote without hearings or expert testimony – I asked him to do more than simply vote with his party. He literally just wrote a book about bravery in the face of party pressure.

Senator Flake listened to me explain how I chose life. How my husband and I chose to take the “personal responsibility” to adopt our beautiful daughter. He watched her playing in her brother’s arms. He looked at the medical bills in my hands that detailed the out-of-pocket expenses –  totaling $13,092 a month – to cover home nursing. (Children like Melanie can’t go to regular daycare, because they have medical needs that require skilled nursing.) Tricare does not cover nursing if you work or go to school. Medicaid does. So many people talk as though Medicaid is about people not wanting to work, but for us, it’s the exact opposite. Medicaid allows me the opportunity to work.

Senator Flake heard me explain how vital Medicaid is in our lives, how it covers things Tricare outright refuses, how critical it was to saving my daughter’s life shortly after she was born – and how fundamental it is to her future.

He looked at my daughter, he looked at those numbers on the bills, and he uttered “oh my word.” He heard my friend, who joined us in the meeting with her medically complex daughter, ask “please think of Melanie and children like her when you cast your vote.” And then, hours later, he voted on party lines: yes. Yes to repeal, yes to ripping away Melanie’s security, yes to a process he himself said “no one could defend.”

So, Senator Flake, I am trying to understand the reasoning behind your votes. I am an Arizona voter. You are my Senator. You represent me. You represent Melanie. Please help me understand how your “yes” vote represented my family.

You wrote that “someone should do something” and that “that someone is us.”

That someone was you, Senator Jeff Flake. And you voted yes.

~ by Austin Carrigg

This Island

Being a parent of a medically complex child is a terribly isolating experience. It is lonely as lonely gets. The moment you hear that initial diagnosis, you are instantly transported to a tiny island. Population: you.
 
Last month, in a moment of hope and desperation, my friend Michelle and I decided to take our kids to Capitol Hill so senators could see the faces of those who would be affected by their votes on healthcare. We wanted them to know our kids and see that kids with trachs and feeding tubes and rare syndromes and medical records a mile long are just kids…who need healthcare.
 
We asked families like ours across the country to share their stories, and we offered to hand deliver them to their senators.
 
And share, they did.
 
For the past six weeks or so, I have been surrounded by parents just. like. me. Parents who really understand and just *get it.*
 
I have been surrounded by parents who know what it’s like …
 
… to feel completely helpless as you watch your child fight for her life;
 
… to hand over your baby to a surgeon, moments after signing consent forms detailing the worst case scenarios;
 
… to sleep in an uncomfortable hospital chair night after night after night;
 
… to completely fill your calendar with your kid’s medical appointments and therapy sessions;
 
… to get back up again after falling apart, over and over;
 
… to be a little too familiar with 911 calls, ambulance rides, and emergency room visits;
 
… to celebrate the ‘inchstones’ that no one ever thinks about, like your child breathing without the help of a ventilator for 30 minutes or your 3yo learning to eat by mouth.
 
I have been surrounded by parents who know what it’s like to drown in the loneliness, day after day.
 
Like I have been doing for weeks, I spent all day Thursday on Capitol Hill visiting senate offices with a binder full of stories of children just like my daughter. At the end of the day, I inhaled a terrible dinner and rushed to a MoveOn rally where I listened to story after story from people just like me, and heard senator after senator promising to fight tooth and nail for all of us. And then I stood with my Little Lobbyists family next to me, as I took my turn at the mic, to tell everyone why we needed to keep sharing our stories.
 
When the vote was announced later that night, I felt relief more than anything. Though I know this fight is not over, I felt relief that we were safe for now. And relief that my daughter would continue to receive the medical care and services that will allow her to survive and thrive and … be a kid.
 
I stayed late at the Capitol that night with my friend Michelle and my 3 yo daughter Xiomara, thinking of all the stories I had heard. The crowd had all gone home; it was quiet and near empty and almost 4am.
 
At this weekend’s Our Lives on the Line rally, I got to meet and hug Ali Chandra, an amazing mama fighting for her kid, and my kid, and all kids. I got to tell Natalie Weaver, who is as kind as she is fierce, that she inspired me to share my story publicly. I got to hear Democratic Leader Nancy Pelosi thank the Little Lobbyists from the stage for sharing our stories.
 
We marched to the White House after the rally, alongside hundreds and hundreds of people who believe what I believe: that healthcare is a human right.
 
For the past six weeks or so, I didn’t feel lonely at all. Not one bit. I didn’t feel lonely in the halls of senate office buildings, or at the rallies, or at the Capitol at 4 o’clock in the morning. I have been surrounded by the love and strength of families who have walked in my shoes and felt my fear and shared my hopes.
 
To the parents hearing that diagnosis for the first time right now, and to the parents who are feeling lonely like I once did, I say to you: there is an army of parents just like you on this island. We understand.
 
And, we can’t wait to hear your story.
 
Speak up, my friends. Your voice matters. Your story matters.
~ by Elena

Photo courtesy of Carrie Collins

Our response to today’s vote

Today’s vote leaves us heartbroken, terrified, furious… and more committed than ever to fight tooth and nail for our children.

These are not new emotions for parents of kids with complex medical needs.  We experienced them every day for months in hospitals across the country, as our infant children were given unimaginable diagnoses and we slept in chairs beside them as they clung to life. We experience them as we beg doctors, nurses, social workers, and therapists to give our kids quality care and attention, so they can one day breathe on their own, or walk on their own, or go to school with their peers.  It is stressful, and it is exhausting, and you never give up, because they are your kids.

For the past several years, at least, we at least had the comfort of knowing we had a safety net under us. When medical bills went into the millions of dollars, we knew that our insurance companies could not put a cap on the care our kids need to survive. We knew that the preexisting conditions that they were born with would not make insurance unaffordable or impossible to maintain.  And many (though not all) of us knew that Medicaid could help to pay for the necessary care that private insurance would not.

The proceedings over the past several months, culminating in today’s Senate vote, ripped that security from our families.

This is why we have visited Capitol Hill on a near daily basis for the past month and have been actively working against this bill in other ways for much longer.  It is not our idea of fun.  We really, really do not enjoy the publicity.  We do not have a secret political agenda.  Our agenda is that we are terrified that our kids are going to lose the care they need to survive and thrive, and we will do whatever we can to make sure that doesn’t happen.

Today’s vote confirmed that fear.  We must now watch as the Senate takes as little time as it possibly can to decide the fate of our children.  We must now depend on Senators whose public statements questioning this process and expressing concern for the vulnerable have been shown to be disingenuous at best.  Senators who have not held a single hearing to educate themselves on this bill, who have thus far ignored the chorus of health professionals pleading with them to “do no harm,” and who have shown zero interest in meeting with us or our children to hear our concerns.

But we have faced fear before, and overcome it.  Our children have taught us well. 

So tomorrow we will be back fighting our hearts out on Capitol Hill.  We will go to every Republican Senator’s office that we can and show them the hundreds of stories of medically complex kids that we have collected. We will ask them to meet with us personally. We will ask them to understand our issues and fears.  We will ask them, consistent with their ardently professed pro-life beliefs, to commit to protecting our children.  It will be stressful, and it will be exhausting, but we will never give up, because they are our kids.

To everyone that has supported us, and especially those who have been brave enough to share their stories with us – thank you.  This is not over, and we need your voices as loud as you can make them for the next few days.   To those of you who, like us, have children with complex medical needs, we want to share your stories. Please share them with us.

Dear Senator Capito

This is a letter written by Christy, from West Virginia. Her son, Ethan, is one of our Little Lobbyists and Christy and Ethan have been trying, without success, to schedule an in-person meeting with Senator Capito. This is a letter we delivered to Senator Capito this morning:

Dear Senator Capito,

As a constituent I am requesting you to not abandon ACA protections without other protections in place. My concern is not the name of the legislation but what the legislation can do to protect children like my son Ethan. West Virginia relies on 77% of its Medicaid funding from the federal government. If that funding is reduced, simple math indicates cuts in services will have to occur. Over 2,000 children in the state depend on the Medicaid waiver programs which potentially would be cut or capped because their families’ income excludes them from SSI benefits. Without this benefit, children will not be able to receive or would receive reduced access to necessary therapies and other services. They could lose access to private duty nursing which in turn would eliminate the possibility of them safely attending public school in the least restrictive environment as guaranteed under current federal IDEA law. Such a loss would also put their families under additional financial and emotionally stress. These children did not ask for these disabilities, neither did their families. They need to be protected and deserve to be protected; it should not matter which state or county they reside in they are Americans, and need their government to look out for them.

At 17 years old, I signed up for the VA army national guard and served 6 years while completing my teaching degree. I currently teach high school history and my classes are offered as Duel Enrollment meaning that my students earn college credit. My husband volunteers in our community and will receive a social work degree in May.  He is a former small business owner. We are active members of our community trying to make it better who also support the local economy.

If we lost access to Medicaid, one of us would have to resign from our positions to take care of Ethan. He would not be able to attend public school and would receive homebound instruction. This is not fair to him, to us or to the community that we try and serve.

Ethan deserves the same opportunities as any other child within our community. We love him, we love our home, which we bought 12 years ago, we love our community. As our representative please remember Ethan and other children like him when you cast your vote. I know in the eyes of the country we are just one more family, but this weekend you made time to spend with President Trump but you have not had time to meet with us and you are OUR representative. If you can’t meet with my son please take the time to meet with the children who are walking the halls of Congress this week. They are there representing my son and thousands of children with disabilities who are too sick or live too far away to come and visit. Please think of these kids before you cast what likely will be the deciding vote.

Thank you,

Christy

Inwood, WV

Henry and Jackson

Guest post by Anna. Her sons, Henry and Jackson are two of our Little Lobbyists. For months, they have been driving two and a half hours (each way) to lobby on Capitol Hill. This is their story. 

In September of 2009, when my son, Henry, was seventeen months old, he had a Meckel’s Diverticulum rupture in his stomach.  He has a bleeding disorder known as Von Willebrand Disease, and because his blood does not clot properly, he faced a total medical crisis.  A rare, usually insignificant, problem led to complications that resulted in Henry almost bleeding to death. He was rushed to Johns Hopkins hospital, where he received a blood transfusion, and spent ten days in the ICU while the doctors at the hospital saved his life.  On the last day of Henry’s stay, all the veins in his little arms, legs, feet, and hands had collapsed due to the constant blood draws to monitor his blood factor counts.  For his final blood draw, they had to take the blood from his scalp.  I stood outside of the room, because I couldn’t bear to watch. I was weak. I was exhausted. And I was hungry. I’d spent all ten days and nights in the hospital with Henry. At first, I had been living off of Doritos and potato chips from the vending machine until the last four days of his stay, when my husband’s co-workers had all chipped in to buy me a Subway gift card for the Johns Hopkins food court. We were a family living on one income with two children with medical complexities. We were in over our heads in medical debt and credit card bills. Our budget did not allow for us to eat at food courts. When Henry’s blood draw was over, we filled out the discharge papers, and headed home to Pennsylvania.  Henry had been on a strict hospital food diet, was still hiccupping from screaming during his blood draw, and had one simple request when I strapped him into the car. “Nuggets?” he asked me. So I pulled into the nearest McDonald’s, counted out enough money from the change that was in the console of our car, and I bought my brave boy a Happy Meal.

My name is Anna. I am a stay at home mother of two, who lives in Hanover, Pennsylvania, and I never thought that I would ever need Medicaid. My husband and I began our married life in 2004 in a comfortable position in the middle class. We both had good jobs, and were thrilled when we found out we were expecting six months into our marriage. After our son, Jackson, was born, I found a happy balance between work and home. When Jackson was two years old, I found out that I was expecting my second son.  At that same time, Jackson began having some inexplicable health issues. He kept getting sick, and we didn’t know why. I was missing so much work that my husband and I decided that I should quit my job to give Jackson my full attention, until we could figure out what was wrong.  Losing half our income was difficult, but it was manageable, as long as we adhered to a strict budget. In February of 2008, I gave birth to Henry, six weeks early.  His health issues began immediately. He spent over a week in the NICU, and was diagnosed with a heart defect and failure to thrive at two months old.  Thanks to Google and a very attentive pediatrician, we discovered the answer to both of our sons’ medical issues in October of 2008, when Jackson was three years old and Henry was eight months old. They have a mutation of the PTPN11 gene, also known as Noonan Syndrome.

When children are diagnosed with a genetic condition like Noonan Syndrome, which affects various systems of the body, they are referred to a hospital that specializes in rare diseases for genetic counseling.  We were sent out of state to Johns Hopkins hospital, where they began testing the boys for every possible complexity related to NS. Our financial situation had already become more strained with Henry’s NICU stay, cardiology visits, and the genetic testing. Jackson and Henry’s diagnosis had cemented my decision to stay home, so we were still only on one income. My husband’s employer insurance had high deductibles and copays.  Once we began adding more specialists, procedures, and prescriptions to their medical care, the financial strain became a lot to bear. We relied on credit cards for everything. It was not only the medical bills. It was the added costs of gas money to get to Baltimore multiple times a month.  It was the cost of having to purchase meals when the visits lasted through lunch and dinner.  Henry’s Meckel’s Diverticulum rupture really pushed us over the edge. By 2010, our credit cards totaled $42,000, and we were receiving medical bills in the mail every day.  Because the credit card balances were so high, and the cards were maxed out, the card companies closed them.  Without the safety net of the credit cards, we were lost.

Our financial worries were nothing compared to the worries about our children. 

As is common with genetic conditions, the boys were always getting additional diagnoses, which meant more specialists and prescriptions.  Our lives were a jumbled mess of surgeries, specialists, prescriptions, hospital stays, emergency room visits, and lots and lots of debt.  I can’t begin to tell you what it’s like to see BOTH of your babies suffer. Spending their toddler years in hospital beds. Throwing up at their own birthday parties. Missing trick-or-treat and Christmas parties due to illnesses. Not getting to roller skate or play sports or rough house like other children, because of their low muscle tone and bleeding issues.  But to watch all of that – while not able to make up for all they were missing with other activities, like movies or vacations or trips to the zoo – was heartbreaking. During the times they were feeling better, we couldn’t do anything, because we couldn’t afford it.

Our days and nights were spent caring for the boys – distributing their medicines, cleaning up vomit, monitoring fevers, and keeping them from injury.  I also spent that time trying to find ways to pay for their care.  We held multiple yard sales a year. I would sell the boys’ clothing as soon as they outgrew it. If it was a few days before payday, and we needed to pick up a prescription, I would find a childhood keepsake and put it on eBay. Or I would choose a piece of furniture that we did not use often, and I would put it on Craigslist.  We collected change, and we would cash it in for baby food, for gas, for milk. Sometimes there was nothing we could do.  At one hematology visit, the boys had eighteen tubes of blood taken.  It had been a rough day, and they wanted Happy Meals on the way home. But our bank account was overdrawn, and there was no change in the console. So I listened to my two little boys cry in the backseat the entire way home, over their sore arms and empty bellies. They would have to wait over an hour until we arrived home to eat.

I heard about Pennsylvania’s Medicaid program for children with disabilities though a fellow Noonan Syndrome mom on Facebook. I had always assumed that Medicaid was only income based, and I did not think we would qualify. After I researched the program, it seemed to be the answer to our financial problems. It was not an easy decision, though. Johns Hopkins had saved my children’s lives. Since Medicaid doesn’t cross state lines, we would have to make the switch to Hershey Medical Center, and say good-bye to the physicians we had come to trust. But at that point, we were on the verge of filing bankruptcy and losing our home. So we did it. We applied for Medicaid in June 2012. In no time at all, the boys were approved, and Medicaid began paying all of the boys’ deductibles and copays. Anything that my husband’s employer insurance doesn’t cover, Medicaid takes care of it.

It is important to me that people understand the true benefits of Medicaid.  It is not only the medical care. It is also the feeling of finally being financially responsible. It is the feeling of self-worth. It is knowing that we can pay our bills. It’s the comfort of no longer having to decide between picking up a prescription and picking up a gallon of milk.

From 2008 until 2012, we had nothing. We did nothing. We went nowhere. Our only trips were trips to the hospitals, or were hosted by generous family members.

But now we pay our bills. We did not lose our home. We did not file bankruptcy. Slowly, but surely, without the hundreds of dollars a month in medical bills, we are pulling ourselves out of the rubble. We are paying our debts. We stopped getting collection notices. We stopped getting insufficient funds fees. We stopped being a burden on the utility companies and the credit card companies. My children now eat better, because healthy food is expensive, and when we were struggling, we could not afford fresh fruits and vegetables. In the five years since the boys were approved for Medicaid, we have been able to start getting on our feet and rejoin society. Our credit card debt is now below $10,000. Bill collectors haven’t called us in years. Our credit score doubled, and we are stimulating our economy.  We still have to live on a budget. We are still on one income, because the boys’ immunity and stomach issues contributed to a decision to homeschool. Life as a parent of children with medical complexities will never be easy, and it will never be worry-free. But we are surviving. We no longer feel hopelessness. We are grateful for the security that Medicaid has provided. My husband and I went years without sleep, worried about our children, worried about money, and worried about how we would pay for the next major health crisis. We now know what security feels like, and we can focus all of our time and attention on keeping our children healthy.

If cuts are made to Medicaid, the states will need to decide who will be affected. Often, when these cuts are discussed, state legislatures consider the families like ours, who qualify for Medicaid under a disability waiver. They do not think of the families who have more than one child with medical issues, or the severity of those medical issues, or the costs of the deductibles, the treatments, the prescriptions, the emergency room visits. Or the gas money to get to nearest hospital qualified to care for medically complex children, which could be an hour, or two hours, or three hours away. My husband’s income could double this year, and if my boys lose their Medicaid, we would still go bankrupt within a few years.

I have already been where we are headed. I already know what it’s like to NOT have Medicaid. The sleepless nights, the going without, the fear of losing everything – all of that is still fresh in my mind. My heart aches for those who are about to find out what that is like.

I do not want to go back to that life. My children have been through too much and come too far for me to tell them that we are going back to where we were.  

It is inconceivable to me that any member of Congress would do that to children, especially children who already struggle physically and emotionally.  It is inconceivable to me that any member of Congress would do that to parents who already struggle physically and emotionally as they care for their children with medical complexities. It is inconceivable to me that any member of Congress would consider cutting a family’s lifeline.  Medicaid is a lifeline. Families affected by poverty or medical complexities cannot survive without it. Every single American is one job loss, one diagnosis, or one accident from needing it.  Making cuts to Medicaid is equivalent to cutting off a family’s heat in the winter, or taking a child’s shoes away, or clearing their cupboards of food. Because without Medicaid, many families cannot afford heat, or shoes, or groceries. Trust me.

Congress is not just taking our healthcare funding.

They are taking everything.

And I will fight with everything I have to hold on to it.

#saveMedicaid #savetheACA #protectourcare