What Does Eliminating The Medical Expenses Deduction Mean For Families With Medically Complex Children?

The medical expenses deduction allows individuals and families with high medical costs, such as those who have children with complex medical needs, to deduct these costs from their income taxes. The current version of the House GOP tax plan would eliminate the medical expenses deduction. This will have a negative impact on many of the families whom we represent; families like James’ whose story we first sharehere. While James’ ventilator breathes for him at night, the new tax plan does nothing to help his mother, Jenny, breathe easy. Below is her story, and what the medical expenses deduction has meant to her family.

Our son James was born in April 2011 and was not released from the hospital until January of 2012. We lived in a rural part of California, and the closest hospital with the capacity to care for our son was almost 200 miles away.

During the nine months our son was hospitalized, we were basically commuter parents. When your child is in the hospital for a few days or weeks, you can take time off of work. When your child is in the hospital for nine months, and there is no conceivable end in sight for his medical issues, you have to go back to work. We would drive up to the hospital on Fridays after my husband got off of work. We would stay near the hospital Friday night through Saturday afternoon, then we would drive home. Mondays I would do laundry and try to have at least one normal day a week for our other daughter, who was only sixteen months old when our medically complex son was born. On Tuesdays I would drop our daughter off with my parents, and drive up to the hospital Tuesday through Thursday. Thursday night I would drive home and then we would do it all over again. Every week. For nine months.

As you can imagine, this got very expensive.  That year, we drove more than 20,000 miles for medical care.  That’s a lot of trips to the gas station.  Every once in a while we would get lucky and get a room at the Ronald McDonald House, which only charged $10 per might, but most of the time the McDonald House was full and we were on our own to find a hotel.  Then there were copays, deductibles, and medical equipment that was not covered by our insurance that we had to pay out of pocket.

In all, that year we were able to deduct nearly $20,000 in expenses related to James’ medical care – far less than what we actually paid out of pocket, but being able to deduct those expenses made a huge difference for us.  In the years since, we generally spend at least a few thousand dollars a year out of pocket on medical supplies that our insurance doesn’t cover.  For example: my son uses a ventilator to breathe for him overnight, and the only connectors that our medical supplier provides are incorrectly sized and pull at his tracheostomy stoma, causing pain and bleeding. We have to order a different brand of circuit connectors out of pocket.  There’s also travel for necessarily hospital visits.  In some years, these costs were high enough that we have been able to deduct them using the medical expenses deduction as well.

If the medical expenses deduction is eliminated, our taxes would increase, because our taxable income would increase. The out of pocket medical expenses we pay for our child are a constant: we simply cannot stop driving to medical appointments or buying extremely specialized medical equipment and supplies. We’ll still be on the hook for his medical expenses, but the extra money we’ll be paying in taxes means we’ll have less money for everything else in life.

Submitted by James’ mother, Jenny

 

Anonymity

 I keep thinking about anonymity. That’s what President Obama gave us. For 6 years, since my son’s birth in 2010, I was able to post pictures of my children to just my friends; to celebrate, to enjoy, and to brag about how wonderful they are, just like a lot of other parents do on social media.

We didn’t have to publicize my son’s story on national media outlets.

The ACA gave us the ability to focus on our children, not on saving healthcare for all Americans.

Why is it different now? Why do we have to tell the world who we are and what we are fighting for? Because it’s difficult and sometimes nearly impossible for people to care about an issue if there isn’t a face on it or they don’t know someone who is affected by it.

That’s why we’ve seen such overwhelming support from 275 parents from 48 states submitting their stories to not only us, but to many other story-collecting, awareness-raising entities, not because they are bragging about their kids or celebrating who they are (though that’s a big part of it), but because they want people to see that their children are real people, worthy of life, and endlessly valued. There’s been parents who have accidentally submitted their stories to us more than once; they’ve submitted their child’s story to so many places, they’ve lost track of who they’ve contacted and who they haven’t. That’s not pride in your child. That’s desperation. That’s very real fear. And that’s why we fight.

100% of parents who have submitted their child’s story to us have told us to share their stories with their Members of Congress. 95% of these parents have said they are willing to share their child’s story with media outlets. It’s such a high percentage because these parents understand the value of public pressure on their Member of Congress through the media. They have come to terms with releasing their child’s information, their diagnoses, their interests, their struggles. They’ve been open about how vital insurance and Medicaid are to the health and well-being, the survival of their child and their families (these are families who have every type of socio-economic status imaginable). They have shared their child’s story openly with the public in an effort to humanize their child and to show our nation’s lawmakers that a vote for humanity should not be partisan.

It should be a given.

What is CHIP?  What do I need to know? Could my child’s health insurance be at risk?

CHIP (Children’s Health Insurance Program) provides low-cost health coverage to children in families that earn too much money to qualify for Medicaid but cannot otherwise afford or access coverage. In 2016, 8.9 million children had health insurance because they were covered by CHIP. 

• Every state offers CHIP coverage 

• Each state has its own rules about who qualifies  

• Each state has a different name for CHIP 

• Funding for CHIP comes from the state AND federal government.

• Until now, CHIP had bipartisan support. But this year, federal funding for CHIP was allowed to expire on September 30. 

WHO NEEDS CHIP?

Rory, age 5, loves taking care of his new kitten. Sophie, age 8, loves to draw. Molly, age 13, loves family movie nights. Molly also has Rett Syndrome, uses a wheelchair and depends on specialized medical care to stay healthy. Sophie, Rory, and Molly’s parents are hard-working small business owners who can afford quality health care for their kids because of the CHIP program, which covers many middle-class families who don’t have access to health insurance through an employer.  

(Photo of a dad with three children who depend on CHIP. Photo used with permission from family).

If Congress doesn’t pass funding for CHIP, 8.9 million children like Sophie, Rory, and Molly will lose or have reduced access to the health care they need very soon.

YIKES! WHAT SHOULD I DO?

If your health insurance is from a state program (or if you’re not sure), check the chart below  to see if it’s on the list. If it is, call the program directly and ask what the plan is for your child’s coverage when federal funding runs out.Then, whether your child’s health care is at risk, or you just care about the health of 8.9 million kids — call your legislators at 202-224-3121 and tell them they MUST FUND CHIP NOW!  

CHIP PROGRAMS BY STATE, NAME OF PROGRAM, AND WHEN FEDERAL FUNDS ARE PROJECTED TO RUN OUT.

Alabama

ALL Kids

January-March 2018

Alaska

Denali Kidcare

January-March 2018

Arizona

KidsCare

October-December 2017

Arkansas

ARKids First

April-June 2018

California

Healthy Families

October-December 2017

Colorado

Child Health Plan Plus (CHP+)

January-March 2018

Connecticut

HUSKY (Part B)

October-December 2017

Delaware

Healthly Children

January-March 2018

Wash. D.C.

DC Healthy Families

January-March 2018

Florida

Florida KidCare

January-March 2018

Georgia

PeachCare for Kids

January-March 2018

Hawaii

QUEST

October-December 2017

Idaho

Idaho Health Plan

October-December 2017

Illinois

ALL Kids

July-September 2018

Indiana

Hoosier Healthwise

April-June 2018

Iowa

Healthy and Well Kids in Iowa (Hawk-I)

April-June 2018

Kansas

Healthwave

January-March 2018

Kentucky

KCHIP (Kentucky Children’s Health Insurance Program)

January-March 2018

Louisiana

LaCHIP

January-March 2018

Maine

MaineCare

April-June 2018

Maryland

Maryland Children’s Health Program (MCHP)

January-March 2018

Massachusetts

MassHealth

January-March 2018

Michigan

MIChild

January-March 2018

Minnesota

MinnesotaCare

October-December 2017

Mississippi

CHIP

October-December 2017

Missouri

MO HealthNet for Kids

January-March 2018

Montana

Healthy Montana Kids

January-March 2018

Nebraska

Kids Connection

April-June 2018

Nevada

Nevada Check Up

October-December 2017

New Hampshire

Healthy Kids

April-June 2018

New Jersey

NJ Family Care

July-September 2018

New Mexico

New Mexikids/MexiTeens

July-September 2018

New York

Child Health Plus (CHPlus)

January-March 2018

North Carolina

NC Health Choice for Children (NCHC)

January-March 2018

North Dakota

Healthy Steps

April-June 2018

Ohio

Healthy Start

October-December 2017

Oklahoma

SoonerCare

April-June 2018

Oregon

Healthy Kids

October-December 2017

Pennsylvania

CHIP

October-December 2017

Rhode Island

Rite Care

January-March 2018

South Carolina

Healthy Connections Kids

July-September 2018

South Dakota

CHIP

January-March 2018

Tennessee

CoverKids

April-June 2018

Texas

CHIP

January-March 2018

Utah

CHIP

October-December 2017

Vermont

Dr. Dynasaur

January-March 2018

Virginia

Family Access to Medical Insurance Security (FAMIS)

January-March 2018

Washington

Apple Health for Kids

January-March 2018

West Virginia

CHIP

January-March 2018

Wisconsin

BadgerCare Plus

January-March 2018

Wyoming

KidCare CHIP

April-June 2018

Buy a T-shirt and support the Little Lobbyists!

We’re celebrating the recent defeat of the Graham-Cassidy bill but we know that this is far from over, and the Little Lobbyists will continue to fight! Due to popular demand, we’ve reopened our T-shirt fundraiser. Buy a shirt and support our advocacy efforts for kids with complex medical needs! The shirts are soft and comfortable and come in both youth and adult sizes. Shirts can be ordered through October 8. All funds raised will support our advocacy efforts.  Buy a shirt and show your support for kids with complex medical needs. Thank you!!

 

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, please 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:

UPDATE:  We are no longer accepting medical supplies at this time.  For the most up-to-date information, please visit Protect TX Fragile Kids.

If you have questions, please visit Protect TX Fragile Kids, or email us 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