Posts in On Capitol Hill
The Power of Medicaid (by Jeneva and Robert Stone)

 The following is a transcript of remarks  given at a Press Conference in the U.S. Capitol, hosted by members of the Senate and Protect Our Care, at the closing of Medicaid Awareness Month on April 30, 2019

 

I’m Jeneva Stone from Maryland and I’m a member of Little Lobbyists, a group of families advocating for children with complex medical needs and disabilities.

This is my son Rob. Rob recently graduated from high school, and he has plans to be an artist, writer and disability advocate. Rob enjoys baseball, movies and museums. He’s a huge Game of Thrones fan.

Rob also has a rare disease, and he’s one of 35 million Americans for whom Medicaid has been a lifesaver. Before Rob qualified for a Medicaid waiver in 2012, our family had been through 6 different private insurers—trying to avoid hitting annual and lifetime coverage caps—and over a quarter of a million dollars in out-of-pocket medical expenses.

Unlike private insurance, Medicaid is designed for people with disabilities: It provides all 30 boxes of medical supplies Rob needs every month. His specialty medications are covered. His therapies are covered.

I don’t have to fight with an insurance company to get Rob the customized wheelchair he needs, which retails for $8,000 to $10,000 without Medicaid.

Why does Rob need that wheelchair? So he can get out in his community, just like his peers—going to Orioles games and the movies, and even having a beer now that he’s old enough. Rob’s Medicaid coverage provides home nursing and personal attendants so he can live in his community, where he belongs, with supportive neighbors and friends.

Because of Medicaid, Rob can live at home with his family, rather than in a nursing home where no 21-year-old young man belongs. Rob’s sister will be home from college next month, and he’s looking forward to hanging out with her again.

Before Medicaid, medical bankruptcy was a real possibility for my family: Nothing prepares you for the staggering costs of raising a child with complex medical needs. Savings, family money, even selling your home cannot cover two decades worth of multiple specialists, medical equipment, prescriptions, hospitalizations and surgeries, therapies, home modifications, and home nursing.

Survive and thrive. That’s what Medicaid gave Rob, and that’s what Little Lobbyists wants for all children with complex medical needs and disabilities—the chance to grow up to be healthy adults. Rob, now 21 years old, is living proof of the power of Medicaid.

 

The author Jeneva and her son, Robert. 

The author Jeneva and her son, Robert. 

The Disability Integration Act

Little Lobbyists know our children with complex medical needs and disabilities will grow up to be adults with complex medical needs and disabilities. This is why legislation like the Disability Integration Act, which seeks to end institutional bias and secure everyone’s right to choose to live in their communities instead of an institution - regardless of level of need - is so critical to protecting the civil rights our children deserve.

This year, on Martin Luther King Jr.s birthday, the Little Lobbyists were invited to speak at the re-introduction of the Disability Integration Act with members of ADAPT, NCIL, other disability rights advocates, and members of Congress. The following text is from Erin Gabriel’s speech, mom of Little Lobbyists Abby, Bridget, and Collin. Erin, who lives in Pennsylvania, was also asked to introduce Senator Bob Casey (PA) by the Senator himself before he gave his remarks in support of this bill, which he called and important piece of civil rights legislation befitting the legacy of Martin Luther King Jr..


Image Description: Elena Hung, Erin Gabriel, and Little Lobbyists Xiomara and Abby at the podium during the DIA day reintroduction program. They are accompanied by an ASL interpreter.

Image Description: Elena Hung, Erin Gabriel, and Little Lobbyists Xiomara and Abby at the podium during the DIA day reintroduction program. They are accompanied by an ASL interpreter.

I am the lucky mother of three beautifully autistic children, Collin, Bridget and Abby. Abby is my youngest. She is 9 years old.

In addition to being autistic, Abby is also Deaf-blind, nonverbal, uses a wheelchair and has a long list of medical symptoms that go along with her genetic diagnosis. She has a rare, progressive and degenerative syndrome that we are still trying to learn more about. Medically, Abby has had to go through a lot.

That said, she, in so many ways, is a story of everything that can go right with the system. Because of where we live in Pennsylvania, her hearing loss was found at birth and she immediately qualified for Early Intervention services as well as a home and community based Medicaid waiver for children with disabilities-Pennsylvania’s version of the Katie Beckett Waiver. We have been able to find therapies and treatments that have helped her – all while living at home with her family.

Abby’s syndrome is progressive. She will eventually lose much of what she has gained. Her seizures will return and intensify.  And as her disease progresses, we know she will need nursing care at home to help with her daily needs. With the waiver, we know that when the time comes, she will be able to access the care she needs until she turns 21.  

But our waiver is not available to every child like Abby. It varies significantly state by state. And without that waiver, insurance companies use an institutional bias and won’t provide the home care so many of our children need. That means they will pay for care in a nursing home, but not in your own home. It’s part of why we live 600 miles away from our family- because Abby’s access to care literally depends on her zip code.

And when she reaches adulthood, that waiver will go away. Her services will stop, including any therapy and nursing care she has. She will be put on a wait list that extends for years. Her health will continue to decline during that time, while she waits.

Right now, Abby is growing up in her community, with her family and friends. She goes everywhere with us. She enjoys shopping, going to movies, even going to some political events here and there. She travels. She goes swimming at our local lake. She snuggles with her dog at home. She rides all the rides at Idlewild (our local amusement park). She smiles and laughs and brightens the day of so many people around her. She LIVES her life with more spark than most people I know. She deserves to have that freedom to keep living in her community. To get a job if she can. To keep going out with her friends and to travel if she wants to.  

She deserves to have that choice and not be relegated to a nursing home at age 22 because of the services she will require. She deserves to actually live and not just exist. Abby and people like her deserve the right to that choice regardless of which state they happen to live in. This is why the Disability Integration Act is so important for our family, for Abby and for people like her.

The National Centers for Independent Living (NCIL) held an art contest last summer. My daughter, Bridget, entered. The contest was “What the DIA Means to Me.” After talking about it for a few minutes, Bridget knew exactly what it would mean to her. She drew a picture of herself and her little sister in a wheelchair with a nurse being shown to their table at a restaurant. Because, as she explained to me, “The DIA would mean I could visit Abby at her house and we could go to a restaurant or anywhere we want instead of being stuck in a boring nursing home.”  

The DIA means families can stay together and people with disabilities can participate in their communities and LIVE their lives. Just like every other American. — Erin Gabriel

Image Description: Abby’s sister Bridget with her award from NCIL and her award-winning artwork about “What the DIA Means to Me.”

Image Description: Abby’s sister Bridget with her award from NCIL and her award-winning artwork about “What the DIA Means to Me.”



Speaker of the House (by Stacy Staggs)

On January 3, 2019, the 116th Congress was sworn in, with Democratic party leadership.  At 4am I had yet to close my eyes, even though I had a full day ahead of me. I couldn’t sleep because January 3rd was the day we had worked for two years to reach.  The day the Nancy Pelosi regained reclaimed the gave and became Speaker of the House. This was the day that ended the Republican majority in all three branches of Federal Government.  We made it. Checks and balances have been brought back to the US Government.

Americans with pre-existing conditions, families with medically complex children and adults, people who are chronically ill and in need of sufficient healthcare, all relaxed just a bit, knowing that the Affordable Care Act (ACA) will not be repealed by legislation for now.  I was one of them. My daughter Emma, a former 28 week micro-preemie twin along with her sister Sara, relies on the protections against pre-existing condition exclusions and the lifetime coverage limits the ACA put a stop to…

When Speaker Pelosi reclaimed her gavel I breathed a little easier knowing that the Republican party agenda to repeal the ACA  without a replacement cannot pass while the Democratic party leads one of the chambers of Congress. We saw that the GOP could not repeal the ACA even  when Republicans held the majority in both chambers, but the devastating threat constantly loomed. With Democrats in the majority of the House, the threat has been somewhat neutralized for now.  Instead of being on the defensive, we can resume and expand our plans to improve the framework and execution of the ACA instead of fighting off its demise.

I have never, in my 40+ years of life, followed politics so closely as I have over the past two years.  I have never been so personally impacted or attacked by members of my own government and my fellow citizens who support an agenda that includes removing healthcare and Medicaid supports for millions of families, including my own.  That is why I joined forces with the Little Lobbyists. I could not sit and remain silent as Emma’s right to access healthcare was attacked, belittled and dismissed as unimportant. My daughter is not expendable. None of our children should be thought of as a budget line item.

I was astounded when Speaker Pelosi shared credit for the Democrat’s victory with our Little Lobbyists,” in her first speech as Speaker to House Members and the American public. When she credited part of the progress we have made during these scary and tumultuous times to the Little Lobbyists it hit a lot of us like a lightning bolt!  It served as validation that the innumerable hours, late nights at our kitchen tables, butterflies as we approach the microphone to speak, or write to share stories about our families have, in fact, made a difference. In those early morning hours, between enteral tube feeds, checking ventilator settings, covering for another missed nursing shift, emergency room visits and lengthy inpatient stays, we realized that the time we have given in service of the Little Lobbyists goals have been an important part of the fight to stem the erosion of healthcare in our country.

We now have allies leading the US House of Representatives, and no greater champion than Speaker Pelosi. January 3rd was the day the landscape has changed. It was the day we have had circled on our calendars since before the midterm elections.  The day everything changed.

Stacy’s daughter Emma is the reason she cannot sit and stay silent.

Stacy’s daughter Emma is the reason she cannot sit and stay silent.

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!





 

 

Little Lobbyists’ 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