Congresswoman Jennifer Wexton of Virginia will retire from Congress at the end of the year due to her own health concerns. For more on Wexton’s life and legacy, read Sara Luterman’s article in The 19th.

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Congresswoman Wexton (l) stands next to Tasha Nelson (r) in Wexton’s congressional office. Weston has long, thick blonde hair, while Nelson’s is pulled back off her face & she wears glasses. Each is dressed in clothes made from deep blue fabric.

In the world of advocacy and public service, there are rare individuals who transcend their titles to become true champions for the people they serve. Congresswoman Jennifer Wexton is one of those rare individuals. Her unwavering dedication to healthcare, children with complex medical needs and disabilities, and families like mine has left an indelible mark, and it’s an honor to share just a glimpse of the profound impact she has made.

My journey with Congresswoman Wexton began in an unforgettable moment. I had written an article for New York Magazine about the Affordable Care Act’s (ACA) importance for children like my son Jack, who lives with cystic fibrosis, and why I planned to vote for her in the upcoming election. That article caught the attention of President Obama, who shared it on Twitter. Soon after, I was invited to appear on The Last Word with Lawrence O’Donnell, where I first met Congresswoman Wexton.

Even before she officially took office, she made me two promises: First, that Little Lobbyists—an organization I proudly represent advocating for children with complex medical needs and disabilities—would be her very first meeting in Congress. Second, that she would fight tirelessly for healthcare and children like Jack.

Val Watkins (who organized the meeting) poses with Congresswoman Wexton as she gives her a gift from LL: a framed photo collage gifted to her by the group with Little Lobbyists logo and photos of the LL children she met with early on. Watkins is wearing a deep blue suit with a red shirt, and Wexton wears a deep blue suit.

True to her word, Congresswoman Wexton met with us as one of her first official acts. But it wasn’t just a meeting—it was a moment that set the tone for her tenure. She didn’t approach us as a politician checking a box; she listened with empathy and urgency, forging a connection rooted in shared values and a commitment to building a more inclusive and compassionate future.

Throughout her career, Congresswoman Wexton championed protections for pre-existing conditions and the ACA, ensuring that families like mine could access the care we needed. She amplified our voices, sharing our stories with fellow legislators and on the House floor.

Her advocacy extended beyond the halls of Congress. She hosted events like the “Congressional Playdate” at Clemyjontri Park, a space designed for children with disabilities to play and thrive, where our elected leaders could see what accessibility means. Another memorable event Congresswoman Wexton hosted was called Storytime with Congress. She and other leaders read children’s stories featuring disabled children. ASL interpreters were present, snacks were provided and a beautiful room in the Library of Congress was turned into a magical accessible experience for our children. After the stories were shared, she sat in the room with us to hear our concerns and hopes for policies affecting our kids. 

Congresswoman Wexton (c) poses with Aire (l) and Jack (r). Both are now teenagers, but met Wexton when they were young children. Are wears blue glasses and a charcoal suit. Jack has on a black facemask, glasses, and his huge mop of blond curls hang down over his forehead.

She joined us in real-life moments that reflected the reality of parenting children with complex medical needs: mothers suctioning trachs, children taking medications to eat or breathe, and kids happily stimming in spaces where they felt safe.

She made herself not only available but accessible. She met us where we were, ensuring our children felt included and valued. She witnessed the complexities of our lives and let those experiences inform her work.

As Jack grew, so did her understanding of the evolving needs of children like him. When we first met, Jack was 7, and his annual medication costs were approximately $100,000. Today, at 13, his medications cost over $500,000 a year—lifesaving treatments that allow him to eat and breathe. To see Jack, with his mop of curly hair and fascination with the science of weather, you might never guess his body requires so much assistance. But Congresswoman Wexton took the time to see him, to know him, and to fight for policies that ensure children like him can thrive.

It feels deeply fitting that Little Lobbyists was her final meeting in Congress. From her first promise to her final act, Congresswoman Wexton stood steadfast in her dedication to families and children like mine.

Her legacy lives on in the policies she shaped, the lives she touched, and the hope she inspired. Congresswoman Wexton, thank you for keeping your promises, for showing us what compassionate leadership looks like, and for making a lasting difference in the lives of so many.

We are forever grateful.

Congresswoman Wexton (c) poses with the group from Little Lobbyists: two women and one young man (l) and the same on the right. Little Lobbyists pins are visible & Wexton holds the framed photo collage.

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Tasha Nelson and her son Jack are members of Little Lobbyists.

The Hatcher Family [image description: A mom and dad along with their two children, son and daughter, pose outside the U.S. Capitol building on a strip of green grass. The family is white. They are wearing outfits that feature the colors navy blue and white. The father and son wear glasses. The mother and daughter have long blond hair. They are accompanied by a large dog with white curly fur.]

In 2017, people with disabilities, including kids, showed up to defend the Affordable Care Act, the law that protects everyone’s access to healthcare. Defending that law, which gave our kids with complex medical needs and disabilities the right to access the health care they need to survive and thrive in their homes and communities, was the catalyst that brought the families of Little Lobbyists together. Five years later it finally feels safe to say that we succeeded.

Fun fact: the Little Lobbyists logo was designed late at night while we were waiting for the Senate vote that saved the ACA in the first year of the Trump Administration. 

I’m Simon’s mom, the designer of the Little Lobbyists logo and our Communications Director. Along with my husband, Brian (a.k.a. Simon’s dad), I run a small design firm outside of Baltimore, where we’re raising our two amazing kids. Our daughter Olivia is a freshman at Johns Hopkins, double-majoring in pre-med and public health (the family’s other business). Simon is almost 16, and he loves to play Mario Kart, practice the drums, and has the best laugh you’ve ever heard. Simon also has hydrocephalus, cerebral palsy, epilepsy, autism, vision and hearing loss, a unique genetic disorder, and physical and cognitive disabilities. 

You could say he has a few “pre-existing conditions.” 

In fact, everyone in my family has pre-existing conditions - from my husband’s high blood pressure to my asthma.  Olivia doesn’t even have a spleen! But that's a story for another time. 

My family needs health care, and we need the protections of the Affordable Care Act (ACA) to ensure we can access that health care. Simon recently became eligible for a Medicaid waiver thanks to the ACA’s Medicaid expansion. Having Home and Community-Based Services through Medicaid has been life-changing for him. 

Because Brian and I are small business owners, the only way the two of us and Olivia can access health insurance is through the ACA’s exchanges. Every year, during the open enrollment period, we choose the plan that works best for our family. Thanks to the ACA’s guaranteed coverage of essential benefits, the plans are all good quality. 

But I can’t say they’ve always been affordable. 

As middle-class business owners, my family has never qualified for any subsidies. Every month I put our insurance payment of over $700 on our credit card. Most months, I can pay it off. But sometimes – especially during the height of the pandemic when business came to a standstill – I couldn’t. Those months, we’d accrue debt with interest, and I’d accrue a bit more anxiety.

When Congress passed the American Rescue Plan (ARP) in April of 2021, I was absolutely thrilled that it did so much to improve our country’s access to health care. 

Laura Hatcher [image description: A black & white photo of a white woman with sunglasses posing in a park with the U.S. Capitol building behind her. She wears a long-sleeved dark-colored t-shirt with the words “Health Care Voter.”]

The ARP increased vital funding for Medicaid Home and Community-Based Services, created targeted subsidies to help people in Medicaid non-expansion states access health coverage for the first time, and opened a special enrollment period to help more families get health care during the pandemic. It also expanded subsidies for families, like mine, who had never before qualified for any support. 

My health insurance now costs $600 less a month. That’s $7,200 I didn’t have to put on my credit card this year. That is affordable insurance. That is access to the health care my family needs. That is peace of mind.

In fact, the ACA improvements under the ARP have worked so well that a record number of people signed up for health coverage in 2021. Millions more families can now see a doctor when they are sick. They can get preventative screenings to stay healthy. Access to health care means lives improved, lives saved.

Unfortunately, right now, this increased access to health care and peace of mind is only temporary. The enhanced ACA subsidies, Medicaid funding, and extended enrollment are due to expire at the end of 2022. Millions of people may also lose their health care when the State of Emergency ends and states are once again allowed to purge Medicaid rolls. 

We simply cannot let that happen. 

Maintaining the health care protections and coverage provided by the Affordable Care Act against 5 years of constant, intense, political assault was a Herculean feat, but it isn’t enough. 

The expanded access and affordability temporarily created by the American Rescue Plan isn’t enough, either. 

After five years of fear and instability created by Republican-led threats to our basic right to access to health care, and after two years  of a deadly global pandemic that disproportionately impacted marginalized communities (including people of color and those with disabilities),  it’s abundantly clear that our nation’s ability to survive, and hopefully thrive, is not possible without EVERYONE having access to health care. 

It is also clear that protecting and improving our access to health care is possible when we prioritize it, as we did just one year ago. 

A better, healthier future is within our reach – but we must once again show up to make that happen. Tell your legislators they must not allow us to go backward. Vote for candidates who will move our country forward.

The ACA was a start. Now it is time to finish the work. Health care is a human right.

Angela Carpenter Gildner [image description: a white-appearing woman with blond hair poses in a gray “Health Care Voter” t-shirt with a red cushion in the background]

On Thursday, June 17, 2021, the U.S. Supreme Court upheld the Affordable Care Act (ACA), and I breathed a huge sigh of relief. I've lost count of how many times I have metaphorically held my breath while waiting to find out if the ACA, which ensures my children and I have health insurance, will remain law.  

The Supreme Court's decision to uphold the ACA means my family of four will continue to be insured. It protects three of us from being denied coverage due to pre-existing conditions. It means I can finish my Master’s in Social Work. If the Supreme Court had not upheld the ACA, I would have had to weigh the possibility of either becoming uninsured while I finished my last classes and field work, or dropping out to find a full-time job with benefits. 

Getting my social work degree is the long-delayed answer to a professional calling to a helping profession. A calling I ignored for over a decade because good health benefits, so critical for my family, kept me tied to my old job.

In 2004, a few months before our wedding, my husband, who is a musician, voiceover artist, and audio engineer, had the opportunity to fulfill a professional dream by purchasing a small recording studio. With that purchase he left the security of a full-time position at a disability advocacy organization. I agreed my job would, for the foreseeable future, provide our family's health insurance. 

Graham and Margot [image description: a white-appearing brother and sister, each wearing t-shirt and shorts pose knee-deep in a lake with mountains in the distance on a sunny day]

That family expanded from two to four when we welcomed children—a boy, Graham, in 2006 and a girl, Margot, in 2009. During the first five years of Graham’s life, our employer-provided insurance changed carriers four times. Twice to plans not accepted by our pediatrician. Long live the myth employer-provided health care plans mean your preferred doctors will be covered year after year. 

As a mother, I wrestled with the desire to have more time with my children and the need to work full-time to maintain access to health insurance. This emotional tug-of-war worsened as it became apparent my son was not neurotypical, and my daughter, at three months old, started needing nebulizer breathing treatments several times a day. 

By the time Graham finished elementary school, he had a list of pre-existing conditions. I was grateful for the protections of the ACA—he couldn’t be dropped from our plan or max out his lifetime coverage. Thankfully, as she grew Margot's asthma improved. By the time she started elementary school she needed daily treatment only following a respiratory illness. Unfortunately, my asthma worsened significantly, necessitating two different steroid inhalers twice daily to keep it in check. 

In 2015, I added cancer to our family list of pre-existing conditions. Thankfully, my breast cancer was caught early and treated with a lumpectomy and radiation. I continue to be screened every six months, alternating between a 3D mammogram and an MRI, to ensure if the cancer reoccurs it will be caught early. 

Cancer made me hyper-aware that life is too short to waste time at a job that was no longer fulfilling. Early in 2017, I took a leap of faith and left my job of 16 years. After a couple months on COBRA, our family signed up for insurance via the DC Health Exchange, which wouldn't exist without the ACA.

By January 2018, Graham had been diagnosed as Autistic, with comorbid depression and anxiety. We had spent months, now years, working with a psychologist and a psychiatrist to find the right balance of weekly therapy and medications to ensure the playful, happy Graham who loves hugs stays present, and the angry, anxiety specter is kept at bay.

 My son will tell you, if we hadn't gotten him help when we did, he might not be here today.

In the fall of 2018, I officially entered graduate school part-time pursuing a Master's Degree in Social Work. My experiences trying to find treatment for my son, and doing citizen advocacy with Little Lobbyists to protect the ACA highly influenced this choice.

Unfortunately, as Graham's mental health stabilized, Margot's deteriorated. Margot now also has a list of pre-existing conditions including anxiety, depression, and ADHD.

Getting my children the care they need is made exponentially more difficult and more expensive by the continued disparity between reimbursement rates for behavioral health care compared to physical health care. The shortage of mental health providers who see children and adolescents means finding one taking new patients is difficult and usually involves months on a waiting list before an appointment. Finding a provider who takes insurance is nearly impossible. 

Our family's annual therapy tab reminds me the ACA still desperately needs improvement. Despite this, I am grateful for the ACA every day. Grateful for the security it provides to my family. In spite of our list of pre-existing conditions, we cannot be denied health insurance.

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Angela Carpenter Gildner lives in Washington, D.C. with her husband, children, and an assortment of pets. After graduating with her MSW in May 2022, she plans to practice clinical social work with children and adolescents, and continue her advocacy for the health of our planet and the right of healthcare for all.

On June 17, 2021, the U.S. Supreme Court issued a decision on a group of cases from several states that challenged the constitutionality of the Affordable Care Act (ACA). The Supreme Court ruled 7-2 that the plaintiffs lacked standing to challenge the health care law. This was the third challenge to the ACA rejected by the Court, and a huge relief for many families. Peter Witzler, a member of Little Lobbyists, reflects on this momentous day.

Peter Witzler and his family. [image description: A white-appearing father, mother and two young boys pose with their black dog in a wooded area near a stream. All are smiling.]

Today felt like an immense weight had been lifted from my shoulders. Like a nagging voice in my head had finally been silenced. Like our family could continue to dream, plan, love, and laugh without making a series of impossible choices linking our family’s finances to the well-being of our son Jackson: Could we afford to do what's medically best for Jackson? What would give him the best chance at a healthy, independent life? Without bankrupting our family?

That's because today, the Supreme Court once again affirmed that the Affordable Care Act and Patient Protection and Affordability Act (the ACA) is the law of the land. An effort led by Republican Attorneys General to overturn a key provision, the ACA’s protection for pre-existing conditions, has been defeated. 

Jackson was born with a pre-existing condition. Despite excellent prenatal care, his extremely rare form of Spina Bifida went undetected. When he was born, a hush fell across the room as doctors, nurses, his mom Lisa and I saw a mass the size of a softball on his lower back. After being transferred to Children's National Medical Center, we began the first of several long stays in the neonatal intensive care unit (NICU). During his first six months of life, Jackson totalled four months in hospitals, three brain surgeries, and a whopping multi-million dollars in medical bills. Thanks to the protections of the ACA that were confirmed again today, as well as my union-negotiated health insurance, we were able to do what was best for Jackson. 

Peter and Lisa with Jackson just before his first surgery at three-and-a-half months. [image description: Two white-appearing parents hold their infant son, who wears a Superman cape.]

The ACA is something we constantly benefit from. We made investments in care, therapies, treatment, and supports for Jackson early on in his life. When he started turning blue and gasping for air, we were able to seek specialists, a diagnosis, and learn to use a feeding tube so he could continue to grow strong. He’s had two additional surgeries, and we know there are more in his future to correct his severe scoliosis. We can plan for this and more with the security of knowing he cannot be denied care for simply being born. 

These significant investments in his health early on have made him into a mischievous, independent six-year-old who loves getting into trouble with his big brother Teddy. These early investments mean he is on track for independence, lower intensity supports, and fewer healthcare costs as he grows older and stronger.

As a fourth-generation union member, my job gave my family the means of wages, job security, and benefits to achieve the American Dream. But even collective bargaining was unable to protect working families from an insurance executive who wanted another yacht. When Jackson was born, we could have been knocked right off track. Instead, we relied on the protections of the ACA to keep moving. Instead, we’re still working toward our American Dream.

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Peter Witzler lives in Gaithersburg, Maryland, with his wife Lisa, his two kids, Teddy (9) and Jackson (6), and their pandemic-adopted dog Gabby. He enjoys sharing his love of nature and food with his family, and enjoys brewing a new batch of beer with the East Rockville Brewers Guild.  

I first heard Sister Simone speak at the Women’s March in Washington D.C. on January 21, 2017. Like many people on that unseasonably warm winter day, I’d never been to a protest march before. I was unsure what to expect, and uncertain if I belonged. 

Sister SImone on the jumbotron at the Women’s March. Photo from networklobby.org

As I made my way toward the Capitol I joined a growing sea of pink hats and smiling faces. People carried signs quoting Mother Teresa and Dr. King, little girls in kitten-eared beanies bobbed above the crowd upon their mother’s shoulders, and members of the local Black church offered marchers water, granola bars, and words of encouragement as we passed.

By the time I reached the edge of the Mall my nerves had dissipated. The crowd slowed to a stop, and the clear voice of a smiling woman with a neat gray bob rang out from the nearest stage. 

As I listened I realized she was quoting scripture:

“... they say that we were gathered in one place - frightened and afraid … afraid to go out … and then a mighty wind came. A mighty wind that stirred the hearts and lifted the courage and let people know we’re not alone. We’re together. We’re together regardless of our faith, regardless of our color, regardless of who we define as our neighbor. We are all neighbors to each other and that is the deep truth our nation was founded on. We are our sister's keepers. We are our brother’s keepers. It is that truth that will help us to mend the gaps in our society.”

In that moment, I was transported back to my all-girls Catholic high school days in Baltimore City, where the Sisters of Mercy filled our heads and hearts with the knowledge that we were put on this earth to make it better. I was shocked, yet equally unsurprised, to learn the speaker was a Catholic sister – once again calling me to be a happy warrior in the mission for social justice. 

I knew I was right where I belonged.

That day, Sister Simone gave me my marching orders and I’ve been following them ever since. In our quest to make this world a better place through the work of Little Lobbyists, Sister Simone has been a constant support and source of inspiration. 

Sister Simone stands to my right, next to Elena Hung and Ady Barkan, as I speak at a press conference in the Capitol at the invitation of then-Leader Nancy Pelosi.

Later that same year, in December 2017, Sister Simone stood by my side as I spoke at my first “big” press conference with then-Leader Nancy Pelosi. Sister Simone nodded in quiet encouragement as I asked Congress to protect our children with complex medical needs and disabilities. She later invited us to her office at Network Lobby, and asked us to teach her organization about our children and what they needed. Over the next four years, we found there was always room for our families on Network Lobby’s national “Nuns on the Bus” tours, and at stop after stop Sister Simone lifted our families’ voices on her platform. She lent us her strength and amplified our message, adopting our cause as one of her own.

This month, Sr. Simone is retiring as Executive Director of Network Lobby. Though I know we Little Lobbyists and so many others will miss her leadership, I also know she will always be with us. I can think of no better way to honor her than by recommitting ourselves to following her charge –  

“So my friends, can we commit in this moment to exercise joy, to claim our passion, to have curiosity about our neighbors and then, share it around. Because if we each do our part, we the people will triumph, we the people are what our nation needs, and we the people will make the difference. Let’s do it together.”

Thank you, Sister Simone. 

Click here to listen to Sister Simone’s full speech at the Women’s March in Washington D.C., January 21, 2017: https://youtu.be/wcrbgSKF80U

Elena Hung and Sister Simone

Elena and Sister Simone hug at a Nuns on the Bus tour stop on a sunny day with a blue sky and palm trees in the background.

Nuns on the Bus Tour Stop

Elena stands at a wood podium with members of the Nuns on the Bus tour stop behind her and Sister Simone to her right.

Sister Simone and Abby

Sister Simone hugs Little Lobbyists Abby who is seated in a wheelchair. The Nuns on the Bus tour bus and a small crowd of people stand behind them.

Erin Gabriel speaks at the Nuns on the Bus tour

Erin holds the mic as she speaks at the Nuns on the Bus tour stop in Pennsylvania, her daughter Abby and members of the Nuns on the Bus group are beside her and the tour bus is behind her.

Angela and Myka at the Nuns on the Bus tour stop in CA

Little Lobbyists Myka and her mom Angela speak at the Nuns on the Bus tour stop in California with Sister SImone and members of the Nuns on the Bus tour group.

Nuns on the Bus Tax Justice Truth Tour

Little Lobbyists Simon, and his service dog Tigger are at the Nuns on the Bus Tax Justice Truth Tour. Sister Simone, Simon’s mom Laura Hatcher, and his Aunt Tess Veloso stand behind him.

December 2017, Leader Pelosi's office

From left to right: Little Lobbyists Simon, his Dad Brian Hatcher, Sister Simone, Laura Hatcher, and Ady Barkan in then-Leader Pelosi’s office before a press conference in the Capitol.

Little Lobbyists Moms and Sister Simone

Little Lobbyists moms Erin Gabriel, Tasha Nelson, Elena Hung, and Stacy Staggs stand with Sister Simone for a quick selfie in the Capitol

Rob Stone, a member of Little Lobbyists, at a physician appointment last year. [image description: A young man sits in a wheelchair, advocacy buttons decorating his vest & headrest. He wears an aqua shirt and has a tracheostomy tube visible. Behind him are an examining table and medical supply cabinets.]

The Affordable Care Act (ACA) appears here to stay--that’s the good news! It has been the subject of multiple lawsuits and dozens of bills that have attempted to overturn it. On December 10, the U.S. Supreme Court heard oral arguments in the latest effort to do away with this crucial piece of legislation, yet court-watchers believe the justices signaled a willingness to let the law stand. We can breathe a small sigh of relief, for the moment.

If you need health insurance, keep in mind that ACA open enrollment has been extended to August 15! You can sign up or renew your plan on Healthcare.gov today! According to the Urban Institute, the average federal subsidy for individuals who purchase their ACA plans through state marketplaces is $5,500, and the recently passed American Rescue Act has extended subsidies EVEN FURTHER, so check your eligibility for subsidies - even if you checked earlier this year! Need advice on selecting a plan? Check out these helpful tips. 

Why does the ACA matter? The law has been the victim of a decade-long misinformation campaign, but it provides tons of benefits for Americans. Most people know these basic safeguards, but there are more: protection for people with pre-existing conditions, no caps on annual or lifetime costs, and the ability to keep your children on your plan through the age of 26. 

These benefits apply not only to ACA marketplace plans, but to ALL insurance plans issued in the U.S. The ACA has been a game-changer as insurance reform.

The ACA also mandates 10 Essential Benefits to be covered by all health care plans issued in the U.S., which include the ACA marketplace, private, government, and employer-based plans. If the ACA were ever overturned, many insurers would opt out of these benefits:

• Ambulatory patient services (outpatient care you get without being admitted to a hospital)

• Emergency services

• Hospitalization (like surgery and overnight stays)

• Pregnancy, maternity, and newborn care (both before and after birth)

• Mental health and substance use disorder services, including behavioral health treatment (this includes counseling and psychotherapy)

• Prescription drugs

• Rehabilitative and habilitative services and devices (services and devices to help people with injuries, disabilities, or chronic conditions gain or recover mental and physical skills)

• Laboratory services

• Preventive and wellness services and chronic disease management

• Pediatric services, including oral and vision care 

When the ACA was passed in 2010, it provided funds for state Medicaid expansion. However, many states refused those funds, and, thereby, hurt their own citizens. In those states that passed Medicaid expansion, the ACA helps both rural and urban hospitals stay open and maintain quality care standards. When people are struggling to make ends meet, they can’t pay their medical bills. More people eligible for Medicaid means more dollars to support the compassionate missions of hospital emergency rooms, where no one is turned away. 

In addition, Medicaid expansion under the ACA pays for school nursing for all children, as well as individualized nursing for children with complex medical needs and disabilities, and the physical, occupational, and speech therapies children require. If Medicaid is cut, your child’s school nurse could disappear. 

This holiday season, let’s all be thankful that the ACA has withstood so much in its decade of existence and that, under the incoming Biden Administration, its protections are strengthened, ensuring more Americans have access to affordable, quality health insurance. 

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Jeneva Stone is the Little Lobbyists’ blog manager.

Laura Leeman and her son Vic. [image description: Two people pose in front of a black & white background printed with the words “Avant Chamber Ballet.” A woman with short dark hair & a yellow print shirt stands next to a young man with short dark hair and glasses who sits in a wheelchair. The woman places her hand lovingly on the back of the young man’s head.]

We were in the middle of my son’s homebound Webex class when a sound stimulus triggered a seizure. Vic’s teacher could only watch as I suctioned him, pumped up his supplemental oxygen to four liters, leaned him back, and let him fall asleep. That's how a number of our classes end. Just prior to this, he was smiling and ready to participate in class. 

Vic is currently 15 years old, and in his first year of high school. He has always been a very happy guy. His infectious laugh brings smiles to anyone near him. He loves all types of music and being outdoors, especially at the beach where he used to feel the wind on his face. Vic’s uncontrolled seizures went largely undiagnosed until last year, when he was found to have a rare genetic syndrome linked to epilepsy called GRIN2A. Also, we discovered a year ago that Victor’s lymphatic system is breaking down. While we’ve learned more about Victor’s medical health, having a genetic diagnosis does not give us a complete picture of the reason for his many seizures. 

What I do know is that Victor’s seizures are a pre-existing medical condition. As an infant and into early childhood, Vic had up to 50 or more seizures per day. Today he averages one to five. As he's aging, his daily seizures are more intense, but lower in number. Vic takes three costly seizure medications per day along with many other medical interventions for all of his medical conditions.

While Vic’s medical journey began before the Affordable Care Act (ACA) was passed, I know how important the ACA is and I know that I am not fighting with insurance companies the same way I did pre-ACA. To be direct--Vic is alive today because of the many benefits the ACA provides: Victor may remain on our health plan until the age of 26 with no lifetime limit on the high costs of his medical care. 

It is not an overstatement that the ACA has been pivotal in Victor's care as it has extended his life, living with our family in our loving home. If it were not for the ACA, there is no question that our lives would be very different!  At age three, prior to the ACA’s passage, Vic was nearing his lifetime insurance limit of $2 million. I remember opening and worrying about every bill and reading each insurance explanation of benefits (EOB) form. The words, "Lifetime limit total is now X," were printed at the bottom of each EOB until the ACA passed and those words disappeared along with my financial worries.

Vic's 105-day hospital admission one year ago included medical travel to have surgeries out-of-state, as well as a return admission back to Texas. These bills were well over $2 million and I have the EOBs to prove it!

I cannot fathom to think whether Vic would be alive today if we didn't have ACA protections. These prevent Vic from being denied coverage for his many expensive medications, medical treatments, specialist appointments, hospital admissions, therapies, home health equipment (feeding supplies, syringes, tubing, and IV pumps, etc.), and his durable medical equipment (wheelchair, suction machines, Hoyer lift, hospital bed, cough assist, etc.).

Laura Leeman stands next to Vic (who is in his bed) & speaks with former congressman Beto O’Rourke. [image description: A woman with a “Health Care Voter” t-shirt faces a a man in a suit and tie. They are talking. Next to them, a young disabled man lies in a bed, attached to several pieces of medical equipment. On the walls are mounted toy trains, certificates and railroad memorabilia.]

Through all of this, I know that we are not alone. Millions of families are just like us and have the same worries as we do while the Supreme Court considers the November 10, 2020, ACA oral arguments, a case that will not be decided until April or May of 2021.

As for now? November is Epilepsy Awareness Month! Please join me in spreading both epilepsy awareness and positive vibes as millions of Americans remain in limbo, hoping to keep the health care they have. As the new Congress considers what’s at stake for our kids, we hope they will improve the ACA  by making it more affordable and providing more coverage to every American. Health coverage is essential to sustaining life without worrying  about or facing the high costs of medical bills.

Some Quick Epilepsy Facts 

• 65 million people around the world have epilepsy.

• 3.4 million people in the U.S. have epilepsy.

• 470,000 U.S. children have epilepsy.

• 1 in 26 people in the U.S. will develop epilepsy at some point in their lifetime.

• Between 4 and 10 of every 1,000 people on earth live with active seizures at any one time.

• 150,000 new cases of epilepsy are diagnosed in the U.S. each year.

• One-third of people with epilepsy live with uncontrollable seizures because no available treatment works for them.

• 6 of 10 people have no known cause for their epilepsy.

No parent should have to worry about medical costs when their child is faced with multiple medical conditions---Life is stressful enough!

Please take time to learn more about Epilepsy Awareness Month, GRIN2A, and what may happen next with the ACA. 

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Laura Leeman is a stay-at-home mother of two boys. She and her family live in North Texas. Laura is guided by her older son's medical journey, which began when he was 12 days old. Laura has been a speaker at several events, including a livestream in her home with former congressman Beto O'Rourke in 2017, during which she shared her story and educated him and others on health care concerns and disability rights. She has earned Bachelor's and Master's degrees, and is a recent graduate of Texas Partners In Policymaking.

Jamie Davis Smith speaks in front of the Supreme Court. [image description: A woman wearing a face mask stands in front of a microphone. Protestors carrying signs supportive of health care stand in a line to her left & right. In the background is the U.S. Supreme Court, bright white marble against a flawless blue sky.]

My daughter Claire is 14 and loves ice cream, being in water, and has spent much of the pandemic snuggled on the couch with her three younger siblings. Claire spent the first few weeks of her life in the Neonatal Intensive Care Unit receiving the best medical care available. There we learned that nearly every part of Claire’s body was formed differently than most. She is missing parts of her brain and her heart is not in the typical place. She has epilepsy, asthma and intellectual disabilities. 

Like Amy Coney Barrett’s son Benjamin, who was born with Down Syndrome, Claire was born with pre-existing conditions. But Claire was born in 2006, four years before the Affordable Care Act (ACA) was passed. This meant that every test she had, every procedure, every hospital stay, every doctor’s appointment, every therapy visit, every canister of oxygen was a tick mark against her annual and lifetime caps on care. Every step I took to help Claire stay healthy felt like a step closer to the day she would not be insurable – at any cost – because of the way she was born.

Because Justice Barrett’s son was born after the ACA passed, she never had to worry that her child would suffer (or worse) because his health insurance benefits ran out. And she never experienced the relief that came to parents like me when the ACA passed, and we could tuck our children in at night with peace of mind, knowing that, while they might still face challenges, those challenges would not be a lack of access to health care. Justice Barrett never felt this relief because she never carried the worry that came along with having a disabled child before the ACA became law. 

After the ACA was passed, we no longer worried that Claire would lose her health insurance because an insurance bureaucrat decided what her life was worth and that she was too expensive to keep alive. Friends who received pre-natal diagnoses of illness or disability felt confident that after their children were born they would never have to go without health care because of pre-existing conditions, or because they could not afford to pay for the care their children needed.

Yet Justice Barrett is clearly on record as being opposed to the ACA and is poised to be the decisive vote to overturn the law. She takes this position knowing that without the ACA’s mandates millions of Americans, like her son, with pre-existing conditions could lose their insurance and access to health care.  

Justice Barrett now has a secure, life-time job with access to some of the best health benefits offered in the country. Few other Americans are so lucky. While I certainly believe that every Supreme Court Justice and their family should have access to quality healthcare, I do not believe that this right should be guaranteed only to the wealthy and the powerful. Neither does Joe Biden, whom Americans just elected with a record number of votes – many of those votes cast before Justice Barrett was confirmed. I, too, believe that everyone deserves the right to access healthcare, even if they were born with pre-existing conditions.

It is stunning that after making so much progress toward achieving this goal we are now on the cusp of limiting access to health care, rather than taking steps to expand Medicaid and other programs that ensure that everyone has the care they need. I believe the voice of the American people should be heard. Americans just voted in overwhelming numbers to support these ideals: compassion and that every life has value. 

After four years, no viable alternative to the ACA has been proposed. The ACA must stand!

Claire deserves better. We all do.

[Adapted from Jamie’s remarks delivered on the steps of the U.S. Supreme Court during oral arguments on the future of the ACA, November 10, 2020.]

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Jamie Davis Smith is a mother of four who lives in Washington, DC. She is an attorney, writer, and disability rights advocate. Jamie is a member of Little Lobbyists, and her articles about her family's experiences with disability and advocacy are frequently featured in national publications.

Walewska and her son Aire. [image description: A mother & son pose in front of a bookcase. The mom has long black hair & wears blue-frame glasses. The son has short dark hair.]

Walewska y su hijo Aire. [descripción de la imagen: Una madre e hijo posan frente a un librero. La madre tiene cabello largo negro y usa espejuelos de montura azul. El hijo tiene pelo corto y oscuro.]

Let me tell you about my son: His name is Aire, which is Spanish for air. He loves soccer, piano, acting, drawing, biking, silly jokes, and math. 

Like more than 100 million others in the U.S., Aire has pre-existing medical conditions—including autoimmune and adrenal disease, severe allergies, and an Autism Spectrum diagnosis—that insurance companies would prefer not to cover, in order to protect and increase their multibillion dollar annual profits.

When I first moved to Virginia some years ago, I had just sold my first home, because our family simply could not afford to pay the mortgage and all the deductibles, co-pays, and out-of-network fees associated with numerous medical treatments and therapies for my son. Although we had health insurance, we had to spent $80,000 in out-of-pocket expenses in just one year. 

Unlike most other children in the US, my son is lucky enough to be part of a family full of lawyers willing to fight our health insurance companies. But this is outrageous! No one’s health should be tied to their wealth, or to their ability to retain a small army of attorneys to advocate for them.

That is why Aire and I became members of the Little Lobbyists, a family-led organization advocating for health care for children with complex medical needs and disabilities. Little Lobbyists also speaks up for our children’s rights to an education and community inclusion.  

We all came together because we rejected the repeal of the Affordable Care Act, as well as any health initiative based on the idea that health care is a privilege that can be rationed like potatoes or bread.

Aire first met Congresswoman Jennifer Wexton (VA-10) when she held her first meeting as a sitting congressperson after the 2018 election with a group of our Little Lobbyists families. Since then, she has met with our families at one of our local parks and at a local library, and she has welcomed us as we went trick-or-treating in Congress last year. My son and I had the honor of attending the 2020 State of the Union address as guests of Congresswoman Wexton. 

Walewska Watkins speaking at Rep. Wexton’s Election Night celebration. [image description: A computer screenshot with blue graphics and featuring a tall woman with long black hair at a podium, wearing a Little Lobbyists t-shirt.]

Walewska Watkins hablando durante la celebración de la noche de elecciones de la representante Wexton. [descripción de la imagen: una captura de pantalla de computadora con gráficos azules, que muestra a una mujer alta con cabello largo y negro en un podio, vestida con una camiseta de Little Lobbyists.]

Congresswoman Wexton has listened to our grievances and our friends’ grievances regarding the rising costs of health care, the continuing challenges that keep disabled children from full community inclusion, and the need to eliminate from all publicly funded schools the practices of restraint and seclusion that so frequently target minority children.  

She understands that Virginia’s District 10 families need Congress to strengthen and correct the Affordable Care Act health insurance market exchanges and to expand Medicaid. She is also clear that we must not allow Medicaid block grant limits, like those currently imposed on the territorial possessions of the United States—including my native island nation of Puerto Rico.  

But Congresswoman Wexton has done more than just listen to Little Lobbyists’ families about their fears that their children would become uninsurable and their lives cut short if the Affordable Care Act were repealed by Congress or overturned by the U.S. Supreme Court.

She has consistently voted to pass legislation that would lower the costs of prescription drugs, reduce insurance premiums, eliminate junk health insurance plans, and increase funding for educational services and mental health professionals to serve our youth. 

I have felt proud, inspired, and delighted to be Congresswoman Jennifer Wexton’s constituent, and to be a member of Little Lobbyists.

[These remarks were adapted from Watkins’ speech at Rep. Wexton’s Election Night party on November 3, 2020.]

Permítanme contarles sobre mi hijo: Su nombre es Aire[.] Le encanta el balompié, ​​el piano, la actuación, el dibujo, el ciclismo, los chistes y las matemáticas.

Al igual que más de 100 millones de personas en los EE. UU., Aire tiene condiciones médicas preexistentes—incluyendo enfermedades autoinmunes y adrenales, alergias graves y un diagnóstico del espectro autista—que las compañías de seguros de salud preferirían no cubrir para proteger y aumentar sus multimillonarias ganancias anuales.

Cuando me mudé por primera vez a Virginia hace algunos años, acababa de vender mi primera casa, porque nuestra familia simplemente no podía pagar la hipoteca y todos los deducibles, copagos y tarifas fuera de la red asociados con numerosos tratamientos médicos y terapias para mi hijo. Aunque teníamos seguro médico, tuvimos que gastar $ 80,000 de nuestro bolsillo en solo un año.

A diferencia de la mayoría de los niños y niñas en los Estados Unidos, mi hijo tiene la suerte de ser parte de una familia llena de abogados dispuestos y dispuestas a luchar contra nuestras compañías de seguros médicos. ¡Esto es indignante! La salud de nadie debe estar ligada a su riqueza ni a su capacidad para retener un pequeño ejército de abogados y abogadas para defenderle.

Es por eso que Aire y yo nos convertimos en miembros de Little Lobbyists, una organización familiar que aboga por un cuidado de salud asequible y calidad para los niños y niñas con necesidades médicas complejas y discapacidades. Little Lobbyists también defiende sus derechos a la educación y la inclusión comunitaria.

Nos unimos porque rechazamos la derogación de la Ley de cuidado de salud asequible (Affordable Care Act) así como cualquier iniciativa de salud basada en la idea de que la atención médica es un privilegio que se puede racionar como las papas o el pan.

Aire conoció por primera vez a la congresista Jennifer Wexton (VA-10) cuando ella celebró su primera reunión como congresista en función después de las elecciones de 2018 con un grupo de nuestras familias de Little Lobbyists. Desde entonces, se ha reunido con nuestras familias en uno de nuestros parques locales y en una biblioteca local, y nos dio la bienvenida cuando fuimos a pedir dulces en el Congreso durante Halloween el año pasado. Mi hijo y yo tuvimos el honor de asistir al discurso del estado de la unión 2020 como invitados de la congresista Wexton. 

La congresista Wexton ha escuchado nuestras quejas y las quejas de nuestras amistades sobre los crecientes costos de la atención médica, los continuos desafíos que impiden a los niños y niñas discapacitadas una inclusión comunitaria plena y la necesidad de eliminar de todas las escuelas financiadas con fondos públicos las prácticas de restricción y aislamiento con frecuencia se dirigen contra los grupos minoritarios.

Ella comprende que las familias del distrito 10 de Virginia necesitan que el Congreso fortalezca y corrija los intercambios del mercado de seguros de salud de la ley de cuidado de salud asequible (Affordable Care Act) y que expanda Medicaid. También tiene claro que no debemos permitir la reforma de Medicaid a través de subvenciones en bloque, como las que actualmente se imponen a las posesiones territoriales de los Estados Unidos— incluyendo a mi nación natal, Puerto Rico.

Pero la congresista Wexton ha hecho más que simplemente escuchar a las familias de los Little Lobbyists sobre el temor de que sus hijos e hijas se vuelvan no asegurables y que sus vidas se trunquen si el Congreso deroga la Ley de cuidado de salud asequible (Affordable Care Act) o si la Corte Suprema de los Estados Unidos la anula. 

Ella ha votado constantemente para aprobar legislaciones que reducirían los costos de los medicamentos recetados, reducirían las primas de los seguros, eliminarían los planes de seguro médico basura y aumentarían los fondos para los servicios educativos y los profesionales de la salud mental para servir a nuestra juventud.

Me he sentido orgullosa, inspirada y encantada de ser una constituyente de la congresista Jennifer Wexton y de ser miembro de Little Lobbyists.

[Estos comentarios fueron adaptados del discurso de Walewska Watkins durante celebración de la noche de elecciones de la representante Wexton el 3 de noviembre de 2020.]

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Walewska Watkins is an Eviction Prevention/Housing Attorney at the Legal Services of Northern Virginia. She received her Juris Doctor from Georgetown University Law Center and her LLM in Environmental Law from Tulane University Law School. She is licensed to practice law in New York, California, Puerto Rico, the District of Columbia, and the Commonwealth of Virginia. Prior to joining Legal Services of Northern Virginia, the native Puerto Rican islander gained experience working for the Chief Magistrate Judge in the U.S. District Court for the District of Puerto Rico (Hon. Justo Arenas) and as a litigator and administrative counsel focused on civil rights, environmental regulation and environmental justice, gender discrimination, and First Amendment rights. Ms. Watkins is a Partner in Policymaking TAA member at the Virginia Board for People with Disabilities, a member of the Virginia Latino Advisory Board, and a member of the Fairfax County Community Action Advisory Board, which advises the county’s Board of Supervisors on the needs of limited-income persons and recommends policies to promote meaningful change.

Walewska Watkins es abogada de prevención de desalojos y materias de vivienda en Legal Services of Northern Virginia. Recibió su grado en leyes Georgetown University Law Center y su maestría en derecho ambiental de la Facultad de Derecho de Tulane University. Tiene licencia para practicar la abogacía en Nueva York, California, Puerto Rico, el Distrito de Columbia y Virginia. Anteriormente, en su país natal de Puerto Rico, adquirió experiencia trabajando para el Juez Magistrado Principal en el Tribunal de Distrito de los EE. UU. Para el Distrito de Puerto Rico (Honorable Justo Arenas) y como litigante y abogada administrativa enfocado en derechos civiles, regulación y justicia ambiental, discriminación de género y derechos bajo la primera enmienda constitucional. Ms. Watkins es miembro del TAA de los Partners in Policymaking de la Virginia Board for People with Disabilities, miembro de la Virginia Latino Advisory Board y miembro de la Fairfax County Community Action Advisory Board, que asesora a la Junta de Supervisores del Fairfax County sobre las necesidades de personas de ingresos limitados y recomienda políticas para promover un cambio significativo.

Amanda Upton (l) and her family. [image description: From left to right, a mom, a young daughter, a dad, and another young daughter, all with colorful t-shirts, light hair, and each wearing a face mask, pose outside.]

I am the mom to two wonderful daughters who love to pretend to be princesses and fairies. They love spending time with friends and are two of the most compassionate people I know. Some of that compassion for others comes out of their empathy and life experiences. While we are still searching for the name of their genetic disorder, their symptoms tell us that multiple body systems need extra support with things like feeding tubes, oxygen, leg braces, and most recently an intravenous infusion port for my oldest, all to support their bodies with low muscle tone and dysautonomia symptoms. 

My kids have been covered under ACA for their entire lives; however, part of why I’m so passionate about making sure the law remains in place for them is because I had to deal with health insurance before the ACA went into effect. 

I married my high school sweetheart in college. We had always been under our parents’ employer-based insurance, so it was our first time buying insurance on our own. I had been diagnosed with asthma and ovarian cysts. My husband had an exercise-induced asthma diagnosis when he was a kid, but no issues with it as an adult. On the other hand, in the year before our wedding, I had an asthma attack that landed me in the hospital for several days. I also ended up in the ER with a cyst that was problematic. My husband's underwriting process was fast. Mine took forever: I kept getting calls and paperwork. 

We were finally granted insurance; however, my premium was about double that of my husband's. The first time I went to the pharmacy with this policy, I was informed that the drugs Singulair and  Advair prescribed for my asthma, and birth control pills prescribed to stop my ovarian cysts would not be covered. Not because we had more to pay toward our out-of-pocket max, but because--no matter what--these would never be covered because they were considered to be treatments for pre-existing conditions. Thus, in underwriting, my insurer had written them out. 

A few months after our policy was active, I went to a walk-in clinic for a sinus infection, and later received the full bill because the visit had been denied. I called the insurance company, and they explained my policy: If any illness I had involved my reproductive system, lungs, or sinuses, it would not be covered at all, even if it had no relation to my asthma or ovarian cysts. At this point I was having some joint issues, but I felt like seeing a doctor for those concerns was not wise. I couldn't afford one more pre-existing condition if we needed to switch insurance for some reason. 

It hit a point where we made the choice to become uninsured because the policy we had would literally not pay any bill submitted to them. The insurer claimed “pre-existing condition” for everything, and we were paying hundreds of dollars per month as college students for a plan that was garbage. 

The ACA went into effect while my husband and I were still in college, and we were both able to go back onto our parents’ insurance plans. My joint issues have now been diagnosed as Ehlers-Danlos Syndrome, so I really should have done something about it then. But insurance stood in the way. My girls have more pre-existing conditions than I do, so I don't want them to be paying for junk insurance as I had to do. There’s no way that if the ACA is overturned they would be able to buy commercial insurance. They would also have very likely hit their lifetime max by now due to the amount of hospital stays and specialists they have seen. 

In the words of my seven-year-old, “The ACA is important because it keeps people alive.” She understands the reality that insurance pays for her medications and medical supplies; because those are covered, she is able to just be a kid. The fact that anyone would want to repeal the Affordable Care Act is shocking to her; her compassionate heart just does not understand why people would be OK with insurance companies not covering her and her friends. 

I do not want her generation to be in the same shoes I was in for insurance. Junk healthcare plans only help the insurance companies and take advantage of average Americans. My pre-existing conditions will always be a part of me: I believe we need healthcare in this country that cares for the whole person. If we really believe that we all are created equal, then we need our healthcare laws to reflect that. 

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Amanda Upton is a midwestern mom and a licensed teacher for children from birth to age eight in both regular and special education. After several years in the classroom, her teaching license is now being used at home to homeschool her daughters. She loves all things Disney Parks and experimenting in the kitchen. Amanda has also written several articles for Complex Child. 

Erin & her daughter Lucia. [image description: A mom with long dark hair, wearing sunglasses, poses with her disabled daughter.

These past few weeks as our country teeters on a precipice, and despite what I was taught in kindergarten, I find myself fantasizing about having a bully on my side, being as cruel as it takes to cut down my fiercest opponent.

I should know how good that sounds, because in this political climate, my family is considered weak and needy. 

My husband and I are both highly educated and work at fulfilling jobs. Our daughter is six, and she lights up any room with her wide smile and her infectious laugh. Lucia has a progressive, genetic disease of the brain, but with the proper medical care, therapies, equipment, and treatment, she can have a high quality of life. 

When I started telling my family’s story four years ago, about how our private insurance didn’t cover what my disabled and medically complex daughter needed to survive and thrive (so we rely on Medicaid), our vulnerability was on full display. Yet, I was pleasantly surprised to find most people understanding, empathetic, even grateful to be informed about an injustice they simply did not know existed.

A few years later, when this Administration and Republicans tried to repeal the Affordable Care Act (ACA) through legislation and my daughter’s Medicaid was on the chopping block, people seemed willing to acknowledge how scary that was for my family. Even if they had qualms about universal healthcare, or it didn’t seem to affect them directly, they understood why I was worried. They could see it from my point of view.

But this year, when my medically complex daughter’s healthcare still hangs at the mercy of this Administration, Congress, and the Supreme Court, it seems like people have stopped listening.

Perhaps they’re tired of hearing me advocate and worry. But more often these days, they actively deny my fears, and they casually brush off my concerns, telling me that there’s nothing to worry about. I’m over-reacting, they chide. Everything will be okay.

It seems harmless, even good-natured, to tell someone they don’t need to worry. But there’s a calculated disdain and distancing in these comments that makes me fearful. I wonder how people can diminish my concerns when they know my daughter’s healthcare has been under threat for two-thirds of her short life. How can they tell me not to worry when they support legislators and an Administration that have kept her healthcare in jeopardy in the midst of a global pandemic? How can they think I’m overreacting, when all I’ve ever wanted was to keep my daughter safe and healthy?

I worry that I’m witnessing the making of a nation of bullies.

Bullies aren’t born cruel, they’re made that way. Over time, as they grow callous to other people’s fears and feelings, they engage in gaslighting and victim-shaming, numbing themselves to reality. That numbness lets them imagine the world otherwise.

No one thinks they’re a bully, even those who support one. But if you’re cheering one on so loudly that you can’t hear the cries of distress coming from your neighbors above the noise, just who is it that you have actually become?

Lucia Raffety-Schneider. [image description: A young disabled girl wears a pumpkin costume for Halloween. Her wheelchair has been turned into a pumpkin patch costume, with a white picket fence, green vines & additional pumpkins.]

I’ve struggled with how to continue to advocate for my daughter in this abusive political climate. How many times will we stick our necks out, believing it will be different, only to be told by someone that it’s not as bad as we think it is? Everyone tells you that the best way to deal with a bully is to turn around and walk away, but how do you do that when they’ve got you by the neck?

It was only this evening that I realized, maybe I can’t walk away, but you can.

You can stop cheering on a bully. You can walk away from apathy. gaslighting, aggression, and cruelty.  

When you walk away from a bully, you can walk back toward those people in need in your life and in our country, and you can pull up a chair and listen. You can move toward people who matter to you, and try to understand and accept their pain, their hurt, and their fear.

When you see someone else’s fear and pain, you forget yourself because you start seeing them more clearly, maybe for the very first time.

Walk away from the bully, come closer to your neighbor. We will need each other to turn this country around.

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Rev. Dr. Erin Raffety is a Presbyterian pastor and a Research Fellow at the Center of Theological Inquiry where she studies congregational ministry with people with disabilities. Besides her academic work, Raffety has published with The Huffington Post and Church Anew.

The Stone Family (Jeneva, Rob, Roger) after casting their ballots at a drop box in Maryland. [image description: A woman and two men, one a wheelchair user, pose in front of a State of Maryland Official Drop Box with the colorful logo of the Maryland State flag. The woman wears a blue “Health Care Voter” t-shirt and face mask. The young man in a wheelchair wears a Darth Vader face mask and holds a photo of his sibling. The other man wears an “Equality” face mask.]

With less than a week before the election, I’m sure you’ve cast your vote, or have a plan to vote. Health Care Voters are needed now more than ever with the recent appointment of Amy Coney Barrett to the Supreme Court. The Affordable Care Act (ACA) is in jeopardy. If the ACA is overturned, 21.1 million people will lose their health care. Justice Barrett has a paper trail showing her opposition to the ACA, and is likely to vote to strike it down. 

Our best defense is a good offense--a clear victory for Joe Biden and Kamala Harris (who, unlike the President, have a plan for health care), as well as electing a Democratic Senate. With Democrats in charge of the presidency and the legislative branch, we can pass legislation to protect and improve the ACA, regardless of what the Court decides. 

What can you do? In these remaining days before the polls close, you can tell your health care story to your relatives, friends, and neighbors and convince them to vote for the ACA by voting for the Democrats, who have universally pledged to protect our care.

You can also share facts about the ACA, as the law has been the victim of a decade-long misinformation campaign. Most people know that the ACA offers these basic safeguards: protection for people with pre-existing conditions, no caps on annual or lifetime costs, and the ability to keep your children on your plan through the age of 26. 

People need to know that these benefits apply not only to ACA marketplace plans, but to ALL insurance plans issued in the U.S.

The ACA also mandates 10 Essential Benefits to be covered by all health care plans issued in the U.S., which include the ACA marketplace, private, government, and employer-based plans. If the ACA is overturned, many insurers will opt out of these benefits:

• Ambulatory patient services (outpatient care you get without being admitted to a hospital)

• Emergency services

• Hospitalization (like surgery and overnight stays)

• Pregnancy, maternity, and newborn care (both before and after birth)

• Mental health and substance use disorder services, including behavioral health treatment (this includes counseling and psychotherapy)

• Prescription drugs

• Rehabilitative and habilitative services and devices (services and devices to help people with injuries, disabilities, or chronic conditions gain or recover mental and physical skills)

• Laboratory services

• Preventive and wellness services and chronic disease management

• Pediatric services, including oral and vision care 

The ACA also helps both rural and urban hospitals stay open and maintain quality care standards. When people are struggling to make ends meet, if they can’t afford health insurance without a subsidy (or can’t get a federal subsidy, more on that below), they can’t pay their medical bills. Fewer people eligible for Medicaid also means fewer dollars to support the compassionate missions of hospital emergency rooms, where no one is turned away. 

If the ACA is overturned, the Urban Institute projects that U.S. hospitals will face a $56 billion decrease in revenue, nationwide, and will have to absorb a $17.4 billion loss due to uncompensated care (i.e., people who can’t pay their bills because they don’t have health insurance, but get sick anyway). That’s going to put a lot of hospitals out of business. 

In addition, Medicaid, particularly Medicaid expansion under the ACA, pays for school nursing for all children, as well as individualized nursing for children with complex medical needs and disabilities, and the physical, occupational, and speech therapies our children require. If Medicaid is cut, your child’s school nurse could disappear. 

Do you, or people you love, live in one of the 12 states that have not yet accepted federal Medicaid expansion dollars? These states are Wyoming, South Dakota, Wisconsin, Kansas, Texas, Tennessee, North Carolina, South Carolina, Mississippi, Alabama, Georgia, and Florida. Some of their citizens have been misinformed about how the ACA could have helped them purchase health care.

You can tell them that if a state refused to expand Medicaid, that state also passed on the attached money for federal subsidies that made ACA plans affordable for low and middle income people through the state insurance exchanges. The average federal subsidy for individuals who purchase their ACA plans through state marketplaces is $5,500--nothing to sneeze at. 

If you live in one of these states, your governor may have blamed the Democrats for the “high cost” of ACA plans, while at the same time refusing subsidies the federal government was offering to help you. My nieces play hockey, and they’d call that a deke--a fake-out to block the opposing side. 

Tell your friends and family that voting is an act of love--for you, your family, the nation, and, most likely, themselves. 

[Note: Text of the ACA’s 10 Essential Health Benefits taken directly from www.healthcare.gov]

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Jeneva Stone is the blog manager for Little Lobbyists, and Rob’s mom. She also writes poetry and creative nonfiction.

I’m Myka’s mom. I’m just one mom of one child with serious medical complexities, but I know I represent thousands of families just like mine throughout our country. 

Myka exhibiting her aerialist skills. [image description: a teenager in an aqua bikini leaps above a family backyard pool to dunk a small red & white basketball into a pool-side hoop.

Myka is our third child after a set of twins. Boy twins! I had really hoped that I would have a girl after two rambunctious boys. I am so lucky to say that came true. Myka, along with her two older brothers, are my soul. They are everything to me.  

My daughter was born on a Thursday night in September of 2009, three weeks ahead of schedule, and about seven months before the Affordable Care Act (ACA) was signed into law. After having twin boys sent straight to the neonatal intensive care unit (NICU) after their birth, it was a nice change of pace to have our baby in our room to cuddle and love immediately. Myka struggled a lot those first few days and by her fourth day of life, she was diagnosed with a congenital heart defect. I had no idea what that meant for her or our family. I didn’t realize then the roller coaster ride we had just embarked on. 

Myka then spent a few weeks in the NICU. I’d spend hours at her bedside missing my toddler boys at home. It was grueling going back and forth, but I knew she was exactly where she needed to be and the NICU nurses took good care of her. When Myka was able to come home, we breathed a sigh of relief and felt our family was complete. 

We had orders to follow up with a pediatric cardiologist. Her “minor heart murmur” turned out to not be so minor. By the age of three-and-a-half months, Myka showed signs of failure to thrive. Her cardiologist decided she would need open heart surgery. I never knew a tiny baby could have that many tubes and wires connected to its little body, but there we were seeing it first hand.  

We lived the next few months in fear. Fear of losing our baby in the middle of the night as her first surgery had not done enough to repair her cardiac issues. Myka underwent her second open heart surgery at the age of eleven months, with another stay in the cardio-thoracic intensive care unit.  

At that point, I was a stay-at-home mom and my husband was employed at a company that offered employer-provided health care. We remained on his health insurance plan until 2012 when my husband was laid off. With his job went our health insurance. I was devastated. Our family viewed health care as essential as a home over our heads and food on our table. Without it, our daughter would not survive or thrive.  

However, because the ACA had been enacted just a few years prior, my husband decided to start his own business. We knew we could purchase our own health care plan because the ACA guaranteed that those with pre-existing conditions could not be denied coverage.  

My husband launched his business, and I’m happy to say that after almost seven years, his business is thriving, even employing several individuals throughout the unknowns of Covid. This small business has kept a roof over our family’s heads, food on our table, clothes on my kids’ backs, and an occasional trip back to the Midwest to visit grandparents.  

Myka lives the life of any other little girl. She is in the fifth grade. She loves reading and is obsessed with Harry Potter. She is a Girl Scout and is her troop’s top cookie seller this past year! She performs in ice skating competitions and aerial showcases. She loves her friends, her pets, and her backyard family BBQs. She has taken up baking and tennis.  

The Eilers family. [image description: a family consisting of a mother, father (holding a small dog), twin boys, and a young girl pose in front of a set of large “happy birthday” signs posted in front of their home, a Spanish mission-style bungalow.

Myka has lived this life because of the ACA. She sees a team of doctors: cardiology, neurology, and orthopedics. She needs an MRI every six to nine months. I have seen the medical statements come through. I know how much each of the appointments or procedures costs. Before her first birthday, she had hit almost $500,000 in medical expenses. Not only does the ACA protect those with pre-existing conditions, but it prevents insurance companies from dropping coverage when you hit a lifetime cap. By the age of one, Myka was halfway to the former standard lifetime cap of a million dollars.  

I’m grateful for the ACA. I worry everyday about what will happen to my family and my child should this law be ruled unconstitutional in the U.S. Supreme Court. I know what it has meant to us and how it has benefited our family.  

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Angela Eilers lives in Yorba Linda, California, with her family. She is a member of Little Lobbyists. This blog was adapted from testimony Angela provided on the ACA to the California State Senate Health Committee on October 21, 2020.

On the left, Sandra’s father. On the right, her son. [Image description: A split screen shows, left, an older white man with glasses, suit and tie, speaking into a microphone. To the right is an image of a black child wearing a black face mask and a blue jacket.]

March 2007: My sixty-six-year-old father is rushed to the hospital after surviving a fairly major heart attack while living in another country. I fly to the city where he is, assess the cramped and disjointed medical infrastructure and immediately initiate plans to Medevac him home for care. He tells me he does not want to return to the United States for the surgery that could save his life. Thinking he is anxious or heavily medicated, I try to persuade him to consider transferring to the nearest U.S. hospital. He signals for me to lean down closer where he quietly whispers “I’m uninsured.” 

“What?!” I nearly yelled at the man who made sure I maintained insurance through my cavalier twenties, no matter how small my mostly gig-based income. He then informs me of a pre-existing condition that made him ineligible for gap insurance once he retired. He tells me that even if we can figure out how to finance the Medevac, he can’t afford the surgery in the U.S. with only Medicare coverage. Even worse, he doesn’t want to be a financial burden to my siblings and me if he survives. He looks at me sternly and whispers, “Just let me die.”

After a week in the intensive care unit of this chaotic overseas hospital, he undergoes the surgery, emergently, and dies on the operating table. The thought that getting him home might have made a difference still weighs heavily on me.

December 2008: My son is born. We name him after my father. He is healthy and beautiful and brilliant. 

March 2010: The Affordable Care Act is signed into law. 

August 2011: My nearly three-year-old son loves trucks and airplanes and ambulances. While passing a parked ambulance in our neighborhood he says, “You know, Mommy, I’ve never been in an ambulance before.” I reply enthusiastically, “Maybe one day you can see the inside of one!”

Two days later I find my son seizing in bed. My husband calls 911. An ambulance rushes us to our nearest hospital. Within days my son loses his ability to walk and talk and swallow. He is eventually diagnosed with a type of autoimmune encephalitis. We live in hospitals for fifteen continuous months. 

Because of the Affordable Care Act (ACA), we do not face the calculus my father confronted. We don’t have to think about the cumulative costs of my son’s multiple life-saving surgeries against a cap of lifetime limits on insurance benefits—which would have been exhausted within the first month of his hospitalization—while making impossibly hard medical decisions. 

November 2012: We are finally discharged to provide hospital-level care at home. My son’s disease leads to long-term disabilities and further medical complexities. Because of the ACA, we are able to change jobs to better accommodate his care needs and, even with his pre-existing conditions, insure him when we make the change. 

Over time he is able to go to an inclusive, wheelchair-accessible neighborhood school. He builds strong friendships. He participates in adaptive sports and loves adventure. Eventually he is strong enough to enjoy adaptive horseback riding, ziplining, fishing, swimming, and skiing. 

October 2020: With healthcare at stake in the upcoming election and in the context of a lethally mismanaged global pandemic, I reflect on the despairing look on my father’s face when calculating the cost of returning home to receive care. I think about the many people who, like my father and my son, will become unexpectedly ill and depend on a robust social contract for healthcare that we must fiercely and collectively protect. 

While living in hospitals, we met many families facing sudden, unexpected and life-altering illnesses, accidents, and events, from stroke to car wreck, from fallen tree branch to gun violence, from heart attack to rare disease. What happened to my father, to my son, and to our fellow hospitalized families--and what is happening right now to many Covid survivors facing long-term health complications and disabilities--could happen to any one of us at any time. I am profoundly thankful that, thus far, we have not had to make the impossible calculations for my son’s care that my father made regarding his. 

Without a trace of hyperbole, I know that my son’s life depends on strengthening the social contract that the ACA represents, rather than further unraveling it. 

This November, protect your children. Protect your parents. Protect yourself. Protect my son. Vote.

In loving memory of Robert G. Stein

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Sandra Joy Stein is a writer and educator. Her most recent New York Times article can be found here. 

Claire Fox in the PICU as an infant. Image description: An infant rests in a hospital bed, covered by a blanket with a baby footprint pattern. She is intubated, and dozens of medical lines and tubes run from her body to several machines, including an IV pole with multiple monitors.

This week my family saw the first and only Vice Presidential Debate. I want to address the comment from Vice President Pence that I see people clinging to as they support him and President Trump: “I am Pro-Life, and I will not apologize for it.”

My daughter Claire, now six years old, loves to play outdoors. She loves playgrounds, and swinging is her favorite. She loves to tease her siblings and generously give hugs and kisses. Claire was born with a rare chromosome disorder called Cri Du Chat Syndrome. This caused numerous dangerous heart problems, requiring surgery for her to survive. Claire has a feeding tube that she uses for all of her nutrition. She will always need support to live her best possible life.   

I am choosing to share this photo of Claire at five days old. At that time, she was at “day one” in her recovery from open heart surgery. Claire had already been intubated three times and flown on an airplane from Holston Valley Medical Center in Kingsport, Tennessee, to Vanderbilt Children’s Hospital in Nashville, Tennessee, five hours away. My husband, Sean, and I were told that she might not survive. We were given no guarantees.

So many people love to see the healthy, happy, blonde-haired, blue-eyed little six-year-old that Claire is today. There is no doubt that she is loved and treasured by many people. But, the girl that she is today was this baby teetering between life and death. This photo is PRO-LIFE. This picture is the Affordable Care Act (ACA).

Claire Fox today. Image description: A young white girl with blond hair and wearing a pink “Little Lobbyists” t-shirt and navy blue pants holds onto the yellow bars of playground equipment.

The Trump Administration’s attempt to strike down the ACA in the Supreme Court with no plan to replace it is NOT PRO-LIFE. It is cruel. It is grossly hypocritical. President Trump and Vice President Pence have NO PLAN for health care. They do not even have a framework to offer a plan to families like mine. 

The ACA means that Claire cannot be discriminated against because of her heart disease and disabilities. It means that even though her heart repair cost millions of dollars, there is no cap on what will be covered for the rest of her life. It means that she cannot be denied coverage due to preexisting conditions. It means that Sean and I can keep her on our health insurance plan until she is 26. Claire needs that. My God, Claire deserves that!

So let me be crystal clear when I say that a vote for President Donald Trump is a vote AGAINST Claire’s future and well being. It is voting AGAINST her chance to live a full, healthy, and meaningful life. Not for one second has this administration stopped attacking our children's right to access health care on strictly partisan lines. They want to destroy the ACA simply because Obama created it. 

I will not apologize for talking about politics. I will not apologize for my stance. In our family, we do not have the privilege of sitting back and staying quiet. Claire needs us and depends on us to demand better. I, too, am Pro-Life, and I will not apologize for it.

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Jessica Sharp Fox is a member of Little Lobbyists who lives in Tennessee. She is married to Sean Fox, and is a mother of three. Jessica works as a registered nurse.

Sienna Striner. She has short brown hair, a big smile, and wears a yellow t-shirt with the words, “I am Sienna. I can & I will. Just watch me.”

I am the mother of two beautiful girls, Sienna, age 4, and Haley, age 7. Sienna is a remarkable little girl who loves life. She is a smiley, energetic, empathetic ray of sunshine. Her favorite activity is spending time with her big sister, whom she adores. If we let her, she would watch Sesame Street all day. Elmo is a way of life in our house. She loves music, books, therapy, and playing outside. She is mischievous, funny, and beautiful. She has the ability to bring smiles to our family on the worst of days. We wouldn't change one thing about her. Sienna happens to have an extra copy of her 21st chromosome, also known as Trisomy 21 or Down syndrome. 

When I see President Trump trying to repeal the ACA and take services and medical care away from our community, it breaks my heart. Once again, we as parents are forced to suit up for battle and prove that our children are worthy of health care. Health care is a right. Not every parent of a child with disabilities has the endless resources that Judge Amy Coney Barrett seems to have. As a fellow mom of a disabled child, I would expect Judge Barrett to fight for the ACA alongside us, but her record demonstrates just the opposite. 

Sienna's diagnosis came as a surprise to us. After I endured four miscarriages, she was our miracle baby. Our miracle baby surprised us on the day of her birth with her diagnosis and a heart condition. We were completely unprepared to raise a child with a disability. After I delivered her, a kind nurse explained to me how lucky we were to have Sienna here in Pennsylvania after the passage of the Affordable Care Act (ACA). 

Sienna was born with multiple pre-existing conditions that insurance could have refused to cover prior to the ACA. The nurse also explained that as a disabled child in Pennsylvania, Sienna qualified for Medicaid--which is in danger of losing significant funding if the ACA were to be repealed. At the time, in the fog of Sienna’s diagnosis, I didn’t realize the significance of that conversation. Over time, the depth of her words revealed themselves.   

As I entered this new world of early intervention, therapies, and medical needs, I began to realize just how much of a financial toll this would have taken on us if it weren't for the protections of the ACA and Medicaid. Custom orthotics, outpatient weekly therapies, overnight hospital stays, adaptive strollers, walkers, safety sleepers, echocardiograms, communication devices, bloodwork--the list goes on. One after the other, I opened the explanation of benefits statements, and when I saw the hard costs of all the services we needed, I was shocked. Sienna receives seven weekly therapies.The costs of those alone are $3,400 per week. Without the ACA, her therapies and medical care would have quickly exceeded a lifetime cap. Sienna would have been uninsurable for the rest of her life and left without access to life-saving care. 

Shannon Striner with her daughters Haley and Sienna. Shannon has long blond hair & wears a bright pink sleeveless shirt and white jeans. Haley has long brown hair & wears a sleeveless white dress with a butterfly print. Sienna wears a dress with the same fabric in a blue background. The family is standing outside in front of a picket fence.

We are fortunate to have Medicaid helping with the significant additional expenses not covered by our private insurance. Without Medicaid, we could never afford it all, and Sienna would suffer in the long run. We’d be forced to make tough decisions: like what's more important, that Sienna eats safely and communicates clearly or that we keep a roof over our heads? 

I am proud to be Sienna’s mom. This journey is full of wonder, joy, and unimaginable love. It changes life's most ordinary moments into the extraordinary. But with constant attacks on our health care, it's also agonizing work, hard decisions, and constant advocacy. It gets exhausting fighting for your child, having to prove their value to the world. 

I want to personally thank you, Senator Casey, for your efforts in advocating for our families. You have made a huge difference in our lives. As an everyday Mom, I am also here to demand that you and your colleagues continue to fight for the ACA so that our kids can access the health care they need to not just survive, but thrive. Everyone loses if our children are unable to reach their fullest potential.

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Shannon Striner is a member of Little Lobbyists. She lives in Pittsburgh, Pennsylvania. This blog is adapted from remarks she presented to Senator Bob Casey on October 1, 2020.

Little Lobbyist Angela Carpenter Gildner at the U.S. Supreme Court after advocating for our families. Angela has blond hair and is wearing a black face mask with the words “Health Care Voter.” She is also wearing a navy blue Little Lobbyists t-shirt. The white marble steps and columns of the Supreme Court are in the background.

The 2020 election bears down on us now like a freight train on steel tracks, the hardwood ties that bind them blurring underneath it. My eyes are focused on that coming train, my viscera tightened for impact. But I must act.

What can I do? What can you do? Little Lobbyists has officially endorsed Joe Biden and Kamala Harris for president and vice president because we believe this country needs better and more accessible health care. 

If it’s not obvious by now, it should be: Health care forms the bedrock of a functioning and sustainable economy. And, yes, it’s also a human right. Access to affordable, robust health care means you can get sick and still hold onto your job. Health care decoupled from employers means you can change jobs without risking your family’s health. 

For those of us caring for family members with complex medical needs and disabilities, access to health care--whether through the Affordable Care Act (ACA), Medicaid, or the Medicaid waiver system--allows both our children and their families to survive and thrive, our children living at home where they belong. And, more than that, these baseline supports allow us, as parents, to work to support our children’s other needs, including housing, technology, and transportation. In fact, medical support gives us the time and space to be parents to our children, not just caregivers. 

Here’s what you can do to help elect a president, senators, and representatives whose focus in 2021 will be on preserving our health care:

1. Show your support on social media. Change your social media profile pic to show your support for Biden-Harris and health care. Convince friends and family to do the same. Add one of our profile pic frames! Just search “Little Lobbyists” when changing your Facebook profile picture. And check out Team Joe’s digital tool kit. Take selfies wearing LL’s health care t-shirts. 

2. Share your story with us. Little Lobbyists will work to make your voice heard on Facebook, Twitter, and other platforms. First of all, share your story with us at Little Lobbyists! Be sure to follow and tag us on Facebook, on Instagram (@littlelobbyists), and on Twitter (@LittleLobbyists). Want some data for your own social media posts on health care? Get it at Health Care Voter and Protect Our Care, and be sure to tag them (#HealthCareVoter, #ProtectOurCare) when posting. 

3. Phone bank or text voters. Ok, take a deep breath and set your social anxiety aside. The Biden-Harris campaign needs you to volunteer: make phone calls and/or text voters to get out the vote (GOTV). Sure, you’ll get hang-ups, some people might be a little mean, but, remember, Trump won Michigan in 2016 by only 10,704 votes. That’s about 2 votes per precinct. Change the minds of just 2 voters, and you might help tip the election in swing states. You’ll get a script and dial-in instructions that will identify your computer or phone as a Biden-Harris campaign number. Have a special knack for talking to Midwestern voters? Indivisible Chicago has a Three States, One Mission campaign (Illinois, Wisconsin, Michigan). 

4. Write postcards to voters. More comfortable putting your thoughts into words? Tell others why you’re voting for Biden or a Senate challenger in a swing state. Try Postcards to Voters. You’ll need to register with the group, write a sample card, and get approved. Too many thoughts for a postcard? Write letters for Vote Forward. 

5. Organize others. If you’re feeling more ambitious, you can be a Vote Mobilizer with MoveOn. You can also Take Action with Indivisible. The Arc has a page full of resources for health care advocacy for people with disabilities. In the end, GOTV is all that matters--getting those voters to actually cast those ballots. 

6. Plan your vote. Have questions about voter registration, vote by mail, absentee ballots, early voting, locations of official ballot drop boxes in your state? Are you fielding questions from friends and family you need help to answer? The Biden campaign has a resource here, and the late-night host Stephen Colbert has an extensive website, Better Know a Ballot.  

Health care matters. Health care saves lives. Health care is a human right. To protect health care, save the ACA, and work toward a plan for health care for all in a new Congress, under a new President--VOTE, SHARE YOUR STORY, PERSUADE OTHERS, and ORGANIZE! 

This election is a freight train bearing down upon us all at frightening speed, with about a month to go. One candidate wants to derail health care. The other, Biden, wants to protect our care and protect us. If health care matters to you, the choice is clear. Do something. And be sure to vote.

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Jeneva Stone is the blog manager for Little Lobbyists.

Savannah as an infant. She is strapped to a gurney for medical transport, with a hospital blanket under her head and a rainbow-striped blanket over her torso. A supplemental oxygen cannula has been inserted in both nostrils. She is gripping a bright red stuffed lobster with her left hand.

My daughter, Savannah, loves Disney princesses, dolls, dancing, and outer space. She has heterotaxy syndrome, which literally means “different arrangement.” Her body organs are misplaced, missing, and/or malformed. She has issues with her heart, lungs, airway, intestines, kidneys, and liver. She is missing her spleen entirely. Her most severely impacted organ is her heart. Today, she’s doing pretty well. But five years ago this month, Savannah rapidly declined and crashed at home. She was not yet two. 

By the time we got her to the ER, her oxygen was dipping into the low 40s, when it should be in the 90s. Savannah’s grandfather, a paramedic, met us at the doors and grabbed her out of the car. Her skin was blue, and her eyes were rolling back in her head. He barreled past triage and into the not-yet-totally-clean room, snatched oxygen off the wall and clamped it to her face.

It took eight liters of flow to raise her oxygen saturation levels back into the 80s. Normally when she struggled, even after open heart surgery, she only needed a half liter or less. My husband and I stayed with her, and her grandfather went to the nurses’ station. He knew who was best for Savannah and the situation, and he sent those doctors and nurses in fast.

The room absolutely erupted in activity. I paged cardiology at Savannah’s primary hospital (150 miles away) and handed the doc my phone. They dispatched helicopter transport for Savannah immediately, and her team began dictating what to do over the phone.

In a flurry, we sent someone to our house to grab some extras that we needed, including Savannah’s pacemaker transmitter in case she had had an arrhythmia or heart attack. (Our go bags for admission are ALWAYS packed and with us). Savannah’s grandma joined us in the ER so we could make a plan.

Savannah was given x-rays, was administered IV diuretics and heart medications, and gave blood for labs. Thankfully, she maintained herself better on that eight liters of oxygen.

When transport arrived, we sent Savannah up to the helipad with her grandparents. We couldn’t ride with her, so we kissed her goodbye after the paramedics strapped her in. 

We started driving as fast as we could. Once we got in the car, I called family, I updated friends, and I cried and prayed my baby would stay stable so we could see her again as the helicopter she was in flew over our car.

Do you know what I did not do?

• I didn’t ask if the ER doc was in-network.

• I didn’t ask if the labs were covered on our insurance plan.

• I didn’t get a prior auth for the $40,000 critical care helicopter flight.

• I didn’t worry about hitting any kind of limits or restrictions on our insurance. 

My baby was dying. In that moment, it didn’t matter.

The problem is, later it does matter. That year, Savannah’s medical bills were roughly $1.7 million. Insurance was eager to deny anything they could. Our private insurer line-item denied critical care items from her two-month hospital stay and forced me to appeal them one by one.

I had to fight and appeal and be relentless, all while sitting beside my daughter’s hospital bed, far from home, in the days after she had had open-heart surgery. 

During a medical emergency, no one should be expected to think about prior authorizations or which hospitals and specialists are in-network. Let me correct myself: They shouldn’t be expected to think of it at ALL.

If someone requires emergency or even routine medical care, their primary concern should be getting what they need to best attain and maintain their maximum level of health. That means more health insurance reforms: 

• No step therapy

• No prior authorizations

• No prescription formularies

• No networks

• No caps on care

Savannah today. She is wearing glasses and smiling. Savannah is dressed in a bright orange NASA space costume, including a space helmet. She is clutching an American Girl doll with her right arm, which is dressed identically.

The Trump Administration’s unprecedented attack on health care, and the Republican Party’s hostility to the Affordable Care Act (ACA) threaten my daughter and threaten us all. The U.S. Supreme Court has scheduled oral arguments on the ACA for November 10, just days after the presidential election.

What most people don’t understand is that the ACA is, literally, why my child is alive. She is well past the lifetime caps that used to be on health insurance policies pre-ACA. She couldn’t change insurance plans easily because insurance companies would decline her outright, charge her an unaffordable premium, or refuse to cover her extensive list of pre-existing conditions.

When you go into the voting booth or sit down with your mail-in or absentee ballot, vote like someone’s life depends on it. Because for so many like my daughter, it does.

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Lori Hensler is a member of Little Lobbyists. She is also a jewelry designer, and she lives in Indiana.

Erin’s three children: Collin, Abby, and Bridget. Collin has short blond hair and wears sunglasses and a gray t-shirt. Abby and Bridget have their blond hair pulled back, and each wears a purple t-shirt with pink lettering that says, “Sister of the Year.”

My name is Erin Gabriel. I live in Beaver County in Western Pennsylvania with my husband and three children, Collin, Bridget, and Abby. 

My youngest daughter Abby is a beautiful, fun, mischievous ten-year-old who loves playing with her big sister and brother, going to the theater, exploring the outdoors, and, of course, all things Disney. 

Abby is Deaf-blind, autistic, and has a rare progressive neurological syndrome affecting multiple organ systems. She is considered high risk should she contract Covid-19. 

Today marks 189 days since Abby has been inside any building that is not our home. It has been 193 days since she has been to her beloved school. Summer vacations, playdates, outings, travel plans to visit grandparents--they’ve all been canceled. 

Last month, we had to make the difficult decision to officially pull Abby out of her school--the place that’s become her community over the last eight years--and homeschool her. She, like many children with disabilities, simply cannot access a virtual education, and it's not safe to send her back into a school building while this virus is spreading. But Abby misses her school and her friends.

In normal times, ongoing speech, occupational, and physical therapy help Abby to keep the progress she has made learning to walk, eat and swallow, and communicate. But, with Covid-19, those therapies have all come to a halt. It’s just not safe. 

Abby’s syndrome is progressive. She will eventually lose much of what she has gained, and we are already watching some of that play out. Her seizures will return and intensify. Her muscles will weaken and her spine stiffen. As her disease progresses, we know that she will need more intensive medical care. Attending school and receiving in-person therapies is one way that we try to stave off that potential progression, and I worry about what she stands to lose by not being there right now. 

She has been robbed. Robbed by an Administration that not only failed to act, but blatantly lied about what they knew. Robbed by a President more concerned with his own poll numbers than with the numbers of infections and deaths in our communities.  

And while the President is forcing schools to open without regard to safety, and even encouraging my neighbors to skip the mask, he is also in court trying to repeal the Affordable Care Act (ACA): Trying to take health care away from millions of Americans in the midst of a pandemic. 

All three of my children have disabilities. They rely on the protections of the ACA to access care. Like any child, my kids also have health needs outside of their disabilities. For example, kids fall off their bike and break bones, or sometimes they catch a baseball with their face instead of their glove. 

Life happens. Even during a pandemic. 

When my son Collin was 12, he had sudden and severe abdominal pain. So bad, in fact, that we took him to the emergency room at Children’s Hospital. As a disabled child, he had both private insurance and Medicaid, so I didn’t need to hesitate and contemplate the cost of the visit. As it turned out, Collin had appendicitis. If we had waited another day, his appendix would have burst, a much more dangerous situation. He was admitted and his appendix removed. 

Later that week when he developed complications, we went back to the emergency room, worrying only about my son’s health and not about how we would pay for groceries afterwards. Without Medicaid, we would have hesitated, and far too many families are forced to do just that--they second guess themselves, worried about the cost, and delay treatment. 

In this time of great uncertainty, our families--all of our families--need the certainty that they can access health care without losing their home. Instead of offering that certainty, the President is in court trying to rip health care away from millions. 

Our kids are missing out on so much of their childhood right now. And instead of acting to mitigate this virus in our communities, instead of showing true leadership, the Administration is trying to force schools open without adequate safety measures, all so President Trump can perpetuate a myth of normalcy in the midst of deadly chaos. 

This was all preventable. It didn’t have to be this way. Our children deserve so much better. 

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 Erin Gabriel is Director of Advocacy for Little Lobbyists, and State Chapter Leader for Little Lobbyists Pennsylvania. These remarks have been adapted from those Erin gave at the Protect Our Care Virtual Bus Tour on September 15, 2020.

Rob Stone, now 23 years old, supporting Little Lobbyists & showing off all his advocacy pins

As the mother of a young man with complex medical needs and disabilities, health care means peace of mind: knowing that Rob’s medical and adaptive needs will be met. That Rob can take advantage of technology and medical advances, such as his augmentative and alternative communication (AAC) device. Rob’s Tobii EyeMobile gives him the ability to speak for himself, and he has a lot to say!

Access to quality health care hasn’t been easy for our family. Protecting Rob’s health took us on a 14-year odyssey through seven different private insurers, to the Affordable Care Act (ACA), to, finally, a Medicaid waiver. We learned the hard way that our country’s health care system is too byzantine, too fragmented, and it must be fixed. 

What else does health care mean to me? That one day soon, our protracted civil war over the right to health care will be over. That all of us will have equal access to technology and medical advances. Protecting the ACA is an important first step toward health care for all. 

The U.S. Supreme Court will hear oral arguments November 10 on the Trump Administration’s challenge to the ACA, a case that will decide its fate. We must hope SCOTUS recognizes health care as a necessity, not a choice. This case is the decade-long culmination of Republican efforts to undermine our health care, offering no plan to replace it other than a nebulous idea that the right “to choose” will give us health care--as if doctors treated patients with rainbows and lollipops. 

Acknowledging that health care for all is 100% necessary shouldn’t be this hard, but we live in a society of massive contradictions: If I could make a Venn diagram of conservative positions related to healthcare and "liberty," I’d find significant overlap among persons who claim to act from a religious imperative, deplore abortion, but are quite willing to endorse the use of the verb "to choose,” as in, "I should be able to choose not to buy health insurance," as though that statement has any connection with reality or responsibility, personal or otherwise. 

Choosing not to have health care is an act of gross societal negligence. By choosing not to, you demand that other people shoulder the bills you will inevitably incur when you require (at a minimum) emergency room care, unless you carry a card in your wallet that says you prefer to bleed out on the macadam after your car accident. We must all chip in, as well as support those who cannot afford to do so. 

Especially now, during a pandemic, our health depends on the health of those around us. Yet Republican leadership is still trying to convince us that health care is not a right, but an undeserved entitlement. We don’t have a right to remain healthy, but we do have a right to be sick and stay sick? Even die? Is that why Republicans want to overturn the ACA? Because the ACA takes away our right to “choose” poor health?

Make no mistake about it: Health care is a human right. Medical research and technology is the moon race of this century. Whenever I sit down with doctors or durable medical equipment vendors or pharmacists, I'm stunned by the sheer ingenuity of this country. For those who hunger and thirst for adaptations and answers to their medical problems, let alone righteousness, there's someone out there who's spent their working years thinking about your problems and how to solve them. All persons need access to these advances --despite cost issues--and we must dedicate ourselves to ensuring that access.

We must elect politicians who realize that critical investment must be made in health infrastructure, that health care is part of our larger, job-creating economy, and that we must give all citizens equal access to medical care. If we start from the perspective of cost, assuming that our collective resources are puny (they're not), we'll never get anywhere. If we point fingers of blame, we'll just self-destruct. We have to start from the perspective of humanitarian investment and what this investment will yield for our country, its citizens, and the world.

In the days leading up to the most consequential election in our history, ask yourself this: Have we become a country that looks to the future, or a nation of Hobbits, content to spend our lives by our own home fires, looking at the past? What happened to us? And, more importantly, what will happen to us?

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Jeneva Stone is the blog manager of Little Lobbyists, and Rob’s mom.